1 00:00:05,440 --> 00:00:09,640 WELCOME TO THIS MEETING OF THE 2 00:00:09,640 --> 00:00:10,240 INTERAGENCY AUTISM COORDINATING 3 00:00:10,240 --> 00:00:10,840 COMMITTEE. 4 00:00:10,840 --> 00:00:12,960 I'M JOSHUA GORDON, DIRECTOR OF 5 00:00:12,960 --> 00:00:14,280 THE NATIONAL INSTITUTE OF MENTAL 6 00:00:14,280 --> 00:00:15,480 HEALTH AT THE NATIONAL 7 00:00:15,480 --> 00:00:18,080 INSTITUTES OF HEALTH AND THE 8 00:00:18,080 --> 00:00:19,680 CHAIR OF THE INTERAGENCY AUTISM 9 00:00:19,680 --> 00:00:20,160 COORDINATING COMMITTEE. 10 00:00:20,160 --> 00:00:23,920 I'M JOINED BY DR. SUSAN DANIELS, 11 00:00:23,920 --> 00:00:25,160 THE DIRECTOR OF THE OFFICE OF 12 00:00:25,160 --> 00:00:28,160 AUTISM RESEARCH COORDINATION AT 13 00:00:28,160 --> 00:00:29,560 NIMH, AND THE EXECUTIVE 14 00:00:29,560 --> 00:00:30,560 SECRETARY OF THE IACC AS WELL AS 15 00:00:30,560 --> 00:00:33,520 THE ACTING NATIONAL AUTISM 16 00:00:33,520 --> 00:00:36,480 COORDINATOR. 17 00:00:36,480 --> 00:00:37,800 I'M REALLY PLEASED WE CAN GET 18 00:00:37,800 --> 00:00:39,720 TOGETHER TODAY ON THIS VIDEOCAST 19 00:00:39,720 --> 00:00:41,640 FOR THE PUBLIC, AND I'M VERY 20 00:00:41,640 --> 00:00:44,000 MUCH LOOKING FORWARD TO THE 21 00:00:44,000 --> 00:00:45,360 EXCITING DAY THAT WE HAVE FOR US 22 00:00:45,360 --> 00:00:47,720 TODAY. 23 00:00:47,720 --> 00:00:49,480 I WANT TO TAKE A MOMENT TO 24 00:00:49,480 --> 00:00:52,040 ACKNOWLEDGE SOME IMPORTANT 25 00:00:52,040 --> 00:00:53,080 UPDATES ABOUT SEVERAL OF OUR 26 00:00:53,080 --> 00:00:54,400 COMMITTEE MEMBERS. 27 00:00:54,400 --> 00:00:57,120 FIRST, I'D LIKE TO WELCOME 28 00:00:57,120 --> 00:01:01,120 DR. LEAH LOZIER, I'M NOT SURE 29 00:01:01,120 --> 00:01:02,760 WHICH WAY IT'S SUPPOSED TO BE 30 00:01:02,760 --> 00:01:04,640 PRONOUNCED, YOU'LL LET US KNOW, 31 00:01:04,640 --> 00:01:06,560 FROM THE U.S. DEPARTMENT OF 32 00:01:06,560 --> 00:01:09,200 HOUSING AND URBAN DEVELOPMENT. 33 00:01:09,200 --> 00:01:11,000 DR. LOZIER IS A SOCIAL SCIENTIST 34 00:01:11,000 --> 00:01:13,000 AT HUD. 35 00:01:13,000 --> 00:01:14,240 DR. LOZIER, MAYBE YOU'D LIKE TO 36 00:01:14,240 --> 00:01:19,200 INTRODUCE YOURSELF? 37 00:01:19,200 --> 00:01:21,160 >>THANK YOU, AND GOOD MORNING. 38 00:01:21,160 --> 00:01:22,320 CAN EVERYBODY HEAR ME OKAY? 39 00:01:22,320 --> 00:01:24,320 >>WE CAN HEAR YOU JUST FINE. 40 00:01:24,320 --> 00:01:24,960 >>GREAT. 41 00:01:24,960 --> 00:01:26,200 THANKS. 42 00:01:26,200 --> 00:01:28,400 SO AS DR. GORDON SAID, MY NAME 43 00:01:28,400 --> 00:01:29,320 IS LEAH LOZIER. 44 00:01:29,320 --> 00:01:31,480 I'M A SOCIAL SCIENCE ANALYST 45 00:01:31,480 --> 00:01:32,320 WITH THE DEPARTMENT OF HOUSING 46 00:01:32,320 --> 00:01:33,120 AND URBAN DEVELOPMENT, OR HUD. 47 00:01:33,120 --> 00:01:35,960 I JOINED HUD IN 2014 AS A 48 00:01:35,960 --> 00:01:36,960 PRESIDENTIAL MANAGEMENT FELLOW 49 00:01:36,960 --> 00:01:38,920 UNDER THE OBAMA ADMINISTRATION, 50 00:01:38,920 --> 00:01:40,520 WHEN THERE WAS A PUSH TO TRY TO 51 00:01:40,520 --> 00:01:41,760 BRING FOLKS WITH STEM DEGREES 52 00:01:41,760 --> 00:01:43,040 INTO THE FEDERAL GOVERNMENT. 53 00:01:43,040 --> 00:01:44,920 I HAVE BEEN IN THE POLICY 54 00:01:44,920 --> 00:01:46,760 DEVELOPMENT AND RESEARCH OFFICE 55 00:01:46,760 --> 00:01:49,320 THE ENTIRE TIME, MOSTLY IN THE 56 00:01:49,320 --> 00:01:50,200 PROGRAM EVALUATION DIVISION, 57 00:01:50,200 --> 00:01:51,920 WHERE I HAVE HELPED DESIGN AND 58 00:01:51,920 --> 00:01:53,200 MANAGE THE DEPARTMENT'S LARGE 59 00:01:53,200 --> 00:01:54,440 RESEARCH STUDIES. 60 00:01:54,440 --> 00:01:56,200 IN THAT CAPACITY, I REALLY 61 00:01:56,200 --> 00:01:57,080 WORKED AT THE INTERSECTION OF 62 00:01:57,080 --> 00:01:59,320 HOUSING AND HEALTH. 63 00:01:59,320 --> 00:02:00,400 DURING MY TIME THERE, HUD'S 64 00:02:00,400 --> 00:02:02,080 INTEREST IN HEALTH AND USING 65 00:02:02,080 --> 00:02:04,200 HOUSING AS A PLATFORM FOR HEALTH 66 00:02:04,200 --> 00:02:05,720 AND IMPROVING THE QUALITY OF 67 00:02:05,720 --> 00:02:08,280 PEOPLE'S LIVES HAS ONLY GROWN, 68 00:02:08,280 --> 00:02:09,360 AND THAT'S WHERE I'VE DONE MOST 69 00:02:09,360 --> 00:02:10,800 OF MY WORK, ESPECIALLY AT THE 70 00:02:10,800 --> 00:02:11,600 INTERSECTION OF HEALTH AND 71 00:02:11,600 --> 00:02:12,880 HOUSING AND THINKING ABOUT HOW 72 00:02:12,880 --> 00:02:14,320 TO SUPPORT OLDER ADULTS TO AGE 73 00:02:14,320 --> 00:02:15,000 IN THEIR COMMUNITIES. 74 00:02:15,000 --> 00:02:16,280 BUT I HAVE WORKED ACROSS A 75 00:02:16,280 --> 00:02:18,320 VARIETY OF PROJECTS, INCLUDING 76 00:02:18,320 --> 00:02:21,120 MOST RECENTLY ON A DEMONSTRATION 77 00:02:21,120 --> 00:02:23,960 TO HELP FAMILIES WITH CHILDREN 78 00:02:23,960 --> 00:02:26,800 ACCESS HIGHER OPPORTUNITY AREAS. 79 00:02:26,800 --> 00:02:28,520 I HAVE A BACHELOR OF 80 00:02:28,520 --> 00:02:29,280 SCIENCE DEGREE IN PSYCHOLOGY 81 00:02:29,280 --> 00:02:31,160 FROM VIRGINIA TECH, AND I EARNED 82 00:02:31,160 --> 00:02:33,120 MY PH.D. IN NEUROSCIENCE FROM 83 00:02:33,120 --> 00:02:33,600 GEORGETOWN UNIVERSITY. 84 00:02:33,600 --> 00:02:35,480 IN THAT CAPACITY, BOTH AS A 85 00:02:35,480 --> 00:02:37,360 RESEARCH ASSISTANT AND LATER AS 86 00:02:37,360 --> 00:02:38,800 A PH.D. CANDIDATE, I WORKED ON A 87 00:02:38,800 --> 00:02:40,440 VARIETY OF COGNITIVE 88 00:02:40,440 --> 00:02:41,360 NEUROSCIENCE RESEARCH STUDIES 89 00:02:41,360 --> 00:02:43,320 INCLUDING SOME STUDIES WITH 90 00:02:43,320 --> 00:02:44,200 CHILDREN WITH AUTISM. 91 00:02:44,200 --> 00:02:46,760 SO I'M REALLY EXCITED AND 92 00:02:46,760 --> 00:02:48,800 HUMBLED TO BE JOINING COMMITTEE 93 00:02:48,800 --> 00:02:50,080 AND THINKING ABOUT MY PREVIOUS 94 00:02:50,080 --> 00:02:50,960 RESEARCH EXPERIENCE AND LOOKING 95 00:02:50,960 --> 00:02:53,680 AT IT THROUGH A NEW LENS AS PART 96 00:02:53,680 --> 00:02:54,240 OF HUD. 97 00:02:54,240 --> 00:02:55,840 SO THANK YOU VERY MUCH. 98 00:02:55,840 --> 00:02:58,080 >>WELL, THANK YOU, DR. LOZIER, 99 00:02:58,080 --> 00:02:59,040 AND OF COURSE WE KNOW HOW 100 00:02:59,040 --> 00:03:00,960 IMPORTANT HOUSING IS FOR MEMBERS 101 00:03:00,960 --> 00:03:02,840 IN THE AUTISM COMMUNITY, 102 00:03:02,840 --> 00:03:03,680 ESPECIALLY AS THEY REACH 103 00:03:03,680 --> 00:03:04,880 ADULTHOOD. 104 00:03:04,880 --> 00:03:07,600 AND SO WE APPRECIATE HUD'S 105 00:03:07,600 --> 00:03:08,480 CONTINUED PARTICIPATION AND I 106 00:03:08,480 --> 00:03:11,280 WANT TO THANK DR. TERESA SOUZA, 107 00:03:11,280 --> 00:03:17,280 THE PREVIOUS IACC MEMBER FOR HER 108 00:03:17,280 --> 00:03:18,080 PAST SERVICE TO THE COMMITTEE. 109 00:03:18,080 --> 00:03:19,520 WE ALSO WANT TO ANNOUNCE SOME 110 00:03:19,520 --> 00:03:20,520 MEMBERS WHO HAVE CHANGED 111 00:03:20,520 --> 00:03:21,280 POSITIONS SINCE OUR LAST 112 00:03:21,280 --> 00:03:22,200 MEETING. 113 00:03:22,200 --> 00:03:23,840 DR. SUSAN RIVERA IS NOW 114 00:03:23,840 --> 00:03:24,760 PROFESSOR OF PSYCHOLOGY AND THE 115 00:03:24,760 --> 00:03:25,880 DEAN OF THE COLLEGE OF 116 00:03:25,880 --> 00:03:26,800 BEHAVIORAL AND SOCIAL SCIENCES 117 00:03:26,800 --> 00:03:28,720 AT THE UNIVERSITY OF MARYLAND. 118 00:03:28,720 --> 00:03:32,040 CONGRATULATIONS, DR. RIVERA. 119 00:03:32,040 --> 00:03:33,840 AND DR. JENNY MAI PHAN IS NOW A 120 00:03:33,840 --> 00:03:35,360 POSTDOCTORAL FELLOW IN THE 121 00:03:35,360 --> 00:03:36,920 CENTER FOR AUTISM SPECTRUM 122 00:03:36,920 --> 00:03:38,080 DISORDERS AT CHILDREN'S NATIONAL 123 00:03:38,080 --> 00:03:39,680 HOSPITAL RIGHT HERE IN 124 00:03:39,680 --> 00:03:40,680 WASHINGTON, D.C. 125 00:03:40,680 --> 00:03:41,200 CONGRATULATIONS TO YOU AND 126 00:03:41,200 --> 00:03:42,160 ACTUALLY TO BOTH OF YOU ON YOUR 127 00:03:42,160 --> 00:03:43,520 NEW POSITIONS. 128 00:03:43,520 --> 00:03:46,480 IF ANY MEMBERS OF THE COMMITTEE 129 00:03:46,480 --> 00:03:47,840 HAVE SIMILAR ANNOUNCEMENTS YOU'D 130 00:03:47,840 --> 00:03:50,640 LIKE TO SHARE AT FUTURE IACC 131 00:03:50,640 --> 00:03:54,600 MEETINGS, PLEASE DO ALERT SUSAN. 132 00:03:54,600 --> 00:03:55,880 SO I WOULD LIKE TO START OFF THE 133 00:03:55,880 --> 00:03:57,480 MEETING WITH A SUMMARY OF WHAT 134 00:03:57,480 --> 00:03:59,160 WE'RE GOING TO BE DOING TODAY. 135 00:03:59,160 --> 00:04:00,440 WE'RE LOOKING FORWARD TO A 136 00:04:00,440 --> 00:04:03,080 VARIETY OF PRESENTATIONS, SOME 137 00:04:03,080 --> 00:04:04,400 ON SERVICES AND SOME ON THE 138 00:04:04,400 --> 00:04:04,960 LATEST SCIENCE. 139 00:04:04,960 --> 00:04:06,240 WE'RE GOING TO START THE MORNING 140 00:04:06,240 --> 00:04:08,720 WITH A RECOGNITION OF NATIONAL 141 00:04:08,720 --> 00:04:10,640 DISABILITY EMPLOYMENT AWARENESS 142 00:04:10,640 --> 00:04:12,360 MONTH FROM THE DEPARTMENT OF 143 00:04:12,360 --> 00:04:12,880 LABOR. 144 00:04:12,880 --> 00:04:15,400 AND A PRESENTATION ON 145 00:04:15,400 --> 00:04:16,080 EMPLOYMENT-FOCUSED AUTISM 146 00:04:16,080 --> 00:04:16,760 RESEARCH. 147 00:04:16,760 --> 00:04:18,480 WE'LL ALSO CONTINUE WORKING ON 148 00:04:18,480 --> 00:04:21,040 ONE OF OUR KEY ASSIGNMENTS, THE 149 00:04:21,040 --> 00:04:22,360 IACC STRATEGIC PLAN. 150 00:04:22,360 --> 00:04:24,280 I WANT TO THANK ALL OF YOU FOR 151 00:04:24,280 --> 00:04:26,560 YOUR WORK OVER THE SUMMER AND 152 00:04:26,560 --> 00:04:28,000 FOR COMING TO THE MEETING THAT 153 00:04:28,000 --> 00:04:31,160 WE HELD IN JULY TO DO SOME 154 00:04:31,160 --> 00:04:32,400 FOCUSED WORK ON THE PLAN. 155 00:04:32,400 --> 00:04:35,320 AND THERE ARE SOME PUBLIC 156 00:04:35,320 --> 00:04:36,280 COMMENTS ABOUT THAT WORK AS 157 00:04:36,280 --> 00:04:37,240 WELL, SO WE'LL HAVE AN 158 00:04:37,240 --> 00:04:38,440 OPPORTUNITY TO DISCUSS THE PLAN 159 00:04:38,440 --> 00:04:40,240 DURING OUR WORK SESSION AS WELL 160 00:04:40,240 --> 00:04:42,560 AS DURING THE PUBLIC COMMENTS. 161 00:04:42,560 --> 00:04:44,480 THIS AFTERNOON WE'LL ALSO BE 162 00:04:44,480 --> 00:04:45,280 HEARING OTHER PUBLIC COMMENTS 163 00:04:45,280 --> 00:04:47,240 AND HEARING PRESENTATIONS ABOUT 164 00:04:47,240 --> 00:04:49,640 AUTISM IN OLDER ADULTS, 165 00:04:49,640 --> 00:04:53,560 INCLUDING THE VICE VOIC VOICES F 166 00:04:53,560 --> 00:04:54,440 SCIENTISTS AND INDIVIDUALS WITH 167 00:04:54,440 --> 00:04:55,760 LIVED EXPERIENCE. 168 00:04:55,760 --> 00:04:57,320 I'LL TURN IT OVER NOW TO SUSAN 169 00:04:57,320 --> 00:04:58,760 FOR OPENING REMARKS AND FOR 170 00:04:58,760 --> 00:05:00,280 APPROVAL OF THE MINUTES FROM OUR 171 00:05:00,280 --> 00:05:01,520 LAST MEETING, WHICH TOOK PLACE 172 00:05:01,520 --> 00:05:02,120 IN APRIL. 173 00:05:02,120 --> 00:05:02,880 SUSAN? 174 00:05:02,880 --> 00:05:04,760 >>THANK YOU, DR. GORDON. 175 00:05:04,760 --> 00:05:06,480 I ALSO WANT TO WELCOME EVERYONE 176 00:05:06,480 --> 00:05:08,120 TO THIS MEETING TODAY, AND WE 177 00:05:08,120 --> 00:05:09,640 HAVE SOME EXCITING PRESENTATIONS 178 00:05:09,640 --> 00:05:12,280 ON THE AGENDA AND ARE PLEASED TO 179 00:05:12,280 --> 00:05:12,920 RECOGNIZE NATIONAL DISABILITY 180 00:05:12,920 --> 00:05:14,720 EMPLOYMENT AWARENESS MONTH HERE 181 00:05:14,720 --> 00:05:16,000 AT THIS MEETING. 182 00:05:16,000 --> 00:05:17,680 AND LOOKING FORWARD TO THE 183 00:05:17,680 --> 00:05:19,560 PRESENTATIONS RELATED TO THAT. 184 00:05:19,560 --> 00:05:20,920 I ALSO WANT TO THANK EVERYONE 185 00:05:20,920 --> 00:05:23,640 WHO PARTICIPATED IN THE JULY 186 00:05:23,640 --> 00:05:26,160 WORKING GROUP MEETING FOR THE 187 00:05:26,160 --> 00:05:26,520 STRATEGIC PLAN. 188 00:05:26,520 --> 00:05:28,000 IT WAS A VERY PRODUCTIVE MEETING 189 00:05:28,000 --> 00:05:31,280 AND I REALLY APPRECIATE 190 00:05:31,280 --> 00:05:32,200 EVERYONE'S ENGAGEMENT AND SOME 191 00:05:32,200 --> 00:05:33,600 OF THE FOLLOW-UP THAT YOU DID 192 00:05:33,600 --> 00:05:34,520 AFTERWARD, AND WE'LL BE TALKING 193 00:05:34,520 --> 00:05:36,120 ABOUT THAT IN OUR COMMITTEE 194 00:05:36,120 --> 00:05:37,320 BUSINESS TODAY. 195 00:05:37,320 --> 00:05:39,160 WE WILL BE TALKING ABOUT THE 196 00:05:39,160 --> 00:05:40,920 STRATEGIC PLAN LATER. 197 00:05:40,920 --> 00:05:42,680 SO IF YOU WERE UNABLE TO ATTEND 198 00:05:42,680 --> 00:05:43,680 OR WOULD LIKE MORE INFORMATION 199 00:05:43,680 --> 00:05:45,000 ABOUT THAT MEETING, YOU CAN GO 200 00:05:45,000 --> 00:05:46,640 TO OUR WEBSITE AND THERE'S SOME 201 00:05:46,640 --> 00:05:48,880 INFORMATION THERE IN THE VIDEOS 202 00:05:48,880 --> 00:05:50,320 OF COURSE POSTED FOR ANYONE 203 00:05:50,320 --> 00:05:51,280 WHO'S LISTENING. 204 00:05:51,280 --> 00:05:52,440 ALSO WELCOME TO ALL OF OUR 205 00:05:52,440 --> 00:05:54,600 LISTENING AUDIENCE TODAY. 206 00:05:54,600 --> 00:05:57,120 SO JUST A COUPLE OF HOUSEKEEPING 207 00:05:57,120 --> 00:05:57,720 REMINDERS. 208 00:05:57,720 --> 00:05:59,360 PLEASE KEEP YOUR MICROPHONES OFF 209 00:05:59,360 --> 00:06:01,400 UNLESS YOU'RE SPEAKING, AND WE 210 00:06:01,400 --> 00:06:02,960 ASK THAT YOU KEEP YOUR CAMERAS 211 00:06:02,960 --> 00:06:04,680 OFF DURING THE PRESENTATIONS AND 212 00:06:04,680 --> 00:06:05,640 BREAKS. 213 00:06:05,640 --> 00:06:07,160 AND OF COURSE IF YOU ARE 214 00:06:07,160 --> 00:06:08,400 SPEAKING, YOU'RE WELCOME TO TURN 215 00:06:08,400 --> 00:06:11,040 YOUR CAMERA ON AND IF ANYONE IS 216 00:06:11,040 --> 00:06:11,800 FEELING ZOOM FATIGUE OR STRESS 217 00:06:11,800 --> 00:06:12,880 ABOUT BEING ON CAMERA, YOU DON'T 218 00:06:12,880 --> 00:06:14,920 NEED TO BE ON CAMERA, YOU CAN 219 00:06:14,920 --> 00:06:16,040 LEAVE YOUR CAMERA OFF IF YOU 220 00:06:16,040 --> 00:06:16,720 NEED TO. 221 00:06:16,720 --> 00:06:18,240 AND IF YOU ARE A COMMITTEE 222 00:06:18,240 --> 00:06:20,200 MEMBER OR FEDERAL ALTERNATE WHO 223 00:06:20,200 --> 00:06:21,840 WOULD LIKE TO CONTRIBUTE A 224 00:06:21,840 --> 00:06:23,640 COMMENT IN WRITING DURING A 225 00:06:23,640 --> 00:06:26,440 DISCUSSION VERSUS SPEAKING 226 00:06:26,440 --> 00:06:28,960 ORALLY AND PUTTING UP YOUR HAND, 227 00:06:28,960 --> 00:06:32,920 PLEASE RAISE YOUR HAND, AND YOU 228 00:06:32,920 --> 00:06:34,640 CAN -- WELL, YOU CAN RAISE YOUR 229 00:06:34,640 --> 00:06:36,360 HAND AND WE CAN CALL ON YOU, OR 230 00:06:36,360 --> 00:06:40,160 YOU CAN SEND YOUR COMMENT TO 231 00:06:40,160 --> 00:06:41,680 SEND COMMENTS HERE, WHICH IS -- 232 00:06:41,680 --> 00:06:46,400 INSOME, YOUIN ZOOM YOU WILL SEEN 233 00:06:46,400 --> 00:06:47,080 LISTED. 234 00:06:47,080 --> 00:06:48,960 THAT IS A STAFF MEMBER FROM OUR 235 00:06:48,960 --> 00:06:51,920 TEAM, STEVEN ISAACSON WHO WILL 236 00:06:51,920 --> 00:06:54,560 SEE ANY OF THE CHATS YOU SEND 237 00:06:54,560 --> 00:06:56,080 THROUGH TO HIM AND HE WILL BE 238 00:06:56,080 --> 00:06:58,600 ABLE TO READ THEM OUT IF YOU 239 00:06:58,600 --> 00:06:59,800 PREFER THAT METHOD OF 240 00:06:59,800 --> 00:07:00,320 COMMUNICATION DURING THE 241 00:07:00,320 --> 00:07:03,800 DISCUSSION. 242 00:07:03,800 --> 00:07:05,520 AND STEVEN SEND COMMENTS HERE 243 00:07:05,520 --> 00:07:06,720 CAN HELP WITH ANY TECHNICAL 244 00:07:06,720 --> 00:07:07,840 ISSUES AND PASS THAT ON TO THE 245 00:07:07,840 --> 00:07:08,680 REST OF THE TEAM THAT CAN HELP 246 00:07:08,680 --> 00:07:09,640 YOU IF YOU'RE HAVING ANY 247 00:07:09,640 --> 00:07:10,720 PROBLEMS. 248 00:07:10,720 --> 00:07:12,400 I'D LIKE THE TEAM ALSO TO KNOW 249 00:07:12,400 --> 00:07:14,600 RIGHT NOW THERE ARE SOME PEOPLE 250 00:07:14,600 --> 00:07:15,600 THAT WERE HAVING TROUBLE WITH 251 00:07:15,600 --> 00:07:17,200 THE ZOOM LINK, SO PLEASE BE 252 00:07:17,200 --> 00:07:18,400 AWARE OF ANY KIND OF MESSAGES 253 00:07:18,400 --> 00:07:19,680 COMING IN FROM PEOPLE THAT NEED 254 00:07:19,680 --> 00:07:25,320 HELP WITH ZOOM. 255 00:07:25,320 --> 00:07:26,160 SO UNLESS THERE ARE ANY 256 00:07:26,160 --> 00:07:28,800 QUESTIONS ABOUT THAT, I WILL 257 00:07:28,800 --> 00:07:30,120 PROCEED WITH THE APPROVAL OF THE 258 00:07:30,120 --> 00:07:32,560 MINUTES FROM THE APRIL 2022 259 00:07:32,560 --> 00:07:33,960 MEETING, AND THE DRAFT MINUTES 260 00:07:33,960 --> 00:07:36,520 ARE POSTED ON OUR WEBSITE, AND 261 00:07:36,520 --> 00:07:39,280 YOU HAVE A LITTLE BIT OF A 262 00:07:39,280 --> 00:07:40,280 CHANCE TO LOOK AT THEM. 263 00:07:40,280 --> 00:07:44,360 I WANTED TO KNOW IF THERE ARE 264 00:07:44,360 --> 00:07:48,120 ANY COMMENTS, IS THERE ANY 265 00:07:48,120 --> 00:07:48,880 DISCUSSION ABOUT THE MINUTES 266 00:07:48,880 --> 00:07:56,760 THAT WE POSTED? 267 00:07:56,760 --> 00:07:57,960 AND WE HAVEN'T HEARD ANYTHING IN 268 00:07:57,960 --> 00:07:59,840 WRITING IN TERMS OF THE MINUTES. 269 00:07:59,840 --> 00:08:02,400 BUT IF THERE ISN'T ANY 270 00:08:02,400 --> 00:08:03,360 DISCUSSION OF THE MINUTE, CAN I 271 00:08:03,360 --> 00:08:05,080 GET A MOTION ON THE FLOOR TO 272 00:08:05,080 --> 00:08:09,040 ACCEPT THE MINUTES? 273 00:08:09,040 --> 00:08:10,920 >>I MOVE TO ACCEPT THE MINUTES. 274 00:08:10,920 --> 00:08:12,880 >>THANK YOU. 275 00:08:12,880 --> 00:08:13,200 A SECOND? 276 00:08:13,200 --> 00:08:15,600 >>THIS IS YETTA MYRICK. 277 00:08:15,600 --> 00:08:15,920 I'LL SECOND. 278 00:08:15,920 --> 00:08:17,040 >>THANK YOU. 279 00:08:17,040 --> 00:08:18,200 ALL IN FAVOR OF THIS, PLEASE 280 00:08:18,200 --> 00:08:19,760 RAISE YOUR HAND IN THE ZOOM 281 00:08:19,760 --> 00:08:30,240 FEATURE SO OUR TEAM CAN SEE. 282 00:08:30,240 --> 00:08:32,080 OKAY, THANK YOU. 283 00:08:32,080 --> 00:08:37,600 YOU CAN PUT YOUR HANDS DOWN. 284 00:08:37,600 --> 00:08:41,440 STWIS THERE ANYONE OPPOSED? 285 00:08:41,440 --> 00:08:42,360 JALYNN, I THINK YOU HAD YOUR 286 00:08:42,360 --> 00:08:43,600 HAND STILL UP. 287 00:08:43,600 --> 00:08:44,320 IS THERE ANYONE OPPOSED TO 288 00:08:44,320 --> 00:08:45,480 ACCEPTING THESE MINUTES AS THEY 289 00:08:45,480 --> 00:08:53,160 WERE PREPARED? 290 00:08:53,160 --> 00:08:55,200 AND ALISON, ARE YOU OPPOSED OR 291 00:08:55,200 --> 00:08:55,840 FOR THE MINUTES? 292 00:08:55,840 --> 00:08:56,200 OKAY. 293 00:08:56,200 --> 00:08:59,000 I DON'T SEE ANYBODY OPPOSED. 294 00:08:59,000 --> 00:08:59,880 IS THERE ANYONE THAT JUST WANTS 295 00:08:59,880 --> 00:09:03,160 TO ABSTAIN? 296 00:09:03,160 --> 00:09:04,640 SO I BELIEVE THEN UNANIMOUSLY, 297 00:09:04,640 --> 00:09:05,480 WE'RE ACCEPTING THE MINUTES. 298 00:09:05,480 --> 00:09:06,720 IT LOOKS LIKE THE MAJORITY OF 299 00:09:06,720 --> 00:09:07,760 THE COMMITTEE IS IN FAVOR OF 300 00:09:07,760 --> 00:09:08,120 THEM. 301 00:09:08,120 --> 00:09:09,440 SO THANK YOU VERY MUCH. 302 00:09:09,440 --> 00:09:10,680 WE ACCEPT THE MINUTES AND WE 303 00:09:10,680 --> 00:09:12,480 WILL POST THE FINAL VERSION 304 00:09:12,480 --> 00:09:13,800 AFTER THIS MEETING, BUT THE 305 00:09:13,800 --> 00:09:16,520 DRAFT WHICH IS BASICALLY THE 306 00:09:16,520 --> 00:09:18,120 SAME AS THE FINAL VERSION IS 307 00:09:18,120 --> 00:09:19,240 ALREADY POSTED FOR ANYONE WHO 308 00:09:19,240 --> 00:09:20,440 WANTS TO REVIEW WHAT HAPPENED AT 309 00:09:20,440 --> 00:09:21,080 THE LAST MEETING. 310 00:09:21,080 --> 00:09:22,320 THANK YOU SO MUCH, AND I'M 311 00:09:22,320 --> 00:09:24,920 TURNING IT BACK OVER TO JOSH. 312 00:09:24,920 --> 00:09:29,120 >>WELL, THANK YOU, SUSAN, AND 313 00:09:29,120 --> 00:09:30,440 THANKS TO THE COMMITTEE FOR 314 00:09:30,440 --> 00:09:31,640 ACCOMPLISHING THAT ONE LITTLE 315 00:09:31,640 --> 00:09:33,240 PIECE OF BUSINESS WE HAD TO DO 316 00:09:33,240 --> 00:09:36,520 BEFORE WE GET INTO SOME OF THE 317 00:09:36,520 --> 00:09:37,880 MORE ENTERTAINING AND 318 00:09:37,880 --> 00:09:41,320 INFORMATIVE PART OF OUR DAY. 319 00:09:41,320 --> 00:09:44,880 TO START, I'M REALLY PLEASED TO 320 00:09:44,880 --> 00:09:46,880 WELCOME MS. ANUPA GEEVARGHESE, 321 00:09:46,880 --> 00:09:48,760 THE CHIEF OF STAFF FOR THE 322 00:09:48,760 --> 00:09:50,400 OFFICE OF DISABILITY EMPLOYMENT 323 00:09:50,400 --> 00:09:51,720 POLICY AT THE U.S. DEPARTMENT OF 324 00:09:51,720 --> 00:09:55,920 LABOR. 325 00:09:55,920 --> 00:09:56,560 MS. GEEVARGHESE WILL BE SHARING 326 00:09:56,560 --> 00:09:57,960 A FEW WORDS WITH US IN 327 00:09:57,960 --> 00:09:59,000 RECOGNITION OF NATIONAL 328 00:09:59,000 --> 00:09:59,760 DISABILITY EMPLOYMENT AWARENESS 329 00:09:59,760 --> 00:10:04,800 MONTH. 330 00:10:04,800 --> 00:10:11,080 YOU'RE MUTED STILL. 331 00:10:11,080 --> 00:10:11,920 THERE YOU GO. 332 00:10:11,920 --> 00:10:15,160 >>THANK YOU. 333 00:10:15,160 --> 00:10:17,360 DR. GORDON, DR. DANIELS AND 334 00:10:17,360 --> 00:10:18,680 MEMBERS OF THE INTERAGENCY 335 00:10:18,680 --> 00:10:19,280 AUTISM COORDINATING COMMITTEE, 336 00:10:19,280 --> 00:10:21,440 FOR INVITING ME TO SPEAK TODAY. 337 00:10:21,440 --> 00:10:22,040 GOOD MORNING. 338 00:10:22,040 --> 00:10:24,120 MY NAME IS ANUPA GEEVARGHESE, 339 00:10:24,120 --> 00:10:27,400 AND I AM THE COME CHIEF OF STAFH 340 00:10:27,400 --> 00:10:28,560 THE OFFICE OF DISABILITY 341 00:10:28,560 --> 00:10:29,760 EMPLOYMENT POLICY. 342 00:10:29,760 --> 00:10:31,880 I AM THRILLED TO BE HERE ON 343 00:10:31,880 --> 00:10:33,280 BEHALF OF ASSISTANT SECRETARY 344 00:10:33,280 --> 00:10:35,680 FOR LABOR DISABILITY EMPLOYMENT 345 00:10:35,680 --> 00:10:37,200 POLICY TARYN WILLIAMS, AND TO 346 00:10:37,200 --> 00:10:39,840 SPEAK WITH ALL OF YOU ABOUT 347 00:10:39,840 --> 00:10:40,480 NATIONAL DISABILITY EMPLOYMENT 348 00:10:40,480 --> 00:10:42,480 AWARENESS MONTH. 349 00:10:42,480 --> 00:10:44,400 THE OFFICE OF DISABILITY 350 00:10:44,400 --> 00:10:50,800 EMPLOYMENT POLICY, OR ODEP IS 351 00:10:50,800 --> 00:10:54,160 THE ONLY FEDERAL REGULATORY 352 00:10:54,160 --> 00:10:55,480 AGENCY THAT COORDINATES WITH 353 00:10:55,480 --> 00:10:56,720 EMPLOYERS AT ALL LEVELS OF 354 00:10:56,720 --> 00:10:57,840 GOVERNMENT TO INCREASE WORKPLACE 355 00:10:57,840 --> 00:10:58,480 SUCCESS FOR PEOPLE WITH 356 00:10:58,480 --> 00:11:00,480 DISABILITIES. 357 00:11:00,480 --> 00:11:04,600 OUR GOALS AT ODEP ARE TO IMPROVE 358 00:11:04,600 --> 00:11:07,000 ACCESS AND OPPORTUNITY AND 359 00:11:07,000 --> 00:11:08,760 ADVANCE WORKFORCE INCLUSION FOR 360 00:11:08,760 --> 00:11:09,520 DIVERSE PEOPLE WITH 361 00:11:09,520 --> 00:11:11,600 DISABILITIES. 362 00:11:11,600 --> 00:11:13,400 THROUGH POLICY CHANGE, OUTREACH 363 00:11:13,400 --> 00:11:15,320 AND TECHNICAL ASSISTANCE. 364 00:11:15,320 --> 00:11:17,400 WE DO THIS BY PARTNERING WITH A 365 00:11:17,400 --> 00:11:20,320 WIDE RANGE OF STAKEHOLDERS, 366 00:11:20,320 --> 00:11:22,760 INCLUDING THE IACC. 367 00:11:22,760 --> 00:11:26,080 IT IS MY GREAT PLEASURE TO SPEAK 368 00:11:26,080 --> 00:11:26,600 ABOUT NATIONAL DISABILITY 369 00:11:26,600 --> 00:11:28,720 EMPLOYMENT AWARENESS MONTH, AND 370 00:11:28,720 --> 00:11:31,520 HOW WE COMMEMORATE ENDING THE 371 00:11:31,520 --> 00:11:33,880 VIRTUAL AND IN-PERSON EVENTS 372 00:11:33,880 --> 00:11:36,360 THROUGHOUT THE MONTH OF OCTOBER. 373 00:11:36,360 --> 00:11:38,480 WE HAVE ACTIVELY CELEBRATED THE 374 00:11:38,480 --> 00:11:41,320 INCLUSION OF PEOPLE WITH 375 00:11:41,320 --> 00:11:42,560 DISABILITIES IN THE WORKFORCE IN 376 00:11:42,560 --> 00:11:44,040 OCTOBER SINCE CONGRESS 377 00:11:44,040 --> 00:11:47,440 RECOGNIZED THE FIRST WEEK OF 378 00:11:47,440 --> 00:11:49,400 OCTOBER AS NATIONAL EMPLOY THE 379 00:11:49,400 --> 00:11:53,160 PHYSICALLY HANDICAPPED WEEK IN 380 00:11:53,160 --> 00:11:53,360 1945. 381 00:11:53,360 --> 00:11:54,800 THIS CELEBRATION EXPANDED TO 382 00:11:54,800 --> 00:11:56,520 PROMOTE THE EMPLOYMENT OF ALL 383 00:11:56,520 --> 00:12:01,320 PEOPLE IN 1962, AND IN 1988, IT 384 00:12:01,320 --> 00:12:03,520 TRANSFORMED INTO THE MONTH-LONG 385 00:12:03,520 --> 00:12:04,720 CELEBRATION WE ARE FAMILIAR WITH 386 00:12:04,720 --> 00:12:08,360 TODAY. 387 00:12:08,360 --> 00:12:10,160 THIS YEAR'S ENDING THEME, WHICH 388 00:12:10,160 --> 00:12:12,800 IS BEHIND ME, IS DISABILITY PART 389 00:12:12,800 --> 00:12:14,480 OF THE EQUITY EQUATION, AND IT 390 00:12:14,480 --> 00:12:17,400 FITS PERFECTLY WITH THE IACC'S 391 00:12:17,400 --> 00:12:19,400 EMPHASIS ON SUPPORTING 392 00:12:19,400 --> 00:12:20,920 DIVERSITY, EQUITY, INCLUSION, 393 00:12:20,920 --> 00:12:31,000 AND ACCESSIBILITY, O OR DEIA IN 394 00:12:31,000 --> 00:12:32,520 IMPROVING QUALITY OF LIFE. 395 00:12:32,520 --> 00:12:34,040 THIS HAS DEMONSTRATED COMMIT 396 00:12:34,040 --> 00:12:36,000 TOMENT INCREASING ACCESSIBILITY 397 00:12:36,000 --> 00:12:37,520 FOR DIVERSE JOB SEEKERS AND 398 00:12:37,520 --> 00:12:39,600 WORKERS. 399 00:12:39,600 --> 00:12:41,280 WHEN PRESIDENT BIDEN ISSUED HIS 400 00:12:41,280 --> 00:12:43,360 EXECUTIVE ORDER ON DIVERSITY, 401 00:12:43,360 --> 00:12:45,760 EQUITY, INCLUSION AND 402 00:12:45,760 --> 00:12:47,000 ACCESSIBILITY IN THE FEDERAL 403 00:12:47,000 --> 00:12:49,440 WORKFORCE, IT WAS THE FIRST TIME 404 00:12:49,440 --> 00:12:51,440 DISABILITY WAS INCLUDED IN OUR 405 00:12:51,440 --> 00:12:53,960 BROADER DEIA EFFORT FOR THE 406 00:12:53,960 --> 00:12:57,440 FEDERAL WORKFORCE. 407 00:12:57,440 --> 00:12:58,960 WE HAVE ALSO, AT THE DEPARTMENT 408 00:12:58,960 --> 00:13:01,840 OF LABOR, PRY PRIORITIZED OUR 409 00:13:01,840 --> 00:13:04,000 COMMITMENT TO DEIA THROUGH OUR 410 00:13:04,000 --> 00:13:06,360 GOOD JOBS INITIATIVE, AND OUR 411 00:13:06,360 --> 00:13:08,640 PROJECTS AT ODEP SUCH AS THE 412 00:13:08,640 --> 00:13:11,480 PARTNERSHIP ON INCLUSIVE 413 00:13:11,480 --> 00:13:13,720 APPRENTICESHIP, OR PIA. 414 00:13:13,720 --> 00:13:14,680 SUPPORTING NEURODIVERSITY AT 415 00:13:14,680 --> 00:13:17,600 WORK IS CRUCIAL TO OUR GOAL TO 416 00:13:17,600 --> 00:13:20,080 PROMOTE SOLUTIONS FOR THE EQUITY 417 00:13:20,080 --> 00:13:22,160 EQUATION AND ENSURE DIVERSE 418 00:13:22,160 --> 00:13:25,120 PEOPLE WITH DISABILITIES CAN 419 00:13:25,120 --> 00:13:29,000 FULLY ACCESS GAINFUL EMPLOYMENT 420 00:13:29,000 --> 00:13:32,840 OPPORTUNITIES AND CAREER 421 00:13:32,840 --> 00:13:33,080 PATHWAYS. 422 00:13:33,080 --> 00:13:35,320 EARLIER THIS MONTH, ODEP HOSTED 423 00:13:35,320 --> 00:13:39,200 AN ENDING EMPLOYER CHAT ON 424 00:13:39,200 --> 00:13:40,240 WORKPLACE MENTAL HEALTH AND 425 00:13:40,240 --> 00:13:42,720 WELL-BEING, WHICH FEATURED 426 00:13:42,720 --> 00:13:44,520 REMARKS BY MARTY WALSH, THOUGHT 427 00:13:44,520 --> 00:13:46,280 LEADERS FROM INDUSTRY, ADVOCACY 428 00:13:46,280 --> 00:13:47,840 AND LABOR MOVEMENTS, AND 429 00:13:47,840 --> 00:13:49,520 ASSISTANT SECRETARY TARYN 430 00:13:49,520 --> 00:13:51,840 WILLIAMS. 431 00:13:51,840 --> 00:13:54,280 WE RECOGNIZE THAT PEOPLE WHO ARE 432 00:13:54,280 --> 00:13:55,360 NEURODIVERGENT, INCLUDING YOUTH 433 00:13:55,360 --> 00:13:57,280 AND ADULTS ON THE AUTISM 434 00:13:57,280 --> 00:13:59,800 SPECTRUM, CAN FACE MAJOR 435 00:13:59,800 --> 00:14:02,120 BARRIERS TO ATTAIN AND MAINTAIN 436 00:14:02,120 --> 00:14:05,280 JOBS THAT FIT THEIR INTERESTS, 437 00:14:05,280 --> 00:14:09,480 STRENGTHS, SKILLS, AND TALENTS. 438 00:14:09,480 --> 00:14:10,880 MANY AUTISTIC PEOPLE REMAIN 439 00:14:10,880 --> 00:14:13,240 UNEMPLOYED OR UNDEREMPLOYED, AND 440 00:14:13,240 --> 00:14:14,720 LACK ACCESS TO THE NEEDED 441 00:14:14,720 --> 00:14:17,000 SUPPORT SYSTEMS TO HELP ENSURE 442 00:14:17,000 --> 00:14:19,560 WORKPLACE SUCCESS. 443 00:14:19,560 --> 00:14:21,720 THAT'S WHY RECENTLY, ODEP'S 444 00:14:21,720 --> 00:14:23,160 EMPLOYER ASSISTANCE AND RESOURCE 445 00:14:23,160 --> 00:14:27,000 NETWORK ON DISABILITY INCLUSION, 446 00:14:27,000 --> 00:14:30,160 OR EARN, OUR TECHNICAL 447 00:14:30,160 --> 00:14:31,440 ASSISTANCE CENTER FOR EMPLOYERS, 448 00:14:31,440 --> 00:14:34,160 LAUNCHED IT'S REDESIGNED GUIDE 449 00:14:34,160 --> 00:14:35,000 TO NEURODIVERSITY IN THE 450 00:14:35,000 --> 00:14:35,400 WORKPLACE. 451 00:14:35,400 --> 00:14:38,320 THIS TOOLKIT INCLUDES 452 00:14:38,320 --> 00:14:41,720 INFORMATION ABOUT ORGANIZATIONAL 453 00:14:41,720 --> 00:14:43,080 AND EMPLOYEE BENEFITS FOR 454 00:14:43,080 --> 00:14:44,880 NEURODIVERSITY AT WORK, AND 455 00:14:44,880 --> 00:14:47,680 APPROACHES AND PRACTICES FOR 456 00:14:47,680 --> 00:14:49,360 MANAGEMENT, PEER TRAINING AND 457 00:14:49,360 --> 00:14:50,240 MENTORING. 458 00:14:50,240 --> 00:14:52,800 IT ALSO SPOTLIGHTS HIRING AND 459 00:14:52,800 --> 00:14:54,440 RECRUITMENT PROGRAMS FOR 460 00:14:54,440 --> 00:14:56,280 NEURODIVERSITY AT WORK IN THE 461 00:14:56,280 --> 00:14:57,640 FEDERAL GOVERNMENT, AND ACROSS 462 00:14:57,640 --> 00:15:04,520 THE INDUSTRY. 463 00:15:04,520 --> 00:15:10,320 NADALSO FEATURING INFORMATION AD 464 00:15:10,320 --> 00:15:11,480 RESOURCES ON HOW TO SUPPORT 465 00:15:11,480 --> 00:15:12,440 WORKERS WITH DISABILITIES, 466 00:15:12,440 --> 00:15:13,920 INCLUDING PEOPLE WHO ARE 467 00:15:13,920 --> 00:15:17,520 NEURODIVERGENT. 468 00:15:17,520 --> 00:15:18,160 SPECIALISTS ARE AVAILABLE TO 469 00:15:18,160 --> 00:15:20,120 PROVIDE FREE, CONFIDENTIAL AND 470 00:15:20,120 --> 00:15:21,000 EXPERT GUIDANCE. 471 00:15:21,000 --> 00:15:25,040 AS WELL, JAN HAS A FANTASTIC A 472 00:15:25,040 --> 00:15:26,520 TO Z GUIDE ON ACCOMMODATIONS FOR 473 00:15:26,520 --> 00:15:28,240 PEOPLE WITH DISABILITIES. 474 00:15:28,240 --> 00:15:29,960 THIS MORNING, WE'RE EXCITED TO 475 00:15:29,960 --> 00:15:32,680 SHARE THAT YOU'LL BE HEARING A 476 00:15:32,680 --> 00:15:36,640 PRESENTATION BY MATHEMATICA 477 00:15:36,640 --> 00:15:40,200 ABOUT ITS AUTISM-FOCUSED WORK 478 00:15:40,200 --> 00:15:42,920 INCLUDING AN ODEP SUPPORTED 479 00:15:42,920 --> 00:15:47,600 PROJECT FOR EMPLOYMENT RESOURCES 480 00:15:47,600 --> 00:15:49,600 FOR THOSE ON THE AUTISM 481 00:15:49,600 --> 00:15:49,880 SPECTRUM. 482 00:15:49,880 --> 00:15:52,040 WE'RE THRILLED BY THE WORK OF 483 00:15:52,040 --> 00:15:54,880 THE PROJECT TEAM ABOUT HOW TO 484 00:15:54,880 --> 00:15:55,680 IMPROVE ACCESS TO JOB 485 00:15:55,680 --> 00:15:56,720 OPPORTUNITIES AND CAREERS FOR 486 00:15:56,720 --> 00:15:57,880 DIVERSE YOUTH AND YOUNG ADULTS 487 00:15:57,880 --> 00:16:01,400 ON THE AUTISM SPECTRUM. 488 00:16:01,400 --> 00:16:03,400 ASSISTANT SECRETARY WILLIAMS AND 489 00:16:03,400 --> 00:16:05,320 I ENCOURAGE ALL OF YOU TO HELP 490 00:16:05,320 --> 00:16:09,040 US PUT THE A FOR ACCESSIBILITY 491 00:16:09,040 --> 00:16:12,720 INTO DEIA, AND HELP MAKE 492 00:16:12,720 --> 00:16:13,760 DISABILITY A KEY COMPONENT OF 493 00:16:13,760 --> 00:16:20,480 THE EQUITY EQUATION BY HOSTING 494 00:16:20,480 --> 00:16:21,200 NDEAM EVENTS DURING THE 495 00:16:21,200 --> 00:16:22,440 REMAINDER OF OCTOBER AND OF 496 00:16:22,440 --> 00:16:23,160 COURSE CELEBRATING THROUGHOUT 497 00:16:23,160 --> 00:16:24,200 THE YEAR. 498 00:16:24,200 --> 00:16:27,280 WE CANNOT HAVE FULL INCLUSION IN 499 00:16:27,280 --> 00:16:29,560 THE WORKPLACE UNLESS WE HAVE 500 00:16:29,560 --> 00:16:30,000 ACCESSIBILITY. 501 00:16:30,000 --> 00:16:32,640 THAT'S WHY WE MUST HIGHLIGHT THE 502 00:16:32,640 --> 00:16:34,440 NEED FOR WORKERS WITH 503 00:16:34,440 --> 00:16:37,240 DISABILITIES TO ACCESS INCLUSIVE 504 00:16:37,240 --> 00:16:39,560 WORKPLACES AND RECEIVE WORKPLACE 505 00:16:39,560 --> 00:16:41,480 ACCOMMODATIONS THAT WE KNOW CAN 506 00:16:41,480 --> 00:16:43,600 HELP DRIVE JOB SUCCESS. 507 00:16:43,600 --> 00:16:46,200 PLEASE MAKE SURE TO VISIT OUR 508 00:16:46,200 --> 00:16:48,720 ODEP WEBPAGE FOR ENDING TO 509 00:16:48,720 --> 00:16:51,160 DOWNLOAD THE ENDING POSERS IN 510 00:16:51,160 --> 00:16:52,880 ENGLISH AND SPANISH, WATCH A 511 00:16:52,880 --> 00:16:55,320 SHORT BUT FABULOUS VIDEO ON 512 00:16:55,320 --> 00:16:58,160 NDEAM AND FIND OTHER NDEAM 513 00:16:58,160 --> 00:17:02,640 RESOURCES, SUCH AS A SOCIAL 514 00:17:02,640 --> 00:17:03,240 MEDIA -- THANK YOU FOR ALL THE 515 00:17:03,240 --> 00:17:04,960 WORK YOU DO FOR SUPPORTING FULL 516 00:17:04,960 --> 00:17:06,680 AND INCLUSIVE ACCESS TO 517 00:17:06,680 --> 00:17:07,240 EMPLOYMENT OPPORTUNITIES FOR 518 00:17:07,240 --> 00:17:08,880 YOUTH AND ADULTS WITH 519 00:17:08,880 --> 00:17:10,240 DISABILITIES, INCLUDING AUTISTIC 520 00:17:10,240 --> 00:17:13,560 PEOPLE, AND HAPPY NDEAM. 521 00:17:13,560 --> 00:17:14,600 THANK YOU. 522 00:17:14,600 --> 00:17:15,840 >>THANK YOU VERY MUCH FOR 523 00:17:15,840 --> 00:17:17,480 JOINING US TODAY, AND FOR THAT 524 00:17:17,480 --> 00:17:18,200 MESSAGE. 525 00:17:18,200 --> 00:17:20,360 WE'RE GOING TO BUILD ON THAT 526 00:17:20,360 --> 00:17:21,440 MESSAGE NOW. 527 00:17:21,440 --> 00:17:23,480 IT'S REALLY MY PLEASURE TO 528 00:17:23,480 --> 00:17:25,640 INTRODUCE THE NEXT SET OF 529 00:17:25,640 --> 00:17:26,560 PRESENTATIONS WHICH IS GOING TO 530 00:17:26,560 --> 00:17:30,440 FOCUS ON AUTISM-RO-RELATED RESEH 531 00:17:30,440 --> 00:17:34,200 AT MATHEMATICA, A COMPANY THAT 532 00:17:34,200 --> 00:17:37,120 DOES -- THAT PROVIDES SOFTWARE 533 00:17:37,120 --> 00:17:37,720 FOR MATHEMATICAL SOLUTIONS FOR A 534 00:17:37,720 --> 00:17:40,760 RANGE OF PROBLEMS. 535 00:17:40,760 --> 00:17:42,360 OUR FIRST SPEAKER TO INTRODUCE 536 00:17:42,360 --> 00:17:44,720 THE PRESENTATION WILL BE SCOTT 537 00:17:44,720 --> 00:17:46,120 ROBERTSON. 538 00:17:46,120 --> 00:17:46,920 DR. SCOTT ROBERTSON. 539 00:17:46,920 --> 00:17:48,800 A SENIOR POLICY ADVISOR IN THE 540 00:17:48,800 --> 00:17:50,120 OFFICE OF DISABILITY EMPLOYMENT 541 00:17:50,120 --> 00:17:51,280 POLICY AT THE DEPARTMENT OF 542 00:17:51,280 --> 00:17:53,120 LABOR, AND HE IS AN ALTERNATE 543 00:17:53,120 --> 00:17:55,240 MEMBER OF THE IACC AND ALSO AN 544 00:17:55,240 --> 00:17:58,040 YOAUTISTIC SELF-ADVOCATE. 545 00:17:58,040 --> 00:18:00,040 DR. ROBERTSON WILL BE PROVIDING 546 00:18:00,040 --> 00:18:02,120 THE INTRODUCTION. 547 00:18:02,120 --> 00:18:03,960 THE PRESENTATION FROM OUR GUEST 548 00:18:03,960 --> 00:18:10,680 SPEAKERS FROM MATHEMATICA, 549 00:18:10,680 --> 00:18:14,480 DR. ANKITA PATNAIK, AND PAUL 550 00:18:14,480 --> 00:18:15,760 SHATTUCK, WHO MANY MAY HAVE 551 00:18:15,760 --> 00:18:22,600 KNOWN FR, NOW A SENIOR FELLOW AT 552 00:18:22,600 --> 00:18:23,200 MATHEMATICA. 553 00:18:23,200 --> 00:18:24,400 WELCOME TO YOU ALL. 554 00:18:24,400 --> 00:18:25,400 DR. ROBERTSON, PLEASE, GET US 555 00:18:25,400 --> 00:18:26,480 STARTED. 556 00:18:26,480 --> 00:18:28,240 >>GREAT. 557 00:18:28,240 --> 00:18:30,800 THANK YOU, DR. GORDON, FOR THAT 558 00:18:30,800 --> 00:18:33,200 GREAT INTRO, AND I WILL JUST 559 00:18:33,200 --> 00:18:36,800 BRIEFLY BE SHARING A LITTLE BIT 560 00:18:36,800 --> 00:18:37,560 MORE ABOUT THE BACKGROUNDS OF 561 00:18:37,560 --> 00:18:39,680 OUR PRESENTERS AND WHY THE 562 00:18:39,680 --> 00:18:41,280 OFFICE OF DISABILITY EMPLOYMENT 563 00:18:41,280 --> 00:18:44,520 POLICY, ODEP, WHILE WE WERE 564 00:18:44,520 --> 00:18:45,800 MAKING A -- HAVE BEEN MAKING A 565 00:18:45,800 --> 00:18:47,160 MAJOR INVESTMENT IN THAT PROJECT 566 00:18:47,160 --> 00:18:48,160 ON RESEARCH SUPPORT SERVICES FOR 567 00:18:48,160 --> 00:18:49,320 EMPLOYMENT OF YOUNG ADULTS ON 568 00:18:49,320 --> 00:18:52,080 THE AUTISM SPECTRUM, AND FOR 569 00:18:52,080 --> 00:18:54,160 THOSE WHO DO NOT KNOW ME, I AM A 570 00:18:54,160 --> 00:18:57,000 WHITE AUTISTIC MAN WITH BLUE 571 00:18:57,000 --> 00:18:58,400 EYES, BROWN HAIR AND GLASSES AND 572 00:18:58,400 --> 00:19:00,560 I'M WEARING A CHECKED SHIRT AND 573 00:19:00,560 --> 00:19:02,640 A DARK JACKET, AND AS DR. GORDON 574 00:19:02,640 --> 00:19:04,120 MENTIONED, I AM A SENIOR POLICY 575 00:19:04,120 --> 00:19:06,440 ADVISOR IN ODEP, AND A POINT FOR 576 00:19:06,440 --> 00:19:08,480 MUCH OF OUR WORK ON SUPPORTING 577 00:19:08,480 --> 00:19:09,560 NEURODIVERSITY IN THE WORKPLACE, 578 00:19:09,560 --> 00:19:12,800 AND THE ODEP HOST FOR NATIONAL 579 00:19:12,800 --> 00:19:13,640 DISABILITY EMPLOYMENT AWARENESS 580 00:19:13,640 --> 00:19:16,000 MONTH IS BEHIND ME AS MY VIRTUAL 581 00:19:16,000 --> 00:19:16,520 BACKGROUND TODAY. 582 00:19:16,520 --> 00:19:18,320 AND I HAVE THAT GREAT HONOR 583 00:19:18,320 --> 00:19:20,720 TODAY TO INTRODUCE OUR NEXT 584 00:19:20,720 --> 00:19:21,440 PRESENTATION FROM MATHEMATICA, 585 00:19:21,440 --> 00:19:26,960 WHICH WILL BE CO-PRESENTED AND 586 00:19:26,960 --> 00:19:28,760 HOPEFULLY -- I DON'T DO INTROS 587 00:19:28,760 --> 00:19:31,160 THAT OFTEN, I HOPE I DON'T MESS 588 00:19:31,160 --> 00:19:32,880 UP ON NAMES HERE, I HAVE 589 00:19:32,880 --> 00:19:34,840 PRONUNCIATION IN MY TALKING 590 00:19:34,840 --> 00:19:36,080 POINTS, IT'S NOT MY GREATEST 591 00:19:36,080 --> 00:19:37,640 STRENGTH IN TERMS OF PRONOUNCING 592 00:19:37,640 --> 00:19:39,480 THINGS RIGHT SO I APOLOGIZE IF I 593 00:19:39,480 --> 00:19:45,200 MAKE ANY MISTAKE HERE, IS DRS. 594 00:19:45,200 --> 00:19:49,920 ANKITA PATNAIK AND PAUL 595 00:19:49,920 --> 00:19:50,240 SHATTUCK. 596 00:19:50,240 --> 00:19:53,520 AND THIS PRESENTATION WILL 597 00:19:53,520 --> 00:19:56,920 DISCUSS THE OFTION OF RESEARCH 598 00:19:56,920 --> 00:19:59,720 AT MATH MA KA, INCLUDING 599 00:19:59,720 --> 00:20:01,040 RESEARCH ON EMPLOYMENT OF YOUNG 600 00:20:01,040 --> 00:20:03,040 ADULTS ON THE AUTISM SPECTRUM. 601 00:20:03,040 --> 00:20:04,880 I WOULD LIKE TO SHARE THEIR 602 00:20:04,880 --> 00:20:06,160 BACKGROUNDS AND WHY AGAIN WE'RE 603 00:20:06,160 --> 00:20:08,040 MAKING THIS INVESTMENT IN THE 604 00:20:08,040 --> 00:20:09,840 PROJECT. 605 00:20:09,840 --> 00:20:12,520 SO DR. PATNAIK IS A SENIOR 606 00:20:12,520 --> 00:20:13,160 RESEARCHER AT MATHEMATICA AND 607 00:20:13,160 --> 00:20:16,600 THE DEPUTY PROJECT DIRECTOR FOR 608 00:20:16,600 --> 00:20:17,120 THE PROJECT. 609 00:20:17,120 --> 00:20:21,240 SHE HAS A PH.D. IN ECONOMICS 610 00:20:21,240 --> 00:20:23,120 FROM CORNELL UNIVERSITY AND A 611 00:20:23,120 --> 00:20:25,240 MASTER'S DEGREE IN ECONOMICS 612 00:20:25,240 --> 00:20:26,520 FROM UNIVERSITY OF EDINBURGH, 613 00:20:26,520 --> 00:20:28,360 AND SHE HAS SERVED AS THE IMPACT 614 00:20:28,360 --> 00:20:30,680 STUDY LEAD FOR THE EVALUATION OF 615 00:20:30,680 --> 00:20:32,520 ODEP'S RETAINING EMPLOYMENT AND 616 00:20:32,520 --> 00:20:36,600 TALENT AFTER INJURY/ILLNESS 617 00:20:36,600 --> 00:20:39,000 NETWORK, OUR RETAIN PROJECT. 618 00:20:39,000 --> 00:20:41,000 AMONG OTHER ROLES SHE HAS ALSO 619 00:20:41,000 --> 00:20:41,720 SERVED AS EVALUATION LEAD FOR 620 00:20:41,720 --> 00:20:43,040 THE INTERAGENCY PROMOTING 621 00:20:43,040 --> 00:20:44,360 READINESS OF MINORS IN 622 00:20:44,360 --> 00:20:47,320 SUPPLEMENTAL SECURITY INCOME 623 00:20:47,320 --> 00:20:49,400 EVALUATION, OR PROMISE PROJECT, 624 00:20:49,400 --> 00:20:50,680 AND D.O.L. IS ONE OF THE 625 00:20:50,680 --> 00:20:51,480 DEPARTMENTS THAT HAS BEEN A 626 00:20:51,480 --> 00:20:54,080 PARTNER ON THAT PROMISE PROJECT. 627 00:20:54,080 --> 00:20:56,520 AND DR. SHATTUCK IS A SENIOR 628 00:20:56,520 --> 00:20:59,040 FELLOW AT MATHEMATICA AND AN 629 00:20:59,040 --> 00:21:00,560 EXPERT ON AUTISM IN ADULTHOOD 630 00:21:00,560 --> 00:21:02,440 INCLUDING OUTCOME MEASURES AND 631 00:21:02,440 --> 00:21:03,120 SUPPORTS AND SERVICES FOR 632 00:21:03,120 --> 00:21:04,000 EMPLOYMENT AND COMMUNITY LIVING. 633 00:21:04,000 --> 00:21:07,520 HE HAS A PH.D. IN SOCIAL WELFARE 634 00:21:07,520 --> 00:21:07,920 FROM UNIVERSITY OF 635 00:21:07,920 --> 00:21:09,400 WISCONSIN-MADISON AND HIS 636 00:21:09,400 --> 00:21:11,480 RESEARCH FOCUSES ON MEASURING 637 00:21:11,480 --> 00:21:12,440 AND IMPROVING THE PERFORMANCE 638 00:21:12,440 --> 00:21:13,760 AND A EQUITY OF SYSTEMS OF CARE 639 00:21:13,760 --> 00:21:14,760 FOR VULNERABLE POPULATIONS. 640 00:21:14,760 --> 00:21:16,720 SE A MEMBER OF PLAT MATT KA'S 641 00:21:16,720 --> 00:21:18,680 EQUITY COMMITTEE OF PRACTICE AND 642 00:21:18,680 --> 00:21:20,280 ALSO THE FORMER FOUNDING LEADER 643 00:21:20,280 --> 00:21:22,280 AS WAS MENTIONED EARLIER OF THE 644 00:21:22,280 --> 00:21:26,080 A.J. DREXEL AUTISM INSTITUTE OUT 645 00:21:26,080 --> 00:21:27,240 COME PROGRAM, THE NATIONAL DATA 646 00:21:27,240 --> 00:21:28,920 CENTER AND TRANSITION PATHWAYS 647 00:21:28,920 --> 00:21:30,080 COMMUNITY PARTNERSHIP 648 00:21:30,080 --> 00:21:32,560 INITIATIVE. 649 00:21:32,560 --> 00:21:37,400 AND THEIR PROJECT ON -- THE RAES 650 00:21:37,400 --> 00:21:39,760 PROJECT THAT THEY'LL BE FOCUSING 651 00:21:39,760 --> 00:21:41,160 ON IN THEIR PRESENTATION IN A 652 00:21:41,160 --> 00:21:42,960 SECOND IS A CONTRACT FROM ODEP 653 00:21:42,960 --> 00:21:44,400 TO MATHEMATICA, WHICH WAS 654 00:21:44,400 --> 00:21:49,280 LAUNCHED IN FY 2021 AS A 655 00:21:49,280 --> 00:21:51,320 COLLABORATION BETWEEN ODEP AND 656 00:21:51,320 --> 00:21:52,200 MATHEMATICA AND A HISTORIC 657 00:21:52,200 --> 00:21:54,280 INVESTMENT FOR US AS AN AGENCY 658 00:21:54,280 --> 00:21:56,040 AT THE REQUEST OF CONGRESS AS 659 00:21:56,040 --> 00:21:58,240 INDICATED BY PRIOR PRIORITIES IN 660 00:21:58,240 --> 00:22:01,960 APPROPRIATIONS LANGUAGE. 661 00:22:01,960 --> 00:22:03,280 THIS HISTORIC THREE-YEAR PROJECT 662 00:22:03,280 --> 00:22:04,760 REFLECTS A PIONEERING INVESTMENT 663 00:22:04,760 --> 00:22:06,840 BY ODEP TO EXPAND OUR KNOWLEDGE 664 00:22:06,840 --> 00:22:08,520 ABOUT IMPROVING ACCESS TO 665 00:22:08,520 --> 00:22:10,440 EMPLOYMENT OPPORTUNITIES FOR 666 00:22:10,440 --> 00:22:12,120 DIVERSE AUTISTIC YOUTH AND YOUNG 667 00:22:12,120 --> 00:22:12,920 ADULTS. 668 00:22:12,920 --> 00:22:14,280 IT REPRESENTS ONE OF OUR LARGEST 669 00:22:14,280 --> 00:22:16,800 PROJECTS EVER FOR THE FOCUS ON 670 00:22:16,800 --> 00:22:17,560 SUPPORTING NEURODIVERSITY AT 671 00:22:17,560 --> 00:22:19,560 WORK IN THE 21-YEAR HISTORY OF 672 00:22:19,560 --> 00:22:21,080 THE AGENCY. 673 00:22:21,080 --> 00:22:23,320 ITS FINDINGS OFFER A CRUCIAL 674 00:22:23,320 --> 00:22:24,320 OPPORTUNITY TO GAIN KNOWLEDGE 675 00:22:24,320 --> 00:22:25,720 THAT CAN HELP SHAPE OUR WORK TO 676 00:22:25,720 --> 00:22:26,760 ADVANCE POLICIES AND PRACTICES 677 00:22:26,760 --> 00:22:29,480 IN THIS SPACE TO EXPLAIN 678 00:22:29,480 --> 00:22:31,680 EMPLOYMENT ACCESS FOR ALL 679 00:22:31,680 --> 00:22:34,600 AUTISTIC YOUTH AND YOUNG ADULTS. 680 00:22:34,600 --> 00:22:38,680 FOSTERING THE RAES PROJECT AT 681 00:22:38,680 --> 00:22:40,320 ODEP HAS -- BARRIERS, APPROACHES 682 00:22:40,320 --> 00:22:41,560 AND STRATEGIES FOR EMPLOYMENT 683 00:22:41,560 --> 00:22:43,200 SUCCESS AND CAREER PATHWAYS. 684 00:22:43,200 --> 00:22:45,360 WE HAVE PRIORITIZED LEARNING 685 00:22:45,360 --> 00:22:49,440 ABOUT KEY GAPS AND DISPARITIES 686 00:22:49,440 --> 00:22:51,520 ABOUT YOUTH AND YOUNG ADULTS ON 687 00:22:51,520 --> 00:22:59,320 THE AUTISM SPECTRUM WHO CAN 688 00:22:59,320 --> 00:23:02,520 REFLECT ASPECTS OF DIVERSITY, 689 00:23:02,520 --> 00:23:04,960 EQUITY, ACCESS INCLUDING ANY USE 690 00:23:04,960 --> 00:23:07,200 OF AUGMENTIVE AND ALTERNATIVE 691 00:23:07,200 --> 00:23:08,960 COMMUNICATION OR AAC SYSTEMS AND 692 00:23:08,960 --> 00:23:11,280 DEVICES AND DIVERSITY OF ACCESS 693 00:23:11,280 --> 00:23:14,120 AND SUPPORT NEEDS INCLUDING FOR 694 00:23:14,120 --> 00:23:15,000 BOTH EMPLOYMENT SUPPORTS AND 695 00:23:15,000 --> 00:23:16,440 COMMUNITY AND INDEPENDENT LIVING 696 00:23:16,440 --> 00:23:19,520 THAT MAY VARY WIDELY FROM 697 00:23:19,520 --> 00:23:21,040 EXTENSIVE TO LESS EXTENSIVE AND 698 00:23:21,040 --> 00:23:24,000 MORE MODERATE SUPPORT FOR 699 00:23:24,000 --> 00:23:24,720 SUCCESS IN EMPLOYMENT 700 00:23:24,720 --> 00:23:25,480 OPPORTUNITIES AND COMMUNITY 701 00:23:25,480 --> 00:23:26,120 LIVING. 702 00:23:26,120 --> 00:23:29,480 AND CRUCIALLY, THESE PRIORITIES 703 00:23:29,480 --> 00:23:31,040 FOR THE INVESTMENT IN THE 704 00:23:31,040 --> 00:23:32,400 PROJECT ALL ALIGN WITH OUR 705 00:23:32,400 --> 00:23:34,600 ONGOING WORK AT ODEP FOR 706 00:23:34,600 --> 00:23:35,680 DIVERSITY, EQUITY AND INCLUSION 707 00:23:35,680 --> 00:23:38,200 AND ACCESSIBILITY OR DEIA AT 708 00:23:38,200 --> 00:23:38,880 WORK. 709 00:23:38,880 --> 00:23:40,360 I WOULD NOW LIKE TO TURN THE 710 00:23:40,360 --> 00:23:42,240 MICROPHONE OVER TO MY ESTEEMED 711 00:23:42,240 --> 00:23:43,120 COLLEAGUES AT MATHEMATICA SO 712 00:23:43,120 --> 00:23:46,080 THEY CAN SHARE MORE ABOUT THE 713 00:23:46,080 --> 00:23:48,480 RESEARCH ON AUTISM INCLUDING THE 714 00:23:48,480 --> 00:23:48,800 RAES PROJECT. 715 00:23:48,800 --> 00:23:59,000 THANK YOU. 716 00:23:59,960 --> 00:24:02,240 >>THANK YOU SO MUCH FOR THAT 717 00:24:02,240 --> 00:24:02,920 KIND INTRODUCTION. 718 00:24:02,920 --> 00:24:04,080 AND IT IS A THRILL TO BE HERE. 719 00:24:04,080 --> 00:24:06,000 I'VE GOT TO TELL YOU, I'M 720 00:24:06,000 --> 00:24:08,600 LOOKING AT THE ROSTER OF 721 00:24:08,600 --> 00:24:10,280 PARTICIPANTS, IT'S LIKE A WHO'S 722 00:24:10,280 --> 00:24:13,800 WHO OF PEOPLE WHO ARE DEDICATED 723 00:24:13,800 --> 00:24:19,240 AND DEDICATED TO MAKING A 724 00:24:19,240 --> 00:24:20,480 DIFFERENCE IN THE WORLD AND 725 00:24:20,480 --> 00:24:21,480 DEDICATED TO MAKES A DIFFERENCE 726 00:24:21,480 --> 00:24:22,880 IN THE LIECHES OF AUTISTIC 727 00:24:22,880 --> 00:24:24,320 PEOPLE AND THEIR COMMUNITIES. 728 00:24:24,320 --> 00:24:28,000 I'M THRILLED TO BE HER HERE, ITN 729 00:24:28,000 --> 00:24:29,880 HONOR, I'VE PRESENTED TO THIS 730 00:24:29,880 --> 00:24:30,320 BODY BEFORE. 731 00:24:30,320 --> 00:24:32,040 I WANT TO DO A QUICK SPECIAL 732 00:24:32,040 --> 00:24:36,160 SHOUT OUT, I SEE ON THE ROSTER 733 00:24:36,160 --> 00:24:38,840 MARCIA MALIK AND OTHERS WHERE I 734 00:24:38,840 --> 00:24:41,240 REALLY GOT MY START AND TRAINING 735 00:24:41,240 --> 00:24:43,960 20-PLUS YEARS AGO AND MARCIA'S 736 00:24:43,960 --> 00:24:46,080 MENTORSHIP AND THE MENTORSHIP I 737 00:24:46,080 --> 00:24:47,480 GOT FROM THE NETWORK REALLY 738 00:24:47,480 --> 00:24:48,760 PREPARED ME FOR A LIFETIME OF 739 00:24:48,760 --> 00:24:53,280 SERVICE IN THIS ARENA. 740 00:24:53,280 --> 00:24:54,960 I'M SO GRATEFUL TO BE HERE AND 741 00:24:54,960 --> 00:24:57,360 SHARING OUR WORK WITH YOU ALL. 742 00:24:57,360 --> 00:24:58,840 SO TODAY WE'RE GOING TO TALK A 743 00:24:58,840 --> 00:25:00,360 LITTLE BIT ABOUT WHO'S 744 00:25:00,360 --> 00:25:01,240 MATHEMATICA AND I'LL TELL YOU A 745 00:25:01,240 --> 00:25:07,600 LITTLE ABOUT OUR BACKGROUND AS A 746 00:25:07,600 --> 00:25:10,880 COMPANY, WHY I LEFT ACADEMIA TO 747 00:25:10,880 --> 00:25:15,080 JOIN MATHEMATICA, HOW WE 748 00:25:15,080 --> 00:25:16,280 CROSSWALK SOME OF OUR WORK TO 749 00:25:16,280 --> 00:25:17,680 THE STRATEGIC GOALS OF IACC. 750 00:25:17,680 --> 00:25:20,000 THEN I'M GOING TO HAND IT OVER 751 00:25:20,000 --> 00:25:21,760 TO MY COLLEAGUE WHO'S GOING TO 752 00:25:21,760 --> 00:25:23,720 DO A SPOTLIGHT PRESENTATION ON 753 00:25:23,720 --> 00:25:25,320 OUR ODEP FUNDED PROJECT AND THEN 754 00:25:25,320 --> 00:25:26,880 WE'LL WRAP UP WITH A QUICK LOOK 755 00:25:26,880 --> 00:25:29,880 AHEAD ABOUT WHERE WE'RE GOING 756 00:25:29,880 --> 00:25:31,360 NEXT, AND ANSWER QUESTIONS, 757 00:25:31,360 --> 00:25:32,600 BECAUSE I'M EAGER TO HEAR FROM 758 00:25:32,600 --> 00:25:33,200 YOU ALL. 759 00:25:33,200 --> 00:25:36,600 SO LET'S ROLL. 760 00:25:36,600 --> 00:25:37,600 I'M NOT GOING TO READ THIS 761 00:25:37,600 --> 00:25:39,560 SLIDE, BUT I'LL JUST -- I'LL 762 00:25:39,560 --> 00:25:41,200 HIGHLIGHT SOME OF THE TAKEAWAYS. 763 00:25:41,200 --> 00:25:42,640 SO I LEFT ACADEMIA A COUPLE 764 00:25:42,640 --> 00:25:45,480 YEARS AGO TO JOIN MATHEMATICA, 765 00:25:45,480 --> 00:25:48,560 WHICH IS A POLICY RESEARCH 766 00:25:48,560 --> 00:25:49,200 COMPANY. 767 00:25:49,200 --> 00:25:51,040 SORRY, DR. GORDON, THERE IS 768 00:25:51,040 --> 00:25:52,880 ANOTHER COMPANY CALLED 769 00:25:52,880 --> 00:25:55,760 MATHEMATICA THAT DOES 770 00:25:55,760 --> 00:25:56,400 MATHEMATICAL SOFTWARE MODELING 771 00:25:56,400 --> 00:25:57,280 BUT THAT'S A DIFFERENT COMPANY. 772 00:25:57,280 --> 00:26:00,680 WE'RE A POLICY RESEARCH COMPANY. 773 00:26:00,680 --> 00:26:00,960 >>SORRY! 774 00:26:00,960 --> 00:26:03,600 >>IT'S OKAY, IT'S A COMMON 775 00:26:03,600 --> 00:26:04,280 MIXUP. 776 00:26:04,280 --> 00:26:06,080 AND WE ARE AN EMPLOYEE-OWNED 777 00:26:06,080 --> 00:26:06,560 COMPANY. 778 00:26:06,560 --> 00:26:09,000 AND SO IT'S A REALLY PASSIONATE 779 00:26:09,000 --> 00:26:10,800 COMMUNITY, VERY DEDICATED 780 00:26:10,800 --> 00:26:12,800 SCIENTISTS WHO BELIEVE IN 781 00:26:12,800 --> 00:26:14,800 BUILDING EVIDENCE TO INFORM 782 00:26:14,800 --> 00:26:15,760 PUBLIC POLICY. 783 00:26:15,760 --> 00:26:17,360 SO THAT PUBLIC POLICY IS IN 784 00:26:17,360 --> 00:26:19,800 AREAS OF EDUCATION, HUMAN 785 00:26:19,800 --> 00:26:21,600 SERVICES, PUBLIC HEALTH, ARE 786 00:26:21,600 --> 00:26:22,760 GROUNDED IN THE BEST AVAILABLE 787 00:26:22,760 --> 00:26:23,400 EVIDENCE. 788 00:26:23,400 --> 00:26:25,400 AND IT'S AN EXCITING TEAM AND 789 00:26:25,400 --> 00:26:27,520 IT'S A REALLY EXCITING PLACE TO 790 00:26:27,520 --> 00:26:27,960 WORK. 791 00:26:27,960 --> 00:26:29,920 I DECIDED TO MAKE THE SWITCH OUT 792 00:26:29,920 --> 00:26:32,720 OF ACADEMIA BECAUSE I REALLY 793 00:26:32,720 --> 00:26:35,560 WANTED TO DIRECT MY CAREER IN A 794 00:26:35,560 --> 00:26:37,480 WAY THAT WOULD BE EMPHASIZING 795 00:26:37,480 --> 00:26:41,160 MUCH LARGER SCALE PROGRAMMATIC 796 00:26:41,160 --> 00:26:43,280 IMPACT, AND SO MATHEMATICA AS A 797 00:26:43,280 --> 00:26:45,960 COMPANY IS OFTEN THE GO-TO 798 00:26:45,960 --> 00:26:46,800 CONTRACTOR OF CHOICE FOR 799 00:26:46,800 --> 00:26:48,800 GOVERNMENT AGENCIES THAT WANT TO 800 00:26:48,800 --> 00:26:51,760 DO EXTREMELY LARGE SCALE 801 00:26:51,760 --> 00:26:52,920 NATIONAL EVALUATION STUDIES OF 802 00:26:52,920 --> 00:26:54,960 BIG NATIONAL PROGRAMS, 803 00:26:54,960 --> 00:26:56,320 ESTABLISHING NATIONAL RESEARCH 804 00:26:56,320 --> 00:26:57,880 PRIORITIES IN ESSENTIAL AREAS. 805 00:26:57,880 --> 00:27:03,320 WE HAVE A LOT OF WORK IN OUR 806 00:27:03,320 --> 00:27:05,000 PORTFOLIO DURING THE PUBLIC 807 00:27:05,000 --> 00:27:06,960 HEALTH EMERGENCY RELATED TO 808 00:27:06,960 --> 00:27:08,560 CONTACT TRACING AND LEADING EDGE 809 00:27:08,560 --> 00:27:10,120 WORK ON COVID AND HOW IT WAS 810 00:27:10,120 --> 00:27:12,200 MAKING ITS WAY THROUGH 811 00:27:12,200 --> 00:27:13,840 VULNERABLE SAFETY NET 812 00:27:13,840 --> 00:27:14,400 POPULATIONS. 813 00:27:14,400 --> 00:27:15,600 IT'S A REALLY EXCITING PLACE TO 814 00:27:15,600 --> 00:27:17,160 WORK AND WE'RE ALL ABOUT MAKING 815 00:27:17,160 --> 00:27:19,400 AN IMPACT ON PUBLIC POLICY, AND 816 00:27:19,400 --> 00:27:21,160 IMPROVING THE LIVES OF CITIZENS 817 00:27:21,160 --> 00:27:25,480 THROUGH RIGOROUS RESEARCH. 818 00:27:25,480 --> 00:27:28,240 AND WE HAVE -- WE'RE PART OF AN 819 00:27:28,240 --> 00:27:29,120 ECOSYSTEM OF PRIVATE COMPANIES 820 00:27:29,120 --> 00:27:30,320 THAT DO THIS KIND OF RESEARCH, 821 00:27:30,320 --> 00:27:33,200 AND I THINK OUR EMPLOYEE 822 00:27:33,200 --> 00:27:35,000 OWNERSHIP IS A SIGNATURE FEATURE 823 00:27:35,000 --> 00:27:36,440 THAT DISTINGUISHES US, AND 824 00:27:36,440 --> 00:27:37,640 ANOTHER DISTINGUISHING FEATURE 825 00:27:37,640 --> 00:27:40,160 THAT ATTRACTED ME TO MATHEMATICA 826 00:27:40,160 --> 00:27:42,480 IS THAT FOR MANY YEARS, IT HAS 827 00:27:42,480 --> 00:27:43,760 HAD A DISABILITY UNIT. 828 00:27:43,760 --> 00:27:48,640 SO WE HAVE A COUPLE DOZEN OR 829 00:27:48,640 --> 00:27:51,720 MORE RESEARCH SCIENTISTS THAT 830 00:27:51,720 --> 00:27:52,920 FOCUS EXCLUSIVELY ON DISABILITY 831 00:27:52,920 --> 00:27:53,720 RESEARCH AND DISABILITY POLICY 832 00:27:53,720 --> 00:27:55,840 AND WORK THAT INFORMS NEW 833 00:27:55,840 --> 00:27:58,120 DISABILITY POLICIES AS WELL AS 834 00:27:58,120 --> 00:27:59,720 EVALUATES LARGE SCALE NATIONAL 835 00:27:59,720 --> 00:28:00,240 PROGRAMS. 836 00:28:00,240 --> 00:28:02,160 WE DO A LOT OF WORK WITH THE 837 00:28:02,160 --> 00:28:02,840 SOCIAL SECURITY ADMINISTRATION, 838 00:28:02,840 --> 00:28:04,880 WITH NIDILRR, AND OTHER AGENCIES 839 00:28:04,880 --> 00:28:08,440 THAT FOCUS ON DISABILITY. 840 00:28:08,440 --> 00:28:09,680 SO IT'S AN OPPORTUNITY TO KIND 841 00:28:09,680 --> 00:28:12,160 OF JOIN A DREAM TEAM FULL OF 842 00:28:12,160 --> 00:28:13,520 SMART PEOPLE WHO ARE PASSIONATE 843 00:28:13,520 --> 00:28:15,280 ABOUT IMPROVING PUBLIC SERVICES 844 00:28:15,280 --> 00:28:16,400 AND PUBLIC PROGRAMS FOR PEOPLE 845 00:28:16,400 --> 00:28:18,720 WITH DISABILITIES, A CHANCE THAT 846 00:28:18,720 --> 00:28:22,720 I JUMPED AT. 847 00:28:22,720 --> 00:28:24,560 SO I'M GOING TO CONNECT, AS YOU 848 00:28:24,560 --> 00:28:27,680 ALL KNOW, BECAUSE YOU CREATED 849 00:28:27,680 --> 00:28:30,040 THE STRATEGIC PLAN, THE 850 00:28:30,040 --> 00:28:35,400 STRATEGIC PLAN IS DIVIDED INTO 851 00:28:35,400 --> 00:28:37,040 THESE DIFFERENT FOCAL AREAS 852 00:28:37,040 --> 00:28:37,800 ORGANIZED BY QUESTIONS. 853 00:28:37,800 --> 00:28:39,880 SO A LOT OF OUR WORK SORT OF 854 00:28:39,880 --> 00:28:42,600 CLUSTERS UNDER QUESTION 6, WHICH 855 00:28:42,600 --> 00:28:43,840 IS, HOW CAN WE MEET THE NEEDS OF 856 00:28:43,840 --> 00:28:46,720 PEOPLE WITH ASD AS THEY PROGRESS 857 00:28:46,720 --> 00:28:48,400 INTO AND THROUGH ADULTHOOD. 858 00:28:48,400 --> 00:28:50,560 AND THEN WE ALSO -- MUCH OF OUR 859 00:28:50,560 --> 00:28:52,520 WORK CAN ALSO BE CLUSTERED UNDER 860 00:28:52,520 --> 00:28:53,920 QUESTION 5, WHICH IS WHAT KINDS 861 00:28:53,920 --> 00:28:56,280 OF SERVICES AND SUPPORTS ARE 862 00:28:56,280 --> 00:28:57,720 MAXIMIZE QUALITY OF LIFE FOR 863 00:28:57,720 --> 00:28:58,800 PEOPLE ON THE AUTISM SPECTRUM. 864 00:28:58,800 --> 00:29:01,280 SO SOME OF OUR RECENT AUTISM 865 00:29:01,280 --> 00:29:02,640 RESEARCH, WE HAVE A COUPLE OTHER 866 00:29:02,640 --> 00:29:03,960 PROJECTS BUT THESE ARE THE BIG 867 00:29:03,960 --> 00:29:04,960 FLAGSHIP ONES THAT ARE IN PLAY 868 00:29:04,960 --> 00:29:06,720 RIGHT NOW. 869 00:29:06,720 --> 00:29:08,880 THE REYAAS PROJECT FUNDED BY 870 00:29:08,880 --> 00:29:13,320 OPEN DEP WHICH WBYODEP. 871 00:29:13,320 --> 00:29:17,640 THE READINESS OF MINORS WITH 872 00:29:17,640 --> 00:29:18,920 AUTISM SPECTRUM DISORDER IS 873 00:29:18,920 --> 00:29:20,320 SOMETHING I'LL BRIEFLY GO OVER. 874 00:29:20,320 --> 00:29:22,400 IT'S A SOCIAL SECURITY 875 00:29:22,400 --> 00:29:23,000 ADMINISTRATION-FUNDED PROJECT 876 00:29:23,000 --> 00:29:24,760 THAT WAS PRETTY EXCITING. 877 00:29:24,760 --> 00:29:25,840 OUR NEXT GEN PROJECT WHICH IS 878 00:29:25,840 --> 00:29:27,360 FOCUSED ON ENHANCED EMPLOYMENT 879 00:29:27,360 --> 00:29:28,760 STRATEGIES IS IN PLAY RIGHT NOW. 880 00:29:28,760 --> 00:29:30,200 AND WE HAVE SEVERAL SITES AROUND 881 00:29:30,200 --> 00:29:30,800 THE COUNTRY. 882 00:29:30,800 --> 00:29:32,800 IT'S A LARGE SCALE DEMONSTRATION 883 00:29:32,800 --> 00:29:35,440 AND EVALUATION RESEARCH PROJECT 884 00:29:35,440 --> 00:29:37,120 THAT INCLUDED A SITE THAT'S 885 00:29:37,120 --> 00:29:41,000 FOCUSED ON AUTISM. 886 00:29:41,000 --> 00:29:43,320 THEN OUR HRSA AUTISM TRANSITIONS 887 00:29:43,320 --> 00:29:44,640 RESEARCH PROJECT WHICH WE JUST 888 00:29:44,640 --> 00:29:46,680 GOT RE-FUNDED FOR ANOTHER 889 00:29:46,680 --> 00:29:47,480 FIVE-YEAR CYCLE. 890 00:29:47,480 --> 00:29:48,760 THAT WAS A PROJECT I WAS P.I. ON 891 00:29:48,760 --> 00:29:53,520 WHEN I WAS AT DREXEL, AND I 892 00:29:53,520 --> 00:29:55,040 REMAIN IN CLOSE CONTACT AND WORK 893 00:29:55,040 --> 00:29:56,960 UNDER A SUBCONTRACT WITH MY 894 00:29:56,960 --> 00:29:58,760 FORMER COLLEAGUES AT DREXEL AND 895 00:29:58,760 --> 00:30:02,680 WE SUBMITTED A RENEWAL RECOMPETE 896 00:30:02,680 --> 00:30:04,320 WHICH I'M THRILLED TO SAY GOT A 897 00:30:04,320 --> 00:30:07,200 PERFECT SCORE, SO WE GOT 898 00:30:07,200 --> 00:30:08,000 REFUNDED FOR ANOTHER FIVE YEARS 899 00:30:08,000 --> 00:30:09,920 OF HRSA WORK FOCUSED ON AUTISM 900 00:30:09,920 --> 00:30:10,520 TRANSITION. 901 00:30:10,520 --> 00:30:17,360 I'LL TALK VERY BRIEFLY ABOUT 902 00:30:17,360 --> 00:30:17,800 THAT. 903 00:30:17,800 --> 00:30:19,560 SO THE PROMISE EVALUATION WAS A 904 00:30:19,560 --> 00:30:20,640 REALLY EXCITING OPPORTUNITY THAT 905 00:30:20,640 --> 00:30:23,160 WAS MADE POSSIBLE BY A CONTRACT 906 00:30:23,160 --> 00:30:24,520 WITH AUTISM SPEAKS. 907 00:30:24,520 --> 00:30:29,720 WE HAD A LARGE -- A VERY LARGE 908 00:30:29,720 --> 00:30:32,160 SCALE STUDY FUNDED ORIGINALLY BY 909 00:30:32,160 --> 00:30:32,600 THE SOCIAL SECURITY 910 00:30:32,600 --> 00:30:37,400 ADMINISTRATION TO EVALUATE THIS 911 00:30:37,400 --> 00:30:38,600 SSA INITIATIVE CALLED THE 912 00:30:38,600 --> 00:30:39,720 PROMISE INITIATIVE, AND IT JUST 913 00:30:39,720 --> 00:30:41,160 HAPPENED TO INCLUDE A BUNCH OF 914 00:30:41,160 --> 00:30:43,040 PEOPLE, A BUNCH OF AUTISTIC 915 00:30:43,040 --> 00:30:44,800 PEOPLE IN THE DATA, BUT THE SSA 916 00:30:44,800 --> 00:30:50,600 CONTRACT DID NOT PAY US TO DRILL 917 00:30:50,600 --> 00:30:52,880 DOWN AND EX-AP INTHE UNIQUE 918 00:30:52,880 --> 00:30:54,080 EXPERIENCE OF PEOPLE ON THE 919 00:30:54,080 --> 00:30:55,240 AUTISM SPECTRUM WILL, BUT WE HAD 920 00:30:55,240 --> 00:30:57,240 THE DATA, SO AUTISM SPEAKS, IN 921 00:30:57,240 --> 00:31:00,520 THEIR WISDOM, WAS WILLING TO 922 00:31:00,520 --> 00:31:02,560 INVEST IN THE TIME IT WOULD TAKE 923 00:31:02,560 --> 00:31:03,560 TO DO THE ANALYSES AND WRITE UP 924 00:31:03,560 --> 00:31:04,800 A REPORT, WHICH IS AVAILABLE ON 925 00:31:04,800 --> 00:31:05,360 OUR WEBSITE. 926 00:31:05,360 --> 00:31:07,400 AND IN THIS DEMONSTRATION 927 00:31:07,400 --> 00:31:08,360 PROJECT, TRANSITION SERVICES 928 00:31:08,360 --> 00:31:10,080 WERE PROVIDED TO OVER 12,000 929 00:31:10,080 --> 00:31:11,280 ADOLESCENTS WITH DISABILITIES 930 00:31:11,280 --> 00:31:14,080 WHO WERE RECEIVING SSI 931 00:31:14,080 --> 00:31:15,720 SUPPLEMENTAL SECURITY INCOME. 932 00:31:15,720 --> 00:31:20,920 AND ABOUT 13% OF THAT NUMBER 933 00:31:20,920 --> 00:31:22,760 WERE AUTISTIC, AND SO WE DRILLED 934 00:31:22,760 --> 00:31:24,760 INTO THE DATA TO LOOK AT THE 935 00:31:24,760 --> 00:31:25,640 UNIQUE EXPERIENCE OF THAT SUBSET 936 00:31:25,640 --> 00:31:27,920 OF PEOPLE. 937 00:31:27,920 --> 00:31:30,320 WHAT WE FOUND WAS THAT THE 938 00:31:30,320 --> 00:31:35,520 PROMISE PARTICIPATION -- 939 00:31:35,520 --> 00:31:37,440 PARTICIPATION IN THE PROMISE 940 00:31:37,440 --> 00:31:41,520 PROGRAM -- SORRY IT'S A TONGUE 941 00:31:41,520 --> 00:31:43,280 TWISTER, TRIPLE P, NEARLY 942 00:31:43,280 --> 00:31:45,320 DOUBLED SHAIRT OF AUTISTIC JOB 943 00:31:45,320 --> 00:31:47,800 WHO HELD PAID JOBS IN THE 18 944 00:31:47,800 --> 00:31:48,840 MONTHS AFTER THE INTERVENTION. 945 00:31:48,840 --> 00:31:50,240 AND WE'RE IN THE MIDST OF A 946 00:31:50,240 --> 00:31:51,680 FIVE-YEAR IMPACT FOLLOW-UP 947 00:31:51,680 --> 00:31:54,320 STUDY, SO WE'RE EXCITED TO SEE 948 00:31:54,320 --> 00:31:56,080 IF THOSE EFFECTS HOLDOVER TIME, 949 00:31:56,080 --> 00:31:59,040 BECAUSE WE KNOW RIGHT HERE IN 950 00:31:59,040 --> 00:32:01,280 THIS ROOM, WE KNOW THAT THE 951 00:32:01,280 --> 00:32:02,920 CHALLENGE IS -- THERE ARE TWO 952 00:32:02,920 --> 00:32:03,840 REALLY QUITE DISTINCT 953 00:32:03,840 --> 00:32:04,240 CHALLENGES. 954 00:32:04,240 --> 00:32:06,760 GETTING A JOB AND KEEPING A JOB 955 00:32:06,760 --> 00:32:11,160 ARE TWO DIFFERENT THINGS. 956 00:32:11,160 --> 00:32:12,400 MANY AUTISTIC PEOPLE STRUGGLE 957 00:32:12,400 --> 00:32:14,880 WITH BOTH. 958 00:32:14,880 --> 00:32:16,360 SO ANY LINE OF WORK ON 959 00:32:16,360 --> 00:32:17,520 EMPLOYMENT IN AUTISM REALLY 960 00:32:17,520 --> 00:32:22,440 NEEDS TO BE LONGITUDINAL IN ITS 961 00:32:22,440 --> 00:32:23,840 DESIGN, AND I'M SO GRATEFUL 962 00:32:23,840 --> 00:32:25,360 AGAIN TO MARCIA AND MY 963 00:32:25,360 --> 00:32:26,400 COLLEAGUES IN THE NETWORK WHO 964 00:32:26,400 --> 00:32:27,760 HAVE SCHOOLED ME ON THE 965 00:32:27,760 --> 00:32:28,960 IMPORTANCE OF LONGITUDINAL 966 00:32:28,960 --> 00:32:33,120 COHORT RESEARCH METHODS BECAUSE 967 00:32:33,120 --> 00:32:36,400 AUTISM IS A JOURNEY, IT'S NOT 968 00:32:36,400 --> 00:32:39,720 A -- PEOPLE ON THE AUTISM 969 00:32:39,720 --> 00:32:41,520 SPECTRUM LIKE EVERYONE ELSE 970 00:32:41,520 --> 00:32:43,360 GROW, DEVELOP, CHANGE, EVOLVE 971 00:32:43,360 --> 00:32:44,280 THROUGH THEIR LIFE COURSES. 972 00:32:44,280 --> 00:32:45,560 SO RESEARCH ON THINGS LIKE 973 00:32:45,560 --> 00:32:48,080 EMPLOYMENT REALLY NEED TO BE 974 00:32:48,080 --> 00:32:49,040 LONGITUDINAL IN NATURE IN ORDER 975 00:32:49,040 --> 00:32:52,920 TO CAPTURE THE UNFOLDING 976 00:32:52,920 --> 00:32:54,000 TRAJECTORY AND JOURNEY OF HOW 977 00:32:54,000 --> 00:33:01,400 THESE THINGS PLAY OUT OVER TIME. 978 00:33:01,400 --> 00:33:02,200 SO OUR NEXT GEN PROJECT IS 979 00:33:02,200 --> 00:33:03,680 FUNDED BY THE ADMINISTRATION FOR 980 00:33:03,680 --> 00:33:09,760 CHILDREN AND FAMILIES, AND IT'S 981 00:33:09,760 --> 00:33:11,720 KIND OF A -- IT'S A TOUGH ONE TO 982 00:33:11,720 --> 00:33:14,080 CHARACTERIZE BECAUSE THE NEXT -- 983 00:33:14,080 --> 00:33:15,960 BY DESIGN, THE NEXT GEN 984 00:33:15,960 --> 00:33:17,520 INITIATIVE MANIFESTS SOMEWHAT 985 00:33:17,520 --> 00:33:19,400 THE MODEL BENEFITS A LITTLE 986 00:33:19,400 --> 00:33:23,320 DIFFERENTLY SITE BY SITE. 987 00:33:23,320 --> 00:33:25,000 BUT FOR EXAMPLE, WE HAVE A 988 00:33:25,000 --> 00:33:26,120 BRIDGES FROM SCHOOL TO WORK 989 00:33:26,120 --> 00:33:28,920 PROGRAM THAT PROVIDES INTENSIVE 990 00:33:28,920 --> 00:33:29,560 EMPLOYMENT-RELATED SUPPORTS TO 991 00:33:29,560 --> 00:33:31,040 STUDENTS WHO ARE IN HIGH SCHOOL, 992 00:33:31,040 --> 00:33:34,160 SPECIAL ED, BOTH INTELLECTUAL 993 00:33:34,160 --> 00:33:34,800 AND DEVELOPMENTAL DISABILITIES, 994 00:33:34,800 --> 00:33:36,680 AND IT CREATES THESE SUPPORTIVE 995 00:33:36,680 --> 00:33:37,840 SERVICES AS YOUTH ARE 996 00:33:37,840 --> 00:33:39,360 TRANSITIONING OUT OF HIGH 997 00:33:39,360 --> 00:33:39,600 SCHOOL. 998 00:33:39,600 --> 00:33:43,560 AND SO WE DO HAVE ONE SITE 999 00:33:43,560 --> 00:33:45,040 THAT'S BASED IN PHILADELPHIA 1000 00:33:45,040 --> 00:33:46,480 THAT INCLUDES A LARGE CONTINGENT 1001 00:33:46,480 --> 00:33:49,680 OF AUTISTIC YOUTH IN THE STUDY, 1002 00:33:49,680 --> 00:33:53,400 SO THAT'S UNDERWAY RIGHT NOW. 1003 00:33:53,400 --> 00:33:55,440 WE'LL BE EXCITED TO SHARE 1004 00:33:55,440 --> 00:33:57,200 FINDINGS FROM THAT STUDY AS THEY 1005 00:33:57,200 --> 00:33:58,160 EMERGE FROM THE COMING YEARS, 1006 00:33:58,160 --> 00:33:59,600 AND THERE'S AN IMPLEMENTATION 1007 00:33:59,600 --> 00:34:00,640 ASSESSMENT, A COST STUDY AS WELL 1008 00:34:00,640 --> 00:34:01,800 AS AN IMPACT ASSESSMENT. 1009 00:34:01,800 --> 00:34:03,880 SO IN OUR EXPERIENCE DURING 1010 00:34:03,880 --> 00:34:05,320 LARGE SCALE EVALUATIONS, IT'S 1011 00:34:05,320 --> 00:34:06,480 IMPORTANT TO UNDERSTAND ALL 1012 00:34:06,480 --> 00:34:08,040 THESE FEATURES OF AN 1013 00:34:08,040 --> 00:34:09,480 INTERVENTION. 1014 00:34:09,480 --> 00:34:10,880 NOT JUST THE -- QUOTE, THE PUNCH 1015 00:34:10,880 --> 00:34:12,280 LINE OF LATE, WAS THERE AN 1016 00:34:12,280 --> 00:34:16,120 EFFECT SIZE ON THE TARGET 1017 00:34:16,120 --> 00:34:16,400 POPULATION. 1018 00:34:16,400 --> 00:34:18,320 BUT THE IMPLEMENTATION ISSUES, 1019 00:34:18,320 --> 00:34:19,280 IF YOU WANTED TO SCALE THIS AND 1020 00:34:19,280 --> 00:34:21,320 ROLL IT OUT MORE WIDELY, WHAT 1021 00:34:21,320 --> 00:34:23,160 WERE THE CHALLENGES AND 1022 00:34:23,160 --> 00:34:23,960 LIMITATIONS THAT WOULD HAVE TO 1023 00:34:23,960 --> 00:34:25,360 BE ADDRESSED BY OTHERS WHO WOULD 1024 00:34:25,360 --> 00:34:26,520 HOPE TO REPLICATE THAT WORK, 1025 00:34:26,520 --> 00:34:27,840 WHAT ARE THE WAYS WE MIGHT 1026 00:34:27,840 --> 00:34:29,720 OVERCOME THOSE IMPLEMENTATION 1027 00:34:29,720 --> 00:34:30,720 CHALLENGES, AND HOW MUCH DOES IT 1028 00:34:30,720 --> 00:34:31,320 COST. 1029 00:34:31,320 --> 00:34:34,920 I THINK SOMETHING THAT IS OFTEN, 1030 00:34:34,920 --> 00:34:37,920 I WOULD SAY, UNDERADDRESSED AND 1031 00:34:37,920 --> 00:34:38,800 UNDERCONCEPTUALIZED IN A LOT OF 1032 00:34:38,800 --> 00:34:40,400 INTERVENTION RESEARCH IS, HOW 1033 00:34:40,400 --> 00:34:41,480 MUCH WILL THIS COST AND WHO'S 1034 00:34:41,480 --> 00:34:43,040 GOING TO PAY FOR IT IN THE LONG 1035 00:34:43,040 --> 00:34:46,080 RUN AND HOW WILL WE SUSTAIN THE 1036 00:34:46,080 --> 00:34:47,080 FINANCING OF NEW INTERVENTIONS 1037 00:34:47,080 --> 00:34:50,320 THAT ARE DEVELOPED WITH RESEARCH 1038 00:34:50,320 --> 00:34:50,640 FUNDS? 1039 00:34:50,640 --> 00:34:53,320 SO WE TEND TO OBSESS ON THAT 1040 00:34:53,320 --> 00:34:54,760 QUESTION HERE AT MATHEMATICA AND 1041 00:34:54,760 --> 00:34:56,200 IT'S SOMETHING WE'RE REALLY GOOD 1042 00:34:56,200 --> 00:34:57,840 AT, ANOTHER REASON WHY IT WAS 1043 00:34:57,840 --> 00:35:02,920 EXCITING TO JOIN THE TEAM HERE. 1044 00:35:02,920 --> 00:35:04,360 WE HAVE A NUMBER OF LEADING 1045 00:35:04,360 --> 00:35:05,800 ECONOMISTS IN THE DISABILITY AND 1046 00:35:05,800 --> 00:35:06,920 HUMAN SERVICES AREA WHO ARE JUST 1047 00:35:06,920 --> 00:35:08,400 EXPERTS AT THINKING ABOUT THESE 1048 00:35:08,400 --> 00:35:09,640 ISSUES OF COST, FINANCIAL 1049 00:35:09,640 --> 00:35:11,520 SUSTAINABILITY AND FINANCIAL 1050 00:35:11,520 --> 00:35:12,520 FEASIBILITY. 1051 00:35:12,520 --> 00:35:14,040 THEN OF COURSE IMPACT ANALYSIS. 1052 00:35:14,040 --> 00:35:15,400 DID THE PROGRAM HAVE AN EFFECT, 1053 00:35:15,400 --> 00:35:18,880 DID IT WORK, DID IT HAVE THE 1054 00:35:18,880 --> 00:35:20,360 INTENDED EFFECT, HOW BIG WAS THE 1055 00:35:20,360 --> 00:35:21,040 EFFECT SIZE? 1056 00:35:21,040 --> 00:35:22,040 OF COURSE THESE QUESTIONS ARE 1057 00:35:22,040 --> 00:35:28,160 ALWAYS OF INTEREST AS WELL. 1058 00:35:28,160 --> 00:35:30,080 THE HRSA AUTISM TRANSITIONS 1059 00:35:30,080 --> 00:35:33,080 RESEARCH PROJECT IS KIND OF A 1060 00:35:33,080 --> 00:35:34,160 MULTIFACETED PROJECT THAT'S 1061 00:35:34,160 --> 00:35:35,720 FUNDED THROUGH THE MATERNAL 1062 00:35:35,720 --> 00:35:39,200 CHILD HEALTH BUREAU, AND THE KEY 1063 00:35:39,200 --> 00:35:44,840 FEATURE REALLY REVOLVES AROUND 1064 00:35:44,840 --> 00:35:47,520 THE NATIONAL AUTISM DATA CENTER 1065 00:35:47,520 --> 00:35:51,800 WHEN I BUILT, AND IN THE FIRST 1066 00:35:51,800 --> 00:35:53,720 FIVE YEARS OF THAT FUNDED 1067 00:35:53,720 --> 00:35:55,720 PROJECT, IT WAS A JUGGERNAUT. 1068 00:35:55,720 --> 00:35:56,680 WE PRODUCED A LOT OF WORK. 1069 00:35:56,680 --> 00:35:58,720 WE GOT OVER 35 PUBLICATIONS, A 1070 00:35:58,720 --> 00:36:01,040 BUNCH MORE IN THE PIPELINE. 1071 00:36:01,040 --> 00:36:03,560 WE HAD A VERY STRONG EMPHASIS ON 1072 00:36:03,560 --> 00:36:05,120 TRAINING THE NEXT GENERATION OF 1073 00:36:05,120 --> 00:36:07,680 APPLIED PUBLIC HEALTH 1074 00:36:07,680 --> 00:36:09,640 RESEARCHERS, SO WE HAD 75 UNIQUE 1075 00:36:09,640 --> 00:36:10,640 AUTHORS ACROSS THOSE 1076 00:36:10,640 --> 00:36:11,840 PUBLICATIONS BECAUSE WE WERE 1077 00:36:11,840 --> 00:36:13,440 REALLY ALWAYS TRYING TO INCLUDE 1078 00:36:13,440 --> 00:36:14,880 TRAINEES AND DOCTORAL STUDENTS. 1079 00:36:14,880 --> 00:36:16,240 YOU KNOW, AGAIN, THAT WAS 1080 00:36:16,240 --> 00:36:19,080 SOMETHING I LEARNED AS A TRAY 1081 00:36:19,080 --> 00:36:20,280 FLEE, WAS THE IMPORTANCE OF 1082 00:36:20,280 --> 00:36:21,720 INVOLVING THE NEXT GENERATION IN 1083 00:36:21,720 --> 00:36:23,640 LEADERSHIP ROLES AND CONDUCTING 1084 00:36:23,640 --> 00:36:25,760 RESEARCH, DESIGN, ANALYSIS AND 1085 00:36:25,760 --> 00:36:27,400 PUBLICATION AND GRANT-WRITING TO 1086 00:36:27,400 --> 00:36:28,720 BUILD THAT PIPELINE OF TALENT TO 1087 00:36:28,720 --> 00:36:32,040 MOVE FORWARD IN THE FUTURE. 1088 00:36:32,040 --> 00:36:33,440 WE COVERED A LOT OF DIFFERENT 1089 00:36:33,440 --> 00:36:36,440 TOPICS IN THE FIRST FIVE YEARS, 1090 00:36:36,440 --> 00:36:37,680 RANGING FROM UNDERSTANDING THE 1091 00:36:37,680 --> 00:36:39,480 NATURE OF SERVICE ECOSYSTEMS AND 1092 00:36:39,480 --> 00:36:41,120 THE NATURE OF COLLABORATION 1093 00:36:41,120 --> 00:36:44,320 AMONG SERVICE PROVIDERS, LOOKING 1094 00:36:44,320 --> 00:36:46,240 AT HEALTH OUTCOMES, EQUITY 1095 00:36:46,240 --> 00:36:47,520 ISSUESMENT WE HAD A NUMBER OF 1096 00:36:47,520 --> 00:36:48,800 PAPERS FOCUSED ON EMPLOYMENT, 1097 00:36:48,800 --> 00:36:50,640 SOME POLICY PAPERS FOCUSED ON 1098 00:36:50,640 --> 00:36:53,160 THE IMPACT OF THE ROLLOUT OF THE 1099 00:36:53,160 --> 00:36:54,920 WIOA IN 2016. 1100 00:36:54,920 --> 00:36:55,280 MENTAL HEALTH. 1101 00:36:55,280 --> 00:36:57,040 YOU KNOW, MENTAL HEALTH IS STILL 1102 00:36:57,040 --> 00:37:07,520 SORT OF AN UND UNDERSTUDIED ARE. 1103 00:37:07,520 --> 00:37:10,320 IT'S STILL A FAIRLY 1104 00:37:10,320 --> 00:37:11,600 UNDERCONCEPTUALIZED AND 1105 00:37:11,600 --> 00:37:12,760 UNDERSTUDIED REALM OF ADULT 1106 00:37:12,760 --> 00:37:13,880 EXPERIENCE ON THE SPECTRUM. 1107 00:37:13,880 --> 00:37:15,360 AND THEN I THINK ONE OF THE 1108 00:37:15,360 --> 00:37:17,600 THINGS I'M MOST PROUD ABOUT IS I 1109 00:37:17,600 --> 00:37:18,840 HAD SOME COLLEAGUES, SOME 1110 00:37:18,840 --> 00:37:20,280 TRAINEES WHO REALLY RAN WITH THE 1111 00:37:20,280 --> 00:37:22,800 BALL AND PIONEERED A SERIES OF 1112 00:37:22,800 --> 00:37:24,680 PUBLICATIONS ON FINANCIAL 1113 00:37:24,680 --> 00:37:29,560 HARDSHIP AND SOCIAL SAFETY NET 1114 00:37:29,560 --> 00:37:30,120 PARTICIPATION. 1115 00:37:30,120 --> 00:37:32,280 IT HASN'T RECEIVED A LOT OF 1116 00:37:32,280 --> 00:37:33,200 ATTENTION BUT WE'VE FOUND THAT 1117 00:37:33,200 --> 00:37:35,760 ALMOST HALF OF AUTISTIC TEENS IN 1118 00:37:35,760 --> 00:37:37,560 THE UNITED STATES LIVE IN 1119 00:37:37,560 --> 00:37:39,720 EXTREMELY POOR, LOW-INCOME 1120 00:37:39,720 --> 00:37:43,600 HOUSEHOLDS, AND JUST OVER 1 IN N 1121 00:37:43,600 --> 00:37:45,600 HOUSEHOLDS AT OR BELOW THE 1122 00:37:45,600 --> 00:37:46,920 POVERTY LEVEL, A RATE THAT'S 1123 00:37:46,920 --> 00:37:48,320 MUCH HIGHER THAN THE AVERAGE 1124 00:37:48,320 --> 00:37:48,960 POPULATION. 1125 00:37:48,960 --> 00:37:49,680 ANYWAY, I'M NOT GOING TO GET 1126 00:37:49,680 --> 00:37:51,400 INTO THAT, BUT I WOULD LOVE TO 1127 00:37:51,400 --> 00:37:52,640 TALK TO FOLKS ABOUT THAT BECAUSE 1128 00:37:52,640 --> 00:37:54,040 THAT WAS KIND OF MY SOAP BOX. 1129 00:37:54,040 --> 00:37:58,000 WE DO ACBNOM H ACKNOWLEDGE HERET 1130 00:37:58,000 --> 00:37:58,800 MATHEMATICA THAT THE EXPERIENCE 1131 00:37:58,800 --> 00:38:03,560 OF HAVING A DISABILITY OFTEN 1132 00:38:03,560 --> 00:38:06,880 INTERSECTS IN THIS SORT OF 1133 00:38:06,880 --> 00:38:08,640 MULTIPLICATIVE WAY WITH OTHER 1134 00:38:08,640 --> 00:38:09,560 DIMENSIONS OF DISADVANTAGE 1135 00:38:09,560 --> 00:38:11,040 INCLUDING POVERTY AND EXCLUSION 1136 00:38:11,040 --> 00:38:12,480 BASED ON OTHER IDENTITIES. 1137 00:38:12,480 --> 00:38:17,520 SO WE HAVE A SECOND ROUND OF 1138 00:38:17,520 --> 00:38:18,280 FIVE-YEAR FUNDING THAT JUST 1139 00:38:18,280 --> 00:38:20,320 BEGAN AND WE'RE EXCITED TO 1140 00:38:20,320 --> 00:38:21,640 PIONEER NEW AND EXCITING 1141 00:38:21,640 --> 00:38:23,640 RESEARCH INCLUDING DEVELOPING 1142 00:38:23,640 --> 00:38:26,480 TRANSITION INTERVENTION FOR 1143 00:38:26,480 --> 00:38:28,040 LATINX AND HISPANIC YOUTH IN 1144 00:38:28,040 --> 00:38:32,760 PARTNERSHIP WITH OUR WONDERFUL 1145 00:38:32,760 --> 00:38:34,240 COLLEAGUE IN ARIZONA. 1146 00:38:34,240 --> 00:38:36,040 I'D LIKE TO MOVE ON NOW TO THE 1147 00:38:36,040 --> 00:38:37,800 NEXT SLIDE AND INTRODUCE MY 1148 00:38:37,800 --> 00:38:42,280 COLLEAGUE, ANKITA PATNAIK, WHO 1149 00:38:42,280 --> 00:38:44,760 WILL DO A PRESENTATION ABOUT OUR 1150 00:38:44,760 --> 00:38:47,000 OWODEP WORK. 1151 00:38:47,000 --> 00:38:48,800 I JUST WANT TO SAY THANK YOU TO 1152 00:38:48,800 --> 00:38:49,600 THE DEPARTMENT OF LABOR. 1153 00:38:49,600 --> 00:38:51,120 I WANT TO SAY WHAT A THRILL IT 1154 00:38:51,120 --> 00:38:54,880 IS TO SEE THE POOL OF FEDERAL 1155 00:38:54,880 --> 00:38:58,480 AGENCIES THAT ARE INVESTING AND 1156 00:38:58,480 --> 00:38:59,440 PIONEERING AUTISM RESEARCH. 1157 00:38:59,440 --> 00:39:01,120 THAT POOL IS DIVERSIFYING, 1158 00:39:01,120 --> 00:39:03,800 RIGHT, SO WE'VE GOT SSA, WE'VE 1159 00:39:03,800 --> 00:39:05,720 GOT ODEP, AND THIS INVESTMENT IN 1160 00:39:05,720 --> 00:39:07,040 PARTICULAR, IT'S A PIONEERING 1161 00:39:07,040 --> 00:39:08,400 INVESTMENT TO HAVE A FEDERAL 1162 00:39:08,400 --> 00:39:11,440 AGENCY THAT'S OUTSIDE THE USUAL 1163 00:39:11,440 --> 00:39:12,800 REALM OF RESEARCH SUBJECTS TO 1164 00:39:12,800 --> 00:39:15,800 COME IN AND INVEST IN THE TOPIC 1165 00:39:15,800 --> 00:39:16,520 OF EMPLOYMENT AND AUTISM. 1166 00:39:16,520 --> 00:39:18,160 IT A BIG MOVE, AND IT'S A VERY 1167 00:39:18,160 --> 00:39:20,720 LARGE INVESTMENT. 1168 00:39:20,720 --> 00:39:21,960 AND IT'S A REMARKABLE PROJECT 1169 00:39:21,960 --> 00:39:23,640 AND I JUST WANT TO THANK THE 1170 00:39:23,640 --> 00:39:24,920 LEADERSHIP AND THE VISION OF OUR 1171 00:39:24,920 --> 00:39:26,160 COLLEAGUES AT ODEP FOR TAKING 1172 00:39:26,160 --> 00:39:27,320 THIS BOLD STEP TO SUPPORT THIS 1173 00:39:27,320 --> 00:39:28,680 KIND OF RESEARCH. 1174 00:39:28,680 --> 00:39:29,520 ANKITA, TAKE IT AWAY. 1175 00:39:29,520 --> 00:39:31,960 >>THANKS VERY MUCH, PAUL. 1176 00:39:31,960 --> 00:39:32,520 HI, EVERYONE. 1177 00:39:32,520 --> 00:39:34,400 I'D LIKE TO START OFF BY JUST 1178 00:39:34,400 --> 00:39:35,640 SECONDING EVERYTHING PAUL SAID. 1179 00:39:35,640 --> 00:39:37,920 WE'RE SO GRATEFUL TO ODEP FOR 1180 00:39:37,920 --> 00:39:39,520 THIS INCREDIBLE OPPORTUNITY AND 1181 00:39:39,520 --> 00:39:41,600 THIS PIONEERING INVESTMENT ON 1182 00:39:41,600 --> 00:39:45,400 THIS TOPIC. 1183 00:39:45,400 --> 00:39:46,440 AS SCOTT MENTIONED, THE REYAAS 1184 00:39:46,440 --> 00:39:47,520 PROJECT BEGAN ABOUT ONE YEAR 1185 00:39:47,520 --> 00:39:48,960 AGO, AND WE HAVE THREE MORE 1186 00:39:48,960 --> 00:39:51,760 YEARS TO GO, SO I'M VERY EXCITED 1187 00:39:51,760 --> 00:39:54,200 TO BE SHARING SOME FINDINGS 1188 00:39:54,200 --> 00:39:55,440 TODAY FROM WHAT WE'VE LEARNED 1189 00:39:55,440 --> 00:39:58,360 DURING THE FIRST YEAR OF PROJECT 1190 00:39:58,360 --> 00:39:59,200 ACTIVITIES, AS WELL AS PROVIDING 1191 00:39:59,200 --> 00:40:01,360 AN OVERVIEW OF THE GOALS OF THE 1192 00:40:01,360 --> 00:40:03,400 PROJECT AND PREVIEWING SOME OF 1193 00:40:03,400 --> 00:40:06,000 WHAT WE HAVE PLANNED AND WHAT IS 1194 00:40:06,000 --> 00:40:09,000 IN THE WORKS FOR THE YEARS TO 1195 00:40:09,000 --> 00:40:09,240 COME. 1196 00:40:09,240 --> 00:40:11,120 SO WITH THAT, I WILL KICK OFF AN 1197 00:40:11,120 --> 00:40:12,960 INTRODUCTION TO THIS PROJECT. 1198 00:40:12,960 --> 00:40:14,160 WHICH AS YOU'VE HEARD A FEW 1199 00:40:14,160 --> 00:40:16,800 PEOPLE SAY IS NICKNAMED THE 1200 00:40:16,800 --> 00:40:17,880 REYAAS PROJECT. 1201 00:40:17,880 --> 00:40:19,760 THAT STANDS FOR RESEARCH SUPPORT 1202 00:40:19,760 --> 00:40:21,080 SERVICES FOR EMPLOYMENT OF YOUNG 1203 00:40:21,080 --> 00:40:23,280 ADULTS ON THE AUTISM SPECTRUM. 1204 00:40:23,280 --> 00:40:25,720 THE PROJECT IS FUNDED BY THE 1205 00:40:25,720 --> 00:40:26,640 U.S. DEPARTMENT OF LABOR. 1206 00:40:26,640 --> 00:40:27,760 I'D LIKE TO ALSO GIVE A SHOUT 1207 00:40:27,760 --> 00:40:29,520 OUT TO PAUL. 1208 00:40:29,520 --> 00:40:30,760 HE'S THE PRINCIPAL INVESTIGATOR 1209 00:40:30,760 --> 00:40:31,240 ON THIS PROJECT. 1210 00:40:31,240 --> 00:40:32,960 I AM THE PROJECT DIRECTOR AND 1211 00:40:32,960 --> 00:40:34,800 IT'S BEEN A REALLY WONDERFUL 1212 00:40:34,800 --> 00:40:36,800 PARTNERSHIP WITH PAUL AND OF 1213 00:40:36,800 --> 00:40:38,000 COURSE AN INCREDIBLE LEARNING 1214 00:40:38,000 --> 00:40:43,800 OPPORTUNITY FOR ME AS WELL. 1215 00:40:43,800 --> 00:40:44,640 ALL RIGHT. 1216 00:40:44,640 --> 00:40:46,280 SO THE REYAAS PROJECT IS REALLY 1217 00:40:46,280 --> 00:40:49,560 WELL CONNECTED TO QUESTION 6 IN 1218 00:40:49,560 --> 00:40:51,720 THE IACC STRATEGIC PLAN, WHICH 1219 00:40:51,720 --> 00:40:54,880 IS ABOUT SUPPORTING THE NEEDS OF 1220 00:40:54,880 --> 00:40:56,160 PEOPLE ON THE AUTISM SPECTRUM AS 1221 00:40:56,160 --> 00:40:58,680 THEY PROGRESS INTO ADULTHOOD. 1222 00:40:58,680 --> 00:41:01,520 THE GOALS OF THIS PROJECT ARE 1223 00:41:01,520 --> 00:41:03,120 SOME BIG ONES. 1224 00:41:03,120 --> 00:41:04,960 IT REALLY SEEKS TO UNDERSTAND 1225 00:41:04,960 --> 00:41:06,600 THE BARRIERS AND FACILITATORS 1226 00:41:06,600 --> 00:41:09,000 THAT ARE IN PLAY AS YOUNG ADULTS 1227 00:41:09,000 --> 00:41:11,640 ON THE AUTISM SPECTRUM ARE 1228 00:41:11,640 --> 00:41:14,360 TRANSITIONING FROM SCHOOL TO 1229 00:41:14,360 --> 00:41:15,400 WORK. 1230 00:41:15,400 --> 00:41:18,520 THE OBJECTIVE IS REALLY TO 1231 00:41:18,520 --> 00:41:19,960 IDENTIFY SPECIFIC PROGRAMS, 1232 00:41:19,960 --> 00:41:20,960 POLICIES, APPROACHES OR 1233 00:41:20,960 --> 00:41:22,680 PRACTICES THAT HAVE BEEN SHOWN 1234 00:41:22,680 --> 00:41:24,560 TO WORK IN FACILITATING 1235 00:41:24,560 --> 00:41:26,320 EMPLOYMENT FOR THIS POPULATION. 1236 00:41:26,320 --> 00:41:28,200 WE ALSO WANT TO TAKE STOCK OF 1237 00:41:28,200 --> 00:41:29,520 WHAT THE RESEARCH LITERATURE HAS 1238 00:41:29,520 --> 00:41:33,320 TO SAY, SO WHAT DO WE KNOW FROM 1239 00:41:33,320 --> 00:41:34,760 RIGOROUS EVIDENCE HAS WORKED SO 1240 00:41:34,760 --> 00:41:37,080 FAR, AND WHAT ARE THE GAPS IN 1241 00:41:37,080 --> 00:41:38,200 OUR KNOWLEDGE AND IN OUR 1242 00:41:38,200 --> 00:41:39,760 EVIDENCE. 1243 00:41:39,760 --> 00:41:42,560 AND AS A RESULT OF THAT KIND OF 1244 00:41:42,560 --> 00:41:44,160 TAKING STOCK AND IDENTIFICATION 1245 00:41:44,160 --> 00:41:46,440 OF GAPS, WE ARE WORKING WITH 1246 00:41:46,440 --> 00:41:49,280 ODEP TO SUGGEST NEW 1247 00:41:49,280 --> 00:41:52,200 EVIDENCE-BUILDING ACTIVITIES AND 1248 00:41:52,200 --> 00:41:54,200 OPPORTUNITIES TO PRODUCE MORE 1249 00:41:54,200 --> 00:41:56,280 KNOWLEDGE, MORE RIGOROUS 1250 00:41:56,280 --> 00:41:58,120 EVIDENCE ON WHAT CAN WORK TO 1251 00:41:58,120 --> 00:41:59,400 SUPPORT YOUNG ADULTS ON THE 1252 00:41:59,400 --> 00:42:07,360 AUTISM SPECTRUM WHO ARE SEEKING 1253 00:42:07,360 --> 00:42:07,800 EMPLOYMENT. 1254 00:42:07,800 --> 00:42:09,840 SO TO ACHIEVE THESE GOALS, 1255 00:42:09,840 --> 00:42:10,840 REYAAS HAS SEVERAL DIFFERENT 1256 00:42:10,840 --> 00:42:11,600 PROJECT ACTIVITIES. 1257 00:42:11,600 --> 00:42:13,360 THE FIRST SET OF ACTIVITIES IS 1258 00:42:13,360 --> 00:42:14,760 REALLY FOCUSED ON KNOWLEDGE 1259 00:42:14,760 --> 00:42:15,080 DEVELOPMENT. 1260 00:42:15,080 --> 00:42:18,160 AS I MENTIONED, WE CONDUCTED TWO 1261 00:42:18,160 --> 00:42:21,480 LARGE LITERATURE REVIEWS, WHICH 1262 00:42:21,480 --> 00:42:22,760 I WILL SUMMARIZE IN A FEW 1263 00:42:22,760 --> 00:42:23,000 MINUTES. 1264 00:42:23,000 --> 00:42:24,240 IN ORDER TO UNDERSTAND WHAT THE 1265 00:42:24,240 --> 00:42:26,600 RESEARCH LITERATURE HAS TO SAY 1266 00:42:26,600 --> 00:42:30,480 ON PROGRAMS THAT EXIST THAT AIM 1267 00:42:30,480 --> 00:42:31,880 TO SUPPORT EMPLOYMENT OUTCOMES 1268 00:42:31,880 --> 00:42:33,840 FOR YOUNG AUTISTIC ADULTS, AS 1269 00:42:33,840 --> 00:42:35,040 WELL AS WHAT WE KNOW ABOUT THE 1270 00:42:35,040 --> 00:42:38,000 EFFECTIVENESS OF THESE PROGRAMS. 1271 00:42:38,000 --> 00:42:41,120 WE ALSO VERY EXCITINGLY HELD 1272 00:42:41,120 --> 00:42:42,720 LISTENING SESSIONS WITH KEY 1273 00:42:42,720 --> 00:42:45,720 PLAYERS IN THIS SPACE, MOST 1274 00:42:45,720 --> 00:42:47,120 IMPORTANT OF WHICH, OF COURSE, 1275 00:42:47,120 --> 00:42:49,320 ARE ADULTS ON THE AUTISM 1276 00:42:49,320 --> 00:42:50,840 SPECTRUM THEMSELVES, SO WE HELD 1277 00:42:50,840 --> 00:42:52,080 PUBLIC LISTENING SESSIONS THAT 1278 00:42:52,080 --> 00:42:53,600 INVITED YOUNG ADULTS AND THEIR 1279 00:42:53,600 --> 00:42:54,600 FAMILY MEMBERS TO COME TALK TO 1280 00:42:54,600 --> 00:42:55,800 US AND TELL US ABOUT THEIR 1281 00:42:55,800 --> 00:42:57,040 EMPLOYMENT EXPERIENCES, WHAT 1282 00:42:57,040 --> 00:43:01,320 THEIR GOALS ARE, WHAT THEIR 1283 00:43:01,320 --> 00:43:02,880 PERCEIVED CHALLENGES AND IDEAS 1284 00:43:02,880 --> 00:43:04,840 ARE FOR HOW WE CAN SUPPORT THEIR 1285 00:43:04,840 --> 00:43:09,040 TRANSITION FROM SCHOOL TO WORK. 1286 00:43:09,040 --> 00:43:10,560 AND WE ALSO HOLD CONTINUOUS 1287 00:43:10,560 --> 00:43:11,600 DISCUSSION WITH A TECHNICAL 1288 00:43:11,600 --> 00:43:13,920 WORKING GROUP WHICH COMPRISES 1289 00:43:13,920 --> 00:43:15,600 EXTERNAL EXPERTS OUTSIDE OF 1290 00:43:15,600 --> 00:43:17,400 MATHEMATICA WHO MAY HAVE 1291 00:43:17,400 --> 00:43:18,960 EXPERTISE IN ADVOCACY IN THIS 1292 00:43:18,960 --> 00:43:21,360 SPACE, RESEARCH IN THIS SPACE, 1293 00:43:21,360 --> 00:43:23,600 OR OUR FEDERAL POLICY MAKERS. 1294 00:43:23,600 --> 00:43:26,240 WE ARE CONDUCTING ANALYSES OF 1295 00:43:26,240 --> 00:43:28,960 EXISTING DATA, SO WHAT 1296 00:43:28,960 --> 00:43:30,080 ADMINISTRATIVE AND SURVEY DATA 1297 00:43:30,080 --> 00:43:32,520 DO EXIST ON THIS TOPIC. 1298 00:43:32,520 --> 00:43:34,840 WE HAVE CREATED AN INVENTORY OF 1299 00:43:34,840 --> 00:43:36,520 THESE DATA SOURCES AND WE HAVE 1300 00:43:36,520 --> 00:43:38,840 SELECTED A DATA SOURCE TO DIVE 1301 00:43:38,840 --> 00:43:40,760 INTO TO GET AT SOME REALLY 1302 00:43:40,760 --> 00:43:42,480 INTERESTING RESEARCH QUESTIONS, 1303 00:43:42,480 --> 00:43:43,520 AND I WILL COVER THAT IN A 1304 00:43:43,520 --> 00:43:45,520 MOMENT. 1305 00:43:45,520 --> 00:43:46,920 IN PARTNERSHIP WITH ODEP, WE ARE 1306 00:43:46,920 --> 00:43:49,480 ALSO DEVELOPING OPTIONS AND 1307 00:43:49,480 --> 00:43:52,240 RECOMMENDATIONS FOR EVALUATION 1308 00:43:52,240 --> 00:43:53,560 DESIGNS, SO THIS IS AN ACTIVITY 1309 00:43:53,560 --> 00:43:56,000 WHERE WE ARE SUGGESTING NEW 1310 00:43:56,000 --> 00:43:56,960 EVIDENCE-BUILDING ACTIVITIES 1311 00:43:56,960 --> 00:43:58,160 THAT WOULD OCCUR OUTSIDE OF THE 1312 00:43:58,160 --> 00:43:58,800 REYAAS PROJECT. 1313 00:43:58,800 --> 00:44:00,680 SO THIS IS FOR THE FUTURE, 1314 00:44:00,680 --> 00:44:02,400 INCLUDING THE POSSIBILITY OF 1315 00:44:02,400 --> 00:44:04,640 DEMONSTRATION PROJECTS. 1316 00:44:04,640 --> 00:44:07,040 AN OPTIONAL TASK UNDER REYAAS IS 1317 00:44:07,040 --> 00:44:08,600 TO CONDUCT SURVEYS OF YOUNG 1318 00:44:08,600 --> 00:44:10,160 ADULTS AND STAKEHOLDERS IN THE 1319 00:44:10,160 --> 00:44:12,080 SPACE, WHICH INCLUDE EMPLOYERS 1320 00:44:12,080 --> 00:44:14,280 AND ADVOCATES, FOR EXAMPLE. 1321 00:44:14,280 --> 00:44:15,760 THE GOAL OF THAT ACTIVITY WOULD 1322 00:44:15,760 --> 00:44:18,760 BE TO CREATE A WHOLE NEW DATA 1323 00:44:18,760 --> 00:44:20,960 SOURCE THAT CONTAINS THE 1324 00:44:20,960 --> 00:44:22,280 NECESSARY INFORMATION TO REALLY 1325 00:44:22,280 --> 00:44:24,280 DIG INTO THIS TOPIC. 1326 00:44:24,280 --> 00:44:26,480 THIS WOULD BE A SURVEY DATASET 1327 00:44:26,480 --> 00:44:33,640 IF THE TASK IS ECK EXERCISED, IT 1328 00:44:33,640 --> 00:44:35,200 WOULD BE A CONTRIBUTION TO THE 1329 00:44:35,200 --> 00:44:36,680 RESEARCH FIELD AS IT WOULD 1330 00:44:36,680 --> 00:44:38,040 LIKELY BE AVAILABLE TO OTHER 1331 00:44:38,040 --> 00:44:39,040 RESEARCHERS IN SOME FORM AS 1332 00:44:39,040 --> 00:44:40,000 WELL. 1333 00:44:40,000 --> 00:44:41,760 AND FINALLY, OF COURSE, WE DON'T 1334 00:44:41,760 --> 00:44:43,880 WANT TO BE CONDUCTING OUR 1335 00:44:43,880 --> 00:44:44,840 RESEARCH IN ISOLATION. 1336 00:44:44,840 --> 00:44:47,320 IT'S ONLY USEFUL IF IT'S 1337 00:44:47,320 --> 00:44:48,760 SPREADING THE WORD AND INFORMING 1338 00:44:48,760 --> 00:44:52,120 BOTH RESEARCH AND POLICY 1339 00:44:52,120 --> 00:44:54,760 PRIORITIES, AND SO DISSEMINATING 1340 00:44:54,760 --> 00:44:55,800 THE FINDINGS AND THE INSIGHTS 1341 00:44:55,800 --> 00:44:58,280 THAT WE GLEANED FROM OUR 1342 00:44:58,280 --> 00:44:59,160 KNOWLEDGE-BUILDING AND 1343 00:44:59,160 --> 00:45:00,240 EVIDENCE-BUILDING ACTIVITIES IS 1344 00:45:00,240 --> 00:45:01,760 A VERY IMPORTANT PART OF THIS 1345 00:45:01,760 --> 00:45:07,760 PROJECT AS WELL. 1346 00:45:07,760 --> 00:45:09,000 SO AS I MENTIONED, WE CONDUCTED 1347 00:45:09,000 --> 00:45:10,640 A LITERATURE SEARCH THAT HAD TWO 1348 00:45:10,640 --> 00:45:11,680 GOALS. 1349 00:45:11,680 --> 00:45:13,840 THE FIRST WAS TO IDENTIFY AND 1350 00:45:13,840 --> 00:45:15,960 SUMMARIZE THE RANGE OF PROGRAMS, 1351 00:45:15,960 --> 00:45:17,480 MODELS AND STRATEGIES THAT ARE 1352 00:45:17,480 --> 00:45:20,080 BEING USED TO SUPPORT THE 1353 00:45:20,080 --> 00:45:22,480 EMPLOYMENT FOR YOUNG PEOPLE WITH 1354 00:45:22,480 --> 00:45:23,040 DEVELOPMENTAL DISABILITIES, 1355 00:45:23,040 --> 00:45:24,520 INCLUDING YOUNG AUTISTIC PEOPLE. 1356 00:45:24,520 --> 00:45:26,160 AND THE SECOND GOAL WAS TO 1357 00:45:26,160 --> 00:45:27,400 EXAMINE THE EVIDENCE ON THESE 1358 00:45:27,400 --> 00:45:30,200 PROGRAMS, SO WE KNOW WHAT -- 1359 00:45:30,200 --> 00:45:31,960 FROM GOAL ONE, WE KNOW WHAT 1360 00:45:31,960 --> 00:45:33,120 EXISTS OUT THERE, WHAT IS BEING 1361 00:45:33,120 --> 00:45:34,320 DONE OUT THERE. 1362 00:45:34,320 --> 00:45:37,280 BUT THE SECOND GOAL IS TO REALLY 1363 00:45:37,280 --> 00:45:38,320 UNDERSTAND WHETHER THESE 1364 00:45:38,320 --> 00:45:40,560 PROGRAMS AND PRACTICES ARE 1365 00:45:40,560 --> 00:45:43,280 EFFECTIVE IN HELPING YOUNG 1366 00:45:43,280 --> 00:45:44,600 AUTISTIC PEOPLE GET EMPLOYMENT 1367 00:45:44,600 --> 00:45:51,120 AND KEEP EMPLOYMENT. 1368 00:45:51,120 --> 00:45:52,320 SO WE CONDUCTED A LITERATURE 1369 00:45:52,320 --> 00:45:54,080 SEARCH THAT LOOKED AT PUBLISHED 1370 00:45:54,080 --> 00:45:56,360 RESEARCH LITERATURE AS WELL AS 1371 00:45:56,360 --> 00:45:58,920 FREE LITERATURE BY RELATED 1372 00:45:58,920 --> 00:46:00,960 ORGANIZATIONS, AND WE IDENTIFIED 1373 00:46:00,960 --> 00:46:03,560 A WIDE RANGE OF ABOUT 140 1374 00:46:03,560 --> 00:46:05,160 PROGRAMS IN THE UNITED STATES 1375 00:46:05,160 --> 00:46:07,240 THAT HAVE THE GOAL OF SUPPORTING 1376 00:46:07,240 --> 00:46:09,640 EMPLOYMENT OUTCOMES OF YOUNG 1377 00:46:09,640 --> 00:46:11,200 ADULTS WITH DEVELOPMENTAL 1378 00:46:11,200 --> 00:46:12,280 DISABILITIES, INCLUDING YOUNG 1379 00:46:12,280 --> 00:46:13,440 AUTISTIC ADULTS. 1380 00:46:13,440 --> 00:46:16,480 MORE THAN HALF OF THESE 140 OR 1381 00:46:16,480 --> 00:46:18,280 SO PROGRAMS EXCLUSIVELY SERVE 1382 00:46:18,280 --> 00:46:21,480 YOUNG ADULTS ON THE AUTISM 1383 00:46:21,480 --> 00:46:21,760 SPECTRUM. 1384 00:46:21,760 --> 00:46:23,640 IN THIS GRAPH, YOU SEE AN 1385 00:46:23,640 --> 00:46:24,240 ILLUSTRATION OF THE DIFFERENT 1386 00:46:24,240 --> 00:46:25,840 TYPES OF STRATEGIES THAT ARE 1387 00:46:25,840 --> 00:46:28,720 BEING USED BY THESE PROGRAMS TO 1388 00:46:28,720 --> 00:46:30,880 SUPPORT EMPLOYMENT. 1389 00:46:30,880 --> 00:46:32,400 MANY OF THESE PROGRAMS INCLUDE 1390 00:46:32,400 --> 00:46:34,160 COMPONENTS SUCH AS SOFT SKILLS 1391 00:46:34,160 --> 00:46:34,440 TRAINING. 1392 00:46:34,440 --> 00:46:35,520 IT'S ONE OF THE MOST COMMON 1393 00:46:35,520 --> 00:46:37,920 STRATEGIES THAT'S BEING USED. 1394 00:46:37,920 --> 00:46:40,280 COACHING OR MENTORING, JOB 1395 00:46:40,280 --> 00:46:41,560 SEARCH ASSISTANCE, JOB 1396 00:46:41,560 --> 00:46:43,040 DEVELOPMENT AND JOB TRAINING. 1397 00:46:43,040 --> 00:46:44,400 THOSE ARE THREE OF THE MOST 1398 00:46:44,400 --> 00:46:46,000 COMMONLY USED STRATEGIES IN THE 1399 00:46:46,000 --> 00:46:47,840 PROGRAMS THAT WE FOUND. 1400 00:46:47,840 --> 00:46:49,560 BUT OF COURSE MANY OF THE 1401 00:46:49,560 --> 00:46:54,280 PROGRAMS COMBINE MULTIPLE 1402 00:46:54,280 --> 00:46:54,600 COMPONENTS. 1403 00:46:54,600 --> 00:46:56,320 SOME OF THESE FOCUS ON 1404 00:46:56,320 --> 00:46:57,080 TRANSITION PLANNING SUPPORT FOR 1405 00:46:57,080 --> 00:46:58,720 HIGH SCHOOL STUDENTS AS WELL. 1406 00:46:58,720 --> 00:47:01,040 I WANT TO FOCUS ON ONE TYPE OF 1407 00:47:01,040 --> 00:47:02,120 STRATEGY IN PARTICULAR, AND THAT 1408 00:47:02,120 --> 00:47:03,680 IS WORK EXPERIENCE. 1409 00:47:03,680 --> 00:47:06,160 MORE GENERALLY FROM THE RESEARCH 1410 00:47:06,160 --> 00:47:09,480 LITERATURE, WE HAVE FOUND THAT 1411 00:47:09,480 --> 00:47:11,040 WORK EXPERIENCE IS CONSIDERED AN 1412 00:47:11,040 --> 00:47:11,600 EVIDENCE-BASED PRACTICE TO 1413 00:47:11,600 --> 00:47:12,640 SUPPORT THE TRANSITION FROM 1414 00:47:12,640 --> 00:47:14,000 SCHOOL TO WORK FOR YOUNG PEOPLE 1415 00:47:14,000 --> 00:47:16,440 WITH DISABILITIES. 1416 00:47:16,440 --> 00:47:19,760 OF THE 140 OR SO M PRAPS PROGRT 1417 00:47:19,760 --> 00:47:21,800 WE FOUND, ABOUT 4 IN EVERY 10 OF 1418 00:47:21,800 --> 00:47:23,040 THOSE PROGRAMS INCLUDED WORK 1419 00:47:23,040 --> 00:47:24,240 EXPERIENCE AS A COMPONENT, AND 1420 00:47:24,240 --> 00:47:26,880 AS I MENTIONED, MANY OF THESE 1421 00:47:26,880 --> 00:47:28,120 APPROACHES COMBINE SEVERAL 1422 00:47:28,120 --> 00:47:30,760 STRATEGIES, SO FOR EXAMPLE, 1423 00:47:30,760 --> 00:47:31,680 PROGRAMS MIGHT COMBINE WORK 1424 00:47:31,680 --> 00:47:33,640 EXPERIENCE WITH ANOTHER SUPPORT 1425 00:47:33,640 --> 00:47:35,840 SUCH AS SOFT SKILLS, SUCH AS 1426 00:47:35,840 --> 00:47:37,400 PROVIDING PEOPLE WITH SOFT 1427 00:47:37,400 --> 00:47:38,640 SKILLS EXPERIENCE, SOFT SKILLS 1428 00:47:38,640 --> 00:47:40,440 TRAINING BEFORE OFFERING THEM A 1429 00:47:40,440 --> 00:47:42,880 WORK EXPERIENCE OPPORTUNITY. 1430 00:47:42,880 --> 00:47:44,080 WE FOUND THAT MORE THAN HALF OF 1431 00:47:44,080 --> 00:47:48,160 THE PROGRAMS GENERALLY PROVIDED 1432 00:47:48,160 --> 00:47:49,240 WORK EXPERIENCES BUT ONLY ABOUT 1433 00:47:49,240 --> 00:47:50,640 A QUARTER OF THE PROGRAMS THAT 1434 00:47:50,640 --> 00:47:53,280 ONLY SERVE YOUNG AUTISTIC ADULTS 1435 00:47:53,280 --> 00:47:55,920 PROVIDED WORK EXPERIENCES. 1436 00:47:55,920 --> 00:47:57,720 WE DID FIND THAT VERY FEW OF THE 1437 00:47:57,720 --> 00:47:59,440 PROGRAMS FOCUSED ON MENTAL 1438 00:47:59,440 --> 00:48:01,640 HEALTH SUPPORTS ON OCCUPATIONAL 1439 00:48:01,640 --> 00:48:03,920 TRAINING, OR ON SERVICES THAT 1440 00:48:03,920 --> 00:48:05,080 ADDRESSED THE EMPLOYER SIDE OF 1441 00:48:05,080 --> 00:48:05,440 THINGS. 1442 00:48:05,440 --> 00:48:11,240 SO PROGRAMS THAT AIMED TO HELP 1443 00:48:11,240 --> 00:48:12,800 EMPLOYERS' ABILITY TO HIRE AND 1444 00:48:12,800 --> 00:48:14,400 SUPPORT YOUNG AUTISTIC PEOPLE OR 1445 00:48:14,400 --> 00:48:16,880 YOUNG PEOPLE WITH INTELLECTUAL 1446 00:48:16,880 --> 00:48:17,560 AND DEVELOPMENTAL DISABILITIES 1447 00:48:17,560 --> 00:48:20,280 WHILE THEY WERE ON THE JOB. 1448 00:48:20,280 --> 00:48:21,760 WE ALSO FOUND MANY PROGRAMS ARE 1449 00:48:21,760 --> 00:48:23,120 PILOT PROGRAMS 1450 00:48:23,120 --> 00:48:25,080 [RECORDING STOPPED] 1451 00:48:25,080 --> 00:48:27,440 , THEY ARE RESOURCE-INTENSIVE, 1452 00:48:27,440 --> 00:48:29,080 WHICH MAKES IT CHALLENGING TO 1453 00:48:29,080 --> 00:48:30,400 REPLICATE THEM MORE BROADLY OR 1454 00:48:30,400 --> 00:48:33,280 SCALE THEM. 1455 00:48:33,280 --> 00:48:37,240 OTHERS FACED CHALLENGES 1456 00:48:37,240 --> 00:48:38,920 RECRUITING YOUTH WHILE THEY WERE 1457 00:48:38,920 --> 00:48:41,880 IN HIGH SCHOOL OR ESTABLISHING 1458 00:48:41,880 --> 00:48:42,680 PARTNERSHIPS WITH SCHOOLS THAT 1459 00:48:42,680 --> 00:48:44,000 MIGHT HELP WITH RECRUITMENT OR 1460 00:48:44,000 --> 00:48:50,800 WITH JOB PLACEMENTS. 1461 00:48:50,800 --> 00:48:53,600 SO OF THOSE 140 OR SO PROGRAMS, 1462 00:48:53,600 --> 00:48:55,600 62 STUDIES EXISTED THAT PROVIDED 1463 00:48:55,600 --> 00:48:57,120 EVIDENCE ON WHETHER OR NOT THESE 1464 00:48:57,120 --> 00:48:59,560 PROGRAMS, STRATEGIES, PRACTICES, 1465 00:48:59,560 --> 00:49:04,120 ET CETERA, WERE OR WERE NOT 1466 00:49:04,120 --> 00:49:04,400 EFFECTIVE. 1467 00:49:04,400 --> 00:49:06,320 17 OF THOSE 62 EFFECTIVENESS 1468 00:49:06,320 --> 00:49:07,640 STUDIES FOCUSED SPECIFICALLY ON 1469 00:49:07,640 --> 00:49:11,560 EMPLOYMENT OUTCOMES. 1470 00:49:11,560 --> 00:49:13,280 WE FOUND IN GENERAL, WE DON'T 1471 00:49:13,280 --> 00:49:14,680 KNOW A LOT ABOUT THE 1472 00:49:14,680 --> 00:49:15,600 EFFECTIVENESS OF THESE 1473 00:49:15,600 --> 00:49:16,400 STRATEGIES. 1474 00:49:16,400 --> 00:49:20,040 SO OF THE MANY PROGRAMS THAT WE 1475 00:49:20,040 --> 00:49:22,000 HAVE FOUND, THERE WERE ONLY SIX 1476 00:49:22,000 --> 00:49:24,800 RIGOROUS STUDIES THAT COULD 1477 00:49:24,800 --> 00:49:25,880 PROVIDE SORT OF -- 1478 00:49:25,880 --> 00:49:27,680 [RECORDING IN PROGRESS] 1479 00:49:27,680 --> 00:49:28,480 -- STRONG EVIDENCE ON WHETHER 1480 00:49:28,480 --> 00:49:29,720 OR NOT THESE PROGRAMS AND 1481 00:49:29,720 --> 00:49:33,720 STRATEGIES WERE EVENTTIV EFFECTY 1482 00:49:33,720 --> 00:49:35,000 HELPING YOUNG ADULTS IMPROVE 1483 00:49:35,000 --> 00:49:35,800 THEIR EMPLOYMENT PROGRAMS. 1484 00:49:35,800 --> 00:49:37,560 SO WE DEFINED RIGOROUS 1485 00:49:37,560 --> 00:49:39,840 EVALUATIONS AS EITHER RANDOMIZED 1486 00:49:39,840 --> 00:49:41,480 CONTROL TRIALS OR QUASI 1487 00:49:41,480 --> 00:49:42,280 EXPERIMENTAL DESIGNS. 1488 00:49:42,280 --> 00:49:44,840 I'LL QUICKLY RECAP WHAT THOSE 1489 00:49:44,840 --> 00:49:46,040 MEAN. 1490 00:49:46,040 --> 00:49:48,480 A RANDOMIZED CONTROL TRIAL IS 1491 00:49:48,480 --> 00:49:49,800 GENERALLY WHERE YOU ENROLL A 1492 00:49:49,800 --> 00:49:51,320 LARGE NUMBER OF YOUNG ADULTS AND 1493 00:49:51,320 --> 00:49:52,600 YOU RANDOMLY ASSIGN SOME OF THEM 1494 00:49:52,600 --> 00:49:54,240 TO A TREATMENT GROUP WHEREIN 1495 00:49:54,240 --> 00:49:55,920 THEY GET THE INTERVENTION, WHICH 1496 00:49:55,920 --> 00:49:57,480 MEANS THEY CAN PARTICIPATE IN 1497 00:49:57,480 --> 00:49:58,840 THE PROGRAM OR THE STRATEGY OR 1498 00:49:58,840 --> 00:50:01,440 THE APPROACH, AND THE OTHERS ARE 1499 00:50:01,440 --> 00:50:03,400 RANDOMLY ASSIGNED TO A CONTROL 1500 00:50:03,400 --> 00:50:04,440 GROUP, WHERE THEY TYPICALLY 1501 00:50:04,440 --> 00:50:05,800 CANNOT ACCESS THE PROGRAM OR AT 1502 00:50:05,800 --> 00:50:09,040 LEAST CANNOT ACCESS THE PROGRAM 1503 00:50:09,040 --> 00:50:10,120 FOR A CERTAIN PERIOD OF TIME, 1504 00:50:10,120 --> 00:50:10,800 SUCH AS A WAIT LIST. 1505 00:50:10,800 --> 00:50:15,240 IN A QAI S QUASI EXPERIMENTAL D, 1506 00:50:15,240 --> 00:50:17,280 THERE'S NO RANDOM ASSIGNMENT OF 1507 00:50:17,280 --> 00:50:18,440 PEOPLE, HOWEVER, YOU DO COMPARE 1508 00:50:18,440 --> 00:50:20,120 PEOPLE WHO ARE SIMILAR IN THEIR 1509 00:50:20,120 --> 00:50:20,760 BASELINE CHARACTERISTICS BEFORE 1510 00:50:20,760 --> 00:50:24,080 THEY GET AN INTERVENTION, AND 1511 00:50:24,080 --> 00:50:26,160 ONLY SOME SUBSET OF PARTICIPANTS 1512 00:50:26,160 --> 00:50:27,280 IN THE STUDY GET THE 1513 00:50:27,280 --> 00:50:27,800 INTERVENTION. 1514 00:50:27,800 --> 00:50:29,160 SO WHEN YOU COMPARE THEIR 1515 00:50:29,160 --> 00:50:31,960 OUTCOMES, YOU CAN REASONABLY 1516 00:50:31,960 --> 00:50:33,280 ATTRIBUTE ANY DIFFERENCES IN 1517 00:50:33,280 --> 00:50:34,640 THEIR OUTCOMES TO BEING THE 1518 00:50:34,640 --> 00:50:35,960 CAUSAL RESULT OF THE 1519 00:50:35,960 --> 00:50:39,800 INTERVENTION THAT THEY RECEIVED. 1520 00:50:39,800 --> 00:50:42,320 SO WE FOUND THREE RANDOMIZED 1521 00:50:42,320 --> 00:50:44,240 CONTROL TRIALS THAT HAD BEEN 1522 00:50:44,240 --> 00:50:45,840 CONDUCTED OF A PROGRAM KNOWN AS 1523 00:50:45,840 --> 00:50:47,960 PROJECT SEARCH PLUS ASD 1524 00:50:47,960 --> 00:50:48,240 SUPPORTS. 1525 00:50:48,240 --> 00:50:49,200 I IMAGINE MANY OF THE PEOPLE ON 1526 00:50:49,200 --> 00:50:50,760 THIS CALL ARE FAMILIAR WITH THAT 1527 00:50:50,760 --> 00:50:51,280 MODEL. 1528 00:50:51,280 --> 00:50:53,600 IT IS A VARIATION OF THE PROJECT 1529 00:50:53,600 --> 00:50:55,600 SEARCH MODEL THAT HAS BEEN 1530 00:50:55,600 --> 00:50:57,360 ADAPTED SPECIFICALLY FOR YOUNG 1531 00:50:57,360 --> 00:51:00,560 PEOPLE ON THE AUTISM SPECTRUM, 1532 00:51:00,560 --> 00:51:02,520 AND IT'S A TRANSITION-BASED 1533 00:51:02,520 --> 00:51:03,920 EMPLOYMENT MODEL FOR HIGH SCHOOL 1534 00:51:03,920 --> 00:51:04,160 STUDENTS. 1535 00:51:04,160 --> 00:51:06,160 THOSE SHOWED PROMISING RESULTS 1536 00:51:06,160 --> 00:51:08,200 WITH MORE PEOPLE WHO 1537 00:51:08,200 --> 00:51:10,480 PARTICIPATED IN PROJECT SEARCH 1538 00:51:10,480 --> 00:51:12,000 HAVING EMPLOYMENT AT THE END OF 1539 00:51:12,000 --> 00:51:13,880 THE OBSERVATION PERIOD THAN THE 1540 00:51:13,880 --> 00:51:15,680 CONTROL GROUP THAT WAS NOT 1541 00:51:15,680 --> 00:51:16,920 PARTICIPATING IN PROJECT SEARCH 1542 00:51:16,920 --> 00:51:18,360 PLUS ASD. 1543 00:51:18,360 --> 00:51:21,800 WE ALSO IDENTIFIED TWO 1544 00:51:21,800 --> 00:51:24,760 RANDOMIZED CONTROL TRIALS IN A 1545 00:51:24,760 --> 00:51:26,200 TRAINING PROGRAM THAT SHOWED 1546 00:51:26,200 --> 00:51:28,360 PARTICIPANTS WERE MOSH LIKELY TO 1547 00:51:28,360 --> 00:51:29,560 SECURE COMPETITIVE INTEGRATED 1548 00:51:29,560 --> 00:51:30,680 EMPLOYMENT AT HIGHER RATES 1549 00:51:30,680 --> 00:51:31,800 COMPARED TO THE CONTROL GROUP. 1550 00:51:31,800 --> 00:51:34,360 LASTLY WE FOUND ONE QUASI 1551 00:51:34,360 --> 00:51:35,080 EXPERIMENTAL STUDY. 1552 00:51:35,080 --> 00:51:36,560 THE PROGRAM THAT WAS BEING 1553 00:51:36,560 --> 00:51:38,200 EXAMINED WAS ADDING SUPPORTED 1554 00:51:38,200 --> 00:51:42,600 EMPLOYMENT SERVICES TO 1555 00:51:42,600 --> 00:51:43,160 VOCATIONAL REHABILITATION 1556 00:51:43,160 --> 00:51:44,120 CLIENTS' EXPERIENCES, AND WE 1557 00:51:44,120 --> 00:51:46,720 FOUND THAT IT DID INCREASE THE 1558 00:51:46,720 --> 00:51:49,880 SHARE OF CLIENTS WHO ATTAINED 1559 00:51:49,880 --> 00:51:50,360 COMPETITIVE INTEGRATED 1560 00:51:50,360 --> 00:51:58,320 EMPLOYMENT. 1561 00:51:58,320 --> 00:52:00,400 SO AS I MENTIONED WE CONDUCTED 1562 00:52:00,400 --> 00:52:01,400 THESE LISTENING SESSIONS AS PART 1563 00:52:01,400 --> 00:52:02,600 OF OUR KNOWLEDGE DEVELOPMENT 1564 00:52:02,600 --> 00:52:03,600 ACTIVITIES, AND LISTENING 1565 00:52:03,600 --> 00:52:04,760 SESSIONS WERE HELD WITH A RANGE 1566 00:52:04,760 --> 00:52:06,680 OF KEY PLAYERS IN THIS SPACE. 1567 00:52:06,680 --> 00:52:08,480 AS I MENTIONED, WE HELD 1568 00:52:08,480 --> 00:52:09,760 LISTENING SESSIONS WITH YOUNG 1569 00:52:09,760 --> 00:52:11,000 ADULTS ON THE AUTISM SPECTRUM AS 1570 00:52:11,000 --> 00:52:12,640 WELL AS THEIR FAMILY MEMBERS. 1571 00:52:12,640 --> 00:52:14,960 WE HELD ABOUT FOUR OF THESE 1572 00:52:14,960 --> 00:52:18,320 SESSIONS IN SPRING 2022. 1573 00:52:18,320 --> 00:52:21,640 ALL ACROSS THE SESSIONS ABOUT 1574 00:52:21,640 --> 00:52:23,000 100 YOUNG ADULTS ON THE AUTISM 1575 00:52:23,000 --> 00:52:24,520 SPECTRUM JOINED US AND SHARED 1576 00:52:24,520 --> 00:52:26,360 THEIR VIEWPOINTS. 1577 00:52:26,360 --> 00:52:31,400 PARTICIPATION WAS OF COURSE 1578 00:52:31,400 --> 00:52:32,360 VOLUNTARY, IT WAS OPTIONALLY 1579 00:52:32,360 --> 00:52:32,880 ANONYMOUS. 1580 00:52:32,880 --> 00:52:35,480 FOLKS WERE FREE TO JOIN US ON 1581 00:52:35,480 --> 00:52:37,520 VIDEO IF THEY WISHED, ON AUDIO 1582 00:52:37,520 --> 00:52:38,920 ONLY, THEY COULD PARTICIPATE BY 1583 00:52:38,920 --> 00:52:40,680 CHAT IN OUR ZOOM BOX. 1584 00:52:40,680 --> 00:52:42,160 THEY WERE ALSO FREE TO SUBMIT 1585 00:52:42,160 --> 00:52:43,560 WRITTEN COMMENTS BY EMAIL. 1586 00:52:43,560 --> 00:52:46,800 WE HEARD SOME REALLY INTERESTING 1587 00:52:46,800 --> 00:52:47,760 PERSPECTIVES FROM THE YOUNG 1588 00:52:47,760 --> 00:52:49,880 ADULTS ON THE AUTISM SPECTRUM. 1589 00:52:49,880 --> 00:52:51,520 IT WAS VERY VALUABLE TO HEAR 1590 00:52:51,520 --> 00:52:52,640 FROM THEM IN THEIR OWN VOICES, 1591 00:52:52,640 --> 00:52:54,120 AND I WOULD LIKE TO SHARE JUST A 1592 00:52:54,120 --> 00:52:55,720 COUPLE OF THE THINGS THAT WE 1593 00:52:55,720 --> 00:52:56,840 HEARD FROM THEM TODAY. 1594 00:52:56,840 --> 00:52:58,720 ONE YOUNG ADULT SAID, "I FEEL 1595 00:52:58,720 --> 00:53:00,560 LIKE I FACE ADDITIONAL 1596 00:53:00,560 --> 00:53:01,640 CHALLENGES RELATED TO MY 1597 00:53:01,640 --> 00:53:03,960 POSITION IN MY SOCIETY BECAUSE 1598 00:53:03,960 --> 00:53:05,160 NOT EVERYBODY KNOWS HOW TO 1599 00:53:05,160 --> 00:53:06,640 COMMUNICATE WITH ME, AND I 1600 00:53:06,640 --> 00:53:09,440 CANNOT GET WHAT I NEED." 1601 00:53:09,440 --> 00:53:11,760 ANOTHER YOUNG ADULT SAID, "I'VE 1602 00:53:11,760 --> 00:53:12,600 WORKED WITH SOME PROGRAMS THAT 1603 00:53:12,600 --> 00:53:14,080 HAVE REALLY HELPED ME GAIN 1604 00:53:14,080 --> 00:53:16,640 COURAGE WHILE IN THE JOB 1605 00:53:16,640 --> 00:53:17,040 MARKET." 1606 00:53:17,040 --> 00:53:18,760 ANOTHER SAID, "PEOPLE WITH 1607 00:53:18,760 --> 00:53:20,400 AUTISM ARE ALSO ABLE TO MAKE 1608 00:53:20,400 --> 00:53:22,000 GOOD MANAGERS AND LEADERS AS 1609 00:53:22,000 --> 00:53:23,600 LONG AS YOU ACCEPT YOURSELF, 1610 00:53:23,600 --> 00:53:25,400 SURROUND YOURSELF WITH A GOOD 1611 00:53:25,400 --> 00:53:26,800 SUPPORTIVE SYSTEM, AND KEEP 1612 00:53:26,800 --> 00:53:28,800 GOING TOWARDS YOUR DREAMS." 1613 00:53:28,800 --> 00:53:31,120 AND FINALLY, A FOURTH QUOTE I'D 1614 00:53:31,120 --> 00:53:32,360 LIKE TO SHARE. 1615 00:53:32,360 --> 00:53:34,440 ONE YOUNG ADULT TOLD US, "I 1616 00:53:34,440 --> 00:53:36,880 ENJOY WORKING WITH OTHERS WHO 1617 00:53:36,880 --> 00:53:37,800 ARE NEURODIVERGENT, BECAUSE I 1618 00:53:37,800 --> 00:53:39,520 WOULD NEVER BE AS CONFIDENT OR 1619 00:53:39,520 --> 00:53:42,480 SUCCESSFUL IF IT WASN'T FOR 1620 00:53:42,480 --> 00:53:43,720 OLDER NEURODIVERGENT WORKERS WHO 1621 00:53:43,720 --> 00:53:45,040 TOOK ME UNDER THEIR WING AND 1622 00:53:45,040 --> 00:53:47,480 SHOWED ME IT WAS POSSIBLE." 1623 00:53:47,480 --> 00:53:50,160 I'LL NOTE WE ALSO HAD -- WHILE 1624 00:53:50,160 --> 00:53:51,880 THESE QUOTES ARE FROM THE YOUNG 1625 00:53:51,880 --> 00:53:53,040 ADULTS ON THE AUTISM SPECTRUM, 1626 00:53:53,040 --> 00:53:54,840 WE ALSO HAD LISTENING SESSION 1627 00:53:54,840 --> 00:53:55,440 WITH PROFESSIONALS WHO WORKED 1628 00:53:55,440 --> 00:53:56,640 WITH THEM OR WHO WORK ON THIS 1629 00:53:56,640 --> 00:53:57,280 TOPIC. 1630 00:53:57,280 --> 00:53:59,040 WE HELD FIVE SESSIONS AROUND THE 1631 00:53:59,040 --> 00:54:00,640 SAME TIME IN SPRING 2022. 1632 00:54:00,640 --> 00:54:02,400 WE SPOKE WITH ADVOCATES, WITH 1633 00:54:02,400 --> 00:54:04,280 FEDERAL AND STATE POLICY MAKERS, 1634 00:54:04,280 --> 00:54:06,000 WITH SERVICE PROVIDERS, 1635 00:54:06,000 --> 00:54:07,600 EDUCATORS, AND RESEARCHERS. 1636 00:54:07,600 --> 00:54:12,280 AND WE TRIED TO GET A BROAD 1637 00:54:12,280 --> 00:54:13,680 SWATH OF PEOPLE FROM ACROSS THE 1638 00:54:13,680 --> 00:54:14,000 UNITED STATES. 1639 00:54:14,000 --> 00:54:15,280 I WILL MENTION THAT THESE 1640 00:54:15,280 --> 00:54:16,480 LISTENING SESSIONS WERE 1641 00:54:16,480 --> 00:54:20,320 INCREDIBLY INFORMATIVE, AND I 1642 00:54:20,320 --> 00:54:24,440 THINK SO GREAT TO HAVE THE 1643 00:54:24,440 --> 00:54:25,040 PARTICIPATION OF OTHERS THAN 1644 00:54:25,040 --> 00:54:28,280 JUST RESEARCHERS ON THIS TOPIC 1645 00:54:28,280 --> 00:54:29,560 TO INFORM THE REST OF OUR 1646 00:54:29,560 --> 00:54:31,320 PROJECT ACTIVITIES. 1647 00:54:31,320 --> 00:54:32,800 I WILL NOTE THAT IT'S STILL A 1648 00:54:32,800 --> 00:54:34,960 SMALL NUMBER OF PEOPLE. 1649 00:54:34,960 --> 00:54:37,680 IN TOTAL, WE HAD LESS THAN 200 1650 00:54:37,680 --> 00:54:39,040 PEOPLE PARTICIPATING IN THESE 1651 00:54:39,040 --> 00:54:43,360 LISTENING SESSIONS, SO NATURALLY 1652 00:54:43,360 --> 00:54:45,520 WHAT WE IDENTIFIED AND WHAT WE 1653 00:54:45,520 --> 00:54:47,040 HEARD MAY NOT BE REPRESENTATIVE 1654 00:54:47,040 --> 00:54:49,280 OF ALL YOUNG ADULTS ON THE 1655 00:54:49,280 --> 00:54:50,400 AUTISM SPECTRUM NOR ALL THE 1656 00:54:50,400 --> 00:54:54,320 STAKEHOLDER IN THIS SPACE. 1657 00:54:54,320 --> 00:54:56,000 SO LOOKING ACROSS ALL OF THE 1658 00:54:56,000 --> 00:54:57,360 INPUT THAT WE RECEIVED FROM 1659 00:54:57,360 --> 00:54:59,080 YOUNG ADULTS AS WELL AS 1660 00:54:59,080 --> 00:55:00,320 STAKEHOLDERS, WE IDENTIFIED A 1661 00:55:00,320 --> 00:55:03,600 COUPLE OF THEMES IN WHAT WE 1662 00:55:03,600 --> 00:55:04,000 HEARD. 1663 00:55:04,000 --> 00:55:05,240 SO WE IDENTIFIED SOME THINGS 1664 00:55:05,240 --> 00:55:07,200 THAT WERE MENTIONED AS BARRIERS 1665 00:55:07,200 --> 00:55:07,920 TO EMPLOYMENT AND SOME THINGS 1666 00:55:07,920 --> 00:55:09,480 THAT WERE MENTIONED AS 1667 00:55:09,480 --> 00:55:12,400 FACILITATORS TO EMPLOYMENT. 1668 00:55:12,400 --> 00:55:13,440 THEY'RE ON THE SCREEN NOW, BUT I 1669 00:55:13,440 --> 00:55:17,160 WILL GO THROUGH THEM AS WELL. 1670 00:55:17,160 --> 00:55:19,600 YOUNG ADULTS OFTEN MENTION 1671 00:55:19,600 --> 00:55:21,080 CHALLENGES IN JOB SEARCH AND 1672 00:55:21,080 --> 00:55:22,880 FINDING A GOOD WORK ENVIRONMENT. 1673 00:55:22,880 --> 00:55:24,560 THEY ALSO MENTION BIASES IN 1674 00:55:24,560 --> 00:55:25,600 TYPICAL RECRUITMENT AND 1675 00:55:25,600 --> 00:55:26,520 INTERVIEW PROCESSES. 1676 00:55:26,520 --> 00:55:28,120 FOR EXAMPLE, SOME MENTIONED THAT 1677 00:55:28,120 --> 00:55:31,760 A TYPICAL INTERVIEW PROCESS 1678 00:55:31,760 --> 00:55:33,160 MIGHT, FOR EXAMPLE, REWARD 1679 00:55:33,160 --> 00:55:36,600 CANDIDATES FOR BEING VERY 1680 00:55:36,600 --> 00:55:37,520 EXPRESSIVE FOR ANSWERING 1681 00:55:37,520 --> 00:55:39,200 QUESTIONS ON THE SPOT, AND MIGHT 1682 00:55:39,200 --> 00:55:40,840 HAVE BEHAVIORAL INTERVIEWING 1683 00:55:40,840 --> 00:55:42,200 PROCESSES THAT MIGHT 1684 00:55:42,200 --> 00:55:43,080 DISADVANTAGE YOUNG ADULTS ON THE 1685 00:55:43,080 --> 00:55:45,600 AUTISM SPECTRUM WHO ARE VERY 1686 00:55:45,600 --> 00:55:48,680 QUALIFIED FOR THE JOB, AND SO 1687 00:55:48,680 --> 00:55:52,520 THEY ENCOURAGED MORE INCLUSIVE 1688 00:55:52,520 --> 00:55:54,200 RECRUITMENT, HIRING AND WORK 1689 00:55:54,200 --> 00:55:55,520 ENVIRONMENTS THAT WOULD BE MORE 1690 00:55:55,520 --> 00:55:56,640 FOCUSED ON THE ABILITY TO 1691 00:55:56,640 --> 00:55:58,640 COMPLETE THE TASK AT HAND RATHER 1692 00:55:58,640 --> 00:55:59,960 THAN BEHAVIORAL INTERVIEWING, 1693 00:55:59,960 --> 00:56:02,480 FOR EXAMPLE. 1694 00:56:02,480 --> 00:56:03,600 STAKEHOLDERS AS WELL AS YOUNG 1695 00:56:03,600 --> 00:56:04,800 ADULTS MENTIONED A NEED FOR 1696 00:56:04,800 --> 00:56:06,160 GREATER AND MORE ENHANCED 1697 00:56:06,160 --> 00:56:07,880 SUPPORTS AND SERVICES, SO AS 1698 00:56:07,880 --> 00:56:09,680 JUST ONE EXAMPLE, ADDRESSING 1699 00:56:09,680 --> 00:56:10,680 TRANSPORTATION BARRIERS THAT 1700 00:56:10,680 --> 00:56:12,200 PEOPLE MIGHT HAVE IN GETTING TO 1701 00:56:12,200 --> 00:56:14,320 AND FROM A SERVICE PROVIDER OR 1702 00:56:14,320 --> 00:56:16,800 GETTING TO AND FROM WORK. 1703 00:56:16,800 --> 00:56:18,320 THEY ALSO MENTIONED A NEED FOR 1704 00:56:18,320 --> 00:56:20,920 MORE SELF-ADVOCACY AND CAREER 1705 00:56:20,920 --> 00:56:22,000 ADVANCEMENT TRAINING, SO NOT 1706 00:56:22,000 --> 00:56:25,480 ONLY FOCUSED ON HOW TO GET A JOB 1707 00:56:25,480 --> 00:56:27,080 BUT HOW TO PROGRESS IN ONE'S 1708 00:56:27,080 --> 00:56:30,040 CAREER AS WELL. 1709 00:56:30,040 --> 00:56:31,360 AND VERY RESONANT WITH WHAT WE 1710 00:56:31,360 --> 00:56:33,760 FOUND IN THE LITERATURE REVIEW, 1711 00:56:33,760 --> 00:56:35,280 MANY STAKEHOLDERS MENTIONED 1712 00:56:35,280 --> 00:56:37,200 CHALLENGES WITH GENERALIZING AND 1713 00:56:37,200 --> 00:56:40,200 SCALING SERVICES BEYOND A SINGLE 1714 00:56:40,200 --> 00:56:42,000 COMMUNITY-BASED PILOT PROGRAM. 1715 00:56:42,000 --> 00:56:44,720 WE ALSO HEARD MANY POSITIVES 1716 00:56:44,720 --> 00:56:47,480 ABOUT FACILITATORS TO 1717 00:56:47,480 --> 00:56:48,840 EMPLOYMENT, SO YOUNG ADULTS AND 1718 00:56:48,840 --> 00:56:50,000 THEIR FAMILY MEMBERS OFTEN 1719 00:56:50,000 --> 00:56:52,000 TALKED ABOUT ENCOURAGEMENT AND 1720 00:56:52,000 --> 00:56:52,960 ADVICE FROM THEIR SUPPORT 1721 00:56:52,960 --> 00:56:54,400 NETWORK THAT MIGHT INCLUDE 1722 00:56:54,400 --> 00:56:57,080 FAMILY, FRIENDS, STAFF FROM JOB 1723 00:56:57,080 --> 00:56:58,680 READINESS PROGRAMS, AND HOW 1724 00:56:58,680 --> 00:57:00,280 HELPFUL THAT ENCOURAGEMENT AND 1725 00:57:00,280 --> 00:57:01,920 ADVICE WAS TO HELP THEM KEEP 1726 00:57:01,920 --> 00:57:02,880 GOING ON THEIR EMPLOYMENT 1727 00:57:02,880 --> 00:57:09,280 JOURNEY. 1728 00:57:09,280 --> 00:57:10,840 PAID INTERNSHIPS, CUSTOMIZED 1729 00:57:10,840 --> 00:57:12,520 EMPLOYMENT WERE ALL PERCEIVED AS 1730 00:57:12,520 --> 00:57:13,960 VERY HELPFUL BY BOTH YOUNG YOUNG 1731 00:57:13,960 --> 00:57:15,360 ADULTS AND STAKEHOLDERS IN THIS 1732 00:57:15,360 --> 00:57:15,960 SPACE. 1733 00:57:15,960 --> 00:57:17,800 I MENTIONED ALREADY THE CULTURAL 1734 00:57:17,800 --> 00:57:20,120 SHIFTS AND TRAINING FOR 1735 00:57:20,120 --> 00:57:23,840 EMPLOYERS IN ORDER TO HELP BUILD 1736 00:57:23,840 --> 00:57:25,760 AND MAINTAIN MORE INCLUSIVE WORK 1737 00:57:25,760 --> 00:57:28,040 ENVIRONMENTS AND HIRING 1738 00:57:28,040 --> 00:57:28,280 PRACTICES. 1739 00:57:28,280 --> 00:57:30,160 THERE ARE FACILITATORS TO 1740 00:57:30,160 --> 00:57:31,920 EMPLOYMENT IN TERMS OF MORE 1741 00:57:31,920 --> 00:57:32,760 COLLABORATION AND THE FUNDING 1742 00:57:32,760 --> 00:57:36,160 FOR THE NEEDED SUPPORTS. 1743 00:57:36,160 --> 00:57:37,880 ONE SUGGESTION WAS PARTNERING 1744 00:57:37,880 --> 00:57:39,320 WITH NEURODIVERGENT CONSULTANTS 1745 00:57:39,320 --> 00:57:41,000 OR CAREER COACHES WITH 1746 00:57:41,000 --> 00:57:42,560 DISABILITIES, WHICH REALLY 1747 00:57:42,560 --> 00:57:43,720 RESONATES WITH THE QUOTE THAT I 1748 00:57:43,720 --> 00:57:45,280 MENTIONED EARLIER ABOUT HAVING 1749 00:57:45,280 --> 00:57:51,320 THE ROLE MODELS AND MENTORSHIP 1750 00:57:51,320 --> 00:57:52,480 FROM OTHER NEURODIVERGENT SENIOR 1751 00:57:52,480 --> 00:57:52,840 FOLKS. 1752 00:57:52,840 --> 00:57:53,880 AND COORDINATION WITH MORE LARGE 1753 00:57:53,880 --> 00:57:55,360 AND ESTABLISHED PROGRAMS WAS 1754 00:57:55,360 --> 00:57:57,200 ALSO MENTIONED AS A FACILITATOR 1755 00:57:57,200 --> 00:58:03,360 TO EMPLOYMENT. 1756 00:58:03,360 --> 00:58:04,120 ALL RIGHT. 1757 00:58:04,120 --> 00:58:05,360 SO LET'S SWITCH NOW TO TALKING 1758 00:58:05,360 --> 00:58:05,720 ABOUT DATA. 1759 00:58:05,720 --> 00:58:09,160 ONE OF THE EXERCISES THAT I 1760 00:58:09,160 --> 00:58:10,040 PERSONALLY FOUND TO BE VERY 1761 00:58:10,040 --> 00:58:11,440 USEFUL AS PART OF THE REYAAS 1762 00:58:11,440 --> 00:58:14,400 PROJECT WAS CONDUCTING THIS SCAN 1763 00:58:14,400 --> 00:58:17,360 AND INVENTORY OF EXISTING DATA. 1764 00:58:17,360 --> 00:58:20,560 ODEP WANTED TO KNOW WHAT DATA 1765 00:58:20,560 --> 00:58:21,920 SOURCES EXIST TO SUPPORT 1766 00:58:21,920 --> 00:58:24,520 RESEARCH ON THIS TOPIC. 1767 00:58:24,520 --> 00:58:27,640 THE MOTIVATION FOR THIS IS 1768 00:58:27,640 --> 00:58:29,400 SELF-EVIDENT IN SOME WAYS ON 1769 00:58:29,400 --> 00:58:30,760 QUALITY DATA ARE CRUCIAL FOR US 1770 00:58:30,760 --> 00:58:34,080 TO RIGOROUSLY UNDERSTAND WHAT 1771 00:58:34,080 --> 00:58:36,880 THE NEEDS, BARRIERS AND 1772 00:58:36,880 --> 00:58:37,680 FACILITATORS OF EMPLOYMENT ARE 1773 00:58:37,680 --> 00:58:39,520 FOR YOUNG AUTISTIC PEOPLE AND TO 1774 00:58:39,520 --> 00:58:41,120 BUILD MORE EVIDENCE ON WHAT CAN 1775 00:58:41,120 --> 00:58:43,840 HELP SUPPORT THESE OUTCOMES. 1776 00:58:43,840 --> 00:58:45,800 SO TO SUPPORT THIS GOAL, WE 1777 00:58:45,800 --> 00:58:48,160 SCANNED EXISTING SURVEY AND 1778 00:58:48,160 --> 00:58:50,280 ADMINISTRATIVE DATA SOURCES TO 1779 00:58:50,280 --> 00:58:52,560 IDENTIFY A SUBSET OF SOURCES 1780 00:58:52,560 --> 00:58:54,360 THAT MET CERTAIN ELIGIBILITY 1781 00:58:54,360 --> 00:58:54,920 CRITERIA. 1782 00:58:54,920 --> 00:58:57,280 SO THE DATA SOURCE HAD TO 1783 00:58:57,280 --> 00:58:58,880 INCLUDE YOUNG ADULTS IN THE AGE 1784 00:58:58,880 --> 00:59:01,200 RANGE THAT WE'RE FOCUSED ON, SO 1785 00:59:01,200 --> 00:59:02,840 16 TO 28, AS THIS IS THE CRUCIAL 1786 00:59:02,840 --> 00:59:04,400 TIME OF TRANSITIONING TO 1787 00:59:04,400 --> 00:59:05,640 EMPLOYMENT. 1788 00:59:05,640 --> 00:59:08,040 IT HAD TO CONTAIN INFORMATION 1789 00:59:08,040 --> 00:59:09,920 THAT WOULD ALLOW US TO IDENTIFY 1790 00:59:09,920 --> 00:59:11,320 INDIVIDUALS ON THE AUTISM 1791 00:59:11,320 --> 00:59:14,080 SPECTRUM, AND IT HAD TO CONTAIN 1792 00:59:14,080 --> 00:59:18,960 EMPLOYMENT-RELATED MEASURES. 1793 00:59:18,960 --> 00:59:21,160 WE IDENTIFIED 11 SUCH DATA 1794 00:59:21,160 --> 00:59:25,080 SOURCES, AND THIS IS -- THIS 1795 00:59:25,080 --> 00:59:26,280 DATA INVENTORY IS ONLINE AND I 1796 00:59:26,280 --> 00:59:27,720 WILL POST A LINK TO IT IN THE 1797 00:59:27,720 --> 00:59:31,960 CHAT IN A MINUTE. 1798 00:59:31,960 --> 00:59:33,600 SO AS I MENTIONED, 11 DIFFERENT 1799 00:59:33,600 --> 00:59:36,160 DATA SOURCES, AND THEY HAVE EACH 1800 00:59:36,160 --> 00:59:37,480 DIFFERENT STRENGTHS AND 1801 00:59:37,480 --> 00:59:38,840 LIMITATIONS IN OUR DATA 1802 00:59:38,840 --> 00:59:40,160 INVENTORY DOCUMENT, WE PROVIDED 1803 00:59:40,160 --> 00:59:42,040 MORE DETAILS ON THINGS LIKE THE 1804 00:59:42,040 --> 00:59:43,360 UNIVERSE OF PEOPLE WHO ARE 1805 00:59:43,360 --> 00:59:45,360 CAPTURED IN THIS DATASET, THE 1806 00:59:45,360 --> 00:59:47,240 SAMPLE SIZES THAT YOU CAN 1807 00:59:47,240 --> 00:59:49,440 EXPECT, HOW YOU CAN ACCESS THESE 1808 00:59:49,440 --> 00:59:49,920 DATA, ET CETERA. 1809 00:59:49,920 --> 00:59:51,920 SO I WON'T GO INTO THE DETAILS 1810 00:59:51,920 --> 00:59:53,120 OF EACH AND EVERY DATA SOURCE, 1811 00:59:53,120 --> 00:59:55,120 BUT I WILL PROVIDE AN OVERVIEW 1812 00:59:55,120 --> 00:59:57,320 OF WHAT WE'VE LEARNED LOOKING 1813 00:59:57,320 --> 00:59:59,560 ACROSS THESE 11 DATA SOURCES. 1814 00:59:59,560 --> 01:00:02,280 SO ONE THING WE NOTICED WAS THAT 1815 01:00:02,280 --> 01:00:03,000 UNFORTUNATELY, MANY OF THESE 1816 01:00:03,000 --> 01:00:04,600 DATA SOURCES HAVE SMALL SAMPLE 1817 01:00:04,600 --> 01:00:06,640 SIZES OF PEOPLE ON THE AUTISM 1818 01:00:06,640 --> 01:00:07,360 SPECTRUM. 1819 01:00:07,360 --> 01:00:09,200 AND THAT'S BECAUSE THERE WAS NO 1820 01:00:09,200 --> 01:00:11,320 SINGLE DATA SOURCE THAT'S 1821 01:00:11,320 --> 01:00:13,440 FOCUSED ENTIRELY ON YOUNG ADULTS 1822 01:00:13,440 --> 01:00:14,680 ON THE AUTISM SPECTRUM. 1823 01:00:14,680 --> 01:00:16,560 SO IT WAS ALWAYS A SUBSET OF THE 1824 01:00:16,560 --> 01:00:17,880 FOLKS WHO ARE CAPTURED IN THE 1825 01:00:17,880 --> 01:00:20,040 DATASET. 1826 01:00:20,040 --> 01:00:22,240 THERE WERE A FEW EXCEPTIONS, OF 1827 01:00:22,240 --> 01:00:22,520 COURSE. 1828 01:00:22,520 --> 01:00:25,040 THEY TENDED TO BE LARGER AND 1829 01:00:25,040 --> 01:00:26,000 ADMINISTRATIVE DATASETS. 1830 01:00:26,000 --> 01:00:30,160 SO AS JUST ONE EXAMPLE, SOCIAL 1831 01:00:30,160 --> 01:00:31,960 SECURITY ADMINISTRATION'S 1832 01:00:31,960 --> 01:00:34,000 BENEFIT DATA WOULD CONTAIN 1833 01:00:34,000 --> 01:00:36,160 INFORMATION ON EVERYONE WHO 1834 01:00:36,160 --> 01:00:37,920 RECEIVES SUPPLEMENTAL SECURITY 1835 01:00:37,920 --> 01:00:40,720 INCOMES SSI, OR SUPPLEMENTAL 1836 01:00:40,720 --> 01:00:42,760 SECURITY -- SORRY -- SOCIAL 1837 01:00:42,760 --> 01:00:44,000 SECURITY DISABILITY INSURANCE, 1838 01:00:44,000 --> 01:00:45,360 SSDI, BUT OF COURSE PEOPLE WHO 1839 01:00:45,360 --> 01:00:47,560 RECEIVE SUCH BENEFITS ARE A 1840 01:00:47,560 --> 01:00:49,200 SUBSET OF ALL YOUNG ADULT ON THE 1841 01:00:49,200 --> 01:00:53,080 AUTISM SPECTRUM, SO THESE 1842 01:00:53,080 --> 01:00:54,720 DATASETS ARE TYPICALLY NOT 1843 01:00:54,720 --> 01:00:56,160 REPRESENTATIVE OF ALL AUTISTIC 1844 01:00:56,160 --> 01:00:56,400 PEOPLE. 1845 01:00:56,400 --> 01:00:57,760 AS JUST ONE EXAMPLE, IF YOU HAD 1846 01:00:57,760 --> 01:01:01,640 ACCESS TO THE SSI BENEFITS FILE, 1847 01:01:01,640 --> 01:01:03,000 SSI IS A MEANS-TESTED BENEFIT 1848 01:01:03,000 --> 01:01:04,840 THAT IS FOCUSED ON PEOPLE WITH 1849 01:01:04,840 --> 01:01:06,600 LOW INCOMES, AND SO YOU WOULD 1850 01:01:06,600 --> 01:01:10,640 NOT BE CAPTURING THE FULL 1851 01:01:10,640 --> 01:01:12,240 SOCIOECONOMIC DISTRIBUTION OF 1852 01:01:12,240 --> 01:01:14,640 YOUNG AUTISTIC PEOPLE. 1853 01:01:14,640 --> 01:01:15,760 I'LL ALSO NOTE THAT ACCESS TO 1854 01:01:15,760 --> 01:01:17,280 MANY OF THESE DATASETS IS 1855 01:01:17,280 --> 01:01:17,600 RESTRICTED. 1856 01:01:17,600 --> 01:01:20,120 SEVERAL OF THEM WERE 1857 01:01:20,120 --> 01:01:20,800 ADMINISTRATIVE DATASETS FROM 1858 01:01:20,800 --> 01:01:22,840 GOVERNMENT AGENCIES THAT YOU 1859 01:01:22,840 --> 01:01:24,080 WOULD NEED SPECIAL PRIVILEGES TO 1860 01:01:24,080 --> 01:01:26,480 BE ABLE TO ACCESS, AND OTHER 1861 01:01:26,480 --> 01:01:27,920 DATASETS AT A MINIMUM WOULD 1862 01:01:27,920 --> 01:01:29,760 REQUIRE AN APPLICATION AND A 1863 01:01:29,760 --> 01:01:30,680 VETTING PROCEDURE IN ORDER TO 1864 01:01:30,680 --> 01:01:32,480 GET TO. 1865 01:01:32,480 --> 01:01:35,200 MOST OF THESE DATASETS ALSO 1866 01:01:35,200 --> 01:01:36,880 CONTAINED LIMITED EMPLOYMENT 1867 01:01:36,880 --> 01:01:38,600 INFORMATION, SO THEY WOULD OFTEN 1868 01:01:38,600 --> 01:01:41,280 HAVE AN INDICATOR FOR WHETHER OR 1869 01:01:41,280 --> 01:01:43,680 NOT SOMEONE IS EMPLOYED. 1870 01:01:43,680 --> 01:01:44,560 THEY MIGHT CONTAIN INFORMATION 1871 01:01:44,560 --> 01:01:47,000 ON EARNINGS OR HOURS WORKED, BUT 1872 01:01:47,000 --> 01:01:50,080 THEY RARELY CONTAINED MORE 1873 01:01:50,080 --> 01:01:50,680 NUANCED INFORMATION ABOUT THE 1874 01:01:50,680 --> 01:01:53,280 EMPLOYMENT EXPERIENCE. 1875 01:01:53,280 --> 01:01:56,080 SO AS AN EXAMPLE, THEY RARELY 1876 01:01:56,080 --> 01:01:58,080 CONTAIN INFORMATION ON THINGS 1877 01:01:58,080 --> 01:01:58,920 LIKE THE OCCUPATION IN WHICH 1878 01:01:58,920 --> 01:02:00,200 SOMEONE WORKED, THE INDUSTRY IN 1879 01:02:00,200 --> 01:02:03,600 WHICH THEY WORKED, JOB QUALITY 1880 01:02:03,600 --> 01:02:04,840 MEASURES, FOR EXAMPLE, DO THEY 1881 01:02:04,840 --> 01:02:06,520 HAVE ACCESS TO HEALTH INSURANCE 1882 01:02:06,520 --> 01:02:07,640 THROUGH THEIR EMPLOYER, DO THEY 1883 01:02:07,640 --> 01:02:11,200 HAVE ACCESS TO PAID SICK LEAVE, 1884 01:02:11,200 --> 01:02:12,640 THOSE KINDS OF INFORMATION ARE 1885 01:02:12,640 --> 01:02:15,720 TYPICALLY NOT AVAILABLE. 1886 01:02:15,720 --> 01:02:16,920 THERE'S ALSO LITTLE INFORMATION 1887 01:02:16,920 --> 01:02:19,840 ON EMPLOYER ACCOMMODATIONS OR 1888 01:02:19,840 --> 01:02:24,320 WHAT SUPPORT NEEDS ARE EITHER 1889 01:02:24,320 --> 01:02:26,200 HELPING PEOPLE WITH EMPLOYMENT 1890 01:02:26,200 --> 01:02:32,440 OR ARE U UNMET SUPPORT NEEDS THT 1891 01:02:32,440 --> 01:02:33,800 PEOPLE WOULD BE ABLE TO HELP 1892 01:02:33,800 --> 01:02:35,240 THEM WITH EMPLOYMENT. 1893 01:02:35,240 --> 01:02:36,240 THEY DO CONTAIN OTHER 1894 01:02:36,240 --> 01:02:38,240 INFORMATION RELATIVE TO 1895 01:02:38,240 --> 01:02:39,640 EMPLOYMENT, FOR EXAMPLE, THEY 1896 01:02:39,640 --> 01:02:40,720 MIGHT CONTAIN HEALTH MEASURES 1897 01:02:40,720 --> 01:02:41,920 WHICH OF COURSE INFLUENCES 1898 01:02:41,920 --> 01:02:42,640 EMPLOYMENT, OPPORTUNITIES AND 1899 01:02:42,640 --> 01:02:43,040 CONSTRAINTS. 1900 01:02:43,040 --> 01:02:44,560 THEY ALSO OFTEN TYPICALLY 1901 01:02:44,560 --> 01:02:46,760 CONTAIN DEMOGRAPHIC INFORMATION, 1902 01:02:46,760 --> 01:02:48,840 WHICH WOULD ALLOW RESEARCHERS TO 1903 01:02:48,840 --> 01:02:51,200 CONDUCT, AS AN EXAMPLE, A 1904 01:02:51,200 --> 01:02:53,080 SUBGROUP ANALYSIS OR A DEEPER 1905 01:02:53,080 --> 01:02:54,600 DIVE INTO DISPARITIES IN 1906 01:02:54,600 --> 01:02:57,640 EMPLOYMENT OUTCOMES OR 1907 01:02:57,640 --> 01:02:58,000 EXPERIENCES. 1908 01:02:58,000 --> 01:02:59,680 HAVING SAID THAT, LOOKING ACROSS 1909 01:02:59,680 --> 01:03:02,120 THESE DATASET, THERE REALLY WAS 1910 01:03:02,120 --> 01:03:05,480 NO ONE DATA SOURCE THAT WAS EVEN 1911 01:03:05,480 --> 01:03:11,920 CLOSE TO IDEAL FOR DIVING INTO 1912 01:03:11,920 --> 01:03:13,160 REPRESENTATIVE, RIGOROUS STUDY 1913 01:03:13,160 --> 01:03:13,880 OF EMPLOYMENT EXPERIENCE AND 1914 01:03:13,880 --> 01:03:14,520 THEN OUTCOMES. 1915 01:03:14,520 --> 01:03:17,520 SO THERE IS A NEED FOR MORE 1916 01:03:17,520 --> 01:03:19,720 LARGE SAMPLE REPRESENTATIVE DATA 1917 01:03:19,720 --> 01:03:21,440 ON YOUNG ADULTS ON THE AUTISM 1918 01:03:21,440 --> 01:03:23,440 SPECTRUM THAT'S REALLY FOCUSED 1919 01:03:23,440 --> 01:03:28,960 ON EMPLOYMENT AS A DOMAIN. 1920 01:03:28,960 --> 01:03:29,520 ALL RIGHT. 1921 01:03:29,520 --> 01:03:31,960 SO WE DID PICK FROM AMONG THESE 1922 01:03:31,960 --> 01:03:34,560 11 DATA SOURCES ONE DATASET TO 1923 01:03:34,560 --> 01:03:38,800 GET ACCESS TO AND TO DIVE INTO 1924 01:03:38,800 --> 01:03:40,440 TO ANSWER SOME RESEARCH 1925 01:03:40,440 --> 01:03:41,040 QUESTIONS. 1926 01:03:41,040 --> 01:03:44,520 THAT DATA SOURCE WAS FROM THE 1927 01:03:44,520 --> 01:03:45,040 REHABILITATION SERVICES 1928 01:03:45,040 --> 01:03:49,440 ADMINISTRATION, SO THIS IS THE 1929 01:03:49,440 --> 01:03:50,080 RSA-911 DATASET SOME OF YOU 1930 01:03:50,080 --> 01:03:51,840 MIGHT BE FAMILIAR WITH, IT 1931 01:03:51,840 --> 01:03:53,160 ESSENTIALLY CONTAINS CASE 1932 01:03:53,160 --> 01:03:54,680 SERVICE REPORT ON PEOPLE ENGAGED 1933 01:03:54,680 --> 01:03:55,840 WITH VOCATIONAL REHABILITATION 1934 01:03:55,840 --> 01:03:56,360 AGENCIES. 1935 01:03:56,360 --> 01:03:58,160 SO THESE ARE POPULATION DATA. 1936 01:03:58,160 --> 01:04:01,280 THEY COVER ALL 78 VR AGENCIES IN 1937 01:04:01,280 --> 01:04:03,960 THE UNITED STATES, AND THEY 1938 01:04:03,960 --> 01:04:05,360 CONTAIN ALL VR APPLICANTS. 1939 01:04:05,360 --> 01:04:07,040 IT'S A PRETTY LARGE SAMPLE SIZE 1940 01:04:07,040 --> 01:04:09,640 OF YOUNG PEOPLE ON THE AUTISM 1941 01:04:09,640 --> 01:04:09,920 SPECTRUM. 1942 01:04:09,920 --> 01:04:13,880 FOR EXAMPLE, BEING BETWEEN 2017 1943 01:04:13,880 --> 01:04:18,240 AND 2019, WE FOUND A LITTLE OVER 1944 01:04:18,240 --> 01:04:19,280 170,000 YOUNG PEOPLE ON THE 1945 01:04:19,280 --> 01:04:22,000 AUTISM SPECTRUM HAD APPLIED TO 1946 01:04:22,000 --> 01:04:22,560 VR. 1947 01:04:22,560 --> 01:04:23,960 THE DATA ARE PRETTY RECENT. 1948 01:04:23,960 --> 01:04:25,240 THEY ARE ANNUAL FILES AND 1949 01:04:25,240 --> 01:04:28,560 THEY'RE RELEASED EVERY YEAR. 1950 01:04:28,560 --> 01:04:30,480 DATA AS RECENT AS, I BELIEVE, 1951 01:04:30,480 --> 01:04:32,600 2021 ARE NOW AVAILABLE, AND 1952 01:04:32,600 --> 01:04:36,960 THESE DATA ARE RELATIVELY 1953 01:04:36,960 --> 01:04:37,680 STRAIGHTFORWARD TO ACCESS YOU DO 1954 01:04:37,680 --> 01:04:39,080 HAVE TO SUBMIT AN APPLICATION 1955 01:04:39,080 --> 01:04:43,560 AND GET VETTED, BUT MORE 1956 01:04:43,560 --> 01:04:45,000 STRAIGHTFORWARD THAN SOME OTHER 1957 01:04:45,000 --> 01:04:47,160 ADMINISTRATIVE DATA SOURCES IN 1958 01:04:47,160 --> 01:04:47,680 OUR INVENTORY. 1959 01:04:47,680 --> 01:04:49,360 THE SAMPLE WE ARE FOCUSED ON IS 1960 01:04:49,360 --> 01:04:51,920 YOUNG ADULTS WHO APPLIED FOR VR 1961 01:04:51,920 --> 01:04:52,320 SERVICES. 1962 01:04:52,320 --> 01:04:53,920 WE ARE FOCUSED AS I MENTIONED ON 1963 01:04:53,920 --> 01:04:57,560 THE AGE GROUP OF 16 TO 28 AT THE 1964 01:04:57,560 --> 01:04:59,680 TIME THEY APPLIED FOR VR, AND IN 1965 01:04:59,680 --> 01:05:01,800 ORDER TO IDENTIFY AUTISTIC YOUNG 1966 01:05:01,800 --> 01:05:05,200 ADULTS, WE FOCUSED ON THE SOURCE 1967 01:05:05,200 --> 01:05:06,880 OF PRIMARY OR SECONDARY 1968 01:05:06,880 --> 01:05:09,680 IMPAIRMENT THAT IS RECORDED IN 1969 01:05:09,680 --> 01:05:16,240 VR CASE RECORDS. 1970 01:05:16,240 --> 01:05:18,000 SO THESE ANALYSES ARE CURRENTLY 1971 01:05:18,000 --> 01:05:18,640 UNDER WAY. 1972 01:05:18,640 --> 01:05:20,440 SO UNFORTUNATELY I CAN'T SHARE 1973 01:05:20,440 --> 01:05:21,800 FINDINGS, BUT I WILL WALK US 1974 01:05:21,800 --> 01:05:23,320 THROUGH THE RESEARCH QUESTIONS 1975 01:05:23,320 --> 01:05:26,160 THAT WE ARE EXAMINING. 1976 01:05:26,160 --> 01:05:27,320 THE FIRST THING WE WANTED TO 1977 01:05:27,320 --> 01:05:30,760 UNDERSTAND IS THE PIPELINE INTO 1978 01:05:30,760 --> 01:05:32,360 VR FOR YOUNG PEOPLE ON THE 1979 01:05:32,360 --> 01:05:32,720 AUTISM SPECTRUM. 1980 01:05:32,720 --> 01:05:34,040 SO WE'RE LOOKING AT WHAT ARE THE 1981 01:05:34,040 --> 01:05:36,200 COMMON SOURCES OF REFERRAL TO VR 1982 01:05:36,200 --> 01:05:37,720 FOR YOUNG ADULTS ON THE AUTISM 1983 01:05:37,720 --> 01:05:38,160 SPECTRUM. 1984 01:05:38,160 --> 01:05:39,400 WE WANTED TO UNDERSTAND, FOR 1985 01:05:39,400 --> 01:05:42,200 EXAMPLE, WHAT IS THE ROLE THAT 1986 01:05:42,200 --> 01:05:45,480 SCHOOLS ARE PLAYING AS OPPOSED 1987 01:05:45,480 --> 01:05:46,520 TO PERHAPS SERVICE PROVIDERS, 1988 01:05:46,520 --> 01:05:49,880 FAMILY AND FRIENDS, PEOPLE 1989 01:05:49,880 --> 01:05:53,280 APPLYING BY THEMSELVES, DOL 1990 01:05:53,280 --> 01:05:55,880 PROGRAMS, ESSMENTS ET CETERA. 1991 01:05:55,880 --> 01:05:57,520 WE WANTED TO UNDERSTAND WHAT 1992 01:05:57,520 --> 01:05:58,640 AGENCIES AND CONNECTIONS ARE 1993 01:05:58,640 --> 01:06:00,560 REALLY IMPORTANT FOR CONNECTING 1994 01:06:00,560 --> 01:06:03,200 YOUNG PEOPLE TO VR AGENCIES. 1995 01:06:03,200 --> 01:06:05,440 WE ALSO WANTED TO UNDERSTAND WHO 1996 01:06:05,440 --> 01:06:07,200 IS APPLYING TO VR AGENCIES. 1997 01:06:07,200 --> 01:06:09,720 SO WHAT ARE THE CHARACTERISTICS 1998 01:06:09,720 --> 01:06:10,880 OF THE YOUNG ADULTS ON THE 1999 01:06:10,880 --> 01:06:15,080 AUTISM SPECTRUM WHO APPLY TO VR, 2000 01:06:15,080 --> 01:06:17,080 AND AT THE TIME THAT THE VR 2001 01:06:17,080 --> 01:06:18,640 COUNSELOR DEVELOPS SOMETHING 2002 01:06:18,640 --> 01:06:20,000 CALLED AN INDIVIDUALIZED PLAN 2003 01:06:20,000 --> 01:06:20,760 FOR EMPLOYMENT, WHICH IS 2004 01:06:20,760 --> 01:06:22,960 SOMETHING LIKE A SERVICE PLAN, 2005 01:06:22,960 --> 01:06:25,400 THE VR COUNSELOR OFTEN NOTES -- 2006 01:06:25,400 --> 01:06:27,080 I GET COMMONLY IDENTIFIED 2007 01:06:27,080 --> 01:06:27,880 BARRIERS TO EMPLOYMENT. 2008 01:06:27,880 --> 01:06:29,360 SO FOR EXAMPLE, WHETHER SOMEONE 2009 01:06:29,360 --> 01:06:31,600 IS AN ENGLISH LANGUAGE LEARNER 2010 01:06:31,600 --> 01:06:32,800 MIGHT BE SOMETHING THAT'S 2011 01:06:32,800 --> 01:06:33,720 RECORDED IN THEIR CASE FILE. 2012 01:06:33,720 --> 01:06:35,320 SO WE ALSO WANTED TO UNDERSTAND 2013 01:06:35,320 --> 01:06:37,680 WHAT ARE SOME OF THE COMMON 2014 01:06:37,680 --> 01:06:39,800 BARRIERS TO EMPLOYMENT THAT WE 2015 01:06:39,800 --> 01:06:41,760 SEE FOR YOUNG VR APPLICANTS ON 2016 01:06:41,760 --> 01:06:44,640 THE AUTISM SPECTRUM. 2017 01:06:44,640 --> 01:06:46,200 THEN WE WANTED TO UNDERSTAND 2018 01:06:46,200 --> 01:06:47,640 THEIR JOURNEY THROUGH THE VR 2019 01:06:47,640 --> 01:06:48,200 SYSTEM. 2020 01:06:48,200 --> 01:06:49,960 SO WE'RE INTERESTED IN THE TYPES 2021 01:06:49,960 --> 01:06:52,200 OF VR SERVICES THAT YOUNG ADULTS 2022 01:06:52,200 --> 01:06:54,040 ON THE AUTISM SPECTRUM ARE USING 2023 01:06:54,040 --> 01:06:57,040 ONCE THEY ENTER VR AGENCIES, AND 2024 01:06:57,040 --> 01:06:58,480 WE ALSO WANTED TO UNDERSTAND 2025 01:06:58,480 --> 01:07:00,120 WHAT THE OUTCOMES OF THESE VR 2026 01:07:00,120 --> 01:07:00,680 SERVICES ARE. 2027 01:07:00,680 --> 01:07:06,040 SO WE ARE LOOKING INTO THE 2028 01:07:06,040 --> 01:07:07,520 CHERYLS OF YOUNG ADULTS THAT 2029 01:07:07,520 --> 01:07:08,960 EXIT VR WITH EMPLOYMENT AND WHAT 2030 01:07:08,960 --> 01:07:10,080 TYPES OF EMPLOYMENT OUTCOMES 2031 01:07:10,080 --> 01:07:10,960 THEY MIGHT HAVE. 2032 01:07:10,960 --> 01:07:13,080 SO FOR EXAMPLE, WHETHER IT IS 2033 01:07:13,080 --> 01:07:13,640 COMPETITIVE INTEGRATED 2034 01:07:13,640 --> 01:07:14,360 EMPLOYMENT OR SUPPORTED 2035 01:07:14,360 --> 01:07:15,960 EMPLOYMENT, ET CETERA. 2036 01:07:15,960 --> 01:07:19,600 WE WANTED TO UNDERSTAND 2037 01:07:19,600 --> 01:07:20,840 VARIATION IN THESE EXPERIENCES 2038 01:07:20,840 --> 01:07:23,080 AND OUTCOMES, SO WE'RE GOING TO 2039 01:07:23,080 --> 01:07:26,320 BE LOOKING AT HOW PATTERNS PLAY 2040 01:07:26,320 --> 01:07:28,160 OUT IN THESE REFERRALS, 2041 01:07:28,160 --> 01:07:30,240 CHARACTERISTICS AND OUTCOMES IN 2042 01:07:30,240 --> 01:07:34,800 TERMS OF VARIATION ACROSS 2043 01:07:34,800 --> 01:07:38,360 STATES, SO GEOGRAPHIC, AS WELL 2044 01:07:38,360 --> 01:07:40,360 AS COMPARING YOUNG ADULTS ON THE 2045 01:07:40,360 --> 01:07:44,080 AUTISM SPECTRUM COMPARED TO 2046 01:07:44,080 --> 01:07:46,880 OTHERS INCLUDING INTELLECTUAL 2047 01:07:46,880 --> 01:07:48,560 DISABILITY AND ALL OTHER YOUNG 2048 01:07:48,560 --> 01:07:49,760 CLIENTS WITH VR DISABILITY. 2049 01:07:49,760 --> 01:07:51,640 WE ALSO WANTED TO UNDERSTAND 2050 01:07:51,640 --> 01:07:53,040 VARIATION WITHIN AUTISTIC YOUNG 2051 01:07:53,040 --> 01:07:54,920 ADULTS SO WE WILL BE LOOKING AT 2052 01:07:54,920 --> 01:07:57,480 PATTERNS AS THEY VARY ACROSS 2053 01:07:57,480 --> 01:07:58,560 AGE, SO YOUNGER CLIENTS, PERHAPS 2054 01:07:58,560 --> 01:08:02,480 THOSE WHO APPLY WHEN THEY'RE 18 2055 01:08:02,480 --> 01:08:07,560 TO 20 VERSUS 20 TO 28, VARIATION 2056 01:08:07,560 --> 01:08:10,320 IN SEX, SO MALES VERSUS FEMALES, 2057 01:08:10,320 --> 01:08:12,720 AND VARIATION BY RACE OR 2058 01:08:12,720 --> 01:08:13,400 ETHNICITY. 2059 01:08:13,400 --> 01:08:14,920 FINALLY, WE'RE CONNECTING SOME 2060 01:08:14,920 --> 01:08:17,560 VERY EXPLORATORY ANALYSES TO 2061 01:08:17,560 --> 01:08:21,240 LOOK INTO HOW THE COVID-19 2062 01:08:21,240 --> 01:08:23,680 PANDEMIC MIGHT HAVE CHANGED 2063 01:08:23,680 --> 01:08:23,920 THINGS. 2064 01:08:23,920 --> 01:08:25,520 SO WE'RE LOOKING TO SEE WHETHER 2065 01:08:25,520 --> 01:08:28,640 THE PATTERNS IN VR APPLICATIONS, 2066 01:08:28,640 --> 01:08:31,520 THE NUMBER OF YOUTH THAT GO FROM 2067 01:08:31,520 --> 01:08:34,080 FROM APPLYING TO VR TO ACTUALLY 2068 01:08:34,080 --> 01:08:35,360 RECEIVING SERVICES AND THE SHARE 2069 01:08:35,360 --> 01:08:37,720 THAT EXIT WITH EMPLOYMENT MIGHT 2070 01:08:37,720 --> 01:08:39,480 DIFFER IN THE PERIOD BEFORE THE 2071 01:08:39,480 --> 01:08:41,560 PANDEMIC VERSUS DURING THE 2072 01:08:41,560 --> 01:08:46,920 PANDEMIC IN 2020. 2073 01:08:46,920 --> 01:08:47,320 ALL RIGHT. 2074 01:08:47,320 --> 01:08:50,280 AS I MENTIONED, THOSE ANALYSES 2075 01:08:50,280 --> 01:08:51,200 ARE CURRENTLY UNDERWAY. 2076 01:08:51,200 --> 01:08:52,480 THE REPORT FROM THAT ANALYSIS 2077 01:08:52,480 --> 01:08:56,080 WILL BE AVAILABLE IN EARLY 2023, 2078 01:08:56,080 --> 01:08:57,560 SO I HOPE YOU ALL WILL LOOK OUT 2079 01:08:57,560 --> 01:08:59,000 FOR THAT. 2080 01:08:59,000 --> 01:09:00,240 WITH THAT, I WILL TURN THINGS 2081 01:09:00,240 --> 01:09:03,880 BACK TO PAUL. 2082 01:09:03,880 --> 01:09:05,680 >>THANK YOU, ANKITA. 2083 01:09:05,680 --> 01:09:07,960 SO WE'VE JUST GOT TWO QUICK 2084 01:09:07,960 --> 01:09:09,720 SLIDES LEFT IN WRAP-UP. 2085 01:09:09,720 --> 01:09:11,080 WE TOUCHED ON A FEW OF THESE. 2086 01:09:11,080 --> 01:09:12,600 I DON'T WANT TO BELABOR THIS 2087 01:09:12,600 --> 01:09:15,840 SLIDE, BUT TWO POINTS BEAR 2088 01:09:15,840 --> 01:09:16,920 REPEATING HERE. 2089 01:09:16,920 --> 01:09:20,720 IN THE WORLD OF SERVICES 2090 01:09:20,720 --> 01:09:22,680 RESEARCH, AND POLICY RESEARCH ON 2091 01:09:22,680 --> 01:09:26,000 AUTISM TO DATE, THERE'S VERY 2092 01:09:26,000 --> 01:09:27,080 INCONSISTENT AND INFREQUENT 2093 01:09:27,080 --> 01:09:29,880 ATTENTION TO ISSUES OF EQUITY 2094 01:09:29,880 --> 01:09:31,320 AND THE LIFE COURSE PERSPECTIVE. 2095 01:09:31,320 --> 01:09:32,960 AND AGAIN, THIS LIFE COURSE 2096 01:09:32,960 --> 01:09:35,360 PERSPECTIVE, WHICH IS SO PROM 2097 01:09:35,360 --> 01:09:39,760 NEBT IN DEVELOPROMINENT IN DEVEL 2098 01:09:39,760 --> 01:09:42,240 RESEARCH AND WHAT I TRAINED IN 2099 01:09:42,240 --> 01:09:43,680 AND THAT SO MANY CH YOU HAVE 2100 01:09:43,680 --> 01:09:45,280 PIONEERED REALLY IN YOUR 2101 01:09:45,280 --> 01:09:46,200 DEVELOPMENTAL RESEARCH ON 2102 01:09:46,200 --> 01:09:46,880 AUTISM. 2103 01:09:46,880 --> 01:09:49,120 THAT LIFE COURSE PERSPECTIVE IS 2104 01:09:49,120 --> 01:09:50,840 STILL NOT WELL INTEGRATED INTO 2105 01:09:50,840 --> 01:09:53,000 APPLIED WORK ON POLICY AND 2106 01:09:53,000 --> 01:09:54,920 PROGRAM IMPACT ANALYSIS. 2107 01:09:54,920 --> 01:09:56,680 SO THAT'S SOMETHING THAT WE'RE 2108 01:09:56,680 --> 01:09:59,800 EAGER TO CHAMPION, IS HOW TO 2109 01:09:59,800 --> 01:10:01,560 REALLY INTEGRATE AND UNIFY A 2110 01:10:01,560 --> 01:10:02,640 LIFE COURSE DEVELOPMENTAL 2111 01:10:02,640 --> 01:10:05,400 PERSPECTIVE WITH AN INTERVENTION 2112 01:10:05,400 --> 01:10:07,000 IN POLICY RESEARCH PERSPECTIVE. 2113 01:10:07,000 --> 01:10:11,480 AND THEN THERE REMAINS KIND OF A 2114 01:10:11,480 --> 01:10:14,920 LACK OF ACKNOWLEDGMENT AND 2115 01:10:14,920 --> 01:10:17,080 UNDERSTANDING AND REALLY A 2116 01:10:17,080 --> 01:10:19,200 METHODOLOGICAL APPROACH FOR 2117 01:10:19,200 --> 01:10:20,480 UNDERSTANDING THE COMPLEXITY OF 2118 01:10:20,480 --> 01:10:23,080 THE SERVICE ECOSYSTEM EXPERIENCE 2119 01:10:23,080 --> 01:10:24,920 THAT MANY AUTISTIC PEOPLE AND 2120 01:10:24,920 --> 01:10:26,320 THEIR FAMILIES HAVE TO NAVIGATE. 2121 01:10:26,320 --> 01:10:28,400 SO YOU KNOW, AUTISM HARDLY EVER 2122 01:10:28,400 --> 01:10:30,880 COMES BY ITSELF. 2123 01:10:30,880 --> 01:10:31,880 MOST PEOPLE ON THE SPECTRUM ALSO 2124 01:10:31,880 --> 01:10:34,320 HAVE OTHER STUFF GOING ON, 2125 01:10:34,320 --> 01:10:36,240 HEALTH ISSUES, PHYSICAL HEALTH 2126 01:10:36,240 --> 01:10:38,000 ISSUES, LEARNING CHALLENGES, AND 2127 01:10:38,000 --> 01:10:39,280 MANY PEOPLE OR MOST PEOPLE 2128 01:10:39,280 --> 01:10:42,240 REALLY ON THE SPECTRUM ARE 2129 01:10:42,240 --> 01:10:43,800 SIMULTANEOUSLY TRYING TO 2130 01:10:43,800 --> 01:10:45,480 NAVIGATE ENGAGEMENT WITH 2131 01:10:45,480 --> 01:10:47,440 DIFFERENT SERVICE ECOSYSTEMS, 2132 01:10:47,440 --> 01:10:49,560 DIFFERENT SECTORS, EDUCATION, 2133 01:10:49,560 --> 01:10:51,040 LET CARE, MENTAL HEALTHCARE, 2134 01:10:51,040 --> 01:10:52,080 EMPLOYMENT, HOUSING, YOU KNOW, 2135 01:10:52,080 --> 01:10:54,160 THE LIST GOES ON. 2136 01:10:54,160 --> 01:10:56,520 AND WE STILL DON'T HAVE A REALLY 2137 01:10:56,520 --> 01:10:58,600 GREAT METHODOLOGICAL TOOLKIT OR 2138 01:10:58,600 --> 01:11:02,760 CONCEPTUAL FRAMEWORK FOR MAKING 2139 01:11:02,760 --> 01:11:05,040 USEFUL AND INSIGHTFUL 2140 01:11:05,040 --> 01:11:07,760 CONCLUSIONS ABOUT THAT 2141 01:11:07,760 --> 01:11:08,400 COMPLEX -- THE COMPLEX NATURE OF 2142 01:11:08,400 --> 01:11:08,760 THAT JOURNEY. 2143 01:11:08,760 --> 01:11:10,520 SO THAT'S ANOTHER AREA THAT 2144 01:11:10,520 --> 01:11:13,000 WE'RE EAGER TO CONTRIBUTE TO IN 2145 01:11:13,000 --> 01:11:14,560 OUR WORK HERE AT MATHEMATICA. 2146 01:11:14,560 --> 01:11:15,960 AND ANOTHER GAP THAT WE'RE 2147 01:11:15,960 --> 01:11:18,800 TRYING TO STEP INTO RIGHT NOW IS 2148 01:11:18,800 --> 01:11:20,240 THAT THE FIELD OF AUTISM 2149 01:11:20,240 --> 01:11:21,480 RESEARCH HAS THUS FAR BEEN KIND 2150 01:11:21,480 --> 01:11:26,400 OF SLOW TO RESPOND TO THINGS 2151 01:11:26,400 --> 01:11:27,840 LIKE THE COVID PUBLIC HEALTH 2152 01:11:27,840 --> 01:11:30,120 EMERGENCY AND GROWING RISK OF 2153 01:11:30,120 --> 01:11:31,160 THINGS LIKE CLIMATE CHANGE. 2154 01:11:31,160 --> 01:11:33,080 SO WE HAVE SOME SEED MONEY WE'RE 2155 01:11:33,080 --> 01:11:35,360 USING TO DELVE INTO BOTH THOSE 2156 01:11:35,360 --> 01:11:37,320 TOPICS RIGHT NOW USING MEDICAID 2157 01:11:37,320 --> 01:11:38,480 DATA, AND WE'RE GOING TO BE 2158 01:11:38,480 --> 01:11:39,760 CHARTING AND PUBLISHING A REPORT 2159 01:11:39,760 --> 01:11:41,840 ON HOW THE PANDEMIC KIND OF MADE 2160 01:11:41,840 --> 01:11:46,200 ITS WAY THROUGH THE MEDICAID 2161 01:11:46,200 --> 01:11:47,520 POPULATION OF FOLKS ON THE 2162 01:11:47,520 --> 01:11:48,400 AUTISM SPECTRUM, BOTH CHILDREN 2163 01:11:48,400 --> 01:11:53,000 AND ADULTS, AND THEN WE'RES AREO 2164 01:11:53,000 --> 01:11:56,360 BEGINNING TO PREPARE THE DATA 2165 01:11:56,360 --> 01:11:58,440 FOR LINKING TO CLIMATE RISK DATA 2166 01:11:58,440 --> 01:12:00,720 LIKE WILDFIRE AND HEAT WAVE DATA 2167 01:12:00,720 --> 01:12:02,400 TO UNDERSTAND HOW CLIMATE CHANGE 2168 01:12:02,400 --> 01:12:04,920 IS SLOWING UP AS A RISK FOR 2169 01:12:04,920 --> 01:12:06,120 HEALTH AND DEVELOPMENT AMONG 2170 01:12:06,120 --> 01:12:09,400 YOUNG ADULTS ON THE SPECTRUM. 2171 01:12:09,400 --> 01:12:11,400 SO LOOKING AHEAD, WE REALLY WANT 2172 01:12:11,400 --> 01:12:14,880 TO BE PIONEERING AND LEADING ON 2173 01:12:14,880 --> 01:12:16,760 THIS INTEGRATION OF THINGS THAT 2174 01:12:16,760 --> 01:12:19,480 ARE OFTEN TREATED SEPARATELY. 2175 01:12:19,480 --> 01:12:21,640 EQUITY, THE LIFE COURSE 2176 01:12:21,640 --> 01:12:22,320 PERSPECTIVE, THE SOCIAL 2177 01:12:22,320 --> 01:12:25,160 DETERMINANTS OF HEALTH 2178 01:12:25,160 --> 01:12:27,760 PERSPECTIVE, AND THE APPLIED 2179 01:12:27,760 --> 01:12:29,640 RESEARCH AND POLICY AND PROGRAM 2180 01:12:29,640 --> 01:12:30,400 EVALUATION PERSPECTIVE. 2181 01:12:30,400 --> 01:12:32,840 SO AS WE MOVE FORWARD WITH 2182 01:12:32,840 --> 01:12:34,800 BUILDING THIS PROGRAM, WE'RE 2183 01:12:34,800 --> 01:12:38,920 SUPER EAGER -- WE'RE A HIGHLY 2184 01:12:38,920 --> 01:12:39,880 COLLABORATIVE WORK SETTING AND 2185 01:12:39,880 --> 01:12:41,880 WE COLLABORATE ALL THE TIME WITH 2186 01:12:41,880 --> 01:12:43,680 ACADEMIC PARTNERS, FOUNDATION 2187 01:12:43,680 --> 01:12:45,200 PARTNERS, WITH OTHER COMPANIES 2188 01:12:45,200 --> 01:12:46,960 AND GOVERNMENT AGENCIES AS WELL. 2189 01:12:46,960 --> 01:12:48,640 SO JUST KNOW THAT WE'RE EAGER TO 2190 01:12:48,640 --> 01:12:49,200 COLLABORATE. 2191 01:12:49,200 --> 01:12:50,240 WE'RE REALLY PASSIONATE ABOUT 2192 01:12:50,240 --> 01:12:51,800 THIS WORK AND EXPANDING THE WORK 2193 01:12:51,800 --> 01:12:53,760 HERE AT MATHEMATICA, AND WE HAVE 2194 01:12:53,760 --> 01:12:57,160 A TREMENDOUS INFRASTRUCTURE THAT 2195 01:12:57,160 --> 01:12:57,880 OFTEN COMPLEMENTS THE STRENGTHS 2196 01:12:57,880 --> 01:13:00,400 THAT MANY UNIVERSITY 2197 01:13:00,400 --> 01:13:01,640 INVESTIGATORS HAVE WITH OUR 2198 01:13:01,640 --> 01:13:03,840 CAPACITY FOR LARGE SCALE 2199 01:13:03,840 --> 01:13:05,080 RESEARCH OF BIG QUESTIONS AND 2200 01:13:05,080 --> 01:13:09,400 BIG PROGRAMS THAT ARE ACROSS -- 2201 01:13:09,400 --> 01:13:10,800 REALLY ACROSS A NATIONAL AND 2202 01:13:10,800 --> 01:13:13,320 INTERNATIONAL SCALE. 2203 01:13:13,320 --> 01:13:14,920 ANOTHER THING THAT WE'RE QUITE 2204 01:13:14,920 --> 01:13:16,240 PASSIONATE ABOUT, OFTENTIMES 2205 01:13:16,240 --> 01:13:18,200 RESEARCH ON EMPLOYMENT AND 2206 01:13:18,200 --> 01:13:19,560 INTERVENTIONS IN THE AUTISM 2207 01:13:19,560 --> 01:13:21,720 SPACE FOCUS ON DEVELOPING A NEW 2208 01:13:21,720 --> 01:13:24,480 APPROACH OR A NEW PROGRAM MODEL, 2209 01:13:24,480 --> 01:13:26,960 WHICH IS AWESOME. 2210 01:13:26,960 --> 01:13:28,160 WE NEED MORE OF THAT, THAT'S 2211 01:13:28,160 --> 01:13:28,960 GREAT. 2212 01:13:28,960 --> 01:13:30,920 BUT ANOTHER COMPLEMENTARY 2213 01:13:30,920 --> 01:13:32,720 PERSPECTIVE IS HOW DO WE TAKE -- 2214 01:13:32,720 --> 01:13:34,000 BECAUSE THE CHALLENGE, RIGHT, 2215 01:13:34,000 --> 01:13:35,120 WHEN YOU'RE DEVELOPING A NEW 2216 01:13:35,120 --> 01:13:36,640 PROGRAM OR A NEW INTERVENTION 2217 01:13:36,640 --> 01:13:38,000 MODEL, LET'S SAY IT WORKS, THEN 2218 01:13:38,000 --> 01:13:39,560 YOU'RE LIKE, OH, GOSH, HOW ARE 2219 01:13:39,560 --> 01:13:40,640 WE GOING TO SCALE THIS, WHO'S 2220 01:13:40,640 --> 01:13:42,000 GOING TO PAY FOR IT, WHERE WILL 2221 01:13:42,000 --> 01:13:43,760 IT BE IMPLEMENTED, WHO WOULD 2222 01:13:43,760 --> 01:13:46,080 IMLEMIMPLEMENT IT? 2223 01:13:46,080 --> 01:13:47,440 A LOT OF THOSE SCALING QUESTIONS 2224 01:13:47,440 --> 01:13:50,360 ARE OFTEN UNDERCONCEPTUALIZED AT 2225 01:13:50,360 --> 01:13:51,520 THE OUTSET OF INTERVENTION 2226 01:13:51,520 --> 01:13:53,080 RESEARCH, SO WE'RE ALSO TRYING 2227 01:13:53,080 --> 01:13:54,640 TO TACKLE THIS CHALLENGE FROM 2228 01:13:54,640 --> 01:13:56,000 THE OTHER DIRECTION, WHICH IS 2229 01:13:56,000 --> 01:13:58,360 SAYING, WELL, WE HAVE 2230 01:13:58,360 --> 01:13:59,480 INFRASTRUCTURE THAT'S ALREADY AT 2231 01:13:59,480 --> 01:14:01,880 SCALE, AND HOW CAN WE MAKE 2232 01:14:01,880 --> 01:14:03,160 INFRASTRUCTURE AND PROGRAMS THAT 2233 01:14:03,160 --> 01:14:06,200 ARE ALREADY AT SCALE MORE 2234 01:14:06,200 --> 01:14:08,760 SUCCESSFUL AT INCLUDING AND 2235 01:14:08,760 --> 01:14:09,440 HELPING AUTISTIC PEOPLE? 2236 01:14:09,440 --> 01:14:11,640 SO FOR EXAMPLE, WE HAVE SOCIAL 2237 01:14:11,640 --> 01:14:13,040 SAFETY NET PROGRAM, WHICH ARE 2238 01:14:13,040 --> 01:14:15,000 VITAL, THEY'RE A LIFE LINE FOR 2239 01:14:15,000 --> 01:14:15,840 PEOPLE ON THE AUTISM SPECTRUM 2240 01:14:15,840 --> 01:14:18,400 AND THEIR FAMILIES. 2241 01:14:18,400 --> 01:14:20,720 AND EMPLOYMENT PROGRAMS LIKE JOB 2242 01:14:20,720 --> 01:14:23,800 CORPS AND AMERICAN JOB CENTERS 2243 01:14:23,800 --> 01:14:25,560 ALREADY AT SCALE SERVING TENS OF 2244 01:14:25,560 --> 01:14:26,960 THOUSANDS OF YOUTH, HOW CAN WE 2245 01:14:26,960 --> 01:14:28,560 MAKE THEM MORE SUCCESSFUL AT 2246 01:14:28,560 --> 01:14:29,640 INCLUDING AUTISTIC ADULTS? 2247 01:14:29,640 --> 01:14:31,280 I'M GOING TO CONCLUDE THERE, AND 2248 01:14:31,280 --> 01:14:32,600 THANK YOU ALL SO MUCH FOR YOUR 2249 01:14:32,600 --> 01:14:34,000 TIME THIS MORNING, AND IT REALLY 2250 01:14:34,000 --> 01:14:35,200 A TREAT TO BE HERE AND I THINK 2251 01:14:35,200 --> 01:14:36,240 WE HAVE TIME FOR A COUPLE 2252 01:14:36,240 --> 01:14:37,760 QUESTIONS. 2253 01:14:37,760 --> 01:14:45,960 >>WELL, THANK YOU VERY MUCH, 2254 01:14:45,960 --> 01:14:47,040 DR. SHATTUCK AND DR. PATNAIK. 2255 01:14:47,040 --> 01:14:49,960 WE HAVE JUST A FEW MOMENTS FOR 2256 01:14:49,960 --> 01:14:51,200 QUESTIONS OR COMMENTS FROM 2257 01:14:51,200 --> 01:14:52,240 MEMBERS OF THE COMMITTEE. 2258 01:14:52,240 --> 01:14:54,320 SO I'LL ASK YOU EITHER TO SEND 2259 01:14:54,320 --> 01:14:56,720 THEM TO SEND COMMENTS HERE. 2260 01:14:56,720 --> 01:14:59,600 I HAVE TWO HANDS RAISED ALREADY, 2261 01:14:59,600 --> 01:15:00,960 AND SO PROBABLY THAT'S ALL WE'LL 2262 01:15:00,960 --> 01:15:02,360 GET TO, BUT IF YOU'D LIKE TO TRY 2263 01:15:02,360 --> 01:15:05,560 TO TALK AFTER THAT, PLEASE RAISE 2264 01:15:05,560 --> 01:15:07,000 YOUR HAPPENED. 2265 01:15:07,000 --> 01:15:10,720 WE'RE GOING TO START WITH YETTA 2266 01:15:10,720 --> 01:15:12,800 MYRICK AND THEN DENA GASSNER. 2267 01:15:12,800 --> 01:15:13,280 YETTA. 2268 01:15:13,280 --> 01:15:13,760 >>THANK YOU FOR YOUR 2269 01:15:13,760 --> 01:15:14,440 PRESENTATION AND ALL YOUR WORK. 2270 01:15:14,440 --> 01:15:16,000 I HAVE SO MANY QUESTIONS BUT 2271 01:15:16,000 --> 01:15:17,080 YOU'VE ANSWERED SOME OF THEM, SO 2272 01:15:17,080 --> 01:15:18,600 THAT'S GOOD, I WON'T WASTE A LOT 2273 01:15:18,600 --> 01:15:22,560 OF TIME, COULD YOU SPEAK ABOUT 2274 01:15:22,560 --> 01:15:23,400 HOW DIVERSE THE PARTICIPANTS 2275 01:15:23,400 --> 01:15:25,240 WERE IN YOUR LISTENING SESSION? 2276 01:15:25,240 --> 01:15:27,000 BECAUSE YOU MENTIONED, YOU KNOW, 2277 01:15:27,000 --> 01:15:34,280 THE EQUITY PIECE AND MAKING SURE 2278 01:15:34,280 --> 01:15:35,360 THAT THESE PROGRAMS ARE 2279 01:15:35,360 --> 01:15:36,200 ACCESSIBLE TO DIFFERENT GROUPS 2280 01:15:36,200 --> 01:15:37,240 OF PEOPLE, SO COULD YOU SPEAK TO 2281 01:15:37,240 --> 01:15:37,640 THAT? 2282 01:15:37,640 --> 01:15:40,000 AND THEN ALSO, YOU NOTED ABOUT 2283 01:15:40,000 --> 01:15:42,240 HOW YOU WERE LOOKING AT THE VR 2284 01:15:42,240 --> 01:15:43,440 PROGRAMS, BUT I WONDER IF THERE 2285 01:15:43,440 --> 01:15:46,880 IS ANY THOUGHT ABOUT LOOKING AT 2286 01:15:46,880 --> 01:15:48,280 THE PRE-EMPLOYMENT TRANSITION 2287 01:15:48,280 --> 01:15:50,440 SERVICES, WHICH ARE A PRECURSOR 2288 01:15:50,440 --> 01:15:54,880 TO VR SERVICES, AND HOW -- LIKE 2289 01:15:54,880 --> 01:15:55,880 INVESTIGATING THAT TO SEE WHAT 2290 01:15:55,880 --> 01:15:57,000 ACCESS LOOK LIKE. 2291 01:15:57,000 --> 01:15:58,400 SO I WAS JUST CURIOUS TO KNOW IF 2292 01:15:58,400 --> 01:15:59,360 YOU ARE PLANNING ON 2293 01:15:59,360 --> 01:16:00,000 INVESTIGATING THAT AS WELL. 2294 01:16:00,000 --> 01:16:00,880 THANK YOU. 2295 01:16:00,880 --> 01:16:03,080 >>ANKITA, CAN YOU HANDLE THESE 2296 01:16:03,080 --> 01:16:03,280 ONES? 2297 01:16:03,280 --> 01:16:07,280 >>YES, HAPPY TO. 2298 01:16:07,280 --> 01:16:09,480 CAN YOU ALL HEAR ME OKAY? 2299 01:16:09,480 --> 01:16:09,720 >>YES. 2300 01:16:09,720 --> 01:16:10,880 >>GREAT. 2301 01:16:10,880 --> 01:16:11,880 YEAH, THAT'S A GREAT QUESTION 2302 01:16:11,880 --> 01:16:13,120 ABOUT THE LISTENING SESSION 2303 01:16:13,120 --> 01:16:13,720 PARTICIPANTS. 2304 01:16:13,720 --> 01:16:16,720 SO WE MADE A VERY CONCERTED 2305 01:16:16,720 --> 01:16:19,120 EFFORT TO TRY TO CAST A WIDE NET 2306 01:16:19,120 --> 01:16:22,800 TO ENROLL PEOPLE, SO ESPECIALLY 2307 01:16:22,800 --> 01:16:25,040 FOR THE STAKEHOLDER LISTENING 2308 01:16:25,040 --> 01:16:26,600 SESSION, WE WERE VERY 2309 01:16:26,600 --> 01:16:27,400 INTENTIONAL ABOUT, FOR EXAMPLE, 2310 01:16:27,400 --> 01:16:31,000 YOU KNOW, CAPTURING PEOPLE AT 2311 01:16:31,000 --> 01:16:32,960 UNIVERSITIES IN DIFFERENT PARTS 2312 01:16:32,960 --> 01:16:33,760 OF THE UNITED STATES. 2313 01:16:33,760 --> 01:16:35,320 SERVICE PROVIDERS FROM DIFFERENT 2314 01:16:35,320 --> 01:16:36,880 STATES, ET CETERA. 2315 01:16:36,880 --> 01:16:37,880 OF COURSE IMPOSSIBLE TO BE 2316 01:16:37,880 --> 01:16:39,200 REPRESENTATIVE UNLESS YOU HAVE A 2317 01:16:39,200 --> 01:16:42,520 VERY LARGE SAMPLE OF THINGS, 2318 01:16:42,520 --> 01:16:42,720 RIGHT. 2319 01:16:42,720 --> 01:16:43,880 FOR THE PUBLIC LISTENING 2320 01:16:43,880 --> 01:16:45,560 SESSIONS, WE ALSO CAST A WIDE 2321 01:16:45,560 --> 01:16:46,160 NET. 2322 01:16:46,160 --> 01:16:49,200 WE ESSENTIALLY PUT AN OPEN CALL, 2323 01:16:49,200 --> 01:16:51,640 USED TWITTER, SOCIAL MEDIA, 2324 01:16:51,640 --> 01:16:52,240 INSTAGRAM, ALSO USED OUR 2325 01:16:52,240 --> 01:16:53,720 NETWORKS TO TRY TO SPREAD THE 2326 01:16:53,720 --> 01:16:55,720 WORD USING THE SNOWBALLING 2327 01:16:55,720 --> 01:16:56,600 APPROACH, ET CETERA. 2328 01:16:56,600 --> 01:16:59,200 WE DID NOT SYSTEMATICALLY 2329 01:16:59,200 --> 01:17:00,720 COLLECT INFORMATION ON RACE AND 2330 01:17:00,720 --> 01:17:01,000 ETHNICITY. 2331 01:17:01,000 --> 01:17:02,920 IT WAS OPTIONAL BECAUSE WE DID 2332 01:17:02,920 --> 01:17:06,960 NOT WANT TO MAKE IT A 2333 01:17:06,960 --> 01:17:08,360 REQUIREMENT THAT WOULD 2334 01:17:08,360 --> 01:17:09,360 DISINCENTIVIZE PEOPLE FROM 2335 01:17:09,360 --> 01:17:09,920 PARTICIPATING, FOR EXAMPLE. 2336 01:17:09,920 --> 01:17:12,560 SO I CAN CERTAINLY CHECK WITH 2337 01:17:12,560 --> 01:17:15,760 DOL ABOUT SHARING SOME OF THE 2338 01:17:15,760 --> 01:17:17,200 INFORMATION THAT WE DO HAVE, BUT 2339 01:17:17,200 --> 01:17:20,800 I'LL CAVEAT, IT DIDN'T CAPTURE 2340 01:17:20,800 --> 01:17:21,360 EVERYBODY WHO PARTICIPATED 2341 01:17:21,360 --> 01:17:23,440 BECAUSE WE DIDN'T WANT TO SCARE 2342 01:17:23,440 --> 01:17:26,640 ANYONE OFF FROM PARTICIPATING BY 2343 01:17:26,640 --> 01:17:29,080 MAKING IT A DATA REQUIREMENT. 2344 01:17:29,080 --> 01:17:30,480 >>I GET THAT, THANK YOU. 2345 01:17:30,480 --> 01:17:32,520 AND THEN TO MY SECOND 2346 01:17:32,520 --> 01:17:32,840 QUESTION -- 2347 01:17:32,840 --> 01:17:34,240 >>YETTA, I'M GOING TO ASK THAT 2348 01:17:34,240 --> 01:17:36,160 WE MOVE ON TO DENA. 2349 01:17:36,160 --> 01:17:37,560 IF WE HAVE TIME, WE'LL CIRCLE 2350 01:17:37,560 --> 01:17:38,320 BACK TO YOU, ALL RIGHT? 2351 01:17:38,320 --> 01:17:39,680 >>OKAY, THANK YOU. 2352 01:17:39,680 --> 01:17:39,920 >>DENA. 2353 01:17:39,920 --> 01:17:40,880 >>HI, FOLKS. 2354 01:17:40,880 --> 01:17:42,160 THANK YOU SO MUCH FOR ALL OF 2355 01:17:42,160 --> 01:17:46,600 YOUR WORK. 2356 01:17:46,600 --> 01:17:48,360 I JUST -- IF I'M ONLY GOING TO 2357 01:17:48,360 --> 01:17:49,560 GET ONE QUESTION, I'M GOING TO 2358 01:17:49,560 --> 01:17:50,760 ASK ONE THING, I'M GOING TO ASK 2359 01:17:50,760 --> 01:17:52,600 FIRST, CAN WE GET ALL YOUR 2360 01:17:52,600 --> 01:17:53,600 CITATIONS, BUT SECONDLY, I'M 2361 01:17:53,600 --> 01:17:57,120 GOING TO SAY THAT WHILE I 2362 01:17:57,120 --> 01:18:00,240 APPRECIATE ALL OF THIS, I AM 2363 01:18:00,240 --> 01:18:05,480 GRAVELY CONCERNED THAT WE HAVE 2364 01:18:05,480 --> 01:18:07,480 AN ENTIRE COMMUNITY OF 2365 01:18:07,480 --> 01:18:10,080 WORKFORCE-READY INDIVIDUALS WHO 2366 01:18:10,080 --> 01:18:11,560 HAVE EXPERIENCED REPEATED 2367 01:18:11,560 --> 01:18:12,480 EMPLOYMENT FAILURES DUE TO NOT 2368 01:18:12,480 --> 01:18:14,480 EVEN HAVING A DIAGNOSIS 2369 01:18:14,480 --> 01:18:17,120 AVAILABLE TO THEM, THAT WE'RE 2370 01:18:17,120 --> 01:18:21,600 NOT TALKING ABOUT TODAY. 2371 01:18:21,600 --> 01:18:22,560 WE'RE TALKING ABOUT YOUNG 2372 01:18:22,560 --> 01:18:23,960 ADULTS, AND I HAVE ONE OF THOSE 2373 01:18:23,960 --> 01:18:27,680 AND, YOU KNOW, I FEEL THAT VOC 2374 01:18:27,680 --> 01:18:29,480 REHAB IS REALLY NOT PREPARED TO 2375 01:18:29,480 --> 01:18:31,000 HELP MIDDLE-FUNCTIONING PEOPLE 2376 01:18:31,000 --> 01:18:31,680 FIND EMPLOYMENT. 2377 01:18:31,680 --> 01:18:34,320 EVERYTHING IS EITHER TASK-DRIVEN 2378 01:18:34,320 --> 01:18:36,960 OR VERY LABOR-DRIVEN WORK. 2379 01:18:36,960 --> 01:18:37,840 THERE'S NOTHING IN THE MIDDLE, 2380 01:18:37,840 --> 01:18:40,920 THERE'S NO PHLEBOTOMY JOBS, IF 2381 01:18:40,920 --> 01:18:42,280 YOU WILL, AND THEY DON'T HAVE 2382 01:18:42,280 --> 01:18:44,320 THE ABILITY TO MAKE THAT HAPPEN 2383 01:18:44,320 --> 01:18:44,920 WHERE WE'VE BEEN. 2384 01:18:44,920 --> 01:18:46,200 WE'VE BEEN IN FIVE DIFFERENT 2385 01:18:46,200 --> 01:18:46,440 STATES. 2386 01:18:46,440 --> 01:18:48,320 BUT I'M VERY CONCERNED THAT 2387 01:18:48,320 --> 01:18:50,480 WE'RE NOT INVESTIGATING PEOPLE 2388 01:18:50,480 --> 01:18:53,200 BETWEEN THE AGES OF 30 AND 60, 2389 01:18:53,200 --> 01:18:55,480 WHO WOULD REALLY LIKE TO BE IN 2390 01:18:55,480 --> 01:18:56,960 THE WORKPLACE AND HAVE JUST 2391 01:18:56,960 --> 01:18:59,320 NEVER HAD A REAL MEANINGFUL 2392 01:18:59,320 --> 01:18:59,760 OPPORTUNITY. 2393 01:18:59,760 --> 01:19:00,760 WHAT ARE WE GOING TO DO ABOUT 2394 01:19:00,760 --> 01:19:05,440 THEM F YOU DO, IF YOU DON'T MIN? 2395 01:19:05,440 --> 01:19:05,720 THANK YOU. 2396 01:19:05,720 --> 01:19:08,400 >>WELL, IN 10 WORDS OR LESS -- 2397 01:19:08,400 --> 01:19:09,640 THAT'S A BIG QUESTION, DENA. 2398 01:19:09,640 --> 01:19:11,120 AND THANK YOU, AS ALWAYS, I LOVE 2399 01:19:11,120 --> 01:19:16,280 YOUR PROVOCATIVE THOUGHT PROCESS 2400 01:19:16,280 --> 01:19:17,400 AND ADVOCACY FOR ASKING THE BIG 2401 01:19:17,400 --> 01:19:17,680 QUESTIONS. 2402 01:19:17,680 --> 01:19:18,920 I CAN'T REALLY ADDRESS THAT 2403 01:19:18,920 --> 01:19:20,120 QUESTION IN THE MINUTE THAT I'VE 2404 01:19:20,120 --> 01:19:20,920 GOT HERE. 2405 01:19:20,920 --> 01:19:22,520 BUT I WOULD LOVE TO TAKE THIS 2406 01:19:22,520 --> 01:19:25,600 CONVERSATION OFFLINE WITH YOU 2407 01:19:25,600 --> 01:19:27,120 AND GET YOUR THOUGHTS ON, LIKE, 2408 01:19:27,120 --> 01:19:29,040 HOW WE CAN INFUSE SOME OF THAT 2409 01:19:29,040 --> 01:19:30,760 THINKING INTO OUR WORK HERE AT 2410 01:19:30,760 --> 01:19:31,040 MATHEMATICA. 2411 01:19:31,040 --> 01:19:31,960 >>MUCH APPRECIATED. 2412 01:19:31,960 --> 01:19:32,480 THANK YOU, PAUL. 2413 01:19:32,480 --> 01:19:33,000 >>SURE. 2414 01:19:33,000 --> 01:19:34,400 >>THANKS. 2415 01:19:34,400 --> 01:19:37,680 AND THEN I BELIEVE STEVEN HAS A 2416 01:19:37,680 --> 01:19:38,800 COMMENT THAT WAS PUT INTO THE 2417 01:19:38,800 --> 01:19:41,400 TEXT, AND THEN WE'LL END THIS 2418 01:19:41,400 --> 01:19:42,240 PORTION OF THE MEETING. 2419 01:19:42,240 --> 01:19:43,960 GO AHEAD, STEVEN. 2420 01:19:43,960 --> 01:19:44,880 >>HI THERE, THIS IS STEVEN. 2421 01:19:44,880 --> 01:19:47,440 I HAVE A COMMENT FROM LINDSEY 2422 01:19:47,440 --> 01:19:47,680 NEBEKER. 2423 01:19:47,680 --> 01:19:50,360 SHE SAYS, THANK YOU FOR YOUR 2424 01:19:50,360 --> 01:19:50,800 PRESENTATION. 2425 01:19:50,800 --> 01:19:52,840 IN REGARDS TO THE YOUNG ADULTS 2426 01:19:52,840 --> 01:19:56,360 ON THE AUTISM SPECTRUM WHO ARE 2427 01:19:56,360 --> 01:19:57,200 CAPTURED IN THE DATA INVENTORY 2428 01:19:57,200 --> 01:19:58,000 YOU COLLECTED. 2429 01:19:58,000 --> 01:19:59,680 ARE YOU ABLE TO PROVIDE MORE 2430 01:19:59,680 --> 01:20:00,760 INFORMATION ON THE DEMOGRAPHICS 2431 01:20:00,760 --> 01:20:02,040 OF SUPPORT NEEDS? 2432 01:20:02,040 --> 01:20:04,040 ARE YOU ABLE TO PROVIDE AN 2433 01:20:04,040 --> 01:20:06,480 APPROXIMATE PERCENTAGE OF 2434 01:20:06,480 --> 01:20:07,640 PARTICIPANTS WHO ARE 2435 01:20:07,640 --> 01:20:09,840 NON-SPEAKING, REQUIRE A SUPPORT 2436 01:20:09,840 --> 01:20:13,480 COACH OR JOB COACH, AND 2437 01:20:13,480 --> 01:20:14,320 PARTICIPANTS WITH HIGH SUPPORT 2438 01:20:14,320 --> 01:20:14,800 NEEDS? 2439 01:20:14,800 --> 01:20:15,800 ARE THERE ANY STRATEGIES YOU 2440 01:20:15,800 --> 01:20:17,480 HAVE IN PLACE TO CAPTURE MORE 2441 01:20:17,480 --> 01:20:19,240 REPRESENTATION OF AUTISTIC YOUNG 2442 01:20:19,240 --> 01:20:20,480 ADULTS WITH COMPLEX SUPPORT 2443 01:20:20,480 --> 01:20:22,320 NEEDS IN YOUR RESEARCH EFFORTS 2444 01:20:22,320 --> 01:20:24,840 IN RELATION TO EMPLOYMENT 2445 01:20:24,840 --> 01:20:25,800 BARRIER, RECRUITMENT AND 2446 01:20:25,800 --> 01:20:26,720 OUTCOMES? 2447 01:20:26,720 --> 01:20:27,960 >>THAT'S A REALLY GOOD 2448 01:20:27,960 --> 01:20:29,000 QUESTION. 2449 01:20:29,000 --> 01:20:32,680 I CAN TAKE THAT, PAUL. 2450 01:20:32,680 --> 01:20:36,840 SO I WOULD BE DELIGHTED TO SHARE 2451 01:20:36,840 --> 01:20:38,040 THE DATA INVENTORY WITH YOU IN 2452 01:20:38,040 --> 01:20:38,480 THE CHAT. 2453 01:20:38,480 --> 01:20:39,440 THERE IS NOT A LOT OF 2454 01:20:39,440 --> 01:20:40,760 INFORMATION OUT THERE ON THE 2455 01:20:40,760 --> 01:20:42,720 SUPPORT NEEDS OF YOUNG AUTISTIC 2456 01:20:42,720 --> 01:20:43,000 ADULTS. 2457 01:20:43,000 --> 01:20:45,840 AS I MENTIONED, NONE OF THE DATA 2458 01:20:45,840 --> 01:20:47,600 SOURCES ARE SORT OF FOCUSED ON 2459 01:20:47,600 --> 01:20:50,160 AUTISM SO THE TYPES OF QUESTIONS 2460 01:20:50,160 --> 01:20:51,400 THAT THEY ASK ON A SURVEY, FOR 2461 01:20:51,400 --> 01:20:53,480 EXAMPLE, AREN'T REALLY FOCUSED 2462 01:20:53,480 --> 01:20:54,080 ON AUTISM. 2463 01:20:54,080 --> 01:20:56,240 THE ADMINISTRATIVE DATASETS, YOU 2464 01:20:56,240 --> 01:20:59,000 KNOW, DON'T CAPTURE INFORMATION, 2465 01:20:59,000 --> 01:21:00,120 FOR EXAMPLE, THAT COULD IDENTIFY 2466 01:21:00,120 --> 01:21:02,280 SOMEONE WHO IS MINIMALLY VERBAL 2467 01:21:02,280 --> 01:21:06,440 OR NON-VERBAL EITHER. 2468 01:21:06,440 --> 01:21:07,920 SO THAT IS DEFINITELY A GAP IN 2469 01:21:07,920 --> 01:21:09,120 THE DATA THAT EXISTS. 2470 01:21:09,120 --> 01:21:10,360 I'LL NOTE HERE, I MENTIONED AT 2471 01:21:10,360 --> 01:21:11,560 THE TOP OF MY PRESENTATION THAT 2472 01:21:11,560 --> 01:21:13,400 THERE ARE SURVEYS THAT 2473 01:21:13,400 --> 01:21:16,000 MATHEMATICA MIGHT BE CONDUCTING 2474 01:21:16,000 --> 01:21:17,400 OF YOUNG ADULTS ON THE AUTISM 2475 01:21:17,400 --> 01:21:18,720 SPECTRUM AND THAT IS VERY MUCH 2476 01:21:18,720 --> 01:21:21,680 ON OUR RADAR AS AN ELEMENT THAT 2477 01:21:21,680 --> 01:21:23,040 WE SHOULD BE CAPTURING. 2478 01:21:23,040 --> 01:21:24,640 IT'S VERY HARD TO ADDRESS ANY 2479 01:21:24,640 --> 01:21:25,560 QUESTION JUST GIVEN THE NATURE 2480 01:21:25,560 --> 01:21:27,640 OF AUTISM, IT WOULD BE A 2481 01:21:27,640 --> 01:21:29,040 DISSERVICE TO COLLECT NEW 2482 01:21:29,040 --> 01:21:30,120 INFORMATION WITHOUT REALLY 2483 01:21:30,120 --> 01:21:31,960 CAPTURING THE SPECTRUM OF 2484 01:21:31,960 --> 01:21:34,520 SUPPORT NEEDS THAT PEOPLE HAVE, 2485 01:21:34,520 --> 01:21:35,600 SO UNFORTUNATELY THAT DOESN'T 2486 01:21:35,600 --> 01:21:38,960 EXIST IN THE EXISTING DATA 2487 01:21:38,960 --> 01:21:40,280 SYSTEMATICALLY, BUT SHOULD WE BE 2488 01:21:40,280 --> 01:21:44,480 COLLECTING NEW DATA ON OUR 2489 01:21:44,480 --> 01:21:45,440 SURVEYS IS DEFINITELY SOMETHING 2490 01:21:45,440 --> 01:21:47,520 WE'LL BE PAYING ATTENTION TO. 2491 01:21:47,520 --> 01:21:49,520 >>THANK YOU VERY MUCH, DRS. 2492 01:21:49,520 --> 01:21:51,000 PATNAIK AND SHATTUCK FOR YOUR 2493 01:21:51,000 --> 01:21:52,480 PRESENTATIONS TODAY FOR THE 2494 01:21:52,480 --> 01:21:53,040 ONGOING RESEARCH THAT'S SO 2495 01:21:53,040 --> 01:21:53,680 IMPORTANT. 2496 01:21:53,680 --> 01:21:57,120 YOU HEARD HOW THERE'S A HUNGER 2497 01:21:57,120 --> 01:21:58,040 NOT JUST IN TERMS OF WHAT YOU'RE 2498 01:21:58,040 --> 01:22:01,040 ALREADY DOING BUT IN EXPANDING 2499 01:22:01,040 --> 01:22:03,360 RESEARCH INTO THE ROLES AND 2500 01:22:03,360 --> 01:22:04,880 MECHANISMS OF IMPROVING 2501 01:22:04,880 --> 01:22:07,080 EMPLOYMENT IN INDIVIDUALS WITH 2502 01:22:07,080 --> 01:22:08,560 AUTISM, SO THANKS FOR COMING TO 2503 01:22:08,560 --> 01:22:11,240 US AND TELLING US WHAT YOU ARE 2504 01:22:11,240 --> 01:22:11,480 DOING. 2505 01:22:11,480 --> 01:22:12,680 AND THAT GIVES US FOOD FOR 2506 01:22:12,680 --> 01:22:15,320 THOUGHT AS WE MOVE FORWARD. 2507 01:22:15,320 --> 01:22:17,600 AND I APOLOGIZE TO YETTA AND 2508 01:22:17,600 --> 01:22:18,520 OTHER MEMBERS OF THE COMMITTEE 2509 01:22:18,520 --> 01:22:20,000 WHO MIGHT HAVE LIKED TO ADD 2510 01:22:20,000 --> 01:22:22,080 ADDITIONAL QUESTIONS, BUT WE ARE 2511 01:22:22,080 --> 01:22:23,840 RUNNING A BIT OVER. 2512 01:22:23,840 --> 01:22:24,920 WE'RE GOING TO TAKE A BREAK NOW. 2513 01:22:24,920 --> 01:22:26,480 WE'RE GOING TO TAKE A 10-MINUTE 2514 01:22:26,480 --> 01:22:26,920 BREAK. 2515 01:22:26,920 --> 01:22:30,040 WE'LL BE BACK AT 11:35. 2516 01:22:30,040 --> 01:22:34,160 AND FOR THE NEXT SEGMENT OF OUR 2517 01:22:34,160 --> 01:22:35,360 MEETING TODAY. 2518 01:22:35,360 --> 01:22:37,640 SO COMMITTEE MEMBERS ARE WELCOME 2519 01:22:37,640 --> 01:22:41,520 TO TURN OFF THEIR VIDEOS. 2520 01:22:41,520 --> 01:22:44,520 PLEASE STAY ON THE ZOOM SO THAT 2521 01:22:44,520 --> 01:22:45,880 WE DON'T HAVE ANY TROUBLE 2522 01:22:45,880 --> 01:22:48,240 GETTING BACK IN FOR TECHNICAL 2523 01:22:48,240 --> 01:22:48,800 REASONS. 2524 01:22:48,800 --> 01:22:51,960 WE'LL SEE YOU ALL IN 10 MINUTES. 2525 01:22:51,960 --> 01:22:52,600 WELCOME BACK. 2526 01:22:52,600 --> 01:22:54,800 IT IS 11:35 AND WE'RE GOING TO 2527 01:22:54,800 --> 01:22:56,600 GET STARTED. 2528 01:22:56,600 --> 01:22:58,720 SUSAN, YOU'RE GOING TO GIVE US 2529 01:22:58,720 --> 01:22:59,880 THE NATIONAL AUTISM COORDINATOR 2530 01:22:59,880 --> 01:23:01,120 UPDATE. 2531 01:23:01,120 --> 01:23:03,160 AS I MENTIONED EARLIER, 2532 01:23:03,160 --> 01:23:04,840 DR. DANIELS IS THE ACTING HHS 2533 01:23:04,840 --> 01:23:06,680 NATIONAL AUTISM COORDINATOR. 2534 01:23:06,680 --> 01:23:07,440 SUSAN, TAKE US AWAY. 2535 01:23:07,440 --> 01:23:09,160 >>THANK YOU. 2536 01:23:09,160 --> 01:23:11,000 SO YES, I WILL BE TAKING YOU 2537 01:23:11,000 --> 01:23:12,000 THROUGH AN UPDATE ABOUT 2538 01:23:12,000 --> 01:23:13,600 ACTIVITIES GOING ON AROUND THE 2539 01:23:13,600 --> 01:23:15,480 FEDERAL GOVERNMENT AND ACROSS 2540 01:23:15,480 --> 01:23:17,240 THE BROADER COMMUNITY JUST TO 2541 01:23:17,240 --> 01:23:19,680 GET US ALL ON THE SAME PAGE. 2542 01:23:19,680 --> 01:23:21,640 SO I'M GOING TO SHARE A FEW 2543 01:23:21,640 --> 01:23:22,440 NON-GOVERNMENTAL UPDATE, 2544 01:23:22,440 --> 01:23:23,880 ALTHOUGH I WILL HAVE TO SAY THAT 2545 01:23:23,880 --> 01:23:25,440 A COUPLE OF THESE ARE FUNDED BY 2546 01:23:25,440 --> 01:23:27,680 FEDERAL SOURCES AND I WILL SHARE 2547 01:23:27,680 --> 01:23:31,640 THAT WITH YOU. 2548 01:23:31,640 --> 01:23:32,920 SO FIRST I WANTED TO MENTION 2549 01:23:32,920 --> 01:23:34,640 THAT THERE'S BEEN THE LAUNCH OF 2550 01:23:34,640 --> 01:23:38,120 A NEW PODCAST CALLED THE BLACK 2551 01:23:38,120 --> 01:23:39,320 FEATHERS PODCAST. 2552 01:23:39,320 --> 01:23:41,280 THIS HAS BEEN FUNDED THROUGH THE 2553 01:23:41,280 --> 01:23:44,400 ACL IN THE STATE OF THE STATES 2554 01:23:44,400 --> 01:23:45,200 AND DEVELOPMENTAL DISABILITIES 2555 01:23:45,200 --> 01:23:45,680 PROJECTS OF NATIONAL 2556 01:23:45,680 --> 01:23:46,000 SIGNIFICANCE. 2557 01:23:46,000 --> 01:23:49,200 AND THIS PODCAST HAS CO-HOST 2558 01:23:49,200 --> 01:23:50,440 CRYSTAL HERNANDEZ, WHO IS THE 2559 01:23:50,440 --> 01:23:52,560 MOTHER OF A CHILD ON THE AUTISM 2560 01:23:52,560 --> 01:23:54,280 SPECTRUM AND A PERSON WHO 2561 01:23:54,280 --> 01:23:59,560 PRACTICES AS A PSYCHOLOGIST, AND 2562 01:23:59,560 --> 01:24:02,080 SHAUNA HUMPHREYS. 2563 01:24:02,080 --> 01:24:03,920 THEY DISCUSS DISABILITY-RELATED 2564 01:24:03,920 --> 01:24:05,840 TOPICS OF INTEREST TO TRIBAL 2565 01:24:05,840 --> 01:24:07,160 COMMUNITIES THROUGH DATA, 2566 01:24:07,160 --> 01:24:08,320 STORYTELLING AND INNOVATIVE 2567 01:24:08,320 --> 01:24:08,880 CONTENT. 2568 01:24:08,880 --> 01:24:11,760 THIS PODCAST EMBRACES DIVERSITY, 2569 01:24:11,760 --> 01:24:13,040 EQUITY AND HONOR WITHIN TRIBAL 2570 01:24:13,040 --> 01:24:14,200 NATIONS SO WE ENCOURAGE YOU TO 2571 01:24:14,200 --> 01:24:15,640 CHECK IT OUT OR PASS IT ALONG TO 2572 01:24:15,640 --> 01:24:19,440 PEOPLE WHO MAY BE INTERESTED. 2573 01:24:19,440 --> 01:24:21,000 ALSO WANT TO MENTION THAT THE 2574 01:24:21,000 --> 01:24:24,640 AUTISM SCIENCE FOUNDATION HAS 2575 01:24:24,640 --> 01:24:26,240 LAUNCHED A DIRECTORY TO HELP 2576 01:24:26,240 --> 01:24:27,680 PEOPLE IN THE AUTISM COMMUNITY 2577 01:24:27,680 --> 01:24:29,040 IDENTIFY STUDIES THEY MIGHT LIKE 2578 01:24:29,040 --> 01:24:29,840 TO PARTICIPATE IN. 2579 01:24:29,840 --> 01:24:31,280 SO WE'VE PROVIDED HERE THE 2580 01:24:31,280 --> 01:24:31,960 INFORMATION ABOUT THAT. 2581 01:24:31,960 --> 01:24:33,320 IT'S ON THEIR WEBSITE AND 2582 01:24:33,320 --> 01:24:34,760 THERE'S A LINK IN THE SLIDE SET 2583 01:24:34,760 --> 01:24:40,520 THAT WILL BE POSTED AFTER THE 2584 01:24:40,520 --> 01:24:41,080 MEETING. 2585 01:24:41,080 --> 01:24:42,080 I ALSO WANTED TO BRING YOUR 2586 01:24:42,080 --> 01:24:43,160 ATTENTION TO A MEETING THAT 2587 01:24:43,160 --> 01:24:44,480 HAPPENED OVER THE SUMMER THAT 2588 01:24:44,480 --> 01:24:47,560 WAS SPONSORED BY AUTISM SPEAKS. 2589 01:24:47,560 --> 01:24:48,560 THEIR THOUGHT LEADERSHIP SUMMIT 2590 01:24:48,560 --> 01:24:50,040 ON AUTISM AND AGING WHICH 2591 01:24:50,040 --> 01:24:51,040 RELATES TO SOME OF THE CONTENT 2592 01:24:51,040 --> 01:24:52,200 WE'RE GOING TO TALK ABOUT IN THE 2593 01:24:52,200 --> 01:24:52,600 AFTERNOON. 2594 01:24:52,600 --> 01:24:54,760 AND SO IN JUNE, AUTISM SPEAKS 2595 01:24:54,760 --> 01:24:55,960 HOSTED THE SUMMIT, BRINGING 2596 01:24:55,960 --> 01:24:58,600 TOGETHER FAMILIES, AUTISTIC 2597 01:24:58,600 --> 01:24:59,840 ADULTS, RESEARCHERS AND POLICY 2598 01:24:59,840 --> 01:25:01,720 MAKERS TO DISCUSS ISSUES FACING 2599 01:25:01,720 --> 01:25:03,600 AUTISTIC ADULTS AS THEY AGE. 2600 01:25:03,600 --> 01:25:05,720 AND THIS WAS AN INTERESTING 2601 01:25:05,720 --> 01:25:06,960 MEETING. 2602 01:25:06,960 --> 01:25:10,800 WE HAVE A PHOTO HERE OF CHRIS 2603 01:25:10,800 --> 01:25:12,040 SMITH, OUR CONGRESSMAN WHO SPOKE 2604 01:25:12,040 --> 01:25:14,720 AT THE MEETING. 2605 01:25:14,720 --> 01:25:15,600 WE'D ENCOURAGE YOU TO CHECK IT 2606 01:25:15,600 --> 01:25:16,280 OUT. 2607 01:25:16,280 --> 01:25:17,480 THE LINK IS PROVIDED HERE AND IT 2608 01:25:17,480 --> 01:25:19,200 ON THEIR WEBSITE TOO, IF YOU'D 2609 01:25:19,200 --> 01:25:23,600 LIKE TO WATCH THAT MEETING. 2610 01:25:23,600 --> 01:25:26,040 AND JUST YESTERDAY, THE STANFORD 2611 01:25:26,040 --> 01:25:27,080 NEURODIVERSITY SUMMIT ENDED, BUT 2612 01:25:27,080 --> 01:25:28,360 WANTED TO BRING THAT TO YOUR 2613 01:25:28,360 --> 01:25:29,600 ATTENTION TO THOSE WHO MIGHT BE 2614 01:25:29,600 --> 01:25:33,200 INTERESTED IN THIS 2615 01:25:33,200 --> 01:25:33,760 NEURODIVERSITY SUMMIT. 2616 01:25:33,760 --> 01:25:35,480 IT WAS AVAILABLE FOR A NOMINAL 2617 01:25:35,480 --> 01:25:35,720 FEE. 2618 01:25:35,720 --> 01:25:38,240 I KNOW THAT THEY'RE GOING TO BE 2619 01:25:38,240 --> 01:25:39,880 POSTING THE VIDEOS ONLINE. 2620 01:25:39,880 --> 01:25:41,440 I'M NOT SURE IF YOU HAVE TO PAY 2621 01:25:41,440 --> 01:25:43,160 THE NOMINAL FEE TO SEE THE 2622 01:25:43,160 --> 01:25:44,400 VIDEOS OR IF THEY'LL BE POSTED 2623 01:25:44,400 --> 01:25:45,800 FOR FREE, BUT THE EVENT DETAILS 2624 01:25:45,800 --> 01:25:47,120 ARE ON THIS LINK AND IF YOU GO 2625 01:25:47,120 --> 01:25:48,640 TO THEIR WEBSITE, YOU CAN FIND 2626 01:25:48,640 --> 01:25:49,800 IT, BUT MANY OF YOU MAY BE 2627 01:25:49,800 --> 01:25:56,920 INTERESTED IN THAT AS WELL. 2628 01:25:56,920 --> 01:25:59,080 I WANTED TO MENTION IS THAT 2629 01:25:59,080 --> 01:26:01,320 UPCOMING IS HEALTH EQUITY, 2630 01:26:01,320 --> 01:26:02,480 SERVING THE WHOLE PERSON, THIS 2631 01:26:02,480 --> 01:26:04,240 IS GOING TO FEATURE SOME OF THE 2632 01:26:04,240 --> 01:26:08,200 RESEARCH FUNDED BY ACL, HRSA AND 2633 01:26:08,200 --> 01:26:11,880 NIH, SEVERAL DIFFERENT UCEDDs, 2634 01:26:11,880 --> 01:26:15,680 LEND PROGRAMS, IDDRCs AND THE 2635 01:26:15,680 --> 01:26:16,640 DEVELOPMENTAL BEHAVIORAL 2636 01:26:16,640 --> 01:26:17,240 PEDIATRICS PROGRAM. 2637 01:26:17,240 --> 01:26:18,320 SO PLEASE CHECK IT OUT IF YOU 2638 01:26:18,320 --> 01:26:20,280 ARE INTERESTED AND THE 2639 01:26:20,280 --> 01:26:20,840 CONFERENCE SCHEDULE AND 2640 01:26:20,840 --> 01:26:21,600 REGISTRATION DETAILS ARE 2641 01:26:21,600 --> 01:26:23,160 AVAILABLE ON THIS LINK THAT'S 2642 01:26:23,160 --> 01:26:25,960 PROVIDED. 2643 01:26:25,960 --> 01:26:27,960 SO NOW I'M GOING TO SHARE SOME 2644 01:26:27,960 --> 01:26:32,440 FEDERAL UPDATES. 2645 01:26:32,440 --> 01:26:34,480 SO FIRST, JUST RECAPPING WHAT WE 2646 01:26:34,480 --> 01:26:45,040 HEARD THIS MORNING FR. 2647 01:26:50,160 --> 01:26:51,440 THE PRESIDENTIAL PROCLAMATION IS 2648 01:26:51,440 --> 01:26:52,040 LINKED HERE. 2649 01:26:52,040 --> 01:26:53,720 OUR OFFICE, THE OFFICE OF 2650 01:26:53,720 --> 01:26:55,560 RESEARCH COORDINATION AND ON THE 2651 01:26:55,560 --> 01:26:58,880 IACC WEBSITE HAS A PAGE FOR 2652 01:26:58,880 --> 01:27:00,360 NDEAM WHERE WE'VE LISTED A LOT 2653 01:27:00,360 --> 01:27:01,680 OF DIFFERENT EVENTS AND NEWS 2654 01:27:01,680 --> 01:27:03,280 ITEMS FROM AROUND THE COUNTRY 2655 01:27:03,280 --> 01:27:05,200 ABOUT NDEAM, SO YOU CAN GO THERE 2656 01:27:05,200 --> 01:27:06,840 AND PROBABLY FIND VIDEOS AS WELL 2657 01:27:06,840 --> 01:27:08,000 FOR THINGS THAT HAVE ALREADY 2658 01:27:08,000 --> 01:27:11,160 HAPPENED, AND THE DEPARTMENT OF 2659 01:27:11,160 --> 01:27:12,520 LABOR'S NDEAM PAGE IS ALSO 2660 01:27:12,520 --> 01:27:12,840 LINKED HERE. 2661 01:27:12,840 --> 01:27:14,080 SO WE'D ENCOURAGE YOU TO CHECK 2662 01:27:14,080 --> 01:27:15,600 THAT OUT TO SEE WHAT'S BEEN 2663 01:27:15,600 --> 01:27:17,600 GOING ON WITH THAT OVER THIS 2664 01:27:17,600 --> 01:27:28,120 PAST MONTH. AND IT'S RESULTED IN 2665 01:28:45,240 --> 01:28:46,720 MULTIPLE WORKING GROUPS, 2666 01:28:46,720 --> 01:28:47,720 COMMITTEES, INITIATIVES, 2667 01:28:47,720 --> 01:28:49,120 REPORTS, AND SO THEY'RE COMING 2668 01:28:49,120 --> 01:28:50,800 OUT AT A FAIRLY FAST CLIP. 2669 01:28:50,800 --> 01:28:52,640 I WILL TRY TO IN THESE UPDATES 2670 01:28:52,640 --> 01:28:54,680 FROM TIME TO TIMESHARE SOME OF 2671 01:28:54,680 --> 01:28:55,720 THE IMPORTANT REPORTS THAT ARE 2672 01:28:55,720 --> 01:28:57,360 COMING OUT THAT DO INCLUDE 2673 01:28:57,360 --> 01:28:59,240 INFORMATION ABOUT PEOPLE WITH 2674 01:28:59,240 --> 01:28:59,920 DISABILITIES. 2675 01:28:59,920 --> 01:29:01,960 BUT IT'S ALSO CREATING NEW 2676 01:29:01,960 --> 01:29:03,200 OPPORTUNITIES FOR DISABILITY, 2677 01:29:03,200 --> 01:29:04,720 DISABILITY EMPLOYMENT, AND 2678 01:29:04,720 --> 01:29:06,880 NEURODIVERSITY INITIATIVES, AS 2679 01:29:06,880 --> 01:29:08,240 WELL AS CONSIDERATION OF ISSUES 2680 01:29:08,240 --> 01:29:11,240 OF INTERSECTIONALITY WITH RACE, 2681 01:29:11,240 --> 01:29:20,160 GENDER AND OTHER CATEGORIES. 2682 01:29:20,160 --> 01:29:22,040 SO RECENTLY, APRIL 2022, BECAUSE 2683 01:29:22,040 --> 01:29:23,440 WE LAST MET THEN, THERE WAS A 2684 01:29:23,440 --> 01:29:25,560 REPORT THAT WAS PUT OUT BY THE 2685 01:29:25,560 --> 01:29:27,640 EQUITABLE DATA WORKING GROUP 2686 01:29:27,640 --> 01:29:31,880 BASED ON THE EXECUTIVE ORDER 2687 01:29:31,880 --> 01:29:34,320 13985, AND THIS REPORT TALKS 2688 01:29:34,320 --> 01:29:37,720 ABOUT USING DATA THAT THE 2689 01:29:37,720 --> 01:29:38,600 FEDERAL GOVERNMENT IS COLLECTING 2690 01:29:38,600 --> 01:29:40,120 TO HELP SERVE PEOPLE FROM 2691 01:29:40,120 --> 01:29:41,360 UNDERSERVED GROUPS. 2692 01:29:41,360 --> 01:29:43,160 AND HOW WE CAN COLLECT BETTER 2693 01:29:43,160 --> 01:29:46,520 DATA AND ENHANCE OUR DATA 2694 01:29:46,520 --> 01:29:46,760 RESOURCES. 2695 01:29:46,760 --> 01:29:49,560 AND SO THIS REPORT INCLUDES 2696 01:29:49,560 --> 01:29:50,960 INFORMATION ABOUT DATA ON PEOPLE 2697 01:29:50,960 --> 01:29:53,320 WITH DISABILITIES, AND THE LINK 2698 01:29:53,320 --> 01:29:54,520 IS PROVIDED HERE IF YOU'RE 2699 01:29:54,520 --> 01:29:59,560 INTERESTED IN CHECKING OUT THAT 2700 01:29:59,560 --> 01:30:00,360 REPORT. 2701 01:30:00,360 --> 01:30:01,120 LAST YEAR I DIDN'T REPORT OUT 2702 01:30:01,120 --> 01:30:02,560 THIS REPORT IN THE IACC MEETING 2703 01:30:02,560 --> 01:30:03,480 BUT THERE WAS ANOTHER REPORT 2704 01:30:03,480 --> 01:30:05,080 THAT CAME OUT, THE 2705 01:30:05,080 --> 01:30:06,400 GOVERNMENT-WIDE STRATEGIC PLAN 2706 01:30:06,400 --> 01:30:07,480 TO ADVANCE DIVERSITY, ECK WITH 2707 01:30:07,480 --> 01:30:12,880 EQUITY,INCLUSION AND ACCESS IBI. 2708 01:30:12,880 --> 01:30:13,760 I'D ENCOURAGE YOU TO CHECK THAT 2709 01:30:13,760 --> 01:30:14,120 OUT. 2710 01:30:14,120 --> 01:30:15,440 IT TALKS MORE ABOUT THE STRATEGY 2711 01:30:15,440 --> 01:30:16,520 FOR THE ENTIRE FEDERAL 2712 01:30:16,520 --> 01:30:17,760 GOVERNMENT AS THE NATION'S 2713 01:30:17,760 --> 01:30:20,480 LARGEST EMPLOYER TO ENHANCE ITS 2714 01:30:20,480 --> 01:30:22,560 INCLUSION OF UNDERSERVED GROUPS 2715 01:30:22,560 --> 01:30:24,000 IN THE FEDERAL WORKFORCE AND HOW 2716 01:30:24,000 --> 01:30:26,080 TO BETTER ACCOMMODATE AND 2717 01:30:26,080 --> 01:30:27,200 STRENGTHEN THE WORK THAT WE'RE 2718 01:30:27,200 --> 01:30:35,840 DOING TOGETHER. 2719 01:30:35,840 --> 01:30:37,040 SO WITH THAT, I'LL MOVE ON TO 2720 01:30:37,040 --> 01:30:38,680 THE NEXT ITEM, WHICH IS A REPORT 2721 01:30:38,680 --> 01:30:44,080 THAT CAME OUT RECENTLY ON 2722 01:30:44,080 --> 01:30:45,520 IMPROVING INFRASTRUCTURE FOR 2723 01:30:45,520 --> 01:30:50,200 PEOPLE WITH ID DLSH DD, THIS WAS 2724 01:30:50,200 --> 01:30:51,080 DEVELOPED BY THE ASSISTANT 2725 01:30:51,080 --> 01:30:54,600 SECRETARY FOR PLANNING AND 2726 01:30:54,600 --> 01:30:56,360 EVALUATION AT THE U.S. 2727 01:30:56,360 --> 01:30:58,800 DEPARTMENT OF HEALTH AND HUMAN 2728 01:30:58,800 --> 01:30:59,040 SERVICES. 2729 01:30:59,040 --> 01:31:00,480 THIS IS ON SHORT-TERM 2730 01:31:00,480 --> 01:31:02,840 OPPORTUNITIES FOR IMPROVING 2731 01:31:02,840 --> 01:31:04,040 PATIENT-CENTERED OUTCOMES 2732 01:31:04,040 --> 01:31:06,800 RESEARCH DATA INFRASTRUCTURE 2733 01:31:06,800 --> 01:31:07,760 THAT ADDRESSES NEEDS OF 2734 01:31:07,760 --> 01:31:09,560 INDIVIDUALS WITH INTELLECTUAL 2735 01:31:09,560 --> 01:31:10,320 AND DEVELOPMENTAL DISABILITIES, 2736 01:31:10,320 --> 01:31:11,520 SO I'VE PROVIDED THE LINK WHERE 2737 01:31:11,520 --> 01:31:12,600 YOU CAN DOWNLOAD IF YOU'RE 2738 01:31:12,600 --> 01:31:13,280 INTERESTED IN THAT. 2739 01:31:13,280 --> 01:31:14,720 AND WE WILL HEAR A LITTLE BIT 2740 01:31:14,720 --> 01:31:16,680 MORE FROM ALICE LATER IN THE 2741 01:31:16,680 --> 01:31:18,560 ROUND ROBIN, BUT NIH MADE A 2742 01:31:18,560 --> 01:31:20,760 LARGE AWARD OF $100 MILLION NOT 2743 01:31:20,760 --> 01:31:23,280 TO ONE PLACE BUT FOR SEVERAL 2744 01:31:23,280 --> 01:31:24,920 AWARDS, FOR NINE DIFFERENT 2745 01:31:24,920 --> 01:31:26,280 AWARDS UNDER THE AUTISM CENTERS 2746 01:31:26,280 --> 01:31:28,000 OF EXCELLENCE PROGRAM. 2747 01:31:28,000 --> 01:31:29,120 AND WE'VE LINKED HERE TO THE 2748 01:31:29,120 --> 01:31:32,720 PRESS RELEASE ABOUT THAT. 2749 01:31:32,720 --> 01:31:34,200 AND YOU WILL HEAR MORE FROM 2750 01:31:34,200 --> 01:31:35,800 NICHD, AND THIS PROGRAM IS 2751 01:31:35,800 --> 01:31:40,040 SUPPORTED BY NICHD, NIMH, NIEHS, 2752 01:31:40,040 --> 01:31:41,440 NIDCD AND NINDS THAT ARE ALL ON 2753 01:31:41,440 --> 01:31:46,240 THIS COMMITTEE. 2754 01:31:46,240 --> 01:31:50,320 ALSO WITH THE AGENCY FOR 2755 01:31:50,320 --> 01:31:51,200 RESEARCH -- THEY'RE SEEKING 2756 01:31:51,200 --> 01:31:53,600 INPUT ABOUT PERSON-CENTERED CARE 2757 01:31:53,600 --> 01:31:55,240 FOR PEOPLE AT RISK FOR OR LIVING 2758 01:31:55,240 --> 01:31:57,120 WITH MULTIPLE CHRONIC 2759 01:31:57,120 --> 01:31:57,920 CONDITIONS. 2760 01:31:57,920 --> 01:31:59,960 AND COMMENTS ARE DUE BY NOVEMBE. 2761 01:31:59,960 --> 01:32:01,160 THOSE OF YOU WHO WOULD BE 2762 01:32:01,160 --> 01:32:02,400 INTERESTED IN THAT, THERE IS 2763 01:32:02,400 --> 01:32:03,560 MORE INFORMATION AVAILABLE 2764 01:32:03,560 --> 01:32:04,800 ONLINE AND WE HAVE A LINK FOR 2765 01:32:04,800 --> 01:32:05,600 THAT. 2766 01:32:05,600 --> 01:32:08,320 AND THIS WILL INFORM THEIR WORK 2767 01:32:08,320 --> 01:32:14,840 AS AN AGENCY AND THEIR RESEARCH 2768 01:32:14,840 --> 01:32:15,440 AGENDA. 2769 01:32:15,440 --> 01:32:16,800 THE INTERAGENCY COMMITTEE ON 2770 01:32:16,800 --> 01:32:18,080 DISABILITY RESEARCH ALSO HAS HAD 2771 01:32:18,080 --> 01:32:20,000 A NUMBER OF DIFFERENT ACTIVITIES 2772 01:32:20,000 --> 01:32:20,960 RECENTLY, INCLUDING THE RELEASE 2773 01:32:20,960 --> 01:32:23,160 OF A NEW TOOLKIT, GETTING THE 2774 01:32:23,160 --> 01:32:25,080 MOST OUT OF STAKEHOLDER 2775 01:32:25,080 --> 01:32:25,920 ENGAGEMENT, WHICH IS A TOOLKIT 2776 01:32:25,920 --> 01:32:29,200 TO BETTER UNDERSTAND AND MEASURE 2777 01:32:29,200 --> 01:32:30,120 ENGAGEMENT WITH PEOPLE ACROSS 2778 01:32:30,120 --> 01:32:31,880 THE COMMUNITY. 2779 01:32:31,880 --> 01:32:33,400 AND THE LINK IS THERE FOR THAT 2780 01:32:33,400 --> 01:32:34,960 AND THEY ALSO HAVE HELD A NUMBER 2781 01:32:34,960 --> 01:32:36,920 OF LUNCH AND LEARN WEBINARS, AND 2782 01:32:36,920 --> 01:32:38,400 ONE THAT IS LINKED HERE 2783 01:32:38,400 --> 01:32:40,360 UNDERSTANDING AND RESPONDING TO 2784 01:32:40,360 --> 01:32:41,400 CULTURAL AND LINGUISTIC 2785 01:32:41,400 --> 01:32:43,160 DIFFERENCES IN THE CONDUCT OF 2786 01:32:43,160 --> 01:32:44,520 DISABILITY RESEARCH WITH 2787 01:32:44,520 --> 01:32:47,080 PROFESSOR TAWARA GOODE IS ONE 2788 01:32:47,080 --> 01:32:48,080 THAT I ACTUALLY HAD THE 2789 01:32:48,080 --> 01:32:49,320 PRIVILEGE OF MODERATING AND WAS 2790 01:32:49,320 --> 01:32:51,480 AN EXCELLENT WEBINAR, AND I'D 2791 01:32:51,480 --> 01:32:52,840 ENCOURAGE ANYONE WHO'S 2792 01:32:52,840 --> 01:32:53,880 INTERESTED IN INTERSECTIONALITY 2793 01:32:53,880 --> 01:32:55,440 BETWEEN DISABILITIES AND OTHER 2794 01:32:55,440 --> 01:33:02,240 CATEGORIES TO WATCH THAT 2795 01:33:02,240 --> 01:33:02,920 WEBINAR. 2796 01:33:02,920 --> 01:33:05,120 THE RAISE FAMILY CAREGIVERS 2797 01:33:05,120 --> 01:33:06,040 ADVISORY COUNCIL IS OF INTEREST 2798 01:33:06,040 --> 01:33:07,400 TO PEOPLE ON THIS COMMITTEE, 2799 01:33:07,400 --> 01:33:08,760 ESPECIALLY WITH CONCERN TO 2800 01:33:08,760 --> 01:33:10,400 FAMILY CAREGIVERS OF PEOPLE WITH 2801 01:33:10,400 --> 01:33:11,600 DISABILITIES, AND THEY RECENTLY 2802 01:33:11,600 --> 01:33:13,440 HAD PUBLISHED THEIR 2022 2803 01:33:13,440 --> 01:33:15,600 NATIONAL STRATEGY TO SUPPORT 2804 01:33:15,600 --> 01:33:17,160 FAMILY CAREGIVERS, AND THEY PUT 2805 01:33:17,160 --> 01:33:19,840 THE COMPLETED NATIONAL STRATEGY 2806 01:33:19,840 --> 01:33:22,040 UP ONLINE FOR PEOPLE TO ACCESS 2807 01:33:22,040 --> 01:33:24,080 AND TO ALSO PROVIDE PUBLIC 2808 01:33:24,080 --> 01:33:25,000 COMMENT THROUGH NOVEMBER 30TH, 2809 01:33:25,000 --> 01:33:26,080 AND I'D REALLY ENCOURAGE PEOPLE 2810 01:33:26,080 --> 01:33:27,720 FROM THIS COMMITTEE WHO ARE 2811 01:33:27,720 --> 01:33:28,840 INTERESTED IN CAREGIVER ISSUES 2812 01:33:28,840 --> 01:33:30,480 TO LOOK AT THIS AND SUBMIT THEIR 2813 01:33:30,480 --> 01:33:34,600 PUBLIC COMMENTS ON THIS REPORT. 2814 01:33:34,600 --> 01:33:37,960 AND THE COMMENTS WILL BE USED TO 2815 01:33:37,960 --> 01:33:38,840 CONTINUE -- THEIR REPORT WILL 2816 01:33:38,840 --> 01:33:40,360 CONTINUE TO BE A LIVING 2817 01:33:40,360 --> 01:33:41,280 DOCUMENT, THEY'LL CONTINUE 2818 01:33:41,280 --> 01:33:42,360 UPDATING IT AND THEY'RE ALSO 2819 01:33:42,360 --> 01:33:44,240 CONNECTING WITH THE SUPPORT 2820 01:33:44,240 --> 01:33:45,360 GRANDPARENTS RAISING 2821 01:33:45,360 --> 01:33:46,120 GRANDCHILDREN COUNCIL ON THEIR 2822 01:33:46,120 --> 01:33:53,840 EFFORTS. 2823 01:33:53,840 --> 01:33:56,080 THE FEDERAL PARTNERS IN 2824 01:33:56,080 --> 01:33:57,640 TRANSITION IS ANOTHER FEDERAL 2825 01:33:57,640 --> 01:33:59,680 WORK GROUP MANAGED BY THE 2826 01:33:59,680 --> 01:34:00,120 DEPARTMENT OF LABOR. 2827 01:34:00,120 --> 01:34:01,720 THIS IS FOCUSED ON YOUTH WITH 2828 01:34:01,720 --> 01:34:02,920 DISABILITIES AND THEY ARE DOING 2829 01:34:02,920 --> 01:34:04,920 A NUMBER OF THINGS INCLUDING 2830 01:34:04,920 --> 01:34:05,920 CONTINUING TO WORK ON THEIR 2831 01:34:05,920 --> 01:34:07,120 STRATEGIC PLAN. 2832 01:34:07,120 --> 01:34:09,320 THEY JUST HELD A MY FUTURE 2833 01:34:09,320 --> 01:34:09,720 MATTERS SYMPOSIUM. 2834 01:34:09,720 --> 01:34:10,760 THIS WAS AN IN-PERSON. 2835 01:34:10,760 --> 01:34:11,760 I DON'T BELIEVE THERE IS A 2836 01:34:11,760 --> 01:34:12,960 RECORDING OF IT, BUT WE CAN 2837 01:34:12,960 --> 01:34:14,360 ALWAYS CHECK IN WITH DEPARTMENT 2838 01:34:14,360 --> 01:34:15,760 OF LABOR TO SEE IF THERE IS ANY 2839 01:34:15,760 --> 01:34:17,800 INFORMATION ABOUT IT. 2840 01:34:17,800 --> 01:34:19,240 BUT THAT WAS A RECENT EVENT THAT 2841 01:34:19,240 --> 01:34:20,480 THEY HELD AND THEY ARE 2842 01:34:20,480 --> 01:34:21,920 CONTINUING TO WORK ACTIVELY ON 2843 01:34:21,920 --> 01:34:26,240 THEIR STRATEGIC PLAN. 2844 01:34:26,240 --> 01:34:27,080 THE PRESIDENT'S COMMITTEE FOR 2845 01:34:27,080 --> 01:34:28,920 PEOPLE WITH INTELLECTUAL 2846 01:34:28,920 --> 01:34:31,880 DISABILITIES, OR P CPID, HELD 2847 01:34:31,880 --> 01:34:32,760 THEIR FIRST MEETING IN THE 2848 01:34:32,760 --> 01:34:33,840 SUMMER, IN JULY, AND DISCUSSED 2849 01:34:33,840 --> 01:34:37,320 HOME AND COMMUNITY-BASED 2850 01:34:37,320 --> 01:34:38,520 SERVICES, EMPLOYMENT, EDUCATION, 2851 01:34:38,520 --> 01:34:40,320 HOUSING AND DIRECT SUPPORT 2852 01:34:40,320 --> 01:34:40,840 PROFESSIONAL WORKFORCE. 2853 01:34:40,840 --> 01:34:43,120 SO THE MEETING MATERIALS ARE 2854 01:34:43,120 --> 01:34:44,480 PROVIDED ON THEIR WEBSITE FOR 2855 01:34:44,480 --> 01:34:46,160 PEOPLE WHO WANT TO FOLLOW THAT, 2856 01:34:46,160 --> 01:34:47,120 AND THANK YOU FOR BEARING WITH 2857 01:34:47,120 --> 01:34:48,120 ME WITH ALL THESE. 2858 01:34:48,120 --> 01:34:50,720 I JUST WANT YOU ALL TO BE AWARE 2859 01:34:50,720 --> 01:34:51,760 OF THE BREADTH OF ALL THE 2860 01:34:51,760 --> 01:34:52,760 DIFFERENT EFFORTS GOING ON 2861 01:34:52,760 --> 01:34:53,760 ACROSS THE GOVERNMENT, BECAUSE 2862 01:34:53,760 --> 01:34:55,160 WE ARE TRYING TO STAY 2863 01:34:55,160 --> 01:34:57,720 COORDINATED AND NOT BE 2864 01:34:57,720 --> 01:34:58,040 DUPLICATIVE. 2865 01:34:58,040 --> 01:34:58,600 THE NATIONAL COUNCIL ON 2866 01:34:58,600 --> 01:35:00,360 DISABILITY, WITH I IS AN 2867 01:35:00,360 --> 01:35:01,920 INDEPENDENT FEDERAL AGENCY 2868 01:35:01,920 --> 01:35:03,560 FOCUSED ON DISABILITY, THEY JUST 2869 01:35:03,560 --> 01:35:05,000 HELD THEIR QUARTERLY BUSINESS 2870 01:35:05,000 --> 01:35:07,920 MEETING AND THEY DIDN'T HAVE 2871 01:35:07,920 --> 01:35:08,840 ANYTHING THAT WAS HIGHLY 2872 01:35:08,840 --> 01:35:10,280 RELEVANT TO OUR COMMITTEE RIGHT 2873 01:35:10,280 --> 01:35:11,600 NOW, BUT WE LIKE TO KEEP YOU 2874 01:35:11,600 --> 01:35:14,880 POSTED ON THAT. 2875 01:35:14,880 --> 01:35:16,680 SAME WITH SOME OF THESE OTHER 2876 01:35:16,680 --> 01:35:17,320 COMMITTEES. 2877 01:35:17,320 --> 01:35:19,360 THE ISMIC HAS A MEETING COMING 2878 01:35:19,360 --> 01:35:20,600 UP LATER THIS WEEK. 2879 01:35:20,600 --> 01:35:22,760 AND THEIR AGENDA IS UP. 2880 01:35:22,760 --> 01:35:23,600 THE DISABILITY ADVISORY 2881 01:35:23,600 --> 01:35:26,080 COMMITTEE OF THE FEDERAL 2882 01:35:26,080 --> 01:35:27,200 COMMUNICATIONS COMMISSION IS 2883 01:35:27,200 --> 01:35:33,040 ALSO GOING TO BE HELD SHORTLY ON 2884 01:35:33,040 --> 01:35:34,400 NOVEMBER 1ST. 2885 01:35:34,400 --> 01:35:37,760 AND THE NATIONAL ADVISORY 2886 01:35:37,760 --> 01:35:39,840 COMMITTEE ON INDIVIDUALS WITH 2887 01:35:39,840 --> 01:35:41,520 DISABILITIES AND DISASTERS, 2888 01:35:41,520 --> 01:35:43,320 WANTED TO MAKE SURE YOU GOT AN 2889 01:35:43,320 --> 01:35:43,840 UPDATE ON THEM. 2890 01:35:43,840 --> 01:35:46,080 THEY HAD A MEETING ON 2891 01:35:46,080 --> 01:35:47,040 AUGUST 4TH, AND WE WILL CONTINUE 2892 01:35:47,040 --> 01:35:48,480 TO KEEP TABS ON THEM AND MAKE 2893 01:35:48,480 --> 01:35:50,200 SURE WE'RE COORDINATING ON ANY 2894 01:35:50,200 --> 01:35:51,560 INFORMATION ABOUT PEOPLE WITH 2895 01:35:51,560 --> 01:35:55,600 DISABILITIES I AND DISASTERS. 2896 01:35:55,600 --> 01:35:57,080 SO WITH THAT, I AM FINISHED WITH 2897 01:35:57,080 --> 01:35:58,840 THE UPDATE FROM THE NATIONAL 2898 01:35:58,840 --> 01:36:00,040 AUTISM COORDINATOR AS THE ACTING 2899 01:36:00,040 --> 01:36:02,400 NATIONAL AUTISM COORDINATOR. 2900 01:36:02,400 --> 01:36:03,680 ARE THERE ANY QUESTIONS BEFORE 2901 01:36:03,680 --> 01:36:05,560 WE MOVE ON? 2902 01:36:05,560 --> 01:36:06,440 TO THE NEXT SECTION 2903 01:36:06,440 --> 01:36:16,240 OF OUR MEETING? 2904 01:36:16,240 --> 01:36:17,320 OKAY, NOT HEARING ANY, SO 2905 01:36:17,320 --> 01:36:18,200 HOPEFULLY THAT WAS CLEAR AND THE 2906 01:36:18,200 --> 01:36:19,160 SLIDES WILL BE AVAILABLE. 2907 01:36:19,160 --> 01:36:21,320 AND I HOPE THAT THAT LIVES YOU A 2908 01:36:21,320 --> 01:36:22,160 SENSE OF ALL THE DIFFERENT 2909 01:36:22,160 --> 01:36:23,280 EFFORTS THAT ARE GOING ON AND 2910 01:36:23,280 --> 01:36:25,880 WE'RE TRYING TO MAKE SURE THAT 2911 01:36:25,880 --> 01:36:27,240 WE ARE KEEPING TABS ON THINGS 2912 01:36:27,240 --> 01:36:28,880 THAT ARE REALLY IMPORTANT TO OUR 2913 01:36:28,880 --> 01:36:29,960 COMMITTEE AND THE WORK THAT 2914 01:36:29,960 --> 01:36:31,560 WE'RE DOING ON OUR STRATEGIC 2915 01:36:31,560 --> 01:36:32,120 PLAN. 2916 01:36:32,120 --> 01:36:33,320 SO THEN I'LL GO AHEAD AND MOVE 2917 01:36:33,320 --> 01:36:37,040 INTO THE COMMITTEE BUSINESS FOR 2918 01:36:37,040 --> 01:36:37,240 TODAY. 2919 01:36:37,240 --> 01:36:38,960 SO I'M GOING TO GIVE YOU AN 2920 01:36:38,960 --> 01:36:41,120 UPDATE ON THE IACC PORTFOLIO 2921 01:36:41,120 --> 01:36:42,880 ANALYSIS, THE IACC SUMMARY OF 2922 01:36:42,880 --> 01:36:44,320 ADVANCES PROJECTS, AND THEN 2923 01:36:44,320 --> 01:36:45,720 WE'LL MOVE INTO A DISCUSSION OF 2924 01:36:45,720 --> 01:36:50,840 THE IACC STRATEGIC PLAN. 2925 01:36:50,840 --> 01:36:52,840 SO FIRST OFF, AN UPDATE ON THE 2926 01:36:52,840 --> 01:36:54,920 IACC PORTFOLIO ANALYSIS REPORT, 2927 01:36:54,920 --> 01:36:57,320 WHICH YOU ALL KNOW IS A REPORT 2928 01:36:57,320 --> 01:36:59,160 THAT PROVIDES COMPREHENSIVE 2929 01:36:59,160 --> 01:37:00,160 INFORMATION ABOUT AUTISM 2930 01:37:00,160 --> 01:37:01,960 RESEARCH FUNDING FROM ACROSS 2931 01:37:01,960 --> 01:37:03,560 FEDERAL AGENCIES AND PRIVATE 2932 01:37:03,560 --> 01:37:04,600 RESEARCH ORGANIZATIONS IN THE 2933 01:37:04,600 --> 01:37:06,840 U.S. 2934 01:37:06,840 --> 01:37:09,760 AND WE ALSO TRACK PROGRESS ON 2935 01:37:09,760 --> 01:37:13,920 THE STRATEGIC PLAN OBJECTIVES OR 2936 01:37:13,920 --> 01:37:14,880 RECOMMENDATIONS IN OUR STRATEGIC 2937 01:37:14,880 --> 01:37:15,680 PLAN. 2938 01:37:15,680 --> 01:37:17,880 WE ALSO PROVIDE ANALYSIS OF 2939 01:37:17,880 --> 01:37:18,760 FUNDING TRENDS OVER TIME, AND 2940 01:37:18,760 --> 01:37:20,200 WE'VE BEEN TRACKING THIS 2941 01:37:20,200 --> 01:37:21,480 INFORMATION FOR MANY YEARS, AND 2942 01:37:21,480 --> 01:37:24,520 SO WE DO SOME COMPARISON AND 2943 01:37:24,520 --> 01:37:26,520 PROVIDE TRENDS. 2944 01:37:26,520 --> 01:37:28,320 AND WE ALSO PROVIDE PROGRESS 2945 01:37:28,320 --> 01:37:29,720 TOWARD THE BUDGET RECOMMENDATION 2946 01:37:29,720 --> 01:37:32,360 IN THE STRATEGIC PLAN. 2947 01:37:32,360 --> 01:37:34,400 SO WE ARE CURRENTLY IN THE 2948 01:37:34,400 --> 01:37:36,520 PROCESS OF THE FINAL STAGES OF 2949 01:37:36,520 --> 01:37:39,600 PREPARING THE 2019 AND 2020 IACC 2950 01:37:39,600 --> 01:37:40,600 PORTFOLIO ANALYSIS REPORT, AND 2951 01:37:40,600 --> 01:37:41,520 OUR PLAN WILL BE TO PRESENT THIS 2952 01:37:41,520 --> 01:37:43,440 TO YOU IN JANUARY SO YOU CAN SEE 2953 01:37:43,440 --> 01:37:46,200 THE RESULTS OF THIS REPORT, AND 2954 01:37:46,200 --> 01:37:47,320 THERE ARE SOME REALLY 2955 01:37:47,320 --> 01:37:48,520 INTERESTING FINDINGS THAT ARE A 2956 01:37:48,520 --> 01:37:49,640 LITTLE DIFFERENT FROM PREVIOUS 2957 01:37:49,640 --> 01:37:51,480 YEARS AND WE ARE LOOKING FORWARD 2958 01:37:51,480 --> 01:37:53,320 TO SHARING THAT WITH YOU AT THE 2959 01:37:53,320 --> 01:37:56,440 JANUARY MEETING. 2960 01:37:56,440 --> 01:37:57,960 AND WE HAVE ALSO LAUNCHED THE 2961 01:37:57,960 --> 01:38:00,320 DATA CALL FOR THE 2021 IACC 2962 01:38:00,320 --> 01:38:01,920 PORTFOLIO ANALYSIS REPORT, AND 2963 01:38:01,920 --> 01:38:02,720 APPRECIATE DIFFERENT FEDERAL 2964 01:38:02,720 --> 01:38:04,040 AGENCIES AND PRIVATE 2965 01:38:04,040 --> 01:38:05,000 ORGANIZATIONS THAT HAVE SHARED 2966 01:38:05,000 --> 01:38:07,800 THEIR DATA WITH US, AND WE WILL 2967 01:38:07,800 --> 01:38:08,680 CONTINUE TO COLLECT THAT 2968 01:38:08,680 --> 01:38:10,640 INFORMATION AND WORK ON THE NEXT 2969 01:38:10,640 --> 01:38:10,880 REPORT. 2970 01:38:10,880 --> 01:38:11,600 SO WE ALWAYS HAVE THEM IN 2971 01:38:11,600 --> 01:38:19,240 PROGRESS. 2972 01:38:19,240 --> 01:38:20,440 NEXT LET'S TALK ABOUT THE IACC 2973 01:38:20,440 --> 01:38:22,040 SUMMARY OF ADVANCES. 2974 01:38:22,040 --> 01:38:24,280 SO SINCE WE LAST MET, WE 2975 01:38:24,280 --> 01:38:27,280 PUBLISHED THE IACC SUMMARY OF 2976 01:38:27,280 --> 01:38:28,800 ADVANCES FOR 2020, SO YOU ALL 2977 01:38:28,800 --> 01:38:30,240 CONTRIBUTED YOUR NOMINATIONS AND 2978 01:38:30,240 --> 01:38:31,800 VOTED ON THAT, AND THEN WE 2979 01:38:31,800 --> 01:38:33,000 PREPARED THE REPORT. 2980 01:38:33,000 --> 01:38:35,160 AND IT WAS ISSUED IN JUNE OF 2981 01:38:35,160 --> 01:38:36,760 2022. 2982 01:38:36,760 --> 01:38:38,960 AND THIS PROVIDES LAY-FRIENDLY 2983 01:38:38,960 --> 01:38:40,360 SUMMARIES OF 20 OF THE MOST 2984 01:38:40,360 --> 01:38:43,040 SIGNIFICANT ADVANCES IN ASD 2985 01:38:43,040 --> 01:38:44,160 BIOMEDICAL AND SERVICES RESEARCH 2986 01:38:44,160 --> 01:38:45,680 THAT YOU ALL SELECTED BY VOTE, 2987 01:38:45,680 --> 01:38:48,080 AND THE FINAL REPORT IS 2988 01:38:48,080 --> 01:38:49,120 AVAILABLE ONLINE AND FOR THE 2989 01:38:49,120 --> 01:38:50,480 FIRST TIME BASED ON FEEDBACK 2990 01:38:50,480 --> 01:38:52,960 FROM THE COMMITTEE, OUR TEAM 2991 01:38:52,960 --> 01:38:54,920 PREPARED AN EASY-READ VERSION OF 2992 01:38:54,920 --> 01:38:57,160 THE SUMMARY OF ADVANCES, AND WE 2993 01:38:57,160 --> 01:38:58,600 PLAN TO DO THAT GOING FORWARD 2994 01:38:58,600 --> 01:38:59,320 FOR OUR MAJOR DOCUMENTS. 2995 01:38:59,320 --> 01:39:01,080 SO YOU CAN ACCESS THIS ONLINE. 2996 01:39:01,080 --> 01:39:03,160 AND WE ENCOURAGE YOU TO LOOK AT 2997 01:39:03,160 --> 01:39:04,440 IT AND CONGRATULATIONS TO ALL 2998 01:39:04,440 --> 01:39:07,040 THE RESEARCHERS WHOSE RESEARCH 2999 01:39:07,040 --> 01:39:08,560 IS FEATURED IN THE REPORT, 3000 01:39:08,560 --> 01:39:14,360 INCLUDING SOME MEMBERS OF OUR 3001 01:39:14,360 --> 01:39:14,720 COMMITTEE. 3002 01:39:14,720 --> 01:39:15,840 SO AFTER THIS, WE'RE STILL 3003 01:39:15,840 --> 01:39:17,040 CATCHING UP A LITTLE BIT ON THE 3004 01:39:17,040 --> 01:39:18,680 SUMMARY OF ADVANCES. 3005 01:39:18,680 --> 01:39:20,040 THERE ARE A COUPLE OF YEARS THAT 3006 01:39:20,040 --> 01:39:21,400 WE ARE NOT QUITE CAUGHT UP ON SO 3007 01:39:21,400 --> 01:39:23,400 WE HAVE 2021 AND 2022. 3008 01:39:23,400 --> 01:39:25,320 SO LET ME UPDATE YOU ON WHERE WE 3009 01:39:25,320 --> 01:39:27,640 ARE WITH 2021. 3010 01:39:27,640 --> 01:39:30,160 SO THE STEPS OF THE PROCESS ON 3011 01:39:30,160 --> 01:39:31,040 THIS SLIDE, WE'VE GONE THROUGH 3012 01:39:31,040 --> 01:39:31,760 THE FIRST THREE. 3013 01:39:31,760 --> 01:39:34,040 SO WE'VE NOMINATED THE ARTICLES, 3014 01:39:34,040 --> 01:39:35,800 DISCUSSED THEM AT THE COMMITTEE 3015 01:39:35,800 --> 01:39:37,360 MEETING, AND ALSO WE DID AN 3016 01:39:37,360 --> 01:39:38,120 ONLINE DISCUSSION, WHICH WE'VE 3017 01:39:38,120 --> 01:39:39,240 SHARED THAT INFORMATION ON OUR 3018 01:39:39,240 --> 01:39:41,000 WEBSITE SO THAT IT'S TRANSPARENT 3019 01:39:41,000 --> 01:39:42,360 TO PEOPLE WHICH WE JUST DID SO 3020 01:39:42,360 --> 01:39:45,120 THAT WE COULD TRY TO CATCH UP. 3021 01:39:45,120 --> 01:39:46,560 AND THE IACC MEMBERS HAVE NOW 3022 01:39:46,560 --> 01:39:48,360 VOTED ON THE TOP 20 ARTICLES. 3023 01:39:48,360 --> 01:39:50,480 SO OUR OFFICE IS CURRENTLY IN 3024 01:39:50,480 --> 01:39:51,960 THE PROCESS OF PREPARING 3025 01:39:51,960 --> 01:39:55,800 SUMMARIES AND THE DRAFT 3026 01:39:55,800 --> 01:39:56,400 PUBLICATION. 3027 01:39:56,400 --> 01:39:57,480 SO WE ARE WORKING ON THAT, AND 3028 01:39:57,480 --> 01:39:58,920 WE WILL GIVE YOU A PREVIEW OF 3029 01:39:58,920 --> 01:40:01,200 THE DRAFT LATER THIS FALL, AND 3030 01:40:01,200 --> 01:40:02,800 BE PREPARING THE FINAL 3031 01:40:02,800 --> 01:40:05,040 PUBLICATION FOR EARLY 2023 AND 3032 01:40:05,040 --> 01:40:06,280 HOPEFULLY MAYBE AT THE JANUARY 3033 01:40:06,280 --> 01:40:07,880 MEETING, WE'RE ABLE TO SHARE THE 3034 01:40:07,880 --> 01:40:09,080 FINAL PUBLICATION OR SOON 3035 01:40:09,080 --> 01:40:14,760 THEREAFTER. 3036 01:40:14,760 --> 01:40:17,360 SO IN FRONT OF US RIGHT NOW IS 3037 01:40:17,360 --> 01:40:19,640 TO WORK THE 2022. 3038 01:40:19,640 --> 01:40:20,840 SO THE WORK ON 2021 FOR THE 3039 01:40:20,840 --> 01:40:22,480 COMMITTEE IS MOSTLY DONE AT THIS 3040 01:40:22,480 --> 01:40:22,680 POINT. 3041 01:40:22,680 --> 01:40:24,720 SO WE'RE MOVING ON TO 2022, 3042 01:40:24,720 --> 01:40:25,560 TRYING TO CATCH UP TO THE 3043 01:40:25,560 --> 01:40:26,800 PRESENT MOMENT. 3044 01:40:26,800 --> 01:40:29,240 SO I JUST SENT OUT A DATA CALL 3045 01:40:29,240 --> 01:40:32,840 TO EVERYONE ON THIS COMMITTEE 3046 01:40:32,840 --> 01:40:34,040 THIS WEEK AS YOUR FIRST DATA 3047 01:40:34,040 --> 01:40:36,080 CALL FOR 2022, AND WOULD ASK 3048 01:40:36,080 --> 01:40:37,080 THAT COMMITTEE MEMBERS CONSIDER 3049 01:40:37,080 --> 01:40:38,400 RESEARCH ARTICLES THAT HAVE BEEN 3050 01:40:38,400 --> 01:40:41,040 PUBLISHED IN 2022 THAT YOU THINK 3051 01:40:41,040 --> 01:40:42,440 ARE SIGNIFICANT AND YOU'D LIKE 3052 01:40:42,440 --> 01:40:43,880 TO NOMINATE FOR CONSIDERATION, 3053 01:40:43,880 --> 01:40:45,280 AND YOU CAN BASICALLY SEND THOSE 3054 01:40:45,280 --> 01:40:47,920 ON A ROLLING BASIS BETWEEN NOW 3055 01:40:47,920 --> 01:40:49,080 AND JANUARY 6TH, AND WE WILL 3056 01:40:49,080 --> 01:40:52,880 SEND YOU A COUPLE OF REMINDERS 3057 01:40:52,880 --> 01:40:53,880 TO PROMPT YOU TO THINK ABOUT 3058 01:40:53,880 --> 01:40:55,400 RESEARCH ARTICLES THAT YOU'VE 3059 01:40:55,400 --> 01:40:56,880 READ THAT YOU THINK ARE WORTHY 3060 01:40:56,880 --> 01:40:57,760 OF NOMINATION. 3061 01:40:57,760 --> 01:40:59,400 AND WE WILL PLAN TO DISCUSS THEM 3062 01:40:59,400 --> 01:41:02,000 AT OUR JANUARY MEETING, AND THEN 3063 01:41:02,000 --> 01:41:04,160 ALLOW YOU TO VOTE AND PUBLISH 3064 01:41:04,160 --> 01:41:07,120 THE FINAL REPORT IN THE SPRING. 3065 01:41:07,120 --> 01:41:08,480 AND AT THAT POINT, WE WILL BE 3066 01:41:08,480 --> 01:41:13,680 CAUGHT UP. 3067 01:41:13,680 --> 01:41:15,920 SO AS I SAID, OUR ACTION ITEMS 3068 01:41:15,920 --> 01:41:17,360 ARE -- I WILL BE SENDING YOU A 3069 01:41:17,360 --> 01:41:19,840 PREVIEW OF THE 2021 IACC SUMMARY 3070 01:41:19,840 --> 01:41:21,960 OF ADVANCES TO LOOK AT, AND IF 3071 01:41:21,960 --> 01:41:24,160 YOU DO HAVE ANY COMMENT OR 3072 01:41:24,160 --> 01:41:25,280 CORRECTION, WE CAN TAKE THOSE 3073 01:41:25,280 --> 01:41:26,560 INTO ACCOUNT BEFORE WE PUBLISH 3074 01:41:26,560 --> 01:41:29,480 THE FINAL REPORT AND THE EASY 3075 01:41:29,480 --> 01:41:30,360 READ VERSION. 3076 01:41:30,360 --> 01:41:33,440 AND THEN FOR THE TIME BEING 3077 01:41:33,440 --> 01:41:35,000 BETWEEN NOW AND EARLY JANUARY, 3078 01:41:35,000 --> 01:41:40,200 PLEASE SUBMIT YOUR NOMINATIONS 3079 01:41:40,200 --> 01:41:40,440 FOR 2022. 3080 01:41:40,440 --> 01:41:41,520 SO ARE THERE ANY QUESTIONS ABOUT 3081 01:41:41,520 --> 01:41:52,120 THE SUMMARY OF ADVANCES? 3082 01:41:52,120 --> 01:41:52,240 DENA? 3083 01:41:52,240 --> 01:41:54,640 >>JUST AN OBSERVATION. 3084 01:41:54,640 --> 01:41:56,120 I KNOW I MIGHT SOUND LIKE A 3085 01:41:56,120 --> 01:41:58,680 BROKEN RECORD, BUT I CAME ACROSS 3086 01:41:58,680 --> 01:42:00,800 A DISSERTATION BY A WOMAN NAMED 3087 01:42:00,800 --> 01:42:03,520 KATIE SAVIN, WHO EXAMINED WHAT 3088 01:42:03,520 --> 01:42:06,400 IT IS LIKE FOR DISABLED PEOPLE 3089 01:42:06,400 --> 01:42:08,840 TO LIVE ON SOCIAL SECURITY. 3090 01:42:08,840 --> 01:42:11,920 AND HER FINDINGS FOUND THINGS 3091 01:42:11,920 --> 01:42:14,440 THAT WE AT THE GRASSROOTS LEVEL 3092 01:42:14,440 --> 01:42:16,880 WELL KNOW ABOUT USING SEX WORK, 3093 01:42:16,880 --> 01:42:19,080 USING BARTERING, WORKING UNDER 3094 01:42:19,080 --> 01:42:23,240 THE TABLE, LIVING FAR BELOW THE 3095 01:42:23,240 --> 01:42:24,640 POVERTY LINE AS SOME OF THE 3096 01:42:24,640 --> 01:42:25,800 OUTCOMES THAT PEOPLE ARE LIVING 3097 01:42:25,800 --> 01:42:29,200 WITH IN REGARD TO THEIR LOW 3098 01:42:29,200 --> 01:42:33,720 INCOME ON SOCIAL SECURITY. 3099 01:42:33,720 --> 01:42:36,800 AND I -- I KNOW WE ARE VERY MUCH 3100 01:42:36,800 --> 01:42:38,360 SUPPORTIVE OF MORE QUANTITATIVE 3101 01:42:38,360 --> 01:42:41,280 RESEARCH, BUT I JUST HAVE TO 3102 01:42:41,280 --> 01:42:45,040 SAY, THOSE FINDINGS ARE 3103 01:42:45,040 --> 01:42:45,720 INSTRUMENTALLY VALUABLE AND I 3104 01:42:45,720 --> 01:42:47,040 WOULD JUST LIKE TO ADVOCATE FOR 3105 01:42:47,040 --> 01:42:50,560 US TO AT LEAST OPEN ONE TO THREE 3106 01:42:50,560 --> 01:42:52,480 SLOTS SPECIFICALLY FOR THIS KIND 3107 01:42:52,480 --> 01:42:54,080 OF GROUNDBREAKING QUALITATIVE 3108 01:42:54,080 --> 01:42:54,440 RESEARCH. 3109 01:42:54,440 --> 01:42:57,760 I KNOW THE SAMPLES ARE SMALL, 3110 01:42:57,760 --> 01:42:59,440 BUT I THINK THAT THEY SHOULD BE 3111 01:42:59,440 --> 01:43:00,720 INFORMING FURTHER QUANTITATIVE 3112 01:43:00,720 --> 01:43:01,920 BIG DATA RESEARCH. 3113 01:43:01,920 --> 01:43:03,440 SO THAT'S MY PITCH FOR THE DAY. 3114 01:43:03,440 --> 01:43:04,200 THANKS FOR LISTENING. 3115 01:43:04,200 --> 01:43:05,000 >>THANK YOU. 3116 01:43:05,000 --> 01:43:06,520 SO QUALITATIVE RESEARCH IS 3117 01:43:06,520 --> 01:43:07,080 WELCOME. 3118 01:43:07,080 --> 01:43:09,400 WE DO TRY TO LIMIT TO PUBLISHED 3119 01:43:09,400 --> 01:43:12,040 RESEARCH IN JOURNALS, BUT IF 3120 01:43:12,040 --> 01:43:13,640 THIS RESEARCH IS GOING TO BE 3121 01:43:13,640 --> 01:43:15,160 PUBLISHED IN A JOURNAL UPCOMING, 3122 01:43:15,160 --> 01:43:17,400 WHICH OFTENTIMES PEOPLE WITH 3123 01:43:17,400 --> 01:43:18,480 DISSERTATIONS DO PUBLISH IN A 3124 01:43:18,480 --> 01:43:20,760 JOURNAL AS A PART OF THEIR WORK, 3125 01:43:20,760 --> 01:43:21,960 WE CAN CONSIDER IT FOR THIS. 3126 01:43:21,960 --> 01:43:24,240 WE ALSO, IF YOU FEEL THAT -- IF 3127 01:43:24,240 --> 01:43:25,400 THAT DISSERTATION IS PUBLISHED 3128 01:43:25,400 --> 01:43:27,800 AT THIS POINT, YOU CAN SEND IT 3129 01:43:27,800 --> 01:43:29,680 FORWARD TO US FOR CONSIDERATION 3130 01:43:29,680 --> 01:43:31,080 FOR MENTION IN THE STRATEGIC 3131 01:43:31,080 --> 01:43:32,040 PLAN BECAUSE THAT'S A LITTLE BIT 3132 01:43:32,040 --> 01:43:33,400 OF A DIFFERENT KIND OF DOCUMENT, 3133 01:43:33,400 --> 01:43:34,560 AND WE CAN INCLUDE DIFFERENT 3134 01:43:34,560 --> 01:43:36,640 KINDS OF CITATIONS THERE. 3135 01:43:36,640 --> 01:43:38,560 >>I JUST THROW IT OUT FOR ITS 3136 01:43:38,560 --> 01:43:39,640 VALUE AND AS AN EXAMPLE. 3137 01:43:39,640 --> 01:43:42,000 I'M NOT SUGGESTING WE SHOULD 3138 01:43:42,000 --> 01:43:44,520 HAVE DISSERTATIONS REPRESENTED 3139 01:43:44,520 --> 01:43:45,800 HERE, BUT I'M JUST THROWING IT 3140 01:43:45,800 --> 01:43:48,000 OUT AS HOW CRITICALLY VALUABLE 3141 01:43:48,000 --> 01:43:49,440 THE INFORMATION SHE GLEANED WAS 3142 01:43:49,440 --> 01:43:52,240 IN TERMS OF INFORMING BIG 3143 01:43:52,240 --> 01:43:52,520 DATASETS. 3144 01:43:52,520 --> 01:43:52,840 SO THANK YOU. 3145 01:43:52,840 --> 01:43:53,640 >>THANK YOU. 3146 01:43:53,640 --> 01:43:54,320 YES. 3147 01:43:54,320 --> 01:43:57,240 SO QUALITATIVE RESEARCH IS 3148 01:43:57,240 --> 01:43:59,200 CERTAINLY ACCEPTABLE AND 3149 01:43:59,200 --> 01:44:00,520 WELCOME, SO PLEASE DON'T 3150 01:44:00,520 --> 01:44:01,920 HESITATE TO SEND STUDIES THAT 3151 01:44:01,920 --> 01:44:05,920 ARE QUALITATIVE IN NATURE. 3152 01:44:05,920 --> 01:44:06,520 ALL RIGHT. 3153 01:44:06,520 --> 01:44:10,320 SO THEN I WILL MOVE ON TO THE 3154 01:44:10,320 --> 01:44:11,240 STRATEGIC PLAN DISCUSSION TO 3155 01:44:11,240 --> 01:44:18,680 GIVE US SOME TIME TO TALK ABOUT 3156 01:44:18,680 --> 01:44:20,320 THIS AND BRING YOU UP TO DATE ON 3157 01:44:20,320 --> 01:44:21,840 WHERE WE ARE ON THE STRATEGIC 3158 01:44:21,840 --> 01:44:22,400 PLAN PROCESS. 3159 01:44:22,400 --> 01:44:24,600 I'M GOING TO RECAP THE STEPS, I 3160 01:44:24,600 --> 01:44:26,000 KNOW IT'S LENGTHY AND WE'VE BEEN 3161 01:44:26,000 --> 01:44:28,600 WORKING ON IT FOR OVER A YEAR 3162 01:44:28,600 --> 01:44:30,400 AND JUST AGAIN WANT EVERYBODY TO 3163 01:44:30,400 --> 01:44:31,200 BE ON THE SAME PAGE ABOUT WHERE 3164 01:44:31,200 --> 01:44:31,640 WE ARE. 3165 01:44:31,640 --> 01:44:32,600 SO LAST OCTOBER THROUGH 3166 01:44:32,600 --> 01:44:34,000 NOVEMBER, OUR OFFICE COLLECTED 3167 01:44:34,000 --> 01:44:35,080 INPUT ON THE STRATEGIC PLAN FROM 3168 01:44:35,080 --> 01:44:37,360 THE GENERAL PUBLIC IN A REQUEST 3169 01:44:37,360 --> 01:44:39,320 FOR INFORMATION. 3170 01:44:39,320 --> 01:44:41,720 AND RESULTS OF THAT RFI WERE 3171 01:44:41,720 --> 01:44:43,120 PRESENTED AT THE JANUARY 2022 3172 01:44:43,120 --> 01:44:45,120 IACC MEETING. 3173 01:44:45,120 --> 01:44:46,520 IN NOVEMBER THROUGH MARCH -- 3174 01:44:46,520 --> 01:44:49,960 WELL, NOVEMBER 2021 TO 3175 01:44:49,960 --> 01:44:51,080 MARCH 2022, WE ALSO COLLECTED 3176 01:44:51,080 --> 01:44:52,800 INPUT ON THE STRATEGIC PLAN FROM 3177 01:44:52,800 --> 01:44:54,520 IACC MEMBERS THROUGH A SURVEY. 3178 01:44:54,520 --> 01:44:55,600 AND THE RESULTS OF THAT SURVEY 3179 01:44:55,600 --> 01:44:57,600 WERE SHARED AT THE APRIL MEETING 3180 01:44:57,600 --> 01:45:01,480 AND ARE POSTED ONLINE. 3181 01:45:01,480 --> 01:45:03,360 WE ALSO NEXT IN APRIL TO JUNE 3182 01:45:03,360 --> 01:45:05,520 PREPARED THE FIRST DRAFT OF THE 3183 01:45:05,520 --> 01:45:06,280 STRATEGIC PLAN WHICH WAS SLAIRED 3184 01:45:06,280 --> 01:45:09,760 WITSHAREDWITH THE COMMITTEE OVEE 3185 01:45:09,760 --> 01:45:10,000 SUMMER. 3186 01:45:10,000 --> 01:45:12,680 WE HELD A MEETING IN JULY WHERE 3187 01:45:12,680 --> 01:45:13,880 MANY, MANY MEMBERS OF THE 3188 01:45:13,880 --> 01:45:14,880 COMMITTEE WERE ABLE TO MAKE TO 3189 01:45:14,880 --> 01:45:16,560 THAT WORKING GROUP MEETING AND 3190 01:45:16,560 --> 01:45:18,320 DISCUSS YOUR INPUT ON THE FIRST 3191 01:45:18,320 --> 01:45:20,520 DRAFT OF THE IACC STRATEGIC PLAN 3192 01:45:20,520 --> 01:45:22,240 AND THAT WAS A VERY HELPFUL AND 3193 01:45:22,240 --> 01:45:23,400 PRODUCTIVE MEETING WHERE WE GOT 3194 01:45:23,400 --> 01:45:25,360 A LOT OF INPUT AND WE REALLY 3195 01:45:25,360 --> 01:45:27,000 APPRECIATE EVERYONE'S ACTIVE 3196 01:45:27,000 --> 01:45:30,040 PARTS PAIGHTS IPARTICIPATION IN. 3197 01:45:30,040 --> 01:45:31,240 AFTER THAT MEETING, THE NEXT 3198 01:45:31,240 --> 01:45:34,400 STEP WE TOOK IS JULY THROUGH 3199 01:45:34,400 --> 01:45:35,600 SEPTEMBER, IACC MEMBERS 3200 01:45:35,600 --> 01:45:38,200 RESPONDED TO ANOTHER SURVEY THAT 3201 01:45:38,200 --> 01:45:39,400 COLLECTED INPUT ON OTHER ASPECTS 3202 01:45:39,400 --> 01:45:41,000 OF THE STRATEGIC PLAN THAT 3203 01:45:41,000 --> 01:45:43,280 HADN'T ALREADY BEEN DISCUSSED, 3204 01:45:43,280 --> 01:45:46,040 AS WELL AS LEFT ROOM FOR OTHER 3205 01:45:46,040 --> 01:45:49,240 COMMENTS TO BE SHARED, AND THOSE 3206 01:45:49,240 --> 01:45:51,680 SURVEY RESULTS ARE POSTED ONLINE 3207 01:45:51,680 --> 01:45:53,320 FOR THIS MEETING, HOWEVER, WE'VE 3208 01:45:53,320 --> 01:45:56,280 ALREADY INCORPORATED THOSE TO 3209 01:45:56,280 --> 01:45:58,000 OUR BEST ABILITY IN THE CURRENT 3210 01:45:58,000 --> 01:46:01,600 DRAFT. 3211 01:46:01,600 --> 01:46:03,800 SO WE HAVE ON OUR TEAM PREPARED 3212 01:46:03,800 --> 01:46:07,200 A REVISED DRAFT OF THE STRATEGIC 3213 01:46:07,200 --> 01:46:08,440 PLAN AND WITH THIS, WE DID HAVE 3214 01:46:08,440 --> 01:46:12,080 OUR TEAM DO THE HEAVY LIFTING OF 3215 01:46:12,080 --> 01:46:13,480 WRITING, TAKING INTO ACCOUNT ALL 3216 01:46:13,480 --> 01:46:15,080 OF YOUR COMMENTS, COMMENTS WE'VE 3217 01:46:15,080 --> 01:46:17,080 GOTTEN FROM THE PUBLIC, THE RFI, 3218 01:46:17,080 --> 01:46:19,000 TO TRY TO PREPARE A DRAFT THAT 3219 01:46:19,000 --> 01:46:21,160 REFLECTS A COLLECTIVE VIEW FROM 3220 01:46:21,160 --> 01:46:22,120 ALL OF THE INFORMATION THAT 3221 01:46:22,120 --> 01:46:25,880 WE'VE BEEN ABLE TO GATHER. 3222 01:46:25,880 --> 01:46:27,320 THIS HAS BEEN POSTED ON OUR 3223 01:46:27,320 --> 01:46:28,480 WEBSITE PRIOR TO THIS MEETING, 3224 01:46:28,480 --> 01:46:29,760 SO ANYONE WHO'S INTERESTED, YOU 3225 01:46:29,760 --> 01:46:34,160 CAN GO TO THE MEETING PAGE AND 3226 01:46:34,160 --> 01:46:36,640 YOU'LL SEE A LISTING PAGE OF ALL 3227 01:46:36,640 --> 01:46:38,080 OF THE CHAPTERS OF THE STRATEGIC 3228 01:46:38,080 --> 01:46:40,480 PLAN WE HAVE AVAILABLE NOW FOR 3229 01:46:40,480 --> 01:46:42,240 REVIEW. 3230 01:46:42,240 --> 01:46:46,040 SO IACC MEMBERS, I KNOW YOU HAVE 3231 01:46:46,040 --> 01:46:46,880 RECEIVED THIS. 3232 01:46:46,880 --> 01:46:49,280 IT'S A VERY LENGTHY DOCUMENT, I 3233 01:46:49,280 --> 01:46:53,120 DON'T EXPECT PEOPLE HAVE READ IT 3234 01:46:53,120 --> 01:46:54,520 VERBATIM, BUT YOU WILL HAVE 3235 01:46:54,520 --> 01:46:55,840 ADDITIONAL TIME TO LOOK AT IT 3236 01:46:55,840 --> 01:46:57,040 AND PROVIDE US WITH INPUT. 3237 01:46:57,040 --> 01:46:59,600 WE WILL PROVIDE YOU WITH ANOTHER 3238 01:46:59,600 --> 01:47:01,560 FORUM, SO WE WILL CREATE ANOTHER 3239 01:47:01,560 --> 01:47:03,000 SURVEY DOCUMENT AND THE REASON 3240 01:47:03,000 --> 01:47:05,040 THAT WE DO THIS TO COLLECT DATA 3241 01:47:05,040 --> 01:47:06,400 IS THAT WE DON'T WANT TO LOSE 3242 01:47:06,400 --> 01:47:10,840 EMAILS LIKE IF YOU JUST EMAILED 3243 01:47:10,840 --> 01:47:12,560 TO ME, IF I'M GETTING EMAIL FROM 3244 01:47:12,560 --> 01:47:13,880 40 PEOPLE, I DON'T WANT ANYTHING 3245 01:47:13,880 --> 01:47:15,520 GETTING LOST AND IT ALSO ALLOWS 3246 01:47:15,520 --> 01:47:18,120 US TO BIN SOME OF THE COMMENTS 3247 01:47:18,120 --> 01:47:19,360 TO WHICH PART OF THE STRATEGIC 3248 01:47:19,360 --> 01:47:20,640 PLAN THEY BELONG TO AND IT'S 3249 01:47:20,640 --> 01:47:21,720 EASIER FOR OUR WHOLE TEAM TO BE 3250 01:47:21,720 --> 01:47:23,080 ABLE TO COLLECT IT BECAUSE IT 3251 01:47:23,080 --> 01:47:29,120 ENDS UP IN A SPREADSHEET THAT 3252 01:47:29,120 --> 01:47:30,320 MAKES IT EASY FOR US TO MAKE 3253 01:47:30,320 --> 01:47:31,320 SURE THE COMMENTS ARE GOING TO 3254 01:47:31,320 --> 01:47:32,960 THE RIGHT PLACE IN THE STRATEGIC 3255 01:47:32,960 --> 01:47:33,360 PLAN. 3256 01:47:33,360 --> 01:47:34,920 SO BEAR WITH ANOTHER SURVEY, 3257 01:47:34,920 --> 01:47:37,080 HOWEVER, THIS ONE WILL BE FAIRLY 3258 01:47:37,080 --> 01:47:37,560 SIMPLE. 3259 01:47:37,560 --> 01:47:39,040 IT WILL JUST ALLOW YOU TO 3260 01:47:39,040 --> 01:47:41,560 PROVIDE INPUT ON THE DIFFERENT 3261 01:47:41,560 --> 01:47:48,840 CHAPTERS OF THE STRATEGIC PLAN. 3262 01:47:48,840 --> 01:47:50,240 SO WITH THAT, OUR TEAM IN 3263 01:47:50,240 --> 01:47:51,240 DECEMBER WILL PLAN TO PROVIDE 3264 01:47:51,240 --> 01:47:53,520 YOU WITH THE REVISED VERSION OF 3265 01:47:53,520 --> 01:47:54,280 THE STRATEGIC PLAN AFTER WE 3266 01:47:54,280 --> 01:47:58,240 COLLECT YOUR INPUT ON THIS 3267 01:47:58,240 --> 01:47:59,320 VERSION, AND WE WILL PROVIDE YOU 3268 01:47:59,320 --> 01:48:01,720 WITH A NEW VERSION BEFORE THE 3269 01:48:01,720 --> 01:48:02,680 JANUARY 2023 MEETING WHICH IS 3270 01:48:02,680 --> 01:48:04,280 HAPPENING ON JANUARY 18TH, AND 3271 01:48:04,280 --> 01:48:05,320 WE HOPE THAT WILL BE THE FINAL 3272 01:48:05,320 --> 01:48:06,720 PLAN THAT WE WILL BE ABLE TO 3273 01:48:06,720 --> 01:48:13,040 APPROVE. 3274 01:48:13,040 --> 01:48:14,360 SO ANY QUESTIONS ABOUT THE 3275 01:48:14,360 --> 01:48:14,800 PROCESS? 3276 01:48:14,800 --> 01:48:17,400 SO WE'VE MADE A LOT OF PROGRESS 3277 01:48:17,400 --> 01:48:21,080 AND I KNOW THAT IT HAS BEEN 3278 01:48:21,080 --> 01:48:21,560 LENGTHY. 3279 01:48:21,560 --> 01:48:23,040 HOWEVER, WE DO HAVE A LOT OF 3280 01:48:23,040 --> 01:48:24,320 INPUT THAT WE'RE TRYING TO PUT 3281 01:48:24,320 --> 01:48:25,000 TOGETHER TO MAKE SURE THIS PLAN 3282 01:48:25,000 --> 01:48:28,640 IS COMPREHENSIVE AND UP TO DATE 3283 01:48:28,640 --> 01:48:34,320 TO WHERE WE ARE TODAY. 3284 01:48:34,320 --> 01:48:36,040 SO TO GIVE YOU AN UPDATE ON THE 3285 01:48:36,040 --> 01:48:37,320 CONTENTS OF THE IACC STRATEGIC 3286 01:48:37,320 --> 01:48:38,560 PLAN, THERE ARE SOME DIFFERENT 3287 01:48:38,560 --> 01:48:40,360 THEMES AND ISSUES THAT WE'VE 3288 01:48:40,360 --> 01:48:41,560 EMPHASIZED IN THE STRATEGIC 3289 01:48:41,560 --> 01:48:44,320 PLAN, INCLUDING MAJOR RESEARCH 3290 01:48:44,320 --> 01:48:47,440 SERVICES AND POLICY ISSUES. 3291 01:48:47,440 --> 01:48:48,800 WE'VE ALSO INCLUDED THE NEED -- 3292 01:48:48,800 --> 01:48:50,080 THE INCREASED NEED FOR INCLUSION 3293 01:48:50,080 --> 01:48:53,760 IN RESEARCH, INCLUDING 3294 01:48:53,760 --> 01:48:54,640 COMMUNITY-BASED PARTICIPATORY 3295 01:48:54,640 --> 01:48:55,720 RESEARCH, WHICH WE'VE HEARD FROM 3296 01:48:55,720 --> 01:48:56,840 MEMBERS OF THE COMMITTEE AND THE 3297 01:48:56,840 --> 01:48:59,560 COMMUNITY ABOUT. 3298 01:48:59,560 --> 01:49:01,360 WE ALSO HAVE TAKEN A DELIBERATE 3299 01:49:01,360 --> 01:49:02,680 APPROACH TO ADDRESS THE WHOLE 3300 01:49:02,680 --> 01:49:04,080 SPECTRUM AND THE WHOLE LIFESPAN, 3301 01:49:04,080 --> 01:49:05,400 AND INCLUDING THOSE WITH HIGH 3302 01:49:05,400 --> 01:49:08,680 SUPPORT NEEDS. 3303 01:49:08,680 --> 01:49:09,520 WE'VE BEEN VERY COMMITTED TO 3304 01:49:09,520 --> 01:49:11,400 EQUITY AND REDUCING STIGMA, 3305 01:49:11,400 --> 01:49:14,040 DISPARITIES AND DISCRIMINATION, 3306 01:49:14,040 --> 01:49:14,960 WHICH WE'VE HEARD ABOUT FROM 3307 01:49:14,960 --> 01:49:17,600 THIS COMMITTEE AS BEING A VERY 3308 01:49:17,600 --> 01:49:18,480 HIGH PRIORITY, AND I JUST 3309 01:49:18,480 --> 01:49:20,880 MENTIONED TO YOU THE DEIA 3310 01:49:20,880 --> 01:49:22,600 EFFORTS ACROSS THE FEDERAL 3311 01:49:22,600 --> 01:49:24,480 GOVERNMENT, AND THESE ARE IN 3312 01:49:24,480 --> 01:49:25,760 STEP WITH THAT SET OF 3313 01:49:25,760 --> 01:49:26,760 PRIORITIES, AND WE'RE MAKING 3314 01:49:26,760 --> 01:49:29,160 EVERY EFFORT TO TRY TO RAISE 3315 01:49:29,160 --> 01:49:30,280 UNDERSTANDING AND AWARENESS THAT 3316 01:49:30,280 --> 01:49:32,280 THE COMMITTEE DOES STAND 3317 01:49:32,280 --> 01:49:33,680 TOGETHER IN A COMMITMENT TO 3318 01:49:33,680 --> 01:49:36,480 EQUITY. 3319 01:49:36,480 --> 01:49:39,120 ALSO, UPDATING YOU ON THE 3320 01:49:39,120 --> 01:49:40,240 RESEARCH PORTFOLIO AND BUDGET 3321 01:49:40,240 --> 01:49:42,960 RECOMMENDATIONS SO YOU WILL SEE 3322 01:49:42,960 --> 01:49:44,160 IN THE DRAFT WE HAVE NOW, WE DO 3323 01:49:44,160 --> 01:49:45,280 HAVE SOME INFORMATION ABOUT THE 3324 01:49:45,280 --> 01:49:46,240 RESEARCH PORTFOLIO ANALYSIS THAT 3325 01:49:46,240 --> 01:49:47,360 WE'RE GOING TO BE SHARING WITH 3326 01:49:47,360 --> 01:49:49,320 YOU IN JANUARY. 3327 01:49:49,320 --> 01:49:50,440 AND THE NEW BUDGET 3328 01:49:50,440 --> 01:49:51,040 RECOMMENDATION THAT I'LL SHARE 3329 01:49:51,040 --> 01:49:53,000 WITH YOU TODAY THAT YOU ALL 3330 01:49:53,000 --> 01:49:54,760 CONTRIBUTED TO. 3331 01:49:54,760 --> 01:49:59,760 AND MAJOR FEDERAL ACTIVITIES AND 3332 01:49:59,760 --> 01:50:00,520 INITIATIVES AND INTERAGENCY 3333 01:50:00,520 --> 01:50:01,920 COORDINATION TO GIVE A PICTURE 3334 01:50:01,920 --> 01:50:02,800 OF WHAT'S GOING ON. 3335 01:50:02,800 --> 01:50:07,360 SO YOU HAVE ONLINE, YOU'VE 3336 01:50:07,360 --> 01:50:08,280 RECEIVED THE CORE CHAPTERS OF 3337 01:50:08,280 --> 01:50:09,560 THE PLAN THAT HAVE BEEN UPDATED 3338 01:50:09,560 --> 01:50:11,080 OR CREATED INCORPORATING YOUR 3339 01:50:11,080 --> 01:50:14,000 FEEDBACK, INCLUDING CHAPTER 1 OR 3340 01:50:14,000 --> 01:50:15,000 QUESTION 1, WHICH IS ON 3341 01:50:15,000 --> 01:50:17,720 SCREENING AND DIAGNOSIS. 3342 01:50:17,720 --> 01:50:19,160 CHAPTER 2, WHICH IS ON BIOLOGY. 3343 01:50:19,160 --> 01:50:20,480 AND WE DID SURVEY YOU ON THE 3344 01:50:20,480 --> 01:50:22,240 TITLES FOR THIS CHAPTER AND 3345 01:50:22,240 --> 01:50:23,640 THERE REALLY WAS JUST NO 3346 01:50:23,640 --> 01:50:24,960 AGREEMENT ON ANYTHING NEW, SO WE 3347 01:50:24,960 --> 01:50:29,640 WILL BE STICKING WITH BIOLOGY. 3348 01:50:29,640 --> 01:50:30,600 CHAPTER 3, GENETIC AND 3349 01:50:30,600 --> 01:50:33,120 ENVIRONMENTAL FACTORS. 3350 01:50:33,120 --> 01:50:35,280 CHAPTER 4 IS INTERVENTIONS. 3351 01:50:35,280 --> 01:50:38,040 CHAPTER 5 IS SERVICES AND 3352 01:50:38,040 --> 01:50:39,000 SUPPORTS. 3353 01:50:39,000 --> 01:50:41,480 CHAPTER 6 IS THE LIFESPAN. 3354 01:50:41,480 --> 01:50:45,120 CHAPTER 7, INFRASTRUCTURE AND 3355 01:50:45,120 --> 01:50:45,760 SURVEILLANCE. 3356 01:50:45,760 --> 01:50:47,520 AND WE HAVE THE CROSS-CUTTING 3357 01:50:47,520 --> 01:50:50,240 TOPICS OF SEX AND GENDER, AND 3358 01:50:50,240 --> 01:50:51,680 PROMOTING EQUITY AND REDUCING 3359 01:50:51,680 --> 01:50:52,200 DISPARITIES. 3360 01:50:52,200 --> 01:50:53,840 AND FINALLY, THERE'S A SECTION 3361 01:50:53,840 --> 01:50:56,280 ON IMPACTING -- THE IMPACT OF 3362 01:50:56,280 --> 01:51:02,600 COVID-19. 3363 01:51:02,600 --> 01:51:04,080 WE ALSO HAVE SOME OTHER SECTIONS 3364 01:51:04,080 --> 01:51:05,200 THAT HAVE BEEN DEVELOPED 3365 01:51:05,200 --> 01:51:06,400 INCLUDING THE MISSION AND VISION 3366 01:51:06,400 --> 01:51:07,840 STATEMENT WHICH HAVE BEEN 3367 01:51:07,840 --> 01:51:09,080 REVISED AS WELL AS A REVISED SET 3368 01:51:09,080 --> 01:51:10,200 OF CORE VALUES THAT I'LL SHARE 3369 01:51:10,200 --> 01:51:11,400 WITH YOU TODAY. 3370 01:51:11,400 --> 01:51:12,280 THE BUDGET RECOMMENDATION, WHICH 3371 01:51:12,280 --> 01:51:14,680 IS REQUIRED UNDER THE AUTISM 3372 01:51:14,680 --> 01:51:16,080 CARES ACT, WHICH YOU ALL 3373 01:51:16,080 --> 01:51:18,920 CONTRIBUTED TO A NEW REVISION OF 3374 01:51:18,920 --> 01:51:19,280 THAT. 3375 01:51:19,280 --> 01:51:20,560 AND THE STATEMENT ON DUPLICATION 3376 01:51:20,560 --> 01:51:21,720 OF EFFORT, WHICH IS ALSO 3377 01:51:21,720 --> 01:51:28,200 REQUIRED BY LAW, AND A 3378 01:51:28,200 --> 01:51:29,280 CONCLUSION. 3379 01:51:29,280 --> 01:51:30,480 SO BEFORE I MOVE ON TO ANYTHING 3380 01:51:30,480 --> 01:51:32,800 ELSE, ANY QUESTIONS ABOUT THOSE 3381 01:51:32,800 --> 01:51:36,800 SECTIONS? 3382 01:51:36,800 --> 01:51:47,040 OH, JALYNN? 3383 01:51:53,320 --> 01:51:54,840 IF YOU HAVE SOMETHING WRITTEN, 3384 01:51:54,840 --> 01:51:57,040 JALYNN, YOU CAN SEND TO SEND 3385 01:51:57,040 --> 01:51:58,560 COMMENTS HERE. 3386 01:51:58,560 --> 01:51:58,960 >>SORRY. 3387 01:51:58,960 --> 01:51:59,920 >>NO PROBLEM. 3388 01:51:59,920 --> 01:52:02,560 >>I HAD SOMETHING COME ON THE 3389 01:52:02,560 --> 01:52:05,760 RADAR, AND I'M WONDERING IF WE 3390 01:52:05,760 --> 01:52:08,600 NEED TO ADDRESS THIS, AND IT IS 3391 01:52:08,600 --> 01:52:10,200 FAIRLY MAJOR SO RATHER THAN 3392 01:52:10,200 --> 01:52:10,600 COMMENT LATER ON. 3393 01:52:10,600 --> 01:52:11,120 >>OKAY. 3394 01:52:11,120 --> 01:52:13,280 >>IT IS ABOUT MENTAL HEALTH AND 3395 01:52:13,280 --> 01:52:13,720 DISABILITIES. 3396 01:52:13,720 --> 01:52:15,440 AND I'M WONDERING IF WE NEED TO 3397 01:52:15,440 --> 01:52:18,400 LOOK AT SOMETHING IN OUR 3398 01:52:18,400 --> 01:52:20,280 STRATEGIC PLAN, BECAUSE I WAS 3399 01:52:20,280 --> 01:52:23,720 INVOLVED IN A CONFERENCE THAT IS 3400 01:52:23,720 --> 01:52:27,560 FINANCED BY SOME BIG DOLLARS 3401 01:52:27,560 --> 01:52:28,680 WITH MENTAL HEALTH, AND THERE 3402 01:52:28,680 --> 01:52:30,840 WERE MANY OTHER SUBGROUPS THAT 3403 01:52:30,840 --> 01:52:33,280 WERE BEING MENTIONED BUT 3404 01:52:33,280 --> 01:52:35,200 DISABILITIES, AND ESPECIALLY 3405 01:52:35,200 --> 01:52:37,360 AUTISM, WEREN'T EVEN ON THE 3406 01:52:37,360 --> 01:52:37,560 RADAR. 3407 01:52:37,560 --> 01:52:39,560 AND I'VE BEEN INVITED THERE, AND 3408 01:52:39,560 --> 01:52:42,600 SO I ENDED UP BY DEFAULT BEING A 3409 01:52:42,600 --> 01:52:44,720 VOICE FOR DISABILITIES IN 3410 01:52:44,720 --> 01:52:45,880 GENERAL, AND AUTISM 3411 01:52:45,880 --> 01:52:48,960 SPECIFICALLY. 3412 01:52:48,960 --> 01:52:50,240 THESE HAPPEN TO BE NATIONAL 3413 01:52:50,240 --> 01:52:54,400 ORGANIZATIONS, PEOPLE THAT ARE 3414 01:52:54,400 --> 01:52:56,080 WORKING ON DEFINING THINGS FOR 3415 01:52:56,080 --> 01:52:58,880 THE NATION, AND I'M WONDERING IF 3416 01:52:58,880 --> 01:53:00,560 WE NEED TO LOOK AT SOMETHING IN 3417 01:53:00,560 --> 01:53:02,600 THE STRAL TEE JIK PLAN THAT IS 3418 01:53:02,600 --> 01:53:05,080 ADDRESSING THE MENTAL HEALTH 3419 01:53:05,080 --> 01:53:10,000 ISSUES THAT GO ALONG WITH OUR 3420 01:53:10,000 --> 01:53:11,360 POPULATION AND WHAT IS OR ISN'T 3421 01:53:11,360 --> 01:53:12,520 BEING ADDRESSED AND WHAT MIGHT 3422 01:53:12,520 --> 01:53:13,440 NEED TO BE. 3423 01:53:13,440 --> 01:53:16,520 IT MAY NOT NEED TO BE A LARGE 3424 01:53:16,520 --> 01:53:19,160 COMPONENT, BUT I THINK WE NEED 3425 01:53:19,160 --> 01:53:20,440 TO MENTION THINGS BECAUSE IF 3426 01:53:20,440 --> 01:53:23,200 WE'RE EXPECTING OTHERS IN THE 3427 01:53:23,200 --> 01:53:24,680 MENTAL HEALTH ARENA TO BE 3428 01:53:24,680 --> 01:53:27,000 ADDRESSING SOME OF THESE THINGS 3429 01:53:27,000 --> 01:53:31,040 TO INCLUDE OUR POPULATION, THAT 3430 01:53:31,040 --> 01:53:32,560 WE SHOULD INCLUDE IT WITHIN OUR 3431 01:53:32,560 --> 01:53:33,520 STRATEGIC PLAN. 3432 01:53:33,520 --> 01:53:34,520 AND IT ISN'T SOMETHING THAT I 3433 01:53:34,520 --> 01:53:36,360 SEE LISTED, PER SE, IN WHAT 3434 01:53:36,360 --> 01:53:36,840 WE'VE BEEN DOING. 3435 01:53:36,840 --> 01:53:38,560 >>WELL, THANK YOU SO MUCH FOR 3436 01:53:38,560 --> 01:53:41,400 BRINGING THAT UP, AND EVEN 3437 01:53:41,400 --> 01:53:43,000 OFFLINE, DR. GORDON AND I HAVE 3438 01:53:43,000 --> 01:53:43,760 TALKED ABOUT THAT. 3439 01:53:43,760 --> 01:53:44,880 MENTAL HEALTH CERTAINLY IS A 3440 01:53:44,880 --> 01:53:46,760 THEME THAT HAS COME UP IN 3441 01:53:46,760 --> 01:53:48,360 SEVERAL DIFFERENT PARTS OF THE 3442 01:53:48,360 --> 01:53:50,320 STRATEGIC PLAN, INCLUDING 3443 01:53:50,320 --> 01:53:54,320 CHAPTERS 2 AND 4, AND CHAPTERS . 3444 01:53:54,320 --> 01:53:55,240 SO MENTAL HEALTH HAS COME UP IN 3445 01:53:55,240 --> 01:53:56,760 ALL THOSE AREAS AND I THINK THIS 3446 01:53:56,760 --> 01:53:57,840 AFTERNOON IN OUR AGING 3447 01:53:57,840 --> 01:53:58,840 DISCUSSION, YOU'RE GOING TO BE 3448 01:53:58,840 --> 01:54:00,120 HEARING ABOUT MENTAL HEALTH AS 3449 01:54:00,120 --> 01:54:00,320 WELL. 3450 01:54:00,320 --> 01:54:02,960 SO THIS IS INDEED A VERY HIGH 3451 01:54:02,960 --> 01:54:04,160 PRIORITY AND JOSH MAY WANT TO 3452 01:54:04,160 --> 01:54:05,560 SAY SOMETHING ABOUT THIS AS 3453 01:54:05,560 --> 01:54:07,120 DIRECTOR OF THE NATIONAL 3454 01:54:07,120 --> 01:54:09,400 INSTITUTE OF MENTAL HEALTH. 3455 01:54:09,400 --> 01:54:10,720 >>SO JALYNN, I APPRECIATE YOU 3456 01:54:10,720 --> 01:54:11,560 BRINGING IT UP. 3457 01:54:11,560 --> 01:54:13,040 I ALSO APPRECIATE YOU SPEAKING 3458 01:54:13,040 --> 01:54:16,160 UP AT THAT MEETING THAT YOU WERE 3459 01:54:16,160 --> 01:54:19,080 AT, AND WHAT I WOULD SUGGEST IS 3460 01:54:19,080 --> 01:54:24,360 THAT YOU LOOK AT THOSE SECTIONS 3461 01:54:24,360 --> 01:54:25,840 THAT -- IN THE DRAFT STRATEGIC 3462 01:54:25,840 --> 01:54:27,480 PLAN THAT YOU ALL HAVE AS PART 3463 01:54:27,480 --> 01:54:28,600 OF THE MATERIALS FOR THE MEETING 3464 01:54:28,600 --> 01:54:30,800 THATTING SUSAN JUST MENTIONED, 3465 01:54:30,800 --> 01:54:32,200 AND PERHAPS SUSAN CAN HAVE 3466 01:54:32,200 --> 01:54:34,280 SOMEONE FROM THE STAFF ACTUALLY 3467 01:54:34,280 --> 01:54:35,360 POINT JALYNN TO THE PLACES WHERE 3468 01:54:35,360 --> 01:54:37,000 IT'S MENTIONED. 3469 01:54:37,000 --> 01:54:40,080 AND THEN WITH THAT IN MIND, 3470 01:54:40,080 --> 01:54:43,120 DECIDE WHETHER OR NOT IT NEEDS 3471 01:54:43,120 --> 01:54:45,520 ADDITIONAL HIGHLIGHTING AND MAKE 3472 01:54:45,520 --> 01:54:47,280 SOME SUGGESTIONS AS TO WHERE 3473 01:54:47,280 --> 01:54:48,000 THAT MIGHT BE DONE. 3474 01:54:48,000 --> 01:54:49,400 >>WE ALSO MIGHT BE ABLE TO 3475 01:54:49,400 --> 01:54:50,680 BRING THAT OUT A LITTLE BIT IN 3476 01:54:50,680 --> 01:54:51,160 THE INTRODUCTION. 3477 01:54:51,160 --> 01:54:53,000 I WOULD SAY THAT IS SOMETHING 3478 01:54:53,000 --> 01:54:54,400 THAT HAS BEEN A STRONG THEME. 3479 01:54:54,400 --> 01:54:55,600 >>RIGHT. 3480 01:54:55,600 --> 01:54:58,840 AND SO I'M ACTUALLY GOING TO BE 3481 01:54:58,840 --> 01:54:59,920 TAKING A HARD LOOK AT THE 3482 01:54:59,920 --> 01:55:01,280 INTRODUCTION SO I'LL CERTAINLY 3483 01:55:01,280 --> 01:55:03,840 TAKE THAT POINT AS I READ THAT 3484 01:55:03,840 --> 01:55:04,720 INTRODUCTION AND MAKE SURE THAT 3485 01:55:04,720 --> 01:55:05,280 WE CALL THAT OUT. 3486 01:55:05,280 --> 01:55:15,840 WE'VE HEARD OVER AND OVER AGAIN 3487 01:55:16,800 --> 01:55:18,360 MENTAL HEALTH CHALLENGES ARE A 3488 01:55:18,360 --> 01:55:20,800 MAJOR COMPONENT THAT INDIVIDUALS 3489 01:55:20,800 --> 01:55:22,120 IN COMMUNITIES WITH AUTISM NEED 3490 01:55:22,120 --> 01:55:24,080 HELP WITH, WHETHER IT BE ANXIETY 3491 01:55:24,080 --> 01:55:26,040 OR DEPRESSION OR OTHER 3492 01:55:26,040 --> 01:55:29,000 MANIFESTATIONS. 3493 01:55:29,000 --> 01:55:30,200 SO WE'LL WANT TO MAKE SURE 3494 01:55:30,200 --> 01:55:31,400 THAT'S FEATURED IN A WAY THAT 3495 01:55:31,400 --> 01:55:32,240 MAKES SURE THAT IT IS 3496 01:55:32,240 --> 01:55:37,840 APPROPRIATE TO THE LEVEL OF 3497 01:55:37,840 --> 01:55:38,040 CONCERN. 3498 01:55:38,040 --> 01:55:39,280 >>I THINK WE ALSO NEED TO LOOK 3499 01:55:39,280 --> 01:55:40,880 AT FAMILIES IN CONJUNCTION WITH 3500 01:55:40,880 --> 01:55:42,480 THIS, BECAUSE MANY OF THE MENTAL 3501 01:55:42,480 --> 01:55:43,400 HEALTH PROBLEMS FOR THE 3502 01:55:43,400 --> 01:55:45,280 CAREGIVERS AND BY THE SIBLINGS. 3503 01:55:45,280 --> 01:55:47,760 AND IT MAKES ME WONDER, AND I 3504 01:55:47,760 --> 01:55:49,920 APPRECIATE SO VERY MUCH THE 3505 01:55:49,920 --> 01:55:53,640 PERHAPS MENTION AT THE 3506 01:55:53,640 --> 01:55:54,640 BEGINNING, BUT SHOULD IT BE ITS 3507 01:55:54,640 --> 01:55:57,000 OWN TOPIC IN OUR REPORT SO 3508 01:55:57,000 --> 01:55:59,160 PEOPLE WHO ARE INTERESTED IN 3509 01:55:59,160 --> 01:56:01,600 THIS CAN SEE THAT IT IS A 3510 01:56:01,600 --> 01:56:02,960 SUBJECT IN AND OF ITSELF RATHER 3511 01:56:02,960 --> 01:56:04,480 THAN GOING INTO A LOT OF 3512 01:56:04,480 --> 01:56:05,880 INDIVIDUAL PLACES TO TRY TO FIND 3513 01:56:05,880 --> 01:56:11,880 OUT WHERE THAT INFORMATION 3514 01:56:11,880 --> 01:56:12,120 RESIDES. 3515 01:56:12,120 --> 01:56:13,760 >>THANK YOU, WE WILL TAKE THOSE 3516 01:56:13,760 --> 01:56:14,480 COMMENTS INTO CONSIDERATION. 3517 01:56:14,480 --> 01:56:18,320 YOU WILL ALL HAVE AN OPPORTUNITY 3518 01:56:18,320 --> 01:56:19,320 TO COMMENT ON THE NEW DRAFT SO 3519 01:56:19,320 --> 01:56:20,440 PLEASE FEEL FREE TO SHARE YOUR 3520 01:56:20,440 --> 01:56:23,480 COMMENTS ON THAT. 3521 01:56:23,480 --> 01:56:24,320 JENNIFER. 3522 01:56:24,320 --> 01:56:29,800 >>HI, JENNIFER JOHNSON WITH THE 3523 01:56:29,800 --> 01:56:32,600 ADMINISTRATION FOR COMMUNITY 3524 01:56:32,600 --> 01:56:33,240 LIVING. 3525 01:56:33,240 --> 01:56:37,160 I WANT TO SHARE -- CO-OCCURRING 3526 01:56:37,160 --> 01:56:37,760 HEALTH DISABILITIES AND OTHER 3527 01:56:37,760 --> 01:56:38,400 TYPES OF DISABILITIES. 3528 01:56:38,400 --> 01:56:39,680 WE HAVE BEEN DOING A LINE OF 3529 01:56:39,680 --> 01:56:41,640 WORK IN THIS AREA RECOGNIZING 3530 01:56:41,640 --> 01:56:44,240 THAT THIS IS ONE OF THE MOST 3531 01:56:44,240 --> 01:56:46,320 UNSERVED AND UNDERSERVED 3532 01:56:46,320 --> 01:56:48,560 POPULATIONS OF PEOPLE, AND WE 3533 01:56:48,560 --> 01:56:51,600 HAVE A COUPLE PROJECTS THAT WERE 3534 01:56:51,600 --> 01:56:52,560 WE'RE SUPPORTING RIGHT NOW. 3535 01:56:52,560 --> 01:56:54,560 WE JUST LAUNCHED A NATIONAL 3536 01:56:54,560 --> 01:56:59,280 CENATIONALCENTER ON CO-OCCURRINL 3537 01:56:59,280 --> 01:57:00,760 HEALTH DISABILITIES AND OD/DD. 3538 01:57:00,760 --> 01:57:01,920 THAT WAS AWARDED TO THE 3539 01:57:01,920 --> 01:57:03,360 UNIVERSITY OF CINCINNATI 3540 01:57:03,360 --> 01:57:05,000 UNIVERSITY CENTER FOR EXCELLENCE 3541 01:57:05,000 --> 01:57:06,400 IN DEVELOPMENTAL DISABILITIES, 3542 01:57:06,400 --> 01:57:07,160 AND THEY'RE WORKING WITH A 3543 01:57:07,160 --> 01:57:08,960 NUMBER OF PARTNERS ON THAT 3544 01:57:08,960 --> 01:57:10,240 PROJECT, AND THEY'RE JUST 3545 01:57:10,240 --> 01:57:10,960 GETTING UNDERWAY. 3546 01:57:10,960 --> 01:57:15,160 AND WE'RE ALSO SUPPORTING FIVE 3547 01:57:15,160 --> 01:57:18,360 STATE TEAMS AND THE TEAMS 3548 01:57:18,360 --> 01:57:21,480 INCLUDE STAFF FROM THE DD 3549 01:57:21,480 --> 01:57:22,640 AGENCIES AND THE STATE MENTAL 3550 01:57:22,640 --> 01:57:25,000 HEALTH AGENCIES TO TRY TO BREAK 3551 01:57:25,000 --> 01:57:26,680 DOWN THE SILOS THAT EXIST IN 3552 01:57:26,680 --> 01:57:28,840 STATES TO BETTER SERVE THIS 3553 01:57:28,840 --> 01:57:29,280 POPULATION. 3554 01:57:29,280 --> 01:57:31,440 WE HEAR A LOT ABOUT THAT BEING A 3555 01:57:31,440 --> 01:57:33,560 BARRIER TO SERVICES AND 3556 01:57:33,560 --> 01:57:34,560 SUPPORTS, SO THOSE STATE TEAMS 3557 01:57:34,560 --> 01:57:36,360 ARE WORKING TO BREAK THOSE DOWN. 3558 01:57:36,360 --> 01:57:37,720 SO JUST WANTED TO SHARE A LITTLE 3559 01:57:37,720 --> 01:57:39,160 BIT ABOUT WHAT WE'RE DOING IN 3560 01:57:39,160 --> 01:57:40,640 THE SPACE. 3561 01:57:40,640 --> 01:57:41,960 >>WE APPRECIATE THAT, JENNIFER. 3562 01:57:41,960 --> 01:57:43,920 THANK YOU SO MUCH. 3563 01:57:43,920 --> 01:57:45,560 DENA, DO YOU HAVE A COMMENT? 3564 01:57:45,560 --> 01:57:47,280 >>YES, I'LL BE SUBMITTING 3565 01:57:47,280 --> 01:57:48,480 COMMENTS BUT I JUST WANTED TO 3566 01:57:48,480 --> 01:57:50,080 PIGGY BACK ON TO THIS AND I'M 3567 01:57:50,080 --> 01:57:51,360 WONDERING IF WE NEED TO CAPTURE 3568 01:57:51,360 --> 01:57:53,760 SOME OF THE INFORMATION THAT'S 3569 01:57:53,760 --> 01:57:55,160 MORE DISSEMINATED IN A MORE 3570 01:57:55,160 --> 01:57:56,480 CENTRAL WAY, BECAUSE I THINK WE 3571 01:57:56,480 --> 01:57:59,120 NEED TO TALK ABOUT RAPID AND 3572 01:57:59,120 --> 01:58:02,040 REPEATED MISDIAGNOSIS OF 3573 01:58:02,040 --> 01:58:03,160 AUTISTIC PEOPLE WITH MENTAL 3574 01:58:03,160 --> 01:58:04,440 HEALTH CONDITIONS, ALTHOUGH THEY 3575 01:58:04,440 --> 01:58:08,080 CAN CO-OCCUR, MANY, MANY PEOPLE 3576 01:58:08,080 --> 01:58:11,240 GET MEDICAL MALTREATMENT UNDER A 3577 01:58:11,240 --> 01:58:11,840 FALSE DIAGNOSIS BECAUSE OF THE 3578 01:58:11,840 --> 01:58:13,760 LACK OF TRAINING FOR 3579 01:58:13,760 --> 01:58:15,480 DIAGNOSTICIANS IN MENTAL HEALTH. 3580 01:58:15,480 --> 01:58:17,680 AND ALSO THE PUBLIC COMMENTS HAD 3581 01:58:17,680 --> 01:58:22,040 MANY, MANY STATEMENTS AROUND 3582 01:58:22,040 --> 01:58:24,440 MEDICATION HYPERSENSITIVITY OR 3583 01:58:24,440 --> 01:58:25,440 INEFFECTIVENESS IN THIS 3584 01:58:25,440 --> 01:58:26,840 POPULATION AND THE NEED FOR MORE 3585 01:58:26,840 --> 01:58:28,280 RESEARCH AROUND HOW AUTISTIC 3586 01:58:28,280 --> 01:58:29,400 PEOPLE PROCESS MEDICATIONS. 3587 01:58:29,400 --> 01:58:31,280 SO I'M IN FAVOR OF IT, AT LEAST, 3588 01:58:31,280 --> 01:58:33,080 YOU KNOW, GRABBING EVERYTHING 3589 01:58:33,080 --> 01:58:36,560 THAT'S KIND OF SCATTERED AND 3590 01:58:36,560 --> 01:58:39,240 COMPACTING IT INTO ONE SECTION. 3591 01:58:39,240 --> 01:58:40,200 >>THANK YOU FOR SHARING THAT, 3592 01:58:40,200 --> 01:58:41,440 AND WE LOOK FORWARD TO SEEING 3593 01:58:41,440 --> 01:58:42,640 COMMENTS FROM YOU AND OTHERS ON 3594 01:58:42,640 --> 01:58:44,080 THAT TOPIC. 3595 01:58:44,080 --> 01:58:47,800 >>DENA, WHILE WE HAVE YOU HERE, 3596 01:58:47,800 --> 01:58:49,280 WHAT'S YOUR VISION FOR WHAT THAT 3597 01:58:49,280 --> 01:58:51,160 TOPIC WOULD BE? 3598 01:58:51,160 --> 01:58:54,240 I CAN SEE ACTUALLY THAT FALLING 3599 01:58:54,240 --> 01:58:56,640 INTO ONE OF THE EXISTING 3600 01:58:56,640 --> 01:58:59,680 PRIORITY AREAS, WHETHER IT BE 3601 01:58:59,680 --> 01:59:01,240 CONSIDERED UNDER LIFESPAN ISSUES 3602 01:59:01,240 --> 01:59:04,920 OR ACTUALLY UNDER BIOLOGY, BUT 3603 01:59:04,920 --> 01:59:06,320 I'M WONDERING WHAT YOUR THOUGHTS 3604 01:59:06,320 --> 01:59:07,880 ARE ABOUT WHERE THAT MIGHT FIT 3605 01:59:07,880 --> 01:59:10,600 IN AS A UNIFIED SECTION, THOSE 3606 01:59:10,600 --> 01:59:11,800 DIFFERENT PIECES THAT YOU JUST 3607 01:59:11,800 --> 01:59:12,240 MENTIONED. 3608 01:59:12,240 --> 01:59:13,640 YOU DON'T HAVE TO HAVE AN ANSWER 3609 01:59:13,640 --> 01:59:14,960 NOW, BUT THINK ABOUT THAT AS 3610 01:59:14,960 --> 01:59:15,840 YOU -- UNLESS YOU HAVE AN ANSWER 3611 01:59:15,840 --> 01:59:16,000 NOW. 3612 01:59:16,000 --> 01:59:17,240 >>WELL, I WOULD SAY THE 3613 01:59:17,240 --> 01:59:18,760 RESEARCH SUPPORTS THAT THIS IS 3614 01:59:18,760 --> 01:59:20,000 THE RULE RATHER THAN THE 3615 01:59:20,000 --> 01:59:21,840 EXCEPTION FOR AUTISTIC WOMEN OR 3616 01:59:21,840 --> 01:59:23,880 PEOPLE WHO WERE ASSIGNED FEMALE 3617 01:59:23,880 --> 01:59:24,160 AT BIRTH. 3618 01:59:24,160 --> 01:59:26,440 I THINK THAT'S A HUGE BARRIER TO 3619 01:59:26,440 --> 01:59:30,040 THEM ACCESSING PROPER SERVICES. 3620 01:59:30,040 --> 01:59:32,280 PERSONALLY, I SPENT FIVE TOOR 3621 01:59:32,280 --> 01:59:34,400 TEU US YEARS ON LITHIUM FOR A 3622 01:59:34,400 --> 01:59:35,320 CONDITION I NEVER HAD AND I CAN 3623 01:59:35,320 --> 01:59:38,240 TELL YOU THAT THAT MEDICAL 3624 01:59:38,240 --> 01:59:39,120 MALTREATMENT IS REALLY BAD. 3625 01:59:39,120 --> 01:59:40,960 I ALSO THINK UNDER MENTAL 3626 01:59:40,960 --> 01:59:42,040 HEALTH, WE NEED TO LOOK AT 3627 01:59:42,040 --> 01:59:43,440 POVERTY AND THE TRAUMA OF LIVING 3628 01:59:43,440 --> 01:59:47,680 IN A CHRONIC STATE OF TRAUMA OF 3629 01:59:47,680 --> 01:59:50,280 POFPOVERTY. 3630 01:59:50,280 --> 01:59:51,760 WE SEE THAT IN OTHER LITERATURE 3631 01:59:51,760 --> 01:59:53,120 BUT NOT AS IT APPLIES TO THE 3632 01:59:53,120 --> 01:59:53,880 AUTISM COMMUNITY SO THAT COULD 3633 01:59:53,880 --> 01:59:55,760 BE A CALL TO ACTION IN TERMS OF 3634 01:59:55,760 --> 01:59:56,640 RESEARCHING THE TRAUMA 3635 01:59:56,640 --> 01:59:57,520 ASSOCIATED WITH LOW INCOME. 3636 01:59:57,520 --> 02:00:00,560 >>I THINK IT WILL BE 3637 02:00:00,560 --> 02:00:01,600 IMPORTANT -- TO ME, ON THE FACE 3638 02:00:01,600 --> 02:00:03,160 OF IT, DENA, YOU BROUGHT UP 3639 02:00:03,160 --> 02:00:04,040 SEVERAL DIFFERENT IDEAS THAT 3640 02:00:04,040 --> 02:00:08,160 FALL INTO DIFFERENT PARTS OF THE 3641 02:00:08,160 --> 02:00:09,480 PLAN AND INDEED I THINK MANY OF 3642 02:00:09,480 --> 02:00:11,080 THEM ARE COVERED IN THE PLAN BUT 3643 02:00:11,080 --> 02:00:12,520 AS YOU POINT OUT MANY OF THEM 3644 02:00:12,520 --> 02:00:14,280 ARE NOT SO IT WILL BE USEFUL FOR 3645 02:00:14,280 --> 02:00:15,560 YOU TO THINK ABOUT THAT AS YOU 3646 02:00:15,560 --> 02:00:17,200 LOOK OVER THE PLAN DOCUMENTS AND 3647 02:00:17,200 --> 02:00:20,800 AGAIN JUST LIKE I SUGGESTED WITH 3648 02:00:20,800 --> 02:00:23,160 DENA -- SORRY -- WITH JALYNN, 3649 02:00:23,160 --> 02:00:26,600 THAT YOU CONSIDER HOW BEST TO 3650 02:00:26,600 --> 02:00:27,720 INTEGRATE IT INTO THE STRUCTURE. 3651 02:00:27,720 --> 02:00:29,040 I THINK ONE CHALLENGE AT THIS 3652 02:00:29,040 --> 02:00:30,600 LATE DATE IS IF WE START MUCKING 3653 02:00:30,600 --> 02:00:32,000 WITH THE STRUCTURE TOO MUCH, WE 3654 02:00:32,000 --> 02:00:34,960 WILL END UP DELAYING THE REPORT 3655 02:00:34,960 --> 02:00:36,120 ANYMORE. 3656 02:00:36,120 --> 02:00:37,240 SO THINKING ABOUT HOW THESE 3657 02:00:37,240 --> 02:00:39,440 COMMENTS CAN FIT IN WITH THE 3658 02:00:39,440 --> 02:00:40,280 EXISTING STRUCTURE WILL BE 3659 02:00:40,280 --> 02:00:40,920 HELPFUL. 3660 02:00:40,920 --> 02:00:41,160 THANKS. 3661 02:00:41,160 --> 02:00:41,760 >>I WILL BE FOCUSED. 3662 02:00:41,760 --> 02:00:42,280 THANK YOU. 3663 02:00:42,280 --> 02:00:43,440 >>THANK YOU. 3664 02:00:43,440 --> 02:00:44,560 MITCHELL, DO YOU HAVE A COMMENT 3665 02:00:44,560 --> 02:00:45,560 ON BEHALF OF SAMHSA? 3666 02:00:45,560 --> 02:00:47,720 >>YES, I WAS JUST GOING TO SAY, 3667 02:00:47,720 --> 02:00:49,160 WE SUPPORTED AND I BELIEVE I 3668 02:00:49,160 --> 02:00:52,800 SHARED WITH IACC STAFF TWO 3669 02:00:52,800 --> 02:00:54,760 ARTICLES ON -- IN PSYCHIATRIC 3670 02:00:54,760 --> 02:00:57,960 SERVICES, ONE ON PERSONS WITH 3671 02:00:57,960 --> 02:00:58,680 INTELLECTUAL DEVELOPMENTAL 3672 02:00:58,680 --> 02:00:59,240 DISABILITIES IN THE HEALTH 3673 02:00:59,240 --> 02:01:01,560 SYSTEM, POLICIES AND SYSTEMS 3674 02:01:01,560 --> 02:01:02,560 CONSIDERATIONS AND ONE ON 3675 02:01:02,560 --> 02:01:03,640 CLINICAL CONSIDERATIONS. 3676 02:01:03,640 --> 02:01:06,160 SO SAMHSA HAS BEEN DOING WORK IN 3677 02:01:06,160 --> 02:01:07,560 TRYING TO SUPPORT WORK IN THIS 3678 02:01:07,560 --> 02:01:07,760 AREA. 3679 02:01:07,760 --> 02:01:09,080 >>THANK YOU FOR SHARING THOSE 3680 02:01:09,080 --> 02:01:10,280 AND WE'LL FLAG THOSE FOR STAFF 3681 02:01:10,280 --> 02:01:12,040 TO LOOK AT THEM AND SEE HOW THEY 3682 02:01:12,040 --> 02:01:15,560 FIT IN. 3683 02:01:15,560 --> 02:01:17,720 SO THANK YOU FOR THAT. 3684 02:01:17,720 --> 02:01:17,960 IVANOVA? 3685 02:01:17,960 --> 02:01:19,920 >>THIS IS IVANOVA SMITH. 3686 02:01:19,920 --> 02:01:23,120 AND I JUST WANTED TO EMPHASIZE 3687 02:01:23,120 --> 02:01:25,960 THE IMPORTANCE OF MAKING IT SO 3688 02:01:25,960 --> 02:01:27,800 THAT TREATMENTS FOR MENTAL 3689 02:01:27,800 --> 02:01:31,640 HEALTH DISABILITIES AND AUTISM, 3690 02:01:31,640 --> 02:01:38,080 THAT INTERSECT, THAT THERE'S A 3691 02:01:38,080 --> 02:01:40,520 TREATMENT FOR TRAUMA-INFORMED 3692 02:01:40,520 --> 02:01:41,600 AND THAT WOULD NOT CAUSE MORE 3693 02:01:41,600 --> 02:01:43,440 TRAUMA IN A PERSON AND LOOKING 3694 02:01:43,440 --> 02:01:48,160 AT HOW DO WE MAKE PSYCHIATRIC 3695 02:01:48,160 --> 02:01:49,680 TREATMENT FOR MENTAL HEALTH 3696 02:01:49,680 --> 02:01:52,080 DISABILITIES LESS TRAUMATIZING 3697 02:01:52,080 --> 02:01:54,720 AND NOT USING 3698 02:01:54,720 --> 02:01:57,760 INSTITUTIONALIZATION, BUT TRYING 3699 02:01:57,760 --> 02:02:00,320 TO FIND TREATMENTS THAT ARE 3700 02:02:00,320 --> 02:02:01,360 COMFORTING AND POSITIVE FOR THE 3701 02:02:01,360 --> 02:02:03,320 PERSON AND DOES NOT RESTRICT 3702 02:02:03,320 --> 02:02:03,560 AUTONOMY. 3703 02:02:03,560 --> 02:02:05,640 THANK YOU. 3704 02:02:05,640 --> 02:02:07,960 >>THANK YOU, IVANOVA. 3705 02:02:07,960 --> 02:02:13,360 JULIE TAYLOR. 3706 02:02:13,360 --> 02:02:14,400 >>HI, EVERYBODY. 3707 02:02:14,400 --> 02:02:15,320 JUST A QUICK COMMENT. 3708 02:02:15,320 --> 02:02:18,040 I AGREE THAT MENTAL HEALTH 3709 02:02:18,040 --> 02:02:22,000 ISSUES ARE SUPER FOREIGN IMPORR 3710 02:02:22,000 --> 02:02:23,200 US TO BE PULLING OUT OF THE 3711 02:02:23,200 --> 02:02:24,400 REPORT BUT I'M ALSO REALLY 3712 02:02:24,400 --> 02:02:26,040 COGNIZANT OF YOUR POSITION, 3713 02:02:26,040 --> 02:02:27,480 JOSH, THAT WE DON'T WANT TO MUCK 3714 02:02:27,480 --> 02:02:31,920 THINGS UP T TOO MUCH AT THIS 3715 02:02:31,920 --> 02:02:33,680 STAGE, SO MAYBE AS A COMPROMISE 3716 02:02:33,680 --> 02:02:35,080 TO THINK ABOUT MENTAL HEALTH AS 3717 02:02:35,080 --> 02:02:36,320 A CROSS-CUTTING THEME WHERE WE 3718 02:02:36,320 --> 02:02:37,760 COULD SORT OF HIGHLIGHT WHERE IT 3719 02:02:37,760 --> 02:02:39,120 FALLS IN THE DIFFERENT SECTIONS 3720 02:02:39,120 --> 02:02:40,520 THAT ARE ALREADY THERE AND MAYBE 3721 02:02:40,520 --> 02:02:41,280 AS WE'RE ALL KIND OF LOOKING 3722 02:02:41,280 --> 02:02:42,480 THROUGH THIS DRAFT OF THE 3723 02:02:42,480 --> 02:02:43,360 DOCUMENT, WE COULD SORT OF -- 3724 02:02:43,360 --> 02:02:44,880 FOR THOSE OF US THAT THINK THAT 3725 02:02:44,880 --> 02:02:46,560 MIGHT BE A GOOD WAY TO GO ABOUT 3726 02:02:46,560 --> 02:02:48,080 IT, WE CAN SORT OF KEEP AN EYE 3727 02:02:48,080 --> 02:02:50,040 OUT FOR THAT AND SEE IF THAT 3728 02:02:50,040 --> 02:02:53,120 FEELS LIKE THAT MIGHT BE A GOOD 3729 02:02:53,120 --> 02:02:54,240 FIT WITHOUT SORT OF MAKING IT 3730 02:02:54,240 --> 02:02:55,280 ITS OWN QUESTION AT THIS POINT. 3731 02:02:55,280 --> 02:02:57,080 >>JULIE, THAT'S AN INTERESTING 3732 02:02:57,080 --> 02:03:00,800 SUX, IT CERTSUGGESTION, IT CERTD 3733 02:03:00,800 --> 02:03:02,760 BE HELPFUL IF WE NEEDED TO TIE 3734 02:03:02,760 --> 02:03:03,920 ALL THOSE BITS TOGETHER. 3735 02:03:03,920 --> 02:03:05,320 CERTAINLY IT IS A CROSS-CUTTING 3736 02:03:05,320 --> 02:03:07,440 THEME FROM A STRUCTURAL 3737 02:03:07,440 --> 02:03:07,760 PERSPECTIVE. 3738 02:03:07,760 --> 02:03:10,240 WE DO WANT TO KNOW THE GENETIC 3739 02:03:10,240 --> 02:03:10,880 BIOLOGICAL AND ENVIRONMENTAL 3740 02:03:10,880 --> 02:03:11,880 FACTORS THAT LEAD TO IT. 3741 02:03:11,880 --> 02:03:15,040 WE WANT TO KNOW WHAT SERVICES 3742 02:03:15,040 --> 02:03:19,120 ARE NECESSARY TO HELP DIMINISH 3743 02:03:19,120 --> 02:03:21,200 THE IMPACT OF MENTAL HEALTH 3744 02:03:21,200 --> 02:03:22,600 CHALLENGES IN INDIVIDUALS WITH 3745 02:03:22,600 --> 02:03:24,080 AUTISM, ET CETERA, SO YOU CAN 3746 02:03:24,080 --> 02:03:25,640 SEE HOW THAT MIGHT WORK VERY 3747 02:03:25,640 --> 02:03:26,080 WELL. 3748 02:03:26,080 --> 02:03:29,040 SO WE CAN TAKE THAT, THAT'S A 3749 02:03:29,040 --> 02:03:31,520 VERY GOOD SUGGESTION. 3750 02:03:31,520 --> 02:03:33,400 >>I AGREE, THAT IS A 3751 02:03:33,400 --> 02:03:34,160 POTENTIALLY GOOD SUGGESTION. 3752 02:03:34,160 --> 02:03:36,040 WITH OUR CROSS-CUTTING THEME, 3753 02:03:36,040 --> 02:03:39,880 SOMETHING I WANT TO BRING TO 3754 02:03:39,880 --> 02:03:40,640 YOUR ATTENTION AS A COMMITTEE IS 3755 02:03:40,640 --> 02:03:41,840 PART OF THE REASON WE HAVE BEEN 3756 02:03:41,840 --> 02:03:42,920 TRYING TO STICK WITH A STRUCTURE 3757 02:03:42,920 --> 02:03:44,240 IS BECAUSE WE'VE BEEN TRACKING 3758 02:03:44,240 --> 02:03:45,880 RESEARCH OVER TIME ACCORDING TO 3759 02:03:45,880 --> 02:03:46,880 THAT STRUCTURE AND WE DON'T WANT 3760 02:03:46,880 --> 02:03:48,200 TO CHANGE THE STRUCTURE AND THEN 3761 02:03:48,200 --> 02:03:49,480 LOSE OUR TRACKING THAT WE'VE 3762 02:03:49,480 --> 02:03:51,480 BEEN DOING FOR YEARS AND YEARS, 3763 02:03:51,480 --> 02:03:53,120 BUT WHEN WE ADD CROSS-CUTTING 3764 02:03:53,120 --> 02:03:54,760 THEMES, THAT GIVES US ANOTHER 3765 02:03:54,760 --> 02:03:56,120 TAG TO TRACK WITH, SO FOR 3766 02:03:56,120 --> 02:03:57,840 EXAMPLE, IF YOU WANTED US TO 3767 02:03:57,840 --> 02:03:59,120 PULL ALL THE RESEARCH 3768 02:03:59,120 --> 02:04:03,000 INFORMATION ON MENTAL HEALTH 3769 02:04:03,000 --> 02:04:04,280 INTO AN ANALYSIS, WE CAN DO IT 3770 02:04:04,280 --> 02:04:05,280 WITHOUT THE CROSS-CUTTING THEME 3771 02:04:05,280 --> 02:04:08,800 BUT IF WE OFFICIALLY DO IT AS A 3772 02:04:08,800 --> 02:04:09,960 CROSS-CUTTING THEME THAN WE 3773 02:04:09,960 --> 02:04:10,640 WOULD AUTOMATICALLY BE TAGGING 3774 02:04:10,640 --> 02:04:12,680 ALL THE RESEARCH THAT IS MENTAL 3775 02:04:12,680 --> 02:04:13,160 HEALTH IN ONE PLACE. 3776 02:04:13,160 --> 02:04:14,600 SO THAT IS A GOOD SUGGESTION AND 3777 02:04:14,600 --> 02:04:15,920 WE CAN CERTAINLY CONSIDER IF 3778 02:04:15,920 --> 02:04:17,120 IT'S SOMETHING THE COMMITTEE 3779 02:04:17,120 --> 02:04:20,400 WOULD LIKE TO DO. 3780 02:04:20,400 --> 02:04:21,520 WAS THERE ANOTHER QUESTION? 3781 02:04:21,520 --> 02:04:25,440 I THINK I SAW A HAND AND THEN IT 3782 02:04:25,440 --> 02:04:25,920 DISAPPEARED. 3783 02:04:25,920 --> 02:04:27,280 >>THIS IS SAM. 3784 02:04:27,280 --> 02:04:29,400 I ACTUALLY PUT IN THE CHAT BUT I 3785 02:04:29,400 --> 02:04:30,800 HAD RAISED MY HAND TO SAY 3786 02:04:30,800 --> 02:04:33,480 EXACTLY THE SAME THING THAT 3787 02:04:33,480 --> 02:04:34,680 JENNIFER DID, SO I THINK IT 3788 02:04:34,680 --> 02:04:37,160 MIGHT MAKE SENSE TO PUT AS A 3789 02:04:37,160 --> 02:04:38,160 CROSS-CUTTING THEME BECAUSE IT 3790 02:04:38,160 --> 02:04:42,520 DOES TOUCH ON BIOLOGY, 3791 02:04:42,520 --> 02:04:44,600 TREATMENT, SCREENINGS, LIFESPAN, 3792 02:04:44,600 --> 02:04:46,160 SERVICES AND SUPPORTS TO SO MANY 3793 02:04:46,160 --> 02:04:47,240 DIFFERENT QUESTIONS, BUT YOU 3794 02:04:47,240 --> 02:04:50,640 KNOW, PUTTING IT AS A THEME 3795 02:04:50,640 --> 02:04:53,200 MAKES A LOT OF SENSE. 3796 02:04:53,200 --> 02:04:53,760 >>THANK YOU. 3797 02:04:53,760 --> 02:04:55,240 SO I'M HEARING QUITE A BIT OF 3798 02:04:55,240 --> 02:04:55,920 SUPPORT FOR THAT. 3799 02:04:55,920 --> 02:04:57,440 IS THERE ANYONE ON THE COMMITTEE 3800 02:04:57,440 --> 02:04:58,600 WHO'S NOT IN FAVOR OF MAKING 3801 02:04:58,600 --> 02:05:00,240 THAT A CROSS-CUTTING THEME? 3802 02:05:00,240 --> 02:05:03,600 BECAUSE IT'S SOMETHING WE COULD 3803 02:05:03,600 --> 02:05:05,560 WORK ON IN THE NEXT VERSION. 3804 02:05:05,560 --> 02:05:07,680 AND IS THAT HELEN SAYING NO OR 3805 02:05:07,680 --> 02:05:10,880 HELEN HAVING A QUESTION? 3806 02:05:10,880 --> 02:05:12,400 >>HELEN HAVING A QUESTION. 3807 02:05:12,400 --> 02:05:17,320 >>OH, OKAY. 3808 02:05:17,320 --> 02:05:17,520 YES -- 3809 02:05:17,520 --> 02:05:18,160 >>IT'S VERY QUICK. 3810 02:05:18,160 --> 02:05:19,560 >>GO AHEAD, YES. 3811 02:05:19,560 --> 02:05:22,120 >>I THINK HAVING IT AS A 3812 02:05:22,120 --> 02:05:23,120 CROSS-CUTTING THEME MAKES A 3813 02:05:23,120 --> 02:05:25,520 GREAT DEAL OF SENSE, BUT THEN AT 3814 02:05:25,520 --> 02:05:29,160 THE SAME TIME, I WOULD SAY 3815 02:05:29,160 --> 02:05:33,160 TALKING ABOUT THE VARIATION IN 3816 02:05:33,160 --> 02:05:35,120 INTELLECTUAL FUNCTIONING IS 3817 02:05:35,120 --> 02:05:37,120 ANOTHER CRITICAL CROSS-CUTTING 3818 02:05:37,120 --> 02:05:41,280 THEME THAT'S REALLY ON A PATH 3819 02:05:41,280 --> 02:05:42,280 BECAUSE IT ALSO COVERS THE FULL 3820 02:05:42,280 --> 02:05:44,480 RANGE OF TOPICS. 3821 02:05:44,480 --> 02:05:45,760 >>THANK YOU FOR THAT 3822 02:05:45,760 --> 02:05:47,400 SUGGESTION. 3823 02:05:47,400 --> 02:05:48,720 SO IT'S CERTAINLY POSSIBLE, I 3824 02:05:48,720 --> 02:05:50,040 GUESS WE DON'T WANT TO GET TO 3825 02:05:50,040 --> 02:05:51,480 THE POINT WHERE WE HAVE SO MANY 3826 02:05:51,480 --> 02:05:54,080 DIFFERENT ONES THAT THINGS GET 3827 02:05:54,080 --> 02:05:54,840 LOST. 3828 02:05:54,840 --> 02:05:57,720 BUT MAYBE WE WILL HAVE A 3829 02:05:57,720 --> 02:05:59,000 DISCUSSION ABOUT THAT AND TRY TO 3830 02:05:59,000 --> 02:06:01,320 FIGURE OUT WHAT WE CAN DO. 3831 02:06:01,320 --> 02:06:02,800 I AGREE, THOUGH, THAT THAT IS 3832 02:06:02,800 --> 02:06:04,840 ANOTHER THEME THAT DOES TRICKLE 3833 02:06:04,840 --> 02:06:05,720 THROUGH MANY PART OF THE 3834 02:06:05,720 --> 02:06:06,640 STRATEGIC PLAN THAT WE HAVE 3835 02:06:06,640 --> 02:06:08,520 TRIED TO ADDRESS, BUT WELCOME 3836 02:06:08,520 --> 02:06:10,160 YOUR COMMENTS WHEN YOU READ THE 3837 02:06:10,160 --> 02:06:10,880 DRAFT. 3838 02:06:10,880 --> 02:06:11,360 JALYNN? 3839 02:06:11,360 --> 02:06:13,880 >>THE CROSS-CUTTING THEME SEEMS 3840 02:06:13,880 --> 02:06:15,280 LIKE A VERY INTERESTING WAY OF 3841 02:06:15,280 --> 02:06:18,120 APPROACHING IT. 3842 02:06:18,120 --> 02:06:19,320 OF I WOULD LIKE TO UNDERSTAND 3843 02:06:19,320 --> 02:06:21,120 WHAT THAT MIGHT LOOK LIKE IF 3844 02:06:21,120 --> 02:06:21,760 SOMEONE HAPPENED TO BE LOOKING 3845 02:06:21,760 --> 02:06:24,840 AT THIS PLAN TO SEE WHAT IS 3846 02:06:24,840 --> 02:06:26,040 HAPPENING, WHAT THE ATTITUDES 3847 02:06:26,040 --> 02:06:26,360 ARE. 3848 02:06:26,360 --> 02:06:28,000 IS IT SOMETHING THAT IS 3849 02:06:28,000 --> 02:06:29,960 HIGHLIGHTED IN A PARTICULAR 3850 02:06:29,960 --> 02:06:31,960 COLOR AS ONE GOES THROUGH ALL OF 3851 02:06:31,960 --> 02:06:34,000 THESE THINGS, SO ANY OF THE 3852 02:06:34,000 --> 02:06:36,560 MENTIONS CAN BE CITED OR HOW DO 3853 02:06:36,560 --> 02:06:39,520 WE GET INTO IT? 3854 02:06:39,520 --> 02:06:40,840 BECAUSE SOMETIMES LOOKING AT 3855 02:06:40,840 --> 02:06:44,880 THESE REPORTS, THEY'RE FAIRLY 3856 02:06:44,880 --> 02:06:45,120 WEIGHTY. 3857 02:06:45,120 --> 02:06:46,200 I'VE GOT SOME OF THE CHAPTERS IN 3858 02:06:46,200 --> 02:06:47,520 FRONT OF ME RIGHT NOW, AND GOING 3859 02:06:47,520 --> 02:06:49,000 THROUGH ALL OF THOSE THINGS TO 3860 02:06:49,000 --> 02:06:51,120 FIND OUT WHERE THERE ARE MENTAL 3861 02:06:51,120 --> 02:06:52,360 HEALTH MENTIONS OR SOME OF THE 3862 02:06:52,360 --> 02:06:55,840 OTHER TYPES OF THINGS COULD BE 3863 02:06:55,840 --> 02:06:59,120 MORE LABOR THAN PEOPLE HAVE TIME 3864 02:06:59,120 --> 02:07:02,200 TO DEVOTE AND TO TRY TO GET INTO 3865 02:07:02,200 --> 02:07:05,040 INFORMATION. 3866 02:07:05,040 --> 02:07:06,680 >>RIGHT, THAT IS THE CHALLENGE. 3867 02:07:06,680 --> 02:07:08,000 WE'RE TRYING TO BE 3868 02:07:08,000 --> 02:07:08,680 COMPREHENSIVE. 3869 02:07:08,680 --> 02:07:11,120 WE'VE GOT A REPORT THAT'S -- I 3870 02:07:11,120 --> 02:07:12,280 KNOW IT'S OVER 100 PAGES SO 3871 02:07:12,280 --> 02:07:13,760 THAT'S WHY I KNEW NOT EVERYONE 3872 02:07:13,760 --> 02:07:15,160 WAS GOING TO HAVE TIME TO READ 3873 02:07:15,160 --> 02:07:16,440 IT IN ITS ENTIRETY BEFORE THIS 3874 02:07:16,440 --> 02:07:16,680 MEETING. 3875 02:07:16,680 --> 02:07:19,680 YOU WILL SEE THAT WITH -- 3876 02:07:19,680 --> 02:07:21,840 >>WHY DON'T YOU PUT UP THAT 3877 02:07:21,840 --> 02:07:24,120 TABLE OF CONTENTS, IF YOU WILL 3878 02:07:24,120 --> 02:07:24,320 AGAIN. 3879 02:07:24,320 --> 02:07:25,480 YOU HAD IT ALREADY. 3880 02:07:25,480 --> 02:07:26,680 THAT WILL HELP, I THINK, JALYNN 3881 02:07:26,680 --> 02:07:27,960 UNDERSTAND HOW IT'S CALLED OUT 3882 02:07:27,960 --> 02:07:28,680 TO A CERTAIN DEGREE. 3883 02:07:28,680 --> 02:07:31,080 >>SO WE ALREADY HAVE THE 3884 02:07:31,080 --> 02:07:33,520 CROSS-CUTTING THEME, A NEW ONE 3885 02:07:33,520 --> 02:07:35,200 THAT'S ON PROMOTING EQUITY AND 3886 02:07:35,200 --> 02:07:36,320 REDUCING DISPARITIES. 3887 02:07:36,320 --> 02:07:37,720 WE ALREADY HAD ONE ON SEX AND 3888 02:07:37,720 --> 02:07:38,080 GENDER. 3889 02:07:38,080 --> 02:07:40,200 IF WE WERE TO CREATE ONE ON 3890 02:07:40,200 --> 02:07:41,240 MENTAL HEALTH, WE COULD, BUT AS 3891 02:07:41,240 --> 02:07:42,440 YOU SEE, WE ALREADY HAVE A LOT 3892 02:07:42,440 --> 02:07:44,320 OF CHAPTERS, SO I WOULD SAY WE 3893 02:07:44,320 --> 02:07:45,880 MIGHT NOT WANT TO MAKE A WHOLE 3894 02:07:45,880 --> 02:07:48,240 LOT OF NEW CHAPTERS AS IT WILL 3895 02:07:48,240 --> 02:07:49,880 GET HARDER AND HARDER TO READ AS 3896 02:07:49,880 --> 02:07:50,680 YOU SAID. 3897 02:07:50,680 --> 02:07:52,040 HOWEVER, IF THERE'S SOMETHING 3898 02:07:52,040 --> 02:07:53,960 REALLY IMPORTANT THAT I THINK 3899 02:07:53,960 --> 02:07:55,960 ONE OF THE DECIDING FACTORS IS, 3900 02:07:55,960 --> 02:07:57,160 IS THIS SOMETHING THAT WE WANT 3901 02:07:57,160 --> 02:07:59,160 TO TRACK SEPARATELY FOR SOME 3902 02:07:59,160 --> 02:07:59,480 REASON. 3903 02:07:59,480 --> 02:08:00,440 WITH MENTAL HEALTH, I COULD SEE 3904 02:08:00,440 --> 02:08:01,440 US WANTING TO TRACK THAT 3905 02:08:01,440 --> 02:08:03,320 INFORMATION AND HAVE IT IN ONE 3906 02:08:03,320 --> 02:08:04,520 PLACE. 3907 02:08:04,520 --> 02:08:05,440 WITH INTELLECTUAL DISABILITY, IT 3908 02:08:05,440 --> 02:08:06,720 MIGHT BE A LITTLE SUBTLE. 3909 02:08:06,720 --> 02:08:09,240 IT'S PROBABLY A PART OF, SAY, IN 3910 02:08:09,240 --> 02:08:10,200 RESEARCH, A LOT OF RESEARCH, SO 3911 02:08:10,200 --> 02:08:11,680 I DON'T KNOW IF IT WOULD REALLY 3912 02:08:11,680 --> 02:08:13,080 MAKE A HUGE DISTINCTION IF WE 3913 02:08:13,080 --> 02:08:14,280 TRIED TO PULL THAT SEPARATELY, 3914 02:08:14,280 --> 02:08:15,720 WE MIGHT NOT BE ABLE TO SEPARATE 3915 02:08:15,720 --> 02:08:17,000 IT OUT. 3916 02:08:17,000 --> 02:08:21,120 >>I THINK ALSO ONE PLACE TO 3917 02:08:21,120 --> 02:08:22,440 LOOK FOR THE CONSIDERATION OF 3918 02:08:22,440 --> 02:08:25,240 THE SPECTRUM OF INTELLECTUAL 3919 02:08:25,240 --> 02:08:27,640 FUNCTIONING WILL BE IN THE 3920 02:08:27,640 --> 02:08:31,440 INTRODUCTION WHERE WE TALK ABOUT 3921 02:08:31,440 --> 02:08:34,400 AUTISM AS A SPECTRUM, AND SO 3922 02:08:34,400 --> 02:08:36,920 THAT MIGHT BE A PLACE THAT WE 3923 02:08:36,920 --> 02:08:37,800 COULD BEEF UP THE NOTION THAT WE 3924 02:08:37,800 --> 02:08:41,640 NEED TO BE THINKING ABOUT 3925 02:08:41,640 --> 02:08:44,360 DIFFERENT LEVELS IN INTELLECTUAL 3926 02:08:44,360 --> 02:08:46,400 FUNCTION AS WE THINK ABOUT THESE 3927 02:08:46,400 --> 02:08:49,640 DIFFERENT CHAPTERS. 3928 02:08:49,640 --> 02:08:50,480 >>THANK YOU. 3929 02:08:50,480 --> 02:08:51,400 STEVEN, DID YOU HAVE A COMMENT 3930 02:08:51,400 --> 02:08:52,600 THAT YOU WANTED TO SHARE ON 3931 02:08:52,600 --> 02:08:57,280 BEHALF OF SOMEONE? 3932 02:08:57,280 --> 02:08:59,040 >>YES, I HAD ONE COMMENT AND 3933 02:08:59,040 --> 02:09:04,840 ONE QUESTION. 3934 02:09:04,840 --> 02:09:06,360 JENNY MAI PHAN WANTED TO EXPRESS 3935 02:09:06,360 --> 02:09:08,560 INTEREST IN INCLUDING 3936 02:09:08,560 --> 02:09:10,040 PSYCHOPHARMACOLOGY IN THE MENTAL 3937 02:09:10,040 --> 02:09:15,000 HEALTH CROSS-CUTTING THEME. 3938 02:09:15,000 --> 02:09:15,920 DR. SUSAN RIVERA WANTED TO KNOW 3939 02:09:15,920 --> 02:09:17,120 EXACTLY WHAT THE CROSS-CUTTING 3940 02:09:17,120 --> 02:09:20,120 THEME WOULD BE. 3941 02:09:20,120 --> 02:09:22,960 >>SO WITH CROSS-CUTTING THEMES 3942 02:09:22,960 --> 02:09:23,800 LIKE WE'VE SAID ON THIS SLIDE 3943 02:09:23,800 --> 02:09:25,160 THAT I HAVE SHOWN RIGHT HERE, WE 3944 02:09:25,160 --> 02:09:27,040 DO HAVE SEX AND GENDER AND 3945 02:09:27,040 --> 02:09:28,440 PROMOTING EQUITY AND REDUCING 3946 02:09:28,440 --> 02:09:28,760 DISPARITIES. 3947 02:09:28,760 --> 02:09:30,080 PART OF THE GOAL OF THAT IS 3948 02:09:30,080 --> 02:09:32,360 POSSIBLY PULLING TOGETHER 3949 02:09:32,360 --> 02:09:33,280 INFORMATION THAT MIGHT BE 3950 02:09:33,280 --> 02:09:34,800 SCATTERED ACROSS THE CHAPTERS 3951 02:09:34,800 --> 02:09:37,000 INTO ONE PLACE, BUT IT ALSO -- 3952 02:09:37,000 --> 02:09:39,200 WE IN THE OFFICE ARE USING THOSE 3953 02:09:39,200 --> 02:09:40,640 AS GUIDES FOR US TO BE ABLE TO 3954 02:09:40,640 --> 02:09:42,400 TAG RESEARCH PROJECTS AND BE 3955 02:09:42,400 --> 02:09:45,240 ABLE TO PULL THEM INTO A 3956 02:09:45,240 --> 02:09:46,760 SPECIFIC ANALYSIS. 3957 02:09:46,760 --> 02:09:47,800 WITH PSYCHOPHARMACOLOGY, I DON'T 3958 02:09:47,800 --> 02:09:49,200 KNOW THAT THAT IS SOMETHING THAT 3959 02:09:49,200 --> 02:09:50,440 WOULD BE CROSS-CUTTING ACROSS 3960 02:09:50,440 --> 02:09:52,040 ALL THE CHAPTERS, SO WE DO 3961 02:09:52,040 --> 02:09:54,800 DISCUSS THAT IN THE PLAN. 3962 02:09:54,800 --> 02:09:57,080 I WOULD SUGGEST POTENTIALLY 3963 02:09:57,080 --> 02:09:58,200 LOOKING AT QUESTION 4 AND SEEING 3964 02:09:58,200 --> 02:10:03,120 IF WE'VE TREATED IT ADEQUATELY 3965 02:10:03,120 --> 02:10:04,080 THERE. 3966 02:10:04,080 --> 02:10:10,120 AND THEN LINDSEY, DO YOU HAVE A 3967 02:10:10,120 --> 02:10:10,400 QUESTION? 3968 02:10:10,400 --> 02:10:12,520 >>YES, I DO. 3969 02:10:12,520 --> 02:10:13,720 I WAS TRYING TO THINK, SINCE 3970 02:10:13,720 --> 02:10:15,080 WE'RE DISCUSSING MENTAL HEALTH 3971 02:10:15,080 --> 02:10:19,000 AND FIGURING OUT HOW TO PREVENT 3972 02:10:19,000 --> 02:10:20,000 PUTTING IN TOO MANY 3973 02:10:20,000 --> 02:10:21,080 CROSS-CUTTING TOPICS. 3974 02:10:21,080 --> 02:10:25,000 I'M TRYING TO THINK IF 3975 02:10:25,000 --> 02:10:27,160 PUTTING -- IF IT'S A 3976 02:10:27,160 --> 02:10:29,760 CROSS-CUTTING TOPIC OR PUTTING A 3977 02:10:29,760 --> 02:10:31,160 SUBSECTION SOMEWHERE ABOUT 3978 02:10:31,160 --> 02:10:35,120 HEALTH AND WELLNESS AND PUTTING 3979 02:10:35,120 --> 02:10:35,640 MENTAL HEALTH UNDER THAT 3980 02:10:35,640 --> 02:10:37,080 UMBRELLA OF HEALTH AND WELLNESS, 3981 02:10:37,080 --> 02:10:41,560 OR IF THAT MIGHT BE TOO BROAD. 3982 02:10:41,560 --> 02:10:43,080 BUT I WANTED TO JUST PUT THAT 3983 02:10:43,080 --> 02:10:43,520 THOUGHT OUT THERE. 3984 02:10:43,520 --> 02:10:44,240 >>THANK YOU. 3985 02:10:44,240 --> 02:10:45,520 HEALTH AND WELLNESS IS MENTIONED 3986 02:10:45,520 --> 02:10:47,120 THROUGHOUT THE PLAN. 3987 02:10:47,120 --> 02:10:48,280 AGAIN THAT'S WHERE WHERE IT 3988 02:10:48,280 --> 02:10:49,720 WOULD BE PRETTY HARD TO SEPARATE 3989 02:10:49,720 --> 02:10:51,240 THAT FROM PRETTY MUCH ANY OF THE 3990 02:10:51,240 --> 02:10:51,920 RESEARCH THAT'S FUNDED. 3991 02:10:51,920 --> 02:10:53,960 I MEAN, ALL OF IT IS PRETTY MUCH 3992 02:10:53,960 --> 02:10:55,080 SOMETHING RELATED TO HEALTH AND 3993 02:10:55,080 --> 02:10:56,040 WELLNESS OR UNDERSTANDING WHY 3994 02:10:56,040 --> 02:11:00,160 PEOPLE ARE NOT HEALTHY AND WELL. 3995 02:11:00,160 --> 02:11:01,440 BUT IT IS CERTAINLY MENTIONED, 3996 02:11:01,440 --> 02:11:02,640 SO JUST LOOK AT WHAT WE HAVE 3997 02:11:02,640 --> 02:11:05,400 WHEN YOU HAVE A CHANCE TO REVIEW 3998 02:11:05,400 --> 02:11:06,200 AND LET US KNOW IF THERE'S 3999 02:11:06,200 --> 02:11:08,720 SOMETHING DIFFERENT THAT YOU SEE 4000 02:11:08,720 --> 02:11:10,440 A PLACE THAT YOU THINK IT NEEDS 4001 02:11:10,440 --> 02:11:12,360 OTHER MENTIONS. 4002 02:11:12,360 --> 02:11:13,280 DENA, DO YOU HAVE A COMMENT? 4003 02:11:13,280 --> 02:11:16,640 >>I HAVE A COMMENT FOR HARI. 4004 02:11:16,640 --> 02:11:18,480 HE'S HAVING TROUBLE GETTING IN 4005 02:11:18,480 --> 02:11:19,040 TO LEAVE COMMENTS. 4006 02:11:19,040 --> 02:11:21,320 SO I'M JUST GOING TO READ THIS. 4007 02:11:21,320 --> 02:11:23,320 WE NEED BETTER DEVELOPMENT OF 4008 02:11:23,320 --> 02:11:25,840 MEDS TO HELP WITH MENTAL HEALTH 4009 02:11:25,840 --> 02:11:28,360 NEEDS, SIBs, AND OBSESSIVE 4010 02:11:28,360 --> 02:11:29,920 COMPULSIVE BEHAVIORS AND SO ON. 4011 02:11:29,920 --> 02:11:31,560 INSTEAD, ALL WE HAVE IS BIG 4012 02:11:31,560 --> 02:11:33,520 PHARMA RECYCLING AND REBRANDING 4013 02:11:33,520 --> 02:11:36,160 DRUGS MADE IN THE 1950s. 4014 02:11:36,160 --> 02:11:37,480 MINOR CHANGES IN CHEMICAL 4015 02:11:37,480 --> 02:11:40,120 STRUCTURE ALLOW FOR RE-PATENTING 4016 02:11:40,120 --> 02:11:42,000 AND MAINTAINING EXORBITANTLY 4017 02:11:42,000 --> 02:11:43,640 HIGH PRICES AND PROFITS. 4018 02:11:43,640 --> 02:11:47,280 I HEARD DR. ANTONIO HARDIN OF 4019 02:11:47,280 --> 02:11:48,480 STANFORD MENTION THAT THESE 4020 02:11:48,480 --> 02:11:49,480 DRUGS DON'T WORK THE WAY THEY 4021 02:11:49,480 --> 02:11:52,440 SAY THEY SHOULD IN AUTISTICS AS 4022 02:11:52,440 --> 02:11:53,400 IN THE GENERAL POPULATION. 4023 02:11:53,400 --> 02:11:55,160 SO WHY ARE WE STILL 4024 02:11:55,160 --> 02:11:56,520 OVERMEDICATED WITH THESE SAME 4025 02:11:56,520 --> 02:11:57,080 DRUGS? 4026 02:11:57,080 --> 02:11:58,840 HAVE WE THOUGHT ABOUT WHETHER 4027 02:11:58,840 --> 02:12:00,560 SIB COULD BE PSYCHOLOGICAL 4028 02:12:00,560 --> 02:12:03,640 STRESS AND INDICATIVE OF SUICIDE 4029 02:12:03,640 --> 02:12:03,920 IDEATION? 4030 02:12:03,920 --> 02:12:04,600 MAYBE YOU DON'T HAVE THE 4031 02:12:04,600 --> 02:12:06,640 PHYSICAL ABILITY TO CARRY OUT 4032 02:12:06,640 --> 02:12:12,000 SUICIDE, WHICH REQUIRES LOTS OF 4033 02:12:12,000 --> 02:12:12,640 EXECUTIVE FUNCTION AND PLANNING 4034 02:12:12,640 --> 02:12:13,640 SO YOU DO WHAT IS AVAILABLE TO 4035 02:12:13,640 --> 02:12:13,840 YOU. 4036 02:12:13,840 --> 02:12:14,960 >>THANK YOU. 4037 02:12:14,960 --> 02:12:16,120 AND SIB IS ON THE LIST OF ONE OF 4038 02:12:16,120 --> 02:12:19,880 THE TOPICS TO JUST RE-REVIEW FOR 4039 02:12:19,880 --> 02:12:21,000 OUR TEAM AS WE GO THROUGH THE 4040 02:12:21,000 --> 02:12:21,320 PLAN. 4041 02:12:21,320 --> 02:12:23,440 WE HAVE A LIST AND WE'RE TAKING 4042 02:12:23,440 --> 02:12:24,280 NOTES THROUGH THIS AND WE WILL 4043 02:12:24,280 --> 02:12:28,800 BE GOING BACK AND LOOKING 4044 02:12:28,800 --> 02:12:30,120 THROUGH THE CLAP TERSE TO TRY TO 4045 02:12:30,120 --> 02:12:31,560 MAKE SURE WE'VE DONE OUR BEST TO 4046 02:12:31,560 --> 02:12:32,680 INCORPORATE THINGS AND OF COURSE 4047 02:12:32,680 --> 02:12:34,080 WE'LL BE TAKING YOUR FEEDBACK 4048 02:12:34,080 --> 02:12:37,480 FOR ADDITIONAL COMMENTS. 4049 02:12:37,480 --> 02:12:39,120 SO IF IT'S OKAY WITH THE TIME WE 4050 02:12:39,120 --> 02:12:40,880 HAVE LEFT, I'D LIKE TO JUST 4051 02:12:40,880 --> 02:12:42,400 SHARE WITH YOU THE MISSION AND 4052 02:12:42,400 --> 02:12:44,600 VISION STATEMENT AND SOME OF 4053 02:12:44,600 --> 02:12:45,840 THESE OTHER THINGS THAT HAVE 4054 02:12:45,840 --> 02:12:46,520 BEEN REVISED. 4055 02:12:46,520 --> 02:12:48,160 SO THE MISSION AND VISION 4056 02:12:48,160 --> 02:12:50,120 STATEMENT THAT WE HAVE AFTER 4057 02:12:50,120 --> 02:12:52,320 REVISION IS THE PURPOSE OF THE 4058 02:12:52,320 --> 02:12:53,320 IACC STRATEGIC PLAN FOR AUTISM 4059 02:12:53,320 --> 02:12:56,080 RESEARCH SERVICES AND POLICY, IS 4060 02:12:56,080 --> 02:12:58,080 TO FOCUS, COORDINATE AND 4061 02:12:58,080 --> 02:12:59,160 ACCELERATE INNOVATIVE RESEARCH 4062 02:12:59,160 --> 02:13:00,560 AND FOSTER THE DEVELOPMENT OF 4063 02:13:00,560 --> 02:13:01,920 HIGH QUALITY SERVICES AND 4064 02:13:01,920 --> 02:13:03,480 SUPPORTS. 4065 02:13:03,480 --> 02:13:05,680 THE PLAN WILL EMPHASIZE THE 4066 02:13:05,680 --> 02:13:07,840 CRITICAL IMPORTANCE OF 4067 02:13:07,840 --> 02:13:08,520 PARTNERSHIPS AMONG GOVERNMENT 4068 02:13:08,520 --> 02:13:10,840 AND COMMUNITY PARTNERS TO 4069 02:13:10,840 --> 02:13:12,920 ADDRESS THE URGENT NEEDS -- OR 4070 02:13:12,920 --> 02:13:15,200 URGENT QUESTIONS AND NEEDS OF 4071 02:13:15,200 --> 02:13:17,000 ALL AUTISTIC PEOPLE ACROSS THE 4072 02:13:17,000 --> 02:13:17,640 SPECTRUM AND ACROSS THE 4073 02:13:17,640 --> 02:13:18,760 LIFESPAN. 4074 02:13:18,760 --> 02:13:19,840 ULTIMATELY, THE PLAN WILL 4075 02:13:19,840 --> 02:13:20,920 CATALYZE FEDERAL AND PRIVATE 4076 02:13:20,920 --> 02:13:22,400 ACTIVITIES THAT WILL IMPROVE 4077 02:13:22,400 --> 02:13:25,360 HEALTH, WELL-BEING, ACCEPTANCE, 4078 02:13:25,360 --> 02:13:33,880 INCLUSION, AND INCLUSION FOR ALL 4079 02:13:33,880 --> 02:13:34,880 PEOPLE ON THE AUTISM SPECTRUM 4080 02:13:34,880 --> 02:13:36,720 AND THEIR FAMILIES. 4081 02:13:36,720 --> 02:13:38,360 WE'VE ALSO DONE SOME REVISION TO 4082 02:13:38,360 --> 02:13:39,800 THE CORE VALUE, SO WE HAD THE 4083 02:13:39,800 --> 02:13:42,120 SAME SET OF CORE VALUES FROM 4084 02:13:42,120 --> 02:13:43,160 2009 AND AFTER LOOKING AT IT 4085 02:13:43,160 --> 02:13:45,840 WITH THE INPUT THAT YOU 4086 02:13:45,840 --> 02:13:47,520 PROVIDED, MADE SOME EDITS AND 4087 02:13:47,520 --> 02:13:48,600 UPDATES TO THIS TO FOCUS ON SOME 4088 02:13:48,600 --> 02:13:51,440 OF THE THINGS THAT YOU ALL HAVE 4089 02:13:51,440 --> 02:13:52,640 SHARED WITH US IN THE MEETINGS, 4090 02:13:52,640 --> 02:13:55,320 AND WE NOW HAVE ADDITIONAL CORE 4091 02:13:55,320 --> 02:13:57,480 VALUES, SO WE HAVE ONE ON 4092 02:13:57,480 --> 02:13:59,280 IMPACT, ONE ON COMMUNITY FOCUS, 4093 02:13:59,280 --> 02:14:02,480 ONE ON EQUITY AND INCLUSION, ONE 4094 02:14:02,480 --> 02:14:05,200 ON EXCELLENCE, ONE ON 4095 02:14:05,200 --> 02:14:06,280 RESPONSIVENESS, AND ONE ON THE 4096 02:14:06,280 --> 02:14:07,880 SPIRIT OF COLLABORATION THAT WE 4097 02:14:07,880 --> 02:14:11,120 HAVE UPDATED AND IN THE INTEREST 4098 02:14:11,120 --> 02:14:12,760 OF TIME, I'M NOT GOING TO READ 4099 02:14:12,760 --> 02:14:14,680 THEM ALL TO YOU, BUT THEY ARE 4100 02:14:14,680 --> 02:14:15,960 HERE ON THE SLIDES AND I DON'T 4101 02:14:15,960 --> 02:14:17,400 KNOW IF THEY'RE ON THE WEB RIGHT 4102 02:14:17,400 --> 02:14:21,080 NOW, BUT IF THEY ARE NOT, WE CAN 4103 02:14:21,080 --> 02:14:22,160 MAKE SURE WE PROVIDE THEM AND 4104 02:14:22,160 --> 02:14:23,680 THEY WILL BE A PART OF THE NEXT 4105 02:14:23,680 --> 02:14:24,200 DRAFT. 4106 02:14:24,200 --> 02:14:25,400 BUT WE REALLY APPRECIATE THE 4107 02:14:25,400 --> 02:14:28,000 INPUT THAT WE HAD AND HOPE THAT 4108 02:14:28,000 --> 02:14:30,640 THIS BETTER REFLECTS OUR CURRENT 4109 02:14:30,640 --> 02:14:31,280 THINKING. 4110 02:14:31,280 --> 02:14:33,040 AND IT WAS GOOD FOR US TO HAVE 4111 02:14:33,040 --> 02:14:38,680 AN UPDATE ON THESE. 4112 02:14:38,680 --> 02:14:40,160 I ALSO WANTED TO REPORT OUT TO 4113 02:14:40,160 --> 02:14:41,720 YOU ON THE BUDGET 4114 02:14:41,720 --> 02:14:42,080 RECOMMENDATIONS. 4115 02:14:42,080 --> 02:14:43,520 SO IN THE SURVEY THAT YOU 4116 02:14:43,520 --> 02:14:46,120 RECEIVED, YOU SHARED WITH US 4117 02:14:46,120 --> 02:14:47,960 WHAT YOUR PRIORITIES WERE FOR 4118 02:14:47,960 --> 02:14:49,080 THE BUDGET RECOMMENDATION WE HAD 4119 02:14:49,080 --> 02:14:49,760 YOU VOTE. 4120 02:14:49,760 --> 02:14:51,960 AND WE TOOK THE TOP THREE ISSUES 4121 02:14:51,960 --> 02:14:54,800 THAT YOU VOTED ON TO BE ITEMS TO 4122 02:14:54,800 --> 02:14:55,400 HIGHLIGHT. 4123 02:14:55,400 --> 02:14:56,400 IT DOESN'T MEAN THAT THE BUDGET 4124 02:14:56,400 --> 02:14:57,440 IS NOT GOING TO FOCUS ON ALL THE 4125 02:14:57,440 --> 02:14:58,680 OTHER THINGS THAT ARE IN THE 4126 02:14:58,680 --> 02:15:00,520 STRATEGIC PLAN. 4127 02:15:00,520 --> 02:15:03,440 BUT THE RESULT OF YOUR VOTE WAS 4128 02:15:03,440 --> 02:15:04,480 THAT THE COMMITTEE DECIDED THAT 4129 02:15:04,480 --> 02:15:08,760 THEY WOULD LIKE TO FOCUS ON 4130 02:15:08,760 --> 02:15:10,680 LIFESPAN ISSUES, EVIDENCE-BASED 4131 02:15:10,680 --> 02:15:13,600 INTERVENTIONS AND SERVICES, AND 4132 02:15:13,600 --> 02:15:19,160 RESEARCH ON DISPARITIES AND 4133 02:15:19,160 --> 02:15:21,320 DEVELOPMENT OF CULTURALLY 4134 02:15:21,320 --> 02:15:21,960 COMPETENT TOOLS AND SERVICES. 4135 02:15:21,960 --> 02:15:23,800 YOU ALSO DID DECIDE AT A 4136 02:15:23,800 --> 02:15:26,800 PREVIOUS MEETING TO EXTEND THIS 4137 02:15:26,800 --> 02:15:31,000 GOAL TO REACH FUNDING LEVEL OF 4138 02:15:31,000 --> 02:15:32,600 685 MILLION BY 2025. 4139 02:15:32,600 --> 02:15:34,120 THE PREVIOUS GOAL WAS TO REACH 4140 02:15:34,120 --> 02:15:35,800 THAT POINT THAT BY 2020, WE 4141 02:15:35,800 --> 02:15:37,000 DIDN'T MAKE IT QUITE THERE, SO 4142 02:15:37,000 --> 02:15:39,240 WE HAVE EXTENDED THAT TO TWEP 25 4143 02:15:39,240 --> 02:15:42,280 BASED ON YOUR INPUT ON THAT. 4144 02:15:42,280 --> 02:15:43,720 SO THAT IS THE BUDGET 4145 02:15:43,720 --> 02:15:45,680 RECOMMENDATION AND IT HAS A 4146 02:15:45,680 --> 02:15:46,640 NARRATIVE AND TEXT THAT YOU CAN 4147 02:15:46,640 --> 02:15:49,720 READ IN WHAT HAS BEEN PROVIDED. 4148 02:15:49,720 --> 02:15:51,520 WE ALSO INCLUDED A STATEMENT ON 4149 02:15:51,520 --> 02:15:52,800 DUPLICATION OF EFFORT, WHICH IS 4150 02:15:52,800 --> 02:15:54,000 SOMETHING CONGRESS REQUIRES US 4151 02:15:54,000 --> 02:15:57,760 TO DO TO ENSURE THAT THE FEDERAL 4152 02:15:57,760 --> 02:15:59,080 AGENCIES AND PEOPLE WORKING ON 4153 02:15:59,080 --> 02:16:00,960 AUTISM ARE NOT DUPLICATING 4154 02:16:00,960 --> 02:16:02,320 EFFORT AND PARTICULARLY FOR 4155 02:16:02,320 --> 02:16:03,720 FEDERAL AGENCIES NOT WASTING 4156 02:16:03,720 --> 02:16:05,360 TAXPAYER FUNDS ON THINGS THAT 4157 02:16:05,360 --> 02:16:07,640 ARE DUPLICATIVE. 4158 02:16:07,640 --> 02:16:10,320 THIS NARRATIVE THAT WE PROVIDED 4159 02:16:10,320 --> 02:16:13,280 EXPLAINS THAT THE GOAL OF THE 4160 02:16:13,280 --> 02:16:15,560 COMMITTEE IS TO RECOMMEND 4161 02:16:15,560 --> 02:16:17,280 RESEARCH THAT IS NOT DUPLICATIVE 4162 02:16:17,280 --> 02:16:20,960 AND ALSO THAT WE SUPPORT THE 4163 02:16:20,960 --> 02:16:22,280 IDEA OF VERIFYING RESEARCH 4164 02:16:22,280 --> 02:16:23,920 RESULTS HAVING MULTIPLE STUDIES 4165 02:16:23,920 --> 02:16:27,160 ON AN ISSUE FROM DIFFERENT 4166 02:16:27,160 --> 02:16:28,120 ANGLES AND THAT WE DON'T 4167 02:16:28,120 --> 02:16:32,040 CONSIDER THIS DUPLICATIVE. 4168 02:16:32,040 --> 02:16:34,560 AND THAT'S JUST A LITTLE BIT 4169 02:16:34,560 --> 02:16:35,400 FURTHER ON THAT. 4170 02:16:35,400 --> 02:16:36,800 SO THAT'S WHAT I WANTED TO SHARE 4171 02:16:36,800 --> 02:16:40,040 WITH YOU AND WE HAVE A COUPLE OF 4172 02:16:40,040 --> 02:16:41,280 ADDITIONAL MINUTES TO SHARE ANY 4173 02:16:41,280 --> 02:16:43,480 OTHER COMMENTS THAT WE WANT TO 4174 02:16:43,480 --> 02:16:45,800 SHARE HERE, AND I WILL GIVE YOU 4175 02:16:45,800 --> 02:16:47,880 SOME ACTION ITEMS. 4176 02:16:47,880 --> 02:16:57,520 SO DO WE HAVE ANY ADDITIONAL 4177 02:16:57,520 --> 02:16:58,120 COMMENTS? 4178 02:16:58,120 --> 02:16:59,160 WHY DON'T I JUST RUN THROUGH 4179 02:16:59,160 --> 02:17:00,480 WHAT THE NEXT ITEMS WILL BE. 4180 02:17:00,480 --> 02:17:01,680 SO WE'RE GOING TO BE PROVIDING 4181 02:17:01,680 --> 02:17:03,480 YOU WITH A SURVEY THAT YOU WILL 4182 02:17:03,480 --> 02:17:05,200 GET, AND YOU HAVE THESE DRAFT 4183 02:17:05,200 --> 02:17:06,440 CHAPTERS, WE WILL MAKE SURE 4184 02:17:06,440 --> 02:17:08,800 EVERYTHING IS THERE. 4185 02:17:08,800 --> 02:17:09,640 YOU WILL HAVE A CERTAIN AMOUNT 4186 02:17:09,640 --> 02:17:10,960 OF TIME TO PROVIDE US WITH YOUR 4187 02:17:10,960 --> 02:17:12,960 FEEDBACK AND WE ARE NOT 4188 02:17:12,960 --> 02:17:14,040 PROVIDING WORD DOCUMENTS FOR 4189 02:17:14,040 --> 02:17:15,480 LINE EDITS FROM 40 PEOPLE 4190 02:17:15,480 --> 02:17:17,120 BECAUSE THAT WOULD NOT BE 4191 02:17:17,120 --> 02:17:17,440 MANAGEABLE. 4192 02:17:17,440 --> 02:17:18,800 WE'RE JUST GOING TO GIVE YOU A 4193 02:17:18,800 --> 02:17:19,560 SURVEY DOCUMENT WHERE YOU CAN 4194 02:17:19,560 --> 02:17:22,080 JUST WRITE YOUR COMMENTS IN AND 4195 02:17:22,080 --> 02:17:23,480 THEY WILL BE BINNED FOR US AND 4196 02:17:23,480 --> 02:17:24,680 WE WILL INCORPORATE THOSE INTO 4197 02:17:24,680 --> 02:17:27,320 THE NEW DRAFT, AND BEFORE THE 4198 02:17:27,320 --> 02:17:28,680 NEXT MEETING, THERE WILL BE A 4199 02:17:28,680 --> 02:17:30,240 NEW DRAFT FOR YOU TO REVIEW AND 4200 02:17:30,240 --> 02:17:31,640 WE HOPE IT'S READY TO APPROVE IN 4201 02:17:31,640 --> 02:17:35,680 JANUARY. 4202 02:17:35,680 --> 02:17:37,200 SO THE NEXT MEETING IS GOING TO 4203 02:17:37,200 --> 02:17:39,840 BE ON JANUARY 18TH, AND WE HAVE 4204 02:17:39,840 --> 02:17:41,080 NOT YET DECIDED IF IT'S GOING TO 4205 02:17:41,080 --> 02:17:43,600 BE VIRTUAL OR HYBRID. 4206 02:17:43,600 --> 02:17:45,280 WE WILL KEEP OUR EYE ON WHAT IS 4207 02:17:45,280 --> 02:17:46,200 GOING ON IN OUR ENVIRONMENT AT 4208 02:17:46,200 --> 02:17:46,680 THE TIME. 4209 02:17:46,680 --> 02:17:48,600 IF IT IS A HYBRID MEETING, IF WE 4210 02:17:48,600 --> 02:17:52,240 STILL HAVE RESTRICTIONS ON 4211 02:17:52,240 --> 02:17:53,640 SPACE, IT MAY NOT BE OPEN FOR 4212 02:17:53,640 --> 02:17:54,600 THE PUBLIC TO I A TEND IN 4213 02:17:54,600 --> 02:17:56,240 PERSON, IT MAY ONLY BE OPEN FOR 4214 02:17:56,240 --> 02:17:57,280 MEMBERS TO ATTEND IN PERSON, BUT 4215 02:17:57,280 --> 02:17:58,920 WE WILL KEEP YOU UPDATED BASED 4216 02:17:58,920 --> 02:18:01,040 ON THE LATEST ON THAT, AND THE 4217 02:18:01,040 --> 02:18:02,240 WEBSITE WILL HAVE MEETING 4218 02:18:02,240 --> 02:18:03,000 UPDATES. 4219 02:18:03,000 --> 02:18:04,320 AND SO IF THERE ARE SOME OTHER 4220 02:18:04,320 --> 02:18:05,320 QUESTION, I SEE A COUPLE OF 4221 02:18:05,320 --> 02:18:06,480 HANDS RAISED, I JUST WANTED TO 4222 02:18:06,480 --> 02:18:07,760 MAKE SURE I GOT THROUGH THE REST 4223 02:18:07,760 --> 02:18:08,640 OF THESE SLIDES. 4224 02:18:08,640 --> 02:18:11,200 SO JALYNN, DO YOU HAVE A 4225 02:18:11,200 --> 02:18:14,240 COMMENT? 4226 02:18:14,240 --> 02:18:15,760 >>YES, I HAVE A QUESTION. 4227 02:18:15,760 --> 02:18:17,360 WITH THE BUDGET, ONE PARTICULAR 4228 02:18:17,360 --> 02:18:18,520 POINT A FEW YEARS AGO, THERE WAS 4229 02:18:18,520 --> 02:18:20,480 A PROPORTION THAT HAD BEEN 4230 02:18:20,480 --> 02:18:22,880 DEDICATED TOWARD ADULT AUTISM, 4231 02:18:22,880 --> 02:18:27,880 AND THEN I GUESS THE REST OF THE 4232 02:18:27,880 --> 02:18:29,400 BUCKET, POOR WAY OF STATING IT. 4233 02:18:29,400 --> 02:18:31,120 WITH THIS BUDGET, WHAT PORTION 4234 02:18:31,120 --> 02:18:33,360 OF THAT IS DIRECTED TOWARD 4235 02:18:33,360 --> 02:18:34,800 ADULTS, OR IS THAT EVEN BEING 4236 02:18:34,800 --> 02:18:36,240 SEPARATED OUT ANY LONGER? 4237 02:18:36,240 --> 02:18:39,200 >>SO THAT'S THE LIFESPAN ISSUES 4238 02:18:39,200 --> 02:18:41,400 PART OF IT, BUT -- SO TO CLARIFY 4239 02:18:41,400 --> 02:18:43,280 WHAT THE BUDGET RECOMMENDATION 4240 02:18:43,280 --> 02:18:44,560 IS, IT'S A RECOMMENDATION FROM 4241 02:18:44,560 --> 02:18:48,120 THE COMMITTEE ABOUT WHERE 4242 02:18:48,120 --> 02:18:49,120 AGENCIES MIGHT WANT TO FOCUS IF 4243 02:18:49,120 --> 02:18:50,640 THEY WANTED TO FOCUS ON THINGS 4244 02:18:50,640 --> 02:18:54,920 THAT ARE IMPORTANT TO THE 4245 02:18:54,920 --> 02:18:55,640 COMMITTEE. 4246 02:18:55,640 --> 02:18:56,840 ALTHOUGH THE ENTIRE STRATEGIC 4247 02:18:56,840 --> 02:18:58,040 PLAN AND ALL OF ITS 4248 02:18:58,040 --> 02:18:59,040 RECOMMENDATIONS ARE ADVISORY TO 4249 02:18:59,040 --> 02:19:00,480 THE SECRETARY OF HEALTH AND 4250 02:19:00,480 --> 02:19:02,360 HUMAN SERVICES AND TO FEDERAL 4251 02:19:02,360 --> 02:19:03,240 AGENCIES. 4252 02:19:03,240 --> 02:19:09,120 SO THAT IS COVERED HERE. 4253 02:19:09,120 --> 02:19:11,960 BUT THAT DOES NOT MEAN THERE IS 4254 02:19:11,960 --> 02:19:13,560 A SET BUDGET LIKE SOME FEDERAL 4255 02:19:13,560 --> 02:19:14,880 BUDGET THAT'S DIVIDED UP TO 4256 02:19:14,880 --> 02:19:15,600 PIECES. 4257 02:19:15,600 --> 02:19:17,640 EVERY AGENCY GETS ITS OWN BUDGET 4258 02:19:17,640 --> 02:19:18,680 AND MAKES ITS OWN FUNDING. 4259 02:19:18,680 --> 02:19:20,480 >>I THINK, SUSAN, THE QUESTION 4260 02:19:20,480 --> 02:19:25,640 JALYNN WAS FRYIN WAS TRYING TO S 4261 02:19:25,640 --> 02:19:27,160 THERE A RECOMMENDATION FOR A 4262 02:19:27,160 --> 02:19:31,920 CERTAIN SUBSET OF THE 658 -- 4263 02:19:31,920 --> 02:19:35,160 $685 MILLION BY 2025 THAT WE 4264 02:19:35,160 --> 02:19:38,920 RECOMMEND SPENDING ON RESEARCH 4265 02:19:38,920 --> 02:19:40,920 AND SERVICES -- I THINK THIS IS 4266 02:19:40,920 --> 02:19:43,720 RESEARCH, RESEARCH IN ADULTS 4267 02:19:43,720 --> 02:19:44,000 WITH AUTISM? 4268 02:19:44,000 --> 02:19:45,280 >>THE BUDGET RECOMMENDATION 4269 02:19:45,280 --> 02:19:47,880 PREVIOUSLY HAS NOT RECOMMENDED A 4270 02:19:47,880 --> 02:19:48,440 SPECIFIC DOLLAR AMOUNT. 4271 02:19:48,440 --> 02:19:49,640 I THINK THAT WOULD BE A LITTLE 4272 02:19:49,640 --> 02:19:52,160 BIT CHALLENGING, GIVEN HOW 4273 02:19:52,160 --> 02:19:53,160 APPROPRIATIONS ARE MADE TO 4274 02:19:53,160 --> 02:19:54,480 FEDERAL AGENCIES TO SPECIFY AND 4275 02:19:54,480 --> 02:19:58,600 THEN TRY TO ADD THAT UP, BUT WE 4276 02:19:58,600 --> 02:20:00,760 ARE TRACKING ON THE $685 MILLION 4277 02:20:00,760 --> 02:20:00,960 TOTAL. 4278 02:20:00,960 --> 02:20:02,200 THAT INCLUDES NON-FEDERAL 4279 02:20:02,200 --> 02:20:03,040 ORGANIZATIONS AS WELL. 4280 02:20:03,040 --> 02:20:06,040 >>A FEW YEARS AGO, IT WAS LIKE 4281 02:20:06,040 --> 02:20:10,960 2% OF THE AUTISM FUNDING 4282 02:20:10,960 --> 02:20:12,600 HAPPENED TO GO TO ADULTS WITH 4283 02:20:12,600 --> 02:20:14,320 AUTISM, THEN IT INCREASED TO 4% 4284 02:20:14,320 --> 02:20:15,520 AND THAT'S KIND OF WHAT I'M 4285 02:20:15,520 --> 02:20:16,520 ASKING ABOUT. 4286 02:20:16,520 --> 02:20:18,280 WHAT PROPORTION OF THAT, OR 4287 02:20:18,280 --> 02:20:20,240 MAYBE THAT ISN'T EVEN THE WAY 4288 02:20:20,240 --> 02:20:21,560 THAT THINGS ARE LOOKED AT NOW, 4289 02:20:21,560 --> 02:20:23,120 BUT WE GAVE TESTIMONY FOR THAT A 4290 02:20:23,120 --> 02:20:24,440 FEW YEARS AGO. 4291 02:20:24,440 --> 02:20:26,400 >>SO JALYNN, THAT'S A DATA 4292 02:20:26,400 --> 02:20:27,600 QUESTION AS OPPOSED TO A 4293 02:20:27,600 --> 02:20:30,200 RECOMMENDATION, RIGHT? 4294 02:20:30,200 --> 02:20:33,680 SO YES, WE CAN TRACK -- IT CAN 4295 02:20:33,680 --> 02:20:35,760 BE CHALLENGING BUT IACC STAFF DO 4296 02:20:35,760 --> 02:20:39,440 TRACK SOME OF THE DETAILS ABOUT 4297 02:20:39,440 --> 02:20:41,280 HOW THIS MONEY IS SPENT IN 4298 02:20:41,280 --> 02:20:42,040 DIFFERENT AREAS. 4299 02:20:42,040 --> 02:20:43,320 BUT WHAT WE'RE TALKING ABOUT 4300 02:20:43,320 --> 02:20:48,600 HERE IS A RECOMMENDATION FOR 4301 02:20:48,600 --> 02:20:50,080 FUTURE EXPENDITURES ON AUTISM 4302 02:20:50,080 --> 02:20:52,040 RESEARCH, WHICH IS WHAT CONGRESS 4303 02:20:52,040 --> 02:20:52,920 HAS ASKED US FOR. 4304 02:20:52,920 --> 02:20:56,120 WE HAVE NOT IN THE PAST TRIED TO 4305 02:20:56,120 --> 02:20:57,560 SPECIFY HOW MUCH GOES FOR WHICH 4306 02:20:57,560 --> 02:20:59,560 KINDS OF TOPICS. 4307 02:20:59,560 --> 02:21:01,040 >>SO WE WILL SHARE WITH YOU 4308 02:21:01,040 --> 02:21:02,680 WHEN WE DO THE PORTFOLIO 4309 02:21:02,680 --> 02:21:05,120 ANALYSIS UPDATE IN JANUARY WHAT 4310 02:21:05,120 --> 02:21:07,440 THE UPDATE IS ON LIFESPAN ISSUES 4311 02:21:07,440 --> 02:21:11,240 AND I CAN SAY AS A PREVIEW WE'VE 4312 02:21:11,240 --> 02:21:12,520 NOTED AN INCREASE IN OUR 4313 02:21:12,520 --> 02:21:13,480 ANALYSIS, BUT WE WILL SHARE THAT 4314 02:21:13,480 --> 02:21:17,480 WITH YOU IN DETAIL IN JANUARY. 4315 02:21:17,480 --> 02:21:18,800 ANY OTHER QUESTIONS BEFORE WE 4316 02:21:18,800 --> 02:21:23,400 BREAK FOR LUNCH? 4317 02:21:23,400 --> 02:21:25,720 >>I JUST WANT TO PUT A PITCH IN 4318 02:21:25,720 --> 02:21:27,960 FOR AN IN-PERSON MEETING. 4319 02:21:27,960 --> 02:21:29,560 I THINK OUR BODY IS REALLY 4320 02:21:29,560 --> 02:21:31,360 STRUGGLING TO COALESCE THROUGH 4321 02:21:31,360 --> 02:21:32,480 THE MEETING THROUGH ZOOM. 4322 02:21:32,480 --> 02:21:33,680 I THINK WE'VE DONE THE VERY BEST 4323 02:21:33,680 --> 02:21:37,320 WE COULD WITH OUR CIRCUMSTANCES, 4324 02:21:37,320 --> 02:21:39,400 BUT I JUST -- I JUST WANT TO PUT 4325 02:21:39,400 --> 02:21:40,240 A PITCH IN FOR THAT. 4326 02:21:40,240 --> 02:21:43,120 I THINK WE REALLY NEED THAT OFF 4327 02:21:43,120 --> 02:21:44,760 THE RECORD BONDING TIME TO BRING 4328 02:21:44,760 --> 02:21:47,400 THE GROUP TOGETHER. 4329 02:21:47,400 --> 02:21:48,960 >>THANK YOU, DENA. 4330 02:21:48,960 --> 02:21:50,840 WE ARE IN FULL PLANNING MODE TO 4331 02:21:50,840 --> 02:21:52,840 BE ABLE TO HAVE AN IN-PERSON 4332 02:21:52,840 --> 02:21:54,800 COMPONENT FOR THE MEETING, AND 4333 02:21:54,800 --> 02:21:56,120 IT'S CERTAINLY MY INTENTION TO 4334 02:21:56,120 --> 02:21:59,200 HOLD THE MEETING IN PERSON, BUT 4335 02:21:59,200 --> 02:22:02,840 NO ONE CAN KNOW WHAT WILL BE 4336 02:22:02,840 --> 02:22:03,760 HAPPENING WITH REGARD TO THE 4337 02:22:03,760 --> 02:22:04,000 PANDEMIC. 4338 02:22:04,000 --> 02:22:05,080 >>UNDERSTANDABLE, YEAH. 4339 02:22:05,080 --> 02:22:05,360 THANK YOU. 4340 02:22:05,360 --> 02:22:07,800 >>AND FOR THOSE OF YOU WHO 4341 02:22:07,800 --> 02:22:09,360 MIGHT FEEL OTHERWISE FROM DENA 4342 02:22:09,360 --> 02:22:10,320 AND BE CONCERNED ABOUT THE 4343 02:22:10,320 --> 02:22:11,600 PROSPECTS OF TRAVELING, ET 4344 02:22:11,600 --> 02:22:15,200 CETERA, WE WILL HAVE A HYBRID 4345 02:22:15,200 --> 02:22:16,920 OPTION AS WE'VE HAD IN THE PAST. 4346 02:22:16,920 --> 02:22:18,760 IT WILL BE MUCH BETTER THAN IT 4347 02:22:18,760 --> 02:22:19,520 USED TO BE BECAUSE OF OUR 4348 02:22:19,520 --> 02:22:21,480 EXPERIENCE HERE. 4349 02:22:21,480 --> 02:22:23,120 BUT I APPRECIATE THE COMMENT, 4350 02:22:23,120 --> 02:22:24,120 DENA. 4351 02:22:24,120 --> 02:22:27,320 AND ANY OTHER OPINIONS ARE 4352 02:22:27,320 --> 02:22:28,680 WELCOME TO EXPRESS TO MYSELF OR 4353 02:22:28,680 --> 02:22:29,000 SUSAN. 4354 02:22:29,000 --> 02:22:30,520 SO WITH THAT, THANK YOU VERY, 4355 02:22:30,520 --> 02:22:33,400 VERY MUCH FOR YOUR HARD WORK, 4356 02:22:33,400 --> 02:22:35,960 AND ATTENTION TO THESE BUSINESS 4357 02:22:35,960 --> 02:22:36,680 MATTERS AND THE REST. 4358 02:22:36,680 --> 02:22:39,760 WE WILL BE RETURNING SHARPLY AT 4359 02:22:39,760 --> 02:22:39,960 1:30. 4360 02:22:39,960 --> 02:22:41,120 WE'RE A FEW MINUTES LATE GOING 4361 02:22:41,120 --> 02:22:42,360 INTO OUR BREAK, BUT WE'RE GOING 4362 02:22:42,360 --> 02:22:45,600 TO START UP THE AFTERNOON ON 4363 02:22:45,600 --> 02:22:47,280 TIME, AND AS YOU'LL KNOW FROM 4364 02:22:47,280 --> 02:22:49,040 YOUR AGENDA, THE FIRST ITEM ON 4365 02:22:49,040 --> 02:22:52,120 THE AGENDA BACK IS THE PUBLIC 4366 02:22:52,120 --> 02:22:53,000 COMMENT SESSION. 4367 02:22:53,000 --> 02:22:55,920 WE'LL SEE YOU AT 1:30. 4368 02:22:55,920 --> 02:22:56,520 >>THANK YOU. 4369 02:22:56,520 --> 02:22:59,200 >>AND AGAIN, SORRY, IF YOU CAN, 4370 02:22:59,200 --> 02:23:00,680 PLEASE LEAVE THE ZOOM OPEN. 4371 02:23:00,680 --> 02:23:02,200 IT'S JUST EASIER THAN HAVING TO 4372 02:23:02,200 --> 02:23:03,680 WORRY ABOUT WHETHER OR NOT 4373 02:23:03,680 --> 02:23:05,200 YOU'RE GOING TO HAVE TECHNICAL 4374 02:23:05,200 --> 02:23:06,160 ISSUES COMING BACK IN, BUT STOP 4375 02:23:06,160 --> 02:23:07,640 YOUR VIDEOS AND MUTE YOUR 4376 02:23:07,640 --> 02:23:10,760 MICROPHONES. 4377 02:23:10,760 --> 02:23:15,520 >>SEE YOU AT 1:30. 4378 02:23:15,520 --> 02:23:16,960 >>WELCOME BACK, EVERYONE. 4379 02:23:16,960 --> 02:23:17,760 THANK YOU VERY MUCH. 4380 02:23:17,760 --> 02:23:22,760 HOPE YOU HAD A GOOD, USEFUL 4381 02:23:22,760 --> 02:23:26,760 BREAK AND ARE READY FOR THE BUSY 4382 02:23:26,760 --> 02:23:28,200 AFTERNOON WE HAVE PLANNED FOR US 4383 02:23:28,200 --> 02:23:29,360 ALL. 4384 02:23:29,360 --> 02:23:31,920 THE NEXT SEGMENT OF OUR MEETING 4385 02:23:31,920 --> 02:23:33,800 IS THE PUBLIC COMMENT SESSION. 4386 02:23:33,800 --> 02:23:35,320 AND TO LEAD THAT SESSION, I'M 4387 02:23:35,320 --> 02:23:38,080 GOING TO TURN IT BACK OVER TO 4388 02:23:38,080 --> 02:23:38,400 DR. DANIELS. 4389 02:23:38,400 --> 02:23:43,080 SUSAN. 4390 02:23:43,080 --> 02:23:43,800 >>THANK YOU. 4391 02:23:43,800 --> 02:23:45,200 SO WE ARE GOING TO BE TALKING 4392 02:23:45,200 --> 02:23:46,200 ABOUT PUBLIC COMMENTS AND 4393 02:23:46,200 --> 02:23:49,560 HEARING PUBLIC COMMENTS IN THIS 4394 02:23:49,560 --> 02:23:50,360 NEXT SESSION. 4395 02:23:50,360 --> 02:23:51,560 SO FIRST WE'LL BE HEARING FROM 4396 02:23:51,560 --> 02:23:52,760 OUR ORAL PUBLIC COMMENTERS. 4397 02:23:52,760 --> 02:23:54,040 I'D LIKE TO REMIND EVERYONE ON 4398 02:23:54,040 --> 02:23:56,400 THE COMMITTEE THAT WE ARE HERE 4399 02:23:56,400 --> 02:23:57,280 TO LISTEN TO PEOPLE THAT ARE 4400 02:23:57,280 --> 02:23:58,760 GOING TO BE SHARING THINGS FROM 4401 02:23:58,760 --> 02:23:59,880 DIFFERENT PERSPECTIVES AND THAT 4402 02:23:59,880 --> 02:24:01,680 WE WANT TO JUST BE THOUGHTFUL IN 4403 02:24:01,680 --> 02:24:02,680 OUR LISTENING AND CONSIDERATION 4404 02:24:02,680 --> 02:24:04,600 OF POINTS THAT ARE BEING MADE BY 4405 02:24:04,600 --> 02:24:05,680 OUR PUBLIC COMMENTERS. 4406 02:24:05,680 --> 02:24:07,680 AND WE APPRECIATE ALL THE PUBLIC 4407 02:24:07,680 --> 02:24:08,680 COMMENTERS ALSO HAVING THE 4408 02:24:08,680 --> 02:24:10,680 COURAGE TO COME AND SHARE YOUR 4409 02:24:10,680 --> 02:24:12,880 POINTS OF VIEW WITH THIS 4410 02:24:12,880 --> 02:24:13,120 COMMITTEE. 4411 02:24:13,120 --> 02:24:15,200 SO WE HAVE SHANNON DES ROCHES 4412 02:24:15,200 --> 02:24:16,720 ROSA, WHO WILL BE OUR FIRST 4413 02:24:16,720 --> 02:24:18,080 PRESENTER, AND THEN THAT WILL 4414 02:24:18,080 --> 02:24:21,120 BE -- SHE WILL BE FOLLOWED BY 4415 02:24:21,120 --> 02:24:24,920 JUDITH URSITTI, AMY LUTZ, AMY 4416 02:24:24,920 --> 02:24:26,920 MONTIMURO, RIEKO SHEPHERD, AND 4417 02:24:26,920 --> 02:24:28,080 ELLIOT GAVIN KEENAN IN THAT 4418 02:24:28,080 --> 02:24:28,800 ORDER. 4419 02:24:28,800 --> 02:24:31,240 SO I WILL HAND IT OVER TO 4420 02:24:31,240 --> 02:24:32,200 SHANNON DES ROCHES ROSA TO START 4421 02:24:32,200 --> 02:24:34,040 US OFF WITH THE PUBLIC COMMENT. 4422 02:24:34,040 --> 02:24:35,520 AND REMEMBER, EVERYONE, WE'RE 4423 02:24:35,520 --> 02:24:37,720 STICKING TO ABOUT 3 MINUTES PER 4424 02:24:37,720 --> 02:24:39,240 COMMENT, AND WE WON'T BE 4425 02:24:39,240 --> 02:24:40,440 RESPONDING TO THEM UNTIL AFTER 4426 02:24:40,440 --> 02:24:42,640 WE'VE GONE THROUGH ALL OF THE 4427 02:24:42,640 --> 02:24:43,560 ORAL AND WRITTEN COMMENTS. 4428 02:24:43,560 --> 02:24:45,880 SO TAKE IT AWAY, SHANNON. 4429 02:24:45,880 --> 02:24:47,680 >>THANK YOU SO MUCH, 4430 02:24:47,680 --> 02:24:49,000 DR. DANIELS. 4431 02:24:49,000 --> 02:24:50,680 I'M SPEAKING TO YOU AS THE 4432 02:24:50,680 --> 02:24:53,600 PARENT OF AN AUTISTIC ADULT WHO 4433 02:24:53,600 --> 02:24:55,320 REQUIRES FULL TIME SUPPORT AND 4434 02:24:55,320 --> 02:24:56,840 SUPERVISION AND ALSO A SENIOR 4435 02:24:56,840 --> 02:24:58,480 EDITOR OF THINKING PERSON'S 4436 02:24:58,480 --> 02:25:00,960 GUIDE TO AUTISM, AN AUTISM 4437 02:25:00,960 --> 02:25:01,960 RESEARCH AND ADVOCACY COMMUNITY 4438 02:25:01,960 --> 02:25:03,680 WHERE I CONSTANTLY HEAR FROM 4439 02:25:03,680 --> 02:25:06,000 PARENTS, AUTISTIC PEOPLE, 4440 02:25:06,000 --> 02:25:06,800 PROFESSIONALS AND RESEARCHERS 4441 02:25:06,800 --> 02:25:08,360 ABOUT THEIR PRIORITIES FOR 4442 02:25:08,360 --> 02:25:10,200 AUTISTIC PEOPLE TO LIVE SAFE, 4443 02:25:10,200 --> 02:25:13,120 HEALTHY, FULFILLED LIVES. 4444 02:25:13,120 --> 02:25:15,280 COMMUNITY PRIORITIES INCLUDE: 4445 02:25:15,280 --> 02:25:17,160 RESEARCH ON HOW AUTISTIC PEOPLE 4446 02:25:17,160 --> 02:25:18,480 MAY PROCESS MEDICATIONS 4447 02:25:18,480 --> 02:25:20,840 DIFFERENTLY, THE MEDICAL 4448 02:25:20,840 --> 02:25:22,120 COMMUNITY SEEMS LARGELY UNAWARE 4449 02:25:22,120 --> 02:25:24,120 THAT AUTISTIC PEOPLE OFTEN HAVE 4450 02:25:24,120 --> 02:25:25,680 PARADOXICAL OR ATYPICAL 4451 02:25:25,680 --> 02:25:29,320 REACTIONS TO COMMONLY PRESCRIBED 4452 02:25:29,320 --> 02:25:31,160 MEDICATIONS SUCH AS NOT REACTING 4453 02:25:31,160 --> 02:25:33,320 TO OR BEING OVERSTIMULATED BY 4454 02:25:33,320 --> 02:25:34,960 SEDATING DRUGS. 4455 02:25:34,960 --> 02:25:35,720 IN WORST-CASE SCENARIOS, THIS 4456 02:25:35,720 --> 02:25:37,680 LACK OF KNOWLEDGE HAS BEEN 4457 02:25:37,680 --> 02:25:38,000 FATAL. 4458 02:25:38,000 --> 02:25:40,040 WE ALSO NEED RESEARCH ON WHY 4459 02:25:40,040 --> 02:25:42,040 SEDATION FOR MEDICAL CARE IS AN 4460 02:25:42,040 --> 02:25:42,560 ACCESS NEED. 4461 02:25:42,560 --> 02:25:44,960 BOTH SPEAKING AND UNSPEAKING 4462 02:25:44,960 --> 02:25:46,560 AUTISTICS OFTEN REQUIRE PARTIAL 4463 02:25:46,560 --> 02:25:49,080 OR FULL SEDATION TO BE ABLE TO 4464 02:25:49,080 --> 02:25:50,400 TOLERATE MEDICAL PROCEDURES SUCH 4465 02:25:50,400 --> 02:25:52,680 AS DENTAL EXAMS AND MRIs. 4466 02:25:52,680 --> 02:25:54,360 YET THE SEDATION IS RARELY 4467 02:25:54,360 --> 02:25:56,480 COVERED BY INSURANCE. 4468 02:25:56,480 --> 02:25:58,240 SUCH RESEARCH COULD IMPROVE 4469 02:25:58,240 --> 02:26:01,040 HEALTHCARE ACCESS AS WELL AS 4470 02:26:01,040 --> 02:26:01,360 OUTCOMES. 4471 02:26:01,360 --> 02:26:03,000 WE ALSO NEED RESEARCH ON 4472 02:26:03,000 --> 02:26:05,080 COMPETING SENSORY ACCESS NEEDS. 4473 02:26:05,080 --> 02:26:06,160 AUTISTIC SENSORY SYSTEMS DON'T 4474 02:26:06,160 --> 02:26:08,000 ONLY DIFFER FROM NON-AUTISTIC 4475 02:26:08,000 --> 02:26:09,040 PEOPLE, THEY OFTEN DIFFER FROM 4476 02:26:09,040 --> 02:26:10,200 EACH OTHER. 4477 02:26:10,200 --> 02:26:12,920 WE NEED RESEARCH ILLUSTRATING 4478 02:26:12,920 --> 02:26:14,880 WHY IT IS INAPPROPRIATE TO PUT 4479 02:26:14,880 --> 02:26:16,000 AUTISTIC PEOPLE TOGETHER IN 4480 02:26:16,000 --> 02:26:17,360 CLASSROOMS OR OTHER SETTINGS 4481 02:26:17,360 --> 02:26:18,760 WITHOUT FULLY EVALUATING AND 4482 02:26:18,760 --> 02:26:19,840 ACCOMMODATING THEIR 4483 02:26:19,840 --> 02:26:23,560 INDIVIDUALIZED SENSORY PROFILES. 4484 02:26:23,560 --> 02:26:29,680 WE ALSO SORLIE N SORELY NEED REN 4485 02:26:29,680 --> 02:26:32,600 IMPROVING ACCESS TO DIAGNOSIS, 4486 02:26:32,600 --> 02:26:33,880 WHILE I KNOW THIS IS IMPROVING, 4487 02:26:33,880 --> 02:26:36,400 TOO MANY AUTISTIC PEOPLE ARE 4488 02:26:36,400 --> 02:26:38,360 BEING MISDIAGNOSED, CATEGORIZED 4489 02:26:38,360 --> 02:26:40,160 AS HAVING BEHAVIORAL DISORDERS, 4490 02:26:40,160 --> 02:26:41,480 RESORTING TO SELF-DIAGNOSIS OR 4491 02:26:41,480 --> 02:26:43,040 BEING OVERLOOKED ALL TOGETHER. 4492 02:26:43,040 --> 02:26:44,520 THEY ARE SUFFERING AS A RESULT, 4493 02:26:44,520 --> 02:26:46,480 LEADING TO AVOIDABLE ANXIETY, 4494 02:26:46,480 --> 02:26:48,600 DEPRESSION, ISOLATION, POVERTY, 4495 02:26:48,600 --> 02:26:50,520 AND SUICIDALITY. 4496 02:26:50,520 --> 02:26:52,920 FINALLY, WE NEED RESEARCH ON 4497 02:26:52,920 --> 02:26:54,080 TRANSITIONING OUT OF THE SCHOOL 4498 02:26:54,080 --> 02:26:56,360 SYSTEM AND INTO ADULTHOOD, 4499 02:26:56,360 --> 02:26:57,160 ESPECIALLY FOR OUR AUTISTIC 4500 02:26:57,160 --> 02:26:58,440 PEOPLE WITH THE HIGHEST SUPPORT 4501 02:26:58,440 --> 02:26:58,960 NEEDS. 4502 02:26:58,960 --> 02:27:00,640 THE CLIFF IS A REAL THING FOR 4503 02:27:00,640 --> 02:27:02,240 STUDENTS LIKE MY SON, WHO IS 4504 02:27:02,240 --> 02:27:03,960 CURRENTLY FACING A COMPLETE LACK 4505 02:27:03,960 --> 02:27:06,040 OF APPROPRIATE LOCAL ADULT 4506 02:27:06,040 --> 02:27:06,680 PROGRAMS. 4507 02:27:06,680 --> 02:27:08,480 AT THE SAME TIME, THERE IS ALSO 4508 02:27:08,480 --> 02:27:09,760 A DIRECT SUPPORT WORKER 4509 02:27:09,760 --> 02:27:10,600 SHORTAGE, SO MY SON DOES NOT 4510 02:27:10,600 --> 02:27:13,760 HAVE THE STAFFING HE NEEDS AND 4511 02:27:13,760 --> 02:27:15,080 DESERVES AND HAS BEEN ALLOCATED. 4512 02:27:15,080 --> 02:27:17,040 IF FAMILIES LIKE MINE WHICH HAVE 4513 02:27:17,040 --> 02:27:17,920 THE LANGUAGE, CLASS AND 4514 02:27:17,920 --> 02:27:19,000 COGNITIVE ADVANTAGES THAT MAKE 4515 02:27:19,000 --> 02:27:24,360 IT EASIER TO NAVIGATE 4516 02:27:24,360 --> 02:27:25,640 IMPENETRABLE PUBLIC DISABILITY 4517 02:27:25,640 --> 02:27:27,360 SUPPORT SYSTEMS STILL CAN'T FIND 4518 02:27:27,360 --> 02:27:29,000 ANY SUPPORT, THEN FAMILIES WHO 4519 02:27:29,000 --> 02:27:30,280 DON'T HAVE OUR ADVANTAGES ARE 4520 02:27:30,280 --> 02:27:31,720 CERTAINLY WORSE OFF AND NEED OUR 4521 02:27:31,720 --> 02:27:32,480 SUPPORT. 4522 02:27:32,480 --> 02:27:34,240 A FINAL NOTE, I AM GLADDENED 4523 02:27:34,240 --> 02:27:36,920 ABOUT THE IACC'S CURRENT 4524 02:27:36,920 --> 02:27:40,880 MEMBERSHIP INCLUSIVE OF THOSE 4525 02:27:40,880 --> 02:27:42,240 WHO HAVE INTELLECTUAL 4526 02:27:42,240 --> 02:27:43,000 DISABILITY, WHO ARE PARENTS, WHO 4527 02:27:43,000 --> 02:27:44,560 HAVE FAMILY MEMBERS WITH 4528 02:27:44,560 --> 02:27:45,840 INTENSIVE SUPPORT NEEDS SIMILAR 4529 02:27:45,840 --> 02:27:47,160 TO MY OWN SON, AND/OR WHO ARE 4530 02:27:47,160 --> 02:27:47,920 PEOPLE OF COLOR. 4531 02:27:47,920 --> 02:27:49,880 IT IS HARD TO HAVE FAITH IN AN 4532 02:27:49,880 --> 02:27:51,360 ADVISORY BODY THAT DOES NOT 4533 02:27:51,360 --> 02:27:52,680 RESEMBLE THE POPULATION FOR WHOM 4534 02:27:52,680 --> 02:27:53,880 IT IS RESPONSIBLE. 4535 02:27:53,880 --> 02:27:57,040 ALSO, AS SOMEONE WHOSE AUTISTIC 4536 02:27:57,040 --> 02:27:58,320 SON HAS LIMIT LANGUAGE IT IS 4537 02:27:58,320 --> 02:27:59,720 IMPORTANT FOR ME TO KNOW THAT 4538 02:27:59,720 --> 02:28:01,120 AUTISTIC IACC MEMBERS, PEOPLE 4539 02:28:01,120 --> 02:28:02,320 WHO UNDERSTAND MY SON'S LIFE AND 4540 02:28:02,320 --> 02:28:04,280 EXPERIENCE IN WAYS THAT I AS A 4541 02:28:04,280 --> 02:28:05,680 NON-AUTISTIC PERSON NEVER CAN, 4542 02:28:05,680 --> 02:28:06,760 ARE LOOKING OUT FOR HIS 4543 02:28:06,760 --> 02:28:07,640 INTERESTS AS A HUMAN BEING. 4544 02:28:07,640 --> 02:28:10,360 THANK YOU. 4545 02:28:10,360 --> 02:28:12,960 >>THANK YOU. 4546 02:28:12,960 --> 02:28:16,040 SO WE WILL MOVE ON TO THE NEXT 4547 02:28:16,040 --> 02:28:16,440 COMMENT. 4548 02:28:16,440 --> 02:28:17,240 I APPRECIATE YOUR COMMENTS. 4549 02:28:17,240 --> 02:28:18,200 THANK YOU FOR SHARING THAT WITH 4550 02:28:18,200 --> 02:28:19,360 US. 4551 02:28:19,360 --> 02:28:23,560 NEXT WE HAVE JUDITH URSITTI. 4552 02:28:23,560 --> 02:28:24,520 >>HELLO THERE. 4553 02:28:24,520 --> 02:28:26,040 I HAVE A BIT OF A COLD BUT I 4554 02:28:26,040 --> 02:28:27,880 PROMISE I'M COVID-NEGATIVE. 4555 02:28:27,880 --> 02:28:29,200 AND IF I START COUGHING, JUST 4556 02:28:29,200 --> 02:28:30,960 PLEASE JUMP IN AND TAKE OVER. 4557 02:28:30,960 --> 02:28:33,000 MY NAME IS JUDITH UR SI TI. 4558 02:28:33,000 --> 02:28:34,640 I'M VICE PRESIDENT OF GOVERNMENT 4559 02:28:34,640 --> 02:28:37,120 AFFAIRS FOR THE COUNCIL OF 4560 02:28:37,120 --> 02:28:37,920 AUTISM SERVICE PROVIDERS. 4561 02:28:37,920 --> 02:28:40,800 IF YOU HAVEN'T HEARD OF CASP, I 4562 02:28:40,800 --> 02:28:41,520 HOPE YOU WILL SOON. 4563 02:28:41,520 --> 02:28:44,920 WE ARE A NON-PROFIT TRADE 4564 02:28:44,920 --> 02:28:47,280 ASSOCIATION MADE UP OF HUNDREDS 4565 02:28:47,280 --> 02:28:49,240 OF AUTISM SERVICE PROVIDERS OF 4566 02:28:49,240 --> 02:28:51,120 ALL SORTS: SCHOOLS, 4567 02:28:51,120 --> 02:28:54,040 MULTI-SPECIALTY CLINICS, ADA 4568 02:28:54,040 --> 02:28:55,120 CLINICS, ADULT SERVICES 4569 02:28:55,120 --> 02:28:56,760 PROVIDERS ALL MAKE UP OUR 4570 02:28:56,760 --> 02:28:58,160 MEMBERSHIP, AND THEY PROVIDE 4571 02:28:58,160 --> 02:29:00,120 AUTISM SERVICES ACROSS THE 4572 02:29:00,120 --> 02:29:01,640 LIFESPAN TO AUTISTIC PEOPLE ALL 4573 02:29:01,640 --> 02:29:04,040 OVER THE UNITED STATES. 4574 02:29:04,040 --> 02:29:05,000 I'M SPEAKING TO YOU TODAY 4575 02:29:05,000 --> 02:29:06,840 BECAUSE I WANT TO MAKE SURE AS 4576 02:29:06,840 --> 02:29:09,800 YOU'RE WORKING ON THE EXTRA TEE 4577 02:29:09,800 --> 02:29:13,680 STRATEGICPLAN FOR THE IACC THATP 4578 02:29:13,680 --> 02:29:14,560 SOME THINGS IN MIND. 4579 02:29:14,560 --> 02:29:16,720 ONE IS PROTECTING THE QUALITY OF 4580 02:29:16,720 --> 02:29:17,880 THE SERVICES THAT ARE PROVIDED 4581 02:29:17,880 --> 02:29:20,560 IN THE STRATEGIC PLAN, AND DOING 4582 02:29:20,560 --> 02:29:21,560 SO THROUGH A COUPLE OF THINGS. 4583 02:29:21,560 --> 02:29:23,160 ONE IS PRIORITIZATION OF 4584 02:29:23,160 --> 02:29:25,480 GENERALLY ACCEPTED STANDARDS OF 4585 02:29:25,480 --> 02:29:25,680 CARE. 4586 02:29:25,680 --> 02:29:27,960 THE COURTS IN THE UNITED STATES 4587 02:29:27,960 --> 02:29:31,240 AND EXAMPLES VERSUS UNITED 4588 02:29:31,240 --> 02:29:32,120 BEHAVIORAL HEALTH AS WELL AS OUR 4589 02:29:32,120 --> 02:29:33,800 FEDERAL AND STATE GOVERNMENTS 4590 02:29:33,800 --> 02:29:37,000 HAVE PASSED MENTAL HEALTH PARITY 4591 02:29:37,000 --> 02:29:37,480 LEGISLATION POINTING TO 4592 02:29:37,480 --> 02:29:38,520 GENERALLY ACCEPTED STANDARDS OF 4593 02:29:38,520 --> 02:29:39,760 CARE, AND IT'S IMPORTANT TO NOTE 4594 02:29:39,760 --> 02:29:42,360 THAT THERE ARE, AS AN EXAMPLE, 4595 02:29:42,360 --> 02:29:43,880 GENERALLY ACCEPTED STANDARDS OF 4596 02:29:43,880 --> 02:29:46,280 CARE FOR THE PROVISION OF 4597 02:29:46,280 --> 02:29:47,920 APPLIED BEHAVIOR ANALYSIS, THE 4598 02:29:47,920 --> 02:29:51,720 PRACTICE GUIDELINES FOR ABA ARE 4599 02:29:51,720 --> 02:29:52,720 ACTUALLY AVAILABLE ON OUR 4600 02:29:52,720 --> 02:29:53,880 WEBSITE AND HAVE BEEN 4601 02:29:53,880 --> 02:29:55,080 IMPLEMENTED BY SOME HEALTH 4602 02:29:55,080 --> 02:29:55,760 PLANS. 4603 02:29:55,760 --> 02:29:58,480 THE CALIFORNIA DEPARTMENT OF 4604 02:29:58,480 --> 02:29:59,560 INSURANCE HAS RECENTLY 4605 02:29:59,560 --> 02:30:00,680 RECOGNIZED THEM AS GENERALLY 4606 02:30:00,680 --> 02:30:02,600 ACCEPTED STANDARDS OF CARE 4607 02:30:02,600 --> 02:30:04,800 THERE, UNDER THEIR 4608 02:30:04,800 --> 02:30:05,440 SB855 REQUIREMENT. 4609 02:30:05,440 --> 02:30:08,800 SO AS YOU LOOK AT THE 4610 02:30:08,800 --> 02:30:11,440 INTERVENTION SECTION OF THE 4611 02:30:11,440 --> 02:30:13,040 STRATEGIC PLAN, I ASK THAT YOU 4612 02:30:13,040 --> 02:30:15,120 KEEP THAT IN MIND. 4613 02:30:15,120 --> 02:30:18,280 ADDITIONALLY, CASP RECENTLY 4614 02:30:18,280 --> 02:30:21,120 LAUNCHED AN ACCREDITATION 4615 02:30:21,120 --> 02:30:22,720 PROGRAM, TO FURTHER ENSURE 4616 02:30:22,720 --> 02:30:23,200 PROTECTIONS AND MEMBER 4617 02:30:23,200 --> 02:30:25,880 ORGANIZATIONS AND NON-MEMBER 4618 02:30:25,880 --> 02:30:27,320 ORGANIZATIONS CAN SEEK TO BE 4619 02:30:27,320 --> 02:30:27,680 ACCREDITED. 4620 02:30:27,680 --> 02:30:31,000 AND AGAIN, IT'S JUST ANOTHER 4621 02:30:31,000 --> 02:30:32,440 EFFORT TO ENSURE THAT THE 4622 02:30:32,440 --> 02:30:34,600 SERVICES THAT ARE BEING PROVIDED 4623 02:30:34,600 --> 02:30:36,040 TO AUTISTIC INDIVIDUALS ACROSS 4624 02:30:36,040 --> 02:30:38,760 THE LIFESPAN ARE APPROPRIATE, 4625 02:30:38,760 --> 02:30:40,040 THEY HAVE DIGNITY, RESPECT, 4626 02:30:40,040 --> 02:30:41,840 THEY'RE BASED ON EVIDENCE-BASED 4627 02:30:41,840 --> 02:30:42,120 PRACTICE. 4628 02:30:42,120 --> 02:30:43,440 SO I WANT TO THANK YOU ALL FOR 4629 02:30:43,440 --> 02:30:45,240 YOUR WORK TODAY. 4630 02:30:45,240 --> 02:30:46,600 THERE'S A LITTLE BIT MORE 4631 02:30:46,600 --> 02:30:48,680 INFORMATION IN THE COMMENT THAT 4632 02:30:48,680 --> 02:30:49,520 I WROTE. 4633 02:30:49,520 --> 02:30:50,880 I PROMISE IT'S NOT TOO MUCH 4634 02:30:50,880 --> 02:30:51,800 LONGER BUT WITH THAT, I JUST 4635 02:30:51,800 --> 02:30:53,680 THANK YOU FOR YOUR CONSIDERATION 4636 02:30:53,680 --> 02:30:57,240 AS YOU WORK ON THE STRATEGIC 4637 02:30:57,240 --> 02:30:58,760 PLAN TO DO YOUR VERY BEST FOR 4638 02:30:58,760 --> 02:30:59,920 AUTISTIC PEOPLE ALL OVER THE 4639 02:30:59,920 --> 02:31:01,120 COUNTRY MOVING FORWARD, 4640 02:31:01,120 --> 02:31:03,080 INCLUDING MY SON JACK. 4641 02:31:03,080 --> 02:31:05,320 THANK YOU. 4642 02:31:05,320 --> 02:31:09,040 >>THANK YOU SO MUCH, 4643 02:31:09,040 --> 02:31:10,360 MS. URSITTI, FOR SHARING YOUR 4644 02:31:10,360 --> 02:31:10,880 COMMENTS. 4645 02:31:10,880 --> 02:31:13,400 WE DO HAVE THE WRITTEN COMMENT 4646 02:31:13,400 --> 02:31:15,800 IN OUR PACKET TO SEEM WILL WANT 4647 02:31:15,800 --> 02:31:16,760 TO REVIEW THAT. 4648 02:31:16,760 --> 02:31:17,960 >>AND I DIDN'T COUGH. 4649 02:31:17,960 --> 02:31:18,680 I'M SO GLAD. 4650 02:31:18,680 --> 02:31:19,600 >>GREAT. 4651 02:31:19,600 --> 02:31:20,680 GLAD THAT WORKED OUT WELL FOR 4652 02:31:20,680 --> 02:31:20,880 YOU. 4653 02:31:20,880 --> 02:31:21,560 THANK YOU SO MUCH. 4654 02:31:21,560 --> 02:31:24,360 NEXT WE HAVE DR. AMY LUTZ, WHO 4655 02:31:24,360 --> 02:31:26,240 WOULD LIKE TO SHARE ON BEHALF OF 4656 02:31:26,240 --> 02:31:27,200 NATIONAL COUNCIL OF SEVERE 4657 02:31:27,200 --> 02:31:31,080 AUTISM. 4658 02:31:31,080 --> 02:31:33,720 >>THANK YOU, DR. DANIELS, AND 4659 02:31:33,720 --> 02:31:35,040 THANK YOU TO EVERYONE ON THE 4660 02:31:35,040 --> 02:31:36,920 COMMITTEE FOR THE OPPORTUNITY TO 4661 02:31:36,920 --> 02:31:37,680 SPEAK. 4662 02:31:37,680 --> 02:31:39,200 THE NATIONAL COUNCIL ON SEVERE 4663 02:31:39,200 --> 02:31:41,800 AUTISM IS EXTREMELY ALARMED AT 4664 02:31:41,800 --> 02:31:44,600 RECENT EFFORTS TO CLEANSE THE 4665 02:31:44,600 --> 02:31:46,040 IACC, ITS STRATEGIC PLAN AND 4666 02:31:46,040 --> 02:31:48,560 AUTISM RESEARCH MORE BROADLY OF 4667 02:31:48,560 --> 02:31:50,720 BASIC ACCURATE AND MEANINGFUL 4668 02:31:50,720 --> 02:31:53,240 LANGUAGE LIKE BEHAVIOR, RISK FOR 4669 02:31:53,240 --> 02:31:56,280 AUTISM, AND QUALITY OF LIFE. 4670 02:31:56,280 --> 02:31:57,680 THE CLEAR TREND HERE IS TO 4671 02:31:57,680 --> 02:31:59,360 MANDATE LANGUAGE THAT TREATS 4672 02:31:59,360 --> 02:32:01,320 AUTISM AS A NEUTRAL CONDITION OR 4673 02:32:01,320 --> 02:32:01,960 DIFFERENCE. 4674 02:32:01,960 --> 02:32:04,120 BUT CONGRESS DID NOT PASS THE 4675 02:32:04,120 --> 02:32:05,200 CARES ACT AND ALLOCATE HUNDREDS 4676 02:32:05,200 --> 02:32:07,600 OF MILLIONS OF DOLLARS TO 4677 02:32:07,600 --> 02:32:09,560 RESEARCH BECAUSE AUTISM IS A 4678 02:32:09,560 --> 02:32:12,360 NEUTRAL CONDITION. 4679 02:32:12,360 --> 02:32:13,680 THAT AN AUTISTIC CHILD CANNOT 4680 02:32:13,680 --> 02:32:15,120 LEARN TO SPEAK OR DEVELOP 4681 02:32:15,120 --> 02:32:18,400 ABSTRACT THOUGHT IS NOT NEUTRAL. 4682 02:32:18,400 --> 02:32:21,120 THE ABNORMAL NEUROGENESIS, 4683 02:32:21,120 --> 02:32:23,120 NEURAL MIGRATION, SNAP TOE 4684 02:32:23,120 --> 02:32:24,840 GENESIS AND NEURAL CONNECTIVITY 4685 02:32:24,840 --> 02:32:26,320 EVIDENT IN AUTISM ARE NOT 4686 02:32:26,320 --> 02:32:26,800 NEUTRAL. 4687 02:32:26,800 --> 02:32:28,880 THAT AN AUTISTIC INDIVIDUAL 4688 02:32:28,880 --> 02:32:30,920 ENGAGES IN SELF-INJURY OR 4689 02:32:30,920 --> 02:32:33,320 PERPETUALLY ELOPES OR DESTROYS 4690 02:32:33,320 --> 02:32:34,640 PROPERTY IS NOT NEUTRAL. 4691 02:32:34,640 --> 02:32:36,040 THAT COUNTLESS SIBLINGS LIVE IN 4692 02:32:36,040 --> 02:32:37,760 FEAR OF BEING ATTACKED BY THEIR 4693 02:32:37,760 --> 02:32:40,600 AUTISTIC BROTHER OR SISTER IS 4694 02:32:40,600 --> 02:32:41,280 NOT NEUTRAL. 4695 02:32:41,280 --> 02:32:43,360 THAT AN AUTISTIC INDIVIDUAL 4696 02:32:43,360 --> 02:32:45,760 FACES LIFE-THREATENING SEIZURES, 4697 02:32:45,760 --> 02:32:48,080 PICA OR GASTROINTESTINAL 4698 02:32:48,080 --> 02:32:51,280 DISTRESS IS NOT NEUTRAL. 4699 02:32:51,280 --> 02:32:53,920 THAT AN AUTISTIC CHILD SUFFERS 4700 02:32:53,920 --> 02:32:56,000 UNRELENTING INSOMNIA CAUSING 4701 02:32:56,000 --> 02:32:58,040 FAMILY-WIDE SLEEP DEPRIVATION IS 4702 02:32:58,040 --> 02:32:58,600 NOT NEUTRAL. 4703 02:32:58,600 --> 02:33:00,880 THAT PARENTS MUST SACRIFICE 4704 02:33:00,880 --> 02:33:02,200 CAREERS, INCOMES AND THEIR OWN 4705 02:33:02,200 --> 02:33:03,800 INDEPENDENT LIVES TO PERMANENTLY 4706 02:33:03,800 --> 02:33:06,000 CARE FOR SERIOUSLY DISABLED 4707 02:33:06,000 --> 02:33:07,480 AUTISTIC CHILDREN AND ADULTS IS 4708 02:33:07,480 --> 02:33:11,240 NOT NEUTRAL. 4709 02:33:11,240 --> 02:33:12,360 THAT AUTISTIC CHILDREN LACK 4710 02:33:12,360 --> 02:33:13,720 BASIC SAFETY AWARENESS TO THE 4711 02:33:13,720 --> 02:33:15,520 EXTENT THEY MAY RIGIDLY REFUSE 4712 02:33:15,520 --> 02:33:16,960 TO EXIT A BURNING HOUSE IS 4713 02:33:16,960 --> 02:33:19,760 CERTAINLY NOT NEUTRAL. 4714 02:33:19,760 --> 02:33:22,080 THAT GROWING NUMBERS OF AUTISTIC 4715 02:33:22,080 --> 02:33:23,360 ADULTS LACK BASIC COGNITIVE 4716 02:33:23,360 --> 02:33:24,800 FUNCTIONS TO LIVE INDEPENDENTLY 4717 02:33:24,800 --> 02:33:27,720 IS NOT NEUTRAL. 4718 02:33:27,720 --> 02:33:29,040 THAT WE SUFFER A TERRIBLE 4719 02:33:29,040 --> 02:33:31,640 SHORTAGE OF INPATIENT 4720 02:33:31,640 --> 02:33:32,560 PLACEMENTS, CRISIS CARE CENTERS, 4721 02:33:32,560 --> 02:33:34,800 CHILD AND ADULT PSYCHIATRISTS, 4722 02:33:34,800 --> 02:33:37,840 MEDICAL PERSONNEL TRAINED IN 4723 02:33:37,840 --> 02:33:39,160 AUTISM, AND RESIDENTIAL SUPPORT 4724 02:33:39,160 --> 02:33:41,000 CENTERS TO TREAT THE SURGING 4725 02:33:41,000 --> 02:33:42,520 POPULATION DISABLED BY AUTISM IS 4726 02:33:42,520 --> 02:33:45,360 NOT NEUTRAL. 4727 02:33:45,360 --> 02:33:46,920 THE STEADY GROWTH OF AUTISM 4728 02:33:46,920 --> 02:33:49,160 PREVALENCE NOW CLOSING IN ON 3% 4729 02:33:49,160 --> 02:33:51,680 OF U.S. CHILDREN AND 5% IN SOME 4730 02:33:51,680 --> 02:33:53,400 AREAS IS A NATIONAL CRISIS AND 4731 02:33:53,400 --> 02:33:56,800 NOT REMOTELY NEUTRAL. 4732 02:33:56,800 --> 02:33:59,880 THERE IS NOTHING INCLUSIVE ABOUT 4733 02:33:59,880 --> 02:34:01,080 NEUTRAL OR STRENGTH-SPACE 4734 02:34:01,080 --> 02:34:01,960 LANGUAGE THAT SPECIFICALLY 4735 02:34:01,960 --> 02:34:04,880 EXCLUDES OR DENIES REALITIES OF 4736 02:34:04,880 --> 02:34:06,200 AUTISM, PARTICULARLY SEVERE OR 4737 02:34:06,200 --> 02:34:07,840 PROFOUND AUTISM. 4738 02:34:07,840 --> 02:34:10,040 THIS IS A HIGH STAKES DEBATE. 4739 02:34:10,040 --> 02:34:11,960 WE MUST ENSURE ALL FEDERAL 4740 02:34:11,960 --> 02:34:13,400 EFFORTS RELATING TO AUTISM ARE 4741 02:34:13,400 --> 02:34:17,840 BASED ON REALITY, NOT FACT SEE. 4742 02:34:17,840 --> 02:34:18,280 FANTASY. 4743 02:34:18,280 --> 02:34:20,680 IF WE MUST BE NEUTRAL ABOUT 4744 02:34:20,680 --> 02:34:22,120 AUTISM, WE CAN'T EMPHASIZE THE 4745 02:34:22,120 --> 02:34:23,440 MOST URGENT PRIORITIES FACING 4746 02:34:23,440 --> 02:34:24,520 OUR COMMUNITY. 4747 02:34:24,520 --> 02:34:26,480 WE URGE THE IACC AND ITS 4748 02:34:26,480 --> 02:34:28,120 STRATEGIC PLAN TO FULLY INCLUDE 4749 02:34:28,120 --> 02:34:30,960 ALL REALITIES OF AUTISM, 4750 02:34:30,960 --> 02:34:33,120 INCLUDING ESPECIALLY ITS MOST 4751 02:34:33,120 --> 02:34:34,440 SEVERE MANIFESTATIONS, AND TO 4752 02:34:34,440 --> 02:34:36,200 FOCUS ON TRUE COMMUNITY 4753 02:34:36,200 --> 02:34:38,360 PRIORITIES USING LANGUAGE THAT 4754 02:34:38,360 --> 02:34:40,440 ACCURATELY AND MEANINGFULLY 4755 02:34:40,440 --> 02:34:41,840 CAPTURES OUR COMMUNITY'S 4756 02:34:41,840 --> 02:34:43,480 DESPERATE NEEDS. 4757 02:34:43,480 --> 02:34:45,200 THANK YOU SO MUCH. 4758 02:34:45,200 --> 02:34:47,080 >>THANK YOU, DR. LUTZ. 4759 02:34:47,080 --> 02:34:48,880 WE APPRECIATE YOU SHARING YOUR 4760 02:34:48,880 --> 02:34:49,560 PERSPECTIVES AND COMMENTS WITH 4761 02:34:49,560 --> 02:34:51,360 THE COMMITTEE. 4762 02:34:51,360 --> 02:34:54,320 NEXT I'D LIKE TO CALL ON AMY 4763 02:34:54,320 --> 02:35:01,400 MONMONTIMURO FROM ABILIS TO SHAE 4764 02:35:01,400 --> 02:35:02,680 HER COMMENTS. 4765 02:35:02,680 --> 02:35:04,440 >>THANK YOU. 4766 02:35:04,440 --> 02:35:05,640 ABILIS IS A CONNECTICUT 4767 02:35:05,640 --> 02:35:07,640 NON-PROFIT SUPPORTING OVER 800 4768 02:35:07,640 --> 02:35:08,480 INDIVIDUALS WITH DISABILITIES 4769 02:35:08,480 --> 02:35:09,680 AND THEIR FAMILIES. 4770 02:35:09,680 --> 02:35:12,200 45% OF THE ADULTS WHO SUPPORT 4771 02:35:12,200 --> 02:35:13,240 HAVE AUTISM. 4772 02:35:13,240 --> 02:35:16,760 WE LAUNCHED OUR SUPPORTIVE 4773 02:35:16,760 --> 02:35:18,400 TYPING PROGRAM AFTER INCREDIBLE 4774 02:35:18,400 --> 02:35:19,920 OUTCOMES FROM A SMALL SAMPLE IN 4775 02:35:19,920 --> 02:35:25,200 FEBRUARY OF 2019. 4776 02:35:25,200 --> 02:35:28,360 A STEP PARTICIPANT WHOSE LIFE 4777 02:35:28,360 --> 02:35:30,960 HAS BEEN TRANSFORMED BECAUSE OF 4778 02:35:30,960 --> 02:35:31,960 OUR PROGRAM TYPE PPED THE 4779 02:35:31,960 --> 02:35:33,440 FOLLOWING: M I AM FREE NOW OF 4780 02:35:33,440 --> 02:35:34,600 THE FRUSTRATION OF NOT BEING 4781 02:35:34,600 --> 02:35:36,200 ABLE TO TELL YOU MY THOUGHTS AND 4782 02:35:36,200 --> 02:35:39,480 THAT HAS MADE A HUGE DIFFERENCE. 4783 02:35:39,480 --> 02:35:40,680 PEOPLE SEE ME DIFFERENTLY AND I 4784 02:35:40,680 --> 02:35:43,880 THINK DIFFERENTLY. 4785 02:35:43,880 --> 02:35:45,520 I NOW HAVE HOPE FOR FREEDOM IN 4786 02:35:45,520 --> 02:35:46,840 MY LIFE THAT I'VE NEVER HAD 4787 02:35:46,840 --> 02:35:47,280 BEFORE. 4788 02:35:47,280 --> 02:35:49,280 PLEASE GIVE ME AND OTHERS LIKE 4789 02:35:49,280 --> 02:35:50,360 ME THE CHANCE TO BE THE PEOPLE 4790 02:35:50,360 --> 02:35:56,000 THAT WE REALLY ARE. 4791 02:35:56,000 --> 02:35:57,640 ABILIS STRIVES TO CREATE A 4792 02:35:57,640 --> 02:35:59,120 COMMUNITY OF TYPIERS AND 4793 02:35:59,120 --> 02:36:00,560 FACILITATORS USING BEST 4794 02:36:00,560 --> 02:36:01,880 PRACTICES TO ENSURE WORDS BEING 4795 02:36:01,880 --> 02:36:04,040 TYPED ARE THE PERSON'S OWN 4796 02:36:04,040 --> 02:36:05,440 AUTHENTIC VOICE. 4797 02:36:05,440 --> 02:36:08,360 FOR THREE INDIVIDUALS WHO ARE 4798 02:36:08,360 --> 02:36:10,480 PART OF OUR 2019 SAMPLE, 4799 02:36:10,480 --> 02:36:11,560 INDEPENDENT TYPING IS NOW AN 4800 02:36:11,560 --> 02:36:13,400 EMERGING SKILL. 4801 02:36:13,400 --> 02:36:15,680 IN MARCH OF 2020, WITH THE ONSET 4802 02:36:15,680 --> 02:36:17,640 OF COVID, OUR STEP PROGRAM MOVED 4803 02:36:17,640 --> 02:36:20,600 TO AN ONLINE COACHING, TRAINING, 4804 02:36:20,600 --> 02:36:24,200 SOCIAL GROUPS AND WORKSHOPS. 4805 02:36:24,200 --> 02:36:25,400 THIS UNEXPECTED SHIFT ALLOWED US 4806 02:36:25,400 --> 02:36:27,120 TO REACH WAY BEYOND OUR 4807 02:36:27,120 --> 02:36:27,480 CATCHMENT AREA. 4808 02:36:27,480 --> 02:36:30,520 WE HAVE WORKED WITH TYPIERS AND 4809 02:36:30,520 --> 02:36:32,320 FACILITATORS FROM 18 STATES AND 4810 02:36:32,320 --> 02:36:35,200 FIVE COUNTRIES. 4811 02:36:35,200 --> 02:36:36,880 DURING THE PAST TWO YEARS 4812 02:36:36,880 --> 02:36:40,840 THROUGH ZOOM, WE HAVE TRAINED 4813 02:36:40,840 --> 02:36:41,520 OVER 175 FACILITATORS, WHICH 4814 02:36:41,520 --> 02:36:45,480 INCLUDES PARENTS AND STAFF 4815 02:36:45,480 --> 02:36:47,520 MEMBERS FROM OS LIKE ABILIS 4816 02:36:47,520 --> 02:36:48,240 AROUND THE COUNTRY. 4817 02:36:48,240 --> 02:36:49,880 IN SOME STATES, THERE HAS BEEN 4818 02:36:49,880 --> 02:36:51,280 GOVERNMENT FUNDING FOR INITIAL 4819 02:36:51,280 --> 02:36:54,480 ASSESSMENTS, ONGOING COACHING, 4820 02:36:54,480 --> 02:36:56,240 SOCIAL GROUP -- SOME STATES 4821 02:36:56,240 --> 02:36:57,440 REIMBURSE SERVICES PROVIDED BY 4822 02:36:57,440 --> 02:36:58,680 OUR PROGRAM THROUGH 4823 02:36:58,680 --> 02:37:00,720 SELF-DETERMINATION. 4824 02:37:00,720 --> 02:37:03,360 OUR CLIENTS AND THEIR FAMILIES 4825 02:37:03,360 --> 02:37:04,480 OFTEN DESCRIBE THE SIGNIFICANT 4826 02:37:04,480 --> 02:37:05,960 LIFE CHANGES THAT OCCUR WHEN 4827 02:37:05,960 --> 02:37:08,480 SOMEONE LEARNS TO TYPE TO 4828 02:37:08,480 --> 02:37:09,360 COMMUNICATE. 4829 02:37:09,360 --> 02:37:10,960 HOWEVER, MANY SCHOOL DISTRICTS 4830 02:37:10,960 --> 02:37:13,080 DENY ACCESS TO THESE TYPING 4831 02:37:13,080 --> 02:37:15,200 METHODS EVEN AFTER PARENTS AND 4832 02:37:15,200 --> 02:37:18,840 THERAPISTS HAVE DEMONSTRATED 4833 02:37:18,840 --> 02:37:20,280 SUCCESSFUL COMMUNICATION WHEN 4834 02:37:20,280 --> 02:37:22,360 THEIR AUTISTIC CHILD IS TRAINED 4835 02:37:22,360 --> 02:37:23,760 WITH A COMMUNICATION PARTNER. 4836 02:37:23,760 --> 02:37:27,600 POLICY STATEMENTS FROM SOME 4837 02:37:27,600 --> 02:37:28,480 PROFESSIONALS OR SOME 4838 02:37:28,480 --> 02:37:30,720 PROFESSIONAL ORGANIZATIONS 4839 02:37:30,720 --> 02:37:31,640 STIFLES EDUCATIONAL 4840 02:37:31,640 --> 02:37:33,800 OPPORTUNITIES FOR MANY. 4841 02:37:33,800 --> 02:37:35,880 THEIR ARGUMENTS RELY ON DATED, 4842 02:37:35,880 --> 02:37:39,040 LIMITED, FLAWED RESEARCH TO DENY 4843 02:37:39,040 --> 02:37:40,040 SERVICES. 4844 02:37:40,040 --> 02:37:42,560 COMMUNICATORS FEEL UNSEEN, 4845 02:37:42,560 --> 02:37:45,800 DISRESPECTED AND INCREDIBLY 4846 02:37:45,800 --> 02:37:46,200 FRUSTRATED. 4847 02:37:46,200 --> 02:37:48,440 WE ASK THAT THE IACC RECOGNIZE 4848 02:37:48,440 --> 02:37:53,120 THAT SOME FORMS OF AAC SUCH AS 4849 02:37:53,120 --> 02:37:55,400 XC, RPM AND S2C ARE CURRENTLY 4850 02:37:55,400 --> 02:37:57,680 BEING UTILIZED AND ARE WORTHY OF 4851 02:37:57,680 --> 02:37:58,880 FURTHER SCIENTIFIC INQUIRY. 4852 02:37:58,880 --> 02:38:01,200 WE SUGGEST THE FOLLOWING 4853 02:38:01,200 --> 02:38:02,160 RESEARCH OPPORTUNITIES. 4854 02:38:02,160 --> 02:38:04,560 HOW CAN WE BETTER IDENTIFY 4855 02:38:04,560 --> 02:38:06,080 INDIVIDUALS WHO WILL BENEFIT 4856 02:38:06,080 --> 02:38:09,040 FROM FCRPM AND S2C? 4857 02:38:09,040 --> 02:38:11,480 HOW DO INDIVIDUALS WITH THE 4858 02:38:11,480 --> 02:38:12,960 COMMUNICATION PARTNER LEARN 4859 02:38:12,960 --> 02:38:13,640 INDEPENDENCE? 4860 02:38:13,640 --> 02:38:16,800 AND HOW CAN WE MEASURE THE 4861 02:38:16,800 --> 02:38:18,400 COGNITIVE AND SOCIAL/EMOTIONAL 4862 02:38:18,400 --> 02:38:21,720 GROWTH OF TYPIERS AND THE IMPACT 4863 02:38:21,720 --> 02:38:22,920 ON INDEPENDENT LIFE SKILLS? 4864 02:38:22,920 --> 02:38:25,760 THANK YOU VERY MUCH. 4865 02:38:25,760 --> 02:38:27,800 >>THANK YOU, MS. MONTIMURO, FOR 4866 02:38:27,800 --> 02:38:28,800 SHARING THOSE COMMENTS WITH US. 4867 02:38:28,800 --> 02:38:31,720 WE APPRECIATE IT. 4868 02:38:31,720 --> 02:38:33,480 NEXT I'D LIKE TO CALL ON RIEKO 4869 02:38:33,480 --> 02:38:35,280 SHEPHERD TO SHARE COMMENTS ON 4870 02:38:35,280 --> 02:38:37,080 BEHALF OF THE AUTISM WOMEN AND 4871 02:38:37,080 --> 02:38:40,320 NON-BINARY NETWORK. 4872 02:38:40,320 --> 02:38:40,920 >>THANK YOU. 4873 02:38:40,920 --> 02:38:42,560 I JUST WANT TO MAKE A QUICK NOTE 4874 02:38:42,560 --> 02:38:45,320 THAT I REPRESENT THE AUTISTIC 4875 02:38:45,320 --> 02:38:48,080 WOMEN AND NON-BINARY NETWORK, SO 4876 02:38:48,080 --> 02:38:50,760 IF YOU'RE LOOKING FOR US, THE A 4877 02:38:50,760 --> 02:38:53,960 SHOULD STAND FOR AUTISTIC. 4878 02:38:53,960 --> 02:38:55,400 AWN TOGETHER WITH THE AUTISTIC 4879 02:38:55,400 --> 02:38:56,920 PEOPLE OF COLOR FUND APPRECIATE 4880 02:38:56,920 --> 02:38:59,400 THE OPPORTUNITY TO SUBMIT 4881 02:38:59,400 --> 02:39:02,720 COMMENTARY TO THE IACC TODAY. 4882 02:39:02,720 --> 02:39:04,040 AWN IS A NATIONAL NON-PROFIT 4883 02:39:04,040 --> 02:39:07,480 THAT SUPPORTS WOMEN, GIRLS, 4884 02:39:07,480 --> 02:39:09,920 TRANS FEMININE AND TRANS 4885 02:39:09,920 --> 02:39:12,400 MASCULINE NON-BINARY PEOPLE AND 4886 02:39:12,400 --> 02:39:14,280 PEOPLE OF ALL GENDERS. 4887 02:39:14,280 --> 02:39:15,840 TOGETHER TO DIRECT POLICY 4888 02:39:15,840 --> 02:39:18,080 RESEARCH AND COMMUNITY ADVOCACY 4889 02:39:18,080 --> 02:39:18,880 TO ADVANCE HEALTH AND 4890 02:39:18,880 --> 02:39:19,840 INDEPENDENCE OF ALL DISABLED 4891 02:39:19,840 --> 02:39:20,920 PEOPLE. 4892 02:39:20,920 --> 02:39:22,480 ALL AUTISTIC PEOPLE ARE AT A 4893 02:39:22,480 --> 02:39:25,080 HIGHER RISK OF UNEMPLOYMENT, 4894 02:39:25,080 --> 02:39:26,720 POORER HEALTH AND OTHER ADVERSE 4895 02:39:26,720 --> 02:39:29,000 OUTCOMES THAN THEIR NON-AUTISTIC 4896 02:39:29,000 --> 02:39:29,640 COUNTERPART. 4897 02:39:29,640 --> 02:39:31,600 HOWEVER, THEY FACE FURTHER 4898 02:39:31,600 --> 02:39:33,920 OPPRESSION ON ACCOUNT OF RACISM, 4899 02:39:33,920 --> 02:39:36,560 ANTI-QUEER DISCRIMINATION AND 4900 02:39:36,560 --> 02:39:37,520 ANTI-IMMIGRANT PREJUDICE. 4901 02:39:37,520 --> 02:39:38,400 WHEN RESEARCH STUDIES DO NOT 4902 02:39:38,400 --> 02:39:40,680 INCLUDE OR FOCUS ON DIVERSE 4903 02:39:40,680 --> 02:39:41,880 POPULATIONS, THIS LACK OF 4904 02:39:41,880 --> 02:39:43,720 INFORMATION CAN BE 4905 02:39:43,720 --> 02:39:44,920 MISINTERPRETED AS INDICATING A 4906 02:39:44,920 --> 02:39:46,800 LOWER PREVALENCE OF AUTISM, 4907 02:39:46,800 --> 02:39:48,680 WHICH IN TURN CAN LEAD TO 4908 02:39:48,680 --> 02:39:50,320 UNDERFUNDING SERVICES THAT COULD 4909 02:39:50,320 --> 02:39:52,160 BEST SUPPORT AND RESPOND TO THE 4910 02:39:52,160 --> 02:39:55,560 SPECIFIC NEEDS OF THESE 4911 02:39:55,560 --> 02:39:56,080 MARGINALIZED COMMUNITIES. 4912 02:39:56,080 --> 02:39:57,760 WE URGE THE IACC TO PRIORITIZE 4913 02:39:57,760 --> 02:39:59,280 THE FOLLOWING RESEARCH TOPICS 4914 02:39:59,280 --> 02:40:00,920 AND ALSO ENSURE THAT THIS 4915 02:40:00,920 --> 02:40:04,640 RESEARCH IS INFORMED AND LED BY 4916 02:40:04,640 --> 02:40:08,800 AUTISTIC PRINCIPAL AND 4917 02:40:08,800 --> 02:40:09,360 CO-PRINCIPAL INVESTIGATORS. 4918 02:40:09,360 --> 02:40:10,640 THE FIRST TOPIC IS EXPLORING THE 4919 02:40:10,640 --> 02:40:12,720 IMPACT OF RACISM AND 4920 02:40:12,720 --> 02:40:13,840 ANTIIMMIGRANT DISCRIMINATION ON 4921 02:40:13,840 --> 02:40:16,760 THE MENTAL HEALTH OF YOU A TIS C 4922 02:40:16,760 --> 02:40:17,720 PEOPLE. 4923 02:40:17,720 --> 02:40:19,160 SYSTEMIC RACISM AND 4924 02:40:19,160 --> 02:40:19,880 ANTI-IMMIGRANT DISCRIMINATION 4925 02:40:19,880 --> 02:40:21,440 CONTRIBUTE TO INCREASED RATES 4926 02:40:21,440 --> 02:40:23,400 AND SEVERITY OF PSYCHOLOGICAL 4927 02:40:23,400 --> 02:40:25,160 DISTRESS, BUT WE NEED MORE 4928 02:40:25,160 --> 02:40:26,440 EMPIRICAL RESEARCH TO PROVIDE 4929 02:40:26,440 --> 02:40:29,160 THOSE APPROPRIATE SUPPORTS. 4930 02:40:29,160 --> 02:40:30,360 TWO, THE PREVALENCE OF SCHOOL 4931 02:40:30,360 --> 02:40:32,480 EXCLUSIONS AND COURT INVOLVEMENT 4932 02:40:32,480 --> 02:40:37,920 FOR YOU A TITIOFOR AUTISTIC STU. 4933 02:40:37,920 --> 02:40:39,000 MOST FOCUS ON STUDENTS WITH 4934 02:40:39,000 --> 02:40:41,760 DISABILITIES AS A WHOLE BUT YOUU 4935 02:40:41,760 --> 02:40:42,960 AUTISTIC STUDENTS OF COLORS MAY 4936 02:40:42,960 --> 02:40:46,000 NEED STRATEGIES TO PROTECT THEM. 4937 02:40:46,000 --> 02:40:47,600 THREE, HEALTH DISPARITIES FOCUS 4938 02:40:47,600 --> 02:40:50,360 ON AUTISTIC PEOPLE OF COLOR. 4939 02:40:50,360 --> 02:40:52,000 LGBTQ CLASS OF AUTISTIC PEOPLE 4940 02:40:52,000 --> 02:40:53,920 AND AUTISTIC IMMIGRANTS AND 4941 02:40:53,920 --> 02:40:54,600 REFUGEES WITH A GOAL OF 4942 02:40:54,600 --> 02:40:56,040 DEVELOPING GUIDELINES AND 4943 02:40:56,040 --> 02:40:57,560 STANDARDS AND CULTURAL 4944 02:40:57,560 --> 02:40:58,760 COMPETENCY AND COMMUNICATION 4945 02:40:58,760 --> 02:41:00,720 ACCESS. 4946 02:41:00,720 --> 02:41:02,480 FOUR, PREVALENCE OF HOUSING 4947 02:41:02,480 --> 02:41:03,800 INSTABILITY FOR AUTISTIC PEOPLE 4948 02:41:03,800 --> 02:41:06,400 WITH ADDITIONAL DEMOGRAPHIC 4949 02:41:06,400 --> 02:41:08,800 ANALYSIS ACROSS RACE, LGBTQ-PLUS 4950 02:41:08,800 --> 02:41:12,000 STATUS, AND IMGRAND ANTI/OR 4951 02:41:12,000 --> 02:41:12,960 REFUGEE STATUS. 4952 02:41:12,960 --> 02:41:13,960 FIVE, EMPLOYMENT RATES FOR 4953 02:41:13,960 --> 02:41:16,440 AUTISTIC PEOPLE WITH ADDITIONAL 4954 02:41:16,440 --> 02:41:18,640 DEMOGRAPHIC ANALYSIS ACROSS 4955 02:41:18,640 --> 02:41:21,360 RACE, LGBTQ+ STATUS AND IMGRAND 4956 02:41:21,360 --> 02:41:22,560 AND/OR REFUGEE STATUS WITH THE 4957 02:41:22,560 --> 02:41:24,080 GOAL OF DEVELOPING STRATEGIES 4958 02:41:24,080 --> 02:41:26,840 FOR INCREASING COMPETITIVE, 4959 02:41:26,840 --> 02:41:27,720 INTEGRATED EMPLOYMENT. 4960 02:41:27,720 --> 02:41:29,360 SIX, THE EFFECTS OF LINGUISTIC 4961 02:41:29,360 --> 02:41:31,320 AND CULTURAL BARRIERS ON 4962 02:41:31,320 --> 02:41:33,280 AUTISTIC IMMIGRANTS AND REFUGEE, 4963 02:41:33,280 --> 02:41:36,240 ADJUSTING TO LIFE IN THE UNITED 4964 02:41:36,240 --> 02:41:36,800 STATES. 4965 02:41:36,800 --> 02:41:38,760 AND SEVEN, RESEARCH EXPLORING 4966 02:41:38,760 --> 02:41:40,920 NEGATIVE REPERCUSSIONS OR 4967 02:41:40,920 --> 02:41:42,360 PERMANENT PUNISHMENTS FOR 4968 02:41:42,360 --> 02:41:43,600 FORMERLY INCARCERATED AUTISTIC 4969 02:41:43,600 --> 02:41:45,760 PEOPLE INCLUDING BUT NOT LIMITED 4970 02:41:45,760 --> 02:41:47,480 TO HOUSING OR EDUCATIONAL 4971 02:41:47,480 --> 02:41:49,640 OUTCOMES OR HEALTH OUTCOMES WITH 4972 02:41:49,640 --> 02:41:52,200 ADDITIONAL DEMOGRAPHIC ANALYSIS 4973 02:41:52,200 --> 02:41:55,280 ACROSS RACE, LGBTQ+ STATUS, 4974 02:41:55,280 --> 02:41:57,240 IMMIGRANT OR REFUGEE STATUS, AND 4975 02:41:57,240 --> 02:41:59,080 FINALLY EIGHT, ACCESS TO 4976 02:41:59,080 --> 02:42:01,920 ALTERNATIVE AND AUGMENTIVE 4977 02:42:01,920 --> 02:42:03,880 COMMUNICATION TO THE SAME 4978 02:42:03,880 --> 02:42:04,520 DEMOGRAPHIC CRITERIA I 4979 02:42:04,520 --> 02:42:04,920 PREVIOUSLY LISTED. 4980 02:42:04,920 --> 02:42:05,520 THANK YOU. 4981 02:42:05,520 --> 02:42:07,840 >>THANK YOU SO MUCH, 4982 02:42:07,840 --> 02:42:09,000 MS. SHEPHERD, FOR SHARING THOSE 4983 02:42:09,000 --> 02:42:09,280 COMMENTS. 4984 02:42:09,280 --> 02:42:14,200 WE APPRECIATE YOU BEING HERE. 4985 02:42:14,200 --> 02:42:15,960 FINALLY, I'D LIKE TO HEAR FROM 4986 02:42:15,960 --> 02:42:17,400 ELLIOT GAVIN KEENAN. 4987 02:42:17,400 --> 02:42:18,600 >>HI. 4988 02:42:18,600 --> 02:42:20,880 THANK YOU VERY MUCH FOR HEARING 4989 02:42:20,880 --> 02:42:22,960 MY COMMENT TODAY. 4990 02:42:22,960 --> 02:42:25,160 MY NAME IS ELLIOT GAVIN KEENAN. 4991 02:42:25,160 --> 02:42:28,200 I'M A DOCTORAL CANDIDATE AT UCL 4992 02:42:28,200 --> 02:42:30,240 A AND A VISITING SCHOLAR AT 4993 02:42:30,240 --> 02:42:31,920 STONY BROOK UNIVERSITY. 4994 02:42:31,920 --> 02:42:34,960 I STUDY AUTISM AND I AM ALSO 4995 02:42:34,960 --> 02:42:35,320 AUTISTIC. 4996 02:42:35,320 --> 02:42:37,160 I WAS DIAGNOSED AT THE AGE OF 6. 4997 02:42:37,160 --> 02:42:40,880 MY PARENTS WERE TOLD THAT I WAS, 4998 02:42:40,880 --> 02:42:42,280 QUOTE-UNQUOTE, HIGH FUNCTIONING. 4999 02:42:42,280 --> 02:42:44,000 I WANT TO TALK ABOUT THIS 5000 02:42:44,000 --> 02:42:44,480 CONCEPT TODAY. 5001 02:42:44,480 --> 02:42:46,960 WHAT DOES IT MEAN TO BE HIGH OR 5002 02:42:46,960 --> 02:42:49,000 LOW FUNCTIONING OR 5003 02:42:49,000 --> 02:42:50,600 ALTERNATIVELY, TO HAVE SEVERE 5004 02:42:50,600 --> 02:42:52,080 AUTISM? 5005 02:42:52,080 --> 02:42:55,640 FOR ME, WHAT MY PARENTS WERE 5006 02:42:55,640 --> 02:42:57,560 TOLD WHEN I WAS 6 WAS AN 5007 02:42:57,560 --> 02:43:01,200 IMPORTANT AND MEANINGFUL WAY, A 5008 02:43:01,200 --> 02:43:01,640 LIE. 5009 02:43:01,640 --> 02:43:03,760 I HAVE BIPOLAR 1 DISORDER. 5010 02:43:03,760 --> 02:43:05,240 WHEN I WAS 9 YEARS OLD, I FELL 5011 02:43:05,240 --> 02:43:06,760 INTO A DARK DEPRESSION THAT 5012 02:43:06,760 --> 02:43:09,040 LASTED FOR SEVERAL YEARS. 5013 02:43:09,040 --> 02:43:10,480 THIS WAS DUE TO THE GENES THAT I 5014 02:43:10,480 --> 02:43:13,120 WAS BORN WITH, AND MANY OF THOSE 5015 02:43:13,120 --> 02:43:14,600 GENES ARE THE SAME GENES THAT 5016 02:43:14,600 --> 02:43:19,200 HAVE BEEN IDENTIFIED AS CAUSING 5017 02:43:19,200 --> 02:43:19,960 AUTISM. 5018 02:43:19,960 --> 02:43:22,400 MY NORMAL IS FAR FROM THE NORMAL 5019 02:43:22,400 --> 02:43:25,480 DAY TO DAY LIFE MOST PARENTS 5020 02:43:25,480 --> 02:43:26,680 ENVISION FOR THEIR CHILDREN. 5021 02:43:26,680 --> 02:43:28,840 OVER THE PAST SEVERAL YEARS, I 5022 02:43:28,840 --> 02:43:32,000 HAVE BEEN HOSPITALIZED 20 TIMES 5023 02:43:32,000 --> 02:43:33,560 IN A LOCKED INPATIENT 5024 02:43:33,560 --> 02:43:35,720 PSYCHIATRIC UNIT. 5025 02:43:35,720 --> 02:43:37,360 WHENEVER PEOPLE POST GUIDELINES 5026 02:43:37,360 --> 02:43:41,240 ON WHAT CONSTITUTES HIGH OR LOW 5027 02:43:41,240 --> 02:43:43,160 FUNCTIONING, I CAN'T HELP ABOUT 5028 02:43:43,160 --> 02:43:45,720 COMPARE MYSELF TO WHATEVER 5029 02:43:45,720 --> 02:43:46,880 ARBITRARY METRIC IS BEING 5030 02:43:46,880 --> 02:43:48,120 TAUGHTED TODAY TO CAPTURE WHAT 5031 02:43:48,120 --> 02:43:51,720 IS REALLY AN INAFFABLE SORT OF 5032 02:43:51,720 --> 02:43:52,560 QUALITY. 5033 02:43:52,560 --> 02:43:53,760 LIVING INDEPENDENTLY, WE TRIED 5034 02:43:53,760 --> 02:43:55,320 IT AND FAILED. 5035 02:43:55,320 --> 02:43:56,800 MY PARENTS NOW KEEP ME IN THEIR 5036 02:43:56,800 --> 02:43:58,160 HOME. 5037 02:43:58,160 --> 02:44:02,240 PERSONAL SAFETY OR NEED FOR 5038 02:44:02,240 --> 02:44:03,280 SUPERVISION, I'M CHRONICALLY 5039 02:44:03,280 --> 02:44:05,040 SUICIDAL AND HAVE A HISTORY OF 5040 02:44:05,040 --> 02:44:07,360 MEDICALLY SERIOUS DRUG OVERDOSE. 5041 02:44:07,360 --> 02:44:08,040 HYGIENE? 5042 02:44:08,040 --> 02:44:09,320 SHOWERING ONCE A WEEK ISN'T THAT 5043 02:44:09,320 --> 02:44:12,280 BAD FOR ME, AND I WON'T BRUSH MY 5044 02:44:12,280 --> 02:44:14,120 TEETH UNLESS SOMEONE PHYSICALLY 5045 02:44:14,120 --> 02:44:16,640 FORCES ME, DRAGS ME TO THE SINK. 5046 02:44:16,640 --> 02:44:19,920 IT MAY SEEM ODD TO INCLUDE 5047 02:44:19,920 --> 02:44:22,440 BIPOLARITY IN OUR ASSESSMENT OF 5048 02:44:22,440 --> 02:44:23,560 FUNCTIONING AS IT RELATES TO 5049 02:44:23,560 --> 02:44:25,120 AUTISM, BUT THAT'S JUST THE 5050 02:44:25,120 --> 02:44:25,320 THING. 5051 02:44:25,320 --> 02:44:27,680 WE'VE BEEN BUNDLING INTELLECTUAL 5052 02:44:27,680 --> 02:44:28,880 DISABILITY TOGETHER WITH AUTISM 5053 02:44:28,880 --> 02:44:31,760 LIKE A BUY ONE, GET ONE GIFT FOR 5054 02:44:31,760 --> 02:44:32,400 YEARS. 5055 02:44:32,400 --> 02:44:35,240 TRUE, NOT EVERY CONDITION THAT A 5056 02:44:35,240 --> 02:44:36,440 PERSON CAN EXPERIENCE IS 5057 02:44:36,440 --> 02:44:38,280 CO-MORBID WITH AUTISM AT THE 5058 02:44:38,280 --> 02:44:39,640 POPULATION LEVEL. 5059 02:44:39,640 --> 02:44:40,920 BUT MANY ARE. 5060 02:44:40,920 --> 02:44:43,560 I'M TALKING ABOUT ALMOST EVERY 5061 02:44:43,560 --> 02:44:46,280 PSYCHIATRIC DISORDER: EPILEPSY, 5062 02:44:46,280 --> 02:44:47,360 GI PROBLEMS AND MORE. 5063 02:44:47,360 --> 02:44:50,320 IF THESE CONDITIONS IMPACT LEVEL 5064 02:44:50,320 --> 02:44:51,960 OF FUNCTIONING, IS THAT NOT THE 5065 02:44:51,960 --> 02:44:55,720 SEVERITY OF AUTISM? 5066 02:44:55,720 --> 02:44:56,840 BY DISASSOCIATING THE PARTS OF 5067 02:44:56,840 --> 02:44:58,200 ONE GREATER ENTITY INTEREST EACH 5068 02:44:58,200 --> 02:44:59,520 OTHER, WE CAN FIT THEM INTO NEAT 5069 02:44:59,520 --> 02:45:02,040 LITTLE BOXES AND MINIMIZE THE 5070 02:45:02,040 --> 02:45:03,880 IMPORTANCE OF SOME. 5071 02:45:03,880 --> 02:45:07,040 I HUMBLY ASK THE IACC TO 5072 02:45:07,040 --> 02:45:08,920 CONSIDER IN THE CONTEXT OF 5073 02:45:08,920 --> 02:45:11,320 MODERN CONTROVERSY THE ROLE 5074 02:45:11,320 --> 02:45:13,640 CO-MORBID CONDITIONS PLAY IN THE 5075 02:45:13,640 --> 02:45:17,040 SEVERITY OR SUPPORT NEEDS OF 5076 02:45:17,040 --> 02:45:17,480 AUTISM. 5077 02:45:17,480 --> 02:45:18,880 AND HOW FUNCTIONING CATEGORIES 5078 02:45:18,880 --> 02:45:20,480 MAY BE MISLEADING. 5079 02:45:20,480 --> 02:45:21,600 PEOPLE DON'T FOLLOW STRAIGHT 5080 02:45:21,600 --> 02:45:21,840 LINES. 5081 02:45:21,840 --> 02:45:25,760 A LOT OF RHETORIC THESE DISPLAYS 5082 02:45:25,760 --> 02:45:27,200 ON THE PERCEIVED IMPOSSIBILITY 5083 02:45:27,200 --> 02:45:30,040 OF A HIGH FUNCTIONING ADULTERY 5084 02:45:30,040 --> 02:45:32,560 GRESSING INTO LOW FUNCTIONING. 5085 02:45:32,560 --> 02:45:36,160 BUT THESE LABELS AREN'T 5086 02:45:36,160 --> 02:45:36,720 INDIVIDUALS. 5087 02:45:36,720 --> 02:45:37,800 THEY'RE STATES OF EXPERIENCE 5088 02:45:37,800 --> 02:45:39,880 THAT WE MAY LIVE IN OR PASS 5089 02:45:39,880 --> 02:45:41,840 THROUGH ON OUR JOURNEYS. 5090 02:45:41,840 --> 02:45:45,800 FINALLY, WITH HE NEE WE NEED TOY 5091 02:45:45,800 --> 02:45:46,840 CO-MORBID CONDITIONS IN AUTISM 5092 02:45:46,840 --> 02:45:47,840 ACROSS ALL LEVELS OF 5093 02:45:47,840 --> 02:45:51,160 FUNCTIONING. 5094 02:45:51,160 --> 02:45:52,880 >>THANK YOU SO MUCH, 5095 02:45:52,880 --> 02:45:54,520 MR. KEENAN, FOR YOUR COMMENTS AS 5096 02:45:54,520 --> 02:45:55,720 WELL, AND THANK YOU TO ALL OF 5097 02:45:55,720 --> 02:45:57,120 YOU, ALL OF THE COMMENTS THAT 5098 02:45:57,120 --> 02:45:59,560 YOU'VE SHARED ARE RELATED TO 5099 02:45:59,560 --> 02:46:00,960 DIFFERENT PARTS OF OUR STRATEGIC 5100 02:46:00,960 --> 02:46:02,600 PLAN AND AS YOU MAY HAVE HEARD 5101 02:46:02,600 --> 02:46:03,840 IF YOU LISTENED TO OUR SESSION 5102 02:46:03,840 --> 02:46:04,920 EARLIER, OUR COMMITTEE IS 5103 02:46:04,920 --> 02:46:06,560 WORKING VERY HARD ON THAT 5104 02:46:06,560 --> 02:46:07,640 STRATEGIC PLAN AND I KNOW THAT 5105 02:46:07,640 --> 02:46:08,960 THEY WILL TAKE YOUR COMMENTS 5106 02:46:08,960 --> 02:46:12,680 INTO CONSIDERATION. 5107 02:46:12,680 --> 02:46:14,560 SO NEXT I'D LIKE TO MOVE TO THE 5108 02:46:14,560 --> 02:46:15,760 WRITTEN COMMENTS, JUST TO GIVE 5109 02:46:15,760 --> 02:46:19,480 YOU A SENSE OF WHAT WE RECEIVED, 5110 02:46:19,480 --> 02:46:21,240 THE FULL PACKET IS ONLINE ON OUR 5111 02:46:21,240 --> 02:46:22,880 WEBSITE AND OUR MEMBERS AS WELL 5112 02:46:22,880 --> 02:46:24,400 AS THE MEMBERS OF THE PUBLIC CAN 5113 02:46:24,400 --> 02:46:25,400 ACCESS THESE COMMENTS TO READ 5114 02:46:25,400 --> 02:46:26,360 THEM IN FULL. 5115 02:46:26,360 --> 02:46:29,120 WE'RE NOT ABLE TO OBVIOUSLY HEAR 5116 02:46:29,120 --> 02:46:30,640 ALL OF THEM IN THIS MEETING AS 5117 02:46:30,640 --> 02:46:33,160 THERE ARE MANY, BUT WE HAD 43 5118 02:46:33,160 --> 02:46:35,360 COMMENTS THAT RELATE TO RESEARCH 5119 02:46:35,360 --> 02:46:38,560 AND SERVICE NEEDS, RESOURCES AND 5120 02:46:38,560 --> 02:46:40,160 POLICY IMPLICATIONS, AND ALL THE 5121 02:46:40,160 --> 02:46:41,800 PEOPLE THAT PROVIDED THESE 5122 02:46:41,800 --> 02:46:44,320 COMMENTS ARE LISTED HERE. 5123 02:46:44,320 --> 02:46:46,400 WE HAD 15 COMMENTS ON RESEARCH 5124 02:46:46,400 --> 02:46:48,000 SERVICES AND SUPPORTS FOR ADULTS 5125 02:46:48,000 --> 02:46:50,560 ON THE AUTISM SPECTRUM. 5126 02:46:50,560 --> 02:46:54,080 FIVE COMMENTS ON AUGMENTIVE AND 5127 02:46:54,080 --> 02:46:54,840 ALTERNATIVE COMMUNICATION. 5128 02:46:54,840 --> 02:46:57,000 SIX COMMENTS ON INCLUSION OF 5129 02:46:57,000 --> 02:46:59,080 AUTISTIC PERSPECTIVES IN 5130 02:46:59,080 --> 02:47:00,040 RESEARCH. 5131 02:47:00,040 --> 02:47:02,640 NINE COMMENTS ONCO-OCCURRING 5132 02:47:02,640 --> 02:47:04,240 MENTAL HEALTH CONDITIONS AND 5133 02:47:04,240 --> 02:47:05,440 NEGATIVE LIFE EXPERIENCES. 5134 02:47:05,440 --> 02:47:06,720 11 COMMENTS ON ADDRESSING THE 5135 02:47:06,720 --> 02:47:08,400 NEEDS OF AUTISTIC INDIVIDUALS 5136 02:47:08,400 --> 02:47:12,200 WITH HIGH SUPPORT NEEDS. 5137 02:47:12,200 --> 02:47:14,000 FIVE COMMENTS ON CONCERN ABOUT 5138 02:47:14,000 --> 02:47:15,760 MEDICAL PRACTICES. 5139 02:47:15,760 --> 02:47:17,400 THREE COMMENTS ON INCREASING 5140 02:47:17,400 --> 02:47:21,000 AUTISM ACCEPTANCE AND REDUCING 5141 02:47:21,000 --> 02:47:21,400 STIGMA. 5142 02:47:21,400 --> 02:47:23,240 FIVE COMMENTS ON THE ROLE OF THE 5143 02:47:23,240 --> 02:47:25,240 IACC AND THE FEDERAL GOVERNMENT. 5144 02:47:25,240 --> 02:47:27,800 FOUR ON EMPLOYMENT. 5145 02:47:27,800 --> 02:47:29,120 FOUR COMMENTS ON POTENTIAL 5146 02:47:29,120 --> 02:47:31,080 CAUSES OF AUTISM. 5147 02:47:31,080 --> 02:47:33,080 AND ONE COMMENT ON WANDERING AND 5148 02:47:33,080 --> 02:47:36,120 SAFETY. 5149 02:47:36,120 --> 02:47:37,320 SO YOU CAN READ ALL OF THOSE IN 5150 02:47:37,320 --> 02:47:38,520 FULL AND I KNOW THAT THE 5151 02:47:38,520 --> 02:47:40,200 COMMITTEE RECEIVED THESE IN 5152 02:47:40,200 --> 02:47:41,840 ADVANCE AND MANY OF YOU HAVE HAD 5153 02:47:41,840 --> 02:47:44,440 TIME TO READ THROUGH THESE 5154 02:47:44,440 --> 02:47:45,120 COMMENTS. 5155 02:47:45,120 --> 02:47:47,400 SO NEXT -- OH, THERE SHOULD BE A 5156 02:47:47,400 --> 02:47:48,600 DISCUSSION SLIDE THERE, BUT WE 5157 02:47:48,600 --> 02:47:50,920 HAVE TIME FOR THE COMMITTEE TO 5158 02:47:50,920 --> 02:47:52,200 DISCUSS THESE COMMENTS. 5159 02:47:52,200 --> 02:47:53,320 AND DR. GORDON, I DON'T KNOW IF 5160 02:47:53,320 --> 02:47:54,600 YOU'D LIKE TO START WITH SOME 5161 02:47:54,600 --> 02:47:57,160 COMMENTS FOR THE DISCUSSION. 5162 02:47:57,160 --> 02:47:59,240 >>WELL, FIRST OF ALL, I WANT TO 5163 02:47:59,240 --> 02:48:01,440 THANK THE ORAL AND WRITTEN 5164 02:48:01,440 --> 02:48:02,400 COMMENTERS FOR GIVING US A LOT 5165 02:48:02,400 --> 02:48:05,480 OF FOOD FOR THOUGHT. 5166 02:48:05,480 --> 02:48:10,080 I THINK, SUE SARNTION YOU LAID R 5167 02:48:10,080 --> 02:48:10,720 TASK QUITE NICELY, WHICH IS TO 5168 02:48:10,720 --> 02:48:11,840 CONSIDER THE COMMENTS THAT WE'VE 5169 02:48:11,840 --> 02:48:14,440 HEARD TODAY, AND THINK ABOUT 5170 02:48:14,440 --> 02:48:16,080 WHETHER, AS WE REVISE THAT 5171 02:48:16,080 --> 02:48:20,040 STRATEGIC PLAN, WE WANT TO 5172 02:48:20,040 --> 02:48:22,000 INCLUDE IN IT, IF IT'S NOT 5173 02:48:22,000 --> 02:48:27,360 ADEQUATELY INCLUDED OR STRESS 5174 02:48:27,360 --> 02:48:28,000 DIFFERENTLY, DIFFERENT ELEMENTS 5175 02:48:28,000 --> 02:48:29,040 OF CONSIDERATION BASED UPON 5176 02:48:29,040 --> 02:48:31,640 THOSE COMMENTS. 5177 02:48:31,640 --> 02:48:33,920 AS ALWAYS, AS I SHOULD SAY AS 5178 02:48:33,920 --> 02:48:35,360 ALWAYS, AS WE'VE DONE FOR 5179 02:48:35,360 --> 02:48:36,280 SEVERAL YEARS NOW BASICALLY 5180 02:48:36,280 --> 02:48:37,680 SINCE I TOOK OVER, WE'RE GOING 5181 02:48:37,680 --> 02:48:39,240 TO HAVE -- WE'VE DEVOTED A 5182 02:48:39,240 --> 02:48:41,080 PERIOD OF TIME FOR THE COMMITTEE 5183 02:48:41,080 --> 02:48:42,520 TO DISCUSS ANY OF THE ISSUES 5184 02:48:42,520 --> 02:48:46,520 THAT WERE RAISED DURING THE 5185 02:48:46,520 --> 02:48:50,040 COMMENTS, AND INCLUDING THINGS 5186 02:48:50,040 --> 02:48:51,480 THAT YOU AGREE WITH OR THINGS 5187 02:48:51,480 --> 02:48:53,680 THAT YOU MAY NOT AGREE WITH. 5188 02:48:53,680 --> 02:48:55,400 THE FLOOR IS OPEN TO MEMBERS OF 5189 02:48:55,400 --> 02:49:00,800 THE COMMITTEE. FOR QUESTIONS AND 5190 02:49:00,800 --> 02:49:01,680 COMMENTS. 5191 02:49:01,680 --> 02:49:02,760 DENA, GO RIGHT AHEAD. 5192 02:49:02,760 --> 02:49:04,520 AND OTHERS, I SHOULD SAY WHILE 5193 02:49:04,520 --> 02:49:06,600 DENA GETS READY AND UNMUTES 5194 02:49:06,600 --> 02:49:07,840 HERSELF, SHOULD FEEL FREE TO 5195 02:49:07,840 --> 02:49:10,320 RAISE THEIR HANDS TO GET IN THE 5196 02:49:10,320 --> 02:49:11,000 QUEUE, IF YOU HAVE SOMETHING TO 5197 02:49:11,000 --> 02:49:12,080 OFFER. 5198 02:49:12,080 --> 02:49:13,920 AND I WOULD ASK THOSE OF YOU WHO 5199 02:49:13,920 --> 02:49:18,440 ARE SPEAKING, AGAIN, IF YOU FEEL 5200 02:49:18,440 --> 02:49:19,880 COMFORTABLE, TO TURN ON YOUR 5201 02:49:19,880 --> 02:49:22,960 VIDEOS SO THAT YOU CAN SPEAK AND 5202 02:49:22,960 --> 02:49:24,760 ALSO REMINDER THAT IF YOU WOULD 5203 02:49:24,760 --> 02:49:26,760 PREFER TO DO SO, YOU CAN SEND 5204 02:49:26,760 --> 02:49:28,960 THE COMMENTS THROUGH THE CHAT 5205 02:49:28,960 --> 02:49:31,800 FUNCTION TO THE "SEND COMMENT 5206 02:49:31,800 --> 02:49:33,360 HERE" INDIVIDUAL AND THEY WILL 5207 02:49:33,360 --> 02:49:33,880 BE READ. 5208 02:49:33,880 --> 02:49:35,200 BUT IF YOU WOULD RAISE YOUR HAND 5209 02:49:35,200 --> 02:49:36,280 SO THAT WE CAN KEEP IT IN THE 5210 02:49:36,280 --> 02:49:38,360 RIGHT ORDER, THAT WOULD BE 5211 02:49:38,360 --> 02:49:39,160 HELPFUL EVEN IF YOU SUBMITTED 5212 02:49:39,160 --> 02:49:42,040 YOUR COMMENT IN WRITING. 5213 02:49:42,040 --> 02:49:44,280 >>I'M SORRY, BUT OUR CAMERAS 5214 02:49:44,280 --> 02:49:44,720 ARE BEING BLOCKED. 5215 02:49:44,720 --> 02:49:45,840 >>OH, THEY ARE? 5216 02:49:45,840 --> 02:49:46,120 OKAY. 5217 02:49:46,120 --> 02:49:47,480 WE'LL SEE WHAT WE CAN DO ABOUT 5218 02:49:47,480 --> 02:49:48,000 THAT. 5219 02:49:48,000 --> 02:49:49,920 THE HOST CAN UNBLOCK THE CAMERAS 5220 02:49:49,920 --> 02:49:51,160 FROM THE IACC MEMBERS, THAT 5221 02:49:51,160 --> 02:49:53,760 WOULD BE HELPFUL. 5222 02:49:53,760 --> 02:49:54,120 >>THANK YOU. 5223 02:49:54,120 --> 02:49:55,720 >>GO RIGHT AHEAD. 5224 02:49:55,720 --> 02:49:58,760 >>I DIDN'T HAVE SO MUCH OF A 5225 02:49:58,760 --> 02:50:00,520 COMMENT AS I WANTED TO JUST 5226 02:50:00,520 --> 02:50:01,600 CHAMPION A COUPLE OF THE 5227 02:50:01,600 --> 02:50:03,880 COMMENTS WE GOT. 5228 02:50:03,880 --> 02:50:08,440 I AM EXTREMELY EXCITED ABOUT THE 5229 02:50:08,440 --> 02:50:09,720 SHEER AMOUNT OF FEEDBACK WE'RE 5230 02:50:09,720 --> 02:50:10,240 GETTING. 5231 02:50:10,240 --> 02:50:11,760 I THINK THIS IS UNPRECEDENTED. 5232 02:50:11,760 --> 02:50:15,440 I DID WANT TO POINT OUT THAT WE 5233 02:50:15,440 --> 02:50:16,760 SPENT A LOT OF TIME THIS MORNING 5234 02:50:16,760 --> 02:50:19,960 TALKING ABOUT EMPLOYMENT, BUT 5235 02:50:19,960 --> 02:50:21,120 THE REALITY OF IT IS THE VAST 5236 02:50:21,120 --> 02:50:22,120 MAJORITY OF PEOPLE LIVING WITH 5237 02:50:22,120 --> 02:50:23,680 AUTISM ARE NOT GOING TO BE ABLE 5238 02:50:23,680 --> 02:50:26,880 TO WORK FULL TIME. 5239 02:50:26,880 --> 02:50:28,640 SO ALL THE COMMENTS THAT CAME IN 5240 02:50:28,640 --> 02:50:30,920 AROUND HAVING A MORE MEANINGFUL 5241 02:50:30,920 --> 02:50:33,440 LIFE EXPERIENCE AFTER 18 ACROSS 5242 02:50:33,440 --> 02:50:35,760 THE AUTISM SPECTRUM WAS 5243 02:50:35,760 --> 02:50:38,800 CERTAINLY VERY IMPORTANT, AND I 5244 02:50:38,800 --> 02:50:40,000 THINK WE'RE NOT GIVING THAT 5245 02:50:40,000 --> 02:50:41,760 ENOUGH ATTENTION. 5246 02:50:41,760 --> 02:50:45,920 I DID WANT TO THANK RIEKO 5247 02:50:45,920 --> 02:50:50,080 SHEPHERD AND FINN FOR IMMIGRANT 5248 02:50:50,080 --> 02:50:50,960 NEEDS, SCHOOL TO PRISON 5249 02:50:50,960 --> 02:50:51,280 PIPELINE. 5250 02:50:51,280 --> 02:50:52,640 I THINK WE CAN TALK MORE ABOUT 5251 02:50:52,640 --> 02:50:54,120 THAT ANOTHER TIME. 5252 02:50:54,120 --> 02:50:56,240 HOMELESSNESS, AND OVERALL 5253 02:50:56,240 --> 02:50:56,680 HEALTHCARE ACCESS. 5254 02:50:56,680 --> 02:50:59,520 I LIKE SHANNON'S COMMENTS ABOUT 5255 02:50:59,520 --> 02:50:59,840 ANESTHESIA. 5256 02:50:59,840 --> 02:51:01,960 I KNOW WE THINK ABOUT ANESTHESIA 5257 02:51:01,960 --> 02:51:09,160 FREQUENTLY WHEN WE TALK ABOUT 5258 02:51:09,160 --> 02:51:10,240 ISSUES RELATED TO DENTAL CARE 5259 02:51:10,240 --> 02:51:12,560 BUT WE DON'T TALK ABOUT IT FOR 5260 02:51:12,560 --> 02:51:13,160 REPRODUCTIVE HEALTHCARE AND I 5261 02:51:13,160 --> 02:51:15,200 THINK IT COULD BE VERY HELPFUL 5262 02:51:15,200 --> 02:51:17,240 IN BOOSTING THE NUMBER OF 5263 02:51:17,240 --> 02:51:18,680 AUTISTIC WOMEN WHO WILL 5264 02:51:18,680 --> 02:51:20,560 PARTICIPATE IN REPRODUCTIVE 5265 02:51:20,560 --> 02:51:20,960 HEALTHCARE ACCESS. 5266 02:51:20,960 --> 02:51:22,080 I WANTED TO JUST POINT OUT TO 5267 02:51:22,080 --> 02:51:25,360 PEOPLE THAT IN THE ROUND ROBIN, 5268 02:51:25,360 --> 02:51:27,480 THE AGENCY FOR HEALTHCARE 5269 02:51:27,480 --> 02:51:29,960 RESEARCH AND QUALITY IS SEEKING 5270 02:51:29,960 --> 02:51:33,920 COMMENTARY ON MULTIPLE CHRONIC 5271 02:51:33,920 --> 02:51:34,920 CONDITIONS, THAT MULTIPLICITY 5272 02:51:34,920 --> 02:51:35,120 PIECE. 5273 02:51:35,120 --> 02:51:36,760 SO THOSE OF YOU WHO WROTE IN 5274 02:51:36,760 --> 02:51:38,200 ABOUT THE MULTIPLE DIMENSIONS OF 5275 02:51:38,200 --> 02:51:39,200 CO-OCCURRING CONDITIONS MAY WANT 5276 02:51:39,200 --> 02:51:42,040 TO COMMENT THERE. 5277 02:51:42,040 --> 02:51:44,240 I DO WANT TO SAY IF VIOLA 5278 02:51:44,240 --> 02:51:46,120 SANCHEZ IS LISTENING, IF SHE'LL 5279 02:51:46,120 --> 02:51:47,840 REACH OUT TO THE COMMITTEE, I'D 5280 02:51:47,840 --> 02:51:49,120 LOVE TO TALK TO HER ABOUT HER 5281 02:51:49,120 --> 02:51:49,640 SOCIAL SECURITY APPEAL. 5282 02:51:49,640 --> 02:51:51,440 AND THEN LASTLY, I JUST WANT TO 5283 02:51:51,440 --> 02:51:53,680 SAY THAT, YOU KNOW, I'M SO 5284 02:51:53,680 --> 02:51:55,440 EXCITED ABOUT HOW OUR LANGUAGE 5285 02:51:55,440 --> 02:51:56,880 IS EVOLVING. 5286 02:51:56,880 --> 02:51:59,320 WE STARTED OUT WITH TERMS IN OUR 5287 02:51:59,320 --> 02:52:01,680 HISTORY LIKE IDIOT AND MORON AND 5288 02:52:01,680 --> 02:52:04,720 MENTALLY RETARDED, AND NOW WE'RE 5289 02:52:04,720 --> 02:52:06,080 LEANING TOWARD MORE 5290 02:52:06,080 --> 02:52:07,720 COMPASSIONATE AND DIGNIFIED 5291 02:52:07,720 --> 02:52:09,120 LANGUAGE THAT'S MORE RESPECTFUL 5292 02:52:09,120 --> 02:52:11,320 OF THE HUMAN CONDITION ACROSS 5293 02:52:11,320 --> 02:52:13,600 THE SPECTRUM. 5294 02:52:13,600 --> 02:52:16,680 GIVEN THAT, YOU KNOW, WE KNOW 5295 02:52:16,680 --> 02:52:19,880 THAT EVERY SINGLE FEATURE OF 5296 02:52:19,880 --> 02:52:21,800 AUTISM PRESENTS ACROSS THE BOARD 5297 02:52:21,800 --> 02:52:24,680 IN TERMS OF THE AUTISM SPECTRUM. 5298 02:52:24,680 --> 02:52:28,640 I'M JUST REALLY HAPPY THAT WE 5299 02:52:28,640 --> 02:52:29,920 ARE REPRESENTING AND SUPPORTING 5300 02:52:29,920 --> 02:52:32,040 THE NEEDS OF THE ENTIRETY OF THE 5301 02:52:32,040 --> 02:52:33,680 AUTISM SPECTRUM. 5302 02:52:33,680 --> 02:52:37,080 EVERY TIME WE BRING UP GASTRO 5303 02:52:37,080 --> 02:52:38,360 ISSUES, MENTAL HEALTH, 5304 02:52:38,360 --> 02:52:39,680 REPRODUCTIVE HEALTHCARE, 5305 02:52:39,680 --> 02:52:41,280 DIFFICULTIES WITH PEOPLE BEING 5306 02:52:41,280 --> 02:52:42,680 EMPLOYED, YOU KNOW, THE POINT 5307 02:52:42,680 --> 02:52:45,080 THAT PAUL MADE ABOUT A FOURTH OF 5308 02:52:45,080 --> 02:52:46,520 TEENAGERS LIVING IN HOMES BELOW 5309 02:52:46,520 --> 02:52:48,520 THE POVERTY LINE REFLECTS THE 5310 02:52:48,520 --> 02:52:51,560 LACK OF SERVICES THAT FORCE 5311 02:52:51,560 --> 02:52:54,920 WOMEN AND OTHER PROVIDERS OUT OF 5312 02:52:54,920 --> 02:52:56,960 THE WORKFORCE. 5313 02:52:56,960 --> 02:52:58,480 SO I JUST -- I'M REALLY HAPPY TO 5314 02:52:58,480 --> 02:53:00,640 BE PART OF THIS COMMUNITY, AND I 5315 02:53:00,640 --> 02:53:02,880 HOPE WE CAN CONTINUE TO WORK 5316 02:53:02,880 --> 02:53:03,520 COLLABORATIVELY TO RESOLVE SOME 5317 02:53:03,520 --> 02:53:06,480 OF THESE ISSUES. 5318 02:53:06,480 --> 02:53:09,960 >>THANK YOU, DENA. 5319 02:53:09,960 --> 02:53:13,280 >>I SEE JALYNN HAS HER HAND UP 5320 02:53:13,280 --> 02:53:13,600 NEXT. 5321 02:53:13,600 --> 02:53:14,920 GO AHEAD, JALYNN. 5322 02:53:14,920 --> 02:53:18,520 I SEE MORENICA, SCOTT AND 5323 02:53:18,520 --> 02:53:19,640 IVANOVA AFTERWARDS. 5324 02:53:19,640 --> 02:53:20,880 GO AHEAD, JALYNN. 5325 02:53:20,880 --> 02:53:21,320 >>THANK YOU. 5326 02:53:21,320 --> 02:53:22,720 I REALLY APPRECIATED AMY'S 5327 02:53:22,720 --> 02:53:23,560 COMMENTS. 5328 02:53:23,560 --> 02:53:24,720 THIS IS AN AREA THAT WE HAVE 5329 02:53:24,720 --> 02:53:26,880 BECOME MORE AND MORE FAMILIAR 5330 02:53:26,880 --> 02:53:28,640 WITH ALL ALONG THE WAY. 5331 02:53:28,640 --> 02:53:32,200 SOMETIMES REFERRED TO AS EXTREME 5332 02:53:32,200 --> 02:53:35,320 AUTISM, AND WE'VE BEEN MADE VERY 5333 02:53:35,320 --> 02:53:38,720 MUCH AWARE OF VERY FEW PLACES OR 5334 02:53:38,720 --> 02:53:40,160 LOCATIONS WHERE FAMILIES CAN 5335 02:53:40,160 --> 02:53:41,920 TURN FOR THIS WILL TYPE OF 5336 02:53:41,920 --> 02:53:43,360 HEALTH, AND JUST LAST NIGHT, I 5337 02:53:43,360 --> 02:53:46,520 WAS REMINDED BY A SISTER-IN-LAW 5338 02:53:46,520 --> 02:53:49,840 OF A WOMAN WHO HAD BEEN VERY 5339 02:53:49,840 --> 02:53:51,480 CAPABLE, WHO WAS ON THE SPECTRUM 5340 02:53:51,480 --> 02:53:54,120 WHO HAD WORKED IN A COFFEE SHOP 5341 02:53:54,120 --> 02:53:55,800 THAT HAD A VERY PRODUCTIVE LIFE. 5342 02:53:55,800 --> 02:53:57,320 A COUPLE OF THINGS HAPPENED 5343 02:53:57,320 --> 02:54:01,120 WITHIN HER FAMILY, AND SHE 5344 02:54:01,120 --> 02:54:04,080 REGRESSED AND IS 45 NOW, AND IS 5345 02:54:04,080 --> 02:54:07,040 IN A MEDICAL CARE SITUATION 5346 02:54:07,040 --> 02:54:08,440 BECAUSE THE FAMILY CAN'T HAVE 5347 02:54:08,440 --> 02:54:09,680 HER AT HOME BECAUSE THEY CAN'T 5348 02:54:09,680 --> 02:54:10,920 REGULATE ALL THE MEDS THAT SHE 5349 02:54:10,920 --> 02:54:13,520 NEEDS. 5350 02:54:13,520 --> 02:54:15,400 BUT THE PROGRAM THAT SHE'S IN IS 5351 02:54:15,400 --> 02:54:18,120 SO VERY INAPPROPRIATE FOR HER 5352 02:54:18,120 --> 02:54:20,320 BECAUSE IF THEY ADMINISTER THE 5353 02:54:20,320 --> 02:54:22,040 DRUGS AND MAYBE HAVE PHYSICAL 5354 02:54:22,040 --> 02:54:24,240 EXERCISE ONCE A WEEK, THAT IS 5355 02:54:24,240 --> 02:54:24,880 SUFFICIENT. 5356 02:54:24,880 --> 02:54:27,360 BUT IT'S NOT SUFFICIENT ENOUGH 5357 02:54:27,360 --> 02:54:28,720 FOR HER MENTALLY TO GET BACK TO 5358 02:54:28,720 --> 02:54:33,120 WHERE SHE WAS TO REPRODUCTIVE -- 5359 02:54:33,120 --> 02:54:33,760 AND TO WORK. 5360 02:54:33,760 --> 02:54:35,280 AND I'M NOT SEEING PLACES AND 5361 02:54:35,280 --> 02:54:36,200 I'M NOT UNDERSTANDING THAT THERE 5362 02:54:36,200 --> 02:54:38,680 ARE MANY PLACES THAT PEOPLE CAN 5363 02:54:38,680 --> 02:54:42,320 GO TO HAVE THIS REMEDIATION, 5364 02:54:42,320 --> 02:54:43,960 PERHAPS, MAYBE IT WOULD BE MORE 5365 02:54:43,960 --> 02:54:48,120 LONG TERM. 5366 02:54:48,120 --> 02:54:49,440 BUT NO ONE WANTS TO SEE 5367 02:54:49,440 --> 02:54:50,640 INSTITUTIONS, BUT I DON'T THINK 5368 02:54:50,640 --> 02:54:52,200 ANYONE WANTS TO SEE NEGLECT 5369 02:54:52,200 --> 02:54:55,480 EITHER, OR TO SEE HUMAN 5370 02:54:55,480 --> 02:54:56,560 POTENTIAL NOT REALIZED. 5371 02:54:56,560 --> 02:54:58,800 AND HOW DO WE COME TO THAT. 5372 02:54:58,800 --> 02:55:00,320 AND I THINK IT'S A HEALTHY 5373 02:55:00,320 --> 02:55:01,960 DEBATE THAT WE NEED TO HAVE. 5374 02:55:01,960 --> 02:55:07,120 AND IT RANGES FROM THERE TO LOW 5375 02:55:07,120 --> 02:55:09,080 SUPPORT NEEDS, BUT LOW SUPPORT 5376 02:55:09,080 --> 02:55:10,520 NEEDS DOESN'T MEAN NO SUPPORT 5377 02:55:10,520 --> 02:55:13,440 NEEDS. 5378 02:55:13,440 --> 02:55:15,280 SOL WE'VE GOT A LOT OF BALANCING 5379 02:55:15,280 --> 02:55:16,960 TO DO THERE, AND I WOULD LOVE TO 5380 02:55:16,960 --> 02:55:19,360 SEE THAT TYPE OF CONVERSATION 5381 02:55:19,360 --> 02:55:22,120 COMING IN, HOW DO WE ENCOURAGE 5382 02:55:22,120 --> 02:55:24,320 WHAT IS IT THAT IS NEEDING TO BE 5383 02:55:24,320 --> 02:55:27,440 DONE, BECAUSE THERE ARE HUNDREDS 5384 02:55:27,440 --> 02:55:31,640 OF FAMILIES THAT ARE PLEADING, 5385 02:55:31,640 --> 02:55:33,640 CRYING, NEEDING TO MOVE ON WITH 5386 02:55:33,640 --> 02:55:34,720 THEIR LIVES, WITH THEIR 5387 02:55:34,720 --> 02:55:36,400 CHILDREN'S LIVES, WITH THEIR 5388 02:55:36,400 --> 02:55:42,280 GRANDCHILDREN'S LIVES AND 5389 02:55:42,280 --> 02:55:43,480 THEY'RE UNABLE TO DO SO. 5390 02:55:43,480 --> 02:55:43,760 THANK YOU. 5391 02:55:43,760 --> 02:55:44,720 >>THANK YOU, JALYNN. 5392 02:55:44,720 --> 02:55:49,640 NEXT WE HAVE MORENIKE. 5393 02:55:49,640 --> 02:55:51,120 DO YOU HAVE A COMMENT FOR US? 5394 02:55:51,120 --> 02:55:57,320 >>HI THERE. 5395 02:55:57,320 --> 02:55:58,320 THEY ASKED ME TO READ THEIR 5396 02:55:58,320 --> 02:55:58,760 COMMENT FOR THEM. 5397 02:55:58,760 --> 02:55:59,120 >>THANK YOU. 5398 02:55:59,120 --> 02:56:01,080 >>I LACK THE VOCABULARY 5399 02:56:01,080 --> 02:56:03,400 NECESSARY TO ADEQUATELY CONVEY 5400 02:56:03,400 --> 02:56:05,560 HOW EMOTIONALLY DRAINING IT IS 5401 02:56:05,560 --> 02:56:08,360 TO HAVE TO FEND OFF THE 5402 02:56:08,360 --> 02:56:09,560 MISCHARACTERIZATIONS AND 5403 02:56:09,560 --> 02:56:11,320 DISTORTIONS THAT THE NUMBERS OF 5404 02:56:11,320 --> 02:56:14,800 THE NATIONAL COUNCIL FOR SEVERE 5405 02:56:14,800 --> 02:56:17,440 AUTISM, AMY LUTZ, JILL, ALISON 5406 02:56:17,440 --> 02:56:18,760 AND OTHERS, EVERY TIME THERE IS 5407 02:56:18,760 --> 02:56:20,720 AN IACC MEETING, AS WELL AS 5408 02:56:20,720 --> 02:56:25,040 THEIR SOCIAL MEDIA GASLIGHTING. 5409 02:56:25,040 --> 02:56:26,880 HISTORYONICSS AND FALSE NEWS 5410 02:56:26,880 --> 02:56:28,920 ASIDE, LET'S NOT PRETEND THIS IS 5411 02:56:28,920 --> 02:56:31,520 A WAR BETWEEN AUTISTIC IACC 5412 02:56:31,520 --> 02:56:32,840 MEMBERS AND EVERYONE ELSE. 5413 02:56:32,840 --> 02:56:35,120 WE WISH FOR ALL PEOPLE ON THE 5414 02:56:35,120 --> 02:56:37,120 SPECTRUM TO BE DISCUSSED, 5415 02:56:37,120 --> 02:56:39,960 ADDRESSED AND DESCRIBED IN A 5416 02:56:39,960 --> 02:56:41,560 RESPECTFUL, NON-STIGMATIZING 5417 02:56:41,560 --> 02:56:43,240 MANNER, AND TO HAVE THE 5418 02:56:43,240 --> 02:56:44,280 PERSONALIZED SUPPORT AND 5419 02:56:44,280 --> 02:56:47,440 RESOURCES THAT ARE NEEDED 5420 02:56:47,440 --> 02:56:48,520 REGARDLESS OF THEIR LEVEL OF 5421 02:56:48,520 --> 02:56:49,320 FUNCTIONING. 5422 02:56:49,320 --> 02:56:50,960 LET'S DISSECT JUST ONE OF THE 5423 02:56:50,960 --> 02:56:52,720 TERMS THAT HAS BEEN DESCRIBED AS 5424 02:56:52,720 --> 02:56:54,360 BASIC, ACCURATE AND MEANINGFUL 5425 02:56:54,360 --> 02:56:57,480 LANGUAGE THAT IS ALLEGEDLY 5426 02:56:57,480 --> 02:56:58,480 NECESSARY AND PREFERABLE OVER 5427 02:56:58,480 --> 02:57:02,720 NEUTRAL LANGUAGE. 5428 02:57:02,720 --> 02:57:05,120 HOW ABOUT RISK FOR AUTISM? 5429 02:57:05,120 --> 02:57:07,480 WHY WOULD IT BE MORE RESPECTFUL 5430 02:57:07,480 --> 02:57:08,920 TO USE LIKELIHOOD OF AUTISM 5431 02:57:08,920 --> 02:57:10,400 RATHER THAN RISK? 5432 02:57:10,400 --> 02:57:11,960 THE FIRST KNOWN USE OF THE WORD 5433 02:57:11,960 --> 02:57:14,200 RISK WAS IN THE 1600s. 5434 02:57:14,200 --> 02:57:15,360 IT WAS SYNONYMOUS WITH HAZARD 5435 02:57:15,360 --> 02:57:17,240 AND WAS INTENDED TO REFER TO 5436 02:57:17,240 --> 02:57:18,120 SOMETHING BEING A SOURCE OF 5437 02:57:18,120 --> 02:57:21,760 HARM. 5438 02:57:21,760 --> 02:57:23,040 RISK ACCORDING TO CAMBRIDGE 5439 02:57:23,040 --> 02:57:24,840 MEANS THE POSSIBILITY OF 5440 02:57:24,840 --> 02:57:25,640 SOMETHING BAD HAPPENING, 5441 02:57:25,640 --> 02:57:27,680 SOMETHING BAD THAT MIGHT HAPPEN, 5442 02:57:27,680 --> 02:57:29,160 TO DO SOMETHING, ALTHOUGH THERE 5443 02:57:29,160 --> 02:57:32,640 IS A CHANCE OF A BAD RESULT 5444 02:57:32,640 --> 02:57:34,600 CAUSING SOMETHING TO BE IN A 5445 02:57:34,600 --> 02:57:35,360 DANGEROUS SITUATION. 5446 02:57:35,360 --> 02:57:38,920 DANGER OR THE POSSIBILITY OF 5447 02:57:38,920 --> 02:57:40,200 DANGER DEFEAT OUR LOSS, OR TO 5448 02:57:40,200 --> 02:57:41,320 GET INTO A SITUATION THAT MIGHT 5449 02:57:41,320 --> 02:57:44,600 HAVE A BAD RESULT. 5450 02:57:44,600 --> 02:57:46,480 RISK -- THE SOCIETY FOR RISK 5451 02:57:46,480 --> 02:57:49,080 ANALYSIS SAYS THAT RISK INVOLVES 5452 02:57:49,080 --> 02:57:50,360 UNCERTAINTY ABOUT THE EFFECTS, 5453 02:57:50,360 --> 02:57:52,520 IMPLICATIONS OF INACTIVITY WITH 5454 02:57:52,520 --> 02:57:54,160 RESPECT TO SOMETHING THAT HUMANS 5455 02:57:54,160 --> 02:57:56,680 VALUE, SUCH AS HEALTH, 5456 02:57:56,680 --> 02:57:57,880 WELL-BEING, WEALTH, PROPERTY, OR 5457 02:57:57,880 --> 02:58:00,320 THE ENVIRONMENT. 5458 02:58:00,320 --> 02:58:02,280 OFTEN FOCUSING ON NEGATIVE, 5459 02:58:02,280 --> 02:58:04,720 UNDESIRABLE CONSEQUENCES. 5460 02:58:04,720 --> 02:58:06,160 OXFORD UNIVERSITY DESCRIBES RISK 5461 02:58:06,160 --> 02:58:08,800 AS THE POSSIBILITY OF LOSS, 5462 02:58:08,800 --> 02:58:11,120 INJURY, OR OTHER ADVERSE OR 5463 02:58:11,120 --> 02:58:12,880 UNWELCOME CIRCUMSTANCES. 5464 02:58:12,880 --> 02:58:15,280 IT WASN'T THAT LONG AGO THAT THE 5465 02:58:15,280 --> 02:58:16,960 BASIC, ACCURATE AND MEANINGFUL 5466 02:58:16,960 --> 02:58:18,920 TERM FOR CHILDREN LIKE MINE WAS 5467 02:58:18,920 --> 02:58:20,120 THE R WORD. 5468 02:58:20,120 --> 02:58:23,960 IT WASN'T THAT LONG AGO THAT THE 5469 02:58:23,960 --> 02:58:25,440 BASIC ACCURATE AND MEANINGFUL 5470 02:58:25,440 --> 02:58:26,920 TERM FOR PEOPLE WHO LOOKED LIKE 5471 02:58:26,920 --> 02:58:28,000 ME WAS THE "N" WORD. 5472 02:58:28,000 --> 02:58:30,080 WHAT ABOUT BASIC ACCURATE AND 5473 02:58:30,080 --> 02:58:32,760 MEANINGFUL TERMINOLOGY SUCH AS 5474 02:58:32,760 --> 02:58:34,160 COLONIZERS DECIDING ZIMBABWE 5475 02:58:34,160 --> 02:58:37,120 SHOULD BE CALLED ROW DESHA OR 5476 02:58:37,120 --> 02:58:39,760 MUMBAI SHOULD BE CALLED BOMBAY? 5477 02:58:39,760 --> 02:58:41,080 ACCURATE TERMINOLOGY FOR PEOPLE 5478 02:58:41,080 --> 02:58:46,360 WHO ARE REDHEAD THS, FRECKLES AD 5479 02:58:46,360 --> 02:58:47,680 OLYMPIC ATHLETES ACCORDING TO 5480 02:58:47,680 --> 02:58:48,760 YOUR LOGIC IS MUTANT. 5481 02:58:48,760 --> 02:58:50,400 RED HAIR IN HUMANS IS DUE TO 5482 02:58:50,400 --> 02:58:52,960 CERTAIN LOSS OF FUNCTION 5483 02:58:52,960 --> 02:58:55,360 MUTATIONS OF ONE OF THE PEPTIDE 5484 02:58:55,360 --> 02:59:02,080 PRODUCTS OF THE POMC GENE, THE 5485 02:59:02,080 --> 02:59:02,680 MELOCORTIN1 RECEPTOR. 5486 02:59:02,680 --> 02:59:03,760 FREK ELSE ARE ASSOCIATED WITH 5487 02:59:03,760 --> 02:59:07,720 VARIANT OF A GENE CALLED MC1R. 5488 02:59:07,720 --> 02:59:08,640 ENDURANCE ATHLETES GENERALLY 5489 02:59:08,640 --> 02:59:10,840 HAVE A MUTATION IN THE 5490 02:59:10,840 --> 02:59:14,000 ACTN3 GENE. 5491 02:59:14,000 --> 02:59:15,360 YOU DON'T KNOW WHAT I OR ANY OF 5492 02:59:15,360 --> 02:59:17,720 THE AUTISTIC MEMBERS OF THE IACC 5493 02:59:17,720 --> 02:59:18,720 KNOW HAVE BEEN THROUGH OR WHAT 5494 02:59:18,720 --> 02:59:22,480 OUR FAMILIES HAVE BEEN THROUGH. 5495 02:59:22,480 --> 02:59:25,720 PICA, ENLOBEMENT, INCONTINENCE, 5496 02:59:25,720 --> 02:59:27,120 AGGRESSION, COMMUNICATION 5497 02:59:27,120 --> 02:59:29,080 CHALLENGES, GROUP HOMES. 5498 02:59:29,080 --> 02:59:31,920 YOU THINK THAT JUST BECAUSE YOU 5499 02:59:31,920 --> 02:59:34,440 CHOOSE TO -- NOT TO DISRESPECT 5500 02:59:34,440 --> 02:59:37,560 OUR LOVED ONES AND CRY WOE IS 5501 02:59:37,560 --> 02:59:38,760 ME, THAT YOU ARE THE ONLY PEOPLE 5502 02:59:38,760 --> 02:59:41,080 WHO HAVE EXPERIENCED SUCH 5503 02:59:41,080 --> 02:59:41,320 THINGS. 5504 02:59:41,320 --> 02:59:43,600 IT WOULD BE HILARIOUS IF IT 5505 02:59:43,600 --> 02:59:46,520 WASN'T SO MYOPIC, PRIVILEGED AND 5506 02:59:46,520 --> 02:59:48,200 INACCURATE. 5507 02:59:48,200 --> 02:59:50,200 >>THANK YOU SO MUCH, STEVEN, 5508 02:59:50,200 --> 02:59:54,560 FOR READING THOSE COMMENTS ON 5509 02:59:54,560 --> 03:00:00,680 BEHALF OF MORNIKE. 5510 03:00:00,680 --> 03:00:01,960 SCOTT, DO YOU HAVE A COMMENT? 5511 03:00:01,960 --> 03:00:05,400 >>THANK YOU, DR. DANIELS. 5512 03:00:05,400 --> 03:00:09,160 SO I WANT TO SAY FIRST THAT I 5513 03:00:09,160 --> 03:00:10,600 APPRECIATE THE COMMENTS ON 5514 03:00:10,600 --> 03:00:12,120 EMPLOYMENT, QUALITY OF LIFE, 5515 03:00:12,120 --> 03:00:14,920 HEALTH AND WELLNESS AND FOR 5516 03:00:14,920 --> 03:00:15,880 INSTANCE ON HOMELESSNESS. 5517 03:00:15,880 --> 03:00:19,560 WE HAD A PRIOR WORKSHOP ON THE 5518 03:00:19,560 --> 03:00:20,920 LAST ITERATION OF THE IACC ON 5519 03:00:20,920 --> 03:00:22,560 HOUSING HOMELESSNESS RELATED 5520 03:00:22,560 --> 03:00:22,800 ISSUES. 5521 03:00:22,800 --> 03:00:24,560 I DON'T KNOW IF THAT'S SOMETHING 5522 03:00:24,560 --> 03:00:26,280 THAT COULD BE LOOKED AT, WHAT 5523 03:00:26,280 --> 03:00:28,080 WAS DONE BEFORE AND FOR FUTURE 5524 03:00:28,080 --> 03:00:30,200 RESOURCES OR FUTURE MEETINGS. 5525 03:00:30,200 --> 03:00:31,280 I KNOW WE'VE SEEN INCREASING 5526 03:00:31,280 --> 03:00:33,280 RESEARCH STUDIES IN THAT FOCUS, 5527 03:00:33,280 --> 03:00:34,160 ESPECIALLY FROM INTERNATIONALLY 5528 03:00:34,160 --> 03:00:36,400 IN THE U.K., FOR INSTANCE, 5529 03:00:36,400 --> 03:00:37,480 UNITED KINGDOM ON HOMELESSNESS, 5530 03:00:37,480 --> 03:00:38,440 AND THE IMPACT, RIGHT? 5531 03:00:38,440 --> 03:00:39,880 BECAUSE YOU NEED HOUSING TO BE 5532 03:00:39,880 --> 03:00:40,800 ABLE TO HAVE EMPLOYMENT, TO HAVE 5533 03:00:40,800 --> 03:00:43,240 COMMUNITY LIVING OPPORTUNITIES, 5534 03:00:43,240 --> 03:00:45,040 TO THRIVE IN LIFE AND HAVE A 5535 03:00:45,040 --> 03:00:46,440 HIGH QUALITY OF LIFE AND IT'S 5536 03:00:46,440 --> 03:00:48,240 ONE OF OUR FOCUSES ON THE 5537 03:00:48,240 --> 03:00:49,280 EMPLOYMENT RELATED SUPPORTS TEAM 5538 03:00:49,280 --> 03:00:51,880 THAT I'M ON AT ODEP. 5539 03:00:51,880 --> 03:00:55,480 SO I ALSO HAVE -- WHILE I 5540 03:00:55,480 --> 03:00:56,720 APPRECIATE A LOT OF THESE 5541 03:00:56,720 --> 03:01:00,480 COMMENTS IN TERMS OF SHOWING A 5542 03:01:00,480 --> 03:01:02,120 LOT OF THE CHALLENGES FOLKS HAVE 5543 03:01:02,120 --> 03:01:03,200 AND SUCCESSES AND IT'S HELPED 5544 03:01:03,200 --> 03:01:05,280 INFORM, I THINK, WHAT WE'RE 5545 03:01:05,280 --> 03:01:07,680 DOING WITH ACTIVITIES FOR THE 5546 03:01:07,680 --> 03:01:09,240 IACC IN THE STRATEGIC PLAN, I DO 5547 03:01:09,240 --> 03:01:10,400 HAVE SOME CONCERNS ABOUT SOME OF 5548 03:01:10,400 --> 03:01:14,120 THE RHETORIC IN SOME OF THE 5549 03:01:14,120 --> 03:01:15,240 COMMENT AS FAR AS ON OUR USE OF, 5550 03:01:15,240 --> 03:01:17,280 IN THE PLAN, THE COMMITTEE'S USE 5551 03:01:17,280 --> 03:01:20,120 IN THE PLAN OF INCLUSIVE 5552 03:01:20,120 --> 03:01:20,800 LANGUAGE. 5553 03:01:20,800 --> 03:01:22,280 I'D LIKE TO EMPHASIZE THERE ARE 5554 03:01:22,280 --> 03:01:24,320 TWO REASONS THAT -- JUST FROM MY 5555 03:01:24,320 --> 03:01:25,440 PERSPECTIVE, AT LEAST, THAT 5556 03:01:25,440 --> 03:01:29,320 SHOULD UNDERGIRD OUR USE OF 5557 03:01:29,320 --> 03:01:30,840 INCLUSIVE LANGUAGE, ONE OF WHICH 5558 03:01:30,840 --> 03:01:32,720 IS AN EVIDENCE-BASED PRACTICE 5559 03:01:32,720 --> 03:01:33,320 FROM THE RESEARCH LITERATURE. 5560 03:01:33,320 --> 03:01:35,200 WE HAVE DATA THAT SHOWS THAT IT 5561 03:01:35,200 --> 03:01:38,360 IS BENEFICIAL TO FOLKS TO USE 5562 03:01:38,360 --> 03:01:40,760 INCLUSIVE, UNBIASED, RESPECTFUL, 5563 03:01:40,760 --> 03:01:42,200 STRENGTH-BASED LANGUAGE, THAT 5564 03:01:42,200 --> 03:01:43,920 IT'S VERY EMPOWERING FOR FOLKS, 5565 03:01:43,920 --> 03:01:45,840 AND TO NOT USE IT, TO USE 5566 03:01:45,840 --> 03:01:46,720 STIGMATIZING LANGUAGE CAN CAUSE 5567 03:01:46,720 --> 03:01:47,400 HARM TO FOLKS. 5568 03:01:47,400 --> 03:01:49,400 AND WE HAVE THAT FROM PERSONAL 5569 03:01:49,400 --> 03:01:50,240 PERSPECTIVES OF FOLKS WITH 5570 03:01:50,240 --> 03:01:52,240 DISABILITIES, INCLUDING AUTISTIC 5571 03:01:52,240 --> 03:01:53,680 PEOPLE, AND OTHER STUDIES THAT 5572 03:01:53,680 --> 03:01:55,760 HAVE LOOKED AT LANGUAGE RHETORIC 5573 03:01:55,760 --> 03:01:59,280 AND BOTH -- AND WRITTEN SYMBOLS, 5574 03:01:59,280 --> 03:02:01,600 VISUAL SYMBOLS, THERE ARE VISUAL 5575 03:02:01,600 --> 03:02:02,480 SYMBOLS INCLUDING FOR THE PUZZLE 5576 03:02:02,480 --> 03:02:04,480 PIECE WHERE THERE ARE PIECES OF 5577 03:02:04,480 --> 03:02:06,200 FOLKS' HEADS MISSING AND THINGS 5578 03:02:06,200 --> 03:02:07,760 LIKE THAT THAT HAVE CAUSED HARM 5579 03:02:07,760 --> 03:02:09,200 FOR PEOPLE INCLUDING 5580 03:02:09,200 --> 03:02:12,840 NON-AUTISTIC PEOPLE WHEN THEY 5581 03:02:12,840 --> 03:02:14,160 SEE STIGMATIZING VISUAL SYMBOLS 5582 03:02:14,160 --> 03:02:17,000 AND SEE AND HEAR STIGMATIZING 5583 03:02:17,000 --> 03:02:18,120 LANGUAGE, IT MAKES THEM THINK 5584 03:02:18,120 --> 03:02:18,920 DIFFERENTLY ABOUT AUTISTIC 5585 03:02:18,920 --> 03:02:19,640 PEOPLE TOO. 5586 03:02:19,640 --> 03:02:21,200 IT MAKES THEM THINK IN TERMS OF 5587 03:02:21,200 --> 03:02:22,760 THAT WE'RE NOT FULLY HUMAN, THAT 5588 03:02:22,760 --> 03:02:24,480 WE SHOULD NOT BE FULLY INCLUDED. 5589 03:02:24,480 --> 03:02:25,440 SO I THINK THERE ARE REASONS 5590 03:02:25,440 --> 03:02:26,880 FROM THE RESEARCH LITERATURE 5591 03:02:26,880 --> 03:02:28,960 THAT SUPPORT OUR WORK IN THIS 5592 03:02:28,960 --> 03:02:31,520 AREA AS FAR AS TO HAVE MORE 5593 03:02:31,520 --> 03:02:36,120 MODERNIZATION, I WOULD SAY, OF 5594 03:02:36,120 --> 03:02:39,440 INCLUSIVE, UNBIASED LANGUAGE 5595 03:02:39,440 --> 03:02:43,720 THAT IS RESPECTFUL AND STILL 5596 03:02:43,720 --> 03:02:44,920 FOCUSING ON THE BARRIERS AND 5597 03:02:44,920 --> 03:02:47,880 CHALLENGES THAT FOLKS WITH 5598 03:02:47,880 --> 03:02:49,400 DIFFERENT SUPPORT CHALLENGES MAY 5599 03:02:49,400 --> 03:02:49,920 HAVE IN LIFE. 5600 03:02:49,920 --> 03:02:53,040 I ALSO WANT TO TYPE BACK TO OUR 5601 03:02:53,040 --> 03:02:55,520 FOCUS ON DIVERSITY, EQUITY, IN 5602 03:02:55,520 --> 03:02:58,720 THE FEDERAL GOVERNMENT, WE HAVE 5603 03:02:58,720 --> 03:03:00,120 PRIORITIES AND THAT INCLUDES 5604 03:03:00,120 --> 03:03:01,000 LANGUAGE USE TOO IN TERMS OF 5605 03:03:01,000 --> 03:03:02,240 WHAT WE DO WITH THE PLAN, WHAT 5606 03:03:02,240 --> 03:03:05,880 WE'RE DOING AT AGENCIES ACROSS 5607 03:03:05,880 --> 03:03:07,600 THE FEDERAL GOVERNMENT FOR FOLKS 5608 03:03:07,600 --> 03:03:09,080 FROM DIVERSE AND 5609 03:03:09,080 --> 03:03:10,080 UNDERREPRESENTED BACKGROUNDS SO 5610 03:03:10,080 --> 03:03:12,040 LANGUAGE IS VERY MEANINGFUL AND 5611 03:03:12,040 --> 03:03:13,440 THE DOESN'T WE DEVELOP IS 5612 03:03:13,440 --> 03:03:14,720 MEANINGFUL AND HOW WE 5613 03:03:14,720 --> 03:03:15,800 CHARACTERIZE FOLKS WE SHOULD 5614 03:03:15,800 --> 03:03:17,440 THINK VERY CAREFULLY AND 5615 03:03:17,440 --> 03:03:19,080 STRATEGICALLY AND ALIGN WITH THE 5616 03:03:19,080 --> 03:03:20,440 EVOLUTION ON WHAT WE KNOW NOW 5617 03:03:20,440 --> 03:03:21,840 FROM AUTISM THAT WE DIDN'T KNOW 5618 03:03:21,840 --> 03:03:23,080 15 OR 20 YEARS AGO, RIGHT? 5619 03:03:23,080 --> 03:03:25,040 AND THAT WE KNOW ESPECIALLY MORE 5620 03:03:25,040 --> 03:03:28,880 FROM AUTISTIC PEOPLE OURSELVES, 5621 03:03:28,880 --> 03:03:30,440 THAT HAVE VALUED PERSPECTIVE IN 5622 03:03:30,440 --> 03:03:32,240 TERMS OF RHETORIC, LANGUAGE AND 5623 03:03:32,240 --> 03:03:33,040 CONTENT WE SHOULD DO. 5624 03:03:33,040 --> 03:03:34,880 SO I THINK WE'VE GONE IN A 5625 03:03:34,880 --> 03:03:36,200 STRONG DIRECTION IN TERMS OF THE 5626 03:03:36,200 --> 03:03:38,200 INCLUSIVE LANGUAGE, THE SUPPORT 5627 03:03:38,200 --> 03:03:39,480 FOR DEIA IN THE STRATEGIC PLAN, 5628 03:03:39,480 --> 03:03:41,280 SO I THINK IT'S JUST THE 5629 03:03:41,280 --> 03:03:42,080 PRIORITIES IN THE FEDERAL 5630 03:03:42,080 --> 03:03:43,080 GOVERNMENT AND THE 5631 03:03:43,080 --> 03:03:44,080 EVIDENCE-BASED PRACTICES FOR 5632 03:03:44,080 --> 03:03:44,920 INCLUSIVE LANGUAGE IS SOMETHING 5633 03:03:44,920 --> 03:03:47,240 THAT WE SHOULD REMEMBER IS 5634 03:03:47,240 --> 03:03:48,520 REASONING FOR THE USE OF 5635 03:03:48,520 --> 03:03:50,080 LANGUAGE IN THE MANNER IT IS IN 5636 03:03:50,080 --> 03:03:50,720 THE DRAFT PLAN. 5637 03:03:50,720 --> 03:03:52,400 THANK YOU. 5638 03:03:52,400 --> 03:03:53,200 >>THANK YOU, SCOTT. 5639 03:03:53,200 --> 03:03:55,880 AND I WOULD LIKE TO LET -- I'VE 5640 03:03:55,880 --> 03:03:57,840 GOT FIVE HANDS UP, EVERY PERSON 5641 03:03:57,840 --> 03:03:58,400 HAVE A COMMENT. 5642 03:03:58,400 --> 03:04:00,320 IF YOU CAN KEEP YOUR COMMENTS A 5643 03:04:00,320 --> 03:04:01,000 LITTLE SHORTER, THAT MIGHT HELP 5644 03:04:01,000 --> 03:04:01,600 US GET THROUGH IT. 5645 03:04:01,600 --> 03:04:03,600 I THINK WE HAVE ENOUGH TIME IN 5646 03:04:03,600 --> 03:04:05,440 THE SCHEDULE OVERALL TO BE ABLE 5647 03:04:05,440 --> 03:04:06,160 TO DO THAT. 5648 03:04:06,160 --> 03:04:07,440 SO IVANOVA, IF YOU COULD GO 5649 03:04:07,440 --> 03:04:17,560 AHEAD. 5650 03:04:23,960 --> 03:04:30,520 >>[INAUDIBLE] 5651 03:04:30,520 --> 03:04:32,440 >>YOUR AUDIO IS REALLY POOR, 5652 03:04:32,440 --> 03:04:32,800 IVANOVA. 5653 03:04:32,800 --> 03:04:33,720 WE'RE NOT UNDERSTANDING. 5654 03:04:33,720 --> 03:04:34,760 >>I THINK IT MAY BE A PROBLEM 5655 03:04:34,760 --> 03:04:36,440 WITH YOUR INTERNET CONNECTION. 5656 03:04:36,440 --> 03:04:39,400 >>NOW IT'S GOOD. 5657 03:04:39,400 --> 03:04:40,640 >>CAN YOU HEAR ME? 5658 03:04:40,640 --> 03:04:41,880 >>YES. 5659 03:04:41,880 --> 03:04:44,840 >>CAN YOU TRY IT AGAIN? 5660 03:04:44,840 --> 03:04:50,760 >>THIS IS IVANOVA SMITH. 5661 03:04:50,760 --> 03:04:54,720 AND MY COMMENT IS I WANT TO 5662 03:04:54,720 --> 03:04:56,560 THANK THOSE WHO GAVE COMMENTS 5663 03:04:56,560 --> 03:04:59,680 ABOUT HOW IT'S IMPORTANT TO HAVE 5664 03:04:59,680 --> 03:05:01,960 FULL ACCESS TO THE COMMUNITY, I 5665 03:05:01,960 --> 03:05:02,800 THINK THAT'S REALLY IMPORTANT, 5666 03:05:02,800 --> 03:05:08,440 I'M THANKFUL THAT SEVERAL 5667 03:05:08,440 --> 03:05:10,080 AUTISTIC COMMENTERS AND MORE 5668 03:05:10,080 --> 03:05:11,520 PEOPLE SPEAKING, WE WANT TO MAKE 5669 03:05:11,520 --> 03:05:14,440 SURE THAT WE'RE ALL IN THE 5670 03:05:14,440 --> 03:05:16,280 COMMUNITY AND UNIVERSAL DESIGN 5671 03:05:16,280 --> 03:05:17,280 PRINCIPLES IS HOW WE'LL GET 5672 03:05:17,280 --> 03:05:19,440 THERE. 5673 03:05:19,440 --> 03:05:23,160 I FEEL, AS WE HAVE THE MINDSET 5674 03:05:23,160 --> 03:05:25,920 WITH THE -- EFFECT WHERE WE HAVE 5675 03:05:25,920 --> 03:05:26,800 ACCESSIBILITY, ACCESSIBLE IN A 5676 03:05:26,800 --> 03:05:34,240 WAY THAT MAKES EVERYTHING BETTER 5677 03:05:34,240 --> 03:05:35,480 FOR -- MAKES IT EASIER FOR 5678 03:05:35,480 --> 03:05:36,080 EVERYONE TO HAVE ACCESS. 5679 03:05:36,080 --> 03:05:37,600 THANK YOU. 5680 03:05:37,600 --> 03:05:39,360 >>THANK YOU, IVANOVA. 5681 03:05:39,360 --> 03:05:40,560 AND JOSH, DID YOU HAVE A 5682 03:05:40,560 --> 03:05:40,960 COMMENT? 5683 03:05:40,960 --> 03:05:43,440 >>NO, I WAS JUST GOING TO THANK 5684 03:05:43,440 --> 03:05:43,640 HER. 5685 03:05:43,640 --> 03:05:44,000 >>OH. 5686 03:05:44,000 --> 03:05:45,400 THANK YOU. 5687 03:05:45,400 --> 03:05:46,440 NEXT, SAM CRANE. 5688 03:05:46,440 --> 03:05:49,120 DO YOU HAVE A COMMENT? 5689 03:05:49,120 --> 03:05:51,600 >>HI, EVERYONE I JUST WANTED 5690 03:05:51,600 --> 03:05:53,480 TO -- I HAD JUST TWO QUICK 5691 03:05:53,480 --> 03:05:53,760 COMMENTS. 5692 03:05:53,760 --> 03:05:57,720 ONE IS I REALLY APPRECIATED 5693 03:05:57,720 --> 03:05:58,240 DR. KEENAN'S COMMENTS. 5694 03:05:58,240 --> 03:05:59,520 I THINK THAT IT'S IMPORTANT FOR 5695 03:05:59,520 --> 03:06:02,000 US TO RECOGNIZE THAT JUST 5696 03:06:02,000 --> 03:06:05,200 BECAUSE SOMEONE IS STANDING OR 5697 03:06:05,200 --> 03:06:06,800 SITTING OR WHATEVER IN FRONT OF 5698 03:06:06,800 --> 03:06:10,080 THIS COMMITTEE TODAY, WE REALLY 5699 03:06:10,080 --> 03:06:12,560 DON'T KNOW WHAT THAT PERSON'S 5700 03:06:12,560 --> 03:06:14,320 LIFE IS AND WHAT THEIR 5701 03:06:14,320 --> 03:06:16,960 FUNCTIONAL SUPPORT NEEDS ARE. 5702 03:06:16,960 --> 03:06:19,240 AND THEN JUST TO RESPOND VERY 5703 03:06:19,240 --> 03:06:21,920 QUICKLY TO JALYNN'S COMMENT, 5704 03:06:21,920 --> 03:06:24,080 THIS IS A REALLY COMMON ISSUE. 5705 03:06:24,080 --> 03:06:27,560 I KNOW MAYBE 20 PEOPLE WHO MATCH 5706 03:06:27,560 --> 03:06:30,720 THIS DESCRIPTION THAT SHE'S 5707 03:06:30,720 --> 03:06:31,920 DESCRIBING OF SOMEONE WHO HAS 5708 03:06:31,920 --> 03:06:34,840 VERY SIGNIFICANT MEDICATION 5709 03:06:34,840 --> 03:06:39,320 MANAGEMENT NEEDS AND CANNOT HAVE 5710 03:06:39,320 --> 03:06:40,640 THEIR PATIENT MANAGED WITHOUT 5711 03:06:40,640 --> 03:06:41,520 SIGNIFICANT SUPPORTS. 5712 03:06:41,520 --> 03:06:44,120 AND THAT'S ONE REASON WHY 5713 03:06:44,120 --> 03:06:49,560 ADVOCATES HAVE BEEN AGITATING 5714 03:06:49,560 --> 03:06:51,600 PRETTY STRENUOUSLY FOR PAID, 5715 03:06:51,600 --> 03:06:52,400 IN-HOME SUPPORTS THAT COME INTO 5716 03:06:52,400 --> 03:06:55,920 A PERSON'S HOUSE AND HELP 5717 03:06:55,920 --> 03:06:59,000 SOMEONE WITH MEDICATION AND WITH 5718 03:06:59,000 --> 03:07:00,400 OTHER ACTIVITIES OF DAILY LIVING 5719 03:07:00,400 --> 03:07:03,120 BY KEEPING THAT PERSON IN THEIR 5720 03:07:03,120 --> 03:07:04,600 HOME AND THE COMMUNITY, THEY DO 5721 03:07:04,600 --> 03:07:08,120 RETAIN THE ABILITY TO HAVE STM 5722 03:07:08,120 --> 03:07:12,680 LAITSTIMULATION, TO SEE FRIENDSO 5723 03:07:12,680 --> 03:07:14,840 HAVE ACTIVITIES, TO TAKE WALKS. 5724 03:07:14,840 --> 03:07:16,640 AT SOME POINT WHEN THEY'RE 5725 03:07:16,640 --> 03:07:17,640 READY, THEY CAN GAIN EMPLOYMENT. 5726 03:07:17,640 --> 03:07:18,960 IT'S MUCH MORE DIFFICULT TO 5727 03:07:18,960 --> 03:07:20,480 OBTAIN EMPLOYMENT IF YOU'RE AT A 5728 03:07:20,480 --> 03:07:23,520 MEDICAL FACILITY. 5729 03:07:23,520 --> 03:07:24,720 JUST IN TERMS OF TRANSPORTATION, 5730 03:07:24,720 --> 03:07:26,040 THE DISCRIMINATION THAT YOU FACE 5731 03:07:26,040 --> 03:07:28,520 IF THAT'S YOUR ADDRESS, AND SO 5732 03:07:28,520 --> 03:07:31,400 THAT IS SOMETHING THAT HAS BEEN 5733 03:07:31,400 --> 03:07:32,280 ADDRESSED IN THE COMMUNITY FOR 5734 03:07:32,280 --> 03:07:34,680 MANY YEARS NOW. 5735 03:07:34,680 --> 03:07:36,320 >>THANK YOU, SAM, FOR SHARING 5736 03:07:36,320 --> 03:07:37,400 THAT. 5737 03:07:37,400 --> 03:07:42,000 WE APPRECIATE THAT. 5738 03:07:42,000 --> 03:07:47,560 EYAISHA DICKERSON. 5739 03:07:47,560 --> 03:07:51,120 >>I DID SEE A COMMENT ON THE 5740 03:07:51,120 --> 03:07:52,560 PUBLIC COMMENT ABOUT AIR TIME OF 5741 03:07:52,560 --> 03:07:54,200 IACC MEMBERS, AND I HAVE TO SAY, 5742 03:07:54,200 --> 03:07:57,840 I KIND OF AGREE THAT THERE DOES 5743 03:07:57,840 --> 03:07:59,240 TEND TO BE A CLUSTER OF PEOPLE 5744 03:07:59,240 --> 03:08:00,680 WHO MONOPOLIZE A LOT OF THE 5745 03:08:00,680 --> 03:08:03,120 COMMENT TIME, SO I HAD A 5746 03:08:03,120 --> 03:08:03,440 SUGGESTION. 5747 03:08:03,440 --> 03:08:04,360 AND IT'S JUST SOMETHING THAT I 5748 03:08:04,360 --> 03:08:05,880 DO IN MY GROUP MEETINGS. 5749 03:08:05,880 --> 03:08:07,480 IS THERE A WAY THAT WE CAN LIMIT 5750 03:08:07,480 --> 03:08:09,240 THE AMOUNT OF TIME THAT PEOPLE 5751 03:08:09,240 --> 03:08:12,080 HAVE DEDICATED TO COMMENT, THE 5752 03:08:12,080 --> 03:08:14,480 SAME WAY WE LIMIT THE AMOUNT OF 5753 03:08:14,480 --> 03:08:16,360 TIME DEDICATED TO PUBLIC 5754 03:08:16,360 --> 03:08:16,960 COMMENT? 5755 03:08:16,960 --> 03:08:19,240 THAT'S A SUGGESTION OPTION. 5756 03:08:19,240 --> 03:08:20,280 SO THAT'S ONE. 5757 03:08:20,280 --> 03:08:30,120 AND THEN TWO, I HAD A QUESTION 5758 03:08:30,120 --> 03:08:31,960 SPECIFIC TO RISK VERSUS 5759 03:08:31,960 --> 03:08:32,400 LIKELIHOOD. 5760 03:08:32,400 --> 03:08:33,520 THIS IS SOMETHING WE'VE BEEN 5761 03:08:33,520 --> 03:08:34,400 DISCUSSING A LOT WITHIN THE 5762 03:08:34,400 --> 03:08:35,520 AUTISM RESEARCH COMMUNITY. 5763 03:08:35,520 --> 03:08:36,960 SO RISK IS A TERM WE OFTEN USE 5764 03:08:36,960 --> 03:08:41,200 FOR STATISTICS LIKE RISK RATIO, 5765 03:08:41,200 --> 03:08:42,040 RELATIVE RISK, WHICH IS 5766 03:08:42,040 --> 03:08:44,680 DIFFERENT FROM A LAKELY HOOD 5767 03:08:44,680 --> 03:08:44,960 RATIO. 5768 03:08:44,960 --> 03:08:49,520 SO I WANTED TO ASK MORENIKE AND 5769 03:08:49,520 --> 03:08:50,520 ANYONE ELSE ON THE CALL THAT 5770 03:08:50,520 --> 03:08:51,360 MIGHT HAVE SUGGESTIONS, WHAT 5771 03:08:51,360 --> 03:08:55,160 WOULD BE A BETTER TERMINOLOGY 5772 03:08:55,160 --> 03:08:57,160 FOR STATISTICAL EVALUATION OF 5773 03:08:57,160 --> 03:09:00,840 LIKELIHOOD OF AN AUTISM 5774 03:09:00,840 --> 03:09:01,800 DIAGNOSIS IN RESEARCH? 5775 03:09:01,800 --> 03:09:07,720 AND THAT'S ALL. 5776 03:09:07,720 --> 03:09:08,560 >>THANK YOU FOR THAT COMMENT. 5777 03:09:08,560 --> 03:09:09,440 WE MIGHT HAVE TO HAVE THAT 5778 03:09:09,440 --> 03:09:10,280 DISCUSSION OFFLINE BECAUSE OF 5779 03:09:10,280 --> 03:09:12,080 THE TIME WE HAVE HERE, BUT WE 5780 03:09:12,080 --> 03:09:14,280 CERTAINLY CAN TAKE INTO 5781 03:09:14,280 --> 03:09:15,640 CONSIDERATION IF THE COMMITTEE 5782 03:09:15,640 --> 03:09:16,720 WOULD PROVIDE ANY COMMENTS THAT 5783 03:09:16,720 --> 03:09:19,280 YOU HAVE BASED ON THAT QUESTION 5784 03:09:19,280 --> 03:09:23,880 ABOUT WAYS THAT WE CAN DESCRIBE 5785 03:09:23,880 --> 03:09:25,080 LIKELIHOOD, RISK OR OTHER 5786 03:09:25,080 --> 03:09:26,320 RELATED CONCEPTS, YOU CAN PUT 5787 03:09:26,320 --> 03:09:29,120 THOSE IN YOUR STRATEGIC PLAN 5788 03:09:29,120 --> 03:09:29,360 COMMENTS. 5789 03:09:29,360 --> 03:09:31,000 >>AND ABSOLUTELY, I THINK IT'S 5790 03:09:31,000 --> 03:09:32,520 IMPORTANT TO RECOGNIZE THE 5791 03:09:32,520 --> 03:09:35,080 TERMINOLOGY WE USE IN THE 5792 03:09:35,080 --> 03:09:35,720 STRATEGIC PLAN IS NOT MEANT TO 5793 03:09:35,720 --> 03:09:37,160 BE THE TERMINOLOGY ONE WOULD USE 5794 03:09:37,160 --> 03:09:38,400 IN A SCIENTIFIC REPORT. 5795 03:09:38,400 --> 03:09:42,680 BUT I THINK AISHA, YOU'RE 5796 03:09:42,680 --> 03:09:43,240 APPROPRIATELY RAISING THE 5797 03:09:43,240 --> 03:09:44,040 QUESTION OKAY, I WANT TO LEARN 5798 03:09:44,040 --> 03:09:45,440 FROM THIS, IF WE'RE NOT SUPPOSED 5799 03:09:45,440 --> 03:09:47,000 TO USE RISK, WHICH IS A VERY 5800 03:09:47,000 --> 03:09:48,520 COMMONLY USED TERM FROM A 5801 03:09:48,520 --> 03:09:49,680 STATISTICAL PERSPECTIVE, WHAT 5802 03:09:49,680 --> 03:09:51,480 WORD MIGHT WE USE OTHER THAN 5803 03:09:51,480 --> 03:09:52,880 LIKELIHOOD BECAUSE THAT HAS ITS 5804 03:09:52,880 --> 03:09:54,720 OWN SCIENTIFIC MEANING THAT'S 5805 03:09:54,720 --> 03:09:55,600 DIFFERENT AS WELL. 5806 03:09:55,600 --> 03:09:57,760 SO APPRECIATE YOU RAISING THAT, 5807 03:09:57,760 --> 03:09:58,760 AND AS SUSAN SUGGESTS, THAT'S 5808 03:09:58,760 --> 03:10:00,720 SOMETHING WE CAN FOLLOW UP WITH 5809 03:10:00,720 --> 03:10:00,960 OFFLINE. 5810 03:10:00,960 --> 03:10:04,800 >>THANK YOU. 5811 03:10:04,800 --> 03:10:11,960 ALYCIA HALLADAY. 5812 03:10:11,960 --> 03:10:12,840 >>AM I BACK ON? 5813 03:10:12,840 --> 03:10:14,000 >>I CAN HEAR YOU. 5814 03:10:14,000 --> 03:10:15,840 >>GREAT, THANK YOU. 5815 03:10:15,840 --> 03:10:17,120 SO I WANT TO THANK YOU FOR 5816 03:10:17,120 --> 03:10:18,240 LETTING ME ADDRESS SOME OF THE 5817 03:10:18,240 --> 03:10:19,520 COMMENTS THAT HAVE BEEN MADE 5818 03:10:19,520 --> 03:10:22,880 BOTH IN THE PUBLIC COMMENT AS 5819 03:10:22,880 --> 03:10:23,680 WELL AS RESPONSE TO PUBLIC 5820 03:10:23,680 --> 03:10:24,720 COMMENT IN THE LAST 30 MINUTES. 5821 03:10:24,720 --> 03:10:26,240 I THINK THERE'S ESSENTIALLY BEEN 5822 03:10:26,240 --> 03:10:29,360 A MISCHARACTERIZATION AND 5823 03:10:29,360 --> 03:10:30,280 MISUNDERSTANDING OF PROBABLY HOW 5824 03:10:30,280 --> 03:10:32,720 THE MAJORITY OF PEOPLE PERCEIVE 5825 03:10:32,720 --> 03:10:34,120 WHAT'S ACCURATE OR WHAT'S 5826 03:10:34,120 --> 03:10:36,680 ACCEPTABLE TERMINOLOGY TO REFER 5827 03:10:36,680 --> 03:10:37,640 TO AUTISM. 5828 03:10:37,640 --> 03:10:39,320 IT'S CLEARLY A COMPLEX ISSUE, 5829 03:10:39,320 --> 03:10:42,160 AND ACTUALLY DR. GORDON, I WANT 5830 03:10:42,160 --> 03:10:43,960 TO ACKNOWLEDGE YOU FOR THINKING 5831 03:10:43,960 --> 03:10:45,240 ABOUT THIS AND PUBLISHING ABOUT 5832 03:10:45,240 --> 03:10:46,720 THIS WHEN IT COMES TO MENTAL 5833 03:10:46,720 --> 03:10:48,400 HEALTH AND SUBSTANCE ABUSE, SO 5834 03:10:48,400 --> 03:10:49,000 YOU'RE ACTUALLY AN EXCELLENT 5835 03:10:49,000 --> 03:10:51,120 PERSON TO HELP GUIDE US. 5836 03:10:51,120 --> 03:10:52,680 NOW WE SPEND A LOT OF TIME 5837 03:10:52,680 --> 03:10:53,480 TALKING ABOUT THIS, BUT IT'S 5838 03:10:53,480 --> 03:10:56,240 REALLY NOT AS DICHOTOMOUS AS HAS 5839 03:10:56,240 --> 03:10:58,200 BEEN PORTRAYED IN RECENT 5840 03:10:58,200 --> 03:11:00,040 ATTEMPTS TO DICTATE LANGUAGE, 5841 03:11:00,040 --> 03:11:04,280 AND ONE ACTUAL EXAMPLE IS WHAT 5842 03:11:04,280 --> 03:11:07,560 DR. DRIK DICKERSON JUST MENTION, 5843 03:11:07,560 --> 03:11:08,720 THE USE OF RISK WHEN YOU'RE 5844 03:11:08,720 --> 03:11:10,360 TALKING ABOUT STATISTICS VERSUS 5845 03:11:10,360 --> 03:11:11,800 RISK WHEN YOU'RE TALKING ABOUT A 5846 03:11:11,800 --> 03:11:13,720 PROBABILITY. 5847 03:11:13,720 --> 03:11:15,760 SO AGAIN, THERE'S BEEN DIVERSITY 5848 03:11:15,760 --> 03:11:17,280 AGAIN JUST IN THE LAST 30 5849 03:11:17,280 --> 03:11:18,720 MINUTES, AND TO ADD TO THAT, 5850 03:11:18,720 --> 03:11:20,760 SOME PEOPLE PREFER PERSON FIRST 5851 03:11:20,760 --> 03:11:22,280 LANGUAGE AND OTHERS PREFER 5852 03:11:22,280 --> 03:11:24,800 IDENTITY FIRST LANGUAGE. 5853 03:11:24,800 --> 03:11:26,200 SOME PEOPLE EVEN ON THIS CALL 5854 03:11:26,200 --> 03:11:27,840 HAVE CALLED CONDITIONS 5855 03:11:27,840 --> 03:11:29,000 CO-OCCURRING AND OTHERS HAVE 5856 03:11:29,000 --> 03:11:29,920 CALLED THEM CO-MORBID. 5857 03:11:29,920 --> 03:11:31,880 AND THESE ARE JUST EXAMPLES OF 5858 03:11:31,880 --> 03:11:33,000 MANY. 5859 03:11:33,000 --> 03:11:35,120 SO THERE IS A GREAT DIVERSITY. 5860 03:11:35,120 --> 03:11:37,280 AND WHO'S SURPRISED BY THAT? 5861 03:11:37,280 --> 03:11:39,920 THERE'S A GREAT DIVERSITY IN 5862 03:11:39,920 --> 03:11:41,200 PREFERENCE BECAUSE WE COME FROM 5863 03:11:41,200 --> 03:11:42,720 DIVERSE BACKGROUNDS, WE HAVE 5864 03:11:42,720 --> 03:11:43,800 DIFFERENT CULTURAL BACKGROUNDS, 5865 03:11:43,800 --> 03:11:45,480 WE LIVE IN DIFFERENT COUNTRIES. 5866 03:11:45,480 --> 03:11:48,800 SOME OF THE COUNTRIES WE LIVE 5867 03:11:48,800 --> 03:11:50,200 IN, YOU KNOW, PROVIDE SERVICES, 5868 03:11:50,200 --> 03:11:52,760 AND THIS IS EVEN INCLUDING THE 5869 03:11:52,760 --> 03:11:53,440 UNITED STATES BASED ON SOMETIMES 5870 03:11:53,440 --> 03:11:55,040 THE CERTAIN LANGUAGE THAT'S USED 5871 03:11:55,040 --> 03:11:55,800 THAT'S ESSENTIAL TO RECEIVE 5872 03:11:55,800 --> 03:11:57,240 THOSE SERVICES. 5873 03:11:57,240 --> 03:11:59,760 AND OF COURSE TERMS ARE BASED ON 5874 03:11:59,760 --> 03:12:00,200 CONTEXT. 5875 03:12:00,200 --> 03:12:01,520 WE JUST HEARD SCOTT TALK ABOUT 5876 03:12:01,520 --> 03:12:03,280 HOW THERE'S DATA AROUND USE OF 5877 03:12:03,280 --> 03:12:05,160 LANGUAGE AND HOW IT CAN BE 5878 03:12:05,160 --> 03:12:06,480 STIGMATIZING AND I'D LIKE TO ASK 5879 03:12:06,480 --> 03:12:08,200 SCOTT TO SEND ME THAT DATA OR AT 5880 03:12:08,200 --> 03:12:10,920 LEAST THE MANUSCRIPT PLEASE, 5881 03:12:10,920 --> 03:12:12,120 DON'T SEND ME THE RAW DATA. 5882 03:12:12,120 --> 03:12:13,760 BUT I COULDN'T HELP THINKING 5883 03:12:13,760 --> 03:12:15,360 WHEN I HEARD THIS, STIGMATIZING 5884 03:12:15,360 --> 03:12:16,560 TO WHO, AND WHO DECIDES? 5885 03:12:16,560 --> 03:12:18,400 THERE'S CERTAINLY A DIVERSITY OF 5886 03:12:18,400 --> 03:12:19,000 PREFERENCES. 5887 03:12:19,000 --> 03:12:20,120 AND THE COMMUNITY HAS NOW 5888 03:12:20,120 --> 03:12:22,080 DISCERNED WHAT IS SCIENTIFICALLY 5889 03:12:22,080 --> 03:12:24,040 APPROPRIATE VERSUS WHAT IS 5890 03:12:24,040 --> 03:12:26,680 APPROPRIATE IN MORE LIKE LAY 5891 03:12:26,680 --> 03:12:27,960 LANGUAGE OR DISCUSSION SETTINGS. 5892 03:12:27,960 --> 03:12:29,800 AND I THINK PART OF THE PROBLEM 5893 03:12:29,800 --> 03:12:31,760 IS THAT MANY RECENT PUBLICATIONS 5894 03:12:31,760 --> 03:12:35,320 HAVE LEFT NO ROOM FOR THE 5895 03:12:35,320 --> 03:12:35,920 DIVERSE OPINION IN THE USE OF 5896 03:12:35,920 --> 03:12:37,640 WORDS, INCLUDING THINGS LIKE 5897 03:12:37,640 --> 03:12:38,840 PERSON-FIRST VERSUS 5898 03:12:38,840 --> 03:12:40,440 IDENTITY-FIRST LANGUAGE OR OTHER 5899 03:12:40,440 --> 03:12:42,640 TERMS I'M HEARING EVEN HAVE 5900 03:12:42,640 --> 03:12:43,760 DIVERSE PREFERENCES. 5901 03:12:43,760 --> 03:12:45,800 THESE PUBLICATIONS DRAW LINES 5902 03:12:45,800 --> 03:12:47,320 ABOUT WORDS THAT THEY CAN BE 5903 03:12:47,320 --> 03:12:48,520 USED OR NOT. 5904 03:12:48,520 --> 03:12:49,800 NOT THAT THEY CAN BE USED IN 5905 03:12:49,800 --> 03:12:50,600 CERTAIN CONTEXTS. 5906 03:12:50,600 --> 03:12:56,640 THEY CAN EITHER BE USED OR NOT. 5907 03:12:56,640 --> 03:12:57,560 UNFOSHTLY THIS CAN BE SHORT 5908 03:12:57,560 --> 03:12:58,000 SIGHTED. 5909 03:12:58,000 --> 03:13:00,160 I HOPE THE IACC OR SOMEONE ELSE, 5910 03:13:00,160 --> 03:13:01,760 SINCE I DON'T THINK THIS IS THE 5911 03:13:01,760 --> 03:13:03,720 PURVIEW OF THE IACC, USE A MORE 5912 03:13:03,720 --> 03:13:04,520 DATA-DRIVEN APPROACH OF 5913 03:13:04,520 --> 03:13:06,000 COLLECTING PREFERENCES AMONG 5914 03:13:06,000 --> 03:13:06,760 DIFFERENT GROUPS OF PEOPLE SO 5915 03:13:06,760 --> 03:13:08,840 THAT WE CAN ENSURE THAT THE MOST 5916 03:13:08,840 --> 03:13:10,280 SCIENTIFICALLY ACCURATE BUT ALSO 5917 03:13:10,280 --> 03:13:12,520 RESPECTFUL LANGUAGE IS USED TO 5918 03:13:12,520 --> 03:13:14,280 CHARACTERIZE THE PERSON, THE 5919 03:13:14,280 --> 03:13:15,920 SITUATION, AND OF COURSE THE 5920 03:13:15,920 --> 03:13:16,240 CONTEXT. 5921 03:13:16,240 --> 03:13:18,520 AND I THINK EVERYONE HERE IS 5922 03:13:18,520 --> 03:13:20,200 TOTALLY IN FAVOR OF USING 5923 03:13:20,200 --> 03:13:21,160 RESPECTFUL AND ACCURATE LANGUAGE 5924 03:13:21,160 --> 03:13:23,040 THAT RESPECTS THE DIVERSITY OF 5925 03:13:23,040 --> 03:13:23,640 OPINION. 5926 03:13:23,640 --> 03:13:24,840 HOWEVER, THE CURRENT GUIDANCE 5927 03:13:24,840 --> 03:13:27,240 THAT'S BEEN PUBLISHED IS PRETTY 5928 03:13:27,240 --> 03:13:29,280 DOGMATIC, AND I DON'T THINK THAT 5929 03:13:29,280 --> 03:13:30,360 IT ACCURATELY REFLECTS THE 5930 03:13:30,360 --> 03:13:31,160 FEELINGS OF THE BROADER 5931 03:13:31,160 --> 03:13:31,560 COMMUNITY. 5932 03:13:31,560 --> 03:13:33,520 SO I THINK WE NEED A LARGER 5933 03:13:33,520 --> 03:13:34,840 CONVERSATION, MAYBE NOT AT THE 5934 03:13:34,840 --> 03:13:36,960 IACC MEETING, ABOUT THIS, BUT IN 5935 03:13:36,960 --> 03:13:39,280 THE MEANTIME, I THINK WE SHOULD 5936 03:13:39,280 --> 03:13:42,000 EMBRACE DIFFERENT PERSPECTIVES 5937 03:13:42,000 --> 03:13:43,760 AND DIFFERENT IDEALS ABOUT WHAT 5938 03:13:43,760 --> 03:13:47,280 IS ACCEPTABLE TERMINOLOGY. 5939 03:13:47,280 --> 03:13:49,120 >>THANK YOU FOR THAT SUMMARY, 5940 03:13:49,120 --> 03:13:49,360 ALYCIA. 5941 03:13:49,360 --> 03:13:50,400 WE APPRECIATE HEARING FROM YOU 5942 03:13:50,400 --> 03:13:51,160 ON THAT. 5943 03:13:51,160 --> 03:13:53,760 AND WE HAVE ALISON MARVIN AND 5944 03:13:53,760 --> 03:13:56,480 THEN IT SOUNDS LIKE STEVEN HAS 5945 03:13:56,480 --> 03:13:57,600 SOME COMMENTS TO SHARE ON BEHALF 5946 03:13:57,600 --> 03:13:59,200 OF SOMEBODY THAT HAS SOME 5947 03:13:59,200 --> 03:13:59,640 FEEDBACK. 5948 03:13:59,640 --> 03:14:00,640 SO ALISON. 5949 03:14:00,640 --> 03:14:01,800 >>HI. 5950 03:14:01,800 --> 03:14:05,040 THIS IS ALISON MARVIN FROM THE 5951 03:14:05,040 --> 03:14:06,280 SOCIAL SECURITY ADMINISTRATION. 5952 03:14:06,280 --> 03:14:08,360 I JUST WANTED TO FIRST 5953 03:14:08,360 --> 03:14:12,480 ACKNOWLEDGE THE COMMENT FROM 5954 03:14:12,480 --> 03:14:14,760 LORI TORE EZ ABOUT THE 5955 03:14:14,760 --> 03:14:15,760 DIFFICULTIES SHE'S BEEN HAVING 5956 03:14:15,760 --> 03:14:16,640 WITH OUR SOCIAL SECURITY AND I 5957 03:14:16,640 --> 03:14:20,440 ALSO WANT TO ADDRESS VIOLA 5958 03:14:20,440 --> 03:14:24,040 SANCHEZ'S COMMENTS, THAT SSI HAS 5959 03:14:24,040 --> 03:14:25,560 NO HEART AND DONE WITH HELPING 5960 03:14:25,560 --> 03:14:28,200 HER, HER GRANDSON AND HE TURNED 5961 03:14:28,200 --> 03:14:33,400 18 AND HIS BENEFITS -- HE LOST 5962 03:14:33,400 --> 03:14:34,080 HIS BENEFITS. 5963 03:14:34,080 --> 03:14:36,240 I JUST WANTED TO JUST MAKE A 5964 03:14:36,240 --> 03:14:39,920 REMINDER THAT S SA, SOCIAL 5965 03:14:39,920 --> 03:14:42,240 SECURITY ADMINISTRATION, 5966 03:14:42,240 --> 03:14:45,000 ADMINISTERS THE LAW. 5967 03:14:45,000 --> 03:14:48,680 THAT'S WHAT THE AGENCY DOES. 5968 03:14:48,680 --> 03:14:52,640 AND SO IT DOES NOT SET POLICY. 5969 03:14:52,640 --> 03:14:54,160 IF YOU WOULD LIKE THE LAW TO BE 5970 03:14:54,160 --> 03:14:56,120 CHANGED, PLEASE CONTACT THE 5971 03:14:56,120 --> 03:14:57,520 LAWMAKERS, AND YOU MIGHT BE 5972 03:14:57,520 --> 03:15:00,240 INTERESTED TO SEE THAT SSA 5973 03:15:00,240 --> 03:15:03,600 REGULARLY SUBMITS LEGISLATIVE 5974 03:15:03,600 --> 03:15:06,440 PROPOSALS AND IF YOU LOOK AT 5975 03:15:06,440 --> 03:15:07,400 SSA.GOV/LEGISLATION UNDER THE 5976 03:15:07,400 --> 03:15:10,800 FIRST LINK, LEGISLATIVE 5977 03:15:10,800 --> 03:15:14,840 PROPOSALS, YOU'LL SEE WE 5978 03:15:14,840 --> 03:15:18,040 REGULARLY TRY TO GET THE LAW 5979 03:15:18,040 --> 03:15:19,960 CHANGED SO FOR EXAMPLE, LAST 5980 03:15:19,960 --> 03:15:27,400 YEAR'S FY 2021, WE HAD A 5981 03:15:27,400 --> 03:15:29,240 PROPOSAL TO IMPROVE YOUTH 5982 03:15:29,240 --> 03:15:30,360 INCENTIVES BY DISREGARDING ALL 5983 03:15:30,360 --> 03:15:32,280 EARNED INCOME AND ELIMINATING 5984 03:15:32,280 --> 03:15:33,040 REPORTING REQUIREMENTS THROUGH 5985 03:15:33,040 --> 03:15:34,720 AGE 20, PROVIDING A HIGHER 5986 03:15:34,720 --> 03:15:37,400 DISREGARD OF EARNINGS WITH A 5987 03:15:37,400 --> 03:15:39,480 GRADUAL PHASE-DOWN FOR SSI 5988 03:15:39,480 --> 03:15:41,200 RECIPIENTS BETWEEN AGES 21 AND 5989 03:15:41,200 --> 03:15:42,840 25, AND ELIMINATING SCHOOL 5990 03:15:42,840 --> 03:15:45,440 ENROLLMENT REPORTING 5991 03:15:45,440 --> 03:15:46,320 REQUIREMENTS. 5992 03:15:46,320 --> 03:15:48,640 AND WE ALSO REQUESTED BUDGET TO 5993 03:15:48,640 --> 03:15:51,200 IMPROVE ACCESS TO VOCATIONAL 5994 03:15:51,200 --> 03:15:55,840 REHABILITATION SERVICES. 5995 03:15:55,840 --> 03:15:59,120 SO THAT'S WHAT WE HAD IN FY 5996 03:15:59,120 --> 03:15:59,320 2021. 5997 03:15:59,320 --> 03:16:00,600 FY 2022 IS NOT UP THERE YET, BUT 5998 03:16:00,600 --> 03:16:05,120 THE PROPOSAL FROM SSA TO THE 5999 03:16:05,120 --> 03:16:06,200 LEGISLATORS WAS MORE GENEROUS 6000 03:16:06,200 --> 03:16:11,520 THAN THAT. 6001 03:16:11,520 --> 03:16:15,160 SO PLEASE CONTACT YOUR CONGRESS 6002 03:16:15,160 --> 03:16:16,240 PEOPLE AND IF YOU CAN GET THE 6003 03:16:16,240 --> 03:16:18,000 LAW CHANGED, THAT'S GREAT, BUT 6004 03:16:18,000 --> 03:16:22,440 CURRENTLY WE ARE LIMITED TO 6005 03:16:22,440 --> 03:16:24,520 ADMINISTERING WHAT THE CURRENT 6006 03:16:24,520 --> 03:16:25,960 LEGAL STATUS IS. 6007 03:16:25,960 --> 03:16:28,160 THANK YOU. 6008 03:16:28,160 --> 03:16:31,320 >>THANK YOU, ALISON. 6009 03:16:31,320 --> 03:16:33,120 AND NEXT, STEVEN, DO YOU HAVE 6010 03:16:33,120 --> 03:16:34,880 SOME COMMENTS TO SHARE ON BEHALF 6011 03:16:34,880 --> 03:16:37,320 OF COMMITTEE MEMBERS? 6012 03:16:37,320 --> 03:16:41,760 >>YES, I'M JUST SHARING ANOTHER 6013 03:16:41,760 --> 03:16:44,280 COMMENT FROM MORENIKE THAT SAY 6014 03:16:44,280 --> 03:16:45,800 THEY AGREE IT'S BEST TO HAVE A 6015 03:16:45,800 --> 03:16:47,280 DISCUSSION AROUND LANGUAGE 6016 03:16:47,280 --> 03:16:47,960 OFFLINE AND THEY SAID PLEASE 6017 03:16:47,960 --> 03:16:49,200 NOTE THAT THE NARRATIVES THAT 6018 03:16:49,200 --> 03:16:51,560 WERE REFERENCED IN THE PUBLIC 6019 03:16:51,560 --> 03:16:53,840 COMMENTS WERE ABOUT WORDS USED 6020 03:16:53,840 --> 03:16:56,800 BY FAMILIES, NOT ABOUT 6021 03:16:56,800 --> 03:16:58,000 STATISTICAL ANALYSIS AND 6022 03:16:58,000 --> 03:16:58,880 ACCURACY IN SCIENTIFIC 6023 03:16:58,880 --> 03:17:00,080 LITERATURE. 6024 03:17:00,080 --> 03:17:02,280 >>THANK YOU SO MUCH FOR THAT 6025 03:17:02,280 --> 03:17:03,760 CLARIFICATION. 6026 03:17:03,760 --> 03:17:05,840 AND WE'RE CLOSE ON TIME, WE'RE 6027 03:17:05,840 --> 03:17:06,800 ONLY 3 MINUTES OVER ON THE 6028 03:17:06,800 --> 03:17:07,080 SCHEDULE. 6029 03:17:07,080 --> 03:17:09,200 SHOULD WE RECONVENE RIGHT AT 6030 03:17:09,200 --> 03:17:11,360 2:30 OR DO WE WANT TO GIVE A FEW 6031 03:17:11,360 --> 03:17:13,120 EXTRA MINUTES SO PEOPLE CAN HAVE 6032 03:17:13,120 --> 03:17:13,720 THEIR 10-MINUTE BREAK? 6033 03:17:13,720 --> 03:17:16,040 >>I SAY WE GIVE A FEW EXTRA 6034 03:17:16,040 --> 03:17:17,080 MINUTES, LET'S GIVE THEM 10 6035 03:17:17,080 --> 03:17:18,640 MINUTES BUT I WANTED TO SAY 6036 03:17:18,640 --> 03:17:19,120 SOMETHING IN CLOSING. 6037 03:17:19,120 --> 03:17:19,920 I REALLY APPRECIATE THE BACK AND 6038 03:17:19,920 --> 03:17:20,400 FORTH. 6039 03:17:20,400 --> 03:17:23,400 I APPRECIATE THAT THE TENOR OF 6040 03:17:23,400 --> 03:17:24,640 THE CONVERSATION WAS FOR THE 6041 03:17:24,640 --> 03:17:25,640 MOST PART RESPECTFUL. 6042 03:17:25,640 --> 03:17:27,280 WE TOUCHED ON SOME ISSUES THAT 6043 03:17:27,280 --> 03:17:28,800 ARE VERY SENSITIVE, PARTICULARLY 6044 03:17:28,800 --> 03:17:30,640 AROUND LANGUAGE, AND IT'S 6045 03:17:30,640 --> 03:17:32,160 IMPORTANT FOR US TO AGREE ON 6046 03:17:32,160 --> 03:17:35,120 LANGUAGE AS A COMMITTEE FOR THE 6047 03:17:35,120 --> 03:17:36,920 REPORT. 6048 03:17:36,920 --> 03:17:39,920 SO IF IN REVIEWING THE REPORT 6049 03:17:39,920 --> 03:17:41,760 YOU HAVE SPECIFIC SUGGESTIONS 6050 03:17:41,760 --> 03:17:43,120 REGARDING OUR USE OF LANGUAGE 6051 03:17:43,120 --> 03:17:45,000 THAT YOU FEEL YOU WANT TO CHANGE 6052 03:17:45,000 --> 03:17:46,320 IN LIGHT OF THE CONVERSATION WE 6053 03:17:46,320 --> 03:17:48,840 HAD TODAY, I ENCOURAGE YOU TO DO 6054 03:17:48,840 --> 03:17:50,920 SO. 6055 03:17:50,920 --> 03:17:52,320 AND IN FACT OF COURSE AS OTHERS 6056 03:17:52,320 --> 03:17:54,000 HAVE ALREADY MENTIONED, THAT 6057 03:17:54,000 --> 03:17:56,240 MANY OF THE COMMENTS WILL BE 6058 03:17:56,240 --> 03:17:57,360 INCORPORATED IN ONE WAY, SHAPE 6059 03:17:57,360 --> 03:17:59,640 OR FORM AS WE FINALIZE THE 6060 03:17:59,640 --> 03:18:03,040 STRATEGIC PLAN MOVING FORWARD. 6061 03:18:03,040 --> 03:18:06,720 SO WE'LL RECONVENE AT 2:35. 6062 03:18:06,720 --> 03:18:08,480 WE'LL BE FIVE MINUTES BEHIND 6063 03:18:08,480 --> 03:18:09,320 SCHEDULE SO WE'LL TRY TO MAKE IT 6064 03:18:09,320 --> 03:18:11,400 UP AT SOME POINT, BUT I THINK 6065 03:18:11,400 --> 03:18:12,920 PEOPLE NEED SOME TIME TO 6066 03:18:12,920 --> 03:18:13,560 DECOMPRESS. 6067 03:18:13,560 --> 03:18:14,480 THANK YOU, EVERYONE. 6068 03:18:14,480 --> 03:18:19,160 >>THANK YOU, EVERYONE. 6069 03:18:19,160 --> 03:18:22,520 >>WELCOME BACK TO OUR NEXT 6070 03:18:22,520 --> 03:18:24,400 SEGMENT OF THE IACC MEETING 6071 03:18:24,400 --> 03:18:26,120 WHERE WE'RE GOING TO TURN OUR 6072 03:18:26,120 --> 03:18:28,760 ATTENTION TO AN ISSUE THAT -- 6073 03:18:28,760 --> 03:18:30,040 YOU KNOW, THAT WE HAVEN'T YET 6074 03:18:30,040 --> 03:18:31,360 REALLY SPENT A LOT OF TIME 6075 03:18:31,360 --> 03:18:32,720 TALKING ABOUT, WHICH IS AUTISM 6076 03:18:32,720 --> 03:18:34,160 IN OLDER ADULTHOOD. 6077 03:18:34,160 --> 03:18:35,640 OF COURSE WE HAVE BEEN FOCUSING 6078 03:18:35,640 --> 03:18:39,000 MORE AND MORE ON LIFESPAN 6079 03:18:39,000 --> 03:18:40,800 ISSUES, BUT ONE ASPECT OF THE 6080 03:18:40,800 --> 03:18:42,440 LIFESPAN, OLDER AGE, IS ONE THAT 6081 03:18:42,440 --> 03:18:46,920 I THINK IT'S WORTH FOR US TO 6082 03:18:46,920 --> 03:18:48,320 CONSIDER AND SO WE'RE GOING TO 6083 03:18:48,320 --> 03:18:49,360 DO THAT FOR MUCH OF THE REST OF 6084 03:18:49,360 --> 03:18:50,200 THE AFTERNOON. 6085 03:18:50,200 --> 03:18:53,560 WE'RE GOING TO START WITH A 6086 03:18:53,560 --> 03:18:55,320 LIVED EXPERIENCE PANEL, AND THEN 6087 03:18:55,320 --> 03:18:57,720 HEAR ABOUT A BRIEF OVERVIEW OF 6088 03:18:57,720 --> 03:19:00,680 RESEARCH ON AUTISM IN OLDER AGE 6089 03:19:00,680 --> 03:19:03,040 FROM TWO SCIENTISTS, ONE OF THEM 6090 03:19:03,040 --> 03:19:06,760 A MEMBER OF THE IACC. 6091 03:19:06,760 --> 03:19:11,040 SO WE'RE GOING TO GO RIGHT AHEAD 6092 03:19:11,040 --> 03:19:12,360 AND LAUNCH INTO THIS PANEL. 6093 03:19:12,360 --> 03:19:13,760 BY WAY OF INTRODUCTION, WE KNOW 6094 03:19:13,760 --> 03:19:14,800 ADULTS HAVE VERY DIFFERENT NEEDS 6095 03:19:14,800 --> 03:19:16,240 FROM CHILDREN, CAREGIVERS OF 6096 03:19:16,240 --> 03:19:17,680 ADULTS HAVE DIFFERENT NEEDS FROM 6097 03:19:17,680 --> 03:19:19,400 CAREGIVERS OF CHILDREN AS WELL. 6098 03:19:19,400 --> 03:19:21,920 WHILE THE IACC HAS REALLY DONE 6099 03:19:21,920 --> 03:19:25,520 AN EXCELLENT JOB TO FOCUS AND 6100 03:19:25,520 --> 03:19:26,600 TRANSITION AGE YOUTH AND 6101 03:19:26,600 --> 03:19:27,680 PROGRESS ON ADULTS IN GENERAL 6102 03:19:27,680 --> 03:19:29,880 TODAY WE'RE REALLY GOING TO 6103 03:19:29,880 --> 03:19:32,000 FOCUS ON OLDER ADULTS, IN THEIR 6104 03:19:32,000 --> 03:19:32,800 60s OR LATER. 6105 03:19:32,800 --> 03:19:34,440 WE'LL START WITH A PANEL OF FIVE 6106 03:19:34,440 --> 03:19:35,440 PEOPLE WHO WILL SHARE THEIR 6107 03:19:35,440 --> 03:19:37,160 LIVED EXPERIENCES EITHER AS 6108 03:19:37,160 --> 03:19:38,720 AUTISTIC ADULTS OR CAREGIVERS 6109 03:19:38,720 --> 03:19:40,960 FOR AUTISTIC ADULTS. 6110 03:19:40,960 --> 03:19:45,680 WE'RE VERY HAPPY TO WELCOME BACK 6111 03:19:45,680 --> 03:19:47,400 MR. JOHN ROBISON. 6112 03:19:47,400 --> 03:19:48,320 MR. ROBISON HAS BEEN A FORMER 6113 03:19:48,320 --> 03:19:51,320 MEMBER OF THE IACC AND IS A 6114 03:19:51,320 --> 03:19:52,840 NEURODIVERSITY SCHOLAR IN 6115 03:19:52,840 --> 03:19:53,520 RESIDENCE AT THE COLLEGE OF 6116 03:19:53,520 --> 03:19:59,600 WILLIAM AND MARY AND AN YOU A AC 6117 03:19:59,600 --> 03:20:00,480 ADULT. 6118 03:20:00,480 --> 03:20:08,320 WE'LL ALSO WELCOME DR. YULANDA 6119 03:20:08,320 --> 03:20:12,800 HARRIS, TRAINING PHASE, AND RUTH 6120 03:20:12,800 --> 03:20:14,920 JONES, A SIBLING OF AN AUTISTIC 6121 03:20:14,920 --> 03:20:17,920 ADULT, HER BROTHER PETER. 6122 03:20:17,920 --> 03:20:19,040 OUR FOURTH PANELIST, LISA 6123 03:20:19,040 --> 03:20:20,880 MORGAN, FOUNDER AND CO-CHAIR OF 6124 03:20:20,880 --> 03:20:22,640 THE AUTISM AND SUICIDE COMMITTEE 6125 03:20:22,640 --> 03:20:24,280 OF THE AMERICAN COLLEGE OF 6126 03:20:24,280 --> 03:20:27,120 WILLIAM AND MARY, ASSOCIATION OF 6127 03:20:27,120 --> 03:20:28,000 SUICIDOLOGY. 6128 03:20:28,000 --> 03:20:35,080 OUR FIFTH PANEL, MS. SUE SWEZEY. 6129 03:20:35,080 --> 03:20:37,520 THANK YOU ALL FOR JOINING US 6130 03:20:37,520 --> 03:20:38,800 TODAY, AND FOR THE WILLINGNESS 6131 03:20:38,800 --> 03:20:41,640 TO SHARE YOUR STORIES. 6132 03:20:41,640 --> 03:20:43,960 I'M GOING TO ASK JOHN ROBISON TO 6133 03:20:43,960 --> 03:20:46,240 LEAD THE PANEL PRESENTATION. 6134 03:20:46,240 --> 03:20:47,760 JOHN, OR YOU SHOULD SAY TO LEAD 6135 03:20:47,760 --> 03:20:49,960 IT ON. 6136 03:20:49,960 --> 03:20:50,800 JOHN, TAKE IT OVER. 6137 03:20:50,800 --> 03:20:52,280 >>THERE. 6138 03:20:52,280 --> 03:20:52,640 OKAY. 6139 03:20:52,640 --> 03:20:55,600 CAN YOU ALL SEE AND HEAR ME NOW? 6140 03:20:55,600 --> 03:20:57,040 >>WE CAN INDEED. 6141 03:20:57,040 --> 03:21:02,720 >>OKAY. 6142 03:21:02,720 --> 03:21:04,160 SO FIRST OF ALL, THOSE OF YOU 6143 03:21:04,160 --> 03:21:06,520 WHO KNOW ME FROM MY TIME ON THE 6144 03:21:06,520 --> 03:21:09,360 IACC, YOU KNOW I GENERALLY JUST 6145 03:21:09,360 --> 03:21:13,080 SPEAK OFF THE CUFF, BUT TODAY, I 6146 03:21:13,080 --> 03:21:14,840 HAVE WRITTEN THIS OUT SO THAT I 6147 03:21:14,840 --> 03:21:17,880 CAN POST A TRANSCRIPT ONLINE 6148 03:21:17,880 --> 03:21:21,160 AFTER THE PRESENTATION IF ANYONE 6149 03:21:21,160 --> 03:21:21,920 WISHES TO HAVE FURTHER 6150 03:21:21,920 --> 03:21:24,320 DISCUSSION. 6151 03:21:24,320 --> 03:21:26,160 I'VE BEEN INVOLVED WITH AUTISM 6152 03:21:26,160 --> 03:21:29,240 ADVOCACY FOR 25 YEARS NOW. 6153 03:21:29,240 --> 03:21:30,320 THROUGHOUT THAT TIME, 6154 03:21:30,320 --> 03:21:32,040 PARTICULARLY DURING MY 15 YEARS 6155 03:21:32,040 --> 03:21:35,320 OF GOVERNMENT SERVICE, I MOSTLY 6156 03:21:35,320 --> 03:21:36,840 ADVOCATED FOR AUTISTIC PEOPLE 6157 03:21:36,840 --> 03:21:38,040 YOUNGER THAN I. 6158 03:21:38,040 --> 03:21:41,400 BUT AT AGE 65, I'M HERE TO ASK, 6159 03:21:41,400 --> 03:21:43,920 WHAT ABOUT THE OLDER AUTISTIC 6160 03:21:43,920 --> 03:21:44,200 POPULATION? 6161 03:21:44,200 --> 03:21:45,800 WE HAVE UNANSWERED QUESTIONS AND 6162 03:21:45,800 --> 03:21:49,320 WE NEED SUPPORT. 6163 03:21:49,320 --> 03:21:50,960 I'D LIKE TO SHARE SOME OF THE 6164 03:21:50,960 --> 03:21:52,600 THINGS I'VE EXPERIENCED. 6165 03:21:52,600 --> 03:21:53,760 ALL AUTISTIC PEOPLE HAVE 6166 03:21:53,760 --> 03:21:55,720 SOME DEGREE OF BLINDNESS TO THE 6167 03:21:55,720 --> 03:21:58,440 UNSPOKEN MESSAGES OF OTHERS. 6168 03:21:58,440 --> 03:21:59,560 IT'S PART OF THE DIAGNOSTIC 6169 03:21:59,560 --> 03:22:00,760 CRITERIA. 6170 03:22:00,760 --> 03:22:03,400 WHAT ABOUT BLINDNESS TO 6171 03:22:03,400 --> 03:22:05,000 OURSELVES, TO OUR OWN BODIES? 6172 03:22:05,000 --> 03:22:07,200 THAT'S LESS STUDIED, BUT EQUALLY 6173 03:22:07,200 --> 03:22:07,640 REAL. 6174 03:22:07,640 --> 03:22:11,160 I DON'T HAVE A GOOD SENSE, FOR 6175 03:22:11,160 --> 03:22:11,880 EXAMPLE, OF WHEN I'M HURT. 6176 03:22:11,880 --> 03:22:15,040 I DON'T KNOW WHEN I'M TOO COLD 6177 03:22:15,040 --> 03:22:16,120 UNTIL I SEE FROSTBITE. 6178 03:22:16,120 --> 03:22:18,480 I DON'T KNOW OFTEN WHEN TO STOP 6179 03:22:18,480 --> 03:22:19,600 OR BACK DOWN. 6180 03:22:19,600 --> 03:22:22,880 I DON'T KNOW REALLY WHEN TO READ 6181 03:22:22,880 --> 03:22:25,400 MY OWN BODY. 6182 03:22:25,400 --> 03:22:29,520 PEOPLE SAY THINGS ABOUT SENSING 6183 03:22:29,520 --> 03:22:31,720 THINGS IN THEIR BODIES, AND 6184 03:22:31,720 --> 03:22:34,000 THOSE WORDS ARE KIND OF ALIEN TO 6185 03:22:34,000 --> 03:22:34,320 THEM. 6186 03:22:34,320 --> 03:22:36,840 WHEN I WAS 50, THAT DIDN'T SEEM 6187 03:22:36,840 --> 03:22:37,920 TO MATTER VERY MUCH. 6188 03:22:37,920 --> 03:22:41,000 BUT IF I MISS MEDICATIONS NOW, 6189 03:22:41,000 --> 03:22:42,280 BECAUSE I'M NOT MINDFUL OF THAT, 6190 03:22:42,280 --> 03:22:43,720 I MAY DIE. 6191 03:22:43,720 --> 03:22:47,120 IF I OVERSTRESS MYSELF NOW, I 6192 03:22:47,120 --> 03:22:49,880 CAN SUFFER INJURIES THAT I CAN'T 6193 03:22:49,880 --> 03:22:50,840 RECOVER FROM. 6194 03:22:50,840 --> 03:22:54,440 EVERY YEAR, MISTAKES FOR FAILING 6195 03:22:54,440 --> 03:22:59,920 TO RECOGNIZE MY BODY BODY'S CUEW 6196 03:22:59,920 --> 03:23:00,560 HIGHER. 6197 03:23:00,560 --> 03:23:01,960 ISOLATION IS A RECOGNIZED 6198 03:23:01,960 --> 03:23:03,280 PROBLEM FOR AUTISTIC PEOPLE AND 6199 03:23:03,280 --> 03:23:05,000 IT'S WORSE IN OLD AGE. 6200 03:23:05,000 --> 03:23:06,680 HOW MANY PEOPLE LIKE ME, 6201 03:23:06,680 --> 03:23:08,080 THEREFORE, DIE ALONE BECAUSE 6202 03:23:08,080 --> 03:23:09,840 THEY'RE OUT OF TOUCH WITH THEIR 6203 03:23:09,840 --> 03:23:12,560 BODIES AND THEIR NEEDS, NO ONE 6204 03:23:12,560 --> 03:23:14,040 IS TAKING CARE OF THEM, AND THEY 6205 03:23:14,040 --> 03:23:15,480 MAKE A MISTAKE? 6206 03:23:15,480 --> 03:23:19,560 NO ONE KNOWS. 6207 03:23:19,560 --> 03:23:21,480 GROWING OLDER, I FEEL I'VE 6208 03:23:21,480 --> 03:23:22,360 GOTTEN MORE AUTISTIC. 6209 03:23:22,360 --> 03:23:25,200 THE SAME CAN BE SAID FOR MANY OF 6210 03:23:25,200 --> 03:23:27,040 MY AUTISTIC FRIENDS. 6211 03:23:27,040 --> 03:23:30,120 WE ARE MORE INCLINED TOWARD 6212 03:23:30,120 --> 03:23:30,760 BEING ALONE. 6213 03:23:30,760 --> 03:23:32,920 WE ARE MORE ISOLATED. 6214 03:23:32,920 --> 03:23:36,640 PERHAPS WE ARE ISOLATING 6215 03:23:36,640 --> 03:23:37,400 OURSELVES. 6216 03:23:37,400 --> 03:23:38,800 TICKS AND MANNERISMS THAT WERE 6217 03:23:38,800 --> 03:23:40,880 LONG LOST SEEM TO BE RESURFACING 6218 03:23:40,880 --> 03:23:41,840 IN ME. 6219 03:23:41,840 --> 03:23:44,040 I'M LESS MINDFUL OF THE NEED TO 6220 03:23:44,040 --> 03:23:45,800 LOOK AT OTHER PEOPLE, AND I 6221 03:23:45,800 --> 03:23:48,440 WOULD SAY MY SOCIAL SKILLS HAVE 6222 03:23:48,440 --> 03:23:52,440 SLIPPED. 6223 03:23:52,440 --> 03:23:53,000 THAT'S CONTRARY TO MY 6224 03:23:53,000 --> 03:23:54,640 OBSERVATIONS FROM A DECADE AGO 6225 03:23:54,640 --> 03:23:58,560 AND THE FINDINGS OF A VARIETY OF 6226 03:23:58,560 --> 03:24:00,080 STUDIES WHICH FOUND THAT PEOPLE 6227 03:24:00,080 --> 03:24:02,360 WITH GOOD COGNITIVE ABILITY TEND 6228 03:24:02,360 --> 03:24:04,800 TO SEE THEIR DISABILITIES 6229 03:24:04,800 --> 03:24:08,080 DIMINISH WITH AGE. 6230 03:24:08,080 --> 03:24:09,600 THAT WAS CERTAINLY TRUE FOR ME 6231 03:24:09,600 --> 03:24:10,120 UP TO A POINT. 6232 03:24:10,120 --> 03:24:11,480 10 YEARS AGO, I OBSERVED HOW 6233 03:24:11,480 --> 03:24:13,040 MUCH MORE SUCCESSFUL I WAS IN 6234 03:24:13,040 --> 03:24:16,640 SOCIAL SITUATIONS THAN, SAY, AT 6235 03:24:16,640 --> 03:24:17,040 AGE 20. 6236 03:24:17,040 --> 03:24:18,400 I SAW HOW MUCH BENEFIT I GAINED 6237 03:24:18,400 --> 03:24:20,920 FROM LEARNING WHAT MY AUTISTIC 6238 03:24:20,920 --> 03:24:22,280 STRENGTHS ARE, AND HOW TO USE 6239 03:24:22,280 --> 03:24:23,520 THEM TO BEST ADVANTAGE, 6240 03:24:23,520 --> 03:24:24,720 SOMETHING THAT COMES FROM LIFE 6241 03:24:24,720 --> 03:24:26,800 EXPERIENCE. 6242 03:24:26,800 --> 03:24:29,800 THOSE THINGS ARE STILL TRUE 6243 03:24:29,800 --> 03:24:30,000 TODAY. 6244 03:24:30,000 --> 03:24:31,080 BUT THEY'RE LESS MEANINGFUL. 6245 03:24:31,080 --> 03:24:32,520 I'M NOT AS INCLINED TO BE 6246 03:24:32,520 --> 03:24:32,920 SOCIAL. 6247 03:24:32,920 --> 03:24:35,760 I'M MORE AT HOME BEING ALONE. 6248 03:24:35,760 --> 03:24:37,520 MY AUTISTIC TECHNICAL ABILITIES 6249 03:24:37,520 --> 03:24:40,240 BROUGHT ME SUCCESS IN MANY 6250 03:24:40,240 --> 03:24:41,960 DOMAINS: ENGINEERING, MUSIC, 6251 03:24:41,960 --> 03:24:43,280 PHOTOGRAPHY, WRITING. 6252 03:24:43,280 --> 03:24:45,160 BUT I DOUBT I CAN REPLICATE 6253 03:24:45,160 --> 03:24:47,440 THOSE SUCCESSES WITH MY CURRENT 6254 03:24:47,440 --> 03:24:48,400 COGNITIVE ABILITIES. 6255 03:24:48,400 --> 03:24:50,920 I'M NOT AS FLEXIBLE, I'M NOT AS 6256 03:24:50,920 --> 03:24:53,840 PATIENT, NOT AS FULL OF NEW 6257 03:24:53,840 --> 03:24:54,280 IDEAS. 6258 03:24:54,280 --> 03:24:59,200 I FEEL LIKE I'M NOT AS SHARP. 6259 03:24:59,200 --> 03:25:00,240 NOW, ALL THOSE SAME FEELINGS 6260 03:25:00,240 --> 03:25:02,600 MIGHT WELL BE EXPRESSED BY ANY 6261 03:25:02,600 --> 03:25:03,040 AGING PERSON. 6262 03:25:03,040 --> 03:25:05,720 WE HEAR OF SENIOR MOMENTS, 6263 03:25:05,720 --> 03:25:06,200 SLOWING DOWN. 6264 03:25:06,200 --> 03:25:09,240 I EXPERIENCE THAT. 6265 03:25:09,240 --> 03:25:10,240 ARE AUTISTIC PEOPLE DIFFERENT IN 6266 03:25:10,240 --> 03:25:10,800 THAT REGARD? 6267 03:25:10,800 --> 03:25:12,760 I DON'T THINK ANYONE KNOWS. 6268 03:25:12,760 --> 03:25:15,480 BUT AS AN AUTISTIC PERSON, I 6269 03:25:15,480 --> 03:25:17,560 FIND THOSE CHANGES IN ME, WHICH 6270 03:25:17,560 --> 03:25:20,600 HAS HAPPENED SINCE 60, 6271 03:25:20,600 --> 03:25:21,480 TROUBLING. 6272 03:25:21,480 --> 03:25:23,000 AN OLD FRIEND WITH AUTISM HAD 6273 03:25:23,000 --> 03:25:23,880 ANOTHER PART OF THE ANSWER. 6274 03:25:23,880 --> 03:25:28,360 HE SAID TO ME, YOU KNOW, WHEN I 6275 03:25:28,360 --> 03:25:31,080 HIT 55, IT FELT LIKE MY ADHD 6276 03:25:31,080 --> 03:25:33,120 FUELED ENERGY JUST RAN OUT. 6277 03:25:33,120 --> 03:25:34,480 I NEVER REALLY THOUGHT OF IT 6278 03:25:34,480 --> 03:25:35,440 THAT WAY, BUT THAT'S VERY MUCH 6279 03:25:35,440 --> 03:25:37,200 HOW IT FEELS FOR ME. 6280 03:25:37,200 --> 03:25:39,960 10 YEARS AGO, WHEN THOSE OF YOU 6281 03:25:39,960 --> 03:25:40,920 WHO SERVED WITH ME ON THE 6282 03:25:40,920 --> 03:25:43,000 COMMITTEE BEFORE, YOU MAY 6283 03:25:43,000 --> 03:25:44,720 REMEMBER THIS, I SERVED ON THIS 6284 03:25:44,720 --> 03:25:48,240 COMMITTEE, I SERVED ON NSAR'S 6285 03:25:48,240 --> 03:25:52,160 BOARD, I HELD TWO TEACHING 6286 03:25:52,160 --> 03:25:53,880 APPOINTMENTS, 25 SPEAKING 6287 03:25:53,880 --> 03:25:54,600 ENGAGEMENTS AROUND THE YEAR AND 6288 03:25:54,600 --> 03:25:56,440 I STILL HAD TIME TO RUN MY 6289 03:25:56,440 --> 03:26:00,040 AUTOMOBILE BUSINESS IN 6290 03:26:00,040 --> 03:26:00,400 MASSACHUSETTS. 6291 03:26:00,400 --> 03:26:04,320 LOOKING BACK, IT WAS SURELY -- 6292 03:26:04,320 --> 03:26:05,000 LET'S SEE. 6293 03:26:05,000 --> 03:26:06,640 I SEE IT SAYS THE HOST HAS 6294 03:26:06,640 --> 03:26:08,680 STOPPED THE VIDEO FEED. 6295 03:26:08,680 --> 03:26:10,120 ARE WE STILL CONNECTED? 6296 03:26:10,120 --> 03:26:11,720 >>YOU ARE STILL CONNECTED. 6297 03:26:11,720 --> 03:26:12,600 >>IT LOOKS GOOD. 6298 03:26:12,600 --> 03:26:13,320 >>OKAY. 6299 03:26:13,320 --> 03:26:14,600 ALL RIGHT. 6300 03:26:14,600 --> 03:26:15,600 SO -- ALL RIGHT. 6301 03:26:15,600 --> 03:26:16,480 NOW THE VIDEO STARTED. 6302 03:26:16,480 --> 03:26:18,000 ALL RIGHT. 6303 03:26:18,000 --> 03:26:23,880 SO ANYWAY, LOOKING BACK, I CAN 6304 03:26:23,880 --> 03:26:27,040 SEE THAT THAT WAS A GREAT 6305 03:26:27,040 --> 03:26:29,800 EXAMPLE OF ADHD-FUELED ENERGY 6306 03:26:29,800 --> 03:26:31,520 EMPOWERING ME. 6307 03:26:31,520 --> 03:26:33,680 IT CERTAINLY KEPT ME GOING, AND 6308 03:26:33,680 --> 03:26:36,000 IN MY EARLY 60s, IT JUST KIND 6309 03:26:36,000 --> 03:26:38,840 OF WENT AWAY. 6310 03:26:38,840 --> 03:26:41,560 IN TERMS OF ACCOMPLISHMENT, MY 6311 03:26:41,560 --> 03:26:43,200 ABILITY TO ACCOMPLISH THINGS, TO 6312 03:26:43,200 --> 03:26:44,760 ME, THAT FEELS LIKE A GREAT 6313 03:26:44,760 --> 03:26:44,960 LOSS. 6314 03:26:44,960 --> 03:26:48,360 I CAN'T DO ALL THE THINGS I USED 6315 03:26:48,360 --> 03:26:49,680 TO TAKE FOR GRANTED BEING ABLE 6316 03:26:49,680 --> 03:26:50,440 TO DO. 6317 03:26:50,440 --> 03:26:52,400 IF I LOOK AT THE DIVERSE RANGE 6318 03:26:52,400 --> 03:26:55,360 OF THINGS I DID IN 2017, FIVE 6319 03:26:55,360 --> 03:26:56,880 YEARS AGO, AND THE RANGE OF 6320 03:26:56,880 --> 03:26:58,920 THINGS I CAN DO TODAY, IT IS 6321 03:26:58,920 --> 03:27:05,000 MUCH MORE LIMITED. 6322 03:27:05,000 --> 03:27:05,960 THAT IS NOT BY CHOICE. 6323 03:27:05,960 --> 03:27:07,160 I JUST WANT DO IT ANYMORE. 6324 03:27:07,160 --> 03:27:11,280 MY ABILITY TO JUGGLE DISPARATE 6325 03:27:11,280 --> 03:27:12,280 COGNITIVE TASKS AND GET THEM ALL 6326 03:27:12,280 --> 03:27:14,280 DONE WAS CONSIDERABLY BETTER 6327 03:27:14,280 --> 03:27:16,400 THAN AVERAGE, AND THAT'S NO 6328 03:27:16,400 --> 03:27:19,080 LONGER TRUE. 6329 03:27:19,080 --> 03:27:21,560 GIVEN THAT THAT WAS AN AUTISTIC 6330 03:27:21,560 --> 03:27:23,200 ABILITY, IT IS NOT A 6331 03:27:23,200 --> 03:27:25,400 NEUROTYPICAL ABILITY, IT'S 6332 03:27:25,400 --> 03:27:28,040 CERTAINLY FAIR TO ASK, IS THAT A 6333 03:27:28,040 --> 03:27:30,400 PENALTY I PAY AS AN AUTISTIC 6334 03:27:30,400 --> 03:27:31,320 PERSON GETTING OLDER? 6335 03:27:31,320 --> 03:27:33,000 10 YEARS AGO, I WAS CONFIDENT 6336 03:27:33,000 --> 03:27:35,200 AND FULL OF ENERGY. 6337 03:27:35,200 --> 03:27:38,040 NOW, I AM ANXIOUS, WORRIED, AND 6338 03:27:38,040 --> 03:27:40,880 CONSTANTLY TIRED. 6339 03:27:40,880 --> 03:27:42,320 THERE'S NO QUESTION MY ANXIETY 6340 03:27:42,320 --> 03:27:44,280 HAS INCREASED THESE PAST FEW 6341 03:27:44,280 --> 03:27:45,480 YEARS, AND IS THAT AUTISM, IS IT 6342 03:27:45,480 --> 03:27:47,840 NATURAL AGING, IS IT EVEN A SIDE 6343 03:27:47,840 --> 03:27:48,880 EFFECT OF COVID? 6344 03:27:48,880 --> 03:27:50,280 THERE HAVE BEEN MANY ARTICLES 6345 03:27:50,280 --> 03:27:50,640 ABOUT THAT. 6346 03:27:50,640 --> 03:27:52,040 I DON'T KNOW. 6347 03:27:52,040 --> 03:27:55,440 BUT BEFORE COVID, I KNEW A 6348 03:27:55,440 --> 03:27:57,280 NUMBER OF OLDER YOU A TIS TICS 6349 03:27:57,280 --> 03:28:00,360 WHO BECAME MORE ANXIOUS AS THEY 6350 03:28:00,360 --> 03:28:01,320 AGED. 6351 03:28:01,320 --> 03:28:03,200 AT THE NSAR CONFERENCES WHERE I 6352 03:28:03,200 --> 03:28:04,800 SAW OLDER AUTISTIC FOLKS FROM 6353 03:28:04,800 --> 03:28:08,000 AROUND THE WORLD, I HAD MANY 6354 03:28:08,000 --> 03:28:09,840 FRIENDS THAT I SAW BECOME 6355 03:28:09,840 --> 03:28:14,200 PARALYZED BY ANXIETY AS THEY GOT 6356 03:28:14,200 --> 03:28:14,840 OLDER. 6357 03:28:14,840 --> 03:28:16,640 I FEEL THAT IS A SERIOUS AND 6358 03:28:16,640 --> 03:28:19,680 OVERLOOKED PROBLEM IN AUTISTIC 6359 03:28:19,680 --> 03:28:20,880 PEOPLE WITH OTHERWISE GOOD 6360 03:28:20,880 --> 03:28:21,880 COGNITIVE FUNCTION, AND I FEEL 6361 03:28:21,880 --> 03:28:24,520 THAT IT WORSENS WITH AGE, IF 6362 03:28:24,520 --> 03:28:28,120 THOSE EXAMPLES ARE A GUIDE. 6363 03:28:28,120 --> 03:28:31,160 AND I WILL ALSO SAY THAT FOR 6364 03:28:31,160 --> 03:28:33,240 PEOPLE WHO SAY, WELL, JOHN, YOUR 6365 03:28:33,240 --> 03:28:34,880 LIFE EXPERIENCE IS JUST YOU AND 6366 03:28:34,880 --> 03:28:35,520 ALL AUTISTIC PEOPLE ARE 6367 03:28:35,520 --> 03:28:35,840 DIFFERENT. 6368 03:28:35,840 --> 03:28:37,480 I'VE HEARD ALL THAT BEFORE, AND 6369 03:28:37,480 --> 03:28:39,960 AS YOU KNOW, I'VE PROBABLY 6370 03:28:39,960 --> 03:28:41,280 TALKED TO MORE AUTISTIC PEOPLE 6371 03:28:41,280 --> 03:28:43,280 IN MY LIFE THAN MOST CLINICIANS 6372 03:28:43,280 --> 03:28:47,120 HAVE AT THIS POINT, AND I HAVE 6373 03:28:47,120 --> 03:28:47,880 CERTAINLY HAD THOUSANDS AND 6374 03:28:47,880 --> 03:28:50,840 THOUSANDS OF PEOPLE WRITE ME 6375 03:28:50,840 --> 03:28:52,600 OVER HAVING SIMILAR EXPERIENCES 6376 03:28:52,600 --> 03:28:54,240 AS I'VE CHARACTERIZED IN MY 6377 03:28:54,240 --> 03:28:57,160 BOOKS AND WRITING. 6378 03:28:57,160 --> 03:29:00,560 AND I THINK THAT THESE KINDS OF 6379 03:29:00,560 --> 03:29:04,080 THINGS MAY BE MUCH MORE COMMON 6380 03:29:04,080 --> 03:29:06,440 THAN WE KNOW, AND THEY ARE UNDER 6381 03:29:06,440 --> 03:29:07,880 THE RADAR BECAUSE THERE AREN'T 6382 03:29:07,880 --> 03:29:10,200 THAT MANY AUTISTIC ADULTS OF MY 6383 03:29:10,200 --> 03:29:13,360 AGE SPEAKING OUT. 6384 03:29:13,360 --> 03:29:16,600 SO ANYWAY, I'VE JUST ENUMERATED 6385 03:29:16,600 --> 03:29:18,040 SOME WAYS IN WHICH IT FEELS LIKE 6386 03:29:18,040 --> 03:29:20,440 I'M DIMINISHED WITH AGE. 6387 03:29:20,440 --> 03:29:21,640 LUCKILY, I'M SURROUNDED BY 6388 03:29:21,640 --> 03:29:23,200 PEOPLE WHO CARE ABOUT ME AND 6389 03:29:23,200 --> 03:29:25,080 LOOK OUT FOR ME. 6390 03:29:25,080 --> 03:29:26,920 WITHOUT THAT, IN ISOLATION, I 6391 03:29:26,920 --> 03:29:28,120 COULD WELL IMAGINE THAT I WOULD 6392 03:29:28,120 --> 03:29:30,080 COME TO THE RATIONAL DECISION 6393 03:29:30,080 --> 03:29:32,520 THAT SUICIDE IS MY BEST OPTION, 6394 03:29:32,520 --> 03:29:33,800 AS THERE'S NOTHING BUT PAIN TO 6395 03:29:33,800 --> 03:29:38,160 LOOK FORWARD TO. 6396 03:29:38,160 --> 03:29:39,600 AS SOMEONE WHO'S LIVED WITH 6397 03:29:39,600 --> 03:29:42,120 DEPRESSION AND ANXIETY MY LIFE 6398 03:29:42,120 --> 03:29:43,440 AND BEEN IN THAT PLACE MORE THAN 6399 03:29:43,440 --> 03:29:45,040 ONCE, I REALLY URGE YOU TO TAKE 6400 03:29:45,040 --> 03:29:45,400 THAT SERIOUSLY. 6401 03:29:45,400 --> 03:29:47,160 IF A PERSON LIKE ME SEEMINGLY 6402 03:29:47,160 --> 03:29:49,560 WELL CONNECTED, ARTICULATE AND 6403 03:29:49,560 --> 03:29:51,040 CAPABLE CAN FEEL THAT THAT'S A 6404 03:29:51,040 --> 03:29:54,560 REASONABLE OPTION, HOW MANY OF 6405 03:29:54,560 --> 03:29:57,760 MY FELLOW AUTISTICS WHO DON'T 6406 03:29:57,760 --> 03:29:59,600 HAVE SOME OF THE ADVANTAGES THAT 6407 03:29:59,600 --> 03:30:06,280 I'VE HAD CHOOSE THAT WAY OUT? 6408 03:30:06,280 --> 03:30:08,560 IN MY LAST TIME ON NSAR'S BOARD, 6409 03:30:08,560 --> 03:30:10,320 WE WORKED ON A POLICY BRIEF ON 6410 03:30:10,320 --> 03:30:14,000 SUICIDE, AND I THINK THAT'S A 6411 03:30:14,000 --> 03:30:14,680 BIG CONCERN. 6412 03:30:14,680 --> 03:30:16,840 THE PROBLEM TO SOLVE IS A 6413 03:30:16,840 --> 03:30:18,040 SOCIETAL ONE, NOT AN INDIVIDUAL 6414 03:30:18,040 --> 03:30:19,680 ISSUE. 6415 03:30:19,680 --> 03:30:22,000 IN EARLIER IACC MEETING, WE 6416 03:30:22,000 --> 03:30:23,040 DISCUSSED THE EMERGING 6417 03:30:23,040 --> 03:30:24,640 REALIZATION THAT INTELLECTUALLY 6418 03:30:24,640 --> 03:30:26,920 DISABLED AND NON-SPEAKING 6419 03:30:26,920 --> 03:30:31,920 AUTISTIC PEOPLE MAY HAVE AS MUCH 6420 03:30:31,920 --> 03:30:34,040 OF SO YOU SIGH DAL IDEATION AS 6421 03:30:34,040 --> 03:30:35,080 NON-INTELLECTUALLY DISABLED YOU 6422 03:30:35,080 --> 03:30:35,400 A TIS TICS. 6423 03:30:35,400 --> 03:30:37,640 IT'S A LIFE-LONG RISK FOR US NO 6424 03:30:37,640 --> 03:30:38,720 MATTER WHERE WE FALL ON THE 6425 03:30:38,720 --> 03:30:40,800 SPECTRUM. 6426 03:30:40,800 --> 03:30:42,880 A RECENT LABOR DEPARTMENT STUDY 6427 03:30:42,880 --> 03:30:44,600 FOUND 7% OF AMERICANS WERE SELF 6428 03:30:44,600 --> 03:30:46,040 EMPLOYED. 6429 03:30:46,040 --> 03:30:48,240 A DARTMOUTH STUDY OF DESIRE SAID 6430 03:30:48,240 --> 03:30:51,960 70% WANT TO BE. 6431 03:30:51,960 --> 03:30:52,960 IT'S A LITTLE MISLEADING. 6432 03:30:52,960 --> 03:30:56,240 IN THE CASE OF MINE AND MANY YOU 6433 03:30:56,240 --> 03:30:58,240 A TIS TICS, I'VE BEEN SELF 6434 03:30:58,240 --> 03:30:59,280 EMPLOYED MOST OF MY LIFE BECAUSE 6435 03:30:59,280 --> 03:31:00,120 I DIDN'T HAVE A CHOICE. 6436 03:31:00,120 --> 03:31:02,440 I DIDN'T HAVE THE SOCIAL SKILLS 6437 03:31:02,440 --> 03:31:04,720 TO NAVIGATE WORK LIFE AND 6438 03:31:04,720 --> 03:31:05,080 ORGANIZATIONS. 6439 03:31:05,080 --> 03:31:06,360 A SIDE OF LIFE STATISTICS DON'T 6440 03:31:06,360 --> 03:31:07,360 CAPTURE BUT WE CAN SEE IT 6441 03:31:07,360 --> 03:31:08,000 ANOTHER WAY. 6442 03:31:08,000 --> 03:31:13,480 THE PREVALENCE OF AUTISM AND 6443 03:31:13,480 --> 03:31:14,560 NEUROMENTAL DISORDERS AMONG THE 6444 03:31:14,560 --> 03:31:15,560 HOMELESS AND INCARCERATED IS 6445 03:31:15,560 --> 03:31:17,880 WELL ABOVE THE PREVALENCE IN THE 6446 03:31:17,880 --> 03:31:18,960 GENERAL POPULATION. 6447 03:31:18,960 --> 03:31:22,360 OUTSIDE OF THAT, BRUGA AND OTHER 6448 03:31:22,360 --> 03:31:23,880 FOLLOW-ON STUDIES SHOWED THAT 6449 03:31:23,880 --> 03:31:26,160 OLDER YOU A TIS TICS AS A GROUP 6450 03:31:26,160 --> 03:31:27,920 END UP WORSE OFF THAN THE 6451 03:31:27,920 --> 03:31:31,240 GENERAL POPULATION BY VARIOUS 6452 03:31:31,240 --> 03:31:33,000 MEASURES OF ATTAINMENT. 6453 03:31:33,000 --> 03:31:34,000 GIVEN THE CONTRIBUTIONS WE MAKE 6454 03:31:34,000 --> 03:31:37,480 TO THE WORLD, I THINK THAT'S 6455 03:31:37,480 --> 03:31:38,240 REALLY WRONG. 6456 03:31:38,240 --> 03:31:39,680 AT 55, I FELT LIKE I COULD KEEP 6457 03:31:39,680 --> 03:31:41,440 WORKING FOREVER. 6458 03:31:41,440 --> 03:31:42,840 AT 65, I FEEL LIKE I HAVE NO 6459 03:31:42,840 --> 03:31:44,200 CHOICE BUT TO WORK FOREVER. 6460 03:31:44,200 --> 03:31:48,000 THOSE ARE REALLY DIFFERENT 6461 03:31:48,000 --> 03:31:48,840 PERSPECTIVES. 6462 03:31:48,840 --> 03:31:51,720 I AND MOST OLDER AUTISTICS HAVE 6463 03:31:51,720 --> 03:31:54,800 ABC ROUTELY NO ACADEMIC, 6464 03:31:54,800 --> 03:31:55,960 GOVERNMENT OR -- RETIREMENT 6465 03:31:55,960 --> 03:31:56,520 PLAN. 6466 03:31:56,520 --> 03:31:58,000 I'M NOT DISCOUNTING SOCIAL 6467 03:31:58,000 --> 03:31:59,320 SECURITY AND DISABILITY, I'M 6468 03:31:59,320 --> 03:32:00,000 TALKING ABOUT RETIREMENT FUNDING 6469 03:32:00,000 --> 03:32:01,000 THAT PROVIDES A DECENT STANDARD 6470 03:32:01,000 --> 03:32:03,760 OF LIVING IN RETIREMENT AS MOST 6471 03:32:03,760 --> 03:32:05,200 WORKING PROFESSIONALS IN AMERICA 6472 03:32:05,200 --> 03:32:07,920 CAN EXPECT. 6473 03:32:07,920 --> 03:32:09,240 THE ONLY RETIREMENT I HAVE IS 6474 03:32:09,240 --> 03:32:11,080 WHAT I MAKE BY INVESTING AND 6475 03:32:11,080 --> 03:32:12,080 BUILDING ASSETS. 6476 03:32:12,080 --> 03:32:14,080 IT EASY FOR ANY OF YOU TO SAY, 6477 03:32:14,080 --> 03:32:16,080 WELL, THAT'S JUST THE SAME AS 6478 03:32:16,080 --> 03:32:17,560 ME, BUT IT'S NOT. 6479 03:32:17,560 --> 03:32:19,520 THOSE OF YOU WITH GOVERNMENT 6480 03:32:19,520 --> 03:32:21,040 TENURED ACADEMIC OR CORPORATE 6481 03:32:21,040 --> 03:32:22,280 JOBS GET YOUR RETIREMENT 6482 03:32:22,280 --> 03:32:23,240 SECURITY BY BEING PART OF A 6483 03:32:23,240 --> 03:32:24,680 SOCIAL SYSTEM WHERE YOU'RE 6484 03:32:24,680 --> 03:32:25,040 EMPLOYED. 6485 03:32:25,040 --> 03:32:26,160 AS LONG AS YOU REMAIN IN THAT 6486 03:32:26,160 --> 03:32:27,400 SYSTEM FOR THE DURATION, IT WILL 6487 03:32:27,400 --> 03:32:28,520 TAKE CARE OF YOU. 6488 03:32:28,520 --> 03:32:31,120 I KNOW OF NO STATISTICS ON THIS, 6489 03:32:31,120 --> 03:32:33,000 BUT I SUSPECT THE NUMBER OF 6490 03:32:33,000 --> 03:32:35,080 AUTISTIC ADULTS WHO SUCCESSFULLY 6491 03:32:35,080 --> 03:32:37,400 RUN THAT SOCIAL SKILLS GAUNTLET 6492 03:32:37,400 --> 03:32:39,600 FOR THE 30-SOME YEARS TO QUALIFY 6493 03:32:39,600 --> 03:32:42,960 FOR PENSION IS VERY SMALL. 6494 03:32:42,960 --> 03:32:44,200 REFLECTING ON THAT, THOUGH, THE 6495 03:32:44,200 --> 03:32:45,400 ISSUE IS MORE THAN MONEY. 6496 03:32:45,400 --> 03:32:46,680 NOW DON'T GET ME WRONG, MONEY 6497 03:32:46,680 --> 03:32:47,680 FOR RETIREMENT SECURITY IS 6498 03:32:47,680 --> 03:32:50,400 IMPORTANT. 6499 03:32:50,400 --> 03:32:53,640 THAT'S SOMETHING THAT I COULDN'T 6500 03:32:53,640 --> 03:32:55,240 SEE WHEN I WAS YOUNGER. 6501 03:32:55,240 --> 03:32:56,760 THE SOCIAL NETWORK AFFORDED BY 6502 03:32:56,760 --> 03:32:59,720 EMPLOYMENT IS EVEN MORE 6503 03:32:59,720 --> 03:32:59,960 IMPORTANT. 6504 03:32:59,960 --> 03:33:01,800 WORK IS THE PLACE WHERE SO MANY 6505 03:33:01,800 --> 03:33:03,880 PEOPLE MAKE FRIENDS, FIND LIFE 6506 03:33:03,880 --> 03:33:05,080 PARTNERS, DISCOVER NEW INTERESTS 6507 03:33:05,080 --> 03:33:07,280 AND JOIN A SOCIAL WEB THAT 6508 03:33:07,280 --> 03:33:08,960 NURTURES AND PROTECTS THEM IN 6509 03:33:08,960 --> 03:33:10,680 TIMES OF STRESS. 6510 03:33:10,680 --> 03:33:12,000 IN THAT RESPECT, THE WORKPLACE 6511 03:33:12,000 --> 03:33:13,520 IS MORE THAN JUST A JOB. 6512 03:33:13,520 --> 03:33:15,240 YEARS AGO, WHEN I TRIED TO FIT 6513 03:33:15,240 --> 03:33:18,240 IN TO A LARGE COMPANY WITHOUT 6514 03:33:18,240 --> 03:33:20,480 SUCCESS, I KIND OF SNEERED AT 6515 03:33:20,480 --> 03:33:23,400 PEOPLE STANDING AROUND THE 6516 03:33:23,400 --> 03:33:24,800 PHOTOCOPIERS GOSSIPPING AND I 6517 03:33:24,800 --> 03:33:26,520 THOUGHT WHY AREN'T THEY WORKING, 6518 03:33:26,520 --> 03:33:27,320 THEY'RE WASTING TIME. 6519 03:33:27,320 --> 03:33:29,320 BUT I NOW SEE THAT GOSSIP 6520 03:33:29,320 --> 03:33:30,280 ACTUALLY NURTURED THOSE PEOPLE 6521 03:33:30,280 --> 03:33:32,040 AND WAS A VALUABLE SOCIAL 6522 03:33:32,040 --> 03:33:32,920 SUPPORT WHICH I NEVER RECEIVED 6523 03:33:32,920 --> 03:33:34,880 BECAUSE OF MY AUTISTIC 6524 03:33:34,880 --> 03:33:36,400 DISCONNECTION. 6525 03:33:36,400 --> 03:33:38,200 IT'S FAIR TO SAY, DID THEY 6526 03:33:38,200 --> 03:33:40,160 EXCLUDE ME OR DID I EXCLUDE 6527 03:33:40,160 --> 03:33:40,600 MYSELF? 6528 03:33:40,600 --> 03:33:43,640 I PROBABLY DID EXCLUDE MYSELF. 6529 03:33:43,640 --> 03:33:44,920 BUT IT DOESN'T CHANGE THE FACT 6530 03:33:44,920 --> 03:33:46,200 THAT IT'S A VERY REAL PROBLEM 6531 03:33:46,200 --> 03:33:48,040 THAT WORSENS WITH AGE. 6532 03:33:48,040 --> 03:33:50,160 TO HELP AUTISTIC PEOPLE FIT IN 6533 03:33:50,160 --> 03:33:51,760 TO WORKPLACES AND BECOME MORE 6534 03:33:51,760 --> 03:33:56,120 SOCIALLY CONNECTED, I WOULD 6535 03:33:56,120 --> 03:33:57,320 SUGGEST THIS THING THAT I THINK 6536 03:33:57,320 --> 03:33:59,000 EVERY AUTISTIC PERSON LISTENING 6537 03:33:59,000 --> 03:34:00,840 WILL AGREE WITH: FIX THE 6538 03:34:00,840 --> 03:34:02,360 UGLINESS IN OUR SCHOOLS. 6539 03:34:02,360 --> 03:34:04,360 THAT'S A TALL ORDER, BUT THAT 6540 03:34:04,360 --> 03:34:06,320 UGLINESS NOT ONLY LEAVES 6541 03:34:06,320 --> 03:34:09,360 MILLIONS LIKE ME WITH PSYCHIC 6542 03:34:09,360 --> 03:34:10,920 INJURIES AND THE RESULTANT 6543 03:34:10,920 --> 03:34:12,800 DISABILITIES THAT LAST A 6544 03:34:12,800 --> 03:34:13,360 LIFETIME. 6545 03:34:13,360 --> 03:34:14,880 IT'S THE BREEDING GROUND FOR 6546 03:34:14,880 --> 03:34:16,600 TODAY'S PROP OF SCHOOL SHOOTERS 6547 03:34:16,600 --> 03:34:18,360 AND OTHERS WHO POSE A FAR 6548 03:34:18,360 --> 03:34:20,040 GREATER THREAT TO SOCIETY THAN 6549 03:34:20,040 --> 03:34:23,440 PEOPLE LIKE ME. 6550 03:34:23,440 --> 03:34:24,440 OUR MISTREATMENT AS SCHOOL 6551 03:34:24,440 --> 03:34:26,520 CHILDREN THROWS UP LIFELONG 6552 03:34:26,520 --> 03:34:28,680 BARRIERS TO OUR SUCCESS AT WORK 6553 03:34:28,680 --> 03:34:30,000 AND OUR ASSOCIATED SOCIAL 6554 03:34:30,000 --> 03:34:31,320 SUCCESS. 6555 03:34:31,320 --> 03:34:33,440 THAT STIGMA OF CHILDHOOD 6556 03:34:33,440 --> 03:34:35,720 REJECTION FOLLOWS US INTO 6557 03:34:35,720 --> 03:34:37,160 ADULTHOOD, WHERE IT JOINS WITH 6558 03:34:37,160 --> 03:34:39,560 OUR AUTISTIC SOCIAL DISABILITIES 6559 03:34:39,560 --> 03:34:41,520 TO CAUSE ENDLESS MISSTEPS IN OUR 6560 03:34:41,520 --> 03:34:44,240 EFFORTS FOR SOCIAL ENGAGEMENT, 6561 03:34:44,240 --> 03:34:49,400 AND I SUSPECT THAT WH WHEN YOU T 6562 03:34:49,400 --> 03:34:52,600 TO MY AGE, A LIFETIME OF THOSE 6563 03:34:52,600 --> 03:34:53,680 MISSTEPS COMBINED WITH OUR 6564 03:34:53,680 --> 03:34:56,640 INHERENT AUTISTIC SOCIAL 6565 03:34:56,640 --> 03:34:57,720 DISABILITY REALLY MAKES IT 6566 03:34:57,720 --> 03:34:59,480 HARDER AND HARDER AND HARDER 6567 03:34:59,480 --> 03:35:01,440 UNTIL WE GIVE UP ON CONNECTION. 6568 03:35:01,440 --> 03:35:03,720 AND THAT MAY BE WHY SOME OF US 6569 03:35:03,720 --> 03:35:07,280 ARE MORE ISOLATED AT 65 THAN AT 6570 03:35:07,280 --> 03:35:07,440 55. 6571 03:35:07,440 --> 03:35:09,160 SOME OF US WITHDRAW, SOME OF US 6572 03:35:09,160 --> 03:35:10,360 TURN TO DRINK. 6573 03:35:10,360 --> 03:35:13,000 SOME DO CONNECT AND, YOU KNOW, 6574 03:35:13,000 --> 03:35:15,360 WE'RE LUCKY, BUT WE DO. 6575 03:35:15,360 --> 03:35:16,720 MANY OF US SUCCEED AT SOME LEVEL 6576 03:35:16,720 --> 03:35:19,120 BUT WE LIVE WITH MORE SADNESS, 6577 03:35:19,120 --> 03:35:21,320 ANXIETY AND ISOLATION THAN 6578 03:35:21,320 --> 03:35:22,280 ANYONE WOULD WANT. 6579 03:35:22,280 --> 03:35:23,840 THAT IS TRULY SUFFERING. 6580 03:35:23,840 --> 03:35:26,600 AND I DON'T KNOW OF ANY AUTISTIC 6581 03:35:26,600 --> 03:35:28,800 PERSON WHO WANTS THAT. 6582 03:35:28,800 --> 03:35:29,360 THERE'S NOTHING TO CELEBRATE 6583 03:35:29,360 --> 03:35:31,440 ABOUT THAT SIDE OF AUTISM. 6584 03:35:31,440 --> 03:35:34,680 THERE'S A WHOLE GENERATION OF 6585 03:35:34,680 --> 03:35:35,360 40-PLUS AUTISTIC PEOPLE WHO GREW 6586 03:35:35,360 --> 03:35:36,480 UP WITH NO DIAGNOSIS. 6587 03:35:36,480 --> 03:35:38,480 MANY OF US ARE JUST GOING ALONG, 6588 03:35:38,480 --> 03:35:39,800 AWARE THAT WE'RE DIFFERENT AND 6589 03:35:39,800 --> 03:35:41,840 FEELING THAT WE ARE LESS, WITH 6590 03:35:41,840 --> 03:35:44,560 NO UNDERSTANDING OF NEUROLOGICAL 6591 03:35:44,560 --> 03:35:45,760 DIFFERENCE, HOW WOULD WE SEE 6592 03:35:45,760 --> 03:35:46,360 THINGS DIFFERENTLY? 6593 03:35:46,360 --> 03:35:48,640 THAT'S HOW I LIVED MOST OF MY 6594 03:35:48,640 --> 03:35:49,320 LIFE. 6595 03:35:49,320 --> 03:35:51,160 HAVING TALKED WITH MANY SUCH 6596 03:35:51,160 --> 03:35:52,440 UNDIAGNOSED PEOPLE, I BELIEVE 6597 03:35:52,440 --> 03:35:54,560 THE LAST THING THEY WANT IS FOR 6598 03:35:54,560 --> 03:35:56,320 SOMEONE TO SAY, HEY, YOU'RE 6599 03:35:56,320 --> 03:35:57,200 ACTING AUTISTIC. 6600 03:35:57,200 --> 03:35:58,280 YOU MUST HAVE UNDIAGNOSED 6601 03:35:58,280 --> 03:36:00,400 AUTISM. 6602 03:36:00,400 --> 03:36:01,360 WHEN PRESENTED WITH A PARADIGM 6603 03:36:01,360 --> 03:36:03,520 SHIFT LIKE THAT, THEY REJECT IT 6604 03:36:03,520 --> 03:36:05,400 BECAUSE OF AUTISM'S STIGMA. 6605 03:36:05,400 --> 03:36:09,560 THAT WAS CERTAINLY MY FIRST 6606 03:36:09,560 --> 03:36:10,000 REACTION. 6607 03:36:10,000 --> 03:36:13,520 IN MY CASE, THE THERAPIST HANDED 6608 03:36:13,520 --> 03:36:17,160 ME THE OLD BOOK "ASPERGER'S 6609 03:36:17,160 --> 03:36:18,160 SYNDROME" AND HE SAID REALLY, 6610 03:36:18,160 --> 03:36:23,920 IT'S NOT WHAT YOU THINK, HE 6611 03:36:23,920 --> 03:36:24,920 HIGHLIGHTED PASSAGES THAT 6612 03:36:24,920 --> 03:36:25,200 MATCHED ME. 6613 03:36:25,200 --> 03:36:26,800 BUT EVEN FOR ME, YOU KNOW ME AS 6614 03:36:26,800 --> 03:36:28,080 A CHAMPION OF AUTISTIC PEOPLE 6615 03:36:28,080 --> 03:36:30,120 AND AUTISTIC ABILITIES, THAT WAS 6616 03:36:30,120 --> 03:36:31,680 A VERY HARD THING FOR ME TO 6617 03:36:31,680 --> 03:36:32,120 OVERCOME. 6618 03:36:32,120 --> 03:36:33,880 I SAW IT AS A DISEASE WITH NO 6619 03:36:33,880 --> 03:36:35,040 CURE, THE REASON I WAS A FAILURE 6620 03:36:35,040 --> 03:36:37,040 AND I WOULD NEVER GET BETTER AND 6621 03:36:37,040 --> 03:36:39,400 IT WAS CRUSHING AT FIRST. 6622 03:36:39,400 --> 03:36:40,480 THAT'S NOT HOW DISCOVERY HAS TO 6623 03:36:40,480 --> 03:36:41,360 BE FOR US. 6624 03:36:41,360 --> 03:36:43,040 AND THAT'S WHERE NEURODIVERSITY 6625 03:36:43,040 --> 03:36:45,520 COMES IN, ESPECIALLY FOR US 6626 03:36:45,520 --> 03:36:47,000 OLDER AUTISTICS. 6627 03:36:47,000 --> 03:36:48,880 IF WE'RE PRESENTED WITH A 6628 03:36:48,880 --> 03:36:50,280 NEURODIVERSITY PARADIGM INSTEAD 6629 03:36:50,280 --> 03:36:52,480 OF A MEDICAL DIAGNOSIS, THERE'S 6630 03:36:52,480 --> 03:36:53,920 A CHANCE FOR A FAR BETTER 6631 03:36:53,920 --> 03:36:55,680 OUTCOME TO THOSE CONVERSATIONS. 6632 03:36:55,680 --> 03:36:57,360 HEARING THAT WE HAVE A DIFFERENT 6633 03:36:57,360 --> 03:36:59,880 KIND OF BRAIN IS FUNDAMENTALLY 6634 03:36:59,880 --> 03:37:01,240 DIFFERENT THAN HEARING THAT WE 6635 03:37:01,240 --> 03:37:02,720 ARE DISORDERED. 6636 03:37:02,720 --> 03:37:04,480 WE ARE STRONGER IN SOME WAYS AND 6637 03:37:04,480 --> 03:37:05,320 WEAKER IN OTHERS. 6638 03:37:05,320 --> 03:37:07,160 WE CAN START A CONVERSATION 6639 03:37:07,160 --> 03:37:08,800 ABOUT BALANCE, NOT DEFICITS. 6640 03:37:08,800 --> 03:37:10,880 WE CAN START WITH DIVERSITY AND 6641 03:37:10,880 --> 03:37:12,680 NOT DISORDER. 6642 03:37:12,680 --> 03:37:15,800 I REALLY SEE THIS HAPPEN IN SOME 6643 03:37:15,800 --> 03:37:17,920 WORKPLACES WITH MANY 6644 03:37:17,920 --> 03:37:18,800 NEURODIVERGENT PEOPLE, AND I CAN 6645 03:37:18,800 --> 03:37:20,240 GIVE YOU ONE EXAMPLE. 6646 03:37:20,240 --> 03:37:22,320 SOME OF YOU KNOW THAT I'M THE 6647 03:37:22,320 --> 03:37:24,160 NEURODIVERSITY ADVISOR AT THE 6648 03:37:24,160 --> 03:37:25,560 LAWRENCE LIVERMORE NATIONAL LABS 6649 03:37:25,560 --> 03:37:27,560 UNDER THE DEPARTMENT OF ENERGY. 6650 03:37:27,560 --> 03:37:30,080 THE LAB IS ONE OF THE WORLD'S 6651 03:37:30,080 --> 03:37:32,480 PREMIER SCIENTIFIC INSTITUTIONS. 6652 03:37:32,480 --> 03:37:33,920 ENGINEERS AND SCIENTISTS WORK ON 6653 03:37:33,920 --> 03:37:37,240 SOME OF THE MOST DIFFICULT 6654 03:37:37,240 --> 03:37:38,280 SCIENTIFIC AND TECHNICAL 6655 03:37:38,280 --> 03:37:41,040 CHALLENGES KNOWN TO US. 6656 03:37:41,040 --> 03:37:44,000 SUCCESS THERE OFTEN REQUIRES 6657 03:37:44,000 --> 03:37:45,000 EXTRAORDINARY COGNITIVE GIFTS, 6658 03:37:45,000 --> 03:37:46,840 AND OFTEN THOSE GIFTS ARE 6659 03:37:46,840 --> 03:37:48,400 ACCOMPANIED BY DIMINISHED 6660 03:37:48,400 --> 03:37:49,880 ABILITIES IN OTHER DOMAINS. 6661 03:37:49,880 --> 03:37:51,920 SO MANY BRILLIANT SCIENTISTS AND 6662 03:37:51,920 --> 03:37:53,760 ENGINEERS HAVE TERRIBLE TROUBLE 6663 03:37:53,760 --> 03:37:55,120 WITH HUMAN RELATIONSHIPS, 6664 03:37:55,120 --> 03:37:58,240 WHETHER THAT'S RELATING TO THE 6665 03:37:58,240 --> 03:37:59,520 FINANCE OR HUMAN RESOURCES 6666 03:37:59,520 --> 03:38:00,880 DEPARTMENT AT THE LAB OR 6667 03:38:00,880 --> 03:38:02,080 RELATING TO THEIR FAMILIES OR 6668 03:38:02,080 --> 03:38:04,400 FRIENDS OUTSIDE OF WORK. 6669 03:38:04,400 --> 03:38:06,000 AS AN AUTISTIC PERSON, I SEE 6670 03:38:06,000 --> 03:38:07,680 CLEARLY THAT NEURODIVERSITY IS 6671 03:38:07,680 --> 03:38:08,880 AT THE ROOT OF THAT. 6672 03:38:08,880 --> 03:38:10,520 BUT I WOULDN'T SAY IT'S AUTISM. 6673 03:38:10,520 --> 03:38:11,960 IF I WERE TO SAY TO SOMEBODY 6674 03:38:11,960 --> 03:38:14,800 LIKE THAT, SOMEBODY MY AGE, YOU 6675 03:38:14,800 --> 03:38:17,160 ACT AUTISTIC. 6676 03:38:17,160 --> 03:38:19,440 A SCIENTIST AT THE LAB WOULD 6677 03:38:19,440 --> 03:38:20,600 REJECT THAT BECAUSE AUTISM IS A 6678 03:38:20,600 --> 03:38:22,840 MEDICAL TERM FOR DISABILITY. 6679 03:38:22,840 --> 03:38:24,720 ANY CONVERSATION ABOUT AUTISM 6680 03:38:24,720 --> 03:38:28,000 STARTS BY DEFICIT. 6681 03:38:28,000 --> 03:38:29,200 DEFICITS IN FAILURE AND MOST 6682 03:38:29,200 --> 03:38:30,840 PEOPLE WORKING AT A PLACE LIKE 6683 03:38:30,840 --> 03:38:32,160 LIVERMORE WOULD NOT BE 6684 03:38:32,160 --> 03:38:33,360 CHARACTERIZED AS FAILURES, NO 6685 03:38:33,360 --> 03:38:35,000 MATTER HOW THEY SEE THEMSELVES 6686 03:38:35,000 --> 03:38:35,800 INSIDE. 6687 03:38:35,800 --> 03:38:38,200 AND EVEN IF THEY DO SEE 6688 03:38:38,200 --> 03:38:40,080 THEMSELVES INSIDE AS HAVING 6689 03:38:40,080 --> 03:38:42,720 AUTISTIC TRAITS, THE NEXT THING, 6690 03:38:42,720 --> 03:38:45,360 AND WE'VE DISCUSSED THIS IN IACC 6691 03:38:45,360 --> 03:38:46,440 MEETINGS IN YEARS PAST, IS THAT 6692 03:38:46,440 --> 03:38:48,040 IF YOU'RE AUTISTIC, YOU AREN'T 6693 03:38:48,040 --> 03:38:49,360 QUALIFIED FOR MILITARY SERVICE. 6694 03:38:49,360 --> 03:38:50,440 YOU MIGHT BE A SECURITY RISK. 6695 03:38:50,440 --> 03:38:52,640 YOU'RE A HIGHER INSURANCE RISK. 6696 03:38:52,640 --> 03:38:53,920 THERE ARE MANY OTHER GOOD 6697 03:38:53,920 --> 03:38:55,480 REASONS TO REJECT THAT. 6698 03:38:55,480 --> 03:38:58,880 WERE IF ON THE OTHER HAND, WE 6699 03:38:58,880 --> 03:39:00,200 EXPLAIN HOW THEIR NEUROTYPE THAT 6700 03:39:00,200 --> 03:39:01,720 MAKES THEM SO SUCCESSFUL HAS 6701 03:39:01,720 --> 03:39:02,840 HAMPERED THEM IN SOCIAL 6702 03:39:02,840 --> 03:39:07,000 SETTINGS, WE HAVE THE BASIS OF A 6703 03:39:07,000 --> 03:39:08,240 CONVERSATION THAT LEADS TO 6704 03:39:08,240 --> 03:39:08,960 UNDERSTANDING AND MAKING THEIR 6705 03:39:08,960 --> 03:39:09,760 LIVES BETTER. 6706 03:39:09,760 --> 03:39:12,400 I HAVE SEEN AT THE LAB HOW 6707 03:39:12,400 --> 03:39:15,240 ENLIGHTENMENT HAS BEEN AS 6708 03:39:15,240 --> 03:39:16,560 TRANSFORMATIONAL FOR SOME OF 6709 03:39:16,560 --> 03:39:17,640 THEM AS IT ULTIMATELY WAS FOR 6710 03:39:17,640 --> 03:39:18,240 ME. 6711 03:39:18,240 --> 03:39:19,960 AND YOU SAW HOW IT HAS WORKED 6712 03:39:19,960 --> 03:39:21,280 FOR ME OVER THE YEARS. 6713 03:39:21,280 --> 03:39:22,600 SO WHO MIGHT INITIATE THESE 6714 03:39:22,600 --> 03:39:24,040 CONVERSATIONS? 6715 03:39:24,040 --> 03:39:25,960 I THINK NEURODIVERSITY AT WORK 6716 03:39:25,960 --> 03:39:27,520 PROGRAMS ARE GOING TO MOVE IN 6717 03:39:27,520 --> 03:39:29,480 THAT DIRECTION. 6718 03:39:29,480 --> 03:39:30,520 ONE THING THAT'S IMPORTANT THAT 6719 03:39:30,520 --> 03:39:32,360 LIVERMORE IS DOING IN THEIR 6720 03:39:32,360 --> 03:39:34,360 NEURODIVERSITY IS DIRECTING 6721 03:39:34,360 --> 03:39:36,280 THEIR FOCUS ON TO NEURODIVERGENT 6722 03:39:36,280 --> 03:39:37,920 PEOPLE WHO ALREADY WORK AT THE 6723 03:39:37,920 --> 03:39:38,080 LAB. 6724 03:39:38,080 --> 03:39:39,080 AND I THINK THAT'S WHERE 6725 03:39:39,080 --> 03:39:40,960 COMPANIES WILL GET REAL BENEFIT. 6726 03:39:40,960 --> 03:39:44,200 MAKING A FEW THOUSAND EXISTING 6727 03:39:44,200 --> 03:39:45,800 WORKERS HAPPIER AND MORE 6728 03:39:45,800 --> 03:39:46,880 PRODUCTIVE THROUGH UNDERSTANDING 6729 03:39:46,880 --> 03:39:47,760 THEIR DIFFERENT BRAINS. 6730 03:39:47,760 --> 03:39:49,520 AND YOU REALLY WIN BIG, MUCH 6731 03:39:49,520 --> 03:39:52,600 MORE SO THAN A SMALL NUMBER OF 6732 03:39:52,600 --> 03:39:54,040 NEURODIVERSITY AT WORK INTERNS, 6733 03:39:54,040 --> 03:39:55,800 WHICH IS THE CURRENT PREVAILING 6734 03:39:55,800 --> 03:39:59,720 MODEL, WHICH I FEEL IS FAILING. 6735 03:39:59,720 --> 03:40:02,800 COMPANIES THAT BELIEVE IN THIS 6736 03:40:02,800 --> 03:40:04,040 SHOULD SEE THAT THE PEOPLE THEY 6737 03:40:04,040 --> 03:40:05,360 CAN HELP ARE RIGHT THERE ON THE 6738 03:40:05,360 --> 03:40:06,640 JOB, NOT ON THE STREET WAITING 6739 03:40:06,640 --> 03:40:08,840 TO BE RECRUITED. 6740 03:40:08,840 --> 03:40:11,560 OUTSIDE THE WORKPLACE, ONCE 6741 03:40:11,560 --> 03:40:12,680 YOU'RE DEALING WITH PEOPLE 6742 03:40:12,680 --> 03:40:15,520 WHO'VE AGED OUT OF PUBLIC SCHOOL 6743 03:40:15,520 --> 03:40:19,160 SUPPORT, I REALLY THINK THAT THE 6744 03:40:19,160 --> 03:40:21,400 MEDICAL AND COUNSELING 6745 03:40:21,400 --> 03:40:23,960 PROFESSIONALS NEED TRAINING IN 6746 03:40:23,960 --> 03:40:25,840 UNDERSTANDING AND PRESENTING THE 6747 03:40:25,840 --> 03:40:27,800 NEURODIVERSITY PARADIGM BECAUSE 6748 03:40:27,800 --> 03:40:30,640 ONCE THE ERA OF FREE SUPPORT IN 6749 03:40:30,640 --> 03:40:33,040 PUBLIC SCHOOL ENDS, THERE'S A 6750 03:40:33,040 --> 03:40:35,040 TENDENCY TO REJECT SOMETHING WE 6751 03:40:35,040 --> 03:40:35,800 DON'T WANT. 6752 03:40:35,800 --> 03:40:37,320 AND AUTISM IS NOT A THING THAT 6753 03:40:37,320 --> 03:40:38,960 OLDER PEOPLE WANT TO EMBRACE 6754 03:40:38,960 --> 03:40:42,600 WITH ENTHUSIASM, BUT 6755 03:40:42,600 --> 03:40:44,280 NEURODIVERSITY DIFFERENCE AND 6756 03:40:44,280 --> 03:40:44,800 EMPOWERMENT ARE. 6757 03:40:44,800 --> 03:40:46,560 I BELIEVE THAT'S A VERY, VERY 6758 03:40:46,560 --> 03:40:47,960 IMPORTANT THING WE CAN DO TO 6759 03:40:47,960 --> 03:40:50,600 SUPPORT OLDER ADULTS, AND IT 6760 03:40:50,600 --> 03:40:54,560 WILL HELP EVERYONE. 6761 03:40:54,560 --> 03:40:56,400 A FINAL THOUGHT ON 6762 03:40:56,400 --> 03:40:57,840 NEURODIVERSITY IN THIS SPACE. 6763 03:40:57,840 --> 03:41:00,600 ALL OF YOU KNOW ME AS AN 6764 03:41:00,600 --> 03:41:01,800 AUTISTIC PERSON. 6765 03:41:01,800 --> 03:41:04,120 AND YOU KNOW ME AS AN EXPERT ON 6766 03:41:04,120 --> 03:41:04,480 AUTISM. 6767 03:41:04,480 --> 03:41:06,520 I'VE SERVED ON STEERING 6768 03:41:06,520 --> 03:41:08,400 COMMITTEES TO DEFINE AUTISM AND 6769 03:41:08,400 --> 03:41:09,880 SO ON. 6770 03:41:09,880 --> 03:41:12,120 BUT MY MULTITASKING, THAT'S 6771 03:41:12,120 --> 03:41:13,240 ALWAYS BEEN ADHD. 6772 03:41:13,240 --> 03:41:14,520 MY READING DIFFICULTIES, WHICH 6773 03:41:14,520 --> 03:41:16,320 YOU DON'T SEE BUT I HAVE, HAVE 6774 03:41:16,320 --> 03:41:17,680 ALWAYS BEEN DYSLEXIA, JUST LIKE 6775 03:41:17,680 --> 03:41:20,600 MY SON, WHO WAS DIAGNOSED WITH 6776 03:41:20,600 --> 03:41:20,880 DYSLEXIA. 6777 03:41:20,880 --> 03:41:23,880 MY TREMORS SOMETIMES THAT YOU 6778 03:41:23,880 --> 03:41:25,200 SEE, MAYBE THEY'RE HINTS AT 6779 03:41:25,200 --> 03:41:26,200 EPILEPSY, MAYBE IT'S A LITTLE 6780 03:41:26,200 --> 03:41:28,600 BIT OF TOURETTES. 6781 03:41:28,600 --> 03:41:29,840 AND SAYING THAT I HAVE A NUMBER 6782 03:41:29,840 --> 03:41:32,840 OF CO-MORBID CONDITIONS, IT 6783 03:41:32,840 --> 03:41:34,400 VERGES ON -- IT HAS NO MEANING. 6784 03:41:34,400 --> 03:41:36,360 BUT SAYING I'M NEURODIVERGENT, 6785 03:41:36,360 --> 03:41:38,720 THAT'S A THING THAT I CAN 6786 03:41:38,720 --> 03:41:39,280 EMBRACE. 6787 03:41:39,280 --> 03:41:40,880 AND IN SAYING THAT TO YOU, I 6788 03:41:40,880 --> 03:41:43,360 WOULD SAY THAT THERE'S MILLIONS 6789 03:41:43,360 --> 03:41:45,240 OF PEOPLE WHO WOULD SEE IT THE 6790 03:41:45,240 --> 03:41:46,720 SAME WAY AS ME. 6791 03:41:46,720 --> 03:41:49,000 HAVING SAID THAT, I RESPECT THAT 6792 03:41:49,000 --> 03:41:50,520 THERE ARE PEOPLE WHO CAME BEFORE 6793 03:41:50,520 --> 03:41:53,160 US IN MY TIME ON IACC, AND THEY 6794 03:41:53,160 --> 03:41:54,560 SAID I HATE MY AUTISM, I HATE 6795 03:41:54,560 --> 03:41:57,200 IT, AND I DON'T -- I'M NOT 6796 03:41:57,200 --> 03:41:59,280 NEURODIVERGENT, I'M AUTISTIC. 6797 03:41:59,280 --> 03:42:00,360 I RESPECT THAT PEOPLE CAN HAVE 6798 03:42:00,360 --> 03:42:01,800 OTHER OPINIONS THAN ME. 6799 03:42:01,800 --> 03:42:03,320 BUT I WOULD SUGGEST TO YOU WITH 6800 03:42:03,320 --> 03:42:07,040 ALL DUE RESPECT, THAT THE 6801 03:42:07,040 --> 03:42:09,160 NEURODIVERSITY PARADIGM IS VERY 6802 03:42:09,160 --> 03:42:11,560 POWERFUL, AND A GREAT MANY 6803 03:42:11,560 --> 03:42:13,680 PEOPLE FEEL AS I DO BASED ON MY 6804 03:42:13,680 --> 03:42:16,280 EXPERIENCE TALKING TO PEOPLE. 6805 03:42:16,280 --> 03:42:18,040 BEFORE I ASK FOR QUESTIONS OR 6806 03:42:18,040 --> 03:42:21,000 COMMENTS, I'D LIKE TO OFFER 6807 03:42:21,000 --> 03:42:21,440 THESE THOUGHTS ALSO. 6808 03:42:21,440 --> 03:42:23,760 I SERVED TWO TERMS ON THIS 6809 03:42:23,760 --> 03:42:25,320 COMMITTEE, AND A NUMBER OF YEARS 6810 03:42:25,320 --> 03:42:26,800 ON GOVERNMENT COMMITTEES BEFORE 6811 03:42:26,800 --> 03:42:29,280 THAT, AND I'M PROUD OF MOST OF 6812 03:42:29,280 --> 03:42:30,600 WHAT I SAID OR DID. 6813 03:42:30,600 --> 03:42:33,360 THERE'S ONE THING THAT I REGRET. 6814 03:42:33,360 --> 03:42:35,760 I REGRET THE TIMES THAT I 6815 03:42:35,760 --> 03:42:37,280 CRITICIZED OR MOCKED PEOPLE WHO 6816 03:42:37,280 --> 03:42:39,040 ATTACKED ME OR SAID THINGS I 6817 03:42:39,040 --> 03:42:40,400 THOUGHT WERE RIDICULOUS. 6818 03:42:40,400 --> 03:42:42,600 AND TO THOSE OF YOU I HURT WITH 6819 03:42:42,600 --> 03:42:44,560 MY WORDS AT THOSE TIMES, I 6820 03:42:44,560 --> 03:42:46,200 APOLOGIZE. 6821 03:42:46,200 --> 03:42:49,200 SERVING ON IACC COMES WITH A 6822 03:42:49,200 --> 03:42:51,360 DUTY TO ADVOCATE FOR ALL 6823 03:42:51,360 --> 03:42:53,000 AUTISTIC PEOPLE, NO MATTER WHO 6824 03:42:53,000 --> 03:42:54,120 THEY ARE, HOW THEY FEEL ABOUT 6825 03:42:54,120 --> 03:42:58,400 AUTISM, THEMSELVES, YOU AS IACC 6826 03:42:58,400 --> 03:43:00,480 MEMBERS OR THE COMMITTEE. 6827 03:43:00,480 --> 03:43:02,680 YOUR JOB IN REPRESENTING THE 6828 03:43:02,680 --> 03:43:04,320 AUTISM COMMUNITY BEFORE THE 6829 03:43:04,320 --> 03:43:05,760 FEDERAL GOVERNMENT IS TO DO YOUR 6830 03:43:05,760 --> 03:43:09,280 BEST FOR ALL AUTISTICS WITHOUT 6831 03:43:09,280 --> 03:43:10,800 FAVORITISM. 6832 03:43:10,800 --> 03:43:11,880 EVERY PERSON WHO COMES BEFORE 6833 03:43:11,880 --> 03:43:14,480 THE COMMITTEE WENT TO TROUBLE TO 6834 03:43:14,480 --> 03:43:15,280 DO SO. 6835 03:43:15,280 --> 03:43:19,160 AND THEY DESERVE OUR ATTENTION 6836 03:43:19,160 --> 03:43:19,480 AND RESPECT. 6837 03:43:19,480 --> 03:43:21,120 IN THE LAST YEARS OF MY SERVICE 6838 03:43:21,120 --> 03:43:23,840 ON THE IACC, I REALLY CAME TO 6839 03:43:23,840 --> 03:43:25,840 BELIEVE THOSE WORDS APPLY MOST 6840 03:43:25,840 --> 03:43:29,120 OF ALL TO THE PEOPLE WHO OPPOSE 6841 03:43:29,120 --> 03:43:30,640 US, WHO DISLIKE US, WHO HOLD 6842 03:43:30,640 --> 03:43:34,040 VIEWS WE THINK ARE WRONG OR EVEN 6843 03:43:34,040 --> 03:43:34,320 DANGEROUS. 6844 03:43:34,320 --> 03:43:35,800 WE ARE THEIR REPRESENTATIVES 6845 03:43:35,800 --> 03:43:37,440 TOO, BEFORE THE GOVERNMENT. 6846 03:43:37,440 --> 03:43:40,000 AND I THINK THAT'S REALLY A 6847 03:43:40,000 --> 03:43:42,600 SACRED DUTY THAT WE HAVE, TO 6848 03:43:42,600 --> 03:43:44,920 REPRESENT EVERYONE FAIRLY AND AT 6849 03:43:44,920 --> 03:43:47,200 THE SAME TIME, TO BE GUIDED BY 6850 03:43:47,200 --> 03:43:49,960 THE BEST OF TODAY'S SCIENTIFIC 6851 03:43:49,960 --> 03:43:50,520 KNOWLEDGE. 6852 03:43:50,520 --> 03:43:52,600 IT'S UP TO YOU ON TODAY'S IACC 6853 03:43:52,600 --> 03:43:55,280 TO CARRY THIS ADVOCACY FORWARD 6854 03:43:55,280 --> 03:43:57,480 AND URGE YOU TO DO SO WITH 6855 03:43:57,480 --> 03:44:00,160 KINDNESS, RESPECT AND WISDOM. 6856 03:44:00,160 --> 03:44:06,640 THANK YOU. 6857 03:44:06,640 --> 03:44:10,360 >>I THINK WE WILL HOLD 6858 03:44:10,360 --> 03:44:14,120 QUESTIONS TO THE END OF THE 6859 03:44:14,120 --> 03:44:15,200 SESSION WITH VOICES OF 6860 03:44:15,200 --> 03:44:15,600 EXPERIENCE. 6861 03:44:15,600 --> 03:44:18,840 SO WE'LL MOVE ON TO OUR NEXT 6862 03:44:18,840 --> 03:44:23,640 SPEAKER, WHO IS YULANDA HARRIS. 6863 03:44:23,640 --> 03:44:26,720 DR. HARRIS. 6864 03:44:26,720 --> 03:44:28,040 >>GOOD MORNING. 6865 03:44:28,040 --> 03:44:29,000 CAN EVERYONE HEAR ME OKAY? 6866 03:44:29,000 --> 03:44:29,680 >>YES, WE CAN. 6867 03:44:29,680 --> 03:44:31,920 >>OKAY, THANK YOU. 6868 03:44:31,920 --> 03:44:36,640 FIRST OF ALL, I JUST WANT TO 6869 03:44:36,640 --> 03:44:38,360 ACKNOWLEDGE DR. DANIELS FOR 6870 03:44:38,360 --> 03:44:43,160 INVITING ME TO BE A PART OF THIS 6871 03:44:43,160 --> 03:44:43,360 PANEL. 6872 03:44:43,360 --> 03:44:45,520 AS WELL AS CAMILLE PROCTOR, 6873 03:44:45,520 --> 03:44:46,280 FOUNDER AND DIRECTOR OF "THE 6874 03:44:46,280 --> 03:44:49,800 COLOR OF AUTISM" THAT REFERRED 6875 03:44:49,800 --> 03:44:56,120 ME TO DR. DANIELS. 6876 03:44:56,120 --> 03:44:57,600 SO JUST TO KIND OF SHARE A 6877 03:44:57,600 --> 03:44:59,040 LITTLE BIT ABOUT ME AND MY 6878 03:44:59,040 --> 03:45:03,160 PERSONAL EXPERIENCE AS AN OLDER 6879 03:45:03,160 --> 03:45:05,800 ADULT, MY COMPANY, 6880 03:45:05,800 --> 03:45:07,800 TRAININGPHASE, WHAT I DO IS, I 6881 03:45:07,800 --> 03:45:11,440 WORK WITH BUSINESSES TO CREATE A 6882 03:45:11,440 --> 03:45:15,000 MORE NEURODIVERSE FRIENDLY 6883 03:45:15,000 --> 03:45:15,320 ENVIRONMENT. 6884 03:45:15,320 --> 03:45:17,160 SO THAT'S JUST A LITTLE -- JUST 6885 03:45:17,160 --> 03:45:20,080 A QUICK OVERVIEW OF WHAT I DO 6886 03:45:20,080 --> 03:45:25,240 ALONG WITH WORKING IN A 6887 03:45:25,240 --> 03:45:28,760 NON-PROFIT SECTOR AS A CHIEF 6888 03:45:28,760 --> 03:45:29,480 ORGANIZATIONAL DEVELOPMENT 6889 03:45:29,480 --> 03:45:31,160 OFFICER WHERE I DO LEADERSHIP, 6890 03:45:31,160 --> 03:45:33,520 PROFESSIONAL DEVELOPMENT, 6891 03:45:33,520 --> 03:45:34,080 COACHING WITH THE STAFF. 6892 03:45:34,080 --> 03:45:36,600 SO JUST TO KIND OF DESCRIBE A 6893 03:45:36,600 --> 03:45:41,920 LITTLE BIT ABOUT MY DIAGNOSIS 6894 03:45:41,920 --> 03:45:44,320 COMPARED TO WHAT I EXPERIENCED 6895 03:45:44,320 --> 03:45:46,680 EARLIER IN LIFE, I WAS 58 YEARS 6896 03:45:46,680 --> 03:45:49,120 OLD WHEN I WAS FORMERLY MADE 6897 03:45:49,120 --> 03:45:53,840 AWARE OF MY AUTISM BY RECEIVING 6898 03:45:53,840 --> 03:45:56,320 A DIAGNOSIS OF ASPERGER'S 6899 03:45:56,320 --> 03:45:58,040 SYNDROME, WHICH IS A FORM OF, 6900 03:45:58,040 --> 03:46:00,160 YOU KNOW, BEING ON THE AUTISM 6901 03:46:00,160 --> 03:46:03,520 SPECTRUM DISORDER. 6902 03:46:03,520 --> 03:46:06,040 AND THE WAY MY THERAPIST HAD 6903 03:46:06,040 --> 03:46:08,160 DESCRIBED TO ME OR THE 6904 03:46:08,160 --> 03:46:10,120 PSYCHIATRIST HAD DESCRIBED TO 6905 03:46:10,120 --> 03:46:13,840 ME, HE SAID THAT, YOU KNOW, YEU 6906 03:46:13,840 --> 03:46:25,200 LAN DA,WHYYYYULANDA, YOU HAVE M, 6907 03:46:25,440 --> 03:46:29,120 HE WENT INTO DETAIL EXPLAINING 6908 03:46:29,120 --> 03:46:33,440 WHAT AUTISM IS. 6909 03:46:33,440 --> 03:46:35,680 DR. DERWIN GUTIERREZ FROM EASTER 6910 03:46:35,680 --> 03:46:36,480 SEALS OF MICHIGAN, WHICH IS 6911 03:46:36,480 --> 03:46:39,880 WHERE I SPENT A LOT OF MY TIME 6912 03:46:39,880 --> 03:46:41,480 GOING TO THERAPY WITH HIM 6913 03:46:41,480 --> 03:46:43,960 BECAUSE GROWING UP DIDN'T REALLY 6914 03:46:43,960 --> 03:46:46,240 KNOW WHAT WAS GOING ON, EVEN IN 6915 03:46:46,240 --> 03:46:50,000 MY EARLY ADULTHOOD AS WELL. 6916 03:46:50,000 --> 03:46:50,920 SO THE WAY IT WAS EXPLAINED, AND 6917 03:46:50,920 --> 03:46:52,360 THIS IS WHERE I REALLY WANT TO 6918 03:46:52,360 --> 03:46:58,160 JUST KIND OF FOLLOW WITH WHAT 6919 03:46:58,160 --> 03:47:00,240 ELLIOT WAS SAYING IN THE OTHER 6920 03:47:00,240 --> 03:47:01,360 SEGMENT, THE EARLIER SEGMENT 6921 03:47:01,360 --> 03:47:02,440 ABOUT HIGH FUNCTIONING AUTISM, 6922 03:47:02,440 --> 03:47:04,640 AND KNOWING THAT IT ISN'T -- 6923 03:47:04,640 --> 03:47:06,640 BASED ON RESEARCH THAT I HAVE 6924 03:47:06,640 --> 03:47:09,240 DONE, IT'S NOT AN OFFICIAL 6925 03:47:09,240 --> 03:47:10,840 MEDICAL TERM OR A DIAGNOSIS, 6926 03:47:10,840 --> 03:47:12,600 IT'S REALLY -- AND THAT'S WHY 6927 03:47:12,600 --> 03:47:15,040 SOMEONE LIKE MYSELF DO NOT LIKE 6928 03:47:15,040 --> 03:47:18,920 USING THAT TERM, HIGH 6929 03:47:18,920 --> 03:47:24,560 FUNCTIONING AUTISM, BECAUSE IT'S 6930 03:47:24,560 --> 03:47:26,560 AN INFORMAL TERM USED IN A 6931 03:47:26,560 --> 03:47:28,280 NEUROTYPICAL SETTING PEOPLE WILL 6932 03:47:28,280 --> 03:47:30,280 USE WHEN THEY TALK ABOUT 6933 03:47:30,280 --> 03:47:30,920 INDIVIDUALS LIKE MYSELF ON THE 6934 03:47:30,920 --> 03:47:33,160 AUTISM SPECTRUM DISORDER WHO CAN 6935 03:47:33,160 --> 03:47:38,960 SPEAK, READ, WRITE, HANDLE 6936 03:47:38,960 --> 03:47:41,760 BASIC -- WE'RE TALKING BASIC 6937 03:47:41,760 --> 03:47:43,480 LIFE SKILLS WHEN WE TALK ABOUT 6938 03:47:43,480 --> 03:47:44,680 EATING, GETTING DRESSED, THINGS 6939 03:47:44,680 --> 03:47:48,040 LIKE THAT, WE LIVE 6940 03:47:48,040 --> 03:47:48,360 INDEPENDENTLY. 6941 03:47:48,360 --> 03:47:50,680 PEOPLE ARE HIGH FUNCTIONING, 6942 03:47:50,680 --> 03:47:53,600 WHICH IS THAT TERM AGAIN, WE 6943 03:47:53,600 --> 03:47:58,440 STILL HAVE A VERY HARD TIME AND 6944 03:47:58,440 --> 03:47:59,360 CHALLENGING TIME WHEN IT COMES 6945 03:47:59,360 --> 03:48:02,960 TO SOCIAL INTERACTION AS WELL AS 6946 03:48:02,960 --> 03:48:06,000 COMMUNICATION. 6947 03:48:06,000 --> 03:48:07,760 AND I'M NOW GOING TO SPEAK 6948 03:48:07,760 --> 03:48:10,360 BASICALLY ON BEHALF OF MYSELF 6949 03:48:10,360 --> 03:48:13,520 WHERE I NOW HAVE LEARNED TO 6950 03:48:13,520 --> 03:48:19,080 ADVOCATE FOR MYSELF IN ADDITION 6951 03:48:19,080 --> 03:48:22,320 TO OTHERS WITH ASD, SO WHEN IT 6952 03:48:22,320 --> 03:48:26,120 COMES TO ANY TYPE OF SOCIAL 6953 03:48:26,120 --> 03:48:27,400 INTERACTION, I DON'T NECESSARILY 6954 03:48:27,400 --> 03:48:31,560 READ OR PICK UP ON THOSE SOCIAL 6955 03:48:31,560 --> 03:48:33,600 CUES, AND I HAVE FOUND, YOU 6956 03:48:33,600 --> 03:48:34,960 KNOW, ESPECIALLY AS I HAVE 6957 03:48:34,960 --> 03:48:36,760 BECOME OLDER, AND I KNOW THIS IS 6958 03:48:36,760 --> 03:48:39,000 THE PART ABOUT BEING AN OLDER 6959 03:48:39,000 --> 03:48:40,000 ADULT THIS SEGMENT HERE, WHICH 6960 03:48:40,000 --> 03:48:42,680 I'M REALLY GOING TO TOUCH A LOT 6961 03:48:42,680 --> 03:48:46,200 ON OVER THE YEARS, AND BY ME NOW 6962 03:48:46,200 --> 03:48:48,160 BEING 62 YEARS OLD, AND TO BE 6963 03:48:48,160 --> 03:48:50,840 CONSIDERED AS AN OLDER ADULT, I 6964 03:48:50,840 --> 03:48:52,440 STILL STRUGGLE WITH THAT. 6965 03:48:52,440 --> 03:48:52,960 YOU KNOW? 6966 03:48:52,960 --> 03:48:56,680 IN TERMS OF AGING, AND THE 6967 03:48:56,680 --> 03:48:59,920 ISSUES AND THE CHALLENGES THAT I 6968 03:48:59,920 --> 03:49:02,760 SEEM TO HAVE FACED AT THIS STAGE 6969 03:49:02,760 --> 03:49:05,280 IN MY LIFE IS THAT, ONE, WITH 6970 03:49:05,280 --> 03:49:07,520 THE UNDERSTANDING OF KNOWING 6971 03:49:07,520 --> 03:49:10,360 THAT AUTISM IS A LIFELONG 6972 03:49:10,360 --> 03:49:13,960 NEUROLOGICAL AND DEVELOPMENTAL 6973 03:49:13,960 --> 03:49:15,920 CONDITION, YOU'RE GOING TO FIND 6974 03:49:15,920 --> 03:49:19,600 AND WE'RE FINDING THAT THERE ARE 6975 03:49:19,600 --> 03:49:21,320 AN INCREASING NUMBER OF OLDER 6976 03:49:21,320 --> 03:49:23,840 ADULTS WHO ARE NOW BEING 6977 03:49:23,840 --> 03:49:27,480 FORMALLY DIAGNOSED LATER IN 6978 03:49:27,480 --> 03:49:27,720 LIFE. 6979 03:49:27,720 --> 03:49:31,640 SO GROWING UP, I DID EXHIBIT, 6980 03:49:31,640 --> 03:49:33,680 AND EVEN NOW, WHICH IS MORE 6981 03:49:33,680 --> 03:49:34,960 PREVALENT, WHERE I EXHIBIT A LOT 6982 03:49:34,960 --> 03:49:39,240 OF THE EMOTIONAL TRAITS WHERE I 6983 03:49:39,240 --> 03:49:43,120 WAS MISTAKEN, YOU KNOW, WHEN I 6984 03:49:43,120 --> 03:49:44,440 WAS MUCH YOUNGER AS BEING SHY, 6985 03:49:44,440 --> 03:49:50,200 YOU KNOW, BEING TOO SENSITIVE, 6986 03:49:50,200 --> 03:49:51,880 OR RIGHT NOW IN TERMS OF DEALING 6987 03:49:51,880 --> 03:49:54,760 WITH PAST TRAUMA, SO WHAT I 6988 03:49:54,760 --> 03:49:58,480 WOULD HAVE TO DO IN TERMS OF 6989 03:49:58,480 --> 03:50:01,000 MASKING, ANY TYPE OF AUTISM 6990 03:50:01,000 --> 03:50:05,720 SYMPTOMS IN ORDER TO REALLY 6991 03:50:05,720 --> 03:50:07,800 APPEAR NEUROTYPICAL OR JUST TO 6992 03:50:07,800 --> 03:50:08,120 FIT IN. 6993 03:50:08,120 --> 03:50:13,160 AND BY DOING THAT, IT BECAME 6994 03:50:13,160 --> 03:50:15,960 INCREASINGLY STR STRESSFUL. 6995 03:50:15,960 --> 03:50:17,960 AND THE STRESS, AS YOU ALL KNOW, 6996 03:50:17,960 --> 03:50:21,320 WHEN WE GO THROUGH ANY TYPE OF 6997 03:50:21,320 --> 03:50:25,040 STRESSFUL SITUATIONS WHICH IS 6998 03:50:25,040 --> 03:50:27,440 WHAT DR. DURHAM HAD REALLY 6999 03:50:27,440 --> 03:50:28,760 COACHED ME ON THROUGH THE 7000 03:50:28,760 --> 03:50:31,200 PROCESS IN TERMS OF STAYING AWAY 7001 03:50:31,200 --> 03:50:35,280 OR TO NOT BE IN A LOT OF 7002 03:50:35,280 --> 03:50:38,320 STRESSFUL SITUATIONS, THAT HAS 7003 03:50:38,320 --> 03:50:41,120 REALLY TAKEN A TOLL IN TERMS OF 7004 03:50:41,120 --> 03:50:43,400 MENTALLY AND PHYSICALLY, WHEN WE 7005 03:50:43,400 --> 03:50:44,920 TALK ABOUT HEALTH PROBLEMS OVER 7006 03:50:44,920 --> 03:50:49,600 TIME IN OLDER ADULTS. 7007 03:50:49,600 --> 03:50:51,640 SO THAT KIND OF EXPLAINS -- NOT 7008 03:50:51,640 --> 03:50:53,600 KIND OF, BUT THAT REALLY 7009 03:50:53,600 --> 03:50:56,600 EXPLAINS AS I THINK BACK BECAUSE 7010 03:50:56,600 --> 03:50:58,040 I PROCESSED THAT DURING THAT 7011 03:50:58,040 --> 03:51:03,280 TIME, AS I WAS GOING THROUGH MY 7012 03:51:03,280 --> 03:51:07,880 STAGES IN LIFE, I GUESS YOU CAN 7013 03:51:07,880 --> 03:51:10,680 SAY THAT I NOW UNDERSTAND WHY I 7014 03:51:10,680 --> 03:51:14,080 WAS MISDIAGNOSED AS BEING 7015 03:51:14,080 --> 03:51:16,720 BIPOLAR, MISDIAGNOSED AS HAVING 7016 03:51:16,720 --> 03:51:17,360 BORDERLINE PERSONALITY DISORDER 7017 03:51:17,360 --> 03:51:18,600 ALONG WITH OTHER MENTAL HEALTH 7018 03:51:18,600 --> 03:51:21,360 ISSUES WE TALK ABOUT SEVERE 7019 03:51:21,360 --> 03:51:22,200 DEPRESSION AND SO ON. 7020 03:51:22,200 --> 03:51:25,440 AND SO THE CHALLENGE IS, I 7021 03:51:25,440 --> 03:51:28,200 THINK, NOW THAT I AM REALLY 7022 03:51:28,200 --> 03:51:32,560 FACING AS AN OLDER ADULT IS, 7023 03:51:32,560 --> 03:51:35,760 WHEN IT COMES TO COMMUNICATION. 7024 03:51:35,760 --> 03:51:37,520 THE COMMUNITYCATION LEVEL OF 7025 03:51:37,520 --> 03:51:40,840 BEING TOO DIRECT, BEING VERY 7026 03:51:40,840 --> 03:51:44,560 LITERAL AND SOMETIMES BEING 7027 03:51:44,560 --> 03:51:45,680 MISUNDERSTOOD. 7028 03:51:45,680 --> 03:51:50,800 AND I AM VERY MUCH AWARE OF 7029 03:51:50,800 --> 03:51:51,280 THAT. 7030 03:51:51,280 --> 03:51:53,360 IS IT EASY TO CONTROL? 7031 03:51:53,360 --> 03:51:55,440 AT TIMES, YES, IT MANAGEABLE. 7032 03:51:55,440 --> 03:51:58,400 AND I DON'T WANT TO SAY CONTROL 7033 03:51:58,400 --> 03:52:00,040 BUT ABLE TO MANAGE IT. 7034 03:52:00,040 --> 03:52:03,400 KNOWING THAT THIS IS A LIFELONG 7035 03:52:03,400 --> 03:52:04,160 TRAIT THAT I HAVE. 7036 03:52:04,160 --> 03:52:08,120 SO I THINK THE ABILITY TO MANAGE 7037 03:52:08,120 --> 03:52:11,760 IT NOW, NOT SO MUCH MASK THE 7038 03:52:11,760 --> 03:52:13,400 BEHAVIOR, BECAUSE AS I GO 7039 03:52:13,400 --> 03:52:15,560 THROUGH AND I MASK OR THE TERM 7040 03:52:15,560 --> 03:52:17,040 THAT'S BEING USED THAT I HEAR 7041 03:52:17,040 --> 03:52:21,200 NOW OFTEN, ESPECIALLY AT WORK IS 7042 03:52:21,200 --> 03:52:24,920 I THINK WE SAY CODE SWITCHING. 7043 03:52:24,920 --> 03:52:27,960 AND CODE SWITCHING FOR A 7044 03:52:27,960 --> 03:52:29,240 NEUROTYPICAL, ESPECIALLY AS AN 7045 03:52:29,240 --> 03:52:30,200 AFRICAN AMERICAN WOMAN OR PERSON 7046 03:52:30,200 --> 03:52:33,000 OF COLOR, WE HAVE TO COLD 7047 03:52:33,000 --> 03:52:35,840 SWITCH, WELL, YES, WE CAN DO 7048 03:52:35,840 --> 03:52:36,960 THAT IN THE WORKPLACE. 7049 03:52:36,960 --> 03:52:39,400 IT'S EASY FOR A NEUROTYPICAL 7050 03:52:39,400 --> 03:52:40,400 INDIVIDUAL TO CODE SWITCH AND 7051 03:52:40,400 --> 03:52:44,440 THEN GO BACK TO, I GUESS WE CAN 7052 03:52:44,440 --> 03:52:45,200 SAY BEING OURSELVES. 7053 03:52:45,200 --> 03:52:46,680 BUT FOR SOMEONE, ESPECIALLY AS 7054 03:52:46,680 --> 03:52:51,160 AN AUTISTIC ADULT, IT IS 7055 03:52:51,160 --> 03:52:52,520 PAINFUL, AND THIS IS SOMETHING 7056 03:52:52,520 --> 03:52:54,640 THAT I HAVE TRIED TO EXPRESS 7057 03:52:54,640 --> 03:52:58,680 OVER AND OVER WHERE I SIMPLY, 7058 03:52:58,680 --> 03:53:00,640 GROWING UP AND REALIZING NOW 7059 03:53:00,640 --> 03:53:04,080 DURING MY CHILDHOOD INTO MY 7060 03:53:04,080 --> 03:53:08,640 EARLY ADULTHOOD EVEN NOW, IT'S 7061 03:53:08,640 --> 03:53:11,720 VERY, VERY INTENSE AND IT'S 7062 03:53:11,720 --> 03:53:13,760 VERY -- IT CAN BE VERY PAINFUL 7063 03:53:13,760 --> 03:53:17,240 AT TIMES TO -- WHEN IT'S TIME TO 7064 03:53:17,240 --> 03:53:19,080 RIP OFF THAT MASK, YOU KNOW, IN 7065 03:53:19,080 --> 03:53:21,560 TERMS OF CAMOUFLAGING. 7066 03:53:21,560 --> 03:53:24,960 SO THOSE ARE THE CHALLENGES THAT 7067 03:53:24,960 --> 03:53:26,920 I HAVE AS AN OLDER ADULT. 7068 03:53:26,920 --> 03:53:28,440 OTHER CHALLENGES THAT I HAVE, 7069 03:53:28,440 --> 03:53:31,680 WHEN IT COMES TO READING PEOPLE, 7070 03:53:31,680 --> 03:53:34,320 NOT BEING ABLE TO DETERMINE IF 7071 03:53:34,320 --> 03:53:36,160 THIS PERSON IS BEING SARCASTIC 7072 03:53:36,160 --> 03:53:37,760 OR IF THIS PERSON IS JUST 7073 03:53:37,760 --> 03:53:38,960 KIDDING, WHERE THEY HAVE TO TELL 7074 03:53:38,960 --> 03:53:41,160 ME, OH, HEY, I WAS JUST KIDDING, 7075 03:53:41,160 --> 03:53:44,240 THINGS LIKE THAT, AND I THINK 7076 03:53:44,240 --> 03:53:45,240 ONE OF THE BIGGEST CHALLENGES 7077 03:53:45,240 --> 03:53:48,320 WHEN IT COMES TO OLDER ADULTS 7078 03:53:48,320 --> 03:53:54,280 AS, YOU KNOW, AS FAMILY MEMBERS, 7079 03:53:54,280 --> 03:53:57,000 FRIENDS, CO-WORKERS, COLLEAGUES, 7080 03:53:57,000 --> 03:53:59,200 PARTNERS, TO REALLY BE AWARE 7081 03:53:59,200 --> 03:54:03,320 WHEN IT COMES TO OUR CHALLENGES 7082 03:54:03,320 --> 03:54:06,720 OF BEING ABLE TO DISCERN TRUST, 7083 03:54:06,720 --> 03:54:10,280 BEING ABLE TO ESTABLISH THOSE 7084 03:54:10,280 --> 03:54:11,920 BOUNDARIES AND SAFETY OF ANY 7085 03:54:11,920 --> 03:54:15,400 TYPE OF RELATIONSHIPS. 7086 03:54:15,400 --> 03:54:17,160 SO ONE OF THE THINGS WHEN IT 7087 03:54:17,160 --> 03:54:21,640 COMES TO BEING OLDER, AND AT MY 7088 03:54:21,640 --> 03:54:24,200 AGE, AND REALIZING NOW, BEING 7089 03:54:24,200 --> 03:54:27,040 MORE AWARE OF THAT, I'M NOT 7090 03:54:27,040 --> 03:54:30,880 GETTING ANY YOUNG YOUNGER, I AM 7091 03:54:30,880 --> 03:54:31,920 GETTING OLDER, IS THAT WE HAVE 7092 03:54:31,920 --> 03:54:34,640 TO BE VERY MUCH AWARE OF OLDER 7093 03:54:34,640 --> 03:54:36,960 ADULTS WHO ARE BEING LESS 7094 03:54:36,960 --> 03:54:37,320 MOBILE. 7095 03:54:37,320 --> 03:54:39,120 WE'RE TALKING THE SHRINKING OF 7096 03:54:39,120 --> 03:54:41,800 THE SOCIAL CIRCLE THAT WE HAVE, 7097 03:54:41,800 --> 03:54:49,280 AND THE IMPACT ON THE OLDER 7098 03:54:49,280 --> 03:54:50,280 PERSON'S SOCIAL COMMUNICATION 7099 03:54:50,280 --> 03:54:53,040 SKILLS, WHICH, AGAIN, COULD MASK 7100 03:54:53,040 --> 03:54:56,400 ANY UNDERLINING AUTISM TRAITS. 7101 03:54:56,400 --> 03:55:00,640 WE ARE MORE SUSCEPTIBLE WHEN IT 7102 03:55:00,640 --> 03:55:03,920 COMES TO CERTAIN MENTAL HEALTH 7103 03:55:03,920 --> 03:55:05,840 PROBLEMS, PARTICULARLY WHEN WE 7104 03:55:05,840 --> 03:55:07,800 TALK ABOUT LONELINESS AND 7105 03:55:07,800 --> 03:55:10,000 DEPRESSION, AND THIS CAN HAVE A 7106 03:55:10,000 --> 03:55:14,480 HUGE, HUGE IMPACT ON OUR 7107 03:55:14,480 --> 03:55:15,560 SELF-ESTEEM AND OUR BEHAVIOR 7108 03:55:15,560 --> 03:55:20,200 WHERE IT CAUSES US EVEN MORE, 7109 03:55:20,200 --> 03:55:21,960 DAILY, TO AVOID ANY TYPE OF 7110 03:55:21,960 --> 03:55:23,600 SOCIAL SITUATIONS. 7111 03:55:23,600 --> 03:55:26,480 SO BECAUSE I AM AWARE OF ALL OF 7112 03:55:26,480 --> 03:55:29,440 THAT, I DO WHAT I CAN WHEN IT 7113 03:55:29,440 --> 03:55:33,560 COMES TO MY SELF-CARE, BEING AN 7114 03:55:33,560 --> 03:55:39,000 ADVOCATE FOR MYSELF, TO NOT ONLY 7115 03:55:39,000 --> 03:55:40,960 MANAGE CERTAIN TYPES OF 7116 03:55:40,960 --> 03:55:43,680 BEHAVIORS, BUT TO STILL SEE WHAT 7117 03:55:43,680 --> 03:55:47,360 I CAN DO WHERE I CANNOT 7118 03:55:47,360 --> 03:55:48,560 NECESSARILY -- I DON'T WANT TO 7119 03:55:48,560 --> 03:55:51,280 USE THAT TERM, I DON'T WANT TO 7120 03:55:51,280 --> 03:55:55,120 USE THAT TERM IN TERMS OF FIT 7121 03:55:55,120 --> 03:55:59,480 IN, BUT TO HELP OTHERS TO 7122 03:55:59,480 --> 03:56:04,440 UNDERSTAND, TO BE MORE ACCEPTING 7123 03:56:04,440 --> 03:56:07,640 OF INDIVIDUALS WHO ARE AUTISTIC. 7124 03:56:07,640 --> 03:56:10,600 AND SO I DO KNOW BASED ON 7125 03:56:10,600 --> 03:56:12,320 RESEARCH THAT I HAVE DONE THAT, 7126 03:56:12,320 --> 03:56:15,720 YOU KNOW, THERE ARE EXPERTS THAT 7127 03:56:15,720 --> 03:56:17,040 SAY THEY'RE CONFIDENT THAT 7128 03:56:17,040 --> 03:56:20,320 AUTISM DOESN'T GET WORSE WITH 7129 03:56:20,320 --> 03:56:22,160 AGE, BUT DR. ROBINSON JUST 7130 03:56:22,160 --> 03:56:25,400 REALLY HIT ON A POINT WHERE -- I 7131 03:56:25,400 --> 03:56:29,440 WAS TAKING NOTES WHERE HE SAID 7132 03:56:29,440 --> 03:56:32,160 THAT, THE OLDER THAT WE BECOME, 7133 03:56:32,160 --> 03:56:35,640 MORE AUTISTIC TRAITS BEGIN TO 7134 03:56:35,640 --> 03:56:36,000 SURFACE. 7135 03:56:36,000 --> 03:56:39,680 AND THIS IS WHAT I HAVE NOTICED 7136 03:56:39,680 --> 03:56:41,960 WHEN IT COMES TO ME. 7137 03:56:41,960 --> 03:56:44,280 SO WHEN THAT HAPPENS, YOU KNOW, 7138 03:56:44,280 --> 03:56:45,680 EVEN THOUGH I KNOW THERE'S STILL 7139 03:56:45,680 --> 03:56:49,440 NOT A LOT OF WHAT WE DON'T KNOW 7140 03:56:49,440 --> 03:56:50,080 ABOUT IN THE EXPERIENCES, WHEN 7141 03:56:50,080 --> 03:56:55,520 IT COMES TO OL OLDER AUTISTIC 7142 03:56:55,520 --> 03:56:56,400 PEOPLE, BECAUSE IT CAN BE 7143 03:56:56,400 --> 03:56:56,880 DIFFICULT TO DIAGNOSE. 7144 03:56:56,880 --> 03:56:58,800 IT COULD BE VERY DIFFICULT TO 7145 03:56:58,800 --> 03:57:02,800 DIAGNOSE ESPECIALLY IN OLDER -- 7146 03:57:02,800 --> 03:57:05,640 OLDER ADULTS BECAUSE A LOT OF 7147 03:57:05,640 --> 03:57:07,720 THE SYMPTOMS OR THE TRAITS CAN 7148 03:57:07,720 --> 03:57:10,240 ACTUALLY MIRROR OTHER 7149 03:57:10,240 --> 03:57:13,880 AGE-RELATED CONDITIONS. 7150 03:57:13,880 --> 03:57:16,120 SO I REALLY DON'T -- YOU KNOW, I 7151 03:57:16,120 --> 03:57:20,280 CAN GO ON AND ON AND TALK, YOU 7152 03:57:20,280 --> 03:57:24,400 KNOW, MORE AND MORE ABOUT THIS, 7153 03:57:24,400 --> 03:57:27,440 AND I KNOW THERE'S TIME, WE'RE 7154 03:57:27,440 --> 03:57:29,640 LIMITED ON TIME SO I JUST WANTED 7155 03:57:29,640 --> 03:57:31,520 TO KIND OF KEEP IT BRIEF AND 7156 03:57:31,520 --> 03:57:34,400 SHORT AND JUST KIND OF SHARE MY 7157 03:57:34,400 --> 03:57:36,600 EXPERIENCE AND WHATEVER ADVICE I 7158 03:57:36,600 --> 03:57:40,280 CAN GIVE TO Y TO FAMILY, FRIEND, 7159 03:57:40,280 --> 03:57:44,000 PARTNERS OF OLDER ADULTS SUCH AS 7160 03:57:44,000 --> 03:57:47,480 MYSELF, IS TO DEFINITELY EDUCATE 7161 03:57:47,480 --> 03:57:51,160 YOURSELF ON HOW TO BE AN 7162 03:57:51,160 --> 03:57:52,040 ADVOCATE. 7163 03:57:52,040 --> 03:57:52,480 HAVE PATIENCE. 7164 03:57:52,480 --> 03:57:55,760 HAVE PATIENCE BECAUSE ESPECIALLY 7165 03:57:55,760 --> 03:57:57,440 DURING THE MELTDOWNS, WHICH I 7166 03:57:57,440 --> 03:58:01,160 STILL GET, I STILL GET THOSE AND 7167 03:58:01,160 --> 03:58:02,920 IT HAPPENS, DEPENDING ON THE 7168 03:58:02,920 --> 03:58:04,880 SOCIAL SETTING, ANYTHING THAT 7169 03:58:04,880 --> 03:58:08,560 CAN TRIGGER THAT, SO JUST TO 7170 03:58:08,560 --> 03:58:10,960 HAVE THAT PATIENCE AND TO 7171 03:58:10,960 --> 03:58:14,080 DEFINITELY KEEP A WATCHFUL EYE, 7172 03:58:14,080 --> 03:58:15,520 ESPECIALLY FOR THOSE OF US WHO 7173 03:58:15,520 --> 03:58:16,960 LIVE INDEPENDENTLY. 7174 03:58:16,960 --> 03:58:20,600 I LIVE INDEPENDENTLY, AND TO 7175 03:58:20,600 --> 03:58:23,320 KEEP THAT WATCHFUL EYE AND 7176 03:58:23,320 --> 03:58:25,320 FAMILY SUPPORT, FRIENDS SUPPORT, 7177 03:58:25,320 --> 03:58:27,600 PARTNER SUPPORT, THAT IS SO, SO 7178 03:58:27,600 --> 03:58:29,520 KEY, AND I JUST WANT TO SHARE 7179 03:58:29,520 --> 03:58:30,960 JUST ONE OF THE THINGS, EXAMPLES 7180 03:58:30,960 --> 03:58:36,360 OF WAYS THAT I DO GET SUPPORT 7181 03:58:36,360 --> 03:58:37,280 TBR FAMILY. 7182 03:58:37,280 --> 03:58:39,040 FROM FAMILY. 7183 03:58:39,040 --> 03:58:40,800 I JUST MOVED TO A NEW CITY HERE, 7184 03:58:40,800 --> 03:58:42,200 A NEW STATE, WHERE I'M 7185 03:58:42,200 --> 03:58:43,000 ORIGINALLY FROM MICHIGAN SO I 7186 03:58:43,000 --> 03:58:44,440 LIVE IN ANOTHER STATE NOW AND I 7187 03:58:44,440 --> 03:58:46,360 DO HAVE FAMILY HERE, BUT ONE 7188 03:58:46,360 --> 03:58:49,960 EXAMPLE IS THAT MY NIECE, IF SHE 7189 03:58:49,960 --> 03:58:54,160 DOESN'T HEAR FROM ME WITHIN 48 7190 03:58:54,160 --> 03:58:56,320 HOURS, SHE WON'T JUST CALL ME, 7191 03:58:56,320 --> 03:58:57,920 SHE WILL FACETIME ME AND SAY, 7192 03:58:57,920 --> 03:58:59,120 HEY, I HAVEN'T HEARD FROM YOU, I 7193 03:58:59,120 --> 03:59:00,680 WANT TO SEE YOUR FACE. 7194 03:59:00,680 --> 03:59:05,600 SO SHE WANTS TO SEE IF I'M OKAY. 7195 03:59:05,600 --> 03:59:05,920 SO THAT'S -- 7196 03:59:05,920 --> 03:59:06,840 >>THANK YOU, DR. HARRIS. 7197 03:59:06,840 --> 03:59:08,240 IN THE INTEREST OF TIME TO MAKE 7198 03:59:08,240 --> 03:59:09,520 SURE WE GIVE ALL THE 7199 03:59:09,520 --> 03:59:10,040 PANELISTS -- 7200 03:59:10,040 --> 03:59:10,400 >>ABSOLUTELY. 7201 03:59:10,400 --> 03:59:11,480 SO THAT WAS MY CLOSING 7202 03:59:11,480 --> 03:59:11,760 STATEMENT. 7203 03:59:11,760 --> 03:59:12,960 >>THANK YOU VERY MUCH. 7204 03:59:12,960 --> 03:59:13,360 WE APPRECIATE IT. 7205 03:59:13,360 --> 03:59:13,680 >>THANK YOU. 7206 03:59:13,680 --> 03:59:15,040 >>AND WE'LL MOVE ON NEXT TO 7207 03:59:15,040 --> 03:59:17,360 RUTH JONES. 7208 03:59:17,360 --> 03:59:21,440 MS. JONES. 7209 03:59:21,440 --> 03:59:23,440 >>GOOD AFTERNOON. 7210 03:59:23,440 --> 03:59:25,960 HERE ON THE SLIDE, LET ME SEE -- 7211 03:59:25,960 --> 03:59:27,600 I HAVE A LITTLE SLIDE SHOW HERE. 7212 03:59:27,600 --> 03:59:29,080 MY NAME AGAIN IS RUTH JONES. 7213 03:59:29,080 --> 03:59:32,040 I AM THE SISTER AND LEGAL 7214 03:59:32,040 --> 03:59:34,320 GUARDIAN FOR MY SISTER -- MY 7215 03:59:34,320 --> 03:59:35,720 BROTHER, PETER JONES, THAT YOU 7216 03:59:35,720 --> 03:59:36,560 SEE ON THE SCREEN HERE. 7217 03:59:36,560 --> 03:59:38,560 I JUST THOUGHT I'D SHARE THESE 7218 03:59:38,560 --> 03:59:41,920 FEW FAMILY PHOTOS OF HIM. 7219 03:59:41,920 --> 03:59:44,720 HE, OF COURSE, THAT'S HIS 7220 03:59:44,720 --> 03:59:45,320 YOUNGEST PICTURE THERE IN THE 7221 03:59:45,320 --> 03:59:45,920 MIDDLE. 7222 03:59:45,920 --> 03:59:48,640 HE'S WITH MY OLDER SISTER FERN 7223 03:59:48,640 --> 03:59:50,600 AND I'M THE YOUNGER SISTER ON 7224 03:59:50,600 --> 03:59:50,880 THE RIGHT. 7225 03:59:50,880 --> 03:59:52,520 WE'RE THE TWO FAMILY MEMBERS 7226 03:59:52,520 --> 03:59:55,160 THAT KNEW PETER THE BEST AND HAS 7227 03:59:55,160 --> 03:59:57,440 STAYED VERY CLOSE TO HIS 7228 03:59:57,440 --> 03:59:57,760 CIRCUMSTANCES. 7229 03:59:57,760 --> 03:59:58,640 I ALSO INCLUDE A PICTURE OF 7230 03:59:58,640 --> 03:59:59,720 PETER IN THE MIDDLE. 7231 03:59:59,720 --> 04:00:01,960 I ALWAYS THOUGHT HE WAS MY 7232 04:00:01,960 --> 04:00:02,560 BEST-LOOKING BROTHER WITH THE 7233 04:00:02,560 --> 04:00:03,720 REST OF MY BROTHERS, AND THEN 7234 04:00:03,720 --> 04:00:06,560 PETER ON THE END, WHERE HE 7235 04:00:06,560 --> 04:00:08,920 HAS -- IS A CURRENT PICTURE OF 7236 04:00:08,920 --> 04:00:09,320 PETER. 7237 04:00:09,320 --> 04:00:11,440 SO YOU CAN REMOVE THE SLIDES NOW 7238 04:00:11,440 --> 04:00:13,280 OR LEAVE THEM IN THE BACKGROUND, 7239 04:00:13,280 --> 04:00:13,520 HOWEVER. 7240 04:00:13,520 --> 04:00:15,040 BUT FIRST OF ALL, LET ME START 7241 04:00:15,040 --> 04:00:17,880 BY ALSO THANKING DR. DANIELS FOR 7242 04:00:17,880 --> 04:00:21,200 INVITING ME HERE TODAY TO SHARE 7243 04:00:21,200 --> 04:00:23,520 ABOUT PETER, AS WELL AS 7244 04:00:23,520 --> 04:00:26,840 RECOMMEND -- WAS RECOMMENDED BY 7245 04:00:26,840 --> 04:00:29,520 JIM AGRINE STAFF, WHO IS PETER'S 7246 04:00:29,520 --> 04:00:31,040 DIRECTOR TR CAROLINA LIVING AND 7247 04:00:31,040 --> 04:00:32,680 LEARNING CENTER, CLLC. 7248 04:00:32,680 --> 04:00:34,480 HE IS CURRENTLY A RESIDENT 7249 04:00:34,480 --> 04:00:36,080 THERE, AND HAS BEEN A RESIDENT 7250 04:00:36,080 --> 04:00:39,200 THERE FOR ALMOST 31 YEARS. 7251 04:00:39,200 --> 04:00:41,640 BEFORE I GET INTO TALKING ABOUT 7252 04:00:41,640 --> 04:00:42,640 PETER'S CURRENT ISSUES, LET ME 7253 04:00:42,640 --> 04:00:47,120 GIVE A QUICK BACKGROUND. 7254 04:00:47,120 --> 04:00:48,960 PETER WAS DIAGNOSED WITH MENTAL 7255 04:00:48,960 --> 04:00:50,480 RETARDATION IN EARLY 1960s, 7256 04:00:50,480 --> 04:00:51,800 WHICH WAS DISCOVERED AROUND THE 7257 04:00:51,800 --> 04:00:55,080 TIME HE WENT TO KINDERGARTEN. 7258 04:00:55,080 --> 04:00:56,200 HE WOULD NOT BE ABLE TO BE 7259 04:00:56,200 --> 04:00:57,760 EDUCATED IN THE TRADITIONAL 7260 04:00:57,760 --> 04:01:00,160 PUBLIC SCHOOL SITUATION. 7261 04:01:00,160 --> 04:01:04,040 SO THEN HE WAS THE YUCKE YOUNGEF 7262 04:01:04,040 --> 04:01:05,480 MY PARENTS' SEVEN CHILDREN, SO 7263 04:01:05,480 --> 04:01:06,880 THEY WENT TO WORK REALLY HARD TO 7264 04:01:06,880 --> 04:01:08,840 FIND OUT WHAT ELSE WAS WRONG 7265 04:01:08,840 --> 04:01:09,960 WITH THEIR CHILD BECAUSE WHEN HE 7266 04:01:09,960 --> 04:01:12,520 WAS PUT INTO CLASSES FOR M.R. 7267 04:01:12,520 --> 04:01:14,680 STUDENTS, HE DIDN'T SHOW THE 7268 04:01:14,680 --> 04:01:17,840 SLOW DEVELOPMENT ISSUES, HE 7269 04:01:17,840 --> 04:01:20,040 WASN'T DOWN SYNDROME, HE HAD A 7270 04:01:20,040 --> 04:01:23,800 LACK OF EYE CONTACT, THE 7271 04:01:23,800 --> 04:01:24,680 ROCKING, THE COMMUNICATION 7272 04:01:24,680 --> 04:01:25,360 ISSUES. 7273 04:01:25,360 --> 04:01:27,960 HE JUST WAS NOTABLY DIFFERENT. 7274 04:01:27,960 --> 04:01:30,400 AND AT THAT TIME, AUTISM WAS NOT 7275 04:01:30,400 --> 04:01:33,480 A HOUSEHOLD WORD, YOU KNOW, AS 7276 04:01:33,480 --> 04:01:34,920 PEOPLE KNOW ABOUT AUTISM NOW. 7277 04:01:34,920 --> 04:01:37,240 I KNOW IT WAS FIRST CLASSIFIED 7278 04:01:37,240 --> 04:01:38,720 IN 1940s. 7279 04:01:38,720 --> 04:01:42,000 HOWEVER, IT JUST WASN'T A 7280 04:01:42,000 --> 04:01:43,000 WELL-KNOWN PHENOMENA AT THAT 7281 04:01:43,000 --> 04:01:43,640 TIME. 7282 04:01:43,640 --> 04:01:45,480 FORTUNATELY, WE LIVED IN 7283 04:01:45,480 --> 04:01:46,360 RALEIGH, NORTH CAROLINA, WHICH 7284 04:01:46,360 --> 04:01:51,400 IS ONLY 30 MILES FROM UNC CHAPEL 7285 04:01:51,400 --> 04:01:54,600 HILL, WHERE IN 1972, DR. SHOPLER 7286 04:01:54,600 --> 04:01:56,160 HAD BROUGHT A PROGRAM CALLED 7287 04:01:56,160 --> 04:01:58,800 TEACH TO UNC, AND TEACH STANDS 7288 04:01:58,800 --> 04:02:01,360 FOR TREATMENT AND EDUCATION OF 7289 04:02:01,360 --> 04:02:03,000 AUTISTIC AND 7290 04:02:03,000 --> 04:02:04,000 COMMUNICATION-RELATED 7291 04:02:04,000 --> 04:02:04,480 HANDICAPPED CHILDREN. 7292 04:02:04,480 --> 04:02:06,640 WELL, PETER WAS EVALUATED BY 7293 04:02:06,640 --> 04:02:07,080 TEACH. 7294 04:02:07,080 --> 04:02:09,080 AND THEN MY PARENTS BEGAN TO 7295 04:02:09,080 --> 04:02:10,400 FEEL MUCH MORE HOPEFUL ABOUT 7296 04:02:10,400 --> 04:02:13,320 WHAT COULD BE DONE FOR THEIR 7297 04:02:13,320 --> 04:02:14,840 SON, THE PROVISIONS FOR HIM. 7298 04:02:14,840 --> 04:02:19,520 ALSO IN THE EARLY 1970s, THE 7299 04:02:19,520 --> 04:02:22,240 SOCIETY FOR AUTISM, AUTISM 7300 04:02:22,240 --> 04:02:23,320 SOCIETY OF NORTH CAROLINA BEGAN, 7301 04:02:23,320 --> 04:02:24,520 AND MY PARENTS BECAME VERY 7302 04:02:24,520 --> 04:02:25,760 ACTIVE MEMBERS OF THAT. 7303 04:02:25,760 --> 04:02:28,360 MY MOTHER USED TO SAY THAT -- I 7304 04:02:28,360 --> 04:02:30,720 REMEMBER HER SAYING THAT SHE AND 7305 04:02:30,720 --> 04:02:34,200 MY FATHER HAD BEEN TO MORE 7306 04:02:34,200 --> 04:02:36,200 MEETINGS ACROSS THE STATE OF 7307 04:02:36,200 --> 04:02:37,920 NORTH CAROLINA FOR MORE COUNTIES 7308 04:02:37,920 --> 04:02:39,080 IN NORTH CAROLINA FOR THIS ONE 7309 04:02:39,080 --> 04:02:41,200 CHILD THAN ALL SEVEN OF US PUT 7310 04:02:41,200 --> 04:02:46,080 TOGETHER. 7311 04:02:46,080 --> 04:02:48,560 SO THEN PETER WAS ABLE TO GO TO 7312 04:02:48,560 --> 04:02:49,880 PUBLIC SCHOOL IN THE 1980s TO 7313 04:02:49,880 --> 04:02:51,160 A SPECIAL NEEDS SCHOOL. 7314 04:02:51,160 --> 04:02:52,280 THERE IN THIS SCHOOL, HE WAS IN 7315 04:02:52,280 --> 04:02:54,320 CLASSES FOR THE AUTISM, AND HE 7316 04:02:54,320 --> 04:02:55,920 GRADUATED IN THE EARLY 1980s, 7317 04:02:55,920 --> 04:02:57,720 AT THAT TIME, WHEN WE'RE GETTING 7318 04:02:57,720 --> 04:03:00,320 INTO THE EIGHTIES, WE'RE TALKING 7319 04:03:00,320 --> 04:03:01,760 ABOUT RAINMAN, THE SHOW COMES 7320 04:03:01,760 --> 04:03:03,560 OUT, THE MOVIE COMES OUT, AND 7321 04:03:03,560 --> 04:03:05,320 PEOPLE ARE BEING MORE EXPOSED TO 7322 04:03:05,320 --> 04:03:07,160 AUTISM, THE SOCIETY IS, AND MORE 7323 04:03:07,160 --> 04:03:11,000 PROVISIONS ARE POPPING UP. 7324 04:03:11,000 --> 04:03:12,440 REGARDLESS OF THAT, PETER WAS AT 7325 04:03:12,440 --> 04:03:13,560 HOME BY NOW, LIVING WITH MY 7326 04:03:13,560 --> 04:03:14,360 PARENTS AND THE REST OF THE 7327 04:03:14,360 --> 04:03:14,800 FAMILY. 7328 04:03:14,800 --> 04:03:17,720 HE WAS GOING TO A WORKSHOP. 7329 04:03:17,720 --> 04:03:19,560 BUT MY -- AND HE ENJOYED THE 7330 04:03:19,560 --> 04:03:21,280 WORKSHOP VERY MUCH, BUT MY 7331 04:03:21,280 --> 04:03:26,520 PARENTS NEWELL, THEY KNEW, THEYR 7332 04:03:26,520 --> 04:03:28,800 LATE '50S AND 60s AT THAT 7333 04:03:28,800 --> 04:03:30,120 TIME, KNEW THEY WOULD AGE OUT IN 7334 04:03:30,120 --> 04:03:33,280 BEING ABLE TO CARE FOR PETER. 7335 04:03:33,280 --> 04:03:34,720 SO THEY WORKED VERY HARD 7336 04:03:34,720 --> 04:03:35,760 DILIGENTLY TO SEE GROUP HOMES 7337 04:03:35,760 --> 04:03:40,640 LIKE THE ONE PETER LIVES IN NOWW 7338 04:03:40,640 --> 04:03:41,840 COME INTO FRUITION. 7339 04:03:41,840 --> 04:03:45,120 PETER IS CURRENTLY 62 YEARS OLD, 7340 04:03:45,120 --> 04:03:46,240 AND HE LIVES IN A GROUP HOME 7341 04:03:46,240 --> 04:03:48,840 WHERE WE WORK WITH THE 7342 04:03:48,840 --> 04:03:49,920 PROFESSIONAL STAFF THERE TO MAKE 7343 04:03:49,920 --> 04:03:53,280 SURE ALL PETER'S NEEDS, 7344 04:03:53,280 --> 04:03:54,160 INTELLECTUAL DEVELOPMENTAL 7345 04:03:54,160 --> 04:03:56,360 NEEDS, BEHAVIOR PROGRAMMING, 7346 04:03:56,360 --> 04:03:57,880 VOCATIONAL PROGRAM, ADAPTIVE 7347 04:03:57,880 --> 04:03:59,840 SKILLS, PSYCHOLOGICAL, 7348 04:03:59,840 --> 04:04:01,280 EMOTIONAL, SOCIAL, NUTRITIONAL, 7349 04:04:01,280 --> 04:04:03,240 AND PHYSICAL HEALTH CONCERNS ARE 7350 04:04:03,240 --> 04:04:05,280 MET. 7351 04:04:05,280 --> 04:04:07,920 PETER IS ON THE SPECTRUM, BUT 7352 04:04:07,920 --> 04:04:10,760 PETER, UNLIKE OUR OTHER GUESTS 7353 04:04:10,760 --> 04:04:13,800 SO FAR, IS INTELLECTUALLY -- 7354 04:04:13,800 --> 04:04:14,840 CANNOT SPEAK FOR HIMSELF. 7355 04:04:14,840 --> 04:04:17,800 HE SPEAKS IN -- HE CAN SAY SOME 7356 04:04:17,800 --> 04:04:19,000 PHRASES. 7357 04:04:19,000 --> 04:04:19,640 HE HAS LEARNED SOME PHRASES. 7358 04:04:19,640 --> 04:04:21,640 HE CAN TELL YOU PETER WANTS 7359 04:04:21,640 --> 04:04:23,920 SOMETHING. 7360 04:04:23,920 --> 04:04:25,240 HE CAN COMMUNICATE SOME 7361 04:04:25,240 --> 04:04:27,680 CONCERNS, BUT HE DOES NOT HAVE 7362 04:04:27,680 --> 04:04:28,680 LANGUAGE, AND YOU COULD NOT HAVE 7363 04:04:28,680 --> 04:04:31,960 A CONVERSATION WITH HIM. 7364 04:04:31,960 --> 04:04:33,160 THEREFORE, HIS FAMILY HAS TO 7365 04:04:33,160 --> 04:04:36,160 REPRESENT HIM. 7366 04:04:36,160 --> 04:04:39,880 HIS CHALLENGES ARE, TODAY, WHEN 7367 04:04:39,880 --> 04:04:41,960 WE TALK ABOUT HIS CHALLENGES, 7368 04:04:41,960 --> 04:04:44,240 HE'S 62 YEARS OLD. 7369 04:04:44,240 --> 04:04:45,640 HE'S HAD SOME TRADITIONAL HEALTH 7370 04:04:45,640 --> 04:04:47,720 CHALLENGES THAT COME WITH AGING. 7371 04:04:47,720 --> 04:04:48,920 FOR INSTANCE, JOINT HEALTH, 7372 04:04:48,920 --> 04:04:50,200 WHICH A LOT OF US IN OUR FAMILY 7373 04:04:50,200 --> 04:04:52,040 HAVE. 7374 04:04:52,040 --> 04:04:54,120 BUT BECAUSE OF HIS -- HE HAS 7375 04:04:54,120 --> 04:04:55,320 ARTHRITIS IN HIS KNEES, BUT 7376 04:04:55,320 --> 04:04:56,920 BECAUSE OF HIS LANGUAGE BARE 7377 04:04:56,920 --> 04:04:57,960 YES, IT'S HARD FOR PETER TO TELL 7378 04:04:57,960 --> 04:05:00,320 YOU THAT HE'S IN PAIN. 7379 04:05:00,320 --> 04:05:02,800 OR HE HAS A HIGH PAIN THRESHOLD, 7380 04:05:02,800 --> 04:05:04,040 SO WE'VE WORKED WITH THE 7381 04:05:04,040 --> 04:05:05,120 FACILITY AND THEY'VE COME UP 7382 04:05:05,120 --> 04:05:07,920 WITH A LOT OF VERY GOOD VISUAL 7383 04:05:07,920 --> 04:05:09,680 PROPS THAT PETER USES THAT HE 7384 04:05:09,680 --> 04:05:11,720 CAN INDICATE WHEN HE'S FEELING 7385 04:05:11,720 --> 04:05:12,560 PAIN. 7386 04:05:12,560 --> 04:05:16,120 THIS IS VERY HELPFUL. 7387 04:05:16,120 --> 04:05:19,000 ON THE OTHER HAND, PETER HAS HAD 7388 04:05:19,000 --> 04:05:20,440 SEVERAL PHYSICAL ISSUES THAT ARE 7389 04:05:20,440 --> 04:05:22,600 MORE RELATED TO HIS AUTISM. 7390 04:05:22,600 --> 04:05:28,200 PART OF PETER'S ISSUE IS THAT 7391 04:05:28,200 --> 04:05:31,040 PETER SEEKS PRESSURE, AND HE 7392 04:05:31,040 --> 04:05:31,680 PUSHES AND STRAINS WHEN GOING TO 7393 04:05:31,680 --> 04:05:32,480 THE BATHROOM. 7394 04:05:32,480 --> 04:05:33,560 THAT'S CREATED PROBLEMS. 7395 04:05:33,560 --> 04:05:37,280 ONE TIME, HE WAS GRINDING AND 7396 04:05:37,280 --> 04:05:39,760 SUCKING HIS TEETH, THAT CREATED 7397 04:05:39,760 --> 04:05:41,320 A LOT OF DENTAL ISSUES. 7398 04:05:41,320 --> 04:05:43,920 BUT GOING BACK TO THE ISSUE WITH 7399 04:05:43,920 --> 04:05:46,400 HIS STRAINING AND PUSHING, HE 7400 04:05:46,400 --> 04:05:49,160 HAD TO HAVE MAJOR SURGERY SOME 7401 04:05:49,160 --> 04:05:51,080 YEARS AGO BECAUSE OF A PROLAPSED 7402 04:05:51,080 --> 04:05:52,400 RECTUM. 7403 04:05:52,400 --> 04:05:55,560 AND THE RECTUM FLOOR WAS, YOU 7404 04:05:55,560 --> 04:05:57,600 KNOW -- THE NETTING -- THEY HAD 7405 04:05:57,600 --> 04:05:58,400 TO PUT SOME KIND OF NETTING IN 7406 04:05:58,400 --> 04:06:01,320 THERE TO BRING THE FLOOR BACK 7407 04:06:01,320 --> 04:06:03,960 UP, BECAUSE OF HIS AUTISTIC 7408 04:06:03,960 --> 04:06:04,800 BEHAVIOR, SOME OF THE THINGS HE 7409 04:06:04,800 --> 04:06:06,080 WAS DOING. 7410 04:06:06,080 --> 04:06:08,160 SO WHEN YOU HAVE A PERSON THAT 7411 04:06:08,160 --> 04:06:12,800 CAN'T EXPRESS PAIN AND HAS -- 7412 04:06:12,800 --> 04:06:14,040 KNOWING HOW TO COMMUNICATE WITH 7413 04:06:14,040 --> 04:06:14,720 HIM WAS VERY IMPORTANT. 7414 04:06:14,720 --> 04:06:16,560 SO NOT ONLY DID THEY DO THE 7415 04:06:16,560 --> 04:06:18,520 VISUAL PROGRAM, BUT THEY'VE GONE 7416 04:06:18,520 --> 04:06:20,160 THROUGH A REWARD SYSTEM TO HONOR 7417 04:06:20,160 --> 04:06:23,200 PETER FOR GOOD BEHAVIOR AND BE 7418 04:06:23,200 --> 04:06:24,400 ENCOURAGING HIM NOT TO PUSH AND 7419 04:06:24,400 --> 04:06:24,960 STRAIN. 7420 04:06:24,960 --> 04:06:26,680 HE CONSISTENTLY HAS TOILETING 7421 04:06:26,680 --> 04:06:29,080 ISSUES, THOUGH, THAT -- WHEN IT 7422 04:06:29,080 --> 04:06:31,480 COMES TO HIM SPENDING TIME WITH 7423 04:06:31,480 --> 04:06:34,000 FAMILY OR FRIENDS, THERE ARE 7424 04:06:34,000 --> 04:06:34,880 CHALLENGES WHEN YOU'RE DEALING 7425 04:06:34,880 --> 04:06:37,640 WITH A 62-YEAR-OLD AUTISTIC MAN 7426 04:06:37,640 --> 04:06:41,720 WHO STILL WEARS, YOU KNOW, 7427 04:06:41,720 --> 04:06:44,360 PROTECTIVE UNDERWEAR AND TO HELP 7428 04:06:44,360 --> 04:06:47,080 TO MAINTAIN, YOU KNOW, HEALTHY 7429 04:06:47,080 --> 04:06:49,920 HYGIENE AND SO ON. 7430 04:06:49,920 --> 04:06:51,120 ALONG WITH HEALTH, PHYSICAL 7431 04:06:51,120 --> 04:06:54,120 HEALTH ISSUES, ANXIETY, AS JOHN 7432 04:06:54,120 --> 04:06:54,920 WAS SPEAKING OF, I CAN'T AGREE 7433 04:06:54,920 --> 04:06:58,200 MORE THAT I DO BELIEVE ANXIETY 7434 04:06:58,200 --> 04:07:00,680 INCREASES WITH AGE. 7435 04:07:00,680 --> 04:07:03,080 PETER HAS BEEN AT THIS FACILITY 7436 04:07:03,080 --> 04:07:05,840 FOR 31 YEARS, AND I AM THE THIRD 7437 04:07:05,840 --> 04:07:09,480 GUARDIAN, AND I AM THE FIRST 7438 04:07:09,480 --> 04:07:11,480 GUARDIAN TO EVER PUT PETER ON 7439 04:07:11,480 --> 04:07:12,280 MEDICATION. 7440 04:07:12,280 --> 04:07:13,760 MY FATHER BEFORE ME AND MY 7441 04:07:13,760 --> 04:07:18,000 SISTER AND MY FAMILY GENERALLY 7442 04:07:18,000 --> 04:07:19,320 OBJECTED TO PETER RECEIVING 7443 04:07:19,320 --> 04:07:22,160 MEDICATION TO CONTROL ANGITE AND 7444 04:07:22,160 --> 04:07:25,800 ANXIETYAND SOME OF HIS ISSUES, T 7445 04:07:25,800 --> 04:07:27,160 WAS SHARED WITH ME THAT THEY 7446 04:07:27,160 --> 04:07:29,040 WERE CREATING MORE STRESS FOR 7447 04:07:29,040 --> 04:07:30,040 HIM. 7448 04:07:30,040 --> 04:07:30,880 THEY COULD TELL WITH HIS 7449 04:07:30,880 --> 04:07:32,200 REPETITIVE ACTIONS AND QUESTIONS 7450 04:07:32,200 --> 04:07:34,240 AND SO ON. 7451 04:07:34,240 --> 04:07:36,840 SO, THEREFORE, WE'VE ALSO -- 7452 04:07:36,840 --> 04:07:38,840 THEY ALSO USE THE SENSORY DIET 7453 04:07:38,840 --> 04:07:40,240 WHICH MY SISTER HELPED BRING TO 7454 04:07:40,240 --> 04:07:41,120 THE FACILITY AS WELL. 7455 04:07:41,120 --> 04:07:42,560 I'M SURE SOME OF YOU HAVE HEARD 7456 04:07:42,560 --> 04:07:43,720 OF THE SENSORY DIET. 7457 04:07:43,720 --> 04:07:45,680 IT'S A GROUP OF ACTIVITIES THAT 7458 04:07:45,680 --> 04:07:50,040 ARE SPECIALLY SCHEDULED INTO HIS 7459 04:07:50,040 --> 04:07:52,120 DAY TO AROUSE ADAPTIVE 7460 04:07:52,120 --> 04:07:52,680 RESPONSES. 7461 04:07:52,680 --> 04:07:54,520 HE ALSO USES THINGS LIKE 7462 04:07:54,520 --> 04:07:57,000 WEIGHTED BLANKETS, PRESSURE 7463 04:07:57,000 --> 04:07:58,200 GARMENTS LIKE TIGHT UNDERWEAR, 7464 04:07:58,200 --> 04:08:01,360 TIGHT T-SHIRTS, THINGS TO HELP 7465 04:08:01,360 --> 04:08:03,000 HIM TO DEAL WITH THE PRESSURE 7466 04:08:03,000 --> 04:08:04,520 NEEDS HE HAS. 7467 04:08:04,520 --> 04:08:07,720 ANOTHER ISSUE I HAVE IS 7468 04:08:07,720 --> 04:08:10,200 SUCCESSION AND GUARDIANSHIP. 7469 04:08:10,200 --> 04:08:13,120 LET ME ADD ONE OTHER THING TOO. 7470 04:08:13,120 --> 04:08:15,640 HIS ANXIETY ISSUES, PETER IS 7471 04:08:15,640 --> 04:08:21,440 VERY EMOTIONAL LISTENSTIVE SENSN 7472 04:08:21,440 --> 04:08:22,400 WITHOUT LANGUAGE. 7473 04:08:22,400 --> 04:08:23,720 WE HAD AN INCIDENT MANY YEARS 7474 04:08:23,720 --> 04:08:25,240 AGO WHERE HE WOULD SHOUT OUT 7475 04:08:25,240 --> 04:08:26,440 VERY ANGRY ABOUT A COUSIN, 7476 04:08:26,440 --> 04:08:27,520 WHENEVER WE WERE TOGETHER WITH 7477 04:08:27,520 --> 04:08:27,720 FAMILY. 7478 04:08:27,720 --> 04:08:28,560 WE DIDN'T KNOW WHAT HE WAS 7479 04:08:28,560 --> 04:08:30,520 TALKING ABOUT. 7480 04:08:30,520 --> 04:08:32,080 LATER ON, THE COUSIN SHARED HE 7481 04:08:32,080 --> 04:08:32,960 HAD PINCHED PETER. 7482 04:08:32,960 --> 04:08:36,320 PETER CARRIED THIS GRUDGE FOR 7483 04:08:36,320 --> 04:08:36,640 10, 15 YEARS. 7484 04:08:36,640 --> 04:08:38,040 UNTIL THAT COUSIN MADE UP WITH 7485 04:08:38,040 --> 04:08:40,240 PETER, HE WAS FINE THEN, BUT HE 7486 04:08:40,240 --> 04:08:42,000 WASN'T ABLE TO SAY THAT TO ANY 7487 04:08:42,000 --> 04:08:42,720 OF US. 7488 04:08:42,720 --> 04:08:44,000 HE COULDN'T EXPLAIN THAT TO US. 7489 04:08:44,000 --> 04:08:45,120 SO THOSE ARE SOME OF THE 7490 04:08:45,120 --> 04:08:48,120 CONCERNS WE HAVE, THE 7491 04:08:48,120 --> 04:08:48,920 COMMUNICATION NEEDS FOR PETER 7492 04:08:48,920 --> 04:08:50,360 AND HIS ANXIETY. 7493 04:08:50,360 --> 04:08:52,080 GOING ON, I ONLY HAVE A COUPLE 7494 04:08:52,080 --> 04:08:53,400 OTHERS. 7495 04:08:53,400 --> 04:08:54,160 SUCCESSION AND GUARDIANSHIP. 7496 04:08:54,160 --> 04:08:57,120 AS I MENTIONED, MY FATHER WAS 7497 04:08:57,120 --> 04:08:59,280 HIS FIRST GUARDIAN, AND HE WAS 7498 04:08:59,280 --> 04:09:00,560 HIS GUARDIAN UNTIL ABOUT 2002, 7499 04:09:00,560 --> 04:09:03,120 BEFORE HIS HEALTH, WHEN HIS 7500 04:09:03,120 --> 04:09:04,720 HEALTH STARTED TO DECLINE, AND 7501 04:09:04,720 --> 04:09:07,960 MY SISTER THEN BECAME HIS 7502 04:09:07,960 --> 04:09:09,000 GUARDIAN AND WAS HIS GUARDIAN 7503 04:09:09,000 --> 04:09:13,920 UNTIL HER UNTIMELY DEATH IN 7504 04:09:13,920 --> 04:09:14,120 2017. 7505 04:09:14,120 --> 04:09:15,000 I'VE BEEN THE GUARDIAN SINCE. 7506 04:09:15,000 --> 04:09:17,280 WE HAVE TRIED TO INVOLVE FAMILY 7507 04:09:17,280 --> 04:09:21,240 IN PETER'S INDIVIDUAL 7508 04:09:21,240 --> 04:09:22,640 PROGRAMMING MEETINGS THEY HAVE 7509 04:09:22,640 --> 04:09:25,240 AT HIS -- AT THE CLLC FOR HIM. 7510 04:09:25,240 --> 04:09:27,600 WE'RE TRYING TO KEEP THE SECOND 7511 04:09:27,600 --> 04:09:28,600 GENERATION, OUR NIECES AND 7512 04:09:28,600 --> 04:09:29,680 NEPHEWS, I DON'T HAVE MY 7513 04:09:29,680 --> 04:09:31,280 CHILDREN -- I DON'T HAVE ANY 7514 04:09:31,280 --> 04:09:32,040 CHILDREN MYSELF, BUT WE'RE 7515 04:09:32,040 --> 04:09:34,720 TRYING TO KEEP THEM INVOLVES IN 7516 04:09:34,720 --> 04:09:36,840 PETER'S NEEDS, AND PETER'S 7517 04:09:36,840 --> 04:09:38,040 CONCERNS, BECAUSE AN UNTIMELY 7518 04:09:38,040 --> 04:09:40,360 DEATH COULD HAPPEN TO ME OR ANY 7519 04:09:40,360 --> 04:09:41,520 OF US. 7520 04:09:41,520 --> 04:09:45,440 PETER HAS LOST NOT ONLY MY 7521 04:09:45,440 --> 04:09:46,760 FATHER AND MY SISTER, BUT I LOST 7522 04:09:46,760 --> 04:09:47,760 ANOTHER BROTHER LAST YEAR WHO 7523 04:09:47,760 --> 04:09:50,480 WAS PART OF HIS CARE TEAM, AND 7524 04:09:50,480 --> 04:09:52,000 THERE ARE A COUPLE OF RESIDENTS 7525 04:09:52,000 --> 04:09:53,440 AT THE FACILITY THAT HE HAS 7526 04:09:53,440 --> 04:09:54,240 LOST. 7527 04:09:54,240 --> 04:09:56,160 SO GRIEF BECOMES ANOTHER ISSUE. 7528 04:09:56,160 --> 04:09:58,880 HOW DO WE DEAL WITH GRIEF? 7529 04:09:58,880 --> 04:10:00,640 WE'VE HAD A SCRIPT AS A FAMILY 7530 04:10:00,640 --> 04:10:02,920 THAT WE'VE USED TO TRY TO HELP 7531 04:10:02,920 --> 04:10:05,240 PETER RATIONALIZE THIS LOSS. 7532 04:10:05,240 --> 04:10:07,880 WE SAY, DADDY'S GONE TO HEAVEN. 7533 04:10:07,880 --> 04:10:11,880 OUR FERN HAS GONE TO HEAVEN. 7534 04:10:11,880 --> 04:10:13,520 PETER WILL COME BACK AND SAY 7535 04:10:13,520 --> 04:10:16,520 PETER GO TO HEAVEN OR RUTHIE GO 7536 04:10:16,520 --> 04:10:16,760 TO HEAVEN. 7537 04:10:16,760 --> 04:10:18,040 HE KNOWS ONCE YOU GO, YOU DON'T 7538 04:10:18,040 --> 04:10:20,080 COME BACK. 7539 04:10:20,080 --> 04:10:23,200 WE HAVE -- OUR MOTHER IS 7540 04:10:23,200 --> 04:10:24,000 96 YEARS OLD AND I AM CONCERNED 7541 04:10:24,000 --> 04:10:25,840 AT HOW HE WILL HANDLE HER 7542 04:10:25,840 --> 04:10:28,600 IMMINENT DEATH. 7543 04:10:28,600 --> 04:10:31,000 THE OTHER ISSUE I HAVE AS FAR AS 7544 04:10:31,000 --> 04:10:32,480 A GUARDIAN MYSELF, AND THIS IS 7545 04:10:32,480 --> 04:10:34,560 WHERE THE FEDERAL ORGANIZATIONS 7546 04:10:34,560 --> 04:10:37,960 CAN BE HELPFUL, I AM ONE OF THE 7547 04:10:37,960 --> 04:10:39,800 FEW GUARDIANS AT HIS FACILITY 7548 04:10:39,800 --> 04:10:42,400 THAT MANAGE HIS FUNDS, HIS 7549 04:10:42,400 --> 04:10:43,600 SOCIAL SECURITY FUNDS AS WELL AS 7550 04:10:43,600 --> 04:10:45,480 ANY FUNDS HE RECEIVES FROM 7551 04:10:45,480 --> 04:10:48,760 WORKING AT THE FACILITY. 7552 04:10:48,760 --> 04:10:50,080 I HAVE TO ACCOUNT FOR EVERY DIME 7553 04:10:50,080 --> 04:10:52,600 I SPEND AND TURN THIS IN TO THE 7554 04:10:52,600 --> 04:10:53,320 CLERK OF COURT AND I HAVE AN 7555 04:10:53,320 --> 04:10:55,320 ATTORNEY THAT HELPS ME WITH 7556 04:10:55,320 --> 04:10:55,760 THIS. 7557 04:10:55,760 --> 04:10:57,760 BUT IN WORKING WITH THE 7558 04:10:57,760 --> 04:11:00,640 DEPARTMENT OF SOCIAL SERVICES, I 7559 04:11:00,640 --> 04:11:02,720 FIND THAT MOST OF HOW THEY WANT 7560 04:11:02,720 --> 04:11:04,680 ME TO JUSTIFY HIS INCOME IS ONLY 7561 04:11:04,680 --> 04:11:07,080 RELATED TO UNMET MEDICAL NEEDS. 7562 04:11:07,080 --> 04:11:08,600 ALMOST EXCLUSIVELY. 7563 04:11:08,600 --> 04:11:10,880 THEN I'M TOLD BY THE COURTS AS A 7564 04:11:10,880 --> 04:11:14,920 GUARDIAN I MUST BE BONDED. 7565 04:11:14,920 --> 04:11:16,120 I MUST -- I'M TO TAKE THE BOND 7566 04:11:16,120 --> 04:11:18,840 OUT OF HIS SOCIAL SECURITY 7567 04:11:18,840 --> 04:11:19,080 MONEY. 7568 04:11:19,080 --> 04:11:21,800 I'M TO TAKE THE FEES FOR HIS 7569 04:11:21,800 --> 04:11:23,160 ACCOUNTING OUT OF HIS SOCIAL 7570 04:11:23,160 --> 04:11:26,520 SECURITY FUNDS. 7571 04:11:26,520 --> 04:11:27,760 UNFORTUNATELY, THESE TWO 7572 04:11:27,760 --> 04:11:28,320 GOVERNMENT ENTITIES DO NOT 7573 04:11:28,320 --> 04:11:29,360 BRIDGE, THEY DO NOT KNOW WHAT 7574 04:11:29,360 --> 04:11:30,760 THE OTHER DOES, THEY DON'T 7575 04:11:30,760 --> 04:11:32,840 NECESSARILY AGREE WHAT WITH WHAT 7576 04:11:32,840 --> 04:11:34,240 THE OTHER DOES, SO I'M IN A 7577 04:11:34,240 --> 04:11:35,120 CURRENT SITUATION WHERE I AM 7578 04:11:35,120 --> 04:11:36,640 TRYING TO GET THIS SORTED OUT, 7579 04:11:36,640 --> 04:11:37,720 TRYING TO GET SOME 7580 04:11:37,720 --> 04:11:38,040 UNDERSTANDING. 7581 04:11:38,040 --> 04:11:38,840 I KNOW IT'S SOMETHING THAT MY 7582 04:11:38,840 --> 04:11:42,920 SISTER STRUGGLED WITH AS WELL. 7583 04:11:42,920 --> 04:11:44,200 JUST WHAT IS THE GUARDIAN 7584 04:11:44,200 --> 04:11:44,840 SUPPOSED TO DO? 7585 04:11:44,840 --> 04:11:47,040 I'M THE ESTATE GUARDIAN AS WELL 7586 04:11:47,040 --> 04:11:48,520 AS THE GUARDIAN OF THE PERSON. 7587 04:11:48,520 --> 04:11:50,960 THE LAST THING THAT CONCERNS ME 7588 04:11:50,960 --> 04:11:52,720 IS -- AND THIS IS MY LAST 7589 04:11:52,720 --> 04:11:53,800 COMMENT -- HAS TO DO WITH 7590 04:11:53,800 --> 04:11:59,360 COGNITIVE DECLINE AND DEMENTIA. 7591 04:11:59,360 --> 04:12:00,680 MY MOTHER HAS DEMENTIA AND I 7592 04:12:00,680 --> 04:12:01,640 HAVE A COUPLE BROTHERS THAT ARE 7593 04:12:01,640 --> 04:12:03,560 ALSO SHOWING SIGNS OF EARLY 7594 04:12:03,560 --> 04:12:06,240 DEMENTIA. 7595 04:12:06,240 --> 04:12:09,200 THE DIRECTOR AT CLLC ACTUALLY 7596 04:12:09,200 --> 04:12:10,840 THIS AFTERNOON AND FOR ALL THIS 7597 04:12:10,840 --> 04:12:14,760 WEEK IS IN A CONFERENCE CALLED 7598 04:12:14,760 --> 04:12:15,840 DEMENTIA-CAPABLE CARE FOR ADULTS 7599 04:12:15,840 --> 04:12:17,040 WITH IDD. 7600 04:12:17,040 --> 04:12:21,600 SO THIS IS ABOUT ADULTS THAT 7601 04:12:21,600 --> 04:12:22,680 HAVE AUTISM, THEY'RE ALREADY ON 7602 04:12:22,680 --> 04:12:24,040 THE SPECTRUM WITH COGNITIVE 7603 04:12:24,040 --> 04:12:25,680 CHALLENGES, FOR INSTANCE, THOSE 7604 04:12:25,680 --> 04:12:27,160 LIKE MY BROTHER WHO HAS A LOT OF 7605 04:12:27,160 --> 04:12:29,920 COGNITIVE CHALLENGES, AND THEN 7606 04:12:29,920 --> 04:12:31,960 YOU PUT DEMENTIA ON TOP OF THAT. 7607 04:12:31,960 --> 04:12:34,320 THAT SOUNDS LIKE A TRUE ACCIDENT 7608 04:12:34,320 --> 04:12:35,000 WAITING TO HAPPEN. 7609 04:12:35,000 --> 04:12:36,360 OR WHAT DO YOU DO WITH THAT, HOW 7610 04:12:36,360 --> 04:12:39,520 DO WE -- HOW DO WE SERVE THIS 7611 04:12:39,520 --> 04:12:43,640 POPULATION WHEN THIS IS GOING 7612 04:12:43,640 --> 04:12:44,280 ON. 7613 04:12:44,280 --> 04:12:46,600 AND THINK WE NEED TO HAVE MORE 7614 04:12:46,600 --> 04:12:47,320 RESEARCH ABOUT THAT AND CONTINUE 7615 04:12:47,320 --> 04:12:48,760 TO RESEARCH THAT SUBJECT. 7616 04:12:48,760 --> 04:12:51,080 SO I THANK YOU FOR MY TIME, FOR 7617 04:12:51,080 --> 04:12:53,480 THE TIME TO SHARE WITH YOU ABOUT 7618 04:12:53,480 --> 04:12:59,160 MY BROTHER PETER IE. 7619 04:12:59,160 --> 04:13:00,560 I I'M SORRY I DON'T HAVE 7620 04:13:00,560 --> 04:13:01,920 PICTURES OF MY WONDERFUL PARENTS 7621 04:13:01,920 --> 04:13:03,000 BUT I HOPE I SHARED SOMETHING 7622 04:13:03,000 --> 04:13:04,160 THAT WILL BE HELPFUL TO ALL. 7623 04:13:04,160 --> 04:13:05,280 >>THANK YOU VERY MUCH, 7624 04:13:05,280 --> 04:13:06,200 MS. JONES. 7625 04:13:06,200 --> 04:13:06,840 WE REALLY APPRECIATE YOU COMING 7626 04:13:06,840 --> 04:13:08,400 HERE AND TALKING ABOUT YOUR 7627 04:13:08,400 --> 04:13:10,280 FAMILY AND YOUR BROTHER. 7628 04:13:10,280 --> 04:13:14,080 NEXT UP, WE HAVE LISA MORGAN, 7629 04:13:14,080 --> 04:13:18,120 WHO IS GOING TO TALK TO US ABOUT 7630 04:13:18,120 --> 04:13:20,440 HER OWN EXPERIENCES. 7631 04:13:20,440 --> 04:13:21,080 MS. MORGAN. 7632 04:13:21,080 --> 04:13:24,480 >>THANK YOU. 7633 04:13:24,480 --> 04:13:25,920 I ALSO WANT TO THANK SUSAN 7634 04:13:25,920 --> 04:13:27,120 DANIELS FOR INVITING ME TO BE 7635 04:13:27,120 --> 04:13:28,720 PART OF THIS PANEL TODAY. 7636 04:13:28,720 --> 04:13:30,360 I WAS DIAGNOSED WITH ASPERGER'S 7637 04:13:30,360 --> 04:13:31,160 SYNDROME AT 48 YEARS OLD AND I 7638 04:13:31,160 --> 04:13:33,200 JUST WANT TO SAY I COMPLETELY 7639 04:13:33,200 --> 04:13:33,800 AGREE WITH THE OTHER PANELISTS 7640 04:13:33,800 --> 04:13:36,960 THAT MY ANGI ANXIETY IS GETTINGE 7641 04:13:36,960 --> 04:13:38,240 AS I'M GETTING OLDER. 7642 04:13:38,240 --> 04:13:40,400 I'M GOING TO BE DISCUSSING MY 7643 04:13:40,400 --> 04:13:41,280 LIVED EXPERIENCE THROUGH WHAT I 7644 04:13:41,280 --> 04:13:43,240 HAVE EXPERIENCED AND LEARNED 7645 04:13:43,240 --> 04:13:44,560 SINCE MY HUSBAND DIED BY SUICIDE 7646 04:13:44,560 --> 04:13:44,800 IN 2015. 7647 04:13:44,800 --> 04:13:46,080 THERE'S A NEED FOR CRISIS 7648 04:13:46,080 --> 04:13:47,840 SUPPORTS FOR OLDER AUTISTIC 7649 04:13:47,840 --> 04:13:48,800 ADULTS. 7650 04:13:48,800 --> 04:13:50,760 MY EXPERIENCE, MY STORY, IS 7651 04:13:50,760 --> 04:13:52,640 GOING TO BE WITHIN THE FOLLOWING 7652 04:13:52,640 --> 04:13:53,840 INFORMATION AND IT'S THE WAY 7653 04:13:53,840 --> 04:13:57,720 I'VE CHOSEN TO SHARE IT. 7654 04:13:57,720 --> 04:13:58,720 RESEARCH HAS SHOWN SUICIDE TO BE 7655 04:13:58,720 --> 04:14:00,360 A LEADING CAUSE OF DEATH FOR 7656 04:14:00,360 --> 04:14:01,480 AUTISTIC PEOPLE WITHOUT 7657 04:14:01,480 --> 04:14:02,720 INTELLECTUAL DISABILITIES ACROSS 7658 04:14:02,720 --> 04:14:03,760 THE LIFESPAN. 7659 04:14:03,760 --> 04:14:06,440 A STUDY DONE BY STUARTETH ALL IN 7660 04:14:06,440 --> 04:14:08,120 2022 WITH MIDDLE AGED OLDER 7661 04:14:08,120 --> 04:14:10,400 AUTISTIC ADULTS FOUND A 5 TO 7662 04:14:10,400 --> 04:14:12,480 6 FOLD INCREASE IN THE 7663 04:14:12,480 --> 04:14:13,800 POSSIBILITY OF SELF HARMING 7664 04:14:13,800 --> 04:14:14,760 BEHAVIORS AND SUICIDALITY THAN 7665 04:14:14,760 --> 04:14:16,600 IN THE GENERAL POPULATION OF THE 7666 04:14:16,600 --> 04:14:18,040 SAME AGE GROUP. 7667 04:14:18,040 --> 04:14:18,920 EVEN WHEN CONTROLLED FOR 7668 04:14:18,920 --> 04:14:21,080 SYMPTOMS OF DEPRESSION. 7669 04:14:21,080 --> 04:14:22,520 THIS FINDING INDICATES OLDER 7670 04:14:22,520 --> 04:14:24,680 AUTISTIC ADULTS MAY BE AT A 7671 04:14:24,680 --> 04:14:26,640 PARTICULARLY HIGH RISK OF SELF 7672 04:14:26,640 --> 04:14:29,080 HARM AND SU SUICIDAL BEHAVIORS. 7673 04:14:29,080 --> 04:14:31,920 THE UNIQUE RISK FACTORS MOST 7674 04:14:31,920 --> 04:14:33,320 COMMONLY RESEARCHED FOR AUTISTIC 7675 04:14:33,320 --> 04:14:34,880 PEOPLE ARE EVEN CHALLENGING FOR 7676 04:14:34,880 --> 04:14:37,280 OLDER AUTISTIC ADULTS. 7677 04:14:37,280 --> 04:14:37,920 MASKING, FOR INSTANCE, WHILE A 7678 04:14:37,920 --> 04:14:39,360 SOCIAL STRATEGY TO FIT IN AND 7679 04:14:39,360 --> 04:14:40,960 HAVE SUCCESS WITH SOCIAL 7680 04:14:40,960 --> 04:14:43,600 INTERACTIONS AND COMMUNICATION 7681 04:14:43,600 --> 04:14:45,120 IS A UNIQUE RISK FACTOR OF 7682 04:14:45,120 --> 04:14:46,560 SUICIDE FOR AUTISTIC PEOPLE. 7683 04:14:46,560 --> 04:14:48,040 PEOPLE DIAGNOSED WITH AUTISM AT 7684 04:14:48,040 --> 04:14:49,600 AN OLDER AGE HAS BEEN MOST 7685 04:14:49,600 --> 04:14:51,480 LIKELY MASKING FOR DECADES AND 7686 04:14:51,480 --> 04:14:52,760 RESEARCH HAS SHOWN MASKING TO 7687 04:14:52,760 --> 04:14:54,360 HAVE A NEGATIVE EFFECT ON MENTAL 7688 04:14:54,360 --> 04:14:55,040 HEALTH AS WELL. 7689 04:14:55,040 --> 04:14:56,920 AND THIS IS DUE TO THE ACTUAL 7690 04:14:56,920 --> 04:14:59,960 ACT OF MASKING, AS AUTISTIC 7691 04:14:59,960 --> 04:15:01,400 PEOPLE SUPPRESS ANY SENSORY 7692 04:15:01,400 --> 04:15:03,800 STIMULATION IN THE ENVIRONMENT 7693 04:15:03,800 --> 04:15:04,560 WHILE THEY CHANGE THEIR NATURAL 7694 04:15:04,560 --> 04:15:06,960 WAY OF BEING TO LOOK AND ACT 7695 04:15:06,960 --> 04:15:07,840 NON-AUTISTIC, PUT THE CORRECT 7696 04:15:07,840 --> 04:15:09,040 EMOTION ON THEIR FACES AND KEEP 7697 04:15:09,040 --> 04:15:11,120 UP WITH WHATEVER SOCIAL EVENT 7698 04:15:11,120 --> 04:15:12,560 THEY'RE PARTICIPATING IN. 7699 04:15:12,560 --> 04:15:13,720 IT'S EXHAUSTING. 7700 04:15:13,720 --> 04:15:15,160 AUTISTIC PEOPLE USUALLY NEED TO 7701 04:15:15,160 --> 04:15:16,760 WITHDRAW AND REGULATE FOR 7702 04:15:16,760 --> 04:15:18,680 SELF-CARE AFTER SOCIAL EVENTS, 7703 04:15:18,680 --> 04:15:20,080 SCHOOL DAY OR WORK, DUE TO HOW 7704 04:15:20,080 --> 04:15:22,240 EXHAUSTING MASKING CAN BE. 7705 04:15:22,240 --> 04:15:24,840 AS WELL, THEY, WE, ARE NOT 7706 04:15:24,840 --> 04:15:26,160 GETTING THE BENEFIT OF 7707 04:15:26,160 --> 04:15:27,280 COMPANIONSHIP AND RELATIONSHIP 7708 04:15:27,280 --> 04:15:29,640 WHILE MASKING BECAUSE WE'RE NOT 7709 04:15:29,640 --> 04:15:30,440 BEING ABLE TO BE OUR TRUE 7710 04:15:30,440 --> 04:15:34,040 SELVES, WHICH IN THE END, WHILE 7711 04:15:34,040 --> 04:15:35,560 WE MAY HAVE PARTICIPATED 7712 04:15:35,560 --> 04:15:39,200 SUCCESSFULLY IN A SOCIAL EVENT, 7713 04:15:39,200 --> 04:15:40,360 NO ONE ACTUALLY MEET US, THE 7714 04:15:40,360 --> 04:15:42,320 CHOICE TO BE KNOWN FOR WHO YOU 7715 04:15:42,320 --> 04:15:44,320 ARE AS AN AUTISTIC PERSON AND 7716 04:15:44,320 --> 04:15:46,160 TAKE THE CHANCE OF BEING 7717 04:15:46,160 --> 04:15:48,040 REJECTED OR AT THE VERY LEAST 7718 04:15:48,040 --> 04:15:50,320 NOT ACCEPTED OR MASK AND NOT BE 7719 04:15:50,320 --> 04:15:52,600 KNOWN FOR WHO YOU ARE AS A 7720 04:15:52,600 --> 04:15:53,120 PERSON. 7721 04:15:53,120 --> 04:15:54,600 NUMBER OF UNMET SUPPORT NEEDS IS 7722 04:15:54,600 --> 04:15:57,280 ALSO A UNIQUE RISK FACTOR OF SUE 7723 04:15:57,280 --> 04:15:58,920 SUICIDE FOR AUTISTIC PEOPLE. 7724 04:15:58,920 --> 04:16:00,240 UNDIAGNOSED OR NEWLY DIAGNOSED 7725 04:16:00,240 --> 04:16:03,080 OLDER AUTISTIC ADULTS MAY HAVE 7726 04:16:03,080 --> 04:16:04,440 DIFFICULTY OBTAINING OR 7727 04:16:04,440 --> 04:16:05,160 ACCESSING SUPPORT SERVICES THAT 7728 04:16:05,160 --> 04:16:08,560 CAN HELP THEM WITH HOUSING, 7729 04:16:08,560 --> 04:16:11,840 EMPLOYMENT, PHYSICAL, MEDICAL 7730 04:16:11,840 --> 04:16:12,920 HEALTHCARE, INCLUDING THERAPY OR 7731 04:16:12,920 --> 04:16:15,120 OTHER FORMS OF MENTAL 7732 04:16:15,120 --> 04:16:15,440 HEALTHCARE. 7733 04:16:15,440 --> 04:16:17,080 THERE WAS A NATIONAL STUDY DONE 7734 04:16:17,080 --> 04:16:19,400 IN DENMARK IN 2016 THAT FOUND 7735 04:16:19,400 --> 04:16:20,840 THAT 90% OF THE AUTISTIC PEOPLE 7736 04:16:20,840 --> 04:16:23,120 IN THE STUDY HAD CO-OCCURRING 7737 04:16:23,120 --> 04:16:24,520 MENTAL HEALTH CONDITIONS WITH 7738 04:16:24,520 --> 04:16:27,360 ANXIETY BEING THE MOST 7739 04:16:27,360 --> 04:16:27,760 PREVALENT. 7740 04:16:27,760 --> 04:16:30,000 SOME OF THE REASONS FOR THE 7741 04:16:30,000 --> 04:16:30,760 DIFFICULTY IS CHALLENGES WITH 7742 04:16:30,760 --> 04:16:32,200 EXECUTIVE FUNCTIONING SKILLS, 7743 04:16:32,200 --> 04:16:33,600 DAILY LIVING SKILLS AND THE 7744 04:16:33,600 --> 04:16:34,440 SOCIAL SKILLS NEEDED TO REACH 7745 04:16:34,440 --> 04:16:36,520 OUT FOR SUPPORT SERVICES. 7746 04:16:36,520 --> 04:16:37,840 KNOWING WHO TO CALL, WHAT TO 7747 04:16:37,840 --> 04:16:39,160 SAY, OR EVEN WHAT MIGHT BE 7748 04:16:39,160 --> 04:16:41,840 IMPORTANT TO REMEMBER CAN BE 7749 04:16:41,840 --> 04:16:42,800 DIFFICULT FOR OLDER AUTISTIC 7750 04:16:42,800 --> 04:16:43,720 PEOPLE WHO HAVE NEVER DONE 7751 04:16:43,720 --> 04:16:47,240 ANYTHING LIKE THAT BEFORE. 7752 04:16:47,240 --> 04:16:48,760 FOLLOW-UP APPOINTMENTS, 7753 04:16:48,760 --> 04:16:49,320 COMPLICATED DIRECTIONS AND 7754 04:16:49,320 --> 04:16:50,080 SIMPLY USING THE PHONE TO 7755 04:16:50,080 --> 04:16:51,080 COMMUNICATE CAN BE SO DAUNTING 7756 04:16:51,080 --> 04:16:52,920 THAT OLDER AUTISTIC ADULTS 7757 04:16:52,920 --> 04:16:57,280 SIMPLY DO NOT OR CANNOT DO IT. 7758 04:16:57,280 --> 04:16:59,680 OLDER AUTISTIC PEOPLE CAN ALSO 7759 04:16:59,680 --> 04:17:00,320 FIND BENEFITS IN ESTABLISHING A 7760 04:17:00,320 --> 04:17:02,200 SAFETY NET OF SUPPORT PEOPLE BUT 7761 04:17:02,200 --> 04:17:03,960 DUE TO SOCIAL COMMUNICATION 7762 04:17:03,960 --> 04:17:06,080 DIFFICULTIES AND THE ISOLATION 7763 04:17:06,080 --> 04:17:07,560 THAT CAN COME AS PEOPLE GET 7764 04:17:07,560 --> 04:17:09,760 OLDER AND MORE RESTRICTED TO 7765 04:17:09,760 --> 04:17:11,280 HOME, IT CAN BE VERY DIFFICULT 7766 04:17:11,280 --> 04:17:14,000 TO DEVELOP A SUPPORT NETWORK. 7767 04:17:14,000 --> 04:17:16,440 SOCIAL ISOLATION OR -- BELONGING 7768 04:17:16,440 --> 04:17:18,280 ARE ALSO UNIQUE FACTORS OF 7769 04:17:18,280 --> 04:17:21,440 SUICIDE FOR AUTISTIC PEOPLE. 7770 04:17:21,440 --> 04:17:23,400 ACCORDING TO CDC DATA, SOME 40% 7771 04:17:23,400 --> 04:17:25,600 OF OLDER AUTISTIC ADULTS SPEND 7772 04:17:25,600 --> 04:17:27,480 LITTLE OR NO TIME WITH FRIENDS. 7773 04:17:27,480 --> 04:17:29,840 I'VE SEEN THAT FIRSTHAND AS A 7774 04:17:29,840 --> 04:17:30,840 FACILITATOR OF A SUPPORT GROUP 7775 04:17:30,840 --> 04:17:33,160 FOR OLDER AUTISTIC WOMEN. 7776 04:17:33,160 --> 04:17:35,240 THE SUPPORT GROUP IS THE ONLY 7777 04:17:35,240 --> 04:17:36,120 SOCIAL EVENT SOME OF THE WOMEN 7778 04:17:36,120 --> 04:17:37,720 ATTEND AND WE MEET ONCE A MONTH 7779 04:17:37,720 --> 04:17:39,720 FOR AN HOUR AND A HALF. 7780 04:17:39,720 --> 04:17:41,240 ALSO MANY ONLINE SUPPORT GROUPS 7781 04:17:41,240 --> 04:17:43,520 FILL UP QUICKLY AND THERE'S 7782 04:17:43,520 --> 04:17:47,360 REALLY A NEED FOR MORE ONLINE 7783 04:17:47,360 --> 04:17:48,040 SUPPORT. 7784 04:17:48,040 --> 04:17:50,200 OTHER UNIQUE RISK FACTORS OF 7785 04:17:50,200 --> 04:17:52,800 SUICIDE FOR AUTISTIC PEOPLE ARE 7786 04:17:52,800 --> 04:17:54,720 BEING DIAGNOSED LATER IN LIFE, 7787 04:17:54,720 --> 04:17:55,720 BEING AN AUTISTIC FEMALE. 7788 04:17:55,720 --> 04:17:57,400 SOME OF THE REASONS ARE DUE TO A 7789 04:17:57,400 --> 04:18:00,480 LIFETIME OF NEGATIVE SOCIAL 7790 04:18:00,480 --> 04:18:02,440 EXPERIENCES: NOT BELONGING, 7791 04:18:02,440 --> 04:18:04,120 BEING OSTRACIZED, KNOWING 7792 04:18:04,120 --> 04:18:04,640 THEY'RE DIFFERENT BUT NOT 7793 04:18:04,640 --> 04:18:06,520 KNOWING WHY, LONELINESS, DAILY 7794 04:18:06,520 --> 04:18:08,920 STRUGGLES TO JUST BE, RESULTING 7795 04:18:08,920 --> 04:18:10,880 IN UNRESOLVED TRAUMA, PTSD AND 7796 04:18:10,880 --> 04:18:13,280 AUTISM BURNOUT. 7797 04:18:13,280 --> 04:18:16,120 AUTISM BURNOUT IS A SYNDROME OF 7798 04:18:16,120 --> 04:18:20,720 CON SCONSTANT EXHAUSTION, LOSS F 7799 04:18:20,720 --> 04:18:22,680 SKILLS AND REDUCED TOLERANCE -- 7800 04:18:22,680 --> 04:18:24,160 DUE TO THE DEMANDS OF LIFE 7801 04:18:24,160 --> 04:18:25,000 CHRONICALLY OUTWEIGHING THE 7802 04:18:25,000 --> 04:18:26,920 ABILITY TO COPE AND LACK OF 7803 04:18:26,920 --> 04:18:28,920 SUPPORT. 7804 04:18:28,920 --> 04:18:31,480 RESULTS FROM A STUDY DONE BY 7805 04:18:31,480 --> 04:18:33,840 RAINMAKER E ET AL. IN TWEP 20 7806 04:18:33,840 --> 04:18:37,480 FOUND THAT MASKING AS WELL AS 7807 04:18:37,480 --> 04:18:40,000 EXPERIENCING STIGMATIZATION CAN 7808 04:18:40,000 --> 04:18:41,280 LEAD TO AUTISM BURNOUT WHICH CAN 7809 04:18:41,280 --> 04:18:48,480 LEAD TO SUICIDAL -- CULTURAL 7810 04:18:48,480 --> 04:18:50,680 COMPETENCE AND HUMILITY WHILE 7811 04:18:50,680 --> 04:18:51,560 SUPPORTING THEM. 7812 04:18:51,560 --> 04:18:52,680 ALSO UNDERSTANDING THAT AUTISM 7813 04:18:52,680 --> 04:18:53,960 HAS ITS OWN STRENGTHS AND 7814 04:18:53,960 --> 04:18:55,480 CHALLENGES CAN HELP WITH 7815 04:18:55,480 --> 04:18:56,920 COMMUNICATING AND SUPPORTING 7816 04:18:56,920 --> 04:18:58,360 AUTISTIC PEOPLE, AND SOME OF THE 7817 04:18:58,360 --> 04:18:59,520 STRENGTHS OF AUTISTIC PEOPLE CAN 7818 04:18:59,520 --> 04:19:02,080 BE USED TO HELP DURING A CRISIS. 7819 04:19:02,080 --> 04:19:05,560 SUCH AS BEING RULE-BASED OR 7820 04:19:05,560 --> 04:19:06,760 ADHERENCE TO ROUTINES, THESE 7821 04:19:06,760 --> 04:19:08,840 STRENGTHS CAN BE HELPFUL WHEN 7822 04:19:08,840 --> 04:19:09,400 THE USE OF A SAFETY PLAN IS 7823 04:19:09,400 --> 04:19:14,880 CRUCIAL TO STAYING SAFE. 7824 04:19:14,880 --> 04:19:19,000 HONESTY IS A STRENGTH IN 7825 04:19:19,000 --> 04:19:21,240 SUICIDAL INTENT. 7826 04:19:21,240 --> 04:19:22,560 USING A SAFETY PLAN WOULD BE 7827 04:19:22,560 --> 04:19:24,640 FAIR TO ONE'S SELF OR ONE'S 7828 04:19:24,640 --> 04:19:25,240 FAMILY. 7829 04:19:25,240 --> 04:19:28,200 PASSIONS CAN BE REASONS FOR 7830 04:19:28,200 --> 04:19:28,680 LIVING. 7831 04:19:28,680 --> 04:19:29,880 BEING DETAIL ORIENTED CAN BE 7832 04:19:29,880 --> 04:19:32,960 USEFUL IN KNOWING WHEN TO GET 7833 04:19:32,960 --> 04:19:34,400 SUPPORT TO IMPLEMENT A SAFETY 7834 04:19:34,400 --> 04:19:34,600 PLAN. 7835 04:19:34,600 --> 04:19:35,400 CREATIVITY IN PROBLEM SOLVING 7836 04:19:35,400 --> 04:19:37,760 CAN BE USEFUL FOR EVERY ASPECT 7837 04:19:37,760 --> 04:19:39,560 OF STAYING SAFE IN A SUICIDAL 7838 04:19:39,560 --> 04:19:39,760 CRISIS. 7839 04:19:39,760 --> 04:19:40,560 THERE ARE ALSO RESOURCES 7840 04:19:40,560 --> 04:19:42,520 AVAILABLE TO HELP PROFESSIONALS 7841 04:19:42,520 --> 04:19:43,480 COMMUNICATE WITH AUTISTIC PEOPLE 7842 04:19:43,480 --> 04:19:44,040 IN CRISIS. 7843 04:19:44,040 --> 04:19:46,800 THE CRISIS SUPPORTS THE AUTISM 7844 04:19:46,800 --> 04:19:48,520 COMMUNITY TOOLKIT DEVELOPED BY 7845 04:19:48,520 --> 04:19:49,160 THE AUTISM AND SUICIDE COMMITTEE 7846 04:19:49,160 --> 04:19:50,920 OF THE AMERICAN ASSOCIATION OF 7847 04:19:50,920 --> 04:19:52,560 SUICIDOLOGY IS BEING USED IN 7848 04:19:52,560 --> 04:19:54,440 CRISIS CENTERS ACROSS THE 7849 04:19:54,440 --> 04:19:54,840 NATION. 7850 04:19:54,840 --> 04:19:56,600 TO BOTH IDENTIFY AND COMMUNICATE 7851 04:19:56,600 --> 04:19:59,040 WITH AUTISTIC PEOPLE IN CRISIS. 7852 04:19:59,040 --> 04:20:00,480 THE TOOLKIT IS ALSO BEING USED 7853 04:20:00,480 --> 04:20:03,000 BY OTHER PROFESSIONALS AND EVEN 7854 04:20:03,000 --> 04:20:03,760 FAMILY AND FRIENDS. 7855 04:20:03,760 --> 04:20:05,680 SOMETIMES THAT'S THE ONLY THING 7856 04:20:05,680 --> 04:20:06,360 OLDER AUTISTIC PEOPLE ADULTS 7857 04:20:06,360 --> 04:20:08,560 HAVE IS THE -- YOU KNOW, THE 7858 04:20:08,560 --> 04:20:11,840 CRISIS CALL LINES AND TEXT 7859 04:20:11,840 --> 04:20:13,280 LINES. 7860 04:20:13,280 --> 04:20:14,240 MORE ONLINE SUPPORT GROUPS, 7861 04:20:14,240 --> 04:20:15,400 SOCIAL EVENTS AND EVEN EDUCATION 7862 04:20:15,400 --> 04:20:16,560 ABOUT HOW TO REACH OUT FOR 7863 04:20:16,560 --> 04:20:18,760 SUPPORT NEEDS, BUILD A SUPPORT 7864 04:20:18,760 --> 04:20:19,520 NETWORK, FINANCIAL INFORMATION, 7865 04:20:19,520 --> 04:20:21,600 DAILY LIVING SKILLS, 7866 04:20:21,600 --> 04:20:22,800 COMMUNICATION SKILLS AND MANY 7867 04:20:22,800 --> 04:20:25,800 OTHER TOPICS CAN HELP OLDER 7868 04:20:25,800 --> 04:20:28,560 AUTISTIC ADULTS HELP THEMSELVES. 7869 04:20:28,560 --> 04:20:30,200 FOR EXAMPLE, THE WEBSITE AUTISM 7870 04:20:30,200 --> 04:20:33,240 AND GRIEVE.ORG THAT RUTH JUST 7871 04:20:33,240 --> 04:20:35,200 BROUGHT UP ABOUT HER BROTHER, 7872 04:20:35,200 --> 04:20:35,880 UNDERSTANDING LOSS, THAT HAPPENS 7873 04:20:35,880 --> 04:20:38,880 FOR A LOT OF AUTISTIC PEOPLE. 7874 04:20:38,880 --> 04:20:40,120 IT'S THE FIRST TOOL OF ITS KIND 7875 04:20:40,120 --> 04:20:43,080 AND HELPS AUTISTIC PEOPLE WHO 7876 04:20:43,080 --> 04:20:46,480 ARE DEALING WITH GRIEVING AND 7877 04:20:46,480 --> 04:20:48,200 LOSS. 7878 04:20:48,200 --> 04:20:49,200 THEY CAN BE ISOLATED AND HAVE NO 7879 04:20:49,200 --> 04:20:50,640 ONE TO ASK ABOUT GRIEF AND LOSS. 7880 04:20:50,640 --> 04:20:53,160 SO WE NEED MORE TOOLS LIKE THIS 7881 04:20:53,160 --> 04:20:54,360 WEBSITE TO SUPPORT OLDER 7882 04:20:54,360 --> 04:20:55,320 AUTISTIC PEOPLE IN OTHER AREAS 7883 04:20:55,320 --> 04:20:56,000 OF THEIR LIFE. 7884 04:20:56,000 --> 04:20:56,520 THAT'S IT FOR ME. 7885 04:20:56,520 --> 04:21:01,680 THANK YOU. 7886 04:21:01,680 --> 04:21:04,520 >>THANK YOU VERY MUCH, 7887 04:21:04,520 --> 04:21:04,840 MS. MORGAN. 7888 04:21:04,840 --> 04:21:11,640 FINALLY, IACC STAFF PERSON ONI 7889 04:21:11,640 --> 04:21:15,360 CELESTIN ARE READ COMMENTS FROM 7890 04:21:15,360 --> 04:21:15,880 MS. SWEZEY. 7891 04:21:15,880 --> 04:21:18,720 >>GOOD AFTERNOON, EVERYONE. 7892 04:21:18,720 --> 04:21:21,280 THE FOLLOWING WAS SUBMITTED BY 7893 04:21:21,280 --> 04:21:22,920 MS. SUE SWEZEY FOR CONSIDERATION 7894 04:21:22,920 --> 04:21:23,200 BY THE IACC. 7895 04:21:23,200 --> 04:21:24,360 I APPRECIATE THE CHANCE TO 7896 04:21:24,360 --> 04:21:25,760 COMMENT ON THE WORK AND GOALS OF 7897 04:21:25,760 --> 04:21:27,000 THE IACC, EVEN THOUGH I CANNOT 7898 04:21:27,000 --> 04:21:28,800 ATTEND THE MEETING. 7899 04:21:28,800 --> 04:21:31,440 AS THE PARENT OF A 59-YEAR-OLD 7900 04:21:31,440 --> 04:21:33,720 AUTISTIC SON, I HAVE EXPERIENCED 7901 04:21:33,720 --> 04:21:35,200 THE ENTIRE RANGE OF AUTISM 7902 04:21:35,200 --> 04:21:37,440 SERVICES OR LACK OF THEM FROM 7903 04:21:37,440 --> 04:21:39,800 THEIR BEGINNINGS IN THE 1960s. 7904 04:21:39,800 --> 04:21:43,400 WHILE PROGRESS HAS BEEN MADE, 7905 04:21:43,400 --> 04:21:45,560 THERE ARE STILL TERRIFYING GAPS 7906 04:21:45,560 --> 04:21:47,000 IN THE FUTURE FOR ADULTS ON THE 7907 04:21:47,000 --> 04:21:48,440 SPECTRUM AND FOR THEIR FAMILIES. 7908 04:21:48,440 --> 04:21:50,080 VERY FEW PARENTS FIND IT EASY TO 7909 04:21:50,080 --> 04:21:52,040 LOCATE RESIDENTIAL PLACEMENT FOR 7910 04:21:52,040 --> 04:21:53,360 THEIR ADULT CHILDREN. 7911 04:21:53,360 --> 04:21:56,560 IN FACT, THE PROCESS IS OFTEN 7912 04:21:56,560 --> 04:21:58,160 HARROWING AND FRUITLESS, WITH 7913 04:21:58,160 --> 04:21:58,800 FEW APPROPRIATE SERVICES 7914 04:21:58,800 --> 04:22:00,520 AVAILABLE, AND WITH LONG DELAYS 7915 04:22:00,520 --> 04:22:02,800 AND WAITING LISTS. 7916 04:22:02,800 --> 04:22:04,200 WHILE THERE SEEM TO BE AN 7917 04:22:04,200 --> 04:22:05,600 INCREASING NUMBER OF ACCEPTABLE 7918 04:22:05,600 --> 04:22:07,160 GROUP HOMES, THERE ARE STILL 7919 04:22:07,160 --> 04:22:09,240 HORROR STORIES OF STAFF 7920 04:22:09,240 --> 04:22:10,800 SHORTAGES, UNTRAINED AND 7921 04:22:10,800 --> 04:22:13,440 UNQUALIFIED STAFF, INADEQUATE 7922 04:22:13,440 --> 04:22:15,080 SERVICES AND ACTIVITIES, AND 7923 04:22:15,080 --> 04:22:17,680 SOMETIMES ABUSE. 7924 04:22:17,680 --> 04:22:18,880 IN ADDITION, QUALITY DAY 7925 04:22:18,880 --> 04:22:20,600 PROGRAMS AND ACTIVITIES ARE HARD 7926 04:22:20,600 --> 04:22:22,280 TO FIND. 7927 04:22:22,280 --> 04:22:23,280 COVID AND NEW FEDERAL 7928 04:22:23,280 --> 04:22:26,120 REGULATIONS HAVE TAKEN A TOLL. 7929 04:22:26,120 --> 04:22:29,320 THE RESULT FOR TW TOO MANY PARES 7930 04:22:29,320 --> 04:22:30,360 IS THAT AS THE CLIENTS AGE, 7931 04:22:30,360 --> 04:22:31,720 FAMILIES MAY AGE FASTER. 7932 04:22:31,720 --> 04:22:33,000 SOME PARENTS MAY DIE BEFORE 7933 04:22:33,000 --> 04:22:35,760 THEIR ADULTS ARE SECURE. 7934 04:22:35,760 --> 04:22:36,840 WHILE OTHER PARENTS MAY NEED AS 7935 04:22:36,840 --> 04:22:40,600 MUCH OR MORE CARE THAN THEIR 7936 04:22:40,600 --> 04:22:42,520 CHILDREN. 7937 04:22:42,520 --> 04:22:43,640 MOST DRASTICALLY AFFECTED ARE 7938 04:22:43,640 --> 04:22:45,520 THE OLDEST AUTISTIC CLIENTS AND 7939 04:22:45,520 --> 04:22:45,920 THEIR FAMILIES. 7940 04:22:45,920 --> 04:22:47,880 WHEN MY SON WAS BORN, THE AUTISM 7941 04:22:47,880 --> 04:22:50,240 INCIDENCE WAS 4 IN 10,000. 7942 04:22:50,240 --> 04:22:52,080 AS OPPOSED TO TODAY'S 7943 04:22:52,080 --> 04:22:53,360 ASTONISHING 1 IN 44. 7944 04:22:53,360 --> 04:22:55,240 THE AUTISM SOCIETY OF AMERICA 7945 04:22:55,240 --> 04:22:58,840 WAS THEN KNOWN AS NSAC, THE 7946 04:22:58,840 --> 04:23:00,360 NATIONAL SOCIETY FOR AUTISTIC 7947 04:23:00,360 --> 04:23:00,720 CHILDREN. 7948 04:23:00,720 --> 04:23:02,560 BECAUSE THERE WERE SO FEW KNOWN 7949 04:23:02,560 --> 04:23:04,520 ADULTS. 7950 04:23:04,520 --> 04:23:06,160 TODAY'S ADULTS 60 AND OLDER ARE 7951 04:23:06,160 --> 04:23:07,800 INDEED THE TIP OF THE ICEBERG. 7952 04:23:07,800 --> 04:23:10,640 THEY ARE THE LEAD DUCKS FOR THE 7953 04:23:10,640 --> 04:23:11,840 INCREDIBLY SWOLLEN NUMBERS WHO 7954 04:23:11,840 --> 04:23:12,600 FOLLOW. 7955 04:23:12,600 --> 04:23:14,840 THEY SET A PRECEDENT, AND 7956 04:23:14,840 --> 04:23:16,120 CONSIDERING THE PRESENT SHORTAGE 7957 04:23:16,120 --> 04:23:19,440 OF SERVICES, IT IS NOT AN 7958 04:23:19,440 --> 04:23:19,880 ENCOURAGING ONE. 7959 04:23:19,880 --> 04:23:22,160 I AM GRATIFIED THAT THE IACC IS 7960 04:23:22,160 --> 04:23:22,880 CONSIDERING AUTISM NEEDS AT THE 7961 04:23:22,880 --> 04:23:24,760 FEDERAL LEVEL. 7962 04:23:24,760 --> 04:23:26,640 THIS IS AN IMPORTANT STEP 7963 04:23:26,640 --> 04:23:27,200 FORWARD. 7964 04:23:27,200 --> 04:23:29,360 I ENCOURAGE THIS TASK FORCE TO 7965 04:23:29,360 --> 04:23:30,920 EXAMINE THE ENTIRE SPECTRUM OF 7966 04:23:30,920 --> 04:23:32,720 AUTISM NEEDS AND ABILITIES, AND 7967 04:23:32,720 --> 04:23:35,080 TO FOCUS ATTENTION ON THE MOST 7968 04:23:35,080 --> 04:23:38,000 SEVERELY CHALLENGED WHO HAVE 7969 04:23:38,000 --> 04:23:39,800 BEEN LEFT BEHIND FOR SO LONG. 7970 04:23:39,800 --> 04:23:40,680 PARENTHETICALLY IN TODAY'S 7971 04:23:40,680 --> 04:23:43,720 WORLD, MUCH ATTENTION HAS BEEN 7972 04:23:43,720 --> 04:23:45,680 PAID TO AUTISTIC INDIVIDUALS WHO 7973 04:23:45,680 --> 04:23:47,000 ARE HIGH ACHIEVERS. 7974 04:23:47,000 --> 04:23:48,080 PERHAPS SOME HAVE ATTENDED 7975 04:23:48,080 --> 04:23:50,160 COLLEGE AND HAVE HELD JOBS. 7976 04:23:50,160 --> 04:23:52,440 SOME ARE EXTREMELY BRIGHT AND 7977 04:23:52,440 --> 04:23:55,200 VERY VERBAL. 7978 04:23:55,200 --> 04:23:56,400 THIS SEGMENT OF THE AUTISM 7979 04:23:56,400 --> 04:23:57,480 POPULATION WAS NOT INCLUDED IN 7980 04:23:57,480 --> 04:23:59,040 EARLY AUTISM STUDIES, WHICH 7981 04:23:59,040 --> 04:24:00,320 FOCUSED ON CHILDREN WITH FAR 7982 04:24:00,320 --> 04:24:01,680 GREATER DIFFERENCES. 7983 04:24:01,680 --> 04:24:02,880 THE HIGH ACHIEVERS MAY NEVER 7984 04:24:02,880 --> 04:24:04,160 HAVE ENCOUNTERED ANY OF THESE 7985 04:24:04,160 --> 04:24:05,040 INDIVIDUALS. 7986 04:24:05,040 --> 04:24:10,320 THEY DESERVE PLAWS APPLAUSE FOR 7987 04:24:10,320 --> 04:24:11,960 ACCOMPLISHMENTS BUT ARE PROBABLY 7988 04:24:11,960 --> 04:24:13,800 NOT OBSERVERS OF THE TOTAL 7989 04:24:13,800 --> 04:24:14,200 AUTISM XENO. 7990 04:24:14,200 --> 04:24:16,000 BEST OF LUCK TO THE IACC. 7991 04:24:16,000 --> 04:24:17,400 I HOPE TO HEAR POSITIVE RESULTS. 7992 04:24:17,400 --> 04:24:18,520 PLEASE FEEL FREE TO CONTACT ME 7993 04:24:18,520 --> 04:24:19,720 IF I CAN PROVIDE FURTHER 7994 04:24:19,720 --> 04:24:20,520 INFORMATION. 7995 04:24:20,520 --> 04:24:23,880 BEST REGARDS, SUE SWEZEY. 7996 04:24:23,880 --> 04:24:25,840 >>THANK YOU, ONI, FOR READING 7997 04:24:25,840 --> 04:24:27,280 THAT, AND THANK YOU TO SUE FOR 7998 04:24:27,280 --> 04:24:31,960 JOINING US THROUGH THAT WRITTEN 7999 04:24:31,960 --> 04:24:32,520 CONVERSATION. 8000 04:24:32,520 --> 04:24:34,040 WE'RE NOW GOING TO TURN OUR 8001 04:24:34,040 --> 04:24:35,120 ATTENTION TO HEAR A BRIEF 8002 04:24:35,120 --> 04:24:36,920 OVERVIEW OF RESEARCH ON AUTISM 8003 04:24:36,920 --> 04:24:39,320 IN OLDER AGE. 8004 04:24:39,320 --> 04:24:41,160 JOINING US TO GIVE US THIS BRIEF 8005 04:24:41,160 --> 04:24:46,640 OVERVIEW ARE DR. JOE PIVEN, THE 8006 04:24:46,640 --> 04:24:49,040 THOMAS CASTELLOE DISTINGUISHED 8007 04:24:49,040 --> 04:24:51,360 PROFESSOR OF PSYCHIATRY AND 8008 04:24:51,360 --> 04:24:59,240 DIRECTOR OF THE K. 8009 04:24:59,240 --> 04:25:02,560 DR. PIVEN, AS YOU KNOW, IS AN 8010 04:25:02,560 --> 04:25:04,160 IACC MEMBER HIMSELF. 8011 04:25:04,160 --> 04:25:10,360 JOINING DR. PIVEN IS DR. MARSHA 8012 04:25:10,360 --> 04:25:11,360 MAILICK, PROFESSOR AND VICE 8013 04:25:11,360 --> 04:25:12,800 CHANCELLOR FOR RESEARCH AND 8014 04:25:12,800 --> 04:25:14,120 GRADUATE EDUCATION AT THE 8015 04:25:14,120 --> 04:25:16,600 EMERITUS WAISMAN CENTER AT THE 8016 04:25:16,600 --> 04:25:17,280 UNIVERSITY OF WISCONSIN-MADISON. 8017 04:25:17,280 --> 04:25:18,920 THEY'LL BE SHARING AN OVERVIEW 8018 04:25:18,920 --> 04:25:21,000 OF RESEARCH ON OLDER AGE AND 8019 04:25:21,000 --> 04:25:21,640 AUTISM. 8020 04:25:21,640 --> 04:25:24,520 THANK YOU, JOE, MARSHA? 8021 04:25:24,520 --> 04:25:32,160 >>THANK YOU. 8022 04:25:32,160 --> 04:25:33,560 FIRST I WANT TO THANK THIS 8023 04:25:33,560 --> 04:25:34,680 COMMITTEE FOR INCLUDING THIS 8024 04:25:34,680 --> 04:25:35,520 TOPIC AND OF COURSE FOR THE 8025 04:25:35,520 --> 04:25:35,840 INVITATION. 8026 04:25:35,840 --> 04:25:38,840 I WANT TO ACKNOWLEDGE MY 8027 04:25:38,840 --> 04:25:41,440 EXPERIENCE WORKING WITH SUSAN 8028 04:25:41,440 --> 04:25:42,640 DANIELS OVER THE LAST FEW 8029 04:25:42,640 --> 04:25:44,080 MONTHS, AND ALL THE WORK THAT 8030 04:25:44,080 --> 04:25:46,800 SHE'S PUT IN TO PULL THIS 8031 04:25:46,800 --> 04:25:48,120 TOGETHER. 8032 04:25:48,120 --> 04:25:49,560 AND THEN, OF COURSE, I WANTED TO 8033 04:25:49,560 --> 04:25:51,400 THANK MY COLLEAGUE, MARSHA 8034 04:25:51,400 --> 04:26:01,920 MAILICK, FOR JOINING ME TODAY. 8035 04:26:02,520 --> 04:26:03,640 SO OVER THE LAST 30 YEARS, THE 8036 04:26:03,640 --> 04:26:07,600 FIELDS OF GERIATRIC MEDICINE AND 8037 04:26:07,600 --> 04:26:08,600 GERIATRIC PSYCHIATRY HAVE 8038 04:26:08,600 --> 04:26:09,880 ESTABLISHED THE SCIENCE AND 8039 04:26:09,880 --> 04:26:11,320 PRACTICE UNDERLYING THE CARE OF 8040 04:26:11,320 --> 04:26:13,080 OLDER INDIVIDUALS REQUIRES 8041 04:26:13,080 --> 04:26:13,840 SPECIALIZED RESEARCH AND 8042 04:26:13,840 --> 04:26:15,600 TRAINING THAT DIFFERS 8043 04:26:15,600 --> 04:26:16,680 SUBSTANTIALLY FROM THAT OF 8044 04:26:16,680 --> 04:26:19,200 YOUNGER POPULATIONS. 8045 04:26:19,200 --> 04:26:21,160 YET WHILE RESEARCH TRAINING AND 8046 04:26:21,160 --> 04:26:22,360 SERVICES FOR AUTISM HAVE 8047 04:26:22,360 --> 04:26:23,360 SUBSTANTIALLY INCREASED OVER THE 8048 04:26:23,360 --> 04:26:27,200 SAME PERIOD, THERE'S BEEN A NEAR 8049 04:26:27,200 --> 04:26:28,520 ABSENCE OF RESEARCH ON AUTISM IN 8050 04:26:28,520 --> 04:26:32,360 OLDER AGE. 8051 04:26:32,360 --> 04:26:33,440 ORIGINALLY DESCRIBED AS A 8052 04:26:33,440 --> 04:26:36,280 DISORDER OF INFANTS, SO CALLED 8053 04:26:36,280 --> 04:26:40,240 INFANTILE AUTISM BY LEO CONNOR, 8054 04:26:40,240 --> 04:26:41,440 OUR CONCEPTION OF AUTISM HAS 8055 04:26:41,440 --> 04:26:43,120 EXPANDED SINCE THOSE CHILDREN 8056 04:26:43,120 --> 04:26:43,960 FIRST DIAGNOSED IN THE 40s, 8057 04:26:43,960 --> 04:26:46,160 50s AND 60s HAVE AGED INTO 8058 04:26:46,160 --> 04:26:48,320 THEIR SIXTH, SEVENTH AND EIGHTH 8059 04:26:48,320 --> 04:26:49,960 DECADES OF LIFE. 8060 04:26:49,960 --> 04:26:51,720 A 2010 ARTICLE THAT I REFERENCE 8061 04:26:51,720 --> 04:26:55,760 HERE ON THIS SLIDE IN THE 8062 04:26:55,760 --> 04:26:57,960 ATLANTIC MAGAZINE TELLING THE 8063 04:26:57,960 --> 04:26:59,840 STORY OF DONALD T., THE FIRST 8064 04:26:59,840 --> 04:27:04,440 CHILD DESCRIBED IN CONNOR'S 8065 04:27:04,440 --> 04:27:06,200 SEMINAL PAPER THEN DIAGNOSED AT 8066 04:27:06,200 --> 04:27:07,000 THE AGE OF 77 AT THE TIME THIS 8067 04:27:07,000 --> 04:27:08,520 ARTICLE CAME OUT WAS REALLY THE 8068 04:27:08,520 --> 04:27:10,640 FIRST TO ELEVATE THIS TOPIC IN 8069 04:27:10,640 --> 04:27:11,920 THE MEDIA. 8070 04:27:11,920 --> 04:27:13,040 THE PREVALENCE OF AUTISM IN 8071 04:27:13,040 --> 04:27:14,760 SCHOOL AGED CHILDREN IS 8072 04:27:14,760 --> 04:27:19,280 CURRENTLY APPROXIMATELY 1 IN 50, 8073 04:27:19,280 --> 04:27:19,880 BUT THERE'S GOOD EVIDENCE OF 8074 04:27:19,880 --> 04:27:23,520 SIMILAR RATES IN ADULTS. 8075 04:27:23,520 --> 04:27:24,840 BUT IT'S BECOMING INCREASINGLY 8076 04:27:24,840 --> 04:27:28,160 CLEAR THAT THERE'S A KR DRAMATIC 8077 04:27:28,160 --> 04:27:29,440 RECOGNITION OF OLDER AUTISTIC 8078 04:27:29,440 --> 04:27:31,320 ADULTS WHO WERE NOT FIRST 8079 04:27:31,320 --> 04:27:32,040 IDENTIFIED AS CHILDREN AND ARE 8080 04:27:32,040 --> 04:27:33,840 FREQUENTLY MISDIAGNOSED WITH 8081 04:27:33,840 --> 04:27:36,160 OTHER PSYCHIATRIC CONDITIONS. 8082 04:27:36,160 --> 04:27:38,600 AND WITH THE WELL-KNOWN AGING OF 8083 04:27:38,600 --> 04:27:40,240 WESTERN SOCIETIES, THIS PROBLEM 8084 04:27:40,240 --> 04:27:42,720 OF A RELATIVELY ABSENT KNOWLEDGE 8085 04:27:42,720 --> 04:27:45,040 BASE WILL ONLY GET BIGGER AS 8086 04:27:45,040 --> 04:27:47,200 THOSE NOW IDENTIFIED AT YOUNGER 8087 04:27:47,200 --> 04:27:49,080 AGES MOVE INTO THIS PERIOD OF 8088 04:27:49,080 --> 04:27:56,640 THEIR LIVES. 8089 04:27:56,640 --> 04:27:58,600 I'M GOING TO BEGIN THIS BRIEF 8090 04:27:58,600 --> 04:28:00,240 PRESENTATION WITH AN EXAMPLE 8091 04:28:00,240 --> 04:28:02,960 FROM MY RESEARCH WHERE IN 2015, 8092 04:28:02,960 --> 04:28:04,400 WE UNEXPECTEDLY OBSERVED THAT 8093 04:28:04,400 --> 04:28:06,120 OLDER ADULTS WITH AUTISM WHO 8094 04:28:06,120 --> 04:28:07,200 WERE EXAMINED DIRECTLY WITH A 8095 04:28:07,200 --> 04:28:09,480 NEWNEUROLOGICAL EXAM HAD HIGH RS 8096 04:28:09,480 --> 04:28:13,000 OF PARKINSON'S DISEASE, AND TWO 8097 04:28:13,000 --> 04:28:14,280 INDEPENDENT SMALL, AND I WANT TO 8098 04:28:14,280 --> 04:28:16,240 UNDERSCORE THAT THEY WERE SMALL, 8099 04:28:16,240 --> 04:28:18,600 SAMPLES, ONE IN NORTH CAROLINA 8100 04:28:18,600 --> 04:28:21,400 AND ONE IN PERTH, AUSTRALIA. 8101 04:28:21,400 --> 04:28:23,840 20% OF OUR SAMPLE HAD 8102 04:28:23,840 --> 04:28:24,480 PARKINSON'S SYNDROME, A RATE 8103 04:28:24,480 --> 04:28:26,040 THAT IS 200 TIMES THAT IN THE 8104 04:28:26,040 --> 04:28:28,880 GENERAL POPULATION. 8105 04:28:28,880 --> 04:28:30,760 THIS FINDING WAS CONSISTENT WITH 8106 04:28:30,760 --> 04:28:33,280 WORK FROM LISA CROEN, WHO 8107 04:28:33,280 --> 04:28:34,560 SURVEYED A LARGE CLINICAL 8108 04:28:34,560 --> 04:28:36,160 DATABASE IN CALIFORNIA, AND MORE 8109 04:28:36,160 --> 04:28:38,080 RECENTLY HILDA GERTZ, WHO 8110 04:28:38,080 --> 04:28:39,760 COLLECTED QUESTIONNAIRE DATA ON 8111 04:28:39,760 --> 04:28:41,000 AUTISTIC ADULTS IN THE 8112 04:28:41,000 --> 04:28:42,000 NETHERLANDS. 8113 04:28:42,000 --> 04:28:43,400 THESE VERY DIFFERENT APPROACHES 8114 04:28:43,400 --> 04:28:44,920 ALL CONVERGED ON A SIMILAR 8115 04:28:44,920 --> 04:28:49,920 FINDING. 8116 04:28:49,920 --> 04:28:52,120 IF THIS FINDING IS REPLICATED, 8117 04:28:52,120 --> 04:28:53,160 ONE OBVIOUS QUESTION IS, WHY IS 8118 04:28:53,160 --> 04:28:56,080 THIS HAPPENING? 8119 04:28:56,080 --> 04:28:57,400 ONE EXAMPLE THAT HELPS US TO 8120 04:28:57,400 --> 04:28:59,800 THINK ABOUT THIS IS DOWN 8121 04:28:59,800 --> 04:29:00,720 SYNDROME, A GENETIC DISORDER OF 8122 04:29:00,720 --> 04:29:03,120 EARLY DEVELOP M. 8123 04:29:03,120 --> 04:29:03,320 MENT. 8124 04:29:03,320 --> 04:29:04,400 PEOPLE WITH DOWN SYNDROME NOT 8125 04:29:04,400 --> 04:29:05,720 ONLY HAVE A PROBLEM WITH EARLY 8126 04:29:05,720 --> 04:29:06,840 DEVELOPMENT, BUT THEY HAVE HIGH 8127 04:29:06,840 --> 04:29:09,480 RATES OF EARLY ONSET DEMENTIA 8128 04:29:09,480 --> 04:29:11,160 THAT IS DUE TO THE SAME 8129 04:29:11,160 --> 04:29:14,880 UNDERLYING BIOLOGY THAT CAUSES 8130 04:29:14,880 --> 04:29:16,600 DOWN SYNDROME, AND IT'S NOT AN 8131 04:29:16,600 --> 04:29:17,280 UNDERSTANDABLE CONSEQUENCE OF 8132 04:29:17,280 --> 04:29:18,600 HAVING A DISORDER OF DEVELOPMENT 8133 04:29:18,600 --> 04:29:22,040 OR COGNITION OR LIFESTYLE OR 8134 04:29:22,040 --> 04:29:23,520 ACCESS TO CARE. 8135 04:29:23,520 --> 04:29:25,920 RECENTLY A GROUP AT DREXEL, LED 8136 04:29:25,920 --> 04:29:31,440 BY JACAMO DIVANTE REPORTED HIGH 8137 04:29:31,440 --> 04:29:32,760 RATES OF DEMENTIA IN AUTISM, 8138 04:29:32,760 --> 04:29:35,640 USING A LARGE MEDICAID DATABASE 8139 04:29:35,640 --> 04:29:37,480 SUGGESTING THAT ELEVATED RISK 8140 04:29:37,480 --> 04:29:39,880 FOR DEMENTIA IS ALSO AN 8141 04:29:39,880 --> 04:29:43,760 IMPORTANT CONSIDERATION IN AGING 8142 04:29:43,760 --> 04:29:45,720 AUTISTIC ADULTS. 8143 04:29:45,720 --> 04:29:46,600 TAKING THIS A STEP FURTHER, 8144 04:29:46,600 --> 04:29:48,880 WHILE WE TEND TO THINK ABOUT THE 8145 04:29:48,880 --> 04:29:51,840 BIOLOGICAL ROOTS OF AUTISM AS 8146 04:29:51,840 --> 04:29:52,960 BEING IN EARLY CHILDHOOD, THERE 8147 04:29:52,960 --> 04:29:55,040 IS EMERGING DATA TO SUGGEST THAT 8148 04:29:55,040 --> 04:29:56,440 BRAIN CHANGES MAY NOT BE LIMITED 8149 04:29:56,440 --> 04:29:59,760 TO CHILDHOOD, BUT THAT SPECIFIC 8150 04:29:59,760 --> 04:30:01,480 BRAIN CHANGES, THAT IS SPECIFIC 8151 04:30:01,480 --> 04:30:02,840 TO AUTISM AND SPECIFIC TO 8152 04:30:02,840 --> 04:30:07,320 PARTICULAR AGES, OCCUR ACROSS 8153 04:30:07,320 --> 04:30:08,520 ADULTHOOD IN AUTISTIC 8154 04:30:08,520 --> 04:30:08,840 INDIVIDUALS. 8155 04:30:08,840 --> 04:30:11,360 THIS WORK BY BRANDON ZELENSKY 8156 04:30:11,360 --> 04:30:12,520 AND JANET LANEHART AT THE 8157 04:30:12,520 --> 04:30:13,560 UNIVERSITY OF WISCONSIN IS 8158 04:30:13,560 --> 04:30:15,240 CONSISTENT WITH FINDINGS BY 8159 04:30:15,240 --> 04:30:18,040 BLARE BRADEN AT THE UNIVERSITY 8160 04:30:18,040 --> 04:30:20,240 OF ARIZONA, SHOWING THAT 8161 04:30:20,240 --> 04:30:22,400 AUTISM-SPECIFIC CHANGES IN BRAIN 8162 04:30:22,400 --> 04:30:23,040 DEVELOPMENT MAY CONTINUE BEYOND 8163 04:30:23,040 --> 04:30:27,960 CHILDHOOD. 8164 04:30:27,960 --> 04:30:31,040 THE STUD LILI IS A CROEN THAT I 8165 04:30:31,040 --> 04:30:32,840 MENTIONED EARLIER THAT SUGGESTED 8166 04:30:32,840 --> 04:30:34,320 HIGH RATES OF PARKINSON'S IN 8167 04:30:34,320 --> 04:30:35,640 AUTISTIC ADULTS WENT A STEP 8168 04:30:35,640 --> 04:30:37,440 FURTHER IN THEIR REVIEW OF THE 8169 04:30:37,440 --> 04:30:38,000 MEDICAL RECORDS OF A LARGE 8170 04:30:38,000 --> 04:30:40,480 HEALTHCARE SYSTEM. 8171 04:30:40,480 --> 04:30:42,080 IN ADDITION TO HIGH RATES OF 8172 04:30:42,080 --> 04:30:42,760 PARKINSON'S DISEASE, THEY ALSO 8173 04:30:42,760 --> 04:30:44,760 FOUND THAT THERE WAS AN INCREASE 8174 04:30:44,760 --> 04:30:46,520 IN AUTISTIC ADULTS IN MANY 8175 04:30:46,520 --> 04:30:50,720 MEDICAL AND PSYCHIATRIC 8176 04:30:50,720 --> 04:30:51,240 CONDITIONS, INCLUDING 8177 04:30:51,240 --> 04:30:52,560 HYPERTENSION, OBESITY, DIABETES 8178 04:30:52,560 --> 04:30:53,600 AND SLEEP PROBLEMS. 8179 04:30:53,600 --> 04:30:55,640 A FINDING THAT HAS NOW BEEN 8180 04:30:55,640 --> 04:30:56,520 REPLICATED AND EXTENDED BY 8181 04:30:56,520 --> 04:31:01,240 OTHERS. 8182 04:31:01,240 --> 04:31:02,240 SO THE QUESTION BECOMES WHY IS 8183 04:31:02,240 --> 04:31:05,840 THIS HAPPENING? 8184 04:31:05,840 --> 04:31:07,480 IT'S TEMPTING TO ASCRIBE THIS TO 8185 04:31:07,480 --> 04:31:10,480 A COMMON UNDERSTANDABLE CAUSE. 8186 04:31:10,480 --> 04:31:13,640 AUTISTIC PEOPLE OFTEN DON'T GET 8187 04:31:13,640 --> 04:31:14,640 ADEQUATE CLINICAL SERVICES, THEY 8188 04:31:14,640 --> 04:31:16,200 OFTEN HAVE COMMUNICATION 8189 04:31:16,200 --> 04:31:17,720 DEFICITS THAT UNDOUBTEDLY LEAD 8190 04:31:17,720 --> 04:31:20,240 TO UNDERREPORTING OF SYMPTOMS, 8191 04:31:20,240 --> 04:31:22,120 AND LESS THAN ADEQUATE 8192 04:31:22,120 --> 04:31:24,320 PREVENTIVE CARE, OR MAYBE THIS 8193 04:31:24,320 --> 04:31:26,280 IS ATTRIBUTABLE TO LIFESTYLE 8194 04:31:26,280 --> 04:31:27,640 FACTORS LIKE DIET AND EXERCISE. 8195 04:31:27,640 --> 04:31:29,200 ALL OF THESE ARE IMPORTANT 8196 04:31:29,200 --> 04:31:32,120 TARGETS FOR INTERVENTION AND 8197 04:31:32,120 --> 04:31:33,200 POLICY THAT REMAIN TO BE 8198 04:31:33,200 --> 04:31:36,200 DEVELOPED FOR THIS POPULATION. 8199 04:31:36,200 --> 04:31:36,960 BUT THE CORRECT ANSWER IS THAT 8200 04:31:36,960 --> 04:31:39,160 WE DON'T KNOW IF THOSE ARE THE 8201 04:31:39,160 --> 04:31:39,600 EXPLANATIONS. 8202 04:31:39,600 --> 04:31:41,000 HIGH RATES OF PARKINSON'S MAY BE 8203 04:31:41,000 --> 04:31:42,880 DUE TO UNDERLYING BIOLOGY, JUST 8204 04:31:42,880 --> 04:31:45,680 AS WE SEE IN DOWN SYNDROME. 8205 04:31:45,680 --> 04:31:47,600 OTHER OUTCOMES MAY BE A 8206 04:31:47,600 --> 04:31:49,480 COMBINATION OF FACTORS. 8207 04:31:49,480 --> 04:31:50,360 COMPLICATING THIS FURTHER IS THE 8208 04:31:50,360 --> 04:31:53,760 FACT THAT WHILE WE CALL AUTISM 8209 04:31:53,760 --> 04:31:55,400 ONE THING, AUTISM SPECTRUM 8210 04:31:55,400 --> 04:31:57,160 DISORDER, WE KNOW THAT IT IS NOT 8211 04:31:57,160 --> 04:31:59,560 ONE THING, AND THAT THE CAUSES 8212 04:31:59,560 --> 04:32:00,960 ARE HETEROGENEOUS. 8213 04:32:00,960 --> 04:32:02,160 IT ALSO POSSIBLE THAT HIGH RATES 8214 04:32:02,160 --> 04:32:04,440 OF PARKINSON'S MAY BE DUE TO 8215 04:32:04,440 --> 04:32:05,440 MECHANISMS THAT ARE DIFFERENT 8216 04:32:05,440 --> 04:32:07,040 FROM PARKINSON'S IN THE 8217 04:32:07,040 --> 04:32:10,200 NON-AUTISTIC POPULATION. 8218 04:32:10,200 --> 04:32:11,840 WE JUST FRANKLY DO NOT KNOW. 8219 04:32:11,840 --> 04:32:12,920 WE NEED TO UNDERSTAND ALL OF 8220 04:32:12,920 --> 04:32:14,840 THESE THINGS IN ORDER TO DEVELOP 8221 04:32:14,840 --> 04:32:16,480 APPROPRIATE, PREVENTIVE AND 8222 04:32:16,480 --> 04:32:18,080 CONCURRENT INTERVENTIONS, AND 8223 04:32:18,080 --> 04:32:21,080 THEN TO TRAIN THE WORKFORCE TO 8224 04:32:21,080 --> 04:32:26,520 PROVIDE SPECIALIZED CARE. 8225 04:32:26,520 --> 04:32:28,760 SO GOING BEYOND THOUGHTS ABOUT 8226 04:32:28,760 --> 04:32:31,880 CAUSATION, WE NEED TO APPRECIATE 8227 04:32:31,880 --> 04:32:34,560 THE EXPERIENCE OF HAVING MEDICAL 8228 04:32:34,560 --> 04:32:36,440 AND PSYCHIATRIC PROBLEMS COMMON 8229 04:32:36,440 --> 04:32:40,360 IN THE AGING POPULATION IN 8230 04:32:40,360 --> 04:32:41,880 SOMEONE WITH AUTISM, AS IT IS 8231 04:32:41,880 --> 04:32:44,320 VERY LIKELY TO BE DIFFERENT THAN 8232 04:32:44,320 --> 04:32:44,840 SOMEONE WITHOUT AUTISM. 8233 04:32:44,840 --> 04:32:48,120 AND I THINK THE PANEL MADE THAT 8234 04:32:48,120 --> 04:32:50,480 POINT VERY CLEARLY. 8235 04:32:50,480 --> 04:32:52,080 WHAT ARE THE UNIQUE INTERACTIONS 8236 04:32:52,080 --> 04:32:53,280 BETWEEN THE CHARACTERISTICS OF 8237 04:32:53,280 --> 04:32:55,640 AUTISM AND THE PROBLEMS OF 8238 04:32:55,640 --> 04:32:55,960 AGING? 8239 04:32:55,960 --> 04:32:58,360 SO I WAS FORTUNATE ENOUGH TO 8240 04:32:58,360 --> 04:33:00,480 HAVE THESE VIGNETTES PUT 8241 04:33:00,480 --> 04:33:04,200 TOGETHER BY A COLLEAGUE OF MINE 8242 04:33:04,200 --> 04:33:06,960 WHO TAKES CARE OF OLDER ADULTS 8243 04:33:06,960 --> 04:33:10,360 WITH AUTISM IN PERTH, AUSTRALIA 8244 04:33:10,360 --> 04:33:11,120 AND I WANTED TO TAKE A MINUTE TO 8245 04:33:11,120 --> 04:33:12,320 READ THEM. 8246 04:33:12,320 --> 04:33:15,200 AN AUTISTIC MAN HAD AN ACTIVE 8247 04:33:15,200 --> 04:33:16,760 AND INDEPENDENT LIFE, ALTHOUGH 8248 04:33:16,760 --> 04:33:18,600 HE WAS NOTED TO GET UPSET WITH 8249 04:33:18,600 --> 04:33:21,080 ANY CHANGES IN HIS ROUTINE OR 8250 04:33:21,080 --> 04:33:21,760 ENVIRONMENT. 8251 04:33:21,760 --> 04:33:23,720 HIS ROUTINE INCLUDED MORNING 8252 04:33:23,720 --> 04:33:25,200 COFFEE AT A LOCAL RESTAURANT. 8253 04:33:25,200 --> 04:33:26,960 HOWEVER, WITH THE ONSET OF 8254 04:33:26,960 --> 04:33:28,360 PARKINSON'S DISEASE, SEVERE 8255 04:33:28,360 --> 04:33:29,840 TREMOR RESULTED IN HIS BEING 8256 04:33:29,840 --> 04:33:31,280 UNABLE TO DRINK HIS COFFEE 8257 04:33:31,280 --> 04:33:35,200 WITHOUT SPILLING IT, LEADING TO 8258 04:33:35,200 --> 04:33:35,680 BEHAVIOR OUTBURSTS AND 8259 04:33:35,680 --> 04:33:36,760 ULTIMATELY RESULTING IN A 8260 04:33:36,760 --> 04:33:37,760 SUBSTANTIAL DISRUPTION OF HIS 8261 04:33:37,760 --> 04:33:39,720 SCHEDULE AND NOTABLY DIMINISHED 8262 04:33:39,720 --> 04:33:43,880 LEVEL OF FUNCTION. 8263 04:33:43,880 --> 04:33:45,080 ANOTHER AUTISTIC MAN WITH HIGH 8264 04:33:45,080 --> 04:33:46,520 SUPPORT NEEDS LIVING IN A GROUP 8265 04:33:46,520 --> 04:33:47,600 HOME HAD ALWAYS BEEN ABLE TO 8266 04:33:47,600 --> 04:33:49,160 FEED AND DRESS HIMSELF. 8267 04:33:49,160 --> 04:33:51,240 WITH THE ONSET OF A SEVERE 8268 04:33:51,240 --> 04:33:52,440 TREMOR, HE BECAME FULLY 8269 04:33:52,440 --> 04:33:54,160 DEPENDENT ON CARE BY OTHERS, 8270 04:33:54,160 --> 04:33:56,520 LEADING TO CHRONIC IRRITABILITY, 8271 04:33:56,520 --> 04:33:57,320 FRUSTRATION, AND BEHAVIORAL 8272 04:33:57,320 --> 04:33:59,280 UPSETS THAT REQUIRED FREQUENT 8273 04:33:59,280 --> 04:34:00,000 INTERACTIONS BY HIS PHYSICIAN 8274 04:34:00,000 --> 04:34:02,280 AND GROUP HOME STAFF. 8275 04:34:02,280 --> 04:34:07,640 AND FINALLY, AN AUTISTIC WOMAN 8276 04:34:07,640 --> 04:34:08,760 DEVELOPED ACHY NE TICK-RIGID 8277 04:34:08,760 --> 04:34:10,360 PARKINSON'S DISEASE WITH POOR 8278 04:34:10,360 --> 04:34:11,800 BALANCE, FREQUENT FALLS AND 8279 04:34:11,800 --> 04:34:13,040 SHUFFLING GAIT. 8280 04:34:13,040 --> 04:34:14,360 AS A RESULT OF AN EXAGGERATED 8281 04:34:14,360 --> 04:34:16,200 FEAR OF FALLING, SHE BECAME 8282 04:34:16,200 --> 04:34:18,400 RECLUSIVE AND DEVELOPED 8283 04:34:18,400 --> 04:34:19,400 AGORAPHOBIA, FEAR OF OPEN 8284 04:34:19,400 --> 04:34:20,640 SPACES, AND PANIC ATTACKS, AND 8285 04:34:20,640 --> 04:34:22,800 HER LEVEL OF FUNCTION DIMINISHED 8286 04:34:22,800 --> 04:34:23,680 CONSIDERABLY. 8287 04:34:23,680 --> 04:34:25,800 SHE WAS MISDIAGNOSED BY A LOCAL 8288 04:34:25,800 --> 04:34:28,400 PHYSICIAN AS HAVING A LATE-ONSET 8289 04:34:28,400 --> 04:34:29,280 PSYCHOSIS. 8290 04:34:29,280 --> 04:34:31,200 LATER, TREATED WITH AN 8291 04:34:31,200 --> 04:34:34,480 ANXIOLYTIC MEDICATION, AN 8292 04:34:34,480 --> 04:34:35,440 ANTI-ANXIETY MEDICATION, SHE 8293 04:34:35,440 --> 04:34:37,280 RETURNED TO HER BASELINE LEVEL 8294 04:34:37,280 --> 04:34:41,080 OF FUNCTION. 8295 04:34:41,080 --> 04:34:45,000 SO IN 2010, I ORGANIZED A SMALL 8296 04:34:45,000 --> 04:34:46,760 TWO-DAY CONFERENCE AIMED AT 8297 04:34:46,760 --> 04:34:47,600 BEGINNING TO DEVELOP AN AGENDA 8298 04:34:47,600 --> 04:34:50,640 FOR RESEARCH ON OLDER ADULTS 8299 04:34:50,640 --> 04:34:52,480 WITH AUTISM. 8300 04:34:52,480 --> 04:34:55,160 THIS CONFERENCE INCLUDED TWO 8301 04:34:55,160 --> 04:34:56,240 SEPARATE GROUPS, A GROUP OF 8302 04:34:56,240 --> 04:34:59,520 AUTISM EXPERTS AND A GROUP OF 8303 04:34:59,520 --> 04:35:00,640 EXPERTS IN GERIATRICS. 8304 04:35:00,640 --> 04:35:02,520 AS THERE ARE BY AND LARGE NO 8305 04:35:02,520 --> 04:35:03,800 CLINICIANS OR RESEARCHERS WHO 8306 04:35:03,800 --> 04:35:06,160 ARE EXPERT IN BOTH. 8307 04:35:06,160 --> 04:35:08,320 TO UNDERSCORE THIS POINT, THERE 8308 04:35:08,320 --> 04:35:12,080 ARE GERIATRIC MEDICINE AND 8309 04:35:12,080 --> 04:35:14,800 GERIATRIC PSYCHIATRY PROGRAMS IN 8310 04:35:14,800 --> 04:35:16,160 EVERY UNIVERSITY IN THE COUNTRY 8311 04:35:16,160 --> 04:35:18,680 BUT IT WOULD BE EXTREMELY 8312 04:35:18,680 --> 04:35:23,400 UNLIKELY TO FIND EXPERTS 8313 04:35:23,400 --> 04:35:24,600 SPECIALIZING IN AUTISM IN ANY OF 8314 04:35:24,600 --> 04:35:25,800 THESE PROGRAMS. 8315 04:35:25,800 --> 04:35:27,800 A REVERSE OF THIS ISSUE IS MOST 8316 04:35:27,800 --> 04:35:28,320 CLINICIANS AND RESEARCHES 8317 04:35:28,320 --> 04:35:29,840 WORKING ON AUTISM TYPICALLY 8318 04:35:29,840 --> 04:35:30,560 STARTED WITH A FOCUS ON 8319 04:35:30,560 --> 04:35:32,680 CHILDREN, AND HAVE NO EXPERTISE 8320 04:35:32,680 --> 04:35:34,880 IN CARING FOR OR CONDUCTING 8321 04:35:34,880 --> 04:35:37,160 RESEARCH ON OLDER ADULTS. 8322 04:35:37,160 --> 04:35:39,480 WE ALSO BROUGHT TOGETHER EXPERTS 8323 04:35:39,480 --> 04:35:40,920 ACROSS MULTIPLE DISCIPLINES FROM 8324 04:35:40,920 --> 04:35:43,320 THE BIOLOGY OF AGING TO 8325 04:35:43,320 --> 04:35:45,520 LONG-TERM CARE, BASIC SCIENTISTS 8326 04:35:45,520 --> 04:35:47,080 TO POLICY MAKERS. 8327 04:35:47,080 --> 04:35:48,600 WHEN YOU BEGIN TO THINK ABOUT 8328 04:35:48,600 --> 04:35:52,560 THE SCOPE OF THE PROBLEM, YOU 8329 04:35:52,560 --> 04:35:53,800 QUICKLY REALIZE THIS BREADTH OF 8330 04:35:53,800 --> 04:35:59,240 EXPERTISE IS REQUIRED. 8331 04:35:59,240 --> 04:36:00,720 THERE'S NOT ENOUGH TIME TO GO 8332 04:36:00,720 --> 04:36:01,320 INTO THE RECOMMENDATIONS THAT 8333 04:36:01,320 --> 04:36:03,120 CAME OUT OF THIS MEETING, BUTLY 8334 04:36:03,120 --> 04:36:06,080 END BY NOTING THAT THE GROUP 8335 04:36:06,080 --> 04:36:07,240 RECOMMENDED THE NEED FOR THE 8336 04:36:07,240 --> 04:36:08,760 DEVELOPMENT OF SCREENING, 8337 04:36:08,760 --> 04:36:11,160 DIAGNOSIS AND ASSESSMENT TOOLS 8338 04:36:11,160 --> 04:36:13,760 AS THE VAST MAJORITY OF OUR 8339 04:36:13,760 --> 04:36:14,800 INSTRUMENTS ARE FOR CHILDREN AND 8340 04:36:14,800 --> 04:36:16,440 IN PARTICULAR NOT DEVELOPED TO 8341 04:36:16,440 --> 04:36:18,400 IDENTIFY DECLINING COGNITIVE 8342 04:36:18,400 --> 04:36:21,960 ABILITIES IN OLDER AGE OR SCREEN 8343 04:36:21,960 --> 04:36:22,840 AND DIAGNOSE AUTISM IN 8344 04:36:22,840 --> 04:36:25,480 60-YEAR-OLDS. 8345 04:36:25,480 --> 04:36:27,000 THERE'S A CLEAR NEED FOR A LARGE 8346 04:36:27,000 --> 04:36:28,800 SCALE LONGITUDINAL STUDY ON THE 8347 04:36:28,800 --> 04:36:31,400 ORDER OF THE CURRENT ADOLESCENT 8348 04:36:31,400 --> 04:36:33,200 BRAIN COGNITIVE DEVELOPMENT OR 8349 04:36:33,200 --> 04:36:35,400 ABCD STUDY, A LONGITUDINAL STUDY 8350 04:36:35,400 --> 04:36:36,920 OF DEVELOPMENT ACROSS 8351 04:36:36,920 --> 04:36:37,240 ADOLESCENCE. 8352 04:36:37,240 --> 04:36:39,240 AS YOU WILL SEE IN MARSHA'S 8353 04:36:39,240 --> 04:36:41,040 PRESENTATION, DEVELOPMENT IN 8354 04:36:41,040 --> 04:36:45,080 OLDER AGE AND AUTISM IS 8355 04:36:45,080 --> 04:36:46,040 NON-LINEAR, AND THEREFORE 8356 04:36:46,040 --> 04:36:47,560 REQUIRES STUDY USING 8357 04:36:47,560 --> 04:36:48,040 LONGITUDINAL METHODS. 8358 04:36:48,040 --> 04:36:49,720 BUT WE ALSO CANNOT WAIT FOR 20 8359 04:36:49,720 --> 04:36:50,920 YEARS FOR THOSE RESULTS. 8360 04:36:50,920 --> 04:36:52,880 WE NEED CROSS-SECTIONAL STUDIES 8361 04:36:52,880 --> 04:36:55,880 OF OLDER ADULTS TO CHARACTERIZE 8362 04:36:55,880 --> 04:36:56,880 THEIR PROBLEMS AND IDENTIFY 8363 04:36:56,880 --> 04:37:00,160 SOLUTIONS SOONER. 8364 04:37:00,160 --> 04:37:01,680 WE CANNOT MAKE ASSUMPTIONS ABOUT 8365 04:37:01,680 --> 04:37:02,560 CAUSES. 8366 04:37:02,560 --> 04:37:03,720 THERE IS A NEED TO EXPLORE THE 8367 04:37:03,720 --> 04:37:06,600 BIOLOGY OF AGING, AS WELL AS THE 8368 04:37:06,600 --> 04:37:08,680 IMPACT OF FACTORS SUCH AS 8369 04:37:08,680 --> 04:37:09,240 ENVIRONMENT, EXPERIENCE AND 8370 04:37:09,240 --> 04:37:10,680 LIFESTYLE. 8371 04:37:10,680 --> 04:37:12,840 WE NEED TO FIRST UNDERSTAND AND 8372 04:37:12,840 --> 04:37:15,280 THEN DEVELOP SERVICES, 8373 04:37:15,280 --> 04:37:15,800 INTERVENTIONS, PREDICTIVE 8374 04:37:15,800 --> 04:37:17,480 MEASURES AND PREVENTIVE 8375 04:37:17,480 --> 04:37:19,880 INTERVENTIONS AND STRATEGIES FOR 8376 04:37:19,880 --> 04:37:21,880 LONG-TERM CARE THAT DO NOT 8377 04:37:21,880 --> 04:37:23,000 CURRENTLY EXIST. 8378 04:37:23,000 --> 04:37:24,520 AND FINALLY, WE NEED TO TRAIN 8379 04:37:24,520 --> 04:37:27,160 THE WORKFORCE AND BUILD CAPACITY 8380 04:37:27,160 --> 04:37:29,160 IN TRAINING RESEARCH AND 8381 04:37:29,160 --> 04:37:34,840 CLINICAL CARE. 8382 04:37:34,840 --> 04:37:36,160 SO LET ME END AND PASS THIS 8383 04:37:36,160 --> 04:37:37,880 MICROPHONE TO MY COLLEAGUE, 8384 04:37:37,880 --> 04:37:39,200 MARSHA MAILICK, WHO WILL TELL 8385 04:37:39,200 --> 04:37:40,680 YOU ABOUT HER WORK ON A UNIQUE 8386 04:37:40,680 --> 04:37:42,440 LONGITUDINAL STUDY OF ADULTS 8387 04:37:42,440 --> 04:37:44,520 WITH AUTISM AND THEIR FAMILIES. 8388 04:37:44,520 --> 04:37:46,280 I THINK IT'S FAIR TO SAY THAT 8389 04:37:46,280 --> 04:37:47,880 OUR WORK, AND THAT OF A FEW 8390 04:37:47,880 --> 04:37:48,960 OTHERS, IS JUST BEGINNING TO 8391 04:37:48,960 --> 04:37:52,960 SCRATCH THE SURFACE TO POINT OUT 8392 04:37:52,960 --> 04:37:53,920 WHERE OUR KNOWLEDGE IS DEFICIENT 8393 04:37:53,920 --> 04:37:55,520 AND UNDERSCORE THE URGENT NEED 8394 04:37:55,520 --> 04:37:58,360 FOR MULTILEVEL RESEARCH AND 8395 04:37:58,360 --> 04:37:59,560 TRAINING TO ESTABLISH WHAT IS 8396 04:37:59,560 --> 04:38:02,560 CURRENTLY THE RELATIVELY 8397 04:38:02,560 --> 04:38:03,480 NON-EXISTENT CLINICAL AND 8398 04:38:03,480 --> 04:38:05,560 RESEARCH DISCIPLINES FOCUSING ON 8399 04:38:05,560 --> 04:38:06,920 AUTISM IN OLDER AGE. 8400 04:38:06,920 --> 04:38:11,800 THANK YOU. 8401 04:38:11,800 --> 04:38:13,360 >>GOOD AFTERNOON. 8402 04:38:13,360 --> 04:38:17,680 CAN YOU SEE ME, CAN YOU HEAR ME? 8403 04:38:17,680 --> 04:38:18,120 TERRIFIC. 8404 04:38:18,120 --> 04:38:21,280 SO THANK YOU ALL FOR THIS FOCUS 8405 04:38:21,280 --> 04:38:22,080 ON AGING AND AUTISM. 8406 04:38:22,080 --> 04:38:24,280 THANK YOU, JOE, FOR INCLUDING ME 8407 04:38:24,280 --> 04:38:25,600 AND FOR SUSAN DANIELS AS WELL 8408 04:38:25,600 --> 04:38:26,360 FOR INCLUDING ME. 8409 04:38:26,360 --> 04:38:28,520 IT'S BEEN AN INTEREST OF MINE 8410 04:38:28,520 --> 04:38:31,000 THAT BEGAN MANY YEARS AGO AND 8411 04:38:31,000 --> 04:38:33,840 I'D LIKE TO TELL YOU A LITTLE 8412 04:38:33,840 --> 04:38:38,560 ABOUT OUR RESEARCH ON 8413 04:38:38,560 --> 04:38:40,600 ADOLESCENTS AND -- A STUDY WE 8414 04:38:40,600 --> 04:38:42,000 BEGAN 22 YEARS AGO, STILL 8415 04:38:42,000 --> 04:38:42,320 ONGOING. 8416 04:38:42,320 --> 04:38:43,960 I'D LIKE TO POINT OUT OUR MAJOR 8417 04:38:43,960 --> 04:38:45,600 FUNDING HAS COME FROM THE 8418 04:38:45,600 --> 04:38:46,520 NATIONAL INSTITUTE OP AGING, 8419 04:38:46,520 --> 04:38:47,840 WHICH IS AN UNUSUAL SOURCE OF 8420 04:38:47,840 --> 04:38:50,360 FUNDING FOR PEOPLE -- WITH A 8421 04:38:50,360 --> 04:38:52,240 FOCUS ON PEOPLE WITH AUTISM. 8422 04:38:52,240 --> 04:38:55,000 SO YOU SEE DURING THE 22 YEARS, 8423 04:38:55,000 --> 04:38:58,600 WE HAVE CONDUCTED NINE ROUNDS OF 8424 04:38:58,600 --> 04:39:00,400 DATA COLLECTION ON A 8425 04:39:00,400 --> 04:39:02,240 HETEROGENEOUS COHORT WHO WERE AS 8426 04:39:02,240 --> 04:39:04,120 YOUNG AS 10 WHEN THE STUDY BEGAN 8427 04:39:04,120 --> 04:39:08,760 AND AS OLD AS 52 WHEN THE STUDY 8428 04:39:08,760 --> 04:39:11,240 BEGAN. 8429 04:39:11,240 --> 04:39:12,080 THIS LONGITUDINAL RESEARCH 8430 04:39:12,080 --> 04:39:13,680 DESIGN MAKES IT POSSIBLE TO LOOK 8431 04:39:13,680 --> 04:39:16,120 FORWARD ACROSS THE 22 YEARS TO 8432 04:39:16,120 --> 04:39:17,320 TRACK CHANGE PROSPECTIVELY IN 8433 04:39:17,320 --> 04:39:19,280 THIS COHORT, AND ALSO TO LOOK 8434 04:39:19,280 --> 04:39:22,600 BACKWARDS TO IDENTIFY PREDICTORS 8435 04:39:22,600 --> 04:39:23,440 OF CHANGE. 8436 04:39:23,440 --> 04:39:25,440 I'M GOING TO TELL YOU ABOUT 8437 04:39:25,440 --> 04:39:27,000 PREDICTORS IN MORTALITY IN THIS 8438 04:39:27,000 --> 04:39:27,240 COHORT. 8439 04:39:27,240 --> 04:39:28,600 HERE YOU CAN SEE SOME 8440 04:39:28,600 --> 04:39:29,960 CHARACTERISTICS OF OUR COHORT 8441 04:39:29,960 --> 04:39:32,600 WHEN THE STUDY BEGAN 22 YEARS 8442 04:39:32,600 --> 04:39:34,120 AGO, THREE QUARTERS WERE MALE, 8443 04:39:34,120 --> 04:39:35,040 TWO THIRDS WERE LIVING WITH 8444 04:39:35,040 --> 04:39:36,600 THEIR PARENTS, ABOUT THREE 8445 04:39:36,600 --> 04:39:38,520 QUARTERS WERE VERBAL. 8446 04:39:38,520 --> 04:39:40,320 95% WERE DIAGNOSED WITH AUTISTIC 8447 04:39:40,320 --> 04:39:43,160 DISORDER, WHICH WAS THE 8448 04:39:43,160 --> 04:39:44,280 TERMINOLOGY AND DIAGNOSTIC 8449 04:39:44,280 --> 04:39:45,320 PRACTICE OF THE TIME, BUT ALL 8450 04:39:45,320 --> 04:39:46,520 WOULD BE CONSIDERED TO HAVE 8451 04:39:46,520 --> 04:39:48,480 AUTISM TODAY. 8452 04:39:48,480 --> 04:39:50,120 70% HAD INTELLECTUAL DISABILITY 8453 04:39:50,120 --> 04:39:53,480 BUT I NOTE THAT THE HIGHEST IQ 8454 04:39:53,480 --> 04:39:55,760 IN OUR COHORT WAS 142, SO IT WAS 8455 04:39:55,760 --> 04:39:58,240 QUITE DIVERSE IN TERMS OF 8456 04:39:58,240 --> 04:39:59,040 COGNITIVE ABILITY. 8457 04:39:59,040 --> 04:40:01,000 HALF HAD CO-OCCURRING MENTAL 8458 04:40:01,000 --> 04:40:04,560 HEALTH DIAGNOSES, AND YOU CAN 8459 04:40:04,560 --> 04:40:07,080 SEE THAT ABOUT A THIRD HAD 8460 04:40:07,080 --> 04:40:09,520 EXCELLENT HEALTH, HALF HAD GOOD 8461 04:40:09,520 --> 04:40:10,200 HEALTH AND REMAINING WERE EITHER 8462 04:40:10,200 --> 04:40:13,600 FAIR OR POOR HEALTH. 8463 04:40:13,600 --> 04:40:15,840 SO WE LOOKED FORWARD OVER TWO 8464 04:40:15,840 --> 04:40:17,240 DECADES AT VARIOUS INDICATORS OF 8465 04:40:17,240 --> 04:40:19,640 AGING TO UNDERSTAND HOW AUTISTIC 8466 04:40:19,640 --> 04:40:21,040 ADULTS MIGHT CHANGE FROM 8467 04:40:21,040 --> 04:40:23,400 ADOLESCENTS TO MID LIFE AND THEN 8468 04:40:23,400 --> 04:40:25,160 FROM MID LIFE INTO OLDER AGE AND 8469 04:40:25,160 --> 04:40:27,120 BECAUSE WE HAD SUCH A WIDE AGE 8470 04:40:27,120 --> 04:40:29,160 RANGE AT THE BEGINNING OF OUR 8471 04:40:29,160 --> 04:40:31,120 STUDY, WE WERE ABLE TO ASK THESE 8472 04:40:31,120 --> 04:40:31,400 QUESTIONS. 8473 04:40:31,400 --> 04:40:32,400 IN THE INTEREST OF TIME, I'M 8474 04:40:32,400 --> 04:40:34,400 GOING TO TALK ABOUT ONE 8475 04:40:34,400 --> 04:40:35,400 INDICATOR OF ADULT DEVELOPMENT 8476 04:40:35,400 --> 04:40:36,760 IN AGING AND THAT IS ACTIVITIES 8477 04:40:36,760 --> 04:40:40,280 OF DAILY LIVING, ADLs. 8478 04:40:40,280 --> 04:40:41,160 ADLs ARE IMPORTANT BECAUSE 8479 04:40:41,160 --> 04:40:44,320 THEY'RE AN INDICATOR OF 8480 04:40:44,320 --> 04:40:45,240 FUNCTIONALITY IN ADULTHOOD. 8481 04:40:45,240 --> 04:40:46,720 THEY INCLUDE THE ABILITY TO TAKE 8482 04:40:46,720 --> 04:40:48,800 CARE OF ONE'S SELF TO PREPARE 8483 04:40:48,800 --> 04:40:50,960 MEALS TO KEEP YOUR HOUSE CLEAN 8484 04:40:50,960 --> 04:40:53,760 AND IN ORDER, MONEY MANAGEMENT 8485 04:40:53,760 --> 04:40:56,960 AND ADLs ARE COMMONLY MEASURED 8486 04:40:56,960 --> 04:40:58,240 IN ADULTS AND OLDER PEOPLE IN 8487 04:40:58,240 --> 04:41:00,200 THE GENERAL POPULATION AS A SIGN 8488 04:41:00,200 --> 04:41:02,920 OF AGING AND VULNERABILITY. 8489 04:41:02,920 --> 04:41:05,400 SO I'M GOING TO SHOW YOU 8490 04:41:05,400 --> 04:41:07,280 DIFFERENCES BETWEEN PEOPLE WHO 8491 04:41:07,280 --> 04:41:09,280 HAVE AUTISM WITH AND WITHOUT ID 8492 04:41:09,280 --> 04:41:09,840 AND THEN I'M GOING TO ASK 8493 04:41:09,840 --> 04:41:11,800 WHETHER THE SAME TREND IS 8494 04:41:11,800 --> 04:41:13,800 EVIDENT FOR PEOPLE WITH DOWN 8495 04:41:13,800 --> 04:41:19,400 SYNDROME WHO -- SO HERE YOU SEE 8496 04:41:19,400 --> 04:41:20,600 ACTIVITIES OF DAILY LIVING 8497 04:41:20,600 --> 04:41:24,440 MEASURED IN INDIVIDUALS WITH 8498 04:41:24,440 --> 04:41:26,320 AUTISM, THE BLUE LINE ARE 8499 04:41:26,320 --> 04:41:27,360 INDIVIDUALS WHO DO NOT HAVE 8500 04:41:27,360 --> 04:41:28,760 INTELLECTUAL DISABILITY, RED 8501 04:41:28,760 --> 04:41:31,600 LINE ARE INDIVIDUALS WITH 8502 04:41:31,600 --> 04:41:32,280 INTELLECTUAL DISABILITY AS WELL 8503 04:41:32,280 --> 04:41:33,320 AS AUTISM. 8504 04:41:33,320 --> 04:41:34,000 THEIR AGES ARE ALONG THE 8505 04:41:34,000 --> 04:41:34,440 HORIZONTAL ACCESS. 8506 04:41:34,440 --> 04:41:38,240 YOU CAN SEE PEOPLE AS YOUNG AS 8507 04:41:38,240 --> 04:41:40,880 10 YEARS OLD AND IN THEIR 60s 8508 04:41:40,880 --> 04:41:41,600 AS I MENTIONED EARLIER. 8509 04:41:41,600 --> 04:41:43,280 WHAT WE SEE WHICH IS REALLY 8510 04:41:43,280 --> 04:41:44,520 SURPRISING OR MAYBE NOT SO 8511 04:41:44,520 --> 04:41:45,880 SURPRISING IS THAT PEOPLE GAIN 8512 04:41:45,880 --> 04:41:47,840 ACTIVITIES OF DAILY LIVING 8513 04:41:47,840 --> 04:41:49,400 INDEPENDENCE AS THEY MOVE 8514 04:41:49,400 --> 04:41:51,320 THROUGH ADOLESCENCE INTO THE 8515 04:41:51,320 --> 04:41:54,160 EARLIER YEARS OF ADULTHOOD, BUT 8516 04:41:54,160 --> 04:41:56,520 AROUND AGE 35, THINGS CHANGE, 8517 04:41:56,520 --> 04:42:00,600 AND THERE'S A GRADUAL LOSS OF 8518 04:42:00,600 --> 04:42:02,000 INDEPENDENCE AND INDIVIDUALS, 8519 04:42:02,000 --> 04:42:03,400 BOTH WITHOUT INTELLECTUAL 8520 04:42:03,400 --> 04:42:04,800 DISABILITY WHO HAVE AUTISM AND 8521 04:42:04,800 --> 04:42:07,960 THOSE WHO ALSO HAVE INTELLECTUAL 8522 04:42:07,960 --> 04:42:08,240 DISABILITY. 8523 04:42:08,240 --> 04:42:11,520 THE NON-LINEAR OR -- NON-LINEAR 8524 04:42:11,520 --> 04:42:14,800 TREND IS EVEN MORE PRONOUNCED IN 8525 04:42:14,800 --> 04:42:16,880 TERMS OF THE GAINS OF ADL 8526 04:42:16,880 --> 04:42:18,680 INDEPENDENCE AND THE LOSS AMONG 8527 04:42:18,680 --> 04:42:20,320 THOSE WHO DO NOT HAVE 8528 04:42:20,320 --> 04:42:22,840 INTELLECTUAL DISABILITY. 8529 04:42:22,840 --> 04:42:24,920 NOW THE NEXT SLIDE SHOWS THE 8530 04:42:24,920 --> 04:42:26,920 SAME FUNCTION, THE NEXT SLIDE, 8531 04:42:26,920 --> 04:42:27,960 FOR INDIVIDUALS WITH DOWN 8532 04:42:27,960 --> 04:42:28,800 SYNDROME. 8533 04:42:28,800 --> 04:42:31,760 MEASURED ON THE SAME SCALE OF 8534 04:42:31,760 --> 04:42:33,560 ACTIVITY OF DAILY LIVING ALONG 8535 04:42:33,560 --> 04:42:34,800 THE SAME AGE RANGE. 8536 04:42:34,800 --> 04:42:36,400 AND WHAT WE SEE IS REALLY 8537 04:42:36,400 --> 04:42:37,600 DIFFERENT. 8538 04:42:37,600 --> 04:42:39,160 IT'S NOT A CURVILINEAR FUNCTION, 8539 04:42:39,160 --> 04:42:42,080 IT'S A LINEAR FUNCTION. 8540 04:42:42,080 --> 04:42:44,120 AND THE DIFFERENCES BETWEEN 8541 04:42:44,120 --> 04:42:46,520 THOSE WITH AUTISM AND THOSE WITH 8542 04:42:46,520 --> 04:42:49,200 DOWN SYNDROME RAISE MANY, MANY 8543 04:42:49,200 --> 04:42:50,080 QUESTIONS THAT WE DON'T HAVE 8544 04:42:50,080 --> 04:42:52,040 TIME TO DELVE INTO TODAY, BUT 8545 04:42:52,040 --> 04:42:53,560 THESE QUESTIONS WARRANT FUTURE 8546 04:42:53,560 --> 04:42:55,720 RESEARCH. 8547 04:42:55,720 --> 04:42:57,120 TAKE A LOOK AT THIS ONE. 8548 04:42:57,120 --> 04:43:00,160 IT'S PRETTY SURPRISING. 8549 04:43:00,160 --> 04:43:05,760 NEXT SLIDE. 8550 04:43:05,760 --> 04:43:07,520 PATTERNS WE'VE OBSERVED IN 8551 04:43:07,520 --> 04:43:08,720 STUDIES OF THOSE WITH DOWN 8552 04:43:08,720 --> 04:43:11,600 SYNDROME AND THOSE WITH FRAGILE 8553 04:43:11,600 --> 04:43:13,680 X SYNDROME WITH INDICATORS SUCH 8554 04:43:13,680 --> 04:43:15,200 AS ADLs RAISE A QUESTION 8555 04:43:15,200 --> 04:43:17,240 WHETHER MID LIFE IS A PERIOD OF 8556 04:43:17,240 --> 04:43:19,720 RISK FOR AUTISTIC ADULTS. 8557 04:43:19,720 --> 04:43:20,720 I ASKED THIS NOT ONLY BECAUSE OF 8558 04:43:20,720 --> 04:43:21,920 OUR OWN RESEARCH BUT ALSO 8559 04:43:21,920 --> 04:43:25,280 BECAUSE OTHER STUDIES OF 8560 04:43:25,280 --> 04:43:27,200 POPULATION-BASED COHORT HAVE 8561 04:43:27,200 --> 04:43:29,920 FOUND THAT ADULTS WITH ASD HAVE 8562 04:43:29,920 --> 04:43:32,160 A SHORTER THAN AVERAGE LIFESPAN 8563 04:43:32,160 --> 04:43:32,560 BY ABOUT 20 YEARS. 8564 04:43:32,560 --> 04:43:37,200 SO THIS IS REALLY REMARKABLE 8565 04:43:37,200 --> 04:43:38,960 DIFFERENCE IN THE TERMS OF AGING 8566 04:43:38,960 --> 04:43:40,880 AND CONSEQUENCES OF POSSIBLY 8567 04:43:40,880 --> 04:43:43,520 FACTORS THAT LEAD TO POOR HEALTH 8568 04:43:43,520 --> 04:43:44,280 DURING OLDER YEARS. 8569 04:43:44,280 --> 04:43:45,800 ONE OF THESE STUDIES WAS 8570 04:43:45,800 --> 04:43:47,400 CONDUCTED IN SWEDEN AND ANOTHER 8571 04:43:47,400 --> 04:43:48,560 IN MARSHFIELD, WISCONSIN. 8572 04:43:48,560 --> 04:43:49,920 THEY USE VERY, VERY DIFFERENT 8573 04:43:49,920 --> 04:43:53,600 METHODS, THEY BOTH FOUND ABOUT A 8574 04:43:53,600 --> 04:43:54,560 20-YEAR DIFFERENCE IN TERMS OF 8575 04:43:54,560 --> 04:43:57,080 AVERAGE LIFESPAN. 8576 04:43:57,080 --> 04:44:01,000 SO BASED ON THOSE TWO STUDIES, 8577 04:44:01,000 --> 04:44:03,720 WE DECIDED TO USE OUR DATA TO 8578 04:44:03,720 --> 04:44:06,120 LOOK BACK DURING THE STUDY 8579 04:44:06,120 --> 04:44:09,600 PERIOD AND IN 2019, WE DID AN 8580 04:44:09,600 --> 04:44:12,600 EXHAUSTIVE SEARCH BOTH IN TERMS 8581 04:44:12,600 --> 04:44:16,400 OF FAMILY DATA BUT ALSO PUBLICLY 8582 04:44:16,400 --> 04:44:18,960 AVAILABLE INFORMATION ABOUT 8583 04:44:18,960 --> 04:44:20,280 DEATH, NATIONAL DEATH INDEX. 8584 04:44:20,280 --> 04:44:22,000 26 OF THE ADULTS IN OUR STUDY 8585 04:44:22,000 --> 04:44:23,080 DIED DURING THE STUDY PERIOD, 8586 04:44:23,080 --> 04:44:24,280 WHICH IS A SMALL PORTION OF OUR 8587 04:44:24,280 --> 04:44:24,840 COHORT. 8588 04:44:24,840 --> 04:44:27,840 THIS IS A VERY SMALL SAMPLE. 8589 04:44:27,840 --> 04:44:30,040 BUT HERE YOU CAN SEE THE AGES AT 8590 04:44:30,040 --> 04:44:32,200 WHICH THEY DIED, AND ALSO THE 8591 04:44:32,200 --> 04:44:35,320 CAUSES OF DEATH. 8592 04:44:35,320 --> 04:44:35,960 I'M SHOWING YOU THE CAUSES OF 8593 04:44:35,960 --> 04:44:36,680 DEATH BECAUSE EVERY TIME I 8594 04:44:36,680 --> 04:44:38,080 REPORT ON THIS, PEOPLE SAY WHAT 8595 04:44:38,080 --> 04:44:39,960 DID THEY DIE. 8596 04:44:39,960 --> 04:44:40,640 YOU CAN SEE SOME OF THE CAUSES 8597 04:44:40,640 --> 04:44:43,360 OF DEATH WERE VERY COMMON IN THE 8598 04:44:43,360 --> 04:44:45,080 POPULATION: CARDIAC, CANCER, 8599 04:44:45,080 --> 04:44:46,560 OTHER CAUSES OF DEATH WERE MUCH 8600 04:44:46,560 --> 04:44:48,240 LESS COMMON SUCH AS MEDICATION 8601 04:44:48,240 --> 04:44:52,440 SIDE EFFECTS OR SEIZURES, THERE 8602 04:44:52,440 --> 04:44:56,640 WAS A PATTERN OF CHOKING AS WELL 8603 04:44:56,640 --> 04:44:57,360 AS ONE OF THE ACCIDENTS. 8604 04:44:57,360 --> 04:45:04,080 SO THIS -- BECAUSE WE HAD 8605 04:45:04,080 --> 04:45:04,640 FOLLOWED THEM BEFORE THEIR 8606 04:45:04,640 --> 04:45:06,520 DEATH, WE ARE ABLE TO ASK THE 8607 04:45:06,520 --> 04:45:07,920 QUESTION, WHAT ARE THE RISK 8608 04:45:07,920 --> 04:45:10,400 FACTORS THAT PREDICTED 8609 04:45:10,400 --> 04:45:11,320 MORTALITY, THAT DIFFERENTIATED 8610 04:45:11,320 --> 04:45:14,880 THOSE WHO DIED FROM THOSE WHO 8611 04:45:14,880 --> 04:45:15,160 SURVIVED. 8612 04:45:15,160 --> 04:45:17,000 SO NOT SURPRISINGLY, OLDER AGE 8613 04:45:17,000 --> 04:45:18,000 AND WORSE HEALTH PREDICTED 8614 04:45:18,000 --> 04:45:18,360 MORTALITY. 8615 04:45:18,360 --> 04:45:23,600 THERE IS NO NEWS THERE SEX, 8616 04:45:23,600 --> 04:45:26,560 MALES AND FEMALES WERE NOT 8617 04:45:26,560 --> 04:45:28,160 SIMILAR AND I.D. STATUS DID NOT 8618 04:45:28,160 --> 04:45:30,120 PREDICT MORTALITY, SO THOSE WITH 8619 04:45:30,120 --> 04:45:31,800 AND WITHOUT DISABILITY WERE 8620 04:45:31,800 --> 04:45:32,400 EQUALLY LIKELY TO HAVE DIED 8621 04:45:32,400 --> 04:45:33,240 WITHIN OUR STUDY PERIOD. 8622 04:45:33,240 --> 04:45:35,280 BUT ABOVE AND BEYOND CONTROLLING 8623 04:45:35,280 --> 04:45:37,880 FOR AGE, HEALTH, SEX AND I.D. 8624 04:45:37,880 --> 04:45:39,200 STATUS, WHAT WE FOUND WAS THAT 8625 04:45:39,200 --> 04:45:40,640 THERE ARE TWO FACTORS THAT 8626 04:45:40,640 --> 04:45:46,280 EMERGED IN OUR STATISTICAL 8627 04:45:46,280 --> 04:45:47,200 ANALYSIS. 8628 04:45:47,200 --> 04:45:47,800 INDEPENDENCE, ACTIVITIES OF 8629 04:45:47,800 --> 04:45:49,680 DAILY LIVING SKILLS AND THE 8630 04:45:49,680 --> 04:45:51,800 OTHER WAS IMPAIRMENTS IN SOCIAL 8631 04:45:51,800 --> 04:45:52,680 RECIPROCITY IS PREDICTIVE OF 8632 04:45:52,680 --> 04:45:53,680 EARLY CHILDHOOD. 8633 04:45:53,680 --> 04:45:58,800 FOR EVERY 11-POINT LOWER ON OUR 8634 04:45:58,800 --> 04:46:02,160 MEASURE OF ADL SKILLS THERE WAS 8635 04:46:02,160 --> 04:46:03,480 9% INCREASED RISK OF DEATH 8636 04:46:03,480 --> 04:46:07,200 DURING THE STUDY PERIOD AND FOR 8637 04:46:07,200 --> 04:46:09,320 EVERY ONE POINT HIGHER ON 8638 04:46:09,320 --> 04:46:10,320 IMPAIRMENTS DURING EARLY 8639 04:46:10,320 --> 04:46:11,640 CHILDHOOD THERE WAS 26% 8640 04:46:11,640 --> 04:46:12,720 INCREASED RISK OF DEATH DURING 8641 04:46:12,720 --> 04:46:13,400 THE STUDY PERIOD. 8642 04:46:13,400 --> 04:46:14,840 SO WE HAVE TO ASK A QUESTION 8643 04:46:14,840 --> 04:46:15,880 WHICH IS THE SAME QUESTION THAT 8644 04:46:15,880 --> 04:46:18,920 JOE HAS RAISED IN MANY OF THE 8645 04:46:18,920 --> 04:46:20,400 SPEAKERS ESPECIALLY DURING THE 8646 04:46:20,400 --> 04:46:20,960 LIVED EXPERIENCE PANEL HAVE 8647 04:46:20,960 --> 04:46:22,160 RAISED AS WELL, AND THAT IS 8648 04:46:22,160 --> 04:46:23,360 WHETHER THESE PATTERNS ARE DUE 8649 04:46:23,360 --> 04:46:26,720 TO BARRIERS IN HEALTHCARE AND 8650 04:46:26,720 --> 04:46:28,120 SERVICES, LIFESTYLE FACTORS, 8651 04:46:28,120 --> 04:46:29,320 WHICH EXIST, THERE'S NO DOUBT 8652 04:46:29,320 --> 04:46:31,800 ABOUT THOSE BARRIERS, OR ARE 8653 04:46:31,800 --> 04:46:33,160 SOME OF THE DIFFERENCES, SOME OF 8654 04:46:33,160 --> 04:46:35,400 THE FACTORS THAT EMERGE INHERENT 8655 04:46:35,400 --> 04:46:36,400 TO AUTISM? 8656 04:46:36,400 --> 04:46:38,560 OR SOME COMBINATION OF BOTH. 8657 04:46:38,560 --> 04:46:40,640 AND THESE ARE FACTORS THAT 8658 04:46:40,640 --> 04:46:42,680 REQUIRE ADDITIONAL RESEARCH, A 8659 04:46:42,680 --> 04:46:44,360 GREAT DEAL OF ADDITIONAL 8660 04:46:44,360 --> 04:46:48,240 RESEARCH WELL BEYOND OUR SMALL 8661 04:46:48,240 --> 04:46:50,520 SINGLE STUDY. 8662 04:46:50,520 --> 04:46:54,800 SO IT WOULD BE UNWISE AND 8663 04:46:54,800 --> 04:46:55,680 SKIPPING A VERY IMPORTANT TOPIC 8664 04:46:55,680 --> 04:46:57,600 IF I DIDN'T MENTION SOMETHING 8665 04:46:57,600 --> 04:46:59,280 ABOUT PARENTAL DEATH IN A STUDY 8666 04:46:59,280 --> 04:47:01,680 OF AGING AND AUTISM. 8667 04:47:01,680 --> 04:47:05,000 I HAVE INTERVIEWED AND 8668 04:47:05,000 --> 04:47:05,560 INTERACTED WITH HUNDREDS OF 8669 04:47:05,560 --> 04:47:06,880 FAMILIES WHO HAVE A SON OR 8670 04:47:06,880 --> 04:47:09,240 DAUGHTER WITH AUTISM, AND THE 8671 04:47:09,240 --> 04:47:12,040 MOST COMMON INTERACTION INVOLVES 8672 04:47:12,040 --> 04:47:13,640 THE QUESTION, WHAT WILL HAPPEN 8673 04:47:13,640 --> 04:47:15,280 TO HIM OR HER AFTER WE'RE GONE. 8674 04:47:15,280 --> 04:47:16,600 AND YOU HEARD COMMENTS ABOUT 8675 04:47:16,600 --> 04:47:19,160 THAT TODAY. 8676 04:47:19,160 --> 04:47:19,800 THIS FATHER SAID IN CARING FOR 8677 04:47:19,800 --> 04:47:21,760 HIM, FAMILY, FRIENDS AND 8678 04:47:21,760 --> 04:47:22,600 INSTITUTIONS HAVE FREQUENTLY LET 8679 04:47:22,600 --> 04:47:24,560 US DOWN, WE'RE ON OUR OWN WITH 8680 04:47:24,560 --> 04:47:25,440 HIM, THE GREATEST FEAR IS WHAT 8681 04:47:25,440 --> 04:47:28,400 HAPPENS WHEN WE'RE GONE. 8682 04:47:28,400 --> 04:47:30,280 WE DETERMINED THROUGH OUR 8683 04:47:30,280 --> 04:47:33,880 ONGOING STUDY, WHICH INCLUDED 8684 04:47:33,880 --> 04:47:34,720 FAMILY EVEN AFTER THE PRIMARY 8685 04:47:34,720 --> 04:47:36,480 SOURCE OF FAMILY SUPPORT WHO WAS 8686 04:47:36,480 --> 04:47:38,840 ALMOST ALWAYS THE MOTHER AFTER 8687 04:47:38,840 --> 04:47:41,440 SHE PASSED AWAY AND WE ASKED -- 8688 04:47:41,440 --> 04:47:42,600 WE CHECKED WHO WAS THE PRIMARY 8689 04:47:42,600 --> 04:47:46,040 SOURCE OF FAMILY SUPPORT 8690 04:47:46,040 --> 04:47:46,720 SUBSEQUENTLY, IN 12 INSTANCES IT 8691 04:47:46,720 --> 04:47:48,800 WAS A SIBLING, IN FOUR, A 8692 04:47:48,800 --> 04:47:52,680 FATHER, BUT IN SIX OF THE 22 8693 04:47:52,680 --> 04:47:53,680 FAMILIES IN WHICH THERE WAS A 8694 04:47:53,680 --> 04:47:55,240 LOSS OF A MOTHER, THERE WAS NO 8695 04:47:55,240 --> 04:47:59,160 FAMILY MEMBER WHO WAS PROVIDING 8696 04:47:59,160 --> 04:48:00,680 ANY FAMILY SUPPORT FOR THE ALSO 8697 04:48:00,680 --> 04:48:03,160 AGING INDIVIDUAL WITH AUTISM. 8698 04:48:03,160 --> 04:48:05,040 ALL OF US NEED FAMILY SUPPORT 8699 04:48:05,040 --> 04:48:06,840 ACROSS THE LIFE COURSE, BUT 8700 04:48:06,840 --> 04:48:08,040 CERTAINLY IN OUR OLDER YEARS, 8701 04:48:08,040 --> 04:48:10,800 AND SO THE FACT THAT SIX OF THE 8702 04:48:10,800 --> 04:48:14,480 22 HAD NO FAMILY MEMBER SUPPORT, 8703 04:48:14,480 --> 04:48:18,440 IT'S A VERY IMPORTANT CONCERN. 8704 04:48:18,440 --> 04:48:20,400 WE ALSO DETERMINED WHERE THESE 8705 04:48:20,400 --> 04:48:21,600 ADULTS LIVED AFTER THEIR MOTHER 8706 04:48:21,600 --> 04:48:22,120 DIED. 8707 04:48:22,120 --> 04:48:23,680 13 WERE IN GROUP HOMES, ONE WITH 8708 04:48:23,680 --> 04:48:25,200 A FATHER, TWO WITH SIBLINGS. 8709 04:48:25,200 --> 04:48:27,960 FOUR PEOPLE LIVED INDEPENDENTLY, 8710 04:48:27,960 --> 04:48:29,560 TWO OF THOSE WITH SUPPORT. 8711 04:48:29,560 --> 04:48:32,040 ONE LISTED HIS RESIDENCE AS A 8712 04:48:32,040 --> 04:48:33,320 COLLEGE DORM AND WE HAD MISSING 8713 04:48:33,320 --> 04:48:36,040 DATA ON ONE MORE. 8714 04:48:36,040 --> 04:48:37,680 AGAIN, A VERY SMALL SNAPSHOT 8715 04:48:37,680 --> 04:48:39,400 STARTING FROM A COHORT AS LARGE 8716 04:48:39,400 --> 04:48:41,240 AS 406, BUT I WANTED TO SHARE 8717 04:48:41,240 --> 04:48:44,400 THAT WITH YOU TODAY. 8718 04:48:44,400 --> 04:48:46,720 SO TOWARD THE END OF MY 8719 04:48:46,720 --> 04:48:47,400 PRESENTATION IN THE NEXT SLIDE, 8720 04:48:47,400 --> 04:48:49,320 I'D LIKE TO SAY A FEW WORDS 8721 04:48:49,320 --> 04:48:50,240 ABOUT AN AGENDA FOR FUTURE 8722 04:48:50,240 --> 04:48:52,040 RESEARCH ON AGING AND AUTISM, 8723 04:48:52,040 --> 04:48:54,640 BUILDING ON JOE'S AGENDA AND NOT 8724 04:48:54,640 --> 04:48:56,360 REPEATING IT. 8725 04:48:56,360 --> 04:48:58,880 WE OBVIOUSLY NEED TO EXPAND THE 8726 04:48:58,880 --> 04:49:00,880 REACH OF OUR RESEARCH COHORTS 8727 04:49:00,880 --> 04:49:02,320 AND INCLUDE UNDERSERVED AND 8728 04:49:02,320 --> 04:49:05,160 DIVERSE POPULATIONS AND 8729 04:49:05,160 --> 04:49:06,160 LONGITUDINAL -- AS WELL AS 8730 04:49:06,160 --> 04:49:07,040 CROSS-SECTIONAL STUDIES OF MID 8731 04:49:07,040 --> 04:49:09,400 LIFE AND OLDER AUTISTIC ADULTS. 8732 04:49:09,400 --> 04:49:12,480 WE HAVE BEEN REMISS IN INCLUDING 8733 04:49:12,480 --> 04:49:15,960 DIVERSE POPULATIONS AS WE HAVE 8734 04:49:15,960 --> 04:49:16,520 BEGUN TO PUT OUR TOE IN THE 8735 04:49:16,520 --> 04:49:17,600 WATER IN THIS IMPORTANT AREA OF 8736 04:49:17,600 --> 04:49:18,240 RESEARCH. 8737 04:49:18,240 --> 04:49:22,680 IT'S REALLY IMPORTANT TO STUDY 8738 04:49:22,680 --> 04:49:23,600 HOW AUTISM AFFECTS AGING AND THE 8739 04:49:23,600 --> 04:49:24,240 LIVED EXPERIENCE PANEL SAID IT 8740 04:49:24,240 --> 04:49:26,320 FAR BETTER THAN I COULD EVER 8741 04:49:26,320 --> 04:49:27,640 RAISE THIS POINT. 8742 04:49:27,640 --> 04:49:28,920 BUT THE STRESS OF HAVING AUTISM, 8743 04:49:28,920 --> 04:49:30,600 THE GENETIC RISK, THE LIMITED 8744 04:49:30,600 --> 04:49:33,080 ACCESS TO HEALTHCARE, THE SOCIAL 8745 04:49:33,080 --> 04:49:34,800 ISOLATION, THE LONG TERM 8746 04:49:34,800 --> 04:49:35,480 POLYPHARMACY, THESE ARE ALL 8747 04:49:35,480 --> 04:49:36,760 IMPORTANT FACTORS TO MEASURE AS 8748 04:49:36,760 --> 04:49:38,960 WE THINK ABOUT RESEARCH IN THE 8749 04:49:38,960 --> 04:49:41,880 FUTURE THAT ADDRESSES THE LACK 8750 04:49:41,880 --> 04:49:45,280 OF RESEARCH ON AGING AND AUTISM. 8751 04:49:45,280 --> 04:49:47,040 HOW AUTISTIC INDIVIDUALS COPE 8752 04:49:47,040 --> 04:49:48,600 WITH AGING-RELATED LOSS AND 8753 04:49:48,600 --> 04:49:50,280 GRIEF IS AN UNTAPPED AREA OF 8754 04:49:50,280 --> 04:49:52,200 WORK THAT ALSO EMERGED IN THE 8755 04:49:52,200 --> 04:49:53,200 LIVED EXPERIENCE PANEL AND 8756 04:49:53,200 --> 04:49:54,520 CLEARLY WE NEED TO INCLUDE 8757 04:49:54,520 --> 04:49:56,160 MULTIPLE VOICES AS WE CRAFT THE 8758 04:49:56,160 --> 04:49:58,760 RESEARCH AGENDA GOING FORWARD. 8759 04:49:58,760 --> 04:50:00,160 THE ONE THING I THINK WE CAN ALL 8760 04:50:00,160 --> 04:50:02,720 AGREE UPON IS WE'VE ONLY JUST 8761 04:50:02,720 --> 04:50:04,760 BEGUN TO UNDERSTAND AGING AND 8762 04:50:04,760 --> 04:50:06,680 AUTISM, AND ALSO THIS LIFE STAGE 8763 04:50:06,680 --> 04:50:08,440 IS LIKELY TO BE AS COMPLEX AS 8764 04:50:08,440 --> 04:50:11,920 AUTISM IN EARLIER LIFE STAGES. 8765 04:50:11,920 --> 04:50:12,480 COMPLEXITIES ON TOP OF 8766 04:50:12,480 --> 04:50:16,080 COMPLEXITIES. 8767 04:50:16,080 --> 04:50:17,360 SO FOR MY LAST SLIDE, I'D LIKE 8768 04:50:17,360 --> 04:50:19,400 TO SAY A FEW ACKNOWLEDGMENTS AND 8769 04:50:19,400 --> 04:50:20,160 THANK YOUS CLEARLY TO THE 8770 04:50:20,160 --> 04:50:21,200 SEVERAL HUNDRED PARTICIPANTS IN 8771 04:50:21,200 --> 04:50:25,440 OUR STUDY AND MY CO-LEADERS OF 8772 04:50:25,440 --> 04:50:29,560 THE RESEARCH GOING FORWARD. 8773 04:50:29,560 --> 04:50:31,280 I'D LIKE TO ALSO LIST THE FORMER 8774 04:50:31,280 --> 04:50:34,680 MEMBERS OF OUR RESEARCH GROUP. 8775 04:50:34,680 --> 04:50:37,960 YOU KNOW SOME OF THEM, JULIE 8776 04:50:37,960 --> 04:50:40,600 TAYLOR, PAUL SHATTUCK EARLIER 8777 04:50:40,600 --> 04:50:41,440 TODAY. 8778 04:50:41,440 --> 04:50:43,520 RESEARCH WE'VE CONDUCTED ON 8779 04:50:43,520 --> 04:50:44,600 AGING AND AUTISM AND ALSO I'D 8780 04:50:44,600 --> 04:50:46,160 LIKE TO -- I'M VERY GRATEFUL TO 8781 04:50:46,160 --> 04:50:48,840 OUR FUNDING SOURCES, NIA AS WELL 8782 04:50:48,840 --> 04:50:52,360 AS NICHD, NIMH AND AUTISM 8783 04:50:52,360 --> 04:50:54,600 SPEAKS, BUT NIA WAS WITH US FROM 8784 04:50:54,600 --> 04:50:55,960 THE VERY BEGINNING BECAUSE THEY 8785 04:50:55,960 --> 04:50:57,840 SAW THIS AS A TWO-GENERATION 8786 04:50:57,840 --> 04:50:59,720 AGING FAMILY AS THE PARENTS AGE, 8787 04:50:59,720 --> 04:51:01,000 THE SIBLINGS AGE, AND THE 8788 04:51:01,000 --> 04:51:03,920 INDIVIDUALS ON THE AUTISM 8789 04:51:03,920 --> 04:51:04,400 SPECTRUM AGE. 8790 04:51:04,400 --> 04:51:05,240 WE HAVE TO THINK ABOUT THIS 8791 04:51:05,240 --> 04:51:05,760 TOGETHER. 8792 04:51:05,760 --> 04:51:10,760 SO THANK YOU ALL VERY MUCH. 8793 04:51:10,760 --> 04:51:13,280 >>THANK YOU VERY MUCH 8794 04:51:13,280 --> 04:51:13,880 DR. MAILICK, DR. PIVEN, FOR 8795 04:51:13,880 --> 04:51:14,880 GIVING THUS REALLY WONDERFUL 8796 04:51:14,880 --> 04:51:17,560 OVERVIEW. 8797 04:51:17,560 --> 04:51:19,240 WE NOW HERALD THE VOICES OF 8798 04:51:19,240 --> 04:51:22,040 LIVED EXPERIENCE, BOTH WITH 8799 04:51:22,040 --> 04:51:24,120 INDIVIDUALS WITH AUTISM AND 8800 04:51:24,120 --> 04:51:25,200 CAREGIVERS AND FAMILY MEMBERS OF 8801 04:51:25,200 --> 04:51:27,000 THOSE INDIVIDUALS, AS WELL AS 8802 04:51:27,000 --> 04:51:29,800 SOME IDEA OF THE STATE OF THE 8803 04:51:29,800 --> 04:51:33,160 SCIENCE ON ISSUES AND CHALLENGES 8804 04:51:33,160 --> 04:51:35,640 FOR INDIVIDUALS AND FAMILIES OF 8805 04:51:35,640 --> 04:51:43,760 INDIVIDUALS WITH AUTISM. 8806 04:51:43,760 --> 04:51:47,680 NOW IS AN OPPORTUNITY FOR THOSE 8807 04:51:47,680 --> 04:51:49,920 OF US AS A COMMITTEE TO ASK 8808 04:51:49,920 --> 04:51:56,800 QUESTIONS TQUESTIONS. 8809 04:51:56,800 --> 04:51:58,160 PLEASE FEEL FREE TO SUBMIT YOUR 8810 04:51:58,160 --> 04:52:00,880 COMMENDS TO THE "SEND COMMENTS" 8811 04:52:00,880 --> 04:52:04,400 COHOST AND ALSO TO RAISE YOUR 8812 04:52:04,400 --> 04:52:05,240 HAND IF YOU'D LIKE TO BRING 8813 04:52:05,240 --> 04:52:14,440 THOSE COMMENTS TO LIGHT, PLEASE. 8814 04:52:14,440 --> 04:52:15,280 DENA, GO RIGHT AHEAD. 8815 04:52:15,280 --> 04:52:16,600 >>THANK YOU. 8816 04:52:16,600 --> 04:52:17,240 I'M SORRY, CAN WE TAKE THAT 8817 04:52:17,240 --> 04:52:18,000 SLIDE DOWN AND PUT THE SCREEN UP 8818 04:52:18,000 --> 04:52:19,680 SO WE CAN SEE PEOPLE? 8819 04:52:19,680 --> 04:52:21,120 >>THAT WOULD BE GREAT. 8820 04:52:21,120 --> 04:52:21,920 YEAH, LET'S DO THAT. 8821 04:52:21,920 --> 04:52:24,440 >>I JUST WANTED TO SAY, 8822 04:52:24,440 --> 04:52:25,440 DR. MAILICK, I APPRECIATE YOUR 8823 04:52:25,440 --> 04:52:26,360 WORK. 8824 04:52:26,360 --> 04:52:28,760 I'VE BEEN FOLLOWING YOU FOR SO 8825 04:52:28,760 --> 04:52:29,280 LONG. 8826 04:52:29,280 --> 04:52:30,320 BUT I WANTED TO ASK THIS 8827 04:52:30,320 --> 04:52:31,160 QUESTION. 8828 04:52:31,160 --> 04:52:34,440 I HAVE CONCERNS THAT MANY OF THE 8829 04:52:34,440 --> 04:52:36,080 STUDENTS WHO ARE DEGREE-SEEKING, 8830 04:52:36,080 --> 04:52:39,160 WHO MAY BE CLAWING THEIR WAY TO 8831 04:52:39,160 --> 04:52:41,440 A BACHELOR'S DEGREE OR CLAWING 8832 04:52:41,440 --> 04:52:44,360 THEIR WAY THROUGH A HIGH SCHOOL 8833 04:52:44,360 --> 04:52:46,080 DIPLOMA ARE SIMULTANEOUSLY BEING 8834 04:52:46,080 --> 04:52:47,240 DENIED ACCESS TO INDEPENDENT 8835 04:52:47,240 --> 04:52:49,880 LIVING SKILL TRAINING AND 8836 04:52:49,880 --> 04:52:50,520 SUPPORT. 8837 04:52:50,520 --> 04:52:53,800 SO WE OFTEN SEE THESE SAME 8838 04:52:53,800 --> 04:52:55,080 STUDENTS GO AWAY TO COLLEGE AND 8839 04:52:55,080 --> 04:52:56,960 CRASH AND BURN IN THE FIRST 8840 04:52:56,960 --> 04:52:59,520 SEMESTER OR BECOME SUICIDAL 8841 04:52:59,520 --> 04:53:01,120 BECAUSE THEY'RE NOT COPING OR, 8842 04:53:01,120 --> 04:53:03,800 YOU KNOW, IN ALL OF THESE 8843 04:53:03,800 --> 04:53:04,360 DYNAMICS, WHEN THE PARENT IS 8844 04:53:04,360 --> 04:53:05,680 GONE AND THE PARENT HAS BEEN 8845 04:53:05,680 --> 04:53:08,080 DOING EVERYTHING FOR THEM, 8846 04:53:08,080 --> 04:53:09,960 THEY'RE NOT EQUIPPED BECAUSE 8847 04:53:09,960 --> 04:53:11,800 PEOPLE JUST EXPECT THEM TO BE 8848 04:53:11,800 --> 04:53:13,000 ABLE TO FIGURE IT OUT. 8849 04:53:13,000 --> 04:53:14,960 AND I CAN TELL YOU FROM CHATTING 8850 04:53:14,960 --> 04:53:16,240 WITH SOME OF MY FRIENDS TODAY, 8851 04:53:16,240 --> 04:53:19,040 ALL OF US HAVE SECRET THINGS 8852 04:53:19,040 --> 04:53:22,040 THAT WE CAN'T EVEN CONVEY 8853 04:53:22,040 --> 04:53:23,080 PUBLICLY BECAUSE PEOPLE WILL 8854 04:53:23,080 --> 04:53:24,200 JUDGE US FOR IT. 8855 04:53:24,200 --> 04:53:26,600 WHICH ARE ACTUALLY GAPS IN THESE 8856 04:53:26,600 --> 04:53:28,320 SKILLSETS, RIGHT? 8857 04:53:28,320 --> 04:53:29,440 WHETHER IT'S BEING ABLE TO CALL 8858 04:53:29,440 --> 04:53:30,720 A DOCTOR, KNOW WHEN YOUR MEDS 8859 04:53:30,720 --> 04:53:33,480 ARE GOING TO EXPIRE, KEEP YOUR 8860 04:53:33,480 --> 04:53:34,640 HOUSE CLEAN, FEED YOURSELF. 8861 04:53:34,640 --> 04:53:37,160 CAN YOU COMMENT ON WHAT YOU'RE 8862 04:53:37,160 --> 04:53:38,560 OBSERVING IN YOUR RESEARCH 8863 04:53:38,560 --> 04:53:42,160 RELATED TO HOW THAT'S LOOKING? 8864 04:53:42,160 --> 04:53:43,840 >>YOU RAISE A VERY, VERY GOOD 8865 04:53:43,840 --> 04:53:45,240 POINT, AND THANK YOU FOR RAISING 8866 04:53:45,240 --> 04:53:45,400 IT. 8867 04:53:45,400 --> 04:53:47,520 I THINK WHAT WE HAVE DONE IS 8868 04:53:47,520 --> 04:53:49,280 DIVIDED THE POPULATION WITH 8869 04:53:49,280 --> 04:53:51,040 AUTISM INTO TWO GROUPS WHEN THEY 8870 04:53:51,040 --> 04:53:52,840 ARE IN HIGH SCHOOL. 8871 04:53:52,840 --> 04:53:54,920 THOSE WHO ARE GOING TO GO ON TO 8872 04:53:54,920 --> 04:53:56,280 COLLEGE, WE HOPE WILL GO ON TO 8873 04:53:56,280 --> 04:53:57,960 COLLEGE AND THOSE WHO WILL NOT. 8874 04:53:57,960 --> 04:53:59,440 AND IT'S OFTEN DIVIDED BY I.D., 8875 04:53:59,440 --> 04:54:00,640 BUT IT SHOULDN'T BE. 8876 04:54:00,640 --> 04:54:03,680 AND THOSE WHO ARE DIVIDED INTO 8877 04:54:03,680 --> 04:54:04,320 THE SECOND GROUP, WHO ARE NOT 8878 04:54:04,320 --> 04:54:05,520 EXPECTED TO GO ON TO COLLEGE, 8879 04:54:05,520 --> 04:54:09,960 THEY GET REALLY GOOD TRAINING IN 8880 04:54:09,960 --> 04:54:11,160 MAINTAINING OR DEVELOPING THEIR 8881 04:54:11,160 --> 04:54:11,840 ADL SKILLS. 8882 04:54:11,840 --> 04:54:15,000 AND THEY OFTEN HAVE CAPACITIES 8883 04:54:15,000 --> 04:54:17,240 AND EXPERIENCES THAT WE DO NOT 8884 04:54:17,240 --> 04:54:18,480 PROVIDE TO THOSE WHO ARE ON THE 8885 04:54:18,480 --> 04:54:19,560 ACADEMIC TRACK. 8886 04:54:19,560 --> 04:54:22,280 SO THIS ENDS UP LEADING TO ALL 8887 04:54:22,280 --> 04:54:23,840 THE THINGS YOU JUST SAID, YOU 8888 04:54:23,840 --> 04:54:25,280 KNOW FAR BETTER THAN I DO ABOUT 8889 04:54:25,280 --> 04:54:27,080 THE RANGE OF PROBLEMS THAT 8890 04:54:27,080 --> 04:54:29,160 INDIVIDUALS HAVE WHO HAVE GREAT 8891 04:54:29,160 --> 04:54:31,760 STRENGTHS, AS MANY ON THE AUTISM 8892 04:54:31,760 --> 04:54:32,320 SPECTRUM DO, AS WELL AS, YOU 8893 04:54:32,320 --> 04:54:33,280 KNOW, I HAVE NEVER REALLY 8894 04:54:33,280 --> 04:54:35,120 THOUGHT OF THEM AS SECRET 8895 04:54:35,120 --> 04:54:35,720 WEAKNESSES BUT I CAN SEE WHAT 8896 04:54:35,720 --> 04:54:36,240 YOU MEAN BY THAT. 8897 04:54:36,240 --> 04:54:38,440 SO I THINK IF WE DON'T DIVIDE 8898 04:54:38,440 --> 04:54:40,800 THE WORLD UP INTO SO MANY 8899 04:54:40,800 --> 04:54:42,160 UNREALISTIC PIECES AND WE THINK 8900 04:54:42,160 --> 04:54:45,160 ABOUT THE IMPORTANCE OF WHAT -- 8901 04:54:45,160 --> 04:54:47,240 I MEAN, AGAIN, NOT TO OVERSTATE 8902 04:54:47,240 --> 04:54:49,640 THE IMPORTANCE OF OUR STUDY AS 8903 04:54:49,640 --> 04:54:51,200 JUST ONE STUDY, BUT THAT 8904 04:54:51,200 --> 04:54:53,000 CURVILINEAR RELATIONSHIP BETWEEN 8905 04:54:53,000 --> 04:54:54,400 AGE AND ADL SKILLS HAS GOT ME 8906 04:54:54,400 --> 04:54:59,360 VERY WORRIED ABOUT AUTISM AS 8907 04:54:59,360 --> 04:55:00,080 INDIVIDUALS AS THEY MOVE INTO 8908 04:55:00,080 --> 04:55:03,920 MID LIFE AND OLDER AGE. 8909 04:55:03,920 --> 04:55:06,520 >>THANK YOU, DR. MAILICK, THANK 8910 04:55:06,520 --> 04:55:08,120 YOU, DENA, FOR THE QUESTION. 8911 04:55:08,120 --> 04:55:09,720 I BELIEVE STEVEN HAS A COMMENT 8912 04:55:09,720 --> 04:55:10,360 OR QUESTION THAT HE'D LIKE TO 8913 04:55:10,360 --> 04:55:10,680 READ. 8914 04:55:10,680 --> 04:55:20,800 STEVEN. 8915 04:55:23,000 --> 04:55:25,200 >I THINK YOU'RE MUTED. 8916 04:55:25,200 --> 04:55:25,880 CAN'T QUITE HEAR YOU. 8917 04:55:25,880 --> 04:55:27,000 >>HELLO? 8918 04:55:27,000 --> 04:55:27,800 >>NOW I CAN HEAR YOU. 8919 04:55:27,800 --> 04:55:28,640 GO RIGHT AHEAD. 8920 04:55:28,640 --> 04:55:30,560 >>THANKS. 8921 04:55:30,560 --> 04:55:34,480 THIS MESSAGE IS FOR MORENIKE. 8922 04:55:34,480 --> 04:55:36,000 I'M FEELING A LITTLE SHEEPISH 8923 04:55:36,000 --> 04:55:38,400 MAKING THIS REMARK BECAUSE OF 8924 04:55:38,400 --> 04:55:39,720 SOME THAT HAS BEEN SHARED ABOUT 8925 04:55:39,720 --> 04:55:41,640 THERE NEEDING TO BE MORE EQUITY 8926 04:55:41,640 --> 04:55:43,920 IN TERMS OF IACC MEMBERS' 8927 04:55:43,920 --> 04:55:44,720 ABILITY TO CONTRIBUTE AT 8928 04:55:44,720 --> 04:55:45,520 MEETINGS. 8929 04:55:45,520 --> 04:55:47,680 I WILL TRY TO BE CONCISE. 8930 04:55:47,680 --> 04:55:48,680 FIRST I WANT TO THANK DR. HARRIS 8931 04:55:48,680 --> 04:55:51,840 FOR SHARING YOUR PERSPECTIVE AS 8932 04:55:51,840 --> 04:55:52,480 AN ADULT LIVING AT THE 8933 04:55:52,480 --> 04:55:54,520 INTERSECTION OF DISABILITY, RACE 8934 04:55:54,520 --> 04:55:55,000 AND GENDER. 8935 04:55:55,000 --> 04:55:56,400 SO MUCH OF WHAT YOU SHARED 8936 04:55:56,400 --> 04:55:58,360 RESONATED WITH ME AND 8937 04:55:58,360 --> 04:56:00,080 ILLUSTRATES THE REALITY OF MANY 8938 04:56:00,080 --> 04:56:02,840 INDIVIDUALS FROM OUR COMMUNITY. 8939 04:56:02,840 --> 04:56:05,320 I ALSO APPRECIATE RUTH JONES' 8940 04:56:05,320 --> 04:56:07,280 OVERVIEW OF HER FAMILY'S 8941 04:56:07,280 --> 04:56:09,400 EXPERIENCES AS A BLACK FAMILY IN 8942 04:56:09,400 --> 04:56:10,880 THE SOUTHEAST DURING A TIME THAT 8943 04:56:10,880 --> 04:56:12,960 LITTLE WAS KNOWN ABOUT AUTISM 8944 04:56:12,960 --> 04:56:15,120 AND ESPECIALLY THE 8945 04:56:15,120 --> 04:56:17,320 COMMUNITY-BASED HOUSING AND 8946 04:56:17,320 --> 04:56:19,480 SENSORY TOOLS PETER HAS ACCESSED 8947 04:56:19,480 --> 04:56:21,000 AS A BLACK OLDER ADULT ON THE 8948 04:56:21,000 --> 04:56:23,320 SPECTRUM WITH INTELLECTUAL 8949 04:56:23,320 --> 04:56:24,600 DISABILITY WHO IS MINIMALLY 8950 04:56:24,600 --> 04:56:26,480 SPEAKING WHO STRUGGLES WITH 8951 04:56:26,480 --> 04:56:27,680 ANXIETY. 8952 04:56:27,680 --> 04:56:29,840 THE HEALTH, HYGIENE, FINANCIAL 8953 04:56:29,840 --> 04:56:32,040 AND TRAUMA-RELATED CIRCUMSTANCES 8954 04:56:32,040 --> 04:56:34,640 YOU'VE SUMMARIZED ARE OF EXTREME 8955 04:56:34,640 --> 04:56:35,840 IMPORTANCE AND NEED TO BE 8956 04:56:35,840 --> 04:56:36,760 HIGHLIGHTED. 8957 04:56:36,760 --> 04:56:38,720 MY AUTISTIC CHILD ALSO HAD A 8958 04:56:38,720 --> 04:56:41,520 PROLAPSED RECTUM AND WAS UNABLE 8959 04:56:41,520 --> 04:56:43,280 TO COMMUNICATE DISCOMFORT USING 8960 04:56:43,280 --> 04:56:44,480 WORDS. 8961 04:56:44,480 --> 04:56:46,440 FURTHERMORE, AS I AM AN AUTISTIC 8962 04:56:46,440 --> 04:56:47,960 ADULT WHO HAS RECENTLY BEEN 8963 04:56:47,960 --> 04:56:50,480 DIAGNOSED WITH YOUNG ONSET 8964 04:56:50,480 --> 04:56:51,120 DEMENTIA, I APPRECIATE YOU 8965 04:56:51,120 --> 04:56:52,760 BRINGING THAT UP AS WELL. 8966 04:56:52,760 --> 04:56:54,760 THERE IS CURRENTLY MINIMAL 8967 04:56:54,760 --> 04:56:56,720 INFORMATION AND FEW RESOURCES 8968 04:56:56,720 --> 04:57:00,760 THAT ADDRESS THESE REALITIES. 8969 04:57:00,760 --> 04:57:04,880 ACQUIRED NEUROCOGNITIVE DI NEURS 8970 04:57:04,880 --> 04:57:06,440 SUS AS NEURODEGENERATIVE 8971 04:57:06,440 --> 04:57:07,400 DISABILITY SUCH AS MINE NEED TO 8972 04:57:07,400 --> 04:57:09,440 BE MORE ADEQUATELY INCORPORATED 8973 04:57:09,440 --> 04:57:10,440 INTO NEURODIVERSITY, AS RIGHT 8974 04:57:10,440 --> 04:57:12,640 NOW IT IS CONSPICUOUSLY ABSENT 8975 04:57:12,640 --> 04:57:15,000 AND HIGHLY STIGMATIZED. 8976 04:57:15,000 --> 04:57:18,280 JOHN AND LISA'S REMARKS ABOUT 8977 04:57:18,280 --> 04:57:21,240 SUICIDALITY, ANXIETY AND SOCIAL 8978 04:57:21,240 --> 04:57:23,520 ISOLATION AND SUE SWEZEY'S 8979 04:57:23,520 --> 04:57:25,480 COMMENTS ABOUT INADEQUATE 8980 04:57:25,480 --> 04:57:27,520 RESOURCES FOR OLDER ADULTS WERE 8981 04:57:27,520 --> 04:57:29,120 SIGNIFICANT AS WELL. 8982 04:57:29,120 --> 04:57:32,000 ALTHOUGH I THINK IT'S IMPORTANT 8983 04:57:32,000 --> 04:57:34,440 TO NOTE IN RESPONSE TO SUE'S 8984 04:57:34,440 --> 04:57:36,840 STATEMENT THAT THOUGH NOT ALL 8985 04:57:36,840 --> 04:57:39,120 QUITE A NUMBER OF AUTISTIC 8986 04:57:39,120 --> 04:57:40,760 INDIVIDUALS WHO MIGHT BE 8987 04:57:40,760 --> 04:57:44,040 PERCEIVED EXTERNALLY AS HIGH 8988 04:57:44,040 --> 04:57:45,320 ACHIEVING ARE INDEED VERY 8989 04:57:45,320 --> 04:57:47,080 FAMILIAR WITH AUTISTIC PEOPLE 8990 04:57:47,080 --> 04:57:50,600 WHO ARE NON-SPEAKING AND/OR HAVE 8991 04:57:50,600 --> 04:57:53,000 INTELLECTUAL DISABILITIES AND/OR 8992 04:57:53,000 --> 04:57:53,960 HIGHER SUPPORT NEEDS GIVEN THAT 8993 04:57:53,960 --> 04:57:56,360 MANY OF THESE INDIVIDUALS, 8994 04:57:56,360 --> 04:57:58,320 PEOPLE WHO SOME DESCRIBE AS 8995 04:57:58,320 --> 04:58:00,960 PROFOUNDLY AUTISTIC, ARE OFTEN 8996 04:58:00,960 --> 04:58:04,320 OUR SIBLINGS AND OUR CHILDREN. 8997 04:58:04,320 --> 04:58:05,760 OF NOTE, THOUGH, THAT MIGHT NOT 8998 04:58:05,760 --> 04:58:07,800 HAVE BEEN THE CASE PREVIOUSLY, 8999 04:58:07,800 --> 04:58:09,760 THIS IS TRUE OF NEARLY EVERY ONE 9000 04:58:09,760 --> 04:58:11,760 OF THE CURRENT AUTISTIC 9001 04:58:11,760 --> 04:58:15,600 INDIVIDUALS ON THIS VERY IACC 9002 04:58:15,600 --> 04:58:17,080 COMMITTEE WHO CARE AND SEEK TO 9003 04:58:17,080 --> 04:58:20,040 ADVOCATE FOR THE NEEDS OF OUR 9004 04:58:20,040 --> 04:58:20,920 LOVED ONES IN OUR COLLECTIVE 9005 04:58:20,920 --> 04:58:22,360 COMMUNITY ACROSS THE ENTIRE 9006 04:58:22,360 --> 04:58:23,680 AUTISM SPECTRUM. 9007 04:58:23,680 --> 04:58:25,400 LASTLY, THANK YOU TO DR. PIVEN 9008 04:58:25,400 --> 04:58:27,040 AND DR. MAILICK AS WELL FOR THE 9009 04:58:27,040 --> 04:58:30,720 IMPORTANT RESEARCH AND THE 9010 04:58:30,720 --> 04:58:34,920 SOBERING OBSERVATIONS YOU 9011 04:58:34,920 --> 04:58:35,160 PROVIDED. 9012 04:58:35,160 --> 04:58:36,360 >>THANK YOU. 9013 04:58:36,360 --> 04:58:36,960 ARE THERE OTHER QUESTIONS OR 9014 04:58:36,960 --> 04:58:37,920 COMMENTS FROM OTHER MEMBERS OF 9015 04:58:37,920 --> 04:58:38,840 THE IACC? 9016 04:58:38,840 --> 04:58:40,160 I DON'T HAVE ANY HANDS RAISED 9017 04:58:40,160 --> 04:58:43,680 JUST NOW. 9018 04:58:43,680 --> 04:58:45,160 I MIGHT OFFER A QUESTION MYSELF, 9019 04:58:45,160 --> 04:58:47,680 IF NO ONE IS -- LET'S GO WITH 9020 04:58:47,680 --> 04:58:50,040 JENNIFER JOHNSON FIRST. 9021 04:58:50,040 --> 04:58:53,640 >>FIRST I JUST WANT TO THANK 9022 04:58:53,640 --> 04:58:56,680 EVERYONE FOR THE REMARKS AND 9023 04:58:56,680 --> 04:58:59,880 PRESENTATIONS THAT THEY MADE. 9024 04:58:59,880 --> 04:59:01,720 IT WAS REALLY HELPFUL TO HEAR 9025 04:59:01,720 --> 04:59:02,360 FROM EVERYONE AND HEAR ABOUT THE 9026 04:59:02,360 --> 04:59:04,520 WORK THAT'S BEING DONE. 9027 04:59:04,520 --> 04:59:06,480 WE AT THE ADMINISTRATION FOR 9028 04:59:06,480 --> 04:59:09,000 COMMUNITY LIVING HAVE BEEN DOING 9029 04:59:09,000 --> 04:59:11,760 SOME WORK IN THIS AREA GIVEN THE 9030 04:59:11,760 --> 04:59:14,680 NEED AS WAS WELL DEMONSTRATED IN 9031 04:59:14,680 --> 04:59:20,600 THIS PANEL FOR ADDRESSING PEOPLE 9032 04:59:20,600 --> 04:59:21,440 DID DISABILITIES INCLUDING 9033 04:59:21,440 --> 04:59:24,280 PEOPLE WITH AUTISM AS THEY AGE. 9034 04:59:24,280 --> 04:59:26,160 WE HAVE SOME PROJECTS THAT WE 9035 04:59:26,160 --> 04:59:27,120 FUNDED, ONE LAST YEAR THAT WE 9036 04:59:27,120 --> 04:59:29,880 FUNDED TO BRIDGE AGING AND 9037 04:59:29,880 --> 04:59:32,640 DISABILITY SERVICES WITHIN THE 9038 04:59:32,640 --> 04:59:33,200 ADMINISTRATION FOR COMMUNITY 9039 04:59:33,200 --> 04:59:33,520 LIVING. 9040 04:59:33,520 --> 04:59:36,120 WE DO FUND -- WE HAVE THE OLDER 9041 04:59:36,120 --> 04:59:38,120 AMERICANS ACT THAT WE ADMINISTER 9042 04:59:38,120 --> 04:59:41,280 UNDER THE ADMINISTRATION ON 9043 04:59:41,280 --> 04:59:42,600 AGING THAT PROVIDES FUNDING TO 9044 04:59:42,600 --> 04:59:46,480 STATE UNITS ON AGING, AND THEY 9045 04:59:46,480 --> 04:59:48,400 ALSO THEN TURN THAT AROUND AND 9046 04:59:48,400 --> 04:59:50,320 PROVIDE FUNDING TO AREA AGENCIES 9047 04:59:50,320 --> 04:59:52,120 ON AGING. 9048 04:59:52,120 --> 04:59:54,000 AND SO THERE IS A NATIONWIDE 9049 04:59:54,000 --> 04:59:56,040 NETWORK OF AGING PROGRAMS. 9050 04:59:56,040 --> 05:00:01,200 WE ALSO PROVIDE FUNDING TO AGING 9051 05:00:01,200 --> 05:00:04,080 DISABILITY RESOURCE CENTERS, AND 9052 05:00:04,080 --> 05:00:07,520 WHILE THEY DON'T NECESSARILY 9053 05:00:07,520 --> 05:00:09,160 HAVE A LOT OF EXPERTISE AND 9054 05:00:09,160 --> 05:00:11,560 EXPERIENCE OBSERVING AUTISTIC 9055 05:00:11,560 --> 05:00:12,680 INDIVIDUALS, OUR PROJECT THAT WE 9056 05:00:12,680 --> 05:00:16,280 FUNDED IS INTENDED TO BETTER 9057 05:00:16,280 --> 05:00:17,360 BUILD THAT CAPACITY WITHIN THE 9058 05:00:17,360 --> 05:00:21,520 AGING NETWORK TO SUPPORT PEOPLE 9059 05:00:21,520 --> 05:00:24,600 WITH DISABILITIES INCLUDING 9060 05:00:24,600 --> 05:00:25,920 AUTISTIC INDIVIDUALS WITH A 9061 05:00:25,920 --> 05:00:26,640 PARTICULAR FOCUS ON SUPPORT FOR 9062 05:00:26,640 --> 05:00:28,320 FAMILIES AS WELL, AS THEY ARE 9063 05:00:28,320 --> 05:00:28,960 AGING. 9064 05:00:28,960 --> 05:00:33,200 I APPRECIATED THE POINT THAT WAS 9065 05:00:33,200 --> 05:00:35,400 MADE IN ONE OF THE SMALL 9066 05:00:35,400 --> 05:00:36,280 RESEARCH STUDIES ABOUT THE CARE 9067 05:00:36,280 --> 05:00:40,000 THAT'S OFTEN GIVEN BY MOTHERS 9068 05:00:40,000 --> 05:00:42,600 AND OTHER FAMILIES BUT MOTHERS 9069 05:00:42,600 --> 05:00:44,600 DO CERTAINLY BEAR THE -- MOST OF 9070 05:00:44,600 --> 05:00:47,520 THE RESPONSIBILITY FOR THEIR 9071 05:00:47,520 --> 05:00:48,320 ADULT CHILDREN WITH 9072 05:00:48,320 --> 05:00:50,480 DISABILITIES. 9073 05:00:50,480 --> 05:00:52,120 SO AS WE'RE THINKING ABOUT NOT 9074 05:00:52,120 --> 05:00:53,560 ONLY A RESEARCH AGENDA AROUND 9075 05:00:53,560 --> 05:00:55,200 AGING ADULTS WITH AUTISM, I HOPE 9076 05:00:55,200 --> 05:00:59,000 THAT WE ALSO THINK ABOUT THE 9077 05:00:59,000 --> 05:01:00,240 SERVICE AGENDA THAT WE NEED FOR 9078 05:01:00,240 --> 05:01:02,720 ADULTS WITH AUTISM, AND AGAIN, 9079 05:01:02,720 --> 05:01:07,040 HOW ARE AGING NETWORKS WITHIN 9080 05:01:07,040 --> 05:01:07,680 THE ADMINISTRATION FOR COMMUNITY 9081 05:01:07,680 --> 05:01:08,400 LIVING CAN BE A PART OF THAT 9082 05:01:08,400 --> 05:01:09,480 CONVERSATION AND THE WORK THAT 9083 05:01:09,480 --> 05:01:12,360 WE'RE DOING TO SUPPORT BUILDING 9084 05:01:12,360 --> 05:01:13,480 THEIR CAPACITY TO SERVE ADULTS 9085 05:01:13,480 --> 05:01:18,120 WITH DISABILITIES. 9086 05:01:18,120 --> 05:01:19,960 >>THANK YOU, JENNIFER. 9087 05:01:19,960 --> 05:01:22,040 I SAW HARI HAD HIS HAND UP FOR A 9088 05:01:22,040 --> 05:01:23,880 MOMENT BUT IT'S BACK DOWN AGAIN. 9089 05:01:23,880 --> 05:01:25,240 I DIDN'T KNOW IF YOU WANTED TO 9090 05:01:25,240 --> 05:01:26,160 MAKE A COMMENT? 9091 05:01:26,160 --> 05:01:28,600 LOOKS LIKE STEVEN -- GO AHEAD, 9092 05:01:28,600 --> 05:01:28,800 STEVEN. 9093 05:01:28,800 --> 05:01:32,400 >>I HAVE A COMMENT FROM HARI. 9094 05:01:32,400 --> 05:01:33,760 HE SAYS THERE ARE LIFELONG 9095 05:01:33,760 --> 05:01:35,640 PEOPLE LIKE ME WHO HAVE A LEG IN 9096 05:01:35,640 --> 05:01:37,840 BOTH FIELDS. 9097 05:01:37,840 --> 05:01:39,280 IN POST GRAD, BUT ALSO STILL 9098 05:01:39,280 --> 05:01:41,560 NEED LIFELONG SUPPORTS, 9099 05:01:41,560 --> 05:01:43,000 ESPECIALLY IN ADL. 9100 05:01:43,000 --> 05:01:45,080 ADD TO THAT WE ALREADY HAVE 9101 05:01:45,080 --> 05:01:48,680 MOVEMENT ISSUES FROM YOUNG AGE, 9102 05:01:48,680 --> 05:01:50,320 POSSIBLY FROM GREATER RISK FOR 9103 05:01:50,320 --> 05:01:52,080 PARKINSONISM, AND MORE AS WE 9104 05:01:52,080 --> 05:01:52,600 AGE. 9105 05:01:52,600 --> 05:01:54,760 HOW WILL THIS BE ACCOUNTED FOR? 9106 05:01:54,760 --> 05:01:55,320 BECAUSE IT SEEMS LIKE THE 9107 05:01:55,320 --> 05:01:59,360 THINKING IS ONE OR THE OTHER. 9108 05:01:59,360 --> 05:02:01,880 >>I DON'T KNOW IF EITHER OF OUR 9109 05:02:01,880 --> 05:02:03,680 SCIENTISTS WOULD LIKE TO ANSWER 9110 05:02:03,680 --> 05:02:05,040 THAT QUESTION REGARDING 9111 05:02:05,040 --> 05:02:07,600 INDIVIDUALS WHO COME IN TO 9112 05:02:07,600 --> 05:02:10,520 ADULTHOOD WITH PRE-EXISTING 9113 05:02:10,520 --> 05:02:14,720 MOVEMENT CONDITIONS. 9114 05:02:14,720 --> 05:02:17,240 >>I'M TRYING TO UNDO MY VIDEO 9115 05:02:17,240 --> 05:02:20,720 HERE. 9116 05:02:20,720 --> 05:02:21,920 WELL, I'LL JUST TALK WITHOUT THE 9117 05:02:21,920 --> 05:02:22,920 VIDEO. 9118 05:02:22,920 --> 05:02:23,800 I MEAN, I THINK, AGAIN, THE 9119 05:02:23,800 --> 05:02:26,640 ANSWER IS H, WE DON'T KNOW. 9120 05:02:26,640 --> 05:02:28,440 THE KEY POINT HERE IS WE CAN'T 9121 05:02:28,440 --> 05:02:29,680 MAKE ANY ASSUMPTIONS ABOUT THIS. 9122 05:02:29,680 --> 05:02:33,600 I THINK, YOU KNOW, IT'S SORT OF 9123 05:02:33,600 --> 05:02:34,920 ALL OF THE ABOVE. 9124 05:02:34,920 --> 05:02:36,800 I MEAN, I THINK THAT IT'S VERY 9125 05:02:36,800 --> 05:02:38,360 POSSIBLE THAT WHAT WE'RE SEEING 9126 05:02:38,360 --> 05:02:42,160 IS SOMETHING DIFFERENT FROM, YOU 9127 05:02:42,160 --> 05:02:43,600 KNOW, SORT OF THE USUAL WHAT WE 9128 05:02:43,600 --> 05:02:46,000 SEE IN PARKINSON'S. 9129 05:02:46,000 --> 05:02:48,280 WE HAVE LIFE EXPERIENCES THAT 9130 05:02:48,280 --> 05:02:49,080 CAN CONTRIBUTE. 9131 05:02:49,080 --> 05:02:50,960 MARSHA HAD A GREAT SLIDE ON 9132 05:02:50,960 --> 05:02:54,440 THAT. 9133 05:02:54,440 --> 05:02:54,960 STRESS. 9134 05:02:54,960 --> 05:02:56,080 ONE OF THE THINGS SHE DIDN'T 9135 05:02:56,080 --> 05:02:57,480 MENTION WAS SENSORY PROBLEMS AND 9136 05:02:57,480 --> 05:02:58,680 THE SORT OF ACCUMULATION OF THAT 9137 05:02:58,680 --> 05:03:02,160 ON OLDER AGE, SENSORY PROBLEMS 9138 05:03:02,160 --> 05:03:09,480 IMPACTING OUTCOMES ON COGNITIVE 9139 05:03:09,480 --> 05:03:09,960 FUNCTION. 9140 05:03:09,960 --> 05:03:11,760 SO I THINK WHAT I CAN SAY THE 9141 05:03:11,760 --> 05:03:12,880 MAIN POINT OF OUR TWO SHORT 9142 05:03:12,880 --> 05:03:14,840 TALKS IS TO BASICALLY JUST SAY, 9143 05:03:14,840 --> 05:03:17,800 YOU KNOW, THERE'S A LOT OF STUFF 9144 05:03:17,800 --> 05:03:19,320 HERE THAT NEEDS TO BE STUDIED. 9145 05:03:19,320 --> 05:03:21,080 AND THESE STUDIES THAT HAVE BEEN 9146 05:03:21,080 --> 05:03:23,720 DONE ARE REALLY LITERALLY JUST 9147 05:03:23,720 --> 05:03:24,360 SCRATCHING THE SURFACE. 9148 05:03:24,360 --> 05:03:26,000 THEY'RE REALLY JUST MEANT TO 9149 05:03:26,000 --> 05:03:27,200 POINT OUT THAT THIS IS MORE THAN 9150 05:03:27,200 --> 05:03:28,920 JUST, YOU KNOW, MY KNEES ARE 9151 05:03:28,920 --> 05:03:30,480 SORE BECAUSE I'M GETTING OLD 9152 05:03:30,480 --> 05:03:31,800 KIND OF AGING. 9153 05:03:31,800 --> 05:03:33,320 THERE ARE MANY OTHER THINGS 9154 05:03:33,320 --> 05:03:36,160 GOING ON HERE. 9155 05:03:36,160 --> 05:03:37,000 SO I DON'T HAVE A REAL GOOD 9156 05:03:37,000 --> 05:03:39,880 ANSWER TO HARI, TO ADDRESS HIS 9157 05:03:39,880 --> 05:03:42,000 COMMENT, OTHER THAN TO SAY, YOU 9158 05:03:42,000 --> 05:03:43,480 KNOW, WE NEED TO ANSWER THESE 9159 05:03:43,480 --> 05:03:43,960 QUESTIONS. 9160 05:03:43,960 --> 05:03:47,200 WE NEED TO DO THE RESEARCH. 9161 05:03:47,200 --> 05:03:49,920 >>SO I CAN JUST ADD MY POINT TO 9162 05:03:49,920 --> 05:03:50,440 THAT. 9163 05:03:50,440 --> 05:03:56,680 JOE, YOU MENTIONED THE NEED FOR 9164 05:03:56,680 --> 05:03:58,880 BRINGING GERIATRICS INTO OUR 9165 05:03:58,880 --> 05:03:59,680 FIELD, PROVIDING TRAINING AND 9166 05:03:59,680 --> 05:04:00,720 BRINGING GERIATRICS TO 9167 05:04:00,720 --> 05:04:01,480 INDIVIDUALS WHO ARE CONCERNED 9168 05:04:01,480 --> 05:04:02,320 ABOUT AUTISM. 9169 05:04:02,320 --> 05:04:05,760 ONE OF THE MOST PREVALENT 9170 05:04:05,760 --> 05:04:08,160 THEORIES WITHIN GERIATRICS AND 9171 05:04:08,160 --> 05:04:09,520 GERIATRIC MEDICINE IS CUMULATIVE 9172 05:04:09,520 --> 05:04:10,720 ADVANTAGE AND CUMULATIVE 9173 05:04:10,720 --> 05:04:12,160 DISADVANTAGE THEORY, AND I THINK 9174 05:04:12,160 --> 05:04:13,560 THE IDEA OF COMING INTO 9175 05:04:13,560 --> 05:04:16,160 ADULTHOOD WITH MOVEMENT PROBLEMS 9176 05:04:16,160 --> 05:04:18,600 AND ADL LIMITATIONS, I THINK 9177 05:04:18,600 --> 05:04:20,320 SPEAKS TO THE IDEA OF THE 9178 05:04:20,320 --> 05:04:22,080 POSSIBILITY OF CUMULATIVE 9179 05:04:22,080 --> 05:04:25,120 DISADVANTAGE WHICH ONLY GETS 9180 05:04:25,120 --> 05:04:26,360 MORE CHALLENGING OVER TIME. 9181 05:04:26,360 --> 05:04:27,760 WE HEARD ABOUT INCREASES IN 9182 05:04:27,760 --> 05:04:28,880 PSYCHIATRIC SYMPTOMS, INCREASES 9183 05:04:28,880 --> 05:04:30,920 IN ANXIETY, DECREASES IN 9184 05:04:30,920 --> 05:04:33,040 ADAPTIVE COPING, SHRINKING OF 9185 05:04:33,040 --> 05:04:35,400 NETWORKS, ALL OF THOSE THINGS 9186 05:04:35,400 --> 05:04:37,520 TOGETHER WILL INTERACT. 9187 05:04:37,520 --> 05:04:38,880 AS GERIATRICIANS HAVE SHOWN IN 9188 05:04:38,880 --> 05:04:41,320 THE GENERAL POPULATION, AND EVEN 9189 05:04:41,320 --> 05:04:45,720 MORE SO WITHIN OUR COMMUNITY OF 9190 05:04:45,720 --> 05:04:45,960 AUTISM. 9191 05:04:45,960 --> 05:04:49,000 >>THANK YOU FOR THAT. 9192 05:04:49,000 --> 05:04:51,320 SEEING THAT THERE ARE NO OTHER 9193 05:04:51,320 --> 05:04:54,240 QUESTIONS UP, I TAKE IT BACK. 9194 05:04:54,240 --> 05:04:57,200 JULIE, PLEASE GO AHEAD. 9195 05:04:57,200 --> 05:05:00,160 >>THIS WAS SUCH AN INTERESTING 9196 05:05:00,160 --> 05:05:00,360 PANEL. 9197 05:05:00,360 --> 05:05:01,240 I REALLY APPRECIATED HEARING 9198 05:05:01,240 --> 05:05:02,440 ABOUT THE LIVED EXPERIENCES AND 9199 05:05:02,440 --> 05:05:04,160 ALSO KIND OF SEEING WHERE WE'RE 9200 05:05:04,160 --> 05:05:06,480 AT WITH THE RESEARCH, AND I 9201 05:05:06,480 --> 05:05:08,800 WOULD LOVE TO HEAR -- MAYBE JOE 9202 05:05:08,800 --> 05:05:10,120 IS THE PERSON BEST QUALIFIED TO 9203 05:05:10,120 --> 05:05:12,520 TALK ABOUT THIS. 9204 05:05:12,520 --> 05:05:13,600 SOMETHING I'VE BEEN THINKING 9205 05:05:13,600 --> 05:05:15,200 ABOUT A LOT WHEN YOU'RE THINKING 9206 05:05:15,200 --> 05:05:17,040 ABOUT AGING ISSUES IS HOW DO YOU 9207 05:05:17,040 --> 05:05:18,760 FIND OLDER ADULTS ON THE AUTISM 9208 05:05:18,760 --> 05:05:19,520 SPECTRUM? 9209 05:05:19,520 --> 05:05:23,480 IIF SOMEBODY IS IN THEIR SICK 9210 05:05:23,480 --> 05:05:24,480 TIs NOW, THAT MEANS THEY WERE 9211 05:05:24,480 --> 05:05:25,360 CHILDREN 50 YEARS AGO WHEN 9212 05:05:25,360 --> 05:05:27,640 PEOPLE WEREN'T GET I A LOT OF -- 9213 05:05:27,640 --> 05:05:30,040 WE WEREN'T SEEING AS MANY AUTISM 9214 05:05:30,040 --> 05:05:30,440 DIAGNOSES. 9215 05:05:30,440 --> 05:05:32,120 I WOULD ENVISION BUT I MIGHT BE 9216 05:05:32,120 --> 05:05:33,560 WRONG ABOUT THIS, FINDING 9217 05:05:33,560 --> 05:05:35,880 SAMPLES OF OLDER ADULTS WHO HAVE 9218 05:05:35,880 --> 05:05:38,480 AN AUTISM DIAGNOSIS OR WHO MAYBE 9219 05:05:38,480 --> 05:05:39,480 EVEN IDENTIFY AS BEING ON THE 9220 05:05:39,480 --> 05:05:44,320 AUTISM SPECTRUM MIGHT BE TRICKY. 9221 05:05:44,320 --> 05:05:45,400 40 YEARS FROM NOW, MAYBE NOT SO 9222 05:05:45,400 --> 05:05:47,160 MUCH AS WE'RE SEEING, YOU KNOW, 9223 05:05:47,160 --> 05:05:50,560 PEOPLE GETTING DIAGNOSED MORE 9224 05:05:50,560 --> 05:05:52,080 OFTEN, BUT I'M SORT OF -- I 9225 05:05:52,080 --> 05:05:53,040 HAVEN'T HAD A CHANCE TO TALK 9226 05:05:53,040 --> 05:05:54,160 WITH SOMEBODY ABOUT KIND OF HOW 9227 05:05:54,160 --> 05:05:56,360 THAT WORKS WHEN YOU'RE DOING 9228 05:05:56,360 --> 05:05:57,880 SAMPLES AND RECRUITING OLDER 9229 05:05:57,880 --> 05:05:59,800 ADULT SAMPLES, CAN YOU FIND 9230 05:05:59,800 --> 05:06:01,040 AUTISTIC OLDER ADULTS? 9231 05:06:01,040 --> 05:06:02,000 HOW CHALLENGING WAS THAT FOR 9232 05:06:02,000 --> 05:06:03,360 YOU, JOE, AND WHAT ARE 9233 05:06:03,360 --> 05:06:05,440 RECOMMENDATIONS IN TERMS OF EVEN 9234 05:06:05,440 --> 05:06:08,040 TRYING TO BUILD SAMPLES OF OLDER 9235 05:06:08,040 --> 05:06:09,280 ADULTS WHO WOULD HAVE BEEN LESS 9236 05:06:09,280 --> 05:06:10,680 LIKELY TO GET DIAGNOSES AT LEAST 9237 05:06:10,680 --> 05:06:15,640 WHEN THEY WERE CHILDREN? 9238 05:06:15,640 --> 05:06:16,400 >>WELL, IT'S A HUGE PROBLEM. 9239 05:06:16,400 --> 05:06:17,680 I THINK THERE ARE A NUMBER OF 9240 05:06:17,680 --> 05:06:20,320 KIND OF EASY TO IGNORE 9241 05:06:20,320 --> 05:06:23,000 METHODOLOGIC ISSUES, BUT THIS IS 9242 05:06:23,000 --> 05:06:26,240 ONE OF THEM. 9243 05:06:26,240 --> 05:06:28,840 THERE'S A HUGE ASCERTAINMENT 9244 05:06:28,840 --> 05:06:29,760 BIAS IN ANY STUDY YOU DO AT THIS 9245 05:06:29,760 --> 05:06:30,560 AGE. 9246 05:06:30,560 --> 05:06:32,600 I WENT LOOKING IN NORTH CAROLINA 9247 05:06:32,600 --> 05:06:34,560 FOR FOLKS OVER 60, AND IT TOOK 9248 05:06:34,560 --> 05:06:36,200 ME A COUPLE YEARS, REALLY, TO 9249 05:06:36,200 --> 05:06:40,360 FIND A SMALL GROUP OF 20, AND 9250 05:06:40,360 --> 05:06:42,080 THEY WERE BY AND LARGE THE 9251 05:06:42,080 --> 05:06:43,720 INDIVIDUALS THAT WERE IN 9252 05:06:43,720 --> 05:06:45,480 RESIDENTIAL FACILITIES AND HAD 9253 05:06:45,480 --> 05:06:48,280 GOTTEN DIAGNOSED PROBABLY FOR 9254 05:06:48,280 --> 05:06:49,920 OTHER REASONS VERY YOUNG, AND 9255 05:06:49,920 --> 05:06:50,960 SO, YEAH, I THINK THAT'S GOING 9256 05:06:50,960 --> 05:06:53,560 TO BE A BIG PROBLEM, BUT YOU 9257 05:06:53,560 --> 05:06:55,200 KNOW, WE KNOW, WE KNOW ACTUALLY 9258 05:06:55,200 --> 05:06:57,280 FROM DAVID MANDELL'S PAPER A FEW 9259 05:06:57,280 --> 05:07:00,360 YEARS BACK WHEN HE LOOKED AT A 9260 05:07:00,360 --> 05:07:02,240 PSYCHIATRIC HOSPITAL, A STATE 9261 05:07:02,240 --> 05:07:04,600 HOSPITAL IN PENNSYLVANIA WHERE 9262 05:07:04,600 --> 05:07:07,400 HE SCREENED THE GENERAL 9263 05:07:07,400 --> 05:07:08,600 POPULATION OF THE HOSPITAL FOR 9264 05:07:08,600 --> 05:07:11,760 AUTISM AND FOUND THAT 10% HAD 9265 05:07:11,760 --> 05:07:12,520 AUTISM AND IT HADN'T BEEN 9266 05:07:12,520 --> 05:07:12,840 DETECTED. 9267 05:07:12,840 --> 05:07:16,120 SO I THINK WE CAN JUST ASSUME 9268 05:07:16,120 --> 05:07:18,240 THERE'S JUST DRAMATIC 9269 05:07:18,240 --> 05:07:19,000 UNDERRECOGNITION MISDIAGNOSIS IN 9270 05:07:19,000 --> 05:07:19,520 THIS GROUP. 9271 05:07:19,520 --> 05:07:20,800 SO THAT'S OUR CURRENT PROBLEM, 9272 05:07:20,800 --> 05:07:22,400 IS THAT WE DON'T EVEN KNOW WHERE 9273 05:07:22,400 --> 05:07:27,240 THEY ARE, AND -- BUT THEN OUR 9274 05:07:27,240 --> 05:07:28,720 FUTURE PROBLEM IS THEY'RE COMING 9275 05:07:28,720 --> 05:07:29,760 TOWARDS US. 9276 05:07:29,760 --> 05:07:31,160 IT'S THE PIG IN THE PYTHON, SO 9277 05:07:31,160 --> 05:07:32,480 TO SPEAK. 9278 05:07:32,480 --> 05:07:33,920 HE WITH DON'T HAVE A POPULATION 9279 05:07:33,920 --> 05:07:36,560 TO SORT OF DEVELOP OUR KNOWLEDGE 9280 05:07:36,560 --> 05:07:38,960 BASE ON, BUT WE NEED TO GET 9281 05:07:38,960 --> 05:07:39,200 STARTED. 9282 05:07:39,200 --> 05:07:39,920 I THINK THE OTHER QUESTION THAT 9283 05:07:39,920 --> 05:07:41,000 THIS BRINGS UP IS SORT OF WHAT 9284 05:07:41,000 --> 05:07:45,200 IS OLDER AGE IN AUTISM? 9285 05:07:45,200 --> 05:07:47,640 YOU KNOW, I THINK, YOU KNOW, WE 9286 05:07:47,640 --> 05:07:51,440 DEFINE IT BY A LOT OF DIFFERENT 9287 05:07:51,440 --> 05:07:54,280 THINGS, BUT I THINK FOR THIS 9288 05:07:54,280 --> 05:07:55,080 PROCESS AND THIS KIND OF A 9289 05:07:55,080 --> 05:07:57,680 STUDY, WE CAN'T REALLY JUST 9290 05:07:57,680 --> 05:08:00,520 START WITH 60, 70 AND 9291 05:08:00,520 --> 05:08:00,840 80-YEAR-OLDS. 9292 05:08:00,840 --> 05:08:01,920 WE NEED TO START WITH 40 AND 9293 05:08:01,920 --> 05:08:02,800 50-YEAR-OLDS AND FOLLOW THEM 9294 05:08:02,800 --> 05:08:04,280 FORWARD TO TRY AND GET A HANDLE 9295 05:08:04,280 --> 05:08:07,560 ON THAT. 9296 05:08:07,560 --> 05:08:08,160 >>SPEAKING TO THAT, JOE, OF 9297 05:08:08,160 --> 05:08:09,880 COURSE, ARE THE GRAPHS THAT -- 9298 05:08:09,880 --> 05:08:16,040 THE NON-LINEAR GRAPHS THAT SHOW 9299 05:08:16,040 --> 05:08:19,440 DECLINE IN -- DECLINE IN DAILY 9300 05:08:19,440 --> 05:08:21,400 FUNCTIONING THAT BEGINS DECADES 9301 05:08:21,400 --> 05:08:22,960 EARLIER THAN 70. 9302 05:08:22,960 --> 05:08:24,280 SO I THINK THAT ALSO BACKS UP 9303 05:08:24,280 --> 05:08:25,880 THAT NOTION THAT WE REALLY NEED 9304 05:08:25,880 --> 05:08:31,120 TO APPROACH FROM A RESEARCH 9305 05:08:31,120 --> 05:08:31,720 PERSPECTIVE, ANYWAY, AS YOU 9306 05:08:31,720 --> 05:08:32,920 MENTIONED, WE NEED TO APPROACH 9307 05:08:32,920 --> 05:08:34,400 THIS FROM A SLIGHTLY EARLIER 9308 05:08:34,400 --> 05:08:37,000 TIME FRAME BUT ALSO LONGITUDINAL 9309 05:08:37,000 --> 05:08:38,480 TIME FRAME TO BE ABLE TO FOLLOW 9310 05:08:38,480 --> 05:08:39,160 INDIVIDUALS OVER TIME. 9311 05:08:39,160 --> 05:08:40,360 I ALSO LIKE THAT YOU POINTED OUT 9312 05:08:40,360 --> 05:08:41,760 THAT THAT DOESN'T MEAN WE DON'T 9313 05:08:41,760 --> 05:08:44,000 NEED RESEARCH -- THAT CAN IMPACT 9314 05:08:44,000 --> 05:08:45,600 PEOPLE NOW THAT WON'T TAKE THOSE 9315 05:08:45,600 --> 05:08:47,640 DECADES, SO I THINK BOTH THOSE 9316 05:08:47,640 --> 05:08:48,440 POINTS ARE WELL TAKEN. 9317 05:08:48,440 --> 05:08:49,640 WE HAVE TWO MORE PEOPLE WITH 9318 05:08:49,640 --> 05:08:51,480 RAISED HANDS AND THEN I THINK 9319 05:08:51,480 --> 05:08:54,240 WE'LL PROBABLY BE WISE TO MOVE 9320 05:08:54,240 --> 05:08:56,880 ON. 9321 05:08:56,880 --> 05:08:59,280 SO WHAT I WOULD SAY IF ANYONE 9322 05:08:59,280 --> 05:09:01,040 ELSE HAS ANY COMMENTS OR 9323 05:09:01,040 --> 05:09:02,320 QUESTIONS, PLEASE RAISE YOUR 9324 05:09:02,320 --> 05:09:03,120 HANDS NOW SO WE CAN BUDGET THE 9325 05:09:03,120 --> 05:09:04,720 TIME ACCORDINGLY BUT IN THE 9326 05:09:04,720 --> 05:09:06,840 MEANTIME, DENA, WHY DON'T YOU GO 9327 05:09:06,840 --> 05:09:07,040 AHEAD. 9328 05:09:07,040 --> 05:09:10,560 >>I'M GOING TO FIRST DEFER TO 9329 05:09:10,560 --> 05:09:15,120 JOHN, BECAUSE HE HAS A COMMENT, 9330 05:09:15,120 --> 05:09:17,600 BUT I WOULD SAY TOO, I THINK THE 9331 05:09:17,600 --> 05:09:18,360 SCIENTIFIC COMMUNITY IS REALLY 9332 05:09:18,360 --> 05:09:20,120 WEAK ABOUT USING GATE KEEPERS, 9333 05:09:20,120 --> 05:09:23,960 YOU KNOW, WE HAD -- I HAD A 9334 05:09:23,960 --> 05:09:25,680 WOMEN'S SUPPORT GROUP LAST 9335 05:09:25,680 --> 05:09:26,560 NIGHT, 22 ATTENDEES. 9336 05:09:26,560 --> 05:09:29,160 EIGHT OF THEM WERE AT LEAST OVER 9337 05:09:29,160 --> 05:09:29,320 45. 9338 05:09:29,320 --> 05:09:30,680 AND I THINK IF YOU START LOOKING 9339 05:09:30,680 --> 05:09:31,840 AT THE AUTISTIC LEADERSHIP, 9340 05:09:31,840 --> 05:09:33,720 WE'LL BE ABLE TO FIND YOU AS BIG 9341 05:09:33,720 --> 05:09:36,160 A SAMPLE AS YOU WANT. 9342 05:09:36,160 --> 05:09:36,960 >>THAT'S A GOOD POINT, REACHING 9343 05:09:36,960 --> 05:09:39,280 OUT TO THOSE -- TO OUR 9344 05:09:39,280 --> 05:09:40,920 COMMUNITY-BASED ORGANIZATIONS. 9345 05:09:40,920 --> 05:09:42,120 I'M SORRY, I DON'T HAVE JOHN'S 9346 05:09:42,120 --> 05:09:43,760 HAND UP, BUT JOHN, DID YOU WANT 9347 05:09:43,760 --> 05:09:45,120 TO MAKE A POINT? 9348 05:09:45,120 --> 05:09:46,920 >>UM, YES, I DID. 9349 05:09:46,920 --> 05:09:47,800 >>OKAY. 9350 05:09:47,800 --> 05:09:51,880 GO AHEAD. 9351 05:09:51,880 --> 05:09:53,040 I CAN HEAR YOU. 9352 05:09:53,040 --> 05:09:53,280 >>OKAY. 9353 05:09:53,280 --> 05:09:54,960 SO LOOKING AT THE SLIDES THAT 9354 05:09:54,960 --> 05:09:57,680 THE SCIENTISTS PUT UP, THEY 9355 05:09:57,680 --> 05:10:02,200 TALKED ABOUT MORTALITY NOT BEING 9356 05:10:02,200 --> 05:10:03,280 DIFFERENT FOR PEOPLE WITH OR 9357 05:10:03,280 --> 05:10:04,240 WITHOUT INTELLECTUAL DISABILITY, 9358 05:10:04,240 --> 05:10:05,480 FOR EXAMPLE, JOE TALKING ABOUT 9359 05:10:05,480 --> 05:10:10,600 HOW HARD IT WAS TO FIND 9360 05:10:10,600 --> 05:10:11,280 60-YEAR-OLD PEOPLE, AND MOST OF 9361 05:10:11,280 --> 05:10:17,160 THEM WERE INSTITUTIONALIZED. 9362 05:10:17,160 --> 05:10:20,440 NOW I AM -- I PUBLISHED A 9363 05:10:20,440 --> 05:10:22,400 COMMENTARY IN "AUTISM" A FEW 9364 05:10:22,400 --> 05:10:23,400 YEARS AGO TALKING ABOUT EXACTLY 9365 05:10:23,400 --> 05:10:27,240 THAT TOPIC THAT THE VAST 9366 05:10:27,240 --> 05:10:29,320 MAJORITY OF AUTISTIC PEOPLE WHO 9367 05:10:29,320 --> 05:10:33,480 WERE ALIVE 60 YEARS AGO HAVE 9368 05:10:33,480 --> 05:10:34,560 NEVER BEEN DIAGNOSED, AND THEY 9369 05:10:34,560 --> 05:10:35,840 ARE INVISIBLE. 9370 05:10:35,840 --> 05:10:40,080 THEY'RE JUST PART OF THE SYSTEM. 9371 05:10:40,080 --> 05:10:43,480 SO THEY'RE NOT OUT THERE TO BE 9372 05:10:43,480 --> 05:10:43,800 FOUND. 9373 05:10:43,800 --> 05:10:45,240 IF I LOOK AT MY EXPERIENCE AT 9374 05:10:45,240 --> 05:10:53,000 THE LAB, AND I CAN'T GIVE YOU A 9375 05:10:53,000 --> 05:10:55,080 SPECIFIC NUMBER, BUT IF YOU JUST 9376 05:10:55,080 --> 05:10:57,040 REASON WITH ME AND YOU IMAGINE 9377 05:10:57,040 --> 05:10:58,960 THAT LAB IS FULL OF A LOT OF 9378 05:10:58,960 --> 05:11:00,240 BRILLIANT GEEKS WHO HAVE A LOT 9379 05:11:00,240 --> 05:11:02,880 OF TRAITS OF NEURODIVERSITY. 9380 05:11:02,880 --> 05:11:06,840 IF THE LIFE EXPECTANCY OF 9381 05:11:06,840 --> 05:11:08,240 SEPARATE SCIENTISTS AT THE 9382 05:11:08,240 --> 05:11:09,800 LIVERMORE LAB WAS 20 YEARS LESS 9383 05:11:09,800 --> 05:11:13,720 THAN THE LIFESPAN OF THE GENERAL 9384 05:11:13,720 --> 05:11:14,320 POPULATION, BELIEVE ME, YOU'D 9385 05:11:14,320 --> 05:11:14,680 HEAR ABOUT IT. 9386 05:11:14,680 --> 05:11:17,920 AND I THINK THAT THAT'S TRUE IN 9387 05:11:17,920 --> 05:11:24,560 OTHER PLACES WHERE YOU HAVE 9388 05:11:24,560 --> 05:11:25,000 LARGE NEURODIVERGENT 9389 05:11:25,000 --> 05:11:25,320 POPULATIONS. 9390 05:11:25,320 --> 05:11:28,000 SO I DON'T THINK THAT IT'S 9391 05:11:28,000 --> 05:11:31,800 LIKELY THAT FOLKS -- MANY CH US 9392 05:11:31,800 --> 05:11:33,360 FOLKS DIE THAT EARLY. 9393 05:11:33,360 --> 05:11:34,560 BUT I THINK IT'S VERY 9394 05:11:34,560 --> 05:11:38,160 SIGNIFICANT, FOR EXAMPLE, THAT 9395 05:11:38,160 --> 05:11:39,360 YOU FOUND SUCH A HIGHER 9396 05:11:39,360 --> 05:11:41,120 INCIDENCE OF PARKINSON'S. 9397 05:11:41,120 --> 05:11:43,760 AND I COMMENTED MYSELF ON 9398 05:11:43,760 --> 05:11:44,720 TREMORS INCREASING WITH AGE. 9399 05:11:44,720 --> 05:11:46,160 I THINK IT'S VERY SIGNIFICANT 9400 05:11:46,160 --> 05:11:47,680 THAT EVERY SINGLE PERSON WHO 9401 05:11:47,680 --> 05:11:50,320 SPOKE WITH ME ON LIVED 9402 05:11:50,320 --> 05:11:51,960 EXPERIENCE TALKED ABOUT ANXIETY. 9403 05:11:51,960 --> 05:11:56,600 I THINK WE DEFINITELY KNOW SOME 9404 05:11:56,600 --> 05:11:58,240 OF THE -- SOME THINGS ARE 9405 05:11:58,240 --> 05:12:00,080 PROBLEMS, SOME THINGS ARE VERY 9406 05:12:00,080 --> 05:12:03,040 LIKELY PROBLEMS. 9407 05:12:03,040 --> 05:12:04,200 I DON'T KNOW HOW YOU'RE EVER 9408 05:12:04,200 --> 05:12:07,400 GOING TO GO OUT AND ASSEMBLE A 9409 05:12:07,400 --> 05:12:11,240 COHORT OF 60-SOMETHING 9410 05:12:11,240 --> 05:12:12,360 INDIVIDUALS. 9411 05:12:12,360 --> 05:12:13,880 LIKE ME, WITH ME BEING A PERSON 9412 05:12:13,880 --> 05:12:16,280 WHO WAS NOT DIAGNOSED IN EARLY 9413 05:12:16,280 --> 05:12:18,040 CHILDHOOD, AND PROBABLY GREW TO 9414 05:12:18,040 --> 05:12:19,040 ADULTHOOD WITHOUT A DIAGNOSIS. 9415 05:12:19,040 --> 05:12:21,960 I THINK THAT'S A REALLY HARD 9416 05:12:21,960 --> 05:12:22,320 PROBLEM. 9417 05:12:22,320 --> 05:12:23,720 AND WE SPOKE ABOUT THAT SEVERAL 9418 05:12:23,720 --> 05:12:25,920 YEARS AGO. 9419 05:12:25,920 --> 05:12:28,240 AND I WOULD JUST MAKE PEOPLE 9420 05:12:28,240 --> 05:12:31,880 AWARE THAT THIS ISN'T A MATTER 9421 05:12:31,880 --> 05:12:33,360 OF JUST FUND AGO STUDY AND GOING 9422 05:12:33,360 --> 05:12:36,240 OUT LOOKING FOR THOSE 9423 05:12:36,240 --> 05:12:37,680 65-YEAR-OLD AUTISTICS BECAUSE 9424 05:12:37,680 --> 05:12:39,000 MOST PEOPLE WHO DID NOT GET 9425 05:12:39,000 --> 05:12:40,720 DIAGNOSED ARE NOT GOING TO JUST 9426 05:12:40,720 --> 05:12:43,440 COME OUT AND BECOME DIAGNOSED 9427 05:12:43,440 --> 05:12:44,720 TODAY BECAUSE WE WANT TO DO A 9428 05:12:44,720 --> 05:12:45,040 STUDY. 9429 05:12:45,040 --> 05:12:48,320 THAT'S A REALLY MAJOR BARRIER TO 9430 05:12:48,320 --> 05:12:50,520 RESEARCHING THIS. 9431 05:12:50,520 --> 05:12:51,880 >>THANKS, JOHN. 9432 05:12:51,880 --> 05:12:53,480 APPRECIATE IT. 9433 05:12:53,480 --> 05:13:00,400 THEN SCOTT.TH JALYNN NEXT AN%- 9434 05:13:00,400 --> 05:13:09,560 >>THANK YOU. 9435 05:13:09,560 --> 05:13:11,000 I APPRECIATE SO MUCH THE 9436 05:13:11,000 --> 05:13:11,560 RESEARCH THAT YOU HAVE DONE. 9437 05:13:11,560 --> 05:13:13,040 WE STARTED LOOKING AT LIFESPAN 9438 05:13:13,040 --> 05:13:14,600 ISSUES AS THE FIRST ORGANIZATION 9439 05:13:14,600 --> 05:13:16,800 IN THE COUNTRY JUST DEDICATED TO 9440 05:13:16,800 --> 05:13:18,640 THAT, AND WHEN WE FIRST STARTED 9441 05:13:18,640 --> 05:13:21,840 TRYING TO DO A LITERATURE SEARCH 9442 05:13:21,840 --> 05:13:26,320 FOR ANYTHING ABOVE 50 WAS ALMOST 9443 05:13:26,320 --> 05:13:26,640 IMPOSSIBLE. 9444 05:13:26,640 --> 05:13:29,960 AND TO SEE THAT YOU'RE TAKING 9445 05:13:29,960 --> 05:13:31,280 THIS VERY SERIOUSLY AND LOOKING 9446 05:13:31,280 --> 05:13:33,120 AT IT IN DEPTH AND SEEING WHAT 9447 05:13:33,120 --> 05:13:37,840 ELSE NEEDS TO BE DONE IS TO BE 9448 05:13:37,840 --> 05:13:38,560 APPLAUDED. 9449 05:13:38,560 --> 05:13:39,240 I'VE SEEN SOME INTERESTING 9450 05:13:39,240 --> 05:13:42,120 THINGS WITH THE GROUPS THAT I 9451 05:13:42,120 --> 05:13:42,440 MONITOR. 9452 05:13:42,440 --> 05:13:44,960 ONE WEEK, THIS WAS A FEW MONTHS 9453 05:13:44,960 --> 05:13:46,760 BACK, THERE WERE 28 INDIVIDUALS 9454 05:13:46,760 --> 05:13:50,320 ON THE SITES THAT I'M ON THAT 9455 05:13:50,320 --> 05:13:51,560 HAD BROUGHT THEIR STORIES 9456 05:13:51,560 --> 05:13:54,240 FORWARD ABOUT BEING OVER THE AGE 9457 05:13:54,240 --> 05:13:57,680 OF 35 AND BEING DIAGNOSED ON THE 9458 05:13:57,680 --> 05:13:58,600 AUTISM SPECTRUM JUST WITHIN 9459 05:13:58,600 --> 05:14:01,200 RECENT MONTHS. 9460 05:14:01,200 --> 05:14:02,480 SO THERE'S A LARGE COHORT THAT 9461 05:14:02,480 --> 05:14:07,120 WE'RE SEEING WITH THE SITES THAT 9462 05:14:07,120 --> 05:14:08,320 WE ARE LOOKING AT, AND AGAIN, 9463 05:14:08,320 --> 05:14:10,160 IT'S NOT THE PEOPLE THAT WERE 9464 05:14:10,160 --> 05:14:11,520 DIAGNOSED AS CHILDREN, BUT 9465 05:14:11,520 --> 05:14:12,880 THEY'RE COMING UP AND THEY'RE 9466 05:14:12,880 --> 05:14:14,480 GOING TO BE HAVING THE PROBLEMS, 9467 05:14:14,480 --> 05:14:15,560 THEY'RE GOING TO BE HAVING MANY 9468 05:14:15,560 --> 05:14:19,000 OF THE SAME TYPES OF PROBLEMS, 9469 05:14:19,000 --> 05:14:21,200 AND IT IS SOMETHING THAT HAS A 9470 05:14:21,200 --> 05:14:21,960 MUCH GREATER NUMBER THAN WE'RE 9471 05:14:21,960 --> 05:14:24,040 ABLE TO IDENTIFY. 9472 05:14:24,040 --> 05:14:28,000 IT'S INTERESTING THAT YOU HAD 9473 05:14:28,000 --> 05:14:31,280 MENTIONED THE FIRST AUTISTIC 9474 05:14:31,280 --> 05:14:33,760 MAN, DONALD TRIPLETT, I WAS 9475 05:14:33,760 --> 05:14:36,080 GOING TO BRING IT IN LATER BUT 9476 05:14:36,080 --> 05:14:36,680 SINCE SOME OF THE GUESTS ARE 9477 05:14:36,680 --> 05:14:37,080 HERE. 9478 05:14:37,080 --> 05:14:38,600 THE BOOK "IN A DIFFERENT KEY" 9479 05:14:38,600 --> 05:14:40,560 WAS WRITTEN INITIALLY ABOUT HIM, 9480 05:14:40,560 --> 05:14:41,640 AND THERE IS A MOVIE ABOUT THE 9481 05:14:41,640 --> 05:14:43,400 FIRST AUTISTIC MAN, AND IT'S 9482 05:14:43,400 --> 05:14:46,360 GOING TO BE ON PBS. 9483 05:14:46,360 --> 05:14:53,000 IT WAS DONE BY JOHN DONOVAN AND 9484 05:14:53,000 --> 05:14:55,920 KAREN ZUCKER, DECEMBER 13TH AT 9485 05:14:55,920 --> 05:14:58,840 9:00 P.M. ON PBS EASTERN 9486 05:14:58,840 --> 05:15:00,120 STANDARD TIME, AND THAT MAY GIVE 9487 05:15:00,120 --> 05:15:03,400 A LITTLE BIT MORE OF A CONTEXT 9488 05:15:03,400 --> 05:15:06,320 TO THE CHALLENGE OF WHAT WE'VE 9489 05:15:06,320 --> 05:15:09,640 BEEN FACING SINCE THE FIRST 9490 05:15:09,640 --> 05:15:13,800 OFFICIAL DIAGNOSIS OF AUTISM AND 9491 05:15:13,800 --> 05:15:16,960 THE INDIVIDUAL THAT THE STORY IS 9492 05:15:16,960 --> 05:15:17,400 CENTERED ON. 9493 05:15:17,400 --> 05:15:18,840 I THINK YOU'LL FIND IT VERY, 9494 05:15:18,840 --> 05:15:20,280 VERY INTERESTING. 9495 05:15:20,280 --> 05:15:20,960 AND AGAIN, THANK YOU VERY MUCH 9496 05:15:20,960 --> 05:15:23,560 FOR DOING THIS RESEARCH AND I 9497 05:15:23,560 --> 05:15:24,560 WOULD LOVE TO WORK WITH YOU IN 9498 05:15:24,560 --> 05:15:25,880 WHATEVER WAY I COULD PERHAPS BE 9499 05:15:25,880 --> 05:15:31,040 OF HELP. 9500 05:15:31,040 --> 05:15:35,080 >>THANK YOU, JALYNN. 9501 05:15:35,080 --> 05:15:37,480 FINALLY, SCOTT ROBINSON. 9502 05:15:37,480 --> 05:15:38,680 >>THANKS, DR. GORDON. 9503 05:15:38,680 --> 05:15:40,560 I'LL TRY TO KEEP IT BRIEF 9504 05:15:40,560 --> 05:15:42,520 BECAUSE I KNOW WE'RE RUNNING 9505 05:15:42,520 --> 05:15:47,120 SHORT ON TIME. 9506 05:15:47,120 --> 05:15:48,480 WHAT I WANTED TO EMPHASIZE IS 9507 05:15:48,480 --> 05:15:49,760 MAYBE WE COULD LOOK TO, FOR 9508 05:15:49,760 --> 05:15:51,680 INSTANCE, THE STATES AT TIMES 9509 05:15:51,680 --> 05:15:52,240 FOR COLLABORATION KIND OF ON 9510 05:15:52,240 --> 05:15:52,440 THIS. 9511 05:15:52,440 --> 05:15:54,040 I KNOW THAT IN PENNSYLVANIA, FOR 9512 05:15:54,040 --> 05:15:57,160 INSTANCE, SOME OF MY COLLEAGUES 9513 05:15:57,160 --> 05:15:58,800 THERE HAD JUST ACCIDENTALLY 9514 05:15:58,800 --> 05:16:00,240 ENCOUNTERED LIKE AUTISTIC ADULTS 9515 05:16:00,240 --> 05:16:03,520 WHO ARE OLDER IN DIFFERENT 9516 05:16:03,520 --> 05:16:06,080 FACILITIES, ET CETERA, AND IT 9517 05:16:06,080 --> 05:16:08,080 WAS LIKE BEING BROUGHT UP TODAY 9518 05:16:08,080 --> 05:16:09,880 THAT FOLKS WERE NEVER BEING 9519 05:16:09,880 --> 05:16:10,760 DIAGNOSE AND JUST BY 9520 05:16:10,760 --> 05:16:11,200 HAPPENSTANCE. 9521 05:16:11,200 --> 05:16:12,720 SO I THINK WE JUST HAVE TO 9522 05:16:12,720 --> 05:16:15,360 CONSIDER ALL DIFFERENT TYPES OF 9523 05:16:15,360 --> 05:16:17,280 CONNECTIONS ON THIS AS FAR AS AT 9524 05:16:17,280 --> 05:16:18,720 THE STATE AND LOCAL LEVEL, AND 9525 05:16:18,720 --> 05:16:21,840 MAYBE THIS SPEAKS TO ALSO 9526 05:16:21,840 --> 05:16:22,720 INTERAGENCY FOCUS. 9527 05:16:22,720 --> 05:16:24,160 THIS IS PRIMARY, THE FOCUS, FOR 9528 05:16:24,160 --> 05:16:26,200 INSTANCE, FOR ACL, BUT I THINK 9529 05:16:26,200 --> 05:16:28,040 MAYBE SOME OF US, THE REST OF 9530 05:16:28,040 --> 05:16:29,400 THE AGENCIES COULD BE 9531 05:16:29,400 --> 05:16:32,160 COLLABORATING ON THIS AS FAR AS 9532 05:16:32,160 --> 05:16:34,320 THE ECONOMIC FACETS, THE HOUSING 9533 05:16:34,320 --> 05:16:35,800 FACETS, HOW THAT CHANGES AS 9534 05:16:35,800 --> 05:16:36,840 FOLKS AGE. 9535 05:16:36,840 --> 05:16:38,840 SO -- BUT THIS IS VERY 9536 05:16:38,840 --> 05:16:40,480 ENLIGHTENING AS FAR AS THANK YOU 9537 05:16:40,480 --> 05:16:42,680 FOR SHEDDING A LIGHT ON THE 9538 05:16:42,680 --> 05:16:44,480 RESEARCH AND THE DATA IN THIS 9539 05:16:44,480 --> 05:16:47,440 SPACE IS VERY HELPFUL. 9540 05:16:47,440 --> 05:16:49,160 >>WONDERFUL. 9541 05:16:49,160 --> 05:16:49,560 THANK YOU, SCOTT. 9542 05:16:49,560 --> 05:16:51,720 SEEING NO OTHER HANDS UP, I 9543 05:16:51,720 --> 05:16:54,480 THINK WE CAN MOVE ON TO THE 9544 05:16:54,480 --> 05:16:57,640 FINAL ITEM ON OUR AGENDA TODAY, 9545 05:16:57,640 --> 05:16:59,320 WHICH IS ROUND ROBIN UPDATES. 9546 05:16:59,320 --> 05:17:02,480 SUE SARNTIONSUSAN, I'LL LET YOUS 9547 05:17:02,480 --> 05:17:02,880 PART OF IT. 9548 05:17:02,880 --> 05:17:03,600 >>THANK YOU. 9549 05:17:03,600 --> 05:17:06,560 YES, WE ARE OPEN FOR ROUND ROBIN 9550 05:17:06,560 --> 05:17:06,800 UPDATES. 9551 05:17:06,800 --> 05:17:09,520 I BELIEVE ALICE HAD AN 9552 05:17:09,520 --> 05:17:11,480 ANNOUNCEMENT ABOUT THE ACES, IF 9553 05:17:11,480 --> 05:17:13,360 SHE IS ON THE CALL. 9554 05:17:13,360 --> 05:17:14,920 >>YES, I'M ON. 9555 05:17:14,920 --> 05:17:15,280 CAN YOU HEAR ME? 9556 05:17:15,280 --> 05:17:15,880 >>YES. 9557 05:17:15,880 --> 05:17:18,000 >>GOOD. 9558 05:17:18,000 --> 05:17:20,520 I'M ALICE FROM NICHD. 9559 05:17:20,520 --> 05:17:22,000 I WOULD LIKE TO SHARE SOME 9560 05:17:22,000 --> 05:17:24,280 EXCITING NEWS ABOUT THE NIH 9561 05:17:24,280 --> 05:17:26,800 AUTISM CENTERS OF EXCELLENCE 9562 05:17:26,800 --> 05:17:28,040 PROGRAM. 9563 05:17:28,040 --> 05:17:31,400 NIH HAS JUST AWARDED NINE ACES 9564 05:17:31,400 --> 05:17:35,000 TO SUPPORT A LARGE SCALE 9565 05:17:35,000 --> 05:17:36,440 RESEARCH ON A RANGE OF RESEARCH 9566 05:17:36,440 --> 05:17:37,800 TOPICS. 9567 05:17:37,800 --> 05:17:40,200 THE ACE PROGRAM WAS ESTABLISHED 9568 05:17:40,200 --> 05:17:47,440 IN 2007 BY NICHD, NIMH, NINDS, 9569 05:17:47,440 --> 05:17:48,000 NIDCD AND NIEHS. 9570 05:17:48,000 --> 05:17:51,800 SO THIS IS THE FOURTH ITERATION 9571 05:17:51,800 --> 05:17:52,360 OF THE PROGRAM. 9572 05:17:52,360 --> 05:17:55,800 IN THIS ROUND OF COMPETITION, 9573 05:17:55,800 --> 05:17:57,440 EACH APPLICATION MUST INCLUDE A 9574 05:17:57,440 --> 05:18:02,480 PLAN FOR ENHANCING DIVERSE 9575 05:18:02,480 --> 05:18:03,120 PERSPECTIVE, COMMUNITY 9576 05:18:03,120 --> 05:18:07,960 ENGAGEMENT IS ALSO A KEY, CORE 9577 05:18:07,960 --> 05:18:08,960 FEATURE OF THE ACE PROGRAM. 9578 05:18:08,960 --> 05:18:10,520 EACH ACE WILL HAVE AN EXTERNAL 9579 05:18:10,520 --> 05:18:15,640 ADVISORY COMMITTEE THAT INCLUDES 9580 05:18:15,640 --> 05:18:16,960 INDIVIDUALS WITH AUTISM AND 9581 05:18:16,960 --> 05:18:18,120 PARENTS OF INDIVIDUALS WITH 9582 05:18:18,120 --> 05:18:19,760 AUTISM AS MEMBERS. 9583 05:18:19,760 --> 05:18:23,880 HALF OF THE COHORT OF THESE 9584 05:18:23,880 --> 05:18:25,880 GRANTEES ARE NEW TO THE ACE 9585 05:18:25,880 --> 05:18:27,120 PROGRAM. 9586 05:18:27,120 --> 05:18:30,080 AND THE RESEARCH AIMS OF THESE 9587 05:18:30,080 --> 05:18:32,720 NEWLY FUNDED ACE WILL ADDRESS 9588 05:18:32,720 --> 05:18:36,760 MANY GAPS IN AUTISM RESEARCH AS 9589 05:18:36,760 --> 05:18:40,520 IDENTIFIED IN THE IACC STRATEGIC 9590 05:18:40,520 --> 05:18:40,760 PLAN. 9591 05:18:40,760 --> 05:18:44,120 I WILL NOW MENTION THREE NEW 9592 05:18:44,120 --> 05:18:46,480 ACES HERE, CONSIDERING THE 9593 05:18:46,480 --> 05:18:47,560 DISCUSSION AND PRESENTATION IN 9594 05:18:47,560 --> 05:18:50,400 THIS MEETING. 9595 05:18:50,400 --> 05:18:54,840 FIRST THE NEW ACE AT UNIVERSITY 9596 05:18:54,840 --> 05:18:57,080 OF WISCONSIN-MADISON WILL ENROLL 9597 05:18:57,080 --> 05:18:58,080 A LARGE SAMPLE OF MALE AND 9598 05:18:58,080 --> 05:19:00,800 FEMALE ADULTS WITH AND WITHOUT 9599 05:19:00,800 --> 05:19:04,120 AUTISM TO EXAMINE HOW AGING 9600 05:19:04,120 --> 05:19:06,840 RELATED DIFFERENCES MAY 9601 05:19:06,840 --> 05:19:10,800 CONTRIBUTE TO DIFFERENT HEALTH 9602 05:19:10,800 --> 05:19:11,960 OUTCOMES. 9603 05:19:11,960 --> 05:19:13,560 SECOND, THE NEW ACE AT 9604 05:19:13,560 --> 05:19:16,520 UNIVERSITY OF PIT BURG WILL 9605 05:19:16,520 --> 05:19:18,600 EXAMINE EMOTIONAL AND MENTAL 9606 05:19:18,600 --> 05:19:22,200 HEALTH IN AUTISM ADULTS. 9607 05:19:22,200 --> 05:19:25,200 THE RESEARCH TEAM WILL EXAMINE 9608 05:19:25,200 --> 05:19:28,920 PREDICTORS OF SUICIDALITY AND 9609 05:19:28,920 --> 05:19:34,280 VALIDATE A SUICIDE SELF-REPORT 9610 05:19:34,280 --> 05:19:35,400 MEASURE. 9611 05:19:35,400 --> 05:19:39,720 AND THE NEW ACE AT DREXEL 9612 05:19:39,720 --> 05:19:40,360 UNIVERSITY WILL USE A PUBLIC 9613 05:19:40,360 --> 05:19:42,320 HEALTH FRAMEWORK TO STUDY HEALTH 9614 05:19:42,320 --> 05:19:43,200 DETERMINANTS, HEALTH INEQUITY 9615 05:19:43,200 --> 05:19:46,600 AND HEALTH SERVICES DELIVERY AND 9616 05:19:46,600 --> 05:19:48,480 THEIR IMPACT ON HEALTH OUTCOME 9617 05:19:48,480 --> 05:19:50,760 ACROSS THE LIFESPAN. 9618 05:19:50,760 --> 05:19:51,080 IN THOSE 9619 05:19:51,080 --> 05:19:54,840 WITH AUTISM. 9620 05:19:54,840 --> 05:20:00,160 WE WILL POST MORE INFORMATION AT 9621 05:20:00,160 --> 05:20:01,160 THE IACC WEBSITE. 9622 05:20:01,160 --> 05:20:03,880 >>THANK YOU SO MUCH, ALICE, FOR 9623 05:20:03,880 --> 05:20:05,400 THAT TIMELY UPDATE. 9624 05:20:05,400 --> 05:20:06,600 AND WE LOOK FORWARD TO HEARING 9625 05:20:06,600 --> 05:20:07,920 MORE ABOUT THE ACES AND PROBABLY 9626 05:20:07,920 --> 05:20:10,120 WILL SHARE HERE AT IACC ABOUT 9627 05:20:10,120 --> 05:20:15,400 THEM IN THE FUTURE. 9628 05:20:15,400 --> 05:20:16,000 >>YES. 9629 05:20:16,000 --> 05:20:17,800 >>LARRY WEXLER, DO YOU HAVE AN 9630 05:20:17,800 --> 05:20:18,160 UPDATE FOR US? 9631 05:20:18,160 --> 05:20:19,120 >>I DO. 9632 05:20:19,120 --> 05:20:19,920 THANK YOU, SUSAN. 9633 05:20:19,920 --> 05:20:23,760 GOOD LATE AFTERNOON TO EVERYONE. 9634 05:20:23,760 --> 05:20:27,480 I MANAGE THE DEPARTMENT OF 9635 05:20:27,480 --> 05:20:30,040 EDUCATION'S OFFICE OF SPECIAL 9636 05:20:30,040 --> 05:20:32,480 EDUCATION'S DISCRETIONARY GRANTS 9637 05:20:32,480 --> 05:20:32,880 PROGRAM. 9638 05:20:32,880 --> 05:20:37,360 SO I MANAGE A PRETTY -- A FAIRLY 9639 05:20:37,360 --> 05:20:39,800 LARGE PORTFOLIO OF GRANTS. 9640 05:20:39,800 --> 05:20:42,160 WE MADE A NUMBER OF PERSONAL 9641 05:20:42,160 --> 05:20:43,840 PREPARATION GRANTS THAT ARE 9642 05:20:43,840 --> 05:20:46,120 FOCUSED ON DOCTORAL TRAINING AND 9643 05:20:46,120 --> 05:20:49,440 MASTERS LEVEL TRAINING AROUND 9644 05:20:49,440 --> 05:20:50,640 AUTISM, BUT WHAT I WANTED TO 9645 05:20:50,640 --> 05:20:56,600 SHARE WITH YOU WAS A 9646 05:20:56,600 --> 05:20:58,240 NON-AUTISTIC FOCUSED GRANT. 9647 05:20:58,240 --> 05:21:01,400 IT CALLED THE RHONDA WEISS DATA 9648 05:21:01,400 --> 05:21:02,680 ACCESSIBILITY CENTER, AND IT'S 9649 05:21:02,680 --> 05:21:04,480 ONE WE'RE REALLY EXCITED ABOUT. 9650 05:21:04,480 --> 05:21:09,160 AND I THINK IT WILL, IN FACT, 9651 05:21:09,160 --> 05:21:10,680 AFFECT -- ITS FOCUSED ON BLIND 9652 05:21:10,680 --> 05:21:12,480 AND VISUALLY IMPAIRED, BUT WE 9653 05:21:12,480 --> 05:21:18,320 HAVE FOUND THAT MANY OF OUR 9654 05:21:18,320 --> 05:21:21,680 ACCESS PROJECTS RELATE TO PEOPLE 9655 05:21:21,680 --> 05:21:25,560 WITH ALL SORTS OF PERCEPTUAL 9656 05:21:25,560 --> 05:21:26,760 DISABILITIES AND, I MEAN, WE'RE 9657 05:21:26,760 --> 05:21:28,360 THE PEOPLE THAT BROUGHT YOU 9658 05:21:28,360 --> 05:21:30,240 CLOSED CAPTIONING, WHICH IS USED 9659 05:21:30,240 --> 05:21:33,800 A HECK OF A LOT MORE BY PEOPLE 9660 05:21:33,800 --> 05:21:36,280 WATCHING NETFLIX NOW THAN BY 9661 05:21:36,280 --> 05:21:38,680 PEOPLE WHO ARE DEAF. 9662 05:21:38,680 --> 05:21:42,640 SO THIS CENTER, THE ISSUE WE HAD 9663 05:21:42,640 --> 05:21:45,440 IS THAT OUR DATA ARE POSTED 9664 05:21:45,440 --> 05:21:46,160 PUBLICLY. 9665 05:21:46,160 --> 05:21:48,920 I OVERSEE THE DATA FOR 7 MILLION 9666 05:21:48,920 --> 05:21:50,880 CHILDREN WITH DISABILITIES IN 9667 05:21:50,880 --> 05:21:52,920 THE UNITED STATES, AND ANYONE IN 9668 05:21:52,920 --> 05:21:56,520 THE PUBLIC CONSIDER DOWNLOAD 9669 05:21:56,520 --> 05:21:59,040 THOSE DATA INTO WHATEVER FORMAT 9670 05:21:59,040 --> 05:21:59,840 THEY WANT AND THEN THEY CAN 9671 05:21:59,840 --> 05:22:02,000 MANIPULATE THE DATA. 9672 05:22:02,000 --> 05:22:03,800 IF YOU'RE BLIND OR VISUALLY 9673 05:22:03,800 --> 05:22:07,600 IMPAIRED, YOU CAN -- YOUR 9674 05:22:07,600 --> 05:22:08,840 SCREENREADER WILL READ THE DATA, 9675 05:22:08,840 --> 05:22:11,240 BUT IT'S INCAPABLE OF 9676 05:22:11,240 --> 05:22:13,040 MANIPULATING THE DATA. 9677 05:22:13,040 --> 05:22:19,800 AND THIS IS A $10 MILLION, 9678 05:22:19,800 --> 05:22:20,560 $15 MILLION SOFTWARE DEVELOPMENT 9679 05:22:20,560 --> 05:22:22,880 PROJECT OVER A FIVE-YEAR PERIOD 9680 05:22:22,880 --> 05:22:26,960 TO ESSENTIALLY ANSWER THAT 9681 05:22:26,960 --> 05:22:28,160 QUESTION, CAN WE DEVELOP 9682 05:22:28,160 --> 05:22:32,760 SOFTWARE THAT WOULD ALLOW 9683 05:22:32,760 --> 05:22:34,920 SOMEONE WHO IS BLIND OR VISUALLY 9684 05:22:34,920 --> 05:22:35,760 IMPAIRED BUT FOR OTHER REASONS 9685 05:22:35,760 --> 05:22:39,240 ISN'T ABLE TO MANIPULATE DATA IN 9686 05:22:39,240 --> 05:22:40,720 ITS NORMAL FORMAT. 9687 05:22:40,720 --> 05:22:45,040 MANY OF YOU WHO PROBABLY HAVE 9688 05:22:45,040 --> 05:22:46,760 DOCTORAL STUDENTS OR GRADUATE 9689 05:22:46,760 --> 05:22:48,720 STUDENTS, IF THEY HAVE A 9690 05:22:48,720 --> 05:22:51,920 DISABILITY, KNOW SOME OF THE 9691 05:22:51,920 --> 05:22:53,560 CHALLENGES AROUND ACCESSING DATA 9692 05:22:53,560 --> 05:22:56,280 WHEN SOMEONE HAS A SIGNIFICANT 9693 05:22:56,280 --> 05:22:57,400 PERCEPTUAL PROBLEM. 9694 05:22:57,400 --> 05:23:00,400 SO ANYWAY, WE FUNDED THAT, THE 9695 05:23:00,400 --> 05:23:04,560 GRANTEE IS AEM, WHICH IS A 9696 05:23:04,560 --> 05:23:06,760 DC-BASED LARGE CONSULTANCY WHO 9697 05:23:06,760 --> 05:23:08,440 FRANKLY HAS DONE OTHER SOFTWARE 9698 05:23:08,440 --> 05:23:11,720 DEVELOPMENT FOR US AND DID A 9699 05:23:11,720 --> 05:23:12,400 SPECTACULAR JOB. 9700 05:23:12,400 --> 05:23:14,920 THEY ACTUALLY -- THAT PROJECT 9701 05:23:14,920 --> 05:23:16,680 CHANGED THE WAY WE COLLECT DATA 9702 05:23:16,680 --> 05:23:20,200 THROUGHOUT THE COUNTRY. 9703 05:23:20,200 --> 05:23:25,160 AND THEY'RE IN PARTNERSHIP WITH 9704 05:23:25,160 --> 05:23:27,120 WESTDAT WHICH ACTUALLY HAS 9705 05:23:27,120 --> 05:23:28,440 HANDLED OUR DATA FOR DECADES. 9706 05:23:28,440 --> 05:23:30,520 SO STAY TUNED, I THOUGHT YOU 9707 05:23:30,520 --> 05:23:32,200 MIGHT BE INTERESTED, AND WHILE 9708 05:23:32,200 --> 05:23:33,720 IT'S NOT AUTISM-FOCUSED, I 9709 05:23:33,720 --> 05:23:36,600 BELIEVE IT WILL HAVE AN IMPACT 9710 05:23:36,600 --> 05:23:38,840 ON MANY, MANY PEOPLE AND GIVE 9711 05:23:38,840 --> 05:23:41,880 PEOPLE ACCESS. 9712 05:23:41,880 --> 05:23:42,120 THANKS. 9713 05:23:42,120 --> 05:23:43,560 >>THANK YOU SO MUCH, LARRY, FOR 9714 05:23:43,560 --> 05:23:45,080 THAT UPDATE. 9715 05:23:45,080 --> 05:23:46,520 WE REALLY APPRECIATE IT. 9716 05:23:46,520 --> 05:23:48,160 JENNIFER JOHNSON, DO YOU HAVE AN 9717 05:23:48,160 --> 05:23:50,120 UPDATE FROM ACL? 9718 05:23:50,120 --> 05:23:52,360 >>I JUST WANTED TO MENTION A 9719 05:23:52,360 --> 05:23:54,080 COUPLE OTHER NEW PROJECTS THAT 9720 05:23:54,080 --> 05:23:55,080 WE'RE FUNDING. 9721 05:23:55,080 --> 05:23:57,400 I THINK YOU'VE IDENTIFIED 9722 05:23:57,400 --> 05:23:59,080 SEVERAL OF THE INITIATIVES THAT 9723 05:23:59,080 --> 05:23:59,840 WE'RE SUPPORTING. 9724 05:23:59,840 --> 05:24:03,240 I DID MENTION THE CENTER THAT WE 9725 05:24:03,240 --> 05:24:06,960 FUNDED THIS SEPTEMBER FOR 9726 05:24:06,960 --> 05:24:08,720 CO-OCCURRING INDIVIDUALS WITH 9727 05:24:08,720 --> 05:24:10,160 CO-OCCURRING MENTAL HEALTH 9728 05:24:10,160 --> 05:24:11,560 DISABILITIES AND INTELLECTUAL 9729 05:24:11,560 --> 05:24:12,960 AND DEVELOPMENTAL DISABILITIES, 9730 05:24:12,960 --> 05:24:13,560 SO THAT WILL CONTINUE OUR WORK 9731 05:24:13,560 --> 05:24:16,360 IN THE AREA OF HEALTH EQUITY. 9732 05:24:16,360 --> 05:24:21,160 BUT ALSO IN AN IMPORTANT AREA 9733 05:24:21,160 --> 05:24:22,960 WHERE PEOPLE EXPERIENCE 9734 05:24:22,960 --> 05:24:24,840 CO-OCCURRING MENTAL HEALTH AND 9735 05:24:24,840 --> 05:24:26,360 INTELLECTUAL AND DEVELOPMENTAL 9736 05:24:26,360 --> 05:24:28,320 DISABILITIES. 9737 05:24:28,320 --> 05:24:30,760 WE ALSO FUNDED THE SEPTEMBER -- 9738 05:24:30,760 --> 05:24:31,880 THE NATIONAL CENTER FOR 9739 05:24:31,880 --> 05:24:34,800 DIVERSITY, EQUITY AND INCLUSION, 9740 05:24:34,800 --> 05:24:37,120 AND THIS IS A CENTER THAT WILL 9741 05:24:37,120 --> 05:24:38,480 ALSO CONTRIBUTE TO THE WORK THAT 9742 05:24:38,480 --> 05:24:40,680 WE'RE DOING IN HEALTH EQUITY, 9743 05:24:40,680 --> 05:24:43,040 BUT ALSO BROADEN IT INTO OTHER 9744 05:24:43,040 --> 05:24:45,560 AREAS WHERE PEOPLE WITH 9745 05:24:45,560 --> 05:24:47,280 DISABILITIES EXPERIENCE 9746 05:24:47,280 --> 05:24:49,560 DISCRIMINATION AND SO THAT IS 9747 05:24:49,560 --> 05:24:52,080 SOMETHING THAT WILL CONTINUE. 9748 05:24:52,080 --> 05:24:55,400 AND WE ALSO JUST ANNOUNCED 9749 05:24:55,400 --> 05:24:57,160 FUNDING FOR NATIONAL CENTER ON 9750 05:24:57,160 --> 05:24:59,240 THE DIRECT CARE WORKFORCE THAT'S 9751 05:24:59,240 --> 05:25:01,560 FOCUSED ON BUILDING CAPACITY 9752 05:25:01,560 --> 05:25:06,480 WITHIN STATES AND COMMUNITIES TO 9753 05:25:06,480 --> 05:25:07,920 STRENGTHEN THE DIRECT CARE 9754 05:25:07,920 --> 05:25:08,360 WORKFORCE. 9755 05:25:08,360 --> 05:25:09,800 I THINK EVERYBODY IS PROBABLY 9756 05:25:09,800 --> 05:25:11,760 FAMILIAR WITH THE CRISIS THAT WE 9757 05:25:11,760 --> 05:25:15,320 HAVE BEEN IN THAT WAS MADE THAT 9758 05:25:15,320 --> 05:25:16,640 MUCH WORSE THROUGH COVID, AND 9759 05:25:16,640 --> 05:25:18,840 THAT PEOPLE ARE REALLY, REALLY 9760 05:25:18,840 --> 05:25:20,760 STRUGGLING THESE DAYS TO FIND 9761 05:25:20,760 --> 05:25:23,360 DIRECT CARE WORKERS AND RETAIN 9762 05:25:23,360 --> 05:25:25,560 THE DIRECT CARE WORKERS THAT 9763 05:25:25,560 --> 05:25:26,400 THEY HAVE. 9764 05:25:26,400 --> 05:25:29,040 AND SO THIS IS A PROJECT THAT IS 9765 05:25:29,040 --> 05:25:30,440 JOINTLY FUNDED BY THE 9766 05:25:30,440 --> 05:25:31,960 ADMINISTRATION ON DISABILITIES 9767 05:25:31,960 --> 05:25:34,040 AND THE ADMINISTRATION ON AGING 9768 05:25:34,040 --> 05:25:35,800 BECAUSE THIS IS AN ISSUE THAT 9769 05:25:35,800 --> 05:25:38,040 CUTS ACROSS BOTH DISABILITY AND 9770 05:25:38,040 --> 05:25:38,480 AGING. 9771 05:25:38,480 --> 05:25:40,280 SO THAT CENTER IS JUST GETTING 9772 05:25:40,280 --> 05:25:42,480 LAUNCHED, HAS A NUMBER OF AGING 9773 05:25:42,480 --> 05:25:44,320 AND DISABILITY PARTNERS THAT, 9774 05:25:44,320 --> 05:25:46,840 AGAIN, WILL BE LOOKING AT THE 9775 05:25:46,840 --> 05:25:48,520 CAREGIVER CRISIS AND HELPING TO 9776 05:25:48,520 --> 05:25:53,160 ADDRESS THAT. 9777 05:25:53,160 --> 05:25:54,760 >>THANK YOU SO MUCH FOR THOSE 9778 05:25:54,760 --> 05:25:55,760 UPDATES, JENNIFER, ON THOSE 9779 05:25:55,760 --> 05:25:57,000 DIFFERENT PROJECTS. 9780 05:25:57,000 --> 05:25:58,080 AND ARE THERE ANY OTHER MEMBERS 9781 05:25:58,080 --> 05:25:59,760 THAT HAVE UPDATES TO SHARE? 9782 05:25:59,760 --> 05:26:03,200 OH, I SEE, YETTA, YOU HAVE YOUR 9783 05:26:03,200 --> 05:26:03,440 HAND UP. 9784 05:26:03,440 --> 05:26:05,040 >>YES, THANKS, SUSAN. 9785 05:26:05,040 --> 05:26:06,440 JUST WANT TO HAVE A COUPLE OF 9786 05:26:06,440 --> 05:26:09,960 THINGS THAT ARE IN THE ROUND 9787 05:26:09,960 --> 05:26:12,160 ROBIN DOCUMENT, SO THE FIRST OF 9788 05:26:12,160 --> 05:26:13,920 THREE THAT I SUBMITTED, ONE IS 9789 05:26:13,920 --> 05:26:16,600 THAT THE CO-CREATED A NEW BOOK 9790 05:26:16,600 --> 05:26:18,640 ABOUT DEVELOPMENTAL MILESTONES, 9791 05:26:18,640 --> 05:26:20,800 AND IT'S CALLED MR. MARSHALL'S 9792 05:26:20,800 --> 05:26:21,920 BLOCK PARTY. 9793 05:26:21,920 --> 05:26:22,440 IT'S A CHILDREN'S BOOK AND 9794 05:26:22,440 --> 05:26:24,320 REALLY THE FOCUS IS TO SUPPORT 9795 05:26:24,320 --> 05:26:26,520 BLACK AND AFRICAN AMERICAN 9796 05:26:26,520 --> 05:26:28,360 FAMILIES AND MONITORING THEIR 9797 05:26:28,360 --> 05:26:28,840 CHILD'S DEVELOPMENT. 9798 05:26:28,840 --> 05:26:30,280 THIS WAS FUNDED THROUGH THE 9799 05:26:30,280 --> 05:26:32,720 CDC'S COVID RESPONSE PROJECT, SO 9800 05:26:32,720 --> 05:26:37,960 I AM THE CDC'S AMBASSADOR TO THE 9801 05:26:37,960 --> 05:26:38,520 DISTRICT OF COLUMBIA. 9802 05:26:38,520 --> 05:26:39,400 SO ONE OF THE THINGS I WAS 9803 05:26:39,400 --> 05:26:41,000 HEARING FROM FAMILIES IS THAT 9804 05:26:41,000 --> 05:26:44,680 THEY DON'T SEE THEMSELVES 9805 05:26:44,680 --> 05:26:46,360 REPRESENTED IN THE MATERIALS 9806 05:26:46,360 --> 05:26:48,000 OFTENTIMES, AND SO THIS WAS 9807 05:26:48,000 --> 05:26:52,320 BASICALLY A CALL, AN ANSWER TO 9808 05:26:52,320 --> 05:26:52,520 THAT. 9809 05:26:52,520 --> 05:26:53,400 I'M FOR THE FAMILIES IN D.C. , 9810 05:26:53,400 --> 05:26:55,120 BUT THE BOOK IS AVAILABLE AS AN 9811 05:26:55,120 --> 05:26:55,720 E-BOOK. 9812 05:26:55,720 --> 05:26:58,480 THE LINK IS IN THE ROUND ROBIN 9813 05:26:58,480 --> 05:26:59,760 DOCUMENT FOR FREE. 9814 05:26:59,760 --> 05:27:02,160 AS WELL AS CAN BE PURCHASED ON 9815 05:27:02,160 --> 05:27:03,960 AMAZON, BUT LITERALLY FOR THE 9816 05:27:03,960 --> 05:27:05,000 COST OF THE PRINTING OF THE BOOK 9817 05:27:05,000 --> 05:27:06,040 FOR SUSTAINABILITY PURPOSES. 9818 05:27:06,040 --> 05:27:07,600 OTHER THAN THAT, THE BOOK IS 9819 05:27:07,600 --> 05:27:11,440 FREE, YOU CAN ACCESS THE E-BOOK 9820 05:27:11,440 --> 05:27:13,800 SO LET FAMILIES KNOW THAT. 9821 05:27:13,800 --> 05:27:17,640 ALSO, I WORK WITH DR. LISA WARE 9822 05:27:17,640 --> 05:27:19,400 AT FAMILY VOICES ON A PROJECT 9823 05:27:19,400 --> 05:27:24,120 THAT'S PCORI FUNDED AND WE 9824 05:27:24,120 --> 05:27:25,320 TRAINED 3600 AFRICAN AMERICAN 9825 05:27:25,320 --> 05:27:25,920 PARENTS AND STAKEHOLDERS OVER 9826 05:27:25,920 --> 05:27:27,240 THE SUMMER AND SOME OF THE 9827 05:27:27,240 --> 05:27:28,880 THINGS THAT CAME UP IN THAT 9828 05:27:28,880 --> 05:27:30,760 CONVERSATION, AND WE'RE STILL IN 9829 05:27:30,760 --> 05:27:34,280 PROCESS, THAT I THINK RELATE TO 9830 05:27:34,280 --> 05:27:35,360 THE STRATEGIC PLAN SPECIFICALLY 9831 05:27:35,360 --> 05:27:36,760 FOR THE AFRICAN AMERICAN 9832 05:27:36,760 --> 05:27:38,400 COMMUNITY IS REALLY FOCUSING ON 9833 05:27:38,400 --> 05:27:40,240 LIFE AFTER THE DIAGNOSIS AND 9834 05:27:40,240 --> 05:27:41,480 INTEGRATION INTO THE COMMUNITY 9835 05:27:41,480 --> 05:27:42,640 ACROSS THE LIFESPAN, SO WE'VE 9836 05:27:42,640 --> 05:27:44,720 ALREADY BEEN TALKING ABOUT THAT 9837 05:27:44,720 --> 05:27:45,240 TODAY. 9838 05:27:45,240 --> 05:27:48,600 AND ANOTHER THING THAT WE FOUND 9839 05:27:48,600 --> 05:27:51,800 THROUGH THIS PROCESS IS THAT 9840 05:27:51,800 --> 05:27:53,960 THERE WERE QUITE A FEW OF THE 9841 05:27:53,960 --> 05:27:56,280 SELF-ADVOCATES THAT PARTICIPATED 9842 05:27:56,280 --> 05:27:56,920 WERE SELF DIAGNOSED. 9843 05:27:56,920 --> 05:27:58,880 SO I JUST WANT TO FLAG THAT FOR 9844 05:27:58,880 --> 05:28:00,320 THE COMMITTEE AS WELL. 9845 05:28:00,320 --> 05:28:01,240 THE THIRD THING WHICH I THINK IS 9846 05:28:01,240 --> 05:28:03,840 OF INTEREST TO EVERYONE IS THE 9847 05:28:03,840 --> 05:28:06,080 SUPPORTING ACCESS FOR EVERYONE 9848 05:28:06,080 --> 05:28:13,600 INITIATIVE, I AND I BELIEVE MO I 9849 05:28:13,600 --> 05:28:15,480 BELIEVE THEY HAVE EXTENDED OUT 9850 05:28:15,480 --> 05:28:17,520 THE CALL FOR PUBLIC TESTIMONY ON 9851 05:28:17,520 --> 05:28:18,840 THEIR WEBSITE, THE DUE DATE IS 9852 05:28:18,840 --> 05:28:23,040 OCTOBER 30 FI BUT R 31ST. 9853 05:28:23,040 --> 05:28:25,560 THERE WAS A PUBLIC FORUM HELD 9854 05:28:25,560 --> 05:28:27,600 LAST MONTH, TWO DAYS WHERE 9855 05:28:27,600 --> 05:28:28,360 PEOPLE PROVIDED TESTIMONY, 9856 05:28:28,360 --> 05:28:29,560 INITIALLY THEY CLOSED IT BUT 9857 05:28:29,560 --> 05:28:32,880 OPENED IT BACK UP BECAUSE WE 9858 05:28:32,880 --> 05:28:33,840 WANT TO MAKE SURE WE'RE GETTING 9859 05:28:33,840 --> 05:28:34,680 DIVERSE POINTS OF VIEW BUT 9860 05:28:34,680 --> 05:28:36,200 REALLY THINK ABOUT THIS AS THE 9861 05:28:36,200 --> 05:28:37,320 AUTISM-FRIENDLY HOSPITAL 9862 05:28:37,320 --> 05:28:37,600 INITIATIVE. 9863 05:28:37,600 --> 05:28:43,280 AND REALLY WANTING TO MAKE SURE 9864 05:28:43,280 --> 05:28:44,600 THAT PROVIDERS HAVE A CLEAR 9865 05:28:44,600 --> 05:28:46,400 UNDERSTANDING OF HOW TO SUPPORT 9866 05:28:46,400 --> 05:28:47,040 INDIVIDUALS AND THEIR FAMILIES 9867 05:28:47,040 --> 05:28:48,920 ACROSS THE LIFESPAN, SO 9868 05:28:48,920 --> 05:28:50,680 DEFINITELY CHECK OUT MORE DETAIL 9869 05:28:50,680 --> 05:28:52,760 IN THE ROUND ROBIN DOCUMENT AND 9870 05:28:52,760 --> 05:28:53,880 I HOPE THAT YOU ALL WILL SUBMIT 9871 05:28:53,880 --> 05:28:54,200 TESTIMONIES. 9872 05:28:54,200 --> 05:28:56,200 THANK YOU. 9873 05:28:56,200 --> 05:28:57,520 >>THANK YOU SO MUCH FOR SHARING 9874 05:28:57,520 --> 05:28:59,520 THAT, YETTA. 9875 05:28:59,520 --> 05:29:00,160 I DIDN'T MENTION THIS, BUT THERE 9876 05:29:00,160 --> 05:29:03,240 IS A ROUND ROBIN DOCUMENT FOR 9877 05:29:03,240 --> 05:29:04,240 ANYONE WHO'S WATCHING THIS 9878 05:29:04,240 --> 05:29:07,800 MEETING TODAY, YOU CAN GO ONLINE 9879 05:29:07,800 --> 05:29:09,520 AND OUR MEMBERS HAVE SUBMITTED 9880 05:29:09,520 --> 05:29:11,360 IN WRITING A LOT OF DIFFERENT 9881 05:29:11,360 --> 05:29:11,920 UPDATES, SO PLEASE CHECK OUT 9882 05:29:11,920 --> 05:29:12,240 THAT DOCUMENT. 9883 05:29:12,240 --> 05:29:16,520 NEXT WE'LL GO TO ALYCIA. 9884 05:29:16,520 --> 05:29:16,760 HALLADAY. 9885 05:29:16,760 --> 05:29:17,680 >>HI, EVERYONE. 9886 05:29:17,680 --> 05:29:19,000 THANK YOU, SUSAN. 9887 05:29:19,000 --> 05:29:22,680 I'LL BE QUICK. 9888 05:29:22,680 --> 05:29:24,560 I HAVE SOME ANNOUNCEMENTS. 9889 05:29:24,560 --> 05:29:27,880 FIRST OUR PRE AND POSTDOCTORAL 9890 05:29:27,880 --> 05:29:29,240 FELLOWSHIP MECHANISM ALONG WITH 9891 05:29:29,240 --> 05:29:31,840 OUR POST UNDERGRADUATE MECHANISM 9892 05:29:31,840 --> 05:29:32,600 IS LIVE. 9893 05:29:32,600 --> 05:29:34,280 THE DEADLINE IS EARLY DECEMBER, 9894 05:29:34,280 --> 05:29:35,600 SO BEFORE OUR NEXT IACC MEETING, 9895 05:29:35,600 --> 05:29:36,920 SO I THOUGHT I WOULD PUT A PLUG 9896 05:29:36,920 --> 05:29:39,120 IN TO MAKE SURE THAT EVERYBODY 9897 05:29:39,120 --> 05:29:41,120 WAS AWARE OF THAT. 9898 05:29:41,120 --> 05:29:43,120 ALSO THANK YOU, SUSAN, FOR 9899 05:29:43,120 --> 05:29:44,320 MENTIONING THE PARTICIPATE IN 9900 05:29:44,320 --> 05:29:45,360 RESEARCH PORTAL. 9901 05:29:45,360 --> 05:29:46,240 THIS IS SOMETHING WE HAD WANTED 9902 05:29:46,240 --> 05:29:51,000 TO DO FOR A WHILE. 9903 05:29:51,000 --> 05:29:53,600 YEARS AGO, INTERACTIVE AUTISM 9904 05:29:53,600 --> 05:29:56,800 NENETWORK WHICH I KNOW HAS MOVED 9905 05:29:56,800 --> 05:30:01,840 OVER TO SPARK HAD A DASHBOARD 9906 05:30:01,840 --> 05:30:02,560 WHERE YOU COULD ENTER IN THE 9907 05:30:02,560 --> 05:30:03,440 CHARACTERISTICS OF YOUR FAMILY 9908 05:30:03,440 --> 05:30:04,520 OURSELF AND THEN A NUMBER OF 9909 05:30:04,520 --> 05:30:06,040 OPTIONS WOULD POP UP FOR YOU TO 9910 05:30:06,040 --> 05:30:07,440 PARTICIPATE IN RESEARCH. 9911 05:30:07,440 --> 05:30:09,720 FRANKLY, I DON'T KNOW OF A STUDY 9912 05:30:09,720 --> 05:30:11,760 THAT DOESN'T HAVE PROBLEMS 9913 05:30:11,760 --> 05:30:12,880 RECRUITING INDIVIDUALS AND 9914 05:30:12,880 --> 05:30:16,120 FAMILIES SO WE THOUGHT THIS WAS 9915 05:30:16,120 --> 05:30:17,360 A GREAT OPPORTUNITY. 9916 05:30:17,360 --> 05:30:20,160 IT FREE FOR FAMILIES, FREE FOR 9917 05:30:20,160 --> 05:30:20,480 RESEARCHERS. 9918 05:30:20,480 --> 05:30:21,920 YOU CAN SEARCH BY AGE, YOU CAN 9919 05:30:21,920 --> 05:30:25,080 SEARCH BY YOUR PREFERENCE AND 9920 05:30:25,080 --> 05:30:26,600 TYPE OF STUDY, YOU CAN SEARCH 9921 05:30:26,600 --> 05:30:28,840 WHAT IS AVAILABLE IN YOUR 9922 05:30:28,840 --> 05:30:29,720 COMMUNITY AND ONLINE. 9923 05:30:29,720 --> 05:30:32,640 WE'RE HOPING TO, AS WE GO 9924 05:30:32,640 --> 05:30:33,840 FORWARD, HELP THE RESEARCHERS 9925 05:30:33,840 --> 05:30:35,440 WHO HOST MAKE THEM MORE FRIENDLY 9926 05:30:35,440 --> 05:30:41,360 AND ACCESSIBLE TO THE COMMUNITY. 9927 05:30:41,360 --> 05:30:43,040 I KNOW THAT'S NOT ALWAYS EQUAL. 9928 05:30:43,040 --> 05:30:44,160 FINALLY SINCE OUR LAST MEETING, 9929 05:30:44,160 --> 05:30:47,200 WE HAVE HOSTED AND SHARED THE 9930 05:30:47,200 --> 05:30:51,760 MEETING WE DID, WE COLLABORATED 9931 05:30:51,760 --> 05:30:55,040 WITH THE -- SYNDROME FOUNDATION, 9932 05:30:55,040 --> 05:30:58,480 THE CDKL5 FOUNDATION, I'M 9933 05:30:58,480 --> 05:31:00,040 OBVIOUSLY FOR GETTING -- 9934 05:31:00,040 --> 05:31:01,880 UNIVERSITY OF INDIANA ON 9935 05:31:01,880 --> 05:31:07,640 INITIATIVE TO BETTER UNDERSTAND 9936 05:31:07,640 --> 05:31:08,400 GASTROINTESTINAL SYMPTOMS IN 9937 05:31:08,400 --> 05:31:09,680 INDIVIDUALS WITH 9938 05:31:09,680 --> 05:31:10,280 NEURODEVELOPMENTAL DISORDERS, 9939 05:31:10,280 --> 05:31:13,440 AND THESE CAN BE FATAL. 9940 05:31:13,440 --> 05:31:15,840 A LOT OF TIMES INDIVIDUALS DON'T 9941 05:31:15,840 --> 05:31:17,440 SOMETIMES UNDERSTAND OR ARE ABLE 9942 05:31:17,440 --> 05:31:19,200 TO TOLERATE THE DIAGNOSTIC 9943 05:31:19,200 --> 05:31:20,920 PROCEDURES INVOLVED IN 9944 05:31:20,920 --> 05:31:24,960 GASTROINTESTINAL ASSESSMENTS. 9945 05:31:24,960 --> 05:31:25,760 SO WE HAD A TWO-DAY MEETING 9946 05:31:25,760 --> 05:31:26,920 AROUND IT, SPECIFICALLY FOCUSED 9947 05:31:26,920 --> 05:31:29,280 ON THOSE WITH NEURODEVELOPMENTAL 9948 05:31:29,280 --> 05:31:31,920 DISORDERS AND IDENTIFIED AREAS 9949 05:31:31,920 --> 05:31:33,200 OF NEED GOING FORWARD, AND WE 9950 05:31:33,200 --> 05:31:35,240 HAD ALSO CONDUCTED BOTH THE 9951 05:31:35,240 --> 05:31:35,920 QUANTITATIVE AND QUALITATIVE 9952 05:31:35,920 --> 05:31:37,640 STUDY ABOUT PEOPLE'S EXPERIENCES 9953 05:31:37,640 --> 05:31:41,800 WITH G.I. ISSUES AND AUTISM, 9954 05:31:41,800 --> 05:31:42,440 AND/OR DEVELOPMENTAL DISORDERS. 9955 05:31:42,440 --> 05:31:44,280 SO YOU CAN GO TO OUR WEBSITE, 9956 05:31:44,280 --> 05:31:48,720 CANDID GI.COM, WATCH ALL THE 9957 05:31:48,720 --> 05:31:49,280 VIDEOS AND SEE ALL THE 9958 05:31:49,280 --> 05:31:50,280 PRESENTATIONS AND THEN ALSO 9959 05:31:50,280 --> 05:31:52,600 THERE'S SOME OTHER FEATURES ON 9960 05:31:52,600 --> 05:31:55,720 THAT WEBSITE THAT YOU CAN SEE. 9961 05:31:55,720 --> 05:31:57,720 SO THAT'S IT. 9962 05:31:57,720 --> 05:31:59,080 >>THANK YOU, ALYCIA. 9963 05:31:59,080 --> 05:32:00,080 I'M GOING TO GO TO STEVEN. 9964 05:32:00,080 --> 05:32:01,560 DID YOU HAVE SOMETHING THAT CAME 9965 05:32:01,560 --> 05:32:04,120 IN IN WRITING? 9966 05:32:04,120 --> 05:32:05,720 >>YES, HI. 9967 05:32:05,720 --> 05:32:07,280 JENNY MAI PHAN IS PROMOTING A 9968 05:32:07,280 --> 05:32:10,480 RESEARCH STUDY FROM CALIFORNIA 9969 05:32:10,480 --> 05:32:13,560 STATE AT FRESNO. 9970 05:32:13,560 --> 05:32:14,720 THEY'RE RECRUITING ASIAN 9971 05:32:14,720 --> 05:32:15,840 FAMILIES OF CHILDREN BETWEEN THE 9972 05:32:15,840 --> 05:32:18,920 AGES OF 3 AND 21. 9973 05:32:18,920 --> 05:32:20,040 SHE SAYS ASIAN FAMILIES OF 9974 05:32:20,040 --> 05:32:22,680 CHILDREN WITH INTELLECTUAL AND 9975 05:32:22,680 --> 05:32:23,280 DEVELOPMENTAL DISABILITIES ARE 9976 05:32:23,280 --> 05:32:26,800 ASKED TO SHARE THEIR EXPERIENCES 9977 05:32:26,800 --> 05:32:29,960 PARTICIPATING IN A CHILD'S IEP, 9978 05:32:29,960 --> 05:32:32,720 INDIVIDUALIZED EDUCATION PROGRAM 9979 05:32:32,720 --> 05:32:32,960 MEETINGS. 9980 05:32:32,960 --> 05:32:33,960 FAMILIES ARE ASKED TO COMPLETE 9981 05:32:33,960 --> 05:32:36,400 QUESTIONNAIRES IN A 30-MINUTE 9982 05:32:36,400 --> 05:32:36,800 INTERVIEW. 9983 05:32:36,800 --> 05:32:39,320 FOR MORE INFORMATION, PLEASE 9984 05:32:39,320 --> 05:32:46,240 CONTACT CHRISTINA R IOS AT KR 9985 05:32:46,240 --> 05:32:46,800 IOS@MAIL.FRESNOSTATE.EDU. 9986 05:32:46,800 --> 05:32:48,040 >>THANK YOU, JENNY. 9987 05:32:48,040 --> 05:32:52,000 NEXT, DENA GASSNER. 9988 05:32:52,000 --> 05:32:54,760 >>I JUST WANTED TO SHARE THAT 9989 05:32:54,760 --> 05:32:56,520 DREXEL IS SPONSORING A POWER 9990 05:32:56,520 --> 05:33:01,880 POLICY LUNCHEON NOVEMBER 2ND 9991 05:33:01,880 --> 05:33:03,320 VIRTUALLY FROM 12:00 UNTIL 9992 05:33:03,320 --> 05:33:04,680 1:00 EASTERN TIME. 9993 05:33:04,680 --> 05:33:05,360 MYSELF AND THREE OTHER 9994 05:33:05,360 --> 05:33:07,080 COLLEAGUES WHO ARE PART OF THE 9995 05:33:07,080 --> 05:33:08,840 AIRP NETWORK ON REPRODUCTIVE 9996 05:33:08,840 --> 05:33:10,640 HEALTHCARE ARE GOING TO BE 9997 05:33:10,640 --> 05:33:12,720 UNPACKING REPRODUCTIVE RIGHTS 9998 05:33:12,720 --> 05:33:14,680 AND DISABILITY RIGHTS. 9999 05:33:14,680 --> 05:33:17,920 SO IF ANYBODY IS INTERESTED, 10000 05:33:17,920 --> 05:33:19,240 IT'S BEEN ON FACEBOOK. 10001 05:33:19,240 --> 05:33:20,800 YOU CAN LOOK AT A VARIETY OF 10002 05:33:20,800 --> 05:33:22,160 DIFFERENT PEOPLE'S PAGES AND 10003 05:33:22,160 --> 05:33:23,280 PICK UP ON IT. 10004 05:33:23,280 --> 05:33:24,880 I ALSO DROPPED A LINK HERE IN 10005 05:33:24,880 --> 05:33:27,880 THE CHAT. 10006 05:33:27,880 --> 05:33:28,320 THANK YOU. 10007 05:33:28,320 --> 05:33:29,360 >>THANK YOU, DENA. 10008 05:33:29,360 --> 05:33:31,520 IF YOU NEED TO SEND THAT, IF 10009 05:33:31,520 --> 05:33:32,120 IT'S NOT IN THE ROUND ROBIN 10010 05:33:32,120 --> 05:33:33,480 DOCUMENT, YOU CAN SEND TO US AND 10011 05:33:33,480 --> 05:33:37,280 WE'LL UPDATE THE DOCUMENT. 10012 05:33:37,280 --> 05:33:40,360 SCOTT ROBERTSON. 10013 05:33:40,360 --> 05:33:42,960 >>THANKS, SUSAN. 10014 05:33:42,960 --> 05:33:46,680 IF I COULD SEND A FEW THINGS FOR 10015 05:33:46,680 --> 05:33:48,400 URLs TO UPDATE THE DOCUMENT, 10016 05:33:48,400 --> 05:33:48,960 THAT WOULD BE GREAT. 10017 05:33:48,960 --> 05:33:50,160 I APOLOGIZE FOR NOT HAVING SENT 10018 05:33:50,160 --> 05:33:54,160 IT EARLIER IN THE WRITTEN FORUM. 10019 05:33:54,160 --> 05:33:55,200 BOTH FOR OUR -- THE 10020 05:33:55,200 --> 05:33:58,880 NEURODIVERSITY AN IN THE WORKPLE 10021 05:33:58,880 --> 05:34:00,680 GUIDE TOOLKIT THAT WAS MENTIONED 10022 05:34:00,680 --> 05:34:02,320 IN THE REMARKS AT THE BEGINNING 10023 05:34:02,320 --> 05:34:03,720 OF THE DAY ON NATIONAL 10024 05:34:03,720 --> 05:34:06,480 DISABILITY EMPLOYMENT AWARENESS 10025 05:34:06,480 --> 05:34:08,840 MONTH, AND WE HAD AN EVENT 10026 05:34:08,840 --> 05:34:10,120 RECENTLY OF CORPORATE EMPLOYERS 10027 05:34:10,120 --> 05:34:11,360 AND DISABILITY ADVOCACY LEADERS 10028 05:34:11,360 --> 05:34:12,960 WHO CAME TOGETHER TO DISCUSS 10029 05:34:12,960 --> 05:34:16,560 INNOVATIVE APPROACHES TO 10030 05:34:16,560 --> 05:34:17,880 FOSTERING MENTAL HEALTH FRIENDLY 10031 05:34:17,880 --> 05:34:18,360 WORKPLACES. 10032 05:34:18,360 --> 05:34:20,200 SO I CAN SEND YOU THE LINK FOR 10033 05:34:20,200 --> 05:34:22,200 THAT FOR THE VIDEO IN HONOR OF 10034 05:34:22,200 --> 05:34:23,000 NATIONAL DISABILITY EMPLOYMENT 10035 05:34:23,000 --> 05:34:24,000 AWARENESS MONTH AND THIS WAS AN 10036 05:34:24,000 --> 05:34:25,840 EMPLOYER CHAT ON WORKPLACE 10037 05:34:25,840 --> 05:34:26,440 MENTAL HEALTH AND WELL-BEING. 10038 05:34:26,440 --> 05:34:28,440 AND THEN I CAN ALSO INCLUDE THE 10039 05:34:28,440 --> 05:34:30,520 LINK FOR OUR GENERAL AND 10040 05:34:30,520 --> 05:34:32,080 NATIONAL DISABILITY EMPLOYMENT 10041 05:34:32,080 --> 05:34:32,560 AWARENESS MONTH SITE. 10042 05:34:32,560 --> 05:34:34,480 I KNOW THE MONTH IS ENDING, BUT 10043 05:34:34,480 --> 05:34:35,880 IF ANYBODY STILL WANTED TO 10044 05:34:35,880 --> 05:34:37,600 ORGANIZE ANY EVENT OR WANTED TO 10045 05:34:37,600 --> 05:34:39,600 ORGANIZE EVENT FOR 2013, AND 10046 05:34:39,600 --> 05:34:41,480 THEN THE OTHER BRIEF THING TO 10047 05:34:41,480 --> 05:34:44,160 MENTION TOO IS THAT OUR 10048 05:34:44,160 --> 05:34:45,040 PARTNERSHIP ON INCLUSIVE 10049 05:34:45,040 --> 05:34:46,880 APPRENTICESHIP HAS EQUAL 10050 05:34:46,880 --> 05:34:47,480 EMPLOYMENT OPPORTUNITY TOOLKIT 10051 05:34:47,480 --> 05:34:50,720 AND SOME OTHER UPDATED 10052 05:34:50,720 --> 05:34:51,360 RESOURCES, SO I CAN SEND YOU 10053 05:34:51,360 --> 05:34:52,600 THOSE LINKS. 10054 05:34:52,600 --> 05:34:54,400 THANKS, SUSAN, AGAIN SORRY THAT 10055 05:34:54,400 --> 05:35:00,640 I HAD IT I HADN'T SENT THESE INN 10056 05:35:00,640 --> 05:35:01,640 FORM BEFORE. 10057 05:35:01,640 --> 05:35:08,280 >>AISHA DICKERSON. 10058 05:35:08,280 --> 05:35:10,040 >>THEY WON'T LET ME TURN MY 10059 05:35:10,040 --> 05:35:11,320 CAMERA ON, WHICH IS FINE, BUT IT 10060 05:35:11,320 --> 05:35:13,120 JUST OCCURRED TO ME -- THERE WE 10061 05:35:13,120 --> 05:35:13,280 GO. 10062 05:35:13,280 --> 05:35:14,480 IT JUST OCCURRED TO ME RIGHT NOW 10063 05:35:14,480 --> 05:35:17,400 THAT I DID NOT SEND IN THIS 10064 05:35:17,400 --> 05:35:18,920 INFORMATION FOR A SYMPOSIUM 10065 05:35:18,920 --> 05:35:21,320 THAT'S BEING HOSTED AT TUFTS 10066 05:35:21,320 --> 05:35:23,160 UNIVERSITY ON NOVEMBER 10TH ON 10067 05:35:23,160 --> 05:35:26,080 THE ROLE OF FOOD AND NUTRITION 10068 05:35:26,080 --> 05:35:28,600 IN AUTISM, SO I'LL ADD THAT TO 10069 05:35:28,600 --> 05:35:29,600 THE ROUND ROBIN DOCUMENT. 10070 05:35:29,600 --> 05:35:31,440 SO YOU ALL CAN SHARE IT. 10071 05:35:31,440 --> 05:35:33,920 >>SO FEEL FREE TO SEND THAT IN 10072 05:35:33,920 --> 05:35:34,920 IF ANYONE HAS ANYTHING ELSE TO 10073 05:35:34,920 --> 05:35:36,320 SEND IN, YOU CAN SEND TO US AND 10074 05:35:36,320 --> 05:35:39,560 WE WILL UPDATE IT AND YOU WILL 10075 05:35:39,560 --> 05:35:40,320 HAVE ALL OF THAT INFORMATION. 10076 05:35:40,320 --> 05:35:42,520 WE REALLY APPRECIATE EVERYBODY 10077 05:35:42,520 --> 05:35:45,920 SHARING THE EVENTS AND 10078 05:35:45,920 --> 05:35:50,120 ACTIVITIES FROM AROUND THE 10079 05:35:50,120 --> 05:35:50,760 COMMUNITY. 10080 05:35:50,760 --> 05:35:52,320 SO IN CLOSING, AND DR. GORDON 10081 05:35:52,320 --> 05:35:53,640 CAN JOIN ME ON THIS, I WANT TO 10082 05:35:53,640 --> 05:35:57,560 SAY THANK YOU TO ALL OF THE 10083 05:35:57,560 --> 05:35:58,400 PANELS AND PRESENTATIONS WE'VE 10084 05:35:58,400 --> 05:35:59,080 HAD TODAY. 10085 05:35:59,080 --> 05:36:00,800 WE'VE HAD REALLY GREAT 10086 05:36:00,800 --> 05:36:03,000 DISCUSSIONS ON EMPLOYMENT AND 10087 05:36:03,000 --> 05:36:04,760 AGING, AND BOTH OF THESE TOPICS 10088 05:36:04,760 --> 05:36:08,360 EVERY YEAR WE DO TRY TO AT NDAEM 10089 05:36:08,360 --> 05:36:09,520 TALK ABOUT WHAT'S GOING ON IN 10090 05:36:09,520 --> 05:36:11,000 EMPLOYMENT AND IT'S BEEN A GOAL 10091 05:36:11,000 --> 05:36:12,360 FOR A WHILE TO REALLY HAVE A 10092 05:36:12,360 --> 05:36:13,440 GOOD DISCUSSION ON AGING AND 10093 05:36:13,440 --> 05:36:15,840 AUTISM, AND I FEEL LIKE WE DID A 10094 05:36:15,840 --> 05:36:17,320 GREAT JOB HEARING FROM A LOT OF 10095 05:36:17,320 --> 05:36:19,760 DIFFERENT PERSPECTIVES AND 10096 05:36:19,760 --> 05:36:20,960 DISCUSSING WHAT'S KNOWN IN THE 10097 05:36:20,960 --> 05:36:22,360 RESEARCH FIELD RIGHT NOW. 10098 05:36:22,360 --> 05:36:24,360 SO THANK YOU SO MUCH FOR ALL 10099 05:36:24,360 --> 05:36:25,200 YOUR ENGAGEMENT ON THAT. 10100 05:36:25,200 --> 05:36:27,760 AND ALSO FOR YOUR ENGAGEMENT ON 10101 05:36:27,760 --> 05:36:29,000 THE STRATEGIC PLAN PROCESS. 10102 05:36:29,000 --> 05:36:30,640 WE HAVE SOME ACTION ITEMS WHICH 10103 05:36:30,640 --> 05:36:33,000 I OUTLINED EARLIER AND I'LL 10104 05:36:33,000 --> 05:36:33,880 FOLLOW UP WITH EMAIL TO LET 10105 05:36:33,880 --> 05:36:36,200 PEOPLE KNOW WHAT WE NEED FOR THE 10106 05:36:36,200 --> 05:36:37,400 NEXT STEPS BEFORE OUR JANUARY 10107 05:36:37,400 --> 05:36:39,560 MEETING. 10108 05:36:39,560 --> 05:36:41,000 JOSH, DO YOU HAVE SOME REMARKS? 10109 05:36:41,000 --> 05:36:42,480 >>YEAH, I WANT TO THANK 10110 05:36:42,480 --> 05:36:45,200 EVERYONE FOR THEIR RESPECTFUL 10111 05:36:45,200 --> 05:36:45,480 DISCUSSIONS. 10112 05:36:45,480 --> 05:36:47,080 I KNOW THAT SOME OF THE COMMENTS 10113 05:36:47,080 --> 05:36:47,960 ARE CONTROVERSIAL, BUT I THINK 10114 05:36:47,960 --> 05:36:49,280 THEY ALSO GIVE US THINGS TO 10115 05:36:49,280 --> 05:36:50,880 THINK ABOUT AND AS WAS BROUGHT 10116 05:36:50,880 --> 05:36:52,320 UP BY SEVERAL INDIVIDUALS, FOR 10117 05:36:52,320 --> 05:36:55,800 EXAMPLE, THINKING ABOUT MAKING 10118 05:36:55,800 --> 05:36:58,840 SURE WE ARE CONSIDERED ABOUT THE 10119 05:36:58,840 --> 05:37:00,160 THE -- CONSIDERATE ABOUT THE 10120 05:37:00,160 --> 05:37:01,360 LANGUAGE WE USE AND ALSO MAKING 10121 05:37:01,360 --> 05:37:03,440 SURE WE ARE REPRESENTING THE 10122 05:37:03,440 --> 05:37:05,800 FULL SPECTRUM OF AUTISM AND I 10123 05:37:05,800 --> 05:37:06,880 THOUGHT THERE WAS SOME VERY 10124 05:37:06,880 --> 05:37:07,800 THOUGHTFUL DISCUSSION ABOUT OUR 10125 05:37:07,800 --> 05:37:09,760 EFFORTS IN THAT REGARD. 10126 05:37:09,760 --> 05:37:11,680 SO THANK YOU VERY MUCH TO THAT. 10127 05:37:11,680 --> 05:37:14,520 THERE WAS A COMMENT MADE BY 10128 05:37:14,520 --> 05:37:15,880 SOMEONE AND I THINK ECHOED BY 10129 05:37:15,880 --> 05:37:17,880 SOMEONE ELSE THAT THERE HAVE 10130 05:37:17,880 --> 05:37:20,400 BEEN CONCERNS ABOUT SOME PEOPLE 10131 05:37:20,400 --> 05:37:21,160 MONOPOLIZING THE CONVERSATION. 10132 05:37:21,160 --> 05:37:23,120 I FELT LIKE TODAY THAT WAS NOT 10133 05:37:23,120 --> 05:37:26,400 THE CASE, AND IN FACT, I 10134 05:37:26,400 --> 05:37:27,560 APOLOGIZE, I THINK SOMEONE ELSE 10135 05:37:27,560 --> 05:37:30,000 SAID, OH, I'M WORRIED I MIGHT BE 10136 05:37:30,000 --> 05:37:31,600 MONOPOLIZING THE CONVERSATION 10137 05:37:31,600 --> 05:37:34,800 BUT I WANT TO SAY THIS ANYWAY. 10138 05:37:34,800 --> 05:37:36,200 I'D HAVE TO SAY THAT IT MY JOB 10139 05:37:36,200 --> 05:37:38,600 TO MAKE SURE THAT DOESN'T 10140 05:37:38,600 --> 05:37:41,360 HAPPEN, AND IF THERE ARE OTHER 10141 05:37:41,360 --> 05:37:43,000 FOLKS WHO HAVEN'T SPOKEN YET 10142 05:37:43,000 --> 05:37:44,520 WAITING IN THE CUE, I CAN 10143 05:37:44,520 --> 05:37:46,000 ELEVATE THEM, ET CETERA, BUT SO 10144 05:37:46,000 --> 05:37:47,480 FAR WE'VE BEEN ABLE TO FIT IN 10145 05:37:47,480 --> 05:37:48,960 THE FULL BREADTH OF THE 10146 05:37:48,960 --> 05:37:50,680 CONVERSATION AROUND MOST OF THE 10147 05:37:50,680 --> 05:37:51,280 ISSUES THAT WE'VE TALKED ABOUT 10148 05:37:51,280 --> 05:37:53,320 TODAY. 10149 05:37:53,320 --> 05:37:54,720 WITH SOME LIMITED EXCEPTIONS. 10150 05:37:54,720 --> 05:37:57,080 SO I FEEL LIKE TODAY WAS VERY 10151 05:37:57,080 --> 05:37:57,640 GOOD IN TERMS OF DIFFERENT 10152 05:37:57,640 --> 05:37:58,680 PEOPLE CHIMING IN, AND I THINK 10153 05:37:58,680 --> 05:37:59,840 WE DEFINITELY SAUL THAT 10154 05:37:59,840 --> 05:38:01,520 PERSPECTIVE BUT I WILL CONTINUE 10155 05:38:01,520 --> 05:38:03,240 AS CHAIR OF THE IACC TO WATCH 10156 05:38:03,240 --> 05:38:04,440 OUT FOR THAT. 10157 05:38:04,440 --> 05:38:05,920 AND IF ANYONE DOES HAVE ANY 10158 05:38:05,920 --> 05:38:07,720 CONCERNS ABOUT NOT BEING ABLE TO 10159 05:38:07,720 --> 05:38:10,400 GET IN THEIR COMMENTS, PLEASE 10160 05:38:10,400 --> 05:38:11,840 LET ME KNOW OFFLINE AND I'LL BE 10161 05:38:11,840 --> 05:38:14,000 HAPPY TO MAKE SURE THAT 10162 05:38:14,000 --> 05:38:15,440 EVERYBODY GETS THEIR 10163 05:38:15,440 --> 05:38:16,960 OPPORTUNITIES. 10164 05:38:16,960 --> 05:38:18,280 SO THANK YOU VERY, VERY MUCH, 10165 05:38:18,280 --> 05:38:20,800 AND LAST I DO WANT EVERYONE, AS 10166 05:38:20,800 --> 05:38:23,520 SUSAN WILL TALK ABOUT UPCOMING 10167 05:38:23,520 --> 05:38:26,040 ACTIONS, I DO WANT EVERYONE TO, 10168 05:38:26,040 --> 05:38:27,320 AS THEY LOOK OVER THE STRATEGIC 10169 05:38:27,320 --> 05:38:29,640 PLAN, THINK ABOUT WHAT THEY 10170 05:38:29,640 --> 05:38:31,520 HEARD TODAY, AND WHETHER WE 10171 05:38:31,520 --> 05:38:35,160 MIGHT NEED TO MAKE CHANGES TO 10172 05:38:35,160 --> 05:38:37,720 THE DOCUMENT AS WE GO TOWARDS 10173 05:38:37,720 --> 05:38:41,960 FINALIZING IT EARLY NEXT YEAR. 10174 05:38:41,960 --> 05:38:43,160 >>YES, THANK YOU. 10175 05:38:43,160 --> 05:38:44,600 I'VE LISTED HERE THE UPCOMING 10176 05:38:44,600 --> 05:38:46,000 ACTION ITEMS BUT DON'T FEEL LIKE 10177 05:38:46,000 --> 05:38:48,040 YOU HAVE TO MEMORIZE THEM OFF 10178 05:38:48,040 --> 05:38:48,800 THE SLIDE. 10179 05:38:48,800 --> 05:38:50,200 I'LL SEND YOU AN EMAIL OR 10180 05:38:50,200 --> 05:38:51,440 SEVERAL EMAILS TO GET ALL OF 10181 05:38:51,440 --> 05:38:52,640 THESE FROM YOU. 10182 05:38:52,640 --> 05:38:53,240 DON'T WANT TO CLOSE WITHOUT 10183 05:38:53,240 --> 05:38:54,120 SAYING THANK YOU TO THE 10184 05:38:54,120 --> 05:38:55,320 WONDERFUL STAFF IN THE OFFICE OF 10185 05:38:55,320 --> 05:38:57,520 AUTISM RESEARCH COORDINATION WHO 10186 05:38:57,520 --> 05:38:59,480 BROUGHT YOU THIS MEETING TODAY, 10187 05:38:59,480 --> 05:39:00,880 HAVE BEEN WORKING VERY HARD 10188 05:39:00,880 --> 05:39:01,960 BEHIND THE SCENES ON ALL AS 10189 05:39:01,960 --> 05:39:06,240 PENGTS OF THE MEETPENGTS OF THEE 10190 05:39:06,240 --> 05:39:08,240 OVER 100 PAGE STRATEGIC PLAN 10191 05:39:08,240 --> 05:39:08,920 DRAFT WE HAVE IN FRONT OF US IS 10192 05:39:08,920 --> 05:39:09,920 THE PRODUCT OF A LOT OF HARD 10193 05:39:09,920 --> 05:39:11,800 WORK TO TRY TO INCORPORATE ALL 10194 05:39:11,800 --> 05:39:13,960 OF YOUR VALUABLE FEEDBACK AND 10195 05:39:13,960 --> 05:39:14,200 COMMENTS. 10196 05:39:14,200 --> 05:39:14,960 SO THANK YOU TO THE TEAM AND 10197 05:39:14,960 --> 05:39:17,560 THANK YOU TO ALL OF YOU FOR YOUR 10198 05:39:17,560 --> 05:39:20,480 REALLY ENGAGED PARTICIPATION. 10199 05:39:20,480 --> 05:39:21,680 WE VERY MUCH APPRECIATED HEARING 10200 05:39:21,680 --> 05:39:23,360 FROM EVERY SINGLE PERSON, 10201 05:39:23,360 --> 05:39:26,240 INCLUDING ALL THE DIFFERENT 10202 05:39:26,240 --> 05:39:27,160 PUBLIC COMMENTERS, PANELISTS, 10203 05:39:27,160 --> 05:39:28,240 PRESENTERS AND THE MEMBERS OF 10204 05:39:28,240 --> 05:39:28,560 THE COMMITTEE. 10205 05:39:28,560 --> 05:39:30,960 SO THANK YOU SO MUCH. 10206 05:39:30,960 --> 05:39:31,560 WE LOOK FORWARD TO SEEING YOU 10207 05:39:31,560 --> 05:39:32,000 NEXT TIME. 10208 05:39:32,000 --> 05:39:34,040 >>LET ME ADD ONE FINAL THANK 10209 05:39:34,040 --> 05:39:34,920 YOU, WHICH OTHERS HAVE ALREADY 10210 05:39:34,920 --> 05:39:36,560 DONE, WHICH IS TO THANK YOU, 10211 05:39:36,560 --> 05:39:37,840 SUSAN, FOR YOUR FEARLESS 10212 05:39:37,840 --> 05:39:38,800 LEADERSHIP OF THIS ENDEAVOR. 10213 05:39:38,800 --> 05:39:41,440 WE'LL SEE YOU ALL HOPEFULLY IN 10214 05:39:41,440 --> 05:39:41,920 PERSON EARLY NEXT YEAR. 10215 05:39:41,920 --> 05:39:42,160 >>THANK YOU. 10216 05:39:42,160 --> 05:39:43,000 >>ALL RIGHT. 10217 05:39:43,000 --> 05:39:54,600 GOODBYE.