WELCOME TO THE MEETING OF THE INTERAGENCY AUTISM COORDINATING COMMITTEE. CAN WE CONFIRM WE'RE ON WEBCAST? THAT'S ALL UP AND RUNNING? I ASSUME SINCE NO ONE SAID NO, WE'RE GOING TO GO AHEAD. WE'LL START WITH ROLL CALL. ELECTRIC POWER, IS THERE SOMEONE THAT CAN HELP MR. MR. ROBESON WITH ELECTRIC POWER? WE FOUND IT. EXCELLENT. OKAY. MEAN TEAM SUSAN WILL GO WITH ROLL CALL PLEASE. >> LET'S START WITH THE ROLL CALL. WE HAVE JOSH GORDON. >> HERE. >> JUDITH COOPER. OR JIM BATTEY. >>ER HUE. >> DIANA BIANCHI. CINDY LAWLER FOR LINDA BIRNBAUM. >> HERE. >> JOCIE BRIGGS. >> HERE. >> FRANCIS COLLINS. RUTH ETZEL. >> HERE. >> TIFFANY FARCHIONE. MAYBE ON HER WAY. MELISSA HARRIS IS GOING TO BE ON THE PHONE. ARE YOU THERE, MELISSA? JENNIFER JOHNSON. >> HERE. >> ROBYN SCHULHOF FOR LA LAURA KAY GNAW. >> HERE. >> MEGHAN MOTT FOR WALTER KOROSHETZ. >> HERE. >> LAURA PINCOCK. >> HERE. >> STUART SHAPIRA. >> HERE. >> MELISSA SPENCER. >> HERE. >> LARRY WEXLER. >> HERE. >> NICOLE WILLIAMS. FOR STAND NIU. MAYBE ON HER WAY. DAVID AMARAL. >> HERE. >> JIM BALL. >> HERE. >> THANKS, JIM. SAMANTHA CRANE. MAYBE ON HER WAY. JERRY DAWSON. AMY GOODMAN. >> HERE. DAVID MANN DELL IS -- MANDELL IS NOT JOINING US TODAY. BRIAN PARNELL. >> HERE. >> KEVIN PELPHREY. >>ER HUE. >> LEWIS REICHARDT. ROB RING. MAYBE ON HIS WAY. JOHN ROBESON. >> I'M HERE. >> ALLISON SINGER. >> I'M HERE. >> JULIE TAYLOR. >> HERE. >> HAVE I MISSED ANY ALTERNATES OR ANYONE ELSE? ALL RIGHT. >> THANK YOU. ONCE AGAIN, WELCOME, EVERYBODY, COUPLE OF QUICK REMINDERS BEFORE WE START WHEN YOU SPEAK MAKE SURE TO PRESS THE BUTTON ON YOUR MICROPHONE, IT SHOULD LIKE UP RED WHEN YOU DO SO. WHEN YOU'RE DONE SPEAKING PRESS AGAIN BECAUSE THERE'S ONLY SO MANY MICS ACTIVE AT ANY GIVEN TIME. THE REASON WE WANT YOU TO SPEAK INTO THE MICROPHONE IS BECAUSE THIS IS WEBCAST FOR THE PUBLIC. IT'S REALLY WONDERFUL TO TALK TO YOU HERE AND WORKING TOGETHER WITH YOU DURING AUTISM AWARENESS MONTH WHICH AS YOU KNOW IS THE MONTH OF APRIL. AND I HOPE MANY OF YOU WERE ABLE TO MAKE THE EVENT LAST NIGHT WHICH I UNDERSTAND WENT VERY, VERY WELL. IT WAS VERY -- I WAS VERY SORRY TO MISS IT AND CATCH UP ON THE FILM WHICH -- IS IT LIVE NOW ON THE WEB? >> WE DO HAVE A LINK ON THE IACC WEBSITE THAT WILL BE ACTIVE UNTIL AUGUST 2017, ANYONE WITH VIEW THE MOVIE FOR FREE, SO WE ENCOURAGE YOU TO DO THAT. >> OTHER AUTISM AWARENESS THINGS TO BE WARE OF IS MYSELF AND DR. BIANCHI AND DR. PRICE, THE SECRETARY, HAVE WRITTEN OR ARE WRITING BLOG PIECES AROUND OUR EFFORTS IN AUTISM CARE AND RESEARCH. SO YOU CAN CHECK OUT THE RESPECTIVE WEBSITES. AND OUR WEBSITE NEMH AND THE IACC WEBSITE BECAUSE WE LINK TO IT, IS THAT CORRECT? >> THE IACC HAS AN AUTISM AWARENESS WEB PAGE AND WE HAVE THE BLOGS LISTED THERE AND THE NEW ONES COMING WILL BE LISTED AS SOON AS POSSIBLE. >> THANK YOU ALL FOR COMING IN THE CONTEXT OF THIS BUSY MONTH. I ALSO WANT TO WELCOME SPECIAL GUESTS IN ATTENDANCE TODAY. FIRST DR. TOM NOVOTNY, DEPUTY ASSISTANT SECRETARY OF HEALTH WHO WILL SPEAK TO US RIGHT AWAY, EARLY IN THE PROGRAM. MS. JENNIFER SHEHI OFFICE OF DISABILITY EMPLOYMENT POLICY. IS SHE HERE? SHE'LL BE HERE LATER. SPEAKING TO US. IN THE U.S. DEPARTMENT OF LABOR I SHOULD MENTION. THEN THE HONORABLE MIKE LAKE WHO IS IN THE CANADIAN MINISTER PARLIAMENT WHO IS ALSO GOING TO BE ADDRESSING US LATER TODAY. AND WHOM WE MET LAST NIGHT AT THE DINNER FOR THE EVENT AND IT WAS WONDERFUL TO SPEAK WITH HIM. I ALSO WANT TO WELCOME A NEW COMMITTEE MEMBER. MS. MELISSA SPENCER. I FORGET WHERE SHE IS. THERE SHE IS. VERY GOOD. THANK YOU. AND MS. SPENCER REPRESENTS A NEW AGENCY AT THE TABLE, ONE WHICH WE'RE VERY PLEASED TO HAVE. SHE'S DEPUTY ASSOCIATE COMMISSIONER OF THE OFFICE OF DISABILITY POLICY AT THE SOCIAL SECURITY ADMINISTRATION. ESPECIALLY WITH THE GROWING INTEREST IN SERVICES FOR ADULTS IN THIS GROUP, WE'RE PLEASED TO WELCOME HER AND ALSO OF COURSE SERVICES FOR CHILDREN. I ALSO WANT TO MENTION THAT DR. ROB RING, WHO I DON'T THINK IS HERE JUST YET, HAS CHANGED AFFILIATIONS AND HE'S NOW CEO OF VENS VENCERX THERAPEUTICS. SO MAYBE WE CAN HAVE MS. SPENCER, IF YOU CAN SAY A LITTLE SOMETHING ABOUT YOUR AGENCY AND WHAT BRINGS YOU TO THE TABLE. >> WE SERVE A LOT OF INDIVIDUALS WITH AUTISM SPECTRUM DISORDER, BOTH EVALUATING ADULTS AND CHILDHOOD CLAIMS FOR DISABILITY BENEFITS. WHILE WE'RE A BENEFITS PAYING ORGANIZATION WE'RE ALSO VERY INTERESTED IN EMPLOYMENT OPPORTUNITIES AND TRANSITION OPPORTUNITIES FOR TEENAGERS AND GETTING MORE INTO THAT WITH DEMONSTRATION PROJECTS ESPECIALLY FOR THE ADULT POPULATION OF DISABLED INDIVIDUALS. I THINK I'M SCHEDULED TO SPEAK A LITTLE BIT AND I WILL TELL YOU ABOUT SOME OF THE CRITERIA WE HAVE IN SOME OF OUR DEMONSTRATION PROJECTS. >> OKAY. NOW I WILL TUSH IT BACK OVER TO -- TURN IT BACK OVER TO SUSAN FOR ANNOUNCEMENTS AND APPROVAL OF THE MINUTES. >> OKAY. I THINK I'M GOING TO ADD THE ANNOUNCEMENTS ACTUALLY IN MY COMMITTEE BUSINESS SECTION SO I WILL GO AHEAD WITH APPROVAL OF THE MINUTES. Y'ALL HAVE A COPY OF THE DRAFT MINUTES FROM THE LAST IACC MEETING AND I WANTED TO KNOW IF THERE ARE ANY COMMENTS ON THOSE MINUTES? I DON'T THINK I RECEIVED ANYTHING BY EMAIL. AND IF NOT, CAN WE HAVE A MOTION TO ACCEPT THE MINUTES? (OFF MIC) >> SECOND IN? ALL IN FAVOR OF ACCEPTING THE MINUTES AS WRITTEN? >> AYE. >> ANY OPPOSED? ANY ABSTAINING? BASED ON I DIDN'T SEE LIKE ALL THE HANDS BUT LOOKED LIKE WE ACCEPTED THE MINUTES. SO WE'RE GOING TO GET THOSE INTO THE RECORD AND WILL BE ON THE WEBSITE SHORTLY. >> NEXT WE'LL HAVE AN UPDATE FOR -- FROM DR. NOVOTNY FROM THE OFFICE OF THE NATIONAL AUTISM COORDINATOR IN THE DEPARTMENT OF HEALTH AND HUMAN SERVICES. >> GOOD MORNING, GREAT TO BE BACK HERE AT THE COMMITTEE MEETING AND SEE FAMILIAR FACES NOW PEOPLE MORE FAMILIAR TO ME WHICH IS A GOOD SIGN I THINK. I ALSO WANT TO SHARE IN THE WELCOME OF MELISSA SPENCER WHO NOT ONLY JOINED THIS COMMITTEE BUT WORKED WAS ON THE REPORT WE HAVE BEEN TALK ABOUT FOR SOME TIME NOW WHICH IS COMPLETED IN TERMS OF ITS DRAFTING BUT THIS IS A PROCESS THAT AS YOU KNOW WITHIN GOVERNMENT TAKES SOME TIME TO PROGRESS THROUGH VARIOUS LAYERS OF REVIEW, MAKES IT A LOT BETTER PRODUCT AT THE END BUT IT DOES TAKE SOME TIME. WE DON'T HAVE -- I WAS REALLY HOPING TO GET OUT THIS MONTH BUT WE DON'T HAVE A DATE YET FOR THE REPORT -- RELEASE. AND BUT WHAT I WANT TO TELL YOU IS THAT WE -- IN REINFORCE THAT WE ENJOYED A VERY GOOD PROCESS OF INTERAGENCY COLLABORATION, NOT JUST ACROSS HHS BUT WITH OTHER AGENCIES SUCH AS THE DEPARTMENT OF DEFENSE, DEPARTMENT OF LABOR, DEPARTMENT OF EDUCATION, LARRY WEXLER HAS BEEN A GREAT ALLY IN THE PRODUCTION OF THE MATERIAL. I THINK WE HAVE ACCOMPLISHED SOMETHING JUST BY VIRTUE OF THAT PROCESS OF GETTING PEOPLE TO COMMUNICATE AND TO IDENTIFY WHERE THE ACTIONS LIE WITHIN THE FEDERAL GOVERNMENT. AT THE SAME TIME WE ALSO INVITED MANY OF YOU TO PARTICIPATE IN LISTENING SESSION THAT WE HAD TOWARDS THE END OF OUR PRODUCTION PROCESS AND WE'RE ABLE TO INCORPORATE NOT ONLY THOSE PIECES OF INPUT, THOSE GREAT CONTRIBUTIONS AND SORT OF INSIGHTS BUT ALSO THOSE OF THE GAO WHICH AS YOU KNOW HAS BEEN WRITING A REPORT AT THE REQUEST NOW I UNDERSTAND OF REPRESENTATIVE SMITH ALSO ON THE TRANSITION PERIOD. AND I DON'T THINK THERE'S GOING TO BE MUCH IN THE WAY OF INCOMPATIBILITY OF THOSE REPORTS. IN FACT, NOT REALLY ANY. THE -- AS WELL IACC HAS BEEN GETTING PUBLIC COMMENTS THAT WE WERE ABLE TO REVIEW AND INCORPORATE INTO THE PERSPECTIVES THAT WE TRY TO PUT FORWARD. SO I THINK THAT UMS I CAN'T SHARE IT TODAY, WE HOPED TO DO THAT BIT'S ON ITS WAY AND WE HAD A BRIEFING ON THE HILL ON THE MONDAY AT THE INVITATION OF AUTISM SPEAKS. I HAVE TO THANK THEM FOR INVITING ME IN PANNED ADVOCATES AND ACADEMICS TO PRESENT ON AUTISM ISSUES RELATED ESPECIALLY TO TRANSITION ON THE HILL. REPRESENTATIVE SMITH VISITED AND HAD SOMEHOW CAN I SAY, INTENSE COMMENTS FOR HHS BUT WE APPRECIATE THE INTEREST AND ISSUES AND WE LOOK FORWARD TO CONTINUING TO WORK WITH HIM AS WE GO FORWARD. SO I DON'T HAVE A LOT MORE TO SAY EXCEPT THAT I'M GLAD TO BE SEEING SO MUCH PROGRESS AND REVIEW OF THE STRATEGIC PLAN AND THE SUMMARY OF ADVANCES. JUST A LOT OF STUFF GOING ON AND I THINK IT'S WORTHY OF THE AUTISM AWARENESS MONTH ACTIVITIES THROUGHOUT, WE PUBLISHED A BLOG AT THE BEGINNING OF THE MONTH THAT SECRETARY PRICE CALLED OUT AND HE'S NOW GOT A BLOG COMING SHORTLY AS WELL SO WE'RE GLAD HE'S TAKEN AN INTEREST IN THIS ISSUE AS WELL. THANK YOU. >> THANKS, TOM, A QUICK COMMENT TO SAY THE PROCESS WE HAVE BEEN USING FOR THIS TRANSITION REPORT HAS BEEN REALLY HELPFUL TO US IN THE OARC AS WELL AS WE TRY TO USE THIS OPPORTUNITY TO MAKE A BRIDGE BETWEEN THAT TRANSITION GROUP, THE INTERNAL WORKING GROUP AND THE IACC SO I HAVE BEEN SHARING IACC INFORMATION WITH THEM LIKE THE COMMENTS WE COLLECTED FOR THE STRATEGIC PLAN AND I THINK THIS REPORT WILL DEFINITELY BE BRINGING IT TO THE IACC AND HOPEFULLY WILL INFORM US AND IT'S GIVEN US A FEW NEW CONNECTIONS FOR EXAMPLE WITH SOCIAL SECURITY ADMINISTRATION. THAT CONTRIBUTED TO BEING ABLE TO IDENTIFY SOMEONE TO SERVE IN THAT AGENCY. TERRIFIC, WE APPRECIATE HAVING THEM, MELISSA. THANKS. >> THANK YOU, DR. NOVOTNY. NOW IT'S MY PLEASURE TO INTRODUCE THE HONORABLE MIKE LAKE, A CANADIAN MEMBER OF PARLIAMENT BUT HE'S HERE TODAY MORE IN THE CAPACITY OF BEING ONE OF CANADA'S AND REALLY THE WORLD'S LEADING AUTISM AND DISABILITY ADVOCATES. MIKE IS THE FATHER OF A SON, JADEN THAT WE HEARD A LOT ABOUT LAST NIGHT AND WILL HEAR MORE ABOUT NOW ANT AUTISM SPECTRUM AND HE'S HERE TO GIVE US A SPECIAL MESSAGE IN RECOGNITION OF WORLD AUTISM AWARENESS DAY WHICH TOOK PLACE APRIL 2ND AS WELL AS AUTISM AWARENESS MONTH. THANKS, MIKE. LOOK FORWARD TO WHAT YOU HAVE TO SAY AND SHOW. >> THANK YOU, ALL FOR HAVING ME. GREAT TO COME HERE, COME DOWN FROM CANADA AND COME INTO A ROOM LIKE THIS AND SEE QUITE A FEW FRIENDS HERE, PEOPLE THAT I MET OVER TIME AND TO BE PART OF WHAT YOU'RE DOING. LAST NIGHT WAS AN ABSOLUTELY FANTASTIC EVENT THAT THE FILM WE GOT A CHANCE TO SEE LAST NIGHT IF YOU HAVEN'T HAD A CHANCE TO SEE IT, IT'S PHENOMENAL. AS MENTIONED, I'M A CONSERVATIVE MEMBER OF PARLIAMENT FROM CANADA WHICH IS INTERESTING BECAUSE I SAY THAT PUTS ME HALFWAY BETWEEN YOUR PARTIES HERE IN THE U.S. OR AT LEAST UP UNTIL THE LAST YEAR I ALWAYS SAID THAT, NOW I DON'T KNOW WHERE I STAND COMPARED TO THE POLITICS DOWN HERE. BUT I AM MEMBER OF PARLIAMENT AND HAVE BEEN FOR 11 YEARS. A LOT OF WHAT I DO RELATES TO AUTISM, THIS IS A SORT OF PLATFORM YOU GET AS ELECTED PERSON AND I AM FORTUNATE ENOUGH TO REPRESENT AN AREA WHERE THE SEAT IS FAIRLY SAFE FOR ME AND MY CONSTITUENTS ARE PRETTY FANTASTIC IN TERMS OF ALLOWING ME TO DO THIS EXTRA WORK THAT I DO ON AUTISM AND I'M GOING TO -- IN MY PRESENTATION NORMALLY, NORMALLY THE GOAL OF MY PRESENTATION WHEN I'M SPEAKING IS TO EDUCATE PEOPLE ABOUT AUTISM. I DON'T THINK I HAVE TO DO THAT TOO MUCH IN THIS ROOM. OFTEN TIME IT IS PRESENTATION I'M ABOUT TO SHOW YOU IS A PRESENTATION THAT I'M PRESENTING TO BETWEEN 400 AND 1300 UNIVERSITY STUDENTS IN A PSYCH CLASS OR TEACHERS CONVENTION MEETING OF DOCTORS OR NURSES OF SOME SORT. AND SO THAT'S A BIG PART OF WHAT WE'RE TRYING TO DO. ALSO CHANGE THE WAY PEOPLE GENERALLY THINK ABOUT THE PEOPLE AROUND THEM, ALL THE PEOPLE AROUND THEM. AND IT'S GOING TO HAVE SIX VIDEOS THAT ARE PART OF IT, I GOT AN HOUR IN TOTAL PRESENTATION NORMALLY TAKES ABOUT 40 MINUTES AND BE GLAD TO TAKE SOME QUESTIONS FROM YOU. AFTERWARDS. IN SOME SPOTS I EXPLAIN AUTISM MAYBE I'LL EXPLAIN THE OTHER THINGS WE'RE DOING NOW TO MOVE THE BALL FOR FAMILIES LIVING WITH AUTISM. BUT THE FIRST THING I WILL SHOW YOU IS VIDEO JADEN IS 21 YEARS OLD NOW AND HIS MOM AND I HAVE BEEN APART FOR SEVERAL YEARS FOR THREE OR FOUR YEARS NOW. AND SO WHEN I HANG OUT WITH MY KIDS I HAVE A 17-YEAR-OLD DAUGHTER AS WELL, OFTENTIMES WE'RE DRIVING IN THE CAR SOMEWHERE, LISTENING TO MUSIC, THOSE KINDS OF THINGS OR HANGING OUT/AT MY PLACE AND WATCHING VIDEOS. IN ONE OF THOSE MOMENTS MY DAUGHTER PULLED OUT HER iPHONE AND DECIDED TO TAKE THIS VIDEO OF JADEN AND I DOING SOMETHING THAT WE HAVE DONE SINCE I WAS A BABY REALLY. IT'S A SONG THAT I HAVE SUNG TO HIM SINCE HE WAS A BABY. AND JUST RECENTLY IN THE LAST YEAR, JUST OVER A YEAR, HE STARTED TO IN HIS OWN WAY SANG BACK WHICH YOU WILL SEE IN THE VIDEO. THIS IS NEW AS OF THE LAST YEAR OR TWO. AND WHEN WE -- JADEN HAS THIS AMAZING ABILITY WE WERE TALKING ABOUT YESTERDAY TO CONNECT WITH PEOPLE. YOU WILL PICK IT UP OFF THE BAT, WHEN WE SHARED THIS VIDEO ON FACEBOOK WITHIN A WEEK IT HAS 1.4 MILLION VIEWS OF A 35 SECOND SONG. THE WORDS SO YOU KNOW IF YOU CAN'T HEAR IN THE VIDEO, THINK OF CONTEXT I WORKED FOR THE EDMONTON OILERS BEFORE I GOT ELECTED FOR TEN YEARS SO JADEN'S WHOLE LIFE I WORKED IN EITHER A JOB THAT HAD ME TRAVELING A LOT OR A JOB THAT HAD ME AWAY A LOT OF NIGHTS SO I WOULD SING THIS SONG OF HIM, THINK OF ME EVERY DAY, HOLD TIGHT TO WHAT I SAY AND I'LL BE CLOSE TO YOU EVEN FROM FAR AWAY. KNOW WHEREVER YOU ARE IT IS NEVER TOO FAR WHEN YOU THINK OF ME I'LL BE YOU. SO WHEN WE SANG THIS SON, JENEE CAPTURED IT. THIS IS MAY OF LAST YEAR. >> READY? * * * >> GOOD JOB. THAT WAS NICE. >> YOU CAN SEE HE AGREES IT'S NICE. HE STARTS WHEN I START, FINISHES WHEN HE FINISHES. THE FIRST TIME I NOTICED WAS WITH THE NATIONAL ANTHEM. BUT IF YOU'RE IN PUBLIC SINGING THE NATIONAL ANTHEM HERE, PEOPLE TAKE THAT SERIOUSLY AND THE FIRST RESPONSE PEOPLE HAVE IS THEY'RE LOOKING AROUND TO FIGURE OUT WHICH KID IS FOOLING AROUND DURING THE NATIONAL ANTHEM BUT QUICKLY AS PEOPLE REALIZE THAT IT'S A LITTLE BIT DIFFERENT, THEY'LL -- THEY RESPOND DIFFERENTLY. IT'S INTERESTING ON THE COMMENTS WHEN I POSTED THIS ON MY FACEBOOK PAGE ONE FIRST COMMENT I GOT WAS SOMEONE ON THE SPECTRUM AND IT WAS WOW YOU HAVE A LOT OF REMOTES. THERE'S EIGHT REMOTES THERE. BUT THAT GIVES YOU A LITTLE BIT OF A PICTURE OF JADEN. THE REST OF THE VIDEOS GO IN CHRONOLOGICAL ORDER AND I WILL JUMP INTO THE NEXT VIDEO PRETTY QUICKLY. THIS GOES BACK TO 2010. AND IT WAS WORLD AUTISM AWARENESS DAY AND WE DO A LOT OF INTERVIEWS TO RAISE AWARENESS OF AUTISM. AND SO WE HAD THIS OPPORTUNITY IN 2010 TO DO A LIVE INTERVIEW. THIS IS NERVE WRACKING BECAUSE IT'S UNPREDICTABLE SO I SAID TO THE REPORTER THAT WAS GOING TO DO THIS INTERVIEW IN THE FOYER OF THE HOUSE OF COMMONS, THIS STONE BUILDING, VERY ECHOY AND THERE'S LOTS GOING ON. I SAID TO THE REPORTER, WHATEVER HAPPENS LET'S JUST GO WITH IT BECAUSE IT WAS THE FIRST TIME LIVE. JADEN WAS I BELIEVE 14 AT THE TIME WE DID THIS INTERVIEW. AND SURE ENOUGH, THE REPORTER JUST BEFORE WE WENT LIVE SAID MIKE, THANKS FOR CHANGING YOUR TRAVEL PLANS TO BE HERE TODAY AND JADEN IS OBSESSED WITH TRAVEL AND OBSESSED WITH SCHEDULES OR PLANS AND THIS WAS THE RESULT OF THAT QUESTION. >> WELCOME BACK TO POWER PLAY. I'M TOM CLARK. THERE'S A NUMBER OF IS THE STORIES AROUND THIS PLACE THAT RARELY GET TO PAPERS. WE'LL INTERVIEW NOW ONE OF THEM. MIKE LAKE, MEMBER OF PARLIAMENT AND HIS SON JADEN. MIKE HAS BEEN A CHAMPION OF THE CAUSE TO FIND CURE FOR AUTISM. AS YOU CAN TELL, JADEN SUFFERS FROM AUTISM. >> I'LL EXPLAIN. A LITTLE EXPLANATION I MENTIONED WE SWITCHED FROM TAKING A TRAIN WHICH WE WERE GOING TO TAKE TO TA PLANE WHEN WE DECIDED TO GO ON THE SHOW. HE IS VERY TIED TO HIS SCHEDULE AND LIKES TO KNOW EXACTLY WHAT'S GOING ON SO I MADE THE MISTAKE OF MENTIONING THAT TO YOU AS WE WERE STARTING THE INTERVIEW AND JADEN CAUGHT ON AND WANTS TO HEAR MORE ABOUT IT. >> TELL ME SOMETHING, MIKE, ABOUT WHAT IT'S LIKE BRINGING UP JADEN IN YOUR FAMILY AND WHAT THAT'S MEANT TO YOU? >> I WILL EXPLAIN, WE'LL TAKE AT 7 O'CLOCK WE'RE GOING THE TAKE A PLANE RIDE AT 7 O'CLOCK. WHAT IT'S LIKE IS AMAZING KID. WE GO THROUGH MOMENTS LIKE THIS, AND IT'S UNSCRIPTED, THIS IS WHY KIDS WITH AUTISM TRYING TO GET ACROSS WHAT AUTISM IS, IS TO TAKE THEIR CHILD AND LEAD THEIR ELECTED OFFICIALS MEMBERS OF PARLIAMENT, MLAs, DON'T BE AFRAID, THIS IS REAL LIFE EXAMPLE, DON'T BE AFRAID OF TAKING YOUR CHILD IN TO MEET THEM. THEY SAY WHAT IF MY CHILD ACTS UP, WHAT AM I SUPPOSED TO DO TO EXPLAIN? I SAY IF YOUR CHILD ACTS UP LIKE HE OR SHE HAS AUTISM, YOU EXPLAINED IT BETTER THAN YOU CAN EXPLAIN WITH WORDS. >> FROM DON'T HIDE THEM. >> EXACTLY. >> SO ONE OF THE THINGS THAT I ALWAYS HAVE TO EXPLAIN AFTER THAT INTERVIEW IS REMEMBERING THAT INTERVIEW IS SEVEN YEARS OLD IS THERE'S TERMINOLOGY HE USES IN THAT INTERVIEW THAT WE DON'T USE ANY MORE AND HE TALKS ABOUT CURING AUTISM, WE DON'T TALK ABOUT CURING AUTISM. WE ALSO DON'T TALK ABOUT JADEN SUFFERING WITH AUTISM, JADEN DOESN'T SUFFER WITH AUTISM. THERE ARE CHALLENGES CERTAINLY, ABSOLUTELY. AND BUT THERE ARE ALSO SKILLS AN ABILITIES AND STRENGTHS HE HAS BECAUSE OF THAT. AND YOU HAVE TO REMEMBR THE CONTEXT IS SEVEN YEARS AGO IF ANYONE WANTS TO GIVE TOM A HARD TIME, HE'S TRYING TO -- WE HAVE TO REALIZE THAT'S WHAT HE'S TRYING TO DO WITH HIS NOT HAVING LIVED IT DOING IT IN FAIRLY DIFFICULT CIRCUMSTANCE IN A LIVE INTERVIEW. AND WE HAD A GREAT CONVERSATION LAST NIGHT WITH ALLISON AND JOHN AND DEANNA ABOUT THE RANGE. AND THE SPECTRUM THAT AUTISM IS AND OF COURSE I DON'T HAVE TO EXPLAIN TO YOU WHEN YOU'RE SEEING JADEN UP HERE YOU SEE ONE PART OF THE SPECTRUM BUT I HAVE TO EXPLAIN TO OTHERS THAT THERE ARE PEOPLE WITH DIFFERENT CHALLENGES AND SKILLS AND ABILITIES THAT THE HIGH END OF THE SPECTRUM AND THE LOWER END OF THE SPECTRUM PEOPLE WITH PROFOUND CHALLENGES WE DON'T DEAL WITH JADEN AND IT'S PARENT TO MAKE SURE WE REPRESENT THE ENTIRE SPECTRUM WHEN TALKING ABOUT THAT. THE NEXT INTERVIEW OR NEXT STORY I'M GOING TO SHOW YOU, THIS QUOTE IS VERY SPECIFIC TO THAT THIS IS FANTASTIC ADVICE FROM MARGARET THATCHER THAT WE DON'T ALWAYS WEAR THE LOOK ON OUR FACE WE SAY AT THE MOMENT OR SAYING WHAT'S ON OUR MIND, WE DON'T ALWAYS WEAR OUR HEART ON OUR SLEEVE BUT JADEN ALWAYS WEARS HIS HEART ON HIS SLEEVE. HE'S HAPPY HE SMILES, IF HE'S SAD HE CRIES. HE HAS A HARD TIME THE STORY IS THAT EVERY YEAR I DO AN AUTISM STATEMENT, THE HOUSE HAS DONE AWE TESTIMONY STATEMENT IN 2012 BOB WRIGHT SAW IT AND SUZANNE SAW IT AND THEY WANTED ME TO SPEAK AT THE UN EVENT IN SEPTEMBER IN 2012. JADEN DID KEYNOTE ADDRESS TO THE SPOUSE OF WORLD LEADERS AT THIS EVENT AND ONE PIECE OF MEDIA AROUND IT AND THE CONTEXT WHEN YOU SEE JADEN YOU'RE SEEING VERY DIFFERENT THAN OTHER VIDEOS. HE'S OBVIOUSLY OFF. WE WOKE UP AT FOUR O'CLOCK THAT MORNING. WE TOSSED JADEN IN A SUIT IN OTTAWA, HE WASN'T USED TO WEARING OFTEN. WE HOPPED IN A CAB, WENT TO THE AIRPORT, WHEN WE GOT TO THE AIRPORT WE ENCOUNTERED -- WE WERE COMING THAT DIRECTION YOU HAVE TO GO THROUGH CUSTOMS IN CANADA SO WE WENT THROUGH THE CUSTOMS PROCESS. HOPPED ON A PLANE, FLU TO NEW YORK CITY, HOPPED ON ANOTHER CAB AND RAISED TO YOU ARE EVENT WE DID A MEDIA INTERVIEW WITH OUR NATIONAL NEWS OUTLET FROM CANADA THERE TO COVER IT AND THEN THIS STORY WITH CNN. SO IT'S TEN O'CLOCK IN THE MORNING AND THAT'S JADEN'S DAY SO FAR AND JADEN DOESN'T DO MORNINGS VERY WELL, HE DOES THE REST MUCH BETTER BUT HE'S ANXIOUS IN THE MORNING. AND I LOVE THIS VIDEO AS PART OF THE PRESENTATION BECAUSE IT ALLOWS ME TO TALK ABOUT THE FACT WITH JADEN YOU HAVE TO READ FACIAL EXPRESSIONS, HE WON'T -- HE CAN'T EXPLAIN WHAT HE FEELS LIKE AND SO YOU GOT TO READ HIS EYES. YOU HAVE TO READ HIS SKIN TONE. YOU HAVE TO SORT OF READ HIS BODY LANGUAGE AND THINGS LIKE THAT AND NOTICE THAT HALFWAY THROUGH IN DIFFERENT PARTS OF THE VIDEO EDITED WE'RE PLAYING CATCH WITH A FOOTBALL, BECAUSE AT THAT TIME FOOTBALL WAS VERY THERAPEUTIC SO WHAT WE DID IS CALL A TIME OUT IN THE MIDDLE OF THE INTERVIEW AND GRABBED THE FOOTBALL AND THROW THE FOOTBALL, HE LOVES THE FEEL AND SMELL OF THE FOOTBALL, HE LOVES THE MOTION OF THROWING IT BACK AND FORTH. HE LOVES THE COUNTING WHERE YOU CANNOT HEAR HERE BUT HE LOVE IT IS THE COUNTING AS WE THROW BACK AND FORTH. JADEN CAN'T MIMIC EVERYTHING I ALWAYS FIND FUNNY WHAT HE CAN'T AND CAN'T MIMIC. IF I MIX HIM UP AND THROW IT BLIND MY BACK TO HIM, HIS VERSION OF THAT, I THINK HE THINKS HE'S DOING IT THE SAME WAY, HIS VERSION OF THAT IS TO GO LIKE THIS AND THEN THROW IT FORWARD SAME WAY. I FIND THAT INTERESTING, YOU DON'T SEE IT IN THE VIDEO BUT THIS IS JADEN AS A 16-YEAR-OLD ON CNN IN I THINK ABOUT 2012. >> 16-YEAR-OLD JADEN LAKE THAT HAS AUTISM. >> WHEN HE WAS 11 I REMEMBER MY WIFE PHONING ME SAYING JADEN JUST KISSED ME FOR THE FIRST TIME, JADEN CAN YOU GIVE ME A KISS ON THE CHEEK? TOOK HIM UNTIL HE WAS 11 YEARS OLD. LET'S DO IT AGAIN. >> HE'S SON OF MIKE LAKE, A COMPANY MP IN NEW YORK THIS WEEK TO RAISE AWARENESS ABOUT THE DISORDER WHICH AFFECTS ONE OF EVERY # 8 CHILDREN IN THE UNITED STATES. >> HE DOESN'T KNOW HOW TO BE MEAN TO ANYBODY. HE DOESN'T KNOW WHAT BULLYING IS. HE DOESN'T KNOW WHEN PEOPLE ARE BEING MEAN TO HIM. >> IN THE SHADOW OF THE UNITED NATIONS GENERAL ASSEMBLY, SPOUSES OF LEADERS FROM -- 15 COUNTRIES GATHERED TO TALK ABOUT HOW AUTISM IS A PRESSING THREAT TO GLOBAL HEALTH. >> SOME COUNTRIES LIKE MINE DON'T KNOW ANYTHING ABOUT AUTISM AND HOW IT'S AFFECTING THE CHILDREN OF THE WORLD. >> THE DISORDER MOST OFTEN TARGETS BOYS AND IT'S OVERALL NUMBERS HAVE BEEN GOING UP. >> WHAT ARE YOU THINKING ABOUT RIGHT NOW? WHAT ARE YOU THINKING ABOUT RIGHT NOW? FOOTBALL PROBABLY. RIGHT? >> WHETHER THE RIDES IN PREVALENCE IS DUE TO BETTER REPORTING OR REFLECTS AN ACTUAL INCREASE ISN'T CLEAR. JUST AS MYSTERIOUS, IT'S CAUSE AND WHETHER IT CAN BE CURED. >> >> WHEN HE STARTS LAUGHING IT'S ONE OF THE MOST INCREDIBLE SOUNDS IN THE WORLD WHEN HE GETS THE GIGGLES. AND YOU'LL LOOK AT HIM. YOU KNOW IT TOO, RIGHT? YOU KNOW WE LOVE IT AND JUST LOOK AT HIM AND GO WHAT'S SO FUNNY? IT'S A MYSTERY BECAUSE I HAVE NO IDEA WHAT'S MAKING HIM LAUGH AT THE TIME. >> PEOPLE LIKE LAKE SAY EARLY DETECTION IS KEY AND IT'S IMPORTANT TO RECOGNIZE THERE ARE WAYS TO HELP. HIS SON COOKS AND WORKS IN A LIBRARY. >> HE'S VERY GOOD AT SORTING THE BOOKS, HE LOVES TOE YOU LIKE THE LIBRARY, SCAN THE BOOKS ON THE COMPUTER AND PUT THEM -- SORT INTO PILES AND THEN RUN THEM OUT AND PUT THEM ON THE SHELVES, RIGHT? >> DAVID, C NORTH CAROLINA NEW YORK. -- CNN, NEW YORK. >> SO YOU CAN SEE THE EXPRESSION ON HIS FACE, HOW DIFFERENT IT IS THAN WHAT IT SOMETIMES IS IN VIDEOS. JADEN HAS A TOUGH TIME WITH THE ABSTRACT AND THIS IS A KEY PART WHEN YOU'RE THINKING ABOUT THE CHALLENGES AND THINKING ABOUT ALL THE OPPORTUNITIES AND SKILLS AND ABILITIES WHICH IS A LOT OF THE REST OF MY PRESENTATION. DEALING WITH SOME OF THE CHALLENGES THAT JADEN HAS IS CRITICAL IF HE'S GOING TO BE ABLE TO ACHIEVE HIS FULL POTENTIAL. JADEN HAS NO COMPREHENSION WHATSOEVER OF DANGER. NONE AT ALL. IT IS WAY TOO ABSTRACT FOR HIM. SO HE LOVES DOGS AND HE WILL, IF HE SEES A GERMAN SHEPHERD ACROSS THE ROOM, THAT WOULD BE WEIRD BUT ACROSS THE FIELD, THAT WE WERE IN, AND DECIDES THAT HE WANTS TO GO SEE THAT GERMAN SHEPHERD, HE WILL RUN TO IT, COMPLETELY STRANGE DOG, SQUEALING AS LOUDLY AS HE CAN WITH A HUGE SMILE ON HIS FACE, AND IF HE WAS ABLE TO GET TO THE DOG WHICH THANKFULLY HE HASN'T BEEN YET, HE WOULD REACH FOR THE SQUISHEST PARTS BECAUSE HE LOVE THAT PARTS FROM THE DOG BECAUSE FROM A SENSORY STAND POINT IT FEELS GOOD TO HIM, HE LOVES THE SMELL AND BREATH, SO HE MODALLY STICK HIS FACE IN THE FACE OF THE DOG. HE LOVES THE BIGGER DOGS BEST. SO THAT'S SOMETHING THAT YOU ALWAYS HAVE TO BE AWARE OF. TRAFFIC IS A ABSOLUTE NIGHTMARE FOR JADEN. HE HAS A VISUAL MEMORY, HE KNOWS EVERYWHERE HE WANTS TO GO, I THINK THE REASON WE WERE ABLE TO GET HIM AN AID, A FULL TIME AID IN SCHOOL IS BECAUSE I REMEMBER HAVING A CONVERSATION WITH A PRINCIPAL WHO DIDN'T WANT TO SPEND THE MONEY OF A FULL TIME AID AND HE BROUGHT UP THE COST AND I SAID WHAT WOULD IT COST, JADEN KNOWS WHERE THE SWIMMING POOL IS, AT THAT POINT IT WAS A NEW SCHOOL, JADEN WAS SEVEN. HE KNOWS EXACTLY WHERE IT IS. HE IF HE DECIDES HE WANTS TO GO HE'S GOING TO GO BECAUSE HE DOESN'T KNOW THAT HE CAN'T. BUT HE HAS NO CONCEPT OF TRAFFIC. HOW MUCH IS THAT GOING TO COST YOU IF JADEN WALKS OUT OF YOUR SCHOOL BECAUSE NO ONE IS WATCHING HIM? AND HE GOT A FULL TIME AID. SO BECAUSE I THINK EVERYBODY KIND OF REALIZED THAT WAS A CHALLENGE. JADEN CAN LOOK BOTH WAYS YOU CAN TEACH HIM TO LOOK BOTH WAYS. NUMBER ONE LOOK LEFT, NUMBER TWO LOOK RIGHT BUT NUMBER THREE HOW DO YOU TEACH THE ABSTRACT IDEA OF IS IT SAFE TO CROSS? HOW FAST ARE THOSE CARS GOING? HOW MUCH WOULD THAT CAR HURT IF IT HIT YOU? THOSE ARE THINGS THAT HE DOESN'T UNDERSTAND. SO THOSE CAN BE CHALLENGES. SOMETIMES SOME OF THESE THINGS CAN BE FUNNY AND THEY CREATE OPPORTUNITIES. JADEN IS LIKE MY SUPER SECRET WEAPON BECAUSE HE INTRODUCES ME TO PEOPLE IN STRANGE AND WONDERFUL WAYS. SOME OF THEM ARE VERY FUNNY. WE WERE AT MCDONALDS BETWEEN CHRISTMAS AND NEW YEARS ONE TIME, VERY BUSY MALL, DOZENS OF PEOPLE IN THE LINEUP AND JADEN WAS NINE, HE LOOKS LIKE ANY OTHER NINE-YEAR-OLD KID AT THAT TIME TIME AND HE SUDDENLY JUST STARTED LAUGHING AND I WAS CARRYING FOOD SO I WASN'T HOLDING HIS HAND BUT NORMALLY WOULD BE AND HE DID HIS HAPPY SQUEAL AND RUN AND HE RAN ALL THE WAY BEHIND THE COUNTER OF THIS MCDONALDS, PUSHING PEOPLE THE FULL LENGTH OF THE COUNTER PUSHING PEOPLE OUT OF HIS WAY AS HE WENT AND AT THIS POINT PEOPLE ARE GOING WHAT THE, WHATEVER THEY SAID. HE RUNS THE FULL LENGTH OF THE COUNTER REACHES TO THE BIN THEY HOLD THE CRUSHED SMARTIES LIKE M AND MS IN CANADA AND HE GRABS A HANDFUL AND SHOVES THEM IN HIS FACE AND HE HAS THIS RING OF CRUSHED SMARTIES AROUND HIS FACE AND THE BIGGEST SMILE YOU HAVE EVER SEEN, I LEAN OVER AND FINDS A MANAGER AND SAY HE HAS AUTISMTISM AND PUT MY HEAD DOWN, HE'S HAPPY, GOT WHAT HE WANTED AND HE COMES WITH ME. WHEN I WORKED FOR THE OILERS I TOOK HIM TO A GAME IT WAS SAME TIME NINE-YEAR-OLD, WE'RE SITTING IN THE SEATS WATCHING THE GAME. THE HOCKEY IS ON SO IT'S FAIRLY QUIET, NOT LIKE BASKETBALL WHERE THEY PLAY MUSIC WHILE IT'S ON, WE'RE WATCHING THE GAME AND SUDDENLY OUT NOWHERE, NO WARNING HE KIND OF SQUEALS HE'S HAPPY, HE REACHES OVER THE SHOULDER OF THE FIVE-YEAR-OLD GIRL IN FRONT OF HIM AND GRABS THE ICE CREAM OFF THE TOP OF HER CONE LIKE YOU WOULD GRAB A SNOWBALL AN STARTS EATING IT RIGHT OUT OF HIS HAND, IT'S DRIBBLING DOWN BETWEEN HIS FINGERS, AGAIN I TURN TO THE DAD AND SAID I'M SORRY >> HE HAS AUTISM. AND HE UNDERSTOOD. THE DAUGHTER DID NOT UNDERSTAND, THE FIVE-YEAR-OLD DIDN'T UNDERSTAND UNTIL WE GOT HER ANOTHER ICE CREAM AT THE INTERMISSION. BUT THAT'S LIFE WITH HIM. SOMETIMES IT CAN BE REALLY HELP. WHEN WE WERE AT THE NATIONAL GOVERNOR ASSOCIATION MEETINGS WHEN HE WAS 17 WE MET MARY FOUL LAND AND HAD DINNER WITH HER AND HAD A GREAT CONVERSATION AND JADEN REALLY HIT IT OFF WITH MARY AND SO LATER IN THE EVENING I SAID THERE'S MARY ACROSS THE -- IT WAS LIKE A TENT OUTDOORS IN THE SUMMER. AND FAIRLY WARM, I SAID GO SAY HI TO MARY. HE WOULD NORMALLY RUN AND GIVE HER A HUG BECAUSE THEY CONNECTED. BUT HE DIDN'T RUN TO MARY, HE RAN TO THE GUY SHE WAS TALKING TO WHO JADEN HAD NEVER MET AND THIS GUY BECAUSE IT WAS SUMMER AND IT WAS HOT HE HAD A SHIRT ON BUT NO TIE AND HIS SHIRT WAS UNBUTTONED DOWN ABOUT HERE AND JADEN LOVES TOUCH AND CONTACT AND SMELL AND HE APPARENTLY LOVED THIS GUYS COLOGNE. AND THROUGH HIS NECK INTO THIS -- THIS FACE INTO THIS GUY'S NECK AND STARTED SMELLING HIS NECK AND THEN KISSING HIS NECK. A COMPLETE STRANGER. HE'S HUGGING AND KISSING THIS STRANGER, HE'S 17, HE DOESN'T LOOK LIKE EVERY 17-YEAR-OLD BECAUSE HE'S FAIRLY SMALL, LOOKS LIKE EVERY 14-YEAR-OLD. RIGHT? AND I RAN OVER AND QUICKLY WILL EXPLAINED AGAIN BUT IT TURNED OUT I THINK HIS NAME WAS DAVID AGNEW, IS THAT FAMILIAR TO ANYBODY HERE? HE WAS OBAMA'S DIRECTOR OF INTERGOVERNMENTAL AFFAIRS OR SOMETHING LIKE THAT, A DIRECTOR IN THE WHITE HOUSE. WHEN I SAY JADEN IS MY SECRET WEAPON, HE TALKED HALF HOUR AN AUTISM AND PIPELINES. I'M FROM ALBERTA, PIPELINES ARE A BIG DEAL FOR US AND HAD A CONVERSATION I NEVER WOULD HAVE HAD IF HE HADN'T BROKEN THE ICE. I CAN'T TELL YOU HOW MANY TIMES JADEN IS MY ICE BREAKER. WALKING INTO A CROWD OF PEOPLE, 400 PEOPLE I DON'T KNOW AND HE WILL LEAD THE WAY BECAUSE HE'S SO EXCITED TO GIVING EVEN HIGH FIES AND AWFUL TO DO IS WALK AROUND IN THERE SMILING ALREADY AND I GET A CHANCE TO SHAKE THEIR HANDS AND SAY THIS IS MY SON JADEN AND I'M YOUR NEW MEMBER OF PARLIAMENT. IT'S FUN TO DO THAT WITH HIM. WE GET TO EXPERIENCE SOME PRETTY COOL THINGS THAT WAY. NORTHERLY I WOULD SHARE MY THREE INSIGHTS AND ELABORATE ON AUTISM THAT I WOULD WANT A ROOM FULL OF INTRO PSYCH STUDENTS TO PICK UP ON, I WILL TELL YOU BUT I WON'T GET INTO DETAIL BUT THE MILLIONS OF THINGS I COULD SAY ABOUT AUTISM, I WANT YOU TO KNOW EARLY INTERVENTION IS CRITICAL, ABSOLUTELY CRITICAL. EVIDENCE BASED EARLY INTERVENTION. I WANT THEM TO KNOW THAT TRANSITIONS ARE REALLY DIFFICULT AND REALLY, REALLY IMPORTANT AND WE HAVE TO CAREFULLY CONSIDER AL TRANSITIONS WHETHER FROM EARLY INTERVENTION PROGRAM TO SCHOOL, WHETHER IT'S FROM SCHOOL TO VOCATION. TRANSITIONS IN LIFE, JADEN WENT THROUGH SIGNIFICANT ANXIETY AT 13 LIKE LOTS OF KIDS DO. BUT BECAUSE HE COULDN'T EXPLAIN IT, OR ARTICULATE WHAT HE WAS FEELING, IT MANIFESTED ITSELF IN TREMENDOUS SADDENS AND SHAKING AND THINGS THAT TOOK HALF AN HOUR OF HOLDING HIM AS TIGHT AS I COULD OR HIS MOM COULD TO HELP HIM THROUGH. BUT THE BIG TRANSITION OF COURSE ROLLED ON AND YOU WONDER WHAT LIFE IS GOING TO LOOK LIKE FOR HIM WHEN WE'RE NOT THERE TO CARE FOR HIM ANY MORE. THAT'S NUMBER TWO I MAKE THE POINT ON. THE THIRD THING IS THAT WE NEED TO EXPECT MORE OF PEOPLE WITH AUTISM. VIRTUALLY ACROSS THE SPECTRUM WE EXPECT TOO LITTLE OF PEOPLE LIKE JADEN. THAT'S WHERE THE REST OF MY PRESENTATION GOES IS TALKING TALKING ABOUT THIS, THIS NEED TO EXPECT MORE, WHEN WE WERE 12, WHEN MOST PEOPLE IN THIS ROOM WERE 12 NOBODY LOOKED AT YOU AND SAID WHAT DO YOU LIKE TO DO? NOW WE'RE GOING TO SET YOU UP ON AN ENDLESS FIELD TRIP FOR THE REST OF YOUR LIFE DOING THAT THING THAT YOU LIKE TO DO. AND SOMEHOW SOMETIMES THAT'S HOW WE THINK OF INCLUSION. JUST ENDLESS FIELD TRIP DOING COOL STUFF WITH OREGON PEOPLE AND THINGS LIKE THAT. INCLUSION IS INCREDIBLY IMPORTANT AND HAS BEEN INCREDIBLY IMPORTANT FOR JADEN AS YOU WILL SEE IN THESE NEXT FEW VIDEOS BUT I WANT US TO MOVE BEYOND JUST INCLUSION, I WANT US TO THINK ABOUT CONTRIBUTION, WHAT DOES JADEN HAVE TO CONTRIBUTE? AND YOU WILL SEE A LITTLE BIT OF THAT AS I MOVE FORWARD IN THE CONVERSATION. THIS NEXT VIDEO I WILL PLAY WHEN JADEN WAS IN GRADE 10 THE STUDENTS IN HIS SCHOOL AND ONE OF THE CLASSES AND THEIR ONE OF THE TEACHERS THE MUSICAL THEATER TEACHER SAID THAT THEY HAD A CONVERSATION, SAID JADEN LOVES -- ELSE ALWAYS IN A REGULAR CLASSROOM, HE LOVES THE SOUND OF MUSIC. HE LOVES MUSIC IN GENERAL. HE LOVES MOVING AROUND AND THEY WOULD SORT OF HAVE HIM DO LITTLE DANCES AN THINGS LIKE THAT. WE THINK THAT THERE'S -- A MINIMAL ROLE THAT HE CAN PROBABLY PLAY IN A PLAY AND THEY DID THAT YEAR OLIVER. IN THAT YEAR THEY BASICALLY HAD JADEN IN TWO OF THE SCENES GROUP SCENES THEY DRESSED HIM LIKE EVERYBODY ELSE AND HE MILLED ABOUT. WHAT PEOPLE DIDN'T KNOW WATCHING IS THEY HAD TWO STUDENTS, ONE STUDENT POSTED ON EACH SIDE OF THE STAGE TO MAKE SURE JADEN DIDN'T LEAVE BECAUSE THAT WAS A RISK FOR HIM. THE SECOND YEAR THEY DID BUY BY BIRDY AND -- BYE-BYE BIRDY AND DECIDED TO TAKE IT UP A NOTCH AND GLOBAL TV IN EDMONTON CAME OUT AND DID THIS. >> DEBUTING BYE-BYE BIRDY IN JUST UNDER AN HOUR IN THE MUSICAL ROCK STAR NAMED CONRAD BIRDY IS THE FAN FAVORITE. BUT IN REAL LIFE IT'S JADEN LAKE, A NON-VERBAL STUDENT WITH AN IMPORTANT MESSAGE FOR HIS CAST MATES. WE EXPLAIN WHY. * >> THE CAST MEMBERS OF BYE-BYE BIRDY LOOSEN THEIR VOCAL CHORDS WITH A CLASSIC SCALE. * >> BUT THE REHEARSAL ISN'T COMPLETE WITHOUT ONE MORE EXERCISE, JADEN'S WARM UP. * THEY SING BAY, BAY, BAY, BECAUSE IT'S THE ONLY SOUND 17-YEAR-OLD JADEN MAKES. THE GRADE 11 STUDENT HAS AUTISM AND IS NON-VERBAL. >> LET'S FACE IT, INCLUDING A KID WITH AUTISM IN THE MUSICAL THEATER PERFORMANCE IS A RISK FOR THEM. EVERYBODY WANTS THAT PERFORMANCE TO BE PERFECT. AND WHEN YOU INCLUDE JADEN IN THERE YOU RUN THE RISK THAT HE'S GOING TO SQUEAL AT AN INOPPORTUNE TIME OR START TO WONDER OFF THE EDGE OF THE STAGE BECAUSE HE SEES SOMETHING INTERESTING. >> THAT HAS HAPPENED. YOU ONLY NEED TO SEE ONE NUMBER TO SEE JADEN IS LIKE ANY OTHER CAST MEMBER. * >> HE'S PERFORMING WITH THE HELP OF A BUDDY SYSTEM. >> WE HOLD HIS HAND TO GUIDE HIM, WHICH PLACE TO GO AND IF YOU -- GOING OFF SOMEWHERE, WE WATCH OVER HIM AND -- YEAH, HE'S LIKE A BROTHER. >> JADEN ALWAYS LOVED MUSIC. THE SOUND OF MUSIC IS ONE OF HIS FAVORITES. HE DOESN'T SING BUT HIS MOM SAYS MUSICAL THEATER PLAYS TO OTHER STRENGTHS. >> BECAUSE HE LOVES ROUTINE, YOU MEMORIZE A PATTERN HOW THEY TAKE HIM ON AND OFF STAGE, THAT MAKES HIM THRIVE, HE LOVES ORDER AND PATTERN. >> HIS VISUAL MEMORY IS SO STRONG CHOREOGRAPHERS KNOW ONCE THEY TEACH HIM CERTAIN STEP THEY CAN'T MAKE ANY CHANGES. >> WHATEVER YOU TEACH HIM YOU WON'T BE ABLE TO GO BACK AND SAY BY THE WAY CAN YOU NOW DO THIS. BECAUSE BECAUSE THAT FIRST THING WE TEACH IS WHAT STICKS IN HIS MIND. >> HIS PARENTS SEE IN HIM, HOW CONTENT HE IS BEING PART OF THE CAST. >> HE LOVES BEING PART OF A GROUP OF KIDS. EVERYBODY LIKES TO BE PART OF A GROUP EVEN IF THEY CAN'T VERBALIZE IT. >> JADEN IS ENHANCING HIS PIERCE PERFORMANCE TOO. Q. HE'S A FUN PERSON TO BE WITH. HE ALSO ENCOURAGES THE OTHER CASTS JUST HIGH FIVING EVERYONE. >> SO IN JUST A FEW MONTHS WITHOUT SINGING A SINGLE WORD, JADEN IS TAUGHT THESE STUDENTS SOMETHING THE TEACHERRER WANTS THEM TO REMEMBER LONG AFTER CURTAIN CALL. >> IN THEY STOP AND GO YOU KNOW WHAT, THERE IS A VALUE TO ABSOLUTELY EVERY PERSON >> WHEN YOU ACCEPT SOMEONE UNCONDITIONALLY YOU ALLOW THEM TO SHINE TOO. LAUREL CLARK, GLOBAL NEWS. >> BYE-BYE BIRDY. >> IT GOES ON A LITTLE WHILE THERE SO I'LL SKIP THAT. BUT THE COOL THING ABOUT THAT IS AFTER THAT, SO THAT WAS HIS GRADE 11 YEAR, HIS GRADE 12 YEAR HE DID AMAZING TECHNICAL GREEN COAT. YOU CAN IMAGINE THAT'S 12 COUPLES, LOT OF SCENES WITH 12 COUPLES DANCING IN THERE. AND ONE OF THE GIRLS IN HER LAST YEAR OF MUSICAL THEATER ACTUALLY ASKED IF SHE COULD BE JADE P'S WIFE. -- JADEN'S WIFE IN THE PLAY. AND THIS GIRL TAUGHT HIM AS CLOSE AS POSSIBLE ALL THE MOVES. HE COULDN'T DO EVERYTHING EVERY OTHER BOY DID BUT WHEN THE OTHER BOYS LIFTED UP THE GIRLS AND THROUGH THEM A LITTLE BIT IN THE AIR, SHE TAUGHT JADEN TO PUT HIS HANDS ON HER HIPS AND LIFT UP HIS HANDS AND SHE JUMPED TO MIMIC WHAT THE OTHER GIRLS WERE DOING. IT WAS AWESOME, EVERY YEAR THEY PUSHED HIM A LITTLE MORE. TO SEE HOW MUCH HE WAS ABLE TO THRIVE IN THAT WAS INSPIRATIONAL NOT JUST TO US BUT IT WAS INSPIRATIONAL TO EVERYBODY IN THE AUDIENCE. THE PLAY WAS BETTER, THE MUSICAL THEATER PRODUCTION WAS BETTER BECAUSE JADEN WAS IN IT THAN IF HE HADN'T BEEN. BUT ONE OF THE THINGS THAT'S OKAY TO -- I'M JADEN'S DAD AND I WATCH THAT AND WE CELEBRATE HOW AWESOME HE WAS, IT'S OKAY TO SAY JADEN AS YOU WATCH THAT ISN'T GOING TO HAVE A CAREER IN MUSICAL THEATER. THAT'S PROBABLY NOT WHERE WHEN YOU TRY TO LOOK AT THE ASSESSMENT OF WHERE HE CONTRIBUTES HE CONTRIBUTES IN THAT ENVIRONMENT AND SOMETIMES HOW WE DEFINE CONTRIBUTION IS A LITTLE BIT INTERESTING BUT IN THIS CASE HE -- IT'S NOT SOMETHING THAT HE WILL HAVE A CAREER IN BUT BECAUSE THEY HAVE TAKEN THIS TIME, BECAUSE HIS SCHOOL K-12 SCHOOL IN REGULAR CLASSROOM HE BUILT THIS COMMUNITY OF PEOPLE AROUND HIM THAT HAVE HIS INTEREST AT HEART THEY NOTICE WHAT HE IS GOOD AT. THESE PEOPLE REMEMBER WHEN JADEN DISHIS TIMES TABLES UP TO GRADE 4 HE WAS FASTER THAN ANYONE ELSE AND NEVER MADE A MISTAKE ON HIS TIMES TABLE. HIS SPELLING TESTS, GOT 100% ON MOST SPELLING TESTS BACK THEN. MATH GOT A LITTLE MORE ABSTRACT AND ENGLISH TOOK ON DIFFERENT FORMS MORE ABSTRACT AND HE STRUGGLED WITH THOSE THINGS BUT IN EARLY STAGES NOT ONLY WAS HE AS GOOD AS THE ORCHIDS HE WAS FASTER. WATCH HIM DO A WORD SEARCH TODAY I GUARANTEE FEW ROOM WOULD BE ABLE TO BEAT HIM. HE SEES THINGS DIFFERENTLY. WHEN HE WAS TOO YOUNG TO DO IT, YOU REMEMBER THE FOAM LETTERS YOU HAD WHEN LEARNING THE ALPHABET, THE FRAME AND FOAM LETTERS AND YOU PUT IT IN, MAYBE YOUR KIDS THAT HAD THOSE, WHEN HE HAD -- WAS WAY TOO YOUNG TO DO A FRIEND TOOK AWAY THE FRAME BECAUSE HE WAS FAST WITH THE FRAME, TOOK AWAY THE FRAME, PUT THE LETTERS IN A JUMBLE AND JADEN HAD NEVER DONE THE ALPHABET FREELY. AND HE DID THE ALPHABET AS FAST AS I COULD. PROBABLY FASTER THAN I CAN BECAUSE EVEN WITHIN THAT JUMBLE OF LETTERS, HE COULD SEE WHERE ALL THE LETTERS WHERE, IT WAS LIKE YOU CAN SEE THEM AT ONE TIME SO KNEW WHERE TO GRAB THE A, B, C FROM USING BOTH HANDS AND AMAZING TO WATCH. THIS FRIEND ON A WHIM AGAIN PUT THEM IN A PILE AND PUT THE Z DOWN. I'LL SAY Z HERE. HE PUT THE ALPHA BELT IN IN REVERSE AS FAST AS FORWARDS, NEVER HAVING DONE IT THAT WAY BECAUSE HE JUST KNEW THAT THE LETTERS GO IN THAT ORDER. HE DOESN'T HAVE -- TRYING TO DESCRIBE HIM, HE DOESN'T HAVE THE SERVANT SKILLS LIKE YOU WOULD SEE IN RAIN MAN OR OTHER SORT OF STORIES OF AUTISM. HE DOES SEE THE WORLD DIFFERENTLY, NO QUESTION. THERE'S NO SKILL SET I CAN IDENTIFY, HE'S A TERRIBLE ARTIST. HE GETS THAT FROM HIS DAD, I CAN'T DRAW ANYTHING, HE CAN'T DRAW ANYTHING. MUSIC IS A CHALLENGE FOR HIM EVEN RHYTHM IS A CHALLENGE FOR HIM SOMETIMES. BUT HE DOES HAVE THIS UNBELIEVABLE ABILITY TO SEE THE WORLD DIFFERENTLY. SO BECAUSE HE WAS INCLUDED IN MUSICAL THEATER AND BECAUSE HE'S INCLUDED IN THE CLASSROOM ALL THIS TIME AND BECAUSE HE'S SURROUNDED BY PEOPLE FOR WHOM THEIR NORMAL LIFE INCLUDES JADEN AND THEY CARE ABOUT HOW HE DOES, THEY ALSO SAY WHAT ELSE CAN HE DO? I WON'T GIVE IT AWAY, BUT I'M GOING TO PLAY THE VIDEO. WE HAD ME MY PRESENTATION USED TO END WITH THE MUSICAL THEATER STORY WHICH IS A NICE FEEL GOOD STORY BUT I WENT TO A REPORTER FRIEND OF MINE WHO DOES WORK WITH AUTISM SPEAKS AN EMCEE IT IS AUTISM SPEAKS WALKS AND I SAI I NEED YOU TO DO A STORY, I NEED IT TO SHOW A DIFFERENT THING THAT I NEED TO END WITH IN MY PRESENTATIONS AND SHE DID THE STORY THEN IT GOT PICKED UP BY THE NATIONAL NEWS IN CANADA. HERE IT IS. >> THAT STIGMA OFTEN FOLLOWS CHILDREN INTO ADULTHOOD HOLDING THEM BACK FROM THEIR FULL POTENTIAL. BUT THE TIDE MAYBE TURNING. TONIGHT WE HAVE THE STORY OF ONE YOUNG MAN WHO SHOWS WHAT CAN BE ACHIEVED IF GIVEN A CHANCE. HERE IS ALBERTA BUREAU CHIEF JANET DIRKS. >> WHEN IT COMES TO PUTTING AWAY LIBRARY BOOKS, JADEN LAKE LEAVES OTHERS IN THE DUST. >> JADEN CAN YOU DO THESE ONES TOO? >> HE'S NOT JUST FAST, HE'S ACCURATE. >> HE'S BETTER THAN -- HE'S FAST, HE KNOWS EXACTLY WHERE EVERYTHING GOES. HOW TO DO IT. >> JADEN HAS AUTISM. HE WAS DIAGNOSED WHEN HE WAS TWO. NOW 19 HE VOLUNTEERS AT THIS SCHOOL LIBRARY IN EDMONTON, WHILE NON-VERBAL HE'S A ENTHUSIASTIC WORKER. >> YOU LIKE WORKING IN THE LIBRARY? >> HE ALSO CATALOGS AN LABELS AND WORKS WITH COMPUTES. >> HE COULD WORK IN AN OFFICE OR A BANK OR ANYWHERE WHERE THERE IS NUMBERS AND ORGANIZATION. >> HE'S EXCITED TO WORK AND KEEP WORKING. >> JADEN'S FATHER IS MIC LAKE. HE WANTED EMPLOYERS TO GIVE TUBES WITH AUTISM A CHANCE. >> HE WOULDN'T BE ABLE TO DO A JOB INTERVIEW, THAT WOULD BE A CHALLENGE. SO IF HE WANTED TO WORK IN A LIBRARY OR WAREHOUSE WHERE HE NEEDS THESE SKILLS HE WOULD NEED SOMEBODY TO COMMUNICATE FOR THEM AND EXPLAIN WHAT HE'S GOOD AT. >> RESEARCH SHOWS ADULTS WITH AUTISM SPECTRUM DISORDER ARE UNDEREMPLOYED. ONTARIO STUDIED REVEALED ONLY 13% WORK FULL TIME. JUST SIX PERCENT HAVE PART TIME JOBS. >> CALGARY GARTH JOHNSON WANTS TO CHANGE THAT. HIS COMPANY CONNECTS BUSINESSES WITH ADULTS WITH AUTISM. IN SOFTWARE AND WEBSITE. >> EDUCATION, COMMITMENT, FOCUS, THEY WILL DO THIS JOB, AGAIN AND AGAIN AND AGAIN, FOR A LONG TIME. LONGER THAN WE WOULD DO JOBS AND STILL LOVE IT. >> ADVOCATES FOR PEOPLE WITH AUTISM SAY IT'S NOT CHARITY, IT'S CREATING OPPORTUNITIES AND WORKPLACES STAND TO BENEFIT MOST OF ALL. JANET DIRKS CTV NEWS, CALGARY. >> SO YOU SEE A DIFFERENT SIDE THERE. COUPLE OF THOUGHTS ON WHAT YOU SAW. FIRST OF ALL, INTERESTINGLY WHEN YOU WATCH HIS EXPRESSION WHEN HE'S WORKING LIBRARY IT LOOKS SIMILAR TO THE CNN INTERVIEW THAN TO THE OTHER STORIES. I SAY TO PEOPLE THAT'S HIS GAME FACE. THAT'S A COMPLETELY DIFFERENT EMOTION IN HIS MIND. HE IS DOING SOMETHING HE LOVES TO DO AND HE'S SERIOUS ABOUT IT AND WHEN HE'S WORKING OFTEN TIMES YOU WILL SEE THE TONGUE OUT A LITTLE BIT WHILE HE'S WORKING, HE GETS THAT FROM ME TOO. I THINK. BUT HE IS VERY, VERY SERIOUS ABOUT IT. HE LOVES TO PUT THE BOOKS AWAY. HE -- WHEN HE FINISHES WORKING SOMETIMES HE WILL CRY BECAUSE HE DOESN'T WANT TO STOP WORKING. HOW MANY OF YOU CRY WHEN YOU'RE DONE WORK? NOT VERY MANY. BUT HE DOES. OR MAYBE YOU CRY FOR DIFFERENT REASONS WHEN YOU'RE DONE, I DON'T KNOW BUT HE DOES. HE'S EVEN BETTER THAN WHAT YOU SEE IN THERE. WHEN HE'S WALKING AROUND THE LIBRARY WITH THAT PILE OF BOOKS HE'S GOT THEM SORTED AND READY TO PUT AWAY AND HE'S PUTTING THEM AWAY, HE WILL STOP GRAB A BOOK OFF THE SHELF AS WALKING BY BECAUSE SOME KID PUT IT IN THE WRONG SPOT AND HE JUST NOTICES IT. HE HAS THE SHELLS MEMORIZED AN WITHOUT SKIPPING A BEAT PUT IT WHERE IT BELONGS ON HIS WAY BY SO THAT'S WORKING IN A SCHOOL LIBRARY BUT YOU SEE A SKILL SET THERE THAT IS DEFINITELY SOMETHING THAT'S GOING TO BE TRANSFERABLE FOR HIM. HAVE TO WORK ON SOME CHALLENGES SOME OF THE LIFE SKILL STUFF, IT'S -- HE NEEDS HELP SOMETIMES TO KNOW WHEN TO GO TO THE BATHROOM. HE CAN GO TO THE BATHROOM HIMSELF BUT HE HAS TO ASK AND DOESN'T WORK IN A WORK ENVIRONMENT ALL THE TIME IF YOUR EMPLOYEE HAS TO BE REMINDED TO GO TO THE BATHROOM OR IF HE SEES A SERVICE DOG OR EVEN LOOKS OUT A WINDOW AT A WORKPLACE AND SEES A DOG OUTSIDE HE MIGHT TAKE OFF. IT WOULD BE SOMETHING THAT WOULD BE RISKY. HE WILL -- HE'S SO EXCITED TO PUT THOSE BOOKS AWAY WHEN HE HAS A CART IN THE BIGGER LIBRARY HE WORKED IN HE WILL RUN OVER A SENIOR CITIZEN ON HIS WAY THE PUT THOSE BOOKS AWAY. HE MIGHT NOT RECOGNIZE PEOPLE AS MUCH BECAUSE HE'S SO EXCITED AND SO ON A MISSION TO PUT THE BOOKS AWAY, THOSE ARE THINGS WE HAVE TO MITIGATE. WE HAVE THIS INCREDIBLE SKILL SET AND WE HAVE TO FIND WAYS TO MITIGATE CHALLENGES TO UNLOCK HIS ABILITY TO CONTRIBUTE AND CONTRIBUTE MEANINGFULLY. THE LAST VIDEO, ONE OF THE GREAT JOYS I GET IS THE OPPORTUNITIES TO SHARE MY KIDS WITH PEOPLE, IT E NOT JUST JADEN, JENEE AS WELL BUT WITH JADEN I COULDN'T DO WHAT I DO WITHOUT JADEN. JADEN IS REALLY -- HE'S UNBELIEVABLY CONNECTED PERSON THAT CONNECTS WITH PEOPLE IN A WAY THAT I DON'T KNOW VERY MANY PEOPLE THAT CONNECT THAT WAY. I DON'T THINK I KNOW ANYBODY THAT CONNECTS IN THE SAME WAY HE DOES WHEN HE NEEDS YOU. BUT HE COULDN'T DO WHAT HE DOES IN THAT CONNECTING WAY IN TERMS OF HELPING TO RAISE AWARENESS WITHOUT ME BECAUSE I'M HIS VOICE, HE CAN'T TALK AND THINGS WHEN HE DOES WORK ON HIS COMPUTER OR WRITE, IT'S SO CONCRETE ONE WORD NOUNS KIND OF THING THAT'S THE WAY HE THINKS. HE NEEDS ME TO HELP COMMUNICATE FOR HIM SO WE GET A CHANCE TO DO ITING TO. -- DO IT TOGETHER WHICH IS IN MY MIND THE ESSENCE WHAT LIFE IS IN GENERAL REGARDLESS OF LABELS AND OTHER THINGS. MY DAUGHTER IN THIS CLIP THAT I'M ABOUT TO SHOW, I LOVE THE FACT THAT MY DAUGHTER IS IN A 45 SECOND CLIP AT THE END OF THIS FOUR MINUTE VIDEO THAT I'M GOING TO SHOW YOU AND SHE WAS 13 AT THE TIME AND SHE GIVES PROBABLY WHAT I WOULD SAY IS THE BEST ANSWER TO ANY QUESTION THAT -- BETTER THAN ANY ANSWER I HAVE EVER GIVEN TO ANY QUESTION AS A 13-YEAR-OLD GIRL. CONTEXT LAST YEAR WE SPOKE TO A GROUP OF 15,000 STUDENTS IN AN ARENA IN SASKATCHEWAN AT A WEE DAY EVENT SO JADEN AND I GOT A CHANCE AND YOU WILL BE STRUCK -- JADEN HAS NO FEAR, DOESN'T KNOW HE'S STANDING IN FRONT OF 15,000 STUDENTS OR IF HE DOES KNOW IT, HE'S ENERGIZED BY IT. IT DOESN'T SCARE HIM, IT WOULD SCARE SOME PEOPLE WITH AUTISM, OBVIOUSLY, IN JADEN'S CASE HE REVLINGS IN THE NOISES AND THE MOVEMENT AND EVERYTHING ELSE THAT'S GOING ON AND YOU WILL SEE THAT SIDE OF HIM AS YOU WATCH THIS VIDEO CLIP. * >> ALL RIGHT, NOW YOU KNOW SHARING WITH OTHERS IS MUCH MORE THAN ABOUT SHARING YOUR OWN TALENT, IT'S ABOUT TAKING THE TIME TO DISCOVER THE TALENT AND THE GIFTS THAT YOUR PEERS HAVE AS WELL. SO HERE TO TELL US MORE ARE EDMONTON MP MIKE LAKE AND HIS SON JADEN. GIVE IT UP. [APPLAUSE] >> WHAT A FANTASTIC DAY. SO I'M GOING TO INTRODUCE YOU TO JADEN RIGHT NOW. AND I'M GOING TO LET HIM SAY HELLO, AFTER HE DOES THAT, YOU HAVE TO APPLAUD FOR HIM. SAY HI. >> HI. >> [APPLAUSE] >> JADEN HAS AUTISM. AND SHARING HIS STORY AROUND THE WORLD IS ONE OF THE MOST MEANINGFUL THINGS WE GET TO DO. JADEN'S UNIQUE IMPACT IS LINKED TO HUNDREDS OF YOUNG PEOPLE LIKE YOU WHO INVESTED IN HIM OVER 20 YEARS. JADEN'S NON-VERBAL. HAS TROUBLE WITH ABSTRACT CONCEPTS, HE WILL CRY WHEN SAD OR SQUEAL LOUD OR GIGGLE WHEN HAPPY. WHEN SOMETHING IS ON HIS MIND HE WILL GRAB MY FACE AND INQUIRE WITH AN ESCALATING BAY, BAY, BAY, BAY, BAY. UNTIL HE GETS THE EXPLANATION TO MOVE ON WITH HIS LIFE. HE'S ABSOLUTELY OBSESSED WITH DOGS. TO THE POINT HE'LL GO NOSE TO NOSE THE WITH ANY DOG REGARDLESS OF SIDES. SOMETHING WE ALWAYS HAVE TO BE AWARE OF. IN MY ANNUAL WORLD AUTISM DAY STATEMENT, I MENTION FOUR YEARS AGO THAT JADEN WAS MUCH LIKE OTHER 16-YEAR-OLDS, HE LOVES BAKING CHOCOLATE CHIP COOKIES WORKING IN SCHOOL LIBRARY AND BOWLING WITH DAD SATURDAY MORNING. HIS SISTER WAS QUICK TO REMIND ME AT THE TIME, DADDY, NO OTHER TEENAGE BOY LOVES DOING THOSE THINGS. BUT JADEN THE ADULT VERY MUCH LIKE THE JADEN WE HAVE KNOWN FROM CHILDHOOD. ALMOSTEN CONCEIVABLY INNOCENT, FOR THOSE WHO DON'T KNOW HIM HE IS REALLY EASY TO UNDERESTIMATE. YET FOR THOSE WHO DO GET TO KNOW HIM, JADEN'S UPSIDE IS IMMEASURABLE. HE'S THE FRIEND WHO ALWAYS BELIEVES THE BEST ABOUT YOU. THE WORKER WHO NEVER WANTS HIS SHIFT TO END. AND THE STUDENT WHO MAKES ALL OF THE OTHERS BETTER. HE'S THE BROTHER WHO LOVES HIS SISTER AN ISN'T AFRAID TO SHOW IT. AND THE SON WHOEVER SINGLE DAY REMINDS HIS PARENTS THAT THERE'S INCREDIBLE JOY TO BE DISCOVERED IN EVEN LIFE'S MOST DIFFICULT CIRCUMSTANCES. MAKE NO MISTAKE, AUTISM AND OTHER DEVELOPMENTAL DISABILITIES COME WITH VERY REAL CHALLENGES. BUT AS WE WORK TOGETHER TO UNDERSTAD AND ADDRESS THOSE CHALLENGES, OUR COUNTRY WILL UNEARTH A TREASURE OF UNIQUE TALENTS AND ABILITIE. WE JUST NEED TO TAKE THE TIME TO LOOK FOR THEM. [APPLAUSE] HERE IS A CLIP WITH JADEN WITH JENEE AT 13-YEAR-OLD OLD CAPTURES PERFECTLY WITH A 13-YEAR-OLD. >> IF I'M GOING ASK YOU A REALLY TOUGH QUESTION. I'M GIVING YOU A HEADS UP. AHEAD OF TIME. DO YOU EVER SOMETIMES WISH THAT YOUR BROTHER WAS QUOTE UNQUOTE, NORMAL, LIKE EVERY ORCHID? >> HONESTLY SINCE JADEN WAS DIAGNOSED WITH AUTISM BEFORE I WAS BORN I DON'T EXACTLY KNOW WHAT A NORMAL BROTHER IS LIKE. SO JADEN KIND OF IS MY NORMAL LIKE HAVING AUTISM SO I DON'T REALLY WISH THAT HE WAS NORMAL OR ANYTHING. >> YOU LIKE HIM THE WAY HE IS? >> IF HE DIDN'T HAVE AUTISM ANY MORE, LIKE CUREDDER SOMETHING, HE WOULDN'T BE THE SAME AS LIKE JADEN WAS NOW. [APPLAUSE] >> SO I'LL LEAVE YOU WITH THIS THOUGHT. THE MORE THAT A NORMAL LIFE FOR CANADIANS INCLUDES PEOPLE LIKE JADEN, THE MORE WE CAN WORK TOGETHER THROUGH THE HARD STUFF AND ALLOW EVERY SINGLE ONE OF OUR BROTHERS, SISTERS, NEIGHBORS AND FRIENDS TO THRIVE. THANK YOU SO MUCH FOR INCLUDING US IN YOUR DAY TO TODAY, I'LL LET JADEN HAVE THE LAST WORD. THERE YOU GO. THANK YOU. [APPLAUSE] >> SO I' WHEN I THINK ABOUT HER ANSWER SHE'S OBVIOUSLY TALKING ABOUT HERSELF AND SHE FOR HER SHE DIDN'T HAVE A CHOICE, SHE WAS BORN THREE YEARS AFTER JADEN, SHE HAD A BROTHER WITH AUTISM AND THAT HAS BEEN HER NORMAL. SHE'S AWESOME AND RESPONDED INCREDIBLY WELL TO IT. I KNOW SOME SIBLINGS HAVE MORE CHALLENGE THAN THAT. AND THERE'S OTHER SIBLINGS THAT COME UP WITH THE RELATIONSHIP EXACTLY THE SAME AS HERS BUT THE OTHER TAKE AWAY FROM THAT IS I THINK ABOUT OTHER STUDENTS IN THE SCHOOL, JADEN IS INCLUDED IN THE REGULAR CLASSROOM, THEIR NORMAL INCLUDES JADEN. THAT'S CRITICAL TO ME. I THINK THAT THE IDEA THAT NORMAL LIFE FOR PEOPLE INCLUDES PEOPLE LIKE JADEN. PEOPLE LIKE JODY. PEOPLE LIKE JOHN. AND THE MORE THAT NORMAL LIFE FOR ALL OF US INCLUDES JODY AND JADEN AND JOHN, ALL Js THERE, THE MORE -- THE BETTER THE ENVIRONMENT IS GOING TO BE FOR OTHER PEOPLE THAT COME AROUND AFTER. NOT JUST PEOPLE WITH AUTISM. IT'S GOING TO CHANGE THE WAY WE THINK OF THE PEOPLE AROUND US. OUR NORMAL, MY NORMAL IS 47 YEARS OF WHAT I EXPO. JADEN'S NORMAL IS # 1 YEARS OF HIS EXPERIENCE. EVERYTHING WE EXPERIENCE IS SOMETHING WE EXPERIENCED PERSONALLY, WE HAVE BEEN IN THERE IN THAT MOMENT AND EXPERIENCED THINGS THAT SHAPE OUR LIVES. THE WORK THAT I DO IN MY REGULAR CAPACITY, I'M THE CRITIC FOR GLOBAL MATERNAL NEWBORN AND CHILD HEALTH FOR OUR PARTY, I'M OPPOSITION NOW, I WAS IN THE GOVERNMENT SIDE FOR TEN YEARS BUT I'M OPPOSITION IN CANADA NOW. IN THAT ROLE BASICALLY I WORK TOWARDS THE OLD MILLENNIUM DEVELOPMENT GOALS, SUSTAINABLE DEVELOPMENT GOALS ON AN INTERNATIONAL BASIS BUT FOCUSIG ON SAVING LIVES OF KIDS UNDER FIVE AND MOTHERS IN AND AROUND CHILDBIRTH AND WORK AROUND THE RIGHTS OF WOMEN AND GIRLSES. SO TONS OF WORK AROUND THOSE THINGS. THE WAY THAT I WOULD ARTICULATE MY VISION IS, SORT OF MY MISSION IN LIFE WITH THIS PLATFORM IS, I WANT EVERY PERSON WITH DEVELOPMENTAL DISABILITY TO HAVE THE SAME OPPORTUNITIES MY 21-YEAR-OLD SON HAD. JADEN HA Z HAD A GREAT LIFE, THE PROVINCE WE LIVE IN FUNDED EARLY INTERVENTION FROM TIME HE WAS 2 AND A HALF. HE'S AT A GREAT EXPERIENCE IN SCHOOL, AND CONTINUES TO HAVE FANTASTIC SUPPORT BUT I WANT EVERY KID IN THE WORLD TO HAVE THAT SAME SUPPORT. I WANT EVERY GIRL IN THE WORLD TO HAVE THE SAME OPPORTUNITIES AS MY 17-YEAR-OLD DAUGHTER, SHE COULD BE PRIME MINISTER ONE DAY IN CANADA IF SHE WANTS TO BE. SHE DOESN'T WANT TO BE. SHE WANTS TO BE A MUSIC TEACHER AND WILL BE EXCELLENT AT THAT. SHE CAN DO ANYTHING SHE WANTS. ONE OF THE THINGS WE'RE WORKING ON RIGHT NOW AND THEN I'LL TAKE QUESTIONS IF ANYBODY HAS ANY, BUT THAT WOULD BE RELEVANT IN THIS ROOM IS THAT WE HAVE BEEN WORKING TOWARDS SOMETHING WE'RE TERMING FOR LACK OF BETTER TERM, A GLOBAL AUTISM PARTNERSHIP. SO THE IDEA OF JADEN AND I JUST DID A TED TALK ON SATURDAY, A TEDEX TALK IN TORONTO THAT'S NOT ON VIDEO YET BUT THE ARGUMENT WE MAKE, AD AS THE WORLD TALKS ABOUT WHO THE MOST VULNERABLE IS AND REACHING THE HARDEST TO REACH AND NO ONE LEFT BEHIND, THERE'S 17 GOALS THAT WE'RE FOCUSED ON AROUND THE WORLD. I THINK ABOUT HARD TO REACH, VULNERABLE AND HOW THOSE APPLY TO PEOPLE WITH AUTISM. THERE'S DEBATE AROUND WHO THOSE MOST VULNERABLE HARD TO REACH ARE AND SOMEONE MIGHT SAY A YOUNG BOY IN REFUGEE CAMP IN SYRIA, SOME MIGHT SAY A TEENAGE GIRL FROM IN RURAL AFRICA DEALING WITH EARLY FORCED MARRIAGE AND LACK OF BASIC EDUCATION AND ALL THE THINGS THAT GO WITH THAT. I WOULD SAY THOSE ARE INCREDIBLY DIFFICULT CIRCUMSTANCES, BUTETH EITHER PEOPLE COULD HAVE AUTISM ON TOP OF THAT AND WHAT THAT LOOKS LIKE MOCH MORE VULNERABLE THEY BE. WE OUGHT NOT GET INTO A CONVERSATION WHO IS MORE VULNERABLE HOE WE HAVE TO BE CAREFUL BECAUSE IN THAT ROOM PEOPLE HAVE VULNERABLES THAT ARE ABSOLUTELY LIFE SHAPING FOR THEM AND CAN BE DEVASTATING FOR THEM. BUT IT'S A CONVERSATION WE NEED TO HAVE, IF WE CAN WIRE OUR HEARTS TO REACH A TEENAGE GIRL WITH AUTISM OR ANOTHER DEVELOPMENTAL DISABILITY IN RURAL AFRICA, WE'RE GOING TO CHANGE HOW WE SEE ALL GIRLS IN AFRICA OR ALL GIRLS AROUND THE WORLD. AND IF WE CAN WIRE OUR HEARTS TO THINK ABOUT THAT BOY IN A REFUGEE CAMP WITH SYRIA WITH AUTISM OR DEVELOPMENTAL DISABLE AND REACH HIM, WE'LL CHANGE THE WAY WE SEE ALL REFUGEES. THINK ABOUT CHALLENGES WE FACE AT A GLOBAL LEVEL, THIS IS A WE HAVE THE OPPORTUNITY TO HAVE IMPACT FAR BEYOND THE AUTISM WORLD AS WE APPROACH THIS. SO I CAN TELL YOU A LITTLE BIT MORE ABOUT THAT IF PEOPLE WANT TO ASK QUESTIONS ABOUT THAT. BUT WITH THAT, I WILL WRAP UP THIS PRESENTATION AND GIVE JOHN THE FIRST QUESTION. [APPLAUSE] >> I WOULD LIKE TO THANK YOU FOR COMING AND THE VIDEOS AN STORY OF YOU AND YOUR SON. I THINK LAST NIGHT WE HAD A MOVIE SCREEN WHICH SHOWED YOUNG PEOPLE WITH AUTISM IN THE EMIRATES WHO ALL HAD SIGNIFICANTLY MORE APPARENT COMMUNICATION DISABILITY AND THEY HAD SEEMINGLY LESS COMMUNICATION DISABILITY THAN YOUR SON. I THINK THAT IN BOTH CASES WITH THE SCREENING OF THE MOVIE AND ADVOCACY THAT YOU ARE DOING ON BEHALF OF YOUR SON AND AUTISTIC PEOPLE, I THINK THAT'S REALLY IMPORTANT WORK THAT WE SHOULD SUPPORT. AND I WOULD LIKE TO SPEAK TO THE COMMENT THAT I HEARD FROM SOME PEOPLE AFTER LAST NIGHT'S FILM SCREENING. I RAISED THE QUESTION LAST NIGHT, IF THE MAKERS OF THE MOVIE WENT TO CONSIDERABLE TROUBLE TO SHOW THE AUTISTIC PEOPLE IN THAT FILM ARE WRESTLING WITH COMMUNICATION CHALLENGES AND COMMUNICATED WITH STORY BOARDS AND IN VARIOUS WAYS, I SAID TO THE PRODUCERS, GIVEN THAT YOU SHOWED THAT THE AUTISTIC PEOPLE COULD COMMUNICATE WHY THEN DID THEY NOT TELL THEIR OWN STORY AS OPPOSED TO HAVING PARENTS SPEAK FOR THEM. AND THEY EXPRESSED CONCERN ABOUT THEIR ABILITY TO TELL THE STORY. AT SOME POINT, THAT CONCERN IS NOT WARRANTED, CLEARLY I CAN TELL MY STORY AUTISTIC PERSON BUT EQUALLY MR. McCLEARY: JADEN COULD NOT TELL HIS STORY. ONE OF THE THINGS THAT CONCERNS ME WITH THE EVOLUTION OF AUTISM AWARENESS AROUND THE WORLD, IS AUTISTIC PEOPLE LIKE ME, VERBAL ARTICULATE PEOPLE HAVE EMERGED IN CONSIDERABLE NUMBERS. AND WE PRESENT AN APPARENT FACE OF AUTISM TO THE PUBLIC THAT IS VERY, VERY DIFFERENT FROM THAT LIVED BY YOUR SON OR BY YOUR DAUGHTER ALLISON, OR MANY OTHER AUTISTIC PEOPLE. WHEN I SEE THINGS LIKE THIS PUT UP, IT CONCERNS ME THAT SOMETIMES KRUTICKS IN THE AUTISM COMMUNITY -- CRITICS ATTACK THESE PRESENTATIONS CHARACTERIZING US AS BEING MADE INTO SELF-NARRATING ZOO EXHIBITS FOR EXAMPLE. AND YOU KNOW, I UNDERSTAND THAT PEOPLE ARE CONCERNED ABOUT THAT. BUT I ALSO UNDERSTAND THAT THE ONLY WAY WE'RE GOING TO BUILD AWARENESS OF THE REALITY OF LIFE WITH AUTISM FOR JODY, JADEN, FOR ALL THESE PEOPLE WHO CAN'T SPEAK FOR THEMSELVES, IS TO PRESENT THEM WITH LOVING CAREGIVERS MOST LIKELY PARENTS, WHO WILL PRESENT A SWEET STORY THAT THE NEWS MEDIA IS GOING TO WANT TO SHOW. AND I THINK THAT IT'S VERY, VERY IMPORTANT THAT WE UNDERSTAND THE CONTEXT OF THAT, THEY'RE NOT TAKING ADVANTAGE OF A PERSON WITH DISABILITY, RATHER IT IS TAKING A PERSON WITH AN APPARENT DISABILITY AND SHOWING HIS STRENGTH AND SHOWING HIM FINDING HIS PLACE IN THE WORLD. IT'S SOMETHING I HOPE THE IMMUNITY CAN CELEBRATE. I INTEND THIS REALLY NOT ONLY FOR YOU BUT FOR THE PEOPLE WHO AREN LISTENING TO OUR WEBCAST AND READING ABOUT OUR TRANSACTIONS, IT'S REALLY IMPORTANT. SO THEN THE MESSAGE FOR YOU, AS A MEMBER OF PARLIAMENT, AND SPEAKING TO US AS A GOVERNMENT BODY, HOW DO WE TAKE A SWEET STORY, LIKE THAT OF YOUR SON AND HOW DO WE TRANSLATE THAT INTO A BROADER RECOGNITION IN GOVERNMENT THAT WE ABSOLUTELY NEED TO BE FOCUSING ON THE KINDS OF QUALITY OF LIFE ISSUES THAT YOUR DAUGHTER, THAT YOUR SON, THAT MANY OTHER AUTISTIC PEOPLE NEED. YOU MAKE THE POINT VERY ELOQUENTLY WHEN HE STANDS UP ON STAGE THAT HE'S AN AUTISTIC PERSON WITH NEEDS VERY DIFFERENT FROM ME. AND WE ALL NEED TO BE SHOWING AND RESPECTING THAT DIFFERENT SIDE OF AUTISM AND WE NEED TO THINK HOW TO TRANSLATE YOUR STORY INTO CONSTRUCTIVE BENEFICIAL ACTIONS IN AMERICA, IN IMRATS, CANADA, AND ANYWHERE ELSE IN THE WORLD. >> YOUR COMMENTS ARE BANG ON. ONE THING THAT'S IMPORTANT TO REMEMBER IS WE'RE A TEAM. YOU AND I AND ALLISON AND JADEN AND JODY. WE ARE A TEAM, IT'S IMPORTANT TO REMEMBER WHEN WE'RE COMMUNICATING AS MUCH AS POSSIBLE WE NEED TO MAKE THAT POINT ABOUT THE SPECTRUM. AND HOW BROAD THAT SPECTRUM IS. I CAN'T DO IT EVERY TIME WHEN TELLING JADEN'S STORY, I CAN'T DO IT FULLY BECAUSE I AM TELLING THE STORY. THE NICE THING IS JADEN IS KIND OF IN THE MIDDLE SO HE CAN BE AN AVERAGE REPRESENTATION. HOW DO WE TURN THAT INTO ACTION? I THINK THERE'S AN ASPECT BUILDING BROADER AWARENESS AND STILL NEEDS TO HAPPEN, THAT'S ONE REASON A TARGET INTRO PSYCH CLASSES FOR THE PRESENTATION, I CAN HIT BIG NUMBERS OF PEOPLE WHO ARE GOING TO -- GOING TO GO OUT AND BE DOCTORS ABOUT TEACHERS AND NURSES AND BROAD SPECTRUM IN SOCIETY. THERE'S REAL ACTION THAT WE'RE WORKING ON AS WELL. SO WE WANT TO GET OUT AND BUILD THAT AWARENESS AMONG POLICY DECISION MAKERS. THIS IS WHAT THE GLOBAL PARTNERSHIP IS ABILITY, IN CANADA OUR CANADIAN AUTISM PARTNERSHIP, WE'RE AT A CRITICAL POINT IN TIME PUSHING THE GOVERNMENT TO FUND A VERY MINIMAL AMOUNT OF MONEY, 19 MILLION OVER FIVE YEARS IN CANADA SO THAT WOULD BE EQUIVALENT OF 190 MILLION HERE BECAUSE WE'RE A TENTH THE SIZE. NOT TO FUND TREATMENT, THAT'S THE PROVINCIAL RESPONSIBILITY IN CANADA BUT PUT A EXPERT WORKING GROUP TOGETHER ON ANYTHING THAT PEOPLE WITH AUTISM FACE AND ADVISE GOVERNMENTS AND JURY DICKS WHAT THEY NEED TO DO SO WE MIGHT HAVE EXPERT WORKING GROUP BY CANADIAN PARTNERSHIP ON EARLY INTERVENTION, HOUSING, TRANSITION, EDUCATION, MENTAL HEALTH, ON A LOT OF DIFFERENT THINGS THAT ANY TIME WE ADDRESS OR FACE SOMETHING, WITHIN THE AUTISM COMMUNITY WE WOULD WORK WITH GOVERNMENTS AND THEIR JURISDICTION TO FURTHER POLICY ON THAT, TO GIVE THEM SOUND ADVICE. THI ORGANIZATION, THIS PARTNERSHIP WOULDN'T BE A PROTEST ORGANIZATION. THAT'S -- THERE'S ADVOCACY ORGANIZATIONS THAT CAN DO THAT. THIS WOULD BE A TRUSTED PARTNER FOR GOVERNMENTS TO GIVE GOOD ADVICE ON AUTISM, THAT'S WHAT I ENVISION THE GLOBAL AUTISM PARTNERSHIP TO BE AS WELL. NOT A CANNOT BE -- CAN'T BE MONOPOLIZED BY ONE OR ANY GROUP OF ORGANIZATIONS, IT NEEDS TO INCLUDE ALL ORGANIZATIONS AS PART OF IT. IT NEEDS TO BE AN ORGANIZATION THAT INCLUDES IN THE U.S. AUTISM SPEAKS AND THE AUTISM SOCIETY OF AMERICA SIGNING ON BUT THE NATIONAL AUTISTIC SOCIETY IN THE UK AND RESEARCHERS AROUND THE WORLD WORKING TOGETHER TO FORM EXPERT WORKING GROUPS TO ADVISE WESTERN GOVERNMENT SO THEY CAN ADVISE GOVERNMENTS IN PLACE LIKE TANS -- TANZANIA WHERE I WAS LAST YEAR HOW TO IDENTIFY AUTISM BECAUSE SOME OF THE SENIOR DOCTORS IN THAT REGION DON'T KNOW WHAT THAT IS, THEY DON'T KNOW THE WORD AUTISM. LET ALONE EVERYTHING ELSE THAT GOES WITH IT. SO DEALING WITH GOVERNMENTS IN THE UAE AND DEALING WITH STIGMA THERE AND THINGS LIKE THAT AND WHAT WE LEARN DEALING WITH THE UAE OR THE VIDEO PRESENTATION THAT YOU GUYS DID LAST NIGHT, THAT'S REALLY INCREDIBLE KNOWLEDGE THAT SHOULD BE SHARED GLOBALLY SO FOR ANYBODY WITH STIGMA, THERE MIGHT BE AN EXPERT WORKING GROUP FOR DEALING WITH SPECIFIC CULTURES WHERE THERE'S A STIGMA ATTACHED AND HOW TO DEAL WITH MAYBE SIMILAR TYPES OF STIGMA, THIS IS THE WAY I ENVISION GLOBAL AUTISM PARTNERSHIP. WHEN I TALK ABOUT THIS, SO FAR WE HAVE HAD ONE VIDEO CONFERENCE WITH 12 PEOPLE AT A TABLE TO HAVE A CONVERSATION ABOUT WHAT THIS MIGHT LOOK LIKE BUT THESE 12 PEOPLE REPRESENT THE WHO IN GENEVA, THE INTERNATIONAL PEDIATRICIANS ASSOCIATION, THE PRESIDENT OF UNICEF, THESE PEOPLE WE CALL MARCH 22ND TO SIT AROUND A THEORETICAL TABLE, AND HAVE A CONVERSATION WHAT CAN BE SHARED FROM AUTISM SPEAKS AS BIG PART OF THAT CONVERSATION, WHAT THAT MIGHT LOOK LIKE MOVING FORWARD. >> THE MAY I SUGGEST WHEN YOU LIST ORGANIZATIONS THAT YOU ALSO REMEMBER TO MENTION THE AUTISTIC SELF-ADVOCACY NETWORK. IT IMPRESS ME GREATLY IN THE LAST COUPLE OF YEARS -- >> I JUST MADE A CONNECTION WITH HEM MARCH 31st IN NEW YORK AND ABSOLUTELY THEY WILL BE PART OF THE CONVERSATION. A VERY IMPORTANT PART OF THE CONVERSATION. BUT THANKS FOR THE -- >> I KNOW THEY'RE PUTTING TOGETHER AN AUTISM RESEARCH CONSORTIUM. WE KNOW SOMETHING ABOUT BRAIN CANADA. WONDER IF YOU COULD COMPARE WHAT YOU SEE THE BALANCE FEDERAL AND PHILANTHROPIC EFFORT IN CANADA FOR AUTISM SCIENCE AND WHERE THE MAJOR OPPORTUNITIES ARE. >> OH, BOY. ONE OF THE BIG CHALLENGES I HAVE HAD IN CANADA, CANADIAN AUTISM PARTNERSHIP, YOU CAN RELATE TO THIS, THE COMPETITION ASPECT, EVERYBODY HAS THEIR THING THEY'RE FOCUSED ON AND THEY'RE FOCUSED ON THAT VERY PASSIONATE ABOUT THAT THING THEY'RE WORKING ON. BUILDING ANY KIND OF PARTNERSHIP IS -- IT'S ASTONISHINGLY CHALLENGING AND IT'S UNDERSTANDABLE. THE GROUP WE HAVE WORKING RIGHT NOW IN THE CANADIAN AUTISM PARTNERSHIP, INCLUDES THE MIRIAM FOUNDATION WHICH IS VERY, VERY INVOLVED IN MONTREAL WITH THE THINGS GOING ON WITH SOME OF THE OTHER GROUPS THAT ARE THERE. YOU CAN'T INVOLVE EVERYBODY. BUT WE GOT FOUR RESEARCHERS, STEVEN SHEER IS ONE OF IS THE IS THE PEOPLE ON THE EXPERT WORKING GROUP, LONNY WAGONBOM. SOMNOHERE. JONATHAN WISE, THAT WAS FOUR RESEARCHERS AS PART OF IT. WE TRIED TO CAPTURE IN OUR WORKING GROUP IN CANADA, WE TRIED TO CAPTURE THE -- YOU CAN'T GET EVERYBODY TO REPRESENT REGIONALLY. WE WANT THEM TO REPRESENT THE BROAD ARRAY OF ORGANIZATIONS. THEY HAVE A SELF-ADVOCATE ADVISORY PANEL OF SEVEN SELF-ADVOCATES WHO WEIGHED VERY HEAVILY AND ADVOCATING STRONGLY FOR THE CANADIAN AUTISM PARTNERSHIP AT THE SAME TIME SO IT'S SOMETHING THAT HAPPENED AT A CANADIAN LEVEL BUT AGAIN, IT IS SO IMPORTANT AS WE BUILD THESE PARTNERSHIPS THE ORGANIZATION TO COMPETE WITH EVERYBODY ELSE. IT'S SO IMPORTANT OF THE PARTNERSHIP, IT'S A PARTNERSHIP, WHAT DO WE AGREE ON? AND HOW CAN WE SPEAK WITH ONE VOICE TOWARDS WHAT IT IS THAT WE AGREE ON? THOSE ARE THE QUESTIONS WE HAVE TO ANSWER IN CANADA. AND WE HAVE DONE A PRETTY GOOD JOB OF THAT. BUT IT'S THE AUTISM COMMUNITY. AND THERE'S STILL A CERTAIN PERCENTAGE THAT ARE REALLY LOUD AND ASKING FOR SOMETHING COMPLETELY DIFFERENT AT TIMES. THE ANSWER FOR US IS MAKE SURE THAT THE COALITION OR PARTNERSHIP IS LARGE ENOUGH THAT IT'S CLEARLY REPRESENTS 90% OR 95% SOMEONE MAKING A DECISION. I'M ON THE DECISION MAKING SIDE AND FOR THOSE OF YOU THAT ADVOCATE IN SOME WAY FOR POLICY CHANGES, UNDERSTAND ON THE DECISION MAKING SIDE THAT 5% IS USUALLY NOT SEEN AS FIVE PERCENT, IF THE 5 PERCENT LOOKS LIKE 50% US BECAUSE THEY'RE SO LOUD, VOCAL AND PASSIONATE, IT WILL HAMPER ANY DECISIONS WE'LL MAKE POLICY WISE BECAUSE IT'S SOON AS TOO RISKY FOR A POLICY MAKER. SO THIS IS THE IMPORTANCE OF PARTNERSHIPS AND ANY TIME YOU'RE I TEMPTED TO THINK YOU CAN DO IT WITH 60 OR 55% OR SOMETHING, YOU CANNOT. IT HAS TO BE A BIGGER NUMBER. NO ONE ORGANIZATION OR NO ORGANIZATION THAT REPRESENTS JUST 60% CAN DO IT. WE HAVE TO FIND THOSE THINGS THAT WE AGREE ON WHICH IS A LOT OF THINGS. WE AGREE EARLY INTERVENTION HAS IMPACT BUT IF YOU'RE POLICY MAKER WITH NO BACKGROUND IN AUTISM AND YOU HEAR ONE ONE PERSON SAY SOMETHING DIFFERENT THAN THAT, IT CAN CAUSE CHAOS AND CAUSE YOU TO MAKE A DIFFERENT DECISION OR PUT OFF THAT DECISION. >> THANK YOU, VERY MUCH, MIKE. I'M AFRAID WE HAVE TO MOVE ON. GREAT HEARING FROM YOU. IMPORTANT ISSUES. >> THANK YOU VERY MUCH FOR THE OPPORTUNITY TO BE HERE AND FOR EVERYTHING THAT ALL OF YOU ARE DOING FOR FAMILIES JUST LIKE MINE. [APPLAUSE] >> NOW IT'S MY PLEASURE TO INVITE MELISSA SPENCER, OUR NEWEST MEMBER OF THE COORDINATING COMMITTEE TO TELL US ABOUT THE SOCIAL SECURITY ADMINISTRATION DISABILITY PROGRAMS AND RELEVANCE FOR THIS GROUP. >> GOOD MORNING. I APPRECIATE THE OPPORTUNITY TO BE PART OF THIS COMMITTEE AND THE PRESENTATION WAS FABULOUS, IT WAS REALLY INSPIRING AND IT GOES TO SHOW HOW IMPORTANT IT IS FOR OUR AGENCY TO NOT ONLY BE BENEFITS PAYING AGENCY BUT TO ALSO BEGIN TO CONSIDER HOW DO WE TRANSITION ANYONE RECEIVING DISABILITY BENEFITS TO BE A CONTRIBUTOR. TO MOVE TOWARDS EMPLOYMENT OPPORTUNITIES. NOW, I ONLY HAVE 15 MINUTES THIS MORNING. THIS PRESENTATION IS WAY TOO LONG FOR 15 MINUTES BUT I MAINLY INCLUDED THE INFORMATION FOR YOUR REFERENCE AND IF ANYBODY HAS QUESTIONS I'LL BE HAPPY TO TAKE THEM TODAY OR ANY OTHER OCCASION WHERE WE'RE MEETING. SO A QUICK DISABILITY ONE ON ONE, THOSE NOT FAMILIAR WITH WHAT BENEFITS SSA PROVIDES FOR AMERICANS. WE HAVE TWO DISABILITY BENEFIT PROGRAMS TITLE 2, WHICH IS SOCIAL SECURITY DISABILITY INSURANCE PROGRAM, GENERALLY CALLED WORKER DISABILITY PROGRAM, YOU PAY INTO IT WITH EARNINGS FROM EMPLOYMENT AND WE HAVE SUPPLEMENTAL SECURITY INCOME WHICH IS A MEANS TESTED PROGRAM WHICH IS BASED ON GENERAL TAX REVENUES. SO FOR TITLE TWO, AGAIN YOU HAVE TO HAVE WORK, YOU HAVE TO HAVE RECENTLY WORKED SO SOMEBODY WORKED TEN YEARS AGO AND NOW APPLYING FOR DISABILITY BENEFITS IT WOULD BE HARD TO SAY THAT SOMEONE CAN MEET THE DISABILITY REQUIREMENTS CURRENTLY. IF ONE SOMEONE IS AWARDED BENEFITS THEY HAVE A WAITING PERIOD BEFORE BENEFITS START AND ONE BIG THING WITH TITLE 2 DISABILITY IS MEDICARE AFTER YOU HAVE BEEN ON THE ROLLS A COUPLE OF YEARS WHICH IS VERY HELPFUL. MY SISTER IS ON THE ROLE, SHE HAS METASTATIC COLON CANCER AND IT'S BEEN A LIFE SAVER FOR HER IN TERMS OF HELPING HER MEET THE GAP FOR HER CHEMOTHERAPY TREATMENT. SO IT'S PROVIDES VALUABLE BENEFITS. FOR S SI, THERE ARE BENEFITS FOR ADULTS ABOUT THERE ARE BENEFITS FOR CHILDREN. AND WITH MEDICAID COMES WITH SSI. AND OTHER HEALTH INSURANCE. THIS IS A LONG WINDED EXPLANATION WHAT THE DISABILITY DEFINITION IS. IS THE STATUTORY, DISABILITY MEANS YOU'RE NOT ABLE TO WORK FOR A PERIOD THAT'S CONTINUOUSLY GOING THE LAST OR HAS HA LASTED 12 MONTHS OR IS GOING TO RESULT IN YOUR DEATH. AND SO THIS IS THE WHOLE PROCESS WE HAVE TO ASSESS SOCIAL SECURITY DISABILITY ELIGIBILITY IS BASED AROUND THIS STATUTORY DEFINITION. FOR CHILDREN IT'S A COMPARABLE DEFINITION. SO ON A VERY QUICK WE HAVE A FIVE STEP PROCESS, I USED TO ADJUDICATE DISABILITY CLAIMS BACK IN THE '80s, THIS DEFINITION, THIS PROCESS IS BURNED INTO MY BRAIN. CERTAINLY, IF WITHIN IS WORKING, EVEN IF THEY HAVE A SEVERE IMPAIRMENT WHETHER IMPAIRMENT ON THE AUTISM SPECTRUM OR SAY SOMEBODY WHO'S PARAPLEGIC, IF THEY'RE WORKING AND EARNING WHAT GOVERNMENT DEFINES AS GAINFUL ACTIVITY THEY CANNOT BE ELIGIBLE FOR BENEFITS. SECOND STEP WE ROOK TO SEE WHETHER OR NOT THE MEDICALLY DETERMINABLE IMPAIRMENT SOMEBODY HAS WHETHER OR NOT IT IMPOSES MORE THAN MINIMAL LIMITATIONS. WE ARE LOOKING AT THINGS LIKE STANDING WALKING LIFTING CARRYING. PAYING ATTENTION. CONSENTING, THOSE TYPES OF ACTIVITIES. WHERE WE START TO CONSIDER AUTISM WHICH I'M GOING TO TALK ABOUT IN A MINUTE, IS AT STEP THREE, WHICH IS A SET OF MEDICAL CRITERIA, SSI DECIDED VIA REGULATION ARE SEVERE ENOUGH THAT BY THEMSELVES ARE CONSIDERED DISABLING. WE DON'T CONSIDER SOMEBODY'S ABILITY TO WORK, WE CONSIDER THE IMPAIRMENT AT THAT LEVEL SEVERITY TO BE ENOUGH TO QUALIFY FOR BENEFITS. IF SOMEONE'S MEDICAL CONDITION ISN'T SEVERE ENOUGH TO QUALIFY WE LOOK AT THEIR ABILITY TO WORK. HOW MUCH SOMEBODY CAN STAND THE DAY, HOW MUCH SOMEBODY CAN LIFT, CARRY AND AGAIN THE ATTENTION CONCENTRATION, PERSISTENCE, PACE, GET ALONG WITH OTHER PEOPLE, COMMUNICATE. FROM THAT IS YENLY THE PROCESS WE GO THROUGH. NOW, I HAVE DEFINED ALL THESE HERE, I WON'T GO OVER THEM AGAIN. FOR AUTISM IN PARTICULAR, IN REGULATION, WE HAVE TO USE A SPECIFIC PROCESS TO GO THROUGH WHETHER OR NOT SOMEONE'S IMPAIRMENT MEETS OUR MEDICAL REQUIREMENT. WE USE SOMETHING CALLED A PSYCHIATRIC REVIEW CRITERIA. THIS MEANS WHAT WE HAVE TO DO IS NOT ONLY CONSIDER THE OBJECTIVE FINDINGS BUT WHAT WE CALL PARAGRAPH B CRITERIA, WHICH IS FUNCTIONAL INFORMATION. THESE ARE WOVEN IN THROUGH MANY OF OUR MENTAL IMPAIRMENT LISTINGS BUT ALSO SOME OF THE PHYSICAL CRITERIA HERE. WE ARE LOOKING FOR THE ABILITY TO REMEMBER, INTERACT, CONCENTRATE AND ADEPARTMENT. ADAPT. MANAGE YOURSELF. IN TERMS OF THE RATING SCALE, IT'S A PRETTY TYPICAL RATING SCALE RANGING FROM NO LIMITATION TO BEING EXTREMELY LIMITED. ESSENTIALLY THAT MEAN THERE'S NO MEANINGFUL FUNCTION. FOR AUTISM IN PARTICULAR, I DON'T KNOW IF YOU'RE FAMILIAR WITH IT OR NOT BUT IN JUST EARLY THIS YEAR, WE PUBLISHED THE FIRST UPDATE TO MENTAL LISTINGS IN 30 YEARS. 30 YEARS, IT'S TAKEN US TO GET UPDATE TO LISTINGS. AND OUR MENTAL LISTINGS COVER EVERY MENTAL HEALTH IMPAIRMENT THAT THERE IS. AND SO THERE -- IT TOOK A LONG TIME TO REACH AGREEMENT ON WHAT WAS GOING TO BE IN THE LISTINGS. IN PARTICULAR, THE BIGGEST CHANGES IN OUR LISTINGS WERE IN INTELLECTUAL DISORDERS, AND SOME OF THE RELATED IMPAIRMENTS. SO AUTISM HAS BEEN -- AUTISM SPECTRUM DISORDER HAS BEEN A LISTING BY ITSELF. SINCE 2000. BUT EVEN IN 2000 IT WAS INCLUDED IN WITH OTHER PERVASIVE DEVELOPMENTAL DISORDERS. BEFORE THEN IT WAS INCLUDED WITH INTELLECTUAL DISORDERS, WITH WHAT WAS FORMALLY KNOWN AS MENTAL RETARDATION. JUST AS -- WAS MENTIONED BEFORE, THE TERMINOLOGY HAS CHANGED. THAT'S ONE OF THE BIG TERMINOLOGIES IN THE LISTINS THAT'S CHANGED. SO FOR AUTISM ITSELF WHAT WE REQUIRE IS SOME SPECIFIC DEFICITS IN VERBAL NON-VERBAL OR SOCIAL INTERACTION AND THERE BE SIGNIFICANTLY RESTRICTED REPETITIVE PATTERNS OF BEHAVIOR INTEREST OR ACTIVITIES SO THOSE ARE THE MEDICAL DOCUMENTATION WE'RE LOOKING FOR TO ASSESS ANY CLAIM. THEN AS I NOTED BEFORE, WHAT WE'RE LOOKING FOR IS EITHER NO MEANINGFUL FUNCTION IN AT LEAST ONE OF THOSE FOUR AREAS OR VERY LIMITED FUNCTION IN AT LEAST TWO AREAS. WE ASSESS THAT -- WE ASSESS THAT THROUGH GETTING INFORMATION ABOUT FUNCTION FROM PARENTS, FROM TEACHERS, FROM CAREGIVERS, MEDICAL PROFESSIONALS FAMILIAR WITH THE CHILD OR THE ADULT. I HAVE INCLUDED INFORMATION FOR YOU ABOUT GENERAL HOW DO YOU APPLY FOR BENEFITS. YOU MAY HAVE NEED FOR THIS IN WORKING WITH MEMBERS IN THE COMMUNITY. TYPE OF INFORMATION REQUIRED TO FILE FOR BENEFITS. HERE IS SOME OF THE BACKGROUND ABOUT SOME OF OUR DEMONSTRATION PROJECTS. THERE'S FOUR WE PULL YOU HAVE HAD OUT WHERE WE THOUGHT WAS INTEREST, I'M NOT THE PERSON WHO RUNS THE DEMONSTRATION PROJECTS SO BEAR WITH ME IF YOU HAVE QUESTIONS I'LL GET INFORMATION BACK TO YOU, IT'S IN MY SISTER COMPONENT, PART OF OUR RESEARCH ORGANIZATION. WHAT WE'RE LOOKING AT IS IF WE PUT DIFFERENT PASSAGE PACKAGES OF SERVICES TOGETHER, PEOPLE WHO WERE DEMIED BENEFITS, WE -- DENIED BENEFITS PEOPLE NOT DECLARED SEVERE ENOUGH TO QUALIFY FOR SOCIAL SECURITY OR SSI, WE'RE TRYING TO FIND OUT IF WE CAN INTERVENE AND HELP THAT PERSON REMAIN IN THE WORK PLACE OR RETURN TO THE WORKPLACE. THESE ARE FOR YOUNG ADULTS THROUGH AGE 50. IN INDIVIDUALS WITH MENTAL IMPAIRMENT. SO THIS IS AWAITING -- WE HAVEN'T GOT FINAL SITES YET, ENROLLMENT BEGINS THIS FALL. MONTHS OF SERVICE THROUGH 2020. SO I WILL BE ABLE TO PROVIDE MORE INFORMATION AT A LATER TIME. THE SECOND DEMONSTRATION PRODUCT IS ONE YOU MAY HAVE HEARD ABOUT PROMOTING READINESS OF MINORS IN SSI OR AS WE CALL IT AND I THINK MOST OF THE PEOPLE KNOW BY THE NAME OF THE -- PROJECT. THESE FOR YOUTH ON SSI AND IT'S IMPROVED COORDINATION OF SERVICES TO HELP SSI CHILD MAKE TRANSITION TO AT LEAST SOME WORK AS TEENAGER. THIS IS WORKING IN SEVERAL STATES, THE STATES LISTED IT'S NOT A NATIONWIDE GRANT. MATT PALATKA IS EVALUATING THE PROJECT FOR US. WILL INCLUDE CASE MANAGEMENT BENEFITS COUNSELING AND CAREER AND WORK BASED LEARNING EXPERIENCES. AND ALSO HELP WITH PARENT TRAINING. NEXT IS PROMOTING OPPORTUNITY DEMONSTRATION. THIS GET INTO WHAT SOME SAY ESPECIALLY FOR THE TITLE TWO OR DISABLED WORKERS PROGRAM IS SOMETIMES THERE'S NOT AN INCENTIVE TO WORK BECAUSE IF YOU WORK ABOVE A CERTAIN DOLLAR YOUR BENEFITS STOPPED ME CARE STOPS. SO THIS BEGINS GRADUALLY REDUCING EXAMINATION AMOUNTS AS WORK EARNINGS INCREASE, AT THE POINT IN TIME EARNINGS GET TO SOW ROW YOUR BENEFITS STOP. -- ZERO YOUR BENEFITS STOP HOWEVER MEDICARE CONTINUES FOR 93 MONTHS. SO THIS IS RANDOMLY AGAIN, RECRUITING ENROLLING AND RANDOMLY ASSIGNING BEGINNING IN OCTOBER OF 17. MORE TO COME ON THAT ONE. LAST IS BOND, BENEFIT OFFSET NATIONAL DEMONSTRATION. 'S A ONE DOLLAR REDUCTION FOR EVERY TWO DOLLARS OF EARNINGS THAT YOU HAVE. AND AGAIN, IT'S DESIGNED TEST WHETHER BENEFIT OFFSET WILL ENCOURAGE RETURN TO WORK. THIS IS A LARGE GROUP THAT INVOLVES 1,968,000 BENEFICIARIES IN STAGE 1 AND NEARLY 13,000 IN STAGE 2 AND IT'S PROVIDING HELP AND SUPPORT TO DISABLED INDIVIDUAL TO HELP THEM RETURN TO THE WORKPLACE. NOW I HAVE REALLY RUN THROUGH THESE SLIDES VERY FAST. ONE THING THAT I WOULD LIKE TO -- AND THIS IS NOT FROM THE DISABILITY PERSPECTIVE TO ENCOURAGE ALL OF YOU TO THINK ABOUT REGISTERING FOR MY S SA ACCOUNT, THE MORE YOU ESTABLISH YOUR OWN ACCOUNT THE MORE YOU CAN BE INFORMED WHAT YOUR OWN RETIREMENT EARNINGS WOULD BE, WHAT YOUR DISABILITY BENEFIT WOULD BE SHOULD YOU BECOME DISABLED. THE PLAN IS EVERY APPLICANT TO FILE THEIR CLAIM ONLINE IN MY SOCIAL SECURITY.GOV. NOT SURE IF MARYLAND YET HAS ABILITY TO GET REPLACEMENT SOCIAL SECURITY CARD. I KNOW MYSELF, HAVING ROUTINELY LOSE THEIR SOCIAL SECURITY CARD, YOU WILL BE ABLE TO DO MUCH OF THAT ONLINE. WITHOUT HAVING TO GO INTO A SOCIAL SECURITY OFFICE. SO THAT SHOULD GET YOU TO REGISTER THAT YOU'RE GOING TOABLE ABLE TO THAT DO THAT. -- TO BE ABLE TO DO THAT. HAPPY TO TAKE ANY QUESTIONS. IF NOT, THANKS AGAIN FOR THE INVITATION. [APPLAUSE] >> ANY QUESTIONS FOR MS. SPENCER? PLEASE. >> I WANTED TO SAY HOW EXCITING I THINK THESE DEMONSTRATION PROJECTS ARE. AND THINGS THAT WE SEE A LOT ARE YOUNG ADULTS OR ADULTS WITH AUTISM WHO MAYBE DON'T QUALIFY FOR SSI BUT WOULD JUST TAKE A LITTLE TINY BIT OF SUPPORT TO MAKE THE DIFFERENCE FOR THEM. THE OTHER THING WE SEE IS PEOPLE WHO THEY MAY NOT WORK AND THE LOSS OF THE SSI INCOME THEY'RE WORRIED ABOUT BUT THE INSURANCE. SEEING THESE DEMONSTRATION PROJECTS THAT ARE TACKLING THESE ISSUES I THINK IS REALLY EXCITING >> THANK YOU. >> WELCOME TO THE COMMITTEE. I'M A PARENT OF A 13-YEAR-OLD DAUGHTER WITH AUTISM. SO HAVING JUST FINISHED PAYING OFF STUDENT LOANS NOW MY WIFE AND I ARE WORKING ON PLANNING FOR HER FUTURE AND SO WE MADE AN ACCOUNT AND MADE AN ACCOUNT FOR HER AND WHAT WE WERE STRUCK BY IS JUST HOW COMPLEX THE RULES ARE FOR A FAMILY LIKE US WHERE WE -- WE MAKE A GREAT LIVING BUT NOT ENOUGH TO EFFECTIVELY HIRE, SO WE'RE RIGHT THERE. AND REALIZING THE UM IN OF WAYS AS WE TRY TO PLAN TO ESTABLISH A TRUST FOR HER, WE'RE FORTUNATE TO BE ABLE TO DO THAT SO I'M NOT COMPLAINING BUT THE NUMBER OF WAYS WE CAN EFFECTIVELY KNOCK HER OUT OF ANY ELIGIBILITY FOR THE SOCIAL SECURITY BENEFITS THAT I HAVE BEEN PAYING INTO SINCE I WAS 14 IS JUST -- THE SEEMINGLY TRIVIAL WAYS THAT SHE CAN BE KNOCKED OUT OF BENEFITS AND MY WIFE MAJORED IN FINANCE AND RUNS SEVERAL COMPANIES AND I DO NEUROSCIENCE WHICH QUALIFIES ME TO BE PREVENTEDED FROM TOUCHING ANY MONEY. BUT IT'S SURPRISING EVEN WITH OUR SOPHISTICATION, SO I CAN'T IMAGINE A FAMILY WHO WITH LESS RESOURCES AND THE AMOUNT OF MONEY WE WOULD SPEND ON AN ATTORNEY TO FIGURE THIS OUT AND I STARTED CALCULATING HOW MUCH ATTORNEYS MUST MAKE HELPING TO INTERPRET THE LAW. SO I'M NOT PICKING ON YOU AS MUCH AS JUST WE AS A COMMITTEE THINKING OF WAYS WE CAN POSSIBLY MAKE THIS EASIER BECAUSE I THINK THERE WERE A NUMBER OF WAYS FOR A FAMILY WITH LESS MEANS THAT THEY CAN KNOCK THEIR CHILD OUT OF RECEIVING NEEDED BENEFITS. OR BE SO OVERWHELMED THAT THEY'RE THINKING OH, I NEVER WANT MY CHILD TO WORK OR ACHIEVE ANY INDEPENDENCE. THEY'LL GET NOTHING THEY'RE ENTITLED TO WHICH IS KIND OF THROWING THE BABY OUT WITH THE BATH WATER SO TO SPEAK. SO JUST A COMMENT ON THAT. AND WHAT WE MIGHT DO TO HELP CLARIFY THAT. >> THAT'S ANOTHER REASON I'M GLAD WE'RE INCLUDED IN THIS COMMITTEE NOW BECAUSE I KNOW ACTIONS WE'RE TAKING SUCH AS DEMONSTRATION PROJECTS, THE -- TRYING TO SIMPLIFY RULES WHICH ARE INCREDIBLY COMPLICATED. I WORK IN THE PROGRAM AND THEY'RE INCREDIBLY COMPLICATED. I RECOGNIZE THAT. YOU TALK ABOUT -- THERE'S ALSO THE NEW ABLE ACCOUNTS WHICH I'M STILL LEARNING ABOUT. BUT IN TERMS OF A CHILD WHO IS ON SSI LINE OF FAMILY RESOURCES VERSUS DISABLED ADULT CHILD BENEFITS FOR THE WORKER, IT IS VERY COMPLICATED SO I LOOK FORWARD TO WHAT CAN WE DO TO HELP WITH PUBLIC INFORMATION THAT MAKES IT CLEARER FOR FAMILY WITH A DISABLED MEMBER TO HELP APPLY FOR BENEFITS AND UNDERSTAND THE PROCESS THEY'RE WAITING THROUGH SO I LOOK FORWARD TO THAT DISCUSSION. >> THANK YOU VERY MUCH. WELCOME. [APPLAUSE] >> OKAY. BY MY PHONE, WHICH IS PROBABLY REASONABLY ACCURATE, WE'RE RUNNING ONLY TWO MINUTES BEHIND. WE ARE GOING TO TAKE SHORT BREAK TO ALLOW PEOPLE TO RELIEVE WHATEVER NEEDS RELIEVING OR FUEL WHATEVER NEEDS FUELING AND BE BACK HERE AT 10:40, WHICH IS IN 8 MINUTES. IT'S MY MEASURE TO INTRODUCE OUR NEXT SPEAKER DR. SCOTT MICHAEL ROBERTSON, FORMAL MEMBER OF OUR COMMITTEE FROM 2012 TO 2014, AS WELL AS MR. ANDY ARIAS, HOPE I'M GETTING THAT RIGHT FROM THE U.S. DEPARTMENT OF LABOR. THEY'LL BE SPEAKING TO US ABOUT A RECENT REPORT PRODUCED BY THE FEDERAL ADVISORY COMMITTEE ON DISABILITY EMPLOYMENT. I BELIEVE WE ALSO HAVE THE ASSISTANT SECRETARY HERE AS WELL. SECRETARY SHEEHAN. >> DEPUTY SHE'S DEPUTY -- >> DEPUTY ASSISTANT SORRY SECRETARY. AT LEAST IT WAS INADVERTENT PROMOTION. >> ARE WE READY FOR ME TO BEGIN? >> YES, PLEASE. >> OKAY. THANK YOU. THANK YOU TO THE COMMITTEE FOR INVITING US HERE TO PRESENT ON RECOMMENDATIONS FROM THE ADVISORY COMMITTEE ON INCREASING COMPETITIVE INTEGRATED EMPLOYMENT FOR INDIVIDUALS WITH DISABLES. CAN Y'ALL HERE -- DISABILITIES. CAN Y'ALL HEAR ME? I'M SCOTT MICHAEL ROBERTSON AND THIS IS ANDY. AND WE'LL BE SHARING THE RECOMMENDATIONS AND I WILL EMPHASIZE MULTIPLE TIMES THROUGHOUT THIS PRESENTATION THE RECOMMENDATIONS COME FROM THAT ADVISORY COMMITTEE. ONE OF THE REASONS THAT WE'RE HERE FROM THE DEPARTMENT OF LABOR IS BECAUSE THAT COMMITTEE HAD A LIMITED TIME PERIOD, THE FINAL REPORT LIVES ON AS A DOCUMENT WITH THE COMMITTEE DISBANDED, HAD A SUN SET IN THE STATUTE CHUTE IN WIOA THE WORK FORCE INNOVATION AND OPPORTUNITY ACT LAST YEAR IS WHEN THE COMMITTEE FINISHED MEETING AFTER THE FINAL REPORT IS THAT'S WHY WE'RE SHARING THE RECOMMENDATIONS TODAY. SO THE RECOMMENDATIONS WERE DRIVEN LARGELY BY THE NON-FEDERAL MEMBERS OF THAT ADVISORY COMMITTEE. WHAT CHANGES THE SLIDES HERE? DO I JUST HIT THE ARROW KEY? SO ODEP CORE MISSION, I WANT THE SHARE BRIEFLY AND GIVE BACKGROUND ON THE WORK FORCE INNOVATION OPPORTUNITY ACT BEFORE THE RECOMMENDATION,VERY SHORT OVERVIEW. SO JUST TO GIVE YOU A LITTLE BACK UP OF US ALSO AS AN AGENCY, WE WERE THE ONLY NON-REGULATORY FEDERAL AGENCY THAT PROMOTES POLICIES AND COORDINATES WITH EMPLOYERS IN LEVELS GOVERNMENT TO INCREASE WORKPLACE SUCCESS FOR PEOPLE WITH DISABILITIES. ALL PEOPLE WITH DISABILITIES INCLUDING PEOPLE WITH SIGNIFICANT DISABILITIES. SO ODEP WEBSITE IS ON HERE AND THERE ARE ALSO LINKS TO OUR CAMPAIGN FOR DISABILITY EMPLOYMENT AND EVERY FALL WE HAVE A NEW THEME FOR THE NATIONAL INSTABILITY EMPLOYMENT MONTH IN OCTOBER SO NEXT FALL WE WILL BE SEEING MORE INTEGRATION ABOUT THE NEXT WHAT WE CALL ENDING. SO TO GIVE YOU A BACKDROP ON THE SPACE AUTISM AND EMPLOYMENT MANY OF Y'ALL KNOW THIS BUT I WANTEDDED TO GO OVER BRIEFLY, THERE'S BARRIERS TO EMPLOYMENT ACCESS FOR AUTISTIC PEOPLE ACROSS THE WHOLE LIFE COURSE AND I BELIEVE RELATE TO THAT DIRECTLY THROUGH MY COLLEAGUE AND FRIENDS AND PERSONALLY AUTISTIC WHO HAS EXPERIENCE MANY SUBSTANTIAL BARRIERS IN MY OWN CASE ON EDUCATION AND EMPLOYMENT AND SO IT'S BOTH UNEMPLOYMENT AND UNDEREMPLOYMENT. MUCH HIGHER AAMONG SOME BECAUSE SOCIETAL STIGMA, SOCIAL RELATED CHALLENGES, ET CETERA, THERE ARE MANY DIFFERENT FACTORS BUT ALL CONVERGES THE UNEMPLOYMENT OR UNDEREMPLOYMENT IS HIGHER, THERE'S ACCESS TO WORKPLACE LEARNING AND CAREER DEVELOPMENT FOR AUTISTIC YOUNG ADULTS. WORKPLACE SELF-DECLOSURE ISSUES AUTISTIC ADULTS ARE FEARFUL AND IN THE WORKPLACE BECAUSE OF REMAINING STIGMA AROUND AUTISM WE HEAR AROUND IN SOCIETY THAT'S CHANGED MUCH I WOULD SAY THE LAST SEVERAL YEARS E THAT'S STILL PREVALENT AND FOLKS REALLY BENEFIT FROM SUPPORT BUT DON'T ALWAYS HAVE THE REPORT TO SELF-ADVOCATE ON THINGS LIKE BODY LANGUAGE AND EYE CONTACT. ALONGSIDE THAT ARE IMPROVEMENTS IN CAREER PATHWAY SYSTEM WORK FORCE DEVELOPMENT ARE PEOPLE WITH ALL DISABILITIES INCLUDING AUTISTIC YOUNG PEOPLE AND ADULTS. THERE WAS A JOURNAL ARTICLE THAT CAME OUT LAST YEAR FROM RESEARCHERS AT NYU THAT LOOKED QUALITATIVELY AT VOCATIONAL INTERESTS OF -- FOCUS INTEREST OF AUTISTIC PEOPLE AND HOW IT CAN RELATE BACK TO EMPLOYMENT, CAN HELP DRIVE THE LONG TERM CAREER DEVELOPMENT AND BE CENTERED AROUND THAT. SO THAT'S STUDY AND SOME OTHER LITERATURE I POINTED TO THAT WE NEED TO BE FOCUSING ON STRENGTHS OF AUTISTIC PEOPLE AND OTHERS WITH DISABILITIES AND INCREASING ACCESS TO COACHING PEER MENTORING AND OTHER SUPPORTS. SO THE WORK FORCE INNOVATION OPPORTUNITY ACT IMPROVES EMPLOYMENT ACCESS FOR EVERYONE. INCLUDING PEOPLE WITH DISABILITIES. THIS IS A LAW SIGNED INTO LAW A FEW YEARS AGO, JULY 22ND, 2014 WHICH EMPHASIZING STRONGLY COMPETITIVE INTEGRATED EMPLOYMENT FOR PEOPLE INCLUDING YOUTH AND ADULTS WITH DISABILITIES. SUPPORTED EMPLOYMENT FOR DISABILITIES AS WELL AS MAJOR, MAJOR FOCUS ON ALIGNING WITH ALL THE OTHER SERVICES SYSTEMS EDUCATION, THAT HEALTHCARE, ALL THE OTHER SYSTEMS AND OTHER FEDERAL AGENCIES AN STATE AGENCIES IS COORDINATING TOGETHER ON NOT ONLY CURE ACCESS FOR PEOPLE WITH AND WITHOUT DISABILITIES BUT ALSO EMPLOYMENT RELATED SUPPORTS ON HOUSING HEALTHCARE, ET CETERA BECAUSE YOU NEED TO BE ABLE TO HAVE FULL HEALTH AND WELLNESS TO BE ABLE TO GO TO WORK AND HAVE SOME PLACE TO LIVE FOR INSTANCE TO BE ABLE TO GO TO WORK AND EMPHASIS OF BUSINESS ENGAGEMENT TO FURTHER DEVELOP CAREER PATHWAYS. SO PARTICULARLY WIOA GREATER PROMOTE ACCESS FOR YOUTH CAN DISABLES THERE'S A MAJOR FOCUS INCLUDING TRANSITION SERVICES FOR WITH DISABILITIES, PRE-ETS UNDER WIOA. THIS IS STUDENT WITH DISABILITIES 14 TO 21 WHO HAVE ELIGIBILITY UNDER INDIVIDUALS WITH DISABILITIES EDUCATION ACT, SPECIAL EDUCATION OR REHABILITATION ACT SECTION 5 O 04, SO FOUR SERVICE AREAS, JOB EXPERT RATION AND COUNSELING AN WORKPLACE LEARNING, COUNSELING ON EDUCATION AN TRAINING, INSTRUCTION SELF-ADVOCACY SKILL DEVELOPMENT AND WORKPLACE READINESS TRAINING DEVELOP SOCIAL SKILLS INDEPENDENT LIVING SKILLS WHICH RELATES BACK DIRECTLY TO SOCIAL EMOTIONAL LEARNING FOR YOUTH AND ADULTS, ALIGNED PART OF OUR FOCUS AT ODEP AND I, YOUTH TEAM AT ODEP, SO THESE ARE RELYING WITH LARGE PART OF WORK IMPROVING POLICIES IS AN PRACTICES. SECTION 511 OF WIOA EMPLOYMENT BY PRIORITIZING COMPETITIVE INTEGRATIVE EMPLOYMENT FOR YOUTH AGE UNDER 24, SO IT EMPHASIZES THAT AS OPPOSED TO PAYING LESS THAN MINIMUM WAGE, NOT GOING TO GET INTO IT ON DETAIL BUT THERE ARE STILL ALLOWABLE OPTIONS FOR BELOW MINIMUM WAGE UNDER FAIRLY BOAR STANDARDS ACT AND THERE MAYBE IN THE FUTURE POTENTIAL CHANGES OR SHIFTS THERE DEPENDING ON WHAT HAPPENS BUT WIOA AT LEAST FOR YOUTH WAS EMPHASIZING PARTICULARLY IMPROVED COMPETITIVE INTEGRATED EMPLOYMENT ADS OPPOSED TO SETTINGS LESS THAN MINIMUM WAGE SO THERE'S THREE CRITERIA THAT MUST BE METAPHOR YOUTH TO ACTUALLY NOT BE COMPETITIVE INTEGRATED EMPLOYMENT IS ASSUME FOR YOU, IF RECEIVING PRE-IMEMPLOYMENT TRANSITION SERVICES, APPLYING FOR SERVICES APPROXIMATE DEEMED INELIGIBLE OR CASE CLOSURE WITHOUT SUCCESSFUL PROGRESS TOWARD EMPLOYMENT OUTCOMES AN RECEIVING CAREER COUNSELING AND INFORMATION REFERRAL TO OTHER PROGRAM OVERING EMPLOYMENT RELATED SERVICES SO AS YOU CAN SEE THERE'S EXTENSIVE ARRAY OF EMPHASIS ON EMPLOYMENT SUPPORTS AND SERVICES ACROSS THE BOARD. REALLY EMPHASIZED FOR ALL DISABILITIES INCLUDING WITH SIGNIFICANT DISABILITIES. WIOA SUPPORTS EQUAL OPPORTUNITY ACCESS INCLUDING FOR I HAVE HERE ON BOTH DISABILITY AS WELL AS OTHER ASPECTS OF RACE, COLOR, RELIGION, SEX, NATIONAL ORIGIN, ET CETERA. THERE'S A GUIDE THAT ONE LEAD PUT OUT ON SECTION 188 ONLINE Y'ALL IF YOU WOULD LIKE TO CAN READ AFTERWARDS THAT IS AVAILABLE AT LEAD CENTERS WEBSITE. WIOH CHARGED THE ADVISORY COMMITTEE ON INCREASING COMPETITIVE INTEGRATED EMPLOYMENT FOR INDIVIDUALS WITH DISABILITIES. WE WILL SAVE THE COMMITTEE TO SHORTEN THAT HERE AND ODEP SUPPORTED COORDINATION OF THE COMMITTEE'S ACTIVITIES THAT HAD TEN MEETINGS BETWEEN 2015 AND 2016 DOSIMETRY AND THE FINAL REPORT OF THE COMMITTEE WAS RELEASED TO CONGRESS IN 2016. IT HAS -- ANDY WILL BE SHARING THE RECOMMENDATIONS. >> I CAN SEE THIS BETTER UP HERE. MY NAME IS ANDY, I'M SO HAPPY TO BE PRESENTING WITH YOU. I'M JUST GOING TO GO OVER THESE RECOMMENDATIONS REALLY QUICKLY. INCREASING COMPETITIVE INTEGRATED EMPLOYMENT WILL REQUIRE CAPACITY BUILDING. CAPACITY BUILDING FOR YOUTH, CAPACITY BUILDING THROUGH CHANGES AND USE OF OVERSIGHT OF 14 C CERTIFICATES. CAPACITY BUILDING IN THE MARKETPLACE, CAPACITY BUILDING ON SPECIFIC FEDERAL AGENCIES INCREASING COMPETITIVE INTEGRATIVE EMPLOYMENT FOR ABILITY 1 PROGRAM THEN IN ORDER TO HAVE A MORE SYSTEMIC CAPACITY FOR -- >> INTEGRATED EMPLOYMENT. >> THANK YOU, SCOTT. CIE WHICH WE ALWAYS USE SO MANY ACRONYMS IN THE GOVERNMENT SO USED TO SAYING IT THERE NEEDS TO BE GUIDANCE POLICIES AND STRATEGIES TO PRIORITIZE FEDERAL FUNDING FORKS CIE AND DATA COLLECTION AND ANALYSIS REQUIREMENTS FOR FEDERAL FUNDING BASED ON COMMON DEFINITION OF C IA AND OUTCOMES. FUNDING AND INITIATIVES FOR BUILDING CIE DEVELOP NATIONAL STANDARDS FOR PROFESSIONAL AND TRADE PROFESSIONALS FOR SKILL FACILITATING CIE. THE FEDERAL INTERAGENCY TASK FORCE FOCUSED ON POLICIES TO EXPAND CAPACITY OF CIE AND ECONOMIC SELF-SUFFICIENCY. THEN CAPACITY BUILDING FOR YOUTH. THIS IS A HUGE FOCUS FOR US AT ODEP WE HAVE A WHOLE TEAM DEDICATED FOR YOUTH CAPACITY BUILDING. AND EARLY WORK EXPERIENCE IS CRUCIAL, FAMILY INVOLVEMENT AND SUPPORT IS CRUCIAL, PROFESSIONAL DEVELOPMENT AND TRAINING, SYSTEMS INTEGRATION AND SEAMLESS TRANSITION WHICH MEANS ALL IS THE SYSTEMS HAVE TO BE WORKING TOGETHER IN ORDER TO MEET THAT GOAL WHICH IS SORT OF THE CRUX OF WEOA IS LEVERAGING RESOURCES AVAILABLE TRANSFERABLE ASSISTIVE TECHNOLOGY. SO THAT'S HUGE TOO. IF WE DON'T HAVE THE TECHNOLOGY AND RESOURCES FOR YOUTH TO ACCESS SERVICES THEY DON'T GET UTILIZED SUCCESSFULLY. CAPACITY BUILDING THROUGH CHANGES AND USES OF OVERSIGHT, 14 -- I THOUGHT YOU WERE GOING TO GO OVER THIS SECTION. IS THAT CORRECT? >> I ACCIDENTLY -- WE (OVERLAPPING SPEAKERS) >> HE DID MY BEGINNING AND I'M DOING HIS END. >> I MADE A MISTAKE AT THE BEGINNING AND THAT'S WHY I FLIPPED TO -- WOULD YOU RATHER I DO THE REST OF THE RECOMMENDATION? >> YOU CAN DO THIS PART AND THEN I CAN GO AT THE VERY END WHEN WE TALK ABOUT THE COMMITTEE. PERFECT. >> OKAY. >> I THOUGHT -- THERE YOU GO. IT'S GOOD. WE'RE ON TRACK. >> THE SORRY ABOUT THAT. >> NO WORRIES. >> SOMETIMES WHEN I GET NERVOUS I DO SILLY THINGS. SURE Y'ALL HAVE DONE THAT WITH YOUR PRESENTATIONS. SO THE -- I WILL SHARE THE REST OF THE RECOMMENDATIONS, CAPACITY BUILDING FOR CHANGES IN THE USE AN OVERSIGHT OF 14 C CERTIFICATES. I WON'T GET INTO TOO MUCH BUT THIS IS BASICALLY WHAT THE PROVISIONS, THE PARTS OF THE FEDERAL -- THE FAIRLY BOAR STANDARDS ACT THAT ALLOWS FOR PAYING OF WAGES BELOW THE FEDERAL MINIMUM WAGE SO THE COMMITTEE WAS -- IS RECOMMENDING AMENDING THAT LAW TO ALLOW FOR MULTI-YEAR WELL PLANNED PHASE OUT OF SECTION 14C. THE WAGE AND HOUR DIVISION OF DOL DEPARTMENT OF LABOR WHICH ENGAGE IN MORE OVERSIGHT OF CURRENT USE OF 14C AND GOVERNMENT, FEDERAL GOVERNMENT STATES WITH BUILDING CAPACITY OF SERVICES SYSTEMS TO ENSURE COMPETITIVE INTEGRATED EMPLOYMENT AS ALTERNATIVE TO 14C SO NOT JUST RECOMMENDING THE PHASE OF RECOMMENDING WE HAVE THE INFRASTRUCTURE IN PLACE IS WHAT THE COMMITTEE IS SAYING TO GO ALONGSIDE THE PHASE OUTS. BUILDING CAPACITY IN THE MARKETPLACE TO INCREASE COMPETITIVE INTEGRATED EMPLOYMENT REQUIRE MORE EFFECTIVE COMMUNICATION OUTREACH TO BUSINESSES PROFESSIONAL DEVELOPMENT FOR SERVICES PERSONNEL, WORK INCENTIVES TO SUPPORT ACCESS TO EMPLOYMENT. AND BENEFITS COUNSELING FINANCIAL COACHING PARTICULARLY IMPORTANT I BELIEVE Y'ALL HAD HAD A PRESENTATION EARLIER ON BENEFITS AND SOCIAL SECURITY AND A LOT OF AUTISTIC ADULTS ARE JUST LIKE OTHER FOLKS WITH DISABILITIES ARE ON BENEFITS SO HAVING THAT BENEFITS COUNSELING AVAILABLE SO FOLKS KNOW WHAT THE SHIFT TO EMPLOYMENT LOOKS LIKE IS PARTICULARLY IMPORTANT SO THEY CAN PLAN OUT AND MAKE SURE THEY THINK REALLY CAREFULLY IN TERMS OF HAVING A THOUGHT OUT CAREER DEVELOPMENT PLAN THAT INCLUDES CURRENT SITUATION AROUND BENEFITS. AS WELL AS FINANCIAL COACHING FOR FINANCIAL LITERACY AND MANAGEMENT. CAPACITY IN THE MARKETPLACE IS THIS INCREASING COMPETITIVE INTEGRATED EMPLOYMENT FOR TRANSPORTATION ACCESS, INITIATIVES IN INDUSTRY INCLUDING HEALTHCARE OUTREACH FEDERAL CONTRACTORS. WHO ARE REQUIRED UNDER SECTION 503 OF THE REHABILITATION ACT TO HAVE AFFIRMATIVE ACTION HIRING PLANS UTILIZATION GOALS TO HIRE MORE PEOPLE WITH DISABILITIES. AS WELL AS REVISION TO THE FEDERAL TAX CREDITS TO EMPLOYERS TO INCENTIVE HIRING PEOPLE WITH DISABILITIES. THE LAST COUPLE OF AREAS SPECIFIC FEDERAL AGENCIES, THAT'S REQUIRE PARTNERSHIPS AN ACTIONS AMONG MULTIPLE AGENCIES. INCLUDING FOR ESTABLISHING ACROSS AGENCY WORKING GROUP TO PROVIDE POLICY GUIDANCE AND TECHNICAL ASSISTANCE ON INTEGRATED DAY AND WRAP AROUND SERVICES. THAT COMPLIMENT AND MAXIMIZE COMPETITIVE INTEGRATED EMPLOYMENT TO ADVANCE SOCIO ECONOMIC STATUS AND SECURITY WITH PEOPLE WITH DISABILITIES. DEMONSTRATING HOW WAIVING REQUIREMENTS TO TICKET TO WORK PROGRAM ENABLE YOUTH RECEIVING SOCIAL SECURITY TO ACCESS SERVICES INCLUDING SSI AND SSDI TO ACCESS SERVICES ACROSS SYSTEMS THAT LEAD COMPETITIVE INTEGRATED EMPLOYMENT AND DEVELOPING A POLICY REFORM INITIATIVE DESIGNED INCREASE NUMBER OF BENEFICIARIES SOCIAL SECURITY TO HAVE ACCESS TO COMPETITIVE INTEGRATED EMPLOYMENT AND ATTAIN SELF-SUFFICIENCY. THE LAST AREA REFORMING THE ABILITY OF ONE PROGRAM SO CREATE MORE OPPORTUNITIES AND COMPETITIVE INTEGRATED EMPLOYMENT ON BROADER SCALE AMENDING THE WAGNER O DAY ACT TO ALIGN WITH MODERN DISABILITY LAWS INCLUDING THE AMERICAN WITH DISABILITIES ACT AND REHABILITATION ACT AND POLICY GOLDSBY REFORMING CRITERIA FOR CONTRACT PROCUREMENT IN SELECTION OF PROGRAM ELIGIBILITY. RESEARCH IN CURRENT USE HOW THE PROGRAM IS SERVING PEOPLE WITH DISABILITY IN TERMS OF STEPS FOR IMPROVING ABILITY TO CREATE COMPETITIVE INTEGRATED EMPLOYMENT AND IMPACT OF REFORMS AND ANDY WILL SHARE SUMMARY OF THE COMMITTEE. >> I WILL GIVE YOU BACK STORY ON THE COMMITTEE. I WAS PRIVILEGED ENOUGH TO BE ASKED BY JENNIFER SHEEHEE TO COME AND PRESENT ON AN INITIATIVE I WAS WORKING ON IN CALIFORNIA. THE COMMITTEE WAS NEW TO ME, I HAD NO IDEA WHAT OFFICE OF DISABILITY EMPLOYMENT POLICY WAS. I KNEW THIS VERY GREAT PANEL ADVOCATES PROFESSIONALS AND FEDERAL PARTNERS WERE COMING TOGETHER WORKING ON SOMETHING REALLY IMPORTANT. SO JENNIFER HAD SAID HEY, WOULD YOU LIKE TO BE -- WOULD YOU LIKE TO COME WORK FOR US. THAT WAS -- IT WAS REAL PRIVILEGE FOR ME BECAUSE I GREW UP WORKING IN THE SYSTEM, WORKING WITH THE INDEPENDENT LIVING CENTERS. AND I GREW UP ACTUALLY IN THE SYSTEMS GROWING UP IN FOSTER CARE AND MOVING OUT OF THE SYSTEM TO COMPETITIVE INTEGRATIVE EMPLOYMENT. WHICH THIS IS WHY I FEEL LIKE THE REPORT AND THE COMMITTEE'S WORK IS SO CRUCIAL BECAUSE IT'S REAL. IT'S REAL IMPLEMENTATION. I GOT TO SEE THAT FIRSTHAND. SO THE WORK ON THE COMMITTEE, IT'S FORMATIONS AND RECOMMENDATIONS INTENDED TO INCREASE OPPORTUNITIES FOR INDIVIDUALS ON DD -- DEVELOPMENTALLY DISABLED OR OTHER SIGNIFICANT OR OTHER SIGNIFICANT DISABILITIES. I HAD CP. ESSENTIALLY I HAVE WHAT'S CONSIDERED A SIGNIFICANT DISABILITY. ENSURING THAT CIE IS THE FIRST OPTION FOR PEOPLE WITH I/GD OR OTHER SIGNIFICANT DISABILITIES TO INCREASE EMPLOYMENT, SO IT'S NOT AN AFTER THOUGHT, IT'S NOT LIKE LET'S GET PEOPLE THE ONLY JOB THEY CAN HAVE. IT'S REALLY LOOKING AT WHAT'S THE MOST SUCCESSFUL TRACK THAT WE CAN PUT -- >> EMPLOYMENT FIRST. >> EMPLOYMENT FIRST. WHICH IS ALSO AN INITIATIVE THAT WE WORK ON. AT ODEP. WHAT IS THE EMPLOYMENT FIRST TRACK THAT WE CAN PUT INDIVIDUALS ON TO MOVE THEM FORWARD. THEN ALSO MAKING SURE THAT THE USAGE OF SECTION 14C CERTIFICATES FOR PAYING MINIMUM WAGE, UTILIZING THE RIGHT WAY, MINIMIZED WHEN THEY CAN BE TO MAKING SURE THAT PEOPLE WITH DISABILITY VERSUS THE BEST OPPORTUNITY FOR SUCCESS AND ECONOMIC ADVANCEMENT. SO CRITICAL PATHWAYS FOR ECONOMIC FUTURE AND DEVELOPING SELF-SUFFICIENCY FOR ALL YOUTH AND ADULTS WITH DISABILITIES. SO NOW WE'RE OPEN FOR QUESTIONS. >> THANK YOU. [APPLAUSE] >> BEFORE WE TAKE QUESTIONS FROM THE COMMITTEE, WOULD YOU LIKE TO ADD ANYTHING TO THE RELATION? MAKE ANY COMMENTS? >> THANK YOU SO MUCH FOR HAVING US, WE REALLY APPRECIATE THIS OPPORTUNITY. I WOULD JUST SAY THAT WE RECEIVED OVER 3,000 COMMENTS FROM THE PUBLIC DURING THE PROCESS. THERE WERE A LOT OF IMPORTANT ISSUES THAT THE COMMITTEE ADDRESSED AND MANY OF WHOM WERE VERY EMOTIONALLY CHARGED ISSUES SO THE COMMITTEE TOOK A LOT -- SPENT A LOT OF TIME WITH OTHER PRESENTATIONS FROM ORGANIZATIONS ON ALL SIDES, ALL ISSUES. THIS DOCUMENT IS NOT JUST HOPEFULLY A REPORT ON A SHELF AND WHILE WE DON'T AS THE DEPARTMENT OF LABOR OF COURSE REPRESENT THE RECOMMENDATIONS, I KNOW THE COMMITTEE MEMBERS ARE ANXIOUS TO WORK WITH ORGANIZATIONS TO REALLY INCREASE INTEGRATED EMPLOYMENT OPPORTUNITIES TO THE EXTENT THAT THEY CAN. >> THANK YOU. WE APPRECIATE THE WORK OF THAT COMMITTEE. YOU HEARD THIS MORNING HOW IMPORTANT THIS ISSUE IS TO INDIVIDUALS WITH AUTISM AND IT'S BEEN A GROWING FOCUS ON THIS COMMITTEE TO FOCUS ON ADULTS AND SUPPORTED EMPLOYMENT OPPORTUNITIES ARE CRUCIAL IN THAT ENDEAVOR. OTHER COMMENTS OR QUESTIONS FROM ANYONE ELSE OPT COMMITTEE? -- ELSE ON THE COMMITTE? ALL RIGHT. THANK YOU VERY, VERY MUCH. >> THANK YOU. [APPLAUSE] >> NOW I WOULD LIKE TO INTRODUCE OUR NEXT SPEAKER, THE FINAL SPEAKER OF THE MORNING BEFORE WE MOVE TO THE COMMITTEE BUSINESS. AND THAT IS DR. TED BRODKIN, ASSOCIATE PROFESSOR PSYCHIATRY AT THE PERELMAN SCHOOL OF MEDICINE UNIVERSITY OF PENNSYLVANIA WHO WILL TALK TO US ABOUT HIS WORK ON SERVICES RESEARCH FOR ADULTS ON THE AUTISM SPECTRUM. THIS WORK IS FUNDED BY THE NIMH AS PART OF ITS SERVE ASD GRANT PROGRAM. WHICH FUNDS RESEARCHERS TO DEVELOP INNOVATIVE MODELS TO IMPROVE SERVICES FOR CHILDREN TRANSITION AGE YOUTH AND ADULTSEN AUTISM SPECTRUM. THANK YOU FOR JOINING US TODAY. LOOK FORWARD TO HEARING WHAT YOU HAVE TO SAY. >> THANKS VERY MUCH, DR. GORDON AN MEMBERS OF THE COMMITTEE FOR INIT VIEWING, I APPRECIATE THE OPPORTUNITY TO TELL YOU ABOUT THE WORK WE OTHER DOING AT UNIVERSITY OF PENNSYLVANIA. THE TITLE OF THIS BRIEF TALK IS DEVELOPING SERVICES TO ENHANCE SOCIAL FUNCTIONING IN ADULTS WITH AUTISM SPECTRUM DISORDER AND AS THIS AUDIENCE KNOWS VERY, VERY WELL, THE MAIN SYMPTOM DOMAINS THE TWO MAIN SYMPTOM DOMAINS OF AUTISM SPECTRUM DISORDER IS DEFINED BY DSM V ARE NUMBER ONE, SOCIAL INTERACTION SOCIAL COMMUNICATION DOMAIN, NUMBER TWO, THE DOMAIN OF RESTRICTIVE STEREOTYPE PATTERNS OF BEHAVIOR AN INTEREST SO I WILL FOCUS ON THE FIRST DOMAIN, SOCIAL INTERACTION AND SOCIAL COMMUNICATION. AND I WILL FOCUS ON THIS IN ADULTS AND TRANSITION TO ADULT HOOD AND ADULTHOOD AND AS WE HEARD THIS MORNING ALREADY, WE JUST HEARD FROM DR. GORDON, THERE'S REALLY SUCH A NEED FOR INCREASING FOCUS ON THE TREATMENT AN SERVICES FOR ADULTS WITH AUTISM SPECTRUM DISORDER AND I KNOW THE COMMITTEE IS FOCUSED ON THAT AND NIMH AS WELL. SO GIVE YOU A SENSE, APPROXIMATELY 500,000 TO 600,000 ADOLESCENTS WITH AUTISM SPECTRUM DISORDER WILL ENTER ADULT HOOD IN THE NEXT DECADE JUST IN THE UNITED STATES OF AMERICA. WHAT ARE SOME OF THE CHALLENGES OF TRANSITION TO ADULTHOOD? TYPICAL CHALLENGES, OF COURSE THIS VARIES THERE'S TREMENDOUS HETEROGENEITY WE HER THIS MORNING. BUT SOME OF THE CHALLENGES MIGHT INCLUDE COMPLETING SECONDARY OR POST SECONDARY EDUCATION, TRANSITIONING FROM EDUCATIONAL TO WORK SETTING DEVELOPING SOCIAL SKILLS NECESSARY FOR ADULT LIFE WHICH ARE ACTUALLY QUITE -- THERE'S QUITE A BIT MORE SOCIAL DEMAND THAN SUBTLETY INVOLVED IN ADULT INTERACTIONS. ENGAGING WITH PEERS IN THE COMMUNITY, DEVELOPING INDEPENDENCE AND ABILITY TO FUNCTION ONCE ONE'S PARENTS BECOME ELDERLY OR PASS AWAY AS WE HEARD ABOUT THIS MORNING AS WELL. I WOULD ARGUE DIFFICULTIES WITH SOCIAL FUNCTIONING, HEIGHTEN ALL THESE CHALLENGES OF TRANSITIONING TO ADULT HOOD AND MAYBE PERHAPS A KEY CHALLENGE, DIFFICULTIES WITH SOCIAL FUNCTIONING AND THERE'S TREMENDOUS LACK OF EVIDENCE BASED TREATMENT PROGRAMS TO IMPROVE SOCIAL FUNCTIONING IN ADULTS. SO THAT'S WHAT THIS PROJECT FUNDED BY NIMH IS TRYING TO ADDRESS. JUST TO GIVE A LITTLE BIT MORE A SENSE OF THE NEED HERE, THIS IS FROM A PAPER FROM PATRICIA HOWLING IN THE UK IN 2013 LOOKING AT SOCIAL OUTCOMES AND ADULT ON THE AUTISM SPECTRUM. THIS I WILL POINT OUT IS SOCIAL OUTCOMES MID TO LATER ADULTHOOD AN AVERAGE NON-VERBAL IQ AS CHILDREN SO THIS IS NOT AN INTELLECTUALLY DISAGED GROUP, THIS IS ABLE GROUP ON THE AUTISM SPECTRUM, THERE'S A LOT OF NUMBERS BUT FOCUS ON THE NUMBERS, I HAVE A POINTER HERE. IN THE PARENTHESES THAT GIVES PERCENTAGES SO FOR EXAMPLE, OF THIS SAMPLE, 63% NEVER HAD HAD ANY PEER RELATIONSHIP INVOLVING SELECTIVITY OR SHARING. 77% HAD NEVER HAD A RECIPROCAL RELATIONSHIP, CLOSE RELATIONSHIP INTIMATE RELATIONSHIP, LOOK AT EMPLOYMENT OUTCOMES IN THE SAME SAMPLE, 55% HAD NEVER WORKED IN ANY KIND OF SETTING, SHELTERED WORKSHOP OR SUPPORTED EMPLOYMENT SO THIS REALLY HIGHLIGHTS THE LEVEL OF NEED AND THE IMPORTANCE OF THIS TOPIC. AS I WAS ARGUING I THINK THAT SOCIAL FUNCTIONING IS A CRUCIAL COMPONENT OF THESE DIFFERENT ABILITIES FUNCTIONING IN ADULT LIFE. WHEN I SAY SOCIAL FUNCTIONING WHAT DO I MEAN? GIVE DEFINITION THE ABLE TO NAVIGATE THE SOCIAL WORLD AND QUOTE UP QUOTE REAL WORLD SETTINGS INCLUDING HOME SCHOOL WORK IN THE COMMUNITY. SO THIS IS NOT JUST A LABORATORY MEASURE OF SOCIAL COGNITION BUT THIS IS SOCIAL FUNCTIONING AND REAL LIFE. DIFFICULTIES WITH SOCIAL FUNCTIONING LIKE MENTION CITED AS ONE OF THE MAIN BARRIERS TO EMPLOYMENT INDEPENDENCE AND FUNCTIONING IN ADULTS. THE THING ABOUT SOCIAL FUNCTIONING IS IT'S COMPLEX, IT INVOLVES A TREMENDOUS REPERTOIRE OF BEHAVIORS THAT TYPICALLY DEVELOPING FOLKS TAKE FOR GRANTED. SO FOR THE PURPOSES OF THIS PROJECT WE BROKE IT DOWN INTO THREE MAIN DOMAINS, WE CALL THEM SOCIAL FUNCTIONING. THE FIRST DOMAIN YOU MIGHT CALL MOTIVATIONAL EMOTIONAL DOMAIN. SO SOCIAL MOTIVATION, BASIC MOTIVATION TO ENGAGE WITH OTHER PEOPLE, AND ALSO ANXIETY, WE ALL HAVE SOME DEGREE OF SOCIAL ANXIETY BUT DO WE HAVE THE ABILITY TO REGULATE THAT ANXIETY SO THAT INTERACTING WITH OTHERS IS NOT INTOLERABLE. THE SECOND IS COG ANYTHING AND SKILL. SO BASIC UNDERSTANDING OF RELATIONSHIPS SOCIAL COMMUNICATION, SOCIAL QUEUES BACK AND FORT BETWEEN PEOPLE, AND SOCIAL SKILLS SO NOT JUST INTELLECTUAL UNDERSTANDING OF THOSE COMMUNICATIONS BUT ABILITY TO IMPLEMENT COMMUNICATION AN INTERACT WITH OTHERS. THIRD IS CONTEXT AND COMMUNITY DOMAIN. UNDERSTANDING THAT COGNITION AND SKILLS AND ACTUALLY BEING ABLE TO GENERALIZE THEM TO REAL WORLD COMMUNITY SETTINGS AND DIFFERENT CONTEXT. SO ALL THESE ARE REALLY NECESSARY, WE THOUGHT, FOR TRUE SOCIAL FUNCTIONING. AND KIND OF INTERVENTION NARROWLY FOCUSED ON ONE ASPECT OF SOCIAL COGNITION, WE ARE SKEPTICAL WOULD BE SUFFICIENT TO ADDRESS ALL THIS. AND ALSO BECAUSE OF HETERO JENNA ITY WE'RE FAMILIAR WITH, WE KNOW SOME INDIVIDUALS MAYBE MORE DIFFICULTIES IN THESE AREAS THAN OTHERS, SOME HAVE PROMINENT SOCIAL ANXIETY, OTHERS MAY NOT. OTHERS MAY HAVE MUCH MORE DIFFICULTY WITH CERTAIN ASPECTS OF SOCIAL COGNITION AND OTHERS MAY NOT. SO WE NEED TO DEVELOP SOMETHING TO ADDRESS DIFFERENT DOMAINS. SO AS DR. GORDON MENTIONED WE'RE LUCKY ENOUGH TO GET R-34 GRANTEN FROM NEMH 2014 TO 2017, AND THE OBJECTIVE TO PILOT IMPROVE FUNCTIONING WITH ADULTS WITH ARCSD. WE DESIGN THIS PROGRAM TO ADDRESS THESE THREE MAIN COMPONENTS THAT I JUST TOLD YOU ABOUT OF SOCIAL FUNCTIONING. OUR STRATEGY FOCUS ON THE FUNDAMENTALS OF SOCIAL FUNCTIONING SO RATHER THAN FOCUSING ON VERY APPLIED IN A PARTICULAR KIND OF SOCIAL ACQUISITION LIKE THIRD DATE WHAT YOU SAY. WE FOCUS ON FUNDAMENTALS, SO THINGS LIKE TUNING IN TO OUR OWN STATE AND THE STATE OF OTHER PEOPLE, TO UNDERSTAND AND NAVIGATE EMOTIONS. THE ABILITY TO UNDERSTAND AND NAVIGATE WHAT'S GOING ON IN A CONVERSATION AND GENERALIZE THESE SKILLS. AND IF THIS SEEMS A LITTLE VAGUE I'LL GET INTO THE DETAILS IN A FEW SLIDES WHAT THIS REALLY INVOLVES. THE TREATMENT PROGRAM INCORPORATES A VARIETY OF TOOLS, ELECT TICK TREATMENT PROGRAM -- ECLECTIC TREATMENT PROGRAM, NOT A NARROWLY CERTAIN TREATMENT ORIENTATION BUT INCLUDES ELEMENTS OF COGNITIVE THERAPY, BEHAVIORAL OR AVA TYPE THERAPY AS WELL AS MINDFULNESS BASED APPROACHES AND WOVEN TOGETHER. IN ONE INTERVENTION. THE OUTLINE OF THE FLOW OF THE STUDY WAS WE WENT THROUGH A PHASE OF DETERMINATION OF ELIGIBILITY. PRE-TREATMENT ASSESSMENTS WHICH I WILL TELL YOU MORE ABOUT. THREE MAIN COMPONENTS WHICH MIRROR THOSE DEMAINS OF SOCIAL FUNCTIONING SO COMPONENT ONE, CONSISTED OF FIVE WEEKLY INDIVIDUAL SESSIONS. ON SOCIAL MOTIVATION AND ANXIETY. MORE DETAIL ON EACH. SO IN TERMS OF MOTIVATION WE ADDRESS WHAT THE PERSON'S GOALS WAS AND MOTOR DIVISION. WE HAD ELEMENTS OF COGNITIVE COACHING, EXPOSURE TO SOCIAL INTERACTION AND MINDFULNESS. INTERVENTIONS. IN COMPONNT TWO, SOCIAL COGNITION AND SKILL, WE HAD EIGHT WEEKLY GROUP SESSIONS DIDACTICS ON SOCIAL COGNITION AND SKILL TRAINING USING VIDEO MODELING OF SOCIAL SKILLS. IN COMPONENT THREE THE GENERALIZATIONS TO COMMUNITY WE HAD FOUR WEEKLY SESSIONS THAT INVOLVE PARTICIPATION IN A VOLUNTEER WORK TEAM AND WHEN THIS WAS OVER WHICH TOOK 17 WEEKS WE HAD POST TREATMENT ASSESSMENT. SO THANK YOU ETCH EACH OF THOSE IN MORE DETAIL. IN TERMS OF ELIGIBILITY, WHAT THE RFA FROM NIMH WAS ABILITY INVOLVING ADULTS AGE 18 AND OLDER WITH DIAGNOSIS OF AUTISM SPECTRUM DISORDER, FOR FIVE MONTH TREATMENT PERIOD. EXCLUSION CRITERIA FOR THIS PARTICULAR STUDY, I WILL SAY MORE THAT INTELLECTUAL SEVERE PSYCHOTIC SYMPTOMS CURRENT SEVERE MOOD SYMPTOMS SUBSTANCE ABUSE OR RECENT SUICIDE OR AGGRESSIVE BEHAVIORS SO THE INTELLECTUAL DISABILITY PART. THIS PARTICULAR INTERVENTION WAS DESIGNED FOR MORE INTELLECTUALLY ABLE INDIVIDUALS ON THE SPECTRUM BUT ONE FUTURE DIRECTION IS TOMOID PHI AND TAILOR FOR INTELLECTUALLY DISABLED INDIVIDUALSES. THE SETTING IS THE PERELMAN SCHOOL OF UNIVERSITY WE HAD GREAT COLLABORATION AND HELP FOR AUTISM RESEARCH AT CHILDREN'S HOSPITAL. SO KUDOS TO BOB SCHULTZ WHO HELPED A LOT. THIS WAS A PILOT STUDY. WE HAD I'M GOING TO PRESENT DATA ON TWO COHORTS OF 20 PEOPLE, THIS IS THE BREAK DOWN, YOU CAN SEE IT'S PREDOMINANTLY MALE AND WE'RE NOT HAPPY WITH THE DIVERSITY OF THIS SAMPLE AND WE HAVE PLANS FOR WAYS TO INCREASE DIVERSITY WHICH I WILL TELL YOU MORE ABOUT IN FUTURE LARGER STUDIES. IN TERMS OF STUDY DESIGN AND TIME LINE, SORT OF LIKE A DIAGRAM WHAT THE STUDY FLOW WAS, HERE WAS RECRUITMENT ELIGIBILITY DETERMINATION, WE HAD ROUND ONE ASSESSMENT I WILL TELL YOU ABOUT WE HAD 17 TREATMENT PERIOD. DURING THIS FIRST 17 WEEKS COHORT ONE UNDERWENT TREATMENT AND COHORT 2, UNDERWENT TREATMENT AS USUAL, THEY HAD THEIR USUAL WHATEVER TREATMENT WAS IN THE MOWNTY. AT TIME 2 WE HAD A SECOND ROUND OF ASSESSMENTS AND THEN IN THE NEXT PERIOD THE TWO COHORTS FLIPPED SO COHORT ONE WENT BACK TO USUAL TREATMENT IN THE COMMUNITY AND TWO UNDERWENT STUDY TREATMENT AND AT THE END WE HAD A THIRD ROUND OF ASSESSMENTS. WE WERE ACTUALLY TO GET ADDITIONAL INTERNAL FUNDING FROM THE UNIVERSITY OF PENNSYLVANIA TO ALSO RUN TYPICALLY DEVELOPING CONTROLS IN THESE ASSESSENTS WHICH I WON'T PRESENT THOSE BUT THIS IS DEVELOPED OPTIMIZE AND PILOT THE INTERVENTION FOR A LARGER STUDY IN THE FUTURE. WHAT DID OUR ASSESSMENTS CONSIST OF? THIS IS ASHLEY WHO COORDINATED THE STUDY, AND WITH THESE ASSESSMENTS WE ALSO GOT HELP FROM FACULTY MEMBERS AT PENN, MONICA AND JULIA MORRIS AT CENTER OF AUTISM RESEARCH. AND BASICALLY I'M STICKING WITH THIS STRUCTURE OF THESE THREE DOMAINS MOTIVATION ANXIETY, COGNITION SKILLS, GENERALIZATIONS, SO THESE ASSESSMENT BATTERY I WON'T GO THROUGH THESE IN DETAIL BECAUSE I DON'T THINK WE HAVE TIME BUT IF THERE'S QUESTIONS I'M HAPPY TO ANSWER THEM. A SERIES OF ASSESS PES TAPPING INTO EACH DOMAIN THAT WE WERE INTERESTED IN SO ASSESSMENTS OF SOCIAL MOTIVATION, ANXIETY, COGNITION AND ATTENTION, SOCIAL SKILLS WE USE THE CONTEXTUAL ASSESSMENT OF SOCIAL SKILLS. MEASURE OF SIZE OF THE INDIVIDUALS SOCIAL NETWORK AND OVERALL PSYCHOLOGICAL WELL BEING. MANY OF THESE MEASURES COME FROM AUTISM RESEARCH BUT WHAT WE FOUND IS THERE'S REALLY ONE OF THE NEEDS ALSO NEED FOR BETTER MEASURES. OF THESE VARIOUS DOMAINS PARTICULARLY IN ADULTS WITH AUTISM. SOME OF THESE MEASURES WE BORROWED FROM OTHER LITERATURE LIKE OTHER MENTAL HEALTH LITERATURE AND I HAVE BEEN WORKING WITH BOB SCHULTZ BOB AND COLLEAGUES TO OPTIMIZE MEASURES AND YOU MAY HEAR MORE ABOUT THAT LATER TODAY FROM BOB. SO JUST TO TAKE YOU THROUGH THE COMPONENTS OF THE INTERVENTION, COMPONENT ONE, THE ONE FOCUSING ON SOCIAL MOTIVATION AND SOCIAL ANXIETY, WHAT THIS CONSISTED OF IS ONCE WEEKLY HOUR LONG INDIVIDUAL SESSIONS FOR FIVE WEEKS, THIS IS THIS WAS ASHLEY COORDINATOR WHO I MENTIONED EARLIER AND WHAT WE ADDRESSED IN FIVE SESSIONS WERE THESE MAJOR AREAS. ONE WAS WE STARTED OUT REALLY PRACTICAL LOGISTICS. HOW ARE YOU GOING TO GET TO THE SESSIONS. WE'RE ASKING YOU THE PARTICIPATE IN A 17 WEEK LONG INTERVENTION. LET'S START WITH PRACTICALITIES LIKE DO YOU HAVE A CALENDAR, WHAT IS YOUR TRANSPORTATION GOING TO BE TO THE SESSIONS. THINGS REALLY HAVING TO DO ESSENTIALLY WITH EXECUTIVE FUNCTIONING AND ORGANIZING YOURSELF, SO ON BECAUSE IF YOU DIDN'T SHOW UP YOU WON'T BENEFIT FROM THE PROGRAM. THE SECOND PART WAS BUILDING MOTIVATION. SO SOCIAL MOTIVATION. SO ONE THING I WANT TO SAY ABOUT THAT IS THAT OUR GOAL IS REALLY NOT TO TRY TO TURN EVERYONE INTO AN EXTROUGH VERT, WE DIDN'T -- WE CERTAINLY CERTAINLY RESPECT DIVERSITY AND NOT EVERYONE IS VERY HIGHLY SOCIALLY INCLINED BUT WHAT WE REALLY STARTED WITH WAS SORT OF MORE A MOTIVATIONAL INTERVIEWING APPROACH WHERE WE ASKED THE PERSON WHAT'S IMPORTANT TO YOU, WHAT DO YOU ENJOY DOING, WHAT ARE YOUR GOALS, WE STARTED TO LOOK ATWELL WHEN WE LOOK AT WHAT YOU VALUE AND WHAT YOU WANT FOR YOURSELF, WHERE WOULD IT HELP YOU TO FEEL MORE COMFORTABLE AND CAPABLE WITH INTERACTING WITH OTHER PEOPLE, HOW THAT MIGHT HELP YOU. TO BUILD MOTIVATION IN THAT WAY. OUR FALL BACK IF WE COULDN'T GET BUY IN ON THAT, IF PEOPLE -- PARTICIPANTS REALLY COULDN'T IDENTIFY A BAY WHICH THEY THOUGHT SOCIAL MOTIVATION -- SOCIAL INTERACTION MIGHT BE OF INTEREST OR VALUE, WE SAY WELL, WHAT IF YOU CAN'T AVOID IT? WHAT IF THERE'S CERTAIN SITUATIONS IN LIFE WHETHER YOU LIKE IT OR NOT YOU'RE AROUND OTHER PEOPLE, WOULDN'T IT BE NICE TO FEEL MORE COMFORTABLE, LESS ANXIOUS AN OVERWHELMED THIS THOSE SITUATIONS. THESE WAYS WE TRY TO BUILD MOTIVATION. IN TERMS OF SOCIAL ANXIETY PIECE WE WENT THROUGH A SERIES OF BOTH COGNITIVE APPROACHES THINKING ABOUT THOUGHTS FEELINGS AND BEHAVIOR AND AUTOMATIC THOUGHTS AND SELF-MONITORING OF THEIR OWN FEELING STATE. AND SOME EXERCISES TO LEARN TO REGULATE EMOTION USING MINDFULNESS BASED APPROACHES SO THIS STARTED WITH SOLO EXERCISES, THEY LEARN ABILITY TO FOCUS ON THEIR OWN BREADTH AND CALM THEMSELVES DOWN, INTEGRATE MORE INTO SOCIAL INTERACTION, SO WE HAD CONVERSATIONS AND LISTENING EXERCISES DURING WHICH SIMULTANEOUSLY TRY TO LISTEN THE OTHER PERSON AND REGULATE THEIR OWN EMOTION USING THESE MINDSFULNESS TECHNIQUES. COMPONENT 2 SOCIAL COGNITION AND SKILLS DOMAIN, AS I MENTIONED I THINK EARLIER, THIS WAS EIGHT WEEKLY GROUP SESSIONS, THERE WERE TWO PARTS TO THESE SESSIONS. FIRST WAS DIDACTIC PART 30 MINUTES APPROXIMATE SECOND IS 60 VIDEO MODELING AND PRACTICE OF SOCIAL SKILLS SO THE DIDACTICS WAS SOCIAL COGNITION. UNDERSTANDING SOCIAL INTERACTIONS THINGS LIKE WHERE DO YOU DIRECT YOUR ATTENTION TO GET SOCIAL INFORMATION. WHERE DO YOU LOOK AT THE PERSON'S FACE, HOW DO YOU PICK UP ON FACIAL EXPRESSION QUEUES, BODY LANGUAGE, INTERPERSONAL DISTANCE. PERSPECTIVE TAKING HOW YOU CAN START TO TAKE THE OTHER PERSON'S PERSPECTIVE IN THIS SITUATION. AND THEN AS I MENTIONED, IN THE SOCIAL SKILLS PART USE VIDEO MODELING APPROACH. SO VIDEO MODELING IS AN EVIDENCE BASED INTERVENTION PROVEN EFFECTIVE IN BUILDING SOCIAL SKILLS IN CHILDREN AND ADOLESCENTS WITH ASD. BASICALLY THE APPROACH TO THIS, THIS IS JIM O'CONNELL AND JESSIE DAY WATKINS AT DREXEL, THE COLLABORATORS ON THIS, THE APPROACH WAS WE HAD STUDENTS LARGELY STUDENTS FROM UNIVERSITY OF PENNSYLVANIA WHO WE TRAINED AS ACTORS TO SET UP CERTAIN SOCIAL SITUATIONS THEN SAW WHAT THE PERSON'S NATURAL RESPONSE, THEY KNEW IT WAS AN ARTIFICIAL SITUATION THAT WAS A PRACTICE SITUATION. WE STILL HAVE SAW HOW THEY RESPONDED TO THAT, IF WE FELT THE NEED TO TEACH THEM SOMETHING, A SHORT VIDEO CLIP OF A PERSON DOING THAT SKILL AND SAY TRY IT THIS WAY AND TRY IT AGAIN. SO TO SHOW YOU WHAT THOSE WERE, FOR COMPONENT 2, ON THE LEFT HAND COLUMN, IN THE LEFT MOST COLUMN I HAD THE SESSION NUMBER 1 THROUGH 8. IN THE ID MANYING COLUMN I HAD SOCIAL COGNITION DIDACTICS SO THESE WERE THEMES OF DIDACTICS WE TALK ABOUT, WON'T GO THROUGH THESE AGAIN WITH THE SAKE OF TIME, FOR THE MODELING OF SKILLS WE DID A BASELINE ASSESSMENT, WE LOOKED AT FUNDAMENTAL SKILLS PICKING UP ON QUEUES MAY NOT BE A GOOD TIME TO APPROACH A PAIR OF PEOPLE TALKING OR QUEUES THAT THIS MIGHT BE A GOOD TIME TO APPROACH. LIKE IN A NEATING LIKE THIS, HOW YOU KNOW WHEN TWO PEOPLE TALKING TO EACH OTHER, MAYBE THIS IS NOT A GOOD MOMENT OR MAYBE THIS IS A GOOD MOMENT AND HOW DO YOU INITIATE CONVERSATIONS OR BREAKING THE ICE, ASPECTS OF RECIPROCAL COMMUNICATION, CONVERSATION, LISTENING SKILLS, EMPATHIC RESPONDING AND TRYING TO WEAVE TOGETHER INTO A NATURAL FLOW FROM APPROACHING, GREETING INITIATING CONVERSATION. MAINTAINING A CONVERSATION. SO A HINT OF DATA ON THIS, I WILL SHOW YOU MORE DATA LATER. NOT TOO MUCH LATER BECAUSE I ONLY HAVE A FEW MINUTES LEFT. THIS IS AN EXAMPLE OF DATA WITH ONE OF THESE SKILLS WHICH IS ACQUISITION OF SOCIAL APPROACH AND GREETING SO THIS SHOWS YOU ON THE X AXIS IS THE PROBABILITY OF SUCCESS. WHAT THAT MEANS IS WE HAD MULTIPLE EXEMPLARS FOR EACH ONE OF THESE SESSIONS WE HAD MULTIPLE EXAMPLES OF THE OPPORTUNITY TO CARRY OUT THAT SKILL. AND WE LOOKED AT THE PERCENTAGE OF TIME THEY GOT IT CORRECT ON THE X AXIS. THE Y AXIS IS THE -- WHICH WEEK WE WERE ON, THESE EIGHT WEEKS. AND THE RED LINE IS WHERE WE INTRODUCED THE TREATMENT OF THIS PARTICULAR SKILL. IN OTHER WORDS, THE INTRODUCTION OF VIDEO MODEL AND YOU CAN SEE BEFORE THE RED LINE, BASELINE OF THIS GROUP COHORT ONE WEREN'T DOING WELL, THE PROBABILITY OF SUCCESS WAS ANYWHERE FROM TEN TO 15%. AND THEN WHEN WE INTRODUCE THE VIDEO MODEL, THEIR PROBABILITY OF SUCCESS IN CARRYING OUT THIS SKILL WAS MUCH HIGHER. THEN THE LAST PART OF THE INTERVENTION WAS WHAT WE CALL THE CONTEXT AND COMMUNITY PART OF THE INTERVENTION. SO GENERALIZING THE SOCIAL SKILL AND UNDERSTANDING THEY LEARNED IN THE FIRST PART OF THE EARLIER PART INTERVENTION TO COMMUNITY SETTING SO GOALS PACK PRACTICE NEWLY ACQUIRED SOCIAL UNDERSTANDING OF SKILL IN REAL WORLD SETTING AB PARTICIPATING ON VOLUNTEER WORK TEAM. THE VOLUNTEER WORK WAS DONE AT RONALD MCDONALD HOUSE IN PHILADELPHIA. AND FOR THOSE OF YOU WHO MANY OF YOU MAYBE FAMILIAR BUT IT'S A PHILANTHROPIC ORGANIZATION THAT HELPS FAMILIES WHO HAVE SICK CHILDREN IN THE HOSPITAL BASICALLY SO THEY PROVIDE SORT OF A HOTEL AND MEALS FOR FAMILIES WITH SICK KIDS IN THE HOSPITAL. AND OUR PARTICIPANTS WERE PART OF A VOLUNTEER WORK TEAM THAT WAS BOTH VICTIMS ON SPECTRUM AS WELL AS OTHER FOLKSES WHO WORK TOGETHER TO PREPARE MEALS. THE WAY WE LOOK AT THIS, THIS IS THE PHILADELPHIA RONALD MCDONALD HOUSE. THERE WERE MULTIPLE REASONS WE INCLUDED THIS. NUMBER ONE, IT WAS AN OPPORTUNITY TO GENERALIZE THIS TO A COMMUNITY SETTING. NOT JUST A CLINICAL SETTING. NUMBER TWO, YOU HEARD ABOUT EMPLOYMENT EARLIER, SOME DEPENDS ON THE INDIVIDUAL BUT SOME PEOPLE VICE PRESIDENT HAD WORK EXPERIENCE BEFORE, SO THIS WAS AN OPPORTUNITY THOUGH BRIEF NOT COMPETITIVE HE WANT EMPLOYMENT TO GET A SENSE WHAT IT'S LEAK TO WORK AS A GROUP AND BE -- LIKE TO WORK AS GROUP BE PART OF A WORK TEAM. ANOTHER THING WE WORKED WITH PROFESSOR WHO HAS DONE WORK ON THE BENEFITS OF VOLUNTEER WORK FOR VARIOUS INDIVIDUALS BUT THERE'S A QUITE A BIT OF EVIDENCE FROM OTHER STUDIES, NOT PEOPLE ON THE SPECTRUM THAT INDIVIDUALS WHO ARE SOCIALLY ISOLATED CAN REALLY BENEFIT FROM VOLUNTEER WORK. FOR PEOPLE ON THE SPECTRUM WHO PROBABLY FOR ADULTS TREATED MUCH OF THEIR LIFE AS IF THEY HAVE A DISABILITY IN NEED OF HELP. THIS TURNS ON ITS HEAD IN A SENSE THAT SHOWS WELL YOU CAN ACTUALLY HELP OTHERS LIKE FAMILIES WHO HAVE SICK KIDS IN THE HOSPITAL AND YOU CAN MAKE A MEANINGFUL DIFFERENCE SO PART OF THIS INCLUDED SOME INTRODUCTION IN EDUCATION FOR THEM ABOUT WHAT THIS ORGANIZATION WAS ABOUT AND THE IMPACT OF THAT ARE WORK AND THESE MEALS WERE GOING TO FAMILIES WHO ARE VISITING THEIR KIDS IN THE HOSPITAL. SO ON. THEN AS FOLLOW-UP WE'RE IN THE PROCESS OF RECONTACTING PARTICIPANTS 36, 6, 12 MONTHS FOLLOWING THE END OF THE STUDY SEE WHETHER THEY DECIDE TO CONTINUE TO ENGAGE IN VOLUNTEER WORK, ET CETERA. JUST A LITTLE BIT ABOUT THE DATA. THE DATA I WILL SHOW YOU HERE IN THIS SLIDE IS FROM TIME ONE AND TIME TWO. IF YOU REMEMBER THAT DIAGRAM THE SLIDE THREE TIME POINTS. SO THIS IS REALLY A PRELIMINARY DATA ANALYSIS. A TIME ONE AND TIME TWO, REMEMBER TIME ONE WAS BASELINE FOR EVERYONE. TIME 2, COHORT ONE HAD GONE THROUGH THE INTERVENTION, COHORT 2, TREATMENT AS USUAL, REALLY COMPARING COHORT 1 TO 2. SO THE COHORT THROUGH THE TREATMENT AND COHORT THAT DIDN'T. AND WE'RE LOOKING AT TWO MEASURES ONE IS SOCIAL RESPONSIVENESS SCALE WHICH MANY ARE FAMILIAR WITH, A QUANTITATIVE MEASURE OF AUTISTIC TRAITS DEVELOPED BY JOHN CONSTANTINEO AND WE FOUND THE HIGHER THE SRS SCORE THE MORE SYMPTOMATIC SOMEONE IS. WE FOUND THAT COHORT 1 THAT WENT THROUGH THE TREATMENT, LOOK AT PERCENT CHANGE FROM BASELINE, COHORT ONE HAD A SIGNIFICANT REDUCTION IN THEIR SRS SCORE RELATIVE TO COHORT TWO. WHICH WAS GOOD. THAT'S WHAT WE WERE HOPING. THEN WHEN WE LOOK AT THE SOCIAL NETWORK INDEX, BASICALLY A QUESTIONNAIRE ASSESSING NUMBERS OF PEOPLE IN THEIR SOCIAL NETWORK AND THEIR DAY TO DAY LIFE. AGAIN, A SIGNIFICANT DIFFERENCE BETWEEN COHORT ONE AND TWO, WHERE COHORT ONE SEEMED A SIGNIFICANT INCREASE IN SOCIAL NETWORK INDEX. THIS IS A VERY COMMITTED SAMPLE SIZE, PRELIMINARY ANALYSIS. WE'RE ALSO PRESENTING THIS AT MFAR BUT IT'S A TASTE THAT PERHAPS THIS IS HAVING A GOOD EFFECT BUT WE NEED MORE DATA. SO FUTURE DIRECTIONS TO COMPLETE DATA ANALYSIS FOR ONE AND TWO, REFINE PROCEDURES BASED ON EXPERIENCE AND DATA FROM PILOT STUDY. AND THEN APPLY PROBABLY TO NIMH FOR LARGER SCALE CLINICAL TRIALS WITH LARGER NUMBERS OF PARTICIPANTS TO MORE FULLY TEST THE TREATMENT AND THE BIG IF, IF IT'S EFFECTIVE, TO THINK ABOUT DISSEMINATING THE COMMUNITY MENTAL HEALTH PROVIDERS. THIS IS A WAY WE CAN MAKE OUR PARTICIPANT POOL MORE DIVERSE, I HAVE BEEN WORKING WITH DAVID MANNDELL UNIVERSITY OF PEN OPINION AND WE DEVELOPED PARTNERSHIPS WITH LOCAL COMMUNITY HEALTH CENTERS AND WE CAN RECRUIT A DIVERSE SET OF PARTICIPANTS. FOR LARGER STUDIES TO DEVELOP ADVANCED MODULES FOR SOCIAL UNDERSTANDING AN SKILLS AND DEVELOP A PROGRAM IN THE FUTURE MORE SUITABLE FOR DO INTELLECTUALLY DISABLED PARTICIPANTS. SO I HAVE TWO MINUTES LEFT FOR QUESTIONS BUT I REALLY QUICKLY OUR TEAM ASHLEY I MENTIONED WHO COORDINATED THE STUDY AND WE HAD TERRIFIC SET OF COLLABORATORS SOME AT UNC LIKE GABRIEL DICTOR BOB SCHULTZ AND SEVERAL AT THE RESEARCH CENTER AT CHOP. SO WE'LL LEAVE IT THERE ABOUT SEE IF THERE'S IN I -- ANY QUESTIONS. >> THANK YOU, DR. BRODKIN. PLEASE USE YOUR MIC. GO AHEAD. >> WITH THE STUDY THAT YOU JUST PRESENTED, I WOULD LIKE TO OFFER A QUICK COMMENT. FIRST OF ALL, ABOUT SOMETHING THAT BOTHERS ME MORE AND MORE ABOUT THESE PRESENTATIONS. OF STUDIES. SCIENTISTS OFTEN SEIZE UPON PHRASES OR STATISTICS THAT BECOME BOILERPLATE IN THINGS THAT WE TELL PEOPLE. AND ARE SOMETIMES MISLEADING. AT THE START OF YOUR STUDY, YOU HAD THIS SLIDE THAT SAID 5 UX, 6 UNHUNDRED THOUSAND TEENAGERS WILL BECOME AUTISTIC ADULTS IN THE NEXT FEW YEARS. AND WHAT BOTHERS ME ABOUT THAT, IS IT'S A FEAR MONGERING THING AND FRANKLY IS MEANINGLESS WHAT WE KNOW IS THAT FOR EVERY $500,000 AUTISTIC PEOPLE AUTISTIC CHILDREN WHO BECOME ADULTS IN THE NEXT FEW YEARS, 445,000 OR 495,000 OR WHATEVER THE NUMBER IS, OLDER AUTISTIC ADULTS WILL DIE. SO THE RATE OF INCREASE OF AUTISTIC ADULTS IS NOT 500,000, IT'S THE RATE OF INCREASE IN THE POPULATION PLUS WHATEVER RATE OF CHANGE MAYBE IN AUTISM IN OUR COUNTRY. IT'S A TINY FRACTION OF THAT NUMBER. SO TO SAY THAT IS DISINGENUOUS AN IT IS TOTALLY DISRESPECTFUL TO OLDER AUTISTIC PEOPLE THAT MAKE US APPEAR AS IF WE DON'T EXIST. MY QUESTION ABOUT THIS PARTICULAR STUDY, IS YOU GOT WHAT APPEARED TO BE TO BE CONSTRUCTIVE BENEFICIAL RESULTS. THAT WOULD IN MY OPINION BEAR SUPPORT TO SEE IF WE CAN MAKE SOMETHING MORE. BUT WHEN I LOOK AT WHAT YOU DID AS FAR AS HOW YOU STRUCTURED IT, IT READ TO ME AS IF YOU STRUCTURED A STUDY FOR LATE TEEN YEARS OR VERY YOUNG ADULTS. I WOULDN'T REGARDED THE GOALS AND APPROACHES IS APPROPRIATE FOR ME AS A 60-YEAR-OLD AUTISTIC PERSON AND THEREFORE I DON'T THINK YOU DID ADULT AUTISM STUDY YOU DID SPECIFICALLY YOUNG ADULT AUTISM STUDY. AND I THINK WE NEED TO DISTINGUISH THAT CLEARLY. AND THE REASON THAT'S IMPORTANT TO ME TO KEEP HAMMERING THIS IS ALMOST EVERY OTHER ISSUE OF THE MIND, DISEASE, DISORDER THAT NIH IS INVOLVED WITH, LEADERSHIP OF AGENCIES ARE OLDER PEOPLE. THEY ARE RIGHTLY CONCERNED ABOUT THINGS THAT HAPPEN TO OLDER PEOPLE SO WE HAVE OLDER PEOPLE HAVING OVERSIGHT OVER STROKE, HEART DISEASE, DIABETES, CANCER, WHAT HAVE YOU. AND AUTISM, WE HAVE VERY YOUNG SELF-ADVOCATES SPEAKING OUT AND WE HAVE PARENTS. FACT IS OLDER PEOPLE ARE MAJORITY OF THE POPULATION. WE HAVE TO KEEP THAT FOCUS SO WHEN A GUY LIKE YOU WANTS TO DO THAT STUDY IN MY OPINION NIH SHOULD BE FOCUSING MORE ON WHAT IS THE AGE GROUP YOU SERVE AND HOW YOU'RE GOING TO DO IT. THE FINAL THING THAT I WOULD LKE TO SAY, AND I KNOW IT SOUNDS LIKE I'M COMING DOWN ON YOU ABOUT THIS BUT I DON'T MEAN THIS AS A CRITICISM OF YOU, I THINK YOU PRESENTED US A GOOD PIECE OF WORK. >> HAPPY TO HEAR YOU FRANK. >> I SEE OFFER HERE THAT WE HAVE -- OVER HERE WE HAVE AFRICAN AMERICAN FOLKSES WHO ARE HERE INTERESTED IN ISSUES THAT AFFECT AUTISTIC PEOPLE OF MUCH MORE MODEST MEANS IN CITIES IN NEW JERSEY. ALLOCATE THE QUESTIONS YOU FRAME THERE -- I LOOK AT THE QUESTIONS YOU FRAME THERE AND ASK MYSELF IF I WAS SUCH A PERSON HOW MEANINGFUL WOULD THAT BE TO ME OR HAVE I HEARD THE RESULTS OF ANOTHER STUDY BASED ON BUNCH OF REASONABLY AFFLUENT WHITE COLLEGE STUDENTS. I THAT'S WHY. I WOULD SAY NO, THAT'S NOT TRUE WE HAD A BROAD DEMOGRAPHIC BUT I WOULD SAY THAT'S A KEY SLIDE YOU SHOULD PRESENT. MORE MEANINGFUL THAN THE 500,000 PEOPLE SLIDE. HOW ARE WE GOING TO SPEAK TO THE ISSUES OF THESE FOLKS HERE AND THE FOLKS WHO REPRESENT MANY OTHER DIVERSE AUTISM COMMUNITIES IN YOU ARE O COUNTRY. I WOULD SAY YOU SHOW A PROMISING RESULT AND I COMMEND YOU FOR THAT AND I VOTE TO SUPPORT YOU IN CONTINUING THE RESEARCH BUT AT THE SAME TIME I WANT TO FOCUS ON THE GREATER GOAL, SERVING ADULTS AND YOU'RE THE GROUP YOU PRESENTED WAS ONLY ONE SMALL SEGMENT. AND LET'S THROW AWAY THIS 500,000 THING. THAT HAS NO PLACE IN THESE THINGS IN THE FUTURE IN MY OPINION. >> I GENUINELY PRESENT YOUR FRANK COMMENTS AND I'M NOT GOING TO MAKE THIS BETTER UNLESS I GET PEOPLE WHO ARE -- WHO SPEAK UP AND ARE CRITICAL. I WOULD SAY I APOLOGIZE IF I MADE IT SEEM AS IF I WAS DISCOUNTING OLDER ADULTS. IN MY CLINICAL PRACTICE UNIVERSITY OF PENNSYLVANIA I SEE QUITE NUMBER OF MIDDLE AGE TO OLDER ADULTS ON THE AUTISM SPECTRUM AND I AM INTERESTED IN WELFARE AN WAYS TO HELP THAT SEGMENT OF THE POPULATION. THE ELIGIBILITY WAS 18 AND UP. 18-99. WE FOUND FORTUNATELY OR UNFORTUNATELY, THE GROUP THAT CAME TO US FROM THE EARLY TO MID 20s TO MID 40s, OLD EST WAS MID 40s, WE DIDN'T GET ANYONE ABOVE -- THE ELIGIBILITY WAS CERTAINLY OPEN FOR THEM. AND BASICALLY I THINK WE WERE FINDING THIS IS ONE OF THE CHALLENGES THAT WE MAY NEED TO THINK CAREFULLY ABOUT IN THE FUTURE STUDY IS THAT OFTEN TIMES TO BE PERFECTLY FRANK IT WAS PARENTS BRINGING THEIR YOUNG ADULT TO US. AND FOR WHATEVER REASON MAYBE NOT GETTING OUR MESSAGE OUT WELL ENOUGH. THE OLDER ADULTS WHOSE PARENTS MIGHT NOT BE AROUND AND STILL ADVOCATING FOR THEM WERE NOT BRINGING THEY WEREN'T SEEKING US OUT. EVEN THOUGH WE TRIED TO CONTACT LOCAL ORGANIZATIONS. THAT WAS AN ISSUE AND WE NEED TO THINK MORE ABOUT THAT. U CERTAINLY APPRECIATE WHAT YOU SAID ABOUT 500,000, $600,000 AND I THINK WE NEED TO THINK ABOUT HOW TO PRESENT THAT. WHO ARE THERE ENTITLED SERVICES. IT'S AN IMPORTANT QUESTION THOUSAND ACCESS THAT. TO THINK ABOUT IT MORE DIVERSE COMMUNITY MEN TA HEALTH CENTERS AND SO ON, WE'LL THINK ABOUT THAT AS WELL SO APPRECIATE YOUR COMMENTS. I DON'T KNOW IF WE'RE OUT OF TIME. >> THERE WERE THREE HANDS UP AND I SHOULD AHUE THE THEE SO WE'LL START WITH DR. DAWSON. I'M AFRAID THAT'S IT BUT THERE WILL BE I'M SURE YOU CAN CONVERSE OVER LUNCH FURTHER. >> THANK YOU FOR THAT PRESENTATION, I LIKE THE WAY YOUR APPROACH IS COMPREHENSIVE AND YOU DON'T SEE THAT OFTEN. SO I THINK THAT MAKES A LOT OF SENSE. WHAT I WANT TO ASK YOU ABOUT IS AS WE DEVELOP INTERVENTIONS FOR ADULTS WITH AUTISM, HOW DID YOU THINK ABOUT MEASUREMENT OUTCOME IN A STUDY LIKE THIS IN TERMS OF BOTH REFLECTING THE PERSONAL EXPERIENCE OF THE PERSON THAT'S PARTICIPATING AS WELL AS PERHAPS HAVING AN OUTSIDE VIEWER THAT IS ASSESSING HOW WELL THIS PERSON IS DOING? I THINK THAT'S A -- WHETHER A PHARMACOLOGICAL STUDY OR OTHERS, I THINK PEOPLE ARE STRUGGLING WITH HOW YOU DO THAT, WHETHER PEOPLE ARE ABLE TO REPORT ON YOUR OWN SYMPTOMS RELIABLY OR YES, THEY ARE, AND HOW DO YOU DO THAT. ARE THERE GOOD MEASURES SO STRUGGLED WITH THAT. >> GREAT QUESTION. IT'S A REALLY IMPORTANT ISSUE FOR HOW DO WE MONITOR TREATMENT RESPONSE. I THINK BASICALLY WHAT WE TRIED TO DO, TO ANSWER YOUR QUESTION, WE USED A COMBINATION OF SELF-REPORT MEASURES, INFORMANT REPORT MEASURES AND PERFORMANCE BASED MEASURES. SO SOME OF THE MEASURES WERE SELF-REPORT QUESTIONNAIRES, IN WHICH PARTICIPANTS COULD SAY HOW HAY FELT THEY WERE DOING HOW THEY WERE FEELING INCLUDING SCALE OF PSYCHOLOGICAL WELL BEING, THEN SRS AND OTHERS. THEN THERE WAS PERFORMANCE -- YOU -- ONE MIGHT ARGUE OBJECTIVE PERFORMANCE BASED MEASURES LIKE WE USE BATTERY OF SOCIAL COGNITION BY THE UNIVERSITY OF PENNSYLVANIA THAT'S A SORT OF TIME TEST OF EMOTION IDENTIFICATION ON FACES AND SO ON. AND VIDEO MODELING WAS A PERFORMANCE BASED MEASURE BECAUSE THEY WERE -- THEIR PERFORMANCE ON THOSE SKILLS WAS ASSESSED BY SOMEONE. SO THAT IS HOW WE APPROACH THAT BUT I FEEL LIKE YOU'RE GETTING AN IMPORTANT QUESTION I DON'T FEEL LIKE OUR ASSESSMENT BATTERY WAS PERFECT AND I FEEL LIKE THERE'S A LOT OF NEED FOR BETTER MORE RELIABLE ASSESSMENT MEASURES AND QUANTITATIVE ASSESSMENTS TO SEE CHANGE WITH TREATMENT. YOU WILL HEAR INTERESTING THINGS FROM BOB SCHULTZ LATER TODAY, I HAD THE PRIVILEGE WORK WITH HIM ON, THAT MIGHT BE A PROMISING -- >> I WANT TO MOVE THING ALONG. >> I'M TOO LONG WINDED. >> PLEASE KEEP QUESTIONS AN ANSWERS AS SHORT AS YOU CAN. >> I ALSO WANTED TO SAY -- HAVE A LITTLE BIT OF A COMMENT ON THE ASSESSMENT CHOICES. I THINK IT'S GOING TO BE REALLY INTERESTING AS YOU TRACK WHAT I WOULD CALL THE ACTUAL OUTCOME ASSESSMENTS. FOR PEOPLE LIKELY -- SOCIAL CONTACTS AND INTEGRATION INTO THE WORK FORCE. THE REASON IS THAT I AM PRETTY -- REALLY AS AUTISTIC INDIVIDUAL I'M INCREDIBLY NOT CONVINCED THAT ABILITY TO RECOGNIZE EMOTION IS MEASURED BY ASSESSMENT. HAS ANY LIKELIHOOD OF PREDICTING JOB SUCCESS UNLESS YOU'RE A THERAPIST OR MAYBE AN ACTOR, SOMETHING ELSE LIKE REALLY -- BECAUSE MOST OF THE TIME IF I WANT A JOB, DOING FIRST SPEAKER I CAN'T REMEMBER HIS SON'S FAILURE ROD, DOING WHAT HE'S DOING WHICH IS SORTING BOOKS SON'S NAMED JARROD. HE NEEDS TO ABILITY TO FOLLOW INSTRUCTION, THE ABILITY TO FOLLOW SPECIFIC WORKPLACE NORMS AND ABILITY TO SAY I'M DOING -- ESSENTIALLY HAVE FRIENDLY INTERACTIONS WITH PEOPLE. BUT NOT NECESSARILY DEEP EMOTIONAL INTERACTIONS WITH PEOPLE. AND WHEN -- AS I ALSO HAVE A WORKPLACE THAT'S AUTISTIC. AND WHEN WE INTEGRATE A NEW PERSON INTO THE WORKPLACE WHO HASN'T BEEN IN THE WORKPLACE BEFORE, ONE MAIN CHALLENGE IS TAKING WHAT PEOPLE SOCIAL SKILLS TRAINING ALREADY WAS AND SAYING NO, OKAY, THAT TRAINING IS HOW YOU MAKE FRIENDS, THAT'S NOT WHAT YOU'RE DOING HERE. I THINK MAYBE NEUROTYPICAL PEOPLE DON'T REALIZE HOW COMPLETELY DIFFERENT THESE SKILL SETS ARE. >> THOSE ARE GREAT POINTS. DR. GORDON WANTS ME TO KEEP MY ANSWER BRIEF. I WOULD JUST SAY NOT EVERY JOB INCLUDES SOCIAL SKILL, CERTAINLY NOT FRIENDSHIP TYPES OF SOCIAL SKILLS BUT CERTAIN SITUATIONS LIKE WHEN YOUR BOSS GIVES YOU CERTAIN FEEDBACK, LET CEASE SAY, THAT YOU HAVE TO NAVIGATE SOME SOCIAL INTERACTION OR THERE'S STRESS, MANAGING E REGULATION AN STRESS CAN BE IMPORTANT ISSUES. >> TO CLARIFY, NOT SAYING IT'S NOT A SOCIAL SKILL, I'M SAYING THE MEASUREMENT OF PEOPLE'S ABILITY TO RECOGNIZE EMOTIONS ISN'T PREDICTIVE OF YOUR SKILL. >> GOOD POINT. I AGREE. >> DR. WEXLER. >> >> THANK YOU, EEL TRY TO -- I'LL TRY TO BE BRIEF. AND NOT FRANK. HOW IS THAT. I WORK FOR THE GOVERNMENT. I WAS WONDERING METHOD LOGICALLY, AS FROM YOU DESCRIBE, YOU USE UNDERGRADUATES TO DO REHEARSAL ACTIVITIES, ROLE PLAYING KINDS OF THINGS. WONDERING IF YOU CONSIDER AS YOU SCALE UP AND APPLY FOR BIGGER BUCKS AND LARGER SAMPLES, THE USE OF LIFE SIZE AVATARS. WE'RE DOING A LOT OF WORK WITH LIFE SIZE AVATARS. AND WE'RE FINDING TEN MINUTES IN FRONT OF THE SCREEN IS EQUAL TO HOURS OF ACTUAL PRACTICE YOU CAN DO REPEATED PRACTICE, YOU CAN DO CONSISTENT PRACTICE. AND THE AVATARS AREN'T SUBJECT TO HUMAN SUBJECT REVIEW. WHICH FRANKLY CAN BE A FREEING EXPERIENCE SO YOU CAN EXPOSE PEOPLE TO BEHAVIORS THAT MIGHT NOT -- THAT COULD BE QUESTIONED IF THERE WERE LIVE ACTION. >> GREAT IDEA. AND I HAVE BEEN WORKING WITH SOME PEOPLE AT CENTER FOR AUTISM RESEARCH AT CHOP ON SOME OF THAT WORK. IN RELATED PROJECTS SO IT'S A GREAT IDEA. >> THANK YOU, VERY MUCH, TED. I APPRECIATE THE -- [APPLAUSE] >> APPRECIATE THE ENTHUSIASM ON THE PART OF THE COMMITTEE AND THAT'S WHY WE ALLOWED THINGS TO GO OVER BUT IT MEANS WITH EAR PRESSED FOR TIME SO I TRUST SUSAN WILL FIND A WAY THE MAKE UP SO WE DON'T GO INTO THE LUNCH TOO MUCH. SOON SAN DANIELS IS GOING TO LEAD US IN THE DISCUSSION OF COMMITTEE BUSINESS. DR. DANIELS. >> THANK YOU. SO I KNOW WE HAVE A LOT OF IMPORTANT THINGS TO DISCUSS. AND IF WE HAPPEN TO RUN A LITTLE BIT OVER WE CAN BRING BACK LUNCH AND EAT HERE IF PRESSED BUT TRY TO GET YOU THROUGH IT ON TIME. I WANT TO TAKE A MOMENT BEFORE I GET INTO THE PRESENTATION TO ACKNOWLEDGE THE INCREDIBLE TEAM I HAVE IN THE OARC THAT MADE THIS MEETING AND LAST NIGHT'S EVENT AND ALL THE MATERIALS THAT YOU SEE REGULARLY FOR IACC DELIBERATIONS, ALL THIS IS MADE POSSIBLE BY THIS TEAM THAT PUTS UP OUR WEBSITE, HANDLES LOGISTICS FOR ALL OF THIS, DOES THE ANALYSIS THAT YOU SEE IN SOME OF THE REPORTS THAT I'M GOING TO TALK ABOUT. I WANT TO ACKNOWLEDGE ALL, SO WE HAVE FOUR PANELISTS TONY SELESTIN JULIANA RAVA, WE HAVE REREBECCA MARTIN AND JEFF (INDISCERNIBLE) ANGELIQUE METROPOLIS WHO APPLES LO JUSTICES AND -- WHO HANDLES LOGISTICS AND MANAGEMENT. I WANT TO THANK THEM FOR MAKING ALL THIS POSSIBLE. MOVING RIGHT AHEAD, JUST TO REITERATE, THIS IS AUTISM AWARENESS MONTH AND THE OARC HAS BEEN ACTIVE AS WELL AS MANY PARTS OF OUR GOVERNMENT IN TRYING TO GET READY FOR THIS. JUST A RECAP ON LAST NIGHT WE HAD A FILM SCREENING OF AS ONE THE AUTISM PROJECT, A REALLY SPECIAL FILM MADE IN THE UNITED ARAB EMIRATES AT THE REQUEST OF THE ROYAL FAMILY. THE UNITED IRE RAN EMIRATES. THIS FILM IS AVAILABLE ON THE WEBSITE AND WHEN THE SLIDES GO UP YOU'LL BE ABLE TO GET TO A LINK THERE. BUT THERE'S A LINK AND YOU CAN SEE IT UNTIL AUGUST 22ND, 2017 DUE TO GENEROSITY OF IMAGINATION, THE COMPANY THAT PRODUCED THE FILM SO ENCOURAGE ANYONE TO SEE IT WHO HASN'T. WE HAVE ONE PERSON FEATURED IN THE FILM TODAY, SHERIFFA YATEEN BEHAVIORAL ANALYST FROM UAE IS A SPECIAL GUEST LISTENING IN ON OUR MEETING. SO JUST TO RECAP, AUTISM AWARENESS MONTH ACTIVITIES, WE HAVE SOME INFORMATION ON OUR WEBSITE ABOUT THE UN ACTIVITIES, CDC RECENT AUTISM AWARENESS MONTH EVENT, AND OTHER EVANS SPONSORED BY OTHER AGENT RECEIVES. AND THE -- AGENCIES. THE STATEMENT OF SECRETARY GENERAL, THE PROCLAMATION, A COUPLE OF BLOGS HERE, JOSH HAS ONE THAT WENT UP A COUPLE OF WEEKS AGO AND DR. NOVOTNY AND ROBERT HAIRWOOD HAS ANOTHER BLOG AN JOSH HAS ANOTHER BLOG COMING OUT AND SECRETARY OF HHS WILL HAVE ONE SO WE'LL PUT THOSE -- THESE ARE ALREADY ON OUR WEBSITE AN NEW ONES WILL BE ADDED SOON SO YOU CAN READ THEM THERE. SO NEXT I WOULD LIKE THE SHARE WITH YOU THE 2016 IACC SUMMARY OF ADVANCES. SO YOU HAVE IN FRONT OF YOU THE PRINT VERSION SO THIS IS THE RESULT OF THE COMMITTEE VETTING MANY DIFFERENT ADVANCES CONSIDERED OVER THE LAST YEAR. IT INCLUDES LAY FRIENDLY SUMMARIES OF 20 MOST SIGNIFICANT ADVANCES VOTED ON BY COMMITTEE IN BIOMEDICAL AND SERVICES RESEARCH. AND ALIGNS WITH THE STRATEGIC PLAN SEVEN QUESTIONS. SO I HOPE MANY HAVE A CHANCE TO LOOK OVER THE FINAL PRODUCT AND THOSE WHO ARE IN OUR AUDIENCE PICK UP A COPY AT TABLE OR PEOPLE ONLINE GET IT ONLINE OR HARD COPY WRITE THE OFFICE AND ASK FOR ONE. WE HAVE ANOTHER PUBLICATION. THIS IS THE FINAL PRODUCT OF THE 2013 IACC PORTFOLIO ANALYSIS. THE FINAL REPORT. THE COMMITTEE HAS SEEN THE DATA OVER THE PAST YEAR FOR THIS AND WE HAVE JUST BEEN WORKING ON PREPARING THIS FINAL PRESENTATION OF IT WITH A FULL NARRATIVE AND ALL THE FIGURES THIS IS ALSO PROVIDE HARD COPY FOR YOU AT THE TABLE AND WE HAVE COPIES OUT AT OUR BOOTH. AND IT'S ONLINE AS WELL, ENCOURAGE YOU THE LOOK THROUGH IT, OUR OFFICE IS TRYING TO GET THE 2014 AND 15 DATA ANALYZED SO WE HOPE LATER THIS YEAR WE WILL BE ABLE TO SHARE THAT WITH YOU. NEXT I WOULD LIKE TO INTRODUCE THE NEW AUTISM RESEARCH DATABASE WHICH IS A REFRESH OF OUR PREVIOUS ONLINE WEB TOOL CONTAINING DATA SINCE TAIL FOR AUTISM RESEARCH ACROSS FEDERAL AGENCIES AND PRIVATE ORGANIZATIONS WHO VOLUNTEERED TO SHARE THEIR DATA. AND IT HAS SOME NEW FEATURES NEW GRAPHICS AND INTERACTIVE FEATURES SO I WOULD ENCOURAGE YOU TO CHECK IT OUT AND I HAVE A BRIEF DEMO THAT WE'LL SHARE WITH YOU FROM SOMEONE IN MY OFFICE, POLICY ANALYST JULIANNA RAVA WHO IS GOING TO THE PODIUM NOW. >> HI, EVEN. -- EVERYONE. THIS IS OUR NEW AUTISM RESEARCH DATABASE REPLACING THE OLD WEB TOOL. WE HAVE A SAVVY NEW DESIGN. THIS IS THE LANDING PAGE YOU COME TO WHEN YOU CLICK ON THE LINK ON OUR WEBSITE. WE HAVE EXPAND FOR MORE, THAT GIVES YOU MORE DETAIL ABOUT IT. WHEN YOU FIRST COME TO THE PAGE THE NEXT THING IS IT'S STILL BY EACH FISCAL YEAR SO HERE IS A DROP DOWN, PICK A PARTICULAR YEAR, AND SEVEN TAGS WILL UPLOAD TO THAT DATA FOR THAT YEAR. THE SEVEN TABS KNOW OUR STRATEGIC PLAN. WE HAVE -- FOLLOW OUR STRATEGIC PLAN. WE HAVE THE STRATEGIC PLAN QESTIONS, FUNDER, WE ADDED FEDERAL VERSUS PRIVATE FUNDING MULTI-YEAR FUNDING TABLES OBJECTIVES, SUBCATEGORIES, AND NEW GEOGRAPHY. QUICKLY I'LL GO THROUGH THE SEARCH TOOL. PUT IN A WORD LIKE TRANSITION, THAT'S OFTEN COMES TO US PROJECTS ARE FUNDED FOR TRANSITION, WE GET 2013, 35 PROJECTS THAT ARE FOUND. WHEN YOU CLICK PROJECT TITLE YOU GET MORE INFORMATION ON THAT PROJECT. PRINCIPLE INVESTIGATOR, DESCRIPTION, SO ON, YOU GET STRATEGIC PLAN QUESTION. YOU CAN ALSO GET THE LINK FOR THAT PARTICULAR THIS ONE DOESN'T HAVE A GOOD ONE. BUT THEY HAVE THE EXTERNAL LINK AVAILABLE. HERE WE GO. SO YOU CAN EASILY PUT IN JUST AREA YOU'RE INTERESTED IN AND THAT WILL POP UP. YOU CAN ALSO DOWNLOAD, SAY YOU WANT DOWNLOAD SEARCH RESULTS FOR TRANSITION YOU CAN DOWNLOAD IT FROM XL OR PDF TO INCLUDE 35 PROJECTS. THEN WE GO THROUGH EACH OF THE TOPS. ON THE FIRST TAB IS STRATEGIC PLAN QUESTIONS, BROKEN DOWN BY NUMBER OF PROJECTS. TOTAL FUNDING AND PERCENTAGE OF TOTAL FUNDING. WE HAVE A COOL INTERACTIVE FIGURE INCLUDED. WHEN YOU CLICK ON QUESTION ONE NUMBER OF PROJECTS, YOU GET THE LIST BROKEN DOWN BY OBJECTIVE. CLICK PROJECT TITLE YOU GET THAT SAME INFORMATION YOU GOT WHEN YOU SEARCHED FOR PROJECTS. FUNDERS PAGE, YOU GET THE SAME WHERE YOU HAVE A FIGURE AT THE BOTTOM, THAT'S INTERACTIVE AS WELL. YOU HAVE NUMBER OF PROJECTS FOR EACH FUNDER. ANOTHER COOL THING IF YOU CLICK ON FUNDER, YOU GET 2008 THROUGH 2013 FUNDING. AND BROKEN DOWN BY ARA AND NONARA. MAKE SURE I'M NOT MISSING ANYTHING ON THIS PAGE. FEDERAL VERSUS PRIVATE. ON THE SAME FORMAT, YOU CAN LOOK AT ALL THE PRIVATE PROJECTS OR FEDERAL INSTITUTES CLICK ON THE PROJECT TITLE YOU GET THE FULL INFORMATION. >> JEWELS IF YOU CAN CLICK ON THE TAB SO YOU CAN SEE WHAT IT LOOK LIKE THAT WILL BE GOOD BECAUSE WE WANT TO MOVEN O TO THE NEXT PORTION OF THE MEETING. MULTI-YEAR FUNDING TABLES FALL IN THE SAME FORMAT. YOU CAN DO DROP DOWN, JUST PARTICULAR QUESTION. SEE TOTAL AT THE END FOR EACH -- QUESTION 3. OBJECTIVES. THIS FOLLOW IT IS SAME FORMAT. SUBCATEGORIES HAS A FIGURE FOLLOWING EACH QUESTION. GET PROJECT BROKEN DOWN. AND GEOGRAPHIES PRETTY COOL MATH, HOVER OVER YOU GET TOTAL FUNDING FOR THAT STATE. CLICK ON IT, BRINGS YOU DOWN WE ALSO HAVE A INTERNATIONAL MAP FOLLOWING THE SAME FORMAT AS THE OVERALL MAP. SO PRETTY COOL, CHECK IT OUT. >> THANK YOU VERY MUCH. SO WE HOPE Y'ALL WILL FIND THIS INTERESTING TO GO BACK AFTER THE MEETING AND CHECK IT OUT OR IF YOU'RE LOOKING FOR INFORMATION ON WHAT'S FUNDED AT LEAST THROUGH 2013 RIGHT NOW WE HAVE THE DATA IN THERE AND 14 AND 15 WILL BE ADDED AS SOON AS POSSIBLE. I ALSO WANTED TO SAY THAT THIS RESEARCH DATABASE IS MADE POSSIBLE ALMOST ENTIRELY IN HOUSE BY THE TEAM THAT WE HAVE SO TALENTED WEB DEVELOPER JEFF WEGAND AND POLICY ANALYST WHO PUT THE DATA TOGETHER AND JUST THE ENTIRE TEAM CAME TOGETHER. I DID HAVE ONE OUTSIDE CONTRACTOR HELP WITH DESIGN OVER PAST YEAR TEMPORARILY AND HE DID A TERRIFIC JOB TOO. THANKS. CINDY. >> I HAVE ONE THAT'S TERRIFIC. I UNDERSTAND THE GREAT JOB PEOPLE HAVE DONE AND TREMENDOUS AMOUNT OF WORK THAT WENT INTO IT. YOU'RE PLAYING CATCH UP WITH PAST YEARS BUT ARE YOU ANTICIPATING STEADY STATE FOR INSTANCE 2016 TODAY. IN A COUPLE OF YEARS WOULD BE AVAILABLE. >> WORKING TOWARD SO I HOPE THAT WITHIN THE CALENDAR YEAR WE WILL RELEASE THE 14 AND 15, THEN WEEING EEL BE ALMOST CAUGHT UP AND WE WILL DO OUR 16 DATA CALL SOON. SO IT ALSO DEPENDS ON JUST THE USUAL EVERYONE IN THE GOVERNMENT FACES STAFFING LEVELS AND IF YOU HAVE PEOPLE TO DO THE WORK, ALL OF THAT. BUT AS LONG AS WE DO, WE'RE GOING TO TRY TO CATCH UP TO BEING MORE CURRENT. AND OF COURSE WE ALWAYS SHARE THE DATA IN ADVANCE WITH THE COMMITTEE BEFORE IT GETS PUBLISHED FORMALLY. SO YOU ALWAYS START SEEING THE DATA MANY MONTHS IN ADVANCE. >> IS THERE -- WHAT'S THE PROCESS OR CRITERIA OF HAVING OTHER ORGANIZATIONS THAT AREN'T CURRENTLY REPRESENTED IN THE DATABASE ADD THEIR DATA? I'M THINKING -- FEELING MCDERMOT SYNDROME FOUNDATION OR SOME OF THESE OTHER FOUNDATIONS, THEY HAVE FUNDED DATA THAT'S RELEVANT. HOW DO THEY GET INTO THAT? >> PREVIOUSLY FEW YEARS AGO I DID ASK THE COMMITTEE AT THE TIME ABOUT WHETHER YOU WANTED US TO BE PUTTING IN FRAGILE X SOME OTHER SYNDROMES RELATED TO AUTISM. AT THE TIME THE COMMITTEE DIDN'T WANT ME TO MIX THAT DATA SET INTO THE AUTISM DATA SET. SO I HAVE NOT BEEN REQUESTING THAT INFORMATION IF THE COMMITTEE CHANGES ITS MIND AND DECIDES THEY WANT TO START INCLUDING SOME OTHER DISORDERS IN WITH THIS, BECAUSE YOU THINK IT WILL BE HELPFUL, THAT CAN BE A DISCUSSION FOR FUTURE DAY AND WE CAN SCHEDULE MORE TIME TO TALK ABOUT IT. >> LET'S PUT IT ON THE AGENDA FOR THE NEXT IACC MEETING. 'S WORTH REVISITING. >> SO LET'S MOVE AHEAD. TO DISCUSSION OF THE STRATEGIC PLAN. SO THIS IS JUST A SUMMARY OF THE STRATEGIC PLAN WHICH I KNOW YOU ALL ALREADY KNOW. SO LET'S TALK ABOUT WHAT WE HAVE BEEN DOING. SO WE HAD SEVEN WORKING GROUPS WORKING TO ADDRESS THE SEVEN CHAPTERS OF THE STRATEGIC PLAN, SEVEN QUESTION AREAS. DRAFTS ARE COMPLETED FOR ALL SEVEN CHAPTERS BY THE HARD WORK OF THESE WORKING GROUPS OVER THE LAST FEW MONTHS AND THEY INCLUDE A NUMBER OF DIFFERENT NEW AREAS MOST IMPORTANTLY NEW OBJECTIVES, MAYBE NOT MOST IMPORTANTLY, ALL THE OTHER INFORMATION IS ALSO VERY IMPORTANT. THESE DRAFTS ARE SHARED WITH THE COMMITTEE Y'ALL HAVE THEM IN YOUR PACKETS, THEY ARE ONLINE FOR THOSE WHO MIGHT BE VIEWING THIS MEETING ONLINE. AND WE WANT TO HAVE SOME TIME TO DISCUSS ANY MAJOR ISSUES THAT WE FEEL MIGHT NEED COMMITTEE DISCUSSION RELATED TO THESE DRAFTS. SO I WOULD LIKE TO TABLE ANYTHING THAT'S LIKE MINOR CHANGES THAT YOU JUST WANT AN EXAMPLE ADDED OR A REFERENCE OR MENTION OF SOMETHING THAT'S NOT CONTROVERSIAL BUT IF THERE ARE ISSUES WE THINK THE COMMITTEE NEEDS TO TALK ABOUT AND HASH OUT, I WOULD LIKE THAT INFORMATION TO BE SHARED RIGHT AT THIS MEETING AND NOT WAIT UNTIL LATER. CAN WE GO IN ORDER OF STRATEGIC PLAN OR DO WE WANT -- IF THAT'S OKAY TO START WITH QUESTION ONE? I PUT DOWN A COUPLE OF PIECES OF INFORMATION THAT CAME INTO ME FROM COMMITTEE MEMBERS. QUESTION ONE, I DIDN'T HAVE ANY MAJOR ISSUES COME TO MY ATTENTION. IS THERE ANYONE IN THE COMMITTEE THAT FEELS AN ISSUE WITH QUESTION ONE WE NEED TO TALK ABOUT? >> I WANT TO SAY, REALLY ISN'T QUESTION-SPECIFIC, MY VIEW -- WE HAVE THIS PROBLEM IN QUESTION TWO VERY MUCH, IN THE SENSE THERE'S TOO MANY COOKS IN THE BRAWN. SO MANY DOCUMENTS ARE WRITTEN AS IF THEY WERE REVIEW ARTICLES SO THEY WERE ACTUALLY HIGHLY REOPPORTUNITY CAN'T WITH MATERIAL THAT IS PRESENT IN OTHER SECTIONS. THEY HAVE ABBREVIATIONS WHICH I DON'T THINK ARE ACCESSIBLE TO THE PUBLIC AND THEY'RE DIFFERENT LINKS. MY VIEW IS THAT THE DIFFERENT SECTION CHAIR SHOULD BE INSTRUCTED TO REDUCE EVERYTHING TEN PAGES. >> LET ME BACK UP TO THE PROCESS. >> I WOULD JUST SAY THAT THE -- MANY OF THESE BASIC WAY BECAUSE THEY'RE TRYING TO BE COMPLETE, THEY INCORPORATE MATERIAL FOR EXAMPLE, WOULD BE MORE PROPERLY RESTRICTED TO QUESTION ONE. MAJOR PROBLEMS JUST THE WHOLE THING. >> SO LET ME BACK UP. I WAS TRYING TO SAVE TIME BY SKIPPING ALL OF THAT BECAUSE I EMAILED YOU ABOUT IT BUT WITH THESE CHAPTER, THIS IS THE FIRST DRAFT COME BACK FROM THE WORKING GROUPS. THE NEXT STEP IS I'M TAKING IACC FEEDBACK, ANYTHING REALLY IMPORTANT THAT YOU WANT TO CHANGE ABOUT THE WAY THE CONCEPTS AND CONTENT ARE IN THE -- IN THESE CHAPTERS IS WHAT I'M LOOKING FOR NOW. AFTER THIS MEETING OARC WILL BEGIN EDITS AND WE ALWAYS DO -- TAKE A HARD LINE WE DATES IN TERMS OF TRYING TO GET THINGS INTO A SIMILAR FORMAT. WE CORRECT ALL THE REFERENCES, WE TRY TO GET EVERYTHING UNIFORM SO THAT'S NOT THE JOB OF THE WORKING GROUP, THEY PUT ENOUGH TIME IN. SO WE WON'T WORRY ABOUT MINOR ISSUES. WE WANT TO TALK CONTENT. SO I DON'T KNOW IF THAT ANSWERS QUESTIONS. >> TO BE CLEAR THAT INCLUDES EDITING FOR REDUNDANCY AND MAKING THE CHAPTERS OF UNIFORM LENGTH AND THE OTHER ISSUES THAT YOU RAISED HERE. >> YES, ALL THOSE IN STYLE. SO MAYBE SOME THAT ARE TOO TECHNICAL WILL MAKE THEM MORE LAY FRIENDLY. THE PURPOSE WE WANT THIS DOCUMENT TO BE ACCESSIBLE TO INDIVIDUAL ON THE SPECTRUM OR FAMILY MEMBER SO WE WILL TRY TO GET RID OF ANYTHING THAT'S OVERLY TECHNICAL AND WE'LL KEEP REFERENCES THERE FOR THOSE WHO WANT TO READ PAPERS. SAMANTHA. >> THIS IS POSSIBLY SOMETHING TO PUT A NOTE ON BUT THERE'S A LOT OF DISCUSSION ABOUT DEVELOPING BETTER SCREENING MATERIALS. I KNOW ADULT LIFE SPAN TOPIC YOU TALK ABOUT LEARNING TO RECOGNIZE SIGNS OF AUTISM BETTER SOMEONE READING THIS MIGHT START AT QUESTION ONE AND THINK THAT THAT'S NOT BEING ADDRESSED ANYWHERE. >> THAT'S WHAT I HAD IN MIND. I DIDN'T PUT IT ON THE SLIDE HERE. THERE IS SOME MATERIAL ABOUT ADULT DIAGNOSIS AND SCREENING IN QUESTION 6. THE PART MISSING THERE IS WE DON'T HAVE SCIENTIFIC RESEARCH INFORMATION IN QUESTION 6 RIGHT NOW SO THIS WAS SOMETHING WE WERE AFTERWARD GOING TO GO BACK WITH WORKING GROUP MEMBERS TO U GET THAT INFORMATION, WE'RE PLANNING TO PUT IT IN CHAPTER 6 BUT WE COULD PUT A REFERENCE TO IT IN CHAPTER ONE. DEPENDING, BUT WE WANT TO MAKE SURE THAT'S COVERED UNLESS THERE'S OBJECTION. >> I THINK THAT THOSE THINGS SHOULD BE CATEGORIZED UNDER QUESTION 6 BECAUSE IT MAKES EASIER TO UNDERSTAND HOW MUCH IS FOCUSED ON ADULTS SO I WOULD WANT KNOW IN THE QUESTION. >> I THINK W CAN DO THAT. JOHN. >> I THINK WE TALKED ABOUT INCLUDING SOME WORDS TO ADDRESS YOU JUST SAID AND ALSO WORDS TO TALK ABOUT THE OVERLAP BETWEEN TWO AND THREE AND PREVENTION OF ASD AND DISABLING ASPECTS AND REASONABLENESS OF DESIRING TO CURE EPILEPSY EVEN AS WE MIGHT SAY AUTISM ITSELF IS NOT PROBABLY SUBJECT TO CURE ITSELF. WE TALKED ABOUT THOSE THINGS ALL BEING A COMPONENT OF THE INTRODUCTION. THOUGH WE TALKED ABOUT IT, IT 'NOT MENTIONED HERE. SO WE STILL THINKING THAT SAME WAY? I KNOW, JOHN, YOU PROVIDED SOME BEGINNING INFORMATION FOR INTRODUCTION BUT MIDDLE CONTENT NEEDS TO BE COMPLETED BEFORE WORKING ON INTRODUCTION AND CONCLUSION SO WE PUT THAT ASIDE UNTIL WE GET MIDDLE PART EDIT AND DR. GORDON WANTS TO TAKE A ROLE LOOKING AGENT THE INFORMATION YOU PROVIDED AND OARC WILL HELP OUT TOO, IF WE NEED HELP FROM OTHER COMMITTEE MEMBERS WE'LL GET IN TOUCH. SO THAT'S A LATER STEP BUT WE WON'T WANT TO REPEAT EVERYTHIG IN MIDDLE OF INTRODUCTION BUT TOUCH HIGHLIGHTS. SO IN TERMS OF OVERLAP BETWEEN QUESTION 2 AND 3, I HEARD CONCERNS ABOUT THAT. ANYTHING IN PARTICULAR YOU WANT US TO PAY ATTENTION TO WHILE EDITING, MEGHAN? >> SURE. THIS RELATES KIND OF TO QUESTIONS ONE, TWO, THREE. SO WE KIND OF STRUGGLED WITH QUESTION 2 WITH THE BIOMARKERS. AS PREDICTIONS FOR ASD. SO LOOKING BACK AT QUESTION ONE, P SPECIFICALLY WITH IMPLEMENTATION OF ASD DIAGNOSTIC AND SCREENING TOOLS WE CAN SEE A LITTLE BIT OF OVERLAP THERE. I ALSO NOTICED IN QUESTION FOUR, THEY TALK ABOUT BIOMARKERS AS PREDICTIVE RESPONSE TO TREATMENT. OUR GROUP HAD DISCUSSION WHETHER OR NOT BIOMARKERS FIT BETTER IN THE CONTEXT OF QUESTION ONE. SPECIFICALLY DIAGNOSTIC SCREENING TOOLS AND WHETHER OR NOT WE SHOULD COMPLETELY REMOVE IT FROM QUESTION TO CHAPTER ITSELF. >> USUALLY IN THE PAST WITH QUESTION ONE, WE FOCUSED ON BIOMARKERS WHEN GETTING CLOSER TO BEING MADE INTO AN ACTUAL SCREENING TOOL OR DIAGNOSTIC TOO MANY AND IF IT'S BASIC RESEARCH JUST TRYING TO DISCOVER BIOMARKERS IT ENDED UP IN QUESTION TWO. SO WE CAN TAKE NOTE OF THAT AND TAKE A CAREFUL LOOK AND MAKE SURE THE INFORMATION IS DISTRIBUTED PROPERLY BUT NOT REDUNDANT. THERE ARE DIFFERENT ASPECTS AND YOU WOULDN'T STOP. ANYTHING ELSE THAT IS PRESSING IN TERMS OF QUESTION TWO OR THREE. THIS IS AN ISSUE NEXT QUESTION TWO AND THREE, WE HAD QUESTIONS WITH THE WORKING GROUP AND DAVID AND CINDY ARE HERE IN OUR EXTENSIVE DISCUSSIONS WITH THE WORKING GROUP, TALKING HOW TO PRESENT, RISK AND WHAT WE'RE TRYING TO PREVENT AND TALKING ABOUT THE SHIFT THAT'S GONE ON IN THE COMMUNITY WITH WHETHER WE ARE TALKING ASD ITSELF OR PREVENTING DISABLING ASPECTS OF ASD AND DAVID AND CINDY MIGHT COMMENT ON THAT. WE WANT TO ENSURE THE DIRECTION THIS IS REFLECTING THE VIEW OF THE COMMITTEE. >> SO I THINK ACTUALLY GOES TO JOHN'S COMMENT THAT IT IS EXPLICITLY WRITTEN THE GOAL IS TO TRY AND PREDICT DISABILITY AND ELIMINATE DISABILITY RATHER THAN ELIMINATE AUTISM. IT WOULD BE WORTHWHILE READING THE INTRODUCTION TO THIS SECTION TO SEE WHETHER PEOPLE AGREE WITH IT BECAUSE IT HAS TAKEN PRETTY SUBSTANTIAL TURN FROM THE WAY THE LAST STRATEGIC UPDATE WAS WRITTEN. AND I THINK THAT DISCUSSIONS THE SENSE WAS WE ARE NOT AT STATE OF SCIENCE TO UNDERSTAND A PHENOTYPE SO DEBILITATING YOU WANT TO ELIMINATE THAT PHENOTYPE LIKE YOU MIGHT WANT TO ELIMINATE CANCER OR SOMETHING ELSE IS CLEARLY A PROBLEM. SO IT IS A CHANGE BUT IT'S SOMETHING THAT AT LEAST MAJORITY OF THE WORKING GROUP WAS COMFORTABLE WITH. I KNOW THERE WAS FEEDBACK FROM THE ENVIRONMENTAL SIDE OF THIS CHAPTER SO MAYBE YOU CAN DEAL WITH THAT. >> IN GENERAL THERE WAS A LOT OF AGREEMENT AND AWARENESS THIS IS AN IMPORTANT ISSUE IN THE FIELD NOW. QUESTIONS AROSE WHEN WE TRIED TO THINK ABOUT HOW DO WE BREATHE NEW PERSPECTIVE INTO RESEARCH LOOKING AT IDENTIFYING ENVIRONMENTAL RISKS FOR THE DISORDER. AND WHAT -- TO DO THAT THERE IS A PARAGRAPH I WOULD HOPE EVERYONE WILL LOOK AT, A SINGLE PARAGRAPH UNDER THE PIECE IN ASD THAT'S WHAT GENERATED A LOT OF THE COMMENTS. IN BRIEF WHAT THAT PARAGRAPH TRIES TO DO IS SAY OKAY WITH THIS SHIFT IN -- TOWARD PREVENTING THE DISABLING FEATURES OF AUTISM, IF YOU'RE APPROXIMATE EPIDEMIOLOGIST IT WILL BE REALLY IMPORTANT THAT YOU DON'T -- THAT YOU COLLECT DEEPER INFORMATION. YOU'RE NOT JUST LOOKING AT AUTISM CASES AND CONTROLS FOR INSTANCE BUT DISSECTING THAT PHENOTYPE. SO THAT THEN WHEN YOU GO ON TO DO ANALYSES, YOU ARE NOT LOOKING AT RISK FOR ASD AS A SINGLE ENTITY. YOU'RE PERHAPS ABLE TO TEASE OUT THAT THIS ENVIRONMENTAL EXPOSURE , IS LINKED TO THIS COMORBIDITY OR FEATURE OF ASD. THAT WAS THE IDEA PRESENTED IN THAT PARAGRAPH. THERE WAS DISCUSSION AROUND THIS GENERAL IDEA OF DOING AWAY WITH WORD PREVENTION. GENERAL PUBLIC HEALTH CONTEXT WITH ENVIRONMENTAL RISKS TO SOME OF THE MEMBERS, SEEMS SORT OF AWKWARD. MANY EXPOSURES WE'RE LOOKING AT, LEAD EXPO HOUR IS AN EXAMPLE THAT ISN'T GOING TO HAVE AN IMPACT JUST SPECIFICALLY ON AUTISM, IT AFFECTS OTHER AS PECKS OF DEVELOPMENT, CHILDREN AND ADULTS. >> CAN I INTERRUPT? I THINK YOU MADE A VERY, VERY IMPORTANT POINT, YOU MADE IT WELL. I LIKE TO HEAR FROM MEMBERS OF THE COMMITTEE NOT ON THIS GROUP. I WANT THEM TO ADDRESS THE FOLLOWING QUESTION. IMAGINE WE HAD A RISK FACTOR THAT WE KNEW PRE-DISPOSED TO AUTISM EASY TO GET RID OF AND THE RESULT OF THAT REDUCING THAT RISK FACTOR REDUCING INCIDENCE OF AUTISM AT LARGE. REDUCING INDENSE OF SPECTRUM. IS THAT SOMETHING THAT WE WANT TO PURSUE? IF IT IS SOMETHING WE WANT TO PURSUE, I THINK IT'S ILL ADVISED TO GET RID OF ENTIRELY FROM THE DOCUMENT THE IDEA OF PREVENTION OF ASD. I'M NOT -- TRYING NOT TO GUIDE THE COMMITTEE BUT I WOULD LIKE PEOPLE TO TRY TO ADDRESS QUESTIONS SPECIFICALLY BECAUSE IT GETS TO THE HEART OF THE ISSUE. I KNOW IT'S CONTROVERSIAL, BUT IT'S IMPORTANT TO SPEAK. >> SPEAKING FRANKEDLY, VERY IMPORTANT POINT. IF WE ARE SO CAREFUL WE ELIMINATE A WHOLE AREA OF INVESTIGATION, YOUR QUESTION SUGGESTS THAT WOULD I THINK BE QUITE A MISTAKE. IN DEFERENCE TO POLITICAL CORRECTNESS. AND I THINK WE ARE GOING TOO FAR HERE. >> ALLISON. >> I AGREE. A LOT OF THIS IS ABOUT RHETORIC. WHEN WE TALK ABOUT PREVENTION,S I THINK MANY OF US HAVE ALWAYS MEANT PREVENTION OF DEBILITATING SYMPTOMS. I CERTAINLY WOULD NOT WANT TO PREVENT MY DAUGHTER'S EXISTENCE BUT I ABSOLUTELY WOULD LIKE TO PREVENT THE EXTREMELY CHALLENGING AND DEBILITATING SYMPTOMS SHE HAS THAT PREVENTER FROM FULLRY ACCESSING THE COMMUNITY AND TAKING ADVANTAGE OF EVERYTHING THAT THE WORLD HAS TO OFFER TO HER. MY CONCERN ABOUT THIS ISSUE, THERE WAS RHETORIC IN THE CHAPTER THAT WENT TOO FAR IN TALKING ABOUT PREVENTION OF SYMPTOMS. SO FOR EXAMPLE, ONE SENTENCE IN CHAPTER 3 THAT SAYS IT IS FULLY APPRECIATED THAT AUTISM HAS POSITIVE BENEFICIAL FEATURES. I DON'T KNOW THAT THAT IS A UNIVERSAL BELIEF AMONG FAMILIES AND INDIVIDUALS STRUGGLING WITH SELF-INJURIOUS BEHAVIORS AND INABILITY TO COMMUNICATE. MY DAUGHTER IS WARM AND LOVING BUT I CAN'T IMAGINE THAT GIVEN THE CHOICE SHE WOULD NOT WANT TO BE RELIEVED OF MANY OF THE SYMPTOMS THAT SHE STRUGGLES WITH, WITH EVERY DAY. >> SO I WANTED TO ALSO POINT OUT THAT THE SAME ISSUE COMES UP IN THE TREATMENT CHAPTER SO WE MIGHT THINK ABOUT THEM AS SORT OF STRUGGLE AROUND THESE ISSUES AS THAT I A APPLY TO BOTH BECAUSE THERE'S A LOT OF FOCUS RIGHT NOW FOR EXAMPLE ON BIOLOGICAL AND OTHER TREATMENTS OF POOR SYMPTOMS OF AUTISM. SO IT DOES BEG THE SAME KIND OF QUESTION. ABOUT WHY WOULD YOU WANT TO ELIMINATE THE CORE SYMPTOMS OF AUTISM. IF YOU DON'T WANT TO ELIMINATE AUTISM. SO I THINK WE NEED TO INCORPORATE WHATEVER LANGUAGE WE DECIDE ON, WE NEED TO HAVE IT CONSISTENT ON BOTH OF THOSE CHAPTER. ONE WAY OF RESOLVING THIS IS TO ACTUALLY REFLECT BOTH POINTS OF VIEW. IN OTHER WORDS, BECAUSE THERE ARE INDIVIDUALS THAT -- PEOPLE WITH AUTISM AS WELL AS PARENTS AND PEOPLE DIRECTLY AFFECTED WHICH I THINK ARE IN THE BEST POSITION TO MAKE THESE ETHICAL DECISIONS RATHER THIS THAN SAY SOMEONE LIKE MYSELF, BECAUSE THERE ARE FOLKS THAT WOULD TAKE THIS STANCE THAT THEY WOULD WANT TO ELIMINATE AN ENVIRONMENTAL FACTOR THAT INCREASE -- THAT IS RELATED TO THE INCIDENCE OF AUTISM. THAT WE CONTINUE TO WANT TO FUND THAT RESEARCH. RECOGNIZING THERE ARE ALSO OTHER PEOPLE WHO MAY HAVE A DIFFERENT PERSPECTIVE ON THAT. AND LET THAT BE REFLECTED REFLECT IN THE PLAN. >> I APPRECIATE THE COURAGE EVERYONE SPOKEN UP WITH A COUNTER VAILING POINT OF VIEW. I WANT TO URGE ANY FURTHER COMMENTS TO BE NEW IDEAS THAT NEED TO BE IN THE CONVERSATION IN THE INTEREST OF TIME SOSA MAN THAT THAN LEWIS. >> I WANT TO GIVE PERSPECTIVE OF ONE OF THE GROUPS MOST CONCERNED ABOUT PREVENTION AND PREVENTION OF DISABILITY. ONE IS, I'M NOT EVEN SURE PREVENTION OF DISSENT IS THE BEST DISABILITY IS THE BEST PHRASE THE USE, MOST OF AUTISTIC SELF-ADVOCATES BELIEVE AUTISM IS A DISABILITY. SO IT'S THE SAME THING, PREVENTING AUTISM AND PREVENTING DISABILITY AUTISM ARE GOING TO BE THE SAME QUESTION. BECAUSE WE ALL HAVE A DISABILITY. FROM ON THE OTHER HAND NONE OF US WANT LEAD POISONING. IF IT'S LIKE A STUDY ON DOES LEAD POISONING INTERACT WITH AUTISM AND CAUSE LIFE LONG PROBLEMS. WE'RE ALL FINE WITH SAYING MAYBE WE SHOULD NOT POISON AUTISTIC PEOPLE AND IN WAY THAT CAUSES ADDITIONAL ISSUES. I THINK THAT INTERACTIVE FOCUSING ON THE INTERACTION, BETWEEN CERTAIN KINDS OF ENVIRONMENTAL TRIGGERS AND OUR BRAINS RATHER THAN SAYING THIS ENVIRONMENTAL FACTOR CAUSES AUTISM, THIS ENVIRONMENTAL FACTOR CAN EXACERBATE ISSUES WITH PEOPLE WHOSE BRAINS ARE ALREADY PREDISPOSED TO ASD. AND THEY MIGHT REDUCE OUR ABILITY TO LIVE INDEPENDENTLY OR DO SOMETHING ALONG THOSE LINES. I CAN'T SPEAK FOR ABSOLUTELY EVERYONE IN THE AUTISTIC COMMUNITY BUT THAT'S THE FRAMING THAT YOU MIGHT WANT TO USE. >> LEWIS. >> I WANT TO SPEAK VERY BRIEFLY, MAYBE THE DETAIL SHOULD BE OFFLINE BUT I THOUGHT THE SEXUAL SUSCEPTIBILITY DIFFERENCE SECTION MISSED MAJOR CONCEPTS IN THE LITERATURE FOR WHAT'S KNOWN ABOUT EVOLUTION AN FUNCTION OF X AND Y CHROMOSOMES THAT NEEDS TO BE ADDRESSED. >> THAT YOU COULD SEND TO US AND WE CAN TRY TO INCORPORATE. >> SO IF I MIGHT SUM UP WHAT I'M HEARING ABOUT PREVENTION IS THAT THERE IS SOME CONCERN THAT THE LANGUAGE IN THE CURRENT DRAFT MIGHT GO TOO FAR. THERE IS ALSO I I THINK GERALDINE SAID IT WELL, WE NEED TO EXPLICITLY STATE THE ISSUE OF PREVENTION -- IF WE WANT TO USE WORD CONTROVERSY BUT THERE IS CONTROVERSY AROUND IT, THERE ARE DIFFERENT IDEAS AND IN MY PRACTICE WITH PATIENTS I DIDN'T SEE AUTISM PATIENTS BUT LOTS OF PATIENTS WITH RELATIVELY DISABLING DISORDERS FROM TIME TO TIME ALSO GAVE THEM POSITIVE SIZE, SO PATIENTS WITH BIPOLAR THOUGHT THEY WERE CREATIVE WHEN HYPOMANIC AND WE DISCUSSED THE RISKS AN BENEFITS OF TREATMENT IN TERMS OF CURTAILING WHAT THEY SAW AS POSITIVE ASPECTS OF THEIR ILLNESS P SO WE SHALL APPRECIATE THAT AND NONETHELESS CONDUCT RESEARCH AREAS THAT LEAD LOGICALLY TO PREVENTION IF THAT IS PROVIDED AS AN OPTION LET ME SUGGEST THIS, I DON'T WANT TO EWE USURP THE PROCESS, SUZANNE WILL USE THE FEEDBACK TO CRAFT A LANGUAGE ACCEPTABLE AND BRING THAT LANGUAGE BACK TO THE COMMITTEE FOR FURTHE DISCUSSION. I THINK THAT MIGHT NEED TO BE A SEPARATE AGENDA ITEM. BEFORE THE NEXT MEETING. >> MY HOPE WAS TO BRING A FINAL DRAFT TO COMMITTEE TO APPROVE IN JULY, IF WE BRING MORE LANGUAGE TO TALK ABOUT WE WON'T APPROVE UNTIL OCTOBER. >> SO LET'S TRY TO GET LANGUAGE TO THE COMMITTEE AND GET IT OUT VIA EMAIL GET FEEDBACK ON THAT SO THAT WE CAN HAVE WHAT WILL HOPEFULLY BE, IF NOT IT'S NOT BUT HOPEFULLY AN ACCEPTABLE DRAFT THAT COVERS THIS ISSUE BY JULY. >> WE CAN DO THAT WITH OUR REVISED LANGUAGE WE CAN OF COURSE ON THE ENTIRE STRATEGIC PLAN, SHARE IT WITH THE COMMITTEE AND WE CAN TAKE FEEDBACK AT THAT TIME TRY HARD TO GET FEEDBACK INCORPORATED, HOPEFULLY NOT A PROBLEM. >> AN IMPORTANT ISSUE TO HIGH HEIGHT. >> IT WILL COME UP IN MANY PLAYS IN THE PLAN, THREE IS NOT THE ONLY ONE. >> WE'RE WELL PAST. ARE THERE ANY OTHER ISSUES OF -- THAT REALLY REQUIRE FURTHER DISCUSSION? I THINK IT'S WONDERFUL WE'RE ALL WILLING TO SIT HERE AT THE TABLE WELL PAST THE 12 O'CLOCK HOUR FOR LUNCH BUT I DO WANT TO BE RESPECTFUL OF YOUR TIME. SO LET'S TRY TO KEEP IT TO REAL ISSUES WE NEED TO DISCUSS AMONG OURSELVES. >> ALLISON. >> I SENT THIS THAT QUESTION FIVE. ON -- IN SECTION 5 UNDER THE SECTION ON HOUSING, WHERE IT TALKS ABOUT THE FINAL RULE FROM THE CENTERS FOR MEDICAID SERVICES, THAT RULING REALLY STRESSES THE IMPORTNCE OF PERSON-CENTERED PLANNING AND I FELT LIKE THAT PHRASE WAS MISSING. FROM THE PARAGRAPH AND PONT TO BE IN THERE BECAUSE IT CAPTURE IT IS ESSENCE OF THE FINAL. >> SO WE CAN ADD THAT. I'LL TALK TO YOU ABOUT THE SPECIFIC SPOT. >> SUSAN, THIS IS MELISSA HARRIS WITH CMS. AND -- (OVERLAPPING SPEAKERS) >> FIRST I APOLOGIZE FOR NOT BEING THERE IN PERSON AND BEING ON PHONE. I WOULD LIKE TO SEND FOR CONSIDERATION JUST A COUPLE OF PARAGRAPHS ABOUT MEDICAID FUNDED SERVICES. FOR POSSIBLE INSERTION INTON'T CHAIER 5. I DON'T WANT MEDICAID DOMINATE THE CONVERSATION, IT'S NOT JUST A CAN'TER ON MEDICAID FUNDING. BUT SINCE MEDICAID IS SUCH A MAJOR FUNDER OF SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER, I WOULD LIKE THERE TO BE SOME REALLY HIGH-LEVEL INFORMATION IF NOTHING ELSE ABOUT WHERE READERS CAN GO FOR ANSWERS TO QUESTIONS ON WHAT MEDICAID DOES AND DOES NOT COVER AND WHAT KINDS OF DECISIONS ARE FOR THE STATE TO MAKE IN CROSSING ITS MEDICAID PROGRAM. I DID NOTE WITH SOME INTEREST SUGGESTION ABOUT EMBEDDING PERSON CENTER LANGUAGE AND I CAN WORK TO DO THAT AS WELL. >> THE THAT WOULD HELP. THANK YOU. ANY OTHER ISSUES THAT YOU FEEL ARE PRESSING? IN TERMS OF THE STRATEGIC PLAN AND WHAT YOU HAVE READ IN TERMS OF CONTENT? >> WITH THAT, PLEASE URGE Y'ALL TO READ THE PLAN CAREFULLY IF NOT ALREADY AND SEND SUGGESTIONS FOR EDITS OF A SIMPLER NATURE TO IACC STAFF, WE WILL GET OUT REVISED VERSIONS AS SOON AS THEY CAN. SO WE CAN HAVE AGREEABLE TEXT IN JULY. >> I HAVE A DEADLINE FOR EVERYBODY, MAY 5 TO GET FEEDBACK YOU WANT TO GET AND OARC WILL WORK ON EDITS. >> >> DO YOU HAVE ANY OTHER BUSINESS THE ATTEND TO? YES SO CORE VALUES IN STRATEGIC PLAN, THERE WAS RECOMMENDATION FROM WORKING GROUP ONE TO ADD EQUITY TO THE VALUES, CORE VALUE SPIRIT COLLABORATION CONSUMER FOCUSED ACTION AND ACCOUNTABILITY THAT WERE DEVELOPED BY FIRST GROUP IACC THAT WORKED ON THIS PLAN WHICH ALLISON WAS PART OF. WANTED TO KNOW IF YOU FEEL THAT EQUITY WOULD BE A GOOD THING TO ADD HERE. DOES THE COMMITTEE SEEM LIKE THEY -- I SEE HEADS NODDING. >> ANY OBJECTION? >> ANY OBJECTION TO ADDING EQUITY AS VALUE? ALL RIGHT. GREAT. THAT IS GOOD. I WANTED TO BRIEFLY TELL YOU BUDGET RECOMMENDATIONS WE HAVE BEEN WORKING WITH DAVID MANNDELL FOR SERVICES BUDGET RECOMMENDATIONS, NOT IN IS VERSION OF THE PLAN BUT WE HAVE A PLAN TO DEVELOP DATA TO WORK WITH SO THAT WILL COME TO THE COMMITTEE AT A LATER DATE. AND IN TERMS OF RESEARCH BUDGET RECOMMENDATIONS OARC IS MAKING PROGRESS GATHERING DATA THAT WE CAN USE WITH THE SMALL GROUP THAT VOLUNTEERED TO WORK ON THIS AND WE'LL GET IN TOUCH WITH YOU AFTER THIS MEETING. WE'RE GOING TO GET THE COMMENTS IN BY FIFTH, REVISING DRAFTS AND SUBMITTING THEM TO THE FULL EYE CONTACT FOR REVIEW. AND WORKING ON FINAL DOCUMENT. SO BEFORE LUNCH WE WOULD LIKE TO TAKE A PHOTO OF THE WHOLE COMMITTEE. WE WILL WITH PUBLIC COMMENT PERIOD. WE'RE STARTING TEN MINUTES LATE SO WE'LL TAKE THAT INTO CONSIDERATION. WE'LL TRY TO CATCH UP LATER ON BUT IT'S IMPORTANT WE DO HEAR FROM THE PUBLIC MEMBERS. SO THE PUBLIC COMMENT SESSION WILL BE DIVIDED INTO THREE SECTIONS, FIRST WE HAVE THE FIRST HALF HOUR FOR THE ORAL PUBLIC COMMENT. THEN THE 15 MINUTES THE FOLLOWING 15 MINUTES WILL HAVE A SUMMARY OF WRITTEN PUBLIC COMMENTS WE RECEIVED AND THEN WE'LL HAVE THE OPPORTUNITY TO DISCUSS PUBLIC COMMENTS AS A COMMITTEE. FINE. I WOULD LIKE TO INTRODUCE THE FIRST SPEAKER AND THAT IS SHERRI CHASE. REMOON YOU SUSAN, HOW MUCH TIME DOES EACH SPEAKER HAVE? >> WE HAVE THREE MINUTES FOR EACH SPEAKER AND TWO MINUTE TRANSITION. >> FROM I'LL BE TIMING. SHERRI, IF YOU CAN GO UP TO THE PODIUM. ARE YOU HERE? WE'LL MOVE THE NEXT ONE THEN COME BACK TO SHERRI. MIKE LOW IS THE NEXT PUBLIC COMMENTER. PLEASE GO TO THE PODIUM. >> GOOD AFTERNOON. MY NAME IS MIKE, I WOULD LIKE TO THANK THIS COMMITTEE FOR THE TIME AND EFFORTS SPENT TOWARDS IMPROVING THE LIVES OF PEOPLE AFFECTED BY AUTISM SPECTRUM DISORDER. I APPRECIATE THE OPPORTUNITY SHARE MY THOUGHTS REGARDING HOW WE CAN HELP PEOPLE AFFECTED BY ASD. MY 17-YEAR-OLD DAUGHTER WAS DIAGNOSED WITH AS BERGERES SYNDROME AT AGE 10, PRIOR TO DIAGNOSIS MY DAUGHTER VISITED MANY DOCTORS INCLUDING PEDIATRICIANS, GASTROENTEROLOGISTS, PEDIATRIC NEUROLOGISTS, BEHAVIORAL PSYCHOLOGISTS, CHILD PSYCHOLOGISTS AND SPEECH THERAPISTS. ALL THE WHILE MY DAUGHTER STRUGGLED IN SCHOOL, STRUGGLED TO KEEP FRIENDS, STRUGGLED WITH CHANGES IN ROUTINE AND OTHER STRUGGLES. FINAL STRAW WAS THE ONSET OF SENSORY PROCESSING ISSUES. WHEN IT WAS FINALLY DETERMINED MY DAUGHTER HAD ASD IT WAS HER MOTHER WHO MADE THE DIAGNOSE SEW NOSEYS. IN THE SEVENS YEARS SINCE MY DAUGHTER WAS DIAGNOSED SHE HAS MATURED INTO AN IMPRESSIVE YOUNG LADY, SHE HAS SEVERAL FRIENDS, DOING WELL IN SCHOOL, HAS ESTABLISHED HER OWN BUSINESS, ACCEPTED BY MEREDITH COLLEGE IN NORTH CAROLINA. WHILE I'M GRATEFUL MY DAUGHTER ISING WELL I CAN'T GET PAST THE FACT FACT IT TOOK TEN YEARS TO DIAGNOSE AND IDENTIFY AND IMPLEMENT THE NEEDED INTERVENTIONS. EVERY DAY I WONDER IF THE DIAGNOSIS INTERVENTIONS WOULD HAVE COME SOONER HAD MY DAUGHTER BEEN SCREENED. MY T FACT MY DAUGHTER WAS NEVER SEEN SCREENED IS ESPECIALLY BOTHER SOME BECAUSE TODAY THERE'S STILL CHILDREN WHO ARE NOT BEING SCREENED FOR IT. IN JANUARY OF 2013 THEN DIRECTOR TO HAVE NATIONAL INSTITUTE OF OMEN TALL HEALTH, DR. THOMAS INSEL GAVE A TED TALK TOWARD A NEW UNDERSTANDING OF MENTAL ILLNESS. DURING HIS TALK DR. INSEL MADE THE VERY SIMPLE POINT THAT EARLY DETECTION AND EARLY INTERVENTION WILL PROVIDE THE BEST OUTCOMES FOR MENTAL ILLNESS. TO QUOTE HIM, THE GOOD NEWS STORIES IN MEDICINE ARE EARLY DETECTION, EARLY ENTERVENTION. IF E WAITED UNTIL THE HEART ATTACK WE WOULD BE SACRIFICING 1.1 MILLION LIVES EVERY YEAR IN THIS COUNTRY TO HEART DISEASE. I BELIEVE THAT BY NOT SCREENING EVERY CHILD FOR ASD EARLY IN LIFE AND OFTEN DURING DEVELOPMENT, QUALITY OF LIFE IS SACRIFICED FOR INDIVIDUALS AND THEIR FAMILIES. EARLY DETECTION IS POSSIBLE FOR MANY CASES OF ASD BUT EARLY DETECTION WILL NOT HAPPEN BY CHANCE. TODAY I AM URGING EVEN BEGGING THE COMMITTEE TO MAKE IT A TOP PRIORITY TO ENSURE EVERY CHILD IS SCREENED FASD PER RECOMMENDATIONS OF AMERICAN ACADEMY OF PEDIATRICS. THE CURRENT MODEL OF RECOMMENDING PEDIATRICIANS PROVIDE SCREENING ISN'T DOING THE JOB BUT N THIS CAN BE FIXED WITH IMAGINATION AND EFFORT AND ACTIONABLE AND MEASURABLE PLAN TO ENSURE ALL CHILDREN ARE SCREENED FOR ASD IS DESPERATELY NEEDED. I AM AWARE THAT SOME OBSTACLES STAND IN THE PATH OF ACHIEVING SCREENING FOR EVERY CHILD AND I UNDERSTAND THAT THERE IS MUCH MORE THAT NEEDS TO BE ACCOMPLISHED. SCREENING FOR ASD, IMPROVE KNOWLEDGE, BETTER DIAGNOSTIC TOOLS AN EFFECTIVE INTERVENTIONS COME IN THE FUTURE, THOSE AFFECTED BY ASD WILL NOT FULLY BENEFIT FROM CURRENT INTERVENTION AND FUTURE ADVANCES UNLESS IDENTIFIED IN TIMELY MANNER. SCREENING IS THE FUNDAMENTAL FIRST STEP TO LAY A SOLID FOUNDATION FOR MANAGING A SD IN THE FUTURE BY PROVIDING FAMILIES WITH KNOWLEDGE TO ALLOW THEM TO GIN SOLVING THE PUZZLE. THANK YOU. >> THANK YOU VERY MUCH. [APPLAUSE] THANK YOU FOR TRAVELING TO TAKE UP THIS IMPORTANT SCREENING, THAT'S TAKEN IN THE PAST AND ON THE AGENDA FOR FUTURE MEETINGS. THE NEXT SPEAKER BACK TO THE FIRST SPEAKER SHERRI CHASE IS AVAILABLE NOW. WE'RE GOING TO MOVE TO THE NEXT, WE'LL COME BACK WHEN SHE HAS HER SPEECH. ALBERT ANAYAKI. HE WAS HERE. >> GOOD AFTERNOON. THIS IS ALBERT (INAUDIBLE) I'M A FATHER OF A SON WITH AUTISM -- Q. COULD YOU MOVE CLOSER TO MICROPHONE. >> YES, SIR. I'M A FATHER OF 27 YEARS SON WITH AUTISM, HE'S SEVERELY AFFECTED. AND BEFORE I START I WOULD LIKE TO CONGRATULATE YOU FOR YOUR NEW POSITION. AND I HOPE UNDER YOUR LEADERSHIP THERE WILL BE CHANGES WITHIN IACC AND ALSO HOPING UNDER LEADERSHIP THERE'S TREATMENT MEDICATION FOR MY SON AND ALMOST 1 MILLION CHILDREN ACROSS THE COUNTRY. UNFORTUNATELY, IN A SPACE OF SEVEN YEARS, IACC HAS SPENT MORE THAN $1.7 BILLION. AT THE END OF TODAY, THEY DID NOT HELP MY SON FOR ANYTHING, NOT EVEN A BIT, ZERO. IF I'M STANDING HERE, THIS AGENCY HAS NOT HELPED ME WHATSOEVER. HOW MANY RESEARCH WE HAVE TO DO ON GENETIC? I DID VERY QUICK SEARCH, THERE ARE MORE THAN 176,000 RESEARCH ON THE GENETIC, HOW MANY MORE YOU NEED TO DO TO SEE THAT THIS IS NOT GENETIC? THIS IS ENVIRONMENTAL. WE NEED TO LOOK AT THAT WAY. YOU CANNOT, YOU CANNOT FIND WHAT IS GOING ON IN THE BRAIN BY TESTING THE SALIVA OR THE BLOOD. THE GENETIC PATTERN IN THE BRAIN IS COMPLETELY DIFFERENT TO WHAT YOU GET FROM THE SALIVA AND BLOOD SAMPLE, EVEN THOUGH I'M PARTICIPATE IN THIS PROGRAM, THE SIMON FOUNDATION MY FAMILY IS THERE, I ONLY SO GRATEFUL TO SIMON FOUNDATION BUT IT'S STYLO I DON'T THINK THAT'S GOING HAVE THE ANSWER. THE ANSWER IS GOING TO BE TO SOMATIC MUTATION. WHICH REVEALS THE NEURON HISTORY, HOW IT STARTED AND HOW IT TURNS OUT, I'M BEGGING YOU, ASKING YOU IF YOU COULD SET UP THE WORKSHOP, I ONLY FIND ONE PERSON THAT IS DOING THIS STUDY. THANKS TO DR. DAVID AMARAL, DIRECTOR OF THE MIND INSTITUTE WORKING HARD ON THE BRAIN BANK. I'M SO GRATEFUL TO SIMON FOUNDATION FUNDING THE BRAIN BANK. WE NEED THE LOOK AT SOMATIC MUTATION OF THE BRAIN OF THESE CHILDREN. I HOPE THIS NEW AREA OF RESEARCH COULD BE PRIORITY FOR THIS IACC TO FIND OUT WHAT HAS GONE WRONG WITH OUR CHILDREN AND HOW TO FIX IT. I NEED YOU TO TELL ME YOU ARE LOOKING INTO THIS AND LET ME KNOW IF THIS IS POSSIBLE. I'M ASKING OTHER REPRESENTATIVE IN HERE TO EXPLAIN TO RESEARCHERS DOING SOMATIC MUTATION OF THE BRAIN TO COME TO THIS WORKSHOP IF YOU ARE ALLOWED AT SUCH WORKSHOP AND I HOPE THAT DAVID -- AMARAL GIVE SOME INFORMATION HOW THE BRAIN BANK IS WORKING AND HOW RESEARCH IS FUNDED. OH, TWO OTHER THINGS I WAS GOING TO TELL YOU. >> DO I'M GOING TO ASK YOU TO WRAP UP, THREE MINUTES IS GONE. TICK 30 SECONDS TO P -- TO WRAP UP. >> GIVE ME TWO MORE MINUTES. ACCORDING TO SIMON FOUNDATION 42% OF PARENTS BELIEVE VACCINE CAUSE AUTISM IN CHILDREN. IN 2009 DR. INSEL INVITED NATIONAL VACCINE ADVISORY COMMITTEE TO HERE AFTER SO MANY MEETINGS THEY PROPOSE NEW -- NUMBER OF RESEARCH PROTOCOL DONE TO VERIFY IF VACCINE CAUSES AUTISM OR NOT. NOT A SINGLE ONE WAS DONE. THEY SPENT $1.7 BILLION, YOU TELL ME THEY DON'T HAVE $100,000 TO -- SOME OF THESE STUDIES TO THIS AGENCY. THEY HAVEN'T DONE. SO MANY PATTERNS COMING HERE TIME AFTER TIME. ASKING WE NEED TO STUDY SEEN VACCINATE AND UNVACCINATED CHILDREN. THERE'S NO RESEARCH. IF CENTERS FOR DISEASE CONTROL BELIEVES VACCINE DON'T CAUSE AUTISM, WHAT IS THE BIG DEAL, WHY SO MANY YEARS TEN YEARS 15 YEARS WE ARE ASKING CENTERS DISEASE CONTROL REPRESENTING SITTING HERE WHY DON'T YOU DO IT? WHAT IS THE BIG DEAL? IF YOU THINK VACCINE IS SO SAFE AND DOESN'T CAUSE AUTISM, WHY DON'T YOU FUND IT? BUT YOU SHOULD NOT STUDY BECAUSE NOBODY TRUSTS CENTERS FOR DISEASE CONTROL, I DON'T TRUST NEITHER. THIS STUDY HAS TO BE BY INDEPENDENT RESEARCHERS. >> I'M AFRAID YOUR TIME IS UP BUT APPRECIATE THE COMMENTS. PLEASE TAKE YOUR SEAT. WE NEED TO MOVE TO THE NEXT PERSON. >> I NEED TWO MINUTES. >> I APPRECIATE THE COMMENTS. I NEED YOU TO SIT DOWN NOW. THANK YOU VERY MUCH. APPRECIATE IT. WE'LL HAVE -- >> I CAME FROM CALIFORNIA. THAT IS NOT FAIR. I PAY FOR MY EXPENSES TO COME HERE AND THREE MINUTES AND YOU ALSO ELIMINATED THE NUMBER OF PRESENTATIONS THAT COULD HAPPEN A YEAR TO ONE THAT'S NOT RIGHT EITHER. >> I APPRECIATE THAT FEEDBACK AS WELL AND WE WILL CONSIDER THE PUBLIC COMMENT PERIOD BUT I NEED TO MOVE TO THE NEXT PERSON TO GIVE MS. CHASE, ARE YOU READY? PLEASE. THANK YOU VERY MUCH. (OFF MIC) >> MY SON ALEX HAS AUTISM HE JUST WON AN AWARD FOR REFLECTIONS THIS PAST YEAR, HE WAS NATIONAL MENTION, WON STATE OF MARYLAND, HE IS A CHILD VERY LIMITED IN VERBALIZATION, CAME OUT THROUGH MAKING HIS OWN VIDEO. AND UNFORTUNATELY I DIDN'T BRING THE DVD NEXT MEETING I WILL, I WILL BE HIM SPEAKING BUT THAT IS NOT MY TOPIC BUT PROMISED TO BRING HIM TO SHOW Y'ALL BECAUSE HE IS A WINNER. I'M SHERRI CHASE, A WIDOWED MOTHER OF 20-YEAR-OLD SON NAMED ALEX CHASE AUTISM FROM POISENNED BY ARSENIC BY A LAWN FERTILIZER AT AGE 2. HE HAS A LIFE SENTENCE, WITH ALL THE ENTERINTERVENTION, HE REMAINS SHORT ON THE ABILITY TO FULLY CONVERSE. THIS EMERGING YOUNG MAN WHO WAS SO EAGERLY WANTS TO PLEASE HAS OUTBURSTS PREVENTING HIM FROM REACHING HIS INTELLECTUAL POTENTIAL FOR AT THE MAGICAL AGE OF 21 HIS EDUCATIONAL AND AUTISM WAIVER SUPPORTS WILL DISAPPEAR. WE AS A NATION NEED INTERVENTIONS IN DETAILED OBTAINABLE RESOURCES THAT HAVE AND HAVE NOT WORKED FOR OTHERS ON THE SPECTRUM TO BE PUBLICIZED RESEARCH AND CREATED VIA INTERACTIVE WEBSITE SPONSORED BY THIS VERY WONDERFUL GROUP. THIS MUST INCLUDE METHODS TO DETOXIFY THE OVERBURDENED SYSTEMS P IT IS THOSE WHO ARE ALREADY ON THE SPECTRUM AND LEAVING THE PUBLIC EDUCATION AS WELL AS OTHER ADULTS THAT NEED IMMEDIATE SUPPORT. WHAT IS VALUE? INDIVIDUALS LIKE WANTING TO CONTRIBUTE TO SOCIETY. THEY CRY OUT FOR HELP VIA BEHAVIORS iPADS WORDS AND FAMILY AND THERE IS NO TIME TO WASTE. RATHER THAN ALLOWING THEM TO WASTE TALL LENS LET'S PROPOSE SECONDARY VOCATIONAL TRAINING WITH MODIFIED CURRICULUM AND MANDATORY MODIFIED PROGRAMS FOR DIFFERENT LEARNERS OF COMMUNITY COLLEGES. I ACTUALLY COME UP WITH PROVEN LEARNING MODULES FOR CONTINUING EDUCATION FOR THOSE IN THE SPECTRUM. UNFORTUNATELY DOORS ND DD A FALL SHORT IN THIS ARENA. SECONDLY, SMALL AND INDEPENDENT SCIENTISTS SHOULD HAVE ACCESS TO OBTAINABLE FUNDING TO CREATE DEVICES THAT WILL ALLOW THOSE ON THE SPECTRUM TO GAIN CONTROL OVER AND ACTIVE -- EXCUSE ME UNDERACTIVE NEUROLOGICAL SYSTEMS. OUR YOUNG INTUITIVE SCIENTISTS LEAVING THE COLLEGE ENVIRONMENT WHO ARE DEVELOPING WEARABLE ELECTRONICS GREW UP WITH THOSE ON THE SPECTRUM AND INTEGRATED LEARNING ENVIRONMENTS. THEY SAW FIRSTHAND WHAT IS NEEDED TO FUNCTION. I ASK WITHIN TWO MONTHS KINDLY, DESPERATELY ASK YOU CREATE A NATIONAL WEBSITE WITH INFORMATION AND INTERACTIVE FACTS, WHAT HAS WORKED AND WHAT HAS NOT, AND DETAILS HOW TO IMPLEMENT THESE PROCEDURES PROVIDED BY PRACTITIONERS, AND BY FAMILIES. AS WELL AS SHORT ROUTE FOR FUNDING DEVICE DEVELOPMENT. WE MUST PUT OURSELVES IN THE SHOES OF A PERSON ON THE SPECTRUM AS ALEX BROTHER SAYS, IT COULD HAVE BEEN ME, MOM. Z WE MUST DO THE RIGHT THING AND PULL OUT THE STOPS AND DO WHAT WE HAVE WANTED -- WOULD HAVE WANTED SOMEONE TO DO FOR EACH OF US ON THE SPECTRUM. YOUNG MAN TRAPPED INSIDE MY SON'S BODY YEARNING PLEASE HELP EACH OF THESE PEOPLE RISE AND SHINE. IN THE FUTURE IT WILL SAVE TIME AND MILLIONS OF TAXPAYERS DOLLARS WHEN WE CAN SEE EACH PERSON RISING TO THEIR OWN INDIVIDUAL AND FULLEST POTENTIAL AS CONTRIBUTORY CITIZENS. I THANK YOU FOR LISTENING TO ME AND I JUST WILL TAKE A COUPLE MORE SECONDS THAT I SHARED. MY SON WHO IS EXTREMELY INTELLIGENT, VERY SOCIAL EXCEPT FOR THE ABILITY TO HAVE A FULL CONVERSATION, VARSITY CHEER LEAD, HE'S MASCOT FOR THE SCHOOL, LAST PERSON AT THE BY CENTENNIAL TO SING THE NATIONAL ANTHEM IN BALTIMORE FOR THE BY CENTENNIAL BUT CAN'T REALLY HAVE A CONVERSATION. BUT RECENTLY THE PAST COUPLE OF YEARS HE WOULD BE DOING A FAVORITE ACTIVITY, SUDDENLY OUT OF THE BLUE START HID HITTING HIS HEAD PULLING HIS HAIR AND IT WILL LAST FOR 15 MINUTES, WE THOUGHT IT WAS SEIZURES DOCTOR TO DOCTOR. >> THIS IS MY LAST COUPLE OF SECONDS I PROMISE. I WON'T BE RUDE. PLEASE TAKE A MOMENT TO LOOK UP A PARTICULAR HEADACHE SYNDROME, CAN I ASK FOR THE HE WILL ISING? >> SUCCT. >> THERE YOU GO. THAT IS WHAT HIS NEUROLOGIST THINKS HE'S SUFFERING FROM AND SEEING MORE PEOPLE WITH AUTISM, IT'S A SYNDROME PEOPLE OVER 50 THAT ARE MALES SOMETIMES HAVE, EXCRUCIATING NEUROLOGICAL HEADACHE OFTEN ACTING THE OCCIPITAL NERVE AND IT CAN EXPLAIN THESE MYSTERIOUS HEADACHES. SO WITH THAT I CLOSE AND BEG YOU LET'S FIND INTERACTIVE WAY TO SHARE FABULOUS KNOWLEDGE OF THINGS THAT WORK AND DON'T WORK THAT WILL HOPEFULLY HELP EACH OF OUR PEOPLE THAT HAVE AUTISM BE THE BEST AND MOST CONTRIBUTORY CITIZENS THEY CAN BE. THANK YOU. >> THANK YOU. MS. CHASE. [APPLAUSE] >> YOU'RE WELCOME. GOD SPEED. >> NEXT I'LL ASK (INDISCERNIBLE) AND COLLIN JOHNSON DID I GET THAT RIGHT? >> GOOD AFTERNOON. MY NAME IS (INAUDIBLE) JOHNSON. I AM FOUNDER AND CEO OF BRIGHT MINDS INSTITUTE FOR AUTISM IN NEW JERSEY. OUR ISSUES, I WANT THE THANK YOU ALL FOR ALLOWING US TO COME AND I HAVE BEEN INSPIRED BY MUCH OF THE CONVERSATION THAT HAS GONE ON. SO IT'S BEEN A WONDERFUL DAY FOR ME. ONE OF THE THINGS THAT'S EXCITING FOR US IS MOST RECENTLY WE HAVE BEEN WORKING WITH THE NAACP ON THE APPLICANTS FOR AUTISM. THE BRIGHT MINDS INSTITUTE HAS TRED TO BRING TO THE ATTENTION OF THE ORGANIZATION THE OWING MEMBER CHILDREN IN URBAN AREAS IN MINORITY COMMUNITIES THAT ARE SUFFERING FROM ONE OF THE FIVE SPECTRUM DISORDERS. WE HAVE BEEN LOOKING FOR A WHILE AT LITTLE BABY PROCESSES OF TREATMENT AND WE HAVEN'T BEEN ABLE TO ESTABLISH MUCH MORE THAN DAY PROGRAMS. AND MOST OF OUR PLACES FOR TREATMENT ARE OUT OF STATE OR OUT OF CITY. WE ARE WORKING ON THAT. BUT I HAVE TO TELL YOU AS I LISTEN TO SO MUCH OF WHAT GOES ON HERE TODAY, I KIND OF WONDER MAYBE BECAUSE YOU LIVE IN AFFLUENT NEIGHBORHOODS YOU DON'T HAVE ANY ISSUES THAT WE HAVE TO ADDRESS ON A DAILY BASIS. WE HAVE ONE SCHOOL, NUMBER 22 SCHOOL, THAT HAS OVER 250 KIDS. THAT HAVE -- ALL HAVE IEPs. THE BOARD OF EDUCATION WAITS UNTIL THE 6TH AND 7TH GRADE BEFORE THEY START TO DO TESTING. UNLESS THE PARENT MAKES A SPECIAL REQUEST. AND THAT THE PARENT IS NOT TOLD TO MAKE A SPECIAL REQUEST, THEY DON'T KNOW TO DO IT. THEY OBSERVE BEHAVIORS, AND THEY TRY TO FIGURE OUT WHAT'S WRONG AND HOPEFULLY FRIENDS AND NEIGHBORS COME TO THE AID AND ENCOURAGE THEM TO SEE THEIR DOCTOR AND GET A BETTER DIAGNOSIS. WE NEED HELP FROM AN ORGANIZATION LIKE THE AUTISM COORDINATING COMMITTEE TO ADDRESS URBAN ISSUES ALL OVER THE UNITED STATES. WE HAPPEN TO BE ONE OF THE HIGHER INCIDENCE OF AUTISM IN NEW JERSEY FOR THE COUNTRY RATHER, AND WE STRUGGLE WITH WHAT TO DO SO WHILE YOU ALL ARE DESIGNING YOUR POLICIES, PLEASE PAY ATTENTION TO THE FACT SO LITTLE WHAT YOU SAY HAS MUCH TO DO WITH THE URBAN COMMUNITIES. AND YOU'RE MISSING A BIG HUGE GAP. IN THE POPULATION THAT NEEDS THE MOST HELP. >> THANK YOU. [APPLAUSE] >> MY NAME ISCAL LEN JOHNSON I WORK WITH BRIGHT MINDS ALSO. MY ISSUES ARE -- IS CALLEN JOHNSON. MY ISSUES ARE ONE OF SAFETY. I THINK, I ACTUALLY WORKED WITH JERSEY CITY POLICE DEPARTMENT AND TRAINING HOW TO HANDLE AUTISTIC PEOPLE WITH CARE. A LOT OF POLICE OFFICERS, SCHOOL SECURITY, EVEN WHAT DO YOU CALL THEM IN THE JAILS? >> THE PRISON -- THEN ON A WAY OF HOW TO -- THEY HAVE A WAY OF HOW TO HANDLE AUTISTIC PEOPLE SO WITH THE POLICE OFFICER WITH NO KNOWLEDGE THEY CAN HURT SOMEONE. THEY CAN HURT A CHILD. BADLY. THERE'S PLENTY OF I'M SORRY DENSE. A LOT OF PEOPLE DON'T KNOW, POLICE OFFICER IS A PLACE AUTISTIC PERSON ON HIS FACE DOWN, KNEE IN BACK YOU'RE SUFFOCATING BECAUSE THEY HAVE WEAK DIAPHRAGMS. THESE ARE THINGS POLICE OFFICERS DON'T KNOW. WHEN IDENTIFYING AUTISTIC PERSON IS SOMETHING THEY DON'T KNOW. DURING THE TRAINING THAT I GAVE HANDLE WITH CARE A LOT WEREN'T AWARE OF ANYTHING, WHAT DO YOU DO? POLICE OFFICERS ARE TRAINED TO RESPOND. REACT. A GESTURE THAT AUTISTIC PERSON CAN DO CAN CAUSE THEM TO SHOOT. THEY DON'T UNDERSTAND. MY THING IS MAKING POLICE OFFICERS SECURITY GUARDS IN THE SCHOOL SYSTEM, ALL AWARE OF HOW TO DEAL OR IDENTIFY AUTISTIC PEOPLE. >> THANK YOU VERY MUCH FOR THESE IMPORTANT COMMENTS. [APPLAUSE] >> NEXT DR. LINDA VARSU. >> GOOD AFTERNOON. MY NAME IS LINDA -- I'M ALLOWED TO BE -- GLAD TO BE HERE AGAIN. MY BRIEF PRESENTATION IS BASED ON THE CONSTITUTIONAL FREEDOM OF SPEECH. MY KNOWLEDGE AND EXPERTISE. EXPLAIN EPIDELLIC REGENERATION SO WE HAVE TO LOOK AT THE EPIGENETICS. IN GENETIC STUDIES WE DON'T HAVE THE POSSIBILITY OF THE TRIO, LIKE HAVE CHILD, MOTHER, FATHER. BECAUSE PARENTAL CHRONIC PARENTAL DENIAL AND USUALLY THE FATHER, 50% FAMILIES DENY IT IS PROBLEM. SO MOVE TO EPIGENETICS. EPIGENETICS SHALL WE HAVE TO SEE PRENATAL CONDITIONS, ENVIRONMENTAL PESTICIDES, DRUGS, HERBICIDES. UP HERE THIS IS (INDISCERNIBLE) STAND AROUND ALL OVER THE PLACE AND YOU KNOW HOW TOXIC IT IS. IT IS WORSE THAN THE DDD USED TO BE YEARS AGO. MY QUESTION IS, IS MONSANTO MORE IMPORTANT AND POWERFUL THAN NIH, ALL THE US GOVERNMENT? WHY WE DON'T PICK OUT FROM EVERYWHERE AS WE DID FOR -- UNHEALTHY DIET, GMO THEREFORE UNHEALTHY MICROBIOME. WE KNOW THE CONNECTION BETWEEN BRAIN AND GI, BETWEEN ALL THAT. ANIMAL STUDIES OF COURSE NO COMPARISON THE IMMUNE SYSTEM OF -- IS TOTALLY DIFFERENT FROM HUMANS BECAUSE THE GENOME OF ANIMALS IS DIFFERENT BECAUSE ADOPTED TO DIFFERENT ENVIRONMENT MEDICAL CONDITION AND NEEDS. OF COURSE, ALL ANIMALS LOVE AND PROTECT THEIR BABIES. BRAIN STUDIES NOW YOU SEE THESE BABY HERE LOOKING AT -- THE BRAIN, WE KNOW THAT NEUROIMAGING IS VERY INVASIVE TECHNIQUE. ESPECIALLY WHEN IT INVOLVES A YOUNG BRAIN COMPROMISED WITH AUTISM OR OTHER DISABILITY BECAUSE THE BRAIN IS A STRONG HUGE FIELD OF THE MAGNETIC FIELD PLUS THE ELECTROMAGNETIC RADIATION. BOTH WITH DELETERIOUS AFFECTS TOWARD SOME CONTRAST AGENTS AND DRUGS. MAKE A STORY IF YOU LOOK AT THE INTERNET YOU WILL SEE COMMENTS OF PATIENT GOING AFTER MRI AND WHAT THE COMPLAINTS ARE. AMAZING. YOU HAVE TO FIND THEM. AND ALSO WHAT YES, OUR BODY IS A CLOUD OF ENERGY WITH FREQUENCIES OF VIBRATION OF THE DIFFERENT MOLECULES, DIFFERENT SO WE ARE ENERGY AND ALSO ELECTRONS OF -- FROM THE EYE HYDROGEN AND THE MRI CHANGES THE SPLEEN AND THE ORIENTATION AND AFTER THE MRI NOT ALL ELECTRONS GAIN THE FIRST SPEED IN ROTATION. >> WE NEED TO WRAP UP PLEASE. >> I HAVE NOTHING TO SAY MORE THAN FOR EVERYONE TO AT THOSE THERE'S FANTASTIC DOCUMENTED WEBINARS. TO TAILOR IMMUNE AND ATTACHED NEUROLOGICAL SYSTEM OF BABIES, IS IMMATURE. SO WE HAVE AN IMMUNODEFICIENT MECHANISM THAT PLAYS POINT OF EARLY VACCINATION. PUBLICATIONS LASTING IS DOES NOT SHOW MUCH POSITIVE IMPACT IN THE LYES OF PEOPLE WITH AUTISM AND THEIR FAMILIES. PLEASE GOOGLE JOURNAL (INDISCERNIBLE) PROFESSOR AT STANFORD UNIVERSITY, PROFESSOR EPIDEMIOLOGY, WHAT HE DOES HE TAKES PUBLICATION FROM PEER REVIEWED JOURNAL. ANALYZES HIM AND FOUND THAT ONLY 5% OF PUBLICATION WE CAN COUNT ON THE FINDINGS OF THE -- >> THANK YOU VERY MUCH FOR YOUR COMMENTS. >> THANK YOU. >> AND WE APPRECIATE YOU BRINGING THEM TO OUR ATTENTION. NEXT I'LL ASK FINAL PUBLIC COMMENTER DINA GASNER. >> GOOD AFTERNOON, THANK YOU FOR THE OPPORTUNITY TO SPEAK HERE AND FOR YOUR HARD WORK. VERY BRIEFLY, I EDITED MY COMMENTS SINCE YOU HAVE IT IN WRITING BUT FOR THE RECORD VERBALLY HERE. I AM THE MOTHER OF A YOUNG MAN WHO HAS AUTISM. HE'S CURRENTLY ON TRACK TO GRADUATE FROM MARSHALL UNIVERSITY. STARTED OUT WITH A DIAGNOSIS OF IB AND HAS EVOLVED TO PDD. HE WILL GRADUATE WITH HONORS BY THE WAY WE'RE EXCITED ABOUT THAT. I'M WIFE MOTHER GRANDMOTHER AND Ph.D. CANDIDATE, VERY OLD Ph.D. CANDIDATE. AND I'M ALSO AUTISTIC ADULT WOMAN. MANY YEARS I SPENT ADVOCATING FOR MY SON HAS GIVEN PRIVILEGE IN TERMS OF BEING ABLE TO PARTICIPATE MEANINGFULLY IN THE NATIONAL AUTISM CONVERSATION. IN THE LAST YEAR IT WAS MY OPPORTUNITY AND HONOR TO SERVE AS REVIEWER LOOKING AT MILLIONS OF DOLLARS OF GRANT FUNDING. AND I HAVE TO TELL YOU THAT AFTER 12 HOURS OF GRANT REVIEW IT WAS PAINFULLY CLEAR TO ME THAT NOT A SINGLE PENNINE WAS GOING TO CHANGE MY FUTURE OR MY SON'S FUTURE OR THAT OF PEOPLE LIKE ME. THIS IS IN TOTAL DISREGARDED TO THE OUTCRIES OF AUTISTICS AND FAMILIES WHO WANT TO FOCUS ON QUALITY OF LIFE. I WOULD LIKE TO TALK TON'T HOW LIKE MY COLLEAUE JOHN, I DO GREATLY RESPECT THE NEED FOR RESEARCH THAT ADDRESSES THE INTENSITY OF THE SUFFERING THAT INVOLVES THESE CO-OCCURRING CONDITIONS. AND I WANT TO LOOK AT THE THINGS TO SUPPORT THOSE BUT ALSO LIKE US TO SPEND A CONSIDERABLE MORE AMOUNT OF MONEY LOOKING AT WHAT WE'RE GOING TO DO NOW. NOT WHERE WE'RE GOING OR WHERE WE HAVE BEEN BUT WHERE WE'RE GOING FUTURE. I BELIEVE IN SUPPORT RESEARCH THAT MINIMIZES THESE CO-OCCURRING CONDITIONS. MAYBE MEDICAL MARIJUANA FOR SEIZURE DISORDERS AND HYPERMOBILITY DISORDERS WE ARE NOT LOOKING AT NEARLY ENOUGH. I BELIEVE IN RESEARCH THAT WILL ADDRESS POLICY LIMITATIONINGS THAT CONTINUE TO RESULT IN ONGOING POVERTY AND ENSUING HOMELESSNESS WHICH IN AND OF ITSELF CONSTITUTES A NEW TRAUMA. HEALTHCARE DISPARITIES SUPPORT FOR THE LGBTQAI INTERSEXUALITY AND TRANSITIONING IN INDIVIDUALINGS THAT LIVE WITH AUTISM, TRAINING FOR DOCTORS DETISES AN SERVICE PROVIDERS TO FILL THE VOID IN HEALTHCARE ACCESS FOR PEOPLE WITH AUTISM. MORE ACCESSIBILITY TO SOCIAL SERVICES THAT WE'RE SUPPOSED TO BE RECEIVING BUT ACTUALLY ACT AS GATEKEEPERS INSTEAD OF FACILITATORS I'M GRATEFUL TO HAVE HAD A CONVERSATION ABOUT SOCIAL SECURITY TODAY, VOCATIONAL REHABILITATION, DENIES ACCESS TO PEOPLE WHO HAVE IQs OF 70s, FOOD STAMPS, SCHEDULE HIRING IS INACCESSIBLE, IT'S INACCESSIBLE FOR OUR POPULATION AND HOUSING. GENDER BIAS IS DESTROYING ANIMAL TREATING PEOPLE WITH AUTISM THEY DON'T MANIFEST BEFORE AGE EIGHT IN WAY UNTRAINED DIAGNOSTICIANS CAN FIND. I'M SAD TO SAY NONE OF THE RESEARCH THAT I LOOKED AT WAS GOING TO ADDRESS THIS. I HAD A RESEARCHER HERE THE LAST TIME I PRESENTED WHISPER TO ME IN A MEETING WHAT IS ELOPEMENT? THIS PERSON WAS TALKING AN'T OPTIMAL OUTCOMES LATER IN THE DAY. THIS REFLECT IT IS SILOED RELATIONSHIPS BETWEEN RESEARCH COMMUNITY AND THE AUTISTIC COMMUNITY. IN THAT SAME PATTERN I HOPE CONTRIBUTION NFAR JOHN STEVEN SHORE AND MYSELF AND STEVEN CAP WILL TALK INCORPORATING AUTISTIC RESEARCHERS IN THE DESIGN, THE RESEARCH, THE RECRUITMENT BY THE WAY, I CAN HELP YOU FIND A LOT OF AUTISTIC PARTICIPANTS. TO DO BETTER. WE CAN DO BETTER. I'M ALSO WANTING TO EXPRESS TO YOU THAT WE NEED TO INCLUDE AUTISTICS NOT JUST AS RESEARCHERS BUT COLLABORATORS. WE CAN TELL YOU WHY YOUR SAMPLE SIZE IS SMALL. WE CAN TELL YOU WHY ENVIRONMENT IS NOT CON DUE SY OR PEOPLE ARE NOT -- CONDUCIVE OR PEOPLE ARE NOT COMPETENT HOW TO ADDRESS THE POPULATION, ALL THIS LEADS TO CLEARER CLEANER BETTER OUTCOMES. THE NEXT RESEARCH STUDY I WILL LIKE TO SEE IS GOING TO AN EMPLOYMENT ENVIRONMENT AND TRAINING THAT EMPLOYER ON HOW TO INCLUDE PEOPLE WITH AUTISM INSTEAD OF DEMANDING PEOPLE WITH AUTISM DO WHAT EVERYBODY ELSE DOES WITH A 60-POUND PACK IN STILL LE TOE -- STILETTO HEELS. >> AID THANK YOU VERY MUCH. ELOPEMENT IS ONE OF THE TOPICS ON OUR AGENDA ON THE JULY MEETING. WE WILL HEAR ABOUT THAT PARTICULAR ISSUE. THANKS TO THE SPEAKERS FOR BRINGING UP THESE IMPORTANT ISSUES FOR THE GROUP TO CONSIDER. OBVIOUSLY WE COULD NOT ACCOMMODATE ALL THE PUBLIC COMMENT, WE'LL GET TO -- IS IT BURNING? WE'LL GET TO THESE COMMENTS FROM THE ECONOMY. -- FROM THE COMMITTEE. WE WANT TO MAKE SURE TO HEAR THE WRITTEN COMMENTS AS WELL. SO DR. KAREN MOWRER FROM OARC AND NIMH WILL PROVIDE SUMMARY OF WRITTEN COMMENTS THEN HAVE A CHANCE FOR THE COMMITTEE TO CONSIDER THE PUBLIC COMMENTS AS A WHOLE. >> HI, EVERYBODY. SO SINCE THE JANUARY MEETING THE EYE CONTACT RECEIVED WRITTEN PUBLIC COMMENTS FROM 16 COMMENTERS AND FOR THE PURPOSES OF THIS SUMMARY WE HAVE ORGANIZED THOSE UNDER SIX TOPICS. YOU HAVE ALL ON THE COMMITTEE BEEN PROVIDED THE COMMENTS IN FULL BUT THEY WILL BE SUMMARIZED BRIEFLY HERE. THE FIRST SETS OF COMMENTS ONSET OF VACCINES AND AUTISM, WE HAD SIX INDIVIDUALS COME IN ON THIS TOPIC. DR. LINDA VARSU ENCOURAGED THE AUTISM COMMUNITY TO WATCH THE DOCUMENTARY TITLED "VACCINES REVEALED" SHY SHE MENTIONED IN HER COMMENTS. MR. (INDISCERNIBLE) BELIEFS A LINK BETWEEN AUTISM AND COW'S MILK AND PROTEINS DR. IS IT LANE THINKS TYLENOL DRINKINGERS AUTISM, HE ALSO DISTRIBUTED A U.S. PATENT ON METHODS FOR TREATMENT OF AUTISM. MR. JOHN BEST BELIEVES AUTISM IS CAUSED BY MRY IN VACCINES AND IS FRUSTRATEED THAT THIS ISSUE IS NOT BEING ADDRESSED BY THE EYE CONTACT. -- IACC. HOW DOES GLYCO SATE AFFECT CHILDREN WITH, ASD VERSUS THOSE WITHOUT ASD. HE ALSO ASKED THE IACC TO REQUEST CONGRESS INVESTIGATE THE CDC WHISTLE BLOWER ISSUE AND PROVIDE DEBRIEF OF STUDY ON AUTISM AND MMR VACCINE. MS. MAUREEN MILIC URGED END TO VACCINATIONS BECAUSE OF HER CONCERNS ABOUT AUTISM. SECOND TOPIC WAS AUTISM RESEARCH PRIORITIES AND WE HAD FIVER COMMENTS UNDER THIS TOPIC. INCLUDING THE FOLLOWING. DR. CARLOS GARY BELIEVES APPLY BEHAVIORAL ANALYSIS AN PROGRAMS SUCH AS TEACH ARE LIMITED IN THEIR ABILITY TO BENEFIT AUTISTIC INDIVIDUALS. HE BELIEVES AUTISTIC INDIVIDUALS HAVE SYNAPSE ACTIVITY PATTERNS THAT CAUSE THEM TO PERCEIVE REALITY DIFFERENTLY. DR. SIMON ASKED THE IACC TO DISCUSS HER COMMENTS, DESCRIBING LINKS BETWEEN AUTISM, DISRUPTIONS IN LANGUAGE DEVELOPMENT AND COMPLICATIONS RESULTING IN BRAIN INJURY SUCH AS UMBILICAL CORD CLAMPING AND ASPHYXIA AT BIRTH. SHE EXPRESSED INTEREST IN THE ORAL PUBLIC COMMENTS PRESENTED DURING THE JANUARY IACC MEETING AND BELIEVES MORE RESEARCH SHOULD BE DONE ON IDENTICAL TWINS DISCORDANT FOR AUTISM. MR. CHRIS STARGAZER ASKED GENETICS RESEARCH ON AUTISM BE DEPRIORITIZED IN FAVOR OF RESEARCH ONCO OCCURRING CONDITIONS AN BASIC NEUROSCIENCE RESEARCH TO UNDERSTAND THE HUMAN BRAIN. HE ALSO BELIEVES THAT RESEARCH PRIORITIES SHOULD BE SET TO ADDRESS ACTUAL NEEDS RATHER THAN BEING INFLUENCED BY OUTSIDE ORGANIZATIONS. MS. KELLY ISRAEL AND MS. JULIA BASCOM SELF-ADVOCACY NETWORK ASK MORE FUNDING GO TO LIFE SPAN OUTCOMES CO-OCCURRING CONDITIONS AND ASSOCIATED MEDICATIONS, ACCESS TO HEALTHCARE EFFECTIVENESS OF SUPPORTS AND SERVICES ASSISTIVE TECHNOLOGY, DIAGNOSTIC DISPARITIES AN PREVALENCE OF AUTISM IN ADULTS. ASAN ALSO URGED THE IACC TO PROMOTE INVOLVEMENT OF AUTISTIC ADULTS IN GRANT REVIEW, AND OTHER ASPECTS OF THE RESEARCH PROCESS. MS. GAIL ELBIC URGED THE IACC TO CONSIDER STUDIES ON THE EFFECT EFFECT OF SOY ON BRAIN DEVELOPMENT. THE THIRD TOPIC IS ADULT SERVICE NEEDS AND TRANSITION TO ADULTHOOD. FOUR COMMENTS UNDER THIS TOPIC. MS. LISA BERTONE EXPRESSED CONCERN ABOUT LACK OF HOUSING AND CARE OPTIONS FOR ADULTS WITH SEVERE AUTISM BEING CARED FOR BY AGING PARENTS. MS. MARY ANN DOOR WANTED TO MAKE AUTISM COMMUNITY AWARE OF THE 10TH ANNUAL HILL BRAND AUTISM SYMPOSIUM, BEING HELD TODAY ON THE TOPIC OF FOSTERING INDEPENDENCE FOR YOUNG ADULTS WITH AUTISM SPECTRUM DISORDER AND SHE HELPED ORGANIZE ACCESS THE A LIVE STREAM OF THE SYMPOSIUM FOR HER LOCAL COMMUNITY. ASAN EXPRESS CONCERN TO THE 2012 PORTFOLIO ANALYSIS DATA 2% OF NIH AUTISM RESEARCH FUNDING WENT TO RESEARCH ON SERVICE EFFECTIVENESS. WHILE ONLY 1% WENT TO RESEARCH ON OUTCOMES ACROSS THE LIFE SPAN. MS. CAROL FEDORCAC SHARED RECENT CHALLENGES SHE FACE AS PUBLIC SCHOOL SYSTEM IS NOT ABLE TO PROVIDE SUFFICIENT SUPPORT TO 16-YEAR-OLD SON WITH AS BERGERES. FOURTH TOPIC IS AUTISM DIAGNOSIS AND INTERVENTIONS. WE HAD THREE COMMENTS UNDER THIS TOPIC. MR. JESSIE BARE WOULD LIKE TO KNOW HOW INDIVIDUALS WITH AUTISM TO CUTTING EDGE TREATMENTS. DR. EILEEN NICOLE SIMON BELIEVES THAT OMISSION OF DEVELOPMENTAL LANGUAGE DISORDER FROM THE ASD DIAGNOSTIC CRITERIA IN DSM VERY DISREGARDS AUTISM IS EVIDENT FROM EARLY CHILDHOOD. MR. STARGAZER BELIEVE EDUCATION TAILORED TO FOCUS ON AUTISTIC INIVIDUAL STRENGTHS AND INTERESTS, HE ALSO BELIEVES THAT INTERVENTION STRATEGIES SHOULD CONSIDER PSYCHOLOGY OF EACH INDIVIDUAL WITH ASD AND THAT INTENSIVE INTERVENTIONS OFTEN DO NOT ADDRESS ROOT CAUSE OF BEHAVIORAL CHALLENGES. THE FIFTH TOPIC WAS THE ROLE OF THE IACC, WE SHAD THREE COMMENTS UNDER THIS TOPIC. FEELS HIS COMMENTS FROM PREVIOUS MEETINGS WERE NOT ADDRESSED BY THE IACC DURING DISCUSSION OF PUBLIC COMMENTS. HE RECOMMENDED THE IACC FACILITATE A SURVEY OF PARTS OF ASD CHILDREN IN THE UNITED STATES. DR. EILEEN NICOLE SIMON WOULD LIKE HER COMMENTS TO BE DISCUSSED BY THE IACC RATHER THAN ONLY BEING INCLUDED IN A SUMMARY OF WRITTEN COMMENTS. MS. LISA LEADER LIGHT ON BEHALF OF SAFE MINDS EXPRESS CONCERN THE IACC IS NOT DOING ENOUGH TO ADDRESS THE PERSONAL SAFETY OF AUTISTIC INDIVIDUALS MOST SIGNIFICANT CONCERN OF THE AUTISTIC COMMUNITY, SAFE MINDS URGE IACC TO PRIORITIZE SOLUTIONS FOR ADDRESSING THE DOCUMENTED INCREASE IN MORTALITY AMONG INDIVIDUALS WITH AUTISM. LAST COMMENT ON THE TOPIC OF THE IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER, THAT WAS THAT ASAN CONTINUES TO HAVE PROFOUND CONCERNS ABOUT IACC STRATEGIC PLAN QUESTIONS. ASAN BELIEVE IT IS NEW STRATEGIC PLAN QUESTION REFLECTS INCREASING SCIENTIFIC CONSENSUS THAT AUTISM CANNOT AND SHOULD NOT BE CURED OR PREVENTED IN ADDITION LIFE SPANISH SHOES FOR AUTISTIC PEOPLE BE INCLUDED AS PART OF ALL OF THE STRATEGIC PLAN QUESTIONS. SO THAT CONCLUDES THE SUMMARY AND WE THANK EVERYONE AGAIN WHO SUPPLIED A WRITTEN PUBLIC COMMENTS. THANKS. >> THANK YOU, DR. MOWRER. NOW WE CAN TAKE COMMITTEE COMMENTS AND DISCUSSION ANT THE PUBLIC -- ABOUT PUBLIC COMMENTS. JOHN. >> I THINK THAT ONE THING THAT CAME THROUGH IN THE ORAL COMMENTS I THINK REALLY FIRST WITH MR. INYATI (PHONETIC) IS THAT WE HAVE TO RECOGNIZE THAT THESE MEN AND WOMEN THAT COME TO COMMENT, THEY COME ACROSS THE COUNTRY AT THEIR OWN EXPENSE, I UNDERSTAND REASONS WHY WE HAVE TO HAVE TIME LIMIT ON COMMENTARY. I'M NOT SUGGESTING WE CHANGE THAT HERE BECAUSE I KNOW WE HAVE A TIME CONSTRAINT. BUT AT THE SAME TIME I FEEL FOLKS LIKE HIM AND THE OTHER COMMENTERS DESECRETARY TO BE HEARD AND THEY DESERVE -- DESERVE TO BE HEARD AND DESERVE TO HAVE AN ANSWER. I WONDER IF WE COULD CREATE SOME KIND OF FORUM IN WHICH WE COULD CONSTRUCTIVELY ENGAGE WITH AUTISM COMMUNITY. I WONDER ALSO WITH RESPECTED TO SPECIFIC QUESTIONS ABOUT WHAT WE OTHER DOING LIKE HE AND OTHERS SAID RESEARCH X, RESEARCH Y YOU SHOULD BE RESEARCHING Z, I THINK WE HAVE PROGRAM PEOPLE, I KNOW THEY HAVE OTHER STUFF TO DO, SO MAYBE NOT SIMPLE AS JUST ANSWER THEM BUT I FEEL LIKE WE CAN ANSWER PEOPLE LIKE THAT WITH WHAT WE ARE DOING WITH RESPECT TO QUESTIONS. >> LET'S DO THAT. WE CAN DO THAT RIGHT NOW. I CAN DO THINGS I KNOW ABOUT. M. LOW MENTIONED EMPHASIS ON SCREENING. THAT'S SOMETHING WE HAVE ACTIVE PROGRAMS IN AT THE NIMH TO RESEARCH EFFECTIVENESS OF SCREENING. WE ARE TRYING TO SEE IF IT WORKS IN MINORITY POPULATIONS WHICH ADDRESS OTHER COMMENTS WE MADE OR FIGURE WHETHER IT WAS SCREENED IN RESPONSE TO TRATMENT LIKE THOSE IDENTIFIED WITH OTHER MEANS. ANOTHER COMMENT WAS ABOUT -- I'LL LET OTHERS -- >> WHAT ABOUT THE BRAIN DIFFERENCES THAT HE ASKED ABOUT? HE ASKED DAVID'S BRAIN NET RESEARCH. DAVID OR LEWIS COMMENT ON THE BRAIN BANK? >> LET ME LET DAVID COMMENT ON THE BRAIN BANK. I THINK THAT DR. INYATI SHOULD REALIZE THE ONLY WAY WE CAN DO THE SOMATIC MUTATIONS STUDIES ARE POSTMORTEM. I MEAN, AS OPPOSED TO CANCER -- >> IN CANCER YOU TAKE TISSUE OUT AND DO DEEP SEQUENCING WHICH YOU NEED TO DETECT SOMATIC MUTATIONS. >> I WOULD POINT OUT THE SOMATIC MUTATION WORK BEING DONE IS FUNDED BY NIMH. >> I UNDERSTAND THAT. BUT MAIN THING, IT'S NOT SOMETHING THAT COULD BE USED ETHICALLY TO UNDERSTAND THE BRAIN OF A LIVING PERSON. >> I WANT TO THANK HIM FOR HIS ENDORSEMENT OF AUTISM BRAIN NET AND SIMONS FOUNDATION FOR FUNDING IT AND ACTUALLY THE AUTISM SCIENCE FOUNDATION, FOR DOING OUTREACH EFFORTS BEING DONE. AND I WOULD ENCOURAGE PEOPLE WHO ARE LISTENING, IF THEY WANT TO TAKE A POSITIVE ACTION, GO TO THE IT TAKES BRAINS WEBSITE AND SIGN P U FOR MORE INFORMATION. WE WOULD LIKE EVERYBODY REASONING TO BE AMBASSADORS FOR US TO SPREAD THE WORD THAT WE DO TO UNDERSTAND SOMATIC MUTATIONS WE DO NEED DONATIONS OF POSTMORTEM BRAIN MATERIAL. BECAUSE OF HETEROGENEITY OF AUTISM WE NEED LARGE NUMBERS. THE ONLY WAY WE CAN DO THIS IS WITH THE HELP OF THE IMMUNITY. >> -- COMMUNITY. >> IF YOU'RE NOT A FAN OF SOMATIC MUTATION THERE'S OTHER STUFF WE NEED TO DO WITH THE BRAINS. >> IF YOU ARE FAN OF SOMATIC MUTATION WORK, ALL OF THE GENETICS WORK YOU CITED AS BEING EXTRAVAGANT WAS NECESSARY TO SUPPORT GOING INTO THAT AREA. AS ONE OF THE PEOPLE INVOLVED ENOUGH STUDY, THAT THE EXISTENCE OF THAT -- THE ONLY THING THAT ALLOWED US TO DO THAT WORK. SO IT'S NOT YOU CAN NECESSARILY SEPARATE OUT DIFFERENT ASPECTS OF THE SCIENCE. SOME NECESSARILY DEPEND ON EXISTENCE OF OTHERS. >> I HAD TWO OTHER THINGS WHEN I REALIZE WE WANTED TO POINT OUT DR. VARSU COMMENTED ON STUDYINGTRY OWES, THAT'S SPONSORED BY SIMONS FOUNDATION AND OTHER EFFORTS. WE RECRUIT AND STUDY AND HAVE BEEN INCREDIBLY VALUE IN TERMS OF TRYING TO UNDERSTAND WHAT THE GENESIS OF AUTISM FROM MULTIPLE PERSPECTIVES. AND ANOTHER COMMENT WAS ON THE VACCINES AND AUTISM AND THE NEED TO FOLLOW THROUGH ON RESEARCH PROTOCOLS. IN FACT, THIS GROUP DID RECOMMEND IT, WE DID FOLLOW THROUGH, THERE'S ENUMERABLE STUDIES THAT MADE EXACT COMPARISON REQUESTED DURING PUBLIC COMMENT PERIOD COMPARING THOSE WHO RECEIVE VACCINES VERSUS THOSE WHO DID NOT AND THERE'S EQUIVOCAL -- UNEQUIVOCAL EVIDENCE THERE'S NO INCREASE IN RISK THOSE WHO DID RECEIVE VACCINES COMPARED TO THOSE WHO DID NOT SO THAT IS SOMETHING WE ACTUALLY FOLLOWED THROUGH ON OVER THE YEARS. AND HAVE GOTTEN POWERFUL SCIENTIFIC CONSENSUS ON. THERE'S OTHER EXAMPLES OF THAT THAT WERE MENTIONED THOSE ARE THE TWO THINGS THAT POP INTO MY HEAD. OTHER RESPONSES THAT THE COMMITTEE WOULD LIKE TO MAKE WITH REGARD TO ANY OF THE OTHER PUBLIC COMMENTS? IF I THINK YOU'RE RIGHT. WE SHOULD ENGAGE IN -- OTHERS WE CAN'T COMMENT BECAUSE WE DON'T HAVE THE KNOWLEDGE. >> COULD WE -- (OFF MIC) >> DO WE HAVE THEM NOW? >> I DON'T HAVE ANY SPECIFIC AREA FOR VACCINE ISSUES. >> WE WILL LOOK INTO DOING SO. >> I THINK IT WAS -- SORRY. >> I WAS SHIFTING TOPIC TO THE WONDERFUL PRESENTATION THAT BOTH OF YOU MADE AROUND THE ISSUES OF URBAN COMMUNITIES DISPARITIES AND ACCESS TO SERVICES AND SAFETY ISSUES. I DO -- I APPRECIATE THOSE BEING BROUGHT UP BECAUSE THEY NEED TO STAY FRONT AND CENTER AND I FEEL WE TRIED TO WEAVE THOSE INTO THE STRATEGIC PLAN AS HIGH PRIORITY AREAS AND THEY HAVE BEEN DISCUSSED AS KEY OBJECTIVES. >> I WOULD AGREE WITH COMMENTERS ACTUALLY THAT THE RESEARCH IS UNDERRESOURCED IN THOSE AREAS AND PERFECT EXAMPLE OF THAT WAS THE WONDERFUL WORK DR. BRODKIN TALKED ABOUT WHERE HE ADMITTED UP FRONT DESPITE DESIRE TO RECRUIT MORE MINORITY POPULATION SPECIFICALLY AFRICAN AMERICAN POPULATION IN PHILADELPHIA, THEY HAVE BEEN SO FAR UNABLE TO DO SO WHICH MEANS WE MUST REDOUBLE OUR EFFORTS IN THAT REGARD. >> FROM WE MIGHT CONSIDER WHETHER WE WANT TO THINK ABOUT MORE STRATEGIES AS WE PUT -- FINALIZE THE STRATEGIC PLAN. TO INCORPORATE THAT INTO -- WEAVE INTO THE ENTIRE RESEARCH ENDEAVOR. >> I THINK PARTICIPATORY RESEARCH DESIGN IS GOING TO BE A BIG PART OF THAT. REGARDLESS OF WHAT COMMUNITY YOU ARE TRYING TO RECRUIT, IF YOU DON'T INCLUDE THEM AT THE BEGINNING OF YOUR RESEARCH PLAN AND YOU DESIGN YOUR ENTIRE RESEARCH PLAN, YOU HAVE THIS IDEA AND THEN YOU'RE LIKE OKAY, CAN I FIND SOME AFRICAN AMERICAN PEOPLE WHO WANT TO JOIN THE STUDY. YOU WILL HAVE A MUCH HARDER TIME THAN IF YOU INCLUDE AFRICAN AMERICAN COMMUNITY EVEN AT THE LEVEL OF DECIDING WHAT QUESTION YOU WANT TO ANSWER. BECAUSE AS THE PUBLIC COMMENTERS POINTED OUT, EVEN JUST DOWN TO WHAT PROBLEMS ARE SALIENT, WHAT PRIORITIES PEOPLE HAVE, THOSE CHANGE BASED ON MEMBERSHIP. >> >> THANK YOU VERY MUCH. >> I WANT TO HIGHLIGHT TWO SPEAKERS BROUGHT UP THE ISSUE OF ANOTHER HEALTH DISPARITY WHICH IS THE DIFFERENCE IN DIAGNOSIS, TIMING AND FOR GIRLS VERSUS BOYS WITH AUTISM AND EMERGING EVIDENCE, TALKING ABOUT DIFFERENT MECHANISMS DIFFERENT GENETIC MECHANISMS AND IF WE ARE GOING TO DO SCREENING WE HAVE TO SCREEN BIOMARKERS THAT ARE APPLICABLE AND RELIABLE FOR THE TWO GROUPS. >> THAT IS A VERY IMPORTANT COMMENT. AN LEADS RIGHT INTO THE NEXT TOPIC OF BIOMARKERS. SO THANK YOU VERY MUCH FOR THE COMMENTS ON THE PUBLIC COMMENTS AND I THINK, JOHN, I APPRECIATE YOU POINTING US IN THE DIRECTION OF RESPONDING AND ENGAGING WITH THE COMMENTS BECAUSE WHERE WE CAN PROVIDE INFORMATION GREAT AND WHERE WE CAN ACKNOWLEDGE GAPS I THINK THAT'S EQUALLY IMPORTANT. >> THANKS FOR DOING SO. I CAN SEE IT'S IMPORTANT TO THE COMMUNITY AND I SEE THAT THERE'S A LOT OF LOSS OF CONVERSATION IN OUR PUBLIC HEALTH SERVICE. AND WE NEED TO BUILD THAT UP THROUGH OUR ACTIONS AS BEST WE CAN. >> ONE MORE THING, ONE OF THE STATISTICS I DO NOT KNOW IF IT'S RELIABLE THAT ONE OF THE PUBLIC COMMENTERS GAVE WAS PERCENTAGE OF INDIVIDUALS WHO BELIEVE LINK OF VACCINES AN AUTISM. THAT SHOWS -- I BELIEVE THAT IT'S HIGH. 42% NUMBER CITED IN OPEN COMMENTS. IF THAT'S NOT ACCURATE, SOME DIFFERENT NUMBER IT'S DISTURBING AND IMPORTANT THAT WE ENGAGE ON THESE TOPIC. SO THANK YOU VERY MUCH. WE'LL MOVE ALONG INTO OUR NEXT SEGMENT WHICH IS ACTUALLY A PANEL DISCUSSION OF ADVANCES IN AUTISM BIOMARKERS RESEARCH. THIS PANEL IS PARTICULARLY TIMELY, THERE HAVE BEEN A NUMBER OF ADVANCES SEVERAL WHICH OR AT LEAST A FEW OF WHICH ARE PROPOSED. FOR NEXT YEAR SUMMARY OF ADVANCES SO WE HAVE SEVERAL OF THE AUTHORS OF THESE STUDIES AN RESEARCHERS TO TELL US ABOUT THESE ADVANTAGES. WE ASK EACH TO PREPARE A SHORT TALK, i15 MINUTES THERE'S FOUR. THAT WILL TAKE THE FIRST HOUR, THEN WE'LL HAVE A HALF HOUR TO DISCUSS WITH THEM IN AN INTERACTIVE WAY THEIR WORK AND ITS IMPLICATIONS SO PLEASE ASK DR. JAMES MCPARTLAND TO COME TO THE PODIUM. HE'S COMING TO US FROM YALE DEVELOPMENTAL DISABLES CLINIC WHERE -- DISABILITIES CLINIC, YALE PROFESSOR CHILD PSYCHOLOGY AND PSYCHIATRY AND PRINCIPAL INVESTIGATOR AUTISM BUY MARKERS AND CONSORTIUM FOR CLINICAL TRIALS, TALKING ABOUT BIOMARKER DEVELOPMENT FOR AUTISM SPECTRUM DISORDER. >> GREAT TO HAVE A CHANCE TO SPEAK WITH YOU. SUSAN CANNED ME TO GIVE A BIG PICTURE OVERVIEW WHERE THINGS STAND. I WANT TO TALK SPECIFICALLY ABOUT ABOUT CONSIDERATIONS. THIS IS THE BROAD ARRAY OF THINGS TO DISCUSS, WHAT ARE WE TALKING ABOUT WHEN WE TALK BIOMARKERS, WHY ARE THEY IMPORTANT POTENTIALLY USEFUL IN AUTISM, WHAT ARE THE CHALLENGES SPECIFIC TO AUTISM, WHERE WE HAVE COME AND WHAT ARE SOME ISSUES WITH PROGRESS SO FAR AND SOME AREAS THAT I THINK ARE KEY FOR MOVING FORWARD. SPECIFICALLY BETTER STUDIES, BETTER BIOMARKERS AND PRACTICALITIES AS WELL. THIS IS DEFINITION OF BIOMARKER THAT IS BY-PRODUCT OF WORKING GROUP PUT TOGETHER HERE AT NIH. ANY CHARACTERISTIC THAT IS OBJECT TVLY MEASURED AND EVALUATED INDICATOR OF NORMAL BIOLOGICAL PROCESS, PATHOGENIC PROCESS OR THERAPEUTIC INTERVENTION FROM THIS DEFINITION OF BIOMARKER IS DEFINED IN A BROADWAY. SO THE THINK ABOUT BIOMARKER IT DOESEN HAVE TO BE SOMETHING THAT IS IN A GENE, IT DOESN'T HAVE TO BE SOMETHING THAT IS IN THE BRAIN. IT CAN BE BEHAVIOR BUT WHAT IT CAN'T BE IS SOMETHING MEASURED IN THE SUBJECTIVE WAY. I SHOULD SAY, I'M HERE TODAY, I FULFILL TWO ROLES IN AUTISM. I'M A CLINICIAN AND I RUN DEVELOP MENTAL DISABILITIES CLINIC AND I'M ALSO A SCIENTIST AND I RUN A LAB COGNITIVE NEUROSCIENCE RESEARCH. SO AS A CLINICIAN, WE ARE QUANTIFYING SOCIAL BEHAVIOR ALL THE TIME BUT THAT'S NOT A BIOMARKER. BUT WE CAN USE BEHAVIOR IN BIOMARKER WAYS AN BOB WILL TALK ABOUT THAT LATER TODAY. I WANT TO HIGHLIGHT WHERE WE STAND WITH BIOMARKER DEVELOPMENT IN AUTISM BECAUSE AS A NEUROSCIENTIST, I HAVE A TON OF TOOLS I CAN USE IN MY LAB AND IN CLINIC I CAN USE ONE TOOL, THE SAME TOOL USED IN 1943, MY CLINICAL EYE AND JUDGMENT SO WE HAVE MADE TREMENDOUS PROGRESS IN UNDERSTANDING THE BIOLOGY OF AUTISM BUT WE ARE NOT YET AT PLACE WHERE WE CAN PUT THESE KINDS OF DISCOVERIES INTO PRACTICE, EITHER IN T CLINIC OR CLINICAL TRIALS. WHY DO I THINK THAT THAT'S IMPORTANT? WHY IS MY CLINICAL EYE GOOD ENOUGH? THERE'S THING I CAN'T DO, BIOMARKERS CAN DO BETTER. HOLY GRAIL IS TO FIND DIAGNOSTIC BIOMARKERS THAT TELLS US AUTISM IS HAPPENING BEFORE WE SEE IT IN BEHAVIOR. AND THAT'S LESS WHAT I WANT TO THINK ABOUT TODAY. I WANT TO THINK MORE ABOUT BIOMARKERS THAT MIGHT HELP US UNDERSTAND WHAT TO DO WHEN WE IDENTIFIED AUTISM. SO WE CAN THINK OF THESE STRATIFICATION BIOMARKERS THAT HAVE A SUBGROUP. INTO GROUPS MORE LIKELY TO BENEFIT FROM PARTICULAR TREATMENT LET US HELP DETERMINE PROGNOSIS. WE CAN ALSO THINK ABOUT BIOMARKERS THAT MIGHT LET US HELP ESTIMATE TREATMENT RESPONSE OR EARLY EFFICACY BIOMARKERS. RIGHT NOW, SAME THING. WHEN WE WANT TO SEE WHETHER A TREATMENT IS WORKING WE RELY ON CLINICAL JUDGMENT SAND PARENT QUESTIONNAIRES. AND MAKE SOUND DECISIONS WHETHER TO CONTINUE TO INVEST IN SPECIFIC TREATMENT OR HAVE FAMILY SAVE ENERGY AND TRY SOMETHING DIFFERENT. EVERYBODY KNOWS THIS, HOW WE DEFINE AUTISM IN TWO AREAS AND DEFINED BEHAVIORALLY, THERE ARE A FEW THINGS ABOUT AUTISM THAT REALLY MAKE BIOMARKER DEVELOPMENT IN THIS FIELD EWE NO CONTESTLY CHALLENGING. SO ONE OF THEM IS DEVELOPMENTAL CHANGE SO AUTISM IS A DISORDER SO WHEN WE LOCK FOR THAT WE'RE SEARCHING FOR A MOVING TARGET. WE DON'T KNOW WHETHER WE SHOULD BE LOOKING FOR THE SAME SET OF BIOMARKERS TO ADVISE US IS THREE-YEAR-OLDS AND 30-YEAR-OLDS AND BEYOND. AND WE NEED TO BE AWARE OF THAT. MAYBE WE FIND BIOMARKERS THAT WORK ACROSS THE LIFE SPAN BUT MAY NEED DIFFERENT SETS OF BIOMARKERS FOR DIFFERENT POINTS IN DEVELOPMENT. AUTISM ISN'T ONE THING. SO AUTISM HAS MANY, MANY DIFFERENT CAUSES, MANY ETIOLOGIES. THAT'S REALLY IMPORTANT WHEN WE LOOK FOR BIOMARKERS. IF AUTISM IS MANY THINGS, SHOULD WE EXPECT A BIOMARKER TO ENCAPSULATE THEM? MAYBE NOT, MAYBE WE DON'T NEED TO. BECAUSE WE DON'T MAKE CLINICAL DECISIONS AT THE LEVEL OF AUTISM. WE MAKE THEM BASED ON TROUGHING NO AUDIO (HETEROGENEITY ONE PERSON WITH AUTISM, YOU HAVE SEEN ONE PERSON WITH AUTISM BUT THAT'S A TRUISM FOR ALL LIVING THINGS. I THINK WHAT'S REMARKABLE IS WE CAN SAY I CAN'T TELL YOU THE IQ OF A PERSON WITH AUTISM, I CAN'T TELL YOU WHAT THEIR LANGUAGE IS LIKE BUT I CAN TELL YOU THAT DEFINITIONALLY THEY HAVE CHALLENGES AND BASIC SOCIAL INTERACTIONS, THING MOST PICK UP SO THAT IN THE FACE OF HETEROGENEITY IS BEHOOVES US TO LOK IN THAT AREA OF HOMOGENEITY FOR SOME OF OUR ANSWERS AND WE SHOULD LOOK FOR BIOMARKERS THAT ADDRESS SOCIAL COMMUNICATION. SO THERE ARE -- TRYING TO THINK ABOUT WHERE WHERE WE STAND WITH BIOMARKERS, THAT'S NO -- I COULDN'T FIND OBJECT TV WAY TO NARROW DOWN OTHER THAN WHAT I KNOW BEST. THERE IS A POSITIVE BIOMARKER STUDY FOR EVERY SYMPTOM THAT WE CAN THINK OF FOR AUTISM. SO ONE I'M MOST FAMILIAR WITH, AND DR. SCHULTZ WROTE ABOUT THIS USING IN 2000, THE WORK THAT I HAVE DONE SINCE I WAS A GRADUATE STUDENT WITH JERRY DAWSON IS LOOK AT THIS PHYSIOLOGICAL BRAIN RECORDING. THIS IS ONE OF THE MOST WELL STUDIED BIOMARKERS IN AUTISM AND WE HAVE MADE A LOT OF PROGRESS. WE UNDERSTAND I THINK CERTAIN KEY THINGS WE WANT A BIOMARKER FOR AUTISM TO DO. THESE ARE THINGS DEMONSTRATED FOR EXAMPLE RELATED POTENTIAL, SO WE SEE THIS IS SOMETHING THAT'S SENSITIVE TO DIAGNOSTIC STATUS, WE CAN DISCRIMINATE PEOPLE WITH AUTISM FROM PEOPLE WHO DON'T HAVE AUTISM. BASED ON THE BIOMARKER. WE SEE ASSOCIATION WITH SYMPTOMS AN REALLY IMPORTANTLY WE SEE A DISSOCIATION WITH THINGS THAT AREN'T IMPACTED SO WE THINK ABOUT AUTISM AND SAY FOR EXAMPLE INTELLECTUAL DISABILITY MANY PEOPLE WITH AUTISM EXPERIENCE, WE DON'T WANT TO BIOMARKER THAT'S TELLING US ABOUT THE COGNITIVE ABILITY IF WE DON'T THINK TREATMENT IS TARGETING THOSE COGNITIVE ABLES. WE WANT TO FIND BY MARKERS ASSOCIATED WITH OUR TREATMENT TARGETS BUT ARE NOT GENERIC MARKERS OF SOME ASPECT OF FUNCTION OR THIRD VARIABLE. THESE BIOMARKERS ARE APPLICABLE ACROSS DEVELOPMENT WE CAN SEE A SPECIFIC PRECURSOR N 170 IN 3 MONTH OLD AND SEE IN ADULTS AND DIFFERENCES WITH AUTISM ACROSS LIFE SPAN, WE SEE THAT ONE THING TO BE AWARE OF WHEN WE MEASURE BIOMARKERS DEPENDING, IF I'M DRAWING BLOOD IT DOESN'T MATTER WHAT THE CHILD IS DOING WHEN I DRAW THAT BLOOD BUT IF I 'EM LOOK AT FUNCTIONAL BRAIN ACTIVITY HOW A CHILD IS BEHAVING DURING THAT BIOMARKER ASSAY IS CRITICAL. SO WE WANT TO FIND BIOMARKERS THAT ARE TRUE IRRESPECTIVE OF THE BEHAVIORAL CONTEXT AND THIS IS TRUE HERE AS WELL. AND LASTLY, THIS IS MORE LINE OF RESEARCH WE WANT BIOMARKERS THAT CHANGE AS CHILDREN CHANGE, AS THEY GET BETTER IN TREATMENT. WE HAVE SEEN WORK DONE SOME OF THESE RELATE BIOMARKERS CHANGE ADS CHILDREN GET BETTER IN COURSE OF BEHAVIORAL TREAT. SO GREAT, ALL THESE OUTSTANDING BIOMARKER CHARACTERISTICS, WHY AREN'T WE ABLE TO USE THEM EFFECTIVELY IN CLINICS AND CLINICAL TRIALS YET? WELL, THERE ARE MANY SHORTCOMINGS BUT THE KEY ONE IS REPRODUCIBILITY. SO SINCE WE HAVE -- THOSE FIRST STUDIES THAT I CITED THERE HAVE BEEN FOR ERP ALONE, 25 TO 30 STUDIES LOOKING AT THEM AND THE MAJORITY OF THEM FIND DIFFERENCES, WE HAVE A META ANALYSIS WE'LL SUBMIT THIS COMING WEEK THAT SHOWS THAT BY AND LARGE IT'S TRUE PEOPLE WITH AUTISM HAVE IT REALLY DIFFERENT N 170 BUT NOT TRUE IN EVERY STUDY, WE DON'T KNOW WHY. I THINK THE BEST REASON WHY THE BEST FOR US PRACTICALLY SPEAKING IS IT'S REFLECTING TRUE HETEROGENEITY. IF AUTISM ISN'T ONE THING AND NOT EVERYBODY WITH AUTISM HAS PHASE PROCESSING SYSTEMS IN THE SAME WAY WE MIGHT NOT EXPECT THIS BIOMARKER FOR EVERYONE. THAT'S REALLY USEFUL INFORMATION FOR US. BUT THERE ARE MORE PERNICIOUS ISSUES TOO IN THE VERGE SMALL STUDIES THAT ARE UNDERPOWERED T TO DETECT DIFFERENCES THERE'S TREMENDOUS METHODOLOGICAL VARIABILITY TO SAY YOU'RE GOING TO LOOK AT A BRAIN RESPONSE TO FACE, THERE'S A LOT OF WAYS TO DO THAT, WHAT KINDS OF FACES, WHAT EXPERIMENTAL PARADIGM. WHAT RECORDING EQUIPMENT YOU USE TO CAPTURE THE EEG ELECTRODES USE SELECT TO ANALYZE. THERE IS NO WAY THE PARSE OUT THE NOISE FROM DATA THAT EXISTS SO FAR. WHEN WE WANT TO DO SOMETHING LIKE USE A BIOMARKER TO CHARACTERIZE CHANGE IN THE COURSE OF TREATMEN WE WANT TO UNDERSTAND HOW THAT BIOMARKER CHANGES IN THAT EXPANSIVE TIME OUTSIDE THE CONTEXT OF THAT TREATMENT. I WANT TO SEE HOW A PERSON'S PROCESSING CHANGES I WANT TO KNOW WHAT HAPPENS IN 16 WEEKS OF CHILD DEVELOPMENT PERIOD. AND WE DON'T HAVE THAT FRAME OF REFERENCE WE DON'T HAVE THE GROWTH CHARTS, IF YOU WILL. I WANT TO TUCK ABOUT A FEW THINGS THAT CAN SOLVE THESE PROBLEMS SO ONE THING IS REALLY STRAIGHT FORWARD. AMBITIOUS BUT STRAIGHT FORWARD TO BUILD STUDIES THAT ADDRESS WEAKENS SO WHAT'S NOISE, WHAT'S HETEROGENEITY IN THE SMALL SAMPLE THAT OBSCURES BIOMARKER, BIOMARKER INFORMATION CAN BE REALLY USEFUL VARIANT IN A LARGER STUDY SO LARGER SAMPLES WE CAN UNDERSTAND SOME OF THE DIFFERENCES, THE INFLUENCE OF LANGUAGE OR COGNITIVE ABILITY. WE CAN REALLY FOCUS CAREFULLY ON CONTROLLING METHODS. SO SOMETIMES THIS COULD BE EASY, IF A SINGLE SITE STUDY WHAT WE SHOULD BE DOING IS SHARING PARADIGMS AND THE WORK WE DO NOW WE PUT PARADIGM ON THE WEB SO OTHER GROUPS CAN USE THEM. FOR MULTI-SITE STUDIES IT'S MORE CHALLENGING BUT IMPORTANT TO MAKE HOUR THE DATA IS ACQUIRED USING IDENTICAL EQUIPMENT, IDENTICAL METHODS. WE CAN BUILD IN LONGITUDINAL DESIGN. I DON'T MEAN LONGITUDINAL YEARS. I MEAN LONGITUDINAL IN WAYS THAT MAP ON TO THE TYPICAL COURSE OF A TREATMENT. EVEN THAT IS HELPFUL AND BY DOING THOSE KINDS OF STUDIES IN CONTEXT OF LARGE ENOUGH GROUP WE CAN DERIVE NORMATIVE ATLAS. ADS MANY KNOW THIS WORK IS UNDERWAY IN THE PI OF THE AUTISM BUY MARKERS CONSORTIUM FOR CLINICAL TRIALS, I WAS HERE TO TELL YOU ALL ABOUT IT IN JANUARY 2016, HAPPY TO REPORT THAT WE'RE UP AND RUNNING, WE HAVE SEEN A HUNDRED CHILDREN ENROLLED IN THE STUDY THE PAST SIX MONTHS. SO THIS IS A STUDY DESIGN FOR THIS, TO GET A BIG ENOUGH SAMPLE OF CHILDREN WITH AUTISM TO EXAMINE NOT NOVEL, THE MOST WELL STUDIED BIOMARKER TO DATE USING E,G TRACKING TO GET A SENSE OF BIOMARKER UTILITY WHILE CONTROLLING FOR THESE WEAKNESSES. SO THAT'S ONE THING WE CAN DO. ANOTHER THING WE CAN DO IS IMPROVE SENSITIVITY OF BIOMARKERS BUT I THINK ABOUT ECOLOGICAL VALIDITY. SO AS A PERSON WHO STUDIES SOCIAL NEUROSCIENCE I'M ACUTELY AWARE THAT THE WAY WE DO IT IS PROBLEMATIC BECAUSE WE STUDY HOW PEOPLE INTERACT PUTTING THEM IN SOCIAL ISOLATION, DARK SOUNDPROOF LABS OR SCANNERS AND THAT'S NOT NECESSARILY THE WAY THESE BRAIN SYSTEMS FUNCTION IN REAL LIFE AND DOESN'T RESEMBLE THE CONTEXT THAT GIVES CHILDREN PEOPLE WITH AUTISM DIFFICULTIES. SO WHAT WE CAN DO IS APPLY INTERACTIVE SOCIAL NEUROSCIENCE APPROACHES EMBEDDING BRAIN RECORDING IN REAL INTERACTIONS OR SOCIAL SIMULATIONS. THIS IS A PICTURE FROM THE BRAIN FUNCTION LAB BY JOY HERSH AT YALE, THESE ARE FUNCTIONAL INFRARED SPECTROSCOPY DEVICES, THIS IS A STUDY ONGOING TO EXAMINE BRAIN FUNCTION AUTISM IN CONTEXT OF TRUE SOCIAL INTERACTION FACE TO FACE INTERACTION. THAT BY MORE CLOSELY APPROXIMATING SOCIAL INTERACTIONINGS WE'LL GET BETTER INFORMATION ABOUT THESE BIOMARKERS. BEING PRATMATIC WE WANT TO THINK ABOUT THE PRACTICALITY OF BIOMARKERS. HOW USEFUL SOMETHING IS CLINICALLY OR IN CLINICAL TRIALS. I THINK THAT A CEILING WILL BE SET BY COUPLE OF FACTORS ONE IS CERTAINLY COST, IF WE HAVE A BIOMARKER THAT'S USEFUL BUT EXPENSIVE THE PUBLIC HEALTH IMPACT IS LIMITED. ALSO ACCESSIBILITY. SO IF I HAVE A BIOMARKER THAT WE CAN ONLY RUN OUT OF A HANDFUL OF LABS, IT WILL BE REALLY HARD TO DO CLINICAL TRIALS. AND REALLY HARD TO MAKE ANY CLINICAL IMPACT. SO WE NEED THE CONSIDER THOSE AND TECHNOLOGY IS AT HAND, EEG FOR EXAMPLE, THIS IS A BIOMARKER ACQUISITION METHOD WAY OF ACQUIRING BRAIN DATA THAT COSTS DOLLARS TO ACQUIRE EG SALT WATER AND LATEX GLOVES AND ACCESSIBLE, THERE IS AN EEG SYSTEM IN EVERY HOSPITAL IN THIS COUNTRY, THEY'RE ALREADY USED THE POPULATION LEVEL FOR SCREENING FOR SEIZURE, HEARING AND SO I THINK THAT THE SOME ANSWERS ARE AT HAND, WE HAVE WORK TO DO AS WELL. SO I WILL END BY THANKING COLLABORATORS AROUND THE COUNTRY AND ELSEWHERE AND MOSTLY FAMILIES AN KIDS INVOLVED IN THE STUDY AND PEOPLE IN MY LAB WHO DO THIS WORK. THAT IS AN N 170 TATTOO. [APPLAUSE] >> THANK YOU, DR. MCPARTLAND. WE'LL HAVE THE OPPORTUNITY FOR QUESTIONS AN COMMENTS ON THE TALKS AT THE END SO WE'LL MOVE TO DR. HEATHER HAZLETT, SENT PROFESSOR PSYCHIATRY AT CAROLINA INSTITUTE FOR DEVELOPMENTAL DISABILITIES UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE TALKING DIFFERENCES IN EARLY BRAIN DEVELOPMENT AND ASD OUTCOMES IN HIGH RISK INFANTS. >> THANK YOU FOR HAVING ME, THANK YOU FOR INVITING ME TO COME TODAY. LY SPEAK ABOUT A GROUP OF WORK AND JUST OFF THE BAT WANT TO SAY NO FINANCIAL INTERESTS BUT I HAVE A LOT OF FUNDERS IN T AUDIENCE SO WOULD LIKE TO APPRECIATE ALL THE FUNDING WE HAVE RECEIVED BY NIH AND SIMONS FOUNDATION AUTISM SPEAKS. SO THE QUESTION WRESTLED IS WHY WE STUDY EARLY DEVELOPMENT AUTISM AND BRAIN DEVELOPMENT. THIS QUESTION STARTED AT THE INITIAL INVESTIGATION OF AUTISM BY O'CONNER IN 1943 AND OBSERVATION CHILDREN HAD LARGE HEADS. SO PEOPLE LOOK AT HEAD CIRCUMFERENCE AS INDIRECT MEASUREMENT OF BRAIN. WHAT WE KNOW IS STUDIES WERE DONE CONVERGING EVIDENCE SHOW INCREASE FINDING HEAD CIRCUMFERENCE IN EARLY YEARS LESS CLEAR ABOUT LATER IN LIFE BUT THAT SEEMED TO BE A JELLED TOGETHER FINDING THAT EARLY HEAD CIRCUMFERENCE WAS ENLARGED IN INDIVIDUALS WITH AUTISM. THERE'S A LOT OF METHODOLOGICAL DIFFERENCES IN THESE STUDIES. THEY WERE EITHER PROSPECTIVE OR RETROSPECTIVE, TAKEN FROM MEDICAL RECORDS, THE METHODS WERE DIFFERENT IN HOW THAT DATA WAS COLLECTED AND THERE'S A LOT OF QUALITY CONTROL DIFFERENCES BETWEEN HOW THAT DATA WAS GATHERED AND ALSO MADE A BIG DIFFERENCE IN THE NORMATIVE GROUP YOU COMPARE THE DATA TO, AN EXCELLENT STUDY SHOWING THAT THE POPULATION STANDARDS THAT USED VARIED WHAT WAS FOUND. DR. AMARAL'S GROUP HAD A NICE REVIEW OF IMAGING STUDY LOOKING AT BRAIN SIZE AND AUTISM AND HOPEFULLY FROM THIS GRAPH YOU CAN SEE A LOT OF SUPPORT FROM STUDIES SHOWING BIGGER BRAINS AND EARLY DEVELOPMENTS TAPERING OFF, AS INDIVIDUALS GET OLDER BUT IT REALLY IS IMPORTANT TO SAY THAT EARLY STUDIES ARE WHERE WE WANTED TO FOCUS SO WE DID THIS WITH TODDLERS AND WE DID A LONGITUDINAL STUDY, SEVERAL YEARS AGO LOOKING AT TODDLERS FOLLOWING FROM AGE 2 TO 4 TO 5, AND FOUND INCREASED BRAIN SIZE BUT WE DIDN'T FIND THE CHANGE, WE HOPED TO SEE THE SOMETHING HAPPENING BETWEEN 2 AND 4, BRAIN INCREASING OR ENLARGING BUT FROM THE GRAPH IT ALREADY HAPPENED. SO THAT POINTED TO EVEN YOUNGER THAN AGE 2. WE HAD COLLABORATORS AND COLLEAGUE MS. THE FIELD FINDING SIMILAR THINGS -- COLLEAGUES IN THE FIELD FROM DR. AM ROLL'S LAB FOUND IN THREE-YEAR-OLDS INCREASED SURFACE AREA NOT CORTICAL THICKNESS IN YOUNG BOYS WITH AUTISM, SO CONFIDENT COLLEAGUES AND COLLABORATORS IN THE FIELD WERE SUPPORTING THIS WORK SO WE WANTED TO FOCUS ON BIRTH TO THREE. CHILDREN ARE GROWING RAPIDLY IN THESE FIRST TWO YEARS OF LIFE AND A LOT OF BRAIN GROWTH IS ACTIVITY DEPENDENT, CHILD INTERACTING WITH THE ENVIRONMENT, THAT MAYBE SHAPING AND SCULPTING HOW THE BRAIN IS GROWING SO CRITICAL PERIODS FOR DEVELOPMENT SO EARLY YEARS OF LIFE ARE VERY IMPORTANT. WE HAVE A COLLEAGU AT UNIVERSITY OF NORTH CAROLINA, DR. JOHN GILMORE, HE'S DONE A LOT OF WORK AT TYPICAL BRAIN DEVELOPMENT AND THIS IS JUST TO GIVE YOU A PICTURE, USING MRI SCANS, THE RAPID DIFFERENCES, AND I THIS I TO THE NAKED EYE ANYONE CAN SEE FROM BIRTH OR TWO WEEKS ON THE LEFT-HAND SIDE OF THE SCREEN TO TWO YEARS, JUST HOW RAPIDLY THAT BRAIN IS GROWING. HE IS ABLE THE SHOW WITH GRAY MATTER MATURATION ACROSS FIRST YEAR OF LIFE AND YOU CAN SEE GRAY MATTER INCREASES OVER 100%, A LOT OF BRAIN GROWTH HAPPENING. IT'S STILL CONTINUING INTO THE SECOND YEAR OF LIFE, ABOUT 18% STILL INCREASING GRAY MATTER ACROSS THOSE FIRST TWO YEARS. SO I HOPE THIS IS CONVINCING YOU THAT THOSE FIRST EARLY YEARS OF BRAIN DEVELOPMENT ARE WHERE A LOT OF CHANGE IS HAPPENING, THAT IS WHAT WE WANTED TO STUDY IN AUTISM. MATTER IS ALSO INCREASING, A VERY COLORFUL PICTURE SHOWING YOU THE FIBERS HOW RAPIDLY THOSE ARE BECOMING ACROSS THE DEVELOPMENTAL SPAN. SO WE WANTED TO KNOW COULD WE DECIDE -- COULD WE DECIPHER SEE BRAIN DIFFERENCES TO DETECT AUTISM. THIS WORK IS COMING LARGELY FROM A LARGE ACE NETWORK AND WE HAVE. COLLABORATORS AND COLLEAGUES ACROSS THE UNITED STATES AND IN CANADA. THIS NETWORK IS CON GLOBAL RATION OF FOUR CLINICAL SITES, WE HAVE A SITE IN NORTH CAROLINA PHILADELPHIA CHILDREN'S HOSPITAL AND WASHINGTON UNIVERSITY ST. LOUIS AND COLLABORATORS IN CANADA THAT HELP WITH DATA COORDINATION. WITH OUR IMAGE PROCESSING IN NEW YORK, DR. GEHRIG AND COLLEAGUES AT THE UNIVERSITY OF MINNESOTA JOHNS HOPKINS. WE WERE HELPING WITH ENVIRONMENTAL AND GENETIC DATA WE'RE ALSO GATHERING. WE HAVE FRIENDS AND COLLEAGUES HELPING WITH THIS STUDY. THE IDEA FOR THE STUDY GREW OUT OF TWO IDEAS THAT DEVELOPMENT HAPPENING IN BEHAVIOR AND BRAIN SO PUBLISHED A PAPER IN 2005 FROM HIS STUDY SHOWING THERE WAS A RAPID CHANGE IN DEVELOPMENT BETWEEN 6 TO 12 MONTHS USING A SCALE CALLED AOC, AUTISTIC BEHAVIOR EMERGING DURING THIS PERIOD. WE FOUND A SIMILAR SUPPORTIVE FINDING IN HEAD CIRCUMFERENCE DATA SHOWING RAPID INCREASE BUT HAPPENING AROUND THE 12 MONTH MARK ADS WELL IN HEAD CIRCUMFERENCE IN YOUNG CHILDREN WITH AUTISM SO THESE IDEAS SUPPORTED THE STUDY. THE GOAL WAS TO FOLLOW LONGITUDINALLY AS JAMIE POINTED OUT THE LONGITUDINAL NATURE FOR UNDERSTANDING CHILD DEVELOPMENT IS VERY IMPORTANT. SO THE DESIGN WAS TO LOOK LONGITUDINALLY AND WE ALSO CHOSE TO LOOK AT INFANTS AT HIGH RISK BY THIS WE MEAN INFANTS BORN TO OLDER SIBLINGS THAT HAS AUTISM, THEY HAVE ABOUT A 20% DEPENDING ON STUDY YOU READ, INCREASED RISK FOR AUTISM THEMSELVES SO WE FOLLOW FROM THREE MONTHS TO AGE TWO OR THREE AND WE DID DEVELOPMENTAL BEHAVIORAL ASSESSMENT AS WELL AS MRI SCAN. THIS WORK WAS PUBLISHED A COUPLE OF MONTHS AGO SO I WILL SHARE THIS DATA. THEMENT BILL WAS A LARGE ONE LONGITUDINALLY AND PREDOMINANTLY MALES IN A GROUP THAT HAD AUTISM BY AGE 2. NOT MUCH DIFFERENCES IN MATERNAL AGE ORBITER WEIGHT OR GESTATIONAL AGE, AS CONTROL VARIABLES THAT WE WERE INTERESTED IN LOOKING AT BUT DIFFERENCES IN DEVELOPMENTAL FUNCTIONING WHICH IS A DEVELOPMENTAL SCORE AND ADAPTIVE BEHAVIOR. SO THOSE CHILDREN WHO END UP WITH AUTISM LOOK SIMILAR AT AGE 6 BUT ARE FUNCTIONING IN A MORE IMPAIRED RANGE BY AGE 2. SO THIS IS WHAT WE FOUND. THE RED LINE RED BAR CHILDREN INFANTS AT SIX STARTED OUT ADS EVERYONE HIGH RISK BUT TWO ENDED UP BEING CLASSIFIED OR CHARACTERIZED HAVING AUTISM. GREEN LINE WERE IN THE SAM GROUP BUT DIDN'T END WITH AUTISM AND BLUE OR TYPICALLY DEVELOPING CONTROLS. WE CAN SEE INCREASE IN BRAIN GROWTH HAPPENING IN THOSE FIRST TWO YEARS OF LIFE AND SIMILAR TO HEAD CIRCUMFERENCE, THE RATE OF CHANGE WAS INCREASED IN THE SIX TO 12 MONTHS MORE SO THAN THE SECOND YEAR. WE ALSO FOUND WAY TO MEASURE SURFACE AREA, THE OUTER CONTOUR OF THE BRAIN AS WELL AS CORTICAL THICKNESS, RIBBON OF GRAY MATTER IN THE BRAIN. SURFACE AREA HAD A VERY SIMILAR TRAJECTORY WE SAW THAT SAME INCREASE IN FIRSTIER OF LIFE SIX TO 12 MONTHS AND CHILDREN THAT ENDED WITH AUTISM. BUT NOT IN CORTICAL THICKNESS. SO WE SEE A SPECIFIC AFFECT THAT CONTRIBUTES TO THAT TOTAL BRAIN VOLUME ENLARGEMENT. WANT TO LOOK WHERE ON THE SURFACE OF THE BRAIN THESE REGIONS SHOW DIFFERENCES. WE DID SEE SOME DIFFERENCES IN THE CHILDREN THAT HAD OUTSMELT MIDDLE OCCIPITAL GYRUS, TEMPORAL GYRUS AND MIDDLE FRONTAL GYRUS WERE REGION THAT WERE DIFFERENT AND WE WANT TO LOOK AT BEHAVIORS THEY MAYBE ASSOCIATED WITH THOSE REGIONS. WE DID LOOK AT BEHAVIOR AT THE TIME AND LOOK TO SEE IF WE CAN SEE ASSOCIATION WITH THE BRAIN VOLUME ENLARGEMENT AND SEVERITY OF AUTISM AND WE DID THIS IN A COUPLE OF WAYS. TOTAL BRAIN GROWTH AND THEIR ADOS SCORE THAT WAS USED AS PART OF THEIR ASSESSMENTS AND WE DID NOT SEE RELATIONSHIP BETWEEN BRAIN VOLUME AND SCORE IN THAT SIX TO 12 MONTH RANGE TRAJECTORY BUT WE DID SEE A SIGNIFICANT RELATIONSHIP IN THAT SECOND YEAR OF LIFE, 12 TO 24 MONTHS, IT WAS A POSITIVE RELATIONSHIP MEANING THE BIGGER THE BRAIN THE MORE SEVERE SYMPTOMS ON THE SOCIAL EFFECTIVE PORTION. THE REPETITIVE BEHAVIOR DIDN'T HAVE ASSOCIATION. WE CHOSE A SEPARATE MEASURE BECAUSE IT WAS PART OF THE DATA WE USE TO HELP CLASSIFY THE CHILDREN'S SO WE WANTED AN INDEPENDENT MEASURE, ANOTHER TOOL TO SEE IF WE SAW SIMILAR THIN THING AND WE DID. SOCIAL DEFICITS RELATED TO CSBS SCORES IN THAT SECOND YEAR OF LIFE. 12 TO 24 MONTHS. WE WANTED TO KNOW, THIS IS WHY I'M INVITED HERE SURFACE AREA IS A BIOMARKER. COULD IT PREDICT. AND WE HAVE THE HELP OF COLLEAGUES THAT ARE COMPUTER SCIENTISTS AND ASSISTED WITH MACHINE LEARNING ALGORITHM, I WON'T GO INTO DETAIL BUT THEY DID A VARIETY OF WAYS TO MAKE SURE PRETTY CONFIDENT HOW THEY DID. THEY ONLY INCLUDED SIX TO 12 MONTH DATA. THEY ONLY INCLUDED CORTICAL THICKNESS SURFACE AREA, TOTAL BRAIN VOLUME AND SECTION OF THE CHILD AND THEY WERE ABLE TO TRAIN THE ALGORITHM ON A PORTION OF THE DATA SET AND TEST IT ON REMAINING PORTION. WE FOUND USING THESE SIMPLE FEATURES, THE BRAIN VOLUME SURFACE AREA SEX AND CORTICAL THICKNESS WE FOUND THAT SURFACE AREA PREDICTED 80% ACCURACY THOSE CHILDREN WHO END UP WITH AUTISM AND JUST TO REITERATE BECAUSE MAYBE THIS IS NOT A STATISTIC THAT A LOT OF PEOPLE ARE FAMILIAR WITH BUT HOW CONFIDENT ARE WE DATA 6 TO 1 MONTHS ACCURATELY CHILDREN WHO END UP IN THAT 12 MONTH CATEGORY A. WE WERE ENCOURAGED USING BEHAVIOR ONLY TOOLS, A MEASURE FOR EXAMPLE LOOKING AT 12 MONTH OLDS, USING A PARENT SCREENER, SAME STATISTIC WAS .14 SO WE WERE DOING A LITTLE BETTER THAN BEHAVIORAL INSTRUMENTS THAT AVAILABLE AND EVEN BETTER THAN ANOTHER MEASURE USED A LITTLE OLDER, 18 MONTHS BY RESEARCH CONSORTIUM, THAT WAS 50%. SO EARLY SURFACE AREA, EXPANSION IN FIRST YEAR OF LIFE MAYBE RESPONSIBLE OR CONTRIBUTE TO THE BRAIN OVERGROWTH WE SEE IN THE SECOND YEAR OF LIFE. AND BOTH OF THESE THINGS ARE PROCEEDING BUT CONTRIBUTING TO BEHAVIORAL FEATURES THAT ARE EMERGENING THAT SECOND YEAR. WE ARE EXCITED BECAUSE WE ARE ABLE TO CAPTURE WE THINK AT A TIME BEFORE BEHAVIORS ARE PRESENT, A BRAIN DIFFERENCE THAT COULD BE USED TO PREDICT THOSE CHILDREN WHO GO ON TO EXHIBIT AUTISM. WE ALSO THINK THAT THIS INFORMATION IS SHOWING A CLUE TO THE MECHANISM, UNDERLYING MECHANISM, HERE IS A NICE PAPER BY ALAN PA CART, A REVIEW OF ALL GENETIC WORKS DONE TO SUPPORT THE IDEA NUMBER OF AUTISM RISK GENES THAT HAVE A STRONG ROLE IN NEURODEVELOPMENT AND THEY CONTRIBUTE AND PLAY A ROLE IN DIFFERENT STAGES OF DEVELOPMENT. AND THESE GENES ARE GENETICISTS SO PRODUCTION OF NEURONS OR PERHAPS OTHER MECHANISMS SUCH AS TRIMMING NEUROPENETRATION IS ALSO GENETIC PICTURE SO WE WERE ENCOURAGED BY THIS NICE REVIEW. WE ALSO WONDERED WHETHER WAS THERE OTHER EVIDENCE FROM OUR DATA FROM THIS NETWORK FOR EARLY BRAIN -- PIECES OUTCOMES. THIS WORK WAS DONE BY JASON WOLF WHO TOOK THE WHITE MATTER INFORMATION WE HAVE FROM OUR BRAIN DATA, SO HE LOOKED AT NEURAL CIRCUITRY AT SIX MONTHS USING DTI SCANS AND SELECTED KEY TRACKS OF THE WHITE MATTER YOU CAN SEE PRESENTED ON THE LEFT AND LOOKED AT JUST THE HIGH RISK INDIVIDUALS, INFANTS TO SEE EARLY RELATIONSHIP WHITE MATTER MORPHOLOGY AND BEHAVIOR AT 24 MONTHS. HE FOUND ASSOCIATION BETWEEN THESE WHITE MATTER TRACKS AND SIX MONTH AND REPETITIVE BEHAVIOR NOT THE SOCIAL BEHAVIOR SO THERE OOH'S DIFFERENCE THAT THE BRAIN VOLUME IS ASSOCIATED WITH THE SOCIAL BEHAVIORS THE WHITE MATTER IS ASSOCIATED WITH SOME OF THESE REPETITIVE BEHAVIORS. AND SENSORY BEHAVIORS. WE HAVE A POST-DOC TAKING THIS OTHER BRAIN INFORMATION THAT WE HAVE, WE DO RESTING STATE CONNECTIVITY SCANS, SO WHILE INFANTS ARE SLEEPING, AND IS LOOKING HE'S WORKING ON THIS NOW TO PREDICT SEE WHETHER THIS FUNCTIONAL NETWORK DATA CAN PREDICT THOSE CHILDREN WHO END UP WITH AUTISM. AND THE GOAL OF ALL OF THIS, IS TO PROVIDE A RICH PICTURE, WANT TO EXPLORE BRAIN AND BEHAVIORAL RELATIONSHIPS TO SEE THE INFLUENCE ACROSS DEVELOPMENT AND ALSO LIKE TO COMBINE DTI DATA, BEHAVIORAL DATA WITH EACH OTHER SO THAT WE CAN HAVE EVEN STRONGER INFORMATION. AND OUR INTEREST IN INDIVIDUAL PROFILES THESE ARE GROUP BASED STATISTICS I'M SHOWING YOU BUT WE ALSO KNOW ALL CHILDREN ARE INDIVIDUALS SO WHAT THINGS CONTRIBUTE TO INDIVIDUAL PROFILE AS THEY'RE DEVELOPING. AND INCORPORATE GENETIC AND ENVIRONMENTAL RISK DATA. WHICH ARE LUCKY TO COLLECT AS WELL IN THE SAMPLE. SO I'M GOING TO STOP HERE AND SAY THANK YOU TO OUR VERY LARGE GROUP OF COLLABORATORS, THE NETWORK IN, MANY PEOPLE ARE HERE BUT NOT ALL. AGAIN ACKNOWLEDGE OUR FUNDING SUPPORT. AND OUR THANKS TO OUR FAMILIES. WE ASK THESE FAMILIES TO DO A LOT FOR US, THEY TRAVEL NOT JUST ONCE BUT THREE OR FOUR TIMES TO OUR SITES AND THEY ARE PATIENT WITH US AND FULLY APPRECIATE THEM AND HELP US DO THIS WORK. SO WE COULDN'T DO IT WITHOUT THEM. THANK YOU. [APPLAUSE] >> THANK YOU, DR. HAZLETT. NEXT UP WE HAVE MARK SHEN, DR. MARK SHEN POST-DOCTORAL FELLOW ALSO AT THE CAROLINA INSTITUTE FOR DEVELOPMENTAL DISABILITIES. AT UNIVERSITY OF NORTH CAROLINA. HE WILL TALK ABOUT EXTRA AXIAL CEREBROSPINAL FLUID AND INSIGHTS TO THE ROLE OF EARLY BEHAVIOR. >> THANKS FOR INVITING ME. I WILL TALK TO YOU TODAY ABOUT EARLY BRAIN ANOMALY THAT WE DETECTED IN INFANTS HIGH RISK INFANTS THAT GO TO DEVELOP AUTISM AND FOCUS ON THE REPLICATION STUDY THAT WE JUST PUBLISHED A COUPLE OF MONTHS AGO PIGGY BACKING ON DR. MCPARTLAND'S POINT TO VALIDATE BRAIN ANOMALIES AND BIOMARKERS REPLICATED IN LARGER SAMPLE SO I'LL TELL YOU ABOUT THAT AND ALSO SHARE WITH YOU WHAT WE'RE DOING NOW AND THAT'S TO VALIDATE THE PATHOGENIC MECHANISMS THAT WE THINK ARE DRIVING THIS BRAIN ANOMALY AND RELATIONSHIP TO BEHAVIOR. SO BACK IN 2013 WHEN I WAS A GRADUATE STUDENT IN DAVID AMARAL'S LAB AT UC DAVIS MIND INSTITUTE WE DETECTED A BRAIN ANOMALY CALLED EXCESSIVE EXTRA AXIAL FLUID. SO HERE ON THE LEFT BRIEFLY THAT IS MRI OF A TYPICALLY DEVELOPING SIX MONTH OLD INFANT. OPT RIGHT HERE COLORED IN RED, THAT'S INCREASED AMOUNT OF CEREBROSPINAL FLUID IN EXTRA AXIAL SPACE. MORE IMAGES ABOUT THAT BUT WHAT WE FOUND WAS THAT HIGH RISK INFANTS WHO LATER DEVELOP AUTISM INCREASE AMOUNT OF CEREBROSPINAL FLUID AND THAT MAKES THAT FLUID REMAIN ELEVATED THROUGH 24 MONTHS OF AGE UNTIL AGE OF DIAGNOSIS. IT WAS ASSOCIATED WITH HOW SEVERE SYMPTOMS WILL BE, TWO YEARS LATER, I ALSO PREDICT WHICH GO ON TO DEVELOP AUTISM. WHAT YOU SEE HERE IS THIS SAMPLE WAS A RELATIVELY MODEST SIZE SAMPLE AND THE FIRST STUDY PUBLISHED IN INFANTS WITH THIS BRAIN ANOMALY BUT WE DECIDED WE NEEDED TO REPLICATE IT SO WE REACHED OUT TO JOE PIVON AT UNC AND FORMED A COLLABORATION WITH THE IBIS NETWORK. THIS IS WORK NOW AT POST DOC AT UNC. SHOW YOU A LITTLE MORE WHAT THIS LOOKS LIKE, ON THE TOP PANEL, YOU HAVE INFANT WITH A QUOTE UNQUOTE NORMAL MRI SIX, 12, 24 MONTHS OF AGE AND WHAT YOU SEE IS THERE'S A THIN LAYER IN BLACK, THAT'S THE CEREBROSPINAL FLUID THAT'S SURROUNDING THE BRAIN. CONTRAST THAT WITH AN IMNAG ON THE BOTTOM, THAT'S INFANT -- IMAGE ON THE BOTTOM, INFANT WITH EXCESSIVE CEREBROSPINAL FLUID IN EXTRA AXIAL SPACE BETWEEN SURFACE OF THE BRAIN. AND SO ALL THAT IN BLACK IS CEREBROSPINAL FLUID THAT IS ENLARGED THROUGH 24 MONTHS OF AGE. WHAT WE DID FOUR THE IVIS NETWORK IS WHEN WE WERE LOOKING FOR PARTNERS FOR REPLICATION, WHAT IS IMPORTANT IS THE STUDY IS THE SAME DESIGN AS THE PREVIOUS STUDY WE PUBLISHED IN 2013. AS HEATHER MENTIONED THEY DO MRI SCANS AT 6, 12, 24 MONTHS OF AGE WITH DIAGNOSIS AT 24 MONTHS. SAME STUDY DESIGN WE DID IN 2013 AT THE MINE INSTITUTE. IMPORTANTLY BECAUSE THEY ARE FOUR CLINICAL DATA COLLECTION SITES WE WERE ABLE TO SEE A LOT MORE FAMILIES. SO IN THIS STUDY 343 INFANTS WERE INVOLVED IN THIS STUDY CONTRIBUTING TOTAL OF 804 SCANS. AND WHAT WE DID FOR THIS STUDY SINCE IT WAS A LARGE NUMBER OF FAMILIES, LARGE NUMBER OF SCANS, WE CREATED A FULLY AUTOMATED METHOD TO QUANTIFY THIS CSF. WHAT WE DID WHICH IS IMPORTANT, WE PERFORMED THIS METHOD WITH ALL OPEN SOURCE FREELY AVAILABLE AND FULLY ACCESSIBLE SOFTWARE AND IT'S ON THE NIH WEBSITE THAT YOU CAN DOWNLOAD AND THAT'S REALLY IMPORTANT BECAUSE WE ENCOURAGER LABS AROUND THE COUNTRY AND WORLD TO REPLICATE OUR FINDING. AND OUR HOPE IS ULTIMATELY THAT THIS WILL REALLY INCREASE THE GENERALIZABILITY OF THE RESULTS THAT THIS IS A METHOD THAT CAN BE SHARED WITH ANY LAB WHO IS INTERESTED IN DOING THIS. I WILL TELL YOU FINDING FROM THIS PAPER THE REPLICATION STUDY PUBLISHED IN BIOLOGICAL PSYCHIATRY. HIGH RISK INFANTS HAD INCREASED CSF BY SIX MONTHS AND REMAINED ELEVATED COMPARED TO CONTROLS THROUGH 24 MONTHS OF AGE. TO ORIENT YOU WHAT YOU SEE HERE IN RED, THAT'S THE GROUP OF HIGH RISK INFANTS THAT DEVELOPED ASD. THAT'S THE ASD GROUP AND SIX MONTHS OF AGE AS A GROUP 18% MORE FLUID COMPARED TO HIGH RISK KIDS THAT DIDN'T DEVELOP AUTISM AND LOW RISK KIDS THAT DIDN'T DEVELOP AUTISM SO THERE WERE TWO CONTROL GROUPS. 18% MORE CSF AT SIX MONTHS AND STILL 10% MORE CSF AT 24 MONTHS OF AGE. I SHOULD MENTION WE ALSO COUNTED FOR BRAIN VOLUME IN THIS SO THIS IS INCREASE OF CSF ABOVE AND BEYOND THE DIFFERENCES IN BRAIN SIZE THAT DR. HAZLETT JUST TALKED TO YOU ABOUT. SO THIS IS A NICE REPLICATION, THE MAGNITUDE OF THESE RESULTS IS ALMOST IDENTICAL TO THE STUDY WE DID AT THE MIND INSTITUTE IN 2013. AND BECAUSE IT WAS ENTIRELY INDEPENDENT SAMPLE WITH A MUCH LARGER SAMPLE, SEVEN TIMES LARGER THAN THE PREVIOUS SAMPLE, WE'RE ABLE THE LOOK AT SUBGROUPS. SO THERE WERE 47 BABIES THAT DEVELOPED AUTISM. WE WANTED TO SEE WHETHER OR NOT SUBGROUPS BASED ON SYMPTOM SEVERITY SO BACK TO AN ALGORITHM TO BREAK THE KIDS UP TO INFANTS THAT WILL AT 24 MONTHS OF AGE HAVE HIGH AUTISM SO THE MOST SERER KIDS ON THE SPECTRUM VERSUS KIDS THAT DEVELOPED AUTISM BUT MORE MILD SYMPTOM. WE FOUND PRONOUNCED INCREASE IN BABIES THAT DEVELOP SEVERE AUTISM SYMPTOMS SO YOU CAN SEE IN SOLID RED LINE HERE, 15 PERCENT MORE FLUID SIX MONTHS KIDS THAT WOULD TWO YEARS LATER DEVELOP MORE SEVERE AUTISM SYMPTOMS HAD 24% MORE FLUID AT SIX MONTHS. AND 15% MORE FLUID AT 24 MONTHS OF AGE. I SHOULD ALSO MENTION AND I THINK IT WAS DR. MCPARTLAND THAT MENTIONED SEX SPECIFIC BIOMARKERS, THERE WAS AN INTERESTING FINDING HERE IN RELATION TO SEX WHERE THE GIRLS WHO DEVELOP MORE SEVERE AUTISM SYMPTOMS HAD ACTUALLY MORE CSF THAN THEIR MALE COUNTERPARTS. IT WAS A SMALL SAMPLE OF GUILTIES BUT EXTENDING TO A LARGER SAMPLE. THE HOPE IS TO HAVE SEX SPECIFIC THRESHOLDS BECAUSE WE FOUND THE GIRLS WITH MORE AUTISM SYMPTOMS MAY HAVE A HIGHER NEUROLOGICAL THRESHOLD OF CSF TO OVERCOME TO REACH AUTISM DIAGNOSIS. THEN WE WANTED TO ASK THE QUESTION WHETHER CSF AS A SINGLE BRAIN MEASURE, AT SIX MONTHS OF AGE AT A SINGLE TIME POINT, WHETHER OR NOT IT HAS ANY SORT OF PREDICTIVE ACCURACY TO CLASSIFY KIDS TWO YEARS LATER DIAGNOSED WITH AUTISM WE DEVELOPED A MACHINE LEARNING ALGORITHM SIMILAR TO WHAT HEATHER DESCRIBED BUT INSTEAD OF COMBINATION WE USE CSF AS SINGLE BRAIN MEASURE. AND PREDICT KIDS TWO DEVELOP AUTISM AT 24 MONTHS OF AGE. THE OVERALL ACCURACY WAS 70% SENSITIVITY, 66% AND SPECIFICITY OF 68%. SO NOT YET NEAR WHAT WOULD BE CLINICALLY APPLICABLE. ONE THING WE DID IS VALIDATE THIS MEASURE IN EXTERNAL SAMPLE SO SINCE WE HAD DATA FROM THE 2013 SAMPLE AT THE MINE INSTITUTE WE TOOK THE SAME PREDICTIONS ALGORITHM TO THIS INDEPENDENT SET OF INFANTS AND REASSURINGLY THOSE INFANTS IN THAT STUDY ALSO CSF PREDICTED ABOUT THE SAME AMOUNT, 70% WENT TO DEVELOP AUTISM. PICKING UP WHAT DR. MCPARTLAND SAID WE DON'T THINK EVERY CHILD WITH AUTISM ON THE SPECTRUM HAS INCREASE CSF SO IT'S A LITTLE REASSURING THAT WE DON'T HAVE CLOSE TO 100% PREDICTIVE ANGARA SY. WE KNOW WE'RE PICKING UP 70% OF THE KIDS. WHAT'S IMPORTANT IS NOT NECESSARILY THAT WE'RE GOING TO PREDICT ALL KIDS WITH AUTISM. BUT LIKE DR. MCPARTLAND SAID PERHAPS EXTRA AXIAL CSF AT SIX MONTHS OF AGE IS A STRATIFICATION MARKER. MAYBE IT'S PRESENT IN THE MOST SEVERE KIDS WITH AUTISM. BUT AS FAR AS PRAGMATIC USE THIS IS OBSERVABLE BRAIN ANOMALY THAT CAN BE DETECTABLE EVEN WITH THE NAKED EYE WITH ANY STRUCTURAL MRI. IN FACT IT'S HOW WE WERE ALLUDED TO IT RADIOLOGISTS CAN SEE THIS WITH THE NAKED EYE AND THAT IMPROVES GENERALIZABILITY TO THE FIELD. AND ALSO THAT HAS BEEN MENTIONED REPLICATION IS WHERE? NEUROSCIENCE RESEARCH, WHERE CERTAIN AUTISM RESEARCH AND EARLY MARKERS REASSURED BY THIS FINDING. ONE NEXT STEP I WILL DISCUSS IS COMBINING THIS WITH OTHER FEATURES OF BRAIN AND BEHAVIORAL DEVELOPMENT TO PUSH THE NEEDLE PAST 70% TO THE 80, 90% RANGE MORE CLINICALLY USEFUL. SO I WILL TALK TO YOU NEXT ABOUT SOME UNPUBLISHED WORK WE'RE DOING NOW TO REALLY TRY TO UNDERSTAND WHAT ARE THE BIOLOGICAL MECHANISMS THAT'S DRIVING THIS. IS THIS JUST A PHENOMENON THAT'S NOT RELATED TO BRAIN DEVELOPMENT, AND WE THINK THE STUDIES NOW ARE SHOWING IT'S DIRECTLY AFFECTING BRAIN DEVELOPMENT. SO IN THE LAST FEW YEARS THERE HAS BEEN A RENEWED EMPHASIS ON CSF AS FILTRATION SYSTEM OF THE BRAIN. IT'S WHAT HELPS THE BRAIN CLEAN ITSELF SO THERE'S SEVERAL STUDIES HIGH IMPACT JOURNAL OVER THE LAST FEW YEARS THAT HIGHLIGHTED THIS. SO JUST BRIEFLY TALK ABOUT THIS, CEREBROSPINAL FLUID HAS TWO FUNCTIONS, IT'S CONTINUOUSLY BEING PRODUCED, IN FACT, OUR BRAIN PRODUCES ABOUT A LITER OF CSF PER DAY, AS BEING CONTINUOUSLY PRODUCED IT DELIVERING GROWTH FACTORS TO THE DEVELOPING BRAIN SO IGF 1 AND 2 ARE TWO GROWTH FACTORS THAT PRODUCE BY THE CEREBROSPINAL FLUID BATHED THE BRAIN THROUGHOUT THE BRAIN AN HELP REGULATE BRAIN DEVELOPMENT. AT THE SAME TIME, IT NEEDS TO BE CONTINUOUSLY ONSORBED. -- ABSORBED. IT'S EFFICIENT AT DOING THIS, ABOUT EVERY SIX HOURS OR FOUR TIME AS DAY YOU GET A FRESH O CSF. WHAT THE OLD CSF IS DOING IS CLEANING AND FILTERING THE BRAIN, REMOVING CYTOKINES AN AN INFLAMMATORY PROTEINS THAT OTHERWISE ACCUMULATE IN THE BRAIN. FOR EXAMPLE, AMYLOID BETA IS A PROTEIN THAT IS CONTINUOUSLY BEING SECRETED BY NEURONS AND THE FUNCTION OF THE CSF THAT CLEARS THAT AWAY FOUR TIMES PER DAY. SO THE HYPOTHESIS WE'RE WORKING UNDER IS THAT WHEN WE SEE AN INCREASED AMOUNT OF CSF OVER SURFACE OF THE BRAIN, THAT IS INDICATION IT IS NOT CIRCULATING AND NOT FILTERING IN THE BRAIN AS IT SHOULD, END RESULT IS NEUROINFLAMMATORY RESPONSE IN THE BRAIN. HOW ARE WE DOING THIS? WE WANTED TO ASK SEVERAL QUESTIONS ABOUT THESE FINDINGS THAT NOW REPLICATE BUT NOW TRYING TO TAKE IT TO THE NEXT STEP. WHAT IS SPECIFICITY FOR AUTISM? THAT'S A QUESTION WE GET OFTEN, IS IT SOMETHING PRESENT IN THE MONOGENIC FORMS OF AUTISM SPECTRUM DISORDER? OR PRESENT IN OTHER NEURODEVELOPMENTAL DISORDERS? SO I CAN TELL YOU AND THIS IS UNPUBLISHED BUT THAT WE ARE ALSO FOLLOWING INFANTS ARE FRAGILE X SYNDROME, ASSOCIATED MONOGENIC DISORDER AND THEY'RE SCANNED AT THE SAME TIME, SIX, 12, 24 MONTHS OF AGE, HEATHER HAZLETT IS PI. THOSE INFANTS AT SIX MONTHS OF AGE WITH FRAGILE X HAVE MORE FLUID, THEY HAVE 30% MORE EXTRA AXIAL FLUID SO MORE A MORE PRONOUNCED INCREASE. SO WHAT THAT IS DONE NOW IS NOW THAT WE HAVE FOUND THIS IN SINGLE GENE DISORDERS GIVES ENTRE LOOKING AT ANIMAL MODELS. SO WE'RE USING MOUSE MODELS OF THESE MONOGENIC FORMS SO THE FRAGILE X HAS A WELL VALIDATED MOUSE MODEL TO PERFORM EXPERIMENTS WE CAN'T DO IN MR. BAYHI: S SO THE PREVIOUS SLIDE I SHOWED LOOKING AT CSF CIRCULATION AND WHETHER OR NOT THAT IMPAIRS THE CLEARANCE OF NEUROINFLAMMATION, WE'RE TESTING IN ANIMAL MODELS TO SEE IF THERE'S A TRANSLATIONAL COMPONENT TO THIS. FINDING. ARE THERE GENETIC VARIANT RELATED TO EXTRA AX Y'ALL FLUID? GENEROUS SUPPORT OF AUTISM SPEAKS AND SIMON FOUNDATION WE COLLECTED DNA ON ALL INFANTS IN STUDY PARENTS AND SIBLING SO THE FAMILY QUAD. AND WE HAVE PARTNERED UP WITH COLLABORATORS AT JOHNS HOPKINS MOUNT SINAI NEW YORK TO DO WHOLE EXOME SEQUENCING AND GENOME WIDE SNP GENOTYPING AN DEVELOPING POLYGENIC RISK SCORES TO SEE WHETHER OR NOT WE CAN DETERMINE A GENETIC ASSOCIATION TO THIS. FINALLY, I MENTION THIS, WE'RE COMBINING THIS WITH OTHER ASPECTS OF BRAIN AND BEHAVIORAL DEVELOPMENT SO FOR EXAMPLE, IF WE COMBINE THE METRICS THAT DR. HAZLETT DESCRIBED IN HER STUDY OF SURFACE AREA CHARACTERISTICS WITH CEREBROSPINAL FLUID SIX MONTHS OF AGE WE CAN MOVE PREDICTIONS ACCURACY TO 85% RANGE. I ALSO WANT TO MENTION WE'RE NOT JUST FOCUSED ON THE BRAIN. WE KNOW BRAIN DOESN'T OCCUR IN A VACUUM. THE BEHAVIORAL LANGUAGE ENVIRONMENT THAT PARENTS PROVIDE THEIR CHILDREN IS REALLY IMPORTANT. THIS IS NINE MONTH OLD, THAT'S MY SON WHO TURNED NINE MONTHS TODAY. AND WHAT WE DO WITH THE BABIES IN THE IBA STUDY IS GIVE THEM A LITTLE LANGUAGE, THE (INAUDIBLE) YOU CAN SEE IT HERE ABOUT THE SIZE OF CREDIT CARD, FITS INSIDE THE POCKET. AND YOU CAN THINK AS LANGUAGE PEDOMETER SO WHEN THE FAMILIES GO HOME, IT RECORDS ALL THE LANGUAGE INPUT THEY HEAR AND LANGUAGE OUTPUT THEY EMIT AND DOES IT OVER COURSE OF SEVERAL DAYS. THIS IS WORK BY MEGHAN SWANSON WHO IS A FOLLOW POST DOC IN OUR LAB WHICH SHE REPORTED IN PAPER PUBLISHED A FEW MONTHS AGO WAS ABOUT 20% HIGH RISK INFANTS ARE HYPERVOCALIZING, VOCALIZING THAT'S TWO STANDARD DEVIATIONS ABOVE THE NORM. THEY'RE RECEIVING THE SAME AMOUNT OF INPUT SO WHAT WE'RE THINKING THAT THIS MIGHT BE IS EARLY FORM OF EARLY STEREOTYPE BEHAVIOR. AND INDEED THESE KIDS ARE HAVING LOWER SCORES ON THEIR SOCIAL BATTLING. THIS IS A CLAVE HANGER BECAUSE THESE KIDS HAVE NOT REACHED DIAGNOSIS. BUT WE THINK THAT THESE 20% OF KIDS ARE SIMILAR TO THE KIDS THAT WILL THEN GO ON FOR AN AUISM DIAGNOSIS. I WILL JUST WRAP UP HERE, WHICH IS A SUMMARY SLIDE OF BOTH WORK DONE IN IBIS WITH DR. HAZLETT AND COLLABORATORS WITH DR. AMARAL AROUND THE COUNTRY LOOKING FOR A MULTI-DIMENSIONAL APPROACH TO EARLY MARKERS OF AUTISM. SO WITH TOE -- HOW TO DESCRIBE SURFACE AREA, INCREASE CSF, POSSIBLY LEAD OF A QUARTER WHICH IS MUCH MORE SCALABLE, MRI AND NOW WE HAVE MOLECULAR GENETICS, WE'RE LOOKING TOWARDS TWO GOALS, ONE IS IMPROVED PREDICTIONS IN INFANCY AND TWO WE CAN DEVELOP BETTER TREATMENTS AND MOVE TOWARDS PERSONALIZED MEDICINE. WE KNOW ALL KIDS WITH AUTISM AREN'T GOING TO SHOW ALL OF THESE DIFFERENT ATTRIBUTES BUT WE HOPE THAT IN COMBINATION WE CAN REALLY MOVE TOWARDS BETTER TREATMENTS THAT WILL BE MORE PERSONALIZED AND MOVE TOWARDS A MORE PRECISION MEDICINE APPROACH. SO WITH THAT I WANTED TO THANK THE MANY COLLABORATORS THAT WE HAVE AROUND THE COUNTRY IN PARTICULAR JOE PIVT AND DAVID AMARAL WHO LED THESE STUDIES. THANKS. [APPLAUSE] >> THANK YOU, DR. SHEN. FINALLY FOR THE FINAL TALK OF THE PANEL, WE HAVE DR. ROBERT SCHULTZ, RAC PROFESSOR DEPARTMENT PROFESSOR OF PSYCHOLOGY, DEPARTMENTS OF PEDIATRICIAN AND PSYCHIATRY AND DIRECTOR OF CENTER FOR AUTISM RESEARCH IN UNIVERSITY OF PENNSYLVANIA DIGITAL ASSESSMENT FOR DIAGNOSIS TREATMENT OUTCOME MEASUREMENT AND THEN REMIND YOU ONCE DR. SCHULTZ IS DONE WITH HIS TALK IF ALL THE PANELISTS CAN SIT AT THE FRONT WE CAN ENGAGE IN A DISCUSSION BETWEEN THE COMMITTEE AND THE PANELISTS. >> THANK YOU. GREAT PLEASURE TO BE HERE TODAY AND TO FOLLOW-UP ON ALL THE OTHER GREAT WORK, WE WILL TALK ABOUT SOMETHING DIFFERENT, WE'RE GOING TO TALK USE OF NEW TECHNOLOGY TO DIGITIZE BEHAVIOR AND TO USE IT AS A CHARACTERIZATIONS TOOL, A DIAGNOSIS TOOL, A PREDICTIONS TOOL AND I WOULD ARGUE A BIOMARKER. SO BEHAVIORS IF YOU THINK ABOUT THEM ARE EXQUISITELY ORGANIZED REPRESENTATIONS OF NEURAL CIRCUITRY ACTIVITY. BEHAVIORS ARE THE SENSOR OF WHAT THE BRAIN IS DOING. MANY REGARDS BEHAVIORS ARE NO DIFFERENT THAN WHAT WE DO WITH NEURAL IMAGE, EEG, SENSORS ON THE SURFACE OF THE HEAD AND SENSOR ACTIVITIES WE PUT PEOPLE IN MRI MACHINES AND PREFER BRAIN ACTIVITY FROM BLOOD FLOW. THEY'RE DIRECT REPRESENTATIONS OF ORGANIZED NEURAL CIRCUITRY AND THEY HAVE DESIRABLE PROPERTIES FIRST AND FOREMOST THE BEHAVIORS THAT WE'RE LOOKING AT THAT BRING INDIVIDUALS WITH AUTISM TO THE CLINIC FIRST PLACE, THEY'RE A DIRECT REPRESENTATION OF THE PHENOMENA WE WANT TO STUDY OF THE SYMPTOMS AND PATTERNS OF DIFFICULTIES THAT WE MAY WANT TO TREAT. SO THIS IS ONLY TRUE, I THINK IT HASN'T BEEN AS TRUE IN THE PAST, IF WE CAN QUANTIFY THEM WELL. AND I THINK WITH THE ADVENT OF NEW ESPECIALLY COMPUTER VISION TECHNOLOGY, LANGUAGE LINGUISTIC LANGUAGE PROCESSING WE CAN MESHIER WITH THE PRECISION THAT ATTRACTED ME TO OTHER FIELDS, I WAS A BRAIN IMAGER MY WHOLE LIFE BUT NOW PRECISION TO MEASURE BEHAVIOR, I THINK THIS FIELD IS RIPE FOR EXPLOIT. SO I WANT TO REMIND US, IT'S OBVIOUS BUT AUTISM IS BEHAVIORALLY DEFINED CONDITION. WHAT I LIKE TO SAY TO MY COLLEAGUES WHEN EXPLAINING MY WORK IS THAT EVERYTHING THAT A CLINICIAN, EXPERT CLINICIAN OR PERSON IN AUTISM CAN PERCEIVE WHEN TRYING TO UNDERSTAND SOMEONE WITH AUTISM, THEY'RE MAKING A DIAGNOSIS, ASSESSING TREATMENT CHANGE, EVERYTHING THAT THEY CAN PERCEIVE WITH TECHNOLOGY WE CAN NOW DIGITIZE. THERE'S NOTHING THAT I CAN'T RECORD WITH CAMERAS, OR WITH MICROPHONES OR WITH SENSORS THAT LOOKS AT AROUSAL THAT YOU CAN'T PERCEIVE BUT THERE'S ADVANTAGES THAT TECHNOLOGY HAS. ONE IS THAT COMPUTER DON'T FORGET. I KNOW I FORGET WOKE TO WEEK SOMETIME LONGITUDINALLY AND THEY DON'T HAVE LAPPINGSES OF ATTENTION SO THERE'S REALLY ADVANTAGES TO IT. ALL THESE CAN BE CAPTURED WITH HIGH ACCURACY, REPETITIVE BEHAVIORS, IMITATION WHICH IS A SKILL WHICH IS OFTEN DIFFICULT FOR PEOPLE WITH AUTISM. SO THESE ARE GROSS MOTOR BEHAVIORS FACIAL EXPRESSIONS, EYE CONTACT GESTURE, THESE ARE NON-VERBAL BEHAVIORS ACOUSTIC PROPERTIES OF THE SPEECH INCLUDING RATE VOLUME AND LANGUAGE, THE WORDS YOU USE REALLY REFLECT YOUR INNER LIVES AND WE CAN CAPTURE THAT AND THAT REQUIRES TRANSCRIPTION AND THEN AUTONOMIC NERVOUS SYSTEM ACTIVITY. MY TIME IS BRIEF, WE'RE DOING THESE IN MY LAB, I'LL FOCUS ON FACIAL EXPRESSION AND NON-VERBAL COMMUNICATION AND GROSS MOTOR BEHAVIOR AS WELL, I HAVE ONE SLIDE ON LANGUAGE. SO AGAIN, THIS IS IF WE CAN MEASURE THINGS IN GRANULAR QUANTIFIED RELIABLE WAY AND EVEN REAL WORLD WHICH IS ANOTHER POINT FOR THIS, WE CAN PREDICT DIAGNOSIS CHARACTERIZE PEOPLE USE THAT CHARACTERIZATIONS FOR INTERVENTION PLANNING, WE CAN USE THAT CHARACTERIZATIONS FOR MEASURING THE AFFECTS OF INTERVENTION, POSITIVE OR NEGATIVE INCLUDING SIDE EFFECTS. WE CAN USE IT TO UNDERSTAND THE NATURAL HISTORY OF THE DISORRER. WE CAN USE IT TO UNDERSTAND GENETIC VARIANT, WE CAN USE IT TO UNDERSTAND BRAIN IMAGING RIGHT NOW WE USE BEHAVIOR BUT CODE SIMPLY 0 OR 1, THAT'S HOW MOST BIOLOGICAL STUDIES ARE DOING. IF WE EXPLAIN MANY MORE DETAIL WE HAVE MORE POWER TO UNDERSTAND THE BIOLOGY OF THE SAME TIME. SO SOME EXAMPLES, MEASURING GROSS MOTOR BEHAVIOR, THIS YOUNG BOY IS ALI, ABOUT TWO AND A HALF HERE, HE'S A TYPICALLY DEVELOPING CHILD. AND HIS MOTHER WAS A POST DOC UNTIL RECENTLY IN MY LAB. AND YOU CAN SEE HER SITTING THERE. HE WALKED INTO ONE OF OUR ASSESSMENT ROOMS,THIS IS OUR GROSS MOTOR LAB, HE'S NOT WEARING ANYTHING, ANY SENSORS WE CAN USING ADVANCES IN COMPUTER VISION ESTIMATE WHERE ALL HIS BONES AN JOINTS ARE IN HIS BODY AND MAP THEM AS HE MOVES ACROSS SPACE. HERE YOU SEE CAMERAS, THESE ARE LITTLE CAMERAS ON THE WALL UP HIGH AND WE STITCH IMAGES TOGETHER USING COMPUTER VISION SOFTWARE. TO MAKE A WHOLE BODY REPRESENTATION OF HIS. THE MAGIC HERE ENABLING US IS NOT THE HARDWARE. THE CAMERAS LITERALLY COST # A PIECE. -- $7 A PIECE. IT'S IN THE ADVANCES HOW TO ANALYZE THIS. WITH THIS WE CAN MEASURE MOTOR COORDINATION BALANCE AND POSTURE STABILITY, REPETITIVE BEHAVIOR. AND THE NETWORK I'M PART OF MAY NOT MENTIONED TODAY BUT ONE EARLIEST THINGS THAT WE HAVE FOUND IN THE PHENOTYPIC DOMAIN IS IMMATURITY AND GROSS MOTOR BEHAVIOR SIX MONTHS OF AGE WE FIND DIFFERENCES BETWEEN THOSE WHO GO ON AND THOSE WHO DON'T SO THERE'S FUNDAMENTAL MOTOR BEHAVIOR IN UNDERSTANDING AUTISM. USING THE SAME APPROACH WE CAN TRACK PEOPLE'S BEHAVIOR ACROSS TIME, THIS COMES FOR FREE. SO WE CAN UNDERSTAND EXPLORATION, SOCIAL PROXIMITY SEEKING, APPROACH, MOTOR LEARNS. KAREN ADOLL OF AT NYU DID MOTOR LEARNING LEARNING TO WALK, SHE HAS PAPER ENTITLED THOUSANDS OF STEPS AN DOZENS OF FALLS PER DAY. SHE HAD TO DO THIS WAS LABORIOUS, SHE HAD A GRID WHERE SHE HAD TO HAVE CO-BEHAVIOR AND WHAT -- IN ORDER TOATION THIS OUT. IT TOOK HER MONTHS TO DO THIS, THIS IS DATA THAT WE GET ESSENTIALLY FOR FREE. WE ARE ALSO INTERESTED IN ESTIMATING IMITATION SKILLS. IMITATION SKILLS WHEN YOU HAVE SOMEONE DO WHAT I DO OR PRETEND TO DO SOMETHING, SKILLS DIFFICULT FOR KIDS WITH AUTISM OR INDIVIDUALS WITH AUTISM. I SPENT A LOT OF CAREER LOOKING AT PERCEPTION TYPE OF THINGS RECOGNIZING FACIAL EXPRESSIONS AND WE HAVE A LOT OF DATA AND THERE'S DIFFICULTIES IN THIS AREA BUT THE AVERAGE AFFECT SIZE IN THAT FIELD IS.5 OR.6 STANDARD DEVIATION. THE AVERAGE EFFECT SIZE IN IMITATION TEND TO BE BETWEEN ONE AND THREE STANDARD DEVIATIONS SO IF YOU'RE INTERESTED IN PREDICTIONS ESPECIALLY DIAGNOSIS YOU WANT TO MEASURE THINGS THAT HAVE BIG EFFECT SIZE THAT WILL BE IMPORTANT FEATURES IN PREDICTIONS. WHAT YOU SEE HERE IS THE CAMERA SHOWING THIS IS EMILY IN MY LAB AND THIS IS A RESEARCH PARTICIPANT AND THIS IS LOOPING SO THEY'RE NOT DOING IT OVER THEMSELVES. AND YOU CAN SEE THE PRESIZE ARM PATH. WHAT WE'RE DOING HERE IS CALIBRATING THE WORK OF THE CAMERAS WITH THE WEARABLE. YOU CAN SEE IT ON THE WRIST. WE WANT TO KNOW THAT THE WEARABLE IS GOOD AS CAMERA USED INTERCHANGEABLY AND MOVE THEM TO THE NATURAL WORLD. BUT I ALSO WANT TO POINT OUT HERE IS OUR TREE CAMERA, WHEN WE DO FACE TO FACE ANALYSIS OF DIE CATTIC SYNCHRONY, THIS IS THE LITTLE CAMERA WE USE AND HERE THESE ARE OTHER KINDS OF CAMERAS, THESE ARE CONNECTS FROM THE XBOX THAT ARE USED TO ALSO HELP WITH GROSS MOTOR BEHAVIOR MEASUREMENT. THIS IS A SIMPLE DEMONSTRATION HOW YOU MIGHT MEASURE QUALITY OF IMFACE WE HAVE CONFEDERATE ON THE LEFT DOING ARM MOVEMENT AND PARTICIPANT, NOT SURE PERSON WITH AUTISM OR CONTROL ON THE STUDY. AND YOU CAN SEE MEASURE FLUIDSTY OF INDIVIDUAL MODELING AND DO A TIME SERIES ANALYSES TO UNDERSTAND HOW WELL DID THE PERSON IMITATE IT SO YOU QUANTIFY THE IMITATION SKILL. ANOTHER PILOT PROJECT FROM UNDERGRADUATE UNIVERSITY OF PENSACOLA, -- PENNSYLVANIA, WE WANTS TO LEARN ABOUT MOTOR LEARNS AND SHE'S A DANCER SO SHE HAS TAKEN A SMALL GROUP OF HEALTHY YOUNG ADULTS AND SHE'S BEEN TRAINING THEM HOW TO DANCE, SIX SESSIONS. THEY LOOK AT VIDEO OF HER, WHICH IS THIS, AND THIS IS A PARTICIPANT TRYING TO FOLLOW HER DANCE STEPS AND THEN TO DO THE QUANTITATIVE ANALYSIS WE QUANTITATE HER MOVEMENTS QUANTITATE THE PERSISTENCE MOVEMENT AND DO A DIRECT COMPARISON HOW WELL THEY'RE LEARNING TO SYNCHRONIZE BEHAVIOR IN THE FORM OF DANCE AND WE CAN LOOK AT CHANGE ACROSS TIME FROM THE FIRST SESSION TO THE SIX SESSION SO WE NIGHT NOT ONLY FIND DIFFICULTIES WITH MOTOR IMITATION BUT WITH MOTOR LEARNING. I HAVE A COLLEAGUE AT THE UNIVERSITY OF PENNSYLVANIA WHO STUDIES MOTOR LEARNING WITH FUNCTIONAL CONNECTIVITY IN THE BRAIN. THERE'S 12 OR 13 SUBNETWORKS IN THE BRAIN WITH FMRI AND SHE FINDS DIFFERENCES IN THE RELATIONSHIPS BETWEEN SUBNETWORKS IN THE BRAIN, ANOTHER ASPIRATION WOULD BE TO COMPARE THIS TO IMAGING. WE DO THIS PORTABLY, IT'S NOT AS PORTABLE AS A FOB BUT YOU CAN SEE A SET UP HERE WHICH IS TWO CONNECTS, A MILK CRATE AND LAPTOP AND WE TAKE THIS OUT TO YMCA AND SCHOOL PROGRAMS AND LAST SUMMER WE TOOK IT TO CAMPS, ONE OF THE BENEFITS OF THIS APPROACH IS THAT IT'S SCALABLE. WE WANT TO GET A LOT OF DATA ON LOTS OF KIDS. MOVING TO MEASURING NON-VERBAL FACIAL COMMUNICATIONS. THIS IS KEITH, COMPUTER SCIENTIST IN OUR LAB IN FRONT OF HIS LAPTOP USING THE WEB CAM AND MAKING FACIAL EXPRESSIONS. THIS IS THE REPRESENTATION OF FACIAL EXPRESSION. BY BEING ABLE TO REPRESENT IT WE CAN MEASURE IT, THAT IS THE MEASUREMENT ITSELF. YOU CAN SEE WITH EXQUISITE DETAIL MOW WE CAN BEGIN TO CAPTURE THESE THINGS. THIS IS NOW MEASURING EYE GAZE. HE WILL MOVE HIS EYE BALLS HERE AND YOU CAN SEE HOW WELL WE CAN CAPTURE IT, DRIVEN BY SOFTWARE. SO SO I HAVE BEEN INVOLVED IN SCREEN BASED iTRACKENING MY CAREER, THIS NOW PROMISES TO ALLOW US TO DO I TRACKING IN REAL ENVIRONMENTS TO UNDERSTAND REALLY WHAT PEOPLE ARE PAYING ATTENTION TO AND NOT. WHEN WE MEASURE INTERACTIONS WE PUT THE TREE CAM IN THE MIDDLE. WE USE THE PRINTERS TO PRINT AND CREATE OUR THIRD GENERATION OF THIS CAMERA. IN THE BASE THERE'S A BATTERY THAT RUNS FOR SIX HOURS, THERE'S A LITTLE HARDIESK THAT SCORE 40 HOURS OF HARD DEFINITION VIDEO SO IT'S VERY PORTABLE. THIS IS NOW KEITH IN THE REAL WORLD WITH HIS -- >> I WAS GOING FISHING AND BY MYSELF. >> I DON'T WANT THE VOLUME BECAUSE WE'RE NOT ANALYZING THE SPEECH IN THESE DATA. BUT YOU CAN SEE KEITH AND HIS STEP DAUGHTER TALKING, THAT'S BEACH AND OCEAN, THE OUTER BANKS. AND AT ONE POINT -- FROM THIS PARTICULAR SOFTWARE PIPELINE WE HAVE 70 READ OUTS ONE IS JUST EYE GAZE DIRECTION. YOU CAN SEE ONE POINT HE AVERTED HIS EYESND AND BRIANNA FOLLOWED IT. YOU CAN SEE THE FACE LAG THAT BECOME AS QUANTITATIVE FEATURE. YOU CAN SEE DURATION HOW LONG HE LOOKED AWAY. ALL THOSE ARE MEASURABLE AND ABLE TO USE THEM IN ALGORITHMS TO MAKE PREDICTIONS. TED BRODKIN THIS MORNING SPOKE ABOUT INTERVENTION STUDY. ONE OF HIS MAIN OUTCOME MEASURES IS CALLED THE CONTEXTUAL ASSESSMENT OF SOCIAL SKILLS, IT'S A SIX MINUTE CONVERSATION. THE FIST THREE MINUTES THERE'S A CONFEDERATE WHO ASKED TO TALK TO THE PERSON GET TO KNOW YOU. SO WE ANALYZED THE FACIAL HE CAN CESSIONS AND MOVEMENTS OF 17 INDIVIDUALS WHO HAD AUTISM AND 27 TYPICALLY DEVELOPING KIDS WHO WERE MATCHED. ON AGE AND IQ. WE USED A TREE CAMERA. LESS HALF DYADS HAD AUTISM I LIKE TO ASK PEOPLE TO LOOK AT THIS NOW AND DECIDE WHETHER THERE'S ANYONE IN THIS DYAD THAT MIGHT HAVE AUTISM. THAT'S THE COMPUTER TEST. THE COMPUTER TEST IS I WANT TO LABEL WHO HAS AUTISM AND WHO DOESN'T. AND IT DOESN'T HAVE THE BENEFITS OF LANGUAGE OR SOUND. I WON'T TELL YOU THE ANSWER. YET. IT'S A THREE MINUTE CONVERSATION. I CUT IT SHORT ON YOU. >> HOW ARE YOU? >> VERY GOOD. MY NAME IS DON. >> I GOT TO GET THIS SOUND TURNED OFF. THIS SHOWS THAT WE'RE USING LAND MARKS ON DIFFERENT FEATURES OF THE FACE. THIS IS TRANSLATION WHICH IS JUST A HEAD POSITION IN SPACE, THIS IS THE HEAD POSE AND X, Y, Z, EYE MOVEMENTS BLINK BROW CORNERS OF THE MOUTH, MOUTHED OPEN BODY MOVEMENT FEATURES TRACKING IN REAL TIME, THIS RED BAR IS THIS YOUNG MAN'S IMMEDIATE GRAM FOR HIS ACTIVITY ACROSS THE EXPERIMENT AND YOU CAN SEE THE DYNAMIC MOVEMENT OF IT. THIS IS A COON FED RATE AND YOU CAN SEE HER SCORES ON EACH OF THESE, WE CAN HAVE CHOSEN MORE FEATURES. THESE HAPPEN TO PUT INTO THIS ANALYSIS AND I SHOULD BACK UP THIS IS THE REALLY FIRST SET OF ANALYSES ON THESE DATA. THE QUESTION IS CAN WE MEASURE DIE CATTIC SYNCHRONY. PREDICT THIS PERSON'S BEHAVIOR BASED ON THIS, AND WE DO IT IN A FULLY CROSSED WAY, ANY MOVEMENT IN A TIME LAGGED WAY ANY MOVEMENT HERE, AND IT IS A MUTUAL INFORMATION IF I CAN UNDERSTAND WHAT'S GOING ON IN YOU FROM ME, THERE IS A STRUCTURE TO THAT CONVERSATION WHICH MEASURES SYNCHRONY OR RESIDENCE OF THAT CONVERSATION. SO THAT'S THE KEY DEPENDENT VARIABLE IN PREDICTIONS EQUATIONS. >> SO WE HAD 17 INDIVIDUAL A, 27 TYPICALLY DEVELOPING INDIVIDUALS, WE USE A MACHINE LEARNING CLASSIFICATION APPROACH, A 44 FOLD CROSS VALIDATION YOU LEAVE ONE OUT, TRAIN THE MODEL 143 AND TEST AND PUT THAT BACK IN AND TRAIN THE MODEL AGAIN. THESE ARE PRELIMINARY RESULTS BUT WE RUN THEM BY COMPUTER SCIENTISTS AN ACCURATE FOR THE SAMPLE, WE FOUND OVERALL ON BALANCE ACCURACY OF 90% PREDICTIONS THOSE WHO AUTISM AND THOSE WHO DIP. WE PREDICTED BETTER WHO DIDN'T HAVE IT THAN DID AND THE DIAGNOSTIC AGREEMENT BASED ON RATE OF DIAGNOSIS IN THIS GROUP WAS .81. JUST FOR REFERENCE, THE DSM FOLD TRIALS WAS .69 SO WE'RE DOING BETTER THAN THAT. IT MAYBE SAMPLE, I DON'T KNOW THE OVERALL SEVERITY OF THESE INDIVIDUALS IN TERMS OF CALIBRATED SCORE WAS MODERATE, ABOUT 7.3 SO THEY WEREN'T AS YOU CAN TELL NOT AS FRANK INDIVIDUALS WITH AUTISM. THERE'S THREE FEATURES CONSISTENTLY PRESENT, TOP WAS PRESENT IN EVERY FOLD, AND WHICH GIVES CONFIDENCE IT WAS ACCURATE. WAS THIS ROCKING BEHAVIOR THIS LADY EXHIBITING, IMPORTANT FEATURE DIAGNOSTICALLY. I'M GOING TO SPEED THROUGH THIS BECAUSE I MAY HAVE TAKEN TOO MUCH TIME. DOWN HERE, WE CAN IMPROVE PREDICTIVE POWER BY ADDING OTHER FEATURES TO THE MODEL. WE HAVE THE ENTIRE LANGUAGE DOMAIN AND WE HAVE FINDINGS IN THE LANGUAGE DOMAIN LIKE INCREASE USE OF DISFLUENCY, LONGER PAUSE RATE BETWEEN TERMS, DIFFERENT FUNDAMENTAL FREQUENCY AND PITCH, ALL THESE ARE THINGS WE KNOW IN A KEY TEST SENSE PREDICT AUTISM SO SHOULD BE HELPFUL IN THIS. I CALL SEXUAL COMPUTING, OTHERS HAVE DIFFERENT NAMES HAS POTENTIAL AND PROMISE. IT CAN HELP WITH CLINICAL CARE SO IF IT'S DONE IN SCHOOL AGE KIDS OR YOUNGER, IT WILL REDUCE WEIGHT LISTS REMOTE SCREENING AND TRIAGE IN VERY YOUNG KIDS IF WE CAN GET PARADIGMS THERE. EARLY MORE ACCURATE DIAGNOSIS, BETTER LONG TERM TREATMENT. AND AS OUTCOME MEASURE PROVIDES SOMETHING GRANULAR THAT CAN BE REPEATED IN REAL WORLD BECAUSE YOU OBSERVE PEOPLE YOU DON'T INTERFERE WITH PEOPLE. AND YOU CAN MEASURE CHANGE WITHOUT PRACTICE EFFECTS THEY CHANGE ACROSS TIME BECAUSE WE ASK FAMILIES TO DO SO MANY THINGS. IT CAN HELP WITH THE PROBLEM OF SCIENTIFIC REPRODUCIBILITY, THE TWO MAIN CULPRITS FIELD OF AUTISM IS HETEROGENEITY, IF WE CAN CHARACTERIZE THE HETEROGENEITY WE CAN CONTROL IT. AND IT IS SCALABLE SO BIG SAMPLES AND LASTLY AS I HAVE SAID, CAN REALLY HELP ACCELERATE BIOLOGICAL DISCOVERY WHETHER GENETICS OR BRAIN IMAGING BECAUSE WE THINK ENRICH OR MODELING, IT'S NOT GOING TO BE GENETIC INFORMATION OR BRAIN INFORMATION AGAINST A ONE OR 0, IT WILL BE MUCH RICHER MODEL OF THE BEHAVIOR WE'RE TRYING TO PREDICT AND WHEN IT COMES TO RISK GENES IT WILL BE ABLE TO HELP ISOLATE WHAT GENES ARE DOING WITHIN BEHAVIOR CONSIST OF KIDS WITH AUTISM. SO I WILL STOP THERE AND THANK YOU. [APPLAUSE] >> IF WE CAN HAVE ALL THE PANELISTS COME UP AND SIT AT THE TABLE, I WILL I'M SURE THERE ARE LOTS OF QUESTIONS FROM THE COMMITTEE. YOU CAN ADDRESS YOUR QUESTIONS TO INDIVIDUAL PANELISTS OR TO THE GROUP DEPENDING. SAMANTHA, I SEE YOU HAVE YOUR HAND UP ALREADY. SO START US OFF. LOTS OF INTEREST. >> I LIKE MOVEMENT BASED STUDIES ON AUTISM. I WANT TO SAY. I HAVE TWO QUESTIONS THOUGH ON THE SETTING WE JUST SAW. ONE IS I WONDER IF YOU CAN HAVE EASIER TIME DOING MOVEMENT BASED DIAGNOSIS. BY THE TIME WE'RE ADULTS WE HAVE OFTEN GONE THROUGH INTENSIVE DELIBERATE INTERVENTIONS TO CHANGE HOW WE MOVE. AND WE'RE NOT ALL GOING TO LOOK -- SOME OF US ARE VERY STIFF AND NOT GOING TO ROCK BECAUSE THEY'RE THINKING LIKE AT THE BACK OF THEIR HEADS, DON'T ROCK, DON'T ROCK, DON'T ROCK. EVEN IF THAT'S NOT EXPLICITLY SOMETHING THEY THINK THAT SOMETHING IS TRAINED VERY TRAINED INTHEM YOU MIGHT HAVE EASIER TIME WITH YOUNGER KIDS. AND THE OTHER AS I WANTED TO ALSO ASK ABOUT GENDER AND RACIAL DIVERSITY. BECAUSE I THINK THAT THEIR EMBODIED CULTURAL DIFFERENCES ACROSS CULTURES IN AMERICA. THAT MIGHT ACTUALLY NOTICE MANNERISMS THAT ARE CULTURALLY MEDIATED. >> ARE THERE BUTTONS FOR THESE THINGS? >> THANK YOU FOR THAT QUESTION. I THINK YOU MAKE A GOOD POINT HOW IT MAYBE EASIER OR MORE DIFFERENT TO MAKE PREDICTIONS AND DO THESE CHARACTERIZATIONSES. INTERVENTIONS HAPPEN AS WELL SO ONE CHALLENGE WILL BE WHICH WE WANT TO EXPLORE NEXT IS THAT WE CAN TAKE OUR -- TAKE OUR PREDICTORS OR SET OF FEATURES AND BEGIN LOOKING ACROSS DIFFERENT AGES AND DO THEY STILL PREDICT. WE DON'T KNOW THE ANSWER TO TO THAT. THIS IS ACTUALLY ALL FUNDED WORK AT THIS POINT SO WE PIGGY BACKED ON DR. BRODKIN STUDY AND HE WAS DOING THE ASSESSMENT, GREAT, MEASURE IT SO WE DIDN'T HAVE THE LIBERTY, WE DIDN'T MAKE THE CHOICE ANY OTHER WAY, OTHER THAN IT WAS AN EASY THING TO DO. SAME REASONS I APPRECIATE YOUR SECOND QUESTION AND COMMENT, THAT DIFFERENCES IN DIFFERENT CULTURAL BACKGROUNDS AND ETHNICITIES AFFECT NOT ONLY MOVEMENT BUT LANGUAGE. THE LANGUAGE WE'RE DRAWING FROM ADOS AND I DIDN'T SAY A LOT AIN'T BUT WE HAVE HUNDREDS OF ADOS AND WE'RE TRANSCRIBING THEM AND LOOKING AT ACOUSTIC PROPERTIES, AND THOSE CAME FROM FUNDED STUDIES WITH MORE GRADED CONCERTED EFFORT TO GET CULTURAL DIVERSITY AND THERE WE MATCHED PARTICIPANTS WITH AUTISM AND CONTROLS ON BACKGROUND, ON IQ, ON ETHNICITY. AND THAT WAS NOT A INTERACTING VARIABLE IN THOSE STUDIES SO FAR, BUT THEY'RE STILL SMALL. THE ONE STUDY SHOWED YOU HAD HUNDRED INDIVIDUALS. SO WE NEED -- WE CAN GET BIGGER DATA AND WE WILL. >> WONDERING IF THE TWO FOLKS FROM NORTH CAROLINA ON THE IMAGING STUDIES COULD SPEAK ABOUT WHETHER YOU ARE ABLE TO LOOK AT MINORITY POPULATIONS OR ETHNIC CULTURAL POPULATIONS AND HOW THAT AFFECTS THE DIFFERENTIATION. >> WE DIDN'T USE THAT AS A CHARACTERISTIC THAT WE EXAMINED SPECIFICALLY BUT WE DID BENEFIT FROM THE FACT WE HAD A FAIRLY DIVERSE GEOGRAPHIC ASCERTAINMENT PLAN SO WE WERE FUNDED AND ABLE TO FLY FAMILIES, THEY DID NOT HAVE TO USE THEIR OWN RESOURCES TO FLY OR DRIVE TO OUR CENTERS. SO WE TRIED TO BE MINDFUL DATA CORE WAS HELPFUL IN HELPING US TRACK AND CATALOG FAMILIES THAT ENROLLED MAKE SURE WE WERE REPRESENTATIVE AS POSSIBLE TO THE U.S. POPULATION STATISTICS. BUT AGAIN WE ALSO SUPPORTED FAMILIES WHO MAY NOT HAVE HAD THE RESOURCES TO PARTICIPATE IN A RESEARCH STUDY BECAUSE THE STUDY PROVIDED THOSE EXPENSES. >> JUST PIGGY BACK AND SAY THAT WE CONCLUDED GROUPS KIDS THAT WENT ON TO DEVELOP ASD DIDN'T DIFFER ON ECONOMIC STATUS OR ETHNIC DIVERSITY, WE ALSO TESTED TO SEE WHETHER OR NOT WE CO-VARIED FOR THOSE FACTORS TO MAKE SURE NOT DRIVEN BY DIFFERENCES AND IT WASN'T. >> I GUESS THE QUESTION THOUGH WHICH WAS AT NO TIME EXPLICITLY ANSWERED IS WHETHER PREDICTIONS ALGORITHMS WORK IN MINORITY POPULATIONS AND GATHERING THAT REQUIRES MORE STUDY. >> IT REQUIRES MORE STUDY. >> ALLISON NEXT THEN DIANA AND GERALDINE. >> MY QUESTION IS FOR MARK. FIRST THAT IS A BEAUTIFUL PIECE OF WORK. VERY EXCITING TO SEE. WHAT DID YOU SEE IN THE STANDS OF LOW RISK KIDS WHO WENT ON TO BE DIAGNOSED WITH ASD? WOULDN'T YOU NEED THAT FOR PREDICTIVE VALUE? WHAT DID THOSE LOOK LIKE? THEY WEREN'T ON THE GRAPH. >> GOOD QUESTION, ALLISON. ONLY THREE KIDS IN THE LOW RISK GROUP WENT TO DEVELOP AUTISM. THERE'S WAS NO DIFFERENT THANT THE LOW RISK KIDS WHO DEVELOP AUTISM. BUT SMALL, LITERALLY THREE KIDS. I THINK THAT YOUR OVERARCHING QUESTION IF I UNDERSTAND CORRECTLY IS WHETHER OR NOT THE BRAND NOVEL IS PRESENT JUST IN HIGH RISK INFANTS OR WHETHER IT'S PRESENT IN LOW RISK OR COMMUNITY AS CERTAIN SAMPLE AND ACTUALLY DAVID AND I ARE WORKING ON A SAMPLE OF KIDS FROM THE MIND INSTITUTE OF TODD LEERS ASCERTAINED IN SACRAMENTO FROM THE COMMUNITY AND AGAIN THAT'S UNPUBLISHED BUT THOSE KIDS ALSO HAVE INCREASED CSF. AND THAT'S A QUOTE UNQUOTE LOW RISK SAMPLE. >> DIANE. >> I'M DIANENA BIANCHI, DIRECTOR OF NICHD, CONGRATULATIONS TO HEATHER ON HER EXCELLENT STUDY. AND WE'RE VERY PROUD OF THE WORK PUBLISHED IN NATURE AND CONGRATULATE YOU ON YOUR INTERESTING DATA. HOWEVER, SOME OF YOU PRESENTED YOUR RESULTS SENSITIVITY AND SOME OF YOU PRESENTED POSITIVE AND NEGATIVE PREDICTIVE VALUES SO I WOULD LIKE TO HEAR FROM YOU WHETHER WETTER TO PRESENT THE DATA SENSITIVITY OR CONTEXT OF POSITIVE AND NEGATIVE PRETICKTIVE VALUES AND CAN WE -- PREDICTIVE VALUES AN CONSISTENT IN DECIDING ON ONE APPROACH. IS >> I THINK THAT IS ONE THING THAT IS TRUE IF YOU LOOK ACROSS A VARIETY OF STUDIES, THEY'RE REPORTING PPV POSITIVE PREDICTIVE VALUE OR THE SENSITIVITY OR EVEN CORRELATION, SOMETIMES CORRELATION IS BEING PRESENTED IN THE LITERATURE AS PREDICTOR AND IT'S AN ASSOCIATION OF TWO THINGS. WE THOUGHT A LONG TIME HOW WE WANTED TO BEST CHARACTERIZE THE DATA AND WE WANTED TO USE SENSITIVITY GRADING, WE HAVE A LOT OF INPUT FROM (INDISCERNIBLE) HE HAD DONE THIS WORK USING A DIFFERENT SAMPLE FROM HIS CANADIAN STUDY AND WE WANTED TO KNOW I GUESS GOING INTO IT HOW ACCURATE SENSITIVITY WAS HELPING US TO DETERMINE MISSING KIDS HOW MANY WERE WE MISSING AND WHEN WE GOT IT RIGHT HOW GOOD WERE WE. >> JEREMY. >> -- GERALDINE. >> I WANT TO COMMEND YOU ON THIS AMAZING SET OF WORK. I ABSOLUTELY LOVE THESE PRESENTATIONS. AND I KNOW IT'S ALSO VERY,VERY HARD WORK. SO SEEMS TO ME THAT THE NEXT STEP IS TO THINK ABOUT LOOKING AT SOME OF THESE SAME MEASURES IN POPULATIONS THAT MAY HAVE OTHER KINDS OF CLINICAL CONDITIONS BUT DON'T HAVE AUTISM. SO FOR EXAMPLE, EXTRA AXIAL CSF, I WAS SO EXCITED ABOUT THAT AND STILL AM. IT'S A REALLY IMPORTANT EARLY MARKER AND I WORK WITH A NUMBER OF PEDIATRIC NEUROLOGISTS NOW AT DUKE AND I RAN IN AND WOW THAT'S REALLY INTERESTING BECAUSE THAT'S A PRETTY NON-SPECIFIC FINDING. WE SEE THIS ACTUALLY IN A LOT OF OUR KIDS THAT WE DEAL WITH THAT HAVE DIFFERENT KINDS OF BRAIN INJURY OR OTHER METABOLIC CONDITIONS. OR EVEN IF YOU THINK FACE PROCESSING WHICH IS ONE OF MY AREAS, WE KNOW THAT THEY CAN SHOW UP AND PEOPLE WITH SCHIZOPHRENIA AND THINGS LIKE THAT. SO I THINK WE NEED TO THINK WHEN WE DO THESE SORT OF -- WHETHER POSITIVE PREDICTIVE VALUE OR SPECIFICITY AND SENSITIVITY THAT WE HAVE TO PUT IT IN THE CONTEXT OF IF YOU WERE TRYING TO USE THIS IN A GENERAL POPULATION. AND TO SAY NOW WHAT IS THE SENSITIVITY AND SPECIFITY WHICH IS DIFFERENT THAN WHEN YOU HAVE PEOPLE WITH AUTISM VERSUS TYPICAL PEOPLE, THAT'S A COMPLETELY DIFFERENT STATISTICAL ANALYSIS. SO I DO THINK WE HAVE TO FORCE OURSELVES NOW AS A FIELD TO TAKE THAT BROADER PERSPECTIVE, I THIS THE SOLUTION WILL BE THAT WHAT UNIQUELY PREDICTS AUTISM IS GOING TO BE THIS MULTI-DIMENSIONAL PREDICTIONS APPROACH, THERE'S A SPECIFIC PROFILE THAT MAY POINT IN THIS DIRECTION. THEN THE OTHER WAY TO THINK ABOUT IT IS MORE FROM AN RDOT PERSPECTIVE. SO THIS IS A GOOD MARKER OF A NEUROINFLAMMATORY PROCESS OR THIS IS A GOOD MARKER OF SOMETHING THAT HAS TO DO WITH SOCIAL APPROACH BEHAVIOR. BUT I DO THINK WE HAVE TO BE CAREFUL, WITH DIAGNOSTIC BIOMARKERS. >> APPRECIATE YOUR COMMENT. AS U YOU KNOW IT'S HARDER THE DO IT IN IMAGING THAN IN OTHER KINDS OF BIOMARKERS. NOT TO TOOT OWN HORN BUT WE ARE PUTTING ALL OF OUR CAMERAS IN 10,183 KIDS LAST YEAR HALF THROUGH SPECIALTY CLINICS AND WE BUILT A NEW BUILDING AND WIRED TWO HIGH HIGH-SPEED INTERNET CONNECTIONS TO EVERY ROOM FOR THE 5,000, IF WE CAN GET FAMILIES TO AGREE WE'LL MEASURE FOR ALL THE KIDS THEY SEE. THERE'S A LOT OF IFs IN THERE BUT IT'S AN OPPORTUNITY TO DO THE KINDS OF STUDIES YOU'RE ASKING FOR. FROM >> I JUST WANTED TO SAY THAT I -- AGREE COMPLETELY. SPECIFICITY IS A MAJOR ISSUE WHEN TRYING TO DEVELOP BIOMARKERS FOR AUTISM. AND COMPARING JUST LOW RISK KIDS NOT REALLY A FAIR COMPARISON WHEN WE TRY THE ROLL OUT TO THE COMMUNITY. IT TAKES COLLABORATION AND COLLABORATING WITH FOLKS AROUND THE WORLD NOW TO LOOK AT KIDS WITH OTHER GENETIC SYNDROMES, OTHER DEVELOPMENTAL DISABILITIES, ADHD, KIDS AT RISK FOR OTHER ASPECTS OF PSYCHIATRIC ILLNESS SO BABIES THAT ARE AT RISK FOR SCHIZOPHRENIA BECAUSE THEY HAVE AN OLDER -- A MOTHER DIAGNOSED. AND REALLY TO ANSWER THAT QUESTION IS THE SPECIFIC TO AUTISM. THAT'S A QUESTION THAT NEEDS TO BE CONSIDERED FOR ALL OF OUR BIOMARKER RESEARCH. >> LEWIS. >> TWO QUESTIONS. ONE, AS I WAS WONDERING IF THERE ARE REASONS WHY PSYCHOPHYSICS SENSORY HYPERSENSITIVITY SITUATION WERE NOT INCLUDED IN FNIH STUDY? A LOT STIPULATED BY THE RFA THE IDEA IS TO HONE IN ON SOCIAL COMMUNICATION. SO A LOT OF PARADIGMS IS ONE NICE THING ABOUT ELECTROPHYSIOLOGY IS SO WE CAN LOOK AT LOW LEVEL LEVEL VISUAL PERCEPTION IN THAT WAY. BUT REALLY BATTERY IS FOCUSED SPECIFICALLY ON (INAUDIBLE). >> I HAD A QUESTION ON CEREBROSPINAL FLUID. WHEN I SEE FLUID OUTSIDE THE BRAIN IT'S INDICATIVE OF PRESSURE BASICALLY. YOU HAVE TO CREATE SPACE BETWEEN THE SKULL AND THE BRAIN. HAVE YOU LOOKED AT THAT OR LOOKED AT FOR EXAMPLE EMPHATICS WHICH ARE NOW PERHAPS MAJOR DRAINAGE FOR -- >> GOOD QUESTION. IN REGARDS TO INTRACRANIAL PRESSURE IT'S SHOWN KIDS WITH INCREASE CSF IN THIS SPACE DON'T HAVE INCREASED CREPEIAL PRESSURE WHICH IS STRANGE EXCEPT WHEN YOU THINK ABOUT THE SUTURES OF THE SKULL NOT FUSED AT THAT EARLY AGE, SKULL EXPANDING WITH THAT. THESE KIDS HAVE BIGGER BRAINS AN MORE CSF BUT INTRACRANIAL PRESSURE IS NORMAL BECAUSE IT ALLOWS TO GROW WITH AGE. AS FAR AS THE LYMPHATICS, THAT'S THE QUESTION WE WANT TO ANSWER AND THAT'S THE CARTOON THAT I WAS SHOWING THERE, COLLABORATE WITH JONATHAN KIPNIS GROUP AND LYMPHATIC TISSUE, THE ROLE OF CSF AND HOW TO CLEAN THE BRAIN. THAT'S THE MECHANISM WE TEST IN THE MOUSE MODEL. >> DR. FARCHIONE, DID YOU HAVE A QUESTION? >> NO. >> ONE OF THE THINGS THAT I BELIEVE MAYBE MISTAKEN BUT MOST STUDIES YOU ARE DESCRIBING WERE COMPARING HIGH RISK INDIVIDUALS WHO GO ON TO GET IT VERSUS THOSE THAT DON'T OR TO TYPICALLY DEVELOPING AND WONDERING IF YOU CAN SPEAK TO WHETHER YOU THINK SOME OF THESE PREDICTORS WORK IN A MORE GENERAL POPULATION OBVIOUSLY MAYBE NOT ADS WELL BUT DO YOU THINK THAT THEY ARE THE SAME PHENOMENON THAT ARE HAPPENING IN NON-HIGH RISK INDIVIDUALS BUT WHO LATER GO ON TO DEVELOP AUTISM. >> DR. HAZLETT. >> WE HAVE ANOTHER STUDY FORTUNATE TO BE FUNDED, IT'S AN NICHD STUDY TO LOOK AT FRAGILE X. SO IN A DIFFERENT SYNDROME, WE CAN TEST SPECIFICITY A LITTLE BIT BETWEEN AUTISM AND FRAGILE X MODALITY TO SEE WHETHER OR NOT WE'RE SEEING A STRONG EFFECT SAME EFFECT THE FRAGILE X INFANTS WE HAVE INCLUDED WERE ABLE TO DISTINGUISH IF THEY HAVE AUTISM OR NOT, THOUGH SOME MAY ARGUE THERE'S COMPOUND TRYING THE TEASE APART SYMPTOMS. CERTAINLY I WOULD ANTICIPATE IF YOU ROLL OUT INTO A GENERAL POPULATION THAT THE -- IT WOULDN'T BE ADS STRONG ADS A PREDICTOR. BECAUSE, TIGHTLY CONTROL FOR THINGS LIKE PREMATURITY AND BIRTH WEIGHT. SPECIFICALLY THE AGE AT THE TIME OF THE SCAN. SO THAT WE WERE ABLE TO HAVE A CLEAN SAMPLE AND DIDN'T GET CONFUSED BY OTHER VARIABLES AND ABE TO LOOK AT THE BRAIN EFFECT THAT WE WANTED TO LOOK FOR. BUT I ANTICIPATE A GENERAL POPULATION IT WOULD BE MORE DIFFICULT. >> ASK THE PANEL AS FOLLOW-UP WE CAN DO A FAIRLY GOOD JOB OF SCREENING USING CLINICAL INSTRUMENTS AND PARENTAL INSTRUMENTS AT AGE OF 18 MONTHS TO 24 MONTHS, THAT'S WHERE THE RECOMMENDATIONS COME FROM THE AMERICAN ACADEMY OF PEDIATRICS. BUT WHAT'S THE HOPE OR POSSIBILITY OF DOING THAT KIND OF GENERAL POPULATION SCREENING AT AN EARLIER AGE. ONE THING WE DO KNOW IS EVEN WITH THAT SCREENING, THERE'S STILL DELAYS TO TREATMENT AND TREATMENT SHOULD START AS SOON ADS POSSIBLE. >> I'LL KICK OFF, THEN HAND TO MY COLLEAGUES MORE EXPERTS WITH THIS. BUT THE WAY I SEE IT THE WORK THAT DR. MCPARTLAND IS DOING OR DR. SCHULTZ IS A FIRST TIER SCREENING SO ALMOST EVERY BIOMEDICAL CONDITION YOU HAVE DIFFERENT TIERS TAKE A BLOOD PRESSURE BEFORE YOU TAKE ANY MEDICATION. SO WHAT THEY'RE TALKING ABOUT IS TRACTABLE AND IMPLEMENTABLE AND NOT AS EXPENSIVE. HOPING TO DOWNWARD EXTEND TO REAL YOUNG BABIES. SO MAYBE THAT'S A TIER THAT PUTS A CERTAIN AMOUNT OF SPECIFICITY AND THEN MRI IS FOR THOSE KIDS THAT ARE ULTRAHIGH RISK IN ORDER TO REALLY CONFIRM THOSE KIDS ARE SUITABLE CANDIDATES FOR THE TREATMENT. >> I THINK THE MOST INTERESTING CHALLENGING PART OF YOUR QUESTION RELATES TO THE SERVICE DELIVERY SYSTEM. SO EVEN IF WE GOT IT WORKING, THEN WHAT? I THINK THAT THERE'S NOT -- THE FIRST QUESTION, WHAT DO YOU DO? YOU FIND A ONE-YEAR-OLD IS GOING TO DEVELOP AUTISM WHAT DO YOU DO? WE HAVE IDEAS ABOUT THAT, WE HAVE PRELIMINARY DATA ABOUT THAT. BUT I THINK IT'S STILL A MATTER OF -- AND THIS IS I THINK ONE OF THE REASONS WE WANT TO HAVE BIOMARKERS RATE LIMITING FACTOR FOR EVERYTHING THAT WE DO IS AVAILABILITY OF EXPERTS. WE COLLABORATE TO TRY TO FIGURE OUT WAYS TO USE TABLETS TO DETECT AUTISM IN INDIA FOR EXAMPLE. BECAUSE THERE'S NO AUTISM EXPERTS. AROUND. SO I THINK ONE IDEA IS GOING TO BE -- PEOPLE ARE WORKING ON IT CONTINUE TO TRANSLATE TREATMENTS TO WAYS THAT CAN BE DELIVERED BY PEOPLE WHO AREN'T CLINICAL EXPERTS BY PARENTS, BY TEACHERS, BY LOCAL HEALTHCARE PROVIDERS. YOU'RE RIGHT. LISTENING TO YOUR QUESTION IS A TREMENDOUS AMOUNT OF INFRASTRUCTURE THAT HAS TO BE CREATED TO REALLY RUN WITH SOME OF THESE FINDINGS. I AGREE. >> I'LL ADD ONE MORE THING. SO ONE OF THE THINGS THAT WE HAVE DONE IN OUR LAB WITH THE CAMERAS AND THE LANGUAGE REPORTING IS EVERY PARADIGM WE HAVE IS FIVE MINUTES OR LESS. WE EPIVISION A DAY, WHATEVER ASPECTS, PARADIGMS MEANT TO ELICIT BEHAVIORS YOU CARE ABOUT AND THERE'S NO BOOK HOW TO DO IT WE ENVISION NURSES AND PRIMARY CARE ADMINISTERING THESE THINGS FOR EVERYONE WHO COMES THROUGH. IF WE CAN WHITTLE DOWN TO CONVERSATION. >> GERALDINE HAS A BURNING ONE BUT I HAVE TO FOLLOW-UP WITH A QUICK SELFISH QUESTION WHICH THOSE WHO KNOW ME KNOW WHY I'M ASKING. COUP YOU DO THEM THROUGH A COMPUTER WITH A VIDEO INSTEAD OF A PERSON INTERFACE, SOME THINGS YOU'RE DOING AND ROLL OUT OVER THE WEB. >> WE COULD. WE TALK TO CABLE TV PROVIDERS AND ASKING THEM CREATE AUTISM COMMERCIALS AND THE CONTENT WOULD BE THINGS THE KID MIGHT STEM TO. >> GERALDINE, SORRY TO USURP YOU A MOMENT. >> NO. IN THINKING ABOUT YOUR QUESTION, I DO -- I THINK A APPROACH IS SO CALLED RISK CALCULATOR APPROACH USED IN CANCER AND MENTAL HEALTH CONDITIONS WHERE YOU THINK ABOUT A PEDIATRICIAN KNOWING A VARIETY OF RISK FACTORS. PREMATURITY ADVANCED PARENTAL AGE CERTAIN GENETIC MARKERS, INCREASE HEAD SIZE, ET CETERA, PERHAPS SOME OF THESE OTHER MARKERS WOULD BE PUT INTO THAT. AND THE ACTIONABLE STEP WOULD BE INCREASED SURVEILLANCE. THAT'S I THINK THE KEY WHEN YOU HAVE A HEURISTIC INFANT TO IDENTIFY THEM, SO YOU HAVE INCREASE SURVEILLANCE. BECAUSE INDEED WE ARE DEVELOPING INFANT AT INTERVENTIONS THAT ARE PRETTY LOW INTENSITY WHERE YOU CAN PROVIDE STIMULATION AND MITIGATE SOME OF THE CONSEQUENCES OF WHAT WE SEE NOW IS A VULNERABLE BRAIN BECAUSE OF RISK CALCULATIONS. >> DR. PELPHREY. >> COMING BACK TO THE POINT JAMIE WAS MAKING RELATING BACK TO ONE FIRST POINT ABOUT PREDICTORS AND SOMEWHAT STRATIFICATION BIOMARKERS. IF WE SAID AS ONE OF OUR GOALS FINDING BIOMARKERS THAT CAN BE USED AS LEVERS FOR ENHANCEMENT OF TREATMENTS, ONE ADVANTAGE OF BRAIN IMAGING IS YOUR FAIRLY DIRECTLY MEASURING THE SYSTEM PRODUCING BEHAVIOR. AND SO IF YOU FIND ACTIVATION PATTERN PREDICTS TREATMENT RESPONSE, AND IN THOSE KIDS WHO DON'T HAVE IT THEY DON'T RESPOND TO THE EVIDENCE BASED TREATMENT A STRONG PREDICTIONS IS GENERATE THAT ACTIVATION PATTERN PRIOR TO ONSET OF TREATMENT, YOU'LL BRING ABOUT RESPONDENT. YOU CAN LEVERAGE THE STRENGTH OF THOSE TOOLS LOOKING BRAIN STIMULATION PHARMACOLOGICAL AGENT OR SOMETHING LIKE THAT. THAT'S SOMETHING NOW BECOMING POSSIBLE, WORK AROUND FOR EXAMPLE NEURAL FEEDBACK SHOWING THAT THE MERE INSTANTIATION OF THE STATE OF CONTROLLING OBSESSIVE COMPULSIVE THOUGHTS BRINGS ABOUT SUBSEQUENT CHANGE. IT DOESN'T MATTER HOW YOU GET THERE, WHICH IS FASCINATING. >> SO THANKS. I THINK THAT THAT REMARK WE CAN CLOSE UP. LARRY HAS A BURNING COMMENT. BY ALL MEANS. >> SO BEAR WITH ME JUST A MOMENT. JUST A MOMENT. OKAY? I WILL GO FIRST FOR ONCE. SO THE QUESTION I HAVE IS IS THERE AN ADVANTAGE TO CHARACTERIZING THIS AS PREDICTIVE OF AUTISM? OR PREDICTIONS OR PREDICTIVE OF CONSTELLATION OF BEHAVIORS THAT WE INTERPRET AS AUTISM. AND I SAY THAT, AGAIN, I DO THIS FROM POLICY PERSPECTIVE, SO OUR EARLY INTERVENTION PROGRAM UNDER IDEA, BIRTH THROUGH TWO, IS PREDICATED ON NOT IDENTIFYING A DISABILITY AT THAT AGE. THERE'S NOT THAT THEY CAN'T BUT THERE'S A REAL BIAS TOWARDS NOT IDENTIFYING THE DISABILITY. SO I WOULD HOPE THAT SOMEHOW YOU WOULD INTERFACE WITH THAT BEHAVIOR ON THE PART OF THE THOUSANDS AND THOUSANDS OF PRACTITIONERS AND DOING MOST STATIONS OUT THERE WHO ARE -- DIAGNOSTICS OUT THERE CODING TO GET SERVICE BECAUSE THE BIAS IS ON DEVELOPMENTAL DELAY, OR KIND OF GENERIC DIAGNOSTIC CATEGORY. >> I HAVE NO IDEA WHAT YOU'RE ARGUING FOR, LARRY. >> I'M NOT ARGUING FOR ANYTHING, I'M SORT OF PUTTING OUT THERE AS THERE IS A REALITY THAT CALLING IT AUTISM AT THAT AGE AS OPPOSED TO CALLING IT THIS CHILD IS GOING TO DEVELOP A GROUP OF BEHAVIORS THAT NEEDS INTERVENTION. BECAUSE YOU ARE DOING IT WITHIN THE CONTEXT OF A SYSTEM THAT'S BIASED -- IN YOUR UNIVERSITIES AND ALL YOUR CLINICAL HOSPITAL SETTINGS AND MEDICAL SETTINGS, YOU DO DIAGNOSES. BUT WITHIN THE WORLD OF EARLY ENTERVENTION WHICH IS WHERE THESE CHILDREN ARE GOING TO BE FUNCTIONING AT THAT AGE A DIAGNOSTIC CATEGORY IS NOT NECESSARILY AN ADVANTAGE. ESPECIALLY BECAUSE PARENTS DRIVE A LOT OF THAT. AND THEY DON'T WANT A DIAGNOSIS AT 12 MONTHS OF AGE. THEY WANT TO KNOW THERE'S A POSSIBLE PROBLEM HOW TO DEAL WITH IT BUT NOT NECESSARILY SAYING THE KID INTELLECTUALLY DISABLED, THE KID IS AUTISTIC. >> NOW I GOT IT. >> GLAD WE PROVIDED -- >> COMMENT THEN MOVE ON. DR. HAZLETT. >> I THINK THE THING THAT MAYBE EXCITES ME ABOUT THE WORK WE'RE DOING LOOKING A THESE EARLY TRAJECTORIES AND THE BRAIN DIFFERENCES THAT WE'RE SEEING WITH THE KNOWLEDGE THAT ALL THIS GROWTH IS HAPPENING IN EARLY YEARS, THAT YOU COULD ALTER THAT TRAJECTORY BUT IF YOU CAN DO SOMETHING AT 12 MONTHS TO VEER THAT TRAJECTORY TO A DIFFERENT COURSE, THAT MAYBE WE'RE NOT TALKING DIAGNOSIS SO MUCH AS WHAT'S HAPPENING THAT YOU CHANGED. AND THAT'S EXCITING. >> THAT WAS MY EXACT POINT. IT ISN'T THAT YOUR DECLARING IT AUTISM, IT'S THAT YOU'RE DECLARING TRAJECTORY OF BEHAVIORS THAT YOU CAN POSSIBLY INFLUENCE IN A POSITIVE WAY. >> ON THAT POSITIVE NOTE, WE'RE GOING TO TAKE A BREAK. WE WILL RETURN AT 3:40 WHICH IS SIX MINUTES FROM NOW. SO PLEASE DO TRY TO GET BACK BECAUSE I WANT TO STAY ON TIME. ALL RIGHT. WE CAN GET ON WITH THE FINAL PRESENTATION OF THE DAY. WHILE YOU'RE GETTING TO YOUR SEATS I WILL INTRODUCE OUR NEXT PRESENTATION WHICH IS FROM A FELLOW MEMBER OF THE IACC. DR. STEWART SHAPIRA WHO WILL GIVE US THE UPDATE ON THE LEARN THE SIGNS, ACT EARLY PROGRAM AT THE CDC, HE'S CHIEF MEDICAL OFFICER AND ASSOCIATE DIRECTOR FOR SCIENCE ON NATIONAL CENTER FOR BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES AND THE CENTERS FOR DISEASE CONTROL AND PREVENTION. DR. SHAPIRA. >> THANK YOU VERY MUCH FOR THIS INVITATION AND LET ME BRIEFLY SAY WHAT THE GENESIS OF THIS PRESENTATION IS, A FEW WEEKS AGO, I GAVE AN OVERVIEW PRESENTATION FOR LEARN WILL SIGNS ACT EARLY AT ANOTHER NIH MEETING AND SUSAN HEARD THAT PRESENTATION AND SHE SAID WHY DON'T YOU UPDATE THE COMMITTEE ON LEARN THE SIGNS ACT EARLY SO THAT'S THE REASON FOR PROVIDING THIS PRESENTATION. NOW, FOR THOSE WHO AREN'T AWARE, LEARN THE SIGNS ACT EARLY, THE BASIS OF IT IS TO IMPROVE EARLY IDENTIFICATION OF CHILDREN WITH AUTISM SPECTRUM DISORDER AND WITH OTHER DEVELOPMENT AT DISABILITIES SO THAT CHILDREN AND FAMILIES CAN GET THE SERVICES AND SUPPORT THAT THEY NEED AS EARLY AS POSSIBLE. AND THE PROGRAM EQUIPS HEALTHCARE PROVIDERS AS WELL AS EARLY CARE PROVIDERS, EDUCATION PROVIDERS, AND FAMILIES WITH FREE TOOLS AND RESOURCES TO MONITOR A CHILD'S DEVELOPMENTAL MILESTONES AND TO KNOW HOW TO ACT EARLY IF THERE ARE ANY SORT OF DEVELOPMENTAL CONCERNS. AND THE GOAL IS TO INCREASE EARLY IDENTIFICATION OF YOUNG CHILDREN WITH AUTISM SPECTRUM DISORDER AND OTHER DEVELOPMENTAL DISABILITIES BY HELPING FAMILIES LEARN THE SIGNS OF TYPICAL DEVELOPMENT AND TO ACT EARLY IF THERE ARE ANY CONCERNS. NOW THE LEARN THE SIGNS ACT EARLY TOOLS AND MATERIALS ARE HIGH QUALITY, THEY ARE ALL RESEARCH BASED AND PARENT FRIENDLY. AND THEY HELP PARENTS MONITOR OR TRACK THEIR CHILD'S DEVELOPMENT AND PROGRESS IN AN ONGOING WAY THROUGH THE AGE OF FIVE YEARS. AND PARENTS ARE ALSO PROVIDE WITH PRACTICAL GUIDANCE ON WHAT TO DO IF THEY HAVE A DEVELOPMENTAL CONCERN. NOW, SOME OF THE LEARN--THESE SIGNS, ACT EARLY, MATERIALS AND RESOURCES ARE PICTURES HERE AND THEY ARE ALL AVAILABLE ON THE WEBSITE THAT'S LISTED ON THE SLIDE. NOW LEARN THE SIGNS, ACT EARLY DEVELOPMENTAL MILESTONES ARE ADAPTED FROM THE AMERICAN ACADEMY OF PEDIATRICS CARING FOR YOUR BABY AND YOUNG CHILD BIRTH TO AGE FIVE AND FROM BRIGHT FUTURES GUIDELINES FOR HEALTH SUPERVISION FOR INSTANTS, CHILDREN AND ADOLESCENTS. AND THE MILESTONES HAVE BEEN ADAPTED FOR PLAIN LANGUAGE AND TESTED WITH PARENTS FOR READABILITY AND FOR THEIR EASE OF USE. THE MATERIALS ARE REPRODUCIBLE AND DON'T HAVE ANY COPYRIGHTS. THEY ARE IN SPANISH AND OTHER LANGUAGES AND THEY SUPPORT AND COMPLEMENT DEVELOPMENTAL SCREENING AND WE'VE HEARD SOME EARLIER ABOUT DEVELOPMENTAL SCREENING. SOME MATERIALS SHOWN ON THIS SLIDE ARE A MILESTONE CHECK LIST FROM TWO MONTHS TO FIVE YEARS WHICH INCLUDE WARNING SIGNS AND RED FLAGS AND MESSAGES ABOUT WHAT TO DO IF CAREGIVERS HAVE CONCERN. ADDITIONALLY, THERE ARE CHILDRENS BOOKS WHICH ARE INTERACTIVE CHILDREN'S STORIES THAT ALSO EDUCATE PARENTS ABOUT DEVELOPMENTAL MILESTONES. AND ONE OTHER RESOURCE TO POINT OUT THAT'S SHOWN ON THIS SLIDE IS FREE CONTINUING EDUCATION TRAININGS WHICH INCLUDE THE AUTISM CASE TRAINING FOR HEALTHCARE PROFESSIONALS AND THE WATCH ME CELEBRATING MILESTONES AND SHARING TURNOVERS TRAININGS SPECIFICALLY FOR EARLY EDUCATORS. SO GETTING THE MATERIALS FOR LEARN THE SIGNS ACT EARLY IS PRETTY EASY. THEY CAN BE PRINTED RIGHT OFF THE WEBSITE OR THIS CAN BE ORDERED THAT HAS ALL THE MATERIALS TO PRINT OR PRINTED COPIES CAN BE ORDERED FROM THE CDC IN LIMITED QUANTITIES. NOW HERE'S SOME OF THE NEWEST RESOURCES FROM LEARN THE SIGNS ACT EARLY. THE NEWEST CHILDRENS BOOK IS CALLED WHERE IS BEAR? IT'S AN ENGAGING STORY FOR TWO YEAR-OLDS THAT UTILIZES AGE APPROPRIATE DEVELOPMENTAL MILESTONES. AND THEN LAST SUMMER, LEARN THE SIGNS ACT EARLY FINISHED WHAT'S CALL THE MILESTONES IN ACTION WHICH IS A MILESTONES PHOTOAND VIDEO LIBRARY. AND THIS RESOURCE PRESENTS EACH DEVELOPMENTAL MILESTONE FROM AGE TWO MONTHS TO FIVE YEARS AND PHOTOS OR VIDEOS SO THAT PARENTS CAN APPRECIATE WHAT IT MEANS FOR THEIR CHILD TO REACH A PARTICULAR MILESTONE. AND THEN THE OTHER ITEMS SHOWN HERE IS WE'RE PRETTY EXCITED ABOUT, A MILESTONE TRACKER WHICH IS A SMALL PHONE APP FOR PARENTS TO MONITOR AND TRACK THE DEVELOPMENTAL MILESTONES AND IT ALERTS PARENT FIST THERE ARE ANY DELAYS IN THEIR CHILD'S DEVELOPMENT AND ADVICES THEM ON HOW TO TAKE ACTION AND IT WILL BE AVAILABLE IN MAY OF 2017. AND THOU I WILL SHARE WITH YOU SOME MORE INFORMATION ABOUT THE APP AND ITS FEATURES. SO IT WILL BE RELEASED ON THE APP STORE SOON FOR IPHONE AND OTHER IOS DEVICES AND AN ANDROGEN DROID VERSION WILL BE--ANDROID VERSION WILL BE FOLLOWED SOMETIME THIS FALL. SPANISH VERSIONS ARE COMING NEXT YEAR AND CDC MILESTONES TRACKER APP PROVIDES A FUN AND SIMPLE WAY FOR PARENTS TO TRACK THEIR CHILD'S EARLY DEVELOPMENTAL MILESTONES. THE APP INCLUDING A NUMBER OF DIFFERENT FUNCTIONS AND FEATURES FIRST. THERE WILL BE DEVELOPMENTAL MILE STOAP CHECK LISTS FROM TWO MONTHS THROUGH FIVE YEARS OF AGE THAT INDLIEWD--INCLUDE THE PHOTOS AND VIDEOS FROM ALL THE MILESTONES VIDEO AND ACTION LIBRARY. ALONG WITH THE ABILITY TO E-MAIL A CHILD'S CHECK LIST RESULTS. THERE IS A WHEN TO ACT EARLY SECTION WITH WARNING SIGNS, LISTS AND INFORMATION ON WHEN TO ACT EARLY AND TALK TO A DOCTOR ABOUT DEVELOPMENTAL DELAY. THERE ARE ALSO PARENTING TIPS AND ACTIVITIES TO PROMOTE DEVELOPMENT AS WELL AS HEALTHCARE APPOINTMENT FEATURES AND REMINDERS ABOUT AGE APPROPRIATE DEVELOPMENTAL SCREENING. SO THE MAIN MENU IS SHOWN HERE IN THE SLIDE IN THE IMAGE ON THE LEFT AND AN IMAGE FROM THE MILESTONE CHECK LIST FEATURE IS SHOWN ON THE RIGHT. NOW HERE ON THE LEFT IS A SCREEN SHOT OF THE MILESTONE QUICK VIEW SECTION WHERE THERE ARE LISTS OF MILESTONES IN EACH DOMAIN AND ON THE RIGHT IS A SCREEN SHOT FROM THE MILESTONE SUMMARY PAGE WHICH SUMMARIZES RESPONSES TO THE MILESTONE CHECK LIST AND WARNING SIGNS LIST. AND FROM THIS PAGE, PARENTS CAN E-MAIL THEIR CHILD'S PERSONALIZED SUMMARY TO A HEALTHCARE PROFESSIONAL OR SPECIALIST. ONCE THE APP IS AVAILABLE IN THE APP STORE, IT WILL BE PROMOTED TO PARENTS TO EARLY CARE AND EDUCATION PROVIDERS TO HEALTHCARE PROVIDERS AND OTHER IMPORTANT FAMILY SERVICE PROVIDERS. NOW CONTINUING WITH THE UPDATE OF LEARN THE SIGNS ACT EARLY, THE PROGRAM ALSO SUPPORTS 45 ACT EARLY AMBASSADORS WHO WORK IN U.S. STATES AND TERRITORIES TO IMPROVE EARLY IDENTIFICATION OF CHILDREN WITH DEVELOPMENTAL DELAY AND DISABILITIES ON A GRASS ROOTS LEVEL. AND THEY WORK WITHIN STATE AND LOCAL SYSTEMS. AND PARTNERSHIPS ARE ALSO VERY KEY TO LEARN THE SIGNS ACT EARLY. THE PROGRAM WORKS CLOSELY WITH U.S. FEDERAL AGENCIES AND NATIONAL ORGANIZATIONS TO MAKE SURE THAT THE MATERIALS ARE RESPONSIVE TO THE NEEDS OF DIFFERENT PROGRAMS. THE MATERIALS, RESOURCES, AND MESSAGES ARE EMBEDDED IN HEALTHCARE SYSTEMS IN CHILDCARE, IN HOME VISITING, IN CHILD WELFARE AND IN OTHER PROGRAMS. SO I WANT TO THANK YOU FOR YOUR ATTENTION AND FOR MORE INFORMATION, THIS IS THE WEBSITE FOR LEARN THE SIGNS ACT EARLY. [ APPLAUSE ] >> THANK YOU VERY MUCH ARE THERE QUESTIONS OR COMMENTS FOR DR. SHAPIRA? HAVE A QUESTION IN CONTEMPLATING SIMILAR EFFORTS FOR PUBLIC OUTREACH THERE IS ALWAYS THE QUESTION ABOUT HOW TO UPDATE AS NEW INFORMATION BECOMES AVAILABLE. SO I'M WONDERING IF YOU HAVE A PROCESS TO CONTINUALLY UPDATE THIS PROGRAM WITH NEW SCIENTIFIC INFORMATION OR NEW INTERVENTIONS THAT COME ALONG, NEW RECOMMEND RECOMMENDATIONS, ET CETERA OR IF IT'S ON THE PLANNING PROCESS FOR THAT? >> SO ALL THE INFORMATION IS EVIDENCE-BASED AND UPDATES HAVE OCCURRED TO LEARN THE SIGNS ACT EARLY MATERIALS AS NEW INFORMATION HAS BECOME AVAILABLE. I DON'T KNOW IF THERE IS A SPECIFIC--I'M NOT AWARE THERE IS A SPECIFIC UPDATING PROCESS THAT THE PROGRAM USES. I DO HAVE COLLEAGUES ON THE PHONE FROM LEARN THE SIGNS ACT EARLY THAT MAY BE ABLE TO ADDRESS--I DON'T KNOW IF WE CAN HEAR THEM, IF THEY ARE ON MUTE. >> ANYONE OUT THERE CAPABLE OF SPEAKING TO US. >> KATIE DO YOU HAVE INFORMATION ON UPDATES FOR LEARN THE SIGNS EARLY AS NEW EVIDENCE COMES FORWARD OR SCIENTIFIC INFORMATION. >> YES, CERTAINLY, AND OUR WHOLE TEAM IS CONSTANTLY EVALUATING OUR WEBSITE AND ALL OF OUR EDUCATIONAL MATERIALS TO MAKE SURE THEY REFLECT THE LATEST INFORMATION WE HAVE AND THE BEST INFORMATION WE HAVE. SPECIFICALLY IN TERMS OF THE APP I DON'T KNOW IF YOU WERE DIRECTING THAT QUESTION RELATED TO THE APP IN PARTICULAR, BUT WE DO HAVE A CONTRACT IN PLACE THAT WILL CONTINUALLY WORK TO IMPROVE THE APP OVER TIME. WE ALL KNOW HOW MANY DIFFERENT VERSIONS OF APPS WE ALL GET AND WE ARE COMMITTED TO MAKING IT THE BEST APP IT CAN POSSIBLY BE AT ANY POINT IN TIME AND HAVE SOME RESOURCES DEDICATED TO DOING SO. >> THANK YOU. DR. DANIELS HAS A QUESTION, ALSO. >> CAN YOU TELL US ABOUT HOW LEARN THE SIGNS EARLY INTERACT INTERACTING WITH BIRTH TO FIVE, WATCH ME THRIVE. >> SO BIRTH TO FIVE WATCH ME THRIVE IS A COORDINATED PROMOTING UNIVERSAL DEVELOPMENTAL COMMUNITY-BASED REFERRAL AND SUPPORT. SO LEARN THE SIGNS ACT EARLY, HAS BEEN A KEY MEMBER OF BIRTH TO FIVE WATCH ME THRIVE INITIATIVE SINCE ITS INCEPTION AND ADDRESSES ONE OF THE CRITICAL COMPONENTS OF THE BROADER EFFORT, THE PARENT EDUCATION AND ENGAGEMENT AX ROUND EARLY CHILDHOOD DEVELOPMENT COMPONENT BEFORE AND AFTER DEVELOPMENTAL SCREENING. AND LEARN THE SIGNS, ACT EARLY, EDUCATIONAL RESOURCES FOR FAMILIES AND CARE PROVIDERS PROMOTE AND ENHANCE THE DEVELOPMENTAL MONITORING THAT ARE A COMPLEMENT TO, BUT THEY'RE NOT A REPLACEMENT FOR THE DEVELOPMENTAL SCREENING. AND THE RESOURCES OF LEARN THE SIGNS ACT EARLY ON ARE PROMOTED AS PART OF THE BIRTH TO FIVE, WATCH ME THRIVE INITIATIVE. >> THANK YOU, DR. BIANCHI. >> HI, STEWART--STUART, BUT IS THE INTENT TO USE THIS AS A VEHICLE TO BRING IT TO THEIR PEDIATRICIAN OR KEEP A PERSONAL RECORD OR WILL CDC OR OTHER PEOPLE USE THE INFORMATION FOR THEIR RESEARCH? >> SO I DON'T BELIEVE THAT CDC COLLECTING DATA FROM OR WOULD COLLECT DATA FROM THE APP AND KATIE CAN CORRECT ME IF I'M WRONG. I HAPPENING--THINK THIS IS DESIGNED FOR PARENTS TO FOLLOW THEIR CHILD'S DEVELOPMENT, TO GET ESSENTIALLY GOOD REPORTS IF THEIR CHILD IS MEETING EXPECTED MILESTONES AND THEN GETTING ALERTS IF THEIR CHILD DOES NOT SEEM TO BE MEETING EXPECTED MILESTONES AND INFORMATION ON WHAT TO DO IN THOSE CIRCUMSTANCES, AND THE APP PROVIDES THE STUDENT TO E-MAIL THE SUMMARY REPORTS TO THEIR HEALTHCARE PROVIDER AND TO BRING TO THEIR HEALTHCARE PROVIDER, PROVIDER,--THEIR CONCERNS SO THAT FORMAL DEVELOPMENTAL SCREENING CAN OCCUR. BECAUSE THIS IS DEVELOPMENTAL MONITORING, IT'S NOT DEVELOPMENTAL SCREENING. AND IT WILL ALSO GIVE ALERTS WHEN DEVELOPMENTAL SCREENING SHOULD OCCUR DURING THE PEDIATRIC TIME FRAME AS HAS BEEN RECOMMENDED BY THE AMERICAN ACADEMY OF PEDIATRICS. IS THAT RIGHT, KATIE? THAT CDC DOES NOT PLAN TO PULL DATA FROM THE APP AND COLLECT IT? >> THAT IS CORRECT. THAT IS CORRECT. WE WILL SEE INFORMATION IN THE AGGREGATE FORM IN TERMS OF USAGE OF THE APP BUT THAT'S ABOUT IT. >> THANK YOU. OTHER COMMENTS OR QUESTIONS? ALL RIGHT. WE'LL MOVE TO THE NEXT PHASE. THANK YOU VERY MUCH DR. SHAPIRA. SO WE NOW TURNING TO THE SUMMARY OF ADVANCES DISCUSSION THAT SUSAN'S GOING TO LEAD. SO I'M STARTING OFF AND THEN I WILL OF COURSE TURN IT BACK OVER TO YOU. WE WANTED TO TALK ABOUT THE REVISED PROCESS THAT WAS USED TO DEVELOP THE 2016 IACC ADVANCED WHICH YOU HAVE IN FRONT OF YOU ON THE DESK. WE REVISED THE PROCESS IN THE PAST YEAR TO ISSUE REQUESTS FOR NOMINATIONS THROUGHOUT THE YEAR INSTEAD OF ONCE A YEAR SO WE SEND YOU MONTHLY REQUESTS, ASKING FOR NOMINATIONS. THIS WAS JUST TO,A VOID HAVING TO DO IT ALL AT THE END OF THE YEAR AND SO PEOPLE COULD GET REMINDERS THROUGHOUT THE YEAR, REQUIRING SUBMISSION OF A JUSTIFICATION WITH EACH NOMINATION, AND HAVING THE NOMINATIONS DISCUSSED AT EACH MEETING AND THEN, USING EACH MEETING TO HELP ELIMINATE AND NARROW DOWN THE FINAL ITEMS INCLUDED ON THE BALLOT IN JANUARY. SO OARC DID A SURVEY TO GATHER INFORMATION ABOUT HOW YOU FELT ABOUT THE PROCESS WE USED LAST YEAR AND IF WE NEEDED TO MAKE IMPROVEMENTS. SO I WILL TURN IT OVER TO KAREN MOWRER A SCIENCE POLICY ANALYST IN MY OFFICE WHO CAN TELL US ABOUT SURVEY. >> OKAY, I WILL DO A BRIEF REVIEW OF THE RESULTS OF THE SURVEY WE SENT OUT TO COLLECT FEEDBACK FROM YOU ALL. UP THERE ON THE SCREEN, YOU SEE JUST AS A REMINDER, THOSE ARE A BRIEF SURVEY, THOSE WERE THE SIX QUESTIONS INCLUDED TO GAUGE YOUR FEEDBACK ON HOW THE PROCESS WENT AND AS YOU CAN SEE, WE HAD 11 COMMITTEE MEMBERS RESPOND AND THERE WITH THE POSITIVE RESPONSES WERE IN FAVOR OF THE PROCESS, YOU CAN SEE THAT THE RESPONSE WAS OVERWHELMINGLY POSITIVE. WE HAD ONE RESPONDER WHO WAS NOT SATISFIED WITH THE PROCESS, AND SEEMED TO BE PREDOMINANTLY CONCERNED WITH FEELING THAT THE ARTICLES WERE SCIENTIFICALLY SIGNIFICANT ENOUGH AND THAT THEY WERE NOT IN FAVOR OF CONTINUING WITH THE PROCESS AGAIN IN THE SAME WAY FOR 2017.& BUT EVERYONE ELSE SEEMED TO BE IN FAVOR OF HOW WE DID IT WITH MAYBE SOME MINOR TWEAKS. >> SO TO REVIEW, THE PROCESS THAT WE'RE THINKING OF GOING FORWARD WITH FOR 2017 EXPW ALSO TO HIGHLIGHT A COUPLE OF POINTS WE MIGHT WANT TO DISCUSS HERE, AS A REMINDER, YOU RECEIVE A MONTHLY SOLICITATION FROM A SUMMARY OF ADVANCES, E-MAIL ACCOUNT THAT ASKS YOU ALL TO SEND IN ANY NOMINATED ADVANCE SAYS FROM THE PREVIOUS MONTH SO THAT COMES OUT THE FIRST OF EVERY MONTH AND IS ASKING FOR ADVANCES FROM THE PREVIOUS MONTH. SO WE FOUND THAT WE DON'T TYPICALLY IN ANY GIVEN MONTHLY REMINDER GET A WHOLE LOT OF RESPONSES SO ONE THING WE COULD DISCUSS IS THE FREQUENCY OF THAT E-MAIL AND IF YOU FEEL THAT'S AN EFFECTIVE WAY TO SERVE AS THAT REMINDER, WE ALSO AS WAS MENGSZED ASKED FOR A FEW MENTIONED, ASKED FOR JUSTIFICATIONS OF YOUR NOMINATIONS AND WE DON'T OFTEN WE CEIVE THOSE BUT INITIALLY WITH THE NOMINATION SO WE CAN DWIS CUSS--DISCUSS THAT IS SOMETHING YOU FEEL IS USEFUL. I KNOW A COUPLE YOU INDICATED YOU THOUGHT IT WAS HELPFUL TO HAVE THAT WRITTEN JUSTIFICATION AS A REMINDER. WE COMPILED THE ADVANCES THAT ARE NOMINATED QUARTLY AND HAVE A TIME--QUARTERLY AND HAVE A SIEM SET ASIDE FOR DISCUSSION AND ONE THING THAT'S BEEN BROUGHT UP AND DOING MORE THOROUGH VETTING DURING EACH MEETING SIMILAR TO WHAT WE DID AT END OF THE PROCESS FOR LAST YEAR AT THE JANUARY MEETING AND THE PLAN IS TO TRY AND DO THAT THE AT MEETING TODAY. THEN SIMILARLY TO LAST YEAR, WE WOULD SEND OUTLET--OUT THE FINAL NOMINATION LIST FOR VOTING IN JANUARY BY E-MAIL BALLOT. WE COUNT THE VOTES DO A TIE BREAKER IF NECESSARY, THEN ONCE THE ARTICLES ARE--THEN PREPARE THE SUMMARIES AND CIRCULATE THAT TO YOU ALL FOR FINAL RELEASE AND PUBLICATION FOR EARLY RELEASE IN APRIL. >> THANKS KAREN SO ARE THERE ANY COMMENTS ON ANY OF THIS? DO PEOPLE HAVE SUGGESTIONS? LUIS? >> I GUESS I WOULD SAY ABOUT A SURVEY THAT GOT A MINORITY RESPONSE AND I WAS PROBABLY ONE OF THE SILENT ONES AND I PROBABLY WOULD HAVE BEEN A DISSENTER. >> I BELIEVE WE SENT IT OUT MORE THAN ONCE, WAS IT THREE TIMES. >> IT DOES BOTHER ME WHEN YOU DON'T HAVE A MAJORITY OF RESPONSE. THE SECOND THING IN TERMS OF--I WOULD ACTUALLY ENCOURAGE PROBABLY SENDING THE E-MAIL ASKING FOR NOMINATIONS MUCH MORE FREQUENTLY, PEOPLE READ THEIR PAPERS, CATCH THEIR ATTENTION THAT'S THE TIME THEY'RE LIKELY TO NOMINATE THEM. EVEN A MONTH LATER IT'S FADED INTO THEIR LONG-TERM DISMEMORY IN MANY CASES. AND SO I THINK, AS A PRACTICAL SUGGESTION, I THINK YOU MIGHT GET MORE NOMINATIONS IF THESE E-MAILS CAME MORE OFTEN. >> SO WE'RE DOING THEM MONTHLY NOW. WOULD YOU WANT IT EVERY OTHER WEEK AND AT WHAT POINT WOULD PEOPLE JUST START KOAM PLETELY IGNORE THE E-MAILS BECAUSE THEY'RE BORING AND FILL UP YOUR INBOX? >> I UNDERSTAND THERE MAY BE A RISK BUT-- >> LET'S SEND IT TO HIM WEEKLY. THERE ARE OTHER THOUGHTS? >> THANK YOU. YOU KNOW I'M WONDERING IF USING YOUR RESOURCES IN YOUR OFFICE SUSAN, YOU COULDN'T SEND AN E-MAIL OUT WHERE YOU'VE DONE KIND OF A SEARCH AND HAVE A LIST OF THINGS THAT HAVE COME OUT THAT MONTH OR HOWEVER OFTEN THAT ARE, YOU KNOW THAT HAVE AUTISM AS A TOPIC OR A FOCUS AS JUST A SUGJUSTION. I DON'T KNOW HOW DIFFICULT IT WOULD BE TO DO A SEARCH OF JOURNALS BUT YOU KNOW--AND THEN PEOPLE HAVE SOMETHING IN FRONT OF THEM. I KNOW WHAT HAPPENS IN MY OFFICE AND IT'S LIKE, I HAVE SOMEONE I TEND TO SAY, CAN YOU GO LOOK FOR SOMETHING. AND MAYBE IF THE UNIVERSE WAS INITIALLY KIND OF, YOU KNOW DEFINED AND THEN PEOPLE CLEARLY CAN GO BEYOND IT, IT MIGHT GET MORE RESPONSES. I DON'T KNOW. >> I THINK THE ONLY CONCERN I WOULD HAVE IS THAT PEOPLE MAY NOT BE AWARE OF ALL THE DIFFERENT FIELDS THAT YOU ALL ARE EXPERTS IN AND YOU MIGHT RECEIVE A LIST FROM US THAT'S BIASED TOWARD WHAT WE KNOW ABOUT AND I DON'T KNOW IF PEOPLE WOULD FEEL LIKE YOU COULD STILL NOMINATE OTHER THINGS BUT IF YOU WOULD FEEL THIS IS BIASING YOU OR YOU KNOW WE WOULD HAVE CONCERNED ABOUT NOT A FAIR REPRESENTATION OF EVERYTHING. I DON'T THINK WE COULD--THERE'S PUB MED WHICH IS VERY COMPREHENSIVE FOR BIOMEDICAL RESEARCH AND THERE ARE OTHER DATABASES FOR OTHER KINDS OF RESEARCH. >> OKAY, SO IF YOU DO A PUB MED SEARCH ON AUTISM, YOU GET 2000 PUBLICATIONS ALREADY IN 2017. SO IT WOULD REQUIRE A LOT OF CURATION, ACTUALLY. >> JERRY? >> WELL, I DON'T THINK IT'S A PERFECT PROCESS AND I DON'T KNOW HOW WE CAN IMPROVE ON IT. I THINK WE ALL HAVE TO FORCE OURSELVES TO BE GOOD CITIZEN AND IF WE'RE EXCITED ABOUT A PAPER, TRY TO REMEMBER TO SEND IT IN. THE ONLY OTHER THING I COULD THINK OF WOULD BE WE MIGHT WANT TO HIGHLIGHT VERY HIGH PROFILE JOURNALS. SO IF SOMETHING GOT INTO JAMMA OR NEUROGENRATIVE SCIENCE OR JUST NATURE. NEW ENGLAND JOURNAL OF MEDICINE AND OTHER JOURNALS THAT WE REALLY KNOW SET A HIGH BAR IN TERMS OF THE QUALITY, IT MIGHT BE GOOD TO AT LEAST CAPTURE THOSE BECAUSE I DON'T THINK THERE'S--UNFORTUNATELYY AS MANY OF THOSE. >> YOU MEAN BY OUR OFFICE OR JOURNALS-- >> NO AS A GROUP. >> I DON'T WANT TO PUT MORE WORK ON YOU BECAUSE YOU'RE SO, SO BUSY BUT THAT WOULD BE ONE WAY TO THINK ABOUT IF YOUR OFFICE WANTED TO LOOK THROUGH THINGS THAT'S WHERE I WOULD START. >> HOW DO YOU FEEL ABOUT OARC HAVING A BIGGER ROLE IN TRYING TO TELL YOU WHAT KINDS OF THINGS YOU MIGHT WANT TO NOMINATE. BECAUSE THE WAY WE DEVELOPED THE PROCESS WAS FOR IT TO COME FROM THE COMMITTEE AND SO, YOU KNOW WE JUST WANT TO BE SURE THAT'S' WHAT YOU WOULD REALLY LIKE TO DO. BRIAN? >> SO ANOTHER APPROACH FOR THAT MIGHT BE FOR OARC, IF YOU ARING TO ACCEPT NOMINATIONS ON AN ADHOC BASIS, SO IF WE'RE READING A PAPER THAT'S PARTICULARLY NOTE WORTHY, WE COULD SEND AN E-MAIL AND SAY THIS IS REALLY GOOD AND THIS IS WHY. >> I DID MENTION THAT, EVERYONE MOSTLY KNOWS MY E-MAIL ADDRESS, IF YOU ARE READING SOMETHING AND YOU LIKE IT, YOU CAN SEND TO ME, JOSH AND SHOULD OTHER PEOPLE HAVE DONE THAT BEFORE SO I WOULD FORWARD IT OVER TO THE E-MAIL AND RECORD IT SO YOU DON'T HAVE TO WAIT FOR THE MONTHLY E-MAIL. YOU CAN JUST LET US KNOW. >> I HAD EVERY COUPLE OF WEEKS I GET A LIST FROM THE SPECTRUM WEB TEAM OF PAPERS THAT ARE COVER, YOU KNOW WE COULD CERTAINLY SHARE IF IT WOULD HELP. YOU COULD IGNORE THEM OR NOT BUT THEY DO GO THROUGH THE 2000 PAPERS. >> RIGHT. SO WE TALKED ABOUT THAT TOO OF NOMINATING THINGS ON BLOCKS. SO A LOT OF ORGANIZATIONS ARE TRACKING THINGS BUT IF WE BRING EVERYTHING THAT EVERY ORGANIZATION IS TRACKING FOR VARIOUS PURPOSES, IN, I DON'T FINISH THAT MAKE ITS EASIER BECAUSE PART OF OUR GOAL IS TO NARROW DOWN TO THE TOP QUALITY BASED ON THE CRITERIA OF THE IACC. IF SOMEBODY SENDS US A BLOCK OF 20 PAPERS, THAT JUST GETS ADDED ON TO THE LIST TO NARROW DOWN. I DON'T KNOW IF THAT HELPS US. OR DOES IT? SO IF YOU SEE THINGS THAT ARE ON THE LIST THAT YOU REALLY LIKE, MAYBE IT WOULD BE BETTER TO TELL US ABOUT THOSE ONES. SO I GUESS BASED ON THIS DISCUSSION, IT SOUNDS LIKE WE MAYBE SHOULD JUST CONTINUE THE FREQUENCY OF THE CURRENT E-MAILS LETTING EVERYONE KNOW YOU CAN ALWAYS E-MAIL AS YOU READ A PAPER. IT DOESN'T TAKE TOO MUCH TIME IF YOU GET AN ARTICLE IN YOUR INBOX YOU COULD E-MAIL IT AND SAY SUMMARY OF ADVANCES AND THAT'S ENOUGH TO GET IT IN AND SOUNDED LIKE NOBODY HAD ANY OBJECTION TO US DOING THE NARROWING ALL THE WAY THROUGH THE YEARS SO WE DON'T HAVE TO DO EVERYTHING IN JANUARY. SO I THINK WITH THAT UNLESS THERE'S ANYTHING ELSE WE CAN DISCUSS WE CAN PROCEED AT LOOKING AT THE NOMINATIONS WE RECEIVED. OH AND SORRY, THE JUSTIFICATIONS. THANKS KAREN. AND WITH THE JUSTIFICATIONS, DO YOU WANT TO CONTINUE WITH THAT? I KNOW THAT THAT PUTS MORE PRESSURE ON SENDING THINGS. YOU CAN'T JUST FORWARD THE ARTICLE WITHOUT WRITING ANYTHING, IF YOU NEED A JUSTIFICATION, DO YOU WANT TO& KEEP DOING THAT OR NOT WANT TO CONTINUE WITH IT BECAUSE I KNOW SOMETIMES, YOU KNOW PEOPLE FEEL LIKE THEY HAVE THE TIME TO SEND THE ARTICLE BUT THEY DON'T REALLY HAVE TIME TO DO THE JUSTIFICATION. ALLISON? >> I THINK JUSTIFICATIONS ARE VERY UPON HELPFUL ESPECIALLY GIVEN THERE'S A WIDE RANGE OF EXPERTISES IN THE AREAS THAT ARE OUTSIDE YOUR PARTICULAR KNOWLEDGE SET, IT'S USEFUL TO HAVE THOSE EXPLANATIONS. >> PLUS, I THINK LAST TIME OR TWO TYPES AGO, THERE WAS QUITE A DISCUSSION WE HAD ABOUT THE IMPORTANCE OF INSURING THAT THESE PAPERS HAVE RIGOR AND IMPORT TO THEM EVEN AT THE NOMINATION PROCESS AS OPPOSE TO THE VOTING PROCESS IN JANUARY AND WITHOUT THAT JUSTIFICATION IT'S HARD AND I WOULD ALSO LIKE TO SUGGEST JUST LOOKING OVER THE SUOF THE JISKSS HERE THAT ESPECIALLY FOR THE CLINICAL TRIALS, ACTUALLY I TAKE THAT BACK, FOR EVERYTHING, PUT IN THE ENDS SO THAT WE KNOW HOW TO JUDGE THE SIZE BECAUSE MORE AND MORE WE'RE LEARNING THAT OUR STUDIES ARE UNDERPOWERED AND I TOOK IT BACK ABOUT CLINICAL BECAUSE IT'S ABSOLUTELY TRUE OF PRECLINICAL STUDIES AS WELL. SO FOR US TO GET AN APPRECIATION FOR HOW BIG THE STUDIES WILL HELP US JUDGE THEIR IMPACT. OKAY SO WITH THAT WE HAVE RECEIVED NOMINATIONS. YOU ALL HAVE IT IN YOUR FOLDER. I HAVE SOME CONCERNS BASED ON SOME OF THOSE ISSUES FOR SOME OF THESE NOMINATIONS. I'M HAPPY TO DESCRIBE THEM. AND THEN I WILL OPEN IT UP FOR OTHERS AS WELL. DR. KOROSHITZ, WHO IS NOT HERE TO DEFEND IT IS THE IMMUNE O REACTIVITY FOR HSV TWO, THE STATISTICS ARE ABOMINABLE AND THERE IS NO JUSTIFICATION FOR THE CLAIMINGS SO I WOULD SUGGEST WE NOT INCLUDE IT--I SEE LOUIS, IF THERE'S OBJECTIONS I DON'T MEAN TO JUST BECAUSE I'M CHAIR HAVE MY OPINION GO FIAT. OKAY, SHAFSA ET AL, I HAVE PROBLEM WITH THAT BECAUSE IT'S AN ANIMAL STUDY AND I'M SURE HOW WELL--THE ASD BEHAVIORS ARE VERY DIFFICULT TO STUDY TO TRANSLATE AND WITHOUT A NEUROBIOLOGY I'M NOT THAT ENTHUSIASTIC ABOUT IT. I'M NOT SAYING RESULTS ARE NOT VALID BUT I DON'T SEE IT AS A MAJOR ADVANCEMENT. AND THAT WAS ALSO BY WALTER, UNABLE TO DEFEND HIMSELF. THERE WAS A PAPER GERALDINE THAT YOU PROPOSED ON TRANSMAGNETTIC STIMULATION THAT'S MORE OF A PROTOCOL PROPOSAL AS OPPOSE TO DATA SO I WOULD SUGGEST--YEAH, OKAY. AND THEN ANOTHER KOROSHETZ, KEY TO DIETS ANOTHER REASON, SIMILAR IT'S A ANIMAL STUDY, AND THIS MIGHT INSPIRE CHILDREN TO PUT THEIR CHILDREN ON KETOGENIC DIETS AND I DON'T KNOW THAT WE HAVE THE DATA FOR IT. LOUIS? >> I THINK YOU SKIPPED ONE THE STADTSMAN'S PAPER HAS BEEN CHALLENGED FOR STATISTICS. THE SETHNA--IT'S WALTERS. >> STETHNA PAPER. >> IT'S CLEAR THE STATISTICS WERE FLAWED, THEY'VE ACAGED IT AND REDONE IT BUT THERE JUST A QUESTION WHETHER WE SHOULD BE FEATURING SOMETHING. >> WE NEED TO GIVE WALTER A STATISTICS LESSON. YES, I KNOW, I KNOW IS THERE ANY DISSENT TO THAT? OKAY, WE WILL REMOVE THAT AS WELL. ANY OTHER ARTICLES THAT CAME TO ANYONE'S ATTENTION THAT WE MIGHT CONSIDER. REMEMBER THAT WE'RE NOT SAYING THESE ARE THE ADVANCES WE'RE GOING TO ENDORSE, THESE ARE JUST NOMINATIONS THAT WE REVIEW AT EACH MEETING AND IN JANUARY, OR THE MEETING AROUND THEN, WE PICK THE ONES THAT ARE MOST IMPACTFUL. >> THE ONE THAT I ALSO--I MEAN I THINK I DID FOUR, BUT ONE OF THEM WAS FROM A STUDY THAT SARAH WEBB AND EMILY JONES AND I AND OTHERS DID WHICH HAS IT'S THE TREATMENT SAMPLE IS RELATIVELY SMALL ALTHOUGH WE DID HAVE A COMPARATIVE NORMATIVE SAMPLE OF 150 INFANTS BUT I WOULD BE--IT WAS VERY NOVEL IN ITS APPROACH. SO I WOULD BE TOTALLY COMFORTABLE SAYING, LOOK, IT'S TOO SMALL. I PUT IT IN JUST BECAUSE IT WAS SOMETHING NEW THAT HADN'T BEEN DONE. SO ANYWAY, I'M JUST SAYING DON'T FEEL THAT--DON'T FEEL AWKWARD ABOUT SAYING THAT THE SAMPLE IS TOO SMALL ON THAT ONE. >> HOW SMALL IS IT? >> WELL SO, IT WAS 33 INFANTS, HIGH RISK INFANTS WERE RANDOMIZED AND SO THERE WAS 19 TREATED PRESYMPTOMATICALLY AND LOOKED AT BRAIN MEASURES AND WE HAD A COMPARISON GROUP. >> YES, ALLISON? >> CAN SOMEONE EXPLAIN THE VITAMIN D STUDY, BECAUSE THERE'S NO DESCRIPTION SORE SUMMARY. >> WHAT PAGE? >> IT'S AT THE TOP OF PAGE FIVE,. >> GESTATIONAL VITAMIN D GENERATION R STUDY. >> I THINK RUTH WILLFUL. >> I THINK RUTH'S COMMENT, ADDITIONAL STUDIES ARE NEEDED TO EVALUATE THIS INTERESTING ASSOCIATION MIGHT SPEAK FOR ITSELF. BUT AGAIN, RUTH IS NOT HERE TO DEFEND HERSELF ALTHOUGH SHE WAS ONE OF THE VOICES FOR INCREASED RIGOR SO I THINK SHE WOULDN'T MIND IF WE PUT A NIX ON IT. >> I AM NIXING THAT AND RUTH CAN RENOMINATE IT OR CONTEST IT. WE WILL CALIFORNIA BACK TO HER ABOUT THAT. ANYTHING ELSE? OKAY, SO WE'LL PUT THE REST OF THEM,--I CAN GIVE THIS TO YOU. EXCELLENT. >> INJURY PAPER. THERE'S A QUESTION ABOUT INJURY AND MORTALITY AND INDIVIDUALS WITH AUTISM. >> [MIC NOT ON ] >> OKAY, SO THERE'S CONCERNS ABOUT THE COMPARISON GROUPS WHICH I RAISED AND I DON'T EVEN REMEMBER. SO SHOULD WE SAY BRIEF COMPARISON REPORT AND NIX IT. IN THAT ONE I'M NIXING MY OWN NOMINATION. ANY DISSENT ABOUT THAT ONE? ALL RIGHT. SO WE'LL MOVE FORWARD, ANYTHING ELSE ABOUT SUMMARY OF ADVANCEMENTS. OKAY, WELL, LOOK AT THAT BEHIND BY 10 MINUTES AND NOW AHEAD BY 15 WHICH IS GOOD FOR VERY SELFISH REASONS, I TO LEAVE TO TAKE A FLIGHT AT 4:45 SO HOPEFULLY WE WILL GET DONE WITH THE ROUND ROBIN, AND I WON'T MISS ANYONE'S CONVERSATIONS. BUT I WILL TAKE CHAIR PREROGATIVE AND WE WILL GO AROUND THE TABLE AND PRESENT EVENTS, OR EXCITING THINGS FOR THE TABLE TO KNOW ABOUT AND THE PUBLIC TO KNOW ABOUT AND THE REST OF THE COMMITTEE TO KNOW ABOUT. WE WILL GO IN THIS DIRECTION, HOW ABOUT THAT. SORRY ABOUT THAT. SO, JUST BRIEFLY HAVE THREE THINGS THAT I THINK ARE RELEVANT TO WHAT--THAT NIMH IS WORKING ON THAT IS RELEVANT TO THE PRIORITIES OF THE IACC. FIRST AN UPDATE ON OUR SERVICES RESEARCH FOR ASD ACROSS THE LIFE SPAN, THE SURVEY ASD, PROJECT, WE AWARDED 12 GRANTS UNDER THIS PROGRAM FOR FISCAL YEAR 14. THIS IS THE ONE THAT SUPPORTS RESEARCH ON SERVICE DELIVERY AND STRATEGIES TO IMPROVE FUNCTIONAL OUTCOMES ACROSS THE LIFE SPAN. WE REISSUED TWO FUNDING ANNOUNCEMENTS TO TRY TO TARGET MORE OF THE TRANSITION AGE YOUTH IN ADULT POPULATIONS AND WE HAVE A NUMBER OF APPLICATIONS IN THAT WITH THE EXPECTED AWARD DATE TO COME SOON THIS YEAR. SO THAT PROJECT IS HUMMING ALONG AND I THINK WE DID GET MORE OF THE ADULT TRANSITION YOUTHANSITION APPLICATIONS THIS TIME AROUND WHICH WAS GOOD TO SEE. IN TEMPERATURES OF THE AUTISM SEQUENCING CONSORTIUM WHICH IS I PARTNERSHIP WITH THE NATIONAL HUMAN GENOME RESEARCH INSTITUTE WE AGREED TO CONTINUE OUR COLLABORATIVE AGREEMENT FOR ANOTHER FIVE YEAR GRANT PERIOD AND WE'RE TRYING TO SEQUENCE NOW 50,000 AUTISM SUBJECTS AND I THINK THAT PROBABLY IN COLLABORATION WITH SCIENCE IF NOT IN COMPETITION AND ALL DATA FROM THAT EFFORT ARE PUBLICLY AVAILABLE AS SOON AS WE CAN MAKE THEM. SO THROUGH OUR NATIONAL DATABASE, AS WELL AS THE DB GAP. AND THEN FINALLY OF INTEREST, I THINK TO THIS GROUP, IS THAT WE'VE ACTUALLY--IN DEVELOPMENTAL DEFERENCE TO THE COMPANIES THAT WERE MADE IN THE PUBLIC COMMENT PERIOD, WE ARE BEGINNING TO APPROACH A POST GENOMICS ERA IN THE SENSE OF WE'RE IDENTIFYING GENES FOR AUTISM OR AT LEAST THAT INCREASE RISK FOR AUTISM IS AS MUCH MORE ACCURATE WAY OF PUTTING IT AND THE QUESTION IS WHAT ON DO FROM A PRIORITY PERSPECTIVE OF THE NIMH AND WE CONVENED A WORK GROUP OF OUR NATIONAL ADVISORY COUNCIL TO HELP US DECIDE QUESTIONS THAT WERE ASKED LEGITIMATELY DURING THE PUBLIC COMMENT PERIOD. HOW MANY GENES ARE ENOUGH? WHEN DO WE STOP SEARCHING FOR GENES AND DEVOTE--OR AT LEAST SLOW DOWN IN THOSE EFFORTS AND PUT THE RESOURCES TOWARDS EXPLOITING THOSE GENES TO UNDERSTAND NEUROBIOLOGY AND BEHAVIOR AND DEVELOP NOVEL TREATMENTS. SO WE'RE ACTIVELY PUTTING OUR HEADS TOGETHER TO TRY TO ANSWER SOME OF THOSE QUESTIONS. WITH THAT I WILL TURN IT OVER TO MY COLLEAGUE. >> I WILL BE BRIEF. SO LET'S NOT THROW GENETICS OUT YET BECAUSE WE HAD A VERY INTERESTING TWO-DAY WORKSHOP YESTERDAY AND THE DAY BEFORE CELEBRATING THE 50th ANNIVERSARY OF THE INTELLECTUAL AND DEVELOPMENTAL DISABILITIES RESEARCH CENTERS OF WHICH THERE'S ALIGNMENT WITH THE INVESTIGATORS IN THIS ROOM AND WE HEARD THAT KURT'S STATE-OF-THE-ART IS THAT 40% OF CHILDREN WITH DEVELOPMENTAL DELAY ACTUALLY HAVE A GENETIC MECHANISM FOR THEIR DEVELOPMENTAL ISSUES. SO GENETIC TESTING IS IMPORTANT AND CAN DIRECT THERAPY. IT WAS A VERY EXCITING WORKSHOP, MULTIDISCIPLINARY AND BASICALLY I JUST WANT TO LET YOU KNOW THAT COMING OUT FROM IT. THERE WERE SOME SPECIFIC QUESTIONS DIRECTED AT THE GROUP. AND STAY TUNED. I THINK IT MIGHT BE SOMETHING YOU MIGHT WANT TO HEAR ABOUT AT THE NEXT MEETING. >> OKAY, I WANTED TO MAKE A FEW COMMENTS IN MY ROLE AS PRESIDENT OF THE INTERNATIONAL SOCIETY FOR AUTISM RESEARCH AND MOST IMPORTANTLY WE HAVE A MEETING COMING UP MAY 10th-13th IN SAN FRANCISCO AND I INVITE YOU ALL TO COME TO INFAR IF YOU HAVEN'T REGISTERED WITH THE SCIENTIFIC PROGRAM IT WAS ORGANIZED BY SUZANNE AND MATT. AND WE HAVE KEY NOTES BY PAT LEVIT, CONNIE KASP A KASP A KASSARY, AND OTHERS AND TOPICS ON HOW TO PROMOTE PARTNERSHIPS TO FAMILY AND RESEARCHERS TO USE OF TECHNOLOGY FOR SCREENING AND TREATMENT. SO I HOPE YOU WILL ALL COME. I ALSO WANTED TO MENTION THAT WE--A COUPLE OF YEARS AGO STARTED HAVING THESE REGIONAL MEETINGS WHICH ARE IN PLACES AROUND THE WORLD WHERE NSAR DOESN'T TYPICALLY HAVE A MEETING AND OUR NEXT ONE WILL BE IN SOUTH AFRICA, SEPTEMBER 7th -NINE, IN CASE YOU WANT TO COME TO THAT AND THATTEDDING LED BY PROFESSOR PETRIS DEVRIES, WITH A STRONG INFLUENCE ON CULTURAL INFLUENCE ON OUR UNDERSTANDING OF AUTISM AND ISSUES RELATED TO IMPLEMENTATION AND DISSEMINATION SCIENCE. AND FINALLY, I WANTED TO MENTION THAT NSAR NOW HAS A NEW MECHANISM THAT'S CALLED AN NSAR POLICY BRIEF, AND I THINK THIS REFLECTS THE MATURITY OF THE ORGANIZATION MOVING FROM JUST GATHERING INFORMATION, SCIENTIFIC INFORMATION THINKING ABOUT HOW TO TRANSLATE THAT INFORMATION INTO PRACTICE AND POLICY AND WE HAVE FUNDED OUR FIRST POLICY BRIEF WHICH MEANS WE BRING TOGETHER PEOPLE AS THOUGHT LEADERS TO CREATE A DOCUMENT THAT CAN BE USED FOR A VARIETY OF PURPOSES, IT IS GOING TO BE TAPPING THE TALENT AND IMPROVING EMPLOYMENT OUTCOMES FOR WITH AUTISM, IT'S HEADED UP BY ALICIA HOLIDAY, FROM THE FOUNDATION AND SONNIA SWEET AND SONNIA GIRDLER FROM AUSTRALIA SO LOOKING AT EMPLOYMENT FOR ADULTS ACROSS THE WORLD. >> I'LL FOLLOW UP ON A JOINT ACTIVITY OF NIEHS AND AUTISM SPEAKS. THIS WILL BE THE EIGHTH YEAR. WE WILL SPONSOR A ROUND A THREE HOUR MEETING ONE OF THE MEETINGS OF NFAR, THE ENVIRONMENTAL EPIDEMIOLOGY OF AUTISM RISK NETWORK OR E. A. R. N., THE ACRONYM, THIS BRINGS TOGETHER, I THINK LACHT YEAR WE HAD ABOUT 60 INDIVIDUALS THAT ARE INTERESTED AND ACTIVELY STUDIES RISK FACTORS, AT LARGE FOR AUTISM, A MAJOR FOCUS OF THE NETWORK OVER THE YEARS AS BEING--PROMOTING THE CAREER DEVELOPMENT OF YOUNG EARLY STAGE INVESTIGATORS, TRAINEES, PROVIDE A FORM FOR THEM TO INTERACT IN A MEANINGFUL WAY WITH MORE SENIOR ESTABLISHED EPIDEMIOLOGISTS AND WE HAD LAST YEAR, I THINK SOME TESTIMONIALS FOR SOME YOUNG INVESTIGATORS THAT YOU KNOW STARTED AS GRADUATE STUDENTS ATTENDING THOSE MEETINGS AND TALKED ABOUT HOW HELPFUL IT HAD BEEN USUALLY INCORPORATE A BRIEF POSTER SESSION, THIS YEAR WE'RE HAVING A SPEED DATING EXERCISE AND LIGHTNING TALKS AND THEN THERE'S NORMALLY AN EDUCATIONAL PIECE WHERE WE BRING IN A SPEAKER. THIS YEAR WE'RE HAVING INTERNAL DISCUSSION AROUND--THAT ADDRESSES THIS IDEA OF HETEROGENEITY AND SPECIFICITY OF RISK FACTORS AND WE'RE ALSO, I BELIEVE CONSIDERING HOW TO EXPAND INTO MORE OF AN INTERNATIONAL FORUM, ESPECIALLY GIVEN THAT NEXT YEAR'S MEETING IS INTERNATIONAL. SO IT'S BEING INCREDIBLY SUCCESSFUL, NIEHS PROVIDES LIMITED TRAVEL SCHOLARSHIPS TO YOUNG EARLY STAGE INVESTIGATORS AS WELL. SO THIS YEAR, I THINK WE WILL MAKE 11 TRAVEL AWARDS. . >> LET'S SEE, I WILL SAY THAT GIVEN THE INSTITUTE THAT I'M SOCIETIED WITH, OBVIOUSLY THE RESEARCH WE SUPPORT IS FOCUSED ON COMMUNICATION, DISORDERS, COMMUNICATION ABILITIES AND DEFICITS AND CHALLENGES AND INDIVIDUALS WITH AUTISM. WE DON'T HAVE ANY SPECIAL INITIATIVES RELATED TO THAT BUT I THINK THE ENCOURAGING THING IS THAT WE'RE SEEING APPLICATIONS COMING IN AT ALL LEVELS OF AN INDIVIDUAL'S CAREER PATH FROM PREDOCS AND POST DOCS TO EARLY STAGE INVESTIGATORS ALL THE WAY UP TO SENIOR INVESTIGATORS WHO ARE NOW TURNING THEIR ATTENTION TO LOOKING AT LANGUAGE AND COMMUNICATION BOTH IDENTIFICATION, INTERVENTION AND THE CHALLENGES THAT SOME'VE THESE INDIVIDUALS, PARTICULARLY INDIVIDUALS WHO ARE MINIMALLY VERBAL AND WE ALSO SUPPORT A CONFERENCE REAL SIMILAR TO WHAT CINDY WAS TALKING ABOUT THAT'S THE MAJOR CONFERENCE IN CHILD LANGUAGE DISORDERS AND I'VE SEEN OVER THE LAST THREE, FOUR, FIVE, YEARS THAT THE FOCUS HAS SHIFTED FROM CHILDREN WITH WHAT WE CALL SPECIFIC LANGUAGE DISORDERS, SPECIFIC LANGUAGE IMPAIRMENT TO CHILDREN WITH AUTISM. AND THE CHALLENGES THEY PRESENT. SO I GUESS WHEY WANT TO CONVEY IS THAT WE HAVE A LOT OF ATTENTION AND SUPPORT FOR TRYING TO UNRAFFLE THESE CHALLENGES. >> OKAY, SO THE SCIENCE FOUNDATION, I SHOULD SAY FIRST IN THIS COLLABORATION WITH NIMH, I MEAN WE RELEASED 500 WHOLE GENOME SEQUENCES TO THE SSC WILL SURELY RELEASE OORLGT ROUGHLY 500 WE EXPECT THE WHOLE SIMON SIMPLEX COLLECTION TO HAVE WHOLE GENOME SEQUENCING DONE BY THE END OF THE YEAR AND WE DO NOT EXPECT TO MAKE A LARGER COMMITMENT TO THE WHOLE GENOME SEQUENCING AND I SHOULD SAY IN HONESTY, WE THINK THE HIT VS BEEN RATHER MODEST AND WE'RE NOT--WE WOULD RATHER GO FOR NUMBERS THAN THE WHOLE GENOME. I THINK BIG NEWS I SHOULD SAY IS THAT THE SIMONS, IS ABOVE MY PAY GRADE DECIDED TO MAKE A FIVE YEAR 20 MILLION-POUND COMMITMENT TO THE UNIVERSITY OF EDINBOURGH, WHO IS BY PETER AND SIMON AND ADRIAN. WE COMMITTED TO MAKING A NUMBER OF RAT MODELS AND COLLABORATING WITH THEM TO DECIDE WHAT OTHERS AND WE EXPECT TO RUN ALL OUR MICE AND RATS THROUGH THEIR BEHAVIOR AND ALSO THROUGH THE BANGALOR FACILITY AND OUR SPARK, 50,000 GOAL AUTISM FAMILY PROJECT. I SHOULD SAY AT THIS POINT WE HAVE ROUGHLY 18,000 INDIVIDUALS WITH AUTISM, ABOUT 3000 OF WHICH ARE ADULT, 4600 TRIOS, WE'RE WELL ON TRACK TO HIT THE 50,000. THE DADS ARE A BIT OF A CHALLENGE, I SHOULD SAY. WE'VE SEEQUENCED--EXOHM SEQUENCED 460 OF THESE THROUGH OUR PILOT BUT WE WILL BE COMMITTED TO 30,000 MORE INDIVIDUAL SEQUENCES. SO WITH THE PRIORITY ON TRIOS DURING THE COMING YEAR. OUR RFA FOR THIS YEAR, REVIEWS ARE LARGELY IN AND WE WILL MAKE DECISIONS IN MAY. AND WE HAVE STARTED A NEW COLLABORATIVE GROUP OF THE NUMBER OF FACULTY OF M. I.T. ON THE THALAMALRITICK LUMNUCLEUS. >> I DON'T HAVE ANY UPDATES. >> OKAY. >> OKAY, SO, I MENTIONED THIS AT THE LAST IACC MEETING BUT I WANT TO REMIND PEOPLE THAT NEXT WEEK IS THE FDA'S PATIENT FOCUSED DRUG DEVELOPMENT MEETING FOCUSE ON AUTISM. IT'S ON THURSDAY, SIXTH ON FDA CAMPUS, ALL YOU HAVE TO DO IS GOOGLE PFDD, AND YOU CAN FIND THE PATIENT FOCUSED DRUG DEVELOPMENT WEBSITE, CLICK THROUGH THERE TO REGISTER. AT THIS POINT IN TERMS OF THE FOLK WHO IS REGISTERED FOR THE MEETING, IT'S LOOKING LIKE IT WILL BE A VERY PEDIATRIC FOCUSED MEETING SO I'M HOPING WE CAN GET MORE ADULTS ON THE SPECTRUM TO ATTEND THE MEETING AND PARTICIPATE SO THAT WE CAN HEAR MORE LIVED EXPERIENCE FROM INDIVIDUALS WHO ARE ABLE TO EXPRESS FOR THEMSELVES RATHER THAN HAVE THEIR PARENTS REPRESENT THEM SO AGAIN, THE THE WAY UP THROUGH THE THIRD.LL- SO IF FOLKS ARE INTERESTED JUST GOOGLE PFDD YOU CAN FIND IT FROM THERE. >> NO UPDATES FROM NINDS. >> SO ABOUT TWO MONTHS AGO THE AUTISM RESEARCH MECHANISM MET TO GO OVER FUNDING RECOMMENDATIONS OR TO CREATE FUNDING MECH MENDATIONS FOR FY16 SUBMISSIONS, THE PANEL DECIDED ON NINE DIFFERENT PROJECTS THREE WERE MORE FOCUSED ON OUR CLINICAL TRIAL AWARD MECHANISM AND THE OTHER SIX WERE HIGH IMPACT AND HIGH INNOVATIVE RESEARCH MECHANISM SO MORE TO COME ON THAT SINCE NEGOTIATIONS ARE NOW UNDER WAY, THOSE AWARDS HAVEN'T BEEN MADE YET BUT HOPEFULLY BY THE NEXT ROUND OR NEXT MEETING, I WILL HAVE MORE DETAILS ON THOSE PROJECTS. >> I DON'T HAVE ANY UPDATES RIGHT NOW. >> SINCE I'M A SELF-ADVOCATE AND I'M NOT WORKING, IT'S BEEN A YEAR AND A HALF I AND I STILL HAVEN'T FOUND A JOB, BUT I KNOW WE TALK A LOT ABOUT SERVES FOR ADULTS ON THE AUTISM SPECTRUM, I JUST WANT TO KNOW IF ANYONE KNOWS IF THERE'S A PROGRAM FOR INDIVIDUALS ON THE SPECTRUM, HOW TO KEEP A HOME AND A MORTGAGE EVEN IF YOU CAN'T KEEP A JOB LONG ENOUGH TO PAY THE MORTGAGE? I MEAN I DON'T WANT TO LOSE MY HOUSE, I JUST DON'T KNOW WHERE TO START? I JUST THOUGHT IF ANYBODY HAS ANY IDEAS WHERE TO START LOOKING? DOES ANYBODY KNOW ABOUT ANY REFINANCE PROGRAMS FOR PEOPLE WITH DISABILITIES? >> --MIGHT HAVE HAD RESOURCES. >> QUESTIONS ABOUT REFINANCE PROGRAMS FOR INDIVIDUALS WITH DISABILITIES SPECIFICALLY, AND I DON'T KNOW OF ANY. >> SUSAN DANIELS SUGGESTION THAT JENNIFER JOHNSON MAY KNOW OF SUCH THINGS AND SHE HAD TO LEAVE EARLY, SO PERHAPS FOLLOW UP WITH HER. SORRY ABOUT THAT. >> IT'S ALL RIGHT. I THOUGHT I WOULD ASK. >> IT'S A WORTHY QUESTION. >> AND I'M SURE IT'S NOT JUST YOU WHO HAS IT TO ASK. >> HELLO, THE AGENCY FOR HEALTHCARE RESEARCH AND QUALITY HAS TWO REPORTS THAT WE'RE HOPING TO GET OUT PRETTY SHORTLY. THEY'RE UPDATED SYSTEMATIC REVIEWS OF THE EVIDENCE IN CHILDREN AGE TWO-12. THE FIRST ONE IS ENTITLED INTERVENTIONS TARGETING SENSORY CHALLENGES IN CHILDREN WITH AUTISM SPECTRUM DISORDER AND THE SECOND REPORT IS ENTITLED MEDICAL THERAPIES FOR CHILDREN WITH AUTISM SPECTRUM DISORDER SO WE'RE HOPING THOSE WILL DEFINITELY BE OUT BEFORE THE NEXT MEETING. >> IF YOU WOULD SHARE THEM WITH US, THAT WOULD BE GREAT. >> OH YES, I WILL. >> THE DEPARTMENT OF EDUCATION HAS BEEN RUNNING COMPETITIONS AND PUBLISHING NEW GRANT PRIORITIES, HOWEVER, WE HAVE NO BUDGET SO WE'RE NOT GOING TO BE MAKING ANY ANNOUNCEMENTS UNTIL WE'RE ABLE TO WRITE THE CHECK AND WE HAVE NO IDEA WHAT THE OUTCOME OF THAT'S GOING TO BE FOR 2017. SO THAT'S WHERE WE'RE AT. >> SO FOR THE AUTISM SCIENCE FOUNDATION, NEXT MONDAY, WE WILL BE POSTING ALL OF THE VIDEOS FROM OUR ANNUAL AUTISM TED TALKS, THOSE WILL ALL BE AVAILABLE FOR FREE AND THEY INCLUDE VIDEOS FROM WENDY CHUNG, FROM THE SIMONS FOUNDATION, DAVID MANDELL, AMY WILL YOU TELL US, JAMIE Mc HARTLAND AND DONNA WHORLING, THIS FRIDAY WE WILL ANNOUNCE THE RECIPIENTS OF PREAND POST DOCTORAL FELLOWSHIPS. WE WILL BE ANNOUNCING NINE NEW AWARDS AND TWO WEEKS AGO, WE ANNOUNCED SIX UNDERGRADUATE FELLOWSHIPPINGS,--FELLOWSHIPS TO BE CONDUCTED IN RESEARCH LABORATORIES ACROSS THE COUNTRY AND FINALLY WE ARE CURRENTLY IN REVIEW OF ONE ROUND OF OUR ACCELERATOR GRANTS AND WE'RE ACCEPTING NEW APPLICATIONS FOR ACCELERATOR GRANTS. THOSE ARE DESIGNED TO LEVERAGE NOVEL FINDINGS OR MAKE A RAPID RESPONSE. SO WE IN TURN TRITE TO HAVE A RAPID RESPONSE TO THOSE APPLICATIONS. >> SO BRIEFLY REGARDING CDCs STUDY TO EXPLORE EARLY DEVELOPMENT OR SEED WHICH IS A CASE CONTROL STUDY EVALUATING GENETIC AND ENVIRONMENTAL RISK FACTORS FOR AUTISM SPECTRUM DISORDER, ALL OF THE APPROVALS FOR THE THIRD PHASE, IRB, OMB, AND SO ON HAVE BEEN COMPLETED SO THAT ENROLLMENT WILL START THIS SUMMER AND THEN, TENTATIVELY, WE HAVE ON THE SCHEDULE FOR OCTOBER AN UPDATE AND REPORT ON SEAT AT BECAUSE A LOT OF VERY FASCINATING REPORTS AND STUDIES HAVE BEEN WRITTEN UP AND ARE BEING SUBMITTED TO JOURNALS FOR PUBLICATION SO WE WOULD LIKE TO SHARE WITH THE GROUP WHAT'S BEEN GOING ON WITH THE RESEARCH AND THE PRIORITY AREAS FOR SEED. >> AND AS THE NEWBIE, I DON'T HAVE ANYTHING TODAY. THANK YOU. >> WELL, THANKS, IT WAS A TERRIFIC MEETING, WONDERFUL PRESENTATIONS AND HARD WORK BY OUR COMMITTEE AND WORKING GROUPS ON OUR STRATEGIC PLAN. FOLLOWING THIS MEETING, WE WILL BE WORKING IN OARC TO UPDATE THE REST OF THE CHAPTERS OF THE STRATEGIC PLAN AND BY MAY FIFTH IF YOU CAN GET US ANY FURTHER COMMENTS, WE WILL WORK ON THAT AND BE IN TOUCH WITH YOU BY EMAILING ABOUT FURTHER ACTIONS WITH THE GOAL OF GETTING YOU A FAIRLY FINAL DRAFT IN JULY HOPEFULLY TO APPROVE AND WE WILL BE BACK WITH PEOPLE ON THE BUDGET ISSUES AS WELL. >> SO I WANT TO THANK YOU ALL FOR COMING. I WANT TO THANK SUSAN FOR ORGANIZING THE MEETING TO THE EXTENT THAT YOU FOUND THE PRESENTATIONS AND DISCUSSIONS HELPFUL AND ILLUMINATING. IT'S SUSANS FAULT IT TOLET EXTENT YOU DIDN'T LIKE IT BLAME IT ON MY INTERFERENCE, THANK YOU VERY MUCH SUSAN AND I LOOK FORWARD TO SEEING YOU AND SUSAN'S STAFF OF COURSE. [ APPLAUSE ] >> THANK YOU.