WORKING HARD WITH OUR PARTNERS AND IN COLLABORATION HOW TO INCREASE TRAINING. WE HAVE OUR TELEBEHAVIORAL HEALTH CENTER FOR EXCELLENCE THAT PROVIDES CONSULTATION TO ALL IHS FACILITIES, TRIBAL AND URBAN FACILITIES TO BE ABLE TO ASSIST US IN MEETING THAT MISSION. SEE THANK YOU AND I'M HONORED TO BE A PART OF THIS. >> JOSHUA GORDON: THANK YOU AND WELCOME. ALSO DR. LAURA PIN COCK, A PHARMACIST, OFFICIALLY JOINED THE IACC IN JANUARY BUT DIDN'T HAVE A CHANCE TO INTRODUCE HERSELF. WHY DON'T YOU DO THAT. >> I WORK AT THE AGENCIES FOR HEALTH CARE RESEARCH AND QUALITY. A SMALL AGENCY IN THE DEPARTMENT OF HEALTH AND HUMAN SERVICES FOCUSING ON HEALTH CARE RESEARCH AS WELL AS QUALITY PROGRAMS, SAFETY INITIATIVES FOR HEALTH CARE SYSTEMS. I'M A PROGRAM OFFICER IN THE EVIDENCE-BASED PRACTICE CENTER RESEARCH AGENDA THAT WORKS ON SYSTEMATIC REVIEWS AND EVIDENCE THREATS WE PARTNER WITH FEDERAL PARTNERS AND OUTSIDE ORGANIZATIONS TO HELP INFORM GUIDELINES AND OTHER RESEARCH PROGRAM INITIATIVES. I'M A PHARMACIST AND A U.S. PUBLIC HEALTH SERVICE OFFICER, THAT'S WHY I WEAR A UNIFORM AND I'M VERY HAPPY TO BE HERE. SO THANK YOU. >> JOSHUA GORDON: WELCOME, ALSO. NOW I'LL TURN IT OVER TO SUSAN DANIELS FOR THE ROLL CALL. >> DR. DANIELS: SO WE ARE GOING TO HAVE THE ROLL CALL. JOSHUA GORDON. >> HERE. >> JUDITH COOPER. >> PRESENT. >> DIANA BIANCHI. >> HERE. >> LINDA BURN BALM. >> HERE. >> JOSIE BRIGGS RUTHETSEL. >> I'M HERE. >> STEPHANIE FARSHIONE. MELISSA HARRIS. JENNIFER JOHNSON. LAURA CAVANAUGH. >> HERE. >> MEAGAN MOT FOR WALTER KOROSHETZ. >> HERE. >> LAURA PIN COCK. >> HERE. >> MARCIE. >> PRESENT IN STEWART SHAPIRO. >> HERE. >> MELISSA SPENCER. >> HERE. >> LARRY WEXLER. >> HERE. >> NICOLE WILLIAMS. >> HERE ON THE PHONE. >> THANK YOU, NICOLE. DAVID. >> HERE. >> JIM BALL. >> HERE. >> SAMANTHA CRANE. JERRY DAWSON IS NOT GOING TO BE HERE TODAY. AMY GOODMAN IS NOT GOING TO BE HERE TODAY. DAVID MAN DELL. >> HERE. >> BRIAN PARNELL. KEVIN PAL FREE I KNOW IS ON HIS WAY. ED LIN PINA. >> HERE. >> LEWIS. >> HERE. >> ROB REIGN. >> ON THE PHONE. >> HI, ROB. >> MORNING. >> JOHN ROBINSON. >> HERE. >> ALISON SINGER IS NOT GOING TO BE WITH US, AND THIS IS HER FIRST MISSED MEETING IN ALL HER TIME ON THE IACC OVER MANY YEARS. JULIE TAILOR. >> HERE. >> GREAT. SO, WE ARE DONE WITH THE ROLL CALL UNLESS I MISSED ANYONE. ALL RIGHT. >> JOSHUA GORDON: SHOULD WE DO THE MINUTES? >> DR. DANIELS: YES. SO YOU HAVE IN YOUR PACKETS THE MINUTES FROM THE LAST MEETING THAT TOOK PLACE IN APRIL. DID ANYONE HAVE COMMENTS ON THE MINUTES? ANY CORRECTIONS? ALL RIGHT. CAN WE HAVE A MOTION ON THE FLOOR TO ACCEPT THE MINUTES IF THERE ARE NO 90s SO MOVED. >> ALL IN FAVOR OF ACCEPTING THE MINUTES AS WRITTEN. ANY OPPOSED? OR ANY ABSTAINING? SO, THE MOTION CARRIES TO ACCEPT THE MINUTES AND WE WILL GET THEM POSTED ON THE WEB AS SOON AS POSSIBLE AFTER THE MEETING. THANK YOU. >> JOSHUA GORDON: THANK YOU, ALL. JUST A QUICK REMINDER TO PLEASE, WHEN YOU SPEAK, SNEAK INTO THE MICROPHONES BECAUSE THIS MEETING IS WEBCAST TO THE PUBLIC. AND SO MAKE SURE THAT YOUR REMARKS AND QUESTIONS WILL BE HEARD BY ALL. WE HAVE A BUSY SCHEDULE FOR THE DAY AS USUAL. WE ARE GOING TO HEAR FROM THE NATIONAL AUTISM ASSOCIATION, FROM THE INTERACTIVE AUTISM NOTE WORK ON MORALITY AND RISK AND WANDERING. WE ARE GOING TO COMPLETE SOME COMMITTEE BUSINESS IN TERMS OF GETTING THE STRATEGIC PLAN. HOPEFULLY FINALIZED AND APPROVED. WE'LL SEE. AND THEN, WE'LL HAVE A PUBLIC COMMENT SESSION. AND THEN WE'LL HEAR FROM THE MADISON HOUSE AUTISM FOUNDATION AND THEN WE'LL HAVE OUR DISCUSSION OF THE SUMMARY OF THE ADVANCES AND A ROUNDING ROBIN AROUND THE TABLE. A QUICK NOTE. I APOLOGIZE IN ADVANCE. I HAVE TO RUN OFF FOR A MEETING AT 3:00 MYSELF WITH SOME HIGHER UPS IN HHS. SO, I'M GOING TO BE LEAVING AT 2:45 OR SO AND COMING BACK WHENEVER THAT MEETING IS OVER FOR THE FINAL ROUND ROBIN. AND SUSAN WILL LEAD THE MEETING IN MY STED. I WANTED TO ANNOUNCE THAT IN ADVANCE IN CASE I HAVE TO RUN OUT DURING THE TALK THAT PRECEDES THE 4:00 HOUR. WE WERE TO HAVE AN UPDATE FROM THE DEPUTY ASSISTANT SECRETARY OF HEALTH, THOMAS NOVOTNY. HE MUST BE RUNNING LATE SO WE WILL MOVE RIGHT ALONG AND WE WILL GO AHEAD AND GET STARTED IF WE ARE READY WITH THE FIRST PRESENTATION AND THEN SLIDE IN DR. NOVA SOUTHEASTERN LATER. IT'S MY PLEASURE TO INTRODUCE -- DR. NOF NOF. IT'S MY PLEASURE TO INTRODUCE LORI MCILWAIN SPEAKING TO THE COMMITTEE ABOUT HER ORGANIZATION'S WORK ON THE ISSUE OF WANDERING. FOLLOWED BY DR. PAUL LIPKIN, DIRECTOR OF INTERACTIVE AUTISM NETWORK WHO WILL ALSO BE SPEAKING ABOUT RECENT RESEARCH ADDRESSING THE ISSUE OF WANDERING. THIS IS AN IMPORTANT ISSUE WITH CONSIDERABLE MORBIDITY AND MORTALITY SO IT'S IMPORTANT THAT WE CONSIDER THIS AS A COMMITTEE. SO, IF YOU'LL TAKE THE PODIUM AND GO RIGHT INTO IT. >> LORI MCILWAIN: -- >> JOSHUA GORDON: I SHOULD SAY AT THE OUTSET WE SHOULD HAVE PLENTY OF TIME FOR QUESTIONS AND DISCUSSION AFTERWARDS SO EACH SPEAKER WILL TAKE ABOUT A HALF HOUR AND THEN THAT WILL LEAVE US WITH A HALF HOUR OF DISCUSSION. >> LORI MCILWAIN: THANK YOU. >> JOSHUA GORDON: THANK YOU. >> LORI MCILWAIN: GOOD PRONUNCIATION OF MY NAME TOO, THANK YOU. AND THANKS TO THE COMMITTEE FOR INVITING ME HERE TODAY. I BELIEVE THERE IS NIA'S FOURTH UPDATE ON MISSING CHILDREN AND ADULTS ON THE AUTISM SPECTRUM AS IT RELATES TO WANDERING ELOPEDMENT. FOR THOSE NOT FAMILIAR WITH US, THE NATIONAL AUTISM ASSOCIATION IS A PARENT-RUN ORGANIZATION AND THE ISSUES WE FOCUS ON ARE OFTEN THE SAME CHALLENGES OUR OWN CHILDREN HAVE PHASED OR ARE FACING. IN ACCORDANCE WITH OUR MISSION, WE WORK TO ADDRESS THE MOST URGENT NEEDS OF OUR COMMUNITY, WHICH OFTEN CENTER ON TOUGHER TOPICS THAT IMPACT THE LIFESPAN OF OUR LOVED ONES SORT OF LOOKING AT THE LETHAL AND HIGHER RISK OUTCOMES FIRST AND THEN WORKING BACKWARDS TO DETERMINE CONTRIBUTING FACTORS LEADING UP TO THOSE OUTCOMES FOR THE SAKE OF PREVENTION. AND THESE FACTORS CAN RANGE FROM MISTREATMENT TO CO-MORBIDITIES, COMMUNICATION CHALLENGES, AND ANXIETY AND STRESS RESPONSE, SENSORY CHALLENGES IS ON THE GI ISSUES, PAIN, EPILEPSY, ET CETERA. WE HAVE VARIOUS PROGRAMS DEDICATED TO EDUCATION AND TRAINING AND DIRECT ASSISTANCE AND SINCE 2011, I HAVE SHIPPED CLOSE TO 40,000 BIG RED SAFETY BOXES TO AUTISM FAMILIES ACROSS THE U.S. IN AN EFFORT TO PREVENT WANDERING. WE ALSO WORK WITH THE NATIONAL CENTER FOR MISSING AND EXPLOITED CHILDREN AND NOTIFY THEM OF MINOR CHILDREN WITH AUTISM MISSING AND WE HAVE HELPED THEM AND TAKE ALMOST 400 CASES. NIA BEGAN COLLECTING DATA ON WANDESHING RELATED LETHAL OUTCOMES IN 2009 AND THEN ALL AS IS D MISSING PERSON CASES IN 2011. WHAT I'LL SHARE WITH YOU TODAY IS THE RESULTS FROM OUR DATA COLLECTION FROM 2011 TO 2016 AS WELL AS AN UPDATE ON THE 2017 CASES. WE COLLECTED OVER 800ASD MISSING PERSON CASES AND FOUND MISSING CASES THAT OCCURRED IN THE U.S. OVER A SIX-YEAR TIMEFRAME. FOUND MISSING CASES ARE THOSE INVOLVING CHILDREN AND ADULTS WHO WEREN'T REPORTED MISSING BUT WERE FOUND LOST OR WANDERING AS WHAT HAPPENED WITH MY SON ALMOST A DECADE AGO WHEN HE LEFT THE SCHOOLYARD AND WAS FOUND BY A MOTORIST. CASES WERE COLLECTED THROUGH RELIABLE MEDIA AND AGENCY CHANNELS IN REALTIME AND EXISTING CASE INFORMATION WAS UTILIZED TO COLLECT OUTCOME RETROSPECTIVELY. THIS IS CERTAINLY AN UNDERREPRESENTATION OF WHAT IS REALLY HAPPENING OUT THERE. BUT THESE ARE THE CASE THAT IS WERE SERIOUS ENOUGH TO BE REPORTED TO THE MEDIA. MISSING PERSON CASES WERE IDENTIFIED AND REVIEWED TO IDENTIFY DIAGNOSIS, U.S. LOCATION, AGE, GENDER AND RACE, TIME OF YEAR, TIME OF DAY, SEARCH RESPONSE AND INTERACTION AND OUTCOME AND OTHER RELEVANT INFORMATION. 808 CASES INCLUDED IN THIS SAMPLE. 139 RESULTED IN DEATH. 105 REQUIRED MEDICAL ATTENTION, 309 WERE CLOSE CALLS WHICH INCLUDES THOSE RESCUED FROM WATER, TRAFFIC, ROOFTOPS, OTHER HIGH-RISK LOCATIONS AND SITUATIONS. THE DATABASE WAS USED TO DETERMINE THAT FIVE INDIVIDUALS WITH ASD ARE STILL MISSING, ONE OF WHOM HAS SINCE BEEN FOUND DECEASED. 250 CASES DEMONSTRATED MINIMAL RISK OR THE INFORMATION WAS UNCLEAR. OF 139 DEATHS, 71% MOSTLY CHILDREN, DIE FROM ACCIDENTAL DROWNING. HIS REPLACES OUR OLDER STATISTIC WE BASED ON A 3-YEAR SAMPLE OF 91%. 18% DIED AS THE RESULT OF BEING STRUCK BY VEHICLES, SIX INDIVIDUALS DIED AFTER BEING STRUCK BY A TRAIN. TWO INDIVIDUALS, CHILDREN, DIED FROM HEATSTROKE AND TWO ADULTS DIED FROM HYPOTHERMIA. TWO INDIVIDUALS DIED AFTER FALLING FROM A DANGEROUS HEIGHT. THAT WAS ONE TEEN AND ONE CHILD. TWO ADULTS DIED AFTER MISTAKEN HOME INVASIONS, ONE FROM A GUNSHOT WOUND AND ONE FROM AS FIXATION AND ONE ADULT WITH AUTISM DIED AS THE RESULT OF LEASH RESTRAINT AND ONE ADULT DEATH WAS RULED A SUICIDE. LOOKING AT HIGHER RISK CATEGORIES THAT RESULTED IN DEATH OR INJURY, THE HIGHEST THREAT WAS WATER FOLLOWED BY TRAFFIC. THE CLOSE CALLS IN BLUE CORRELATE WITH IAN'S SURVEY RESULTS AND THE PEDIATRICS DATA WHERE PARENTS REPORT AID HIGHER AMOUNT OF CLOSE CALLS WITH TRAFFIC OVER WATER. BUT ON THE LETHAL SIDE, WATER IS CERTAINLY THE HIGHER THREAT. OTHER RISK CATEGORIES IS 8 CASES OF POST-ELOPEDMENT ABDUCTION OR PREDATOR INVOLVEMENT. 6 MISSING PERSON CASES NOTED SUICIDEIDATIONS OR COMPLETED SUICIDE WHICH IS SNAG WE WERE NOT SEEING EARLY ON. THE USE OF TASERS OR PHYSICALSTRAINT OR PLEASE INVOLVEMENT IN SEVERAL CASES INCLUDING A TASER OLEFINE-YEAR-OLD GIRL, PHYSICAL RESTRAINT ON AN ADULT WITH AUTISM THAT RESULTED IN DEATH AND THE USE OF GUNFIRE REPORTEDLY INTENDED FOR AN ADULT MALE WITH AUTISM WHO LEFT HIS GROUP HOME WHICH INSTEAD, STRUCK HIS AIDE. >> JOSHUA GORDON: SORRY, LORI, THE NUMBERS ON THE BOTTOM, ARE THEY NUMBERS OF CASES? >> LORI MCILWAIN: YES, BUT THOSE ARE JUST THE IDENTIFIED -- THIS IS ACTUALLY A PAIRED DOWN VERSION OF THE HIGHER-RISK CATEGORY. >> JOSHUA GORDON: NUMBER OF CASES. WOW. OKAY. >> LOR LOR CHILDREN 5-9 HAD THE HIGHEST NUMBER OF DEATHS WHILE CHILDREN UNDER 5 FACED THE HIGHEST LETHAL RISK WITH CASES ENDING IN DEATH. NEARLY 60% OF THE TIME. THE LETHAL RISK DROPPED BEYOND AGE 14 SLIGHTLY INCREASED IN ADULTS 25-29. ALSO I DON'T HAVE A SLIDE FOR THIS BUT THE LETHAL RISK AMONG FEMALES WITH ASD WAS HIGHER, WHICH IS SIMILAR TO OUR PREVIOUS REPORTS AND OTHER REPORTS OUT THERE. THE AVERAGE AGE PER YEAR STAYED RELATIVELY CONSISTENT AMONG NON LETHAL CASES BUT WE DID SEE INCREASE IN AVERAGE AGE FOR LETHAL OUTCOMES IN MOST YEARS OF THIS SAMPLE PERIOD. I BELIEVE A PREVIOUS UPDATE TO THE COMMITTEE HAD MENTIONED THAT WE WERE SEEING INCREASE IN AGE. DROWNING DEATHS TEND TO OCCUR IN YOUNGER CHILDREN ESPECIALLY FEMALES. THE TRAFFIC INJURY DEATHS WERE MORE LIKELY TO OCCUR IN OLDER CHILDREN TEENS AND ADULTS, MAINLY MALES. THIS IS THE FIRST TIME WE LOOKED AT ETHNICITY FOR LETHAL OUTCOMES AND WE ARE SEEING A DISPROPORTIONATE RISK AMONG BLACK INDIVIDUALS WITH ASD WHEN COMPARED TO GENERAL POPULATION NUMBERS. WHEN LOOKING AT CASES BY YEAR, 2012 WAS AN UNUSUAL YEAR. WE INITIALLY ATTRIBUTED THAT TO THE WARMER TEMPERATURES THAT YEAR. THINGS LEVELED OUT AFTER THAT BUT THE LAST TWO YEARS THE CASES WENT BACK UP. AND ABOUT HALF OF THE LETHAL OUTCOMES IN THIS SAMPLE HAPPENED IN THE LAST TWO YEARS ALONE AND 2017 SO FAR HAS BEEN SIMILAR TO THE PAST TWO YEARS. RISK OF DEATH WAS HIGHEST DURING SUMMER AND SPRING MONTHS. OVER ALL ACTIVITY WAS HIGHER IN SEPTEMBER BUT THE LETHAL RISK WAS LOWER AND THAT IS LIKELY DUE TO SCHOOL TRANSITIONING. WE LOOKED AT TIME OF DAY AND OTHER FACTORS THAT MAY HAVE CONTRIBUTED TO ELOPEDMENT AND THOSE IDENTIFIED NEARLY 40% OCCURRED DURING A TRANSITION. SCHOOL BUS AND CLASSROOM TRANSITIONS CAME UP A LOT IN THAT DATA. OTHER TIMES WERE DURING COMMOTION OR STRESS WHICH INCLUDES CASES WHERE THE INDIVIDUAL WAS FRUSTRATED OR AGITATED. WE SAW A MULTIPLE CASES WHERE AN UPSET INDIVIDUAL WALKED, JUMPED, RAN, OR RAN STRAIGHT INTO TRAFFIC B A THIRD OF CASES OCCURRED BETWEEN 9 P.M. AND 9 A.M. WHEN CAREGIVERS WERE MORE LIKELY TO BE SLEEPING. THERE WERE A COUPLE OF ARRESTS OF PARENTS WHOSE CHILDREN WENT MISSING OVERNIGHT. 13% OCCURRED WHILE OUTSIDE PLAYING OUTSIDE INCLUDES SCHOOL RECESS. THE LETHAL RISK FOR THOSE WHO ELOPED FROM AN UNFAMILIAR SETTING OR FROM A FAMILY GATHERING WAS HIGH. REPORTED CASES FROM A FAMILY GATHERING ENDED IN DEATH NEARLY 70% OF THE TIME. FOR IDENTIFIED SEARCH TIMES, MOST LETHAL OUTCOMES OCCURRED WITHIN AN HOUR INDICATING THAT QUICKER SEARCH TIME IS PRETTY ESSENTIAL. THESE ARE UPON TO THE PLACES FROM WHERE INDIVIDUALS LEFT AND WHERE THEY WERE FOUND RELATIVES HOMES, HOTELS AND VACATION HOMES, POSED THE HIGHEST LETHAL RISK. AGAIN UNFAMILIAR SETTINGS. WATER AD TRAIN TRACKS ALSO POSED THE HIGHEST LETHAL RISK. MOST INDIVIDUALS SEEMED TO BE SEEKING OUT QUIET, LOW SENSORY LOCATIONS MORE SO THAN SPECIAL TOPICS. SO WHAT INCREASED RISK? SETTING TYPES SEEMED TO HAVE MORE OF AN IMPACT ON RISK THAN SUPERVISOR TYPE. RESIDENTIAL SETTINGS NEAR WATER INCREASED RISK AS DID RECREATIONAL SETTINGS, OUTDOOR RECREATIONAL SETTINGS. TIMES OF TRANSITION INCREASED RISK. INDIVIDUALS WHO BECAME QUICKLY AGITATED OR UPSET SEEMED TO BE AT HIGHER RISK. CAREGIVER DISTRACTION WAS A FACTOR WHEN MOM OR DAD USED THE RESTROOM. ONE CASE THERE WAS A FATHER WHO WAS WINTERIDESSING HIS HOME WHILE CHILD PLAYED OUTSIDE. STAFF ATTENDING TO OTHER CHILDREN OR USING THE RESTROOM, THAT SORT OF THING. HOLIDAY AND FAMILY GATHERINGS AND LONGER SEARCH TIMES ALSO INCREASED RISK AS WELL AS POLICE NOT KNOWING WHERE TO LOOK OR HOW TO INTERACT. WHAT DECREASED RISK? THE LETHAL RISK WAS LOWER IN MORE POPULATED AREAS LIKE SCHOOLS AND HOSPITALS. THAT'S NOT TO SAY IS THAT THIS ISN'T HAPPENING FROM SCHOOLS. WE JUST RECENTLY HAD A DEATH IN ARKANSAS WITH A BOY 6 YEARS OLD LEFT IN ELEMENTARY SCHOOL. THE SCHOOL WAS NOT FENCED BECAUSE BY STATE LAW THEY DO NOT REQUIRE FENCING UNLESS THERE IS SAY PRESCHOOL PROGRAM. AND THAT CHILD WITH AUTISM WAS FOUND IN A NEARBY POOL. SO, POPULATED AREAS NOT IN CLOSE PROXIMITY TO WATER SEEING DECREASED RISK. QUICKER RESPONSE TIME WAS ALSO KEY AS WELL AS TOOLS LIKE SILVER ALERTS, TRACKING AND REVERSE 911, WHICH PROMPTED MORE PUBLIC INVOLVEMENT WHICH WE SAW A LOT OF. WE ARE HOPING ALL STATES WITH SILVER ALERTS EXPAND THEIR CRITERIA IF THEY HAVE NOT DONE SO ALREADY TO INCLUDE INDIVIDUALS WITH AUTISM AND OTHER DISABILITIES REGARDLESS OF THEIR AGE. IDs ALSO HELPED DECREASE RISK ESPECIALLY ONCE THE INDIVIDUAL WAS FOUND. POLICE FAMILIARITY AND TRAINING WERE ALSO KEY FACTORS IN POSITIVE OUTCOMES. WE ARE SEEING ABOUT 20AS IS D MISSING PERSON CASES PER MONTH SERIOUS ENOUGH TO BE REPORTED TO THE MEDIA ABOUT 3-4 DEATHS PER MONTH. HERE ARE SOME OF THE HEADLINES FROM THIS MONTH. THIS IS OUT OF NAPLES, FLORIDA, JULY 3. JULY 5 OUT OF PAWTUCKET RHODE ISLAND, JULY 6 OUT OF CALIFORNIA. THIS INDIVIDUAL LEFT HIS GROUP HOME. HE LEFT THROUGH A WINDOW. HE WAS SEVERELY IMPACTED. HE WAS TOLD BY POLICE TO STAY PUT. HE COULD NOT COMPLY WITH THOSE INSTRUCTIONS. AND HE WAS KILLED BY MULTIPLE VEHICLES. THIS SAME INDIVIDUAL IN JANUARY WENT TO THE SAME HIGHWAY AND WAS FOUND SAFE. JULY 7 OUT OF INDIANA. THIS IS A LITTLE BOY VISITING FROM LOUISVILLE. AND THIS IS ONE OF THE CASES WHERE WHEN WE REPORT THIS TO NATIONAL CENTER FOR MISSING EXPLOITED CHILDREN, WE FLAG CASES LIKE HIS BECAUSE WE SEE HE IS IN AN UNFAMILIAR SETTING AND WE KNOW THAT THESE CHILDREN ARE AT HIGH-RISK, ESPECIALLY, AND ON JULY 8 UNFORTUNATELY, HIS BODY WAS FOUND IN A NEARBY POND. THIS IS JULY 9 OUT OF FLORIDA. JULY 10 ANOTHER CASE OUT OF PAWTUCKET RHODE ISLAND FOUND SAFE. THIS IS JULY 11 OUT OF ALBANY, GEORGIA. THIS WAS A MULTI-AGENCY SEARCH OVERNIGHT. ANOTHER JULY 11 CASE IN ALBANY OREGON. AND THIS BOY'S BODY WAS FOUND IN A POND ON JULY 12. THERE IS GOOD NEWS. THERE IS MORE AWARENESS. MORE RESCUES WERE SEEN. MORE UNDERSTANDING TO SEARCH WATER FIRST. BUT WE ARE ALSO SEEING INCREASE IN CASES AND DEATHS. SO AWARENESS, POLICE TRAINING AND RESOURCES ARE NOT WIDESPREAD. I RECENTLY DID TRAINING IN ARKANSAS. I SPOKE TO ABOUT 150 POLICE OFFICERS. I WAS ASKING THEM ABOUT CERTAIN TOOLS AND TECHNOLOGY TO SEE IF THEY HEARD OF IT. ONE PERSON RAISED THEIR HAND. SO WE ARE NOT REACHING A LOT OF OUR STATE, SOUTHERN STATES, SOUTHWESTERN STATES, PACIFIC NORTHWEST STATES WITH THIS INFORMATION. ALSO A DISPROPORTIONATE RISK AMONG AFRICAN-AMERICAN INDIVIDUALS WITH AUTISM. HERE IS AN EXAMPLE OF AN AGENCY THAT LIKELY HAS NOT HAD TRAINING. A YOUNG BOY WITH AUTISM WAS REPORTED MISSING. THAT'S THIS YEAR. THEY SEARCHED THE HOME MULTIPLE TIMES BECAUSE AS THIS LAWSUIT SAID IS IN SOME CASES, MISSING CHILDREN ARE OFTEN FOUND HIDING IN THEIR OWN HOMES AND THAT MIGHT BE THE CASE WITH NEUROTYPICAL KIDS BUT CHILDREN WITH AUTISM ARE MORE LIKELY TO GO TO WATER AND THAT'S EXACTLY WHERE THIS CHILD WAS FOUND. ALZHEIMER'S COMMUNITY FACES SIMILAR CHALLENGES. MANY MISSING PERSON CASES, MORE THAN OUR COMMUNITY, NOT AS MANY DEATHS AS FAR AS MY DATA GOES, WHICH COULD BE THE RESULT OF NATIONAL MODELS LIKE THIS ONE FROM THE INTERNATIONAL ASSOCIATION OF CHIEF OF POLICE, WHICH HAS 30,000 MEMBERS. THEY PROVIDE TRAINING, TRAIN THE TRAINER SESSIONS, LOTS OF GOOD STUFF INCLUDING MAIL PIECES LIKES THIS ONE TO HELP FIRST RESPONDERS RECOGNIZE THE SIGNS OF ALWAYS HEIMERS AND THE DOS AND DON'TS OF INTERACTION. PROGRAM WAS INITIALLY FEDERALLY FUNDED IN PART THROUGH THE MISSING ALZHEIMER'S DISEASE PATIENT ASSISTANCE PROGRAM ALONG WITH A RADIO FREQUENCY TRACKING INITIATIVE. RADIO FREQUENCY TRACKING IS VERY DIFFERENT FROM GPS IT'S LOW-TECH T DOES NOT STORE DATA. IT DOES NOT LISTEN IN. IT DOES NOT -- IT WORKS UNDER WATER. AND IT DOES NOT REQUIRE A SMARTPHONE, WHICH MANY FAMILIES CANNOT AFFORD. IT ALSO RUNS THROUGH LOCAL LAW ENFORCEMENT. THEY MUST HAVE TRAINING, WHICH IS HOW THEY LEARN ABOUT AUTISM. SO, GREAT PROGRAM, BEEN AROUND FOR A LONG TIME. HERE IS ONE CASE THIS YEAR INVOLVING A PERSON WITH AUTISM. IT WAS FOUND VIA THIS SAME RADIO FREQUENCY TRACKING TECHNOLOGY. ANOTHER CASE OUT OF CALIFORNIA BECAUSE RADIO FREQUENCY TRACKING REQUIRES A MONTHLY BATTERY CHANGE, THIS TENDS TO HELP BUILD FA MERITY AND TRUST BETWEEN THE INDIVIDUAL AND MEMBERS OF THE AGENCY. SO, THAT'S WHAT HELPED IN THIS CASE. THE WATER WASN'T DEEP BUT IT WAS FEBRUARY. IT WAS FRIGID SO THEY WERE WORRIED ABOUT HYPOTHERMIA. INSTEAD OF HAVING TO GO IN AND FORCEFULLY GET HIM OUT, THEY WERE ABLE TO TALK HIM INTO COMING OUT BECAUSE THAT VOLUNTEER KNEW THE TEAM. IT WAS INTRODUCED AND EXPANDED TO INCLUDE PEOPLE WITH DEVELOPMENTAL DISABILITIES WHO MAY WANDER FROM SAFE SETTINGS. WE BELIEVE THIS IS A CRITICAL PIECE OF THIS, CERTAINLY NOT THE WHOLE PIECE BUT WOULD BE EXTREMELY BENEFICIAL FOR OUR COMMUNITY AND PREVENTING ELOPEDMENT, REDUCING RISK OF INJURY AND DEATH AS WELL AS RISKS THAT MAY ARISE DURING INTERACTION. SO THE TRAINING PIECE ALONE IS CRITICAL. A LOT OF FOCUS HAS GONE ON THE TRACKING COMPONENT OF THIS BILL. BUT WE ARE KEEPING OUR EYE ON SOMETHING LIKE THE ISP MODEL TAILORED FOR OUR COMMUNITY WOULD BE IDEAL TO PROVIDE A GOOD FOUNDATION FOR BUILDING RELATIONSHIPS BETWEEN LAW ENFORCEMENT AND INDIVIDUALS WITH AUTISM. AND ANOTHER KEY CONCERN IS REALLY FOR THE SEARCH VOLUNTEERS AND THE GOOD SAMARITAN WHOSE INTERVENE AND FIRST RESPONDERS. WHAT IS NOT INCLUDED IN THIS DATA ARE THOSE WHO DIED OR WERE INJURED DURING A SEARCH-AND-RESCUE. ONE INDIVIDUAL JUST A GOOD SAMARITAN, ACCIDENTLY DROWNED TRYING TO SAVE A CHILD WITH AUTISM. ANOTHER DIED AFTER DISCOVERING A DECEASED CHILD WITH AUTISM IN HISS POOL. THE EFFECT OF THESE CASES GO WELL BEYOND OUR COMMUNITY AND THIS IS SOMETHING WE NEED TO RECOGNIZE AS WELL. SO WE HOPE THAT THE REINTRODUCTION OF KEVIN'S LAW WILL HAPPEN SOON. I THINK IT'S SUPPOSED TO HAPPEN ANY DAY NOW. I KNOW THE LANGUAGE IS BEING WORKED ON. WE THANK SENATORS GRASSLEY AND CLOVE SHAR FOR THEIR SUPPORT. OF COURSE SENATOR CHUCK SCHUMER WHO ORIGINALLY INTRODUCED THE BILL EARLY ON AND CONGRESSMAN CHRIS SMITH'S WHO FOUGHT FOR THIS BILL AND CONGRESSWOMAN MAXINE WATERS AS WELL FOR THEIR CONTINUED SUPPORT ON THIS. SO HERE'S IS WHAT WOULD HELP AND WE KEEP COMING BACK TO THIS, THE NEED FOR MORE INVOLVEMENT FROM OUR PEDIATRIC COMMUNITY. THEY ARE IN A POSITION TO WARN CAREGIVERS. WE ARE DOING THE BEST THAT WE CAN TO TRY TO REACH CAREGIVERS, AND WE COULD USE SOME HELP ON THE GROUNDS. THESE CHILDREN ARE DIAGNOSED OBVIOUSLY SOMEBODY IS SEEING THEM. AND CAN MAKE RECOMMENDATIONS. SO WE KNOW HOLIDAYS AND FAMILY GATHERTIONS POSE SIGNIFICANT RISK. WE KNOW THESE CHILDREN WILL GO STRAIGHTED TO WATER. THERE IS NO REASON WHY EVERY CAREGIVER SHOULDN'T BE WARNED OF THIS SPECIFIC RISK LIKE THIS ABOUT PREVENTION STRATEGIES AND TO BE ENCOURAGED TO ENROLL THEIR CHILDREN INTO SWIMMING LESSONS. WIDESPREAD TRAINING ALSO ESSENTIAL FEDERAL INITIATIVES WOULD HELP FAMILIES AND FIRST RESPONDERS AND OUR OTHER STATES. LOTS OF TRAINING AND TOOLS ESPECIALLY IN THE EASTERN STATES NOT SO MUCH IN OTHER STATES. AND HAVING ACCESS TO LIFE-SAVING INFORMATION AND RESOURCES SHOULDN'T DEPEND ON WHERE AN INDIVIDUAL WITH AUTISM LIVES. ALSO WONDERING IF OUR DEPARTMENT OF JUSTICE CAN BECOME MORE INVOLVED WITH THIS COMMITTEE. THE DISPROPORTIONATE RISK AMONG AFRICAN-AMERICAN CHILDREN WITH AS IS D NEEDS ARE IMMEDIATE INVOLVEMENT. OUTREACH, AWARENESS AND RESOURCES ARE NEEDED. I WOULD BE INTERESTED IN HEARING YOUR THOUGHTS ON THAT AND THINGS WE CAN DO TO HELP ADDRESS THAT. AS I MENTIONED EARLIER, WE ARE SEEING CROSSOVER BETWEEN ELOPEDMENT AND SUICIDE ANDIDATION AND SOMETIMES IN VERY YOUNG CHILDREN WITH AUTISM. AND THIS ISN'T SOMETHING THAT WE WERE SEEING EARLY ON. AS I MENTIONED, OUR ONE ADULT DIED BY SUICIDE. THAT HAPPENED LATE LAST YEAR. IT'S THE FIRST TIME WE HAD SEEN A CASE LIKE -- MISSING PERSON CASE LIKE THAT SINCE WE BEGAN COLLECTING DATA ON THESE CASES. I CAN TELL YOU IN 2017 THERE ALREADY HAS BEEN TWO. SO NIA SPOKE ABOUT SUICIDE RECENTLY IN THE U.K. DR. LIPKIN WAS THERE AS WELL. ELOPEDMENT BEHAVIORS AND HEIGHTENED STRESS RESPONSE MAY EVOLVE INTO OTHER FORMS OF EXIT SEEKING AND SOME INDIVIDUALS. SO STUDY AND DISCUSSION IS NEEDED ON THE TOPIC OF SELF HARM AND SUICIDALITY AND ASD HERE IN THE U.S. AND IT WAS GREAT TO SEE DR. LIPKIN AND DR. CASSIDY FROM COVENTRY AND DR. ROGERS FROM NEW CASTLE AT IAC DO. REPORT ON THIS CRITICAL TOPIC. LAST NOVEMBER CHRISTIAN, A YOUNG MAN WITH ASPERGER'S REPORTED MISSING FROM HIS GRANDMOTHER'S HOME. HIS DEATH WAS RULED A SUICIDE. THIS PERSON'S FAMILY HAS BEEN DEVASTATED. AND I CAN TELL YOU HE WAS VERY BRILLIANT. HIS SISTER WILL GO ON TO BE A WONDERFUL ADVOCATE FOR OUR COMMUNITY. I WOULD LIKE TO END THIS PRESENTATION WITH WORDS FROM CHRISTIAN'S MOTHER. WHEN YOU THINK OF CHRISTIAN, YOU FIND YOURSELF GUILTY OF BEING SELFISH. [ READING ] CHRISTIAN CLUNG TO THE SAFETY AND FAMILIARITY FROM HIS FAMILY. [ READING ] SO THANK YOU TO CHRISTIAN'S FAMILY FOR THOSE WORDS AND THANK YOU ONCE AGAIN TO THE COMMITTEE FOR YOUR TIME AND YOUR CONSIDERATION. IF YOU ARE A PARENT LOOKING FOR WANDERING PREVENTION MATERIALS WE HAVE THOSE AT AWARE.ORG. AND NATIONAL AUTISM ASSOCIATION.ORG. WE ALSO ENCOURAGE CAREGIVERS TO DOWNLOAD OUR FIRST RESPONDER TOOLKITS OR OUR MEET THE POLICE TOOLKITS. WE ARE ENCOURAGING THEM TO INTRODUCE THEMSELVES TO THEIR LOCAL MEMBERS OF LAW ENFORCEMENT THANK YOU VERY MUCH. [ APPLAUSE ] >> JOSHUA GORDON: THANK YOU FOR THAT COMPELLING AND ELOQUENT PRESENTATION. AGAIN, WE'LL HAVE QUESTIONS AND OPPORTUNITIES FOR DISCUSSIONS AFTER THE NEXT PRESENTATION BY DR. LIPKIN OF THE INTERACTIVE AUTISM NETWORK. >> DR. LIPKIN: THANK YOU ALL FOR ASKING ME TO SPEAK TODAY AND PARTICULARLY, DR. GORDON, SUSAN DANIELS I WOULD LIKE TO THANK LORI FOR HER IMPORTANT PRESENTATION. WE AT THE INTERACTIVE AUTISM NETWORK HAVE DONE MORE RECENT WORK ON THIS AND IT'S THAT DATA THAT I'D LIKE TO PRESENT TO YOU TODAY. THIS IS AS FAR AS I'M CONCERNED, A MAJOR ISSUE THAT WHERE WE HAVE SEEN ACTION BUT WE HAVE SEEN A LITTLE CHANGE AND THE QUESTIONS HAS COME UP WHAT WE NEED TO DO TO TRY TO DECREASE THE ISSUES OF MORBIDITY AND MORTALITY FOR CHILDREN AND ADULTS WITH AUTISM. SO FOR THOSE OF YOU WHO DID NOT PARTICIPATE IN THE IACC PROCESS IN PREVIOUS YEARS, THIS WHOLE STORY BEGAN IN 2010 THANKS TO THE WORK OF LORI, THE NATIONAL AUTISM ASSOCIATION, PEOPLE IN AUTISM SPEAKS AND OTHER IMPORTANT ADVOCACY ORGANIZATIONS WHEN PARENTS WERE SPEAKING UP AND DESCRIBING PROBLEM THAT THEY WERE SEEING AND THE MAJOR PROBLEMS WITH MORBIDITY AND MORTALITY OF CHILDREN AND YOUNG ADULTS AT THAT TIME. AND I THINK THERE WAS IN SOME WAYS, REALLY QUITE IMPRESSIVE ACTION TAKEN IN A VERY SPORT PERIOD OF TIME. SO FROM OCTOBER 2010, THE ISSUE WAS BROUGHT UP AT ONE OF THESE MEETINGS. WITHIN A MONTH A SAFETY SUBCOMMITTEE WAS CONVENED BY THE INTERAGENCIES COORDINATING COUNCIL. FUNDING WAS OBTAINED FROM AUTISM SPEAKS, NATIONAL AUTISM ASSOCIATION, AND I APOLOGIZE FOR NOT KNOWING OFFHAND THE OTHER, BUT SEVERAL OTHER AUTISM ASSOCIATIONS TRIED TO DO THE FIRST DEEP DIVE INTO LOOKING AT WHAT THE PREVALENCE OF THIS PROBLEM THAT WE ARE SEEING IS. WE AT THE INTERACTIVE AUTISM NETWORK LAUNCHED A SURVEY SOON THEREAFTER IN MARCH AND A REPORT WAS IN HAND TO THE COUNCIL BY APRIL. SO, IT TOOK ESSENTIALLY SIX MONTHS FROM A CALL FOR CONCERN TO WHERE WE HAD VERY IMPORTANT INFORMATION, WHICH WAS THEN PUBLISHED IN THE LITERATURE ONE YEAR LATER. I WILL JUST VERY BRIEFLY REVIEW WHAT THAT ADDITIONAL STUDY WAS ALL ABOUT. AT THAT TIME, WE SURVEYED PARENTS WHO WERE REGISTERED WITHIN THE INTERACTIVE AUTISM NETWORK. ABOUT 1000 SURVEYS WERE COMPLETED AND FROM FAMILIES ALL THROUGHOUT THE UNITED STATES REPORTING ON WANDERING AND NATURE THEIR CHILDREN. THIS WAS THE FIRST SET OF DATA THAT CLEARLY SHOWED THE VERY HIGH RATES OF WANDERING IN CHILDREN AND TEENS WITH AUTISM WITH OVERALL WANDERING RATE OF 49%. SO ESSENTIALLY HALF OF ALL CHILDREN WITH AUTISM HAVE WANDERED AT SOME POINT IN THEIR LIVES AND IT PEEKS IN EARLY CHILDHOOD BUT DIDN'T DISAPPEAR. AND IT ROSE AS CHILDREN BECAME OLDER INTO ADOLESCENTS. THE BLUE LINE ABOVE ARE THE CHILDREN WITH AUTISM. THE RED LINE OR ORANGE LINE BELOW IS THEIR SIBLINGS. SO WHILE WANDERING IS SAY PROBLEM AMONG ALL CHILDREN, PARTICULARLY PRESCHOOLERS, WE CAN SEE THAT IN CHILDREN AND TEENS WITH AUTISM THE RATES ARE MUCH HIGHER AND REALLY QUITE HIGH. AND AT THAT TIME THE DATA SHOWED THAT OF ALL THOSE WHO ATTEMPTED, 53% SUCCEEDED AND WERE MISSING LONG ENOUGH TO CAUSE CONCERN ABOUT THEIR SAFETY. AND POLICE WERE CALLED 31% OF THE TIME. TWO-THIRDS REPORTED CLOSE CALL WITH A TRAFFIC INJURY AND 24% REPORTED CLOSE CALL WITH DROWNING. A LAWYER REPORTED TO US TODAY ON THOSE WHO UNFORTUNATELY THE FAY TATTLE WE ARE SEEING. AT THAT TIME -- FATALITIES. THOSE WITH ASPERGER'S DISORDERS WERE TENDING TO ESCAPE BECAUSE OF ANXIETY AND THOSE WITH LOWER FUNCTIONING PROBLEMS WERE MORE LIKELY TO SIMPLY RUN FOR PURPOSES OF EXPLORATION OR HEADING TO A FAVORITE PLACE. AND SO, WHILE IT WAS APPARENT THAT THE TIME THIS IS VERY COMMON CONDITION, IT WAS A MAJOR CONCERN TO FAMILIES THAT MORE SUPPORTS WERE NEEDED. THE ICD9 CODING WAS THEN EXTENDED FROM ALZHEIMER'S INTO AUTISM. SO THERE WAS SOME ACTION THERE ON THE PART OF THE CODING SYSTEM. BUT CLEARLY OTHER AREAS OF RESEARCH WERE BEING CALLED FOR. THERE IS REALLY BEEN ONLY THREE PAPERS SINCE THAT 2012 PUBLICATION THAT HAVE LOOKED AT THIS. AGAIN, THESE ARE USING DIFFERENT SOURCES OF DATA. TWO OF THEM ARE FROM THE PATHWAY SURVEY FROM THE CENTERS FOR DISEASE CONTROL, NATIONAL CENTER FOR HEALTH STATISTICS. AND THEY ESSENTIALLY VERIFY THE SAME TYPES OF FINDINGS. SO, OUR DATA IS ALSO A BIT SKEWED BY PEOPLE WHO VOLUNTEER TO PARTICIPATE AND IS SKEWED TOWARDS HIGHER SOCIOECONOMIC GROUPS. BUT THE CDC DATA REALLY SHOWED THAT A THIRD OF KIDS WERE WANDERING IN THE COURSE OF THE PRIOR YEAR FROM HOME, FROM SOMEONE ELSE'S HOME, FROM DAY CARE, FROM PUBLIC PLACES. SO THEY VERIFY THIS REMAINS A HUGE ISSUE ACROSS SURVEY MODALITIES. AND THAT PAPER WAS BY CATHY RICE AND THIS PAPER BY KIELA TOOK A LOOK WHAT THE KIND OF MEASURES WERE REPORTED THROUGH THAT SURVEY AND PARENTS CLEARLY VEERED TOWARDS USING PHYSICAL BARRIERS, ELECTRONIC MEASURES AND SMALL FREQUENCIES, ABOUT 3%. BUT ANY TYPE OF PREVENTION STRATEGY WAS BEING USED BY THAT. A THIRD OF PARENTS REPORTED CHILD HAVE AS IS D ONLY BUT FOR THOSE WHO HAVE AUTISM SPECTRUM DISORDER AND INTELLECTUAL DISABILITIES, MORE THAN HALF OF THEM WERE NEEDING TO USE PREVENTION STRATEGIES FOR CHILDREN THEY KNEW WERE WANDERING. SO ALANANDER SIGN CHILD PSYCHIATRIST WHO WORKED WITH US OVER THE COURSE OF A YEAR FROM JOHNS HOPKINS AND WAS REALLY INTERESTED IN EXTENDING THIS DATA FURTHER TO SEE WHAT MORE WE COULD LEARN ABOUT WANDERING. AND SO, THROUGH ALAN'S WORK WITH OUR GROUP, WE PUT TOGETHER A SURVEY LOOKING AT PATTERNS AND CAREGIVER STRATEGIES. THAT'S WHAT I'LL REPORT ON NOW. SO THE AIM OF THIS PROJECT WAS TO REPORT ON THE STRATEGIES THAT WERE BEING EMPLOYED BY CAREGIVERS FOR HAVINGS WITH AS IS D IN ORDER TO PREVENT THIS BEHAVIOR AND PERCEIVED EFFECTIVENESS AND BURDEN OF USE AND COST. SO WHAT I'LL BE REPORTING ARE THE PERCEPTIONS OF THE CAREGIVERS AROUND WHAT THEY ARE DOING AND THE ACTIVITIES THEY ARE EMPLOYING AT THIS POINT TO PREVENT ELOPEDMENT. THIS SURVEY WAS LAUNCHED A YEAR AGO BETWEEN MARCH AND SEPTEMBER OF 2016. ONLY PARENTS OF CHILDREN BELOW THE AGE OF 18 WERE SURVEYED SO WE DON'T HAVE DATA ON THOSE 18 AND ABOVE AND THIS WAS TYPICAL OF OUR ASD COHORT WHO ALL HAD THEIR AUTISM SPECTRUM DISORDER VERIFIED THROUGH MULTIPLE MODALITIES AND THE QUESTIONNAIRE WAS CENTERED AROUND THE BASIC QUESTION. DOES YOUR TRIAL CHILD TRY TO LEAVE SAFE SPACES IN THE SUPERVISOR EVER CAREGIVERS? WITH THAT AS THE FUNDAMENTAL QUESTION, WE LOOKED AT THE CHILDREN'S DIAGNOSIS AND WATHEIR PATTERNS WERE AND CONSEQUENCES WERE AND HOW THE PARENTS RESPONDED AND WHAT PREVENTATIVE INTERVENTIONS WERE AND EFFECTIVENESS AND BURDEN AND SIDE EFFECTS AND ESTIMATED COSTS. WE HAD 867 PEOPLE THAT COMPLETED THESE STUDIES AT THE AMERICAN ACADEMY OF CHILD ADOLESCENT PSYCHIATRY AND AUTISM RESEARCH. THIS IS THE THIRD TIME THIS DATA HAS BEEN PRESENTED AND IN A RECENT REANALYSIS, I'M PRESENTING A RECENT REANALYSIS OF THIS DATA THAT WE HAVE DONE MORE RECENTLY CHILDREN AVERAGE ABOUT 11 YEARS OF AGE. IT WAS CLEARLY PREDOMINANTLY MALE THAT THEY WERE REPORTING ON. IT WAS PREDOMINANTLY WHITE POPULATION AND NON HISPANIC POPULATION. THIS IS CONSISTENT WITH THOSE WHO WERE REPRESENTED WITHIN THE AUTISM INTERACTIVE AUTISM NETWORK. THE AUTISMY IS VARIEDY WAS ON THE HIGHER SIDE WITH A MEAN SOCIAL RESPONSIVE SCALE T SCORE OF 90. PARENTS REPORTEDDED THAT 16% OF THEIR CHILDREN HAD INTWELL ELECTUAL DISABILITY. 31% HAD SOME SORT OF LANGUAGE DISORDER. HIGH RATES OF ADH. AND ANXIETY DISORDERS WERE ALSO REPORTED AS WELL. 20% OF THE CHILDREN HAVE PROBLEMS WITH AGGRESSION AND 24% OR 1-4 HAVE PROBLEMS WITH SELF INJURY. OF THESE 5-26 PARENTS, THIS GAVE US SOME SENSE OF THE FREQUENCY. WE ASKED THEM HOW OFTEN THESE PROBLEMS WERE OCCURRING AND 22% OF THEM SAID THAT IN THE PAST TWO YEARS THEIR CHILD HAD NO ATTEMPTS BUT 49% OR NEARLY HALF SAID THAT THEIR CHILDREN WERE HAVING OR HAD HAD AN ATTEMPT WITHIN THE PAST 1-2 YEARS AND IN FACT A THIRD OF THEM, OR 29% REPORT THAT THEIR CHILDREN WERE HAVING AT LEAST ONE ATTEMPT PER WEEK. VERY HIGH RATES THERE. THE CHILDREN WERE ELOPING AS OTHER STORIES LIKE LORI TOLD ALREADY, PREDOMINANTLY FROM HOME BUT THEY HAD PROBLEMS IN PUBLIC PLACES SUCH AS STORES, AND IN THE CLASSROOMS, 41% EVELOPMENT RATE AND TRANSITIONS FROM ONE PLACE TO ANOTHER CHILDREN WERE RUNNING AWAY. THEY FELT THAT THEY WERE -- THAT THESE WERE OCCURRING A BUNCH OF DIFFERENT SITUATIONS SO 43% WERE ESCAPEING, 40% IN STRESSFUL ENVIRONMENT AND 24% ESCAPED WHEN THERE WAS A CONFLICT THAT THEY WANTED TO ESCAPE FROM. 38% REPORTED SENSORY PROBLEMS, PARTICULARLY NOISE STANDING IN THEIR WAY OR SOME OTHER UNCOMFORTABLE SENSORY EXPERIENCE. SOMETIMES IT WAS PURELY OUT OF INTEREST ABOUT WHAT WAS GOING ON. 27% WERE PURSUED BECAUSE THEY HAD SOME SPECIAL INTEREST IN DOING SOMETHING SUCH AS REACHING OR PLAYING FOR A TOY, REACHING A FAVORITE FOOD. AND THEN THERE WERE SOME CHILDREN WHO WERE FELT TO DO DID ON THE BASIS OF IMPUSSIVITY WHERE THEY WERE UNDER STIMULATED OR CENTERED IN A BORING ENVIRONMENT. 96% OF THEM WERE USING AT LEAST ONE INTERVENTION TO TRY TO PREVENT THEIR CHILDREN FROM WANDERING FURTHER. OVERWHELMINGLY, PEOPLE WERE DOING WHAT I CATEGORIZE AS ENVIRONMENTAL STRATEGIES. SO HALF OF THEM HAD DEAD BOLTS INSTALLED IN THEIR HOUSE TO ENSURE THE CHILD COULDN'T LEAVE. HALF HAD SPECIAL LATCHES PUT ON THEIR DOORWAYS AND MORE THAN A THIRD WERE PUTTING UP SPECIAL GATES TO TRY TO KEEP THE CHILD IN ESCRAPING. MANY WERE ALSO EMPLOYING OTHER TYPES OF SERVICES SUCH AS BEHAVIORAL PSYCHOLOGY, ASSISTANCE, USE OF SOCIAL STORY MODALITIES OR HAVING A ONE-ON-ONE AIDE TO TRY TO PREVENT THEIR CHILD FROM ELOPING OR WANDERING AWAY. SMALLER NUMBER OF SIGNIFICANT NUMBER ARE USING DIFFERENT TYPES OF TRACKING DEVICES. 90% REPORTED -- 19% HAD A GPS TRACKER AND THOSE WHO DID NOT USE ELECTRONIC DEVICES MANY WERE STILL USING IDs SUCH AS BRACE LESS, SHOE TIES, MEDICAL BROUGHT LETS. SO PARENTS ARE TRYING MANY, MANY DIFFERENT WAYS TO TRY TO KEEP THEIR CHILDREN SAFE. HOW EFFECTIVE ARE THESE? WE WANTED TO GET A PARENT'S PERCEPTION ABOUT THESE STRATEGIES AND HOW WELL THEY WERE WORKING. AND IN OVER ALL THEY FELT THAT THERE WAS GOOD OR VERY GOOD EFFECTIVENESS. ABOUT 75%. IN THOSE FAMILIES WHO HAD HIGH RATES OF ELOPEDMENT, THEY REPORTED EFFECTIVENESS 61%. SO DESPITE THEIR BEST EFFORTS THEY WERE STILL HAVING MAJOR CHALLENGES. THE MEAN NUMBER OF INTERVENTION THAT IS THEY TRIED WAS SIXES. BUD STANDARD DEVIATION QUITE WIDE SO PARENTS WERE TRYING MANY, MANY THINGS TO TRY TO KEEP THEIR CHILDREN SAFE AND OF COURSE THE HIGHER RATES OF ELOPEDMENT OF THEIR CHILDREN THE MORE THEY WERE TRIED WE WERE CONCERNED ABOUT THE FINANCIAL BURDEN FOR THESE FAMILIES AND YOU CAN SEE THAT FAMILIES OF CHILDREN WHO HAVE HIGH RATES OF ELOPEMENT, THAT IS AT LEAST ONCE A WEEK, SPENDING MORE THAN 5000 DOLLARS OUT OF THEIR POCKET TO TRY TO KEEP THEIR CHILDREN SAFE AND OBVIOUSLY, THERE IS SAY VERY HIGH SENSE OF BURDEN THAT ALL OF THESE FAMILIES ARE FEELING AND WORRIED AROUND THIS. SO IS THIS IS A CRISIS FOR FAMILIES. IT TAKES TIME AND ENERGY AND CONCERN. AS LORI SO WELL HIGHLIGHTED TODAY. SO, THE QUESTION IS S WHAT DO THEY FEEL WAS THE MOST USEFUL TO THEM? AND WHAT WERE THE BURDENS ATTACHED TO THEM? WEIGH CATEGORIZE THEM INTO FOUR CATEGORIES. THOSE THAT WERE FELT TO BE GOOD AS WELL AS COST EFFECTIVE WERE PUTTING UP WINDOW BARS, FENCING, AND PROJECT LIFESAVER BRACELETS. THAT WAS GOOD AND COST EFFECTIVE THERE WERE SOME ACCESS MODALITIES THAT PEOPLE LIKED BUT UNFORTUNATELY, ACCESS WAS LIMITED. SO HOME BEHAVIORAL SPECIALISTS WERE FELT TO BE EFFECTIVE BUT THAT TENDS TO BE LIMITED BECAUSE IT TENDS TO BE COSTLY AND FAMILIES NEED TO BE ABLE TO ACCESS THAT THROUGH INSURANCE THAT THEY MAY HAVE, HEALTH INSURANCE OR OTHER INSURANCES. AND SCHOOL AIDES ALSO WERE FELT TO BE REALLY QUITE EFFECTIVE WITH MINIMAL BURDENS AND NO DIRECT COST TO FAMILIES AROUND THAT BUT IT IS LIMITED BECAUSE THE SCHOOL HAS TO AGREE TO PROVIDE THAT FOR THE FAMILIES. SERVICE ANIMALS WERE FOUND TO BE QUITE EFFECTIVE BUT THE BURDEN WAS FELT TO BE FAIRLY HIGH AT BRINGING A PET AND DEALING WITH A PET IN THE HOME. AND ONES THAT PEOPLE ARE QUICK TO THINK OF BECAUSE THEY ARE COOL AND HIGH-TECH, ARE SECURITY CAMURACY AND GPS TRACKERS. THE EFFECTIVENESS WAS NOT CLEARLY AS FELT -- NOT FELT TO BE AS CLEARLY AS EFFECTIVE AS THESE LOWER-TECH DEVICES AND OF COURSE THEY HAVE SIGNIFICANT COSTS ATTACHED TO THEM FROM THE MEDICAL SPHERE OF THE QUESTION, IS MEDICATION IMPORTANT AND DOES THAT PLAY A ROLE? AND AGAIN, THIS IS PARENT PERCEPTION. HALF OF THE PARENTS WERE DESCRIBED THEIR CHILDREN AS TAKING A PSYCHIATRIC MEDICATION AND 16% SAID THEY WERE SPECIFICALLY TAKING IT BECAUSE OF THEIR CHILD'S TENDENCY TO WANDERING AND ELOPEMENT. AND YOU CAN SEE THE CATEGORIES ARE ACROSS-THE-BOARD OF THE TYPES OF MEDICATION THAT PEOPLE ARE BEING TREATED WITH WITH THE HIGHEST RATES SILENT HIGHEST IN CHILDREN WITH AUTISM AND THAT'S ANTIPSYCHOTIC MEDICATIONS, ADH. AND ANTI-DEPRESSANTS. THOSE THAT THEY FELT WERE FELT TO BE MOST EFFECTIVE WHERE YOU SEE A LABEL HERE. SO THE BENZ DIE AS PENE WERE REPORTED AS THE MOST EFFECTIVE. THE STIMULANT MEDICATIONS LESS EFFECTIVE FOR THE ELOPEMENT BEHAVIOR. SO, IN CONCLUSION, WE FELT THAT SIMPLE ENVIRONMENTAL AND BEHAVIORAL INTERVENTIONS ARE GENERALLY RATED BY CAREGIVERS AS COST EFFECTIVE AND MUCH MORE EFFECTIVE THAN MEDICATIONS INTRODUCING ELOPEMENT. MEDICATIONS ARE GENERALLY PERCEIVED AS INEFFECTIVE OF HIGH RATES OF SIDE EFFECTS AND QUESTIONS THAT REMAIN THAT THE POINT ARE FOR INTERVENTIONS THAT ARE RATED AS HIGHLY EFFECTIVE AND COMMONLY USED, WHAT ARE THE OBSTACLES OF THE LIMITATIONS? MAYBE WE NEED TO LOOK AT THESE? SO FENCING IS A TREMENDOUS COST BURDEN FOR MANY FAMILIES OR SCHOOL SYSTEMS FOR THAT MATTER. AVAILABILITY IS A PROBLEM IN TERMS OF HAVING PERSONAL AIDES IN SCHOOL OR AT HOME AND SIMILARLY WITH BEHAVIORAL SPECIALISTS. AND THEN THINGS LIKE DOOR ALARMS REPRESENT A MAJOR BURDEN AND HASSLE FOR FAMILIES. WE DON'T KNOW IF THEIR SUBTYPES THAT WILL REQUIRE DIFFERENT PREVENTION STRATEGIES AND WE HOPE TO GET TO THAT WITH OUR DATA. WE DON'T YET HAVE THAT. AND SO, AT SUSAN'S INVITATION, DR. DANIELS, I'M GOING TO BRING UP ANOTHER IMPORTANT ISSUE TO US BECAUSE FOR ME, I'M A DEVELOPMENTAL PEDIATRICIAN. FOR ME, WANDERING AND ELOPEMENT IS A HEALTH CRISIS. WE ARE TALKING ABOUT CHILDREN GETTING ILL AND DYING AND REALLY QUITE LIMITED ATTENTION FROM THE HEALTH CARE ESTABLISHMENT AROUND THIS. BUT SIMILARLY, I THINK WE ARE SEEING THE SAME IN TERMS OF SUICIDALITY AND AUTISM. A BIG UNTOLD STORY IS HERE THAT NEEDS TO BE CONSIDERED AS WE GO FORWARD. AND I WILL TELL YOU THERE IS VERY LITTLE RESEARCH ON SUICIDALITY IN AUTISM. THERE ARE JUST TWO KEY PAPERS, ONE OUT OF THE U.K. BY DR.S CASSIDY AND GROUP WHERE THEY LOOKED AT ADULTS WITH ASPERGER'S SYNDROME AND TWO-THIRDS OF THOSE ADULTS WERE CONTEMPLATING SUICIDE COMPARED TO 17% OF THE GENERAL POPULATION. AND A THIRD HAD ACTUALLY PLANNED OR ATTEMPTED SUICIDE. THESE ARE ADULTS WITH ASPERGER'S DISORDER. IN CONTRAST TO OTHER THINGS THAT WE SEE IN THE AUTISM POPULATION, THE RISK OF GREATEST IN WOMEN WITH ASPERGER'S DISORDER. WHICH IS JUST THE OPPOSITE OF SUICIDE BEHAVIORS IN THE GENERAL POPULATION. IN SWEDEN, THEY TOOK A LOOK AT THEIR MASSIVE DATA SAMPLES AND BETWEEN NINE 87 AND 2009 -- NINE 87 AND 2009 -- THEY FOUND SUICIDE WAS THE LEADING CAUSE OF PREMATURE DEATH IN POPULATIONS WITH ASD. SO IF THIS IS NOT A HEALTH ISSUE, THEN WHAT IS NOT? THEY JUST LOOKED AT CHILDREN WHO HAD A DIAGNOSIS OF AS IS D. OF THE 104 CHILDREN WHO HAD AS IS D BEING SCREENED IN THE EMERGENCY DEPARTMENT, 31 OF THEM SCREENED POSITIVE AS BEING A SUICIDE RISK. SO, 1-3 CHILDREN COMING INTO THE EMERGENCY ROOM PEDIATRIC EMERGENCY ROOM WITH AUTISM HAS SOME SORT OF SUICIDE RISK. AND TWO-THIRDS OF THEM WITHOUT THE SCREENING PROCESS, WOULD NOT HAVE BEEN IDENTIFIED AS HAVING ANY SORT OF SUICIDEIDATION. OF THAT GROUP OF 104, 12 SUICIDE AMOUNTS AND I'M NOT GOING TO GO THROUGH THE CAUSES OF SUICIDE. BUT IT'S A WIDE RANGE OF THINGS WE SEE IN ALL POPULATIONS. AGAIN, THIS IS A MAJOR HEALTH CRISIS FROM MY PARTICULAR PERSPECTIVE. SO, WE HAVE JUST LAUNCHED IN APRIL, NATIONAL AUTISM AWARENESS MONTH, WHAT WE CALL IN THE MENTAL HEALTH SUICIDE BEHAVIOR QUESTIONNAIRE. SO JUST AS THE PARENTS WERE INFORMED AROUND SUICIDE, WE LAUNCHED A SURVEY -- ON ELOPEMENT AND WANDERING, WE LAUNCHED A SURVEY LOOKING AT SUICIDAL BEHAVIORS AND OTHER MENTAL HEALTH ISSUES TO ESTABLISH A CLEAR UNDERSTANDING. AND THE SURVEY IS ACTIVELY ONGOING AT THIS POINT IN TIME. WE ARE AGAIN JUST LOOKING AT CHILDREN BECAUSE OF ISSUES OF INVESTIGATION LIMITATION OF INVESTIGATION WITH ADULTS. BUT WE ARE ALSO ABLE TO SURVEY PARENTS WHO HAVE A DEPENDENT ADULT AS WELL. WE RIGHT NOW HAVE ABOUT 55,000 PARTICIPANTS AT IAN AND SO, THIS WAS DISTRIBUTED ON LINE TO FAMILIES. THE QUESTIONNAIRES ARE LAID OUT AS YOU SEE HERE. WE WANTED TO FIND OUT GENERALLY NOT JUST SUICIDE BUT WHAT IS THE MENTAL HEALTH HISTORY THAT THEIR CHILDREN OR DEPENDENT ADULT ARE EXPERIENCING? WHAT KIND OF MARRIAGE FAMILY LIFE EVENTS ARE OCCURRING? WHAT ARE THE LIFE EVENTS THAT ARE OCCURRING FOR THE INDIVIDUAL WITH AUTISM? AND WHAT ARE THE SUICIDE BEHAVIORS THAT THAT PERSON EXHIBITING? AND SO, WE ARE ALSO GOING TO FIND OUT MORE ABOUT WHO THESE CHILDREN AND DEPENDENT ADULTS ARE. THE LEAD QUESTION AROUND SUICIDE IS, HAS THIS PERSON EVER EXPRESS BODIES THOUGHTS EAR FEELINGS ABOUT WANTING TO DIE OR NOT WANTING TO LIVE ANYMORE? HAVE THEY EVER EXPRESSED THOUGHTS OR FEELINGS ABOUT WANTING TO END HIS OR HER LIFE? AND HAVE THEY INDICATED THAT HE OR SHE HAD A PLAN TO END HIS OR HER LIFE? AND HAVE THEY EVER FRANKLY TRIED TO END LIFE? THIS IS A VERY SENSITIVE SURVEY. THERE ARE MULTIPLE WARNINGS TO PROVIDE FAMILIES AS THEY FILL THIS OUT. WE THINK THIS IS IMPORTANT INFORMATION THAT WE DON'T KNOW IN THE UNITED STATES AND REALLY IS IMPORTANT TO THE AUTISM COMMUNITY. SO, WHAT I CANNOT SHARE WITH YOU BY SLIDES, BUT I CAN SHARE WITH YOU BY WORD IS THAT WE SO FAR, WE ARE RUNNING THIS SURVEY THROUGH THE END OF SEPTEMBER. WE HAD 680 RESPONSES TO DATE. WE DID A PRELIMINARY ANALYSIS OF THIS IN MAY FOR SUICIDALITY IN AUTISM SUMMIT THAT LORI AND I ATTENDED IN ENGLAND. AND SO, AS OUR REPORTS IN MAY, THERE WAS PASSIVE SUICIDAL IDEATION REPORTED IN 42% OF THE CHILDREN OR DEPENDENT ADULTS. ACTIVEIDEATION IN 23%. ALMOST 10% HAD SOME SORT OF SUICIDAL PLAN AND 4% HAD SUICIDAL ATTEMPTS. REALLY QUITE FASCINATING IS WE ASKED WHEN THEY FIRST HAD THEIR SUICIDAL IDEATION BECAUSE WE WERE THINKING ABOUT THIS AS A PROBLEM IN TEENS AND YOUNG ADULTS. IN FACT THE FIRST SIGNS OF PASSIVE OR ACTIVEIDATION WERE OCCURRING AS YOUNG AS 8 AND THE MEDIAN AGE WAS 10 YEARS OF AGE THAT CHILDREN ARE STARTING TO SHOW WORRY ABOUT SELF-WORTH AND POSSIBLE ENDING THEIR LIFE. THE MEDIAN AGE FOR HAVING A SUICIDAL PLAN WAS 12. AGAIN BEGINNING AS EARLY AS 8. AND THE MEDIAN AGE FOR AN ACTUAL ATTEMPT WAS 14. AND WITH EARLIEST ATTEMPT BEING REPORTED AS 9. AND SO, WE WILL BE COLLECTING THIS DATA AGAIN THROUGH THE END OF SEPTEMBER. WE THINK THIS IS GOING TO BE VERY IMPORTANT DATA TO INFORM CERTAINLY THE COMMITTEE AS WELL AS UNITED STATES POLICYMAKERS, ADVOCATES AND RESEARCHERS. AND BUT THIS IS PROBABLY GETTING ATTENTION WORLDWIDE AT THIS POINT AND I THINK IT IS THE NEXT STEP WE ALL NEED TO TAKE. I THINK WE HAVE DONE REALLY SOME GREAT WORK HERE IN TERMS OF EXPOSING THE PROBLEMS AROUND WANDERING AND ELOPEMENT AND THE FOR EXAMPLE ARE STILL THROUGHOUT AND WE NEED TO DO THE SAME AROUND SUICIDE BECAUSE NOTHING IS MORE IMPORTANT FROM MY PERCEPTION AS A PHYSICIAN, AROUND ISSUE SYSTEM OF HEALTH AND LIFE AROUND CHILDREN AND ADULTS WITH AUTISM SPECTRUM DISORDER. THANK YOU. [ APPLAUSE ] >> JOSHUA GORDON: THANK YOU, FOR ANOTHER COMPELLING PRESENTATION, BOTH ON WANDERING AND ON SUICIDE AND WE HAVE HAD PRESENTATIONS HERE ON THE RISK OF PREMATURE DEATH AND AUTISM AND ADDING SUICIDE TO THE LIST OF POSSIBLE CONCERNS IS IMPORTANT. WE CAN NOW OPEN IT UP FOR QUESTIONS OR COMMENTS FROM THE COMMITTEE THAT CAN BE ADDRESSED TO EITHER PRESENTER. GO AHEAD, JOHN. >> JOHN: I THINK THAT IT IS CLEAR FROM THESE PRESENTATIONS THAT SUICIDE IS A MAJOR PROBLEM IN THE COMMUNITY, AND WHEN WE LOOK AT THAT IN COMBINATION WITH THE ELOPEMENT AND WANDERING, ONE THING THAT I TAKE AWAY FROM THIS IS TO BE BLUNT, THERE IS SAY LOT OF BULLSHIT IN WISHFUL THINKING IN THE WAY WE ARE PUTTING THIS RESEARCH TOGETHER BECAUSE IF I READ THOSE SLIDES RIGHT, WE HAVE THE STATEMENTS OF WHAT THEY DESCRIBED AS THE ASPERGER PEOPLE WHO CAN AR TICK LATE, I GUESS, WHY THEY RAN AWAY, SAYING THEY MOSTLY RAN AWAY TO ESCAPE STRESSFUL SITUATIONS AND THEN AGAIN, IF I READ THIS CORRECTLY, THE AUTISTIC PEOPLE WHO PRESUMABLY CAN'T ARTICULATE FOR THEMSELVES, THEIR PARENTS SAID, HE RAN AWAY BECAUSE HE WAS CURIOUS. FOR CHRIST SAKE, FOLKS! DO WE TRULY BELIEVE THAT? DO WE TRULY BELIEVE THAT THE PEOPLE WHO ARE ARTICULATE RAN AWAY BECAUSE IT WAS STRESSFUL AND EVERYONE ELSE RAN AWAY BECAUSE THEY WERE SMILING AND CURIOUS IN AND I THINK WHEN WE HAVE THAT KIND OF THINKING, IT'S NO WONDER WE DON'T SOLVE THIS PROBLEM. I LOOK AT THOSE SLIDES AND WHAT I SAW TIME AND AGAIN WAS, STRESSFUL SITUATIONS CAUSE AUTISTIC CHILDREN TO FLEE. AND I THINK MYSELF AS AN ADULT. AND I THINK ABOUT ALL OF YOU. HOW MANY TIMES HAVE YOU, MY FELLOW COMMITTEE MEMBERS SAID, I GOT TO GET OUT OF HERE? BUT WE ARE ADULTS SO WE ARE NOT ELOPING. WE ARE GOING SOMEWHERE ELSE. EVERY AUTISTIC PERSON I KNOW SAYS IS WITH SOME REGULARITY, I NEED TO GO INTO A QUIET SPACE. I NEED TO COOL DOWN. I NEED SOME TIME FOR MYSELF. AND AGAIN, IT IS ORDINARY. BUT FOR THESE CHILDREN, SOMEHOW IT IS ELOPEMENT. IT'S A SPECIAL UNIQUE CONDITION. AND I THINK WE HAVE TO RECOGNIZE, THIS IS AN ORDINARY THING WE CREATE STRESSFUL SITUATIONS AND KIDS WHO HAVE NO OTHER COPING MECHANISM, RESPOND BY RUNNING AWAY. AND WE ARE PUTTING OUR HEADS IN THE SAND UNTIL WE FACE THAT. AND I GUESS IT JUST -- I LISTEN TO THE EXTREME SERIOUSNESS OF THE SITUATION SO MANY AUTISTIC PEOPLE DIE, AND WE ARE NOT FACING WHAT IS TO ME, AN OBVIOUS TRUTH. AM I NUTS HERE OR -- WHAT DO YOU FOLKS THINK? >> JOSHUA GORDON: ONE THING THAT DID ASTOUND ME AND THAT'S WHY I ASKED THE QUESTION IN THE MOMENT ABOUT THE NUMBERS ON THE BOTTOM OF THE SLIDE WAS THE PURE NUMBERS OF CASES. AND OBVIOUSLY THIS IS JUST -- IT IS PROBABLY NOT COMPREHENSIVE. IT'S BEST ATTEMPT BUT IT'S A LOT OF INDIVIDUALS DYING. I WONDER IF WE MIGHT HAVE A RESPONSE FROM EITHER OF THE PRESENTERS FIRST ABOUT THE SPECIFICALLY ABOUT WHAT THE RESEARCH SAYS IN TERMS OF STRESS AS A INDUCER OF ELOPEMENT AND/OR SUICIDE AND/OR THE PROTECTIVE MEASURES THAT ONE MIGHT TAKE IN THAT CONTEXT TO TRY TO REDUCE IT. AND THEN WE'LL HAVE SOME MORE COMMENTS FROM THE COMMITTEE. >> JOHN. THIS IS THE RULE NOT THE EXCEPTION, JOSH. I SEEN SUICIDE IN ALMOST EVERY AUTISTIC PERSON I KNOW. >> IT IS QUITE CLEAR THAT ANXIETY, STRESS, ARE REALLY KEY COMPONENTS HERE. THAT ARE DRIVING MANY OF THE PEOPLE TO THIS ACTION. >> [ OFF MICROPHONE ] >> DR. LIPKIN: THIS IS PURELY PARENT REPORT. IT WAS THE WAY THE QUESTION WAS FRAMED THAT I THINK WE HAVE TO QUESTION ABOUT THAT. I THINK THIS IS ALL THE INFORMATION WE HAVE. THIS IS ALL THE DATA. I WOULD LIKE TO SPUR OTHER RAMPERS TO REALLY DIG DEEPER IN THE QUESTIONS YOU'RE ASKING, JOHN. BECAUSE WE KNOW IT'S A PROBLEM. WE REALLY DON'T QUITE REALLY UNDERSTAND THE DEPTH OF WHAT THE ISSUES ARE THAT ARE DRIVING. >> LORI MCILWAIN: I CAN GIVE YOU SOME EXAMPLES. WE HAD A 13-YEAR-OLD GIRL WHO WAS ON STATEN ISLANDFULLY WAY. SHE DID NOT WANT TO GO TO HER FATHER'S HOUSE. SHE LEAPT FROM THE SUV INTO ONCOMING TRAFFIC. SO SHE JUMPED FROM THE CAR. ANOTHER CASE LIKE THAT WAS A TEENAGER WHO GOT INTO AN ARGUMENT WITH HIS FOSTER PARENT, WALKED OUT OF THE CAR AND WALKED STRAIGHT INTO TRAFFIC. I WAS READING A SPECTRUM ARTICLE ABOUT SUICIDALITY A COUPLE OF YEARS AGO. A STORY OF BIANCA, A 15-YEAR-OLD GIRL WHO DID NOT GET THE CHICKEN DINNER THAT SHE LOVES. THIS DISAPPOINTED HER GREATLY AND SHE SPOKE OF, PLEASE IF YOU COULD JUST KILL ME NOW, WE CAN JUST BOTH GET THIS OVER WITH. SHE SAID IS THAT TO HER MOTHER. FAST FORWARD TWO YEARS, 17-YEAR-OLD BOY JUST IN FEBRUARY, LEFT HIS HOME BECAUSE HE DIDN'T GET THE SPAGHETTI DINNER HE WANTED. THESE SAME LIKE REALLY SMALL TRIGGERS TO US. THEY ARE HUGE TRIGGERS TO THESE INDIVIDUALS. NOW, THE 17-YEAR-OLD WHO LEFT HIS HOME, HE WAS STRUCK BY A CAR. HE COULD NOT TALK LIKE BIANCA, ACCORDING TO REPORTS. SO IF YOU'RE LOOKING AT BOTH CASES, THEY ARE LEAVING BECAUSE OF SOME TYPE OF ACUTE STRESS. AND THEY ARE RESPONDING IN A WAY IN EITHER THEY IMPULSIVELY WANT TO HARM THEMSELVES OR MAY NOT UNDERSTAND AND NOT CARE ABOUT WHAT THREATS COME ALONG SUCH AS TRAFFIC. THAT IS SOMETHING WE HAVE TO LOOK AT AND DECIPHER, ESPECIALLY IN THE NON-VERBAL KIDS WHO ARE GOING STRAIGHT TO THREATS. >> [ OFF MICROPHONE ] >> JOSHUA GORDON: JOHN F IT'S OKAY, I WANT TO MAKE SURE WE GET OTHER PEOPLE ON THE COMMITTEE. I HAVE GOT -- LET'S START WITH EGLIN. I HAVE LAURA, DAVID, JUDY, DAVID AND SAMANTHA. >> LAURA: THANK YOU BOTH FOR YOUR PRESENTATIONS. I WANTED TO QUICKLY SAY TO LORI, I'M A PARENT OF A 9 YEAR-OLD WITH AUTISM AND WE ARE RECIPIENTS OF THE BIG RED SAFETY BOX. AND THAT HAS ACTUALLY PREVENTED MY SON FROM WANDERING. HE JUST STARTED A COUPLE OF MONTHS AGO. SO THIS PRESENTATION IS VERY TIMELY IN MY PERSONAL LIFE. AND THE DOOR ALARM IN PARTICULAR IS JARRING BUT FOR GOOD REASON. SO THANK YOU FOR THAT FREE RESOURCE THAT YOU PROVIDED TO HUNDREDS OF FAMILIES. MY QUESTION TO FOLLOW-UP ON JOHN'S POINT TO DR. LIPKIN, IS THERE A WAY TO DISAGGREGATE YOUR DATA IN TERMS OF WHETHER THE CHILD HAS COMPLEX COMMUNICATION CHALLENGES OR LIMITED SPEECH SO THAT WE CAN ATTRIBUTE CAUSES THAT THE PARENTS REPORT TO THOSE CHILDREN OR INDIVIDUALS WHO MAY NOT BE ABLE TO ARTICULATE THE REASONS WHY AND THEN WE CAN MAYBE HAVE SOME MORE INFORMATION TO FILL IN THE GAP? >> DR. LIPKIN: ONE OF THE STRENGTHS OF THE GATA IS ONE OF THE WEAKNESSES, WHAT IT HAS BEEN CRITICIZED FOR. IT'S PURELY PARENTAL REPORTING. WE DON'T HAVE CLINIC DATA EXCEPT WHAT PARENTS REPORT. WE HAVE THEIR REPORT WHERE THE CHILD HAD INTELLECTUAL DISABILITIES WHERE THE CHILD HAD LANGUAGE DISORDERS. WE PROBABLY CAN'T DISAGGREGATE THAT. BUT, IT IS PARENTAL REPORT NOT BASED ON CLINICAL INFORMATION. >> JOSHUA GORDON: LAURA. OKAY. DAVID. >> DAVID: SO I WANTED TO AGREE WITH JOHN THAT I THINK IT'S CLEAR THAT STRESS AND ANXIETY IS UNDER APPRECIATED PARTICULARLY IN YOUNGER INDIVIDUALS WITH AUTISM WHO HAVE INTELLECTUAL DISABILITY OR LACK OF LANGUAGE. AND JOHN, I THINK TO SPEAK TO YOUR ISSUE, WE HAVE BEEN REALLY FOCUSING ON TRYING TO DIFFERENTIATE ANXIETY FROM THE SYMPTOMS OF AUTISM FOR THE LAST FEW YEARS. AND ONE OF THE THINGS THAT IMPRESSED ME IS THAT ONCE OUR CLINICIANS DETERMINED PARTICULARLY YOUNG CHILD HAS SEVERE ANXIETY, OFTENTIMES WHEN THEY GO TO THE PARENT AND SAY, DO YOU KNOW YOUR CHILD HAS ANXIETY? THE PARENTS SAY I HAD NO IDEA. A LOT OF THE SYMPTOMS THAT OUR CLINICIANS DETERMINE ARE ANXIETY DISORDER HAVE BEEN ASSUMED BY THE PARENTS TO BE JUST PART OF THE AUTISM. SO I THINK THAT THERE HAS TO BE INCREASED AWARENESS, PARTICULARLY IN SUBSETS OF THE AUTISTIC POPULATION, ABOUT WHAT ANXIETY REALLY IS AND THEN MAYBE THOSE CHARTS. AGAIN THIS IS PARENT REPORT BUT I SUSPECT A LOT OF OUR PATIENTS WHO WE SAY, YOUR CHILD HAS ANXIETY, HAD NO CLUE. SO THEY MAY BE MISINTERPRETING WHY THE CHILDREN ARE ELOPING. BUT IT REALLY ISN'T -- I AGREE, IT REALLY IS UNDERLYING ANXIETY DISORDER IS AND SEVERE STRESS THAT JUST WAS NOT APPRECIATED. >> JOSHUA GORDON: I SUSPECT THE ANSWER, GIVEN YOUR PREVIOUS ANSWERS, PAUL, BUT YOU SHOWED DATA THAT THE EFFICACIOUS MEDICATIONS WERE PREDOMINANTLY BENZO DIE AS PENES AND THAT MAY ALSO SPEAK TO THIS ANXIETY ISSUE. DO YOU KNOW IF THAT WAS THE REASON WHY OR THE THING THAT POPPED INTO MY HEAD WHEN URN SLOWING IT IS HOW THEY MAKE THEM GO TO SLEEP. BUT PERHAPS THEY ARE ACTUALLY TREATING IT IN UNDERLYING ANXIETY DISORDER REDUCING ACUTE STRESS RESPONSE. >> DR. LIPKIN: WE DON'T HAVE THAT GRANULARITY. WE WERE ASKING WHAT KIND OF THINGS THEY WERE USING FOR CHILD'S BEHAVIOR AND WE PROVIDED A LIST OF MEDICATIONS AND THEY CHECKED OFF THE ONES THEY HAD. SO WE DON'T QUITE KNOW. I WAS SURPRISED THAT THE BENZOS CAME OUT SO HIGH. THEY ARE NOT THAT WIDELY PRESCRIBED IN GENERAL BUT I THINK IT IS TELLING THAT THE MEDICATIONS THAT ARE MORE WIDELY USED WHEN THEY BE STIMULANTS FOR ADHD OR ANXIETY MEDICATIONS, FAMILIES ARE NOT FINDING THOSE MORE COMMONLY USED MEDICATIONS AS EFFECTIVE. >> JOSHUA GORDON: PARTICULARLY THE ANTIPSYCHOTICS WHICH MIGHT BE PRESCRIBED FOR ADOLESCENTS. JUDY? DID YOU HAVE A QUESTION? NO. SORRY. SAMANTHA. >> SAMANTHA: SORRY. I HAVE A FEW COMMENTS. I'M JUST GOING TO APOLOGIZE ADVANCE FOR HAVING A FEW THINGS TO SAY. ONE THING THAT REALLY STRUCK OUT AT ME IN THE FIRST PRESENTATION WAS THE ELEVATED RISK TO THE AFRICAN-AMERICAN COMMUNITY. WE ARE WORKING ON OUR OWN SAFETY SURVEYS AS WELL AND WHAT WE ARE FINDING IS THAT BECAUSE AFRICAN-AMERICAN INDIVIDUALS ARE AT HIGHER RISK OF POLICE VIOLENCE, THERE IS A REAL SENSE IN THE COMMUNITY THAT WE NEED MORE ALTERNATIVES, MORE WAYS THAT WE CAN GET HELP FOR A MISSING CHILD THAT DON'T INVOLVE DEPLOYING ARMED POLICE TO THE SCENE. WE HAVE DEFINITELY HIGH PROFILE CASES LIKE AR THAT WOULDO WHO WAS WENT MISSING FROM HIS GROUP HOME, HIS AIDE WAS RIGHT THERE BUT HE WAS NOT WHERE HE WAS SUPPOSED TO BE AND A POLICE OFFICER SHOT AT HIM. AND TRAUMATIZED HIM AND NOW HE IS INSTITUTIONALIZED BECAUSE HE CAN'T GO BACK TO HIS GROUP HOME AFTER THAT TRAUMA. AND SO, I THINK THAT IT IS REALLY IMPORTANT WHEN WE TALK ABOUT TRAINING POLICE THAT WE ALSO START LOOKING AT INTERVENTIONS THAT DON'T INVOLVE POLICE AT ALL. AND THAT CAN BE ANOTHER REASON WHY TRACKING DEVICES OR OTHER THINGS THAT MIGHT INVOLVE GETTING POLICE TO THE SCENE MIGHT BE AN ISSUE. WE ALSO NEED TO WORRY ABOUT TRAINING THAT IS NOT THE RIGHT TRAINING. THERE IS A CASE A FEW YEARS AGO IN WHICH AN EXPERIENCE HYPERWHO WAS ALSO AUTISTIC WAS LOST IN THE ARIZONA DESERT AND FOUND NEAR A CREEK AND WHEN ASKED ABOUT WHY OR HOW DID YOU FIND THIS PERSON, THE POLICE OFFICER SAID, WELL, I KNEW THAT AUTISTIC PEOPLE WERE DRAWN TO WATER SO I LOOKED AT THE WATER. WELL, NORMAL PERSON WOULD SAY, HE WAS LOST IN A FRICKING DESERT SO IF HE IS STILL ALIVE THREE DAYS LATER AFTER HE WENT MISSING, HE IS PROBABLY NEAR SOME WATER. RIGHT? I DON'T KNOW WHAT OTHER PEOPLE LOOK FOR WHEN THEY ARE LOST IN THE DESERT. BUT YOU KNOW, MAYBE THAT IS SOMETHING YOU SHOULD CONSIDER. YOU SHOULD DEFINITELY LOOK NEAR WATER WHEN SOMEONE IS MISSING BUT I WOULD SAY THAT IS BECAUSE IF ANY CHILD IS MISSING, YOU SHOULD LOOK NEAR WATER BECAUSE IF THEY ARE NEAR WATER, THEY MIGHT BE DROWNED IN LIKE ONE OR TWO MINUTES SO YOU BETTER LOOK AT THE WATER AS FASTS AS YOU CAN AND THEN START LOOKING AT OTHER PLACES. THAT'S COMMON SENSE. >> THEY DON'T KNOW THAT THOUGH. >> I KNOW THEY DON'T. BUT I DON'T WANT -- I THINK WE NEED TO MAKE SURE THAT WE ARE NOT SORT EVER LIKE PERPETUATING A MYTH OF AUTISTIC PEOPLE THAT ARE SORT OF HUMAN DOUSING -- IMMEDIATELY GO TO THE WATER. YES, YOU SHOULD LOOK NEAR WATER BT I FEEL LIKE WE NEED TO MAKE SURE WE ARE MESSAGING THAT RIGHT. >> TO YOUR POINT, I MEAN I THINK THAT WE HAVE TO NOT MINIMIZE WHAT IS HAPPENING OUT THERE WITH THE WATER. SO JUST THIS IS REALLY JUST TO HELP FIRST RESPONDERS UNDERSTAND EXACTLY WHERE TO GO AS SOON AS POSSIBLE AND NOT JUST THEM. ALSO PARENTS. SO -- >> SAMANTHA: WHAT WORRIES ME IS ACCIDENTAL DROWNING IS THE LEADING CAUSE OF DEATH FOR ALL CHILDREN. THIS IS NOT AN AUTISM SPECIFIC THING AND FRANKLY YOUR STUDY, WHILE IT IS -- ABSOLUTELY SHOWING A HUGE PATTERN OF DROWNING DEATHS IN AUTISTIC CHILDREN, WE DIDN'T LOOK AT NON-AUTISTIC CHILDREN WANDERING AND WHAT THEIR CAUSE OF DEATH IS. WE JUST NEED TO BE VERY PRECISE WHEN WE MESSAGE ABOUT THIS THAT WATER IS DANGEROUS TO ALL CHILDREN. IT IS NOT BECAUSE WE ARE NECESSARILY DRAWN TO WATER BUT BECAUSE WATER IS A VERY FAST KILLER. I HAVE CHILDREN TOO. WE ARE PARANOID ABOUT THEM AROUND WATER. BECAUSE DROWNING IS A FAST AND SILENT KILLER. AND SO WE NEED TO MAKE SURE THAT THAT MESSAGE GETS OUT. WITH RESPECT TO SUICIDE, I REALLY WANT TO QUICKLY GET TO SUICIDE. I'M WORRIED AND I THINK I AGREE WITH JOHN HERE THAT CONFLATING SUICIDALITY AND WANDERING COULD BE A REAL PROBLEM. WE KNOW THAT PEOPLE ON THE AUTISM SPECTRUM HAVE BEEN DYING FROM SUICIDE FOR A VERY LONG TIME. IT'S NOT NEW. IF WE ARE SEEING MORE OF IT IN MEDIA ACCOUNTS OF WANDERING IT'S PROBABLY BECAUSE MEDIA IS TREATING ALL AUTISTIC MISSING PERSONS CASES AS WANDERING BECAUSE OF THE HEIGHTENED AWARENESS OF WANDERING. PEOPLE WHO ARE SUICIDAL AREN'T LOST. AND THE SOLUTIONS ARE PROBABLY NOT THE SAME. HAVING A DOOR ALARM OR HAVING A TRACKING DEVICE IS NOT GOING TO STOP SOMEONE FROM BEING SUICIDAL. IT MIGHT STOP SOMEONE FROM ACCIDENTLY GOING WHERE THEY -- TO A DANGEROUS PLACE. BUT IT'S NOT TO PREVENT SUICIDE. AND I'M NOT SURE THAT THAT IS GOING TO HELP AND I THINK WE NEED TO MAKE SURE THT WE ARE TALKING ABOUT THESE ISSUES SEPARATELY. AND WITH THE INVESTIGATION OF SUICIDALITY SURVEY, I'M REALLY CONCERNED THAT THE SURVEY IS ASKING PARENTS ABOUT SUICIDALITY AND NOT ASKING THE ACTUAL AUTISTIC PEOPLE ABOUT SUICIDALITY. SOMETIMES A PARENT HAS TO BE THERE TO ANSWER BECAUSE THE KID LITERALLY CAN'T BUT IF WE ARE NOT ASKING THE ACTUAL AUTISTIC PERSON, IT'S LIKE, WHAT DAVID MENTIONED. SOMETIMES PARENTS DON'T KNOW THEIR KID IS ANXIOUS. SOMETIMES PARENT DONE THEY ARE SUICIDAL. I DON'T KNOW IF WE WOULD HAVE A STUDY ON TEENAGED SUICIDALITY THAT DOESN'T ASK A TEENAGER IF THEY FELT SUICIDAL. AND THIS MIGHT HAVE SOME IRB HURDLES BUT IF WE WANT GOOD DATA, WE REALLY NEED TO DO THAT. >> JOSHUA GORDON: THANK YOU. ANYMORE COMMENTS OR QUESTIONS? LET'S GIVE DAVID A GO AHEAD. >> DAVID: I WAS WONDERING IF ANYONE, KNEW ABOUT WHETHER SAFETY PLANNING, WHICH IS A RIGOROUSLY TESTED INTERVENTION FOR REDUCING SUICIDE AMONG SUICIDAL PEOPLE, HAS BEEN ADAPTED OR APPLIES TO PEOPLE WITH AUTISM OR PEOPLE WITH DEVELOPMENTAL DISABILITIES AND WHETHER THIS MIGHT BE LIKE -- IT SEEMS LIKE A VERY LOGICAL FIT AND I DON'T KNOW IF IT IS SOMETHING THAT PERHAPS THE COMMITTEE WOULD WANT TO RECOMMEND AS A FERTILE AREA FOR EXPLORATION. >> JOSHUA GORDON: ANYBODY AWARE? I'M NOT AWARE. WE DO HAVE ONGOING STUDIES AT NIMH IN USING THE SCREENER THAT PAUL DISCUSSED, THE ASQ. AND ADAPTING SPECIFICALLY FOR AUTISM INDIVIDUALS AND IT IS UNDERGOING TESTING RIGHT NOW IN TWO DIFFERENT SITES, INPATIENT AND OUTPATIENT. BUT THAT IS JUST SCREENING. IT'S NOT ACTUALLY THEN WHAT DO YOU DO AS YOU CAN SEE THEY WILL SCREEN POSITIVE HIGH RATES AND THEN IF YOU THEN FOLLOW-UP, TWO-THIRDS OF THEM WILL HAVE SIGNIFICANT -- >> SOMETIMES WHEN THE RATES ARE REALLY HIGH, ESPECIALLY IF YOU COULD IDENTIFY SUBPOPULATIONS WHERE THE RATES ARE REALLY HIGH, MAYBE YOU DON'T NEED TO SCREEN. MAYBE WE OUGHT TO BE TALKING ABOUT SAFETY PLANNING WHICH IS SAY RELATIVELY LIGHT TOUCH. >> JOSHUA GORDON: WITH EVERYONE. >> DAVID: WITH EVERYONE OR WITH CERTAIN GROUPS OF PEOPLE WITH AUTISM WHO ARE AT HIGHER RISK. >> JOSHUA GORDON: I WOULD SAY THE POINT THAT PAUL ROSE WAS THAT IF YOU DON'T SCREEN, YOU WON'T IDENTIFY THEM FOLKS AT RISK BECAUSE TWO-THIRDS AREN'T GOING TO OTHERWISE EVIDENCE THATIDATION. MARCELLA? >> MARCELLA: THANK YOU. I'M ALSO A PARENT OF A CHILD THAT IS HIGH FUNCTIONING ON THE AUTISM SPECTRUM AND HE JUST TURNED 8 LAST WEEKEND. AND I NOTED TO SAY TWO THINGS SO I APOLOGIZE FOR TAKING SOME TIME. ONE IS, I DO WANT TO COME BACK TO THE CO-OCCURRING. MY CHILD WAS ALSO DIAGNOSED WITH ADHD AND SO, CLEARLY HE IS TAKING A DHD MEDICATION WHICH HAS TAKEN SOME TIME TO GET HIM ACCLIMATED TO. AND HE ALSO TAKES MELATONIN IN THE EVENING BECAUSE THE ANXIETY AND THE LACK OF SLEEP, WE LOVE TO HAVE SLEEP IN OUR HOUSE. SO, HAVING A CHILD GO TO SLEEP BEFORE 1 A.M AND GETTING UP AT 3:00 IS EXTREMELY HELPFUL. HOWEVER, YOU HAVE TO THINK ABOUT CO-OCCURRING. IF IT'S NOT MANAGED. IF THE SLEEP IS NOT MANAGED, HOW DOES THAT INFLUX INTO THE ANXIETY GOING ON AT SCHOOL WHEN HE WAS IN KINDERGARTEN WAS OUR FIRST EPISODE OF HIM LILT REALLY LEAVING A TEACHER THAT HE ABSOLUTELY ADORED AND THE PRINCIPAL FOUND HIM OUT ON THE STREET ON THE CURB BECAUSE HE WAS UPSET ABOUT SOMETHING. SO, YOU HAVE TO KIND OF TEASEUTE, IS THAT ANXIETY? IS IT ADHD? FRUSTRATION? A SOCIAL SKILL PIECEAT? THAT POINT IN TIME HE WASN'T DIAGNOSED. WE DIDN'T KNOW. I KNOW WE HAD SOME CONCERNS AND HE DOES GO TO MONTGOMERY COUNTY WHICH I HAVE TO SAY HAS QUITE A PHENOMENAL SERVICE FOR STUDENTS. SO I JUST THINK THAT IS ONE THING THAT MAYBE WE NEED TO THINK ABOUT AS WE ARE LOOKING AT RESEARCH. COMING BACK TO SAMANTHA'S POINT WHEN TALKING ABOUT ASKING THE CHILD OR THE YOUNG PERSON, FOR THE VERY FIRST TIME I THINK IT WAS IN MAY, MY SON FINALLY SAID, WHAT IF I RAN AWAY FROM HOME AND I NEVER CAME BACK BECAUSE I COULDN'T? AND WE DIDN'T KNOW WHAT THAT MEANT. SO WE ASKED HIM AND IT WAS THE FIRST TIME HE TALKED ABOUT DEATH. AND IT WAS OVER LEGOS. AND SO YOU SIT HERE AND GO, SOMETHING THAT SIMPLISTIC, HOW DOES HE KNOW ABOUT DEATH? HOW DOES HE KNOW ABOUT RUNNING AWAYAT? THIS POINT IN TIME HE WAS 7. WE NEVER SPOKE ABOUT HIM NOT BEING IN OUR HOME OR RUNNING AWAY. SO YOU DO WONDER, IS THAT PIECES HE PICKS UP AT SCHOOL AS WE ALL KNOW THEY ARE AROUND OTHER CHILDREN WHO WE DON'T KNOW ABOUT THOSE CONVERSATIONS. BUT TO KNOW THAT YOU CAN BE THAT YOUNG AND BE 7 YEARS OLD AND HAVE THE CONCEPT THAT YOU CAN RUN AWAY TO TRY TO FIND SAFETY BECAUSE YOU CAN'T DEAL WITH THE EMOTION OF WHATEVER IS OCCURRING AT HOME OR YOUR LEGO TIME IS BEING CUT OFF BECAUSE IT'S TIME TO GO TO BED. THO IT MAKES ME WONDER IF SAMANTHA BINGES UP A GOOD POINT, YES WE MIGHT HAVE SOME IRB CHALLENGES BUT IF WE ARE SPEAKING TO THE INDIVIDUAL THEMSELVES, WE MAY HAVE COMPLETELY DIFFERENT ANSWERS THAN WHAT MY HUSBAND AND I WOULD FILL OUT ON A QUESTIONNAIRE. THANK YOU. >> JOSHUA GORDON: DIRECT FOLLOW-UP? OR EGLIN AND THEN -- >> EGLIN: SO, I WANTED TO FOLLOW-UP ON THE FACT THAT BLACK FAMILIES ARE DISPROPORTIONATELY EFFECTED BY WANDERING. ED AND I'M WONDERING IF YOU KNOW OF ANY RESEARCH OR PRACTITIONERS WHO ARE FOCUSING ON INVESTIGATING MORE ABOUT THAT? BECAUSE THAT SEEMS TO BE A BIG ISSUE AND YET I RECALL THE SURVEY HAD 88% WHITE PARTICIPANTS IN ONE OF THE STUDIES REPORTED. SO HOW DO WE REACH THE BLACK AND AFRICAN MESH COMMUNITY? >> LORI MCILWAIN: THAT SAY GOOD POINT. I'M LOOKING FOR GUIDANCE FROM YOU. WE KNOW THAT THE PARTICIPATION AMONG THE AFRICAN-AMERICAN COMMUNITY IS NOT THERE. SO, FOR SURVEYS LIKICS AN AND OTHER RESEARCH STUDIES AND INITIATIVES, OUTREACH IS NEEDED. THESE ARE THE OUTCOMES IN MEDIA REPORTS. WE WERE ABLE TO GO IN AND LOOK AT THAT. IT'S IMPORTANT THAT WE CAN FOCUS SOME OF OUR EFFORTS ON THAT TYPE OF OUTREACH. THEY ARE NOT HEARING FROM US. AND SO WE NEED TO FIGURE OUT WAYS TO REACH THEM WITH THIS INFORMATION. BEFORE THANKSGIVING, BEFORE EASTER, BEFORE -- BEFORE EVERY HOLIDAY WE PUT OUT WARNINGS. WE PREPARE DON'T SCARE. WE PUT OUT WARNINGS TO CAREGIVERS THAT HEY, THIS IS -- YOUR CHILD THEIR WANDERING TENDENCY MAY INCREASE AND HERE IS WHAT YOU CAN DO. AND EVERY HOLIDAY THERE IS ALWAYS THAT ONE KID, THAT ONE FAMILY WE MISSED OR MAYBE MORE. IF YOU WE NEED TO FIND WAYS TO REACH THEM. IF WE DON'T HAVE PROGRAMS THROUGH LAW ENFORCEMENT AND FIREFIGHTERS, FIREFIGHTERS ARE GRATED. SAW LOTS OF ENTHUSIASM FOR THEM WHEN SEARCHING FOR KIDS AND HELPING OUT. IF WE HAVE PROGRAMS IN PLACE, THEN WE CAN REACH MORE ON THE GROUNDS. PEDIATRIC DEVELOPMENTAL PHYSICIANS CAN REACH MORE PEOPLE ON THE GROUND. AND THERE IS JUST NOT ENOUGH HAPPENING IN THE PEDIATRIC COMMUNITY ON THIS ISSUE. AND SO WHERE IS THE IDEAS ON WHAT TO DO FOR THAT? AND FOR PROGRAMS FOR OUR AFRICAN-AMERICAN COMMUNITIES AND OTHER COMMUNITIES THAT MAY BE UNDER SERVED. >> JOSHUA GORDON: LARRY AND THEN LINDA AND THEN THAT WILL BE IT BECAUSE WE HAVE TO GIVE DR. NOVA SOUTHEASTERN A CHANCE TO GIVE HIS REPORT. >> I WANT TO REITERIATED SOMETHING I SAID HERE FOR YEARS AND THAT WOULD BE, 3, 4, 5-YEAR-OLDS ARE WITHIN THE SCHOOL ENVIRONMENT, PRESCHOOL ENVIRONMENT WELL ARE TYPICALLY IDENTIFIED AS DEVELOPMENTAL DELAYED, SPEECH-LANGUAGE, I MEAN THAT IS JUST HOW IT IS. THAT'S HOW THE DATA READS. SO I THINK IT'S IMPORTANT WHEN YOU REPRESENT -- I KNOW YOU'RE SHAKING YOUR HEAD BUT I MAINTAIN THE DATA FOR 6 MILLION KIDS WITH DISABILITIES IN THE UNITED STATES. AND I CAN TELL YOU WE TRACK THE IDENTIFICATION AGES AND WE HAVE SOME IDEA OF WHY. AND PARENTS ARE SPECIFICALLY GIVEN THE OPTION TO HAVE THEIR CHILD IDENTIFIED AS DEVELOPMENTALLY DELAYED WHEN THEY ARE YOUNGER BECAUSE THAT IS HOW THEY WANT THEM IDENTIFIED. OR SPEECH-LANGUAGE. SO I THINK IT IS IMPORTANT WHEN YOU TALK ABOUT THOSE 3, 4, 5, 6-YEAR-OLDS EVEN YOU MIGHT WANT TO HAVE A CAVEAT THAT THESE ARE IN FACT SELF IDENTIFIED AND TYPICALLY MAYBE MORE SEVERELY INVOLVED IN TERMS OF THE CHILDREN, THAN IS WITHIN THE TYPICAL POPULATION. >> DR. LIPKIN: IT'S IMPORTANT YOU BRING THAT UP. WE ALWAYS SAY THESE ARE SELF IDENTIFIED FAMILIES AND THE LEVEL OF SEVERITY IS SPELLED OUT IN THE DATA. WHAT I WILL SAY IN TERMS OF THE SKEW IN AVERAGE, WE HAVE BEEN AROUND FOR 10 YEARS AT THIS POINT IN TIME. THE MEANIE AGE OF THE CHILDREN REGISTERED IN OUR SURVEY IS ABOUT 13-15 RIGHT NOW. AND WE ARE NOT REPRESENTING A YOUNGER COHORT. WE ARE ACTUALLY REPRESENTING AN OLDER COHORT THAT LINES UP WITH THE HISTORY OF OUR NETWORK. BUT YES, EVERY LARGE --S YOU KNOW BETTER THAN I, EVERY LARGE POPULATION-BASED SURVEY HAS SPECIFIC STRENGTHS AND SPECIFIC WEAKNESSES. WE DON'T PRETEND TO BE ANYTHING IN THE VOICE OF PARENTS HERE. AND I THINK THAT IS REALLY QUITE CRITICAL. >> JOSHUA GORDON: I'M GOING TO ASK THAT LINDA TO BE VERY BRIEF. >> LINDA: I WANTED TO RESPOND TO EGLIN'S QUESTION AND LORI'S RESPONSE RELATED TO THE LACK OF PARTICIPATION OR THE LACK OF NUMBERS TO THE AFRICAN-AMERICAN COMMUNITY AND HISPANIC COMMUNITY IN THE DATA THAT WE HAVE, NEVERMIND NATIVE-AMERICAN COMMUNITY. BUT THE ONLY WAY YOU'RE GOING TO GET THOSE COMMUNITIES INVOLVED IS BY WORKING WITH THE COMMUNITIES. I MEAN THAT HAS TO BE -- YOU ABSOLUTELY NEED SOME KIND OF COMMUNITY-BASED ENGAGEMENT, NOT SO MUCH OUTREACH BUT ENGAGEMENT. >> JOSHUA GORDON: THANK YOU VERY MUCH TO BOTH THE PRESENTERS. [ APPLAUSE ] NOW IT'S MY PLEASURE TO INTRODUCE THOMAS NOVOTNY THE -- NOW I CAN'T REMEMBER THE TITLE. DEPUTY SOMETHING OR OTHER. GO AHEAD. >> DR. NOVOTNY: THANK YOU, JOSH AND SUZANNE AND EVERYBODY. I'M VERY SORRY I'M SO LATE BUT I HAVE BEEN SITTING OUT IN THE GATE WAITING TO GET CLEARED IN. I GUESS WEARING A SUIT AND HAVING AN ID DOESN'T REALLY COUNT. BUT IT WAS -- USUALLY IT'S A VERY SMOOTH PROCESS AND SUSAN TAKES CARE OF ALL THE DETAILS AND SOMEHOW, SOME DOTS DIDN'T GET CONNECTED. I'M SORRY TO BE LATE. BUT I WANTED TO GIVE YOU A COUPLE OF UPDATES AND LET YOU KNOW THAT ON FRIDAY, WE COMPLETED THE FINAL INNER AGENCY REVIEW OF OUR AUTISM REPORT TO CONGRESS ON THE TRANSITION OF YOUTH ADULTS WITH AS IS D. AND ALL I CAN TELL YOU IS THAT THIS HAS BEEN A VERY THOROUGH PROCESS OF CLEARANCE AND I THINK WHAT WE HAVE COME UP WITH IS A VERY WELL-RESEARCHED EXPLORATION OF ALL OF THE ISSUES AND ALL OF THE EQUITIES ON AUTISM SPECTRUM DISORDER AND THE TRANSITION PHASE IN THE GOVERNMENT. AND WITH THE INPUT OF ALSO SOME OF THE STAKEHOLDERS AS WELL AS THE GAO REPORT, WHICH I THINK YOU ARE VERY FAMILIAR WITH RIGHT NOW. THAT MEANS THAT WE HAD TO SEND THIS AROUND NOT JUST THROUGH HHS BUT TO THE DEPARTMENT OF DEFENSE AND DEPARTMENT OF LABOR AND DEPARTMENT OF TRANSPORTATION AND SOCIAL SECURITY ADMINISTRATION AND EVERYBODY ELSE. AND IT WAS -- THAT TAKES TIME. IT LOOKS LIKE WE'LL BE ABLE TO GET THIS IN THE LAST REVIEW WAS MINIMAL COMMENTS AND I THINK WE ARE IN PRETTY GOOD SHAPE AND I WANT TO THANK LABOR AND EDUCATION FOR THEIR -- AND THE SOCIALITY SECURITY ADMINISTRATION FOR COMMENTS TOWARDS THE END. AND I THINK WHAT WE WILL BE ABLE TO DO IS HAVE A BIT OF A PUBLIC ROLL OUT FOR THIS AND I'M I CAN'T PROMISE THE EXACT TIME BUT I'M PRETTY SURE THERE ARE NO HANG UPS. THE REPORT GETS LOOKED AT ONE MORE TIME BY POLICY TEAM THAT IS THE POLITICAL TEAM IN HHS SO WE'LL HAVE SOME HELP FROM NIMH FOR PRINTING AND PRODUCTION AND WE'LL HAVE A JOURNAL ARTICLE THAT COMES WITH SOME OF THE RECOMMENDATIONS. AND I THINK IT'S BEEN A USEFUL PROCESS EVEN THOUGH IT'S BEEN ALMOST A YEAR OVERDUE TO CONGRESS BUT WE CAN DEAL WITH THE RESOURCES WE HAD. IT IS CERTAINLY EDUCATIONAL. WE HAVE ESTABLISHED MUCH MORE COMMUNICATION AND SOME OF THESE THINGS THAT BENEFITED I THINK THE IACC AS WELL IN THE PROCESS AND IT CERTAINLY WE HAVE ESTABLISHED A VERY GREAT COMMUNICATION PARTNERSHIP WITH SUSAN AND HER OFFICE AND MANY OF THE OTHER FOLKS THAT HAVE BEEN INTRODUCED. SO THAT PART I THINK ANSWERS ONE OF THE SUGGESTIONS OR REQUESTS FROM THE GAO REPORT, WHICH IS DO SOMETHING ABOUT COLLABORATION AND IMPROVE THAT AND I THINK WE HAVE. AND I THINK THAT IS SOMETHING WE'LL CONTINUE. AND I THINK WE BESTED FROM SOME RECOGNITION FROM SECRETARY PRICE. I PUT OUT A BLOG POST AT THE BEGINNING OF AUTISM AWARENESS MONTH IN APRIL AND THEN HE ALSO PUT ONE OUT AT THE END OF THE MONTH, WHICH WAS GOOD. SO IS THAT MEANS HE WAS PAYING ATTENTION AS WELL. SO THAT'S A GOOD SIGN, I THINK. AND THEN, ON THE SECOND THING THAT THE GAO RECOMMENDED IS THAT WE INTERACT AND CONNECT UP WITH SOMETHING CALLED THE FEDERAL PARTNERS IN TRANSITION. THIS WAS AN ONGOING QUASI FORMAL INNER AGENCY ACTIVITY INVOLVING SOCIAL SECURITY ADMINISTRATION, LABOR AND EDUCATION AND HHS TO A FAIRLY LIMITED DEGREE BUT THAT GROUP DEALS WITH TRANSITION IN GENERAL. THAT IS FOR ALL YOUTH TRANSITIONING TO ADULTHOOD AND THE SERVICES AND THE MEDICAL NEEDS AS WELL FOR THE GENERAL POPULATION. BUT NOW, I THINK WE HAVE ESTABLISHED A GOOD RAPPORT AND WE HAVE ACTUALLY PARTICIPATED IN SOME OF THE INNER AGENCY ACTIVITIES OF THAT GROUP TO MAKE SURE THAT AUTISM IS LOOKED AT AS ANOTHER PIECE OF RESPONSIBILITY AND AT LEAST AWARENESS. SO I THINK THAT WE HAVE ANSWERED WHAT THE GAO HAS REQUESTED OF US AND SO, I THINK WE WILL HOPEFULLY CONTINUE WITH THE INNER AGENCY WORK THAT HAS BEEN STARTED AND IT HAS BEEN AGAIN A GREAT EDUCATIONAL PROCESS FOR ALL OF THE MEMBERS ON THE COMMITTEE. SO I WANT TO THANK THEM. SEVERAL OF THEM ARE HERE. SO I WANT TO MAKE SURE THAT WE CONTINUE THAT. THAT WAS NOT THE ENDPOINT. THAT WAS THE STIMULANT RATHER THAN AN ENDPOINT. I'M HAPPY TO ANSWER ANY QUESTIONS. I DON'T WANT REALLY WANT TO BLOW THE COVER OF ALL OF THE THINGS THAT ARE IN THERE YET UNTIL IT IS ACTUALLY CLEARED OUT OF THE POLICY OFFICE. IN THE OCTOBER MEETING, I BELIEVE I'LL HAVE MORE TIME TO GO THROUGH THE DETAILS AND WE CAN DISCUSS IT IN MORE DETAIL. >> JOSHUA GORDON: WERE WE GOING TO HAVE THE FULL REPORT WHEN IT'S PUBLIC POSTED BO OUR SITE, THE IACC SITE? >> DR. DANIELS: YES. SO ONCE THE FINAL PRODUCTION DONE AND WE'LL SHARE THE COPIES HERE AT THE MEETING ON OCTOBER 24. >> JOSHUA GORDON: ARE THERE ANY QUESTIONS FOR DR. THOMAS NOVOTNY THE NATIONAL AUTISM COORDINATOR AND THE DEPUTY ASSISTANT SECRETARY OF HEALTH? ALL RIGHT. THANK YOU VERY MUCH, DR. THOMAS NOVOTNY. THE REASON WHY WE INTERRUPTED THE DISCUSSION, WHICH WE CAN NOW RESUME IS THAT HE DID HAVE TO LEAVE A LITTLE BIT BEFORE THE BREAK. IF THERE ARE ANY OTHER QUESTIONS OR COMMENTS ABOUT THE DISCUSSIONS ON ELOPEMENT OR SUICIDE, WE CAN RESUME THAT. I APOLOGIZE BECAUSE WE WERE IN THE MIDST OF IT AND I HAD TO INTERRUPT. JOHN, YOU WANT TO SAY SOMETHING? >> JOHN: I WOULD LIKE TO REMIND THE COMMITTEE THAT THIS CHILDHOOD IS ONLY A QUARTER OF THE LIFESPAN AND ONE OF THE THINGS THAT I THINK WE ON IIAC NEED TO KEEP IN MIND IS TO KEEP PRESSING RESEARCHERS TO TAKE THE MORE DIFFICULT PATH AND TRACK DOWN AUTISTIC ADULTS. I UNDERSTAND AUTISTIC ADULTS ARE HARDER TO FIND THAN CHILDREN WHO ARE IN READY SUPPLY IN CLINICS AND I UNDERSTAND WE DON'T HAVE PARENTS TO BRING US IN. BUT THAT IS MOST OF THE POPULATION. AND I THINK AS SCARY AS WHAT WE JUST HEARD, THE TRUE NUMBERS OF SUICIDE ARE LIKELY 3-4 TIMES HIGHER, RIGHT? BECAUSE THAT'S THE WHOLE POPULATION. AND I JUST WOULD LIKE EVERYONE TO KEEP THAT IN MIND. >> JOSHUA GORDON: I BELIEVE, PAUL, DID YOU HAVE SOME ADULTS IN THE SUICIDE STUDY AS I RECALL. CAN YOU REMIND US? >> DR. LIPKIN: THERE IS ONLY WHAT ARE DESCRIBED AS DEPENDENT ADULTS. SO THE REPORTER IS STILL A PARENT OR CAREGIVER. >> JOSHUA GORDON: SO THAT IS -- >> DR. LIPKIN: WE DON'T HAVE PRIMARY REPORTS FROM ADULTS. I WILL SAY THE ENGLISH HAVE BEEN DOING SOME RESEARCH AROUND THAT BUT THERE IS NOTHING LIKE THIS IN THE UNITED STATES YET. >> JOSHUA GORDON: LEWIS? >> LEWIS: I WANTED TO SAY JOHN, AND I THINK YOU KNOW THAT THE STUDY OCCURRED SEVERAL THOUSANDS OF DEPENDENT AND INDEPENDENT ADULTS SO THAT -- >> [ OFF MICROPHONE ] >> DR. LIPKIN: AND I'LL BUILD ON THAT. SPARK IN THIS AND TOGETHER WE PROBABLY REPRESENT -- IAN HAS ABOUT 2500 ADULTS WHO REGISTERED. OVER THE PAST YEAR, WE HAD A LOT OF FAMILIES WHO -- A LOT OF ADULTS WHO HAVE ELECTIVELY CHOSEN TO REGISTER ON THEIR OWN AND SPARK IS FINDING THE SAME. >> JOSHUA GORDON: JULIE AND THEN DIANE. >> JULIE: IT WILL ALSO BE IMPORTANT IN THE U.S., AND I KNOW THIS IS HAPPENED INTERNATIONALLY TO MAKE SURE THAT WE ARE THINKING ABOUT EMBEDDING SUICIDALITY AND MENTAL HEALTH QUESTIONS INTO STUDIES THAT AREN'T NECESSARILY ABOUT SUICIDE ATE AND MENTAL HEALTH. BECAUSE I THINK WE ALWAYS HAVE TO WORRY THAT IF WE ARE GETTING SAMPLES THAT ARE RESPONDING TO SURVEYS ABOUT THAT, THEN WE MAY BE INFLATING THE NUMBERS AND I'M NOT SUGGESTING THIS ISN'T A BIG PROBLEM BUT I THINK WE HAVE TO BE CAREFUL ABOUT THAT IF PARENTS GET AN INVITATION TO RESPOND TO A SURVEY ABOUT YOUR CHILD'S SUICIDALITY. ARE ALL FAMILIES GOING TO RESPOND? OR FAMILIES WHO MAY HAVE SOME CONCERN? I THINK WE DON'T KNOW. SO TO EMBED THESE QUESTIONS INTO LARGER SURVEYS -- AND I KNOW WE HAVE TO THINK CAREFULLY ABOUT THIS FROM IRB PER SUSPECTED I WAS, NOT NECESSARILY ABOUT THESE ISSUES, THE FAMILIES MAY GIVE US ANOTHER LOOK, MAYBE FOR ACCURATE OVER TIME ABOUT WHAT THE SCOPE OF THE PROBLEM IN ADULTS AND CHILDREN IN THE U.S. ARE. >> CAN I MAKE A COMMENT ON THAT? I AGREE OF COURSE. BUT THE RESEARCH COMMUNITY, THIS IS SAN AREA OF THE RESEARCH COMMUNITY IS VERY NERVOUS ABOUT ENTERING. AND THE IT'S EASIER TO AVOID IT. AND IT'S BEEN AVOIDED FOR A LONG TIME. THESE ARE VERY DIFFICULT THINGS TO ASK FAMILIES. VERY DIFFICULT THINGS TO RESEARCH. AND SO THE SOLUTION IS TO BE AVOIDED. SO THERE PROBABLY NEEDS TO BE CALLS TO ACTION ABOUT THE RESEARCH COMMUNITY TO LOOK AT THESE ISSUES AND IN MANY WAYS. I WILL SAY THE SAME GOES WITH WANDERING AS WELL. THIS IS NOT EASY RESEARCH TO BE DONE AND IT'S EASIER TO LOOK AT OTHER THINGS BUT I WILL COME BACK TO MY OTHER POINT. THESE ARE LIFE AND DEATH ISSUES AND ORGANIZATIONS LIKE THE NATIONAL INSTITUTES OF HEALTH, THE CDC, THIS NEEDS TO BE PERCEIVED OF AS CRITICAL AS ANY OTHER HEALTH ISSUE. >> DIANE: DON'T GO AWAY. I HAD A QUESTION ABOUT WHAT IS KNOWN ABOUT THE BIOLOGICAL -- WHAT BIOLOGICAL RESEARCH HAS BEEN DONE ABOUT THE ATTRACTION TO WATER AND THE NON DESERT SITUATION, WHICH I AGREE WITH SAMANTHA, THAT WOULD BE THE LOGICAL THING FOR ANYBODY. BUT SO MANY OF THESE CHILDREN ARE FOUND DEAD IN POOLS AND WHAT IS KNOWN AND IF WE DON'T KNOW A LOT, IS THAT AN OPPORTUNITY TO DO RESEARCH TO ADDRESS PREVENTION? >> DR. LIPKIN: I DON'T KNOW. I CAN'T ANSWER THAT. I DON'T KNOW IF ANYBODY AT THE TABLE CAN. LORI MAY HAVE LOOKED INTO THIS. >> LORI MCILWAIN: THERE IS NO RESEARCH ON THAT AND THAT SILENT NUMBER 1 QUESTION WE GET. WHY DO THEY GO TO WATER? BASED ON THE CASES THAT WE SEE, THEY ARE TRYING TO GO TO A QUIET >> DIANE: COULD ARGUE A CAVE OR SOMETHING ELSE WOULD BE QUIET. >> LORI MCILWAIN: WE HAD CASES WHERE TWO WENT TO THE LIBRARY OUTSIDE OF THE LIBRARY. AND THAT SOUNDS LIKE A VERY SAFE CASE. IT WASN'T. THEY WERE MISSING FOR SEVERAL DAYS. CEMETERIES. NURSERIES. GARDEN NURSERIES. TWO CASES FOR THAT. SO THEY ARE GOING TO QUIET PLACES. I THINK WITH OUR YOUNGER KIDS, AGAIN, THOSE CASES TEND TO SKEW YOUNGER THE DROWNING CASES. THEY GO STRAIGHT TO WATER TO FIND THAT COMFORT A LOT OF TIMES AND FOR A LOT OF THEM, THAT'S THEIR SPECIAL TOPIC TOO, IS WATER. >> JOSHUA GORDON: SAMANTHA. >> SAMANTHA: PLEASE USE THE MICROPHONE. I WAS GOING TO ASK ABOUT THE SUICIDE SURVEY. WHAT I DON'T UNDERSTAND IS, WHEN WE HAVE SUICIDALITY SURVEYS OF THE GENERAL POPULATION, THERE IS A ROBUST EFFORT TO SCREEN THE GENERAL POPULATION FOR SUICIDALITY. WE HAVE THAT DATEDDA UP ON THE NIMH WEBSITE. THE CDC TRACKS IT. IS THERE ANG EXTRA HURDLE PREVENTING US FROM TRACKING THIS IN THE AUTISTIC POPULATION ON ONE OF THE THINGS THAT I'M CONCERNED ABOUT IS I'VE HEARD FROM SOME RESEARCHERS WHO ARE TELLING ME THAT WHEN THEY GET OR LOOK FOR IRB APPROVAL, THEY ARE BEING TOLD BY THE IRB THAT AUTISTIC ADULTS CAN'T CONSENT DO THIS KIND OF STUDY EVEN THOUGH NON-AUTISTIC ADULTS CAN. THAT IS ALARMING. IT INTERFERES WITH OUR ABILITY TO DO RESEARCH AND I'M WONDERING IF THAT IS ONE OF THE REASONS OR IF THERE IS SOME OTHER REASON WHY IT IS EXTRA HARD TO SURVEY AUTISTIC PEOPLE FOR SUICIDALITY? >> DR. LIPKIN: ONE, I THINK IN TERMS OF WHY THIS -- THE GENERAL POPULATION BUT NOT IN AUTISM. I THINK THERE IS SAY LACK OF AWARENESS ON THIS ISSUE JUST LIKE THERE WAS WITH WANDERING AND ELOPEMENT. SO WHAT WE ARE HOPING TO DO IS BRING FURTHER AWARENESS TO THIS. ARE THERE PROBLEMS? RESEARCHERS AND ADULTS? I WOULD MAINTAIN THAT THERE MIGHT BE SOME OBSTACLES BUT THEY ARE READILY CROSSED. I THINK THE OBSTACLES AT THIS POINT HAVE TO DO WITH LIMITATIONS -- LIMITED FUNDING FOR SUCH RESEARCH AND THE LIMITED NUMBER OF RESEARCHERS IN THE FIELD. SO I THINK IF WE ARE BRINGING GREATER AWARENESS TO IT, AND PERHAPS SUPPORT AROUND DOING SUCH RESEARCH, WE CAN GET THERE. >> JOSHUA GORDON: I WOULD POINT OUT THE CDC TRACKING OF SUICIDE IN THE GENERAL POPULATION IS MADE OFF DEATH CERTIFICATES WHICH OBVIOUSLY FOR MANY REASONS WOULDN'T NORMALLY HAVE A DIAGNOSIS OF AUTISM ON THERE. SO THE CO-MORBIDITY OF AUTISM IS NOT GOING TO COME EASILY FROM THAT. >> SAMANTHA. I THOUGHT THERE WAS TRACKING OF ATTEMPTED AS WELL. >> JOSHUA GORDON: THAT, I'M NOT SURE ABOUT. >> SAMANTHA: I MIGHT BE WRONG. >> JOSHUA GORDON: YOU MIGHT BE RIGHT. EVEN THEN IT WILL COME FROM EMERGENCY REPORTS ET CETERA AND NOT FROM IN-DEPTH SURVEYS TO REVEAL DIAGNOSIS LIKE AUTISM. JOHN I BELIEVE YOU HAD YOUR HAND RAISED. STILL A QUESTION OR COMMENT? WE ARE GOING TO GO AHEAD AND TAKE A BREAK AS SCHEDULED AND WE'LL RESUME HERE AT 11:00. WE ARE GOING TO RESUME THE MEETING WITH COMMITTEE BUSINESS. I'M GOING TO TURN IT OVER TO SUSAN DANIELS. >> DR. DANIELS: GREAT, THANK YOU. I HAVE SOME UPDATES TO SHARE WITH YOU AND THEN WE WILL DIVE RIGHT INTO BUSINESS. SO JUST ACKNOWLEDGING THE OARC STAFF IN THE WORK THEY HAVE DONE. FIRST UP IS WE WANTED TO INTRODUCE THE NEW OARC NEWSLETTER. I THINK MOST MEMBERS OF THE COMMITTEE SHOULD HAVE RECEIVED THIS IF YOU'RE ON OUR MAILING LIST. BUT, THIS IS SAY NEW EFFORT FROM THE OFFICE TO TRY TO KEEP PEOPLE INFORMED OF THE WORK OF THE IACC AND PARTNER ORGANIZATIONS FOR US TO BE ABLE TO SHARE UPDATES ON NEWS, NEW PUBLICATIONS, AND WE HOPE IN THE FUTURE, WE WILL BE DOING SOME EXCLUSIVE NEW FEATURES SUCH AS VIDEOS AND INTERVIEWS WITH PEOPLE FROM THE COMMUNITY. WE ARE TRYING TO KEEP IT BRIEF BUT HOPEFULLY FILLED WITH INFORMATION THAT IS USEFUL AND INTERESTING TO THE COMMUNITY AND WE WELCOME YOUR FEEDBACK. SO, HOPE THAT YOU ENJOY THE NEWSLETTER AND LET US KNOW IF YOU HAVE ANY SUGGESTIONS OR IF YOU WANT TO HAVE SOMETHING THAT YOU'RE DOING BE FEATURED IN IT. NEXT, JUST WANTED TO SHARE WITH YOU THAT WE HAVE AN UPCOMING EVENT IN THE FALL. WE ARE GOING TO HAVE A SEMINAR ON AUTISM IN GIRLS AND WOMEN. AND THIS IS GOING TO BE A JOINT SEMINAR SPONSORED BY OUR OFFICE, THE OA ARE RC AND NIMH OFFICE ON RESEARCH ON DISPARITIES AND GLOBAL AND MENTAL HEALTH. THE TENTATIVE DATE IS SEPTEMBER 19 AND IT WILL BE IN THE NIMH NEUROSCIENCE CENTER IN ROCKVILLE. THE PANEL FOR THE SEMINAR WILL BE DR. KEVIN PAL FREE, A MEMBER OF OUR COMMITTEE, DR. PAM VIN TOLLA FROM YALE AND Ms. ZOEY GROWS FROM THE AUTISTIC SELF ADVOCACY NETWORK TALKING ABOUT DIFFERENT ASPECTS OF THIS ISSUE. IT SHOULD BE INTERESTING. WE ARE GOING TO HAVE IT AS A LIVE SEMINAR WHERE PEOPLE CAN COME IN AND SEE US AS WELL AS ON THE WEBCAST. SO, BE LOOKING OUT FOR THAT. WE'LL FEATURE IT IN OUR E-MAIL UPDATES IN THE FUTURE. AND IT WILL BE ON THE WEBSITE. NEXT, I HAVE -- THIS IS COMMITTEE BUSINESS. I WANTED TO GIVE YOU AN UPDATE ON WHAT IS HAPPENING WITH PORTFOLIO ANALYSIS UNTIL OUR OFFICE. SO OUR OFFICE IS IN THE PROCESS OF PREPARING THE 2014 AND 15AS IS D RESEARCH PORTFOLIO ANALYSIS REPORT. I ALREADY HAVE BEEN SHARING THE DATA FROM THE REPORT BUT WE ARE GOING TO HAVE THE FINAL REPORT IN YOUR HANDS AT THE OCTOBER MEETING. AND WE ARE IN THE PROCESS OF PREPARING THE DATA CALL FOR THE 2016 DATASET IS WHICH WILL USE THE NEW OBJECTIVES FROM THIS NEW STRATEGIC PLAN. AND I HAVE A REQUEST FOR YOU. I WOULD LIKE TO HAVE 3-4 IACC MEMBERS WILLING TO SERVE AS VOLUNTEERS AS CONSULTANTS FOR OUR TEAM IN TERMS OF ISSUES THAT WE MAY HAVE TRYING TO DETERMINE IF WE SHOULD BE ADDING NEW FUNDERS TO THE PORTFOLIO ANALYSIS OR IF WE HAVE ANY OTHER QUESTIONS WE ARE TRYING TO SET DEFINITIONS OR ANYTHING LIKE THAT. WE WANTED TO HAVE A LITTLE BIT OF HELP FROM MEMBERS OF THE COMMITTEE. SO GIVE THAT THOUGHT IF YOU'RE WILLING TO BE A VOLUNTEER. IT WOULDN'T BE TAKING UP TOO MUCH OF YOUR TIME BUT IT WOULD BE GOOD TO HAVE SOME PEOPLE WHO ARE WILLING TO GIVE US SOME ADVICE IN THOSE AREAS. SO THEN WE'LL MOVE INTO THE STRATEGIC PLAN. SO, THIS IS THE STRATEGIC PLAN THAT THE NEW PLAN IS COVERING BOTH SERVICES AND RESEARCH ISSUES AND MEDIA GROUPS WORKING OVER THE LAST SEVERAL MONTHS TO PREPARE THE DRAFTS YOU SAW THEM IN AND WILL NOW THEY HAVE BEEN EDITED. SO THIS IS A LIST OF STEPS WE HAVE GONE THROUGH. THAT THE POINT, THE OARC STAFF EDITED THE 7 CHAPTERS AND PREPARED THE SECTIONS OF THE STRATEGIC PLAN. WE WILL WANT TO HEAR YOUR COMMENTS AND THOUGHTS ABOUT ANYTHING ELSE THAT MIGHT HAVE BEEN OMITTED OR NEEDS CORRECTION BEFORE WE WOULD BE ABLE TO APPROVE. THERE ARE 13 SECTIONS TO THE NEW STRATEGIC PLAN INCLUDING AN INTRODUCTION, STATEMENT ON THE VISION MISSION AND CORE VALUES, AND OVERVIEW OF ASD RESEARCH FUNDING PROGRESS THAT IS BASED ON THE PORTFOLIO ANALYSIS OF THE OARC FOR THE IACC AND THEN CHAPTERS FOR QUESTIONS ONE-7 TALKING ABOUT THE DIFFERENT AREAS THAT THE STRATEGIC PLAN COVERS. A SECTION ON DUPLICATION OF EFFORT WHICH WAS APPROVED BACK IN JANUARY BUT WE HAVE PROVIDED IT HERE AGAIN FOR YOUR CONSIDERATION. AND IT IS REQUIRED AS A PART OF THE AUTISM CARES ACT TO BE A PART OF THE STRATEGIC PLAN AND A BUDGET RECOMMENDATION. SO THIS -- THERE WAS A WORKING GROUP THAT LOOKED AT THE BUDGET RECOMMENDATION AND WE WILL BE PRESENTING THAT INFORMATION TO YOU HERE SO YOU CAN AS A COMMITTEE, MAKE A DECISION ABOUT HOW YOU WOULD LIKE TO DO THAT BUDGET RECOMMENDATION AND THEN THE CONCLUSION SECTION. SO, WE ARE GOING TO TRY TO GO THROUGH ALL OF THESE. I KNOW YOU HAVE THE DOCUMENTS IN FRONT OF YOU AND HOPEFULLY MANY OF YOU HAD AT LEAST A CHANCE TO SKIM THROUGH, IF NOT FULLY READ THE CHAPTERS YOU HAVE RECEIVED AND WE'LL TAKE YOUR COMMENTS. SO I'M GOING START WITH THE INTRODUCTION AND ASK IF ANYONE HAS ANY COMMENTS ABOUT ANYTHING THAT YOU THINK NEEDS TO BE ADDED T IT OR ANY OTHER TYPES OF COMMENTS. LEWIS? >> LEWIS: I WANTED TO SAY I READ THE INTRODUCTION AND I THOUGHT IT WAS QUITE GOOD. >> DR. DANIELS: JOHN? >> JOHN: -- >> DR. DANIELS: AND I SHOULD ACKNOWLEDGE JOHN DID THE FIRST DRAFTED AND THE OARC PUT TOGETHER A COLLABORATIVE EFFORT ON THE INTRODUCTION. >> JOHN: I WAS GOING TO SAY, I THINK THAT YOU DID A REALLY GOOD JOB OF WEAVING A LOT OF THE MAYBE DISJOINTED IDEAS THAT I SENT YOU FOLKS INTO A COHERENT HOLE HERE AND MY COMMENTS ON IT REALLY ARE JUST LIMITED TO DETAILS OF IT. I'LL E-MAIL YOU. I'M PRETTY HAPPY WITH WHAT YOU ALL ACHIEVED. >> DR. DANIELS: THANK YOU AND YOU'RE WELCOME TO SEND SMALLETITS AND THOSE KINDS OF THINGS AFTER THE MEETING. WE WOULD LIKE TO RECEIVE EVERYTHING BY AUGUST FOURTH -- SMALL EDITED. >> JOHN: I DON'T THINK I HAVE ANYTHING THAT NEEDS TO BE DISCUSSED. JUST LITTLE STUFF. >> DR. DANIELS: IT LOOKS LIKE THERE ARE NO MORE COMMENTS ON THE INTRODUCTION. SO THEN LET'S MOVE FORWARD TO THE VISION, COMMISSION CORE VALUE STATEMENT. SO, THE OARC WENT BACK THROUGH THE PREVIOUS VISION MISSION AND CORE VALUE STATEMENT AND WE TOOK COMMENTS THE LAST TIME AND TRIED TO INCORPORATE THEM. SO THE VISION STATEMENT AND THE MISSION STATEMENT ARE THIS SLIDE. DOES ANYONE HAVE ANY COMMENTS ON IT? WE TRIED TO INCORPORATE A COUPLE OF IDEAS THAT CAME THROUGH IN THE NEW PLAN TO GIVE IT A LITTLE BIT OF A REFRESH. BUT IS THERE ANYTHING THERE THAT NEEDS TO BE UPDATED? DIANA? >> DIANA: THE USE OF THE TERM, CONSUMER, IS THAT REQUIRED? BECAUSE -- I JUST THOUGHT TO ME THAT SOUNDS ODD. >> CONSUMER, YOU EITHER ARE A PERSON WITH AUTISM OR YOU'RE A PART OF THE COMMUNITY. >> DR. DANIELS: WE COULD CHANGE THAT WORDING. THAT'S FROM THE ORIGINAL GROUP. THEY ALWAYS TALKED ABOUT CONSUMER-BASED QUESTIONS. WE COULD ABSOLUTELY CHANGE IT IF THE COMMITTEE LIKES THAT, WE COULD CHANGE THAT. I THINK THEY DIDN'T WANT TO USE THE WORD, PATIENT, BECAUSE THEY DIDN'T WANT -- NOT EVERYONE WITH AUTISM OR A FAMILY MEMBER WOULD CONSIDER THEMSELVES A PATIENT. BUT COMMUNITY MEMBER OR COMMUNITY FOCUS WOULD BE FINE. WHAT DO OTHER PEOPLE THINK ABOUT THAT? >> I DON'T WANT TO SAY COMMUNITY IN A WAY THAT OMITS THE REQUIREMENT THAT WE FOCUS ON THE ACTUAL AUTISTIC INDIVIDUAL AS WELL. BECAUSE THAT HAPPENS IN THE AUTISTIC COMMUNITY. I THOUGHT I HAD ALREADY PRESSED IT. THERE IS AUTISTIC INDIVIDUALS AND THERE IS OUR FAMILY MEMBERS. I THINK BOTH ARE IMPORTANT BUT I THINK WE NEED TO CALL OUT BOTH SPECIFICALLY. >> HOW ABOUT INDIVIDUAL AND FAMILY MEMBER FOCUS. IT'S JUST CONSUMER MEANS TO ME MEANS YOU'RE BUYING SOMETHING. >> IT'S A VERY COMMON WORD USED IN THE MENTAL HEALTH COMMUNITY. SO THAT IS PROBABLY WHERE IT CAME FROM. >> DR. DANIELS: I THINK THEY WERE AT THE TIME THINKING ABOUT MAKING SURE THAT THE PLAN IS GOING TO HELP BRING VALUE TO PEOPLE AND I THINK MAYBE THAT'S WHERE THEY CAME UP WITH THE WRD, CONSUMER. BUT I THINK INDIVIDUAL AND FAMILY MEMBER WOULD BE FINE. IS THAT AGREEABLE TO PEOPLE AT THE TABLE? >> JOSHUA GORDON: PLEASE SPEAK UP IF IT'S NOT. THERE IS SAY REASON THE WORD WAS THERE. SO I DON'T WANT TO EXCLUDE ANY CONTRARY OPINIONS. JOHN? >> JOHN: A COUPLE OF SMALL POINTS ON THIS. IN THE SPIRIT EVER COLLABORATION, I THINK BECAUSE IT HAS BEEN A KIND OF A SORE POINT WITH AUTISTIC PEOPLE, I THINK WE SHOULD SPECIFY THAT WE WILL TREAT AUTISTIC PEOPLE, WE WILL LISTEN TO AUTISTIC VIEWS. I DO THINK THAT YOU'RE RIGHT IN WHAT YOU HAVE WRITTEN WE WANT TO LISTEN TO DIVERSE VIEWS FROM ALL PEOPLE. BUT SOMEHOW I THINK WE SHOULD WEAVE IN THERE, SPECIFICALLY AUTISTIC VIEWS WITHOUT ELIMINATING THE OTHERS. AND I THINK THAT ANOTHER SMALL CHANGE THAT I WOULD SUGGEST IS THAT IN THE SENSE OF URGENCY, THIS OF COURSE IS WHAT I HAVE PUSHED FOR ALL ALONG. WE WILL FOCUS ON WHAT STEPS WE CAN TAKE TO RAPIDLY AND EFFICIENTLY ADDRESS THE NEEDS OF PEOPLE LIVING WITH ASD. BUT, LEWIS HAS ALWAYS THOUGHTFULLY REMINDED ME OF THE NEED TO NOT LOSE SIGHT OF THE LONG TERM GAIN. THAT WE STILL NEED BASIC SCIENTIFIC RESEARCH. AND I THINK THAT DESERVES A SENTENCE AND URGENCY TOO, EVEN THOUGH I THANK YOU FOR PUTTING OUR COMMUNITY NEEDS FIRST. AND THEN ON -- MY COMPUTER JUST WEPT OFF. BUT IN THE ETHICS OR EQUITY PORTION, I JUST WOULD SAY THAT YOU HAD QUALITY OF LIFE AS YOU HAD -- AND HUMAN RIGHTS AND SO FORTH ANDILED JUST PUT QUALITIESY OF LIFE AS THE FIRST THING NOT THE THIRDED. >> JOSHUA GORDON: SO I WANT TO MAKE SURE WE GET ALL THOSE THINGS BUT ALSO WANT TO MAKE SURE WE COME BACK TO THE CONSUMER FOCUS. THE IDEA IS WE WANT TO HAVE THE LANGUAGE APPROVED BY THIS COMMITTEE. ESPECIALLY FOR THIS THAT WE GET THESE DETAILS RIGHT. SO THERE WAS A PROPOSAL TO CHANGE CONSUMER TO COMMUNITY. AND THEN IF YOU WILL, A COUNTER PROPOSAL TO CHANGE CONSUMER TO INDIVIDUAL AND FAMILY FOCUS. SO, LET'S DO THAT FIRST AND THEN WE'LL GO DOWN TO THE OTHER ISSUES THAT JOHN RAISED. ANY THOUGHTS ABOUT THOSE TWO POSSIBLE SUBSTITUTIONS FOR THE WORD, CONSUMER? LINDA. >> LINDA: I DON'T THINK WE WANT TO LOSE THE WORD, COMMUNITY. >> JOSHUA GORDON: OKAY. >> LINDA: I WOULD THINK WE MIGHT WANT TO SAY INDIVIDUAL FAMILY AND COMMUNITIES. >> JOSHUA GORDON: SAMANTHA I BELIEVE YOU BROUGHT UP YOU WANTED TO MAINTAIN THE FOCUS ON THE INDIVIDUAL. IS IT ENOUGH IF IT WOULD SAY COMMUNITY FOCUS, THAT THE REST OF THAT DESCRIPTION SAYS WE WILL FOCUS AND MAKE DIFFERENCE IN THE LIVES OF PEOPLE EFFECTED BY AS IS D. OR DO YOU NEED IT IN THE -- OR WOULD YOU -- SORRY, LET'S GET IT UP THERE. >> JOSHUA GORDON: CONSUMER FOCUS. SO COMMUNITY FOCUS. WE WILL FOCUS ON MAKING A DIFFERENCE IN THE LIVES OF PEOPLE AFFECTED BY AS IS D. >> SAMANTHA: WHICH PARAGRAPH? >> JOSHUA GORDON: IT'S THE TOP PARAGRAPH. >> DR. DANIELS: IT'S THE TITLE FOR THAT. >> SAMANTHA: I THINK THAT IS FINE. >> JOSHUA GORDON: ARE THERE ANY OBJECTIONS TO THAT? OKAY. SO, WE'LL HAVE COMMUNITY FOCUS. AND LATER ON, WE'LL HAVE A FORMAL MOTION TO APPROVE THE WHOLE DOCUMENT SO THAT IS WHY I WANT TO MAKE SURE WE GET THE WORDS RIGHT FOR THIS PART, ESPECIALLY. THE SECOND PART OF THAT SUSAN, THE SPIRIT OF COLLABORATION. WHAT WAS JOHN'S POINT THERE? >> DR. DANIELS: INCORPORATING SOMETHING ABOUT THE IMPORTANCE OF LISTENING TO THE VIEWS OF AUTISTIC PEOPLE. >> JOSHUA GORDON: DOES ANYBODY HAVE PROPOSED WARDING FOR THAT -- WORDING FOR THAT? SO THIS IS THE FINAL PARAGRAPH THERE, SPIRIT OF COLLABORATION. >> HOW ABOUT IF WE HAVE IT, WE WILL TREAT INDIVIDUALS WITH AUTISM AND OTHERS WITH RESPECT, LISTEN TO DIVERSE VIEWS WITH OPEN MINDS. >> JOSHUA GORDON: DOES THAT WORK, JOHN? >> DR. DANIELS: I THINK WHEN JOHN SPOKE ABOUT -- YOU WERE TALKING ABOUT LISTENING TO THE VIEWS FROM PEOPLE WITH AUTISM. SO YOU COULD SAY LISTEN TO VIEWS FROM PEOPLE WITH -- ON THE AUTISM SPECTRUM AS WELL AS -- SOMETHING ALONG THOSE LINES. >> JOSHUA GORDON: SO THE THIRD CLAUSE, THOUGHTFULLY CONSIDER PUBLIC INPUT COVERS EVERYONE ELSE. SO IF WE HAD LISTEN TO VIEWS OF INDIVIDUALS WITH AUTISM WITH OPEN MINDS AND THOUGHTFULLY CONSIDER PUBLIC INPUT, IS THAT INCLUSIVE ENOUGH? >> DR. DANIELS: OR WOULD YOU NEED TO ADD FAMILY MEMBERS AS WELL? [ OFF MICROPHONE ] >> JOSHUA GORDON: PLEASE USE THE MIC. >> JOHN: INDIVIDUALS WITH AUTISM AND THEIR FAMILIES. THE THAT'S FAIR. >> JOSHUA GORDON: LISTEN TO INDIVIDUALS WITH AUTISM AND THEIR FAMILIES WITH OPEN MINDS, THOUGHTFULLY CONSIDER PUBLIC INPUT -- THAT GETS EVERYBODY ELSE. OKAY. ANY OBJECTIONS TO THAT LANGUAGE? ON THE PHONE, I WANT TO MAKE SURE YOU HAVE THE OPPORTUNITY. THE NEXT ISSUE. >> DR. DANIELS: SO IN THE SENSE OF URGENCY HE ADDED SOMETHING ABOUT THE SCIENCE TO THE URGENCY. ALTHOUGH IN THE EXCELLENCE SECTION, WE DO HAVE SOME WORDING ABOUT ENSURING THAT WE PURSUE SCIENTIFIC RESEARCH WITH THE HIGHEST QUALITY. >> JOHN: MAYBE TO ADDRESS THAT, WE COULD JUST SAY, WE WILL FOCUS ON RESPONDING RAPIDLY AND EFFICIENTLY TO THE NEEDS AND CHALLENGES OF THE COMMUNITY. JUST SHORTEN THAT FIRST SENTENCE AND THEN IF WE MOVE RIGHT INTO EXCELLENCE, MAYBE THEN WE COVER THE LONG TERM GAIN IN THE EXCELLENCE PARAGRAPH. >> JOSHUA GORDON: THE PROPOSAL IS WE WILL FOCUS -- THE TOP PARAGRAPH ON THE SLIDE. SENSE OF URGENCY. WE WILL FOCUS ON RESPONDING RAPIDLY AND EFFICIENTLY TO THE NEEDS AND CHALLENGES OF THE COMMUNITY AFFECTED BY ASD. >> JOHN: NEEDS AND CHALLENGES OF AUTISTIC INDIVIDUALS AND THEIR FAMILIES. >> JOSHUA GORDON: THAT'S GOOD. >> JOHN: WE WILL FOCUS ON RESPONDING RAPIDLY AND EFFICIENTLY TO THE NEEDS AND CHALLENGES OF AUTISTIC INDIVIDUALS AND THEIR FAMILIES. >> JOSHUA GORDON: OKAY. SO I DON'T HAVE AN OBJECTION TO THAT BUT I WANT TO MAKE SURE WE RECOGNIZE THAT WE ARE CHANGING THE LANGUAGE TO THE AUTISTIC INDIVIDUALS INSTEAD OF INDIVIDUALS WITH ASD. AND I WANT TO MAKE IS THAT YOUR NO ONE THINKS THAT EXCLUDES ANYONE. >> JOHN: I JUST HATE THE IDEA OF BEING DISORDERED, JOSH. I JUST DON'T LIKE IT. >> JOSHUA GORDON: I RESPECT THAT. I JUST WANT TO MAKE SURE THAT THERE ARE NOT CONTRARY OPINIONS IN THE GROUP. >> DR. DANIELS: COMMONLY IN THE STRATEGIC PLAN WE REFER TO PEOPLE AS PEOPLE ON THE AUTIST SPECTRUM AND THAT HAS BEEN KIND OF THE FAIRLY ACCEPTABLE TERM. SO WE COULD USES THAT UNLESS YOU PREFER AUTISTIC INDIVIDUALS. >> JOSHUA GORDON: THEN IT WOULD BE -- CHALLENGES OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES. >> JOHN: IT'S OKAY BY ME. WHAT DO YOU THINK, SAM? >> JOSHUA GORDON: PLEASE USE THE MIC. >> SAM: PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES IS FINE. >> JOSHUA GORDON: I'M GOING TO REPEAT THE TOP PARAGRAPH. SENSE OF URGENCY. WE WILL FOCUS ON RESPONDING RAPIDLY AND EFFICIENTLY TO THE NEEDS AND CHALLENGES OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES. AND THEN THAT ALLOWS MORE QUICK AND READY ACCESS TO THE NEXT PARAGRAPH THAT POINTS TO SCIENCE. ANY OBJECTIONS TO THAT LANGUAGE? WERE THERE OTHER ISSUES THAT JOHN RAISED? >> DR. DANIELS: NO. >> JOSHUA GORDON: ANY ISSUES WITH REGARD TO THE CORE VALUES AND MISSION?&-œp>> COUL D YOU READBACKTHE SPIRIT OF COLLABORATION ONE MORE TIME? TREAT OTHERS WITH RESPECT, LISTEN -- [ OFF MICROPHONE ] >> JOSHUA GORDON: I BELIEVE IT WAS JUST LISTEN TO THE VIEWS. SO DO WE HAVE IT? I WANT TO MAKE SURE WE GET IT RIGHT IN WRITING. >> DR. DANIELS: SO LISTEN TO THE VIEWS OF INDIVIDUALS ON THE AUTISM SPECTRUM AND THEIR FAMILIES WITH OPEN MINDS, THOUGHTFULLY CONSIDER PUBLIC INPUT AND FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COMFORTABLY OFFER OPPOSING OPINIONS. >> [ OFF MICROPHONE ] >> JOSHUA GORDON: GOOD. WE CAN DO THAT. >> DR. DANIELS: SO WOULD YOU PREFER TO STAY WITH DIVERSE VIEWS, OR THE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES? [ OFF MICROPHONE ] >> JOSHUA GORDON: REPEAT THAT BECAUSE THE MIC WASN'T ON. SPIRIT OF COLLABORATION, WE WILL TREAT OTHERS WITH RESPECT AND LISTEN TO DIVERSE VIEWS -- LISTEN TO -- I THINK WE NEED DIVERSE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES WITH OPEN MINDS. ACTUALLY WE SHOULD MOVE THAT, WITH OPEN MINDS TO LISTEN WITH OPEN MINDS, TO THE DIVERSE VIEWS OF -- OTHERWISE WE ARE NOW SEPARATING OUT. THERE IS SOME GRAMMATICAL THING THING WRONG THERE. I'M GOING TO REPEAT IT. SPIRIT OF COLLABORATION. WE WILL TREAT OTHERS WITH RESPECT, LIFT WIN OPEN MINDS TO THE SOLID DIVERSE VIEWS OF PEOPLE WITH THE AUTISM SPECTRUM AND WILL THEIR FAMILIES, THOUGHTFULLY CONSIDER PUBLIC IN AND THE FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COME AND COMFORTABLY OFFER OPPOSING OPINIONS. GO AHEAD. >> I JUST HAVE A QUESTION ABOUT THAT BECAUSE ONE OF THE THINGS THAT WE DO HERE IS WE LISTEN TO FOLKS WHO ARE DOING RESEARCH, AND STUFF LIKE THAT. SO, IT STRIKES ME THAT IF WE ON THE ONE HAND WE ARE SAYING INDIVIDUALS WITH AUTISM AND THEIR FAMILIES AND ALL THAT BUT ON THE OTHER, BY DOING THAT, IT TAKES OUT THAT ACADEMIC PIECE THAT WE ALSO DO. AND I FEEL LIKE JUST SAYING DIVERSE VIEWS IS SORT OF ALL ENCOMPASSING AND MAYBE DOESN'T MEET PEOPLE -- I DON'T KNOW. >> JOSHUA GORDON: THE FEELING WAS WE WANTED TO ENSURE THAT THIS PARAGRAPH INCLUDED SPECIFICALLY LISTENING TO INDIVIDUALS WITH AUTISM AND THEIR FAMILIES. AND THAT THE PUBLIC INPUT WOULD ENCOMPASS ALL OTHER INPUT. BUT YOU'RE SUGGESTING THAT PERHAPS WE MIGHT NEED TO REMIND THIS IN PULT WOULD INCLUDE FROM SCIENTISTS OR OTHERS AS WELL THAT MIGHT NOT BE COVERED BY PUBLIC INPUT? >> I GUESS IT'S MORE JUST -- I FEEL LIKE THE SENTENCE GETS REALLY CLUNKY WITH ADDING ALL THAT EXTRA VERBIAGE AND I DON'T KNOW THAT IT IS NECESSARY IF THE PHRASE, DIVERSE VIEWS IS ENCOMPASSING ENOUGH. BUT I GET IT. IF THE FOLKS WHO ARE ON THE SPECTRUM FEEL LIKE IT IS NOT ENCOMPASSING ENOUGH, THEN THAT IS PROBLEM MALTIC. IT FEELS CLUNKY. >> DR. DANIELS: SO I HAVE A PROPOSAL. WE COULD SEE WE WILL TREAT LITTLER WITH RESPECT, LISTEN TO DIVERSE VIEWS WITH OPEN MINDS, THOUGHTFULLY CONSIDERING SOMETHING ABOUT LIKE THE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES AND THE GENERAL COMMUNITY -- OR SOMETHING THAT COMBINES ALL THREE AND FOSTER DISCUSSION. SO WE WOULD PUT ALL OF THOSE IN ANOTHER CLAUSE BUT LEAVE DIVERSE VIEWS THAT WOULD KIND OF CAPTURE EVERYTHING. AND THEY WE ARE GOING TO THOUGHTFULLY CONSIDER THE VIEWS OF ALL OF THESE PARTICULAR PEOPLE. >> JOSHUA GORDON: THOUGHTS FROM -- NOW I CAN'T REMEMBER IF IT WAS JOHN OR SAMANTHA WHO SUGGESTED THE ORIGINAL INSERTION. IT CAN BE CHALLENGING TO DO THIS WITHOUT IT WRITTEN UP ON THE BOARD. DO WE HAVE SOMETHING WE CAN WRITE ON OR CAN WE CHANGE THE LANGUAGE ON THE SLIDE? >> DR. DANIELS: THE SLIDES ARE PDFs, THEY CAN'T BE CHANGED. >> JOSHUA GORDON: SO LET ME TRY TO REPEAT IT. AND SAMANTHA, JOHN, LET ME KNOW IF YOU'RE HAVING TROUBLE FOLLOWING. SPIRIT OF COLLABORATION. WE WILL TREAT OTHERS WITH RESPECT, LISTEN TO DIVERSE VIEWS WITH OPEN MINDS, THOUGHTFULLY CONSIDER INPUT FROM PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES AS WELL AS THE GENERAL COMMUNITY, AND FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COMFORTABLY OFFER OPPOSING OPINIONS. I THINK WHAT YOU LOSE IN THERE IS THE NOTION THAT YOU'RE TRYING TO INCLUDE DIVERSE VIEWS AND PERSPECTIVES OF THE INDIVIDUALS WITH AUTISM AND WHAT THEY BRING TO THE TABLE. SO, I THINK THAT IS WHAT THE COMMENTS WERE BEFORE. I MEAN, AS A SCIENTIST, I'M HAPPY TO BE CONSIDERED PART OF THE PUBLIC, BUT I DON'T MEAN TO PUSH THE ISSUE THAT WAY. >> I UNDERSTAND THAT POINT AND THAT OBVIOUSLY WE NEED TO CONSIDER A DIVERSE RANGE OF VIEWS FROM FOLKS ON THE SPECTRUM, THAT IS A DIVERSE POPULATION. IT JUST PROBABLY NEEDS WORD SMITHING THAT I DON'T KNOW THAT WE WOULD BE ABLE TO -- [ LOW AUDIO ] >> JOSHUA GORDON: GO AHEAD, JOHN. >> JOHN: SO IS WHAT WE SETTLED ON THEN, WE WILL FOCUS ON RESPONDING RAPIDLY AND EFFICIENTLY TO THE NEEDS AND CHALLENGES OF INDIVIDUALS ON THE AUTISM SPECTRUM AND THEIR FAMILIES. I JUST LOST MY KEYBOARD FOR A MINUTE AND I GOT IT BACK. >> JOSHUA GORDON: YES. YES. THAT IS CORRECT. >> JOHN: IS THAT WHAT WE AGREE UPON THEN? >> JOSHUA GORDON: YES FOR THE SENSE OF URGENCY, I THINK THAT WAS FINE. >> I DON'T WANT TO FORGET COMMUNITY. AUTISM AND MEMBERS ON THE -- >> JOSHUA GORDON: COMMUNITY IS ANOTHER ASPECT OF THE MISSION, THE NEXT SLIDE HAS. >> BUT COMMUNITY IS IMPORTANT ALL THE TIME. I MEAN, COMMUNITY IS AN INCLUSIVE WORD. IT INCLUDES INDIVIDUALS, IT INCLUDES FAMILIES. >> WE MENTION INDIVIDUALS. WE ARE SAYING INDIVIDUALS AND FAMILIES IN THERE. >> BUT WE ARE NOT SAYING COMMUNITY. >> JOHN: AUTISTIC INDIVIDUALS AND FAMILIES ARE IT. >> I GUESS JOHN, I MIGHT SAY THAT WE HAVE COMMUNITIES OF PEOPLE WHO ARE IMPORTANT TO BE INVOLVED, TO CARE, AS WELL AS THE AUTISTIC INDIVIDUALS AND THEIR FAMILIES. >> [ OFF MICROPHONE ] >> WE ARE NEVER GOING TO BE WHERE WE WANT TO BE IF YOU DON'T INVOLVE THE COMMUNITY. >> JOHN: I THINK THE COMMUNITY IS AN INHERENT PART OF THIS -- [ OFF MICROPHONE ] MARGINALIZED ALL OUR LIVES IS THE AUTISTIC PEOPLE. >> JOSHUA GORDON: I THINK THAT THE COMMUNITY IS INCLUDED AND MAYBE WE HAVE TO MAKE SURE IS IT IS IN THE SPIRIT OF COLLABORATION AND IF YOU WOULD MOVE TO THE NEXT SLIDE. NOW THE FOCUS IS NOW ACTUALLY COMMUNITY FOCUS. SO, I THINK THAT WE HANDLED THAT WELL ENOUGH. THAT IS COVERED. LET'S MOVE BACK TO THIS ISSUE THAT WE STILL HAVE NOT RESOLVED WHICH IS THE SPIRIT OF COLLABORATION. BECAUSE IT MAY BE TRICKY BUT AGAIN THIS IS THE UPFRONT LANGUAGE AND I WOULD BE MUCH MORE COMFORTABLE HAVING THIS COMMITTEE APPROVE IT A FINAL VERSION TODAY THAN HAVING TO EDIT IT AND WE REALLY WANT TO GET THIS APPROACHED TODAY. SO, SPIRIT -- SPIRIT OF COLLABORATION. TREAT OTHERS WITH RESPECT, LISTEN TO THE DIVERSE VIEWS OF INDIVIDUALS -- SORRY, OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES, THOUGHTFULLY CONSIDER -- WHY DON'T WE SAY THOUGHTFULLY CONSIDER COMMUNITY IN PULT? AND I THINK IT WOULD INCLUDE THE SCIENTISTS BUT MAYBE NOT. COMMUNITY INPUT AND FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COMFORTABLY OFFER OPPOSING OPINIONS. I'M GOING TO REPEAT. THAT WE WILL TREAT OTHERS WITH RESPECT, LISTEN TO DIVERSE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES, THOUGHTFULLY CONSIDER COMMUNITY INPUT AND FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COMFORTABLY OFFER OPPOSING OPINIONS. I'LL REPEAT IT. SPIRIT OF COLLABORATION. WE WILL TREAT OTHERS WITH RESPECT, LISTEN TO THE DIVERSE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM AND THEIR FAMILIES, THOUGHTFULLY CONSIDER PUBLIC INPUT AND FOSTER DISCUSSIONS WHERE PARTICIPANTS CAN COMFORTABLY OFFER OPPOSING OPINIONS. JULIE? >> JULIE: IS IT HELPFUL? DO WE NEED TO HAVE, LISTENING TO AND THOUGHTFULLY CONSIDERING AS SEPARATE? CAN WE SIMPLIFY IT DOWN AND SAY THOUGHTFULLY CONSIDER DIVERSE VIEWS OF PEOPLE ON THE AUTISM SPECTRUM, THEIR FAMILIES AND THE COMMUNITY? DO WE LOSE SOMETHING WHEN WE DO THAT? >> JOSHUA GORDON: I THINK WE DO. >> OKAY. >> JOSHUA GORDON: BECAUSE AGAIN I'M COMING BACK TO THE POINT THAT WAS RAISED BY SORRY IT WAS SAMANTHA. IF NOT IT WAS JOHN. MAIN BOTH OF YOU RAISED IT. BUT THAT WE WANT TO INCLUDE THE NOTION THAT THERE ARE MULTIPLE PERSPECTIVES COMING FROM THE LIVED EXPERIENCE OF BEING ON THE SPECTRUM AND ALSO LIVED EXPERIENCE OF BEING FAMILY MEMBER. THAT IS SEPARATE AND DISTINCT FROM COMMUNITY INPUT. >> JOHN: I LIKE THE WAY YOU READ IT, JOSH. >> JOSHUA GORDON: WE'LL GO WITH THAT LANGUAGE. ANY OTHER COMMENTS ON THE ANY OF THE OTHER POINTS? OKAY. >> DR. DANIELS: NEXT WE ARE GOING TO MOVE TO THE SECTION WITH THE OVERVIEW OF AS IS D RESEARCH FUNDING PROGRESS. THIS WAS A SECTION PREPARED BY THE OARC BASED ON THE PORTFOLIO DATA DISCUSSED WITH THE COMMITTEE AND THE WORKING GROUPS. DO YOU HAVE ANY COMMENTS ON THIS SECTION? IT WAS BASICALLY A SUMMARY OF WHAT WE HAVE LEARNED FROM THE PORTFOLIO WHERE WE STILL SEE GAPS, WHERE SOME OF THE GAPS HAVE BEEN FILLED UNDER THE LAST STRATEGIC PLAN. DAVID? >> DAVID: FIRST, I DID TRY AND READ MOST OF THE SECTIONS AND I JUST WANT TO CONGRATULATE AND YOU THANK YOU AND OARC FOR DOING A GOOD JOB. I'LL SECOND JOHN'S NOTION. >> JOSHUA GORDON: I WANT TO MAKE SURE THE PUBLIC WILL HEAR THAT. IT'S ON BUT YOU'RE NOT SPEAKING INTO IT. >> DAVID: OKAY, OARC DID A GREAT JOB, VERY CLEARLY. THE ONLY -- SO I DID DO SOME MINOR EDIT AND INCORPORATE THOSE LATER. BUT I DID THINK AT THE END OF THIS SECTION, THERE NEEDS TO BE A POINT MADE THAT INCREASED FUNDING AND THE GAP AREAS SHOULDN'T COST REDUCING FUNDING THAT HAVE ALREADY MADE PROGRESS. THERE ARE VERY FEW QUESTIONS IN AUTISM WHERE WE KNOW ITS ANSWER. [ LOW AUDIO ] I DON'T HAVE THE EXACT TEXT BUT SOMETHING -- >> DR. DANIELS: I THINK WE DOCK THAT. AND WE DO HAVE THE BUDGET SECTION AS WELL WHERE WE COULD REITERATE THAT SAME POINT WHICH I'LL BE GOING OVER WITH YOU IN A LITTLE WHILE. ANY OTHER COMMENTS HERE BEFORE WE MOVE ON TO THE NEXT SECTION? SO, THEN -- >> JOSHUA GORDON: LET ME JUST ASK THE COMMITTEE IF THEY ARE COMFORTABLE WITH THE NOTION WE WOULD DRAFT LANGUAGE. I WANT TO BE SPECIFIC. WE'LL DRAFT A SENTENCE TO THAT EFFECT AND THAT WILL BE PART OF THE APPROVED DOCUMENT WE WILL VOTE ON LATER. ANY DISCOMFORT WITH THAT? >> DR. DANIELS: THAT WAS THE PLAN IF WE WERE GOING TO WORD SMITH THE WHOLE DOCUMENT. THEN WE WILL BE REMEETING IN OCTOBER TO TALK ABOUT THIS AGAIN. >> JOSHUA GORDON: THAT'S RIGHT. >> DR. DANIELS: SO HOPEFULLY ON THINGS LIKE THE MISSION AND VISION, THERE IS VERY SPECIFIC LANGUAGE BUT HOPEFULLY WE CAN TAKE SUGGESTIONS FROM YOU AND IF THERE ARE OMISSIONS OR GAPS HERE AND THERE THAT WE COULD FILL THEM IN AND BE ABLE TO STILL GENERALLY APPROVE THE DOCUMENT TODAY. SO, LET'S MOVE ON TO QUESTION 1 WHICH ON ON SCREENING AND DIAGNOSIS. THE NEW QUESTION IS HOW CAN I RECOGNIZE THE SIGNS OF AS IS D AND WHY IS EARLY DETECTION SO IMPORTANT? I HAVE ON THE SLIDES THE REVISED OBJECTIVES. THEY HAVE BEEN STREAMLINED TO BE IN A CONSISTENT FORMAT AND ALSO TO TRY TO TAKE CARE OF ANY REDUNDANCY BETWEEN OBJECTIVES TO MAKE THEM ALL DISTINCT. DO YOU HAVE ANY COMMENTS ON THE OBJECTIVES THEMSELVES OR ANY PART OF THE TEXT THERE? ANYTHING THAT WAS MISSING? THINGS THAT NEED TO BE CORRECTED OR ANY OTHER KINDS OF COMMENTS ON THIS CHAPTER? LAURA? >> LAURA: I'LL HAVE 22 MINOR CHANGES I'LL E-MAIL WHERE HRSA WAS INVOLVED IN SOME ACTIVITIES -- [ LOW AUDIO ] >> DR. DANIELS: GREAT. THAT SOUNDS FINE. DO YOU WANT ME TO READ YOU THE OBJECTIVES AND GO THROUGH THEM ONE BY ONE? OR ARE YOU FINE WITH LOOKING AT THEM ON THE SLIDES? YOU'RE GOOD? ANY OTHER COMMENTS ABOUT QUESTION 1? DAVID. >> DAVID: I WAS WONDERING IF SOMEONE WHO IS INVOLVED IN WRITING IT COULD HELP ME UNDERSTAND HOW THE SECOND BULLET UNDER OBJECTIVE 1, FITS THERE. >> DR. DANIELS: SO THAT WAS A PART OF WHAT THE WORKING GROUP PUT TOGETHER. I THINK THEY WERE THINKING ABOUT DISPARITIES ISSUES IN ENSURING THAT THERE IS EVIDENCE THAT THESISH VENTIONS WORK IN DIVERSE POPULATIONS. THAT IS ONE OF THE PARTS OF THE USPSTF RECOMMENDATIONS. >> DAVID: THAT'S FINE. THIS IS SORT OF A VALUE STATEMENT. BUT DOESN'T TELL ME WHAT TO DO. AND I WONDER IF SIMILAR TO THE WAY THAT THE BULLETS UNDER THE OTHER OBJECTIVES TELL ME WHAT I'M SUPPOSED TO DO AS A RESEARCHER OR POLICYMAKER. IT COULD BE REFRAMED. >> DR. DANIELS: YES, DO YOU HAVE A SUGGESTION ABOUT THAT? DOES ANYONE HERE HAVE A SUGGESTION ON HOW THAT COULD BE DONE? >> FRIDAY WORDING, I THOUGHT IT WAS RESEARCH NEEDED -- I THOUGHT FROM THE WORDING -- TO DEVELOP EARLY DETECTION METHODS, VALIDATED IN THESE POPULATIONS -- >> SO I THINK THAT THAT WILL BE A REASONABLE THING TO SAY BUT I'M NOT SURE HOW THAT STRENGTHENS THE EVIDENCE BASE FOR THE DETECTION FOR THE BENEFITS OF EARLY DETECTION. SO, IT SOUNDS LIKE A DISPARITY ISSUE THAT WE HAVE -- >> DR. DANIELS: SOME OF THE OTHER OBJECTIVES AND THEN A NEW OBJECTIVE I WILL BE INTRODUCING TO YOU ABOUT GIRLS. SO WE DO HAVE OTHER DISPARITIES ISSUES IN SOME OF THE OTHERS OBJECTIVES AS IN YOUR CHAPTER QUESTION 5. >> DAVID: SO RIGHT. I MAY BE OVER THINKING THIS. FEEL FREE TO TELL ME TO SHUT UP. BUT I WANT TO -- I WANT THIS TO GET THE ATTENTION THAT IT DESERVES. LIKE IF WE THINK THAT GIRLS ARE NOT DETECTED AS EARLY AS THEY SHOULD BE OR THAT PEOPLE WITH INTELLECTUAL DISABILITIES ARE NOT DETECTED AS EARLY AS THEY SHOULD BE BECAUSE WE DON'T HAVE THE RIGHT TOOLS OR BECAUSE THE WORKFORCE ISN'T AS ATTUNED TO THEIR NEEDS OR BECAUSE THERE IS SOME STATISTICAL DISCRIMINATION THAT GOES ON THAT IS INSTITUTIONALIZED IN OUR HEALTH CARE SYSTEM, I WOULD WANT TO CALL THAT OUT IN THE RIGHT PLACE AND THIS JUST DOESN'T SEEM TO CALL THAT OUT. >> WE HAVE THE CHAIRS OF THE WORKING GROUP HERE IN THE ROOM. I DON'T KNOW IF THEY MIGHT WANT TO MAKE COMMENTS OR IF THEY HAVE SUGGESTIONS ON HOW IT COULD BE MODIFIED. SO WE HAVE ANN WAGNER AND ALICE COW BACK HERE. DO YOU WANT TO MAKE ANY COMMENTS? >> I DON'T KNOW IF I CAN ADD TO THE INTENT. IT IS EXACTLY WHAT YOU'RE SAYING. SO I THINK IF THERE ARE SUGGESTIONS FOR HOW TO WORD THAT DIFFERENTLY -- . [ LOW AUDIO ] >> AND DAVID, YOUR POINT IS PARTIALLY THE WORDING THAT MOSTLY THE LOCATION. THE KEY -- IT DOESN'T ACTUALLY STRENGTHEN THE EVIDENCE BASE FOR THE BENEFITS OF EARLY DETECTION EVEN IF WE RAN 10,000 STUDIES. >> [ OFF MICROPHONE ] >> IS IT A MATTER OF RESEARCHING WHETHER THE SCREENING -- WHETHER THE METHODS WE HAVE FOR EARLY DETECTION WORK EQUALLY IN ALL THESE POPULATIONS? IS THAT THE QUESTION? >> THAT IS A GREAT QUESTION. JUST IT WOULD MEAN THAT WOULD GO UNDER REDUCING DISPARITIES IN EARLY DETECTION. >> JOSHUA GORDON: I DISAGREE BECAUSE IT'S NOT -- REDUCING DISPARITIES MEAN YOU HAVE DISPARITIES YOU NEED TO REDUCE. RIGHT? AND WHAT WE DON'T KNOW IS WHETHER WE HAVE DISPARITIES TO REDUCE OR NOT. ALTHOUGH MAYBE WE DO KNOW DID. I APOLOGIZE IF WE KNOW IT. BUT MAYBE THAT IS WHY IT'S AN OBJECTIVE ONE. >> IF THAT THE CASE THEN IT WOULD BE TO ENSURE THAT THE BENEFIT OF UNIVERSAL SCREENING IS EQUAL AMONG SUBGROUPS. WITH PERHAPS PARTICULAR ATTENTION TO GIRLS AND PEOPLE WITH INTELLECTUAL DISABILITIES. BUT THE WAY THIS IS WRITTEN IS TO IMPROVE EARLY DETECTION AND THAT THERE ARE THESE TWO GROUPS WHERE DETECTION IS NOT AS GOOD AS IT SHOULD BE. >> SO YOU WANT THE DISPARITIES ISSUE -- OR WE WANT THE DISSPARENTS ISSUE TO BE HIGHLIGHTED ELSEWHERE BUT THERE IS A SCIENTIFIC QUESTION WE DON'T WANT TO BE LOST. MAYBE TWO OF THEM. ONE IS, WE NEED TOOLS FOR EARLY DETECTION OF ASD IN GIRLS THAT DO A BETTER JOB BECAUSE MANY OF US BELIEVE THAT WE ARE MISSING A POPULATION AND WE WANT RESEARCH DIRECTED AT THAT AND THEN WE ALSO WANT TO TEST THE QUESTION OF WHETHER THERE ARE DIFFERENCES IN OUTCOMES AS A RESULT OF THAT EARLY DETECTION WHICH INTERFACES WITH THE IDEA WITH SHALLY DETECTION COMES EARLY INTERVENTION WHICH REFLECTS BACK INTO THE BASIC UNDERLYING BIOLOGY, ARE THERE DIFFERENT SENSITIVE PERIODS IN BOYS AND GIRLS THAT MIGHT OFFER BETTER OR WORSE OPPORTUNITIES FOR INTERVENTION. SO THERE ARE 3-4 INTERRELATED SCIENTIFIC QUESTIONS. >> ALL THOSE ARE AWESOME QUESTIONS. WHEN WE THINK AT THE END OF THE YEAR, AS WE ARE LOOKING AT WHAT WAS FUNDED AND AS IT FIT WITH THE OBJECTIVES, I THINK WE SHOULD BE CALLING OUT THINGS THAT -- WITH THAT IN MIND. WHAT IS THE GOAL? HOW ARE WE MEETING THAT GOAL? SO THOSE ARE ALL THREE GREAT QUESTIONS. AND YOU JUST ARTICULATED HOW THIS COULD FIT IN OBJECTIVE 1, 2 OR 3. WE SHOULD JUST FIGURE OUT WHERE IT BELONGS. >> SO I THINK THE INTENT FOR THIS ONE WAS FOR THE SECOND BULLET TO BE A FOLLOW ON TO THE FIRST ONE. WHICH IS ASKING FOR -- NOW IT'S GONE AGAIN. BUT IT'S ASKING FOR DEVELOPING METHODS AND I THOUGHT THAT THE SECOND BULLET WAS JUST MEANT TO SAY, IN DOING THAT, WE WANT TO MAKE SURE WE ARE TAKING INTO ACCOUNT THE DIFFERENCES IN THIS SPECIAL POPULATION SUCH AS GIRLS. >> THAT'S GREAT. BUT OBJECTIVE ONE IS NOT ABOUT IMPROVING EARLY DETECTION. OBJECTIVE ONE, IT IS A DIRECT RESPONSE TO THE PREVENTIVE PATH FORWARD SAYING WE HAVE TO SHOW THAT THERE IS A REAL BENEFIT TO EARLY DETECTION LEADING TO TREATMENT, LEADING TO APPROVED OUTCOMES. AND SO, ARE WE SAYING IN THE SECOND BULLET, WE NEED TO MAKE SURE THAT PATHWAY IS CLEAR FOR A LOT OF DIFFERENT GROUPS ESPECIALLY GIRLS AND PEOPLE WITH INTELLECTUAL DISABILITIES? >> THE TASK FORCE SPECIFICALLY TALKS ABOUT DISPARITIES. SO I THINK THAT IS WHAT THAT IS. >> JOSHUA GORDON: SO I THINK IF WE JUST PUT, THESE DESIGNS MUST PAY ATTENTION TO SPECIAL AUTISM POPULATIONS SUCH AS GIRLS AND INTELLECTUALLY -- INDIVIDUALS. IS THAT GOOD? >> IF THAT'S THE INTENT F THAT'S THE INTENT. BUT YES, THAT MAKES PERFECT SENSE. >> I THINK THAT IS THE INTENT. NOW THERE IS A BIG WORKING GROUP SO SOMEBODY REMEMBERS IT DIFFERENTLY, PLEASE SPEAK UP BUT I THINK THAT WAS THE INTENT FOR THIS ONE. BUT IF YOU'RE RAISING SOMETHING THAT IS MISSING FROM THE WHOLE THING THAT WOULD BE GOOD TO HEAR. >> DR. DANIELS: SO WITH THAT TYPE OF LANGUAGE CHANGE, DO YOU THINK THAT WOULD SOLVE THAT ISSUE? YOU HAVEN'T SEEN ALL THE REST OF THE OBJECTIVES AS YET EITHER SO THERE ARE PLACES WHERE DISPARITIES AND GIRLS ARE PROMINENT IN OTHER OBJECTIVES AS WELL. GO AHEAD. >> CAN I INTERJECT AND GET TO A MORE SIMPLE THING? I'M NOT SURE WHY WE ARE SAYING INTELLECTUALLY DELAYED INDIVIDUALS. AND I THINK PROBABLY THE MORE ACCEPTED LANGUAGE IS, INDIVIDUALS WITH INTELLECTUAL DISABILITY. IS THERE A REASON WHY -- IS THERE A STRONG FEELING IN FAVOR OF INTELLECTUALLY DELAYED? >> DR. DANIELS: THAT'S FINE. THAT IS THE LANGUAGE WE USED THROUGHOUT THE REST OF THE PLAN S INDIVIDUALS WITH INTELLECTUAL DISABILITIES. >> SAMANTHA: THANK YOU. I GET VERY DISTRACTED BY THAT AND IT'S HARD TO TALK ABOUT THE REST OF IT BECAUSE IT IS LEAPING OUT AT ME. >> DR. DANIELS: LEWIS? >> LEWIS: I WANTED TO SAY, I HAVE SOME CONCERNS ABOUT THE WAY THIS IS GOING. I MEAN, I THINK YOU GUYS GENERALLY DID AN EXCELLENT JOB IN EDITING. BUT I THINK EITHER THERE SHOULD BE ANOTHER SET OF CONFERENCE CALLS WITH THE COMMITTEE MEMBERS OR PERHAPS BOTH OF THESE, A SUBGROUP, PERHAPS THE CHAIRS OF THE COMMITTEES TO DISCUSS THIS. BECAUSE I HAVE EQUAL SORT OF DISCONTENT WITH MANY OF THE OTHER SECTIONS AND I CAN SEE THE WAY THE CLOCK IS RUNNING. I'M JUST NOT SURE WE ARE AS CLOSE AS YOU THINK. WE MIGHT BENEFIT FROM ANOTHER ROUND OF DISCUSSION. >> JOSHUA GORDON: CAN YOU BE MORE EXPLICIT? I'M NOT EXACTLY SURE -- I WANT TO KNOW MORE ABOUT WHY YOU FEEL IT'S NOT READY. >> LEWIS: WELL, IT'S AN EXCELLENT REVIEW, FOR EXAMPLE, BUT THERE ARE ISSUES THAT I THINK ARE QUITE IMPORTANT THAT ARE NOT BROUGHT OUT NOT SPECIFIC TO THIS SECTION. I THOUGHT THIS SECTION DISCUSSION WAS QUITE INADEQUATE, FRANKLY, IN TERMS OF WHAT WE KNOW ABOUT VARIOUS POSSIBLE MECHANISMS. I THINK THERE ARE ISSUES LIKE THE UPS AND DOWNS OF VARIOUS ANIMAL MODELS WHICH ARE SIMPLY NOT DISCUSSED. THERE ARE A NUMBER OF ISSUES ABOUT THE IMPORTANCE OF GENETIC EFFORTS, FOR EXAMPLE, GWAS WHOLE GENOME SEQUENCING VERSUS WHERE THE OPPORTUNITIES ARE. AND I DIDN'T SEE THAT IN THE SECTIONS THAT I AM IN. SO THAT IS WHY -- I THINK THE TEXT READS TERRIFICALLY. I JUST THINK SUSAN AND -- YOU AND YOUR COLLEAGUES HAVE DONE A GREAT JOB IN CLEANING UP OUR POOR USE OF ENGLISH AND GRAMMAR AND SO ON. I THINK AT THE END OF IT, IT WOULD STILL -- AFTER YOU DID THIS, THERE WAS NO EFFORT TO GO BACK TO THE COMMITTEES AND I DON'T MEAN THAT AS A CRITICISM. THAT'S FROM MY SECTION. ON WALTER AND MY RESPONSIBILITY. NOT YOURS. BUT I SUSPECT THAT IS TRUE OF EVERYTHING. AND I ALSO THOUGHT THAT MY PERSON OPINION IS THAT, SOME SMALL SUBGROUP, SHOULD PROBABLY JUST BE CHARGED WITH TAKING A LOOK AT THE WHOLE THING BECAUSE WE ALL KNOW THAT THE LARGER THE NUMBER OF PEOPLE THAT ARE INVOLVED, THE LESS RESPONSIBILITY EACH MEMBER OF THAT COMMITTEE FEELS. AND I MEAN, THAT IS ACTUALLY THE REALITY OF LIFE, WHICH IS WHY PEOPLE SAY YOU DON'T WANT ADVISORY BOARDS THAT ARE MORE THAN 5 OR 10. AND WE CLEARLY ARE MUCH LARGER BOARD. AND SO I'M NOT ADVOCATING THIS COMMITTEE AS A WHOLE NOT FINALLY HAVE THE OPPORTUNITY TO REVIEW OR ACCEPT THINGS BUT I THINK THERE IS SOME PROCEDURES THAT MIGHT MAKE THIS A BETTER DOCUMENT. >> DR. DANIELS: UNDER THE RULES, THE ENTIRE COMMITTEE MUST BE INVOLVED IN THE APPROVAL. WE COULD -- I HAVE PUT OUT A TIME FOR COMMENTS UNTIL AUGUST 4, WHICH I DON'T KNOW IF YOU WOULD WANT TO EXTEND THAT MORE. WE COULD TAKE MORE EXTENSIVE WRITTEN COMMENTS, DO ANOTHER REVISION AND THEN SEND IT BACK OUT TO THE COMMITTEE TO REVIEW AGAIN OR TO HAVE JUST THE CHAIRS LOOK AT IT AGAIN. AND THEN BRING IT BACK FOR OCTOBER. OR WE COULD TRY TO APPROVE ON THE PHONE. WE COULD DO THAT BUT WE WOULD HAVE TO HAVE A QUORUM OF THE COMMITTEE ON THE PHONE READY TO DO THAT WORK. >> PERSONALLY I WOULD BE MORE COMFORTABLE WITH OCTOBER. AND I THINK WHAT I WOULD PERSONALLY URGE IS A TWO-STEP PROCESS WHERE YOU HAVE ANOTHER SET OF CONFERENCE CALLS YOU HAD WITH EACH OF THE COMMITTEES ON THE QUESTIONS. BECAUSE I THINK REVIEW OF THE MEMBERS ON THE COMMITTEE HAVE TAKEN A SERIOUS LOOK AT THIS AFTER YOU GUYS CLEANED IT UP. AND THEN PERHAPS SOME SUBGROUP -- WITH FINAL APPROVAL IN OCTOBER. >> DR. DANIELS: THIS HAS NOT GONE BACK OUT TO WORKING GROUPS. THE WORKING GROUPS WERE ORIGINALLY SET TO BE COMPLETED, DONE WITH THEIR PART OF THE PROCESS, AND IT WAS GOING TO BE IN THE COMMITTEES HAND FROM HERE FORWARD. BUT, IF WE NEED TO, WE COULD RECONVENE THE WORKING GROUPS. I FEEL THOUGH, THAT AMONG THE COMMITTEE MEMBERS, YOU PROBABLY HAVE THE RESOURCES WITHIN THE COMMITTEE TO COMPLETE THIS WITHOUT GOING THROUGH A WHOLE NEW SET OF COMMITTEE WORKING GROUP CALLS. JOHN? >> JOHN: I THINK EVEN RECOGNIZING A VALID CONCERNS OF LEWIS AND THE OTHERS, I JUST THINK THAT YOU GUYS HAVE DONE A GOOD JOB PULLING THIS TOGETHER. WE ARE ALREADY SIX MONTHS LATE. WE HAVE FACED DELAYS FROM THE ELECTION AND CHANGES IN THE COMMITTEE AND ALL THESE THINGS AND MY VOTE IS TO JUST GET IT DONE. LET'S DO IT WITH WHAT YOU HAVE HERE AND NOW. >> DR. DANIELS: THIS DOCUMENT IS SETTING PRIORITIES FOR RESEARCH AND SERVICES THAT ARE IMPORTANT UNTIL THEY ARE DONE, THEY REALLY CAN'T BE ADVISING ANYONE. SO, THAT IS PART OF THE URGENCY. I WOULD HAVE LIKED TO HAVE SENT BACK THE REVISED VERSION FOR PEOPLE TO REVIEW AT MORE LENGTHS, BUT GIVEN THE URGENCY OF TRYING TO GET THE DOCUMENT DONE, WE WEREN'T ABLE TO DO THAT. BUT I'M HAPPY TO ADD MORE PROCEDURES IF YOU'D LIKE. >> JOHN: JUST REMEMBER FOLKS, ONLY A FEW MORE MONTHS AND WE'LL BE DOING THIS AGAIN. >> JOSHUA GORDON: SO I WOULD REVIEW OF THE CHAPTER BY CHAPTER EFFICIENTLY, AND IF -- AND THEN WE CONSIDER THE QUESTION OF WHETHER TO ACCEPT THIS DOCUMENT DESPITE ANY DEFICIENCIES THAT LEWIS OR OTHERS MIGHT RECOGNIZE WITH IT. AND WE'LL TAKE A VOTE OF THE COMMITTEE THAT THE POINT AND THEN AS TOO WHETHER WE NEED TO REVISE IT MORE SIGNIFICANTLY AND APPROVE IN OCTOBER OR DO SO NOW. >> DR. DANIELS: SOUNDS GOOD. SO QUESTION 1, WERE THERE ANY OTHER SUBSTANTIVE COMMENTS ON THE CONTENT, MAJOR AREAS THAT HAVE BEEN MISSED? ANYTHING THAT WAS CONTROVERSIAL? I'M NOT SEEING ANYTHING AROUND THE TABLE. IT LOOKS LIKE IT WAS JUST THAT SECOND BULLET OF OBJECTIVE 1 WHICH WE COULD CONTINUE TO WORK ON A LITTLE BIT. SO, THEN I'M GOING TO MOVE TO QUESTION 2, WHICH IS IT ABOUT THE UNDERLYING BIOLOGY OF THE AS IS D. AND IN THIS OBJECTIVE, I MEAN IN THIS QUESTION, WE PROPOSED A CROSSCUTTING OBJECTIVE THAT COULD SIT IN QUESTION 2 BUT PAY ATTENTION TO THE WORD, CROSSCUTTING. WE NOTICED THAT AS WE READ THE ENTIRE STRATEGIC PLAN FROM COVER TO COVER, THAT THE COMMITTEE AND THE WORKING GROUPS HAD HIGHLY PRIORITIZED RESEARCH ON WOMEN AND GIRLS THROUGHOUT THE STRATEGIC PLAN BUT THERE WAS NO SINGLE OBJECTIVE THAT CALLED THIS OUT AND THEY ARE WHAT IS USED BY THE AGENCIES TO HELP WITH THEIR PRIORITIES AND SO, WE WANTED TO PROPOSE TO YOU POTENTIALLY PUTTING THE IDEAS OF THE FULL COMMITTEE TOGETHER IN AN OBJECTIVE THAT WOULD FOCUS ON THESE ISSUES AND SO, WE PUT TOGETHER SOME LANGUAGE HERE THAT YOU CAN REVIEW BUT IT WOULD BE TO SUPPORT RESEARCH TO UNDERSTAND THE UNDERLYING BIOLOGY OF SEX DIFFERENCES IN ASD, POSSIBLE FACTORS THAT MAY BE CONTRIBUTING TO UNDER DIAGNOSIS, UNIQUE CHALLENGES THAT MAY BE FACED BY GIRLS AND WOMEN ON THE SPECTRUM AND DEVELOP STRATEGIES FOR MEETING THE NEEDS OF THIS POPULATION. BUT WE THOUGHT THAT CAPTURED MUCH OF WHAT WAS SAID THROUGHOUT THE STRATEGIC PLAN AND THE IDEA HERE WOULD BE WHY WE CALLED IT CROSSCUTTING IS THAT WE COULD STILL CODE INDIVIDUAL PROJECTS THAT WERE ON THESE DIVERSE TOPICS TO THEIR QUESTION IN THE PORTFOLIO ANALYSIS. SO IT WOULDN'T BE THAT ALL THE DOLLARS WOULD BE COUNTED UNDER QUESTION 2. THEY WOULD BE COUNTED WHERE THEY SHOULD BE BUT WE WANTED TO COALESCE THE IDEA OF DOING RESEARCH ON GIRLS -- RESEARCH AND IMPROVING SERVICES FOR GIRLS AND WOMEN INTO ONE PLACE. SO WE WANTED TO SEE WHAT THE COMMITTEE THOUGHT ABOUT THAT. LEWIS? >> LEWIS: I JUST WANT TO SAY I'M VERY SUPPORTIVE OF THAT CONCEPT. >> DR. DANIELS: JOHN? >> JOHN: I LIKE IT TOO. >> WHY IS IT UNDER QUESTION 2 AND NOT -- >> DR. DANIELS: SO WE COULD PUT IT ANYWHERE. IT REALLY DOESN'T HAVE TO SIT ANYWHERE. I JUST ARBITRARILY PUT IT AT THE END OF QUESTION TWO. I DIDN'T WANT IT TO FALL OFF AND NOT BE SEEN BY ANYONE. SO I THOUGHT THROWING IT IN THE MIDDLE MIGHT BE A GOOD THING. WE COULD PUT IT IT END OF QUESTION 1. IT HAS A COMPONENT OF EACH OF THESE SUGGESTIONS. I JUST DIDN'T WANT IT TO GET LOST. >> OBVIOUSLY I LOVE IT. AND I WOULD SUGGEST JUST IN TERMS OF SERIAL POSITION, THE BEGINNING AND END WOULD BE GREAT. BUT CERTAINLY THE BEGINNING PROBABLY SO THAT IT KIND OF IS CLEAR TO THE READER THAT IT BELONGS IN EACH OF THE AREAS. >> JOSHUA GORDON: SO SEPARATELY BEFORE CHAPTER 1? BFORE QUESTION 1? BUT BEFORE QUESTION 1? >> CORRECT, YES. >> DR. DANIELS: SO WE'LL FIGURE SOMETHING OUT IN TERMS OF HOW TO DO THAT. BUT SO, SOUNDS LIKE WE HAVE SOME SUPPORT FOR ADDING THIS CROSSCUTTING OBJECTIVE. I WANTED TO POINT THAT OUT SO WE WILL BE FOCUSING RESEARCH IN THAT AREA TO THAT OBJECTIVE AND THE OTHER OBJECTIVES HERE AGAIN HAVE BEEN REVISED JUST TO MAKE THE LANGUAGE A LITTLE BIT MORE STANDARDIZED. TRYING TO SHOW ACTION LIKE WHAT IS NEEDED IN EACH OF THESE AREAS. WERE THERE ANY COMMENTS ON THE CONTENT OF QUESTION 2? ANY AREAS YOU FEM HAVE BEEN MISSED? OR NEEDED MORE EXPLANATION? >> MAYBE I'LL ASK -- SO MOST OF THE EDITH YOU GUYS DID WERE TAKEN OUT -- EDITS -- AND WE ANALYZED IT PRETTY CAREFULLY, AND I GUESS WE WERE KIND OF COMFORTABLE WITH THE STUFF THAT WAS TAKEN OUT. IT WAS REFERENCED IN A SHORTER FORM BUT DO YOU HAVE OBJECTIONS FOR TAKING THINGS OUT, THE QUESTION FOR YOU WAS, YOU TAKE THINGS OUT BECAUSE -- >> DR. DANIELS: WE WERE TRYING TO GET EACH OF THE QUESTIONS TO THESE SORT OF A UNIFORM LENGTH. WE DIDN'T WANT ONE QUESTION THAT IS 3 TIMES AS LONG AS ANOTHER QUESTION. SO, THERE WAS SOME OF THAT AND PLUS READERS JUST HAVE A HARD TIME, THE LONGER IT GETS. SO WE TRIED TO MOVE ANYTHING TO BE PUT INTO A REFERENCE RATHER THAN HAVING TO BE EXPLAINED IN VERY GREAT DETAIL. ALSO JUST BEING LAY FRIENDLY AND NOT GETTING INTO TOO MUCH EXTREME DETAIL ABOUT MOLECULAR FUNCTION AND SO FORTH. [ LOW AUDIO ] >> DR. DANIELS: IF THERE ARE CERTAIN THINGS THAT YOU THINK BECAUSE OF THE EDITS HAVE BEEN MISSED IN SOME WAY, YOU COULD SEND US SOME COMMENTS. >> SOME THINGS ARE INCREDIBLY DIMINISHED. >> JOSHUA GORDON: USE THE MIC. >> EXCUSE ME. NOW, I WILL -- I READ THE NEW DOCUMENT BUT I DIDN'T COMPARE TO THE OLD. I PROBABLY SHOULDN'T SAY ANYTHING. >> JOSHUA GORDON: BUT JUST TO REITERATE, 3 OF THEM REFER TO QUESTION TWO AND QUESTION 3. SEX DIFFERENCES MAYBE -- >> SEX DIFFERENCES I THINK SEEMS TO -- I SHOULD SAY THERE IS CERTAIN ISSUES WHICH WERE NOT REALLY DISCUSSED. YOU POINT OUT IT'S VERY UNCLEAR WHICH ANIMAL MODELS ARE APPROPRIATE FOR WHICH -- THIS IS A BIG -- I CONSIDER THIS A VERY BIG ISSUE. I CONSIDER WHAT TYPES OF RISKS ANALYSIS SHOULD BE DONE PARTICULARLY WITH REGARD TO GENETICS WHERE I THINK THE QUESTIONS ARE PRETTY CLEAR IT'S A VERY SIGNIFICANT ISSUE WHERE THE BIGGEST BANG FOR THE BUCK IS. AND WE ARE CHARMED WITH SPENDING MONEY EFFICIENTLY -- CHARGED WITH SPENDING MONEY FIRSTLY, AND ON THE SEX DIFFERENCES AS I SAID , I THINK I WAS JUST NOT HAPPY AS I READ THROUGH THE THING. IT DIDN'T SEEM TO REFLECT OUR CURRENT KNOWLEDGE OF SEX OR THES BASISES SEX. >> JOSHUA GORDON: TO BRING UP THE POINT THAT WALTER WAS MAKING, WERE THOSE SECTIONS THAT WERE TAKEN OUT, DO WE -- >> DR. DANIELS: SO NO ENTIRE SECTIONS WERE TAKEN OUT. JUST LANGUAGE WAS EDITED DOWN. SO IF THERE IS A POINT THAT YOU THINK WAS REALLY IMPORTANT THAT GOT EDITED OUT, YOU COULD SENT US A COMMEN AND LET US KNOW TO TRY TO PUT IT BACK IN. DIANA? >> JOSHUA GORDON: IF YOU WANT TO GIVE US -- >> LEWIS: WITH THE EXCEPTION OF THE SEX DIFFERENCES. >> DR. DANIELS: LEWIS DID YOU ARE THED QUESTION 3 SEX DIFFERENCES INFORMATION? OKAY. THERE WAS A COMMENT YOU MADE AT THE LAST MEETING THAT WE DIDN'T ACTUALLY UNDERSTAND SO MAYBE WE COULD FOLLOW-UP. >> DAVID: I WANTED TO SAY SOME OF THIS IS COVERED IN SECTION 3. SO, OKAY. SO I THINK RISK ASSESSMENT IS IN THERE. ABOUT THE ANIMAL MODELS SECTION IN SECTION TWO WAS QUITE GOOD. IT LAID OUT AMBIGUITY OF CERTAIN ANIMALS NOT BEEN APPROPRIATE FOR SOME STUDIES BUT HIGHLIGHTING œEVENTUALLY -- AS A FORWARD- FORWARD-LOOKING DOCUMENT, THE POTENTIAL OF USING NON-HUMAN PRIMATES, THAT IS STILL IN THERE. SO I THOUGHT THAT WAS VERY GOOD. >> JOSHUA GORDON: MIKE IT'S NOT ON. >> MIKE: MAYBE I'M TOO MUCH IN THE WEEDS BUT I THOUGHT FOR EXAMPLE, WITH CHALLENGES OF ADEQUATE NUMBERS WITH PRIMATES, THE -- THERE ARE ISSUES LIKE THE CHALLENGES OF LEVEL OF DEVELOPMENT AND REPRODUCIBILITY OF MANY IDS -- THAT THESE WERE CERTAIN ONES SHOULD BE CLEAR ABOUT, WHAT LIMITATIONS ARE MAJOR CAVEATS AND APPROACHES AS WELL AS -- OTHERWISE WE ARE JUST NOT BEING CRITICAL. ANY WAY THAT'S THE FIRST ONE. >> JOSHUA GORDON: MAYBE WE CAN JUST SIT DOWN AT LUNCH AND TRY TO GO THROUGH IT. THAT WOULD BE GREAT. >> DR. DANIELS: YOU CAN ALWAYS SEND THINGS TO US AFTER THE MEETING. DIANA? >> DIANA: I WANTED TO RAISE A POINT ABOUT OBJECTIVE 3 UNDER QUESTION 2 WHICH SAYS, SUPPORT THE CREATION OF LARGE COHORTS, CHARACTERIZE BOTH PHENOTYPICALLY AND GEFELTICALLY WITH COMPLETE HEALTH RECORDS FROM EARLY AMIO GENESIS THROUGH ADULTHOOD. SO YOUR RECORDS WHEN YOU'RE AN EMBRYO ARE IN YOUR MOTHER'S HEALTH RECORD. SO, I THINK WHAT YOU WANT, FIRST OF ALL, YOU PROBABLY WANT SOME PRECONCEPTUAL GENETIC SCREENING AS WELL BECAUSE I CAN ENVISION WITHIN THE NEXT FIVE YEARS THAT THERE WILL BE SPECIFIC GENES IDENTIFIED THAT MAY COME AS PART OF A PRECONCEPTUAL GENETIC SCREEN THAT THE MOTHER AND THE FATHER GET, AND IT MIGHT BE INTERESTING TO KNOW PARTICULAR VARIANTS. BUT, WE SOMEHOW HAVE TO GET AT THE ISSUE THAT YOU WANT THE COMPLETE HEALTH RECORDS OF THE PREGNANCY AS WELL AS THE INDIVIDUAL. SO YOU WANT THE MOTHER'S RECORDS AND -- >> JOSHUA GORDON: IT DOESN'T SPECIFY T JUST SAYS COMPLETE HEALTH RECORDS T DOESN'T SAY WHO. -- [ READING ] >> BUT I THINK YOU'RE TALKING ABOUT AN INDIVIDUAL THAT -- SO I DON'T KNOW. TO ME IT SEEMS IMPRECISE BUT THAT'S THE WORLD I LIVE IN. THE MOTHER AND THE CHILD. >> IF DR. DANIELS: IF WE ADDED SOMETHING THAT SAYS SOMETHING ABOUT INCLUDING PRECONCEPTUAL GENETIC SCREENING DATA OR SOMETHING LIKE THAT. >> DIANA: PRECONCEPTUAL SCREENING DATA AS WELL AS PRENATAL RECORDS OR SOMETHING LIKE THAT. >> I'M SORRY. THIS IS SAM. I'M KIND OF ALARMED BY THE PROSPECT OF PRECONCEPTUAL SCREENING DATA AND I THINK THAT A LOT OF PEOPLE ON THE AUTISM SPECTRUM ARE A LITTLE ALARMED BY THAT TOO. I DON'T OPPOSE GENETIC RESEARCH BUT I THINK THAT PEOPLE ARE GOING TO READ THAT AS A GESTURE TOWARDS UNIVERSAL PRECONCEPTION SCREENING FOR AUTISM AND THAT IS GOING TO BE POLITICALLY-CHARGED. SO, IF WE COULD AVOID MAKING THAT IMPLICATION SOMEHOW THAT WOULD BE HELPFUL. >> I THINK THE SCIENCE IS BEGINNING TO MOVE THAT FATHERS MATTER AND THAT WE ARE SPENDING A LOT OF TIME FOCUSING ON WHAT HAPPENS BEFORE BIRTH, FOR EXAMPLE INULATE ROW WHERE YOU FOCUS ON THE MOTHER AND ON THE DEVELOPING EMBRYO FETUS. BUT IN FACT THERE IS MORE AND MORE DATA SHOWING FOR THE MOTHER AND THE FATHER, IT'S NOT ONLY THEIR GENETICS, IT'S ALSO THEIR ENVIRONMENTAL EXPOSURES AND DEFINED BROADLY, MAY MAKE A BIG DIFFERENCE. SO, THAT IS TRUE FOR EVERYTHING. >> JOSHUA GORDON: I WOULD ARGUE THOUGH, IN SUPPORT OF THE NOTION THAT THE LANGUAGE READ BY THE COMMUNITY AT LARGE, MATTERS. AGAIN, I'LL POINT TO COMPLETE HEALTH RECORDS. COMPLETE HEALTH RECORDS TO ME MEANS, ALL OF THAT. IT MEANS THE AGE OF THE FATHER, IT MEANS THE -- BUT AND THIS IS AN OBJECTIVE SUPPORT RESEARCH. IT'S NOT DESCRIBING THE DETAILS OF THAT RESEARCH WHICH COULD BE DEFINED BY THE RESEARCH FUNDERS. SO THE POINT OF PUTTING -- I THINK THE POINT THAT SAMANTHA IS PUTTING THAT LANGUAGE INTO HERE RAISES UNNECESSARILY RAISES ISSUES AND THAT JUST COMPLETE HEALTH RECORDS WITH MINOR THINGS ADDED, DEFINES WHAT WE ARE TALKING ABOUT. >> SO I APPRECIATE YOUR SENSITIVITY. WHAT I'M TRYING TO GET AT IS THE CAPACITY TO BE ABLE TO COLLECT INFORMATION IF IT'S AVAILABLE. SO MAYBE WE COULD REVISE THIS TO PHENOTYPICALLY AND GENETICALLY WITH COMPLETE HEALTH RECORDS FROM PRECONCEPTION THROUGH ADULTHOOD. PRECONCEPTIONS MEANS EVERYTHING WHETHER YOU TOOK PRENATAL VITAMINS BEFORE YOU GOT PREGNANT -- NOT SA YING PRECONCEPTUAL GENETIC SCREENING BUT -- TO ME, WHAT I REACTED TO WAS EARLY EMBRYO GENESIS. WHO HAS THE RECORDS ON EARLY EMBRYOGENESIS? SO IF WE JUST SAY COMPLETE HEALTH RECORDS FROM PRECONCEPTION THROUGH ADULTHOOD. >> JOSHUA GORDON: SAMANTHA? >> SAMANTHA: I WOULD LIKE TO FINESSE THAT A LITTLE BIT STILL LIKE MAYBE EVEN JUST SAYING, HEALTH RECORDS OF THE CHILD AND PARENTS, MIGHT HELP. BECAUSE WHEN WE SAY PRECONCEPTION, I KNOW A LOT OF PEOPLE IN THE AUTISM COMMUNITY WHEN THEY HEAR THAT, THEY WILL THINK LIKE OH, MY GOD, THEY ARE GOING TO LIKE PREVENT US -- THIS IS A UGENIC CAMPAIGN. I KNOW OUR COMMUNITY AND I KNOW THAT THAT IS GOING TO HAPPEN. >> WE COULD TALK ABOUT PARENTAL HEALTH LIKE THAT COULD BE A WAY OF MENTIONING THINGS THAT ARE -- PARENTAL HEALTH IS RELEVANT AND IT WON'T NECESSARILY BE READ IN THE SAME WAY. >> COULD WE SAY SOMETHING LIKE -- >> JOSHUA GORDON: SO -- >> GENETICALLY COMPLETE HEALTH RECORDS OF PARENTS AND THE CHILD FROM EARLY EMBRYOGENESIS THROUGH ADULTHOOD. >> DIANA: THE EMBRYO IS IN THE MOTHER'S RECORD. IT'S CONFUSING. WE DON'T REALLY KNOW A LOT ABOUT THE EMBRYO UNLESS YOU HAD PREIMPLANTATION GENETIC TESTING. SO YOU MIGHT KNOW ABOUT THE FETUS THROUGH ULTRASOUND. THE WORD EMBRYO TO ME -- I THINK IT WAS CLEANER THE WAY SAMANTHA SUGGESTED IT THAT COMPLETE HEALTH RECORDS FROM THE CHILD AND HIS OR HER PARENTS. THAT'S WHAT YOU WANT. SURE. >> JOSHUA GORDON: STRIKE THE TIME PERIOD. COMPLETE HEALTH RECORDS FROM THE CHILD AND PARENTS. >> THE MEDICAL RECORD THING IS -- [ LOW AUDIO ] THE MOST IMPORTANT PART WAS LONGITUDINAL PHENOTIPPIC AND GENOTYPIC. >> YOU WANT TO CAPTURE THE PREGNANCY AND THE FATHER'S EXPOSURES. >> ALAN KORETSKI MEDICAL -- WALTER: JUST THE MEDICAL RECORDS WAS A -- >> DR. DANIELS: ANY OTHER COMMENTS ON QUESTION TWO? WE ARE -- >> JOSHUA GORDON: SO I THINK. >> DR. DANIELS: WE ARE ALREADY INTO OUR LUNCH BREAK. >> JOSHUA GORDON: SUSAN AND I WILL LOOK AT THE AFTERNOON SCHEDULE AND FIGURE OUT WHERE WE CAN CONTINUE THIS. THERE HAVE BEEN COMMENTS AT EACH CHAPTER AND ALL THE THOUGH WE ARE TRYING TO GET THIS DONE THIS TIME, MAYBE WE WON'T BE ABLE TO. BUT IT IS APPARENT WE NEED TO SPEND MORE TIME ON IT THAN JUST THE HOUR WE ALLOTTED. SO SUSAN AND I WILL FIND OUT OR FIGURE OUT WHAT WE CAN DO THIS AFTERNOON. WE'LL BREAK FOR LUNCH AND RESUME HERE AT 1:00. (BREAK) JUST A QUICK ORGANIZATIONAL NOTE. REGARDING TIMING. WE WILL PROCEED WITH THE PUBLIC COMMENT SESSION FROM NOW UNTIL 2:15. AT 2:15, WE WILL HAVE THE PRESENTATION BY THE MADISON HOUSE AUTISM FOUNDATION. WE HAD 45 MINUTES FOR THE PRESENTATION AND HALF HOUR FOR DISCUSSION BUT IN THE INTEREST OF RESUMING DISCUSSION ON STRATEGIC PLAN, WE WILL CUT THAT SHORT A LITTLE BIT TO TWO ONE HOUR TOTAL. SO THAT WILL END AT 3:15. -- SORRY. 3:00. WE WANT TO GO 2:15 TO 3:00. WE HAD INITIALLY AN HOUR AND WE ARE CUTSING IT TO 45 MINUTES. AT 3:00, WE WILL TAKE OUR AFTERNOON BREAK AND WE WILL RESUME AT 3:15 WITH THE STRATEGIC PLAN DISCUSSION WHICH WE HOPE TO BE ABLE TO FINISH IN AN HOUR. SO THAT WILL BE 4:15. WE WILL HAVE THEN AN ABBREVIATED DISCUSSION OF THE SUMMER REEVER ADVANCES, 315-3:30sY AND WE CAN PUSH OFF DISCUSSION IF WE DON'T CONCLUDE UNTIL NEXT TIME BECAUSE THAT IS REALLY AN ANNUAL THING THAT ENDS IN JANUARY. FROM 4:30-5:00 WE WILL HAVE ABBREVIATED ROUND ROBIN. SO THAT'S HOW WE'LL FINISH, HOPEFULLY THE STRATEGIC DISCUSSION. BUT I DIDN'T WANT TO CUT INTO THE PUBLIC COMMENT SESSION. ESPECIALLY AFTER LAST TIME WE HAD FRUITFUL DISCUSSION IN LIGHT OF PUBLIC COMMENTS. SO WE'LL GET STARTED. WE HAVE FOUR ORAL COMMENTS AND THEN WE WILL HAVE A SUMMARY OF THE WRITTEN COMMENTS. WE WILL START WITH ORAL COMMENTS. WE HAVE FOUR PEOPLE. WE ALLOTTED A TOTAL OF 5 MINUTES FOR EACH OF THE PRESENTATIONS AND THEN IN THE SPIRIT OF LAST TIME, IF THERE ARE -- IF THE COMMITTEE WOULD LIKE TO DISCUSS IN BETWEEN THE PUBLIC ORAL COMMENTS, WE WILL TAKE A FEW MINUTES TO DISCUSS EACH ONE. IF NOTHING COMES UP IMMEDIATELY, THEN WE WILL WAIT UNTIL AFTER THE WRITTEN COMMENTS WHERE WE WILL CONTINUE TO HAVE DISCUSSIONS. SO THERE WILL BE OPPORTUNITIES IN BETWEEN THE ORAL COMMENTS FOR URGENT DISCUSSION AS NECESSARY AND THEN AT THE END OF THE WRITTEN COMMENTS FOR DISCUSSION TO THE PUBLIC COMMENTS. SO FIRST ORAL COMMENTER IS THOMAS FRAZIER. DR. THOMAS FRAZIER. GO TO THE PODIUM, PLEASE. >> THANK YOU, JOSH. THANK YOU AND THANK YOU TO THE COMMITTEE FOR THE OPPORTUNITY TO PROVIDE COMMENT. FOR THOSE WHO DON'T HE, I'M TOM FRAZIER, CHIEF SCIENCE OFFICER AT AUTISM SPEAKS. GRATEFUL FOR THIS CHANCE. I ALSO WANT TO ACKNOWLEDGE JERRY DAWSON AND ROB RING FOR THEIR PRIOR LEADERSHIP AT AUTISM SPEAKS SCIENCE. I'D LIKE TO THANK LEWIS AND THE SCIENCE FOUNDATION AS WELL AS ALISON SINGER AND ALICIA HOLIDAY AT AUTISM SCIENCE FOUNDATION. AND THE SCIENCE FOUNDATION BECAUSE THEY BOTH REACHED OUT AND SORT OF OFFERED TO FIGURE OUT WAYS TO BELIEVE COMPLEMENTARY AND COLLABORATIVE AS WE MOVE THROUGH AND TRY TO DEVELOP A STRATEGIC PLAN FOR SCIENCE. I'M GOING TO SPEND A FEW MINUTES GIVING AN UPDATE ON THE SCIENCE PORTFOLIO AT AUTISM SPEAKS. I WANT TO START OFF BY MENTIONING OUR MISSING PROJECT WHICH IS THE WHOLE GENOME SEQUENCING PROJECT OPEN SCIENCE. WE ARE TRYING TO GET AS MANY PEOPLE INTERESTED IN USING DATA AS POSSIBLE WITH GETTING UP TO 10,000 GENOME SEQUENCES. IT'S A PUBLIC-PRIVATE PARTNERSHIP BETWEEN GOOGLE, SICK KIDS AND AUTISM SPEAKS AND THE DATA ARE FREELY AVAILABLE FOR FOLKS TO ACCESS. WE EXPECT DATABASE 5 RELEASE IN THE FALL INCLUDING UP TO 8000 WHOLE GENOME SEQUENCES AVAILABLE ON THE GOOGLE CLOUD. CURRENTLY 5000 ARE AVAILABLE. AS I SAID, WE ARE TRYING TO GET AS MANY FOLKS TO ACCESS AND WE ARE SEEING ACCESS INCREASING OVER TIME WITH MORE THAN 100 INVESTIGATORS CURRENTLY. AND THE MISSING COMMUNITY PORTAL WILL BE LAUNCHING HOPEFULLY IN SEPTEMBER OCTOBER TIMEFRAME AND THAT PORTAL IS REALLY DESIGNED AROUND TRYING TO ALLOW INDIVIDUALS AND PARENTS TO CONNECT WITH OTHER INDIVIDUALS AROUND THEIR GENETIC SEQUENCE DATA AS WELL AS TO ACCESS ADVICE AND GENETICS COUNSELING: AND THE NEUROSCIENCE PAPER IS A GOOD EXAMPLE OF THE POWER OF THIS KIND OF APPROACH. THE PAPER TALKS ABOUT IDENTIFYING 61 RISK GENES ASSOCIATED WITH AUTISM, INCLUDING 18 THAT PREVIOUSLY DID NOT HAVE HIGH CONFIDENCE FOR THEIR ASSOCIATION. MORE IMPORTANTLY, IS THAT MANY OF THESE GENES ARE CLUSTERING INTO BIOLOGICAL PATHWAYS AND WE THINK THIS IS EXCITING BECAUSE SEVERAL OF THESE GENES AND PATHS WAYS HAVE PHARMACOLOGIC TARGETS ALREADY IDENTIFIED. AND BEFORE I MOVE O I WANT TO MENTION THAT THERE ARE A NUMBER OF EXOME SEQUENCING EFFORTS OUT THERE AND WE SEE MISSING AS BEING AN OPPORTUNITY TO COMPLIMENT THOSE EFFORTS AND ALLOW US TO LOOK AT NON CODING VARIATION IN ADDITION TO WHAT IS ALREADY BEING DONE. THE AUTISM TREATMENT NETWORK AS MANY OF YOU KNOW IS 13 SITES IN ACADEMIC MEDICAL CENTERS AROUND THE U.S. AND CANADA. IT'S COFUNDED BY HRSA AND I WANT TO ACKNOWLEDGE IT'S A DUAL NETWORK WITH THE AIR P NETWORK. AND THERE HAVE BEEN A NUMBER OF MILESTONES OVER THE LAST YEAR THAT HAVE BEEN ACHIEVED. I'M NOT GOING TO BE ABLE TO GO THROUGH ALL OF THEM BUT I WANT TO HIGHLIGHT A COUPLE HERE. ONE IS THE MORE THAN 320,000 DOWNLOADS OF HEALTH CARE TOOLKITS WHICH WE THINK IS EXCITING BECAUSE IT MEANS THAT THIS KNOWLEDGE IS GETTING DISSEMINATED TO PROVIDERS AND THE COMMUNITY. WE ALSO WANT TO ACKNOWLEDGE THE SUBSTANTIAL TRAINING EFFORTS OF THE NETWORK TO TRAIN MEDICAL PROVIDERS AND ALSO TO PROVIDE CARE COORDINATION FOR FAMILIES. I WOULD BE REMISS IF I DIDN'T TALK ABOUT OUR PREDOCTORAL FELLOWSHIP. THESE FELLOWSHIPS HAVE BEEN AROUND SINCE 2009 AND FILL A VERY IMPORTANT HOLE IN THE SPACE FOR THESE PREDOCTORAL LEVEL INDIVIDUALS. WE WANT TO ATTRACT REALLY INNOVATIVE FOLKS, PEOPLE DEDICATED AND WILL BECOME DEDICATED TO AUTISM SCIENCE. WE HAVE EIGHT ADDITIONAL FELLOWS APPROVED YESTERDAY SO WE'LL HAVE A FULL CLASS FOR 2017 AND A NUMBER OF THESE FELLOWS PROVIDE BLOGS AND INFORMATION ON OUR WEBSITE THAT I THINK FOLKS WOULD REALLY SHOULD ACCESS IF YOU HAVE A CHANCE. WE STARTED THIS STRATEGIC PLANNING PROCESS AND PART OF THAT IS OUR SURVEY. SOME OF YOU MAYBE ALREADY PARTICIPATED IN THAT. WE ARE TRYING TO GET AS MANY PEOPLE TO PARTICIPATE, INCLUDING A FULL RANGE OF AUTISM STAKEHOLDERS. WE HAD A MEDICAL AND SCIENCE ADVISORY COMMITTEE MEETING LAST WEEK THAT WAS VERY PRODUCTIVE AND MOVED US FORWARD ON OUR STRATEGIC PLAN AND AS I MENTIONED, WE WANTED TO BE AS COMPLEMENTARY AS POSSIBLE TO OTHER FUNDING SOURCES. WE WILL BE PRESENTING THAT PLAN TO THE BOARD IN OCTOBER 2017. THE SURVEY, WE HAVE MORE THAN 5000 RESPONSES TO DATE. A NUMBER OF MOMS HAVE RESPONDED ALTHOUGH WE DO HAVE GOOD NUMBERS IN OTHER CATEGORIES IN RELATIONSHIP TO AUTISM. AND I'M JUST GOING TO REVIEW A COUPLE OF THINGS HERE. FIRST THERE IS NO SLIDE ON THIS BUT WE LOOKED AT BASIC VERSUS APPLIED SCIENCE SEE THAT BOTH OF THEM ARE BEING RATED IN THE IMPORTANT RANGE WHICH I THINK IS ENCOURAGING. IT SHOWS THAT AT LEAST ON THE BASIC SCIENCE SIDE, PEOPLE ARE BECOMING MORE AWARE OF THE VALUE OF THIS, THE POTENTIAL VALUE OF THIS FOR AUTISM. WE DO SEE SOME VARIABILITY ACROSS THE SPECIFIC TOPICS. SOME OF THAT MAY BE DUE TO THE WAY WE FRAME THE QUESTION BUT I THINK IN GENERAL, THE POSITIVE HERE IS THAT MANY PEOPLE ARE SEEING THESE AREAS AS BEING IMPORTANT OR VERY IMPORTANT TO THE FUTURE OF AUTISM SPEAKS SCIENCE. WE ARE GOING TO BE COLLECTING ADDITIONAL RESPONSES AND ANALYZING THEM BY THE ROLE AND RELATIONSHIP WITH THE INDIVIDUAL TO AUTISM AND WE HOPE TO DISSEMINATE THAT INFORMATION SOON. AND THEN I'M GOING TO END BY MENTIONING THAT WE SEE OUR ROLE AS CHANGING SLIGHTLY. OUR NEW ROLE IS GOING TO BE TO SEED NOVEL PROJECTS. WE STILL WANT TO COVER THE FULL SPACE FROM DISCOVER TOW SOLUTIONS BUT WE KNOW WE NEED TO BE MORE TARGETED AND WE MIGHT HAVE UNIQUE ROLE IN FUNDING VERY PRACTICAL, MORE IMMEDIATE PROJECTS THAT CAN BRING RELIEF AND HELP AND INCREASED QUALITY OF LIFE TO CENTRALS AND FAMILIES. WE ALSO TALKED ABOUT TRANSITIONING OUR AUTISM TREATMENT NETWORK WITH IN WHICH CALL TRIALS CAPACITY AND WE OF COURSE WANT TO INCLUDE ADVOCATES SELF AND FAMILY ADVOCATES IN OUR REVIEW PROCESS AND WE HAVE BEEN DOING THAT INCLUDING THROUGH OUR MOST WEATHER STONE FELLOWSHIPS. AND WE SEE A UNIQUE ROLE FOR US IN CONNECTING THE COMMUNITY TO RESEARCH FINDINGS AND RESEARCH FINDINGS TO THE COMMUNITY. THANK YOU. >> JOSHUA GORDON: THANK YOU DR. FRAZIER. [ APPLAUSE ] SO THE NEXT ORAL COMMENTER IS CAROL WINE MAN IF YOU WOULD GO TO THE PODIUM. ARE THERE ANY URGENT QUESTIONS OR COMMENTS FROM THE COMMITTEE? OTHERWISE WE WILL PROCEED IS AND AGAIN WE'LL HAVE THE CHANCE TO DISCUSS AT THE END. >> I'M HONORED TO BE HERE. I'M AN STEARN. I HAVE BEEN A CRIMINAL ATTORNEY FOR 25 PLUS SOME YEARS. I STARTED AS A PROSECUTOR AND THEN BECAME AN EXPERT IN THE AREA OF AUTISM. I HAVE A SON ON THE SUSPECT RUM. AND A BROUGHT THE TWO TOGETHER. AND I'M GOING TO SPEAK TO YOU ABOUT TODAY, AND MY BIGGEST CHALLENGE IS KEEPING THIS TO 5 MINUTES. BECAUSE OF MY PASSION ABOUT THIS ISSUE, A CRIME IN AUTISM. WHAT WE ARE -- WHAT I SEE IN MY PRACTICE, I REPRESENT OFFENDERS WHO ARE ON THE SPECTRUM. WE HEAR A LOT ABOUT VICTIMIZATION WHICH IS A BIG AREA AND CERTAINLY AN IMPORTANT ONE. THEN WE SEE A LOT ABOUT WANDERING. WHAT IS A LOT OF PEOPLE ARE NOT AWARE OF IS HOW MANY OF THESE INDIVIDUALS ARE BECOMING CRIMINAL DE-- DEFENDANTS AND OFFENDERS. AND THE REASON FOR THAT ARE MANY, MANY OF THEM WHICH I SPEAK ABOUT OFTEN ARE THE CHARACTERISTICS THAT ARE UNIQUE TO THIS POPULATION, THEY TEND TO BRING THEIR ATTENTION TO POLICE OFFICERS AND LAW ENFORCEMENT. THEY ALSO OFTEN DO NOT UNDERSTAND THE CONSEQUENCES OR THE BEHAVIOR THAT THEY ARE DOING AND THAT IT IS CONSIDERED CRIMINAL. SO THEY ARE FINDING THEMSELVES BEING ARRESTED, PROCESSED, AND THEN SO WE HAVE THEM FROM THE FRONT END, WE HAVE THE ONES THAT ARE GETTING ARRESTED. THEN WE ARE DEALING WITH THEM ALL THE WAY THROUGH THE CRIMINAL JUSTICE SYSTEM TO THEN THE ISSUES THAT COME UP WITH BEING INTERVIEWED BY THE POLICE, THEN IN THE COURTROOM IF THEY MAKE IT TO TRIAL, THE ISSUES COME BEFORE US ABOUT THEM BEING PUT ON A WITNESS STAND AND SOME OF THE CONCERNS WITH THAT. SO THE GREATEST WAY TO APPROACH THIS AS MANY OF THE THINGS IN THIS AREA, ARE TRAINING AND EDUCATION. AND THERE NEEDS TO BE A HEIGHTENED AWARENESS OF THIS ISSUE AND HOW TO DEAL WITH IT. AND IN TERMS OF HOW TO DEAL WITH IT, NUMBER 1, AT THE FRONT END IS POLICE TRAINING WHICH I KNOW MENTIONED HERE IN TESTAMENTAR OF ELOPEMENT, HOW WE TRAIN THE POLICE SO WHEN THEY SEE THIS, THEY MAY BE KNOW IT'S A PERSON WITH AUTISM. THE PERSON IDENTIFIED AND THEY TREAT THEM DIFFERENTLY. MAYBE THEY WON'T TAKE THEM THROUGH THE SYSTEM. I HAD CASES WHERE THEY ARE NOT GETTING PROCESSED. AND THEN WE HAVE TO TRAIN THE PROSECUTORS SO THAT THEY UNDERSTAND WHY IT SHOULDN'T BE HANDLED AND CHARGED THE SAME WAY AS ANY OTHER CRITICAL DEFENDANT. THAT'S WHAT I DEAL WITH VERY MUCH IN MY WORK AND IT'S BEEN VERY CHALLENGING BUT ALSO VERY REWARDING. WE NEED TO DO IT ON A MUCH BIGGER SCALE IN TERMS OF TRAINING THEM TO UNDERSTAND THAT THIS ISN'T WHAT IT LOOKS LIKE. THAT'S WHAT I DEAL VERY MUCH WITH PROSECUTORS AND JUDGES IS THAT THEY JUST DON'T HAVE ANY UNDERSTANDING OF AUTISM. AND SO, ONCE THEY CAN BE MADE TO UNDERSTAND IT BETTER AND TO SEE THAT THERE WAS NO CRIMINAL INTENT TO COMMIT A CRIME AND WHAT THEY REALLY, REALLY WANT TO KNOW IS, WILL THIS THIS PERSON OFFEND AGAIN? AND IN MY EXPERIENCE, VERY FEW OFFEND A SECOND TIME. AND THE REASON FOR THAT IS BECAUSE ONCE WE TEACH THESE OFFENDERS FROM THE OTHER SIDE WHAT THEY DID WAS WRONG, AND TAKE STEPS TO PREVENT IT FROM HAPPENING AGAIN, AND MORE SO FOR THEM TO UNDERSTAND THAT IT'S CONSIDERED CRIMINAL, THEY DON'T DO IT AGAIN. A LOT OF IT IS THAT THEY DIDN'T EVEN KNOW WHAT THEY DID WAS WRONG OR SOCIALLY INAPPROPRIATE. BUT WE SEE A LOT OF -- I SEE A LOT OF SEX-RELATED CRIMES. AND REASONS FOR THIS ARE OBVIOUS BECAUSE THEY DON'T HAVE ENOUGH EDUCATION IN THAT AREA EITHER, AND MANY OF THEM TAKE TO THE INTERNET. AND WHAT IS HAPPENING WITH THAT IS THAT ONCE THEY TAKE TO THE INTERNET, OUT OF CURIOSITY, THEY ARE ON THE INTERNET AND ALL OF A SUDDEN BEFORE THEY KNOW IT, THEY PUSHED A BUTTON AND THEY ARE DOWNLOADING CHILD PORNOGRAPHY. AND EVEN THOUGH THE PERCENTAGE OF INDIVIDUALS -- AND IN MY EXPERIENCE, MOSTLY MALES, THAT ARE GETTING ARRESTED FOR THESE KINDS OF CRIMES, MAY BE MUCH LESS THAN INDIVIDUALS ON THE SPECTRUM THAT YOU ARE SEEING IN OTHER AREAS YOU'RE TALKING ABOUT ABOUT THE CONSEQUENCES ARE SO SEVERE THAT EVEN THOUGH THE PERCENTAGE MAY BE LESS, IT'S A REALLY SERIOUS ISSUE. ONCE THEY GET INTO FEDERAL SYSTEM, MANY OF THEM ARE GETTING CONVICTED OR DOING PLEAS FOR CHILD PORNOGRAPHY AND HAVING TO BE REGISTERED AS SEX OFFENDERS. AND THERE NEEDS TO BE SOME CHANGES IN THE LAW THERE TOO BUT THAT IS PROBABLY GOING TO BE DOWN THE ROAD IN TERMS OF THE REGISTRY ISSUE. BUT MORE IMPORTANTLY, WE HAVE GOT THIS VULNERABLE POPULATION, THEY HAVE ALREADY GOT SO MANY CHALLENGES THAT THEY ARE FACING UP AGAINST AND THEN ON TOP OF THAT, WE ARE GOING TO GIVE THEM A CRIMINAL RECORD, WHICH CHANGES THEIR ENTIRE COURSE OF THEIR LIFE. AND SO, MY JOB HAS BEEN TO PREVENT THEM FROM EVEN GETTING THE CRIMINAL RECORD. BUT IT'S ALSO RAISING AWARENESS, TRAINING, UNDERSTANDING, AND SO THAT IS MY 5 MINUTE MARK. THAT'S ALL I HAVE TO SAY THAT THE POINT, THANK YOU. >> JOSHUA GORDON: THANK YOU VERY MUCH. [ APPLAUSE ] FOR RAISING THIS WILL IMPORTANT ISSUE BEFORE US. IT'S VERY HELPFUL TO HEAR THOSE COMMENTS. OUR NEXT ORAL COMMENTER IS MARY JOE LANG. DR. LANG IF YOU WOULD MOVE TO THE PODIUM. AND LET ME ASK IF THERE ARE ANY COMMENTS OR QUESTIONS, COMMITTEE MEMBERS, REGARDING THAT LAST COMMENT WHILE DR. LANG TAKES THE PODIUM? >> I GUESS THE QUESTION THAT COMES TO MIND IS, IS THERE DATA OUT THERE PUBLICATIONS AND LAW JOURNALS WE SHOULD BE LOOKING AT THAT WOULD HELP US MOVE TO THE NEXT STEP? >> JOSHUA GORDON: SO, ARE THERE FOLKS WHO ARE AWARE OF DATEDDA REGARDING INVOLVEMENT WITH THE JUSTICE SYSTEM AND INDIVIDUALS WITH AUTISM? >> THERE IS SOME PUBLISHED RESEARCH, YES. I DON'T HAVE IT RIGHT NOW. >> JOSHUA GORDON: THAT IS SOMETHING FOR US TO FOLLOW-UP ON IN FUTURE MEETINGS. JOHN? >> JOHN: I WOULD JUST OFFER SOMETHING FOR COMMITTEE MEMBERS TO THINK ABOUT. SOME OF YOU KNOW THAT I ALSO SERVE THE JUDICIARY BRANCH OF GOVERNMENT AS AN EXPERT IN AUTISM IN CRIMINAL CASES. YOU JUST ASKED, ARE THERE STUDIES, FOR EXAMPLE IN JOURNALS ONE REAL PROBLEM IN UNRAVELING THE ISSUE OF AUTISM OR OTHER PSYCHIATRIC CONDITIONS IN SERIOUS CRIMES, IS THAT VERY OFTEN THE RECORDS OF AUTISM OR ANY PSYCHIATRIC CONDITION ARE SEALED. SO A PERSON WHO IS AN EXPERT WORKING ON THE LEGAL CASE MAY KNOW ABOUT THAT. SUCH A PERSON MAY HAVE WORKED ON OTHER CASES, AS I HAVE, AND KNOW ABOUT THOSE THINGS. BUT WE CAN'T SPEAK ABOUT THEM OR MUST BE ENGLISH ON THEM. -- PUBLISH ON THEM IT'S A DIFFICULT SITUATION. IT CONCERNS ME. SHE IS RIGHT TO BE BRINGING THIS UP. BUT I COULDN'T FOR EXAMPLE TELL YOU OF MY OWN EXPERIENCES ON THAT. AND I DON'T KNOW HOW TO GET AROUND THAT PROBLEM OTHER THAN MAYBE SOME GOVERNMENTAL ANSWER IN THE FUTURE. >> JOSHUA GORDON: GOOD POINT. THANK YOU. DR. LANG, GO AHEAD. >> DR. LANG: I WANT TO THANK THIS PRESTIGIOUS AUDIENCE FOR HAVING ME SPEAK FOR A FEW MINUTES. I'M ALSO VERY HONORED TO FOLLOW AN ATTORNEY, DEFENSE ATTORNEY, BECAUSE I HAVE BEEN AN EXPERT WITNESS AND I KNOW WHAT THAT IS LIKE. BUT I WANT TO SPEAK ABOUT MANAGEMENT BEFORE THE STUDENT GETS TO SUCH A SITUATION WHERE THEY NEED TO BE IN REALLY INCARCERATED. SO I'M CHANGING MY INITIAL REMARKS TO SOMETHING A LITTLE DIFFERENT. FIRST OF ALL, THE PROBLEM -- ONE OF THE PROBLEMS IN AUTISM IS JUST THE TEACHERS ARE R. AREN'T PREPARED. I HAVE A SCHOOL THAT I STARTED, WE ARE NOW UP TO 100 STUDENTS. WE HAVE EVERYTHING YOU CAN IMAGINE. THEY HAVE ART, MUSIC AND ALL THAT STUFF. THE PROBLEM IS THE TEACHERS WHO COME FROM THE UNIVERSITIES MAY HAVE HAD A COURSE. A COURSE DOES NOT MAKE YOU UNDERSTAND AND APPLY YOUR KNOWLEDGE TO A VERY COMPLICATED SITUATION. AND IT'S NOT ONLY THE STUDENT, BUT IT IS THE PARENT. THE PARENTS WHO ARE GRIEVING, WHO COME IN JUST STORMING AND RAGING AND IT'S ALL YOUR FAULT AND WHY MY CHILD ISN'T CURED. AND I'M SITTING HERE GOING, YES, UH-HUH. BECAUSE WHAT DO YOU SAY? THEY ARE JUST ANGRY. SO THERE IS LIMITED MENTAL HEALTH RESOURCES FOR PARENTS TO LEARN TO DEAL WITH THIS. MANY OF THEM ARE IMPOVERISHED. EVEN THOSE THAT HAVE RESOURCES DON'T FAREWELL WHEN THEY HAVE A CHILD WITH AUTISM OR A DISABILITY. SO, BY THE TIME YOU HAVE DEALT WITH THE CHILD -- AND I'LL TELL YOU HOW BAD IS IT. I GET -- THE SCHOOL I STARTED SERVES CHILDREN THAT ARE MODERATE TO SEVERE. DO YOU THINK THE SCHOOL DISTRICTS SENDS ME STUDENTS WHO ARE ASPERGER'S AND ON A DIPLOMA TRACK? ABSOLUTELY NOT. I GET THE STUDENTS THAT HAVE BEEN TIED UP AND HANDCUFFED IN THE BACK OF A PUBLIC SCHOOL CLASSROOM. OR HAVE BEEN ABUSED OR BROKEN A STUDENT WHO HAS BROKEN THE SPEECH THERAPIST'S ARM IN SPEECH THERAPY. THEN THEY CALL UP AND SAY DR. LANG, WE ARE IN EMERGENCY YOU HAVE TO DO SOMETHING. AND I HAVE TO WORK WITH THESE. I CALL MYSELF THE EMERGENCY ROOM FOR THE SCHOOL DISTRICTS. SO, IF THIS HAPPENS AT A VERY YOUNG AGE, YOU CAN IMAGINE BY THE TIME THE CHILD BECOMES AN ADD LESSENT AND YOU'RE READY TO TRANSITION TO THE WORKPLACE, YOU HAVE A VERY DIFFICULT SITUATION IN EDUCATING THE PUBLIC. EVERYBODY KNOWS -- YOU DON'T KNOW ABOUT AUTISM BY NOW, YOU HAVEN'T LISTENED TO THE NEWS. BUT, THEY DON'T REALLY WANT TO NECESSARILY INTEGRATE THEM INTO THEIR OFFICE. THEY DON'T UNDERSTAND WHAT IT WILL TAKE, HOW MUCH OF THEIR RESOURCES, SO THERE IS A WHOLE HOST OF COMMUNITY INVOLVEMENT AND ACTIVITIES THAT ARE NECESSARY AND EDUCATION THAT HAS TO TAKE PLACE. AND TO SUPPORT MY ATTORNEY FRIEND, OF EVEN MORE BECAUSE I HAVE SPOKEN ON THE ISSUE OF SEXUALITY AND PRESENTED IN SPAIN. I DID THE RESEARCH SO I COULD GO TO SPAIN. THE ISSUE IS NOBODY ADDRESSES IT. IF ANYTHING IS GOING TO KEEP YOU OUT OF THE WORKPLACE, AND OUT OF PUBLIC ACCESSING PUBLIC BENEFITS, WHATEVER THEY ARE, PARKS, THINGS, IT'S SEX ALL THEY AND THE INAPPROPRIATENESS BECAUSE THEY DON'T UNDERSTAND IT AND NEITHER DOT PARENTS. HOW MANY TYPICAL PARENTS SPEAK THEIR VERY TYPICAL CHILDREN ABOUT HOW MANY TIMES THEY ARE GOING TO MASTURBATE DURING THE DAY? I HAD TO GET OVER THAT SAYING THOSE KINDS OF WORDS. BUT THEY ARE NORMAL BEHAVIORS AND YOU HAVE TO TEACH IT IN AN APPROPRIATE WAY. SO THAT IS ONE THING THAT WILL KEEP THEM OUT OF JOBS AND BEING PRODUCTIVE CITIZENS AND HAVING A QUALITY OF LIFE THAT THEY WELL DESERVE. SO THANK YOU. [ APPLAUSE ] AND I DIDN'T USE ANY OF MY NOTES. >> JOSHUA GORDON: THANK YOU VERY MUCH. THAT WAS REALLY WONDERFUL AND COMPELLING DESCRIPTION OF THE IMPORTANCE OF WORKING IN THE SCHOOLS. OUR NEXT COMMENTER, MARGARET COMES UP TO THE PODIUM, I'LL ASK IF THERE ARE ANY RESPONSES OR COMMENTS FROM THE COMMITTEE? MARGARET? WE'LL GO AHEAD WITH THE WHIT EN COMMENTS AND IF THE ORAL COMMENTER COMES IN BEFORE WE MOVE O WE'LL HAVE HER COMMENTS THEN. WE UNDERSTAND SHE MIGHT BE ON CAMPUS SOMEWHERE. SO MAYBE SHE'LL SHOW UP LATER. SO, NOW WE'LL HAVE THE DESCRIPTION OF THE WRITTEN COMMENTS BY KAREN MOWRER. SHE IS SCIENCE POLICY ANALYST IN THE OFFICE OF AUTISM RESEARCH COORDINATION AT NIMH. >> THANK YOU. HI. SO SINCE THE APRIL MEETINGUX THE IACC RECEIVED WRITTEN PUBLIC COMMENTS FROM 17 EXTENTERS AND FOR THE PURPOSES OF THIS PRESENTATION, WE ORGANIZED THESE UNDER SIX BROAD TOPICS AND THE COMMITTEE HAS BEEN PROVIDED ALL OF THE COMMENTS IN FULL BUT I'LL BE SUMMARIZING THEM BRIEFLY HERE. SO THE FIRST TOPIC WAS AUTISM RESEARCH PRIORITIES. WE HAD NINE COMMENTS ON THAT TOPIC. NOEL ALLO, KAREN HARSH, JONI EEQUAL, LAUREN HARSH, GINA AND MARK SPEELO ASKED THE NIH TO FUND RESEARCH ON THE USE OF AN EXISTING ANTI-PAIR SIDDIC DRUG CALLED SERA MIN AS A POTENTIAL TREATMENT FOR AUTISM. A DOCTOR PROVIDED LINKS TO RECENT PUBLICATION AND ADDITIONAL INFORMATION ON THE TOPIC OF AUTISM HETEROGENEITY OVER TIME, AND HE OFFERED TO KEEP THE IACC UPDATED ON HIS RESEARCH. DR. SIMON ASKED THE IACC TO DISCUSS HER COMMENTS DESCRIBING POTENTIAL LINKS BETWEEN AUTISM, DISRUPTIONS IN LANGUAGE DEVELOPMENT AND COMPLICATIONS RESULTING IN BRAIN INJURY SUCH AS UMBILICAL CORD CLAMPING AND ASPHYXIA AT BIRTH. THE AUTISTIC SELF ADVOCACY NETWORK ASKED THE IACC TO PRIORITIZE ASD RESEARCH ON LIFESPAN OUTCOMES, CO-OCCURRING CONDITIONS, SUPPORT AND SERVICES, ASSISTIVE TECHNOLOGY, DIAGNOSTIC DISPARITIES, AND THE PREVALENCE OF AUTISM IN ADULTS. ASN URGED THE IACC TO PROMOTE THE INVOLVEMENT OF AUTISTIC ADULTS IN THE RESEARCH PROCESS. THE SECOND TOPIC WAS THE ROLE OF THE IACC. WE HAD FIVE INDIVIDUALS COMMENT ON THIS TOPIC. MARION DARR THANKED THE IACC FOR SCREENING THE FILM, AS ONE, THE AUTISM PROJECT, IN RECOGNITION OF AUTISM AWARENESS MONTH. Mr. OLSEN THANKED THE IACC FOR POSITIVE EXPERIENCE HE HAD WHEN PRESENTED IN ORAL COMMENT DURING THE APRIL 2016 IACC MEETING. Mrs. JOHN BEST EXPRESSED GENERAL FRUSTRATION ABOUT THE IACC. DR. EILEEN SIMON WOULD LIKE HER COMMENTS DISCUSSED RATHER THAN ONLY SUMMARIZED. SHE REQUESTED THAT MORE TIME BE SCHEDULED FOR THE DISCUSSION OF PUBLIC COMMENTS THAT THE IACC BE REQUIRED TO DISCUSS ALL THE WRITTEN COMMENTS, AND THAT THE DISCUSSIONS BE MODERATED BY IACC MEMBERS FAMILIAR WITH EACH TOPIC. Mr. DWIGHT FIELDS HIS COMMENTS FROM PREVIOUS MEETINGS HAVE NOT BEEN ADDRESSED AND ALSO RECOMMENDED THE IACC FACILITATE A SURVEY OF PARENTS OF AUTISTIC CHILDREN. THE THIRD TOPIC IS TRANSITION TO ADULTHOOD AND ADULT SERVICES. WE HAD TWO COMMENTS ON THIS TOPIC. Ms. HELEN WANTED TO MAKE THE IACC AWARE OF M BOT, EDUCATIONAL KIT DESIGNED TO TEACH COMPUTER PROGRAMMING SKILLS TO INDIVIDUALS WITH AUTISM. ASAN EXPRESSED CONCERN ACCORDING TO THE 2013 IACC PORTFOLIO ANALYSIS REPORT ONLY ABOUT 2% OF FEDERAL AUTISM RESEARCH FUNDING WENT TO RESEARCH ON SERVICE EFFECTIVENESS AND ACCESS WHILE ONLY ABOUT 1% WENT TO RESEARCH ON LIFESPAN ISSUES. THE FOURTH TOPIC WAS AUTISM RESOURCES AND SUPPORT. WE HAD TWO COMMENTS ON THIS TOPIC. Mr. SMITH WANTED TO MAKE THE IACC AWARE OF AN ON LINE RESOURCE AVAILABLE AT www.tuckdomewhichprovidessleepma nagementinformation.com-- AND Mrs. JAMIE WANTED TO MAKE THE IACC AWARE OF HER BOOK TITLED, HOPE FOR AUTISM. AND THE FIFTH TOPIC IS VACCINES IN AUTISM. WE HAD TWO COMMENTS ON THIS TOPIC. ANONYMOUS COMMENTER BELIEVES AUTISM IS CAUSED BY MERCURY IN VACCINES AND EXPRESSED FRUSTRATION THAT THE ISSUE IS NOT BEING ADDRESSED BY THE IACC. Mr. DWIGHT ASKED THE IACC DO INVESTIGATE HOW THIS MAY BE AFFECTING CHILDREN WITH ASD VERSUS THOSE WITHOUT ASD AND ALSO ASKED THE IACC TO REQUEST CONGRESS INVESTIGATE THE CDC WHISTLE-BLOWER ISSUE AND PROVIDE A FULL DEBRIEF OF THE STUDY ON AUTISM AND THE MMR VACCINE. AND THE LAST TOPIC IS THE IACC'S STRATEGIC MANUAL FOR AUTISM SPECTRUM DISORDER. WE HAD ONE COMMENT ON THIS TOPIC. AND IT WAS FROM AS IS AN. THEY CONTINUED CONCERNS ABOUT THE IACC'S STRATEGIC PLAN QUESTIONS. AS A N BELIEVES THE QUESTIONS SHOULD NOT SUGGEST THAT AUTISM SHOULD BE CURED OR PREVENTED AND ALSO ASKED THAT LIFESPAN ISSUES BE PRIORITIZED IN THE PLAN. SO THAT CONCLUDES THE SUMMARY AND WE THANK EVERYONE AGAIN WHO SUBMITTED WRITTEN COMMENTS. >> JOSHUA GORDON: THANK YOU, KAREN. WELL, WE NOW HAVE SOME TIME TO DISCUSS THE DISCUSSION CAN BE ABOUT THE WRITTEN COMMENTS OR THE ORAL COMMENTS AND I'D ENCOURAGE YOU ESPECIALLY SINCE SEVERAL OF THE WRITTEN COMMENTERS ASKED THAT THEIR COMMENTS BE DISCUSSED, THAT IF YOU FEEL LIKE YOU HAVE SOMETHING TO ADD, ANSWER, OR CONTRADICT, THE WRITTEN COMMENTS THAT YOU FEEL FREE TO DO SO AT THIS TIME. JOHN GO AHEAD. >> JOHN: I THINK I RAISED THIS ISSUE BEFORE BUT IS THERE GO WAY WE COULD DO SOME KIND OF -- THERE ANY WAY WE COULD DO A ROUNDTABLE DISCUSSION WHERE WE COULD ADDRESS SOME OF OUR CONSTITUENT'S CONCERNS AT GREATER LENGTH THAN THE FEW MINUTES WE HAVE FOR COMMENT SESSION IN HERE? I WOULD VOLUNTEER TO COME TO WASHINGTON FOR ANOTHER DAY IF WE COULD. BECAUSE I JUST SEE HOW IMPORTANT IT IS TO THESE PEOPLE WHO WRITE INTO US AND COME TO US. >> JOSHUA GORDON: WE HAVE ACTUALLY FOR THAT PURPOSE WE EXTEND THE THE PUBLIC COMMENT PERIOD FOR THIS MEETING TO AN HOUR AND 15 MINUTES. SO THAT MEANS WE ACTUALLY HAVE ABOUT 40 MINUTES TO DISCUSS ANY OF THE TOPICS YOU'D LIKE NOW. I APOLOGIZE IF YOU WEREN'T PREPARED TO DO SO BUT I FEEL LIKE WE HAVE THE OPPORTUNITY TO DO THAT NOW. THERE ARE SPECIFIC ITEMS YOU HAVE NOTICED OR IF YOU WANT TO TAKE TAKE A FEW MOMENTS TO LOOK THROUGH AND LOOK AT SOME OF THEM, THAT WOULD BE WONDERFUL. >> JOHN: YOU KNOW, ONE THING I WILL ASK, BECAUSE IT SPEAKS TO SEVERAL OF THE COMMENTS TODAY, IS HOW DO MY FELLOW COMMITTEE MEMBERS FEEL ABOUT US MAKING A COHERENT COMMITTEE STATEMENT ABOUT WHAT THE TRADE OFF OF ACCOMMODATION, ACCEPTANCE AND CURE, MEANS TO US. FOR EXAMPLE, I KNOW CURE IS A VERY CHARGED TOPIC. SOME PEOPLE INTERPRET IT AS CURE IS GETTING RID OF THE WORLD OF PEOPLE LIKE ME. I DON'T THINK ANY OF YOU BELIEVE THAT PEOPLE LIKE ME, SAM OR ANY OTHER AUTISTIC PERSON, SHOULD BE GOTTEN RID OF, BUT I UNDERSTAND HOW PEOPLE FEEL THAT WAY. SOME OF YOU HAVE SAID THINGS TO ME LIKE, IF MY AUTISTIC CHILD COULD SPEAK FOR HIMSELF THE WAY YOU OR SAM COULD, I WOULD CONSIDER MY CHILD CURED. I DON'T CONSIDER MYSELF CURED OF AUTISM BECAUSE I AM ABLE TO ADVOCATE FOR MYSELF OR OTHERS HERE IN THIS FORUM. BUT I UNDERSTAND THAT FEELING ON THE PARENT'S PART. MIGHT WE TRY AND DEVELOP A STATEMENT ON WHAT THIS MEANS TO US AND WHAT OUR OBJECTIVE IS? BECAUSE WHEN I RECEIVE LETTERS FROM PEOPLE AND THEY SAY, I CAN'T BELIEVE THAT IACC IS IN THE HANDS OF YOU NEURODIVERSITY PEOPLE, AND I WANT MY AUTISM CURED. I HATE MY AUTISM. IT'S HARD FORNY ANSWER THAT. I DON'T OPPOSE THE DEVELOPMENT OF ANY THERAPY TO HELP SUCH A PERSON. IF YOU FEEL LIKE YOU'RE IN PAIN FROM YOUR AUTISM. IF YOU CAN'T DO SOMETHING, I ABSOLUTELY SUPPORT DEVELOPING THERAPIES TO HELP WITH THAT. AND I THINK ALL OF YOU DO. AND I WONDER, CAN WE AS A GROUP ANSWER THAT? WHAT DO SOME OF THE OTHERS OF YOU THINK ABOUT THAT TOPIC? >> DR. DANIELS: THIS IS A TOPIC IN THE STRATEGIC PLAN AND COULD ALWAYS BE ENHANCED OR EXPANDED A LITTLE BIT IF YOU THOUGHT IT WAS SOMETHING THE COMMITTEE FELTED IT WAS IMPORTANT TO HIGHLIGHT IT IN A BIGGER WAY. WE COULD TAKE WHAT IS IN THE PLAN NOW OR IN THE INTRODUCTION OF THE PLAN EVEN AND TRY TO ENHANCE THAT. SO IT CAPTURES SOME OF THAT WOULD YOU LIKE ME TO WRITE SOMETHING AND SEND IT TO YOU? >> IN THE SPIRIT OF YOUR CHALLENGE, I WOULD LIKE TO TAKE THIS UP AS A DISCUSSION ITEM AMONG THE COMMITTEE. SO I'M WONDERING IF THERE ARE OTHER COMMENTS OR POINTS OF PLEASE GO AHEAD. >> I'LL TAKE AN ATTEMPT AT THIS. SO MY RESEARCH IS IN PRENATAL TREATMENT OF DOWN'S SYNDROME. AND THIS HAS COME UP EXTENSIVELY IN THE DOWN'S SYNDROME COMMUNITY AS WE QUERY THE ETHICS OF TRYING TO APPROACH NEURODEVELOPMENTAL DISORDER AND WORKING WITH EMPHASIS, I HAVE BEEN VERY STRUCK BY THE FACT THAT PROSPECTIVE PARENTS MAKE A DISTINCTION BETWEEN AN UNBORN CHILD THAT HAS NO PERSONALITY, AND A PERSON WHO HAS BEEN BORN AND EXPERIENCED A LIFE AND HAS A PERSONALITY. SO WE NEVER USE THE WORD, CURE, EITHER. WE USE THE WORD, TREATMENT OR ENCOURAGEING BRAIN GROWTH BECAUSE DOWN'S SYNDROME, ONE OF THE BIG PROBLEMS IS THERE IS MICROCEPHALY. SO TREATMENT IS A COMPLICATED ISSUE. THAT'S ALL I'M SAYING. AND THERE MAY BE DIFFERENT POINTS. GETTING BACK TO THE LIFESPAN WHERE WE ARE LOOKING AT EARLY EMBRYOGENESIS THROUGH ADULTHOOD, THERE MAY BE CERTAIN POINTS IN THE LIFESPAN WHERE IT MAY BE MORE APPROPRIATE TO THINK ABOUT TREATMENT. YOU LIVED A LIFE. I ARE WHO YOU ARE AND IT'S DIFFICULT TO THINK ABOUT WHO YOU ARE AND YOUR PERSONALITY WHICH IS SO INTRINSIC TO YOU. AND I WOULD SAY THAT FOR ANYBODY IN THE ROOM. SO I DON'T KNOW IF I'M BEING ARTICULATE BUT MY MAIN POINT IS THERE MAY BE CERTAIN POINTS IN THE LIFESPAN WHERE TREATMENT IS MORE ETHICALLY ACCEPTABLE AND APPROPRIATE IN THE CONTEXT OF HELPING INDIVIDUALS FUNCTION IN THE WORLD. FUNCTION INDEPENDENTLY IN THE WORLD. >> DO YOU SEE TREATMENT AS CURE? >> NOT USE THE WORD, CURE. >> CAN I -- WHENEVER WE TALK ABOUT EMPHASIS AND ABOUT WHAT PARENTS THINK VERSUS LIKE ABOUT FETUSES VERSUS INDIVIDUAL WHOSE HAVE ALREADY BEEN BORN, I WOULD SAY THAT IF WE DO HAVE THIS CONVERSATION, WE NEED TO MAKE SURE THAT WE ARE NOT JUST HEARING FROM PARENTS AND EMPHASIS BUT FROM ACTUAL AUTISTIC PEOPLE AND THAT INCLUDES PEOPLE ON THE AUTISM SPECTRUM WHO ARE NON-SPEAKING, PEOPLE WHO HAVE SERIOUS COMMUNICATION DIFFICULTIES, PEOPLE WITH INTELLECTUAL DIFFICULTIES, BECAUSE WHEN PEOPLE SAY, WELL, JOHN, LET'S KEEP JOHN THE WAY HE IS. WE ARE JUST GOING TO GO AND CHANGE THESIS OTHER PEOPLE. A LOT OF THE TIME THAT OTHER GROUP OF PEOPLE ALSO HAS OPINIONS ON THIS THAT CAN BE ASCERTAINED AND THOSE OPINIONS NEED TO BE TAKEN INTO ACCOUNT. >> JOHN: ABSOLUTELY IT'S IMPORTANT TO RECOGNIZE FOR EVERY ONE OF YOU -- I DON'T MEAN ANY OF YOU SPECIFICALLY. BUT EVERYONE WHO SAYS, JOHN OR SAM, DOESN'T NEED A CURE BECAUSE THEY CAN DO THIS -- YOU'RE GOING TO FIND THAT JOHN AND SAM WHO SAY, WELL, I DON'T THINK THAT I AM FREE OF DISABILITY. HERE IS WHAT I CAN'T DO. >> SAM: I DON'T THINK I'M FREE OF DISABILITY. I'M PRETTY DISABLED, ACTUALLY. >> JOSHUA GORDON: SO I MEAN, YOU BOTH IN DIRECTLY RAISED A POINTED THAT I THINK -- ALL THREE OF YOU, WE NEED TO MAKE EXPLICIT, RIGHT? SO IN THE NORMAL ADULT/DOCTOR PATIENT RELATIONSHIP, THE PATIENT MAKES THE DECISION ABOUT WHAT TREATMENT HE OR SHE WILL PURSUE PROVIDED THE PATIENT COMPETENT. AND SO FOR MOST MEDICAL DECISIONS, THE DOCTOR PROVIDES ADVICE. IT MIGHT BE VERY STRONGLY WORDED ADVICE, BUT ADVICE NONETHELESS AND THE PATIENT RETAINS THE DECISION-MAKING CAPACITY. THERE ARE ETHICALLY MORE STRAIGHTFORWARD SITUATIONS, LIKE THE ONE THAT DIANA DESCRIBED WHERE AN INDIVIDUAL LIKE -- THERE ARE CONDITIONS WHERE THE TREATMENT DECISION IS BEING MADE BY SOMEONE OTHER THAN WHO IS GETTING TREATMENT, WHERE IT'S CLEAR THAT THAT HAS TO BE. WHERE AN INDIVIDUAL, PATIENT CANNOT MAKE THE DECISIONS FOR THEM AND ETHICIST MADE IT CLEAR THAT OTHER PEOPLE SHOULD ACT IN THE BEST INTEREST OF THAT PATIENT AND THEN MAKE THE MEDICAL DECISION FOR THEM. WHAT IS TRICKY ABOUT THINKING AND TALKING ABOUT CURE WITH AUTISM OR PREVENTION WITH AUTISM, IS THAT IT'S PARENTS MAKING THAT DECISION POTENTIALLY VERY, VERY EARLY IN LIFE. BUT I DON'T THINK YOU WOULD GET VERY MUCH ARGUMENT WITH ETHICIST THAT PARENTS DON'T HAVE THE RIGHT TO MAKE THAT DECISION. >> SAM: THAT'S NOT REALLY THE QUESTION. I ACTUALLY THINK JUDITH WOULD -- WE WERE JUST TALKING ABOUT THE DEAF COMMUNITY AND PARALLELS WITH THE DEAF COMMUNITY. THERE IS A VERY LIVE DEBATE IN THE DEAF COMMUNITY ABOUT COCHLEAR IMPLANTS ON INFANTS. AND ABSOLUTELY FROM A MEDICAL ETHICS POINT OF VIEW, PARENTS CAN DECIDE WHETHER OR NOT TO PUT A COCHLEAR IMPLANT INTO THEIR CHILD BUT WHEN WE ARE TALKING ABOUT WHAT DOES THE COMMUNITY FEEL ABOUT THIS, DEAF ADULTS HAVE VERY STRONG OPINIONS ON WHETHER OR NOT THEY WOULD HAVE WANTED A COCHLEAR IMPLANT AS A CHILD. AND THAT'S OBVIOUSLY A VERY IMPORTANT THING TO TAKE INTO ACCOUNT. AND THAT HAS PARALLELS TO WHAT WE ARE SEEING HERE. >> JOSHUA GORDON: DAVID. >> DAVID: WE ARE TALKING ABOUT THIS WITHIN THE CONTEXT OF TREATMENT OR CURES, BUT I WONDER IF JOHN, THE LARGER QUESTION YOU RAISED, IS WHAT ARE THE UNDERLYING ASSUMPTIONS THAT GUIDE THE BOTH SPOKEN AND UNSPOKEN GUIDE THE DECISION THAT IS WE AS A BODY -- BECAUSE OUR STRATEGIC PLAN IS A SET OF DECISIONS, RIGHT? THIS IS WHAT WE PRIORITIZE. AND THIS IS WHAT WE THINK SHOULD BE FUNDED OR THE RESEARCH THAT SHOULD BE DONE. SO UNDERSTANDING THOSE ASSUMPTIONS, SOME OF WHICH RELATE TO TREATMENT AND CURES, SOME OF WHICH RELATE TO OTHER THINGS, IS PROBABLY PRETTY IMPORTANT. SO HOW IMPORTANT IS IT THAT WE HAVE CONSENSUS ON WHAT THOSE ASSUMPTIONS ARE VERSUS THAT WE HAVE ROBUST DISCUSSION OF WHAT THEY ARE? BECAUSE ONE OF OUR -- IN GOING THROUGH THE STATEMENTS ABOUT THE IACC THIS MORNING, WAS OUR RESPECT FOR DIVERSITY OF OPINIONS AND DIVERSITY OF VIEWS ON MANY OF THE ISSUES THAT WE ARE TALKING ABOUT NOW. SO I WOULD BE VERY OPEN TO DISCUSSION OF THESE THINGS AND TO MAKE SURE THAT WE ALL KNOW WHERE WE STAND AS INDIVIDUALS. I'M NOT SURE THAT IT'S EITHER INCUMBENT ON US OR HEALTHY FOR US TO COME TO CONSENSUS ABOUT WHAT ALL THOSE UNDERLYING ASSUMPTIONS ARE. >> I THINK YOU BEAUTIFULLY ARTICULATED A VERY IMPORTANT POINT AND I CAN ONLY ADD TO THAT, THAT THE DIVERSITY OF OPINIONS IS IMPORTANT AND THEN WHEN ONE CONSIDERS WHAT OUR OBJECTIVE MIGHT BE, WHICH IS TO OBTAIN FUNDING FOR OUR COMMUNITIES INTERESTS IN ORDER TO FUND RESEARCH AND SERVICES, THAT REQUIRES PUTTING FORWARD A CONCISE, CLEAR, STATEMENT ABOUT WHAT WE WANT FUNDED. AND THAT'S THE ONLY TIME THAT WE ALL NEED TO STAND IN UNISON. AND IN THE YEAR THAT I HAVE BEEN IN DC, I HAVE LEARNED IN TALKING WITH PROFESSIONAL POLITICIANS, THAT THEY LOVE THE AUTISM COMMUNITY, LARGELY BECAUSE THEY CAN SAY THEY LOVE CHILDREN, SUPPORTIVE OF AUTISM AND AUTISM RESEARCH. AND MIND YOU ON BOTH SIDES OF THE AISLE. AND WOULD LOVE TO DO SOMETHING TO HELP. AND THEN OUR VERY FAMILIAR WITH THE DIFFERENT FASHIONS AND THE DIFFERENT ARGUMENTS AND THE DIFFERENT VIEWS. AND THEY QUICKLY POINTED THOSE OUT WHENEVER YOU BEGIN TO TALK ABOUT WHAT YOU WOULD LIKE TO SEE DONE. AND AS I HAVE GOT EN TO KNOW SOME OF THEM BETTER, THEY POINT OUT VERY FRANKLY THAT ONE OF THE REASONS YOUR COMMUNITY IS SO LOVED IS THAT YOU'RE NOT PRESENTING A COHERENT SET OF ASKS. [ LAUGHS ] AND THEREFORE, LIP SERVICE IS FREE AND THERE IS PLENTY OF THAT IN TOWN. AND SO, IT SORT OF UNTIL THE COMMUNITY PRESENTS THAT SET, WHICH YOU COULD THINK OF THE STRATEGIC PLAN BEING THAT, WE ARE NOT GOING TO GET ANYTHING. SO IF WE SPEND TIME TRYING TO BUILD CONSENSUS WITHOUT KEEPING THAT END GOAL IN MIND, THEN I FEAR THAT IT WILL BE A WASTE OF TIME, NOTED A WASTE OF TIME IN TERMS OF EXTRA ESSENTIALLY, BUT RATHER IN TERMS OF GETTING THAT PRODUCT DONE; BECAUSE IT SOUNDS LIKE WE ARE IN BROAD STROKES AGREEMENT ABOUT MOST THINGS, IF NOT THE MOST IMPORTANT THING FOR A COMMITTEE, WHICH IS THE GENERAL RESPECT FOR EACH OTHER'S POINTS OF VIEWS AND WISHES. AND THEREFORE, CAN DEVELOP A SET OF ASKS. SO I'M KIND OF SPEAKING AS A PARENT OF A CHILD THAT IS FAIRLY HEAVILY EFFECTED BY HER AUTISM AND EPILEPSY, AND WOULD BE ONE OF THOSE PARENTS THAT WOULD SAY, WELL, I HOPE SHE TURNS OUT A LOT LIKE SAM. BUT, THEN I ALSO VERY WELL AWARE OF THE, THEN WHAT? SO IT SORT OF -- I CAN SEE BOTH SIDES OF IT VERY CLEARLY. >> JOSHUA GORDON: JOHN. >> JOHN: I THINK THAT THAT IS SAY GOOD POINT. WE DON'T HAVE TO MAYBE ALL AGREE WITH EVERYTHING THAT WE WANT. BUT WHAT I ENGAGE THE PEOPLE WHO CHALLENGE THE IDEA OF NEURODIVERSITY PEOPLE, YOU'RE OPPOSED TO CURE, I WANT A CURE, AND I SAY WHAT SPECIFICALLY WOULD YOU CHANGE ABOUT YOURSELF? OR WHAT WOULD YOU CHANGE ABOUT YOUR CHILD? AND MOSTLY WHAT I HEAR IS, I WOULD FIX THIS THING, THIS DISABILITY. MAYBE THEY CAN'T TALK. MAYBE IT'S COGNITIVE FUNCTIONS, WHATEVER. AND CLEARLY SAM AND ME AND YOUR CHILD, WE HAVE A DIFFERENT CHALLENGES BECAUSE OF AUTISM AND EACH OF US WOULDS SAY, MAYBE I WOULD CHANGE THIS THING IN ME OR MAYBE NOW AT MY AGE, I WOULD JUST LIVE WITH THIS THING IN ME. BUT I'M NOT OPPOSED TO ANYONE WHO SAYS, I WANT TO FICTION THIS THING IN ME. I WANT TO MAKE MYSELF BETTER. AND MY QUESTION THEN IS, IFFY WOO ALL AGREE WITH THAT, WE SHOULD AGREE WITH THE GENERAL STATEMENT THAT I WANT TO DEVELOP THE TOOLS WITH GOVERNMENT FUNDING -- I THINK IT'S A JOB OF GOVERNMENT TO PROVIDE THIS KIT OF TOOLS AND THERAPIES THAT CAN ASSURE THE BEST QUALITY OF LIFE FOR EVERY AUTISTIC PERSON. AND THAT MEANS MAYBE YOU NEED SPEECH HELP. MAYBE YOU NEED GI HELP. MAYBE YOU NEED COGNITIVE HELP. I THINK THAT'S A JOB OF GOVERNMENT TO DO THAT RESEARCH AND PROVIDE THOSE THINGS. AND IF YOU AGREE, YOU SHOULD JOIN US IN THAT QUEST AND WE SHOULD PUT ASIDE A FIGHT OVER SEMANTICS. BECAUSE I FEEL LIKE THE FIGHT OVER SEMANTICS IS SIGNIFICANTLY HARMFUL TO US AS A GROUP BECAUSE WE CANNOT MOUNT A COHERENT EFFORT TO GET WHAT WE WANT. >> JOSHUA GORDON: SO JOHN, I THINK THAT IS SAY WONDERFUL POINT AND THAT CRYSTALLIZES WHAT IS REALLY IN OUR VISION STATEMENT. OUR VISION STATEMENT IS STRATEGIC PLAN WILL ACCELERATE AND INSPIRE RESEARCH THAT WILL PROFOUNDLY IMPROVE HEALTH AND QUALITY OF LIFE FOR EVERY PERSON ON THE AUTISM SPECTRUM. >> JOHN: THAT IS A GREAT STEP. >> JOSHUA GORDON: IT IS. I ADMIRE YOUR ATTEMPT TO BRING IT BACK TO THIS ISSUE WHICH IS MORE THAN SEMANTICS BUT PERHAPS NOT CONSENSABLE -- THAT'S NOT A WORD. BUT AND I'M GLAD WE ARE HAVING THIS DISCUSSION. I THINK IT'S A DISCUSSION WE NEED TO HAVE EVERY NOW AND THEN TO REMIND OURSELVES OF THE DIFFERENT PERSPECTIVES AROUND THE TABLE. DAVID. >> DAVID: SO I JUST, JOHN, I THINK THE QUESTION 3, WHAT IT'S ABOUT IS THAT RESEARCH IS FOSTERED TO TRY AND PREEMPLOYMENT AND PREVENT DISABILITY FOR THOSE WITH AUTISM, SORT OF BROADLY SPEAKING >> [ OFF MICROPHONE ] >> DAVID: BUT WE AGREE THAT IS THE GOAL, IS ALL I'M SAYING. AND SO, I THINK IT'S GOING TO BE IMPOSSIBLE -- I AGREE WITH KEVIN AND THE WHOLE CENTER OF THIS DISCUSSION -- TO SAY ANYTHING MORE THAN THAT. BECAUSE I DO AGREE WITH YOU. WHEN MANY PARENTS SAY WE WANT TO CURE OUR CHILD, WHAT THEY ARE REALLY SAYING IS THEY WANT TO ELIMINATE THE GASTROINTESTINAL PROBLEMS OR THEY WANT THEM TO SLEEP NORMALLY OR THEY DON'T WANT THEM TO HAVE ANXIETY. THOSE ARE COMPONENTS OF AUTISM. I THINK OUR RESEARCH AGENDA IS TRYING TO ATTACK THOSE ISSUES. FOR DIFFERENT PEOPLE IT'S GOING TO BE DIFFERENT ISSUES. AND I THINK WE ALL AGREE. I DON'T THINK THERE IS ANY DISAGREEMENT FOR DIFFERENT PEOPLE AND PERSONALITIES TRYING TO HAVE TO ADDRESS DIFFERENT ASPECTS OF CONCERNS. FOR YOU IT'S THE ISSUE THAT IS BOTHER YOU. WE SHOULD BE DEVELOPING A RESEARCH AGENDA THAT HELPS PEOPLE ON YOUR SITUATION OR FOR AN INDIVIDUAL WHO DOESN'T SLEEP AT NIGHT, THERE IS A WHOLE NEW AGENDA OF TRYING TO UNDERSTAND SLEEP DISTURBANCES AND AUTISM. SO, I GUESS I AM SYMPATHET WICK WHAT YOU'RE SAYING BUT I DON'T THINK WE DISAGREE. I THINK THIS IS WHAT THE STRATEGIC EXPLAIN TRYING TO GET AT. >> JOHN. T SOUNDS LIKE WE DO HAVE THAT CONSENSUS AND MAYBE WE JUST NEED IT ARTICULATED IN WORDS IN OUR WRITTEN PLAN. >> JOSHUA GORDON: I THINK ACTUALLY I THINK IT IS THERE IN THE VISION STATEMENT. IT'S THERE IN CHAPTER 3. BUT NONETHELESS, I THINK IT IS LIKE I SAID, I'M GLAD WE HAD THIS TIME TO DISCUSS IT. I WOULD LIKE TO ASK IF THERE ARE OTHER -- NOW THAT WE HAD A CHANCE TO LOOK AT SOME OF THE WRITTEN COMMENTS AND CONSIDER ORAL COMMENTS IF THERE ARE OTHER TOPICS THAT INDIVIDUAL BROUGHT UP THAT MEMBERS OF THE COMMITTEE WOULD LIKE TO DISCUSS. >> SAM: CAN I BRING SOMETHING UP? >> JOSHUA GORDON: PLEASE. >> SAM: THERE IS DEFINITELY SOME CONVERSATION ABOUT SERVICES IN THE COMMENTS AND I DON'T THINK THAT BECAUSE OF THE DEADLINE, I DON'T THINK COMMENTERS HAVE THE UNITY TO RAISE THIS ISSUE. BUT I FEEL LIKE I HAVE TO ANYWAY. THOSE SERVICES ARE POTENTIALLY GOING TO BE IMPACTED BY POLICIES THAT ARE BEING DEBATED IN THE SENATE RIGHT NOW. WE KNOW THAT ALMOST ALL OF THE HOME AND COMMUNITY-BASED SERVICES FOR PEOPLE ON THE AUTISM SPECTRUM, ALL OF THE SUPPORTIVE HOUSING SERVICES, ALL OF THE JOB SERVICES, OR NEARLY ALL THE JOB SERVICES, QUITE A LOT OF SPECIAL EDUCATION SERVICES, THESE ARE ALL FUNDED BY MEDICAID. AND WE ARE LOOKING AT A SIGNIFICANT CUT IN MEDICAID. AND IF THAT CUT HAPPENS, THOSE SERVICES AND I KNOW MANY OF THE OTHER MEMBERS OF THIS COMMITTEE HAVE BEEN SPEAKING OUT ON IT. MANY OF THE SERVICES ARE AT RISK. I ALSO WANTED TO BRING UP THAT TODAY IS THE 27th ANNIVERSARY OF THE PASSAGE OF THE AMERICANS WITH DISABILITIES ACT. IT'S KIND OF COINCIDENTAL WE ARE MEETING ON THE EXACT ANNIVERSARY AND THAT LAW HAS DONE SO MUCH TO MOVE US OUT FROM INSTITUTIONS AND INTO THE COMMUNITY AND TO REAL JOBS AND INTO INTEGRATED EMPLOYMENT AND EDUCATION. AND WHEN PEOPLE TALK ABOUT OLMSTEAD, MOVING PEOPLE OUT FROM INSTITUTIONS INTO THE COMMUNITY, THAT DECISION BY THE SUPREME COURT WAS BASED ON THE AMERICANS WITH DISABILITIES ACT. SO, IT'S A VERY IMPORTANT DAY FOR US AS A RESULT OF THAT. AGAIN, WHEN PEOPLE DO OLMSTEAD WORK, WHETHER THEY TRY AND MOVE SERVICES FROM THE INSTITUTIONAL SETTINGS TO THE COMMUNITY, MEDICAID IS ALMOST ALWAYS THE MAIN FUNDER FOR THOSE SERVICES. AND I JUST WANTED TO REMIND THAT OF EVERYONE AND I HOPE THAT THERE IS A LIMITED AMOUNT OF -- THAT I CAN SAY AS AN IACC MEMBER BUT I REALLY HOPE THAT PENAL ARE TAKING THAT AWARENESS INTO THE REST OF THEIR PROFESSIONAL LIVES AND WORKING TO EDUCATE THE COMMUNITY ON THAT. THANK YOU. [ APPLAUSE ] Y. >> JOSHUA GORDON: DAVID. >> DAVID: I WANTED TO COMMENT ON ONE OF THE WRITTEN SUMMARIES DR. EILEEN NICOLE, WHO HAS BEEN HERE AND PRESENTED, AND SHE WAS ONE OF THE PEOPLE THAT SAID, WHY DON'T WE TALK MORE ABOUT IT. AND I FEEL BAD THAT WE DON'T HAVE ENOUGH TIME TO ADDRESS SOME OF THESE ISSUES. AND IN THE PARTICULAR CASE OF DR. SIMON, SHE HAS FOR A NUMBER OF YEARS, HAD ADHERE ABOUT WHAT BRAIN ARRANGEONS MIGHT BE MOST DAMAGED LEADING TO AUTISM AND HAS TALKED ABOUT CHILDHOOD ASPHYXIA DURING DELIVERY AND THINGS LIKE THAT. I JUST WANT TO PUT ON THE RECORD THAT I THINK THESE ARE ALL INTERESTING IDEAS AND SHE HAS DONE A HUGE AMOUNT OF RESEARCH OVER TENS OF YEARS. THE PROBLEM IS, WE DON'T HAVE THE MATERIAL IN TERMS OF POST MORTEM BRAIN MATERIAL AND OTHER RAW MATERIAL TO PROVE SOME OF HER THEORIES. AND SO, I THINK IN A CASE -- IN THIS CASE, IT'S NOT SO MUCH SHE MAY BE WRONG. IT'S THAT SHE IS PROPOSING VERY INTERESTING, PROVOCATIVE IDEAS. IT'S JUST THAT WE DON'T HAVE THE WHEREWITHAL AT THIS POINT IN TIME TO PROVE HER THEORIES. SO I THINK I JUST WANTED TO MAKE SURE THAT PEOPLE KNOW WE ARE NOT PAYING ATTENTION TO THESE THINGS AND IN TIME, PERHAPS, WE COULD COME BACK. >> JOSHUA GORDON: LET ME UNDERSCORE YOUR STATEMENTS AND YOU MIGHT WANT TO ADD SOMETHING OF YOUR OWN WITH REGARD TO THE NEED TO CONTINUE THE DEVELOPMENT OF BRAIN BANKS SO WE CAN DO THESE KINDS OF POST MORTEM STUDIES. SO NIMH HAS A BRAIN BANK WHICH INCLUDES AUTISM. I ENCOURAGE ANYONE LISTENING OUT THERE TO GO AND VISITS THE NIMH WEBSITE AND DO A QUICK SEARCH FOR THE BRAIN BANK, AND YOU CAN LEARN ABOUT HOW TO DONATE BRAINS -- OF COU RSE AFTER YOU DIE. WE DON'T TAKE THEM FROM YOU WHEN YOU'RE ALIVE. AND DAVID, I KNOW YOU HAVE AN EFFORT THAT YOU MIGHT NOT TO ALSO PUBLICIZE. >> DAVID. I'LL JUST SAY A QUICK WORD THAT FROM FUNDING FRIDAY SIMON'S FOUNDATION, WE HAVE INITIATED AUTISM BRAIN BED. IF ANYBODY IS INTERESTED IN GETTING MORE INFORMATION, GO TO www.takesbrains.org AND SIGN UP FOR A REGISTRY AND YOU'LL GET A QUARTERLY NEWSLETTER. YOU'RE MAKING NO COMMITMENT WHATSOEVER. WE JUST HAVE HAD OUR 100th DONATION TO AUTISM BRAIN. SO WE THANK THE COMMUNITY FOR CONSIDERING THIS. OBVIOUSLY VERY IMPORTANT DONATION. BUT WE WANT TO GET MORE AND MORE PEOPLE INVOLVED. SO WE APPRECIATE THEIR PARTICIPATION. >> JOSHUA GORDON: JUST HAVE BEEN INFORMED OUR FINAL ORAL COMMENTER IS HERE. MARGARET. AND WHY DON'T YOU GO AHEAD AND TAKE THE PODIUM AND YOU WILL HAVE 5 MINUTES FOR YOUR COMMENTS. >> HELLO. IT WAS A LOT OF FUN GETTING HERE. SORRY I'M LATE. THERE WAS A LOT OF CIRCLING AND LEAVING AND COMING BACK. SO, THANK YOU FOR BEING PATIENT WITH ME. PART OF ME BEING HERE IS TO SHARE MY PERSPECTIVE AS A PARENT AND SOMEONE WHO HAS A CHILD IN THE PUBLIC SCHOOL SYSTEM WHERE PART OF THE PROBLEM THAT I HAVE NOTICED -- I'M NOT A SCIENTIST OR ANYTHING, BUT I HAVE DEDICATED 12 YEARS OF MY LIFE -- SHE 12, TO TRYING TO UNDERSTAND THIS AND EDUCATE AND MENTOR AND REALLY ADVOCATE FOR THE CAUSE. PART OF THE ISSUE I ENCOUNTERED IS THAT WE DON'T HAVE A FUNCTIONAL ACADEMIC CURRICULUM FOR OUR AUTISTIC KIDS. AND IN THE PUBLIC SCHOOL SYSTEM, THERE REALLY ISN'T A WAY TO IDENTIFY THE LEVELS IN WHICH CHILDREN ARE FUNCTIONING AT AND WE NEED TO BE ABLE TO FIND A WAY TO PULL THAT INFORMATION FROM ALL THE SPECIALISTS AND THE TEACHERS AND ALL OF THESE TESTS THAT THEY HAVE OUR KIDS DOING AND BE ABLE TO TRY TO COME UP WITH A WAY TO EDUCATE OUR KIDS. MY STORY DEALS WITH MY CHILD ESSENTIALLY LOST A YEAR OF INSTRUCTIONAL LEARNING BECAUSE HIS TEACHER DIDN'T KNOW HOW TO TEACH HIM. DIDN'T KNOW HOW TO PROGRESS HIM ACADEMICALLY AND PART OF THE PROBLEM IS BECAUSE THE STATE OF VIRGINIA WHERE I LIVE, DOES NOT HAVE AN ACTUAL FUNCTIONAL ACADEMIC CURRICULUM. THEY HAVE SOMETHING CALLED THE SO R AND THEN THEY HAVE THESE SUB-CATEGORIES FOR WHAT THEY TEACH THAT STILL GOES WITH THE SOL. BUT THE TEACHERS ALSO RESPONSIBLE FOR COMING UP WITH THEIR OWN CURRICULUM THAT COINCIDES WITH THE SOL. AND SOMETIMES THESE TEACHERS DON'T KNOW WHAT TO DO. AND THEY DON'T HAVE THE TOOLS OR TEMPLATES TO REALLY EDUCATE OUR KIDS AND BE ABLE TO PUT THEM ON A PATH TO SUCCESS. AND SO, THERE IS A LOT OF INCONSISTENCY IN THE PUBLIC SCHOOL SYSTEM REGARDING HOW OUR KIDS ARE EDUCATED. FOR SOME OF US, WHERE I LIVE IN VIRGINIA, UNFORTUNATELY, SOME RESOURCES ARE NOT AVAILABLE BECAUSE OF WHERE WE ARE. WE DON'T HAVE CENTERS. WE DON'T HAVE SAY PLACE WHERE TEACHERS CAN ACTUALLY ALCOHOL TOGETHER AND BE ABLE TO TRY TO COME UP WITH A WAY TO INSTRUCT THE KIDS. SO, IT'S BEEN VERY DIFFICULT FOR NOT ONLY MYSELF YOU GO FOR OTHER PEOPLE I'M SURE, IN TRYING TO ENSURE THE SERVICES ARE ADMINISTERED FAIRLY AND PROPERLY AND THAT THEY MEET THE NEEDS OF OUR KIDS. AND SOMETIMES YOU HAVE THESE TEACHERS THAT ARE JUST SO BURNT-OUT THAT THEY REALLY DON'T HAVE THE ENERGY OR THE DRIVE TO STAY DEDICATED TO THE CAUSE THAT THEY WENT INTO TO BEGIN WITH. SO, ANOTHER THING ALSO IS TECHNOLOGY. I DO SEE THE BENEFITS OF HAVING MORE TECHNOLOGY IN A CLASSROOM WITH KIDS THAT HAVE AUTISM. AND MY SON IS A TECHNOLOGY GUY. HE IS A COMPUTER FREAK. HE CAN NAVIGATE THROUGH ANYTHING ON THE COMPUTER IN HE WANTS TO. AND THAT IS A WONDERFUL THING. AND THAT'S SOMETHING I ENCOURAGE AT HOME BUT NOT ALWAYS THE SAME THING AT THE SCHOOL SYSTEM. SO THEY GIVE HIM A TABLET YOU PLAY WITH BUT THERE ISN'T ANYTHING THAT THEY MAY BE LEARNING. AND I KNOW THERE IS SAY LOT OF TOOLS AND SAY LOT OF RESOURCES OUT THERE FOR THEM TO USE, BUT UNFORTUNATELY, DO I FIND THAT THE LEVEL OF EDUCATION IN THE PUBLIC SCHOOL SYSTEM IS VERY INCONSISTENT. I SHOULD BE ABLE TO TAKE MY KID TO ONE SCHOOL ON THIS PART OF THE COUNTY AND BE ABLE TO GET THE SAME TYPE OF EDUCATION IN ANOTHER PART -- ANOTHER SCHOOL IN A DIFFERENT PART OF THE COUNTY BUT THAT'S NOT THE CASE. IT'S BASED ON THE TEACHER AND THEIR ABILITY TO REALLY BE PATIENT TO LEARN, AND TO EDUCATE THEMSELVES AND THERE IS TRAINING IN ALL THESE THINGS AVAILABLE BUT A LOT OF IT IS NOT MANDATED OR REQUIRED. AND SO, I THINK THAT WE REALLY NEED TO -- I THINK THE GOVERNMENT NEEDS TO HELP MORE WITH TRYING TO COME UP WITH A WAY TO STANDARDIZE AUTISM AS A SERVICE AND SOMEHOW FIND A WAY, IF THERE ISN'T SOMETHING ALREADY, IN THE WORKS TO MAKE IT A SPECIALTY AMONG THE MEDICAL FIELD, AMONG THE TEACHERS, AND THE ACADEMIC FIELD AND WITHIN THAT COMMUNITY SO THAT WE CAN ALL TRY TO BUILD UPON WHAT WE ALREADY HAVE, WHAT WE KNOW, AND-OUR KIDS JUST TRANSITION EASILY TO HELP THEM LEARN AND GROW IN A DIFFERENT KIND OF WAY. MY KID, HE IS NOT REALLY LIKE MOST AUTISTIC KIDS, ARE NOT REALLY BIG ON HUMAN INTERACTION. BUT THE WAY THAT HE CAN LEARN AND INTERACT IS THROUGH THE COMPUTER OR THROUGH TECHNOLOGY. BECAUSE HE DOESN'T HAVE TO FIGURE OUT OTHER PEOPLE'S EMOTIONS AND BODY LANGUAGE AND THE ENERGY THEY ARE GIVING OFF. IT'S EASIER FOR HIM TO GET INSTRUCTION OFFER THE COMPUTER. I ASKED MY PUBLIC SCHOOL SYSTEM TO -- I HEARD OF NEILO AND I READ ABOUT IT, HEARD TESTIMONIES AND HEARD IT WAS GREAT AND A WONDERFUL THING AND I'M TELLING TEACHERS WHY DON'T WE HAVE THIS IN THE CLASS. >> MAYBE THIS CAN HELP FACILITATE LEARNING FOR THE KIDS THAT HAVE A HARD TIME DEALING WITH PEOPLE AND INTERACTING WITH THE TEACHERS OR OTHER STUDENTS. AND FUNDING IS ALWAYS THE PROBLEM. OR THEY JUST KIND OF DON'T HAVE INTEREST IN IT BECAUSE THEY DON'T KNOW THE TECHNOLOGY THEMSELVES. AND THEY ARE NOT WILLING TO LEARN. I TALKED TO THE DIRECTOR OF SPECIAL EDUCATION FOR MY SCHOOL DISTRICT, WHICH IS PRINCE WILLIAM COUNTY SCHOOLS, AND SOME PEOPLE KIND OF GET IT BUT A LOT OF THEM DON'T. AND AS SOMEONE THAT IS IN THE LEADERSHIP POSITION, I DON'T FEEL THAT THEY FULLY UNDERSTAND WHAT OUR KIDS NEED IN ORDER FOR THEM TO REALLY BE TAUGHT IN A LESS THAN CONVENTIONAL WAY. THAT'S WHY I'M HERE TO KIND OF SPREAD THAT OUT BECAUSE I HAVE GROWN TO BE VERY FRUSTRATED WITH THE FACT THAT MY TAX DOLLARS, 40% OF THEM, GO TO FUND THE SCHOOL SYSTEM BUT YET WE DON'T INDIVIDUAL ENOUGH TECHNOLOGY, ENOUGH RESOURCES AND TRAINING AND INFORMATION AVAILABLE FOR THESE PROFESSIONALS WHO ARE SUPPOSED TO BE CERTIFIED DEGREED AND EDUCATESSED ALL THROUGHOUT WHATEVER SPECIALTY THEY ARE IN, AND MY KID IS SITTING IN A CLASSROOM AND NOT BE TAUGHT ANYTHING AND THEN UNFORTUNATELY HE REGRESSED AS A RESULTED OF THAT. SO COMMUNICATION IS AN ISSUE. SOME TEACHERS DON'T COMMUNICATE VERY WELL SO WE NEED TO HAVE MORE OVERSIGHT IN THE PUBLIC SCHOOL SYSTEM. AND I DON'T THINK THAT WE CAN REALLY ALLOW THE STATES TO KIND OF FIGURE IT OUT FOR THEMSELVES. I THINK THAT THEY NEED TO HEAR FROM A HIGHER AUTHORITY. THAT THIS IS WHAT WE NEED TO DO FLORIDA TO MAKE SURE THAT WE HAVE A CERTAIN LEVEL OF CONSISTENCY ACROSS-THE-BOARD. BECAUSE IF I MOVE TO LIKE IOWA, MY KID PROBABLY HAS NO CHANCE THERE BECAUSE THERE IS CERTAIN THINGS THEY DON'T HAVE. SO WE NEED TO TRY ARE TO STANDARDIZE THINGS AS MUCH AS POSSIBLE, PULL DATA, PULL INFORMATION, AND COLLECT IT IN ONE OR SEVERAL PLACES SO IS THAT WE CAN TRY TO FIGURE OUT HOW ARE WE GOING TO TEACH THESE KIDS IN A PUBLIC SCHOOL SYSTEM. SO THAT'S PRETTY MUCH IT. >> JOSHUA GORDON: THANK YOU VERY MUCH. >> THANK YOU. [ APPLAUSE ] >> JOSHUA GORDON: WE ARE GLAD YOU MADE IT AND SORRY FOR THE INCONVENIENCE OF HAVING IT IN A DIFFICULT FLIES GET TO BUT WE APPRECIATE YOU COMING AND GIVING US SUCH CLEAR AND COMPELLING TESTIMONY. ARE THERE COMMENTS? DAVID? >> DAVID: SO, I WISH YOU HAD WRITTEN THE SERVICES CHAPTER FOR THE IACC SUPPORT BECAUSE I THINK SHE ELOQUENTLY HIT ON EXACTLY THE PROBLEMS WE ARE TRYING TO ADDRESS IN THAT CHAPTER. AND I JUST WANT TO REITERATE SOME THINGS THAT I THOUGHT WERE REALLY IMPORTANT. FIRST, AND THAT WERE SAID BY OTHER PRESENTERS AS WELL. THE COMPLETE INADEQUACY OF PRESERVES TRAINING. [ RINGING ] I'LL STOP NOW. [ LAUGHS ] THE COMPLETE INADEQUACY OF PRESERVES TRAINING AND WE HAVE -- PRESERVEIS TRAINING. WE WANT TO MAKE TEACHERS EXPERT IN WORKING WITH KIDS WITH AUTISM AND WHAT WE HAVE IS A MODEL IN WHICH THEY ARE ALLOWED TO DIP THEIR TOW IN THE WATER BEFORE THEY ARE THROWN INTO THE POOL TO WORK WITH THESE KIDS. LEADING TO TREMENDOUS AMOUNT OF BURNOUT WHICH WE FOUND THE TURN OVER RATE IN THE FILL DESTIA SCHOOL DISTRICT AMONG SPECIAL EDUCATION TEACHERS WORKING WITH KIDS WITH AUTISM IS 25% A YEAR. THAT THEY HAVE NO IN-SERVICE CONSULTATION OR SUPPORT. SO EVEN AS THEY FIND PROBLEMS -- NOTED ABLE TO IMPLEMENT WHAT THEY WANT TO IMPLEMENT SORE THE FIELD CHANGES, WE DON'T HAVE A GOOD WAY OTHER THAN TO AS WE LIKE TO CALL, TRAIN AND PRAY. WE SEND THEM FOR ONE DAY WORKSHOP ON SOMETHINGS THAT WE WANT THEM TO BELIEVE EXPERT IN AND WE SEND THEM BACK TO THE CLASSROOM. THERE ARE A PAN PLEA OF PROGRAMS NA WE AS A COMMUNITY HAVE NOT THAT SHOULD BE IN EVERY CLASSROOM. AND AS A RESULT, WE HAVE WAREHOUSES FILLED WELL CURRICULUM AND PROGRAMS THAT SOMEBODY THOUGHT WERE A GOOD IDEA LAST YEAR BECAUSE THEY GOT A FLYER ABOUT IT OR WENT TO A TRAINING THAT ARE NO LONGER BEING USED. SO WE WASTED A TREMENDOUS AMOUNT OF MONEY AND THIS IS PARTICULARLY TRUE IN DISTRICTS THAT ARE UNDER RESOURCED PRIMARILY BECAUSE EDUCATION FUNDING IS TIED TO PROPERTY TAXES BECAUSE CONGRESS HAS NEVER FULLY APPROPRIATED ALL THE FUNDS FOR SPECIAL EDUCATION THAT THEY SAID THEY WOULD, PROBABLE BE17 BE17-19%. AND THIS IS DRIVINGS A LOT OF THE DISPARITIES WE SAY WE WANT TO ADDRESS IN OUR STRATEGIC PLAN. AND WE SHOULD KEEP IN MIND THAT WHEN WE ARE TALKINGS ABOUT RACE, WE ARE OFTEN TALKING ABOUT PLACE. WHEN IT COMES TO THESE KINDS OF DISPARITIES. SO, I WOULD LOVE TO MAKE SURE THAT EVERYTHING ABOUT THAT, THAT HAS BEEN SAID TODAY, IS REALLY FOREMOST IN OUR MIND AS WE THINK ABOUT WHAT THE RESEARCH AGENDA SHOULD BE AND WHAT THE PRACTICE AGENDA SHOULD BE TO -- WE ALREADY KNOW A LOT OF THINGS WE SHOULDN'T BE DOING AND WE ARE NOT DOING THEM. SO WE CAN DO ALL THE RESEARCH WE WANT BUT IF IT DOESN'T MAKE IT INTO PRACTICE AND IF WE HAVEN'T DEVELOPED A POLICY SYSTEM AND A SERVICE SYSTEM THAT ALLOWS THAT TO HAPPEN, THEN THE RESEARCH ISN'T GOOD FOR ANYTHING. >> JOSHUA GORDON: THANK YOU, DAVID. ARE THERE OTHER COMMENTS ABOUT THE ORAL COMMENTER OR ANY OF THE OTHER COMMENTERS OR WRITTEN COMMENTS? THANK YOU VERY MUCH. AND THANKS TO ALL THE COMMENTERS, ORAL AND WRITTEN FOR THOSE OF YOU HERE. AND FOR THOSE OF YOU WHO ARE LISTENING IN, WE REALLY APPRECIATE IT AND APOLOGIZE IF WE DON'T GET TO DISCUSS EVERY SINGLE ONE. BUT WE DO LOOK AT THEM AND WE DO -- I MYSE LF HAVE MARKED SEVERAL OF THESE THAT I WANT DO FOLLOW-UP ON IN TERMS OF TRYING TO FIGURE OUT WHETHER WE SHOULD INCLUDE THEM IN THE NIMH RESEARCH AGENDA. I ASSURE YOU EVEN IF WE DIDN'T GET A CHANCE TO DISCUSS THEM INDIVIDUALLY TODAY, WE DO CNSIDER THEM IMPORTANT. SO, WE'LL GO AHEAD AND MOVE ON TO THE NEXT ITEM ON OUR AGENDA WHICH IS DISCUSSION OF AUTISM AFTER 21. AND TO LEAD US OFF IN THAT WE WILL HAVE A PRESENTATION BY THE MADISON HOUSE AUTISM FOUNDATION AND I WELCOME JALYNN PRINCE. ADRIENNE McBRIDE AND DESIREE KAMEKA. THERE YOU GO. THEY ARE GOING TO HAVE A PRESENTATION AND AFTERWARDS WE'LL HAVE TIME TO DISCUSS. >> JALYNN PRINCE: THANK YOU VERY MUCH FOR THE INVITATION TO BE HERE. WE ARE GRATEFUL TO THE FINE LEADERSHIP WE HAVE BEEN SEEING WITH IACC AND I'M VERY IMPRESSED WITH THE NUMBER OF PEOPLE THAT I HAD THE OPPORTUNITY TO GET TO KNOW THAT ARE SITTING AROUND THIS TABLE. WE WANTED TO TELL YOU A LITTLE BIT ABOUT WHAT WE HAVE BEEN DOING FOR THE LAST SEVERAL YEARS. WE STARTED MADISON HOUSE OFFICIALLY 10 YEARS AGO THOUGH WE STARTED RESEARCH 13 YEARS AGO. MY HUSBAND WAS A RESEARCH SCIENTIST AND I HAD A BACKGROUND IN MANY DIFFERENT THINGS, AND PR AND SCIENCE AND BROADCASTING AND IN THE ARTS. AND WE DECIDED THAT WE WANTED TO MOVE FORWARD TO DO SOMETHING IN THE FIELD OF AUTISM. AND AS WE MOVED FORWARD, WE DID A MARKETING SURVEY AND AS WE DID OUR RESEARCH, LOCALLY AND STATEWIDE AND NATIONALLY, WE SAW THAT THERE WAS A GREAT NEED IN THE ADULT ARENA. AND IN FACT, THE SPACE WAS WIDE OPEN. FOR GOOD OR FOR ILL. AND WE WANT TO TALK TO YOU A LITTLE BIT ABOUT WHAT WE HAVE BEEN DOING OVER THE LAST WHILE. LET ME TELL YOU A BRIEF STORY ABOUT WHY WE ARE IN THIS. THIS ILLUSTRATES SOMETHING. WE WERE ON OUR WAY TO A FAMILY EVENT. WE HAD DONE A NOSE COUNT OF HOW MANY PEOPLE WERE GOING TO BE THERE, HOW MANY ADULTS AND HOW MANY CHILDREN. MY HUSBAND DIDN'T REALIZE THAT WE HAD THE NOSE COUNT AND SINCE WE WERE IN OUR VAN, AS MANY PEOPLE DO GOING ON TO A FAMILY FUNCTION, HE WAS SAYING, DO WE HAVEIT RIGHT COUNT? DO WE HAVE MADISON. I SAID, MADISON DOESN'T COUNT THINKING THAT HE HAD ALREADY BEEN ACCOUNTED FOR. A MOMENT LATER, WE HEARD A LITTLE VOICE IN THE BACK SEAT SAYING, 1, 2, 3, 4, 5. MADISON COUNTS. YES, MADISON COUNTED AT THE AGE OF 11 AS HE MADE THAT STATEMENT. HE IS NOW 27 YEARS OF AGE AND HE STILL COUNTS. HE WAS OFTEN THE TITLE WAVE OR THE TSUNAMI OF AUTISM. AND HE HAS BEEN ABLE TO BENEFIT FROM A NUMBER OF THINGS BUT WE ARE SEEING THAT IN THE ADULT ARENA, THERE ARE FEW THINGS THAT EXIST TO HELP MADISON AND THE MANY OTHER MADISONS AROUND THE COUNTRY. MADISON HOUSE AUTISM FOUNDATION IS NOT A GOVERNMENT-FUNDED ORGANIZATION. IT IS NOT PART OF A UNIVERSITY. AND WE ARE NOT PROVIDERS. ALTHOUGH WE WORK WITH EACH ONE OF THESE ENTITIES. WE STARTED THE FOUNDATION BUT NOW IT IS TIME FOR THIS FOUNDATION AND THE WORK THAT IT IS DOING TO BE TAKEN OVER BY THE REST OF THE COUNTRY TO DO VERY IMPORTANT THINGS IN EVERY COMMUNITY IN THIS NATION. ONE OF THE THINGS WE HADATOID WITH IN THE VERY BEGINNING, WAS TO HAVE A ROUNDTABLE, AND I BRING THIS UP BECAUSE URN TALKING ABOUT SOMETHING OF A SIMILAR NATURE. ONE OF OUR ORIGINAL GOALS HAD BEEN TO HAVE THE FINANCING TO PULL TOGETHER VOICES FROM AROUND THE COUNTRY, BOTH IN GOVERNMENT, THE PRIVATE INDUSTRY AND UNIVERSITIES, TO PUT OUT A PLAN FOR AUTISM AND ESPECIALLY FOR THE PORTION OF AUTISM THAT TAKES UP AS SOMEONE WISELY SAID, THREE-FOURTHS OF ONE'S LIFE. LET ME GIVE YOU AN IDEA OF WHAT MADISON HOUSE HAS BEEN DOING. WE HAVE A FEW VIDEOS HERE FOR YOU AND LET'S STARTED WITH THIS. >> IT CAN BE DIFFICULT TO NOTICE SOMETHING IN PLAIN SIGHT. IN THE UNITED STATES, A CHILD WITH AUTISM BECOMES AN ADULT WITH AUTISM EVERY 10 MINUTES. AUTISM IS A LIFELONG DEVELOPMENTAL DISABILITY THAT ALTERS THE WAY ONE PERCEIVES AND INTERACTS WITH AND RELATES TO THE WORLD AROUND THEM. PROVIDED WITH THE RIGHT TOOLS, INDIVIDUALS WITH AUTISM LEARN HOW TO OPERATE AND SUCCEED IN AN OTHERWISE CONFUSINGS ENVIRONMENT. BUT AT AGE 21, OUR FRIENDS LOSE ACCESS TO THE SUPPORTS THAT HELP THEM NAVIGATE AND MAKE SENSE OF THEIR WORLD. THIS YEAR ALONE, 50,000 CHILDREN WITH AUTISM WILL TRANSITION INTO ADULTHOOD. THAT'S ENOUGH PEOPLE TO FILL OVER 900 SCHOOL BUSES, 18 CARNEGIE HALLS, 15 TITANIC SHIPS OR THE ENTIRE DODGERS STADIUM. ADD THIS TO THE EXISTING COMMUNITY OF AUTISTIC ADULTS AND IT WOULD REPLACE THE ENTIRE POPULATION OF CHICAGO OR THE ENTIRE STATE OF KANSAS. AND IT HAS A DIRECT IMPACT ON MILLIONS MORE. DUE TO INSUFFICIENT SOCIAL SUPPORT THESE ADULTS FACE INADEQUATE HOUSING, EMPLOYMENT, HEALTH CARE, EDUCATION AND COMMUNITY. THEIR LIVES OFTEN GO UNNOTICED AND NEGLECTED WHICH PRODUCES AN ANNUAL 300 BILLION DOLLAR ECONOMIC BURDEN AND ROBS US ALL OF THE VALUE OUR FRIENDS HAVE TO ADD. THAT IS WHY MADISON HOUSE AUTISM FOUNDATION NEEDS YOUR HELP. WE WORK TIRELESSLY TO RAISE THE VISIBILITY OF ADULTS ON THE SPECTRUM AND THE LIFESPAN CHALLENGES THEY FACE. FACILITATE EXPANSION OF OPPORTUNITIES OF HOUSING, EMENT, EDUCATION AND ADEQUATE HEALTH CARE. IN COMMUNITIES ACROSS THE COUNTRY. THESE VALUABE ADULTS HAVE GONE UNNOTICED FOR TOO LONG AND THE CLOCK IS TICKING. JOIN MADISON HOUSE AUTISM FOUNDATION TODAY AND DISCOVER HOW YOU CAN LEARN MORE, GIVE SUPPORT, AND TAKE ACTION TO ENSURE BRIGHTER FUTURE FOR OUR FRIENDS WITH AUTISM. >> THAT DESCRIBES IN A NUTSHELL THE THINGS THAT WE ARE WORKING ON. WE HAVE -- GOING TO THE NEXT SLIDE. THIS WENT IN A DIFFERENT DIRECTION. PART OF THOSE STATISTICS WE READ IN THAT PARTICULAR VIDEO. IN THE DARKER PORTION THERE, I WANT TO YOU LOOK AT THE LAST LINE. THERE IS SOMETHING THAT MY HUSBAND FOUND IN HIS RESEARCH IN LOOKING AT SOME WORK THAT HAD BEEN DONE AT THE UNIVERSITY DAVIS -- U.S. DAVIS MEDICAL SCHOOL IN CALIFORNIA. LOOK AT THE NUMBER ON THAT. EACH YEAR BY THE COST FOR DIRECT SERVICES AND INDIRECT SERVICE AND IT IS LACK OF PRODUCTIVITY, IT COSTS OUR NATION $300 BILLION. THAT IS A STAGGERING SUM. AND THEY ESTIMATE THAT BY 200025, THAT THAT WILL ALMOST DOUBLE. CAN WE AFFORD NOT TO DO THINGS? WE ARE HOPING THAT ORGANIZATIONS LIKE OURS AND OTHER NOT FOR PROFITS AND THE GOVERNMENT AND PRIVATE INDUSTRY CAN COME TOGETHER TO EXAMINE WHAT WE CAN DO TO REDUCE THAT COST TO OUR COUNTRY. THIS LAPSE TO BE INFORMATION FROM IACC AND WE SEE -- HAPPENS TO BE -- THERE IS 2% OF THE RESEARCH DOLLARS THAT GO TOWARDS ADULTS. AGAIN, REMEMBER THAT THREE-QUARTERS OF ONE'S LIFE IS SPENT IN ADULTHOOD. I THINK THOSE STATISTICS ARE PROBLEMATIC. WE HAVE COME A LONG WAY WITH EXPECTATIONS FOCUSING ON PERSON-CENTERED PLANNING AND MOVING AWAY FROM INSTITUTIONALIZING INDIVIDUALS OR INSTITUTIONAL PROGRAMS FOR INDIVIDUALS. BUT TO MAKE CERTAIN PEOPLE CAN BE INVOLVED IN COMMUNITY. MADISON HOUSE IDENTIFIED AREAS THAT YOU SAW ON THAT VIDEO. WE SEEN THAT THERE IS -- AND WE HAD THESE FOUR THINGS. THERE ARE SO MANY THINGS WE COULD BE WORKING ON. THESE ARE FOUR CORE THINGS. THE LACK OF APPROPRIATE AND AFFORDABLE HOUSING SO PEOPLE HAVE VARIOUS OPTIONS AND THAT THEY CAN HAVE THE SUPPORTS AND COMMUNITIES THAT THEY DESIRE. WE SEE THAT THERE IS EXCESSIVE UNEMPLOYMENT AND IT IS ESTIMATE ED BY 80% UNDER EMPLOYMENT. WE ALSO SEEN TOO, THAT WE HAVE NEEDED MORE UNIVERSITY PROGRAMS AND MORE VOCATIONAL PROGRAMS. ONE OF THE THINGS THAT WE STARTED VERY EARLY ON WAS A CONVERSATION WITH THE UNIVERSITY THAT HAD HAD THE CHALLENGE TO GROW. AND IN APRIL, WE WERE FORCE NAT ENOUGH TO HAVE THE RIBBON CUTTING FOR A NEW PLACE OF LEARNING THAT CAN HELP THOSE NAVIGATE COLLEGE THAT ARE COLLEGE BOUND SO THEY CAN HAVE A SUCCESSFUL EXPERIENCE AND MOVE ON HOPEFULLY FOR EMPLOYMENT. MANY OF THESE THINGS ARE PLAN THAT IS NEED TO BE PUT INTO PLAY MANY YEARS BEFORE THEY ARE REALIZED. AND WE HAVE ALSO SEEN THAT THERE IS A LACK OF MEDICAL CARE. NOW I'M NOT SAYING NECESSARILY TREATING AUTISM ITSELF, NOT NECESSARILY THE GUT ISSUES OR DIFFERENT TYPES OF THINGS. THOSE ARE ALL IMPORTANT. BUT WE HAVE VERY FEW POSITION PHYSICIANS TRAINED TO WORK WITH INDIVIDUALS ON THE SPECTRUM FOR TYPICAL MEDICAL SITUATIONS. THERE ARE WAYS AND MEANS. WE HAD A MEMBER OF OUR BOARD PUT TOGETHER A WONDERFUL VIDEO ABOUT HOW YOU CAN HAVE EFFECTIVE ENCOUNTERS WITH PHYSICIANS AND THAT INDIVIDUALS ON THE SPECTRUM AND OTHERS, AND FEEL COMFORTABLE WHEN GOING BACK TO PHYSICIANS. IS THAT GOING TO ELIMINATE SOME OF THE COSTS WE HAVE IN SOCIETY IF WE HAVE PEOPLE THAT ARE HEALTHY? AND THAT WE HAVE APPROPRIATE MEDICAL CARE. THIS IS SOMETHING THAT STILL ABSOLUTELY ASTOUNDS US. MANY OF US HEARD THIS PHRASE BEFORE. AUTISTIC CHILDREN GROW UP TO BECOME AUTISTIC ADULTS. THERE IS NOT A WEEK THAT GOES PAST THAT I DON'T ENCOUNTER SOMEONE THAT IS A VERY WELL INFORMED INDIVIDUAL IN THE COMMUNITY THAT SAYS, I NEVER HAVE GIVEN IT ANY THOUGHT. I HAD NO IDEA THERE WERE AUTISTIC ADULTS. I HEARD A LOT ABOUT CHILDREN BEING HELPED. BUT WHAT ABOUT ADULTS? IT'S ASTOUNDING TO ME THE LACK OF AWARENESS -- I HATE TO USE THAT TERM, BECAUSE THE THING THAT WE ARE VERY INTERESTED IN IS BRINGING A CONSCIOUSNESS ABOUT HAVING THESE INDIVIDUALS IN OUR COMMUNITY. BUT HOW IN THE WORLD CAN WE CREATE SOLUTIONS IF PEOPLE HAVE NO IDEA THAT THERE IS A NEED OR THAT THERE IS PEOPLE THAT EXISTS THAT NEED HELP? WE HAVE SELECTED THE WORD, CONSCIOUSNESS. BECAUSE WE HAVE FELT THAT WE NEEDED IN SOME WAYS, TO STEP BACKWARDS A LITTLE BIT BECAUSE WE HAVE BEEN PROCEEDING WITH OUR WORK. BUT WHEN WE FIND THAT CORPORATIONS AND INDIVIDUALS DON'T KNOW THAT WE HAVE ADULTS ON THE SPECTRUM, HOW CAN WE EXPECT THEIR PARTICIPATION? SO, SOMETHING THAT WILL BE EXPLAINING IN A MOMENT WILL SEEM LIKE A VERY SIMPLISTIC APPROACH BUT I HOPE IT WILL BE A KEY TO SOMETHING VERY IMPORTANT. WE HAVE COME UP WITH SOMETHING CALLED, AUTISM AFTER 21 DAYS. AND WE ARE GOING INTO OUR THIRD YEAR WITH THIS. WE WANT TO CHALLENGE THE NATION THAT DURING THE MONTH OF APRIL, ON THE 21st, IT SIGNIFIES THE TIME WHEN MOST SERVICES END FOR MOST ADULTS, SOMETIMES IT DOES FOR AGE 18 IN SOME STATES AND SOME SITUATIONS. THAT WE CAN BRING TO THE CONSCIOUSNESS OF COMMUNITIES AROUND THE COUNTRY AN UNDERSTANDING THAT WE HAVE INDIVIDUALS THAT CAN CONTRIBUTE TO OUR NATION TO, OUR COMMUNITIES. WE TRY TO EMPHASIZE THE TALENTS, ABILITIES AND YES, THE CHALLENGES BECAUSE THEY ALL GO TOGETHER. AUTISM AFTER 21 DAY HAS BEEN A VERY INTERESTING THING TO BE WORKING WITH AND WE HAVE HAD SOMETHING THAT WE HAVE FELT HAS BEEN VERY SUCCESSFUL? A. I WANT TO GIVE YOU JUST AN OVERVIEW OF ONE OF THEM. THERE HAVE BEEN OTHER STATES THAT HAVE BEEN DOING THIS. WE ARE CHALLENGING PEOPLE IN EACH STATE TO GO TO THEIR LEGISLATORS TO HAVE AUTISM AFTER 21 DAY DECLARED. THAT SOUNDS LIKE A SIMPLE THING AND MAYBE A RATHER FLUFFY THING TO DO. BUTO CONTRAIR. IF WE CAN STEP INTO THE HALLS OF GOVERNMENT ON A NONPARTISAN BASIS AND CHALLENGE PEOPLE TO COME TOGETHERS TO MAKE A DECLARATION, YES WE WANT TO HELP& ADULTS ON THE AUTISM SPECTRUM, WADOES THAT MEAN DURING THE REST OF THE YEAR WHEN WE DO HAVE ISSUES AND WE FEED TO GO TO OUR LEGISLATORS. WE NEED TO GO TO PEOPLE WITHIN OUR COUNTIES OR PEOPLE WITHIN OUR CITIES TO HAVE SOLUTIONS WHETHER IT BE EDUCATIONAL, WHETHER IT BE ANY ONE OF THE NUMBER OF THINGS. SO THAT IS THE FIRST STEP. THIS IS WHERE -- THIS IS SAY PICTURE OF US WHEN WESTERN WITH THE COUNTY COUNCIL HERE IN MONTGOMERY COUNTY. JUST PRIOR TO DOING AN EVENT. THIS WAS A BREAKFAST WE HAD FOR 200 BUSINESS LEADERS AND INDIVIDUALS AND PARENTS. AND WE BROUGHT TOGETHER OUR CONGRESSMEN, OUR COUNTY COUNCIL LEADERS, BUSINESS PEOPLE, PARENTS. WE HAD THE SECRETARY OF LABOR THERE. WE HAD DICK SPEAKING. WE HAD DAVE PATRON, A BUSINESS LEADERS WHO EMPLOYS INDIVIDUALS ON THE SPECTRUM. WE HAD PEOPLE FROM THE MEDIA. IT WAS AMAZING TO SEE THE RESPONSE AND TO GET THE FEEDBACK GOING IN AND COMING OUT OF THAT BREAKFAST. WE HAVE A LOT OF VERY INTERESTING THINGS THAT HAVE COME ABOUT AS A RESULT OF THAT. AND WE KNOW IT CAN WORK IN COMMUNITIES ACROSS THE COUNTRY AGAIN TO INCREASE THE CONSCIOUSNESS. WE ALSO HAD A YOUNG MAN PLAYING THE PIANO THERE WHO WAS ON THE SPECTRUM AND HE ALSO WORKS FOR A PIANO COMPANY. WE HAD 21 WORKS OF ART DONE BY PEOPLE FROM AROUND THE COUNTRY. NOT ONLY DID THEY REPRESENT THEMSELVES AND THEIR ART WORK, BUT THEY REPRESENTED MANY OTHERS BECAUSE THERE WAS A VISUAL CONNECT OF THE ABILITIES OF MANY INDIVIDUALS ON THE SPECTRUM. THERE IS SOMETHING THAT WE HAVE INCLUDED WITH THIS THAT WE MADE AVAILABLE TO VARIOUS STATES AND THESE THINGS ARE MADE AVAILABLE TO YOU RIGHT NOW. THESE ARE MINIDOCUMENTARIES ABOUT INDIVIDUALS THAT ARE ON THE SPECTRUM AND I WOULD LIKE TO PLAY ONE RIGHT NOW. WE HAD TWO -- THIS IS DAVID, A CARTOONIST. VERY INTERESTING YOUNG FELLOW. [ APPLAUSE ] [ SINGING ] LET ME INTRODUCE MYSELF. I'M A CARTOONIST. >> DAVID IS VERY CREATIVE. HE IS A JOY AND IT'S CARTOONING. >> I'M THE AN MERITED OF IN ZANY TOONS. >> HE HAS A GREAT SENSE OF HUMOR. HE SAY WORD SMITH. WE CALL HIM THAT ALL THE TIME. >> CRAZY TOONS OFFICIALLY NAMED TO ZANY TOONS AND YOU PUT THE WORD INSANE IN ZANY. >> HE IS CARING WHEN HE'S NOT ANXIOUS BUT HE HAS A LOT OF ANXIETY AND MAKES IT HARD FOR HIM TO FIND GOOD FRIENDS, PEOPLE THAT STICK AROUND, THAT AREN'T ME, HIS DAD, HIS SISTER AND HIS NIECE. >> I'LL SHOW YOU MY ROOM. THIS IS -- >> ONCE HE HIT 18 OR 19, IT WAS THE BEST OF TIMES AND WORST OF TIMES BECAUSE YOU'RE PROUD OF THE FACT THAT YOUR CHILD ARTICULATED AS FAR AS GETTING THROUGH THIS SYSTEM AND MAKING FRIENDS AND YOU WATCH THEIR GROWTH THROUGHOUT THOSE YEARS. BUT YET STILL YOU'RE A NERVOUS WRECK BECAUSE ONCE YOU HIT 21, YOU EXIT OUT MOST PROGRAMS. >> I REMEMBER JUST KIND OF STARTED TO FEEL THAT WEIGHT OF LIKE, NOBODY IS GOING IT HELP YOU DO THIS ANYMORE. THERE IS NOTHING THERE. NOTHING IN PLACE. IF THERE IS GOING TO BE ANY STRUCTURE IN HIS LIFE, IF THERE IS GOING TO BE PROTECTION OR GROWTH, YOU'RE GOING TO HAVE TO BE THE CATALYST FOR EVERYTHING THAT HAPPENS TO DAVID FROM NOW UNTIL DEATH. BUT WE ARE NOT GETTING TO BE HERE ONE DAY. WHERE IS THAT TEAM? WHO GOING TO BE DOING THAT FOR THEM? I DON'T KNOW IF YOU CAN PAY SOMEBODY TO THINK ABOUT THE THINGS THAT WE THINK ABOUT. >> ARE YOU READY TO START CIRCLE TIME WITH ME? >> I DO WORRY ABOUT WHAT PEOPLE SEE. WHETHER THEY SEE MY SON. >> DAVID, CARTOONIST, IF YOU WANT TO DRAW -- >> DAVID IS OUT ON THE STREET HE STARTS TO HAVE A BIG MELT DOWN. BUT HE IS NEAT AND CLEAN AND HIS SOCKS MATCH. SOMEBODY MIGHT STOP AND SAY WAIT A MINUTE, HE LOOKS LIKE SOMEBODY CARES ABOUT HIM. I SEE MY DAVID. SHE PRECIOUS. BUT I WORRY THAT PEOPLE WILL JUST SEE A BIG BLACK MAN HAVING A DRUGGED OUTFIT IN THE STREET AND THEY'LL BE AFRAID OF HIM. >> YOU DON'T WANT TO BE LOCKED IN THE HOUSE ALL DAY. YOU WANT TO HAVE INDEPENDENCE BUT HAVE YOU THOUGHTS IN THE BACK OF YOUR MIND THAT LET'S SAY THE MEDICINE ISN'T WORKING THAT WELL THAT DAY AND SOMEONE FEELS THREATENED. HE WOULDN'T HURT A FLY BUT WHEN HE WAS HERE'S IN A MELT DOWN, IT'S A PSYCHOSIS. THOSE TYPES OF INCIDENCES CAN HAVE DRAFTICT CONSEQUENCES. >> IF I CAN'T BE THERE TO STOP THE MELTDOWNS BEFORE THEY GET OUT OF HAND, I WORRY THAT THEY WON'T SEE DAVID. AND THAT IS WHY I AM THERE OR TONY IS THERE. IT'S TIRING. IT'S TIRING. I WORK AT NIGHT. TONY WORKS IN THE DAY. I JUST SAID TO HIM THIS MORNING, I LOVE TO SPEND SOME TIME WITH YOU. YOU KNOW? WE LOSE OURSELVES SOMETIMES A LITTLE BIT. [ MUSIC PLAYING ] WHEN I FOR THE READ ABOUT NORTH STREET, I WAS LIKE WOW, SOMETHING LIKE THIS ACTUALLY EXISTS WHERE FAMILIES COME TOGETHER WHO HAVE ADULTS WITH DISABILITIES? AND THERE ARE PEOPLE WHO LIVE IN THAT COMMUNITY THAT JUST WANT TO BE THERE AS PART OF THE SUPPORT FOR THESE FAMILIES. IT JUST REPRESENTS HOPE. >> HI, DAVID! >> HELLO AMY. >> EVERYONE REALIZE THAT IS YOUR NORMAL IS NOT THE AVERAGE NORMAL. SAY ONE OF THE RESIDENTS HAVING A BAD DAY, EVERYONE UNDERSTANDS. YOU DON'T HAVE TO EXPLAIN ANYTHING TO ANYBODY. WE ARE GOING TO HAVE A POT LUCK ON FRIDAY. EVERYONE COMES TOGETHER AND BRINGS SOMETHING. WE ARE GOING TO HAVE TACO TUESDAY NIGHT. THAT'S JUST A COMMUNITY. THAT TAKES A LOAD OFF. >> I THINK OUR HOPEFULNESS, OUR FAITH IS WHAT HAS GIVEN US THE STRENGTH AND THE ABILITY TO LOOK AT WHAT WE HAVE AND THINK THAT THERE IS SAY GREAT PURPOSE. I WANT DAVID TO FIND REAL PEACE. I WANT YOU TO KNOW YOU'RE SAFE, DAVID. I WANT YOU TO KNOW THAT YOU ARE LOVED EVEN IF YOU CAN'T SEE ME AND DAD AND WE ARE NOT HERE, THAT YOU ARE DOING LIFE THE WAY YOU WANT TO DO IT. WHAT DO YOU HOPE FOR YOURSELF? >> TO BE VERY POPULAR. [ LAUGHS ] HOLLYWOOD. GO TO JAPAN. >> I THINK YOU'RE GOOD ENOUGH TO DO THAT. WE JUST HAVE TO TEACH YOU HOW TO BE FRIENDS AND HOW TO STAY CALM. >> CARTOONS. >> I THINK YOU CAN HAVE THAT. [ MUSIC PLAYING ] >> JALYNN PRINCE: WE HAVE ONE OTHER VIDEO THAT I WOULD LIKE TO SHOW YOU. I THINK THERE IS A LOT OF IMPACT WITH THAT AND MAY I REMIND YOU TOO THAT WELL OVER A MILLION FAMILIES HAVE INDIVIDUALS WITH IDG AND AUTISM LIVING WITH CAREGIVERS OVER THE AGE OF 60. -- IDD. LET'S GO TO OUR NEXT ONE. THIS NEXT INDIVIDUAL IS SOMEONE WHO IS WORKING ON A FARM THAT HAS BEEN PARTIALLY GIFTED TO OUR FOUNDATION HERE IN THE MARYLAND COUNTRYSIDE. AND WE ARE OFFERING JOB TRAINING FOR INDIVIDUALS ON THE SPECTRUM AND AGRICULTURAL ENDEAVORS. THIS IS ADAM AJ JONES. >> HORSES HAVE BEEN MY LIFE FOR THE PAST 12 YEARS. I WOULDN'T WANT TO DO ANYTHING ELSE. IT'S ALLOWED ME TO LOOK INSIDE MYSELF AND SAY TO MYSELF, HEY, ADAM, IF YOU'RE ABLE TO HANDLE THESE HUGE ANIMALS, THERE IS NOTHING YOU CAN'T DO. I WAS DIAGNOSED WITH AUTISM IN 1987 WHEN I WAS ONLY THREE YEARS OLD. AS I GOT OLDER, I KIND OF TOOK THAT FEARFULFULLY AND IT SHOWED WHEN I WENT OUT IN SOCIETY. I REALLY FOUND IT HARD TO COMMUNICATE WITH OTHERS AROUND ME. >> HOW ARE YOU THIS MORNING? >> JUST TRYING TO GET THE HORSES FED AND KEEP EVERYTHING IN TIP-TOP SHAPE. >> ALL RIGHT. >> I FELT LIKE I WAS WAY DOWN AT THE BOTTOM OF THE TOTEM POLE BUT THEN 2004, WHEN I SAW THE MOVIE SEA BISCUIT, SUDDENLY A FIRE LIT IN MY MIND AND I SAID, THAT'S WHAT I CAN DO! WHENEVER YOU'RE INTRODUCED TO SOMETHING NEW, IT'S NERVE RACKING AT FIRST. IT'S FEAR OF THE UNKNOWN. BUT WITH THE COURAGE I HAVE GOTTEN THROUGH WORKING WITH HORSES, IT'S HELPED ME PUSH THROUGH ANY CHALLENGE THAT MAY COME MY WAY. WHEN MY FATHER DIED IN 2012, PART OF ME DIED. I WAS DEVASTATED. IT WAS REALLY HARD FOR ME TO EVEN GO OUT INTO THE WORLD. AFTER A WHILE, AND WITH OTHER PEOPLE'S ADVICE, THEY SHOWED ME, ADAM, YOU'RE NOT ALONE. YOU STILL IS HAVE YOUR MOM. YOU STILL HAVE YOUR STEP PARENTS. AND YOU STILL GOT THESE BEAUTIFUL ANIMALS TO BE ABLE TO HELP YOU IN TIMES LIKE THIS WHERE YOU CAN LAY YOUR HEAD ON THEIR SHOULDER AND THAT HAS BEEN REALLY, REALLY COMFORTING FOR ME. THIS JOB IS IMPACTED MY SELF-CONFIDENCE DRAMATICALLY. IT REALLY MOTIVATES ME TO GET OUT OF BED EVERY MORNING AND EARN A DECENT LIVING AND DO WHAT I LOVE AND PURSUE MY GOALS IN LIFE. MY ULTIMATE GOAL, MY DREAM S TO HEAPFULLY ONE DAY SHOW IN WASHINGTON INTERNATIONAL. >> IT'S A LITTLE EARLY FOR EASTER, DON'T YOU THINK? >> IN TERMS OF THIS FACILITY, IT'S JUST TO BE ABLE TO MAKE IT A MORE PLEASANT ENVIRONMENT. FOR ANYBODY WHO WALKS INTO THAT DOOR, AND FOR EVERYBODY WHO IS WORKING HERE. I THINK THAT MADISON FIELDS WANTS TO BE A PLACE OF HOPE FOR ADULTS WITH DISABILITIES AND NOT LET THEM BE LEFT OUT THERE IN THE WORLD AND SAY HEY, BECAUSE OF THIS, WE CAN'T GIVE YOU THAT CHANCE. NO. EVERYBODY DESERVES A CHANCE. IT'S VERY IMPORTANT, I THINK, IN SOCIETY THAT WE TRY TO LOOK A LITTLE MORE CLOSELY AND REALLY TAKE THE TIME TO KNOW THE INDIVIDUAL. >> IT MAKES ME WONDER WHY DO PEOPLE WANT TO MAKE THEIR INSTRUCTIONS MORE COMPLICATED THAN IT HAS TO BE? >> IF WE CAN JUST HAVE A BASIC UNDERSTANDING AS HOW TO COMMUNICATE, DEPENDING ON THE SEVERITY OF THE INDIVIDUAL'S DISABILITY, THEN THAT IS HOW MIRACLES CAN HAPPEN. I THINK THERE WILL BE A LOT OF OTHER ADULTS ON THE AUTISM SPECTRUM THAT WE WILL BE ABLE TO FIND WORK SO LONG AS IT IS DOING WHAT THEY REALLY LOVE TO DO. THAT IS WHEN THEY ARE REALLY PRODUCTIVE AND EFFECTIVE. I FEEL VERY PROUD TO BE SEEING MYSELF AS AN EXAMPLE AND SHOWING EVERYBODY THAT YOU KNOW, PEOPLE LIKE ME STAND A FIGHTING CHANCE IN THIS WORLD. IT'S HOPEFULLY ALLOW THEM TO SAY, HEY, THIS GUY KNOWS WHAT HE'S DOING. HE'S ON THE SPECTRUM AND HE'S BEEN ABLE TO HANDLE IT AND IF HE CAN, I CAN. MAD SOVEREIGN FIELD HELPED ME TO CONNECT MORE CLOSELY -- MADISON FIELD -- TO THE WORLD OUTSIDE AND INSIDE AS WELL. IT HELPED ME TO FIND MY TRUE SELF. >> JALYNN PRINCE: I WOULD LIKE 71 STAND FOR IN JUST A MOMENT. THERE IS A YOUNG MAN IN THIS LAST MOVIE RIGHT HERE. ADAM. [ APPLAUSE ] THANK YOU FOR SHARING YOUR STORY WITH US. THESE ARE THE TYPES OF STORIES THAT WE HAVE BEEN TALKING ABOUT AND SHARING ACROSS THE COUNTRY WITH AUTISM AFTER 21 DAY. TO MAKE PEOPLE REAL, TO TELL HONEST STORIES AND HAVE VOICES AND FAMILIES AND INDIVIDUALS AND THOSE IN THE COMMUNITY. AND WITH THIS ONE PARTICULAR PART OF OUR PRESENTATION, WE WOULD LIKE TO CALL ON EVERYONE TO HAVE SOMETHING OF THIS NATURE IN YOUR OWN STATE AND LOCATION THAT WE CAN HELP PROVIDE VARIOUS ASPECTS OF MEDIA FOR IT AND TO HAVE A BREAKFAST ON APRIL 21, TO START TO MAKE MORE PEOPLE CONSCIOUS OF THE TALENTS AND ABILITIES AND CHALLENGES FACING OUR POPULATION. THIS IS ONE GENTLEMAN FROM ANOTHER VIDEO. I WANT TO BREAK THE CONCEPTION THAT PEOPLE WITH AUTISM ARE UNABLE TO DO THINGS. THEY ARE JUST AS ABLE TO DO THINGS IN THEIR LIVES AS ANYONE ELSE. I'D NOW LIKE TO TURN THE TIME OVER TO DESIREE KAMEKA WHO IS OUR NATIONAL HOUSING COORDINATOR >> DESIREE KAMEKA: THANK YOU FOR HAVING US. I HAVE BEEN WORKING FOR THE MADISON HOUSE AUTISM FOUNDATION SINCE 2009 AND LEAD THREE HOUSING INITIATIVES. THE FIRST ONE IS AN AUTISM HOUSING PLATFORM. ON LINE PLATFORM WHERE PEOPLE CAN BRING TOGETHER THE GREATEST IDEAS IN HOUSING. I INDIVIDUAL FLYERS UP HERE IF YOU LIKE TO TAKE SOME. THE SECOND PROGRAM THAT WE RUN IS A COALITION FOR COMMUNITY CHOICE. œIT'S A NETWORK OF ORGANIZATIONS AND INDIVIDUALS WHO ARE SPEAKING AS ONE VOICE TO BE ABLE TO INCREASE OPTIONS AND DECREASE BARRIERS TO HOUSING AND EMPLOYMENT CHOICES. THE THIRD THING THAT WE DO IS EMPOWER LOCAL COMMUNITIES BY PROVIDING CONSULTATIONS AND PRESENTATIONS TO HELP INFORM LOCAL COMMUNITIES OF ALL OF THEIR OPTIONS. TODAY I'M GOING TO SPEAK ABOUT SPECIFICALLY THE AUTISM HOUSING NETWORK. IT'S A CULMINATION OF MANY YEARS OF RESEARCH. OUR FOUNDATION HAS INVESTED OVER A HALF MIDST INTO GOING AND DOING SITE VISITS. I PERSONALLY HAVE BEEN TO OVER 100 RESIDENTIAL OPPORTUNITIES AND SOCIALITY ENTERPRISES ALL AROUND THE COUNTRY AND ABROAD. A DIRECT OUT GROWTH OF THE 2009 OPENING DOORS STUDY AND INITIATIVE BY ARIZONA STATE UNIVERSITY AND SOUTHWEST AUTISM RESOURCE AND RESEARCH CENTER. AND ONE OF THE THINGS THAT THEY HAVE CALLED FOR WAS TO HAVE AN INTERACTIVE DATABASE THAT IS WHAT WE HAVE DEVELOPED WITH AUTISM HOUSING NETWORK. WE ARE ALSO GROWING THIS DATABASE IN A HOUSING DIRECTORY OF NOT JUST EXISTING OPPORTUNITIES BUT ALSO EMERGING OPPORTUNITIES AND OPPORTUNITIES THAT ARE IN THE PLANNING STAGES IN ORDER TO HELP PEOPLE CONNECT. WE HOST FORUMS AND DO A LOT OF CONSULTATIONS TO BE ABLE TO HELP PEOPLE. SO I'M QUICKLY GOING TO WALK YOU THROUGH THE AUTISM HOUSING NETWORK WITH HOPES THAT IT ALSO BRINGS UP SOME POTENTIAL QUESTIONS THAT CAN INFORM RESEARCH. WE REALLY NEED A LOT OF INFORMATION, EVIDENCE-BASED INFORMATION FOR HOUSING BECAUSE WE BELIEVE THAT HOUSING IS THE HUB OF THE WHEEL. WE CAN PUT SO MUCH EFFORT INTO EMPLOYMENT AND DEVELOPING NATURAL SUPPORTS AND CREATING SOCIAL NETWORKS BUT IF SOMEONE LOSES THEIR HOUSING AND THEY ARE HAVING TO MOVE TWO COUNTIES AWAY, ALL OF THAT ENERGY, EFFORT AND RESOURCES HAVE JUST BEEN LOST. INDIVIDUALS LOSE THEIR HOUSING BECAUSE MAYBE THEIR GROUP HOME PROVIDER GOES OUT OF BUSINESS. MAYBE THEIR RENT HAS INCREASED OUT OF THEIR PRICE RANGE. MAYBE THEIR FAMILY MEMBER HAS DIED. MAYBE THEY LIVE IN A ADULT FOSTER CARE SITUATION AND THEIR HOST HOME CAN NO LONGER SUPPORT THEM. THESE ARE ALL REASONS WHY PEOPLE MIGHT LOSE THEIR HOUSING AND THEIR LOSE ALL OF THAT SUPPORT NETWORK THAT WE WORKED SO HARD TO BUILD. SO WE REALLY BELIEVE THAT HOUSING IS THE HUB OF THE WHEEL.& THERE IS A SHOT OF OUR FRONT PAGE. THERE IS ALSO A WELCOME VIDEO ON OUR HOMEPAGE WHICH WILL ALLOW YOU TO WATCH THE DIFFERENT FUNCTIONINGS OF THE AUTISM HOUSING NETWORK AS WELL. WE HELP PEOPLE AND GIVE RECOMMENDATIONS ON HOW TO EXPLORE HOUSING ONES AND CREATE HOUSING OPPORTUNITIES AND ADVOCATE FOR HOUSING. WE DEVELOPED INFORMATION ON PUBLIC FUNDING ONE-ON-ONE WHERE YOU CAN GET SUPPORT AND TURNING 18 CHECK LIST AND WE HAVE A SECTION THAT TALKS ABOUT STATISTICS AND WHERE YOU CAN SHARE STATISTICS ABOUT AUTISM AND ADULTHOOD. AND THEN WE ALSO DEVELOPED A VIRTUAL TOUR OF HOUSING. THIS IS A VIDEO SERIES WE OFFER FOR FREE. YOU DON'T REALIZE THERE IS MANY MORE OPTIONS AVAILABLE TO THEM SO THIS TALKS PEOPLE THROUGH THE TRADITIONAL HOUSING AND SUPPORT MODELS, THE CHALLENGES BEING PHASED WITH THE TRADITIONAL MODELS AND EMERGING MODELS THAT, ARE COMING TOGETHER TO BE ABLE TO DEVELOP USING THE TOOLS THAT WE HAVE TODAY I THINK IT'S REALLY IMPORTANT WE REALIZE THAT THERE IS NOT A ONE-STOP-SHOP. THAT THERE ARE BENEFITS AND CONSIDERATIONS TO THE MULTITUDE OF HOUSING MODELS AND SERVICE DELIVERY SYSTEMS. THIS IS A SCREENSHOT OF OUR AUTISM HOUSING NETWORK, THE HOUSING DIRECTORY. THIS HOUSING DIRECTORY CAN BE VIEWED IN THE MAP VIEW AND IN THE LIST VIEW. WE HAVE CREATED A SET OF FILTERS BASED ON OUR RESEARCH TO HELP PEOPLE IDENTIFY WHAT COULD BE SOME BEST PRACTICE MODELS. THEY ARE FILTERED BY PROPERTY TYPE, SUPPORT MODEL, PAYMENT OPTIONS, LIFESTYLES, SUPPORT LEVELS, AND THEN THE PRIMARY RESIDENCE. SOME QUESTION THAT IS COME TO MIND RIGHT NOW IT'S BEING FILTERED FOR LIVE, WORK, PLAY COMMUNITIES AND PLANNED COMMUNITIES WITH BUILT IN SUPPORT SERVICES. A LOT OF INDIVIDUALS ON THE SPECTRUM MAY NEVER QUALIFY FOR MEDICAID WAIVERS OR MEDICAID LONG TERM SUPPORT SERVICES YET THEY NEED TO HAVE SOME ADDITIONAL SUPPORT TO BE ABLE TO LIVE INDEPENDENTLY. I WAS JUST LAST WEEK IN FLORIDA VISITING A COMMUNITY CALLED THE ARK VILLAGE OF JACKSONVILLE. AND THERE ARE A LOT OF INDIVIDUALS THAT LIVE THERE. THEY PAY 30% OF THEIR SSI AND THEY HAVE BUILT IN SUPPORTS LIKE A COMMUNITY NAVIGATOR. THEY HAVE BUILT IN TRANSPORTATION. THEY HAVE VOLUNTARY PLANNED ACTIVITIES WHERE THEY DON'T HAVE TO TRY TO CALL FRIENDS UP TO COORDINATE OR FIGURE OUT RIDES. IT'S ALL DONE. THEY JUST HAVE TO DECIDE IF THEY WANT TO GO OR NOT. THEY HAVE A DINING OPTION IF THEY -- THEY HAVE FULL KITCHENS. ONE BEDROOM AND TWO BEDROOM APARTMENTS BUT AT THE SAME TIME THEY CAN ACCESS DINING EXPERIENCE SIMILAR TO A COLLEGE DORM. AND THEN AS WELL THEY HAVE A PARTNERSHIP WITH A LOCAL COLLEGE SO THAT THERE IS NURSING STAFF THERE ALL THE TIME. AND THAT IS SO GREAT BECAUSE THESE ARE NURSING STUDENTS WHO ARE FINALLY GETTING FACE TO FACES TIME WITH INDIVIDUALS WHO HAVE AUTISM AND OTHER DEVELOPMENTAL DISABILITIES. SO I THINK THAT LOOKING AT WHEN WE TALK ABOUT LIKE THIS MORNING'S SUICIDE RATES, IF AN INDIVIDUAL HAS NO CHOICE BUT TO LIVE WITH THEIR FAMILY, THEY DON'T HAVE A JOB, THEY ARE NOT ACCESSING THEIR COMMUNITY, THEY ARE ISOLATED, HOW DOES THAT INFLUENCE SUICIDE PLATES WHAT IF WE WERE TO START TO LOOK AT THE SUICIDE RATES OF INDIVIDUALS WHO HAVE BEEN ABLE TO ACCESS RESIDENTIAL SUPPORTS IN DIFFERENT TYPES OF SETTINGS, WHETHER THAT BE HOST HOMES, GROUP HOMES, LIVING INDEPENDENTLY IN THEIR OWN APARTMENT OR TOWNHOUSE, LIVING IN A HOME THAT THEIR FAMILY BOUGHT FOR THEM. HOW DOES THE SUICIDE RATES INFLUENCE WHEN SOMEONE IS ABLE TO LIVE OUT ON THEIR OWN. ADDITIONALLY, I THINK SOMETHING VERY INTERESTING IS THAT PAYMENT OPTIONS. A LOT OF PEOPLE DON'T REALIZE THAT THERE ARE PRIVATE PAY COMMUNITIES ACROSS THE COUNTRY WHERE FOR FAMILIES WHO ARE WEALTHY, ARE ABLE TO PRIVATE PAY FOR THEIR LONG TERM SUPPORT SERVICES FOR THE LIFESPAN OF THEIR LOVED ONE. THEY OPERATE TYPICALLY BETWEEN 3 AND 5000 DOLLARS A MONTH. WHEN COMPARED TO PUBLICLY FUNDED ONES, OFTENTIMES IT IS LESS THAN THE PUBLICLY FUNDED OPTIONS IN THE AREAMENT I WONDER BECAUSE IT'S PRIVATE PAY, IS THERE A DIFFERENCE IN THE QUALITY OF LIFE OF THE INDIVIDUALS? THEIR SATISFACTION WITH THEIR SUPPORTS? IS THERE A DIFFERENCE IN THE QUALITY OF THE STAFF? IS THERE A DIFFERENCE IN ABUSE RATES? IS THERE A DIFFERENCE IN THE FISCAL RESPONSIBILITY OF PRIVATE PAY MODELS IN COMPARISON IS TO PUBLICLY-FUNDED ONES? IT'S WORTH LOOKING INTO. ADDITIONALLY, I THINK THAT LOOKING AT PROPERTY TYPES AS WELL AND THEN LIFESTYLES. THERE IS DIFFERENT LIFESTYLES FOR DIFFERENT PEOPLE. PEOPLE ON THE SPECTRUM ARE JUST AS DIVERSE AS THE NEUROTYPICAL POPULATION IN TERMS OF LIFESTYLES. I WAS IN OHIO JUST A FEW WEEKS AGO VISITING A COMMUNITY CALLED SAFE HAVEN FARMS. AND IT WAS ESTABLISHED BY A FATHERED WHO HAD TRIED TO CREATE AN OPPORTUNITY FOR HIS DAUGHTER WHO HAS HIGH SUPPORT NEEDS, SELF INNAGES BEHAVIOR AND STRUGGLES. SHE HAD LIVED IN A GROUP HOME AND DIDN'T WORK. SHE LIVED IN HER OWN APARTMENT AND IT DIDN'T WORK. THEY HAD CREATED A SUITE IN THEIR BASEMENT OF THEIR HOUSE THAT WAS HER OWN SPACE T DIDN'T WORK. SHE WAS ISOLATED AND FRUSTRATED AND HAVING BEHAVIORS DAILY. FINALLY THEY DEVELOPED A FARMSTEAD. FOUR HOMES IN A RURAL COMMUNITY AND IT IS STAFFED BY A PROVIDER OF THEIR CHOICE WHICH MEANS THE PROVIDER IS NO LONGER WORK ARE FOR THEM. THEY CAN KICK THAT PROVIDER OUT AND HAVE ANOTHER COME IN. BUT IT IS SIGNIFICANTLY INCREASED HER QUALITY OF LIFE. WHEN SHE IS HAVING BAD DAYS, SHE CAN WALK AROUND AN AREA THAT IS COMFORTABLE TO HER WHERE SHE CAN PEOPLE JUST EXPECT TO BE ABLE TO SUPPORT HER IN CERTAIN WAYS WHERE SHE CAN DO THINGS SHE LIKES TO DO AND IF SHE HAS TO WALK AROUND IN HER PJs BECAUSE WE CAN'T GET CHANGED AT THAT PARTICULAR MOMENT, IT'S OKAY. AND THIS DOESN'T HAVE TO BE A RURAL COMMUNITY LIKE A FARMSTEAD BUT I THINK OTHER CAMPUS BASED MODELS NEEDS TO BE LOOKED AT AND WE NEED OPTIONS FOR THIS PART OF THE SPECTRUM WHO ARE OFTENTIMES INSTITUTIONALIZED. WE NEED TO BE ABLE TO SUBMIT LISTINGS. OPPORTUNITIES THAT ARE ON THE AUTISM HOUSING NETWORK HAVE BEEN SUBMITTED BY PEOPLE ALL AROUND THE COUNTRY. IF YOU KNOW OF A OPPORTUNITY, FEEL FREE TO RECOMMEND IT. WE ALSO HAVE A RESOURCE DIRECTORY YOU CAN ALSO SUBMIT LISTINGS IN. AGAIN IT ALSO HAS A VERY SPECIFIC FILTER OPPORTUNITY. THESE OBJECTIVES INCLUDE BEING ABLE TO ACCESS PUBLIC SUPPORT, OPPORTUNITIES AND RESOURCES FOR DEVELOPING HOME OWNERSHIP MODEL, OPPORTUNITIES FOR MANAGING SUPPORT SERVICES ARE IN THIS FIELD. IN THE TOPICS FIELD, THIS IS JUST AN EXAMPLE. WE HAVE 21 RESOURCES THAT TALK ABOUT SENSORY FRIENDLY DESIGN AND ARCHITECTURE. I BELIEVE THERE IS ALMOST 300 RESOURCES IN THE AUTISM HOUSING NETWORK RIGHT NOW. ANYBODY CAN ADD TO THESE THINGS. WE ALSO HAVE THINGS LIKE TOOLS FOR LIFE SKILLS. SURVEY AND ASSESSMENT TOOLS. AN AREA OF RESEARCH THAT IS DFINITELY NEEDED IS RIGHT HERE ASSIST AND I HAVE SMART HOME TECHNOLOGY. HOW ABOUT WE USE TECHNOLOGY? HOW MUCH MONEY IS SAVED USING TECHNOLOGY TO INCREASE DIRECT SUPPORT STAFFING? AS WELL AS IMPROVING QUALITY OF LIFE BECAUSE SOMEONE DOESN'T HAVE TO HAVE A PERSON INSIDE THEIR APARTMENT. THEY CAN HAVE ACCESS TO ON DEMAND SUPPORT. HOW DOES IT CHANGE SELF DIRECTION OF AN INDIVIDUAL TO NOT HAVE SOMEONE BUTTING IN OR INTERRUPTING THEM WHEN THEY ARE TRYING TO FIGURE OUT HOW TO SOLVE A PROBLEM? WHAT DOES IT DO TO ABUSE RATES TO HAVE CAMERAS IN COMMON AREAS AND TO USE TECHNOLOGY? RIGHT NOW THE ABUSE RATE IS ALMOST 70%. THAT'S UNBELIEVABLE. COMPLETELY UNACCEPTABLE. ANOTHER AREA THAT I THINK WOULD BE REALLY HELPFUL IS RIGHT HERE. SURVEY AND ASSESSMENT TOOLS TO BELIEVE ABLE TO START TRACKING WHAT HAPPENS TO AN INDIVIDUAL'S QUALITY OF LIFE AS WELL AS THEIR ACTIVITIES OF DAILY LIVING WHETHER THEY MOVE OUT OF THEIR FAMILY'S HOUSE. WHY DO WE ASSUME THE NEURODIVERSE POPULATION DOESN'T GROW LIKE A NEUROTYPICAL PERSON WHETHER THEY LEAVE THEIR FAMILY HOME? HOW MUCH ARE INDIVIDUALS REGRESS FIGURE THEY ARE STAYING IN THEIR FAMILY HOME? WHY IS GOVERNMENT FORCING FAMILIES TO KEEP PEOPLE IN THEIR FAMILY HOME INSTEAD OF GIVING SUPPORTS TO MOVE OUT INTO THE COMMUNITY? IN THE LONG RUN, ARE WE SAVING MONEY BY KEEPING THEM IN THEIR FAMILY AND MAKING THEM MORE AND MORE DEPENDENT? OR WOULD IT BE A BETTER INVESTMENT IF WE WERE TO INVEST IN THE INDIVIDUAL, GIVE THEM THE SUPPORTS AND THE HOUSING THEY NEED SO THEY CAN CONTINUE TO GROW IN THEIR INDEPENDENT LIVING SKILLS? WE HAVE A DISCUSSION FORUM. I KNOW WE ARE GETTING CLOSE ON TIME. WE HAVE AN AREA THAT TALKS ABOUT STORIES. SO A LOT OF THE SITE VISITS I HAVE DONE, I DO INTERVIEWS WITH RESIDENTS WHERE I VIDEOTAPE THEIR RESPONSES TO QUESTIONS LIKE WHAT DO YOU LIKE BEST ABOUT WHERE YOU LIVE AND WHAT WOULD YOU CHANGE? WE OFFER CONSULTATIONS TO INDIVIDUALS WHO ARE HAVING CHALLENGES. WE OFFER CONSULTATIONS TO EMERGING PROJECTS. SOMETHING THAT IS REALLY IMPORTANT TO KEEP IN MIND AND THAT HAUNTS ME IS THAT, THAT MILLION BEAM LIVE WITH A CAREGIVER OVER THE AGE OF 60. EVERY TWO WEEKS, I GET A CONSULT REQUEST WHERE A FAMILY MEMBER A SIBLING OR AN UNCLE OR A NIECE OR A NEPHEW SAYS, MY AUNT JUST DIED. I DON'T KNOW WHAT TO DO WITH MY COUSIN. HELP ME. WHAT DO I DO? THESE ARE PEOPLE WHO HAVE NOT HAD ANY EXPERIENCE IN THE SYSTEM. NAVIGATING THIS MAZE AND ALL OF A SUDDEN, THEY DON'T KNOW WHAT TO DO. OUR NEXT STEPS WILL BE DEVELOPING AIL MARKET STUDY WITH THE SAME LEADERS WHO DEVELOP THAT OPENING DOOR STUDY THAT THE AUTISM NETWORK GREW OUT OF. WE ARE COMBINING FORCES TO BE THE FIRST PLACE ARIZONA GLOBAL LEADERSHIP INSTITUTE TO DO A MARKET SURVEY. WHERE WE CAN TALK ABOUT WHAT ISSUE THE SUPPORT MODELS OUT THERE? THERE IS SAY HUGE EVOLUTION IN THE WAY IN WHICH PEOPLE ARE SUPPORTED AND WHERE THEY LIVE AND THERE IS EMERGING NICHE MARKET THAT NEEDS TO BE DEFINED. SO WE ARE CREATING A STUDY IN ORDER TO CREATE THAT FOUNDATIONAL NOMENCLATURE SO WE CAN TALK TO THE PRIVATE SECTOR ABOUT HOW DO WE EXPONENTIALLY INCREASE ONES? WHAT ARE SOME OF THE INCENTIVES IN POLICY THAT CAN BE PUT INTO PLACE SO WE CAN CREATE MORE SUPPORTIVE HOUSING OPPORTUNITIES? MORE HOME OWNERSHIP MODELS? AND THEN TRYING TO DEVELOP THE RELATIONSHIPS BETWEEN MAJOR ENTITIES LIKE A HOUSING AND FINANCE AUTHORITY AND MEDICAID, FOR THEM TO BE ABLE TO THINK MORE CREATIVELY ABOUT HOW ARE WE USING OUR EXTREMELY LIMITED DOLLARS. IF YOU WOULD LIKE TO KNOW MORE, PLEASE FEEL FREE TO COME UP AND SPEAK TO ONE OF US. WE WOULD BE HAPPY TO TALK TO YOU ABOUT IT. [ APPLAUSE ] >> JALYNN PRINCE: DESIREE IS A ROCK STAR. SHE HAS BEEN RECEIVED SO WELL ACROSS THE COUNTRY. AND NUMEROUS PROJECTS SHE HELPED TO BEGIN ACROSS THE COUNTRY IN CHANGING LIVES AND COMMUNITIES. THOUGH WE ARE A NATIONAL ORGANIZATION, WE ARE ALSO ACTING LOCALLY BECAUSE WE BELIEVE THAT MOST OF THESE SOLUTIONS WILL BE DEVELOPED BY PEOPLE WITHIN THEIR OWN COMMUNITIES THAT ARE INFORMED AND WILL THAT THEY KNOW WHAT IS HAPPENING. TO LET YOU KNOW THAT WE DO HAVE SOMETHING ELSE HAPPENING WITH MADISON FIELDS, THERE WAS A VERY INTERESTING ATTORNEY THAT JUST BEFORE HE DIED, PUT US IN HIS WILL. AND WE INHERITED THE EQUITY IN A FARM, 4-00 ACRE FARM IN JEFFERSON, MARYLAND. -- 400 ACRE FARM. WE WANT TO ENCOURAGE RESEARCH FOR -- WE WANT TO ENCOURAGE RESEARCH DOLLARS COMING FORWARD TO HELP THIS POPULATION. AND I DIDN'T TOUCH THAT AND IT FLIPPED FORWARD. OKAY. IT'S GOT A MIND OF ITS OWN. WE WANT TO PROVIDE A PLACE AS WE ARE DOING JOB TRAINING, THE AGRICULTURAL RESERVE SO WE HAVE TO FIND THINGS TO EDUCATION AND EMPLOYMENT THAT WE CAN TRAIN PEOPLE ON OUR FARM TO GO TO OTHER FARMS AND WORK IN OTHER PARTS OF THE COMMUNITY. BUT THEY CAN HAVE THE SUPPORT AND LEARNING, WHAT THEY NEED TO LEARN, BY BEING WITH OTHERS. THE THING THAT IS SO UNIQUE IS THAT WE ARE BRINGING THREE POPULATIONS TOGETHER. FIRST THE NEUROTYPICAL POPULATION. THEY ARE PARTICIPATING ON OUR FARM. WE HAVE FORMER MILITARY, SOME WITH PTSD, WE HAVE SOME FOLKS FROM WATERER REED THAT COME OUT AND WORK WITH US. THEY ARE FINDING NEW MEANING IN LIFE ESPECIALLY WHERE THERE IS SURVIVOR GUILT. WHY AM I STILL HERE AND MY BUDDIES ARE GONE? THEY FIND THEY CAN WORK ALONGSIDE OTHER INDIVIDUALS AND HAVE A NEW MEANING IN THEIR LIVES AND OUR INDIVIDUALS ARE ENHANCED BY THEIR LIFE EXPERIENCE AND THEN WE HAVE THOSE WITH AUTISM AND INTELLECTUAL DISABILITIES. AND WE WANT TO PARTNER WITH UNIVERSITIES AND OTHERS DOING RESEARCH BECAUSE WE WILL HAVE A CRITICAL MASS THERE AND WE WANT MORE RESEARCH BEING DONE. SO IN ANOTHER 10, 20 YEARS, THERE WILL BE A LOT POPULAR INFORMATION. WE COULD HARDLY FIND OUT NUMBERS IN MARYLAND OF HOW MANY PEOPLE NEEDED TO HAVE SERVICES. WE HAVE COME A LONG WAY BUT WE HAVE A LONG WAY TO GO. SO WE HAVE GOT OUR CALL FOR ACTION WITH AUTISM AFTER 21. LOOK AT SOME OF THE THINGS WE ARE DOING AND WORKING WITH HOUSING. AND THOSE ARE OUR THREE TAKEAWAYS TODAY. AND I THOUGHT WE HAD ONE&-œQUOTATION HERE. THE IDEA ISN'T LIMITING SEATS AT THE TABLE. EVERYONE NEEDS A SEAT AT THE TABLE AND HOW DO WE DO THAT? WE GET A BIGGER TABLE. THAT WAS ONE OF THE STATEMENTS THAT CAME OUT OF OUR AUTISM AFTER 21 BREAKFAST THIS YEAR. I'D LIKE TO YOU TAKE THAT WITH YOU AS YOUR MAKING DECISIONS HERE WITH THIS AUSPICIOUS GROUP AS WE GO OUT INTO THE COMMUNITY AND THOSE LISTENING TO US. LET'S EMPOWER ONE ANOTHER. LET'S MAKE CERTAIN IS THAT WE ARE AWARE OF THIS VERY IMPORTANT PART OF THE POPULATION AND THAT WE CAN DO SOMETHING POSITIVE AND THAT WE CAN WORK IN PARTNERSHIP TO ENHANCE THE ABILITIES TALLENTS AND UNDERSTAND THE CHALLENGES OF ADULTS WITH AUTISM THANK YOU. [ APPLAUSE ] >> DR. DANIELS: THANK YOU FAR YOUR WONDERFUL PRESENTATION. WE HAVE A FEW MINUTES FOR QUESTIONS. WE CAN TAKE QUESTIONS UNTIL 3:10. SO IF YOU WOULD LIKE TO DISCUSS THE PRESENTATION, PLEASE GO AHEAD. >> SAM: HI, I'M SAM. I'M REALLY SURPRISED THAT THE PRESENTATION MENTIONED THAT AUTISTIC ADULTS ARE AN INVISIBLE POPULATION AND WE HAVEN'T BEEN ADDRESSED UNTIL NOW SINCE THE AUTISTIC SELF ADVOCACY NETWORK HAS BEEN TALKING ABOUT AUTISTIC ADULTS FOR 10 YEARS. AND THERE IS NO ONE REALLY BETTER TO TALK ABOUT THE NEEDS OF AUTISTIC ADULTS THAN AUTISTIC ADULTS. I THINK THAT THERE ARE A LOT OF THINGS THAT MADISON HOUSE AND ASAN HAVE IN COMMON IN WHAT WE WANT FOR AUTISTIC ADULTS. OBVIOUSLY WE ALL WANT COMMUNITY PARTICIPATION AND WE ALL WANT INTEGRATION. WE ALL WANT PEOPLE TO NOT BE TRAPPED IN THEIR PARENT'S HOUSES FOR THEIR ENTIRE ADULTHOOD. BUT I'M REALLY CONCERNED THAT WHEN WE TALK ABOUT AUTISM AND HOUSING, WE ARE JUST INVESTIGATING INTENTIONAL COMMUNITIES HERE AND THAT IS REALLY NOT WHAT THE -- THAT IS ONE CHOICE BUT IT'S NOT THE ONLY CHOICE AND IT CERTAINLY IS NOT THE ONLY CHOICE THAT ALLOWS PEOPLE TO MOVE OUT OF THEIR PARENT'S HOMES. A LOT OF PEOPLE WHO WANT TO LIVE WITH FRIENDS, THEIR SOLUTION IS THEY GO UP TO THEIR FRIEND OR THEY HAVE THEIR PARENTSES HELP THEM GO UP TO THEIR FRIEND AND SAY HEY, LET'S FIND AN APARTMENT, A 3 BEDROOM APARTMENT, YOU ME AND JOE AND WE'LL ALL BE LIVING IN THIS 3 BEDROOM APARTMENT. UNFORTUNATELY, THERE IS SO MUCH LESS MONEY GOING INTO RESEARCH ON TO HOW TO MAKE NA WORK, EVEN THOUGH IT IS LIKE THE VAST MAJORITY OF AUTISTIC ADULTS WHOMENT TO MOVE OUT OF THEIR PARENT'S HOMES ARE DOING. AND I WANT TO MAKE SURE IS THAT WHEN WE DO INVEST IN RESEARCH ON HOUSING PROJECTS, WE ARE NOT JUST RESEARCHING ONE KIND OF HOUSING PROJECT THAT HAS A NAME AND A FENCE AROUND IT. BUT, ALSO THE FULL RANGE HERE. >> THANK YOU FOR YOUR COMMENTS. I APOLOGIZE IF IT CAME OFF AS IF WE ONLY SUPPORT INTENTIONAL COMMUNITIES. WE CERTAINLY DON'T. I THINK THAT ONE SIZE DOES NOT FIT ALL AND THAT RESEARCH MONEY SHOULD ABSOLUTELY BE GOING TO THE BROAD RANGE OF HOUSING AND SERVICE DELIVERY MODELS BECAUSE WE HAVE A BROAD RANGE OF INDIVIDUALS ON THE SPECTRUM. >> SUES SUES DAVID. >> DAVID: AS FAR AS I KNOW, THERE ARE VERY FEW NETWORKS OF HOUSING OPPORTUNITIES FOR ADULTS WITH AUTISM AND WE HAVE A REAL POSSITY OF RESEARCH ABOUT THE OUTCOMES OF DIFFERENT MODELS OF HOUSING. PART OF THE CHALLENGE OF DOING THAT KIND OF RESEARCH IS THAT OFTEN LOOKING AT THE OUTCOMES OF A PARTICULAR SETTING IS HOPELESSLY CONFOUNDED BY THE NEEDS AND PRESENTATION OF THE BEAM LIVE IN THAT PARTICULAR SETTING. I WONDER IF YOU THINK THERE IS ENOUGH VARIABILITY IN THE DIFFERENT TYPES OF SETTING PART OF YOUR NETWORK THAT MIGHT LEND ITSELF TO SOME KIND OF RESEARCH NETWORK THAT WOULD ALLOW US TO LOOK AT DIFFERENT KINDS OF OUTCOMES FOR BEAM WITH AUTISM. >> PART OF OUR MARKET SURVEY IS TRYING TO DEFINE THOSE TYPES OF OPPORTUNITIES WHERE WE CAN DEFINE THE SERVICE DELIVERY MODEL IN GENERAL AND THEN DEFINE HOUSING PROPERTY TYPE AND THEN ALSO DEFINE POPULATION BASED ON THEIR SUPPORT NEEDS SO THERE CAN BE RESEARCH DONE WITH EITHER ONE SUBPOPULATION AND ONE TYPE OR TO LOOK AT THE VARIABILITY. SO IN ANY WAY YOU CAN INFORM HOW WE ARE DEVELOPING THIS MARKET SURVEY, I CERTAINLY WOULD LIKE TO TALK WITH YOU FURTHER TO MAKING SURE WE ARE CREATING PARAMETERS IN A WAY IN WHICH YOU CAN DO YOUR RESEARCH. >> SAM: I PERSONALLY LIVE WITH ANOTHER AUTISTIC PERSON. WE HAVE A SHARED HOUSING MODEL IF THE NETWORK WE ARE LOOKING AT IS JUST PROJECTS THAT HAVE SIGNED UP TO BE PART OF THE AUTISM HOUSING NETWORK, HOUSEHOLDS LIKE MINE WON'T BE ON IT AND WON'T BE INCLUDED IN MARKET RESEARCH AND THAT'S GOING TO CONTRIBUTED TOWARDS A BIAS TOWARDS PLANNED INTENTIONAL COMMUNITIES AS OPPOSED TO WHAT I WOULD CALL SPONTANEOUS INTENTIONAL COMMUNITY, WHICH A BUNCH OF PEOPLE JUST SAY, LET'S LIVE TOGETHER AND THEN THEY LIVE TOGETHER AND THEY DON'T HAVE A NAME. SO I WANT TO KNOW HOW TO MAKE SURE THE FULL RANGE IS INCLUDED IN THAT STUDY. >> [ OFF MICROPHONE ] >> [ INDISCERNIBLE ] >> DESIREE KAMEKA: YOU DON'T HAVE TO SIGN UP FOR THE AUTISM HOUSING NETWORK BUT LOOKING AT THE PROVIDERS OF INDIVIDUALS WHO HAVE SUPPORTS, SO CONSUMER CONTROLLED HOUSING AND PROVIDER-CONTROLLED HOUSING ARE TWO DIFFERENT TYPE OF SERVICE DELIVERY MODELS. PROVIDER-CONTROLLED HOUSING IS ONE WHERE SERVICES AND HOME ARE TIED TOGETHER. CONSUMER-CONTROLLED IS WHEN AN INDIVIDUAL SECURES THEIR HOUSING SEPARATE FROM THE SERVICE DELIVERY MODEL AND SO, I THINK WHEN WE ARE LOOKING AT THE QUALITY OF LIFE OF INDIVIDUALS, WE'LL PROBABLY BE HAVING TO LOOK AT THE SERVICE PROVIDERS AND WILL THEREFORE THE SERVICE PROVIDERS WILL LIKELY BE SERVING NEME A VARIETY OF DIFFERENT HOUSING OPPORTUNITIES. AND SO I THINK THAT THAT WOULD BE ONE WAY THAT WE CAN ENSURE THAT HOUSING ARRANGEMENTS LIKE YOURS, SAM, WOULD BE ACCOUNTED FOR. >> I WOULD LOVE THE IDEA OF COMBINING. SO PART OF OUR CHALLENGE IS WE ARE LOOKING FOR ADULTS WITH AUTISM TO DO THE KIND OF WORK THAT JOHN WAS REFERRING TO EARLIER. AND THAT INTRODUCES ITS OWN BIAS WHEN YOU WANT TO STUDY HOUSING. BUTIGES COMBINING SOME KIND OF NETWORK WITH SOME KIND OF SURVEY OF ADULTS WITH AUTISM WHO ARE LIVING IN DIFFERENT -- IN SETTINGS THAT AREN'T CAPTURED IN THIS NETWORK, COULD BE A VERY POWERFUL TOOL TO UNDERSTAND -- TO ANSWER THESE QUESTIONS. >> I DIDN'T MEAN TO LIKE BE A NAG ABOUT THE HOUSING NETWORK. I'M JUST SAYING THAT MOST PEOPLE IF THEY CHOOSE TO LIVE TOGETHER IN LIKE A GROUP OF THREE PEOPLE, THEY WON'T GO AHEAD AND LIKE REGISTER THEIR HOUSE ON INTERNET DATABASE NECESSARILY. THEY JUST LIVE THEIR LIVES. >> DAVID? >> COMING FROM COMPLETELY OUT OF THIS WHOLE AREA, BIOLOGISTS, I FIND IT FASCINATING AND ONE OF THE ADVANTAGES OF HAVING A NETWORK IF YOU'RE GOING TO DO THIS EXPERIMENTALLY, YOU SAY WE HAVE SEVERAL HOUSING MODELS AND LET'S TAKE A GROUP OF INDIVIDUALS WITH AUTISM ACROSS THE VARIABILITY AS DAVIDS WAS SAYING AND PLACE THEM IN EACH OF THE MODELS, STUDY THEM FOR 20 YEARS, AND THEN FIND OUT WHAT MODEL WORKS BEST. >> WE DON'T HAVE 20 YEARS. >> DAVID: I'M JUST BEING FACETIOUS. HAVING A NETWORK WHERE YOU CAN TRY AND GET A SEMBLANCE OF THAT, I THINK IT MAKES A HUGE AMOUNT OF SENSE. AND BEYOND THAT, IF YOU GET SOME DATA FROM THAT NETWORK, IT'S LIKE A LOT OF THE BIOLOGICAL STUDIES. WE ARE NOT ENCOMPASSING ALL SUBJECTS TO HAVE A PARTICULAR TRAIT. BUT IF WE GET INFORMATION ABOUT THAT TRAIT, THEN WE CAN APPLY IT TO THE BROADER AUTISM COMMUNITY. SO I 19 A SENSE YOU DON'T HAVE TO FEEL LIKE LEFT OUT BECAUSE -- IN A SENSE -- YOU JUST WANT TO TAKE ADVANTAGE OF SOMETHING THAT IS ESTABLISHED FLORIDA TO TRY AND GET SOME WORK DONE AND THEN GO TO THE NEXT TO REPLICATE IT. >> STAM: MY MAIN POINT IS CERTAIN MODELS SYSTEMATICALLY WILL NEVER BE ON THIS NETWORK. AND THAT'S A CONCERN. >> DAVID: SO MY STRUGGLE WITH THIS DISCUSSION IS THAT YOU HAVE TO PICK YOUR BATTLES. I THINK PART OF THE REASON WHY THE PERCENTAGE OF FUNDING GOING TO THIS KIND OF RESEARCH IS PERHAPS SO SMALL IS BECAUSE THE BATTLES ARE REALLY DIFFICULT AND COMPLICATED. AND I THINK YOU HAVE TO START WITH DOABLE RESEARCH. AND THEN YOU EXPAND BEYOND THERE. SO, EVEN IN ANIMAL MODELS. THERE IS PROBABLY HUNDREDS OF ANIMAL MODELS IMPLICATED OR ASSOCIATED WITH AUTISM BUT YOU WANT TO FOCUS ON THE FEW THAT HAVE THE BIGGEST PAY OFF. SO IN THIS CASE, COME UP WITH A SYSTEM IS THAT MAY HAVE THE BIGGEST PAY OFF. >> SAM: I DISAGREE. THAT AN INTENTIONAL COMMUNITY -- I DON'T THINK WE HAVE ANY INDICATION THAT ON A BROAD POLICY WIDE LEVEL FOUR PEOPLE DECIDING TO LIVE TOGETHER WILL HAVE SOME HOW A LESS BIG PAY OFF THAN FOUR PEOPLE DECIDING TO LIVE TOGETHER AND CALLING IT AN INTENTIONAL COMMUNITY AND PUTTING IT ON THIS WEBSITE. AND CERTAIN KINDS OF ARRANGEMENTS ARE SYSTEMATICALLY ARE NOT GOING TO BE ON THE WEBSITE. THEY ARE ACTUALLY AMONG THE MOST COMMON ARRANGEMENTS AND THEY ARE GOING TO BE LEFT OFF. THERE IS SERIOUS POLICY IMPLICATIONS TO THIS. IT'S NOT LIKE OH, WE'LL STUDY THIS FIRST AND THEN STUDY THESE OTHER THINGS. THEY ARE VERY, VERY SERIOUS POLICY IMPLICATIONS IF WE ARE STUDYING CERTAIN KINDS OF HOUSING AND NOT OTHER KINDS OF HOUSING THAT I THINK WE HAVE TO THINK ABOUT. >> DR. DANIELS: OTHER COMMENTS THIS TOPIC? ALL RIGHT. WHY DON'T WE -- SORRY JULIE. >> JULIE: I WAS GOING TO JUST SAY, I THINK THAT THESE ARE HIGHLY, HIGHLY COMPLICATED ISSUES. AND THOSE OF US THAT LIVE IN THIS SPACE ON A REGULAR BASIS GRAPPLE WITH ALL THE TIME. AS WE TALK ABOUT, IT SOMETIMES IT ALMOST FEELS LIKE -- I ALMOST SOMETIMES FEEL LIKE I WANT TO THROW MY HANDS UP AND SAY LET'S JUST MOVE FORWARD. I WANT TO ENCOURAGE EVERYBODY TO GRAPPLE WITH THESE ISSUES. MAYBE A STUDY IS NOT THE PERFECT STUDY BUT RIGHT NOW WE KNOW ALMOST NOTHING ABOUT THE EFFECTS OF HOUSING OR EMPLOYMENT OR THE EFFECTS OF ALMOST ANYTHING WHETHER IT COMES TO ADULT RESEARCH. SO SOMETIMES I THINK WE HAVE TO TO START SMALL AND MOVE FORWARD. BUT PROGRESS -- ANY PROGRESS IS HUGE PROGRESS I WOULD SAY AT THIS POINTED. AND BECAUSE WE JUST KNOW SO LITTLE. >> SAM: THE DANGER IS THAT IF ONE OF THE BIGGEST SOURCES OF HOUSING FOR AUTISTIC ADULTS, WHICH IS LIVING, TRYING TO LIVE WITH FRIENDS, WHICH IS A VERY, VERY LARGE GROUP OF PEOPLE WHO TRY TO DO THIS, FOLLOW THEY ARE INVISIBLE, THEN PEOPLE ARE GOING TO BE DIVERTED AWAY FROM THOSE MODELS AND INTO OTHER MODELS THAT WE DON'T KNOW ARE BETTER. AND I DON'T KNOW IF I WOULD EVEN NECESSARILY CONSIDER THAT PROGRESS, IF THAT IS WHAT ENDS UP HAPPENING AND THAT IS WHAT WE ARE WORRIED ABOUT. >> SO I'M NOT SURE WHEN YOU'RE SAYING, MOST PEOPLE. BECAUSE I'LL GIVE YOU AN EXAMPLE. I'M A HOST HOME PROVIDER. SO YOUNG MAN WITH AUTISM LIVES WITH ME. WE INVITED HIM TO LIVE IN OUR HOUSE WHEN HE HAD BECOME HOMELESS. WE HAD KNOWN HIM FOR OTHER REASONS. HE DOES NOT HAVE THE CAPACITY TO CONNECT WITH OTHER INDIVIDUALS AND BE ABLE TO PAY RENT. HE LIVED BEFORE WE GOT HIM A JOB, OFF OF HIS SOCIAL SECURITY. SO 721 DOLLARS A MONTH. FOR HIM, HE IS LUCKY ENOUGH TO BE ABLE TO ACCESS SERVICES. SO I THINK WHEN LOOKING AT RESEARCH PURPOSES, THERE ARE CERTAINLY TWO VERY LARGE DIFFERING COHORTS WHICH ARE INDIVIDUALS WHO CANNOT ACCESS MEDICAID WAIVER SERVICES AND THEN INDIVIDUALS WHO CAN ACCESS MEDICAID WAIVER SERVICES. HAVINGS WHO CAN AFFORD HOUSING BECAUSE THEY HAVE MORE THAN A 20-HOUR PER WEEK JOB AND MAYBE THOSE WHO WILL LIVE OFF OF SSI OR SSDI AND A LITTLE BIT MORE IF THEY ARE ABLE TO ACCESS EMPLOYMENT, WHICH WE KNOW MOST INDIVIDUALS ON THE AUTISM SPECTRUM ARE NOT ACCESSING EMPLOYMENT RIGHT NOW. SO I DO THINK THAT WE CAN TRY TO TEASE SOME OF THE POPULATION APART IN ORDER TO FOCUS ON A SET OF INDIVIDUALS WHO ARE NOT ACCESSING MEDICAID SERVICES WHO HAVE A JOB, WHO ARE HAVING TROUBLE GETTING AFFORDABLE ACCESSIBLE HOUSING OR NOT. FROM WHAT I HEAR IT'S A BIG PROBLEM BEING ABLE TO AFFORD AND FIND HIGHWAYSING AND ROOMMATES THAT WORK. AND THEN YOU HAVE A WHOLE OTHER POPULATION OF INDIVIDUALS WHO DO NOT HAVE THE CAPACITY TO BE ABLE TO DO THAT, WHO DO RELY ON MEDICAID WAIVER SUPPORTS AND WILL NEED TO FIND INTENTIONALLY AFFORDABLE HOUSING, NOT JUST HOUSING VOUCHERS. THEY SAY THERE IS HOUSING VOUCHERS FOR PEOPLE WITH DISABILITIES, THERE IS NOT EVEN A WAITING LIST OPEN IN MANY PLACES IN OUR COUNTRY. IT'S NOT REALLY AN AFFORDABLE HOUSING SOLUTION IN ANY WAY SHAPE OR FORM. >> I THINK SAM'S POINT FROM A STATISTICAL PER WELL SUSPECTIVE IS THAT IF YOU ARTIFICIALLY CONSTRAIN VARIANTS AROUND THE HOUSING OPTIONS THAT YOU STUDY, YOU CAN ONLY FIND THE RELATIVE BENEFIT WITHIN THE RELATIVELY NARROW RANGE TO WHICH YOU CONSTRAIN AND THAT'S HOW YOU END UP WITH CHARLES MURRAY BELL CURVE. RIGHT? SO I THINK THAT WE WANT TO BE REALLY CAREFUL, GIVEN THE POLICY IMPLICATIONS OF WHAT WE ARE DOING TO MAKE SURE THAT THAT WHOLE RANGE IS REPRESENTED TO THE GREATEST EXTENT POSSIBLE. NOW, IN ORDER FOR THAT TO WORK, THERE HAS TO BE ENOUGH OVERLAP IN THE PRESENTATION OF THE INDIVIDUALS LIVING IN THOSE DIFFERENT SETTINGS FOR YOU TO BE ABLE TO DRAW MEANINGFUL CONCLUSIONS. SO YOU HAVE BOTH SETS OF CONSTRAINTS THAT YOU HAVE TO BE VERY, VERY SENSITIVE TO. BUT I DEFINITELY HEAR WHAT YOU'RE SAYING ABOUT THE NEED FOR THE RANGE OF HOUSING OPTIONS TO BE REPRESENTED IF YOU WANT TO MAKE MEANINGFUL -- DRAW MEANINGFUL IMPLICATIONS FROM OR INFERENCES FROM WHAT YOU STUDY. >> AND THE POINT THAT DESRAY MADE ABOUT SECOND 8 VOUCHER IS NOT BEING AVAILABLE IS ANOTHER WAY IN WHICH THIS WILL ENTER SECONDS VERY INTIMATELY WITH POLICY ADVOCACY. BECAUSE IF IT DOES -- IF WE DO RESEARCH ON PEOPLE WHO ARE LIVING ON SSI USING A SECTION 8 VOUCHER TO LIVE WITH WHOMEVER THEY WANT, AND THEY ARE GETTING SELF DIRECTED SERVICES, YES A LOT OF PEOPLE CAN'T ACCESS THAT. BUT IF WE HAVE DATA ON THE OUTCOMES OF HOUSING MODELS LIKE THAT, WE CAN USE THAT TO INFORM POLICYMAKERS ON WHETHER OR NOT THESE SECTION 8 VOUCHERS SHOULD BE MADE MORE AVAILABLE AND WE CAN'T DO THAT WITHOUT THE DATA. >> AND THIS DISCUSSION WHAT YOU'RE SAYING, THIS IS ADRIENNE McBRIDE SPEAKING, HOW IMPORTANT THE MARKET STUDY WE ARE PROPOSING TO DO, IT WILL BUILD ON THE BODY OF RESEARCH TO HELP ANSWER THESE QUESTIONS AND GET THE DATA THAT WE NEED TO ANSWER THESE QUESTIONS. SO IF ANYBODY IS INTERESTED IN PARTNERING WITH THE HOUSING STUDY, PLEASE SEE ME AFTERWARDS. WE CAN DISCUSS HOW TO MOVE FORWARD AND MAKE SURE THAT WE DOLL A REALLY EXCELLENT STUDY. >> ADRIENNE IS AN ACK ABSOLUTELY AMAZING EXPECTSIVE DIRECTOR AND THANK HER FOR ALL THE COORDINATION SHE DOES IN BRINGINGIS HERE TODAY. AND I WANT TO REMIND YOU OF ONE OTHER THING, DURING THE TIME WE HAVE BEEN SPEAKING, ANOTHER 4 1/2 INDIVIDUALS IN AMERICA HAVE JOINED THE RANKS OF ADULTS ON THE AUTISM SPECTRUM. THANK YOU. [ APPLAUSE ] >> DR. DANIELS: THANK YOU. I'D LIKE TO NOW MOVE US INTO OUR BREAK AND FOR US TO BE BACK HERE AT 3:30 TO START UP AGAIN WE HAD JUST FINISHED OUR DISCUSSION OF QUESTION 2. AND I'D LIKE TO MOVE TO QUESTION 3 ON RISK FACTORS. WHAT CAUSES AS. AND CAN DISABLING AG PICTURES BE PREVENTED OR PRE-EMPTED IS THE NEW TITLE FOR THIS CHAPT EVERY UPON. YOU HAVE 3 OBJECTIVES THAT ARE LISTED HERE FOR YOU. DOES ANYONE HAVE ANY COMMENTS ON QUESTION 3 AND THE CONTENT? ANYTHING THAT YOU THOUGHT NEEDS TO BE EXPANDED OR IF THERE WAS SOME TOPIC THAT WAS OMITTED? >> JOHN: I WOULD SAY THE SAME THING, WE NEED TO GET THIS DONE AND WE'LL HAVE PLENTY OF OPPORTUNITY TO MAKE ALL THE CHANGES WE WANT FOR 2017 PLAN IN FOUR MORE MONTHS. >> DR. DANIELS: WE ARE GOING TO BE DOING AN UPDATE IN 2018, THAT SOUNDS FAR AWAY BUT IT IS NOT THAT FAR AWAY. THIS IS A 2016-17 PLAN AND WE WANT TO MAKE SURE IT GETS DONE IN 2017 SO WE DON'T HAVE DO EXPAND THAT NUMBER. [ LAUGHS ] SO, WE WANT TO FINISH THIS PLAN THIS CALENDAR YEAR. AND TING IS COMPLETELY DOABLE. YOU ALL HAVE COME VERY FAR WITH THIS. AND SO I THINK IT IS JUST A FEW MORE STEPS. ANY SUBSTANTIVE COMMENTS ON QUESTION 3, THINGS THAT YOU THINK NEED TO BE ADDED? WALTER KOROSHETZ? >> WALTER: [ LOW AUDIO ] >> DR. DANIELS: DAVID, DO YOU WANT TO ADDRESS THAT. >> DAVID: THAT IS REVIEW PAPER THAT CAME OUT LAST YEAR THAT ACTUALLY WAS A METANALYSIS OF ALL OTHER STUDIES AND THAT IS WHERE IT LANDED AT AROUND 45%. THERE IS QUITE A SIGNIFICANT VARIATION WITHIN DIFFERENT STUDIES OF THIS METANALYSIS. IT WAS [ INAUDIBLE ] THE FIRST AUTHOR OF THAT REVIEW. >> DR. DANIELS: IS THE REFERENCE THERE? YES. OKAY. AND THERE ARE A FEW I KNOW THERE ARE A FEW PAPERS THAT HAVE COME OUT IN THE MEANTIME SINCE THIS WAS WRITTEN. SO, THOSE ARE THINGS THAT IN THE COMMENT PERIOD AS YOU ALL REVIEW IT AND SEND COMMENTS, IF YOU WANT TO ADD A FEW SENTENCES HERE AND THERE OR REFERENCES YOU CAN LET US KNOW. LEWIS? >> LEWIS: I'D LIKE TO SAY I WISH -- [ LOW AUDIO ] >> DR. DANIELS: YOU MENTIONED EVOLUTION OF THE X AND Y CHROMOSOME BUT THAT WASN'T SOMETHING WE WERE ABLE TO WRITE ABOUT IN THE OFFICE. SO WE NEEDED A REFERENCE OR SOMETHING TO GO WITH -- SO IF YOU COULD GIVE US MORE CLARIFICATION, I THINK WE COULD ADDS A FEW SENTENCES. SO EVOLUTION OF X AND Y CHROMOSOME. ANYTHING ELSE TOPIC WISE THAT NEEDS TO BE IN THERE? >> LEWIS: [ OFF MICROPHONE ] >> DR. DANIELS: IF YOU COULD SEND US INFORMATION AND IF WE NEED CLARIFICATION, WE'LL CALL YOU. ANYONE ELSE HAVE COMMENTS ON THIS SECTION? WE DID MAKE THE REVISIONS BASED ON THE COMMENTS AT THE APRIL MEETING TO TRY TO CAPTURE MORE BROADLY THE INTEREST IN PREVENTING DISABILITY BUT ALSO ENSURING THAT RESEARCH IS SUPPORTED FOR PREVENTION IN TERMS OF ENVIRONMENTAL FACTORS THAT MAY EFFECT EARLY IN THE PROCESS. >> SAM: I THINK THAT -- AND I MENTIONED THIS EARLIER TODAY WITH RESPECT TO THE PRENATAL LANGUAGE. I THINK THE GENETIC COUNSELING LANGUAGE IS PROBABLY GOING TO BE INTERPRETED BY A LOT OF PEOPLE IN THE COMMUNITY AS AN ATTEMPT TO SAY YOU HAVE AN AUTISM GENE SO DON'T REPRODUCE OR LET'S SCREEN FETUSES FOR AUTISM BEFORE BIRTH AND TRY TO PREVENT PEOPLE ON THE AUTISM SPECTRUM FROM BEING BORN. I THINK THAT IS SOMETHING THAT IS GOING TO CAUSE A LOT OF ALARM FOR CERTAIN PARTS OF OUR COMMUNITY. BUT I JUST DON'T KNOW IF WE WANT TO NECESSARILY CALL THAT OUT IN THE OBJECTIVES. >> DR. DANIELS: DAVID? >> DAVID: SAM, I THINK THIS IS REALLY IMPORTANT. AND I THINK NOBODY REALLY HAS THE SOLUTION TO THIS YET. EXACTLY WHAT INFORMATION SHOULD BE HANDED OUT AND HOW IT SHOULD BE HANDED OUT, BUT AS WE GET INTO THESE COMPREHENSIVE SURVEYS, THEY WILL BE GENES IMPLICATED IN AUTISM BUT ALSO LONG TERM DISEASES, CANCER AND ALL KINDS OF OTHER THINGS AND I THINK PEOPLE JUST NOW TRYING TO FIGURE OUT -- CERTAINLY THERE ARE IMPLICATIONS YOU SAY BUT THERE ARE ALSO IMPLICATIONS FOR LIFETIME HEALTH, THE FAMILY HAS TO TAKE INTO CONSIDERATION. I THINK IF WE STICK OUR HEAD IN THE SAND AND SAY, WE ARE NOT GOING TO DEAL WITH THIS ISSUE, IN THE END, FAMILIES WILL BE HURT BY THAT BECAUSE THEY POTENTIALLY WON'T BE GETTING VALUABLE INFORMATION RATHER THAN BENEFITING CHILDREN. >> DR. DANIELS: LEWIS. >> LEWIS: GENES ARE IDENTIFIED TARGETS WHICH ALLEVIATE PHENOTYPES AND I THINK ALMOST EVERYBODY WOULD FIND DISCOMFORTING, WHETHER IT IS GASTROINTESTINAL, SLEEP ISSUESER OR WHATEVER. SO THERE IS SAY LOT OF HOPE FROM GENETICS. I HAVE ONE QUESTION FOR DAVID, WHETHER EPIGENETICS IS INTENTIONALLY DISAPPEARED? OR DID I MISS IT? >> SAM: IS THERE A WAY WE CAN WORD THIS LIKE GENE TARGETED THERAPIES OR GENE TARGETED INTERVENTIONS THAT WILL MAKE IT MORE CLEAR THAT THAT IS WHAT WE ARE LOOKING FOR? BECAUSE I AGREE. I THINK THAT GENETICS -- PEOPLE ON THE ASD REACT TO MEDICATIONS, VERY UNPREDICTABLY. FE WE COULD FIND GENE MARKERS FOR THAT IT WOULD BE GREAT. I DON'T THINK ANYONE IN HOUR COMMUNITY WOULD BE OPPOSED. I WANT TO MAKE SURE THAT THAT IS QUAWE ARE CLEAR ABOUT. >> DR. DANIELS: DIANA? >> DIANA: SO THE REALITY IS THAT ANY FETUS WITH A SONO GRAPHIC ABNORMALITY STANDARD OF CARE THAT DIAGNOSTIC TESTING IS RECOMMENDED, WHICH IS USUALLY LATER GESTATION WILL BE AM NOCENTESIS. IF THERE IS A FETAL SONO GRAPHIC ABNORMALITY, A CHROMOSOME MICROARRAY IS CONSIDERED TO BE STANDARD OF CARE. AND THOSE MICROARRAYS ROUTINELY IDENTIFY AREAS OF VARIATION IN THE GENOME THAT ARE ASSOCIATED WITH ASD. SO, AGAIN, I DON'T THINK WE SHOULD STICK OUR HEAD IN THE SAND BECAUSE PART OF OUR RESPONSIBILITY IS TO HELP IDENTIFY AN EVIDENCE BASE OF ACCURATE INFORMATION.& THERE IS SAY LOT OF MISINFORMATION OUT THERE AND BY AVOIDING THE ISSUE, YOU DON'T WANT TO ALLOW PRACTITIONERS WHO DON'T HAVE ACCURATE INFORMATION, TO GIVE INACCURATE COUNSELING. THAT'S MY CONCERN. [ MULTIPLE SPEAKERS ] >> SHE SUGGESTED A SOLUTION, RIGHT? ED. >> SAM: WE COULD CHANGE IT TO GUIDELINES FOR -- I CAN'T EVEN REMEMBER WHAT I SAID ANYMORE. I'M SORRY. IT'S BEEN A VERY LONG DAY. >> THE IMPLICATIONS ARE THAT SOME OF THE MUTATIONS THAT ARE OBSERVED MAY ACTUALLY INDIVIDUAL LONG TERM IMPLICATIONS THAT THE FAMILY HAS TO BE AWARE OF AND I THINK THIS IS TRYING TO EMPHASIZE THAT WE NEED TO COME UP WITH GUIDELINES ABOUT HOW TO PRESENT THOSE DATA AND I THINK EVERYBODY IS STRUGGLING WITH THIS. I REALLY DON'T THINK IT IS INTENDED AND I'M HAPPY TO HAVE IT MORE PALATABLE BUT IT'S NOT INTENDED AS SOMETHING THAT WE WOULD SAY LET'S ELIMINATE THIS INDIVIDUAL. HOW CAN YOU INFORM A FAMILY WHO IS NOT A GENETIC KNOWLEDGEABLE FAMILY ABOUT IMPLICATIONS OF THESE FINDINGS THAT ARE GOING TO BE COMING OUT? I MEAN, IT'S DAUNTING BECAUSE I KNOW THE BEST PEOPLE IN THE WORLD WHO ARE DOING THIS DON'T REALLY HAVE A SOLUTION YET HOW TO DO IT. >> AND THE QUESTION IS, HOW ARE WHY GOING TO CAPTURE THAT NUANCE IN JUST THIS ONE SENTENCE AND I DON'T KNOW -- I DON'T KNOW IF IT'S EVEN POSSIBLE TO CAPTURE THAT NUANCE IN THIS ONE SENTENCE IN A WAY THAT IS -- >> DIANE: I THINK WHAT YOU WANT TO COMMUNICATE IS THE NEED FOR AN EVIDENCE BASE TO PROVIDE DATA ON THE COMPLEXITY OF ASD RISK GENES TO ALLOW PROVIDER EDUCATION AND INFORMED FAMILY DISCUSSIONS. >> SAM: I DON'T THINK THAT'S ENOUGH. FRANKLY WE SEEN THIS IN A LOT OF PARTS OF THE DISABILITY COMMUNITY WHERE SIMPLY BEING ACCURATE ABOUT WHETHER OR NOT THIS IS A REAL RISK FOR ASD OR NOT IS NOT ENOUGH TO HELP PEOPLE MAKE AN INFORMED CHOICE ABOUT PREGNANCY UNLESS YOU ALSO INFORM DOCTORS ABOUT LIFESPAN QUALITY OF LIFE, SERVICES AVAILABLE, EXAMPLES 6 PEOPLE THROUGHOUT THE LIFESPAN, A FULL RANGE OF WHAT AUTISTIC PEOPLE FEEL AND WILL SAY. THERE IS A LOT OF -- AND WILL FRANKLY THIS HAPPENED IN THE DOWN'S SYNDROME COMMUNITY TOO. THIS HAPPENED IN THE DEAF COMMUNITY. THIS HAS HAPPENED IN THE DARRISM COMMUNICATED I. IT'S NOT ENOUGH TO JUST BE ABLE TO SAY LIKE, WE'RE GIVING PEOPLE AN ACCURATE INFORMATION ABOUT WHETHER OR NOT THEIR CHILD WILL HAVE A DISABILITY WITHOUT GETTING INTO A LARGER DISCUSSION ABOUT WHAT IT MEANS TO HAVE A DISABILITY. AND THAT IS NOT GOING TO BE NECESSARILY CAPTURED IN GENETIC STUDIES. AND IF WE ARE TALKING ABOUT THIS AS A SPECIFIC GOAL THAT WE WANT TO COMMIT OUR RESOURCEOOSE - I'M NOT SAYING PEOPLE SHOULDN'T HAVE INFORMATION BUT IF WE ARE TALKING ABOUT ONE OF THE THINGS THAT OUR COMMUNITY NEEDS MOST IS RESOURCES SPENT TOWARDS IDENTIFYING THESE GENE SO PEOPLE CAN HAVE PRENATAL COUNSELING, THEN THAT HAS IMPLICATIONS FOR WHETHER WE VALUE THAT -- I'M SORRY I'M LOSING MY TRAIN OF THOUGHT. IMPLICATIONS FOR WHAT WE ARE SAYING ABOUT PEOPLE ACROSS THE LIFESPAN. UP AND IT'S A REALLY SENSITIVE ISSUE. I DON'T THINK THAT WE CAN JUST BOIL IT DOWN TO SPEND A LOT OF MONEY AND GET THE SCIENCE AND TELL PARENTS AND LET THEM MAKE THEIR OWN DECISIONS. I THINK IT'S GOING TO BE A LOT MORE NUANCED THAN THAT. >> MAC TO CAP THIS OFF, AND I TAKE YOUR POINTS. I UNDERSTAND WHAT YOU'RE SAYING. CAN WE GO BACK TO THAT SENTENCE? SO THE PRIMARY PORTION OF THAT SENTENCE IS, UNDERSTAND THE CAUSAL RELATIONSHIP BETWEEN IDENTIFIED RISK GENES AND CLINICAL OUTCOMES. SO, I THINK THE GOAL IS TO KNOW IF YOU HAVE A PARTICULAR GENE MUTATION, WHAT IS THE LIKELIHOOD THAT YOU'LL HAVE A PARTICULAR OUTCOME, WHICH IS REALLY HARD TO SAY NOW. IT'S ALMOST IMPOSSIBLE TO SAY. AND SO, THAT REALLY IS -- UNTIL WE HAVE MORE CLARITY ON CAUSE AND EFFECT RELATIONSHIP, YOU DON'T REALLY KNOW HOW TO COMMUNICATE THAT TO THE FAMILIES I THINK DOES THAT MAKE SENSE TO YOU? SO, THAT IS WHERE WE ARE AIMING FOR AND THAT MAY BE A DECADE AWAY. I DON'T KNOW. ONCE WE HAVE THE CAUSE EFFECT RELATIONSHIP ESTABLISHED, THEN I THINK THERE IS SAY WHOLE ANOTHER DISCUSSION THAT YOU'RE ILLUMINATING ABOUT. DOES IT MAKE SENSE? DOES SOCIETY WANT US TO CONVEY THAT INFORMATION? BUT WE ARE NOT THERE YET AND I THINK IT IS REALLY IMPORTANT TO BE ABLE TO ESTABLISH THE CAUSE EFFECT RELATIONSHIP IF THERE IS ONE. >> MY POINT ONLY THAT IT IS ALREADY HAPPENING. I WANT YOU TO HAVE THAT REALITY CHECK THAT IT IS ALREADY HAPPENING AND IT'S NOT NECESSARILY ACCURATE. SO THAT'S WHERE I'M COMING FROM. >> WE ARE TALKING ABOUT A GOAL AND TRYING TO REACH CONSENSUS ON THIS GOAL. WHAT I'M HEARING IS THAT WE DO HAVE CONSENSUS WE PROBABLY WANT TO KNOW WAGENES DO. I DON'T THINK ANYONE IS OBJECTING TO WANTING TO KNOW HOW GENES EFFECT PEOPLE. WE WANT TO EDUCATE PROVIDERS ABOUT WHAT GENES DO SO THAT WHATEVER INFORMATION WE HAVE THEY WILL BE CONVEYING IT ACCURATE 3 INDIVIDUALS AND THEIR FAMILIES. I'M NOT SURE THAT WE CAN COME TO CONSENSUS ON WORDING ABOUT GENETIC COUNSELINGS IN PARTICULAR THAT WILL ADDRESS -- THAT WILL FULLY ADDRESS THE CONCERNS OF THE DISABILITY COMMUNITY AND THE CONCERNS OF PEOPLE WHO WANT TO IMPROVE GENETIC COUNSELING. AND I THINK THAT WE CAN PROBABLY JUST INCLUDE THAT AND SAY, WE WANT ACCURATE INFORMATION ON WHAT GENES DO AND LEAVE IT AT THAT. >> IT'S A COMPLICATED DISCUSSION. I WAS APPLYING THE SAME CRITERIA THAT DAVID APPLIED TO AN EARLIER ONE HERE. I THOUGHT IT WAS REALLY GOOD. WHAT DOES THAT TELL US TO DO? IT DOESN'T TELL US MUCH THAT CURRENTLY WE HAVE THE TECHNOLOGY TO DO UNLESS WE CAN -- WITH A CAUSAL RELATIONSHIP OR UNLESS WE CAN EXPERIMENTALLY MODIFY THE A SD RISK GENE AND A HUMAN AND LOOK AT CLINICAL OUTCOMES, THE REST OF THE DISCUSSION CAN BE PLACED ON HOLD. SO I THINK THERE IS A FEELING I'M GETTING TO SEE BOTH SIDES OF THIS WHERE IT IS MAYBE THIS ONE ISN'T READY FOR PRIME-TIME AND THE OTHER TWO DO A GREAT JOB OF FLUSHING OUT OBJECTIVE 1 FOR A YEAR AND THEN THIS THIRD ONE ISN'T THERE YET. >> PERHAPS WHAT WE COULD DO IS END AFTER CLINICAL OUTCOMES AND THE REST OF THAT MAYBE IF THERE IS SAY STATEMENT THERE IS STILL DISCUSSION ABOUT WHAT SHOULD HAPPEN IN TERMS OF GENETIC COUNCILLINGS AND PUT THAT SOMEWHERE IN THE TEXT AND NOT AS A PART OF THE OBJECTIVE. >> AND TAKE OUT CAUSAL. LIKE ONCE YOU START HAVING A CAUSAL -- A CLINICAL EFFECT AS AS WE POINTED OUT EPIGENETICS, YOU START HAVING FEEDBACK ON TO GENETICS. >> SAM: AND I WOULDN'T EVEN MIND -- THE FINAL SENTENCE OF THAT THING TOO, I WOULDN'T MIND -- I THINK I CAN UNDERSTAND PARENTAL CONCERNS AND ATTITUES. I THINK THAT IS IMPORTANT AS WELL. >> SO I WAS GOING TO MAKE THAT COMMENT BUT I DO WANT TO POINT OUT THE FACT THAT THIS IS ALSO THE OBJECTEDDIVE AND RISK FACTORS WHERE WE TALK ABOUT THE ENVIRONMENT. AND THERE IS BEGINNING TO BE DATA THAT SHOWS THAT THE OUTCOME IS GOING TO BE VERY DEPENDENT NOT ONLY ON THE GENES BUT ON THE EXPOSURES THAT OCCUR. AND THAT IS WHERE WE HAVE REAL OPPORTUNITIES IN THE FUTURE RATHER THAN CHANGING GENES FOR EXAMPLE. AND I THINK THAT THE SUGGESTION, I THINK THAT YOU MADE AND SAM THAT YOU MADE, WHICH IS GO BACK TO -- OBJECTIVE 1 IS JUST STOP AFTER CLINICAL OUTCOMES. I'M OKAY WITH A CAUSAL RELATIONSHIP BUT THEN UNDERSTAND PA RENT AM CONCERNS WHEN COMMUNICATING COMPLEX INFORMATION AND JUST LEAVE OUT THE COUNSELING AT THIS POINT. YOU SAID PEOPLE ARE GETTING COUNSELING NOW I'M CONCERNED ABOUT THE EVIDENCE BASE. AND THEN UNDERSANDING PARENTAL CONCERNS, APPRECIATES THE SITUATION FOR PROSPECTIVE PARENTS. SO I THINK THAT WOULD BE FINE. I DON'T EVEN -- >> CAN WE CHANGE CAUSAL TO COMPLEX. BECAUSE GENES DON'T CAUSE OUTCOMES. GENES CAUSE PROTEINS TO BE DEVELOPED WHICH CAUSE COMPLEX CASCADING -- >> DR. DANIELS: IT SOUNDS LIKE YOU HAVE COME UP WITH SOME PRETTY GOOD SOLUTIONS FOR THIS ONE. I THINK WE CAN MAKE THOSE CHANGES. STEWART DID YOU HAVE SOMETHING TO ADD? >> STEWART: JUST TO COMMENT, I THINK THAT THIS GOAL, THIS STATEMENT IS BROADER THAN WHAT HAS BEEN BROUGHT UP WITH REGARD TO PRENATAL GENETIC COUNSELING; BECAUSE THE MOST OF THE TIME THAT GENETIC TESTING IS DONE, THE CHILD ALREADY EXISTS AND IS HAVING SOME SYMPTOMS OF AUTISM SPECTRUM DISORDER AND HAS GENETIC TESTING DONE AND THERE WILL BE SOMETHING THAT COMES UP IN THE MICROARRAY OR SNP TEST OR WHOLE GENOME SEQUENCING. SO THE COUNSELING FOR THE FAMILY IS TO BEST UNDERSTAND THE RELATIONSHIP BETWEEN THE MUTATIONS OR THE VARIANTS THAT WERE IDENTIFIED AND WHAT MIGHT BE EXPECTED FOR THE CHILD'S PHENOTYPE AND ARE THERE INTERVENTIONS THAT CAN BE UTILIZED AND WE DON'T HAVE ENOUGH INFORMATION ABOUT THE RELATIONSHIPS BETWEEN THE VARIANTS OR THE MUTATIONS IN MANY CASES AND THE PHENOTYPIC OUTCOMES ONE MIGHT EXPECT. WHEN I READ THIS, I UNDERSTAND THE POINT THAT DIANA MADE AND WHAT IS BEING DONE IN THE PRENATAL REALM BUT I THINK IN THE PEDIATRIC CLINICAL GENETICS REALM IT IS REALLY THE GENETIC TESTING AND COUNSELING, THE FAMILY ABOUT WHAT DOES IT MEAN TO HAVE THIS VARIANT AND THERE IS NOT THE POPULATION OF PROVIDERS WHO BEST UNDERSTAND HOW TO DO THAT. SO I THINK THAT THIS IS REALLY LOOKING MORE AT THAT LANE AOPPOSED TO THE PRENATAL. ALTHOUGH PRENATAL SAY PART WE HAVE TO ACKNOWLEDGE EXISTS OUT THERE. I READ THIS QUITE DIFFERENTLY. >> SUES SUES DAVID. >> DAVID: I WAS INVOLVED IN THE FIRST GENETIC TESTING FOR -- DISEASE. AND THE KEY PART OF THAT WAS TO INCORPORATE REALLY INFORMED GENETIC COUNSELING. THAT WASN'T PRENATAL. THAT WAS PEOPLE TRYING TO GET ON WITH DIAGNOSIS. AND THE FEAR AMONG THE COMMUNITY WAS THAT THESE GENETIC INFORMATION WILL BE GIVEN WITHOUT COUNSELING. SO THE GUIDELINES FOR THE COUNSELING IS INCREDIBLY IMPORTANT IF GENETIC INFORMATION IS BEING RELEASED. I GET SAM'S POINT BUT I DON'T THINK THAT THE CONCERN STRONG ENOUGH TO TAKE OUT THAT GENETICS COUNSELING PIECE. I THINK YOU'RE ASSUMING SOMETHING THAT MAY NOT BE THE MAIN PICTURE AND THE COUNSELING IS ABSOLUTELY KEY. >> I WANT TO JUST STAY IS THAT BOTH OF THESE COMMENTS ARE REALLY IMPORTANT IN THE DISCUSSION IN THE WORK GROUP AND THE EXAMPLE THAT CAME UP WAS THE CHD8 MUTATION IS HIGHLY PENETRANT IN PRODUCING AUTISM. BUT THE REASON THAT THIS VERBIAGE WAS PUT IN IS BECAUSE A LOT OF THE INDIVIDUALS THAT HAVE MUTATION OF THAT GENE GO ON TO HAVE COLON CANCER. SO, HOW YOU EXPRESS THAT YOU HAVE MUTATION BECAUSE YOU COME IN AS A PATIENT WITH AUTISM, IS REALLY IMPORTANT FOR THE FAMILIES TO CONSIDER. THEIR MEDICAL MANAGEMENT. SO THEN YOU WANT TO HAVE PERSISTENT SURVEILLANCE. >> SO I APOLOGIZE BECAUSE I JUST CAME IN BUT I UNDERSTAND WE HAVE BEEN TALKING ABOUT THIS FOR 15 MINUTES. AM I RIGHT? AND I WANT TO -- I WANT TO REFOCUS A LITTLE BIT. WHAT WE ARE TRYING TO DO IS APPROVE THE LANGUAGE THAT IS THERE AND ALTHOUGH I APPRECIATE THE NUANCES OF THE DIFFICULTY OF WHAT WE'RE TALKING ABOUT, I THINK WE CAN ALL AGREE THAT UNDERSTANDING THE CAUSAL RELATIONSHIP BETWEEN GENES AND CLINICAL OUTCOMES AND SUING IT TO INFORM GUIDELINES IS SOMETHING IS THAT IS A VALUABLE THING TO DO. >> LARRY? >> LARRY: I THINK I BEAT YOU TO THE PUNCH THIS TIME. WITHOUT TAKING A POSITION ON COUNSELING OR NOT COUNSELING, I THINK THE POINT WAS MADE IS THAT IT'S BEING DONE AND EXEMPLARS THAT WERE GIVEN CRITICAL NATURE OF IT BEING DONE. AND I THINK I VIEW THE IACC AS IT'S SUPPOSED TO BE HELPING TO COORDINATE RESEARCH RELATED TO AUTISM. SO, RUNNING GRANTS MYSELF, THIS IS A PUBLIC STATEMENT TO FOLKS WHO ARE ARE APPLYING FOR GRANTS AS TO WHAT IS IMPORTANT. SO IF THERE IS A VALUE TO COUNSELING, WITHIN ESPECIALLY NIH, THEN EXCLUDING IT, I DON'T KNOW IF THAT IS THE MESSAGE THAT YOU WANT TO SEND BECAUSE YOU MIGHT ACTUALLY HAVE PEOPLE APPLY ING FOR GRANTS TO EXPLORE HOW TO BEST INTERACT WITH PARENTS WHETHER PRENATALLY ORB POSTNATALLY, BASED ON WHATEVER -- OR POSTNATALLY, BASED ON WHATEVER GENETIC FINDINGS HAPPEN TO BE FOUND. FROM AN ORGANIZATIONAL STANDPOINT AND FROM A FUNCTIONAL STAND POINTED OF WHAT THIS STRATEGIC PLAN IS SUPPOSED TO DO, I THINK WE NEED TO THINK ABOUT MESSAGING. >> JOSHUA GORDON: SO STRATEGIC PLAN FOR RESEARCH AND CARE. LET'S BE CLEAR. AND SERVICES. THIS IS INTERAGENCY AUTISM COORDINATING COMMITTING. I PROPOSE WE VOTE ON WHETHER THE LANGUAGE AS CURRENTLY WRITTEN IS ADEQUATE FOR THE COMMITTEE. DO I HAVE A MOTION? DO I HAVE A SECOND? ALL IN FAVOR. ALL AGAINST. ANYONE ON THE PHONE AGAINST? ANYONE ABSTAINING? MOTION CARRIES. MOVE ON PLEASE. BECAUSE WE HAVE A LOT MORE TO DO IN THE STRATEGIC PLAN. I DON'T MEAN TO MINIMIZE. I'M GLAD PEOPLE FELT LIKE THEY HAD THE OPPORTUNITY TO OBJECT BUT I THINK IT'S CLEAR THERE IS NOT A CONSENSUS. >> I THINK EVERYBODY AGREES. >> DR. DANIELS: I DIDN'T HEAR A LOT OF OTHER COMMENTS ON QUESTION 3. IS IT OKAY TO MOVE ON TO QUESTION 4? THERE WERE SOME FEEDBACK I RECEIVED ON QUESTION 4. TALKING ABOUT WANTING TO SEE MORE IN-DEPTH REVIEW OF PROGRESS ON DRUG TREATMENTS AND NEW OPPORTUNITIES ARISING FROM ADVANCES IN NEUROSCIENCE. DISCUSSION OF NOVEL THERAPIES FOR THE FUTURE SUCH AS STEM CELLS. A MORE ROBUST DISCUSSION ABOUT KEY ISSUES INVOLVED IN THINGS LIKE RTMS. A MORE ROBUST DISCUSSION OF COMBINATION THERAPIES WHICH WAS DISCUSSED QUITE A BIT IN THE WORKING GROUP CALLS BUT IT'S ONLY A SHORT PORTION OF THE TEXT. AND ENSURING THAT INTERVENTIONS INCLUDE THE WITHHOLD SPECTRUM AND DIVERSE POPULATION. WHICH WAS DISCUSSED BY THE GROUP BUT MAY HAVE GOTTEN LOST AS WEEDITTED DOWN SO WE COULD PUT THAT BACK IN. THOSE ARE SOME OF THE ITEMS THAT WERE IDENTIFIED FOR ME SO FAR. ARE THERE ADDITIONAL ITEMS OR DO WE NEED DISCUSSION ON SOME OF THE THINGS THAT I JUST MENTIONED >> IF I COULD QUICKLY SAY, ALL THOSE ITEMS I THINK WILL NEED SOME SUBSTANTIAL REVISION BECAUSE I THINK THE TEXT HAS WRITTEN AND DOES A GOOD JOB IN TERMS OF HANDLING BEHAVIOR THERAPIES. JUST IN TERMS OF WHAT THIS DOCUMENT IS SUPPOSED TO DO, IT IS SUPPOSED TO BE LEADING THE WAY FOR RESEARCH OVER THE NEXT 5 YEARS OR SO. YOU GET THE SENSE WHEN YOU READ THE DOCUMENT, THAT THERE AREN'T ANY PHARMACOLOGICAL TREATMENTS EAR THAT THEY ARE NOT GOING TO BE USED IN CONJUNCTION WITH BEHAVIOR THERAPIES. AND I THINK WE NEED TO HIGHLIGHT THE FACT THAT THIS IS SAY BIG GAP. SO WE NEED TO INVEST MORE RESOURCES AND TRYING TO FIGURE OUT HOW TO DO THIS. ONE EXAMPLE IS STRATIFICATION. A LOT OF DRUG TRIALS FAILED BECAUSE THEY ARE NOT ADEQUATELY STRATIFIED. EITHER THEY ARE STRATIFIED BASED ON ENDOPHENOTYPE OR GENETICS OR SOMETHING. BUT I THINK WE SHOULD HIGHLIGHT THE FACT THAT STRATIFICATION OF THE AUTISM POPULATION, EVERYBODY KNOWS IT IS HETEROGENEOUS BUT IT DOESN'T STEAM COME INTO PLAY WHEN PEOPLE ARE DESIGNING TREATMENT TRIALS OR DRUG TRIALS. SO ANYWAY, I'LL STOP THERE BECAUSE I KNOW WE ARE SHORT OF TIME. BUT I WOULD LIKE TO SEE SOME SUBSTANTIAL UMP TO THE BIOLOGY SIDE. >> AND QUI HAVE RESOURCES WITHIN THE COMMITTEE. JERRY DAWSON COULD HELP US WITH STEM CELLS. WE HAVE ROB ON THE COMMITTEE WHO COULD HELP US ON PHARMA AND MAYBE OTHERS HERE WHO WOULD LIKE TO CONTRIBUTE TO THAT. DAVID? >> DAVID: SO, PARALLELLING WITH WHAT DAVID SAID ON THE BEHAVIORAL INTERVENTION SIDE IS AN EXCELLENT WELL WRITTEN SUMMARY OF WHAT WE KNOW NOW. BUT I DON'T GET FROM THE SUMMARY WHAT THE GAPS ARE IN BEHAVIORAL RESEARCH. AND THIS PERHAPS BECAUSE OF THIS, THIS LEADING TO OBJECTIVES THAT ARE PRETTY -- NOT THAT THEY ARE VEILING, THEY ARE VERY BROAD. THE ONLY PLACE WHERE THEY ARE NOT BROAD IS IN TECHNOLOGIES. AND I FOUND IT WIERD THAT WE HAVE SO MANY GAPS IN BEHAVIORAL TREATMENT IN PHARMACOLOGICAL OR BIOLOGICAL TREATMENTS IN THE INTERSECTION THAT IS DO MEDICATIONS POTENTIATE LEARNING SO YOU WOULD SEE GREATER RESPONSE AND LONG-TERM RESPONSE TO BEHAVIORAL TREATMENT. AND I LIKE A LOT THE PIECE ON TREATMENT, MARKERS OF TREATMENT RESPONSE, MORE SOPHISTICATED MARKERS. THAT PART I GOT WAS IN SOME WAYS THE BEST PART OF THE SECTION. BUT IT DIDN'T MAKE IT -- THAT DOESN'T LINE UP WITH THE OBJECTIVES. I KNOW IT'S A HEAVY LIFT AND THE PROBABLY FOR FOR DISCUSSION NOW. I UNDERSTAND IF YOU FEEL LIKE WE NEED TO MOVE FORWARD. IF THIS IS GOING TO SET THE PROPOSED RESEARCH AGENDA FOR THE NEXT HANDFUL OF YEARS, I DON'T THINK WE DIRECTED PEOPLE ENOUGH. >> DR. DANIELS: SO PERHAPS IN THE REVISION PROCESS WE SHOULD RETHINK THE OBJECTIVES TO BE A LITTLE BIT MORE SPECIFIC ABOUT THE NEXT STEPS WHERE WE NEED TO GO. LEWIS. >> LEWIS: VERY BRIEFLY, MY OWN THINKING ABOUT THIS IS THAT I THINK WE NEED WAYS SIMILAR TO WHAT IS BEING DONE IN CANCER TO BASICALLY DIRECT DRUGS TO THE SPECIFIC AREAS WHERE THEY ARE NEEDED GIVEN THE COMPLEXITY OF THE BRAIN, I SEE IT AS A BIG GAP. >> JOSHUA GORDON: I WOULD ECHO THAT. >> THE ISSUE OF BIOMARKERS OF TREATMENT OUTCOME, I THINK IS INCREDIBLY IMPORTANT ONE AND I STILL THINK IT IS -- IT WAS A LOT OF ENTHUSIASM AND I UNDERSTAND THE ENTHUSIASM FOR STUDIES THAT HAVE BEEN DONE BUT THERE IS ONLY LIKE LESS THAN A HANDFUL OF STUDIES THAT LOOKED AT BIOLOGICAL BIOMARKERS OF TREATMENT OUTCOMES. IF THIS IS AN IMPORTANT AREA, I THINK IT HAS TO BE SEEN AS A REMAINING GAP SO THAT WE CAN PUT MORE EFFORT INTO IT. >> I THINK THIS FEED BACKED IS VERY HELPFUL. IT SEEMS LIKE THIS CHAPTER PROBABLY COULD USES MORE SUBSTANTIAL REVISION AND SO THAT IS BASED ON THESE COMMENTS UNLESS THERE IS ANYTHING ELSE WE HAVEN'T COVERED, COULD GUIDE US ON THOSE STEPS. SO LITTLE MOVE TO QUESTION 5. SERVICES. SO THE QUESTION NOW IS WHAT KINDS OF SERVICES AND SUPPORTS ARE NEEDED TO MAXIMIZE THE QUALITY OF LIFE FOR PEOPLE ON THE AUTISM SPECTRUM? AND WE HAVE GOT THREE OBJECTIVES DOES ANYONE HAVE SUBSTANTIVE COMMENTS ON THE CONTENT OF THIS CHAPTER? NOT HEARING ANY, IT SOUNDS LIKE THEN MAYBE PEOPLE FELT THIS RESONATED PRETTY WELL WITH THE THOUGHTS OF THE OVERALL COMMITTEE. THE REDUCING DISPARITIES IN EXCESS AND OUTCOMES COVERS A NUMBER OF DIFFERENT AREAS AND THAT HAS BEEN A HIGH PRIORITY FOR THE COMMITTEE OVER THE YEARS AND THIS HIGHLIGHTED IN OBJECTIVE 2. IF THERE ARE NO COMMENTS ON THIS SECTION, CAN WE MOVE TO QUESTION 6. LIFESPAN ISSUES. HOW CAN WE MEET THE NEEDS OF PEOPLE WITH ASD AS THEY PROGRESS INTO AND THROUGH ADULTHOOD? AND WE HAVE THREE OBJECTIVES HERE. ANY COMMENTS ON QUESTION 6? THE SECOND OBJECTIVES FOCUSES ON CO-OCCURRING PHYSICAL AND MENTAL HEALTH CONDITIONS. >> JOSHUA GORDON: GIVEN SOME OF THE COMMENTS TODAY, FROM THE PUBLIC AND FROM OUR SPEAKERS, MORE GENERAL AND PHYSICAL MENTAL HEALTH PROVIDERS IS IMPORTANT. >> DR. DANIELS: SUICIDALITY IS MENTIONED HERE. DAVID? >> DAVID: THIS IS A GREAT CHAPTER. THIS WAS SO THOROUGH AND COVERED SO MANY ISSUES AND I REALLY LIKED HOW THE OBJECTIVES EVER TIED VERY MUCH TO THE BACKGROUND. THE ONLY QUESTION I HAVE IN THE OBJECTIVE IS ABOUT THE NEED FOR A PREVALENT STUDY IN ADULTS WITH AUTISM IN ADULTS. UNLESS WE THINK THAT THE PREVALENCE HAS CHANGED OVER TIME, IT SEEMS LIKE THE BIGGER ISSUE IS IDENTIFYING THE ADULTS WITH AUTISM AND MAKING SURE THAT THEY HAVE THE SERVICES THEY NEED RATHER THAN CONDUCTING PREVALENT STUDY WHICH IS REALLY 22 VERY DIFFERENT STUDIES. >> SAM: I LOBBIED FOR THE INCLUSION OF THE PREVALENCE STUDY AND I DO NOT THINK THAT THE INCIDENCE OF AUTISM HAS CHANGED ORPHAN TIME, HOWEVER IT IS A LIVE DEBATE. IT'S SOMETHING THAT PEOPLE HAVE BEEN ARGUING OVER QUITE A LOT. AND IT IS THEREFORE SOMETHING BEE NEED A STUDY ON IN ORDER TO SETTLE THAT QUESTION. IT IS ALSO SOMETHING THAT POLICY ADVOCATES ENDS UP NEEDING IN ORDER TO IDENTIFY THE SCALE OF THE NEED FOR SERVICES DIRECTED AT AUTISTIC ADULTS AND WE NEED TO KNOW EXACTLY HOW MANY PEOPLE THERE ARE OUT THERE. I AGREE WE NEED STUDIES ON IDENTIFYING AUTISTIC ADULTS AND DEVELOPING BETTER MEASURES THAT WILL ENABLE CLINICIANS TO IDENTIFY AUTISTIC ADULTS. I THINK WE NEED BOTH. >> DR. DANIELS: I THINK THE IDENTIFICATION OF AUTISTIC ADULTS IS IN THERE BUT WE COULD GO BACK AND CHECK JUST TO MAKING SURE WE CAPTURED EVERYTHING YOU MENTIONED. ANYTHING ELSE IN QUESTION 6. NOT HEARING ANY I WILL MOVE TO QUESTION 7. INFRASTRUCTURE SURVEILLANCE WORKFORCE NEEDS AND OUTREACH. SO WE HAVE -- BECAUSE THERE ARE FOUR TOPICS THERE, WEED HAVE FOUR DIFFERENT OBJECTIVES. EACH TO COVER ONE OF THOSE TOPICS AND THE QUESTION IS, HOW DO WE CONTINUE TO BUILD, EXPAND AND ENHANCE THE INFRASTRUCTURE SYSTEM TO MEET THE NEEDS OF THE AUTISM COMMUNITY? WERE THERE ANY COMMENTS ON THIS SECTION? THIS IS WHERE SURVEILLANCE TO UNDERSTAND THE NEEDS ACROSS THE LIFESPAN IS MENTIONED SPECIFIC ALLY. AND A DISCUSSION FOR A NEED FOR SUFVEILANCE STUDIES THAT COVER THE ADULT POPULATION. NOT HEARING ANY HERE, IF IT'S OKAY, WE'LL MOVE TO THE NEXT THING WHICH IS JUST VERY QUICKLY, YOU ALREADY APPROVED THE EFFORT STATEMENT. CHECKING BACK TO MAKE SURE THERE IS NOTHING CHANGED IN THAT. WE WENT OVER TO IN JANUARY AND MADE EDITH SO I THINK THAT IS FINE UNLESS THERE IS ANYTHING ELSE. THEN I'M GOING TO MOVE TO THE ASD RESEARCH BUDGET RECOMMENDATION AND SO, AS THIS IS AN AREA WHERE WE WILL NEED A LITTLE BIT OF DISCUSSION. WE TALKED ABOUT THIS AT THE LAST TWO MEETINGS THAT THE STRATEGIC PLAN IS REQUIRED TO HAVE A BUDGET RECOMMENDATION ATTACHED TO IT. WE DISCUSSED THAT THERE WOULD BE A SEPARATE RESEARCH BUDGET RECOMMENDATION ON SERVICES BUDGET RECOMMENDATION BUT AT THIS POINT IN TIME, WE ARE NOT READY TO MAKE THE SERVICES BUDGET RECOMMENDATION BECAUSE WE HAVE DISCUSSED WITH DAVID MENDEL DOING A STUDY AND OUR OFFICE HAS BEEN IN COMMUNICATION WITH HIM ABOUT GETTING HIM THE DATA AND RESOURCES THAT WOULD BE NEEDED TO CONDUCT A STUDY THAT WOULD GIVE US THE INFORMATION TO DO THIS. SO THAT WOULD BE FOR FUTURE STRATEGIC PLAN UPDATE N THIS ONE WE HAVE THE INFORMATION TO BE ABLE TO MAKE OUR RESEARCH BUDGET RECOMMENDATION. SO, THE STAFF PUT TOGETHER A SET OF SLIDES TO TRY TO HELP US GO THROUGH THIS. AND HOPEFULLY MAKE A DECISION ON HOW WE WANT TO DO THE BUDGET RECOMMENDATION. I'M NOT GOING TO TAKE THE TIME TO GO THROUGH THIS BUT PART OF THE RATIONAL BEHIND SOME OF THIS IS TALKING ABOUT SOME OF THE COSTS OF AUTISM, INCLUDING LOTS OF PRODUCTIVITY, DUE TO THINGS LIKE UNDER EMPLOYMENT AND THE FAMILY CAREGIVERS NEEDING TO STAY OUT OF EMPLOYMENT TO HELP WITH FAMILY MEMBERS. SO, WON'T GO INTO THAT IN GREAT DETAIL. THIS IS RATIONAL AND BACKGROUND WE PUT IN THE NARRATIVE. SO WE WANTED TO GO BACK THROUGH HISTORICAL DATA SINCE WE HAVE BEEN COLLECTING DATA ON RESEARCH FUNDED BY GOVERNMENT AND NON GOVERNMENT FUNDERS SINCE IS 2008. AND THE FIRST FIGURE HERE SHOWS COMBINED FEDERAL AND PRIVATE AUTISM RESEARCH FUNDING AND WE ALSO TRACK THIS IN CONSTANT 2008 DOLLARS TO SEE HOW MUCH PURCHASING POWER WE LOST OVER TIME. AND SO WHEN ADJUSTED FOR INFLATION BY USING 2008 DOLLARS, THE GROWTH AND COMBINED RESEARCH BUDGET IS 31% IN ANNUAL GROWTH RATE OF 4.5%. COMPARED TO AN ANNUAL GROWTH RATE OF 7.7% IF YOU'RE TRACKERRING IN REGULAR DOLLARS. SO, THIS INFORMATION HELPS US UNDERSTAND WHERE WE HAVE BEEN LOSING SOME OF OUR PURCHASING POWER. YOU HAVE OBJECTIVES NOW. I'M NOT GOING TO GO THROUGH THIS. BUT WE HAVE AN IDEA FROM THE IMPORTANT AREAS WHERE WE NEED TO INVEST FOR THE FUTURE OF AUTISM RESEARCH. SO, THE OFFICE TAKING THIS DATA CAME UP WITH FOUR OPTIONS FOR HOW WE COULD PROJECT AN ESTIMATED BUDGET. WE COULD DO OPTION 1 WHICH WOULD BE TO MAINTAIN A STEADY RATE OF GROWTH IN THE RESEARCH BUDGET BASED ON HISTORICAL DATA. WE COULD OPTION 2, RECOUP DOLLARS THAT HAVE BEEN LOST TO INFLATION SINCE 2008. OPTION 3 IS TO RETURN TO THE HIS STORE CALL HIGH OF 2010 WHICH WAS DUE TO THE AMERICAN RECOVERY AND REINVESTMENT ACT. AND OPTION 4 IS TO SIGNIFICANTLY GROW THE AUTISM RESEARCH BUDGET. SO WE HAVE FOUR SLIDES TO GIVE YOU AN IDEA OF WHAT THIS MIGHT LOOK LIKE AND I'M GOING HAVE KAREN FROM OUR OFFICE TALK THROUGH THESE. >> DR. MOWRER: I'LL TRY TO BE BRIEF. THESE ARE EXAMPLES OF EACH OF THOSE ONES. THIS IS -- ONES WHAT IT WOULD LOOK LIKE IF YOU EXTRAPOLATED ANNUAL RATE OF GROWTH WE SAW BETWEEN 2008 TO 2015 INTO THE FUTURE WHICH IS A 7.7% ANNUAL GROWTH RATE AND EXTRAPOLATED THAT OUT TO 2020. BUT WE COULD FAULK WHAT YEAR WE MIGHT WANT TO DO THAT. -- WE COULD TALK ABOUT: THIS IS WHAT IT WOULD LOOK LIKE TO ADJUST FOR THE LOSS OF PURPOSING POWER DUE TO INFLATION. SO TO NEGATE THE LOSS OF PURCHASING POWER AT THE 2015 FUNDING LEVEL, YOU WOULD NEED APPROXIMATELY 402 MILLION TO BE EQUIVALENT TO THAT 343 MILT YON IN 2008 CONSTANT DOLLARS. AND AGAIN, WHAT YEAR YOU WOULD WANT TO TARGET TO REACH THAT COULD BE A POINT OF DISCUSSION. YOU CAN SEE IT ALSO SOMEWHAT NEAR THE AMOUNT OF THE 2010 HIGH OF 408 MILLION. AND THEN THIS IS THE SCENARIO OF RETURNING TO THE 2010 PEAK FUNDING LEVEL. AGAIN, THAT WAS REACHED BECAUSE OF THE SUB MEANT REFUNDS PROVIDED BY -- SUPPLEMENTARY FUNDS. -- THIS IS AN EXAMPLE. WE HAVE SHOWN WHAT A STEADY RATE OF INCREASE WOULD TAKE TO REACH IS THAT LEVEL AND THAT IS A 3.6% INCREASE PER YEAR IF YOU GO TO 2020 TO REACH THAT. AND THEN THE IDEA IS IFFY WOO USED THIS MODEL, YOU COULD REFER BACK TO ARA AND HOW A LOT OF THOSE PROJECTS WERE POISED TO BE FUNDED WHEN THAT MONEY WAS AVAILABLE AND POINT TO SOME OF THE OUTCOMES THAT CAME FROM THAT FUNDING AS AN EXAMPLE OF IF A NEW INFUSION OF FUNDING WAS PROVIDED, HOW THE FIELD IS SIMILARLY POSITIONED TO CAPITALIZE ON THAT INVESTMENT. AND THEN THIS IS THE FOURTH OPTION WHERE WE LOOK AT THE IDEA OF DOUBLING THE BUDGET AND PICKING A TIMEFRAME FOR DOING THAT. THIS AGAIN IS AN EXAMPLE GOING OUT TO 2020 AND TO DOUBLE THE BUDGET BY THEN THAT WOULD BE A 14.85% INCREASE PER YEAR TO REACH THAT. >> DR. DANIELS: THESE ARE THE 4 OPTIONS WE HAVE COME UP WITH AS A WAY TO DO THIS WORKING BACK FROM HISTORICAL DATA. LEWIS? >> LEWIS: I HAD A QUESTION. IS IT POSSIBLE TO DO A WELL FIFTH OPTION TO CALCULATE WITH THE INFLATION RATE FOR THE REAL COST OF DOING SCIENCE? I MEAN WE KNOW THAT THE EQUIPMENT THAT IS NEEDED TO DO STATE-OF-THE-ART SCIENCE IS CONSTANTLY EVOLVED AND BECOME MORE EXPENSIVE AND MY IMPRESSION IS FOR THAT AND SOME OTHER REASONS THAT THE RATE OF INFLATION IN SCIENCE SOMEWHAT GREATER THAN -- >> WE USED FOR THE ADJUSTMENT FOR CONSTANT VERSUS ACTUAL DOLLARS OF BIRD PIE, THE BIOMEDICAL RESEARCH AND DEVELOPMENT INDEX WHICH IS INFLATION FOR RESEARCH SPECIFICALLY THAT NIH USES. >> JOHN? >> CAN YOU EXPLAIN TO ME THE BUDGET CHOICES YOU JUST SHOWED ALIGN WITH THE STATED DESIRES THE PRESIDENT CUT THE BUDGET OF NIH AND MY ABSOLUTE ABSENCE OF KNOWLEDGE ABOUT HOW OUR CONGRESS AND SENATE VIEWS WHAT WE SHOULD BE BUDGETING FOR? I GUESS -- I HEAR SO MANY DIFFERENT THINGS. I DON'T KNOW WHAT TO MAKE OF THAT. >> DR. DANIELS: SO, IN TERMS OF THE PROCESS OF THE IACC, YOUR JOB IS TO LOOK AT THE OPPORTUNITIES FOR RESEARCH AND DECIDE IF YOU WERE GOING TO BE PROJECTING A BUDGET RECOMMENDATION WHAT THAT WOULD BE AND SO IT'S INDEPENDENT OF WHAT GOVERNMENT BODIES MIGHT BE DOING OR WHAT THE CONGRESS MAY END UP DOING IN TERMS OF APPROPRIATIONS SO YOU CAN MAKE IT -- >> LEWIS: SO WE HAVE A REPORT TO CONGRESS, WE WOULD GIVE THEM THESE FOUR CHOICES OR WOULD WE CHOOSE -- >> DR. DANIELS: YOU WOULD CHOOSE SOMETHING OR WE WOULD HAVE TO HAVE A SCENARIO TO SUGGEST THIS WOULD BE A BUDGET RECOMMENDATION. IN THE PAST, STRATEGIC PLAN, WE HAD AN INDIVIDUAL BUDGET RECOMMENDATION FOR EVERY OBJECTIVE BUT IT IS NOW SO BROAD IT MAKES IT DIFFICULT TO DO THAT. THAT'S WHY WE DECIDED TO GO WITH SOMETHING LOOKING AT THE ENTIRE RESEARCH BUDGET AS A WHOLE. >> LEWIS: DO YOU FOLKS, AS NIH INSIDERS, DO YOU KNOW WHAT THE RIGHT ANSWER TO THIS IS WITH GOVERNMENT NOW? OR IS IT ENTIRELY UP TO US? >> WE ARE AN INDEPENDENT ADVISORY BODY. YOU HAVE A CHANCE TO THINK ABOUT THIS AND DEBATE THE MERITS AND COME UP WITH YOUR SCENARIO. >> THEY WON'T NECESSARILY LISTEN TO US BUT WHAT WE HAVE TO DO IS JUST MAKE A RECOMMENDATION. >> DR. DANIELS: AND THIS WILL BE SOMETHING IS THAT FUNDERS READ THAT CONGRESS WILL READ AND TAKE INTO CONSIDERATION WITH ALL THE OTHER CONSIDERATIONS THEY NEED TO ACCOUNT FOR. LEWIS? >> LEWIS: I'LL JUST SAY IN THAT CONTEXT, I THINK IT'S CRAZY NOT TO BE ASPIRATIONAL. THE OPPORTUNITIES IN RESEARCH ARE VERY HIGH. IF YOU DON'T HAVE -- WE CERTAINLY WON'T GET THE FUNDING THAT ONE EXPECTS BUT AT LEAST MAKE THE CASE TO CONSIDER THE HUGE NUMBER OF OPPORTUNITIES IN NEUROSCIENCE. >> I THINK IT'S FAIR TO SAY IF WE DID EVERYTHING IN THIS PLAN, THE COST WOULD NOT BE 685 MILLION DOLLARS A YEAR. IT WOULD BE TWO, 3, 4, 5 BILLION DOLLARS A YEAR. AND I THINK -- I MEAN, THAT'S A BIG RANGE BECAUSE WE OBVIOUSLY HAVE NOT DONE THE CALCULATION AND IT WOULD BE VERY CHALLENGING TO DO THE CALCULATION BUT IT WOULD BE FAIR TO SAY IT WOULD BE HIGHER THAN 685 MILLION. THAT STATEMENT NEEDS TO BE MADE FOR TWO REASONS. ONE, WE DON'T WANT TO GIVE THE IMPRESSION THAT WHATEVER NUMBER WE PICKED, THAT THAT IS ENOUGH TO DO EVERYTHING IN THE PLAN. BECAUSE IT'S NOT. AND NUMBER 2, IF WE TELL THEM, THIS IS HOW MUCH YOU NEED AND WE DON'T PUT THAT IN THERE, THEN THEY WILL EXPECT US TO DO IT IF THEY GIVE IT TO US OR THEY WILL EXPECT US TO DO HALF OF IT IF THEY GIVE HALF OF IT TO US. THAT IS AN IMPORTANT THING I'D PUT IN THERE. >> SO FOR THOSE OF US WHO ARE FEDERAL MEMBERS, WE CAN'T TELL CONGRESS WHAT TO DO BUT THE COMMITTEE CAN. BUT I THINK IT IS VERY IMPORTANT TO UNDERSTAND THAT IN THE LAST FEW FEDERAL BUDGETS WHICH HAVE COME FROM CONGRESS, NIH RECEIVED SIGNIFICANT INCREASES BUT THEY HAVE BEEN LARGELY SET FOR SPECIFIC AREAS, WHICH IN THE PAST, WAS SOMETHING THAT NIH DIDN'T WANT TO HAPPEN. BUT IN FACT, THAT IS WHAT IS HAPPENING. SO THE BRAIN GETS SPECIFIC FUNDING. ALZHEIMER'S GETS SPECIFIC FUNDING. PREDICTION MEDICINE GETS SPECIFIC FUNDING AND IF THIS GROUP SHOULD DECIDE TO RECOMMEND A LARGE NUMBER, IT'S POSSIBLE THAT SOMEONE IN CONGRESS WILL AGREE THAT SHOULD BE SOME SPECIFIC FUNDING. >> DR. DANIELS: LARRY? >> LARRY: I WANT TO REMIND FOLKS WHEN OUR ASSISTANT SECRETARY AND THE GAO INSPECTOR WENT BEFORE A CONGRESSIONAL COMMITTEE, AND TOM WAS BEING BADGERED ABOUT DUPLICATIVE RESOURCES IN THIS COMMITTEE THAT IS FAMILIAR WITH IT, ONE OF THE THINGS HE DID WAS HE TURNED AROUND TO THEM AND SAID, HOW MUCH ARE YOU SPENDING ON ALZHEIMER'S AND AIDS -- AND YOU'RE TALKING ABOUT 1-6TH BILLS A YEAR NOW AND THEY DIDN'T KNOW. -- 1-60 BILLS. I'M NOT FROM NIH BUT IT WAS IN THE BILLIONS. I WOULD AGREE WITH DR. GORDON. >> JOSHUA GORDON: I CAN GIVE YOU SOME OF THOSE NUMBERS. THE EXPENDITURES ON AIDS ARE ABOUT 3 BILLION PER YEAR. THE EXPENDITURES ON ALZHEIMER'S ARE NOW 1.2 AND ARE PROJECTED -- RIGHT? TO GO UP TO 1.6 IF THE HOUSE BUDGET IS PASSED. >> AND IT'S LIKELY IT MIGHT GO HIGHER. >> JOSHUA GORDON: SO THAT IS JUST FOR REFERENCE PER YEAR. >> SO I WOULD AGREE WITH LEWIS THAT ASPIRATIONAL IS NOT A BAD IDEA. I ALSO WILL SAY ON THE OTHER SIDE FROM WHAT I HEARD IS THAT THEY ARE TALKING ABOUT PUTTING LIMITS ON INDIRECT COSTS AS PART OF RESEARCH GRANTS. >> SO IN THE HOUSE BILL THAT IS EXPLICITLY BLOCKED. THE HOUSE SAYS, YOU WILL NOT CUT INDIRECT COSTS. >> AT THIS POINT. >> DOLLARS, DOLLAR AMOUNTS ARE VERY RELATIVE. IF IT'S A 25% INDIRECT VERSUS 50% INDIRECT, THE MONEY STRETCHES A LOT FURTHERED AND I JUST RAISED THAT JUST AS SOMETHING TO -- YOU SAY WILL IT WILL NERVE HAPPEN. >> BUT CUTTING IN DIRECTS WILL NOT CUT THE COST OF RESEARCH T WILL JUST MEAN IT HAS TO COME FROM DIRECTS. >> I UNDERSTAND THAT. BUT I'M JUST SAYING THAT WHEN YOU REPRESENT DOLLARS IT'S ACTUAL DOLLARS. >> JOSHUA GORDON: I WANT TO FOCUS THE DISCUSSION BACK. WE HAVE TO PICK A MODEL. BUT JOHN SAY SOMETHING. KEEP IT BRIEF. THAT WOULD BE GREATS. >> JOHN: IF I'M UNDERSTANDING YOU ALL CORRECTLY, IT SOUNDS TO ME LIKE OUR COMMITTEE SHOULD MAKER A STATEMENT WE CHANGED OUR ASPIRATIONAL GOAL WITH THIS REVISION OF THE STRATEGIC PLAN IN RECOGNITION OF THE FACT THAT WE NEED THE BASIC SCIENCE AND 2, THE DELIVERY OF BENEFITS TO THE COMMUNITY NOW AND WE DO NOT HAVE THE FUNDING TO ACCOMPLISH THAT EXPANDED GOAL. AND THAT IS A REASON THAT WE NEED SPECIFIC TARGETED FUNDING WELL OVER AND ABOVE WHAT WE PREVIOUSLY HAVE HAD BECAUSE THAT IS A CHANGE IN THIS VERSION OF THE PLAN. AND IF I'M HEARING YOU RIGHT, WE NEED TO MAKE OUR SPECIFIC WISH CLEAR SO THE CONGRESS OR THE SENATE HAS A SHOT AT GIVING US WHAT WE NEED. THAT'S HOW I'M HEARING YOU ALL. >> THANK YOU, JOHN. SO, LET'S JUST SAY THERE ARE FOUR ONES ON THE TABLE. I DON'T MEAN TO DISTINGUISH ANOTHER ONE BUT THERE ARE FOUR ONES SYSTEM ON THE TABLE RIGHT NOW THAT SUSAN PUT FORTH. THIS BEING I THINK THE MOST AMBITIOUS. DOUBLING IN FIVE YEARS. AND THE LEAST AMBITIOUS BEING THE CONTINUE THE CURRENT RATE OF GROWTH. CORRECT? SO, I'D LIKE NOW THE DISCUSSION TO BE CONFINED TO EITHER A CONCRETE SUGGESTION OF SOME OTHER METHOD OR ARGUMENT ABOUT ONE OF THE FOUR METHODS THAT WE DISCUSSED. ED. >> LEWIS: I'M SUGGESTING HER MOST ASPIRATIONAL PLAN JUST DOUBLING IN 5 YEARS -- >> JOSHUA GORDON: I SEE PEOPLE NODDING. DO WE HAVE A MOTION TO APPROVE. >> DR. DANIELS: DO YOU HAVE A TIMEFRAME? WE ARBITRARILY PICKED 5 YEARS. BUT IT COULD BE 4 YEARS. WE ALSO STARTED WITH 2015 JUST BECAUSE WE HAVE THE 2015 DATEDDA. WE COULD START IN 2016 BUT GOAT A DOUBLING FASTER DEPENDING ON. >> LEWIS: WHY DON'T WE ASK FOR THREE YEARS IN THIS PRESIDENT'S TERM? THAT MAKES SENSE TO ME. >> JOSHUA GORDON: LEWIS? >> LEWIS: I WOULD RECOMMEND THE DOUBLING AND RECOMMEND FIVE YEARS FROM SAY LAST YEAR. THE TRUTH IS THERE IS NO POINT -- >> JOSHUA GORDON: THAT SILENT CURRENT PLAN. FIVE YEARS FROM LAST YEAR. >> I STRONGLY WOULD SUPPORT THAT. >> JOSHUA GORDON: SO I HAD A MOTION. IS THERE A SECOND? ALL IN FAVOR? ANY OPPOSED? >> I WOULD TRIPLE -- [ LAUGHS ] >> I WOULD. WE ARE MAKING UP -- WE ARE MAKING UP NUMBERS. DOUBLE SEEMS LIKE A GREAT IDEA. MAYBE IT HAS MORE FACE VALIDITY THAN TRIPLE BUT TRIPLE HAS MORE FACE VALIDITY THAN QUADRUPLE. I THINK THE CONCEPT OF -- SOMETIMES YOU GET WHAT YOU ASK FOR. YOU CAN ALWAYS NOT GET IT OR E-MAIL THERE IS -- SOMEONE SAYS, THERE IS A MIDDLE GROUND. THEY ASK FOR TRIPLE. WE'LL GIVE THEM 1 1/2. THAT'S MY -- >> JOSHUA GORDON: SINCE WE HAD ANOTHER ARGUMENT. LET'S JUST REDO THE VOTE, PLEASE. ALL IN FAVOR, RAISE YOUR HAND. SORRY. WE ARE VOTING ON THE CURRENT PLAN. THE DOUBLING. IF IT FAILS, WE WILL FIGURE OUT ANOTHER ONE. I'M PERSONALLY GOING TOED ABSTAIN BECAUSE PERSONALLY A LOT OF THAT FUNDING WILL COME TO ME. YOU'RE COMMITTEE MEMBERS. YOU CAN MAKE UP THAT DECISION. I'M GOING TO ABSTAIN. BUT I THINK -- YOU V. TO MAKE UP YOUR OWN MINDS BUT WE ARE MEMBERS OF THE COMMITTEE. >> [ OFF MICROPHONE ] >> JOSHUA GORDON: WE ARE VOTING FO THIS PROPOSAL CURRENTLY. LARRY MADE A MORE AMBITIOUS PROPOSAL. SO, I'D LIKE TO SEE ALL IN FAVOR OF THE DOUBLING IN FIVE YEARS FROM 2015 RAISE YOUR HAND, PLEASE. ALL AGAINST. EVERYONE ELSE SHOULD BE THEN ABSTAINING? >> ONCE YOU POINTED OUT ABOUT FEDERAL EMPLOYEES -- >> JOSHUA GORDON: I DON'T THINK THIS CAN -- >> [ OFF MICROPHONE ] >> JOSHUA GORDON: I DON'T THINK WE CAN PASS IT. >> MAYBE WE SHOULDN'T VOTE ON THE AMBITIOUS PROPOSAL FIRST. >> THE TRIPLING? >> CAN I JUST SAY IN TERMS OF FEDERAL EMPLOYEES ME BEING ONE OF THEM, I DON'T THINK -- WE ARE NOT ALLOWED TO RECOMMEND TO CONGRESS -- AND THIS IS AN INDEPENDENT BODY'S GENERAL, HERE IS WHAT WE THINK WOULD DO THE JOB. YOU DISAGREE? THEN I'LL ABSTAIN TOO. >> JOSHUA GORDON: SO. LET'S BE VERY CLEAR. WE AS A COMMITTEE, INCLUDING THE MEMBERS OF THE COMMITTEE WHO ARE FEDERAL AGENCY REPRESENTATIVES, HAVE BEEN ASKED TO TELL THEM HOW MUCH THIS WILL COST. >> WHEN YOU'RE VOTING ON THIS, THIS IS A PARTS OF THE OVER ALL STRATEGIC PLAN. IT'S NOT LIKE THERE IS WHEN THE STRATEGIC PLAN COMES OUT THERE WILL BE A LIST OF NAMES OF WHO VOTED FOR THIS PARTICULAR SECTION. IT WILL BE PART OF THE WHOLA AND FINE FOR PEOPLE TO ABSTAIN. FEDERAL MEMBERS ARE PERMITTED TO VOTE BUT YOUR ALSO PERMITTED TO ABSTAIN IF YOU FEEL LIKE YOU NEED TO AND KEEP IN MIND WE ALSO HAVE SEVERAL PUBLIC MEMBERS WHO ARE MISSING TODAY. >> LET ME JUST THROW OUT A POINT --ED. [ OFF MICROPHONE ] >> IN PREVIOUS QUESTIONS LIKE THISY WITH WENT TO THE LEGAL PEOPLE AT NIH TO ASK THIS QUESTION. AND THE OFFICIAL ANSWER IS THAT POINTING TO APHAKIA COMMITTEE ARE YOU -- YOU CAN EXERCISE YOUR RIGHT AS AN INDIVIDUAL AND VOTE YOUR CONSCIENCE. >> DR. DANIELS: THAT'S RIGHT. >> WALTER: SO IT DOESN'T OFFICIALLY GO FOR ADVOCACY. >> AND WE ARE NOT OFFICIALLY REPRESENTING OUR INSTITUTES. >> ISN'T IT TRUE THAT ALL OF US WHO ARE NOT FEDERAL EMPLOYEES WOULD WISH FOR THE MAXIMUM ALLOCATION OF FEDERAL DOLLARS TO ADDRESS OUR CONCERNS IN AUTISM? CAN'T WE GET AGREEMENT WITH THAT AROUND THE TABLE? AND IF THAT IS TRUE, DON'T WE WANT TO VOTE AS THE INDEPENDENT PART OF THIS FOR THE LARGEST THING THAT SUSAN HAS PUT ON THE TABLE? CAN'T WE MOVE AHEAD WITH THAT? I GUESS I SENSE THAT WE ARE STUCK WITH A PROCEDURAL THING WHERE THE FOLKS WE DEPEND ON AT THE END OF THE TABLE CAN'T SPEAK UP BECAUSE OF THEIR FEDERAL STATUS. BUT WE WANT THE BIGGEST THING WE CAN GET. THAT'S TO ME -- DO ANY OF YOU NOT WANT THAT WHO IS INDEPENDENT? YOU ALL DO. SO, TELL US HOW TO DO THAT. [ LAUGHS ] >> JOSHUA GORDON: I THINK SHE IS GIVEN YOU FOUR DIFFERENT PLANS. >> DR. DANIELS: THESE ARE BASED ON HISTORICAL DATA. THEY AREN'T JUST PIE IN THE SKY. THERE ARE SOME FACTS TO BACK SOME OF THIS UP. BUT WE JUST NEED TO MAKE A CHOICE OR OFFER ALTERNATIVE. >> MAY I MAKE A MOTION. SUSAN HAS GIVEN US FOUR THOUGHT-THROUGH PLANS. SHE CANNOT SAY MORE BUT THOSE ARE THOUGHT-THROUGH PLANS BASED ON OUR COLLECTIVE WORK. MAY I SUGGEST THAT WE PUT OUR VOTES FOR THE LARGEST OF THOSE PLANS. OKAY. >> JOSHUA GORDON: ALL IN FAVOR, RAISE YOUR HANDS. ANY OPPOSED? WE ARE IN FAVOR. >> DR. DANIELS: ANYONE ON THE PHONE? >> JOSHUA GORDON: ALL OPPOSED. >> SO WE HAVE DONE IT. >> JOSHUA GORDON: ANY ABSTENTIONS? OKAY. >> JUST FOR THE RECORD, BECAUSE AND THERE ARE PEOPLE WHO MAY BE ON THE PHONE, I THINK ALL OF THE FEDERAL FOLKS BELIEVE THAT WITH THE HIGHEST MODEL HERE THAT WE COULD MAKE VERY GOOD USE OF THE MONEY. LET'S JUST STATE THAT. >> I DON'T DOUBT IT FOR A SECOND. ABSOLUTELY NO PROBLEM OF CONSCIENCE ASKING FOR MONEY. >> JOSHUA GORDON: SO WE WILL PUT FORTH A BUDGET RECOMMENDATION THAT WILL BE THIS MODEL. IT WILL HAVE THE FOLLOWING TWO STATEMENTS APPENDED TO IT. ONE, THAT THIS IS NOT ENOUGH MONEY TO DO EVERYTHING IN THE PROGRAM BUT IT IS A REASONABLE AND AGGRESSIVE START AS I THINK WALTZER SAID IT BETTER THAN I. SO HOPEFULLY SOMEONE TOOK NOTES WHEN HE SAID IT. THAT WE CAN SPEND WISELY AND EFFICIENTLY OVER THOSE 5 YEARS. >> I'M HAPPY TO GO ON RECORD AS BEING A PERSON WHO MADE THE MOTION AND I'M NOT A RECIPIENT OF THE MONEY. SO I GOT NO DOG IN THE HUT OTHER THAN BEING AUTISTIC. >> DR. DANIELS: SO THAT WAS THE BIG ONE FOR THE STRATEGIC PLAN. THESE ARE SOME OTHER QUESTIONS THAT I HAD FOR YOU REGARDING ADDITIONAL FUNDING WHICH YOU DON'T REALLY HAVE TO ANSWER. JUST STICK WITH THE BUDGET RECOMMENDATION AND LET IT BE. BUT LET ME JUST POSE IT. GIVEN THE CURRENT DISTRIBUTION OF FUNDING ACROSS THE STRATEGIC PLAN, I DIDN'T KNOW IF YOU WANTED TO THINK ABOUT THE BALANCE OF WHAT IS IN THE STRATEGIC PLAN AND SHOULD ADDITIONAL MONEY COME TO THE AUTISM BUDGET, SHOULD IT BE INNOCENT A WAY SO AS TO SHIFT THE BALANCE? AND SO YOU'RE FREE TO SAY, WE DON'T WANT TO TALK ABOUT THAT ORAL IF YOU THINK THAT YOU NEED TO MAKE ANY STATEMENTS, WE CAN INCLUDE IT IN THE NARRATIVE. >> [ OFF MICROPHONE ] >> I THINK IT SHOULD THEFT LIFESPAN AND SERVICES -- SHIFT -- BECAUSE WE MADE THAT CHANGE IN OUR STRATEGIC PLAN THIS YEAR THAT WE NEED TO RAMP UP OUR DELIVERABLES TO THE COMMUNITY AND THOSE ARE THE AREAS THAT COVER THE DELIVERABLES. >> ABSOLUTELY AGREE ON THAT AND I THINK IT IS IMPORTANT TO NOTE THAT EVEN THINGS THAT WOULD OTHERWISE BELONG IN OTHER QUESTIONS, THINGS LIKE RESEARCH ON HEALTH OUTCOMES, HEALTH ISSUES FOR ADULTS, RESEARCH ON SCREENING FOR ADULTS, RESEARCH ON RISK FACTORS, TREATMENTS AND INTERVENTIONS FOR ADULTS, ALL OF THE THINGS THAT PERTAIN TO ADULTS GET PUT INTO QUESTION 7. OR MANY OF THEM GET PUT INTO QUESTION 7 -- 6. QUESTION 6. I'M SORRY. I CAN'T COUNT ANYMORE. AND AS A RESULT, IT'S REALLY A PROBLEM THAT EVEN THOUGH MOST OF US SPEND THE MAJORITY OF OUR LIVES OVER AGE 18 ONLY 2% OF FUNDING IS GOING TOWARDS OUR NEEDS. >> DR. DANIELS: JULIE. >> JULIE: I THINK IF WE WANT TO INCREASE OUR FUNDING FOR THINGS TO GIVE US DELIVERABLE, YOU MAY WANT TO ENTERS INTO THAT QUESTION 4 TOO. SO TREATMENTS AND INTERVENTIONS JUST MORE GENERALLY AND THEN TO ME THAT HANGS -- EVEN THOUGH THAT IS A BIGGER SLICE OF THE PIE RIGHT NOW THEY HANG TOGETHER IN TERMS OF THREE QUESTIONS THAT ARE FOCUSED ON TURNING THINGS AROUND FAIRLY QUICKLY IN TERM OF WHAT WE CAN DO FOR CHILDREN AND FAMILIES AND ADULTS SOONER RATHER THAN LATER. >> JOSHUA GORDON: I'M GOING ON RECORD AS GOING AGAINST ANY SPECIFIC RECOMMENDATION BUSY BALANCE. AND THE REASON I'M GOING TO DO THAT IS BECAUSE I THINK IT'S HARD TO KNOW NUMBER 1, WHAT GOOD SCIENCE WILL COME IN IN WHICH CAT CORES AND WHAT OPPORTUNITIES THERE WILL BE. IT IS EASY TO SAY WE WANT TO FUND MORE THINGS ON LIFESPAN AND WE ARE DOING A GOOD JOB OF INCREASING THE NUMBER OF APPLICATIONS AT LEAST AT NIMH THAT COME IN WITH REGARD DO LIFESPAN THROUGH TARGETED ANNOUNCEMENTS BUT IT'S HARD TO KNOW WHETHER THAT WILL CONTINUE AND HOW MUCH THAT CAN GROW. SO I WOULD -- MY OWN PREFERENCE WOULD BE TO KEEP ANY RECOMMENDATIONS RATHER GENERAL. SO I DON'T HAVE A PROBLEM WITH SAYING THAT PICKING OUT SAY LIFESPAN AND SERVICES AND INTERVENTIONS RESEARCH AS AREAS THAT COULD GROW. BUT I WOULD BE WARY ABOUT MAKING TOO SPECIFIC RECOMMENDATIONS& ABOUT THIS. >> DR. DANIELS: DAVID? >> DAVID: I THINK THERE IS A LOT OF VALUE IN THE PLAN YOU JUST PROPOSED. ONE AREA THAT IS PARTICULARLY CONCERNING TO ME IS THAT I THINK ONE OF THE REASONS WE DON'T HAVE MORE FUNDING IN THOSE AREAS IS WE DON'T HAVE GOOD SCIENTISTS IN THOSE AREAS AND INCENTIVES FOR SCIENTISTS TO GO INTO THOSE AREAS AND I WOULD AT LEAST LIKE TO THINK ABOUT HOW WE COULD INCLUDE LANGUAGE THAT WOULD RELATE TO WHAT IS IN QUESTION 7 AROUND DEVELOPING THE SCIENCE WORKFORCE NOT JUST IN AUTISM BROADLY, WHICH IS CERTAINLY NEEDED BUT FROM THESIS SPECIFIC AREAS WHICH I THINK WILL DO AS MUCH TO ENHANCE THE SCIENCE AS SPECIFIC RFAs OR PAs IN THOSE AREAS. >> SAM: I CAN UNDERSTAND WE DON'T WANT A SPECIFC DOLLAR AMOUNT FOR ANY ONE AREA. I HOPE WE CAN ALL AGREE THAT 2% FOR ALL RESEARCH PERTAINING TO ADULTS INCLUDING SERVICES AND TREATMENT RESEARCH AND INCLUDING RISK FACTORS SCREENING, DIAGNOSIS RESEARCH, ALMOST EVERYTHING THAT HAS TO DO WITH ADULTS WHICH IS ALL IN THIS QUESTION, 2% IS JUST COMPLETELY UNCONSCIONABLE GIVEN THE NUMBER OF PEOPLE WHO ARE ADULTS OR WHO HOPE TO ONE DAY BE ADULTS IN OUR COMMUNITY. >> I WOULD AGREE THE 2% IS NOT DEFENSIBLE. WE NEED TO SAY SOMETHING ABOUT THAT THIS REALLY REQUIRES RESOURCE GROWTH. >> DR. DANIELS: SO WE COULD MAYBE MAKE A STATEMENT IN THIS BUDGETED SECTION WHICH WE HAVE WORKED ON A DRAFT NARRATIVE. WE COULD ADD SOMETHING ABOUT WITH AN EMPHASIS TOWARDS TRANSLATIONAL RESEARCH ESPECIALLY IN INTERVENTIONS SERVICES AND LIFESPAN ISSUES.& >> SAM: I DON'T KNOW HOW SPECIFIC WE WANT TO GET BUT WE COULD POTENTIALLY GIVE EXAMPLES LIKE THE ASD MECHANISMS. I THINK OF A COUPLE OF RESEARCHERS WHO ARE CHILDHOOD INTERVENTION RESEARCHERS WHO DEVELOPED PROGRAMS FOR TRANSITION AGE TO ADULTS BECAUSE THERE WAS A MECHANISM THERE FOR THAT. >> JOSHUA GORDON: AND THIS DATA IS 2015 DATA BEFORE THE ADULT ANNOUNCEMENTS IN FUNDING. SO, I MEAN, I'M SURE THAT NUMBER IS ALREADY GONE UP. I DON'T KNOW BY HOW MUCH BUT I'M SURE IT HAS GONE UP. IT'S A GOOD POINT. 2% IS IN DEFENSIBLE. I'M NOST TRYING TO DEFEND IT BUT QUESTIONS TWO AND 3, THOUGH THEY ARE NOT ABOUT ADULTS SPECIFICALLY, OBVIOUSLY IMPACT ADULTS. BUT STILL, EVEN WITH THAT, I'LL GRANT YOU 2% IT IS TOO LOW. >> SAM: AND WHEN WE HAVE BEEN TALKING ABOUT WHICH STUDIES GO TO WHICH QUESTION, IF THERE IS SAY BIOLOGY STUDY THAT IS SPECIFICALLY ON ADULTS THAT OFTEN ENDS UP BEING PUT IN QUESTION. 6 RATHER THAN IN QUESTION 2. AND I THINK THAT IS FAIR BECAUSE WE NEED TO TRACK WHICH STUDIES ARE ON ADULTS AND IF WE DON'T TRACK THAT, IN THIS WAY, WE ARE NOT GOING TO BE ABLE TO GET A ACCURATE NUMBER. I DON'T THINK WE CAN ASSUME THAT THE OTHER CATEGORIES ARE SOMEHOW SECRETLY ABOUT ADULTS. >> DR. DANIELS: WE ARE TRACKING THAT AND WITH THE NEW DATA SYSTEM WE ARE DEVELOPING, WE WILL BE ABLE TO TRACK IT EVEN TO A FINER LEVEL THAN WE CAN NOW. SO, I THINK THAT I HAVE HEARD GOOD INFORMATION HERE AND WE HAVE WHAT WE WOULD NEED TO DO REVISIONS. SO, IF THERE ARE FURTHER COMMENTS ON THE STRATEGIC PLAN, I REQUESTED THAT YOU GIVE US WRITTEN COMMENTS BY FRIDAY AUGUST 4. AND IN TERMS OF A PROCESS, I PROPOSE TAKING ALL THE WRITTEN COMMENTS WEED RECEIVE, IN CORP. THEM INTO A DRAFT AND THEN POSSIBLY SHARE THAT WITH THE CHAIRS OF EACH OF THE WORKING GROUPS TO RUN THAT DRAFT THROUGH THEM AND THEN WE COULD BRING IT BACK TO THE COMMITTEE AND EITHER TAKE -- WE COULD HAVE A PHONE CALL TO TALK ABOUT IT -- WE HOPE BY THEN, WE ARE IN PRETTY GOOD SHAPE. I'M HOPING TO AVOID HAVING TO BRING IT BACK FOR FURTHER DISCUSSION IN OCTOBER. I WOULD REALLY LIKE TO FINISH IT UP, NOT JUST FOR US BUT REAL TOW GET THE PLAN DONE SO WE CAN MOVE FORWARD ON OTHER PROJECTS AND ENSURE THE EXPLAIN IN PLACE SHOULD FUNDING BE AVAILABLE THEN YOU WILL HAVE A PLAN THAT IS READY TO GO. SO, HOW DO YOU FEEL ABOUT THAT? >> JOSHUA GORDON: I SEE NODDING BUT I'M NOT SURE WHAT YOU'RE NODDING TO. LET'S BE EXPLICIT. SUSAN PROPOSED WE COME BACK WITH A PHONE CALLING FOR FINAL APPROVAL AS OPPOSED TO APPROVING IT NOW. DR. DANIELS: OR YOU COULD TENTATIVELY APPROVE IT NOW WITH THE CHANGES WE DISCUSSED BUT YOU WILL NOT HAVE SEEN THE CHANGES BUT I COULD RUN IT BY THE WORKING GROUP CHAIRS TO MAKE SURE THEY AGREE WE HAVE CAPTURED WHAT HAS BEEN SAID IN THE ROOM. IF YOU FEEL COMFORTABLE WITH THAT WE CAN GET IT APPROVED NOW AND MAKE THOSE CHANGES. >> I'M WILLING TO APPROVE IT NOW. I MAKE A MOTION WE PUT OUR TRUST IN SUSAN TO DO THIS AND VOTE TO APPROVE IT NOW. >> JOSHUA GORDON: DO I HEAR A SECOND. ALL IN FAVOR RAISE YOUR HANDS. ANY OPPOSED? ALL IN FAVOR. DR. DANIELS: ANYONE ON THE PHONE? BECAUSE WE DON'T HAVE A QUORUM WITH THAT NUMBER. WE NEED 16. IF RUTH IS JOINING THAT'S 17? WE DO HAVE A QUORUM. SO WHO IS OPPOSED? RUTH? ANYONE ON THE PHONE OPPOSED? ANYONE ABSTAINING? SO THEN THE MOTION CARRIES TO APPROVE IT WITH THE CHANGES WE DISCUSSED AND WITH THE REVIEW OF THE CHAIRS OF EACH OF THE WORKING GROUPS SO THEN WE WILL GO AHEAD AND BE WORKING ON ALL OF THOSE. PLEASE SEND US ANY COMMENTS YOU HAVE. WE'LL INCORPORATE THEM AND GET THEM BACK TO THE WORKING CHAIRS AND YOU'LL BE HEARING FROM ME BEFORE OCTOBER. HOPEFULLY WE WILL HAVE A COMPLETED PLAN IN OCTOBER. THE PRINTED VERSION MIGHT NOT BE READYIETED BUT WE'LL HAVE THE TEXT ALL DONE. THANK YOU. >> JOSHUA GORDON: SO, WE HAVE ABOUT 17 MINUTES LEFT. SO, WE ARE GOING TO SKIP OVER THE SUMMARY OF EVENT FOR THIS TIME AND LEAVE EXTRA TIME FOR YOU TO DISCUSS THOSE ADVANCES AT THE NEXT MEETING. WE HAVE A FEW MINUTES FOR ROUND ROBIN. THREE PEOPLE SUBMITTED -- >> DR. DANIELS: SO QUICKLY, OUR PLAN WAS TO MOVE TO DOING THE WORKING GROUP SO I KNOW I HAD COMMITTEE MEMBERS ASK ABOUT WHETHER WE ARE GOING TO GET TO WORKING GROUPS. I WOULD LIKE TO COMPLETE THE PLAN. WOULD YOU BE COMFORTABLE WITH US STARTING THE WORKING GROUPS AFTER OCTOBER OR DO YOU WANT US TO START THEM IN THE FALL LIKE BEFORE THE OCTOBER MEETING? WOULD YOU LIKE TO WAIT UNTIL AFTER WE HAD THE OCTOBER MEETING TO CONVENE THE FIRST CALLS? OR DO YOU WANT TO START THEM IN SEPTEMBER AND OCTOBER? >> JOSHUA GORDON: WE'LL SEE IF THEY HAVE THE OPPORTUNITY TO MEET BEFORE OCTOBER. >> DR. DANIELS: SO WE'LL BE IN TOUCH ABOUT THAT. >> JOSHUA GORDON: THERE WERE THREE PEOPLE WHO SUBMITTED BEFOREHAND ITEMS FOR THE ROUND ROBIN AND SO WE'LL GO WITH THEM FIRST AND THEN IF THERE IS TIME, WE'LL CONTINUE AROUND THE TABLE. LET'S START WITH -- NOT WITH NIMH SO WE CAN SACRIFICE OURSELVES IF WE NEED TO FOR TIME. JENNIFER JOHNSON. SHE LEFT? TIFFANY? >> TIFFANY: I WAS GOING TO GIVE A QUICK UPDATE ON THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING WE HAD AT FDA BACK IN THE BEGINNING OF MAY. AND IT WAS ACTUALLY REALLY INTERESTING AND ENLIGHTENING AND IT WAS BASICALLY FOR THOSE FOLKS WHO AREN'T FAMILIAR WITH THESE MEETINGS, ITS IT WAS A HALF DAY MEETING WHERE WE HAD INDIVIDUALS WITH AUTISM, THEIR FAMILIES, CAREGIVERS, ET CETERA, PARTICIPATED IN PANEL DISCUSSIONS TO GET AN IDEA OF WHAT WOULD BE CLINICALLY MEANINGFUL TARGETS FOR DRUG DEVELOPMENT IN AUTISM SPECTRUM DISORDER. AND ONE OF THE THINGS THAT WAS REALLY INTERESTING WAS JUST HOW DIFFERENT THE THINGS WERE THAT THOSE FOLKS HAD MORE IMPORTANT TO THEM VERSUS SOME OF THE THINGS THAT DRUG COMPANIES ARE ACTIVELY PURSUING AT THE MOMENT. SO, ONE EXAMPLE THAT WILL KEPT COMING UP OVER AND OVER AGAIN WAS LIKE REPETITIVE BEHAVIOR. SO THE FOLKS WHO WERE THERE BASICALLY EXPLAINED THAT THEY DIDN'T WANT ANYBODY TO MESS WITH THEIR REPETITIVE BEHAVIOR SYSTEM. THE REPETITIVE BEHAVIORS HELPED THEM TO FEEL BETTER AND THAT IT WAS WHATEVER WAS DISTRESSING OR BOTHERING THEM THAT WAS CAUSING THE SKIMMING THEY WANTED HELP WITH, NOT THE SKIMMING ITSELF. SO IS THAT IS JUST ONE EXAMPLE. ALSO THE IDEA THAT JUST BECAUSE SOMETHING IS OBSERVABLE AND COUNTABLE DOESN'T MEAN THAT IT IS SOMETHING THAT WILL CHANGE SOMEONE'S LIFE OR MAKE THEM FUNCTION BETTER. ONE WOMAN BASICALLY SAID SHE IS LIKE, THE NUMBER OF TIMES THAT I MAKE EYE CONTACT WITH YOU DURING THIS CONVERSATION ISN'T GOING TO AFFECT HOW FUNCTIONAL I AM IN MY DAY-TO-DAY LIFE. I'M LIKE WELL, YES, THAT MAKES PERFECT SENSE. SO, IN ANY CASE, IT REALLY GAVE US A LOT OF USEFUL INFORMATION IN TERMS OF HOW WE AT FDA IS APPROACH COMPANIES WHO ARE SEEKING NEW INDICATIONS IN THE AUTISM SPACE. SOMEBODY COMES IN AND SAYS, OUR PRIMARY ENDPOINT IS BASED ON RESTRICTED REPETITIVE BEHAVIORS, WE ARE GOING TO SAY, WELL, ACTUALLY THAT MIGHT NOT BE THE BEST THING AND MAYBE YOU OUGHT TO RETHINK THAT. SO, THE END PRODUCT OF THIS MEETING IS SOMETHING CALLED VOICE OF THE PATIENT REPORT. AND THAT SHOULD THEORETICALLY, IF EVERYTHING GOES WELL, BE READY BY THE END OF THE YEAR. BUT IF FOLKS ARE INTERESTED IN THAT MEETING, THE FULL TRANSCRIPT OF THE MEETING IS AVAILABLE ON LINE AS WELL AS ANY SLIDES THAT WERE PRESENTED AND I BELIEVE AUDIO RECORDINGS AS WELL. SO IF ANYONE IS INTERESTED, JUST GOOGLE PFDDFDA AND IT SHOULD BE THE FIRST PAGE THAT COMES UP. >> JOSHUA GORDON: ALL RIGHT. THANK YOU. NEXT THEN WE HAVE DANNY FROM NIH IS GOING TO TALK TO US ABOUT THE ASD NEEDS PROGRAM. >> THANK YOU. I FEEL LIKE WE ARE DESERT HERE. THE BEST FOR LAST. I FEEL IT'S BEEN A FASCINATING CONVERSATION TODAY AND I LIKE TO CAP THAT OFF BY TELLING YOU ABOUT A FANTASTIC MEETING WE HAD AT THE NATIONAL INSTITUTE OF MENTAL HEALTH LAST MONTH WITH THE SCIENTISTS FROM FIVE STUDIES THAT ARE CONDUCTING RESEARCH ON EARLY AUTISM DETECTION, ENGAGEMENT AND LINKAGES TO SERVICES. I WANT TO TELL YOU ABOUT THE WHAT SASD PEDESTRIAN NETWORK CAME ABOUT. THE IACC STRATEGIC PLAN OF LAST YEAR. I KNOW YOU'RE TALKING ABOUT THIS YEAR'S PLAN OR LAST TIME IN 2013, IT WAS FRAMED AROUND SEVEN QUESTIONS VERY SIMILAR. AND IN RESULT OF THOSE SEVEN QUESTIONS, NIMH CREATED A SEARS OF FUNDING OPPORTUNITY ANNOUNCEMENTS WRITTEN BY MY COLLEAGUE, THAT RESPONDED TO THE LAST STRATEGIC PLAN AND ONE OF THOSE QUESTIONS, WHETHER SHOULD I BE CONCERNED, RESULTED IN THIS FUNDING OPPORTUNITY ANNOUNCEMENT TITLE, RESEARCH ON EARLY IDENTIFICATION AND LINKAGE TO SERVICES. AND WE RECEIVED A NUMBER OF APPLICATIONS FROM AROUND THE COUNTRY TO TEST THE DEVELOPMENT OF INTERVENTIONS THAT COORDINATE SCREENING AND EVALUATION AND ENGAGEMENT AND TREATMENT VERY YOUNG KIDS WITH THE SPECIAL FOCUS ON UNDER SERVED FAMILIES. SO, WE FUNDED THE TOP FIVE SCORING APPLICATIONS AND THESE WERE IN THESE DIFFERENT AREAS ACROSS NINE DIFFERENT STATES AND 16 DIFFERENT SITES AND LET ME TELL BUT WHO THE RESEARCHERS ARE AND WHAT THEY ARE DOING. KAREN PIERCE IS TESTING A TRIPLE SCREEN AT WELL BABY CHECKUP AND SCREENING AT 12, 18 AND 24 MONTHS AND PROVIDING SERVICES. WENDY STONE IS FOCUSED ON RURAL SETTINGS IN THE STATE OF WASHINGTON SO THAT IS -- AND TESTING SCREEN-REFER AND TREAT MODEL. EMILY IN BOSTON IS DOING A COMPARATIVE EFFECTIVENESS STUDY LOOKING AT ENGAGEMENT AND USING NAVIGATOR MODELS. ALICE CARTER AND HER TEAM AT THE UNIVERSITY OF MASSACHUSETTS IS FOCUSING ON EARLY INTERVENTIONS AND LOOKING AT A SYSTEM-LEVEL APPROACH AND TESTING ACCESS ESPECIALLY FOR HEALTH DISPARITIES. AND AMY WEATHER BEE AND HER COLLEAGUES ARE TESTING A LARGE MULTI-SITE STUDY LOOKING AT ON LINE ENGAGEMENT -- AUTOMATED SCREENING TOOLS AND TESTING VARIOUS ENGAGEMENT MODELS TO ENHANCE THE LINKAGE OF TREATMENT AND SERVICES. SO, OF COURSE WE HAVE DIFFERENCES WHEN WE LOOKED AT THESE STUDIES TOGETHER, WE COMPARED THE DIFFERENCES AND SIMILARITIES. AND EVERYBODY HAD A LITTLE BIT OF BOTH BUT IF YOU TOOK THE STUDIES TOGETHER, WE FOUND THAT APPROXIMATELY 70,000 CHILDREN OF THESE FIVE STUDIES WOULD BE SCREENED AND IF YOU LOOK AT THE CDC DATA, WE ANTICIPATE THAT ABOUT 1000 KIDS MAY BE DIAGNOSED. SO WE THOUGHT THERE MIGHT BE A WAY TO HARNESS ALL OF THESE STUDIES TOGETHER OF THE SO IN 2014, WE INVITED THE RESEARCHERS TO WORK TOGETHER AND THEY AGREED. SO WE CALLED IT THE ASD PEDIATRIC EARLY DETECTION ENGAGEMENT AND SERVICES NETWORK AND THEY ALSO ALL AGREED TO COLLECT DATA ON THESE FOUR COMMON MEASURES. SO THEY ARE USING THEM NOW. SO SINCE THE GRANTS WERE AWARDED BACK IN 2014, THEY MET TOGETHER AND HAVE FORMED A WEBSITE. THEY ARE SHARING DATE AND TRANSLATING INSTRUMENTS AND SHARING THAT AND TRAINING EACH OTHER'S STAFF FOR FREE. BUT THE OTHER PIECE THAT ALL OF YOU ARE VERY FAMILIAR WITH THAT IN 2014 SINCE THAT TIME, THE U.S. PREVENTIVE SERVICE TASK FORCE CAME OUT AND IN RESPONSE TO THAT, A JAMA EDITORIAL ACKNOWLEDGE THE AND RECOGNIZED THE ASD PEDESTRIAN NETWORK AND HIGHLIGHTED POTENTIAL IN ADDRESSING RESEARCH GAPS. PED. WE ARE NOW IN THE THIRD YEAR OF THEIR 5 YEAR STUDIES. AND THEY ARE IN THE MIDDLE ACTIVELY RECRUITING AND COLLECTING DATA. SO LET ME GET TO THE MEETING WE JUST CONVENED. AND THERE IS A LOT OF ENERGY. FOLKS ARE 86LY CONDUCTING RESEARCH SO KIDS AND FAMILIES CAN BENEFIT FROM THIS AND FOUR GENERAL THEMES WERE DISCUSSED. THE FIRST WAS THE IMPACT OF PARENTAL CONCERN, THE PRESENCE AND ABSENCE OF PARENTAL CONCERN REALLY DRIVES TREATMENT SEEKING AND THEY ARE FINDING VARIOUS LEVELS OF PARENTAL CONCERN. PROVIDER-LEVEL CONCERN. THE CONCERN OF STIGMATIZING AND FEAR OF STIGMATIZING FAMILIES AND ALSO WEIGHING THAT WITH THE CONSEQUENCES TO TODDLERS WHEN YOU TAKE A WAIT-AND-SEE APPROACH. SO THEY ARE COLLECTING DATA ON THAT. TREATMENT TRACKING LOOKING AT PATHWAYS FROM SCREENING TO SERVICES BECAUSE THESE KIDS ARE RECEIVING SCREENING DOESN'T MEAN THEY ARE GOING TO GET SERVICES. THE SEVERANCES MAY EVEN BE AVAILABLE IN THOSE COMMUNITIES BUT ACCESS IS AN ISSUE. SO THEY ARE LOOKING AT ALL THOSE FACTORS. AND THE THIRD ITEM IS ONSET OF ASD SYMPTOMS AT 12 MOTION AND 18 AND 24 AND 36 MONTHS. SO MAYBE THERE COULD BE A DEVELOPMENTAL TYPOGRAPHY OF SYMPTOMS THAT THEY MIGHT BE ABLE TO START LOOKING AT AND COMPARING TRAJECTORIES. AND THEN LASTLY, WE HAVE A CAREER DEVELOPMENT FELLOW THAT IS CONDUCTING AN IMPLEMENTATION PROJECT AND TALKING AND INTERVIEWING USING A MIXED METHODS APPROACH EDITING RESEARCHERS TO LOOK AT FACILITATORS AND BARRIERS TO IMPLEMENTATION. SO, I AM PLEASED TO REPORT THERE WILL BE MORE TO COME. STUDIES SHOULD BE COMPLETED IN THE FALL OF 2019. AND THEY WILL BE COPUBLISHING FINDINGS AND JOINTLY PRESENTING AT SOME OF THE MAJOR CONFERENCES AND OF COURSE THEY WANT TO SOMEHOW EXPLORE THE FUTURE STUDIES THAT COULD BE HARNESSED WITHIN THE COHORTS FROM THESE NETWORKS. THESE ARE DISCUSSIONS WE WILL BE HAVING AND LASTLY, IF THIS BODY IS INTERESTED, WE WOULD BE HAPPY TO HAVE THE RESEARCHERS COME AND PRESENT THEIR FINDINGS TO YOU SOMETIME IN 2019 OR 20. THANK YOU. >> JOSHUA GORDON: THANK YOU. WE CAN GO AROUND THE TABLE NOW IF THERE ARE ANY BURNING ISSUES. WE HAVE A FEW MINUTES LEFT BUT IF ANYONE WOULD LIKE TO REPORT ON ACTIVITIES. >> SO I WANTED TO SAY IN TWO MINUTES THAT SO A COUPLE OF WEEKS AGO, DOCTOR BRENDA FITZGERALD WAS APPOINTED AS THE 17th DIRECTOR FOR THE CDC AND AS WELL AS ADMINISTRATOR OF THE AGENCY FOR TOXIC SUBSTANCES AND DISEASE REGISTRY THAT MANY OF YOU KNOW IS ATSDR. NOW DOCTOR FITZGERALD HAS PREVIOUSLY SERVED AS COMMISSIONER OF THE GEORGIA DEPARTMENT OF HEALTH AND THE STATE HEALTH OFFICER AND SHE IS SAY BOARD CERTIFIED OBSTETRICIAN GYNECOLOGIST AND PRACTICED MEDICINE FOR THREE DECADES AND SHE HAS A PARTICULAR INTEREST IN EARLY BRAIN DEVELOPMENT WHICH WAS ONE OF HER PRIORITIES WHILE AT THE GEORGIA DEPARTMENT OF PUBLIC HEALTH. SO I THINK WE WILL CONTINUE TO SEE WORK IN THAT AREA OF FOCUS OF THAT WORK AT C DC WHICH WOULD INCLUDE AUTISM SPECTRUM DISORDER. AND THEN ONE OTHER ANNOUNCEMENT. THIS IS A PREVIEW OF COMING ATTRACTIONS. SO THE OCTOBER IACC MEETING, THE CDC WILL BE SHARING MORE ABOUT LATEST RESEARCH COMING OUT OF OUR STUDY TO EXPLORE EARLY DEVELOPMENT OR SEED AND THAT CDC'S CASE CONTROL STUDY TO EVALUATE GENETIC AND ENVIRONMENTAL RISK FACTORS FOR AUTISM SPECTRUM DISORDER. SO MORE TO COME ON THAT THIS FALL. >> JOSHUA GORDON: THANK YOU. KEEP GOING AROUND THE TABLE. >> I DON'T HAVE ANYTHING TO UPDATE. >> I ALREADY MADE ENOUGH NOISE. [ LAUGHS ] >> JOSHUA GORDON: THANK YOU VERY MUCH, EVERYONE. AND WE'LL SEE YOU ALL IN OCTOBER. >> DR. DANIELS: OCTOBER 24 AND I BELIEVE WE WILL BE AT THE NEUROSCIENCE CENTER IN ROCKVILLE. THANK YOU.