>> THANK YOU VERY MUCH, EVERYONE HERE IN THE ROOM, MEMBERS OF THE COORDINATING COMMITTEE AND MEMBERS OF THE PUBLIC AND OTHERS JOINING US THROUGH THE WEB. WELCOME TO THE MEELT METEOROLOGISTING OF THE INTERAGENCY AUTISM COORDINATING COMMITTEE THAT TAKES PLACE EVERY APRIL DURING AUTISM AWARENESS MONTH. WE'RE REALLY PLEASED TO HAVE YOU HERE TODAY AND WE'VE GOT WHAT WE HOPE IS AN EXCITING AGENDA FOR YOU. WE'RE GOING TO HEAR FROM THE CDC, WE'RE GOING TO HEAR FROM OUR FRIENDS TO THE NORTH WHO HOPEFULLY AREN'T TELLING US THAT WINTER IS COMING, WE'RE GOING TO HEAR FROM THE F C C, A NEW CONTRIBUTION TO THE IACC, AND WE'RE GOING TO HAVE A PANEL PRESENTATION IN THE AFTERNOON ON DISABILITY EMPLOYMENT, AND WE'RE ALSO GOING TO HEAR FROM OUR NATIONAL AUTISM COORDINATOR LATER AND HAVE A BUNCH OF COMMITTEE BUSINESS TO TAKE AND OF COURSE PUBLIC COMMENTS, SO IT'S A FULL DAY, WE'RE GLAD TO HAVE YOU, AND WITH THAT, I'LL TURN IT OVER TO -- ACTUALLY BEFORE I TURN IT OVER, WE SHOULD REMIND PEOPLE THAT THE LIVE FEEDBACK LINK IS OPEN FOR PUBLIC COMMENT, AND IF YOU GIVE US YOUR PUBLIC COMMENTS THIS MORNING, THEN WE WILL ADD THEM TO THE COMMENT REPORT OUT DURING THE PUBLIC COMMENT SESSIONS IN THE EARLY AFTERNOON. WITH THAT, I'LL TURN IT OVER TO SUSAN DANIELS FOR ROLL CALL, MINUTES, ET CETERA. >> GREAT. YES. AND THE LIVE FEEDBACK WILL BE OPEN UNTIL BEFORE THE PUBLIC COMMENT PERIOD SO IT WON'T BE OPEN IN THE AFTERNOON. SO ANYONE WHO WOULD LIKE TO GET YOUR COMMENTS IN, FEEL FREE TO DO THAT. WE ALSO WANTED TO JUST LET YOU KNOW, BECAUSE THERE WERE QUESTIONS IN PREVIOUS MEETINGS, WE ARE OFFERING CART TODAY, THERE IS A QUIET ROOM OH TO THE SIDE OF THIS ROOM, THERE'S CLOSED CAPTIONING ON THE VIDEO AS THERE ALWAYS HAS BEEN AND OTHER ACCOMMODATIONS AVAILABLE, SO PLEASE LET US KNOW IF THERE ARE ANY OTHER NEEDS THAT NEED TO BE FULFILLED. SO RIGHT NOW WE'RE GOING TO GO AHEAD AND TAKE THE WILL ROLL CALL. SO STARTING WITH JOSH GORDON. >> HERE. >> JUDITH COOPER. >> HERE. >> ALICE KAU FOR DIANA BIANCHI. >> HERE. >> CINDY LAWLER FOR LINDA BIRNBAUM. >> HERE. >> CARE KNEE WOL CARE REWOOL KNITS FOR FR ANCIS COLLINS? ELAINE HUBAL? TIFFANY FARCHIONE IS HERE BUT MELISSA HARRIS? OR MARGUERITE SHERVITZ? I BELIEVE MELISSA IS JOINING US LATER BY PHONE. JENNIFER JOHNSON OR LESLIE KAPLAN? O LESLIE KAPLAN. >> HERE. >> LAURA KAVANAUGH. >> HERE. >> WALTER KOROSHETZ? >> DR. KOROSHETZ WILL BE JOINING THIS AFTERNOON. >> NINA SCHOR. >> RIGHT. >> GREAT. LAURA PINCOCK, HERE. MARCY RONYAK? STUART SHAPIRA? >> HERE. >> MELISSA SPENCER IS NOW GONE SO A REPRESENTATIVE FROM THE SOCIAL SECURITY ADMINISTRATION? >> HERE. >> IF YOU'RE REPRESENTING THE SOCIAL SECURITY ADMINISTRATION, YOU CAN BE UP IT AT UP AT THE TABLE SO OUR FOLKS CAN HELP YOU GET SEATED. LARRY WEXLER? NICOLE WILLIAMS? >> I'M HERE ON THE PHONE. >> MELINDA BALDWIN? DAVID AMARAL IS NOT HERE TODAY. JIM BALL, ON THE PHONE? >> YES, I'M HERE ON THE PHONE. >> THANK YOU. SAMANTHA CRANE? I THINK IS GOING TO BE HERE TODAY LATER MAYBE. JERRY GERI DAWSON? >> I AM HERE BY PHONE. AIM SORE EYE MY FLIGHT WAS MESSED UP THIS MORNING. >> THANKS FOR JOINING US BY PHONE. >> DAVID MANDELL? >> HERE. >> KEVIN PELPHREY? I THINK HE'S NOT GOING TO BE HERE TODAY. EDLYN PENA IS GOING TO WB US BY TO WITH US BY PHONE. >> I AM HERE. GOOD MORNING. >> LOUIS REICHARDT? >> HERE. >> ROB RING, ARE YOU ON THE PHONE? NO. JOHN ELDER ROBISON? >> I'M HERE. >> ALISON SINGER? >> I'M HERE. >> AND JULIE TAYLOR? >> HERE. >> OKAY. SO WE'RE DONE WITH THE ROLL CALL. AND NOW WE CAN TAKE A MOMENT TO LOOK OVER THE MINUTES FROM THE LAST MEETING. DOES ANYONE HAVE ANY QUESTIONS OR CONCERNS OR COMMENTS ABOUT THE MINUTES? WOULD ANYONE LIKE TO MAKE A MOTION TO ACCEPT THE MINUTES? >> I'LL MOVE TO ACCEPT THEM. >> IS THERE A SECOND? ALL IN FAVOR OF ACCEPTING THE MINUTES AS WRITTEN, SAY AYE. ANYONE OPPOSED? DOES ANYONE WISH TO ABSTAIN? SOUNDS LIKE UNANIMOUS MOVE TO GO AHEAD AND ACCEPT THESE MINUTES SO WE WILL POST THEM TO THE SEB SITE WEBSITE AFTER THE MEETING. THANK YOU. >> WELL, THE FIRST ITEM ON OUR AGENDA, WE HAVE A SPECIAL GUEST THIS MORNING WE'RE VERY PLEASED TO HAVE FROM CANADA, A MEMBER OF THE CANADIAN MEMBER OF PARLIAMENT, THE HONORABLE MIKE LAKE. MIKE IS THE FATHER OF AN ADULT SON ON THE AUTISM SPECTRUM AND ONE OF THE CANADA'S LEADING AUTISM AND DISABILITY ADVOCATES, AND HE'S -- WE'RE VERY HAPPY TO HAVE HIM DOWN HERE TO VISIT WITH US TODAY TO SPEND SOME TIME ALONG WITH HIS SON JAYDEN AND TO GIVE US A SPECIAL MESSAGE IN RECOGNITION OF AUTISM AWARENESS MONTH. >> GOOD DAY, EVERYONE. WE DID NOT BRING THE COLD WEATHER WITH US. IT TRIED TO FOLLOW US YOU BUT WE DROVE JUST FAST ENOUGH, I THINK, THAT WE ESCAPED IT COMING DOWN. TALKING TO SOME FRIENDS, IT SEEMS TO BE THE WINTER THAT NEVER ENDS BACK HOME. I THINK WE GET A LOT OF SNOW BUT IN OTTAWA, THEY HAD SNOW AT LEAST ONE INCH OF SNOW FOR A LONGER PERIOD OF STRAIGHT TIME THAN EVER BEFORE. SO WE MANAGED TO ESCAPE THAT. NOW THIS IS JAYDEN. JAYDEN IS GOING TO SAY HI TO YOU, AND WHEN HE SAYS HI TO YOU, YOU HAVE TO APPLAUD FOR HIM. >> HI! [APPLAUSE] >> IT'S GREAT TO HAVE HIM. I WAS HERE TWO YEARS AGO AND MY PRESENTATION IS GOING TO AB LITTLE SHORTER THIS TIME. YOU'RE GOING TO SEE A COUPLE THINGS THAT YOU'VE SEEN BEFORE. WHAT I HOPE TO GET OUT OF IT IS JUST TO HAVE A CONVERSATION, WE'LL HAVE A LITTLE BIT OF TIME FOR QUESTIONS AFTERWARDS, BUT JUST TO KIND OF GIVE YOU A LITTLE BIT OF THE LAY OF THE LAND NOW. NOTICE I DON'T HAVE ANY CONTROLS UP HERE, I DON'T THINK, SO IS SOMEONE ELSE CONTROLLING -- OH, THERE WE G RIGHT HERE. SO WHAT I'M GOING DO IS JUST WALK YOU THROUGH A FEW VIDEOS, AND I THINK THE FIRST ONE YOU MAY HAVE SEEN LAST TIME I WAS HERE BUT I ALWAYS LIKE TO SHOW IT. A FEW YEARS AGO, WE DISCOVERED THAT JAYDEN LIKES TO SING IN HIS OWN WAY, AND MY DAUGHTER TOOK A 35-SECOND IPHONE CLIP IN THE BASEMENT AND WE POSTED IT ON YOUTUBE OR ON FACEBOOK, IT GOT 1.4 MILLION VIEWS, SO I FIGURE A GOOD WAY TO START ANY MORNING IS JAYDEN SINGING. OKAY, READY? * * WHEREVER YOU ARE IT IS NEVER TOO FAR WHEN YOU THINK OF ME I'LL BE WITH YOU * GOOD JOB! THAT WAS NICE! >> I THINK I MENTIONED WHEN I SHOWED THIS LAST THAT ONE OF THE COMMENTS I GOT FIRST OVERALL WAS FROM SOMEONE ON THE AUTISM SPECTRUM WHO SAID, WOW, YOU HAVE A LOT OF REMOTES. [LAUGHTER] THAT WAS THE OBSERVATION. I THINK I KNOW WHAT TWO OF THEM ACTUALLY DO, I DON'T KNOW WHAT THE REST OF THEM -- I THINK I USED TO HAVE SOMETHING THAT THEY RAN, BUT ANYWAYS, THE NEXT VIDEO I'M GOING TO SHOW YOU IS ACTUALLY MY STATEMENT THAT I MADE IN THE HOUSE OF COMMONS& JUST LAST WEEK, SO I GET A CHANCE TO DO A 1-MINUTE STATEMENT EVERY YEAR, AND USUALLY WITH JAYDEN -- ALWAYS WITH JAYDEN SITTING IN THE GALLERY, AND IT'S ONE OF THOSE UNIQUE MOMENTS, YOU WATCH YOUR POLITICS DOWN HERE, IT'S PRETTY ROUGH-AND-TUMBLE, IT'S LIKE THAT UP THERE IN THE WESTMINSTER SYSTEM THAT WE HAVE, BUT WHEN I MAKE MY ANNUAL WORLD AUTISM AWARENESS SPEECH, IT'S FUNNY, WITHIN SECONDS, YOU CAN KIND OF HEAR, SH, SH, SH AND EVERYBODY GETS QUIET AND AFTERWARDS THEY ALL APPLAUD FOR JAYDEN AT THE END. I THINK SORT OF MY MOTIVATION FOR THIS YEAR'S MESSAGE WAS REALLY SOME OF MY CONVERSATIONS OVER THE LAST COUPLE OF YEARS WAS SELF ADVOCATES, AND THE WHOLE CONVERSATION ABOUT SELF DETERMINATION. AND OF COURSE IN JAYDEN'S CASE, JAYDEN WOULD HAVE A DIFFICULT TIME FULLY SELF DETERMINING BECAUSE HE DOESN'T UNDERSTAND DANGER AND IF HE JUST WAS LEFT TO MAKE ALL OF HIS OWN DECISIONS, THE VERY FIRST DAY WOULD PROBABLY BE TROUBLE FOR HIM, THE SECOND HE WENT OUT INTO TRAFFIC TO GO SOMEWHERE THAT HE WANTED TO GO OR ATE WAY TOO MUCH OF SOMETHING, HE HAS CERTAIN THINGS THAT HE LOVES TO EAT. I DON'T KNOW IF DRINKING ITALIAN SALAD DRESSING COULD BE DANGEROUS FOR YOU BUT WOULD HE DRINK NO END OF IF HE HAD HIS CHOICE. BUT REALLY, THE STATEMENT KIND OF SPEAKS FOR ITSELF, AND IT SEEMS TO HAVE KIND OF RESONATED WITH A FEW FOLKS. >> MR. SPEAKER, YESTERDAY WAS WORLD AUTISM AWARENESS DAY. AND THE ANNIVERSARY OF MY SON JAYDEN'S DIAGNOSIS AT AGE 2. AUTISM COMES WITH NO END OF LABELS, AND IN JAYDEN'S CASE, ONE OF THOSE LABELS IS NON-VERBAL. IRONICALLY, I THINK JAYDEN'S MOST IMPORTANT LABEL IS HIS NAME. I SAY IRONICALLY LAWS A BAWS UNBEKNOWNSTED TO US WHEN WE NAMED HIM, JAYDEN'S NAME MEANS "GOD AS HEARD. "THERE ARE FEW THINGS I KNOW FOR SURE BUT I KNOW THIS, MY 23-YEAR-OLD NON-VERBAL SON HAS SOMETHING TO SAY. HE SAYS IT IN THE SIMPLE WORDS HE TYPES OR WRITES. HE SAYS IT WITH A SIDEWAYS SMILE, A MYSTERIOUS GIGGLE, A WHIMSICAL LOOK AND SOMETIMES WITH HEARTFELT TEARS. AND IF YOU HAVE THE PATIENCE TO JUST WAIT ON HIM, QUIETLY BE PRESENT WITH HIM, JOINING HIM IN THE MOMENT IN HIS MOMENT, HE WILL TOUCH YOUR HEART IN THE MOST MAGICAL OF WAYS. YOU WILL HEAR HIS VOICE AND LU NEVER FORGET WHAT HE HAS TO SAY. [APPLAUSE] SO THAT ONE MINUTE THAT I GET TO DO THAT STATEMENT IN THE HOUSE OF COMMONS SORT OF KNOWING WHAT'S COMING AND SEEING JAY KEN DEN IN THE FRONT ROW OF THE GALLERY LOOKING DOWN IS PROBABLY MY FAVORITE TIME IN THE HOUSE. SOMETIMES I'LL MENTION SOMETHING LIKE PUPPIES OR DOGS, ALL OF A SUDDEN -- YOU'RE NOT SUPPOSED TO TALK BUT THEN I'LL HEAR THIS BA BA BA BECAUSE JADEN HAS HEARD ME SAY SOMETHING HE JUST WANTS TO KNOW A LITTLE BIT MORE. I'M GOING TO CONTINUE, THE NEXT VIDEO I'M GOING TO SHOW YOU IS FROM ACTUALLY JUST AFTER I SPOKE HERE LAST TIME AND IT'S THE HOUSE OF COMMONS AGAIN, A LITTLE BIT MORE POLITICAL, BUT I THINK IT WILL BE INTERESTING FOR YOU TO SEE THE POLITICAL DYNAMIC. WE HAD A CAMPAIGN FOR SOMETHING CALLED A CANADIAN AUTISM PARTNERSHIP, WHICH WOULD HAVE DONE SOME WORK SIMILAR TO WHAT HAPPENS IN YOUR MEETINGS HERE, AND IT WAS SOMETHING THAT WENT THROUGH A TWO-YEAR PERIOD AND THEN CAE TO A VOTE IN 2017 WITH THREE OF THE FOUR NATIONAL PARTIES ALIGNED IN FAVOR, UNFORTUNATELY THE GOVERNING PARTY WAS OPPOSED TO IT, BUT THIS 2 MINUTE MOMENT THAT I'M ABOUT TO SHOW YOU WAS A LITTLE BIT LONGER IN THE ACTUAL TIME FRAME, IS SOMETHING THAT I HADN'T SEEN, THREE LEADERS STANDING UP ONE AFTER THE OTHER AFTER THE OTHER FROM THREE DIFFERENT PARTIES USING LIMITED QUESTION PERIOD TIME THAT WE HAVE TO ASK THE GOVERNMENT ABOUT THE CANADIAN AUTISM PARTNERSHIP. SO THIS IS THREE OF THE NATIONAL LEADERS AT THE TIME ASKING THE FOURTH NATIONAL LEADER ABOUT THE CANADIAN AUTISM PARTNERSHIP. >> MR. SPEAKER, MORE AND MORE ARE REALIZING THE PRIME MINISTER'S DECISIONS HURT THE VERY PEOPLE HE CLAIMS TO HELP AND NOTHING UNDERSCORES THIS MORE THAN HIS REJECTION OF THE CANADIAN AUTISM PARTNERSHIP. MANY CANADIAN FAMILIES ARE FORCED TO MORTGAGE THEIR HOMES TO PAY FOR EARLY INTERVENTION PROGRAMS AND MORE THAN 80% OF ADULTS WITH AUTISM STRUGGLE TO FIND MEANINGFUL WORK AND THEY'RE JUST YOU LOOKING FOR A LITTLE BIT OF COMPASSION FROM THIS LIBERAL GOVERNMENT. WHEN WILL THE PRIME MINISTER FINALLY LISTEN TO THESE CANADIANS AND REVERSE HIS COLD HEARTED DECISION TO REJECT THE CANADIAN AUTISM -- >> WHEN A MEMBER OF THIS PLACE MOVED A NON-PARTISAN INITIATIVE TO CREATE A CANADIAN AUTISM PARTNERSHIP, THIS PRIME MINISTER AND HIS PARTY VOTED AGAINST IT. THIS IS ABOUT REMOVING THE CHALLENGES FACING INDIVIDUALS WITH AUTISM AND FACING THEIR FAMILIES. IT'S ABOUT UNLOCKING THE TREMENDOUS POTENTIAL OF THESE CANADIANS. WHY CAN'T THE PRIME MINISTER MOVE BEYOND PARTISAN POLITICS AND SUPPORT THIS IMPORTANT AUTISM INITIATIVE? [APPLAUSE] >> AND I THINK THIS WHOLE HOUSE CAN SEE FROM THE QUESTION FROM THE LEADER, THE OFFICIAL OPPOSITION AND THE LEADER OF NEW DEMOCRATS AND NOW FROM ME, THERE IS AN EXTRAORDINARY BROAD CONSENSUS ON THIS SIDE OF THE HOUSE THAT CANADIAN FAMILIES, INDIVIDUALS LIVING WITH AUTISM, REALLY DO NEED MORE THAN WHAT WE HAVE SO FAR. AND I WOULD ASK THE PRIME MINISTER, MR. SPEAKER, IF THE NEXT ANSWER COULD CONTAIN SOME HOPE TO THOSE FAMILIES THAT HELP IS ON THE WAY, AND THAT THE CANADIAN AUTISM PARTNERSHIP WILL FIND SUPPORT FROM THE CURRENT GOVERNMENT. [APPLAUSE] >> HONORABLE PRIME MINISTER. WE RECOGNIZE THE EXTRAORDINARY WORK THAT CANADIANS ACROSS THE COUNTRY DO TO SUPPORT THEIR LOVED ONES PARTICULARLY THOSE LIVING WITH AUTISM SPECTRUM DISORDER. WE RECOGNIZE THE STORIES AND THE COMPASSION THAT HAS BEEN SHOWN BY PEOPLE AS THEY SHARE THEIR DESIRE TO DO MORE TO FIGHT THE IMPACTS THAT AUTISM HAS ON PEOPLE WHO LIVE WITH IT. I CAN RECOGNIZE THAT MY STAFF HAS ALSO MET REPEATEDLY WITH THE MEMBER FROM EDMUNDTON TO TALK ABOUT HOW WE CAN MOVE FORWARD IN CONCRETE WAYS THAT WILL MAKE A DIFFERENCE IN THE LIVES OF SO MANY CANADIANS. >> SO THAT GIVES YOU A LITTLE BIT OF AN IDEA OF THE CONVERSATIONS THAT WE'RE HAVING, AND THAT DEBATE IS ONGOING RIGHT NOW, THERE'S SOME CHALLENGES, BEEN SOME CHALLENGES WITH THE ROLLOUT OF AN AUTISM PROGRAM IN ONTARIO, OUR LARGEST PROVINCE, SOME OF YOU MAY BE AWARE OF THAT CONVERSATION GOING ON RIGHT NOW. IT'S SOMETHING WHEN I HAVE THE OPPORTUNITY TO DO MEDIA OR TALK A LITTLE BIT ABOUT IT, I JUST ALWAYS SAY I'VE YET TO SEE A GOVERNMENT THAT GETS AUTISM RIGHT THE FIRST TIME AROUND. AND I THINK THAT'S WHAT'S SO IMPORTANT TO WHAT YOU'RE ALL DOING HERE, AND WHAT WE'RE CALLING FOR THERE IN THE CANADIAN AUTISM PARTNERSHIP, IS THE IDEA OF HAVING AUTHORITATIVE, KNOWLEDGEABLE, CREDIBLE VOICES SITTING IN A ROOM LIKE THIS, YOU KNOW, INVOLVING THE STRONG VOICE OF SELF ADVOCATES, INVOLVING THE VOICES OF PARENTS, INVOLVING THE VOICES OF EXPERTS FROM ACROSS THE RANGE OF PROFESSIONS TO SEE IF THERE CAN BE SOME COMMON GROUND FINDING IN A SENSE, AND ADVISE GOVERNMENTS, BECAUSE AS I WAS SITTING IN A CONFERENCE A FEW WEEKS AGO AND SOMEONE WAS SPEAKING AT THAT CONFERENCE SAYING THAT, YOU KNOW, YOU HAVE TO ASSUME -- THEY WERE TALKING ABOUT LOBBYING FOR THINGS THAT YOU CARE ABOUT. YOU YOU HAVE TO ASSUME THAT PEOPLE ON THE OTHER SIDE OF THE TABLE ARE REALLY SMART BUT KNOW NOTHING ABOUT THAT THING THAT YOU'RE TALKING ABOUT. AND I REALLY THINK THAT'S SORT OF THE APPROACH FROM A POLITICAL STANDPOINT. SO THE MORE WE CAN COME TOGETHER, FIND THAT COMMON GROUND ON EVIDENCE-BASED, YOU KNOW, INTERVENTIONS IN WHATEVER IT IS THAT WE'RE TALKING ABOUT ACROSS THE LIFESPAN, YOU KNOW, DIAGNOSIS, EARLY INTERVENTION, EDUCATION, HOUSING, EMPLOYMENT, ALL OF THE THINGS THAT WE TALK ABOUT, IT'S THE CRITICALLY IMPORTANT TO BE ABLE TO FIND THE COMMON VOICE AND TO TRANSLATE OUR KNOWLEDGE INTO SOMETHING THAT'S GOING TO TO MAKE SENSE TO SOMEONE THAT HASN'T LIVED AUTISM LIKE WE HAVE. AND SO SORT OF CHALLENGE YOU WITH THAT AND MAYBE WE CAN HAVE FURTHER CONVERSATION ABOUT THAT. THE LAST VIDEO I'M GOING TO SHOW YOU, MANY OF YOU IN THE ROOM HAVE SEEN THIS VIDEO. IT'S WHAT I CLOSE WITH ALL THE TIME. IT'S JADEN AND I A COUPLE YEARS AGO AT AN EVENT CALLED "WE DAY," SO WITH 15,000 STUDENTS IN AN ARENA. JADEN DOESN'T GET NERVOUS, HE GETS EXCITED WHEN WE GO OUT TO THESE THINGS. RIGHT NOW HE'S A LITTLE BIT TIRED BECAUSE WE WERE UP LATE DRIVING AND WATCHING ELECTION RESULTS FROM MY HOME PROVINCE, WHERE THE ELECTION WAS YESTERDAY, SO WE WERE WATCHING THOSE RESULTS LATE INTO THE EVENING. AND SO HE'S A LITTLE BIT TIRED TODAY. BUT HE GETS VERY EXCITED TO COME OUT AND SPEAK. AND SO YOU'LL SEE IN THIS CLIP, I'M DOING MY THING TALKING TO THESE STUDENTS AND JADEN IS JUST HANGING ON MY SHOULDER, HE'S MAKING EYE CONTACT WITH SEEMINGLY EVERY PERSON IN THE ENTIRE ARENA, ALL OF THE 15,000 KIDS, BUT YOU WHAT I LOVE MOST ABOUT THIS CLIP IS, AT THE END, THERE'S A 45-SECOND CLIP THAT INCLUDES JADEN'S SISTER FROM NOW SIX YEARS AGO. SHE'S 19 AND IN UNIVERSITY BUT THE CLIP IN THIS VIDEO IS FROM WHEN SHE WAS 13 YEARS OLD, ASKED A QUESTION THAT IS PROBABLY ONE OF THE TOUGHEST QUESTIONS THAT'S BEEN ASKED IN ANY INTERVIEW I'VE BEEN A PART OF, AND SHE JUST,S AS A 13-YEAR-OLD, I THINK BLEW IT' WAY. AND THEN WE'LL HAVE A LITTLE BIT OF CONVERSATION ABOUT THAT AND TAKE ANY QUESTIONS YOU HAVE. >> ALL RIGHT, NOW YOU KNOW SHARING WITH OTHERS IS MUCH MORE THAN ABOUT SHARING YOUR OWN TALENTS, IT'S ABOUT TAKING THE TIME TO DISCOVER THE TALENT AND THE GIFTS THAT YOUR PEERS HAVE AS WELL. SO HERE TO TELL US MORE ARE EDMONTON MP MIKE LAKE AND HIS SON JADEN. GIVE IT ! >> HEY, WE DAY! WHAT A FANTASTIC DAY. SO I'M GOING TO INTRODUCE YOU TO JADEN RIGHT NOW, AND I'M GOING TO IT LET HIM SAY HELLO AND THEN AFTER HE DOES THAT, YOU HAVE TO APPLAUD FOR HIM, OKAY? SO SAY HI. >> HI. [APPLAUSE] >> JADEN HAS AUTISM, AND SHARING HIS STORY AROUND THE WORLD IS ONE OF THE MOST MEANINGFUL THINGS WE GET TO DO. JADEN'S UNIQUE IMPACT CAN BE LINKED TO HUNDREDS OF YOUNG PEOPLE LIKE YOU WHO HAVE INVESTED IN HIM OVER 20 YEARS. JADEN IS NON-VERBAL, HAS TROUBLE WITH ABSTRACT CONCEPTS, HE'LL CRY WHEN HE'S SAD OR SQUEAL LOUDLY OR GIGGLE WHEN HE'S HAPPY. WHEN SOMETHING IS ON HIS MIND, HE'LL GRAB MY FACE AND INQUIRE WITH AN ESCALATING BA BA BA BA UNTIL HE GETS THE EXPLANATION HE NEEDS TO MOVE ON WITH HIS LIFE. HE'S OBSESSED, ABSOLUTE HEE OBSESSED WITH DOGS. YEAH, TO THE POINT WHERE HE'LL GO NOSE TO NOSE WITH ANY DOG, REGARDLESS OF SIZE. SOMETHING WE ALWAYS HAVE TO BE AWARE. IN MY ANNUAL WORLD AUTISM DAY STATEMENT, I MENTIONED FOUR YEARS AGO THAT JADEN WAS VERY MUCH LIKE OTHER 16-YEAR-OLDS. HE LOVES BAKING CHOCOLATE CHIP COOKIES, WORKING IN THE SCHOOL LIBRARY, AND BOWLING WITH DAD ON SATURDAY MORNINGS. JADEN'S SISTER WAS QUICK TO REMIND ME AT THE TIME, DADDY, NO OTHER TEENAGE BOY LOVES DOING THOSE THINGS. BUT JADEN, THE ADULT, IS VERY MUCH LIKE THE JADEN WE'VE KNOWN FROM CHILDHOOD. ALMOST INCONCEIVABLY IN. FOR THOSE WHO DON'T KNOW HIM, JADEN IS REALLY EASY TO UNDERESTIMATE. YET FOR THOSE WHO DO GET TO KNOW HIM, JADEN'S UPSIDE IS IMMEASURABLE. HE'S THE FRIEND WHO ALWAYS BELIEVES THE BEST ABOUT YOU. THE WORKER WHO NEVER WANTS HIS SHIFT TO END. AND THE STUDENT WHO MAKES ALL OF THE OTHERS BETTER. HE'S THE BROTHER WHO LOVES HIS SISTER, AND ISN'T AFRAID TO SHOW IT. AND THE SON WHO EVERY SINGLE DAY REMINDS HIS PARENTS THAT THERE'S INCREDIBLE JOY TO BE DISCOVERED IN EVEN LIFE'S MOST DIFFICULT CIRCUMSTANCES. MAKE NO MISTAKE, AUTISM AND OTHER DEVELOPMENTAL DISABILITIES COME WITH VERY REAL CHALLENGES. BUT AS WE WORK TOGETHER TO UNDERSTAND AND ADDRESS THOSE CHALLENGES, OUR COUNTRY WILL UNEARTH A TREASURE OF UNIQUE TALENTS AND ABILITIES. WE JUST NEED TO TAKE THE TIME TO LOOK FOR THEM. [APPLAUSE] NOW, HERE'S A CLIP OF JADEN WITH JANAY, WHO AT JUST 13 YEARS OLD CAPTURED PERFECTLY HOW WE ALL FEEL ABOUT JADEN. >> I'M GOING TO ASK YOU A REALLY HARD QUESTION HERE, OKAY? I KNOW YOU CAN HANDLE IT, WHICH IS WHY I'M GIVING YOU THE HEADS UP ON IT AHEAD OF TIME. DO YOU EVER SOMETIMES WISH THAT YOUR BROTHER WAS, QUOTE-UNQUOTE, NORMAL? LIKE EVERY OTHER KID? >> WELL, HONESTLY, SINCE JADEN WAS DIAGNOSED WITH AUTISM BEFORE I WAS BORN, I DON'T EXACTLY KNOW WHAT A NORMAL BROTHER IS LIKE, SO JADEN KIND OF IS MY NORMAL, LIKE, HAVING AUTISM, SO I DON'T REALLY WISH THAT HE WAS NORMAL OR ANYTHING. >> YOU LIKE HIM THE WAY HE IS? >> IF HE WAS, LIKE -- IF HE DIDN'T HAVE AUTISM ANYMORE OR WAS LIKE -- HE WOULDN'T BE THE SAME AS, LIKE, JADEN WAS NOW. [APPLAUSE] >> SO I'LL LEAVE YOU WITH THIS THOUGHT. THE MORE THAT A NORMAL LIFE FOR CANADIANS INCLUDES PEOPLE LIKE JADEN, THE MORE WE CAN WORK TOGETHER THROUGH THE HARD STUFF AND ALLOW EVERY SINGLE ONE OF OUR BROTHERS, SISTERS, NEIGHBORS, AND FRIENDS TO THRIVE. THANK YOU SO MUCH FOR INCLUDING US IN YOUR DAY TODAY, AND AS I ALWAYS DO, I'M GOING TO LET JADEN HAVE THE LAST WORD. SO SAY BYE-BYE. >> BYE >> THERE YOU GO. THANK YOU. [APPLAUSE] >> SO WE GET A CHANCE TO DO THIS PRESENTATION A LOT. IN FACT, ACTUALLY WE JUST DID IT AT DUKE WITH JERRY WHO'S ON THE PHONE. HI, GERI. JADEN, SAY HI TO GERI. >> HEY, HI, JADEN, HI, MIKE! SORRY I CAN'T BE THERE IN PERSON. >> HAD A GREAT TIME DOWN THERE. SO WE WERE JUST AT DUKE A COUPLE NIGHTS AGO, WE WERE AT THE MIND INSTITUTE WITH DAVID AMARAL BACK IN JANUARY, THE OKLAHOMA STATE-WIDE CONFERENCE IN THE FALL, I BELIEVE, BUT THE BIGGEST AUDIENCE FOR THIS PRESENTATION -- WELL, IT'S A MODIFIED PRESENTATION OF THIS, IT'S A LONGER 45 MINUTE PRESENTATION, IS INTRO PSYCH STUDENTS ACROSS THE COUNTRY, AND I LOVE THAT CLIP BECAUSE IT KIND OF LEADS INTO SOME THINKING ABOUT NORMAL, AND HOW WE DEFINE NORMAL. SO ONE OF THE THINGS I'M ALWAYS QUICK TO POINT OUT IS THAT JANAE DIDN'T HAVE A CHOICE, SHE WAS BORN INTO A FAMILY WITH JADEN IN IT. SHE'S 3 1/2 YEARS YOUNGER. AND SO JADEN WAS PART OF HER NORMAL BY DEFAULT, BUT THE SCHOOL THEY WENT TO DID HAVE A CHOICE AND THE SCHOOL THEY WENT TO IS A K-12 SCHOOL THAT DECIDED EARLY ON WITH SOME PRODDING FROM JADEN'S MOM AND MYSELF TO INCLUDE JADEN IN A REGULAR CLASSROOM WITH A FULL TIME AIDE, SO HE HAD A FULL TIME AIDE WITH HIM ALL THE WAY ALONG. AND WHILE WE THOUGHT THAT -- WHEN WE PUT HIM IN THAT CLASSROOM THAT IT WAS FOR JADEN'S BENEFIT, EVERYONE OF THE KIDS THAT GRADUATED WITH HIM WOULD SAY THAT THEIR LIFE WAS BETTER OFF BECAUSE JADEN WAS IN T1 OF THE THINGS I SORT OF CLOSE WITH IN THE PRESENTATIONS WITH THE UNIVERSITY STUDENTS IS, AS WE KIND OF THINK ABOUT NORMAL, THINK ABOUT ALMOST LIKE A VIDEO GAME THAT WORKS WITH STUDENTS, THINK ABOUT A VIDEO GAME WHERE YOU'RE A CHARACTER AND THERE'S A CIRCLE AROUND YOU THAT FOLLOWS YOU EVERYWHERE YOU ARE, BUT THAT CIRCLE EXTENDS AS FAR AS YOU CAN SEE. THAT'S PRETTY MUCH FOR ALL OF US, OUR NORMAL. I'M 49 YEARS OLD, AND MY NORMAL IS THAT CIRCLE FOLLOWING ME AROUND FOR 49 YEARS, WHEREVER I AM, EV ONCE IN A WHILE, A COMPUTER MACHINE TORE OR TV FINDS ITS WAY INTO THAT CIRCLE TO SHARE SOMETHING FROM OUT OH SIDE MY CIRCLE, BUT FOR THE MOST PART, MY NORMAL IS WHAT I'M SURROUNDED BY. AND FOR TOO OFTEN AND FOR TOO LONG, OUR NORMALS HAVE INCLUDED PEOPLE WHO HAVE JUST LIKE US, AND THEY HAVEN'T INCLUDED PEOPLE WHO ARE DIFFERENT FROM US, WHO HAVE DIFFERENT SKILL SETS, WHO COME FROM DIFFERENT PLACES. WHEN WE DO THAT, WHICH LIMIT OURSELVES. WE LIMIT OURSELVES BECAUSE IF EVERYBODY AROUND US IS JUST LIKE US, THEN THEY HAVE THE SAME STRENGTHS AS YOU AND OUR STRENGTHS AREN'T EVEN STRENGTHS ANYMORE, RIGHT? IF YOU THINK ABOUT IT, THEY HAVE THE SAME WEAKNESSES AS US, WHICH MEANS THAT THERE'S NOBODY TO COMPLIMENT US YOU, THERE'S NOBODY TO FILL IN FOR OUR WEAKNESSES. SO I COME FROM A COUNTRY WITH A VERY DIVERSE PP POPULATION IN MANY WAYS, AND WE'RE INFINITELY BETTER FOR IT. OUR SKILL SETS ARE BROADER, WE'VE GOT PEOPLE WHO HAVE LIFE EXPERIENCES DEALING WITH THINGS, IT'S UNBELIEVABLE HOW OFTEN WE HAVE A CONVERSATION WHERE WE'RE TRYING IT TO SOLVE SOME PROBLEM AND SOMEONE WHO WASN'T BORN IN CANADA TALKS ABOUT WHAT THE SOLUTION FOR THAT PROBLEM WAS IN THE PLACE THAT THEY WERE FROM, AND IT'S SOMETHING THAT WE HADN'T THUGHT ABOUT. AND SO INTERESTING GLOBAL CONVERSATION ABOUT DIVERSITY HAPPENING RIGHT NOW, I THINK A REALLY IMPORTANT ONE, AND ALL THE MORE IMPORTANT THAT AS WE'RE HAVING THESE CONVERSATIONS, WE LOOK TO BE AS INCLUSIVE AS WE CAN, NOT FOR THE PEOPLE THAT WE'RE TRYING TO YOU INCLUDE BUT BECAUSE AS A SOCIETY, WE'RE BETTER OFF HAVING DONE THAT. WE'RE GOING TO BENEFIT GREATLY FROM THE SKILLS AND ABILITIES THAT EVERYBODY BRINGS TO THE TABLE. SO I THINK WITH THAT, I'LL CLOSE THIS PART OF MY PRESENTATION AND THEN I THINK IF YOU HAVE QUESTIONS AT ALL, WE HAVE A FEW MINUTES STILL, SUSAN? >> YES, WE HAVE TIME FOR QUESTIONS. THANK YOU SO MUCH FOR BEING HERE. [APPLAUSE] ALISON? >> THANK YOU FOR THAT PRESENTATION. WE REALLY APPRECIATE BOTH OF YOU BEING HERE TODAY. I'M CURIOUS AS TO WHAT WAS THE STICKY ISSUE THAT PREVENTED THE CANADIAN AUTISM PARTNERSHIP FROM MOVING FORWARD? >> I THINK LIKE ALWAYS, POLITICS PROBABLY MORE THAN ANYTHING. IT WAS PUT IN PLACE, THE WORKING GROUP WAS ESTABLISHED PRIOR TO THE 2015 ELECTION, THEN THERE WAS A CHANGE IN GOVERNMENT, AND I THINK AS HAPPENS OFTENTIMES, GOVERNMENTS DON'T MOVE AHEAD WITH THE THING THAT WAS PRESENTED BY THE OTHER PARTY. SO I THINK PROBABLY MOSTLY JUST THAT, AND I DON'T KNOW WHAT IT'S GOING TO TAKE TO SORT OF REIGNITE THE CONVERSATION BECAUSE THE AMOUNT OF MONEY WASN'T A BIG AMOUNT OF MONEY IN CANADA, IT WAS $20 MILLION OVER FIVE YEARS, MOST OF THE DELIVERY OF SERVICES HAPPENS AT THE PROVINCIAL LEVEL SO THIS WAS REALLY THE IDEA OF PUTTING TOGETHER A PARTNERSHIP OF YOU A IT TISM AUTISM STAKEHOLDER EFFORTS TO ADVISE GOVERNMENTS IN THEIR JURISDICTION ON AUTISM POLICY. IT SHOULD HAVE BEEN A NO-BRAINER. AND I THINK A LOT OF PEOPLE SAW IT THAT WAY BUT FOR WHATEVER REASON, I THINK SOMETIMES POLITICS JUST GET IN THE WAY OF THINGS LIKE THIS. >> DAVID? >> THANKS FOR THAT PRESENTATION AND FOR YOUR ADVOCACY. I'VE FOLLOWED FROM AFAR SOME OF THE CHALLENGES IN CANADA AROUND FUNDING AND GRANTING ACCESS TO SERVICES STARTING WITH EARLY INTERVENTION SERVICES AND AS PEOPLE AGE, AND I KNOW THAT CANADA IS IN THE MIDST OF SOME TRANSITIONS AROUND ITS SERVICE SYSTEM FOR PEOPLE WITH AUTISM. I WONDER IF YOU CAN SHARE WHERE YOU SEE THAT GOING, AND IF WE HAVE ANY LESSONS TO LEARN AS YOU TRY AND DEVELOP A MORE COMPREHENSIVE AUTISM SERVICE SYSTEM. >> SO I WOULD SAY A FEW DIFFERENT THINGS TO THAT. FIRST OFF, I'M NOT AN EXPERT. I HAVE A BUSINESS BACKGROUND, I WORKED FOR THE EDMONTON OILERS, WHO ARE UNFORTUNATELY AGAIN OUT OF THE PLAYOFFS. BUT SO THAT'S WHAT I DID BEFORE THIS. MY SWEET SPOT IS, I DO UNDERSTAND AUTISM, HAVING WORKED IN IT FOR A LONG TIME WITH A LOT OF GREAT PEOPLE, AND MOST IMPORTANTLY, BEING JADEN'S DAD. AND I DO HAVE A UNIQUE POSITION AS A LEDGE SLAY TO TORE, LEGISLATOR SO AS SOMEONE ELECTED. MY ADVICE WHEN I GET THE CHANCE IS TO SAY, FIRST OFF, TAKE A LIFELONG VIEW OF AUTISM, A COMPREHENSIVE VIEW OF AUTISM BECAUSE EVERYTHING IS GOING TO FIT TOGETHER AT SOME POINT ANYWAY AND WE'RE BETTER OFF IF WE CAN STRUCTURE THINGS WITH THAT IN MIND. THAT CAN BE CHALLENGING FOR GOVERNMENTS BECAUSE GOVERNMENTS WORK ON TWO AND FOUR YEAR CYCLES, AND SO THAT CAN SOMETIMES BE A CHALLENGE. WHEN I'VE HAD THE CHANCE TO SIT DOWN WITH THE GOVERNMENT IN ONTARIO RIGHT NOW, THAT'S THE ONE PIECE OF ADVICE IS, GET BEYOND THE SILOS, BRING YOUR MINISTER OF EDUCATION, YOUR MINISTER OF HEALTH, YOUR MINISTER OF CHILDREN'S SERVICES TOGETHER, AND HAVE THE EXPERTS IN THE DEPARTMENT SIT AROUND A TABLE LIKE THIS ALONG WITH THE EXPERTS IN THE AUTISM COMMUNITY, PUT IN PLACE A PANEL TO TACKLE AUTISM, AGAIN, COMPREHENSIVELY, OH SO YEAH, YOU NEED A STRONG EARLY INTERVENTION PROGRAM, BUT THAT CAN'T BE DONE IN ISOLATION FROM A STRONG EDUCATION PROGRAM BECAUSE SOMETIMES THEY'RE GOING TO CROSS OVER AND SOMETIMES THERE'S GOING TO BE TRANSITIONS FROM ONE TO THE OTHER. EARLY INTERVENTION IS GOING TO BE MADE OBVIOUSLY WAY MORE IMPACTFUL IF YOU'VE GOT A REALLY GOOD SYSTEM OF DIAGNOSIS AND YOU'RE DIAGNOSING EARLIER. BUT YOU ALSO HAVE TO TAKE INTO ACCOUNT THAT THERE ARE A LOT OF ADULTS WALKING AROUND RIGHT NOW THAT HAVE AUTISM, AND DON'T KNOW IT. THEY HAVEN'T BEEN OFFICIALLY DIAGNOSED. SO WE HAVE TO TAKE THAT INTO ACCOUNT AS WE'RE TALKING ABOUT DIAGNOSIS. EVERYBODY HOPEFULLY IS GOING TO MOVE INTO A TIME PERIOD WHERE THEY'RE GOING TO CONSIDER POST SECONDARY EDUCATION, EMPLOYMENT IS GOING TO BE AN ISSUE, HOUSING IS GOING TO BE AN ISSUE, AND SO THOSE HAVE TO BE PART OF THE CONVERSATION AS WELL. YOU ALL KNOW THIS, BUT I THINK THAT THE CHALLENGE IS COMMUNICATING THAT TO POLICY MAKERS WHO DON'T LIVE IN THAT WORLD, SO HITTING THAT POINT THAT I HIT A LITTLE BIT EARLIER AND SORT OF BRINGING IT TOGETHER IN AN EASY TO UNDERSTAND PACKAGE, AND I UNDERSTAND WHEN YOU'RE COMING IN THIS ROOM, IT'S NOT LIKE YOU'VE GOT A -- I DON'T KNOW HOW MANY PEOPLE ARE INVOLVED IN THE PROCESS, BUT I'M SURE HUNDREDS BY EXTENSION. IT'S NOT LIKE THOSE HUNDREDS OF PEOPLE ARE ALL COMPLETELY ON THE SAME PAGE ON EVERY ISSUE, RIGHT? IS THAT FAIR TO SAY? YOU GUYS BATTLE ABOUT A FEW THINGS IN THIS GROUP PROBABLY FROM TIME TO TIME, BUT TRY AND FIND THAT COMMON GROUND WHENEVER YOU CAN. SO THAT IT MAKES IT A LITTLE BIT EASIER TO UNDERSTAND, ESPECIALLY WHAT'S REALLY EASY FOR GOVERNMENTS TO DO. DOES THAT MAKE SENSE? SO THAT COMPREHENSIVENESS IS THE BIG THING, BECAUSE EVERY GOVERNMENT I SEE, THEY'RE TRYING TO PUT OUT THAT FIRE THAT'S RIGHT IN FRONT OF THEM ON ONE PARTICULAR ISSUE, AND JUST NOT TAKING THAT TIME TO LOOK AT THE WHOLE PICTURE. >> SAMANTHA? >> THANKS FOR COMING, AND THANKS, JADEN, FOR COMING TOO. THIS IS SORT OF A FOLLOW-UP ON WHAT YOU WERE JUST SAYING. IN TERMS OF COMMUNITY BEASED SERVICES FOR COMMUNITY-BASED SERVICES FOR ADULTS IN CANADA, WHAT ARE THE BIGGEST CHALLENGES THAT YOU'RE FACING IN CANADA? I KNOW THAT A LOT OF US IN THE U.S., YOU KNOW, THERE ARE HOME AND COMMUNITY-BASED SERVICES TO HELP PEOPLE STAY IN THE COMMUNITY WHEN THEY'RE ADULTS, BUT THERE ARE HUGE WAITING LISTS AND THEY CAN BE HARD TO ACCESS. SO, YOU KNOW, HOW DOES IT WORK OVER WHERE YOU ARE? >> I WOULD SAY IT'S NO DIFFERENT. THE CHALLENGES OFTENTIMES THAT WE FACE IN CANADA ARE VERY SIMILAR. WE'VE GOT A PROVINCIAL STRUCTURE WHERE MOST OF THE DELIVERY OF SERVICES IS AT THE PROVINCIAL LEVEL, SIMILAR TO WHAT IT IS HERE. WE ALSOS HAVE A SITUATION THAT I THINK MANY PEOPLE IN THIS ROOM WOULD BE ABLE TO RELATE TO IN THE SENSE THAT THERE WAS SORT OF A WAVE OF PEOPLE WITH AUTISM. AGAIN, I'M NOT A SCIENTIST ON THE NUMBERS BUT IT SEEMS LIKE ACTUALLY RIGHT AROUND THE TIME JADEN WAS DIAGNOSED IN THE MID TO LATE '90S, THERE SEEMED TO BE A LITTLE BIT MORE OF A WAVE COMING THROUGH OF DIAGNOSIS OF PEOPLE THAT AGE, AND THAT WAVE NOW IS MOVING INTO ADULTHOOD AND SUDDENLY WE'RE FOCUSED, THIS IS THAT IDEA OF SUDDENLY WE'RE FOCUSED ON TRANSITION ISSUES TO ADULTHOOD. WHEN WE PROBABLY JUST FOLLOWING AGING PA PATTERNS FOR MILLENNIA WOULD HAVE KNOWN THAT OUR 2-YEAR-OLDS WERE EVENTUALLY GOING TO BECOME 18 AND 20-YEAR-OLDS PROBABLY COULD HAVE STARTED PREPARING FOR THAT A LITTLE BIT EARLIER, BUT I DO THINK WE'RE ALSO -- AS WE'RE HAVING THAT CONVERSATION, WE'RE ALSO HAVING CONVERSATION ABOUT WHAT HOUSING SHOULD LOOK LIKE FOR PEOPLE WITH AUTISM, RIGHT? AND OF COURSE FOR EACH INDIVIDUAL WITH AUTISM, IT'S GOING TO BE ABOUT MEETING THEIR NEEDS AND WHAT IT IS THAT THEY WANT, AND I DON'T KNOW WHAT THAT IS FOR JAY DEB AT JADEN AT THIS POINT IN TIME. HE SEEMS TO WANT TO LIVE WITH HIM MOM OR EYE I AT THIS POINT IN TIME BUT EVENTUALLY WE'RE GOING TO HAVE TO BE LOOKING FOR SOMETHING ELSE FOR HIM AND IT'S IMPORTANT TO HAVE CONVERSATIONS WITH JADEN TO FIND OUT WHAT'S GOING TO WORK FOR HIM. I KNOW THERE'S A LOT OF MODELS THAT SEEM TO BE WORKING, BUT YOU PROBABLY HAVE BETTER EXPERTS IN THIS ROOM TO TALK ABOUT SOME OF THOSE. IT'S A CONVERSATION THAT WE NEED TO HAVE MORE. AND ON THE EMPLOYMENT SIDE, I MEAN, WHAT ARE WE LOOKING AT, 80 TO 85% UNEMPLOYMENT FOR PEOPLE WITH AUTISM. AND WE'VE JUST GOT TO FIND WAYS TO DO BETTER THAN THAT. I KNOW THERE ARE A LOT OF PEOPLE FOCUSED ON IT. I HAVE A YOUNG WOMAN IN HER MID 20s WORKING SIX HOURS A WEEK NOW IN MY OFFICE, AND IT'S INTERESTING, HER ROLE AS A SELF DVOCATE, HER ROLE IN THE OFFICE THAT SHE'S SEIZES IS REACHING OUT TO AUTISM ADVOCACY ORGANIZATIONS, PARTICULARLY SELF ADVOCATES. SO IT'S KIND OF COOL TO HAVE A SELF ADVOCATES HAVING CONVERSATIONS AND GETTING FEEDBACK FROM OTHER SELF ADVOCACY ORGANIZATIONS AND IT'S BEEN JUST INVALUABLE TO ME. >> ASAN HAS A KAY A CANADIAN AFFILIATE. >> THERE'S AN ORGANIZATION CALLED A4A IN ONTARIO THAT'S BEEN QUITE VOCAL OVER THE COURSE OF THE CONVERSATION AND I'VE HAD A CHANCE TO MEET WITH THEM AS WELL. ANYBODY IN THE ROOM THAT WANTS TO POINT ME IN THE DIRECTION OF OTHERS WE SHOULD TALK TO, BE GLAD TO HAVE THOSE CONVERSATIONS. >> ALISON? >> I JUST WANT TO -- I'M SURE YOU'RE PROBABLY AWARE OF THIS BUT THE INTERNATIONAL SOCIETY FOR AUTISM RESEARCH ANNUAL MEETING THIS YEAR WILL BE IN MONTREAL, SO WE'RE HOPING TO HAVE A LOT OF PARTICIPATION FROM CANADIAN ORGANIZATION OHS AND ADVOCACY GROUPS, SELF ADVOCATES, FAMILIES. IT'S I THINK A WONDERFUL OPPORTUNITY TO BRING SCIENTISTS AND ADVOCATES FROM ALL OVER THE WORLD TO CANADA. SO WE LOOK FORWARD TO BEING THERE. >> I'M GOING TO TRY AND GET THERE. IT'S REALLY ACTUALLY CLOSE TO OTTAWA. BUT THE ONE THING I WOULD SAY IS, IN THEIR SORT OF FORMAL MEETINGS FOR THOSE OF YOU THAT HAVE BEEN PART OF THE SORT OF FORMAL ORGANIZATION, IT'S TOUGH FOR SOMEONE THAT'S NOT A RESEARCHER MYSELF TO GET A SPEAKING SLOT OR OH ANYTHING LIKE THAT, SO IT'S ONE PLACE THAT DOESN'T SEEM TO FIT FOR THAT VERY WELL, BUT I'M GLAD IF THERE'S A SIDE OF IT THAT ANYONE THINKS IT WOULD BE WORTHWHILE FOR ME TO COME AND SAY A FEW WORDS AT, I'M GLAD TO DO THAT. I'VE DONE THAT A FEW TIMES IN SALT LAKE CITY AND TORONTO, WHEN THE EVENT WAS IN TORONTO. SO IT'S EASY FOR ME TO MAKE MY WEIGH OVER WAY OVER THERE SO THANKS FOR THAT. I MENTIONED THIS LAST TIME AROUND KIND OF REA LATED RELATED TO THE STUFF WE'RE DOING, WE ARE REALLY TRYING TO MOVE IN A DIRECTION AND GET SOME TRACTION AROUND THE CONCEPT OF A GLOBAL AUTISM PARTNERSHIP. SO WITH MY SORT OF OTHER HAT OR PREVIOUS HAT IN PARLIAMENT, MY ROLE BY THE WAY IN PARLIAMENT, I'M IN OPPOSITION, I'M A CONSERVATIVE MEMBER OF PARLIAMENT SO I'M IN OPPOSITION RIGHT NOW AND I'M THE SHADOW MINISTER FOR YOUTH, SPORT AND ACCESSIBILITY. SO I'M OUR LEAD ON YOUTH SPORT AND ACCESSIBILITY. SO I GET THE CHANCE TO TALK TO UNIVERSITIES AND TO STUDENTS AND OTHER ACCESSIBILITY ORGANIZATIONS, BUT MY PASSION OVER THE YEARS HAS BEEN INTERNATIONAL DEVELOPMENT. SO WORKING ON INTERNATIONAL EFFORTS TO SAVE THE LIVES OF MOMS IN AND AROUND CHILDBIRTH AND KIDS UNDER 5, AND A LOT OF WORK ON THE RIGHTS OF WOMEN AND GIRLS AND THOSE KIND OF THINGS, BUT THROUGH THAT WORK, I'VE HAD THE OPPORTUNITY TO MEET SOME PRETTY FANTASTIC ORGANIZATIONS, LIKE THE GLOBAL PARTNERSHIP FOR EDUCATION, ALICE ALBRIGHT RUNS THAT FROM DOWN HERE AND SORT OF THE PLANS AND WORLD VISIONS AND SAVE THE CHILDRENS AND UNICEFS, AND I HAVE THIS VISION FOR A GLOBAL AUTISM PARTNERSHIP THAT WOULD BRING AUTISM ORGANIZATIONS FROM AROUND THE WORLD TOGETHER AND WORKING TOGETHER, HOPEFULLY DRAW SOME FUNDING FROM GOVERNMENTS, AND A THEN HAVE THESE ORGANIZATIONS PARTNER WITH ORGANIZATION OHS ON THE GROUND IN THE DEVELOPING WORLD TO INTRODUCE EVIDENCE-BASED INTERVENTIONS. BUT ONE OF THE THINGS THAT WE'VE REALLY BEEN FOCUSED ON IS PUTTING AN AUTISM SORT OF VERTICAL IN PLACE IN THESE OTHER ORGANIZATION OHS THAT ARE NOT AUTISM-SPECIFIC ORGANIZATIONS, SO IMAGINE A WORLD WHERE PLAN AND UNICEF AND SAVE THE CHILDREN AND WORLD VISION AND THE GLOBAL PARTNERSHIP FOR EDUCATION AND OTHERS HAVE SOMEONE WHO'S AN AUTISM EXPERT INVOLVED IN THEIR ORGANIZATION, AND PERHAPS WE COULD HAVE A SITUATION WHERE WORLD VISION, WHO HAS WI-FI ENABLED OFFICES IN RURAL GHANA, FOR EXAMPLE, CAN TRAIN THEIR COMMUNITY HEALTH WORKERS WHO GO AND ASSESS THE HEALTH OF KIDS IN GHANA OUT IN THE HARDEST TO REACH AREAS, WHAT IF YOU TAUGHT THEM VIA WEB VIDEO OR SOMETHING LIKE THAT WHAT AUTISM LOOKS LIKE, TRAIN THEM TO GO OUT AND FIND THESE FAMILYS WHO ARE OFTEN HIDDEN IN COUNTRIES LIKE THAT BECAUSE THERE'S SUCH A STIGMA ATTACHED, AND OFFERED THEM THE OPPORTUNITY, THE FAMILIES OPPORTUNITY TO COME BACK TO THOSE SAME WI-FI ENABLED OFFICES FOR SOME TRAINING, PARENT SKILLS TRAINING OR CAREGIVER SKILLS TRAINING THAT WE COULD OFFER. AND IF YOU START TO THINK ABOUT THAT, MULTIPLY THAT BY THOUSANDS AND THOUSANDS AND THOUSANDS OF OPPORTUNITIES BECAUSE THE PLANS AND UNICEFS AND SAVE THE CHILDRENS ARE DOING THE SAME THING IN ADDITION TO HUNDREDS AND HUNDREDS OF SMALLER ORGANIZATIONS AROUND THE WORLD, SO JUST PLANT THE SEED THERE FOR A CONVERSATION THAT I KNOW AUTISM SPEAKS HAS BEEN A BIG PART OF OVER THE YEARS, BUT THERE ARE OTHER ORGANIZATIONS THAT ARE DOING SOME BIG WORK. DO YOU KNOW THAT THERE'S AN INTERNATIONAL DISABILITY ALLIANCE THAT IS AN ALLIANCE OF DISABILITY ORGANIZATIONS THAT JUST CO-HOSTED THE GLOBAL DISABILITY SUMMIT IN LONDON IN THE SUMMER, AND DID YOU KNOW THAT THE INTERNATIONAL DISABILITY ALLIANCE DOESN'T HAVE AN AUTISM PARTNER BECAUSE THERE IS NO GLOBAL AUTISM ORGANIZE AND THAT'S ONE OF THE CRITERIA FOR THEIR ORGANIZATION. SO JUST SOMETHING, A SEETD TO SEED TO PLANT FOR YOU. WE'RE STILL TRYING TO FLESH OUT WHAT IT WOULD LOOK LIKE, WHO PARTNERS WOULD BE, BUT IT SEEMS LIKE THERE'S A LOT OF INTEREST IN THAT CONVERSATION. >> ANY OTHER QUESTIONS FROM THE COMMITTEE? FOR MIKE AND JADEN? WELL, AGAIN WE REALLY WANT TO THANK BOTH YOU AND JADEN FOR BEING HERE. IT'S REALLY A PLEASURE TO HAVE YOU, AND THANK YOU FOR HELPING US RECOGNIZE AUTISM AWARENESS MONTH, AND WE LOOK FORWARD TO SEEING YOU NEXT TIME. >> AWESOME. JADEN? >> BA BA. >> THERE YOU GO. [APPLAUSE] >> THANK YOU BOTH. NEXT UP, WE HAVE A PRESENTATION FROM STUART SHAPIRA, MEMBER OF THE IACC, AND CHIEF MEDICAL OFFICER AND ASSOCIATE DIRECTOR FOR SCIENCE AT THE NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES AT THE CDC, THE CENTERS FOR DISEASE CONTROL AND PREVENTION. STUART IS GOING TO BE PRESENTING TO US ABOUT A NEW TOOL, THE CENTER FOR DISEASE CONTROL AND PREVENTION AUTISM DATA VISUALIZATION PLATFORM. STUART, THANKSMENT THANKS. >> THANK YOU, DR. GORDON. THANK YOU, EVERY ONE. IT'S A REAL PLEASURE TO BE HERE ON THE LAUNCH OF THE AUTISM DATA VISUALIZATION TOOL. NOW, THIS DATA VISUALIZATION PROJECT WAS NOT JUST A CDC EFFORT, BUT ALSO INCLUDED VALUABLE INPUT FROM INDIVIDUALS IN SEVERAL OTHER FEDERAL AGENCIES, AND SOME OF THOSE INDIVIDUALS INCLUDE MICHAEL COGAN, REAM GANDAR, LAURA KAVANAUGH, HRSA, MELISSA HARRIS AT THE CENTERS FOR MEDICARE AND MEDICAID SERVICES OR CMS, AND LARRY WEXLER, AT THE DEPARTMENT OF EDUCATION. SO WHAT IS THE AUTISM DATA VISUALIZATION TOOL? IT'S AN INTERACTIVE WEBSITE THAT PROVIDES UP TO DATE AUTISM SPECTRUM DISORDER OR ASD PREVALENCE DATA AMONG CHILDREN IN THE UNITED STATES. THERE ARE FOUR DIFFERENT DATA SOURCES INCLUDED IN THE TOOL, AND YEAR AND STATE DATA ARE PRESENTED WHEN THEY ARE AVAILABLE. THE FOUR DATA SOURCES ARE THE AUTISM AND DEVELOPMENTAL DISABILITIES MONITORING NETWORK AT CDC, THE SPECIAL EDUCATION DATA FROM THE DEPARTMENT OF EDUCATION, MEDICAID DATA FROM CMS, AND NATIONAL SURVEY OF CHILDREN'S HEALTH DATA FROM HRSA. THE TOOL ALSO INCLUDES A DESCRIPTION OF HOW THE DIFFERENT DATA SOURCES WERE USED TO ESTIMATE ASD PREVALENCE. SO THE TOOL MAKES IT VERY EASY TO FIND AVAILABLE ASD PREVALENCE DATA IN EACH STATE AND IN THE U.S. OVERALL. IT HIGHLIGHTS CHANGES OVER TIME FOR SPECIFIC STATES OR COMMUNITIES. IT IMPROVES ACCESS TO DATA FOR PUBLIC HEALTH RESEARCHERS, FOR STATE HEALTH OFFICIALS, AND FOR THE PUBLIC. IT IMPROVES THE UNDERSTANDING OF ASD AND ITS IMPACT ACROSS COMMUNITIES IN THE UNITED STATES, AND IT CAN BE USED TO PLAN FOR SERVICES TO GUIDE RESEARCH AND TO INFORM POLICIES TO HELP CHILDREN WITH ASD. SO THE FIRST DATA SOURCE THAT I MENTIONED IS THE AUTISM AND DEVELOPMENTAL DISABILITIES MONITORING OR THE ADDM NETWORK FROM THE CDC. SO THE TOOL FEATURES PUBLISHED ADDM PREVALENCE ESTIMATES BETWEEN 2000 AND 2014 IN THE PARTICIPATING COMMUNITIES IN THE ADDM SITES. ADDM DATA PREVALENCE ESTIMATES INCLUDE RECORD REVIEW OF 8-YEAR-OLD CHILDREN AND COMBINES INFORMATION ACROSS COMMUNITIES. THE NUMERATOR FOR THE PREVALENCE ESTIMATES ARE CHILDREN MEETING THE ASM ADDM ASD CASE DEFINITION AND THE DENOMINATOR COMES FROM THE NATIONAL CENTER FOR HEALTH STATISTICS BRIDGE POPULATION ESTIMATES. THE LARGE SAMPLE SIZES IN THE ADDM NETWORK ALLOW FOR MORE DETAILED DATA AT STATE AND COMMUNITY LEVEL. THE SECOND DATA SOURCE FROM THE DEPARTMENT OF EDUCATION ARE SPECIAL EDUCATION INFORMATION. THESE DATA INCLUDE SPECIAL EDUCATION PRIMARY EXCEPTIONALITY SO THE NUMERATOR IS INDIVIDUALS WITH DISABILITIES EDUCATION ACT AUTISM CLASSIFICATION FOR 6 TO 17-YEAR-OLD CHILDREN AND ADOLESCENTS, AND THERE ARE INDIVIDUAL STATE COUNTS AS WELL AS U.S. COUNTS OVERALL. AND THE DENOMINATOR IS THE NATIONAL CENTER FOR EDUCATION STATISTICS SCHOOL ENROLLMENT COUNTS FOR GRADES 1 THROUGH 12. THESE ARE PUBLICLY AVAILABLE DATA FROM ALMOST EVERY STATE AND AVAILABLE FOR ALMOST EVERY YEAR. CURRENTLY THERE ARE DATA AVAILABLE THROUGH 2015, BUT THE TOOL WILL SOON BE UPDATED WITH ANOTHER YEAR OF DATA FROM 2016. THE THIRD DATA SOURCE, MEDICAID DATA COMING FROM CMS, THE DATA SOURCE IS KNOWN AS MEDICAID MAX, WHERE MAX IS MEDICAID ANALYTIC EXTRACT, AND THE NUMERATOR IS CHILDREN WITH AN AS DMID MEDALLION CAL BILLING COLD MEDICAL BILLING CODE OR ICD CODE FOR ONE OR MORE INPATIENT OR TWO OR MORE OUTPATIENT CLAIMS IN A GIVEN YEAR. AND THIS IS THE SAME ALGORITHM THAT CMS ENDORSES IN ORDER TO IDENTIFY CHILDREN WITH AUTISM IN THE MEDICAID DATA. THE DENOMINATOR IS CHILDREN ENROLLED IN MEDICAID DURING EACH YEAR. AND DATA ARE AVAILABLE FOR 2000 TO 2012 FOR MOST STATES. AND THE LAST DATA SOURCE OF THE FOUR IS THE NATIONAL SURVEY OF CHILDREN'S HEALTH FROM HRSA. AND THE ESTIMATES IN THE TOOL MATCH THE PUBLISHED NATIONAL SURVEY OF CHILDREN'S HEALTH DATA DATA. NOW THIS SURVEY USES COMPLEX SURVEY DESIGN AND WEIGHTS IN ORDER TO PROVIDE NATIONAL AVERAGES. THE NUMERATOR IS CHILDREN WITH ASD OR MORE RECENTLY, CHILDREN WITH CURRENT ASD, SO THE SURVEY QUESTIONS HAVE CHANGED ON ASD OVER TIME. THE DENOMINATOR IS CHILDREN PARTICIPATING IN THE NATIONAL SURVEY OF CHILDREN'S HEALTH EACH YEAR AND AS I MENTIONED, IT'S A NATIONALLY REPRESENTATIVE COMPLEX SURVEY SAMPLE. THE YEARS OF AVAILABLE DATA ARE SHOWN ON THE SLIDE, AND THE SURVEY WAS REDESIGNED BEGINNING IN 2016. SO SOME OF THE FEATURES OF THE TOOL ARE THAT THE DATA ARE DOWNLOADABLE, AND THEY ARE DOWNLOADABLE INTO SPREADSHEETS TO ALLOW FOR CUSTOM ANALYSES. THE TOOL CONTAINS LINKS TO THE PRIMARY SOURCES OF THE DATA, AS WELL AS DEEPER TECHNICAL NOTES AND OTHER INFORMATION FOR EACH DATA SOURCE AND UPDATES AS NEW DATA ARE AVAILABLE ARE BEING MADE TO THE TOOL. SO AS I MENTIONED THAT THE SPECIAL EDUCATION UPDATES WILL OCCUR SOON FOR A NEW YEAR OF DATA. SO THE INDIVIDUALS AT CDC WHO WERE INVOLVED IN THE DEVELOPMENT OF THE TOOL ARE SHOWN ON THIS SLIDE, AND THE REAL SHAKERS AND MOVERS INVOLVED IN THE DEVELOPMENT ARE SHOWN IN BOLD FONT, AND THEY INCLUDE PATTY DIETZ, BRUCE HEATH, CHRISSY HILLARD, MATTHEW MAENNER AND SARABETH MATHIS. I THOUGHT IT WOULD BE BEST TO GO TO THE TOOL AND SHOW FOLKS HOW EASY IT IS AND HOW THE DATA ARE LAID OUT. SO THE LINK IS SHOWN ON THIS SLIDE. AND BY CLICKING ON IT, IT TAKES US DIRECTLY TO THE TOOL. IT'S HOSTED ON A CDC WEBSITE . AND AS I SCROLL A LITTLE BIT DOWN THE TOOL, THERE ARE FIVE BUTTONS AT THE TOP THAT TAKE THE USER TO VARIOUS SECTIONS OF THE TOOL, AND THEY'RE LABELED DATA, EXPLORE, METHODOLOGY, ABOUT, A AND RESOURCES. NOW, RATHER THAN CLICKING ON THESE BUTTONS AND JUMPING AROUND,LY JUST , I WILL JUST SCROLL DOWN THE TOOL AND TALK ABOUT WHAT'S IN VARIOUS SECTIONS. SO IN THE FIRST SECTION, DATA, THIS SECTION DESCRIBES THE SOURCES, THE FOUR DATA SOURCES FOR THE TOOL, AND PROVIDES ADDITIONAL INFORMATION ABOUT THEM FOR THE USER, SO THESE FOUR TABS AT THE TOP WERE ON SPECIAL EDUCATION CHILD COUNT, AND ONE CAN CLICK ON NATIONAL SURVEY OF CHILDREN'S HEALTH AND OBTAIN MORE INFORMATION, MEDICAID, AND FINALLY THE ADDM NETWORK. SCROLLING FURTHER DOWN, ONE CAN START TO VISUALIZE THE DATA AND I WILL ORIENT EVERYONE TO THE CHARTS BECAUSE THESE GRAPHS ARE VERY SIMILAR, SO ON THE SIDE, THIS IS THE PREVALNCE OF ASD PER A THOUSAND CHILDREN. AND ACROSS THE BOTTOM ARE YEARS, FOR EXAMPLE HERE, 2000, UP TO 2014. AND EACH OF THESE DATA POINTS IF ONE HOVERS A CURSOR OVER THE POINT, IT SHOWS THE YEAR AS WELL AS THE PREVALENCE NUMBER. SO FOR EXAMPLE, THIS ONE FOR 2000, IS SHOWING PREVALENCE OF 6.7 PER THOUSAND CHILDREN. SO ONE CAN DO THAT FOR ALL OF THE DATA POINTS, AND WHAT WE'RE LOOKING AT HERE AT THE TOP ABOVE THE CHART, THERE ARE TWO DROP DROPDOWN LISTS, SO ONE CAN LOOK AT ADDM DATA AND THEN SHIFTING TO MEDICAID DATA, THIS IS FOR THE U.S. OR TOTAL OVERALL, AND AGAIN, DURING THOSE YEARS, AND CAN THEN SIMILARLY GO TO NATIONAL SURVEY OF CHILDREN'S HEALTH, AND THERE ARE FOUR DATA POINTS DURING THIS PERIOD OF TIME AND SPECIAL EDUCATION OR CHILD COUNTS THIS IS FOR THE U.S. OVERALL, BUT ONE CAN LOOK AT INDIVIDUAL STATES OR COMMUNITIES OF INTEREST. SO THIS DROP DOWN MENU TO THE RIGHT LISTS ALL THE STATES AND COMMUNITIES AND SO FOR EXAMPLE, IF I CLICK ON MARYLAND, THIS SHOWS MARYLAND DATA FROM 2010 TO 2014, THE PREVALENCE COMING FROM SPECIAL EDUCATION COUNTS. AS WELL AS MEDICAID DATA IN MARYLAND, ADDM NETWORK DATA IN MARYLAND AND SO ON. SO SCROLLING DOWN, THERE'S ALSO A HEAT MAP APPROACH TO THE PREVALENCE DATA, SO THIS MAP OF THE UNITED STATES, AND I'LL ORIENT YOU TO THE KEY, THE LIGHTEST BLUE COLOR IS PREVALENCE OF LESS THAN 10 PER THOUSAND CHILDREN, SLIGHTLY DARKER BLUE IS 10 TO 20, 20 TO 30, AND FINALLY 30 OR OH MORE CHILDREN PER THOUSAND. AND SO WE'RE NOW ALSO ON THE ADDM NETWORK FOR THE YEAR 2014. WE COULD GO BACK TO 2008 FOR THE ADDM NETWORK AND SHOW THE PREVALENCE IN THE VARIOUS IS STATES. MEDICAID WHICH COVERS MOST STATES AND THIS IS AGAIN 2008, ONE CAN LOOK AT OTHER YEARS LIKE 2012 FOR MEDICAID, SO ON AND SO FORTH, AND THEN THE OTHERS ARE SHOWN HERE AS WELL, THE NATIONAL SURVEY OF CHILDREN'S HEALTH AS WELL AS SPECIAL EDUCATION COUNTS. SO THERE'S A LOT OF INTEREST IN THE DIFFERENCE IN PREVALENCE BETWEEN BOYS AND GIRLS AND ONE CAN ALSO VIEW THOSE DATA. THEY'RE ONLY AVAILABLE FOR THE ADDM NETWORK BECAUSE OF THE SIZE AND THE WAY THE DATA ARE COLLECTED, ONE CAN CALCULATE PREVALENCE OF BOYS VERSUS GIRLS. SO THIS IS FOR THE U.S. TOTAL OVERALL IN 2014, THE PREVALENCE NUMBERS ARE SHOWN HERE TO THE RIGHT, SO OVERALL WAS 16.8 PER THOUSAND, BOYS 26.6 PER THOUSAND, GIRLS 6.6 PER THOUSAND. AND ONE CAN LOOK AT VARIOUS DATES IN THE ADDM NETWORK DATA COLLECTION OF THE RATIO BETWEEN BOYS AND GIRLS AND OVERALL, OR ONE CAN VIEW INDIVIDUAL STATES, SO FOR EXAMPLE, NORTH CAROLINA OR -- IF THERE ARE NO DATA, IT WILL SAY DATA ARE NOT AVAILABLE FOR EITHER A PARTICULAR YEAR OR A PARTICULAR JURISDICTION. BUT HERE'S ALABAMA, FOR EXAMPLE. ANOTHER DEMOGRAPHIC FOR WHICH THERE ARE DATA PRESENTED IS RACE/ETHNICITY. THIS IS SHOWN IN A GRAPHICAL FORMAT UP TO 2014. THIS IS ALSO ADDM NETWORK DATA. ON THESE GRAPHS, NON-HISPANIC WHITE ARE SHOWN IN GREEN, NON-HISPANIC BLACK IN BLUE, HISPANIC IN PURPLE, AND ASIAN PACIFIC ISLANDER IN THIS ORANGE COLOR. SO THIS IS THE U.S. OVERALL DURING THIS PERIOD. ONE CAN LOOK AT INDIVIDUAL SITES IN THE ADDM NETWORK SUCH AS NEW JERSEY, SHOWING THE PREVALNCE AND THE CHANGES OVER TIME BETWEEN THE VARIOUS RACIAL ETHNIC GROUPS AND THE IDENTIFICATION OF CHILDREN WITH AUTISM SPECTRUM DISORDER, ALABAMA ANOTHER EXAMPLE AND SO ON. NOW THIS LAST SECTION I'M SHOWING EXAMPLES OF IS CALLED EXPLORE, AND I THINK THIS IS REALLY COOL BECAUSE ONE CAN COMPARE TWO DATASETS TOGETHER OR COMPONENTS WITHIN A SINGLE DATASET, SO FIRST ACROSS THE TOP HERE, THESE ARE THE FOUR DATA SOURCES, THE SPECIAL EDUCATION CHILD COUNT AND THE BLUE DOTS RE SENT THE YEARS IN WHICH THOSE DATA ARE AVAILABLE, FROM 2000 UP TO 2016. THE NATIONAL SURVEY OF CHILDREN'S HEALTH ALWAYS COMBINED TWO YEARS OF DATA, SO HERE 2003 TO 2004, 2007 TO 2008. UNDER THIS, THE ORANGE DOTS IN MEDICAID AND THEN THE ADDM DATA IN THESE PURPLE DOTS AT THE BOTTOM. SO IS THIS THE U.S. OVERALL, BUT IF YOU ARE INTERESTED IN A SINGLE STATE, LET'S SAY WE WERE INTERESTED IN DATA AVAILABLE ON HAWAII, THERE ARE ONLY SPECIAL EDUCATION DATA AND MEDICAID DATA AVAILABLE ON THAT STATE. BUT THERE ARE DATA AVAILABLE FOR EVERY STATE AND EVERY JURISDICTION IN AT LEAST ONE OF THE FOUR DATASETS. NOW WHAT'S VERY COOL ABOUT THIS IS LET'S SAY I LOOK AT THE U.S. OVERALL, I CAN NOW COMPARE THE U.S. -- THE PREVALENCE OF THE U.S. OVERALL IN THE ADDM NETWORK, AND THAT'S WHAT'S SHOWN HERE ON THE GRAPH IN PURPLE, I CAN COMPARE THAT WITH ANOTHER LOCATION, SO CAN I LOOK AT, LET'S SAY, ARKANSAS AND SO I CAN COMPARE THE U.S. OVERALL IN PURPLE WITH THE ARKANSAS PREVALENCE SHOWN IN BLUE. OR I CAN PREPARE THE U.S. OVERALL WITH GEORGIA AND THAT THEY'RE VERY SIMILAR BETWEEN THE GEORGIA PREVALENCE AND THE U.S. OVERALL PREVALENCE. I CAN ALSO COMPARE BETWEEN DATA SYSTEMS, SO THIS IS NOW COMPARING THE ADDM NETWORK DATA SHOWN IN YELLOW WITH MEDICAID DATA, SHOWN IN -- I'M SORRY, THE ADDM NETWORK DATA SHOWN IN PURPLE WILL WITH THE MEDICAID DATA SHOWN IN YELLOW. AND I ALWAYS HAVE TO LOOK AT THE LEGEND HERE TO SEE WHAT DOES THE YELLOW STAND FOR, WHAT'S THE PURPLE STAND FOR. SO YOU CAN COMPARE INDIVIDUAL STATES WITH OVERALL U.S. DATA OR YOU CAN COMPARE ESTIMATES BETWEEN TWO DIFFERENT DATA SOURCES. SO FURTHER DOWN, THERE'S INFORMATION FOR HOW THE DATA ARE GATHERED AND SPECIFICS ON THAT FOR EACH OF THE DATA SOURCES, ADDM NETWORK, MEDICAID, SO ON, NATIONAL SURVEY OF CHILDREN'S HEALTH, SO SIGNIFICANT ADDITIONAL INFORMATION, THEN AT THE BOTTOM, I'LL SHOW THAT THERE ARE RESOURCES PROVIDED FOR EACH OF THE DATA SOURCES, AS WELL AS EXTENSIVE TECHNICAL NOTES FOR EACH OF THE DATA SOURCES THAT THE USER CAN VIEW. SO IN SUMMARY, THIS IS -- I HOPE YOU'LL APPRECIATE THIS IS VERY USER-FRIENDLY, VERY EASY TO NAVIGATE, AND A LOT OF INFORMATION AT THE FINGERTIPS FOR USERS WHO ARE INTERESTED IN LEARNING MORE ABOUT THE PREVALENCE OF AUTISM SPECTRUM DISORDER. SO THANK YOU VERY MUCH FOR YOUR TIME. [APPLAUSE] >> THANK YOU, STUART. THAT'S REALLY WONDERFUL TO HAVE THIS RESOURCE, AND I JUST WANT TO POINT OUT ONE FEATURE WHICH DID YOU NOT FOCUS ON, BUT BENEATH THE VISUALIZATION TOOLS ARE DESCRIPTIONS OF THE DATA SOURCES AND MORE IMPORTANTLY, DESCRIPTIONS OF WHAT THE QUALITY AND MANNER BY WHICH THESE DATA ARE ACQUIRED AND HOW THAT INFORMS THE ESTIMATES. I THINK THAT'S REALLY IMPORTANT WHEN WE TALK ABOUT PREVALENCE, IT'S NOT JUST NUMBERS, BECAUSE AS YOU WERE YOU SHOWING US IMPLICIT IN THE DATA YOU WERE SHOWING US, PREVALENCE DIFFERS DEPENDING ON THE METHOD USED, AND THAT EXPLANATION AT THE BOTTOM TO EXPLAIN THOSE DIFFERENCES IS REALLY, REALLY CRUCIAL. >> ABSOLUTELY. >> SO WE WANT TO THANK YOU FOR THAT. I HAVE A COUPLE QUESTIONS. LET'S START WITH JON AND THEN WE'LL GO WITH LOUIS. >> YOUR ADDM REPORTS HAVE ALWAYS STATED THAT YOU WERE ESTIMATING PREVALENCE AMONG 8-YEAR-OLDS. >> CORRECT. >> TODAY YOU'RE HERE SHOWING US A PREVALENCE TOOL WITH THREE OTHER DATA SOURCES. THOSE DATA SOURCES SHOULD HAVE DATA FOR KIDS OF ALL AGES UP TO 17, BUT YOU DON'T MENTION ANYTHING ABOUT AGE IN THAT, AND I WONDER WHY IS THAT? >> SO IN THE TOOL, IT'S DESCRIBED AT THE BEGINNING THE AGE RANGES FOR INDIVIDUALS THAT -- AND I MENTIONED THAT ON THE SLIDE, SO FOR EXAMPLE, FOR SPECIAL EDUCATION, IT WAS 6 TO 17-YEAR-OLD CHILDREN AND ADOLESCENTS. MEDICAID IS ALSO CHILDREN IN THAT BROAD AGE RANGE AS WELL AS THE NATIONAL SURVEY OF CHILDREN'S HEALTH. SO I BELIEVE THAT IT'S MENTIONED IN THE DESCRIPTION OF THE DATA SOURCES WHERE THE DATA COME FROM, THE AGE RANGE. SO YOU'RE CORRECT THAT THE ADDM DATA IS FOCUSED ON 8-YEAR-OLDS, THE OTHER DATA SOURCES INCLUDE A BROADER RANGE OF INDIVIDUALS. >> IF I COULD MAKE A SUGGESTION THEN TO CLARIFY THAT, I WAS LOOKING AT YOUR TEXT BEFORE I ASKED THE QUESTION, AND I SAW, FOR EXAMPLE, A TEXT SAID THAT DATA REPRESENTS CHILDREN ZERO TO 17 IN ONE EXAMPLE, AND IT WASN'T CLEAR IF YOU HAD DATA SORTED BY THE AGE OF THE CHILD AND YOU HAD ONLY CHOSEN TO DISPLAY 8 TO MAKE IT DIRECTLY COMPARABLE TO ADDM OR IF YOU WERE SHOWING THAT TOTALED RANGE. SO I DO SEE WHAT YOU MEAN, BUT -- >> SO GREAT, THANKS FOR POINTING THAT OUT. WE'LL MAKE SURE THAT IT'S CLEAR THAT THE AGE OR AGE RANGE FOR EACH DATA SOURCE ARE CLEARLY STATED OH SO THE SO THE USER UNDERSTANDS WE DIDN'T LIMIT THE OTHER DATA SOURCES JUST TO 8-YEAR-OLDS. THEY INCLUDE THE BROADER AGE RANGE IN THE OTHER DATA SOURCES. THANKS. >> LOUIS? >> I'M JUST KAUR JUST WHAT YOU CURIOUS WHA T YOU THINK THIS DATA REALLY MEANS, WHEN WE'RE DEALING WITH A DISORDER THAT'S GOT A VERY HIGH GENETIC CONTRIBUTION. I MEAN, ARE YOU REALLY LOOKING AT DIFFERENCES IN AUTISM BETWEEN STATES OR DIFFERENCES OVER TIME OR ARE YOU SIMPLY LOOKING AT DIFFERENCES IN ACCESS TO HEALTH CAROL INTERPRETATION HEALTHCARE, INTERPRETATION OF HEALTHCARE. I'M JUST WORRIED THAT PEOPLE WILL MISINTERPRET THIS. >> I THINK IT'S ACTUALLY ALL OF THE ABOVE, SO DIFFERENCES IN SERVICES, DIFFERENCES IN RECOGNITION OF AUTISM, DIFFERENCES IN HOW CHILDREN ARE ASSIGNED TO AUTISM EXCEPTIONALITY CLASSIFICATION OR DIFFERENCES IN HOW PRACTITIONERS IDENTIFY AUTISM SPECTRUM DISORDER, DIFFERENCES IN HOW PHYSICIANS CODE FOR AUTISM SPECTRUM DISORDER IN CLAIMS DATA, SO THERE ARE A LOT OF VARIABLES IN THIS, BUT I THINK THAITS IMPORTANT TO THAT IT'S IMPORTANT TO PROVIDE THIS INFORMATION FOR RESEARCHERS, FOR PUBLIC HEALTH OFFICIALS, FOR THE PUBLIC TO UNDERSTAND THAT THERE IS NO ONE SINGLE NUMBER FOR AUTISM SPEC ARE TRUM DISORDER, SPECTRUM DISORDER, THAT IT'S A PREVALENT CONDITION AND THAT IT INDICATES THAT AS CHILDREN GROW AND MATURE INTO ADOLESCENTS AND ADULTS, THERE ARE NEEDS THAT THESE INDIVIDUALS WILL HAVE. >> I WOULD JUST SAY, YOU KNOW, MY CONCERN WOULD BE THAT IT CAN SPAWN SOME -- WHAT I THINK ARE LIKELY TO BE FALSE IMPRESSIONS TOO, THAT AUTISM IS A SPREADING EPIDEMIC LIKE MEASLES THAT, YOU KNOW, YOU'RE EITHER SAFER IN MISSISSIPPI VERSUS CALIFORNIA, WHICH I -- FROM AUTISM, I MEAN, I THINK MANY OF THESE DIFFERENCES ARE JUST -- DO GIVE RISE TO MISINTERPRETATION OF WHAT'S REALLY GOING ON. >> THAT'S A VERY GOOD POINT. THANK YOU. >> I JUST WANT TO ADD TO THAT POINT, I THINK, STUART, ONE OF THE THINGS THAT YOU SAID IS SOMETHING THAT PUBLIC HAS CHALLENGE UNDERSTANDING. WE'VE ENCOUNTERED THIS IN OUR DISCUSSIONS WITH THE ADVOCACY AND PUBLIC COMMUNITIES AND EVEN LEGISLATORS IN OTHER DISEASE CATEGORIES THAT POINT THAT PREVALENCE IS NOT A SINGLE NUMBER. THIS WEBSITE REALLY NICELY ILLUSTRATES THE THAT. PREVALENCE VARYING ACROSS GEOGRAPHY, THOUGH, I'M NOT SURE AND I HAVEN'T READ THROUGH THE DETAILS DOWN AT THE BOTTOM OF THAT PAGE, BUT IT WOULD BE IMPORTANT TO NOTE THAT THERE MIGHT BE MANY REASONS FOR PREVALENCE VARYING BASED ON GEOGRAPHY HAVING TO DO NOT WITH THE BIOLOGY OF THE ILLNESS. BUT AGAIN, JUST TO COMMEND YOU ONE MORE TIME AND COMMEND THE CDC FOR PUTTING THIS OUT THERE, YOU KNOW, WHAT GETS OUT INTO THE PRESS QEET OFTEN IS THE ADDM NUMBER BECAUSE YOU HAVE A RELEASE TO IT AND IT SAYS THIS IS THE NUMBER THAT WE'VE GOTTEN, AND DESPITE ALL THE ACTUALLY IMPORTANT AND SCIENTIFICALLY ACCURATE DISCLAIMERS THAT YOU PUT OUT THERE WHEN YOU PUT THE NUMBER OUT, PRESS OFTEN JUST REPEATS THE NUMBER. >> CORRECT. >> AND SO HAVING THIS OUT THERE FOR PRESS TO REFER TO IS IMPORTANT. I THINK IT'S ALSO IMPORTANT THAT WHEN CDC DOES RELEASE THAT ADDM NUMBER FROM YEAR TO YEAR, THAT THEY REMIND THEM THAT IT'S NOT JUST ONE NUMBER. MAYBE YOU DO IT ALREADY. I KNOW THAT YOU DO A GOOD JOB OF EXPLAINING WHY THE ADDM NUMBER MAY NOT BE REPRESENTATIVE, BUT REFERRING THEM TO EACH THIS PAGE EACH TIME THAT THING IS RELEASED MAY BE A GOOD THING GOING FORWARD. >> THAT'S A GOOD POINT AND WE DO FOCUS ON TRYING TO MAKE IT CLEAR TO THE MEDIA TO POLICY MAKERS, TO THE PUBLIC, TO RESEARCHERS THAT THE ADDM NUMBER IS REPRESENTATIVE OF JUST THE COMMUNITIES THAT ARE INVOLVED IN COLLECTING DATA ON AUTISM PREVALENCE, SO IT'S NOT NATIONALLY REPRESENTATIVE, IT ONLY REFLECTS THOSE 11 COMMUNITIES, FOR EXAMPLE, IN THE PREVIOUS REPORT, IT'S NOT NECESSARILY THE ENTIRE STATE. IN MOST CASES, IT'S ONLY A SEGMENT OF THE STATE. AND BUT THE ADDM DATA IS SO RICH THAT THE RESEARCHERS AND THE GROUP ARE ABLE TO DRILL DOWN TO THINGS SUCH AS THE AGE OF INITIAL DIAGNOSIS OF AUTISM, THE AGE AT WHICH THE CHILD IS BEGINNING TO RECEIVE SERVICES, THE DIFFERENCES IN DEMOGRAPHICS, AND THE PREVALENCE AND DIFFERENCES IN SEX IN PREVALENCE. SO WE ARE KEENLY AWARE THAT IT'S OFTEN MISUNDERSTOOD BY THE MEDIA THAT THE NUMBER MEANS THE U.S. NUMBER, BUT WE STRIVE TO TRY AND MAKE THAT CLEAR IN THE INFORMATION THAT WE PUT OUT. BUT I AGREE, POINTING THE MEDIA AND OTHERS TO THIS SITE WILL BE VERY HELPFUL IN THE FUTURE. >> DAVID, THEN ALISON, THEN JOHN, THEN LARRY. >> IT IS A REALLY BEAUTIFULLY PUT TOGETHER TOOL AND EASY TO EXPLORE. JUST WANT TO ECHO LOUIS' POINT, THAT DATA ARE PUT TOGETHER AND PRESENTED ALMOST WITHOUT COMMENT, AND YET CONTRADICT EACH OTHER, SO FOR EXAMPLE, IF YOU TAKE THE SURVEY DATA, THE NATIONAL CHILDREN'S SURVEY, THE NUMBERS ARE BETWEEN TWO AND THREE TIMES HIGHER THAN ANY OTHER OF THE PREVALENCE ESTIMATES. I DON'T KNOW IF YOU'RE USING THE -- HAS A HEALTHCARE PROVIDER EVER TOLD YOU OR DOES YOUR CHILD CURRENTLY HAVE, BECAUSE YOU KNOW THERE ARE HUGE -- AS I'M SURE YOU KNOW, THERE ARE HUGE DIFFERENCES -- >> CORRECT >> -- IN THOSE NUMBERS, AND YET MEDICAID, WHICH HAS A MUCH HIGHER TREATED PREVALENCE OF AUTISM THAN PRIVATE INSURANCE NUMBERS ARE A THIRD OF THAT. SO I DON'T KNOW WHO THE HEALTHCARE PROVIDERS ARE THAT ARE -- CLEARLY THERE'S SOME MISCONCEPTION OF THE IN THE SURVEY, BUT THE NUMBERS DON'T ADD UP, AND EVEN THE DISTRIBUTIONS OF THE DATA OVER TIME AREN'T THE SAME. AND PREVALENCE IS ONE NUMBER. WHAT'S NOT -- WHAT LEADS TO MORE THAN ONE NUMBER IS HOW WE DEFINE THE CONDITION AND THE METHODS THAT WE USE TO ASCERTAIN IN A GIVEN SAMPLE. BUT THERE IS A TRUE PREVALENCE OUT THERE BASED ON A CERTAIN DEFINITION, AND I THINK IT WOULD BE REALLY IMPORTANT FOR THE CDC NOT TO REFER TO THESE AS PREVALENCE DATA, BUT AS EITHER SURVEILLANCE DATA OR DATA THAT ARE ASCERTAINED IN CERTAIN WAYS, AND TO BE A LITTLE MORE EXPLICIT IN A LARGER FONT ABOUT WHAT THE LIMITATIONS ARE OF THE METHODS THAT ARE USED TO COLLECT THE DATA. I APPRECIATE VERY MUCH RESEARCHERS LIKE MAUREEN DERKIN WHO HAS A RECENT PAPER TRYING TO FIGURE OUT WHETHER THERE MAY BE SOME ASCERTAINMENT BIAS, FOR EXAMPLE, IN HOW -- IN WHY THE NUMBERS FOR HISPANIC CHILDREN ARE LOWER THAN -- AND FINDING -- THERE'S A LITTLE BIT BUT IT CAN'T ACCOUNT FOR THE DIFFERENCES, AND POINTING IN DIFFERENCES IN ACCESS TO OF MAY BE DRIVING THAT. IF THAT'S WHAT'S DRIVING IT, THEN IT'S NOT A PREVALENCE ESTIMATE. AND I THINK IT'S REALLY IMPORTANT TO LOOK -- YOU KNOW THAT THIS IS MY SOAP BOX AND I'VE BEEN ON IT A WHILE, BUT I THINK IT'S VERY IMPORTANT THAT THE CDC APPROACH THESE NUMBERS MORE CRITICALLY AND SHARE CONCERNS ABOUT DIFFERENCES IN ASCERTAINMENT ON THE WEBSITE WHEN THEY'RE MAKING THESE DATA AVAILABLE TO THE PUBLIC FOR EXACTLY THE REASONS TA LOUIS THAT LOUIS DESCRIBED. >> SO VERY GOOD POINTS. THANK YOU VERY MUCH. I AGREE THAT IT'S NOT BLACK AND WHITE. THERE IS A LOT OF FINE-TUNING TO UNDERSTANDING HOW THESE DATA ARE COLLECTED, AND YOU'RE CORRECT, WHATEVER THE MAGICAL PREVALENCE NUMBER IS, IF ONE WERE ABLE TO DO A VERY DETAILED TEST ON EVERY SINGLE CHILD CHILD AT ONE POINT IN TIME INSTANTANEOUSLY AND MAKE A DIAGNOSIS OF AUTISM SPECTRUM DISORDER, WHICH HAS CHALLENGES IN AND OF ITSELF SINCE IT'S A BEHAVIORAL PHENOTYPE AND NOT SOMETHING YOU CAN JUST GET A YES OR NO ANSWER TO FROM A BLOOD TEST, BUT IF ONE WERE MIRACULOUSLY ABLE TO DO THAT FOR A LARGE SEGMENT OF THE POPULATION, ONE COULD THEN IDENTIFY THAT PRECISE NUMBER, SO THESE ARE ALL ESTIMATES AROUND THAT NUMBER, WHATEVER IT IS, USING VARIOUS METHODOLOGIES AS YOU POINTED OUT AND THE METHODOLOGIES ALL DIFFER FOR THE FOUR DATA SOURCES, SO THE NUMBERS, EVEN THOUGH THEY'RE CALLED PREVALENCE ESTIMATES, THESE ARE ESTIMATES BASED ON THE DATA SOURCES THEMSELVES AND YOU'RE RIGHT, MAYBE IT'S SURVEILLANCE RATHER THAN PREVALENCE, TRUE PREVALENCE, BUT I THINK IT'S IMPORTANT TO POINT OUT THESE DIFFERENCES SO THAT THOSE WHO ARE INTERESTED IN AUTISM PREVALENCE UNDERSTAND THE COMPLEXITY OF COMING UP WITH A NUMBER, BUT I THINK THE BOTTOM LINE IS THAT THERE ARE A LOT OF CHILDREN WHO HAVE ASD AND THEY ARE GROWING INTO ADOLESCENTS AND ADULTS, AND AS CHILDREN, THEY REQUIRE EXTENSIVE SERVICES AND WILL CONTINUE TO DO SO AS THEY GROW INTO ADULTS AND THOSE PREVALENCE ESTIMATE NUMBERS SEEM TO BE GOING UP IN ALL DATA SOURCES, AND WHETHER IT'S BETTER RECOGNITION OR BETTER RECEIPT OF SERVICES OR BETTER IDENTIFICATION, THOSE ARE ALL FEEDING INTO T BUT STILL, OUR CHALLENGE IS TO MAKE SURE THAT THESE CHILDREN, AND AS THEY AGE, CONTINUE TO HAVE SERVICES THAT THEY NEED TO THRIVE. >> WELL SAID. ALISON? >> I AGREE WITH THAT, AND I THINK IN THE ADVOCACY COMMUNITY, THE VALUE OF A TOOL LIKE THIS WOULD BE IN USING TO PLAN FOR SERVICES AND USING TO TRY TO EFFECT POLICY CHANGES AT THE STATE AND FEDERAL LEVELS. SO WE'VE TALKED A LOT OVER THE PAST YEARS ABOUT THE CDC NEEDING TO GET MORE GRANULAR WITH REGARD TO THE DATA, NOT JUST THE NUMBER OF PEOPLE WHO HAVE AUTISM BUT HOW MANY HAVE INTELLECTUAL DISABILITY AS WELL AS AUTISM BECAUSE FOR EXAMPLE THE SERVICES NEEDS OF SOMEONE WITH INTELLECTUAL DISABILITY VARY GREATLY FROM SOMEONE WHO HAS AVERAGE OR ABOVE AVERAGE I.Q. SEMI LARLY, PLANNING SIMILARLY, PLANNING F OR PEOPLE THAT HAVE CO-OCCURRING PSYCHIATRIC CONDITIONS. I KNOW BACK IN 2014, THE ADDM NETWORK STARTED TO COLLECT THIS GRANULAR LEVEL DATA AND THAT HAS BEEN INCREDIBLY HELPFUL FOR US, AND I WOULD ENCOURAGE YOU IN THE 2.0 VERSION OF THIS TOOL TO INCORPORATE SOME OF THOSE DATA BECAUSE THEY ARE REALLY KEY TO OUR ABILITY TO EFFECT MEANINGFUL POLICY CHANGE. >> THANK YOU, ALISON. >> JOHN. >> I BELIEVE THAT IT IS OF VITAL IMPORTANCE THAT AMERICANS BE ABLE TO TRUST OUR PUBLIC HEALTH AGENCIES AND WHAT THEY TELL US, AND I THINK WE ARE IN A VERY UNFORTUNATE POSITION WHERE THERE IS A FUNDAMENTAL BREAKDOWN OF TRUST BETWEEN THE AUTISM COMMUNITY AND CDC. AND WHAT CONCERNS ME HERE IS THAT I SEE IN THIS TOOL THE POTENTIAL FOR FURTHERING MISTRUST BECAUSE CDC DOESN'T TAKE CLEAR POSITIONS TO EXPLAIN THE QUESTIONS THAT PEOPLE SHOULD BE ASKING. SO FOR EXAMPLE, LOUIS RAISED A VERY GOOD POINT. THERE IS ABSOLUTELY NO EVIDENCE THAT THERE IS A MATERIAL DIFFERENCE IN AUTISM RATES IN MONTANA OR NEW JERSEY. AND YET THEY ARE STRIKINGLY DIFFERENT IN YOUR REPORTS, AND YOU PROVIDE AUTISM BY STATE AS IF AUTISM BY STATE IS A MEANINGFUL NUMBER. SO THE QUESTION THE PUBLIC ASKS IS THEY SAY WHAT'S GOING ON IN NEW JERSEY? IS THERE AUTISM THAT'S CAUS CAUSED BY TOXIC WASTE? WHAT CAUSES IT? WHEN IN FACT, YOU AND CDC COULD MAKE A CLEAR STATEMENT, YOU COULD SAY, WE DON'T HAVE EVIDENCE OF A REASON THAT AN AUTISM RATE WOULD BE DIFFERENT, AND WE BELIEVE THAT IT IS A DIFFERENCE IN ASCERTAINMENT. SO CDC COULD GUIDE THE CONVERSATION IN BOTH A CONSTRUCTIVE AND SCIENTIFICALLY CORRECT DIRECTION, AND I THINK THAT'S A REALLY IMPORTANT THING TO DO. THEN WHEN LOOKING AT THE DATA, AS YOU POINTED OUT, THERE IS A HUGE DIFFERENCE BETWEEN THE NATIONAL SURVEY OF CHILDREN'S HEALTH, THE SPECIAL ED DATA AND THE ADDM DATA, AND AS DAVID RIGHTLY POINTS OUT, THEY CAN'T ALL BE RIGHT. SO CDC MUST HAVE A POSITION ON THAT. WHEN THE CHILDREN'S HEALTH SURVEY SAYS THAT THERE ARE THREE TIMES AS MANY AUTISTIC PEOPLE AS MEDICAID OR TWICE AS MANY AS SPECIAL ED, WHAT DO WE BELIEVE? DO WE BELIEVE THAT AS ALISON SUGGESTED, THAT A SIGNIFICANT NUMBER OF AUTISTIC CHILDREN IDENTIFIED IN THE SURVEY OF CHILDREN'S HEALTH HAVE SUFFICIENT COGNITIVE SKILLS THAT THEY DO NOT NEED SPECIAL ED SUPPORT? THAT WOULD BE A VERY SIGNIFICANT FINDING AND IT WOULD BE IMPORTANT FOR US TO SAY IT. DO WE BELIEVE THAT THE ADDM DATA IS HIGHER BECAUSE THE ADDM CENTERS HAVE A SUPERIOR ABILITY TO RECOGNIZE AUTISM AND IF THAT'S SO, THESE OTHER GROUPS ARE FAILING IN A DUTY TO AMERICAN CHILDREN. AND I THINK THAT THAT'S THE KIND OF THING THAT CDC SHOULD BE EXPLAINING IN ORDER TO BUILD PUBLIC TRUST IN THE AGENCY. AND I WOULD SUGGEST TO YOU THAT YOU'VE COLLECTED A LOT OF VALUABLE INFORMATION HERE, AND IT IS REALLY, REALLY IMPORTANT TO ME AS A REPRESENTATIVE OF THE AUTISM COMMUNITY THAT WE DELIVER IT WITH THE EXPLANATIONS THAT ALLOW PEOPLE TO MAKE SCIENTIFICALLY SOUND JUDGMENTS AND GO FORWARD TRUSTING OUR GOVERNMENT. >> SO THESE ARE GRAITD POINTS. THANK ARE GREAT POINTS. THANK YOU SO MUCH, JOHN. TO GO BACK TO THE FIRST ONE, I GREE IN DIFFERENCES IN STATES, I AGREE IT CAN BE CONFUSING TO THOSE WHO AREN'T FAMILIAR WITH THE ISSUES RELATED TO IDENTIFYING CHILDREN WITH AUTISM SO THERE ARE ALWAYS GOING TO BE THOSE CONCERNS AS TO WHY IS IT HIGHER IN STATE X VERSUS IN STATE Y. SO THAT CDC DOES MAKE AN EFFORT IN ITS AUTISM DATA RELEASE SURVEILLANCE REPORTS EVERY TWO YEARS TO CODIFY THE DIFFERENCES THAT ARE SEEN BETWEEN VARIOUS SITES, WHY NEW JERSEY IS SO MUCH HIGHER COMPARED TO OTHER SITES. IT'S A CHALLENGE TO KNOW FOR SURE WHAT THE REASONS ARE. THERE ARE CERTAIN FACTORS THAT WE BELIEVE ARE PLAYING A ROLE BUT WE DO TRY TO MAKE THAT CLEAR IN THE SURVEILLANCE REPORTS AS WELL AS IN THE INFORMATION THAT'S PROVIDED TO THE MEDIA AND PRESS RELEASES SO THAT WHEN THE MEDIA COMMUNICATES WITH THE PUBLIC, THE PUBLIC HAS AN APPRECIATION FOR WHY IT'S HIGHER IN ONE SITE COMPARED TO ANOTHER SITE, BUT THERE ARE CHALLENGES WITH COMMUNICATING THAT AND WE RECOGNIZE THAT AND WE'LL STRIVE TO MAKE THAT AS CLEAR AS POSSIBLE IN THIS TOOL AS WELL AS IN THE REPORTS. THEN THE DIFFERENCES BETWEEN THE VARIOUS DATA SOURCES AND THE PREVALENCE ESTIMATES OF AUTISM IS ALSO SOMETHING THAT WE'VE BEEN VERY ATTUNED TO BECAUSE THE QUESTION COMES TO CDC FREQUENTLY& THAT WHAT IS THE CORRECT PREVALENCE BECAUSE -- WHY IS THE NATIONAL SURVEY OF CHILDREN'S HEALTH THE COMING OUT WITH A DIFFERENT PREVALENCE THAN THE A ADDM REPORT. SO THE TOOL FOCUSES SPECIFICALLY ON THE DIFFERENCES IN HOW THE DATA ARE COLLECTED, AS WE MENTIONED, THE AGE RANGES OF THE CHILDREN WHO WERE INCLUDED, AND HOW THE DATA ARE COLLECTED, IS IT BY PARENT REPORT, IS IT ASSESSMENT OF SCHOOL AND HEALTH RECORDS, IS IT BILLING CODES AND SO ON, BUT THERE IS, PERHAPS, NO IDEAL WILL MA IN ORDER TO DEVELOP A TRUE PREVALENCE ESTIMATE, BUT THESE GIVE US INDICATIONS AS TO WHAT POSSIBLE OR LIKELY PREVALENCE IS AND THEN AS ALISON MENTIONED, WE HAVE THE OPPORTUNITY TO DRILL DOWN TO LOOK AT SOME OF THOSE OTHER FACTORS SUCH AS INTELLECTUAL DISABILITY AND AGE AT DIAGNOSIS AND SO ON. SO YOUR POINTS ARE GREAT AND WE'LL TAKE THEM INTO CONSIDERATION TO SEE IF WE CAN BE CLEARER IN THIS TOOL AND MOVING FORWARD IN CDC DATA RELEASES OF AUTISM PREVALENCE ESTIMATES. >> JOHN, STUART, I REALLY APPRECIATE THIS EXCHANGE AND I THINK IT'S REALLY WONDERFUL BECAUSE IT GETS DOWN TO THE HEART OF THE ISSUES THAT DATA ARE LIMITED IN TERMS OF WHAT THEY CAN EXPLAIN AND YET THE COMMUNITY NEED AND OFTEN DEMANDS APPROPRIATELY ANSWERS THAT THE DATA CAN'T ALWAYS GIVE. I REFERRED AGAIN -- YOU KNOW, WE WRESTLE WITH THIS ISSUE NOT ONLY IN AUTISM BUT FOR MANY OTHER DISORDERS THROUGHOUT MEDICINE. PREVALENCE ESTIMATES ARE REALLY BAD AT REVEALING MECHANISM, AND BY MECHANISM, I MEAN EVERYTHING FROM GENETICS TO BIOLOGY TO INFECTION TO SOCIAL CAUSES TO DIFFERENCES IN ASCERTAINMENT, ET CETERA. PREVALENCE ESTIMATES ARE GOOD AT TELLING YOU HOW MANY WE THINK, YOU KNOW, USING THIS ASSESSMENT METHOD MIGHT HAVE THE DISORDER. BUT THEY'RE REALLY, REALLY BAD AT ANSWERING THE QUESTIONS THAT ARE REALLY IMPORTANT QUESTION FROM A POLICY PERSPECTIVE THAT YOU RAISE, BUT THE PREVALENCE CAN'T REALLY ANSWER. SO ONE HAS TO THINK WHEN ONE IS DESIGNING STUDIES ARE NOT QUITE THE RIGHT WORD BUT EVALUATION AND ANALYSES OF THE DATA, WHAT IS THE QUESTION YOU WANT TO ANSWER. AND THEN LOOK AT WHETHER THE DATA EXIST TO ANSWER IT. ADDM DOES A REALLY GOOD JOB AT ANSWERING LOTS OF QUESTIONS ABOUT -- THAT REQUIRE A DEEPER LOOK, BUT NOT A VERY GOOD JOB AT BEING ABLE TO COMPARE RATES AND THINGS ACROSS CITIES. SO STUART, I APPLAUD YOUR EFFORTS BOTH ON THIS PAGE AND MOVING FORWARD TO TRY TO CLARIFY WHY THERE ARE A RANGE OF PREVALENCE ESTIMATES. WE FIGHT THE SAME BATTLE IN TRYING TO FIGURE OUT WHAT THE PREVALENCE IS OF OTHER DISORDERS, AND I THINK WE JUST HAVE TO REMEMBER THAT PREVALENCE STATISTICS ARE HELPFUL AND COMPLETELY UNHELPFUL AT THE SAME TIME, DEPENDING ON WHICH QUESTIONS YOU WANT TO ANSWER. SORRY, I TOOK MY CHAIR'S PRIVILEGE TOINT RUPT THE FLOW HERE. LARRY, SAM, ANYONE ELSE SO I CAN GET YOU ON THE LIST? OKAY. GO AHEAD, LARRY. >> THANKS, DR. GORDON. LET ME START OUT AS I WILL APPLAUD CDC FOR WHAT THEY'VE PUT TOGETHER HERE. NOW, THERE'S A BIAS HERE BECAUSE ONE OF THE DATASETS IS MINE. SO I PUT THAT ON THE TABLE. BUT YOU KNOW, I THINK IT'S IMPORTANT TO RECOGNIZE THAT YOU'RE NEVER GOING TO HAVE METHODOLOGICAL PURE IT ITY IN ANY OF THESE DATASETS. AND I THINK IT'S MORE IMPORTANT TO RECOGNIZE THAT THERE'S A DIFFERENCE BETWEEN SCIENTIFIC DATA AND THE USE FOR SEEN TISK PURPOSES AND THE USE FOR POLICY. NOW WHEN I CAME UP, AND I'VE BEEN DOING THIS A FEW YEARS, WHAT I WAS TAUGHT IS WHEN YOU'RE DEALING WITH POLICY MAKERS, THE MOST COMPLEX STATISTIC YOU SHOULD USE IS PERCENT, AND THAT 3 OUT OF 5 IS BETTER THAN 60%. AND I SAY THAT AND I'M BEING REALLY PRETTY SERIOUS ABOUT IT BECAUSE THE PEOPLE WHO MAKE NATIONAL POLICY AREN'T SCIENTISTS. AND SO ANYWAY, THE DATA ARE REPRESENTED IN A WAY THAT'S COMPREHENSIBLE IS TO BE APPLAUDED FROM MY PERSPECTIVE. THE OTHER THING IS THAT I THINK THE DIFFERENCES ARE THE STRENGTH OF THIS THIS TOOL. AND THE VARIANCE IS THE STRENGTH OF THE TOOL. BECAUSE WHAT IT DRIVES IS QUESTIONS. AND ANY TIME WE'RE DRIVEN TO ASK QUESTIONSS ES TESHLY IN ,, ESPECIALLY IN A POLICY CON TECH, CONTEXT, THAT'S A GREAT CONTRIBUTION. AND AGAIN, I THINK THIS IS REALLY TERRIFIC. BUT STUART SAID SOMETHING WHEN HE FIRST STARTED TALKING, IS THAT PUT THOSE FOUR DATASETS TOGETHER AND THIS TOOL ALLOWS YOU TO DO IT, AND THERE'S SIMPLY NO DENYING THAT NO MATTER HOW METHOD LOGICALLY IMPURE THOSE DATASET ARE, THE LINE IS GOING UP. AND IF I GO BACK TO THE IDEA, THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT, THE LAST RE-AUTHORIZATION WAS IN 2004, AND IN 2004, AUTISM WAS LISTED SPECIFICALLY AS A LOW INCIDENCE DISABILITY. AND IT STILL IS LISTED THAT WAY AND IN THOSE 14 YEARS, ON ALL OF THOSE DATASETS, THERE'S NO DOUBT THERE IS AN INCREDIBLE TREND UPWARDS. I CERTAINLY CAN'T ANSWER WHY, BUT THE QUESTION OF WHY IS IT THIS PERCENT IN NEW JERSEY VERSUS THIS PERCENT IN NORTH DAKOTA IS A WONDERFUL QUESTION THAT WE'RE FORCE TODAY ADDRESS, AND IF THIS DATA SYSTEM, THIS DATASET SUPPORTS ASKING THOSE QUESTIONS, THEN AGAIN, I THINK IT'S TERRIFIC AND AS ANOTHER AGENCY, I SAY BRAVO. >> THANK YOU, LARRY. SAM? AND THIS WILL BE THE LAST BEFORE THE BREAK. >> I'M ACTUALLY GOING TO RAISE AN ISSUE THAT I DON'T THINK IS GOING TO BE TOTALLY RESOLVED HERE BUT I JUST NEEDED TO BRING IT UP IN RESPONSE TO SOME OTHER COMMENTS. I THINK THAT KNOWING THE PREVALENCE IN ORDER TO DETERMINE HOW MUCH WE NEED TO DEVOTE TO SERVICES IS ABSOLUTELY ESSENTIAL, I THINK THAT IS GOING TO BE ONE OF THE PRIMARY THINGS THAT WE USE THIS DATA FOR. BUT I DON'T WANT TO GET INTO A TRAP WHERE WE ASSUME THAT PEOPLE WITH INTD LEK ACTUAL DISABILITY ARE GOING TO NEED CERTAIN TYPES OF SERVICES, PEOPLE WITHOUT INTELLECTUAL DISABILITY ARE GOING TO NEED OTHER TYPES OF SERVICES, BECAUSE THIS IS SOMETHING WE'RE ALREADY SEEING IN STATES. WE'VE GOT PEOPLE WHO ARE COMPLETELY UNABLE TO ACCESS HOME AND COMMUNITY-BASED SERVICES WAIVERS BECAUSE THEY HAVEN'T BEEN DIAGNOSED WITH AN INTELLECTUAL DISABILITY, AND I HAVE FRIENDS, CLOSE FRIENDS WHO, LIKE, CAN'T MAKE A SANDWICH INDEPENDENTLY, CAN'T REMEMBER TO EAT, CAN'T INDEPENDENTLY NAVIGATE OUTSIDE THEIR HOUSE BUT AREN'T GETTING ANY OF SERVICES WHATSOEVER EXCEPT FOR WHAT THEIR FRIENDS AND FAMILY CAN PROVIDE. BECAUSE THEY DON'T HAVE AN INTELLECTUAL DISABILITY. AND THE SAME THING IS TRUE OF SPECIAL EDUCATION SERVICES. I KNOW MANY PARENTS WHO ARE AT THEIR WITS END, THEIR KID IS HAVING BEHAVIORAL MELTDOWNS ON, YOU KNOW, A DAILY BASIS BECAUSE THEIR NEEDS AREN'T BEING MET IN THE CLASSROOM, BUT THEY'RE BEING DENIED SPECIAL EDUCATION SERVICE SERVICES BECAUSE, YOU KNOW, THEIR TEST SCORES ARE FINE. SO THEY'RE NOT IN CLASS BUT SINCE THEY'RE TURNING IN HOMEWORK AND THE HOMEWORK HAS CORRECT ANSWERS, THEY'RE NOT GETTING ANY KIND OF SPECIAL EDUCATION SERVICES. SO I JUST WANTED TO RAISE THAT AS AN ISSUE, AND I THINK WE DO HAVE TO FIND SOME WAY OF MEASURING THE LEVEL OF INTENSITY OF SERVICES THAT PEOPLE NEED, BUT I DON'T THINK THAT -- YOU KNOW, A LOT OF THE TIMES WHAT PEOPLE USE AS A PROXY FOR THAT ISN'T NECESSARILY THE ONE THAT WE SHOULD BE USING. >> SO THAT'S A GREAT POINT. THANK YOU SO MUCH FOR THAT, SAM. THAT'S VERY CRITICAL TO UNDERSTAND. BUT I DO WANT TO CORRECT SOMETHING THAT DR. GORDON SAID. HE SAID THIS WAS MY TOOL OR MY WORK, AND I JUST WANT TO POINT OW AGAIN ON OUT AGAIN ON THE LAST SLIDE, THESE WERE THE REAL MOVERS AND SHAKERS THAT HELPED PUT THIS TOGETHER. SO MY COLLEAGUE, PATTY DIETZ, WHO IS THE BRANCH CHIEF FOR THE DEVELOPMENTAL DISABILITIES BRANCH AT CDC WHERE ALL OF THE AUTISM WORK GOES ON, SHE'S HERE IN THE ROOM, AND SHE'S REALLY BEEN THE DRIVER BEHIND ACHIEVING THIS AND HAS DONE A GREAT JOB. SO I THANK HER AND I HOPE YOU'LL THANK HER TOO. >> THANK YOU, PATTY. AND THE REST OF THE CREW. THANK YOU VERY MUCH. [APPLAUSE] ALL RIGHT. WE'RE GOING TO NOW TAKE ABOUT A 14-MINUTE BREAK. WE'LL BE BACK HERE AT 10:40 FOR A PRESENTATION FROM THE FCC. WE'RE REALLY PLEASED TO HAVE A PRESENTATION FROM A FEDERAL OFFICE THAT IS NOT REPRESENTED ON THE IACC, BUT THEY HAVE COME TODAY TO TALK TO US ABOUT AN ISSUE THAT IS DIRECTLY RELEVANT FOR MANY OF THOSE INDIVIDUALS ON THE SPECTRUM WHO HAVE CHALLENGES IN COMMUNICATING. SO IT'S MY PLEASURE TO WELCOME THEODORE MARCUS, THE DEPUTY CHIEF OF THE DISABILITY RIGHTS OFFICE IN THE CONSUMER AND GOVERNMENTAL AFFAIRS BUREAU AT THE FEDERAL COMMUNICATIONS COMMISSION. HE'S GOING TO BE DISCUSSING RECENT FCC ACTIVITIES ON FACILITATING COMMUNICATION FOR INDIVIDUALS WITH DISABILITIES. THANK YOU, MR. MARCUS. >> THANK YOU. THANK YOU VERY MUCH, DOCTOR. BEFORE I BEGIN, I THOUGHT I'D TAKE ADVANTAGE OF OWNING THE FLOOR FOR THE MOMENT BECAUSE I DID HAVE SOME COMMENTS ON WHAT I HEARD IN THE RECENT -- IN THE MOST RECENT PRESENTATION BUT ALSO MINISTER LAKE. SO LET ME SHARE WITH YOU AN ANTIDOTE. I GOT A CALL SEVERAL WEEKS AGO FROM A FATHER IN OHIO WHO HAD TWO AUTISTIC CHILDREN, AND HE LIVED IN A TRAILER DEVELOPMENT, AND HE FOUND OUT WHEN HE MOVED THERE THAT THE LANDLORD HAD ENTERED INTO WHAT'S CALLED AN EXCLUSIVITY ARRANGEMENT FOR A MULTIPLE DWELLING UNIT EX-CLUES -- IT WAS ONE ISP, INTERNET SERVICE PROVIDER. IT TURNED OUT THAT THE SERVICE THAT WAS BEING OFFERED, THERE'S SOME -- I CAN'T GET INTO THAT, BUT THE SERVICE THAT WAS BEING OFFERED WAS INSUFFICIENTLY POWERED TO ENABLE THE RESOURCES THAT THE TWO AUTISTIC CHILDREN NEEDED AS A PART OF THEIR BROADBAND CONNECTION. HE WAS TERRIBLY FRUSTRATED WITH THIS, HE MADE EVERY EFFORT TO CONTACT THE FOLKS AT THE OHIO PUBLIC SERVICE COMMISSION, GREAT PEOPLE, AND THEY WERE STRUGGLING WITH IT, AND IT TURNS OUT THAT THERE IS A FEDERAL LAW FROM THIS ENTITY CALLED THE FEDERAL COMMUNICATIONS COMMISSION THAT SPEAKS DIRECTLY TO THE QUESTION OF EXCLUSIVITY ARRANGEMENTS FOR BROADBAND FOR MULTIPLE DWELLING UNIT PLACES. AND ALTHOUGH I CAN'T GO DEEPER INTO THE FACTS, I DID WANT TO SAY, WHEN YOU THINK ABOUT WHERE IS BROADBAND AVAILABLE AT WHAT SPEEDS, WHAT CAN IT POWER, WHO NEEDS TO USE IT, WHERE ARE THE UNSERVED AND UNDERSERVED POPULATION, WHERE ARE PEOPLE WHO ARE VULNERABLE? YOU MAY NOT KNOW THIS, BUT EVERY DROP OF THAT IS A PART OF THE FCC'S PURVIEW. EVERY DROP OF THAT IS SOMETHING THAT WE'RE STUDYING, THAT WE CARE ABOUT. WHEN MINISTER LAKE TALKED TO US ABOUT BASICALLY -- HE SAID THERE'S STRENGTHS AND WEAKNESSES AND IF ALL OF OUR STRENGTHS ARE THE SAME, ALL OF OUR WEAKNESSES ARE THE SAME, WE'RE NOT REALLY GOING TO BE ABLE TO ADDRESS A COMPLEX SET OF PROBLEMS. I THINK THAT'S ABSOLUTELY ACCURATE. WE'RE MULTIPLE NATIONS, RIGHT? YOU'RE A BODY OF RESEARCHERS AND SCIENTISTS AND POLICY MAKERS IN THAT SPACE, AND WE ARE IN THE COMMUNICATIONS SPACE, AND WE REGULATE THE AVAILABILITY AND ACCESSIBILITY OF COMMUNICATIONS PRODUCTS AND SERVICES. WE SHOULD BE ENGAGED. ESPECIALLY NOW, RIGHT? LEGACY TECHNOLOGY ENABLED POINT-TO-POINT COMMUNICATION. OKAY, THAT WAS YESTERDAY'S COMMUNICATIONS. TODAY'S COMMUNICATIONS ARE AS COMPLEX AND RICH AND CHALLENGING AND WONDERFUL AS WE'VE EVER BEEN ABLE TO IMAGINE, AND SO FOR EXAMPLE, DR. SHAPIRA, YOU HAVE DATA. THAT DATA MAY TEND TO SHOW WHERE FOLKS WITH AUTISM OR WHERE FOLKS WHO HAVE ASD ARE. IT MAY BE STATISTICALLY CHALLENGED, I UNDERSTAND THAT. BUT WE MIGHT BE ABLE TO USE THAT DATA TO UNDERSTAND WHERE WE& SHOULD BE DRIVING RESOURCES, HOW WE SHOULD UNDERSTAND WHERE UNIVERSAL SERVICE IS BEST DEPLOYED, WHERE IS THE AVAILABILITY OF PERSONS WITH ASD FOR BROADBAND, WHERE IS THAT? SO THE DATA MAY NOT BE PERFECT FOR EVERY PURPOSE, BUT IT MIGHT BE USEFUL FOR OTHER PURPOSES. SO TO BORROW FROM MINISTER LAKE, WE SHOULD BE TALKING. WE WANT TO BE ENGAGED WITH YOU, WE WANT YOU TO BE ENGAGED WITH US, BECAUSE IT MAY VERY WELL BE THAT WE HAVE SOMETHING TO BRING TO BEAR TO ASSIST. SO I WANT TO SAY GOOD MORNING. AND I WANT TO THANK YOU FOR THIS OPPORTUNITY TO ENGAGE WITH YOU AND TO PARTICIPATE IN THIS CRITICAL CONVERSATION, A VERY BIG MONTH, A VERY BIG TIME ON ASD. I WANT TO THANK THE PERSONS WHO ARE HERE WHO ARE ASSOCIATED WITH ACCESSIBILITY FOR THIS MEETING. I WANT TO THANK THE EVENT PLANNERS FOR ASSISTING US WITH LOGISTICS AND PRETTY MUCH EVERYTHING ELSE. I'VE GOT A COUPLE OF COLLEAGUES HERE WITH ME FROM THE DISABILITY RIGHTS OFFICE BUT ALSO FROM OUR LARGER BUREAU, THE CONSUMER AND GOVERNMENTAL AFFAIRS BUREAU, DAVID AND ROSALYN, BUT I ALSO WANT TO THANK FOLKS WHO HELPED GET THIS PRESENTATION WHO AREN'T HERE TODAY. THEY ALL ARE OUR SUBJECT MATTER EXPERTS, OUR BOOTS ON THE GROUND, IF YOU WILL, IN THIS SPACE. LOOK, THE CONVERSATION ABOUT EMPOWERING PERSONS WHO HAVE ASD AND ENABLING THEM IN THEIR LIVES, OR OTHER COGNITIVE DISABILITIES, QUITE FRANKLY, INVOLVE COMMUNICATION TECHNOLOGIES THAT COME WITHIN THE F C C'S PURVIEW AS I'VE DESCRIBED. WHAT WE DO IS WORK WITHIN OUR MANDATES AND WITHIN OUR SCOPE OF AUTHORITIES TO ENSURE THOSE TECHNOLOGIES ARE ACCESSIBLE AND USABLE FOR PERSONS WITH DISABILITIES. NOW WE ARE WELL-KNOWN, I THINK, OR I SUPPOSE, FOR THE WORK WE'VE DONE FOR A LONG TIME TO ENSURE ACCESS TO TELEPHONY AND VIDEO PROGRAMMING FOR PERSONS WHO ARE DEAF OR HARD OF HEARING OR BLIND, OR VISUALLY IMPAIRED. BUT OUR WORK APPLIES TO ALL PERSONS WITH DISABILITIES, AND THAT INCLUDES PERSONS WITH ASD OR OTHER COGNITIVE DISABILITIES. SO WE WANT TO MAKE SURE THAT WE ARE ENGAGED. MY PRESENCE HERE IS SOME PROOF OF THAT DESIRE. THE PRESENTATION THAT I'M GOING TO TRY TO DO IS GOING TO BASICALLY FALL INTO SORT OF TWO SPACES. ONE IS GOING TO BE SORT OF THE TALK THROUGH THE FOUNDATIONAL ELEMENTS, WHY ARE WE RELEVANT, WHAT MAKES US RELEVANT TO THIS CONVERSATION, SO THAT'S KIND OF FOUNDATIONAL, OR TO UPDATE THAT LANGUAGE, WHAT'S OUR PLATFORM. AND THE SECOND PART OF THIS CONVERSATION OR THIS PRESENTATION IS GOING TO BE OUR BUILDOUT, WHAT HAVE WE BEEN DOING, AND WHAT'S NEXT. WHAT ARE THE OPPORTUNITIES THAT ARE ON THE TABLE. WITH THAT IN MIND, LET'S MOVE ON TO THE SLIDES. AND GO THE WRONG DIRECTION, OF COURSE. OKAY, LET'S DO A LITTLE BIT OF DISCUSSION ABOUT BACKGROUND. OUR FOUNDATION INITIALLY IS THE COMMUNICATIONS ACT OF 1934 AS UPDATED OR AMENDED, IF YOU WILL, IN 1996. LET ME STEP BACK, COMMUNICATIONS OR TELECOMMUNICATIONS, WE HAVE SOME GENERAL DEFINITIONS THERE. IT BASICALLY REFERS TO THE MAKING AND RECEIVING OF CALLS OVER THE TELEPHONE NETWORK. THAT'S THE LEGACY UNDERSTANDING OF WHAT TELECOMMUNICATIONS IS FOR OUR PURPOSES, IT'S SUFFICIENT. OF IN 1990 1996, CONGRESS SAID TELECOMMUNICATIONS SERVICES AND EQUIPMENT MUST BE ACCESSIBLE AND USABLE FOR PERSONS WITH DISABILITIES. THE CAVEAT IN THE ACT FOR THAT IS THAT ACCESSIBILITY HAS TO BE READILY ACHIEVABLE. WHAT THAT ESSENTIALLY MEANS IS THAT IT'S EASILY ACCOMPLISHABLE, ABLE TO OH ABLE TO BE CARRIED OUT WITHOUT MUCH -- OR EXPENSE. IF ACCESSIBILITY IS NOT READILY ACHIEVABLE, THEN SERVICES, PRODUCTS AND EQUIPMENT MUST BE COMPATIBLE WITH ASSISTIVE TECHNOLOGY COMMONLY USED BY INDIVIDUALS WITH DISABILITIES TO ACHIEVE ACCESS. IF COMPATIBILITY WAS READILY ACHIEVABLE. SO FOR EXAMPLE, IF YOU ARE A PERSON THAT USES A HEARING AID, AND YOU PICK UP YOUR TELEPHONE, THERE SHOULD BE COMPATIBILITY THERE. RIGHT? THAT IS SOMETHING THAT YOU BRING TO THE TABLE ALREADY AND THE PHONE SHOULD BE COMPATIBLE WITH IT IF YOU'RE NOT ENHANCING THE SOUND OR OTHERWISE MAKING IT ACCESSIBLE TO THE USER. WITH RESPECT TO USABILITY, FOR A PRODUCT OR SERVICE TO BE USABLE, PEOPLE WITH DISABILITIES MUST HAVE ACCESS TO THE FULL FUNCTIONALITY AND DOCUMENTATION ASSOCIATED WITH THAT PRODUCT OR SERVICE, AND THAT INCLUDES INSTRUCTIONS, PRODUCT DOCK EUM IT TAITION, USER MANUALS, BILLS AND TECHNICAL SUPPORT, HELP DESKS, AS THAT IS PROVIDED TO PERSONS WITHOUT DISABILITIES. IN 2007, WE WANT TO SAY THAT WE EXTENDED THOSE REQUIREMENTS BEYOND LEGACY TELEPHONY TO VOIP, VOICE OVER INTERNET PROTOCOL, TELEPHONY CONNECTED TO THE PUBLIC SWITCHED TELEPHONE NETWORKS IN THAT PARTICULAR INSTANCE, BUT THERE'S ALSO VOIP THAT'S NOT CONNECTED TO THE PUBLIC SWITCH TELEPHONE NETWORKS, WHICH WE'LL ADDRESS IN A MOMENT. THE NEXT SORT OF PILLAR, THE NEXT BIG PIECE OF OUR FOUNDATION IS WHAT'S THE 21ST CENTURY COMMUNICATIONS AND VIDEO ACCESSIBILITY ACT, WHICH WE CALL THE CVAA. THIS WAS 2010, WHEN CONGRESS AMENDED THE COMMUNICATIONS ACT TO UPDATE IT, AND TO UPDATE ITS ACCESSIBILITY REQUIREMENTS FOR PERSONS WITH DISABILITIES CONSISTENT WITH ADVANCES IN THE COMMUNICATIONS MARKETPLACE. ASC OR ADVANCED COMMUNICATION SERVICES INCLUDES TEXT MESSAGING, INSTANT MESSAGES, INTEROPERABLE VIDEO CONFERENCING CONFERENCING, AND THE NEWER VOIP SERVICES THAT DIDN'T EXIST AT THE TIME AND WOULD HAVE BEEN COVERED PRIOR TO 2010 UNDER SECTION 255 OF THE COMMUNICATIONS ACT. THE RULE UNDER THE CVAA IS THAT ACS OR ADVANCED COMMUNICATION SERVICES AND ACS EQUIPMENT MUST BE ACCESSIBLE UNLESS NOT ACHIEVABLE. SO NOW YOU'RE HEARING THAT WORD ACHIEVABLE AGAIN. IN THE PRIOR, WE SAID READILY ACHIEVABLE, CONGRESS SAYS ACHIEVABLE SO IT HAS A SLIGHTLY DIFFERENT DEFINITION AND I'LL GIVE THAT, IT'S GOT TO BE ACHIEVABLE AND ACHIEVABLE MEANS ACCESSIBLE THROUGH AN ACCESSIBILITY SOLUTION THAT'S AVAILABLE AT A NOMINAL COST, AND THERE ARE SOME IMPLICATIONS. COMPUTERS, TABLETS, DEVICES, SMARTPHONES AND SOFTWARE USED FOR ADVANCED COMMUNICATION SERVICES MUST BE OPERABLE WITH LIMITED COGNITIVE SKILLS. ELECTRONIC MESSAGING SERVICE SUCH AS IT TEXT MESSAGING, INSTANT MESSAGING OR EMAIL, VOICE CHAT SERVICE SUCH AS USING YOUR COMPUTER TO TALK TO A FRIEND AND INTEROPERABLE VIDEO CONFERENCING SERVICES ARE A PART OF WHAT HAS TO BE ACCESSIBLE AND USABLE. ONE THING I WANT TO NOTE ON THAT IS THAT EQUIPMENT MANUFACTURERS AND SERVICE PROVIDERS HAVE TO BUILD ACCESSIBILITY INTO THEIR PRODUCTS OR SERVICES OR RELY ON THIRD PARTY ACCESSIBILITY SOLUTIONS THAT ARE ACHIEVABLE THAT ARE AVAILABLE TO CONSUMERS AT A NOMINAL COST, AND THAT'S A COST THAT'S SMALL ENOUGH THAT IT'S NOT A FACTOR IN THE CONSUMER'S CHOICE, AND ACCESSIBILITY SOLUTION THAT THE CONSUMER MAY GET FROM A THIRD PARTY, FROM ANOTHER COMPANY, MIGHT BE AN APPLICATION OF SOFTWARE THAT SIMPLIFIES THE ENABLE AN INDIVIDUAL WITH A DISABILITY TO SEND AND RECEIVE EMAIL AND TEXT MESSAGES. SO THESE REQUIREMENTS, HOWEVER, DON'T APPLY TO ADVANCED COMMUNICATION SERVICES OR EQUIPMENT THAT'S CUSTOMIZED FOR THE UNIQUE NEEDS OF A PARTICULAR BUSINESS, AND A ARE NOT OFFERED DIRECTLY TO THE PUBLIC BY THE SERVICE PROVIDER. IN SUCH CASES, THE BUSINESS MAY HAVE ACCESSIBILITY OBLIGATIONS UNDER OTHER DISABILITY LAW SUCH AS THE AMERICANS WITH DISABILITIES ACT. JUST LIKE TELECOMMUNICATIONS, FOR ADVANCED COMMUNICATIONS PRODUCTS OR SERVICES TO BE USABLE, PEOPLE WITH DISABILITIES FUNCTIONALITY AND DOCUMENTATION FOR THE PRODUCT. NOW FOR BOTH TELECOMMUNICATIONS AND ADVANCED COMMUNICATIONS SERVICES, THE THESIS AT THE FCC IS FUNCTIONAL -- IS FUNCTIONALITY. WE FOCUS ON FUNCTIONAL ABILITIES, AND WE DEFINE THE TERM ACCESSIBLE IN THAT CONTEXT TO MEAN THAT INPUT, CONTROL AND MECHANICAL FUNCTIONS MUST BE LOCATABLE, IDENTIFIABLE AND OH OPERABLE, SO FOR EXAMPLE, SHOULD BE ALL OF THOSE THINGS WITHOUT VISION, IT SHOULD BE ALL OF THOSE THINGS WITH LOW VISION AND LIMITED OR NO HEARING, WITH LITTLE OR NO COLOR PERCEPTION, WITHOUT HEARING. WITH LIMIT THE MANUAL DEXTERITY. WITH LIMITED REACH AND STRENGTH. IF YOU HAVE A PROSTHETIC DEVICE. WITHOUT TIME-DEPENDENT CONTROLS, YOU MAY NEED TIME TO BE ABLE TO USE THE SERVICE. YOU SHOULDN'T BE RAPIDLY GOING PAST YOU PF YOU HAVE THE TIME BEFORE YOU HAVE THE TIME TO ENGAGE. WITHOUT SPEECH, WITH LIMITED COGNITIVE SKILLS BY PROVIDING A MODE THAT MINIMIZES THE COGNITIVE, MEMORY, LANGUAGE AND LEARNING SKILLS REQUIRED OF THE USER. BEFORE I MOVE ON FROM SORT OF THE PLATFORM OF WHY THE FCC IS IN THIS SPACE WITH YOU, I WANT TO TELL YOU ABOUT OUR BIENNIAL REPORT. EVERY TWO YEARS SINCE 2010, THE F C C SUBMITS A REPORT TO CONGRESS ABOUT THE ACCESSIBILITY AND USABILITY OF TELECOMMUNICATIONS AND ADVANCED COMMUNICATIONS SERVICES AND EQUIPMENT. WHAT THIS REPORT DOES IS IT ASSESSES INDUSTRY COMPLIANCE WITH OUR REQUIREMENTS, IT ADDRESSES ACCESSIBILITY BARRIERS TO NEW COMMUNICATIONS TECHNOLOGIES, IT ADRISES DRESSES THE EFFECT OF ACCESS BILITY RECORD-KEEPING, DEVELOPMENT AND DEPLOYMENT OF NEW COMMUNICATIONS TECHNOLOGIES, AND FINALLY, IT PROVIDES INFORMATION ABOUT THE NUMBER AND NATURE OF AND THE ACTIONS TAKEN TO RESOLVE COMPLAINTS ALLEGING VIOLATIONS OF THESE REQUIREMENTS. NOW TO ASSIST THE FCC IN THE PREPARATION OF OUR BIENNIAL REPORT, WE ASK FOR PUBLIC COMMENT ON THESE ISSUES. INDUSTRY USUALLY PROVIDES INPUT ON THE WAYS IN WHICH THEY ARE DESIGNING AND DEVELOPING THEIR PRODUCTS AND SERVICES TO MEET THE NEEDS OF PEOPLE WITH DISABILITIES. THEY ATTRIBUTE SOME OF THE INCREASES IN ACCESSIBILITY TO THE AVAILABILITY OF ACCESSIBILITY FEATURES THAT ARE BUILT IN TO OPERATING SYSTEMS AND PLATD FORMS PLATFORMS SUCH AS IOS, ANDROID AND BIN WIN DOUGHS, WHICH COMMUNICATIONS AT DEVELOPERS CAN TIE INTO AND USE. OVER THE YEARS, CONSUMERS HAVE NOTED INCREASED ACCESSIBILITY IN COMMUNICATIONS TECHNOLOGIES. BUT ALSO IDENTIFY AREAS THAT STILL HAVE ROOM FOR IMPROVEMENT. WE DO ISSUE THIS REPORT EVERY TWO YEARS AND WE DO ISSUE IT ON THE BASIS OF MATERIAL THAT IS PRESENTED TO US. THIS GROUP CAN PRESENT INFORMATION TO US TOO, OR IT KNOWS PEOPLE WHO CAN. LET'S MAKE SURE THAT WE'RE GETTING IN OUR OH BIENNIAL REPORT THE GRIST FOR THAT PARTICULAR MILL AND WE INVITE YOU TO REACH OUT AS NEEDED AND AS YOU ARE ABLE TO GET FOLKS TO CONTRIBUTE TO THAT PROCESS. YOU CAN GO ONLINE TO REQUEST ASSISTANCE TO THE FCC'S CONSUMER COMPLAINT CENTER BY SELECTING ACCESS FOR PEOPLE WITH DISABILITIES AND THE DISCUSSION OF THE BIENNIAL REPORT WILL BE FOUND AT THAT SITE. I'M GOING TO MOVE PAST THE PLATFORM. WE HAVE THE CVAA, WE HAVE THE COMMUNICATIONS ACT OF 1934, WE HAVE A BIENNIAL REVIEW REQUIREMENT THAT WE DO WHICH ALLOWS US TO TAKE INPUT ON ACCESSIBILITY AND HOW TECHNOLOGIES ARE ACTUALLY DOING FOR PERSONS WITH DISABILITIES. NOW I'M GOING TO TALK A LITTLE BIT ABOUT -- I DON'T WANT TO SPEND TOO MUCH TIME BUT TALK A LITTLE ABOUT HOW WE'VE APPLIED THESE MANDATES HISTORICALLY AND WHERE WE'RE GOING NEXT. ONE OF THE FIRST AREAS OF OUR BUILDOUT IS VERY WELL-KNOWN IS WITH RESPECT TO RELAY SERVICES. THIS IS FOR PEOPLE WHO ARE DEAF OR HARD OF HEARING, THEY MAY BE DEAF BLIND OR HAVE A SPEECH DISABILITY. RELAY SERVICES ARE PHONE SERVICES THAT ALLOW PERSONS TO PLACE AND RECEIVE PHONE CALLS. TRS PROVIDERS ARE EXEB SAY THED FOR THE COST FROM EITHER STATE OR FEDERAL FUND AND THERE'S NO COST TO THE T RS USER. THERE ARE SEVERAL FORMS OF T RSMRS, ON THE PARTICULAR NEEDS OF THE USER AND EQUIPMENT AVAILABLE. WHAT'S KEY TO REMEMBER ABOUT IT. RFLT S ABOUT IT. RS SERVICES THEY HELP PEOPLE WHO HAVE -- SPEECH TO SPEECH RELAY SERVICES AND CAPTIONED TELEPHONE SERVICE. EXCUSE ME. I APOLOGIZE. THAT SHOULD HAVE BEEN THERE. SO LET ME GIVE YOU A COUPLE OF SECONDS TO TAKE A LOOK AT THAT AND FORGIVE ME FOR MY ERROR. NOW WE'LL MOVE ON TO CLOSED CAPTIONING REQUIREMENTS. CLOSE CLOSED CAPTIONING DISPLAYS THE AUDIO PORTION OF A TELEVISION PROGRAM AS TEXT ON THE TSM V SCREEN TV SCREEN, WE'VE ALL USED IT, FRANKLY EVEN THOUGH I'M A HEARING PERSON, I NO LONGER WATCH ANY PROGRAMMING IF AT ALL POSSIBLE WITHOUT THE CAPTIONS. I HAVE NO IDEA WHAT THE ACTORS ARE SAYING, AND I'M CONSTANTLY ASKING MY WIFE, WHAT DID HE SAY, WHAT DID SHE SAY, WHAT DID THEY SAY AND SHE'S CON STANTDLY SAYING, I DON'T KNOW. SO WE GET INTO INTERESTING ARGUMENTS THERE, BUT WE DECIDED THAT WE WOULD START USING CAPTIONING AND IT HAS ENABLED THE ENTIRE EXPERIENCE. SO CAPTIONING REQUIREMENTS ARE THERE. IT PROVIDES A CRITICAL LINK TO NEWS, ENTERTAINMENT AND INFORMATION FOR INDIVIDUALS WHO ARE DEAF OR HARD OF HEARING. CONGRESS DOES REQUIRE VIDEO PROGRAMMING DISTRIBUTORS WHICH WE CALL VPDs, CABLE OPERATORS, BROADCASTERS, SAT LIE DISTRIBUTORS, TO CLOSE CAPTION THEIR TV PROGRAMS. IN GENERAL, MOST CAPTIONED PROGRAMS SHOWN ON TV MUST BE CAPTIONED WHEN RE-SHOWN ON THE INTERNET. ANOTHER AREA WHERE WE ARE BUILDING OUT THE SPACE IS WITH RESPECT TO AUDIO DESCRIPTION REQUIREMENTS. ONE OF THE -- WHAT AUDIO DESCRIPTION DOES IS IT ASSISTS THOSE WITH VISUAL PROCESSING DISABILITIES, AMONG OTHERS, BY INSERTING IN NATURAL CAPTION VIDEO PROGRAMMING WHAT'S GOING ON. IT'S A DISCUSSION WHAT IF'S GOING ON. IT MAY DESCRIBE A FACIAL EXPRESSION, IT MAY DESCRIBE CONTEXT, IT WILL PROVIDE -- IT WILL ALLOW THE PERSON WHO IS USING TO REALLY UNDERSTAND WHAT'S HAPPENING WHEN THEY'RE OTHERWISE LOCKED OUT OF THAT UNDERSTANDING. ONE OF THE CV ASM A PROVISIONS THAT'S HAVING A BIG IMPACT ON PEOPLE'S LIVES FRANKLY IS AUDIO DESCRIPTION. THESE SHORT VERBAL DESCRIPTIONS OF ACTION OR KEY VISUAL XENOS IN A PROGRAM SUCH AS THE SETTING, COSTUMES, FACIAL EXPRESSIONS, ARE PROVIDED TO ADD CONTEXT. THE DESCRIPTIONS ARE INSERTED INTO PAUSES WITHIN A PROGRAM'S DIALOGUE. NOW OUR RULES REQUIRE LOCAL TV STATION AFFILIATES OF ABC, CBS, FOX AND NBC, WHICH ARE LOCATED IN THE TOP 60 TV MARKETS ACCORDING TO NIELSEN'S, THAT THEY PROVIDE ABOUT FOUR HOURS A WEEK OF AUDIO-DESCRIBED -- YOU'LL SOMETIMES HEAR IT AS VIDEO DESCRIBED, THAT'S THE SAME THING, AUDIO DESCRIBED PROGRAMMING, PRIME TIME AND/OR OH CHILDREN'S PROGRAMMING. ABOUT THREE HOURS PER WEEK ALSO OF FURTHER VIDEO DESCRIPTIONS DURING THE HOURS OF 6:00 A.M. TO MIDNIGHT. ALSO THE TOP 5 NON-BROADCAST NETWORKS, SO THESE RIGHT NOW WOULD BE HDTV, HISTORY, TBS, DISCOVERY AND USA, MUST PROVIDE THE SAME AMOUNT OF COVERAGE. IT'S OUR UNDERSTANDING THAT VIDEO DESCRIPTION OR OH AUDIO DESCRIPTION, IF YOU WILL, CAN BE A USEFUL TOOL FOR PERSONS WITH AUTISM. FOR EXAMPLE, VIDEO DESCRIPTION OFTEN IDENTIFIES THE EMOTIONS CHARACTERS ARE DISPLAYING, NAMES THE PERSON WHO'S SPEAKING AND CAN HELP EXPLAIN THE CONTEXT FOR ACTIONS ON THE SCREEN. BUT ON THE OTHER HAND, VIDEO DESCRIPTION MAY ADD TO AUDIO OVERLOAD. INSERTING MORE AUDIO INTO THE PAUSES BETWEEN DIALOGUE MAY CONTRIBUTE TO THAT. TO OUR KNOWLEDGE, WE HAVEN'T RECEIVED COMPLAINTS OR COMMENTS FROM THE AUTISM COMMUNITY REGARDING VIDEO DESCRIPTION. WE'D BE INTERESTED IN KNOWING, DOES IT WORK, DOES IT HELP, DOES IT NOT? CAN IT BE IMPROVED? WHAT CAN WE DO TO ASSIST? ANOTHER BIG AREA THAT WE'VE BUILT OUT IN UNDER OUR MANDATES IS WITH RESPECT TO EMERGENCY INFORMATION ON TELL, RIGHT? TELEVISION, RIGHT? INFORMATION ABOUT CRISES. EVERYONE HAS TO HAVE ACCESS TO THAT. SOME PERSONS WHO ARE VULNERABLE, IT SHOULD BE ARGUED, NEED BETTER ACCESS, FASTER ACCESS BECAUSE THEY MAY NEED TO ARRANGE FOR CARE THAT'S ABOVE AND BEYOND WHAT OTHERS MIGHT HAVE TO HAVE. SO IT'S A CRITICAL AREA FOR US. OUR RULES REQUIRE THAT EMERGENCY INFORMATION OR TELEVISED EMERGENCY INFORMATION HAS TO BE VISUAL. WHAT THAT MEANS IS EMERGENCY AUDIO INFORMATION MUST BE PROVIDED IN CLOSE CLOSED CAPTIONING OR THROUGH OTHER VISUAL MEANS OF PRESENTATION, AND THAT CAN GET FAIRLY RAW. WHEN TECH GOES DOWN AND PEOPLE ARE IN CRISIS, IT COULD BE GULF COAST DISASTERS, THERE COULD BE ALL KINDS OF THINGS, SOMETIMES IT'S THE LITERALLY WRITING OUT ON A POSTER BOARD EXACTLY WHAT THE EMERGENCY INFORMATION IS. WHERE CAN YOU GET WATER, WHERE IS SHELTER, WHAT ARE THE EVACUATION ROUTES? WE STAY ENGAGED. WHEN TECH GOES DOWN, WE'RE STILL THERE MAKING SURE THAT VISUAL PRESENTATION OF EMERGENCY INFORMATION FOR PERSONS WITH DISABILITIES IS THERE AND WE TRY TO STAY VERY, VERY DEEP INTO THOSE WEEDS. EMERGENCY SCROLLS AND CLOSED CAPTIONING CAN'T BLOCK EACH OTHER. IT ALSO MUST BE AUDIBLE. EMERGENCY TEXT CRAWLS MUST BE MADE AVAILABLE -- I'M SORRY -- MADE AUDIBLE ON OH THE SECONDARY AUDIO STREAM, AND AUDIBLE TONE MUST ACCOMPANY EMERGENCY SCROLLS. PEOPLE HAVE TO KNOW THERE'S SOMETHING IN AN EMERGENCY SPACE THAT'S ABOUT TO COMMENT, THEY CAN GO TO THEIR SECONDAR AUDIO CHANNEL TO GET THAT INFORMATION. SO WE REQUIRE BROADCASTERS AND CABLE OP OPERATORS TO MAKE LOCAL EMERGENCY INFORMATION AVAILABLE TO PERSONS WHO ARE DEAF, HARD OF HEARING, PERSONS WHO HAVE BLIND OR HAVE VISUAL DISABILITIES, SPECIFICS WE HAVE ADDRESSED IN OUR RULES. WHAT THIS RULE MEANS IS THAT EMERGENCY INFORMATION HAS TO BE PROVIDED IN BOTH AUDIO AND VISUAL FORMATS. WE WOULD LIKE TO KNOW IF THE AUTISM COMMUNITY HAS UNMET NEEDS REGARDING EMERGENCY INFORMATION ON T VSM. TV. WHAT HAVE WE BEEN UP TO ON COGNITIVE DISABILITIES WITH RESPECT TO WHICH ASD IS, FOR WON'T OF A WANT OF A BETTER TERM, A SUBSET? WELL, IN 2015, WE HAVE A SUMMIT ON TELECOMMUNICATIONS NEEDS OF PEOPLE WITH COGNITIVE DISABILITIES, WE HELD THAT IN OCTOBER OF 2015. THE FCC ALSO HAS A DISABILITY ADVISORY COMMITTEE. NOW THIS IS A FACA, MANY OF US KNOW WHAT THIS IS, BUT IT'S A FEDERAL ADVISORY COMMITTEE ACT ADVISORY COMMITTEE. WE ARE NOW ON OUR THIRD EDITION, SO IT HAS A TWO-YEAR MANDATE. SO DAC1 WHO HAVE BEEN AROUND -- I GUESS THAT WOULD BE -- SO THIS IS 2019, SO THAT WOULD BE 2014, BUT IN ANY EVENT, WE HAD A DISABILITY ADVISORY COMMITTEE COGNITIVE DISABILITIES WORKING GROUP THAT PRODUCED BEST PRACTICES RECOMMENDATIONS AROUND ACCESSIBILITY AND USABILITY FOR PERSONS WITH COGNITIVE DISABILITIES, INCLUDING ASD. INDEED THAT GROUP PRODUCED OR IT LED TO THE PRODUCTION OF A WHITE PAPER, WHICH WE HAVE COPIES OF, I THINK, WE HAVE COPIES HERE THAT ARE BEING MADE AVAILABLE SO YOU CAN GET THEM AND WE CERTAINLY CAN MAKE MORE, AND WE ALSO HAVE ONLINE ACCESS TO THAT WHITE PAPER, BUT THIS WAS A WHITE PAPER ON INDIVIDUALS WITH COGNITIVE DISABILITIES, BARRIERS TO AND SOLUTIONS FOR ACCESSIBLE INFORMATION AND COMMUNICATIONS TECHNOLOGIES. AND WE ALSO HAVE WITHIN MY SHOP, RIGHT, AND ALTHOUGH I'M NEW YOU TO THE SHOP, IT'S SORT OF IMMERSION. WE HAVE DISPUTE ASSISTANCE AND CONSUMER COMPLAINTS AND OUTREACH EFFORTS. SO IF A PERSON IS EXPERIENCING INACCESSIBILITY OR UNUSABILITY OF COMMUNICATIONS PRODUCTS OR SERVICES THAT WE'VE MANDATED THE EXACT OPPOSITE. THEY COME TO US, DEPENDING ON THE STA TEUTD, TO GET THEIR DISPUTES RESOLVED SO THEY HAVE ACCESS OR IF IT IS A CERTAIN TIME OF DISPUTE OR PROBLEM, IT'S A COMPLAINT. AND WE WILL ASSURE THE RULES AND VINDICATE THEM BY MANAGING THOSE COMPLAINTS. I ALSO WANTED TO NOTE THAT BACK IN 2015, THE FCC HELD A SUMMIT AND EXPO ON THE TELECOMMUNICATIONS NEEDS OF PEOPLE WTH COGNITIVE DISABILITIES, WHICH WAS FOLLOWED UP WITH GUIDANCE ON ACCESS -- AND OF COURSE OH THE WHITE PAPER I'VE JUST DESCRIBED. I WANT TO LEAVE ON THE SCREEN HOW TO GET IN TOUCH WITH US, HOW TO TALK TO US, AND I WANT TO TURN TO THE DAC AND SOME FINAL COMMENTS ON WHAT WE CAN DO TOGETHER. WITH RESPECT TO THE DISABILITY VEEZ ADVISORY COMMITTEE, WE DO HAVE REPRESENTATION OF THE COMMUNITY OF PERSONS WITH COGNITIVE DISABILITIES. THERE'S WAYS TO GET ON THE DAC, VERY STRAIGHTFORWARD. YOU APPLY, AND IT'S ALL VETTED AND ULTIMATELY WHAT THE DAC NEEDS, IT'S GOING TO GET. IF WE DON'T HAVE THE RIGHT VOICES OR IF THERE'S A WAY TO ENHANCE THE VOICES AROUND ASD AND COGNITIVE DISABILITIES ON OUR DISABILITY ADVISORY COMMITTEE, WHICH OF COURSE MAKES RECOMMENDATIONS TO THE COMMISSION WHICH THEN CAN BE IMPLEMENTED AS RULES, THEN OFFER TO JOIN US. OR FIND OUT WHO SHOULD BE ON SO THAT WE'RE SURE TO HAVE THE KINDS OF WORKING GROUPS, RECOMMENDATIONS AND EXPERTISE AND SUBJECT MATTER EXPERTISE THAT WE HAVE TO HAVE IN ORDER TO DEVELOP USEFUL RECOMMENDATIONS AROUND ASD ACCESSIBILITY AND USABILITY. AND THEN FINALLY, I JUST WANT TO SAY, I THINK THERE ARE BASICALLY THREE PLACES WHERE THIS COMMUNITY, AND PERSONS WITH WHOM IT IS IN ONE OR TWO DEGREES OF SEPARATION, CAN REALLY HELP US. DIVIDE NEIGHBORHOOD SORT OF THREE SPACES, FIRST IS UPSTREAM, SECOND IS MIDSTREAM, THIRD IS DOWNSTREAM. UPSTREAM IS POLICY. IF WE GET THE PREVALENCE DATA ON PERSONS WITH ASD AND WE GET TO SEE THAT ON A STATE BY STATE LEVEL, YEAH, THERE MAY BE SOME PROBLEM WITH THE DATA AND THOSE CAVEATS MIGHT NEED TO BE EXPRESSED BUT AT THE SAME TIME IT CAN HELP US WITH BROADBAND MAPPING, IT CAN HELP US UNDERSTAND WHERE RESOURCES OUGHT TO BE DEVOTED, IT CAN HELP US HAVE A LENS ON WHAT NOT SERVING THIS PARTICULAR COMMUNITY WOULD MEAN IN THIS STATE OR THAT STATE OR THE OTHER STATE. SO IT'S NOT UNUSEFUL. I SAY THAT TO SAY, WE'RE MAKING POLICY CONTRIBUTE TO THAT. LET US KNOW WHAT WE SHOULD BE THINKING ABOUT. WE HAVE OPEN DOCKETS IN ALL THE SPACES I'VE JUST DESCRIBED. SOMETIMES WE DON'T HAVE AN OPEN DOCKET BUT MAYBE WE SHOULD. WE RECEIVE COMMENTS, COMMENTS ON A BIENNIAL REPORT WE JUST TALKED ABOUT, THERE ARE OTHER PLACES WHERE COMMENTS CAN BE MADE. WE HAVE MEETINGS, SOME OF THEM EX-PARTE AND SOME NOT WITH RESPECT TO ONGOING PROCEEDINGS WEAND SHOULD BE PROCEEDINGS AND WE SHOULD BE HAVING THEM. SO THOSE ARE ON THE POLICY DEVELOPMENT PIECES OF WHAT I CALL UPSTREAM. MIDSTREAM IS PRODUCT AND SERVICE SIDE ENGAGEMENT WITH MANUFACTURERS AND PROVIDERS. THEY HAD TO TAKE INTO ACCOUNT INDIVIDUALS WITH DISABILITIES, ACCESSIBILITY AND USABILITY NEEDS. THEY HAVE TO TRY TO BAKE IT IN. AND OF COURSE AT THE END, THEY STILL NEED TO HAVE INPUT. ADVISE THEM, OFFER TO ADVISE THEM, AND IF THEY SAY NO, LET US KNOW. FINALLY, DOWNSTREAM. FOLKS HAVE COMPLAINTS, FOLKS ARE STRUGGLING. THEY HAVE REASON TO DISPUTE THE ACCESSIBILITY OR USABILITY AFTER PRODUCT OR SERVICE THAT THEY'RE GETTING. THEY CAN CALL US. THEY CAN MAKE ONLINE EFFORTS WITH US. THEY CAN EVEN WRITE US. WE'LL TAKE ALL INPUTS. AND WE WILL ASSIST THEM IN GETTING THE ACCESSIBILITY AND USABILITY THAT THEY'RE ENTITLED TO. IF YOU ARE DEALING WITH PERSONS ON THE ADVOCACY SIDE, LET THEM KNOW WHERE WE ARE, LET THEM KNOW THAT WE'RE HERE, SHARE WITH THEM HOW TO GET IN TOUCH WITH US. AND LET US SEE HOW WE CAN ASSIST. AGAIN, I WANT TO THANK YOU FOR ALLOWING US TO PARTICIPATE THE IN THIS CONVERSATION. IT'S A VERY IMPORTANT ONE TO US. I DON'T KNOW IF I HAVE ANY TIME LEFT, BUT I'M HAPPY TO HEAR FROM YOU, YOU KNOW, WHAT'S HAPPENING, WHAT SHOULD WE KNOW ABOUT. I WILL TAKE NOTES ON THIS ANDLY TAKE THEM BACK AND WE WILL GET TO WORK. THANK YOU. [APPLAUSE] I'M SORRY, I HAD TO PUT MY GLASSES ON. >> THANK YOU. THERE ARE QUESTIONS. JOHN. >> YES. THANK YOU FOR COMING TO PRESENT TO US TODAY. ONE QUESTION THAT I DIDN'T SEE ADDRESSED IN YOUR PRESENTATION IS PEOPLE WITH COGNITIVE DISABILITIES OFTEN HAVE, BY DEFINITION, COMMUNICATION DISABILITY, AND ONE THING THAT'S EMERGED IN THE LAST 20 YEARS IS THE INTERNET HAS PROVIDED A MECHANISM OF COMMUNICATION FOR A GREAT MANY SUCH PEOPLE WHO DIDN'T HAVE ANYTHING BEFORE. BUT GIVEN THAT MANY PEOPLE WITH SIGNIFICANT COGNITIVE DISABILITIES ALSO HAVE LIMITED FINANCIAL MEANS, HAS THE FCC DONE ANYTHING TO ENSURE THAT BROADBAND PROVIDERS, FOR EXAMPLE, ARE REQUIRED TO PROVIDE THOSE SERVICES TO PEOPLE WITH DISABILITIES AT A COST THEY CAN AFFORD, RECOGNIZING THAT WHAT THEY CAN AFFORD IS OFTEN RATHER DIFFERENT THAN WHAT THE GENERAL PUBLIC MAY AFFORD IN THEIR MARKET AREA? >> THE SHORT ANSWER TO THE CONCEPT OF THE QUESTION IS YES. BUT LET ME GET GRANULAR WITH IT. THE FCC HAS A COUPLE OF KEY MANDATES THAT AFFECT THE ANSWER TO THAT QUESTION. ONE IS UNIVERSAL SERVIC. WE HAVE TO MAKE SURE THAT THE COMMUNICATION SERVICES THAT PEOPLE NEED ARE AVAILABLE TO EVERYBODY. INCLUDING PERSON WITH DISABILITIES. INCLUDING PERSONS WHO ARE PART OF UNDERSERVED OR UNDERPRIVILEGED POPULATIONS, IF YOU WILL. AND SO WE HAVE FOUR PROGRAMS UNDER THAT SORT OF MANDATE THAT ADDRESS THIS TO SOME DEGREE.& ONE IS CALLED THE E RATE PROGRAM THIS, IS A SCHOOLS AND LIBRARIES PROGRAM DESIGNED TO ENSURE INTERNET ACCESS AND CONNECTIVITY FOR K THROUGH 12 AT VARIOUS LEVELS OF NEED, OKAY? IT'S AS HIGH AS WE NEED 90 CENTS ON THE DOLLAR TO PAY FOR THIS, AS LOW AS 20 CENTS ON THE DOLLAR TO BE ABLE TO PAY FOR INTERNET CONNECTIONS. ANOTHER PROGRAM IS THE LIFE LINE PROGRAM. LIFE LINE INITIALLY WAS ESTABLISHED TO ENSURE TELEPHONE CONNECTIONS AT AFFORDABLE RATES FOR PERSONS WHO NEEDED IT, OR WHO ARE AT OR NEAR THE POVERTY LEVEL AND COULD ESTABLISH ELIGIBILITY. THIS HAS ALSO BEEN EX-PABDED TO INCLUDE BROADBAND. THOSE ARE WORKS IN PROGRESS. AND NOT EVERYBODY AGREES ON HOW MUCH MONEY SHOULD BE MADE AVAILABLE. BUT IT IS A CONSTANT DEBATE AND WE DO PROVIDE -- WE DO ENSURE THAT THE UNIVERSAL SERVICE FUND IS PURPOSED TOWARD BROADBAND ACCESSIBILITY AND AVAILABILITY FOR ALL AMERICANS, ESPECIALLY PERSONS WHO ARE IN CERTAIN POPULATIONS AS DEFINED IN THE STATUTE WHICH WOULD OH INCLUDE PERSONS WITH DISABILITIES. >> WELL, THANK YOU. >> SURE. >> DAVID? >> I WAS WONDERING IN ADDITION TO PUTTING OUT -- TO ENFORCING THE LAWS IN THIS AREA, ARE THERE ANY BEST PRACTICE GUIDELINES THAT THE FCC COMES OUT WITH THAT CAN SUPPORT PEOPLE ATTEMPTING TO MAKE TECHNOLOGY MORE ACCESSIBLE? >> WELL, FOR EXAMPLE, I THINK THE WHITE PAPER WAS A FOLLOW-ON ON BEST PRACTICES RECOMMENDATIONS BY THE DISABILITY ADVISORY COMMIT'S WORKING GROUP. SO THERE ARE SOME THERE. WE ARE CONSTANTLY IN THE BEST PRACTICES DEVELOPMENT SPACE, BUT AGAIN, AND THAT'S NOT REALLY ENFORCEMENT STUFF, RIGHT, BEST PRACTICES BY DEFINITION, THESE ARE THE THINGS THAT WE HAVE SEEN COLLECTIVELY ARE WORKING FOR PERSONS WITH SPECIFIC DISABILITIES, LET'S ALL SORT OF AGREE THAT WE SHOULD BE DOING THAT, BUT WHAT SHOULD THOSE BEST PRACTICES BE REQUIRES INPUT FROM COMMUNITIES THAT ACTUALLY KNOW. SO AGAIN IN A SENSE, IT'S ENGAGING AT THE MANUFACTURING LEVEL AND BAKING IN ACCESSIBILITY AND USABILITY WITH SERVICE PROVIDERS AND PRODUCT MANUFACTURERS AND EQUIPMENT MANUFACTURERS, RIGHT, AND THE FCC IS SAYING, YOU'RE ENTITLED TO DO THAT, AND THEY HAVE TO TAKE IT INTO ACCOUNT, AND THEN SORT OF BRINGING TOGETHER GROUPS TO ENSURE THAT BEST PRACTICES ARE AID FIED, AND WE IDENTIFIED, AND WE P ROVIDE THE FORUMS FOR THAT, FOR EXAMPLE, THE DISABILITY ADVISORY COMMITTEE THAT I JUST MENTIONED. THERE ARE NEW IDEAS AND CONCEPTS BUT WE WILL STAY ENGAGED, AND WE HAVE NOT SINCE -- I THINK PRIOR TO 2015, WE HADN'T EVEN BEEN IN THAT CONVERSATION AS IT RELATES TO COGNITIVE DISABILITIES AND ASD. WE'RE IN IT NOW AND WE SHOULD BE DEVELOPING THOSE BEST PRACTICES AND THEY'RE GOING TO NEED SOME HELP. >> LARRY. >> THANK YOU FOR YOUR PRESENTATION. JUST TO MENTION THAT THE OFFICE OF SPECIAL EDUCATION PROGRAMS INVESTS MILLION OHS OF DOLLARS EVERY YEAR IN CAPTIONING AND DESCRIPTION AND SPECIFICALLY IN PROGRAMMING THAT THE FCC DOES NOT REQUIRE, ESPECIALLY AROUND INSTRUCTIONAL MATERIALS. AND WE DO IT IN MULTIPLE LANGUAGES. AND IN ADDITION, WE SUPPORT RESEARCH INTO MAKING DESCRIPTION AND FAIRLY SUCCESSFULLY MUCH MORE EFFICIENT AND EFFECTIVE, IT'S AN INCREDIBLY LABOR- LABOR-INTENSIVE TASK, AND JUST A PLUG SINCE MY OLD NIDA FRIEND IS IN THE ROOM IS THAT OCEP AND NIDR WAY BACK WERE THE ONES THAT SUPPORT OHED THE RESEARCH TO DEVELOP CLOSED CAPTIONING. SO WE HAVE A LONG HISTORY TOGETHER AND WE ARE NOW WORKING WITH SOME OF YOUR STAFF ON SOME ACCESSIBILITY ISSUES SO WE THANK YOU FOR YOUR PRESENTATION AND SUPPORT. >> THAT'S GREAT. MAY I ASK YOU FOR WHAT MIGHT BE TRADE SECRETS? HOW MUCH ARE YOU SPENDING? [LAUGHTER] WHAT'S THE GAP? >> I'M SORT OF -- I WOULD SAY ABOUT EIGHT TO $10 MILLION A YEAR. BUT THAT'S A GUESS WITHOUT MY BUDGET SHEETS IN FRONT OF ME. BUT IT'S A PRETTY SIZABLE INVESTMENT. >> RIGHT. SO THESE ARE THE STRATEGIC ISSUES THAT WHEN WE HAVE AN OPEN DOCKET OR WHEN WE HAVE A DISABILITY ADVISORY COMMITTEE, YOU KNOW, GROUP SORT OF DETERMINING RECOMMENDATIONS IN THIS SPACE, I THINK WE NEED TO BE ABLE TO THINK ABOUT ALL OF THIS. IT MAY BE THAT WE HAVE TO TAKE INCREMENTAL STEPS. OF COURSE WE'RE ALL FAMILIAR WITH THAT. BUT INCREMENTAL STEPS THAT ARE STRATEGICALLY INTELLIGENT, I THINK IS WHERE WE WANT TO BE. SO IF WE'RE NOT HEARING ENOUGH ABOUT, ALL RIGHT, WHERE IS THE FALLOUT, THE 8 TO $10 MILLION THAT NEEDS TO BE COVERED BY SOMEBODY, IS THERE SOMETHING THAT WE'RE DOING IN THE UNIVERSAL SERVICE SPACE TO ADDRESS SOME PIECE OF THAT. RIGHT? WE HAVE TO HEAR. >> SPEAKING OF NUMBERS, DOES THE FCC MONITOR THE USE OF SOME OF THESE TECHNOLOGIES? DO WE KNOW HOW OFTEN PEOPLE ARE USING CLOSED CAPTIONING, DO WE KNOW HOW OFTEN PEOPLE ARE USING THE VIDEO DESCRIPTION PROGRAMMING, ET CETERA? >> ROSALYN, DO WE KNOW THE ANSWER TO THAT? WE DO NOT MONITOR IT. OTHER THAN ANECDOTALLY. PART WHAT IF WE DO WITH COMPLAINTS IS WE GET DATA FROM PEOPLE TELLING US WHAT THEY'RE USING AND THE LEVEL OF SOPHISTICATION THAT THEY HAVE WILL APPEAR IN THE FACT PATTERN OF THE COMPLAINT. BECAUSE IT'S ANECDOTAL, WE'RE NOT ABLE TO LAUNCH FROM THAT, BUT IT DOES POINT TO POLICY DEVELOPMENT AND QUESTIONS THAT WE ASK IF OUR OPEN PROCEEDINGS. >> GOTCHA. LARRY. >> YOU WANTED A TRADE SECRET, SOMETHING THAT WE'VE DONE THAT WE THINK HAS REALLY STRETCHED OUR MONEY IS THAT IN THE PAST, WHEN WE'VE DONE DESCRIPTION, WE HAVE TO ESSENTIALLY BUY THE RIGHTS TO THE PROGRAM FIRST, AND THEN DESCRIBE IT AND THEN TURN IT LOOSE. BUT WHAT WE'VE BEEN ABLE TO DO ESPECIALLY WITH SOME OF THE MAJOR NETWORKS IS WE'VE CRAFTED AGREEMENTS WITH THEM WHERE THEY WILL SUPPLY THE PROGRAM FOR FREE, IN EXCHANGE FOR -- WE GIVE IT BACK TO THEM DESCRIBED, AND THEN THEY CAN USE IT ANY WAY THEY SEE FIT. SO WE'VE TAKEN OUR INVESTMENT DOLLARS THAT HAVE BEEN STRETCHED DRAMATICALLY THROUGH THAT APPROACH. >> BUT IT SOUNDS LIKE YOU'RE TARGETING THAT AT THE MIDSTREAM LEVEL, THAT'S EXACTLY WHAT I WAS TALKING ABOUT. THIS IS SPECIAL EDUCATION PROGRAMMING, RIGHT? >> YES. >> SO YOU'RE GETTING A LEASE OF THE CONTENT TO ADD VALUE IN THE DESCRIPTION AND THEN YOU GIVE IT BACK TO THEM AND THAT'S WHEN THEY PRODUCE IT AND PUT IT OUT THERE. >> CORRECT. WE'VE ALSO DONE A LOT OF WORK ON BORN ACCESSIBLE WITH PRODUCERS AND PUBLISHERS -- >> WHAT DID YOU CALL IT? >> BORN ACCESSIBLE. >> OKAY. GOT IT. THANK YOU. I APOLOGIZE, I HAD NOT HEARD OF THAT. ANYTHING ELSE? >> ALL RIGHT. THANK YOU VERY MUCH. >> THANK YOU VERY THANK YOU VERY MUCH. THANK YOU. [APPLAUSE] >> WE'RE GOING TO MOVE ON TO THE LAST SEGMENT OF THE MORNING WHICH WE'VE RESERVED FOR COMMITTEE BUSINESS, AND I'LL ASK DR. SUSAN DANIELS TO TAKE OVER. >> THANK YOU. THANK YOU, MR. MARCUS, FOR BEING HERE. IT WAS NICE TO HAVE OUR FIRST INTERACTION WITH THE FEDERAL COMMUNICATIONS COMMISSION, AND WE LOOK FORWARD TO OH CONTINUING TO WORK WITH YOU. SO I'LL TAKE US THROUGH OUR COMMITTEE BUSINESS. WE HAVE A NUMBER OF INTERESTING UPDATES TO SHARE WITH YOU ALL. JUST TO MAKE SURE I ACKNOWLEDGE OUR STAFF AT THE OARC WHO HELP MAKE THIS MEETING POSSIBLE AND ALL THE EEFNTSZ THROUGHOUT AUTISM AWARENESS MONTH AND THROUGHOUT THE YEAR FOR THE COMMITTEE, THANK YOU TO ALL OF YOU FOR ALL THAT YOU DO. SO APRIL IS NATIONAL AUTISM AWARENESS MONTH, AND ACTUALLY WORLD AUTISM AWARENESS MONTH AND IT'S BEEN DECLARED, AND WE HAVE A NUMBER OF ACTIVITIES THAT HAVE BEEN GOING ON ACROSS THE U.S. GOVERNMENT AND AROUND THE WORLD, SO JUST WANTED TO POINT OUT SOME THINGS WE DO HAVE ON OUR WEBSITE, WE DO HAVE AN AUTISM AWARENESS MONTH PAGE AND THERE YOU CAN FIND THE 2019 PRESIDENTIAL PROCLAMATION FROM PRESIDENT TRUMP, ALSO THE 2019UN SECRETARY-GENERAL MESSAGE, THE MESSAGE ON WORLD AUTISM AWARENESS DAY. THE INTERAGENCY AUTISM AWARENESS INTERAGENCY ROUNDTABLE IS THAT TOOK PLACE AT THE INDIAN HEALTH SERVICE, THE INFORMATION FOR THAT IS ALSO AVAILABLE ON OUR WEBSITE, THE UNITED NATION HS A SPECIAL EVENT OH ON ASSISTIVE TECHNOLOGIES AND YOU PROBABLY NOTICED IN THE PUBLIC COMMENTS THAT WERE SHARED FOR THIS AFTERNOON THE WRITTEN COMMENTS, THERE WERE A NUMBER OF PEOPLE THAT COMMENTED ONISH ARE EUS RELATED TO THAT. ALSO THE NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES HAD A REDDIT EVENT. AND I'D LIKE TO BRING YOUR ATTENTION TO AN EVENT THAT OUR OFFICE IS HOSTING ON BEHALF OF THE NATIONAL INSTITUTE OF MENTAL HEALTH NEXT WEEK, OUR SPECIAL EVENT THAT WE HOLD ANNUALLY FOR AUTISM AWARENESS MONTH, AND THIS TIME WE'RE GOING TO BE FEATURING A PRESENTATION CALLED "A WOMAN'S VOICE, UNDERSTANDING AUTISTIC NEEDS," THAT WILL BE FEATURING AUTHORS AND EDITORS FROM TWO BOOKS ABOUT THE EXPERIENCES OF WOMEN ON THE AUTISM SPECTRUM. SO THE TWO BOOKS SPEE FEE TOURED WILL BE SPECTRUM SPEC -- TWO AUTHORS, AND THE AUTHOR OF YOU A TIM AND HEELS, AND THEY'RE GOING TO PRESENT THEIR BOOKS AND HAVE A CONVERSATION WITH US AND THERE WILL BE AN OPPORTUNITY TO MEET THEM AFTER THE EVENT. IT'S OPEN TO THE PUBLIC AND IT WILL BE HERE ON NIH CAMPUS CAMPUS AND WE WELCOME ANYONE TO JOIN US EITHER BY WEBCAST OR IN PERSON. SO IN TERMS OF COMMITTEE BUSINESS, I'D LIKE TO BRING YOUR ATTENTION TO THE SUMMARY OF ADVANCES THAT IS NOW AVAILABLE. WE HAVE HARD COPIES HERE IN THE ROOM AND IT'S AVAILABLE ONLINE. THIS ANNUAL REPORT THAT'S REQUIRED BY THE AUTISM CARES ACT OF 2014 FEATURES LAY FRIENDLY SCWUM SUM RES OF THE TOP 20 MOST SIGNIFICANT ADVANCES IN ASD BIOMEDICAL AND SERVICES RESEARCH THAT WERE SELECTED BY THE IACC THROUGHOUT THE YEAR. WE ALSO INCLUDE ARTICLES ADDRESSING ALL SEVEN TOPIC AREAS OF THE IACC STRATEGIC PLAN SO YOU WILL WANT TO LOOK AT THAT, AND IN THE SLIDE SET, I'M NOT GOING TO READ ALL OF THIS BUT I WE'VE LISTED WHAT THE ARTICLES ARE AND THAT'S FOR YOUR REFERENCE IF ANYONE IS GOING BACK TO THE SLIDE SET. WOULD I BE ABLE TO GET HELP ADVANCING THE SLIDES BECAUSE THIS IS NOT WORKING FOR ME VERY WELL. ALL RIGHT. SO THE NEXT REPORT I'D LIKE TO SHARE WITH YOU AS SOME OF YOU HAVE BEEN WAITING FOR THIS, THE AUTISM CARES ABT REPORT TO CONGRESS IS NOW YOU AVAILABLE AND SO THIS WAS JUST PUBLISHED AND MADE AVAILABLE TO THE PUBLIC LAST WEEK AND IT'S BEEN RECEIVED BY CONGRESS. SO THIS AS I SAID IS REQUIRED BY THE AUTISM CARES ACT OF 2014 AND IT'S A REPORT THAT COVERS THE ACTIVITIES OF ALL U.S. FEDERAL AGENCIES THAT ARE DOING AUTISM-RELATED WORK, AND SO OUR OFFICE COORDINATED THIS OH ON BEHALF OF ON BEHALF OF THE DEPARTMENT OF HEALTH AND HUMAN SERVICES AND WE DID IT IN PARTNERSHIP WITH 21 DIFFERENT FEDERAL AGENCIES AND DEPARTMENTS, AND THIS REPORT DETAILS PROGRESS ON ACTIVITIES RELATED TO ASD AND OTHER DEVELOPMENTAL DISORDERS ACROSS THE FEDERAL GOVERNMENT, SO THERE'S DESCRIPTION OF VARIOUS PROGRAMS INITIATIVES AND ACTIVITIES AND SO YOU'LL WANT IT REVIEW THAT TO LEARN MORE ABOUT WHAT THE FEDERAL GOVERNMENT HAS BEEN DOING, AND FOR THE COMMITTEE IN PARTICULAR, WITH REGARD TO THE STRATEGIC PLAN, SOME OF THE DIFFERENT AREAS THAT ARE COVERED. SO THIS IS JUST A LIST AND I THINK THE NEXT SLIDE ALSO OF THE DIFFERENT FEDERAL AGENCIES AND DEPARTMENTS THAT PARTICIPATED AND THEN THE NEXT THREE SLIDES WHICH I'M NOT GOING TO READ BUT JUST TO POINT OUT THERE'S A TABLE THAT TELLS YOU WHAT DIFFERENT PARTS OF THE STRATEGIC PLAN ARE COVERED BY WHICH AGENCY AND THIS WAS SOMETHING NEW THAT WE ADDED TO THE REPORT THIS YEAR THAT YOU MIGHT FIND HELPFUL AND WANT TO REVIEW LATER, SO WE PUT IT IN HERE FOR REFERENCE AND IT'S ALSO IN THE REPORT. SO MOVING ON TO THE NEXT REPORT, OUR OFFICE DOES DO A LOT OF REPORTS. WE HAVE A NEW REPORT COMING OUT SOON THAT I WANTED TO BRING TO YOUR ATTENTION. I KNOW I'VE DISCUSSED IT BEFORE IN VARIOUS STAGES BUT WE'RE CLOSE TO BEING ABLE TO PUBLISH THIS ONE. WE'RE GOING TO HAVE OUR FIRST IACC INTERNATIONAL ASD RESEARCH PORTFOLIO ANALYSIS REPORT, AND SO OARC HAS BEEN LEADING A COLLABORATIVE EFFORT TO PRODUCE THIS FIRST REPORT THAT WILL INVOLVE MORE THAN JUST THE U.S., SO WE'RE USING THE 2016 DATASET, AND IT WILL DESCRIBE AND COMPARE TRENDS IN ASD RESEARCH FUNDING ACROSS FOUR COUNTRIES: THE U.S., THE UNITED KINGDOM, CANADA, AND AUSTRALIA. SO WE ARE REALLY LOOKING FORWARD TO SEEING THIS AND YOU'LL BE ABLE TO SEE WHAT AREAS OF STRENGTH EACH COUNTRY BRINGS TO THE TABLE AND SOME OF THE COMPARISONS OF THESE RESEARCH TATA AND WE DATA, AND WE WILL BE PUTTING THE DATA RIGHT INTO THE OARC AND IACC RESEARCH DATABASE SO ANYONE CAN ACCESS IT, AND WE EXPECT TO HAVE THE HARD COPY FOR YOU IN THE JULY MEETING AND WE'LL PROBABLY RELEASE IT BEFORE THEN. BUT WE'LL BE HAPPY TO SHARE A LITTLE BIT OF THE DATA AT THE NEXT MEETING. ANOTHER UP DATE I WANTED TO GIVE YOU JUST BASED ON A RECENT MEETING THAT I ATTEND ATTENDED ON BEHALF OF THE NIH, THE INTERNATIONAL SOCIETY FOR AUTISM RESEARCH HELD A MEETING ON AUTISM AND SUICIDE RESEARCH PRIORITY SETTING AT THE UNIVERSITY OF NOTTINGHAM IN THE U.K. AND I WANTED TO BRING THIS TO YOUR ATTENTION BECAUSE I KNOW THE IACC HAS BEEN INTERESTED IN THIS ISSUE OF SUICIDE AND AUTISM AND WE ARE GOING TO BE COVERING IT IN UPCOMING ACTIVITIES. SO THE FIRST BULLET IS A LITTLE BIT OF BACKGROUND ON AUTISM AND SUICIDE THAT AUTISTIC PEOPLE ARE SIGNIFICANTLY MORE LIKELY TO DIE BY SUICIDE THAN THE GENERAL POPULATION BASED ON RECENT DATA AND THAT THIS PROBLEM HAS BEEN DISCUSSED IN THE IACC AS SOMETHING OF CONCERN THAT WE WANT TO ADDRESS THROUGH RESEARCH AND SERVICE RELATED ACTIVITIES. SO THIS MEETING WAS HELD BY PARTNERS INCLUDING THE UNIVERSITY OF NOTTINGHAM, NEW CASTLE UNIVERSITY, COVENTRY UNIVERSITY, AUTISTICA, INSAR AND THE JAMES LIND ALLIANCE. SO FOLLOWED A THREE-YEAR MULTITIERED SERIES OF MEETINGS AND REQUESTS FOR PUBLIC INPUT CONDUCTED BY AUTISTICA AND OTHER PARTNERS IN THE U.K., THEY WERE ABLE TO COLLECT INFORMATION FROM THE PUBLIC AND THEN PRIORITIZE INTO 48 PRIORITY AREAS FOR RESEARCH FOR AUTISM AND SUICIDE, AND AT THIS MEETING, THE GOAL WAS TO NARROW THIS DOWN TO THE TOP 10 RESEARCH AREAS THAT WOULD FORM A RESEARCH AGENDA AND SO THE MEETING WAS SUCCESSFUL AND CAME UP WITH A TOP 10 AND THIS IS GOING TO BE RELEASED AT THE UPCOMING MEETING OF THE INTERNATIONAL SOCIETY FOR AUTISM RESEARCH IN MONTREAL. I THINK ON THE NEXT SLIDE, THERE'S A LITTLE BIT OF INFORMATION. BY THE WAY, THE MEETING THAT I ATTENDED INVOLVED 30 WORKSHOP PARTICIPANTS INCLUDING SELF ADVOCATES, FAMILY MEMBERS, RESEARCHERS AND OTHER COMMUNITY MEMBERS, AND ONE OF THE STRENGTHS OF THIS PROCESS HAS BEEN VERY SIGNIFICANT INVOLVEMENT OF STAKEHOLDERS FROM THE COMMUNITY WHO HAD A VERY STRONG VOICE IN PUTTING THIS TOGETHER AND ALSO AT THE MEETING, IT WAS REALLY VERY STRIKING, THE NUMBER OF STORIES SHARED ABOUT THE IMPACT OF THIS PROBLEM AND ALSO THE GENERATIONAL IMPACT MANY OF THE FAMILIES AND INDIVIDUALS WHO WERE THERE DESCRIBED THIS BEING AN ISSUE OVER MULTIPLE GENERATIONS OF THEIR FAMILIES AND WANTING TO SEE A SOLUTION THAT WOULD HELP THEM TO BE ABLE TO OVERCOME THIS PROBLEM. AND THERE WAS CERTAINLY SIGNIFICANT INTEREST IN BOTH ADDRESSNG SERVICE AND SUPPORT NEEDS THAT WOULD HELP PEOPLE TO BE ABLE TO AVOID THESE ISSUES AS WELL AS UNDERSTANDING ANY BIOLOGICAL FACTORS THAT ARE PLAYING INTO IT. SO IF YOU COULD GO BACK TO THE PREVIOUS SLIDE, SO AT THE INSAR MEETING, WE HAVE SOME INFORMATION ON MAY THIRD, THERE'S GOING TO BE A PRESENTATION ON THIS AND DR. SARAH CASSIDY, WHO IS THE CO-CHAIR OF THIS WORKSHOP, WILL BE A SPEAKER AT AN UPCOMING IACC WORKSHOP THAT I'M GOING TO TELL YOU ABOUT IN A MINUTE ON ADDRESSING THE MENTAL HEALTH NEEDS OF PEOPLE ON THE AUTISM SPECTRUM. OKAY, WE CAN GO TO THE NEXT SLIDE. SO TO GIVE YOU A BRIEF UPDATE ON THE IACC HEALTH OUTCOMES WORKING GROUP, AS YOU KNOW, WE'VE CONVENED A WORKING GROUP ON HEALTH AND WELLNESS ISSUES FOR INDIVIDUALS WITH ASD, AND THE CO-CHAIRS OF THIS ARE DR. DAVID AMARAL AND DR. JULIE TAYLOR, AND THE SCOPE INVOLVES HEALTH AND WELLNESS, CO-OCCURRING CONDITIONS, PREMATURE MORTALITY, PATIENT-PROVIDER INTERACTIONS AND PARENTAL AND FAMILY MEMBER HEALTH. SO THE WORKING GROUP HAS HELD A NUMBER OF DIFFERENT ACTIVITIES INCLUDING SOME CONFERENCE CALLS, AND WE HAD A WORKSHOP IN SEPTEMBER THAT COVERED HEALTH EPIDEMIOLOGY AND SEVERAL CO-OCCURRING CONDITIONS, PHYSICAL HEALTH CONDITIONS AND ISSUES RELATED TO PATIENT-PROVIDER INTERACTIONS IN THE PHYSICAL HEALTH SPACE. SO WE NOW HAVE AN UPCOMING ACTIVITY WHICH WE DISCUSSED AT THE JANUARY MEETING. WE'VE PLANNED A WORKSHOP THAT WILL BE ON ADDRESSING MENTAL HEALTH NEEDS OF PEOPLE ON THE AUTISM SPECTRUM AND THIS WILL BE TAKING PLACE ON MAY 21ST, JUST DOWN THE STREET AT THE -- IT SAYS NEUROSCIENCE CENTER BUT I BELIEVE IT'S HAPPENING AT THE HILTON WASHINGTON HOTEL JUST DOWN THE STREET IN ROCKVILLE. THE WORKSHOP WILL FOCUS ON MENTAL HEMENT RELATED TOPICS INCLUDING ANXIETY, DEPRESSION, SUICIDE, SELF INJURIOUS BEHAVIORS AND AGGRESSION AND THE MENTAL HEALTH SERVICE SYSTEM. SO WE WELCOME ANYONE TO COME TO THIS, IT'S GOING TO BE OPEN TO THE PUBLIC AND WEBCAST AS OUR USUAL PRACTICE, AND WE WILL BE PUTTING OUT A SPECIAL CALL FOR PUBLIC COMMENTS THAT ARE RELATED TO THESE SPECIFIC TOPICS SO YOU CAN BE WATCHING FOR THAT. AND THE WORKING GROUP IS GOING TO CONTINUE WORKING THROUGH SOME CONFERENCE CALLS AND PRODUCING A WRITTEN DOCUMENT AND WE'LL KEEP YOU UP TO DATE ON THAT. JULIE, DO YOU HAVE ANY COMMENTS YOU'D LIKE TO ADD TO THAT BRIEF UPDATE? >> I DON'T THINK. SO I THINK YOU'VE IS UP SUM RISED IT PRETTY WELL, SUSAN. THINK AS WE TALKED ABOUT I THE LAST MEETING SOMETHING THAT CAME OUT AND WE DIDN'T GET A CHANCE TO TALK ABOUT MUCH IN THE FIRST MEETING IS MENTAL HEALTH, SO WE'RE EXCITE TODAY REALLY DIG INTO WHAT WE KNOW, WHAT WE KNOW ABOUT TREATMENT AND WHAT WE NEED TO KNOW AND WHAT WE WANT TO MAYBE THINK ABOUT PUTTING IN THIS WRITTEN DOCUMENT. >> EXCELLENT. SO WE LOOK FORWARD TO KEEPING YOU POSTED. WE WILL BE SENDING OUT EMAILS AND OTHER TYPES OF INFORMATION TO HELP YOU GET READY FOR THIS, AND IACC MEMBERS, OF COURSE, ARE WELCOME TO COME AND WE WILL HELP TAKE CARE OF YOUR LOGISTICAL NEEDS FOR THAT. SO THE NEXT SLIDE IS AN UPDATE ON THE IACC HOUSING WORKING GROUP, AND SO WE'RE HAPPY TO SAY THAT THIS HOUSING WORKING GROUP IS IN THE PROCESS OF BEING CONVENE ED AND WE'RE GOING TO BE COVERING A SCOPE INCLUDING RESEARCH AND BEST PRACTICES ON HOUSING, IMPLEMENTATION OF CURRENT FEDERAL REGULATIONS, AND HOUSING ISSUES THAT ARE FACE BID AUTISTIC INDIVIDUALS WITH MORE SEVERE DISABILITIES OR JUST ACROSS THE ENTIRE SPECTRUM AND ACROSS AGE AS WELL. OUR CHAIR IS ALISON SINGER FROM THE COMMITTEE, AND AS I SAID, THE WORKING GROUP IS IN THE PROCESS OF BEING CONVENED SO WAITING TO CONFIRM ALL OF THE MEMBERSHIP BUT WE WILL BE SHARING THAT INFORMATION WITH YOU WHEN IT'S FINALIZED. SO THE ACTIVITIES WILL INCLUDE WORKING GROUP CONFERENCE CALLS AND A TOWN HALL MEETING OR OH AN AK ATIVITY ALONG THOSE LINES AND OUR TARGET DATE IS JUNE 2019, BUT WE'LL UPDATE YOU ON SPECIFICS AS SOON AS THOSE ARE AVAILABLE. AND THIS WORKING GROUP LIKE THE OTHER ONE WILL RUN THROUGH SEPTEMBER 2019 WHICH IS THE PERIOD OF THE AUTHORIZATION UNDER THE AUTISM CARES ACT OF 2014. AND WE ARE AWAITING A RE-AUTHORIZATION, THERE ARE BILLS BOTH IN THE SENATE AND THE HOUSE BUT THEY HAVE NOT BEEN ENACTED YET, SO WE ANTICIPATE THAT THERE WILL BE A NEW AUTISM LAW AVAILABLE THAT RIGHT NOW WE ARE PLANNING TO RUN THROUGH YOU 2019, SEPTEMBER 30TH, SO THAT'S WHEN THE ACTIVITIES OF THESE WORKING GROUPS WILL CONCLUDE. SO MAYBE I SHOULD STOP FOR JUST A MOMENT BEFORE MOVING ON. ARE THERE ANY QUESTIONS ABOUT WORKING GROUPS OR ANYTHING? I KNOW I'VE BEEN IN TOUCH WITH PRETTY MUCH EVERYONE HERE ABOUT THOSE BUT IF YOU DO HAVE ANY QUESTIONS, PLEASE LET ME KNOW AND WE'LL BE HAPPY TO KEEP YOU UPDATED ON THOSE ACTIVITIES. AND WE'LL SHARE UPDATES AT THE JULY MEETING. >> SO IS IACC GOING TO DISBAND AND BE REFORMED IN SEPTEMBER? >> SO WE'RE WAITING FOR -- WE'LL HAVE TO WAIT FOR THE ENACTMENT OF A NEW LAW, AND THEN WHATEVER THE REQUIREMENTS ARE UNDER THAT NEW LAW, THE SECRETARY WILL CONVENE A NEW COMMITTEE BASED ON THE NEW REQUIREMENTS. AND I KNOW MANY OF YOU HAVE BEEN THROUGH THAT PROCESS BEFORE, THAT SOME PEOPLE ARE REAPPOINTED AND OTHERS ARE NEW PEOPLE THAT ARE APPOINTED BY THE SECRETARY. SO IN JULY, WE SHOULD HAVE MORE OF AN IDEA OF WHAT HAS HAPPENED AND WE'LL KEEP YOU UPDATED BUT FOR THE MOMENT, WE DO KNOW THAT BILLS HAVE BEEN INTRODUCED ON BOTH SIDES, THE HOUSE AND THE SENATE THE. SO NEXT I WANTED TO SHARE WITH YOU THE IACC STRATEGIC PLAN UPDATE, WHICH WE'VE BEEN WORKING ON. AS WE TOLD YOU IN JANUARY, WE PROPOSED TO YOU THE IDEA OF HAVING A STRATEGIC PLAN UPDATE THAT'S REALLY JUST AN UPDATE OF THE COMMITTEE'S ACTIVITIES THE THAT RELATE TO THE STRATEGIC PLAN AS WE WENT THROUGH A 1 1/2 YEAR PROCESS PUTTING TOGETHER THE PREVIOUS STRATEGIC PLAN WITH ALL NEW OBJECTIVES AND COMPLETELY NEW UPDATES ON RESEARCH, SERVICES AND POLICY, AND FELT THAT IT WASN'T REALLY NECESSARY TO GO RE-DO ALL OF THAT JUST WITHIN ANOTHER YEAR, SO WE HAVE NOW YOU PUT TOGETHER THIS FIRST DRAFT OF THIS REPORT THAT JUST BASICALLY READS OUT WHAT THE COMMITTEE HAS BEEN DOING WITH REGARD TO THE STRATEGIC PLAN, AND SO YOU HAVE THAT DRAFT IN YOUR PACKETS, I SENT THEM OUT AND IT'S ALSO UP ONLINE, SO BASICALLY THE THREE COMPONENTS THAT ARE THERE NOW ARE THE SUMMARY OF THE HEALTH OUTCOMES WORKING GROUP AND 2018 WORKSHOP, WHICH I JUST DID DESCRIBED. WE ALSO HAVE A SUMMARY OF THE 2016 IACC PORTFOLIO ANALYSIS REPORT, WHICH IS THE FIRST PORTFOLIO ANALYSIS REPORT TO ADDRESS THE SPECIFIC NEW OBJECTIVES IN THE STRATEGIC PLAN, AND THEN A SUMMARY OF THE AUTISM CARES ACT REPORT TO CONGRESS THAT JUST CAME OUT. SO THOSE ARE THE THREE COMPONENTS WE HAVE NOW, AND THE PLAN IS TO ALSO INCLUDE A SUMMARY OF THE MENTAL HEALTH WORKSHOP THAT WE'RE GOING TO BE HAVING IN MAY, AND THE HOUSING WORKING GROUP AND ANY OF ITS ACTIVITIES, AND THE PLAN WOULD BE TO INCLUDE ALL OF THAT MATERIAL AND THEN BY THE END OF THE TERM OF THIS COMMITTEE, TO SUBMIT THAT TO CONGRESS AS OUR REPORT AND IT WOULD COVER BOTH 2018 AND 19 ACTIVITIES TOGETHER. AND SO WITH THE DRAFT I'VE SENT -- I'LL SEND YOU ANOTHER EMAIL THAT GIVES YOU A DEADLINE BUT I'LL GIVE YOU SOME AMPLE TIME TO BE ABLE TO REVIEW IT AND LET US KNOW IF YOU HAVE ANY FEEDBACK, IF THERE'S ANYTHING THAT YOU WANT TO SEE US ADD TO IT OR MODIFY IN ANY WAY, WE'LL HAVE SOME TIME TO WORK ON IT AND BY THE TIME YOU SEE IT IN JULY, WE'LL HAVE INCORPORATED THOSE CHANGES PLUS THE NEW MATERIAL. AND SO OUR HOPE WOULD BE TO GET A PROVISIONAL APPROVAL IN JULY, MAYBE WITH A FEW ADDITIONAL CHANGES YOU WANT US TO MAKE BEFORE PUBLISHING IT, BUT THEN WE WOULD BE ABLE TO COMPLETE IT BEFORE THE END OF THE TERM. SO ARE THERE ANY QUESTIONS ABOUT THAT? GREAT. SO WE'LL KEEP YOU POSTED ON THAT AS WELL, SO WE CAN GO TO THE NEXT SLIDE. MAYBE THIS IS THE BEST ONE. IT'S LUNCH. SO FOR LUNCH, WE HAVE SOME ORDERS, I KNOW THE COMMITTEE MEMBERS MADE ORDERS WITH PANERA SO THOSE SHOULD BE COMING. WE ARE AHEAD OF SCHEDULE, SO THAT'S GREAT. GREAT NEWS. SO IT IS A TIME THAT IF WE DID WANT TO HAVE ANY ADDITIONAL DISCUSSION ON ANY TOPICS, THIS WOULD BE A GOOD TIME. SO WE COULD DO THAT. I KNOW JOHN ROBISON -- MAYBE BEFORE WE BREAK FOR LUNCH, I DIDN'T REALIZE THAT WE HAD BEEN SO INCREDIBLY EFFICIENT THAT WE WERE EARLY. JOHN, YOU HAD MENTIONED THAT YOU HAD AN ISSUE THAT YOU WANTED TO SHARE WITH THE COMMITTEE AND SO I DON'T KNOW IF THIS WOULD BE A GOOD TIME FOR YOU, IF YOU WOULD LIKE TO BRING THAT UP BEFORE WE BREAK FOR LUNCH? >> I PUBLISHED A COMMENTARY IN THE AUTISM RESEARCH JOURNAL IN THE LAST ISSUE. THE TOPIC IS "WHAT WE DON'T KNOW ABOUT AUTISM IN ADULTHOOD," AND IT KIND OF TIES IN WITH WHAT WE SAW IN THE CDC PRESENTATION EARLIER TODAY. WE HAVE A LOT OF DATA COMING TO US ABOUT ADULT OUTCOMES THAT ARE FRIGHTENING OR ALARMING. WE HEAR WE ARE AT RISK FOR SUICIDE, WE HAVE A LIFE EXPECTANCY THAT IS 17 YEARS SHORTER OR IN SOME CASES 20-SOME YEARS SHORTER, WE HEAR THAT WE ARE MORE VULNERABLE TO ALL MANNER OF DISEASES AND DISORDERS. BUT IN LOOKING AT THAT DATA, I'VE BEGUN TO QUESTION, WHO DOES IT REALLY APPLY TO? HOW MUCH OF THE AUTISTIC POPULATION? IS BECAUSE I RILE REELIZE REALIZE THE VAS T MAJORITY OF THE AUTISTIC POPULATION IS PROBABLY UNAWARE. THEREFORE THE STATEMENTS THAT WE COMMONLY HEAR SH AND WE , AND WE HEARD THE M TODAY, A COUPLE FOLKS SAID, I UNDERSTAND 80% OF YOU A IT TIS TICK OF AUTISTIC PEOPLE ARE UNEMPLOYED. THAT'S A REAL COMMON QUOTE. BUT IN FACT, WE HAVE NO IDEA WHAT PERCENTAGE ARE UNEMPLOYED BECAUSE WE DON'T EVEN KNOW WHO 5% OF THEM ARE. THE THING THAT I RAISED FOR DISCUSSION IN MY COMMENTARY IS THIS, WE HAVE TWO SOURCES OF PREVALENCE DATA THAT ARE CREDIBLE. WE HAVE ON THE ONE HAND, WE HAVE THIS ARRAY OF DATA FROM OUR CDC AND OTHER NATIONAL PUBLIC HEALTH AGENCIES IN OTHER COUNTRIES, AND THAT SUGGESTS A SIGNIFICANT RATE OF AUTISM. WHETHER THAT NUMBER IS 1 1/2%, 2%, 2 1/2, 3%, IT'S SIGNIFICANT. THEN WE HAVE THE ABRUGA SERIES OF STUDIES THAT WERE CONDUCTED ABOUT 10 YEARS AGO. WE DISCUSSED IT A FEW YEARS AGO, WHEN THA WAS PUBLISHED, BUT THOSE OF YOU WHO'VE READ THAT, YOU'LL RECALL THAT BRUGA FOUND A SIMILAR RATE OF AUTISM IN ADULTS NA IN IT NO MATTER WHAT ERA THEY WERE BORN, BUT BRUGA FOUND THAT OLDER ADULTS WERE NOT DIAGNOSED WITH AUTISM. SO WE IDENTIFIED SOME EVIDENCE FOR A CONSISTENT AUTISM PREVALENCE THROUGH THE 20TH CENTURY, BUT DIMINISHING AWARENESS AS PEOPLE GET OLDER. THAT'S PRETTY CONSISTENT WITH MODERN KNOWLEDGE. IF YOU TAKE THAT AND YOU THEN COMPARE THAT TO THE PUBLIC HEALTH STUDY IES THAT MAKE THE MOST ALARMING PREDICTIONS ABOUT AUTISM, YOU SEE A POTENTIAL DISCONNECT. FOR EXAMPLE, WE HAVE PRAISE ED THE STUDY FROM KAISER HEALTH SYSTEMS SYSTEMS. IN THAT STUDY, WE LOOKED AT THE RESULTS WHICH SHOWED STRIKINGLY WORSE OUTCOMES FOR AUTISTIC PEOPLE, AND WE SAW THAT THE METHODOLOGY SEEMED REALLY GOOD. SHE TOOK EVERY AUTISTIC PERSON WHO WAS IN THE KAISER NORTHERN CALIFORNIA SYSTEM, AND SHE COMPARED THEIR HEALTH ISSUES AND MORTALITY WITH A SIMILAR LARGE POPULATION OF NON-AUTISTIC PEOPLE IN THE SYSTEM, AND WE THINK WHAT BETTER INFORMATION CAN WE HAVE? BUT WE NEVER REALLY DISCUSSED HOW REPRESENTATIVE IT IS OF THE TRUE AUTISTIC POPULATION. SHE FOUND 1500 PEOPLE IN THAT CROHN STUDY, AND WE THINK THAT'S GREAT, BUT IN FACT, IF YOU LOOK AT WHAT WE KNOW OF PREVALENCE DATA, THERE SHOULD BE 20 OR 30,000 PEOPLE IN THE SAMPLE, NOT 1500. SO WHAT DOES THAT MEAN? DOES THAT MEAN THAT MOST OF THESE PEOPLE DO NOT THE HAVE ENOUGH DISABILITY THAT THEY REQUIRE AUTISM SERVICES? DOES IT MEAN THAT THEY GET AUTISM SERVICES IN SOME OTHER WAY? DOES IT MEAN THAT NO SERVICES ARE AVAILABLE? WHEN I LOOK AT ALL OF THE PROBLEMS THAT THE CROHN STUDY IDENTIFIED, IT'S DIFFICULT FOR ME TO BELIEVE THAT WE CAN ANSWER THAT BY SAYING ALL THOSE PEOPLE ARE OUT THERE AND THEY'RE VERY DISABLED BUT THERE ARE NO SERVICES FOR ADULTS. BECAUSE CRO HSM HN -- SHE IDENTIFIED A LOT OF PROBLEMS. AND THAT LEADS ME TO CONCLUDE THAT WE HAVE A REAL PRESSING ISSUE HERE. IF THE CROHN STUDY AND THESE OTHER STUDIES THAT WE HAVE DONE ARE TRULY REPRESENTATIVE OF THE LARGE AUTISTIC POPULATION THAT'S UNIDENTIFIED, WE HAVE A MAJOR PUBLIC HEALTH PROBLEM THAT IS NOT BEING ADDRESSED AND IS OF LONGSTANDING. IF, ON THE OTHER HAND, THE PEOPLE ARE NOT IDENTIFIED BECAUSE THERE ISN'T A NEED TO IDENTIFY THEM BECAUSE THEY DON'T HAVE SIGNIFICANT MEDICAL PROBLEMS RELATED TO AUTISM IN ADULTHOOD, THAT'S A POSITIVE OUTCOME FINDING THAT I WOULD THINK EVERY AUTISTIC PERSON WOULD WANT TO KNOW. IT SEEMS TO ME THAT IF WE LOOK AT STUDIES LIKE CROHN, LIKE AUTISTICA, THESE STUDIES ALL DRAW FOR AN AUTISTIC POPULATION, THEY DRAW AUTISTIC PEOPLE IN A PUBLIC HEALTH DATABASE OR THEY DRAW AUTISTIC PEOPLE WHO ARE CONNECTED TO AUTISTICA IN THE U.K., OR WHO ARE RESIDING IN GROUP HOME SETTINGS IN VARIOUS PLACES, AND WHEN WE STUDY THOSE PEOPLE, ARE WE TRULY STUDYING A REPRESENTATIVE SAMPLE OF ALL AUTISTIC PEOPLE BECAUSE MOST AUTISTIC PEOPLE ACCORDING TO THE EVIDENCE ARE NOT IN THOSE SETTINGS, AND ARE THEY NOT IN THE SETTINGS JUST BY CHANCE OR BECAUSE THEY DON'T HAVE SUFFICIENT PROBLEMS TO PUT THEM THERE? I GUESS I'M CONCERNED THAT THERE ARE SEVERAL STRIKINGLY DIFFERENT INTERPRETATIONS OF THIS. AND I THINK THE ONLY WAY WE CAN ANSWER IT IS BY A LARGE SCALE ADULT PREVALENCE SURVEY, AND I THINK THAT IT IS REALLY VITAL TO DO THAT. I WOULD LIKE TO FIND THAT OUTCOMES FOR AUTISTIC ADULTS ARE TRULY MUCH BETTER, AND THAT STUDIES LIKE CROHN AND THE AUTISTICA STUDY ON SUICIDE ONLY APPLY TO A SMALL PORTION OF THE YOU A IT TIS TICK AUTISTIC POPULATION. BUT I KNOW THAT THAT MIGHT WELL NOT BE TRUE, THEY MIGHT WELL APPLY TO ALL AUTISTIC PEOPLE, AND IF SO, WE ARE SERIOUSLY UNDERSERVING THE POPULATION AND SUCH A SURVEY WOULD PROVIDE A POWERFUL TOOL WITH WHICH TO EMPOWER OUR LEGISLATORS TO ADDRESS THE SITUATION. SO IN MY PAPER, I CALLED ON OUR PUBLIC HEALTH AGENCIES TO CONSIDER ADDRESSING THIS PROBLEM BY CONDUCTING A LARGE SCALE STUDY OF THAT SORT IN THE UNITED STATES. NOW JOSH AND A I HAVE AND I HAVE ALREADY TALKED ABOUT THIS AND HE'S DESCRIBED SOME ALTERNATIVES AND SOME IDEAS ON THAT WHICH HE MIGHT OFFER HERE. HE ALSO POINTED OUT THAT ONE COULD INTERPRET THE FACT THAT MOST AUTISTIC ADULTS ARE UNIDENTIFIED AS TO SAY THAT WE DON'T NEED SERVICES FOR THOSE PEOPLE. AND THAT IS ONE VERY HOPEFUL OUTCOME, BUT I DON'T THINK AT THIS MOMENT THERE IS ANY EVIDENCE THAT SAYS WE'RE PROVIDING TOO MANY AUTISM SERVICES AND THAT MEANS WE CAN CUT BACK ON THEM. I THINK RATHER WHAT IT MEANS IS THAT IF WE ARE PROVIDING THESE BILLIONS OF DOLLARS OF AUTISM SERVICES IN SCHOOLS, IF WE WERE TO EXPAND THE LEVEL OF AUTISM SERVICE WE PROVIDE IN SCHOOLS IT ALSO DELIVER THOSE SERVICES TO ADULTS, WE WOULD BE TALKING ABOUT HUNDREDS OF BILLIONS OF DOLLARS THAT IS NOT GIVEN TO ADULTS TODAY. SO CAN WE MAKE A CASE FOR SIGNIFICANTLY MORE? IS THE STATUS QUO ENOUGH? THAT'S A DISCUSSION BUT I DON'T THINK THE DISCUSSION IS COULD WE DIMINISH THE SERVICES. AND I WANT TO MAKE CLEAR THAT MY COMMENTARY WAS NEVER INTENDED TO SUGGEST THAT WE DELIVER TOO MUCH. ALL OF YOU WHO HEAR ME HERE, YOU KNOW I ALWAYS ARGUE THE OPPOSITE. BUT I THINK THAT THIS IS A THING THAT WE REALLY -- WE NEED TO REFLECT UPON. I THINK THAT WE'VE HAD SO MANY BLANKET STATEMENTS, 80% UNEMPLOYMENT, 70% DIVORCED, ALL THESE PORTRAYALS OF FAILURE. AND THE FACT IS, WE HAVE NO IDEA IF THOSE THINGS ARE TRUE. SO THAT WAS WHAT I WANTED TO BRING UP. PERHAPS WHAT WE COULD DO IS WE COULD CIRCULATE A LINK OR SOMETHING LIKE THAT TO THE PAPER TO GO WITH THIS. SO THAT'S -- >> SURE, WE COULD ADD A LINK TO THAT PAPER TO THE WEBSITE. WE COULD EVEN DO THAT DURING THE MEETING HERE TODAY AS A MEETING MATERIAL. >> LET'S SEE IF WE CAN'T GET THAT UP SO THAT PEOPLE CAN LOOK AT IT AND IF YOU HAVE TIME TO LOOK AT IT THROUGH THE DAY, WE CAN RE-ENTER THIS DISCUSSION IF THERE'S TIME TOWARDS THE END OF THE DAY DURING THE ROUND ROBIN. I WANT TO COMMEND YOU, JOHN, FOR THE PAPER WHICH I'M NOT SURE THAT I READ A FINAL VERSION OF BUT I READ THE VERSION THAT YOU HAD SENT ME EARLIER THIS YEAR -- >> YEAH, I JUST CHANGED -- I ADDED A PARAGRAPH AT THE END AFTER YOU AND I TALKED, BUT YOU READ THE WHOLE THING. >> SO I'M LOOKING FORWARD TO READING THAT PARAGRAPH AS WELL. FROM AN NIMH PERSPECTIVE, AS WE WERE DISCUSSING EARLIER THE ISSUES OF ACCOUNTING FOR THE PREVALENCE OF AUTISM IN CHILDHOOD ARE COMPLICATED EVEN THOUGH WE HAVE ALL THESE DIFFERENT MECHANISMS TO ASCERTAN IT, BE IT THROUGH MEDICAID, BE IT THROUGH SCHOOL RECORDS, BE IT THROUGH THE SURVEY, AND I THINK THE ISSUES OF DOING SO IN THE ADULT POPULATION ARE EVEN MORE CHALLENGING BECAUSE CARE WHERE DELIVERED IS GOING TO BE MORE FRAGMENTED AND BECAUSE AS YOU POINT OUT QUITE ELOQUENTLY IN YOUR ARTICLE, PEOPLE AREN'T GETTING CARE, AND THAT MAKES ASSESSING THE NEED FOR CARE EVEN MORE CHALLENGING. THAT DOESN'T MEAN THAT WE SHOULDN'T DO IT. IT AT THE NIMH, OUR CONCERNS ARE AS YOU ALL KNOW BUILDING OFF OF EARLIER RECOMMENDATIONS FROM THIS COMMITTEE, TRYING TO FIGURE OUT WHAT THE BEST WAY TO DELIVER SERVICES ARE TO ADULTS, AS OPPOSED TO TRYING TO QUANTIFY THE NEED, WHICH IS MORE TYPICALLY DONE BY OTHER FEDERAL AGENCIES. BUT -- AND I'LL COME BACK -- MAKE ONE MORE COMMENT WHICH IS I'LL COME BACK TO THAT COMMENT I MADE EARLIER AGAIN ON THE PREVALENCE ESTIMATES THAT THE CDC PRESENTED EARLIER TODAY, WHICH IS YOU REALLY DO NEED TO THINK ABOUT THE QUESTION THAT YOU WANT TO ASK WHEN YOU'RE TRYING TO FIGURE OUT WHAT STUDY, YOU KNOW, YOU WOULD LIKE TO HAVE HAPPEN OR THAT THIS COMMITTEE WOULD LIKE TO RECOMMEND. IN MY OPINION, AND IT IS JUST MY OPINION AND I DON'T EVEN MEAN TO REPRESENT THE NIMH WHEN I'M SAYING THIS BECAUSE I DON'T THINK WE'VE THOUGHT THROUGH IT YET TO FORMULATE AN OFFICIAL OPINION. IN MY OPINION, IT'S LESS ABOUT KNOWING HOW MANY PEOPLE HAVE AUTISM AND I KNOW THAT'S NOT WHAT YOU'RE SUGGESTING IN YOUR EDITORIAL BUT RATHER WHAT ARE THE UNMT NEEDS OF ADULTS WITH AUTISM AND THAT'S GOING TO CHANGE WHAT KIND OF A STUDY YOU'RE GOING TO WANT TO PERFORM. BUT THOSE ARE JUST THE COMMENTS THAT I HAVE OFF THE CUFF. NINA, YOU WANTED TO MAKE A COMMENT AND THEN OTHERS AS WELL, IF YOU JUST RAISE YOUR HAND, I'LL WRITE DOWN A LIST WE. HAVE TIME TO DISCUSS THIS BEFORE LUNCH. >> JUST A BRIEF COMMENT. I WOULD -- I WONDER ABOUT THE WISDOM OF THINKING AS WE VERY OFTEN DO, I THINK ALL OF US DO, OF ADULTS AND CHILDREN AS DISCRETE POPULATIONS BECAUSE I THINK OFTEN ABOUT WHETHER, IN FACT -- AND I'M TOTALLYENCUMBERRED BY DATA IN THIS ARENA, I THINK OFTEN ABOUT WHETHER, IN FACT, THE APPROPRIATE AND TIMELY AND COMPLETE PROVISION OF SERVICES TO CHILDREN GIVES AT LEAST SOME FRACTION OF THEM THE STRATEGIES THAT THEY NEED TO THEN NOT IN FACT NEED A LARGE NUMBER OF SERVICES WHEN THEY BECOME ADULTS. I HAVE NO IDEA WHETHER THAT'S THE CASE OR NOT. I MEAN, IT IS THE HOPE OF THOSE WHO PROVIDE SERVICES IN CHILDHOOD THAT WE EQUIP THOSE CHILDREN FOR ADULTHOOD IN A WAY THAT THEY WOULDN'T OTHERWISE BE EQUIPPED, BUT I HAVE NO IDEA IF THAT'S THE CASE OR NOT. >> IN MY PAPER AND IN OTHER WRITINGS, I HAVE RAISED THE ISSUE OF THIS IDEA OF EMERGENCE FROM DISABILITY. AND SO FOR EXAMPLE, THERE ARE A NUMBER OF AUTISTIC ADULTS, MYSELF INCLUDED, WHERE WE SEE THAT OVER PERIODS OF 10 AND 20 YEARS, OUR ADOF SCORES MAY REMAIN THE SAME BUT OUR PRACTICAL ABILITY TO FUNCTION IN THE SOCIETY IS TRANSFORMED DRAMATICALLY FOR THE BETTER. WE HEAR PRESENTATIONS HERE AND I KNOW SOME OF YOU, ALISON, FOR EXAMPLE, AMY LUTZ WHO CAME AND PRESENTED TO US YOU, HAVE CHILDREN WHOSE TRAJECTORY DOES NOT APPEAR TO GET BETTER AND WE HAVE HAD PAPERS PRESENTING THAT IDEA. THERE SEEMS TO BE A POINT THAT'S MAYBE NOT SOLIDLY DEFINED WHERE OUTCOMES DO NOT IMPROVE AS THE PERSON GETS OLDER AND THEN ABOVE THAT, THEY DO. I THINK THAT THAT SPEAKS TO THE HEART OF A CONCERNING DIVIDE THAT'S EMERGING IN THE AUTISM COMMUNITY. THIS YEAR WE HAVE HAD -- LAST YEAR WE'VE HAD THE EMERGENCE OF GROUPS TALKING ABOUT WHAT THEY'RE CALLING SEVERE AUTISM, AND A WE HAVE A CONFLICT SEEMINGLY SET UP BY WHAT IS DESCRIBED AS A NEURODIVERSITY FACTION. I DON'T THINK WE SHOULD SEE THAT AS A CONFLICT. I SUGGEST THAT WHEN YOU THINK ABOUT THIS, AND WHAT HAPPENS WITH THESE ADULT TRAJECTORIES, WE RECOGNIZE THAT THE AUTISM SPECTRUM IS A VERY BROAD ONE. THERE IS NOT ONLY THE POOL OF PEOPLE WHO ARE SUFFICIENT LE AFFECTED TO RISE TO THE LEVEL OF DIAGNOSIS ON AN A ADOS, THERE IS THIS BROAD AUTISM PHENOTYPE WITH SOME TRAITS BUT NOT RISING TO A DIAGNOSTIC THRESHOLD BEYOND THAT. THAT'S A VERY LARGE POOL OF PEOPLE. SOME PEOPLE ARE SO IMPACTED THAT THEY WOULD HAVE A VERY HIGH ADOS SCORE AND THEY WOULD NOT HAVE IMPROVEMENT IN AGING AND THEY WOULD HAVE A VERY LIMITED ABILITY TO CARE FOR THEMSELVES. ALL OF THAT REPRESENTS, AS LOUIS WOULD SAY, IT REPRESENTS INHERITED NATURALLY OCCURRING NEUROLOGICAL DIVERSITY. NOW THERE ARE MULTIPLE OTHER PATHWAYS INTO AUTISM AND I DON'T WANT TO DISMISS THOSE. PEOPLE COULD BE INJURED BY ENVIRONMENTAL EXPOSURES, BY PHYSICAL INJURIES, BY DISEASE, BY DISEASE IN THEIR MOTHERS, THOSE ARE ABSOLUTELY REAL, BUT IT IS ALSO FAIR TO SAY THAT PEOPLE ARE NATURALLY BORN WITH ALL DEGREES OF EXCEPTIONALITY IN DISABILITY, AND I THINK WE SHOULD CONSIDER THAT THERE IS A POINT WHERE WHAT WE MIGHT DESCRIBE AS DIVERSITY SHADES INTO PATHOLOGY. IT'S NO LESS DIVERSITY, BUT WE GET TO A POINT WHERE A RATIONAL PERSON WOULD NOT LOOK AT THAT PARTICULAR EXAMPLE AND SAY WELL, I'M JUST GOING TO CALL THIS HEALTHY DIVERSITY, A RATIONAL PERSON WOULD LOOK AT THAT AND SAY, I WANT HELP, I WANT MEDICAL SCIENCE TO HELP ME MAKE THIS BETTER. AND I GUESS I WOULD LIKE TO SEE US BE ABLE TO COME TOGETHER AS ONE COMMUNITY AND PURSUE A COMMON GOAL. I THINK THAT WE CAN RECOGNIZE THAT THERE MAY BE THE SAME BIOLOGICAL BASIS FOR A PERSON WHO IS SEEMINGLY MUCH MORE IMPAIRED THAN, FOR EXAMPLE, MYSELF, BUT I THINK THAT WE NEED DATA ON ADULT OUTCOMES TO KNOW WHERE THIS GOES. IF, FOR EXAMPLE -- >> JOHN, I'M GOING TO INTERRUPT YOU, WE'RE PUSHING UP AGAINST LUNCH AND YOU'RE VERY ELOQUENT BUT I THINK YOU MADE YOUR POINT AND I KNOW THAT SAM WOULD LIKE TO MAKE ONE COMMENT OR QUESTION. >> ALL RIGHT. >> I'LL MAKE IT REALLY FAST. AND I'M SORRY THAT I MISSED MUCH OF THIS DISCUSSION. I THINK THAT A LOT OF THE TIME -- I WANTED TO RESPOND TO THE CONCERN ABOUT, YOU KNOW, WHETHER OR NOT SERVICES EARLY ELIMINATE THE NEED FOR SERVICES LATER, AND I THINK THAT FROM THE PERSPECTIVE OF PEOPLE WHO USE SERVICES, THAT CAN SOMETIMES BE THE WRONG QUESTION. SO I HAVE FRIENDS WHO -- COLLEAGUES WHO USE SERVICES BUT THEY'RE WORKING IN THE COMMUNITY. NOW, IF THEY STOPPED WORKING AND THEY SPENT EVERY WAKING HOUR TRYING TO TAKE CARE OF THEIR BASIC NEEDS, THEY MIGHT NOT NEED AS MANY SERVICES, BUT THE QUESTION IS, WHAT ARE THEIR OUTCOMES. SO MANY OF US, EVEN THOUGH WE MIGHT NOT NEED SERVICES IN ORDER TO FULFILL THE BASIC FUNCTIONS OF LIFE, WE MIGHT STILL NEED SERVICES IN ORDER TO ACTUALLY LIVE IN THE COMMUNITY. AND THAT GOES FOR HOURS OF SERVICES TOO. SOME PEOPLE MIGHT BE ABLE TO SCRAPE BY ON TWO HOURS OF SERVICES A DAY, BUT THEY'RE NOT HAVING FULFILLING LIVES AND THEY WOULD BE ABLE TO DO MUCH MORE WITH MORE SERVICES. SO A LOT OF US, YOU KNOW, ARE GOING TO BE THINKING ABOUT THOSE OUTCOMES MORE. AND SAME WITH AS JOHN POINTED OUT, YOU KNOW, MANY OF US MIGHT DEVELOP COMPETENCIES OVER THE COURSE OF OUR LIVES BUT I DON'T KNOW THAT MANY AUTISTIC PEOPLE REALLY ON ANY PART OF THE SPECTRUM WHO ARE LIKE, YOU KNOW, MY GOAL IS TO GET A BETTER ADOS SCORE, RIGHT? YOU KNOW, LIKE, THAT MIGHT BE A METRIC THAT APPROXIMATES SOME COMPETENCIES BUT THE THINGS THAT WE REALLY NEED TO BE FOCUSING ON ARE, LIKE, DO WE HAVE FRIENDS? DO WE HAVE, YOU KNOW, A RICH LIFE? AND WHAT ARE THE THINGS THAT MAKE A RICH LIFE? SO THAT WAS JUST WHAT I WAS GOING TO SAY. >> THANK YOU, SAM, AND THANK YOU, JOHN. LET ME JUST POINT OUT THAT I REALLY APPRECIATE THIS DISCUSSION. WE WOULD HAVE LIKED TO HAVE BEEN ABLE TO HAVE A FULLER DISCUSSION OF THIS ISSUE PRIOR TO THE CLOISING OF CLOSING OF THE WINDOW OF THIS PARTICULAR IACC GROUP, SEPTEMBER 30TH, BUT UNFORTUNATELY WE JUST DON'T HAVE TIME IN THE SCHEDULE WITH ALL THE OTHER ISSUES AND THE REPORTS THAT WE'RE GOING TO NEED TO PUT OUT FROM THE WORK GROUPS, ET CETERA, SO WE'RE REALLY PLEASED TO TO BE ABLE TO HAVE THIS MINI DISCUSSION, I'M TBLAD WE WERE ABLE GLAD WE WERE ABLE TO FIT IT IN. AND WE HOPE TO BE ABLE TO AND EXPECT TO BE ABLE TO CONTINUE THE IACC PAST SEPTEMBER 30TH WITH A A RENEWAL OF THE LAW AND SO WE'LL LOOK TO PUTTING DISCUSSION ON ADULT OUTCOMES AND SERVICE USE LATER ON. THE OTHER THINKING ABOUT THIS, WE HAD SEVERAL OF THESE DISCUSSIONS A FEW YEARS AGO AS I SAID OH THAT LED TO A LOT OF RESEARCH BEING RESEARCH BEING INITIATED FUNDED BY THE NIH AND WE'RE HOPEFUL THAT IN THE COMING YEAR OR, SO WE'LL START TO SEE THE OUTPUT FROM THOSE DATA, FROM THOSE STUDIES, SO WE'RE ABLE TO HAVE A DISCUSSION THAT'S INFORMED BY A LITTLE BIT MORE DATA, PROBABLY NOT YET AS MUCH AS WE NEED, AS JOHN AS YOU'VE THOUGHTFULLY POINTED OUT IN YOUR COMMENTARY. >> THANKS, JOSH AND SUSAN FOR WORKING THAT IN. I DIDN'T ACTUALLY EXPECT THAT AT ALL. >> GLAD THAT WORKED OUT. AND THIS AFTERNOON WHEN WE HEAR FROM THE NATIONAL AUTISM COORDINATOR, SHE'S GOING TO BE TALKING A LITTLE BIT ABOUT OUTCOMES FOR TRANSITION AGE YOUTH WHICH RELATES -- YOU KNOW, IT'S ON THAT SAME CONTINUE WUM. SO THAT MIGHT BE SOMETHING TO ADD, AND THAT WILL PRECEDE OUR ROUND RO BIB SO ROUND ROBIN SO MAYBE WE'LL HAVE TIME TO COME BACK TO IT AS WELL. NOW I THINK WE CAN HAVE LUNCH. I SEE THAT THE LUNCHES ARE HERE, SO FOR THOSE WHO ORDERED FROM PANERA, YOUR LUNCH IS HERE, AND IN THE AREA IF THERE'S ANYONE HERE WHO'S NOT FAMILIAR, THERE IS A LITTLE SHOPPING CENTER CALLED PIKE AND ROSE THAT HAS A LOT OF LITTLE DIFFERENT EATERIES AND YOU ARE WELCOME TO PICK UP LUNCH THERE, THERE ARE A LOT OF OPTIONS. >> I'M GOING TO START UP AT 1:00 SHARP FOR THE PUBLIC COMMENT SESSION. THANK YOU. WE'RE GOING TO SPEND THE NEXT HOUR HEARING FROM MEMBERS OF THE PUBLIC WHO ARE HERE AND ALSO WHO HAVE SUBMITTED WRITTEN COMMENTS IN ADVANCE AND ALSO LIVE FEEDBACK COMMENTS, AND THEN WE WILL HAVE TIME FOR US TO DISCUSS THESE COMMENTS ACCORDINGLY. I WANT TO START OUT THIS SESSION ACTUALLY, WE HAD ACTUALLY ONLY APPARENTLY ONE COMMENT THROUGH THE LIVE FEEDBACK FEED THIS TIME, BUT SO I THOUGHT I'D SHARE IT WITH YOU BECAUSE I THINK IT'S A GOOD WAY TO START AND IT'S POSITIVE. SO IT'S A COMMENT THAT COMES TO US FROM SOMEONE WHO'S NOT ASSOCIATED WITH NIH. "DANG, SORRY I MISSED THAT BUT DID HEAR THAT JADEN CHANGED THE PEOPLE AROUND HIM AS MUCH AS BEING IN THE REGULAR CLASSROOM CHANGED HIM. I HAD THE SAME EXPERIENCE IN A SEVERE PROFOUND CLASSROOM I WORKED IN. WHEN THE KINDERGARTEN TEACHER INVITED OUR KIDS IN. SHE NORMALIZED SPECIAL NEEDS KIDS FOR HER KINDERGARTEN. BEAUTIFUL. SO I THOUGHT THAT'S A GREAT WAY TO GO AHEAD AND START THE PUBLIC COMMENT SESSION. SUSAN, ARE WE GOING DIRECTLY TO ORAL COMMENTS FIRST? >> YES, WE CAN DO ORAL COMMENTS FIRST. >> OKAY. I DON'T HAVE THE LIST. WE'RE GOING TO START WITH ORAL COMMENTS, WE HAVE TWO INDIVIDUALS HERE TO PRESENT ORAL COMMENTS. FIRST WE HAVE LISA WEDERLIGHT. I HOPE I PRONOUNCED THAT CORRECTLY. AND SHE'S FROM SAFE MINDS. >> THANK YOU. GOOD AFTERNOON. I'M PLEASED TO PRESENT THESE COMMENTS ON BEHAVE OF SAFE MINDS FOR THE IACC APRIL 2019 NEED METEOROLOGISTING. WE'RE GOING FOCUS ON THE RE-AUTHORIZATION OF THE AUTISM CARES ACT. THE BILL DOES NOT PROVIDE AN AMOUNT FOR AUTISM RESEARCH. SAFE MIND SUPPORTS THE IACC RECOMMENDATION TO INCREASE AUTISM RESEARCH FUNDING TO $685 MILLION AS STATED IN THE IACC'S 2016-2017 EXTRA TEE YIK RESEARCH PLAN. DATA FROM PAGE 102 OF THE STRATEGIC PLAN SHOWS RESEARCH SPENDING TO BE FLAT SINCE 2012, DESPITE AUTISM PREVALENCE HAVING INCREASED 50% FROM 1 IN 88 TO 1 IN 59. UNLESS THE AUTHORIZING BILL ASKS FOR AN INCREASE IN RESEARCH FUNDING A HIGHER AMOUNT IS UNLIKELY TO BE APPROPRIATED. HAVING FLAT SPENDING ON AUTISM RESEARCH IS CLEARLY INADEQUATE GIVEN THE RISE IN PREVALENCE AND ITS ASSOCIATED COSTS. AS THE FEDERAL GOVERNMENT'S GOVERNMENT'S ADVISORY COMMITTEE ON AUTISM, THE IACC SHOULD RECOMMEND THAT RESEARCH FUNDS BE DOUBLED IN THE AUTISM CARES ACT. THE AUTISM CARES ACT SHOULD DIRECT THE CDC TO ENHANCE ITS ADD MSM EPIDEMIOLOGY RESEARCH METHODS SO A MORE ACCURATE COUNT OF ADULTS AND CHILDREN WITH AUTISM ACROSS THE U.S. CAN BE ESTIMATED. IMPROVED METHODS INCLUDE ACTIVE CASE FINDING TO RULE OUT -- ACTUALLY TO RULE IN OR OUT AUTISM CASES, A NATIONALLY REPRESENTATIVE SAMPLE, DATABASED ON COMPREHENSIVE MEDICAL AND MEDICAL RECORDS AT ALL SITES AND CONSIST IT TENT SITES AND CASE FINDING METHODS OVER TIME TO ALLOW FOR TREND ANALYSIS. NOT KNOWING HOW MANY PEOPLE ARE DIAGNOSED WITH AUTISM AND THEIR ASSOCIATED FEATURES MAKES APPROPRIATE RESOURCE ALLOCATION AND RELATED PROGRAMS ACROSS THE LIFESPAN DIFFICULT IF NOT IMPOSSIBLE. YET THE CDC HAS DRASTICALLY CUT FUNDING FOR THE CURRENT DATA COLLECTION SIGH CAL, HAS CHANGED SITES FOR DATA COLLECTION AND HAS CHANGED THE CASE I'D IF FIX METHODS. AS THE FEDERAL GOVERNMENT'S ADVISORY COMMITTEE ON AUTISM, THE IACC SHOULD RECOMMEND THAT THE ADDM BUDGET BE RESTORED AND THAT THE AUTISM CARES ACT DIRECTS TO APPROVE THE METHODOLOGY. TO CLEARLY DEFINE POLICY PRIORITIES AND RESULT IN FINDINGS THAT ARE RELEVANT IT TO THE NEEDS OF PEOPLE WITH AUTISM TODAY AND IN THE FUTURE. BY WAY OF EXAMPLE, WHAT POLICY CHANGES WILL HAVE OCCURRED AS A RESULT OF THE RESEARCH AND WORKSHOP DONE ONCO-OCCURRING HEALTH CONDITIONS WITH AUTISM? WHAT OUTCOMES CAN WE EXPECT? HOW CAN WE INCREASE THE NUMBER OF APPROPRIATE YOU A IT TISM DIAGNOSES AND DECREASE THE AGE OF DIAGNOSIS AMONG ALL ETHNICITIES AND SOCIOECONOMIC GROUPS? HOW CAN WE ENSURE THE TIMELY INITIATION OF TREATMENTS AND INTERVENTIONS? HOW DO WE IMPROVE LINK ANLS TO WELL TRAINED AND APPROPRIATE COMPENSATED ME MEDALLION CAL, THERAPEUTIC AND EDUCATIONAL PROFESSIONALS? HOW DO WE IDENTIFY BEST PRACTICES FOR EDUCATIONAL, VOCATIONAL AND MEDICAL TREATMENTS FOR PEOPLE WITH AUTISM? THE INCREASED RESEARCH FUNDING SHOULD SUPPORT A BALANCED APPROACH TO FINDING THE GENETIC, ENVIRONMENTAL AND EPIGENETIC CAUSES OF AUTISM AND HOW SOME OF THE SYMPTOMS OF AUTISM MAY REPRESENT PHYSICAL ISSUES THAT MAY BE ADDRESSED AND TREATED MEDICALLY. AS A ME MECHANISM TO LEVERAGE RESEARCH INTO POLICY GOALS, SAFE MINDS SUPPORTS THE CREATION OF AN ANNUAL NATIONAL AUTISM STRATEGY WHICH SETS PRIORITIES FOR THE FEDERAL AUTISM RESPONSE. IT SHOULD CONTAIN MEASURABLE GOALS, OBJECTIVES AND OUTCOMES AND HOLD THE FEDERAL GOVERNMENT ACCOUNTABLE FOR FINDING THE CAUSES OF THE RISE IN AUTISM PREVALENCE WITH IMPROVED METHODOLOGY AT THE CDC. IT SHOULD IDENTIFY EFFECTIVE WAYS TO ADDRESS THE NEEDS FTD AUTISM COMMUNITY-BASED ON RESEARCH AND COMMUNITY OUTREACH, THAT RESULT IN SIGNIFICANT IMPROVEMENTS IN THE LIVES OF PEOPLE WITH AUTISM AND THEIR CAREGIVERS. STRATEGY'S GOAL SHOULD REACH ACROSS THE JURISDICTION OF MANY FEDERAL AGENCIES INCLUDING HHS OF, EDUCATION, HUD, LABOR, HOMELAND SECURITY AMONG OTHERS. RECOGNIZING THAT THE PART-TIME FEDERAL AUTISM COORDINATOR POSITION CURRENTLY HOUSED WITHIN HHS WOULD NOT HAVE THE TIME OR FOCUS TO LEAD THE STRATEGIC EFFORT, SAFE MINDS SUPPORT THE APPOINTMENT OF A FULL TIME FEDERAL AUTISM COORDINATOR IN THE EXECUTIVE OFFICE OF THE PRESIDENT. AS RECOMMENDED BY CANDIDATE BARACK OBAMA IN 2008. APPOINTING A FULL TIME FEDERAL AUTISM COORDINATOR WHO IS EXPERIENCED AND SUCCESSFUL IN FEDERAL INTERAGENCY COORDINATION WOULD ENSURE THAT AUTISM GETS THE PRIORITY IT DESERVES IN THE FEDERAL GOVERNMENT WHILE ENHANCING OVERSIGHT AND ACCOUNTABILITY OF THE FEDERAL RESPONSE TO THE AUTISM CRISIS. THIS POINT PERSON ON AUTISM WOULD BE RESPONSIBLE PRESENTING THE ANNUAL NATIONAL AUTISM STRATEGY TO CONGRESS AND TO THE PRESIDENT. HE OR SHE WOULD WORK TO IDENTIFY AND REMOVE BUREAUCRATIC OBSTACLES AND COORDINATE THE WORK OF EACH OF THE EXECUTIVE OFFICE AGENCIES AS THEY RELATE TO AUTISM, INCLUDING HHS, EDUCATION, LABOR, HUD, JUSTICE, HOMELAND SECURITY, DSM DOD AMONG OTHERS. AS THE FEDERAL GOVERNMENT'S ADVISORY COMMITTEE ON AUTISM, THE IACC SHOULD RECOMMEND THAT THE AUTISM CARES ACT INCLUDE A PROVISION FOR THE ESTABLISHMENT OF A FULL TIME FEDERAL AUTISM COORDINATOR IN THE EXECUTIVE OFFICE OF THE PRESIDENT, WHO WOULD BE CHARGED WITH CREATING NATIONAL AUTISM STRATEGY. IT IS DIFFICULT TO IMAGINE THAT TAKING A STATUS QUO APPROACH TO ADDRESSING AUTISM AS WE HAVE SINCE 2006 AND WHICH IS REFLECTED IN THE 2019 AUTISM CARES BILLS WILL RESULT IN DIFFERENT OUTCOMES THAN WE HAVE ALREADY SEEN. WE ARE HOPEFUL THAT THESE PROPOSED CHANGES TO THE AUTISM CARES ACT WILL BE GIVEN EVERY CONSIDERATION BY THE IACC. THANK YOU. >> THANK YOU VERY MUCH. THERE'S ANY AT AT THE SIRE FOR MEDIA COMMENT OR QUESTIONS, WE'LL RETURN TO A LARGER DISCUSSION. JOHN? >> WHILE SHE'S ALREADY STEPPED DOWN, BUT IT SOUNDS TO ME LIKE -- IT SOUNDS TO ME LIKE YOU KNOW THAT WE HAVE AUTISM COORDINATORS AND STAFF DOING THESE THINGS, AND ASKING FOR A -- IT SOUNDS TO ME LIKE YOU'RE ASKING FOR A HIGHER LEVEL VERSION OF WHAT WE HAVE IN YOU ALL NOW? >> WHAT WE'RE ASKING FOR IS THAT THERE IS ONE PERSON WITHIN THE FEDERAL GOVERNMENT WHO'S RESPONSIBLE FOR WORKING WITH THESE COORDINATORS TO MAKE SURE THERE'S NO DUPLICATION OF EFFORT AND TO LEVERAGE RESOURCES TO COORDINATE WHAT EVERYONE'S DOING. THERE IS A PRECEDENT FOR THAT IN THE OFFICE OF NATIONAL DRUG CONTROL POLICY AS WELL AS OTHER ORGANIZATIONS. IT WOULDN'T BE ONLY WITHIN ONE ORGANIZATION, IT WOULD BE SOMEONE WHO WOULD CALL PEOPLE TOGETHER AND SOMEONE WHO WOULD GO TO THE AGENCIES TO COLLABORAE WITH THEM. >> THANK YOU. WE'LL MOVE ON TO THE NEXT COMMENTER. WE HAVE DR. JOHN MARTIN WHO IS COMING TO GIVE SOME ORAL COMMENTS. THANK YOU, DR. MARTIN. >> GOOD AFTERNOON. I'M A PATHOLOGIST WITH BOARDS IN ANATOMIC AND IN CLINICAL PATHOLOGY, SUBSPECIALTY TRAINING IN IMMUNOPATHOLOGY, AND IN MEDICAL MICROBIOLOGY. I HAVE WORKED AT THE NATIONAL CANCER INSTITUTE AND ALSO THE NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES. FROM 1977 TO 1980, I WAS THE HEAD OF THE VIRAL ONCOLOGY LABORATORY OF THE FDA DIVISION OF VIROLOGY. NOW I HAVE DESCRIBED VIRUSES WHICH DIFFER FROM THE VIRUSES FROM WHICH THEY WERE DERIVED IN THAT THEY NO LONGER EVOKE INFLAMMATION. THIS IS BECAUSE OF THE DELETION OR MUTATION OF THE GENE CODING FOR THE RELATIVELY FEW VIRUS COMPONENTS THAT ARE NORMALLY TARGETED BY THE CELLULAR IMMUNE SYSTEM. I REFER TO THIS IMMUNE EVASION MECHANISM AS STEALTH ADAPTATION. STEALTH ADAPTED VIRUSES WERE DESCRIBED IN A MAJOR PATHOLOGY JOURNAL IN 1994, AND REPORTED IN CHILDREN WITH AUTISM IN 1995. NOW THIS RESEARCH MET WITH RESISTANCE FROM PUBLIC HEALTH OFFICIALS WHEN IT BECAME CLEAR THAT CERTAIN STEALTH ADAPTED VIRUSES CAME FROM OR AROSE FROM CYTOMEGLOVIRUS OF AFRICAN GREEN MONKEYS. KIDNEY CELLS FROM CYTOMEGLOVIRUS AFFECTED OF AFRICAN GREEN MONKEYS WERE ROUTINELY USED FOR LIVE POLIO VACCINES. DNA FROM MONKEY SIGH IT TOE MEGLOVIRUS IS DETECTABLE IN SEVERAL PREVIOUSLY LICENSED POLIO VACCINES. WHEN HUMANS ARE INFECTED, THE VIRUSES CAN THEN PASS HUMAN TO HUMAN, AND CAN ALSO BE TRANSMITTED TO THE UNBORN CHILD DURING PREGNANCY. STEALTH ADAPTED VIRUSES INDUCE SEVERE BEHAVIORAL ILLNESSES WHEN INOCULATED INTO CATS. THE ANIMALS CLINICALLY RECOVER AFTER SEVERAL WEEKS OF SEVERE ILLNESS, EVEN THOUGH THERE'S NO INFLAMMATION. THEREFORE, ALTHOUGH THE CELLULAR IMMUNE SYSTEM FAILS TO EFFECTIVELY RECOGNIZE THESE VIRUSES, THEY CAN STILL BE SUPPRESSED. THE MECHANISM OF SUPPRESSION IS THROUGH THE ALTERNATIVE CELLULAR ENERGY, OR ACE PATHWAY. THIS SOURCE OF CELLULAR ENERGY IS DIFFERENT FROM THE CELLULAR ENERGY OBTAINED FROM THE CALORIES IN FOOD. IT'S EXPRESSED AS AN ADDED DYNAMIC OR KINETIC QUALITY OF THE BODY'S FLUIDS. THE ACE PATHWAY CAN BE ENHANCED IN HUMANS, USING VARIOUS METHODS METHODS. THAT PUBLICATION THAT WAS DISTRIBUTED BEFORE MY TALK IS AN EXAMPLE OF A PROTOCOL THAT ACHIEVES SIGNIFICANT CLINICAL BENEFITS IN CHILDREN WITH AUTISM. CONVERSELY, BOOSTING THE IMMUNE SYSTEM WITH IMMUNIZATIONS CAN TRIGGER A FRESH IMMUNITY OR FRESH IMMUNITY AGAINST SOME OF THE RESIDUAL VIRAL COMPONENTS THAT ARE NOT NORMALLY RESPONDED TO BY THE CELLULAR IMMUNE SYSTEM. THIS CAN LEAD TO FURTHER BRAIN DAMAGE. SYMPTOMATIC STEALTH VIRUS INFECTED CHILDREN SHOULD NOT BE INCLUDED IN THE CURRENT RATHER INTENSE VACCINE SCHEDULE. AS MEMBERS OF THE IACC, THROUGH YOUR RESPECTIVE INSTITUTIONS, YOU HAVE THE OPPORTUNITY TO CULTURE STEALTH ADAPTED VIRUSES AND TO IMPLEMENT ANY VALUE ACE PATHWAY BASED THERAPIES IN CHILDREN WITH AUTISM. I WOULD BE PLEASED TO ASSIST YOU IN THESE ENDEAVORS. THANK YOU. >> THANK YOU, DR. MARTIN. ARE THERE ANY COMMENTS OR QUESTIONS OF IMMEDIATE IMPORT FROM THE COMMITTEE BEFORE WE GO INTO THE WRITTEN PUBLIC COMMENTS? LEWIS? LOU LOUIS? >> I JUST WANTED TO ASK YOU, HOW DO THESE VIRUSES EVADE THE INNATE IMMUNE SYSTEM, WHICH HAS COMPONENTS DESIGNED TO DETECT CYTOPLASMIC DNA AND CYTOPLASMIC DOUBLE STRANDED RNA? >> BASICALLY THE VIRUSES, AS I SAY, WERE INOCULATED INTO ANIMAL AND CULTURED FROM PATIENTS. THERE'S NO INFLAMMATION TO BE SEEN IN THE TISSUES. SO TO ASK WHY THE INNATE IMMUNE SYSTEM WHICH TOO PROBABLY HAS ITS OWN LIMITATIONS, BUT THE VIRUSES GO INTO ANIMALS AND THERE IS NO INFLAMMATION. >> HOW ARE THESE VIRUS -- WHAT ARE THE CHARACTERISTICS OF THESE VIRUSES? DNA, RNA, WHAT -- >> AGAIN, THE BEST CHARACTERIZED STEALTH ADAPTED VIRUS IS A DERIVATIVE OF AN AFRICAN GREEN MONKEY SIMEON CYTOMEGLOVIRUS. WHAT IS NOT GENERALLY UNDERSTOOD IS THAT WITH EVEN LARGE VIRUSES LIKE CYTOMEGLOVIRUS, RELATIVELY FEW COMPONENTS ARE TARGETED BY THE CELLULAR IMMUNE SYSTEM. SPECIFICALLY, 90%, 90% OF THE CYTOTOXIC T-CELL RESPONSE AGAINST CYTOMEGLOVIRUS TARGET ONLY THREE COMPONENTS. SO IT'S RELATIVELY EASY FOR A VIRUS TO HAVE THREE COMPONENTS DELETED OR MUTATED AND WITH OTHER ADAPTATIONS CAN CONTINUE TO REPLICATE AND INDUCE CELLULAR DAMAGE. THE CELLULAR IMMUNE RESPONSE WILL NOT THE RESPOND IF THOSE COMPONENTS ARE NOT THERE, AND I PRESUME BY SELECTION, THE INNATE IMMUNITY IS ALSO NOT EFFECTIVE BECAUSE THE VIRUSES ARE INFECTIOUS BETWEEN INDIVIDUALS, AND THE VIRUSES WHEN INOCULATED INTO ANIMALS, AS I MENTIONED, CAN INDUCE DISEASE. >> THANK YOU, DR. MARTIN. ARE THERE OTHER QUESTIONS? OKAY. LET'S PROCEED TO THE WRITTEN COMMENTS. I BELIEVE WE'RE GOING TO HAVE A PRESENTATION FROM ONI CELESTIN IN THE OFFICE OF AUTISM RESEARCH COORDINATION HERE AT NIH. ONI? >> GOOD AFTERNOON. SINCE THE JANUARY FULL COMMITTEE MEETING, THE IACC HAS RECEIVED WRITTEN PUBLIC COMMENTS FROM 28 COMMENTERS. FOR THE PURPOSES OF THIS PRESENTATION, WE'VE ORGANIZED THESE COMMENTS INTO FOUR BROAD TOPICS. THE COMMITTEE HAS BEEN PROVIDED THE COMMENTS IN FULL, BUT THEY WILL BE SUMMARIZED BRIEFLY HERE. THE FIRST TOPIC IS ASSISTIVE TECHNOLOGIES AND COMMUNICATION SUPPORTS. THERE WERE 18 COMMENTS RECEIVED ON THIS TOPIC. THE COMMITTEE RECEIVED 14 INDIVIDUAL COMMENTS FROM DR. SANDRA MCCLENNAN, DR. CLARISSA CRIPKEY, MS. DARLENE HANSON, MS. SHANTELL KIRA, MS. JENNIFER BINDER LE PAPERS MS. C.J.SHILO, MS. ALISON THURMAN, MS. KAMI BURKEOW, MR. DAVE MON, MS. TRACY LITANZE, MS. ELIZABETH VOSILAR, MS. MARY ANNE WELLS, MS. CHRISTINE MC KEE. AND CASEY WOOD FIELD FOR HIGHLIGHTING ASSISTIVE TECHNOLOGIES AND AK ITTIVE PARTICIPATION AND THEIR RECENT WORLD AUTISM AWARENESS DAY EVENT. THEY REQUEST THAT THE IACC FOCUS ON THESE ISSUES AT A FUTURE MEETING AND INVITE NON-VERBAL AUTISTIC PEOPLE TO PRESENT. THEY HOPE THAT CALLING ATTENTION TO THE NEEDS OF THIS POPULATION WILL RESULT IN GREATER SUPPORT FOR AND UNDERSTANDING OF ALTERNATIVE COMMUNICATION METHODS. MR. HARI STRINOVASIN WROTE OF HIS EXPERIENCES AS A NON-AUTISTIC INDIVIDUAL. PARTICULARLY HIS FAMILY'S CAN DIFFICULTY IN GETTING APPROPRIATE EDUCATIONAL PLACEMENTS AND SUPPORTS FOR HIM IN THE PUBLIC SCHOOL SYSTEM. HE ENCOURAGES SPECIAL EDUCATION PROGRAMS TO FOCUS ON TEACHING ALTERNATIVE COMMUNICATION SKILLS. HE ALSO WROTE ABOUT THE NEED FOR POLICY CHANGES THAT WOULD INCREASE ACCESS TO COMMUNICATION AND INCLUSION IN SOCIETY. MS. RITA RUBEN WROTE ABOUT THE EXPERIENCES OF HER DAUGHTER, A NON-VERBAL AUTISTIC ADULT WHO USES AAC TO COMMUNICATE. MS. CHRISTINE MCKEE WROTE ABOUT HER DAUGHTER'S EXPERIENCES WITH SUPPORTED TYPING AND LETTER BOARDS. SHE IS CONCERNED THAT USERS OF THESE MODES OF COMMUNICATION ARE UNFAIRLY TREATED WITH SKEPTICISM BECAUSE OF PREVIOUS CONTROVERSIES AND FALSE ALLEGATIONS ABOUT THEIR USE. SHE ALSO HIGHLIGHTED THE SUCCESSES OF STUDENTS IN A WASHINGTON, D.C. PUBLIC SCHOOL THAT HAS INCORPORATED A FACILITATED COMMUNICATION PROGRAM. MR. MATT HAYS WROTE ABOUT HIS EXPERIENCES AS A MINIMALLY VERBAL AUTISTIC ADULT. HE BELIEVES THAT COMMUNICATION IS A RIGHT AND THAT IT IS ESSENTIAL FOR COMMUNITY INCLUSION. THE AUTISTIC SELF ADVOCACY NETWORK OR ASAN CAUTIONS THE IACC AGAINST MAKING CLAIMS NANNY PARTICULAR FORM OH OF COMMUNICATION IS NOT, QUOTE, EVIDENCE-BASED. THEY ENCOURAGE MORE RESEARCH TO IDENTIFY WHICH METHODS OF COMMUNICATION WORK BEST FOR WHICH SUBSETS OF AUTISTIC PEOPLE. WILL THE SECOND TOPIC IS POTENTIAL CAUSES OF AUTISM. THERE WERE SIX COMMENTS RECEIVED ON THIS TOPIC. MS. STEPHANIE DOOR IS CONCERNED THAT AUTISM IS CAUSE BID VAC SEEPS. SHE SUBMITTED SEVERAL ARTICLES, LETTERS ND VIDEOS LINKING VACCINES AND AUTISM THAT SHE WOULD LIKE THE IACC TO CONSIDER. MS. SALLY PETROLIK IS CONCERNED THAT CHILDREN WITH VITAMIN B12 DEFICIENCY ARE MISTAKELY DIAGNOSED WITH AUTISM. SHE RECOMMENDS THAT WOMEN BE SCREENED FOR B12 DEFICIENCY DURING PRENATAL VISITS AND THAT INFANTS RECEIVE THE SAME SCREENING AT 3 TO 6 MONTHS OF AGE. MS. ALYSSA LEONARD BELIEVES THAT VITAMIN B12 DEFICIENCY IS MORE COMMON THAN CURRENTLY ACCEPTED AND THAT MANY CHILDREN WITH THIS DEFICIENCY ARE MISDIAGNOSED AS AUTISTIC. SHE BELIEVES POOR DIET, MEDICATIONS THAT KNOCK B12 ABSORPTION, FOLIC ACID SUPPLEMENTS THE LACK OF KNOWLEDGE HAVE ALL CONTRIBUTE TODAY A RISE IN B12 DEFICIENCY. MR. U.S. RESH CALKUN TE. BELIEVES EXPOSURE TO RADIO FREQUENCY ENERGY MAY BE A CAUSE OF AUTISM. DR. EILEEN NICOLE SIMON THANKS THE COMMITTEE FOR DISCUSSION OF HER PROPOSED RESEARCH INVESTIGATING THE ROLE OF THE INFERIOR CLICK LIE. SHE SUBMITTED SEVERAL POTENTIAL LINES OF RESEARCH FOR COMMENT BY THE COMMITTEE. DR. KA RSM I LANE WOULD LIKE THE IACC TO ADDRESS SEVERAL PAPERS LINKING TYLENOL USE TO AUTISM. THE THIRD TOPIC IS SERVICE NEEDS RESOURCES AND POLICY IMPLICATIONS. THERE WERE FIVE COMMENTS RECEIVED ON THIS TOPIC. MR. JAMES TRACK WROTE HE WAS PREVENTED FROM JOINING THE MILITARY BECAUSE OF HIS AUTISM, AND HE WOULD LIKE HELP ADVOCATING FOR A POLICY CHANGE. MISS WHITNEY ELLENBEE SHARED A LINK TO AN ONLINE VIDEO SHARING HER PERSONAL EXPERIENCE WITH HER AUTISTIC SON. MS. PAMELA VANDERGRIFT WROTE ABOUT THE EXPERIENCES OF HER SON IN THE CRIMINAL JUSTICE AND MENTAL HEALTH SYSTEMS. SHE BELIEVES THAT HER SON'S MENTAL HEALTH ISSUES HAVE NOT BEEN PROPERLY ADDRESSED AND HE HAS BEEN MISTREATED BECAUSE OF IT. MS. JANINE DAVIS IS CONCERNED ABOUT THE PRACTICES OF HER LOCAL SOCIAL SERVICES. THE AUTISTIC SELF ADVOCACY NETWORK OR ASAN IS CONCERNED THERE IS TOO LITTLE RESEARCH FUNDING DEVOTED TO IMPROVING SERVICES AND SUPPORTS. BASED ON THE IACC'S 2016 PORTFOLIO ANALYSIS REPORT. SPECIFICALLY, THEY BELIEVE THAT PRACTITIONER TRAINING SHOULD NOT BE CONSIDERED AS SERVICES RESEARCH. THEY ARE ALSO CONCERNED THAT 74% OF FUNDING ON LIFESPAN -- 74% OF THE FUNDING ON LIFESPAN RELATED ISSUES IS FOCUSED ON THE TRANSITION TO ADULTHOOD. WHILE ONLY 6% OF THIS FUNDING IS FOCUSED ON GENERAL QUALITY OF LIFE ISSUES. ADDITIONALLY, THEY ARE CONCERNED ABOUT THE PROPORTIONALLY LARGE A FUNDING DEVOTED TO UNDERSTANDING THE BIOLOGY AND CAUSATION OF AUTISM. THEY WOULD LIKE THE IACC TO ADVISE THE FEDERAL GOVERNMENT TO INVEST MORE ON RESEARCH THAT SUPPORTS AND BENEFITS AUTISTIC PEOPLE. ASAN WOULD ALSO LIKE THE IACC TO FOCUS ON RESEARCH IT THAT EXAMINES GENDER IN AUTISTIC ADULTS, GENDER IDENTITY AND SEXUAL ORIENTATION AND RACIAL AND SOCIOECONOMIC DISPARITIES IN AUTISTIC PEOPLE. FINALLY, ASAN WOULD LIKE THE EYE WHACK TO ENCOURAGE FEDERAL FUNDERS TO CLUL A DIVERSE COHORT AND CONSULT SPECIFICALLY WITH AUTISTIC INDIVIDUALS RATHER THAN WITH FAMILY MEMBERS OR WITH CAREGIVERS. THE FINAL TOPIC IS TREATMENTS AND INTERVENTIONS. THERE WAS ONE COMMENT RECEIVED ON THIS TOPIC. MR. PRABAGAR WOULD LIKE THE IACC TO DISCUSS THE POTENTIAL FOR INTRATHECAL AUTOLOGOUS ADULT STEM CELL THERAPY IN THE TREATMENT OF ASD. THIS CONCLUDES THE SUMMARY. THANK YOU AGAIN TO EVERYONE WHO SUBMITTED PUBLIC COMMENTS. >> THANK YOU, ONI, VERY MUCH. WE NOW HAVE TIME, PLENTY OF TIMENESS TIME NECESSARY FOR DISCUSSION OF THE PUBLIC COMMENTS AND WE CAN DISCUSS ANY OF THE COMMENTS YOU BHERD AND IT WOULD HEARD ABOUT, IT WOULD BE A GOOD IDEA TO DISCUSS THEM BECAUSE WE'VE HEARD FROM OUR CONSTITUENTS THAT THEY LIKE TO HEAR RESPONSES AND DISCUSSION FROM MEMBERS OF THE COMMITTEE. I SEE JOHN'S HAND RAISED, AND DAVID -- >> I WOULD ALSO LIKE TO SPEAK AS WELL THIS IS EDLYN PENA. >> THANK YOU, EDLYN IE. GOT . I'VE GOT YOU. LET'S START WITH JOHN. >> I WOULD FIRST LIKE TO THANK THE COMMENTERS FOR THE TONE OF COMMENT THAT WE GOT THIS TIME AROUND. SOME YOU HAVE KNOW THAT I HAVE TAKEN ISSUE WITH COMMENTS IN THE PAST, AND I WOULD LIKE TO APPLAUD THE COMMENTERS FOR DELIVERING US THOUGHTFUL, REASONABLE, CONSTRUCTIVE COMMENTARY, WHICH IS WHAT WE NEED TO MOVE FORWARD. I THINK THAT IS -- THAT'S REALLY GOOD. I SAW WITH RESPECT TO THE VIRUS COMMENT THAT THERE WAS SORT OF AN INCIPIENT QUESTION OR CONSIDERATION BETWEEN LOUIS HERE AND THE COMMENTER, AND IT JUST -- IT MADE ME REALIZE THAT IN SOME CASES, OUR COMMENTERS EXPRESS OPINIONS ABOUT THINGS WE OUGHT TO DO, LIKE WE HEARD THAT WE OUGHT THE TO HAVE A HIGHER LEVEL OR MORE INFLUENTIAL AUTISM COORDINATOR OR WE OUGHT TO CONDUCT MORE RESEARCH THAT WOULD BENEFIT ADULTS. WE CAN ALL UNDERSTAND THOSE STATEMENTS. BUT MOST OF US DO NOT UNDERSTAND THE DEBATE THAT BEGAN TO EMERGE WITH LOUIS AND THE VIRUS COMMENTER. AND I HAVE SUGGESTED BEFORE IN MEETINGS THAT SOME OF THESE COMMENTERS THAT RAISE COMPLEX MEDICAL OR SCIENTIFIC ISSUES HAVE OBVIOUSLY PUT A LOT OF THOUGHT INTO WHAT THEY COME HERE TO SAY, AND FOLKS LIKE I, AND MANY PEOPLE WHO ARE PSYCHOLOGISTS, WE CAN'T COMMENT OR UNDERSTAND THAT AND WE REALLY HAVE TO TURN TO YOU, JOSH, AND OTHERS FOR HELP IN UNDERSTANDING THAT, AND I GUESS I WOULD JUST APPRECIATE IF WE CAN DO THAT. >> SO I CAN PROVIDE SOME CONTEXT FOR DR. MARTIN'S DISCUSSION OF THE ISSUE OF STEALTH VIRUSES. AND I DON'T -- I WILL TRY TO AVOID COMING DOWN WITH TOO FIRM A CONCLUSION ONE WAY OR THE OTHER EXCEPT WITH THE ISSUE WITH REGARD TO THE RYE RELATIONSHIP TO VACCINES BECAUSE THAT'S WHERE WE CAN SAY THERE'S DEFINITIVE SCIENCE. I'M NOT FAMILIAR INTIMATELY WITH THE SCIENCE BEHIND THE ISSUE OF STEALTH VIRUSES. THAT'S SOMETHING THAT I WOULD HAVE TO LOOK UP. IF THERE'S A SCIENTIST IN THE ROOM WHO WOULD LIKE TO -- FROM NIMH WHO MIGHT BE ABLE TO PROVIDE MORE DETAILS ON THAT, I WELCOME THAT. BUT I AM FAMILIAR WITH WHAT IS A LONG HISTORY OF TRYING TO INVESTIGATE THE ROLE OF VIRAL INFECTIONS IN THE DEVELOPMENT OF AUTISM. THERE HAVE BEEN A NUMBER OF STUDIES OVER THE YEARS, AND I WOULD SAY THAT THE ROUGH CONCLUSION FROM THEM IS THAT VIRAL INFECTION, PARTICULARLY IN THE PRENATAL PERIOD, PROBABLY PLAYS A CONTRIBUTING ROLE TO THE DEVELOPMENT OF AUTISM, BUT IT IS NOT DEFINITIVE, THAT IS, IF THE MOTHER HAS A VIRUS INFECTION DURING THE PREGNANCY, EVERY MOTHER HAS ONE OR OTHER VIRAL INFECTION DURING PREGNANCY. IF ANYTHING, IT'S GOING TO RAISE THE RISK, AND THE QUESTION IS HOW MUCH, AND IN JEP, THE RISK GENERAL, THE RISK RAISE BID SUCH INFECTIONS WHERE IT'S BEEN DOCUMENTATION IS THE RISK TO ANY GENE, WHICH IS PRETTY LOW, IT'S A PRETTY SMALL EFFECT. AS MANY OF YOU MAY KNOW, THE THOUGHT IS, AND THERE'S DAY IT TA TO SUPPORT DATA TO SUPPORT IT BUT I WOULDN'T SAY WE'VE DEFINITIVELY PROVEN IT, IT'S NOT THE VIRAL INFECTION PER SE BUT THE IMMUNE RESPONSE TO THAT VEERL INFECTION WHICH RAISES ONE'S RISK FOR NEURODEVELOPMENTAL DISORDERS OF ALL SORTS INCLUDING AUTISM. THAT, I WOULD SAY, IS THE SCIENTIFIC CONSENSUS RIGHT NOW, BUT I WOULD NOT SAY IT IS A DEFINITIVE ONE, AND THERE IS CERTAINLY ROOM FOR A MINORITY OF INDIVIDUALS WITH AUTISM HAVING A MORE DEFINITIVE CAUSE THAT WE HAVE NOT YET DISCOVERED. DR. MARTIN REFERRED TO THE FINDING THAT STEALTH VIRUSES WERE OBTAINED FROM INDIVIDUALS WITH AUTISM. AGAIN, I'M NOT INTIMATELY FAMILIAR WITH THE FIELD OF STEALTH VIRUSES BUT I DID A QUICK PUBMED SEARCH CH WHILE HE WAS TALKING BECAUSE I WAS CURIOUS MYSELF. THE ONLY MENTION OF STEALTH VIRUSES IN AUTISM THAT I COULD FIND IN PUBMED, AND IT MAY BE THAT SOMEONE COULD LOOK HARDER, WAS DR. MARTIN'S OWN REPORT IN 1995 OF A SINGLE STEALTH VIRUS BEING ISOLATED FROM AN AUTISTIC CHILD, AND I DON'T KNOW BUT I'D IMAGINE THAT IF THERE WERE FURTHER RESEARCH INTO THIS, WE WOULD KNOW ABOUT IT ONE WAY OR THE OTHER, BUT YOU I HAVE NOT BEEN ABLE TO LOCATE IT IN MY QUICK SEARCH. SO I AT THIS POINT OH POINT CAN'T PUT MUCH STOCK IN DR. MARTIN'S OPINION THAT STEALTH VIRUSES PLAY A ROLE IN THE DEVELOPMENT OF AUTISM BUT THE NOTION THAT VIRUSES AND RELATIONSHIP TO IMMUNE RESPONSES PLAY A ROLE IN AUTISM IS A WELL-FOUNDED SCIENTIFIC NOTION, IT IS ONE WHICH WE ARE INVESTIGATIG VERY HEAVILY ACROSS MULTIPLE INSTITUTES AT NIH, AND IT'S ONE WHICH WE HOPE SOMEDAY MIGHT YIELD FURTHER INSIGHT INTO BOTH THE MECHANISMS OF AUTISM, WAYS TO PREVENT IT AND/OR WAYS TO TREAT IT. COMING BACK TO THE ISSUE OF THE RELATIONSHIP WITH VACCINES, IF DR. MARTIN'S HYPOTHESIS WAS CORRECT, AND THE VACCINE INTERACTION WITH STEALTH VIRUSES WERE PLAYING A SIGNIFICANT ROLE IN THE CAUSATION OF AUTISM, WE WOULD KNOW IT BY NOW DEFINITIVELY, INCLUDING A PAPER WHICH WE'RE GOING TO DISCUSS LATER TODAY IN THE SUMMARY OF THE DISCUSSION, THERE HAVE NOW BEEN INNUMERABLE EPIDEMIOLOGIC STUDIES, AND ALTHOUGH THE SIGNAL WOULD BE SMALL POTENTIALLY IF ONLY A SMALL MINORITY OF CHILDREN WITH AUTISM WERE INFECTED WITH STEALTH VIRUS AND THEN HAD IT ACTIVATED, IF YOU WILL, BY A VACCINATION, WE WOULD SEE THAT SIGNAL UNLESS ITS CONTRIBUTION WAS SO SMALL AS TO BE MEANINGLESS. SO I THINK WE CAN DEFINITIVELY SAY THAT PARTICULAR ASPECT OF THE HYPOTHESIS HAS BEEN DISPROVEN IN THE 20-SOME-ODD YEARS IT'S BEEN SINCE THE STEALTH VIRUS HYPOTHESIS WAS RAISED. SO I HAVE NEXT -- WELL, LET'S GO TO EDLYN ON THE PHONE AND THEN WE'LL CONTINUE WITH SAM AND DAVID. >> HI, CAN YOU HEAR ME OKAY? >> YES. >> OKAY, PERFECT. THANK YOU. SO I WANTED TO FOLLOW UP ON THE COMMENTS REGARDING THE U.N. PANEL ON ASSISTIVE TECHNOLOGY. I WAS HEARTENED TO READ THE PUBLIC COMMENTS IN SUPPORT OF THE TOPIC, AND TO BE COMPLETELY TRANSPARENT, I'M REALLY PASSIONATE ABOUT SUPPORTING PEOPLE WHO TYPE AND SPELL TO COMMUNICATE WHO WOULD NOT OTHERWISE HAVE A VOICE TO ADVOCATE FOR THEMSELVES, COMMUNICATE OR PARTICIPATE IN DIFFERENT OPPORTUNITIES AND EDUCATION OR THE COMMUNITY. I DO RESEARCH AND ADVOCACY WORK ON THIS TOPIC SO I THINK IT TOOK A LOT OF GUTS FOR THE U.N. TO PUT ON THIS PANEL BECAUSE THERE HAS BEEN QUITE A BIT OF CONTROVERSY SURROUNDING THE EXTENT TO WHICH THE MESSAGES GENERATED BY PEOPLE WHO TYPE AND SPHOAL COMMUNICATE ARE AUTHENTIC AUTHENTIC. THERE ARE A FEW BUT VERY LOUD NAYSAYERS IN THE AUTISM COMMUNITY WHO ARGUE THAT METHODS LIKE FACILITATED COMMUNICATION AND RAPID PROMPTING METHODS SHOULD BE STOPPED ALL TOGETHER. THESE FORMS OF COMMUNICATION DO REQUIRE COMMUNICATION PARTNER FOR THOSE OF YOU WHO AREN'T FAMILIAR WITH THESE METHODS. AND TO DIFFERENT EX-TENTS, THE COMMUNICATION OF PARTNER OFFERS PHYSICAL OR VERBAL PROMPTS DEPENDING ON HOW INDEPENDENT THE COMMUNICATOR IS OR HOW STRONG THE RELATIONSHIP IS BETWEEN THE COMMUNICATOR AND THE COMMUNICATION PARTNER. AND I CERTAINLY THINK IT'S HEALTHY AND APPROPRIATE TO ASK QUESTIONS ABOUT VALIDITY OF THE METHODS BEING USED TO TEACH TYPING AND SPELLING TO COMMUNICATE. THERE CERTAINLY HAS BEEN RESEARCH THAT SHOWS THERE CAN BE INFLUENCE BY THE COMMUNICATION PARTNER SO I'M NOT IGNORING THAT, BUT I'VE ALSO SEEN AND MET INDIVIDUALS WHO NOW COMMUNICATE INDEPENDENTLY AND WHAT I MEAN BY THAT IS THAT THEIR COMMUNICATION PARTNER IS IN THE ROOM WITH THEM, PERHAPS SITTING NEARBY, BUT NOT OFFERING ANY PHYSICAL SUPPORT OR PROMPTS. AND OTHER INDIVIDUALS WHO TYPE AND SPELL ARE ATTENDING COLLEGES, INCLUDING PLACES LIKE U.C. BERKLEY WHICH WE ALL KNOW ARE VERY COMPETITIVE. THESE INDIVIDUALS EXEMPLIFY WHAT'S POSSIBLE WITH THESE COMMUNICATION METHODS, AND YOU CAN EVEN LOOK UP THE VIDEOS ON INDIVIDUALS WHO TYPE AND SPELL TO COMMUNICATE, THERE'S A GREAT WEBSITE BY AN ORGANIZATION CALLED UNITED FOR COMMUNCATION RIGHTS, OR CHOICE, I'M SORRY, UNITED OOOD FOR COMMUNICATION CHOICE. SO I WANT TO SUPPORT THE COMMENTS THAT WERE MADE TODAY. I BELIEVE IACC SHOULD TAKE THE OPPORTUNITY IF THE COMMITTEE AGREES TO CONTINUE THE CONVERSATION THAT THE U.N. PANEL STARTED, AND I DON'T THINK IT'S A TOPIC THAT HAS BEEN ADDRESSED BY IACC IN THE PAST TO MY KNOWLEDGE, BUT I DO BELIEVE THAT LEAVING NON-SPEAKING INDIVIDUALS WITHOUT A FORM OF COMMUNICATION OR WITHOUT A VOICE IS AN INJUSTICE, SO I ENCOURAGE US TO CONSIDER INVITING SPEAKERS WHO USE THESE FORMS OF COMMUNICATION TO PRESENT TO THE COMMITTEE IN THE FUTURE SO WE CAN HAVE A MEANINGFUL CONVERSATION ABOUT HOW TO SUPPORT THE DEVELOPMENT OF THESE METHODS. THE VALIDITY OF THESE METHODS TO SUPPORT THE PEOPLE WHO CHOOSE TO USE THESE METHODS. AND I'M HAPPY TO ASSIST IN ORGANIZING THAT IF THAT'S EVER SOMETHING THAT COMES TO FRUITION FRUITION. THANK YOU. >> THANK YOU, EDLYN. WE HAVE SAM AND DAVID NEXT BUT I WANT TO ASK IF THERE'S ANYBODY ELSE ON THE PHONE WHO WOULD LIKE TO CONTRIBUTE ON THE CONVERSATION, I'LL PUT YOU ON THE LIST. >> NO THANKS. >> OKAY. SAM? >> THANKS. I'M GLAD THAT EDLYN SORT OF STARTED WHAT I WAS ALSO GOING TO SAY. BEFORE I GO ON TO COMMUNICATION, I DO WANT TO ACKNOWLEDGE THE COMMENTER WHO SAID THAT HE WAS UNABLE TO JOIN THE MILITARY DUE TO AN AUTISM DIAGNOSIS, AND THIS IS AN ISSUE THAT SOMETIMES COME TO OUR ATTENTION TOO WHERE PEOPLE WILL BE TOLD THAT THEY CAN'T JOIN THE MILITARY, THEY CAN'T GET A PILOT'S LICENSE, NOT BASED ON AN INDIVIDUALIZED ASSESSMENT OF WHAT THE PERSON CAN AND CAN'T DO, BUT BECAUSE THE DIAGNOSIS ALONE WILL BE CONSIDEED A CONTRAINDICATING -- A DISQUALIFICATION TO GETTING THE LICENSE OR ENTERING THE CAREER, AND I THINK WE DO REALLY NEED TO -- WE HAVE TO REALIZE THAT MANY OF THESE FIELDS ARE A BIG PART OF AMERICAN LIFE, AND MANY OF US, YOU KNOW, HAVE NOT BEEN IN THE MILITARY, HAVE NEVER REALLY CONSIDERED JOINING THE MILITARY, BUT YOU IT'S, YOU KNOW, ONE OF THE NATION'S BIGGEST EMPLOYERS, AND IT'S SOMETHING THAT IF YOU FEEL CALLED TO SERVICE, IT'S REALLY DEVASTATING TO BE BARRED FROM SERVING THIS COUNTRY. BECAUSE OF A DIAGNOSIS. SO I THINK WE REALLY DO NEED TO ACKNOWLEDGE THAT AND MAYBE HAVE A CONVERSATION ABOUT, YOU KNOW, AREAS OF LIFE OF THAT AUTISTIC ON COMMUNICATION, I THINK THAT AS EVELYN POINTED OUT, THERE'S CONTROVERSY AND WHEREVER THERE'S CONTROVERSY IT'S A GREAT PLACE FOR SCIENCE TO JUMP IN. WE HAVEN'T HAD MUCH NEW RESEARCH ON COMMUNICATION METHODS, FOR A WHILE THERE WAS A LITTLE SPATE OF RESEARCH ON THINGS LIKE FACILITATED COMMUNICATION, 20 YEARS AGO, AND THE NUMBER OF PEOPLE STUDIED WAS ACTUALLY PRETTY SMALL. THESE STUDIES HAD A SMALL SAMPLE SIZE AND THE SAMPLES MIGHT NOT HAVE BEEN GREAT SAMPLES. SO THERE'S SKETCHY STUFF GOING ON IN THE WORLD OF ASSISTIVE COMMUNICATION AND LESS SKETCHY STUFF GOING ON IN THE WORLD OF ASSISTED COMMUNICATION. WE NEED TO CONTINUE RESEARCHING AND CONTINUE TRYING TO FIND NEW WAYS TO ASSESS THE VALIDITY OF COMMUNICATION. IT'S SOMETHING THAT IACC HAS THE POTENTIAL TO TAKE A LEADERSHIP ROLE IN ACTUALLY SAYING WHAT IS -- WHAT WOULD GOD RESEARCH ON THIS LOOK LIKE. I THINK WE SHOULD TALK ABOUT THAT AT SOME POINT. >> THANK YOU. DID YOU WANT TO RESPOND TONA? GO AHEAD. >> I'M WITH THE NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS AND I WANT TO SAY A COUPLE OF THINGS WITH REGARD TO ASSISTIVE AND AUGUST MENTIVE COMMUNICATION. ONE OUR INSTITUTE HAS BEEN INVOLVED IN SUPPORTING THAT RESEARCH FOR A NUMBER OF YEARS. WE HAVE A PROGRAM PERSON WHO COORDINATES THAT RESEARCH, WE HAVE A FUNDING OPPORTUNITY ANNOUNCEMENT WHICH IS A WAY WE TELL THE RESEARCH COMMUNITY THIS IS A TOPIC WE WOULD LIKE TO SEE RESEARCH IN AND WE HAVE ONE FOCUSED ENTIRELY ON AUGMENTIVE AND ALTERNATIVE COMMUNICATION SO WE'RE SOLICITING RESEARCH IN THAT AREA ON A NUMBER OF DIFFERENT TOPICS FROM NOT JUST FOCUSED ON AUTISM, THERE ARE CERTAINLY PEOPLE WITH SEVERE COMMUNICATION DISORDERS WHO CANNOT COMMUNICATE VERBALLY. SO WE HAVE DONE WORKSHOPS AND WE HAVE A RESEARCH PORTFOLIO RIGHT NOW, IN THAT AREA. SO OUR INSTITUTE IS INTERESTED, WE SUPPORT AND WELCOME MORE APPLICATIONS IN THAT AREA. >> IT MIGHT BE WORTHWHILE IF WE THINK ABOUT A SESSIO ON THIS TOPIC COMMUNICATION ASSISTIVE DEVICES IF WE START HEARING FROM YOUR PORTFOLIO, YOU HAVE AUTISM AND OTHER DISORDERS. THAT'S SOMETHING TO THINK ABOUT. WE'RE UP FOR TOPICS ON THIS INCARNATION OF IACC. SO WE CAN STRONGLY CONSIDER THAT AS WE MOVE INTO THE NEXT ITERATION. I'LL PUT YOU ON THE LIST AGAIN JOHN, NEXT I HAVE TO GO TO DAVID. >> I WANTED TO RESPOND TO THE COMMENTS BOTH FROM SAFE MINDS AND ALSO FROM SAM ABOUT THE NEED FOR -- THE NEED MORE MORE COMPREHENSIVE SERVICES RESEARCH IN AUTISM AND THE WAY THE BUDGET IS APPORTIONED. MY UNDERSTANDING IS AT LEAST FROM NEMH AND OTHER AGENCIES, THERE HAVE BEEN A NUMBER OF CALLS SPECIFICALLY FOR AUTISM SERVICES RESEARCH THAT HAVE NOT BEEN SUCCESSFUL AS THE PROGRAM DIRECTORS WOULD LIKE. BOTH IN THE QUANTITY AND QUALITY OF SUBMISSIONS AND WE HAVE A SUBSTANTIAL DISCONNECT BETWEEN FINDINGS FROM SERVICES RESEARCH AND HOW IT INFLUENCES POLICY DECISIONS. I WONDER IF ONE OF THE ACTIVITIES OF THE IACC COULD BE TO SUPPORT THAT WORK IN VERY SPECIFIC WAYS. THAT IS, I THINK WE HAVE A GROWING NUMBER OF ESPECIALLY JUNIOR INVESTIGATORS AND OTHER INVESTIGATORS MOVING SIDEWAYS WHO ARE INTERESTED INs THESE ISSUES BUT DON'T NECESSARILY HAVE THE SKILLS AND EXPERIENCE TO CONDUCT RESEARCH THAT WOULD BE POLICY RELEVANT AND WE DON'T HAVE VERY GOOD MECHANISMS OTHER THAN PRESENTATION OF RESEARCH FIND. TO GROUPS LIKE THIS. FOR MOVING THOUGH RESEARCH FINDINGS TO PRACTICE IN MEANINGFUL WAY. IT SEEMS LIKE ONE OF THE THINGS IACC COULD DO WOULD BE TO CREATE TRAINING MENTORSHIP AN SUPPORT OPPORTUNITIES TO BUILD INFRASTRUCTURE NEEDED TO CONDUCT THAT RESEARCH IN A MEANINGFUL WAY. AND USE ITS CONNECTIONS WITH THE RELEVANT FEDERAL ENTITIES TO THINK MORE MEANINGFULLY ABOUT HOW THOSE FINDINGS COULD BE USED IN PRACTICE, TO BRIDGE THAT RESEARCH TO PRACTICE DIVIDE. I WONDER YOUR THOUGHTEN THAT AND WHETHER THERE'S CONCRETE STEPS WE CAN TAKE TO MOVE THAT FORWARD. THIS IS AN ISSUE THAT COMES UP ALMOST EVERY IACC MEETING. >> I'M WONDERING ANN WAGNER IF YOU'RE IN THE AUDIENCEN CAN JOIN US, I'LL ASK YOU TO COMMENT ON THE FIRST PART OF WHAT YOU SAID WHICH IS QUALITY AND QUANTITY OF SERVICES RESEARCH APPLICATIONS BUT LET ME ADDRESS THE SECOND PART FIRST I THINK WE WERE REFLECTING AND THERE WERE OTHER COMMENTS BY SAFE MINDS REALLY INTERESTING ABOUT THE ISSUE OF TRAINING THE NEXT -- NOT JUST THE NEXT GENERATION, TRAINING CAREGIVER PROFESSIONAL WHOSE CAN GIVE CARE WITH AUTISM AND I THINK THAT PLUS TRAINING RESEARCHERS IS REALLY IMPORTANT. WITHOUT SPECIFYING THE SERVICES COMPONENT I AGREE IS A PARTICULAR CHALLENGE AT TIMES, CHILD PSYCHIATRY RESEARCH IS ABOUT AREA WE STRUGGLE, IN FACT AUTISM IS RELATIVE STRENGTH IN CHILD PSYCHIATRY RESEARCH IN TERMS OF WANNING TO GO INTO IT. WE NEED TO THINK NOER CREATIVELY WE CAN ENHANCE THE TRAINING OF OUR WORK FORCE BE IT FOR RESEARCH OR FOR CARE. THAT IS ANOTHER INTERESTING TOPIC FOR IACC TO CONSIDER. DAVID STARTED OUT BY MAYBEING A COMMENT, I DON'T THINK IS TERRIBLY OFF BASE. THAT WE HAVE HAD -- WE HAVE HAD CHALLENGES DEVELOPING THE SERVICES PORTFOLIO IN AUTISM. WOULD YOU LIKE TO COMMENT ABOUT THAT AT ALL? WHAT WE TRIED AND WHAT IS MORE OR LESS SUCCESSFUL? NOT JUST DAVID BUT OF COURSE EVERYONE. >> DAVID PROBABLY KNOWS WHAT WE TRIED BUT FOR PEOPLE WHO DON'T, WE HAVE A SERIES OF REQUESTS FOR APPLICATIONS WITH SET ASIDE FUNDING SO AIMED AT DIFFERENT AGE DEVELOPMENTAL PERIODS AND THE MECHANISM WAS DESIGNED TO SUPPORT EITHER EARLY STAGE EXPLORATORY RESEARCH FOR AREAS THAT SEEM LIKE THEY WERE KIND OF NEW AND GROWING OR MORE DEVELOPED AREAS THOSE THREE RFAs SO THE ONE AIMED AT EARLY CHILDHOOD GOT A GOOD RESPONSE, THE ONES AIMED AT OLDER ADOLESCENTS AND ADULTS HAD A SMALLER RESPONSE. THE QUALITY WAS GOOD BUT I THINK IT WAS REFLECTIVE OF HOW MANY PEOPLE ARE ACTUALLY IN THE FIELD. SO THE RESULT OF THAT THERE WERE RFAs TO FUND SOME CAREER DEVELOPMENT AWARDS. TO TRY TO FACILITATE PEOPLE EITHER AUTISM RESEARCHERS NOT SERVICES RESEARCHERS TAKING ON SERVICE RESEARCH OR OR SERVICE RESEARCHERS NOT IN THE AUTISM FIELD MOVING IN. SO NUMBER O APPLICATIONS FOR THOSE AWARDS WERE LESS THAN WE WOULD HAVE HOPED SO I DON'T THINK WE HAVE GIVEN UP BY ANY MEANS BUT HAPPY TO HEAR SUGGESTIONS. >> Q. LET ME JUST SAY BY WAY OF INTRODUCTION I KNOW PEOPLE AT THE TABLE KNOW BUT MAYBE NOT PEOPLE LISTENING IN, ANN HAS BEEN IN CHARGE OF THE WORTH SEVERAL WONDERFUL COLLEAGUES HERE AT NIMH AND AUTISM RESEARCH EFFORTS AND NIH FOR SOME TIME, LAST YEAR WAS APPOINTED BY THE SECRETARY OF HEALTH AND HUMAN SERVICES AS THE NATIONAL AUTISM COORDINATOR. I ASK HER TO SPEAK ABOUT THIS PRIMARILY THE RESEARCH SIDE. >> SO AT NIH I THINK THAT IN THE INSTITUTES THAT HAVE MAJOR AUTISM PORTFOLIOS, NIH IS THE ONLY ONE WITH FORMAL RESEARCH PROGRAM. SO THAT'S TRUE. BUT THERE ARE OTHER DEPARTMENTS AND AGENCIES THAT DO SERVICES RESEARCH SO WE'RE NOT THE ONLY ONE, I'LL MENTION A COUPLE WHEN I OUTCOMES MEASURES BUT THERE ARE OTHER PLACES IT'S HAPPENING TOO. DID YOU HAVE A FOLLOW-UP DAVID? >> I DON'T WANT TO LEAVE ALSO THE PART OF TRANSLATING RESEARCH TO PRACTICE. I WONDER IF THERE'S A MORE SPECIFIC ROLE THE IACC COULD PLAY. THAT IS TRY AND MAYBE WE CAN COME BACK WHEN ANN DOES GIVE HER REPORT BECAUSE TO SOME EXTENT THAT'S WHAT THE NATIONAL AUTISM COORDINATOR, ONE POTENTIAL ROLE FOR THAT NATIONAL AUTISM COORDINATOR. BUT LET ME JUST SAY BY WAY OF EDITORIALIZING, WE STRUGGLE ACROSS THE ENTIRE NIMH PORTFOLIO. GIVEN THE FRACTURED CARE OF HEALTHCARE DELIVERY ACROSS THE UNITED STATES STRUGGLE ACROSS THE ENTIRE PORTFOLIO WHERE WE ARE RELATIVELY SUCCESSFUL WITH TRANSLATING RESEARCH INTO PRACTICE IS COMMERCIAL INTI FEWS TO TAKE OVER, DRUGS DEVICES ET CETERA TENDS TO HAPPEN FASTER THAN SERVICE PACKAGES PARTICULARLY THOSE THAT ARE PRIMARILY PSYCHOSOCIAL INTERVENTION BASED WHICH FRANKLY WHAT WE HAVE IN THE AUTISM SPACE RIGHT NOW ARE SOCIAL INTERVENTIONS BEHAVIORAL INTERVENTIONS FOR THE MOST PART SO THAT'S A BIG PROBLEM AND AGREE IACC CAN PLAY A ROLE THROUGH INFLUENCING ACTIVITIES OF NATIONAL AUTISM COORDINATOR. WE CAN TALK MORE ABOUT THAT LATER. I HAVE YOU ON THE LIST SAM. JOHN YOU ARE NEXT. ANYONE ON THE PHONE WANTS TO GET IN THE QUEUE? >> COUPLE OF THINGS. WITH RESPECT TO THE COMMENTER WHO WROTE IN H TO US THAT HE COULD NOT JOIN THE SERVICE BECAUSE OF AN AUTISM DIAGNOSIS, I AM I ABSOLUTELY SYMPATHIZE WITH THAT AND I WOULD SAY IN RESPONSE TO HIM THAT I HAVE BEEN IN COMMUNICATION WITH FOLKS AT THE VARIOUS SERVICE WAR COLLEGES ABOUT STUDIES THAT THEY ARE SEEKING TO UNDERTAKE ABOUT CHANGING THE CURRENT BAN ON PEOPLE WITH AUTISM DIAGNOSES SERVING IN THE ARMED FORCES BUT SAM YOU DIDN'T HEAR THIS BUT THE LAST MEETING, I DON'T THINK YOU WERE AT, WE HAD THAT'S WHAT I WAS THINKING. WE HAD A PRESENTATION FROM A MEDICAL OFFICER IN DEFENSE AND I SPECIFICALLY ASKED HIM ABOUT THAT BAN AND HE REPEATED TO ME HIS SUPPORT OF THE MAINTENANCE OF IT SO IT IS CLEARLY A THING THERE ARE TWO SCHOOLS OF THOUGHT IN THE MILITARY RIGHT NOW BUT TO EXTENT I CAN I'M WORKING WITH THE FOLKS AT THE WAR COLLEGES, TO CHANGE IT AND WOULD ENCOURAGE OTHERS OF YOU TO THINK ABOUT IT. THE THING I WANTED TO SAY ABOUT ASSISTED COMMUNICATION AND RELATED COMMENTS IN THE WRITTEN COMMENT STREAM, I HAVE SEEN SOME REALLY HARSH DON DEN NATIONS OF A-- CONDEMNATION OF ASSISTIVE COMMUNICATION OF VARIOUS TYPES AND THERE'S TREMENDOUS POTENTIAL FOR ABUSE WHEN SOMEONE PURPORTS TO SPEAK FOR ANOTHER PERSON WITH CANNOT SPEAK DIRECTLY. I UNDERSTAND HOW IF THAT IS SPEAKING HAPPENED TO INCLUDE ACCUSATIONS OF SEXUAL ASSAULT LIKE WE READ ABOUT MAYBE YOU COUD FEEL STRONGLY ABOUT IT BUT I'VE HAD STUDENTS COME TO MY CLASSES AD WILLIAM AND MARY WITH ASSISTANCE AND I ENPHAGOTHOSE PEOPLE ASKED THEM QUESTIONS SEEN THEM THINK ABOUT IT AND ANSWER ME WITH THE AID OF THEIR ASSISTANT IT'S OBVIOUS TO ME THERE'S VERBAL INTERCHANGE AND THOSE WHO READ AND LISTENED TO THAT EXCHANGE DON'T BE SO QUICK AND HAIR. TO JUDGE THAT SOMETHING IS ABSOLUTELY TRUE OR FALSE. THERE'S A LOT OF SHADES OF GRAY THERE. >> THANK YOU, JOHN. SAM. >> I WANTED TO CHIME IN ON SOLICITING RESEARCH ON SERVICES. IT'S VERY DIFFICULT FOR US TO FIND OUT WHAT'S GOING ON IN TERMS OF WHY WE'RE SEEING THE KIND OF RESPONSE WE WAS. AS SELF-ADVOCATE I'M GOING TO GO ON PRINCIPLES OF NOTHING ABOUT IT WITHOUT OUT AND SUGGEST WE REACH OUT TO PEOPLE WHOLE ARE DOING WORK ON SERVICES APT ARGUING RESEARCH ON ADULTS. I HAVE DEFINITELY HEARD ANECDOTAL COMPLAINTS FROM PEOPLE IN THIS FIELD SAYING THEY WERE HAVING HARD TIME WITH THE IRB, OR SUBMITTED A PROPOSAL AND THE PEOPLE REVIEWING THE PROPOSAL DIDN'T UNDERSAND WHAT WAS GOING ON AND THEY FELT FRUSTRATE BY THE PROCESS. WE NEED TO HEAR FROM RESEARCHERS BECAUSE IF PEOPLE ARE FEEL LIKE THE PROCESS ISN'T WORKING FOR THEM, THEY'RE NOT GOING TO STAY IN THE FIELD AND KEEP DOING THAT RESEARCH AND MIGHT NOT ADVISE PEOPLE TO ENTER THAT FIELD. SO WE NEED TO HEAR FROM PEOPLE THEMSELVES ABILITY WHAT'S GOING ON. OTHERWISE I DON'T THINK WE'RE GOING TO BE ABLE TO SOLVE THIS MYSTERY. >> GOOD POINT, SAM. TO CERTAIN EXTENT WE CAN ALWAYS DO THAT AT NIH. IN FACT I HAVE A WORK GROUP IN THE NIMH TO GET BETTER REGULAR FEEDBACK FROM THE INVESTIGATOR COMMUNITY. AND THEY HAVE COME UP WITH A NUMBER OF SUGGESTIONS WE'RE GOING TO TRY TO IMPLEMENT SOME OF THOSE MOST WORKABLE. BUT THERE ARE RESEARCH IS A CHALLENGING FIELD TO GO INTO. SOME WE WANT TO MAINTAIN, ONE BEING WE WANT RESEARCH WE FUND TO BE HIGH QUALITY, HIGH IMPACT RESEARCH. OTHERS OF THOSE CHALLENGES, WE HAVE TO STRUGGLE TO TRY TO OVERCOME. OTHER QUESTIONS OR COMMENTS? WE CAN TALK ABOUT ANY PUBLIC COMMENTS MADE. LEWIS. >> I WOULD LIKE TO SAY BRIEFLY, WE WELCOME SOCIAL SCIENTIST, INTEND TO MAKE ALL SORT OF SCIENCE SOCIAL RESEARCH EASIER. >> THANKS FOR THE BENEFIT OF SCIENTISTS LISTENING IN MIGHT BE INTERESTED DESCRIBE THE SPARK COHORT BRIEFLY? >> THIS IS A COHORT BY THE SIMON FOUNDATION A FEW YEARS AGO. THE GOAL IS TO GET 50,000 FAMILIES. AT THIS POINT WE HAVE MORE THAN # 0,000 INDIVIDUALS WITH AUTISM WHO ENROLLED THROUGH 245 CLINICAL CENTERS AND ONLINEMENT BEEN ABOUT TWO THIRD COHORTS AVAILABLE THROUGH CLINICAL CENTERS AND EVERYBODY IS CONSENTED FOR RESEARCH. IF PEOPLE ASK FOR PEOPLE HAVE TO SUBMIT AN APPLICATION WHICH IS ONLY SCREENED FOR SCIENTIFIC MERIT, THEN WE DO OUR BEST TO PUT THE SCIENTISTS IN CONTACT WITH THE PEOPLE THAT MEET THEIR RESEARCH SPECIFICATIONS, OBVIOUSLY THEN IT'S STILL UP TO THE INDIVIDUALS WHETHER OR NOT THEY CHOOSE TO ENGAGE IN A PROJECT OR NOT. WE HAVE HAD 40 PROJECTS GOING THROUGH. SO IT'S PROBABLY SCIENCE AND GENETICS AND OTHER TYPES OF SCIENCE. OBVIOUSLY WE WANT -- WHAT I CAN SAY IS THE PEOPLE WELCOME RESEARCH, THEY WANT TO BE ENGAGED THAW WANT TO CONTRIBUTE TO SOLUTIONS AND THE MORE THEY USE THIS COHORTS THE BETTER SINCE OF WELL BEING OR SENSE OF PROGRESS THE INDIVIDUALS WITHIN IT WILL GET. IT IS A MUTUALLY POSITIVE THING. THAT'S OUR INTENTION. IF THERE ARE THINGS THAT MAKE IT DIFFICULT, OBVIOUSLY WE WOULD LIKE TO KNOW. WE TRY TO DO OUR BEST TO CORRECT EFFICIENCIES. >> THANKS, LEWIS. DAVID. >> MY GROUP IS ACTUALLY TRY TO TAKE ADVANTAGE OF SPARK TO DO THIS AND WE WOULD BE THRILL #-D THRILLED TO TALK ABOUT WAYS A FEW QUESTIONS COULD BE ADDED OR THE INSTRUMENTS COULD CHANGE A LITTLE BIT, THAT MAKE IT MORE AMENABLE TO SERVICES RESEARCH, MY UNDERSTANDING SO FAR ONLY ONE OUT OF THOSE 40 PROJECTS HAS BEEN SERVICES RESEARCH PROJECT AND THAT'S BECAUSE OF SOME OF THE DIFFICULTIES THEY USE IN THE COHORT FOR THAT BUT WITH A FEW CHANGES IT WOULD BE A GREAT RESOURCE FOR SERVICES RESEARCHERS. >> I'LL EMAIL MY ASSISTANT AND SET UP A TIME TO CHAT NEXT WEEK. COUPLE OF MINUTES LEFT. OKAY. WE'RE GOING RIGHT TO THE PANEL PRESENTATION. STAND UPTAKE A DEEP BREATH. WE HAVE A FEW MINUTES WHILE THEY SET UP. BUT STICK AROUND, NEXT IS PAM PRESENTATION ON DISABILITY EMPLOYMENT. ARE WE READY, DO YOU NEED TO SET UP? LOCKS LIKE WE ARE READY. WE'LL GO RIGHT INTO IT. SO MY PLEASURE TO INTRODUCE DR. JEW THROUGH TAYLOR, IACC MEMBER AND ASSOCIATE PROFESSOR PEDIATRICS AT VANDERBILT AT THE KENNEDY CENTER. AND JULIE IS GOING TO INTRODUCE THE REST OF THE PANELISTS AS WE GO ALONG. LET ME IN ADVANCE THANK YOU FOR HELPING US ORGANIZE THIS PAM, WE'RE EXCITED -- PANEL. WE'RE VERY EXCITED TO HEAR. >> MY PLEASURE. I'M ACTUALLY GOING TO START TODAY BY GIVING A LITTLE BIT OF BACKGROUND ON SOME OF OUR WORK THAT DISCUSS IT IS CHALLENGES OF EMPLOYMENT AND THEN MOVE FROM THAT INTO INTRODUCING OUR PANELIST WHOSE ARE DOING INNOVATIVE PROGRAMS RESEARCH AND PRACTICES AROUND IMPROVING EMPLOYMENT FOR PEOPLE ON THE AUTISM SPECTRUM SO I'LL SET STAGE WITH CHALLENGES THEN MOVE WHAT PEOPLE ARE DOING ABOUT IT BECAUSE REALLY PROMISING. I WILL TALK CURRENT RESEARCH AND FUTURE DIRECTION AND BRING UP THEMES THAT HAVE COME UP TODAY IN THE PRESENTATION SO EVERYBODY HAS DONE A REALLY NICE JOB SETTING THE STAGE FOR THINGS EEL TALK ABOUT. FIRST IS WHEN WE'RE TRYING TO UNDERSTAND EMPLOYMENT, EVEN TRYING TO WRAP OUR HEAD AROUND WHAT ARE THE RATES OF EMPLOYMENT, IS A LITTLE BIT MORE COMPLICATED THAN WE WOULD THINK AS IS I THINK MOST THINGS IN SCIENCE. FROM THINK JOHN BROUGHT THIS UP NICELY EARLIER IN THE PRESENTATION AND I BROUGHT OUT A COUPLE OF EXAMPLES OF STUDIES THAT SHOW HOW RATES OF EMPLOYMENT DIFFER DEPENDING WHO YOUR SAMPLE IS AND HOW YOU ASK THE QUESTIONS. SO ONE OF THE EARLIER STUDY LOOK AT THIS WAS PAT HOLLAND IN THE UK, FOLLOW-UP STUDY OF ADULTS WITH IQS GREATER THAN -- EQUAL TO 50 AND AROUND 30% WERE EMPLOYED, ADULTS WITH AUTISM. NICK FAIRLY HAD A UTAH COHORT, THESE ARE ADULTS WITH AVERAGE OR ABOVE IQs, CURRENT WORK AND FOUND THAT 60% ADULTS IN HER COHORT WERE CURRENTLY EMPLOY. DR. MALIK AND I LOOKED AT THIS IN A REEL THE AVENUELY LARGE SAMPLE OF 300 ADULTS WITH ALLTISM, 70% WHOM HAD INTELLECTUAL DISABILITY. WE FOUND 30% ADULTS WORKING IN THE COMMUNITY OR IN COLLEGE, THAT SAME YEAR PAUL FROM DREXEL LOOKED AT RATES OF WORK OR POST SECONDARY EDUCATION FOR YOUNG ADULTS WHO EXITED THE SCHOOL SYSTEM OR IDENTIFIED THROUGH SPECIAL EDUCATION WITH AUTISM, THEY FOUND OVER 60% WORKING OR IN COLLEGE BUT THEY LOOK AT THINGS DIFFERENTLY, THIS IS THE RATE OF ADULTS WHO EVER WORKED FORD PAY OR EVER BEEN IN COLLEGE AT ANY TIME OVER ABOUT FOUR YEARS AFTER HIGH SCHOOL SO IMPORTANT DATA BUT A DIFFERENT QUESTION. THAN CURRENT RATES OF EMPLOYMENT. CURRENT EMPLOY SPECIFICALLY THE NEXT YEAR, THEY FOUND 30% YOUNG ADULTS WORKING. THESE ADULTS ON AVERAGE WERE FOUR OUT OF HIGH SCHOOL AND DIDN'T LOOK AT POST SECONDARY EDUCATION IN THIS ANALYSIS SO IT UNDERESTIMATES THE RATE OF YOUNG ADULTS ENGAGED IN WORK SECONDARY EDUCATION. FROM UTAH WENT AND LOOKED AT ADULTS IN MID 30s IN UTAH THEY HAD A BROADER SAMPLE THIS TIME, ABOUT 75% ADULTS INTEL HECK ACTUAL DISABILITY AND FOUND 30% CURRENTLY WORKING, WE HAD THE OPPORTUNITY TO WORK WITH INDIVIDUALS FROM THE INTERACTIVE AUTISM NETWORK PROJECT IAN. THIS IS A SAMPLE OF SELF-REPORTING ADULTS WHO FILLED OUT INTERNET SURVEY AND OVER 60% WORKING OR IN COLLEGE AND NATIONAL CORE INDICATOR SURVEY IS A SAMPLE OF ADULTS WITH DISABILITIES RECEIVING SERVICES. AUTISM BEING ONE GROUP OF ADULTS IN THAT SURVEY AND FOUND UNDER 20% ADULTS ARE EMPLOYED SO THE TAKE HOME FOR THIS IS THAT DEPENDING WHO YOUR SAMPLE IS AND HOW YOU CAN ASK THE QUESTION, THE EMPLOYMENT RATES ARE ALL OVER THE PLACE FROM 19 PERCENT TO OVER 60%. SO I DON'T KNOW THAT WE HAVE A RAY I -- REALLY GOOD HANDLE IN TERMS OF POPULATION OF AUTISM WHAT IS RATE OF EMPLOYMENT BUT WE CAN AGREE EMPLOYMENT IS A SIGNIFICANT ISSUE FOR YOUNG ADULTS ON AUTISM SPECTRUM, SOMETHING WE SEE A LOT IN THE PEOPLE THAT COME TO OUR STUDIES AND ALL THE PANELISTS PROBABLY AGREE WITH THIS, IS THAT WE ALSO SEE A LOT OF UNDEREMPLOYMENT. WE DON'T HAVE A TON OF GOOD DATA ON THIS BUT WE SEE A LOT OF ADULTS WORKING FEWER HOURS THAN THEY LIKE AND WORKING AT JOBS THAT ARE LESS SKILLED, THAN WHAT THEY WOULD BE CAPABLE OF SO UNEMPLOYMENT IS ONE ISSUE, WE ALSO SEE A LOT OF UNDEREMPLOYMENT. YOU HAVE HEARD IN THIS COMMITTEE ABOUT A NUMBER OF REALLY PROMISING PROGRAMS THAT HAVE BEEN DEVELOPED BY INDIVIDUALS IN GROUPS TO IMPROVE EMPLOYMENT. OPPORTUNITIES FOR INDIVIDUALS ON THE AUTISM SPECTRUM, WHETHER PROVIDING SKILLS TO GET PEOPLE IN TO EMPLOYMENT. I THINK IT WAS LAST YEAR AT THIS TIME WE HEARD FROM THREE PANELISTS AND PRESENTATIONS ABOUT SOME REALLY PROMISING AND INNOVATIVE PROGRAMS, OUR RESEARCH HAS LAGGED BEHIND, AS RESEARCHERS WE HAVE NOT BEEN PARTICULARLY HELPFUL TO THESE PROGRAMS, IN TERMS OF GENERATING EVIDENCE BASED KNOCK THAT ENTREPRENEURS AND PEOPLE IN THE COMMUNITY CAN USE WHEN DESIGNING PROGRAMS THAT WILL BE MAXIMALLY EFFECTIVE IN IMPROVING EMPLOYMENT FOR INDIVIDUALS ON THE AUTISM SPECTRUM SO WITH THAT IN MIND AND KEEPING THAT I'M GOING TO TALK A LITTLE BIT ABOUT SOME OF THE WORK THAT WE HAVE BEEN DOING OVER LAST SEVEN, EIGHT YEARS OR SO AND HIGHLIGHTING WHAT ARE THE IMPORTANT DIRECTIONS FOR FUTURE RESEARCH TO UNDERSTAND HOW TO BETTER SUPPORT INDIVIDUALS ON THE AUTISM SPECTRUM AND THINGS HIGHLIGHTING HERE ARE THINGS THAT WILL BEGIN TO BE ADDRESSED IN THE REST OF THE PRESENTATIONS COMING UP IN THIS PANEL SO I WILL TALK ABOUT THE IMPORTANCE OF PROMOTING STABILITY IN EMPLOYMENT, NOT JUST TALKING PEOPLE GET JOBS BUT HELPING KEEP THEM ONCE THEY GET THEM. AND I'M GOING TO TALK ABOUT HOW IMPORTANT IT IS TO AT LEAST UNDERSTAND AND FOCUS ON THE NEEDS OF DIFFERENT SUBGROUPS. SO OUR FIRST PASS IN OUR RESEARCH TRYING TO UNDERSTAND HOW EMPLOYMENT CHANGES OVER TIME, WAS LOOKING AT HOW LOCATIONAL ACTIVITIES CHANGE EVERY TEN YEARS. WE DID ANALYSES BACK IN 2012, AT THAT TIME THERE WERE AT LEAST TO MY KNOWLEDGE, NO STUDIES THAT LOOKED HOW EMPLOYMENT CHANGED OVER TIME SO THERE WERE QUITE A FEW STUDIES AT THAT POINT THAT LOOKED AT EMPLOYMENT AT POINT ESTIMATES OF DIFFERENT RATES BUT IN TERMS OF UNDERSTANDING WHETHER INDIVIDUAL ON THE AUTISM SPECTRUM WERE UPWARD MOBILE TRAJECTORIES OVER TIME, FLAT, INSTABILITY, WE REALLY HAD ALMOST NO INFORMATION. SO I HAD BEEN WORKING WITH MY POST FOURTH QUARTER ON HER STUDY OF 400 FAMILIES AND ADULTS ON AUTISM SPECTRUM, WE HAD DATA COLLECTED OVER TEN YEARS IN THE LIVES OF EACH FAMILY AN OVER 150 ADULTS OUT OF HIGH SCHOOL AT START OF THE STUDY. SO WE FOLLOWED THEM OVER TIME AND LOOK AT THE DATA AND SEE HOW DOES INDEPENDENCE AND VOCATIONAL ACTIVITIES CHANGE OVER TIME FOR THESE ADULTS. WE USE MULTI-LEVEL MODELS AND WHAT WE FOUND IS THAT ON AVERAGE VOCATIONAL ACTIVITIES WERE BECOMING LESS INDEPENDENT OVER TEN YEAR PERIOD. NOW ANIMAL T MODEL ANALYSES WE LOOK TO SEE CHARACTERISTICS THAT PREDICT WHERE SOMEBODY STARTS IN TERMS OF HOW INDEPENDENT THEY WORK AND CHARACTERISTICS THAT PREDICT CHANGE OVER TIME. IN TERMS OF HOW INDEPENDENTLY SOMEBODY IS WORKING. IN PREDICTORS OF INITIAL STATUS WE FOUND WHAT I CALL USUAL SUSPECTS, THE CHARACTERS THAT PREDICT EMPLOYMENT, INDEPENDENCE AND ALMOST EVERY STUDY THAT LOOKS AT EMPLOYMENT OR INDEPENDENCE AND AUTISM. SO ONE WAS WHETHER OR NOT THE ADULT HAD INTELLECTUAL DISABILITY, HUMAN ADAPTIVE BEHAVIOR SEPARATELY BUT THESE ARE CHARACTERISTICS RELATED TO EMPLOYMENT AND INDEPENDENCE AND VARIABLES LIKE HOW SEVERE THE AUTISM IS, AND WHAT OTHER BEHAVIOR PROBLEMS MIGHT BE PRESENT AND THAT'S WHAT WHAT WE FOUND IN ANALYSES TOO. THESE FACTORS WERE HIGHLY RELATED TO HOW INDEPENDENT SOMEBODY WAS WORKING AT START OF THE STUDY. NOT RELATED TO HOW INDEPENDENCE CHANGED OVER TIME AND THEY ONLY FOUND ONE FACTOR RELATED TO INDEPENDENCE, THE SEX OF PERSON WITH AUTISM. WHAT WE FOUND IN THE STUDY WAS MALES ON THE SPECTRUM WERE STABLE IN TERMS HOW INDEPENDENTLY THEY WERE WORKING OVER TIME, BUT THE FEMALES WERE SIGNIFICANTLY DECLINING IN THE INDEPENDENCE OF THEIR JOBS OVER TIME. THIS WAS A SURPRISE TO US, WE PUT THIS IN AS CONTROL VARIABLE BECAUSE WE SHOULD BE ACCOUNTING FOR SEX AND GENDER AND THAT WAS A FACTOR THAT PREDICTED CHANGE OVER TIME. IT'S IMPORTANT TO NOTE NO DIFFERENCES BETWEEN THE GROUPS AT START OF STUDY AND THE MALE AND FEMALELESS IN THE SAMPLE WERE BASICALLY IDENTICAL ON ALL BEHAVIORAL VARIABLES WE LOOK AT AND FAMILY VARIABLES. SO IT'S NOT AS IF THEY WERE COMING TO THE TABLE WITH SOMETHING DIFFERENT. ALSO NONE OF THE FEMALES WERE MARRIED SOD THIS DOESN'T SEEM ACCOUNTED FR BUT PEOPLE STAYING TO TAKE CARE OF CHILDREN OR FAMILY. SO THIS WAS THE FIRST FINDING HERE. WE THOUGHT INTERESTING AND UNEXPECTED TESTIMONY OTHER THING IS 80% HAD INTELLECTUAL DISABILITY. THE LAST TIME POINT OF DATA IN THIS ANALYSIS WAS 2010 AND MANY OF THESE ADULTS WERE PRIMARILY SPENDING THEIR DAYS IN SHELTERED SETTINGS. SUCH AS ADULT DAY PROGRAMS, SHELTERED WORKSHOPS SO WE WERE INTEREST IN WHAT KINDS OF PATTERNS OF STABILITY WE MIGHT SEE IF WE LOOK AT ADULTS MORE LIKELY TO BE SPENDING THEIR TIME OUT OF THE COMMUNITY. WE DID ANOTHER SET OF ANALYSES, USING THE SAME LARGER SET OF DATA THAT DID NOT HAVE INTELLECTUAL DISABILITY AND LOOK AT THEIR PATTERNS OF EMPLOYMENT OVER TIME AT SEVEN TIMES POINTS UP TO 12 YEARS GROUPED INTO THREE CATEGORIES, AT EVERY TIME POINT IN THE STUDY THEY WERE WORKING IN THE COMMUNITY OR IN COLLEGE AND THAT WAS 25% THAT FELL THERE. THE NEXT GROUP WERE ADULTS WHO SOMETIMES WE SAW THEY WERE WORKING IN THE COMMUNE THE ONCOLOGY AND SOMETIMES THEY WEREN'T. FROM THIS WAS OUR SOMETIMES EMPLOYED GROUP. THAT WAS ABOUT 42% OF THE SAMPLE, THE LAST GROUP WHERE ADULTS WHO AT NONE OF THE TIME POINTS WE SAW THEY WERE WORKING OR IN COLLEGE. THAT WAS A THIRD OF THE SAMPLE. ED FROM SO PUT GREEN AND YELLOW BAARS TOGETHER, WHAT THIS SUGGESTS TO US IS WORKING IN THE COMMUNITY OR GOING TO COLLEGE IS A FAIRLY COMMON OCCURRENCE ABOUT TWO THIRD DOING THIS AT SOME POINT OF THE ADULTS IN THE SAMPLE, BUTS ISENTLY PARTICIPATING IN THOSE ACTIVITIES WAS RELATIVELY RARE. SO THE NEXT THING WE WANTED TO LOOK AT THEN IS WELL WHAT DISTINGUISH BETWEEN THOSE ADULTS CONSISTENTLY PARTICIPATING IN ACTIVITIES AND THOSE SOMETIMES PARTICIPATING IN ACTIVITIES. FEW ONLY FACTOR THAT DISTINGUISH BETWEEN THOSE GROUPS IS SEX OF THE ADULT ON THE AUTISM SPECTRUM, WE FOUND 30% OF THE MEN CONSISTENTLY WORKING OR IN COLLEGE AND NONE OF THE WOMEN WERE IN OUR CONSISTENT CATEGORY. IT WAS A SAMPLE OF WOMEN, ONLY SIX -- 473 TOTAL IT WAS JUST UNDER 20 WOMEN BUT NOT ONE FELL IN THE CONSISTENT GROUP. WE'LL COME BACK TO THAT IN A FEW MINUTES HERE. BOTH ANALYSES ACTUALLY IN THIS DATA SET WE ARE LOOKING AT STABILITY AND TYPE OF ACTIVITY, BUT NOT IN ACTIVITIES SPECIFICALLY. WE DIDN'T HAVE THE LEVEL OF DATA NEEDED TO LOOK AT SPECIFIC ACTIVITY SO FOR EXAMPLE, IF SOMEBODY WAS WORKING IN A JOB IN THE COMMUNITY, THEY GOT FIRED THAT THAT JOB AND NEXT TIM POINT WORKING IN A DIFFERENT JOB IN THE COMMUNITY, THEY WOULD BE IN OUR STABLE GROUP BECAUSE THEY HAD JOBS IN THE COMMUNITY AT BOTH TIME POINTS BUT THERE IS A LOT STABLE ABOUT THAT PATTERN P WE FOLLOWED THIS UP THIS IS DATA COLLECTED AS PART OF MY CAREER DEVELOPMENT AWARD THAT I HAD A SAMPLE OF FAMILIES OF YOUNG ADULT ON THE AUTISM SPECTRUM AND WE COLLECTED DATA THREE TIME POINT SO WE CHECKED DATA IN THEIR LAST YEAR HIGH SCHOOL AND TWO TIME POINTS AFTER HIGH SCHOOL AND BECAUSE IT WAS SMALL SAMPLE WE CAN COLLECT REALLY IN DEPTH DETAIL ABOUT A WHOLE LOT OF THINGS. ONE OF THEM BEING WHAT THEY WERE DOING WITH THEIR DAYS AFTER LEAVING HIGH SCHOOL. WE TOOK THAT DATA AND PUT THE ADULTS INTO A DISRUPTION OR NO DISRUPTION GROUP. WE WANTED TO DISTINGUISH INSTABILITY FROM DISRUPTION BECAUSE SOME INSTABILITY REFLECTS UPWARD MOBILITY SO IF SOMEONE GOES FROM TWO YEAR TO FOUR YEAR COLLEGE FOR EXAMPLE THAT'S A CHANGE IN ACTIVITY BUT THAT'S DIFFERENT THAN SOMEBODY GETTING FIREDED FROM A JOB. AND WE HAD THE DATA TO BE ABLE TO DISTINGUISH THAT. WHAT WE FOUND OF THIS RELATIVELY SMALL SAMPLE, HALF THE ADULTS EXPERIENCED A DISRUPTION WITHIN THAT TWO AND A HALF YEARS, LIKE GETTING FIRED FROM A JOB, NEEDING TO LEAVE A JOB ONE OTHERWISE WOULD HAVE LIKED BECAUSE OF PROBLEMS WITH COWORKERS, HAVING TO DROP OUT OF COLLEGE PROGRAM, ET CETERA. SO THEN YOU LOOK AT WHAT ARE THE CHARACTERISTICS THAT WE MEASURED IN HIGH SCHOOL, SO BEFORE THEY LEFT SCHOOL AND BEFORE THEY HAD DISRUPTION, THAT MIGHT HELP US DISTINGUISH BETWEEN THOSE WHO EXPERIENCE DISRUPTION AND THOSE WHO DON'T. AND THE USUAL CAST OF CHARACTERS DIDN'T DISTINGUISH HERE SO WHEN WE LOOK AT IQ OF THE YOUNG ADULT, ADAPTIVE BEHAVIOR, AUTISM SEVERITY BEHAVIOR PROBLEMS THOSE DIDN'T DISTINGUISH THOSE WHO DID AND DIDN'T. AND THE EFFECT SIZE IS SMALL. THE ONLY FACTORS OUT OF THIS ANALYSIS WERE INDICATORS OF FAMILY FUNCTIONING AND MENTAL HEALTH. THIS WAS DEPRESSIVE SYMPTOMS ANXIETY AND QUALITY OF LIFE. THIS WAS A LITTLE BIT -- IN THE ADULT RESEARCH WORLD I FEEL LIKE WE GET FINDINGS THAT ARE SURPRISING AND SO LITTLE IS KNOWN AND WE SPENT TIME TALKING WITH FAMILIES, AFTER WE GOT THESE FINDINGS, AND I THINK WHAT MIGHT BE GOING ON HERE IS THAT FAMILIES ARE OFTEN TIMES WORKING VERY, VERY HARD TO SUPPORT THEIR SONS AND DAUGHTERS AFTER THEY LEAVE HIGH SCHOOL. FAMILIES ARE NOT GETTING THE SERVICES AND SUPPORTS THAT THEY NEED AND IN THE ABSENCE OF THAT, OFTEN TIMES PARENTS ARE STEPPING IN. AND FILLING IN THE GAPS AND SCAFFOLDING AND SUPPORTING THEIR SONS AND DAUGHTERS, NOT IN EVERY CASE BUT IN A LOT OF CASES. I CAN TELL YOU LOTS OF EXAMPLES FAMILIES DOING THAT. IF FAMILIES ARE STRUGGLING THEY MAYBE LESS EFFECTIVE THE DO THAT. THAT'S WHAT WE THINK IS GOING ON, WE HOPE TO TEST OUT IN A LARGER SAMPLE AND MAKE SURE'S NOT SOMETHING WE SEE IN SMALL SAMPLE HERE. OVERALL WHAT THIS TELLS US IS PROBABLY THE MOST IMPORTANT FOR THIS DISCUSSION IS THAT GETTING A JOB OR GETTING INTO COLLEGE, THAT'S HALF THE BATTLE. MAYBE LESS THAN HALF THE BATTLE. BUT BEING SUCCESSFUL IN THAT POSITION ONCE YOU GET THERE, IS A REAL SIGNIFICANT CHALLENGE AND THE OTHER PRESENTATIONS THAT WE'RE GOING TO HEAR FROM TODAY THERE'S GOING TO BE A LOT OF DISCUSSION REALLY HELPING PEOPLE BECOME SUCCESSFUL ONCE IN THOSE POSITIONS. AND THE OTHER I THINK IMPORTANT TAKE HOME FROM THIS IS THAT IF IN FACT THIS DATA IS REPLICATED AND IS TRUE AND IF FACTORS THAT PREDICT SOMEONE KEEPING A JOB ARE DIFFERENT THAN THE FACTORS THAT PREDICT THEM GETTING A JOB, THAT'S SOMETHING WE NEED TO UNDERSTAND. WE'RE NOT GOING PEOPLE FAVORS BY HELPING THEM GET A JOB AND GET INTO THE WORKPLACE BUT NOT KNOWING HOW WHO HELP THEM BE SUCCESSFUL ONCE THEY GET THERE. LAST THIS CAN I'LL TALK ABOUT IS IMPORTANCE OF UNDERSTANDING THE NEEDS AN SUPPORTS OF SUBGROUPS, THIS HAS COME UP TODAY AND CERTAINLY OVER THE COURSE OF THE COMMITTEE. THIS HAS COME UP MANY TIMES, RIGHT? BUT TALKING ABOUT AUTISM WE AREN'T TALKING ABOUT SUCH EXTREME HETEROGENEITY, WE HAVE TO TAKE INTO ACCOUNT IN OUR RESEARCH IN IN OUR SERVICES AND IN OUR PERHAPS SO ONE OBVIOUS FACTOR OR ASPECT OF HETEROGENEITY THAT COMES UP A LOT IS COGNITIVE FUNCTIONING AND IN TERMS OF UNDERSTANDING REALLY AT THE FRONT END OF UNDERSTANDING HOW MIGHT THE NEEDS DIFFER FOR PEOPLE ALONG THE RANGE OF COGNITIVE FUNCTIONK, HOW SHOULD OUTCOME DIFFER P SHOULD THEY DIFFER IN WHAT WE'RE THINKING ABOUT, THE SAME, GOING BACK TO THIS DISCUSSION HOW TO TAKE ACCOUNT OF PROBLEMS AN HETERO GENERAL NAYTY WHEN WE DO THAT. THING WE'RE PURSUING IS HOW MIGHT NEEDS AND SUPPORTS BE DIFFERENT FOR PEOPLE WHO DIFFERENT SEX AND GENDERS. AGAIN WHAT WE HAVE FOUND IN THESE ANALYSES IS WOMEN ON THE AUTISM SPECTRUM SEEM TO OBTAIN VOCATIONAL AND EDUCATION POSITIONS AT THE SAME RATE AS MEN, BUT HAVE A DIFFICULT TIME MAINTAINING THOSE POSITIONS OVER TIME. WE HAVE ANALYSES WITH THE DATA SETS TRYING TO FLESH OUT WHY THAT MIGHT BE AND DEVELOP SOME HYPOTHESES AROUND THAT. AND OF COURSE THOSE ARE TWO ASPECTS OF HETEROGENEITY, THAT'S OTHER BEHAVIORAL FAMILY VARIABLES THAT IMPACT SUPPORTS PEOPLE NEED IN EMPLOYMENT, A HANDFUL OF BEHAVIOR SOCIAL CO-OKAY RENT AND PSYCHOSECRETARY MENTAL HEALTH PROBLEMS AND ON AND ON AND ON. AND WE ARE REALLY AT THE FRONT ENDOF UNDERSTANDING THIS. WHAT WE DO DO KNOW THOUGH IS -- WHAT DID I DO? THAT IS EASY. WHAT WE KNOW IS TO BEST SUPPORT EMPLOYMENT NEEDS TO BE MULTIFACETED PROCESS. WE'LL PROBABLY NEED TO BE THINKING ABOUT HOW TO BETTER SUPPORT INDIVIDUALS AND THIS CAN BE THINGS LIKE IT DOESN'T HAVE TO BE CHANGING THE AUTISM PER SE, BUT IT CAN BE THINGS LIKE SUPPORTING PEOPLE FOR DATA LIVING SKILLS, MITT GAILING THE IMPACT OF MEN -- MITIGATING IMPACT OF MENTAL HEALTH SYSTEMS, WORKING ON SOFT SKILLS, JOB SKILLS, THINGS OF THAT SORT. THE WORK IN OUR GROUP SUGGEST WE CAN REALLY HELP SUPPORT EMPLOYMENT BY BETTER SUPPORTING FAMILIES. CERTAINLY BETTER SUPPORTING EMPLOYERS AND WORKPLACES TO BETTER EMPLOY AND BE MORE EFFECTIVE EMPLOYING PEOPLE ON AUTISM SPECTRUM MORE HELPFUL AND MAKING SERVICES MORE EFFECTIVE SUPPORTING PEOPLE. THESE ARE ALL THEMES COMING UP IN THE PRESENTATIONS WE'LL BE HEARING FROM. I WILL INTRODUCE SPEAKERS AND WE'LL GO FROM THERE. FIRST WE'LL HAVE DR. PAUL WEHMAN, PROFESSOR PHYSICAL MEDICINE AND REHABILITATION AT VIRGINIA COMMONWEALTH UNIVERSITY, DIRECTOR OF VCU AND HE'LL BE TALKING ABOUT AUTISM AND RESULTS RANDOMIZED CONTROL TRIAL. NEXT IS ER,K CARTER, CORNELIUS VANDERBILT PROFESSOR DEPARTMENT OF SPECIAL EDUCATION VANDERBILT UNIVERSITY, HIS OFFICE IS ONE BELOW MINE IN THE SAME BUILDING. THAT'S HOW IT WORKS SOMETIMES I THINK. AND HE'LL TALK ABOUT TENNESSEE WORKS CLAN RATIVE, LESSONS LEARNED ON EMPLOYMENT OUTCOMES WITH DISABILITIES INCLUDING AUTISM AND THEN WE'LL HEAR FROM HALA ANNABI, ASSOCIATE PROFESSOR UNIVERSITY OF WASHINGTON TALKING AUTISM READY WORKPLACES CREATING AND SCALING AUTISM HIRING INITIATIVES. NEXT WE HAVE PAUL. >> GOOD AFTERNOON, GLAD TO BE HERE, TO SHARE OUR WORK. JULIE COVERED A LOT OF THINGS WE WOULD DO QUICKLY SO I THINK I'M GOING TO BE ABLE TO JUMP VERY RAPIDLY, PROBABLY IN SOME OF THE THINGS THAT MY WIFE SAYS THAT PEOPLE WOULD PREFER TO WATCH THAN WORDS AND THAT IS VIDEOS. LET'S SEE HERE. SO WE HAVE DONE THAT ALREADY. IN FACT WE HAVE DONE A TREMENDOUS JOB IN THE LAST TEN YEARS OF ESSENTIALLY DOCUMENTING THE PROBLEM AND ALMOST ADMIREING WHAT THE PROBLEM IS. AND WE'RE NOW MOVING INTO AN ERA TRYING TO FIGURE OUT HOW CAN WE HELP PEOPLE WHERE THEY ARE, CURRENTLY AT TO HAVE A CAREER, BE EMPLOYED, BE LESS UNDEREMPLOYED AND BE MORE INDEPENDENT IN A CAREER. WE THINK THE KEYS TO CHANGING THIS IS CLEAR TO FOCUS ON PEOPLE STRENGTHS, STRENGTHS BASED APPROACH OPPOSED TO DEFICIT BASED APPROACH THE LOOK AT INTERESTS AN PREFERENCES, EVERY TIME YOU WORK WITH DIFFERENCE PEOPLE WITH AUTISM YOU LEARN SOMETHING NEW DIFFERENTLY. INDIVIDUALS HAVE SO MANY GIFTS, IT'S EXTRAORDINARY. THE MORE TIME YOU SPEND WORKING WITH PEOPLE, WITH AUTISM, AUTISM LIKE CHARACTERISTICS, THE MORE YOU REALIZE WHAT THE STRENGTH AND THE POWER IS THAT THEY HAVE AND THEY JUST ARE BEING GROSSLY UNDERUTILIZED. IF YOU ARE LOOKING AT A GOAL OF EDUCATION YOU ARE LOOKING AT A PLACE TO CALL HOME, PLACES TO GO, PEOPLE TO SEE,, HOW DO YOU GET THAT? HOW DO YOU GET TO THAT LIFE? YOU SHALL HAVE A REAL JOB. A REAL JOB IS WORKING WITH PEOPLE WITHOUT KISS DISABILITIES BEING INTEGRATED AND IMMERSED IN THE WORKPLACE NOT INTO SHELTERED WORK SHOPS OR DAY CARE CENTERS. THE PLACES U.S. DEPARTMENT OF JUSTICE IS NOW CLOSING. COURTESY OF TITLE ONE AMERICANS WITH DISABILITIES ACT. UNFORTUNATELY MOST FAMILIES OF KIDS WITH AUTISM DO NOT WANT TO BE IN SEGREGATED PROGRAMS. WHAT IS ONE EVIDENCE BASED PATHWAY, TO COMPETITIVE EMPLOYMENT. REAL WORK FOR REAL PAY. IT WAS A QUESTION WE ASK, HOW CAN WE FIGURE OUT WHAT WE CAN DO THAT WOULD BE DIFFERENT AND WOULD BE REVERSE THE PARADIGM THAT JULIE HAS JUST DESCRIBED. AND NEW WE COULDN'T SOLVE EVERYTHING SO WE SAID WELL, LET'S TRY ONE THING WE THINK MIGHT WORK. WITH THE COURTESY AND SUPPORT OF NATIONAL INSTITUTE OF DISABILITY AND AT THAT TIME REHABILITATION RESEARCH, -- IS HEAR TODAY LESLIE CAP PLAN, MANY OF YOU KNOW HER I'M SURE. WE USE AN INTERNSHIP BASED MODEL. BASED ON A PROGRAM OUT OF CINCINNATI CHILDREN'S HOSPITAL CALLED PROJECT SEARCH, WE HAVE SINCE ADAPTED IT BUT IT IS A MODEL THAT REQUIRED # HUNDRED THOUSANDS -- 900 HOURS OF WORK FROM LABOR DAY TO ME MEMORIAL DAY FOUR STUDENTS ENTERED IN A PROGRAM AND RECEIVED TRAINING AT A LOCAL HOSPITAL THE FIRST STUDY WAS A PILOT RCT. HOWEVER, BEFORE GOING INTO THAT STUDY, I WANT TO SHOW YOU A PICTURE OF THE TYPE OF PEOPLE THAT WERE WORKING WITHIN ONE INDIVIDUAL SPECIFICALLY. IT'S FOUR MINUTES LONG. THIS IS DYLAN. >> WE'RE GETTING VICTIMS LIKE DYLAN FROM THE SCHOOL SYSTEM, TRANSITIONING STUDENTS SO TRANSSINCING FROM -- TRANSITIONING FROM SCHOOL TO WORK AND WHAT WE HAD THE EXPERIENCE OF DOING WITH THEM IS GOING THROUGH 10 TO 12 WEEK LONG INTERNSHIPS, BASICALLY JUST ASSESSMENT EXPERIENCE ON STEROIDS SO EACH INTERNSHIP EXPERIENCE FOR A LOT LONGER. HE WAS IN -- HE HAD THREE EXPERIENCES ONE LABOR AN DELIVERY UNIT ONE IN THE LABORATORY SERVICES DEPARTMENT AND ONE IN THE EMERGENCY DEPARTMENT. IT TOOK ALL THREE INTERNSHIPS FOR US TO FIND THE RIGHT TICKET FOR DYLAN. >> >> SKILL WE CALL PILL PACKING WHERE WE TAKE INDIVIDUALIZED INSTRUMENTS AND STERILIZE THEM SEPARATELY. FROM A TREE VERSION WITH MULTIPLE INSTRUMENTS, AGAIN, VERY TIME CONSUMING TASK, IT HAS TO BE DONE SPECIFICALLY IN A CERTAIN WAY. >> DYLAN HAS SEVERAL TYPES OF SUPPORTS HE USE WHILE HE'S WORKING AND THEY HAVE BEEN ONGOING AS HIS NEEDS HAVE CHANGED AND AS TASKS HAVE CHANGED BENOTICE DIFFERENT BEHAVIORS BUT THIS IS ONE WE USE TO TRY TO BOOST A LOT OF TIME WORKING ON EMOTIONAL IDENTIFICATION FOR DYLAN AND HOW HE'S FEELING THAT DAY, WHAT WE LEARNED THROUGH THIS PROCESS IF HE COMES IN ON A GOOD NOTE AND START ON TIME HE'S USUAL I GOOD THROUGHOUT THE DAY, AS RETURNING TO PAY SUPPORT TRYING TO IDENTIFY WHAT POINT IN TIME WE NEEDED TO BE CALLED IN FROM STAFF IN ORDER TO COME AND PROVIDE SUPPORT TO GET HIM STARTED SO THIS IS THE VOLCANO SCALE DYLAN USES AND HE FILLED THIS OUT WITH SCHOOL STAFF AND WE DID IT AGAIN HERE, THESE ARE ADDITIONAL VOLUME SUPPORTS FOR HIM. >> WE CAN POINT AND SAY OKAY, YOU'RE WAY UP HERE ON VOLUME WHERE YOU NEED TO BE DOWN HERE AND THEN BY SHOWING THAT WE CAN ASK HIM WHERE ARE YOU RIGHT NOW. HE'LL HEAR THAT AND THEN FOLLOW THROUGH BY POINTING ON THE CHART. IT'S PRETTY INTERESTING TO SEE, SOMETIMES NOT AWARE, WHERE HIS VOLUME IS S. WE DON'T KNOW IF HE IS AWARE HE'S DOING IT OUTLOUD. >> HE DOESN'T USE THESE NEARLY AS MUCH BECAUSE WE'RE ABLE TO FADE SUPPORTS BUT WE KEEP THEM THERE IN CASE A NEW WORKER COMES ON AN WANTS TO LEARN MORE ABOUT DYLAN. INITIALLY ONE JOB FILLS OUT WITH HIM, HE GETS PLUS OR MINUS IF HE COMPLETED THE STEP AND HE KEEPS TRACK HIMSELF, HE HAD A HAIR TIME STAY FOCUSED HE DID STEMMING SO HE REALLY LIKES DEEP PRESSURE SO PRESS INTO FACE, SQUEEZE HIS BODY, JUMPING AROUND IF HE WAS AGITATED AND THE THINGS THAT WOULD AGITATE HIM WERE USUALLY TOO MUCH INSTRUCTION FROM US AND TOO MUCH CORRECTION, HI DOES LIKE TO WORK BY HIMSELF SO YOU CAN SEE THERE'S A DISKETTE WHERE HE WANTED TO BE INDEPENDENT BUT HAVING HARD TIME FOCUSING AND STAYING ON TRACK. >> SOMETIMES IT CAN INTERFERE WITH HIS WORK PACE AND HIS RHYTHM, BUT THE VOLUME IS REALLY WHAT'S MORE DISRUPTIVE TO THE WORK ENVIRONMENT. >> THERE ARE INDIVIDUAL WORKSTATIONS SO DYLAN WOULDN'T BE WORKING CLOSE TO SOMEBODY ELSE, HE HAD HIS OWN SPACE WHERE IF HE NEEDED TO CALM HIMSELF DOWN, DO SOME BOUNCING KIND OF PRESSING ON HIMSELF, THAT IT WAS APPROPRIATE FOR HIM TO DO SO AND HE WASN'T GOING TO INTERFERE WITH SOMEBODY ELSE'S WORK. >> IF YOU CAN MATCH HIM TO AN ENVIRONMENT THAT ALLOWS HIM TO DO STEMMING, TAKE SOME TIME TO KIND OF PROCESS THINGS, THEN AS FAR AS GETTING THE WORK DONE, AS FAR AS COUNTING AND DOING THOSE SORTS OF THINGS HE'S GOING TO GET IT DONE. >> 1400. >> SO ONE REASON THAT I WANTED TO USE THIS VIDEO IS BECAUSE WHEN WE STARTED THIS WE NOT ONLY WANTED TO PECK A PATHWAY LIKE INTERNSHIP THAT IS COMMON WHETHER YOU ARE A STUDENT TEACHER OR A NURSE OR AN OT, PEOPLE GET INTERNSHIPS, THEY UNDERSTAND THAT AS A CONCEPT, THAT WOULD BE A PRE-CURSOR, CAN I GET THE TIME BACK ON HERE? WOULD BE A PRE-CURSOR TO ACTUAL EMPLOYMENT. AND I NODE TWO MINUTES OR SOMETHING BEFOREHAND BECAUSE I'LL GET CARRIED AWAY. I THINK WATCHING EXACTLY WHAT THE EMPLOYMENT SPECIALISTS WHO ARE TRAINED IN APPLIED BEHAVIOR ANALYSIS IN JOB RESTRUCTURING AND SUPPORT EMPLOYMENT BY WATCHING IT IT'S MUCH BETTER STORY THAN ME TRYING TO PUT IT UP ON A SLIDE WITH BUNCH OF WORDS. SO LET'S JUST GO AHEAD AND TAKE A LOOK TO SEE WHAT HAPPENED BETWEEN 2009 TO 24013 WITH THE 54 PEOPLE -- 2014, WITH THE 54 PEEP ENROLLED OVER FOUR YEAR TIME PERIOD IN RICHMOND, VIRGINIA. PARDON ME. I'M SORRY. SO WE STARTED OUT WITH A LARGE NUMBER OF CONTROLS, WE LOSE CONTROLS OF COURSE EACH YEAR BECAUSE WHAT HAPPENS IS THAT FAMILIES BECOME FRUSTRATED AND AS EACH YEAR WENT BY MORE FAMILIES WANTED TO PARTICIPATE AND WERE UNABLE TO GET IN BECAUSE WE WERE RANDOMIZING. THEY ALL STARTED AT THE SAME -- AT THE BEGINNING. AND THEN IF YOU LOOK AT THE 74, 74% AT GRADUATION WERE OFFER JOBS. REMEMBER THIS IS ONE HOSPITAL. AND THEY ALL LOVED HAVING THESE FOLKS THE MAJORITY WHO WERE NON-VERBAL, LESS THAN SECOND GRADE READING EDUCATION, ALL ENJOYED HAVING THEM AS INTERNS AND THEY WERE FIGHTING OVER WHO WAS GOING TO BE HIRED THERE. AT THREE MONTHS IT WAS 90% EMPLOYED, AND 12 MONTHS LATER, 87% EMPLOYED. ATTENTION RATES WERE ALL 12 TO 36 MONTHS LATER ON THIS GROUP. SO WE KNEW WE WERE ON TO SOMETHING HERE. IT WAS A GOOD DEAL. WE SAID TO OURSELF IS THIS BECAUSE IT'S A NICE HOSPITAL? AND THEY FEEL SORRY FOR PEOPLE WITH AUTISM. WE WENT BACK TO NDLE RAND WE SAID LOOK WE WOULD LIKE TO DO ANOTHER STUDY. THAT WOULD BE SOMETHING MORE OF AN EFFICACY STUDY TAKING WHAT WE HAVE LEARNED WITH THE ONE HOSPITAL AND GOING TO FOUR HOSPITALS IN CENTRAL VIRGINIA. AND ANTI-WATER. THREE SCHOOL DIVISIONS, MULTIPLE JOB COACHING AGENCIES. AND WE ENDED UP AGAIN THIS TIME WITH A LARGER N OF 156 T. AS YOU CAN SEE THE RATES OF GRADUATION FROM HIRING WAS MUCH SLOWER. AT GRADUATION WE ONLY HAD 30% EMPLOYED NOT BAD. SIX MONTHS, 63%. 73% AT 12 MONTHS LATER. LONG TERM RETENTION RATES EXCELLENT. ONCE FOLK GET LOCKED IN THEY'RE LOCKED IN, DOING JOBS THAT ARE I'LL GET TO THOSE IN A SECOND. LET'S TALK ABOUT THE EFFECT OF THE EMPLOYMENT ON HOW INDEPENDENT PEOPLE BECAME BECAUSE IT'S NOT JUST ENOUGH TO GET THE JOB. WHAT DOES IT MEAN TO HAVE THE IMPACT OF A JOB. JOBS ARE LIFE CHANGING. THEY'RE TRANSFORMATIVE. SO MANY INDIVIDUALS CAME TO US AND AT LEAST A THIRD TO HALF HAD AN A IN SCHOOL BECAUSE THEY WERE SO DEPENDENT -- APPROXIMATE AID. SO WE USED THE AMERICAN ASSOCIATION OF INTELLECTUAL DEVELOPMENTAL DISABILITIES SUPPORT INTENSITY SCALE AN TRACKED THEM OVER 12 MONTH PERIOD AND FOUND THAT THE CONTROL GROUP STAYED THE SAME. THEY DID NOT OVER THE DIFFERENT DOMAINS WHICH I WILL SHOW YOU IN A SECOND, HAVE ANY DIFFERENCES. WHERE THE TREATMENT GROUP ALMOST IMMEDIATELY BECAME MORE INDEPENDENT. AND THESE WERE IN AREAS SUCH AS EMPLOYMENT COMMUNITY LIVING HOME LIVING HEALTH AND SAFETY, LIFE LONG SOCIAL ACTIVITIES. AND WE ALSO RUN THIS NOW ON THE GROUP THAT WE HAVE JUST FINISHED WITH AND BECAUSE IT'S NOT PUBLISHED YET I'M NOT ABLE TO APPARENTLY TELL YOU BUT IT LOOKED GOOD. SO LET'S LOOK AT STEPHANIE REAL QUICK. WHAT TIME IS IT? HOW IS THE TIME? >> STEPHANIE WORKS IN THE ENDOSCOPY DEPARTMENT AND ONE OF HER RESPONSIBILITIES IS TO HELP WITH ROOM TURN OVER PREPARING STRETCHERS AFTER PATIENT LEAVES, SANITIZING IT AND REDRESSING IT FOR THE NEXT PATIENT TO COME THROUGH. SHE ALSO PREPARED PATIENT BELONGING BAGS AN SETS THOSE ON THE STRETCHER WHEN COMPLETE. >> SHOW ME WHERE THEY ARE. >> THAT WERE HERE. ONE OF HER INTERNSHIPS WAS MANY THE ENDOSCOPY DEPARTMENT, SHE ENDOSCOPY DEPARTMENT. WE HAD APPROACHED THEM SEVERAL TIMES OVER THE YEARS THAT WE HAD BEEN AT SAINT MARIES AND WHEN WE FIRST APPROACHED THEM THEY WERE HESITANT BECAUSE OF THE ENVIRONMENT IN THEIR DEPARTMENT AND THEIR LACK OF EXPOSURE AND UNDERSTANDING OF WORKING WITH INDIVIDUALS WITH DISABILITIES, PARTICULARLY AUTISM SO THEY HAD INITIALLY SAID THEY PREFER NOT TO WORK WITH US, THEY JUST DIDN'T THINK IT WAS A SUITABLE ENVIRONMENT. AND OVER THE YEARS WE CONTINUED TO STOP IN AND JUST CHECK IN AND SEE IF MAYBE THEY WERE READY FOR US THIS TIME. AND WE WORKED WITH -- WE GOT TO SPEAK WITH A MANAGER WHO SAID YOU KNOW WHAT, I HAVE SEEN A LOT OF GUYS AROUND THE HOSPITAL DOING THINGS THAT I NEVER THOUGHT THAT SOMEONE WITH AUTISM WAS GOING TO BE ABLE TO DO. SO I THINK THERE ARE SOME THINGS HERE THAT WE CAN EXPLORE. SHE WAS REALLY CONCERNED ABOUT THE SITES, THE SOUNDS AND THE SMELLS THAT MIGHT BE IN THE ENDOSCOPY DEPARTMENT SO SHE ASKED US TO THREE TO WORK WITH SOMEBODY WHO WOULD BE ABLE TO WORK WITH THE DIFFERENT SMELLS AND SOUNDS AND TAKE THEM SERIOUSLY. YOU MIGHT CUT THIS BUT ONE OF THE THINGS WE ACTUALLY DID WE DOWNLOADED AN APP THAT MADE DIFFERENT SOUND AND PLAYED IT IN THE CLASSROOM AND WE WERE PLAYING THEM LOUDLY TO SEE WHO WOULD RESPOND AND WHO WAS RESPONDING APPROPRIATELY TO THESE INAPPROPRIATE SOUNDS THAT WE WERE PLAYING IN THE ROOM. >> ONE ENDOSCOPY DECIDED THEY WERE OPEN TO WORKING WITH US THEY ASKED US TO COME DOWN AND WE TOURED THE DEPARTMENT WITH THEM AND STARTED TO IDENTIFY DIFFERENT TASKS THAT NEEDED TO GET DONE THAT SOME WERE GETTING DONE REGULARLY BUT THEY WERE BEING DONE BY NURSES BEING PULLED FROM PROVIDING PATIENT CARE. WATCH IT, WATCH IT. ONCE STEPHANIE WAS DOWN THERE THE INTERNSHIP WAS SUCCESSFUL. IT TOOK EDUCATION AND JOB COACH SUPPORT. SHE IS A WONDERFUL WORK E SHE CAME TO US, SHE ENTERED PROJECTS WITH A LOT OF NATURAL SKILLS TO BE A GOOD WORKER, SHE IS ORGANIZED AND ENJOYS THE CLEAN, SHE FOLLOWS INSTRUCTIONS VERY WELL. HOWEVER, HE DOES HAVE EKALALIA AND IT MADE IT DIFFERENT FOR COWORKERS TO INTERACT WITH HER. A LOT OF TEACHING WASN'T NECESSARILY FOR STEPHANIE TO TEACH HER HOW TO DO HER JOB BUT TEACH COWORKERS HOW TO INTERACT WITH HER. HOW YOU DOING? >> HOW ARE YOU DOING? >> GOOD. >> THE COWORKERS WOULD PROVIDE STEPHANIE WITH INSTRUCTIONS FOR DIFFERENT JOB RESPONSIBILITIES AND SHE WOULD REPEAT THEM AND NOT DEMONSTRATE TO THEM THAT SHE WAS UNDERSTANDING SO WE REALLY HAD TO WORK WITH THE DEPARTMENT ON HAVING THEM PROVIDE INSTRUCTION, PAUSE AND HAVE HER REPEAT IT. AND ALSO THAT WRITTEN INSTRUCTION SHE RESPONDS BETTER TO. >> WE ENDED UP WRITING A SOCIAL STORY FOR STEPHANIE, SHE DOES WELL WITH SOCIAL STORIES TO TEACHER H HOW TO HANDLE PARTICULAR SITUATION AND ON TOP OF THAT WE ALSO CONTACTED HER MOM BECAUSE FAMILY SUPPORT WE FOUND IS EXTREMELY IMPORTANT MORE SUPPORT THAT WE HAVE AT HOME IF WE PUT A PLAN INTO PLACE, AT WORK WE LIKE TO LET THE FAMILY KNOW AS WELL SO THEY CAN REITERATE AND REINFORCE FROM THEIR ENAS WELL. >> IF THE REMAINING TIME, I CAN'T HELP BUT THINK AS I LOOK AT BOTH OF THESE THE LAST SLIDE JULIE MENTIONED WHICH WAS INDIVIDUAL FAMILY SERVICES, WORKPLACES. THAT IS EXACTLY WHAT IT WHEN ALL BROUGHT TOGETHER IN THIS PARTICULAR LAST EIGHT YEARS OF OUR WORK. ITHINK I HAVE TWO MINUTES LEFT AND I CAN COVER THAT. WHAT KIND OF JOB THESE FOLKS REQUIRE? ENTERTAINMENT, EDUCATION, DISTRIBUTOR, HOSPITALITY, FOOD SERVICE AND INTERESTING TO ME IN THIS IS IN THE SECOND LARGER GROUP, VERY FEW OF THE HOST HOSPITALS HIRED PEOPLE. IN OTHER WORDS, THE HOSPITAL EFFECT THAT DR. KAPLAN AND I WERE CONCERNED ABOUT DIDN'T SHOW ITSELF. THE MODEL WORKED ACROSS A VARIETY OF DIFFERENT TYPES OF COMPANIES AND INDUSTRIES. TOOK THREE TO SIX MONTHS, WANTS TO GRADUATE IN JUNE AND BE OFF COUPLE OF MONTHS BUT FROM THE POINT OF GRADUATION THREE TO SIX MONTH PERIOD YOU GET PEOPLE EMPLOYED, I HAVE TO TELL YOU I DON'T HAVE RESEARCH ON THIS BUT I CAN TELL YOU THAT IN THREE, FOUR DECADES OF THIS WORK I HAVE NEVER SEEN COWORKERS AN SUPERVISORS EMBRACE INDIVIDUALS WITH SIGNIFICANT DISABILITY LIKE THIS. I'M CONVINCED IT'S BECAUSE NOT ONLY ARE THEY INC ABLY GOOD WORKERS BUT THEY HAVE INCREDIBLE PERSONALITIES. AND SO THE FOLKS THAT I HAD THE OPPORTUNITY TO WORK WITH HAVE VERY UNUSUAL PERSONALITIES AND ALREADY BEGINNING TO MEET TOMORROW WITH DOMINION POWER AND THEY WANT CLIMB ON AND DO THE SAME THING. EXTREMELY EXCITED AN'T THAT. I -- ABOUT THIS. U WILL CLOSE BY SAYING WE LOOKING AT INCREASED MORALE AMONG COWORKERS, INCREASED SENSE OF MISSION AMONG STAFF AND INCREASE PRODUCTIVITY AND I KNOW BECAUSE WE ARE STUDYING RIGHT NOW THROUGH ADDITINAL FUNDING WE ARE RECEIVING AND WE ARE LOOKING AT THE LIVE PEOPLE -- WHY PEOPLE HAVE BEEN WANTING TO HIRE PEOPLE WITH DISABILITIES AND AUTISM. I DO NOT HAVE TIME TO EXPLAIN TO YOU ALL THE HARD FAST DETAILS HOW WE DID THIS. BUT IT WAS IN THE ARCHIVED POWER POINT. WE WERE USING THE COMBINATION OF SUPPORT EMPLOYMENT AND CUSTOMIZE EMPLOYMENT. I WILL STOP RIGHT THERE. THANK YOU. >> GOOD AFTERNOON, HONOR TO BE BEFORE THIS COMMITTEE AMONG SO MANY INDIVIDUALS WHO CARE SO DEEPLY ABOUT THE THRIVING OF YOUNG PEOPLE ON THE AUTISM SPECTRUM. AND I THINK THAT PATHWAY TO MEANINGFUL EMPLOYMENT IS AN IMPORTANT PART OF FLOURISHING FOR SO MANY YOUNG PEOPLE, NOT BECAUSE OF JUST THE PAYCHECK BUT THE CONNECTIONS AND THE RELATIONSHIPS AND THE CONTRIBUTIONS AND VALUED ROLES THAT COME FROM HAVING THE RIGHT JOB. I WAS ASKED TO HIGHLIGHT MOVEMENTS WE ARE MAKING IN STATE OF TENNESSEE. TO CHANGE THE EMPLOYMENT LANDSCAPE FOR YOUNG PEOPLE WITH AUTISM AND INTELLECTUAL DISABILITIES AND OTHER DEVELOPMENTAL DISABILITIES, YOUNG PEOPLE IN URBAN AND SUBURBAN AND RURAL COMMUNITIES ACROSS THE 500 MILES FROM STATE MEMPHIS TO BRISTOL AND EAST. WITH INITIAL FUNDING FROM THE ADMINISTRATION ON INTELLECTUAL AND DISABILITIES PROJECTS OF NATIONAL SIGNIFICANCE GRANT AND OTHERS ALONG THE WAY, WE LAUNCHED SOMETHING CALLED THE TENNESSEE WORKS PARTNERSHIP IN 2012. THIS WAS A SYSTEMS CHANGE EFFORT IN OUR STATE THAT INVOLVED MORE THAN 50 STATE AGENCIES. AND ORGANIZATIONS AND COMMUNITY GROUPS ALL WORKING IN CONCERT TO REALLY RAISE THE ASPIRATIONS AND OPPORTUNITIES AND SUPPORTS AND PREPARATION YOUNG PEOPLE RECEIVE TO ENTER THE WORLD OF WORK BEFORE THEY GRADUATED, BUT CERTAINLY AFTER IN HIS EARLY YEARS OF ADULTHOOD, IN THE KENNEDY CENTER ON EXCELLENCE AND DEVELOPMENTAL DISABILITIES IS THE HUB ORGANIZATION FOR THIS WORK THAT INCLUDE A NUMBER OF OTHER ENTITIES AS WELL. IT'S TRUE IN A LOT OF OTHER STATES, ACROSS THE COUNTRY AS JULIE REFERENCED AND PAUL IMPLIED, THERE'S A NUMBER OF BARRIERS IN OUR STATE THAT PREVENTED YOUNG PEOPLE WHO WANTED TO CONTRIBUTE IN THE WORKPLACE FROM HAVING THOSE KINDS OF OPPORTUNITIES. EXPECTATIONS WORK OFTEN EVEN AMONG PARENTS AND EDUCATORS AND PROFESSIONALS, STATE POLICIES WERE INCONSISTENTLY AIMED TOWARDS INTEGRATED EMPLOYMENT IN OUR STATE, THE AVAILABILITY OF STRONG PROFESSIONAL DEVELOPMENT AND TRAINING WAS HARD TO COME BY. ACCESSIBLE RESOURCES AND INFORMATION VERY DIFFICULT TO FIND AND THAT COMMITMENT WE HAD TO BEING AN EMPLOYMENT FIRST AID DIDN'T ALWAYS PENETRATE PRACTICE, WE HAD MORE SILOS THAN WE HAD COLLABORATION. SO THESE ARE SOME OF THE ISSUES THAT YOU HAVE TO ADDRESS THAT EXTEND BEYOND JUST SINGLE PROGRAM OR INTERVENTION TO REALLY CHANGE THE LANDSCAPE. AND COMMUNITY OR STATE. SOP SINCE THE BEGINNING OF THAT PROJECT WE HAVE I GUESS I WOULD SAY IN TERMS OF THINKING ABOUT THE LAST SIX YEARS OF THIS SYSTEMS CHANGE WORK THERE HAVE BEEN A NUMBER OF THEMES THAT EMERGE FROM THAT WORK. THAT I THINK HAVE RELEVANCE POTENTIALLY TO OTHER STATES AND REGIONS TRYING TO MAKE THESE KINDS OF CHANGES. SO IN MY 17 MINUTES LEFT I WANTED TO HIGHLIGHT NINE KEY TAKE AWAYS FROM THIS SYSTEMS CHANGE WORK. I LEFT THE 10TH IN CASE I THINK OF ONE BEFORE THE END HERE AS WELL. SO I WILL WALK THROUGH EACH OF THESE BUT SINCE THE BEGINNING OF OUR WORK WE HAVE BEEN CONVINCED THAT ALL OUR WORK HAS TO BE AIMED TOWARDS THE ASPIRATIONS OF YOUNG PEOPLE WITH DISABILITIES, THAT THERE'S REALLY NO SEPARATE SET OF DREAMS FOR YOUNG PEOPLE ON THE AUTISM SPECTRUM, NO SUBSTANTIALLY SEPARATE PATHWAY THAT WE SHOULD ASSUME SHOULD TAKE HOLD. OUR OWN CONVERSATIONS WITH PEOPLE ACROSS OUR STATE IN YOUNG PEOPLE IN OUR SCHOOLS AFFIRMS AS POINT ALSO TRUE IN RESEARCH AND THE PRESENCE OF THAT LABEL OF AUTISM IS NOT AT ALL RELIABLE PREDICTOR OF WHAT YOUNG PEOPLE WANT FOR THEIR LIVES SO I BROUGHT A SHORT VIDEO AND I WANT YOU TO LISTEN FOR THE YOUNG PEOPLE WITH A VARIETY OF DISABILITIES WHO CAME FROM RECENT EMPLOYMENT SUMMIT WHO RESPOND TO A QUESTION YOU WERE ASKED A MILLION TIMES WHEN IN HIGH SCHOOL, WHAT DO YOU WANT TO BE WHEN YOU GROW UP. >> BEBECCA? WHERE DO YOU WANT TO BE WHEN YOU GROW UP? >> I WANT TO BE -- THAT'S A HARD ONE. A FARMER. >> I WANT TO WORK WITH ANIMALS >> WHAT KIND OF JOB DO YOU WANT? >> I WANT TO DO -- >> IT TO WORK AT FEDEX, >> I WANT TO WORK AT PUBLIX. >> I WOULD LIKE TO BE A LANDSCAPER. >> I WANT TO BE A SPECIAL EDUCATION TEACHER. >> ALL RIGHT. IS THAT RECORDING? >> YEAH IT'S RECORDING. >> OH GOD T. >> IT'S ALL RIGHT. JUST LOOK AT ME. >> A COMMON QUESTION WITH PRETTY ORDINARY ANSWERS THE THING YOUNG PEOPLE IN OUR STATE AREN'T ASPIRING TO UNEMPLOYMENT OR UNDEREMPLOYMENT, THEY ARE NOT TALKING ABOUT BURNING WAGES IN THEY ARE TALKING ABOUT HAVING GIFTS AND TALENTS THEY WANT TO BRING TO THE WORK FORCE. THAT MAY SOUND ANECDOTAL TO YOU BUT PLURAL OF ANECDOTE IS DATA. THAT'S WHAT THE DATA BEARS OUT AS WELL. IF YOU LOOK AT THE RECENT LONGTITUDINAL TRANSITION STUDY, THEY FOUND STRIKING 95% OF YOUTH WITH AUTISM EXPECT TO HAVE A JOB AFTER GRADUATION IN THE EARLY YEARS AFTER SCHOOL UP TO AGE 30. AND YET IN A PRIOR ITERATION IN THAT NATIONAL LONGITUDINAL STUDY THEY FOUND AFTER LEAVING HIGH SCHOOL FOUR YEARS LATER 47% O YOUNG PEOPLE WITH AUTISM WERE WORKING. HOURS PER WEAK WERE LOWEST OF ANY CATEGORY, 38% SAID THEY LIKED THEIR JOB VERY MUCH. IT TEASE GAP BETWEEN ASPIRATIONS AND OUTCOMES THAT WE'RE WORKING TO CHANGE ACROSS OUR STATE. SO THIS END WE STRIVE TO MAKE SURE THAT YOUNG PEOPLE WITH DISABILITIES AND ASPIRATIONS ARE AT THE FOREFRONT OF THE SYSTEMS CHANGE WORK. MAKING SURE THEY'RE PART OF THE PARTNERSHIPS WORK GROUPS THAT THEY'RE HAVING A STRONG PRESENCE ALL OUR EMPLOYMENT SUMMITS PRESENT DOING ADVOCACY DOWN ON CAPITAL OR ON THE HILL AND MANY OTHER PLACES A Z WELL SO THE SECOND THEME FROM THAT WORK IS WE COME TO SEE OUR OWN EXPECTATION VERSUS TO ACTUALY MATCH OR EVEN EXCEED ASPIRATIONS OF YOUNG PEOPLE WITH DISABILITIES. ONE OF THE MOST POWERFUL FORCES IN CHANGING TURNS OUT TO BE CAN HE BATIONS THAT PARENTS EDUCATORS AND OTHER HOLE. WE FOUND YOUNG ADULTS WITH AUTISM INTELLECTUAL DISABILITY WHOSE PARENTS EXPECTED THEM TO OBTAIN WORK AFTER GRADUATION WERE FIVE TIMES OR MORE LIKELY TO HAVE PAID JOBS IN THE COMMUNITY THE FIRST COUPLE OF YEARS AFTER EXITING SCHOOL A FINDING PAUL AND COLLEAGUES HAVE ALSO FOUND AS WELL. THE EXPECTATIONINGS OF EDUCATORS ARE POWERFUL, WE FOUND HIGH SCHOOL STUDENTS WITH DISABILITIES HAD TEACHERS WHO EXPECTED THEM TO OBTAIN PAID SUMMER JOBS, WERE 15 TIMES MORE LIKELY TO HAVE THAT PAYING JOB IN THE COMMUNITY TRACKING THEM OVER TIME SO WE'RE EARLY IN OUR OWN PROJECT LAUNCHED A STUDY AIMED UNDERSTANDING ABUSE OF MORE THAN 2400 PARENTS ACROSS STATE UNEMPLOYMENT, HALF WHOM HAD SONS AN DAUGHTERS WITH AUTISM, 83% SAID THEY EXPECTED PAID PART OR FULL TIME WORK FOR SONS OR DAUGHTERS MORE THAN TWICE AS MANY MENTIONED SHELTER SEGREGATED OPTION AS WELL BUT THEY EMPHASIZE QUALITY OF THAT WORK NOT WHETHER OR NOT SON OR DAUGHTER HAD A JOB BUT JOB THAT MATCHED -- BROUGHT PERSONAL SATISFACTION AND MATCH THEIR SONS AND DAUGHTERS INTERESTS THAT PROVIDED OPPORTUNITIES FOR INTERACTION THAT ALLOWED FOR FRIENDSHIP DEVELOPMENT. SO PAY AN HOUR'S FOR WORK MATTER BUT OTHER QUALITATIVE ASPECTS OF WORK MATTERED AS MUCH OR MORE. WE HAVE ALSO BEEN TAKING STEPS TO TRACK EXPECTATIONS OF EDUCATORS IN OUR STATE AND BEGIN TO RAISE THEM AS WELL. WE HAVE DONE THREE LARGE SCALE SURVEYS O MORE THAN 2000 MIDDLE SCHOOL AND HIGH SCHOOLTEACHERS TO HELP FIGURE OUT WHAT RESOURCES THEY NEED TO STRENGTHEN COMMITMENT AND CAPACITY TO PREPARE YOUNG PEOPLE FOR THE WORLD OF WORK AND THEN WE INCORPORATE WHAT WE LEARN FROM TEACHERS TO THE PROFESSIONAL DEVELOPMENT AND TRAINING RESOURCES THAT WERE DEVELOPING. WE HAVE COME TO SEE SOMETHING PAUL MENTION AD BIT AGO, THE IMPORTANCE OF TELLING A DIFFERENT STORY ABOUT DISABILITY AND AUTISM. ONE THAT FOCUSES ON THE GIFTS AND THE STRENGTHS AND THE PASSIONS AND THE ASSETS AND CONTRIBUTIONS THAT YOUNG PEOPLE CAN MAKE IN THE WORKPLACE. EMPLOYERS WANT TO HIRE STRENGTHS, AND THAT IS PERFECT BECAUSE YOUNG PEOPLE HAVE INCREDIBLE STRENGTH TO BRING TO THE WORKPLACE, BUT THAT REQUIRES HELPING PROFESSIONALS THINK DIFFERENTLY ABOUT YOUNG PEOPLE AND CHOOSING DIFFERENT ASSESSMENTS THAT DON'T JUST FOCUS ON WHAT PEOPLE CAN'T DO AND STRUGGLE TO DO BUT HELP IDENTIFY TALENTS AND STRENGTHS AND FIGURE WHERE IF THE COMMUNITY DOES SOMEONE NEED THOSE SORTS OF THE THINGS. SOME MAYBE FAMILIAR WITH OCTOBER AWARENESS CAMPAIGN HIRE MY STRENGTHS, THIS IS EXACTLY WHAT WE ARE TRYING TO DO IS SHOWCASE STRENGTH OF YOUNG PEOPLE AND INVITE EMPLOYERS TO CONSIDER A BROADER SEGMENT OF THEIR COMMUNITY WHEN THEY THINK ABOUT WHO EXACTLY TO HIRE. THE FOURTH THEME OUT OF SYSTEMS CHANGE WORK IS ISSUE OF ALIGNING OUR POLICIES. WE HAVE LEARNED THAT IT'S ABSOLUTELY ESSENTIAL TO MAKE SURE OUR POLICIES ALIGN WITH THOSE ASPIRATIONS AND ALSO THOSE HIGH EXPECTATIONS. SO WE HAVE ESTABLISHED A STATE EMPLOYMENT ROUND TABLE POLICY WORK GROUP THAT'S TACKLING THIS WORK, IT'S COMPRISED OF AGENCIES FROM ALL CORNERS OF OUR STATE LEADERSHIP STRIVING WHO ALIGN THOSE POLICIES TOWARDS INTEGRATED COMPETITIVE EMPLOYMENT. JUST TRYING TO BRING CONSISTENCY AN FOCUS AND LEADERSHIP TO MAKE SURE STATE POLICIES MATCH THOSE ASVATIONS. -- ASPIRATIONS. THERE'S EXAMPLES THAT COME TO MINE BUT ONE EARLY SUCCESS WAS GETTING OUR GOVERNOR TO SIGN EMPLOYMENT FIRST EXECUTIVE ORDER IN 2013, WHICH ESTABLISHED THIS TASK FORCE AND BECAME CATALYST FOR STRATEGIC STATEWIDE MOVEMENTS POLICY CHANGES AND SERIES OF ANNUAL REPORTS EACH YEAR OUTLINE WHAT PROGRESS WE HAVE MADE AND WHERE WE NEED TO GO NEXT. SO IT'S BUILT IN AN ACCOUNTABILITY IN THE STATE IN TERMS OF THIS BUT NUMBER OF OTHER POLICY CHANGES AROUND ACCESS AND SUPPORT TO HIGHER EDUCATION. LOWERING THE REQUIREMENT FOR TRANSITION PLANNING DOWN TO 14 TRYING TO EQUIP THE AMERICAN JOBS CENTERS TO ADDRESS THE NEEDS OF PEOPLE WITH DISABILITIES. THAT'S WHAT THIS WORK GROUP IS TRYING TO DO AND THE POLICY WORK HAS TO MOVE IN ORDER IF GET THE PRACTICES TO CHANGE AS WELL. WE ALSO RECOGNIZE WE HAVE GOT TO DO A BETTER JOB EQUIPPING PROFESSIONALS AND I HEARD THIS MENTION EARLIER IN A COMMENT PERIOD. WE HAVE WORK TO MAKE SURE POLICIES WE ARE IMPLEMENTING ARE PERMEATING PRACTICES AND EDUCATORS AND SERVICE PROVIDERS AND EMPLOYERS HAVE TO BE FLUENT IN BEST PRACTICES IF WE'RE GOING TO GET OUTCOMES CHANGED. IF THEY'LL HAVE THE BEST CHANCE IMPROVING OUTCOMES THEY HAVE TO KNOW THE BEST OF WHAT WORKS. THIS IS REALLY HARD FOR PRACTITIONERS TRYING TO FIGURE HOW TO FIND EFFECTIVE TRAINING AND PRACTICAL RESOURCES TO GUIDE OUR WORK SO WE HAVE TAKEN INVESTMENTS REALLY TO TRY TO MAKE SURE THAT PROFESSIONAL DEVELOPMENT IS AVAILABLE AND ACCESSIBLE AND EFFECTIVE. WE WORK WITH DEPARTMENT OF EDUCATION TO DEVELOP A FREE ONLINE PROFESSIONAL DEVELOPMENT SERIES FOR SECONDARY AN TRANSITION EDUCATORS NOW MORE THAN 45,000 MIDDLE AND HIGH SCHOOLTEACHERS IN OUR STATE. WHO NEVER HAD TRAINING IN PRE-SERVICE TRAINING NOW HAVING ASSESS TO HIGH QUALITY TRAINING AND RESOURCES WHEREVER THEY ARE IN THE STATE. THEY DON'T HAVE TO TRAVEL TO NASHVILLE FOR CONFERENCE OR POST SECONDARY PROGRAM TO GET THIS INFORMATION, IT'S AVAILABLE ON DEMAND. WE MADE THIS AVAILABLE TO Y'ALL IF YOU ARE INTERESTED IN ACCESSING THIS RESOURCE FOR 24 HOURS IT'S FREE FOR YOU, AFTER THAT IT'S ALSO FREE. ALWAYS FREE, CREATES EMERGENCY. WE ARE TRYING TO CREATE A COMPANION MODEL IN PARTNERSHIP WITH DEPARTMENT OF HUMAN SERVICES AS WELL. BUT WE ARE ALSO THEN TRYING TO TRACK WHETHER THAT TRAINING AND PROFESSIONAL DEVELOPMENT ACTUALLY REACHES ALL CORNERS OF OUR STATE BY SYSTEMATICALLY FIGURING WHICH COUNTIES HAVE TEACHERS BEING TRAINED USING RESOURCE WHICH ARE NOT TO MORE DATA DRIVEN APPROACH TO PROFESSIONAL DEVELOPMENT AND MAKING SURE IN OUR STATE WE ADOPT A TIERED APPROACH TO INFORMATION DISSEMINATION SO NOT JUST TRUSTING BECAUSE WE DEVELOP AND WROTE ABOUT IT IT MAKES HANDS OF EDUCATORS AN PARENTS ACTUALLY SYSTEMATICALLY PLANNING FOR THAT AND TRACKING WHETHER THAT ACTUALLY TAKES PLACE. SIX WE LEARNED THE IMPORTANCE OF MAKING INFORMATION ACCESSIBLE, THIS CAME UP AS WELL EARLIER ON. I THINK VERY PRONE TO SHARING RESEARCH WITHIN PEER REVIEW JOURNALS AND ACADEMIC CIRCLES AND POLICY DOCUMENTS AND THOSE SORTS OF THINGS BUT WHEN WE TALK TO PARENTS AND EDUCATORS THEY PRIORITIZE ALTERNATIVE WAYS OF GETTING INFORMATION TO THEM. PRACTICE GUIDES, DOWNLOADABLE RESOURCES, WEBSITES, VIDEOS AND APPS, EMPLOYERS AND COMMUNITY LEADERS NOT CONNECTED TO DISABILITY NETWORKS WILL NEVER FIND OUT ABOUT PRACTICES IN OUR RESEARCH UNLESS WE FIND OTHER WAYS COMMUNICATING THAT TO THEM. SO WE DEVELOPED A WEBSITE THROUGH OUR TENNESSEE WORKS PARTNERSHIP THAT ORGANIZES CONTENT BY STAKEHOLDER GROUP WHETHER THAT'S SELF-ADVOCATES, FAMILY MEMBERS, EMPLOYERS OR AGENCY, FEATURES UPCOMING EVENT, DATA DASHBOARD, SUCCESS STORY, VIDEO LIBRARY AND SEARCHABLE RESOURCE DATABASES, DRAWING THOUSANDS OF UNIQUE VISITORS EACH MONTH AND THEN WE ARE TRYING TO PUSH INFORMATION OUT THROUGH SOCIAL MEDIA, AND NEWS LETTERS AND JUST IN TIME AVENUES. THAT'S WAY OF MAKING SURE WE DON'T HAVE TO BE DEEPLY CONNECTED BY RESEARCH LITERATURE OR ACCESS TO JOURNALS TO KNOW WHAT WORKS AND IMPACT THINGS IN THE STATE. SHARING TENNESSEE DISABILITY SPECIFIC INFORMATION ESTABLISHING FAMILY COALITIONS ACROSS OUR STATE LAUNCHING A PARENT LED BLOG THAT DEMYSTIFIES AGENCIES AND PROGRAMS AND POLICIES IN LANGUAGE THAT FAMILIES CAN UNDERSTAND AND TELLING SUCCESS STORIES AND SHARING THOSE WITH OTHER FAMILIES WHO STRUGGLE TO CATCH A VISION FOR EMPLOYMENT BUT WHEN THEY SEE ANOTHER PARENT WHO HAS SON OR DAUGHTER WITH SIMILAR CHARACTERISTICS AS THEIRS THEY START TO SEE A PATH TO EMPLOYMENT BECAUSE OF THAT. WE ALSO LEARN IMPORTANCE OF ENGAGE COMMUNINGTIES. STRENGTHENING SUPPORTS IS ESSENTIAL AT THIS WORK BUT LOCAL LEVEL POLICIES AN PRACTICE PLAY OUT AND SO MANY COMMUNITIES ARE UNCERTAIN ABOUT HOW TO MOVE IN THE SPACE THAT LEAD TO EMPLOYMENT OPPORTUNITIES FOR YOUNG PEOPLE WILL THE AUTISM. RARELY DO WE DRAW UPON COMMUNITY IDEAS TO INFORM POLICY CHANGE AN SYSTEMS CHANGE AS WELL SO HALLMARK OF OUR WORK OVER THE LAST FIVE YEARS IS EFFORTS TO HEAR FROM AND ENGAGE RAISE WARENESS LOCAL COMMUNITY LEVELS LOCAL CIVIC LEADERS EMPLOYERS BUSINESSES COMMUNITY GROUPS, PHAT COMMUNITIES FAMILIES AND OTHERS IN INNOVATIVE WAYSES THAT ALLOW US TO FIGURE HOW TO MAKE MOVEMENTS HERE IN THIS LOCAL TOWN OR COUNTY OR COMMUNITY. LOCAL CHANGE IS HARD, IT'S NOT CHANGED BY A SINGLE PROGRAM OR INTERVENTION. THERE'S MULTIPLE COMPONENTS AT LOCAL COMMUNITY THAT HAVE TO CHANGE. BOTH JULIE AND PAUL REFERENCED THIS. IT PIECE NOT JUST WHAT SCHOOLS DO OR WHAT FAMILIES EXPECT OR WHAT EMPLOYERS ARE WILLING TO DO OR HOW AGENCY SUPPORT, IT ALSO REQUIRES THINKING ABILITY THE ENGAGEMENT OF LOCAL COMMUNITIES AS WELL. SO WE HAVE BEEN LAUNCHING COMMUNITY CONVERSATION EVENTS, THIS IS OUR PRIMARY WAY OF LEARNING FROM LISTENING TO LOCAL COMMUNITY MEMBERS, THEY INVOLVE BRINGING TOGETHER A CROSS SECTION OF CITIZENS AT LEVEL OF TOWN OR COUNTY AND WE REQUIRE HALF BE PEOPLE WHO HAVE NO CONNECTION TO THE SILLVILLETY OR RISK SERVICE SYSTEM. THEY JUST KNOW THEIR COMMUNITY WELL, CARE DEEPLY ABOUT IT AND WE INVITE THEM ALONG WITH FAMILIES AND DISABILITY SERVICE PROVIDERS AND OTHERS TO THINK ABOUT HOW THAT COMMUNITY MAKE LOCAL CHANGES THAT ELEVATE EMPLOYMENT OUTCOMES FOR PEOPLE WITH DISABILITIES. WE HAD 60 AROUND STATE OF TENNESSEE ON VARIETY OF TOPICS YOU CAN SEE HERE SOME UNEMPLOYMENT, SOME ON OTHER ISSUES AS WELL. EIGHT, ONLY TWO MORE HERE. WE REALIZED THE IMPORTANCE OF DATA IN ALL THIS. DOES THIS MAY RECOLLECT A DIFFERENCE IN OUR STATE? ELEVATING OUTCOMES REQUIRES WE ALSO MEASURE WELL AND WE HAVE TO COLLECT GOOD DATA AND THEN FIND WAYS OF SHARING THOSE DATA WITH ALL THE STAKEHOLDERS IN OUR STATE AS WELL. DATA THAT WAS PERCEIVED AS A FOUR LETTER WORD IN OUR STATE ABOUT SEVEN YEARS AGO AND I THINK PEOPLE ARE NOW EXCITED ABOUT WHAT'S THE DATA TELLING US ABOUT WHETHER THIS IS MAKING A DIFFERENCE. IT MAKES ME THINK ABOUT THAT YOGE BERRA QUOTE, IF YOU DON'T KNOW WHERE YOU'RE GOING YOU MIGHT NOT GET THERE, WE DIDN'T KNOW WHERE WE WERE IN OUR STATE UNTIL WE STARTED TO EMBED RESEARCH AND OTHER DATA COLLECTION ACTIVITIES INTO OUR TENNESSEE WORKS PARTNERSHIP. WE CREATED A DATA DASHBOARD SO THAT INFORMATION WAS AVAILABLE TO OTHERS IN OUR STATE ADS WELL AS STEP OBJECTIVE GOALS FOR OUR STATE, IN THIS CASE TO REDUCE THE GAP IN EMPLOYMENT WITH PEOPLE WITH AND WITHOUT DISABILITIES BY FIVE PERCENT BY 24023. SO -- 2023. WE HAVE A CLEAR MEASURE EVERY STATE AGENCY CAN GET BEHIND THAT GIVES A REFERENCE POINT TO FIGURE OUT WHETHER WHAT WE'RE DOING IS MAKING A DIFFERENCE. THEN WE HAVE COUPLED THAT WITH THE RESEARCH COMMUNITY, CARRYING OUT A SERIES STUDIES TO EVALUATE DIFFERENT ASPECT OF THIS PARTNERSHIP AND BE ABLE TO DOCUMENT WHAT'S HAPPENING TO EACH OF THOSE DIFFERENT AREAS THAT WERE MAKING INVESTMENTS, THESE ARE JUST A SAMPLE OF SOME OF THE STUDIES THAT HAVE COME FROM THAT PROJECT AND WE CAN CERTAINLY MAKE THOSE AVAILABLE TO YOU AS WELL. THE LAST OF THESE THEMES THAT WE LEARNED ARE IMPORTANT ARE RELATIONSHIPS AMONG STATE AGENCIES OR OTHER PARTNERS. SYSTEMS CHANGE WORK LICK THIS TAKES AN INVESTMENT IN RECOMMENDATION SHIPS AND WE HAVE SEEN -- RELATIONSHIPS AND WE HAVE SEEN THE POWER OF BUILDING CONNECTIONS AMONG STATE AGENCIES WHETHER ECONOMIC AND COMMUNITY DEVELOPMENT LABOR EDUCATION, DEPARTMENT OF INTELLECTUAL AND DEVELOPMENTAL DISABILITIES PNA AND HOST OF OTHERS, GETTING THEM IN THE SAME ROOM, CONVERSING WITH ONE ANOTHER AND DEVELOPING RELATIONSHIPS THAT CAN ENDURE THAT CONSTANT CHANGING OF PERSONNEL IN THOSE DIFFERENT AGENCIES. TO CREATE A SHARED INVESTMENT OVER TIME. THAT'S BEEN CRITICAL FOR GETTING THESE MOVEMENTS TO SUSTAIN OVER THE LAST SIX YEARS. WITH TIME WRAPPING UP NOW, I WANT TO EMPHASIZE THE SYSTEMS CHANGE WORK IS A SLOW PROCESS, RARELY PROCEEDS IN PREDICTABLE WAYS BUT IT'S A CRITICAL INVESTMENT, WE WON'T CHANGE OUTCOMES JUST BY HAVING A SINGLE INTERVENTION, BUT FIGURING HOW WE MOVE ALL THE DIFFERENT PARTS IN OUR STATE IN TANDEM IN THE SAME DIRECTION AND OVER TIME WE ANTICIPATE THAT WILL START TO LEAD TO NOT ONLY MORE EMPLOYMENT OUTCOMES BUT BETTER HIGH QUALITY EMPLOYMENT OUTCOMES THAT LEAD TO A LIFE OF FLOURISHING FOR YOUNG PEOPLE WITH AUTISM. THANK YOU. [APPLAUSE] >> GOOD AFTERNOON. IT'S GOOD TO GO LAST IN THE PAM BECAUSE YOU CAN SKIP A FEW SLIDES THAT HAVE BEEN REPEATED. ONE OF THE THINGS I WANT TO KNOW AND MAYBE HELP ALERT YOU TO IS YOU WILL HEAR SOME SIMILAR THEMES FROM MY PERSPECTIVE AND IT'S INTERESTING TO HEAR THOSE THEMES FROM RESEARCHERS FROM THREE DIFFERENT DISCIPLINES FROM THREE OR FOUR PARTS OF THE COUNTRY DOING THIS KIND OF WORK. SO AS JULIE MENTIONED I'M FROM THE UNIVERSITY OF WASHINGTON, BACKGROUND IS ORGANIZATION SCIENCE AND INFORMATION SYSTEMS, SO I COME AT TRYING TO UNDERSTAND EMPLOYMENT OPPORTUNITIES FOR AUTISM COMMUNITY FROM THE EMPLOYER PERSPECTIVE AND PARTICULARLY FROM BUSINESSES WHO ARE ENGAGING IN CREATING OPPORTUNITIES EQUAL OPPORTUNITIES FOR THE AUTISM COMMUNITY, SO I'M GOING TO TALK ABOUT AN INITIATIVE THAT WE JUST COMPLETED, WE JUST COLLECTED OUR DATA THIS FALL AND WINTER AND THIS IS LITERALLY HOT OFF THE PRESS, THIS IS A DIFFERENT TYPE OF WORK, QUALITATIVE WORK TO UNDERSTAND SOME OF THE PRACTICES OF ORGANIZATION. SO I WILL TALK ABOUT THAT. I'M GOING TO SKIP A FEW SLIDES BECAUSE IT'S BEEN DISCUSSED SO I CAN SPEND MORE TIME ON THE FUN THINGS. AS MENTIONED BY ERIK AN OTHERS IN ORDER TO PROVIDE FUNDING OPPORTUNITIES AND ADDRESS THE CHALLENGE OF UNEMPLOYMENT OF AUTISM COMMUNITY, ALL MEMBERS AND PARTNERS HAVE TO BE INVOLVED. IN -- AROUND 2000, SOME IN THE TECHNOLOGY INDUSTRY IN PARTICULAR TOOK A SPECIAL INTEREST IN THE UNEMPLOYMENT FOR INDIVIDUALS WITH AUTISM. WANTED TO CREATE SOME PROGRAMS THAT COULD HAVE A SOCIAL IMPACT. MORE AND MORE INDUSTRY MEMBERS ARE TAKING NOTE OF THE TALENT AND THE DIVERSITY OF AUTISM COMMUNITY AND TRYING TO UNDERSTAND HOW WE CAN ENGAGE THEM IN THE EMPLOYMENT AND VARIOUS INDUSTRIES THAT THEY CAN CONTRIBUTE SPECIAL TALENTS TO. SO MORE INTEREST HAS BEEN TAKEN BY INDUSTRY MEMBERS AND RESEARCHERS FROM BUSINESS SCHOOLS AND ORGANIZATION SCIENCE TO UNDERSTAND DIVERSITY OF SKILLS WITHIN THE COMMUNITY AND HOW WE CAN ENGAGE IT. AND THIS IS WHERE MANY STARTED TALKING ABOUT AND IDENTIFYING SOME UNIQUE TALENTS LIKE ATTENTION TO DETAIL ANALYTICAL THINKING SYSTEMIZING VISUALIZATION THAT CAN BE HELPFUL TO A VARIETY OF INDUSTRIES. AND TECHNOLOGY TOOK A SPECIAL INTEREST IN THAT AND MY RESEARCH FOCUSED IN EARLY PHASE TECHNOLOGY INDUSTRY AND ON INDIVIDUALS WITH AUTISM WITHOUT INTELLECTUAL DISABILITY, THAT'S WHERE THIS RESEARCH TALKS ABOUT QUITE A BIT. BUT ALSO THE INDUSTRY STARTED ALSO LOOKING AT RESEARCH THAT'S BEEN DONE ON EMPLOYMENT AND IDENTIFYING EMPLOYEE CHARACTERISTIC LIKE TRUSTWORTHINESS AND RELIABILITY AND INNOVATION THAT IS SURFACING AROUND AUTISM EMPLOYMENT PROGRAMS AND TRY TO COMMUNICATE THAT AND UNDERSTAND THAT BETTER TO PROVIDE EQUAL OPPORTUNITY, BUT ALSO TO USE THAT TO BETTER INDUSTRY AS WELL. THIS IS WHERE THE RISE OF AUTISM EMPLOYMENT PROGRAMS CAME ABOUT. AND AROUND 2004 IN DENMARK AN INDIVIDUAL NOTICED UNIQUE TALENTS OF HIS SON WHO IS ON THE SPECTRUM AROUND ATTENTION TO DETAIL, AND AROUND SOME TESTING OF SOFTWARE AND DESIGN TECHNOLOGY FIRM THAT PROVIDES SERVICES A VARIETY OF INDUSTRIES TO DO SOFTWARE TESTING AND QUALITY ASSURANCE. YOU BILL A MODEL TO FIND UNIQUE STRENGTHS AND MATCH THEM WITH JOBS IN HIS CONSULTING FIRM, HE DEVELOPED A MODEL COPIED BY A VARIETY OF INDUSTRY MEMBERS. FIRST AND LARGEST THAT GAVE A PLATFORM FOR AUTISM HIRING PROGRAMS IN TECHNOLOGY, S ASHP LAST YEAR JOSE FROM SAP TALKED TO YOUR COMMITTEE, AS WELL SO SAP CREATED A AUTISM HIRING PROGRAM THAT INTENDED TO PROVIDE EMPLOYMENT OPPORTUNITIES FOR INDIVIDUALS ON THE SPECTRUM BREAKING DOWN BARRIERS THAT TRADITIONAL RECRUITMENT METHODS PRESENT FOR INDIVIDUALS WITH AUTISM THROUGH CAREER FAIRS AN INTERVIEW PROCESSES THAT DIDN'T WORK VERY WELL. SO MOCKER SOFT ERNST AND YOUNG AND FORD THAT WORKS IN TECHNOLOGY INDUSTRY, SEEING OTHER COMPANIES LIKE RISING TIDES, WHO ARE PROVIDING VARIETY OF POSITIONS AS WELL. SO THAT'S WHAT AUTISM SPECIFIC HIRING PROGRAMS. THEY HAVE GREAT POTENTIAL, THEY CAN PROVIDE RESOURCES, THEY CAN PROVIDE OPPORTUNITIES, THEY TAKE A STRENGTH PERSPECTIVE BUT CHALLENGING STILL PERSIST. THERE'S LESS UNDERSTANDING HOW TO CREATE THESE PROGRAMS AND CREATE EQUITY AN INCLUSION OF INDIVIDUALS WHO ARE ENTERING THE WORKPLACE. THROUGH THESE PROGRAMS. MANY UNANSWERED QUESTIONS. PARTICULARLY THIS IS WHERE I COLLABORATED WITH THE EMPLOYER ROUND TABLE THAT REPRESENTS COMPANIES THAT ARE ENGAGING IN THESE PROGRAMS TO TRY TO UNDERSTAND HOW CAN ORGANIZATIONS CHANGE, DEVELOP SUPPORTIVE PROGRAMS, DEVELOP INTERVENTIONS, THAT ARE MORE UNCOLLUSIVE AND PROVIDE MORE OPPORTUNITIES FOR INDIVIDUALS ON THE SPECTRUM IN INDUSTRY. SO WE LOOK AT WHAT IS IT ABOUT THE ORGANIZATION WHAT ARE THE ORGANIZATIONAL CHARACTERISTIC AND WHAT ARE THE INTERVENTION CHARACTERISTICSES THAT MAXIMIZE OPPORTUNITIES AND MINIMIZE THE BARRIERS. SO WHAT IS IT ORGANIZATIONS HAVE TO DO IN INDUSTRY TO CHANGE SO THAT WE CAN PROVIDE AN ENVIRONMENT THAT'S EQUITABLE AND INCLUSIVE. THIS IS WHERE OUR WORK STARTED. AND WE LOOK AT THIS BY LOOKING AT FOUR ORGANIZATIONS AND REALLY TRY TO UNDERSTAND WHAT WORKS AND WHAT DOESN'T WORK. WHAT DO THESE PROGRAMS HIRING PROGRAMS LOOK LIKE, WHAT ARE THE KEY ORGANIATIONAL CHARACTERISTICS AND WHAT ARE THE BEST PRACTICES. AND WHAT WE DEVELOPED WAS ACTUALLY WHAT WE CALL A GUIDE BOOK, PLAY BOOK FOR OTHER ORGANIZATIONS THAT ARE INTERESTED IN DEVELOPING, AUTISM HIRING PROGRAMS, ACROSS VARIETY OF INDUSTRY COMPANIES OF DIFFERENT SIZES THAT UTILIZE AND REALLY LEARN ABOUT THESE BEST PRACTICES. SO THAT WE CAN CREATE MORE OPPORTUNITIES ACROSS A BROADER RANGE OF OS AND NOT JUST LARGE TECHNOLOGY FIRMS FOR EXAMPLE. THE WAY WE LOOK AT THIS, CONSISTENT WITH ERIC AND PAUL'S WORK TO TAKE A STRENGTH PER SPECK PAVETIVE, LOOK AT WHAT ORGANIZATIONS -- PERSPECTIVE, WHAT ARE THE INTERVENTIONS THAT CAN ADDRESS THE BARRIERS THAT EXIST IN OUR WORKPLACE BUT ALSO RAISE AWARENESS AND EDUCATION IN THE WORKPLACE AROUND DIVERSITY OF AUTISM AND TALENT AND ADDRESS THE DIVERSITY OF NEEDS AND DESIRES AND EXPECTATIONS OF MEMBERS ENTERING THE WORKPLACE ON THE SPECTRUM, UNDERSTANDING THE DIVERSITY AND HETEROGENEITY OF THE COMMUNITY REQUIRES VARIETY O INTERVENTION AND REQUIRES A VARIETY OF ACCOMMODATIONS AND HOW WE CAN LEARN FROM THOSE DIVERSITY OF NEEDS, THAT WILL HELP CHANGE THE ORGANIZATION SO THAT ANY INDIVIDUAL WHETHER THEY WANT TO DISCLOSE THEIR AUTISM OR WHETHER THEY KNOW THEY'RE ON THE SPECTRUM CAN COME ENGAGE IN THE WORKPLACE IN EFFECTIVE WAYS. THAT'S WHAT WE TOOK A LOOK AT. AGAIN WHAT WE FOCUSED ON SPECIFICALLY IS WHY ARE COMPANIES ENGAGING IN THESE TYPES OF EMPLOYMENT PROGRAMS. WHAT ARE THEIR OBJECTIVES OF THESE EMPLOYMENT PROGRAMS. WHAT ARE THE METHODS AND PRACTICES THEY USE TO CREATE THOSE OPPORTUNITIES AND TO SUPPORT MEMBERS OF THE AUTISM COMMUNITY COMING INTO THE WORK MACE, AND HOW DO THEY MEASURE THE IMPACT OF THESE PROGRAMS BOTH ON THE INDIVIDUAL BUT ALSO ON ORGANIZATION AS A WHOLE. SO WE CAN UNDERSTAND IT BETTER AND HOW IT WORKS. SO I SPENT QUITE A BIT OF TIME WITH THE FOUR FIRMS ERNST AN YOUNG, J.P. MORGAN CHASE, MICROSOFT AND MICROSOFT SPONSORED THIS WORK BECAUSE THEY WANTED TO SHARE THEIR BEST PRACTICES AND THEY WANTED TO IDENTIFY BEST PRACTICES ACROSS WHAT WE THINK OF AS THE ORIGINAL FOUR AND THE FIRST FOUR COMPANIES WITHIN THE U.S. THAT DID THESE PROGRAMS. SO WE SPENT TIME TALKING TO THEM, LOOKING THROUGH THEIR DOCUMENTATION, I ALSO CONDUCTED A RESEARCH WORKSHOP LAST YEAR WITH INDUSTRY MEMBERS AS WELL AS ACADEMICS TO IDENTIFY SOME OF THE CHALLENGES AND THE QUESTIONS THAT ARE UNANSWERED, AND I'LL TALK ABOUT THAT AS WELL. WE DID DATA ANALYSIS, I WILL SHARE THE PRELIMINARY RESULTS HERE. FIRST WHAT WE LEARN ABOUT WHY FIRMS OF DIFFERENT SIZES IN PARTICULAR THOSE FOUR FIRMS WHY DO FIRMS ENGAGE IN PROGRAMS AND WHAT ARE OBJECTIVES? WHAT WE FOUND, COMPANIES START ENGAGING IN THESE TYPES OF PROGRAMS BECAUSE THEY WANT TO MAKE SOCIAL IMPACT. THEY FEEL IT'S PART OF THE CORPORATE RESPONSIBILITY TO ENGAGE IN PROVIDING OPPORTUNITIES BECAUSE THEY CAN. MANY OF THEM WILL TALK ABOUT CERTAIN CORE VALUES THE ORGANIZATIONS HOLD THAT MAKES THESE TYPES OF PROGRAMS CONSISTENT WITH WHAT THEY SHOULD DO. FOR EXAMPLE, MICROSOFT TALKS ABILITY ACCESSIBILITY AS A CORE VALUE. IT'S IMPORTANT FOR THEIR ORGANIZATION AS A CULTURE BUT ALSO IT'S IMPORTANT FOR THE KINDS OF PRODUCTS THEY PRODUCE THAT THEY SHOULD BE AXISABLE. SO THAT'S AN IMPORTANT ONE. IT'S REALLY IMPORTANT FOR ORGANIZATIONS TO UNDERSTAND WHY THEY ARE DOING THESE KIND OF PROGRAMS AND HOW CONSISTENT THESE PROGRAMS CAN BE AND WHAT KIND OF METHODS THEY WILL INTEGRATE SO THEY CAN BE CONSISTENT AND EFFECTIVE. THE OTHER ASPECT WHICH BECOMES IMPORTANT ESPECIALLY FOR THE SUSTAINABILITY AND THE SCALABILITY OF THE PROGRAM IS HOW -- WHAT ARE THE BUSINESS BENEFITS OF THESE PROGRAMS? THIS IS WHERE YOU TAKE -- THEY TOOK A STRENGTH BASED PERSPECTIVE, THERE'S TALENTS IN THE COMMUNITY, THAT CAN MEET NEEDS OF THE ORGANIZATIONS AND TECHNOLOGY INDUSTRY THAT NEEDS IS CLEAR THERE ARE JOBS THAT GO UNFILLED AND WE FOUND SOME RESEARCH IDENTIFIED THAT, THERE'S PERCENTAGE, 16% OF COLLEGE STUDENTS PURSUING TECHNOLOGY DEGREES THAT ARE ON THE SPECTRUM SO THERE'S A TALENT POOL THAT IS IMPORTANT TO ENGAGE IN THE COMMUNITY THAT BECOMES OPPORTUNITY IN THESE ORGANIZES THEY EMPHASIZE OTHER AND OVER AS AN IMPORTANT CATALYST FOR CREATING THE PROGRAMS WHERE WE CAN MEET TALENTS WITH NEEDS AS WELL. THE OTHER THING THAT AS PROGRAMS MATURE, ONE OF THE THINGS THESE ORGANIZATIONS FOUND, WHETHER THEY'RE COMPETING WITH MILLENIALS THEY WANT TO ENGAGE AND WORK FOR COMPANIES THAT HAVE A POSITIVE SOCIAL IMPACT. A NUMBER OF FIRMS WERE TOLD THAT WHEN CERTAIN EMPLOYEES ARE DECIDING BETWEEN TWO OFFERS WHEN ALL THINGS ARE EQUAL IF A COMPANY HAS A PROGRAM LIKE AUTISM HIRING THEY WILL REFERENCE IT SPECIFICALLY, THEY WILL CHOOSE THE COMPANY THAT HAS IT. FOR VARIETY OF NEEDS. ONE WAY WANT COMPANIES THAT ARE SOCIALLY RESPONSIBILITY BUT ALSO NUMBER OF INDIVIDUALS THAT ARE -- HAVE PERSONAL EXPERIENCES WITH FAMILY MEMBERS OR THEM THEMSELVES ARE ON THE SPECTRUM THEY FEEL THIS IS A COMPANY THAT HAS SIMILAR VALUES TO MIND MINE AND THAT'S WHY I'M JOINING IN SO IS IT'S BECOMING A VERY IMPORTANT PART OF THE EMPLOYER REPUTATION. AND BRAND. AND IT'S BECOMING AN IMPORTANT PART THEY ARE COMPETING ON. OTHER INSTANCES AS THESE PROGRAMS ARE NOT NEW, SAP HAVE BEEN AROUND SINCE 240134, MICROSOFT -- 2013, MICROSOFT -- THE FACT YOU HAVE DIFFERENT PERSPECTIVES. WHEN YOU HAVE A VERITY VERSE TEAM YOU CAN PROVIDE -- VERY DIVERSE TEAM YOU CAN HAVE DESIGNS PRODUCTIVE FOR PLEBS OF INDUSTRY SO -- MEMBERS OF INDUSTRY. SO THEY POINT TO A NUMBER OF INSTANCES WITHIN THEIR ORGANIZATIONS THAT HAPPENED. A VERY IMPORTANT CATALYST WILL WHETHER A PROGRAM WILL SURFACE OR NOT, THIS IS DIFFERENT THAN MOST OTHER DIVERSITY INCLUSION EFFORTS THAT I STUDY FOR UNDERSERVED POPULATIONS. COMPANIES DECIDE WHETHER THEY CAN DO THIS EFFORT OR NOT, IF THE ECOSYSTEM, THE COMMUNITY HAS THE RIGHT RESOURCES. IF THE STATE HAS THE RIGHT POLICIES AND AGENCIES THAT CAN CONTRIBUTE, IF THE COMMUNITY MEMBERS ARE INVOLVED AND SUPPORTIVE OF THESE EFFORTS. SO THE ECOSYSTEM BECOMES REALLY IMPORTANT FOR WHETHER A FIRM WILL ENGAGE IN THESE PROGRAMS OR NOT. IS WITH LARGE MULTI-NATIONAL, THE SCALE AT DIFFERENT LOCALS WITHIN AND OUTSIDE THE U.S. BECAUSE REMEMBER THESE COULD BE CATALYSTS FOR CHANGE ACROSS THE WORLD, A LOT SOMETIMES SAY WE CAN'T DO IT HERE BECAUSE WE DON'T HAVE THE SUPPORTS, THE LOCAL SUPPORTS FOR WHETHER IT'S COACHING OR OTHER SUPPORTS FOR MEMBERS. SO THAT BECOMES REALLY IMPORTANT THAT HAS BEEN DISCUSSED. BUT QUESTIONS REMAIN AROUND CATALYSTS OBJECTIVES FOR THESE EVERYONE HAS NOW IS HOW TO SCALE THE PROGRAM FROM 72 INDIVIDUALS WITHIN ONE LOCAL OR ONE OR TWO STATES, TO ACROSS THE U.S. THOUGH I HAVE 200,000 EMPLOYEES AN OFFICES ACROSS THE WORLD, HOW DO I SCALE IT, HOW DO I INVEST IN THIS PROGRAM AND FIND SUPPORTS IN THE COMMUNITY AND SOMETIMES HOW DO I FIND EMPLOYEES THAT WILL MEET THE DEMAND OF THE DIFFERENT COMMUNITIES. SO THAT'S ONE THAT KEEPS COMING UP. MORE IMPORTANTLY, HOW DO WE SCALE THESE PROGRAMS SO THAT WE CAN SERVE WITHIN OUR ORGANIZATION? PEOPLE WITH A VARIETY OF NEEDS AND ABILITIES? ACROSS THE SPECTRUM, NOT JUST WHERE MANY OF THESE PROGRAMS ARE. ALSO HOW TO DO THIS IN COLLABORATION WITH EXISTING PROGRAMS AROUND DIVERSITY AND INCLUSION THAT EXIST IN THE ORGANIZATION. SO THOSE ARE QUESTIONS THAT REMAIN AROUND CATALYST AND OBJECTIVES WHY PEOPLE ARE DOING THIS, AND WHAT ARE THEIR GOALS AROUND THIS. THE SECOND ASPECTED WHICH IS MAYBE LONGER BUT WHAT METHODS AND PRACTICES DO THEY USE? WHAT IS REALLY IMPORTANT? THE FIRST THING IS LEADERSHIP SUPPORT IS THE MOST IMPORTANT AND IN FACT MOST SUCCESSFUL COMPANIES ARE THE ONES WHERE THESE INITIATIVES ARE INITIATED BY SOME OF THE EXECUTIVES AND WHY THEY DO THAT. IT IS MORE CONSISTENT WITH THE CORE VALUES AND BECOMES BETTER SUPPORTED AND FUNDED. WE TALK ABOUT THAT QUITE BIT. LEADERSHIP SUPPORT IS NOT JUST A SIGN OFF WHEN YOU ARE CHANGING CULTURE AND CHANGEING A SYSTEM OF ORGANIZATION, SENDING THE MESSAGE OF THIS IS SOMETHING WE VALUE AND HERE IS HOW WE WILL BEHAVE AND INCLUDE, HERE IS HOW WE CREATE EQUAL OPPORTUNITY THAT COMES FROM THE LEADERSHIP, IT REINFORCES THAT CULTURE AND SAYS HERE IS WHAT WE EXPECT YOU TO DO AND BEHAVE ADS SO IT CHANGES KNOWLEDGE AND ATTITUDES AROUND WHO SHOULD WORK ALONGSIDE ME. SO THAT BECOMES REALLY IMPORTANT AND IT DOESN'T START JUST AT THE BEGINNING, YOU HAVE TO DO IT CONTINUOUSLY AND WE WILL TALK ABOUT THAT. ANOTHER IMPORTANT DIMENSION IS ALL THESE PROGRAMS LOOK DIFFERENT AND THEY LOOK DIFFERENT ACROSS ORGANIZATIONS BECAUSE THEY HAVE TO BE ALIGNED WITH ORGANIZATIONAL VALUES, CULTURE, THE WAY THE BUSINESS MODEL IS BEING DELIVERED HOW THEY DO THEIR BUSINESS. SO THERE'S VARIETY AND THAT IS BY NEED. DESIGNING A PROGRAM HAS TO BE FITTING WITHIN THE COMPANY AND HAS TO BE VERY SYSTEMATIC ABOUT HOW WE ASSESS WILL WORK AND HOW TO MEASURE IT, THE OTHER IMPORTANT SET OF PRACTICES THE BUILDING A CULTURE OF DIVERSITY. ONLY CASING EMPLOYEES WHAT AUTISM IS AND HOW YOU MIGHT ENGAGE PRODUCTIVELY. IMPROVE SUPERVISORY RELATIONSHIP. WE WILL TALK ABOUT IMPROVED SUPERVISORY RELATIONSHIP BECAUSE IT'S THE MOST SIGNIFICANT FACTOR. AND MOST SIGNIFICANT FACTOR ACROSS A VARIETY OF UNDERSERVED COMMUNITIES THAT I STUDY, ACROSS INDUSTRY. WHEN MONITORS ARE TRAINED ON EFFECTIVE PRACTICES, AND LEADING A TEAM AND CREATING COLLABORATION ACROSS THE TEAM BETWEEN NEUROTYPICAL MEMBERS AND NEURODIVERSE MEMBERS WHEN THEY DO THAT WELL THOSE UNIVERSAL PRACTICES OR THOSE PRACTICES BECOME UNIVERSAL, GOOD MANAGERIAL PRACTICES SO ONE OF THE THINGS THESE ORGANIZATIONS SAY WHEN I HAVE MANAGERS GO THROUGH THE AUTISM AWARENESS AND THE AUTISM CULTURE TRAINING, THEY BECOME BETTER MANAGERS ACROSS THE BOARD. SO WE ARE SEEING A SPILL OVER EFFECT WHERE MANAGERS ARE BETTER MANAGERS FOR PEOPLE ON THE SPECTRUM BUT BETTER MANAGED FOR THEIR ENTIRE TEAM BUT NAY ARE ORGANIZATION. AND HOW THESE PRACTICES CHANGE BECOMES IMPORTANT SO THAT'S A REALLY IMPORTANT DIMENSION WHERE THOSE PROGRAMS ARE CATALYSTS FOR REALLY GOOD CHANGE ACROSS THE ORGANIZATION AS WELL. THE OTHER THING THAT IS IMPORTANT BEST PRACTICE IS PROVIDING ACCOMMODATION IN A CONTINUOUS PATTERN WHEN AN INDIVIDUAL ENGAGES IN THESE PROGRAMS AND HAVE THEIR COACH FROM VDR FOR THE FIRST SIX MONTHS DEPENDING ON NEEDS, IT'S IMPORTANT TO CREATE A SYSTEMATIC PROCESS WHERE YOU REASSESS AND REENGAGE IN ACCOMMODATIONS AN UNDERSTAND ACCOMMODATIONS WILL VARY ACROSS THE COMMUNITY. BUILDING MECHANISMS IN A SYSTEMATIC CONTINUOUS WAY ALONG LIFE SPAN OF PROGRAM AND EMPLOYEE BECOMES REALLY IMPORTANT. IN SOME CASES SOME OF THOSE ACCOMMODATIONS WHETHER IT'S THE CHANGING OF THE INTERVIEW OR NOISE CANCELING HEADPHONES OR STAND UP AND DOWN DESKS BECOME IMPORTANT PRACTICES WHERE SOME ORGANIZATIONS MICROSOFT FOR ALL EMPLOYEE MS. THE ORGANIZATION NOW. WHEN YOU START YOUR JOB YOU COME TO A DESK STAND UP AND DOWN AND HAS NOISE CANCELING HEADPHONES BECAUSE THEY ARE EFFECTIVE. THEY ARE STARTING TO USE PRACTICES IN WHAT WE THINK OF AS MAINSTREAM PRACTICES AS WELL. THE LAST THING T THESE PROGRAMS DIFFER, THEY'RE INNOVATIVE, THE WAY RECRUITMENT AND ON BOARDING IS DEVELOPED IS IMPORTANT. I WILL TALK ABOUT THAT IN A MINUTE. THEY THINK ABOUT THE LIFE SPAN OR LIFE CYCLE OF AN EMPLOYEE, HOW DO WE PREPARE EMPLOYEE AND ENGAGE WITH EDUCATIONAL INSTITUTIONS TO PREPARE FOR THE WORKPLACE. WHAT ARE THE MORE EFFECTIVE MECHANISMS AROUND RECRUITING, AND ON BOARDING AND HOW TO RETAIN AND ON BOARD THEM. A CRITICAL PIECE, THIS IS A LITTLE SIMILAR TO WHAT EVERYONE TALKED SO FAR IS THINKING ABOUT THE EMPLOYEE AS HAVING A SUPPORT CIRCLE WITHIN THE COMPANY PROVIDE WITH A VARIETY OF SUPPORT PERSONNEL, AND SOME OF THESE -- EVERYBODY HAS A MANAGER, MAINSTREAM AS WELL. MOST ORGANIZATIONS HAVE MENTORS IN PLACE. MOST HAVE TEAMS THEY COLLABORATE EMBEDDED IN. THERE IS A JOB COACH TO HELP BRIDGE THE GAP BETWEEN A PERSON'S PERSONAL LIFE CIRCLE AND THE SUPPORTS THEY GET THERE AND THEIR NEEDS WITH INTERNAL. SO THINKING ABOUT THIS EFFORT IS REALLY IMPORTANT BUT THINKING PRIVACY CONCERNS WHEN YOU HAVE AN EMPLOYEE THEIR PARENTS OR EXTERNAL AN PERSONAL SUPPORT CIRCLE WANTS TO ENGAGE WITH THE MANAGER. AND HOW YOU BALANCE THAT ARE SOME OF THE CHANGES THE ORGANIZATION SPACE, YOU HAVE TO RESPECT THE PRIVACY AND INDEPENDENCE OF EMPLOYEE, IS TO DEPENDING ON NEEDS SO UNDERSTANDING THAT LIFE CYCLE PERSONAL AND PROFESSIONAL, IS REALLY CHALLENGING. I ONLY HAVE A MINUTE SO I'M GOING FAST THROUGH THAT. AND THE ECOSYSTEM IS SOMETHING REALLY IMPORTANT TO UNDERSTANDING HOW YOU CAN DEVELOP PARTNERSHIPS INTERNAL TO ORGANIZATION WITH THE COMMUNITY, LOCAL COMMUNITY AND EXTERNAL COMMUNITY AND HOW YOU BALANCE THOSE VALUES AND THOSE PRESSURES. ALLOT OF QUESTIONS REMAIN. WE HAVE MORE QUESTIONS THAN WE HAVE ANSWERS. WE HAVEN'T STUDIED THESE PROGRAMS YET BECAUSE THEY'RE NEW AND REALLY DIFFICULT TO STUDY AND I WILL TALK ABOUT THAT IN A SECOND. SO I WON'T GO THROUGH ALL THESE QUESTIONS BUT THEY ARE THERE TO REVIEW IF INTERESTED IN THE SLIDES. HOW DO YOU ESTABLISH AND SYSTEMATICALLY MEASURE IMPACT OF PROGRAMS ON EMPLOYEES. ESPECIALLY INTEGRATED EMPLOYMENT MODEL NOT NECESSARILY MEASURING ANYTHING DIFFERENTLY BECAUSE OF MAINSTREAM BECAUSE OF HR REGULATION AS WELL, THOSE ARE THINGS COMPANIES STRUGGLE WITH, HOW MEASURE AND COMMUNICATE THESE METRICS AND WHAT SPECIFIC METRICS HOW ARE THEY CONSISTENT. HOW TO BALANCE SOCIAL IMPACT AND IMPRVEMENT PERFORMANCE, THOSE ARE THE TENSIONS THAT AROUND VALUE AND CULTURE OF THE TYPE OF ORGANIZATION. AND WHEN TALKING PERFORMANCE IN SOME INSTANCES CERTAIN JOB ROLES YOU ARE SEEING THAT INDIVIDUALS WHO COMPLY THE AUTISM HIRING PROGRAM ARE PERFORMING EXCEEDING PERFORMANCE EXPECTATIONS IN TERMS OF AVERAGE THEY PRODUCE AND WHAT IT MEANS FOR NEUROTYPICAL COLLEAGUES NOT MEETING THE SAME KINDS OF METRICS IN PRODUCTIVE AND WHAT THAT MEANS FOR HOW TO MANAGE SHAH AND HOW TO TALK DIFFERENT EXPECTATIONS BECAUSE THERE'S SKILL SETS MORE SUITABLE FOR THOSE JOBS SO THOSE ARE QUESTIONS IN INDUSTRY, A LOT OF OPEN ONES, ONE IMPORTANT QUESTION WHEN WE TALK ABOUT PERFORMANCE METRICS HOW DO YOU ENGAGE SELF-ADVOCATES AND EMPLOYEES TO TALK ABOUT HERE IS WHAT SUCCESS MEANS FOR US AND HOW TO EMBED IN ORGANIZATIONS. SO ONE OF THE REALLY IMPORTANT PARTS FOR ALL OF US RESEARCHERS IS HOW TO ENGAGE COMPANIES AND PARTNER WITH THEM IN THE CONTEXT THAT I HAVE PROBABLY 20 MORE SECONDS THEN I'LL BE COMPLETE. SO WHEN WE ARE TRYING TO ENGAGE AND STUDY PRACTICES AN IMPACT OF THESE PROGRAMS ON INDIVIDUALS WHO ARE ALREADY EMPLOYED THERE ARE SOME LEGAL LIABILITY ISSUES AROUND GAINING ACCESS TO DATA OR ACCESS TO MEMBERS PARTICIPATING. THAT MAKES IT DIFFICULT FOR ACADEMICS. RISK OF CONFIDENTIALITY OF MEMBERS OF THE ORGANIZATION. PRACTICAL IMPLY IMPLICATIONS FOR INDUSTRY PARTNERS IS HIGH. BUT REALLY IMPORTANT ONE IS HOW TO INCLUDE THE VOICE OF SELF-ADVOCATES IN THIS RESEARCH. I STUDY WOMEN WITH AUTISM THAT WORK IN THE TECHNOLOGY INDUSTRY IN PARTICULAR AND I IDENTIFIED AD NUMBER OF INDIVIDUALS BUT THEY GET ASKED TO PARTICIPATE IN THESE STUDIES OVER AND OVER AGAIN. THERE IS OF PEOPLE ENGAGING IN THESE PROGRAMS SO THOSE ARE SOME THINGS WE ARE TRYING TO FIGURE OUT SOME OF THESE CHALLENGES AROUND STUDYING EMPLOYMENT FROM THE EMPLOYER SIDE. SO FOR ME I WOULD CONCLUDE WITH SAYING GREAT POTENTIAL FOR THESE PROGRAMS AND WHEN I TALK TO EMPLOYERS AN COLLABORATE WITH THEM THERE SHALL -- THERE'S REAL EXCITEMENT AND REAL INTENTIONALITY TO CREATE EFFECTIVE PROGRAMS. THE CHALLENGE IS FROM RESOURCE PERSPECTIVE, THESE STUDIES ARE HARD TO FUND BECAUSE THEY'RE QUALITATIVE, FOCUS ON COMPANIES, ONLY A FEW PEOPLE IN COMPANIES THE LARGEST HAS 150. HOW DO YOU UNDERSTAND WHAT'S HAPPENING, WHAT IS THE FACT OF THAT AND HOW DO WE SHARE BEST PRACTICES ACROSS THE BOARD IS THE CHALLENGE BUT THERE'S ENERGY AROUND IT. THANK YOU. I'M COMPLETE. [APPLAUSE] >> NOT SURE HOW MUCH TIME LEFT, TO WE HAVE TIME FOR DISCUSSION? >> WE HAVE A WHILE FOR DISCUSSION IF NECESSARY. WE WERE DUE TO TAKE A BREAK AROUND 3:55 IS WHEN WE'RE DUE SO PLENTY OF TIME FOR DISCUSSION. LARRY. THEN JOHN. SORRY AND ALLISON. THANK YOU. >> KNEW FOR THE PRESENTATION. JUST A GENERAL QUESTION, MA I APPLY MORE TO PAUL. WERE ANY OF THESE PARTICIPANTS ON SSI BEFORE THEY STARTED? IF THEY WERE, HAPPENED IN >> YOU HAVE TO PRESS THE BUTTON -- THERE YOU GO. YOU PRESSED IT AND TURNED IT OFF. TURN IT BACK ON. THIS YOU GO. >> SLOW LEARNER. SOME WERE ON SSI, THE REAL QUESTION I THOUGHT YOU WERE GOING TO ASK IS HOW MANY HOURS DID THEY WORK AND THEY WENT RIGHT INTO THE SOCIAL SECURITY CLIP. MANY COULD HAVE BEEN WORKING 25, 30, 32 HOURS, THEY ALMOST ALMOST ALL STOPPED AT 23 HOURS. AND FIVE AND SEVEN YEARS OUT 35, 37 OR 40 HOURS THEY STOPPED AT 23 HOURS SO YOU PICK UP YOUR 745 FROM SOCIAL SECURITY AND YOUR 900 BECAUSE MOST ARE MAKING BETWEEN 10 AND $13 AN HOUR AN MAKING BETWEEN 15 AND $100 A MONTH. AND OF COURSE THEY GOT THEIR BENEFITS. SO SSI, I HAVE HAD COMMUNICATIONS WITH PEOPLE DIRECTLY IN CONGRESS AND THEIR AIDS. MY THEORY HAS BEEN LET THEM EARN AS MUCH AS THEY WANT, TO KEEP THEIR SSI 98% ON SSI ANYHOW. LET THEM WORK AND BUILD THE WORK ETHIC AND SOME POINT LATER IN LIFE IF THEY HAVE A CAREER DEVELOP YOU CAN START EASING OFF SSI. BUT SSI IS ALWAYS GOING TO BE NOT RECEIVING, THE BENEFIT COUNSELING TAX INCENTIVES THAT ARE OUT THERE, THERE ARE INCENTIVES THAT WORK OUT BUT THAT IS I GIVE UP FIGHTING THAT. I FOCUS MORE REALLY ON THE INCLUSION AREA ASPECTS OF IT. >> I ASK BECAUSE WE'RE PRETTY MUCH COMPLETE THE PROMISE GRANTS WHICH HAVE 13,000 FAMILIES AND THAT WAS THE WHOLE POINT OF THEM FROM CONGRESS. AND WE DON'T REALLY HAVE THE RESULTS BUT MY GUESS IS THEY WON'T BE VERY MUCH DIFFERENT THAN YOURS. >> IT WAS INTERESTING BECAUSE I HAVE HAD THE OPPORTUNITY RECENTLY TO BE COMPARING FOR EXAMPLE THE WISCONSIN PROMISE GRANT VERSUS THE NEW YORK ONE. DRAMATICALLY DIFFERENT. DRAMATICALLY DIFFERENT. THE WISCONSIN OUTCOMES WERE INCREDIBLE, THE NEW YORK ONES WERE LESS INCREDIBLE. AND SSI ASPECT PLAY AD MAJOR ROLE IN BOTH OF THOSE, JUST A SIDE BAR. I'M WITH YOU. >> JOHN. >> I GUESS I GOT A LITTLE BIT OF CONTRARIAN POINT OF VIEW. BEING ADVISOR TO SOME OF THE AUTISM WORK EFFORTS MYSELF. ONE OF THE THINGS YOU DIDN'T MENTION, NOBODY REALLY WANTS TO TALK ABOUT IN AUTISM AT WORK IS THAT THE WHOLE PROGRAM AND ALL THESE COMPANIES IS FOUNDED UPON THE ASSUMPTION THAT THESE AUTISTIC PEOPLE WILL BE HELPED INTO THE WORKPLACE BY GOVERNMENT FUNDED VOCATIONAL COUNSELING. SO THEY TALK ABOUT ALL THESE THINGS THE EMPLOYER DOES TO MAKE THE EMPLOYEE SUCCESSFUL IT IS EASY TO GET THE IMPRESSION THAT'S THE GOOD WILL OF THE EMPLOYER BUT IT'S NOT. IT'S THE GOVERNMENT AGENCY STEPPING IN AND PROVIDING THAT TO MAKE IT POSSIBLE. I CAN'T FAULT EMPLOYERS FOR TAKING WHAT THEY'RE ABLE GET FROM THE GOVERNMENT BUT WHAT I HEAR FROM PEOPLE WHO DON'T BECOME AUTISM OR HIRE AUTISM OR INTERNS THEY DON'T WANT THE STIGMA. TO QUALIFY FOR AUTISM AT WORK YOU HAVE TO QUALIFY FOR VOCE REHAB OR DISABILITY SERVICES SUPPORT FROM YOUR STATE. WHEN I LOOK AT YOUNG PEOPLE WHO ARE COMING OUT OF COLLEGE PROGRAMS LIKE OURS, WE SAY TO ME THEY SAY JOHN, I WAS IN SPECIAL ED FOR ALL THOSE YEARS IN SCHOOL, I'M SO PROUD I MADE IT TO A MAINSTREAM COLLEGE, THERE'S NO WAY IN THE WORLD I'M GOING BACK TO STATE AND SAY NOW I'M DISABLED HELP ME DO THIS. SO WHAT THAT LEADS ME TO WONDER THEN, IS I SUSPECT A VERY LARGE FRACTION OF THE AUTISTIC POPULATION WHO IS ABLE TO GO TO COLLEGE FEELS EXACTLY AS I JUST SAID, MY QUESTION FOR LARRY IS, IS THERE A POSSIBILITY EDUCATION AND LABOR COULD WORK TOGETHER SO WE CAN QUALIFY YOUNG ADULTS WHO HAD SPECIAL ADD DIAGNOSES IN HIGH SCHOOL TO RECEIVE SOME LEVEL OF BENEFIT OR TREATMENT WHEN THEY GO TO EMPLOYMENT WITHOUT THEM HAVING TO GO SEEK FULL DISABILITY SUPPORT. MAYBE THAT IS A TIME LIMITED THING, DISABILITY SUPPORT ISN'T NORMALLY TIME LIMITED. BUT THERE ARE PEEP WHO FALL THROUGH THE CRACKS BECAUSE THEY ARE TOO PROUD AND UNWILLING TO ASK FOR THOSE SUPPORTS BUT AT THE SAME TIME THEY DON'T QUITE HAVE THE SKILLS TO MAKE IT FULLY AND IT FALSE APART FOR THEM. Q. FIRST OF ALL WHEN STUDENTS MOVE IN TO COLLEGE, SERVICES AT COLLEGE ARE BASED ON SELF-IDENTIFICATION. SOFT THAT'S -- WE -- ONCE A KID GRADUATES HIGH SCHOOL THEY ARE OUT OF OUR REALM 100%. THEN IT'S VR OR LABOR OR IT'S SSI. THERE'S ACTUALLY NOT MUCH WE CAN DO. WE WORK VERY -- WE ARE WORKING CLOSELY WITH VR ON A NUMBER OF THEY ARE IN OUR OFFICE ON A NUMBER OF INITIATIVES. BUT THAT'S A TOUGH NOT CRACK IN TERMS OF GETTING SSI TO DROP THE REQUIREMENT TO BE IDENTIFIED AS A PERSON WITH A DISABILITY IN ORDER TO GET SERVICES. SO I DON'T KNOW. YOU'RE PUTTING ME ON THE SPOT. PAUL IS LAUGHING UP THERE, HE MIGHT HAVE THE ANSWER. >> I'M NOT LAUGHING AT ALL. WHAT I'M REALLY THINKING ABOUT THE INCREDIBLE SPECTRUM OF DIFFERENT PEOPLE. I HAVE BEEN IN CEREMONIES IN PRINCETON, ONE OF THEM I SEE, THESE ARE PEOPLE WHO I HAVE MET THAT ARE PROFESSORS THAT WOULD NEVER NEED ANYBODY FROM ANY GOVERNMENT TO HELP THEM. THEY'RE BRILLIANT. BUT THEN I'M ALSO THINKING ABOUT A VERY LARGE TECHNOLOGY BANK COMPANY THAT IS ALL OVER THE POLICE AND CAME TO US AND THEY WERE GOING TO -- THEY WANTED US -- THEY WANT US TO SEND THEM IN TERMS OF ON BOARD AND THEN HIRE. SIX MONTHS LATER PHONE RINGS. PEOPLE ARE DOING GREAT AT WORK BUT THEY GOT A, B, C CHALLENGING. CAN YOU COME ON OVER AND HELP? I DO WORKSHOPS, I WAS AT A WORKSHOP NOT LONG AGO CHILDREN'S HOSPITAL PHILADELPHIA, MOTHER COMES UP WITH TWO SONS, ONE A MAJOR IN PHYSICS ONE IN CHEMISTRY, TRIED THE GET WORK, WORKED FOR A WHILE, GOT THE BRAIN POWER TO DO IT, CAN'T GET ADJUSTED QUITE RIGHT. SO I'M NOT COMPLETELY SURE THAT YOU CAN DIVORCE THE GOVERNMENT SUBSIDIZED ACTIVITY BUT WHEN -- TALKING ABOUT THIS, I WANT YOU TO JUMP IN ON THIS, I BELIEVE -- SORRY. I BELIEVE SHE HAD A LOT PACKED IN THERE. THE REAL SOLUTION TO SCALING THIS THING UP THIS WOULD GET TO YOUR POINT, IF THESE COMPANIES ARE SERIOUS ABOUT HIRING PEOPLE ACROSS THE SPECTRUM THEY NEED TO HIRE STAFF WITHIN THEIR OWN HR DEPARTMENTS THAT ARE TRAINED LIE SOME OF THOSE LADIES THAT I SHOWED UP ON MY SCREEN THERE. EVERY NOW AND THEN MAJORITY OF PEOPLE, ON AUTISM SPECTRUM ARE NOT LIKE THE PEOPLE YOU SAW -- THEY'RE NOT. THEY HAVE MORE CAPACITY ACROSS THE BOARD. BUT PERIODICALLY THERE ARE GOING TO BE CHALLENGES JUST LIKE THERE ARE WITH OTHER EMPLOYEES. HR IS CALLED IN WITH OTHER EMPLOYEES FOR DRINKING OR DEPRESSION OR WHATEVER. WHY SHOULDN'T THEY ALSO CALL IN FOR SOME OF THE SAME ISSUES? I SCREWED UP YOUR NAME. WOULD YOU ANSWER IT TOO? >> COUPLE OF THINGS I WILL SAY. THE HIRING PROGRAMS ARE THE BRIDGE TO CONNECT CANDIDATES AND BREAK DOWN INTERVIEW BARRIERS. SO I THINK THAT IS ONE DIMENSION. I UNDERSTAND THAT INCLUDING MY STUDENTS SO I RUN A PREPARATION PROGRAM AT THE UNIVERSITY OF WASHINGTON FOR TECHNOLOGY STUDENTS, SO THAT THOSE WHO DON'T WANT TO GO THROUGH THE HIRING PROGRAM CAN ASK FOR SPECIAL ACCOMMODATIONS AROUND INTERVIEW AND GOING THROUGH A MAINSTREAM PROCESS WITH A FEW MODIFICATIONS SO NOT EVERYONE HAS TO OR CAN OR SHOULD GO THROUGH A SPECIFIC PROGRAM. BUT THESE ORGANIZATIONS ARE TRYING TO DO, IN PARTICULAR SOME THAT ARE MORE ADVANCED IS TRYING TO UNDERSTAND HOW THEY CAN CHANGE SOME OF THE MAINSTREAM PROCESSES TO BE MORE INCLUSIVE, SO THAT INDIVIDUAL WHO MIGHT NOT WANT TO GO THROUGH THE SPECIFIC PROGRAM AND HAVE LESS NEEDS CAN SUCCEED. SOME OF THE PRACTICES WE ARE TALKING ABOUT ARE HELPFUL AND SPILL OVER TO INDIVIDUALS WHO ALREADY EXIST IN THESE ORGANIZATIONS THAT ARE IN THE SPECTRUM THAT DO NOT DISCLOSE. WE HEAR THIS QUITE A BIT FROM CURRENT EMPLOYEES THAT MIGHT DISCLOSE TO MARE MANAGERS AT THAT POINT BUT TALK ABOUT HOW SOME OF THE CHANGES MANAGERIAL BEHAVIOR AND RAISING AWARENESS AND CHANGING THE ATTITUDES AROUND WHO CAN WORK AND WHO CAN CONTRIBUTE AND IN WHAT KAY WAYS AND HAVING AGENCY AND HAVING MEMBERS OF THE COMMUNITY, THE AUTISM COMMUNITY FEEDBACK TO HOW YOU CAN CHANGE THESE PROGRAMS IS REALLY IMPORTANT, IT'S CHANGING THE FABRIC OF ORGANIZATIONS SO THERE'S A DEPENDENCE INITIALLY IN THE EARLY PHASES TO CREATE WHAT I CALL BRIDGES THROUGH THE EMPLOYMENT PROCESS, THE ON BOARDING PROCESS, THAT IS HELPFUL AND NECESSARY MIGHT CHANGE OVER TIME. I THINK THESE PROGRAMS ARE NOT JUST ABOUT CREATING SUPPORT OR UTILIZING FEDERAL SUPPORT FOR EMPLOYMENT, IT'S REALLY ABOUT HELPING THE ORGANIZATION CHANGE AND BUILDING CAPACITY WITHIN THE ORGANIZATION. OVER TIME MAYBE THAT CAPACITY IS PREPARING SPECIFIC INDIVIDUALS TO PROVIDE THAT TRAINING BUT I THINK IT'S MORE THAN THAT. >> YOU'RE EXACTLY RIGHT. IT'S JUST YOU ARE TOO EARLY. WE ARE AT THE FIRST PHASE OF ACTUALLY SHOWING THAT PEOPLE WITH AUTISM NOT ONLY CAN WORK SUCH AS I SHOWED IN OUR VIDEOS BUT CAN REALLY MAKE HUGE CONTRIBUTIONS AND BECOME PART OF THE FABRIC OF THE ORGANIZATION. DIVERSITY PROGRAM. THAT'S THE FIRST PHASE. THE NEXT PHASE IS FOR SOME OF THESE CORPORATIONS LIKE WE HAVE RANDY LEWIS COMING IN FROM WALL GREEN'S TOMORROW. THEY HAVE DONE PRETHEN DOUSE THINGS AT WALGREENS BUT I DON'T THINK THEY HAVE REACHED THE POINT WHERE ALL THEIR REGIONAL RETAIL HR OFFICES HAVE GOT PEOPLE WHO ARE SPECIALISTS IN DEALING WITH CHALLENGING FORMS OF DIFFERENT TYPES OF DISABILITIES THAT MAY BE NEURAL TYPICAL NOT JUST OFFTISM SPECTRUM DISORDERS BUT OTHERS. IF YOU WANT TO MOVE AWAY FROM HAVING -- IF YOU DON'T MOVE AWAY FROM HAVING THE GOVERNMENT BEING INVOLVED EVERY TIME IN IT, YOU WILL NEVER GET TO THE SECOND OR THIRD FADES BECAUSE THERE IS NOT ENOUGH GOVERNMENT PROGRAMS ALL GOING TO GET TOGETHER, IT'S THE CORPORATIONSES THAT REALLY HAVE TO TAKE OVER AND RUN THIS THING SO WE'RE UP TO A LITTLE TOO EARLY WITH THAT, STILL NOT HAPPENING YET. >> I'LL ADD ONE OTHER EXAMPLE, ONE THING WE ARE SEEING WITH ONE COMPANY THAT IS A LITTLE MORE ADVANCED ARE INDIVIDUALS WHO ARE HIRED THROUGH THE PROGRAM ARE NOW CARRYING OUT THE TRAINING. SO A PERSON ON THE SPECTRUM IS CARRYING OUT THE AWARENESS TRAINING AND THE MANAGERIAL TRAINING BECAUSE THEY HAVE BEEN THROUGH THE PROGRAM AND THEY KNOW NOT -- THEY'RE DOING THE TRAINING FOR MANAGERS OF HOW TO MANAGE NEURODIVERSE TEAM. THAT'S VERY POWERFUL. >> I WANT TO MAKE SURE THERE'S PEOPLE WHO WANT TO MAKE COMMENTS AND QUESTIONS ALLISON. YOU'RE NEXT. >> I HAVE A QUESTION FIRST HOW THE CONDUCT THIS RESEARCH AND THEN I WANT TO INTRODUCE ANOTHER DATA POINT. IT SEEMS TO ME THAT WHEN WE ARE LOOKING AT EMPLOYMENT RESEARCH WE ARE LOOKING AT INDIVIDUALS WITH AUTISM WHO RECEIVE A CERTAIN TRAINING INTERVENTION VERSUS INDIVIDUALS WITH AUTISM WHO DON'T RECEIVE THAT INTERVENTION. WHY ARE WE NOT COMPARING INDIVIDUALS WITH AUTISM TOP TYPICALLY DEVELOPING INDIVIDUALS? ERIK YOU QUOTE AD STATISTIC WHERE YOU SAID 38% OF ADULTS WITH AUTISM WHO ARE FOUR YEARS OUT OF HIGH SCHOOL, REPORT THAT THEY LIKE THEIR JOB VERY MUCH. I WOULD BE INTERESTED TO KNOW HOW MANY TYPICALLY DEVELOPING 22-YEAR-OLD REPORT THEY LOOK THEIR JOB VERY MUCH. WHY IS THAT THE NOT THE CONTROL GROUP? >> THERE ARE SOME DATA SETS AND STUDIES THAT DO REFERENCE BOTH OF THOSE. PARTICULAR DATA SET I WAS REFERENCING DIDN'T HAVE COMPARABLE DATA INCLUDED IN THAT, ONE IS LOOKING AT THE DATA SETS WHERE THIS IS BEING COLLECTED AND MAKE SURE -- MAKING SURE THERE ARE REPRESENTATIVE SAMPLES OF OTHERS WHO DON'T HAVE DISABILITIES AS WELL. SO WE HAVE BEEN LOOKING AT LEVEL DATA. WE HAVE TWO REFERENCE POINTS, WHAT ARE EMPLOYMENT POINTS, SUBDIVIDE THIS WITHOUT DISABILITIES NOT JUST GLOBALLY BUT AT THE LEVEL OF DIFFERENT COUNTIES BECAUSE THOSE VARY. PICKING YOUR REFERENCE POINTS BECOMES VERY IMPORTANT. SO THAT'S AN IMPORTANT PLACE SOME OF THE RESEARCH WE HAVE IN QUEUE IS TRYING TO COLLECT BOTH OF THOSE INFORMATION AND THEN SAY ONE COMPARISON IS OTHER INDIVIDUALS AND THEIR SATISFACTION BUT ULTIMATELY WE ARE CONCERNED ABOUT INDIVIDUAL WHO HAS A JOB AND THEY'RE NOT SATISFIED WITH IT. THEY ALSO HAVE THEIR OWN POINT OF REFERENCE IF THAT MAKES SENSE. >> IN OUR TWO STUDIES WE WERE TAKING YOUTH IN THEIR LAST YEAR OF HIGH SCHOOL. SO IT WAS NOT A CASE OF LOOKING AT COMPARABLE NON-LABELED INDIVIDUALS WITH AUTISM WHO HAD BEEN OUT OF SCHOOL FOR A NUMBER OF YEARS. THESE ARE ALL INDIVIDUALS WHO ARE IN THEIR LAST YEAR AND THEY OPTED OUT OF THE LAST YEAR OF HIGH SCHOOL TO BE IN THIS NINE MONTH INTERNSHIP PROGRAM. POINT IS EXTREMELY WELL TAKEN. >> ONE CONCERN THAT I HAVE HONESTLY ABOUT THIS WHOLE AREA, THAT IS THAT WE ARE SENDING HOMOGENOUS EXPECTATIONS AN HOMOGENOUS GOALS FOR HETEROGENEOUS POPULATION. FOR EXAMPLE IN DATA THAT ARE REPORTED AT THE UPCOMING NSAR ACTUALLY SUSAN TALKED EARLIER ABOUT THE OUTCOMING POLICY BRIEF ON SUICIDALITY BUT THE FIRST BRIEF WAS ON EMPLOYMENT. AND DATA WE ARE COLLECTED FROM IN THE U.S. BY MATT WERNER STONY BROOK IN COLLABORATION WITH KAROLINSKA INSTITUTE AND STOCKHOLM AND CURRENT UNIVERSITY IN AUSTRALIA, THERE WERE INTERESTING AS PART OF THIS THEY CONDUCTED IN PERSON GROUPS AND THEY DID A SURVEY OF ADULTS WITH AUTISM AND SURVEY OF EMPLOYERS. ONE OF THE THINGS THEY FOUND SERVING THE ADULTS WAS THAT OVER ONE-THIRD OF THE INDIVIDUALS WITH AUTISM REPORTED THAT HAVING A FULL TIME JOB WOULD NEGATIVELY IMPACT THEIR QUALITY OF LIFE SO THIS IDEA THAT EVERYONE WITH AUTISM HAS TO STRIVE FOR FULL TIME EMPLOYMENT, A COMPARABLE ANALOGY IS HOUSING. WE SOMEHOW ACCEPT THE IDEA THAT NON-DISABLED CHILDREN MAY GRADUATE FROM COLLEGE AND HAVE TO MOVE HOME A FEW YEARS BUT SOMEHOW WHEN OUR YOUNG ADULTS WITH AUTISM HAVE TO LIVE AT HOME THAT'S CONSIDERED FAILURE. SO I JUST -- I WANT TO MAKE SURE THAT WE ARE NOT SETTING GOALS THAT ARE NOT NECESSARILY APPROPRIATE GIVEN THE HETEROGENEITY OF OUR POPULATION. >> JUST A COMMENT ON THAT, THAT LOGIC IS EMBEDDED IN THE WHOLE TRANSITION FOCUS THAT WE DO, WHERE AT ONE LEVEL IT'S NICE TO KNOW WHERE OUTCOMES FOR PEOPLE WITH DISABILITIES ARE RELATIVE TO PEOPLE IN THEIR COMMUNITY WHO DON'T HAVE LABELS. BUT ULTIMATELY THE BEST BAROMETER FOR THE SUCCESS OF TRANSITION SERVICES IS TRANSITION TO ADULTHOOD IS WHAT WAS THAT INDIVIDUAL'S PERSONAL GOALS IN THE AREA OF WORKING, LEARNING, LIVING AND DID THEY OBTAIN THOSE PERSONAL GOALS. SO THAT IS THE WAY YOU WOULD EVALUATE WHETHER SOMEBODY HAS SUCCESSFUL TRANSITION IS DID THEY OBTAIN THE IMPORTANT GOALS THAT WERE SET. BUT METRICS WE USE TO EVALUATE WHETHER SPECIAL EDUCATION IS EFFECTIVE OR INDICATORS DON'T ACCOUNT FOR WHAT DESIRED OUTCOME IS, THEY JUST PRESENT GLOBALLY WHAT ARE EMPLOYMENT RATES OR COLLEGE RATES. SO WHAT I HEAR YOU CALLING FOR IS CONSIDERATION OF DOES THE PERSON'S ASPIRATION'S BECOME REALIZED AND ARE WE COLLECTING ON DATA ON THAT AS WELL? >> ACCORDING TO THIS DATA THAT'S PRESENTED NEXT MONTH A THIRD OF INDIVIDUALS DON'T SHARE THE GOAL THAT FULL TIME EMPLOYMENT IS NECESSARILY GOING TO IMPROVE THEIR QUALITY OF LIFE. OTHER THINGS THAT REPORTED THAT THEY'RE NOT NECESSARILY INTERESTED IN PROMOTIONS OR MOVING FROM FROM PART TIME TO FULL TIME WORK. THEY'RE HAPPY WITH PART TIME WORK WITH INCREASE NUMBER OF HOURS THAT WE USE AS A METRIC DOES NOT NECESSARILY APPLY TO WHAT INDIVIDUALS WITH AUTISM ARE REPORTING IS HOW THEY MEASURE THEIR QUALITY OF LIFE. I'M JUST CONCERNED HOW WE ARE MEASURING OUR SUCCESS HERE AND WHETHER OR NOT WE ARE APPLYING GOALS NOT NECESSARILY THE GOALS OF THE INDIVIDUALS THEMSELVES. >> I HEAR YOU ON THAT. WE LIVE IN A DEMOCRACY, WE LIVE IN AN OPPORTUNITY FOR PEOPLE TO HAVE FREE WILL TO WORK IF THEY CHOOSE. OUR JOB, MY JOB IS TO MAKE THAT WORK AN OPPORTUNITY. IN THE WORLD I LIVE IN, PEOPLE WITH AUTISM NOBODY THINKS THAT CAN WORK. THE PEOPLE THAT I WORK -- WITH THE LEVEL OF AUTISM. WHEN MOMS AND DID HEAR THAT IS AN OPPORTUNITY TO WORK, EVEN IN PART TIME BECAUSE OF THE SOCIAL SECURITY CLIFF THEY'RE FIGHTING TO GET INTO IT. ONCE YOU GET 30, 40, 50, YOU'RE LIKE I DON'T WANT TO WORK ANY MORE, FREE WILL. FIGURE HOW YOU'RE GOING TO CHANGE YOUR LIFESTYLE IF YOU DON'T HAVE MONEY COMING IN. FIGURING HOW TO CHANGE YOUR LIFESTYLE IF YOU DON'T HAVE OTHER HOBBIES. IF I DON'T WORK I'M IN REAL TROUBLE. I HAVE NO OTHER FRIENDS. I HAVE TOO WORK. BUT IF I PLAY POKER AND GOAL AND ALL THE THINGS IT DOES ALL THE TIME, I'M SURE I WOULD BE LYING TO WORK 20% OF THE TIME. SO I DON'T DISAGREE WITH YOU, IT'S JUST THAT THIS IS A PANEL ABOUT HOW TO GET PEOPLE TO WORK. AND OPPORTUNITIES. WHAT ARE THE OPPORTUNITIES. >> I THINK WE CAN PROBABLY AVOID ARGUING WHETHER FREE WILL EXISTSER NOT. JUST CORRECT, PANEL ABOUT MAXIMIZING OPPORTUNITY TO WORK AND I THINK THESE OTHER ETHICAL QUESTIONS ABOUT IF WE CAN GET PEOPLE TOLL WORK WHETHER WE SHOULD REQUIRE THEM ECONOMICALLY GET THEM TO WORK, THAT'S A DIFFERENT STORY WE MAY WANT TO STAY AWAY FROM THAT. BUT SAM I BELIEVE YOU HAD YOUR HAND UP NEXT. ARE YOU INTERESTED IN MAKING COMMENTS? >> COUPLE OF SMALL POINTS. I JUST WANT TO GET BACK TO REALLY SURPRISING FINDINGS ABOUT GENDER AND INDEPENDENCE. I DON'T THINK I CAUGHT, I DON'T THINK I CAUGHT WHAT HOW YOU OPERATIONALIZE HOW DO YOU MEASURE INDEPENDENCE. I THINK THAT MIGHT BE INTERESTING. >> HAPPY TO TALK MORE ABOUT THAT. THAT WAS A REALLY LONG PROCESS. WE HAD NARRATIVE INFORMATION ABOUT WHAT PEOPLE WERE DOING FOR 400 PEOPLE OVER TEN YEARS. TO TAKE THAT AND PUT INTO SOMETHING THAT YOU CAN ACTUALLY SORT OF MAKE APPLES AND APPLES AND ORANGES TO ORANGES COMPARISON WAS A SIGNIFICANT AMOUNT OF WORK. SO WHAT HAPPENS A LOT OF TIME IS IT'S COLLAPSED DOWN TO EMPLOYMENTED OR NOT EMPLOYMENTED BUT THAT COMBINES -- EMPLOYED OR NOT EMPLOYED, THAT'S 30 HOURS A WEEK INDEPENDENT THAN SOMEBODY WHO IS IN MORE SEGREGATED SETTING AND THAT'S COMPLICATED TOO SO WE DEVELOPED THIS NINE POINT RATING SCALE HOW INDEPENDENT THE POSITION WAS. THE MOST INDEPENDENT BEING WORKING IN THE COMMUNITY WITHOUT ANY SUPPORTS OR POST SECONDARY EDUCATIONAL PROGRAM, IF THEY WERE DOING THOSE THINGS FOR MINIMAL HOURS IT WAS DOWN ONE POINT, SUPPORTED EMPLOYMENT WAS BELOW THAT. THAT WAS A LOT OF VARIATIONS SHELTERED WORK. SOME WERE IN SHELTERED POSITIONS AND WORKING OUT IN THE COMMUNITY SO THAT GOT A HIGHER SCORE THAN SOMEBODY ONLY IN SHELTER POSITIONS AND THEN AT THE VERY BOTTOM PEOPLE WHO HAD NO ACTIVITIES AT ALL. WE WENT THROUGH THIS INCREDIBLY EXECUTIONIATING PROCESS. IT'S THE AMOUNT OF INDEPENDENCE INHERENT IN THAT BUT THE GENERAL FINDINGS WERE A SURPRISE TO US AND AFTER THAT WORK WE ARE GOT A SMALL GRANT RO 3 TO DIG INTO LARGE DATA SETS THAT HAD ENOUGH WOMEN TO PULL THEM OUT TO GET SOME IDEAS ABOUT WHAT MIGHT BE GOING ON THAT THEN WE COULD DOWN THE ROAD LOOK AT IN A MORE HYPOTHESIS DRIVEN WAY. SO WE FOUND A COUPLE OF THINGS THAT ARE INTERESTING. USING DATA FROM INTERACTIVE AUTISM NETWORK DATA SET WE FOUND MEN AND WOMEN WERE WORKING AT THE SAME RATES. BUT WHEN PEOPLE WERE NOT WORKING, THE WOMEN WERE THREE TIMES MORE LIKELY THAN MEN, THEY WERE CHOOSING NOT TO WORK. THAT'S THE SAME CASE WOMEN WHO HAD CHILDREN LIVING AT HOME, IT DIDN'T SEEM TO AMONG THE WOMEN WITH AUTISM, WE ARE ALSO FINDING WHEN WE LOOK AT AUTISM SYMPTOM SCORES, IF WE LOOK AT RAW SCORES OF SYMPTOMS AMONG -- THIS WAS A DIFFERENT DATA SET, AMONG ADOLESCENTS THE RAW SYMPTOM SCORES ARE THE SAME BUT THE SEX AND AGE NORM SCORES ARE DIFFERENT. SO WOMEN ON RAW SCORES LOOK SIMILAR TO THE MEN, BUT WHEN YOU COMPARE THEM TO THE NORM TO TYPICALLY DEVELOPING PIERCE THEY'RE MUCH MORE IMPAIRED THAN THE MEN DO RELATIVE TO THEIR TYPICALLY DEVELOPING PEERS. SO YOU CAN THINK ABOUT WHAT MIGHT THE IMPACT OF THAT BE OVER LIFE COURSE IF THE SAME AUTISM SYMPTOMS MAKE A PERSON DIFFERENT FROM THEIR PEERS, SO WE HAVE SOME HYPOTHESES ABOUT THESE, WE ARE LOOKING AT ELECTRONIC HEALTH RECORDS TOO SHOWING THERE'S HIGHER DISEASE BURDEN OF DISEASE AMONG WOMEN WITH AUTISM SO WE ARE RIGHT NOW MINING DATA SETS TO PUT A PICTURE TOGETHER AND DEVELOP HYPOTHESES WHAT THE UNIQUE NEEDS MIGHT BE. >> I WAS GOING TO SAY THAT IT MIGHT BE HEALTH ISSUES WHAT ALLISON WAS TALK ABOUT, ANECDOTEICALLY I KNOW AUTISTIC WOMEN WHO DEVELOP SIGNIFICANT HEALTH CHALLENGES AS THEY AGE AND THEY MIGHT DECIDE I'M TOO TIRED TO WORK. BUT IT'S NOT THAT I CAN'T ACCESS -- NOT THAT I'M NOT SKILLED, NOT THAT I'M ABLE TO ACCESS THE WORKPLACE BUT I'M JUST TIRED. AND MAYBE I DON'T WANT TO WORK FULL TIME OR I DON'T WANT TO WORK AT ALL. THE POINT YOU MADE ABOUT COMPARISON TO PEERS, I GUESS PEOPLE IT'S POSSIBLE PEOPLE ARE GETTING DISCOURAGED. THEY SEE THEIR PEERS LIKE MOVING UP THE LADDER IN VARIOUS WAYS IN THE WORKPLACE AND THEY DON'T. SO I THINK THOSE ARE YOU ARE I'M GLAD YOU ARE LOOKING INTO THAT MORE AND LOOK FORWARD TO HEARING WHAT YOU FIND. >> I'M CURIOUS IF PANELISTS -- BEFORE I SAY ANYTHING, LET ME ASK, ANYBODY ON THE PHONE WHO HAS QUESTIONS OR COMMENTS? >> I'M CURIOUS IF THE PANELISTS EACH MIGHT COMMENT ON ISSUES OF SUSTAINABILITY AND OF COST EFFECTIVENESS IF YOU WILL. WHEN WE HEARD FROM SAP, THAT MAKES SENSE FOR A COMPANY. THEY ARE GETTING HIGH VALUE OUT OF TECHNOLOGICALLY SAVVY COMPARED INDIVIDUALS THAT COME TO WORK FOR THEM AND THEY CAN FIND WAY TO GET THEIR PLACE, THAT'S HIGH VALUE PROPOSITION, THAT'S DIFFERENT QUESTION FROM SUPPORTING EMPLOYMENT IN A LIBRARY OR SOMETHING LIKE THAT. OF COURE THERE'S A SPECTRUM IN BETWEEN THOSE. I'M WONDERING IF YOU HAVE SOME THOUGHTS ABOUT SUSTAINABILITY IN EACH OF THE DIFFERENT MODELS THAT YOU MIGHT COMMENT ON. >> MAYBE I'LL START ON THE TYPES OF COMPANIES I'M WORKING WITH, THAT IS THE CRITICAL QUESTION EVEN THE TECHNOLOGY FIRMS ARE FRAPPING WITH -- GRAMMING WITH, SUSTAINABILITY Z YOU INCREASE THE NUMBER OF EMPLOYEES AND ACROSS SUCH DIVERSITY OF COUNTRIES AND OFFICES, THE BUILDING CAPACITY WITHIN THE ORGANIZATION TO WORK EFFECTIVELY AND DESIGN THE WORK EFFECTIVELY IS STILL PRETTY HIGH. THAT'S THE EMPIRICAL QUESTION, OPEN QUESTION HOW YOU DO THAT. SO SOME OF THE MODELS I SEE EVOLVE FROM THE MORE MATURE PROGRAMS HOW DO SELF-ADVOCATES BECOME MORE INVOLVED IN TRAINING, HOW DO HR PERSONNEL THAT ALREADY EXIST ARE CROSS TRAINED ACROSS A DIVERSITY OF SKILLS SETS AND POPULATIONS AND SERVING UNDERSERVED EMPLOYEES. WHAT ARE THE OTHER ELEMENTS IN THE QUESTIONS THAT I HAVE EVEN PREPARING THE ORGANIZATION TO SUPPORT CHALLENGING WITH MENTAL HEALTH AND PHYSICAL HEALTH AND ONE QUESTION CAME ABOUT REGARDING WHAT OTHER SERVICES CAN WE PROVIDE, IN MY INTERVIEW WITH -- I SEE FEMALES ON THIS SPECTRUM IN THE TECHNOLOGY INDUSTRY AND NUMBER SAID I CHOOSE SOME OF MY COMPANIES AROUND THE COMPANIES AROUND SERVICES LIKE FOOD AND ALL THESE OTHER THINGS THAT ARE ALREADY PROVIDED LIKE THE GOOGLE EXAMPLE. SO COMPANIES ARE REALLY LOOKING AT FOR SCALABILITY AND SUSTAINABILITY OF THE PROGRAM, TWO THINGS, ONE YOU HAVE TO CREATE THE BUSINESS CASE LIKE JOSE MENTIONED, THE OTHER THING IS BUILDING INTERNAL CAPACITY OF INDIVIDUALS THAT ARE CROSS TRAINED TO SERVE A BROADER POPULATION. AND TO EMBED POTENTIALLY WITH THE BROADER DIVERSITY AND INCLUSION EFFORTS AS WELL. SO I THINK THAT IS ESSENTIAL FOR SUSTAINABILITY. AND I WOULD ADD, THIS IS ANOTHER EMPIRICAL QUESTION, IDENTIFYING THOSE UNIVERSAL PRINCIPLES ACROSS THE ORGANIZATION THAT SERVES A LARGE POPULATION. >> SO I THINK THE SHORT ANSWER AGAIN, BECAUSE IT IS SUCH A WIDE RANGE OF ISSUES AND CHALLENGES THAT PEOPLE WITH AUTISM SPECTRUM DISORDERS FACE ACROSS THE WHOLE SPECTRUM TO SAY THERE'S ONE SIZE FITS ALL IS DIFFICULT. THE CLOSEST THING THAT I CAN SEE THAT WOULD FOLLOW UP ON WHAT HALA SAID IS PROBABLY A PEER TO PEER MEANING BUSINESS TO BUSINESS COMMUNICATION ABOUT WHICH MODELS ARE WORKING THE BEST FOR THEM, IS THE LONG TERM WAY TO MOVE IN TO WHAT I GUESS I WOULD CALL THE SECOND PHASE. THIS PHASE WE ARE IN NOW, SAY IN THE FIRST TWO OR THREE INNINGS OF LOOK WHAT WE DID, WE'RE ABLE TO DO THIS, THIS IS GREAT. WE COULDN'T DO IT 20 YEARS AGO, NOW WE COULD DO IT. WE CAN GIVE MOMS AND DADS HOPE APPROXIMATE AND FAMILIES HOPE, THOSE WHO WANT TO WORK WE CAN GIVE THEM HOPE AND IDEAS OF CHAMPIONS. BUT HOW DO YOU GET TO THE FOURTH TO THE SEVENth OR FIFTH THROUGH EIGHTth INNING? IT'S LIKE HAVING RANDY LEWIS FROM WALGREEN'S COME IN AND TALK TO PEOPLE LIKE HE DID IN 2010 AND HE'S GOING TO COME IN TOMORROW. FOR THE SECOND TIME TO TALK DOMINION POWER. THAT'S THE FIRST UTILITY COMPANY THAT WOULD BE BUYING INTO THIS IN A BIG WAY FOR THEIR ROLL OUT WHICH IS STARTING TOMORROW. IF DOMINION CAN DO IT, MAYBE SOME OTHER UTILITY COMPANIES WILL DO IT. IT STILL DOESN'T GET THE SOLUTION TO JOHN'S QUESTION NOW, I CANNOT GET AWAY FROM THE FACT THAT IF YOU DO NOT GET COMPANIES TO STAFF THEIR HR DEPARTMENTS IN SUCH A WAY THEY KNOW HOW TO DEAL WITH PEOPLE WHO ARE DIFFERENT, I MEAN, EVERYBODY IS DIFFERENT, THAT'S THE THING, IT'S NOT JUST -- I MEAN, I WOULD LIKE TO SAY PEOPLE WITH AUTISM HAVE THE CORNER ON IT, THEY DON'T. IF YOU FAULK TO ANY EMPLOYERS AT THE SENIOR MANAGEMENT, FIRST LINE SUP SRISOR LEVEL THEY WILL TELL YOU GIVE YOU EVERY STORY IN THE WORLD AND SAY THE LAST THING WE ARE CONCERNED ABOUT IS THE FACT THIS PERSON MAKES FUNNY NOISES OR JUST SOMETHING ONCE IN A WHILE. THE WORKPLACE ENVIRONMENT WILL OFTEN DEFINE HOW A PERSON IS GOING TO BE ACCEPTED OR NOT. SO REALLY ULTIMATELY TO GET TO THE SECOND PHASE OF YOUR QUESTION, THE COMPANIES ARE GOING TO HAVE TO COMMUNICATE WITH EACH OTHER, AND THEN USE THE RESOURCES IN THE COMMUNITY THAT ARE FUNDED SELECTIVELY. WHEN YOU PUT UP YOUR SLIDE AT THE END AND YOU HAD THOSE GRAPHS ON ONE SIDE AND THE GRAPHICS IN MIDDLE AND EXTERNAL JOB COACH, WELL, THAT'S REALLY THE EXTERNAL JOB COACH SHOULD BE -- THEY SHOULD BECOME EMPLOYMENT CONSULTANTS, CALLED IN PERIODICALLY. THEY SHOULDN'T BE RUNNING EVERYTHING. THIS COMES FROM SOMEBODY THAT I œHAVE BEEN PUSHING THIS 20, 30 YEARS AND I'M CONVINCED IT WILL NEVER WORK THIS WAY, YOU GOT TO GET THE COMPANIES BOUGHT IN. AND I AM SEEING SOME COMPANIES BUY IN BUT NOWHERE NEAR THE LEVEL THAT WE HOPE. >> I WOULD LIKE TO HEAR FROM ERIK FIRST BECAUSE HE RUN AS STATEWIDE SYSTEM TRYING TO DO THIS. >> WE ARE TURNING THIS QUESTION BACK TO LOCAL COMMUNITIES. COMMUNITIES THAT DON'T HAVE LARGE CORPORATIONS THAT CAN'T TURN TO A SERVICE SYSTEM OR GRANT FUNDING OR ANYTHING THAT REQUIRES ELIGIBILITY REQUIREMENTS TO FIGURE HOW TO DO THIS AT LOCAL COMMUNITY WITH THE ASSETS YOU ALREADY HAVE. HOW DO YOU ENGAGE YOUR CHAMBERS OF COMMERCE AND AFFINITY GROUPS AND ROTARY CLUBS AND FAITH COMMUNITIES AND OTHERS TO FIGURE OUT HOW YOU MAKE IT HAPPEN WHEN THERE IS NO EXTERNAL FUNDING OR WORK BROUGHT COOPERATION. YOU BRING THE RIGHT PEOPLE IN, PEOPLE OUTSIDE THE CIRCLES WHO ARE NOT GOING TO THINK IN TERMS OF SOLUTIONS OF SERVICE SYSTEMS OR ELIGIBILITY OR WHAT DIAGNOSIS YOU HAVE TO GET HELP BUT COMMUNITY THAT KNOWS PEOPLE, IT'S SURPRISING HOW THEY FIGURE THINGS OUT. SO BOTH OF THESE HAVE TO HAPPEN CONCURRENTLY. BUT FOR US WE ARE TRYING TO FIGURE HOW TO GET EMPLOYMENT OUTCOMES TO GO UP WHEN THERE IS NO SERVICE SYSTEM THAT WILL SUPPORT IT REALLY WELL. THAT'S WHERE WE ALSO NEED INNOVATIONS AS WELL. THAT EAT THE COMMUNITY CONVERSATION APPROACH WE ARE USING. >> JUST TO CLARIFY, THE EXTERNAL COACH IS TEMPORARY IT'S ONLY FOR THE FIRST PHASE FOR ON BOARDING UNLESS THERE'S A NEED LATER ON, THAT'S ESPECIALLY FEDERALLY SUPPORTED IS ONLY DEPENDING ON THE NEEDS IS TEMPORARY. AND THE ORGANIZATIONS ARE TAKING A LOT OF RESPONSIBILITY INTERNALLY IN BUILDING THE INTERNAL CAPACITY, THE EMPLOYER ROUND TABLE THAT I MENTION DOES -- THE INTENTION OF THAT IS JUST THAT TO EXCHANGE BEST PRACTICES AND HELP NEWER COMPANIES THAT ARE INTERESTED. YOU SEE IBM ON THERE, IBM IS NEW PROGRAMS ONLY AROUND FOR A YEAR AND THE WAY THAT WAS DESIGNED AND ESTABLISHED IS BY SUPPORT FOR EXISTING FIRMS LIKE SAP AND MICROSOFT AND OTHERS AS WELL AS PROVIDERS. I DON'T KNOW WHO TO USE SPECIFICALLY TO DO THAT DESIGN AND BUILD THE INTERNAL CAPACITY. SO I THINK THAT MODEL I AGREE WITH YOU WHOLEHEARTEDLY, PAUL, IT HAS TO BE CHANGE AND CAPACITY BUILD WITHIN THE ORGANIZATION AND WE ARE STARTING TO SEE THAT. BUT I THINK THERE ARE A LOT OF UNANSWERED QUESTIONS, THAT ALSO THE ACADEMIC COMMUNITY HAS TO ENGAGE IN TO SEE WHAT ARE THE BEST PRACTICES THAT ARE WORKING AND WHAT ARE SOME THAT ARE NOT WORKING. >> GOOD POINTS BUT THE CHALLENGE IS -- HERE IS THE CHALLENGE. A LOT OF COMPANIES WILL ON BOARD AND THEY WANT TO RECRUIT AND WANT TO BRING PEOPLE IN. THEN THEY HIRE THEM AND THEN THEY CAN'T GET PAST THE RED ZONE, THE FIRST 490 TO 100 DAYS, -- 90 DAYS. AT 12 MONTHS YOU ARE FLYING. SO THEY HAVE A PROBLEM NOT HAVING -- >> SO THAT GETS TO MY QUESTION ABOUT SUSTAINABILITY COST EFFECTIVENESS. SO I MEAN YEAH IF YOU HAVE GOT SOMEONE WHO IS GOING TO GO ON AGAIN WORK IN SOME OTHER HIGH SHALL INDUSTRY, PULL DOWN SALLY OF 100K A CLEAR, IT MAKES TOTAL ABSOLUTE SENSE FOR A COMPANY TO INVEST TENS OF THOUSANDS OF DOLLARS EVEN $100,000, ON BOARDING SOMEONE GIVEN HOW VALUABLE THAT EMPLOYEE CAN BE OVER TIME BUT FOLKS WORKING FOR MINIMUM WAGE IN THE HOSPITAL SYSTEM, THAT'S A WHOLE DIFFERENT ECONOMIC PLOP SIGNATURES AND YOU NEED -- PLOP SIGNATURES. YOU NEED -- PROPOSITION. YOU -- AUTISM REACHED THEIR MAXIMUM CAPACITY TO CONTRIBUTE TO SOCIETY FROM THE PERSPECTIVE OF ENABLING THEM TO LIVE FULFILLING AND MEANINGFUL LIVES FOR THEMSELVES. ABSOLUTELY WE WANT TO DO THAT. BUT IF YOU WANT TO MAKE THE CASE TO SOCIETY, CORPORATIONS TO GOVERNMENT, SUPPORTED EMPLOYMENT OR SUPPORTED TRANSITIONS INTO EMPLOYMENT OR GETTING THEM PAST RED ZONE, #th INNING OR WHATEVER SPORTS METAPHOR TO USE, IS SOMETHING WE WANT TO INVEST IN COST EFFECTIVENESS HAS TO BE THERE, IT DOESN'T HAVE TO BE BIG BUT IT HAS TO BE THERE. >> CONSIDER THE ALTERNATIVE, IF YOU DON'T GO TO WORK YOU'RE GOING TO GO ULTIMATELY -- >> MY POINT IN SAYING IS THE MATH IS USUALLY IN YOUR FAVOR FOR MINIMUM WAGE IF YOU CAN MANAGE YOUR TRANSITION SO THEY DON'T -- THE -- BUT WE NEED TO ESTABLISH THE EVIDENCE BASE FOR IT. AND JUST LIKE WE DO FOR COST EFFECTIVE TREATMENTS WHEN WE WANT TO OFFER THEM AND HAVE HEALTH INSURANCE OR CMS PAY FOR THEM. >> LEWIS. BRIEF QUESTION, WHETHER YOU HAVE GIVEN THOUGHT TO RESILIENCY AT A TIME, THIS IS A TIME WHEN THE ECONOMY IS GOOD. UNEMPLOYMENT IS GENERAL THROUGH LOW. -- GENERALLY LOW. THIS WILL NOT LAST FOREVER WE KNOW. THE SECOND QUESTION, WHEN YOU'RE DEALING WITH A WHOLE STATE YOU FIND THAT ACCEPTABILITY AND BUY IN DEPENDS ON WHAT THE UP EMPLOYMENT LEVELS, PROBABLY WILDLY DIFFERENT UNEMPLOYMENT LEVELS AND DIFFERENT PARTS OF THE STATE. FROM >> WELL, I WILL LET YOU ANSWER THE STATE. WE DO KNOW WHENEVER WE HAVE HAD THE ECONOMIC DOWNTURNS, 1990, 2000, 2008, YOU CAN ALMOST ALWAYS SIGH SEE A DROP, GENERAL POPULATION WITH DISABLES WILL EARN LESS, WILL BE AMONG THE FIRST TO LOSE JOBS FREQUENTLY THAT'S THE CURRENT WAY WE ARE RIGHT NOW. THAT'S WHAT I HAVE SEEN NATIONALLY. >> WE TRACK OUR STATE DATA OVER TEN YEARS AND PATTERN OF EMPLOYMENT FOR PEOPLE WITH AND WITHOUT DISABILITIES THE GAP BETWEEN THE TWO IS EXACTLY THE SAME AS IT RIDESES AND FALLS, WE ARE SEEING THAT EXACTLY. SO OUR EMPLOYMENT RATES ARE UP NOW FOR PEOPLE WITH DISABILITIES FOR EVERYONE ELSE, WE ARE LOOKING COUNTY BY COUNTY WHERE THAT GAP HAS ELEVATED WHETHER WE ARE SEEING SLOWER MOVEMENT AROUND DISABILITY THAN THOSE WHERE IT'S -- >> THE REAL QUESTION CAN WE DISRUPT THAT, CAN WE DISRUPT THAT. IN OTHER WORDS I CAN TELL YOU NOW, THAT THE PEOPLE THAT I SHOWED YOU A NUMBER OF THEM HAVE BEEN EMPLOYED NOW SEVERAL YEARS. THEY ARE NOT THE FIRST ONES OUT BECAUSE THEY HAVE BETTER PRODUCTIVITY RATES, YOU HAVE A WHOLE PHARMACY IF YOU IDENTIFY -- IF YOU DON'T IDENTIFY WHICH ARE EXPIRED DRUGS, SOMEBODY WILL DIE BECAUSE THEY GET VEININGMYCIN THAT'S EXPIRED. THEY PAY ATTENTION TO THE VALUE OF PEOPLE SHOWING THERE AND MADE A DECISION ON THAT BASIS. THAT'S THE MINORITY. THIS IS -- WE'RE IN THE EARLY INNING ON THIS. WE ARE VERY MUCH IN THE EARLY INNINGS ON THIS. >> WE HAVE TO TAKE A BREAK. THANK YOU SO MUCH TO THE PANELISTS FOR THEIR REALLY SCINTILLATING DISCUSSIONS AND ON THIS INCREDIBLY IMPORTANT ISSUE. THANK YOU AS USUAL, MEMBERS OF THE COMMITTEE, FOR YOUR QUESTIOS AND COMMENTS. AS WE MOVE FORWARD IT'S IMPORTANT FOR US TO THINK ABOUT RECOMMENDATIONS THAT IACC WANTS TO MAKE IN THIS TOPIC AREA. AND AS WE THINK ABOUT NEXT YEAR'S UPDATES. THANK YOU VERY MUCH. [APPLAUSE] >> WE ARE GOING TO TAKE A 15-MINUTE BREAK, COME BACK AT 4:15. WE'LL BE RUNNING FIVE MINUTES BEHIND SCHEDULE, SHOULD BE ABLE TO MAKE IT UP BEFORE 5 O'CLOCK. PLEASE BE HERE 4:15 SHARP. I WANT TO THANK THE PANEL AND THE COMMITTEE FOR AN OUTSTANDING DISCUSSION ON EMPLOYMENT. NEXT UP WE HAVE AN UPDATE FROM THE NATIONAL AUTISM COORDINATOR, DR. ANN WAGNER. >> HI H THANK YOU, EVERYBODY. I'M GOING TO MAKE THIS BRIEF. JUST AS A CONTEXT AND REMINDER THAT I'M NOT GOING TO GO THROUGH ALL OF THIS BUT WE HAVE A FEDERAL INTERAGENCY WORK GROUP ON ASD WHICH WE CALL FWA, WITH LOTS OF REPRESENTATION FROM DEPARTMENT OF HEALTH AND HUMAN SERVICES, OTHER FEDERAL DEPARTMENTS AND AGENCIES AND I'M NOT GOING THROUGH THIS BUT I WANTED YOD TOW HAVE THIS IN YOUR MATERIALS IN CASE YOU'RE CURIOUS WHO IS PARTICIPATING. I WANT TO UPDATE YOU ON A COUPLE OF THINGS WE HAVE BEEN DOING SO ONE OF THEM IS A MEETING ON OUTCOME MEASURES FROM TRANSITIONING YOUTH AND ADULTS WITH ASD AND SUSAN ALLUDED TO THAT EARLIER. A LOT OF THE THINGS WE HEARD IN THIS MEETING ARE REFLECTING THINGS WE WERE HEARING TODAY. YOU ARE FAMILIAR WITH A 2017 REPORT TO CONGRESS ON YOUNG ADULTS TRANSITIONING YOUTH WITH AUTISM SPECTRUM DISORDERS. THIS REPORT IDENTIFIED A GAP WHICH IS A NEED FOR SURVEY OR OTHER KINDS OF RESEARCH RESULTS ON THE OUTCOMES OF YOUTH TRANSITIONING YOUTH AND ADULTS WITH ASD BUT ALSO NOTED THAT IN ORDER TO HAVE GOOD DATA COMING FROM THAT RESEARCH AND THOSE SURVEYS YOU NEED OUTCOME MEAURES IN ORDER TO EVALUATE THE -- ANY POTENTIAL CHANGES IN PROGRAMS AND SUPPORT SERVICES THAT WE HAVE. THE NEED IS IN ADDRESSING WHAT THE REPORTS REFERSES TO BROADLY AS QUALITY OF LIFE BUT THE POINT WAS THAT IT'S NOT -- WE DON'T NEED MORE -- THEY WERE NOT TALKING SPECIFICALLY ABOUT MEASURES OF SYMPTOMS, FOR INSTANCE, OR ACCOUNTS OF WHO HAS A JOB AND WHO DOESN'T HAVE A JOB BUT HAS OUT OF SITE PEOPLE ARE WITH THE WAY THEIR LIFE IS TURNING OUT AND HOW INTEGRATED THEY ARE IN THE COMMUNITY. WITH OUR DISCUSSION IN THE MEETING ABOUT GAPS IN THIS NEED WE IDENTIFIED SOME RESEARCHERS WORKING IN THIS AREA, WHO ARE SUPPORTED BY GRANTS. PROGRAMS WE IDENTIFY SOME PEOPLE SUPPORTED BY DEPARTMENT OF DEPARTMENT OF DEFENSE, ADMINISTRATION ON COMMUNITY LIVING AND NIH, THIS WAS BY NO MEANS MEANT TO REPRESENT EVERYBODY WORKING IN THIS AREA BECAUSE WE KNEW THESE FOLKS WE INVITED THEM TO A SPECIAL MEETING WITH THE SUBCOMMITTEE ON MARCH 19th. WE HAD A SPECIAL MEETING IN WHICH WE HEARD ABOUT THEIR CURRENT EFFORTS AND THEIR IDEAS ABOUT WHAT NEEDS TO HAPPEN NEXT. THESE ARE THE PRESENTERS, PEOPLE WHO CAME TO TALK WITH US. TWO KRISTINA AND NICOLITIS AND NANCY COME FROM THE HEALTH SERVICES RESEARCH AREAS. GAIL WHITENECK AN MARK SELSER COME FROM REHABILITATION COMMUNITY INTEGRATION RESEARCH AREAS AND THESE REASON TWO FIELDS THAT NECESSARILY INTERACT AND TALK WITH EACH OTHER, THEY HAD VERY DIFFERENT PERSPECTIVES AND APPROACHES. BUT A LOT OF COMMON GROUND SO IT WAS VERY INTERESTING MEETING AND DISCUSSION. THE RESULTS WOULDN'T BE A SURPRISE TO ANYBODY, WE NEED MORE WORK IN THIS AREA. THERE ARE LOTS OF TALKS ABOUT SPECIAL CHALLENGES TO MEASURING OUTCOMES AND SATISFACTION WITH OUTCOMES IN THE POPULATION RELATED TOP HETEROGENEITY, COMMUNICATION PROBLEMS, THINGS WE HAVE BEEN TALKING ABOUT TODAY. AS WELL AS THE NEED TO HAVE INPUT FROM PEOPLE ON THE SPECTRUM. IN TERMS OF DEVELOPING AND ADAPTING MEASURES. SO THIS GROUP WE'RE FOLLOWING UP WITH THIS GROUP BECAUSE WE WANT THEM TO DISSEMINATE THEIR RECOMMENDATIONS AND THEIR IDEAS MORE WIDELY. SO'S A PLAN TO PUT TOGETHER A DOCUMENT PROBABLY IN THE FORM OF A WHITE PAPER PUBLICATION SO WE CAN GET THE WORD OUT THROUGH THE FIELD THAT WE'RE INTERESTED AND FOLLOWING UP ON THIS MEETING WILL BE ON THE AGENDA OF OUR NEXT FWA MEETING SO WE CAN TALK INTERNALLY ABOUT WAYS TO FACILITATE RESEARCH IN THIS AREA. THEN THE OTHER THING I JUST WANTED TO NOTE THERE'S A LOT OF INTEREST IN THE GOVERNMENT NOW IN SUPPORTING TRANSITION OF ADOLESCENCE TO ADULTHOOD SMOOTHLY, VERY BROADLY ACROSS THE POPULATION. THIS HAS AFFORDED US SOME OPPORTUNITY TO COLLABORATE WITH SOME OTHER GROUPS AND PARTNERS WHICH I THINK IS REALLY IMPORTANT AND WILL HELP US AVOID DUPLICATION EFFORTSER OR ONGOING EFFORTS AND GET UNIQUE NEEDS OF THE ASD COMMUNITY CONSIDERED AMONG LARGER EFFORTS, SO THREE OF THEM THAT I WANTED TO MENTION, THERE'S FEDERAL PARTNERS IN TRANSITION GROUP THAT'S BEEN IN EXISTENCE SINCE 2005, THIS GROUP IS LED BY DEPARTMENT OF LABOR, SOCIAL SECURITY AND DEPARTMENTS OF EDUCATION. IT WAS A LOT OF OVERLAP BETWEEN IACC AND SOME OF THESE GROUPS IN TERMS OF THE DEPARTMENTS AND AGENCIES REPRESENTED. SOMETIMES THEY'RE THE SAME PEOPLE, BUT NOT ALWAYS. BUT THIS GROUP FEDERAL PARTNERS AND TRANSITION IS GUIDED BY THEIR 2020 FEDERAL YOUTH TRANSITION PLAN. THEIR GOAL IS TO IMPROVE TRANSITION OUTCOMES FOR YOUTH WITH FACILITIES. ONE OF THE THINGS WE ARE TALKING ABOUT IN A RECENT MEETING WERE EFFORTS TO FACILITATE AND SUPPORT DEVELOPMENT OF INTERNSHIP PROGRAMS, FOR INSTANCE. THAT WAS RELEVANT TO THINGS WE HAVE BEEN TALKING ABOUT TODAY. WITHIN NIH SINCE LAST YEAR THERE'S A NIH CONSORTIUM LED BY NICHD, DIANENA BIANCHI IS CO-CHAIR OR CHAIR. SO THEY ARE LOOK AT PEDIATRIC RESEARCH BROADLY, A PROD MIX BUT THEY HAVE A SUBGROUP FOCUSING ON ADOLESCENT TRANSITION TO ADULTHOOD AND WE LEARNED OF THIS BECAUSE ONE OF OUR FQA MEMBERS GAVE A PRESENTATION TO THAT GROUP AND LET THEM KNOW ABOUT OUR OUTCOMES MEASURES MEETING SO THEY ASKED IF THEY COULD SEND PEOPLE TO THE MEETING. SO THERE'S A LOT OF THERE AS WELL. AND FINALLY THERE'S HHS, THERE'S RECENT EFFORT TO COORDINATE EFFORTS ON YOUTH AND TRANSITION WITHIN HHS SO ELIZABETH CHAI ADMINISTRATION FOR COMMUNITY LIVING INITIATED A MEETING TO COORDINATE HHS ACTIVITIES AND FOCUS ON HEALTHCARE TRANSITION FOR YOUTH. AND PARTICULARLY THOSE WITH DISABLES AND SPECIAL HEALTHCARE NEEDS. SO THAT'S THE THIRD. THESE ARE GOOD OPPORTUNITIES TO AGAIN COORDINATE, LEVERAGE THINGS ONGOING NOW AND MAKE SURE THAT NEEDS UNIQUE NEEDS OF ASD COMMUNITY ARE TABLE IN THESE LARGER EFFORTS. THANK YOU. [APPLAUSE] >> ARE THERE QUESTIONS FOR ANN? OR COMMENTS? ON THE PHONE? OKAY. WE'LL MOVE TO THE NEXT SEGMENT, THE NEXT SEGMENT IS BACK TO COMMITTEE BUSINESS PARTICULAR THE 2019 SUMMARY OF ADVANCES NOMINATION, IF YOU RECALL, AT EACH MEETING WE GO OVER THE NOMINATIONS THAT WERE SENT IN BY YOU OVER THE PRECEDING -- SINCE THE LAST MEETING, THESE ARE JANUARY THROUGH APRIL. THESE ARE PRELIMINARY PRESENTATIONS BRIEF OF THE -- ANY PARTICULAR NOMINATED PAPERS THAT YOU WOULD LIKE TO HIGHLIGHT. AND THEN AS YOU KNOW NEXT JANUARY ASSUMING WE EXIST BY THEN, WE WILL COMPILE THOSE RESULTS AND SELECT NUMBER OF THEM, 20. TO SUBMIT TO CONGRESS. WITH NO FURTHER ADIEU WE'LL MOVE TO THE ACCORDANCE. NO QUESTION SUBMIT IN QUESTION ONE, I KNOW -- NO PAPERS SUBMITTED FOR QUESTION ONE, QUESTION TWO WHICH IS UNDERLYING BIOLOGY THERE WERE TWO OF THEM. ONE OF THEM WAS BY ME AND REGARDING THE ROLE OF SHANK 3 A KNOWN HIGH RISK HIGH IMPACT GENE PRE-DISPOSES TO AUTISM. AND IT'S -- ITS ROLE IN SLEEP. AND CIRCADIAN RHYTHM, I THINK THIS IS IMPORTANT THE BIOLOGICAL MECHANISMS OF SLEEP ARE DEFINITIVELY TRANSLATIONAL, THEY ARE OPERATED ACROSS MULTIPLE SPECIES. SLEEP ARCHITECTURE EFFECTS HAVE EFFECTS ON NEURAL FUNCTION AND DEVELOPMENT, THAT'S WHY I NOMINATED THAT ONE. WALTER AND ALLISON NOMINATED THE NEXT ARTICLE. GO BACK TO THE PREVIOUS SLIDE. DR. KOROSHETZ. YOU ARE DEFERRED TO T. PRETTY INTERESTING IN SENSE THEY TOOK IPS CELLS FROM FOLKS IPS ARE STEM CELLS DERIVED FROM FEMALE TISSUE LIKE SKIN OR BLOOD. THEY TOOK IT FROM PEOPLE WHO HAD THIS INCREASE GROWTH PATTERN YOU SEE IN THE BRAINS OVER THE FIRST COUPLE OF YEARS. IN SOME FOLKS WITH AUTISM. AND BUT THEY DEMONSTRATED IS THAT IN THEIR ORGANOID CULTURES THEY SAW BASICALLY OVEREXUBERANCE OF GROWTH OF PROCESSES IN CELLS IT WAS REPLICATED IN ORGANOID YOU PUT THE IPS CELLS IN DISH AND LET THEM GROW AND ORGANIZE THEMSELVES. BUT THE MORE INTERESTING PART IS THEY DID THE ANALYSIS THE TRANSCRIPTOME AT DIFFERENT STAGES IN THEIR CONTROL IPS CELLS AND IN THE IPS CELLS TAKEN FROM FOLKS WITH AUTISM. THEY DEMONSTRATE EARLY STAGES OF DIFFERENTIATION, CELLS FROM FOLKS WITH AUTISM ARE BASICALLY GETTING INTO TIME -- PATTERNS THAT SHOULD NOT BE OCCURRING EARLY POINT IN TIME. THIS OCCURS AT STAGE BEFORE BECOMING NEURONS SO NEURAL STEM CELL STAGE WHICH IF IN THOSE GENES THEY LOOK THEY SEE IN THESE EARLY STAGES THAT ARE ABNORMALLY EXPRESSED IN IN FOLKS WITH AUTISM, THEY SEE GENES THAT CAME FROM FROM GWAS STUDIES IN AUTISM SO THOSE GENES ENRICH FOR WHAT WE THINK ARE AUTISM GENES SO IF STORY HOLDS WATER, WHAT IS POINTING TO IS A DEFECT AT THE VERY EARLY STAGE OF DEVELOPMENT OF BRAIN, AND WHETHER IT -- WE'LL SEE THAT IN OTHER PATIENTS WITH AUTISM WITHOUT LARGER BRAIN IS YET TO BE SEEN. AND THE OTHER THING THEY DID IS USE ANOTHER PROCESS WHERE THEY MOVE CELLS STRAIGHT TO NEURONS AN SKIP EARLY STAGE, THERE'S NO DIFFERENCE BETWEEN AUTISM CELL AND CONTROLS. SO AGAIN THERE IS MATHEMATICS IN THIS ONE. YOU HAVE TO ALWAYS LOOK FOR SOMEBODY ELSE TO REPLICATE IT. IF WHAT THEY SAY IS TRUE, AMAZING. >> I WOULD SAY DIFFERENCES ALL DISAPPEAR BUT THEY WERE CLEARLY MUCH THE CELLS ALREADY NORMAL IF DURNIATED TO NEURONS AS OPPOSED TO GOING THROUGH THE PRECURSOR STAGES. BY I THOUGHT WAS THE MOST INTERESTING THING. THERE'S A PROGRAM THAT UNFOLDS THROUGH DEVELOPMENT RESPONSIBLE FOR CHANGES ASSOCIATED WITH AUTISM AS A OPPOSED TO SOMETHING THAT TAKES PLACE IN NEURONS BY THEMSELVES. QUESTION 3 THERE WERE A NUMBER OF SUBMISSIONS I'M THE ONLY ONE HERE SO I'M COMMENT ON THAT AND IF YOU WANT TO COMMENT OTHER ONCE. THIS IS THE STUDY REFERRED TO EARLIER IN THE DAY WHEN TALKING MANY DEFINITIVE EPIDEMIOLOGICAL STUDIES, THIS IS A NATIONWIDE COHORT STUDY SHOWING MMR VACCINE DOES NOT INCREASE RISK FOR AUTISM. DISEASE ANOTHER OF MANY NAILS IN COFFIN, WHETHER OR NOT IT WILL MAKE A DIFFERENCE IN CONVINCING SKEPTICS, THE FACT IS IT'S ANOTHER STRONG PIECE OF EVIDENCE REFUTING THE VACCINE HYPOTHESIS. ARE THERE COMMENTS ABOUT THE OTHER THREE? STILL CONSIDERED IN MENTION YEAR. OKAY. JERRY, ARE YOU ON THE PHONE? DO YOU WANT TO TALK ABOUT THAT? >> SURE. HERE IS WHAT -- I SEE OVER THE WEB OR SLIGHTLY BEHIND EVERYTHING SO I HAIR YOUR SPEECH BEFORE THE SLIDES SO YOU HAVE TO TELL ME EXACTLY WHAT'S SHOWING. >> THE SEPA PAPER WE'RE ASKING YOU TO COMMENT ON. >> THIS IS AN INTERESTING STUDY BECAUSE FAMILIES WHO HAVE NUMBER WITH ADHD SHOWN INCREASE RISK FOR AUTISM IN YOUNGER SIBBINGS AND VICE VERSA. AND IT JUST POINTS SHARED GENETIC OVERLAP BETWEEN TWO CONDITIONS. I THINK IT'S ALSO IMPORTANT JUST IN TERMS OF TALKING TO FAMILIES, POTENTIALLY ABOUT THIS FAMILY YOU CAN POINT TO THIS STUDY THAT THERE'S INDEED SHARED GENETIC RISK. NOT JUST GENETICS BUT ALSO ENVIRONMENTAL FACTORS THAT COULD BE SHARED WITH BOTH DISORDERS. >> THANKS, JERRY. DON'T GO AWAY. >> I'M STILL HERE. ALL DAY LONG. ENJOYED IT. >> ALSO YOU SUBMITTED QUESTION FOR TREATMENT INTERVENTIONS. >> I CAN TALK ABOUT THE OTHER ONE. WHICH DID YOU WANT TO TALK ABOUT? >> PRENATAL VITAMINS WHAT'S NEW BETWEEN PRENATAL VITAMINS AND AUTISM RISK ON SUSCEPTIBLE DRUG POPULATION. THE SUBPOPULATION IS MARBLE STUDY WHERE MOMS WITH EXISTING CHILD WITH AUTISM, ARE ENROLLED WHEN PLANNING TO BECOME PREGNANT OR IN THE EARLY STAGES OF PREGNANCY, AND THEY'RE FLUED DURING PREGNANCY AND BABIES TO AGE 3, NOT ONLY A VERY EFFICIENT STUDY DESIGN BUT REDUCES THE RISK OF RECALL BIAS, YOU ARE COLLECTING DATA REAL TIME FROM THESE MOMS. WELL BEFORE THE BABY IS BORN. BEFORE THERE'S ANY CLINICAL EVALUATION. OF THE BABY. IN THIS SETTING WHAT INVESTIGATORS FOUND THAT PRENATAL VITAMIN USE IN THE FIRST MONTH OF PREGNANCY HAD A BIG IMPACT REDUCING AUTISM RISK IN THE NEW BABY. THEY ALSO FOUND ASSOCIATION BETWEEN PRENATAL VITAMIN USE AND SEVERITY OF AUTISM SYMPTOMS AND COGNITIVE SCORES. THERE'S SEPARATE ANALYSES LOOKING AT AMOUNT OF FOLIC IN PRENATAL VITAMINS IS A BIG COMPONENT AND THOSE ANALYSIS BEST OF THAT. ACID MAYBE DRIVING THIS ASSOCIATION AND'S BIOLOGIC PLAUSIBILITY TO THIS. I LIKEDDED THIS STUDY BECAUSE MANY STUDIES NIEHS SUPPORT ARE LOOKING AT ENVIRONMENTAL CHEMICALS ARE HARMFUL AND INCREASE RISK AND THIS IS A GREAT EXAMPLE OF A MODIFIABLE RISK FACTOR AND EXPOSURE THAT CAN BE PROTECTIVE. FROM >> DID THEY LOOK AT -- B-12 COMPONENT? THAT'S ALSO BEEN ADVANCED AS A THEORY FOR -- >> THEY DON'T REPORT THOSE ANALYSES, THEY LOOKED AT IRON AS WELL. I BELIEVE THEY LOOKED AT THEM BUT THEY JUST DIDN'T INCLUDE THEM. IT'S A FAIRLY SMALL SAMPLE SIZE. SO MAY NOT HAVE HAD ENOUGH VARIATION IN OTHER COMPONENTS. >> I THINK, IF SO, I WOULD LIKE TO POINT IT OUT, THEY USED A DIMENSIONAL READ OUT ESSENTIALLY. THEY LOOK AT AUTISM SEVERITY SCORE AS OPPOSED TO CATEGORY GAL INDIVIDUAL GET DIAGNOSIS RIGHT? >> THEY DID BOTH. >> THAT'S IMPORTANT BECAUSE IT SUGGESTIONS YOU MIGHT HAVE EFFECTS ACROSS THE SPECTRUM AND NOT JUST THOSE WHO ARE NEAR BORDERLINE WHETHER YOU'RE GOING TO GET THE DIAGNOSIS WHICH IS A GOOD THING FOR EVERYONE. >> YES. >> THANK YOU. OKAY. NOW WE'LL GO BACK TO YOU, JERRY. YOU SUBMITTED FOR QUESTION FOUR ROGERS ET AL, MULTI-SITE RANDOMIZED PHASE 2 TRIAL, COMPARED TO TREATMENT AS USUAL, THIS IS IN THE TREATMENT INTERVENTION CATEGORY. >> RIGHT. SO THIS IS THE FIRST RANDOMIZED MULTI-SITE CLINICAL TRIAL OF AN INTENSIVE COMPREHENSIVE EARLY INTERVENTION, THIS IS THE EARLY START MODEL, IT STARTED WITH A œFOLLOWED BY TWO YEARS OF IT E ASSESSED BY A STANDARDIZED TEST. SO YOU HAVE TO ACTUALLY SHOW HIGHER RATES OF LANGUAGE ACQUISITION RELATIVE TO WHAT WE EXPECT FOR NORMAL DEVELOPMENT IN ORDER TO GET SIGNIFICANT INCREASE ON STANDARD SCORE. THIS IS ON THE MULLEN SCALE THROUGH EXPRESSSIVE LANGUAGE. SECONDARY OUTCOMES WERE IQ AND FULL SCALE IQ SCORE ON THE M ORBLLEN AND ADOS SYMPTOM. IT WAS FOUND THAT THE -- THERE WAS A TREATMENT BY TIME INTERACTION IN OTHER WORDS, FOR THE PRIMARY END POINT WHICH IS LANGUAGE, SO THERE WAS AN ADVANTAGE IN TERMS OF LANGUAGE DEVELOPMENT FOR CHILDREN WHO RECEIVED THE EARLY START MODEL. AS COMPARED TO INTERVENTION IN THE COMMUNITY. THE COMMUNITY CHILDREN BY THE WAY DID RECEIVE HIGH LEVELS OF INTERVENTION IN TERMS OF HOURS OF INTERVENTION, THERE WASN'T A HUGE DIFFERENCE SO SERVICE JUST A MODEL. LOOKING AT TWO OTHER OUTCOMES THAT WERE REPORTED IN THE ORIGINAL STUDY, THAT WAS PUBLISHED IN IN 2010, SINGLE SITE, THERE WAS SIGNIFICANT INCREASE IN IQ AND DECREASE IN AUTISM SYMPTOMS BUT IN BOTH GROUPS. THE COMMUNITY GROUP AND THE EARLY START MODEL GROUPS SHOW SIGNIFICANT IMPROVEMENT IN THEIR IQ AND REDUCTIONS IN SCORES AND THE AVERAGE IMPROVEMENT IQ WAS SIMILAR TO THE 2010 STUDY, IT WAS DONE WHERE THE WHO CONDUCTED ALL THE TESTS WERE BLIND TO WHETHER THE CHILD RECEIVED AN ESDM VERSUS COMMUNITY TREATMENT. ANALYSES CONDUCTED AT DATA COORDINATING CENTER. IS THIS DEFENDANT INVESTIGATORS? >> -- DIFFERENT INVESTIGATORS? >> I WAS THE PI ON THE ORIGINAL STUDY. AND SALLY THE SECOND IS WHAT IS THE SAMPLE SIZE IN THIS ONE? >> IT STARTED OUT WITH INTENT TO TREAT WITH 118 CHILDREN CHILDREN, 81 CHILDREN FULLY COMPLETED THE TWO YEARS BUT ANALYSIS DONE AS INTENT TO TREAT ANALYSIS THAT INCLUDED THE CHILDREN WHO WERE LOST. THE PRIMARY LOSS WAS THE TRANSITION FROM THE MOVING FROM THE PARENT TRAINING INTO THE INTENSIVE. SAME PAGE IN PARTICULAR OUR LISTENERS OUT THERE IN THE RADIO LAND, THE MODEL, WHAT IS THE PRINCIPLE MODE OF TREATMENT THAT IT USES? >> THE MODEL IS A COMPREHENSIVE MODEL THAT MEANS IT'S NOT TARGETED JUST ON ONE DOMAIN SUCH AS SOCIAL COMMUNICATION BUT TARGETS ALL DOMAINS OF EARLY BEHAVIORAL DEVELOPMENT DEVELOPMENT AND RELATION BASED PRINCIPLES. >> THANK YOU VERY MUCH. THE NEXT ONE IS ONE THAT, LESS A TRIAL BUT DESCRIPTION OF WHAT INDIVIDUALS ARE GETTING HALF CAREGIVERS OF INDIVIDUALS WITH CHILDREN WITH ASD REPORTED AT LEAST ONE BARRIER TO TREATMENT. SUCH AS WAITING LIST FOR TREATMENT OR LACK OF COVERAGE FOR TREATMENT, IT SIGNIFIES THE IMPORTANCE OF ADVOCATING FOR COVERAGE FOR INDIVIDUALS WITH AUTISM, STILL THOUGH THE EVIDENCE BASE FOR THOSE TREATMENTS HAS BEEN IMPROVING WITNESS PREVIOUS PAPER. STILL WORK TO BE DONE. QUESTION SIX THERE WERE THREE SUBMISSIONS FOR LIFE SPANISH SHOES AND THE FIRST ONE AGAIN WAS DONE BY NIMH AND IT WAS A 20 YEAR STUDY OF SUICIDE DEATH IN STATEWIDE AUTISM POPULATION AND I CAN'T SEE WHAT STATE IT WAS. COUNT TORE THE PHENOMENON IN GENERAL POPULATION FEMALES WITH ASD WERE THREE TIMES LIKELY TO DIE FROM SUICIDE SORRY TAKE THAT BACK. FEMALES THREE TIMES AS LIKELY TO DIE FROM SUICIDE WITHOUT ASD BUT I BELIEVE ALSO THERE WERE MORE LIKELY TO DIE THAN MALES WITH ASD. YOU DON'T THINK SO. SAME. WHEREAS IN THE GENERAL POPULATION THE RATE OF DEATH SUICIDE IN MALES IS TWO TO THREE TIMES THAT IN FEMALES DEPENDING THE AGE RANGE SO IN ASD WE SEE MORE DEATH FROM SUICIDE IN FEMALES COMPARED TO MALES RELATIVELY AND MORE SUICIDE OVERALL IN THIS ONE STATE. THAT SPEAKS TO THE IMPORTANT OF THIS AS WE HAVE BEEN TALKING PROBLEM. DAVID MANNDEL, YOU -- DID HE STEP OUT? HE HAD TO LEAVE UNFORTUNATELY BUT PRESENTED A PAPER ON VOCATIONAL REHABILITATION. AND JENNIFER JOHNSON SUBMITTED A PAIN IR, COMPETITIVE -- PAPER COMPETITIVE EMPLOYMENT FOR TRANSITION AGE YOUTH. FROM >> THE COMPETITIVE EMPLOYMENT FOR TRANSITION AGE YOUTH IS THE STUDY DR. WEYMAN PRESENTED THE OUTLINE OF. THE STUDY INCLUDED YOUNG ADULTS WITH ASD AGE 18 TO 21 ENROLLED IN PUBLIC SPECIAL EDUCATION. LONGER STUDENTS RECEIVED SPECIAL ED SERVICES IN THE OTHER GROUP SPENT LAST YEAR HIGH SCHOOL AS YOU SAID IN A SPECIALIZED INTERNSHIP PROGRAM, IT PROVIDED EMPLOYMENT EXPERIENCES, SPECIALIZED INSTRUCTIONS AND SUPPORTS FOR PEOPLE WITH ASD AS WELL AS OTHER ACTIVITIES TO SUPPORT EMPLOYMENT. IN FOUR HOSPITALS YOU HAVE SEEN RESULTS ON THE SCREEN. THAT SHOULD DO IT. >> THANK YOU. I JUST WANT TO POINT OUT THOUGH I DON'T WANT -- LET ME ASK THE QUESTION, WAS THIS RESEARCH OR THE INITIATIVE, IS IS THAT SOMETHING THAT GREW OUT OF RECOMMENDATIONS OF THIS COMMITTEE SOME YEARS AGO TO FOCUS ON YOUTH OR IS THIS EXISTENT? >> IT STARTED BEFORE. SECOND CYCLE LINE OF WORK. >> NOSE ARE THE NOMINATIONS. WE'LL KEEP THEM IN MIND AS WE GO TO VOTING ON THE ONES THAT WE WANTS TO PUT FORWARD NEXT YEAR AT LEAST THOSE OF US WHO ARE STILL ON THE COMMITTEE BY THEN. FINALLY, THE NEXT ORDER OF BUSINESS IS A ROUND ROBIN, WE HAVE 15 MINUTES LEFT IN THE MEETING. IF PEOPLE HAVE THINGS THEY WOULD LIKE TO SHARE WITH THE GROUP FROM THEIR INSTITUTIONAL ORGANIZATION. I WILL LOOK AROUND THE TABLE THEN GO TO PHONE. STEWART. >> FROM THE CDC I HAVE TWO THINGS TO INFORM THE GROUP ABOUT AND THE GROUP MAY ALREADY KNOW WHY ONE OR BOTH THE FIRST HAS TO DO WITH MORBIDITY AND MORTALITY. WE REPORTED THAT WAS PUBLISHED EARLIER THIS MONTH. FOLKS MAY KNOW THAT IN 2010 THAT CDC, BEGAN POPULATION BASED SURVEILLANCE FOR ASD AMONG FOUR-YEAR-OLD CHILDREN LIVING IN COMMUNITIES ACROSS THE UNITED STATES AND THESE COMMUNITIES ARE A SUBSET OF THOSE SITES PARTICIPATING IN THE REGULAR ATOM NETWORK WHICH IS SURVEILLANCE ON 8-YEAR-OLD CHILDREN. SO THIS SECOND SET IS EARLY ADAM AND PUBLISHING RESULT FROM EARLY ADAM. THERE'S SEVEN SITES FROM THE ADAM NETWORK WHO PARTICIPATED IN EARLY ADAM SURVEILLANCE FOR ONE YEAR DURING 2010 AND IS 12 AND 14 AND AMONG THEM THREE SITES HAD DATA FOR ALL THREE OF THOSE YEARS AND CONSISTENT DATA SOURCES AND CASHMAN AREAS. AND THE ESTIMATED PREVALENCE WAS HIGHER IN 2014 THAN IN 2010 FOR ONE OF THESE SITES FOR NEW JERSEY. BUT IT WAS STABLE FOR THE OTHER TWO SITES FOR ARIZONA AND MISSOURI. THE INTERESTING INFORMATION I THINK THE VERY RELEVANT INFORMATION IS LOOKING AT AGE OF DIAGNOSIS OF AUTISM IN FOUR-YEAR-OLD CHILDREN AND AGE FIRST DEVELOPMENTAL EVALUATION BECAUSE THE GOAL IS TO GET DEVELOPMENTAL EVALUATIONS AS EARLY AS POSSIBLE BEFORE 36 MONTHS AND DIAGNOSIS BY FOUR YEARS OF AGE WITH ASD. UNFORTUNATELY DATA SHOW NO CHANGE OVER TIME IN THE AGE, IT STILL REMAINED, THE PROPORTION WHO ARE DIAGNOSED AFTER FOUR YEARS OF AGE OR WHO HAVE THEIR FIRST DEVELOPMENTAL EVALUATION AFTER 36 MONTHS IS STILL REMAINS THE SAME. SO THE BOTTOM LINE IS THAT AUTISM CONTINUES TO AFFECT MANY CHILDREN AND FAMILIES AND SERVICES AND SUPPORT A CRITICAL NOW AND AS THE CHILDREN GROW TO ADOLESCENT AND ADULTHOOD AND THE SURVEILLANCE REINFORCES MORE NEEDS TO BE DONE TO ENSURE THAT THE SIGNS OF POTENTIAL DEVELOPMENTAL DELAY NEED TO BE RECOGNIZED EARLY AND THE CHILDREN EVALUATED EARLY THROUGH ONE'S DEVELOPMENTAL -- ONCE DEVELOPMENTALLY RECOGNIZED. THE SECOND ITEM TO MENTION, IN MARCH CDC AND ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITY WITH SUPPORT FROM HRSA MATERNAL CHILD HEALTH BUREAU ANNOUNCED A NEW COHORT OF ACT EARLY AMBASSADORS, THE ACT EARLY AMBASSADORS WORK WITH CDD LEARN THE SIGNS ACT EARLY PROGRAM TO IMPROVE EARLY IDENTIFICATION AND DEVELOPMENTAL DELAY OF DEVELOPMENTAL DELAYS AND DISABILITIES INCLUDING AUTISM AND THERE ARE NOW AMBASSADORS IN 47 STATES IN DC AND IN THREE TERRITORIES, AND WHAT THE AMBASSADORS DO IS SERVE AS A STATE OR REPRESENTATIVE OF CDC NATIONAL LISTEN THE SIGNS ACT EARLY PROGRAM AND PROMOTE THE ADOPTION AND INTEGRATION OF LEARN THE SIGNS ACT EARLY RESOURCES AN MATERIALS TO SUPPORT DEVELOPMENTAL MONITORING IN SYSTEMS THAT SERVE YOUNG CHILDREN AND FAMILIES SUCH A AS THE WEC PROGRAM AND EARLY CHILDHOOD SERVICES. >> THANK YOU, STEWART. >> NIEHS HAS UPCOMING EVENT NEXT WEDNESDAY AS PART OF PARTNERSHIPS FOR ENVIRONMENTAL HEALTH WE'LL HOST A WEBINAR THAT FEATURES TWO OF OUR AUTISM GRANTEES TALKING ABOUT THE STATE OF THE SCIENCE AND AS IMPORTANTLY THE CHALLENGES THAT SCIENTISTS FACE IN COMMUNICATING ENVIRONMENTAL RISK FACTORS FOR AUTISM. PENN STATE AND -- AT KEISER PERMANENTE ARE THE GUEST SPEAKERS, I PROVIDED A LINK WITH MORE INFORMATION ABOUT THAT AND YOU CAN FIND IT ON THE IACC WEBSITE. >> THANK YOU VERY MUCH. >> YEP. >> GOOD AFTERNOON. THIS IS MARSIA WITH INDIAN HEALTH SERVICE I WANTED TO THANK IACC, DR. DAN -- DR. WAGNER, FOR HELPING SUPPORT THE INTERAGENCY ROUND TABLE. DR. SHAPIRO AND WE HAD A VARIETY OF OUR FEDERAL AGENCIES, THAT ARE PART OF IACC WITH THAT. BEWILL BE MAKING THAT ANOTHER EVENT NEXT YEAR APRIL 2 SO MARK CALENDARS FOR APRIL 2, 2020. IT SHOULD BE IN THE AFTERNOON WEBINAR, I'M EXCITED TO SAY THAT AS WE STARTED LAST YEAR WITH THE INAUGURAL ONE THIS YEAR WE ACTUALLY HAD APPROXIMATELY 80 FOLKS ATTEND, WE HAVE HAD A LOT OF FOLKS PROVIDE FOLLOW-UP EMAILS, ASK FOR RESOURCES AND I WOULD LIKE TO EXTEND A SPECIAL THANK YOU TO AUTISM SPEAKS FOR PROVIDING AN EXCELLENT PRESENTATION AND DISCUSSION. SO PLACE LOOK FORWARD TO THAT AND PLEASE SHARE THE INVITES AS WIDELY AS POSSIBLE. SO THANK YOU. >> THANK YOU. ALLISON, I BELIEVE YOU HAD SOMETHING? >> SO THE AUTISM SCIENCE FOUNDATION HELD ITS SIX ANNUAL DAY OF LEARNING TWO AND A HALF WEEKS AGO. ALL OF THE VIDEOS FROM ALL THE PRESENTATIONS ARE NOW AVAILABLE ON OUR WEBSITE FOR FREE INCLUDING A PRESENTATION FROM IACC CHAIR DR. GORDON AS WELL AS PRESENTATIONS INCORPORATING WEARABLE TECHNOLOGIES RESEARCH, UNDERSTANDING THE AUTISM RECURRENCE RISK RATE AND OFFSPRING OF UNAFFETED SIBLINGS, THE ROLE OF THE MICROBIOME, REDUCING SUICIDALITY, COMMUNICATING RESEARCH TO THE PUBLIC AND REDUCING SELF-INJURY AND AGGRESSION IN PEOPLE WITH AUTISM. THOSE ARE ALL ON OUR WEBSITE. OUR NEXT DAY OF LEARNING IS IT WILL BE IN SAN FRANCISCO. AND THE KEYNOTE WILL BE DELIVERED BY FORMER IACC CHAIR, DR. TOM INSEL AND WILL ALSO FEATURE IACC MEMBER NOT THERE ANY MORE, DAVID MANNDEL. MANDEL. WE JUST ANNOUNCE SPRING PRE-AND POST-DOCTORAL FELLOWSHIPS, IF YOU WANT TO READ ABOUT TALENTED UP AND COMING YOUNG INVESTIGATOR, THEY CAN ALL BE FOUND ON WEBSITE AS WELL. >> THANK YOU, ON THE PHONE, ARE THERE ANY UPDATES FROM ANYONE ON THE PHONE? >> JUST WANT TO MENTION THE NSAR MEETING IN MONTREAL WHICH WILL BE MAY 1 THROUGH 4. IF YOU WANT TO UNDERSTAND SOME OF THE DETAIL IN TERMS OF THE PRESENTATIONS THAT WILL BE MADE YOU CAN GO TO THE NSAR WEBSITE AND THERE IS A SCHEDULE UP AND YOU CAN LOOK AT KEYNOTES, VERY EXCITING MEETING. THERE IS ALSO A AUTISM IMAGING WORKSHOP THAT WILL BE HELD IN MONTREAL RIGHT BEFORE NSAR AND IN PARTNERSHIP WITH NSAR SO THAT INFORMATION ABOUT THAT IS ALSO ON THE WEBSITE SO ENCOURAGE EVERYONE TO COME, WIDE OF TOPICS FROM BASIC RESEARCH TO TREATMENT AND DISSEMINATION WORK. >> THANK YOU. FOR THE VIEWER AT HOME, WHAT IS NSAR? >> I'M SORRY, ENTERNABNAL SOCIETY FOR AUTISM RESEARCH. THIS WILL BE IN MONTREAL, CANADA, THIS YEAR. AND THE DATA IS MAY 1 THROUGH 4. >> THANKS. I HAVE A COUPLE OF UPDATES, FIRST I WANT TO MAKE Y'ALL AWARE OF A PROGRAM I HAVE SPOKEN HERE BEFORE AS OTHERS ABOUT THE ADOLESCENT BRAIN COGNITIVE DEVELOPMENT PROGRAM, A LARGE RESEARCH EFFORT THAT SPANS INSTITUTES TO STUDY NEURAL DEVELOPMENT IN CHILDREN AGE 9 TO 19. WE ARE EXCITED IT'S GOING GANG BUSTERS THE DATA ARE ALREADY AVAILABLE FOR PUBLIC RESEARCHERS FROM AROUND THE WORLD TO ACCESS AND STUDY AND IN FACT THERE'S ALREADY A NUMBER OF PUBLICATIONS WITH SOME INTERESTING RESULTS. BUT RELEVANT TO THIS GROUP THE NIH IS BEGINNING TO PLAN, I SHOULD SAY WELL INTO THE PLANNING STAGES OF COMPLIMENTARY INITIATIVE THAT WOULD START AT OR AROUND BIRTH UP THROUGH AGE TEN DOING THE SAME THING STUDYING NEURAL DEVELOPMENT FROM A NEUROSCIENCE PERSPECTIVE, BEHAVIORAL PERSPECTIVE, AND LOOKING AT THE EFFECTS OF ADVERSE EXPERIENCE AND ALSO OF SUBSTANCES PARTICULARLY WITH AN INTEREST IN LOOKING AT THE EFFECTS OF PRENATAL OPIATE EXPOSURE. SO THAT I AM PLEASED TO SAY THE ANNOUNCEMENT WAS WELL RECEIVED BY THE COMMUNITY, RECEIVED A VERY LARGE NUMBER OF APPLICATIONS FOR THE FIRST ROUND OF PLANNING GRANTS SO WE ARE HOPEFUL THAT THIS WILL GET OFF TO FLYING START WITHIN THE NEXT FEW MONTHS. AND THAT YOU'LL BEGIN TO SEE THE STRUCTURE OF IT AND WILL BEGIN TO HEAR WHAT IT WILL LOOK LIKE OVER THE NEXT YEAR OR TWO AS PLANNING GRANTS GET EXECUTED. THE NEXT THING WE WANT THE SAY AS WE HAVE BEEN TALKING ABOUT SVERAL TIMES THROUGH THE DAY, THE IACC IS AUTHORIZED BY AN ACT, THE CURES ACT CARES ACT. AUTISM CARES ACT. AND AS YOU KNOW, AS YOU HAVE HEARD THIS ACT EXPIRES SEPTEMBER 30 THIS YEAR, WE KNOW HOWEVER CONGRESS IS HARD AT WORK ON THE NEXT REVISION OF IT, THERE IS LANGUAGE THAT IS PUBLICLY AVAILABLE SOMEWHERE, SO YOU SHOULD BE ABLE TO FIND THE LANGUAGE AND LOOK AT IT AND SEE WHAT THEY'RE WORKING ON. THERE ARE SOME DIFFERENCESSABLE BUT COMPARED TO WHAT EXISTED BEFORE BUT THEY ARE PROPOSING TO REINSTATE THE IACC. WHEN THE IACC GETS REINSTATED THOUGH, WE HAVE TO REENROLL MEMBERS SO PAY ATTENTION TO WHEN THAT PASSES AND CALLS FOR NOMINATIONS FROM MEMBERS OF THE PUBLIC THE SECRETARY OF HEALTH AND HUMAN SERVICES DETERMINES THE MEMBERSHIP SO WE WILL NEED TO BE RECONSTITUTING THE COMMITTEE SOON AS THAT LAW IS PASSED AND WE GET AUTHORIZATION FROM THE SECRETARY AND NOMINATIONS AND MEMBERS APPROVE, WE WILL BE HAVING ANOTHER MEETING SO WE'LL TRY TO GET IT GOING AS RAPIDLY AS POSSIBLE. HOPEFULLY WITHOUT MISSING ONE BUT IT DOES TAKE TIME TO GET PEOPLE ON BOARD. WITH THAT, I'LL TURN IT TO SUZANNE FOR THE CONCLUSION. >> I HAVE A FEW LITTLE ANNOUNCEMENTS. SO WITH REGARD TO THE LEGISLATION AT THE JULY MEETING, I WILL GIVE YOU AN UPDATE ON LEGISLATION AT THAT TIME, THAT WILL BE THE LAST PLANNED FULL COMMITTEE MEETING FOR THIS ITERATION OF IACC UNLESS WE HAVE OTHER BUSINESS WE NEED TO CONDUCT AND WE CAN ALWAYS CALL EXTRA MEETING IF WE NEED TO OR DO SOMETHING ON THE PHONE BUT THE PLAN IS TO HAVE OUR LAST MEETING ON JULY 24th HERE IN ROCKVILLE AND BE HERE IN THIS BUILDING THE SAME LOCATION. SOME OTHER UPCOMING ITEMS THAT I MENTIONED TO YOU EARLIER, THERE'S MENTAL HEALTH WORKSHOP SPONSORED BY THE IACC, MAY 21st, EVERYONE IS WELCOME TO COME OR WATCH THE WEBCAST, THE HOUSING WORKING GROUP WILL HOLD AN EVENT IN JUNE 2019 SO STAY TUNED FOR THAT AS WELL. I WANT TO GIVE JUST A VERY BRIEF PLUG FOR NIMH HAVING COUPLE MORE AUTISM AWARENESS MONTH EVENTS OR ITEMS COMING UP BUT THEY ARE NOT ANNOUNCED YET, THE PODCAST THAT WILL BE COMING UP AND THEN DR. GORDON WILL BE ALSO SENDING OUT A MESSAGE. >> THERE WILL BE A DIRECTORS MESSAGE THE FINAL STAGES OF BEING EQUIP DATED HOPEFULLY BY IT IS ON -- ACTUALLY IT'S ON THE TOPIC OF WHERE WE HAVE COME THE LAST 20 YEARS AND WHERE WE MIGHT LOOK FORWARD IN THE NEXT 20 YEARS IN AUTISM FINDINGS. I HAVE TO GIVE A SHOUT OUT TO BUT PARTICULARLY ANN WAGNER ANDH- LISA GILOTTI, THEY PROVIDED THE OUTLINE AND MANY IDEAS THAT ARE EXPRESSED THEREIN. >> THOSE ITEMS WILL BE ON THE IACC WEBSITE AUTISM AWARENESS PAGE AS WELL. WE ALSO I THINK THOSE ARE ALL OF MY ANNOUNCEMENTS. JUST TO REMIND YOU OF COURSE NEXT TUESDAY IS OUR ANNUAL AUTISM AWARENESS MONTH EVENT, WOMAN'S VOICE UNDERSTANDING THE AUTISTIC EXPERIENCE SO THAT WILL BE HERE AT NIH MAIN CAMPUS PORTER BUILDING. YOU ARE WELCOME TO WATCH ON THE WEBSITE OR ATTEND IN PERSON, SENDING OUT MORE REMINDER ABOUT THAT ONE. THAT'S MY LAST ANNOUNCEMENT. THANK YOU SO MUCH FOR A PRODUCTIVE AND STIMULATING MEETING AND THANK YOU TO OUR SPECIAL GUESTS WHO HAVE BEEN HERE WITH US TODAY. IT'S BEEN VERY NICE TO HAVE YOU HERE TO HELP RECOGNIZE AUTISM AWARENESS MONTH, ALL THE CONTRIBUTIONS OF EVERYONE. IN THE COMMUNITY AND AROUND THE TABLE. WHO ARE WORKING TO MAKE EVERYONE'S LIVES BETTER IN THE AUTISM COMMUNITY. THANK YOU.