WELCOME TO IACC, TODAY JULY 9, 2013. WE'RE LOOKING FORWARD TO A GREAT MEETING. WE HAVE A PACKED AGENDA AS USUAL. TODAY DR. INSEL IS GOING TO BE JOINING US LATE BECAUSE HE HAD A NEW GRAND BABY LAST NIGHT AND HAS SOME GRANDFATHERLY DUTIES TO DO THIS MORNING AND WILL BE HERE AS SOON AS POSSIBLE. BUT IN THE MEANTIME ALAN GUTTMACHER FROM NICHD WILL SIT IN FOR HIM AS CHAIR. SO WE ARE REALLY LOOKING FORWARD TO A NUMBER OF PANELS AND PRESENTATIONS TODAY THAT WILL REALLY HELP TO INFORM OUR COMMITTEE AND THE LISTENING PUBLIC. WE WANT TO WELCOME THOSE LISTENING ONLINE AND TO OUR WEBCAST AND TO THE PHONE LINE. DR. GUTTMACHER, DO YOU HAVE ANY COMMENTS THAT YOU WOULD LIKE TO MAKE? >> I WAS DELIGHTED BY TOM SENSIBLY ASKED LATE LAST NIGHT TO SIT IN CHAIRING FOR HIM. DELIGHTD TO DO IT ANYWAY BUT OF COURSE AS DIRECTERTOR OF THE EUNICE KENNEDY SHRIVER NATIONAL CHILD HEALTH AND HUMAN DEVELOPMENT, WE GOT OFF TO A GOOD START AND HAPPY GRANDFATHER EYE ATTENTION AS PART OF THAT. HAPPY TOM WILL TAKE OVER THE REIGNS LATER WHEN HE'S HERE. I THINK RATHER THAN GOING AROUND REINTRODUCING OURSELVES BECAUSE FACES ARE FAIRLY MUCH THE SAME, THERE HAVE BEEN A COUPLE OF CHANGES WE THOUGHT WE MIGHT MENTION IN TERMS OF MAKE UP THE COMMITTEE, ONE IS DENNIS CHOW HAS STEPPED DOWN FROM THE COMMITTEE AND THE SECOND WE'RE GLAD TO SEE THAT JERRY DAWSON IS STILL AROUND THE TABLE BUT SHE'S WEARING A DIFFERENT HAT THAN SHE HASN'T PAST SO WE THOUGHT WE MIGHT HAVE JERRY TELL US ABOUT THAT. >> THANK YOU, ALAN. AS YOU KNOW I HAVE HAD A WONDERFUL FIVE AND A HALF YEARS AT AUTISM SPEAKS. BUT I'M EAGER TO RETURN TO MY ROOTS AS A SCIENTIST AND ALSO AS A CLINICIAN WORKING DIRECTLY WITH FAMILIES. I'M GOING TO BE JOINING THE FACULTY DEPARTMENT OF PSYCHIATRY, PEDIATRICS PSYCHOLOGY AT DUKE UNIVERSITY ESTABLISHING A NEW SENTER FOR AUTISM DIAGNOSIS AN TREATMENT AND CO-DIRECTING THE DEVELOPMENTAL NEUROSCIENCE RESEARCH PROGRAM THERE. >> THANKS, WE CONGRATULATE YOU ON THAT, LOCK FORWARD TO CONTINUING TO DO GREAT THINGS FOR THE AUTISM WORLD IN YOUR NEW ROLE. OUR FIRST SPEAKER TODAY JAMES PERRIN, YOU HAVE FULL BIOGRAPHIES FOR THE SPEAKERS IN FRONT OF YOU. BUT JUST TO BRIEFLY INTRODUCE DR. PERRIN, IT'S EASY TO SAY HE'S DONE EVERYTHING IN PEDIATRICS IN HIS CAREER BUT THAT WOULD BE A LIE HE'S NOT BEEN PRESIDENT OF AMERICAN ACADEMY OF PEDIATRICS BUT HE'S PRESIDENT ELECT SO AS OF OF JANUARY 1st WE CAN SAY HE'S DONE EVERYTHING IN TERMS OF LEADERSHIP IN AMERICAN PEDIATRICS IN GENERAL BUT SPECIFICALLY HE'S LONG BEEN INTERESTED IN ISSUES IN AUTISM AND BOTH IN TERMS IN RESEARCH AND CLINICAL CARE HAS HAD A ROLE IN THAT THROUGH HIS LIFE IN MASS GENERAL, MASS GENERAL HOSPITAL, AND READ THE FULL BIOGRAPHY BUT HE'S AN EXPERT TO SPEAK TO US ABOUT -- WE HAVEN'T DOUBLE BILLED BUT FIRST OF HIS TWO TASKS TO TALK TO US ABOUT RACIAL ETHNIC DIFFERENCES AND SUBSPECIALTY SERVICES FOR CHILDREN WITH AUTISM. JIM. >> ALAN, CAN I STEP BACK A SECOND TO DO ROLECAL? >> ABSOLUTELY. WE HAVE TO APPROVE THE MINUTES TOO. >> WE HAVE NEED TO APRO-THE MINUTES. WE HAVE A COUPLE OF HOUSEKEEPING ITEMS BUT LOOK FORWARD THE HEARING FROM DR. PERRIN SO WE'LL GET TO THAT AS SOON AS POSSIBLE. I WOULD LIKE TO GO THROUGH ROLL CALL. DR. TOM INSEL IS NOT HERE BUT WILL JOIN US. JIM BATTY. >> PRESENT. >> LINDA BIRNBAUM. >> ON THE LINE. >> THANK YOU. COLLEEN BOYLE. >> I'M HERE. >> JOCIE BRIGGS. >> I'M HERE. >> DENISE DAUGHERTY. >> PRESENT. >> TIFFANY FOCIONI. >> ALAN GUTTMACHER IS HERE. LAURA CAVANAUGH. Q. PRESENT ON THE PHONE. >> DONNA KIMBARK. >> HERE. >> WALTER KORSHETS, MAYBE ON HIS WAY. SHARON LUIS. >> -- LOUIS. >> HERE. >> LINDA SMITH. I BELIEVE SHE MIGHT NOT BE ABLE TO MAKE IT TODAY. JOHN O'BRIEN. >> PRESENT. >> MICHAEL -- LARRY WEXLER. >> HERE. >> IDOL ABDUL. >> HERE. >> JIM BALL. >> HERE ON THE PHONE. >> AMSHU BATRA. >> HERE. >> NOAH BRITAIN IS NOT JOINING US TODAY. >> SALLY BERTANHOIL. >> HERE. Q. MATTHEW PERRY. ON THE PHONE I KNOW HE'S PLANNING TO JOIN ON THE PHONE BUT P MAY NOT BE HERE YET. JOSE CORDERO IS NOT ABLE TO JOIN TODAY DUE TO A MEDICAL ISSUE. JIM CRANDY. >> PRESENT. >> JERRY DAWSON. DAVID MANDEL. MAYBE ON HIS WAY. LYNN REDWOOD. SCOTT ROBERTSON. >> PRESENT. >> JOHN -- >> I'M HERE, I JUST WANT P TO SAY I INJURED MY HIP SO I WON'T BE ABLE TO SIT ALL DAY SO IF YOU SEE ME STAND UP AND WALK AROUND IT'S NOT BECAUSE I'M RUDE, IT'S BECAUSE MY HIP HURTS. >> THANKS FOR LETTING US KNOW. FEEL FREE TO WALK AROUND. WE DON'T HAVE ANY RULES AGAINST THAT. ALISON SINGER. >> HERE. >> SO WE HAVE A QUORUM FOR THE MEETING. I WOULD LIKE TO TURN YOUR ATTENTION TO THE MINUTES THE DRAFT MINUTES I SENT TO THE COMMITTEE FROM THE LAST MEETING ON APRIL 9TH. I DID HAVE A COUPLE OF COMMENTS BY EMAIL. DOES ANYONE ELSE HAVE COMMENTS THEY WANT TO HAVE US ADD OR DELETE OR CHANGE ANYTHING IN THE DRAFT MINUTES? SEEING NO COMMENTS ON THE MINUTES. DO WE HAVE A MOTION ON THE FLOOR TO ACCEPT THE MINUTES? >> SO MOVED. >> SECOND. ALL IN FAVOR. >> AYE. >> ANY OPPOSED? ANY ABSTAINING? THE MOTION CARRIES TO ACCEPT THE MINUTES WITH THE CHANGES THAT WERE SENT TO ME ONLINE AND THEY WILL BE POSTED ON THE INTERNET VERY SOON ON THE IACC WEBSITE. I WOULD ALSO LIKE TO BRING TO YOUR ATTENTION THAT WE POSTED ALL THE MEETING MATERIALS FOR THE THIS MEETING ON THE WEBSITE. SO IF YOU GO TO THE IACC WEBSITE AND GO TO MEETINGS AND EVENTS THE FIRST ITEM THERE YOU'LL SEE A LINK TO MATERIALS AND THERE'S AN EXCESSIVE LIST OF MATERIALS. WE DIDN'T EXPECT EVERY TO READ IT ALL BUT WE WANTED THAT INFORMATION TO BE AVAILABLE TO OUR COMMITTEE MEMBERS AND TO THE PUBLIC. WE PUT TOGETHER QUITE A LIST OF PUBLICATIONS ONCO MORBIDITIES WITH WITH AUTISM WE THOUGHT MIGHT BE HELPFUL AS WELL AS GUIDELINES. THIS TIMEq/ AROUND WE ALSO PUT TOGETHER THE LIST OF ALL THE PUBLICATIONS THAT WENT WITH THE SCIENCE UPDATE THAT WE'LL HAVE THIS AFTERNOON FROM DR. INSEL BECAUSE I KNOW THAT THE PUBLIC AND THE COMMITTEE ARE VERY INTERESTED IN THAT SCIENCE UPDATE EACH TIME SO WE THOUGHT THAT WOULD BE AN ADDITIONAL HELP TO HAVE A READY LINK TO MANY OF THOSE PUBLICATIONS. PLEASE FEEL FREE TO ACCESS ALL THAT INFORMATION AND IF YOU HAVE A LAPTOP OR iPAD OR OTHER TABLET HERE YOU MIGHT BE ABLE TO ACCESS IT HERE IN THE ROOM. SO ARE THERE ANY HOUSEKEEPING QUESTIONS BEFORE WE MOVE INTO THE AGENDA? >> SUSAN, THIS IS LINDA, SHOULD I BE ABLE TO SEE Y'ALL NOW ON VIDEOCAST? >> TO SEE WHAT, THE MATERIAL? >> YEAH. >> THE MATERIALS ARE ON THE WEBSITE SO IF YOU'RE WATCHING THE VIDEOCAST, IF YOU HAVE A SECOND SCREEN OR AN iPAD OR SOMETHING YOU CAN GO TO THE IACC WEBSITE AND ACCESS THE MATERIALS. OPT WEBCAST YOU CAN SEE WHAT'S ON THE SCREEN WHICH WILL BE THE SLIDES. AND VIDEO OF OUR FACES SMILING AS WE TALK ABOUT ALL THE EXCITING PROGRESS. >> I'LL GET THAT UP. THANKS. >> ANYWAY,LY TURN THINGS BACK TO THE CHAIR. >> JUST TO PROVE I TRIED TO SKIP MINUTES IN THE ROLL CALL I WOULD REMIND FOLKS TO USE MICROPHONES SO THOSE ON THE PHONE CAN HEAR US BUT AT THE SAME TIME REMEMBER TURN YOUR MICROPHONE OFF BECAUSE THE ROOM IS LIMITED HOW MANY MICS AT ONCE SO KEEP THAT IN MIND SO PEOPLE ON THE PHONE CAN PARTICIPATE. >> YOU HAVE TO PUSH THE BUTTON TO ACTIVATE THE LIGHT. YOU'LL SEE THE RED LIGHT COME ON AND REMEMBER TO TURN IT OFF. DR. PERRIN, THE FLOOR IS YOURS. >> THANK YOU, DR. GUTTMACHER. THANK YOU VERY MUCH TO THE MEMBERS OF THE IACC, IT'S A REAL PRIVILEGE AND HONOR TO BE HERE AND PRESENT A VARIETY OF PIECES OF WORK. THE AGENDA CHANGED A IF TIMES UNDER SUSAN'S DIRECTION. WE HAD A PAPER IN PEDIATRICS THAT SUSAN ASKED WE START OUT DISCUSSING WHICH IS A PAPER LOOKING AT RACIAL AND ETHNIC DIFFERENCES AND USE OF SUBSPECIALTY CARE BY CHILDREN WITH AUTISM. MY COLLEAGUE IS SARA BETH FINGER WHO IS A FELLOW IN THE PEDIATRIC HEALTH SERVICES RESEARCH, DOING WORK IN THIS AREA. SO BACKGROUND FOR THIS ISSUE IS THAT A NUMBER OF PEOPLE HAVE SHOWN THERE ARE SUBSTANTIAL RACIAL AND ETHNIC DIFFERENCES IN DIFFERENT ASPECTS OF CARE. DAVID MANDEL AND COLLEAGUES SHOWN AFRICAN AMERICAN CHILDREN RECEIVE DIAGNOSIS OF AUTISM LATER THAN WHITE CHILDREN AND ALONG WITH THAT LATER ACCESS TO EARLY INTERVENTION AND OTHER SERVICES. SOME OF THE REPORTS COMING OUT OF CDC AND FEDERAL MA TERM CHILD HEALTH BUREAU BY MICHAEL COLBIN AND OTHERS SHOWN THAT AFRICAN AMERICAN CHILDREN OR THEIR PARENTS REPORT MORE DELAYED OR FOREGONE CARE, LESS LIKELY O HAVE USUAL SOURCE OF CARE, THEY HAVE DIFFICULTIES GETTING NEEDED CARE AND I FOUND OF PARTICULAR INTEREST IN THE I BELIEVE 2007 DATA, AMONG THE ROUGHLY LARGE NUMBER OF CHILDREN WHO REPORTED LOSING THEIR DIAGNOSIS OF AUTISM, THAT'S NOT QUITE A FAIR STATEMENT, THIS IS REALLY CHILDREN WHOSE PARENTS SAID AT ONE POINT THEY HAD A DIAGNOSIS MADE OF AUTISM BUT THEY NO LONGER HAVE IT AT THE PRESENT TIME. THAT'S THE CATEGORY WE'RE TALKING ABOUT. THERE WAS A VERY HIGH OVERREPRESENTATION THAT AFRICAN AMERICAN CHILDREN IN THAT POPULATION OF CHILDREN WHO LOST THEIR DIAGNOSIS. WE CAN'T TELL FROM THE DATABASE WHY. WHAT IS THE RATIONALE FOR THIS CHANGE. IT'S AN INTEREST THAT THESE WERE YOUNG CHILDREN AS WELL AS OLDER CHILDREN, WE THOUGHT IT MIGHT BE OLDER CHILDREN CLASSIFIED DIFFERENT WAY BUT IN FACT IT DOESN'T SEEM TO BE WHAT'S GOING ON HERE EITHER. THIS IS AN INTERESTING FINDING FROM THE WORK DONE HERE, I THINK IT REQUIRES SOME MORE EXPLORATION. THERE ARE HIGHER RATES WE BELIEVE CO-MORBID CONDITIONS AMONG CHILDREN AND YOUTH WITH AUTISM. OUR SPECIFIC STUDY THAT WAS REPORTED IN PEDIATRICS RECENTLY CAME FROM LARGE PARTNER HEALTHCARE PROGRAMS, PARTNERS HEALTHCARE IS A LARGE INTEGRATE HEALTH DELIVERY SYSTEM IN EASTERN MASSACHUSETTS THAT INCLUDES MASSACHUSETTS GENERAL HOSPITAL, BRIGHAM AND WOMEN'S HOSPITAL, A NUMBER OF OTHERS AS WELL AS SERIES OF COMMUNITY PROVIDERS OF ONE SORT OF ANOTHER. SO IT'S A LARGE INTEGRATED DELIVERY SYSTEM WITH WITH A RESEARCH PATIENT DATA REGISTRY WHICH WE EXPLORE TOGETHER TO UNDERSTAND MORE ABOUT THE USE OF SPECIALTY CARE WITHIN THIS POPULATION. SO I NEED TO BE CLEAR SAYING I HAVE NO IDEA WHETHER PARTNERS IS GENERALIZABLE TO THE REST OF THE COUNTRY. NONETHELESS, WHAT WE LOOKED AT WERE CHILDREN AND YOUTH WHO5 THE DIAGNOSIS OF AUTISM SPECTRUM DISORDER IN OUR DATABASE. AND THIS IS MORE THAN JUST CLAIMS DATA, I DON'T WANT TO GET TOO FAR INTO THE DIFFERENCES BETWEEN CLAIMS DATA AND CLINICAL DATA BUT THIS IS FAIRLY RICH DATABASE WHICH GIVES A LOT OF INFORMATION ABOUT THE DIAGNOSES CHILDREN HAVE AS WELL AS THE ABILITY TO GO BACK TO MEDICAL RECORDS TO CONFIRM THOSE DIAGNOSES AND LOOK AT OTHER SERVICES THAT CHILDREN RECEIVEDDED. WE LOOK TO CHILDREN AGES 2 TO 21 YEARS, VISITS FROM THE YEARS 2000, 20 # 1 AND RATES OF VISITS WITH THREE MAJOR GROUPS OF PROVIDERS. GASTROENTEROLOGY AND NUTRITION, NEUROLOGY AND PSYCHIATRY, PSYCHOLOGY. WE ALSO LOOK ALONG WITH VISITS AT LABORATORY AND OTHER PROCEDURES DONE INCLUDING SOME GASTROINTESTINAL PROCEDURES AND PRIMARILY EEG AND NEUROIMAGING, SLEEP STUDIES AN NEUROPSYCHIATRIC TESTING. LET ME TELL YOU WHAT WE FOUND. WE HAD 3600 CHILDREN AND YOUTH IN THE STUDY, SO A SIZABLE POPULATION. IT IS PREDOMINANTLY WHITE, WE HAD 88 AFRICAN AMERICAN CHILDREN AND 240 LATINO CHILDREN, PREDOMINANTLY A MALE POPULATION. THIS IS ONE OF OUR EXAMPLES NOW OF THE FINDINGS WITH RESPECT TO THE VISIT RATES BY CHILDREN WITH AUTISM TO THESE THREE GROUPS. WE CONSIDER THE WHITE CHILDREN IN OUR REFERENCE GROUPS COMPARING IN THE THIRD COLUMN AFRICAN AMERICAN CHILDREN WITH WHITE CHILDREN. THESE NUMBERS ARE TO EXPLAIN THEM. .32, IF YOU HAD A NUMBER OF ONE THERE, THERE WOULD BE EQUIVALENT RATES OF VISITS TO GI NUTRITION. 32 MEANS AFRICAN AMERICAN CHILDREN WERE ONE-THIRD LIKELY TO HAVE GI NUTRITION VISIT AS WERE WHITE CHILDREN. LATINO CHILDREN APPROXIMATELY THE SAME, .32. IF YOU LOOK AT NEUROLOGY, THE STORY IS SOMEWHAT THE SAME, HALF AS LIKELY FOR AFRICAN AMERICAN CHILDREN TO HAVE SEE A NEUROLOGIST AT ANY POINT. IN THEIR EXPERIENCE WITH WITH OUR SYSTEM OF CARE. AND FOR LATINO CHILDREN ABOUT .40. THEN AGAIN SIMILARLY FOR PSYCHIATRY AND PSYCHOLOGY, IE CONSISTENTLY ACROSS THESE THREE MAJOR GROUPS OF SUBSPECIALISTS BEYOND AUTISM CARE PROVIDERS, SUBSTANTIALLY LOWER RATE OF USE OF THESE SPECIALISTS BY AFRICAN AMERICAN LATINO AND TO A DEGREE OTHER NON-WHITE CHILDREN. BACKWARDS. THIS IS NOW LOOKING AT SELECTED PROCEDURES, RATHER THAN VISITS. AND THE STORY IS SOMEWHAT THE SAME HERE, ACTUALLY HAVE A POINTER, IS THAT RIGHT? IT'S NOT THAT IMPORTANT, I CAN GO THROUGH THESE IF YOU'LL FORGIVE ME I'LL TROY TO EXPLAIN THEM. SO LET'S LOOK AT COLUMN 3 WHICH IS THE AFRICAN AMERICAN CHILDREN, THESE -- IF YOU LOOK THEN THE FIRST GROUP GI NUTRITION STUDIES STOOL STUDIES COLONOSCOPY IS ONE TYPE OF INVESTIGATION DONE BY GASTROENTEROLOGISTS AND ENDOSCOPY ANOTHER STUDY DONE. BASICALLY WHAT YOU SEE HERE IS FOR THESE CHILDREN RATES OF STUDIES WERE BETWEEN HALF TO THE A THIRD TO ALMOST A FIFTH OF THE RATES OF WHITE CHILDREN. SO THAT IS WHAT YOU SEE HERE, FOR LATINO CHILDREN WITH EXCEPTION OF STOOL STUDIES, ENDOSCOPY, THE ACTUAL PROCEDURES WERE DOWN A QUARTER OF THE RATE OF WHITE KIDS. NEUROLOGY, EEGs, I PUT THIS IN PARENTHESES BECAUSE THIS IS NOT STATISTICALLY SIGNIFICANTLY DIFFERENT HERE. BECAUSE THE RATES OF EEG AND TOTAL POPULATION WERE ACTUALLY RELATIVELY LOW. SOMEWHAT TO OUR SURPRISE. BUT NONETHELESS YOU CAN SEE HERE AGAIN THERE ARE LOWER RATES OF THESE PARTICULAR STUDIES FOR AFRICAN AMERICAN AND LATINO CHILDREN. AND THEN IF YOU LOOK FINALLY AT PSYCHIATRIC TESTING NEUROPSYCHOTESTING AND DEVELOPMENTAL TESTING YOU CAN SEE DIFFERENCES HERE. OF INTEREST LATINO CHILDREN WERE MORE LIKELY TO HAVE DEVELOPMENTAL TESTING THAN WERE WHITE CHILDREN THAT'S AN AREA THERE'S SOMEWHAT OF A CHANGE FROM WHAT WE HAVE HAPPEN IN THE EARLIER STUDIES HERE. THESE ARE MOST OF OUR RESULTS. SO IN SUMMARY FOR THE RESULTS HERE, WE CERTAINLY SEE A MAJOR DIFFERENCE BY RACE AN ETHNICITY IN SUBSPECIALTY SERVICE USE, I WANT TO GO BACK FOR THOSE INTERESTED IN SCIENTIFIC ASPECTS OF THIS TO SAY WE CONTROLLED IN ALL OF THESE ANALYSES FOR AGE, GENDER, FOR INSURANCE TYPE, OUR BEST EVIDENCE OF SOCIAL CLASS THAT WE HAD. WE HAVE OTHER INCOME INFORMATION ON THESE FAMILIES ALL THESE CONTROLLED FOR THESE VARIABLES HERE AS WELL. WE FIND MAJOR DIFFERENCES BY RACE AN ETHNICITY IN SUBSPECIALTY SERVICE USE IN OUR POPULATIONS. WHAT ARE POTENTIAL EXPLANATIONS? THERE MAYBE SUBSTANTIAL DIFFERENCES IN PRESENTATION OR SEVERITY. CHILDREN AFRICAN AMERICAN MAY REPRESENT SUBSTANTIALLY LATER, MAY PRESENT WITH MORE SEVERE EVIDENCE OF AUTISM OR MAY PRESENT WITH LESS SEVERE EVIDENCE OF AUTISM. WE DON'T HAVE GOOD INFORMATION TO ANSWER THAT QUESTION. THOSE DIFFERENCES IN PRESENTATION MIGHT EXPLAIN THE LIKELIHOOD BY WHICH PEOPLE ARE LOOKING FOR CO-MORBID CONDITIONS IN THAT POPULATION. THERE MAYBE DIFFERENCES IN PHYSICIAN OR PARENT REFERRALS, A NUMBER OF REFERRALS TO SUBSPECIALISTS OCCURRED THROUGH PARTS RATHER THAN THROUGH AUTISM SPECIALISTS OR PRIMARY CARE PHYSICIANS. THERE MAYBE DIFFERENCES THAT PARTS MAY THEMSELVES REFER DIFFERENT RATES IN DIFFERENCE RACE ETHNICITY POPULATIONS. THERE MAYBE DIFFERENCES IN FOLLOW-UP REFERRALS. WE HAVE DONE STUDIES WITH POPULATION LOOKING AT LIKELIHOOD OF SUCCEEDING IN GETTING REFERRAL DONE AND REFERRAL THAT'S MADE AND FOUND MAJOR DIFFERENCES THERE, BARRIERS REALLY TO GETTING YOURSELF TO REFERRAL PHYSICIAN OR HEALTH PROGRAM. SO THERE'S POTENTIAL EXPLANATIONS THAT WE HAVE HERE, WE DON'T HAVE GOOD INFORMATION FOR REAL ANSWERS. SO THAT'S THE FIRST PRESENTATION. >> T THERE'S PAUSE BEFORE SECOND PRESENTATION AND QUESTIONS, THOUGHTS FOLKS HAVE ABOUT THIS ONE. TIM. >> DID YOU HAVE CONTROL DATA OF PATIENTS WITHOUT AUTISM TO SEE IF THERE WERE DIFFERENCES IN REFERRAL THERE? IS THERE A WAY TO COMPARE OUTSIDE THE AUTISM POPULATION? >> WE DO NOT LOOK AT THAT, IT COULD BE DONE WITH THE DATABASE. SO I WOULD ASSUME WE WOULD FIND SIMILAR RESULTS IF WE WERE TO LOOK AT THE USE OF FOR EXAMPLE ENDOSCOPY BY RACE WITHIN OUR TOTAL POPULATION, I EXPECT DIFFERENCES. I THINK IT MIGHT BE INTERESTING TO LOOK AT INFLAMMATORY BOWEL DISEASE POPULATION AND SEE IF THAT POPULATION THERE ARE REAL DIFFERENCES IN RATES OF ENDOASK P BY. MY GUESS IS ALL KIDS WITH IBD DO GET ENDOSCOPY AT SOME POINT BUT I WONDER IF THEY'RE BY RACE ETHNICITY IN THE SENSE OF USE OF SERVICES OVER TIME. THANK YOU, DR. PERRIN. WHAT WERE THE PROPORTIONS IN TERMS OF THE PUBLIC INSURANCE VERSUS PRIVATE INSURANCE BY RACE? >> THEY ARE DRAMATICALLY DIFFERENT CERTAINLY. SO AFRICAN AMERICAN KIDS HAVE A HIGHER RATE OF PUBLIC INSURANCE THAN DO WHITE CHILDREN. AS I SAID, WE CONTROLLED FOR THAT DIFFERENCE IN ALL OF OUR ANALYSES. WE HAVE DONE THE BEST WE CAN TO ERADICATE THE DIFFERENCES IN INSURANCE IN THE RESULTS WE HAVE. WHEN WE DID THAT I MIGHT SAY THE DIFFERENCES EXPAND RATHER THAN CONTRACTED. >> WAS THERE ANY CONSIDERATION TO LOOK AT KIDS' ZIP CODES? >> THERE WAS CONSIDERATION TO LOOK AT KIDS' ZIP CODES, WE MAY ACTUALLY DO THAT BECAUSE THAT'S AN INTERESTING ISSUE WHETHER GEOGRAPHIC ACCESS MAKES A REAL DIFFERENCE HERE. I THINK IT DOES BUT WE HAVE NOT LOOKED AT THAT, WONDERFUL QUESTION. >> THE WORK WE HAVE DONE WITH THAT WOULD INDICATE IT'S NOT GEOGRAPHIC ACCESS, IT'S SOCIO ECONOMIC ACCESS CH THAT'S SOMETHING MAYBE FOR THE FUTURE. THANK YOU. >> ARE THERE ENOUGH DIFFERENCES IN THE ODDS RASH OWES FOR THE DIFFERENCE PROCEDURES THAT MIGHT ALLOW YOU TO USE THAT TO EXPLORE POTENTIAL REASONS FOR THE DISPARITY? SOME OF THESE ARE MUCH MORE EVASIVE THAN OTHERS, SOME MAYBE MORE LIKELY TO BE COVERED OR NOT -- OR REQUIRE PRIOR AUTHORIZATION OR NOT REQUIRE PRIOR AUTHORIZATION. I WONDER IF BY LOOKING AT THE DIFFERENCES AMONG THE PROCEDURES YOU MIGHT BE ABLE TO TEASE OUT THE REASON FOR THE DISPARITIES. >> GREAT IDEA. WE'LL TAKE THAT BACK AND THINK WE CAN DO THAT. I THINK WE HAVE A SAMPLE SIZE LARGE AMOUNT TO DO THAT. THAT'S A WONDERFUL IDEA. THANKS, DAVID. >> OKAY. SO IT SEEMED ONE OF THE MOST SURPRISING FINDINGS TO ME ANYWAY WAS THE FACT THERE WAS A HIGHER USE OF SOME OF THE SERVICES, WAS THAT SURPRISING TO YOU IN THE INVESTIGATION? DID YOU EXPECT TO ENCOUNTER THAT AT ALL? >> IF YOU LOOK, THE ONLY ONE WHICH THERE WAS SIGNIFICANT DIFFERENCES IN THE SENSE OF HIGHER WAS THE USE OF DEVELOPMENTAL TESTING. WE DID NOT -- WE HAVE MEASURES OF SEVERITY WE INCLUDE MISDEMEANOR THE ANALYSIS BUT I ACTUALLY DO NOT BELIEVE WE INCLUDE IQ OR DEVELOPMENTAL STATUS AS A CONTROL VARIABLE. WE CERTAINLY COULD GO BACK P AND LOOK AT THAT AND THAT'S PROBABLY WORTH DOING. MY GUESS IS THAT PLAYS A REAL ROLE HERE. >> DO YOU KNOW IN A GENERAL SENSE WHAT THE RATIO IS OF SERVICES PROVIDED IN THE PARTNER SYSTEM? FOR BLACK VERSUS WHITE KIDS AS A WHOLE EXCLUDING AUTISM? >> I THINK WE DO KNOW A NUMBER OF THINGS. THE ANSWER IS BASICALLY YES. WE KNOW A NUMBER OF THINGS ABOUT VARIATIONS IN CARE. IT GOES -- THE MAJOR VARIATION THAT WE HAVE FOUND 'ALLY HAS BEEN THEIOUS OF SUBSPECIALTY CARE.S;< IN GENERAL WHAT WE HAVE FOUND IS THAT THIS MAY GET BACK TO THE GEOGRAPHIC SOCIAL CLASS DIFFERENCES AS WELL. IT'S NOT EASY TO GET TO SEE SUBSPECIALIZESES, THAT'S A SIMPLE WAY OF SAYING IT. THAT THOSE YOU HAVE TO RATHER UNPLEASANT BRIDGES TO GET DOWNTOWN BOSTON AND OUR SUBSPECIALISTS. WE LEARNED FROM DOING FOCUS GROUPS WITH PARENTS THAT THAT'S A HUGE BARRIER TO SEEING OUR SUBSPECIALISTS SO INDEED WE DO THINK THERE ARE SOME PROBLEMS A NUMBER OF COMMUNITIES FACE WITH RESPECT TO THE UTILIZATION OF SUBSPECIALTY SERVICES NOT RELATED TO AUTISM. >> SO YOU'RE SAYING GENERAL SERVICE -- SERVICES ARE SIMPLY PROVIDED FOR BLACK, WHITE KIDS IN ITS ONLY SPECIALTY SERVICES LIKE AUTISM? WHERE THERE'S A SIGNIFICANT DISPARITY? IS THAT RIGHT? >> NO, NO, NO. I THINK AS AN INSTITUTION WE PROVIDE VERY SIMILAR SERVICES ACROSS THE SPECTRUM REGARDLESS OF RACE, ETHNICITY AND AND STATUS, SO FORTH. ON THE OTHER HAND, THINKING THE CHRONIC ILLNESSES IN CHILDREN WHICH ARE OBESE PITY, ASTHMA, MENTAL HEALTH AND NEURODEVELOPMENTAL DISABILITIES INCLUDING AUTISM THESE ARE ALL WORSE IN POORER COMMUNITIES. HIGH QUALITY CARE BUT WE ALSO KNOW THAT REALLY SOLVE THE PROBLEMS FOR EXAMPLE OF OBESITY IN CHELSEY, MASSACHUSETTS, IT'S MORE THAN PROVIDING HIGH QUALITY MEDICAL CARE. >> HIGH QUALITY CARE, I GUESS WHAT I WAS TRYING TO UNDERSTAND IS WHERE DOES THE SYSTEM BREAK DOWN FOR THE IMMUNITIES AND IT SOUNDED TO ME LIKE YOU'RE SAYING IN THE CASE OF BLACK FAMILIES, THIS STUDY, THEY SEEM TO GET GP LEVEL CARE AS IT WERE, AND A SIMILAR LEVEL TO ANYONE BUT THE SPECIALIST CARE, THEY DO NOT GET. AND I HEAR YOU SUGGESTING THAT PERHAPS TRANSPORTATION IS A BARRIER AND PERHAPS THERE ARE OTHER BARRIERS. I ALSO HEARD YOU SUGGEST IN FACT, SOME OF THESE GROUPS MIGHT HAVE WORSE PROBLEMS WITH THE SUBSPECIALTIES, YET THEY'RE UNDER-REPRESENTED WHICH WOULD MAKE THE SHORT FALL ACTUALLY EVEN WORSE THAN THEIR STATISTICS WOULD SHOW. >> I AGREE WITH THAT. AND I THINK THAT THE -- AGAIN, FROM OUR WORKING WITH FAMILIES, LISTENING TO THEIR STORIES, WHAT THEY REALLY TELL US ARE SEVERAL THINGS. ONE IS, THERE ARE REAL BARRIERS TO GETTING TO SEE THE SPECIALISTS THAT THERE ARE LANGUAGE BARRIERS THAT OCCUR SUBSPECIALTY UNITS, THERE ARE THE PHYSICAL BARRIERS OF GETTING THERE. FAMILIES WHO ARE POOR OBVIOUSLY AS WE KNOW WELL, IT'S DIFFICULT TO TAKE TIME OFF FROM YOUR MARGINAL EMPLOYMENT TO BE ABLE TO TAKE YOUR CHILD IN TO BE SEEN. FAMILIES MAY NOT AGREE THIS IS REALLY A VALUABLE REFERRAL. THEY MAY NOT SEE THIS IS SOMETHING THEY WANT TO DO. SO WE HEAR ALL THOSE THINGS FROM OUR FOCUS GROUPS WITH FAMILIES. >> IF WE WERE TO SAY MASS GENERAL REPRESENTED THE BEST STANDARD OF CARE, IN THE BOSTON AREA, AND THERE ARE MANY PROVIDERS THAT ARE MAYBE A STEP DOWN FROM YOU IN CAPABILITIES AND SO FORTH. IS THERE ANY STUDY THAT LOOKED AT WHETHER SOME OF THE SHORT FALL YOU SHOW IN YOUR DATA IS PICKED UP BY OTHER PROVIDERS MAYBE COMMUNITY PROVIDERS, RESOURCES THAT YOU DO BUT MAY HAPPEN TO BE CLOSER TO THE PEOPLE WHO NEED THE SERVICES? >> SO I THINK I WOULDN'T SAY WE PROVIDE THE BEST CARE IN THE BOSTON AREA BUT WE PROVIDE HIGH QUALITY CARE IN THE BOSTON AREA, IN GENERAL CHILDREN GET HIGH QUALITY CARE IN BOSTON THOUGH WE DID SOME STUDIES YEARS AGO, THAT MIGHT IMPLY YOU GET BETTER CARE IN NEWHAVEN OR ROCHESTER THAN BOSTON. I DON'T WANT TO GO BACK TO THOSE OLD STUDIES OF OURS BUT TO RESPOND TO YOUR QUESTION MORE DIRECTLY, I DO THINK WE HAVE A PROBLEM OF GETTING AD QUAD SPECIALIZED CHILDREN TO MANY COMMUNITIES. GIVEN HIGH QUALITY YOUNG PEOPLE IN SUBSPECIALTIES IT'S A BIG ISSUE AT THIS POINT, WE DON'T HAVE GOOD DISTRIBUTION OF PEDIATRIC SUBSPECIALTIES SO THERE ARE SOME REAL AREAS WE OOH NOT PROVIDING HIGH QUALITY CARE. WE NEED TO IMPROVE THAT. THAT'S ABSOLUTELY CRITICAL THAT WE TO >> TIME FOR ONE MORE. >> THANK YOU VERY MUCH, DR. PERRIN FOR DOING THIS. I WAS WONDERING IF YOU'RE ABLE TO DIFFERENTIATE, A PARENT REFERRAL AND PHYSICIAN REFERRAL. AND I GREW UP IN BOSTON SO I FIGURE WHETHER YOU LIVED IN ROCKS FORD OR ROCHESTER OR WHETHER IF YOU WERE A FAMILY WHO WAS AWARE OF WHAT YOUR CHILD NEEDED AND YOU ARE EDUCATED ABOUT IT, I THINK YOU WOULD WALK NEEDLES ON FIRE TO GET IT. I THINK THE PROBLEM MIGHT BE -- I WANTED TO KNOW WHAT YOU THOUGHT AND WHAT YOUR STUDY SAID BUT I THINK THE PROBLEM MIGHT BE THE PARENT EDUCATION, IN IMMUNITIES OF COLOR THERE SUSPECT A LOT OF -- THERE'S AUTISM AWARENESS PER SE BUT THERE IS AN AUTISM AWARENESS IN WHAT INTERVENTIONS ARE AVAILABLE, WHAT SERVICES YOU SHOULD GET. HOW IMPORTANT IT IS TO GET THE SUBSPECIALTY. AND THEN THE OTHER AREA IS A LOT OF LOW INCOME KIDS HAVE MEDICAID. IT HAS A LONG WAITING LIST. A LOT OF SPECIALISTS DON'T EVEN TAKE OR THEY TAKE A CERTAIN PERCENTAGE AND CUT OFF SO THAT COULD BE ANOTHER BARRIER AND I KNOW JOHN IS HERE BUT THAT'S AM, CMS PROBLEM I THINK WHEN WE SAY YOUR CHILD HAS A MEDICAL CONDITION, WE SHOULD BE ABLE TO GET IT BECAUSE IT'S MEDICALLY NECESSARY, WHETHER YOU HAVE BOUGHT PRIVATE INSURANCE OR PUBLIC INSURANCE. I LIKE TO KNOW WHAT YOU THINK ABOUT THAT. IF PATIENT REFERRAL VERSUS PARENT REFERRAL. >> NOT AUTISM BUT IN OTHER MORE GENERAL DOZENS OF SUBSPECIALTY AREAS WE TRY TO UNDERSTAND MORE ABOUT HOW COMMUNITIES UNDERSTAND REFERRALS. IT'S HALF IN HALF. THAT'S TO SAY PART OF IT REALLY IS THAT THE PHYSICIANS AREN'T NECESSARILY FOLLOWING UP ADEQUATELY TO MAKE SURE REFERRAL TOOK PLACE AND WE TRIED TO PUT IN BETTER SYSTEMS IN OUR UNITS SO STAFF JOB IS TO MONITOR REFERRALS AT THAT LEVEL. BUT IT'S A COMPLICATED ISSUE, NOT SO MUCH KNOWLEDGE BUT P PARENTS HAVE MANY THINGS ON THEIR PLATE. A LOT OF THINGS TO WORRY ABOUT. THEY WORRY ABOUT FOOD ON THE TABLE AND CHOTTING FOR CHILDREN AND SHOES AND SO FORT. SO THEY HAVE TO SET PRIORITIES AS TO HOW THEY'RE GOING TO SPEND ENERGY AND TIME. WE HEAR THAT FROM PARENTS, I'M NOT SURE THIS REFERRAL IS THAT VALUABLE TO MAINE THEY DON'T QUITE SAY IT IN THOSE TERMS THAT'S MY TERMS BUT WE HEAR THAT AS WELL AS ONE OF THE OTHER PIECES OF THAT. SO THERE'S MANY BARRIERS WITH WE PUT INTO PLACE WITH THAT. OUR SPECIALISTS ALL TAKE MEDICAID BUT THERE WAS A STUDY YOU MAY HAVE SEEN IN CHICAGO TWO OR THREE YEARS AGO WHICH LOOK AT WHAT HAPPENS WHEN PEOPLE CALLED FOR APPOINTMENTS TO PEDIATRIC SUBSPECIALISTS, I DON'T REMEMBER WHICH INSTITUTION AND INDEED IF THEY HAD MEDICAID INSURANCE THE APPOINTMENTS WERE FOUR MONTHS OFF, PRIVATE INSURANCE WERE SEEN WITHIN TWO WEEKS. THINGS LIKE THAT SO THERE'S MORE SUBTLESIS CRIMINATION THAT OCCURS THAT LEVEL TOO. I CAN'T SAY WE DON'T HAVE EVIDENCE THAT OCCURS IN OUR SYSTEM, WE DID LOOK AT THAT, WE COULDN'T DOCUMENT THAT IN OUR SYSTEM. SO THERE'S BARRIERS FOR REFERRALS TO TAKE PLACE. >> A FOLLOW-UP, WERE YOU ABLE TO ASK THOSE FAMILIES AND WERE THEY ABLE TO SAY THAT THEY WERE -- THEY HAD PARENT EDUCATION OR HAD ADVOCATES ADVOCATING AND TELLING THEM IT'S IMPORTANT TO GET THIS OR THIS IS WHERE AUTISM AFFECTS THE WHOLE BODY. I FIND THAT IT'S PARENTS WHO ARE WELL INFORMED ARE MOST LIKELY IF THEY'RE TOLD IT'S IMPORTANT THEY'RE MOST LIKELY TO GET THE SERVICES. RATHER THAN PATIENTS WHO ARE JUST TOLD BY DOCTOR BUZZ THE DOCTOR YOU SEE THEM IN TEN MINUTES BUT IF YOU SEE ADVOCATE AND PARENT SUPPORT GROUPS AN ACCESS TO THE INTERNET, LOW INCOME FAMILIES PROBABLY DON'T HAVE ACCESS TO THE INTERNET, DON'T OWN A COMPUTER, IT MAKES IT THAT MUCH HARDER. >> IT'S TERRIBLY IMPORTANT IN MY OWN CAREER WE HAVE INVOLVEDDED PARENTS FROM THE BEGINNING ESSENTIALLY ALL RESEARCH AND OTHER WORK THAT I HAVE DONE AND IT'S TREMENDOUSLY VALUABLE TO DO THAT. I THINK IT'S VERY MUCH WORTH SAYING IN POOR COMMUNITIES PARENT ADVOCACY PROGRAMS ARE FAR LESS WELL DEVELOPED THAN MIDDLE CLASS COMMUNITIES. WE KNOW THAT. YOU'RE RIGHT ON TARGET, IF YOU HAD SOMEONE IN YOUR COMMUNITY WHOM YOU TRUSTED WHO SAID THIS IS A VALUABLE THING TO BE DOING, YOU'RE MORE LIKELY TO DO IT SO I COULDN'T AGREE MORE. IT CERTAINLY IS TRUE IN POORER COMMUNITIES THAT I WORK IN. ADVOCACY IS DEVELOPING. WE'RE WORKING ON THAT BUT IT'S NOT SOROCHES MIDDLE -- I THINK IT'S A CRITICAL ISSUE. THANK YOU FOR RAISING THAT. >> I KNOW THERE ARE MORE QUESTIONS. WE BETTER MOVE ON, THIS IS ONE OF THE REAL ENTRUSTED THE COMMITTEE AS WELL SPEAKING PARENT PHYSICIAN EFFORTS TO ADDRESS WANDERING. >> I DIDN'T PUT TOGETHER SLIDE FOR THIS. I KNOW YOU HAVE A PANEL THIS AFTERNOON ON THIS ISSUE AND IT'S A TREMENDOUSLY IMPORTANT ISSUE THAT REALLY DOES NEED ATTENTION. I THINK I JUST WANTED TO MAKE A VERY FEW COMMENTS IN THIS AREA, THAT'S WHY WE LABEL COMMENTARY RATHER THAN PRESENTATION, FIRST OF ALL, I THINK CLINICS PARENTS ADVOCATES KNOW HOW PAINFULLY COMMON WANDERING AND BAD OUTCOMES OF WANDERING ARE. WE'RE ALL VERY SURPRISED AND HUMBLED BY THE IAN STUDY THAT CAME OUT A YEAR OR TWO AGO THAT LOOKED AT THE IAN SAMPLE AND SHOWED THAT HALF THE CHILDREN IN THAT SAMPLE HAD HISTORY OF WANDERING, A QUARTER WERE WANDERING ENOUGH THAT IT WAS REALLY DANGEROUS, WORRYSOME TO THEIR HEALTH. SO THIS IS CLEARLY AN ISSUE. FOR US. I'LL WEAR MY PEDIATRIC HAT IN A MOMENT SAY THAT IT'S AN AREA, IF YOU LOOK BACK TO THE THE 2007 ACADEMY PEDIATRICS WORK ON GUIDELINES AND P RECOMMENDATIONS FOR THE DIAGNOSIS AN TREATMENT OF AUTISM, WANDERING WAS NOT EVEN MENTIONED. IT JUST IS NOT THERE. IN 2007 REPORT. I'M SORRY ABOUT THAT. I THINK THAT'S UNFORTUNATE. IT HAS CERTAINLY DEVELOPED IN THE CONSCIOUSNESS OF FAMILIES AND CERTAINLY DEVELOPED CONSCIOUSNESS OF PRACTICING PHYSICIANS. WE'RE VERY MUCH INTERESTED IN INCREASING PHYSICIAN ATTENTION TO THAT, THE NEW TOOL KIT THAT IS OUT HAS INFORMATION BOTH FOR PHYSICIANS AND PHYSICIAN CAN GIVE TO PARENTS ABOUT WANDERING, WE'RE ENCOURAGING THIS BE USED AS ACTIVELY AS POSSIBLE. I KNOW THIS GROUP HAS DONE VALIENT WORK TO DEVELOP A V CODE FOR WANDERING 40.1 I BELIEVE IT IS SOMETHING LIKE THAT AND I ASKED OUR STAFF TO SEE IF WE HAVE ANY EVIDENCE FROM ANY DATABASES WE HAVE ACCESS TO TO FIGURE OUT WHETHER IT'S BEING USED AND THE SIMPLE ANSWER IS NO. WE DON'T HAVE -- FIRST MOST DATABASES WE HAVE ARE NOT RECENT ENOUGH TO SHOW THAT THERE'S BEEN ANY USE OF THIS B CODE AND THE LITTLE DATA WE HAVE WHICH IS NOT BEING USED, I WANT TO BE SOMEWHAT HONEST AND SAY I'M NOT SURPRISED. I BELIEVE THE USE OF D CODES GETTING A LITTLE INTO ARCANE KNOWLEDGE, BUT THE USE OF D CODES IS MARGINAL. THE REASONS FOR THE LACK OF USE OF V CODES IS ALMOST NO PUBLIC OR PRIVATE PAYER WILL REIMBURSE PHYSICIANS FOR V CODE LISTED AS A SERVICE. SO THERE'S VERY LITTLE INCENTIVE FOR DOING SO, THE PRIMARY INCENTIVE WOULD BE IF YOU'RE IN A PLACE TO FOCUS ON WANDERING AN UNDERSTAND SOMETHING ABOUT RATES OF WANDERING, I THINK WE COULD PROBABLY > SINCE WE WILL BE HAVING THAT ROBUST DISCUSSION THIS AFTERNOON, LET'S NOT LAUNCH INTO IT NOW BECAUSE THAT WOULD PROBABLY TAKE THE REST OF THE MORNING BUT SPECIFIC QUESTIONS FOR DR. PERRIN ABOUT WHAT HE HAD TO SAY. >> THANK YOU, DR. PERRIN FOR BEING HERE TODAY. AND TALKING ABOUT THIS IMPORTANT TOPIC. YOU ARE CORRECT PEDIATRICIANS ARE PART OF THE PREVENTION SIDE OF WANDERING. OUR GOAL AS ADVOCATES ONf‡ WANDERING IS TO PREVENT WANDERING. P AND THEN THE OTHER SIDE IS FIRST RESPONDERS AN RECOVERY AFTER THE KIDS WANDER. ONE PIECE OF DATA THAT WAS NOT INCLUDED IN THE STUDY IN PEDIATRIC, DO YOU HAVE THAT CHART? CAN WE PUT THAT CHART UP? I CAN TELL YOU ONE OF THE PIECES OF DATA SHOW THAT OVER 51% OF THE FAMILIES WHO PARTICIPATE IN THIS STUDY SAID THAT THEY HAD NOT RECEIVED ANTICIPATORY GUIDANCE ABOUT ANDING ARE FROM ANY HEALTHCARE PRACTITIONER. ONLY 14% SAID THEY HAD HEARD ABOUT POTENTIAL FOR ANDING ARE FROM A PEDIATRICIAN, FAR MORE HEARING FROM THE ADVOCACY COMMUNITY. SO I UNDERSTAND THAT THE AAP CREATED THE SPAC SHEET, AND THAT'S GREAT, IT'S PART OF THE AUTISM TOOL KIT BUT MY UNDERSTANDING ALSO IS PHYSICIANS ARE REQUIRED THE TO PAY FOR THE AUTISM TOOL KID -- TOOL KIT SO UPTAKE IS PRETTY LOW. WHAT CAN WE DO AS ADVOCACY IMMUNITY TO ENCOURAGE PHYSICIANS PEDIATRICIANS PARTICULARLY, TO INCLUDE WANDERING AS PART OF THE ANTICIPATORY GUIDANCE TO TALK RESOURCES AND MAKE REFERRALS FOR FAMILIES WHOSE CHILDREN HAVE EXHIBITED POTENTIAL L FOR WANDERING? >> THERE'S A NUMBER OF THINGS WE CAN WORK TOGETHER ON IN THIS AREA. I THINK THE PEDIATRIC COMMUNITY DIDN'T FRANKLY -- WAS NOT AWARE OF THIS IN THE MID 2000s. THIS HAS BECOME SOMETHING WE CERTAINLY AS A COMMUNITY BECOME SUBSTANTIALLY MORE AWARE OF AND WE WOULD LIKE THE SEE AS PART OF THE KIND OF ANTICIPATORY GUIDANCE WE PROVIDE TO FAMILIES RAISING CHILDREN WITH NEURODEVELOPMENTAL DISORDERS THAT ARE CHILDREN LIKELY TO HAVE WANDERING. OUR STRATEGIES FOR ADVISING WHAT TO DO OBVIOUSLY INCLUDE THINGS LIKE TOOL KITS BUT WE DO A TREMENDOUS AMOUNT OF CONTINUING EDUCATION, NATIONALLY AND LOCALLY, AS WELL, AUTISM IS AN AREA THAT'S EXTREMELY INTERESTING TO PEDIATRICIANS THIS POINT. SO IF WE PUT ON A CONFERENCE THAT RELATES TO AUTISM, WE USUALLY HAVE A LOT OF PEOPLE IN THE PEDIATRIC COMMUNITY WHO COME, BECAUSE THEY'RE DESPERATE FOR MORE INFORMATION HOW TO DO THIS BETTER. WE INVOLVE PARENTS A LOT IN A NUMBER OF THOSE CONTINUING MEDICAL EDUCATION ACTIVITIES AS WELL. AND THEY'RE ARTICULATE ABOUT THE KINDS OF ISSUES THEY'RE DEALING WITH. SO WE HAVE WORK TO DO TO MAKE PATIENTS MORE AWARE OF THAT BUT WE ARE COMMITTED TO MAKING THAT HAPPEN. >> WOULD IT BE POSSIBLE TO HAVE A PANEL AT THE NEXT AAP CONFERENCE FOCUSED ON AUTISM AND WANDERING? >> I CAN'T PROMISE YOU THAT BUT WE CAN PUT THAT OPT TABLE, I'M EMBARRASSD TO SAY THE NEXT NCE IS ALREADY PLANNED ABOUT A YEAR IN ADVANCE. SO WE'RE TALKING A YEAR FROM NOW BUT LET'S WORK ON IT. I WOULD BE HAPPY TO TRY TO MAKE IT HAPPEN. >> IF ANYONE DROPS OUT, SURE WE WOULD BE HAPPY -- >> I APPRECIATE THAT. >> A LOFT JOURNALS HAVE EDITORIAL PAGES WHERE IMPORTANT TOPICS CAN BE BROACHED IN A SHORT FASHION. WITH IACC BE WELCOME TO SUBMIT SOMETHING LIKE THAT? >> ABSOLUTELY. WE CAN HELP ADVOCATE FOR THAT. WE CAN'T BE MAKE PROMISES, THAT'S A GREAT IDEA. >> JIM, ONE THOUGHT TOO, I SHARE THIS WITH YOU OFFLINE BUT MAYBE TO TAKE THAT GUIDANCE AVAILABLE FOR PARENTS AND ACTUALLY TURN INTO GUIDANCE FOR PRACTITIONERS AND GET OUT OF THE TOOL KIT AND MAYBE AVAILABLE MORE FOCUS SO THAT MIGHT BE ONE WAY OF BRINGING MORE ATTENTION TO IT. >> THAT'S REALLY WORTH EXPLORING. THERE'S A LOT OF GUIDANCE TO PARENTS IN THE TOOL KIT. AND WHEN I HAVE BEEN WONDERING IS HOW MUCH COULD GO UP ON OUR PARENT P WEBSITE, HEALTHY CHILDREN.ORG, THAT MIGHT BE TRYING TO HAPPEN, I NEED TO EXPLORE OPPORTUNITIES ARE THERE. >> I WAS WONDERING IF -- FIRST I WANT TO -- JUST LAST NIGHT I SENT TO YOU, DR. DANIELS, THERE WAS A CHILD IN D.C. NORTHEAST THAT ANDERS, 7-YEAR-OLD AUTISTIC KID THAT WANDERD OFF AND DIED. THE POLICE FOUND HIM DEAD. AND I THINKw2 STATEWIDE CHAPTERS, AUTISM AND WANDERING. EACH CHAPTER HAS A LIST SERVE. THEY CAN REPEATEDLY JUST EVERY FEW MONTHS SEND THAT LIST SERVE OUT AND SAY PLEASE TALK TO YOUR FAMILIES THAT HAVE CHILDREN WITH AUTISM ABILITY WANDERING AND -- ABOUT WANDERING. JUST TO BE AWARE. A LOT OF PARENTS ARE NOT EVEN AWARE THEIR CHILDREN CAN TAKE OFF, HAVE NO FEAR OF SAFETY AND WANDER TO DANGER. I THINK WAITING FOR ANOTHER YEAR OR ANOTHER AAP MEETING, THAT IS A DAY TOO LATE AND MORE LIVES TO BE LOST. I THINK WE CAN DO SOMETHING AT LEAST WITH YOUR CHAPTER AND JUST BECAUSE IN MINNESOTA THE AAP HAS MEETINGS AND IT COULDN'T HURT TO GIVE THEM FIVE MINUTES TO TALK ABOUT AUTISM AND WANDERING. >> SO THE BROAD ISSUE HIRE, I SAY I THINK DOE A GOOD JOB AT THE ACADEMY COMMUNICATING WITH FAMILIES AND WITH THE PEDIATRIC COMMUNITY. WE ALSO THINK WE CAN DO AN EVEN BETTER JOB. WE'RE IN THE MIDST OF REDOING OUR COMMUNICATION STRUCTURE SO WE'RE GETTING THE MESSAGES OUT TO BOTH CONSTITUENCIES, PARTS AND PEDIATRICIANS, I HATE TO SAY ITS, I HAVE TO LEARN TO TWEET. I'M OLD BUT I LEARNED TO DO THAT AND THIS IS THE KIND OF THING I TWEET, THAT KIND OF NOTION SO WE'RE TRYING TO GET THE MESSAGE OUT IN A BUNCH OF DIFFERENT WAYS. SO ANY MORE YOU CAN THINK OF, LET US KNOW. WE'LL TRY THEM, I PROMISE. >> SO YOU TWEET TODAY AFTER THE MEETING? >> ABSOLUTELY, I WILL ABOUT THIS ISSUE. I CAN ASSURE YOU I WILL TWEET ABOUT THIS ISSUE. >> THANK YOU SHOULD HAVE, DR. PERRIN T. NATIONAL AUTISM ASSOCIATION FROM RIDING THE BUS THIS MORNING ALSO HAS RESOURCES FOR FAMILIES AND IT WOULD BE POSSIBLE FOR THE AAP TO LOOK OVER THAT TOOL KIT, THERE MIGHT BE SOME INFORMATION THERE YOU CAN GET OUT TO YOUR MEMBERSHIP. I KNOW IT'S COMPLICATED IN TERMS OF WHAT TYPE OF DEVICES ARE AVAILABLE. AND THERE ARE STRENGTHS AND WEAKNESSES FOR EACH. IT'S MULTI-FACTORIAL APPROACH TO ALSO INCLUDE TRAINING FOR FIRST RESPONDERS. THERE'S A LOT THAT REALLY NEEDS TO GO INTO THIS INITIATIVE, TRAINING PARTS, FIRST RESPONDERS. SO IF A AP COULD L POSSIBLY LOOK AT SOME OF THE PRODUCTS THAT ARE AVAILABLE NOW AND UTILIZE THOSE TO GET OUT TO THEIR PEDIATRICIANS, THAT WOULD BE A NICE WAY TO NOT HAVE TO REPLICATE THE WHEEL WITH ANOTHER ORGANIZATION THAT'S DONE WORK IN THIS AREA ALREADY. THANK YOU. >> THAT'S EXACTLY THE KIND OF COLLABORATION WE WOULD LIKE TO DO. WE'LL WORK ON THAT FOR SURE. >> LET ME ASK -- WE'LL NOW MOVE TO PANEL ONCO MORBID CONDITIONS IN PEOPLE WITH AUTISM. WE'LL ASK DR. PERRIN TO PUT ON ANOTHER HAT AND THAT'S HEAD OF CLINICAL COORDINATING CENTER TO THE AUTISM TREATMENT NETWORK THE GIVE INTRODUCTION TO THE PANEL IN TERMS OF THE OVERVIEW OF COMORBIDITIES AMONG PATIENTS SERVED BY THE AUTISM TREATMENT NETWORK. >> THANK YOU VERY MUCH, ALAN. PATIENTS SERVED BY THE AUTISM TREATMENT NETWORK. >> THANK YOU VERY MUCH, ALAN.IF I CAN HAVE THE NEXT SLIDE. I HOPE YOU'LL FORGIVE ME FOR WEARING A FEW DIFFERENT HATS. BUT I'M HAPPY TO PUT ON THIS HAT FOR A WHILE. BUT I WOULD ALSO SAY THAT SOL OF YOU KNOW MY CAREER IS BASED IN UNDERSTANDING THE ISSUES THAT FAMILIES FACE RAISING CHILDREN WITH A VARIETY OF CHRONIC HEALTH CONDITIONS. I'M NOT AN AUTISM SPECIALIST, I REALLY CAME INTO THIS BECAUSE OF TIM BUIE AND OTHERS WHO CORRALLED ME ONE DAY AND SAID I GOT SOMETHING TO WORK ON, WOULD YOU HELP OUT. YOU WILL SEE MY INTEREST IS REALLY INFORMED A LOT OF WORK OF WHAT WE HAVE DONE WITH THE NETWORK OVER TIME. SO THE AUTISM SPEAKS AUTISM TREATMENT NETWORK CURRENTLY HAS 17 SITES IN NORTH AMERICA TWO IN CANADA, 15 SOUTH OF THE BORDER. WE ARE DEDICATED TO IMPROVING CARE FOR CHILDREN WITH AUTISM AND THEIRFAMILIES. THE NETWORK BEGAN WITH AN EMPHASIS ON MEDICAL CONDITIONS AMONG CHILDREN WITH AUTISM, TIM WILL BE MORE ARTICULATE THAN I AM LATER ON ABOUT GASTROINTESTINAL ISSUES IN CHILDREN WITH AUTISM BUT IT WAS THAT KIND OF THINKING THAT REALLY LED TO THE FORMATION OF THE AUTISM TREATMENT NETWORK. WE ALSO SERVE AS AUTISM INTERVENTION RESEARCH NETWORK ON PHYSICAL HEALTH, ARP WHICH IS FUNDED THROUGH MATERNAL CHILD HEALTHCARE THAT ALLOWED US TO EXPAND THE WORK OF THE NETWORK, TO DO SUBSTANTIAL AMOUNT OF CLINICAL RESEARCH, WE HAVE 16 OR 17 STUDIES FINISHED OR ONGOING WITHIN THE NETWORK AND ALLOWED US TO PUT A GOOD DEAL OF ENERGY IMPROVING OUR EFFORTS TO IMPROVE CARE AND DISSEMINATE THE FINDINGS IN OUR NEW CARE MODELS MUCH MORE BROADLY. I'M GOING TO TALK ALMOST ENTIRELY ABOUT ONE PIECE OF THE ATN WORK, OUR REGISTRY, WHICH WE BEGAN THE BEGINNING OF THE NETWORK. MUCH WHAT I'M GOING TO TALK ABOUT WAS REPORTED IN THE NOVEMBER 2012 SUPPLEMENT TO PEDIATRICS. I WANT TO STRESS THAT SUPPLEMENT IS OPEN ACCESS SO ANYONE CAN GET COPIES OF ANY PAPERS IN THE SUPPLEMENT BY GOING TO THE PEDIATRIC WEBSITE. YOU DON'T NEED A PASSWORD OR ANYTHING ELSE L TO GET TO THESE PAPERS. THE REGISTRY THAT WE HAVE WITHIN THE AUTISM SPEAKS AUTISM TREATMENT NETWORK CURRENTLY HAS OVER 6300 CHILDREN WITH DATA, REALLY LARGE ROBUST REPOSITORY OF INFORMATION. THE SUPPLEMENT INCLUDES CLINICAL PRACTICE GUIDELINES AND NETWORK RESEARCH REPORTS OF A VARIETY OF CLIENTS. I WON'T SPEND TIME TODAY TALKING VERY MUCH ABOUT THOSE PARTS BUT WILL LIMIT IT MAINLY TO REGISTRY DATA. WHAT ARE SOME OF THE CO-EXISTING SYMPTOMS AND CONDITIONS AMONG CHILDREN WITH AUTISM? OBVIOUSLY GASTROINTESTINAL NUTRITION SYMPTOMS ABOUT DISORDERS ARE DISCUSSED, TALKED ABOUT AND INCREASINGLY STUDIED. VARIATIONS IN DIET PREFERENCES, DIET SUPPLEMENTS THAT CHILDREN WITH AUTISM ARE INVOLVED WITH. THERE ARE QUESTIONS ABOUT GUT MOTILITY, THERE'S A VERY IMPORTANT WAVE AMONG CHILDREN WITH AUTISM AND ONE CAN THINK ABOUT THE FACT THAT THERE ARE NEUROTRANSMITTERS IN THE GASTROINTESTINAL SYSTEM, AND THEREFORE IF THERE ARE NEUROTRANSMITTER PROBLEMS PART OF THE LARGER SYNDROME OF AUTISM ARE THOSE ALSO AFFECTING NEUROTRANSMITTERS IN THE GI SYSTEM. WE NEED MORE INFORMATION IN THIS AREA. THERE'S A LOT OF INTERESTING INFORMATION RECENTLY ABOUT THE IMMUNOLOGY OF THE GI SYMPTOM -- SYSTEM, EXCUSE ME. AND WHETHER THAT VARIATION IN IMMUNOLOGY AND HOW WE UNDERSTAND MAY ALSO INFLUENCE HOW CHILDREN WITH AUTISM RESPOND&R BEING PLACED IN THEIR INTESTINES. FINALLY, THERE'S A LOT OF INTERESTING WORK IN THE AREAS OF THE MICROBIOME, THERE WAS A RECENT PAPER MANY OF US SAW IN THE HOW DO YOU SAY IT, PLUS WHICH LOOKS AT VARIATIONS IN THE MICROBIOME AMONG CHILDREN WITH AUTISM. THESE ARE AREAS WE ARE IN DESPERATE NEED OF MORE INFORMATION. THIS IS A VERY IMPORTANT AREA B TO WORKING ON. CERTAINLY IN THE NETWORK WE LOVE TO HAVE THE ADVICE OF THE IACC ON THE KINDS OF AREAS YOU PRIORITIZE THAT YOU THINK OUGHT TO BE STUDIED IN THIS RELATIVELY LARGE POPULATION WORKING ON. SEIZURE DISORDERS ARE COMMON AMONG CHILDREN WITH AUTISM, SLEEP DISORDERS ARE COMMON AMONG CHILDREN WITH AUTISM, A VARIETY OF OTHER MENTAL HEALTH CONDITIONS ARE COMMON AS WELL, I HAVEN'T P PUT DOWN METABOLIC AND P MITOCHONDRIAL AND OTHER DISORDERS. I HAVEN'T PUT DOWN ENDOCRINE LOGIC DISORDERS. THOSE ARE WORTH ADDRESSING AND UNDERSTANDING MORE AMONG YOUNG PEOPLE WITH AUTISM THAN WE CURRENTLY DO. WHAT'S CHANGED DRAMATICALLY IS A DECADE AGO PEOPLE BASICALLY SAID CHILDREN WITH AUTISM HAVE GASTROINTESTINAL PROBLEMS, THEY DON'T SLEEP WELL, IT'S PART OF THE AUTISM. I BELIEVE AS A IMMUNITY OF PARENTS ADVOCATE AND CLINICS WE CHANGE THAT. I THINK WE HAVE COME TO THE POINT TO RECOGNIZE THESE CO-MORBID CONDITIONS REALLY DO EXIST. WE HAVE A LOT TO UNDERSTAND ABOUT WHAT THEY ARE AS A CLINICIAN I HAVE BEEN TEACHING FOR 30 OR 40 YEARS BUT WE DON'T REFER TO CHILDREN AS CYSTICS OR LEUKEMICS BUT REFER TO THEM AS CHILDREN FIRST WHO HAVE LEUKEMIA THE SAME IS TRUE WITH AUTISM. CHILDREN FIRST MEANS WE NEED TO THINK ABOUT THE WHOLE CHILD, ALL THE ASPECTS OF HER DEVELOPMENT, HER PHYSIOLOGY, ET CETERA THAT MAYBE RELEVANT TO TRYING TO MAKE A CHILD HEALTHIER, HAPPIER AND MORE FUNCTIONAL OVER TIME SO THIS IS PART OF THAT BROADER EFFORT HERE. LET ME PRESENT SOME OF THE DATA THAT WE HAVE FROM OUR REGISTRY. THIS IS FIRST DATA ON PREVALENCE GASTROINTESTINAL DISORDERS AND THE FIRST NUMBERED COLUMN HERE IS ASKING PARENTS IS YOUR CHILD ANY OF THEE IN THE PAST THREE MONTHS AT ALL, AND THE LAST COLUMN IS WERE THESE PROBLEMS ACTUALLY CHRONIC? I.E., DID THEY PERSIST THROUGH THREE MONTHS AND BEFORE THAT TIME AS WELL. SO NEEDLESS TO SAY THE CHRONIC COLUMN IS LOWER RATES THAN ANY IN THE LAST THREE MONTHS RATES ARE. IT'S IMPORTANT TO NOTE THAT HALF OF THE CHILDREN IN OUR SAMPLE HAD GICS PROBLEMS THE PREVIOUS THREE MONTHS ONE SORT OR ANOTHER. YOU CAN SEE THE RATES, CONSTIPATION IS CONSISTENTLY IN EVERY STUDY. THE MOST COMMON ONE, DIARRHEA, PAIN, NAUSEA AND BLOATING ARE QUITE COMMON IN POPULATION, MOST POPULATIONS FROM AUTISM. I FORGOT TO MENTION ABOUT THE DEMOGRAPHY OF OUR POPULATION WE'RE EXAMINING HERE. THIS IS A PREDOMINANT PLY YOUNGER POPULATION OF CHILDREN WITH AUTISM. 55% OF THE CHILDREN ARE PRE-SCHOOLERS. 45% ARE AGE 6 AND UP SO YOU WILL SEE EVIDENCE HERE THAT THERE'S MORE -- IT'S SOMEWHAT SKEWED TO YOUNGER POPULATIONS. OF CHILDREN WITH AUTISM, THAT'S TRUE FOR GI DISORDERS, MAYBE MORE TRUE WHEN WE GET TO OTHER CONDITIONS. THIS IS A -- JUST A TABLE WHICH SHOWS YOU A NUMBER OF STUDIES RELATING TO PREVALENCE OF GI DISORDERS IN CHILDREN WITH AUTISM. STRIKING RANGE VARIES FROM NINE TO 91% IN THESE STUDY THES SO TREMENDOUS NUMBER OF THEM TO DO THE HIGH QUALITY RESEARCH IN THIS AREA. IT'S WORTH NOTING MANY STUDIES DO NOT HAVE COMPARISON GROUPS HERE, SO IF YOU YOU HAVE A RED TUBE, A COMPARISON GROUP HERE, WITH THE EXCEPTION OF THE ONE FAR LEFT THERE, BLACK HERE, ALL THE OTHER STUDIES THAT HAVE COMPARISON GROUPS HAVE SUBSTANTIALLY HIGHER RATES OF GI DISORDERS AMONG CHILDREN WITH AUTISM THAN THE COMPARISON POPULATION. SO WE WILL CONTINUE TO DEBATE OVER THE NEXT YEAR OR TWO OR THREE WHETHER HIGHER RATES OF GASTROAMONG CHILDREN WITH AUTISM, FROMs NO DEBATE THEY'RE COMMON AMONG CHILDREN WITH AUTISM. THEY NEED TO BE ATTENDED TO, THEY NEED TO BE TREATED. AND THEY NEED TO BE MANAGEDDED. MOVE ON TO THE NOTION SEIZURE DISORDERS, EPILEPSY IN CHILDREN WITH AUTISM. THIS IS 2500 IN OUR SAMPLE, IN THIS POPULATION ABOUT 16% HAD HISTORY OF’Rs SEIZURES. WE FOUND NO DIFFERENT BY AUTISM DIAGNOSIS, BY GENDER, WE DID FIND HIGHER RATES OF SEIZURE DISORDERS AMONG WHITE AND LATINO POPULATIONS HERE. WE FOUND IQ DIFFERENCES WHO HAD SEIZURES AND LOWER IQs ON AVERAGE THAN CHILDREN WHO DID NOT HAVE SEIZURES. WE ALSO FOUND PARENTS REPORTED HIGHER LEVELS OF SKILL LOFTS AMONG CHILDREN WITH SEIZURE THAN CHILDREN WITHOUT SEIZURE. SO THIS IS CLEARLY AN IMPORTANT PROBLEM IN AUTISM, THERE ARE A LOT OF VERY IMPORTANT ISSUES TO UNDERSTAND HERE. WHICH INCLUDE INTERPICTAL DISCHARGES, BASICALLY CHILDREN THAT HAVE SEIZURE LIKE FOCI ON THEIR ELECTROENCEPHALOGRAMS, BUT DID NOT HAVE FRANK SEIZURES, AT THIS POINT WE DON'T KNOW ENOUGH ABOUT THIS POPULATION TO KNOW IF THIS IS A CLINICALLY IMPORTANT DIFFERENCE OR NOT AND MERITS TREATMENT, IT'S ONE OF A SERIES OF QUESTIONS WHICH WE NEED BETTER ANSWERS. THERE ARE ALSO BY THE WAY AMONG OUR POPULATION OF CHILDREN WITH SEIZURES HIGHER RATES OF GASTROINTESTINAL PROBLEMS AND HIGHER RATES OF SLEEP PROBLEMS. AND NO GREAT SURPRISE THERE, LOWER ADAPTIVE SCORES AMONG CHILDREN WITH SEIZURES AND ALSO LESS GOOD PERFORMANCE ON NUMBER OF CHILD BEHAVIOR CHECKLISTS SCALES IN THIS POPULATION TOO. MOVING TO SLEEP DISORDERS. PREVIOUS REPORTS, BASICALLY SAID THAT SLEEP DISORDERS, ONLY A THIRD OF CHILDREN THESE ARE VARIATION AGAIN AMONG REPORTS THE PATIENT WE HAD IN THE SUPPLEMENT, WE HAD CHILDREN, THIS TIME LIMITED TO AGES 4 TO 10 YEARS SLEEP DISORDER AVAILABLE AND WE CHARACTERIZE CHILDREN AS GOOD SLEEP -- NO EVIDENCE OF SLEEP PROBLEMS, MILD SLEEP PROBLEMS, ABOUT HALF THE POPULATION, AND CHILDREN WITH MODERATE TO SEVERE SLEEP PROBLEMS WHICH IS ABOUT 18% OF THE POPULATION. THESE ARE YOUNGER CHILDREN. AND WE DID FIND ROWER RATES IN THE OLDER POPULATION CHILDREN OVER 7 OR 84 TO 5-YEAR-OLDS IN THIS POPULATION. SEVERAL STUDIES WE PUBLISHED ONES REVIEWING THE DATA IN THE REGISTRY SHOW STRONG ASSOCIATION OF SLEEP PROBLEMS WITH PROBLEMS IN DAYTIME BEHAVIORS, NOT A SURPRISE CHILDREN WHO DON'T SLEEP WELL AT NIGHT ARE LESS LIKELY ABLE TO PERFORM WELL IN THE FOLLOWING DAYTIME TASKS TO WORK WELL IN THEIR EDUCATIONAL RANS. AND PARENTS ALSO HADN'T SLEPT WELL EITHER AND JOBS WHETHER IN THE OFFICE OR WHETHER PARENTING AT HOME, SO THIS IS A CRITICAL AREA WE CAN AND ARE DOING BETTER THAN WE USED TO. MOVING ON TO PSYCHIATRIC SYMPTOMS. PREVIOUS REPORTS SUGGEST THAT ABOUT HALF TO THREE QUARTERS OF CHILDREN WITH AUTISM HAVE ATTENTION DEFICIT HYPERACTIVITY DISORDER. ONE OF THE PROBLEMS HERE IS DSM-IV DISCOURAGED YOU FROM MAKING A DIAGNOSIS OF ADHD IF YOU ALREADY HAD A CHILD WITH A DIAGNOSIS OF AUTISM. THAT HAS CHANGED WITH DSM V, THAT'S ONE OF THE STEPS FORWARD BY THE WAY. IT MEANS ANY ANALYSIS OF CLAIMS DATA AND ANALYSIS OF CLINICAL DATA IS LIKELY TO UNDERESTIMATE PREVALENCE OF THINGS LIKE ATTENTION DEFICIT HYPERACTIVITY DISORDER AMONG YOUNG PEOPLE WITH AUTISM. THE MANY CHILD BEHAVIOR CHECKLIST WE FIND HIGH RATES OF HIGH SCORES ON THE ATTENTION SUBSCALE AND ABOUT ONE IN FIVE CHILDREN HAVE HIGH RATES HYPERACTIVITY SUBSCALE AS WELL. SO EVEN USING THOSE KINDS OF MEASURES WE FIND MODERATE TO HIGH RATES OF DISORDERS HERE. THIS IS ANOTHER STUDY USING THE NATIONAL CHILDREN'S SURVEY OF HEALTH. THAT'S ANOTHER PARENT, THAT IS NOT LEE DOWN AT THE BOTTOM. SO HAPPY TO SHOW PARENTS' WORK IN THIS CONTEXT, BUT IT'S WORTH NOTING THIS IS A NATIONAL SURVEY HUMAN HEALTH IN 2007, YOU CAN SEE AT THIS LEVEL PREVALENCE OF THESE CONDITIONS WITHIN THE STUDY SAMPLE 7% WITH ADHD 5% BEHAVIOR CONDUCT, 4% DEPRESSION, ANXIETY, HALF A PERCENT WITH AUTISM, BUT THE CO-MORBID BEHAVIORAL CONDITIONS WITH ANY OF THESE PRIMARY CONDITIONS IS VERY HIGH. LOOK AT AUTISM, 77% CO-MORBID PHYSICAL HEALTH CONDITIONS ALSO VERY HIGH. 39% AMONG CHILDREN WITH AUTISM, DRAMATIC FINDINGS HOW FREQUENT THESE CONDITIONS ARE, AND THE TOP FIGURE SHOWS OVERLAP AMONG THESE CONDITIONS, QUITE DRAMATIC OVERLAP. WE NEED TO UNDERSTAND MORE ABOUT CONNECTIONS. WE LOOK AT PSYCH TROPIC MEDICATION USE WITHIN THE POPULATION. HERE IT'S WORTH NOTING THAT ONLY 10% OF OUR POPULATION OF CHILDREN UNDER AGE 6 ACTUALLY USED ANY MEDICATION BY THE TIME YOU'RE ADOLESCENT, IT'S TWO-THIRDS POPULATION, SOME MEDICATION, THE MEDICATIONS USED WITHIN THAT POPULATION ARE PREDOMINANTLY STIMULANTS. ANY CHILD MAY HAVE A FORMAL DIAGNOSIS OF ADHD, NOT COMMON TO BE ON MEDICATION. THE NEXT MAJOR GROUP ARE SSRI, ATYPICAL ANTIPSYCHOTICS AND ALPHA AGONISTS. THOSE ARE THE GROUPS OF MEDICATIONS IN OUR CHILDREN IN OUR POPULATION. OF INTEREST THE CO-EXISTING REPORTED PSYCHIATRIC DIAGNOSES, IN OUR SAMPLE IS QUITE LOW. 19% HAVE A CO-EXISTING CONDITION OF ADHD, 8% ANXIETY. I THINK WHAT THIS MEANS QUITE SIMPLY AGAIN, WHAT I SAID A FEW MOMENTS AGO, MANY CHILDREN ARE TREATED WITHOUT HAVING A FORMAL DIAGNOSIS OF THESE CO-EXISTING PSYCHIATRIC DISORDERS. I THINK THAT'S AN AREA AGAIN, NEED TO BE MORE SOPHISTICATED AS WE MOVE FORWARD TRYING TO UNDERSTAND THE CO-OCCURRING CONDITIONS HERE AND THERE'S A LOT OF WORK TO BE DONE ABOUT WHETHER MEDICATIONS ARE EQUALLY EFFECTIVE IN CHILDREN WITH AUTISM WHO ARE EXHIBITING ADHD SYMPTOMS AS AN EXAMPLE, FOR ANXIETY. TO THE TREATMENTS WE HAVE FOR ANXIETY WORK AS WELL FOR CHILD WITH ASD AS THEY DO FOR CHILDREN WITHOUT ARCSD. WE SUGGEST MAYBE YES BUT ALSO EVIDENCE TO SUGGEST PERHAPS NONE. LET ME END WITH A UP L OF SLIDES SHOWING QUALITY OF LIFE. I DON'T WANT TO GO INTO TOO MUCH DETAIL, BUT TO STRESS HERE WE'RE LOOKING ATPARTICULAR MEASURE CALLED THE PEDIATRIC QUALITY OF LIFE MEASURE. THESE ARE BASICALLY IN MANY CASES PARENT REPORTS OF THEIR UNDERSTANDING OF THE CHILD'S QUALITY OF LIFE. THESE ARE PROXY INDICATORS OF QUALITY LIFE. CHILDREN WITH AUTISM COMPARED TO CHILDREN WITH OTHER CHRONIC HEALTH CONDITIONS HAVE WITH FEW EXCEPTIONS, FAR LESS GOOD CALL OF LIFE. THIS IS A FAIRLY DRAMATIC IMPACT ON QUALITY OF LIFE. MORE SO IN CERTAIN AREAS THAN OTHERS. SO LESS SO FOR EXAMPLE IN PHYSICAL HEALTH QUALITY OF LIFE BUT LOOK AT SOCIAL FUNCTIONING AND COMPARE TO CHILDREN WITH OTHER CHRONIC CONDITIONS IN GENERAL. VERY, VERY DRAMATIC DIFFERENCE HERE. BY AGE I WANTED TO STRESS CALL OF LIFE WITHIN THE POPULATION OF CHILDREN WITH AUTISM, GOES DOWN SUBSTANTIALLY AS YOU AGE WITH ALMOST NO EXCEPTION. PRETTY CONSISTENT, QUALITY OF LIFE DIMINISHES FOR YOUNG PEOPLE, IT'S AN AREA WE OUGHT TO BE MEASURING BETTER AND UNDERSTANDING WHAT ARE THE WAYS THIS HAPPENS. AND WHAT WE CAN DO TO MAKE DIFFERENCES THERE. LET ME END WITH A COUPLE OF THINGS ABOUT WHAT WE'RE TRYING TO DO WITHIN THE AUTISM TREATMENT NETWORK AND RELATED AUTISM INTERVENTION RESEARCH NETWORK AND PHYSICAL HEALTH. WE DO PROVIDE AN INITIAL EVALUATION FOR ALL CHILDREN IN OUR NETWORK. NOT ONLY CHILDREN IN OUR REGISTRY. MEDICAL INCLUDE PSYCHIATRIC CO-OCCURRING CONDITIONS CH PART REPORT, PARENT CONCERNS, CLINICIAN REVIEWS AND SOME SCREENING MEASURES. WE CAN DO BETTER AN WE'RE DOING BUT WE'RE DOING A GOOD JOB ALREADY. ABOUT AREA WE FOCUS ON IN THE NETWORK IS EXPANDING PRIMARY CARE INVOLVEMENT WITH PHYSICIANS, ONGOING CARE TREATMENT WITH AUTISM AND COLLABORATING THAT GETS BACK TO WANDERING DISCUSSION. AND WE ARE DOING QUALITY IMPROVEMENT ACTIVITIES IN THE NETWORK TRYING TO IMPROVE CONSTIPATION, SLEEP, WAIT TIME CURRENTLY WE'RE MOVING TO OTHER AREAS BECAUSE WE HAD VERY EXCITING SUCCESS IN THOSE AREAS CH I WANT TO STRESS HOW THE NETWORK IS REALLY DEALING WITH SOME ISSUES OF CO-EXISTING CONDITIONS. WE ALSO PROVIDE A LOT OF PRACTICE SUPPORT AND FAMILY TOOL KITS, I LISTED A FEW HERE. BUT WE HAVE PUBLISHED PRACTICE GUIDELINES FOR CONSTIPATION. INSOMNIA, MEDICATION USE FOR ADHD SYMPTOMS, WE'RE REALLY TRYING TO CHANGE HOW WE THINK ABOUT THESE CONDITIONS AND CLINICAL PRACTICE. WE PRODUCE TOOL KITS, I JUST SPOKE TO THE NUMBERS. WE HAD ABOUT 55,000 DOWNLOADS OF TOOL KITS FROM THE ATM THROUGH AUTISM SPEAKS WEBSITE OVER THE LAST COUPLE OF YEARS' TIME SO WE'RE DELIGHTED THOSE TOOL KITS ARE BEING USED. WHAT'S THE NEEDED RESEARCH WE MUST HAVE AT THIS POINT? I LISTED A FEW OF MY FAVORITES BUT LET ME TELL YOU, WE'D LOVE TO HAVE YOUR FAVORITES HERE BECAUSE IT WILL HELP US INFORM WHAT WE'RE DOING. WE'RE CERTAINLY THERE'S A NEED FOR SURVEILLANCE AND IDENTIFICATION OF CONDITIONS, THESE CO-MORBID CONDITIONS IN BOTH COMMUNITY AND HOSPITAL SETTINGS. WE NEED TO MOVE THE FACT THE CHILD HAS AUTISM AS PRIMARY DIAGNOSIS TO RECOGNIZING THERE ARE MANY OTHER ASPECTS THAT NEED TO BE ATTENDED. WE NEED TO INVOLVE PRIMARY CARE PROVIDERS MORE ACTIVELY IN MEDICAL CONDITIONS. THE AVERAGE PEDIATRICIAN PRACTICE SPENDS TIME DEALING WITH CONSTIPATION. WE BELIEVE THEY CAN DO THAT WITH CONSTIPATION IN CHILDREN WITH AUTISM AS WELL. WE NEED TO UNDERSTAND VARIATIONS IN RATES PSYCHIATRIC COMORBIDITY, FOR EXAMPLE, MAY REFLECT MAJOR DIFFERENCES IN THE PHENOTYPE AND UNDERLYING DISORDER. MORE SOPHISTICATED OVER TIME IF WE UNDERSTAND HOW O CATEGORIZE CHILDREN BETTER USING CHARACTERISTICS OF CO-MORBID CONDITIONS. WE NEED BASIC STUDIES IN THESE CONDITIONS AND WE NEED CAREFUL CLINICAL TRIALS AND NOVEL TREATMENTS. THANK YOU VERY MUCH. Q. WILL GIVE TOM TIME TO -- SLEEP DEPRIVATION. WE THOUGHT WE WOULD HOLD THE DISCUSSION TO THE END OF THE PANEL. SO MOVING NEXT TO TIM BUIE WHO DECIDED TO BE A FOUNDER OF ATN. TRUE EXPERT IN GI DISORDERS IN GI AND AUTISM. HE DIRECT IT IS GASTROINTESTINAL AN NUTRITIONAL SERVICES THAT THE LURIE CENTER FOR AUTISM AT MGH. TIM, WELCOME. >> THANK YOU. >> I'M GRATEFUL TO BE INVITED TO THIS AUGUST GROUP OF PEOPLE I DON'T KNOW WHO TO EXPRESS MY GRATITUDE TO. SO THANK YOU FOR HAVING ME. I AM HAPPY TO BE THERE, IT'S CAUSE DEAR TO MY HEART. I DON'T HAVE FINANCIAL INTEREST TO DISCLOSE TODAY. I WANT TO START BY SHOWING YOU TWO CHILDREN I TAKE CARE OF. I HAVE PERMISSION TO SHOW YOU THE VIDEOS. THIS IS JOANNENA. JOANNENA IS A PRETTY TYPICAL GIRL WHO COMES TO MY CLINIC AS A GASTROENTEROLOGIST SO NOT SURE SHE'LL SEE IT, SHE'S A GIRL THAT HAS EPISODES. HER PARENTS DESCRIBED HER AS HAVING MULTIPLE EPISODES A DAY, USUALLY MORE THAN 30 TIMES A DAY WHERE HER PROCESS WOULD BE DISRUPTED. THIS IS WHAT YOU SEEt WITH HER SHE STOPS WORK, TURNS AWAY, SHE CHANGES BODY POSITION, SHE POSTURES, SHE TILTS HER HEAD. AND P SHE I THINK HAD A WONDERFUL PAIR OF PARTS WHO SAID THIS IS NOT SOMETHING THAT WE THINK IS BEHAVIORAL, WE WANT HER TO HAVE A MEDICAL EVALUATION, THEY WENT TO A NEUROLOGIST AND THEY SUGGESTED THAT THIS MIGHT BE A SEIZURE. SHE HAD AN EEG AND DURING THESE EPISODES SHE HAD NO ELECTRICAL ABNORMALITIES. THEY THOUGHT ABOUT THE POSSIBILITY OF A TICK DISORDER. NOTHING REALLY SEEMED TO FIT HER STORY SO THEY SAW MARGARET BOWMAN T THE NEUROLOGIST WHO DIRECTED OUR PROGRAM AND SHE SAID I'M NOT SURE THIS IS NEUROLOGICAL, I THINK THAT YOU SHOULD GO SEE A GASTROENTEROLOGIST. I THINK IT'S HARD WHEN YOU WATCH THIS VIDEO HOW THAT MIGHT FIT. SHE WAS CORRECT AND SHE HAD THE IDEA AFTER HAVING DELL WITH MANY PATIENTS THAT WE HAVE SEEN, HERE IS A GIRL WHO NEVER TOUCHES HERSELF ON THE STOMACH, SHE DOESN'T THROW UP OR PASS GAS AND IT E NOT EVIDENT SHE HAS STOOL PROBLEMS. WHY SHOULD WE THINK ABOUT THIS BEHAVIOR AS GASTROINTESTINAL ISSUE. NEXT GIRL IS SIMILAR I'M GIVING YOU VIDEOS WHEN WE HAVE SO MANY BOYS, THE BOYS HAVE THESE BEHAVIORS AND OFTEN ARE MUCH MORE AGGRESSIVE AND MUCH MORE VIOLENT. THIS IS BECKY, AND SHE IS KICKED A HOLE IN THE WALL THAT HAD TO BE REPATCHED. THIS IS HER TYPICAL BEDTIME AT THIS POINT. SHE CAN'T LIE FLAT. SHE'S ALREADY UNCOMFORTABLE WHEN SHE IS ASKEDDED TO GO TO BED. THAT'S A GOOD HINT THERE MIGHT BE A PROBLEM. BUT SHE ALSO HAD A VARIETY OF OTHER ISSUES. SHE'S QUITE AGGRESSIVE. SHE WILL KICK AND BITE. SHE WILL ALSO BE SELF-JURIOUS. SHE BITES HERSELF H, CHRONIC WOUNDS ON OTHER ARMS, CHRONIC PICKING DISORRER. SO SHE WAS TAKEN TO THE LOCAL DOCTOR AND THEY SAID I DON'T KNOW WHAT THIS IS. THE PARENTS FELT SHE WAS IN PAIN, THE GI DOCTOR IN HER AREA WAS NOT WILLING TO DO A WORK UP BECAUSE THEY FELT SHE WAS TOO UNSAFE TO PUT THROUGH ENDOSCOPY OR OTHER TESTING. HOWEVER THEY TRIED PLAYING HER ON ANTI-ACID MEDICINE AND SHE DIDN'T DO BETTER. SO I THINK MY BIG LESSON FROM HER IS HERE IS A GIRL THEY ACTUALLY THOUGHT ABOUT THE PROBLEM AND THEY TRIED THE TREAT THE PROBLEM BUT SHE DIDN'T IMPROVE YET SHE STILL HAS THE PROBLEM. I THINK THIS IS AN IMPORTANT STEP TO GO FORE IN TERMS OF ALL THESE MEDICAL ISSUES. I TRIED TO TREAT THIS AND IT DIDN'T GET BETTER. JOANNENA HAS A CLASSIC CONDITION CALLED (INAUDIBLE) SYNDROME. A POSTURING EVENT THAT RELATED TO ACID REFLUX. IT'S DESCRIBED IN CHILDREN UNDER AGE 5, NOT DESCRIBED IN 19-YEAR-OLDS BUT YOU HAVE SEEN ONE. THIS IS HER ESOPHAGITIS. SHE HAS SEVERE ESOPHAGITIS WITH FRANK BLEEDING, CHRONIC SCARRING. SHE'S IN A GOOD DEAL OF PAIN. WE PROVED HER EPISODES WERE ACID REFLUX BY DOING A BRAVO PH PROSTUDY LOOKING AT ACID COMING UP IN THE ESOPHAGUS DURING THE TIME WE WERE WATCHING HER AND OVER THREE QUARTERS OF HER EPISODES WERE ASSOCIATED WITH TIMES THAT SHE WAS ACTIVELY REFLUXING AT THE TIME. WHICH I THINK IS A TOOL THAT'S BEEN REALLY QUITE HELPFUL FOR US EVALUATING SOME OF THESE KIDS WITH WITH UNUSUAL BEHAVIORS OR EPISODES. AS WE SORT THEM OUT. THIS IS OUR GIRL FLAILING HERSELF ON THE BED. YOU CAN SEE SHE HAS AREA ON HER FACE SHE'S CONSTANTLY PICKING, THAT WOUND NEVER HEALED FOR MORE THAN A YEAR. THESE BITE MARKS ON HER ARMS THAT NEVER HEALED SHE'S GOT LYMPHODEE MA WHICH IS POOR LYMPH FLOW BACK BECAUSE OF CONK SCARRING BECAUSE THEY'VE BEEN CHRONICALLY INJURED. THIS IS HER ESOPHAGITIS, SHE HAS A SORE LOOKING AREA AND AREA OF CHRONIC SCARRING AFTER ON STANDARD ANTI-ACID TREATMENT THE TRY TO TREAT ACID REFLUX. THIS IS HER MAXIMIZED ON ACID TREATMENT. SHE GETS HEALING OF THE WOUNDS, HELVE HER SELF-INJURY WENT AWAY COMPLETELY. INTERESTINGLY SHE'S IN A RESIDENTIAL PROGRAM IN NEW HAMPSHIRE, WHEN SHE HAS SOMETHING GO WRONG BEHAVIOR GOES WRONG, SHE'S OUT OF WHACK WHEN SHE DEVELOPS SELF-INJURY BECAUSE IT'S UNDER CONTROL ENTIRELY WHEN HER MEDICAL ISSUES ARE MANAGED ADEQUATELY. DR. PERRIN COVERED SOME OF THE TOPICS IN TERMS OF HOW OFTEN THESE PROBLEMS HAPPEN. I JUST WANT TO HIGHLIGHT A COUPLE OF THEM BECAUSE AS HE SAID, THE FREQUENCY REPORTED IN LITERATURE IS AS LOW AS 9% AND HIGH AS OVER 70%. MOST STUDIES THAT SHOW LOW PREVALENCE OF GASTROINTESTINAL ISSUES ARE RETROSPECTIVE STUDIES WHERE THE CHART REVIEW MAY NOT HAVE CAPTURED THE‡— ISTORICAL INFORMATION. THE MAJORITY OF THE MORE RECENT STUDIES THAT HAVE SHOWN HIGH FREQUENCYIES OF GASTROINTESTINAL ISSUES IN AUTISM HAVE BEEN STUDIES TRYING TO CAPTURE THE INFORMATION AND ASKING MORE QUESTIONS ABOUT GASTROINTESTINAL PROBLEMS, PERHAPS THE BEST STUDY DR. PERRIN REFERENCED IS DR. MCDERMOT'S PAPER WHERE SHE HAD THAT COMPARISON GROUP OF PATIENTS WHO HAD OTHER DEVELOPMENTAL DISORDERS AND CHILDREN WITH TYPICAL DEVELOPMENT TO COMPARE TO AND WHAT SHE FOUND WAS CERTAINLY IN CHILDREN WITH AUTISM, THERE WAS A MUCH HIGHER FREQUENCY OF GASTROINTESTINAL ISSUE COMPARED TO THOSE OTHER POPULATIONS THAT SHE EVALUATED. WE LOOKED AT THIS IN A DATABASE, THE AGREE DATABASE WITH THE VANDERBILT GROUP AND IN THAT STUDY WITH A VERY POOR QUESTIONNAIRE SEEKING GASTROINTESTINAL COMPLAINTS WE FOUND 43% OF THE KIDS WITH AUTISM HAD ISSUES COMPARED TO UNAFFECTED SIBLINGS. MORE RESUBPOENALY NANCY MINUTE SHOE'S GROUP PITTSBURGH REPORTED 61%. YOU SAW THE ATN DATA THAT REPORTS WELL OVER 50% OF THE CHILDREN WITH ISSUES. SO THERE ARE VERY FEW NEGATIVE PAPERS THAT SUGGESTION THE ISSUE S IN -- GASTROINTESTINAL ISSUES ARE LESS FREQUENT THAN KIDS WHO ARE NOT ON THE SPECTRUM, THEY USUALLY HAVE A CRITICAL PROBLEM HOW THEIR ANALYSIS BUT DONE. ONE IMPORTANT PAPERS I THINK THAT CAME OUT IN THE LAST COUPLE OF YEARS WAS A PAPER FROM USC BY PHIL AND HIS GROUP. ONE THING I THINK IS REALLY AN IMPORTANT HIGHLIGHT FOR THEM IS THEY FOUND THE GICS PROBLEMS WERE COMMON. THEY ALSO FOUND THE PARENTAL ON SEARVATIONS OR -- OBSERVATIONS OR CONCERNS WERE USUALLY VERY GOOD. WHEN THE PARENT WAS CONCERNED THERE WAS A PROBLEM, THE PROVIDER FOUND A PROBLEM. AND THAT WAS I THINK EXTREMELY HELPFUL BUT WHAT HE SAID WAS HIS QUESTIONNAIRE, THIS 25% OF KIDS WITH CHRONIC GASTROINTESTINAL SYMPTOMS. SO YOU CAN'T SIMPLY RELY ON A QUESTIONNAIRE. YOU HAVE TO HAVE GOOD PROVIDERS WHO ARE THINKING ABOUT THE PROBLEM REALLY LOOKING AT THE PROBLEMS THAT WE THINK ABOUT OR WE WILL CONTINUE TO MISS CHILDREN BECAUSE WE'RE NOT PUTTING THEIR ISSUES AND THEIR PRESENTATION WHICH MAYBE DIFFERENT INTO THE PROPER PERSPECTIVE. KNOW ANYTHING ABOUT PARTICULAR CONDITIONS WHICH ARE GASTROINTESTINAL BASED. WE STILL HAVE A LOT TO LEARN HERE, THESE ARE VERY SMALL STUDIES DONE, LOU CORELLI REPORT AD FOOD ALLERGY PREFERENCE IN A THIRD OF THE CHILDREN TESTED DID NOT HAVE PRECEDING SYMPTOMS THAT SUGGESTED THEY SHOULD HAVE ALLERGY TESTING. DR. HORVATH IN THE BALTIMORE AREA FOUND A FAMILY REPORT THAT ABOUT 50% OF KIDS HAD SYMPTOMS THAT WERE SUGGESTIVE OF FOOD SENSITIVITY OR ALLERGY. THAT WAS PARENTAL REPORT. WE KNOW THAT THE EXTENSION OF THAT IS THAT PARENTS THEN WILL LOOK TO DIETS AND LOOK TO SOLUTIONS TO SEE IF THERE ARE IMPROVEMENTS AND SOME OF THE STUDIES SAY ABOUT 40% OF CHILDREN ON THE AUTISM SPECTRUM WILL BE TRIED ON SOME TYPE OF DIETARY RESTRICTION GLUE TEN FREE DIET WITH MILK AN WHEAT RESTRICTION ARE THE MOST COMMON BUT THERE ARE MANY OTHE. THERE HAVE BEEN A PAUCITY OF INFORMATION IN THE LAST SEVERAL YEARS TO CONFIRM THIS IDEA THAT FOOD SENSITIVITIES MIGHT BE A PROBLEM. HOWEVER, (INDISCERNIBLE) IN MASS DONEIA HAS A WILL -- MASS DONEIA HAS A LARGER NUMBER OF PARABLE AND HE STILL SUPPORTS THAT A THIRD OF KIDS HE TESTED HAD EVIDENCE OF FOOD ALLERGY BY IGE TESTING SO BY WHAT WE CALL GOOD STANDARDIZED THE TESTING THERE STILL IS A PRETTY HIGH FREQUENCY OF FOOD ALLERGY ESPECIALLY WHEN WE THINK ABOUT THE FREQUENCY OF FOOD ALLERGY IN THE GENERAL PEDIATRICS COMMUNITY TO BE SOMEWHERE AROUND 5%. SO IT'S REMARKABLY HIGHER IN THIS POPULATION AS WE CAN TEST FOR IT. SENSITIVITY IS HARD TO IDENTIFY SO THERE MAYBE KIDS WHO HAVE OTHER PROBLEMS WITH FOODS THAT AREN'T AL L LEER JOY OR SILL YAK BASED BUT VERY -- ALLERGY BASED BUT ARE AFFECTS OF THOSE FOODS. ONE HOT TOPIC IN ADULT LITERATURE IS NON-SILL YAK GLUE TEN SENSITIVITY BECAUSE WE CAN'T DIGEST IT IN A NORMAL WAY OR OTHER ISSUES SO WE'RE LEARNING WE DOPE HAVE A BIG ENOUGH WINDOW TO OPEN AND LOOK AT THESE POSSIBILITIES OR TEST FOR THEM IN A PROPER WAY. DIETARY STUDIES HAVEN'T BORNE OUT A DIETARY INTERVENTION WILL WORK GLOBALLY FOR CHILDREN WITH AUTISM, A COUPLE OF STUDIES IN NORWAY, HE ALMOST COMPLETELY REPLICATED HIS EXPERIENCE WITH EIGHT OF TEN CHILDREN TOGETHER PUT ON DIETARY RESTRICTION. NOTABLY THOSE ARE CHILDREN WHO HAD MARKERS FOR GLUTIN SENSITIVITY. SO HE HAD GOOD CANDIDATE POPULATION WHO MIGHT RESPOND TO DIET BASED ON HIS MARKERS AND THEY SEEM TO GET BETTER. THEY WERE BOTH OPEN STUDIES. SO ALL PROVIDERS KNEW THEY WERE PUT ON A DIET. WHEN STUDIES ARE MORE OBSERVATIONAL, THERE'S REPORTS OF IMPROVEMENT BUT VINIAGRETTE TAKE THE OBSERVATIONAL CAPABILITY OR THE KNOWLEDGE OF WHAT'S EXPOSED OUT, THE STUDIES ïEZQ QUITE SO GOOD. SO WHEN DR. ELDER DID THE STUDY SHE DID A DOUBLE BLIND WHERE CAREGIVERS AND PROAID VIEWERS DID NOT KNOW WHETHER THE CHILDREN WERE RECEIVING CASEIN AND GLUTIN SHE COULDN'T SHOW BENEFIT OF DIE THE TEAR RESTRICTION. NOTABLY IN THE STUDY REPORTED IN ABSTRACT GROUP THEY WE WERE TRYING TO SELECT A GROUP OF KIDS WHO MIGHT BE GOOD CANDIDATES FOR DIETARY RESTRICTION, THEY WERE TRYING TO APPLY IT TO CHILDREN WITH AUTISM TO SEE IF THOSE KIDS WOULD BE FOR THE DIET SO ONE BIG QUESTION REMAINS COULD THERE BE A SUBGROUP OF PATIENTS WHO MIGHT RESPOND TO DIETARY RESTRICTION AND I WOULD CONTEND THERE MIGHT BE. WE'RE ACTIVELY DOING A STUDY AT MGH RIGHT NOW LOOKING AT CASEIN FREE GLUTIN FREE DATA IN CHILDREN WITH CHRONIC GASTROINTESTINAL SYMPTOMS SO THE SUBGROUP OF KIDS MAYBE BETTER CANDIDATES TO RESPOND ACTIVELY ENROLLING BUTTHERE MAYBE AN EXPLANATION FOR WHY THE STUDIES SO FAR VAN SHOWN A BENEFIT. THERE ARE ISSUES BEYOND ALLERGY THAT DEAL WITH RESTRICTIONS OR CHANGES. HE HAS SHOWN IN SEVERAL PAPERS THAT LACTOSE INTOLERANCE IS EXTREMELY COMMON IN PATIENTS WE EVALUATE. HIS RECENT PAPER WAS IN AUTISM IN 2010 AND WHAT IT SHOWED WAS THAT THE FREQUENCY OF LACTOSE INTOLERANCE IN CHILDREN UNDERGOING ENDOSCOPY, SO WE HAD SIGNIFICANT GI SYMPTOMS, THE FREQUENCY OF LACTOSE INTOLERANCE WAS OVER 60% WHICH IS OUTRAGEOUSLY HIGH. IT WAS HIGH IN NON-AFFECTED CHILDREN AS WELL. IT REPRESENTS THE GROUP OF KIDS BAD ENOUGH TO UNDERSTOOD GO ENDOSCOPY BUT COULD BE A CAUSE OF SIMILAR SYMPTOMS AND IS AN EASY TREATABLE IMPACT IN CHILDREN WHO ARE ON MILK CONTAINING PRODUCTS TO ALTER WHAT WE DO FOR THEM AND SOME WILL BE SYMPTOMATICALLY BETTER IF WE DO. PART OF THE REASON GI ISSUES HAVE BEEN SORT OF QUESTION IS THERE WAS CONTROVERSY FROM THE BEGINNING. WHEN RANDY TALKED ABOUT THE IDEA THAT VACCINE INJURY MIGHT BE A CAUSE OF THE GI SYMPTOMS AN AUTISM, IT REALLY ALMOST SET BACK THE GI COMMUNITY TO SOME EXTENT THEY WERE AFRAID TO GET INVOLVEDDED LOOKING AT CAUSATION AND THE LIKE BUT WE HAVE NEEDED TO GO BACK TO SOME OF THAT ORIGINAL WORK HE DID AND OTHERS TO SAY MANY PATIENTS HE EVALUATED DID HAVE INFLAMMATORY CHANGE IN THE BOWEL, COLITIS, OTHER ISSUES THAT MIGHT BE RESPONSIVE TO TREATMENT. IF WE TAKE OUT THE IDEA THAT THERE IS SOME OTHER CAUSE, WE STILL NEED TO LOOK AT THIS COMMUNITY OF INDIVIDUALS HE SAW AND TREAT IT AND THAT THERE MAYBE A GROUP OF PATIENTS WHO GOT INFLAMMATORY ISSUES IN THE BOWEL. MORE RECENTLY FOLLOWING FOLLOWING THAT IDEA WALKER PUBLISHED AN IDEA IN SOME -- COMPARED TO OTHER NON-INFLAMED INDIVIDUALS WHO UNDERGO ENDOSCOPY PI SO THERE'S WORK AT THE GUT IMMUNOLOGY LEVEL AND GUT GENE EXPRESSION LEVEL AND TRYING TO CHARACTERIZE HOW MANY OF THE CHILDREN HAVE INFLAMMATION IN THE GUT THAT MAY NEED TREATMENT. I DON'T WANT TO LOSE THAT FOR GETTING TANGLED IN DEBATE. ONE REASON WE WANT TO LEAVE THE DEBATE IS WE WANT TO GET AS BEST INFORMATION OUT AS WE COULD BASED ON THE POOL OF DATA SO WE DID A CONSENSUS GATHERING OF GASTROENTEROLOGISTS AN NEUROLOGISTS, OTHER INVOLVED EXPERTS IN THE FIELD, THEN WE WERE ABLE TO PUTTING TO TWO CONSENSUS PAPERS, ONE WAS WRITTEN BY THE GI MEMBERS OF THAT CONSENSUS GROUP AND THE OTHER WAS WRITTEN BY THE ENTIRE GROUP. IT TRIED TO GET THE LITERATURE AT THE TIME OF GASTROINTESTINAL PROBLEMS IN AUTISM AND WE WERE ABLE TO COME TO A CONSENSUS ABOUT WHAT WE SHOULD DO GOING FORWARD AS PEDIATRICIANS WITH THE IMMUNITY. SO I WANT TO TOUCH ON TWO OR THREE KEY STATEMENTS THAT WE PUT OUT IN THIS STATEMENT. ONE WAS THAT CHILDREN WITH AUTISM WHO PRESENT WITH GI ISSUES DESERVE TO BE WORKED UP. I KNOW THAT SOUNDS SIMPLE BUT IT DOESN'T HAPPEN IN A LOT OF COMMUNITIES, IT'S BECAUSE OF THIS PERCEPTION THAT KIDS WITH AUTISM HAVE THESE PROBLEMS WE'RE NOT GOING TO PURSUE THAT. THIS IS THEIR BILL OF RIGHTS. THEY NEED TO TAKE THE PAPER TO THEIR DOCTORS TO SAY HERE IS THE ADVICE. YOU DESERVE A WORK UP. AND I THINK THAT'S A VALUE. I THINK THE IDEA THAT AT LEAST GASTROINTESTINAL CONDITIONS REPORTED TO BE COMMON IN PEDIATRICS WILL ALSO BE SEEN IN INDIVIDUALS WITH ASD. I DON'T NEED TO TELL YOU THESE PROBLEMS ARE MORE COMMON THE ASD BECAUSE THEY'RE COMMON IN PEDIATRICS. AS DR. PERRIN TALKED ABOUT THE PEDIATRICIAN IS TAKING CAR OF CONSTIPATION QUITE FREQUENTLY IN THE GENERAL OFFICES. HE NEEDS TO EXPECT THAT HE'S GOING TO BE TAKING CARE OF INDIVIDUALS WITH AUTISM WITH THOSE SAME PROBLEMS. SO IT REALLY, WE NEED TO BE LOOKING. WE DON'T THINK THAT WE HAVE DATA YET TO SUPPORT A SPECIFIC ENTITY IN AUTISM THAT IS GI-RELATED. I THINK THE MOST IMPORTANT STATEMENT THAT I WANT TO HIGHLIGHT IS OUR STATEMENT 6 WHICH IS INDIVIDUALS WITH ASD AND GI SYMPTOMS ARE RISK FOR PROBLEM BEHAVIORS. BECAUSE I THINK THE BIGGEST MYTH THAT HAPPENS IN THE PEDIATRIC OFFICE IS IF THE CHILD DOESN'T COME IN AND SAY I HAVE CONSTIPATION, DOCTOR, OR I HAVE HEART BURN, DOCTOR, THEN THEY MAY NOT THINK ABOUT THAT AS AN UNDERLYING MEDICAL CONDITION. MANY CHILDN WILL PRESENT SPECIFICALLY WITH BEHAVIORS. SOME GIVE GOOD FORTUNE, THEY WALK INTO THE FREEZER, PICK UP AN ICE CUBE AND PUT IT ON THEIR CHEST. OR TAP ON THEIR CHEST AS IF SAYING HELP ME HERE. I DON'T ALL GET THAT HELP. SO I NEED TO LOOK AT THESE PROBLEM BEHAVIORS AS ADDITIONAL SYMPTOMS THAT COULD IMPACT HOW I DO A WORKUP. I'M ALMOST DONE, ITY THERE ARE SOME INTERESTING UNSETTLED QUESTIONS. COULD GASTROINTESTINAL ISSUES HAVE A CONTRIBUTION TO THE CAUSATION OF AUTISM. I THINK THAT'S A VERY INTERESTING TOPIC AN WHERE A LOT OF RESEARCH IS GOING IS LOOKING AT WHETHER ENVIRONMENTAL FACTORS OR NUTRITIONAL FACTORS WILL AFFECT THE INTESTINAL MICROBIOME AND THESE BY PRODUCTS OF THEBIOME MIGHT BE HAVING NEUROTRANSMISSION EFFECTS AN AFFECTING HOW THE BRAIN WORKS. THIS IS REALLY WHERE OUR WORK IS GOING TO GO IN THE NEXT FIVE, TEN YEARS I THINK. AND THE IDEA THAT INFLAMMATION MIGHT BE A TRIGGER FOR BRAIN EFFECT MAYBE THAT INFLAMMATION ANYWHERE IN THE BODY COULD BE A TRIGGER FOR BRAIN EFFECTS. THESE DON'T HAVE TO BE BRAIN BASEDjla ISSUES CERTAINLY GERMANE GASTROINTESTINAL PROBLEMS. I TOUCHED ON BACTERIAL FLORA -- THERE'S AMAZING INFORMATION IN THE LAST MONTH OR TWO ABOUT THE IN UNAFFECTED PATIENTS. WE NEED TO LOOK TO, THAT'S ANOTHER CONFERENCE I WOULD LOVE TO GIVE YOU SOMETIME IF YOU WOULD WELCOME US BACK. THERE'S GENE LINKS, I THINK THE IDEA THAT THERE MAYBE BIOMARKERS SUCH AS THE MET GENE POLYMORPHISM THAT WAS STRONGLY ASSOCIATED WITH FAST STROW INTESTINAL SYMPTOMS IN CHILDREN WHO HAD AUTISM MAY MEAN AN UNDERPINNING OF GENE ISSUES THAT MAYBE TRIGGERED REMAINS AN IMPORTANT QUESTION. BUT THERE ARE PROBABLY COMBINATION ISSUES OF BOTH GENE RISK AND ENVIRONMENTAL FACTORS. WE FOUND DIGESTION ISSUES WERE BEYOND LACTOSE INTOLERANCE. THIS IS A PAPER BY BRETT WILLIAMS IN PLOS WHERE HE TALKED ROPINGS OF BOWEL FLORA AS WELL. BUT WE FOUND A VARIETY OF CARBOHYDRATE TIE JESTERS NOT NORMAL IN INTESTINAL BIOPSIES WHEN WE LOOKED AT THEM. THAT COULD BE AN UNDERPINNING THAT COULD CAUSE BOWEL FLOOR DISRUPTION. AND I CAN MENTION TWO PAPERS TALKED ABOUT, DISRUPTION OF THE BOWEL FLORA TO SPECIFIC BUGS. AND THE IDEA THAT THESE ARE BAD GUY BUGS APPROXIMATE WE MUST KILL THEM IS NOT NECESSARILY THE NEXT STEP WE NEED TO PURSUE. WE NEED TO UNDERSTAND WHY BOWEL FLORA DROPPINGS CAUSED THESE CHANGES AND ADDRESS THOSE UNDERLYING ISSUES BEFORE WE PULL OUT ANOTHER TOOL TO ATTACK. GASTROINTESTINAL ISSUES ARE COMMON, WE NEED TO CONSIDER THEM POTENTIALLY NORIMON IN CERTAIN SETTINGS. WE NEED TO LOOK AT PROBLEM BEHAVIORS AND THINK ABOUT REFERRING THOSE CHILDREN ON TO SPECIALISTS WHO SEE CHILDREN AND HAVE SOME COMFORT WITH THAT. LASTLY, I THINK THAT BEHAVIORAL COMPONENT IN PARTICULAR, NEEDS TO BE CONSIDERED BY PEDIATRICIAN. THOSE BEHAVIORS PROBABLY HAVE A MEDICAL UNDERPINNING. THERE ARE TIMES WHEN WE CAN'T MANAGE PATIENTS BECAUSE THEY ARE AGGRESSIVE OR BECAUSE THEY'RE A DANGER TO THEMSELVES. AND UNDER THAT SETTING I IT'S TOTALLY REASONABLE THAT THEY MAY REQUIRE PSYCHOPHARMACOLOGICAL TREATMENT OR HOSPITALIZATION TO CONTROL THOSE BEHAVIORS. HOWEVER, AS WE THINK ABOUT THESE PATIENTS, WE CAN'T LEAVE THE IDEA THAT SOMETHING TRIGGERED THOSE THINGS OFF THAT MAY HAVE A MEDICAL UNDERPINNING. IF I CAN ASK YOU KEEP THAT IN MIND AND SPREAD THAT WORD TO OTHER PROVIDERS. IT'S THE BEST THING THAT I CAN DO AS A CAREGIVER. THAT'S ONE OF THE MESSAGES WE DID SAY IN OUR CONSENSUS PAPER PART OF THE ISSUE IS THAT WE WHO DO THIS A LOT ARE PRETTY GOOD AT WHAT WE DO. WE KNOW WHAT WE THINK AND WE'RE GOOD. THERE ARE A FEW OF US. THE BEST WAY WE CAN DO BETTER IS TO EDUCATE OTHER PROVIDERS TO DO AS WELL AS WE DO. I THINK THAT WE ARE INTERESTED IN THE CAUSE, WE'RE INTERESTED IN GETTING TO THAT. BUT ONE MAJOR SUPPORTS THAT NEEDS TO COME GOING FORWARD IS HOW TO EDUCATE OTHER COMMUNITIES HOW TO MANAGE THESE PATIENTS. WE JUST GAVE A TALK FOR THE ADULT GI NURSES HOW TO DO ENDOSCOPY ON DIFFICULT PATIENTS. THESE THINGS NEED TO HAPPEN SO THAT PATIENTS CAN BE TAKEN CARE OF SAFELY BECAUSE THEN THEY'LL BE TAKEN CARE OF. I THANK YOU FOR YOUR TIME. [APPLAUSE] >> WE THANK YOU FOR YOURS. I KNOW -- THERE YOU ARE, GOOD. WELCOME. SHE IS IN THE MEDICAL DIRECTOR BEHAVIORAL INSTITUTE IN KRIEGE INSTITUTE IN BALLET NO. SHE'LL SPEAK ABOUT CATATONIA. AN AREA SHE HAS GREAT EXPERTISE, INCLUDING JURIOUSBEHAVIORS. CATATONIA LEE WACHTEL. >> DIDN'T SCHEDULE A BREAK BECAUSE WE HAD SO MANY PRESENTATIONS SO IF ANYONE FEELS THE NEED, JUST SLIP OUT REALLY QUICK AND COME BACK. NOT UNTIL AFTER THE MEETING. >> I'M GOING TO BE DIFFERENT AND STAND HERE. I DIDN'T REALIZE THERE WAS A SEAT AT THE BIG TABLE BUT THIS WORKS BETTER BECAUSE I HAVE VIDEOS AT THE END TO CLOSE THIS PROGRAM FOR AN SCROLL THROUGH TO FIND. SO HOPEFULLY IT'S OKAY I'M HERE AT THE FRONT OF THE ROOM. SO I'M THANKFUL FOR HAVING BEEN INVITED TODAY TO SPEAK WITH YOU ABOUT CATATONIA AN AUTISM WHICH IS A TOPIC THAT I HAVE BEEN INTIMATELY INVOLVED WITH OVER THE PAST SEVERAL YEARS. I THINK IT'S OF GREAT IMPORTANCE TO THE AUTISM COMMUNITY GIVEN RELATIVELY LARGE NUMBER OF PATIENTS AFFLICTED WITH THIS CONDITION AND THE SEVERE IMPACT THAT CATATONIA CAN HAVE ON OUR PATIENTS WITH AUTISM AND THEIR FAMILIES. SIMILAR TO PREVIOUS PRESENTERS I DON'T HAVE CONFLICTS OF INTEREST OR FINANCIAL DISCLOSURES TO RELATE TO YOU. THE OBJECTIVES OF THIS PRESENTATION ARE FOUR, INITIALLY I WOULD LIKE TO DISCUSS CONCOMITANCE OF CATATONIA AND AUTISM SPECTRUM DISORDERS SPECIFICALLY AND STEP BACK AN EXPLAIN WHAT IS CATATONIA. I THINK FOR MANY PEOPLE THAT'S AN ESOTERIC TERM NOT COMMONLY RECOGNIZED. THEN GO THROUGH THE RANGE OF SYMPTOMS AND TALK ABOUT THE DIFFERENT FACES OF CATATONIA INCLUDING WHAT I CALL THE TWO SIDES TO THE CATATONIA COIN BOTH PSYCHOMOTOR RETARDED AND PSYCHOMOTOR AGITATEDDED SYMPTOMS THAT WE SEE FREAKILY IN THIS PATIENT POP -- FREQUENTLY IN THIS PATIENT POPULATION. ONE GOAL OF THE PRESENTATION TODAY IS TO GAIN FURTHER SUPPORT FOR ONGOING RESEARCH IN THIS TOPIC OF STUDY. SO CATATONIA AND AUTISM, WHY IS THAT IN AUTISM SPECTRUM DISORDERS OF IMPORTANCE OR INTEREST? INTERESTINGLY IN THE PAST 13 YEARS THERE HAVE BEEN A GROWING NUMBER OF CASE REPORTS OF INDIVIDUALS BOTH CHILDREN PEOPLE IN THE BACK CAN'T HERE? IS THIS BETTER? AWESOME. WHY BOTHER TALKING ABOUT CATATONIA AN AUTISM SPECTRUM DISORDERS? IN THE PAST 13 OR SO YEARS THERE'S A GROWING NUMBER OF CASE REPORTS OF INDIVIDUALS BOTH CHILDREN ADOLESCENT AND ADULTS WHO HAVE BEEN DIAGNOSED WITH CATATONIA IN THE CONTEXT OF AUTISM SPECTRUM DISORDER. IN ADDITION THERE HAVE BEEN THREE LARGE INTERNATIONAL POPULATION BASED STUDIES LOOKING AT THE INCIDENCE OF CATATONIA I INDIVIDUALS WITH AUTISM SPECTRUM DISORRERS, FIRST FROM THE UK BY (INDISCERNIBLE) LOOKING AT OVER 500 CHILDREN AND ADULTS WITH AUTISM, FINDING THAT A LARGE PERCENTAGE OF THOSE PATIENTS 17% MET CRITERIA FOR CLASSIC CATATONIA RATING SCALES. WE DEVELOP THEIR OWN ADDITIONAL CATATONIA CRITERIA, WE WILL TALK ABOUT LATER WRITE RELEVANTTOR INDIVIDUALS WITH AUTISM. FIVE YEARS LATER ANOTHER STUDY OUT OF SWEDEN PLACING THE INCIDENCE OF CATATONIA AT 12% A LITTLE BIT LESS, INTERESTINGLY YOU'LL PAY ATTENTION TO THE NUMBERS IN THE PARENTHESES OF CONCOMITANT ISSUES THESE PATIENTS HAD INCLUDING HALF WITH SELF-JURIOUS BEHAVIOR, -- JURORROUS -- INJURIOUS BEHAVIOR AND TICKS VERY COMMON IN THESE PATIENTS. LAST YEAR IN THE UNITED STATES FROM THE UNIVERSITY OF MICHIGAN IS A STUDY OF 101 PATIENTS UNDER AGE 18 WITH RANGE OF DIAGNOSES LISTED THERE. WITH NEARLY 18% MEETING CRITERIA FOR CATATONIA AND PAPER COMMENTS ONLY TWO PATIENTS HAVE BEEN DIAGNOSED PRIOR TO ENROLLMENT IN THE STUDY AND THAT REALLY EMPHASIZES ONE OF THE MOST IMPORTANT ELEMENTS OF CATATONIA AND AUTISM, AND THAT IS THE UNDERRECOGNITION AND THEREFORE DELAYED TREATMENT OF THESE PATIENTS. SO IT WAS INTERESTING CATATONIA AND AUTISM IS A NEW THING LIKE -- IF YOU LOCK BACK TO THE HISTORY OF MEDICINE, I ALWAYS FIND INFORMATIVE BECAUSE IT GIVES A LOT OF LESSONS THAT WE OTHERWISE WOULDN'T HAVE BECOME AWARE OF. YOU CAN FIND CAT TONIC SYMPTOMS AN AUTISTIC SYMPTOMS IN PEDIATRIC POPULATIONS WERE NOTED AS EARLY AS 1920s. THIS IS A QUOTE FROM 1960s AMONG PEDIATRICWoy NEUROLOGISTS IN RUSSIA CATATONIA IN AUTISTIC PATIENTS. HIGH HEIGHTED POSTURING FREEZING ING, FOOD REFUSEAL AS ANYTHINGTISM INACCESSSIVE AGITATED, TENDENCY TO SELF-INJURY, BEATING HEAD AGAINST THE WALLER BED AND OTHER INJURIOUS BEHAVIORS. THIS IS IMPORTANT TOWARD THE END OF THE TALK AND TALK ABOUT AGITATED INJURY A ALONG THE SPECTRUM OF CAT TONIC BEHAVIORS. SO WHEN I TALK CATATONIA THEY'RE LIKE WHAT IS THAT? WE HAVEN'T HEARD ABOUT THAT. I WOULD LIKE TO STEP BACK AND GIVE HISTORY OF CATATONIA AND SOME OF THE BASIC SYMPTOMS FROM GENERAL PSYCHIATRIC AND NEUROLOGICAL LITERATURE. THERE'S REFERENCES TO CATATONIA OR WHAT WAS INITIALLY CONGEALING AS FAR BACK AS BRITISH LITERATURE IN THE 1500s. BUT IT WAS GIVEN THAT NAME, THE TERM WAS COINED IN 1874 BY GERMAN1)– PSYCHIATRIST CARL COW BELL WHOSE CONTRIBUTION WAS TO TAKE DISCRETE MOTOR VOCAL AND AFFECTIVE SYMPTOMS AND PUT THEM TOGETHER IN ONE DISEASE ENTITY. I HIGHLIGHT THOSE THREE GROUP BECAUSE THAT'S WHAT WE'RE LOOKING AT TODAY WITH OUR PATIENTS. SO COMMON CAT TONIC SYMPTOMS. THERE ARE CATATONIA RATING SCALES YOU CAN FIND IN THE LITERATURE. GOING OVER THE COMMON SYMPTOMS IS PROBABLY MORE USEFUL THAN REVIEWING SOME OF THE UNUSUAL GERMAN TERMS THAT ARE NOT READILY ACCESSIBLE. THESE ARE SOME OF THE SYMPTOMS THAT WE SEE. SO PATIENTS WHO ARE IMMOBILE, RIGID WHO DO NOT MOVE, ASSUME UNUSUAL POSTURES, LIKE A TREE, TWISTED, UPSIDE DOWN, LIMBS ASKEW, WHEN YOU MOVE THEM THEIR BODY FEELS LIKE LEAD AND IT CANNOT BE MOVED. PATIENTS WHO ARE SUPERROUS, MUTE OR MARKED DECREASE IN PREVIOUSLY ACQUIRED COMMUNICATIVE SKILLS CH PATIENTS ENGAGE IN ECHO PHENOMENA OR ECHO PRAXIA THE LATTER BEING REPETITION OF MOTHER PATTERN COMPARED TO WORDS PHRASES. GRIMACING, GROUPING, PHYSICAL EXCITEMENT AND COMBATIVE ELEMENTS. MANY WHEN THEY THINK CATIA AND HOW IT -- CATATONIA HOW IT'S FOR TRAYED IN THE MEDIA, THINK OF A PATIENT SITTING LIKE A BUTCH ON A LOG. YOU GET THAT IMAGE FROM ONE OF THESE CLASSIC TEXTBOOKS, CATATONIA TEXTBOOK HERE, MAX AND TAYLOR HAS A SCULPTURE THERE'S NOT A LOT OF MOVEMENT GOING ON THERE. BOTH ARE EXCELLENT RESOURCES, THE GENERAL CATATONIA TEXTBOOK AND AUTISM SPECTRUM DISORDERS EDITED BY MY COLLEAGUE FROM UNIVERSITY OF MISSISSIPPI, THE TOP WAS DOWNLOADABLE ON THE INTERNET. BUT ANYWAY, SO WE USUALLY THINK OF THE PATIENT WHO IS CAT TONIC NOT MOVING STUPOROUS AN STUCK IN POSITION. BUT WHAT'S PERFORM TO RECOGNIZE IS THERE'S A WHOLE 'NOTHER FLIP SIDE TO CATATONIA. PATIENT WHOSE ARE HIGHLY PHYSICALLY AT A TIMED ENGAGING IN -- AGITATED, IN STEREOTYPIC BEHAVIORS FOR NO APPARENT REASON AND GET THEMSELVES IN HOT WATER FROM THE REPETITIVE BEHAVIORS AS YOU'LL SEE IN THE PICTURES. NEGATIVISM. WE TALKED ABOUT GI ISSUES AND ONE THING WE SEE IN PATIENTS WITH CATATONIA IN TERMS OF NEGATIVISM IS FOOD REFUSEAL. WHICH MANY TIMES IS CHALKED UP AND WORKED UP AS A G ISSUE. THERE MUST BE A REASON THEY'RE NOT EATING BUT IT'S EASY TO RECOGNIZE THAT PATIENTS WHO ARE CAT TONIC OFTENTIMES DO NOT EAT. CONOT DRINK. MAY ALSO BECOME SO NEGATIVISTIC THAT THEY CANNOT VOID WITHOUT MEDICAL ASSISTANCE. AND LESS RARE BUT CERTAINLY SEEN THIS AUTONOMIC INSTABILITY, IT CAN TURN MALIGNANT OR LETHAL WHERE YOU HAVE THERMO REGULATORY AND CARDIOVASCULAR INSTABILITY AND THAT CONDITION UNTREATED HAS ANYWHERE FROM 10 TO 20% FATALITY RATE. SO CATATONIA HAS A CHALLENGING HISTORY. I THINK IT'S NOW COMING BACK. WITH DSM-V, THE FIRST VENUE CATATONIA IS GIVEN ITS OWN DIAGNOSIS AND RECOGNIZED WHERE YOU CAN DIAGNOSE IT AS A SEPARATE SYNDROME INDEPENDENT OF A MODE DISORDER, SCHIZOPHRENIA OR GENERAL MEDICAL CONDITION. UNFORTUNATELY SHORTLY AFTER CARL COWBAUM CAME TOP THE SCENE, CATATONIA WAS STOLEN OR SUBSUMED TO THE SCHIZOPHRENIA DIAGNOSIS, LEADING TO DECADES OF ERROR, IT WAS ASSUMED IF YOU HAD CAT TONIC SYMPTOMS YOU MUST BE SCHIZOPHRENIC. IF YOU'RE NOT SCHIZOPHRENIC YOU CANNOT HAVE CATATONIA. SO MANY OF THESE PATIENTS WERE NOT APPROPRIATELY RECOGNIZED. AND THAT'S AN ISSUE THAT CONTINUES TODAY BUT IS GETTING BETTER. AS WE NOW KNOW THAT CATATONIA CAN BE FOUND WITH FOUR GENERAL RUBRICS OF ETIOLOGIES. MEDICAL CONCERNS, NEUROLOGICAL ETIOLOGIES, PSYCHIATRIC AND DRUG RELATED. SO CATATONIA IS EXCESSIVELY DOCUMENTED. I TOOK OUT A LOT OF HISTORICAL PHOTOS BECAUSE WHEN I LEARNED THIS WOULD BE PODCASTED I WASN'T SURE IF THE FAMILIES WOULD CONCEPT THEIR IMAGES BE USED. ACTUALLY EVERYBODY CONCEPTED SO IT WAS NOT OVERLY NECESSARY BUT I KEPT THE HISTORICAL IMAGES TO SHOW YOU A RANGE OF HISTORICAL IMAGES FROM FRANCE, GERMANY AND UNITED STATES SHOWING A RANGE OF CAT TONIC PRESENTATIONS PRESERVED AS SKETCHES OR OLD PHOTOS. I DRAW YOUR ATTENTION TO THESE IMAGES BECAUSE WE SEE THE SAME IN OUR PATIENTS WITH AUTISM TODAY PRESENTING WITH CATATONIA, POSTURING, UNUSUAL MANNERISM, STUPOR, UNRESPONSIVENESS, MOUTH MOVEMENTS, GRIMACING, AND BEHAVIORS, ENGAGENING REPETITIVE HEAD BANGING AND THE GUY AT THE BOTTOM WHOSE SELF-INJURY PROGRESSED SO SEVERERY THAT HE EFFECTIVELY MUTILATED HIS ENTIRE FACE. SO HISTORY RETURNS IN TODAY AUTISM, FIRST PATIENT WHO IS AUTISTIC AND PROFOUNDLY CAT TONIC WAS THIS YOUNG LADY AT THE TOP, IT'S SERENDIPITOUS, MAYBE TO MAKE IT VERY CLEAR, WHAT'S GOING ON AS A CLEAR MIRROR IMAGE OF THIS CAT TONIC PATIENT FROM EARLY 1900s GERMANY. SO YOU SEE THE POSTURING OF LIMBS ARMS LEGS, IF YOU TRY TO MOVE THEM YOU WOULD NOT BE ABLE TO, IT WOULD BE LIKE TRYING TO MOVE A STEEL BAR. YOU SEE POSTURING OF HANDS, YOU SEE THIS PATIENT WITH PILLOW UNDER NECK WHICH IS CLASSIC CAT TONIC PSYCHOLOGICAL PILLOW WHERE THEY KEEP THEIR UPPER BODY AND HEAD UP IF THERE WAS A PILLOW LIKE IF YOU WERE DOING AN ABOUT EXERCISE BUT YOU CAN'T MAINTAIN IT MORE THAN A COUPLE OF SECONDS SO MY PATIENT HAS THE SAME, THOUGH SHE'S WEARINGING A HELMET BECAUSE THEY'RE -- YOU SEE THE FAMOUS OFFICER AND A PATIENT FROM 1907 GERMANY. AND ONE OF THE YOUNGSTERS IN 2011. SO WHY AM I BOTHERING TO TALK ABOUT THIS AND WHY AM I HOPING TO GATHER SUPPORT AND SPREAD THIS KNOWLEDGE? BASICALLY BECAUSE OF THE DIRECT SEVERE IMPACT THAT THIS CONDITION HAS ON MANY INDIVIDUALS WITH AUTISM. WHERE SYMPTOMS STRIKE AT CORE OF THE PATIENTS' FUNCTIONING. SO U WHERE SEE PICTURES AT THE BOTTOM, FIRST I WANT TO GO OVER SOME OF THE BASIC THINGS THAT WE SEE IN THESE PATIENTS AND WHY PATIENTS WITH AUTISM WHO PRESENT CAT TONIC MAY NOT BE ABLE TO MOVE AT ALL. THEY MAYBE LIKE MY PATIENT LISTED AND DEPOSITED ON TO MY UNIT. THESE PATIENTS STOP EATING, THEY BECOME DEHYDRATED AND SIGNIFICANTLY MALL NOURISHED, SOME UNABLE TO VOID. THEY DOLL AUTONOMIC AND REGULA DEVELOP SEVERE INSTABILITY AND SEVERE TISSUE DAMAGE FROM REPETITIVE SELF-INJURY SO VINIAGRETTE EAR IN THE TRENCHES ADMITTING AND WORKING WITH THE PATIENTS BECAUSE THESE PATIENTS WILL LAND YOU IN A LOT OF HOT WATER AND OFTENTIMES TRANSFERRED OFF OF MY BEHAVIORAL UNIT TO A MORE CRITICAL MEDICAL CARE SETTING. YOU SEE A RANGE OF PATIENTS THAT WE HAVE WORKED WITH AND RANGE OF SYMPTOMS. PATIENTS WHO YOU SEE POSTURING, YOU CAN'T SEE THE BRUISING THAT WELL BECAUSE THE PICTURE IS NOT SO CLEAR. YOU SEE TWO GENT MEN WITH WITH SEVERE SELF--- GENTLEMEN WITH SEVERE SELF-INJURIOUS BEHAVIOR, ACTUALLY 3 TO HEAD. THE BOWL OF SERIAL UNDER HIS HEAD WOULD BE SIGNIFICANT IN THAT HE WAS NOT EATING IT. ADDITIONAL SYMPTOMS, CATATONIA CRITERIA, I HAD ANOTHER GROUP OF PHOTOS, JUST TO DEMONSTRATE THE SEVERE SEQUELLA IN THESE PATIENTS SO YOU SEAMINGATION OF SELF-INJURY, NOT ONLY MECHANICAL RESTRAINTS BUT SELF-RESTRAINING AND SOMEBODY ELSE IS HOLDING HIM DOWN AS WELL. WE HAVE SEEN A GROWING NUMBER OF PATIENTS WHO DETACHED RETINA AND P NEEDED EMERGENCY EYE SURGERY TO MAINTAIN THEIR VISION. AND VERY SEVERE PATIENT WHO WAS SELF-INJURIOUS TO ALL PART OF HIS BODY HE DEVELOPED BLOOD IN URINE. ADDITIONAL VEXING SYMPTOMS AN SYMPTOMS THAT YOU SEE INITIALLY THAT. COME TO LIGHT IN AN OFFICE VISIT. BEFORE THINGS LOOK REALLY BAD A LOT FROM THE CATATONIA CRITERIA, WHERE IT'S EMPHASIZED MANY PATIENTS BECOME SLOW. THEY HAVE DIFFICULTY INITIATING AND COMPLETING TASKS. YOU ASK HEM THEM TO GET THEIR SHOES AND BACKPACK BY THE DOOR AND HALF HOUR LATER YOU FIND THEM STUCK IN THE MIDDLE OF THE STAIRWELL. THEY REQUIRE EXCESSIVE DEPENDENTS, PREVIOUSLY A CHILD MIGHT BE ABLE THE GET HIMSELF DRESSED, PUT ON PANTS AND SHOES AND NOW YOU FIND YOURSELF HAVING TO PROMPT HIM THROUGH EVERY SINGLE STEP WITH EVERY STEP TAKING AN EXCESSIVELY LONG PERIOD OF TIME. MANY PATIENTS BECOME PASSIVE AND SEEMINGLY AMOTIVATED. UNFORTUNATELY THIS INITIAL PRESENTATION OFTENTIMES IS CHOCKED UP TO BEHAVIOR LIKE OH, WELL, THE BEHAVIOR PROTOCOL IS NOT WORKING ANY MORE. WE HAVE TO GO BACK TO THE DRAWING BOARD AND DO ANOTHER PREFERENCE ASSESSMENT. OR THE PATIENT IS WILLFUL. MANY TIMES IN ADOLESCENCE SO I HEAR THAT, IT'S JUST AN ADOLESCENT PHASE, THEY'RE RESISTING THINGS, RESISTING DEMANDS. MANY PATIENTS ALSO GET WORKED UP FOR NEURODEGENERATIVE DISORDER WHICH WE HAVE NOT COME ACROSS OUR PATIENTS WITH WHITE MATTER DISEASE BUT DEGREE OF IMPAIRMENT THE PATIENT SHOWS CAN OFTEN LEAVE THE NEUROLOGIST DOWN THAT AVENUE. THIS IS AN ARTISTIC EXAMPLE OF A MAN WITH CATATONIA. PRIOR TO THAT HE WAS A PRETTY GOOD ARTIST, HE WAS ABOUT TEN AT THAT AGE WHEN HE DID THAT DRAWING. CERTAINLY BETTER THAN I CAN DRAW. TWO YEARS LATER YOU SEE THE MAJOR REGRESSION IN HIS ARTISTIC SKILLS. THEN YOU ALSO SEE -- THAT IS WHEN HE WAS NOT POSTURING ON THE FLOOR UNRESPONSIVE, IT WASN'T A 24 HOUR EVENT BUT YOU SEE AN EXAMPLE OF THAT AT THE BOTTOM. THIS IS ANOTHER EXAMPLE OF SPEECH AND LANGUAGE PATHOLOGIST PREPARED FOR ME RELATED TO A 20-YEAR-OLD WHO EXPERIENCED A SIGNIFICANT CAT TONIC REGRESSION AND BEFORE WE GOT TO A POINT WHERE HE WAS UNRESPONSIVE, LYING IN THE BED, VOIDING ON HIMSELF, NEEDING TO BE SPOON FED THEY NOTICE TYPES OF DETERIORATIONS SO IN APRIL THE PATIENT IS ABLE TO READ IN 23 SECONDS THIS LITTLE PARAGRAPH, NO PROBLEM. TWO MONTHS LATER IT TAKES HIM 15 MINUTES TO READ A SINGLE WORD. YOU ALSO NOTICE HE HAS DIFFICULTY FORMING THE WORD WITH HIS MOUTH, MAKING THE MOTOR ACTIVITY TO GET THE WORD OUT REQUIRES A LOT OF PROMPTING AND QUEUES IN ORDER TO READ THE SINGLE WORD BUTTER. SIMILARLY, THEY LOOKED AT WRITING AND I THINK THAT PROBABLY MOST IN THE ROOM WOULD TAKE SOMEWHERE AROUND 26 SECONDS TO WRITE A SENTENCE OF THAT LINK. IS THIS PATIENT WAS CAPABLE OF DOING BEFORE CAT TONE TAIA -- CATATONIA. AFTER IT TOOK 17 MINUTES TO WRITE A SINGLE WORD WITH 50 EXCUSE AN EXTENSIVE HAND OVER HAHN PROMPTING. SO LET'S JUMP TO SELF-INJURY AS SYMPTOM OF CATATONIA. THIS IS ONE OF MY FAVORITE TOPICS GIVEN WE WORK WHO WITH MANY PATIENT WHOSE HAVE PRESENTED WITH SELF-INJURIOUS BEHAVIORS OF NO OPERANT FUNCTION. SO I WORK ON A UNIT WHERE WE DEAL WITH PATIENTS WHO DO HAVE CHALLENGING BEHAVIORS FOR ON RENT REASONS BECAUSE THEY WANT TO escape from demand, tangible interruption function, what have you. SOME PATIENTS ENGAGE IN HIGHER RATE REPETITIVE HIGH INTENSITY SELF-INJURIOUS BEHAVIOR WITH NO OPERANT FUNCTION WHATSOEVER. YOU CAN WORK UNTIL THE COWS COME HOME AND WON'T FIND ONE. THESE PATIENTS VINIAGRETTE TAKE HEM THEM OUT OF RESTRAINT AND ASK ATTENDANTS TO GO AWAY, USUALLY HIT THEMSELVES MORE TIMES IN THE HEAD THAN YOU CAN BRING YOUR HANDSGdr TO YOUR FACE. I HAVE A CHILD ON THE UNIT NOW WHO ENGAGES IN SELF-INJURIOUS WHAT I HAVE YOUR WHEN REMOVEDDED FROM RESTRAINT WITH ALL FOUR LIMBS ALTERNATING. WE CAN ONLY OBSERVE 5 TO 7 SECONDS AT TIME, PROBABLY AFTER 5, TEN MINUTES WE WOULD SUCCEED IN KNOCKING HIMSELF UNCONSCIOUS. SO INTERESTINGLY SELF-INJURY IS A SYMPTOM OF CATATONIA FOUND AS EARLY AS 1849 IN BELLS FIRST DESCRIPTION OF THE DELIRIOUS MANIA, ALONG THE LINES OF AGITATED CATATONIA. UNFORTUNATELY SELF-INJURY WITHIN CATATONIA WAS SOMETHING LARGELY IGNORED BECAUSE OF WE TALKED ABOUT ERROR WHERE -- >> LEE I APOLOGIZE FOR INTERRUPTING BUT WE'RE RUNNING OVER, CAN YOU FINISH UP FAIRLY RAPIDLY? >> YEAH. EVERYONE WENT OVER. >> WE'RE WE NEED TO GET ON SCHEDULE. >> OKAY. I'M ACTUALLY CLOSE TO THE END. I JUST SHOW MY VIDEOS. SO RIGHT SO PREVALENCE ERROR AND LATER ABSORPTION OF SELF-INJURIOUS BEHAVIOR WITHIN THE SERIES OF APPLIED BEHAVIORAL ANALYSIS BUT NOT ALL; SELF-INJURY HAS AN OPERANT FUNCTION TO IT. THIS IS INITIALLY HYPOTHESIZED IN 2010 AND PUBLISHED ON. THERE IS EXPANDING INTERNATIONAL LITERATURE ON THIS. WITH PUBLISHING AROUND THE WORLD AND SELF-INJURY AS ALTERNATE SYMPTOM OF CATATONIA WAS INCLUDED IN THE UPDATE TO THE -- COVER YOU SAW BEFORE THAT JUST CAME OUT IN JUARY. SO THIS ALL SOUNDS KIND OF BAD AND DISTURBING BUT WHAT'S REALLY NICE AND REALLY COOL ABOUT CATATONIA IS TREATMENT IS ACTUALLY INCREDIBLY SIMPLE. CATATONIA TREATMENT PARADIGMS THAT HAVE BEEN WELL KNOWN AND HAVE BEEN PUBLISHED SINCE THE 1990s. BASICALLY THOSE PARADIGMS INCLUDE BENZODIAZEPINES IN INCREASING DOSAGE, LORAZEPAM USED FREQUENTLY BECAUSE IT'S READILY AVAILABLE AND CHEAPEST AND AVAILABLE ON MULTIPLE FORMS. NOT UNCOMMON FOR A PERSON TOTS REQUIRE HIGH DOSAGE OF LORAZEPAM, 12 TO 18-MILLIGRAMS A DAY WOULDN'T BE UNUSUAL THOUGH IF ANYONE OF US TOOK THE TYPE OF DOSAGE WE WOULD SLEEP UNTIL THE NEXT YEAR. AVOIDANCE OF AGENTS NAMELY ANTIPSYCHOTICS. THAT'S A PROBLEM BECAUSE MANY TIMES IN AUTISM WHEN YOU HAVE PROBLEM BEHAVIORS THE KNEE JERK REACTION IS TO GIVE THE PATIENT ABILIFY WHICH MAY MAKE THE CONDITION WORSE. PATIENTS WHO DON'T RESPOND TO BENZODIAZEPINE RESPOND TO ELECTROCONVULSIVE THERAPY OR EZT. I'M ALMOST DONE BUT I'M GOING TO SHOW MY VIDEO BECAUSE THAT'S WORTH A MILLION WORDS. THIS IS TWO BEFORE AND AFTER VIDEOS. ONE PATIENT YOU'LL RECOGNIZE AS THE PATIENT WHO WAS DEPOSITED ON THE UNIT. SORRY, THERE'S NO SOUND. >> I THINK Y'ALL WORKING ON AUTISM YOU'RE AWARE WHAT SHE'S DOING IS SETTING UP THE SCHEDULE AND WHAT SHE'S ABLE TO EARN. WE TALKED ABOUT ABA NOT BEING A TREATMENT FOR CATATONIA BUT PATIENTS WITH AUTISM OTHER CAT TONE WHERE AND STILL HAVE OTHER ISSUES ARC BROADCASTA CAN BE EXTREMELY EFFICACIOUS MODALITY. ONE OTHER VIDEO. THIS ONE IS A LITTLE DISTURBING. THIS IS PROBABLY THE WORST EXAMPLE OF (INAUDIBLE). THE PATIENT IS -- ENGAGING IN ONGOING REPETITIVE SELF-INJURY. SHE'S ACTUALLY BLIND HERSELF IN BOTH EYES BEFORE SHE CAME TO TREATMENT. THERE YOU SEE HER AFTER TREATMENT THE WATER BOTTLE IS SIGNIFICANT BECAUSE IN COMPARISON TO NEEDING TO BE SPOON FED BEFORE SHE'S NOW ABLE TO FEED HERSELF. GO BACK TO MY LAST SLIDE. >> I INCLUDED A COUPLE OF CLIPS FROM PARENTS JUST TO EMPHASIZE THE IMPACT OF THIS ILLNESS ON FAMILIES AS WELL AS PARENTAL PERSPECTIVE ON TREATMENT. SO YOU SEE IN THE FIRST A FAMILY COMMENTING HOW THEY FELT THEY LOST THEIR SON TWICE, ONCE TO AUTISM, AND AGAIN TO CATATONIA. AND COMMENTING THE WAY CATATONIA TOOK OVER THEIR SON'S LIFE AND FUNCTIONING COMPTELY. AND HOW TREATMENT FINALLY GAVE THEM THEIR CHILD BACK. THE SECOND QUOTE IS FROM FATHER DEALING WITH ONGOING REPETITIVE SELF-INJURIOUS BEHAVIORS IN HIS SON FOR YEARS, HIS SON HAS TO LIVE IN RESTRAINT EQUIPMENT WITH MULTIPLE ATTENDANTS TO KEEP THEM SAFE AND COMMENTING BEING ABLE TO RECEIVE HIS CHILD FOR FIRST TIME AND SEEING HIS CHILD EXPERIENCE PERIODS OF JOY AND HAPPINESS AND NOT EVEN IMAGINING HOW HIS CHILD MIGHT FEEL INSIDE AFTER THIS TYPE OF TREATMENT. SINCE THE CHILD WASN'T ABLE TO SHARE BUT COMMENTING WHAT A CHANGE THIS WAS FROM THE FAMILY. TAKE HOME MESSAGE, AFFECTS MANY WITH AUTISM, CAT TONIC SYMPTOMS WREAK HAVOC ON PATIENT WHOSE SUFFER FROM CATATONIA WHETHER AUTISM OR NOT. THE (INAUDIBLE) CATATONIA IS EASILY DIAGNOSED, ALSO EASILY TREATED ONGOING RESEARCH IS IMPERATIVE. SOMETIMES THESE SITUATIONS SEEM WHAT IMPOSSIBLE BUT VINIAGRETTE THINK SOMETHING IS IMPOSSIBLE YOU SHOULD REMEMBER THE WORDS OF THE WHITE QUEEN WHO TOLD ALICE SHE BELIEVED IN SIX IMPOSSIBLE THINGS BEFORE BREAKFAST EACH DAY. AND IF YOU PREFER A DEAD FRENCH PHILOSOPHER THIS IS (INDISCERNIBLE) WHO SIMILARLY NOTED WE PROBABLY WOULD DO MORE THINGS IF WE BELIEVED FEWER THINGS WOULD BE IMPOSSIBLE. THANK YOU SO MUCH FOR YOUR ATTENTION. [APPLAUSE] >> THANK YOU. OUR FINAL PANELIST FOR THIS PANEL IS RICHARD FRYE FROM ARKANSAS CHILDREN'S HOSPITAL RESEARCH INSTITUTE WHERE HE'S PEDIATRIC NEUROLOGIST AND DIRECTOR OF AUTISM RESEARCH WHO WILL TALK ABOUT IMMUNE METABOLIC CONDITIONS. >> THANK YOU SO MUCH. I WANT TO THANK YOU FOR THE INVITATION TO SPEAK TO YOU TODAY. TODAY WE'LL PROVIDE A BRIEF OVERVIEW OF IMMUNE METABOLIC CONDITIONS RELATEDD TO CHILDREN WITH AUTISM. YOU WILL NOT BE ABLE TO DO THIS TOPIC JUSTICE IN 15 MINUTES I WILL HIGHLIGHT THE MAJOR FINDINGS. SUPER. WHAT'S REALLY EXCITING ABOUT THIS TOPIC IS THAT MANY OF US BELIEVE BETTER UNDERSTANDING OF IMMUNE METABOLIC CONDITIONS WILL GUIDE US TO DEVELOPING TARGETED TREATMENTS THAT WILL ALLOW CHILDREN WITH AUTISM TO ACHIEVE OPTIMAL OUTCOMES POTENTIALLY COMPLETE RECOVERY. A LOT OF WEIGHT ON GENETIC CAUSE OF AUTISM. A RESEN REVIEW DEMONSTRATED ONLY APPROXIMATELY 21 TO 29% OF THE CASES OF CHILDREN WITH AUTISM WITH TRUE IDENTIFIABLE GENETIC CAUSES. THUS, 71 TO 79% OF AUTISM CASES DON'T HAVE A CLEAR IDENTIFIABLE GENETIC ABNORMALITY. ADS SHOWN AT THE BOTTOM OF THE TABLE THERE ARE MANY INHERITED METABOLIC CAN BEES ASSOCIATED WITH AUTISM. THE MARCH JOY TESTIFY THESE DISORDERS HAVE BEEN REPORTED IN ISOLATED CASES AND ARE NOT FOUND IN A NUMBER OF CHILDREN WITH AUTISM. FOR EXAMPLE, OF THE 112 CASES OF MITOCHONDRIAL DISEASE REPORTED IN LITERATURE ONLY 25% OF THEM ARE RELATED TO KNOWN GENETIC ABNORMALITIES. ON THE TOP OF THE SLIDE I LIST SEVERAL METABOLIC IMMUNE CONDITIONS PREVALENT IN CHILDREN WITH AUTISM. THESE CONDITIONS DO NOT APPEAR TO BE INHERITD, YET THEY MAY HAVE A GENETIC COMPONENT. HOWEVER, IT IS CLEAR IF THERE'S GENETIC COMPONENT THAT IT'S COMPLEX AND LIKELY INVOLVES ENVIRONMENTAL TRIGGERS. WHAT'S INTERESTING IS WHAT'S SHOWN ON THE BOTTOM THAT IS THAT MANY OF THESE METABOLIC ABNORMALITIES ARE FOUND IN CERTAIN GENETIC DISORDERS ASSOCIATED WITH AUTISM, SHOW GENES DISRUPTED IN THESE PATHWAYS DO NOT DIRECTLY INFLUENCE THESE METABOLIC PATHWAYS. THIS SUGGESTIONS THESE ABNORMALITIES SHOWN ON THE TOP MAY BE THE FINAL COMMON PATHWAY THAT CAUSE DISEASE IN SOME CHILDREN WITH AUTISM. OUR RECENT SYSTEMATIC REVIEW META ANALYSIS WE FOUND THE ESTIMATED PREVALENCE OF MITOCHONDRIAL DISEASE IN AUTISM IS 5% WHEN CONSIDERING THE ONLY THREE STUDIES IN THE WORLD THAT EXAMINED PREVALENCE, THESE STUDIES USE WHAT'S CALLED THE MODIFIED WALKERS CRITERIA TO DEFINE MITOCHONDRIAL DISEASE. THIS CRITERIA RELIES ON IDENTIFYING GENETIC ABNORMALITIES OR SEVERE DEPRESSION ELECTRON TRANSPORT GENE FUNCTION TO DIAGNOSE KNOW MITOCHONDRIAL DISEASE. HOWEVER, MANY CHILDREN WITH AUTISM AND MITOCHONDRIAL DISEASE DO NOT HAVE IDENTIFIABLE GENETIC ABNORMALITIES AND SOME HAVE ELECTRON TRANSPORT CHAIN OVERACTIVITY RATHER THAN UNDERACTIVITY. THUS USE OF THIS CRITERIA IS SIGNIFICANTLY UNDERESTIMATES THE TRUE PREVALENCE OF MITOCHONDRI DISEASE -- MITOCHONDRIAL DISEASE IN CHILDREN WITH AUTISM, THIS IS AN EXAMPLE IN OUR META ANALYSIS WHEN WE LOOK AT PERCENTAGE OF CHILDREN WITH AUTISM THAT HAVE ABNORMAL BIOMARKERS OF MITOCHONDRIAL DISEASE. YOU CAN SEE THAT THE PERCENTAGES ARE MUCH HIGHER FOR ABNORMAL BIOMARKERS MITOCHONDRIAL DISEASE AUTISM THAN PREVALENCE OF MITE CHON DISEASE ESTIMATED BY STUDIES I JUST MENTIONED. FOR EXAMPLE, 31% OF CHILDREN WITH AUTISM, HAVE ELEVATED LACTATE IN THE BLOOD ESTIMATED BY SIX STUDIES. OTHER USED CAREFULLY SELECTED CONTROL CHILDREN TO CONFIRM SEVERAL BIOMARKERS OF MITOCHONDRIAL DISEASE ARE ABNORMAL WITH CHILDREN WITH AUTISM AS A GROUP SHOWN ON THE BOTTOM. ANOTHER CRITICISM IS BIOMARKERS MAYBE FALSE LILY POSITIVE. IN ONE OF OUR STUDIES WE FOUND BIOMARKER ABNORMALITIES COULD BE VERIFIED FOR SEVERAL BIOMARKERS WHEN BROOD TESTS ARE REPEATED AND CHILDREN WITH VERIFIED ABOUT NORMALITIES DEMONSTRATED OTHER BIOMARKERS WITH MITOCHONDRIAL DISEASE. WE FOUND THREE BIOMARKERS DEMONSTRATED HIGH PREVALENCE OF BEING ABNORMAL IN CHILDREN WITH AUTISM EVEN AFTER REPLICATION. ANOTHER STUDY ON THE BOTTOM ELECTRON TRANSPORT CHAIN COMPLEX ABNORMALITIES WERE FOUND IN 8 OR TEN CHILDREN WITH AUTISM AS COMPARED TO AGE AND GENDER MATCHED CONTROLS. THIS STUDY ALSO SHOWED MITOCHONDRIAL ABNORMALITIES COULD BE ATTRIBUTED TO GENETIC CAUSES IN A SMALL PERCENTAGE OF THESE CHILDREN. IN OUR META ANALYSIS CHILDREN WITH OWENISM MITOCHONDRIAL DISEASE HAD ESPECIALLY HIGH RATES OF SEIZURES MOTOR DELAYS, GASTROINTESTINAL ABOUT NORMALITIES AND CARDIOMYOPATHY SUGGESTING THESE CHILDREN ARE SICKER THAN CHILDREN IN THE GENERAL AUTISM POPULATION. THIS SHOULD DEMONSTRATE THE URGENCY TO IDENTIFY EARLY ON AND TREAT AS THEY ARE HIGH RISK ADVERSE OUTCOMES. FROM Z IN A RECENT STUDY WE DEMONSTRATEDDED CHILDREN WITH AUTISM AND MITOCHORIAL DISEASE HAD SIGNIFICANT LOWER SCORES IN DAILY LIVING SCALES IN BEHAVIOR SCALE AS COMPARED TO CHILDREN WITH AUTISM WITHOUT MITOCHONDRIAL DISEASE. AGAIN, INDICATING CHILDREN WITH AUTISM AND MITOCHONDRIAL DISEASE MORE DEVELOPMENTALLY COMPROMISED THAN OTHERS WITH AUTISM AND PROBABLY SICKER. MANY STUDIES SUGGEST CHILDREN WITH AUTISM HAD ABNORMALITIES IN REDOX, METHYLATION AND FOLATE PATHWAYS, DIAGRAM ON TOP OF THE SLIDE DEMONSTRATE DISEASE PATHWAYS ARE HIGHLY INTERCONNECTED. ABNORMALITIES IN THESE PATHWAYS FOUND IN AUTISM ARE INDICATED IN RED AND THESE ARE ABNORMALITIES VERIFIED IN A RECENT META ANALYSIS. OTHER IMPORTANT STUDIES DEMOB STRAIT THE DIHYDROFOLATE REDUCTASE GENE IS ASSOCIATED WITH AUTISM. THIS IS SIGNIFICANT AS IT SUGGESTS THAT SPECIFIC ACTIVE FORMS OF FOLATE SHOULD BE USED TO TREAT ABNORMALITIES IN CHILDREN WITH AUTISM. OTHER STUDIES SUPPORT THE NOTION OF REDOX ABNORMALITIES IN AUTISM, IN SEVERAL INDEPENDENT STUDIES DR. JILL JAMES AND GROUP VERIFIED GLUTATHIONE ABNORMALITIES IN MULTIPLE TISSUE TYPES INCLUDING POSTMORTEM BRAIN FROM CHILDREN WITH AUTISM. SEVERAL DEMONSTRATED OXIDATIVE DAMAGE TO PROTEINS LIPIDS AN DNA IN CHILDREN WITH AUTISM. DR. JAMES' GROUP HAS SHOWN REDOCK ABNORMALITY RESULTS IN EPIGENETIC CHANGES IN CHILDREN WITH AUTISM AND HAS SPECIFICALLY DEMONSTRATED HYPOMETHYLATION OF DNA IN CHILDREN WITH WITH AUTISM. SUCH EPIGENETIC CHANGES ALTER EXPRESSION OF GENES REGARDLESS OF WHETHER GENETIC CODE IS NORMAL OR ABNORMAL. PERHAPS MOST IMPORTANTLY, DR. JAMES' GROUP DEMONSTRATED GLUTATHIONE REDOX ABNORMALITIES ARE TREATED WITH SAFE AND GERALLY WELL TOLERATED COMBINATION OF VITAMIN B 12 AND FILINIC ACID. MANY STUDIES HAVE SHOWN ABNORMALITIES IN VARIOUS PARTS OF THE IMMUNE SYSTEM AND AUTISM, SEVERAL STUDIES VERIFIED CHILDREN WITH AUTISM INCREASE PREVALENCE OF AUTOIMMUNE DISEASE AND THEIR FAMILY. MANY STUDIES REPORTED ABNORMALITIES IN CHILDREN WITH AUTISM. STUDIES VERIFY RAREIOUS ANTIBODIES INCLUDING AUTOANTIBODIES DIRECTD TO BRAIN TISSUE AND TO THE FOLATE RECEPTOR ALPHA JUST TO NAME A FEW. SOME WITH AUTISM HAVE REDUTIED IMMUNOGLOBULINS. THIS APPEARS TO BE A SIGNIFICANT AS LOWER LEVELS OF IMMUNOGLOBULIN G CORRELATE WITH MORE SIGNIFICANT AUTISTIC BEHAVIORS IN TWO STUDIES. TREATMENT WITH INTRAVENOUS IMMUNOGLOBULIN IS REPORTED IN SEVERAL SMALL OPEN LABEL STUDIES. THE RESULTS OF THESE STUDIES ARE MIXED BUT AT LEAST THREE REPORTED IMPROVEMENTS IN SOME CHILDREN WITH AUTISM, WITH THIS TREATMENT. SEVERAL STUDIES REPORTED PRO INFLAMMATORY CYTOKINES IN BLOOD, BRAIN TISSUE AND CEREBRAL SPINAL FLUID IN CHILDREN WITH AUTISM. PRO-INFLAMMATORY CYTOKINES PRODUCE BY REACTIVE ASTROCYTES THAT WERE ASSOCIATED WITH ACTIVATED MICROGLIAL CELLS. THERE'S OTHER EMERGING AGENTS THAT BRAIN MICROGLIAL ACTIVATION IS REPORTED IN AUTISM. MOST NOTABLY ONE STUDY HAS REPORTD THE MICROGLIA APPEAR TO BE KEY IN DEVELOPMENT OF DISEASE IN A RED MOUSE MODEL. WE BELIEVE UNDERSTANDING ABNORMALITIES IN THE IMMUNE MITOCHONDRIAL AN REDOX SYSTEM IS CRUCIAL TO UNDERSTANDING THE PATHOPHYSIOLOGY INVOLVED IN AUTISM FOR SEVERAL REASONS. THESE THREE SYSTEMS ARE INTERCONNECTED SUCH THAT DYSFUNCTION IN ONE SYSTEM CAN CAUSE DYSFUNCTION IN ANOTHER. SECOND RECENT STUDIES SUGGESTED AUTISM IS CAUSED BY GENETIC AND ENVIRONMENTAL INTERACTIONS. ALL THESE SYSTEMS ARE STRONGLY INFLUENCED BY BOTH ENVIRONMENT AND GENETICS. THIRD, EMERGING EVIDENCE SUGGESTIONS THAT CHANGES IN GENE EXPRESSION BY EPIGENETICS ARE SIGNIFICANT IN AUTISM. ALL THESE SYSTEMS ARE KNOWN TO MODULATE GENETIC MECHANISMS. FOURTH MOST IMPORTANTLY THESE SYSTEMS ARE AMENABLE TO TREATMENT. SO UNDERSTANDING THESE ABNORMALITIES AND APPLYING TARGETED TREATMENT WILL ALLOW MANY CHILDREN WITH WITH AUTISM TO ACHIEVE OPTIMAL OUTCOMES. FROM Z INTERACTIONS BETWEEN THE SYSTEMS ARE IMPORTANT TO UNDERSTAND AND I WILL PROVIDE TWO EXAMPLES. WE HAVE RECENTLY DEMONSTRATED THE MITOCHONDRIA IN A SUBSET OF INDIVIDUALS WITH AUTISM, ARE SENSITIVE TO OXIDATIVE STRESS. WHEN WE CHALLENGE LYMPHOPALACEOID CELL LINES DERIVED FROM CHILDREN WITH AUTISM WITH DMIDQ THAT INCREASES OKAY DAYTIVE STRESS INSIDE THE CELL, APPROXIMATELY 45% OF THE CELL LINES DEMONSTRATED AN ATYPICAL MITOCHONDRIAL RESPONSE WITH A A PRECIPITOUS DROP IN RESERVE CAPACITY. SINCE RESERVE CAPACITY IS TIGHTLY RELATED TO CELL VIABILITY, THESE DATA SUGGEST CERTAIN CHILDREN WITH AUTISM HAVE MITOCHONDRIA THAT ARE VERY SENSITIVE TO OXIDATIVE STRESS. CELL LINES ATYPICAL WITH HIGHLIGHTED RESPONSES RED LINES AND SYMBOLS IN THE GRAPH. IN ADDITION PRE-TREATMENT OF CELL LINES WITH ABNORMAL MITOCHONDRIAL RESPONSIBILITIES WITH POTENT ANTIOXIDANT ELIMINATED THE ATYPICAL MITOCHONDRIA TO OXIDATIVE STRESS INDICATING POTENTIAL TREATMENT. TO CONFIRM MITOCHONDRIAL ABNORMALITIES WE MEASURED FUNCTION IN FRESH IMMUNE CELLS FROM 35 CHILDREN WITH AUTISM. WE FOUND THE SAME PATTERN OF ABNORMALITIES IN 34% OF THE CHILDREN. CHILDREN WITH ATYPICAL MITOCHONDRIAL RESPONSE HAVE MORE SEVERE DEVELOPMENTAL PROBLEMS DAILY LIVING AND SOCIALIZATION SKILLS MEASURED BY THE ADAPTIVE BEHAVIOR SCALE INDICATING THESE CHILDREN WITH ABNORMAL MITOCHONDRIAL RESPONSES WERE MORE DEVELOPMENTALLY COMPROMISED. ANOTHER EXAMPLE OF WHERE THESE SYSTEMS INTERACT IS CENTRAL FOLATE ABNORMALITIES. THE MAIN ROOT FOR FOLATE TO ENTER THE BRAIN INVOLVES THE FOLATE RECEPTOR ALPHA. THIS TRANSPORTATION MECHANISM CAN BECOME DYSFUNCTIONAL DUE TO AUTOANTI-BODIES TO THE FOLATE RECEPTOR ALPHA, AND/OR MITOCHONDRIAL DYSFUNCTION. TWO ABNORMALITIES THAT HAVE SHOWN TO AFFECT CHILDREN WITH AUTISM. WE DEMONSTRATED A HIGH PREVALENCE OF THESE AUTOANTIBODIES IN CHILDREN WITH AUTISM. THIS HIGH PREVALENCE HAS BEEN CONFIRMED BY I DID PEN DEN GROUP IN BELGIUM. AN IMPORTANT ASPECT OF THIS FUNCTION OF THE FOLATE RECEPTOR ALPHA IS THAT MANY CHILDREN WITH AUTISM ARE AMENABLE TO TREATMENT WITH HIGH DOSE ACTIVE FOLATE SUCH AS FALENIC ACID, GENERALLY VERY WELL TOLERATED AND SAFE. IN TWO STUDIES FOR EXAMPLE, 11 TO 20% OF CHILDREN COMPLETELY RECOVEREDDED FROM SEVERE AUTISM WITH FALENIC ACID TREATMENT. LARGE IMPROVEMENTS IN AUTISM SYMPTOM T HAVE BEEN DOCUMENTED IN CASE SERIES INCLUDING A LARGE CONTROLLED CASE SERIES WE RECENTLY PUBLISHED. WE ARE CURRENTLY INVESTIGATING THE EFFICACY OF THE ACID FOR AUTISM IN A LARGE MULTI-CENTERED DOUBLE BLIND PALACEPLASTS BOW CONTROL TRIAL. THIS STUDY WILL EXAMINE KEY BIOMARKERS FOLATE RECEPTOR ALPHA ANTIBODIES PREDICT TO SUMMARIZE WE BELIEVE IMMUNE METABOLIC DISORDERS ARE EXTREMELY IMPORTANT TO INVESTIGATE FURTHER. THERE ARE KEY QUESTIONS THAT STILL NEED TO BE ADDRESSED. MOST IMPORTANTLY, WE MUST UNDERSTAND HOW WE CAN BEST TREAT THESE DISORDERS IN ORDER TO ACHIEVE OPTIMAL OUTCOMES FOR CHILDREN WITH AUTISM. IN A RECENT REVIEW, WE DEMONSTRATED THESE AREAS OF RESEARCH ARE ON THE RISE BUT NUMBER OF STUDIES ARE ABOUT TEN TIMES FEWER COMPARED TO MORE TRADITIONAL AREAS OF RESEARCH IN AUTISM SUCH AS GENETICS. THUS, THERE IS IMMEDIATE NEED TO SUBSTANTIALLY INCREASE FUNDING FOR THESE IMPORTANT AREAS OF RESEARCH SO WE CAN BETTER UNDERSTAND THE UNDERLYING PATHOPHYSIOLOGY THAT AFFECTS CHILDREN WITH AUTISM, DEVELOP MORE EFFECTIVE TREATMENTS, AND EVEN PREVENT AUTISM FROM DEVELOPING IN SOME CHILDREN. THIS WAY THE IACC CAN HELP MOVE RESEARCH FORWARD BY MAKING STRONG RECOMMENDATIONS IN ORDER TO ACHIEVE OPTIMAL OUTCOMES FOR THE ESTIMATED 1.5 MILLION CHILDREN IN THE UNITED STATES WITH AUTISM. THE IF YOU REMEMBER ONE THING FROM MY TALK, AT LEAST A SUBSET OF CHILDREN WITH AUTISM CAN COMPLETELY RECOVER OR GREATLY IMPROVE TARGETED TREATMENTS WITH UNDERLYING IMMUNE METABOLIC CONDITIONS. IT'S TEN% OF CHILDREN WITH AUTISM RECOVER WITH SAFE AND INEXPENSIVE TREATMENTS SUCH AS HIGH DOSE FALENICSC ACID, THAT TRANSLATES TO 150,000 CHILDREN IN THE UNITED STATES. I THANK YOU FOR THE OPPORTUNITY TO PRESENT TODAY AND AM AVAILABLE FOR QUESTIONS AND HP OUT ANY WAY WE CAN. THANK YOU FOR TAKING THE TIME TO LISTEN TO MY PRESENTATION. [APPLAUSE] >> OKAY. I'M GOING TO TAKE OVER FROM ALAN. WE'RE ALMOST AN HOUR PAST WHERE WE SHOULD BE ON THE SCHEDULE BUT I WANT TO MAKE SURE YOU ALL HAD A CHANCE TO HEAR EACH OF THESE PRESENTATIONS BECAUSE WE HAVE GOT FOUR EXTRAORDINARY EXPERTS AT THE TABLE AND THIS IS A DISCUSSION WE HAVEN'T HAD BEFORE, MANY -- MUCH WHAT WE JUST HEARD IS ACTUALLY NOT TALKED ABOUT AT THE IACC IN THE PAST. SO I THOUGHT IT'S WORTH TAKING THE EXTRA TIME. I'M GOING TO SUGGEST SINCE WE HAVE A LUNCH BREAK COMING UP THAT WAS SCHEDULED FOR AN HOUR THAT WE JUST COME PRESS THAT AND WE TAKE A LITTLE TIME FOR DISCUSSION NOW. I KNOW THERE WILL BE SOME TALK ABOUT WHAT WE NEED TO DO ABOUT WHAT WE HAVE JUST HEARD. I WANT TO SUGGEST WE LEAVE THAT TO THE END OF THE DAY FOR BUSINESS OF THE COMMITTEE AND USE 10, 15 MINUTES TO TAKE ADVANTAGE OF THE THE EXPERTS AT THE TABLE FOR FURTHER QUESTIONS, CLARIFYING QUESTIONS, QUESTIONS ABOUT WHAT YOU HAVE HEARD WITHOUT IMPINGING MUCH FURTHER ON THE SUBSEQUENT SPEAKERS BECAUSE LOTS OF OTHER THINGS TO HEAR TODAY. SO LET'S TAKE IF IT'S OKAY WITH THE COMMITTEE ABOUT 15 MINUTES NOW TO DISCUSS AND THEN CUT THIS SHORT AT THAT POINT AND WE'LL MOVE ON WITH THE REST OF THE AGENDA KNOWING WE'LL PICK UP SOMETIME DURING THE LUNCH BREAK. JOHN. >> I WOULD LIKE TO PREFACE MY COMMENT BY SAYING THAT I APPRECIATE THE PRESENTATIONS ALL OF YOU HAVE BROUGHT US. THEY WERE ALL INSIGHTFUL AND GOOD IT TROUBLES ME GREATLY THOUGH THAT I HEARD TIME AND AGAIN CHILDREN WITH AUTISM THIS, CHILDREN WITH AUTISM THAT. WE KNOW AUTISM IS A LIFE-LONG CONDITION. WE KNOW CHILDHOOD IS ONLY ONE-FOURTH OF THE LIFE SPAN AND LOGIC TELLS US TALKING ABOUT CHILDREN WITH AUTISM IS TALKING ABOUT ONE QUARTER OF THE AUTISTIC POPULATION. I HEARD IN ONE OF YOUR PRESENTATIONS FOR EXAMPLE, HOW THERE WAS PRECIPITOUS DROP FOR QUALITY OF LIFE, IT WENT FROM 70% AT AGE 5 TO 50% AT AGE 12 SO I EXTRAPOLATE DOES IT MEAN 10% AT 50 AND DEAD AT 65 OR BOTTOM OUT AND RISES? IT SOUNDS LIKE A JOKE BUT IT'S A VALID QUESTION. I HEAR FROM YOU ABOUT THIS IMMUNE DYSFUNCTION AND THAT IT CAN MEAN BAD THINGS FOR CHILDREN. I LOOK AT MY OWN LIFE AND MY SON'S MOTHER WHO HAS AUTISM, 55 YEARS OLD AT MASSGENERAL HOSPITAL RIGHT NOW WITH IMMUNE DYSFUNCTION THAT SHE OF. AND I HAVE TO ASK IS THAT A AUTISM RELATED IMMUNE DYSFUNCTION, AS MUCH AS I VALUE THE WORK THAT YOU FOLKS HAVE BROUGHT HERE AND AS IMPORTANT AS IT IS, TO STUDY ISSUES RELATING TO AUTISM IN CHILDREN, HEARING THE FOCUS ON CHILDREN MAY RECOLLECTS IT SO CLEAR WE HAVE TO SHIFT OUR PRIORITIES AND WE HAVE TO PUT MORE RESOURCES INTO AS CERTAINING HOW ADULTS WILL LIVE WITH AUTISM. AND WE NEED TO BE ASKING ALL THE QUESTIONS YOU HAVE ASKED. FOR THE HUMAN POPULATION AS A WHOLE. NOT JUST CHILDREN. I THANK YOU AS SAY FOR WHAT YOU HAVE BROUGHT US BUT WE HAVE GOT TO GO FOR THE REST OF THE POPULATION. >> JERRY. >> THAT'S A VERY GOOD SET UP FOR THE QUESTION I HAD FOR CLINICIANS AND WE TALKED ABOUT A RANGE OF CONDITIONS HERE, IMMUNE AND GI AND SO FORTH. HOW OFTEN DO YOU SEE THESE TYPICALLY AS SOMETHING THAT PRESENTS EARLY AND IS A PRETTY STABLE PART OF THE PHENOTYPE? VERSUS SOMETHING THAT EMERGES MAYBE ADOLESCENCE OR ADULTHOOD? SO I JUST LIKE TO ADD MORE A DEVELOPMENTAL PERSPECTIVE. DO WE SEE THESE WORSENING OVER TIME? ANY DEVELOPMENTAL PERSPECTIVE IS HELPFUL. >> I THINK THIS IS A REALLY IMPORTANT QUESTION. ONE OF THE PROBLEMS IN STUDYING THESE DISORDERS IS WE'RE FINDING THEM AFTER THE CHILD IS DIAGNOSED WITH AUTISM. WE DON'T KNOW IF THESE ARE PART OF THE PATHOPHYSIOLOGY THAT CAUSES AUTISM. THAT IS A KEY QUESTION. WE KNOW WE HAVE INSIGHT TO PATHOPHYSIOLOGY AND WE DEVELOP BIOMARKERS WE CAN LOOK BEFORE THE AUTISM DEVELOPS AND PREVENT IT. S THAT THE WHOLE GOLDEN TYPE OF THING. YOUR POINT ABOUT THE DEVELOPMENTAL COURSE IS VERY IMPORTANT. A LOT OF TIMES PEOPLE ARE TRAINED THAT WELL IF YOU DOPE DO THINGS EARLY ON,S IT IS TOUGH FOR KIDS TO RECOVER. SOME DISORDERS, CEREBRAL FOLATE DEFICIENCY IN PARTICULAR, IF IDENTIFIED AT ANY POINT, YOU CAN SEE SUBSTANTIAL RECOVERY, ACTUALLY IN OUR PAPER, IT WAS LARGE CASE SERIES, DOUBLE BLIND PLACEBO TRIAL, WE DID SEE THERE'S SOME INDIVIDUALS A LITTLE BIT OLDER, 8, 10, 12 RESPOND BETTER TO TREATMENT. SO IT IS AN OPEN QUESTION. I THINK IT IS AN OPEN QUESTION. I THINK WE TALK ABOUT CHILDREN BUT I THINK WE HAVE TO ALMOST TAKE CHILDREN OUT OF IT IN THE SENSE THAT WE HAVE TO LOOK AT AUTISM AS LIFE LONG DISEASE AND SEE THE INDIVIDUAL NEEDS ANY TIME WE SEE THEM. INSTEAD OF TALKING ABOUT AGE BECAUSE WE KNOW THEY CHANGE VERY DIFFERENTLY AS THEY AGE. IT MAY BE THESE DISORDERS MAY ACCOUNT FOR SOME OF THAT. BUT I THINK IT'S A REALLY IMPORTANT POINT. >> CAN WE GET A CLARIFICATION? LEE, YOU TALKED IN YOUR PRESENTATION AT THE BEGINNING ABOUT SOMETHING RELATED TO PUBERTY AND THE ONSET OF CATATONIA. AN EXAMPLES YOU GAVE WERE MOSTLY ADOLESCENTS OR OLDER PEOPLE THAT THE CASE SOMETHING TIED TO A PARTICULAR DEVELOPMENTAL STAGE? >> TYPICALLY LITERATURE POINTS THE CATATONIA OCCURRING PROM INNOCENTLY IN ADOLESCENCE AND YOUNG ADULTHOOD, MOST PATIENTS TEND TO PRESENT AROUND THAT TIME THOUGH SOME RESEARCHERS HAVE STEPPED BACK AND SAID SYMPTOMS WITH OVERLAP BETWEEN SYMPTOMS OF AUTISM AND CATATONIA COULD AUTISM COULD BE LIKE INCLUSIVE CATATONIA BUT THE SYMPTOMS I DESCRIBE USUALLY ARE SEEING PATIENTS PRESENT AS TEENAGERS, YOUNG ADULTS. ONE OF THE PATIENTS IN THE PRESENTATION WAS 25. PEDIATRIC HOSPITAL TYPICALLY IN THE LITERATURE THE PATIENTS CLUSTER AROUND THAT AGE, DEVELOP MENTAL LONG TERM PERSPECTIVE, WHAT'S IMPORTANT ABOUT CATATONIA RELATED TO AUTISM COMPARED TO CATATONIA AS MAJOR DEPRESSION PSYCHOTIC ILLNESS OR MEDICAL ILLNESS WHERE YOU OFTEN TIMES GET GOOD CONTROL OF SYMPTOMS IF YOU KEEP GOOD CONTROL OF THE MOODSIS ORDER. WE DON'T HAVE A WAY TO CHANGE THE UNDERLYING SUBSTRATE OF THE AUTISM. SO FOR MOST PATIENTS THE TREATMENTS ARE MORE TREATMENTS RATHER THAN A CURE. AND THESE BECOME SITUATIONS THAT CONTINUE AND REQUIRE ONGOING ATTENTION. WITH THAT ATTENTION CAN LOAD TO MORE DIFFICULTIES AN ACCRUE MORBIDITY. >> DR. WACHTEL, COULD YOU SPEAK MORE ABOUT THE EVIDENCE BASE FOR ECT AND -- IN THIS POPULATION OF EXTREMELY CHALLENGED INDIVIDUALS. I THINK SOMETIMES PEOPLE5?O CONFUSE EZT WITH OTHER TYPES OF ELECTRONIC INTERVENTIONS FOR BEHAVIOR MANAGEMENT WHICH WE KNOW NON-EVIDENCE BASED. >> THAT IS A BIG QUESTION. FIRST I CAN START BY CLARIFYING. I THINK ONE OF THE BIGGEST TROUBLES THAT PLAGUE EZT IN THIS POPULATION IS PEOPLE ACERTAINIATE THAT WITH ELECTRIC SHOCK, WHAT WAS USED AS A PUNISHMENT PROCEDURE. LOOK BACK INSIDE THE LITERATURE IN THE 1950s, THIS WAS A DEVELOPMENT IN THE ABA WORLD OF RESPONSE REDUCTION PROCEDURES BUT PUNISHMENT PROCEDURES. IN THE 50s THEY WOULD SLAP THE PATIENTS OR SHAKE THEM AND THEN THEY DEVELOP ADVERSESIVES AND SO ELECTRIC ADVERSESIVES WERE USED REGULARLY AND THEY DID USE THINGS SUCH ADS SEARS AND ROW BUCK COW PRODS, OTHERS INCLUDED BAD TASTE OR SPRAYING A MIST IN SOMEBODY'S FACE. THE USE OF CONTINGENT ELECTRIC SHOCK AS PUNISHMENT PROCEDURE HAS NOTHING TO DO WITH ELECTROCONVULSIVE THERAPY. THEY DON'T USE THE SAME TYPE OF ELECTRICITY. IT'S IMPORTANT TO KEEP IN MIND ELECTRIC SHOCK MAY WORK THROUGH CONDITIONS BUT YOU CAN TAKE A CHILD WITH ADHD AND GET THEM TO STAY IN THEIR SEAT IF THEY KNEW EVERY TIME THEY WERE GOING TO GET UP YOU WERE GOING TO SHOCK THEM WITH A PAINFUL STIMULUS. I TALKED TO SOME PARENT WHOSE VISITED THE JUDGE RATBURG CENTER AND HAD IT TRIED ON THEM AND THEY REPORTED IT TO BE EXTREMELY PAINFUL. SO IT HAS NOTHING DO WITH ECG OR ELECTROCONVULSIVE THERAPY, BASICALLY THE BENEFIT OF EZT IS NOT NECESSARY HI ELECTRICITY BUT INITIATION OF SEIZURE DEEP BILATERALLY WITHIN THE CORTEX. IT HAPPENS TO BE MOST CONVULSIVE THERAPY OR ALL NOW IS DONE WITH ELECTRICITY, INITIALLY IT WAS DONE WITH INJECTION, YOU CAN USE A GAS. SO ELECTRICITY IS A MEANS TO INDUCE THERAPEUTIC SEIZURE IN A MEDICALIZED SETTING WHERE PATIENTS ARE MONITORED TO -- IT WOULD BE LIKE A SERGE SUITE UNDER ANESTHESIA AND MUSCULAR BLOCKADE TO TARGET DISCRETE SYMPTOMS SO ECT INDICATED FOR -- AND HAS INDICATION FOR CATATONIA, MAJOR DEPRESSION, BIPOLAR DEPRESSION AND PSYCHOTIC PARTICULARLY PARKINSON'S. YOU'LL SEE PATIENT REPORTS OF PATIENTS WITH STRANGER MOVEMENT DISORDERS WHO HAD RELIEF FROM EZT. IN I'M SORRY THE OF CHILDREN, ANY -- IN TERMS OF CHILDREN, ANY USAGE DATES BACK TO '40s, THERE WAS STUDIES WILL NEW YORK AND PARIS THAT WOULDN'T MEET OUR STANDARDS BUT SIGNIFICANTLIER REPORTED BENEFIT TO THE CHILDREN MANY MOM IF YOU READ DESCRIPTIONS PROBABLY WOULD HAVE BEEN DIAGNOSED AS AUTISTIC TODAY. WITHOUT EVIDENCE OF LONG TERM DAMAGE. THERE IS NOT A LOT OF LITERATURE ON CHILDREN WHO RECEIVED EZT UNTIL YOU JUMP TO THE '80s. IN THE '80s APPROXIMATE '90s THERE IS A GROWING NUMBER OF MOSTLY CASE REPORTS OF CHILDREN, TYPICALLY DEVELOPING CHILDREN WITH MOOD DISORDER, PSYCHOTIC DISORDERS, MANY WHOM IF YOU READ THEM THE CASES ALSO HAD SELF-INJURIOUS BEHAVIOR WHO WERE SAFELY AND EFFICACIOUSLY TREATED WITH ELECTROCONVULSIVE THERAPY AND STARTING IN THE '90s THE FLOOD GATES WERE OPENING IN THE PAST DECADE A HUGE INFLUX OF LITERATURE ON PATIENTS WITH MENTAL RETARDATION WITHOUT AUTISM AND THEN PATIENTS WITH AUTISM SPECTRUM DISORDER WHO ARE TREATED SAFELY EFFICACIOUSLY WITH ELECTROCONVULSIVE THERAPY FOR CATATONIA ITSELF, FOR MOOD DISORDERS WITH CATATONIA AND ALSO FOR SELF-INJURIOUS BEHAVIORS. IT'S AN AREA THAT REQUIRES A LOT MORE RESEARCH, ONGOING RESEARCH IN PATIENT FOLLOW-UP. WE SAW PATIENT FOLLOW-UP IN TWO CASES IN TERMS OF LONGITUDINAL NEUROPSYCH FOLLOW-UP, THE QUESTION IS ARE YOU DOING DAMAGE. THERE'S NO EVIDENCE OF THAT IN THE LITERATURE ON MED LINE THOUGH IF YOU GET TO THE INTERNET AND GOOGLE, YOU'LL SPET GET A LOT OF EVIDENCE OF DAMAGE BUT THAT'S NOT SCIENCE OR BACKED BY RESEARCH. IN TWO PATIENTS WHERE WE WERE ABLE TO DO SERIAL NEUROPSYCHOLOGICAL TESTING WE FOUND THAT THERE WAS NO DIFFERENCE IN THEIR PROFILES OF THE COURSE OF ONGOING ECT TREATMENT FOR UNDERLYING CONDITION. >> THANK YOU. SCOTT. >> I WANTED TO CONCUR WITH WHAT JOHN SAID PREVIOUSLY ABOUT I DID NOTICE WITH CATATONIA IT WAS REFERRING MORE TO ACROSS THE LIFE SPAN REFERRING MORE TO ADULTS AND ADOLESCENTS BUT A LOT OF OTHER DISCUSSIONS ONC OCCURRING CONDITIONS DID NOT TOUCH ON LIFE SPAN. I THINK IT AFFECTS THE FACT THAT WE ARE NOT GOING TO GET DATA BECAUSE THE CYCLE OF LOOKING AT KIDS, THAT'S WHAT WE HAD DISCUSSION ON AND THEN WE DON'T GET DATA ON ADULTS WHICH IMPACTS SUPPORTS AND SERVICES APPROXIMATE QUALITIES OF LIFE ACROSS THE LIFE SPAN SO I WANTED TO CONCUR ON THAT, I THINK IT'S SOMETHING THAT NEEDS TO BE MOVED FORWARD AND WHEN WITH WE HAVE DISCUSSIONS IN FUTURE AROUND CO-OCCURRING CONDITIONS THAT WE CAN MAKE SURE PARTICULARLY HAVE EMPHASIS AT SOME POINT ON ADULT AND ADOLESCENTS SINCE IT'S LEFT OUT, SO CONSISTENTLY NOT JUST HERE BUT DISCUSSIONS ACROSS THE BOARD IN RESEARCH, PRACTICE AND IT'S A MAJOR HOLE IN THE SCIENCE, PRACTICE ACTIVITIES AND I THINK IT NEEDS TO BE ADDRESSED FOR SAKE OF AUTISTIC ADULTS AND ADOLESCENTS OUT THERE IN THE WORLD AND OUR FAMILIES. >> I PERSONALLY WANT TO THANK THE PRESENTERS HERE TODAY FOR COMING AND TOM AND SUSAN FOR ORGANIZING THIS TODAY. OVER THE YEARS WE HEARD FROM FAMILIES IN OUR PUBLIC COMMENT PERIOD ABOUT THE UNDERLYING MEDICAL CONDITIONS THAT THEIR CHILDRENoVm HAVE THAT ARE OFTEN OVERLOOKED. IT WAS BACK IN 2009 WE ADDED INTO THE STRATEGIC PLAN A CROSS CUTTING THEME OF COMORBIDITIES. BACK TO THAT IN A MINUTE. BUT I JUST AM SO IMPRESSED HOW THIS IS Z HAS CHANGED IN THE LAST FOUR TO FIVE YEARS BECAUSE WHEN THE ISSUE WAS FIRST BROUGHT TO THE IACC, THE RECOGNITION OF COMORBIDITIES WASN'T THERE AND IT WASN'T UNTIL JERRY CAME AN PRESENTED TO THE ATN DATA ABOUT GI AND SLEEP THAT IT'S REALLY GOTTEN ON THE RADAR SCREEN AND THERE IS SO MUCH MORE WE CAN DO, IS IS LOW HANGING FRUIT WHERE WE CAN IMPROVE THE LIVES OF CHILDREN NOW. DR. PERRIN I WROTE DOWN ONE OF YOUR COMMENTS WHERE YOU SAID YOU WOULD LIKE TO HAVE ADVICE FROM THE IACC ON WHAT ISSUES ARE IMPORTANT. A LOT OF FAMILIES WROTE IN THIS TIME AN OVER THE YEARS I HAVE MADE COPIES OF THOSE FOR YOU AND HAND DELIVERED THOSE. I HOPE YOU HAVE THE DONE TO READ THROUGH THEM BECAUSE THEY'RE RICH IN TERMS OF COMORBIDITIES THAT THEY SEE MOST OFTEN IN THEIR CHILDREN. MANY PARENTS ARE FRUSTRATED BECAUSE THAW EAR BEING OVERLOOKED. I KNOW THERE'S WONDERFUL THINGS HAPPENING WITHIN THE ATM NETWORK BUT WE NEED TO MAKE SURE THAT GETS OUT TO THE GENERAL PEDIATRICIANS, FAMILY PRACTITIONER, MID LEVEL PROVIDERS. THAT'S ESSENTIAL I WOULD LOVE TO SEE IT INCLUDE AN ENTIRE DAY ON AUSM AT A CONFERENCE. HAVE DR. BUIE COME AND SPEAK ABOUT GASTROINTESTINAL DISORDERS IN AUTISM. THAT WOULD BE HUGELY IMPORTANT IN TERMS OF RAISING AWARENESS. WE NEED TO TAKE IT A STEP FURTHER. OUR STRATEGIC PLAN WHEN WE DID THIS UPDATE WE ALSO SAID IT WAS IMPORTANT FOR THE DEVELOPMENT OF MULTI-DISCIPLINARY HEALTH ASSESSMENT AND P EFFECTIVE TREATMENT GUIDELINES THAT CAN IMMEDIATELY IMPROVE THE QUALITY OF LIFE FOR INDIVIDUALS WITH ASD AND THEIR FAMILIES. THAT IS SOMETHING WE DON'T HAVE YET. WE HAVE A LOT OF SCIENCE COMING IN. I'M AMAZED WHEN I LOOK AT MY MAIL THE NEW ARTICLES THAT ARE COMING IN. I CAN'T KEEP UP WITH THEM ANY MORE. I FEEL LIKE WE NEED SOME GROUP CATALOGING THAT INFORMATION AND SAY THIS IS THETENTH STUDY DOCUMENTED IN GLUTATHIONE. AND MITOCHONDRIAL. WHAT DO WE NEED TO DO TO TRANSLATE THAT INFORMATION INTO A SCREENING TOOL OR TREATMENT GUIDELINES. IS THE LIT THATTURE NOT ROBUST YET, THAT NEED TO BE IN THE STRATEGIC PLAN SO WE CAN SAY THAT'S AN IMPORTANT AREA STUDIED. SOME LIAISON WITH THE AMERICAN ACADEMY OF PEDIATRICS AND IACC POSSIBLY A TASK FORCE AND ALSO WITH ATN, NETWORKS DO THESE STUDIES FOR US AND WORK ON DIEMINATING THAT INFORMATION OUT TO HEALTHCARE PROVIDERS AND OUR FAMILIES. I WANT TO KNOW WHAT WE CAN DO AS NEXT STEP, I WOULD LIKE TO PROPOSE A TASK FORWARD OR SUBCOMITTEE TO WORK ONCO MORBIDITIES, IT IS LOW HANGING FRUIT TO IMPROVE THE LIVES OF INDIVIDUALS WITH WITH AUTISM TODAY. ONE OF THE COMMENTS THAT YOU MADE IS SOMETIMES YOUR PATIENTS COME IN AND PUT ICE CUBE ON THEIR CHEST AND TELL YOU THEIR ESOPHAGUS IS HURTING BY THAT BEHAVIOR. IN THE VIDEOS I WATCH, THE CHILDREN ARE REPEATEDLY HIT THEIR HEAD. WITH NEUROINFLAMMATORY PROCESS GOING ON IN THE BRAINS OF THESE CHILDREN, IF WE CAN LOOK AT THAT BECAUSE I THINK THAT'S A CLUE. I ACCOMPLISH HAVE ASSISTED WITH ECT THERAPY IN NURSING SCHOOL IN THE '70s, I FOUND IT INCREDIBLY DIFFICULT TO PARTICIPATE IN, I WAS SO GLAD TO RECEIVE THAT FELL OUT OF TREATMENT FOR DEPRESSION. MY READING I WANT PAYMENT ASSOCIATED WITH REPEATED ECT THERAPY SO I THINK IF WE CAN GET TO WHAT THE CORE UNDERLYING PROBLEMS. WHOSE CHILD HAS CEREBRAL FOLATE RECEPTOR LOW LEVEL CEREBRAL FOLATE SPINAL FLUID. TREATED EFFECTIVELY WITH LEUKOMOARN. WHERE CC ED ON EMAILS NOT IN TIME FOR PUBLIC COMMENT. SO WE NEED TO EXHAUST ALL THE OTHER POTENTIAL ETIOLOGIES FOR SELF-INJURIOUS BEHAVIOR BEFORE WE MOVE FORWARD WITH ELECTROCOMPULSIVE THERAPY. >> WE NEED TO MOVE ON BECAUSE OF TIME I KNOW OTHERS HAVE QUESTIONS. BUT JUST A MOMENT. WHAT I WOULD LIKE TO ASK IS FOR IF THERE ARE QUESTIONS FOR EXPERTS WE CAN CONVEY THOSE AFTER THE MEETING AND MAKE SURE WE GET A RESPONSE. YOU PUT ONE THING ON THEe"s TABLE WE PROBABLY SHOULD DR. PERRIN ABOUT LATER WITH NEXT STEPS AND WHAT THE BUSINESS WOULD BE. IF WE'RE LOOKING FOR A WAY TO INTERACT CLOSELY WITH AAP, WHAT WOULD THAT BE? >> SEVERAL WAYS TO INTERACT WITH THE ACADEMY BUT WE HAVE A TASK FORCE ON AUTISM WITHIN THE ACADEMY AND THAT'S A NATURAL EASY SOURCE BUT WE HAVE A NUMBER OF AREAS WITHIN THE ACADEMY WORKING ON TRYING TO IMPROVE UNDERSTANDING THE IMPROVE CARE AND IMPROVE TRAINING. SO I THINK WE WOULD START AT THAT LEVEL BUT I WOULD ASSURE YOU THAT THIS IS HIGH LEVEL INTEREST TRYING TO BUILD CONNECTION WITH THE IACC AND JUST MOMENTARILY CHANGE MY HAT, ANOTHER ATN WE'RE INTERESTED THIS THOUGHTS OF THE IACC AS TO WHAT'S THE PRIORITIES AND THE BEST STRATEGIES FOR US TO IMPLEMENT THOSE PRIORITIES BOTH HELPFUL TO US. SO WE CAN CIRCLE BACK TO ISSUES LATER. THANKS FOR BEING HERE. >> CAN I MAKE ONE COMMENT? >> TEN SECONDS. >> JUST IN RELATIONSHIP TO WHAT YOU SAID ABOUT ELECTROCONVULSIVE THERAPY I WOULD SAY SOMETHING QUICKLY IN TEN SECONDS I THINK THAT THE PROCEDURE AS PERFORMED IN 2013 IS VASTLY DIFFERENT FROM WHAT WAS PERFORMED IN 1970s. ANYONE WHO THINKS ECT LOOKS IN ANY WAY BAD OR HARMFUL OR PUNISHING SHOULD WATCH A PROCEDURE AS IT IS DONE NOW IN THIS COUNTRY. THERE ARE VIDEO LINKS, I CAN SHOW YOU NOW IN TERMS OF ECT CAUSING DAMAGE. IF YOU DO A MEDICAL SEARCH OF THE PEER REVIEW LITERATURE THERE IS NO EVIDENCE OF THAT. THE HISTOPATHOLOGICAL STUDIES AND LONG TERM COGNITIVE STUDIES INCLUDING TWO FROM THE FRENCH ON ADOLESCENTS, SHOWING NO EVIDENCE OF BRAIN DAMAGE FROM ECT. HOWEVER THAT'S WHAT THE MEDIA WOULD LIKE. >> WE HAVE TO -- I DON'T THINK WE NEED TO SPEND TIME DISCUSSING ECT, IT'S A LITTLE OFF TOPIC FOR THE COMMITTEE. AS I SAY RATHER THAN TAKING TIME NOW, LET'S FILTER THOSE THROUGH SUSAN AND GET BACK TO THE EXPERTS GIVEN WHERE WE ARE WITH OUR TIME AND NOTING THERE ARE LOTS OF OTHER PEOPLE THAT TRAVEL AD LONG WAY TO TALK TO US I WANT TO MAKE SURE WE MOVE ON AND GIVE THEM THE OPPORTUNITY TO MEET WITH THE COMMITTEE SO WE'LL MOVE TO NEXT PART WHICH HAS TO DO WITH THE REPORT FROM THE MEETING THAT WAS HELD LATE IN MARCH OF THIS YEAR ON ENVIRONMENTAL EPIGENETICS. SO I'LL INTRODUCE ALYCIA HALLADAY FROM AUTISM SPEAKS AND JILL ESCHER WHO SUPPORTED THIS THROUGH THE ESCHER FUND FOR AUTISM. >> THANK YOU TOM AND SUSAN ALLOWING US TO COME AND PRESENT. THIS PARTICULAR PRESENTATION SUSPECT MEANT TO BE A INSTRUCTIONAL GUIDE OR ANY SORT OF RESEARCH REVIEW OF THE ROLE OF ENVIRONMENT EPIGENETICS AND AUTISM, WHAT WE WANT TO DO IS DESCRIBE THE MEETING, MARCH 22 AND 23RD THIS YEAR. I KNOW MANY PEOPLE IN THIS ROOM WERE ACTUALLY PLANNING ON ATTEND ING. A WEEK BEFORE THE MEETING WAS HELD. SO THERE'S PEOPLE WHO SOME IN THIS ROOM PLANNING ON ATTENDING BUT IN FACT COULDN'T BE THERE IN PERSON. JILL AND I WILL SPLIT 20 MINUTE TIME POINT, TRY TO END EARLY SO WE CAN HAVE TIME FOR QUESTIONS AND ANSWERS. I'M GOING TO FOCUS MORE ON THE MEETING ITSELF. JUST TO GIVE A LITTLE HISTORICAL CONTEXT HERE AND I KNOW AMY FINEBERG AND SIN CINDY LAWLER TALKED ABOUT THE ROLE OF EPIGENETICS AND AUTISM BUT P FOR HISTORICAL CONTEXT, THESE ARE TWO GENETICALLY IDENTICAL MICE, THEY HAVE DIFFERENCES IN THEIR METHYLATION PATTERNS. THE YELLOW MICE OBVIOUSLY IS OBESE AND IS YELLOW AND THE BROWN MICE IS NOT OBESE, IT ALSO HAS DIFFERENT LEVELS OF METHYLATION PATTERNS WHERE YELLOW MOUSE HAS LOWER LEVELS OF METHYLATION. INTERESTINGLY, THESE PHENOTYPES CAN BE INDUCED OR PREVENTED THROUGH ENVIRONMENTAL EXPOSURES. BPA THAT CAN BE REVERSED OF SUPPLEMENTATION WITH FOLIC ACID. FROM EPIDEMIOLOGICAL PERSPECTIVE WE LOOK AT EPIGENETICS AN DISEASE THROUGH -- THIS CAME FROM A RECENT TIME MAGAZINE STORY LOOKING AT MULTI-GENERATIONAL EFFECTS OF DUTCH POTATO FAMINE. SO NOT ONLY LOOKING AT THE FIRST GENERATION BUT THE SECOND GENERATION AS WELL. WE ALREADY KNOW THERE'S WELL ESTABLISHED LINKS BETWEEN ENVIRONMENT AND EPIGENETIC EXPRESSION. THERE HAS NOT BEEN UNTIL RECENTLY A MEETING THAT FOCUSED IN ON AUTISM, THE KEYSTONE SYMPOSIUMING FOCUSED ON ENVIRONMENTAL EPIGENETICS AND DISEASE AND THE MEETING THAT THE CHN HELD IN 2012 AS WELL AS BOOKS HAVE ALL SHOWN A STRONG LINK BETWEEN ENVIRONMENT EPIGENETICS AND DISEASE. SO REALLY WHEN WE THINK ABOUT EPIGENETICS AS THE WAY IN WHICH GENES AND ENVIRONMENT ENTERP ACT, THERE ARE KEY POINTS TO MENTION. DNA METHYLATION IS THE MECHANISM I'LL GET TO THAT IN A FEW SECONDS. MORE EPIDEMIOLOGY STUDIES HAS ALLOWED RESEARCHERS EXPOSURES IN OUTCOME AND AS WELL AS EPIGENETICS AN OUTCOME. SO MOST LOOKED AT FIRST GENERATION SO THE CHILD PRE-NATAL OR POSTNATAL EXPOSURE TO CHILD. MULTI-GENERATIONAL EXPOSURES. SO WHEN YOU THINK MULTI-GENERATIONAL, THAT'S BACK TOM THE GRANDCHILD, THERE'S ANIMAL MODELS ABLE TO LOOK AT GREAT GRANDCHILDREN AN GREAT GREAT GRAND CHILDREN. THERE ARE A FEW DISORDERS OR DISEASES THAT HAVE SHOWN A STRONG LINK BETWEEN THE INTERSECTION BETWEEN USING EPIGENETICS AS THE INTERSECTION. MOSTLY IN CANCER, ASTHMA AND NEURODEVELOPMENTAL DISORDERS BUT UNTIL RECENTLY AUTISM HADN'T BEEN ADDRESSED. SO ONE OF THE STRONGEST WAYS TO LOOK AT EPIGENETICS IN AUTISM IS USE OF TWIN DESIGN. THIS WAS UNFORTUNATELY A RELATIVELY REALLY UNCOMMENTED PAPER MOLECULAR PSYCHOLOGY LAST YEAR BY ROBERT PULLMAN AND JONATHAN MILLS GROUP LOOKING AT THE TWIN COHORT IN THE UK. THEY LOOKED AT MONOZYGOTIC TWINS DISCORDANT FOR AUTISM AND AUTISM SPECIFIC TRAITS. THEY FOUND MORE THAN 50 DIFFERENCIALLY METHYLATED REGIONS OF BETWEEN TWO IDENTICAL TWINS AND THEY CORRELATEED BETWEEN DIFFERENT PARTICULAR SYMPTOMS OF AUTISM SO THEY USE THE CATS, SOCIAL INTERACTION SYMPTOMS REPETITIVE SYMPTOMS AND SOCIAL RECIPROCITY SYMPTOMS SO THIS IS THE STRONGER PAPER TO DATE TO SHOW THE ROLE OF EPIGENETICS IN ETIOLOGY OF AUTISM. SO THE GOAL OF THE ENVIRONMENTAL EPIGENETICS AND AUTISM SCIENTIFIC CONFERENCE HELD MARCH 22 AND 23RD, EARLIER THIS YEAR, WAS TO NOT ONLY BE A FORWARD THINKING MEETING SO THINKING WHERE ARE THE GAPS WHAT RESEARCH CAN WE DO TO IDENTIFY GAPS, WHAT DO WE KNOW, WHAT DO WE NEED TO KNOW TO MOVE FORWARD. WHAT ARE SOME OF THE TOOLS THAT NEED TO BE DEVELOPED OR UTILIZED IN THE FIELD. BUT ALSO WE WANTED TO CREATE A WAY TO HAVE VIDEO LIBRARY FROM THE PRESENTATIONS THAT WERE GIVEN SO THEY CAN BE REFERENCED AND ATTEND THE MEETING. THERE IS A MEETING WEBSITE WHICH I KNOW CIRCULATED PRIOR TO THE LIST OF MATERIALS IN THE IACC WEBSITE GENETICS.ORG AND IT HAS VAST SET OF SET OF EPIGENETICS SO ON THE PLANNING COMMITTEE WAS JILL AND MYSELF, HOSTED AT THE MINE INSTITUTE AND IF ANYONE HAS HAD A MEETING AT THE MINE INSTITUTE I HIGHLY RECOMMEND THEY WERE GREAT. DAVID AMAROL AND ALSO JANINE L ARCSALLE FROM UC DAVIS WHO USES ANIMAL MODELS AND MOLECULAR MECHANISMS TO STUDY GENE ENVIRONMENT INTERACTIONS AND EPIGENETICS. WHO SPOKE LAST YEAR ON THIS TOPIC.j AND DAVID CRUISE WHO IS AN EVOLUTIONARY BIOLOGIST AT UNIVERSITY OF TECH TECH. SO ESSENTIALLY HERE ARE PICTURES FROM THE MEETING. WE REALLY WANTED TO TALK ABOUT THE BACKGROUND AND MECHANISM IT IS ROLE OF THE GERM LINE WHICH HAS BEEN UNADDRESSED IN AUTISM BUT HAS OF COURSE BEEN ADDRESSED IN OTHER DISORDERS. WE HAD A SESSION ON NEURODEVELOPMENT, ROLES OF EPIGENETICS IN NEURAL DEVELOPMENT AND SOME EXAMPLES FROM THE FIELD OF PARTICULAR INTEREST AN THOSE POINTD TO ENDOCRINE DISRUPTTORS. WE ALSO WANTED SOME TIME ASIDE FOR ETHICAL ACCORDANCES, WE HAD AT THE END OF THE MEETING WE HAD TIME FOR FOCUSED TOPICS. THOSE INCLUDE USE OF EPIDEMIOLOGY STUDIES MOLECULAR BIOLOGY TECHNIQUES AN ANIMAL MODEL STUDIES HOW THEY CONTRIBUTE. THERE ARE MORN EMERGING THEMES FROM THE PRESENTATION BUT I TRIED TO CONDENSE THEM INTO A SHORT -- KIND OF A SHORT PRESENTATION HERE. SO THE FIRST WAS WE NEED MORE EMPHASIS ON GENES AND THE ENVIRONMENT, NOT GENES VERSUS THE ENVIRONMENT. I HEAR THIS OVER AND OVER AGAIN ABOUT THE LACK OF -- THE LACK OF STRONG DATA SUPPORTING A SINGLE GENE FOR AUTISM, OR MULTIPLE SINGLE GENES FOR AUTISM OR A SINGLE ENVIRONMENTAL FACTOR. AND I THINK SCIENCE HAS COME TO A PIPE NOW WHERE WE AGREE THERE IS A COMPLEX INTERACTION BETWEEN GENES AND THE ENVIRONMENT CONSIDERED IN RESEARCH THINKING ABOUT ENVIRONMENTAL FACTORS AND GENETIC FACTORS. WE NEED MULTIPLE TIME POINTS ON THESE STUDIES AND PROSPECT ACTIVE LONGITUDINAL STUDIES, IDEAL WAY TO LOOK AT THEM. DIFFERENT TISSUES, PEOPLE THOUGHT ABOUT THE USE OF ALL SORTS OF THINGS THAT CAN BE DONE WITH BRAIN TISSUE, THAT'S NOT FEASIBLE SO WE NEED TO THINK ABOUT THE USE OF OTHER SURROGATE MARKERS. THINK ABOUT EXPOSURES, ISOLATING A PARTICULAR EXPOSURE ITSELF, THAT CAN BE DAUNTING BECAUSE YOU MAY BE SEEING THE TREES THROUGH THE FOREST, WE NEED TO THINK ABOUT DIVERSITY OF EXPOSURES AN THOSE THAT LOOK AT A BROAD ARRAY OF MECHANISMS. Z WE CAN REALLY LEARN FROM DISORDERS OR OTHER DISEASES THAT HAVE ESTABLISHED OR HAVE BEEN ABLE TO REALLY SHOW A MECHANISTIC LINK BETWEEN EPIGENETICS, THE ENVIRONMENT AND DISEASE OF INTEREST CH. THE SECOND POINT APPEARED FROM A PAPER PUBLISHED BY SENIOR AUTHOR WAS JOHNS HOPKINS GROUP BUT INVOLVED A SWEDISH COHORT OF RHEUMATOID ARTHRITIS PATIENTS. EPIGENETICS MAYBE THE MODERATOR OF GENE ENVIRONMENT INTERACTIONS. SO INSTEAD OF THINKING ENVIRONMENT AND INSTEAD OF THIS GOES ALONG WITH THE FIRST POINT THINKING ENVIRONMENT COMING SEPARATELY AS GENETICS, IN FACT, EPIGENETICS CAN BE THE MODERATOR OF HOW ENVIRONMENT AFFECTS GENETIC EXPRESSION. THIS STUDY WAS ABLE TO USE SOME SPECIFIC ALGORITHMS TO SHOW IN FACT THERE'S A FEW DIFFERENTIALLY METHYLATION POINTS, THOUGH ARE THE TOP CIRCLES THAT AFFECT EXPRESSION OF GENES MHC GENES ON CHROMOSOME 6. THE THIRD POINT JILL WILL GET TO IS HIGHWAY PATROL WE THINK LIFE COURSE WE WANT TO THINK ABOUT ADULTS WITH WITH AUTISM AND THEIR NEEDS. WHEN WE THINK ABOUT THE LIFE COURSE FROM ETIOLOGICAL PERSPECTIVE WE SHOULD BE GOING BACK TO THINK ABOUT THE GERM LINE. THIS IS A FIGURE THAT I ACTUALLY STOLE FROM FREDERICKA PEREREZ PUBLICATION, EFFECTS OF DIESEL FUEL ON EPIGENETICS AND P POINTED OUT THAT IN FACT YOU THINK ABOUT MOTHER EXPOSURE FETUS EXPOSURE BUT YOU RARELY THINK ABOUT THE GERM LINE EXPOSURE OR THE REPRODUCTIVE CELLS ACTUALLY PART OF THAT EXPOSURE DURING GESTATION. MANY MULTI-GENERATIONAL EFFECTS STUDIES ARE FINDING AFFECTS IN OTHER DISEASES AND WE PROBABLY NEED TO INCORPORATE ASSAYS TO LOOK PAST JUST PREGNANCY. THE OTHER THING IS TWO TYPES ENVIRONMENTAL EPIGENETICS, ONE CONTEXT DEPENDENT ON THE EXPOSURE ITSELF OR ONE THAT IS DEPENDENT ON GERM LINE DEPENDENT. IN REAL LIFE YOU'RE LOOKING AT BOTH. SO IN AN ANIMAL MODEL YOU MAYBE ABLE TO PULL APART THE TWO BUT REAL LIFE YOU'RE LOOKING AT BOTH. GIVEN RECENT INTEREST IN ART AND P PUBLICATION THAT CAME OUT, YOU MAY NEED TO THINK ABOUT WHETHER OR NOT WE LOOK AT THE RIGHT PLACE. IF WE LOOK AT ART AS LINK TO AUTISM, WE WILL BACK THAT UP AND THINK ABOUT THINGS LIKE FERTILITY, REPRODUCTIVE HEALTH AND THINGS THAT THAT. ENDOCRINE DISRUPTERS, SHOWN TO PRODUCE CHANGES GERM LINE MEDIATED CHANGING IN DEVELOPMENT. FINALLY WHICH PROBABLY ISN'T ANY SURPRISE TO ANYONE IS WE NEED -- WE CAN'T BE DOING THIS IN EPIDEMIOLOGY, WE NEED TO INCORPORATE ANIMAL MODELS, MOLECULAR APPROACHES GENETICS AND TOXICOLOGY, ANOTHER THING THAT WAS QUITE STRIKING IS THE ROLE OF ENVIRONMENTAL EPIGENETICS ON SEX DIFFERENCES. I'M NOT HERE TO ADVOCATE OR SAY THAT I DO KNOW IT'S AN UNDERSTUDIED FIELD ACROSS AUTISM BUT I KNOW THERE ARE MANY RESEARCHERS WHO ARE LOOKING AT SEX DIFFERENCES AN THINKING THE ROLE OF EPIGENETICS IN THE -- BOTH THE DIFFERENCE IN THE RATE AND ALSO SYMPTOMS THAT ARE PRESENTED. I WANT TO THANK EVERYONE THAT ATTENDED THE MEETING. JILL OF COURSE BUT THEN ALSO DAVID, BOTH DAVIDS, AMAROL AND CRUISE. DANNY FALLON AND JANINE WILL SAL ON THE STEERING COMMITTEE FOR THE MEETING AND HERE ARE THE OTHER PEOPLE THAT WERE AT THE MEETING WE TRIED TO MAKE SURE THERE WERE PEOPLE WITHIN THE FIELD OF AUTISM WHO COULD SPEAK SPECIFICALLY ABOUT THE UNIQUENESS OF AUTISM BUT THEN WERE OUTSIDE THE FIELD AS WELL. AND I WANT TO TURN IT TO JILL WHO IS GOING TO TALK ABOUT HOW THIS IMPACTS FAMILIES WITH AUTISM. IN ADDITION TO INTERVENTIONAL MODEL POTENTIALLY PREVENTION. SO GO AHEAD, JILL. >> THANK YOU SO MUCH ALICIA, GLAD TO HAVE THIS OPPORTUNITY TO SPEAK TO YOU ABOUT OUR SYMPOSIUM AN SHARE WITH YOU SOME INFORMATION THAT I THINK IS HIGHLY RELEVANT TO AUTISM AN MAY IN FACT SHED SOME LIGHT ON INCREASING RATES OF ASD AND OTHER NEURODEVELOPMENTAL ABNORMALITIES WE SEE TODAY. THE IDEA THAT COMES FROM EPIGENETICS THAT MAYBE RELEVANT TO AUTISM, THERE'S SEVERAL BUT THIS IS THE ONE WE'RE FOCUSING ON HERE, EPIGENETICS IS LIKE THIS FINE TUNING OF OUR GENETIC CODE BUT WHAT HAPPENS WHEN THAT FINE TUNING PROCESS GOES AWRY WHEN INSTRUCTION BOOK IS DAMAGED IN SOME WAY. IT COULD BE NOVEL EXPOSURE FROM RECENT PAST HAVE IMPAIRED THE DEVELOPMENT OF GERM LINE, OUR SPERM AN EGG. CONTRIBUTING TO THE RISING INCIDENCE OF PATHOLOGY SEEN IN OUR CHILDREN. IT'S A SIMPLE IDEA ACTUALLY APPROXIMATE IT DOVE TAILS WELL WITH WHAT WE HAVE BEEN SEEING FROM ASD RESEARCH, WE SEE EVIDENCE FOR HERITABILITY OF AUTISM. BUT WE DON'T SEE EVIDENCE FOR MENDELIAN GENETIC INHERITANCE COMING FROM PREVIOUS GENERATIONS. WE SEE A CRAZY QUILT OF DE NOVO MUTATIONS AN CHANGES IN GENE EXPRESSION. IN CHILDREN THAT'S PERPLEXING AND MYSTERIOUS. SO THAT PART REALLY ISN'T NEW BUT THE PART THAT IS KIND OF NEW IS EXPOSURES THAT DON'T GO BACK VERY FAR IN HISTORY, MAY HAVE SOMETHING TO DO WITH CHANGES WE'RE SEEING IN A SUBSET. OBVIOUSLY I'M ONE THAT BELIEVES AUTISM HAS MANY CAUSES. WE'RE JUST TALKING ABOUT ONE POTENTIAL SUBSET. SO I WANT LIKE TO TALK ENVIRONMENTAL EXPOSURES. WE THINK ABOUT SMALL POLLUTION, WATER POLLUTION, ENDOCRINE DISRUPTERS LIKE PESTICIDES, BPA, OTHER TOXIC CHEMICALS BUT THERE'S ANOTHER CLASS OF EXPOSURES THAT I THINK HAS BEEN WHOLLY OVERLOOKED NOT ONLY IN AUTISM RESEARCH BUT IN MANY OTHER FIELDS OF RESEARCH. THAT IS PRE-NATAL PHARMACEUTICAL CRAZE AT THE POST WARRER RA. FROM THE 50s THROUGH TO TODAY BUT MOSTLY PEEKENING THE 60s, THERE WAS INCREDIBLE ENTHUSIASM FOR THESE MARKETED PHARMACEUTICALS. SO THIS IS THE FOUR CATEGORIES OF THESE KIND OF DRUGS, THE SYNTHETIC HORMONE DRUGS SEDATIVE HYPNOTIC WEIGHT LOSS DRUGS, MANY OTHERS. AND NONE OF THESE WERE BENIGN. SOME WERE IN FACT QUITE CATASTROPHIC. YOU CAN SEE IS A LIDMIDE IS ONE. I DON'T HAVE TO TELL YOU THAT STORY. DES WAS ANOTHER. MANY MILLIONS OF FETUSES EXPOSED TO DES. CAUSING NOW WE KNOW MULTI-GENERATIONALLY PATHOLOGIES IN THE AFFECTED OFFSPRING AND EVEN GRAND OFFSPRING. THESE WERE NOVEL EXPOSURES WITH NO BIOLOGICAL PRECEDENT COLLABORATIVE PERINATAL PROJECT MORE THAN 50,000 PREGNANCIES. THE POINT IS TO DRAW YOUR ATTENTION TO THE FACT THAT A SUBSTANTIAL PERCENTAGE OF PREGNANCIES INVOLVE USE OF DRUGS THIS STUDY SHOWED HALF THE PREGNANT WOMEN IN THIS TIME PERIOD WERE FOUND TO HAVE TAKEN AT LEAST TWO TO FOUR DRUGS DURING EARLY PREGNANCY. THAT SAID, DRUG USE VARIED WIDELY BY GEOGRAPHY, BY DEMOGRAPHIC, SOCIO ECONOMIC STATUS THE AND MEDICAL PRACTICE. SO WHY DOES THIS HISTORY MATTER? THIS WAS A LONG TIME AGO, TALKING ABOUT 50s AN 'OF 0s AND '70s. HERE WE ARE IN 2013, THAT HAPPENED A LONG TIME AGO. WHY WOULD ALL THIS OLD NEWS MATTER TO US TODAY? IT MATTERS BECAUSE SCIENCE IS RAISING STRONG RED FLAGS ABOUT THE MULTI-GENERATIONAL EFFECTS OF EXPOSURES. THESE ARE THREE EXAMPLES, I COULD HAVE HAD TEN SLIDES ON THIS WE KNOW ENDOCRINE CHEMICALS AND OTHER CHEMICALS INDUCE MOLECULAR CHANGES SUCH AS DNA METH HIS AND HISTONE MODIFICATION. MANY LAYERS OF EPIGENETICS, BEST STUDIED. THE EPIGENOME IS VULNERABLE DURING EARLY DEVELOPMENT. WHEN DID OUR EGGS DEVELOP? WE -- LADIES WE WERE BORN WITH ALL OF OUR EGGS. OUR EGGS DEVELOP BASICALLY IN FIRST HALF OF GESTATION, WE WERE THIS BIG, TINY AND FOR MALES IT'S SIMILAR DIFFERENT PROCESS OF REPRODUCTIVE CELL DEVELOPMENT BUT YOU'RE BORN WITH ALL THE STEM CELLS WHICH GO ON TO BECOME YOUR MATURE SPERM LATER IN LIFE AFTER PUBERTY. THE MOST VULNERABLE PERIOD IS THAT PERIOD THIS SMALL AND GERM CELLS ARE DEVELOPING. WE ALSO KNOW HERE AT THE BOTTOM ENDOCRINE DISRUTTERS ARE SHOWN TO EXHIBIT TRANSGENERATIONAL EFFECTS RELEVANT TO ASD FROM ANIMAL MODELS. SO WE SEE HINTS WHY THIS MAYBE IMPORTANT. WE JUST TALKED ABOUT THE SECOND POINT THAT THE FETAL GERM CELLS ARE VULNERABLE. BUT THAT'S NOT THE ONLY PERIOD OF VULNERABILITY. PRE-CONCEPTION FERTILIZATION, EARLY EMBRYO. EPIGENETIC VULNERABILITY AND SPEAKER MAT GENESIS THROUGH THE MALE LIFETIME AND OTHERS. ANOTHER POINT IS IT NOT COIN SIDE WITH WINDOW OF SUSCEPTIBILITY. THERE'S SOME CHEMICALS THAT STAY IN FATTY TISSUES FOREVER. YOU MIGHT HAVE A KID AT 30 BUT EXPOSURE MIGHT BE STILL RELEVANT. IT'S COMPLEX. AS ALYCIA MENTIONED, THE PREGNANCY EXPOSURE CAN AFFECT THREE GENERATIONS AT ONCE. THIS IS A PARADIGM SHIFTING IDEA. BECAUSE NOW WE KNOW THAT EXPOSURES THAT HAPPENED A WHILE AGO, HAVE DOWNSTREAM EFFECTS AFFECTING GRANDCHILDREN OR LATER GENERATIONS, WE KNOW SOMATIC CELLS, P BODY CELLS ARE AFFECTED DIFFERENTLY THAN OUR GERM CELLS. YOU MAY SEE DIFFERENT GENERATIONS. THERE'S ALSO THE IDEA LATENCY PERIOD IF EXPOSED TO SOMETHING IN UTERO, YOU MAY HAVE A LATENT BIRTH DEFECT IN YOUR GERM CELLS THAT DOESN'T MANIFEST UNTIL YOUR KIDS ARE BORN. I DEFINITELY THINK SO, WHICH IS WHY I'M HERE. I P I'M GOING TO OFFER MOIST AND MY CHILDREN ADS CASE STUDY NUMBER 1 IN MULTI-GENERATIONAL HYPOTHESIS. I WAS BORN IN 1965, IN LOS ANGELES, I STILL HAVE THE SAME HAIRCUT. I DEVELOPED I WOULD SAY PRETTY NORMALLY, SOME MIGHT DISPUTE THAT. WENT TO GRADUATE FROM COLLEGE AND LAW SCHOOLAND SUCCESSFUL IN MY CAREER. SO KIND OF NORMAL. PSYCHOLOGICAL CONDITIONS IN MY ANCESTOR EXTENDED FAMILY OR HUSBAND'S. WE HAVE THREE KIDS AND NORMAL CONCEPTION, NORMAL PREGNANCY, NO UNUSUAL EXPOSURE, NO GENETIC ANOMALIES AND WE DID MICROARRAYS LOOKING FOR COPY NUMBER VARIATIONS, DELETIONS, NOTHING. THEY'RE PHYSICALLY GORGEOUS, VERY ROBUSTLY HEALTHY. WONDERFUL KIDS. TWO HAVE HIGHLY INCAPACITATING ABNORMAL NEURAL DEVELOPMENT LABELED IDIOPATHIC AUTISM BASICALLY SAYING WE DON'T KNOW WHY THERE ARE BY REASONABLE MEASURE CATASTROPHICALLY NEURAL DEVELOPMENTALLY DISABLE AND NEED LIFE LONG 24/7 CARE. WHY DID THIS HAPPEN? WHY MIGHT THIS BE HAPPENING TO A SUBSET OF KIDS LIKE THEM? HERE IS AN IDEA. VERY REACCEPTLY THROUGH A SUCCESSION OF COMPLETE MIRACLES THAT I DON'T HAVE TIME TO REAL AT THE MOMENT, I STUMBLED UPON SHOCKING INFORMATION. THAT SHOCKING INFORMATION WAS DETAILED RECORDS OF MY PRE-NATAL EXPOSURE FROM 1965. TO SAY OBTAINING THESE RECORDS IS RARE IS AN UNDERSTATEMENT. I ASK AND ASK IT NOW IS ANYBODY IN THIS ROOM SEEN THEIR PRE-NATAL RECORDS? NO. I STILL VICE PRESIDENT FOUND ANYBODY ELSE. I DON'T KNOW WHY ME, I DON'T KNOW. BUT THESE LANDED ON MY LAP. IT TOOK A WHILE BUT WITH HELP OF RESEARCHERS AND PHYSICIANS, I WAS ABLE TO DECIPHER THEM. WHAT DO THE RECORDS SAY. IT SAID I HAVE BEEN EXPOSED TO A VARIETIABLE BARRAGE OF SYNTHETIC HORMONE DRUGS FROM THE BEGINNING OF PREGNANCY THROUGH AT LEAST THE SECOND TRIMESTER. WHY WAS I EXPOSEDDED TO THESE FAKE PROJEST ROPES, CORTICOSTEROIDS FAKE ESTROGENS AND COUPLE OF OTHER THINGS. WHY? THIS WAS 1965, WHAT HAPPENED THEN THAT MAYBE ISN'T HAPPENING HERE OR HAPPENING DIFFERLY NOW? WHAT HAPPENED HEN IS A COUPLE OF THINGS. FIRST OF ALL, THESE -- THIS CATEGORY OF DRUGS WERE USED VERY, VERY HEAVILY IN PREGNANCIES THAT WERE CONSIDERED AT RISK FOR WHERE DOCTOR CONSIDERED THE WOMAN HABITUAL ABORTER, THAT WAS A TERM PREVALENT AT THE TIME. HABITUAL ABORTER WHO HAD TWO OR MORE PREVIOUS MISCARRIAGES CH EVEN -- I HOPE EVERYBODY KNOWS ABOUT DES ONE OF THESE QUOTE UNQUOTE ANTI-MISCARRIAGE DRUGS THAT DIDN'T WORK, I WAS NOT EXPOSED. THE DRUG THAT WAS MORE PREVALENT WERE PROJEST TINS -- FAKE PROGESTERONE DRUGS CH I WAS EXPOSED TO TWO IN ADDITION TO CORTICOSTEROIDS, A PREDNISONE KIND OF DRUG I WAS EXPOSED TO. SO WHY SHOULD WE CARE? AND ALSO IS THAT A LOT? YOU WERE EXPOSED TO 5,006,000 MILLIGRAMS OF SYNTHETIC HORMONES, WAS THAT A LOT? I LIKE TO COMPARE THAT TO BIRTH CONTROL PILLS TODAY. IT HAS .18-MILLIGRAM SYNTHETIC HORMONES. IF YOU WERE TO ADD A YEAR'S WORTH OF BIRTH CONTROL PILLS IT WOULD HARDLY RECOMMENDSER A BLIP -- REGISTER A BLIP. THE RESEARCHERS AT THE TIME MARKED ON -- SO I HAVE BEEN -- SMALL TAN GENERAL I HAVE BEEN RESEARCHED, I DIDN'T KNOW THIS WHEN I WAS 8 YEARS OLE BECAUSE I HAD BEEN SO HEAVILY EXPOSED TO THESE DRUGS WHICH IS PART OF THE REASON I FOUND THESE RECORDS SO I FOUND OUT VERY REACCEPTLY I HAVE BEEN SUBJECT MATTER RESEARCH STUDY. THIS WAS A MASSIVE AMOUNT OF EXPOSURE. REALLY IT'S AMAZING THAT I'M Q&A SAY DID THEY AFFECT MY EGGS. AND GIVEN THAT MILLIONS OF PEOPLE WERE EXPOSED TO THESE DRUGS AND TENS OF MILLIONS EXPOSED TO OTHER ENDOCRINE DISRUPTING DRUGS THESE ARE OVERT BUT OTHER DRUGS WERE HAD ENDOCRINE DISRUPTING AFFECTS AS WELL, DID IT EFFECT THE GERM LINE OR IS THE GERM LINE IMPENETRABLE, IMPERMEABLE, DIDN'T CHANGE OR WAS THE EFFECT NEGLIGIBLE? THE ANSWER IS WE NEED TO KNOW MORE. I DON'T PRETENT TO HAVE THE ANSWERS I THINK THIS IS AN INTERESTING AND INTRIGUING IDEA. WE NEED TO KNOW MORE AND CONSIDER THE POSSIBILITY THAT ENVIRONMENTAL FACTORS MAY HAVE WREAKED HAVOC ON OUR GERM CELLS. I THINK THE PRE-NATAL PHARMACEUTICALS ARE THE UP OF THE ICEBERG. 50s AN 60s AND 70s, WE HAD DDT, FLAME RETARDANTS PCBs, PERSISTENT DRUG POLLUTANTS. MANY OTHER CANDIDATES MATERNAL SMOKING, WAS ADDED MANY THISSER RA. RECREATIONAL DRUGS, AIR POLLUTION, NUCLEAR TESTING SUPERFUND SITES AND THROW IN BIRTH CONTROL PILLS SINCE THEY'RE ENDOCRINE DISRUPTERS. SO THAT'S THINGS TO THINK ABOUT IN TERMS OF POSITION SURES THAT COULD BE HAVING MULTI-GENERAL RATIONAL EFFECTS. WE RUN A PHILANTHROPY, WE KICK STARTED SOME PROJECTS TO TRY TO GET THIS HIGHth PSIS EXAMINED OFF THE GROUND. WE PICKED LOW HANGING FRUIT SO TO SPEAK AND HAVE -- HAVE WITH AUTISM SPEAKS FUNDD THE THE FIRST EPIDEMIOLOGICAL STUDY IN DENMARK LOOKING AT THREE GENERATIONAL EFFECTS OF SMOKING AND PHARMACEUTICAL USE FROM THE 60s. WE'RE INTERESTED IN PREVENTION AND ONE THING THAT'S NEAR AND DEAR TO ME IS THE IDEA WE KNOW THERE'S QUITE A BIT OF CONSENSUS THAT PRE-NATAL PHARMACEUTICAL USE EFFECTS HUMAN GERM LINES THAT NEVER HAS BEEN ON THE RADAR OF THE FDA. NO TESTINGFM< PROTOCOL, NO WARNING, IT'S NOT PART OF ANY WAY TO ASSESS SYSTEMATICALLY RISK OF EXPOSURE. SO TRYING TO GET THE GERM LINE -- THE MOST IMPORTANT CELLS IN OUR BODY ON THE RADAR OF THE FDA. WE HAVE THE SYMPOSIUM WE'RE SPONSORING INTO HISTORY WHICH IS HIDDEN HISTORY. WE WANT TO MAKE MEDICAL RECORDS MUCH MORE AVAILABLE TO ALL AMERICANS SO WE CAN ALL KNOW, I DON'T WANT TO BE THE ONLY PERSON IN AMERICA WHO KNOWS OWN PRE-NATAL EXPOSURE. I WANT EVERYONE TO KNOW AND LABORATORY STUDIES AS WELL. ALICIA AND I WERE WORKING WITH THE SYMPOSIUM CAME UP WITH RECOMMENDATIONS MORE BROAD RECOMMENDATIONS FOR RESEARCH. SHE TOUCHED ON IT, I WON'T GO INTO IT IN DETAIL BUT WE DO NEED A MULTI-FACETTED APPROACH TO LOOK AT THESE IDEAS ABOUT HOW THE ENVIRONMENT MAY HAVE AFFECTED OUR GENES AND MAYBE HAVING THESE DOWNSTREAM IMPACTS. THANK YOU SO MUCH. [APPLAUSE] >> THANKS TO BOTH OF YOU YOU MENTIONED AT THE BEGINNING THE WEBCAST IS AVAILABLE ONLINE SO PEOPLE WHO ARE INTERESTED CAN GO BACK TO THE ORIGINAL. WILL THERE BE A REPORT OUT FROM THAT MEETING THAT WE CAN GET ACCESS TO? >> WE SUBMITTED TO THE IACC A PDF FILE WHICH WAS A SUMMARY OF MAJOR THEMES OF THE CONFERENCE, IT'S NOT A SCIENTIFIC REPORT, NOT A LENGTHY DETAILED SCIENTIFIC REPORT BUT A SUMMARY. SO I RECOMMEND AT THIS TIME LOOKING AT THE SUMMARY AND GOING THROUGH THE VIDEOS ON THE WEBSITE. >> GREAT. OKAY. AGAIN, IN THE INTEREST OF TIME I'M SORRY, BUT I THINK WE SHOULD MOVE ON, I WANT MA I CAN MAKE SURE YOU HEAR THIS NEXT PRESENTATION BEFORE WE BREAK. WE WILL BE ABLE TO RECOVER SOME TIME OVER OUR LUNCH BREAK I'M SURE. LET ME INTRODUCE PORTIA OVER SEN WHO WILL TALK ABOUT NON--- IVERSEN. MOST OF YOU KNOW PORTIA SHE WAS CO-FOUNDER OF CURE AUTISM NOW. ONE ORIGINAL FOUNDERS OF MFAR AS INTERNATIONAL MEETING. SHE'S BEEN IN THE LAST FEW YEARS A MAYOR PROPONENT OF THE IDEA TO STUDY NON-VERBAL AUTISM, SOME COMES UP IN STRANGE SON AND THROUGH THE DECART STEW WHICH SHE FOUNDED WHICH IS AN ONLINE COMMUNITY FOR PEOPLE WHO ARE INTERESTED IN THIS TOPIC. IT'S A DELIGHT, I'M SORRY WE GIVE YOU STARRED SO LATE AND I PROMISE TO GIVE YOU THE TIME YOU NEED AND WE'LL BREAK AROUND ONE O'CLOCK. >> THANK YOU FOR HAVING ME HERE TODAY. I'M HERE AS TOM SAID, I THINK HE MAY HAVE SAID QUIT A FEW THINGS IN MY TALK SO I MIGHT SKIP THEM. I'M VERY INTERESTED IN NON-VERBAL AUTISM. I HAVE A SON NOW 21, CAN YOU HEAR ME OKAY? WHO HAS NON-VERBAL AUTISM. HE'S VERY SEVERELY AFFECTED BY AUTISM. HE HAS A LOT OF MOTOR PROBLEMS AND A LOT OF CHALLENGING BEHAVIORS AN GIANT MOOD SWINGS. JUST TELL YOU A ALMOST BIT ABOUT ME AND MY LIFE AND MY INVOLVEMENT, THIS WHAT YOU SEE HERE IS MY SON WHEN HE WAS NINE. , ON THE LEFT AND A FRIEND OF OURS (INDISCERNIBLE) WHO AT THE TIME WAS IN HIS EARLY TEENS. I'M GOING TO TALK TODAY IN A VERY GENERAL WAY BUT I ALSO HOPE THE THINGS I'M SAYING WILL MAKE AN IMPRESSION IN TERMS OF RESEARCH DOLLARS. WE HAVE HAD A TOLL OF THREE MEETINGS SO FAR INVOLVING NON-VERBAL. THE FIRST TWO SPONSORED BY AUTISM SPEAKS AND THEY WERE VERY USEFUL GETTING A GOOD SIZE GROUP OF PEOPLE INTERESTED IN A SUBJECT AND UP SPEED SO THEY WE WERE COMING FOR THE FIRST TIME EVER. AND THEN THE COMMUNICATIONS INSTITUTE HERE ALONG WITH NIMH SPONSORED A MEETING IN SPRING OF 2010, A TWO DAY MEETING ON NON-VERBAL AUTISM. AND PUT OUT AN RFA. SO THAT IS WHAT HAS HAPPENED SO FAR. IN SO MANY WAYS NON-VERBAL AUTISM REMIND ME WHERE AUTISM BUT WHEN OUR SON WAS DIAGNOSED ALMOST 20 YEARS AGO. WE COULDN'T FINE OUT WHAT WAS GOING ON WITH AUTISM, THERE WAS SO LITTLE GOING ON, IT WAS SO MIXED IN DIFFERENCE INSTITUTES WHAT LITTLE THERE WAS. I REMEMBER ED COOK HAD -- IS A LONG TIME AUTISM RESEARCHER HAD AN ADULT BROTHER WITH AUTISM AND HE SAID THE FUNDING WAS SO BAD DURING THAT TIME THAT THE ONLY REASON HE WAS IN THE FIELD BUT BECAUSE I PROBABLY SHOULDN'T SAY THIS BUT HE WAS TAKING A LITTLE HERE AND THERE FROM OTHER DISORDERS BUT TOGETHER SOMETHING BECAUSE HE WOULDN'T GET ANY FUNDING. THIS IS MY HUH JOHN AND MY SON. I GO THROUGH A QUICK TIME LINE BECAUSE THOUGH TOM COVERED IT WE STARTED CURE AUTISM NOW, AROUND THE SAME TIME AS NAR STARTED AND WAS ONE OF THOSE THINGS SPONTANEOUS THINGS THAT HAPPENED, THERE WAS ALMOST NO AUTISM RESERGE GOING ON AT THE TIME IT WAS A LITTLE OVER BUDGET, OVER 5 MILL BY ASKING ACCOUNTANTS AT EVERY INSTITUTE WHAT THEY CONSIDER AUTISM RESEARCH. INTERESTINGLY I FIND MYSELF DOING THE SAME THING NOW WHEN I AM TRYING TO DISCOVER FOR YOU WHAT IS GOING ON IN NON-VERBAL AUTISM RESEARCH. I HAVE A VERY DIFFICULT TIME TELLING YOU AND YOU'LL SEE AS WE GO ALONG. WE ALSO STARTED THE AUTISM GENETIC RESOURCE EXCHANGE WHICH IN MY OPINION WAS ONE OF THE MOST IMPORTANT THINGS THAT CURE AUTISM NOW DID BECAUSE IT ALLOWED RESEARCHERS FROM ALL KINDS OF RELATED FIELDS TO COME IN TO THE FIELD OF AUTISM. AND NOT HAVE TO WORRY ABOUT SPENDING A TON OF MONEY ON COLLECTING PATIENTS. AND THEY CAN JUICE THEIR EXPERTISE OR KNOWLEDGE IN RELEVANT OTHER FIELDS. AND MOVE INTO DOING AUTISM RESEARCH. ALSO THE IDEA OF INTERNATIONAL MEETING OF AUTISM RESEARCH, HARD TO BELIEVE THERE WASN'T A SINGLE PROFESSIONAL MEETING UNTIL THIS ONE WAS STARTED IN 2000 THAT WAS JUST ABOUT AUTISM SO YOU HAVE PARENTS PUTTING ON CONFERENCES, YOU HAVE UNIVERSITIES PUTTING ON CONFERENCES, AND THERE WAS NO PLACE LIKE SOCIETY FOR NEUROSCIENCE WHERE EVEN GOES EVERY YEAR AND EVERYBODY WOULD TALK TO EACH OTHER SO I FIGURE THIS MEETING SPED THINGS UP A LOT TOO. AND AHEAD OF ITS TIME WE STARTED THE INNOVATIVE TECHNOLOGY FOR AUTISM INITIATIVE. THE iPAD HAD NOT BEEN INVENTED YET WHICH I THINK HAS BROUGHT THINGS LIGHT YEARS AHEAD IN TERMS OF COMMUNICATION. FOR NON-VERBAL AUTISTIC. I HAVE TWO VIDEOS ONE IS ABOUT TEN MINUTES, ONE IS FIVE MINUTES SO SHOULD I GO AHEAD SHOW THEM GIVEN THE TIME WE HAVE? >> LET ME GET A SENSE FROM THE GROUP, BECAUSE I SEE HEADS NODDING, I HAVE TO CONFESS, I HAVE SEEN THESE AND I THINK THEY'RE VERY COMPELLING SO I WOULD WANT YOU TO SHOW THEM BUT -- >> THIS FIRST ONE WE DOPE SEW A VIDEO THAT IS AN AUTISTIC INDIVIDUAL FROM UNDER ONE YEAR OLD TO TEENS IN LESS THAN TEN MINUTESFUL WE SEE ONE PERIOD OF TIME. >> LET'S DO THIS. >> OKAY. >> BECAUSE I THINK IT ALSO SHOWS YOU PROGRESSION OF WHAT CAN HAPPEN WITH A NON-VERBAL CHILD. CAN WE TURN THE LIGHTS DOWN? IS IT POSSIBLE? >> IT WASN'T TOO LONG -- WE WERE SO HAPPY -- >> CAN YOU BOOT UP THE SOUND, PORTIA? >> I'M GOING TO TRY. OR MAYBE TAKE IT THROUGH THIS YOURSELF. IT'S HARD TO HEAR. >> (INAUDIBLE) PLAYING. HERE I AM, THIS IS ABOUT FOUR MONTHS OLD, FIVE MONTHS OLD. S FROM TRYING TO GET ME TO ROCK HIM ON MY FOOT. I THINK I SEE SOME SOCIAL EXPRESSION HERE. >> I'M SHOWING A LOT OF SOCIAL. I'M TALKING TO A LITTLE GIRL. I THINK WE HAVE EARLY EVIDENCE OF JOINT ATTENTION BECAUSE HE HAS (INAUDIBLE) WHAT'S GOING ON. ASYMMETRICAL LIKE TEITELBAUM DESCRIBES, WORKING WELL TOGETHER THESE ARE SOUNDS ADULTS CAN NO LONGER MAKE. >> WE HAVE A LOT OF VERBAL AND SOCIAL THAT WENT BY THE WAYSIDE. DAD COMES IN THE ROOM, ORIENTS TOWARDS DAD. >> TRYING TO GET A LITTLE ATTENTION. >> LOOKING GAG BACK NOW TO HOME NO -- LOOKING BACK, HE DID NOT LOOK AUTISTIC EARLY ON. WE BEGAN TO NOTICE SOMETHING BUT WRONG BETWEEN HIS FIRST BIRTHDAY AND 18 MONTHS OLD. AROUND 2 HERE, HE'S JUST BEEN DIAGNOSED. I THINK YOU CAN SEE DEB IS TRYING TO GET HIS ATTENTION, HE'S HAVING A ROUGH TIME. >> DO YOU HAVE A TOY ON THE SHELF? LOOK. DO YOU HAVE A TOY THAT HAS YELLOW EGGS? DO YOU WANT SOME OF THIS ONE? HOW ABOUT THIS ONE? Z >> WE HEAR THERE'S NO IMAGINARY PLAY IN AUTISTIC CHILDREN. >> WE IMMEDIATELY STARTED TRYING EVERY KIND OF THERAPY. SPECIAL DIET. A LONG LIST OF OTHER THINGS OVER TIME. WHAT DO YOU WANT? I WANT -- I WANT -- I, SHOW ME THE WHOLE THING. I WANT, BOTH HANDS. WANT. DO THIS. GOOD. >> BEHAVIOR MODIFICATION IMITATION. DOVE WAS MUCH BETTER BACK THEN THAN NOW. HE LOST THESE SKILLS. >> TRY AGAIN. TOUCH YOUR NOSE. >> IF WE PUT HIM IN A NORMAL PEACEFUL SETTING, TYPICAL PEERS IT WOULD BE HELPFUL, HE WAS OVERWHELMED IN THAT SETTING AND AT THE SAME TIME (INAUDIBLE). HE WANTED TO BE WITH CHILDREN, HE WAS INTERESTED IN THEM BUT THERE WAS ALMOST NOTHING HE COULD DO TO INTERACT WITH THEM, HE JUST DIDN'T HAVE THE MOTOR SKILLS, LANGUAGE SKILLS, HE JUST DIDN'T HAVE ANY WAY TO INTERACT WITH THEM. HE EASILY GETS CAUGHT UP IN SENSORY THINGS LIKE THE WALL. >> LOOK AT THE WORDS. LOOK AT THE WORDS. THAT'S RIGHT. SAY IT AGAIN. >> WHAT DID YOU ASK FOR? OH, SHOW ME. LET'S SEE, WHAT IS IT? >> THIS IS THE PICTURE EXCHANGE SYSTEM BETWEEN -- FOR A FEW YEARS. >> I WANT NOODLES. YOU WANT NOODLES? YEAH? Z >> HI. >> GOOD. >> MOTOR THERAPY. WOW. >> YEAH. >> BACK TO EARTH. BIG VOICE. FALL. >> -- (INAUDIBLE) THE KIND OF LIFE WE WANTED DOVE TO HAVE QUICKLY. WHEN HE WAS NINE I MET THELMA AND TITO AND THELMA WAS ABLE TO GET DO TO BEGIN POINTING AT LETTERS AND THIS WAY HE STARTED TO COMMUNICATE AND REALLY SHOWED US THAT HE HAD NORMAL INTELLIGENCE INTACT. >> OKAY. D. R. O. U. B. COME ON.9/ R. S. >> BY THE TIME DOVE WAS 12 WE HAD TO START OUR OPEN SKOL BECAUSE HIS BEHAVIORS CONTINUED TO BE VERY AUTISTIC, BUT HIS COMMUNICATION SKILLS WERE IMPROVING AND HE WAS VERY CAPABLE OF LEARNING AND HE WASN'T GETTING THE KIND OF EDUCATION HE DESERVED ESPECIALLY WITH WHAT A STRUGGLE -- SO WE STARTED OUR OWN SCHOOL, THIS IS HIS TEACHER WHO TAUGHT HIM FOR ALMOST THREE YEARS. DOVE HAS GOTTEN TOTALLY CAUGHT UP TO GRADE LEVEL NOW. >> IS SOMETHING BOTHERING YOU? WHAT IS IT? >> WHAT DO WE CALL A CEREMONY WHICH A NEWLY ELECTED PRESIDENT SWEARSES LOYALTY TO THE CONSTITUTION AND TAKES OFFICE? (INAUDIBLE). >> I, NEXT IS -- NEXT IS -- GET IT? NEXT IS, GO. U. AND NEXT IS - NEXT IS -- U, NEXT IS. R AND GO. GET IT. A. NEXT IS. T. AND NEXT IS, GET IT. I. THAT'S RIGHT. NEXT IS -- THERE YOU GO. NEXT IS -- >> WHO DO YOU FEEL IS MORE EXPERIENCED? COME ON. J. NEXT IS. H, NEXT IS. N, NEXT IS -- K. NEXT IS E. R. NEXT IS. COUPLE MORE QUESTIONS. I KNOW YOU'RE ASKING FOR A BREAK. FINISH THE NAME. R, NEXT IS. >> I THINK I HIT THIS AND JUST ENDED IT SLIGHTLY EARLY BUT THAT'S ALL RIGHT. YOU CAN TELL HE'S A DEMOCRAT. SO COW PROBABLY SAW HIM RUBBING HIS EYES AN HEAD A LOT, BECAUSE MOST OF HIS LIFE UNTIL AGE 9 HE WAS RANDOMLY LOOKING AROUND AT THINGS HE WAS AND WHEN HE STARTED TYPING HE GOT TREMENDOUS EYE STRAIN AND HE STILL DOES SOMETIMES SO YOU SAW IN THERE WE MET SOMEONE WHO HELPED HIM BEGIN TO COMMUNICATE. AND I'M GOING TO TELL YOU ABOUT THIS BECAUSE I THINK THERE'S SOMETHING VERY IMPORTANT WHICH IS SOMEONE NOTICED TICTO AS A CHILD WHO HAD BEEN DIAGNOSED WITH MENTAL RETARDATION IN INDIA. STARING T THE CALENDAR A LOT. I LOVE THIS, HE MADE VERY GOOD EYE CONTACT WITH THE CALENDAR. AND HE HAD THE JEEPIOUS TO REALIZE THAT HE LIKED THE NUMBERS AND IF SHE COULD FIND A WAY TO USE THE NUMBERS TO TEACH, THIS WOULD BE OOH POWERFUL THING. NOTHING ELSE WAS WORKING. SHE REALIZED IF SHE COULD GET HIM TO SHOW HIM UNDERSTANDING OF SEQUENCE, 1, 2, 3, WHAT COMES BETWEEN 1 AN 3. AND SHE WAS ABLE TO DO THIS. AND ACTUALLY WAS ABLE TO IN THIS WAY USING SEQUENCE THINGS IN CONTEXT TEACHING NUMBERS UP TO 100 RAPIDLY AND HAD THE I DON'T KNOWIOUS IDEA THAT SHE COULD TO THIS WITH LETTERS AND SHE WAS ABLE TO TEACH IN THE ALPHABET. ONCE SHE TAUGHT THE L FALL BET IT WENT THERE -- ALPHABET, IT WEPT FROM SOUND, PUTTING LETTERS TOGETHER AND SO ON, IT WAS A TREMENDOUS AM OF WORK AND SHE TAUGHT HIM TO HAND WRITE WHICH TOOK SOMETHING LIKE TWO YEARS CONSTANT DILIGENT, IT WAS HARD FOR MINIMUM HYMN BUT THEY DIDN'T HAVE A DEVICE SO ANY TIME SHE WOULD TAKE OUT SOMETHING THAT HE WROTE, IT WAS IN HER HANDWRITING THERE WAS SUSPICION SO SHE VERY LABORIOUSLY TAUGHT HIM TO HANDWRITE PROMPTING HIM TO GO FROM ONE POINT TO THE NEXT TO MAKE A SINGLE LINE AN ACTUALLY EVERY LINE THAT MAKES UP THE ALPHABET, PUTTING IT TOGETHER, SO THEY CAN WRITE HSELF. INTERESTINGLY, VISUAL ATTENTION REMAINS SO POOR IF HE WERE HANDWRITING SOMETHING UNLESS HE WERE PROMPTD TO MOVE TO THE RIGHT ACROSS THE PAGE HE WOULD JUST WRITE EVERY LETTER ON TOP OF EVERY LETTER AND YOU COULDN'T READ IT THEN. ANYWAY, I FOUND OUT ABOUT HIM FROM FRANCESCA HABE, SHE SAID YOU NEED TO MEET THIS BOYING HE HAS A HIGH IQ BUT PRESENTS TOTALLY MENTALLY RETARDED WITH SEVERE AUTISM. THAT INTERESTED ME BECAUSE HAVING SON PRESENTED LIKE THAT I NEVER HEARD OF SUCH A THING. SPONSOR TO COME TO THE UNITED STATES. HERE IS SARA SPENCE GIVING HIM THE (INAUDIBLE). THIS POINTS OUT A BIG PROBLEM IN TESTING SYSTEMS. HE WOULD COME OUT AS NON-VERBAL BECAUSE HE COULDN'T REALLY IN THE WAY IT WAS DESIGNED EVEN DO LANGUAGE MODULE. THIS IS HOW WE DEFINE ACTUALLY FOUR RESEARCH PURPOSES. THIS IS VERBAL PERSON, THIS IS NON-VERBAL WHETHER OR NOT THEY CAN TAKE (INAUDIBLE) AND SHE ADOPTED IT FOR HIM TO USE POINTING. WE WANTED TO MAKE SURE HE HAD A BONA FIDE DIAGNOSIS OF AUTISM BEFORE OTHER STUDIES SO WE TRAVELD THE COUNTRY COUNTRY. THESE PLACES WE WENT TO DO ELECTROFIZZ QUO LOGIC AND NEUROPHYSIOLOGIC STUDIES. WE THOUGHT IT WAS A REALLY ROSETTA STONE, IT WAS EFFORT BUT HE COULD COMMUNIQUE WELL BY TYPING. AND WE COULD ASK QUESTIONS THAT WE NEVER REALLY BEEN ABLE TO ASK A PERSON LIKE THIS BEFORE. ND WE FOUND OUT ASTONISHING THINGS, I WON'T GO INTO DETAIL BUT BASICALLY HE SAID WHEN HE WAS YOUNG EVERYTHING WENT TOGETHER WRONG, IF HE LOOKED AT A CLOUD HEARD BANANA THEY WEPT TOGETHER. PUTTING IT IN A QUICK NUTSHELL BUT COULDN'T MAKE SENSE OF HIS ENVIRONMENT SO HE STOPPEDDED LOOKING AT THINGS AND JUST LISTENING. SO WE GOT THE IDEA THAT MAYBE TEMPLE HAD DONE SOMETHING LIKE THAT BUT GONE IN THE OTHER DIRECTION AND HAD JUST CONCENTRATEDDED ON LOOKING AND NOT LISTENING. GETTING A VISUAL SENSE DEVELOPED. THE STUDIES WE DID DID BEAR THIS OUT. AND ALSO SEEMED TO BE VERY MUCH A FUNCTION OF ATTENTION. AS WELL. SO THAT WHEN HE WAS IN A HYPERAROUSEDDED STATE THINGS GO TOGETHER TOO MUCH AND A HYPOAROUSED STATE THINGS FALL APART. MY BIG QUESTION ISTY TOE -- HE IS AUTISTIC AND WE CAN SHOW HE HAS A HIGH IQ BUT IS HE JUST THIS -- IN THE BACK OF MY MIND OTHER HIDDEN INTELLIGENCE. I DIDN'T THINK TO ASK SOMEONE TO WORK WITH MY SON BECAUSE EVERYTHING WE KNOW SAYS YOU HAVE TO START FROM THE BEGINNING AND YOU HAVE TO HAVE EARLY INTERVENTION WITH ANY TYPE OF INTERVENTION, YOU HAVE TO START EARLY. BUT SHE WAS ABLE TO VERY QUICKLY TEACH HIM TO START POINTING IN THE VIDEO YOU JUST SAW HE TYPED OUT GROUP AND STARS. THAT WAS ONE OF THE FIRST SESSIONS HE EVER HAD WITH HER. IT WAS IN THE FIRST MONTH. SO THERE WAS A LOT OF COGNITIVE ABILITY THAT WE WEREN'T AWARE AND A BASIC ABLE TO READ WHICH IS I SUPPOSE HE GOT BECAUSE BECAUSE WE BUT WORDS ON EVERY PICTURE WE SHOWED HIM. WHAT HAVE WE BEEN DOING? HE TYPED OUT THE WORD LISTENING. I HAVE AN IDEA THAT I WILL SHARE WITH YOU BECAUSE I KNOW IT SEEMS LIKE MAGIC AN CRAZY IN A WAY THAT SOMEBODY COULD BE SO IMPAIRED AND SUDDENLY HAVE THE SIDE THAT IS DEVELOPED COGNITIVELY. MY THEORY TRUE OR NOT, AS GOOD AS ANY, IS THAT IF YOUR COMMUNICATION SYSTEM FOR WHATEVER REASON IS SEVERELY IMPAIRED YOU CAN'T SPEAK, YOU CAN'T WRITE, AND IN THE CASE MY SON COULDN'T RELIABLY SHAKE HIS HEAD YES OR NO, TO EVERYTHING YOU HAVE GOT THAT YOU NORMALLY USE IS BROKEN FOR COMMUNICATION P AND SOMEWHERE BETWEEN 6 AND 8 YEARS OLD, YOUR BRAIN BECOMES ABLE TO READ. TO ACTUALLY LEARN THE ALPHABET AND LEARN PHONICS AND READ. AND MY THOUGHT IS, IS THAT LITERACY IS NOT A FORM OF COMMUNICATION IN THIS BAYING IS WAY THAT I'M TALKING ABOUT, IT IS FOR EVERYONE WHO COMMUNICATES, ADVANCED FORM OF COMMUNICATION BUT PERHAPS PEOPLE LIKE DOVE FOR WHOM LITERACY IS ANALOG SYSTEM THAT'S NOT USED FOR COMMUNICATION BUT COULD BE USED. THAT'S WHAT I EMPHASIZE, BECAUSE SOMEONE CAN READ DOESN'T MEAN THEY CAN TALK OR EXPRESS IDEAS. 'S COUNTER INTUITIVE. BUT LITERACY ITSELF COULD BE USED AS A FRAMEWORK, A STRUCTURE. A PREDICTABLE SYSTEM WHERE YOU CAN TEACH A CHILD WITH NO OTHER SKILLS TO USE FOR COMMUNICATION. AND FOR THAT REASON IT TAKES A LONG TIME, NOT LIKE THEY HAVE A BRAIN WORKING FINE AND YOU BUT THEM IN FRONT OF A KEYBOARD AND SOMETHING MAGIC HAPPENS. MOST LOW FUNCTIONING NON-VERBAL KIDS DON'T KNOW HOW TO POINT WITH WITH A SINGLE FINGER WHICH MOST INFANTS KNOW BEFORE ONE YEAR OLD WHICH IS A GATEWAY SKILL. TOM MENTIONED I WROTE A BOOK ABOUT MY EXPERIENCE BECAUSE I WANT THE SHARE IT AND BE SURE THATTY TOE AND SOMEONE DIP GO BACK AN DISAPPEAR AND NOTHING WAS HEARD AGAIN CH IT WAS TRANSLATED TO 13 LANGUAGES, I GET AN EMAIL EVERY DAY IF NOT MORE THAN ONE BUT AT LEAST EVERY DAY FROM SOMEBODY SOMEWHERE SAYING THEY'RE READING AND TRYING THESE THINGS. IN SOME CASES IT'S REALLY OPENING A DOOR TO COMMUNICATION. JIG A QUICK POINT TO MAKE, PEOPLE OFTEN SAY DIDN'T YOU TRY HIM ON A COMPUTER WHY DID IT TAKE ALL THIS? OF COURSE WE TRIED. HE TRIED HIM ON EVERYTHING. THERE WAS THIS FEELING IDIAGRAM PROBABLY E XPLAINS, THAT THE DEVICE ITSELF WAS SOME SORT OF MAGIC BULLET, IF YOU GAVE TO IT THE KID WHO HAD COGNITIVE ABILITY, THEY SHOULD BE ABLE TO COMMUNICATE BY VIRTUE OF HAVING THE DEVICE. I TELL YOU NOW, IN 99% OF THE CASES THE DEVICE IS USELESS WITHOUT TRAINING. THIS IS SOMETHING I WOULD RECOMMEND AS RESEARCH FOCUS FOR NON-VERBAL AUTISM IS AND CONNIE WHO YOU HER AT THE LAST MEETING HAS DONE WORK WITH THIS AND APRIL BENOFICCH AT RUTGERS AND I THINK WE HAVE TO REALIZE IF WE GO THROUGH BEHAVIOR MOD ABA TO GET A KID TO SIT AT THE TABLE AND EAT OR PUT CLOTHES ON, WHATEVER WE WANT TO DO, WE CAN'T EXPECT SOMETHING WHO SPENDS MOST TIME STEMMING AND CANNOT COMMUNICATE TO RESPOND TO A KEYBOARD OR DEVICE OR iPAD AND COMMUNICATE ALL OF A SUDDEN. THIS IS A VERY, VERY BIG INTERSECTION THAT HAS TO DO WITH JOINT ATTENTION, IT'S E A MOTOR, NEUROLOGICAL, BEHAVIORAL. BUT IT CAN BE DONE. IT'S STRIKING VINIAGRETTE THINK ABOUT IT WHY WE DON'T THINK -- AFTER A WHILE, WHY WE DOPE THINK TEACHING A BASIC GATEWAY SKILL LIKE POINTING, WITH A SINGLE FINGER, POINTING, VOLUNTARILY POINTING TO INDICATE SOMETHING, AS THE FIRST THING WE TEACH SOMEONE WHO IS NON-VERBAL. COMMUNICATION IS BASIC. WHEN WE THINK ABOUT MEDICAL PROBLEMS AND QUALITY OF LIFE, COMMUNICATION IS ONE OF THE MOST FUNDAMENTAL THINGS WE CAN TREAT TO IMPROVE OTHER THINGS. DOCTORS ARE BETTER IF THE KIDS CAN PICK UP THE ICE CUBE. AND OUT PUT IT THERE ON THEIR CHEST. ONE OTHER THING THIS IS WORK OF (INDISCERNIBLE), A FEW YEARS OLD BUT THERE IS SOME RESEARCH TO SUPPORT THE IDEA THAT YOU CAN HAVE COG ANITIVE -- YOU CAN DO WELL COGNITIVELY AND THAT CAN BE KISS ASSOCIATED FROM DOING WELL SOCIALLY. IN THIS CASE THEY TOOK RODENTS AND RAISE THEM IN A STIMULATING ENVIRONMENT WITHOUT SOCIAL STIMULATION. THOSE ARE NOT DONE P LED, THEY'RE CONSIDERED ONE THING. BANNOCK THEY DID AND THEY SHOWED YOU CAN DISASSOCIATE THESE THINGS AND I THINK THAT IS PART OF WHY SOMETIMES WE HAVE SOMEONE WHO SURPRISING HOW MUCH THEY HAVE LEARNED THOUGH THEY CAN'T SPEAK OR COMMUNICATE AND BEHAVIOR IS SO SEVERE, STILL THEY COULD HAVE GOOD INTELLIGENCE, IT IS POSSIBLE. A VERY BASIC PROBLEM IS, HOW MUCH RESEARCH IS BEING DONE, IN NON-VERBAL AUTISM, I CAN'T TO THAT BECAUSE THERE'S NOT A WORD FOR IT, WE DOPE KNOW WHAT IT IS. WE DOPE KNOW IF PHYSICALLY CAN SPEAK OR SOMEONE THAT CAN BARELY SAY TEN WORDS, IS THAT NON-VERBAL? OR SOMEONE WITH AGAIN VOCABULARY BUT CANNOT COMMUNICATE? THESE ARE THINGS WE BEGIN TO WORK IN THESE THREE MEETINGS I TOLD YOU ABOUT. WHETHER WE FIGURE IT OUT, WE NEED GUIDELINES BECAUSE FOR EXAMPLE I WEPT ON THE NIH SITE AND THEN ON THE IACC RESEARCH PORTFOLIO ANALYSIS SITE WHICH IS VERY GOOD AND THAT WAS A LOT OF WORK AND WORTH HAVING THERE, MAKES IT EASIER TO FIND STUFF. HOWEVER, IF YOU'RE LOOKING FOR NON-VERBAL ANYWAY YOU PUT WITH A MINE OR WITHOUT, -- HYPHEN OR WITHOUT, I LOCK THROUGH 2010 AN 2009 WHICH ARE THE YEARS UP THERE. OUT OF 139 PROJECTS AFTER I LOOKED BY EYE, THERE WERE 13 YOU COULD EVEN LONGER STRETCH OF IMAGINATION, -- IMAGINATION, APPLY TO NON-VERBAL AUTISM SPECIFICALLY. IN 2009 OUT OF 72 I THINK THERE WERE 12 BUT SOME WERE THINGS THEY WERE BEING DONE FOR THE GENERAL AUTISM POPULATION BUT THEY HAD SOME SIGNIFICANCE FOR THE NON-VERBAL SO HOW MUCH POPULATION IS THIS? SHOULD WE BE CONCERNED THAT -- WHATEVER PERCENTAGE POPULATION NON-VERBAL IS, IS BASICALLY IN THE SAME POSITION IT WAS IN WHEN WE STARTED ADVOCATING 20 -- 19 YEARS AGO. WE'RE GETTING RESEARCH GOING, WE BETTER WORK ON PEOPLE WHO WILL BE CLIENT WHO WE FEEL DOCTORS AN PEOPLE WORK WITH, THE OTHER MORE DIFFICULT PEOPLE, LIKE CATATONIA SLIDES AND VIDEO, IT'S NOBODY'S FAULT, WE JUST CAN'T GET TO THEM. THAT'S NOT ACCEPTABLE AT THIS POINT. WE HAVE BEEN IN THIS NOW A GOOD MANY YEARS. LET'S TALK ABOUT THE NUMBERS. THERE REALLY ARE NONE BUT THE BEST GUESS IS THERE'S SOMETHING LIKE 20 OR 25% WHO YOU SAY CAN'T SPEAK OR THEY CAN SAY A FEW WORDS BUT HARD TO UNDERSTAND. AT LEAST 25% BUT QUITE A BIT MORE ARE TYPE WHO CAN SPEAK BUT LITERALLY HAVE TO BORROW A SERIAL AD TO ASK FOR BREAKFAST. THEY CAN'T GENERATE VOLUNTARY LANGUAGE WITH MEANING AT ALL. SO WE'RE TALKING SOMEWHERE BETWEEN A QUARTER AND HALF THE SPECTRUM, I THINK THAT'S A REASONABLE GUESS. I DO ANIMATION AN POWERPOINT I CONFUSE MYSELF. I SHOULDN'T DO IT. I TRY TO GET TRICKY. NOTHING IS REALLY KNOWN ABOUT THESE INDIVIDUALS THEY'RE NOT INCLUDED IN RESEARCH. FIRST THERE ARE ALMOST NO RESEARCH PROGRAMS THAT ARE LOOK SPECIFICALLY AT THEM AND THEY RIP COLLUDED IN ALMOST NONE ONGOING THAT WOULD -- COULD INCLUDE A LARGER GROUP. THERE WAS A TIME THEY SAID CHILDREN COULDN'T BE RESEARCHED, THEY WERE TOO DIFFICULT AND EVENTUALLY THE NIH -- IT BECAME DIFFERENT. SO I JUST WANT TO SAY FROM MY EXPERIENCE GETTING INVOLVED FROM EARLY ON WHEN OR SON WAS TWO AND THREE AND STARTING, EVERYTHING WE HAD TO DO THEN ABOUT AUTISM AND AUTISM RESEARCH THE NON-VERBAL GROUP IS SAME. IT IS THE SAME. THERE ARE NO GOOD EDUCATIONAL INTERVENTIONS THE ONES THAT WORK TO SOME DEGREE FOR THE REST OF THE POPULATION YOU RECALLLY DON'T WORK. THAT'S HOW PEOPLE ARE DEFINED LOW FUNCTION OR NON-VERBAL THE FACT THEY CAN'T USE THINGS THAT ARE OUT THERE BUT I THINK WE NEED TO THINK ABOUT WHAT CAN CAN WE GIVE THEM THEY CAN USE. WE NEED TO MAKE THINGS FOR THEM. AND CREATE THINGS FOR THEM AND UNDERSTAND THEM BETTER RATHER THAN USE THE FACT THAT THEY SOMEONE WHO HAS RECEPTIVE LANGUAGE BUT CAN'T SPEAK OR WRITE WILL NOT TELL YOU THAT ON THE ADI OADOS. SO I WANT PEOPLE TO RETHINK THE MODEL AND I WILL JUST RUN THROUGH THIS QUICKLY BUT BASICALLY SINCE FIVE OR SIX, SEVEN YEARS AGO WHEN COPY NUMBER VARIATION STUDIES BEGAN TO COME OUT AND ALSO PEOPLE SHOWING RARE GENERAL TUCK CAUSES AND -- THESE ARE JUST EXAMPLES, MYTRITY POWERPOINT SKILLS HERE. SO YOU CAN SORT OF IGNORE THE LEGEND ON THE RIGHT, I WEB OVER A BUNCH OF PAPERS AN NONE REALLY AGREED. SO WOULD YOU SAY TOM, THIS IS ROUGHLY, THERE'S A BUNCH OF LITTLE THINGS IN POSSIBLY A QUARTER OF THE PIE AND THEN THE REST IS WHAT WE USED TO CALL REAL AUTISM. I WENT TO A MEETING FIVE YEARS AGO WHICH HAPPENED TO BE ABOUT DEVELOPMENTAL DISORDERS THAT WE THOUGHT WERE AUTISM BUT WEREN'T LIKE LET'S OR FRAGILE X AND THEN OTHERS THAT ARE MORE RARE. WHAT STRUCK ME WAS ALL THE DISORDER WERE LIGHT YEARS AHEAD OF REAL AUTISM IN TERMS OF FINDING WAYS TO BE TREATED BECAUSE THEY KNEW THE MOLECULAR MECHANISM FOR EACH OF THESE. SO THAT'S MANY I HOPEFUL NOTE IS IF AND WHEN THE PIE STARTS TO LOOK LICK THIS, MY PERSONAL VIEW IS IT WILL, IS THAT WHEN WE HAD OUR GENE BANK WE REMOVE THESE LIKE FRAGILE X BECAUSE THEY WEREN'T AUTISM AN MAYBE THESE THINGS ARE AUTISM BUT WE HAVEN'T FOUND THEM YET, THAT'S A SUSPICION I HAVE. SOME GROUPS ARE BIGGER THAN OTHERS. LET'S LOOK AT THE CURRENT MODEL FOR ONE SECOND. SO BASICALLY, HOW I WOULD LIKE TO CONVINCE YOU TO THINK DIFFERENTLY ABOUT NON-VERBAL AUTISM IS TRADITIONALLY WE HAVE SEEN AUTISM AS A SPECTRUM DISORDER RANGING FROM MILD TO SEVERE WITH KIND OF AS BERGER LIKE OR HIGHER FUNCTION AT ONE END AND THEN THE NON-VERBAL PART OF THE POPULATION BEING THE HARDEST HIT QUOTE UNQUOTE. I CAN TELL YOU I HAVE HEARD THE BEST GENETICIST AND CUTTING EDGE MOLECULAR BIOLOGISTS TELL ME THIS IS THE WAY THINGS ARE AND I'LL SAY WAIT A MINUTE, WHAT ABOUT THAT THING? HOW DO WE RECONCILE THE IDEA THAT SOMEONE IS IN THE HARDETH HIT PART OF THIS GIANT PIE, RIGHT? SO BACK A MINUTE TO LOOK AT THIS, AND WE SEE THIS DOESN'T WORK. YOU CAN'T FIND CHARTS TO MAKE THESE TWO TOGETHER. YOU MIGHT SAY THAT THERE'S A SPECTRUM WITHIN ANYONE OF THESE SLICES, THAT COULD BE TRUE. AND YOU COULD START TO GRADE THESE SLICES ACROSS THE ONES THAT HAVE MORE SEVERE PEOPLE IN THEM BUT YOU CANNOT SAY THE IF YOU'RE NON-VERBAL YOU HAVE NO COGNITIVE ABILITY OR THAT YOU DO OR DON'T BUT FACT IS WE DON'T KNOW, WE GOT TO FIND OUT. IF ANYONE HAS ANY DOUBT GENETICS ARE INVOLVED, I WANT TO SHOW YOU THIS SLIDE WHICH IS MY HUSBAND, AND DOVE AT THE SAME AGE, BECAUSE IT'S SO CUTE, ESPECIALLY THE T-SHIRT. SO THE NON-VERBAL GROUP IS LIKELY TO BE HETEROGENEOUS. A MIXTURE OF DIFFERENT THINGS IN ALL THOSE LITTLE PIECES OF THE PIE. LOW FUNCTIONING BEHAVIORS DO NOT NECESSARILY MEAN NO COGNITIVE ABILITY. ON A HUMAN PERSONAL LEVEL HOW MANY NON-VERBAL CHILDREN RECEIVE A LIFE LONG DIAGNOSIS OF MENTAL RETARDATION, BASICALLY THERE'S NO HOPE. IF THEY AREN'T TALKING BY FIVE, I WAS LUCKY SOMEONE CAME ALONG AN HELPED MY SON COMMUNICATE BY AGE 9. THIS IS THE VIDEO THAT WILL REALLY -- IT'S LIKE FOUR OR FIVE MINUTES, IT'S TEMPLE GRANDICSN INTERVIEWINGTY TOE. THIS IS LIKE ONE OF THE MOST INTERESTING VIDEOS I HAVE EVER SEEN. IT REALLY CALLS INTO QUESTION WHAT IS LANGUAGE I THINK. YOU WOULD SAY THAT SHE WAS HIGHER FUNCTIONING BETTER LANGUAGE ANDTY TOE WAS LOWER FUNCTIONING LANGUAGE BUT LET'S LOOK. HOPE YOU CAN HEAR IT. >> (INAUDIBLE) AND I THINK IN PICTURES. YOU MIGHT BE WONDERING WHAT DOES PICTURES REALLY MEAN? EVERY THOUGHT I HAVE IS A PICTURE. I DON'T HAVE A LANGUAGE BASED THOUGHT. VISUAL THINKING IS VERY COME PART MENTALLIZED. MY MEMORIES DON'T MIX TOGETHER. SO HOW DO YOU DEAL WITH SOMETHING LIKE THE CONCEPT OF A DOG? I SAID I DON'T KNOW WHAT YOU MEAN BY ABSTRACT CONCEPT OF A DOG. THERE'S A DOG RIGHT THERE. IT'S DIFFERENT THAN THOSE TWO DOGS. HOW CAN YOU HAVE A GENERALIZED GENERIC DOG CONCEPT? I TONE HAVE ANY SUCH SITE. HOW ABOUT THAT, IS THAT A DOG? SUPPOSEDLY IS. HOW DO I DEAL WITH A CARTOON DOG LIKE SNOOPY? HE GOES IN THE DOG CATEGORY. IN ORDER TO GET A GOOD CONCEPT OF WHAT A DOG IS, I HAD TO GET -- SEE A LOT OF EXAMPLES OF DOGS. IF THIS CRAZY PICTURE WAS THE ONLY DOG I HAD EVER SEEN THAT IS WHAT DOGS WOULD LOOK LIKE. THAT IS WHAT A DOG LOOKS LIKE, THAT IS NOT WHAT A DOG LOOKS LIKE. IF I HAVE ONLY SEEN THIS ONE REALLY WEIRD DOG. SO IN ORDER TO GET REALLY GOOD CONCEPTS I HAVE GOT TO SEE A WHOLE LOT OF EXAMPLES. >> IF YOU LOOK AT A SIMPLE THING LIKE A DOOR. >> I THINK (INAUDIBLE) THE DOOR -- >> TALKING ABOUT PERCEPTION HERE HOW HE SEE IT IS ROOM. AND THINGS. (INAUDIBLE). OPEN. ON. IF I TAUPE GET ENOUGH TIME. I THINK IT IS VERY SLOW. I AM GETTING THERE. MY EYES GET PREPARED AN IT IS VERY SLOW TO REALIZE WHETHER THE DOOR IS OPEN OR CLOSED IF I DON'T GET ENOUGH TIME. >> THERE ARE THOUSANDS OF ITEMS AROUND US IN THIS ROOM AND IF IT TAKES YOU SO LONG TO RECOGNIZE THE DOOR WHAT DO YOU DO IN THIS SITUATION? >> I WALK OUT AS I DID NOW TO GET A PICTURE AND DEVELOP IT OUTSIDE. TIME IS IMPORTANT. (INDISCERNIBLE) TIME IS IMPORTANT TO GET THE WHOLE (INAUDIBLE). >> I GOT A PICTURE HERE THAT IS INTERESTING TO ME, IT'S MY FAVORITE THING IN THIS PICTURE. I WANT TO SEE IF YOU CAN TELL ME WHAT THEY ARE. >> (INAUDIBLE). >> YES RIGHT THERE. MY FAVORITE THINGS. THESE ARE MY FAVORITE THINGS, YOU KNOW WHAT THOSE ARE? OKAY. THAT'S RIGHT. THOSE ARE MY FAVORITE THINGS. >> I THINK (INAUDIBLE). YOU SEE THEM IN INDIA MEANING COWS. >> ABSOLUTELY. >> WHAT DO YOU FEEL LIKE VINIAGRETTE EAR IN A LARGE NOISY PLACE? STIMULATING PLACE LIKE A SUPER MARKET? >> I NEED TO BE AWARE OF MYSELF. I NEED (INDISCERNIBLE) >> I NEED TO MOVE IN THE DIRECTION OF MY BODY. >> OF COURSE WITH WITH EVERY NEW SITUATION BOTHERS YOU SO WHAT YOU MEANT BY THAT? >> I THINK >> YOU THINK A DOOR OPENS. THE DOOR OPENS IS A SITUATION AND A DOOR CLOSE, IS A SITUATION. >> I DON'T KNOW WHAT THAT MEANS. >> EVERYTHING TO RECOGNIZE H HE RECOGNIZES EVERYTHING. >> WHAT DOES THAT MEAN? >> A DOOR IS OPEN IS ONE SITUATION. (OVERLAPPING SPEAKERS) >> WHAT WAS THE ANSWER? CAN YOU READ IT BACK? >> I THINK A DOOR OPEN IS A SITUATION AND A DOOR CLOSE IS A SITUATION. >> INTO WRY THIS DOWN. I THINK THE DOOR OPEN IS THE SITUATION. AND A DOOR CLOSED IS A SITUATION? >> I DON'T ONCE AZa DOOR HAS TO DO WITH THE SITUATION. >> PORTIA, I'M CONCERNED ABOUT THE TIME. >> THE SAME -- >> THERE ARE CONDITIONS OF THE SAME ROOM. >> I DON'T KNOW WHAT THAT MEANS. >> THE CLOSEST IS IF YOU WERE DOING AN OVERVIEW OF A ROOM AND THE DOOR IN THE CLOSED POSITION AND OPEN POSITION. THAT'S THE CLOSEST I CAN THINK OF. (OVERLAPPING SPEAKERS) >> SAYING IT'S A METAPHOR. >> SO WE HAVE TO WIND THIS UP. >> I'LL WIND IT UP WITH YOUR WORDS, TOM. I THOUGHT THIS WAS A VERY NICE QUOTE CLEARLY WORDS LIKE NON-VERBAL AND LOW FUNCTIONING DONE CUT IT AND -- DON'T CUT IT. IT SAYS HOW MANITY TOES ARE THERE AND MORE BASIC LEVEL IT CALLS INTO QUESTION SOME BASIC MODELS OF VERBAL COMMUNICATION ASAA PROXY FOR SOCIOLOGY. I'M JUST ABOUT THE END. SO THERE'S KEY QUESTIONS TAKE HOME QUESTIONS. HOW MANY OF THESE PEOPLE HAVE RECEPTIVE LANGUAGE? WHAT GATEWAY SKILLS CAN WE TEACH TO STAR COMMUNICATE AND WHAT COGNITIVE MEASURES CAN BE DEVELOPED AND AAT THAT PARTICULAR TIMED, IN OTHER WORDS IF THEY'RE TAKING THE ADI OR THE ADOS OR JUST SIMPLY TAKING TESTS TO SEE WHAT THEY SHOULD BE IN, WE NEED TESTS FOR THEM. I WANT TO GIVE YOU TWO CONCRETE EXAMPLES OF STUDIES THIS IS MY TWO CENTS, LOOKING THROUGH THE RESEARCH, I THINK THESE FOR EXAMPLE ARE IMPORTANT STUDIES AND I HOPE THEY GET THE RESEARCH ARE THES GET DISSEMINATED. BARRY GOURDEN HAS ONE ON -- I THINK IT IS THE SCIENCE FOUNDATION FUNDING THAT? ALISON, DO YOU REMEMBER? DEPARTMENT OF DEFENSE. AND THAT IS RECEPTIVE VOCABULARY KNOWLEDGE LOW FUNCTIONING AUTISM BY EYE MOVEMENT, PUPILLAR DILATION AN EVENT RELATED POTENTIAL LIKE (INDISCERNIBLE) THINGS LIKE THAT. THE SECOND IS SOMEONE WHO WORKED IN BRAIN INJURY PATIENTS AND DEVELOPED A PORTABLE NON-INNOVATIVE EEG ERP SYSTEM VERY EASY TO USE AND YOU WOULD BASICALLY SHOW A PERSON A WORD AND THEY WOULD SEE A PICTURE IT WAS MATCH OF MISMATCH. IN THIS WAY IT WAS A VERY CLEAR CLEAN SIGNAL NOT OPEN FOR MUCH INTERPRETATION WHETHER THE PERSON UNDERSTOOD THE WORD OR NOT. SO I THINK THINGS LIKE THIS ARE REALLY IMPORTANT ESPECIALLY PEOPLE WHO ARE HARD TO WORK WITH. WE JUST DOPE KNOW WHAT THEY HAVE GOING ON INSIDE. AT EVERY AGE DEFINITELY. SO JUST TO CONCLUDE WE NEED RESEARCH, WE NEED NON-INVASIVE ASSESSMENT OF COGNITION, AND -- IN THIS POPULATION. WE NEED TO DEVELOP TESTING FOR THEM THAT THEY CAN -- THAT IS USEFUL AND APPROPRIATE FOR THEM AND WE NEED TO DEVELOP LITERARY-BASED COMMUNICATION ORIENTED POINTING AND EVEN MORE IMPORTANTLY THE BASIC GATEWAY SKILL OF POINTING AT SOMETHING. WITH INTENTION. I WANT TO EMPHASIZE THIS GROUP IS PROBABLY, THIS IS MY TWO CENTS, THEY'RE GOING TO BE A GOLD MINE IN DISCOVERING THE RARE GENETIC CONDITIONS METABOLIC CONDITIONS LIKE THE FOLATE CONDITION WE HEARD OF EARLIER AND THINGS LIKE MITOCHONDRIAL DISORDERS. ALSO THE CATATONIA AND THE GI PROBLEMS THE FIRST THINGS I MENTIONED THE GENETIC METABOLIC, SO ON ARE THINGS THAT THE MORE SO-CALLED LOW FUNCTIONING KIT OR ADULT IS THE MORE WORKUP THEY SHOULD GET AND MORE FREQUENTLY. THEY SHOULD GET EVERY FEW YEARS BECAUSE NEW THINGS ARE BEING DISCOVERED IN THESE AREAS AN NEW TESTS ARE AVAILABLE. YOU NEVER KNOW IF THERE'S A TREATMENT AVAILABLE. SO I THINK THEY'RE MORE LIKELY TV THESE THINGS THAN HIGHER FUNCTIONING PART OF THE POPULATION. THEN LASTLY GENERAL MEDICAL CARE, I DON'T KNOW IF ANYONE IN HERE HAS A CHALLENGING AUTISTIC CHILD OR ADULT WHO IS NON-VERBAL. IT'S VERY ALMOST IMPOSSIBLE TO GET GOOD MEDICAL CARE. AND THIS IS SOMETHING THAT SHOULD BE TAKEN OUT INTO TRAINING FOR PHYSICIANS AND I WOULD LIKE TO SEE ADVOCACY AROUND THIS BECAUSE THESE PEOPLE ARE NOT GETTING BASIC MEDICAL CARE REALLY. THERE IS DOVE, THIS IS MY VISUAL WHY COMMUNICATION IS GOOD. THERE HE IS WITH SOME -- A FRIEND AND BROTHER AND SISTER. OKAY. I CAN'T BELIEVE I GOT ALL THE WAY THROUGH. THANK YOU SO MUCH. [APPLAUSE] >> THANK YOU, PORTIA. WE HAVE TO BREAK. TO TRY TO RECOVER SOME OF THE TIME IS CUT THE LUNCH HOUR TO SOMETHING LIKE 15 TO 20 MINUTES SO I NEED EVERYBODY BACK HERE BY 1:30 AT THE LATEST. LET ME CHECK, BECAUSE WE WERE SUPPOSED TO START PUBLIC COMMENT AT 1:15. IS THERE ANYONE SCHEDULED WHO CAN'T DELAY 15 MINUTE? DOES THAT INTERFERE WITH ANYBODY'S SCHEDULE? YOU CAN LEAVE EVERYTHING HERE. THERE'S A CAFETERIA FIRST FLOOR >> WE'RE GOING TO BEGIN PUBLIC COMMENT PERIOD. WE HAVE A LONG LUST OF PEOPLE WHO HAVE SIGNED UP FOR PUBLIC COMMENT. I WANT TO REMIND THE COMMITTEE ORAL STATEMENTS WERE SENT TO YOU, THEY'RE IN YOUR PACKAGE ALONG WITH GROUP OF WRITTEN STATEMENTS AS WELL. SO THERE'S A NUMBER OF THINGS THAT YOU HAVE ALREADY RECEIVED BY EMAIL TO PREPARE FOR THIS MEETING. BECAUSE WE WON'T HAVE SUFFICIENT TIME TO GO THROUGH THOSE STATEMENTS IN DETAIL MANY OF US WOULD LIKE, MACK SURE YOU LOOK AT THEM BEFORE YOU COME, WHILE WE'RE HERE WE WAN EACH PERSON SIGNED UP, TAKE THREE MINUTES TO TELL US THE MAIN PART OF WHAT THEY NEED US TO HEAR APPROXIMATE IN THE ORDER WHICH THEY SUBMITTED THEIR COMMENTS SO FIRST COMMENT IS FROM CASSANDRA OLDOM. YOU CAN COME TO THE MICROPHONE AT THE FRONT OF THE ROOM OR -- PODIUM IS PROBABLY EASIEST BUT IF YOU WOULD LIKE YOU CAN ALSO -- IF'IER YOU CAN SIT AT THE TABLE. MS. CASSANDRA OLDRUM HERE? IF NOT, MOVE TO THE SECOND PERSON WHO IS EILEEN ANY NICOLE SIMON. Q. CAN YOU HEAR ME? >> YES. I'M BAD AT PUBLIC SPEAKING. WHAT I PREFER IS TO HEAR MEMBERS OF THE COMMITTEE DISCUSS IDEAS THAT I SUBMITTED AND BASICALLY LANGUAGE AND HOW IT IS DISRUPTED IN THE BRAIN SHOULD BE THE FOCUS OF RESEARCH AND HOW ALL THESE ADDITIONAL CAUSES ABOUT THESE AREAS OF THE BRAIN OF HIGH BLOOD FLOW AND METABOLISM S. IN THE LITERATURE FOR MORE THAN 50 YEARS THERE'S EVIDENCE THESE BRAIN STRUCTURE HIGH BLOOD FLOW AND ME TAB RICH ARE DAMAGED BY AFFIXIA AND TOXIC SUBSTANCES. THIS IS A DOUBLE EFFECT OF ASPHYXIA PLUS BILIRUBIN. PICTURES SPEAK A THOUSAND WORDS SO THAT'S ALL I'LL SAY. AND HOPE YOU DISCUSS IDEAS I KEEP SUBMITTING OVER AND OVER AND OVER AGAIN. THANK YOU. >> THANK YOU FOR BEING SO BRIEF. WE H HAVE TIME AFTER PUBLIC COMMENT FOR DISCUSSION. YOU ASKD THE COMMITTEE TO GIVE A RESPONSE TO COMMENTS YOU MADE PRIOR TO THIS MEETING AS WELL AS PREVIOUS MEETINGS. WE WILL TAKE THAT INTO ACCOUNT. THE NEXT PERSON WAS JILL RUBINO. >> GOOD AFTERNOON, BEFORE I BEGIN MY STATEMENT -- TO DR.S BILLY AND DR. FRYE FOR THEIR EXTRAORDINARY PRESENTATIONS. THEY VALIDATE OUR CHILDREN'S UNDERLYING MEDICAL ISSUES AND ABSOLUTELY THE NECESSITY THEIR PHYSICAL TIM SOMES BE INVESTIGATED. MY NAME IS JILL (INAUDIBLE) MOTHER OF TEN-YEAR-OLD SON WHO RECOVERED FROM AUTISM AND ALSO CO-FOUNDER OF THE PARENT SUPPORT GROUP AIM AUTISM IS MEDICAL. I APPRECIATE THE OPPORTUNITY TO SPEAK TODAY. THIS IS MY FIRST TIME ATTENDING IACC MEETING. I ONLY APPALLED AT THE TREMENDOUS DISCONNECT BETWEEN WHAT IS DISCUSSED HERE AND REALITY OF WHAT'S HAPPENING TO OUR CHILDREN. BECAUSE I HAVE ONLY THREE MINUTES FIRST I WILL READ TEN STATEMENTS OF TRUTH FOLLOWED BY THREE REQUESTS. ONE THOUSANDS OF CHILDREN BECOME SICK FIRST AND GET DIAGNOSED WITH AUTISM LATER. TWO, THEIR ILLNESSES CREATE SYMPTOMS INTERPRETED AS BEHAVIORS ONLY BECAUSE PHYSICIANS DEVIATE FROM THE BASIC PRACTICE OF MEDICINE NO PHYSICAL OR DIAGNOSTIC ASSESSMENT IS EVER PERFORMED. THREE, THOSE BEHAVIORS ARE NUMBERD TO DIAGNOSIS OF AUTISM AND THE CHILD IS LEFT UNTREATED AND BECOMES SICKER. FOUR, THE PARTS ARE LEFT TO TEND FOR THEMSELVES. FIVE, THERE IS NO ASSISTANCE OR SUPPORT. SIX, THE CHILDREN SUFFER IN EXTREME PAIN WHILE HEALTHCARE PROVIDERS REFUSE TO TREAT PAIN. PAIN HAS BEEN CONSIDERED THE FIFTH VITAL SIGN FOR OVER TEN YEARS AN EVERY PATIENT'S RIGHT TO HAVE THEIR PAIN ASSESSED AND TREATED AS STATED BY THE JOINT COMMISSION. SEVEN, SEIZURE DISORDER IMMUNOLOGICAL DYSFUNCTION AN MITOCHONDRIAL DISORDERS ARE COMMON IN AUTISM, NOT RARE. THAT WAS ESTABLISHED HERE TODAY. THESE ILLNESSES ARE NOT CO-MORBID PITY BOCAGES AND THEY NEED TO BE INVESTIGATED. -- IN THE SEVEN YEARS I SPENT RECOVERING MY CHILD I WASN'T EVEN AWARE THIS COMMITTEE EXISTED NOR AM I AWARE OF ANYTHING THAT'S BEEN ACCOMPLISHED BY THIS COMMITTEE. I'M I WERE SPIRED BY THE CLINICIANS THAT PRESENTED TODAY. I HOPE THAT IACC IS ACCOUNTABLE TO THEIR INFORMATION. TEN, MEDICAL NEGLECT AND DISCRIMINATION AGAINST THIS EXPONENTIAL LILY EXPANDING ACUTELY CHRONICALLY ILL PEDIATRIC PATIENT POPULATION WILL NOT GO UP CHECKED. OUR CHILDREN DESERVE SAME ACCESS TO APPROPRIATE HEALTHCARE AS EVERY OTHER PATIENT. I HAVE ONLY THREE REQUESTS. ONE, ONE IN 50 CHILDREN DIAGNOSED WITH AUTISTIC OUR CHILDREN ARE STATISTICALLY OUTNUMBERING ALL OTHER PEDIATRIC ILLNESSES. I SUGGEST THE COMMITTEE ADDRESS THIS AT THE EMERGENCY IT IS. TWO, REQUEST MEDICALLY BASED STANDARD OF CARE FOR AUTISM BE DEVELOPED AND IMPLEMENTED ACROSS THE SPECTRUM OF HEALTHCARE SETTINGS STARTING WITH PEDIATRICIANS. THE FIRST SHOULD BE A DIAGNOSTIC TEST, NOT A REFERRAL FOR DEVELOPMENTAL SCREENING. THREE, LASTLY, I REQUEST THIS COMMITTEE RECOGNIZE THEY'RE RESPONSIBLE FOR THEIR OWN DIRECTION. FAILING TO MAKE THE MEDICAL NEEDS OF THESE CHILDREN A PRIORITY IS ENDORSING THE DENIAL OF O APPROPRIATE MEDICAL CARE AND SUBSEQUENT MEDICAL NEGLECT OF A GENERATION OF CHILDREN. THANK YOU. >> THANK YOU. ALBERT (INDISCERNIBLE) I SHOULD POINT OUT THERE'S ATTACHMENTS GO WITH MR. (INDISCERNIBLE) PRESENTATION AS WELL. THAT'S IN YOUR PACKAGE. >> THIS IS A VIDEO OF MY SON WHO IS 22 YEARS OLE. I WANT HIM TO SEE HA HE DOES DURING THE DAY. >> HE WAS PERFECT -- CAN YOU HEAR ME NOW? AS YOU CAN SEW THERE'S A PATCH OF HAIR IS MISSING ON HIS HEAD. BECAUSE OF HE HIT HIMSELF SO MANY TIMES HE NO HAIR LEFT. YOU SEE HOW STRONGLY HE HITS HIMSELF. THAT BREAKS MYSELF -- MY HEART. HE BITES. HE ATTACKS PEOPLE. HE'S ATTACKING ME RIGHT NOW. HE HAS BROKEN ALL THE KITCHEN CABINETS, BROKE ALL -- I'M ASKING HIM -- >> SIT DOWN. >> NUMEROUS TIMES, HE TRY TO KILL MY 13 YEARS OLESON AND NOW OUR FAMILY HAS BEEN SEPARATED IN TWO GROUP MY SON MY OLDER SON, MY OLEST SON AND MYSELF AND HIM LIVE IN ONE SEPARATE WIFE AND MY WIFE AND YOUNGEST SON LIVE IN DIFFERENT. HE PEE ALL OVER THE HOURS, THROUGH UP IN OUR HOUSE AND OUR HOUSE HAS BECOME A WAR ZONE. BEFORE HE BECOME AUTISTIC HE HAD TWO LANGUAGES. HE BEHAVE NORMALLY. HE LOSS HIS LANGUAGES. HE START BITING HIMSELF HITTING HIMSELF, HITTING HIMSELF AGAINST THE WALL AND RUNNING AIMLESSLY IN THE HOUSE. VERY GOOD LOOKING BOY. AND YOU SEE HOW -- I CAN'T EVEN GO CLOSE TO HOLD HIM NOT TO HIT HIMSELF, I CANNOT DO IT BECAUSE P HE ATTACKS ME. MY NAME IS (INDISCERNIBLE) I'M A BOARD MEMBER OF (INAUDIBLE) A VOLUNTEER ORGANIZATION TO ELIMINATE THE DEVASTATION OF AUTISM IN YOUTH BY MERCURY AND OTHER NEUROTOXINS. AS PAST PRESIDENT OF NEW JERSEY CURE AUTISM NOW, CARPALIA SPEAKS, I WAS WORKING WITH PORTIA IVERSEN AND I WAS GOING TO MENTION HIS NAME, SHE'S HERE. I WANT TO LET YOU KNOW ALL THE ACCOMPLISHMENTS I HAVE IS JUST (INAUDIBLE) PORTIA AND JOHN, I'M SO GRATEFUL TO THEM TO HAVE ME AS PART OF THEIR TEAM CURE AUTISM NOW. AS PAST PRESIDENT OF NEW JERSEY CURE AUTISM NOW, AUTISM SPEAKS WE HAVE DRAFTED AND INTRODUCING COMBATING AUTISM 2006. AT RUTGERS UNIVERSITY WE ESTABLISHED A NATIONWIDE AUTISM GENE BANK, HUNDREDS OF TWIN SIBLINGS SUFFERING FROM AUTISM AND WE ESTABLISHED A CENTER OVERSLEEPS IN THE NATION FOR AUTISM RESEARCH. I'M CO-AUTHOR OF AUTISM MERCURY POISONING. I WORK CLOSE WITH THE UNITED STATES CONGRESS, FDA, NIH AND CDC TO REMOVE (INAUDIBLE) FROM CHILDHOOD RAC NATION. SADLY DESPITE 18 YEARS OF AD HAVE KAY IS WE ARE STILL UNAWARE OF THE CAUSE OF THIS DEVASTATION. NO MEDICATION OR PREVENTION OR SURGERY IN SIGHT. FOR 18 YEARS WE HAVE SOUGHT AFTER CAUSE OF AUTISM. SPENDING MILOS OF DOLLARS IN FIELDS AND FOUND NOTHING CONCLUSIVE. IT IS NOW TIME TO DEDICATE RESOURCES TO THE RIGHT PATH. VACCINES ROLE IN AUTISM, MUST BE INCLUDED IN THE IACC RESEARCH PORTFOLIO. MR. CHAIRMAN, MANY EXPERTS WOULD HAVE US BELIEVE MY SON'S MERCURY WITH VACCINATION. AS A TRAINED SCIENTIST MY READING OF VACCINE LITERATURE INDICATE THAT MANY TRAITS THAT DEFINES AUTISM MAYBE INDUCED BY VACCINATION. THE TIME LINE FOR INCREASING THE AUTISM VIRULENCE CORRESPONDS WITH INTRODUCTION OF TWO NEW VACCINES IN PARTICULAR, THE HIV VACCINE IN 1985 THANK YOU 1990 AND HEPATITIS B VACCINE IN 1991. >> WE'RE WELL BEYOND FOUR MINUTES. I WANT TO MAKE SURE WE GET YOU TO WRAP UP SOON. >> I HAVE TWO SENTENCES. >> THANK YOU. >> AFTER THE SPACE SHUL L COLUMBIA DISASTER THE BOARD WAS CREATED BY CONGRESS TO INVESTIGATE THE ACCIDENT TO GET THE TRUTH. NOW IT IS TIME TO ESTABLISH SUCH INVESTIGATION BOTH TO EXPLORE RELATIONSHIP BETWEEN VACCINE AN AUTISM. LADIES AND GENTLEMEN, U.S. IMMUNIZATION PROGRAM MUST BE MUST BE REGULATED THE CHILDREN ARE VACCINATED WITHOUT KNOWING HISTORY OF MOTHER OR CHILD IMMUNE SYSTEM OR RECOGNIZING IF THE CHILD IMMUNE SYSTEM CAN SUCCESSFULLY RESPOND TO INJECTED VACCINE. MULTIPLE VACCINES ARE INJECTD IN SINGLE DAY WITHOUT CONCERN OF SIDE EFFECTS. BOOSTER VACCINES ARE INJECTEDDED WITHOUT TEST TO CONFIRM T APPROXIMATE B LYMPHOCYTE HAVE BECOME PROTECTED. MR. CHAIRMAN, SINCE 2009 THAT'S VERY IMPORTANT, I WILL ASK YOU TO ANSWER MY QUESTION. SINCE 2009 NATIONAL VACCINE ADVISORY COMMITTEE RECOMMENDED NUMEROUS TIMES TO THIS ORGANIZATION THAT RESEARCH PROGRAM SHOULD BE CONDUCTED WITHIN THE FEEL FIELD OF VACCINE AND AUTISM. AS A DEVASTATED FATHER I STAND BEFORE YOU SAD AN FRUSTRATEED THAT IACC DOES NOT CARE. IT IS ESSENTIAL THAT IACC MEETS ITS OBLIGATION TO THOUSANDS OF PARENTS AND IMMEDIATELY START ISSUING RFA AS RECOMMENDATION OF NVAC. THE RFA NEEDS TO BE ISSUED TO INVESTIGATE THE PHASE INTRODUCTION OF HIV VACCINE AND UNIVERSEAL INTRODUCTION OF HEPATITIS B VACCINE RELATION TO INCREASE PREVALENCE AUTISM AN INVESTIGATE THE RATE IN THE VACCINATE AND NON-VACCINATED CHILDREN (INAUDIBLE) I NEED TO ASK YOU A QUESTION. WHY IN 2009 THIS ORGANIZATION ASK YOU TO CONDUCT RESEARCH ON VACCINE AN AUTISM. WHY NOTHING HAS BEEN DONE? NBAC, IT IS ON YOUR PORTFOLIO. S FROM I WANT TO KNOW, I'M GOING THROUGH HELL EVERY SINGLE DAY. >> I APPRECIATE THAT. >>' THAT LIKE TO SPEAK. YOU'RE NOT BEING FAIR TO ANOTHER SEVEN PEOPLE. >> I WILL SAY TO YOU QUICKLY, SO YOU AND OTHERS UNDERSTAND, THIS COMMITTEE DOES NOT FUND RESEARCH, IT DOES NOT ISSUE RFAs. WHAT WE DO IS PROVIDE ADVICE TO THE SECRETARY, WE STAY OPEN AS A PUBLIC FORUM SO PEOPLE LIKE YOURSELF CAN TELL US WHAT THEY FEEL AN THINK. BUT WE'RE IN THE IN A POSITION, WE DOPE HAVE A BUDGET TO FUND RESEARCH. WE HAVE NEVER ISSUED AN RFA AND NEVER WILL. >> WILL YOU RECOMMEND THEY RECOGNIZE THE THOUSANDS OF PARTS ACROSS THE COUNTRY AND INVESTIGATE THE RELATIONSHIP BETWEEN VACCINE AND AUTISM? >> IT'S NOT GOING TO BE DONE BY THE MEMBERS OF THIS COMMITTEE. IT CAN BE DONE BY ANY OF THE AGENCIES REPRESENTED, YOUR REAL QUESTION NEEDS TO BE DIRECTED TO ANY OF THOSE AGENCIES AND THAT'S A QUESTION THAT GETS DOWN TO VERY FUNDAMENTAL LEVEL THE INDIVIDUAL SCIENTIFIC PROGRAMS THAT EACH INSTITUTE OR EACH AGENCY RUNS. THAT'S AS MUCH AS I CAN SAY. WE HAVE TO MOVE ON. THANK YOU FOR YOUR COMMENTS WE'LL MOVE TO GIANNA REED WHO ALSO HAS SOME ADDITIONAL MATERIAL SUBMITTED IN YOUR PACKAGES AS WELL. I HATE TO BE STICKLER FOR TIME BUT WE LOST ABOUT A THIRD OF THE TIME JUST GETTING SET UP. >> I CAN START TALKING. I SENT ALL OF YOU A LONGER VERSION OF WHAT I'M GOING TO SAY WITH PHOTOS THAT APPRECIATE YOU TAKE THE TIME TO LOOK AT THEM. THANK YOU FOR THE OPPORTUNITY TO SPEAK FOR THREE MINUTES ON BEHALF OF MY SON AND OTHER FAMILIES. MY NAME IS GINA REED, MOM TO THREE BEAUTIFUL BOYS. TODAY I WOULD LIKE TO SPOKE ABOUT MY OLDEST SON WHO SUFFERED SEVERE ADVERSE REACTIONS TO RECOMMENDED VACCINE SCHEDULE. THE PICTURES YOU SEE BEHIND YOU REFLECT YEARS OF SUFFERING DAMAGE AND ATTEMPTS AT RECOVERING MY CHILD. SWELLING RELENTLESS HIGH FEVER ATAXIA, RASHES, DIARRHEA, SEIZURES AGGRESSION, IMMUNE DISFUNCTION, MITOCHONDRIAL DISFUNCTION, SELF-INJURY, EAR INFECTIONS LIST GOES ON. ONCE TYPICALLY DEVELOPING LOVING CHILD DECLINED MEDICALLY RIGHT IN FRONT OF OUR EYES. AFTER MULTIPLE REACTIONS TO VACCINES PEDIATRICIAN TRIED TO PUT OUR SON IN A NICE NEAT BOX, A STANDARD IF YOU WILL.. WE WERE CONCERNED AND HE WAS MISERABLE FEBRILE AN DECLIENTING AND WHEN THE TEST DIDN'T YIELD RESULTS SYMPTOMS WERE WERE EXPLAINED A WAY, WAIT AND SEE MORE TIMES THAN I WOULD LIKE TO SHARE WITH YOU. EVENTUALLY DIAGNOSED AS RECEIVE REARLY AUTISTIC OUR SON LOST IN A SYSTEM THAT HAD NO CLUE HOW TO HELP. A SCHOOL BASED PROGRAM AN TYPICAL THERAPY RECOMMENDED BUT NONE DID ANYTHING TO DIAGNOSE OR TREAT THE UNDERLYING MEDICAL PROBLEMS. BECAUSE OF THIS WE WERE FORCED TO TRAVEL THE UNIVERSITY HOSPITALS ACROSS SIX STATES OUTSIDE OF ILLINOIS TO FIND MEDICAL HELP HE NEEDED. THIS ALLOWED US TO FORM A TEAM OF SPECIALISTS AROUND OUR SON AND WE DEVISED A PLAN TO PROPERLY DIAGNOSE HIS MEDICAL CONDITION AND TREAT EACH APPROPRIATELY. THAT TEAM CONSISTED OF A NEUROLOGIST, A MITOCHONDRIAL SPECIALIST, GASTROENTEROLOGIST, GENETICIST, PEDIATRICIAN, NUTRITIONIST, FAMILY MEDICINE AND COUNTLESS THERAPISTS, WE WORK TOGETHER TO ENSURE WE'RE OPT SAME PAGE AND TREATMENT WAS APPROPRIATE AND OPTIMAL. COLLECTIVELY WE AGREED HIS SYSTEMS WERE DAMAGED, TRYING TO REPAIR. MEDICAL APPROACH ALLOWED NOT ONLY THE OPPORTUNITY TO TREAT AND EVENTUALLY THE LABEL OF AUTISM WHICH A SIDE EFFECT TO THE UNDERLYING MEDICAL PROBLEMS PEELED AWAY HIS PAIN RELIEVED, MY CHILD REEMERGED. IF WE ALMOST TO OUR PEDIATRICIAN, IMMUNOLOGIST THE FIRST ONE? THE EARLY INTERVENTION SPECIALIST, WE CAN TEST HIM LIKE THIS, SENSORY ISSUES TOO MUCH. REALLY? THAT WAS 2006, 2007 AND NOT SURE MUCH HAS CHANGED SINCE THEN. WHAT DO YOU THINK WOULD HAVE HAPPENED IF WE LISTEND TO THAT ADVICE? WE ARE GRATEFUL TO BRILLIANT PHYSICIANS TO NOT LET THE LABEL OF AUTISM CLOUD THEIR CLINICAL JUDGMENT, IDENTIFY THE MEDICAL CONDITION AND TREAT IT SO IT STAND HERE ASKING YOU TODAY, SHOULDN'T THIS BE OFFERED TO ALL CHILDREN? WHERE IS THE COMPREHENSIVE INTERDISCIPLINARY MEDICAL CARE? AND WHY ARE YOU NOT BANGING ON DOORS OF EVERY MEDICAL SPECIALIST THAT TREAT THESE CHILDREN TO ASK THEM WHAT THEY'RE DOING? HOW ARE YOU MISSING THIS AS THE PRIORITY? THE STANDARD OF CARE IS MY OPINION IS CRIMINAL AT THIS POINT WE DO NOT HAVE ONE FOR THIS PATIENT POPULATION. AND I BELIEVE THE IP WAS HERE SO MAYBE THEY CAN ANSWER THAT FOR US AT SOME POINT IN TIME BUT FROM THE MOMENT THESE CHILDREN PRESENT WITH CONCERN THE FIRST THOUGHT SHOULDN'T BE SEND TO EARLY INTERVENTION, IT SHOULD BE A MEDICAL INTERVENTION THEN AND THERE WHILE FAMILIES WAIT FOR SERVICES THIS MANY TIMES DON'T COME. FAMILY NEED CHILDREN MISERABLY AND SO IS THIS COMMITTEE IF YOU CON DOWN THE PATH WITH BLINDERS ON. WE BEG YOU TO UNDERSTAND THAT AUTISM IS MEDICAL. PLEASE LISTEN. RESPECTFULLY SUBMITTED ON BEHALF OF MY SON AND FAMILY. THANK YOUFUL >> [APPLAUSE] NEXT PUBLIC COMMENT IS FROM NICHOLAS CAROLYN AND ANDREW DIMITTIO? >> HEY EVERYONE, I'M HERE TO PROVIDE ORAL COMMENT TO THE COMMITTEE BECAUSE I AM -- COMMITTEE BECAUSE I AM VERY TROUBLED. ON JUNE 9 A YOUNG MAN WITH AUTISM WHO WAS 14 YEARS OLD DIED. AS A PERSON LIVING WITH AUTISM, THIS WEIGHED VERY HARD TO HEAR BECAUSE HE WAS MURDERED. HE WAS ALSO DENIED MEDICAL TREATMENT HE SHOULD HAVE BEEN ABLE TO OBTAIN. HE WAS A YOUNG MAN THAT WAS MISUNDERSTOOD FOR WHAT HIS BEHAVIOR WAS TRYING TO COMMUNICATE. AT ONE TIME WAS LIKE -- I AT ONE TIME WAS LIKE ALEX. I WOULD HURT MY PARENT AND I WAS NOT GETTING THE HELP I NEED. IT WAS HARD FOR ME TO COMMUNICATE HOW I FEEL -- FELT, TELL PEOPLE I DIDN'T FEEL WELL OR WHAT COULD ASSIST ME. MY PARENTS WERE ABLE TO GET MEDICAL TREATMENT THAT I NEEDED AND NOT GO INTO THE HOSPITAL THAT WAS SUGGESTED. I AM ASKING YOU TODAY FOR -- FORM A SAFETY COMMITTEE TO LOOK AT ISSUESES LIKE WHAT HAPPENED TO ALEX AND IS HAPPENING TO MANY OTHER INDIVIDUALS WITH AUTISM ACROSS THE COUNTRY. MY UNCLE MARK DIED DO YOU RESTRAINTED IN 1999 IN A HOSPITAL IN MICHIGAN. HE HAD AUTISM EPILEPSY AND WAS DENIED MEDICAL TREATMENT THAT CAUSED HIS DEATH AFTER BEING RESTRAINED. THINGS ARE NOT CHAINING AND MANY MOTHER PEOPLE ARE DYING. -- CHANGING AND MANY MORE PEOPLE ARE DYING. WE CANNOT LET UNCLE MAC'S DEATH BE IN VAIN. WE CANNOT LET ALL THOSE THAT HAVE DIED DUE TO MEDICAL -- LACK OF MEDICAL CARE AND HAVE DIED IN VAIN. WE CANNOT LET ALEC'S DEATH GO UP ANSWERED. WE NEED TO LOOK ATjqz WHAT IS HAPPENING. PEOPLE LIVING WITH AUTISM LIKE ME WANT A CHOICE IN MEDICAL CARE. PEOPLE LIVING WITH AUTISM ALSO WANT TO BE SAFE. PLEASE FORM A NEW SAFETY COMMITTEE ASAP TO ADDRESS THIS. THANK YOU FOR LISTENING TO ME TODAY. I AM GRATEFUL TO HAVE THIS OPPORTUNITY TO LET YOU AND OTHERS KNOW MY CONCERN. THANK YOU. Q. WE TRAVELED FROM MICHIGAN AND WE HAVE TO -- ONLY 5 MINUTES? >> YOU GET 3 EACH. >> WE ARE IN SUPPORT OF WHAT DR. BUIE AND DR. FRYE PRESENTED ON TODAY. AND HOPEFULLY DR. PERRIN WILL EMBRACE AS MEDICAL CHOICE FOR INDIVIDUALS WITH AUTISM. YOU HAVE MY STATEMENT, I OPEN READ IT EVERYTHING THAT'S -- I WEPT INTO INP WRITTEN COMMENT TO Y'ALL TODAY. WE HAVE -- IT'S VERY EMOTIONAL BECAUSE I LOST MY BROTHER, NICHOLAS LOST HIS UNCLE IN 1999. HE WAS IN -- HOSPITALIZED FOR MEDICAL CONDITION, HE DID NOT GET MEDICAL CARE FOR. HE WAS RESTRAINED BOTH CHEMICALLY AND PHYSICALLY AND HE DIED FROM A PULMONARY EMBOLISM IN HIS LEG THAT WENT TO HIS LUNG BECAUSE HE DID NOT GET PROPER MEDICAL CARE. THAT WAS IN 1999. SINCE THAT TIME WE HAVE BEEN ADVOCATING EFFECTIVE CHANGE IN MICHIGAN. WE CLOSED EVERY INSTITUTION IN OUR STATE. AND WE DON'T -- WE NO LONGER INSTITUTIONALIZE INDIVIDUALS WITH DISABILITIES AND TREAT THEM AS THOUGH THEIR LIVES ENDED. AS MR. ROBESON AND ROBINSON INDICATED TODAY, ADULTS WITH AUTISM NEED MEDICAL CHOICE. WE AS AN AGENCY RUN A NON-PROFIT ORGANIZATION CALLED LEAN ON US. WE SUBMITTED A COMPLAINT TO THE DEPARTMENT OF JUSTICE THREE MONTHS BEFORE HE DIED STATING THAT HE HAD BEEN UNJUST RERESTRAINED CHEMICALLY AND MEDICALLY BY THE HOSPITAL THAT HE WAS BEING TREATED IN. WE SUBMITTED THAT TO THE DEPARTMENT OF JUSTICE AS ARCDA COMPLAINT VIOLATION. WE HAVE YET TO HEAR FROM THEM. ALEX SUBSEQUENTLY DIED AT THE HANDS OF HIS OWN MOTHER BECAUSE HE INITIALLY DID NOT GET PROPER MEDICAL TREATMENT. I WILL NOT DISCUSS -- BECAUSE IT'S NOT THE WAY I WANT YOU TO REMEMBER HIM. WE HAVE THIS PHOTO AND I CANNOT WANT HIGHWAY PATROL HIM TO BE AN INVIBESSABLE VICTIM, LIKE THE CHILD THAT WANDERED AND FOUND DEAD IN A CAR IN WASHINGTON D.C . YESTERDAY. WE HAVE A CRISIS THAT'S HAPPENING TO INDIVIDUALS WITH AUTISM IN THIS COUNTRY. I DON'T WHERE YOU FALL ON THE SPECTRUM WE HAVE VICTIMLESS CRIME WITH AUTISM LIVES IN THE UNITED STATES THAT EF DAY IF SOMETHING HAPPENS TO EM THEY ARE INVISIBLE. WE AS AN ORGANIZATION HAVE CONTACTD THE BUREAU OF JUSTICE AND STATISTICS WE ARE PROVIDED A GRANT BY NATIONAL INSTITUTE OF JUSTICE. WE TALKED TO -- PRESENTED AT NATIONAL CENTER FOR VICTIMS OF CRIMES THE LAST NATIONAL COMPSES ON AUTISM AND VICTIMS AND HOW THEY HAVE BEEN SUBJECTED TO NO TREATMENT FROM THE CRIMINAL JUSTICE SYSTEM IN THE ABSENCE OF VICTIMIZATION ABUSE. WHAT WHICH -- WE'RE TRYING TO TO IS ASKING THE DATA COLLECTION POLICE OFFICERS FILL OUT EFTY IN SOME WAY IDENTIFIES THE VICTIM AS HAVING A DISABILITY. WE HAVE BEEN DOING AND ASKING FOR THIS NOW FOR SIX YEARS, IT WOULD BE VERY, VERY EASY FOR US TO FILE OCR COMPLAINT AGAINST THE DEPARTMENT OF JUSTICE WHO THAW THEMSELVES P EPISHOWER ADA IS IN COMPLIANCE AND SAY YOU IRNOT COLLECTING A DEMOGRAPHIC ON THE POPULATION THAT IS MORE LIKELY TO BE A VICTIMLESS RIME AND INDIVIDUAL WITH A DISABILITY. IN 19 -- 2007 WE WORKED WITH THE DEPARTMENT OF JUSTICE AND THE OFFICE FOR -- ACTUALLY HAVE AN 8 HOUR CURRICULUM THAT SPECIFIC TO (INAUDIBLE) AUTISM. THAT WAS $50,000 GRANT, THERE IS AN 8 HOUR CURRICULUM ON TRAINING FOR LAW ENFORCEMENT CORRECTIONS, FIRST RESPONDER IN THIS COUNTRY THAT CURRICULUM IS WAITING AND SITTING THERE. WAITING TON USED. -- WAITING TO BE USED. WE CONDUCTED A SUFFER RAY REGARDING VICTIMIZATION AND ABUSE OF INDIVIDUALS WITH AUTISM. IT HAS YET TO BE SUBMITTED NATIONAL SUMMARY. THAT INFORMATION IS NOW SITTING THERE, FIVE YEARS OLE. ALL THAT FREE MATERIAL CREATED IN THAT PROJECT ARE SITTING THERE WHILE WE HAVE MORE VICTIM SIGNING, MORE CHILDREN ELOPING AND WANDERING. OUR SON WAS AN ELOPER AT ONE TIME. HE WAS VERY SEVERE AUTISM. YOU SEE IN THE PHOTOS THAT I PRESENT TO YOU WHICH WE VERY RARELY SHARE BECAUSE OF THE STIGMA THAT IS ATTACHEDD TO THAT TYPE OF DOMESTIC VIOLENCE IN THE FAMILY, THAT HAS -- LIVING WITH AUTISM. WE RARE RARE SHARE THEM BUT THAT'S WHAT THINKMY SON DID WHEN HE WAS 11 YEARS OLD. WE DOCUMENTED THAT TO PROTECT NOT ONLY US AS A FAMILY BUT ALSO HIM AS AN INDIVIDUAL LIVING WITH AUTISM. WE'RE HERE TODAY BECAUSE WE FEEL THAT THIS GROUP OF PEOPLE, NO MATTER WHAT AGE YOU REPRESENT, I WAS HOPING JOHN O'BRIEN WAS GOING TO BE HERE BECAUSE Ir WANTED TO ALSO DISCUSS SOMETHING WITHIN OUR SON'S MEDICAID WAIVER. BUT WE HOPE TODAY WITHIN ALL AGENCIES THAT YOU REPRESENT THIS THIS IS SOMETHING LOOK AT AS NOT BEING REPRESENTED. WE HAVE I WERE VISIBLE VICTIMS IN THIS COUNTRY. EVERY SINGLE PERSON THAT HAS A DISABILITY THAT IS VICTIMIZED EVERY DAY, THERE'S NO GREAT MANICKEN THE REPORT THAT POLICE OFFICERS FILL OUT. 17,000 IMPLEMENTS IN THIS COUNTRY FILL OUT THOSE -- POLICE DEPARTMENTS FILL OUT THOSE REPORTS EVERY DAY. HE WAS A POLICE OFFICER FOR 21 YEARS, MY HUSBAND STILL IS. WE CREATED THREE CURRICULUMS TO TRAIN LAW ENFORCEMENT ON DISABILITY, IT'S NOT GETTING DONE. SO IF THIS COORDINATING COUNCIL O COMMITTEE CANNOT COORDINATE SOMETHING TO GET IT DONE, THERE'S GOING TO BE A VERY IMPORTANT PRESENTATION DONE THIS AFTERNOON ABOUT AGENCIES WORKING TOGETHER AND COLLABORATING ON ONE ISSUE WHICH IS WANDERING AND ELOPING BUT WE HAVE QUITE A BIT OF OTHER ISSUES. WE HAVE SEXUAL ASSAULT, WE HAVEss– KIDNAPPING. WE HAVE ABUSE IN SCHOOLS, RESTRAINT AND SECLUSION ISSUE, NOT ONLY IN SCHOOLS BUT ALSO INSTITUTIONAL SETTING. WE HAVE NO DEMOGRAPHIC TO SHOW THAT ON A DAILY BASIS. THE YOUNG MAN FOUND IN THE CAR YESTERDAY SEVEN YEARS OLD FOUND DEAD IN A CAR IS AN INVISIBLE VICTIM. >> WE'RE AT TEN MINUTES. WE HAVE NINE MINUTES FOR THE THREE OF YOU. >> THAT POLICE OFFICER FILLED OUT THAT REPORT ABOUT THAT CHILD'S DEATH THERE WAS NO DEMOGRAPHIC TO FILL OUT THAT HE HAD A DISABLE. ANY TYPE OF CRIME, ANY TYPE OF PROGRAM, ANYTHING WE WILL NEVER HAVE THE DATA THAT SHOWS THAT SOMETHING IS GOING TO WORK. IF YOU COME UP WITH A NATIONAL ALERT SYSTEM, THOSE POLICE REPORTS WON'T TELL US THE CHILD HAS AUTISM WHEN THEY WANDER. ALL THAT NEEDS TO BE DONE IS A BUBBLE FILLED OUT THAT SAYS DISABILITY. I DID A PROPOSAL FOR THE NATIONAL INSTITUTE OF JUSTICE. IT COSTS LESS THAN A HALF A MILLION DOLLARS TO GET THAT DONE ACROSS THE COUNTRY. TO A TRAINING PROGRAM THAT'S VERY EASY. I GOOD A PROPOSAL IF ANYBODY WANTS IT, YOU CAN HAVE IT. BUT THAT'S WHY WE'RE HEAR TODAY BECAUSE PEOPLE KEEP DYING. AND WE DOPE HAVE ANY DATA TO SHOW IT. WE HAVE NO -- IF WE DON'T HAVE THE DATA WE DON'T HAVE THE APPROPRIATIONS TO GET FUNDING TO DO PREVENTION THAT'S WHY WE'RE HERE. I'M SORRY MY HUSBAND -- >> WE'RE NOW AT 11 MINUTES. I'VE GIVEN YOU NINE, IT WON'T BE FAIR TO THE OTHER PEOPLE WHO SIGNED UP FOR PUBLIC COMMENT IF WE TAKE ANY MORE TIME. >> WE HAVE UPDATED COMMENTS FOR NICHOLAS THAT INCLUDES THE PICTURES YOU SHOULD HAVE GOTTEN TO DATE. JUST WANT YOU TO BE AIR AWARE OF THAT. SHE COVERED EVERYTHING >> THANKS TO THE THROW OF YOU FOR COMING. >> THANK YOU. THANK YOU. [APPLAUSE] >> NEXT IS FROM ANN BOWER. >> MY NAME IS ANN BOWER, DOCTORAL STUDENT IN EPIDEMIOLOGY AT THE UNIVERSITY OF MASSACHUSETTS. I'M HERE TODAY TO ASK THE COMMITTEE TO CONSIDER THE NEED FOR RESEARCH TO INVESTIGATE UNDERSTUDIED YET HIGHLY PREF LEN DIRECT PHARMACEUTICAL EXPOSURE FOR BOTH PREGNANT WOMEN AN OFFSPRING. THIS EXPOSURE IS ACETAMINOPHEN. CLOSE TO 70% TAKE THIS DURING PREGNANCY AND MOVE COMMON DRUG ADMINISTERED TO U.S. CHILDREN. SEVERAL BIOLOGIC EPIDEMIOLOGIC EVIDENCE SUGGEST PLAUSIBILITY OF CAUSEAL RELATIONSHIP BETWEEN ASEAT MINIAND DEVELOPMENT OF AUTISM IN A SUSCEPTIBLE POPULATION. OUR RECENT ECOLOGICAL STUDY IDENTIFIED A PLAUSIBLE EXPLANATION FOR THE FOUR TO FIVE TIMES GREATER PREVALENCE IN MALES THAN FEMALES. MALES ARE DIFFERENCIALLY EXPOSED AND DITCHESSIALLY SUSCEPTIBLE TO TOXICITY. SINCE THE MID 1990s GUIDELINES FROM THE AMERICAN ACADEMY OF PEDIATRICS AND WORLD HEALTH ORGANIZATION SUGGESTED 5 TO 7 DOSES OF ASEAT MINUTE FIN BE WITH THE CIRCUMCISION PROCEDURE. SEVERAL STUDIES IDENTIFIED A E LOWER CAPACITY METABOLITE DRUG PARTICULARLY ASOCIETY MINUTE FIN AND FIRST FEW DAYS OF LIFE. THIS ON TOP OF INABLE SULFATE THAT'S PART OF AUTISM LEADS TO GLUE CATHY I DON'T KNOW DEPLETION AN REDUCE DETOXIFICATION CAPACITY INDUCING OXIDATIVE STRESS AND IMMUNE DISREGULATION COMMONLY SEEN WITH AUTISM. IT'S KNOWN TO CAUSE LIVER DAMAGE KIDNEY DAMAGE, ASTHMA, POSSIBLE AUTISM? SEVERAL ANIMAL STUDIES HAVE SHOWN IT INDUCES APOPTOSIS, NECROSIS AN NEUROTOXICITY. SEVERAL STUDIES HYPOTHESIZED INCREASES APOPTOSIS AN NECROSIS IN THE AUTISTIC BRAIN. A CONSISTENT FINDING IN AUTISM IS LOSS OF PER KINK CELLS IN THE CEREBELLUM. A RECENT STUDY BY DEAN DEMONSTRATED THE USE OF AC EBBTAMINOPHIN AN COX-2 INHIBITORS ALTERED CEREBRAL DEVELOPMENT WITH ATROPHY ONLY IN MALES. A LITTLE HISTORY ABOUT ASEED MINUTE FIN. AFTER SUFFICIENT EVIDENCE EMERGED OF ASSOCIATED BETWEEN ASPIRIN AND RICIN TREATMENT, IT REPLACED ASPIRIN AS PRIMARY TREATMENT FOR PREGNANT WOMEN AN CHILDREN. CONSUMPTION THROUGHOUT THE WORLD INCREASE DRAMATICALLY WITH SIMILAR TRAJECTORY TO AUTISM PREVALENCE RATES. ADMITTEDLY, PARALLEL CORRELATED LINES LIMITED IN UTILITY BUT THIS LINK IS STRENGTHENED BY OBSERVATIONS THAT REMAIN BY BECKER AND SCHULTZ. THEY NOTED IN -- WHEN THERE WAS CONTAMINATION ASEED MINUTE FIN AUTISM HAS THE SAME ANOMALIES AS THE AUTISM PREVALENCE RATES IN THOSE POPULATIONS. >> I'M SORRY TO INTERRUPT WE NEED TO HAVE YOU SOME UP. >> OKAY. SO CONSIDER ACETAMINOPHEN. IT'S HIGHLY PREVALENT, THERE'S A LOT OF BIOLOGICAL PLAUSIBILITY I DIDN'T TOUCH ON. IT HAS THE SAME ALTERCATIONS IN THE EPIGENETIC METHYLATION PATHWAY, MICRORNA, SEROTONIN PATHWAYS, THE MITE CHON MITOCHONDRIA AN BRAIN PATHOLOGY AS AUTISM. >> THANK YOU VERY MUCH. [APPLAUSE] NEXT PUBLIC COMMENT IS FROM BROOK (INDISCERNIBLE). >> GOOD AFTERNOON, YOU'LL BE HAPPY TO KNOW I SLASHED A LOT OF COMMENTS SO HOPEFULLY SHORTER, NOT QUITE AS FLUID. MY NAME IS BROOK (INAUDIBLE), MOTHER OF FOUR CHILDREN. YOUNGEST OF WHOM HAS AUTISM. I'M ALSO FOUNDER OF THE SHIRE SCHOOL WHICH IS A SMALL SCHOOL IN ARLINGTON, VIRGINIA, TO CHILDREN WITH AUTISM. THANK YOU, DR. INSEL AN MEMBERS OF THE COMMITTEE FOR INVITING PUBLIC COMMENT TODAY. I CAME LAST YEAR AS OBSERVER TO THIS VERY COMMITTEE MEETING, THE ONE HELD AT LONG PLAZA AND LEFT WITH A LOT OF THOUGHTS EMOTIONS AND QUESTIONS. SOME I WOULD LIKE TO SHARE TODAY. WHEN I LEFT THE MEETING I HAD FRIENDS AND FAMILY ASK WHAT I THOUGHT. AND I SAID IT WAS LIKE THIS. IT WAS LIKE WATCHING A TOWN COUNCIL WHOSE TOWN IS BEING DESTROYED BY A HUGE FLOOD COMING FROM A DAM. THE FLOOD IS DEVASTATING EVERYTHING IN ITS PATH AND WILL EVENTUALLY DESTROY ALL THAT SURROUNDS IT. THE COUNSEL IS SO BUSY DISCUSSING COUNCIL WHAT LIKE PRESERVERS TO USE, WHAT COLOR -- IF THEY'RE FAILING TO TO US CAN ON THE MOST IMPORTANT FACTOR. WHAT IS THE CAUSE OF THE FLOOD. WHERE IS THE CRACK IN THE DAM OR WHERE ARE THIS SMALL CRACKS IN THE DAM? AND WHAT CAN BE DUB TO REPAIR AND STOP -- DONE TO ER PAIR AND STOP THE FLOOD? I FIND IT INCREDIBLE WE HAVE TECH THENOLOGY AND SCIENCE TO DO SO MANY THING. YOU READ IN THE NEWSPAPER WHEN THERE'S AN E COLO OUTBREAK IT'S NARROWED DOWN TO THE SPECIFIC LEAF AND SPECIFIC FIELD ON A SPECIFIC FARM AND SPECIFIC COUNTRY BUT WE CAN COME UP WITH A COMMON CONSENSUS STATEMENT REGARDING THE ETIOLOGY OF AUTISM. THE BEST WE CAN DO AS STATED BY CENTER FOR DISEASE CONTROL IS IT'S A COMBINATION OF ENVIRONMENTAL AND GENETIC FACTORS. I KNOW AUTISM IS COMPLICATED BUT I DON'T UNDERSTAND WHY AND HOW PREVALENCE NUMBERS FOR THIS ILLNESS CAN GO FROM ONE IN H 10,000, 20 YEARS AGO TO 1 IN 55 TODAY AND WE DO NOT HAVE A PUBLIC HEALTH OFFICIAL GIVING US ANY REAL EXAMINATION. MY NEXT QUESTION WOULD BE IS IT POSSIBLE OR HAVE YOU CONSIDERED EXAMINING MEDICAL RECORDS OF CHILDREN TYPICALLY DEVELOPING AND THEN REGRESS TO AUTISM? THAT WAS WHAT HAPPENED WITH MY SON. SEEMS TO ME SOME ANSWERS TO CAUSATION WOULD BE FOUND IN A WIDE SYSTEMATIC EVALUATION WAS DONE ON THE RECORDS OF THESE CHILDREN. MOST PEOPLE AGREE A MOTHER'S INTUITION IS POWERFUL POTEEN THING. WHAT MY INTUITION TELLS ME WHAT WEAPON WRONG WITH MY SON AN MEDICAL RECORDS BACK UP, I HAVE INTO SITUATION INFORMATION THAT I THINK WOULD BE HELPFUL AND IT WOULD POSSIBLY PREVENT ANOTHER CHILD FROM REGRESSING TO AUTISM. I'M GOING TO SHARE THEE FACTORS THAT I THINK LED TO MY SON'S DISSENT. NUMBER ONE, I RECEIVED IV ANTIBUYIOTICS DURING LABOR AND DELIVERY, IT WAS NECESSARY AS PRECAUTION AGAINST A TRIP B INFECTION. THOSE ANN BOYIOTICS KILLED ALL MY BENEFICIAL GUT FLORA AND DID NOT ALLOW MY SON TO ESTABLISH HIS OWN HEALTHY GUT FLORA WHICH OCCURS IN THE FIRST FEW DAYS OF LIFE. THIS GUT OR BIOSYSTEM IS FOUNDATIONAL FOR IMMUNE HEALTH AND OVERALL HEALTH. MY SON AND I SHOULD HAVE BEEN PRESCRIBED PRO BUYIOTICS TO REPLACE WHAT WAS ELIMINATED AND GIVE HIM A CHANCE AT ESTABLISHING A HEALTHY GUT ENVIRONMENT. TWO, MY SON EF RECEIVED HEPATITIS B SHOT CON FEIGNING MERCURY AT FIVE DAYS OLE AND CLOSE OF THAT WITHIN THE FIRST YEAR OF LIFE. A STUDY IN 2008 TOXICOLOGY AN ENVIRONMENTAL CHEMISTRY DEMONSTRATED A NINE TIMES HIGHER RISK OF DEVELOP HEN TALL DISABLE IN BOYS VACCINATED WITH FULL SERIES OF HEPATITIS B AS COMPARED TO BOYS NOT VACCINATED. POSTPONING THAT SERIES COULD HAVE PREPREVENT HIS AUTISM. HEAVY METAL TOXICITY. THERE'S METAL EXPOSURE IN PLACES AND MANY SOURCES. MY SON'S URINE TOXIC METAL TEST SHOW HIGH LEVELS OF MERCURY LEAD, CADMIUM, WHEN HE STARTED SHOWING SIGNS OF IMMUNE DYSFUNCTION, AND INFLAMMATION AND DEVELOPMENTAL DELAY WOULDN'T IT BE GOOD TO TEST FOR HEAVY METAL TOX FEWCATION? I FOUND IT FIVE YEARS AFTER HE WAS GUT SICK AND TREATMENT FOR HEAVY METALS HAS IMPROVED HIS HEALTH AND SYMPTOMS OF AUTISM A GREAT DEAL. I HAVE MORE REASONS ON MY LIST. THERE ARE TENS OF THOUSANDS OF CHILDREN LIKE THEM HIM. WOULD BIT THAT EXPENSIVE TO HAD BEEN FOR PATTERNS AN TRENDS MEDICAL RECORDS OF THESE CHILDREN? DON'T YOU THINK IT WOULD BE WORTH IT TO GET SOME ANSWERS? CURRENTLY I HAVE NIECES WHO ARE -- THREE NIECES ALL PREGNANT WITH LITTLE BOYS. AND I KNOW THEY WANT TO KNOW HOW TO PREVENT THEIR SONS FROM HAVING A LIFE LIKE THEIR COUSIN. THEY WOULD LIKE TO GET THE INFORMATION FROM THEIR PUBLIC HEALTH AUTHORITY BUT IT ISN'T AVAILABLE AND THAT IS SOMETHING I THINK THIS COMMITTEE SHOULD BE VERY CONCERNED ABOUT. THANK YOU FOR THE OPPORTUNITY TO SPEAK TODAY. I CANNOT THINK OF ANYTHING MORE TRAGIC THAN FACING AMERICA TODAY THAN THE EVER INCREASING RATE OF AUTISM. >> THANK YOU. [APPLAUSE] CLINTON PATOKI. >> HELLO. MY NAME IS CLIP TON. I'M HERE TO SPEAK ON BEHALF OF MY FAMILY AND MY SISTER AND HIGHLIGHTS OF LESSONS LEARNED AROUND REGRESSIVE AUTISM CARE FROM CAN'S RESEN DIRECT WORK WITH THE FAMILY OF ALEX (INDISCERNIBLE) HIS LIFE WAS TAKEN AT AGE 14 BY HIS MOTHER AND GODMOTHER IN A MURDER DOUBLE SUICIDE ATTEMPT. YOU HAVE DON'S COMPLETE COMMENT IN YOUR HAHN OUTS. ONE THE PATIENT CARE SYSTEMS ARE NOT IN PLACE TO SUPPORT THE BASIC MEDICAL NEEDS OF CHILDREN WITH NON-VERBAL REGRESSIVE AUTISM IN PAIN MANAGEMENT, GASTROINTESTINAL ISSUES, SEIZURE DISORDERS AND METABOLIC ISSUES. TWO, WE NEED EXPANDED STANDARDD OF CARE FOR AUTISM AND BELIEVE CONSULTING TEAM AND AUTISM IS MEDICAL OR AIM. TO BE THE GO TO LEADERS IN THE TRENCHES APPROXIMATE ACTION ON THIS ENDEAVOR. AIM USES METHODOLOGIES FOR EXISTING MEDICAL CARE MODEL, ADVISING PARENTS AND HOSPITALS. THE HOSPITAL CONTACTED AIM FOR HELP WITH ALEX. NATIONAL PROGRAM DEVELOPED BY AIM IS BEING OFFERED AS A SOLUTION TO HOSPITALS THE PROBLEM ALEX ENCOUNTERED ARE NOT FIXED AND WE FEAR IT WILL HAPPEN AGAIN. CONSIDER HOW COSTLY THIS IS TO OUR NATION TO HAVE CHILDREN'S UNDERLYING HEALTH ISSUES NO ADDRESSED, PROLONGED ER VISITS AN INCREASED RISKING MANAGEMENT. STARTING LAST FALL ALEX REPEATEDLY ENTERED THE HOSPITAL SYSTEM PRESENTING WITH MEDICAL ISSUES NOT PROPERLY INVESTIGATED. HE WAS IN PAIN, HE HAD A CHANGE IN STATUS WITH SUDDEN AGGRESSION WHICH IN THE PEDIATRICS GI CONSENSUS PAPERERS AN INDICATION OF THE NEED FOR GIC INVESTIGATION. HE WAS NEVER TO RECEIVE A PAIN ASSESSMENT AT ANY OF THE HOSPITALS WHERE HIS FAMILY TOOK HIM SEEKING MEDICAL CARE. THE HOSPITAL STRUGGLED TO GET HEARSAY PSYCH MEDICATIONS CORRECT AND HE HAD ADVERSE REACTIONS. HIS EXPERIENCE EXEMPLIFIES MEDICAL NEGLECT AND DISCRIMINATION AGAINST NON-VERBAL CHILDREN WITH AUTISM. HE HAD BOWEL DISEASE, BY DR. CRICKSMAN AND CONFIRMED BY PILL CAM PROCEDURE THE. BASIC MEDICAL WORKUPS, BLOOD TEST, IMMUNE SYSTEM AND BOWEL DISEASE REVELS WERE NEVER MADE AT THE PEDIATRICIAN OFFICE VISITS. ALEX HAD MANY PROBLEMS WITH DRUGS, HE WAS PRESCRIBED NO ASSESSMENT FOR DRUG ALLERGIES OR INTE HE WAS IN FOUR POINT RESTRAINT FOR OVER 22 DAYS. WITH IMPROPER PEDIATRIC COMPLIANCE ISSUES THAT WERE REPORTED TO PROPER REGULATORY AGENT P SAYS. FAMILY AND THOUSANDS OF PUBLIC CONCERNS AND REPORTS WERE FILED A IF THE HOSPITAL AND THE COMPLIANCE AGENCIES. ALEC WAS DISCHARGED FROM HOSPITAL MAY 31st AFTER THE FAMILY WAS TOLD THEIR INSURANCE WOULD NO LONGER PERMIT THEM TO STAY AND HE WAS MEDICALLY CLEARED AFTER RECEIVED IV DRUGS JUST DAYS BEFORE, NINE DAYS LATER HE WAS DEAD. WE REQUEST SPECIAL POPULATION IS EXPAPPED WITH PHYSIOLOGY AT THE HEART OF THE CARE MODEL. AUTISM IS MEDICAL. THANK YOU. [APPLAUSE] >> WENDY FOURNIER. >> GOOD AFTERNOON, I'M WENDY FOURNIER, PRESIDENT OF NATIONAL AUTISM ASSOCIATION HERE TO MAKE A STATEMENT ON BEHALF OF OUR ORGANIZATION. DURING THE PUBLIC COMMENT PERIOD AT YOUR LAST MEETING HERE IN APRIL OUR EXECUTIVE DIRECTOR DISCUSSEDDED SERIES OF CO-OCCURRING MEDICAL CONDITIONS THAT AFFECT INDIVIDUALS WITH AUTISM. AND LORI SHOWED YOU A VIDEO OF CLIPS SUBMITTED TO US BY PARENTS SHOWING CHILDREN SCREAMING, HAVING GRAND MALL SEIZURES THROWING THEMSELVES TO THE FLOOR, HEAD BANGING. FOR A LOT OF FAMILIES IN THIS COMMUNITY THAT'S SNAP SHOT OF JUST THEIR DAY. TO DOCUMENT SOMETHING LIKE THAT HAPPENING WITH YOUR CHILD. THESE ARE FAMILIES THAT CAN NOT BE NECESSARY ROOM TO SHARE THEIR EXPERIENCES WITH YOU. TAKING CARE OF THEIR CHILD 24/7 AND CANNOT LEAF. THESE ARE THE KIDS AND ADULTS NOT ABLE TO SELF-ADVOCATE, SPEAK FOR THEMSELVES. SO WE ASK FAMILIES TO SUBMIT THE VIDEO CLIP AND WE HOPE THAT PEOPLE CONTINUE TO TO THAT, EVERYONE IS AWARE OF THE SERIOUS MEDICAL ISSUES. UNLIKE DR. PERRIN, WHAT A PLEASURE TO MEET HIM TODAY, UP LIKE DR. PERRIN AND DR. FRYE AND DR. BUIE, I THINK YOU HAVE THOUSANDS OF AUTISM MOMS ACROSS THE COUNTRY WHO WOULD LIKE TO HAVE YOUR BABIES NOW. BUT OTHER THAN THESE GUYS IN GENERAL PHYSICIANS ARE UNAWARE OF THE MEDICAL ISSUES THAT OUR KIDS FACE AND WE'RE DEALING WITH ALL THE TIME. IT'S NOT UNCOMMON TO HEAR FROM PARENTS WHO SAY THEY TOOK THEIR CHILD TO AN ER ACTING OUT THEY KNEW THE CHILD WAS IN PAIN AN PHYSICIAN SAID YOUR CHILD HAS AUTISM, THERE'S NOTHING PHYSICALLY, IT'S BEHAVIORAL THAT'S HOW KIDS WITH AUTISM BEHAVE. THAT HAS GOT TO STOP. SO I'M HAPPY TO SEE DOCTORS IN THE AGENDA TODAY THE PARENT COMMUNITY HAS BEEN SAYING THE KIDS ARE SICK FOR PROBABLY 15 YEARS NOW. SO I'M GLAD WE'RE STARTING TO CATCH UP. PROBLEM IS, THE MAINSTREAM MEDICAL COMMUNITY IS NOT AWARE OF THESE ISSUES SO WE DO NEED TO EXPAND IT. I HOPE DR. PERRIN IS GOING TO MAKE A BIG DIFFERENCE. ALSO LYNN REDWOOD STARTED TOUCH SUGGESTING IACC WORK TOGETHER WITH THE ARCAP. AUTISM IS TOO BIG FOR YOU GUYS. THERE'S TOO MUCH GOING ON. COMMITTEE THAT MEETS FOUR TIME AS YEAR CAN NOT FIX EVERYTHING WITH AUTISM SO WE NEED TO THINK BIGGER. BUT LYNN'S SUGGESTION WORKING WITH ARCAP, ALSO AMA, NATIONAL ORGANIZATIONS LIKE THE NATIONAL AUTISM ASSOCIATION WOULD BE HAPPY TO HELP. I DO THINK STAKEHOLDER INVOLVEMENT IS KEY. ALSO AGAIN PARENTS HAVE BEEN SAYING THESE THINGS FOR YEARS NOW. WE CAN JUMP START THE, THERE WAS A STUDY THAT SAY WE AND AUTISM THERE'S A CONNECTION THERE. IF YOU ASK THE MOM TENURE AGO WE COULD HAVE ANSWERED THAT QUESTION FOR YOU. END POINT IS, WE DO NEED TO TREAT THE INDIVIDUAL, NOT TREAT AUTISM, THERE ARE UNDERLYING MEDICAL CONDITIONS. THANK YOU FOR ADDRESSING THOSE TODAY. [APPLAUSE] WE WANT1 DISCUSSION. WE HAVE A NUMBER OF GUESTS FOR THE SESSION SCHEDULED TO BEGIN AT 2:30, SO I SUGGEST WE SKIP THE BREAKS AND TAKE A FEW MINUTES FOR COMMITTEE DISCUSSION THEN TRY TO GET INTO THE 2:30 SESSION AS QUICKLY AS POSSIBLE. SCOTT. >> ONE COMMENT I WANT TO MAKE SINCE IT WAS PREVALENT IN A FEW PUBLIC COMMENTS WAS THE MURDER OF ALEX IN MICHIGAN. I WORRY AND I HAVE CONCERN IN A LOOF MY OTHER COLLEAGUES AND ALLIES HAVE CONCERNS AROUND THE COUNTRY, SOMETIMES WHEN AUTISTIC PEOPLE ARE KILLED, MURDERED BUT OTHER PEOPLE WITH DISABLES THAT WE JUSTIFY THAT KILLING SAYING LIFE WAS SO HORRIBLE, YOU NEED TO PROVIDE THE RIGHT SUPPORTS AND SERVICES FOR FOLKS. BUT WE SHOULD ALSO RECOGNIZE LIKE MURDER IT SHOULD NEVER BE JUSTIFIED OR CONDONED. IT SHOULDN'T BE AS CONVERSATIONS WE NEED TO IMPROVE SUPPORTS APPROXIMATE SERVICES WE TALK ABOUT SEASON LIFE WHO HORRIBLE? IT'S OKAY SO AND SO KILLED THEIR KID AND NO IT WAS NOT OKAYTOR THAT TO HAPPEN. THAT WORRIES WHEN I HEAR THE THEME COME UP OFTEN WITH FOLK WHOSE ARE SUBJECT TO A LOT OF ADVERSE SITUATIONS. AS AUTISTIC PEOPLE IN THE UNITED STATES ABUSE, NEGLECT, HARASSMENT AND ALL SORT OF FACETS THAT HAPPEN, SOMETIMES WE DON'T LOOK AT THE PERSON, WE LOOK AT EVERYBODY ELSE AROUND THEM AND NOT PERSPECTIVE TAKE THAT THERE NEEDS TO BE BETTER EMPOWERMENT AND UNDERSTANDING CRIMES AND VICTIMIZATION OF AUTISTIC PEOPLE. THANKS. >> I HOPE THERE WAS NO MISUNDERSTANDING. I DON'T THINK WE HEARD TODAY ANYBODY BLAMING THE VICTIM HERE. >> QUICKLY CLARIFY, I DON'T MEAN DIRECTLY FROM THE STATEMENTS, I WANT TO WRITE IN REFERENCE TO THE THEME BECAUSE OFTEN THE THEME OF WHEN FOLKS -- IT COMES UP IN THESE DISCUSSIONS ABOUT NEWSPAPERS, ET CETERA. , IT'S LIKE WELL NO BIG DEAL THIS MURR HAPPENED. MEDIA REPORTS SURROUNDING HIS MURDER HAVE THAT THEME GOING ON. I'M NOT SAYING THAT ANYTHING THAT WAS SAID TODDLE FLECKED THAT, I'M JUST SAYING THAT'S THE GENERAL CONCERN IN MY HEAD RELATED TO ALEX'S STORY AND THE STORY OF A LOT OF OTHER AUTISTIC PEOPLE THAT HAVE BEEN MURDERED OR KILLED OR PEOPLE WITH DISABILITIES THAT WE HELP AROUND SHOWING TO INNOVATE SUPPORTS AND SERVICES SO THAT DOESN'T HAPPEN. >> WANT TO MAKE SURE WE UNDERSTOOD THAT. >> THANK YOU FOR THE OPPORTUNITY TO BE HERE TO LEARN SO MUCH TODAY FROM SO MUCH NEW INFORMATION FOR ME. I CAME TO BE A TEACHER EDUCATOR BECAUSE OF MY FRUSTRATION WITH SCHOOLS. I TEACH TEACHERS WHEN SOMEBODY HAS A DIFFERENT BEHAVIOR IN SCHOOLS AS IN OTHER PLACES, IT'S WRITTEN OFF, NOT LOCKED AT, NOT ANALYZED. THERE COULD BE NO BIGGER REASON RIGHT NOW FOR CROSS-SYSTEM COLLABORATION THAN RIGHT NOW WITH THE INFORMATION THAT WE HAVE GOTTEN TODAY T. I CONSULT IN SCHOOL, I HAVE STUDENT TEACHERS IN SCHOOLS AND WHEN SOMEBODY DISPLAYS SOME OF THE BEHAVIORS SUCH AS WE SAW IN THE VIDEOS TODAY, EVERYBODY IS WRITTEN OFF, EVERYBODY IS WRITTEN OFF. THE INDIVIDUAL -- NO THOUGHT HOW CAN WE WORK WITH THE FAMILY TO GET THE PROPER MEDICAL KIND OF SUPPORT? IT'S JUST -- THE DOOR SHUT AND IT'S WRITTEN OFF. I SEE THAT IN THE ADULT SYSTEM, WHEN ANYBODY HAS DIFFERENT KIND OF BEHAVIORS. SO I THINK WE HAVE GOT TO USE THIS INFORMATION AS A WAY TO ENCOURAGE SYSTEMS TO WORK TOGETHER. VOCATIONAL REHAB, IF THEY HAVE DIFFERENT BEHAVIORS THEY' EAR DEEM NOT READY TO WORK. IN SCHOOL DEEMED TOO CHALLENGING. UNSAFE FOR OTHER PEOPLE. JUST AS SCOTT WAS TALKING ABOUT, THEN THERE COMES TO BE THIS NOBODY MEANS BUT BUT IT BECOMES A SENTIMENT EVERYTHING BEING AGAINST THE INDIVIDUAL WITH AUTISM OPPOSED TO WHAT ARE THINGS WE ALL NEED TO DO TO WORK TOGETHER TO SUPPORT THAT PERSON WHETHER MEDICAL, BEHAVIORAL AFTER ONE YEAR ON THIS COMMITTEE WE LEFT SCHOOLS COMPLETELY UNACCOUNTABLE. THIS IS NOT BROUGHT UP AS A DISCUSSION. I WANT THERE TO BE MORE EMPHASIS WITH US ON HOW IT IS WE DO INVOLVE SCHOOL IN ALL THIS CROSS COLLABORATION TO SUPPORT INDIVIDUALS. >> JOHN. >> IF I MIGHT SPEAK TO THAT LAST COMMENT, WE DO HAVE SOME FAIRLY MAJOR GOVERNMENT FUNDED INITIATIVES LIKE SENOR FOR SECONDARY EDUCATION FOR STUDENTS WITH AUTISM. DIRECTED AT IMPROVING THE POST HIGH SCHOOL OUTCOMESn PEOPLE GROWING UP WITH AUTISM. I ACTUALLY THINK THAT GROUPS LIKE SESA ARE A COMBINATION OF PEOPLE IN EDUCATION AND PEOPLE IN AUTISM AND MEDICAL SCIENCE WHICH ARE KNOWN TO FOLKS HERE. AND I DO FEEL THAT WE ARE MOVING IN THAT DIRECTION AND MIGHT NOT BE A BAD IDEA TO HAVE MORE REPRESENTATION FROM THE DEPARTMENT OF EDUCATION IACC BUT I BELIEVE WHAT SHE IS ASKS IS HAPPENING THOUGH WE DONE DISCUSS IT RIGHT AWAY. >> I WANT TO THANK THE FAMILY WHOSE WROTE IN PUBLIC COMMENT AND TOOK TIME TO TRAVEL TO TALK TO THIS COMMITTEE. I FINE IT POSSIBLE TO ADDRESS ALL THE COMMENTS, WONDERING IF THERE MIGHT BE A MECHANISM WHERE THE COMMITTEE RESPONDS BACK FORMALLY TO SOME OF THE COMMENTS. THE TAKE HOME MESSAGE THAT I HEARD, WE NEED TO LISTEN TO THE FAMILIES AND THEIR REPORTS. AND THEIR RECOMMENDATIONS FOR RESEARCH, WHETHER VACCINES ANTIBIOTIC, GIVEN AT BIRTH, ACETAMINOPHEN. CORD CLAMPING EARLY, I THINK WE NEED TO LET THEM KNOW THAT'S ON OUR RADAR SCREEN AND WE'RE GOING TO TRY TO INCORPORATE THOSE SOMEWHERE IN OUR STRATEGIC PLAN, OR MAYBE THEY'RE THERE IN OUR STRATEGIC PLAN BUT WE NEED TO LET THEM KNOW WHAT OUR RESPONSE IS TO THAT. WE HEARD OVER AND OVER AGAIN UNMET MEDICAL NEEDS, I DON'T KNOW IF THIS IS THE PLACE OR DURING THE DISCUSSION LATER THIS AFTERNOON BUT IT'S SOMETHING WE YOU ARE GENERALLY NEED TO ADDRESS WITH A SUBCOMITTEE -- URGENTLY NEED TO ADDRESS WITH SUBCOMITTEE OR TASK FORCE WORK GROUP TO WORK ON THINGS WE HAVE IDENTIFIED IN THE STRATEGIC PLAN WHICH ARE BASICALLY STANDARDS OF CARE FOR EVALUATION AND TREATMENT. I ALSO THINK THERE IS A NEED TO RE-ESTABLISH THE SAFETY SUBCOMITTEE, IT'S SOMETHING OFF THE RADAR SCREEN WITHIN THE COMMITTEE. ALEX AND I HAD SEVERAL PRODUCTIVE MEETINGS WITH THE PAST IACC AND I THINK IT'S CRITICALLY IMPORTANT TO BRING THAT FORMATION OF THAT SUBCOMITTEE BACK. THOSE ARE MY RECOMMENDATIONS FOR TODAY. >> LET ME IN THE INTEREST OF TIME FOLLOW-UP AND MOVE TO THE NEXT SESSION. I H THINK YOU BRING UP THE KEY QUESTION WHICH IS SOMETHING MANY OF US FEEL AT THE SAME TIME, WE'RE HEARING PASSIONATE TESTIMONY FROM PEOPLE WHO ARE IN THE TRENCHES AND GET THEIR THREE MINUTES AN SEND SOMETHING IN AND NAVE TRAVELED FROM MICHIGAN, CALIFORNIA, OR FLORIDA TO SHARE WITH US. MANY SENSE THERE'S NO RESPONSE, TALKING TO A WALL INSTEAD OF A GROUP OF PEOPLE EMPOWERED TO BE RESPONSIVE TO PUBLIC NEEDS. HOW DO WE DO THAT? WHAT IS THE BEST MECHANISM? BY RESPONSE I DON'T MEAN NECESSARILY JUST THE DIUSSION WHICH WE HAVE SCHEDULED AND HERE ABBREVIATED BUT ACTUALLY WHETHER THERE ARE WAYS OF DRAWING THE LINES BETWEEN COMMENTS WE HEAR AND WRITTEN COMMENTS AS WELL WE DON'T TALK ABOUT AS FORMALLY. THEN OUR TACHTORY RESPONSIBILITIES OF ADVISING THE SECRETARY, PROVIDING A STRATEGIC PLAN, UPDATING THE PLAN, AND MONITORING PROGRESS. IT'S NOT CLEAR TO ME WHERE THOSE LINES GET DRAWN. WE 30, 35 MINUTES SET ASIDE FOR THIS. THERE ARE SUBSTANTIVE REMARKS WHICH GO UNANSWERED. WHAT IS THE RIGHT PROCESS FOR US BESIDES HAVING A BRIEF DISCUSSION ABOUT IT TO TAKE FROM THOSE COMMENTS SOMETHING A LITTLE MORE RESPONSIVE BUT CONSTRUCTIVE BECAUSE THERE IS REAL DATA IN WHAT WE ARE HEARING. IT DOES FEEL TO ME LIKE IT'S NOT ADDING UP TO ANYTHING OTHER THAN LISTENING A SOUNDING BOARD. SO NOT ASKING FOR AN ANSWER BUT COULD I INVITE EVERYBODY TO THINK ABOUT THIS IN THE WHICH LIP SUGGESTED AND TAKE SOME TIME TO PUT OUR HEADS TOGETHER AND CONSIDER BEST WAY TO RESPOND. >> UNLESS THERE'S ANY OTHER PRESSING COMMENTS, GIVEN WHERE WE ARE, WALLER. >> DO WE TALK ABOUT GETTING DEPARTMENT OF JUSTICE TO THE TABLE?J >> THEY ARE WAITING TO PARTICIPATE. PERFECT SEGUE. WE WILL SKIP THE BREAK AND PUT US ON SCHEDULE, ABOUT FIVE MINUTES BEHIND. WE HAVE FOLLOW UP DISCUSSIONS AT VARIOUS TIMES, LET ME MENTION SAFETY COMMITTEE PROCESS BACK TO THE COUPLE OF TIMES OVER THE LAST TWO YEARS SO THIS IS A CHANCE TO DIG DEEPER ON ISSUES, THERE WAS A REQUEST FROM THE DEPARTMENT OF JUSTICE AND WE HAVE JEFF SLOWIKOWSKI WITH US WHO APPRECIATE YOU BEING HERE TO HELP US UNDERSTAND THE DOJ PERSPECTIVE. ALSO THE EXECUTIVE DIRECTOR OF MISSING CHILDREN TUITION OF NATIONAL CENTER FOR MISSING EXPLOITED CHILDREN, ROBERT LOWERY WHO IS HERE. THEN WENDY FOURNIER WHO WAS THE PERSON THAT BROUGHT THIS TOPIC TO THE IACC INITIALLY. MANY YEARS AGO. FOUR OR FIVE YEARS AGO. GOT US STARTED DOWN THIS PATH. WHOA IACC HAS DONE NOW. THE WAY THIS IS SCHEDULED, WHAT DO WE KNOW, WHAT DO WE NEED. ALISON WILL TAKE US TO UP TO DATE WITH WHAT WE HAVE DONE AND THEN WE'LL HEAR FROM OTHER GUESTS ABOUT THE AMBER ALERT PROGRAM AND OPTIONS THERE TO DEVELOP SOMETHING THAT COULD BE A SOLUTION. FROM Z >> I'M GOING START FOR THOSE NOT FAMILIAR WITH THE ANDING ARE ISSUE, I WILL START WITH A VIDEO THAT SAYS A LOT MORE THAN MY WORDS. >> AUTISTIC BOY FOUND DEAD IN A SWIMMING POOL. HOLDING OUT THAT HE WAS HIDING. >> BODY WAS FOUND A COUPLE OF HOURS AGO. >> AN AUTISTIC BOY WANNERS FROM HOME AND DIES. >> WE UPDATE ON HISSING PERSONS LIST, WE UP DAY CASUALTIES AND WE HAD A LITTLE BOY KILLED BY A TRAIN, 12 YEARS OLD. >> TROY TO GO ALONG THE SHORE, WENT DEEP I THOUGHT MAYBE I HAD HER, AT ONE POINT. >> THEN THERE ARE STORIES WHERE THE CHILDREN BEAT THE ODDS. >> IF YOU KEEP ASKING QUESTIONS LIKE THAT I'LL BE UP HERE. THERE'S A LOT OF EMOTION IN THIS. >> AS SHE'S BEEN CARRIED OUT. WHAT A WONDERFUL HAPPY ENING TO THIS. >> AT NAA WE FOCUS MORE ON SEVERE SIDE OF AUTISM. >> I KNOW. YOU'RE VERY FRUSTRATED. >> SEIZURES HEAD BANGING INSOMNIA, CRIPPLING BOWEL DISEASE, DEBILITATING FEAR, OVERWHELMING SENSORY DYSFUNCTION HEIGHTENS SELF-INJURY, IT DEFINES YOUNG APPROXIMATE OLE WHO ARE SEVERELY IMPACTED AND CONSTANT PREVENTION AND SURVIVAL MODE. >> THE NATIONAL AUTISM ASSOCIATION IS A PARENT-RUN ORGANIZATION. THIS ISSUE WAS HOME FOR US. MY SON WANDERED FROM MULTIPLE SCHOOL SETTINGS. OUR PRESIDENT HER DAUGHTER IS AN ACTIVE WANDERER. WE KNOW HOW HARD IT IS TO KEEP OUR KIDS SAFE. >> THERE'S A HUGE LACK OF RESOURCES. IT'S HAWAII NAA CREATED SAFETY NICHE LIKE SAFETY BOX FOUND PROGRAM, THE AWARE LAB COLLABORATION, AND AUTISMSAFETY.ORG. AUTISM PARENTS ARE STRONG, DEDICATED. >> GOOD JOB. >> SO LITTLE RESOURCES FOR THE FAMILIES. WHAT DO YOU DO WHEN YOU LIVE THE NEXT -- AND YOUR CHILD IS CONSTANTLY TRYING TO GET TO THE POND. WE SAW FIRST RESPONDERS TO SEARCH WATER FIRST, A LOT OF TIMES OUR KIDS WILL NOT RESPOND TO VERBAL>. COMMANDS, THEY WON'T RESPOND TO THEIR NAME. THEY WON'T RESPOND TO STOP. SO YOU HAVE TO JUST GET IN THERE AND GET THEM. >> LOOK AT THE VIDEO AND SEE A HAPPY EPIING. YOU HAVE TO LOOK AT THE VIDEO AND IMAGINE IF THAT PERSON WAS B THERE WITH RYAN, LISTEN TO RYAN'S CRY AND KNOW THERE'S SO MANY CHILDREN WHO DIED THIS WAY WITHOUT EVEN THE ABILITY TO CRY OUT FOR HELP. WE HAVE TO LEARN FROM THOSE CHILDREN. HONOR THEIR STORIES. MAKE SURE THAT IT DOESN'T HAPPEN TO OTHER CHILDREN. THESE DEATHS ARE PREVENTABLE. >> I WANT TO THANK LORI AND CHRISTIAN (INDISCERNIBLE) FOR PUTTING THAT VIDEOING TO FOR US. SO TO UPDATE, WE TALKED ABOUT WANDERING, LORI MCELWAYNE HERE DURING PUBLIC COMMENT IN APRIL 2010 AND WE WERE INVITED BACK BY THE COMMITTEE IN OCTOBER OF 10 TO PRESENT ON WHAT WE KNEW ABOUT THE ISSUE. AND WHAT WE DID AT THAT TIME IS WE GAVE YOU CASE STUDIES WHAT WE WERE DOING IN THE COMMUNITY, WE TALKED ABOUT THE CURRENT AMBER ALERT CRITERIA, THE NEED FORCAT BECAUSE WE DID KNOW ANECDOTALLY WE SAW WANDERING AN KIDS WERE DYING BUT WE DIDN'T HAVE DATA APPROXIMATE WE NEEDED IT FOR RESOURCES. ALSO SCHOOL RESPONSE PROTOCOLS, WE TALK ABOUT A COMPARISON OF RESOURCES FOR THE AUTISM COMMUNITY VERSUS THE ALZHEIMER'S IMMUNITY. THEY HAVE A LOT OF RESOURCES TO ADDRESS ITND OUR KIDS DO NOT. WE TALK THE NEED FOR AWARENESS, RESOURCES POLICIES AN TRAINING. TRAINING, TRAINING, TRAINING. I CANNOT EXPRESS THAT ENOUGH. WE ALSO DISCUSSED MEDICAL DIAGNOSIS CODES, THE FACT THAT WE THOUGHT WE NEEDED ONE AND EFFECT OF WANDERING ON FAMILIES. THEN IACC SUBCOMITTEE ON SAFETY ISSUES ESTABLISHED THAT DAY, UNPRECEDENTED MOVE IACC. THANK YOU, LYNN AND ALISON AND JERRY DAWSON FOR MOVING SO QUICKLY THAT DAY TO ESTABLISH THAT COMMITTEE. SINCE THEN, WE HAVE AN ICD-9 DIAGNOSIS CODE FOR ANDING ARE AND DISEASES CLASSIFIEDED ELSEWHERE. NOTE THIS DOES NOT SAY ANYTHING ABOUT AUTISM, AUTISM IS NOT CONNECTED TO THAT DIAGNOSIS CODE. THIS IS PUT IN TO EFFECT CKC COLLEEN BOIL AND CATHY RICE. THEY ACTUALLY AGREE, THOUGHT IT WAS A GOOD IDEA AND WHEN AHEAD AND PUT IN THE REQUEST FOR THAT TO BE ADDED TO ICD-9. AND P MEANTIME THE IACC SUBCOMITTEE WAS ARGUING WHETHER OR NOT WE NEEDED TO ADDRESS WANDERING. SO NOW WE HAVE THE DIAGNOSIS CODE. MY HOPE IS, WE TOUCHED ON THIS BRIEFLY, PHYSICIANS ARE GOING TO BECOME AWARE OF THIS AND START ADDING IT AS A DIAGNOSIS FOR SOME OF OUR KIDS. ONE REASON WE ASKED FOR IT, IS SO THAT THINGS LIKE TRACKING DEVICES, MONTHLY FEES INVOLVED, CONSIDERED MEDICALLY NECESSARY DEVICES TO KEEP KIDS PROTECTED AND HOPEFULLY ABLE TO GET INSURANCE COVERAGE ON THOSE TYPES OF DEVICES. SO THE SAFETY SUBCOMITTEE FEBRUARY OF 2011 HAS THEIR FIRST EVER LETTER TO SECRETARY SEBELIUS AS AN ADVISORY COMMITTEE TO THE SECRETARY OF HHS, THE FACT THAT IT TOOK THAT LONG TO SEND THE FIRST EVER LETTER TO THE SECRETARY ADVISING HER OF AN ISSUE WAS PRETTY SERIOUS. I'M GLAD IT WAS ABOUT THE ANDING ARE ISSUE. I WAS DISAPPOINTED IN HER RESPONSE WHICH WAS BASICALLY A FORM LETTER SAYING FILL OUT WE'LL GIVE CONSIDERATION TO THOSE RECOMMENDATIONS AND NOTHING HAS BEEN DONE SINCE THEN. SO ONE THING THAT I MENTIONED IS WE NEED DATA TO SHOW HOW OFTEN WANDERING WAS HAPPENING THE THE COMMUNITY. AGAIN, WE DID NOT WANT TO WAIT ON THIS SO STARTING THATTY IN OCTOBER LIP REDWOOD,IERRY DAWSON, ALISON SINGER, MYSELF, LORI MCELWANE BERG MADE PHONE CALLS AND WE HAD IT FUNDED IN LESS THAN 48 HOURS. SO STUDY WAS FUND AND THE QUESTIONNAIRE WAS DESIGNED AND EVENTUALLY PUBLISHED IN THE JOURNAL OF PEDIATRICS, HAPPY TO SAY, AND WE NOW HAVE SOME DATA ON WANDERING. INITIAL DATA. ACCORDING TO THAT QUESTIONNAIRE IS ROUGHLY HALF CHILDREN WITH AUTISM, ATTEMPT TO ELOPE FROM A SAFE ENVIRONMENT WHICH IS A RATE OF FOUR TIMES HIGHER THAN UNAFFECTED SIBLINGS, WE ASK THAT BECAUSE WE WANT TO SHOW WANDERING IS NOT AN ISSUE OF NEGLECTFUL PARENTING. MAYBE IN SOME CASES BUT MOST PART THESE ARE NOT NEGLECTFUL PARENTS. MORE THAN A THIRD WHO WANDER ARE RARELY ABLE TO OR ARE NEVER ABLE TO TELL YOU WHAT THEIR AIM IS OR WHERE THEY -- WHAT THEIR NAME IS OR WHERE THEY LIVE. HALF THE FAMILIES ELOPERS NEVER RECEIVED A VICE FROM A PHYSICIAN OR PROFESSIONAL. THE EFFECTS ON P THE FAMILY, WE ARE LIVING UNDER GREAT STRESS. LOWER QUALITY OF LIFE, A LOT OF US SUFFER FROM SLEEP DEPRIVATION, LACK OF SUPPORT UNDERSTANDING RESOURCES. FAMILIES HAVE FEAR OF INVOLVEMENT FROM BPS OR LAW ENFORCEMENT, THEIR CHILD DOES ELOPE AND AFRAID OF AQUEUIZATION OF NEGLECT. CPS WORKERS HAVE TAKEN CHILDREN WHO WANDERED FROM THE CUSTODY OF THEIR PARENTS. WE NEED TO START EDUCATING CPS ORERS THAT THIS IS PART -- THIS IS A BEHAVIORAL ISSUE WITH AUTISM, PROBABLY MEDICALLY BASED BEHAVIORAL ISSUE WE NEED TO STUDY BUT INSTEAD OF RIPPING A CHILD FROM THEIR HOME WE NEED RESOURCES FOR THAT FAMILY TO HELP THEM KEEP THEIR CHILD SAFE. 62% INVOLVED IN THE STUDY SAID THEY WERE PREVENTED FROM ENJOYING OUTDOOR ACTIVITIES, OR ACTIVITIES OUTSIDE THE HOME BECAUSE THEY WERE TERRIFIED THEIR CHILD WOULD WANDER AND BE INJURED OR KILLED. 40% HAVE -- SUFFER SLEEP DISRUPTION DUE TO FEAR OF ELOPEMENT, WE HAD PARENTS CALL AND TELL US THAT THEY SLEEP IN THE HALLWAY OUTSIDE THE DOOR OF THEIR CHILD'S BEDROOM OR THEY MOVE THE COUCH IN FRONT OF THE FRONT DOOR AND THEY SLEEP ON THE COUCH SO THEY KNOW THEIR CHILD CAN'T GET OUT THE FRONT DOOR IN THE MIDDLE OF THE NIGHT. SOME DISCUSSION THAT WENT ON WITH THIS SAFETY SUBCOMITTEE WAS THERE WAS DISAGREEMENT WHETHER WE SHOULD ADDRESS THIS ISSUE OR IF ADDRESSING WANDERING WOULD PUT THE BIG UMBRELLA ON EVERYBODY WITH AUTISM AND WE WOULD RESTRICT THAT PERSONAL FREEDOM, PUT TRACKING DEVICES ON THEM AND WE WOULD PREVENT THEM FROM HAVING SELF-DETERMINATION. I DO NOT WANT MY 13-YEAR-OLD DAUGHTER WALK OUT OF THE HOUSE AT 3 IN THE MORNING TO GO TO THE NEAREST POND OR POOL. THAT SELF-DETERMINATION IS A SKILL SHE DID NOT NEED TO HAVE. THIS IS NOT ABOUT RESTRICTING ANY FREEDOMS FOR ANYBODY, THIS IS ABOUT KEEPING THOSE WHO ARE AT RISK, SERIOUS RISK RESOURCES TO KEEP THEM SAFE. THIS IS NOT ACROSS THE BOARD YOU HAVE AUTISM WE'RE PUTTING A TRACKING DEVICE ON YOU. I WANT TO MAKE THAT PERFECTLY CLEAR BECAUSE THERE IS NO ROOM FOR ARGUMENT ON THIS ISSUE WHILE OUR KIDS ARE DYING. THE RISK CYCLE L AFFECT ON THE FAMILY WE MADE A GRAPHIC TO SHOW HOW EXHAUSTING IT IS. THE CHILD CAN'T CONVENIENCE PARENTS CAN'T P SLEEP, THE NIGHTTIME DANGERS ARE NONE OF US REALLY SLEEP, IT'S A SLEEP THAT YOU HAVE WHEN YOU HAVE AN INFANT IN THE HOUSE, YOU NEVER REALLY SLEEP. YOU'RE ALWAYS LISTENING. THE PARENTS ARE JUST COMPLETELY EXHAUSTED AND OVERWHELMED AND P WE GET SO MANY CRIES FROM PARENTS THAT TELL ME THEY DON'T KNOW HOW MUCH MORE THEY CAN TAKE. IT'S EXHAUSTING. THEY NEED SUPPORT. SO IN ADDITION TO THE IAN STUDY NAA IS COLLECTING DATA ON ANDING ARE. WE COLLECT -- ON WANDERING. THIS IS A SERIOUS WANDERING ISSUE, SERIOUS ENOUGH SO THAT THE MEDIA ACTUALLY BAM AWARE OF IT. A SEARCH WAS PROBABLY INVOLVED AND WE HAVE BEEN KEEPING TRACK OF THOSE. THE LETHAL YOU COMES IN CASES FROM 2009 TO 2011, ACCIDENTAL DROWNING ACCOUNTED FOR 91% OF THE DEATHS ASSOCIATED WITH WANDERING. 68% DIED IN NEARBY POND LAKE CREEK OR RIVER. 23% WERE IN THE CARE OF SOMEONE OTHER THAN PARENT SO A GRANDPARENT, A FRIEND, BABYSITTER, POSSIBLY A TEACHER. INTERESTINGLY WE DON'T KNOW WHY, OUTCOMES IN WANNING ARE IN GIRLS THE LETHAL OUTCOMES WERE TWICE AS HIGH AS THEY WERE FOR BOYS FOR SOME REASON. WE LIKE TO KNOW. WANDERING OCCURS THE SETTINGS AND ALL SUPERVISION. BASED ON MONITORING WE EAR SEEING TRENDS DURING WARMER MONTHS, WHEN SPRING HITS WE SEE EXPLOSION OF WANDERING INCIDENTS. WE THINK IT IS COLLIMATE RELATED ESPECIALLY IN AREAS OF THE COUNTRY LIKE THE NORTHEAST WHERE I LIVE, YOU HAVE BEEN CLOSED UP ALL WINTER, SPRING HITS YOU START OPENING THE WINDOWS YOU MIGHT HAVE WINDOW FANS IN, YOUR SCREEN DOORS ARE OPEN AND THE KIDS SUDDENLY HAVE AN EASY WAY OUT. SECURITY PATTERNS CHANGE IN THE HOME AS SEASONS CHANGE. I AM CON STANLEY ONCE SPRING COMES I'M REMINDING EVERYBODY TO LOCK ALL THE LOCKS ON OUR DOORS TO KEEP HE WILL FROM WALKING OUT OF THE HOUSE. WE SEE TRENDS, FREQUENCY. CERTAIN EVENTS YOUR CHILD IS LESS LIKELY AT RISK, THAT INCLUDES TRANSITION, MOVING TO A NEW HOME, FAMILY GATHERINGS AND PARTIES. WE SEE CHIDES KIDS THAT JUST WALK AWAY DURING AN OUTDOOR BARBECUE SITUATION, SOMETHING LIKE THAT. CATCHING APPROXIMATE HIKING, DON'T TAKE THEM CAMPING OR HIKING IN THE WOODS UNLESS YOU HAVE TWO PARTS ONE ON EACH SIDE SO YOU HAVE BOOKENDS BUT WE SEE KIDS THAT DISAPPEAR IN THOSE SITUATIONS. THEN DURING TIMES OF STRESS OR BOLTING. MY DAUGHTER DOES TWO TYPES. SHE WILL TRY TO GET TO THE NEIGHBOR'S SWIMMING POOL IN ONE INSTANCE AND IN ANOTHER SHE'LL BECOME OVERWHELMED ON A SENSORY ISSUE AND SHE WILL BOLT AWAY FROM ME. I ALMOST GOT ARRESTED ONCE IN AN AIRPORT BECAUSE SHE DID THAT. SHE BOLTED THROUGH SECURITY AND A SECOND TIME ALSO IN AIRPORT SITUATION SHE BOLTED INTO TRAFFIC AND THANK GOODNESS I HAD A TETHER FROM MY WRISTSz„ TO HEARSE BECAUSE SHE PROBABLY WOULD HAVE BEEN DEAD. BUT AS YOU CAN SEE THE STRESS NOT ONLY ON THE CHILD WILL TRIGGER THE WANDERING BUT THE STRESS ON FAMILIES IS REALLY SOMETHING THAT WE NEED TO HELP WITH. I HAD A HEART ATTACK IN JANUARY. I'M TALKING STRESS. I HAD A HEART ATTACK AND CARDIAC ARREST AND I WAS DEAD IN JANUARY. SO WE NEED HELP AS A FAMILY. SO IN ORDER TO TRY TO HELP THE FAMILIES NAA CREATED RESOURCES FOR PREVENTION. WE ESTABLISH AD BIG RED SAFETY BOX PROGRAM IN 2011, SO FAR WE PROVIDED 7,500 FAMILIES WITH PREVENTION TOOLS AN EDUCATIONAL MATERIALS. THESE BOXES BASICALLY ARE VISUAL AIDS, STOP SIGNS PUT UP IN THE HOUSE, FORMS GIVEN THE FIRST RESPONDERS, SAMPLE I.E.P LETTER PLACED IN CHILD'S IEP. WE HAVE DOOR AND WINDOW ALARMS, PRINTED MATERIALS, STRATEGIES, SAFETY STRATEGIES, SOCIAL STORY, THESE THINGS. WE PROVIDED 7500 FAMILIES WITH THE BOXES SO FAR, THAT'S JUST A DROP IN THE BUCKET. THE COST IS $35 EACH. SO WE PUT ABOUT $260,000 INTO THIS AND ONLY HELPED 7500 FAMILIES. BUT IT IS HELP AND IT IS SOMETHING. WE DO GET EMAILS SAYING THE RESOURCES IN THERE HAVE LIKELY SAVED LIVES. WE CREATED TOOL KITS FOR CAREGIVERS AN FIRST RESPONDERS, AT AWARE.ORG WE CREATED IN 2010. WE PROVIDED $100,000 FOR LAW ENFORCEMENT FOR TRACKING EQUIPMENT SO KIDS CAN GET ON THAT PROGRAM. WE DID HELP WITH THAT IAN STUDY, WE FUNDED AND HELPD TO WRITE THE QUESTIONS FOR THAT STUDY SO THAT NOW WE DO HAVE THAT DATA PUBLISHEDDED IN PEDIATRICS. AND I DID REACH OUT TO THE DEPARTMENT OF JUSTICE AND MR. SLOWIKOWSKI, VERY HAPPY YOU'RE HERE WITH US TODAY. WE HAD A CONVERSATION ON AT LEAST A YEAR AND A HALF AGO THAT UNFORTUNATELY WE WERE NOT ABLE TO FOLLOW-UP, WE HOPED FOR A MEETING. DISCUSSION ABOUT ALERT SYSTEM SO GLAD TO SEE YOU HERE TODAY. LORI REACHD TO THE NATIONAL CENTER FOR MISSING EXPLOITED CHILDREN WHERE YOU MET BOB LOWERY WHO YOU WILL HEAR FROM LATER TODAY. THE CENTER HAS BEEN SUCH A WONDERFUL RESOURCE FOR US AND WE HAVE BEEN WORKING CLOSELY WITH THEM. THAT IS AVAILABLE ON OUR WEBSITE. WE ALSO REACHED TO THE YMCA HEADQUARTERS FOR A LIST AGO CROSS THE COUNTRY THAT PROVIDES SPECIAL NEEDS SWIMMING LESSONS. EVERY FAMILY NEEDS ACCESS TO WATER SAFETY PROGRAM BECAUSE SO MANY KIDS ARE DROWNING. WE PROVIDE FIRST RESPONDER SOCIAL WORKER PART TRAINING IN THE U.S. AND CANADA. RECENTLY WE JUST STARTED A PROGRAM GIVE US VOICE TO KEEP THEMSELVES SAFE BECAUSE THESE WANDERING ISSUES WOULD BE AVOIDED IF THE CHILD HAD A WAY TO COMMUNICATE. MOST CASES ARE NON-VERBAL INDIVIDUALS SO WE START A PROGRAM, WE'LL PROVIDE iPAD AND COMMUNICATION SOFTWARE FOR KIDS SO THEY CAN SAY HEY, I WANT TO GET FRENCH FRIES. INSTEAD OF BOLTING OUT OF THE HOUSE TO GO TRY TO GET THEIR FRENCH FRIES. THIS IS JUST A PICTURE OF A BIG SAFETY BOX. THEY ARE ASSEMBLED BY PEOPLE WITH AUTISM AND OTHER DEVELOP MENTAL DISABILITIES. THIS IS A NOTE SAYING THE ROAD IK TAG, THIS IS A LITTLE SHOE TAG ON HER CHILD'S SHOE FROM THE BOX, BROUGHT HOME SAFELY AFTER HE WANDERED. HE SLIPPED OUT AND A FEW MINUTES LATER THERE WAS A NEIGHBOR KNOCKING AT THE DOOR SAYING I JUST FOUND YOUR KID. AND I FOUND -- I BROUGHT HIM HOME BECAUSE I SEE THIS ID TAG THAT SAYS HE HAS H AUTISM AND YOUR PHONE NUMBER THAT HAVE ON THERE. SO SOMETHING SO SIMPLE LIKE AN ID TAG COULD VERY LITTLE RATTILY SAVE A CHILD'S LIFE. IT'S NOT THAT HARD TO GET PREVENTION RESOURCES OUT THERE. WE TELL FIRST RESPONDERS TO SEARCH WATER FIRST AND TREAT EACH CASE AS CRITICAL. OUR KIDS WILL DIE VERY,VERY QUICKLY ONCE THEY GET OUT THERE. THIS IS AN EXTRAORDINARY STUDY CASE STUDY THAT I WANT TO POINT OUT. SEARCHING WITH INDIVIDUALS WITH AUTISM DOES PRESENT UNIQUE CHALLENGES TO SEARCH AND RESCUE PERSONNEL. SO IN THIS PARTICULAR CASE, THIS BOY WAS NOT ANSWERING TO HIS NAME BUT HE DID ANSWER TO OZZY OSBOURNE MUSIC. THESE ARE ARE TWO HID LINES RECENTLY IN MASSACHUSETTS AND UTAH WHERE TWO INDIVIDUALS WITH AUTISM WERE LOCATED BY FIRST RESPONDERS WHO HAD HAD SPECIFIC TRAINING ON HOW TO SEARCH FOR INDIVIDUALS WITH AUTISM. TRAIN WORKS, WITH WE NEED THIS AND Ib0„ THE DEPARTMENT OF JUSTICE CONSIDER GETTING INVOLVED IN FIRST RESPONDER TRAINING. FINALLY WHAT WE NEED. OUR CHILDREN DO NOT QUALIFY FOR AMBER ALERT UNDER THE CURRENT CRITERIA. AN ABDUCTION HAS TO BE INVOLVED SO THERE NEEDS TO BE DISCUSSION ABOUT ALERT SYSTEM. SILVER AUREATES ARE ISSUED FOR OLDER ADULTS. WE NEED TO FIND -- WE REALLY NEED SOME DISCUSSION EITHER A ENDANGERED MISSING ALERT. AN AUTISM AMBER AALL RIGHT BUT LOVE THAT DISCUSSION TO BE OPENED UP TODAY. IT'S IMPORTANT. BENEFIT JOY FROM WISCONSIN, HE WAS ACTUALLY SEEN BY A NEIGHBOR SO SOME SORT OF ALERT SYSTEM MAY HAVE HELPED HIM. THE NEIGHBOR JUST DIDN'T REALIZE, THIS IS PART OF THE PROBLEM WITH WANDERING, OUR KIDS ARE SO GORGEOUS, LOOK AT HIM, HE'S SUCH A GORGEOUS KID YOU WOULD LOOK AND NOT THINK THERE'S ANYTHING WRONG WITH THIS CHILD. HE WAS 7 YEARS OLD, KIND OF OPT CUSP WHETHER OR NOT SAFE BEEN HIMSELF BUT A NEIGHBOR SAW AND MAYBE HE OOH WALKING TO A FRIENDS HOUSE AND DIDN'T STOP HIM AND NOW THIS NEIGHBOR CAN'T FORGIVE HIMSELF BUZZ IF HE HAD STOPPED HIM HE MAY NOT HAVE DROWNED. SAME WITH JACK. HE WAS IN A BUSY SHOPPING DISTRICT, SEEN BY MULTIPLE MEMBER OF THE PUBLIC, HAD AN ALERT DEVELOP OUT HE POSSIBLY COULD HAVE BEEN SAVED. OWEN BLACK IS A CHILD THAT DIED RECENTLY IN FLORIDA. HE WAS SEEN -- THERE WAS A GUY ON TV INTERVIEW I SAW HIM. I WAS WONDERING WHERE HIS MOTHER WAS. I HAD SEEN HIS MOTHER WITH HIM EARLIER AND DIDN'T KNOW WHY HE WAS ON THE BEACH BY HIMSELF. BUT DIDN'T LOOK LIKE THERE WAS ANYTHING WRONG WITH HIM AND HE FIGURED HE WAS OKAY ON HIS OWN. THIS STORY BROKE OUR HEARTS. WE WERE IN CONNECTICUT DOING -- NOT CONNECTICUT. WE WERE IN CANADA. FIRST RESPONDER TRAINING FOR POLICE OFFICERS, THE SEARCH WAS GOING ON THREE DAYS FOR MCKAYLA WHO WENT MISSING IN CALIFORNIA. WE GOT A TEXT MESSAGE IN THE MIDDLE OF OUR PRESENTATION THAT THEY FOUND HER BODY. SHE WAS FOUND -- ACTUALLY SEEN BY SOMEONE DRIVING A VEHICLE UP THE STREET. ANOTHER SITUATION WHERE AN ALERT MAY HAVE POSSIBLY HELPED. THIS IS CONNER MCELWANE, HE HAD MULTIPLE INCIDENTS FROM SCHOOL SETTINGS AND AT ONE POINT CONNER WAS PICKED UP BY A STRANGER IN A CAR. HE WASN'T SURE IF HE SHOULD PICK HIM UP BECAUSE AGAIN, HE MIGHT BE OKAY BUT IT WAS WEIRD THAT THE CHILD WAS OUT DURING SCHOOL HOURS, HE DECIDED TO GO AND PICK HIM UP AND PUT HIS IN HIS CAR AND CON NOR WASN'T ABLE TO RESPOND BECAUSE HE WAS NON-VERBAL AT THE TIME. SO -- THE SCHOOL HAD NOT CALLED THE POLICE. THIS GENTLEMAN WAS DRIVING AROUND TRYING TO FIND OUT WHERE CONNER BELONGED. THE GENTLEMAN GOT THE POLICE INVOLVED. THE POLICE WERE DRIVING AROUND TRYING TO FIND OUT WHERE HE BELONGED AND THE POLICE ACTUALLY WE FOUND OUT LATER WERE A LITTLE BIT MEAN TO CONNER BECAUSE THEY WERE ASKING HIM QUESTIONS THAT HE COULD NOT ANSWER BECAUSE HE WAS NON-VERBAL AND THEY DID NOT RECOGNIZE THE SIGNS OF AUTISM.Ht THEY THOUGHT HE WAS BEING UNCOOPERATIVE. SO EMPHASIZES THE NEEDS AMBER ALERT MAY HAVE HELPED. FIRST RESPONDER TRAINING WOULD HAVE HELPED WITH THE WAY HE WAS TRITREATED. GOT TO ESTABLISH FEDERAL GUIDELINES FOR SCHOOLS THAT MANDATE NOTIFICATION TO LAW ENFORCEMENT AND TO PARENTS IMMEDIATELY UPON WANDERING INCIDENCE THAT HAPPENED FROM SCHOOL. THIS IS A RECENT HEADLINE, CAN KID PULLED FROM WATER. WATER. WATER. THIS LITTLE BOY WAS PULLED FROM MUD UP TO HIS NECK. THEY GOT HIM JUST IN TIME AND PULLED HIM OUT. THIS BOY CASE STUDY RESCUED FROM LAKE MICHIGAN. A 12-YEAR-OLD LEFT SCHOOL AND ROAD A TRICYCLE THROUGH A BUSY ROAD RUSH HOUR FRIDAY. JUST LAST MONTH A PASSER BY HEARD SPLASHING, PULLED A FIVE-YEAR-OLD GIRL OUT OF A POND, SHE WAS NON-RESPONSIVE. THE GUY CALLED 911, THEY WERE ABLE TO WALK HIM THROW C FIRST QUARTERR AND HE WAS ABLE TO SAVE HER LIFE. SO MANY CLOSE CALLS WITH WATER. AND -- >> WENDY, WE HAVE TO ASK FOR YOU TO CLOSE YOUR COMMENTS. >> I'M GETTING THERE. THIS IS LAST SEEN SATURDAY, ONGOING CASE WE HOPE THAT THIS BOY WAS FOUND SAFELY, HOWEVER IT WAS IN CALIFORNIA IN THE DESERT. OVER 100-DEGREES AND THE CHILD HAS NOT BEEN SEEN SINCE SATURDAY. HUNDREDS OF PEOPLE ARE INVOLVED IN THE SEARCH. SINCE YOUR LAST MEETING HERE IN APRIL, NINE CHILDREN HAVE DIED JUST SINCE THE LAST IACC MEETING, NINE CHILDREN, THIS IS DREW HOW WELL, TWO YEARS OLD. LIVEIA NAVARREO THREE YEARS OLD. CHRISTOPHER, AGE 5. OWEN BLACK, AGE 7. MCKAYLA LYNCH, AGE 9. FRED DIWILLIAMS, AGE 14. DAVID WILLIAMS, AGE 15. DONOVAN MARTIN, AGE 16. AND (INDISCERNIBLE) FOUND DEAD IN YOUR BACKYARD IN D.C. YESTERDAY. SEVEN YEARS OLD. THESE ARE CHILDREN HAVE DIED JUST SINCE YOUR LAST MEETING. WE DON'T HAVE TIME TO WAIT ANY MORE WE NEED RESOURCES FOR FAMILIES, DOCTORS, FIRST RESPONDERS ALL PROFESSIONALS. WE NEED AXIS TO HOME SAFETY ITEMS WATER SAFETY PROGRAMS FOR FAMILIES. INSURANCE COVERAGE, FEDERAL FUNDING FOR TRACKING TECHNOLOGY FOR AT RISK INDIVIDUALS WITH AUTISM FOR AT RISK INDIVIDUALS WITH ALZHEIMER'S. WE NEED ACCESS TO AUGUST MENTIVE COMMUNICATION TECHNOLOGY FOR THOSE WHO ARE NON-VERBAL. WE NEED MEDICAL RESEARCH TO FINE WHAT IS CAUSING THE FIGHT OR FLIGHT REACTION, THE SLEEP DISORDERS, THE OBSESSIVE COMPULSIVE BEHAVIORS MAKING THEM WANDER AWAY. WE NEED TO TALK ABOUT THE AMBER ALERT SITUATION. I HOPE WE CAN GET SOMEWHERE WITH THAT TODAY. WE NEED EDUCATION AND TOOL KITS FOR CAREGIVERRERS TO UNDERSTAND AND AVOID WANDERING TRIGGERS. TRAINING FOR DOCTORS. ASK THEM TO USE THE ICD-9 CODE, RESOURCES FOR SCHOOLS AND SPECIFIC RESPONSE PROTOCOLS AND WE NEED TRAINING FOR SOCIAL WORKERS, FOR SCHOOL ADMINISTRATORS FIRST RESPONDERS AND REALLY LIKE TO PROPOSE TRAINING SUMMIT OR SERIES OF WEBINARS WITH MULTIPLE AGENCY INVOLVEMENT INCLUDING HHS, DEPARTMENT OF JUSTICE AND THE PRESIDENT OF EDUCATION. I'M GOING TO SLEEVE THAT SLIDE UP FOR YOU GUYS. THANK YOU, VERY MUCH FOR THE OPPORTUNITY TO COME AND SPEAK YOU AGAIN ABOUT WANDERING AND WE WILL HELP IN ANY WAY WE POSSIBLY CAN TO SAVE MORE CHILDREN'S LIVES. THANK YOU. [APPLAUSE] >> AS FOLKS SURMISED TOM HAD TO LEAVE. EVERYBODY IS WELL BUT HE -- THERE WERE TWO OLDER GRANDCHILDREN HE HAS SOME CHILD CARE RESPONSIBILITY FOR BECAUSE MOM BEING IN THE HOSPITAL, ET CETERA SO HE IS LEFT US DO WITHOUT THEM. WE WILL BRING THEM UP TO SPEED AFTERWARDS. ALISON WITH IACC RESPONSIBILITIES THUS FAR. >> IT WAS A PRESENTATION THAT SHE GAVE BACK IN OCTOBER OF 2010 THAT IMMEDIATELY LIT A FIRE UNDER THE IACC AND MADE ISRAELIZE TO RESPOND RIGHT AWAY BECAUSE CHILDREN WERE LITERALLY DYING IN FRONT OF OUR EYES. PRESENTED THEIR -- THE TRAGIC STORY OF THE FACT THAT SO MANY CHILDREN ARE= WANDERING, WE HAD ANECDOTAL DATA ONLY THEN BUT IT DIDN'T END WELL. IMMEDIATELY FORM AD SAFETY COMMITTEE TO INVESTIGATE LAUNDERING, IT'S BEEN MY PRIVILEGE AND HONOR TO WORK WITH LYNN AS CO-CHAIR OF THAT COMMITTEE IN THAT LETTER WE FOCUSED ON FIVE KEY ACTION ITEMS. THE FIRST WE KNEW WE NEEDED TO COLLECT DATA BECAUSE WE HAD ONLY ANECDOTAL INFORMATION, WE HAD NO HARD DATA. WE KNEW WE WANTD TO CREATE A MEDICAL CODE FOR AUTISM WANDERING FOR TWO REASONS. WE WANT TO TRACK PREVALENCE OF WANDERING AND WE WANT TO BE HAVE PEDIATRICIANS AND HEALTHCARE PROVIDERS INCLUDE DISCUSSIONS OF WANDERING IN THEIR ANTICIPATORY GUIDANCE TO FAMILIES AND MAKE THEM AWARE OF THE FACT THAT CHILDREN WITH AUTISM MIGHT WANDER. THIRD RECOMMENDATION WAS TO CREATE A ALERT SYSTEM TAILORED TO THE NEEDS OF INDIVIDUALS AND FOCUSED ON ON INDIVIDUALS WITH AUTISM UNDER AGE 18 AS WENDY STARTED TO MENTION, THERE WERE MEMBERS WHO EXPRESSED CONCERN ABOUT THISSING BEING INAPPROPRIATE FOR ADULTS WITH AUTISM WHO ARE INDEPENDENT. SO WE FOCUSED OUR ALERT ON CHILDREN UNDER 18 OR INDIVIDUALS UNDER THEIR PARENTS' GUARDIANSHIP. THE FOURTH WAS TO DEVELOP PROGRAMS TO PREVENT WANDERING INULOIDING PART TRAINING FIRST RESPONDER TRAINING AND TEACH EVERY TRAINING, AND FIFTH DEPARTMENT OF EDUCATION TO DEVELOP PRACTICES FOR PARENTAL NOTIFICATION. WHEN THERE WAS A SCHOOL BASED INCIDENT. THE SECRETARY RESPONDED. I AGREE THAT HEARTLY PARAGRAPH LETTER IN RESPONSE TO FIVE PAGE LETTER IS SOMEWHAT A DISAPPOINTMENT BUT SHE DID ENCOURAGE US TO MOVE FORWARD WITH FIVE ACTION ITEMS. THE SAME TIME WE WORKED ON THE LETTER TO THE SECRETARY THE COMMITTEE ALSO WORKED TOGETHER TO MOVE FORWARD THE WANDERING STUDY. AND SEVERAL AUTISM ORGANIZATIONS WERE TOGETHER TO FUND THE STUDY, THE AUTISM SCIENCE FOUNDATION, AUTISM SPEAKS, AUTISM RESEARCH INSTITUTE, NOBLE AUTISM COLLABORATION AN NATIONAL AUTISM ASSOCIATION. IT WAS ONE OF THE FEW TIMES, ALL THE ORGANIZATIONS MANY WHICH HAVE DIFFERENT GOALS AN FOCUS ON DIFFERENT AREAS OF NEED CAME TOGETHER. AND RECOGNIZE THIS WAS AN ISSUE THAT AFFECTED ALL OF OUR CHILDREN. WE EST ARTED DESIGNING THE SURVEY IN JANUARY, THREE MONTHS AFTER THE ISSUE CAME TO OUR ATTENTION. WE RELEASED THE SURVEY THIS MARCH OF 2011 AT THE KEN CAN DECREEINGER INSTITUTE, LARGE STUDY -- KENNEDY KREIGER INSTITUTE, INCLUDING PARENTS AND OVER A THOUSAND SIBLINGS. HERE IS WHAT THE DATA SHOW. AS WENDY SAID OUR CHILDREN ARE WANDERING FROM SCHOOL ENVIRONMENTS, CHILDREN ARE WANDERING FROM LARGE FAMILY FATHERINGS, THEY'RE WANDERING FROM THEIR OWN KITCHENS, WHILE EATING THEIR OATMEAL. THE INCIDENCE OF AUTISM WANDERING WAS 49%. 49% OF KIDS WITH AUTISM WANDERED THERE'S ONCE AFTER FOUR TIME IT IS RATE OF UNAFFECTED SIBLINGS. THE UNAFFECTED SIBLINGS ARE SHOWN IN RED AND CHILDREN WITH AUTISM ARE IN BLUE. I FOUND IT IRONIC THAT THE WANDERING DATA IS SHAPED LIKE A SHOE. BUT THAT WAS MY PAUL ASSURED ME JUST A COINCIDENCE. WE ALSO NOTEED FROM THE DATA THAT FROM AGE 8 TO 11, 27 PEST OF CHILDREN WITH AUTISM CONTINUED THE WANDER WHILE ONLY 1% OF UNAFFECTED SIBLINGS WANDERED AFTER AGE 8. ALSO IN OCTOBER OF 2011, WENDY MENTIONED, THAT WAS THE SECOND ACTION ITEM ON OUR LIST TO SECRETARY SEBELIUS AND I WANT TO THANK DR. COLLEEN BOYLE FOR SPEARHEADING THAT EFFORT. THE INTERNATIONAL CLASSIFICATION OF DISEASES IS A SYSTEM USED IN HEALTHCARE SETTINGS THROUGHOUT THE U.S., CLASSIFIES DISEASES, DISORDERS AND OTHER SYNDROMES. IT'S JOINTLY MAINTAINED BY CDC AND CMS. WE WERE ABLE TO CREATE CODE -- WANDERING AND DISEASE Z CLASSIFIED ELSEWHERE, THIS WENT IN AFFECT IN OCTOBER OF 2011. THE INTENTION WAS TO PROMOTE BETTER DATA COLLECTION BUT ALSO UNDERSTAND WANDERING AND ENABLE PEDIATRICIANS TO DISCUSS THE POTENTIAL FOR WANDERING. I WAS DISAPPOINTED TO HEAR FROM DR. PERRIN TODAY THAT THE ICD-9 CODE IS NOT IMPLEMENTED. AND I THINK THAT'S ANOTHER ACTION ITEM ON OUR LIST. NOW THAT WE HAVE THAT CODE, WE HAVE TO TAKE THE NEXT STEP AND TRY TO ENSURE THAT'S UTILIZED PROPERLY. MAY OF 2012 DATA FROM THE STUDY WERE PRESENTED AT THE MEETING FOR AUTISM RESEARCH. IN OCTOBER OF 2012 DATA PUBLISHED IN PEDIATRICS. ONE IMPORTANT STEP IN TERMS OF ACCOMPANYING PUBLICATION OF DATA AND PEDIATRICS, WE HAD A COORDINATED MEDIA OUTREACH. WE SAW THIS AS AN OPPORTUNITY TO CREATE AWARENESS OF POTENTIAL FOR WANDERING. ALL THE ORGANIZES WERE TOGETHER TO TRY TO MAXIMIZE MEDIA COVERAGE, AND GET COVERAGE ANOTHER WANDERING STUDY IN WIDE RANGE OF PUBLICATIONS INCLUDING THE THE NEW YORK TIMES, USA TODAY, U.S. NEWS AND WORLD REPORT, LORI DID A BEAUTIFUL STORY ON GOOD MORNING AMERICAN. -- GOOD MORNING AMERICA AND PART OF A HALF HOUR PROGRAM ON WABC, THE LOCAL NEWS STATION IN NEW YORK BECAUSE IT WAS A LONGER FORM PROGRAM WE WERE ABLE TO FOCUS NOT JUST ON THE STUDY ITSELF BUT THE ACTION STEPS THAT WE NEEDED TO TAKE IN ORDER TO PROTECT OUR CHILDREN. THAT WAS THE NAME OF THE SHOW -- NAME OF THE SHOW WAS PROTECT OUR CHILDREN. THE AAP CREATED THE FAMILY TRAINING DOCUMENT AS PART OF THE AUTISM TOOL KIT. I WANT TO POINT OUT THIS DOCUMENT IS BASED ON MATERIAL PUBLISHED BY THE NATIONAL AUTISM ASSOCIATION FROM THEIR WEBSITE AWARE AND ON DATA THAT WAS COLLECTED BY AUTISM ADVOCACY ORGANIZATION FUNDING COMES FROM PARENTS. I WAS DISAPPOINTED INTO TO FIND OUT THE AAP IS CHARGE DOCTORS FOR THIS INFORMATION SINCE IT WAS PROVIDED BY A ADVOCACY COMMUNITY. THAT'S SOMETHING THAT NEEDS TO CHANGE. I'M VERY EXCITED THERE'S A REPRESENTATIVE FROM THE DEPARTMENT OF JUSTICE BECAUSE AS I SAID, THE THIRD ACTION ITEM ON OUR LIST TO THE SECRETARY WAS TO FOCUS ON CREATING ALERT SPECIFICALLY TAILORED TO INDIVIDUALS WITH AUTISM WHO WANDER OR ELOPE SO AT THIS POINT I'M GOING TO HAND THE FLOOR OVER TO JEFF SLOWIKOWSKI FROM OFFICE OF JUVENILE JUSTICE AND DELINQUENCY PREVENTION. AND I LOOK FORWARD THE MAKING PROGRESS ON THIS IMPORTANT TOPIC TODAY. >> THANK YOU. I THINK WHAT WE'RE GOING TO DO, WE, BOB AND MYSELF IS WE DO WANT TO HAVE A GOOD DISCUSSION ABOUT MISSING CHILDREN AND HOW THE DEPARTMENT OF JUSTICE HANDLES THAT. WE HAVE BEEN PARTNERED WITH THE NATIONAL CENTER FOR 30 PLUS YEARS IMPLEMENTING DIFFERENT PROGRAMS INCLUDING THE AMBER ALERT PROGRAM WHICH IS THE MOST NOTABLE. SO BOB WILL WALK THROUGH A QUICK PRESENTATION OF ALL THE DIFFERENT THINGS WE DO INCLUDING HOW AMBER IS PART OF THAT, THEN WE SHOULD HAVE AMPLE TIME TO DISCUSS WHAT WE AT THE DEPARTMENT OF JUSTICE CAN DO AND HOW WE ARE WORKING WITH ALL TYPES OF MISSING CHILDREN. >> THANK YOU, JEFF. MY NAME IS BOB LOWERY, EXECUTIVE DIRECTOR OF THE MISSING CHILDREN DIVISION FROM THE NATIONAL CENTER. WE HAVE BEEN AROUND 29 YEARS AND JUST BRIEFLY WE PROVIDE SUPPORT TO LAW ENFORCEMENT FIRST RESPONDERS, FAMILY AND CAREGIVERS WITH MISSING CHILDREN AND HELPING LOCATE AND RETURN THEM TO SAVE ENVIRONMENTS. IN CASES OF EXPLOITATION PROTECTING CHILDREN. THE PAST COUPLEFUL O YEARS MISSING CHILDREN DIVISION WE NOTICED INCREASES IN REPORTS OF CHILDREN MISSING WITH SPECIAL NEEDS. AS A RESULT WE HAVE ALSO SEEN ABNORMALLY HIGH MORTALITITY RATES ASSOCIATED WITH MISSING EPISODES THAT CONCERNED US AND WE TOOK A CLOSER LOOK. AT THE NATIONAL CENTER WE RECEIVE REPORTS OF MISSING CHILDREN EACH DAY IN OUR CALL CENTER. WE HAD METROPOLITAN POLICE DEPARTMENT YESTERDAY ON THE TRAGEDY INVOLVING MICHAEL KINGSBURY. WE HAVE RESOURCES AS WELL IN CALIFORNIA RIGHT NOW, WE HAVE TEAMS ON THE GROUND TRYING TO FIND TERRY SMITH. SO WE DO GET A NUMBER OF CHILDREN WITH SPECIAL NEEDS, WASN'T ALWAYS AUTISM, WE SAW CASES OF CHILDREN WITH DOWN'S SYNDROME BUT WE DIDN'T SEE THE MORTALITY RATES AS WITH AUTISM THAT CONCERNED US. WE ALSO IDENTIFY CHALLENGES THAT FIRST RESPONDERS HAVE TO DEAL WITH WHEN IT COMES TO CHILDREN WITH SPECIAL NEEDS THAT GO MISSING, BEHAVIORS ARE MUCH DIFFERENT THAN UNAFFECTED CHILD. I SPEND 30 YEARS IN LAW ENFORCEMENT BEFORE I JOIND THE NATIONAL CENTER, I HAVE BEEN INVOLVED ON THE GROUND IN A LOT OF INVESTIGATIONS MYSELF. THERE IS A LARGE MISUNDERSTANDING ESPECIALLY LAW ENFORCEMENT COMMUNITY ABOUT ISSUE OF AUTISM. WE TALKED ABOUT WANDERING IN SAFE ENVIRONMENTS. WE DON'T SEE THAT UNAFFECTED CHILDREN. THE TENDENCY TO FIND THEMSELVES IN CLOSED SPACES CAN BE OVERLOOKED EASILY BY SEARCH TEAMS IN THE FIELD. ONE THEORY OF YESTERDAY'S TRAGEDY WAS THE FACT THAT POSSIBLY MICHAEL HIMSELF GOT INTO THAT VEHICLE THOUGH TOO EARLY TO TELL, I THINK THAT'S STILL AN INVESTIGATION GOING ON BUT THAT IS NOT AN UNUSUAL TRAIT SEEN IN THE THAT CHILDREN WILL DO THAT LIKELY HIDE FROM THE TEAMS. WHAT APPEARS A DIMINISHED SENSE OF FEAR. THESE CHILDREN WANDER THROUGH VERY DANGEROUS TERRAINS, THROUGH THE DARKNESS, WHAT DOESN'T SEEM TO HAVE THE SAME LEVEL OF FEAR WE SEE WITH OTHER CHILDREN. AS WENDY SAID, WHEN WE TALKED TO FIRST RESPONDERS, THESE CHILDREN MAY IN THE BE ABLE TO RESPOND TO THEIR NAME BEING CALLED WHICH IS A SEARCH TECHNIQUE USED BY LAW ENFORCEMENT TO CALL OUT THE CHILD' NAME AND HOPE THEY RESPOND. MANY CHILDREN ARE UNABLE TO DO THAT. AN INTERESTING BEHAVIOR, NOT NECESSARILY BEHAVIOR BUT FACT IS THESE CHILDREN CAN BE VERY RESILIENT. WE ENCOURAGE LAW ENFORCEMENT WHEN LOOKING FOR A CHILD WITH SPECIAL NEEDS NOT GIVE UP SEARCHES TOO EARLY, AS WE HAVE SEEN WITH THE KISS OF TERRY SMITH, OUR FOLKS ARE ON THE GROUND URGING LAW ENFORCEMENT TO CONTINUE THAT SEARCH, DON'T ASSUME THE WORST HAS HAPPENED SO WE'LL KNOW FOR SURE. I'LL SHARE INFORMATION ABOUT THAT IN A SECOND. UNIQUE BEHAVIORS OFFER A CHALLENGE FOR LAW ENFORCEMENT NO TWO CHILDREN ARE ALIKE. SEARCH AND RESCUE COMMUNITY SAYING IF YOU SEARCH FOR ONE CHILD WITH AUTISM I DON'T RECOLLECT YOU CERTAIN FOR ONE CHILD WITH AUTISM. EACH SEARCH CRITERIAS HAD BEEN DIFFERENT. WE ALSO KNOW THE DIMINISHD SENSE OF FEAR ISSUE BECOMES VERY CONCERNING TO US BECAUSE THE CHILDREN ARE OFTEN ATTRACTED TO ACTIVE ROADWAYS, THEY LOOK FOR ROAD SIGNS ON HIGHWAYS, TRAINS, ACTIVE TRAIN TRACKS, FIRE TRUCKS AND THE ONE WE SEE MOST OFTEN IS THEY'RE ATTRACTED ALMOST IMMEDIATELY TO BODIES OF WATER. WE ALSO SOME OF THE CHILDREN ESPECIALLY THE HIGHER FUNCTIONING CHILDREN, ASBURGERS WE SEE THEM TRAVEL MUCH FURTHER DISTANCE THAN NON-EFFECTED CHILD. JUST IN APRIL THIS YEAR, 16-YEAR-OLD ANGELA FROM GEORGIA, WE FOUND HIM 14-MILES AWAY FROM WHERE HE WAS LAST SEEN ON FOOT. WE KNOW DURING HIS MISSING EPISODE OF OVER TWO DAYS HE PROBABLY TRAVELED NEARLY TWICE THAT DISTANCE BECAUSE HE WAS ZIGZAGGING AND WAS SPOTTED DIFFERENCE AREAS WHILE HE WAS GONE. LAST YEAR, IN JUNE, A 15-YEAR-OLD CHILD FROM CHICAGO TRAVELED BY FOOT 25-MILES. THE REASON I POINT THAT OUT IS WHEN WE SET UP SEARCH PARAMETERS FOR MISSING CHILDREN THESE PARAMETERS DON'T HARDLY EVER EXCEED THOSE DISTANCES, IN FACT THEY'RE SMALLER SO WE URGE LAW ENFORCEMENT TO WIDEN SEARCH PERIMETERS LOOKING FOR THESE CHILDREN. SEARCH TEAMS MUST CONSIDER INNOVATIVE WAYS TO SEARCH FOR THESE KIDS. WENDY STOLE MY WIND ON CHILD FROM CALIFORNIA BUT IT IS A TECHNIQUE THAT WE WERE IMPRESSED FOUND OUT THE CHILD HAS AN INTEREST IN OZDY OSBOURNE MUSIC, ALAN JACKSON AND STARTED PLAYING THE MUSIC ON LOUD SPEAKERS SO THE CHILD CAME OUT ACTUALLY MET THE SEARCHERS. WE ALSO ENCOURAGE LAW ENFORCEMENT USE RECORDINGS OF A CAREGIVER A CHILD MAY RESPOND TO. WE HAVE BEEN NOBODY TO TO BRING OUT CHILD' BEDDING. MAYBE LAY OUT A FAVORITE TOY. GLOW GLOW STICKS IN THE WOODS AT NIGHT TO HELP TRACK THE CHILD. IF WE THINK THE CHILD IS INTERESTED IN FIRE APPARATUS WE ASK THEM TO BRING FIRE TRUCKS DOWN AND MAY EVEN ALERT SIRENS ON THE APPARATUS AND SEE IF IT WILL BRING THE CHILD OUT OR IF THE CHILD HAS INTEREST IN HELICOPTERS, THEY DON'T ALWAYS WORK SOME OF THESE SEARCHES BECAUSE EVIDENTIAL TERRAIN BUT WE'LL FLY OVER THOSE DENSE AREAS ASK THE HELL COPPER TO LAND NEARBY AND SEE IF THE CHILD MAYBE INTERESTED IN COMING OUT TO TAKE A LOOK. MORTALITY RATES INVOLVING THE CHILDREN, THE NATIONAL AUTISM ASSOCIATION RECORD SHOW 91%. WE DON'T COLLECT THIS DATA AT THE NATIONAL CENTER THOUGH WE WORK CASES AND WILL TELL YOU ANECDOTALLY WE DON'T DISAGREE WITH THAT FIGURE WHEN IT COMES TO DROWNING OF THESE CHILDREN. I WANT TO SPECIFY THOUGH NOT EVERY CHILD WITH SPECIAL NEEDS THAT GOES MISSING DIES. WE DO SEE ABNORMALLY HIGH RATES OF MORTALITY. OTHERS ARE STRUCK BY VEHICLES. AND POSSIBLY LIKE WHAT HAPPENED YESTERDAY WAS EXPOSURE TO THE ELEMENTS OR HEAT RELATED DEATH THAT MICHAEL MAY HAVE ENDURED WHILE HE WAS GONE. BUT THESE KIDS SEEM WHEN THEY DO GO MISSING THEY HEAD STRAIGHT FOR THOSE WATER HAZARDS FOR REASON THAT WE ONLY HAVE THEORY. WE DON'T REALLY KNOW. TO ADDRESS THIS, I WANT TO SHARE RESOURCES AVAILABLE WITH THE NATIONAL CENTER DOING TO HELP LAW ENFORCEMENT WITH THIS ISSUE AND FAMILIES. WE BROUGHT IN A SMEs LAST YEAR, TO DISCUSS THE PROBLEM, DISCUSS POSSIBLE SOLUTIONS. WE BROUGHT WENDY LORI TO HELP US UNDERSTAND THE ISSUE OF AUTISM. FROM–t THE NATIONALLY RECOGNIZED SEARCH AND RESCUE EXPERT UNDER CONTRACT WITH THE NATIONAL CENTER MR. KESNER. HE HAS WRITTEN A BOOK ON LOST PERSON BEHAVIOR, EGG PERT ON SEARCH AND RESCUE. WE HAVE TEAM EXPERTS ON STAFF IN OUR EMPLOY. WE HAVE BEST SEARCH PEOPLE IN THE BUSINESS THAT ACTUALLY WORK FOR THE NATIONAL CENTER AND WE DISPATCH OUT WHEN A CHILD IS MISSING AND WE BROUGHT THEM IN AS WELL. CALL CENTER STAFF AND OUTREACH TEAMS TO DISCUSS THIS PROBLEM AND DISCUSS PROTENNIAL SOLUTIONS. WHAT WE CAME UP WITH IS THAT WE RECOMMEND NOW TO LAW ENFORCEMENT THAT ANY CASE OF MISSING CHILD WITH SPECIAL NEEDS REGARDLESS OF CONDITION OF DIAGNOSIS SHOULD BE TREATED CRITICALLY AND SHOULD ALSO HAVE ELEVATED RESPONSE BY THAT AGENCY WHICH MEANS MAN POWER RESOURCES USE OF VOLUNTEERS. WHAT WE ALSO KNOW IS THE ACTIONS OF THOSE FIRST RESPONDERS ARE ARE CRITICAL TO FINDING THE CHILD AND SAFELY RETURNING THEM TO THE SAFE ENVIRONMENT SO WHEN THEY ARRIVE ON SCENE WHAT THEY DO ALMOST IMMEDIATELY MEANS LIFE OR DEATH OF THE CHILD. WE TOOK THAT A STEP FURTHER TELLING 911 DISPATCH CENTERS VINIAGRETTE GET CALL FOR CHILD WITH AUTISM TO TELL THE CALLER TO STAY AT THAT RESIDENCE BUT ALERT THEIR NEIGHBORS THEIR FAMILIES, WE DON'T HAVE TIME THE WAIT FOR FIRST RESPONDERS BECAUSE LADIES AND GENTLEMEN, I HAVE TO TELL YOU MOST OF THE DUST WE HAVE O -- DEATHS WE HAVE SEEN INVOLVING CHILDREN THE TRAGEDIES ARE PROBABLY OVER WITH BEFORE THE OFFICERS CAN EVEN ARRIVE SO WE DON'T HAVE TIME THE WAIT. SO IF WE CAN HAVE NEIGHBORS FAMILY FRIENDS TO WAIT FOR OFFICER ARRIVE TO LET THEM KNOW WHAT'S GOING ON BUT GET DOWN QUICKLY, HEAD THE KIDS OFF AND WE TRY TO CONTAIN THOSE CHILDREN IN A DEFINED AREA TO HELP THE SEARCH TEAMS GET TO RESPONSE QUICKLY. FROM MY EXPERIENCE AS LAW ENFORCEMENT OFFICER, WHEN WE RECEIVE A CHILD MISSING REPORT WE GET A DESCRIPTION OF THE CHILD, ASK WHERE THE CHILD WAS LAST SEEN AND HEAD THAT DIRECTION IN SEARCH OF THAT CHILD. WE ARE NOW FINDING OUT THAT SEARCH CRITERIA AND THAT RESPONSE IS INADEQUATE WHEN IT COMES TO LOOKING FOR CHILD WITH SPECIAL NEEDS. WE URGE LAW ENFORCEMENT TO SIT AND LISTEN INTENTLY TO PARENTS WE NEED THEM QUICKLY AND ACCURATELY DETERMINE RISK FACTORS TO THAT CHILD AND THEY CAN ONLY DETERMINE THAT BY TALKING TO THAT CAREGIVER OR PARENT WHO KNOWS THAT CHILD THE BEST. WHAT INTERESTS THAT CHILD. WHERE THEY MAY BE HEADING. IF THEY'RE INTERESTED IN HEAVY EQUIPMENT, ROADWAYS, WATER, WE NEED TO KNOW THAT RIGHT A WAY. HAS THAT CHILD GONE MISSING BEFORE BECAUSE OF REPETITIVE NATURE OF OF SOME OF THE CHILDREN THEY WILL LIKELY RETURN TO PLACES THEY SEEM TO LIKE. AND WE NEED TO SEND SOMEBODY OUT THERE QUICKLY. WE ALSO WANT TO BE CAREFUL SETTING SEARCH CRITERIA THAT WE WANT TO KNOW FROM THAT CAREGIVER HOW THAT CHILD MAY LIKELY REACT TO SEARCHERS. WILL THEY RUN, HIDE, BE FEARFUL OF THAT SEARCH TEAM. ARE THEY ABLE TO RESPOND IF NAME IS CALLED. WHAT DO THEY DO WHEN WE PUT OUT SEARCH DOG? DOES THAT FRIGHTEN THAT CHILD? AND WHAT WE'RE CONCERNED ABOUT IN CASES LIKE WE SAW IN VIRGINIA, HAHNOVER COUNTY, WE CAN STEER OR CHASE THE CHILD IN A MORE DANGEROUS SITUATION SO WE HAVE TO BE CAREFUL AND MINDFUL OF BEHAVIORS WHAT REACTIONS WE GET FROM THE CHILDREN. SO LAW ENFORCEMENT HAS THEIR HANDS FULL. WHEN THINKING OF THOSE THINGS SO WE DON'T INADVERSE AT THE PRESENT TIMELY RUN THE CHILD IN A MORE DANGEROUS SITUATION. DO THEY NEED LIFE SUSTAINING MEDICATIONS AND WE NEED TO KNOW THAT QUICKLY. THE DEVELOPMENT OF A SEARCH PLAN, WE RECOMMEND A LAW ENFORCEMENT TO USE THE INCIDENT COMMAND SYSTEM A SINGLE POINT OF CONTACT OF SOMEONE IN CHARGE. WE WANT A AGGRESSIVE AND VERY WELL COORDINATED SEARCH IN HAHNOVER COUNTY SEARCH TEAMS, GREETED WITH 6,000 VOLUNTEERS THAT SHOWED UP TO ASSIST IN THE SEARCH FOR THAT CHILD. WITHOUT UTILIZATION OF INCIDENT COMMAND SYSTEM AND ORGANIZE THAT, THAT IS QUICKLY CHAOTIC, ALSO HAVE -- BE MISSING CRITICAL EVIDENCE AND MISSING OPPORTUNITIES TO FIND THAT CHILD. SO WE RECOMMEND TO LAW ENFORCEMENT AND TO SET UP THE SYSTEM, MAKE SURE SEARCHERS ARE TRAINED, VOLUNTEERS ARE ORGANIZED AND THEY GO OUT WITH SOMEONE TRAIN SO WE MAKE BEST USE OF ALL POSSIBLE RESOURCES THAT ARE AVAILABLE. WE DON'T GIVE UP UNTIL THAT CHILD IS FOUND. THIS IS 8-YEAR-OLD ROBBIE WOOD FROM HAHNOVER, VIRGI THIS CHILD SURVIVED SICK DAYS IN SOME RUGGED TERRAIN IN HAHNOVER, VIRGINIA. I WILL TELL YOU BY THREE DAYS INTO THAT SEARCH SOME PROFESSIONALS FROM THE COUNTY CAME AND URGED THE THE SHERIFF TO SHIFT FROM A SEARCH CRITERIA TO A BODY RECOVERY. FORTUNATELY THE SHERIFF WAS CONVINCED TO CONTINUE THAT SEARCH AND ROBBIE WAS FOUND. THE THING REMARKABLE ABOUT ROBBIE WOOD, THIS CHILD LASTED SIX DAYS. NO SITINGS OF HIM IN THAT SEARCH PERIMETER. 6,000 PEOPLE LOOKING FOR HIM, THERE WAS NO SITINGS FROM THE HELP CONTINUER, HE WAS ABLE TO ALLUDE EVERYONE, HE WAS BAROING DOWN, THERE WAS EVIDENCE HE WAS ACTUALLY SHELLERRING HIMSELF, HE FOUND NOURISHMENT FROM PLACES WE DON KNOW BECAUSE ROBBIE IS NON-VERBAL. HE WAS GETTING WATER. SO WE LEARNED A LOT FROM WHAT HAPPENED WITH WITH ROBBIE. THE ONLY REASON I HAVE TO TELL YOU ROBBIE WAS FOUND, HE WAS OUTSIDE THE SEARCH PERIMETER, WAS BECAUSE HE FINALLY COLLAPSED FROM EXHAUSTION. AND THE CHILD WAS ACTUALLY ACCORDING TO MEDICAL PROFESSIONALS WAS DYING, IF HE HAD NOT BEEN FOUND BY AEER JUST OUTSIDE THAT PERIMETER, WE MAYBE TELLING A MORE TRAGIC STORY. >> WE TALKED -- WE'RE HERE TO TALK AMBER ALERT BUT I THOUGHT IT BEST, MR. SLOWIKOWSKI AND I DISCUSSED THIS TO SHARE WITH YOU WHAT RESOURCES ARE AVAILABLE, NOT ONLY NATIONAL CENTER BUT AVAILABLE RESOURCES WHEN A CHILD WITH SPECIAL NEEDS GOES MISSING. WE OPERATE A 24 HOUR 7 DAY A WEEK CALL CENTER, TAKE CASES FROM FAMILY MEMBERS, PARENTS, LAW ENFORCEMENT, WE WATCH CRITICALLY MISSING CHILD REPORTS COME OVER THE NEWSWIRES AND WE INTACKETS IN ASSIGNED P PERSONNEL NO MATTER THE TIME OF DAY TO START WORKING PROVIDING RESOURCES. ONE OF THOSE RESOURCES IS TEAM ADAM. NAMED AFTER ADAM WALSH, THE SON OF ONE OF OUR FOUNDERS. TEAM ADAM DEPLOYS TRAINED EXPERIENCED FORMER LAW ENFORCEMENT OFFICERS, WE DISPATCHED THEM TO THE SCENE OF A MISSING CHILD INS DENT I'LL GIVE YOU QUICK STATISTICS BUT SINCE 2011 OUR TEAM ADAM HAS DEPLOYED 26 CASES WE GOT ON THE GROUND 26 TIMES FOR CHILDREN WITH AUTISM. NINE ADDITIONAL TIMES WE TEAMS ON THE WAY AND THEY WERE RECALLED. THIS MAY SEE SEEM LOW TO YOU BUT UPON YOU BACK TO MANY TIMES INVOLVED IN SPECIAL NEEDS CHILD HAPPENED BEFORE FIRST RESPONDERS COULDN'T GET THERE. OUR TEAM WAS THERE WITHIN TWO HOURS. OF 26 DEPLOYMENTS 8 OF THOSE DEPLOYMENTS THE CHILDREN WERE VICTIMS OF DROWNING. NO OTHER -- THE REST OF THE CHILDREN WERE FOUND SAFELY RETURNED TO THEIR PARENTS CH ONE CHILD FOUND WAS SITTING ON A CLIFF OVER LOOKING A RIVER CONCH TEMPLATING WHAT WE THINK WAS GETTING TO THAT WATER WHEN HE WAS DISCOVERED. I BROUGHT WITH ME TODAY, I HAD THE -- GRACIOUSLY PASSED OUT BEST PRACTICES GUIDE THAT WE DEVELOPED AT THE NATIONAL CENTER WHICH IS 'ALLY AN ADDENDUM TO THE LAW ENFORCEMENT RESPONSE GUYS NATIONAL CENTER DISTRICTS TO LAW ENFORCEMENT. THIS IS WHAT WE CONSIDER BEST PRACTICES WHEN IT COMES TO SEARCHING FOR A CHILD WITH SPECIAL NEEDS. IT IS INCLUDED, ALL OF OUR TRAINING AT THE NATIONAL CENTER. BECAUSE WE BELIEVE AWARENESS AN EDUCATION OF FIRST RESPONDERS IS THE KEY TO SAVING LIVES OF CHILDREN. I AGREE WITH WENDY, THIS IS AN ISSUE IF WE CAN GET OUR ARMS AROUND IT WE'LL SAVE LIVES. THE EDUCATION PIECE IS PROBABLY MOST IMPORTANT. FIRSTHAND EXPERIENCE, THERE'S A LARGE MISUNDERSTANDING WITH LAW ENFORCEMENT FIRST RESPONDER COMMUNITY ABOUT BEHAVIORS OF CHILDREN MISSING WITH SPECIAL NEEDS. WE HAVE ALSO SEEN IT WITH CAREGIVERS AN TEACHERS THAT DON'T UNDERSTAND IT WHEN THEY'RE CARING FOR CHILDREN WITH SPECIAL NEEDS AND ESPECIALLY AUTISM. I WAS SURPRISED LEARN HOW MANY WERE UNAWARE OF WANDERING AND ELOPEMENT ISSUE WHEN WE SPOKE TO THEM ABOUT IT. SO AWARENESS AND EDUCATION IS RYE TALLY IMPORTANT THAT WE CAN LET THE PUBLIC KNOW SO THAT THEY -- WE CAN SAVE LIVES. THE ROLE OF CALL TAKERS AT THE 911 CENTERS, WE TRAIN 911 CALL TAKERS AT THE NATIONAL CENTER WHAT TO DO WHEN THEY RECEIVE REPORTS OF MISSING CHILDREN. WE HAVE ADDED THAT TO OUR TRAINING OF CHILDREN WITH SPECIAL NEEDS. AND WE ALSO -- THIS IS WHERE WE ALSO TRAINED THE 911 DISPATCHERS SO CALLERS TO PLEASE GET WHOEVER YOU CAN OUT TO THE BODIES OF WATER TO HEAD THE KIDS OFF. WE KNOW WE NEED TO FOCUS ON PREVENTION, PARTS, CAREGIVERS, EDUCATORS AND EVERYONE ELSE WE CAN GET SO WE CAN MAKE THEM AWARE OF POTENTIAL DANGERS. WE DID HAVE CONSULTATION I CAN TELL YOU AT THE NATIONAL SEPTEMBER WE DO NOT EPIDOSE PRODUCTS NOR DO WE ASSOCIATE OURSELVES WITH THE NAMES OF THESE. BUT IN OUR EXPERIENCE AT THE NATIONAL CENTER TRACKING DEVICES DO SAVE LIVES OF THESE CHILDREN. AS I SAID YESTERDAY, JUST YESTERDAY I BELIEVE A TRACKING DEVICE ON MICHAEL WOULD HAVE FOUND HIM WITHIN MINUTES AS OPPOSED TO HOURS, MAYBE A COUPLE OF DAYS AND MAY WELL HAVE SAVED THAT CHILD'S LIFE. SO WE DO BELIEVE THIS IS A VIABLE OPTION THAT SHOULD BE CONSIDERED BUT SHOULD BE UP TO LOCAL JURISDICTIONS. WE ALSO AT THE NATIONAL CENTER BASED ON THAT BEST PRACTICES CRITERIA DEVELOPED TRAINING PACKAGES WE SENT OUT TO ALL OF OUR TEAMS. SO FAR WE TRAINED OVER A THOUSAND LAW ENFORCEMENT OFFICERS AND FIRST RESPONDERS ON SPECIAL NEEDS MISSING CHILDREN. OUR LAW ENFORCEMENT OUTREACH TEAMS WITH LONG TERM MISSING CHILDREN, WE GIVE THE TRAINING PACKAGE AND THEY ARE DELIVERING THAT REGIONALLY IN THEIR HOME BASIS. WE HAVE REPRESENTATION IN 48 OF 50 STATES, AND EACH STATE PROVIDING TRAINING TO LAW ENFORCEMENT. WE ALSO HAVE PUBLISHED ARTICLES IN PROFESSIONAL PUBLICATIONS, MOST RECENTLY THE FBI NATIONAL ACADEMY MAGAZINE, IN THE DECEMBER ISSUE RAN ON THE COVER, THE WORK THAT WE'RE DOING WITH FINDING CHILDREN WITH SPECIAL NEEDS SO WE ARE GETTING THE MESSAGE OUT TO LAW ENFORCEMENT AND I THINK WE'RE LOOK AT PARTNERSHIP WITH INTERNATIONAL ASSOCIATION CHIEF OF POLICE AND NATIONAL SHERIFF'S ASSOCIATION. WE ALSO TRAINED STATE MISSING CHILD CLEARINGHOUSES, EACH STATE CLEARINGHOUSE, EACH GIVE INFORMATION AND TRAINING WHEN IT COMES TO CHILDREN WITH AUTISM. JUST IN THE LAST COUPLE OF WEEKS WE HAD A MEETING WITH THE INTERNATIONAL ASSOCIATION OF FIRE CHIEF, WE HAVE BEEN ENGAGING THEM TO TRAIN FIRE PERSONNEL ASSISTING SEARCH FOR THESE CHILDREN WHAT THEY CO. MORE RECENTLY WE WERE PLEASED TO FIND OUT THE NATIONAL SEARCH AND RESCUE COMMITTEE, THE GOVERNING BODY FOR THE NATIONAL SEARCH PROFESSIONALS TO INCLUDE PROTOCOLS AT THE PROTOCOL CENTER AND THE DEPARTMENT OF DEFENSE HOMELAND SECURITY DEPARTMENT OF INTERIOR DEPARTMENT OF CORRECTIONS TRANSPORTATION, GFCC AND NASA. AND I'LL PASS THE INFORMATION WHEN IT COMES TO SPECIAL NEEDS CHILDREN. ONE THING WE FOUND TO BE EXTREMELY USEFUL AS A TOOL WHEN WE HAVE A CHILD WITH SPECIAL NEEDS, AS WE SAID TIME IS THE ENEMY IS WE USE ONE OF OUR PARTNER ORGANIZATION A CHILD IS MISSING. ESSENTIALLY WITHOUT ESSENTIALLY REVERSE 911 SYSTEM WE CAN TARGET AN AREA BASED ON ZIP CODE WE WALK THROUGH LAW ENFORCEMENT ACCESSING THAT SYSTEM AND PUTTING OUT A MESSAGE EACH OF THE HOMES IN THAT VICINITY TO ALERT THEM WE'RE LOOKING FORkwj THE WILD AND PLEASE CHECK RESIDENCES OR PLEASE COME OUT AND HELP. SO THAT'SK TREATMENTLY HELPFUL TO US IN FINING THESE CHILDREN. AMBER ALERT, THERE ARE INFORMATION ABOUT AMBER ALERT, CERTAIN CRITERIA THAT IS REQUIRED BUT AMBER ALERT WAS SOMETHING THAT CAME ABOUT AS A RESULT OF A TRAGEDY AS MOVE PROGRAMS DO. THIS IS AMBER HAGERMAN MISSING IN TEXAS BACK JANUARY 13th, 1996, SHE WAS KIDNAPPED, TAKEN OFF HER BICYCLE BY AN OFFENDER AND NOT LONG AFTERWARDS SHE WAS FOUND MURDERED AS A RESULT OF THAT AMBER ALERT PROGRAM CAME UP, TO RESPOND TO ENGAGE BROADCASTERS OTHER COMMUNITY RESOURCES TO IMMEDIATELY NOTIFY THE PUBLIC WHEN A CHILD ABDUCTION HAS OCCURRED IT'S A VOLUNTARY PARTNERSHIP, IT WAS BASED ON THE THEORY OR AT LEAST RESEARCH WE GOT FROM THE WASHINGTON STATE STUDY THAT TELLS US THAT ABDUCTED CHILD WERE TO BE KILLED, IT WAS DONE WITHIN THE FIRST THREE HOURS SO WE KNEW THE TIME IS THE ENEMY AND WE HAVE TO MOVE QUICKLY SO AMBER ALERT WAS ABLE TO DO THAT AND IT'S DONE THAT HIGHLY SUCCESSFULLY SINCE 2003. THE CRITERIA THAT EXISTS RIGHT NOW FOR AMBER ALERT, IS THERE HAS TO BE A REASONABLE BELIEF THAT A CHILD ABDUCTION OCCURRED. THE AGENCY HAS TO BELIEVE THAT A CHILD IS IN EMINENT DANGER, SERIOUS BODILY INJURY OR DEATH AND THERE'S SUFFICIENT DESCRIPTIVE INFORMATION ABOUT THE VICTIM IN THE ABDUCTOR FOR LAW ENFORCEMENT THAT ISSUED THE AMBER ALERT TO ENGAGE THE PUBLIC FOR THE QUICK LOCATION AND RECOVERY OF THAT CHILD. THAT'S -- THOSE ARE ONLY THREE CRITERIA REQUIRED FOR AMBER BUT IT'S WHY IT MAKE IT IS SYSTEM THE SUCCESS IT IS TODAY. IS THERE ENOUGH INFORMATION ABOUT THAT CRIME TO ASSIST IN RECOVERY. AND I WILL TELL YOU THAT I THINK AMBER IS NOW BEEN RESPONSIBLE FOR RECOVERY OF OVER 6 HUP ABDUCTED CHILDREN PROBABLY THE MOST AT RISK SINCE THAT SYSTEM WEPT IN SO WE'RE PROUD OF THE ACCOMPLISHMENTS THERE. ALSO A MISNOMER OUR MISUNDERSTANDING ABOUT THE AMBER ALERT PROGRAM IS NOT CENTRALLY RUN BY THE DEPARTMENT OF JUSTICE HERE IN WASHINGTON D.C., IT'S A REGIONAL PROGRAM MONITORED AND RAN BY THE STATE WHO MANAGE THE SYSTEM GLOBALLY. AND THERE'S A REASON FOR THAT, IT REQUIRES LOCAL RESOURCES TO MAKE THAT SYSTEM USEFUL AND SUCCESSFUL. SO EACH REGION IN THE UNITED STATES SOME STATES HAVE MORE THAN ONE AMBER ALERT SYSTEM, TEXAS HAS I THINK ABOUT 18. OHIO HAS EACH COUNTY AN MOST STATES HAVE JUST ONE SYSTEM FOR THEIR STATE. IT WAS UP TO THAT INDIVIDUAL STATE COORDINATOR, GUIDELINES THEY PROVIDED TO MAKE? DECISION WHETHER THE CASE THAT'S BEING REPORTD TO THEM BY LAW ENFORCEMENT MEETS THE REQUIREMENTS OF AND A AMBER ALERT. AMBER ALERT IS NOT USEFUL ON EVERY CASE. MOST TIMES WHAT WE FIND HELPFUL IF WE HAVE A DESCRIPTION WE CAN ENGAGE AMBER, GET OUR PARTNER'S LIFE IN THIS CASE WALGREENS THAT WE SEE POPPING UP ON THE HIGHWAYS, THE SHERIFF INFORMATION LOOKING FOR PARTICULAR VEHICLE WITH LICENSE PLATE NUMBER. IN ADDITION TO AMBER DEPARTMENT OF JUSTICE IS RECOMMENDING THE STATE'S ADOPT WHAT WE CALL ENDANGERED MISSING ADVISORY SYSTEM WITHIN THEIR STATES AND REGIONS. MOST STATES ADOPTED THIS, THIS IS WHEN THE CASE MAY NOT REACH ALL THE WAY TO AN AMBER ALERT STATUS,. THESE ARE CASES WE HAVE A DESCRIPTION OF THE CHILD OR THERE'S OTHER DESCRIPTIVE INFORMATION, BUT THAT'S SOMETHING THOSE INDIVIDUALS STATE TO USE IN THINK SYSTEM SO THAT'S TWO SYSTEMS WHEN IT COMES TO MISSING CHILDREN ENDANGERED MISSING ADVISORY AND AMBER ALERT. I HAVE COME TO END OF MY PORTION AND WE CAN REGARDING AMBER ALERT. >> MAYBE HAVE JEFF GO AND WE CAN HAVE DISCUSSION. >> NATIONAL SEPTEMBERER FOUNDATION. WHEN WITH TALK ABOUT WHAT WE ARE DOING, WHAT WE ARE REALLY DOING THROUGH PRIMARILY NATIONAL CENTER IN THE PROGRAM WE RUN, THERE'S ALSO OTHER TECHNICAL ASSISTANCE, TRAINING PROVIDERS THAT WE USE IN OUR MISSING EXPLOITED CHILDREN PROGRAM BUT I THINK BOB OUTLINED IN TALKING ABOUT THE DIFFERENT SYSTEMS, THE MISSING ENDANGERED, WHICH IS THAT SECONDARY LEVEL OF MISSING CHILDREN THAT DON'T REACH THAT AMBER LEVEL SO ALL THE DIFFERENT TRAININGS THAT GO ON. TRAININGS THE CENTER DOES IS SPONSORED BY DEPARTMENT OF JUSTICE, WE ARE USING ANOTHER PROVIDER TO DO AMBER ALERT TRAINING. PARTS OF THOSE TRAININGS INCLUDE YOU GO THROUGH THE CRITERIA WHAT AMBER ALERT CRITERIA IS, IT'S WHAT TO DO WHEN YOU DON'T REACH THE CRITERIA AS WELL. OUR ROLE IS NOT ABOUT DETECTIVED ONES. THEY'RE PROBABLY THE MOST DRAMATIC, THE ONES THAT WE FOCUS ON PROBABLY MORE THAN OTHERS BECAUSE OF THE HIGH PUBLICITY THEY ARE AND THE NUMBERS WE SEE AS WELL AS THE FACT THAT WE'RE DEPARTMENT OF JUSTICE. THESE ARE CRIMES BEING COMMITTED AGAINST CHILDREN, THAT IS PROBABLY OUR FIRST AND FOREMOST CONCERN. BUT WE ALSO RECOGNIZE THE RESOURCES THAT WE HAVE DEVELOPED AROUND TRYING TO PROTECT CHILDREN FROM CRIMES, PARTICULARLY ABDUCTION AND EXPLOITATION ARE OF USE TO THE REST OF THE PUBLIC IN MANY OTHER WAYS. THAT'S WHAT WE TRY TO WORK WITH NATIONAL CENTER, NATIONAL CENTERS ROLE IS AROUND JUSTICE ISSUES, A MUCH BROADER INABILITY TO WORK WITH ALL COMMUNITIES AN TYPES OF CHILDREN THAT ARE MISSING. WE HAVE MADE EFFORTS TO BROADEN THIS, WE DEVELOPED RESOURCES REACHING OUT TO LAW ENFORCEMENT. I THINK THE PIECE BOB BROUGHT UP, THE MOST CRITICAL TO UNDERSTAND ABOUT AMBER, WHEN YOU LOOK AT THAT MAP, THERE'S 18 ONES IN TEXAS, THE CRITERIA IS DIFFERENT. ONE WAS NOT UNDER AGE 17. THAT'S UP TO EACH INDIVIDUAL JURISDICTION TO DEVELOP THEIR OWN CRITERIA. SOME JURISDICTIONS USE UNDER AGE 12. THEY DON'T HAVE TO GO UP TO 17. THEY MAY HAVE A 16-YEAR-OLD, IT DOESN'T FIT THEIR CRITERIA. AND AMBER WILL NOT BE ISSUED FOR THAT EVEN IF THEY KNOW THE CHILD WAS ABDUCTED AND EVEN IF THEY HAVE SUS SECT THAT DIDN'T MEET AMBER CRITERIA. SO IT'S NOT UP TO US AT THE DEPARTMENT OF JUSTICE TO SAY IN THESE SITUATIONS YOU MUST DO THIS. IT IS A VOLUNTARY PROGRAM DONE BY STATES AS BEEN POINTED OUT, ONLY CAN BE DONE WITH LOCAL RESOURCES. WE PROVIDE THROUGH THE CENTER AND FOX VALLEY TECHNICAL COLLEGE TRAINING HOW TO DEVELOP THESE PLANS AND TRAINING LAW ENFORCEMENT ON HOW TO HANDLE MISSING CHILDREN'S CASES, HOW TO ACTIVATE RESOURCES BUT WE DO NOT PROVIDE STATES AND LOCAL AMBER COMMUNITIES, RESOURCES TO RUN THEIR PROGRAMS. SO IT'S NOT REAL EASY FOR THE DEPARTMENT OF JUSTICE TO SAY TO 18 JURISDICTIONS IN TEXAS YOU MUST DO THIS. WE PROVIDE THE TRAINING AND CONTINUE TO WORK WITH THEM. BUT WE CAN'T ALSO SAY WITHIN THE AMBER PROGRAM YOU MUST INCLUDE CHILDREN NOT ABDUCTED. IT IS A PIECE OF LEGISLATION FROM CONGRESS THE WAY THINGS ARE IN WASHINGTON, IT WILL TAKE AN ACT OF CONGRESS TO CHANGE THAT. BUT WE LEARN THE SILVER ALERT IS THE OTHER ONE EVERYBODY IS AWARE OF. STRANGELY A LITTLE FACT THE FIRST SEVERAL YEARS ALZHEIMER'S ASSOCIATION WAS VERY INFLUENTIAL GETTING FUNDING, FUNDING CAME TO THE DEPARTMENT OF JUSTICE, AND ALSO OFFICE 06 JUVENILE JUSTICE, SCRATCHING OUR HEADS HOW DID THE JUVENILE JUSTICE AGENCIER START GET ALZHEIMER'S MONEY. BUT IT WAS MAINLY LOOKING WE HAD SOMETHING THEY WERE INTERESTED IN BUT THAT PROGRAM ISN'T P DIFFERENT THAN THE AMBER PROGRAM. 31 STATES PARTICIPATE IN A SILVER PROGRAM, SET UP SIMILAR WAY USING SIMILAR RESOURCES TOPPING INTO WHAT WAS ESTABLISHED BECAUSE OF WHAT WAS ALREADY DONE, BUT IT'S A DIFFERENT SET OF CRITERIA, IT IS UP TO EACH COMMUNITY TO DEVELOP THAT SILVER PLAN FOR CONCEIVE WEPTS. SO WE'RE ALWAYS WEAVER INTERESTED IN HAVING THESE CONVERSATIONS HOW WE CAN BE OF HELP BUT I WANT TO CAUTION LOOKING AT AIM BEAR AND THINKING THAT AMBER IS THE QUICK FIX WE USE AMBER CAUTIOUSLY BECAUSE OF THE OVERSAT RAIG WE TALK ABOUT NOT JUST AUTISTIC CHILDREN BUT ALL SPECIAL NEEDS CHILDREN WE DON'T WANT AMBER ALERTS TO EVER REACH A PLACE WHERE WE ARE TODAY WITH CAR ALARMS. YOU CAN WALK THROUGH A PARKING GARAGE AND HEAR AN ALARM GO OFF AND YOU DON'T TURN YOUR HEAD AND LOOK. THEY'RE USELESS. BECAUSE SOMEBODY CAN BE BREAKING INTO A CAR THREE CARS DOWN FROM YOU AND YOU'RE NOT EVEN GOING TO PAY ATTENTION AND SAY SOMETHING. SO WE DON'T WANT TO GET TO THAT POINT. BUT WE WANT TO FIGURE OUT HOW TO USE THE RESOURCES THAT WE HAVE AND HOW WE CAN USE THE THINGS THAT HAVE BEEN DEVELOPED TO ASSIST IN RECOVERY OF ALL CHILDREN MISSING, SPECIAL NEEDS CERTAINLY RAISE A HIGHER LEVEL OF CONCERN FOR US AND WE LOOK TO HAVE DISCUSSIONS ABOUT THAT AND UNDERSTAND WHAT WE CAN DO TO SUPPORT NOT ONLY THE AUTISTIC COMMUNITY BUT ALL SPECIAL RECOGNIZE KIDS. AND I THINK BOB POINTEDDED OUT, WE CERTAINLY SEE IN THE DATA AND I READ THE ARTICLE IN PEDIATRICS THE NUMBERS IT'S A VARYING -- IT DOES RAISE SOME ALARMS FOR US AS TO WHAT WE CAN DO AND HOW WE CAN BE BETTER PARTNERS. THANK YOU JEFF AND P THANKS TO ALL THE PARABLISTS. TIME CHECK FOR US WE'RE A HALF HOUR, 45 MINUTES BEHIND. WE NEED TO END BY 5:30. WE OBVIOUSLY NEED DISCUSSION BUT LET ME ASK THE COMMITTEE MEMBERS TO TRY TO BE SHORT AS YOU CAN WITH THE COMMENTS SO BECK GET TO THE OTHER IMPORTANT BUSINESS WE STILL HAVE. HEAD RIGHT TOWN THE TABLE. DAVID I THINK YOU'RE FIRST DOWN THE TABLE WITH YOUR HAND UP. >> REALLY INTERESTING INFORMATION. THANK YOU FOR SHARING IT. IS THERE A WAY TO USE THE REGIONAL VARIATION THAT YOU HAVE IN THE KINDS OF PROGRAMS THAT ARE BEING IMPLEMENTED ACROSS THE COUNTRY TO IDENTIFY MODELS OF EXCELLENCE? SO IF YOU HAVE DIFFERENT STATES OF JURISDICTIONS WITHIN DIFFERENT STATES DOING DIFFERENT THINGS, ARE YOU ABLE TO ATTACH THAT TO DATA TO DATA ON SUCCESSFUL RECOVERY OF MISSING CHILDREN AN SUCCESSFUL RECOVERY OF HISSING CHILDREN WITH SPECIAL NEEDS? >> I DON'T THINK WE HAVE ANY -- I HAVE NEVER SEEN DATA THAT GETS INTO REALLY ASSESSING THE QUALITY OF THE DIFFERENT AMBER SEASONS. I DON'T KNOW THAT -- I DON'T BELIEVE -- WE DON'T ACTUAL HI KEEP THAT DATA BUT AS MR. SLOWIKOWSKI SAID EACH CRITERIA IS A LITTLE DIFFERENT BUT I CAN TELL YOU PROBABLY FROM THE MISSING CHILDREN'S SIDE OF THE HOUSE, PROBABLY THE MOST SUCCESSFUL PROGRAM WE HAVE SEEN ON FINDING THESE CHILDREN. >> SO LET ME RE-ASK THE QUESTION, DO YOU HAVE THE DATA ON -- DO YOU THINK DATA BY JOB FEW OF THE NUMBER OF MISSING CHILDREN WITH SPECIAL NEEDS AND THEIR RECOVERY? >> AS YOU POINT OUT AMBER ALERT IS JUST PART OF THE PROGRAMS THAT ARE BEING RUN. MANY PROGRAMS PROBABLY ALSO IMPLEMENTED DIFFERENT KINDS OF TRAINING, OTHER KINDS OF MATERIALS OR PROCESSES THAT THEY MAY BE DISSEMINATING AND IF YOU'RE ABLE TO WITHIN A GEOGRAPHIC AREA, TIE THAT, TO THE NUMBER OF CHILDREN MISSING THAT MIGHT OFFER YOU INSIGHT TO THE EFFECTIVENESS THAT -- THE COST EFFECTIVENESS OF THESE DIFFERENT KINDS OF PROGRAMS. >> IF I MAY. WE DON'T TRACK THE DATA. A LOT OF DATA WE GET REGARDING MISSING CHILDREN WITH SPECIAL NEEDS WE GET FROM THE NATIONAL AUTISM ASSOCIATION. THE NATIONAL CENTERS ROLE ISN'T TO COLLECT DATA IN THAT SENSE. BUT WE DO WORK INDIVIDUAL CASES, WE LOOK FOR TRENDS AND WHEN ONE THEY SHARED IS TRENDS WE WERE SEEING AND I AGREE WITH WHAT HE SAID IT IS SEASONAL, I WILL TELL YOU WE HAVE HAD ONE OF THE WORST WEEKENDS WE HAVE SEEN IN QUITE A WHILE THIS PAST WEEKEND BECAUSE OF THE HOLIDAY. SO WE ARE ON HIGHER ALERT WHEN THAT HAPPENS SO WHAT I CAN TELL THEM YOU IS 91% MORTALITY RATE WITH CHILDREN, WE DON'T DISPUTE THAT. THOUGH WE CAN'T CONFIRM. >> JOHN. >> WHAT I'M HEARING IS THAT FROM DEPARTMENT OF JUSTICE PERSPECTIVE FIRST OF ALL AM BEFORE ALERTS ARE DESIGNED FOR AB:BXQM1– NOT WANDERING AWAY, AND ABDUCTION IS THE 1% PROBLEM IN SPECIAL NEEDS LAND WANDERING. THE REST OF THE SITUATIONS ARE KIDS WHO WANDER OFF VOLUNTARILY. NOW, IN YOUR COMMITTEE, ALISON, YOU TALKED ABOUT TRACKING DEVICES OR ALERT DEVOICE FOR KIDS UNDER 18 SO THEY CAN BE FOUND BUT REALLY, IT SOUNDS TO ME FROM HEARING THAT 91% DROWNING STATISTIC LIKE WE SHOULD BE STRONGLY ADVOCATING FOR AUTOMATIC FLOTATION VESTS LIKE PEOPLE WHO WORK COMMERCIAL SHIPS ARE REQUIRED TO WEAR. CERTAINLY IF WE WERE GOING TO FIT AUTISTIC KID WITH SOMETHING, AUTOMATIC COLLAR TO KEEP HIM FROM DROWNING DO THE JOB BETTER THAN ALERT DEVICE THAT WOULD FIND HIM. AND I GUESS I WOULD RAISE THAT QUESTION AND I THINK THAT SPEAKS ALSO TO THE ISSUE OF DEPRIVATION OF FREEDOM. NOBODY WOULD REASONABLY ARGUE THAT A PROTECTIVE LIFE VEST DEPRIVES YOU OF FREEDOM IN A WAY A TRACKING DEVICE MIGHT. AND I THINK THEN THAT LEAVES OUR CONCERN WITH THE DEPARTMENT OF JUSTICE MORE IN THE REALM OF LAW ENFORCEMENT AND SEARCH TRAINING WHICH WASN'T THE FOCUS OF THIS AND MEMBER WE NEED A DIFFERENT FOCUS. WHAT DO YOU THINK ABOUT THAT? IT'S OUT OF TURN TO ASK YOU BUT YOU ARE OHIO >> THAT'S A POINT YOU'RE MAKING IS REALLY ECHOING WHAT MR. LOWERY SAID EARLIER WHICH IS THAT THE KIDS WITH AUTISM WHO WANDER PRESENT A UNIQUE SET OF CIRCUMSTANCES AND P REQUIRE A UNIQUE PROTOCOL TO BE IMPLEMENTED IN ORDER TO RESCUE THEM SUCCESS ANY, SO MY FEELING IS GIVEN THAT THAT'S THE CASE, WHAT WOULD BE THE REASON NOT TO FOR LACK OF A BETTER WORD, BRAND THAT PROTOCOL AS AN AUTISM ALERT SO THAT THAT WORD WOULD COMMUNICATE THE NEED FOR THAT SPECIFIC PROTOCOL TO BE IMPLEMENTED? AND THEN MY QUESTION FOR YOU, ARE YOU SAYING THAT IN ORDER TO GET THIS DONE, WHAT WE NEED TO DO AS NEXT STEP IS GO TO CONGRESS AND TRY TO GET THE EQUIVALENT OF THE SILVER ALERT IN ORDER TO GET THE SPECIFIC AUTISM BRAND THAT COMMUNICATES THE SPECIFIC PROTOCOL? IS THAT YOUR ADVICE TO US? >> SO AS A FEDERAL EMPLOYEE, I COULD NOT AND WILL NOT URGE ANYBODY TO LOBBY CONGRESS FOR ANY PARTICULAR THING. BUT I THINK YOU CAN SURMISE FROM THE THINGS THAT HAVE ALERT THEY HAVE A POWERFUL LOBBYING FUND THAT GETS TARGETED FOR THAT I SHALL ISSUES. THAT IS WHAT HAS HAPPENED IN THE PAST. >> (OVERLAPPING SPEAKERS) VERY CLEAR WITHOUT BREAKING THE LAW. >> YOU DIDN'T ANSWER THE QUESTION ABOUT DROWNING PROTECTION. I DIDN'T MEAN THAT FRIVOLOUSLY. I THOUGHT THAT WAS A SERIOUS QUESTION. DID YOU HAVE A THOUGHT ON THAT? >> I THINK IT'S SERIOUS AND WENDY ADDRESSED THAT ISSUE THERE. THIS IS ONE THING THAT WE NEED. IS THE ALERT, SPECIFIC AUTISM ALERT THAT CONVEYS THAT SPECIFIC PROTOCOL. BUT WE ALSO NEED TO HAVE EQUAL ACCESS TO THOSE TRACKING DEVICES RIGHT NOW AVAILABLE TO FAMILIES WHO ARE ABLE TO PAY OUT OF POCKET. THEY'RE NOT COVERED BY INSURANCE. WE NEED OTHER TYPES OF INTERVENTIONS SPECIFICRY FOCUSING ON DRABBING LIKE -- DROWNING LIKE UNIVERSEAL SWIMMING LESSONS. WE TRIED TO TEACH HER TO SWIM NUMEROUS TIMES AN P SHE IS NOT A SWIMMER. THAT'S EXTREMELY SCARY. IF WE WERE ABLE TO TRY THE CREATE AN ABA BASED APPROACH TO SWIMMING, I THINK THAT WOULD BE A GREAT VALUE TO A LOT OF FAMILIES. I DID NOT MEAN TO MINUTEMIZE YOUR COMMENTS, WE SAW FROM THE DATA THAT THE VAST MAJORITY OF KIDS DO DIE FROM DROWNING BUT POINT OUT THAT IS ONE OF THE UNIQUE PIECES SPECIFIC WILL THE KIDS WITH AUTISM AND IT HAS TO BE APPROACHED IN A UNIQUE WAIT. >> CAN I TRY TO ANSWER THAT? REALLY GOOD POINT YOU'RE TRYING TO MAKE, HOW FAR THE SITUATION IS WITH OUR KIDS WHO WANDER, AT RISK OF DROWNING, THEY NEED SOMETHING THAT'S GOING TO BE ON THEM ALL THE TIME SO A TRACKING BRACELET THAT IS NOT REMOVABLE, IS ON 24/7. THEY'RE NOT GOING TO STOP TO PUT ON A FLOTATION DEVICE BEFORE WALKING OUT THE DOOR SO IT HAS TO BE SOMETHING THAT NEVER COMES OFF THEIR BODY. >> THAT'S WHAT I PROPOSE. THE COMMERCIAL MARITIME INDUSTRY LEARND THE HARD WAY AUTOMATIC FLOTATION IS OAR IS MORE EFFECTIVE PROTECTION AGAINST DROWNING THAN SWIMMING LESSONS BECAUSE FACT IS WHEN YOU FALL IN WATER IN THE MIDDLE OF THE NIGHT THE SHOCK WILL OVERCOME YOU EVEN IF YOU KNOW HOW TO SWIM. AND I'M THINKING OF THE KIND OF STUFF WE ISSUE TO PEOPLE WHO WORK COMMERCIALLY WHICH IS VERY WEARABLE AND ABSOLUTELY DESIGNED TO BE ON YOU ALL THE TIME. >> THIS IS JIM BALL. >> GO AHEAD. >> I APPRECIATE WHAT ALL THAT'S BEING SAID AND WHEN WE REALLY LOOK AT IT FROM ALL THE EARLY INTERVENTION WORK WITH WE DOCK WE FOCUS OFTEN WHAT ARE PHASE B, TEACHING APPROPRIATE WATER SKILLS AN WORK ON IT WAS BROUGHT UP EARLIER IN RESEARCH ABOUT POINTING BEING ONE OF THOSE NEUROLOGICAL THINGS THAT WE TEND NOT TO TEACH TO KID BUT LOOKING AT CRITICAL LIFE SKILLS THAT YOUNG ONES NEED, THE FIRST ONE P THAT I ALWAYS AND PEOPLE THAT I WORK WITH FOCUS ON, BAR THOSE WATER SAFETY SKILLS SO IF THEY TO WANDER I HAVE HAD SEVERAL INSTANCES WHERE KIDS THAT I WORKED WITH HAVE WANDERED, HAVE GOTTEN INTO WATER BUT SURVIVED THAT BECAUSE OF THAT WATER SAFETY SKILL. SO I GO BACK TO ALLEY SOP'S POINT SAYING SOME OF OUR KIDS IT'S A LITTLE TOUGHER TO TEACH THEM BUT IF WE START AT A VERY YOUNG AGE AND TEACH THEM HOW TO BE SAFE AROUND WATER, WHEN THEY DO WANDER THAT'S ONE THING WE DON'T HAVE TO LOOK TOWARDS, OTHER THINGS MIGHT HAPPEN BUT THAT'S ONE THING THAT FOR SENSORY REASONS THEY'RE DRAWN TO BUT THEY'RE UNDERSTANDING WHAT TO DO AROUND IT. WE WORKED A LOT WITH THAT. WITH THE SOCIETY ESPECIALLY AROUND OUR SAFE AND SOUND CAMPAIGN ON TEACHING THAT WATER SAFETY SKILL. >> FIRST INTO THANK WENDY FOR STAYING ON THIS AND 2010 OCTOBER BUT ALSO MY FAVORITE IACC MEETING THAT'S WHEN THEY FUNDD THE AUTISM (INDISCERNIBLE) AND I HAVE FEW COMMENTS I GUESS. NUMBER ONE, (INDISCERNIBLE) WE MAKE RECOMMENDATIONS TO CONGRESS AND TO THE SECRETARY. AND I THINK ONE OF THE RECOMMENDATIONS THAT MAYBE WE SHOULD MAKE IS AUTISM WANDER ALER OR WHATEVER IT IS WE WANT TO CALL IN ADDITION AS CASES AND AS PARENTS WE CAN START ADVOCATING HIKE SOME HAVE DONE FORGETTING THAT STUDY AND GETTING CONGRESS ASKING THEM MAYBE STARTING WITH CONGRESSIONAL AUTISM CAUCUS. THEY'RE OVER HUNDREDS ELECTED IF I RECALLS THERE. I WOULD START WITH WITH THE ONES THAT ARE UP FOR ELECTION NEXT YEAR. THEY'RE USUALLY MORE EAGER TO LISTEN. AND I ALSO WANTED TO MAKE A COMMENT AND SAY THAT EVERY/I KNOW JOHN NOT HERE NOW BUT EVERY STATE HAS HOME AND COMMUNITY BASED WAVERS THROUGH CMS WHICH IS FOR PEOPLE WITH DISABLES INCLUDING AUTISM, TO GET SAFETY MODIFICATIONS WHETHER THE ALARMS OR WHETHER THE SAFETY TRACKING, IF YOUR STATE HAS IT BE PERSISTENT, ASK EVEN IF YOU ARE NOT ABLE TO GET AAP TO USE THE CODE YOU CAN GO TO YOUR COUNTY, YOU CAN GO TO YOUR STATEMENT MEDICAID AGENCY, AND ASK FOR THIS. THEY HAVE TO -- BECAUSE IT'S A NECESSARY. I DON'T THINK PARTS ARE AWARE OF THIS AND FAMILIES KNOW. THE ALARMS THEY GET, THE WALL PACKS, MY HOUSE IS PROBABLY IF YOU CAN GET IN YOU CAN'T GET OUT. THERE'S SO MANY LOCKS AND SO MANY DIFFERENT LOCKS AND ALARMS THAT GO OFF AND WE KNOW HE'S TRYING TO GET OUT THE BACKYARD VERSUS THE FRONT BECAUSE IT MAKES DIFFERENCE NOISES. I THINK WE JUST AS PARTS AND AS ADVOCATES WE HAVE TO BE PERSISTENT, EVERY STATE HAS HOME AND COMMUNITY BASED WAVERS THAT ARE DESIGNED TO HELP PEOPLE WITH THE DISABILITIES AND THAT INCLUDES AUTISM. FINALLY, IN TERMS OF GETTING THE TRACKING TO PAY FOR INSURANCE, I MAYBE -- I KNEE AUTISM SPEAKS MAYBE THEY CAN START ONE OF THE THINGS THEY NEED FOR INSURANCE AND GO STATE BY STATE. SOMETIMES YOU HAVE TO TAKE ONE STEP OUT OF THE THE THOUSAND STEPS AND DO IT THAT WAY. >> NEXT. >> WE HAVE BEEN DISCUSSING THIS ISSUE SINCE 2010. MY UNDERSTANDING WAS THE REASON WE HAD THIS MEETING TODAY WAS TO GET FIRM GUIDANCE ONE QUESTION REMANGE WAS REGARDING ALERT SYSTEM SO I ASK THE EXPERTS HERE TODAY BASED ON THE SYSTEM NOW THE AMBER ALERT, SILVER ALERT, THE MISSING ADVISORY ALERTS IN PLACE AND THE INFORMATION THAT YOU HEARD PRESENTED FROM THE NATIONAL AUTISM ASSOCIATION REGARDING THE STATISTICS, WHAT CAN WE DO TODAY TO GET AN ALERT SYSTEM IN PLACE? IS THIS SOMETHING, ARE YOU SAYING THAT IT IS GOING TO TAKE A LONG TIME TO GET SOMETHING SIMILAR TO AMBER ALERT OR SILVER ALERT? SHOULD WE START LOCAL? I KNOW THAT I GET ALERTS ON MY PHONE VERSUS GENTLEMAN WITH ALZHEIMER'S LAST WEEK IN A LOCAL MUNICIPALITY THAT I WAS ALERTED ABOUT AT ONE O'CLOCK IN THE MORNING. FROM THE PRESENTATION THERE WAS SEVERAL CHILDREN WHOSE LIVES COULD HAVE BEEN SAVED WHERE PEOPLE SAW THEM WANDERING AND DIP DO ANYTHING. SO THAT'S WHY WE HAVE THE PANEL HERE TO KNOW WHAT CAN WE DO TO GET THIS ALERT. THAT'S MY QUESTION TO JEFF AND OTHER EXPERTS HERE BECAUSE I REALLY WANT SOME CLOSURE ON THIS, I WANT AN ACTION ITEM. I DON'T WANT THIS TO GO OVER TO ANOTHER MEETING AND WE HEAR AGAIN THAT MORE CHILDREN DIED. >> I'M NOT SURE WE HAVE A NUMBER OF EXISTING SYSTEMS THAT ARE HELPFUL AND BEING USED. BUT I DON'T IF YOU ARE SAYING HOW DO YOU SET UP A AUTISM ALERT SPECIFICALLY TO AUTISM VERSUS ALL SPECIAL NEEDS OR ALL ENDANGERED MISSING CHILDREN THAT DON'T QUALIFY UNDER AN AMBER ALERT, WE ALREADY HAVE THAT TYPE OF SYSTEM IN PLACE. NOW TO MAKE IT MORE SPECIALIZED TOWARDS AMBER, I WOULD SAY I'M NOT SURE IF YOU WANT TO ESTABLISH AN AUTISM ALERT, I THINK THAT PART TAKES A LOT MORE TIME. BECAUSE THEN YOU ARE DEVELOPING SPECIFIC$ CRITERIA THAT DISTINGUISHES THAT POPULATION FROM OTHER MISSING ENDANGERED SPECIAL NEEDS KIDS. AND YOU -- I'M A LITTLE BIT -- WHAT SYSTEM ARE YOU USE SOMETHING MOST CASES HIGHWAY SIGNS ARE NOT GOING TO BE OF HELP FOR THAT SEARCH AND RESCUE. YOU'RE TALKING SECONDARY -- USE OF SECONDARY ALERT SYSTEMS USING THINGS LIKE FACEBOOK AND OTHERS WHERE WE HAVE HAD -- WE PARTNERED WITH THEM UNDER AMBER ALERT TO HELP REGIONALLY DIRECT ALERTS IN OTHER WAYS, THERE ARE SOME GOOD MODELS OUT THERE THAT CAN BE USED. BUT MANY CASES THEY'RE ALREADY BEING USED. >> HOW CAN WE TAP INTO THEM? >> ANY TIME THAT A CHILD IS MISSING, AND LAW ENFORCEMENT MAKES -- I THINK WE HAVE DONE A GREAT JOB REACHING OUT TO LAW ENFORCEMENT TO SAY WHEN A CHILD IS REPORTED MISSING, YOU NEED TO CALL THE NATIONAL CENTER. BECAUSE THE NATIONAL CENTER MOBILIZES RESOURCES FROM THE EXISTING TRAINING THAT'S BEEN DONE AND WHETHER IT'S TRAINING OF THE 91 # OPERATORS -- 911 OPERATORS HOW TO HAND HANDLE DIFFERENT POPULATIONS TO MOBILIZING THE SECONDARY ALERTS AND OTHER THINGS THAT GET PEOPLE OUT OF THEIR HOUSE OR GET PEOPLE AWARE OF MISSING CHILDREN. SO I DON'T KNOW, MY ANSWER IS WE HAVE A LOT ALREADY IN PLACE THAT I THINK WE'RE DOING A GREAT JOB RECOVERING THOUSANDS OF MISSING KIDS EVERY YEAR. WE'RE NOT 100%, THERE'S NO DOUBT ABOUT THAT. WE CAN DO MORE AND WE ARE GOING TO CONTINUALLY LOOK FOR HOW DO WE TRAIN LAW ENFORCEMENT BETTER, HOW DO WE MAKE MORE PEOPLE AWARE OF SPECIAL NEEDS KIDS THAT ARE MISSING CH BUT I DON'T KNOW THAT -- IF THEY'RE ASKING ME HOW TO ESTABLISH A SPECIFIC AUTISM ALERT. YOU'RE GETTING TO A MUCH BIGGER PLACE. >> SPECIFIC AUTISM ALERT BUT SOME TYPE OF SYSTEM THAT'S GOING TO BE EFFECTIVE TO MOBILIZE PEOPLE LOCALLY AND HOW DO WE GO ABOUT -- >> LET ME TAKE THE RIGHT OF THE CHILDREN, LYNN I HEAR WHAT YOU'RE VYING AND IT'S COMING FROM A LOT OF PEOPLE AROUND THE TABLE. WE HEARD A LOT. WE LIKE TO DO SOMETHING. SO I THINK A LOT OF US ARE EDUCATED BY THE DISCUSSION OVER THE LAST MONTHS AND MONTHS ABOUT THIS, HOW ABOUT IF WE -- BECAUSE THE NEW FOLKS AROUND THE TABLE CLEARLY ADD TO THIS DISCUSSION. I THINK IT'S PROBABLY UP TO US TO FIGURE OUT THE SOLUTION AND EXPERTISE AROUND THE TABLE TO DO IT AS WELL AS I THINK OBVIOUSLY THE COMMITMENT TO IT. SEEMS TO ME WHETHER IT BE THE SURVEY RESEARCH POLICY COMMITTEE THAT WE HAVE SOME GROUP OF THIS GROUP COME TOGETHER TO COME TOGETHER TO COME OUT BASED POP WHAT WE LEARNED WITH CONCRETE WHAT ARE THINGS WE CAN DO, SOME THINGS WE MIGHT WISH FOR THAT WE CAN'T DO. BUT THERE ARE SOME OPTIONS THAT WE CAN MAYBE BRING BACK THEN TO THE WHOLE COMMITTEE TO MOVE FURTHER WITH. DOES THAT MAKE SENSE? I DON'T THINK WE'RE ABLE TO GEL ON SOMETHING NOW IN THE NEXT FEW MINUTES. >> WE'RE WILLING TO SIT DOWN AND TALK MORE. I KNOW YOU WANT AN ACTION ITEM BUT ALSO BRING BOB INTO THIS CONVERSATION. WE WOULD JOINTLY MEET WITH WITH YOU BUT ALSO I WANT TO KNOW FROM WHAT WE DO NOW FOR ENDANGERED MISSING CHILDREN, SPECIAL NEEDS CHILDREN WHEN WE REACH OUT WHEN PEOPLE REACH OUT TO THE NATIONAL CENTER, WHAT IS IT THAT WE CAN DO BETTER? WHAT IS IT WE'RE NOT DOING ENOUGH OF? IF THERE'S -- IF THERE'S NOT ENOUGH OUTREACH, IF THERE'S THINGS WE NEED TO DO DIFFERENTLY NOT EVERY CONTRIBUTE HI MISSING CHILD UNDER EVERY CIRCUMSTANCE SHOULD BE AMBER CRITERIA. FEW CHILD ABDUCTS ARE EVER REALLY WITNESSED IF IF YOU CAN UNDERSTAND THAT PIECE. A LOT ARE JUST UNEXPLAINED DISAPPEARANCES OF CHILDREN. TO ANSWER YOUR QUESTION THOUGH WHAT THIS COMMITTEE CAN DO, ONE UPHILL CHALLENGE WE FACE IS EDUCATION AND THE AWARENESS PIECE BECAUSE I THINK THERE'S A BIG DISCONNECT WHEN LITTLE COMES TO THE UNDERSTANDING OF AUTISM AND WHAT HAPPENS WHEN CHILDREN GO MISSING. ONE THING WE COAT THE NATIONAL CENTER IS MOPTOR REPORTS 24 HOURS A DAY. WE ALSO HAVE UNPREDENTLY HAVE AUTISM NATIONAL ASSOCIATION AND WELCOME OTHER ASSOCIATIONS AS WELL THE CALL THE 800 LOSS NUMBER 24 HOURS A DAY WHEN YOU BECOME AWARE OF A CHILD WITH AUTISM THAT'S BECOME MISSING IN YOUR COMMUNITY THAT WE'RE NOT YET AWARE OF AND WE'LL MOBILIZE RESOURCES QUICKLY FOR YOU. AT FASTER PACE THAN YOU CAN IMAGINE AND WE HAVE BEEN DOING THAT WITH NATIONAL AUTISM AND ANOTHER GROUP. >> WE HAVE TO COME TO CLOSURE WITHIN THE NEXT COUPLE OF MINUTES LITERALLY. IF YOU HAD NOT JUST COMMENTS BUT SPECIFICALLY HOW THE GROUP SHOULD MOVE FORWARD THEN KEEP YOUR HANDS UP AND WE'LL GO AROUND THE TABLE BUT IT HAS TO BE QUICK AND BRIEF PLEASE. >> OKAY. VERY QUICK, VERY BRIEF. YOU HAVE THE ANSWERS, SOME OF THE ANSWERS IN THE PRESENTATION, SOME OF THE PRESENTATION WE SAW WAS VERY SUCCESSFUL, RECOUGHRY OF CHILDREN BECAUSE OF THE FACT LAW ENFORCEMENT WAS PROPERLY TRAINED. IF WE HAD AN AUTISM ALERT IF WE SEPTEMBER OUT A MESSAGE TO LAW ENFORCEMENT, WE HAVE AN AUTISM ALERT WHERE YOU HAVE IMMEDIATELY LAW ENFORCEMENT KNEW THEY WERE LOOKING FOR AN AUTISTIC CHILD OR AN AUTISTIC ADULT, THEY WOULD KNOW EXACTLY WHAT TO DO BECAUSE THEY WERE TRAINED PROPERLY. THAT'S ONE. NUMBER TWO, DURING THE ARAB SPRING I KNOW WHAT WAS HAPPENING BECAUSE THE FACT I WANTED SOCIAL MEDIA, FACEBOOK, TWITTER AND SO ON. WE HAVE TO USE SOCIAL MEDIA. THIS IS A TECHNOLOGY -- TECHNOLOGICALLY ADVANCED SOCIETY. WHY AREN'T WE USING SOCIAL MEDIA BETTER? THAT'S SOMETHING WE CAN DO TODAY. >> SCOTT. >> SO I'M WONDERING BRIEFLY, I THINK WE HAVE HAD VERY INFORMATIVE DISCUSSION ON WANDERING AND IT'S BEEN DISCUSSED FOLKS MENTIONED OVER THE LAST FEW YEARS, WONDERING IF THIS HELPS INFORM BROAD ANY DISCUSSION TO OTHER VICTIMIZATION ISSUES INCLUDING THAT EXPLOITED SIDE OF THE NATIONAL CENTER FOLKS THAT ARE VICTIMIZED AND ABUSED SEXUAL ABUSE, BECAUSE AUTISTIC INDIVIDUALS LIKE EVERYBODY WITH WITH DISABILITIES MAYBE MORE LIKELY TO THOSE THINGS AN FOR INSTANCE KIDS DYING FROM THINGS HIKE COMMITTING SUICIDE BECAUSE OF BULLYING VICTIMIZATION, THAT NEVER GETS DISCUSSED HERE BUT KIDS, I HAVE KNOWN OF SITUATIONS WITH THAT. SO I THINK WE HAVE TO MAKE SURE WE DON'T GET TOO NARROW ON VICTIMIZATION ISSUES WE CONSIDER ALL THESE ISSUES THAT AFFECT AUTISTIC TEENS AND ADULT THES EVERY DAY. THEY'RE NOT GETTING DISCUSSEDDED AT THIS TABLE BUT I HEAR ABOUT IN THE COMMUNITY AND AROUND THE COUNTRY WHEN I VISIT AROUND THE CHALLENGES THAT FACE FOLKS IN VICTIMIZATION ECLOSES -- ACROSS THE LIFE SPAN. >> COME UP THE TABLE. >> TWO HINGS. FROM WHAT I'M UNDERSTANDING, I THINK WE HAVE TO DO IT LOCALLY, INITIALLY AND TRAINING THE FIRST RESPONDERS THROUGH AUTISM SPEAKS OR WONDERFUL FAMILY THAT HAS A WRITTEN PROTOCOL FOR FIRST RESPONDERS WOULD BE HELPFUL. SECONDLY AS A PEDIATRICIAN, NOW I'M MORE AWARE BUT CODE FOR WANDERING, I USE THE GUIDANCE FOR FAMILIES AND CHILDREN MORE LIKELY TO ELOPE. BUT I THINK ENCOURAGING PEDIATRICIANS TO WRITE A PRESCRIPTION FOR TRACKING DEVICES WITH THE CODE THAT'S PROVIDED TO HAND TO THE PARENTS BEFORE THE CHILD IS ABLE TO RUN WOULD BE HELPFUL. >> WALTER YOUR HANDS UP? >> I THINK A GROUP GET TOGETHER AND WORK ON THIS, WE COULD DO A LOT. SOME THINGS MIGHT TAKE TIME BUT THERE'S A LOT OF STUFF WE CAN DO QUICK. I REMINDED OF PREVIOUS HEALTH CAMPAIGNS I HAVE BEEN INVOLVED WITH TO HAVE MULTI-PRONGED APPROACHES, THEY DO HAVE THE ORGANIZATIONS WHO CAN REACH OUT FOR THE FAMILIES THAT HAVE LOCAL PRESENCE CAN GET IT DONE. FROM THE GOVERNMENT STANDPOINT YOU NEVER GET THIS DONE BUT WE AS A GROUP COULD MOVE IT. >> IS THAT A MOTION FOR RE-ESTABLISHING THE SAFETY SUBCOMITTEE? >> ALISON. >> IN RESPONSE TO YOUR WHAT SPECIFICALLY SHOULD WE DO, WITH MISSING ENDANGERED ALERT THROUGH THE NATIONAL CENTER IF THERE WAS SOME WAY TO SUBGRANT THAT AUTISM ALERT SO IT COMMUNICATES TO ALL THE FIRST RESPONDERS THE UNIQUE PROTOCOL THAT NEEDS TO BE IMPLEMENTED WHEN YOU HAVE A CHILD WITH AUTISM VERSUS A CHILD WITH OTHER TYPES OF SPECIAL HEALTHCARE NEEDS. I THINK THAT WOULD BE ONE STEP FORWARD AND ALSO I WANT TO KNOW WHETHER TO DO IN ORDER TO INITIATE THE SYSTEM LYNN WAS DESCRIBING TO GET LOCAL TEXT. WE SAW SEVERAL CASES WENDY PRESENTED THAT PEOPLE SAW THE KIDS. AND THEY JUST DIDN'T KNOW THEY WERE MITSING SO IF THOSE LOCAL TECHS WERE ABLE TO BE SENT OUT THROUGH PHONES, THROUGH FACEBOOK, I THINK THAT WOULD SIGNIFICANTLY HELP BECAUSE WE KNOW THE CONSENSUS LEVEL, THEY'RE NOT GETTING IN CARS BEING DRIVEN ACROSS STATE LINES SO WE DON'T NEED HIGHWAY SIGNS BE WE NEED TEXTS TO NEIGHBORS AT ONE TIME SO EVERYONE IN MY NEIGHBORHOOD WOULD KNOW THEY SAW MY DAUGHTER ROAMING THROUGH THE WOODS BEHIND OUR HOUSE THAT THEY MIGHT WANT P TO GET HER AND BRING HER BACK. SO THOSE WOULD BE MY TWO SUGGESTIONS. >> QUICKLY, I GUESS LEARNING FROM THE LESSONS WITH THE ICD-9 CODE. WE CAN MAKE A CODE, WE CAN MAKE AN ALERT, IF WE DON'T HAVE THE COMPLIMENTARY PROMS EDUCATION AND TO INCENTIVIZE THE THINGS THAT GO WITH IT, IT DOESN'T DO ANYTHING SO WE HAVE TO THINK ABOUT THAT. I WOULD SECOND WALTER AND LYNN SUGGESTION TO RE-ESTABLISH OUR COMMITTEE TO GO FORWARD ON THIS. >> ALSO TAKE JEFF UP ON HIS OFFER TO MEET WITH THIS MORE AND HAVE THE SAFETY SUBCOMITTEE BACK WITH RECOMMENDATIONS FOR THE NEXT MEETING. >> IF I COULD, MISSING CHILD OR MISSING ENDANGERED ALERT WOULD FIT INTO THE CRITERIA OF A CHILD WITH AUTISM. WE USE THAT WHEN WE HAVE THE UNUSUAL DISAPPEARANCE OR THE UNEXPLAINED DISAPPEARANCE OF A CHILD BECAUSE IT DOESN'TN'T REACH AMBER. AMBER DOES REQUIRE THE ABDUCTION BUT ALSO ENOUGH INFORMATION TO SHARE WITH THE PUBLIC THAT WILL HELP RECOVERY OF THAT CHILD. SO THE SYSTEM IN IN PLACE FOR THAT AND THAT'S WHAT WE'RE ASKING FOR. >> THE FIRST RESPONDERS, WE ALSO HAVE TO COMMUNICATE IT TO LOCAL NEIGHBORHOODS. -- NEIGHBORS WHO MAYBE IN A POSITION -- >> YOU'RE RIGHT. THIS IS WHY WE USE A CHILD THAT'S MISSING -- REVERSE 911 CALL IN EACH HOME SO WE CAN ALERT THE NEIGHBORS AND WE DO THAT NOW WITH CHILDREN WITH SPECIAL NEEDS. >> YOU GOT THE LAST COMMENT. >> NICE THING ABOUT BEING LAST, ALMOST EVERYTHING HAS BEEN SAID. I THINK THE THING YOU SAID, BY THE WAY I THOUGHT YOUR PRESENTATION WAS EXTREMELY THOUGHTFUL AND YOU OUTLINED A BEAUTIFUL TRAINING PLAN RIGHT THERE. BUT WHAT REALLY TRUCK ME, WE TRAINED A THOUSAND PEOPLE AND THAT MUST BE A DROP IN THE BUCKET REALLY. SO I THINK TRAINING IS KEY. WHAT I WOULD LIKE TO DO IS MOVE THAT WE RE-ESTABLISH THE SAFETY SUBCOMITTEE WITH AT LEAST TWO GOALS. ONE, TO WORK WITH THE TWO OF YOU ON BOTH -- PARTICULARLY WITH EMPHASIS ON TRAINING BECAUSE I THINK TRAINING IS CRITICALLY IMPORTANT. BUT OTHER SUGGESTIONS THAT MIGHT COME OUT OF THAT DISCUSSION AS WELL AS TO WORK WITH JIM PERRIN TO SEE WHAT CAN BE DONE PROVIDING FREE ACCESS TO THE TOOL KIT, ANTICIPATORY GUIDANCE AND SO FORTH AS WELL AS ANY OTHER THAT MIGHT COME UP IN THE CONTEXT OF THAT CONVERSATION. >> I'M GETTING WHISPERING FROM STAFF THAT WE HAVE ENOUGH -- WE HAVE SO MANY COMMITTEES NOW THAT STAFF I DON'T THINK WE HAVE -- THE QUESTION WAS STAFF, ANOTHER STANDING COMMITTEE OPPOSED TO CREATING AN AD HOC GROUP TO DEAL WITH THIS THAT WOULD MEET BRIEFLY WHATEVER BUT I THINK THERE'S SOME CONCERN, WE JUST DON'T HAVE STAFF ESTABLISH ANOTHER STANDING COMMITTEE. THAT A CORRECT READING OF THE SITUATION IN >> WE HAVE TWO SUBCOMITTEES NOW, WE CAN FORM OTHER PLANNING GROUPS UNDER THE SUBCOMITTEES, WE CAN FORM ANOTHER SUBCOMITTEE BUT THERE WAS ANOTHER PROPOSAL FOR ANOTHER SUBCOMITTEE, WE NEED TO FORM ANOTHER SEVEN PLANNING GROUP THIS IS FALL. IT'S A LOT OF DIFFERENT GROUPS FOR EVERYBODY TO BE INVOLVED IN I DON'T KNOW IF WE CAN USE ANY PRESENT STRUCTURES TO THREAT GET THIS DONE. IF THIS IS SOMETHING SHORT TERM GROUP TO GET TOGETHER AND GET A PROJECT DONE OR A STANDING GROUP TO EXIST UNTIL THE END OF THE COMMITTEE. >> HOW ABOUT WE HAVE MEETINGS OF THE SUBCOMITTEE ON POLICY AND PRACTICE I GUESS. >> SERVICE T AND RESEARCH. >> AND THERE BE A FOCUS ON THIS AND EVERYBODY INTERESTED IN ATTENDING THAT MEETING. >> THAT WOULD BE CLEANER. I THINK ETCH COMMITTEE MEMBERS ARE GETTING MIXED UP ABOUT WHAT GROUP YOU'RE ON BECAUSE YOU'RE ON SO MANY. SO IF WE CAN KEEP THE GROUP ORGANIZED THAT WILL HELP BUT WE CAN HAVE A SPECIAL MEETING ON THIS TOPIC. >> SO YOU'RE ASSIGNING THIS TASK INTO THAT GROUP AND OTHERS WHO WANT TO JOIN THE GROUP FOR THIS PURPOSE COULD DO SO. >> IF THAT WORKFORCE THE COMMITTEE THAT'S ONE POSSIBLE WAY TO DO IT. >> IS THERE A SECOND TO THAT MOTION? >> SECOND. >> ALL IN FAVOR? >> AYE. >> OPPOSED. ON THE PHONE ALL IN FAVOR? >> YES IN FAVOR. >> ANY OPPOSED ON THE PHONE? >> ALL IN FAVOR. >> AYE. >> IN FAVOR. >> THANK YOU ALL VERY MUCH. >> WE DISSENTENCED OVER HERE. -- DISSENTED OVER HERE. >> I THINK IT WAS A CLEAR ENOUGH VOTE GIVEN THE HOUR, THAT WE'RE 55 MINUTES BEHIND I BELIEVE WITH ONLY AN HOUR LEFT, THIS IS GOING TO BE QUITE A TRICK. SO THANKS AGAIN EVERYONE FOR THAT DISCUSSION. OBVIOUSLY A ALREADY RICH ONE. MOVE ON TIPS FOR EARLY CARE, AND EARLY CARE PROVIDERS. SHANTEL MEEK WILL BE TALKING ABOUT THAT. >> THANK YOU. GOOD AFTERNOON. IN THE INTEREST OF TIME I'LL BE AS BRIEF AS POSSIBLE. SO I'M HERE TO AT THIS THE CUSS TODAY TIPS FOR EARLY CARE AN EDUCATION PROVIDERS THAT THE ADMINISTRATION FOR CHILDREN AND FAMILIES AND MIND JOINTLY WORKED ON TOGETHER AN DISSEMINATED TO EARLY CARE PROVIDERS AROUND THE COUNTRY. BEFORE I DIG INTO THE MEAT OF THE ACTUAL PROJECT, I WANT TO LAY A LITTLE CONTEXT TO EXPLAIN WHERE WE COME FROM, THE EARLY CHILDHOOD DEVELOPMENT OFFICE WITHIN ARCCS OVERSEE IT IS HEAD START PROGRAM, THE FEDERAL CHILD CARE PROGRAM AND EARLY CHILDHOOD INITIATIVES THAT HELP CHILDREN AND FAMILIES PRENATALLY THROUGH H-5. TO GIVE YOU A BIT OF OVERVIEW ON HOW VAST OUR REACH IS NOT DIRECTLY THROUGH FEDERAL PROGRAMS BUT THE WHOLE EARLY CARE AND EDUCATION SYSTEM, NEARLY 11 MILLION CHILDREN UNDER AGE 5 ARE IN -- ABOUT 35 HOURS. NEARLY 1.7 MILLION CHILDREN RECEIVE A FEDERAL CHILD CARE ASSISTANCE FROM THE CHILL CARE DEVELOPMENT FUNDS. AND HEAD START PROGRAMS HAVE SEEN NEAR HI 1 MILLION CHILDREN. SO GIVEN THE NUMBERS OF CHILDREN AND FAMILIES THAT WE SERVE I THOUGHT IT SUPPORTING OUR KIDS DURING TIME IN THE CLASS ROOM OR IN HOMES. SO UNLIKE THE K-12 SYSTEM THAT HAS VARIOUS REQUIREMENTS IN TERMS OF DEGREE REQUIREMENTS, TRAINING, THINGS LIKE THAT, THE EARLY EDUCATION SYSTEM IS VERY VARIEDED. IT DEPENDS ON WHAT STATE YOU LIVE IN, DEPENDS ON WHAT FUNDING STREAM YOU'RE GETTING MONEY FROM, DEPENDS ON WHAT PROGRAM IT IS. SO RECENT STUDY FOUND THAT JUST OVER 40% OF SENT-BASED EARLY CARE EDUCATION PROVIDERS LISTED A HIGH SCHOOL DIPLOMA AS THE HIGHEST DEGREE OF PAYMENT. FOR HOME-BASED PROVIDERS THE MAJORITY OF INFANTS AND TODDLERS ARE, WE FOUND OVER 50% OF THOSE PROVIDERS LISTED HIGH SCHOOL DEGREE AS THEIR HIGHEST DEGREE ATTAINMENT. FOR THE HEAD START PROGRAM IT LOOKS DIFFERENT BECAUSE THEY'RE A-- THERE ARE STATUTORY REQUIREMENTS, THEY HAVE BACHELOR'S DEGREES SO FOR THE HEAD START PROGRAM WHICH PROVIDES SERVICES FOR THREE AND FOUR-YEAR-OLDS WE HAVE 64% HOLDING A BA. SO WHEREAS FOR EARLY HEAD START WHICH SERVES MOTHERS PRENATALLY THROUGH CHILDREN AGE -- THROUGH AGE 2, WE HAVE 60% WITH AT LEAST A TWO YEAR DE PERSZ WITH AT LEAST A TWO-YEAR DEGREE. SO A LITTLE BIT BETTER. BUT GIVEN THE MILLIONS OF CHILDREN AND FAMILIES OF EARLY CHILD EDUCATION SYSTEM THAT'S IN DAILY BASIS AND GIVEN THE CRITICAL PERIOD FROM AGE BIRTH TO AGE FIVE, AC F TEAMED UP WITH NIH HD AND WE QUERID A HANDFUL OF AUTISM RESEARCHERS AROUND THE COUNTRY AND WE ASKED THEM IF YOU COULD GIVE EARLY CHILD PROVIDERS ONE TIP, WHAT WOULD IT BE? AND OF COURSE WE HAVE THEM KEEP IN MIND THEIR EDUCATION AND LITERACY LEVEL. ASSUMING NO SUPPLEMENTAL SUPPORT OR TRAINING, LOW WAGES AND CLASSROOMS, ET CETERA. AND SO WE GOT ABOUT A 54 PERCENT RESPONSE FROM RESEARCHERS. WE MODIFIED SOME OF THE LANGUAGE TO BRING DOWN THE READING LEVEL A BIT. WE ADDED A FEW TANGIBLE EXAMPLES WHERE THERE WEREN'T ANY. WE CIRCULATED PARTNERS AT CDC AND NIH AND WE DISSEMINATED TO OUR EARLY CHILDHOOD SYSTEMS. SO THESE IN THE NEXT SLIDE ARE THE TIPS THAT WE GOT. AND IT REALLY COVERED A WIDE ARRAY OF DEVELOPMENTAL DELAYS AND DIFFERENT STRATEGIES. SO WE ARE ENGAGING CHILDREN IN PLAY, USING CHILDREN INTEREST, PROMOTING CHILD PARTICIPATION, VISUAL CUES, BOOK-SHARING. I'M COVERING LEARNING POTENTIAL, PREDICTABLE SPACES AND DISTRACTING AND REDIRECTING CHILDREN TO ENGAGE IN MORE APPROPRIATE BEHAVIOR. I'M NOT GOING TO GO INDEPTH WITH ALL OF THESE TIPS BUT I'LL GO IN DEPTH WITH ONE OF THEM JUST TO ILLUSTRATE WHAT THE DOCUMENT LOOKS LIKE. CONNIE CASTERY, WHICH IS A RESEARCHER OUT OF UCLA WHO PRESENTED AT THE LAST MEETING, SUBMITTED HER CONCEPT OR TIN AND IT WAS ENGAGING CHILDREN IN PLAY. AND SO THE FIRST THING WE ASKED RESEARCHERS FOR WAS REALLY THE WHAT. SO WHAT CONCEPTS ARE WE TRYING TO PORTRAY? WHAT EXACTLY IS IT THAT WE'RE ASKING PROVIDERS TO DO? SHE GOES ON AND DESCRIBES THAT SOCIAL PLAY INVOLVES ENGAGEMENT BETWEEN A PEER OR A TEACHER AND THE TARGET CHILD AND AN OBJECT. AND THEN WE ASKED ALL OF THE RESEARCHERS TO REALLY DESCRIBE WHY IT WAS IMPORTANT, BECAUSE IF PROVIDERS UNDERSTAND A LITTLE BIT BETTER WHAT THESE SKILLS AND PRACTICES RELATED TO, THEY WERE A LITTLE BIT MORE LIKELY TO DO IT. AND SO OBJECT PLAY AND IMPORTANT DEVELOPMENTAL SKILLS INCREASES COMMUNICATION BETWEEN PARTNERS. AND THEN FINALLY AND PROBABLY THE MOST IMPORTANT PART, WE ASKED THEM TO BREAK DOWN STEP BY STEP IN THE SIMPLEST LANGUAGE POSSIBLE HOW TO IMPLEMENT THE CONCEPTS THAT THEY HAD PROPOSED. AND SO YOU SEE HERE DR. CASERRI STEP ONE, PROVIDES DEVELOPMENTALITYATLY APPROPRIATE TOYS. ONCE THE CHILD BEGINS TO PLAY WITH THE TOY, JOIN IN AND IMITATE WHAT THE CHILD IS DOING. BUILD ON THE ACTIVITY BY TAKING TURNS AND MAKING SURE TURNS ARE BALANCED. ONCE THE PLAY ROUTINE IS SOLID, EXPAND ON THE PLAY ROUTINE. WE PROVIDE A COUPLE OF EXAMPLES, SO IF YOU'RE TAKING TURNS STACKING BLOCKS TO BAILED TOWER, YOU MIGHT EXPAND IT BY KNOCKING DOWN THE BLOCKS, WHICH MAY INCREASE MOTIVATION AND ALSO MAKE THE INTERACTION LONGER. IF THE CHILD HAS MAEFRDZ TAKING TURNS BUILDING AND KNOCKING DOWN THE BLOCKS, YOU MIGHT ADD A TOY FIGURE TO THE TOP OF IT OR ADD A TRUCK TO EXTENDS IT EVEN MORE. AND THEN THE FINALLY ROUCHE FINAL STEP IS KIND OF AN EVALUATION PIECE TO LOOK AT THE CHILD'S ATTENTION AND ENGAGEMENT AND ENJOYMENT OF THE ACTIVITY TO SEE IF THE PLAY PRUDENT IS MOTIVATING BECAUSE THE MORE MOTIVATING, THE LONGER THE PLAY ROUTINE AND THE GREATER THE OPPORTUNITY FOR COMMUNICATION SKILLS. AND SO, LIKE I SAID, I'LL GO INTO ONE ALSO BECAUSE OF SHORTNESS OF TIME. BUT THE COMPLETE DOCUMENT -- I'M NOT SURE IF YOU HAVE ANY HARD COPY IN YOUR PACKETS, BUT IT'S ON THE IYAK WEBSITE. A COUPLE OF NEXT STEPS FOR THIS IMMEDIATE PROJECTS. THERE HAS BEEN DISCUSSIONS BETWEEN CDC, NIH HD AND AFC. F. AND VIDEO TO POTENTIALLY CREATE A HYBRID VERSION OF THE DOCUMENT FOR FURTHER SIMPLEFICATION FOR LOWER LITERACY AUDIENCES. SO DOING THOBY PAIRING DOWN THE LANGUAGE AND ADDING PICTURE-BY-PICTURE STUFF IN HOW TO IMPLEMENT EACH OF THESE CONCEPTS. BUT I THINK THE LARGER QUESTION THAT AC F IS KIND OF GRAPPLING WITH AND THAT THIS GROUP SHOULD BE THINKING ABOUT IS WHAT RESEARCH WE NEED TO REALLY APPROPRIATELY SUPPORT EARLY CARE AND EDUCATION PROVIDERS INITIATE. -- NATIONWIDE. WE NEED TO BE LOOKING INTO WHAT THE MINIMAL EDUCATION TRAINING AND KNOWLEDGE IS NECESSARY TO HAVE PROVIDERS PROVIDE APPROPRIATE SUPPORT TO THE KIDS ON THE SPECTRUM AND WITH OTHER DEVELOPMENTAL DISABILITIES AS WELL. WE NEED TO KNOW WHAT OTHER STRATEGIES CAN BE EMBEDDED IN EXISTING RESTAURANTS AND BE IMPLEMENTED WITH FIDELITY. IS IT REASONABLE TO EXPECT WITHOUT ADDITIONAL TRAINING THE SUPPORT FOR THEM TO BE ABLE TO EMBED THESE SIMPLE TIPS INTO EVERYDAY ROUTINE? AND THEN FINALLY ASSURING THAT OUR SYSTEMS ARE REALLY LINKED THAT THE EARLY INTERVENTION SYSTEM IS LOOPING BACK WITH THE EDUCATION SYSTEM AND THAT WE DON'T EXPECT CHILD CARE PROVIDERS TO BE THE EARLY INTERVENTIONISTS BUT WE THINK IT'S REASONABLE TO EXPECT THAT THEY AT LEAST UNDERSTAND THE SERVICES THAT THEIR STUDENTS ARE GETTING OUTSIDE OF THE CLASSROOM OR HOME IN THE EARLY INTERVENTION SYSTEMS SO THAT THEY CAN SUPPORT AND FURTHER ADVANCE THE CHILD'S GOALS. SO FOR CHILD AND SPEECH THERAPIES PRACTICING THE TH SOUND AND THE CHILD PROVIDERS CAN PROVIDE COUNTLESS ADDITIONAL OPPORTUNITIES THROUGHOUT THE DAY TO ADVANCE THEIR GOALS. AND FINALLY I THINK THE LAST POINT TO MAKE IS THAT MAKING SURE THAT EARLY CHILD CARE PROVIDERS ARE -- HAVE THE SKILLS THEY NEED AND THE KNOWLEDGE THEY NEED TO APPROPRIATELY SUPPORT OUR KIDS ON THE SPECTRUM. IT'S NOT ONLY GOOD TO IMPROVE CHILDREN'S SKILLS AND TO HELP THEM GROW FASTER. IT'S ALSO A BIG STEP TOWARD INCLUSION, BECAUSE IF EARLY CHILD CARE EDUCATION PROVIDERS FEEL SUPPORTED AND FEEL LIKE THEY KNOW WHAT AUTISM IS, THEY ARE MORE LIKELY POTENTIALLY TO FOSTER AN ATTITUDE AND AN ENVIRONMENT OF EXCLUSIVITY RATHER THAN THEM BE NERVOUS ABOUT ACCEPTING A CHILD WITH AUTISM IF THEY DON'T KNOW AT ALL WHAT TO DO WITH VERY LOW TRAINING AND EDUCATION LEVELS. SO I THINK LOOKING MORE INTO KIND OF THE RESEARCH OF WHAT EXACTLY WE NEED TO REALLY SUPPORT EARLY EDUCATION PROVIDERS, GETTING 0 TO 5 RANGE AND HOW IMPORTANT WE KNOW IT IS AND FWIFRN THE NUMEROUS HOURS THAT WE SEE KIDS IN EARLY EDUCATION SETTINGS. WOULD BE A BIG STEP. SO I WILL WRAP IT UP. >> THANK YOU VERY MUCH, CHANTEL. WE ARE CLOSE TO LOSING OUR QUARUM, IN WHICH CASE WE WOULD HAVE TO CEASE BUSINESS, I THINK WE ARE GOING TO CONDENSE THE 20 MINUTES THAT IS THERE FOR THE SCIENTIFIC UPDATE INTO LESS THAN FIVE MINUTES, CORRECT? FIRST VERY QUICKLY GO THROUGH THE SLIDES JUST TO GIVE YOU A GLIMMERING -- MAYBE WHILE WE'RE WAITING FOR THAT TO CUE UP, I WILL TELL UT ONE THING THAT TOM WANTED TO MAKE SURE THAT I MENTION TO YOU -- THOUGH SOME OF YOU EXPERIENCED IT BECAUSE I REMEMBER SEEING YOU THERE -- THAT IT'S WORTH NOTING THAT ON APRIL 2ND, WHICH NOT WAS NATIONAL AUTISM DAY, THE PRESIDENT HELD AN EVENT IN THE EAST ROOM OF THE WHITE HOUSE, IN WHICH HE ANNOUNCED THE -- ALONG WITH THE DIRECTOR OF THE NIH THE PRESIDENT'S BRAIN INITIATIVE, WHICH IS CLEARLY STILL BEING DEFINED BUT IT IS A MULTIAGENCY PART OF THE FEDERAL GOVERNMENT BUT WITH PRIVATE PARTNERS, FEDERAL INVESTMENT IN THE UPCOMING FISCAL YEAR OF $110 MILLION TO GET IT LAUNCHED. WITH THE HOPES THAT IT WOULD GROW, BECAUSE THE SCIENCE WILL BE SO COMPELLING. THIS WILL BE TO TRY TO BETTER DEFINE EXACTLY WHAT THIS COULD DO. BUT THE IDEA THAT IT REALLY IS THE MOST AMBITIOUS, COORDINATED EFFORT TO REALLY UNDERSTAND THE WORKINGS OF THE HUMAN BRAIN AND THE VERY CLEARLY -- THAT VERY CLEARLY THIS WILL NOT ABOUT A TYPICAL HUMAN BRAIN BUT A HUMAN BRAIN. AND I THINK MANY THINGS AND IT'S NOT A COINCIDISTANCE THAT IT WAS ANNOUNCED ON NATIONAL AUTISM DAY. BUT CLEARLY THAT'S ONE OF THE ENUNCIATED INTERESTS OF THE ADMINISTRATION IN LAUNCHING THIS. SO WE HAVE HIGH HOPES FOR IT BUT WE'RE STILL AWAITING A DEFINITION FOR IT. I WOULD IMAGINE AT SOME POINT IT'S SOMETHING THAT THE COMMITTEE MIGHT WELL WANT TO HEAR AND DISCUSS FULLY AND IN THE FUTURE WE MIGHT DO THAT. BUT MAKE SURE THAT EVERYONE IS AWARE OF THAT. AND SUSAN, YOU HAVE A QUICK SLIDE SHOW FOR US? >> YES. AND IS THERE ANYBODY ON THE PHONE WITH US STILL? >> CALLER: YES, THIS IS LINDA AND THERE WERE TWO OR THREE THINGS I WANTED TO BRIEFLY MENTION, IF POSSIBLE. >> SURE. >> CALLER: SO ONE OF THEM IS THAT THERE WAS A PRESS ANNOUNCEMENT THIS MORNING ABOUT COMING OUT OF THE INSTITUTE SHOWING SPECIFIC PATHOGENS MESSAGES THAT ARE ATTACKED BY MATERNAL ANTIBODIES AND A SIGNIFICANT NUMBER OF CHILDREN WITH AUTISM THAT THEIR MOTHERS HAD THESE ANTIBODIES. SO THEY COULD BE DETECTED AS EARLY AS 13 WEEKS. AND BY 30 WEEKS, THESE ANTIBODY LEVELS IN THE FETUS ARE ABOUT HALF THAT OF THE MOTHER AND AT BIRTH EVEN GREATER THAN THE MOTHER. SO I THINK THIS IS AN INTRIGUING NEW FINDING THAT GOES ALONG WITH SOME OF THE STUFF WE HEARD THIS MORNING ON ANTIBODIES. I WANTED TO ALSO MENTION THAT THERE IS ADDITIONAL DATA SHOWING AN ASSOCIATION BETWEEN AIR POLLUTION EXPOSURE AND AUTISM, AND THIS ONE IS COMING FROM THE LONGITUDINAL NURSES HEALTH STUDY. LOOKING AT THEIR CHILDREN RELATED TO THE EXPOSURE THESE WOMEN HAD RELATED TO WHERE THEY LIVED IN THE -- AND I DID REALLY WANT TO MENTION THAT ANYEHS WILL BE SPONSORING A WEBINAR ON AUTISM ON THE ENVIRONMENT ON TUESDAY, SEPTEMBER 17TH, AND I'LL BE SENDING OUT INFORMATION ABOUT THAT. I JUST WANTED TO MAKE THOSE POINTS. >> THANK YOU, LINDA. DO SEND THE INFORMATION AND WE'LL SEND IT OUT TO THE WHOLE COMMITTEE. >> CALLER: AND STILL ON THE PHONE AS WELL. >> CALLER: AND THIS IS JOHN. >> WE STILL HAVE A QUARUM. I JUST WANTED TO QUICKLY AT LEAST FLASH THE TITLE UP HERE OF WHAT WAS IN THE UPDATE. THESE WILL BE ONLINE. ONE OF THE PAPERS THAT LINDA MENTIONED IS IN HERE, BUT I KNOW THAT I COULDN'T DO JUSTICE TO THIS THE WAY TOM WOULD, AND I KNOW THAT THE COMMITTEE IS VERY INTERESTED IN WHAT HE USUALLY PULLS OUT FOR THE COMMITTEE DURING THE SCIENCE UPDATE AND HE WOULD HAVE LIKED TO HAVE BEEN HERE FOR THIS. SO I'LL JUST FLASH THIS UP HERE AND WE WILL PUT THIS UP ONLINE. SO THAT IT'S AVAILABLE. ALSO THIS TIME WE ARE PROVIDING ALL THE LINKS ONLINE TO THE PAPERS OR AT LEAST TO THE PUB MED ENTRY FOR EACH OF THESE PAPERS SO THAT YOU CAN LOOK AT IT YOURSELF. SO QUITE A LOT OF DIFFERENT ADVANCES. A GOOD VARIETY OF SOME AREAS WITHIN THE STRATEGIC PLAN. SO I KNOW THAT YOU WILL BE INTERESTED IN REVIEWING SOME OF THOSE PAPERS AND WE HAVE THE LINKS. >> CAN YOU JUST E-MAIL THOSE AS WELL AS PUTTING THEM UP BEYOND? JUST SEND THEM TO THE GROUP, JUST THE TITLE? >> CALLER: I'LL SEND YOU THE LINK. >> OKAY. >> CALLER: THAT WOULD BE BETTER THAN SENDING THE WHOLE PRESENTATION. >> GREAT. >> CALLER: IN FACT, THE LINK IS GOING TO BE UP SOON, SO WE CAN SEND THAT OUT. SOP I WANTED TO GIVE YOU VERY, VERY BRIEF UPDATE ON OUR STAFF. WE'VE HAD A NUMBER OF STAFF CHANGES IN RED. I'M JUST SHOWING WE HAVE A NUMBER OF PART-TIME DETAILEES WORKING IN THE OFFICE TO HELP US OUT OVER THE SUMMER AS WELL AS A COUPLE OF NEW STAFF MEMBERS WHO HAVE JOINED. SO WE HAVE WEN CHEN FROM THE NATIONAL INSTITUTE OF AGING IN THE OFFICE THIS SUMMER. SABINA KIM WHO HAS BEEN A SCIENCE POLICY INTERN. KIMBA CATOUR, OUR OPERATIONS COORDINATOR. STEPHANIE MOCK, WHO HAS BEEN A SCIENCE DETAILEE. WHO WILL BE JOINING US FULL-TIME IN AUGUST. FARRA NAILER AND CARRIE, WHO WAS OUR SCIENCE WRITER AND EDITOR AS WELL AS FAMILIAR FACE, MYSELF, NICOLE JONES AND PEREZ AND SARAH ROWS ROUCHE ROSE. I WANTED YOU TO BE FAMILIAR WITH THOSE YOU WILL BE INTERACTING WITH. NEXT WE WANTED TO GIVE A FEW MEMENTS ROUCHE MOMENTS TO JERRY DAWSON TO TALK ABOUT THE DSM PLANNING GROUP AND WHAT HAPPENED TO THEM IN THEIR MOST RECENT MEETING AND THIS IS A LIST OF THE PEOPLE, INCLUDING THOSE WHO ARE NOT MEMBERS OF THE SMC. >> CALLER: WE'VE BEEN ACTIVELY MEETING. WE'VE MET TWICE NOW SINCE THE LAST TIME THAT THIS GROUP MET, AND WE HAVE ADDED FOUR NEW MEMBERS TO ROUND OUT THE EXPERTISE. SO LORA CARPENTER, WHO IS AT THE UNIVERSITY OF SOUTH CAROLINA, WHO IS THE PERSON WHO IS PI ON THE AUTISM SPEAKS-FUNDED STUDY TO LOOK AT THE IMPACT OF THE DSM 5 ON PREVALENCE ESTIMATES USING A TOTAL POPULATION SAMPLING STRATEGY IN SOUTH CAROLINA. SO, AS WE RAISED ISSUES AROUND THE IMPACT OF THE DSM 5 ON PREVALENCE, HER VOICE WILL BE VERY HELPFUL. WE ALSO ADDED TO THE COMMITTEE DIANE PAUL, WHO IS THE DIRECTOR OF THE CLINICAL ISSUES IN SPEECH LANGUAGE PATHOLOGY FOR THE AMERICAN SPEECH LANGUAGE HEARING ASSOCIATION. AND WE ADDED HER BECAUSE OF LOTS OF QUESTIONS AROUND THE NEW DIAGNOSIS OF SOCIAL COMMUNICATION DISORDER. WE ALSO ADDED SUE SWEDO, WHO WAS THE FORMER CHAIR OF THE NEURO DEVELOPMENTAL DISORDERS WORKING GROUP FOR THE DSM 5 AND WE ADDED AMY WEATHERBY, ANOTHER EXPERT IN THE AREA OF EARLY LANGUAGE. AGAIN, BECAUSE OF A LOT OF DISCUSSION AROUND THE SOCIAL COMMUNICATION DISORDERS, DIAGNOSIS. WE DECIDED TO SET TWO SETS OF GOALS FOR THE PLANNING GROUP. ONE WAS TO ADDRESS QUESTIONS, CONCERNS AROUND THE IMPACT OF THE DSM 5 ON RESEARCH, AND WE HAVE HAD PRETTY RICH DISCUSSION ABOUT A WHOLE RANGE OF POTENTIAL IMPACTS, FROM THE IMPACT ON ASSESSING PREVALENCE OVER TIME, AS WELL AS THE NEED FOR TOOLS FOR RELIABLY IMPLEMENTING ASPECTS OF THE DSM 5, SUCH AS THE FUNCTIONAL IMPAIRMENT RATING SCALE, WHICH DOES NOT REALLY  TOOLS TO HAVE ANY SET OF IMPLEMENT THAT. AND THEN THE SECOND IS AROUND IMPACT ON POLICY, PRACTICE AND TRAINING. AND SO THAT ONE HAS TO DO WITH QUESTIONS AROUND THE IACK, MAKING RECOMMENDATIONS REGARDING HOW THE DIAGNOSIS OF SOCIAL COMMUNICATION DISORDER MIGHT TRANSLATE INTO TREATMENT RECOMMENDATIONS AND INSURANCE CODING. SO WITH RESPECT TO THOSE TWO GOALS, FOR THE RESEARCH GOALS, WE'VE DECIDED TO DRAFT A SET OF RECOMMENDATIONS THAT COULD BE CONSIDERED AS OBJECTIVES FOR THE IACC STRATEGIC PLAN. COLLEEN BOYLE HAS VOLUNTEERED TO DRAFT AND SUMMARIZE OUR DISCUSSION TO DATE ON THESE RESEARCH OBJECTIVES. AND THEN THE SECOND WOULD BE AN IACC, BASICALLY A POLICY KIND OF STATEMENT THAT WOULD PERTAIN TO POLICY AND PRACTICE AND INCLUDING RECOMMENDATIONS FOR TRAINING OF CLINICIANS, AND I HAVE VOLUNTEERED TO DRAFT THAT. AND WE WILL BE MEETING AGAIN IN AUGUST WITH OUR DEADLINE IS TO HAVE DRAFTS OF THESE BEFORE THAT CALL SO THAT WE CAN DISCUSS THEM ON THE CALL. AND THEN IN ADDITION, THE O ARK HAS ADDED OR WILL BE ADDING A WEB PAGE ON DSM 5, WILL BE. THE OARK WILL BE ADDING A WEB PAGE THAT PROVIDES INFORMATION ON THE DSM 5, ON THE IACC WEB PAGE. YES AND WE GOT PERMISSION TO BE ABLE TO PUBLISH THE CRITERIA ON OUR WEBSITE. >> THAT'S GREAT. >> SO THAT WAS REALLY NICE OF THEM TO GIVE US THAT PERMISSION. >> ANY QUESTIONS FOR JERRY? IF NOT, SUSAN AND OARK AND IACC BUSINESS UPDATE? >> AND WE WILL BE SCHEDULING OUR NEXT DSM 5 MEETING I BELIEVE SOMETIME AT THE END OF AUGUST. I SENT IT OUT TO FOLKS AND WE CAME ONE A DATE BASED IN FEW RESPONSES, ALTHOUGH WE NEED TO PROBABLY GET A FEW MORE RESPONSES TO MAKE SURE PEOPLE CAN MAKE IT, AND WE ARE WORKING ON SOME OTHER DATES UPCOMING. JUST WANTED TO UPDATE YOU QUICKLY. I SENT THIS OUT TO EVERYONE. THE LETTERS TO THE SECRETARY ON HEALTH COVERAGE FOR EARLY INTERVENTION WAS SENT OUT ON MARCH, 2013 AND THERE ARE A COUPLE OF KEY POINTS HERE THAT WE SHARED IN THE LAST MEETING AND THIS LETTER IS ON PUBLICATIONS, UNDER THAT TAB. WE RECEIVED A RESPONSE FROM THE SECRETARY ON JULY 2, TWOOERN AND IT'S IN YOUR PACKETS AND ALSO UP ON OUR WEBSITE AND IT WAS BASICALLY A THANK YOU LETTER SAYING THANKS FOR THE FOR THIS ADVICE AND THAT IT WOULD -- THAT THE SECRETARY ALREADY HAD SOME PLANS IN PLACE FOR HEALTH COVERAGE, BUT APPRECIATED THE GUIDANCE OF THE IACC AND SO YOU WILL WANT TO LOOK AT THAT LETTER IN DETAIL AND I THINK MOST OF YOU ALREADY HAVE CAUSE I SENT IT OUT EARLIER AND MEMBERS OF THE PUBLIC MAY ALSO WANT TO REVIEW THAT. I WANTED TO GO THROUGH THE STRATEGIC PLAN PROCESS FOR THIS FALL. FROM THE LAST COMMITTEE MEETING WE HAD THE QUESTION ONE PLANNING GROUP AND THE COMMITTEE TOGETHER TALK ABOUT A PLAN FOR HOW WE WERE GOING TO BE PREPARING FOR THIS NEXT UPDATE OF THE STRATEGIC PLAN. AND LYNN IS GIVING ME A VERY WORRIED LOOK, BUT MAYBE YOU MIGHT WANT TO LISTEN -- YOU ALREADY DISAGREE? I HAVEN'T EVEN GONE THROUGH THE SLIDES YET TO TALK ABOUT HOW WE ARE GOING TO DO THIS. WE HAVE DISCUSSED, WITHIN THE QUESTION ONE PLANNING GROUP AND THE FULL COMMITTEE, WHAT THE STEPS WOULD BE. AND SO I WANTED TO GO OVER THESE WITH YOU. AND IF THE COMMITTEE HAS ANY CONCERNS OR WANTS TO CHANGE ANY PART OF THIS PROCESS, YOU ARE WELCOME TO BRING UP YOUR THOUGHTS ABOUT HOW WE CAN MAKE THIS PROCESS WORK BEST FOR YOU. THE COMMITTEE WILL ASSESS PROGRESS MADE OVER THE PAST FIVE YEARS. ONE OF THE DIFFERENCES IN PREPARING THE NEXT STRATEGIC PLANHs A MORE COMPREHENSIVE REVIEW UPDATE AND NOT JUST LOOKING BACK OVER ONE OR TWO YEARS BUT ACTUALLY OVER THE PAST FIVE AND LOOKING AT PROJECTS THAT HAVE BEEN FUNDED, PROGRAM AND FUNDING. BIOMEDICAL AND SERVICES RESEARCH PROGRESS, REMAINING GAPS, NEW OPPORTUNITIES, OUTCOMES AND IMPACTS, WHEREVER THAT IS POSSIBLE, AND POSSIBLY LOOKING AT THE BARRIERS TO PROGRESS AND POTENTIAL SOLUTIONS TO THAT. SO THE PLAN THAT WAS DISCUSSED PROBABLY A LITTLE BIT MORE LOOSELY IN THE PREVIOUS COMMITTEE MEETING BUT I TRIED TO PUT IT OUT INTO CLEARER BULLETS. BUT IF YOU HAVE OTHER THOUGHTS, YOU ARE FREE TO GIVE US SOME GUIDANCE ON THIS, THAT THE COMMITTEE WILL ASSEMBLE SEVEN PLANNING GROUPS, ONE FOR EACH OF THE SEVEN STRATEGIC PLANNED QUESTIONS. THAT THE PLANNING GROUPS WILL BE COMPOSED OF IACC MEMBERS, EXTERNAL EXPERTS AND COMMUNITY STAKEHOLDERS AND WE WILL START WITH THE 2012 PLANNING GROUP MEMBERS AND ALLOW YOU ALL DECIDE IF YOU WANT TO CHANGE GROUPS THIS YEAR AND BE A PART OF A DIFFERENT GROUP AND ALSO TO MAKE ANY ADJUSTMENTS NEEDED IN TERMS OF THE EXTERNAL EXPERTS AND COMMUNITY STAKEHOLD THAT'SERS THAT YOU'D LIKE TO HAVE TAKE PART AND THAT WE WOULD BEGIN ASSEMBLING THE PLANNING GROUPS THIS MONTH AND TRYING TO GET THAT IN PLACE SO THAT WE'RE READY FOR THE WORK IN THE FALL. SO IN TERMS OF THE WORK THAT WILL BE DONE IT, YOU'LL HAVE A DATA REVIEW AND FROM THE QUESTION ONE PLANNING GROUP, THE UNDERSTANDING THAT OUR GROUP HAD, THE OARK, WAS THAT THE PLANNING GROUPS WOULD LIKE TO REVIEW DATA FROM THE PORTFOLIO ANALYSES FROM 2008 THROUGH 2012 AND SO THE 2011 AND 2012 PORTFOLIO ANALYSIS ARE CURRENTLY UNDER WAY BUT WE HAVE THE DATA ALREADY FOR 2008 TO 2010. THERE WAS A REQUEST FOR TABLES, FUNDING CHARTS, FUNDING DISTRIBUTION FOR QUESTION FOR EACH YEAR, LISTING OF ALL PROJECTS FOR EACH OBJECTIVE FOR EACH YEAR. AND SO OUR OFFICE HAS BEEN VERY BUSY PROVIDING -- PREPARING ALL OF THESE DOCUMENTS FOR THE COMMITTEE, AND SO WE'VE MADE TREMENDOUS PROGRESS IN GETTING ALL OF THOSE TOGETHER. AND WE'RE CURRENTLY WORKING ON THE 2011 AND 2012 DIFFERENT PRODUCTS. BUT WE HAVE MANY OF THOSE THINGS CLOSE TO BEING FINISHED. AND WE WILL PLAN TO HAVE A MEETING OF THE QUESTION ONE PLANNING GROUP BY PHONE TO REVIEW THE QUESTION 1 GROUP OF THESE DOCUMENTS TO SEE IF THERE ARE ANY OTHER DOCUMENTS THAT YOU WANT. IF YOU WANT US TO MAKE ANY REVISIONS TO ANYTHING THAT WE HAVE THERE. AND ONCE YOU'VE APPROVED A SET EV DOCUMENTS, WE'LL MAKE SURE THE SAME TYPE OF DOCUMENTS ARE AVAILABLE FOR ALL THE PLANNING GROUPS AND THE PLANNING GROUPS WILL ALSO HAVE ACCESS TO OTHER SOURCES, INCLUDING A SUMMARY OF ADVANCES, THE STRATEGIC PLAN UPDATES, PUBLICATIONS, ANALYSES, THE COMBATTING AUTISM ACT REPORTS CONGRESS AND ANY OTHER DOCUMENTS THAT THE PLANNING GROUP WOULD REQUEST, FOR US TO MAKE AVAILABLE. INVITED EXPERTS AND COMMUNITY STAKEHOLDERS WILL SHARE INPUTS ON PROGRESS, GAPS AND OPPORTUNITIES, OUTCOMES AND BARRIERS AND SOO THE PROCESS THAT WE ARE PROPOSING WOULD BE TO HOLD TWO TO THREE PHONE MEETINGS PER PLANNING GROUP IN SEPTEMBER AND OCTOBER AND IN OCTOBER THAT THE PLANNING GROUPS WOULD BEGIN SYNTHESIZING INFORMATION INTO DRAFT UPDATES, INCLUDING NEW OBJECTIVES AND ASSESSMENT OF COMPLETED OBJECTIVES AND PRIORITIZATION, WHICH ARE THE THREE AREAS THAT THE OARK HEARD FROM YOU ALL AT THE LAST MEETING THAT YOU WOULD LIKE TO BE ABLE TO PRIORITIZE OBJECTIVES MORE BUT YOU'D ALSO LIKE TO CREATE NEW OBJECTIVES OR DETERMINE MAYBE SOME OBJECTIVES THAT YOU FEEL HAVE BEEN COMPLETED. THE SUBCOMMITTEES WOULD REVIEW THE -- DRAFTS IN NOVEMBER AND REVIEW AND PLAN THE UPDATE BY DECEMBER 1, 2013, WHICH IS OUR DEADLINE GIVEN TO US BY CONGRESS. SO THIS IS THE PROCESS THAT WE HAVE LAID OUT TO TRY TO GET SOME STRUCTURE TO THIS. BUT IF THE COMMITTEE HAS ANY FEEDBACK, ANY SUGGESTIONS OR SOMETHING THAT NEEDS TO BE ADJUSTED, I'D LIKE TO HEAR THAT FEEDBACK SO THAT WE CAN GET IT ADJUSTED TO THE WAY YOU NEED IT TO GET YOUR WORK DONE THIS FALL. AND WE'LL DO THE BEST WE CAN TO FACILITATE YOU. SO DO YOU HAVE ANY COMMENTS? OR QUESTIONS? WALTER? >> WHAT'S THE CONTEXT OF THE OBJECTIVE PROGRESS? >> THE OBJECTIVE PROGRESS TABLE IS SORT OF -- IT'S BASICALLY WE CALLED IT APPENDIX A AND THE PORTFOLIO ANALYSIS. IT'S THE TABLE THAT HAS EACH OBJECTIVE AND THEN IT HAS A STOP LIGHT CHART BASICALLY, A DASHBOARD-TYPE RED LIGHT, GREEN LIGHT, YELLOW NIGHT TO LIGHT TO INDICATE BASED ON THE LEVELS OF FUNDING. SO THAT'S WHAT WE HAVE. IN TERMS OF THE MORE QUALITATIVE ANALYSIS, THAT WOULD COME FROM THE INVITED EXPERTS AND COMMUNITY STAKEHOLDERS INTERACTING WITH THE COMMUNITY TO GIVE YOU MORE INFORMATION ABOUT THE FEEL AND THE COMMUNITY ABOUT PROGRESS, THE FEEL IN THE SCIENTIFIC COMMUNITY ABOUT SCIENTIFIC PROGRESS. BUT THE OARK DATA WOULD REALLY BE QUANTITATIVE DATA ON PROJECTS THAT HAVE BEEN FUNDED AND FUNDING LEVELS. DENISE? >> IS THIS ON? KIND OF. >> USE THIS ONE. >> CAN YOU HEAR ME? >> YES. >> OKAY. SO I'D LIKE TO SUGGEST -- I DON'T KNOW IF THIS IS ALLOWED IN THIS REPORT, BUT HEARING THE FRUSTRATION OF PEOPLE ABOUT THIS COMMITTEE -- I'LL WONDERING IF THERE IS ANY OPPORTUNITY TO HAVE A SECTION ON WHAT THE COMMITTEE HAS DONE AND POTENTIALLY ACCOMPLISHED, EVEN THOUGH WE PROBABLY DON'T WANT TO GIVE OURSELVES GREEN LIGHT RED LIGHTS, GREEN LIGHTS OR YELLOW LIGHTS. BUT I THINK THAT THERE IS A SENSE SOMETIMES THAT THE COMMITTEE DOESN'T PROGRESS ON THINGS, AND WE MAY NOT GET TO THE SOLUTION, WHERE WE HAVE THE IDEAL OUTCOMES FOR EVERYBODY. BUT I THINK IF WE COULD DEMONSTRATE AND ARTICULATE WHAT THE COMMITTEE HAS DONE, I THINK IT WOULD BE VERY HELPFUL. WE DO HAVE PLANS FOR THE COMBATTING AUTISM REPORT TO CONGRESS DUE THIS FALL AND THAT HAS AN ENTIRE SECTION ON THE IACC THAT IS PRETTY DETAILED, AND THAT WILL HAVE MORE INFORMATION ABOUT WHAT THE COMMITTEE HAS DONE IN TERMS OF ACTIVITIES BECAUSE IT'S A NARRATIVE TYPE OF A REPORT. IF THE COMMITTEE WANTED TO DO SOME COLLAPSED VERSION THAT HAVE, WE COULD PUT SOMETHING INTO THE STRATEGIC PLAN ITSELF. THAT IS PROBABLY ON A SHORTER LEVEL BECAUSE I'M SURE WITH A STRATEGIC PLAN YOU WANT TO FOCUS MORE ON THE NEEDS AND OPPORTUNITIES AND OBJECTIVES. >> SHOULD WE E-MAIL YOU AS TO WHICH QUESTION GROUP WE WANT TO EITHER REMAIN OR MOVE TO? >> YOU CAN E-MAIL ME OR I ACTUALLY WILL SEND SOMETHING OUT AND YOU CAN RESPOND TO IT, IF THAT'S EASIER FOR YOU. WE'LL TRY TO GET ALL OF THESE SQUARED AWAY THIS MONTH SO THAT WE KNOW WHICH GROUPS EVERYONE WANTS TO BE ON AND CAN START GETTING THE RECOMMENDATIONS OF ANY CHANGES IN THE EXPERTS THAT YOU WOULD WANT, IF YOU NEED TO ADD EXPERTS, OR SOME EXPERTS MIGHT NOT BE AVAILABLE THIS FALL THAT YOU HAD LAST YEAR. SO WE'LL WANT TO GET THAT ALL ADJUSTED. >> ALISON? >> SO MY CONCERN ABOUT THIS PROCESS IS THAT IT LOOKS VERY SILOED, IN THAT EACH OF THE PLANNING GROUPS IS GOING TO MEET INDEPENDENTLY. AND THE FULL COMMITTEE WON'T ACTUALLY SEE MATERIALS FROM THE OTHER PLANNING GROUPS UNTIL IT'S ALMOST TOO LATE IN DECEMBER. LAST YEAR, THE PROCESS WAS TA THE PLANNING GROUPS WOULD WRITE THE DRAFT AND THEN ALL OF THE PLANNING GROUPS WOULD COME TOGETHER IN OCTOBER WITH ALL OF THE OUTSIDE EXPERTS AND STAKEHOLDERS TO DISCUSS ALL OF THE DRAFTS PRIOR TO SUBMITTING THEM TO THE FULL COMMITTEE. AND THAT MEETING WAS CANCELED BECAUSE OF HURRICANE SANDY. SO THAT NEVER HAPPENED. AND I THINK THAT WAS UNFORTUNATE THAT WE MISSED OUT ON THAT OPPORTUNITY TO HAVE THE EXPERT REVIEW OF ALL ALL OF THE SECTIONS. SO I'M WONDERING IF IT'S POSSIBLE TO ADD THAT IN THIS YEAR AND HAVE A MEETING IN MAYBE EARLY OCTOBER, WHERE WE BRING ALL OF THE GROUPS TOGETHER TO HAVE INPUT INTO THE DRAFT AND THEN IN -- AT OUR MEETING, OUR SCHEDULED MEETING AT THE END OF OCTOBER PRESENT IT TO THE COMMITTEE, WHERE IT'S NOT TOO LATE TO ACTUALLY MAKE CHANGES? I GUESS IF YOU HAVE ALL OF THE PLANNING GROUPS TOGETHER, YOU HAVE THE FULL COMMITTEE PRETTY MUCH, SO THAT WOULD ESSENTIALLY -- >> EVERY MEMBER OF THE IACC -- >> NOT EVERYONE. BUT IF YOU HAVE MORE THAN A QUARUM OF THE COMMITTEE, IT'S THE COMMITTEE, SO YOU WOULD HAVE PRETTY MUCH, A LEAST A QUARUM BY THE TIME YOU DID THAT SO THAT WOULD BE A FULL COMMITTEE MEETING. >> I KNOW THAT LAST YEAR WE HAD ISSUES OF THE CHAPTER FIVE PLANNING GROUP WAS WORKING ON SOME OF THE SAME ISSUES ASC$Ž CHAPTERATQ0V1E0S10=50 >> SO BASICALLY I DON'T KNOW IF WE'D WANT TO SPLIT IT INTO ANY SEPARATE LITTLE SUBGROUPS, THAT WE COULD HAVE BASICALLY EVERYBODY THAT WANTS TO BE INVOLVED IN REVIEWING DRAFTS TOGETHER AT THAT MEETING. >> I THINK THE KEY, THOUGH, IS FOR EACH PLANNING GROUP TO COME TO THAT MEETING WITH A DRAFT SO THAT YOU'RE NOT STARTING FROM GROUND ZERO. THAT DEFINITELY WAS A KEY LEARNING FROM THE 2009 MEETING. >> AND SO OCTOBER 29TH IS ACTUALLY A GOOD DATE FOR THAT, TOO, BECAUSE YOU WOULD HAVE ENOUGH TIME TO GET A DRAFT TOGETHER TO BE REVIEWED BY THAT TIME. >> SUSAN, I HAVE A 5:00 TAXI PICKUP AND I SEE WE'VE LOST A LOT OF MEMBERS. IS THERE ANYTHING WE NEED TO VOTE ON BEFORE I LEAVE? >> WE WERE GOING TO GO THROUGH QUICKLY THE SERVICES RESEARCH COMMITTEE AND THE PLANNED PROJECT JUST TO NAENTHS LETTER TO THE SECRETARY WAS COMPLETED. THERE WAS A POSSIBLE LETTER TO THE SECRETARY REGARDING DIFFICULT SERVICES. THIS IS JUST AN UPDATE. THE GROUP IS GOING TO MEET SEPARATELY. THERE IS AN ADULT SERVICES PROJECT THAT THE SUBCOMMITTEE WANTS TO LOOK AT. OARK HAS PREPARED A LIST OF TOOL KITS ON ADULTS AND CHILDREN AND ALL THE OTHER ISSUES THAT THE COMMITTEE ASKED FOR. AND SO WE WILL BE PROVIDING THAT TO THE SUBCOMMITTEE TO REVIEW AND THEN TRY TO DECIDE WHAT DIRECTION YOU WANT TO GO IN FOR YOUR ADULT SERVICES PROJECT. YOU ALSO WOULD HAVE A CHANCE TO TALK ABOUT A HEALTH DISPARITIES PROJECT, IF YOU WANT TO CONTINUE TO WORK ON THAT. AND NOW WE'VE ALSO ADDED WANDERING AS A SPECIAL MEETING, SO SERVICES, RESEARCH AND POLICY SUBCOMMITTEE WILL HAVE A NUMBER OF THINGS TO DISCUSS AT THEIR NEXT MEETING AND WE'RE TRYING TO SCHEDULE THAT. >> [INAUDIBLE]. >> SERVICES, RESEARCH AND POLICY -- SO YOU MIGHT HAVE POTENTIAL DATES FOR WHEN THAT -- IS THAT A PHONE MEETING? >> A PHONE MEETING IS SO I'VE SPOKEN WITH DENISE AND DAVID AND THEY BOTH DON'T HAVE AVAILABILITY UNTIL THE END OF AUGUST. SO WE WOULD NEED TO SEND OUT A MEETING PLANNING P DOODLE MESSAGE TO YOU ALL TO TRY TO GET A DATE FOR THAT. BUT THESE DIFFERENT TOPICS AS WELL AS WANDERING THEN WOULD BE ON THE LIST FOR THAT GROUP. >> I WAS WONDERING IF I COULD ADD A COMMENT ABOUT THE LETTER FROM THE SECRETARY AND I'M HOPING THAT IT COULD BE USED NATIONWIDE HOPEFULLY OR OTHER STATES WOULD TAKE UP THAT IN MINNESOTA. BECAUSE OF THE LETTER THAT WE WROTE, WESTERN ABLE TO ADVOCATE WITH THE GOVERNOR AND THE STATE LEGISLATOR AND THEY PUT IN -- BECAUSE USUALLY YOU HEAR THE PRIVATE INSURANCE FIGHT. SO WE WERE ABLE TO GET $12 MILLION FOR PUBLIC INSURANCE FOR CHILDREN WHO HAVE AUTISM NOT ONLY FOR ABA BUT DEVELOPMENTAL AND BEHAVIORAL THERAPY AND IT GOES UP TO $25 MILLION EVERY TWO YEARS. SO I WANTED TO ADD THAT. HOPEFULLY FROM NOW ON WE CAN ADVOCATE BOTH DEVELOPMENTAL AND BEHAVIOR AND ALSO PUBLIC AND PRIVATE AT THE SAME TIME. >> THANKS. LYNN? >> YEAH. BACK AROUND FROM THE DISCUSSION THIS MORNING ON COMORBIDIES WITH THE AMERICAN ACADEMY OF PEDIATRICS. I HAD MADE A SUGGESTION AT THAT TIME TO ESTABLISH SOME TYPE OF SUBCOMMITTEE TO WORK ON MEDICAL ISSUES AND FROM WHAT I'M HEARING FROM THE LAST DISCUSSION IS THAT WE DON'T HAVE STAFF TO BE ABLE TO ADD ANOTHER SUBCOMMITTEE. SO I AM WONDERING WITH IS THIS GOING TO TURN INTO A PLANNING GROUP BECAUSE I'M NOT FAMILIAR WITH THE STRUCTURE BUT IT SEEMS AS THOUGH WAY PLANNING GROUPATQ0V1E0S10=50 >> CALLER: AMANDA. >> CALLER: MATT. >> OKAY, SO WE HAVE 15. >> WOULD YOU LIKE TO VOTE TO FORM A PLANNING GROUP THAT WOULD BE UNDER THE BTR SUBCOMMITTEE? >> AND:^ THAT THAT PLANNING GROUP COULD FEED INTO THE UPDATE FOR THE TREATMENT PORTION OF THE PLA PLAN. >> [INAUDIBLE]. >> SO, LYNN, YOUR PROPOSAL IS TO HAVE A PLANNING GROUP OF THE BTR SUBCOMMITTEE. >> SIMILAR TO WHAT WE'VE BEEN DOING TO ADDRESS SOME OF THE ISSUES THE MEDICAL PROBLEMS -- RIGHT. >> I WILL SECOND LYNN'S MOTION FOR THAT. >> ALL IN FAVOR? >> AYE. >> IS THERE ANYONE OPPOSED? IS THERE ANYONE WHO ABTAINS? >> LET ME ASK ONE POINT OF CLARIFICATION, IF OTHER PEOPLE CAN TURN THEIR MIKES OFF. YOU MENTIONED CHILDHOOD P IN THAT. WERE YOU REFERRING TO CHILDREN WITH MEDICAL PROBLEMS, OR THE AUTISTIC POPULATION? >> A SECOND. >> THANK YOU. >> SUSAN, JUST TO BE CLEAR ON THE SAFETY, THE GROUP THAT WE JUST ESTABLISHED -- THAT THERE ALSO ABE SAFETY PLANNING GROUP, THE ONE THAT WE TALKED ABOUT EARLIER WITH THE WANDERING. >> THE WANDERING AND A ELOPEMENT WAS GOING TO BE COVERED BY THE RESEARCH AND POLICY COMMITTEE AND THERE WILL BE A SPECIAL MEETING. BUT NOW IT'S ON THE AGENDA FOR THAT GROUP TO TAKE THAT UP. >> OKAY, BECAUSE I WAS GOING TO SAY I DON'T KNOW IF EVERYBODY ON THAT COMMITTEE HAS AN APPETITE FOR THIS ISSUE AND IT WOULD BE NICE TO BRING IN OUTSIDE EXPERTS, LIKE THE GENTLEMAN WHO WAS JUST HERE FROM THE DEPARTMENT OF JUSTICE AND THE OTHER GENTLEMAN AND I DON'T KNOW WITHIN THE STRUCTURE OF AN IACC SUBCOMMITTEE CAN WE BRING IN OUTSIDE MEMBERS. >> WE CAN BRING IN SPEAKERS AND PEOPLE THAT CAN'T VOTE. BUT YOU CAN BRING IN OUTSIDE EXPERTS TO INFORM THE SUBCOMMITTEE. AND OTHER MEMBERS OF THE COMMITTEE WHO WANT TO COME TO THAT MEETING CAN. I'M TRYING TON CONFUSE THE COMMITTEE TOO MUCH BUT I HAVE BEEN STARTING TO SEND OUT SUBCOMMITTEE NOTICES AND PLANNING GROUP NOTICES EVEN TO PEOPLE WHO AREN'T ON THOSE GROUPS BECAUSE I NOTICE WITH THIS PARTICULAR AT A RATION OF THE COMMITTEE PEOPLE SEEM TO BE INTERESTED IN TRYING TO ATTEND MEETINGS THAT THEY'RE NOT OFFICIALLY MEMBERS OF. AND SO TRYING TO KEEP THAT STRAIGHT BUT ALSO GIVE YOU THE OPPORTUNITY TO SIT IN ON ANY MEETINGS THAT YOU ARE INTERESTED IN. AND OF COURSE, ALL OF OUR MEETINGS ARE OPEN TO THE PUBLIC. SO I BELIEVE THAT THE MOTION CARRIES. IT LOOKED LIKE WE HAD A UNANIMOUS VOTE TO HAVE A PLANNING GROUP ON COMORBIDIES. >> [INAUDIBLE]. >> YES. >> THANKS. >> I THINK WE CAN DO ROUND ROBIN. >> WE'D LIKE PEOPLE TO STAY IF YOU'RE WILLING. I THINK IT'S AWFULLY NICE TO BE ABLE TO WALK TALK ABOUT -- WHAT OUR ORGANIZATION HAS BEEN UP TO AND OTHER THINGS IN THE AUTISM WORLD THAT YOU WANT TO ALERT PEOPLE TO. THOSE OF YOU WHO CAN STAY A LITTLE LONGER, PLEASE DO. >> WE DID LEAVE A LITTLE BIT OF TIME FOR DISCUSSION, ALTHOUGH I THINK IT GOT EATEN UP WITH ALL THE PRESENTATIONS WE HAVE, WHICH WERE ALL VERY INFORMATIVE FOR THE COMMITTEE, SO IF ANYONE WOULD LIKE TO -- >> CAN I JUST SAY. THE MEETING SCHEDULED TO GO ON UNTIL 5:30, SO I THINK IT MIGHT BE A NICE IDEA IF OARK WERE TO INSTRUCT THE TRAVEL AGENCY THAT BOOKS PEOPLE'S TRAVEL TOLyÖ LET THEM KNOW THAT IF THEY'RE A MEMBER OF THE COMMITTEE, THEY'RE EXPECTED TO STAY FOR THE ENTIRE LENGTH OF THE MEETING. I THINK THIS IS SAD TO LOOK AROUND THIS TABLE AND EALL THE PEOPLE WHO ARE NOT HERE. >> SURE. WE CAN GIVE PEOPLE THAT GUIDANCE. I GUESS WE DO TELL THEM THE TIMING OF THE MEETING BUT WE ALSO CAN'T RESTRICT PEOPLE IF THEY HAVE PERSONAL COMMITMENTS. WE DO HOPE THAT PEOPLE CAN STAY FOR THE LENGTH OF THE MEETING AND WE'VE ALSO BEEN HAVING THE LONGER MEETINGS TO TRY TO ACCOMMODATE MORE OF WHAT THE COMMITTEE WANTS TO HEAR. >> IS THERE A REASON WHY WE CAN'T HAVE A TWO-DAY MEETING? IT'S LIKE WE HAVE SO MUCH THAT HAS TO BE DONE AND WE NEVER GET TO ACTUALLY DISCUSS THE PUBLIC COMMENTS. WE NEVER ACTUALLY GET TO DISCUSS WHAT WE HEARD EXCEPT IN LITTLE SNIPPETS HERE AND THERE. AND I JUST KIND OF ALWAYS FEEL LIKE I NEVER GOT ANYTHING DONE. I CAME HERE AND GOT A LOT OF INFORMATION, AND I GO HOME AND I DIGEST IT ALL BY MYSELF. AND WE CAN'T HAVE AN E-MAIL CONVERSATION BECAUSE THAT'S NOT CLIENT. SO I KIND OF THINK THAT WE NEED MORE THAN A ONE DAY MEETING. >> THERE ARE NEW CONFERENCE REGULATIONS THAT ARE EXTREMELY PROHIBITIVE. >> YOU DON'T HAVE TO TELL ME. I'M WITH THE DOD. >> TO GET A TWO-DAY MEETING, IT HAS TO BE PRETTY IMPORTANT. I'M NOT SAYING THAT AUTISM ISN'T IMPORTANT BUT IT HAS TO COME -- >> I HAVE TWO-DAY MEETINGS FOR PEER REVIEW AND PROGRAMATTIC REVIEW. WE'VE BEEN UNDERSTANDING NEATH THESE TRAVEL RESTRICTIONS FOR TWO YEARS NOW. >> OURS IS DIFFERENT FROM YOURS, AND I THINK IT WOULD BE -- MY GUESS WOULD BE IF WE WERE TO DO THAT, WE'D HAVE TO HAVE TWO-DAY MEETINGS INSTEAD OF TWO ONE DAY MEETINGS. >> SO WE COULD HAVE -- COULD START HAVING PHONE FOLLOWUP MEETINGS. IT'S JUST MORE AND MORE MEETINGS. AND FOR THE FALL I DIDN'T GO OVER THAT CAREFULLY, BUT WITH THE SEVEN WORKING GROUPS IF WE'RE HAVING TWO TO THREE CALLS, THAT IS SOMEWHERE AROUND 15 TO 20 SOMETHING CALLS THIS FALL. PLUS IF WE'RE HAVING SPECIAL MEETINGS, YOU CAN SEE THAT IT ADDS UP AND IT'S JUST CHALLENGING TO GET ALL THAT IN AND I KNOW YOU ALL HAVE VERY BUSY SCHEDULES AS WELL. WE'RE TRYING OUR BEST TO ACCOMMODATE. >> WELL, IS THERE A WAY TO DECREASE THE NUMBER OF PEOPLE WE'RE HEARING FROM? I KNOW WE WANT TO HEAR A LOT OF PEOPLE AND WE WANT TO DO THIS, BUT I STILL FEEL AS IF WE HEAR SO MUCH. AND NOTHING IS DONE WITH THE INFORMATION. I JUST FEEL KIND OF DISH FEEL LIKE IT'S FUTILE. I THINK THAT IF WE HAD LESS IN A DAY, THEN POSSIBLY WE WOULD GET MORE DONE ACTUALLY. I DON'T KNOW, MAYBE I'M THE ONLY ONE HERE. {}HE ROUCHE I FEEL LIKE FU LOOK AT THE AGENDA, THERE IS ALWAYS TIME BUDGETED. IT'S JUST THAT WE DON'T REALLY EVER STICK TO THE ALLOTTED TIME FOR EACH INDIVIDUAL PRESENTATION. EVEN TODAY WHEN WE GOT STARTED FIVE OR TEN MINUTES LATE AND IT JUST KIND OF SNOW FWRAULD THERE AND IT'S ALWAYS A LITTLE BIT AND I DON'T KNOW IF MAYBE IT'S THE PRESENTERS DON'T UNDERSTAND WHAT THEIR TIME CONSTRAINT IS OR IF IT'S -- I'M NOT SURE BUT IT'S ALWAYS. >> SO ISN'T PART OF THE ISSUE ALSO THAT LEGISLATION CHARGES US WITH A LOT OF RESPONSIBILITIES AND SO WE HAVE TO GET PUBLIC COMMENTS IN. THERE IS A LOT OF THINGS THAT HAVE TO HAPPEN IN THAT ONE DAY AND WE HAVE TO HANDLE IT ALL. I DO AGREE THAT MAYBE WE COULD KEEP TABS A LITTLE BIT BETTER ON TIME BECAUSE SOMETIMES WE'RE BETTER IN SOME PARTS OF THE MEETING BUT OTHER PARTS WE MAY WANT TO HAVE MORE UNIFORM STANDING REQUEST SLIGHT RELAXATION. BUT WHAT HAPPENS IS WE GO OVER THERE AND WE TRY TO PICK UP AND END UP LOSING BREAKS, WHICH IS IT'S NICE TO HAVE A FIVE-MINUTE INTREEK I DON'T MISS THINGS AND KEEP MY BRAIN FLOWING IN THE MIDDLE DURING AN EIGHT-HOUR MEETING. IF WE COULD MAYBE TRY TO KEEP ON TASK, WE GIVE PEOPLE FOUR MINUTES AND STICK TO IT AND USE THAT BETTER I FEEL LIKE PEOPLE GO PAST THE LIGHTS AND THE LIGHTS DON'T HAVE ANY MUCH MEANING ANYMORE. >> WE COULD TRY FLASH CARDS. I THINK THAT EVERY ONE OF THESE ISSUES IS SO IMPORTANT TO PEOPLE AND EVERYONE FEELS LIKE THEIR ISSUE NEEDS A LITTLE MORE TIME AND THEN THE COMMITTEE IS SO INTERESTED YOU WANT TO ASK A LOT OF QUESTIONS. AND PRETTY SOON THE TIME DOES GET AWAY. AND WE DO PUT ON THINGS ON THE AGENDA THAT THE COMMITTEE HAS REQUESTED AND SO FORTH AND WE'RE TRYING TO ACCOMMODATE THE WISHES OF THE VARIOUS MEMBERS OF THE COMMITTEE IN REPRESENTING VARIOUS TOPICS. SO IT'S CHALLENGING. WE COULD CUT DOWN ON PRESENTATION, BUT THEN THOSE WHO ASKED FOR PRESENTATIONS MIGHT HAVE TO REALIZE THAT WE MIGHT NOT GET TO THE PRESENTATION. YOU WOULD LIKE TO HAVE BECAUSE WE ARE CUTTING IT DOWN. SO THAT'S SOMETHING THE COMMITTEE MIGHT HAVE TO DECIDE AS A WHOLE. >> I REALLY THINK THIS IS ABOUT MEETING MANAGEMENT. I DO WORK IN UNCSCO, AND IF YOU HAVE FOUR MINUTES TO SPEAK, YOU'RE OFF AT FOUR MINUTES. IT'S AS SIMPLE AS THAT. THERE IS A UNIFORM RUDENESS. [LAUGHTER] THERE IS A RELIABLE, CONSISTENT THAT WHEN YOU GET TO YOUR TIME, THEY PLAY MUSIC SO LOUD YOU COULDN'T EVEN THINK OF SPEAKING. AND YOU KNOW WHAT? EVERYONE ADHERES TO THEIR TIME AS A RESULT. BUT I THINK THAT IT'S REASONABLE TO SET A STANDARD FOR AN AMOUNT OF TIME FOR SOMEONE TO SPEAK, IT'S THE COMMITTEE, IT'S PRESENTERS, IT'S THE PUBLIC, AND SIMPLY STICK TO IT. AND YOU JUST HAVE A DESIGNATED SOB THAT SITS IN THE FRONT THAT TAKES CARE OF IT. IT'S AS SIMPLE AS THAT. >> A CULTURAL CHANGE. IT WOULDN'T BE THE SPEAKERS. IT WOULD BE THE COMMITTEE. CAN I SEE A SHOW OF HANDS SORT OF ON TIME O POSED TO SORT OF THE WAY WE HAVE BEEN DOING IT, WHICH IS A LITTLE BIT SQUISHIER? HOW MANY FOLKS WOULD BE FOR THE MORE DRACONIAN KIND OF? HOW MANY PEOPLE WOULD PREFER THE CURRENT TRYING TO THREAD THE NEEDLE AND BEING SOMEWHAT MORE LENIENT? >> YOU CAN BLAME ME, IT'S FINE. WE'RE USED TO IT. >> ON THE PHONE? >> CALLER: THIS IS LINDA. I THINK THAT WE DO NEED TO STICK TO TIMES. I THINK WE SET TIMES THAT MAKE SENSE AND LET'S HOLD TO THEM. AND IF THERE IS ADDITIONAL INFORMATION THAT PEOPLE WANT TO COMMUNICATE, WE SHOULD ALWAYS AT THE END OF THE DAY HAVE SOME KIND OF TIME TO BRING ISSUES BACK. BUT THERE ARE MANY, MANY MEETINGS WHERE PEOPLE STICK TO THE TIME AND I DO THINK THAT WE HAVE TO LET PEOPLE KNOW AND THEY WILL RESPECT IT. >> WE CAN TRY FLASH CARDS NEXT TIME. THEY TEND TO BE A LITTLE BIT MORE EFFECTIVE, ALTHOUGH -- AND IT IS A LITTLE BIT DIFFICULT TO INTERRUPT PEOPLE WHO ARE TALKING ABOUT ISSUES THAT ARE SO IMPORTANT TO THEM. BUT I THINK THAT IF THE COMMITTEE IS FEELING THAT WAY, WE CAN CERTAINLY TRY TO DO THAT. >> SUSAN AND I WILL TRANSMIT THIS MESSAGE TO TOM. >> ALSO, I THINK THE ISSUE IS THAT WHEN YOU LOOK AT THE AGENDA, TYPICALLY THE IACC BUSINESS IS AT THE VERY END OF THE DAY AND THAT'S WHAT GETS CUT. AND SO THERE IS IMPORTANT THINGS THAT COME UP DURING THE DAY THAT WE'RE TOLD WE WILL DISCUSS THAT DURING THE DAY AND THEN IT'S CONSTANTLY SHORT AND WE DON'T GET TO REALLY WORK TOGETHER AS A COMMITTEE. AND I THINK IT MAKES US DYSFUNCTIONAL AND I KNOW I PERSONALLY FEEL VERY FRUSTRATED. I THINK THE OTHER PROBLEM IS WE HAVE A DISEASE THAT WE'RE TRYING TO ADDRESS THAT AFFECTS ONE IN EVERY 50 CHILDREN AND WE DON'T HAVE THE RESOURCES ON THIS COMMITTEE TO DO THIS. WE NEED A ROUND THE CLOCK, FULL-TIME STAFF. TO THINK THAT THIS COMMITTEE WITH PEOPLE WHO CHAIR INSTITUTES CAN DEDICATE THEIR TIME TO THIS ISSUE WITH FOUR OR SIX MEETINGS A YEAR, JUST IS VERY IMPRACTICAL. >> IN TERMS OF THE TIMING, I HAVE HEARD THAT FEEDBACK ABOUT WANTING TO DO BUSINESS EARLIER IN THE DAY. HOWEVER, WITH THE SPEAKERS, I ALWAYS GET SPEAKERS WHO WANT TO HAVE THEIR TALKS IN THE MORNING SO THAT OR IN THE EARLY AFTERNOON BECAUSE THEY WANT TO GET OUT OF THE MEETING AND BE ABLE TO FLY HOME. AND IF WE WANT TO SECURE THOSE SPEAKERS, THAT'S WHAT I'VE HAD TO DO TO ACCOMMODATE GETTING THE SPEAKERS THAT YOU WANT TO HAVE COME TO THE MEETING. >> THIS IS LAURA CAVANAUGH. IS THERE ANOTHER OPTION WHERE WE COULD HAVE SOME OF THE OUTSIDE SPEAKERS PRESENT VIA WEBINAR AND THEN DO FOLLOWUP IN-PERSON MEETINGS WHERE WE CAN HAVE MORE COMMITTEE WORK ACCOMPLISHED? >> WE COULD DO THAT. AGAIN, IT'S MORE MEETINGS, TALKING ABOUT ADDING ON TO THE NUMBER OF MEETINGS. BUT WE COULD HAVE INTERIM MEETINGS IN BETWEEN MEETINGS OR HAVE -- >> I THINK THE POINT -- WAS THE POINT THAT YOU ACTUALLY COULD HAVE SOME OF THE SPEAKERS WHO ONLY WANT TO BE THERE TO GIVE THEIR TALK DO THAT VIA A WEBINAR AS PART OF A MEETING? >> I'M THINKING YOU COULD HAVE A TWO-HOUR WEBINAR THAT WOULD EITHER PROCEED ROUCHE PRECEDE OR FOLLOW THE MEETING BUT LEAVE THE TIME WHEN WE'RE TOGETHER IN PERSON FOR MORE DISCUSSION. >> I'M GOING TO MAKE A COMMENT. I FELT LIKE TODAY'S MEETING WAS FANTASTIC IN TERMS OF THE CONTENT. IT REALLY ADDRESSED SITTING HERE FOR A YEAR, I WOULD LEAVE EVERY MEETING VERY FRUSTRATED. AFTER HAVING READ ALL THE PLIC COMMENTS, WRITTEN AND ORAL AND NOT HAVING ANY WAY TO COMMENT OR GIVE FEEDBACK OR DO SOMETHING ABOUT IT. I FELT LIKE TODAY'S MEETING ADDRESSED A LOT OF THE FRUSTRATION THAT THE PUBLIC HAS BEEN VOICING FOR YEARS, I THINK. SO THIS WAS A GOOD START, AND I WOULD LIKE TO SEE MORE OF THIS. I THINK THAT JUST THE NATURE OF THE MULTIDISCIPLINARY NATURE OF THIS DISORDER, I THINK YOU ARE GOING TO HAVE A LOT OF DIFFERENT OPINIONS AND SPEAKERS. AND SO I DON'T WANT TO TAKE AWAY FROM THAT. I WANT TO GO PACK TO WHAT TOM HAD MENTIONED EARLIER ABOUT HOW DO WE ADDRESS THE COMMENT SECTION? AND WHAT IDEAS PEOPLE HAVE BECAUSE I THINK THAT HAS ALWAYS LEFT ME VERY FEELING -- FEELING VERY INEFFECTULE. AND LEAVE HERE FEELING YUCKY. BECAUSE PEOPLE HAVE SPENT A LOT OF TIME AND EFFORT AND CLEARLY VERY VESTED AND PASSIONATE ABOUT COMING HERE AND HAVING A THREE-MINUTE VOICE. AND WE'RE SO FORTUNATE TO HAVE MORE THAN THREE MINUTES. SO I'D LIKE SOME SUGGESTIONS. ONE THING I WAS THINKING IS WE, AFTER THE MEETING, YOU GIVE US MAYBE A WEEK TO COMMENT ON THOSE AND THEN OARK CAN GENERATE A RESPONSE TO THE QUESTIONS SO THAT THERE IS SOME CLOSURE TO PEOPLE'S QUESTIONS, IN THE BEST WAY THAT WE CAN. VERY OFTEN, THERE ARE QUESTIONS THAT THERE ARE NO ANSWERS BUT AT LEAST PEOPLE KNOW THEY'VE BEEN HEARD AND THAT WE ARE LOOKING INTO IT, THAT WE ARE PLANNING A SPEAKER SYMPOSIUM ON THIS IN SIX MONTHS OR SOMETHING SO THAT AT LEAST IT'S ADDRESSED IN SOME WAY. >> I DON'T THINK THAT OARK CAN TAKE THE RESPONSIBILITY TO RESPOND -- RESPOND. IF THE COMMITTEE WANTS TO GET TOGETHER AND DRAFT RESPONSES TO COMMENTS, THEY CAN, BUT THEN WE NEED TO SCHEDULE MEETINGS TO DO THAT. BUT IT'S NOT REALLY FOR OUR OFFICE TO PRESUME HOW THE COMMITTEE WOULD RESPOND. WE CAN'T BE THE VOICE OF THE COMMITTEE IN THAT SENSE BECAUSE IF IT'S THE COMMITTEE'S RESPONSE, THE COMMITTEE NEEDS TO DRAFT. >> I THINK WHAT SHE'S SUGGESTING, THAT IF THE COMMITTEE MEMBERS, AFTER THEY'VE REVIEWED THE COMMENTS, WANT TO SPECIFICALLY COMMENT AND SAY YES, THIS IS AN IMPORTANT THING AND WE'RE ALREADY LOOKING AT THIS IN THIS PARTICULAR OBJECTIVE OR IN SOME WAY RESPOND BACK. IT WOULDN'T BE SOMETHING THAT THE STAFF WOULD HAVE TO DRAFT BUT THAT THE COMMITTEE MEMBERS WOULD COULD DRAFT COMMITTEE COULD REVIEW AND APPROVE WHETHER OR NOT THOSE GO OUT. JUST LIKE WE APPROVE THE MINUTES. I FEEL THE SAME WAY AS YOU DO. I FEEL HORRIBLE SIXTH HERE WHEN PEOPLE ARE ASKING US DIRECT QUESTIONS TO DO SOMETHING, AND WE JUST DON'T EVEN RESPOND. >> IF THE COMMITTEE DECIDES THAT THEY WANT TO PUT TOGETHER RESPONSES, THEY CAN. IT'S JUST ON A PRACTICAL LEVEL YOU DO GET A LOT OF COMMENTS, SO YOU WOULD BE PICKING AND CHOOSING CERTAIN COMMENTS AND OTHERS TON RESPOND TO. IT CAN GET A LITTLE BIT TRICKY. >> THAT WAS GOING TO BE MY QUICK COMMENT IS I WOULD ONLY BE IN FAVOR THAT HAVE IF WE DIDN'T PICK -- WE'D HAVE TO BE MORE UNIFORM ON IT BECAUSE I DON'T THINK IT WOULD NECESSARILY BE FAVOR FAIR. EVERYONE CAN SUBMIT COMMENTS BECAUSE OF A FREQUENCY OF A TOPIC ONLY TO CERTAIN GROUPS TO BE RESPONDING TO. I THINK WE'D VAN OBLIGATION TO BE ADDRESSING THINGS ACROSS THE BOARD ON ALL THE DIFFERENT TOPICS THAT ARE BEING RAISED BY PEOPLE. OTHERWISE, IF WE RESPONDED TO ONLY CERTAIN PARTS, THE OTHER PEOPLE WOULD BE LIKE WHY AREN'T WE GETTING A RESPONSE, TOO,? BECAUSE THEY HAD THE SAME EQUAL PROCESS AND THERE IS NO RANKING OR HIERARCHY ON THEIR COMMENTS. EVERYONE'S EQUAL. >> IS THERE A WAY TO MAKE JUST ONE RESPONSE BACK THAT SORT OF SUMMARIZES? BECAUSE A LOT OF THE THINGS WE HEARD YOU COULD PUT INTO CATEGORIES TODAY. SO IF THERE WAS ONE SORT OF SUMMARY RESPONSE BACK FROM THE COMMITTEE. WE DO THAT NOW WHEN WE MAKE COMMENTS ON THE COMMENTS AND WE DON'T ADDRESS EVERYONE'S COMMENTS WHEN WE DO HAVE AN OPPORTUNITY TO ADDRESS THEM. BUT I JUST FEEL LIKE WE NEED TO DO SOMETHING, OTHERWISE IT JUST FALLS INTO A VOID, AND IT MAKES US FEEL UNPRODUCTIVE. >> THE PURPOSE OF PUBLIC COMMENTS IN A FEDERAL ADVISORY COMMITTEE IS TO INFORM THE COMMITTEE AS YOU Tj ABOUT ALL THE DIFFERENT PROJECTS YOU ARE DOING ANDH NECESSARILY THE PURPOSE TO HAVE TO RESPOND TO EACH INDIVIDUAL QUESTION, ALTHOUGH IF THE COMMITTEE WANTS TO RESPOND TO EACH INDIVIDUAL QUESTION, YOU CAN. BUT TYPICALLY, COMMITTEES TAKE THAT INTO ACCOUNT AND USE IT AS YOU'RE FORMING OBJECTIVES AND AS YOU'RE WRITING LETTERS TO THE SECRETARY, AS YOU'RE PLANNING WORKSHOPS. SO IN ALL OF YOUR ACTIVITIES, YOU ARE SUPPOSED TO BE REALLY TAKING THAT NEEB. AND I THINK THAT THE COMMITTEE REALLY IS DOING THAT. BUT FU FEEL THAT YOUmATQ0V1E0S10=50 WHEN WE'RE DISCUSSING AROUND THE TABLE, AND I SAY HERE IS A THOUGHT ABOUT THIS COMMENT. AND THE ENTIRE COMMITTEE RESPONDING TO A COMMENT. BY THE TIME WE WOULD TRY TO DO SOMETHING THAT, WE WOULD HAVE TO GO TO THE WHOLE COMMITTEE AND BECOME A WHOLE COMMITTEE -- I DON'T KNOW. >> EXACTLY. THE WHOLE COMMITTEE VERSUS VERBAL COMMENTS HERE. EACH PERSON CAN SAY HOW THEY'RE STEEL AND IT'S NOT REPRESENTING EVERYBODY ELSE ON THE COMMITTEE AND YOU ALSO HAVE COLLECTIB THOUGHT. YOU CAN BOUNCE YOUR IDEAS OFF EACH OTHER, AND BE ABLE TO FORM SOME COLLECTIVE THOUGHT. BUT I UNDERSTAND THE SENSE OF GIVING SOMEBODY BACK SOMETHING THAT'S MORE CONCRETE. >> CALLER: I ALSO THINK AT THE END OF THE DAY THAT MOST OF THE PEOPLE WHO COME TO MAKE COMMENTS AT THE COMMITTEE JUDGE OUR RESPONSE NOT BY IF WE SEND THEM A WRITTEN RESPONSE BUT BUT WHAT THE COMMITTEE DOES. I THINK AT THE END OF THE DAY PEOPLE ARE GOING TO BE MOVED BY WHAT WE SEND BACK TO THEM A WEEK LATER. THEY'RE GOING TO WANT TO SEE OVER THE NEXT YEAR THE IMPACT OF THE WORK IN TERMS OF SETTING PRIORITIES, TAKING AREAS OF INTERESTS AND THOSE KINDS OF THINGS, I THINK. >> AND THAT'S WHY I THINK TODAY'S MEETING WAS SO POWERFUL BECAUSE IT DID SEND A MESSAGE OUT TO THE COMMUNITY AS WELL. PERSONALLY I THINK THIS WAS THE BEST MEETING I'VE SAT IN. AND IT'S NOT ONLY WITH THE INFORMATION BUT IT'S ADDRESSING THE COMMON THEME I'VE BEEN HEARING FOR THE LAST TWO YEARS FROM PARENTS LIKE ME ABOUT COMORBIDIES AND SLEEP AND G.I. ISSUES AND THINGS LIKE THAT. THANK YOU. >> THANK YOU GUYS FOR SENDING THAT OUT. >> ANY LAST WORDS? WE STILL DO HAVE TWO MINUTES LEFT. >> COMORBIDIES AND PROGRAMS AND HAVING SOME DISCUSSION THERE RELATED TO AUTISM SPECIFICALLY. IS THAT -- WHAT'S THE STATUS OF THAT? >> I'M NOT SURE WHAT YOU ARE THINKING ABOUT SPECIFICALLY. >> [INAUDIBLE]. >> I THINK SO THAT FOLKS MET WITH TIM SHRIVER AND FOLKS WITH SPECIAL OLYMPICS TO TALK ABOUT THIS AND WE ARE, AS RECENTLY AS YESTERDAY, E-MAIL EXCHANGES BACK AND FORTH ABOUT COMING TOGETHER ON A CONFERENCE. IT'S STILL IN THE WORKS BUT THE MOST RECENT VERSION IS THE FOCUS ON MENTAL HEALTH COMOSHTIES, THAT THOSE ARE THE ONES THAT FOR VARIOUS REASONS, HAVE A FOCUS SO BROAD THAT THE MEETINGS WOULD PRESENT REHASHING OF STUFF THAT WERE DISCUSSED BEFORE. THERE NEED TO BE ACTIONS THROUGH RFAS. IT'S IN DISCUSSION. IT'S GOING BACK AND FORTH. P >> NOK> [IAOx LATE FALL OR EARLY SPRING PROBABLY. >> SHE ASKED ME A QUESTION ABOUT THE CAB. SO THERE WILL BE DISCUSSION ABOUT AUTISM. YOU SAID IT WOULD FOCUS ON MENTAL HEALTH. >> MENTAL HEALTH COMORBIDIES FOR THOSE WITH DEVELOPMENTAL DISABILITIES, WHICH WOULD INCLUDE AUTO. I BUT NOTHING LIKE SEIZURES AND AUTISM OR MEDICAL -- >> SPECIFICALLY ON AUTISM. IT WOULD BE ABOUT INTELLECTUAL DEVELOPMENT, DISABILITIES, WHICH WOULD INCLUDE AUTISM. >> ARE THE COMORBIDITY ISSUES JUST MENTAL HEALTH? >> YES. >> CALLER: SO ALAN, WHEN NIC HD COMES OUT, WE CAN CERTAINLY INFORM THE COMMITTEE SO THE COMMITTEE CAN BE AWARE OF WHEN THAT WAS HAPPENING AND PARTICIPATE F THEY WISH. >> WELL, I THINK THAT WE ARE COMING TO A CLOSE HERE. SO THANK YOU SO MUCH, ALAN, FOR HELPING OUT, AND THANK YOU TO THE FOLKS WHO STAYED. FOR THIS PORTION THAT WAS NOT A DECISION MAKING PART OF THE MEETING, BUT -- >> THANK YOU FOR A WONDERFUL DAY, BYE. >> THANK YOU. >> ALL RIGHT, BYE.