WELCOME TO MEMBERS OF OUR VIEWING AUDIENCE AND MEMBERS OF THE IACC AND ALTERNATES. TO THIS MEETING OF THE INTERAGENCY AUTISM COORDINATING COMMITTEE STRATEGIC PLAN WORKING GROUP. I'M GOING TO GIVE YOU SOME BACKGROUND ON WHAT WE ARE GOING TO BE DOING TODAY. I WILL START WITH MEETING LOGISTICS AND HOUSEKEEPING ITEMS TO REMIND PEOPLE WHO ARE IN ZOOM TO PLEASE KEEP YOUR MICROPHONES OFF UNLESS SPEAKING AND YOU ARE WELCOME TO TURN CAMERAS ON WHEN SPEAKING BUT YOU CAN LEAVE OFF IF YOU PREFER THAT. DURING THE DISCUSSION PLEASE GIVE YOUR COMMENTS BRIEFLY APPROXIMATELY ONE TO TWO MINUTES TO ENABLE OTHER MEMBERS TO HAVE A TURN SPEAKING. WE SHOULD HAVE PLENTY OF TIME OVER THE NEXT TWO AFTERNOONS FOR EVERYONE THAT IS IN THESE GROUPS TO BE ABLE TO MAKE A FEW COMMENTS. IF WE KEEP THEM BRIEF. FORGIVE ME IN ADVANCE IF I END UP INTERRUPTING IF ANY COMMENTS GO ON TOO LONG I MIGHT CUT IN TO TRY TO GET US BACK ON TRACK AND SO NOT TO BE RUDE BUT I WANTED TO MAKE SURE THAT EVERYONE HAS A CHANCE TO TALK SO PLEASE KEEP THAT IN MIND WE WANT TO GIVE EVERYONE A TURN FOR COMMITTEE MEMBERS THAT WOULD LIKE A COMMENT READ ALLOWED, WE ARE GOING TO HAVE SOMEONE FROM THE OR STAFF USING THE SCREEN NAME SEND COMMENTS HERE AND IF YOU WANT TO SEND THEM YOUR COMMENTS, THAT PERSON WHO IS MR. STEVEN ISAACSON FROM OUR TEAM, STEVEN WOULD YOU LIKE TO SAY HELLO? >> GOOD AFTERNOON, EVERYBODY. PLEASED TO BE HERE. >> STEVEN WILL BE HAPPY TO READ YOUR COMMENTS ALLOWED AND IF YOU HAVE A REALLY LONG COMMENT YOU MAY HAVE TO BREAK IT UP INTO TWO OR THREE PIECES. SO HE CAN RECEIVE THEM AND THEN HE WILL READ FOR YOU IF YOU WANT THAT. AND AS REMINDER BOTH TO AUDIENCE THAT IS LISTENING ON NIH VIDEOCAST AND TO MEMBERS OF THE COMMITTEE WE DO HAVE CLOSE CAPTIONING IN VIDEOCAST YOU CAN PRESS A BUTTON FOR CLOSE CAPTIONING AND IN ZOOM GO TO BOTTOM OF YOUR SCREEN AND CLICK CC LIVE TRANSCRIPT TO BE ABLE TO GET CLOSED CAPTIONING. NEXT, I WOULD LIKE TO SHARE A LITTLE BIT ABOUT PURPOSE OF THIS WORKING GROUP MEETING TODAY. SO AS YOU KNOW WE ARE WORKING HARD ON THE IACC STRATEGIC PLAN WHICH IS THE NUMBER ONE TASK OF THIS COMMITTEE. AS WE CONVENED LAST YEAR AND WE ARE STARTING TO WORK ON THE STRATEGIC PLAN. SO WE ARE GOING TO BE FOCUSING EXCLUSIVELY ON THE STRATEGIC PLAN AT THIS MEETING, OTHER REGULAR COMMITTEE BUSINESS WILL NOT BE DISCUSSED AT THIS MEETING SO WE WON'T HAVE SESSIONS LIKE PUBLIC COMMENT AND SOME OF THE OTHER SECTIONS THAT WE NORMALLY HAVE IN OUR REGULAR MEETINGS. ATTENDANCE AT THIS MEETING IS VOLUNTARY SO IT IS AN OPTIONAL MEETING AND NOT EVERYONE OF THE MEMBERS IS GOING TO BE HERE THOUGH WE HAD A LOT OF PEOPLE THAT DECIDED THEY WERE GOING TO BE HERE AND PERHAPS DIDN'T INTERFERE WITH SUMMER VACATION PLANS AND ARE GOING TO BE HERE. INSTEAD OF GOING AROUND HAVING EVERYONE INTRODUCE THEMSELVES I'M -- WE PREPARED A SLIDE WITH THE NAMES OF EVERYONE BECAUSE IT IS A REALLY BIG GROUP BUT WE HAVE REPRESENTATION FROM SEVERAL FEDERAL AGENCIES INCLUDING SAMHSA EPA NIDCD, NIH OFFICE OF DIRECTOR, ADMINISTRATION FOR CHILDREN AND FAMILIES, ADMINISTRATION FOR COMMUNITY LIVING NICHD, NINDS, AHRQ, HRSA, CDC, FDA, HUD CMS, NIDCD AND DEPARTMENT OF DEFENSE. THEN WE HAVE LARGE NUMBER OF PUBLIC MEMBERS ALSO WHO ARE SCHEDULED TO BE ON TODAY. THERE MAYBE A FEW PEOPLE JOINING LATE OR TUNING IN FOR PART OF THE MEETING WHICH IS FINE BUT WANT TO GIVE EVERYBODY A CHANCE WHO HAD TIME TO BE INVOLVED IN THIS MEETING. WE WILL COME BACK TO DISCUSS THE STRATEGIC PLAN MORE AT THE OCTOBER MEETING SO AT THAT POINT ALL MEMBERS WILL HAVE ANOTHER OPPORTUNITY. FOR OUR AGENDA TODAY WE HAVE TIME -- I WILL GIVE BACKGROUND ON STRATEGIC PLAN TO GET EVERYONE OBJECT SAME PAGE WHAT OUR GOAL IS THEN WE WILL HAVE TIME TO DISCUSS QUESTIONS ONE THROUGH FOUR OF THE STRATEGIC PLAN AND I HAVE A FEW DISCUSSION QUESTIONS PREPARED AND YOU CAN FEEL FREE TO RAISE YOUR HAND AND SHARE IF YOU WOULD LIKE TO SHARE SOME COMMENTS BASED ON THOSE DISCUSSION QUESTIONS. WE BUILT QUITE A BIT OF TIME INTO THE MEETING, SO THERE MAYBE A LITTLE BIT OF EXTRA TIME IF SO THEN I WILL ALLOW EXTRA TIME WITH ANYTHING THAT WE HAVE TIME FOR. SO I WANTED TO AGAIN REMIND US ALL GET US ALL ON THE SAME PAGE WHAT THE PURPOSE OF THE IACC STRATEGIC PLAN IS. THIS PLAN IS REQUIRED BY CONGRESS IN THE AUTISM CARES ACT OF 2019. IT SERVES AS A GUIDE THAT OUTLINES PRY YOUR THE IS AND DIRECTIONS FOR AUTISM RELATED EFFORTS ACROSS FEDERAL AGENCIES AND ALSO USED BY PRIVATE PARTNER ORGANIZATIONS. ONE OF THE MAIN WAYS THAT THE IACC PROVIDES ADVICE TO THE SECRETARY OF HEALTH AND HUMAN SERVICES WHICH IS PART OF THE MANDATE OF THE IACC IS THROUGH THE STRATEGIC PLAN AND THE RECOMMENDATIONS CONTAINED WITHIN THE PLAN. IT INCLUDES NUMBER OF WHAT HAVE BEEN CALLED OBJECTIVES IN THE PAST, I WILL BE SHARING WITH THE IACC IN OCTOBER, GOING TO BE SUGGESTING WE RENAME THEM RECOMMENDATIONS BECAUSE UNDER THE FEDERAL ADVISORY COMMITTEE ACT EACH OBJECTIVE IS A RECOMMENDATION TO THE SECRETARY AND IT MIGHT MAKE IT A LITTLE CLEARER FOR PEOPLE TO UNDERSTAND THAT. THESE OBJECTIVES ARE RECOMMENDATIONS ADDRESS RESEARCH SERVICES AND POLICY ACTIVITIES AND WE ALSO ARE REQUIRED TO PROVIDE A BUDGET RECOMMENDATION, THAT'S ALSO PART OF THE CARES ACT. SO THE PROCESS WE ARE USING TO CREATE THE STRATEGIC PLAN IS FIRST WE HAVE DONE A FEW THINGS TO SOLICIT PUBLIC INPUT. SO WE HAVE BEEN RECEIVING PUBLIC COMMENTS ON A REGULAR BASIS AT OUR MEETINGS AND I KNOW EVERYONE HEARD PUBLIC COMMENTS OR READ THEM. IF THEY WERE SUBMITTED AS WRITTEN COMMENTS. AND WE ALSO PUT OUT A SPECIAL REQUEST FOR INFORMATION OR INPUT FROM PUBLIC ON OUR STRATEGIC PLAN. ON WHAT THEY WOULD LIKE TO SEE IN THE STREAM PLAN. WE ALSO HAVE BEEN GATHERING INPUT FROM MEMBERS OF THE COMMITTEE AND WE SENT OUT A SURVEY THAT WAS USED TO PROVIDE SOME OF THE INPUT AND ALSO LISTENING TO Y'ALL DURING COMMITTEE MEETINGS. THE PROCESS WILL INVOLVE CONSENSUS, WE ARE ALL GOING TO BE COMING TOGETHER PUTTING IDEAS TOGETHER AND COMING INTO CONSENSUS ABOUT WHAT BELONGS IN THIS PLAN. WE WILL MAKE AN EFFORT TO RESOLVE ANY QUESTIONS CONCERNS AND CONFLICTS IN THIS PROCESS SO THAT BECOME UP WITH A PLAN THAT EVERYONE CAN AGREE ON. THEN THE FINAL DRAFT WILL BE REVIEWEDD BY THE FULL IACC, THIS IS JUST A WORKING GROUP MEETING WHERE WE CAN DISCUSS SOME IDEAS AND SHARE SOME INPUT THAT WOULD BE PUT INTO A DRAFT. THE FULL IACC WILL ACCEPT THE FINAL STRATEGIC PLAN BY MAJORITY VOTE. THE STRATEGIC PLAN ONCE PUBLISHED CAN BE USED BY FEDERAL AGENCIES AND OTHER COMMUNITY MEMBERS. IT IS MEANT TO BE A DOCUMENT THICKENS TRACK OF WHAT IS CHANGING -- KEEPS TRACK OF WHAT IS CHANGING IN THE FEEL AND HOW WE CONSTANTLY SHIFT DIRECTIONS BASED ON WHAT IS LEARNED, WHAT IS NEW, AND MAYBE NEW CHALLENGES AND EMERGING ISSUES THAT HAVE COME UP SO WE CAN KEEP IT RELEVANT. SO THE TIME LINE I'M ALSO GOING TO REVIEW WITH YOU FOR THE STRATEGIC PLAN IS CONVENED AS A COMMITTEE LAST YEAR, IN JULY 2021, WE STARTED TALKING ABOUT THE STRATEGIC PLAN SO WE INTRODUCED THIS PROCESS. AND IN OCTOBER WE DID REQUEST FOR -- REQUEST FOR INFORMATION FROM THE PUBLIC. THAT CLOSED IN NOVEMBER AND WE SHARED THE RESULTS WITH YOU IN JANUARY. IN NOVEMBER WE ISSUED A SURVEY TO MEMBERS OF THE COMMITTEE THAT CLOSED ON -- IN MARCH OF 2022 AND WE SHARED THE RESULTS OF THAT. IN OUR APRIL MEETING SO THOSE ARE DATA GATHERING ACTIVITIES WE HAVE DONE SO FAR. AS OF YESTERDAY WE HAVE PUBLISHED THE FIRST DRAFT OF STRATEGIC PLAN CHAPTERS ON THE IACC WEBSITE. AND THIS IS A FIRST DRAFT, THOSE WHO MAY HAVE HAD TIME TO BROWSE THROUGH CHAPTERS IF YOU SEE ANYTHING THAT YOU FEEL NEEDS TO CHANGE DON'T BE CONCERNED OVERLY MUCH, IT IS A FIRST DRAFT WE ARE GOING TO BE CONTINUING TO WORK ON THE DRAFTS AS WE HEAR MORE INPUT FROM Y'ALL. AT THIS JULY WORKING GROUP MEETING IACC MEMBERS ARE GOING TO HAVE A CHANCE TO PROVIDE THAT EPIPUT THEN WE WILL SEND YOU ANOTHER SURVEY YOU CAN COMPLETE BETWEEN JULY AND AUGUST THAT WILL GIVE A CHANCE TO LOOK CAREFULLY AT OTHER COMPONENTS WE HAVEN'T HIGHLIGHTED SO FAR INCLUDING THE MISSION AND VISION STATEMENT, THE CORE VALUES AND SOME OTHER PARTS OF THE STRATEGIC PLAN SO YOU WILL HAVE A CHANCE TO LOOK AT THOSE. OUR TEAM HAS TAKEN AN EFFORT TO REVISE BASED ON WHAT WE HAVE BEEN HEARING FROM YOU AS A COMMITTEE. IN EARLY OCTOBER WE WILL PROVIDE NEW DRAFTS OF STRATEGIC PLAN CHAPTERS ONLINE TO REVIEW AND THAT WILL BE AVAILABLE BEFORE OCTOBER 26TH MEETING. AT THE OCTOBER 26 MEETING WE WILL AGAIN DISCUSS THE STRATEGIC PLAN, IF IT IS IN A PLACE WHERE THE COMMITTEE FEELS THEY COULD APPROVE WITH SOME SMALL CHANGES WE WOULD LIKE TO APPROVE IT AND IF WE CANNOT WE WOULD SCHEDULE ANOTHER TIME TO MAKE LAST PASS OF THE PLAN BUT HOPE WE WILL FINISH IT WITHIN THIS CALENDAR YEAR HOPEFULLY OR AT THE LATEST BY JANUARY 2023. THE STRATEGIC PLAN IS USEFUL WHEN FINISH AND PUBLISHED AN CAN BE USED SO WE WANT TO GET IT OUT AS SOON AS WE CAN BUT TO MAKE SURE IT IS DONE THE WAY WE ALL FEEL GOOD ABOUT. SOME NOTES ABOUT THE STRATEGIC PLAN ITSELF. EACH IACC STRATEGIC PLAN CHAPTER PROVIDES AN OVERVIEW OF RELEVANT TOPICS. RECENT ADVANCES, CHANGES AND TRENDS IN THE FIELD ANDND REMAIN OPPORTUNITIES FOR RESEARCH SERVICES AND POLICY. AGAIN WHEN YOU LOOK AT THESE CHAPTERS, IT IS NOT A FULL LITERATURE REVIEW OF EVERYTHING IN THE ENTIRE FIELD. WE HAVE TO KEEP IT SOMEWHAT READABLE AND COMPACT. WE TRY TO PROVIDE HIGHLIGHTS OF THINGS THAT ARE REALLY SIGNIFICANT, THINGS THAT MAY HAVE CHANGED AND MIGHT INFLUENCE THE DIRECTION. OF FEDERAL AGENCIES OR ORGANIZATIONS THAT ARE WORKING ON AUTISM. THE PLAN ALSO PRESENTS DIVERSE PERSPECTIVES FROM THE COMMUNITY AND THIS COMMITTEE AND WE TRY TO PRESENT THAT IN A RESPECTFUL INCLUSIVE MANNER. THE STRATEGIC PLAN IS ADVISORY TO THE SECRETARY AND FEDERAL AGENCIES AND CAN BE USED TO GUIDE FEDERAL AGENCY EFFORTS SO I WILL PAUSE A MOMENT TO ALLOW FOR QUESTIONS IF ANYONE HAS ANY QUESTIONS ABOUT ANY OF THAT. AND IT IS MOSTLY REVIEW BUT I WANT TO MAKE SURE WE ARE ALL ON THE SAME PAGE AS WE ARE STILL A ONE YEAR COMMITTEE AT THIS POINT. SO NOT SEEING ANY RAISED HANDS SO I WILL KEEP MOVING. THE SEVEN QUESTION AREAS OF THE STRATEGIC PLAN THESE ARE ORGANIZED AROUND COMMUNITY BASED QUESTIONS SO WE HAVE SEVEN TOPICS QUESTION ONE IS SCREENING AND DIAGNOSIS. QUESTION TWO IS ON THE BIOLOGY OF AUTISM. QUESTION 3, GENETIC AND ENVIRONMENT A.M. FACTORS. QUESTION 4 ON INTERVENTIONS. QUESTION 5 ON SERVICES AND SUPPORTS. QUESTION 6 IS ON LIFE SPANISH SHOES. AND QUESTION 7 IS ON RESEARCH INFRASTRUCTURE AND PREVALENCE. SO ADDITIONAL SECTIONS OF THE PLAN INCLUDING NEW ONES ARE THAT THE NEW IACC STREAM PLAN WILL ALSO INCLUDE TWO CROSS CUTTING THEMES THAT ARE CONNECTED TO ALL SEVEN TOPICS. THE SEX AND GENDER SECTION WHICH WAS FOCUSED ON THERE FROM THE PREVIOUS STRATEGIC PLAN BUT FOCUSED ON WOMEN AND GIRLS AND THAT IS EXPANDED TO HAVE A FULLER UNDERSTANDING OF GENDER. A NEW SECTION ON PROMOTING EQUITY AND REDUCING DISPARITIES TO HIGHLIGHT THAT ISSUE. THERE IS ALSO A SECTION ON THE IMPACT OF COVID-19 ON THE AUTISM COMMUNITY AND RESEARCH SERVICES AND POLICY AND WHAT LESSONS WE HAVE LEARNED FROM THIS EXPERIENCE. THERE ALSO IS A SECTION ON DESCRIBING PROGRESS MADE ON PREVIOUS STRATEGIC PLAN OBJECTIVES AND A BUDGET RECOMMENDATION REQUIRED BY THE AUTISM CARES ACT. WE MADE AN EFFORT THROUGHOUT THE STRATEGIC PLAN TO INCLUDE THEMES OF ACCEPTANCE AND INCLUSION OF INDIVIDUALS OF THE AUTISM SPECTRUM AND THERE IS THE NEXT DRAFT INCLUDES REVISIONS FOR PLAIN LANGUAGE. IF WE LOOK AT THE DRAFTS ONLINE NOW, IF YOU FEEL LIKE YOU HAVE CONCERNS ABOUT PLAIN LANGUAGE OUR TEAM WILL GO BACK THROUGH ONCE WE HAVE THE CONTENT WORKED OUT AND TRY TO WORK ON THE PLAIN LANGUAGE ASPECT TO ENSURE THAT IT IS AS READSABLE AS POSSIBLE. WE ALSO CREATE SOME KIND OF EXECUTIVE SUMMARY OR SHORTER VERSION THAT CAN BE AN EASY READ VERSION. SO WITH THAT, I DON'T KNOW IF THERE'S QUESTIONS ABOUT THAT THAT I SHARED? WE WILL BE READY TO START IN ON QUESTION ONE, SO WE ARE A LITTLE AHEAD OF SCHEDULE, THAT MEANS WE MIGHT HAVE A FEW EXTRA MINUTES. THROUGHOUT TODAY TO BE ABLE TO TALK ABOUT SOME OF THESE AREAS. AS EACH CHAPTER HAS COMMUNITY ASSOCIATED QUESTION THAT CAPTURES THE THEME IN BRIEF AND OVERWOVERARCHING GOAL, THE QUES1 WAS TAKEN BY THE TEAM AND SHORTEN AND TRIED TO MAKE BRIEF AND EASY TO UNDERSTAND, HOW CAN WE IMPROVE IDENTIFICATION OF AUTISM? WITHIN THIS QUESTION IT COVERS SCREENING AND DIAGNOSIS RESEARCH TOOLS AND TECHNOLOGY EARLY SIGNS AND BIOMARKERS, DISPARITIES IN AUTISM SCREENING DIAGNOSIS ACCESS TO SCREENING DIAGNOSIS SERVICES, SYSTEMS NAVIGATION AND WORK FORCE NEEDS. AND IT TOUCHES ON ADULT DIAGNOSIS, THOUGH ELABORATED UPON MORE IN QUESTION 6. THE DISCUSSION QUESTIONS THAT I HAVE FOR YOU ARE ARE THERE ANY OTHER IMPORTANT TOPICS OR POINTS THAT NEED TO BE INCLUDED IN THIS SECTION? SO NOT NECESSARILY SAYING THE CHAPTER THAT IS ONLINE BECAUSE I KNOW YOU DIDN'T NECESSARILY HAVE TIME TO READ IT BUT I WANT YOU TO BRING OUT ANY REALLY IMPORTANT POINTS THAT YOU WANT TO SEE INCLUDED IN THIS CHAPTER AND IF YOU FEEL THERE HAVE BEEN RECENT SIGNIFICANT CHANGES IN THIS FIELD SINCE THE LAST STRATEGIC PLAN WAS ISSUED THAT WOULD IMPACT THE DIRECTION SO WE CAN MAKE SURE THAT WE ARE COMPLETELY UP TO DATE SO I'M GOING TO FIRST GO TO STEVEN AS HE HAS A COMMENT SHARED BY SOMEBODY WHO WOULD LIKE THEIR COMMENT READ SO STEVEN. >> THIS QUESTION IS FROM (INAUDIBLE) THE QUESTION HOW MUCH TIME WILL WE HAVE TO REVIEW THE OCTOBER DRAFT? >> YOU WILL BE RECEIVING THE OCTOBER DRAFT AT THE BEGINNING OF OCTOBER. THE MEETING IS ON THE 26TH. SO IT WILL BE COUPLE OF WEEKS, MAYBE THREE WEEKS OR SO, >> THANK YOU. >> YOU ARE WELCOME. >> I HAVE A QUESTION ON THIS ONE. IS IT WITHIN OUR WHEEL HOUSE OR APPROPRIATE IN ANY WAY TO TALK ABOUT WORK FORCE DEVELOPMENT AND TRAINING AS IT APPLIES TO PROVIDERS WHO WILL BE DOING DIAGNOSTICS, I KNOW THE AMERICAN DENTAL ASSOCIATION HAS MANDATED THAT WE DO PROVIDE TRAINING FOR ALL DENTISTS TO WORK WITH PEOPLE WITH INTELLECTUAL DEVELOPMENTAL DISABILITIES. I KNOW THEY WERE IN A CONVERSATION WITH THE AMERICAN MEDICAL ASSOCIATION AND THE NSAR AUTISTIC RESEARCHERS GROUP WRITING SUPPLEMENTS TO PEDIATRICS, THE JOURNAL. I DON'T KNOW IF IT IS WITHIN AN APPROPRIATE FRAMEWORK FOR US TO TALK ABOUT THE FACT THAT SO MANY PEOPLE -- CHILDREN ARE NOT DIAGNOSED IN A TIMELY FASHION BECAUSE AUTISM IS AN AFTER THOUGHT OR SPECIALTY RATHER THAN IT BEING PART OF GENERALIZED TRAINING FOR PROVIDERS. >> THAT IS RELEVANT, THANK YOU, DINA. WE HAVE MORE OF THAT IN QUESTION 5. HOWEVER WE HAVE SOME INFORMATION ABOUT WORK FORCE NEEDS SPECIFIC TO SCREENING AND DIAGNOSIS HERE. THANKS FOR THAT COMMENT. WE WILL TAKE THAT INTO CONSIDERATION. JENNIFER JOHNSON. >> I HAVE A COUPLE OF -- ONE SUGGESTION THEN A QUESTION. ONE AREA WE MIGHT WANT TO THINK ABOUT INCLUDING EVEN THOUGH NOT SPECIFICALLY RELATED TO DIAGNOSIS OF AUTISM, BUT IS IMPORTANT IS ALSO DIAGNOSING FOR NICO OCCURRING CONDITIONS THAT AN INDIVIDUAL MIGHT HAVE WE ARE HEARING A LOT ABOUT DIFFICULTY IN BEING ABLE TO ADEQUATELY AUTISM VERSUS MENTAL HEALTH DISABILITY. CO-OCCURRING SO AN IMPORTANT ISSUE THE COMMITTEE MIGHT CONSIDER INCLUDING IN THIS QUESTION. OFFER THAT. THEN QUESTION ABOUT ACCESS TO SCREENING AND DIAGNOSTICS, DOES THAT INCLUDE ANYTHING RELATED TO PUBLICLY FUNDED SUPPORTS THAT MIGHT BE AVAILABLE TO PAY FOR ACCESS TO SCREENING AND DIAGNOSIS? I JUST CAN'T REMEMBER IF THAT IS IN THE PLAN OR NOT. >> WE CAN MENTION SOMETHING ABOUT IT IT. DO YOU HAVE SOMETHG SPECIFIC IN MIND? >> I KNOW THERE IS PART C UNDEFILED FINE AND I DON'T KNOW IF THERE IS RESEARCH, I CAN'T RECALL IF IT IS IN THERE, IF THERE'S QUESTIONS RELATED TO THAN AND ALSO EPSDT UNDER MEDICARE AN MEDICAID. WHETHER -- SORRY MEDICAID AND WHETHER THAT AGAIN IS REFERENCED IN THE PLAN. IF NOT WE NEED TO MAKE SURE THOSE THINGS ARE INCLUDED. >> THANK YOU FOR BOTH OF THOSE COMMENTS AS WELL. AND I AGREE IT IS A THEME WITHIN THE COMMITTEE NOW FOR SEVERAL YEARS ONCO OCCURRING CONDITIONS AND WE TRIED TO LEAVE THAT IN THE PARTS OF THE PLAN BUT WE WANTED TO CO-OCCURRING CONDITIONS AND DISTINGUISHING THEM FROM AUTISM FEATURES IS REALLY IMPORTANT. >> ALICE CARTER. >> I WANTED TO SECOND THE CO-OCCURRING MENTAL HEALTH CONDITIONS DIFFERENTIAL DIAGNOSIS, A LOT OF TIMES AUTISM CLINICS ARE SET UP AS AUTISM OR NOT AND NOT LOOKING AT THE WHOLE CHILD BUT ALSO IN TERMS OF WORK FORCE DEVELOPMENT FOR SCREENING A LOT OF TIMES THERE IS FOCUS ON THE TOOLS AND TECHNOLOGY AND THERE'S LESS FOCUS ON TRAINING PEOPLE TO HAVE THE CONVERSATIONS OF EXPLAINING THE LIMITS OF THE TOOLS BUT ALSO HELPING PEOPLE ALONG IN THE PROCESS OF UNDERSTANDING WHAT IT MEANS FOR CHILD TO HAVE AUTISM. SO IN OUR WORK WE ARE USING TOOLS THAT ARE EVIDENCE BASED. BUT THE BIGGEST WORK WE HAVE ENCOUNTERED IS HELPING CLINICIANS FEEL COMFORTABLE WHETHER PEDIATRICS OR EARLY INTERVENTION, HELPING CLINICIANS FEEL COMFORTABLE TALKING AUTISM WITH FAMILIES. AND ALSO RECOGNIZING THAT THERE IS A PROCESS FAMILIES ARE GOING THROUGH, THEY NEED TO WHILE NUDGING GENTLY ALSO GIVE PARENTS TIME TO MOVE AT THEIR OWN PACE. RELY ON RELATIONSHIPS TO HELP FAMILIES MOVE THROUGH A SCREENING TO DIAGNOSIS PROCESS. SO I WANT THE RELATIONAL PIECE AND THE DIFFICULTY LEARNING HOW TO HAVE THESE CONVERSATIONS AS PART OF THE WORK FORCE DEVELOPMENT IN WITH THESE ARE THE TOOLS. DO YOU THINK SPECIFIC TRAININGS, WHAT KIND OF -- SPEAKER5: IT WOULD BE GREAT TO HAVE THAT. I DON'T KNOW THAT THERE ARE TRAININGS OUT THERE THAT ARE PACKAGED ALREADY FOR THIS. BECAUSE WE WERE WORKING IN EARLY INTERVENTION WHICH IS NOT HISTORICALLY A SITE FOR SCREENING FOR AUTISM, AND SOME EARLY INTERVENTION PROGRAMS LIKE AVOID TALKING ABOUT AUTISM. BECAUSE PROVIDERS AREN'T ALLOWED TO DIAGNOSE, WE DID A TON OF WORK TO HELP PROVIDERS HAVE THESE DIFFICULT CONVERSATIONS BUT THAT WAS I FEEL AT T THE HARDEST WORK. TRAINING TO DO ASSESSMENT TOOL WHEN THEY ARE USED TO DOING ASSESSMENTS, NOT THAT HARD, UNDERSTANDING WHAT AUTISM IS, PROFESSIONALS WORKING WITH KIDS ON AUTISTIC KIDS A LOT. NOT SO DIFFICULT. YOU CAN HELP REFINE THEIR UNDERSTANDING BUT REAL PART WAS OPENING THE CONVERSATION BECAUSE THEY WERE JUST REALLY NOT PREPARED FOR THAT. >> GREAT. THANK YOU. WE WILL TAKE THAT INTO ACCOUNT. I WILL MOVE ON TO SCOTT ROBERTSON. >> THANKS, I CONCUR WITH WHAT HAS BEEN SAID AS FAR AS CO-OCCURRING CONDITIONS, MENTAL HEALTH CONDITIONS, ET CETERA, EDUCATING PROVIDERS AND I THINK THAT FITS INTO THE SPACE IN TERMS OF BIASES THAT ARE OUT THERE ABOUT AUTISM THAT I THINK IS REALLY IMPORTANT ON THE DIAGNOSIS PART OF THIS SECTION OF THE STRATEGIC PLAN IS REALLY IMPORTANT. WE ARE ONLY TALKING NEW TOPPINGS BUT THAT FITS INTO LANGUAGE IN HERE GOLD STANDARD FOR -- THINGS LIKE THAT, WAYS TO -- WHEN WE GET TO PHRASING THAT COULD BE ADJUSTED TO BE A LITTLE MORE NEUTRAL IN TERMINOLOGY BUT ONE OF THE ALSO NEWER ELEMENTS IN HERE TOO IS TRAININGS ON HOW TO ADDRESS CERTAIN BIASES AROUND AUTISM. SOMETIMES PROGNOSTICATION, I KNOW I HAVE BEEN USING A COMPLEX WORD BUT ASSERTIONS BY CLINICIANS OF OH YOU ARE NOT CAPABLE OF DOING THIS OR THAT. THAT IS COMMONLY HAPPENING FOR CHILDREN ADOLESCENTS AND FAMILY WHEN THEY RECEIVE DIAGNOSIS THAT CLINICIANS ARE MAKING ASSERTIONS ABOUT AUTISM THAT ARE FRANKLY NOT TRUE. AND IN SOME CASES CLINICIANS WHO HAVE NOT INTERACTED WITH AUTISTIC PEOPLE, DON'T HAVE REALLY GOOD UNDERSTANDING ABOUT AUTISM ACROSS THE LIFE SPAN AND THE HUMAN LIVED EXPERIENCE. AND SUPPORTS AND SERVICES AN ACCESS HUMAN RIGHTS ELEMENTS. SO I THINK THAT IS A KEY ELEMENT TOO FOR THE DIAGNOSIS PORTION IS TRYING TO ADDRESS THESE BIASES, THAT ARE PREVALENT AMONG CLINICIANS ON CONSTANTLY HAVE INTERACTED WITH FAMILIES AND AUTISTIC PEOPLE OVER THE YEARS ON REALLY WORRISOME AND CONCERNING ASSERTIONS MADE BY CLINICIANS WHEN INDIVIDUAL ESPECIALLY YOUNG IT TENDS TO BE SOMETIMES MORE PREVALENT WHEN A KID IS YOUNGER WHERE FOLKS WILL STATE THINGS WHERE THEY HAVE NO IDEA ABOUT LONG TERM PATHWAY IS LIKE FOR THAT INDIVIDUAL, STATING THINGS THAT UNDER THEIR BELIEF SYSTEM THAT ARE NOT TRUE SO I WONDER IF WE CAN FIT THAT INTO THE PLAN SECTION HERE ON THE DIAGNOSIS PORTION, THESE BIASES IN CLINICIANS AND WHAT CAN BE DONE TO HELP ADDRESS THAT AND THAT FITS INTO RESEARCH TOO, MORE RESEARCH ON THE AREA ON HELPING TO ADDRESS BIASES ABOUT AUTISM QUALITY OF LIFE, THE LIVED EXPERIENCE AND HEALTH AND WELLNESS AMONG CLINICIANS INCLUDING THE DIAGNOSTIC PROCESS AND DIAGNOSTIC TOOLS. >> THANK YOU FOR THAT COMMENT. SOUNDS LIKE IT COULD FIT IN WITH SOME OF THE THINGS ALISON IS TALKING ABOUT TOO BUT YOU DESCRIBE THAT IT COULD FIT IN OTHER ASPECTS OF THE STRATEGIC PLAN SO THANKS FOR THAT COMMENT >> YOU ARE IN AGREEMENT, ALICE? >> I AGREE. AND YEAH. I THINK HAVING TO PROCESS WITH FAMILIES ABOUT THINGS THAT PROVIDERS HAVE SAID TO THEM IS NOT ATYPICAL. UNFORTUNATELY. OR UNCOMMON. >> THANK YOU. I'M GOING TO GO TO STEVEN FOR A COMMENT SOMEBODY WROTE IN. >> THIS IS FROM JENNY (INAUDIBLE) THIS MAY FALL UNDER DISPARITIES FOR AUTISM SCREENING AND DIAGNOSIS, THE QUESTION IS WILL WE BE ABLE TO EMPHASIZE AS SUB TOPIC CULTURAL COMPETENCY TRAININGS FOR DIAGNOSTICS AND PROFESSIONAL? SECOND SUB TOPIC THAT PERHAPS COULD BE EMPHASIZED IS LANGUAGE INTERPRETERS SLASH TRANSLATIONS FOR NON-ENGLISH COMMUNICATORS. >> I BELIEVE THAT IS IN THE CHAPTER BUT CERTAINLY AN IMPORTANT POINT SO THANK YOU FOR SHARING THAT I BELIEVE IT IS ALSO IN DISPARITIES SECTION BUT WE CAN GO BACK AND LOOK AT THAT NEXT TO PAUL WONG. >> HI, THANK YOU. I WANTED TO UNDERSCORE ELABORATE ON POINTS MADE BY YOU AND OTHER COMMITTEE MEMBERS. THE FINE POINT SCOTT MADE ABOUT THE ADOS. REALLY IMPORTANT NOT TO ENSHRINE THAT FEE ASSESSMENT IS NECESSARY FOR EVERYBODY TO DIAGNOSTIC PROCESS. I BELIEVE STRONGLY AND OTHERS DO, IT IS NOT NECESSARY THE WORD IS CAREFUL THERE. THE OTHER POINTS I WANT TO MAKE IS IT IS REALLY IMPORTANT TO ADDRESS BETWEEN SCREENING AND DIAGNOSIS. MANY CHILDREN UNFORTUNATELY SCREEN POSITIVE YET NOT REFERRED FOR THOROUGH DIAGNOSIS. AND THERE ARE OTHERS WHO ARE REFERRED FOR THOROUGH DIAGNOSE BUT NEVER MAKE IT THERE. RELATED TO SYSTEMS NAVIGATION BUT THAT ISSUE IS IMPORTANT TO THINK ABOUT EVEN BEFORE DIAGNOSIS, NOT ONLY AFTER DIAGNOSIS ON THE WAY TO SERVICES BECAUSE THERE IS THAT GAP BETWEEN SCREENING AND DIAGNOSIS. THE OTHER POINTS, RELATED TO ALL THIS, OF COURSE, IS THE WORK FORCE NEEDS. I FRANKLY THINK ONE FACTORS THE AVERAGE SIZE OF THE WORK FORCE WE HAVE IS THE INADEQUATE COMPENSATION FOR PEOPLE ENGAGED IN DIAGNOSES. THAT IS AN ISSUE THAT NEEDS TO BE LOOKED AT AND THOUGHT ABOUT POTENTIALLY ADDRESSED. >> THANK YOU SO MUCH. ALSO IMPORTANT POINTS, EVERYTHING EVERYONE IS SHARING IS HELPFUL. THANK YOU. NEXT TAKE A COMMENT FROM JILLIAN PRINCE. >> EXCELLENT. THANK YOU. CAN YOU HEAR ME? >> UH-HUH. >> THANK YOU. I HAVE QUESTIONS, I KNOW WE ARE GOING TO GET MORE SPECIFIC LATER ON ABOUT ADULTS, BUT THERE COULD BE SOMETHING VERY IMPORTANT TO TRACK AND DO A STUDY LONGITUDINALLY AS MUCH AS POSSIBLE TO SEE HOW AUTISM IS MANIFEST IN AN INDIVIDUAL AS A CHILD AND THEN AS THEY BECOME AN ADULT AND SEE HOW THOSE THINGS DIFFER, IF THEY DO, IF THERE IS PARTICULAR EDUCATIONAL PROCESSES THAT THEY GO THROUGH THAT MAY HELP THEM COMPENSATE IN PARTICULAR AREAS OR WHATEVER THAT PROCESS IS, BECAUSE I'M SEEING ON A REGULAR BASIS WITH SITES AND THINGS I MONITOR ANYWHERE FROM FOUR TO FIVE ADULTS A DAY THAT ARE TALKING ABOUT RECENT DIAGNOSIS. WONDERING WHAT THEIR AUTISM MAY HAVE LOOKED LIKE AS A CHILD. HOW DO WE SAY THERE IS A DIAGNOSIS OF AUTISM, IS IT DIFFERENT IN ADULT THAN IT IS IN A CHILD? OR IS THERE PROGRESSION TO GET TO A PARTICULAR POINT? THERE IS A LOT OF SUBTLE QUESTIONS IN HERE ABOUT WHAT IT MEANS TO HAVE A DIAGNOSIS AS AN ADULT AND WHO DOES IT AND WHY DON'T WE HAVE MORE AVAILABILITY FOR THAT. WHAT IT MEANS ALSO IN CHILDREN AS THEY DO AGE AND WHAT AUTISM LOOKS LIKE. SO IT WOULD BE A DEEPER STUDY AND PROBABLY MANY, MANY INDIVIDUALS INVOLVED IN THAT. AND IF THERE COULD BE FUNDING FOR THAT TYPE OF THING. >> THANK YOU, JILLIAN, THAT TOUCHES ON THINGS THAT ARE IN A FEW DIFFERENT CHAPTERS. STEWART MAY HAVE SOMETHING TO TOO. IN PREVALENT STUDIES I KNOW THEY HAVE A LITTLE BIT IN THERE. QUESTION TWO HAS SOME THINGS ABOUT LONGITUDINAL STUDIES, QUESTION ONE HAS WORK ON TRAJECTORIES AS WELL SO ALL THOSE WOULD LAY INTO THAT. THANK YOU FOR THAT COMMENT. I WILL MOVE OVER TO STEWART TO SEE IF YOU HAVE ANYTHING TO SAY IN RESPONSE AND ALSO WHATEVER ELSE YOU WANTED TO SHARE. >> THANK YOU, SUSA SUSAN. MY COT IS TO KNOP ON HER COMMENTS BECAUSE THESE ARE IMPORTANT QUESTIONS TO KNOW MORE ABOUT THE TRAJECTORY OF INDIVIDUALS WITH AUTISM AND HOW THINGS CHANGE OVER TIME THE CDC IS CONDUCTING SUCH A LONGITUDINAL STUDY WHICH IS FOLLOW-UP STUDY FROM CDC STUDY TO EXPLORE EARLY DEVELOPMENT WHICH INITIALLY ENROLLED CHILDREN AT AGE 3 TO 5 YEARS WITH AUTISM FOLLOWED UP IN EARLY TEENAGE YEARS AND WILL BE FOLLOWING UP AGAIN LATER ON. MANY QUESTIONS YOU ASK ARE BEING EVALUATED AS PART OF THIS STUDY. THOUGH IT IS A SINGLE STUDY, SO I AGREE MORE IS NEEDED IN THIS AREA BUT THE SEED FOLLOW-UP STUDIES AND THE SEED TEAM STUDY ARE SHEDDING LIGHT IN ORDER TO ANSWER THESE QUESTIONS YOU RAISE. THANK YOU SO MUCH FOR RAISING THOSE. >> THANK YOU, STEWART. WE WILL -- I KNOW WE DO HAVE A LITTLE MENTION OF SOME OF THAT IN QUESTION 7 BUT WE'LL MAKE SURE THAT WE COVER THAT AS WELL. SO NEXT SOUNDS LIKE THERE ARE NO NEW PEOPLE ASKING QUESTIONS SO GOING TO GO TO DINA. >> THANKS. I HAVE BEEN DRAWING DOWN A COUPLE OF NOTES HERE. ONE THING FREQUENTLY MISSING TALKING SYSTEMS NAVIGATION, I APPRECIATED THE COMMENTS ABOUT PACING TO THE PARENTS' CAPACITY. WE ARE OFTEN NOT INFORMING THOSE PROVIDERS THAT ARE DELIVERING THAT DIAGNOSIS, THE REALITY OF THE HIGH RATE OF PARENTAL DISABILITY WITHIN THIS POPULATION. IT MAYBE AUTISM THAT WAS NEVER IDENTIFIED, THEY MAY HAVE EXECUTIVE FUNCTION OR PROCESSING ISSUES RELATED TO ADHD, THEY MAY HAVE ANXIETY DISORDER, THERE COULD BE A BILLION OTHER THINGS HAPPENING IN THE BROADER PHENOTYPE OF THESE PARENT THAT MAKE DELIVERING THE INTERVENTION AND SYSTEMS NAVIGATION INFORMATION TOO OVERWHELMING AT THAT TIME. SO I THINK WHAT WE WOULD RATHER SUGGEST IS THAT THAT DIAGNOSTIC PROCESS NEEDS TO BE A MULTI-SERIES PROCESS TO HELP PARENTS ABSORB THAT INFORMATION OVER TIME RATHER THAN HANDING THEM A PACT AND SENDING THEM OUT THE DOOR WHICH FREQUENTLY HAPPENS. WE NEED TO TALK ABOUT WAIT LISTS. WE HAVE OUTRAGEOUSLY DELAYED WAIT LISTS PARTICULARLY IN REGARD TO ADULT DIAGNOSIS. WE NEED TO ENCOURAGE THE DELIVERY IN THAT INFORMATION THAT IT NEEDS TO INCLUDE MULTIPLE INTERVENTION TOOLS AND NOT JUST ABA, THERE IS SENSORY PROCESSING SUPPORT, SPEECH LANGUAGE SUPPORT SERVICES PEOPLE JUST GO TO ABA WITHOUT A LOT OF INFORMATION ASSUMING IT IS THE BEST STEP. FOR MANY PEOPLE IT IS NOT. I TOTALLY NEED -- THINK THAT WE NEED FOR ANYBODY WHO WRITES A REPORT RELATED TO SOMEONE ON THE AUTISM SPECTRUM NEEDS TO LEARN HOW TO WRITE TO THE AUDIENCE THAT IT IS BEING DELIVERED TO. FOR EXAMPLE, WHEN YOU WRITE A DIAGNOSTIC REPORT FOR SCHOOL SYSTEM YOU PROBABLY HAVE TO PROMOTE STRENGTH TO GET THE SCHOOL TO BUY INTO INVESTING IN RESOURCES INTO THAT STUDENT. HOWEVER IF YOU WRITE THE SAME REPORT IN AUDIENCE SOCIAL SECURITY, STRENGTH IS NOT WHAT YOU WANT TO LEAD WITH. OBVIOUSLY YOU DON'T MISREPRESENT ANYTHING BUT FOCUS ON DEFICITS FOR SOCIAL SECURITY. WITH VOC REHAB YOU HAVE TO WALK A LINE BETWEEN DEFICITS AND CAPACITIES. I DON'T THINK THAT DIEING MOST SIGNATURES ARE BEING TAUGHT HOW TO ADAPT THEIR REPORTS TO CONSIDER NOT ONLY WHO IS GOING TO BE USING THE INFORMATION BUT HOW IT IS UTILIZED. I DON'T KNOW IF IT IS HERE OR SOMEWHERE ELSE BUT SOMEBODY WORKING WITH A SPECIFIC GOVERNMENT SYSTEM I FIND IT PURR PORTS TO BE NEARLY UNUSABLE IN THE STANDARDIZED TEMPLATE PSYCHOLOGISTS ARE TRAINED ON FOR EXAMPLE. THANK YOU. >> THANK YOU, THANK YOU FOR THOSE HELPFUL COMMENTS. IT FITS IN HERE AND PROBABLY SOME OTHER PLACES AS WELL. SO WE APPRECIATE THAT. NEXT I WILL GO BACK TO STEVEN, SOUNDS LIKE YOU MAY HAVE COMMENTS FROM SOMEONE WHO WROTE IN. >> I HAVE A COMMENT FROM DR. STAR ROBERTSON. I WANT TO CLARIFY REGARDING ADOS THAT IT HAS MAJOR LIMITATIONS AND SOMETIMES MISSES AUTISTIC PEOPLE BECAUSE OF BIASES ABOUT AUTISM AND LIVED EXPERIENCE. IT HAS MORE LIMITATIONS FOR DIAGNOSING ADULTS AND OLDER ADOLESCENTS BUT SOMETIMES AUTISTIC CHILDREN ARE MISSED BY ADOS TOO. THAT IS MY MAIN CONCERN REGARDING REFERRING TO ADOS OR ANY OTHER SCREENING INSTRUMENTS AS THE GOLD STANDARD, ONE SHOULD RECOGNIZE INHERENT LIMITATIONS AND CULTURAL AND GENDER BIASES, AND OTHER BIAS FOR ADAPTATIONS AMONG AUTISTIC PEOPLE THAT MAY HINDER RECOGNIZING SAME CHARACTERISTICS OF AUTISM, ADOS AND OTHER SCREENING INSTRUMENTS, ARE ALSO SUBJECTIVE IN NATURE IN A SENSE OF CLINICIANS INTERPRETATIONS OF HUMAN BEHAVIOR AND COMMUNICATION. >> THANK YOU, SCOTT FOR THOSE COMMENTS. WE WILL TAKE NOTE OF THAT. JENNIFER JOHNSON, ADDITIONAL COMMENTS? >> ANOTHER POPULATION THAT WE MIGHT WANT TO THINK ABOUT BEING INCORPORATED IN TO THE STRATEGIC PLAN, NOT SURE IF IT IS ALREADY IN THERE. ALSO SCREENING AND DIAGNOSIS FOR PEOPLE INCARCERATED. BECAUSE THERE IS A LOT OF CROSS OVER THERE AS WELL AND A LOT OF PEOPLE WHO ARE NOT DIAGNOSED OR MAYBE DIAGNOSED BUT MISDIAGNOSED SO JUST INCORPORATING ANYBODY INCARCERATED INTO THE POPULATION OF THAT ARE COVERED UNDER THIS QUESTION. >> THANK YOU. I DON'T THINK THAT WE HAVE ANYONE FROM DOJ ON THE CALL TODAY BUT WE CAN CHECK IN WITH THEM AND SEE IF THEY HAVE COMMENTS ON THAT AS WELL TO HELP US WITH THAT. THAT ISN'T A POPULATION THAT WE HAVE EVER TALKED ABOUT IN THE PLAN BEFORE >> OKAY. DO WE HAVE MORE COMMENTS ABOUT SCREENING AND DIAGNOSIS RELATED ISSUES? ANYONE ELSE HAVE ANYTHING THEY WANT TO SHARE? >> SECOND GENERATION FAMILIES. THERE IS A LOT OF GRAND PARENTS RAISING CHILDREN IN THIS POPULATION. >> WHAT ABOUT THAT? >> I JUST THINK SUPPORTS AND SERVICES ARE GOING TO HAVE TO BE INCREASED. FOR THESE SECOND GENERATION PARENTS THAT ARE IN THEIR 60s AND 70s RAISING TODDLERS. THEY WILL NEED ADDITIONAL HELP THAT WE DON'T TALK ABOUT VERY OFTEN. >> THAT MAY FIT A LITTLE MORE QUESTION 5, WE CAN TAKE NOTE OF THAT. I THINK THAT IN THE CAREGIVERS COMMITTEE THEY HAVE BEEN TALKING ABOUT THAT ISSUE AS WELL. SO THAT IS HELPFUL. DOES ANYONE ON THE COMMITTEE HAVE COMMENTS ABOUT NEW TECHNOLOGIES IN SCREENING AND DIAGNOSIS AND THE DIRECTION THAT THAT IS MOVING IN AND WHAT WE MIGHT WANT TO TALK ABOUT IN THE PLAN WITH REGARD TO THAT? ALICIA, YOU HAVE A COMMENT. >> I HAVE A COMMENT ABOUT RESEARCH TOOLS AND TECHNOLOGIES, MY FIRST COMMENT IS I WANT TO REITERATE EVERYTHING PAUL SAID, I HAD MY HAND RAISED AND LOWERED BECAUSE HE SAID EVERYTHING I WAS THINKING IN TERMS OF MAKING SURH E WELL TRAINED CLINICIANS AND A WORK FORCE. TO THINK ABOUT ISSUES AND WHY THESE DOCTORS ONLY HAVE A CERTAIN AMOUNT OF TIME AND ONLY REIMBURSED FOR A CERTAIN AMOUNT OF TIME TO SEE SOMETIMES COMPLEX CASES. BUT I DID WANT TO MAKE A COMMENT ABOUT THE SCREENING ANDND DIAGNOSIS RESEARCH TOOLS AND TECHNOLOGIES, I'M SEEING THE LAST FEW YEARS, MAYBE I HAVE BEEN LIVING UNDER A ROCK BUT THE LAST FEW YEARS I HAVE BEEN SEEING A LOT MORE COME THROUGH IN TERMS OF IDEAS, PAPERS, NEW COMPANIES THAT STARTED UP, PLACES THAT ARE TAKING THEIR INITIAL PILOT TO MARKET. I THINK WE PROBABLY NEED I DON'T KNOW IF THIS IS IACC THING BUT WE NEED TO HAVE COORDINATION AMONG THEM, A LOT OF THEM ARE NOT VERY SPECIFIC BUT THAT IS NOT ALWAYS A BAD THING, THEY MAY NOT BE SPECIFIC TO AUTISM BUT MAY PICK UP OTHER THINGS BUT THERE IS A PROPOSAL THEY BE USED IN ALL SORTS OF DIFFERENT ENVIRONMENTS WHICH COULD REALLY RISK THEIR ACCURACY AS WELL. THIS COULD INCLUDE EVERYTHING FROM THESE TOOLS, CAMERAS FOR EYE TRACKING, PEOPLE ARE CONSIDERING NEW GENETIC TESTS, OTHER BIOMARKERS, BIOMARKERS NOT JUST FOR DIAGNOSIS BUT FOR TREATMENT INTERVENTION TRIALS, AND I THINK THAT MY MAJOR TAKE AWAY IS THAT IT WOULD BE GREAT IF WE COULD INTEGRATE THEM ALL TOGETHER BY THE MAGIC NUMBER WHICH I KNOW OR MAGIC COMBINATION WHICH IS A HARD THING TO DO. MAYBE THAT IS WHAT WE NEED TO STRIVE FOR INSTEAD OF SAYING THIS IS THE ONE THAT EVERYONE SHOULD HAVE. OR WHERE WE SHOULD BE OPEN TO A MIX OF DIFFERENT THINGS. >> THANK YOU FOR THAT. DO WE HAVE ANY SENSE OF WHAT THE IACC MIGHT WANT TO RECOMMEND IN TERMS OF TRYING TO CUT DOWN ON WAITING LIST? I KNOW THAT ISSUE IS MENTIONED BUT IS THERE ANYTHING THAT WE MIGHT WANT TO BRING OUT IN THE STRATEGIC PLAN AS AS WAYS THAT WE CAN ASSIST WITH GETTING THESE WAITING LISTS CUT DOWN. >> I WILL ADD TO THAT, WE REALLY, REALLY, REALLY NEED TO BOOST THE WORK FORCE HERE. IT IS THE NUMBER OF -- I THINK IT IS COMBINATION OF NUMBER OF PROVIDERS AND THE TIME AND TRAINING THEY GET. BUT THEY ARE EXPECTED TO DO SO MUCH THAT I THINK THAT WE NEED TO THINK ABOUT WAYS TO BETTER TRAIN INDIVIDUALS WHO MAKE THAT DIAGNOSTIC EVALUATION. ALSO IN TERMS OF WAITING LISTS THERE ARE SYSTEMS THAT ALLOW INDIVIDUALS TO RECEIVE EARLY INTERVENTION BEFORE DIAGNOSIS MADE SO THE DIAGNOSIS DOES A LOT BUT KIND OF THOSE EARLY AGES IT CAN EVEN IF THERE IS A CONCERN OR WE THINK MORE BROADLY ACROSS WHETHER OR NOT IT IS AUTISM OR SOMETHING ELSE BECAUSE IF IT IS JUST AUTISM THAT IS GETTING KIDS INTO INTERVENTION OR AUTISM GETTING MENTAL HEALTH SERVICES, THEN THAT IS SOMETHING THAT NEEDS TO CHANGE. >> THAT IS NOT IN ANY WAY TRUE FOR ADULTS JUST TO REINFORCE THAT, I KNOW YOU KNOW THAT ALICIA BUT I WANTED TO -- YOU CAN'T GET ANYTHING WITHOUT THE LABEL FIRST. AND ADULT SERVICES FOR THE MOST PART. THANKS. >> THANK YOU. I WILL GO TO MYCHEL BURGER. FROM SAMHSA. >> YES. GOOD AFTERNOON. I JUST WANT TO MENTION AMONG THE VARIOUS CO-MORBIDITIES SUBSTANCE USE DISORDERS SOMETHING PROVIDERS SHOULD (INAUDIBLE) AUTISTIC PATIENTS AND THOSE IN SUBSTANCE USE DISORDER FACILITIES, I BELIEVE I SENT SOME REFERENCES ON THAT. >> IT IS HARD TO HEAR. DID SOMEBODY ELSE CATCH -- CAN YOU SAY IT AGAIN? I'M SORRY. >> YES. I WAS GOING TO SAY SUBSTANCE USE DISORDERS IS SOMETHING THAT SHOULD BE SCREENED FOR BOTH BY PROVIDERS OF CURE TO AUTISTIC PERSONS AND THOSE SUBSTANCE USE FACILITIES. I WOULD NOTE IT IS A CO-MORBIDITY AND I BELIEVE I SENTENCE YOU COUPLE OF REFERENCES ON THAT. >> GOT IT. THANK YOU. APPRECIATE THAT. MATTHEW. >> HI, SUSAN THANKS. SO JUST FOLLOWING ON THE PRIOR COMMENT, WE COULD MAKE A STATEMENT IN UNDER QUESTION ONE ON THE NEED TO FOSTER MORE RESEARCH ON USING TOOLS AN TECHNOLOGIES TO EXPAND DIAGNOSTIC CAPABILITY AND MEASURE THE EFFICACY AND EFFECTIVENESS OF THAT. OF COURSE THAT RELATES TO THE COMMENTS PEOPLE MADE ABOUT THAT DIRECTLY RELATES TO WAIT LIST, TRAINING AND COMMUNICATION AROUND DIAGNOSIS THANK YOU. >> GREAT. >> GREAT. THANK YOU. I SAW YOUR HAND RAISED FOR A MOMENT, DID YOU WANT TO USE YOUR AAC OR DID YOU WANT TO SEND SOMETHING TO STEVEN? STEVEN DO YOU HAVE SOMETHING FROM HARRY? >> HE DID SEND ME A FEW COMMENTS. HE SAID THERE IS A NEED TO TRAIN PEOPLE DOWNSTREAM WITH LOWER QUALIFICATIONS. AND REQUIREMENTS TO DO SOME OF THE MORE ROUTINE TESTS. THIS WILL TAKE THE BURDEN OFF FULLY QUALIFIED PERSONNEL. BUT THE COST TO FAMILY SHOULDN'T BE INCREASED JUST ASK DELEGATION TO INCREASE THE WAIT LIST. >> HUE F THANK YOU FOR THAT COM. SCOTT, DO YOU HAVE ANOTHER COMMENT IN >> , SUSAN, I CONCUR ON THE WORK FORCE DEVELOPMENT SUPPORTING BETTER WORK FORCE DEVELOPMENT AND WORK PROVIDERS OUT THERE INCLUDING SUPPORT DIAGNOSIS ACROSS THE LIFE SPAN, THAT FITS INTO SOME OF OUR FOCUS HERE WITH DEPARTMENT OF LABOR IS THAT WE ARE BIG BELIEVERS ON HAVING ENHANCEMENTS TO TALENT WORK FORCE DEVELOPMENT ON THAT SPACE AND I THINK TECHNOLOGY WILL HELP. I THINK THERE ARE -- FOLKS SHOULD BE CAREFUL AND THIS IS WHERE IT CAN HELP WITH PARTNERING WITH AUTISTIC PEOPLE AND FAMILIES TO -- WITH TECHNOLOGY, NEW TOOLS TO ADDRESS BIASES AND MAKE SURE FOLKS ADDRESS ISSUES THAT MAY COME UP IN TERMS OF HOW THOSE TOOLS LOOK FOR AND EXAMINE AND CONSIDER TRAITS AFTER AUTISM CHARACTERISTICS. I'M THINKING PARTIALLY FOR INSTANCE USE OF ARTIFICIAL INTELLIGENCE, MACHINE LEARNING SOME NEWER EMERGING TECH THAT IS COMING UP, WE FOCUS ON THAT AT THE OFFICE OF DISABILITY EMPLOYMENT POLICY BECAUSE OF THE IMPACT ON PEOPLE WITH DISABILITIES. THOSE TECHNOLOGIES BY THEIR NATURE HAVE HAD MANY LIMITATIONS IN THE LAST FIVE OR TEN YEARS AND HAVE HAD ISSUES ALREADY WITH HOW THEY CONSIDER DISABILITY IN THE LIVED EXPERIENCE. SO I THINK IT IS SOMETHING THAT CAN BE HELPFUL, TECHNOLOGY IS GOING TO BE FULL IN THAT SPACE FOR A DIAGNOSIS IN CHILDHOOD ADOLESCENTS AND ADULT LIFE BUT SHOULD BE SOMETHING FOLKS SHOULD BE CAREFUL AND STRATEGIC ABOUT AND THOUGHTFUL ABOUT AND AS I SAY PARTNER WITH AUTISTIC PEOPLE AND FAMILIES. I WANTED TO MENTION BRIEFLY, SUSAN, RELATED TO WHAT WAS MENTIONED ON -- I CONCUR WHAT WAS MENTIONED ON SUBSTANCE USE AMONG AUTISTIC FOR INSTANCE ADOLESCENTS AND ADULTS, I HOPE IT IS NOT REALLY HAPPENING SO MUCH AS FAR AS SUBSTANCE USE AMONG YOUNGER KIDS. IS THAT THAT IS AN AREA WHERE RESEARCH THAT IT COULD BE CALLED OUT AMONG OTHER AREAS IN THE PLAN WHERE WE HAVE UNDERRESEARCHED FOCUSES. THE RESEARCH IS VERY LIMITED, AROUND SUBSTANCE USE ISSUES AND BARRIERS AMONG INCLUDING APPLE USE AND DRUG USE ET CETERA AMONG AUTISTIC ADOLESCENTS AND ADULTSESES. WE NEED MORE RESEARH THERE AND HOW THAT CROSS CONNECTS TO THINGS LIKE MENTAL HEALTH AND THE LIVED EXPERIENCE OF CHALLENGES EXPERIENCED AS FOLKS ON AGE THROUGH DEVELOPMENT ACROSS THEIR LIFE. I WANT TO MENTION BRIEFLY, WHILE I CONCUR THE COMMENT JENNIFER MENTIONED EARLIER AS FAR AS FOLKS FROM JUVENILE JUSTICE, AND PRISON POPULATIONS, IS ALSO UNDERRESEARCHED AS FAR AS QUALITY OF LIFE, HEALTH AND WELLNESS, ET CETERA AND WHAT THAT MEANS ACROSS THE LIFE SPAN. IF IT IS MENTIONED AS TOPIC FOCUS IN THERE, I WOULD REFER TO FOLKS AS CONTACT WITH THE JUSTICE SYSTEM SINCE THERE ARE CERTAIN TERMS LIKE INCARCERATED THAT CAN CREATE EXTRA STIGMA FOR FOLKS. THAT FITS INTO LONGER TERM DISCUSSION MAKING SURE TO USE NEUTRAL AND STRENGTH BASED INCLUSIVE LANGUAGE. >> GREAT. THANK YOU. DO WE HAVE ANY COMMENTS REGARDING REDUCING DISPARITIES IN AUTISM SCREENING AND DIAGNOSIS? I KNOW WE HAVE SOME INFORMATION IN THE DRAFT BUT IF THERE ARE THINGS THAT COME TO MIND THAT WE SHOULD MAKE SURE THAT WE MENTION WOULD BE GREAT TO GET A COUPLE OF COMMENTS ABOUT THAT. >> DINA.MENT >> I WOULD POINT OUT TWO THINGS. I THINK THAT DIAGNOSIS FOR WOMEN IS STILL A VERY HIGH PRIORITY. I ALSO THINK DIAGNOSES FOR PEOPLE WHO ARE GENDER DIVERSE IS STILL VERY MUCH COMPLICATED. BECAUSE THEY SEE THE GENDER DIVERSITY VERSES THEY DON'T SEE THE AUTISM SIDSIDE. I WOULD ALSO SAY WE HAA HUGE VOID IN EXAMINING THE POTENTIAL DELAY IN DIAGNOSES FOR MALES WHO HAVE LOW SUPPORT NEEDS. WE TALK ALL THE TIME HOW MUCH MORE COMMON DIAGNOSIS IS FOR MALES, HOWEVER SOMEONE WORKING IN THE ADULT COMMUNITY, I CONTINUE TO HEAR FROM MALES THAT THE THING WE HAVE STEREOTYPED AS A PEAL EXPERIENCE OF ADHD CAMOUFLAGING, MASKING, BEING A BARRIER IS HAPPENING AS WELL TO MALES, AND NO ONE IS DOING RESEARCH TO SEE THE FREQUENCY OF THAT, TO SEE IF IT PARALLELS TO THE SIMILAR EXPERIENCE OF AUTISTIC WOMEN, TO SEE IF THEIR EXPERIENCING INCORRECT MENTAL HEALTH DIAGNOSES COMMON AMONG WOMEN, I THINK THAT QUITE OFTEN WE ASSIGN THESE THINGS TO BINARY GENDER STATUSES WHEN WE HAVEN'T DONE THE COMPLETE RESEARCH ON THAT. SO I THINK THAT THAT IS A GAP IN TERMS OF SCREENING AND DIAGNOSIS, MANY PEOPLE ARE SAYING THEIR KIDS NEVER GOT ANY SERVICE IN PUBLIC SCHOOL BECAUSE THEY WERE DIAGNOSED WITH ADHD INSTEAD OF AUTISM. THEY GET THEIR AUTISM DIAGNOSIS IN MIDDLE SCHOOL OR HIGH SCHOOL WHEN THEY ARE MUCH MORE EMOTIONALLY FRAGILE. >> THANK YOU, DINA. GREAT COMMENTS. ALSO JILLEN WOULD YOU LIKE TO MAKE SOME COMMENTS? >> YES. I WONDER ABOUT WHO IT IS THAT COMES UP WITH DIAGNOSIS. WE ENDED UP IN DEBATE THIS LAST WEEK IS THE PEDIATRICIAN, IS IT A PSYCHIATRIST, IS IT SOMEBODY IN PSYCHOLOGY, IS IT A GENERAL PRACTITIONER. AND WHAT IS THE DIFFERENCE BETWEEN RURAL AND URBAN AREAS AND THE QUALIFICATIONS OF THE PHYSICIANS, BECAUSE PARENTS WERE EVEN DEBATING, THAT CHILD DOESN'T LOOK AUTISTIC BECAUSE THEY WERE DIAGNOSED BY X RATHER THAN Y. DOES THAT ALSO CARRY IN TO THINGS AGAIN WITH ADULTS WHO DOES THIS AND WE MAY HAVE VARIOUS MARKERS BUT ARE THEY CONSISTENT WITH THE TRAINING OF VARIOUS GROUPS OF PEOPLE IN RUNNING THESE EXAMINATIONS. BECAUSE I KNOW SOME UNIVERSITIES THE CHILDREN'S HOSPITAL HEARING IN WASHINGTON THEY HAD A WHOLE TEAM WHEREAS SOME PARENTS I KNOW WALKED OUT OF A PEDIATRICIAN OFFICE WHERE HOURS OF EXAMINING A CHILD. I DO THING THERE IS A LOT OF DISPARITIES THERE. I'M VERY INTERESTED TOO IN SEEING IF WE CAN GET SOME MORE INCENTIVES INTO BEING ABLE TO HELP PEOPLE GET INTO THIS FIELD. AS WE ALSO NEED IN MANY OTHER ASPECTS OF AUTISM, WE NEED MORE PROFESSIONALS IN MANY, MANY, MANY MORE AREAS. THANK YOU. >> THANK YOU FOR THOSE COMMENTS. SOUNDS LIKE A THEME ABOUT WORK FORCE NEEDS AND WE WILL MAKE SURE WE EMPHASIZE THAT. IN THE NEW STRATEGIC PLAN. I DON'T SEE ANY MORE HANDS RAIDED ON QUESTION ONE. ANY -- RAISED ON QUESTION ONE. ANY LAST COMMENTS ABOUT THIS QUESTION? SOUNDS LIKE WE HAVE HAD A -- THERE ARE COUPLE MORE I SPOKE TOO SOON. HARRY. >> HARRY SENT ME ONE COMMENT. HE SAID ONCO MORBIDITIES THERE IS AN EARLIER NEED FOR MENTAL CO-MORBIDITIES MENTIONED. NEED TO LOOK AT HEALTH CO-MORBIDITIES COVERED IN BIOLOGY SECTION MANY WITH POOR HEALTH BUT UNADDRESSED DUE TO DIAGNOSIS OVERSHOWN AND I ALSO HAVE ANOTHER COMMENT FROM SCOTT ROBERTSON. HE SAID I ALSO MEANT TO NOTE WAITING LIST AND BARRIERS, WE NEED SYSTEMS NAVIGATORS FOR AUTISTIC CHILDREN ADOLESCENTS AND ADULTS IN OUR FAMILIES AUTISTIC PEOPLE WHO HAVE OPPORTUNITIES TO WORK SYSTEMS NAVIGATORS TO EMPOWER FELLOW AUTISTIC PEOPLE INCLUDING CHILDREN AND YOUTH AFTER DIAGNOSIS, SYSTEMS 1/2 GAY ORS GO A LONG WAYWARD -- NAVIGATORS TO GO A LONG WAY TO BARRIERS FACED BY AUTISTIC PEOPLE AND THEIR FAMILIES. >> THANK YOU FOR THOSE COMMENTS HARRY. I SEE A COMMENT FROM MITCHELL BURGER ALSO SAYING AUTISTIC PERSON AS PEER SUPPORTS BEING PART OF THE WORK FORCE IS IMPORTANT. NOT SEEING ANY MORE HANDS RAISED ON THIS QUESTION. SO WE ARE A LITTLE AHEAD OF SCHEDULE, I WILL ASK THE GROUP WOULD YOU PREFER WE GO RIGHT ON TO QUESTION 2 OR TAKE OUR 15 MINUTE BREAK NOW? HOW MANY WANT A BREAK, RAISE YOUR HAND? >> NOT SEEING ANY OR NOT SEEING MANY. SO WHAT WE WILL DO IS JUST MOVE RIGHT ON TO QUESTION 2 THEN TAKE YOUR BREAK AFTER THAT. MY SLIDE SEEMS TO HAVE DISAPPEARED SO MIGHT NEED HELP FROM THE TECH TEAM TO PUT THEM BACK. HAND BACK CONTROLS AGAIN. THANK YOU. THAT WILL GET US BACK TO WHERE WE WERE. WE WILL MOVE RIGHT INTO QUESTION TWO WHICH IS ON THE BIOLOGY OF AUTISM. THE PROPOSED SHORTENED QUESTION PLEASE MUTE. IS WHAT IS THE BIOLOGY UNDERLYING AUTISM? SO THAT SIMPLIFIES THAT QUESTION. AND DIFFERENT KINDS OF TOPICS INCLUDED IN THIS SECTION INCLUDE MOLECULAR MECHANISMS AND GENES IMPLICATED IN AUTISM, STRUCTURE AND FUNCTION OF BRAIN CIRCUITS, SENSORY AND MOTOR DIFFERENCES, COGNITIVE AND COMMUNICATION DIFFERENCES, THE IMMUNE SYSTEM AND DEVELOPMENT OF AUTISM. SECTION AND GENDER DIFFERENCES. LONGITUDINAL STUDIES CO-OCCURRING CONDITIONS AND RESEARCH POLICY ISSUES INCLUDING DATA SHARING ETHICS INCLUSION OF DIVERSE RESEARCH PARTICIPANTS AND AUTISTIC INDIVIDUALS ACROSS THE ENTIRE SPECTRUM AND ACROSS THE LIFE SPAN. SO THOSE ARE SOME OF THE TOPICS WE TOUCHED ON IN THE DRAFT, SIMILAR TO LAST TIME THE SAME TWO DISCUSSION QUESTIONS I PREPARED FOR EACH OF THESE SECTIONS, ARE THERE ANY IMPORTANT TOPICS OR POINTS WE NEED TO INCLUDE WITHIN THIS. ARE THERE SOME RECENT CHANGES SHIFTS IN THE FIELD THAT COULD IMPACT THE DIRECTION SINCE WE LAST UPDATED THE PLAN IN 2017. SO THINK ABOUT THAT. ANYTHING THAT YOU THINK SHOULD INFORM US ABOUT WHAT THE NEW DIRECTIONS SHOULD BE IF THERE IS GOING TO BE SOME SHIFT IN CERTAIN AREAS. SO I WILL TAKE THE FIRST QUESTION FROM OR COMMENT FROM DINA GASTNER. >> THINGS I THINK MIGHT BE MISSING IS CO-OCCURRING PHYSICAL DISABILITY CONDITIONS WITH THE RECENT INTEREST IN THE STUDY OF SAY FOR EXAMPLE EILERS DAN LOS, POTTS OTHER CONDITIONS SUCH AS THAT, THE INTERSECTIONALITY WITH LONG HAUL COVID. IS AN AREA, AND THE INTERSECTIONALITY WITH THE PHYSICAL AND EMOTIONAL IMPLICATIONS OF BOTH SHORT TERM INTENSE AND LONG TERM CHRONIC TRAUMA. >> THANK YOU FOR THOSE. I KNOW WE DID HAVE SOMETHING ABOUT EILERS DAN LOS, I DON'T THINK WE HAVE ANYTHING ABOUT POTTS. AND LONG HAUL COVID IS SOMETHING THAT WE CAN TAKE INTO CONSIDERATION AND TRAUMA IS INCLUDED IN ANOTHER SECTION BUT WE CAN SEE IF THERE IS ANY OVERLAP NEEDED HERE IN QUESTION 2. THANK YOU FOR ALL THOSE COMMENTS. IN PREVIOUS MEETINGS YOU MENTIONED TRAUMA AS AN AREA, WE DID TRY TO MAKE SURE THAT WAS INCLUDED IN ANOTHER PART OF THE STRATEGIC PLAN. >> THANK YOU. >> WE APPRECIATE THAT. LOOKS LIKE STEVEN HAS A COMMENT. >> HI THERE. ARI SENT ME A COMMENT ABOUT INTERSECTIONALITY WITH MOVEMENT DISORDER. >> THANK YOU. I DON'T THINK THAT HAS EVER BEEN COVERED BEFORE IN THE PREVIOUS STRATEGIC PLAN. SO OTHER ISSUES THAT COME TO MIND OF THINGS YOU FEEL ARE IMPORTANT FOR US TO MENTION IN THE NEW STRATEGIC PLAN RELATED TO THE BIOLOGY OF AUTISM? AND THE BIOLOGY OF CO-OCCURRING CONDITIONS? WE DO INCLUDE PHYSICAL AND MENTAL HEALTH CONDITIONS. SCOTT. >> WHAT I WONDER TOO IS WHETHER IT MAYBE HELPFUL TO THINK STRATEGICALLY ABOUT THE -- HOW THIS CHAPTER IS NAMED GIVEN ALL TOPICS IT ENCOMPASSES AND WHEN FOLKS THINK BIOLOGY THEY MAY NOT NECESSARILY BE THINKING COGNITIVE COMMUNICATION DIFFERENCES OR SENSORY MOTOR DIFFERENCES, ET CETERA. SO I DON'T KNOW IF THAT SOMETHING THAT THE COMMITTEE COULD CONSIDER IS I KNOW THIS IS HISTORICALLY CALLED BIOLOGY SECTION BUT I THINK IT IS GROWN TO ENCOMPASS SOME OTHER AREAS THAT MAY NOT FIT AS NEATLY IN TO BIOLOGY. I WOULD PUT IN EXECUTIVE FUNCTIONING, WOULD FIT IN THERE AS FAR AS WITH SENSORY MOTOR DIFFERENCES ARE VASTLY STUDIED IN AUTISM AND IS THAT GOING TO FUNCTION MORE SO AMONG CHILDREN YOUTH AND ADULTS, WE HAVE MAJOR ISSUE AREA THERE WITH -- THAT I HAVE SEEN WITH REVIEW PAPERS RECENTLY, I CAN SEND YOU THE LITERATURE, SUSAN, IS ON EXECUTIVE FUNCTIONING AND THE SENSORY MOTOR, IS THAT WE -- IT IS VERY COMMON FOR CLINICIANS AND OTHERS TO BE STILL THINKING OF AUTISM SINGULARLY AS SOCIAL COMMUNICATION. LEAVING PRETTY MUCH EVERYTHING ELSE OUT ABOUT THE LIVED EXPERIENCE. THOUGH EXECUTIVE FUNCTION SENSORY MOTOR THERE ARE SIGNIFICANT CHALLENGES TO FOLKS IN THESE AREAS. THAT IS HELPFUL FOR AUTISTIC CHILDREN ADOLESCENTS AND ADULTS AND OUR FAMILIES FOR SUPPORT AND WHAT HAPPENS FOR RESEARCH PRACTICE AND POLICY CHANGE IN THIS SPACE IS REALLY KEY. FOR ADDRESSING THAT AREA IN TERMS OF GAPS ON THE LITERATURE IN THAT SPACE. I THINK ALSO COGNITIVE ADAPTATIONS THAT FOLKS MAY MAKE AS THEY GROW UP THROUGH LIFE, THAT IS SORT OF COVERED BY COGNITIVE DIFFERENCE BUT I THINK ALSO THAT THIS FITS INTO MASKING AND CAMOUFLAGING AUTISM, HOW SHIFTS AS FAR AS HOW DO SOME FOLKS LEARN TO ADAPT AND WHAT WOULD BE HELPFUL FROM LEARNING FROM THAT MAYBE HELPFUL FOR OTHER AUTISTIC PEOPLE FOR SUPPORTING EMPOWERMENT FOR AUTISTIC PEOPLE AS FOLKS AGE THROUGH CHILDHOOD AS LESS SENTS AND ADULT LIFE, THAT IS ALSO UNDERSTUDY AND FOCUSED IN PRACTICE IS WHAT THE ADAPTATION PROCESS LOOKS LIKE, WHAT RESILIENCE LOOKS LIKE, WHAT CHALLENGES LOOKS LIKE AND THERE MAYBE LESSONS LEARNED FROM WHAT IS HELPFUL FOR CERTAIN AUTISTIC PEOPLE THAT WE CAN BE LIKE OH HOW CAN WE APPLY THIS FOR NAVIGATING CHALLENGES AND DIFFICULTIES. >> THANK YOU FOR THOSE COMMENTS. WE ARE OPEN TO OTHER SUGGESTIONS, IT HAS BEEN HISTORICALLY THE QUESTION HAS BEEN NAMED BIOLOGY FOR SOMETHING SHORT, WE CAN DO BIOLOGY AND BEHAVIOR BUT THAT STILL MIGHT NOT HAVE ENOUGH IN IT. WE ARE TRYING TO GO FOR SOMETHING NOT OVERTLY LONG BUT IF YOU HAVE A SUGGESTION OR ANYONE ELSE ON THE COMMITTEE HAS SUGGESTION OF SOMETHING SHORT TO CAPTURE MORE FEEL FREE TO SUGGEST AND IT DOESN'T HAVE TO BE DONE NOW, DONE IN THE SURVEY WHEN YOU GET IT. NEXT TO JALEN PRINCE. >> OPERATOR: I HAVE QUESTIONS TOO ABOUT DIFFERENT TYPES OF MENTAL HEALTH AND MENTAL WELLNESS. IF THERE IS A BIOLOGY WHERE SOMEONE HAS MOLECULAR SITUATION, TRYING TO BE VERY GENERAL IN THIS WITHOUT GETTING OVERLY SPECIFIC BUT SOMETHING THAT IS PART OF THEIR SYSTEM AT BIRTH THAT CAUSE MENTAL HEALTH ISSUES AS OPPOSED TO ACQUIRE MENTAL HEALTH ISSUES DUE TO STRESS LONELINESS, DEPRESSION, ISOLATION, SEEMS LIKE WE NEED TO LOOK AT THE BIOLOGY OF ONE ASPECT HOW WE CAN PREVENT MENTAL HEALTH ISSUES FROM DEVELOPING. >> MAKES SENSE. I THINK IN QUESTION 6 WE DID TRY TO BRING OUT MORE AS DINA MENTIONED THE TRAUMA ASPECT BUT SOME ACQUIRED OR ENVIRONMENTAL STRESSORS SO WE COULD MAKE SURE THERE IS SOME CROSS TALK ABOUT THOSE BETWEEN QUESTION 2 AND QUESTION 6. >> THANK YOU. >> THAT IS IMPORTANT AND CERTAINLY DOES CONTRIBUTE TO QUALITY OF LIFE ISSUES FOR PEOPLE NEXT TO STEPHEN, WRITTEN COMMENT? >> BRIEF COMMENT FROM SUSAN RIVERA. WE SHOULD CONSIDER TITLE BIOLOGY IN BEHAVIOR FOR QUESTION NUMBER 2. >> THAT WOULD BE QUICK EASY STILL NOT OVERLY LONG BUT UNDERSTANDABLE, FOR NOW THAT WILL CHANGE IT UNLESS ANYONE ELSE BRINGS ANYTHING UP DIFFERENCE. DINA. >> I WANT TO POINT OUT THE DSM 5 ELIMINATED EXECUTIVE FUNCTION AS PART OF THE CRITERIA FOR AUTISM. SO IN ORDER TO GET SERVICES TO ADDRESS EXECUTIVE FUNCTION WHICH IS NOT REALLY ALWAYS CAPTURING COGNITIVE DIFFERENCES IN AUTI A, YOU HAVE TO HAVE A SECONDARY DIAGNOSIS OF ADHD. SO I THINK I DON'T KNOW IF OR WHERE THAT MIGHT BE ADDRESSED BUT I THINK THAT WAS A HUGE FAILURE IN TERMS OF DSM V CRITERIA. I DID ALSO WANT TO CHAMPION IDEA OF TRAUMA APPEARK HERE EVEN IF WE JUST CROSS REFERENCE OVER BECAUSE WE KNOW WITH THESE INTERGENERATIONAL TRAUMA, THERE ARE HARD CORE BIOLOGICAL CHANGES IN THE NEUROLOGY WHEN SOMEONE EXPERIENCES TRAUMA, ESPECIALLY A CHRONIC TYPE OF TRAUMA WHICH LIVING WITH AUTISM IN A WORLD THAT IS NOT ADAPTABLE COULD DEFINITELY BE PART OF THAT PROFILE. . THEY HAVE BEEN -- THEY HAVE DONE A COUPLE OF STUDIES WITH THE ACES AVERSE CHILDHOOD EXPERIENCES STUDIES THIS SHOW AUTISTIC PEOPLE HAVE HUGE NUMBERS THERE. AND SO I DON'T KNOW, I THINK WE LIKE TO KEEP THINGS INTO NEAT BOXES BUT IT IS NOT ALWAYS EASY. SO I APPRECIATE THAT EFFORT BUT I WILL HAVE TO YELL LOUDER FOR TRAUMA. >> I DON'T THINK WE HAVE ANYTHING ABOUT EPIGENETICS OF TRAUMA AND WHAT NOT, I DON'T KNOW WHAT IS IN THE LITERATURE ABOUT THAT. BUT WE COULD LOOK INTO THAT AND SEE IF THERE IS A PLACE TO MAKE A MENTION OF THAT SOMEWHERE IN THE PLAN. >> THANK YOU. >> I BELIEVE I SAW PAUL WONG'S HAND UP SO I'M GOING TO GO TO PAUL. >> QUICK COMMENT TO SAY VERY GLAD TO SEE SENSORY MOTOR DIFFERENCES CALL DOWN HERE. I'M REGULARLY SURPRISED AT NUMBER OF AUTISM RESEARCHERS ALBEIT ALONG THE LIFE OF SOLO RESEARCHERS WHO DON'T APPRECIATE THAT SENSORY TARGETS ARE NOW PART OF THE DIAGNOSTIC CRY FEARIA IN DSM VERY. THIS IS AN EXAMPLE THAT -- CRITERIA. NOT GIVEN SHORT SHRIFT WHEN WE THINK ABOUT LOOKING AT BIOLOGY OF AUTISM. WE KNOW FROM PERSONAL TESTIMONY OF AUTISTIC PEOPLE THESE ISSUES ARE VERY GRAVE CONCERN FOR THEM INCLUDING AMONG THESE SUBGROUP OF AUTISTIC WHO REQUIRE LOW SUPPORT, MANY DO STILL FIND SENSORY ISSUES IN PARTICULAR ARE REALLY PROBLEMATIC, ARE AN ISSUE FOR THEM AND THEY WANT TO SEE THIS ADDRESSED. >> THANK YOU, PAUL. WE ALSO ON THE TEAM AS WE HAVE BEEN LISTENING TO COMMENTS ALONG WITH Y'ALL AND COMMITTEE HAVE HEARD A LOT ABOUT SENSORY CHALLENGES AND HOW IMPROVING THOSE IMPROVE PEOPLE'S QUALITY OF LIFE SO BEWANT TO GIVE A BIG HIGHLIGHT TO THAT AREA. NEVER EMPHASIZED BY AS MUCH PREVIOUSLY IN THE STRATEGIC PLAN, THANK YOU FOR THAT COMMENT. NEXT I WILL GO TO IVA NOVA. >> THIS IS IVA NOVA SMITH. MY COMMENT IS I THINK IT WOULD BE REALLY GOOD TO RESEARCH THE THINGS THAT CAUSE THE PROCESS DIFFERENCES IN AUTISTIC PEOPLE, LIKE NERVOUS SYSTEMS ARE VERY DIFFERENT, STUDYING NERVOUS SYSTEMS TO HELP FIGURE OUT WHAT CAUSING THE SENSORY ISSUES TO PROCESS THEM. BECAUSE FOR ME SENSORY ISSUES ARE NOT -- PAINFUL, LIKE ELECTRICITY THROUGH MY BODY. AND I WOULD LOVE TO BE RESEARCH ON WHAT ARE THE CHEMICALS THAT ARE CAUSING THAT SENSORY THING AND MAYBE THERE IS A WAY WE CAN FIND THAT -- NOT HAVING SENSORY PAIN ALL THE TIME. IT IS ACTUALLY PAIN. THANK YOU. >> THANK YOU, IVANOVA. AN IMPORTANT TOPIC AND WE WILL BE SURE TO HIGHLIGHT IT IN THE NEW PLAN. NEXT TO STEWART. >> I HAVE JUST A VERY BRIEF COMMENT. I SEE RESEARCH POLICY ISSUES IN VARIOUS ONES LISTED IN THIS QUESTION. AS WELL AS LONGITUDINAL STUDIES I WOULD SUGGEST INCLUDE MANAGE THE RESEARCH POLICY ISSUES THE INFORMED CONSENT AS CHILDREN AGE TO ADULT HOOD IN LONGITUDINAL STUDIES. >> I THINK WE HAVE SOMETHING BRIEF RELATED TO THAT BUT NOT THAT SPECIFIC TOPIC. WE WILL MAKE NOTE. THAT MIGHT ALSO CONNECT TO QUESTION 7. >> GREAT. THANKS. >> STEVEN DO YOU HAVE A WRITTEN COMMENT? >> YES, I HAVE ANOTHER COMMENT FROM JENNY. I DON'T KNOW IF PERHAPS I MIGHT HAVE MISSED IT IN THE STRATEGIC PLAN TEXT BUT CAN THERE BE A MENTION PROBABLY THROUGHOUT THIS STRATEGIC PLAN ABOUT MECHANISMS OF RISK AND (INAUDIBLE) RATHER THAN JUST RISK? >> TO ANSWER THAT QUESTION WE TRIED TO REMOVE THE WORD RISK THROUGH QUITE A BIT OF THE PLAN AND USE ALTERNATIVE LANGUAGE ABOUT PROBABILITIES AND SO FORTH. T WE DID TRY TO HIGHLIGHT RESILIENCE AND STRENGTH BASED TYPE LANGUAGE, SO WE ATTEMPTED TO DO THAT BUT WE WILL MAKE SURE THAT WE ALSO LOOK BACK WHAT WE HAVE TO SEE IF WILL IS ANYTHING MORE WE CAN DO THERE. THANK YOU FORE THAT COMMENT. >> RESEARCH POLICY LIST THERE, AND PIGGY BACKING A LITTLE BIT ON DR. SHAPIRO'S OBSERVATION, THERE IS COMMUNITY PARTICIPATORY RESEARCH BEING DONE, I WANT TO LET THE COMMITTEE KNOW I'M PART OF MAYBE ONE OF THREE PROJECTS GOING ON LOOKING AT REDESIGNING ETHICS TRAINING FOR PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES SO THEY CAN MAKE GOOD ETHICS CONTRIBUTIONS IN COMMUNITY PARTICIPATORY RESEARCH. SO I THINK SOMEWHAT RELATED TO BEING ABLE TO BE -- TO GIVE AFFIRMATIVE CONSENT AS CHILDREN AGE. ETHIC TRAINING FOR INDIVIDUALS CONTRIBUTING TO COMMUNITY PARTICIPATORY RESEARCH VALUE DATES THEY HAVE SOMETHING TO OFFER AND INTRODUCE IT IS LIVED EXPERIENCE INTO RESEARCH. IT ALSO EMPOWERS THEM TO BE A VERY STRONG CONTRIBUTING FORCE IN THE RESEARCH UNDER CONDITIONS. >> THANK YOU FOR THAT. YES, COMMUNITY BASED PARTICIPATORY RESEARCH IS SOMETHING THERE ARE LOTS OF ISSUES WE ARE TRYING TO HIGHLIGHT A DIFFERENT PLAN SO THAT IS ONE OF THEM AND WE WILL TAKE THAT INTO ACCOUNT. >> MORE COMMENTS ABOUT QUESTION 2 BIOLOGY AND BEHAVIOR. SCOTT. >> THANKS, SUSAN. I CONCUR WITH THE EMPHASIS ON FOR INSTANCE WHAT WAS MENTIONED ON COMMUNITY BASED PARTICIPATORY RESEARCH PARTICIPATORY ACTION RESEARCH CBPR PAR THAT I HOPE CAN BE EMBRACED EMPHASIZE ALL ACROSS THE BOARD BECAUSE I THINK IT HELPS A LOT TO HAVE AUTISTIC PEOPLE AND FAMILY MEMBERS AS PARTNERS ON THAT RESEARCH PROCESS TO HELP SHAPE PRACTICES AND POLICY AND I THINK THAT IS ANOTHER AREA THAT WOULD BE HELPFUL TO EMPHASIZE UNDER STUDY TOO, THAT IS THERE JUST NOT ADOPTING CBPR -- I THINK THAT SOMETHING, THE STRATEGIC PLAN HAS LIMITATIONS I GUESS IN HOW IT CONNECTS BACK TO WHAT IS OPENLY FUNDED BY NIH AND OTHER AGENCIES, THESE ARE MORE RECOMMENDATIONS OR SUGGESTIONS THAN ANYTHING BUT WOULD BE HELPFUL IF MORE RESEARCH STUDIES ACROSS THE BOARD COULD BE ADOPTING CBPR AND PAR AND JUST TO EMPHASIZE THAT STRONGLY AS SOMETHING THAT WOULD HELP ENHANCE RESEARCH PROCESS AND QUALITY OF RESEARCH. THAT IS OUT THERE. I WANT TO MENTION BRIEFLY AS A ALTERNATIVE SUGGESTION FOR THE TITLE OF THE SECTION MAYBE SOMETHING ABOUT DEVELOPMENT LIKE BIOLOGY DEVELOPMENT AND BIOLOGY AND HUMAN DEVELOPMENT BECAUSE I THINK REALLY THE SECTION IS GROWING TO MORE BIOLOGY, THE HUMAN DEVELOPMENT OF AUTISTIC PEOPLE, IT IS ESPECIALLY EMPHASIZE CHILDHOOD ADOLESCENT AND FACT THERE IS MORE FOCUS ON ADULTS IN QUESTION 6 BUT I THINK THAT HUMAN DEVELOPMENT ELEMENT AS FAR AS BRAIN DEVELOPMENT SENSORY DEVELOPMENT MOTOR DEVELOPMENT AND SUPPORTS AND SERVICES THAT CAN BE HELPFUL FOR THAT AS FOLKS HAVE THOSE DIFFERENCES IN HUMAN DEVELOPMENT ON THAT, SO MAYBE THAT IS SOMETHING THAT COULD BE TINKERED IS THAT ELEMENT OF THE HUMAN DEVELOPMENT IN THIS SECTION THAT GOES BEYOND THE BIOLOGY. I WORRY ON THE BEHAVIOR TERM, THERE IS ASSOCIATION WITH NEGATIVE ASPECT THAT FOLKS SEE AS NON-TYPICAL AREAS, I SOMETIMES HAVE BEEN AT CONFERENCES AND OTHER AREAS WHERE FOLKS POINT OUT IT IS CRYING OR WHATEVER SCREAMING YELLING, SOMETIMES STEREO TYPES OR STIGMA AROUND AUTISTIC PEOPLE AND GENERALIZATIONS THAT GET LUMPED INTO THIS LOADED TERM USE OF THE TERM BEHAVIOR. THAT IS ONE REASON I HAVE REFRAINED FROM USING THE TERM IN MANY RECENT YEARS AND TALKED ABOUT ACTIONS AND COMMUNICATION AND LIVED EXPERIENCE OF FOLKS BECAUSE OF THE WORD BEHAVIOR ACQUIRED SUCH NEGATIVE USE AT TIMES ON ADDRESSING THINGS SOMETIMES STEREOTYPES AND STIGMA FROM THE BIASES AMONG NON-AUTISTIC PEOPLE AND HOW THEY FEEL ABOUT AND FORESEE THEIR WORLD VIEW ABOUT AUTISTIC PEOPLE AS WHEN WE ARE CHILDREN ADOLESCENTS AND ADULTS >> THANK YOU. TALKING TO THE TEAM ABOUT WHAT WE CAN DO WITH THE TITLE I RECOGNIZE BIOLOGY IS -- IT DOESN'T NECESSARILY CONNECT PEOPLE TO THESE DIFFERENT SUB TOPICS AS EASILY BUT TRY TO SEE WHAT WE CAN COME UP WITH SHORT ENOUGH THAT IT IS NOT OVERLY CUMBERSOME. WE WILL GO TO MATTHEW SEIGEL. >> THANKS SUSAN. SO PRIOR TO THE MOST RECENT COMMENT THAT WAS SUGGESTING BEHAVIOR SHOULD NOT BE IN THE TITLE, IF IT IS IN THE TITLE AND ALSO NOT RECALLING IF IT IS COVERED IN DIFFERENT SECTION OF THE STRATEGIC PLAN BUT IF IT IS IN THE TITLE OR SOMEWHERE ELSE IN THE STRATEGIC PLAN, IT DID QUEUE ME TO NOTE THAT THE IACC DID A WORK SHOP SPECIAL SESSION COUPLE OF YEARS AGO ON BEHAVIOR IN AUTISM AND SPECIFICALLY ON WHATEVER YOUR PREFERRED TERM MIGHT BE CHALLENGING BEHAVIOR OR BEHAVIOR THAT CHALLENGES OR OTHER TERMS PEOPLE USE. THAT IS AN AREA THAT IS UNDERRESEARCHED IN AUTISM AND WOULD BE APPROPRIATE AN AREA THAT CAUSES MAJOR DIFFICULTIES FOR SOME INDIVIDUAL, AND THE SYSTEMS AROUND THEM. SO COULD BE AREA STRATEGIC PLAN CALLS FOR MORE RESEARCH TO FOCUS ON, THAT CERTAINLY THE OUTPUT OF THAT WORKSHOP THAT IS DONE COUPLE OF YEARS AGO AS I RECALL. THANK YOU. >> THANK YOU, YES. FOCUS ON INDIVIDUALS WITH HIGHER SUPPORT NEEDS AND WHAT THEY MIGHT NEED TO GET FROM RESEARCH AND SERVICES IS A THEME WOVEN IN PARTS OF THE PLAN AND IT COULD HAVE BEEN ON THIS LIST OF TOPICS HERE, I BELIEVE THERE SOMETHING ABOUT THAT HERE. BUT WE WILL MAKE SURE WE EMPHASIZE AS WE HAVE HEARD ABOUT THAT FROM THE COMMUNITY AND THE COMMITTEE. THANK YOU FOR MENTIONING THAT. WE HAVE OTHER COMMENTS ABOUT THIS. STEVEN. >> HI, THERE, IN REGARDS TO THE CONVERSATION ABOUT THE TITLE QUESTION 2 HARRY HAS SUGGESTION TO NOT USE BEHAVIOR BECAUSE IT HAS A NEGATIVE CONNOTATION, HE SUGGESTED HOW SCIENCE AND DEVELOPMENT. THANK YOU. I KNOW WE HAVE SOME PEOPLE ON THE CALL THAT MAY BE MANAGING WORK ON THIS BIOLOGICAL SCIENCES COGNITIVE SCIENCES AREA. DO YOU HAVE ANY COMMENTS OF THINGS YOU WOULD LIKE TO SEE IN THIS SECTION. ANYONE ELSE? JUST LOOKING DOWN THE LIST FOR EXAMPLE I KNOW WE HAVE NICOLE WILLIAMS IN YOUR PORTFOLIO YOU HAVE SOME GRANTS THAT COVER THIS AREA. >> YES, SUSAN. I WAS GOING TO CHAT. ALL THE BULLET POINTS HERE ARE ALREADY ENCOMPASS OUR AREAS OF INTEREST THAT WE OFFER ESPECIALLY A CURRENT FISCAL YEAR SO WE ARE COVERED HERE. >> GREAT. THANK YOU. ANYTHING ELSE ANYONE ELSE SUSAN RIVERA. >> I DON'T HAVE ANY BULLET POINTS TO ADD BUT REACTING TO SUGGESTIONS TO CHANGE THE WORD BEHAVIOR. I WANTED TO THROW IN AN ALTERNATIVE THAT IS LIVED EXPERIENCES. BIOLOGY AND LIVED EXPERIENCES. ONE MORE WORD BUT MAYBE BETTER ENCAPSULATES SOME OF THE THINGS THAT ARE NOT TRADITIONALLY THOUGHT OF AS BIOLOGY ON THIS LIST. >> THAT IS A TOUGH ONE BECAUSE WE HAVE SO MUCH ABOUT LIVED EXPERIENCE IN QUESTION 6 THAT I WOULDN'T WANT TO GET CONFUSED AND FOR PEOPLE TO EXPECT TO SEE PEOPLE EXPERIENCES WITH FINDING HOUSING OR SOMETHING IN HERE THAT IS NOT IN THIS SECTION. >> I WANT TO TRY TO FIND ALTERNATIVE BECAUSE I DON'T THINK BIOLOGY ON ITS OWN DOES US ANY GOOD. DOES A DISSERVICE I THINK SO JUST TRYING TO BRAINSTORM WE CAN INDICATE THESE THINGS ARE BEHAVIORS AND NOT NECESSARILY BIOLOGY. WITHOUT POINT WELL TAKEN WITHOUT BRINGING UP THAT NEGATIVE CONNOTATION. >> WHAT ABOUT SAY BIOLOGY COGNITION AND COMMUNICATION OR SOMETHING LIKE THAT? THREE WORDS BUT STILL SHORT. IS THAT IMPROVEMENT OR NOT REALLY? >> IT IS WORTH CONSIDERING. >> BOTH COMMUNICATION RELATED RESEARCH AND COGNITIVE RESEARCH WERE TWO AREAS THAT BACK IN THE JANUARY MEETING SOMEONE BROUGHT UP OH YOU DON'T HAVE ANYTHING IN THE PLAN ABOUT COMMUNICATION AND THERE ACTUALLY IS RESEARCH ON THAT TOPIC AND THIS SECTION BY THE TITLE BIOLOGY IT WAS HARD TO TELL. SO WE CAN CONSIDER THAT AS WELL. YOU CAN CONTINUE TO SEND US COMMENTS IF ANYONE COMES UP WITH A GREAT IDEA ON THAT. MATTHEW, COMMENT? THAT HAND WENT DOWN. >> ALICIA HOLIDAY, I DON'T KNOW IF YOU HAVE ANYTHING ELSE MATTHEW DID YOU HAVE SOMETHING? >> I'M SORRY I TOOK MY HAND DOWN. I DID WANT TO COMMENT ON THIS FOCUS ON LANGUAGE AND ASSUMPTIONS ABOUT CONNOTATIONS. SO THE TERM BEHAVIORS ENTIRELY NEUTRAL TERM. GIVING A VALENTINE'S CARD TO YOUR ROMANTIC OTHER IS BEHAVIOR, MOST OF US THINK POSITIVE BEHAVIOR SO THE TERM ITSELF DOESN'T HAVE A CONNOTATION AND WE CAN COME UP WITH PROPOSALS OF THINGS THAT -- I CAN PROPOSE SOMETHING HAS NEGATIVE OR POSITIVE MUTUAL CONNOTATION SO WE SHOULD BE CONSCIOUS RULING OUT ENTIRE TERMS AND PIECES OF LANGUAGE, I NOT TRYING TO INVALIDATE ANY EXPERIENCE SCOTT HAS HAD BUT POINTING OUT THERE ARE MULTIPLE EXPERIENCES AND SO I THINK THIS COMMITTEE I WANT TO NOTE THE PAST YEAR SPENT A LOT OF TIME TALKING ABOUT LANGUAGE AND I THINK THAT SOMETIMES THAT GETS IN THE WAY OF OUR FOCUSING ON THE WHAT WE ALL I THINK ALSO BRING FORWARD WHICH IS THE SIGNIFICANT AND ONGOING NEEDS OF PEOPLE WITH AUTISM ACROSS THE SPECTRUM. I'M NOT VOTING FOR BEHAVIOR IN THE TITLE, IT DOESN'T MATTER TO ME BUT I AM MORE REFLECTING ON THIS GENERAL THEME WE HAVE OF I THINK ATTRIBUTING THINGS TO WORDS THAT MAY OR MAY NOT BE THERE. >> APPRECIATE THAT COMMENT. CAN TAKE THAT INTO CONSIDERATION. >> I LEE SHAH, I KNOW YOU HAVE A LOT OF WORK IN THIS AREA. >> I AGREE WITH MATT. SECOND WHAT DR. STEIGLE SAID WHOLEHEARTEDLY. I COME FROM A PLACE OF IF IT IS OFFENSIVE TO ANYONE THEN WE WANT TO AVOID USING IT. BUT WORDS LIKE BEHAVIOR SHOULDN'T BE INHERENTLY. THEY ARE NOT. THERE'S NOT THE WORD BEHAVIOR. I DON'T THINK PREFERENCE IF WE USE THE WORD BGY BEHAVI BEHAVIOR. I ALSO THINK WE NEED TO BE MINDFUL THAT WHEN WE USE WORDS LIKE DIFFERENCES. I AGREE SENSORY MOTOR AND COGNITIVE COMMUNICATION, WE SHOULD FOCUS ON THOSE. DIFFERENTLY, IT'S NOT A STRONG OF A WORD AS I WOULD USE, TO ME IT DOESN'T PUT FORTH URGENCY THAT THIS COMMUNITY NEEDS TO HAVE IN TERMS OF EXPRESSING URGENCY AND SOME OF THE REALLY SITUATIONS THAT ARE NOT JUST DIFFERENCES, THEY ARE PROFOUND DISABILITY. SO I'M OKAY WITH USING THE WORD DIFFERENCES BUT I WANT TO MAKE SURE THAT WE CONVEY ALL THESE SECTIONS THERE IS A SPECTRUM. DIFFERENCES OF WHAT WE ARE, WE SHOULD BE MORE INCLUSIVE OF LANGUAGE NOT LESS INCLUSIVE OF LANGUAGE GIVEN HETEROGENEITY ACROSS THE SPECTRUM. >> THANK YOU FOR THOSE COMMENTS. KEEP THAT IN MIND. STEVEN, WRITTEN COMMENT >> I HAVE A COMMENT FROM FROM DR. PAUL WONG. FOR ME THE TERM IS NEUTRAL. THERE IS A SCIENCE CALLED BRAIN AND BEHAVIOR. THERE IS A SCIENCE CALLED BRAIN AND BEHAVIOR FOUNDATION. SCIENCE EXPERIENCE IN THE CATEGORY HUMAN COGNITION AND BEHAVIOR. THIS IS BRAIN AND COGNITION ARE NEUTRAL FOR ME, SO IS THE WORD BEHAVIOR >> PAUL, I RECOGNIZE THAT, I THOUGHT OF THE SAME FOUNDATION WHEN THAT CAME UP. SO WE WILL GIVE THAT SOME THOUGHT OR MAYBE IF WE MADE IT THREE WORDS, IF BEHAVIOR WAS ONE OF THREE WORDS IT WOULDN'T SOUND AS NEGATIVE TO CERTAIN PEOPLE. WE WILL FIGURE IT OUT, WE WILL COME UP WITH IDEAS AND PITCH THAT THE NEXT TIME. SUSAN RIVERA, ANYTHING ELSE TO SAY ABOUT THAT? >> ONLY THAT I WAS THE ONE THAT MADE THE INITIAL SUGGESTION BIOLOGY BEHAVIOR. IT IS ABSOLUTELY NEUTRAL TO ME AS WELL AS A COGNITIVE SCIENTIST. BUT I DO THINK THAT IT IS WORTHYING ABOUT WHETHER WE LOSE NOTHING BY PUTTING IN OTHER WORDS THAT DON'T TRIGGER THAT FOR SOME CONSTITUENTS. I'M JUST -- I THINK IT IS WORTH BRAINSTORMING. I LIKE THE IDEA OF NOT THROWING THE BABY OUT WITH THE BATH WATER. MAYBE BEHAVIOR CAN BE IN THERE. IF WE HAVE A NUMBER OF MEMBERS OF OUR IACC COMMITTEE WHO ARE SAYING THAT IS TRIGGERS A NEGATIVE CONNOTATION FOR THEM, IS THERE A WAY THAT WE CAN THINK OF OTHER WORDS THAT DO THE SAME SERVICE? >> WE CAN DO BIOLOGY BRAIN BEHAVIOR IF PART OF SERIES OF THREE DOESN'T FOCUS ON ANYONE. SO I DON'T KNOW WE HAVE TO COME UP WITH SOME DIFFERENT ONES BUT CONTINUE TO PITCH THINGS IF YOU THINK OF ANYTHING FOR THAT. DINA. >> SUSAN, I WANT TO THANK YOU. PHO BEING SENSITIZED. I NOTICE NONE OF THE PEOPLE WHO FIND BEHAVIOR NEUTRAL ARE AUTISTIC PEOPLE. IF YOU WERE TO TALLY THE IACC MEMBERS ON THE SPECTRUM BEHAVIOR HAS A LOT OF HISTORICAL NEGATIVE CONNOTATIONS FOR US. I AGREE WITH ALICE -- ALICIA THAT DIFFERENCES IS TOO LOW BALL, I HAVE NEVER LIKED SOFT SELLING THE LANGUAGE AROUND THESE ISSUES. I WOULD ENCOURAGE US TO LOOK VERY HONESTLY AT THE WORD DISABILITY OR IMPAIRMENT I THINK ALSO DEVELOPMENT IS A NEUTRAL WORD WITH THAT COVERS THIS AS WELL, THAT WAS ACTUALLY JENNY'S SUGGESTION. I DON'T THINK IT'S MUTUAL WORK FOR THE COMMUNITY IN TERMS OF WHAT WE ARE TALKING ABOUT BIOLOGY AND PEOPLE BEING HARD WIRED. I DON'T KNOW, I HAVE TO SAY THAT STRONGLY. AND AGAIN SUSAN, I APPRECIATE YOUR BEING SENSITIVE TO THIS. APPRECIATE IT VERY MUCH. >> SENSORY MOTOR DEVELOPMENT AND COGNITIVE AND COMMUNICATION DEVELOPMENT PROBABLY WOULD WORK SO THAT SOMETHING WE CAN CHANGE THAT TO. I THINK SEX AND GENDER DIFFERENCES STILL SOUNDS BETTER, I DON'T THINK DEVELOPMENT MAKES SENSE THERE. SCOTT, DO YOU HAVE A COMMENT? >> YEAH, THANKS, SUSAN. SO I CON -- REFER TO DISABILITY, OBVIOUSLY AUTISM IS A DISABILITY AND SIGNIFICANT DISABILITY AS RECOGNIZED UNDER OTHER LAWS TOO LIKE REHABILITATION ACT FOR INSTANCE AND I DO CONCUR THERE MAYBE PLACES FOR INSTANCE TO REFER TO LANGUAGE LIKE DIFFERENCES BUT FOR INSTANCE UNDEFER GOVERNMENT LAWS LIKE FEDERAL LAWS STATE LAWS ET CETERA, DIFFERENCES COULD MEAN EYE COLOR OR ET CETERA THAT DOESN'T HAVE THE SAME STANDING IN SOCIETY AS FAR AS NEED FOR SUPPORT AND SERVICES, AS FAR AS DISABILITY. WHEN I THINK OF DISABILITY I THINK OF IT FROM THE SOCIAL MODEL MORE IN TERMS OF THE NOT JUST CHALLENGES WITHIN THE PERSON ITSELF ALSO BARRIERS WITHIN THEIR ACCESS TO SUPPORTS AND SERVICES TO HELP THEM THRIVE AND BE EMPOWERED AND BE EMPOWEREDDED TO ARE HAVE SUCCESS AND HIGH QUALITY OF LIFE AND FULLY INCLUDED. I DO THINK THAT IT IS IMPORTANT, I THINK I WOULD ASSERT AND PERHAPS DISAGREE FROM FOLKS THAT THE LANGUAGE IS REALLY IMPORTANT FOR THE COMMITTEE, IT IS REALLY IMPORTANT FOR THE STAKEHOLDERS WHO ARE LOOKING AT STRATEGIC PLAN WHICH INCLUDES RESEARCHERS BUT NOT LIMITED TO RESEARCHERS WITH FOLKS IN POLICY, SERVICE PROVISION AUTISTIC PEOPLE AND FAMILIES. PEOPLE READ THE STRATEGIC PLAN AND MAKE USE OF IT AND A LOT OF FOLKS FOR GOVERNMENT HELPS SHAPE DIRECTION OF WHAT IS FOCUSED ON FOR AUTISM UNDER THE PRIORITIES OF THE OFFICE OF THE CARES ACT. SO I WANT TO RE-EMPHASIZE THAT I THINK LANGUAGE HAS A MAJOR IMPORTANT PLACE AND IT IS SOMETHING STAKEHOLDER COMMUNITIES CONTINUALLY BRING OUT I NOTICE VERY, VERY IMPORTANT TO AUTISTIC PEOPLE, OUR FAMILIES AND WHEN KIDS THAT ARE BIASES ONCE YOU CONSIDER BIASES NOT JUST IN TERMS OF HOW RESEARCHERS USE THE TERMS BUT ALSO WHAT THEY HAVE ACQUIRED AMONG SOCIETY THAT IS WHEN I SAY THINGS LIKE BEHAVIOR, THERE IS A MAJOR HISTORY AS DINA AND OTHER MENTIONED, HOW BEHAVIOR AMONG THE LAST SEVERAL DECADES AND WHAT THAT IS MEANT FOR AUTISTIC PEOPLE AND DISTINGUISHING ON TYPICAL FORMS OF INTERACTION AND WHAT IS THOUGHT OF AS BEHAVIOR AT TIMES SO I JUST WOULD BE CAREFUL TO ASSUME BECAUSE SOMETHING IS PREVALENCE AMONG RESEARCH IMMUNITIES WITH. SOL OF O THESE TERMS THAT DIMINISHES THE EXTENT WHERE THERE MAYBE A STIGMA ELEMENTS FOR THE TERM AMONG THE COMMUNITY THAT IS ALSO THE CASE FOR SOME OF THESE OTHER TERMS IN THE STRATEGIC PLAN FOR INSTANCE WHERE WE CAN CONSIDER WHERE WHETHER COULD BE A NEUTRAL ELEMENT AS FAR AS FOR INSTANCE CHARACTERISTICS AND TRAITS OF AUTISM IN THIS SECTION, SOME OTHER AREAS INSTEAD OF FOCUSES LIKE SIGNS OR SYMPTOMS WHICH DEFINITIVELY HAVE ACQUIRED DEFINITELY A STIGMA TO THEM AND DEFINITELY NON-NEUTRAL. IN POST DEFINITELY A NEGATIVE ELEMENT TO THEM VERSUS TRAITS AND CHARACTERISTICS IS MORE NEUTRAL. THERE ARE RESOURCES I COULD SEND ALSO SUSAN AS FAR AS ARTICLES THAT HAVE COME OUT RECENTLY ON STIGMA AND LANGUAGE FOR INSTANCE IN THE RESEARCH COMMUNITY, AND ADDRESSING THESE AREAS WITH LANGUAGE THAT I CAN SHARE THAT RECENTLY BEEN PUBLISHED IN THE LAST COUPLE OR FEW YEARS HELPFUL TO SIGHT. >> THANKS SCOTT WE HAVE A FILE GOING ON THOSE, IF YOU HAVE ANY ADDITIONAL ONES. WE HAVE TRYING TO KEEP TRACK AND WE DID ACTUALLY MAKE AN EFFORT TO USE WORDS LIKE CHARACTERISTICS AND TRAITS THAT ARE MORE NEUTRAL THROUGHOUT THE PLAN. WE WILL LOOK AT THOSE IN THIS CONTEXT, THIS QUESTION IS REALLY A LOT OF IT IS BASIC SCIENCE AND SOME OF IT IS CELL BASED RESEARCH AND SOME OF IT IS IN HUMAN SAY SENSORY MOTOR DISABILITIES MIGHT NOT MAKE SENSE IF YOU ARE DOING A CELL BASED EXPERIMENT BUT DEVELOPMENT APPLIES TO BOTH. SO WE WILL TAKE THAT INTO CONSIDERATION BUT DISABILITY COMES UP IN OTHER PARTS OF THE PLAN. WE WILL TAKE ANOTHER COUPLE OF QUESTIONS AND OTHER FEW QUESTIONS THEN TO OUR BREAK. THIS DISCUSSION IS HELPFUL AND IT IS WHY WE WANTED TO O HAVE THIS MEETING SO WE CAN GET THIS CONTEXT TO TRY TO OPTIMIZE THE PLAN. IVA NOVA. >> I JUST WANT TO TELL YOU HISTORY, THERE IS LOT OF HISTORICAL WORDS, ONE TIME NEUTRAL AND WORDS TO TRY TO HELP PEOPLE, BACK IN THE 1950s, THE WORD MENTAL RETARDATION WAS USED TO REPLACE THE WORD FEEBLE MINDEDNESS. THEY TRIED TO MAKE IT NEUTRAL BUT BECAUSE OF STIGMA MAKE IT POLICIES THAT STILL EFFECT PEOPLE WITH INTELLECTUAL DEVELOPMENTAL DISABILITIES TODAY, THESE WORDS ARE NO LONGER NEUTRAL. THEY FOLLOW STIGMA AND SOMETIMES THE COMMUNITY MEMBERS ARE TRIGGERED BY THESE WORDS. SO THE WORDS BEHAVIOR THAT COULD BE TRIGGERING FOR SELF-ADVOCATES BECAUSE WHEN WE HEAR WORD BEHAVIOR IT MEANS THE WAY WE -- PROBLEM BEHAVIOR SO IT IS USED IN A WAY THAT IS NEGATIVE AND NOT NEUTRAL FOR US. AS AUTISTIC PEOPLE. MAY NOT BE USED THAT WAY FOR OTHER PEOPLE AND MAYBE NEUTRAL FOR OTHER PEOPLE, BUT AUTISTIC PEOPLE IT DOESN'T STAY NEUTRAL. SO THAT IS WHY IF IT DOESN'T HAVE NEUTRAL STATUS BECAUSE THE STIGMA THAT THE WORD THE SOCIETY HAS ALLOWED TO HAPPEN. AND NEGATIVE POLICIES FOR AUTISTIC PEOPLE HAVE BEEN SEEN IN THE NAME OF THE WORD BEHAVIORS LIKE THE WORD SMR WAS USED AGAINST PEOPLE WITH INTELLECTUAL DISABILITIES. (INAUDIBLE) INSTITUTION AND STERILIZE US AGAINST OUR WILL. THESE WORDS MAYBE NEUTRAL FOR THE PEOPLE BUT NOT FOR US AND THEY MAY HAVE HURT US IN THE PAST AND HISTORICALLY IN MANY WAYS. SO THAT IS MY HISTORICAL PERSPECTIVE ON THAT. THANK YOU. >> THANK YOU, IVA NOVA FOR SHARING THAT BACKGROUND. WE APPRECIATE IT. STEVEN, DO YOU HAVE A WRITTEN COMMENT? >> TWO COMMENTS ONE FROM DINA. SHE TALKS ABOUT THE HISTORY OF BEHAVIOR, THE WORD BEHAVIOR, LEADING TO INCARCERATION, INSTITUTIONALIZATION AND/OR CONVERSION THERAPY FOR LGBTQAI INDIVIDUALS. AND THEN ALICIA HOLIDAY SAYS SHE IS GOING TO MAKE THE SUGGESTION WE ALL BE FLEXIBLE WITH LANGUAGE DEPENDING ON THE SECTION OF THE STRATEGIC PLAN, THERE IS NOTHING STIGMATIZING ABOUT THE WORD BEHAVIOR IN QUESTION NUMBER 2. >> THANK YOU FOR THOSE COMMENTS. I KNOW THAT JOE PIVEN IS LOGGED ON, I DON'T KNOW JOE IF YOU ARE IN A POSITION TO TALK AT ALL BUT I KNOW YOU WORK IN THIS AREA OF BIOLOGY AND I HAVEN'T HEARD FROM YOU SO WANTED TO GIVE YOU A CHANCE IF YOU WANT TO SAY ANYTHING? >> CAN YOU HEAR ME? >> YES I CAN HEAR YOU. >> I DON'T KNOW THAT I CAN SAY ANYTHING CONSTRUCTIVE HERE. I TEND TO THINK MAYBE MORE FUNDAMENTALLY WHAT WE ARE TRYING TO ACCOMPLISH WITH THIS TOPIC AREA. I THINK ABOUT MECHANISMS AND ETIOLOGY AND THOSE KINDS OF TERMS. THEY HAVEN'T COME UP IN THE CONVERSATION SO NOT SURE -- SOMETHING IN THE TITLE BIOLOGY. I THINK THE MAIN POINT WOULD BE TO STEP BACK AND SAY WHAT ARE WE TRYING TO ACCOMPLISH WITH THIS -- (INAUDIBLE) RESEARCH. >> DID YOU SEE ANYTHING -- ARE THERE ANY MAJOR TOPICS OR SHIFTS IN THE FIELD THAT YOU WOULD LIKE TO SEE IN THIS SECTION THAT WE HAVEN'T TALKED ABOUT ALREADY IN THIS CONVERSATION OR THAT IS NOT ON THE SLIDE? ANYTHING FROM YOUR EXPERIENCE NEEDS TO BE SAID THAT MIGHT NOT HAVE BEEN PICKED UP IN 2017? >> PROBABLY WANT TO THINK ABOUT IT LONGER TO ANSWER THAT QUESTION. MORE THOUGHTFULLY BUT MY FIRST IMPRESSION IS THAT THIS IS SEEMS ADEQUATE. >> WE DO HAVE THAT SURVEY THAT WE ARE GOING TO SEND OUT AND Y'ALL WILL HAVE A CHANCE TO REFLECT ON THE WRITTEN DOCUMENTS AS WEL WELL. SO IF YOU WANT TO E MORE TIME, I WANT TO MAKE SURE EVERYONE HAD AN OPPORTUNITY. SO EVERYONE IS DOING A GREAT JOB OF KEEPING YOUR COMMENTS BRIEF AND PASSING THE BATON. SO WE ARE DOING WELL ON TIME. READY TO GO TO BREAK. WE CAN HAVE A FEW EXTRA MINUTES SO IF WE WANT TO COME BACK AT THREE O'CLOCK WE CAN PICK UP ON QUESTION 3. GOOD JOB EVERYONE. THIS HAS BEEN SUPER HELPFUL IN TERMS OF TALL DIFFERENT PERSPECTIVES YOU HAVE SHARED AND LOOK FORWARD TO CONTINUING IN A FEW MINUTES. TAKE YOUR WELL EARNED BREAK. THANK YOU. >>WELCOME BACK, IT'S THREE O'CLOCK. TIME TO START THE NEXT SESSION OF TODAY'S MEETING. WE WILL BE TALKING ABOUT QUESTION THREE OF THE STRATEGIC PLAN WHICH IS ON GENETIC AND ENVIRONMENTAL FACTORS. THE PROPOSED QUESTION 3 TEXT, WHAT ARE GENETIC ENVIRONMENTAL FACTORS THAT CONTRIBUTE TO AUTISM? SO THE TOPICS THAT ARE INCLUDED WITHIN THIS QUESTION ARE GENETIC FACTORS, ENVIRONMENTAL FACTORS, GENE ENVIRONMENT SWEAR ACTIONS AND EPIGENETICS. STUDIES IN DIVERSE POPULATIONS. RESOURCES TO ACCELERATE RESEARCH ON GENETIC ENVIRONMENTAL FACTORS. AND POLICY AND ETHICAL IMPLICATIONS OF ADVANCES IN GENETIC AND ENVIRONMENTAL SCIENCE. AS A NOTE ON THIS TOPIC WE DID HEAR FROM RFI AND MEMBERS OF THE COMMITTEE THE IMPORTANT OF OTHER ASPECTS OF THE EXPERIENCE OF PEOPLE ON THE AUTISM SPECTRUM AND MORE TOUCHES ON SOCIAL DETERMINANTS OF HEALTH AND TOPICS LIKE THAT. T AND OUR TEAM LOOKED TO TRY TO INCORPORATE THAT HERE BUT IT DIDN'T REALLY MIX THAT WELL WITH THESE TOPICS AND SO WE PUT THAT INTO QUESTION 6 ESPECIALLY SOCIAL SCIENCES RESEARCH TYPES OF TOPICS. DIDN'T WANT YOU TO THINK THAT HAD BEEN MISSED BUT WE KEPT IT IN A SEPARATE PLACE. WE KEPT THIS ONE STILL FOCUSED ON A LITTLE MORE OF THE BIOLOGICAL ASPECT OF AUTISM TO TRY NOT TO MIX IT UP WHEN WE USE THE QUESTION TO TRACK RESEARCH FOR PORTFOLIO ANALYSIS BUT OUR LOOKING FORWARD TO HEARING FROM YOU ABOUT WHAT YOUR THOUGHTS AND OPINIONS ARE ABOUT THIS. SO I WILL USE THE SAME TWO DISCUSSION QUESTIONS, ARE THERE ANY OTHER IMPORTANT TOPICS OR POINTS WE NEED TO INCLUDE OR POINTS THAT HAVE TO DO WITH THESE DIFFERENT TOPICS MENTIONED HERE. AND HAVE THERE BEEN SIGNIFICANT CHANGES IN THE FIELD THAT IMPACT THE DIRECTION WE SHOULD TAKE IN THE STRATEGIC PLAN. OPEN THIS UP TO COMMENTS. >> HI, SUSAN, HI, EVERYONE. JUST WANTED TO ASK TO THE POINT YOU WERE DESCRIBING ABOUT THE SOCIAL DETRIMENTS OF HEALTH, IS THE PLAN TO BRIEFLY EXPLAIN THAT IN THIS SECTION? I HAVEN'T HAD A CHANCE TO REVIEW BUT WONDERING IF PEOPLE SEE STUDIES IN DIVERSE POPULATIONS IF THAT MIGHT I DON'T WANT TO USE THE WORD TRIGGER BUT MAKE PEOPLE THINK TO THAT? WE HAVE SOME DISCUSSION ABOUT THAT EARLY ON. AND I THINK IT MIGHT BE HELPFUL IF YOU HAVEN'T THOUGHT ABOUT THAT BE CURIOUS TO KNOW WHAT OTHERS THINK ABOUT INCLUDING JUST A BRIEF SENTENCE OR TWO ABOUT WHY -- WE PLAN TO ADDRESS THIS BUT THIS IS WHY WE PLAN TO ADDRESS IT WITH REGARD TO QUESTION NUMBER 6 VERSUS HERE. >> IT IS POSSIBLE. WE WILL SEE HOW IT PLAYS OUT IN THE PLAN. IT MAY NOT NEED EXPLANATION BECAUSE PEOPLE SEE THE ENTIRE STRUCTURE OF THE PLAN THEY WILL FIGURE THAT OUT THEMSELVES BUT IF NEEDED WE COULD ALWAYS REFERENCE IT BUT IT WAS NEVER PART OF THIS CHAPTER SO PEOPLE WON'T BE EXPECTING TO SEE IT THERE NECESSARILY. WE DO -- DID WANT TO MAKE SURE WE SAID SOMETHING ABOUT SOCIAL SCIENCES RESEARCH BECAUSE I THINK IN PREVIOUS PLANS THAT REALLY HASN'T COME UP AND I KNOW WE HAVE SOME SOCIAL SCIENCE RESEARCHERS ON THE COMMITTEE WHO CONTRIBUTED TO COMMENTS. WANTED YOU TO KNOW WE DID TAKE THAT INTO ACCOUNT. >> THANK YOU FOR THAT. >> ELAINE, DO YOU HAVE A COMMENT? >> YES, THANK YOU. I SKIMMED LIKE SUPER FAST SO WHAT I DID NOTICE IN I'M NOT SURE IF YOU WANT TO THINK ABOUT THIS, BUT IN ADDITION TO THE WAY IT IS WRITTEN NOW, SKIMMED VERY QUICKLY, ABOUT HOW ENVIRONMENTAL GENETIC FACTORS INFLUENCE DEVELOPMENT OF AUTISM ALTHOUGH YOUR OBJECTIVE TO YOU SAY DEVELOPMENT AND PROGRESSION, SO I'M THINKING ABOUT THIS COMING FROM A REGULATORY AGENCY, SO FROM A POLICY PERSPECTIVE AND THE AUTHORITY THAT WE HAVE WHETHER OR NOT IT IS APPROPRIATE TO ADD SOME LANGUAGE OR THINKING ABOUT A ASDS SENSITIVE VULNERABLE AS BEING SENSITIVE VULNERABLE INDIVIDUALS TO ENVIRONMENTAL FACTORS FOR EXAMPLE CHEMICAL EXPOSURES AND I APPRECIATE YOU CALLING OUT LIKE RESEARCH ON MICROBIOME AND SO DIFFERENCES IN MICROBIOME COULD BE CONFERRING SENSITIVITY TO PARTICULAR ENVIRONMENTAL FACTORS AND I THINK THIS RESEARCH IS INCREDIBLY NASCENT RESEARCH. CERTAINLY THERE ARE SIGNAL AND YOU DO CALL OUT THE USE OF MODEL SYSTEMS AND I THINK THAT IS PARTICULARLY WHERE SOME OF THE KINDS OF SENSITIVITY VULNERABILITIES MIGHT BE TESTABLE OR AT LEAST BE ABLE TO DEVELOP TESTABLE HYPOTHESES, USING THOSE SYSTEMS. BUT THAT WOULD MAKE BY HAVING IT IN THERE WE WOULD BE MAKING SURE THAT WHEN WE ARE DOING THE POLICY AND THE DEVELOPMENTAL REGULATIONS AND THINGS AND DOING CHEMICAL RISK ASSESSMENTS AND THINGS WE ARE MAKING SURE ASD IS CONSIDERED A VULNERABILITY FACTOR AND WE ARE ABLE TO DO THOSE ANALYSES. SO THIS THEN STILL HAVE ONE FINAL KIND OF OVERARCHING THING WHICH WILL COME UP AGAIN MORE ON THE LIFE STAGE PROBABLY OVER AND OVER BUT IN TERMS OF WHEN COHORT STUDIES ARE BEING DESIGNED TO IMPLEMENT REALLY CALLING OUT THE NEED TO OVERSAMPLE FOR ASD SO WE ARE NOT ASSERTING ONLY DOING -- ONLY CONSIDERING ASD IN SPECIFIC STUDIES, OF THOSE INDIVIDUALS AND POPULATIONS BUT THAT WERE ALWAYS OVERSAMPLING FOR THAT GROUP IN OTHER COHORT STUDIES WHERE WE ARE LOOKING AT ENVIRONMENTAL FACTORS OR OTHER KINDS OF HEALTH RELATED AND -- A LOT OF THE GOVERNMENT LEAD SURVEYS AND LONGITUDINAL COHORT STUDIES. THAT WAS THAT. >> GREAT. THANK YOU, ELAINE. SOMETHING I DIDN'T MENTION ON THE SLIDE IT IS NOT ON THE SLIDE BUT WE DID ADD CO-OCCURRING CONDITIONS INTO THIS AS WELL, THAT WAS NOT IN THE PREVIOUS PLAN IN THIS SECTION BUT WE DID HEAR FROM MEMBERS AND MEMBERS OF THE PUBLIC ABOUT THE IMPORTANCE OF MAYBE THESE FACTORS AND HOW THEY MIGHT INFLUENCE CO-OCCURRING CONDITIONS WITH AUTISM SO THAT HAS BEEN INCORPORATED. . WE DID MENTION SOMETHING ABOUT VULNERABILITY BUT IF YOU HAVE SPECIFIC REFERENCES ELAINE THAT YOU MIGHT WANT TO SEND US WE COULD ELABORATE IT A LITTLE BIT MORE. >> SURE. OPERATOR: GRE >> GREAT. I THOUGHT I SAW MORE HANDS RAIDED BUT I DON'T SEE ANY NOW. -- RAISED BUT DON'T SEE ANY NOW. ANY COMMENTS, SCOTT? >> THANKS, SUSAN. I KNOW THIS IS BEYOND THE NEW ELEMENTS ASPECT BUT AGAIN IT IS A LANGUAGE AGAIN SINCE FOLKS NON-RESEARCHERS SOMETIMES MAY READ THE PLAN, IS THERE ANY WAY TO CONSIDER SOMETHING LIKE GENETIC AND NON-GENETIC OR SOMETHING LIKE THAT? BECAUSE I KNOW AMONG A LOT OF SCIENTISTS ESPECIALLY PHYSICAL SCIENTISTS SOMETIMES MORE SO THAN SOCIAL SCIENTISTS USING THE TERM ENVIRONMENT HAD BEEN PRETTY COMMON FOR MANY, MANY DECADES, WE ARE AWARE OF THAT, THAT THAT IS WHAT THEY USE TO ACCOMPANY GENETIC BUT AMONG THE GENERAL POPULATION AND SOCIETY POLICY MAKERS, SERVICE PROVIDERS, EVEN MAYBE SOME SLEIGHTS OF RESEARCHERS HEARING THE WORD ENVIRONMENT OR READ IT THEY THINK OF MORE OF THE PHYSICAL SPACE AND DON'T REALIZE ENVIRONMENT IS ANYTHING NON-GENETIC BASICALLY, IT COULD BE OTHER THINGS AS FAR AS THE -- THAT RELATE TO HOW HUMAN DEVELOPMENT TAKES PLACE THE PERSON'S GENETICS ITSELF. THAT THAT IS SOMETHING THAT MIGHT BE HELPFUL FOR FOLKS UNDERSTANDING THE CONTEXT OF THAT, THE ENVIRONMENT IS REFERRING TO THE NON-GENETIC ELEMENTS IN TERMS OF WHAT THAT LOOKS LIKE FOR HUMAN DEVELOPMENT LIVED EXPERIENCE UPBRINGING, AS YOU DEVELOP FOR CHILDHOOD AND ADOLESCENTS LIKE INTO ADULT LIF LIFE. JUST THOUGT THAT WOULD BE HELPFUL AS FAR AS LANGUAGE. IF YOU DON'T WANT TO FOR INSTANCE CHANGE IT, AT LEAST SOME CLARITY TO MAKE SURE EXTRA CONTEXT MIGHT BE HELPFUL THERE SO FOLKS HAVE THAT FULL UNDERSTANDING WE ARE NOT JUST TALKING ABOUT JUST A PHYSICAL SPACE, IT IS A LOT BROADER THAN THATHAT AS FAR AS THE NON-GENETC FACTORS THAT SHAPE THE HUMAN DEVELOPMENT WHAT THAT LOOKS LIKE FOR AUTISTIC PEOPLE AND THE CO-OCCURRING CONDITIONS WE MAY EXPERIENCE. THEN I DO LIKE HOW YOU HAVE THE DIVERSE POPULATIONS ELEMENT. THE MORE WE CAN STRETCH THAT THE BETTER. WE HAVE A HISTORY AT TIMES THAT THE STUDIES HAVE NOT OFTEN. THERE IS A LOT OF ISSUES WITH GETTING DIVERSE SAMPLE AND RESEARCH STUDIES, I'M WELL AWARE OF THAT BUT IT IS SOMETHING THAT I THINK WE NEED A MAJOR PRIORITY ON IS THE THAT STUDY SAMPLE SHOULD BE DIVERSE IN TERMS OF BACKGROUND AS FAR AS RACE ETHNICITY GENDER IDENTITY, ET CETERA BUT ALSO AMONG FOLKS IN TERMS OF DIVERSITY, WHAT ASTEISM EXPERIENCE LOOKS LIKE, IN TERMS OF SUPPORT NEEDS AND CO-OCCURRING CONDITIONS AND WHETHER FOLKS HAVE INTELLECTUAL DISABILITY, THERE'S STUDIES THAT TEND TO RULE OUT FOLKS BASED ONCO OCCURRING CONDITIONS SO SOMETIMES STUDIES ARE MISLEADING IN LITERATURE ON PHYSICAL SCIENCE ELEMENTS THAT YOU MAY SEE SOMETHING OUT THERE AND IT MAY BE CONFUSING BECAUSE OF THE FACT PEOPLE DON'T READ SOMETIMES THE FULL TEXT OF THE STUDY TO KNOW LIMITATIONS. AND SHORTCOMINGS IN THAT STUDY AND WHERE IT IS COMING FROM. WE CAN'T REALLY ADDRESS IT IN THE PLAN ALSO IS THAT THIS CHANGES OVER TIME THE THING WITH SCIENCE LIKE WE ARE STILL IN THE I WOULD SAY INFANCY AT TIMES FOR AUTISM RESEARCH IN TERMS OF THE PHYSICAL SCIENCE END IS THAT IT IS SOMETHING THAT IS CHANGING A LOT OVER TIME AS FURTHER RESEARCH INVESTMENT IN THIS SPACE. I HOPE FOLKS CAN BE AWARE OF THAT IN THE GENERAL PUBLIC, I DON'T KNOW THE PLAN IS IN PLACE FOR THAT BUT UNDERSTAND THIS IS IN FLUX AND SOME OF THE ELEMENTS WE HAVE BEEN LEARNING THE 5, 10, 15 YEARS BECAUSE OF THE FACT HOW UNDERSTUDIED AUTISM WAS OVERALL AND WE KNEW ALMOST NOTHING ABOUT SOME OF THE UNDERPINNINGS IN TERMS OF GENETIC AND NON-GENETIC FACTORS, 20, 25 YEARS AGO. THANKS. >> THANK YOU. SO WITH THE WORD ENVIRONMENTAL, IT DOES BRING UP MORE BIOLOGICAL MECHANISM WHICH IS WHAT WE ARE FOCUSING ON IN THIS CHAPTER WE TRIED TO KEEP THE SOCIAL SCIENCE IN CHAPTER 6, WE DON'T WANT TO MISLEAD PEOPLE TO TALK ABOUT SOCIAL FACTORS THAT ALSO CONTRIBUTE TO THE AUTISTIC EXPERIENCE. IN THIS CHAPTER BECAUSE IT STARTED MIXING TOO MANY THINGS TOGETHER AND MIGHT MAKE A SHIFT IN THE COUNTING OF PROJECTS WHEN WE GO BACK TO DO THE PORTFOLIO ANALYSIS. WE WILL TAKE THAT INTO CONSIDERATION MAKING SURE THAT WE COVER SOME OF THE ISSUES YOU MENTIONED IN THE PLAN. >> THANK YOU. MY HUSBAND IS A MAJOR RESEARCHER. HE HAS BEEN INVOLVED IN MANY DIFFERENT TYPES OF THINGS. HE BRINGS UP A QUESTION I PUT IT OUT AS A QUESTION, BECAUSE I DON'T KNOW WHERE THIS IS NECESSARILY GOING WITH THE SECOND POINT HERE. ABOUT HOW WE LOOK AT AUTISM, WILL WE GET TO THE POINT WE HAVE DONE WITH SAY CANCER? I WILL BRING IN TO THAT PERSONAL THING WITH MY BROTHER-IN-LAW WHO HAD A VERY RARE TYPE OF CANCER WHERE THERE WAS ABOUT A 4% SURVIVAL RATE BUT THEY WERE ABLE TO TARGET PARTICULAR THINGS TO HIS BIOLOGY TO WHAT IT WAS THAT WAS IMPACTING HIM AND THEY WERE ABLE TO TREAT THE SUBSET OF CAPITAL C CANCER VERY SUCCESSFULLY. HE IS NOW 18 YEARS OUT. BUT I BRING THAT IN WITH CAN WE OR SHOULD WE LOOK AT HOW WE CAN ENCOURAGE LOOKING AT DIFFERENT SUB SETS BECAUSE IF WE CAN IDENTIFY TYPES OF AUTISM EARLY ON WOULD THERE BE DIFFERENT MODALITIES TO UTILIZE IN HELPING THESE INDIVIDUALS. THIS MAY BE UNDERWAY, I HAVE NOT SEEN THAT, I HAVE NOT DONE THAT RESEARCH BUT I PUT IT OUT AS A QUESTION AT THE SAME TIME AS I WOULD LIKE TO ASK SOMETHING ABOUT THIS BECAUSE WE ARE INVOLVED IN THE GENETICS COMPONENT I IMAGINE PEOPLE HERE ARE AWARE OF WHAT IS HAPPENING WITH THE SPARKS RESEARCH. THE GENETIC COLLECTIONS THEY HAVE BEEN GETTING FROM FAMILIES AND INDIVIDUALS. IS THERE A WAY CAN WE REFERENCE THESE THINGS, IS THERE SOMETHING ARE WE GOING TO DO SOMETHING ASIDE OF WHAT HEAVILY FUNDED LARGE RESEARCH PROJECT THAT IS GOING ON THAT MAY BE ADDRESSING SOME OF THE ISSUISSUES WE LISTED WITH TOPICO TWO POINTS THERE. >> SO IDENTIFYING SUB TYPES, THAT IS PARTIALLY IN QUESTION TWO THERE, IS SOME IN QUESTION 3 AS WELL, NOT LISTED ON THE SLIDE BUT IS TOUCHED UPON BUT WE CAN MAKE SURE THAT THAT IS STILL THERE. WE DID MENTION SPARK IN TERMS OF LARGE STUDIES AND THERE ARE SOME OTHERS THAT WE HAVE MENTIONED AS WELL. ALSO THERE WILL BE OPPORTUNITY TO POTENTIALLY TAKE ADVANTAGE OF OTHER BIG STUDIES THAT ARE NOT AUTISM FOCUSED BUT COULD HAVE AUTISM QUESTION OR COMPONENT SOMEWHERWE WILL CERTAINLY WANT TO REFERENCE THOSE ONGOING PROJECTS AS WELL AS MAKE ROOM FOR ANYTHING NEW TO COME ALONG. >> FOR PURPOSE OF CLARIFICATION. SOME WAY SPARK IS STUDY AND DR. SOMPALLI: WAYS IT IS NOT A STUDY, IT IS A RESOURCE THAT IS BEING CREATED. SO FAMILIES, PERSONS WHO VOLUNTEER TO PARTICIPATE IN SPARK, THAT DON'T HAVE TO BUT ONE WAY THEY CAN PARTICIPATE IS BY PROVIDING A SALIVA SAMPLE WHICH DOES UNDERGO GENETIC SEQUENCING. ANYTHING RELATED TO AUTISM OR INTELLECTUAL DISABILITY THEN THAT IS REPORTED. TO THE PEOPLE WHO SUBMIT SPECIMENS AND ALSO TOLD NOTHING IS FOUND THAT IS NOT TO RELATE TO AUTISM INTELLECTUAL DISABILITY. THAT IS REALLY ALL THAT SPARKED US IN AND OF ITSELF IT IS NOT QUITE A STUDY. OF THAT RESOURCE THE GROUP OF ALL SAMPLES ALL THE SEQUENCING DATA IS MADE AVAILABLE BY APPLICATION TO QUALIFY RESEARCHERS WHO HAVE ETHICS APPROVAL FROM THEIR OWN INSTITUTIONS. OFTEN TIMES IN COMBINATION WITH OTHER SEQUENCING DATA FROM OTHER PROJECTS TO LOOK AT THINGS THAT REQUIRE LARGE NUMBERS OF PARTICIPANTS WHEN LOOKING AT POLYGENIC FACTORS THAT MIGHT BE RELATED TO AUTISM. >> THANKS FOR THAT CLARIFICATION, PAUL. IS THERE ANYTHING AS LONG AS YOU ARE SPEAKING ABOUT THIS CHAPTER THAT YOU THINK WE SHOULD TRY TO EMPHASIZE OR ANYTHING NEW WE WANT TO TAKE INTO ACCOUNT? >> NO OTHER COMMENTS AT THIS POINT. THANK YOU. >> THANK YOU. DINA. >> I TRIED TO SIT AND LISTEN MORE THAN ANYTHING FROM THIS SEGMENT. I DID WANT TO SHARE THAT THIS KIND OF TOPIC HAS COME UP AT THE RQS. WHEN I CAME IN THERE WE HAD A PREVENTION POLICY WHICH RAISED CONCERNS. IT HAS SINCE BEEN EVOLVED TO CAUTIONS AND EFFECTS. -- CAUSE AND EFFECT. IT GETS EASY WHEN YOU ARE LOOKING AT THINGS LIKE TOXICITY IN THE WATER, LEAD POISONING IN PAINT. CLEARLY SOMEONE WITH AUTISM CONDITION THAT EXPERIENCES EXPOSURE TO THOSE ENVIRONMENTAL TOXINS ARE GOING TO EXPERIENCE MUCH MORE COMPLICATED OUTCOME FROM THAT. IN THAT WAY DEFINING ENVIRONMENTAL CAUSES, BECOMES PRETTY SIMPLE. BUT I THINK THAT SOME OF THE GENETIC STUDIES ARE QUITE HAMPERED BECAUSE THE ETHICS AROUND THE PURPOSE AROUND GENETIC STUDIES ISN'T ALWAYS TRANSPARENT. AS A RESULT, MANY INDIVIDUALS DON'T PARTICIPATE IN GENETICS RESEARCH. I THINK BECAUSE THE ETHICS HAVE NOT KEPT UP WITH CAPACITIES OF THE RESEARCH. IN OTHER WORDS, HOW DO WE LOOK AT GENETICS TO AS CERTAIN HARD HARD WIRING OF AUTISTIC INDIVIDUALS FOR ANXIETY. CAN WE REDUCE THEIR ANXIETY? OR ARE WE TRYING TO MAKE THEM INDISTINGUISHABLE FROM THEIR PEERS? THE SIMONS FOUNDATION WHEN THEY RECEIVED THEIR AWARD AT NSAR SAID THEY HOPED TO CURE AUTISM. THAT KIND OF LANGUAGE AND THOSE KINDS OF TRAJECTORIES ARE VERY UNNERVING FOR OUR POPULATION. . I DON'T KNOW WHAT TO DO WITH ALL THAT EXCEPT TO SAY IN TERMS OF GENETIC SUPPORT FROM IACC, IT NEEDS TO FOCUS ON THINGS THAT ARE EMANCIPATORY, THINGS THAT REDUCE STRESS, ANXIETY, DIFFICULTIES WITH COMMUNICATION, INTELLECTUAL DISABILITY THAT IS QUITE SUBSTANTIAL. AND TO BE SURE WE ARE DELINEATING BETWEEN THAT AND TRYING TO ELIMINATE THE CONDITION AS A WHOLE. WE ARE HUMAN BEINGS, WE DO CONTRIBUTE TO SOCIETY, WE DO CONTRIBUTE TO RESEARCH WE WOULD LIKE LIFE TO BE EASIER. I'M NOT SURE ETHICS RESEARCH IS ABLE TO DELINEATE THAT QUITE YET. I WANTED TO VERBALIZE THAT CONCERN, I DON'T KNOW WHAT TO DO WITH IT BUT WANTED TO CONVEY IT. >> THANK YOU FOR SHARING THAT, WE DID TRY TO MAKE A CHANCE TO ADDRESS IT IN THE CHAPTER SO WHEN YOU HAVE A CHANCE TO READ IT LET US KNOW IF THERE'S ANYTHING TO ADD OR ANYTHING THAT STILL DOESN'T MATCH. WE DID TRY TO ADDRESS THAT ISSUE. SOMETHING Y'ALL MIGHT BE INTERESTED IN BEING AWARE OF IS THE NATIONAL HUMAN GENOME RESEARCH INSTITUTE NIH IS SPONSORING A CONFERENCE ON GENETICS AND ABLEISM AS RELATES TO DISABILITY. IN THE FALL. IN IN OCTOBER. WE CAN SHARE MORE INFORMATION ON THAT. IT IS AVAILABLE ON THE WEBSITE, WE HAVE IT ON OUR IACC WEBSITE, IT IS ON THE WEB IN TERMS OF NHGRI'S WEBSITE. WE CAN -- SOMEONE FROM OUR TEAM MIGHT BE ABLE TO PUT THE LINK INTO ZOOM, THE PUBLIC WON'T BE ABLE TO SEE IT BUT IT IS ALREADY ON OUR WEBSITE, IF YOU GOOGLE IT ABLEISM NHGRI CONFERENCE YOU PROBABLY WILL SEE IT IT. SO WE RECOGNIZE THAT AND HOPE YOU MIGHT LEARN SOMETHING FROM THAT CONFERENCE TOO SO THAT WE CAN BE ABLE TO USE FOR THE PLAN. ALICIA, YOU NEXT. >> SORRY, I WAS GOING TO SAY TAKE PAUL FIRST. I MIGHT JUST COPY HIM, BUT I WANT TO JUST IN ADDITION TO WHAT PAUL HAS TO SAY I WANT TO REINFORCE TO THIS GROUP AND TO EVERYBODY THAT THERE IS NOTHING INHERENTLY ABOUT GENETICS RESEARCH THAT PEOPLE -- PEOPLE DO NOT CONDUCT RESEARCH OR STUDY GENETICS OF AUTISM OR ANY CONDITION BECAUSE THEY WANT TO ELIMINATE ANYTHING. PEOPLE STUDY THE GENETICS OF HEIGHT, THEY STUDY THE GENETICS OF EYE COLOR, THIS IS TO HAVE A BETTER UNDERSTANDING. SO IF THEY NEED TO CLARIFY THAT MANY THE STRATEGIC PLAN LET'S CLARIFY THAT. BUT ON THE WHOLE GENETICS RESEARCH IS NOT AIMED AT ELIMINATING ANYTHING. >> THANKS FOR THAT COMMENT ALICIA. I THINK IT HAS BEEN A CHANGE IN DIRECTION BACK MORE THAN A DECADE AGO. PREVENTION WAS ON THE TABLE. IT WAS PARSE OF THE FIRST IACC STRATEGIC PLAN. WE MADE AN EFFORT TO SHIFT SOME OF THAT LANGUAGE AS WE HAVE REFLECTED WHAT IS HAPPENING IN THE COMMITTEE, WHAT'S HAPPENING WITH FUNDERS, ET CETERA, THE FIELD HAS CHANGED IN THAT RESPECT. WE TRY TO REFLECT SOME OF THAT CHANGE IN THE PLAN. WE WILL BE OPEN TO COMMENTS FROM THE COMMITTEE AS YOU HAVE A CHANCE TO REVIEW DRAFTS. PAUL. >> I WILL THANK ALICIA FOR THE COMMENTS YOU DID AND OFFER A SMALL CLARIFICATION. I WAS NOT ABLE TO ATTEND NSAR IN PERSON AND WAS NOT ABLE TO LISTEN IN TO THE SESSION WHERE JIM AND MARILYN SIMONS WERE PRESENTED AN AWARDS. BUT FOR CLARITY, THE AWARD WAS GIVEN PERSONALLY TO JIM AND MARILYN SIMONS. NOT THE FOUNDATION. WE ARE GREATLY ENDENTURED TO THEM FOR HAVING FOUNDED THE FOUNDATION FOR HAVING ENDOWED WITH MONEY TO ALLOW US TO OPERATE. WE LIKE TO THINK THE -- WE SPENT THAT MONEY IN A WAY THAT ADVANCE IT IS WELL BEING WITH AUTISM COMMUNITY. I DON'T KNOW EXACTLY WHAT WORKS JIM USED IN HIS PERSONAL ACCEPTANCE OF THE AWARD BUT IT IS NOT THE MISSION OF THE FOUNDATION OF SAFARI TO CURE AUTISM. THAT IS NOT A WORD WE BELIEVE IN, NOT A WORD WE USE, YOU WON'T FIND IT IN OUR MISSION STATEMENT. THANK YOU. >> APPRECIATE THAT. >> I APPRECIATE THE CLARIFICATION. THANK YOU. >> THANK YOU. SCOTT. DO YOU HAVE A COMMENT? >> THANKS, SUSAN. IT JUST OCCURRED TO ME WITH DISCUSSION AND THE FACT THAT ETHICAL IMPLICATIONS IS ONE OF THE TOPIC AREAS HERE. I WAS WONDERING IF THERE SOMETHING -- COULD BE DISCUSSION OF CONFERENCES OR SYMPOSIA ON ETHICAL LEGAL SOCIETAL ASPECTS, ABOUT A DECADE AGO Y'ALL IN THE U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES TWO DIFFERENT AGENCIES NIH AND ACL FUNDED CONFERENCES IN THIS SPACE ONE WAS RUN BY NIH ITSELF, SUSAN, YOU SPEARHEADED THAT I THINK? AND WHEN WAS -- ONE WAS FUNDED BY ACL, ASAN AND IT RAN A CONFERENCE SYMPOSIA AT SYMPOSIUM AT HARVARD LAW SCHOOL ON ETHICAL LEGAL SOCIETAL IMPLICATIONS OF AUTISM RESEARCH. WE HAVEN'T REALLY HAD MAJOR CONFERENCES IN THAT SPACE SINCE THEN THE LAST DECADE AS MUCH EVEN THOUGH THERE IS A PRESSING NEED MAYBE THAT'S MENTIONED IN DESCRIPTION THAT FITS INTO THE ETHICAL SPACE WITH SCIENCE AND RESEARCH, IS HAVING CONFERENCES OF THAT NATURE AND ALSO HAVING MORE INPUT FROM THE PUBLIC IN TERMS OF DIFFERENT PERSPECTIVES ON AUTISM RESEARCH AND ETHICAL POLICY ELEMENTS, SOCIETAL ASPECTS OF WHAT IT LOOKS LIKE AND HOW IT HAS IMPACT ON FOLKS. I THINK THAT FITS INTO CLARIFYING WHAT WAS DISCUSSED IN TERMS OF ON GENETICS BECAUSE IT IS HELPFUL TO PROVIDE CONTEXT ON HOW COMMITTEE APPROACH IN TERMS OF THE CONTEXT FOR GENETICS ON HERE, YEAH THERE ARE SOME FOLKS THAT WHEN THEY DO SEE GENETICS THEY SEE SOME OF THE HISTORY THERE RELATED TO GENETIC AND GENETIC TESTING AND WHAT IT MEANS AS FAR AS FOR AUTISM. SO THERE IS A LITTLE HISTORY IN TERMS OF SOME CONNOTATION AND THAT CONTEXT WOULD BE HELPFUL LOOKING AT GENETICS PARTIALLY FOR HELPING SUPPORT HOW YOU CAN EMPOWER FOLKS AND HELP ADDRESS THESE MAJOR CHALLENGES AS MENTIONED EARLIER BY OTHER COMMITTEE MEMBERS. WHAT GENETICS FACTORS MAYBE HELPFUL FOR SUPPORTING WHETHER MEDICAL THINGS OR OTHERWISE THAT HELP EMPOWER FOLKS AGAINST DIFFICULTIES AND CHALLENGES AS THEY GO THROUGH LIVED EXPERIENCE AND HUMAN DEVELOPMENT OVER TIME. I THINK SOME OF THE GENERAL POPULATION WITHOUT CONTEXT MAY NOT UNDERSTAND THAT, SOMETIMES THEY MAY HAVE A NARROW VIEW OF GENETICS ESPECIALLY NON-RESEARCHERS THAT MAY NOT UNDERSTAND THE FULL PURPOSE AND FULL SET OF WHAT RESEARCHERS GENETICS DO AND WHY LOOKING AT THESE FACTORS. I THINK LIKE THE RESEARCHERS COULD DO BETTER OF COMMUNICATING THAT SOMETIMES TO THE PUBLIC IN TERMS OF WHAT THEY DO MANY THE CONTEXT HERE AND THAT ADDING MORE CONTEXT BY THE COMMITTEE IS INTEREST ON THESE GENETIC FACTORS ENVIRONMENTAL FACTORS, INTO THE SECTION AS FAR AS TO HELP MAKE IT MORE CONCRETE WOULD BE HELPFUL. >> THANK YOU. WE DID TRY TO DO THAT IN THE SECTION BUT WE WILL CONTINUE TO LOOK AT IT OVER THE NEXT FEW MONTHS AND SEE WHAT ELSE WE MIGHT BE ABLE TO ADD. THANKS FOR MENTIONING THE PREVIOUS CONFERENCES ON ETHICS. THE ONE IACC SPONSORED WAS A WHILE AGO AND SO SOME OF THAT INFORMATION MIGHT BE A LITTLE BIT OUTDATED NOW BECAUSE WE PROBABLY MOVED FURTHER ALONG BUT THIS NHGRI CONFERENCE IS RELEVANT TO WORK WE DO AND WE WILL BE SURE TO HAVE SOME PEOPLE THAT WORK WITH THE IACC ATTEND THAT AND HOPE MAYBE SOME MEMBERS OF THE IACC CAN ATTEND AS WELL. KEEP ME UPDATED IF YOU KNOW OF THINGS HAPPENING OUT IN THE FIELD AND YOU WANT US TO PAY ATTENTION WE CAN LOOK INTO THAT TOO. JOE, DO YOU HAVE SOME COMMENTS? >> THANKS, I WANT TO SEE IF I CAN ADD TO THIS CONVERSATION, MAYBE SPECIFICALLY WHAT SCOTT WAS TALKING ABOUT, WITH REGARDS TO WHY RESEARCH IS HAPPENING IN THE CONTEXT. I SHOULD KNOW THIS, START WITH A QUESTION TO SUSAN. IS THERE A SECTION IN THE STRATEGIC PLAN SPECIFICALLY AROUND THIS QUESTION OF GENETICS AND ENVIRONMENT THAT GOES INTO SOME DETAIL ABOUT HOW WE USE THE TERM AUTISM AND AUTISM SPECTRUM DISORDER IN CERTAIN CONTEXT LIKE IN DSM BUT IN OTHER CONTEXT LIKE WITH (INAUDIBLE) WE DON'T THINK OF IT AS ONE THING. THINK THAT WOULD BE IMPORTANT POINT TO GET ACROSS IN SOME WAY THAT WE MAYBE ADDRESS, I THINK BEING AS RAISING A CONCERN THAT OTHER PEOPLE WILL RAISE AND THERE IS A LOT OF CONFUSION ABOUT COMPLICATED AREA OF GENETICS AND WHAT THE GOALS ARE. I MEAN I DO IN FACT THINK THE GOAL OF GENETICS RESEARCH IN SOME CASES IS TO INTERVENE AN CHANGE COURSE. CERTAINLY RESEARCH IN OUR INSTITUTIONS HEAVILY FOCUSED ON ANGLEMEN SYNDROME AND FINDING A WAY TO REVERSE THE MUTATION. BUT COMPARING IT TO (INAUDIBLE) I THINK WOULD OTHERS MIGHT BE THINKING ABOUT IN TERMS OF AUTISM MORE BROADLY DUE TO COMMON FACTORS, I THINK IS REALLY CONFUSING PEOPLE SO I THINK A LITTLE SET UP AS EXISTS IN MANY TEXT EXPLAINING THAT INTRODUCING WOULD BE REALLY (INAUDIBLE). >> THANK YOU. THAT'S A HELPFUL COMMENT WE CAN THINK ABOUT THAT. I DON'T THINK WE DO HAVE ANYTHING THAT EXPLAINS THAT, WE WOULD NEED THE FIND A WAY TO DO IT IN PLAIN LANGUAGE BUT I THINK THAT IS A GOOD POINT AND WE CAN TRY TO BRING THAT OUT EITHER IN THE SECTION OR MAYBE EVEN EARLIER IN THE PLAN SOMEWHERE IN THE INTRODUCTION. WE DO HAVE A STATEMENT AT THE BEGINNING OF THE PLAN THAT WILL BE ABOUT LANGUAGE, THAT IN SOME CASES WE USE AUTISM, SOMETIMES WE USE AUTISM ON THE SPECTRUM WE USE ASD IN PARTICULAR CONTEXT TALKING ABOUT SPECIFIC DSM DIAGNOSIS. WE SHARE SOME OF THE BACKGROUND OF WHY DIFFERENT TERMS ARE USED AND THEY MIGHT BE USED INTERCHANGEABLY IN THE PLAN. OTHER COMMENTS THAT PEOPLE HAVE? FOR QUESTION 3. IS THERE ANYTHING ELSE FROM EPA OR ANYTHING FROM NIEHS THAT YOU WOULD LIKE TO SAY ABOUT QUESTION 3? I KNOW YOU MAY NOT HAVE HAD TIME TO GO OVER THIS IN DETAIL BUT ANYTHING THAT YOU WOULD LIKE US TO MAKE SURE WE MENTION IN THIS CHAPTER AS I KNOW YOU ARE EXPERTS IN THIS AREA TOO. SO NOT HEARING ANYTHING. T SO THEN WE ARE -- SOUNDS LIKE WE ARE FINISH WITH THE DISCUSSION OF QUESTION 3. I HAVE SCHEDULED A 15 MINUTE BREAK NOW BUT WE JUST TOOK A BREAK, WOULD YOU RAISE YOUR HAND IF YOU WANT US TO TAKE A BREAK RIGHT NOW? AND IF I DON'T SEE RAISED HANDS MAYBE JUST GO ON TO QUESTION 4 AND MAYBE GET DONE EARLIER THAN SCHEDULED? ANYONE FOR A BREAK AT THE MOMENT? NOT SEEING ANY HANDS SO SOUNDS LIKE PEOPLE ARE COMFORTABLE WITH GOING ON TO QUESTION FOUR. .. .I WILL MOVE US INTO THAT. THIS IS ON INTERVENTIONS. THE SHORTENED NEW TEXT IS WHICH INTERVENTIONS WILL IMPROVE QUALITY OF LIFE? THE SUB TOPICS INCLUDED WITHIN QUESTION 4 ARE MEDICAL PHARMACOLOGICAL INTERVENTIONS, BEHAVIORAL AND DEVELOPMENTAL INTERVENTIONS COMPLIMENTARY AND ALTERNATIVE APPROACH, TECHNOLOGY BASED INTERVENTION AND COMMUNICATION INTERVENTIONS INCLUDING AAC. INTERVENTIONS FOR CO-OCCURRING CONDITIONS. OUTCOME MEASURES AND BIOMARKERS RESEARCH AND POLICY ISSUES INCLUDING INCLUSION IN RESEARCH DISPARITIES AND ACCESS TO INTERVENTIONS AND THE NEEDS OF HIGH SUPPORT NEEDS AND INTERVENTIONS IN THE WORK FORCE INTERVENTION WORK SPACE. THOSE ARE GENERAL CATEGORIES BUT SAME DISCUSSION QUESTIONS, DO YOU HAVE ANY IMPORTANT TOPICS THAT YOU WOULD LIKE TO SEE HIGHLIGHTED IN THIS SECTION OF THE STRATEGIC PLAN AND HAVE THERE BEEN ANY RECENT SIGNIFICANT CHANGES THAT MIGHT SHIFT THE FOCUS IN THIS STRATEGIC PLAN, THINGS THAT MIGHT NEED TO BE TAKEN INTO CONSIDERATION BY FUNDERS AND RESEARCHERS AND PEOPLE THAT ARE MANAGING SERVICE PROGRAMS OR WRITING POLICY IN THE AREA OF INTERVENTIONS? JENNIFER. >> I DON'T HAVE ANY QUESTIONS ON THE TOPICS, I HAD MORE OF A REACTION TO THE TITLE FOR THIS CHAPTER. WHICH REFERENCE QUALITY OF LIFE. I REACTED TO IT BECAUSE OF THE WAY I HEARD THAT I GUESS IS BASICALLY PEOPLE WITH AUTISM HAVE A LOWER QUALITY OF LIFE. AND THAT SOMEHOW SUGGESTED THAT'S THEIR FAULT WHICH IS REALLY NOT TRUE, IT IS MORE THAT SOCIETY HASN'T FULLY INCLUDED PEOPLE WITH AUTISM TO ADEQUATELY SUPPORT THEM LIVING WELL IN THE COMMUNITY. SO JUST WONDERING IF THERE COULD BE OPPORTUNITY TO REFRAME QUESTION 4 SO THAT IT IS NOT PUTTING THE BURDEN ON AUTISTIC PEOPLE BUT MORE TALKING ABOUT WHAT INTERVENTIONS ARE NEEDED TO SUPPORT QUALITY COMMUNITY LIVING, THERE'S SOMETHING TO THAT EFFECT. I DON'T KNOW IF I HAVE THE WORDS TO SUGGEST BUT IT IS IMPORTANT TO RETHINK THAT ONE. >> HOW ABOUT WHICH INTERVENTIONS ARE NEEDED TO BEST SUPPORT AUTISTIC PEOPLE OR SOMETHING ALONG THOSE LINES. IS THAT BETTER? >> WE HAVE TO PLAY WITH IT A LITTLE BIT BUT YEAH, JUST SOMETHING THAT CAN BETTER REFLECT. >> IF YOU THINK OF SOMETHING EMAIL SUGGESTIONS DEFINITELY OPEN TO TO CHANGING THAT TO BE A BETTER FIT. DINA. >> MAYBE SOMETHING THAT FOCUSES ON THE SYSTEMS ITSELF P. WHICH SYSTEMIC INTERVENTIONS CAN MAXIMIZE QUALITY OF LIFE OR SOMETHING WITH THE WORDS SYSTEMS OR SYSTEMIC IN IT MIGHT BE HELPFUL. BACK TO PRIOR SLIDE? >> THE CHAPTER COVERS MORE THAN SYSTEMIC INTERVENTIONS INCLUDES DRUG INTERVENTION AS AND BEHAVIORAL INTERVENTIONS SO IT DOES HAVE SYSTEMIC INTERVENTION BUT UMBRELLA FOR LOTS OF THINGS. >> UNDER RESEARCH AND POLICY ISSUES, ONE CLINICAL LENG WE HAVEN'T BEEN TALKING ABOUT MUCH IS REALITY THAT MANY INDIVIDUALS WHO SUBJECTIVELY WOULD BE PERCEIVED HAVING LOW SUPPORT NEEDS, THEY ACTUALLY HAVE INCREDIBLE DAILY LIVING CHALLENGES. UNFORTUNATELY OUR POLICIES ARE DRIVEN BY IQ, BY SUBJECTIVE OBSERVATION OF A PERSON IN A SITUATION, RATHER THAN TAKING INTO CONSIDERATION THEIR REPORTING SIGNIFICANT IMPAIRMENTS RELATED TO THINGS AS BASIC AS FOOD SECURITY AND HOUSING AND THE FACT THAT THEY ARE UNSUPPORTED AUTISM NEEDS LEAD INTO CO-OCCURRING CONDITIONS LIKE DEPRESSION ANXIETY SUICIDAL IDEATION. WHEN WE LOOK AT THE PIE CLEARLY PEOPLE WITH HIGH SUPPORT NEEDS NEED MORE INTERVENTIONS MORE FREQUENTLY HIGHER INTENSITY BUT QUITE OFTEN THAT RESULTS IN US FAILING TO ACKNOWLEDGE IF YOU HAVE AN AUTISM DIAGNOSIS IS FEW AS FIVE THE TEN HOURS A WEEK COULD BE LIFE ALTERING. SO THAT IT SHOULD BE BASED ON NEED AND NOT BASED ON THESE RANDOM TESTING FORMULAS I GUESS IS WHAT I'M TRYING TO SAY. >> THANK YOU. THAT IS HELPFUL. IN TERMS OF HIGH SUPPORT NEEDS, THAT WAS MEANT TO BE PRETTY INCLUSIVE NOT JUST IT COULD INCLUDE CO-OCCURRING CONDITIONS AND OTHER THINGS. BUT WANTED TO MENTION THAT AS THE PUBLIC HAS MENTIONED THE IMPORTANCE OF BEING INCLUSIVE ACROSS THE ENTIRE SPECTRUM AND THAT INCLUDES ALL THE DIFFERENT CO-OCCURRING CONDITIONS TOO THAT CAN MAKE FOR CHALLENGES FOR INDIVIDUALS ON THE SPECTRUM, WE APPRECIATE THAT. >> I WANT TO BE CLEAR, DELINEATING THE DIFFERENCE IN A KEOGH OCCURRING CONDITION VERSUS UNMET SUPPORT NEEDS. WHAT WE ARE MISSING IS PEOPLE WHO HAVE FINISHED ACADEMICS WITH INTENSIVE SUPPORTS, PEOPLE WHO HAVE PART TIME EMPLOYMENT, MAY STILL BE HAVING UNMET SUPPORT NEEDS THAT PREVENT THEM FROM MOVING PERHAPS FULL TIME OR NOT PROVIDED ADEQUATE INTERVENTIONS AND SUPPORT TO JUST BE HELPING IN A PART TIME STATUS. SO I -- YEAH THERE IS A CATEGORY FOR CO-OCCURRING CONDITIONS BUT SO OFTEN THOSE CONDITIONS ARE DIRECT RELATIONSHIP TO UNMET SUPPORT NEEDS. RELATED TO THE AUTISM ITSELF. >> YES. THAT IS AN IMPORTANT POINT WE DID TRY TO BRING THAT INTO QUESTION 6 WHERE WE TALK ABOUT HOUSING EMPLOYMENT AND WE MENTION FOOD SECURITY AND THINGS LIKE THAT. SO WE DIDN'T USE THE TERMINOLOGY UP MET SUPPORT NEEDS BUT THAT IS A GOOD WAY TO DESCRIBE THAT AND YOU CAN CERTAINLY BRING THAT OUT HERE. IN THAT CHAPTER. HERE WE HAD A TITLER GROUP, A LARGE GROUP OF DIFFERENT INTERVENTIONS. GOOD POINT. WE APPRECIATE THAT. SCOTT. >> THANKS, SUSAN. I WANT TO SAY I CONCUR ON THE NEED FOR PUTTING IN THAT UNMET SUPPORT NEEDS, I THINK IS REALLY HELPFUL EVEN IF JUST A SMALL REFERENCE HERE VERSUS THE OTHER CHAPTER. I THINK THAT THERE IS -- THAT IS -- ALSO FITS INTO THE ISSUE WE HAVE NOW OF FOLKS MAKING JUDGMENTS BASED ON DSM DIAGNOSIS AND WHAT LEVEL SUPPORT WAS INDICATED BY THE CLINICIAN, WHETHER L 1, 2, 3 AND FOLKS ARE MAKING JUDGMENTS RATHER THAN LOOKING AT THINGS BASED ON ACTUAL NEED OF THE PERSON. I KNOW MANY AUTISTIC FOLKS ADOLESCENTS AND ADULTS THAT'S HAPPENED TO THEM FREQUENTLY. I MYSELF TO BE HONEST I HAVE MANY UNMET SUPPORT NEEDS BUT FOLKS MAKE JUDGMENTS BECAUSE THEY SEE ME SOMETIMES AT THESE IACC MEETINGS OR OTHER WEBINARS AND SEE ME SPEAK AND HEAR MY JOB TITLE. THEY MAKE GENERALIZATIONS ABOUT MY LIVED EXPERIENCE, THEY HAVE NEVER SEEN ME ON A DAILY LIFE BASIS. THAT IS TRUE FOR A LOT OF OTHER AUTISTIC PEOPLE IN ADULT LIFE AND I WOULD EXTEND THAT TO ADOLESCENT AND CHILDHOOD TOO WHO HAVE FREQUENTLY UNMET SUPPORT NEEDS AND AS WAS MENTIONED SOMETIMES JUST A FEW OR SEVERAL HOURS A WEEK COULD MAKE THE DIFFERENCE BETWEEN ENHANCING SOMEONE'S QUALITY OF LIFE AND HAVING JUST BETTER HEALTH AN WELLNESS, IT IS NOT ALWAYS A PERSON NEEDS 40, 50 HOURS EXTRA SERVICES BUT THEY MAY NEED A LITTLE EXTRA SUPPORT AND SERVICES AND OUR SYSTEMS ARE NOT WELL GOOD OR JUST NOT WELL SET UP TO SUPPORT FOLKS IN THAT CUSTOMIZE NATURE THAT WHERE MAYBE A FEW HOURS OF SUPPORT. I WOULD ALSO SAY DO YOU HAVE THE SPACE SUSAN TO CONSIDER MOVING LIKE -- MOVING AROUND THE ORDER WHERE THESE APPEAR IN THE CHAPTER IN TERMS OF WHICH SUBSECTIONS COME NEXT? IF ER UNABLE TO DO THAT I WOULD MOVE TECHNOLOGY BASED INTERVENTIONS AND COMMUNICATION INTERVENTIONS AND IACC TO BE EARLIER MAYBE FIRST BECAUSE IT IS SO UNDERFOCUS SUCH A MAJOR PRIORITY AMONG AUTISTIC PEOPLE IN TERMS OF COMMUNICATION NEEDS AND SUPPORTS VERSUS THE OTHER FACETS MEDICAL AND PHARMACOLOGICAL HAVE BEEN A MAJOR FOCUS STRATEGIC PLAN FOR A LONG TIME, FOLKS ARE AWARE OF THAT. BUT I THINK IT WOULD HELP TO ADD TECHNOLOGY AND COMMUNICATION SUPPORTS AND IACC SUPPORT FOR FOLKS TREMENDOUSLY IMPORTANT TO HAVE THAT PERHAPS AS I SAY THE FIRST SUBSECTION IN Q4 TO APPEAR BEFORE THESE OTHER AREAS, THAT WOULD HELP HIGHLIGHT PRIORITY THAT MAJOR UNMET NEEDS THERE FOR SUPPORTS AND SERVICES FOR FOLKS TO HELP ENHANCE QUALITY OF LIFE. I DO ALSO CONCUR WITH -- MAYBE SOMETHING WRAPPED AROUND ENHANCED QUALITY OF LIFE OR ENHANCED HEALTH AND WELLNESS AND QUALITY OF LIFE OR HEALTH AND WELLNESS OR SOMETHING LIKE THAT, BECAUSE THAT IS WHAT THESE ARE ALL AIMED AT DOING IS EMPOWERING FOLKS TO HAVE A BETTER HEALTH AND WELLNESS, BETTER QUALITY OF LIFE IN LINE WITH PRIORITIES UNDER THE CARES ACT IN TERMS OF THAT, THE REASON YOU ARE HAVING THESE INTERVENTIONS OR THE REASON FOR SUPPORTS AND SERVICES IS TO BOOST FOLKS UP. TO ADDRESS CHALLENGES FOR THE SAKE OF EMPOWERMENT PERSPECTIVE. IT IS HELPFUL TO HAVE THAT CONTEXT IN HERE. >> THANK YOU. CERTAINLY WE CAN LOOK INTO THE ORDER I SEE THAT YETTA ALSO MENTIONED SHE LIKED THE IDEA OF SEEING TECHNOLOGY AND COMMUNICATION MAYBE IN A DIFFERENT ORDER. WE WILL SEE HOW THE FLOW GOES WITH THE CHAPTER BUT WE DID WANT TO MAKE A BIGGER EMPHASIS ON TECHNOLOGY BASED INTERVENTION AND COMMUNICATION BASED INTERVENTIONS MADE IN THE PAST SO THAT'S BEEN AN EFFORT AND WE WILL TAKE ANOTHER LOOK AT THAT. ALICIA. >> I JUST DON'T WANT -- I KNOW DINA DIDN'T SEE IT THIS WAY, I DON'T WANT US TO LOSE SIGHT OF THE ISSUES AROUND CO-OCCURRING CONDITIONS WHILE THEY WILL NOT PART OF THE AUTISM PER SE, WE DON'T KNOW IF THEY ARE OR NOT BUT THINGS LIKE SEIZURES AND GASTRO INTESTINAL PROBLEMS, AND OTHER MEDICAL AND OTHER CO-MORBID DIS AND CO-OCCURRING CONDITIONS ARE NOT PART OF THE FOUR AUTISM SYMPTOMS AND CAN OCCUR ANYONE HOWEVER THEY ARE GREATLY MISUNDERSTOOD IN E DEVELOPMENTAL DISORDERS. WE DON'T HAVE THE RIGHT TOOLS TO STUDY THEM. THE PROCEDURES USED TO ASSESS THEM ARE WHOLLY INAPPROPRIATE FOR THIS COMMUNITY. SO I KNOW SHE DIDN'T END IT THIS WAY BUT MAKE SURE WE ALSO HIGHLIGHT THE CO-OCCURRING CONDITIONS. >> 100% AGREE WITH YOU ALICIA. I WAS THINKING AROUND MENTAL HEALTH, THANKS FOR CLARIFYING THAT. AGREE. >> IACC HAS BEEN VERY FOCUSED ON ADDRESSING CO-OCCURRING CONDITIONS BECAUSE IT IS SOMETHING THAT AUTISTIC INDIVIDUALS AND FAMILIES TALK ABOUT ALL THE TIME HAVING IMPACT ON BEING ABLE TO LIVE HEALTHY AND WELL SO MAKE SURE WE ADDRESS THAT IN A GREATER WAY. JENNIFER. >> SO I THINK ONE OF MY COMMENTS IS SUPPORTING THE ADDRESSING UNMET NEEDS AND SUPPORTS BECAUSE WHEN I THINK OF INTERVENTION AND LOOK AT THIS LIST, SOME MISSING RELATING TO UNMET NEEDS SO INTERVENTIONS THAT OCCUR RELATED TO HOUSING THAT IMPROVE FOR WHAT WE ARE CALLING QUALITY OF LIFE OR EMPLOYMENT INTERVENTIONS THAT SUPPORT GETTING EMPLOYMENT OR STAYING EMPLOYED. GENERAL HOME COMMUNITY BASE SERVICES THAT COULD BE VIEWED INTERVENTIONS AND THAT MEETING THESE SHIPPING UNMET NEEDS BUT OFTENTIMES UNMET NEEDS. HOW WE FACTOR INTO THE QUESTION AS RELATES TO INTERVENTIONS. ANOTHER THING IN THIS LIST, IT MAY FOLLOW DEVELOPMENTAL INTERVENTIONS BUT ALSO INTERVENTIONS I THINK ABOUT WHAT IS HAPPENING IN SCHOOLS AND DIFFERENT INTERVENTIONS THAT HAPPEN IN SCHOOLS, THAT MAYBE UNDER DEVELOPMENTAL BUT I WANT THE MAKE SURE WE GET EDUCATIONAL INTERVENTIONS IN THERE TOO. WITH MEDICAL DOES THAT IN THE PHARMACOLOGICAL DOES THAT IS IT PHYSICAL AND MENTAL HEALTH OR DO WE NEED TO CALL OUT MENTAL HEALTH THAT IS DIFFERENT FROM BEHAVIORAL INTERVENTION BECAUSE BEHAVIOR IS HOW SOMEONE IS BEHAVING DOESN'T NECESSARILY INDICATE THAT SOMEBODY HAS A MENTAL HEALTH DISABILITY. IT MAY BE BEHAVIOR AS A RESULT OF HOW THEY COMMUNICATE. SO I WANTED TO MAKE SURE WE ARE INCORPORATING MENTAL HEALTH IN THIS QUESTION AND INTERVENTIONS RELATESSED TO MENTAL HEALTH. >> MENTAL HEALTH IS IN THE CHAPTER AS WELL AS EDUCATIONAL INTERVENTIONS WHICH IN THE SLIDE FOR BREVITY GOT INCLUDED UNDER DEVELOPMENTAL. WE WILL MAKE SURE THAT THOSE ARE THERE I KNOW THEY ARE THERE BUT WE WILL MAKE SURE IT IS CLEAR. BECAUSE THOSE ARE IMPORTANT AREAS IN MENTAL HEALTH CERTAINLY SOMETHING WE HAVE BEEN HEARING ABOUT FROM THE PREVIOUS IACC AND THIS IACC AND WE WANT TO MAKE SURE THAT IS ADDRESSED. THANK YOU FOR THOSE COMMENTS. JAYLEN. >> THANK YOU, THERE'S SO MANY WONDERFUL COMMENTS TODAY. SO MANY BRIGHT PEOPLE HERE. IT IS VERY REASSURING TO HEAR THIS MANY WONDERFUL VOICES IN GIVING INSIGHTS. I WONDER TOO ABOUT SOME OF THE THINGS WITH INTERVENTIONS THAT SOMETIMES WE DON'T INCLUDE. I WONDER ABOUT THE FAMILIES, IF YOU HAVE MENTIONED THIS EARLIER I HAD TO STEP AWAY FOR A MOMENT, I HAD A SITUATION HERE. BUT FAMILIES, IF SOMEONE IS NOT LIVING IN A HEALTHY SITUATION WITH PARENTS THAT CAN COPE, KNOW HOW TO COPE, WHAT YOU ARE DOING AND INTERVENTIONS THAT CAN HELP SIBLINGS BECAUSE IF THERE IS TENSION BETWEEN SIBLINGS, EVEN IN THE MOST I DON'T KNOW IF THERE IS A TYPICAL FAMILY OUT OF COUNTRY THOUGH. EVERYBODY HAS A DYNAMIC. SOMETIMES I THINK THAT DYNAMIC CAN BE EXACERBATED AND BE MUCH MORE DRAMATIC VERY MUCH TO THE POINT OF TRAUMA. IF WE CAN LOOK AT INTERVENTIONS FOR FAMILIES OR HOW WE CAN MAKE THOSE THINGS AVAILABLE, THAT MAY COME INTO TRAINING MORE PROFESSIONALS THAT COULD COME IN AND HELP FAMILIES LEARN HOW THEY CAN COPE AND HOW EVERYONE CAN BE PART OF A FAMILY AND HAVE SUCCESS IN THEIR OWN WAY AND IN SO DOING HELPING THE AUTISTIC INDIVIDUAL HAVE A BETTER ENVIRONMENT AS WELL, AS WELL AS HAVING OTHER CITIZENS HAVE GREATER SUPPORTS IN THEIR WELL BEING. >> THANK YOU, JAYLEN. WE HAVE CAREGIVER SUPPORTS IN QUESTION FIVE. WE HAVE A SECTION THAT WILL ADDRESS ALL THOSE, IT DOES INCLUDE SIBLINGS SPECIFICALLY NAMED SIBLINGS AS PART OF THAT, DEFINITELY WANT TO TAKE THAT INTO ACCOUNT BECAUSE THERE ARE A LOT OF WAYS THAT WE CAN HELP THE FAMILY SYSTEM TO BEST SUPPORT SOMEONE ON THE SPECTRUM. NEXT WE WILL GO TO STEVEN. >> HI, THERE, THIS IS A COMMENT FROM SCOTT ROBERTSON. HE SAYS ALSO THE UNMET NEEDS DISCUSSION FITS INTO RELATED AREA. T NAMELY THAT IT IS THE EFFORT TO CLASSIFY PEOPLE WITH DISABILITIES AS A MEDICALLY UNDERSERVED POPULATION GROUP LIKE OTHER PEOPLE WITH OTHER DISABILITIES, OTHER ARE CERTAINLY MEDICALLY UNDERSERVED AUTISTIC CHILDREN ADOLESCENTS AND ADULTS FACE MAJOR BARRIERS TO ACCESSING HEALTHCARE IN HUMAN SERVICES AND SUPPORTS TO HELP FOSTER HEALTH AND WELLNESS. THIS IS PARTIALLY COVERED IN QUESTION 6 I THINK. >> THANK YOU FOR THAT COMMENT, SCOTT. AND WE DID MAKE AN EFFORT TO TALK ABOUT THAT ISSUE OF THE PEOPLE ON THE AUTISM SPECTRUM BEING PART OF THE DISPARITY POPULATION IN THEMSELVES. AND THAT IS IN THIS NEW SECTION THAT WILL BE TALKING ABOUT TOMORROW THAT IS ON EQUITY AND DISPARITIES. BUT WE KNOW THE NATIONAL COUNCIL ON DISABILITY FOR EXAMPLE IN THEIR HEALTH EQUITY FRAMEWORK TALKED ABOUT PEOPLE WITH DISABILITIES AS BEING CAMPAIGNING TO HAVE THAT CREATED AS AN OFFICIAL HEALTH DISPARITY POPULATION SO AUTISM WOULD FIT WITHIN THAT AND WE WANTED TO MAKE SURE THAT THAT IS MENTIONED IN THE STRATEGIC PLAN. HIGHLIGHT IT ALONG WITH SOME OF THE OTHER DISPARITY AND EQUITY ISSUES THAT WE ARE LOOKING AT. THANK YOU FOR SHARING THAT. DIANA GARCIA. >> HI, GOOD AFTERNOON. I WANTED TO MAKE A COMMENT AROUND INTERVENTIONS IN THE CLASSROOM AND FAMILY MEDIATED INTERVENTIONS. I WOULD LIKE TO SEE EMPHASIS ON THE PIECE AROUND CULTURALLY LINGUISTICALLY APPROPRIATE INTERVENTIONS. IN THOSE TWO SECTIONS IN PARTICULAR, THERE IS NO MENTION OF LINGUISTICALLY APPROPRIATE INTERVENTIONS. FACTORING IN CULTURE OF THE FAMILY. THANK YOU FOR THAT COMMENT. YOU CAN LOOK INTO THAT. THAT IS SOMETHING THAT IS WE WANT TO WEAVE IN THROUGHOUT VEG PLAN, SO IT DOES BELONG IN HERE, IF IT IS NOT THERE WE CAN PUT IT IN OR EMPHASIZE IT MORE IF IT IS ALREADY MENTIONED BUT MAYBE NOT HIGHLIGHTED. SO STEVEN, DO YOU HAVE ANOTHER COMMENT? >> NOT AT THIS TIME. >> SORRY, THOUGHT YOU HAD A HAND RAISED. ANY OTHER QUESTIONS OR COMMENTS ON THIS SECTION? ANYONE OUT THERE THAT IS WORKING ON INTERVENTIONS OR MANAGES A PORTFOLIO OF EFFORTS IN THE AREA OF INTERVENTIONS THAT YOU WANT TO GIVE MORE COMMENTS TO MAKE ON THIS? >> SUSAN, NICOLE. I DON'T HAVE ANYTHING TO ADD AGAIN, THIS WELL COVERS THE TYPES OF PROJECTS THAT ARE FUNDED IN OUR PORTFOLIO. >> THANK YOU. >> JENNIFER JOHNSON, ANOTHER POTENTIAL INTERVENTION WONDERING IF LISTED IN THIS SECTION. AS PEER TO PEER INTERVENTIONS, PEER TO SPEAR SUPPORT IS INTERVENTION AND RESEARCH BEING DONE ON THAT. >> I THINK IT IS THERE. IT IS -- I THINK IT IS IN THERE SOMEPLACE SO WE WILL MAKE SURE THAT THAT IS MENTIONED. THAT IS ANOTHER IMPORTANT CAT GORE. ADDITIONAL COMMENTS? >> SUSAN, DO WE HAVE ANYTHING IN REGARD TO NAVIGATING INSURANCE MEDICARE OR MEDICAID? Z A FAMILY INTERVENTION TOOL? >> KIND OF GOES WITH SYSTEMS NAVIGATION. >> IN CHAPTER 5 WE TRIED TO INCLUDE SYSTEMS NAVIGATION BUT ACTUALLY IF YOU HAVE ANY -- I KNOW THAT YOU HAVE PROBABLY WAY TOO MANY REFERENCES BUT IF YOU HAVE ANY KEY REFERENCES YOU MIGHT WANT TO SHARE ON THAT WITH US THAT WOULD HELP US BECAUSE THAT SOMETHING THAT WOULD BE NEW IN THE PLAN THIS TIME. SO THAT WOULD BE HELPFUL IF IF YOU HAVE ANYTHING ON SYSTEMS NAVIGATION THAT YOU COULD -- >> HAPPY TO GET THOSE OUT TO YOU. >> THANKS, GREAT. WE CAN MAKE SURE THAT WE HAVE -- TRY TO WRITE AN ADEQUATE SECTION ON THAT. ALICE, DO YOU HAVE A COMMENT? ? >> I'M NOT SURE IF THIS GOES IN THIS SECTION BUT I WONDER ABOUT WHERE WE HAVE EVIDENCE BASE FOR INTERVENTIONS ACROSS ALL THESE DOMAINS JUST RESEARCH ON SPEEDING UP DISSEMINATION SO BECAUSE I DO FEEL LIKE THERE ARE A LOT OF EVIDENCE BASED INTERVENTIONS THAT ARE JUST IGNORED IN A LOT OF COMMUNITIES AND THAT ALSO RELATES TO HEALTH DISPARITIES. I WONDER IF DISSEMINATION GIVEN THE INTEREST IN THIS AREA NOW MIGHT NOT BE WORTH MENTIONING HERE. >> I THINK WE CAN FIT THAT IN WITH RESEARCH AND POLICY ISSUES ARE THERE GREAT EXAMPLES THAT YOU HAVE OF DISSEMINATION STRATEGIES OR EFFORTS THAT ARE OUT THERE THAT ARE HELPING PEOPLE? >> I CAN GET BACK TO YOU. >> THINK ABOUT IT AND LET US KNOW IF YOU HAVE ANY EXAMPLES BUT WE CAN FIT THAT INTO THE RESEARCH AND POLICY SECTION. >> THANK YOU. OTHER COMMENTS? SCOTT? >> SUSAN, I WANT TO MENTION RELATED TO WHAT WAS SHARED ABOUT PEER SUPPORTS IS I DON'T KNOW WHETHER YOU ARE AWARE MAYBE YOU CAN GO INTO THE PLAN PEER SUPPORTS AS ONE EXAMPLE OUT THERE, IS PHILADELPHIA HAS A PEER SPECIALIST PROGRAM THEY SUPPORT EDUCATION AND TRAINING OPPORTUNITIES FOR AUTISTIC ADULTS TO SERVE AS PEER SPECIALISTS FOR FELLOW AUTISTIC PEOPLE FOR NAVIGATING SYSTEMS SERVICES, EDUCATION, WORKPLACE, THEY HAVE BEEN TRYING TO TAKE IT STATEWIDE, TO SUPPORT AUTISTIC ADOLESCENTS AND ADULTS SO WHEN I LOOK IT UP THE PERSONS THEY SUPPORT THROUGH THE PROGRAM MUST BE 14 YEARS OLD, AND QUALIFY FOR CBH SWITCHES THERE INSURANCE PROVIDER SLASH MEDICAID AND HAVE AUTISM DIAGNOSIS IN PHILADELPHIA. THAT IS AN EXAMPLE OF HAVING PEER SUPPORTS THAT COULD BE HELPFUL FOR THE SYSTEMS NAVIGATION CONNECTING TO SUPPORTS AND SERVICES, AGAIN TO WORK SCHOOL, ET CETERA. JUST LIKE COMMUNITY BASED PARTICIPATORY RESEARCH GOOD EXAMPLE TO FOLLOW YOU ARE SUPPORTING EDUCATION AND TRAINING OF AUTISTIC PEOPLE TO SUPPORT FELLOW AUTISTIC PEOPLE AND MAYBE SOME CASES TO SUPPORT BROADER FAMILIES TOO BUT HAVE -- I THIS I THAT IS THE ONLY EXAMPLE I THINK UNLESS ANYONE NOSE OF OTHERS IN THE UNITED STATES WHERE FOLKS ARE TRAINING AUTISTIC ADULTS AND REALIZING WE CAN PLAY A VALUABLE ROLE IN SUPPORTING FELLOW AUTISTIC PEOPLE INCLUDING ADOLESCENTS AND ADULTS INCLUDING WHEN FOLKS ARE JUST RECENTLY AFTER DIAGNOSIS AND FOR GENERAL SUPPORT AND SERVICES TO -- WE HAD MORE ADVANCEMENT IN THAT PEER SUPPORT SPECIALIST AREA IN MENTAL HEALTH SPACE, SO ANOTHER IF YOU WANT TO KNOW BROADER LITERATURE ON THAT, THAT IS WHERE WHEN WE CREATED THAT COMMUNITY PEER OFFICE AN PEER SPECIALIST IN PHILADELPHIA TO SUPPORT FELLOW AUTISTIC PEOPLE, THEY BASE IT OFF OF HOW THAT IS HAPPENING FOR MANY DECADES IN THE MENTAL HEALTH COMMUNITY ACROSS THE UNITED STATES TO HELP EDUCATE AND TRAIN SUPPORT SKILL DEVELOPMENT FOR FOLKS WITH MENTAL HEALTH CONDITIONS TO HELP EMPOWER FELLOW FOLKS WITH MENTAL HEALTH CONDITIONS TO SUPPORT HEALTH AND WELLNESS AND QUALITY OF LIFE AND HELP SUPPORTS AND SERVICES. >> IF YOU HAVE A WEBSITE IF YOU CAN PUT MITT THE CHAT OR EMAIL IT TO ME FOR THE TEAM. IF YOU HAVE REFERENCES FOR ANYTHING ELSE JUST SEND THEM OUR WAY AND WE WILL MAKE SURE THE TEAM HAS THOSE. >> I WILL PUT IN THE CHAT FOR Y'ALL. OTHER COMMENTS? >> THIS IS NICOLE, THIS SOMETHING I WAS THINKING ABOUT BASED ON WHAT WE HAVE BEEN SEEING THE PAST COUPLE OF YEARS, I DON'T KNOW IF THEY FIT IN HERE, TELEMEDICINE, UTILIZING THAT FOR INTERVENTION, DO WE DESCRIBE THAT DURING THIS CHAPTER? I CAN'T RECALL. >> IT IS IN THE PLAN, I DON'T REMEMBER IF IT IS IN THIS CHAPTER OR NOT, IT PROBABLY IS AND PROBABLY IS IN MORE THAN ONE PLACE. THAT IS A REALLY IMPORTANT POINT BECAUSE ESPECIALLY DURING COVID WE STARTED ACCUMULATING SOME EVIDENCE ABOUT THE EFFECTIVENESS OF REMOTELY DELIVERING INTERVENTIONS. SO THAT WOULD BE WORTHWHILE TO MENTION ESPECIALLY IF THERE HAVE BEEN STUDIES THAT SUGGESTED THAT THIS IS VALID WAY TO DELIVERNA COULD EXPAND CAPACITY TO DELIVER TO MORE PEOPLE AND MORE PLACES. I SEE COUPLE OF REFERENCE, SCOTT, THANK YOU. IVA NOVA. >> THIS IS IVA NOVA. JUST SPEAKING OF THE -- TRYING TO MAKE SURE LIKE THE COVID POLICIES ARE NOT HARMING AUTISTICS OR CAUSING MORE TRAUMA, ESPECIALLY AUTISTIC THAT I HIGH SUPPORT NEEDS AN CAN'T TELL YOU THEY DECEM DISTRESSED Y HAVING ROUTINES GONE OR PUT THROUGH SENSORY ISSUES. SO THAT REQUIRE COMMENTS ABOUT COVID, REGULATIONS AROUND THAT IS NOT UNDUE HARM. THANK YOU. >> THANK YOU. SO WE HAVE SOME INFORMATION ABOUT THAT IN A SPECIAL SECTION ON COVID. I DON'T KNOW IF -- I KNOW WE HAD SOMETHING ABOUT FOR EXAMPLE DIFFICULTY FOR SOME PEOPLE WEARING MASKS AND SOME THINGS LIKE THAT BUT WE CAN TAKE NOTE OF THAT FOR THE COVID SECTION AND WHETHER HE TALK MORE ABOUT THAT TOMORROW. >> THANK YOU. OF COURSE. OTHER COMMENTS? LAUREN. >> AGREE WITH A COMMENT ON TELEHEALTH GOING THE TO RAISE THAT AS WELL IN THE NEXT CHAPTER AND THINK ABOUT ACCESS TO BOTH INTERVENTIONS AND SERVICES AND SUPPORTS THROUGH TELEHEALTH AND OTHER VIRTUAL MECHANISMS AS WE THINK ABOUT IMPROVING ACCESS TO CARE. >> THANK YOU. IF ANY OF YOU ARE AWARE OF NEW PAPERS THAT HAVE COME OUT THAT SUPPORT TELEHEALTH APPROACH ESPECIALLY THAT HAVE BEEN DEVELOPED DURING THE COVID PANDEMIC, PLEASE SEND THEM OUR WAY AND WE HAVE USE THOSE AS REFERENCES. THAT SHIFTED THE PAST FEW YEARS. WE COULD TALK ABOUT A LITTLE MORE IN THIS PLAN. ANYBODY ELSE? ALICE. >> I HAVE A QUICK THING I WONDER IF WE SHOULD ALSO MAKE SURE TELEHEALTH GETS MENTIONED FOR DIAGNOSIS OR EVEN SCREENING AND DIAGNOSIS BECAUSE I FELT LIKE THERE'S A NUMBER OF PAPERS TALKING ABOUT REMOTE DIE DIAGNOSIS BEING SUCCESSFUL. >> IF YOU HAVE ANY ON HAND IF YOU CAN SEND THOSE TO US TOO THAT WOULD BE GREAT. I THINK THAT WOULD BE IMPORTANT. I KNOW I RECENTLY SAW ONE, I THINK THAT WOULD BE GOOD TO BRING THAT UP. THAT IS ANOTHER THEME OF INCLUDING MORE PEOPLE IN PROVIDING ACCESS AND ALSO HOPEFULLY ADDRESSING SOME OF THE DISPARITIES P. ADDITIONAL COMMENTS? SOUNDS LIKE MAYBE WE HAVE MADE THE COMMENTS WE WANT TO TODAY. Y'ALL HAVE BEEN EXTREMELY EFFICIENT AND JUST DONE A GREAT JOB BRINGING UP REALLY IMPORTANT POINTS AND TOPICS AND THINGS WE WANT TO MAKE SURE THAT WE BRING UP IN THE PLAN. DINA. >> DID I HEAR YOU CORRECTLY, ARE WE GOING TO ADDRESS DISPARITIES TOMORROW? >> YES. >> OKAY. I HAVE A COMMENT ABOUT DISPARITIES BUT I WILL WAIT UNTIL TOMORROW. THANK YOU. >> UNLESS DIRECTLY ON INTERVENTIONS, WE HAVE A SECTION THAT IS ON THAT. SO WE CAN TALK ABOUT THAT TOMORROW. YES Y'ALL HAVE BEEN VERY EFFICIENT SO WE ARE FINISHED EARLY FOR TODAY. YOU HAVE DONE A GREAT JOB SHARING THOUGHTS AND IDEAS AND I HOPE EVERYONE FEELS LIKE THEY HAD AN OPPORTUNITY TO COMMENT IF YOU WANTED TO COMMENT AND TOMORROW WE WILL DO THE SAME THING, WE HAVE A FEW MORE TOPICS BUT IF WE ARE EFFICIENTLY SHOULD HAVE PLENTY OF TIME TO TALK ABOUT EACH OF THOSE TOPICS. THIS IS REALLY HELPFUL INPUT FOR OUR TEAM IN TERMS OF GETTING REVISIONS MADE TO THESE DOCUMENTS. UNLESS THERE ARE ANY ADDITIONAL QUESTIONS ARE THERE ANY OTHER QUESTIONS ABOUT TODAY AND WHAT WE HAVE DISCUSSED OR WHAT IS HAPPENING TOMORROW? TOMORROW WE WILL BE GOING THROUGH QUESTIONS 5, 6, 7 AND THE 9 SECTIONS ON COVID DISPARITIES SEX AND GENDER. I WILL MAKE A MENTION OF SOME OTHER PIECES THAT WILL BE IN THE SURVEY SO THAT -- SO WE HAVE A FEW MORE PIECES TOMORROW. I THINK WE WILL STILL BE ABLE TO FIT WELL WITHIN OUR TIME. SCOTT. >> THANKS, SUSAN. QUICK QUESTION. IF WE ALSO THINK OF ANY OTHER RESOURCE OR OTHER THINGS YOU CAN SITE OFFHAND CAN WE JUST EMAIL THAT TO YOU? >> YES YOU CAN. IF YOU ARE ABLE TO EMAIL THEM TO ME AND/OR C C THE IACC TEAM THAT WOULD BE GREAT TO MAKE SURE -- I CAN FORWARD THINGS BUT JUST TO MAKE SURE NOTHING IS MISSED, IT HELPS TO COPY THEM AS WELL. >> SO I MET YOU AS BEING THE BROADER YOU. >> OR YOU CAN EMAIL IACC TEAM AND COPY ME. THAT WILL MAKE SURE THAT IT GETS TO OUR TEAM BECAUSE NOW WE -- AFTER THIS MEETING ENDS TOMORROW WE WILL HAVE SOME TIME TO CONTINUE MAKING REVISIONS BASED ON WHAT WE HAVE HEARD. >> GREAT. THERE MAYBE A FEW OTHER -- I KNOW IF A COUPLE OTHER CASES ALSO WITH EXECUTIVE FUNCTION AND SENSORY MOTOR I HAVE REFERENCES TO COUPLE OF KEY REVIEW PAPERS THAT HAVE COME OUT THAT WOULD BE HELPFUL IN SLIDING FOR THE REFERENCES SEC OF THOSE AREAS. >> THANK YOU. I APPRECIATE THAT EVERYONE IS ALSO SENSITIVE TO THE FACT THAT WE ARE TRYING TO BEND THESE TOPICS AND IT IS NEVER PERFECT AND THERE'S CROSS OVER BETWEEN THE TOPICS BUT AS MUCH AS POSSIBLE WE ARE TRYING TO PUT THEM IN CATEGORIES BECAUSE LUMPED TOGETHER IS TOO CONFUSING TO READ SO TRY TO MAKE DISTINCTIONS BETWEEN THE GROUPS BUT RECOGNIZE IN REAL LIFE THESE THINGS OVERLAP WITH EACH OTHER. SO WE WILL DO OUR BEST TO MAKE EVERYTHING CLEAR AND WE REALLY THANK YOU TODAY FOR ALL OF YOUR WORK ON THIS. WE LOOK FORWARD TO SEEING YOU TOMORROW SO WE WILL START AT ONE O'CLOCK. AND WITH THAT I THINK THAT WE CAN END THE MEETING FOR TODAY. THANK YOU, EVERYONE FOR JOINING US AND WE LOOK FORWARD TO SEEING YOU TOMORROW. BYE-BYE. >> THANK YOU, SUSAN AND YOUR COLLEAGUES FOR SPEARHEADING THIS WORK GROUP MEETING FOR US TO HAVE THIS ACTIVE DISCUSSION. IT WAS VERY PRODUCTIVE IN TERMS OF THE IDEAS AND THOUGHTS THAT WERE SHARED TO HELP ENHANCE THE NARRATIVE ACROSS AREAS OF THE STRATEGIC PLAN AND WHAT WE WILL BE DISCUSSING FOR THE OTHER THREE QUESTIONS TOMORROW. THANK YOU VERY MUCH. >> EXCELLENT. WE APPRECIATE YOUR COMMENTS. EVERYONE'S CONTRIBUTIONS TO THE DISCUSSION TODAY. >> THANK YOU. >> THANK YOU. >> BYE-BYE.