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.
>> BYE-BYE.