WELCOME TO THIS MEETING OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE.
I'M JOSHUA GORDON, DIRECTOR OF
THE NATIONAL INSTITUTE OF MENTAL
HEALTH AT THE NATIONAL
INSTITUTES OF HEALTH AND THE
CHAIR OF THE INTERAGENCY AUTISM
COORDINATING COMMITTEE.
I'M JOINED BY DR. SUSAN DANIELS,
THE DIRECTOR OF THE OFFICE OF
AUTISM RESEARCH COORDINATION AT
NIMH, AND THE EXECUTIVE
SECRETARY OF THE IACC AS WELL AS
THE ACTING NATIONAL AUTISM
COORDINATOR.
I'M REALLY PLEASED WE CAN GET
TOGETHER TODAY ON THIS VIDEOCAST
FOR THE PUBLIC, AND I'M VERY
MUCH LOOKING FORWARD TO THE
EXCITING DAY THAT WE HAVE FOR US
TODAY.
I WANT TO TAKE A MOMENT TO
ACKNOWLEDGE SOME IMPORTANT
UPDATES ABOUT SEVERAL OF OUR
COMMITTEE MEMBERS.
FIRST, I'D LIKE TO WELCOME
DR. LEAH LOZIER, I'M NOT SURE
WHICH WAY IT'S SUPPOSED TO BE
PRONOUNCED, YOU'LL LET US KNOW,
FROM THE U.S. DEPARTMENT OF
HOUSING AND URBAN DEVELOPMENT.
DR. LOZIER IS A SOCIAL SCIENTIST
AT HUD.
DR. LOZIER, MAYBE YOU'D LIKE TO
INTRODUCE YOURSELF?
>>THANK YOU, AND GOOD MORNING.
CAN EVERYBODY HEAR ME OKAY?
>>WE CAN HEAR YOU JUST FINE.
>>GREAT.
THANKS.
SO AS DR. GORDON SAID, MY NAME
IS LEAH LOZIER.
I'M A SOCIAL SCIENCE ANALYST
WITH THE DEPARTMENT OF HOUSING
AND URBAN DEVELOPMENT, OR HUD.
I JOINED HUD IN 2014 AS A
PRESIDENTIAL MANAGEMENT FELLOW
UNDER THE OBAMA ADMINISTRATION,
WHEN THERE WAS A PUSH TO TRY TO
BRING FOLKS WITH STEM DEGREES
INTO THE FEDERAL GOVERNMENT.
I HAVE BEEN IN THE POLICY
DEVELOPMENT AND RESEARCH OFFICE
THE ENTIRE TIME, MOSTLY IN THE
PROGRAM EVALUATION DIVISION,
WHERE I HAVE HELPED DESIGN AND
MANAGE THE DEPARTMENT'S LARGE
RESEARCH STUDIES.
IN THAT CAPACITY, I REALLY
WORKED AT THE INTERSECTION OF
HOUSING AND HEALTH.
DURING MY TIME THERE, HUD'S
INTEREST IN HEALTH AND USING
HOUSING AS A PLATFORM FOR HEALTH
AND IMPROVING THE QUALITY OF
PEOPLE'S LIVES HAS ONLY GROWN,
AND THAT'S WHERE I'VE DONE MOST
OF MY WORK, ESPECIALLY AT THE
INTERSECTION OF HEALTH AND
HOUSING AND THINKING ABOUT HOW
TO SUPPORT OLDER ADULTS TO AGE
IN THEIR COMMUNITIES.
BUT I HAVE WORKED ACROSS A
VARIETY OF PROJECTS, INCLUDING
MOST RECENTLY ON A DEMONSTRATION
TO HELP FAMILIES WITH CHILDREN
ACCESS HIGHER OPPORTUNITY AREAS.
I HAVE A BACHELOR OF
SCIENCE DEGREE IN PSYCHOLOGY
FROM VIRGINIA TECH, AND I EARNED
MY PH.D. IN NEUROSCIENCE FROM
GEORGETOWN UNIVERSITY.
IN THAT CAPACITY, BOTH AS A
RESEARCH ASSISTANT AND LATER AS
A PH.D. CANDIDATE, I WORKED ON A
VARIETY OF COGNITIVE
NEUROSCIENCE RESEARCH STUDIES
INCLUDING SOME STUDIES WITH
CHILDREN WITH AUTISM.
SO I'M REALLY EXCITED AND
HUMBLED TO BE JOINING COMMITTEE
AND THINKING ABOUT MY PREVIOUS
RESEARCH EXPERIENCE AND LOOKING
AT IT THROUGH A NEW LENS AS PART
OF HUD.
SO THANK YOU VERY MUCH.
>>WELL, THANK YOU, DR. LOZIER,
AND OF COURSE WE KNOW HOW
IMPORTANT HOUSING IS FOR MEMBERS
IN THE AUTISM COMMUNITY,
ESPECIALLY AS THEY REACH
ADULTHOOD.
AND SO WE APPRECIATE HUD'S
CONTINUED PARTICIPATION AND I
WANT TO THANK DR. TERESA SOUZA,
THE PREVIOUS IACC MEMBER FOR HER
PAST SERVICE TO THE COMMITTEE.
WE ALSO WANT TO ANNOUNCE SOME
MEMBERS WHO HAVE CHANGED
POSITIONS SINCE OUR LAST
MEETING.
DR. SUSAN RIVERA IS NOW
PROFESSOR OF PSYCHOLOGY AND THE
DEAN OF THE COLLEGE OF
BEHAVIORAL AND SOCIAL SCIENCES
AT THE UNIVERSITY OF MARYLAND.
CONGRATULATIONS, DR. RIVERA.
AND DR. JENNY MAI PHAN IS NOW A
POSTDOCTORAL FELLOW IN THE
CENTER FOR AUTISM SPECTRUM
DISORDERS AT CHILDREN'S NATIONAL
HOSPITAL RIGHT HERE IN
WASHINGTON, D.C.
CONGRATULATIONS TO YOU AND
ACTUALLY TO BOTH OF YOU ON YOUR
NEW POSITIONS.
IF ANY MEMBERS OF THE COMMITTEE
HAVE SIMILAR ANNOUNCEMENTS YOU'D
LIKE TO SHARE AT FUTURE IACC
MEETINGS, PLEASE DO ALERT SUSAN.
SO I WOULD LIKE TO START OFF THE
MEETING WITH A SUMMARY OF WHAT
WE'RE GOING TO BE DOING TODAY.
WE'RE LOOKING FORWARD TO A
VARIETY OF PRESENTATIONS, SOME
ON SERVICES AND SOME ON THE
LATEST SCIENCE.
WE'RE GOING TO START THE MORNING
WITH A RECOGNITION OF NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH FROM THE DEPARTMENT OF
LABOR.
AND A PRESENTATION ON
EMPLOYMENT-FOCUSED AUTISM
RESEARCH.
WE'LL ALSO CONTINUE WORKING ON
ONE OF OUR KEY ASSIGNMENTS, THE
IACC STRATEGIC PLAN.
I WANT TO THANK ALL OF YOU FOR
YOUR WORK OVER THE SUMMER AND
FOR COMING TO THE MEETING THAT
WE HELD IN JULY TO DO SOME
FOCUSED WORK ON THE PLAN.
AND THERE ARE SOME PUBLIC
COMMENTS ABOUT THAT WORK AS
WELL, SO WE'LL HAVE AN
OPPORTUNITY TO DISCUSS THE PLAN
DURING OUR WORK SESSION AS WELL
AS DURING THE PUBLIC COMMENTS.
THIS AFTERNOON WE'LL ALSO BE
HEARING OTHER PUBLIC COMMENTS
AND HEARING PRESENTATIONS ABOUT
AUTISM IN OLDER ADULTS,
INCLUDING THE VICE VOIC VOICES F
SCIENTISTS AND INDIVIDUALS WITH
LIVED EXPERIENCE.
I'LL TURN IT OVER NOW TO SUSAN
FOR OPENING REMARKS AND FOR
APPROVAL OF THE MINUTES FROM OUR
LAST MEETING, WHICH TOOK PLACE
IN APRIL.
SUSAN?
>>THANK YOU, DR. GORDON.
I ALSO WANT TO WELCOME EVERYONE
TO THIS MEETING TODAY, AND WE
HAVE SOME EXCITING PRESENTATIONS
ON THE AGENDA AND ARE PLEASED TO
RECOGNIZE NATIONAL DISABILITY
EMPLOYMENT AWARENESS MONTH HERE
AT THIS MEETING.
AND LOOKING FORWARD TO THE
PRESENTATIONS RELATED TO THAT.
I ALSO WANT TO THANK EVERYONE
WHO PARTICIPATED IN THE JULY
WORKING GROUP MEETING FOR THE
STRATEGIC PLAN.
IT WAS A VERY PRODUCTIVE MEETING
AND I REALLY APPRECIATE
EVERYONE'S ENGAGEMENT AND SOME
OF THE FOLLOW-UP THAT YOU DID
AFTERWARD, AND WE'LL BE TALKING
ABOUT THAT IN OUR COMMITTEE
BUSINESS TODAY.
WE WILL BE TALKING ABOUT THE
STRATEGIC PLAN LATER.
SO IF YOU WERE UNABLE TO ATTEND
OR WOULD LIKE MORE INFORMATION
ABOUT THAT MEETING, YOU CAN GO
TO OUR WEBSITE AND THERE'S SOME
INFORMATION THERE IN THE VIDEOS
OF COURSE POSTED FOR ANYONE
WHO'S LISTENING.
ALSO WELCOME TO ALL OF OUR
LISTENING AUDIENCE TODAY.
SO JUST A COUPLE OF HOUSEKEEPING
REMINDERS.
PLEASE KEEP YOUR MICROPHONES OFF
UNLESS YOU'RE SPEAKING, AND WE
ASK THAT YOU KEEP YOUR CAMERAS
OFF DURING THE PRESENTATIONS AND
BREAKS.
AND OF COURSE IF YOU ARE
SPEAKING, YOU'RE WELCOME TO TURN
YOUR CAMERA ON AND IF ANYONE IS
FEELING ZOOM FATIGUE OR STRESS
ABOUT BEING ON CAMERA, YOU DON'T
NEED TO BE ON CAMERA, YOU CAN
LEAVE YOUR CAMERA OFF IF YOU
NEED TO.
AND IF YOU ARE A COMMITTEE
MEMBER OR FEDERAL ALTERNATE WHO
WOULD LIKE TO CONTRIBUTE A
COMMENT IN WRITING DURING A
DISCUSSION VERSUS SPEAKING
ORALLY AND PUTTING UP YOUR HAND,
PLEASE RAISE YOUR HAND, AND YOU
CAN -- WELL, YOU CAN RAISE YOUR
HAND AND WE CAN CALL ON YOU, OR
YOU CAN SEND YOUR COMMENT TO
SEND COMMENTS HERE, WHICH IS --
INSOME, YOUIN ZOOM YOU WILL SEEN
LISTED.
THAT IS A STAFF MEMBER FROM OUR
TEAM, STEVEN ISAACSON WHO WILL
SEE ANY OF THE CHATS YOU SEND
THROUGH TO HIM AND HE WILL BE
ABLE TO READ THEM OUT IF YOU
PREFER THAT METHOD OF
COMMUNICATION DURING THE
DISCUSSION.
AND STEVEN SEND COMMENTS HERE
CAN HELP WITH ANY TECHNICAL
ISSUES AND PASS THAT ON TO THE
REST OF THE TEAM THAT CAN HELP
YOU IF YOU'RE HAVING ANY
PROBLEMS.
I'D LIKE THE TEAM ALSO TO KNOW
RIGHT NOW THERE ARE SOME PEOPLE
THAT WERE HAVING TROUBLE WITH
THE ZOOM LINK, SO PLEASE BE
AWARE OF ANY KIND OF MESSAGES
COMING IN FROM PEOPLE THAT NEED
HELP WITH ZOOM.
SO UNLESS THERE ARE ANY
QUESTIONS ABOUT THAT, I WILL
PROCEED WITH THE APPROVAL OF THE
MINUTES FROM THE APRIL 2022
MEETING, AND THE DRAFT MINUTES
ARE POSTED ON OUR WEBSITE, AND
YOU HAVE A LITTLE BIT OF A
CHANCE TO LOOK AT THEM.
I WANTED TO KNOW IF THERE ARE
ANY COMMENTS, IS THERE ANY
DISCUSSION ABOUT THE MINUTES
THAT WE POSTED?
AND WE HAVEN'T HEARD ANYTHING IN
WRITING IN TERMS OF THE MINUTES.
BUT IF THERE ISN'T ANY
DISCUSSION OF THE MINUTE, CAN I
GET A MOTION ON THE FLOOR TO
ACCEPT THE MINUTES?
>>I MOVE TO ACCEPT THE MINUTES.
>>THANK YOU.
A SECOND?
>>THIS IS YETTA MYRICK.
I'LL SECOND.
>>THANK YOU.
ALL IN FAVOR OF THIS, PLEASE
RAISE YOUR HAND IN THE ZOOM
FEATURE SO OUR TEAM CAN SEE.
OKAY, THANK YOU.
YOU CAN PUT YOUR HANDS DOWN.
STWIS THERE ANYONE OPPOSED?
JALYNN, I THINK YOU HAD YOUR
HAND STILL UP.
IS THERE ANYONE OPPOSED TO
ACCEPTING THESE MINUTES AS THEY
WERE PREPARED?
AND ALISON, ARE YOU OPPOSED OR
FOR THE MINUTES?
OKAY.
I DON'T SEE ANYBODY OPPOSED.
IS THERE ANYONE THAT JUST WANTS
TO ABSTAIN?
SO I BELIEVE THEN UNANIMOUSLY,
WE'RE ACCEPTING THE MINUTES.
IT LOOKS LIKE THE MAJORITY OF
THE COMMITTEE IS IN FAVOR OF
THEM.
SO THANK YOU VERY MUCH.
WE ACCEPT THE MINUTES AND WE
WILL POST THE FINAL VERSION
AFTER THIS MEETING, BUT THE
DRAFT WHICH IS BASICALLY THE
SAME AS THE FINAL VERSION IS
ALREADY POSTED FOR ANYONE WHO
WANTS TO REVIEW WHAT HAPPENED AT
THE LAST MEETING.
THANK YOU SO MUCH, AND I'M
TURNING IT BACK OVER TO JOSH.
>>WELL, THANK YOU, SUSAN, AND
THANKS TO THE COMMITTEE FOR
ACCOMPLISHING THAT ONE LITTLE
PIECE OF BUSINESS WE HAD TO DO
BEFORE WE GET INTO SOME OF THE
MORE ENTERTAINING AND
INFORMATIVE PART OF OUR DAY.
TO START, I'M REALLY PLEASED TO
WELCOME MS. ANUPA GEEVARGHESE,
THE CHIEF OF STAFF FOR THE
OFFICE OF DISABILITY EMPLOYMENT
POLICY AT THE U.S. DEPARTMENT OF
LABOR.
MS. GEEVARGHESE WILL BE SHARING
A FEW WORDS WITH US IN
RECOGNITION OF NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH.
YOU'RE MUTED STILL.
THERE YOU GO.
>>THANK YOU.
DR. GORDON, DR. DANIELS AND
MEMBERS OF THE INTERAGENCY
AUTISM COORDINATING COMMITTEE,
FOR INVITING ME TO SPEAK TODAY.
GOOD MORNING.
MY NAME IS ANUPA GEEVARGHESE,
AND I AM THE COME CHIEF OF STAFH
THE OFFICE OF DISABILITY
EMPLOYMENT POLICY.
I AM THRILLED TO BE HERE ON
BEHALF OF ASSISTANT SECRETARY
FOR LABOR DISABILITY EMPLOYMENT
POLICY TARYN WILLIAMS, AND TO
SPEAK WITH ALL OF YOU ABOUT
NATIONAL DISABILITY EMPLOYMENT
AWARENESS MONTH.
THE OFFICE OF DISABILITY
EMPLOYMENT POLICY, OR ODEP IS
THE ONLY FEDERAL REGULATORY
AGENCY THAT COORDINATES WITH
EMPLOYERS AT ALL LEVELS OF
GOVERNMENT TO INCREASE WORKPLACE
SUCCESS FOR PEOPLE WITH
DISABILITIES.
OUR GOALS AT ODEP ARE TO IMPROVE
ACCESS AND OPPORTUNITY AND
ADVANCE WORKFORCE INCLUSION FOR
DIVERSE PEOPLE WITH
DISABILITIES.
THROUGH POLICY CHANGE, OUTREACH
AND TECHNICAL ASSISTANCE.
WE DO THIS BY PARTNERING WITH A
WIDE RANGE OF STAKEHOLDERS,
INCLUDING THE IACC.
IT IS MY GREAT PLEASURE TO SPEAK
ABOUT NATIONAL DISABILITY
EMPLOYMENT AWARENESS MONTH, AND
HOW WE COMMEMORATE ENDING THE
VIRTUAL AND IN-PERSON EVENTS
THROUGHOUT THE MONTH OF OCTOBER.
WE HAVE ACTIVELY CELEBRATED THE
INCLUSION OF PEOPLE WITH
DISABILITIES IN THE WORKFORCE IN
OCTOBER SINCE CONGRESS
RECOGNIZED THE FIRST WEEK OF
OCTOBER AS NATIONAL EMPLOY THE
PHYSICALLY HANDICAPPED WEEK IN
1945.
THIS CELEBRATION EXPANDED TO
PROMOTE THE EMPLOYMENT OF ALL
PEOPLE IN 1962, AND IN 1988, IT
TRANSFORMED INTO THE MONTH-LONG
CELEBRATION WE ARE FAMILIAR WITH
TODAY.
THIS YEAR'S ENDING THEME, WHICH
IS BEHIND ME, IS DISABILITY PART
OF THE EQUITY EQUATION, AND IT
FITS PERFECTLY WITH THE IACC'S
EMPHASIS ON SUPPORTING
DIVERSITY, EQUITY, INCLUSION,
AND ACCESSIBILITY, O OR DEIA IN
IMPROVING QUALITY OF LIFE.
THIS HAS DEMONSTRATED COMMIT
TOMENT INCREASING ACCESSIBILITY
FOR DIVERSE JOB SEEKERS AND
WORKERS.
WHEN PRESIDENT BIDEN ISSUED HIS
EXECUTIVE ORDER ON DIVERSITY,
EQUITY, INCLUSION AND
ACCESSIBILITY IN THE FEDERAL
WORKFORCE, IT WAS THE FIRST TIME
DISABILITY WAS INCLUDED IN OUR
BROADER DEIA EFFORT FOR THE
FEDERAL WORKFORCE.
WE HAVE ALSO, AT THE DEPARTMENT
OF LABOR, PRY PRIORITIZED OUR
COMMITMENT TO DEIA THROUGH OUR
GOOD JOBS INITIATIVE, AND OUR
PROJECTS AT ODEP SUCH AS THE
PARTNERSHIP ON INCLUSIVE
APPRENTICESHIP, OR PIA.
SUPPORTING NEURODIVERSITY AT
WORK IS CRUCIAL TO OUR GOAL TO
PROMOTE SOLUTIONS FOR THE EQUITY
EQUATION AND ENSURE DIVERSE
PEOPLE WITH DISABILITIES CAN
FULLY ACCESS GAINFUL EMPLOYMENT
OPPORTUNITIES AND CAREER
PATHWAYS.
EARLIER THIS MONTH, ODEP HOSTED
AN ENDING EMPLOYER CHAT ON
WORKPLACE MENTAL HEALTH AND
WELL-BEING, WHICH FEATURED
REMARKS BY MARTY WALSH, THOUGHT
LEADERS FROM INDUSTRY, ADVOCACY
AND LABOR MOVEMENTS, AND
ASSISTANT SECRETARY TARYN
WILLIAMS.
WE RECOGNIZE THAT PEOPLE WHO ARE
NEURODIVERGENT, INCLUDING YOUTH
AND ADULTS ON THE AUTISM
SPECTRUM, CAN FACE MAJOR
BARRIERS TO ATTAIN AND MAINTAIN
JOBS THAT FIT THEIR INTERESTS,
STRENGTHS, SKILLS, AND TALENTS.
MANY AUTISTIC PEOPLE REMAIN
UNEMPLOYED OR UNDEREMPLOYED, AND
LACK ACCESS TO THE NEEDED
SUPPORT SYSTEMS TO HELP ENSURE
WORKPLACE SUCCESS.
THAT'S WHY RECENTLY, ODEP'S
EMPLOYER ASSISTANCE AND RESOURCE
NETWORK ON DISABILITY INCLUSION,
OR EARN, OUR TECHNICAL
ASSISTANCE CENTER FOR EMPLOYERS,
LAUNCHED IT'S REDESIGNED GUIDE
TO NEURODIVERSITY IN THE
WORKPLACE.
THIS TOOLKIT INCLUDES
INFORMATION ABOUT ORGANIZATIONAL
AND EMPLOYEE BENEFITS FOR
NEURODIVERSITY AT WORK, AND
APPROACHES AND PRACTICES FOR
MANAGEMENT, PEER TRAINING AND
MENTORING.
IT ALSO SPOTLIGHTS HIRING AND
RECRUITMENT PROGRAMS FOR
NEURODIVERSITY AT WORK IN THE
FEDERAL GOVERNMENT, AND ACROSS
THE INDUSTRY.
NADALSO FEATURING INFORMATION AD
RESOURCES ON HOW TO SUPPORT
WORKERS WITH DISABILITIES,
INCLUDING PEOPLE WHO ARE
NEURODIVERGENT.
SPECIALISTS ARE AVAILABLE TO
PROVIDE FREE, CONFIDENTIAL AND
EXPERT GUIDANCE.
AS WELL, JAN HAS A FANTASTIC A
TO Z GUIDE ON ACCOMMODATIONS FOR
PEOPLE WITH DISABILITIES.
THIS MORNING, WE'RE EXCITED TO
SHARE THAT YOU'LL BE HEARING A
PRESENTATION BY MATHEMATICA
ABOUT ITS AUTISM-FOCUSED WORK
INCLUDING AN ODEP SUPPORTED
PROJECT FOR EMPLOYMENT RESOURCES
FOR THOSE ON THE AUTISM
SPECTRUM.
WE'RE THRILLED BY THE WORK OF
THE PROJECT TEAM ABOUT HOW TO
IMPROVE ACCESS TO JOB
OPPORTUNITIES AND CAREERS FOR
DIVERSE YOUTH AND YOUNG ADULTS
ON THE AUTISM SPECTRUM.
ASSISTANT SECRETARY WILLIAMS AND
I ENCOURAGE ALL OF YOU TO HELP
US PUT THE A FOR ACCESSIBILITY
INTO DEIA, AND HELP MAKE
DISABILITY A KEY COMPONENT OF
THE EQUITY EQUATION BY HOSTING
NDEAM EVENTS DURING THE
REMAINDER OF OCTOBER AND OF
COURSE CELEBRATING THROUGHOUT
THE YEAR.
WE CANNOT HAVE FULL INCLUSION IN
THE WORKPLACE UNLESS WE HAVE
ACCESSIBILITY.
THAT'S WHY WE MUST HIGHLIGHT THE
NEED FOR WORKERS WITH
DISABILITIES TO ACCESS INCLUSIVE
WORKPLACES AND RECEIVE WORKPLACE
ACCOMMODATIONS THAT WE KNOW CAN
HELP DRIVE JOB SUCCESS.
PLEASE MAKE SURE TO VISIT OUR
ODEP WEBPAGE FOR ENDING TO
DOWNLOAD THE ENDING POSERS IN
ENGLISH AND SPANISH, WATCH A
SHORT BUT FABULOUS VIDEO ON
NDEAM AND FIND OTHER NDEAM
RESOURCES, SUCH AS A SOCIAL
MEDIA -- THANK YOU FOR ALL THE
WORK YOU DO FOR SUPPORTING FULL
AND INCLUSIVE ACCESS TO
EMPLOYMENT OPPORTUNITIES FOR
YOUTH AND ADULTS WITH
DISABILITIES, INCLUDING AUTISTIC
PEOPLE, AND HAPPY NDEAM.
THANK YOU.
>>THANK YOU VERY MUCH FOR
JOINING US TODAY, AND FOR THAT
MESSAGE.
WE'RE GOING TO BUILD ON THAT
MESSAGE NOW.
IT'S REALLY MY PLEASURE TO
INTRODUCE THE NEXT SET OF
PRESENTATIONS WHICH IS GOING TO
FOCUS ON AUTISM-RO-RELATED RESEH
AT MATHEMATICA, A COMPANY THAT
DOES -- THAT PROVIDES SOFTWARE
FOR MATHEMATICAL SOLUTIONS FOR A
RANGE OF PROBLEMS.
OUR FIRST SPEAKER TO INTRODUCE
THE PRESENTATION WILL BE SCOTT
ROBERTSON.
DR. SCOTT ROBERTSON.
A SENIOR POLICY ADVISOR IN THE
OFFICE OF DISABILITY EMPLOYMENT
POLICY AT THE DEPARTMENT OF
LABOR, AND HE IS AN ALTERNATE
MEMBER OF THE IACC AND ALSO AN
YOAUTISTIC SELF-ADVOCATE.
DR. ROBERTSON WILL BE PROVIDING
THE INTRODUCTION.
THE PRESENTATION FROM OUR GUEST
SPEAKERS FROM MATHEMATICA,
DR. ANKITA PATNAIK, AND PAUL
SHATTUCK, WHO MANY MAY HAVE
KNOWN FR, NOW A SENIOR FELLOW AT
MATHEMATICA.
WELCOME TO YOU ALL.
DR. ROBERTSON, PLEASE, GET US
STARTED.
>>GREAT.
THANK YOU, DR. GORDON, FOR THAT
GREAT INTRO, AND I WILL JUST
BRIEFLY BE SHARING A LITTLE BIT
MORE ABOUT THE BACKGROUNDS OF
OUR PRESENTERS AND WHY THE
OFFICE OF DISABILITY EMPLOYMENT
POLICY, ODEP, WHILE WE WERE
MAKING A -- HAVE BEEN MAKING A
MAJOR INVESTMENT IN THAT PROJECT
ON RESEARCH SUPPORT SERVICES FOR
EMPLOYMENT OF YOUNG ADULTS ON
THE AUTISM SPECTRUM, AND FOR
THOSE WHO DO NOT KNOW ME, I AM A
WHITE AUTISTIC MAN WITH BLUE
EYES, BROWN HAIR AND GLASSES AND
I'M WEARING A CHECKED SHIRT AND
A DARK JACKET, AND AS DR. GORDON
MENTIONED, I AM A SENIOR POLICY
ADVISOR IN ODEP, AND A POINT FOR
MUCH OF OUR WORK ON SUPPORTING
NEURODIVERSITY IN THE WORKPLACE,
AND THE ODEP HOST FOR NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH IS BEHIND ME AS MY VIRTUAL
BACKGROUND TODAY.
AND I HAVE THAT GREAT HONOR
TODAY TO INTRODUCE OUR NEXT
PRESENTATION FROM MATHEMATICA,
WHICH WILL BE CO-PRESENTED AND
HOPEFULLY -- I DON'T DO INTROS
THAT OFTEN, I HOPE I DON'T MESS
UP ON NAMES HERE, I HAVE
PRONUNCIATION IN MY TALKING
POINTS, IT'S NOT MY GREATEST
STRENGTH IN TERMS OF PRONOUNCING
THINGS RIGHT SO I APOLOGIZE IF I
MAKE ANY MISTAKE HERE, IS DRS.
ANKITA PATNAIK AND PAUL
SHATTUCK.
AND THIS PRESENTATION WILL
DISCUSS THE OFTION OF RESEARCH
AT MATH MA KA, INCLUDING
RESEARCH ON EMPLOYMENT OF YOUNG
ADULTS ON THE AUTISM SPECTRUM.
I WOULD LIKE TO SHARE THEIR
BACKGROUNDS AND WHY AGAIN WE'RE
MAKING THIS INVESTMENT IN THE
PROJECT.
SO DR. PATNAIK IS A SENIOR
RESEARCHER AT MATHEMATICA AND
THE DEPUTY PROJECT DIRECTOR FOR
THE PROJECT.
SHE HAS A PH.D. IN ECONOMICS
FROM CORNELL UNIVERSITY AND A
MASTER'S DEGREE IN ECONOMICS
FROM UNIVERSITY OF EDINBURGH,
AND SHE HAS SERVED AS THE IMPACT
STUDY LEAD FOR THE EVALUATION OF
ODEP'S RETAINING EMPLOYMENT AND
TALENT AFTER INJURY/ILLNESS
NETWORK, OUR RETAIN PROJECT.
AMONG OTHER ROLES SHE HAS ALSO
SERVED AS EVALUATION LEAD FOR
THE INTERAGENCY PROMOTING
READINESS OF MINORS IN
SUPPLEMENTAL SECURITY INCOME
EVALUATION, OR PROMISE PROJECT,
AND D.O.L. IS ONE OF THE
DEPARTMENTS THAT HAS BEEN A
PARTNER ON THAT PROMISE PROJECT.
AND DR. SHATTUCK IS A SENIOR
FELLOW AT MATHEMATICA AND AN
EXPERT ON AUTISM IN ADULTHOOD
INCLUDING OUTCOME MEASURES AND
SUPPORTS AND SERVICES FOR
EMPLOYMENT AND COMMUNITY LIVING.
HE HAS A PH.D. IN SOCIAL WELFARE
FROM UNIVERSITY OF
WISCONSIN-MADISON AND HIS
RESEARCH FOCUSES ON MEASURING
AND IMPROVING THE PERFORMANCE
AND A EQUITY OF SYSTEMS OF CARE
FOR VULNERABLE POPULATIONS.
SE A MEMBER OF PLAT MATT KA'S
EQUITY COMMITTEE OF PRACTICE AND
ALSO THE FORMER FOUNDING LEADER
AS WAS MENTIONED EARLIER OF THE
A.J. DREXEL AUTISM INSTITUTE OUT
COME PROGRAM, THE NATIONAL DATA
CENTER AND TRANSITION PATHWAYS
COMMUNITY PARTNERSHIP
INITIATIVE.
AND THEIR PROJECT ON -- THE RAES
PROJECT THAT THEY'LL BE FOCUSING
ON IN THEIR PRESENTATION IN A
SECOND IS A CONTRACT FROM ODEP
TO MATHEMATICA, WHICH WAS
LAUNCHED IN FY 2021 AS A
COLLABORATION BETWEEN ODEP AND
MATHEMATICA AND A HISTORIC
INVESTMENT FOR US AS AN AGENCY
AT THE REQUEST OF CONGRESS AS
INDICATED BY PRIOR PRIORITIES IN
APPROPRIATIONS LANGUAGE.
THIS HISTORIC THREE-YEAR PROJECT
REFLECTS A PIONEERING INVESTMENT
BY ODEP TO EXPAND OUR KNOWLEDGE
ABOUT IMPROVING ACCESS TO
EMPLOYMENT OPPORTUNITIES FOR
DIVERSE AUTISTIC YOUTH AND YOUNG
ADULTS.
IT REPRESENTS ONE OF OUR LARGEST
PROJECTS EVER FOR THE FOCUS ON
SUPPORTING NEURODIVERSITY AT
WORK IN THE 21-YEAR HISTORY OF
THE AGENCY.
ITS FINDINGS OFFER A CRUCIAL
OPPORTUNITY TO GAIN KNOWLEDGE
THAT CAN HELP SHAPE OUR WORK TO
ADVANCE POLICIES AND PRACTICES
IN THIS SPACE TO EXPLAIN
EMPLOYMENT ACCESS FOR ALL
AUTISTIC YOUTH AND YOUNG ADULTS.
FOSTERING THE RAES PROJECT AT
ODEP HAS -- BARRIERS, APPROACHES
AND STRATEGIES FOR EMPLOYMENT
SUCCESS AND CAREER PATHWAYS.
WE HAVE PRIORITIZED LEARNING
ABOUT KEY GAPS AND DISPARITIES
ABOUT YOUTH AND YOUNG ADULTS ON
THE AUTISM SPECTRUM WHO CAN
REFLECT ASPECTS OF DIVERSITY,
EQUITY, ACCESS INCLUDING ANY USE
OF AUGMENTIVE AND ALTERNATIVE
COMMUNICATION OR AAC SYSTEMS AND
DEVICES AND DIVERSITY OF ACCESS
AND SUPPORT NEEDS INCLUDING FOR
BOTH EMPLOYMENT SUPPORTS AND
COMMUNITY AND INDEPENDENT LIVING
THAT MAY VARY WIDELY FROM
EXTENSIVE TO LESS EXTENSIVE AND
MORE MODERATE SUPPORT FOR
SUCCESS IN EMPLOYMENT
OPPORTUNITIES AND COMMUNITY
LIVING.
AND CRUCIALLY, THESE PRIORITIES
FOR THE INVESTMENT IN THE
PROJECT ALL ALIGN WITH OUR
ONGOING WORK AT ODEP FOR
DIVERSITY, EQUITY AND INCLUSION
AND ACCESSIBILITY OR DEIA AT
WORK.
I WOULD NOW LIKE TO TURN THE
MICROPHONE OVER TO MY ESTEEMED
COLLEAGUES AT MATHEMATICA SO
THEY CAN SHARE MORE ABOUT THE
RESEARCH ON AUTISM INCLUDING THE
RAES PROJECT.
THANK YOU.
>>THANK YOU SO MUCH FOR THAT
KIND INTRODUCTION.
AND IT IS A THRILL TO BE HERE.
I'VE GOT TO TELL YOU, I'M
LOOKING AT THE ROSTER OF
PARTICIPANTS, IT'S LIKE A WHO'S
WHO OF PEOPLE WHO ARE DEDICATED
AND DEDICATED TO MAKING A
DIFFERENCE IN THE WORLD AND
DEDICATED TO MAKES A DIFFERENCE
IN THE LIECHES OF AUTISTIC
PEOPLE AND THEIR COMMUNITIES.
I'M THRILLED TO BE HER HERE, ITN
HONOR, I'VE PRESENTED TO THIS
BODY BEFORE.
I WANT TO DO A QUICK SPECIAL
SHOUT OUT, I SEE ON THE ROSTER
MARCIA MALIK AND OTHERS WHERE I
REALLY GOT MY START AND TRAINING
20-PLUS YEARS AGO AND MARCIA'S
MENTORSHIP AND THE MENTORSHIP I
GOT FROM THE NETWORK REALLY
PREPARED ME FOR A LIFETIME OF
SERVICE IN THIS ARENA.
I'M SO GRATEFUL TO BE HERE AND
SHARING OUR WORK WITH YOU ALL.
SO TODAY WE'RE GOING TO TALK A
LITTLE BIT ABOUT WHO'S
MATHEMATICA AND I'LL TELL YOU A
LITTLE ABOUT OUR BACKGROUND AS A
COMPANY, WHY I LEFT ACADEMIA TO
JOIN MATHEMATICA, HOW WE
CROSSWALK SOME OF OUR WORK TO
THE STRATEGIC GOALS OF IACC.
THEN I'M GOING TO HAND IT OVER
TO MY COLLEAGUE WHO'S GOING TO
DO A SPOTLIGHT PRESENTATION ON
OUR ODEP FUNDED PROJECT AND THEN
WE'LL WRAP UP WITH A QUICK LOOK
AHEAD ABOUT WHERE WE'RE GOING
NEXT, AND ANSWER QUESTIONS,
BECAUSE I'M EAGER TO HEAR FROM
YOU ALL.
SO LET'S ROLL.
I'M NOT GOING TO READ THIS
SLIDE, BUT I'LL JUST -- I'LL
HIGHLIGHT SOME OF THE TAKEAWAYS.
SO I LEFT ACADEMIA A COUPLE
YEARS AGO TO JOIN MATHEMATICA,
WHICH IS A POLICY RESEARCH
COMPANY.
SORRY, DR. GORDON, THERE IS
ANOTHER COMPANY CALLED
MATHEMATICA THAT DOES
MATHEMATICAL SOFTWARE MODELING
BUT THAT'S A DIFFERENT COMPANY.
WE'RE A POLICY RESEARCH COMPANY.
>>SORRY!
>>IT'S OKAY, IT'S A COMMON
MIXUP.
AND WE ARE AN EMPLOYEE-OWNED
COMPANY.
AND SO IT'S A REALLY PASSIONATE
COMMUNITY, VERY DEDICATED
SCIENTISTS WHO BELIEVE IN
BUILDING EVIDENCE TO INFORM
PUBLIC POLICY.
SO THAT PUBLIC POLICY IS IN
AREAS OF EDUCATION, HUMAN
SERVICES, PUBLIC HEALTH, ARE
GROUNDED IN THE BEST AVAILABLE
EVIDENCE.
AND IT'S AN EXCITING TEAM AND
IT'S A REALLY EXCITING PLACE TO
WORK.
I DECIDED TO MAKE THE SWITCH OUT
OF ACADEMIA BECAUSE I REALLY
WANTED TO DIRECT MY CAREER IN A
WAY THAT WOULD BE EMPHASIZING
MUCH LARGER SCALE PROGRAMMATIC
IMPACT, AND SO MATHEMATICA AS A
COMPANY IS OFTEN THE GO-TO
CONTRACTOR OF CHOICE FOR
GOVERNMENT AGENCIES THAT WANT TO
DO EXTREMELY LARGE SCALE
NATIONAL EVALUATION STUDIES OF
BIG NATIONAL PROGRAMS,
ESTABLISHING NATIONAL RESEARCH
PRIORITIES IN ESSENTIAL AREAS.
WE HAVE A LOT OF WORK IN OUR
PORTFOLIO DURING THE PUBLIC
HEALTH EMERGENCY RELATED TO
CONTACT TRACING AND LEADING EDGE
WORK ON COVID AND HOW IT WAS
MAKING ITS WAY THROUGH
VULNERABLE SAFETY NET
POPULATIONS.
IT'S A REALLY EXCITING PLACE TO
WORK AND WE'RE ALL ABOUT MAKING
AN IMPACT ON PUBLIC POLICY, AND
IMPROVING THE LIVES OF CITIZENS
THROUGH RIGOROUS RESEARCH.
AND WE HAVE -- WE'RE PART OF AN
ECOSYSTEM OF PRIVATE COMPANIES
THAT DO THIS KIND OF RESEARCH,
AND I THINK OUR EMPLOYEE
OWNERSHIP IS A SIGNATURE FEATURE
THAT DISTINGUISHES US, AND
ANOTHER DISTINGUISHING FEATURE
THAT ATTRACTED ME TO MATHEMATICA
IS THAT FOR MANY YEARS, IT HAS
HAD A DISABILITY UNIT.
SO WE HAVE A COUPLE DOZEN OR
MORE RESEARCH SCIENTISTS THAT
FOCUS EXCLUSIVELY ON DISABILITY
RESEARCH AND DISABILITY POLICY
AND WORK THAT INFORMS NEW
DISABILITY POLICIES AS WELL AS
EVALUATES LARGE SCALE NATIONAL
PROGRAMS.
WE DO A LOT OF WORK WITH THE
SOCIAL SECURITY ADMINISTRATION,
WITH NIDILRR, AND OTHER AGENCIES
THAT FOCUS ON DISABILITY.
SO IT'S AN OPPORTUNITY TO KIND
OF JOIN A DREAM TEAM FULL OF
SMART PEOPLE WHO ARE PASSIONATE
ABOUT IMPROVING PUBLIC SERVICES
AND PUBLIC PROGRAMS FOR PEOPLE
WITH DISABILITIES, A CHANCE THAT
I JUMPED AT.
SO I'M GOING TO CONNECT, AS YOU
ALL KNOW, BECAUSE YOU CREATED
THE STRATEGIC PLAN, THE
STRATEGIC PLAN IS DIVIDED INTO
THESE DIFFERENT FOCAL AREAS
ORGANIZED BY QUESTIONS.
SO A LOT OF OUR WORK SORT OF
CLUSTERS UNDER QUESTION 6, WHICH
IS, HOW CAN WE MEET THE NEEDS OF
PEOPLE WITH ASD AS THEY PROGRESS
INTO AND THROUGH ADULTHOOD.
AND THEN WE ALSO -- MUCH OF OUR
WORK CAN ALSO BE CLUSTERED UNDER
QUESTION 5, WHICH IS WHAT KINDS
OF SERVICES AND SUPPORTS ARE
MAXIMIZE QUALITY OF LIFE FOR
PEOPLE ON THE AUTISM SPECTRUM.
SO SOME OF OUR RECENT AUTISM
RESEARCH, WE HAVE A COUPLE OTHER
PROJECTS BUT THESE ARE THE BIG
FLAGSHIP ONES THAT ARE IN PLAY
RIGHT NOW.
THE REYAAS PROJECT FUNDED BY
OPEN DEP WHICH WBYODEP.
THE READINESS OF MINORS WITH
AUTISM SPECTRUM DISORDER IS
SOMETHING I'LL BRIEFLY GO OVER.
IT'S A SOCIAL SECURITY
ADMINISTRATION-FUNDED PROJECT
THAT WAS PRETTY EXCITING.
OUR NEXT GEN PROJECT WHICH IS
FOCUSED ON ENHANCED EMPLOYMENT
STRATEGIES IS IN PLAY RIGHT NOW.
AND WE HAVE SEVERAL SITES AROUND
THE COUNTRY.
IT'S A LARGE SCALE DEMONSTRATION
AND EVALUATION RESEARCH PROJECT
THAT INCLUDED A SITE THAT'S
FOCUSED ON AUTISM.
THEN OUR HRSA AUTISM TRANSITIONS
RESEARCH PROJECT WHICH WE JUST
GOT RE-FUNDED FOR ANOTHER
FIVE-YEAR CYCLE.
THAT WAS A PROJECT I WAS P.I. ON
WHEN I WAS AT DREXEL, AND I
REMAIN IN CLOSE CONTACT AND WORK
UNDER A SUBCONTRACT WITH MY
FORMER COLLEAGUES AT DREXEL AND
WE SUBMITTED A RENEWAL RECOMPETE
WHICH I'M THRILLED TO SAY GOT A
PERFECT SCORE, SO WE GOT
REFUNDED FOR ANOTHER FIVE YEARS
OF HRSA WORK FOCUSED ON AUTISM
TRANSITION.
I'LL TALK VERY BRIEFLY ABOUT
THAT.
SO THE PROMISE EVALUATION WAS A
REALLY EXCITING OPPORTUNITY THAT
WAS MADE POSSIBLE BY A CONTRACT
WITH AUTISM SPEAKS.
WE HAD A LARGE -- A VERY LARGE
SCALE STUDY FUNDED ORIGINALLY BY
THE SOCIAL SECURITY
ADMINISTRATION TO EVALUATE THIS
SSA INITIATIVE CALLED THE
PROMISE INITIATIVE, AND IT JUST
HAPPENED TO INCLUDE A BUNCH OF
PEOPLE, A BUNCH OF AUTISTIC
PEOPLE IN THE DATA, BUT THE SSA
CONTRACT DID NOT PAY US TO DRILL
DOWN AND EX-AP INTHE UNIQUE
EXPERIENCE OF PEOPLE ON THE
AUTISM SPECTRUM WILL, BUT WE HAD
THE DATA, SO AUTISM SPEAKS, IN
THEIR WISDOM, WAS WILLING TO
INVEST IN THE TIME IT WOULD TAKE
TO DO THE ANALYSES AND WRITE UP
A REPORT, WHICH IS AVAILABLE ON
OUR WEBSITE.
AND IN THIS DEMONSTRATION
PROJECT, TRANSITION SERVICES
WERE PROVIDED TO OVER 12,000
ADOLESCENTS WITH DISABILITIES
WHO WERE RECEIVING SSI
SUPPLEMENTAL SECURITY INCOME.
AND ABOUT 13% OF THAT NUMBER
WERE AUTISTIC, AND SO WE DRILLED
INTO THE DATA TO LOOK AT THE
UNIQUE EXPERIENCE OF THAT SUBSET
OF PEOPLE.
WHAT WE FOUND WAS THAT THE
PROMISE PARTICIPATION --
PARTICIPATION IN THE PROMISE
PROGRAM -- SORRY IT'S A TONGUE
TWISTER, TRIPLE P, NEARLY
DOUBLED SHAIRT OF AUTISTIC JOB
WHO HELD PAID JOBS IN THE 18
MONTHS AFTER THE INTERVENTION.
AND WE'RE IN THE MIDST OF A
FIVE-YEAR IMPACT FOLLOW-UP
STUDY, SO WE'RE EXCITED TO SEE
IF THOSE EFFECTS HOLDOVER TIME,
BECAUSE WE KNOW RIGHT HERE IN
THIS ROOM, WE KNOW THAT THE
CHALLENGE IS -- THERE ARE TWO
REALLY QUITE DISTINCT
CHALLENGES.
GETTING A JOB AND KEEPING A JOB
ARE TWO DIFFERENT THINGS.
MANY AUTISTIC PEOPLE STRUGGLE
WITH BOTH.
SO ANY LINE OF WORK ON
EMPLOYMENT IN AUTISM REALLY
NEEDS TO BE LONGITUDINAL IN ITS
DESIGN, AND I'M SO GRATEFUL
AGAIN TO MARCIA AND MY
COLLEAGUES IN THE NETWORK WHO
HAVE SCHOOLED ME ON THE
IMPORTANCE OF LONGITUDINAL
COHORT RESEARCH METHODS BECAUSE
AUTISM IS A JOURNEY, IT'S NOT
A -- PEOPLE ON THE AUTISM
SPECTRUM LIKE EVERYONE ELSE
GROW, DEVELOP, CHANGE, EVOLVE
THROUGH THEIR LIFE COURSES.
SO RESEARCH ON THINGS LIKE
EMPLOYMENT REALLY NEED TO BE
LONGITUDINAL IN NATURE IN ORDER
TO CAPTURE THE UNFOLDING
TRAJECTORY AND JOURNEY OF HOW
THESE THINGS PLAY OUT OVER TIME.
SO OUR NEXT GEN PROJECT IS
FUNDED BY THE ADMINISTRATION FOR
CHILDREN AND FAMILIES, AND IT'S
KIND OF A -- IT'S A TOUGH ONE TO
CHARACTERIZE BECAUSE THE NEXT --
BY DESIGN, THE NEXT GEN
INITIATIVE MANIFESTS SOMEWHAT
THE MODEL BENEFITS A LITTLE
DIFFERENTLY SITE BY SITE.
BUT FOR EXAMPLE, WE HAVE A
BRIDGES FROM SCHOOL TO WORK
PROGRAM THAT PROVIDES INTENSIVE
EMPLOYMENT-RELATED SUPPORTS TO
STUDENTS WHO ARE IN HIGH SCHOOL,
SPECIAL ED, BOTH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES,
AND IT CREATES THESE SUPPORTIVE
SERVICES AS YOUTH ARE
TRANSITIONING OUT OF HIGH
SCHOOL.
AND SO WE DO HAVE ONE SITE
THAT'S BASED IN PHILADELPHIA
THAT INCLUDES A LARGE CONTINGENT
OF AUTISTIC YOUTH IN THE STUDY,
SO THAT'S UNDERWAY RIGHT NOW.
WE'LL BE EXCITED TO SHARE
FINDINGS FROM THAT STUDY AS THEY
EMERGE FROM THE COMING YEARS,
AND THERE'S AN IMPLEMENTATION
ASSESSMENT, A COST STUDY AS WELL
AS AN IMPACT ASSESSMENT.
SO IN OUR EXPERIENCE DURING
LARGE SCALE EVALUATIONS, IT'S
IMPORTANT TO UNDERSTAND ALL
THESE FEATURES OF AN
INTERVENTION.
NOT JUST THE -- QUOTE, THE PUNCH
LINE OF LATE, WAS THERE AN
EFFECT SIZE ON THE TARGET
POPULATION.
BUT THE IMPLEMENTATION ISSUES,
IF YOU WANTED TO SCALE THIS AND
ROLL IT OUT MORE WIDELY, WHAT
WERE THE CHALLENGES AND
LIMITATIONS THAT WOULD HAVE TO
BE ADDRESSED BY OTHERS WHO WOULD
HOPE TO REPLICATE THAT WORK,
WHAT ARE THE WAYS WE MIGHT
OVERCOME THOSE IMPLEMENTATION
CHALLENGES, AND HOW MUCH DOES IT
COST.
I THINK SOMETHING THAT IS OFTEN,
I WOULD SAY, UNDERADDRESSED AND
UNDERCONCEPTUALIZED IN A LOT OF
INTERVENTION RESEARCH IS, HOW
MUCH WILL THIS COST AND WHO'S
GOING TO PAY FOR IT IN THE LONG
RUN AND HOW WILL WE SUSTAIN THE
FINANCING OF NEW INTERVENTIONS
THAT ARE DEVELOPED WITH RESEARCH
FUNDS?
SO WE TEND TO OBSESS ON THAT
QUESTION HERE AT MATHEMATICA AND
IT'S SOMETHING WE'RE REALLY GOOD
AT, ANOTHER REASON WHY IT WAS
EXCITING TO JOIN THE TEAM HERE.
WE HAVE A NUMBER OF LEADING
ECONOMISTS IN THE DISABILITY AND
HUMAN SERVICES AREA WHO ARE JUST
EXPERTS AT THINKING ABOUT THESE
ISSUES OF COST, FINANCIAL
SUSTAINABILITY AND FINANCIAL
FEASIBILITY.
THEN OF COURSE IMPACT ANALYSIS.
DID THE PROGRAM HAVE AN EFFECT,
DID IT WORK, DID IT HAVE THE
INTENDED EFFECT, HOW BIG WAS THE
EFFECT SIZE?
OF COURSE THESE QUESTIONS ARE
ALWAYS OF INTEREST AS WELL.
THE HRSA AUTISM TRANSITIONS
RESEARCH PROJECT IS KIND OF A
MULTIFACETED PROJECT THAT'S
FUNDED THROUGH THE MATERNAL
CHILD HEALTH BUREAU, AND THE KEY
FEATURE REALLY REVOLVES AROUND
THE NATIONAL AUTISM DATA CENTER
WHEN I BUILT, AND IN THE FIRST
FIVE YEARS OF THAT FUNDED
PROJECT, IT WAS A JUGGERNAUT.
WE PRODUCED A LOT OF WORK.
WE GOT OVER 35 PUBLICATIONS, A
BUNCH MORE IN THE PIPELINE.
WE HAD A VERY STRONG EMPHASIS ON
TRAINING THE NEXT GENERATION OF
APPLIED PUBLIC HEALTH
RESEARCHERS, SO WE HAD 75 UNIQUE
AUTHORS ACROSS THOSE
PUBLICATIONS BECAUSE WE WERE
REALLY ALWAYS TRYING TO INCLUDE
TRAINEES AND DOCTORAL STUDENTS.
YOU KNOW, AGAIN, THAT WAS
SOMETHING I LEARNED AS A TRAY
FLEE, WAS THE IMPORTANCE OF
INVOLVING THE NEXT GENERATION IN
LEADERSHIP ROLES AND CONDUCTING
RESEARCH, DESIGN, ANALYSIS AND
PUBLICATION AND GRANT-WRITING TO
BUILD THAT PIPELINE OF TALENT TO
MOVE FORWARD IN THE FUTURE.
WE COVERED A LOT OF DIFFERENT
TOPICS IN THE FIRST FIVE YEARS,
RANGING FROM UNDERSTANDING THE
NATURE OF SERVICE ECOSYSTEMS AND
THE NATURE OF COLLABORATION
AMONG SERVICE PROVIDERS, LOOKING
AT HEALTH OUTCOMES, EQUITY
ISSUESMENT WE HAD A NUMBER OF
PAPERS FOCUSED ON EMPLOYMENT,
SOME POLICY PAPERS FOCUSED ON
THE IMPACT OF THE ROLLOUT OF THE
WIOA IN 2016.
MENTAL HEALTH.
YOU KNOW, MENTAL HEALTH IS STILL
SORT OF AN UND UNDERSTUDIED ARE.
IT'S STILL A FAIRLY
UNDERCONCEPTUALIZED AND
UNDERSTUDIED REALM OF ADULT
EXPERIENCE ON THE SPECTRUM.
AND THEN I THINK ONE OF THE
THINGS I'M MOST PROUD ABOUT IS I
HAD SOME COLLEAGUES, SOME
TRAINEES WHO REALLY RAN WITH THE
BALL AND PIONEERED A SERIES OF
PUBLICATIONS ON FINANCIAL
HARDSHIP AND SOCIAL SAFETY NET
PARTICIPATION.
IT HASN'T RECEIVED A LOT OF
ATTENTION BUT WE'VE FOUND THAT
ALMOST HALF OF AUTISTIC TEENS IN
THE UNITED STATES LIVE IN
EXTREMELY POOR, LOW-INCOME
HOUSEHOLDS, AND JUST OVER 1 IN N
HOUSEHOLDS AT OR BELOW THE
POVERTY LEVEL, A RATE THAT'S
MUCH HIGHER THAN THE AVERAGE
POPULATION.
ANYWAY, I'M NOT GOING TO GET
INTO THAT, BUT I WOULD LOVE TO
TALK TO FOLKS ABOUT THAT BECAUSE
THAT WAS KIND OF MY SOAP BOX.
WE DO ACBNOM H ACKNOWLEDGE HERET
MATHEMATICA THAT THE EXPERIENCE
OF HAVING A DISABILITY OFTEN
INTERSECTS IN THIS SORT OF
MULTIPLICATIVE WAY WITH OTHER
DIMENSIONS OF DISADVANTAGE
INCLUDING POVERTY AND EXCLUSION
BASED ON OTHER IDENTITIES.
SO WE HAVE A SECOND ROUND OF
FIVE-YEAR FUNDING THAT JUST
BEGAN AND WE'RE EXCITED TO
PIONEER NEW AND EXCITING
RESEARCH INCLUDING DEVELOPING
TRANSITION INTERVENTION FOR
LATINX AND HISPANIC YOUTH IN
PARTNERSHIP WITH OUR WONDERFUL
COLLEAGUE IN ARIZONA.
I'D LIKE TO MOVE ON NOW TO THE
NEXT SLIDE AND INTRODUCE MY
COLLEAGUE, ANKITA PATNAIK, WHO
WILL DO A PRESENTATION ABOUT OUR
OWODEP WORK.
I JUST WANT TO SAY THANK YOU TO
THE DEPARTMENT OF LABOR.
I WANT TO SAY WHAT A THRILL IT
IS TO SEE THE POOL OF FEDERAL
AGENCIES THAT ARE INVESTING AND
PIONEERING AUTISM RESEARCH.
THAT POOL IS DIVERSIFYING,
RIGHT, SO WE'VE GOT SSA, WE'VE
GOT ODEP, AND THIS INVESTMENT IN
PARTICULAR, IT'S A PIONEERING
INVESTMENT TO HAVE A FEDERAL
AGENCY THAT'S OUTSIDE THE USUAL
REALM OF RESEARCH SUBJECTS TO
COME IN AND INVEST IN THE TOPIC
OF EMPLOYMENT AND AUTISM.
IT A BIG MOVE, AND IT'S A VERY
LARGE INVESTMENT.
AND IT'S A REMARKABLE PROJECT
AND I JUST WANT TO THANK THE
LEADERSHIP AND THE VISION OF OUR
COLLEAGUES AT ODEP FOR TAKING
THIS BOLD STEP TO SUPPORT THIS
KIND OF RESEARCH.
ANKITA, TAKE IT AWAY.
>>THANKS VERY MUCH, PAUL.
HI, EVERYONE.
I'D LIKE TO START OFF BY JUST
SECONDING EVERYTHING PAUL SAID.
WE'RE SO GRATEFUL TO ODEP FOR
THIS INCREDIBLE OPPORTUNITY AND
THIS PIONEERING INVESTMENT ON
THIS TOPIC.
AS SCOTT MENTIONED, THE REYAAS
PROJECT BEGAN ABOUT ONE YEAR
AGO, AND WE HAVE THREE MORE
YEARS TO GO, SO I'M VERY EXCITED
TO BE SHARING SOME FINDINGS
TODAY FROM WHAT WE'VE LEARNED
DURING THE FIRST YEAR OF PROJECT
ACTIVITIES, AS WELL AS PROVIDING
AN OVERVIEW OF THE GOALS OF THE
PROJECT AND PREVIEWING SOME OF
WHAT WE HAVE PLANNED AND WHAT IS
IN THE WORKS FOR THE YEARS TO
COME.
SO WITH THAT, I WILL KICK OFF AN
INTRODUCTION TO THIS PROJECT.
WHICH AS YOU'VE HEARD A FEW
PEOPLE SAY IS NICKNAMED THE
REYAAS PROJECT.
THAT STANDS FOR RESEARCH SUPPORT
SERVICES FOR EMPLOYMENT OF YOUNG
ADULTS ON THE AUTISM SPECTRUM.
THE PROJECT IS FUNDED BY THE
U.S. DEPARTMENT OF LABOR.
I'D LIKE TO ALSO GIVE A SHOUT
OUT TO PAUL.
HE'S THE PRINCIPAL INVESTIGATOR
ON THIS PROJECT.
I AM THE PROJECT DIRECTOR AND
IT'S BEEN A REALLY WONDERFUL
PARTNERSHIP WITH PAUL AND OF
COURSE AN INCREDIBLE LEARNING
OPPORTUNITY FOR ME AS WELL.
ALL RIGHT.
SO THE REYAAS PROJECT IS REALLY
WELL CONNECTED TO QUESTION 6 IN
THE IACC STRATEGIC PLAN, WHICH
IS ABOUT SUPPORTING THE NEEDS OF
PEOPLE ON THE AUTISM SPECTRUM AS
THEY PROGRESS INTO ADULTHOOD.
THE GOALS OF THIS PROJECT ARE
SOME BIG ONES.
IT REALLY SEEKS TO UNDERSTAND
THE BARRIERS AND FACILITATORS
THAT ARE IN PLAY AS YOUNG ADULTS
ON THE AUTISM SPECTRUM ARE
TRANSITIONING FROM SCHOOL TO
WORK.
THE OBJECTIVE IS REALLY TO
IDENTIFY SPECIFIC PROGRAMS,
POLICIES, APPROACHES OR
PRACTICES THAT HAVE BEEN SHOWN
TO WORK IN FACILITATING
EMPLOYMENT FOR THIS POPULATION.
WE ALSO WANT TO TAKE STOCK OF
WHAT THE RESEARCH LITERATURE HAS
TO SAY, SO WHAT DO WE KNOW FROM
RIGOROUS EVIDENCE HAS WORKED SO
FAR, AND WHAT ARE THE GAPS IN
OUR KNOWLEDGE AND IN OUR
EVIDENCE.
AND AS A RESULT OF THAT KIND OF
TAKING STOCK AND IDENTIFICATION
OF GAPS, WE ARE WORKING WITH
ODEP TO SUGGEST NEW
EVIDENCE-BUILDING ACTIVITIES AND
OPPORTUNITIES TO PRODUCE MORE
KNOWLEDGE, MORE RIGOROUS
EVIDENCE ON WHAT CAN WORK TO
SUPPORT YOUNG ADULTS ON THE
AUTISM SPECTRUM WHO ARE SEEKING
EMPLOYMENT.
SO TO ACHIEVE THESE GOALS,
REYAAS HAS SEVERAL DIFFERENT
PROJECT ACTIVITIES.
THE FIRST SET OF ACTIVITIES IS
REALLY FOCUSED ON KNOWLEDGE
DEVELOPMENT.
AS I MENTIONED, WE CONDUCTED TWO
LARGE LITERATURE REVIEWS, WHICH
I WILL SUMMARIZE IN A FEW
MINUTES.
IN ORDER TO UNDERSTAND WHAT THE
RESEARCH LITERATURE HAS TO SAY
ON PROGRAMS THAT EXIST THAT AIM
TO SUPPORT EMPLOYMENT OUTCOMES
FOR YOUNG AUTISTIC ADULTS, AS
WELL AS WHAT WE KNOW ABOUT THE
EFFECTIVENESS OF THESE PROGRAMS.
WE ALSO VERY EXCITINGLY HELD
LISTENING SESSIONS WITH KEY
PLAYERS IN THIS SPACE, MOST
IMPORTANT OF WHICH, OF COURSE,
ARE ADULTS ON THE AUTISM
SPECTRUM THEMSELVES, SO WE HELD
PUBLIC LISTENING SESSIONS THAT
INVITED YOUNG ADULTS AND THEIR
FAMILY MEMBERS TO COME TALK TO
US AND TELL US ABOUT THEIR
EMPLOYMENT EXPERIENCES, WHAT
THEIR GOALS ARE, WHAT THEIR
PERCEIVED CHALLENGES AND IDEAS
ARE FOR HOW WE CAN SUPPORT THEIR
TRANSITION FROM SCHOOL TO WORK.
AND WE ALSO HOLD CONTINUOUS
DISCUSSION WITH A TECHNICAL
WORKING GROUP WHICH COMPRISES
EXTERNAL EXPERTS OUTSIDE OF
MATHEMATICA WHO MAY HAVE
EXPERTISE IN ADVOCACY IN THIS
SPACE, RESEARCH IN THIS SPACE,
OR OUR FEDERAL POLICY MAKERS.
WE ARE CONDUCTING ANALYSES OF
EXISTING DATA, SO WHAT
ADMINISTRATIVE AND SURVEY DATA
DO EXIST ON THIS TOPIC.
WE HAVE CREATED AN INVENTORY OF
THESE DATA SOURCES AND WE HAVE
SELECTED A DATA SOURCE TO DIVE
INTO TO GET AT SOME REALLY
INTERESTING RESEARCH QUESTIONS,
AND I WILL COVER THAT IN A
MOMENT.
IN PARTNERSHIP WITH ODEP, WE ARE
ALSO DEVELOPING OPTIONS AND
RECOMMENDATIONS FOR EVALUATION
DESIGNS, SO THIS IS AN ACTIVITY
WHERE WE ARE SUGGESTING NEW
EVIDENCE-BUILDING ACTIVITIES
THAT WOULD OCCUR OUTSIDE OF THE
REYAAS PROJECT.
SO THIS IS FOR THE FUTURE,
INCLUDING THE POSSIBILITY OF
DEMONSTRATION PROJECTS.
AN OPTIONAL TASK UNDER REYAAS IS
TO CONDUCT SURVEYS OF YOUNG
ADULTS AND STAKEHOLDERS IN THE
SPACE, WHICH INCLUDE EMPLOYERS
AND ADVOCATES, FOR EXAMPLE.
THE GOAL OF THAT ACTIVITY WOULD
BE TO CREATE A WHOLE NEW DATA
SOURCE THAT CONTAINS THE
NECESSARY INFORMATION TO REALLY
DIG INTO THIS TOPIC.
THIS WOULD BE A SURVEY DATASET
IF THE TASK IS ECK EXERCISED, IT
WOULD BE A CONTRIBUTION TO THE
RESEARCH FIELD AS IT WOULD
LIKELY BE AVAILABLE TO OTHER
RESEARCHERS IN SOME FORM AS
WELL.
AND FINALLY, OF COURSE, WE DON'T
WANT TO BE CONDUCTING OUR
RESEARCH IN ISOLATION.
IT'S ONLY USEFUL IF IT'S
SPREADING THE WORD AND INFORMING
BOTH RESEARCH AND POLICY
PRIORITIES, AND SO DISSEMINATING
THE FINDINGS AND THE INSIGHTS
THAT WE GLEANED FROM OUR
KNOWLEDGE-BUILDING AND
EVIDENCE-BUILDING ACTIVITIES IS
A VERY IMPORTANT PART OF THIS
PROJECT AS WELL.
SO AS I MENTIONED, WE CONDUCTED
A LITERATURE SEARCH THAT HAD TWO
GOALS.
THE FIRST WAS TO IDENTIFY AND
SUMMARIZE THE RANGE OF PROGRAMS,
MODELS AND STRATEGIES THAT ARE
BEING USED TO SUPPORT THE
EMPLOYMENT FOR YOUNG PEOPLE WITH
DEVELOPMENTAL DISABILITIES,
INCLUDING YOUNG AUTISTIC PEOPLE.
AND THE SECOND GOAL WAS TO
EXAMINE THE EVIDENCE ON THESE
PROGRAMS, SO WE KNOW WHAT --
FROM GOAL ONE, WE KNOW WHAT
EXISTS OUT THERE, WHAT IS BEING
DONE OUT THERE.
BUT THE SECOND GOAL IS TO REALLY
UNDERSTAND WHETHER THESE
PROGRAMS AND PRACTICES ARE
EFFECTIVE IN HELPING YOUNG
AUTISTIC PEOPLE GET EMPLOYMENT
AND KEEP EMPLOYMENT.
SO WE CONDUCTED A LITERATURE
SEARCH THAT LOOKED AT PUBLISHED
RESEARCH LITERATURE AS WELL AS
FREE LITERATURE BY RELATED
ORGANIZATIONS, AND WE IDENTIFIED
A WIDE RANGE OF ABOUT 140
PROGRAMS IN THE UNITED STATES
THAT HAVE THE GOAL OF SUPPORTING
EMPLOYMENT OUTCOMES OF YOUNG
ADULTS WITH DEVELOPMENTAL
DISABILITIES, INCLUDING YOUNG
AUTISTIC ADULTS.
MORE THAN HALF OF THESE 140 OR
SO PROGRAMS EXCLUSIVELY SERVE
YOUNG ADULTS ON THE AUTISM
SPECTRUM.
IN THIS GRAPH, YOU SEE AN
ILLUSTRATION OF THE DIFFERENT
TYPES OF STRATEGIES THAT ARE
BEING USED BY THESE PROGRAMS TO
SUPPORT EMPLOYMENT.
MANY OF THESE PROGRAMS INCLUDE
COMPONENTS SUCH AS SOFT SKILLS
TRAINING.
IT'S ONE OF THE MOST COMMON
STRATEGIES THAT'S BEING USED.
COACHING OR MENTORING, JOB
SEARCH ASSISTANCE, JOB
DEVELOPMENT AND JOB TRAINING.
THOSE ARE THREE OF THE MOST
COMMONLY USED STRATEGIES IN THE
PROGRAMS THAT WE FOUND.
BUT OF COURSE MANY OF THE
PROGRAMS COMBINE MULTIPLE
COMPONENTS.
SOME OF THESE FOCUS ON
TRANSITION PLANNING SUPPORT FOR
HIGH SCHOOL STUDENTS AS WELL.
I WANT TO FOCUS ON ONE TYPE OF
STRATEGY IN PARTICULAR, AND THAT
IS WORK EXPERIENCE.
MORE GENERALLY FROM THE RESEARCH
LITERATURE, WE HAVE FOUND THAT
WORK EXPERIENCE IS CONSIDERED AN
EVIDENCE-BASED PRACTICE TO
SUPPORT THE TRANSITION FROM
SCHOOL TO WORK FOR YOUNG PEOPLE
WITH DISABILITIES.
OF THE 140 OR SO M PRAPS PROGRT
WE FOUND, ABOUT 4 IN EVERY 10 OF
THOSE PROGRAMS INCLUDED WORK
EXPERIENCE AS A COMPONENT, AND
AS I MENTIONED, MANY OF THESE
APPROACHES COMBINE SEVERAL
STRATEGIES, SO FOR EXAMPLE,
PROGRAMS MIGHT COMBINE WORK
EXPERIENCE WITH ANOTHER SUPPORT
SUCH AS SOFT SKILLS, SUCH AS
PROVIDING PEOPLE WITH SOFT
SKILLS EXPERIENCE, SOFT SKILLS
TRAINING BEFORE OFFERING THEM A
WORK EXPERIENCE OPPORTUNITY.
WE FOUND THAT MORE THAN HALF OF
THE PROGRAMS GENERALLY PROVIDED
WORK EXPERIENCES BUT ONLY ABOUT
A QUARTER OF THE PROGRAMS THAT
ONLY SERVE YOUNG AUTISTIC ADULTS
PROVIDED WORK EXPERIENCES.
WE DID FIND THAT VERY FEW OF THE
PROGRAMS FOCUSED ON MENTAL
HEALTH SUPPORTS ON OCCUPATIONAL
TRAINING, OR ON SERVICES THAT
ADDRESSED THE EMPLOYER SIDE OF
THINGS.
SO PROGRAMS THAT AIMED TO HELP
EMPLOYERS' ABILITY TO HIRE AND
SUPPORT YOUNG AUTISTIC PEOPLE OR
YOUNG PEOPLE WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES
WHILE THEY WERE ON THE JOB.
WE ALSO FOUND MANY PROGRAMS ARE
PILOT PROGRAMS
[RECORDING STOPPED]
, THEY ARE RESOURCE-INTENSIVE,
WHICH MAKES IT CHALLENGING TO
REPLICATE THEM MORE BROADLY OR
SCALE THEM.
OTHERS FACED CHALLENGES
RECRUITING YOUTH WHILE THEY WERE
IN HIGH SCHOOL OR ESTABLISHING
PARTNERSHIPS WITH SCHOOLS THAT
MIGHT HELP WITH RECRUITMENT OR
WITH JOB PLACEMENTS.
SO OF THOSE 140 OR SO PROGRAMS,
62 STUDIES EXISTED THAT PROVIDED
EVIDENCE ON WHETHER OR NOT THESE
PROGRAMS, STRATEGIES, PRACTICES,
ET CETERA, WERE OR WERE NOT
EFFECTIVE.
17 OF THOSE 62 EFFECTIVENESS
STUDIES FOCUSED SPECIFICALLY ON
EMPLOYMENT OUTCOMES.
WE FOUND IN GENERAL, WE DON'T
KNOW A LOT ABOUT THE
EFFECTIVENESS OF THESE
STRATEGIES.
SO OF THE MANY PROGRAMS THAT WE
HAVE FOUND, THERE WERE ONLY SIX
RIGOROUS STUDIES THAT COULD
PROVIDE SORT OF --
[RECORDING IN PROGRESS]
-- STRONG EVIDENCE ON WHETHER
OR NOT THESE PROGRAMS AND
STRATEGIES WERE EVENTTIV EFFECTY
HELPING YOUNG ADULTS IMPROVE
THEIR EMPLOYMENT PROGRAMS.
SO WE DEFINED RIGOROUS
EVALUATIONS AS EITHER RANDOMIZED
CONTROL TRIALS OR QUASI
EXPERIMENTAL DESIGNS.
I'LL QUICKLY RECAP WHAT THOSE
MEAN.
A RANDOMIZED CONTROL TRIAL IS
GENERALLY WHERE YOU ENROLL A
LARGE NUMBER OF YOUNG ADULTS AND
YOU RANDOMLY ASSIGN SOME OF THEM
TO A TREATMENT GROUP WHEREIN
THEY GET THE INTERVENTION, WHICH
MEANS THEY CAN PARTICIPATE IN
THE PROGRAM OR THE STRATEGY OR
THE APPROACH, AND THE OTHERS ARE
RANDOMLY ASSIGNED TO A CONTROL
GROUP, WHERE THEY TYPICALLY
CANNOT ACCESS THE PROGRAM OR AT
LEAST CANNOT ACCESS THE PROGRAM
FOR A CERTAIN PERIOD OF TIME,
SUCH AS A WAIT LIST.
IN A QAI S QUASI EXPERIMENTAL D,
THERE'S NO RANDOM ASSIGNMENT OF
PEOPLE, HOWEVER, YOU DO COMPARE
PEOPLE WHO ARE SIMILAR IN THEIR
BASELINE CHARACTERISTICS BEFORE
THEY GET AN INTERVENTION, AND
ONLY SOME SUBSET OF PARTICIPANTS
IN THE STUDY GET THE
INTERVENTION.
SO WHEN YOU COMPARE THEIR
OUTCOMES, YOU CAN REASONABLY
ATTRIBUTE ANY DIFFERENCES IN
THEIR OUTCOMES TO BEING THE
CAUSAL RESULT OF THE
INTERVENTION THAT THEY RECEIVED.
SO WE FOUND THREE RANDOMIZED
CONTROL TRIALS THAT HAD BEEN
CONDUCTED OF A PROGRAM KNOWN AS
PROJECT SEARCH PLUS ASD
SUPPORTS.
I IMAGINE MANY OF THE PEOPLE ON
THIS CALL ARE FAMILIAR WITH THAT
MODEL.
IT IS A VARIATION OF THE PROJECT
SEARCH MODEL THAT HAS BEEN
ADAPTED SPECIFICALLY FOR YOUNG
PEOPLE ON THE AUTISM SPECTRUM,
AND IT'S A TRANSITION-BASED
EMPLOYMENT MODEL FOR HIGH SCHOOL
STUDENTS.
THOSE SHOWED PROMISING RESULTS
WITH MORE PEOPLE WHO
PARTICIPATED IN PROJECT SEARCH
HAVING EMPLOYMENT AT THE END OF
THE OBSERVATION PERIOD THAN THE
CONTROL GROUP THAT WAS NOT
PARTICIPATING IN PROJECT SEARCH
PLUS ASD.
WE ALSO IDENTIFIED TWO
RANDOMIZED CONTROL TRIALS IN A
TRAINING PROGRAM THAT SHOWED
PARTICIPANTS WERE MOSH LIKELY TO
SECURE COMPETITIVE INTEGRATED
EMPLOYMENT AT HIGHER RATES
COMPARED TO THE CONTROL GROUP.
LASTLY WE FOUND ONE QUASI
EXPERIMENTAL STUDY.
THE PROGRAM THAT WAS BEING
EXAMINED WAS ADDING SUPPORTED
EMPLOYMENT SERVICES TO
VOCATIONAL REHABILITATION
CLIENTS' EXPERIENCES, AND WE
FOUND THAT IT DID INCREASE THE
SHARE OF CLIENTS WHO ATTAINED
COMPETITIVE INTEGRATED
EMPLOYMENT.
SO AS I MENTIONED WE CONDUCTED
THESE LISTENING SESSIONS AS PART
OF OUR KNOWLEDGE DEVELOPMENT
ACTIVITIES, AND LISTENING
SESSIONS WERE HELD WITH A RANGE
OF KEY PLAYERS IN THIS SPACE.
AS I MENTIONED, WE HELD
LISTENING SESSIONS WITH YOUNG
ADULTS ON THE AUTISM SPECTRUM AS
WELL AS THEIR FAMILY MEMBERS.
WE HELD ABOUT FOUR OF THESE
SESSIONS IN SPRING 2022.
ALL ACROSS THE SESSIONS ABOUT
100 YOUNG ADULTS ON THE AUTISM
SPECTRUM JOINED US AND SHARED
THEIR VIEWPOINTS.
PARTICIPATION WAS OF COURSE
VOLUNTARY, IT WAS OPTIONALLY
ANONYMOUS.
FOLKS WERE FREE TO JOIN US ON
VIDEO IF THEY WISHED, ON AUDIO
ONLY, THEY COULD PARTICIPATE BY
CHAT IN OUR ZOOM BOX.
THEY WERE ALSO FREE TO SUBMIT
WRITTEN COMMENTS BY EMAIL.
WE HEARD SOME REALLY INTERESTING
PERSPECTIVES FROM THE YOUNG
ADULTS ON THE AUTISM SPECTRUM.
IT WAS VERY VALUABLE TO HEAR
FROM THEM IN THEIR OWN VOICES,
AND I WOULD LIKE TO SHARE JUST A
COUPLE OF THE THINGS THAT WE
HEARD FROM THEM TODAY.
ONE YOUNG ADULT SAID, "I FEEL
LIKE I FACE ADDITIONAL
CHALLENGES RELATED TO MY
POSITION IN MY SOCIETY BECAUSE
NOT EVERYBODY KNOWS HOW TO
COMMUNICATE WITH ME, AND I
CANNOT GET WHAT I NEED."
ANOTHER YOUNG ADULT SAID, "I'VE
WORKED WITH SOME PROGRAMS THAT
HAVE REALLY HELPED ME GAIN
COURAGE WHILE IN THE JOB
MARKET."
ANOTHER SAID, "PEOPLE WITH
AUTISM ARE ALSO ABLE TO MAKE
GOOD MANAGERS AND LEADERS AS
LONG AS YOU ACCEPT YOURSELF,
SURROUND YOURSELF WITH A GOOD
SUPPORTIVE SYSTEM, AND KEEP
GOING TOWARDS YOUR DREAMS."
AND FINALLY, A FOURTH QUOTE I'D
LIKE TO SHARE.
ONE YOUNG ADULT TOLD US, "I
ENJOY WORKING WITH OTHERS WHO
ARE NEURODIVERGENT, BECAUSE I
WOULD NEVER BE AS CONFIDENT OR
SUCCESSFUL IF IT WASN'T FOR
OLDER NEURODIVERGENT WORKERS WHO
TOOK ME UNDER THEIR WING AND
SHOWED ME IT WAS POSSIBLE."
I'LL NOTE WE ALSO HAD -- WHILE
THESE QUOTES ARE FROM THE YOUNG
ADULTS ON THE AUTISM SPECTRUM,
WE ALSO HAD LISTENING SESSION
WITH PROFESSIONALS WHO WORKED
WITH THEM OR WHO WORK ON THIS
TOPIC.
WE HELD FIVE SESSIONS AROUND THE
SAME TIME IN SPRING 2022.
WE SPOKE WITH ADVOCATES, WITH
FEDERAL AND STATE POLICY MAKERS,
WITH SERVICE PROVIDERS,
EDUCATORS, AND RESEARCHERS.
AND WE TRIED TO GET A BROAD
SWATH OF PEOPLE FROM ACROSS THE
UNITED STATES.
I WILL MENTION THAT THESE
LISTENING SESSIONS WERE
INCREDIBLY INFORMATIVE, AND I
THINK SO GREAT TO HAVE THE
PARTICIPATION OF OTHERS THAN
JUST RESEARCHERS ON THIS TOPIC
TO INFORM THE REST OF OUR
PROJECT ACTIVITIES.
I WILL NOTE THAT IT'S STILL A
SMALL NUMBER OF PEOPLE.
IN TOTAL, WE HAD LESS THAN 200
PEOPLE PARTICIPATING IN THESE
LISTENING SESSIONS, SO NATURALLY
WHAT WE IDENTIFIED AND WHAT WE
HEARD MAY NOT BE REPRESENTATIVE
OF ALL YOUNG ADULTS ON THE
AUTISM SPECTRUM NOR ALL THE
STAKEHOLDER IN THIS SPACE.
SO LOOKING ACROSS ALL OF THE
INPUT THAT WE RECEIVED FROM
YOUNG ADULTS AS WELL AS
STAKEHOLDERS, WE IDENTIFIED A
COUPLE OF THEMES IN WHAT WE
HEARD.
SO WE IDENTIFIED SOME THINGS
THAT WERE MENTIONED AS BARRIERS
TO EMPLOYMENT AND SOME THINGS
THAT WERE MENTIONED AS
FACILITATORS TO EMPLOYMENT.
THEY'RE ON THE SCREEN NOW, BUT I
WILL GO THROUGH THEM AS WELL.
YOUNG ADULTS OFTEN MENTION
CHALLENGES IN JOB SEARCH AND
FINDING A GOOD WORK ENVIRONMENT.
THEY ALSO MENTION BIASES IN
TYPICAL RECRUITMENT AND
INTERVIEW PROCESSES.
FOR EXAMPLE, SOME MENTIONED THAT
A TYPICAL INTERVIEW PROCESS
MIGHT, FOR EXAMPLE, REWARD
CANDIDATES FOR BEING VERY
EXPRESSIVE FOR ANSWERING
QUESTIONS ON THE SPOT, AND MIGHT
HAVE BEHAVIORAL INTERVIEWING
PROCESSES THAT MIGHT
DISADVANTAGE YOUNG ADULTS ON THE
AUTISM SPECTRUM WHO ARE VERY
QUALIFIED FOR THE JOB, AND SO
THEY ENCOURAGED MORE INCLUSIVE
RECRUITMENT, HIRING AND WORK
ENVIRONMENTS THAT WOULD BE MORE
FOCUSED ON THE ABILITY TO
COMPLETE THE TASK AT HAND RATHER
THAN BEHAVIORAL INTERVIEWING,
FOR EXAMPLE.
STAKEHOLDERS AS WELL AS YOUNG
ADULTS MENTIONED A NEED FOR
GREATER AND MORE ENHANCED
SUPPORTS AND SERVICES, SO AS
JUST ONE EXAMPLE, ADDRESSING
TRANSPORTATION BARRIERS THAT
PEOPLE MIGHT HAVE IN GETTING TO
AND FROM A SERVICE PROVIDER OR
GETTING TO AND FROM WORK.
THEY ALSO MENTIONED A NEED FOR
MORE SELF-ADVOCACY AND CAREER
ADVANCEMENT TRAINING, SO NOT
ONLY FOCUSED ON HOW TO GET A JOB
BUT HOW TO PROGRESS IN ONE'S
CAREER AS WELL.
AND VERY RESONANT WITH WHAT WE
FOUND IN THE LITERATURE REVIEW,
MANY STAKEHOLDERS MENTIONED
CHALLENGES WITH GENERALIZING AND
SCALING SERVICES BEYOND A SINGLE
COMMUNITY-BASED PILOT PROGRAM.
WE ALSO HEARD MANY POSITIVES
ABOUT FACILITATORS TO
EMPLOYMENT, SO YOUNG ADULTS AND
THEIR FAMILY MEMBERS OFTEN
TALKED ABOUT ENCOURAGEMENT AND
ADVICE FROM THEIR SUPPORT
NETWORK THAT MIGHT INCLUDE
FAMILY, FRIENDS, STAFF FROM JOB
READINESS PROGRAMS, AND HOW
HELPFUL THAT ENCOURAGEMENT AND
ADVICE WAS TO HELP THEM KEEP
GOING ON THEIR EMPLOYMENT
JOURNEY.
PAID INTERNSHIPS, CUSTOMIZED
EMPLOYMENT WERE ALL PERCEIVED AS
VERY HELPFUL BY BOTH YOUNG YOUNG
ADULTS AND STAKEHOLDERS IN THIS
SPACE.
I MENTIONED ALREADY THE CULTURAL
SHIFTS AND TRAINING FOR
EMPLOYERS IN ORDER TO HELP BUILD
AND MAINTAIN MORE INCLUSIVE WORK
ENVIRONMENTS AND HIRING
PRACTICES.
THERE ARE FACILITATORS TO
EMPLOYMENT IN TERMS OF MORE
COLLABORATION AND THE FUNDING
FOR THE NEEDED SUPPORTS.
ONE SUGGESTION WAS PARTNERING
WITH NEURODIVERGENT CONSULTANTS
OR CAREER COACHES WITH
DISABILITIES, WHICH REALLY
RESONATES WITH THE QUOTE THAT I
MENTIONED EARLIER ABOUT HAVING
THE ROLE MODELS AND MENTORSHIP
FROM OTHER NEURODIVERGENT SENIOR
FOLKS.
AND COORDINATION WITH MORE LARGE
AND ESTABLISHED PROGRAMS WAS
ALSO MENTIONED AS A FACILITATOR
TO EMPLOYMENT.
ALL RIGHT.
SO LET'S SWITCH NOW TO TALKING
ABOUT DATA.
ONE OF THE EXERCISES THAT I
PERSONALLY FOUND TO BE VERY
USEFUL AS PART OF THE REYAAS
PROJECT WAS CONDUCTING THIS SCAN
AND INVENTORY OF EXISTING DATA.
ODEP WANTED TO KNOW WHAT DATA
SOURCES EXIST TO SUPPORT
RESEARCH ON THIS TOPIC.
THE MOTIVATION FOR THIS IS
SELF-EVIDENT IN SOME WAYS ON
QUALITY DATA ARE CRUCIAL FOR US
TO RIGOROUSLY UNDERSTAND WHAT
THE NEEDS, BARRIERS AND
FACILITATORS OF EMPLOYMENT ARE
FOR YOUNG AUTISTIC PEOPLE AND TO
BUILD MORE EVIDENCE ON WHAT CAN
HELP SUPPORT THESE OUTCOMES.
SO TO SUPPORT THIS GOAL, WE
SCANNED EXISTING SURVEY AND
ADMINISTRATIVE DATA SOURCES TO
IDENTIFY A SUBSET OF SOURCES
THAT MET CERTAIN ELIGIBILITY
CRITERIA.
SO THE DATA SOURCE HAD TO
INCLUDE YOUNG ADULTS IN THE AGE
RANGE THAT WE'RE FOCUSED ON, SO
16 TO 28, AS THIS IS THE CRUCIAL
TIME OF TRANSITIONING TO
EMPLOYMENT.
IT HAD TO CONTAIN INFORMATION
THAT WOULD ALLOW US TO IDENTIFY
INDIVIDUALS ON THE AUTISM
SPECTRUM, AND IT HAD TO CONTAIN
EMPLOYMENT-RELATED MEASURES.
WE IDENTIFIED 11 SUCH DATA
SOURCES, AND THIS IS -- THIS
DATA INVENTORY IS ONLINE AND I
WILL POST A LINK TO IT IN THE
CHAT IN A MINUTE.
SO AS I MENTIONED, 11 DIFFERENT
DATA SOURCES, AND THEY HAVE EACH
DIFFERENT STRENGTHS AND
LIMITATIONS IN OUR DATA
INVENTORY DOCUMENT, WE PROVIDED
MORE DETAILS ON THINGS LIKE THE
UNIVERSE OF PEOPLE WHO ARE
CAPTURED IN THIS DATASET, THE
SAMPLE SIZES THAT YOU CAN
EXPECT, HOW YOU CAN ACCESS THESE
DATA, ET CETERA.
SO I WON'T GO INTO THE DETAILS
OF EACH AND EVERY DATA SOURCE,
BUT I WILL PROVIDE AN OVERVIEW
OF WHAT WE'VE LEARNED LOOKING
ACROSS THESE 11 DATA SOURCES.
SO ONE THING WE NOTICED WAS THAT
UNFORTUNATELY, MANY OF THESE
DATA SOURCES HAVE SMALL SAMPLE
SIZES OF PEOPLE ON THE AUTISM
SPECTRUM.
AND THAT'S BECAUSE THERE WAS NO
SINGLE DATA SOURCE THAT'S
FOCUSED ENTIRELY ON YOUNG ADULTS
ON THE AUTISM SPECTRUM.
SO IT WAS ALWAYS A SUBSET OF THE
FOLKS WHO ARE CAPTURED IN THE
DATASET.
THERE WERE A FEW EXCEPTIONS, OF
COURSE.
THEY TENDED TO BE LARGER AND
ADMINISTRATIVE DATASETS.
SO AS JUST ONE EXAMPLE, SOCIAL
SECURITY ADMINISTRATION'S
BENEFIT DATA WOULD CONTAIN
INFORMATION ON EVERYONE WHO
RECEIVES SUPPLEMENTAL SECURITY
INCOMES SSI, OR SUPPLEMENTAL
SECURITY -- SORRY -- SOCIAL
SECURITY DISABILITY INSURANCE,
SSDI, BUT OF COURSE PEOPLE WHO
RECEIVE SUCH BENEFITS ARE A
SUBSET OF ALL YOUNG ADULT ON THE
AUTISM SPECTRUM, SO THESE
DATASETS ARE TYPICALLY NOT
REPRESENTATIVE OF ALL AUTISTIC
PEOPLE.
AS JUST ONE EXAMPLE, IF YOU HAD
ACCESS TO THE SSI BENEFITS FILE,
SSI IS A MEANS-TESTED BENEFIT
THAT IS FOCUSED ON PEOPLE WITH
LOW INCOMES, AND SO YOU WOULD
NOT BE CAPTURING THE FULL
SOCIOECONOMIC DISTRIBUTION OF
YOUNG AUTISTIC PEOPLE.
I'LL ALSO NOTE THAT ACCESS TO
MANY OF THESE DATASETS IS
RESTRICTED.
SEVERAL OF THEM WERE
ADMINISTRATIVE DATASETS FROM
GOVERNMENT AGENCIES THAT YOU
WOULD NEED SPECIAL PRIVILEGES TO
BE ABLE TO ACCESS, AND OTHER
DATASETS AT A MINIMUM WOULD
REQUIRE AN APPLICATION AND A
VETTING PROCEDURE IN ORDER TO
GET TO.
MOST OF THESE DATASETS ALSO
CONTAINED LIMITED EMPLOYMENT
INFORMATION, SO THEY WOULD OFTEN
HAVE AN INDICATOR FOR WHETHER OR
NOT SOMEONE IS EMPLOYED.
THEY MIGHT CONTAIN INFORMATION
ON EARNINGS OR HOURS WORKED, BUT
THEY RARELY CONTAINED MORE
NUANCED INFORMATION ABOUT THE
EMPLOYMENT EXPERIENCE.
SO AS AN EXAMPLE, THEY RARELY
CONTAIN INFORMATION ON THINGS
LIKE THE OCCUPATION IN WHICH
SOMEONE WORKED, THE INDUSTRY IN
WHICH THEY WORKED, JOB QUALITY
MEASURES, FOR EXAMPLE, DO THEY
HAVE ACCESS TO HEALTH INSURANCE
THROUGH THEIR EMPLOYER, DO THEY
HAVE ACCESS TO PAID SICK LEAVE,
THOSE KINDS OF INFORMATION ARE
TYPICALLY NOT AVAILABLE.
THERE'S ALSO LITTLE INFORMATION
ON EMPLOYER ACCOMMODATIONS OR
WHAT SUPPORT NEEDS ARE EITHER
HELPING PEOPLE WITH EMPLOYMENT
OR ARE U UNMET SUPPORT NEEDS THT
PEOPLE WOULD BE ABLE TO HELP
THEM WITH EMPLOYMENT.
THEY DO CONTAIN OTHER
INFORMATION RELATIVE TO
EMPLOYMENT, FOR EXAMPLE, THEY
MIGHT CONTAIN HEALTH MEASURES
WHICH OF COURSE INFLUENCES
EMPLOYMENT, OPPORTUNITIES AND
CONSTRAINTS.
THEY ALSO OFTEN TYPICALLY
CONTAIN DEMOGRAPHIC INFORMATION,
WHICH WOULD ALLOW RESEARCHERS TO
CONDUCT, AS AN EXAMPLE, A
SUBGROUP ANALYSIS OR A DEEPER
DIVE INTO DISPARITIES IN
EMPLOYMENT OUTCOMES OR
EXPERIENCES.
HAVING SAID THAT, LOOKING ACROSS
THESE DATASET, THERE REALLY WAS
NO ONE DATA SOURCE THAT WAS EVEN
CLOSE TO IDEAL FOR DIVING INTO
REPRESENTATIVE, RIGOROUS STUDY
OF EMPLOYMENT EXPERIENCE AND
THEN OUTCOMES.
SO THERE IS A NEED FOR MORE
LARGE SAMPLE REPRESENTATIVE DATA
ON YOUNG ADULTS ON THE AUTISM
SPECTRUM THAT'S REALLY FOCUSED
ON EMPLOYMENT AS A DOMAIN.
ALL RIGHT.
SO WE DID PICK FROM AMONG THESE
11 DATA SOURCES ONE DATASET TO
GET ACCESS TO AND TO DIVE INTO
TO ANSWER SOME RESEARCH
QUESTIONS.
THAT DATA SOURCE WAS FROM THE
REHABILITATION SERVICES
ADMINISTRATION, SO THIS IS THE
RSA-911 DATASET SOME OF YOU
MIGHT BE FAMILIAR WITH, IT
ESSENTIALLY CONTAINS CASE
SERVICE REPORT ON PEOPLE ENGAGED
WITH VOCATIONAL REHABILITATION
AGENCIES.
SO THESE ARE POPULATION DATA.
THEY COVER ALL 78 VR AGENCIES IN
THE UNITED STATES, AND THEY
CONTAIN ALL VR APPLICANTS.
IT'S A PRETTY LARGE SAMPLE SIZE
OF YOUNG PEOPLE ON THE AUTISM
SPECTRUM.
FOR EXAMPLE, BEING BETWEEN 2017
AND 2019, WE FOUND A LITTLE OVER
170,000 YOUNG PEOPLE ON THE
AUTISM SPECTRUM HAD APPLIED TO
VR.
THE DATA ARE PRETTY RECENT.
THEY ARE ANNUAL FILES AND
THEY'RE RELEASED EVERY YEAR.
DATA AS RECENT AS, I BELIEVE,
2021 ARE NOW AVAILABLE, AND
THESE DATA ARE RELATIVELY
STRAIGHTFORWARD TO ACCESS YOU DO
HAVE TO SUBMIT AN APPLICATION
AND GET VETTED, BUT MORE
STRAIGHTFORWARD THAN SOME OTHER
ADMINISTRATIVE DATA SOURCES IN
OUR INVENTORY.
THE SAMPLE WE ARE FOCUSED ON IS
YOUNG ADULTS WHO APPLIED FOR VR
SERVICES.
WE ARE FOCUSED AS I MENTIONED ON
THE AGE GROUP OF 16 TO 28 AT THE
TIME THEY APPLIED FOR VR, AND IN
ORDER TO IDENTIFY AUTISTIC YOUNG
ADULTS, WE FOCUSED ON THE SOURCE
OF PRIMARY OR SECONDARY
IMPAIRMENT THAT IS RECORDED IN
VR CASE RECORDS.
SO THESE ANALYSES ARE CURRENTLY
UNDER WAY.
SO UNFORTUNATELY I CAN'T SHARE
FINDINGS, BUT I WILL WALK US
THROUGH THE RESEARCH QUESTIONS
THAT WE ARE EXAMINING.
THE FIRST THING WE WANTED TO
UNDERSTAND IS THE PIPELINE INTO
VR FOR YOUNG PEOPLE ON THE
AUTISM SPECTRUM.
SO WE'RE LOOKING AT WHAT ARE THE
COMMON SOURCES OF REFERRAL TO VR
FOR YOUNG ADULTS ON THE AUTISM
SPECTRUM.
WE WANTED TO UNDERSTAND, FOR
EXAMPLE, WHAT IS THE ROLE THAT
SCHOOLS ARE PLAYING AS OPPOSED
TO PERHAPS SERVICE PROVIDERS,
FAMILY AND FRIENDS, PEOPLE
APPLYING BY THEMSELVES, DOL
PROGRAMS, ESSMENTS ET CETERA.
WE WANTED TO UNDERSTAND WHAT
AGENCIES AND CONNECTIONS ARE
REALLY IMPORTANT FOR CONNECTING
YOUNG PEOPLE TO VR AGENCIES.
WE ALSO WANTED TO UNDERSTAND WHO
IS APPLYING TO VR AGENCIES.
SO WHAT ARE THE CHARACTERISTICS
OF THE YOUNG ADULTS ON THE
AUTISM SPECTRUM WHO APPLY TO VR,
AND AT THE TIME THAT THE VR
COUNSELOR DEVELOPS SOMETHING
CALLED AN INDIVIDUALIZED PLAN
FOR EMPLOYMENT, WHICH IS
SOMETHING LIKE A SERVICE PLAN,
THE VR COUNSELOR OFTEN NOTES --
I GET COMMONLY IDENTIFIED
BARRIERS TO EMPLOYMENT.
SO FOR EXAMPLE, WHETHER SOMEONE
IS AN ENGLISH LANGUAGE LEARNER
MIGHT BE SOMETHING THAT'S
RECORDED IN THEIR CASE FILE.
SO WE ALSO WANTED TO UNDERSTAND
WHAT ARE SOME OF THE COMMON
BARRIERS TO EMPLOYMENT THAT WE
SEE FOR YOUNG VR APPLICANTS ON
THE AUTISM SPECTRUM.
THEN WE WANTED TO UNDERSTAND
THEIR JOURNEY THROUGH THE VR
SYSTEM.
SO WE'RE INTERESTED IN THE TYPES
OF VR SERVICES THAT YOUNG ADULTS
ON THE AUTISM SPECTRUM ARE USING
ONCE THEY ENTER VR AGENCIES, AND
WE ALSO WANTED TO UNDERSTAND
WHAT THE OUTCOMES OF THESE VR
SERVICES ARE.
SO WE ARE LOOKING INTO THE
CHERYLS OF YOUNG ADULTS THAT
EXIT VR WITH EMPLOYMENT AND WHAT
TYPES OF EMPLOYMENT OUTCOMES
THEY MIGHT HAVE.
SO FOR EXAMPLE, WHETHER IT IS
COMPETITIVE INTEGRATED
EMPLOYMENT OR SUPPORTED
EMPLOYMENT, ET CETERA.
WE WANTED TO UNDERSTAND
VARIATION IN THESE EXPERIENCES
AND OUTCOMES, SO WE'RE GOING TO
BE LOOKING AT HOW PATTERNS PLAY
OUT IN THESE REFERRALS,
CHARACTERISTICS AND OUTCOMES IN
TERMS OF VARIATION ACROSS
STATES, SO GEOGRAPHIC, AS WELL
AS COMPARING YOUNG ADULTS ON THE
AUTISM SPECTRUM COMPARED TO
OTHERS INCLUDING INTELLECTUAL
DISABILITY AND ALL OTHER YOUNG
CLIENTS WITH VR DISABILITY.
WE ALSO WANTED TO UNDERSTAND
VARIATION WITHIN AUTISTIC YOUNG
ADULTS SO WE WILL BE LOOKING AT
PATTERNS AS THEY VARY ACROSS
AGE, SO YOUNGER CLIENTS, PERHAPS
THOSE WHO APPLY WHEN THEY'RE 18
TO 20 VERSUS 20 TO 28, VARIATION
IN SEX, SO MALES VERSUS FEMALES,
AND VARIATION BY RACE OR
ETHNICITY.
FINALLY, WE'RE CONNECTING SOME
VERY EXPLORATORY ANALYSES TO
LOOK INTO HOW THE COVID-19
PANDEMIC MIGHT HAVE CHANGED
THINGS.
SO WE'RE LOOKING TO SEE WHETHER
THE PATTERNS IN VR APPLICATIONS,
THE NUMBER OF YOUTH THAT GO FROM
FROM APPLYING TO VR TO ACTUALLY
RECEIVING SERVICES AND THE SHARE
THAT EXIT WITH EMPLOYMENT MIGHT
DIFFER IN THE PERIOD BEFORE THE
PANDEMIC VERSUS DURING THE
PANDEMIC IN 2020.
ALL RIGHT.
AS I MENTIONED, THOSE ANALYSES
ARE CURRENTLY UNDERWAY.
THE REPORT FROM THAT ANALYSIS
WILL BE AVAILABLE IN EARLY 2023,
SO I HOPE YOU ALL WILL LOOK OUT
FOR THAT.
WITH THAT, I WILL TURN THINGS
BACK TO PAUL.
>>THANK YOU, ANKITA.
SO WE'VE JUST GOT TWO QUICK
SLIDES LEFT IN WRAP-UP.
WE TOUCHED ON A FEW OF THESE.
I DON'T WANT TO BELABOR THIS
SLIDE, BUT TWO POINTS BEAR
REPEATING HERE.
IN THE WORLD OF SERVICES
RESEARCH, AND POLICY RESEARCH ON
AUTISM TO DATE, THERE'S VERY
INCONSISTENT AND INFREQUENT
ATTENTION TO ISSUES OF EQUITY
AND THE LIFE COURSE PERSPECTIVE.
AND AGAIN, THIS LIFE COURSE
PERSPECTIVE, WHICH IS SO PROM
NEBT IN DEVELOPROMINENT IN DEVEL
RESEARCH AND WHAT I TRAINED IN
AND THAT SO MANY CH YOU HAVE
PIONEERED REALLY IN YOUR
DEVELOPMENTAL RESEARCH ON
AUTISM.
THAT LIFE COURSE PERSPECTIVE IS
STILL NOT WELL INTEGRATED INTO
APPLIED WORK ON POLICY AND
PROGRAM IMPACT ANALYSIS.
SO THAT'S SOMETHING THAT WE'RE
EAGER TO CHAMPION, IS HOW TO
REALLY INTEGRATE AND UNIFY A
LIFE COURSE DEVELOPMENTAL
PERSPECTIVE WITH AN INTERVENTION
IN POLICY RESEARCH PERSPECTIVE.
AND THEN THERE REMAINS KIND OF A
LACK OF ACKNOWLEDGMENT AND
UNDERSTANDING AND REALLY A
METHODOLOGICAL APPROACH FOR
UNDERSTANDING THE COMPLEXITY OF
THE SERVICE ECOSYSTEM EXPERIENCE
THAT MANY AUTISTIC PEOPLE AND
THEIR FAMILIES HAVE TO NAVIGATE.
SO YOU KNOW, AUTISM HARDLY EVER
COMES BY ITSELF.
MOST PEOPLE ON THE SPECTRUM ALSO
HAVE OTHER STUFF GOING ON,
HEALTH ISSUES, PHYSICAL HEALTH
ISSUES, LEARNING CHALLENGES, AND
MANY PEOPLE OR MOST PEOPLE
REALLY ON THE SPECTRUM ARE
SIMULTANEOUSLY TRYING TO
NAVIGATE ENGAGEMENT WITH
DIFFERENT SERVICE ECOSYSTEMS,
DIFFERENT SECTORS, EDUCATION,
LET CARE, MENTAL HEALTHCARE,
EMPLOYMENT, HOUSING, YOU KNOW,
THE LIST GOES ON.
AND WE STILL DON'T HAVE A REALLY
GREAT METHODOLOGICAL TOOLKIT OR
CONCEPTUAL FRAMEWORK FOR MAKING
USEFUL AND INSIGHTFUL
CONCLUSIONS ABOUT THAT
COMPLEX -- THE COMPLEX NATURE OF
THAT JOURNEY.
SO THAT'S ANOTHER AREA THAT
WE'RE EAGER TO CONTRIBUTE TO IN
OUR WORK HERE AT MATHEMATICA.
AND ANOTHER GAP THAT WE'RE
TRYING TO STEP INTO RIGHT NOW IS
THAT THE FIELD OF AUTISM
RESEARCH HAS THUS FAR BEEN KIND
OF SLOW TO RESPOND TO THINGS
LIKE THE COVID PUBLIC HEALTH
EMERGENCY AND GROWING RISK OF
THINGS LIKE CLIMATE CHANGE.
SO WE HAVE SOME SEED MONEY WE'RE
USING TO DELVE INTO BOTH THOSE
TOPICS RIGHT NOW USING MEDICAID
DATA, AND WE'RE GOING TO BE
CHARTING AND PUBLISHING A REPORT
ON HOW THE PANDEMIC KIND OF MADE
ITS WAY THROUGH THE MEDICAID
POPULATION OF FOLKS ON THE
AUTISM SPECTRUM, BOTH CHILDREN
AND ADULTS, AND THEN WE'RES AREO
BEGINNING TO PREPARE THE DATA
FOR LINKING TO CLIMATE RISK DATA
LIKE WILDFIRE AND HEAT WAVE DATA
TO UNDERSTAND HOW CLIMATE CHANGE
IS SLOWING UP AS A RISK FOR
HEALTH AND DEVELOPMENT AMONG
YOUNG ADULTS ON THE SPECTRUM.
SO LOOKING AHEAD, WE REALLY WANT
TO BE PIONEERING AND LEADING ON
THIS INTEGRATION OF THINGS THAT
ARE OFTEN TREATED SEPARATELY.
EQUITY, THE LIFE COURSE
PERSPECTIVE, THE SOCIAL
DETERMINANTS OF HEALTH
PERSPECTIVE, AND THE APPLIED
RESEARCH AND POLICY AND PROGRAM
EVALUATION PERSPECTIVE.
SO AS WE MOVE FORWARD WITH
BUILDING THIS PROGRAM, WE'RE
SUPER EAGER -- WE'RE A HIGHLY
COLLABORATIVE WORK SETTING AND
WE COLLABORATE ALL THE TIME WITH
ACADEMIC PARTNERS, FOUNDATION
PARTNERS, WITH OTHER COMPANIES
AND GOVERNMENT AGENCIES AS WELL.
SO JUST KNOW THAT WE'RE EAGER TO
COLLABORATE.
WE'RE REALLY PASSIONATE ABOUT
THIS WORK AND EXPANDING THE WORK
HERE AT MATHEMATICA, AND WE HAVE
A TREMENDOUS INFRASTRUCTURE THAT
OFTEN COMPLEMENTS THE STRENGTHS
THAT MANY UNIVERSITY
INVESTIGATORS HAVE WITH OUR
CAPACITY FOR LARGE SCALE
RESEARCH OF BIG QUESTIONS AND
BIG PROGRAMS THAT ARE ACROSS --
REALLY ACROSS A NATIONAL AND
INTERNATIONAL SCALE.
ANOTHER THING THAT WE'RE QUITE
PASSIONATE ABOUT, OFTENTIMES
RESEARCH ON EMPLOYMENT AND
INTERVENTIONS IN THE AUTISM
SPACE FOCUS ON DEVELOPING A NEW
APPROACH OR A NEW PROGRAM MODEL,
WHICH IS AWESOME.
WE NEED MORE OF THAT, THAT'S
GREAT.
BUT ANOTHER COMPLEMENTARY
PERSPECTIVE IS HOW DO WE TAKE --
BECAUSE THE CHALLENGE, RIGHT,
WHEN YOU'RE DEVELOPING A NEW
PROGRAM OR A NEW INTERVENTION
MODEL, LET'S SAY IT WORKS, THEN
YOU'RE LIKE, OH, GOSH, HOW ARE
WE GOING TO SCALE THIS, WHO'S
GOING TO PAY FOR IT, WHERE WILL
IT BE IMPLEMENTED, WHO WOULD
IMLEMIMPLEMENT IT?
A LOT OF THOSE SCALING QUESTIONS
ARE OFTEN UNDERCONCEPTUALIZED AT
THE OUTSET OF INTERVENTION
RESEARCH, SO WE'RE ALSO TRYING
TO TACKLE THIS CHALLENGE FROM
THE OTHER DIRECTION, WHICH IS
SAYING, WELL, WE HAVE
INFRASTRUCTURE THAT'S ALREADY AT
SCALE, AND HOW CAN WE MAKE
INFRASTRUCTURE AND PROGRAMS THAT
ARE ALREADY AT SCALE MORE
SUCCESSFUL AT INCLUDING AND
HELPING AUTISTIC PEOPLE?
SO FOR EXAMPLE, WE HAVE SOCIAL
SAFETY NET PROGRAM, WHICH ARE
VITAL, THEY'RE A LIFE LINE FOR
PEOPLE ON THE AUTISM SPECTRUM
AND THEIR FAMILIES.
AND EMPLOYMENT PROGRAMS LIKE JOB
CORPS AND AMERICAN JOB CENTERS
ALREADY AT SCALE SERVING TENS OF
THOUSANDS OF YOUTH, HOW CAN WE
MAKE THEM MORE SUCCESSFUL AT
INCLUDING AUTISTIC ADULTS?
I'M GOING TO CONCLUDE THERE, AND
THANK YOU ALL SO MUCH FOR YOUR
TIME THIS MORNING, AND IT REALLY
A TREAT TO BE HERE AND I THINK
WE HAVE TIME FOR A COUPLE
QUESTIONS.
>>WELL, THANK YOU VERY MUCH,
DR. SHATTUCK AND DR. PATNAIK.
WE HAVE JUST A FEW MOMENTS FOR
QUESTIONS OR COMMENTS FROM
MEMBERS OF THE COMMITTEE.
SO I'LL ASK YOU EITHER TO SEND
THEM TO SEND COMMENTS HERE.
I HAVE TWO HANDS RAISED ALREADY,
AND SO PROBABLY THAT'S ALL WE'LL
GET TO, BUT IF YOU'D LIKE TO TRY
TO TALK AFTER THAT, PLEASE RAISE
YOUR HAPPENED.
WE'RE GOING TO START WITH YETTA
MYRICK AND THEN DENA GASSNER.
YETTA.
>>THANK YOU FOR YOUR
PRESENTATION AND ALL YOUR WORK.
I HAVE SO MANY QUESTIONS BUT
YOU'VE ANSWERED SOME OF THEM, SO
THAT'S GOOD, I WON'T WASTE A LOT
OF TIME, COULD YOU SPEAK ABOUT
HOW DIVERSE THE PARTICIPANTS
WERE IN YOUR LISTENING SESSION?
BECAUSE YOU MENTIONED, YOU KNOW,
THE EQUITY PIECE AND MAKING SURE
THAT THESE PROGRAMS ARE
ACCESSIBLE TO DIFFERENT GROUPS
OF PEOPLE, SO COULD YOU SPEAK TO
THAT?
AND THEN ALSO, YOU NOTED ABOUT
HOW YOU WERE LOOKING AT THE VR
PROGRAMS, BUT I WONDER IF THERE
IS ANY THOUGHT ABOUT LOOKING AT
THE PRE-EMPLOYMENT TRANSITION
SERVICES, WHICH ARE A PRECURSOR
TO VR SERVICES, AND HOW -- LIKE
INVESTIGATING THAT TO SEE WHAT
ACCESS LOOK LIKE.
SO I WAS JUST CURIOUS TO KNOW IF
YOU ARE PLANNING ON
INVESTIGATING THAT AS WELL.
THANK YOU.
>>ANKITA, CAN YOU HANDLE THESE
ONES?
>>YES, HAPPY TO.
CAN YOU ALL HEAR ME OKAY?
>>YES.
>>GREAT.
YEAH, THAT'S A GREAT QUESTION
ABOUT THE LISTENING SESSION
PARTICIPANTS.
SO WE MADE A VERY CONCERTED
EFFORT TO TRY TO CAST A WIDE NET
TO ENROLL PEOPLE, SO ESPECIALLY
FOR THE STAKEHOLDER LISTENING
SESSION, WE WERE VERY
INTENTIONAL ABOUT, FOR EXAMPLE,
YOU KNOW, CAPTURING PEOPLE AT
UNIVERSITIES IN DIFFERENT PARTS
OF THE UNITED STATES.
SERVICE PROVIDERS FROM DIFFERENT
STATES, ET CETERA.
OF COURSE IMPOSSIBLE TO BE
REPRESENTATIVE UNLESS YOU HAVE A
VERY LARGE SAMPLE OF THINGS,
RIGHT.
FOR THE PUBLIC LISTENING
SESSIONS, WE ALSO CAST A WIDE
NET.
WE ESSENTIALLY PUT AN OPEN CALL,
USED TWITTER, SOCIAL MEDIA,
INSTAGRAM, ALSO USED OUR
NETWORKS TO TRY TO SPREAD THE
WORD USING THE SNOWBALLING
APPROACH, ET CETERA.
WE DID NOT SYSTEMATICALLY
COLLECT INFORMATION ON RACE AND
ETHNICITY.
IT WAS OPTIONAL BECAUSE WE DID
NOT WANT TO MAKE IT A
REQUIREMENT THAT WOULD
DISINCENTIVIZE PEOPLE FROM
PARTICIPATING, FOR EXAMPLE.
SO I CAN CERTAINLY CHECK WITH
DOL ABOUT SHARING SOME OF THE
INFORMATION THAT WE DO HAVE, BUT
I'LL CAVEAT, IT DIDN'T CAPTURE
EVERYBODY WHO PARTICIPATED
BECAUSE WE DIDN'T WANT TO SCARE
ANYONE OFF FROM PARTICIPATING BY
MAKING IT A DATA REQUIREMENT.
>>I GET THAT, THANK YOU.
AND THEN TO MY SECOND
QUESTION --
>>YETTA, I'M GOING TO ASK THAT
WE MOVE ON TO DENA.
IF WE HAVE TIME, WE'LL CIRCLE
BACK TO YOU, ALL RIGHT?
>>OKAY, THANK YOU.
>>DENA.
>>HI, FOLKS.
THANK YOU SO MUCH FOR ALL OF
YOUR WORK.
I JUST -- IF I'M ONLY GOING TO
GET ONE QUESTION, I'M GOING TO
ASK ONE THING, I'M GOING TO ASK
FIRST, CAN WE GET ALL YOUR
CITATIONS, BUT SECONDLY, I'M
GOING TO SAY THAT WHILE I
APPRECIATE ALL OF THIS, I AM
GRAVELY CONCERNED THAT WE HAVE
AN ENTIRE COMMUNITY OF
WORKFORCE-READY INDIVIDUALS WHO
HAVE EXPERIENCED REPEATED
EMPLOYMENT FAILURES DUE TO NOT
EVEN HAVING A DIAGNOSIS
AVAILABLE TO THEM, THAT WE'RE
NOT TALKING ABOUT TODAY.
WE'RE TALKING ABOUT YOUNG
ADULTS, AND I HAVE ONE OF THOSE
AND, YOU KNOW, I FEEL THAT VOC
REHAB IS REALLY NOT PREPARED TO
HELP MIDDLE-FUNCTIONING PEOPLE
FIND EMPLOYMENT.
EVERYTHING IS EITHER TASK-DRIVEN
OR VERY LABOR-DRIVEN WORK.
THERE'S NOTHING IN THE MIDDLE,
THERE'S NO PHLEBOTOMY JOBS, IF
YOU WILL, AND THEY DON'T HAVE
THE ABILITY TO MAKE THAT HAPPEN
WHERE WE'VE BEEN.
WE'VE BEEN IN FIVE DIFFERENT
STATES.
BUT I'M VERY CONCERNED THAT
WE'RE NOT INVESTIGATING PEOPLE
BETWEEN THE AGES OF 30 AND 60,
WHO WOULD REALLY LIKE TO BE IN
THE WORKPLACE AND HAVE JUST
NEVER HAD A REAL MEANINGFUL
OPPORTUNITY.
WHAT ARE WE GOING TO DO ABOUT
THEM F YOU DO, IF YOU DON'T MIN?
THANK YOU.
>>WELL, IN 10 WORDS OR LESS --
THAT'S A BIG QUESTION, DENA.
AND THANK YOU, AS ALWAYS, I LOVE
YOUR PROVOCATIVE THOUGHT PROCESS
AND ADVOCACY FOR ASKING THE BIG
QUESTIONS.
I CAN'T REALLY ADDRESS THAT
QUESTION IN THE MINUTE THAT I'VE
GOT HERE.
BUT I WOULD LOVE TO TAKE THIS
CONVERSATION OFFLINE WITH YOU
AND GET YOUR THOUGHTS ON, LIKE,
HOW WE CAN INFUSE SOME OF THAT
THINKING INTO OUR WORK HERE AT
MATHEMATICA.
>>MUCH APPRECIATED.
THANK YOU, PAUL.
>>SURE.
>>THANKS.
AND THEN I BELIEVE STEVEN HAS A
COMMENT THAT WAS PUT INTO THE
TEXT, AND THEN WE'LL END THIS
PORTION OF THE MEETING.
GO AHEAD, STEVEN.
>>HI THERE, THIS IS STEVEN.
I HAVE A COMMENT FROM LINDSEY
NEBEKER.
SHE SAYS, THANK YOU FOR YOUR
PRESENTATION.
IN REGARDS TO THE YOUNG ADULTS
ON THE AUTISM SPECTRUM WHO ARE
CAPTURED IN THE DATA INVENTORY
YOU COLLECTED.
ARE YOU ABLE TO PROVIDE MORE
INFORMATION ON THE DEMOGRAPHICS
OF SUPPORT NEEDS?
ARE YOU ABLE TO PROVIDE AN
APPROXIMATE PERCENTAGE OF
PARTICIPANTS WHO ARE
NON-SPEAKING, REQUIRE A SUPPORT
COACH OR JOB COACH, AND
PARTICIPANTS WITH HIGH SUPPORT
NEEDS?
ARE THERE ANY STRATEGIES YOU
HAVE IN PLACE TO CAPTURE MORE
REPRESENTATION OF AUTISTIC YOUNG
ADULTS WITH COMPLEX SUPPORT
NEEDS IN YOUR RESEARCH EFFORTS
IN RELATION TO EMPLOYMENT
BARRIER, RECRUITMENT AND
OUTCOMES?
>>THAT'S A REALLY GOOD
QUESTION.
I CAN TAKE THAT, PAUL.
SO I WOULD BE DELIGHTED TO SHARE
THE DATA INVENTORY WITH YOU IN
THE CHAT.
THERE IS NOT A LOT OF
INFORMATION OUT THERE ON THE
SUPPORT NEEDS OF YOUNG AUTISTIC
ADULTS.
AS I MENTIONED, NONE OF THE DATA
SOURCES ARE SORT OF FOCUSED ON
AUTISM SO THE TYPES OF QUESTIONS
THAT THEY ASK ON A SURVEY, FOR
EXAMPLE, AREN'T REALLY FOCUSED
ON AUTISM.
THE ADMINISTRATIVE DATASETS, YOU
KNOW, DON'T CAPTURE INFORMATION,
FOR EXAMPLE, THAT COULD IDENTIFY
SOMEONE WHO IS MINIMALLY VERBAL
OR NON-VERBAL EITHER.
SO THAT IS DEFINITELY A GAP IN
THE DATA THAT EXISTS.
I'LL NOTE HERE, I MENTIONED AT
THE TOP OF MY PRESENTATION THAT
THERE ARE SURVEYS THAT
MATHEMATICA MIGHT BE CONDUCTING
OF YOUNG ADULTS ON THE AUTISM
SPECTRUM AND THAT IS VERY MUCH
ON OUR RADAR AS AN ELEMENT THAT
WE SHOULD BE CAPTURING.
IT'S VERY HARD TO ADDRESS ANY
QUESTION JUST GIVEN THE NATURE
OF AUTISM, IT WOULD BE A
DISSERVICE TO COLLECT NEW
INFORMATION WITHOUT REALLY
CAPTURING THE SPECTRUM OF
SUPPORT NEEDS THAT PEOPLE HAVE,
SO UNFORTUNATELY THAT DOESN'T
EXIST IN THE EXISTING DATA
SYSTEMATICALLY, BUT SHOULD WE BE
COLLECTING NEW DATA ON OUR
SURVEYS IS DEFINITELY SOMETHING
WE'LL BE PAYING ATTENTION TO.
>>THANK YOU VERY MUCH, DRS.
PATNAIK AND SHATTUCK FOR YOUR
PRESENTATIONS TODAY FOR THE
ONGOING RESEARCH THAT'S SO
IMPORTANT.
YOU HEARD HOW THERE'S A HUNGER
NOT JUST IN TERMS OF WHAT YOU'RE
ALREADY DOING BUT IN EXPANDING
RESEARCH INTO THE ROLES AND
MECHANISMS OF IMPROVING
EMPLOYMENT IN INDIVIDUALS WITH
AUTISM, SO THANKS FOR COMING TO
US AND TELLING US WHAT YOU ARE
DOING.
AND THAT GIVES US FOOD FOR
THOUGHT AS WE MOVE FORWARD.
AND I APOLOGIZE TO YETTA AND
OTHER MEMBERS OF THE COMMITTEE
WHO MIGHT HAVE LIKED TO ADD
ADDITIONAL QUESTIONS, BUT WE ARE
RUNNING A BIT OVER.
WE'RE GOING TO TAKE A BREAK NOW.
WE'RE GOING TO TAKE A 10-MINUTE
BREAK.
WE'LL BE BACK AT 11:35.
AND FOR THE NEXT SEGMENT OF OUR
MEETING TODAY.
SO COMMITTEE MEMBERS ARE WELCOME
TO TURN OFF THEIR VIDEOS.
PLEASE STAY ON THE ZOOM SO THAT
WE DON'T HAVE ANY TROUBLE
GETTING BACK IN FOR TECHNICAL
REASONS.
WE'LL SEE YOU ALL IN 10 MINUTES.
WELCOME BACK.
IT IS 11:35 AND WE'RE GOING TO
GET STARTED.
SUSAN, YOU'RE GOING TO GIVE US
THE NATIONAL AUTISM COORDINATOR
UPDATE.
AS I MENTIONED EARLIER,
DR. DANIELS IS THE ACTING HHS
NATIONAL AUTISM COORDINATOR.
SUSAN, TAKE US AWAY.
>>THANK YOU.
SO YES, I WILL BE TAKING YOU
THROUGH AN UPDATE ABOUT
ACTIVITIES GOING ON AROUND THE
FEDERAL GOVERNMENT AND ACROSS
THE BROADER COMMUNITY JUST TO
GET US ALL ON THE SAME PAGE.
SO I'M GOING TO SHARE A FEW
NON-GOVERNMENTAL UPDATE,
ALTHOUGH I WILL HAVE TO SAY THAT
A COUPLE OF THESE ARE FUNDED BY
FEDERAL SOURCES AND I WILL SHARE
THAT WITH YOU.
SO FIRST I WANTED TO MENTION
THAT THERE'S BEEN THE LAUNCH OF
A NEW PODCAST CALLED THE BLACK
FEATHERS PODCAST.
THIS HAS BEEN FUNDED THROUGH THE
ACL IN THE STATE OF THE STATES
AND DEVELOPMENTAL DISABILITIES
PROJECTS OF NATIONAL
SIGNIFICANCE.
AND THIS PODCAST HAS CO-HOST
CRYSTAL HERNANDEZ, WHO IS THE
MOTHER OF A CHILD ON THE AUTISM
SPECTRUM AND A PERSON WHO
PRACTICES AS A PSYCHOLOGIST, AND
SHAUNA HUMPHREYS.
THEY DISCUSS DISABILITY-RELATED
TOPICS OF INTEREST TO TRIBAL
COMMUNITIES THROUGH DATA,
STORYTELLING AND INNOVATIVE
CONTENT.
THIS PODCAST EMBRACES DIVERSITY,
EQUITY AND HONOR WITHIN TRIBAL
NATIONS SO WE ENCOURAGE YOU TO
CHECK IT OUT OR PASS IT ALONG TO
PEOPLE WHO MAY BE INTERESTED.
ALSO WANT TO MENTION THAT THE
AUTISM SCIENCE FOUNDATION HAS
LAUNCHED A DIRECTORY TO HELP
PEOPLE IN THE AUTISM COMMUNITY
IDENTIFY STUDIES THEY MIGHT LIKE
TO PARTICIPATE IN.
SO WE'VE PROVIDED HERE THE
INFORMATION ABOUT THAT.
IT'S ON THEIR WEBSITE AND
THERE'S A LINK IN THE SLIDE SET
THAT WILL BE POSTED AFTER THE
MEETING.
I ALSO WANTED TO BRING YOUR
ATTENTION TO A MEETING THAT
HAPPENED OVER THE SUMMER THAT
WAS SPONSORED BY AUTISM SPEAKS.
THEIR THOUGHT LEADERSHIP SUMMIT
ON AUTISM AND AGING WHICH
RELATES TO SOME OF THE CONTENT
WE'RE GOING TO TALK ABOUT IN THE
AFTERNOON.
AND SO IN JUNE, AUTISM SPEAKS
HOSTED THE SUMMIT, BRINGING
TOGETHER FAMILIES, AUTISTIC
ADULTS, RESEARCHERS AND POLICY
MAKERS TO DISCUSS ISSUES FACING
AUTISTIC ADULTS AS THEY AGE.
AND THIS WAS AN INTERESTING
MEETING.
WE HAVE A PHOTO HERE OF CHRIS
SMITH, OUR CONGRESSMAN WHO SPOKE
AT THE MEETING.
WE'D ENCOURAGE YOU TO CHECK IT
OUT.
THE LINK IS PROVIDED HERE AND IT
ON THEIR WEBSITE TOO, IF YOU'D
LIKE TO WATCH THAT MEETING.
AND JUST YESTERDAY, THE STANFORD
NEURODIVERSITY SUMMIT ENDED, BUT
WANTED TO BRING THAT TO YOUR
ATTENTION TO THOSE WHO MIGHT BE
INTERESTED IN THIS
NEURODIVERSITY SUMMIT.
IT WAS AVAILABLE FOR A NOMINAL
FEE.
I KNOW THAT THEY'RE GOING TO BE
POSTING THE VIDEOS ONLINE.
I'M NOT SURE IF YOU HAVE TO PAY
THE NOMINAL FEE TO SEE THE
VIDEOS OR IF THEY'LL BE POSTED
FOR FREE, BUT THE EVENT DETAILS
ARE ON THIS LINK AND IF YOU GO
TO THEIR WEBSITE, YOU CAN FIND
IT, BUT MANY OF YOU MAY BE
INTERESTED IN THAT AS WELL.
I WANTED TO MENTION IS THAT
UPCOMING IS HEALTH EQUITY,
SERVING THE WHOLE PERSON, THIS
IS GOING TO FEATURE SOME OF THE
RESEARCH FUNDED BY ACL, HRSA AND
NIH, SEVERAL DIFFERENT UCEDDs,
LEND PROGRAMS, IDDRCs AND THE
DEVELOPMENTAL BEHAVIORAL
PEDIATRICS PROGRAM.
SO PLEASE CHECK IT OUT IF YOU
ARE INTERESTED AND THE
CONFERENCE SCHEDULE AND
REGISTRATION DETAILS ARE
AVAILABLE ON THIS LINK THAT'S
PROVIDED.
SO NOW I'M GOING TO SHARE SOME
FEDERAL UPDATES.
SO FIRST, JUST RECAPPING WHAT WE
HEARD THIS MORNING FR.
THE PRESIDENTIAL PROCLAMATION IS
LINKED HERE.
OUR OFFICE, THE OFFICE OF
RESEARCH COORDINATION AND ON THE
IACC WEBSITE HAS A PAGE FOR
NDEAM WHERE WE'VE LISTED A LOT
OF DIFFERENT EVENTS AND NEWS
ITEMS FROM AROUND THE COUNTRY
ABOUT NDEAM, SO YOU CAN GO THERE
AND PROBABLY FIND VIDEOS AS WELL
FOR THINGS THAT HAVE ALREADY
HAPPENED, AND THE DEPARTMENT OF
LABOR'S NDEAM PAGE IS ALSO
LINKED HERE.
SO WE'D ENCOURAGE YOU TO CHECK
THAT OUT TO SEE WHAT'S BEEN
GOING ON WITH THAT OVER THIS
PAST MONTH. AND IT'S RESULTED IN
MULTIPLE WORKING GROUPS,
COMMITTEES, INITIATIVES,
REPORTS, AND SO THEY'RE COMING
OUT AT A FAIRLY FAST CLIP.
I WILL TRY TO IN THESE UPDATES
FROM TIME TO TIMESHARE SOME OF
THE IMPORTANT REPORTS THAT ARE
COMING OUT THAT DO INCLUDE
INFORMATION ABOUT PEOPLE WITH
DISABILITIES.
BUT IT'S ALSO CREATING NEW
OPPORTUNITIES FOR DISABILITY,
DISABILITY EMPLOYMENT, AND
NEURODIVERSITY INITIATIVES, AS
WELL AS CONSIDERATION OF ISSUES
OF INTERSECTIONALITY WITH RACE,
GENDER AND OTHER CATEGORIES.
SO RECENTLY, APRIL 2022, BECAUSE
WE LAST MET THEN, THERE WAS A
REPORT THAT WAS PUT OUT BY THE
EQUITABLE DATA WORKING GROUP
BASED ON THE EXECUTIVE ORDER
13985, AND THIS REPORT TALKS
ABOUT USING DATA THAT THE
FEDERAL GOVERNMENT IS COLLECTING
TO HELP SERVE PEOPLE FROM
UNDERSERVED GROUPS.
AND HOW WE CAN COLLECT BETTER
DATA AND ENHANCE OUR DATA
RESOURCES.
AND SO THIS REPORT INCLUDES
INFORMATION ABOUT DATA ON PEOPLE
WITH DISABILITIES, AND THE LINK
IS PROVIDED HERE IF YOU'RE
INTERESTED IN CHECKING OUT THAT
REPORT.
LAST YEAR I DIDN'T REPORT OUT
THIS REPORT IN THE IACC MEETING
BUT THERE WAS ANOTHER REPORT
THAT CAME OUT, THE
GOVERNMENT-WIDE STRATEGIC PLAN
TO ADVANCE DIVERSITY, ECK WITH
EQUITY,INCLUSION AND ACCESS IBI.
I'D ENCOURAGE YOU TO CHECK THAT
OUT.
IT TALKS MORE ABOUT THE STRATEGY
FOR THE ENTIRE FEDERAL
GOVERNMENT AS THE NATION'S
LARGEST EMPLOYER TO ENHANCE ITS
INCLUSION OF UNDERSERVED GROUPS
IN THE FEDERAL WORKFORCE AND HOW
TO BETTER ACCOMMODATE AND
STRENGTHEN THE WORK THAT WE'RE
DOING TOGETHER.
SO WITH THAT, I'LL MOVE ON TO
THE NEXT ITEM, WHICH IS A REPORT
THAT CAME OUT RECENTLY ON
IMPROVING INFRASTRUCTURE FOR
PEOPLE WITH ID DLSH DD, THIS WAS
DEVELOPED BY THE ASSISTANT
SECRETARY FOR PLANNING AND
EVALUATION AT THE U.S.
DEPARTMENT OF HEALTH AND HUMAN
SERVICES.
THIS IS ON SHORT-TERM
OPPORTUNITIES FOR IMPROVING
PATIENT-CENTERED OUTCOMES
RESEARCH DATA INFRASTRUCTURE
THAT ADDRESSES NEEDS OF
INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES,
SO I'VE PROVIDED THE LINK WHERE
YOU CAN DOWNLOAD IF YOU'RE
INTERESTED IN THAT.
AND WE WILL HEAR A LITTLE BIT
MORE FROM ALICE LATER IN THE
ROUND ROBIN, BUT NIH MADE A
LARGE AWARD OF $100 MILLION NOT
TO ONE PLACE BUT FOR SEVERAL
AWARDS, FOR NINE DIFFERENT
AWARDS UNDER THE AUTISM CENTERS
OF EXCELLENCE PROGRAM.
AND WE'VE LINKED HERE TO THE
PRESS RELEASE ABOUT THAT.
AND YOU WILL HEAR MORE FROM
NICHD, AND THIS PROGRAM IS
SUPPORTED BY NICHD, NIMH, NIEHS,
NIDCD AND NINDS THAT ARE ALL ON
THIS COMMITTEE.
ALSO WITH THE AGENCY FOR
RESEARCH -- THEY'RE SEEKING
INPUT ABOUT PERSON-CENTERED CARE
FOR PEOPLE AT RISK FOR OR LIVING
WITH MULTIPLE CHRONIC
CONDITIONS.
AND COMMENTS ARE DUE BY NOVEMBE.
THOSE OF YOU WHO WOULD BE
INTERESTED IN THAT, THERE IS
MORE INFORMATION AVAILABLE
ONLINE AND WE HAVE A LINK FOR
THAT.
AND THIS WILL INFORM THEIR WORK
AS AN AGENCY AND THEIR RESEARCH
AGENDA.
THE INTERAGENCY COMMITTEE ON
DISABILITY RESEARCH ALSO HAS HAD
A NUMBER OF DIFFERENT ACTIVITIES
RECENTLY, INCLUDING THE RELEASE
OF A NEW TOOLKIT, GETTING THE
MOST OUT OF STAKEHOLDER
ENGAGEMENT, WHICH IS A TOOLKIT
TO BETTER UNDERSTAND AND MEASURE
ENGAGEMENT WITH PEOPLE ACROSS
THE COMMUNITY.
AND THE LINK IS THERE FOR THAT
AND THEY ALSO HAVE HELD A NUMBER
OF LUNCH AND LEARN WEBINARS, AND
ONE THAT IS LINKED HERE
UNDERSTANDING AND RESPONDING TO
CULTURAL AND LINGUISTIC
DIFFERENCES IN THE CONDUCT OF
DISABILITY RESEARCH WITH
PROFESSOR TAWARA GOODE IS ONE
THAT I ACTUALLY HAD THE
PRIVILEGE OF MODERATING AND WAS
AN EXCELLENT WEBINAR, AND I'D
ENCOURAGE ANYONE WHO'S
INTERESTED IN INTERSECTIONALITY
BETWEEN DISABILITIES AND OTHER
CATEGORIES TO WATCH THAT
WEBINAR.
THE RAISE FAMILY CAREGIVERS
ADVISORY COUNCIL IS OF INTEREST
TO PEOPLE ON THIS COMMITTEE,
ESPECIALLY WITH CONCERN TO
FAMILY CAREGIVERS OF PEOPLE WITH
DISABILITIES, AND THEY RECENTLY
HAD PUBLISHED THEIR 2022
NATIONAL STRATEGY TO SUPPORT
FAMILY CAREGIVERS, AND THEY PUT
THE COMPLETED NATIONAL STRATEGY
UP ONLINE FOR PEOPLE TO ACCESS
AND TO ALSO PROVIDE PUBLIC
COMMENT THROUGH NOVEMBER 30TH,
AND I'D REALLY ENCOURAGE PEOPLE
FROM THIS COMMITTEE WHO ARE
INTERESTED IN CAREGIVER ISSUES
TO LOOK AT THIS AND SUBMIT THEIR
PUBLIC COMMENTS ON THIS REPORT.
AND THE COMMENTS WILL BE USED TO
CONTINUE -- THEIR REPORT WILL
CONTINUE TO BE A LIVING
DOCUMENT, THEY'LL CONTINUE
UPDATING IT AND THEY'RE ALSO
CONNECTING WITH THE SUPPORT
GRANDPARENTS RAISING
GRANDCHILDREN COUNCIL ON THEIR
EFFORTS.
THE FEDERAL PARTNERS IN
TRANSITION IS ANOTHER FEDERAL
WORK GROUP MANAGED BY THE
DEPARTMENT OF LABOR.
THIS IS FOCUSED ON YOUTH WITH
DISABILITIES AND THEY ARE DOING
A NUMBER OF THINGS INCLUDING
CONTINUING TO WORK ON THEIR
STRATEGIC PLAN.
THEY JUST HELD A MY FUTURE
MATTERS SYMPOSIUM.
THIS WAS AN IN-PERSON.
I DON'T BELIEVE THERE IS A
RECORDING OF IT, BUT WE CAN
ALWAYS CHECK IN WITH DEPARTMENT
OF LABOR TO SEE IF THERE IS ANY
INFORMATION ABOUT IT.
BUT THAT WAS A RECENT EVENT THAT
THEY HELD AND THEY ARE
CONTINUING TO WORK ACTIVELY ON
THEIR STRATEGIC PLAN.
THE PRESIDENT'S COMMITTEE FOR
PEOPLE WITH INTELLECTUAL
DISABILITIES, OR P CPID, HELD
THEIR FIRST MEETING IN THE
SUMMER, IN JULY, AND DISCUSSED
HOME AND COMMUNITY-BASED
SERVICES, EMPLOYMENT, EDUCATION,
HOUSING AND DIRECT SUPPORT
PROFESSIONAL WORKFORCE.
SO THE MEETING MATERIALS ARE
PROVIDED ON THEIR WEBSITE FOR
PEOPLE WHO WANT TO FOLLOW THAT,
AND THANK YOU FOR BEARING WITH
ME WITH ALL THESE.
I JUST WANT YOU ALL TO BE AWARE
OF THE BREADTH OF ALL THE
DIFFERENT EFFORTS GOING ON
ACROSS THE GOVERNMENT, BECAUSE
WE ARE TRYING TO STAY
COORDINATED AND NOT BE
DUPLICATIVE.
THE NATIONAL COUNCIL ON
DISABILITY, WITH I IS AN
INDEPENDENT FEDERAL AGENCY
FOCUSED ON DISABILITY, THEY JUST
HELD THEIR QUARTERLY BUSINESS
MEETING AND THEY DIDN'T HAVE
ANYTHING THAT WAS HIGHLY
RELEVANT TO OUR COMMITTEE RIGHT
NOW, BUT WE LIKE TO KEEP YOU
POSTED ON THAT.
SAME WITH SOME OF THESE OTHER
COMMITTEES.
THE ISMIC HAS A MEETING COMING
UP LATER THIS WEEK.
AND THEIR AGENDA IS UP.
THE DISABILITY ADVISORY
COMMITTEE OF THE FEDERAL
COMMUNICATIONS COMMISSION IS
ALSO GOING TO BE HELD SHORTLY ON
NOVEMBER 1ST.
AND THE NATIONAL ADVISORY
COMMITTEE ON INDIVIDUALS WITH
DISABILITIES AND DISASTERS,
WANTED TO MAKE SURE YOU GOT AN
UPDATE ON THEM.
THEY HAD A MEETING ON
AUGUST 4TH, AND WE WILL CONTINUE
TO KEEP TABS ON THEM AND MAKE
SURE WE'RE COORDINATING ON ANY
INFORMATION ABOUT PEOPLE WITH
DISABILITIES I AND DISASTERS.
SO WITH THAT, I AM FINISHED WITH
THE UPDATE FROM THE NATIONAL
AUTISM COORDINATOR AS THE ACTING
NATIONAL AUTISM COORDINATOR.
ARE THERE ANY QUESTIONS BEFORE
WE MOVE ON?
TO THE NEXT SECTION
OF OUR MEETING?
OKAY, NOT HEARING ANY, SO
HOPEFULLY THAT WAS CLEAR AND THE
SLIDES WILL BE AVAILABLE.
AND I HOPE THAT THAT LIVES YOU A
SENSE OF ALL THE DIFFERENT
EFFORTS THAT ARE GOING ON AND
WE'RE TRYING TO MAKE SURE THAT
WE ARE KEEPING TABS ON THINGS
THAT ARE REALLY IMPORTANT TO OUR
COMMITTEE AND THE WORK THAT
WE'RE DOING ON OUR STRATEGIC
PLAN.
SO THEN I'LL GO AHEAD AND MOVE
INTO THE COMMITTEE BUSINESS FOR
TODAY.
SO I'M GOING TO GIVE YOU AN
UPDATE ON THE IACC PORTFOLIO
ANALYSIS, THE IACC SUMMARY OF
ADVANCES PROJECTS, AND THEN
WE'LL MOVE INTO A DISCUSSION OF
THE IACC STRATEGIC PLAN.
SO FIRST OFF, AN UPDATE ON THE
IACC PORTFOLIO ANALYSIS REPORT,
WHICH YOU ALL KNOW IS A REPORT
THAT PROVIDES COMPREHENSIVE
INFORMATION ABOUT AUTISM
RESEARCH FUNDING FROM ACROSS
FEDERAL AGENCIES AND PRIVATE
RESEARCH ORGANIZATIONS IN THE
U.S.
AND WE ALSO TRACK PROGRESS ON
THE STRATEGIC PLAN OBJECTIVES OR
RECOMMENDATIONS IN OUR STRATEGIC
PLAN.
WE ALSO PROVIDE ANALYSIS OF
FUNDING TRENDS OVER TIME, AND
WE'VE BEEN TRACKING THIS
INFORMATION FOR MANY YEARS, AND
SO WE DO SOME COMPARISON AND
PROVIDE TRENDS.
AND WE ALSO PROVIDE PROGRESS
TOWARD THE BUDGET RECOMMENDATION
IN THE STRATEGIC PLAN.
SO WE ARE CURRENTLY IN THE
PROCESS OF THE FINAL STAGES OF
PREPARING THE 2019 AND 2020 IACC
PORTFOLIO ANALYSIS REPORT, AND
OUR PLAN WILL BE TO PRESENT THIS
TO YOU IN JANUARY SO YOU CAN SEE
THE RESULTS OF THIS REPORT, AND
THERE ARE SOME REALLY
INTERESTING FINDINGS THAT ARE A
LITTLE DIFFERENT FROM PREVIOUS
YEARS AND WE ARE LOOKING FORWARD
TO SHARING THAT WITH YOU AT THE
JANUARY MEETING.
AND WE HAVE ALSO LAUNCHED THE
DATA CALL FOR THE 2021 IACC
PORTFOLIO ANALYSIS REPORT, AND
APPRECIATE DIFFERENT FEDERAL
AGENCIES AND PRIVATE
ORGANIZATIONS THAT HAVE SHARED
THEIR DATA WITH US, AND WE WILL
CONTINUE TO COLLECT THAT
INFORMATION AND WORK ON THE NEXT
REPORT.
SO WE ALWAYS HAVE THEM IN
PROGRESS.
NEXT LET'S TALK ABOUT THE IACC
SUMMARY OF ADVANCES.
SO SINCE WE LAST MET, WE
PUBLISHED THE IACC SUMMARY OF
ADVANCES FOR 2020, SO YOU ALL
CONTRIBUTED YOUR NOMINATIONS AND
VOTED ON THAT, AND THEN WE
PREPARED THE REPORT.
AND IT WAS ISSUED IN JUNE OF
2022.
AND THIS PROVIDES LAY-FRIENDLY
SUMMARIES OF 20 OF THE MOST
SIGNIFICANT ADVANCES IN ASD
BIOMEDICAL AND SERVICES RESEARCH
THAT YOU ALL SELECTED BY VOTE,
AND THE FINAL REPORT IS
AVAILABLE ONLINE AND FOR THE
FIRST TIME BASED ON FEEDBACK
FROM THE COMMITTEE, OUR TEAM
PREPARED AN EASY-READ VERSION OF
THE SUMMARY OF ADVANCES, AND WE
PLAN TO DO THAT GOING FORWARD
FOR OUR MAJOR DOCUMENTS.
SO YOU CAN ACCESS THIS ONLINE.
AND WE ENCOURAGE YOU TO LOOK AT
IT AND CONGRATULATIONS TO ALL
THE RESEARCHERS WHOSE RESEARCH
IS FEATURED IN THE REPORT,
INCLUDING SOME MEMBERS OF OUR
COMMITTEE.
SO AFTER THIS, WE'RE STILL
CATCHING UP A LITTLE BIT ON THE
SUMMARY OF ADVANCES.
THERE ARE A COUPLE OF YEARS THAT
WE ARE NOT QUITE CAUGHT UP ON SO
WE HAVE 2021 AND 2022.
SO LET ME UPDATE YOU ON WHERE WE
ARE WITH 2021.
SO THE STEPS OF THE PROCESS ON
THIS SLIDE, WE'VE GONE THROUGH
THE FIRST THREE.
SO WE'VE NOMINATED THE ARTICLES,
DISCUSSED THEM AT THE COMMITTEE
MEETING, AND ALSO WE DID AN
ONLINE DISCUSSION, WHICH WE'VE
SHARED THAT INFORMATION ON OUR
WEBSITE SO THAT IT'S TRANSPARENT
TO PEOPLE WHICH WE JUST DID SO
THAT WE COULD TRY TO CATCH UP.
AND THE IACC MEMBERS HAVE NOW
VOTED ON THE TOP 20 ARTICLES.
SO OUR OFFICE IS CURRENTLY IN
THE PROCESS OF PREPARING
SUMMARIES AND THE DRAFT
PUBLICATION.
SO WE ARE WORKING ON THAT, AND
WE WILL GIVE YOU A PREVIEW OF
THE DRAFT LATER THIS FALL, AND
BE PREPARING THE FINAL
PUBLICATION FOR EARLY 2023 AND
HOPEFULLY MAYBE AT THE JANUARY
MEETING, WE'RE ABLE TO SHARE THE
FINAL PUBLICATION OR SOON
THEREAFTER.
SO IN FRONT OF US RIGHT NOW IS
TO WORK THE 2022.
SO THE WORK ON 2021 FOR THE
COMMITTEE IS MOSTLY DONE AT THIS
POINT.
SO WE'RE MOVING ON TO 2022,
TRYING TO CATCH UP TO THE
PRESENT MOMENT.
SO I JUST SENT OUT A DATA CALL
TO EVERYONE ON THIS COMMITTEE
THIS WEEK AS YOUR FIRST DATA
CALL FOR 2022, AND WOULD ASK
THAT COMMITTEE MEMBERS CONSIDER
RESEARCH ARTICLES THAT HAVE BEEN
PUBLISHED IN 2022 THAT YOU THINK
ARE SIGNIFICANT AND YOU'D LIKE
TO NOMINATE FOR CONSIDERATION,
AND YOU CAN BASICALLY SEND THOSE
ON A ROLLING BASIS BETWEEN NOW
AND JANUARY 6TH, AND WE WILL
SEND YOU A COUPLE OF REMINDERS
TO PROMPT YOU TO THINK ABOUT
RESEARCH ARTICLES THAT YOU'VE
READ THAT YOU THINK ARE WORTHY
OF NOMINATION.
AND WE WILL PLAN TO DISCUSS THEM
AT OUR JANUARY MEETING, AND THEN
ALLOW YOU TO VOTE AND PUBLISH
THE FINAL REPORT IN THE SPRING.
AND AT THAT POINT, WE WILL BE
CAUGHT UP.
SO AS I SAID, OUR ACTION ITEMS
ARE -- I WILL BE SENDING YOU A
PREVIEW OF THE 2021 IACC SUMMARY
OF ADVANCES TO LOOK AT, AND IF
YOU DO HAVE ANY COMMENT OR
CORRECTION, WE CAN TAKE THOSE
INTO ACCOUNT BEFORE WE PUBLISH
THE FINAL REPORT AND THE EASY
READ VERSION.
AND THEN FOR THE TIME BEING
BETWEEN NOW AND EARLY JANUARY,
PLEASE SUBMIT YOUR NOMINATIONS
FOR 2022.
SO ARE THERE ANY QUESTIONS ABOUT
THE SUMMARY OF ADVANCES?
DENA?
>>JUST AN OBSERVATION.
I KNOW I MIGHT SOUND LIKE A
BROKEN RECORD, BUT I CAME ACROSS
A DISSERTATION BY A WOMAN NAMED
KATIE SAVIN, WHO EXAMINED WHAT
IT IS LIKE FOR DISABLED PEOPLE
TO LIVE ON SOCIAL SECURITY.
AND HER FINDINGS FOUND THINGS
THAT WE AT THE GRASSROOTS LEVEL
WELL KNOW ABOUT USING SEX WORK,
USING BARTERING, WORKING UNDER
THE TABLE, LIVING FAR BELOW THE
POVERTY LINE AS SOME OF THE
OUTCOMES THAT PEOPLE ARE LIVING
WITH IN REGARD TO THEIR LOW
INCOME ON SOCIAL SECURITY.
AND I -- I KNOW WE ARE VERY MUCH
SUPPORTIVE OF MORE QUANTITATIVE
RESEARCH, BUT I JUST HAVE TO
SAY, THOSE FINDINGS ARE
INSTRUMENTALLY VALUABLE AND I
WOULD JUST LIKE TO ADVOCATE FOR
US TO AT LEAST OPEN ONE TO THREE
SLOTS SPECIFICALLY FOR THIS KIND
OF GROUNDBREAKING QUALITATIVE
RESEARCH.
I KNOW THE SAMPLES ARE SMALL,
BUT I THINK THAT THEY SHOULD BE
INFORMING FURTHER QUANTITATIVE
BIG DATA RESEARCH.
SO THAT'S MY PITCH FOR THE DAY.
THANKS FOR LISTENING.
>>THANK YOU.
SO QUALITATIVE RESEARCH IS
WELCOME.
WE DO TRY TO LIMIT TO PUBLISHED
RESEARCH IN JOURNALS, BUT IF
THIS RESEARCH IS GOING TO BE
PUBLISHED IN A JOURNAL UPCOMING,
WHICH OFTENTIMES PEOPLE WITH
DISSERTATIONS DO PUBLISH IN A
JOURNAL AS A PART OF THEIR WORK,
WE CAN CONSIDER IT FOR THIS.
WE ALSO, IF YOU FEEL THAT -- IF
THAT DISSERTATION IS PUBLISHED
AT THIS POINT, YOU CAN SEND IT
FORWARD TO US FOR CONSIDERATION
FOR MENTION IN THE STRATEGIC
PLAN BECAUSE THAT'S A LITTLE BIT
OF A DIFFERENT KIND OF DOCUMENT,
AND WE CAN INCLUDE DIFFERENT
KINDS OF CITATIONS THERE.
>>I JUST THROW IT OUT FOR ITS
VALUE AND AS AN EXAMPLE.
I'M NOT SUGGESTING WE SHOULD
HAVE DISSERTATIONS REPRESENTED
HERE, BUT I'M JUST THROWING IT
OUT AS HOW CRITICALLY VALUABLE
THE INFORMATION SHE GLEANED WAS
IN TERMS OF INFORMING BIG
DATASETS.
SO THANK YOU.
>>THANK YOU.
YES.
SO QUALITATIVE RESEARCH IS
CERTAINLY ACCEPTABLE AND
WELCOME, SO PLEASE DON'T
HESITATE TO SEND STUDIES THAT
ARE QUALITATIVE IN NATURE.
ALL RIGHT.
SO THEN I WILL MOVE ON TO THE
STRATEGIC PLAN DISCUSSION TO
GIVE US SOME TIME TO TALK ABOUT
THIS AND BRING YOU UP TO DATE ON
WHERE WE ARE ON THE STRATEGIC
PLAN PROCESS.
I'M GOING TO RECAP THE STEPS, I
KNOW IT'S LENGTHY AND WE'VE BEEN
WORKING ON IT FOR OVER A YEAR
AND JUST AGAIN WANT EVERYBODY TO
BE ON THE SAME PAGE ABOUT WHERE
WE ARE.
SO LAST OCTOBER THROUGH
NOVEMBER, OUR OFFICE COLLECTED
INPUT ON THE STRATEGIC PLAN FROM
THE GENERAL PUBLIC IN A REQUEST
FOR INFORMATION.
AND RESULTS OF THAT RFI WERE
PRESENTED AT THE JANUARY 2022
IACC MEETING.
IN NOVEMBER THROUGH MARCH --
WELL, NOVEMBER 2021 TO
MARCH 2022, WE ALSO COLLECTED
INPUT ON THE STRATEGIC PLAN FROM
IACC MEMBERS THROUGH A SURVEY.
AND THE RESULTS OF THAT SURVEY
WERE SHARED AT THE APRIL MEETING
AND ARE POSTED ONLINE.
WE ALSO NEXT IN APRIL TO JUNE
PREPARED THE FIRST DRAFT OF THE
STRATEGIC PLAN WHICH WAS SLAIRED
WITSHAREDWITH THE COMMITTEE OVEE
SUMMER.
WE HELD A MEETING IN JULY WHERE
MANY, MANY MEMBERS OF THE
COMMITTEE WERE ABLE TO MAKE TO
THAT WORKING GROUP MEETING AND
DISCUSS YOUR INPUT ON THE FIRST
DRAFT OF THE IACC STRATEGIC PLAN
AND THAT WAS A VERY HELPFUL AND
PRODUCTIVE MEETING WHERE WE GOT
A LOT OF INPUT AND WE REALLY
APPRECIATE EVERYONE'S ACTIVE
PARTS PAIGHTS IPARTICIPATION IN.
AFTER THAT MEETING, THE NEXT
STEP WE TOOK IS JULY THROUGH
SEPTEMBER, IACC MEMBERS
RESPONDED TO ANOTHER SURVEY THAT
COLLECTED INPUT ON OTHER ASPECTS
OF THE STRATEGIC PLAN THAT
HADN'T ALREADY BEEN DISCUSSED,
AS WELL AS LEFT ROOM FOR OTHER
COMMENTS TO BE SHARED, AND THOSE
SURVEY RESULTS ARE POSTED ONLINE
FOR THIS MEETING, HOWEVER, WE'VE
ALREADY INCORPORATED THOSE TO
OUR BEST ABILITY IN THE CURRENT
DRAFT.
SO WE HAVE ON OUR TEAM PREPARED
A REVISED DRAFT OF THE STRATEGIC
PLAN AND WITH THIS, WE DID HAVE
OUR TEAM DO THE HEAVY LIFTING OF
WRITING, TAKING INTO ACCOUNT ALL
OF YOUR COMMENTS, COMMENTS WE'VE
GOTTEN FROM THE PUBLIC, THE RFI,
TO TRY TO PREPARE A DRAFT THAT
REFLECTS A COLLECTIVE VIEW FROM
ALL OF THE INFORMATION THAT
WE'VE BEEN ABLE TO GATHER.
THIS HAS BEEN POSTED ON OUR
WEBSITE PRIOR TO THIS MEETING,
SO ANYONE WHO'S INTERESTED, YOU
CAN GO TO THE MEETING PAGE AND
YOU'LL SEE A LISTING PAGE OF ALL
OF THE CHAPTERS OF THE STRATEGIC
PLAN WE HAVE AVAILABLE NOW FOR
REVIEW.
SO IACC MEMBERS, I KNOW YOU HAVE
RECEIVED THIS.
IT'S A VERY LENGTHY DOCUMENT, I
DON'T EXPECT PEOPLE HAVE READ IT
VERBATIM, BUT YOU WILL HAVE
ADDITIONAL TIME TO LOOK AT IT
AND PROVIDE US WITH INPUT.
WE WILL PROVIDE YOU WITH ANOTHER
FORUM, SO WE WILL CREATE ANOTHER
SURVEY DOCUMENT AND THE REASON
THAT WE DO THIS TO COLLECT DATA
IS THAT WE DON'T WANT TO LOSE
EMAILS LIKE IF YOU JUST EMAILED
TO ME, IF I'M GETTING EMAIL FROM
40 PEOPLE, I DON'T WANT ANYTHING
GETTING LOST AND IT ALSO ALLOWS
US TO BIN SOME OF THE COMMENTS
TO WHICH PART OF THE STRATEGIC
PLAN THEY BELONG TO AND IT'S
EASIER FOR OUR WHOLE TEAM TO BE
ABLE TO COLLECT IT BECAUSE IT
ENDS UP IN A SPREADSHEET THAT
MAKES IT EASY FOR US TO MAKE
SURE THE COMMENTS ARE GOING TO
THE RIGHT PLACE IN THE STRATEGIC
PLAN.
SO BEAR WITH ANOTHER SURVEY,
HOWEVER, THIS ONE WILL BE FAIRLY
SIMPLE.
IT WILL JUST ALLOW YOU TO
PROVIDE INPUT ON THE DIFFERENT
CHAPTERS OF THE STRATEGIC PLAN.
SO WITH THAT, OUR TEAM IN
DECEMBER WILL PLAN TO PROVIDE
YOU WITH THE REVISED VERSION OF
THE STRATEGIC PLAN AFTER WE
COLLECT YOUR INPUT ON THIS
VERSION, AND WE WILL PROVIDE YOU
WITH A NEW VERSION BEFORE THE
JANUARY 2023 MEETING WHICH IS
HAPPENING ON JANUARY 18TH, AND
WE HOPE THAT WILL BE THE FINAL
PLAN THAT WE WILL BE ABLE TO
APPROVE.
SO ANY QUESTIONS ABOUT THE
PROCESS?
SO WE'VE MADE A LOT OF PROGRESS
AND I KNOW THAT IT HAS BEEN
LENGTHY.
HOWEVER, WE DO HAVE A LOT OF
INPUT THAT WE'RE TRYING TO PUT
TOGETHER TO MAKE SURE THIS PLAN
IS COMPREHENSIVE AND UP TO DATE
TO WHERE WE ARE TODAY.
SO TO GIVE YOU AN UPDATE ON THE
CONTENTS OF THE IACC STRATEGIC
PLAN, THERE ARE SOME DIFFERENT
THEMES AND ISSUES THAT WE'VE
EMPHASIZED IN THE STRATEGIC
PLAN, INCLUDING MAJOR RESEARCH
SERVICES AND POLICY ISSUES.
WE'VE ALSO INCLUDED THE NEED --
THE INCREASED NEED FOR INCLUSION
IN RESEARCH, INCLUDING
COMMUNITY-BASED PARTICIPATORY
RESEARCH, WHICH WE'VE HEARD FROM
MEMBERS OF THE COMMITTEE AND THE
COMMUNITY ABOUT.
WE ALSO HAVE TAKEN A DELIBERATE
APPROACH TO ADDRESS THE WHOLE
SPECTRUM AND THE WHOLE LIFESPAN,
AND INCLUDING THOSE WITH HIGH
SUPPORT NEEDS.
WE'VE BEEN VERY COMMITTED TO
EQUITY AND REDUCING STIGMA,
DISPARITIES AND DISCRIMINATION,
WHICH WE'VE HEARD ABOUT FROM
THIS COMMITTEE AS BEING A VERY
HIGH PRIORITY, AND I JUST
MENTIONED TO YOU THE DEIA
EFFORTS ACROSS THE FEDERAL
GOVERNMENT, AND THESE ARE IN
STEP WITH THAT SET OF
PRIORITIES, AND WE'RE MAKING
EVERY EFFORT TO TRY TO RAISE
UNDERSTANDING AND AWARENESS THAT
THE COMMITTEE DOES STAND
TOGETHER IN A COMMITMENT TO
EQUITY.
ALSO, UPDATING YOU ON THE
RESEARCH PORTFOLIO AND BUDGET
RECOMMENDATIONS SO YOU WILL SEE
IN THE DRAFT WE HAVE NOW, WE DO
HAVE SOME INFORMATION ABOUT THE
RESEARCH PORTFOLIO ANALYSIS THAT
WE'RE GOING TO BE SHARING WITH
YOU IN JANUARY.
AND THE NEW BUDGET
RECOMMENDATION THAT I'LL SHARE
WITH YOU TODAY THAT YOU ALL
CONTRIBUTED TO.
AND MAJOR FEDERAL ACTIVITIES AND
INITIATIVES AND INTERAGENCY
COORDINATION TO GIVE A PICTURE
OF WHAT'S GOING ON.
SO YOU HAVE ONLINE, YOU'VE
RECEIVED THE CORE CHAPTERS OF
THE PLAN THAT HAVE BEEN UPDATED
OR CREATED INCORPORATING YOUR
FEEDBACK, INCLUDING CHAPTER 1 OR
QUESTION 1, WHICH IS ON
SCREENING AND DIAGNOSIS.
CHAPTER 2, WHICH IS ON BIOLOGY.
AND WE DID SURVEY YOU ON THE
TITLES FOR THIS CHAPTER AND
THERE REALLY WAS JUST NO
AGREEMENT ON ANYTHING NEW, SO WE
WILL BE STICKING WITH BIOLOGY.
CHAPTER 3, GENETIC AND
ENVIRONMENTAL FACTORS.
CHAPTER 4 IS INTERVENTIONS.
CHAPTER 5 IS SERVICES AND
SUPPORTS.
CHAPTER 6 IS THE LIFESPAN.
CHAPTER 7, INFRASTRUCTURE AND
SURVEILLANCE.
AND WE HAVE THE CROSS-CUTTING
TOPICS OF SEX AND GENDER, AND
PROMOTING EQUITY AND REDUCING
DISPARITIES.
AND FINALLY, THERE'S A SECTION
ON IMPACTING -- THE IMPACT OF
COVID-19.
WE ALSO HAVE SOME OTHER SECTIONS
THAT HAVE BEEN DEVELOPED
INCLUDING THE MISSION AND VISION
STATEMENT WHICH HAVE BEEN
REVISED AS WELL AS A REVISED SET
OF CORE VALUES THAT I'LL SHARE
WITH YOU TODAY.
THE BUDGET RECOMMENDATION, WHICH
IS REQUIRED UNDER THE AUTISM
CARES ACT, WHICH YOU ALL
CONTRIBUTED TO A NEW REVISION OF
THAT.
AND THE STATEMENT ON DUPLICATION
OF EFFORT, WHICH IS ALSO
REQUIRED BY LAW, AND A
CONCLUSION.
SO BEFORE I MOVE ON TO ANYTHING
ELSE, ANY QUESTIONS ABOUT THOSE
SECTIONS?
OH, JALYNN?
IF YOU HAVE SOMETHING WRITTEN,
JALYNN, YOU CAN SEND TO SEND
COMMENTS HERE.
>>SORRY.
>>NO PROBLEM.
>>I HAD SOMETHING COME ON THE
RADAR, AND I'M WONDERING IF WE
NEED TO ADDRESS THIS, AND IT IS
FAIRLY MAJOR SO RATHER THAN
COMMENT LATER ON.
>>OKAY.
>>IT IS ABOUT MENTAL HEALTH AND
DISABILITIES.
AND I'M WONDERING IF WE NEED TO
LOOK AT SOMETHING IN OUR
STRATEGIC PLAN, BECAUSE I WAS
INVOLVED IN A CONFERENCE THAT IS
FINANCED BY SOME BIG DOLLARS
WITH MENTAL HEALTH, AND THERE
WERE MANY OTHER SUBGROUPS THAT
WERE BEING MENTIONED BUT
DISABILITIES, AND ESPECIALLY
AUTISM, WEREN'T EVEN ON THE
RADAR.
AND I'VE BEEN INVITED THERE, AND
SO I ENDED UP BY DEFAULT BEING A
VOICE FOR DISABILITIES IN
GENERAL, AND AUTISM
SPECIFICALLY.
THESE HAPPEN TO BE NATIONAL
ORGANIZATIONS, PEOPLE THAT ARE
WORKING ON DEFINING THINGS FOR
THE NATION, AND I'M WONDERING IF
WE NEED TO LOOK AT SOMETHING IN
THE STRAL TEE JIK PLAN THAT IS
ADDRESSING THE MENTAL HEALTH
ISSUES THAT GO ALONG WITH OUR
POPULATION AND WHAT IS OR ISN'T
BEING ADDRESSED AND WHAT MIGHT
NEED TO BE.
IT MAY NOT NEED TO BE A LARGE
COMPONENT, BUT I THINK WE NEED
TO MENTION THINGS BECAUSE IF
WE'RE EXPECTING OTHERS IN THE
MENTAL HEALTH ARENA TO BE
ADDRESSING SOME OF THESE THINGS
TO INCLUDE OUR POPULATION, THAT
WE SHOULD INCLUDE IT WITHIN OUR
STRATEGIC PLAN.
AND IT ISN'T SOMETHING THAT I
SEE LISTED, PER SE, IN WHAT
WE'VE BEEN DOING.
>>WELL, THANK YOU SO MUCH FOR
BRINGING THAT UP, AND EVEN
OFFLINE, DR. GORDON AND I HAVE
TALKED ABOUT THAT.
MENTAL HEALTH CERTAINLY IS A
THEME THAT HAS COME UP IN
SEVERAL DIFFERENT PARTS OF THE
STRATEGIC PLAN, INCLUDING
CHAPTERS 2 AND 4, AND CHAPTERS .
SO MENTAL HEALTH HAS COME UP IN
ALL THOSE AREAS AND I THINK THIS
AFTERNOON IN OUR AGING
DISCUSSION, YOU'RE GOING TO BE
HEARING ABOUT MENTAL HEALTH AS
WELL.
SO THIS IS INDEED A VERY HIGH
PRIORITY AND JOSH MAY WANT TO
SAY SOMETHING ABOUT THIS AS
DIRECTOR OF THE NATIONAL
INSTITUTE OF MENTAL HEALTH.
>>SO JALYNN, I APPRECIATE YOU
BRINGING IT UP.
I ALSO APPRECIATE YOU SPEAKING
UP AT THAT MEETING THAT YOU WERE
AT, AND WHAT I WOULD SUGGEST IS
THAT YOU LOOK AT THOSE SECTIONS
THAT -- IN THE DRAFT STRATEGIC
PLAN THAT YOU ALL HAVE AS PART
OF THE MATERIALS FOR THE MEETING
THATTING SUSAN JUST MENTIONED,
AND PERHAPS SUSAN CAN HAVE
SOMEONE FROM THE STAFF ACTUALLY
POINT JALYNN TO THE PLACES WHERE
IT'S MENTIONED.
AND THEN WITH THAT IN MIND,
DECIDE WHETHER OR NOT IT NEEDS
ADDITIONAL HIGHLIGHTING AND MAKE
SOME SUGGESTIONS AS TO WHERE
THAT MIGHT BE DONE.
>>WE ALSO MIGHT BE ABLE TO
BRING THAT OUT A LITTLE BIT IN
THE INTRODUCTION.
I WOULD SAY THAT IS SOMETHING
THAT HAS BEEN A STRONG THEME.
>>RIGHT.
AND SO I'M ACTUALLY GOING TO BE
TAKING A HARD LOOK AT THE
INTRODUCTION SO I'LL CERTAINLY
TAKE THAT POINT AS I READ THAT
INTRODUCTION AND MAKE SURE THAT
WE CALL THAT OUT.
WE'VE HEARD OVER AND OVER AGAIN
MENTAL HEALTH CHALLENGES ARE A
MAJOR COMPONENT THAT INDIVIDUALS
IN COMMUNITIES WITH AUTISM NEED
HELP WITH, WHETHER IT BE ANXIETY
OR DEPRESSION OR OTHER
MANIFESTATIONS.
SO WE'LL WANT TO MAKE SURE
THAT'S FEATURED IN A WAY THAT
MAKES SURE THAT IT IS
APPROPRIATE TO THE LEVEL OF
CONCERN.
>>I THINK WE ALSO NEED TO LOOK
AT FAMILIES IN CONJUNCTION WITH
THIS, BECAUSE MANY OF THE MENTAL
HEALTH PROBLEMS FOR THE
CAREGIVERS AND BY THE SIBLINGS.
AND IT MAKES ME WONDER, AND I
APPRECIATE SO VERY MUCH THE
PERHAPS MENTION AT THE
BEGINNING, BUT SHOULD IT BE ITS
OWN TOPIC IN OUR REPORT SO
PEOPLE WHO ARE INTERESTED IN
THIS CAN SEE THAT IT IS A
SUBJECT IN AND OF ITSELF RATHER
THAN GOING INTO A LOT OF
INDIVIDUAL PLACES TO TRY TO FIND
OUT WHERE THAT INFORMATION
RESIDES.
>>THANK YOU, WE WILL TAKE THOSE
COMMENTS INTO CONSIDERATION.
YOU WILL ALL HAVE AN OPPORTUNITY
TO COMMENT ON THE NEW DRAFT SO
PLEASE FEEL FREE TO SHARE YOUR
COMMENTS ON THAT.
JENNIFER.
>>HI, JENNIFER JOHNSON WITH THE
ADMINISTRATION FOR COMMUNITY
LIVING.
I WANT TO SHARE -- CO-OCCURRING
HEALTH DISABILITIES AND OTHER
TYPES OF DISABILITIES.
WE HAVE BEEN DOING A LINE OF
WORK IN THIS AREA RECOGNIZING
THAT THIS IS ONE OF THE MOST
UNSERVED AND UNDERSERVED
POPULATIONS OF PEOPLE, AND WE
HAVE A COUPLE PROJECTS THAT WERE
WE'RE SUPPORTING RIGHT NOW.
WE JUST LAUNCHED A NATIONAL
CENATIONALCENTER ON CO-OCCURRINL
HEALTH DISABILITIES AND OD/DD.
THAT WAS AWARDED TO THE
UNIVERSITY OF CINCINNATI
UNIVERSITY CENTER FOR EXCELLENCE
IN DEVELOPMENTAL DISABILITIES,
AND THEY'RE WORKING WITH A
NUMBER OF PARTNERS ON THAT
PROJECT, AND THEY'RE JUST
GETTING UNDERWAY.
AND WE'RE ALSO SUPPORTING FIVE
STATE TEAMS AND THE TEAMS
INCLUDE STAFF FROM THE DD
AGENCIES AND THE STATE MENTAL
HEALTH AGENCIES TO TRY TO BREAK
DOWN THE SILOS THAT EXIST IN
STATES TO BETTER SERVE THIS
POPULATION.
WE HEAR A LOT ABOUT THAT BEING A
BARRIER TO SERVICES AND
SUPPORTS, SO THOSE STATE TEAMS
ARE WORKING TO BREAK THOSE DOWN.
SO JUST WANTED TO SHARE A LITTLE
BIT ABOUT WHAT WE'RE DOING IN
THE SPACE.
>>WE APPRECIATE THAT, JENNIFER.
THANK YOU SO MUCH.
DENA, DO YOU HAVE A COMMENT?
>>YES, I'LL BE SUBMITTING
COMMENTS BUT I JUST WANTED TO
PIGGY BACK ON TO THIS AND I'M
WONDERING IF WE NEED TO CAPTURE
SOME OF THE INFORMATION THAT'S
MORE DISSEMINATED IN A MORE
CENTRAL WAY, BECAUSE I THINK WE
NEED TO TALK ABOUT RAPID AND
REPEATED MISDIAGNOSIS OF
AUTISTIC PEOPLE WITH MENTAL
HEALTH CONDITIONS, ALTHOUGH THEY
CAN CO-OCCUR, MANY, MANY PEOPLE
GET MEDICAL MALTREATMENT UNDER A
FALSE DIAGNOSIS BECAUSE OF THE
LACK OF TRAINING FOR
DIAGNOSTICIANS IN MENTAL HEALTH.
AND ALSO THE PUBLIC COMMENTS HAD
MANY, MANY STATEMENTS AROUND
MEDICATION HYPERSENSITIVITY OR
INEFFECTIVENESS IN THIS
POPULATION AND THE NEED FOR MORE
RESEARCH AROUND HOW AUTISTIC
PEOPLE PROCESS MEDICATIONS.
SO I'M IN FAVOR OF IT, AT LEAST,
YOU KNOW, GRABBING EVERYTHING
THAT'S KIND OF SCATTERED AND
COMPACTING IT INTO ONE SECTION.
>>THANK YOU FOR SHARING THAT,
AND WE LOOK FORWARD TO SEEING
COMMENTS FROM YOU AND OTHERS ON
THAT TOPIC.
>>DENA, WHILE WE HAVE YOU HERE,
WHAT'S YOUR VISION FOR WHAT THAT
TOPIC WOULD BE?
I CAN SEE ACTUALLY THAT FALLING
INTO ONE OF THE EXISTING
PRIORITY AREAS, WHETHER IT BE
CONSIDERED UNDER LIFESPAN ISSUES
OR ACTUALLY UNDER BIOLOGY, BUT
I'M WONDERING WHAT YOUR THOUGHTS
ARE ABOUT WHERE THAT MIGHT FIT
IN AS A UNIFIED SECTION, THOSE
DIFFERENT PIECES THAT YOU JUST
MENTIONED.
YOU DON'T HAVE TO HAVE AN ANSWER
NOW, BUT THINK ABOUT THAT AS
YOU -- UNLESS YOU HAVE AN ANSWER
NOW.
>>WELL, I WOULD SAY THE
RESEARCH SUPPORTS THAT THIS IS
THE RULE RATHER THAN THE
EXCEPTION FOR AUTISTIC WOMEN OR
PEOPLE WHO WERE ASSIGNED FEMALE
AT BIRTH.
I THINK THAT'S A HUGE BARRIER TO
THEM ACCESSING PROPER SERVICES.
PERSONALLY, I SPENT FIVE TOOR
TEU US YEARS ON LITHIUM FOR A
CONDITION I NEVER HAD AND I CAN
TELL YOU THAT THAT MEDICAL
MALTREATMENT IS REALLY BAD.
I ALSO THINK UNDER MENTAL
HEALTH, WE NEED TO LOOK AT
POVERTY AND THE TRAUMA OF LIVING
IN A CHRONIC STATE OF TRAUMA OF
POFPOVERTY.
WE SEE THAT IN OTHER LITERATURE
BUT NOT AS IT APPLIES TO THE
AUTISM COMMUNITY SO THAT COULD
BE A CALL TO ACTION IN TERMS OF
RESEARCHING THE TRAUMA
ASSOCIATED WITH LOW INCOME.
>>I THINK IT WILL BE
IMPORTANT -- TO ME, ON THE FACE
OF IT, DENA, YOU BROUGHT UP
SEVERAL DIFFERENT IDEAS THAT
FALL INTO DIFFERENT PARTS OF THE
PLAN AND INDEED I THINK MANY OF
THEM ARE COVERED IN THE PLAN BUT
AS YOU POINT OUT MANY OF THEM
ARE NOT SO IT WILL BE USEFUL FOR
YOU TO THINK ABOUT THAT AS YOU
LOOK OVER THE PLAN DOCUMENTS AND
AGAIN JUST LIKE I SUGGESTED WITH
DENA -- SORRY -- WITH JALYNN,
THAT YOU CONSIDER HOW BEST TO
INTEGRATE IT INTO THE STRUCTURE.
I THINK ONE CHALLENGE AT THIS
LATE DATE IS IF WE START MUCKING
WITH THE STRUCTURE TOO MUCH, WE
WILL END UP DELAYING THE REPORT
ANYMORE.
SO THINKING ABOUT HOW THESE
COMMENTS CAN FIT IN WITH THE
EXISTING STRUCTURE WILL BE
HELPFUL.
THANKS.
>>I WILL BE FOCUSED.
THANK YOU.
>>THANK YOU.
MITCHELL, DO YOU HAVE A COMMENT
ON BEHALF OF SAMHSA?
>>YES, I WAS JUST GOING TO SAY,
WE SUPPORTED AND I BELIEVE I
SHARED WITH IACC STAFF TWO
ARTICLES ON -- IN PSYCHIATRIC
SERVICES, ONE ON PERSONS WITH
INTELLECTUAL DEVELOPMENTAL
DISABILITIES IN THE HEALTH
SYSTEM, POLICIES AND SYSTEMS
CONSIDERATIONS AND ONE ON
CLINICAL CONSIDERATIONS.
SO SAMHSA HAS BEEN DOING WORK IN
TRYING TO SUPPORT WORK IN THIS
AREA.
>>THANK YOU FOR SHARING THOSE
AND WE'LL FLAG THOSE FOR STAFF
TO LOOK AT THEM AND SEE HOW THEY
FIT IN.
SO THANK YOU FOR THAT.
IVANOVA?
>>THIS IS IVANOVA SMITH.
AND I JUST WANTED TO EMPHASIZE
THE IMPORTANCE OF MAKING IT SO
THAT TREATMENTS FOR MENTAL
HEALTH DISABILITIES AND AUTISM,
THAT INTERSECT, THAT THERE'S A
TREATMENT FOR TRAUMA-INFORMED
AND THAT WOULD NOT CAUSE MORE
TRAUMA IN A PERSON AND LOOKING
AT HOW DO WE MAKE PSYCHIATRIC
TREATMENT FOR MENTAL HEALTH
DISABILITIES LESS TRAUMATIZING
AND NOT USING
INSTITUTIONALIZATION, BUT TRYING
TO FIND TREATMENTS THAT ARE
COMFORTING AND POSITIVE FOR THE
PERSON AND DOES NOT RESTRICT
AUTONOMY.
THANK YOU.
>>THANK YOU, IVANOVA.
JULIE TAYLOR.
>>HI, EVERYBODY.
JUST A QUICK COMMENT.
I AGREE THAT MENTAL HEALTH
ISSUES ARE SUPER FOREIGN IMPORR
US TO BE PULLING OUT OF THE
REPORT BUT I'M ALSO REALLY
COGNIZANT OF YOUR POSITION,
JOSH, THAT WE DON'T WANT TO MUCK
THINGS UP T TOO MUCH AT THIS
STAGE, SO MAYBE AS A COMPROMISE
TO THINK ABOUT MENTAL HEALTH AS
A CROSS-CUTTING THEME WHERE WE
COULD SORT OF HIGHLIGHT WHERE IT
FALLS IN THE DIFFERENT SECTIONS
THAT ARE ALREADY THERE AND MAYBE
AS WE'RE ALL KIND OF LOOKING
THROUGH THIS DRAFT OF THE
DOCUMENT, WE COULD SORT OF --
FOR THOSE OF US THAT THINK THAT
MIGHT BE A GOOD WAY TO GO ABOUT
IT, WE CAN SORT OF KEEP AN EYE
OUT FOR THAT AND SEE IF THAT
FEELS LIKE THAT MIGHT BE A GOOD
FIT WITHOUT SORT OF MAKING IT
ITS OWN QUESTION AT THIS POINT.
>>JULIE, THAT'S AN INTERESTING
SUX, IT CERTSUGGESTION, IT CERTD
BE HELPFUL IF WE NEEDED TO TIE
ALL THOSE BITS TOGETHER.
CERTAINLY IT IS A CROSS-CUTTING
THEME FROM A STRUCTURAL
PERSPECTIVE.
WE DO WANT TO KNOW THE GENETIC
BIOLOGICAL AND ENVIRONMENTAL
FACTORS THAT LEAD TO IT.
WE WANT TO KNOW WHAT SERVICES
ARE NECESSARY TO HELP DIMINISH
THE IMPACT OF MENTAL HEALTH
CHALLENGES IN INDIVIDUALS WITH
AUTISM, ET CETERA, SO YOU CAN
SEE HOW THAT MIGHT WORK VERY
WELL.
SO WE CAN TAKE THAT, THAT'S A
VERY GOOD SUGGESTION.
>>I AGREE, THAT IS A
POTENTIALLY GOOD SUGGESTION.
WITH OUR CROSS-CUTTING THEME,
SOMETHING I WANT TO BRING TO
YOUR ATTENTION AS A COMMITTEE IS
PART OF THE REASON WE HAVE BEEN
TRYING TO STICK WITH A STRUCTURE
IS BECAUSE WE'VE BEEN TRACKING
RESEARCH OVER TIME ACCORDING TO
THAT STRUCTURE AND WE DON'T WANT
TO CHANGE THE STRUCTURE AND THEN
LOSE OUR TRACKING THAT WE'VE
BEEN DOING FOR YEARS AND YEARS,
BUT WHEN WE ADD CROSS-CUTTING
THEMES, THAT GIVES US ANOTHER
TAG TO TRACK WITH, SO FOR
EXAMPLE, IF YOU WANTED US TO
PULL ALL THE RESEARCH
INFORMATION ON MENTAL HEALTH
INTO AN ANALYSIS, WE CAN DO IT
WITHOUT THE CROSS-CUTTING THEME
BUT IF WE OFFICIALLY DO IT AS A
CROSS-CUTTING THEME THAN WE
WOULD AUTOMATICALLY BE TAGGING
ALL THE RESEARCH THAT IS MENTAL
HEALTH IN ONE PLACE.
SO THAT IS A GOOD SUGGESTION AND
WE CAN CERTAINLY CONSIDER IF
IT'S SOMETHING THE COMMITTEE
WOULD LIKE TO DO.
WAS THERE ANOTHER QUESTION?
I THINK I SAW A HAND AND THEN IT
DISAPPEARED.
>>THIS IS SAM.
I ACTUALLY PUT IN THE CHAT BUT I
HAD RAISED MY HAND TO SAY
EXACTLY THE SAME THING THAT
JENNIFER DID, SO I THINK IT
MIGHT MAKE SENSE TO PUT AS A
CROSS-CUTTING THEME BECAUSE IT
DOES TOUCH ON BIOLOGY,
TREATMENT, SCREENINGS, LIFESPAN,
SERVICES AND SUPPORTS TO SO MANY
DIFFERENT QUESTIONS, BUT YOU
KNOW, PUTTING IT AS A THEME
MAKES A LOT OF SENSE.
>>THANK YOU.
SO I'M HEARING QUITE A BIT OF
SUPPORT FOR THAT.
IS THERE ANYONE ON THE COMMITTEE
WHO'S NOT IN FAVOR OF MAKING
THAT A CROSS-CUTTING THEME?
BECAUSE IT'S SOMETHING WE COULD
WORK ON IN THE NEXT VERSION.
AND IS THAT HELEN SAYING NO OR
HELEN HAVING A QUESTION?
>>HELEN HAVING A QUESTION.
>>OH, OKAY.
YES --
>>IT'S VERY QUICK.
>>GO AHEAD, YES.
>>I THINK HAVING IT AS A
CROSS-CUTTING THEME MAKES A
GREAT DEAL OF SENSE, BUT THEN AT
THE SAME TIME, I WOULD SAY
TALKING ABOUT THE VARIATION IN
INTELLECTUAL FUNCTIONING IS
ANOTHER CRITICAL CROSS-CUTTING
THEME THAT'S REALLY ON A PATH
BECAUSE IT ALSO COVERS THE FULL
RANGE OF TOPICS.
>>THANK YOU FOR THAT
SUGGESTION.
SO IT'S CERTAINLY POSSIBLE, I
GUESS WE DON'T WANT TO GET TO
THE POINT WHERE WE HAVE SO MANY
DIFFERENT ONES THAT THINGS GET
LOST.
BUT MAYBE WE WILL HAVE A
DISCUSSION ABOUT THAT AND TRY TO
FIGURE OUT WHAT WE CAN DO.
I AGREE, THOUGH, THAT THAT IS
ANOTHER THEME THAT DOES TRICKLE
THROUGH MANY PART OF THE
STRATEGIC PLAN THAT WE HAVE
TRIED TO ADDRESS, BUT WELCOME
YOUR COMMENTS WHEN YOU READ THE
DRAFT.
JALYNN?
>>THE CROSS-CUTTING THEME SEEMS
LIKE A VERY INTERESTING WAY OF
APPROACHING IT.
OF I WOULD LIKE TO UNDERSTAND
WHAT THAT MIGHT LOOK LIKE IF
SOMEONE HAPPENED TO BE LOOKING
AT THIS PLAN TO SEE WHAT IS
HAPPENING, WHAT THE ATTITUDES
ARE.
IS IT SOMETHING THAT IS
HIGHLIGHTED IN A PARTICULAR
COLOR AS ONE GOES THROUGH ALL OF
THESE THINGS, SO ANY OF THE
MENTIONS CAN BE CITED OR HOW DO
WE GET INTO IT?
BECAUSE SOMETIMES LOOKING AT
THESE REPORTS, THEY'RE FAIRLY
WEIGHTY.
I'VE GOT SOME OF THE CHAPTERS IN
FRONT OF ME RIGHT NOW, AND GOING
THROUGH ALL OF THOSE THINGS TO
FIND OUT WHERE THERE ARE MENTAL
HEALTH MENTIONS OR SOME OF THE
OTHER TYPES OF THINGS COULD BE
MORE LABOR THAN PEOPLE HAVE TIME
TO DEVOTE AND TO TRY TO GET INTO
INFORMATION.
>>RIGHT, THAT IS THE CHALLENGE.
WE'RE TRYING TO BE
COMPREHENSIVE.
WE'VE GOT A REPORT THAT'S -- I
KNOW IT'S OVER 100 PAGES SO
THAT'S WHY I KNEW NOT EVERYONE
WAS GOING TO HAVE TIME TO READ
IT IN ITS ENTIRETY BEFORE THIS
MEETING.
YOU WILL SEE THAT WITH --
>>WHY DON'T YOU PUT UP THAT
TABLE OF CONTENTS, IF YOU WILL
AGAIN.
YOU HAD IT ALREADY.
THAT WILL HELP, I THINK, JALYNN
UNDERSTAND HOW IT'S CALLED OUT
TO A CERTAIN DEGREE.
>>SO WE ALREADY HAVE THE
CROSS-CUTTING THEME, A NEW ONE
THAT'S ON PROMOTING EQUITY AND
REDUCING DISPARITIES.
WE ALREADY HAD ONE ON SEX AND
GENDER.
IF WE WERE TO CREATE ONE ON
MENTAL HEALTH, WE COULD, BUT AS
YOU SEE, WE ALREADY HAVE A LOT
OF CHAPTERS, SO I WOULD SAY WE
MIGHT NOT WANT TO MAKE A WHOLE
LOT OF NEW CHAPTERS AS IT WILL
GET HARDER AND HARDER TO READ AS
YOU SAID.
HOWEVER, IF THERE'S SOMETHING
REALLY IMPORTANT THAT I THINK
ONE OF THE DECIDING FACTORS IS,
IS THIS SOMETHING THAT WE WANT
TO TRACK SEPARATELY FOR SOME
REASON.
WITH MENTAL HEALTH, I COULD SEE
US WANTING TO TRACK THAT
INFORMATION AND HAVE IT IN ONE
PLACE.
WITH INTELLECTUAL DISABILITY, IT
MIGHT BE A LITTLE SUBTLE.
IT'S PROBABLY A PART OF, SAY, IN
RESEARCH, A LOT OF RESEARCH, SO
I DON'T KNOW IF IT WOULD REALLY
MAKE A HUGE DISTINCTION IF WE
TRIED TO PULL THAT SEPARATELY,
WE MIGHT NOT BE ABLE TO SEPARATE
IT OUT.
>>I THINK ALSO ONE PLACE TO
LOOK FOR THE CONSIDERATION OF
THE SPECTRUM OF INTELLECTUAL
FUNCTIONING WILL BE IN THE
INTRODUCTION WHERE WE TALK ABOUT
AUTISM AS A SPECTRUM, AND SO
THAT MIGHT BE A PLACE THAT WE
COULD BEEF UP THE NOTION THAT WE
NEED TO BE THINKING ABOUT
DIFFERENT LEVELS IN INTELLECTUAL
FUNCTION AS WE THINK ABOUT THESE
DIFFERENT CHAPTERS.
>>THANK YOU.
STEVEN, DID YOU HAVE A COMMENT
THAT YOU WANTED TO SHARE ON
BEHALF OF SOMEONE?
>>YES, I HAD ONE COMMENT AND
ONE QUESTION.
JENNY MAI PHAN WANTED TO EXPRESS
INTEREST IN INCLUDING
PSYCHOPHARMACOLOGY IN THE MENTAL
HEALTH CROSS-CUTTING THEME.
DR. SUSAN RIVERA WANTED TO KNOW
EXACTLY WHAT THE CROSS-CUTTING
THEME WOULD BE.
>>SO WITH CROSS-CUTTING THEMES
LIKE WE'VE SAID ON THIS SLIDE
THAT I HAVE SHOWN RIGHT HERE, WE
DO HAVE SEX AND GENDER AND
PROMOTING EQUITY AND REDUCING
DISPARITIES.
PART OF THE GOAL OF THAT IS
POSSIBLY PULLING TOGETHER
INFORMATION THAT MIGHT BE
SCATTERED ACROSS THE CHAPTERS
INTO ONE PLACE, BUT IT ALSO --
WE IN THE OFFICE ARE USING THOSE
AS GUIDES FOR US TO BE ABLE TO
TAG RESEARCH PROJECTS AND BE
ABLE TO PULL THEM INTO A
SPECIFIC ANALYSIS.
WITH PSYCHOPHARMACOLOGY, I DON'T
KNOW THAT THAT IS SOMETHING THAT
WOULD BE CROSS-CUTTING ACROSS
ALL THE CHAPTERS, SO WE DO
DISCUSS THAT IN THE PLAN.
I WOULD SUGGEST POTENTIALLY
LOOKING AT QUESTION 4 AND SEEING
IF WE'VE TREATED IT ADEQUATELY
THERE.
AND THEN LINDSEY, DO YOU HAVE A
QUESTION?
>>YES, I DO.
I WAS TRYING TO THINK, SINCE
WE'RE DISCUSSING MENTAL HEALTH
AND FIGURING OUT HOW TO PREVENT
PUTTING IN TOO MANY
CROSS-CUTTING TOPICS.
I'M TRYING TO THINK IF
PUTTING -- IF IT'S A
CROSS-CUTTING TOPIC OR PUTTING A
SUBSECTION SOMEWHERE ABOUT
HEALTH AND WELLNESS AND PUTTING
MENTAL HEALTH UNDER THAT
UMBRELLA OF HEALTH AND WELLNESS,
OR IF THAT MIGHT BE TOO BROAD.
BUT I WANTED TO JUST PUT THAT
THOUGHT OUT THERE.
>>THANK YOU.
HEALTH AND WELLNESS IS MENTIONED
THROUGHOUT THE PLAN.
AGAIN THAT'S WHERE WHERE IT
WOULD BE PRETTY HARD TO SEPARATE
THAT FROM PRETTY MUCH ANY OF THE
RESEARCH THAT'S FUNDED.
I MEAN, ALL OF IT IS PRETTY MUCH
SOMETHING RELATED TO HEALTH AND
WELLNESS OR UNDERSTANDING WHY
PEOPLE ARE NOT HEALTHY AND WELL.
BUT IT IS CERTAINLY MENTIONED,
SO JUST LOOK AT WHAT WE HAVE
WHEN YOU HAVE A CHANCE TO REVIEW
AND LET US KNOW IF THERE'S
SOMETHING DIFFERENT THAT YOU SEE
A PLACE THAT YOU THINK IT NEEDS
OTHER MENTIONS.
DENA, DO YOU HAVE A COMMENT?
>>I HAVE A COMMENT FOR HARI.
HE'S HAVING TROUBLE GETTING IN
TO LEAVE COMMENTS.
SO I'M JUST GOING TO READ THIS.
WE NEED BETTER DEVELOPMENT OF
MEDS TO HELP WITH MENTAL HEALTH
NEEDS, SIBs, AND OBSESSIVE
COMPULSIVE BEHAVIORS AND SO ON.
INSTEAD, ALL WE HAVE IS BIG
PHARMA RECYCLING AND REBRANDING
DRUGS MADE IN THE 1950s.
MINOR CHANGES IN CHEMICAL
STRUCTURE ALLOW FOR RE-PATENTING
AND MAINTAINING EXORBITANTLY
HIGH PRICES AND PROFITS.
I HEARD DR. ANTONIO HARDIN OF
STANFORD MENTION THAT THESE
DRUGS DON'T WORK THE WAY THEY
SAY THEY SHOULD IN AUTISTICS AS
IN THE GENERAL POPULATION.
SO WHY ARE WE STILL
OVERMEDICATED WITH THESE SAME
DRUGS?
HAVE WE THOUGHT ABOUT WHETHER
SIB COULD BE PSYCHOLOGICAL
STRESS AND INDICATIVE OF SUICIDE
IDEATION?
MAYBE YOU DON'T HAVE THE
PHYSICAL ABILITY TO CARRY OUT
SUICIDE, WHICH REQUIRES LOTS OF
EXECUTIVE FUNCTION AND PLANNING
SO YOU DO WHAT IS AVAILABLE TO
YOU.
>>THANK YOU.
AND SIB IS ON THE LIST OF ONE OF
THE TOPICS TO JUST RE-REVIEW FOR
OUR TEAM AS WE GO THROUGH THE
PLAN.
WE HAVE A LIST AND WE'RE TAKING
NOTES THROUGH THIS AND WE WILL
BE GOING BACK AND LOOKING
THROUGH THE CLAP TERSE TO TRY TO
MAKE SURE WE'VE DONE OUR BEST TO
INCORPORATE THINGS AND OF COURSE
WE'LL BE TAKING YOUR FEEDBACK
FOR ADDITIONAL COMMENTS.
SO IF IT'S OKAY WITH THE TIME WE
HAVE LEFT, I'D LIKE TO JUST
SHARE WITH YOU THE MISSION AND
VISION STATEMENT AND SOME OF
THESE OTHER THINGS THAT HAVE
BEEN REVISED.
SO THE MISSION AND VISION
STATEMENT THAT WE HAVE AFTER
REVISION IS THE PURPOSE OF THE
IACC STRATEGIC PLAN FOR AUTISM
RESEARCH SERVICES AND POLICY, IS
TO FOCUS, COORDINATE AND
ACCELERATE INNOVATIVE RESEARCH
AND FOSTER THE DEVELOPMENT OF
HIGH QUALITY SERVICES AND
SUPPORTS.
THE PLAN WILL EMPHASIZE THE
CRITICAL IMPORTANCE OF
PARTNERSHIPS AMONG GOVERNMENT
AND COMMUNITY PARTNERS TO
ADDRESS THE URGENT NEEDS -- OR
URGENT QUESTIONS AND NEEDS OF
ALL AUTISTIC PEOPLE ACROSS THE
SPECTRUM AND ACROSS THE
LIFESPAN.
ULTIMATELY, THE PLAN WILL
CATALYZE FEDERAL AND PRIVATE
ACTIVITIES THAT WILL IMPROVE
HEALTH, WELL-BEING, ACCEPTANCE,
INCLUSION, AND INCLUSION FOR ALL
PEOPLE ON THE AUTISM SPECTRUM
AND THEIR FAMILIES.
WE'VE ALSO DONE SOME REVISION TO
THE CORE VALUE, SO WE HAD THE
SAME SET OF CORE VALUES FROM
2009 AND AFTER LOOKING AT IT
WITH THE INPUT THAT YOU
PROVIDED, MADE SOME EDITS AND
UPDATES TO THIS TO FOCUS ON SOME
OF THE THINGS THAT YOU ALL HAVE
SHARED WITH US IN THE MEETINGS,
AND WE NOW HAVE ADDITIONAL CORE
VALUES, SO WE HAVE ONE ON
IMPACT, ONE ON COMMUNITY FOCUS,
ONE ON EQUITY AND INCLUSION, ONE
ON EXCELLENCE, ONE ON
RESPONSIVENESS, AND ONE ON THE
SPIRIT OF COLLABORATION THAT WE
HAVE UPDATED AND IN THE INTEREST
OF TIME, I'M NOT GOING TO READ
THEM ALL TO YOU, BUT THEY ARE
HERE ON THE SLIDES AND I DON'T
KNOW IF THEY'RE ON THE WEB RIGHT
NOW, BUT IF THEY ARE NOT, WE CAN
MAKE SURE WE PROVIDE THEM AND
THEY WILL BE A PART OF THE NEXT
DRAFT.
BUT WE REALLY APPRECIATE THE
INPUT THAT WE HAD AND HOPE THAT
THIS BETTER REFLECTS OUR CURRENT
THINKING.
AND IT WAS GOOD FOR US TO HAVE
AN UPDATE ON THESE.
I ALSO WANTED TO REPORT OUT TO
YOU ON THE BUDGET
RECOMMENDATIONS.
SO IN THE SURVEY THAT YOU
RECEIVED, YOU SHARED WITH US
WHAT YOUR PRIORITIES WERE FOR
THE BUDGET RECOMMENDATION WE HAD
YOU VOTE.
AND WE TOOK THE TOP THREE ISSUES
THAT YOU VOTED ON TO BE ITEMS TO
HIGHLIGHT.
IT DOESN'T MEAN THAT THE BUDGET
IS NOT GOING TO FOCUS ON ALL THE
OTHER THINGS THAT ARE IN THE
STRATEGIC PLAN.
BUT THE RESULT OF YOUR VOTE WAS
THAT THE COMMITTEE DECIDED THAT
THEY WOULD LIKE TO FOCUS ON
LIFESPAN ISSUES, EVIDENCE-BASED
INTERVENTIONS AND SERVICES, AND
RESEARCH ON DISPARITIES AND
DEVELOPMENT OF CULTURALLY
COMPETENT TOOLS AND SERVICES.
YOU ALSO DID DECIDE AT A
PREVIOUS MEETING TO EXTEND THIS
GOAL TO REACH FUNDING LEVEL OF
685 MILLION BY 2025.
THE PREVIOUS GOAL WAS TO REACH
THAT POINT THAT BY 2020, WE
DIDN'T MAKE IT QUITE THERE, SO
WE HAVE EXTENDED THAT TO TWEP 25
BASED ON YOUR INPUT ON THAT.
SO THAT IS THE BUDGET
RECOMMENDATION AND IT HAS A
NARRATIVE AND TEXT THAT YOU CAN
READ IN WHAT HAS BEEN PROVIDED.
WE ALSO INCLUDED A STATEMENT ON
DUPLICATION OF EFFORT, WHICH IS
SOMETHING CONGRESS REQUIRES US
TO DO TO ENSURE THAT THE FEDERAL
AGENCIES AND PEOPLE WORKING ON
AUTISM ARE NOT DUPLICATING
EFFORT AND PARTICULARLY FOR
FEDERAL AGENCIES NOT WASTING
TAXPAYER FUNDS ON THINGS THAT
ARE DUPLICATIVE.
THIS NARRATIVE THAT WE PROVIDED
EXPLAINS THAT THE GOAL OF THE
COMMITTEE IS TO RECOMMEND
RESEARCH THAT IS NOT DUPLICATIVE
AND ALSO THAT WE SUPPORT THE
IDEA OF VERIFYING RESEARCH
RESULTS HAVING MULTIPLE STUDIES
ON AN ISSUE FROM DIFFERENT
ANGLES AND THAT WE DON'T
CONSIDER THIS DUPLICATIVE.
AND THAT'S JUST A LITTLE BIT
FURTHER ON THAT.
SO THAT'S WHAT I WANTED TO SHARE
WITH YOU AND WE HAVE A COUPLE OF
ADDITIONAL MINUTES TO SHARE ANY
OTHER COMMENTS THAT WE WANT TO
SHARE HERE, AND I WILL GIVE YOU
SOME ACTION ITEMS.
SO DO WE HAVE ANY ADDITIONAL
COMMENTS?
WHY DON'T I JUST RUN THROUGH
WHAT THE NEXT ITEMS WILL BE.
SO WE'RE GOING TO BE PROVIDING
YOU WITH A SURVEY THAT YOU WILL
GET, AND YOU HAVE THESE DRAFT
CHAPTERS, WE WILL MAKE SURE
EVERYTHING IS THERE.
YOU WILL HAVE A CERTAIN AMOUNT
OF TIME TO PROVIDE US WITH YOUR
FEEDBACK AND WE ARE NOT
PROVIDING WORD DOCUMENTS FOR
LINE EDITS FROM 40 PEOPLE
BECAUSE THAT WOULD NOT BE
MANAGEABLE.
WE'RE JUST GOING TO GIVE YOU A
SURVEY DOCUMENT WHERE YOU CAN
JUST WRITE YOUR COMMENTS IN AND
THEY WILL BE BINNED FOR US AND
WE WILL INCORPORATE THOSE INTO
THE NEW DRAFT, AND BEFORE THE
NEXT MEETING, THERE WILL BE A
NEW DRAFT FOR YOU TO REVIEW AND
WE HOPE IT'S READY TO APPROVE IN
JANUARY.
SO THE NEXT MEETING IS GOING TO
BE ON JANUARY 18TH, AND WE HAVE
NOT YET DECIDED IF IT'S GOING TO
BE VIRTUAL OR HYBRID.
WE WILL KEEP OUR EYE ON WHAT IS
GOING ON IN OUR ENVIRONMENT AT
THE TIME.
IF IT IS A HYBRID MEETING, IF WE
STILL HAVE RESTRICTIONS ON
SPACE, IT MAY NOT BE OPEN FOR
THE PUBLIC TO I A TEND IN
PERSON, IT MAY ONLY BE OPEN FOR
MEMBERS TO ATTEND IN PERSON, BUT
WE WILL KEEP YOU UPDATED BASED
ON THE LATEST ON THAT, AND THE
WEBSITE WILL HAVE MEETING
UPDATES.
AND SO IF THERE ARE SOME OTHER
QUESTION, I SEE A COUPLE OF
HANDS RAISED, I JUST WANTED TO
MAKE SURE I GOT THROUGH THE REST
OF THESE SLIDES.
SO JALYNN, DO YOU HAVE A
COMMENT?
>>YES, I HAVE A QUESTION.
WITH THE BUDGET, ONE PARTICULAR
POINT A FEW YEARS AGO, THERE WAS
A PROPORTION THAT HAD BEEN
DEDICATED TOWARD ADULT AUTISM,
AND THEN I GUESS THE REST OF THE
BUCKET, POOR WAY OF STATING IT.
WITH THIS BUDGET, WHAT PORTION
OF THAT IS DIRECTED TOWARD
ADULTS, OR IS THAT EVEN BEING
SEPARATED OUT ANY LONGER?
>>SO THAT'S THE LIFESPAN ISSUES
PART OF IT, BUT -- SO TO CLARIFY
WHAT THE BUDGET RECOMMENDATION
IS, IT'S A RECOMMENDATION FROM
THE COMMITTEE ABOUT WHERE
AGENCIES MIGHT WANT TO FOCUS IF
THEY WANTED TO FOCUS ON THINGS
THAT ARE IMPORTANT TO THE
COMMITTEE.
ALTHOUGH THE ENTIRE STRATEGIC
PLAN AND ALL OF ITS
RECOMMENDATIONS ARE ADVISORY TO
THE SECRETARY OF HEALTH AND
HUMAN SERVICES AND TO FEDERAL
AGENCIES.
SO THAT IS COVERED HERE.
BUT THAT DOES NOT MEAN THERE IS
A SET BUDGET LIKE SOME FEDERAL
BUDGET THAT'S DIVIDED UP TO
PIECES.
EVERY AGENCY GETS ITS OWN BUDGET
AND MAKES ITS OWN FUNDING.
>>I THINK, SUSAN, THE QUESTION
JALYNN WAS FRYIN WAS TRYING TO S
THERE A RECOMMENDATION FOR A
CERTAIN SUBSET OF THE 658 --
$685 MILLION BY 2025 THAT WE
RECOMMEND SPENDING ON RESEARCH
AND SERVICES -- I THINK THIS IS
RESEARCH, RESEARCH IN ADULTS
WITH AUTISM?
>>THE BUDGET RECOMMENDATION
PREVIOUSLY HAS NOT RECOMMENDED A
SPECIFIC DOLLAR AMOUNT.
I THINK THAT WOULD BE A LITTLE
BIT CHALLENGING, GIVEN HOW
APPROPRIATIONS ARE MADE TO
FEDERAL AGENCIES TO SPECIFY AND
THEN TRY TO ADD THAT UP, BUT WE
ARE TRACKING ON THE $685 MILLION
TOTAL.
THAT INCLUDES NON-FEDERAL
ORGANIZATIONS AS WELL.
>>A FEW YEARS AGO, IT WAS LIKE
2% OF THE AUTISM FUNDING
HAPPENED TO GO TO ADULTS WITH
AUTISM, THEN IT INCREASED TO 4%
AND THAT'S KIND OF WHAT I'M
ASKING ABOUT.
WHAT PROPORTION OF THAT, OR
MAYBE THAT ISN'T EVEN THE WAY
THAT THINGS ARE LOOKED AT NOW,
BUT WE GAVE TESTIMONY FOR THAT A
FEW YEARS AGO.
>>SO JALYNN, THAT'S A DATA
QUESTION AS OPPOSED TO A
RECOMMENDATION, RIGHT?
SO YES, WE CAN TRACK -- IT CAN
BE CHALLENGING BUT IACC STAFF DO
TRACK SOME OF THE DETAILS ABOUT
HOW THIS MONEY IS SPENT IN
DIFFERENT AREAS.
BUT WHAT WE'RE TALKING ABOUT
HERE IS A RECOMMENDATION FOR
FUTURE EXPENDITURES ON AUTISM
RESEARCH, WHICH IS WHAT CONGRESS
HAS ASKED US FOR.
WE HAVE NOT IN THE PAST TRIED TO
SPECIFY HOW MUCH GOES FOR WHICH
KINDS OF TOPICS.
>>SO WE WILL SHARE WITH YOU
WHEN WE DO THE PORTFOLIO
ANALYSIS UPDATE IN JANUARY WHAT
THE UPDATE IS ON LIFESPAN ISSUES
AND I CAN SAY AS A PREVIEW WE'VE
NOTED AN INCREASE IN OUR
ANALYSIS, BUT WE WILL SHARE THAT
WITH YOU IN DETAIL IN JANUARY.
ANY OTHER QUESTIONS BEFORE WE
BREAK FOR LUNCH?
>>I JUST WANT TO PUT A PITCH IN
FOR AN IN-PERSON MEETING.
I THINK OUR BODY IS REALLY
STRUGGLING TO COALESCE THROUGH
THE MEETING THROUGH ZOOM.
I THINK WE'VE DONE THE VERY BEST
WE COULD WITH OUR CIRCUMSTANCES,
BUT I JUST -- I JUST WANT TO PUT
A PITCH IN FOR THAT.
I THINK WE REALLY NEED THAT OFF
THE RECORD BONDING TIME TO BRING
THE GROUP TOGETHER.
>>THANK YOU, DENA.
WE ARE IN FULL PLANNING MODE TO
BE ABLE TO HAVE AN IN-PERSON
COMPONENT FOR THE MEETING, AND
IT'S CERTAINLY MY INTENTION TO
HOLD THE MEETING IN PERSON, BUT
NO ONE CAN KNOW WHAT WILL BE
HAPPENING WITH REGARD TO THE
PANDEMIC.
>>UNDERSTANDABLE, YEAH.
THANK YOU.
>>AND FOR THOSE OF YOU WHO
MIGHT FEEL OTHERWISE FROM DENA
AND BE CONCERNED ABOUT THE
PROSPECTS OF TRAVELING, ET
CETERA, WE WILL HAVE A HYBRID
OPTION AS WE'VE HAD IN THE PAST.
IT WILL BE MUCH BETTER THAN IT
USED TO BE BECAUSE OF OUR
EXPERIENCE HERE.
BUT I APPRECIATE THE COMMENT,
DENA.
AND ANY OTHER OPINIONS ARE
WELCOME TO EXPRESS TO MYSELF OR
SUSAN.
SO WITH THAT, THANK YOU VERY,
VERY MUCH FOR YOUR HARD WORK,
AND ATTENTION TO THESE BUSINESS
MATTERS AND THE REST.
WE WILL BE RETURNING SHARPLY AT
1:30.
WE'RE A FEW MINUTES LATE GOING
INTO OUR BREAK, BUT WE'RE GOING
TO START UP THE AFTERNOON ON
TIME, AND AS YOU'LL KNOW FROM
YOUR AGENDA, THE FIRST ITEM ON
THE AGENDA BACK IS THE PUBLIC
COMMENT SESSION.
WE'LL SEE YOU AT 1:30.
>>THANK YOU.
>>AND AGAIN, SORRY, IF YOU CAN,
PLEASE LEAVE THE ZOOM OPEN.
IT'S JUST EASIER THAN HAVING TO
WORRY ABOUT WHETHER OR NOT
YOU'RE GOING TO HAVE TECHNICAL
ISSUES COMING BACK IN, BUT STOP
YOUR VIDEOS AND MUTE YOUR
MICROPHONES.
>>SEE YOU AT 1:30.
>>WELCOME BACK, EVERYONE.
THANK YOU VERY MUCH.
HOPE YOU HAD A GOOD, USEFUL
BREAK AND ARE READY FOR THE BUSY
AFTERNOON WE HAVE PLANNED FOR US
ALL.
THE NEXT SEGMENT OF OUR MEETING
IS THE PUBLIC COMMENT SESSION.
AND TO LEAD THAT SESSION, I'M
GOING TO TURN IT BACK OVER TO
DR. DANIELS.
SUSAN.
>>THANK YOU.
SO WE ARE GOING TO BE TALKING
ABOUT PUBLIC COMMENTS AND
HEARING PUBLIC COMMENTS IN THIS
NEXT SESSION.
SO FIRST WE'LL BE HEARING FROM
OUR ORAL PUBLIC COMMENTERS.
I'D LIKE TO REMIND EVERYONE ON
THE COMMITTEE THAT WE ARE HERE
TO LISTEN TO PEOPLE THAT ARE
GOING TO BE SHARING THINGS FROM
DIFFERENT PERSPECTIVES AND THAT
WE WANT TO JUST BE THOUGHTFUL IN
OUR LISTENING AND CONSIDERATION
OF POINTS THAT ARE BEING MADE BY
OUR PUBLIC COMMENTERS.
AND WE APPRECIATE ALL THE PUBLIC
COMMENTERS ALSO HAVING THE
COURAGE TO COME AND SHARE YOUR
POINTS OF VIEW WITH THIS
COMMITTEE.
SO WE HAVE SHANNON DES ROCHES
ROSA, WHO WILL BE OUR FIRST
PRESENTER, AND THEN THAT WILL
BE -- SHE WILL BE FOLLOWED BY
JUDITH URSITTI, AMY LUTZ, AMY
MONTIMURO, RIEKO SHEPHERD, AND
ELLIOT GAVIN KEENAN IN THAT
ORDER.
SO I WILL HAND IT OVER TO
SHANNON DES ROCHES ROSA TO START
US OFF WITH THE PUBLIC COMMENT.
AND REMEMBER, EVERYONE, WE'RE
STICKING TO ABOUT 3 MINUTES PER
COMMENT, AND WE WON'T BE
RESPONDING TO THEM UNTIL AFTER
WE'VE GONE THROUGH ALL OF THE
ORAL AND WRITTEN COMMENTS.
SO TAKE IT AWAY, SHANNON.
>>THANK YOU SO MUCH,
DR. DANIELS.
I'M SPEAKING TO YOU AS THE
PARENT OF AN AUTISTIC ADULT WHO
REQUIRES FULL TIME SUPPORT AND
SUPERVISION AND ALSO A SENIOR
EDITOR OF THINKING PERSON'S
GUIDE TO AUTISM, AN AUTISM
RESEARCH AND ADVOCACY COMMUNITY
WHERE I CONSTANTLY HEAR FROM
PARENTS, AUTISTIC PEOPLE,
PROFESSIONALS AND RESEARCHERS
ABOUT THEIR PRIORITIES FOR
AUTISTIC PEOPLE TO LIVE SAFE,
HEALTHY, FULFILLED LIVES.
COMMUNITY PRIORITIES INCLUDE:
RESEARCH ON HOW AUTISTIC PEOPLE
MAY PROCESS MEDICATIONS
DIFFERENTLY, THE MEDICAL
COMMUNITY SEEMS LARGELY UNAWARE
THAT AUTISTIC PEOPLE OFTEN HAVE
PARADOXICAL OR ATYPICAL
REACTIONS TO COMMONLY PRESCRIBED
MEDICATIONS SUCH AS NOT REACTING
TO OR BEING OVERSTIMULATED BY
SEDATING DRUGS.
IN WORST-CASE SCENARIOS, THIS
LACK OF KNOWLEDGE HAS BEEN
FATAL.
WE ALSO NEED RESEARCH ON WHY
SEDATION FOR MEDICAL CARE IS AN
ACCESS NEED.
BOTH SPEAKING AND UNSPEAKING
AUTISTICS OFTEN REQUIRE PARTIAL
OR FULL SEDATION TO BE ABLE TO
TOLERATE MEDICAL PROCEDURES SUCH
AS DENTAL EXAMS AND MRIs.
YET THE SEDATION IS RARELY
COVERED BY INSURANCE.
SUCH RESEARCH COULD IMPROVE
HEALTHCARE ACCESS AS WELL AS
OUTCOMES.
WE ALSO NEED RESEARCH ON
COMPETING SENSORY ACCESS NEEDS.
AUTISTIC SENSORY SYSTEMS DON'T
ONLY DIFFER FROM NON-AUTISTIC
PEOPLE, THEY OFTEN DIFFER FROM
EACH OTHER.
WE NEED RESEARCH ILLUSTRATING
WHY IT IS INAPPROPRIATE TO PUT
AUTISTIC PEOPLE TOGETHER IN
CLASSROOMS OR OTHER SETTINGS
WITHOUT FULLY EVALUATING AND
ACCOMMODATING THEIR
INDIVIDUALIZED SENSORY PROFILES.
WE ALSO SORLIE N SORELY NEED REN
IMPROVING ACCESS TO DIAGNOSIS,
WHILE I KNOW THIS IS IMPROVING,
TOO MANY AUTISTIC PEOPLE ARE
BEING MISDIAGNOSED, CATEGORIZED
AS HAVING BEHAVIORAL DISORDERS,
RESORTING TO SELF-DIAGNOSIS OR
BEING OVERLOOKED ALL TOGETHER.
THEY ARE SUFFERING AS A RESULT,
LEADING TO AVOIDABLE ANXIETY,
DEPRESSION, ISOLATION, POVERTY,
AND SUICIDALITY.
FINALLY, WE NEED RESEARCH ON
TRANSITIONING OUT OF THE SCHOOL
SYSTEM AND INTO ADULTHOOD,
ESPECIALLY FOR OUR AUTISTIC
PEOPLE WITH THE HIGHEST SUPPORT
NEEDS.
THE CLIFF IS A REAL THING FOR
STUDENTS LIKE MY SON, WHO IS
CURRENTLY FACING A COMPLETE LACK
OF APPROPRIATE LOCAL ADULT
PROGRAMS.
AT THE SAME TIME, THERE IS ALSO
A DIRECT SUPPORT WORKER
SHORTAGE, SO MY SON DOES NOT
HAVE THE STAFFING HE NEEDS AND
DESERVES AND HAS BEEN ALLOCATED.
IF FAMILIES LIKE MINE WHICH HAVE
THE LANGUAGE, CLASS AND
COGNITIVE ADVANTAGES THAT MAKE
IT EASIER TO NAVIGATE
IMPENETRABLE PUBLIC DISABILITY
SUPPORT SYSTEMS STILL CAN'T FIND
ANY SUPPORT, THEN FAMILIES WHO
DON'T HAVE OUR ADVANTAGES ARE
CERTAINLY WORSE OFF AND NEED OUR
SUPPORT.
A FINAL NOTE, I AM GLADDENED
ABOUT THE IACC'S CURRENT
MEMBERSHIP INCLUSIVE OF THOSE
WHO HAVE INTELLECTUAL
DISABILITY, WHO ARE PARENTS, WHO
HAVE FAMILY MEMBERS WITH
INTENSIVE SUPPORT NEEDS SIMILAR
TO MY OWN SON, AND/OR WHO ARE
PEOPLE OF COLOR.
IT IS HARD TO HAVE FAITH IN AN
ADVISORY BODY THAT DOES NOT
RESEMBLE THE POPULATION FOR WHOM
IT IS RESPONSIBLE.
ALSO, AS SOMEONE WHOSE AUTISTIC
SON HAS LIMIT LANGUAGE IT IS
IMPORTANT FOR ME TO KNOW THAT
AUTISTIC IACC MEMBERS, PEOPLE
WHO UNDERSTAND MY SON'S LIFE AND
EXPERIENCE IN WAYS THAT I AS A
NON-AUTISTIC PERSON NEVER CAN,
ARE LOOKING OUT FOR HIS
INTERESTS AS A HUMAN BEING.
THANK YOU.
>>THANK YOU.
SO WE WILL MOVE ON TO THE NEXT
COMMENT.
I APPRECIATE YOUR COMMENTS.
THANK YOU FOR SHARING THAT WITH
US.
NEXT WE HAVE JUDITH URSITTI.
>>HELLO THERE.
I HAVE A BIT OF A COLD BUT I
PROMISE I'M COVID-NEGATIVE.
AND IF I START COUGHING, JUST
PLEASE JUMP IN AND TAKE OVER.
MY NAME IS JUDITH UR SI TI.
I'M VICE PRESIDENT OF GOVERNMENT
AFFAIRS FOR THE COUNCIL OF
AUTISM SERVICE PROVIDERS.
IF YOU HAVEN'T HEARD OF CASP, I
HOPE YOU WILL SOON.
WE ARE A NON-PROFIT TRADE
ASSOCIATION MADE UP OF HUNDREDS
OF AUTISM SERVICE PROVIDERS OF
ALL SORTS: SCHOOLS,
MULTI-SPECIALTY CLINICS, ADA
CLINICS, ADULT SERVICES
PROVIDERS ALL MAKE UP OUR
MEMBERSHIP, AND THEY PROVIDE
AUTISM SERVICES ACROSS THE
LIFESPAN TO AUTISTIC PEOPLE ALL
OVER THE UNITED STATES.
I'M SPEAKING TO YOU TODAY
BECAUSE I WANT TO MAKE SURE AS
YOU'RE WORKING ON THE EXTRA TEE
STRATEGICPLAN FOR THE IACC THATP
SOME THINGS IN MIND.
ONE IS PROTECTING THE QUALITY OF
THE SERVICES THAT ARE PROVIDED
IN THE STRATEGIC PLAN, AND DOING
SO THROUGH A COUPLE OF THINGS.
ONE IS PRIORITIZATION OF
GENERALLY ACCEPTED STANDARDS OF
CARE.
THE COURTS IN THE UNITED STATES
AND EXAMPLES VERSUS UNITED
BEHAVIORAL HEALTH AS WELL AS OUR
FEDERAL AND STATE GOVERNMENTS
HAVE PASSED MENTAL HEALTH PARITY
LEGISLATION POINTING TO
GENERALLY ACCEPTED STANDARDS OF
CARE, AND IT'S IMPORTANT TO NOTE
THAT THERE ARE, AS AN EXAMPLE,
GENERALLY ACCEPTED STANDARDS OF
CARE FOR THE PROVISION OF
APPLIED BEHAVIOR ANALYSIS, THE
PRACTICE GUIDELINES FOR ABA ARE
ACTUALLY AVAILABLE ON OUR
WEBSITE AND HAVE BEEN
IMPLEMENTED BY SOME HEALTH
PLANS.
THE CALIFORNIA DEPARTMENT OF
INSURANCE HAS RECENTLY
RECOGNIZED THEM AS GENERALLY
ACCEPTED STANDARDS OF CARE
THERE, UNDER THEIR
SB855 REQUIREMENT.
SO AS YOU LOOK AT THE
INTERVENTION SECTION OF THE
STRATEGIC PLAN, I ASK THAT YOU
KEEP THAT IN MIND.
ADDITIONALLY, CASP RECENTLY
LAUNCHED AN ACCREDITATION
PROGRAM, TO FURTHER ENSURE
PROTECTIONS AND MEMBER
ORGANIZATIONS AND NON-MEMBER
ORGANIZATIONS CAN SEEK TO BE
ACCREDITED.
AND AGAIN, IT'S JUST ANOTHER
EFFORT TO ENSURE THAT THE
SERVICES THAT ARE BEING PROVIDED
TO AUTISTIC INDIVIDUALS ACROSS
THE LIFESPAN ARE APPROPRIATE,
THEY HAVE DIGNITY, RESPECT,
THEY'RE BASED ON EVIDENCE-BASED
PRACTICE.
SO I WANT TO THANK YOU ALL FOR
YOUR WORK TODAY.
THERE'S A LITTLE BIT MORE
INFORMATION IN THE COMMENT THAT
I WROTE.
I PROMISE IT'S NOT TOO MUCH
LONGER BUT WITH THAT, I JUST
THANK YOU FOR YOUR CONSIDERATION
AS YOU WORK ON THE STRATEGIC
PLAN TO DO YOUR VERY BEST FOR
AUTISTIC PEOPLE ALL OVER THE
COUNTRY MOVING FORWARD,
INCLUDING MY SON JACK.
THANK YOU.
>>THANK YOU SO MUCH,
MS. URSITTI, FOR SHARING YOUR
COMMENTS.
WE DO HAVE THE WRITTEN COMMENT
IN OUR PACKET TO SEEM WILL WANT
TO REVIEW THAT.
>>AND I DIDN'T COUGH.
I'M SO GLAD.
>>GREAT.
GLAD THAT WORKED OUT WELL FOR
YOU.
THANK YOU SO MUCH.
NEXT WE HAVE DR. AMY LUTZ, WHO
WOULD LIKE TO SHARE ON BEHALF OF
NATIONAL COUNCIL OF SEVERE
AUTISM.
>>THANK YOU, DR. DANIELS, AND
THANK YOU TO EVERYONE ON THE
COMMITTEE FOR THE OPPORTUNITY TO
SPEAK.
THE NATIONAL COUNCIL ON SEVERE
AUTISM IS EXTREMELY ALARMED AT
RECENT EFFORTS TO CLEANSE THE
IACC, ITS STRATEGIC PLAN AND
AUTISM RESEARCH MORE BROADLY OF
BASIC ACCURATE AND MEANINGFUL
LANGUAGE LIKE BEHAVIOR, RISK FOR
AUTISM, AND QUALITY OF LIFE.
THE CLEAR TREND HERE IS TO
MANDATE LANGUAGE THAT TREATS
AUTISM AS A NEUTRAL CONDITION OR
DIFFERENCE.
BUT CONGRESS DID NOT PASS THE
CARES ACT AND ALLOCATE HUNDREDS
OF MILLIONS OF DOLLARS TO
RESEARCH BECAUSE AUTISM IS A
NEUTRAL CONDITION.
THAT AN AUTISTIC CHILD CANNOT
LEARN TO SPEAK OR DEVELOP
ABSTRACT THOUGHT IS NOT NEUTRAL.
THE ABNORMAL NEUROGENESIS,
NEURAL MIGRATION, SNAP TOE
GENESIS AND NEURAL CONNECTIVITY
EVIDENT IN AUTISM ARE NOT
NEUTRAL.
THAT AN AUTISTIC INDIVIDUAL
ENGAGES IN SELF-INJURY OR
PERPETUALLY ELOPES OR DESTROYS
PROPERTY IS NOT NEUTRAL.
THAT COUNTLESS SIBLINGS LIVE IN
FEAR OF BEING ATTACKED BY THEIR
AUTISTIC BROTHER OR SISTER IS
NOT NEUTRAL.
THAT AN AUTISTIC INDIVIDUAL
FACES LIFE-THREATENING SEIZURES,
PICA OR GASTROINTESTINAL
DISTRESS IS NOT NEUTRAL.
THAT AN AUTISTIC CHILD SUFFERS
UNRELENTING INSOMNIA CAUSING
FAMILY-WIDE SLEEP DEPRIVATION IS
NOT NEUTRAL.
THAT PARENTS MUST SACRIFICE
CAREERS, INCOMES AND THEIR OWN
INDEPENDENT LIVES TO PERMANENTLY
CARE FOR SERIOUSLY DISABLED
AUTISTIC CHILDREN AND ADULTS IS
NOT NEUTRAL.
THAT AUTISTIC CHILDREN LACK
BASIC SAFETY AWARENESS TO THE
EXTENT THEY MAY RIGIDLY REFUSE
TO EXIT A BURNING HOUSE IS
CERTAINLY NOT NEUTRAL.
THAT GROWING NUMBERS OF AUTISTIC
ADULTS LACK BASIC COGNITIVE
FUNCTIONS TO LIVE INDEPENDENTLY
IS NOT NEUTRAL.
THAT WE SUFFER A TERRIBLE
SHORTAGE OF INPATIENT
PLACEMENTS, CRISIS CARE CENTERS,
CHILD AND ADULT PSYCHIATRISTS,
MEDICAL PERSONNEL TRAINED IN
AUTISM, AND RESIDENTIAL SUPPORT
CENTERS TO TREAT THE SURGING
POPULATION DISABLED BY AUTISM IS
NOT NEUTRAL.
THE STEADY GROWTH OF AUTISM
PREVALENCE NOW CLOSING IN ON 3%
OF U.S. CHILDREN AND 5% IN SOME
AREAS IS A NATIONAL CRISIS AND
NOT REMOTELY NEUTRAL.
THERE IS NOTHING INCLUSIVE ABOUT
NEUTRAL OR STRENGTH-SPACE
LANGUAGE THAT SPECIFICALLY
EXCLUDES OR DENIES REALITIES OF
AUTISM, PARTICULARLY SEVERE OR
PROFOUND AUTISM.
THIS IS A HIGH STAKES DEBATE.
WE MUST ENSURE ALL FEDERAL
EFFORTS RELATING TO AUTISM ARE
BASED ON REALITY, NOT FACT SEE.
FANTASY.
IF WE MUST BE NEUTRAL ABOUT
AUTISM, WE CAN'T EMPHASIZE THE
MOST URGENT PRIORITIES FACING
OUR COMMUNITY.
WE URGE THE IACC AND ITS
STRATEGIC PLAN TO FULLY INCLUDE
ALL REALITIES OF AUTISM,
INCLUDING ESPECIALLY ITS MOST
SEVERE MANIFESTATIONS, AND TO
FOCUS ON TRUE COMMUNITY
PRIORITIES USING LANGUAGE THAT
ACCURATELY AND MEANINGFULLY
CAPTURES OUR COMMUNITY'S
DESPERATE NEEDS.
THANK YOU SO MUCH.
>>THANK YOU, DR. LUTZ.
WE APPRECIATE YOU SHARING YOUR
PERSPECTIVES AND COMMENTS WITH
THE COMMITTEE.
NEXT I'D LIKE TO CALL ON AMY
MONMONTIMURO FROM ABILIS TO SHAE
HER COMMENTS.
>>THANK YOU.
ABILIS IS A CONNECTICUT
NON-PROFIT SUPPORTING OVER 800
INDIVIDUALS WITH DISABILITIES
AND THEIR FAMILIES.
45% OF THE ADULTS WHO SUPPORT
HAVE AUTISM.
WE LAUNCHED OUR SUPPORTIVE
TYPING PROGRAM AFTER INCREDIBLE
OUTCOMES FROM A SMALL SAMPLE IN
FEBRUARY OF 2019.
A STEP PARTICIPANT WHOSE LIFE
HAS BEEN TRANSFORMED BECAUSE OF
OUR PROGRAM TYPE PPED THE
FOLLOWING: M I AM FREE NOW OF
THE FRUSTRATION OF NOT BEING
ABLE TO TELL YOU MY THOUGHTS AND
THAT HAS MADE A HUGE DIFFERENCE.
PEOPLE SEE ME DIFFERENTLY AND I
THINK DIFFERENTLY.
I NOW HAVE HOPE FOR FREEDOM IN
MY LIFE THAT I'VE NEVER HAD
BEFORE.
PLEASE GIVE ME AND OTHERS LIKE
ME THE CHANCE TO BE THE PEOPLE
THAT WE REALLY ARE.
ABILIS STRIVES TO CREATE A
COMMUNITY OF TYPIERS AND
FACILITATORS USING BEST
PRACTICES TO ENSURE WORDS BEING
TYPED ARE THE PERSON'S OWN
AUTHENTIC VOICE.
FOR THREE INDIVIDUALS WHO ARE
PART OF OUR 2019 SAMPLE,
INDEPENDENT TYPING IS NOW AN
EMERGING SKILL.
IN MARCH OF 2020, WITH THE ONSET
OF COVID, OUR STEP PROGRAM MOVED
TO AN ONLINE COACHING, TRAINING,
SOCIAL GROUPS AND WORKSHOPS.
THIS UNEXPECTED SHIFT ALLOWED US
TO REACH WAY BEYOND OUR
CATCHMENT AREA.
WE HAVE WORKED WITH TYPIERS AND
FACILITATORS FROM 18 STATES AND
FIVE COUNTRIES.
DURING THE PAST TWO YEARS
THROUGH ZOOM, WE HAVE TRAINED
OVER 175 FACILITATORS, WHICH
INCLUDES PARENTS AND STAFF
MEMBERS FROM OS LIKE ABILIS
AROUND THE COUNTRY.
IN SOME STATES, THERE HAS BEEN
GOVERNMENT FUNDING FOR INITIAL
ASSESSMENTS, ONGOING COACHING,
SOCIAL GROUP -- SOME STATES
REIMBURSE SERVICES PROVIDED BY
OUR PROGRAM THROUGH
SELF-DETERMINATION.
OUR CLIENTS AND THEIR FAMILIES
OFTEN DESCRIBE THE SIGNIFICANT
LIFE CHANGES THAT OCCUR WHEN
SOMEONE LEARNS TO TYPE TO
COMMUNICATE.
HOWEVER, MANY SCHOOL DISTRICTS
DENY ACCESS TO THESE TYPING
METHODS EVEN AFTER PARENTS AND
THERAPISTS HAVE DEMONSTRATED
SUCCESSFUL COMMUNICATION WHEN
THEIR AUTISTIC CHILD IS TRAINED
WITH A COMMUNICATION PARTNER.
POLICY STATEMENTS FROM SOME
PROFESSIONALS OR SOME
PROFESSIONAL ORGANIZATIONS
STIFLES EDUCATIONAL
OPPORTUNITIES FOR MANY.
THEIR ARGUMENTS RELY ON DATED,
LIMITED, FLAWED RESEARCH TO DENY
SERVICES.
COMMUNICATORS FEEL UNSEEN,
DISRESPECTED AND INCREDIBLY
FRUSTRATED.
WE ASK THAT THE IACC RECOGNIZE
THAT SOME FORMS OF AAC SUCH AS
XC, RPM AND S2C ARE CURRENTLY
BEING UTILIZED AND ARE WORTHY OF
FURTHER SCIENTIFIC INQUIRY.
WE SUGGEST THE FOLLOWING
RESEARCH OPPORTUNITIES.
HOW CAN WE BETTER IDENTIFY
INDIVIDUALS WHO WILL BENEFIT
FROM FCRPM AND S2C?
HOW DO INDIVIDUALS WITH THE
COMMUNICATION PARTNER LEARN
INDEPENDENCE?
AND HOW CAN WE MEASURE THE
COGNITIVE AND SOCIAL/EMOTIONAL
GROWTH OF TYPIERS AND THE IMPACT
ON INDEPENDENT LIFE SKILLS?
THANK YOU VERY MUCH.
>>THANK YOU, MS. MONTIMURO, FOR
SHARING THOSE COMMENTS WITH US.
WE APPRECIATE IT.
NEXT I'D LIKE TO CALL ON RIEKO
SHEPHERD TO SHARE COMMENTS ON
BEHALF OF THE AUTISM WOMEN AND
NON-BINARY NETWORK.
>>THANK YOU.
I JUST WANT TO MAKE A QUICK NOTE
THAT I REPRESENT THE AUTISTIC
WOMEN AND NON-BINARY NETWORK, SO
IF YOU'RE LOOKING FOR US, THE A
SHOULD STAND FOR AUTISTIC.
AWN TOGETHER WITH THE AUTISTIC
PEOPLE OF COLOR FUND APPRECIATE
THE OPPORTUNITY TO SUBMIT
COMMENTARY TO THE IACC TODAY.
AWN IS A NATIONAL NON-PROFIT
THAT SUPPORTS WOMEN, GIRLS,
TRANS FEMININE AND TRANS
MASCULINE NON-BINARY PEOPLE AND
PEOPLE OF ALL GENDERS.
TOGETHER TO DIRECT POLICY
RESEARCH AND COMMUNITY ADVOCACY
TO ADVANCE HEALTH AND
INDEPENDENCE OF ALL DISABLED
PEOPLE.
ALL AUTISTIC PEOPLE ARE AT A
HIGHER RISK OF UNEMPLOYMENT,
POORER HEALTH AND OTHER ADVERSE
OUTCOMES THAN THEIR NON-AUTISTIC
COUNTERPART.
HOWEVER, THEY FACE FURTHER
OPPRESSION ON ACCOUNT OF RACISM,
ANTI-QUEER DISCRIMINATION AND
ANTI-IMMIGRANT PREJUDICE.
WHEN RESEARCH STUDIES DO NOT
INCLUDE OR FOCUS ON DIVERSE
POPULATIONS, THIS LACK OF
INFORMATION CAN BE
MISINTERPRETED AS INDICATING A
LOWER PREVALENCE OF AUTISM,
WHICH IN TURN CAN LEAD TO
UNDERFUNDING SERVICES THAT COULD
BEST SUPPORT AND RESPOND TO THE
SPECIFIC NEEDS OF THESE
MARGINALIZED COMMUNITIES.
WE URGE THE IACC TO PRIORITIZE
THE FOLLOWING RESEARCH TOPICS
AND ALSO ENSURE THAT THIS
RESEARCH IS INFORMED AND LED BY
AUTISTIC PRINCIPAL AND
CO-PRINCIPAL INVESTIGATORS.
THE FIRST TOPIC IS EXPLORING THE
IMPACT OF RACISM AND
ANTIIMMIGRANT DISCRIMINATION ON
THE MENTAL HEALTH OF YOU A TIS C
PEOPLE.
SYSTEMIC RACISM AND
ANTI-IMMIGRANT DISCRIMINATION
CONTRIBUTE TO INCREASED RATES
AND SEVERITY OF PSYCHOLOGICAL
DISTRESS, BUT WE NEED MORE
EMPIRICAL RESEARCH TO PROVIDE
THOSE APPROPRIATE SUPPORTS.
TWO, THE PREVALENCE OF SCHOOL
EXCLUSIONS AND COURT INVOLVEMENT
FOR YOU A TITIOFOR AUTISTIC STU.
MOST FOCUS ON STUDENTS WITH
DISABILITIES AS A WHOLE BUT YOUU
AUTISTIC STUDENTS OF COLORS MAY
NEED STRATEGIES TO PROTECT THEM.
THREE, HEALTH DISPARITIES FOCUS
ON AUTISTIC PEOPLE OF COLOR.
LGBTQ CLASS OF AUTISTIC PEOPLE
AND AUTISTIC IMMIGRANTS AND
REFUGEES WITH A GOAL OF
DEVELOPING GUIDELINES AND
STANDARDS AND CULTURAL
COMPETENCY AND COMMUNICATION
ACCESS.
FOUR, PREVALENCE OF HOUSING
INSTABILITY FOR AUTISTIC PEOPLE
WITH ADDITIONAL DEMOGRAPHIC
ANALYSIS ACROSS RACE, LGBTQ-PLUS
STATUS, AND IMGRAND ANTI/OR
REFUGEE STATUS.
FIVE, EMPLOYMENT RATES FOR
AUTISTIC PEOPLE WITH ADDITIONAL
DEMOGRAPHIC ANALYSIS ACROSS
RACE, LGBTQ+ STATUS AND IMGRAND
AND/OR REFUGEE STATUS WITH THE
GOAL OF DEVELOPING STRATEGIES
FOR INCREASING COMPETITIVE,
INTEGRATED EMPLOYMENT.
SIX, THE EFFECTS OF LINGUISTIC
AND CULTURAL BARRIERS ON
AUTISTIC IMMIGRANTS AND REFUGEE,
ADJUSTING TO LIFE IN THE UNITED
STATES.
AND SEVEN, RESEARCH EXPLORING
NEGATIVE REPERCUSSIONS OR
PERMANENT PUNISHMENTS FOR
FORMERLY INCARCERATED AUTISTIC
PEOPLE INCLUDING BUT NOT LIMITED
TO HOUSING OR EDUCATIONAL
OUTCOMES OR HEALTH OUTCOMES WITH
ADDITIONAL DEMOGRAPHIC ANALYSIS
ACROSS RACE, LGBTQ+ STATUS,
IMMIGRANT OR REFUGEE STATUS, AND
FINALLY EIGHT, ACCESS TO
ALTERNATIVE AND AUGMENTIVE
COMMUNICATION TO THE SAME
DEMOGRAPHIC CRITERIA I
PREVIOUSLY LISTED.
THANK YOU.
>>THANK YOU SO MUCH,
MS. SHEPHERD, FOR SHARING THOSE
COMMENTS.
WE APPRECIATE YOU BEING HERE.
FINALLY, I'D LIKE TO HEAR FROM
ELLIOT GAVIN KEENAN.
>>HI.
THANK YOU VERY MUCH FOR HEARING
MY COMMENT TODAY.
MY NAME IS ELLIOT GAVIN KEENAN.
I'M A DOCTORAL CANDIDATE AT UCL
A AND A VISITING SCHOLAR AT
STONY BROOK UNIVERSITY.
I STUDY AUTISM AND I AM ALSO
AUTISTIC.
I WAS DIAGNOSED AT THE AGE OF 6.
MY PARENTS WERE TOLD THAT I WAS,
QUOTE-UNQUOTE, HIGH FUNCTIONING.
I WANT TO TALK ABOUT THIS
CONCEPT TODAY.
WHAT DOES IT MEAN TO BE HIGH OR
LOW FUNCTIONING OR
ALTERNATIVELY, TO HAVE SEVERE
AUTISM?
FOR ME, WHAT MY PARENTS WERE
TOLD WHEN I WAS 6 WAS AN
IMPORTANT AND MEANINGFUL WAY, A
LIE.
I HAVE BIPOLAR 1 DISORDER.
WHEN I WAS 9 YEARS OLD, I FELL
INTO A DARK DEPRESSION THAT
LASTED FOR SEVERAL YEARS.
THIS WAS DUE TO THE GENES THAT I
WAS BORN WITH, AND MANY OF THOSE
GENES ARE THE SAME GENES THAT
HAVE BEEN IDENTIFIED AS CAUSING
AUTISM.
MY NORMAL IS FAR FROM THE NORMAL
DAY TO DAY LIFE MOST PARENTS
ENVISION FOR THEIR CHILDREN.
OVER THE PAST SEVERAL YEARS, I
HAVE BEEN HOSPITALIZED 20 TIMES
IN A LOCKED INPATIENT
PSYCHIATRIC UNIT.
WHENEVER PEOPLE POST GUIDELINES
ON WHAT CONSTITUTES HIGH OR LOW
FUNCTIONING, I CAN'T HELP ABOUT
COMPARE MYSELF TO WHATEVER
ARBITRARY METRIC IS BEING
TAUGHTED TODAY TO CAPTURE WHAT
IS REALLY AN INAFFABLE SORT OF
QUALITY.
LIVING INDEPENDENTLY, WE TRIED
IT AND FAILED.
MY PARENTS NOW KEEP ME IN THEIR
HOME.
PERSONAL SAFETY OR NEED FOR
SUPERVISION, I'M CHRONICALLY
SUICIDAL AND HAVE A HISTORY OF
MEDICALLY SERIOUS DRUG OVERDOSE.
HYGIENE?
SHOWERING ONCE A WEEK ISN'T THAT
BAD FOR ME, AND I WON'T BRUSH MY
TEETH UNLESS SOMEONE PHYSICALLY
FORCES ME, DRAGS ME TO THE SINK.
IT MAY SEEM ODD TO INCLUDE
BIPOLARITY IN OUR ASSESSMENT OF
FUNCTIONING AS IT RELATES TO
AUTISM, BUT THAT'S JUST THE
THING.
WE'VE BEEN BUNDLING INTELLECTUAL
DISABILITY TOGETHER WITH AUTISM
LIKE A BUY ONE, GET ONE GIFT FOR
YEARS.
TRUE, NOT EVERY CONDITION THAT A
PERSON CAN EXPERIENCE IS
CO-MORBID WITH AUTISM AT THE
POPULATION LEVEL.
BUT MANY ARE.
I'M TALKING ABOUT ALMOST EVERY
PSYCHIATRIC DISORDER: EPILEPSY,
GI PROBLEMS AND MORE.
IF THESE CONDITIONS IMPACT LEVEL
OF FUNCTIONING, IS THAT NOT THE
SEVERITY OF AUTISM?
BY DISASSOCIATING THE PARTS OF
ONE GREATER ENTITY INTEREST EACH
OTHER, WE CAN FIT THEM INTO NEAT
LITTLE BOXES AND MINIMIZE THE
IMPORTANCE OF SOME.
I HUMBLY ASK THE IACC TO
CONSIDER IN THE CONTEXT OF
MODERN CONTROVERSY THE ROLE
CO-MORBID CONDITIONS PLAY IN THE
SEVERITY OR SUPPORT NEEDS OF
AUTISM.
AND HOW FUNCTIONING CATEGORIES
MAY BE MISLEADING.
PEOPLE DON'T FOLLOW STRAIGHT
LINES.
A LOT OF RHETORIC THESE DISPLAYS
ON THE PERCEIVED IMPOSSIBILITY
OF A HIGH FUNCTIONING ADULTERY
GRESSING INTO LOW FUNCTIONING.
BUT THESE LABELS AREN'T
INDIVIDUALS.
THEY'RE STATES OF EXPERIENCE
THAT WE MAY LIVE IN OR PASS
THROUGH ON OUR JOURNEYS.
FINALLY, WITH HE NEE WE NEED TOY
CO-MORBID CONDITIONS IN AUTISM
ACROSS ALL LEVELS OF
FUNCTIONING.
>>THANK YOU SO MUCH,
MR. KEENAN, FOR YOUR COMMENTS AS
WELL, AND THANK YOU TO ALL OF
YOU, ALL OF THE COMMENTS THAT
YOU'VE SHARED ARE RELATED TO
DIFFERENT PARTS OF OUR STRATEGIC
PLAN AND AS YOU MAY HAVE HEARD
IF YOU LISTENED TO OUR SESSION
EARLIER, OUR COMMITTEE IS
WORKING VERY HARD ON THAT
STRATEGIC PLAN AND I KNOW THAT
THEY WILL TAKE YOUR COMMENTS
INTO CONSIDERATION.
SO NEXT I'D LIKE TO MOVE TO THE
WRITTEN COMMENTS, JUST TO GIVE
YOU A SENSE OF WHAT WE RECEIVED,
THE FULL PACKET IS ONLINE ON OUR
WEBSITE AND OUR MEMBERS AS WELL
AS THE MEMBERS OF THE PUBLIC CAN
ACCESS THESE COMMENTS TO READ
THEM IN FULL.
WE'RE NOT ABLE TO OBVIOUSLY HEAR
ALL OF THEM IN THIS MEETING AS
THERE ARE MANY, BUT WE HAD 43
COMMENTS THAT RELATE TO RESEARCH
AND SERVICE NEEDS, RESOURCES AND
POLICY IMPLICATIONS, AND ALL THE
PEOPLE THAT PROVIDED THESE
COMMENTS ARE LISTED HERE.
WE HAD 15 COMMENTS ON RESEARCH
SERVICES AND SUPPORTS FOR ADULTS
ON THE AUTISM SPECTRUM.
FIVE COMMENTS ON AUGMENTIVE AND
ALTERNATIVE COMMUNICATION.
SIX COMMENTS ON INCLUSION OF
AUTISTIC PERSPECTIVES IN
RESEARCH.
NINE COMMENTS ONCO-OCCURRING
MENTAL HEALTH CONDITIONS AND
NEGATIVE LIFE EXPERIENCES.
11 COMMENTS ON ADDRESSING THE
NEEDS OF AUTISTIC INDIVIDUALS
WITH HIGH SUPPORT NEEDS.
FIVE COMMENTS ON CONCERN ABOUT
MEDICAL PRACTICES.
THREE COMMENTS ON INCREASING
AUTISM ACCEPTANCE AND REDUCING
STIGMA.
FIVE COMMENTS ON THE ROLE OF THE
IACC AND THE FEDERAL GOVERNMENT.
FOUR ON EMPLOYMENT.
FOUR COMMENTS ON POTENTIAL
CAUSES OF AUTISM.
AND ONE COMMENT ON WANDERING AND
SAFETY.
SO YOU CAN READ ALL OF THOSE IN
FULL AND I KNOW THAT THE
COMMITTEE RECEIVED THESE IN
ADVANCE AND MANY OF YOU HAVE HAD
TIME TO READ THROUGH THESE
COMMENTS.
SO NEXT -- OH, THERE SHOULD BE A
DISCUSSION SLIDE THERE, BUT WE
HAVE TIME FOR THE COMMITTEE TO
DISCUSS THESE COMMENTS.
AND DR. GORDON, I DON'T KNOW IF
YOU'D LIKE TO START WITH SOME
COMMENTS FOR THE DISCUSSION.
>>WELL, FIRST OF ALL, I WANT TO
THANK THE ORAL AND WRITTEN
COMMENTERS FOR GIVING US A LOT
OF FOOD FOR THOUGHT.
I THINK, SUE SARNTION YOU LAID R
TASK QUITE NICELY, WHICH IS TO
CONSIDER THE COMMENTS THAT WE'VE
HEARD TODAY, AND THINK ABOUT
WHETHER, AS WE REVISE THAT
STRATEGIC PLAN, WE WANT TO
INCLUDE IN IT, IF IT'S NOT
ADEQUATELY INCLUDED OR STRESS
DIFFERENTLY, DIFFERENT ELEMENTS
OF CONSIDERATION BASED UPON
THOSE COMMENTS.
AS ALWAYS, AS I SHOULD SAY AS
ALWAYS, AS WE'VE DONE FOR
SEVERAL YEARS NOW BASICALLY
SINCE I TOOK OVER, WE'RE GOING
TO HAVE -- WE'VE DEVOTED A
PERIOD OF TIME FOR THE COMMITTEE
TO DISCUSS ANY OF THE ISSUES
THAT WERE RAISED DURING THE
COMMENTS, AND INCLUDING THINGS
THAT YOU AGREE WITH OR THINGS
THAT YOU MAY NOT AGREE WITH.
THE FLOOR IS OPEN TO MEMBERS OF
THE COMMITTEE. FOR QUESTIONS AND
COMMENTS.
DENA, GO RIGHT AHEAD.
AND OTHERS, I SHOULD SAY WHILE
DENA GETS READY AND UNMUTES
HERSELF, SHOULD FEEL FREE TO
RAISE THEIR HANDS TO GET IN THE
QUEUE, IF YOU HAVE SOMETHING TO
OFFER.
AND I WOULD ASK THOSE OF YOU WHO
ARE SPEAKING, AGAIN, IF YOU FEEL
COMFORTABLE, TO TURN ON YOUR
VIDEOS SO THAT YOU CAN SPEAK AND
ALSO REMINDER THAT IF YOU WOULD
PREFER TO DO SO, YOU CAN SEND
THE COMMENTS THROUGH THE CHAT
FUNCTION TO THE "SEND COMMENT
HERE" INDIVIDUAL AND THEY WILL
BE READ.
BUT IF YOU WOULD RAISE YOUR HAND
SO THAT WE CAN KEEP IT IN THE
RIGHT ORDER, THAT WOULD BE
HELPFUL EVEN IF YOU SUBMITTED
YOUR COMMENT IN WRITING.
>>I'M SORRY, BUT OUR CAMERAS
ARE BEING BLOCKED.
>>OH, THEY ARE?
OKAY.
WE'LL SEE WHAT WE CAN DO ABOUT
THAT.
THE HOST CAN UNBLOCK THE CAMERAS
FROM THE IACC MEMBERS, THAT
WOULD BE HELPFUL.
>>THANK YOU.
>>GO RIGHT AHEAD.
>>I DIDN'T HAVE SO MUCH OF A
COMMENT AS I WANTED TO JUST
CHAMPION A COUPLE OF THE
COMMENTS WE GOT.
I AM EXTREMELY EXCITED ABOUT THE
SHEER AMOUNT OF FEEDBACK WE'RE
GETTING.
I THINK THIS IS UNPRECEDENTED.
I DID WANT TO POINT OUT THAT WE
SPENT A LOT OF TIME THIS MORNING
TALKING ABOUT EMPLOYMENT, BUT
THE REALITY OF IT IS THE VAST
MAJORITY OF PEOPLE LIVING WITH
AUTISM ARE NOT GOING TO BE ABLE
TO WORK FULL TIME.
SO ALL THE COMMENTS THAT CAME IN
AROUND HAVING A MORE MEANINGFUL
LIFE EXPERIENCE AFTER 18 ACROSS
THE AUTISM SPECTRUM WAS
CERTAINLY VERY IMPORTANT, AND I
THINK WE'RE NOT GIVING THAT
ENOUGH ATTENTION.
I DID WANT TO THANK RIEKO
SHEPHERD AND FINN FOR IMMIGRANT
NEEDS, SCHOOL TO PRISON
PIPELINE.
I THINK WE CAN TALK MORE ABOUT
THAT ANOTHER TIME.
HOMELESSNESS, AND OVERALL
HEALTHCARE ACCESS.
I LIKE SHANNON'S COMMENTS ABOUT
ANESTHESIA.
I KNOW WE THINK ABOUT ANESTHESIA
FREQUENTLY WHEN WE TALK ABOUT
ISSUES RELATED TO DENTAL CARE
BUT WE DON'T TALK ABOUT IT FOR
REPRODUCTIVE HEALTHCARE AND I
THINK IT COULD BE VERY HELPFUL
IN BOOSTING THE NUMBER OF
AUTISTIC WOMEN WHO WILL
PARTICIPATE IN REPRODUCTIVE
HEALTHCARE ACCESS.
I WANTED TO JUST POINT OUT TO
PEOPLE THAT IN THE ROUND ROBIN,
THE AGENCY FOR HEALTHCARE
RESEARCH AND QUALITY IS SEEKING
COMMENTARY ON MULTIPLE CHRONIC
CONDITIONS, THAT MULTIPLICITY
PIECE.
SO THOSE OF YOU WHO WROTE IN
ABOUT THE MULTIPLE DIMENSIONS OF
CO-OCCURRING CONDITIONS MAY WANT
TO COMMENT THERE.
I DO WANT TO SAY IF VIOLA
SANCHEZ IS LISTENING, IF SHE'LL
REACH OUT TO THE COMMITTEE, I'D
LOVE TO TALK TO HER ABOUT HER
SOCIAL SECURITY APPEAL.
AND THEN LASTLY, I JUST WANT TO
SAY THAT, YOU KNOW, I'M SO
EXCITED ABOUT HOW OUR LANGUAGE
IS EVOLVING.
WE STARTED OUT WITH TERMS IN OUR
HISTORY LIKE IDIOT AND MORON AND
MENTALLY RETARDED, AND NOW WE'RE
LEANING TOWARD MORE
COMPASSIONATE AND DIGNIFIED
LANGUAGE THAT'S MORE RESPECTFUL
OF THE HUMAN CONDITION ACROSS
THE SPECTRUM.
GIVEN THAT, YOU KNOW, WE KNOW
THAT EVERY SINGLE FEATURE OF
AUTISM PRESENTS ACROSS THE BOARD
IN TERMS OF THE AUTISM SPECTRUM.
I'M JUST REALLY HAPPY THAT WE
ARE REPRESENTING AND SUPPORTING
THE NEEDS OF THE ENTIRETY OF THE
AUTISM SPECTRUM.
EVERY TIME WE BRING UP GASTRO
ISSUES, MENTAL HEALTH,
REPRODUCTIVE HEALTHCARE,
DIFFICULTIES WITH PEOPLE BEING
EMPLOYED, YOU KNOW, THE POINT
THAT PAUL MADE ABOUT A FOURTH OF
TEENAGERS LIVING IN HOMES BELOW
THE POVERTY LINE REFLECTS THE
LACK OF SERVICES THAT FORCE
WOMEN AND OTHER PROVIDERS OUT OF
THE WORKFORCE.
SO I JUST -- I'M REALLY HAPPY TO
BE PART OF THIS COMMUNITY, AND I
HOPE WE CAN CONTINUE TO WORK
COLLABORATIVELY TO RESOLVE SOME
OF THESE ISSUES.
>>THANK YOU, DENA.
>>I SEE JALYNN HAS HER HAND UP
NEXT.
GO AHEAD, JALYNN.
I SEE MORENICA, SCOTT AND
IVANOVA AFTERWARDS.
GO AHEAD, JALYNN.
>>THANK YOU.
I REALLY APPRECIATED AMY'S
COMMENTS.
THIS IS AN AREA THAT WE HAVE
BECOME MORE AND MORE FAMILIAR
WITH ALL ALONG THE WAY.
SOMETIMES REFERRED TO AS EXTREME
AUTISM, AND WE'VE BEEN MADE VERY
MUCH AWARE OF VERY FEW PLACES OR
LOCATIONS WHERE FAMILIES CAN
TURN FOR THIS WILL TYPE OF
HEALTH, AND JUST LAST NIGHT, I
WAS REMINDED BY A SISTER-IN-LAW
OF A WOMAN WHO HAD BEEN VERY
CAPABLE, WHO WAS ON THE SPECTRUM
WHO HAD WORKED IN A COFFEE SHOP
THAT HAD A VERY PRODUCTIVE LIFE.
A COUPLE OF THINGS HAPPENED
WITHIN HER FAMILY, AND SHE
REGRESSED AND IS 45 NOW, AND IS
IN A MEDICAL CARE SITUATION
BECAUSE THE FAMILY CAN'T HAVE
HER AT HOME BECAUSE THEY CAN'T
REGULATE ALL THE MEDS THAT SHE
NEEDS.
BUT THE PROGRAM THAT SHE'S IN IS
SO VERY INAPPROPRIATE FOR HER
BECAUSE IF THEY ADMINISTER THE
DRUGS AND MAYBE HAVE PHYSICAL
EXERCISE ONCE A WEEK, THAT IS
SUFFICIENT.
BUT IT'S NOT SUFFICIENT ENOUGH
FOR HER MENTALLY TO GET BACK TO
WHERE SHE WAS TO REPRODUCTIVE --
AND TO WORK.
AND I'M NOT SEEING PLACES AND
I'M NOT UNDERSTANDING THAT THERE
ARE MANY PLACES THAT PEOPLE CAN
GO TO HAVE THIS REMEDIATION,
PERHAPS, MAYBE IT WOULD BE MORE
LONG TERM.
BUT NO ONE WANTS TO SEE
INSTITUTIONS, BUT I DON'T THINK
ANYONE WANTS TO SEE NEGLECT
EITHER, OR TO SEE HUMAN
POTENTIAL NOT REALIZED.
AND HOW DO WE COME TO THAT.
AND I THINK IT'S A HEALTHY
DEBATE THAT WE NEED TO HAVE.
AND IT RANGES FROM THERE TO LOW
SUPPORT NEEDS, BUT LOW SUPPORT
NEEDS DOESN'T MEAN NO SUPPORT
NEEDS.
SOL WE'VE GOT A LOT OF BALANCING
TO DO THERE, AND I WOULD LOVE TO
SEE THAT TYPE OF CONVERSATION
COMING IN, HOW DO WE ENCOURAGE
WHAT IS IT THAT IS NEEDING TO BE
DONE, BECAUSE THERE ARE HUNDREDS
OF FAMILIES THAT ARE PLEADING,
CRYING, NEEDING TO MOVE ON WITH
THEIR LIVES, WITH THEIR
CHILDREN'S LIVES, WITH THEIR
GRANDCHILDREN'S LIVES AND
THEY'RE UNABLE TO DO SO.
THANK YOU.
>>THANK YOU, JALYNN.
NEXT WE HAVE MORENIKE.
DO YOU HAVE A COMMENT FOR US?
>>HI THERE.
THEY ASKED ME TO READ THEIR
COMMENT FOR THEM.
>>THANK YOU.
>>I LACK THE VOCABULARY
NECESSARY TO ADEQUATELY CONVEY
HOW EMOTIONALLY DRAINING IT IS
TO HAVE TO FEND OFF THE
MISCHARACTERIZATIONS AND
DISTORTIONS THAT THE NUMBERS OF
THE NATIONAL COUNCIL FOR SEVERE
AUTISM, AMY LUTZ, JILL, ALISON
AND OTHERS, EVERY TIME THERE IS
AN IACC MEETING, AS WELL AS
THEIR SOCIAL MEDIA GASLIGHTING.
HISTORYONICSS AND FALSE NEWS
ASIDE, LET'S NOT PRETEND THIS IS
A WAR BETWEEN AUTISTIC IACC
MEMBERS AND EVERYONE ELSE.
WE WISH FOR ALL PEOPLE ON THE
SPECTRUM TO BE DISCUSSED,
ADDRESSED AND DESCRIBED IN A
RESPECTFUL, NON-STIGMATIZING
MANNER, AND TO HAVE THE
PERSONALIZED SUPPORT AND
RESOURCES THAT ARE NEEDED
REGARDLESS OF THEIR LEVEL OF
FUNCTIONING.
LET'S DISSECT JUST ONE OF THE
TERMS THAT HAS BEEN DESCRIBED AS
BASIC, ACCURATE AND MEANINGFUL
LANGUAGE THAT IS ALLEGEDLY
NECESSARY AND PREFERABLE OVER
NEUTRAL LANGUAGE.
HOW ABOUT RISK FOR AUTISM?
WHY WOULD IT BE MORE RESPECTFUL
TO USE LIKELIHOOD OF AUTISM
RATHER THAN RISK?
THE FIRST KNOWN USE OF THE WORD
RISK WAS IN THE 1600s.
IT WAS SYNONYMOUS WITH HAZARD
AND WAS INTENDED TO REFER TO
SOMETHING BEING A SOURCE OF
HARM.
RISK ACCORDING TO CAMBRIDGE
MEANS THE POSSIBILITY OF
SOMETHING BAD HAPPENING,
SOMETHING BAD THAT MIGHT HAPPEN,
TO DO SOMETHING, ALTHOUGH THERE
IS A CHANCE OF A BAD RESULT
CAUSING SOMETHING TO BE IN A
DANGEROUS SITUATION.
DANGER OR THE POSSIBILITY OF
DANGER DEFEAT OUR LOSS, OR TO
GET INTO A SITUATION THAT MIGHT
HAVE A BAD RESULT.
RISK -- THE SOCIETY FOR RISK
ANALYSIS SAYS THAT RISK INVOLVES
UNCERTAINTY ABOUT THE EFFECTS,
IMPLICATIONS OF INACTIVITY WITH
RESPECT TO SOMETHING THAT HUMANS
VALUE, SUCH AS HEALTH,
WELL-BEING, WEALTH, PROPERTY, OR
THE ENVIRONMENT.
OFTEN FOCUSING ON NEGATIVE,
UNDESIRABLE CONSEQUENCES.
OXFORD UNIVERSITY DESCRIBES RISK
AS THE POSSIBILITY OF LOSS,
INJURY, OR OTHER ADVERSE OR
UNWELCOME CIRCUMSTANCES.
IT WASN'T THAT LONG AGO THAT THE
BASIC, ACCURATE AND MEANINGFUL
TERM FOR CHILDREN LIKE MINE WAS
THE R WORD.
IT WASN'T THAT LONG AGO THAT THE
BASIC ACCURATE AND MEANINGFUL
TERM FOR PEOPLE WHO LOOKED LIKE
ME WAS THE "N" WORD.
WHAT ABOUT BASIC ACCURATE AND
MEANINGFUL TERMINOLOGY SUCH AS
COLONIZERS DECIDING ZIMBABWE
SHOULD BE CALLED ROW DESHA OR
MUMBAI SHOULD BE CALLED BOMBAY?
ACCURATE TERMINOLOGY FOR PEOPLE
WHO ARE REDHEAD THS, FRECKLES AD
OLYMPIC ATHLETES ACCORDING TO
YOUR LOGIC IS MUTANT.
RED HAIR IN HUMANS IS DUE TO
CERTAIN LOSS OF FUNCTION
MUTATIONS OF ONE OF THE PEPTIDE
PRODUCTS OF THE POMC GENE, THE
MELOCORTIN1 RECEPTOR.
FREK ELSE ARE ASSOCIATED WITH
VARIANT OF A GENE CALLED MC1R.
ENDURANCE ATHLETES GENERALLY
HAVE A MUTATION IN THE
ACTN3 GENE.
YOU DON'T KNOW WHAT I OR ANY OF
THE AUTISTIC MEMBERS OF THE IACC
KNOW HAVE BEEN THROUGH OR WHAT
OUR FAMILIES HAVE BEEN THROUGH.
PICA, ENLOBEMENT, INCONTINENCE,
AGGRESSION, COMMUNICATION
CHALLENGES, GROUP HOMES.
YOU THINK THAT JUST BECAUSE YOU
CHOOSE TO -- NOT TO DISRESPECT
OUR LOVED ONES AND CRY WOE IS
ME, THAT YOU ARE THE ONLY PEOPLE
WHO HAVE EXPERIENCED SUCH
THINGS.
IT WOULD BE HILARIOUS IF IT
WASN'T SO MYOPIC, PRIVILEGED AND
INACCURATE.
>>THANK YOU SO MUCH, STEVEN,
FOR READING THOSE COMMENTS ON
BEHALF OF MORNIKE.
SCOTT, DO YOU HAVE A COMMENT?
>>THANK YOU, DR. DANIELS.
SO I WANT TO SAY FIRST THAT I
APPRECIATE THE COMMENTS ON
EMPLOYMENT, QUALITY OF LIFE,
HEALTH AND WELLNESS AND FOR
INSTANCE ON HOMELESSNESS.
WE HAD A PRIOR WORKSHOP ON THE
LAST ITERATION OF THE IACC ON
HOUSING HOMELESSNESS RELATED
ISSUES.
I DON'T KNOW IF THAT'S SOMETHING
THAT COULD BE LOOKED AT, WHAT
WAS DONE BEFORE AND FOR FUTURE
RESOURCES OR FUTURE MEETINGS.
I KNOW WE'VE SEEN INCREASING
RESEARCH STUDIES IN THAT FOCUS,
ESPECIALLY FROM INTERNATIONALLY
IN THE U.K., FOR INSTANCE,
UNITED KINGDOM ON HOMELESSNESS,
AND THE IMPACT, RIGHT?
BECAUSE YOU NEED HOUSING TO BE
ABLE TO HAVE EMPLOYMENT, TO HAVE
COMMUNITY LIVING OPPORTUNITIES,
TO THRIVE IN LIFE AND HAVE A
HIGH QUALITY OF LIFE AND IT'S
ONE OF OUR FOCUSES ON THE
EMPLOYMENT RELATED SUPPORTS TEAM
THAT I'M ON AT ODEP.
SO I ALSO HAVE -- WHILE I
APPRECIATE A LOT OF THESE
COMMENTS IN TERMS OF SHOWING A
LOT OF THE CHALLENGES FOLKS HAVE
AND SUCCESSES AND IT'S HELPED
INFORM, I THINK, WHAT WE'RE
DOING WITH ACTIVITIES FOR THE
IACC IN THE STRATEGIC PLAN, I DO
HAVE SOME CONCERNS ABOUT SOME OF
THE RHETORIC IN SOME OF THE
COMMENT AS FAR AS ON OUR USE OF,
IN THE PLAN, THE COMMITTEE'S USE
IN THE PLAN OF INCLUSIVE
LANGUAGE.
I'D LIKE TO EMPHASIZE THERE ARE
TWO REASONS THAT -- JUST FROM MY
PERSPECTIVE, AT LEAST, THAT
SHOULD UNDERGIRD OUR USE OF
INCLUSIVE LANGUAGE, ONE OF WHICH
IS AN EVIDENCE-BASED PRACTICE
FROM THE RESEARCH LITERATURE.
WE HAVE DATA THAT SHOWS THAT IT
IS BENEFICIAL TO FOLKS TO USE
INCLUSIVE, UNBIASED, RESPECTFUL,
STRENGTH-BASED LANGUAGE, THAT
IT'S VERY EMPOWERING FOR FOLKS,
AND TO NOT USE IT, TO USE
STIGMATIZING LANGUAGE CAN CAUSE
HARM TO FOLKS.
AND WE HAVE THAT FROM PERSONAL
PERSPECTIVES OF FOLKS WITH
DISABILITIES, INCLUDING AUTISTIC
PEOPLE, AND OTHER STUDIES THAT
HAVE LOOKED AT LANGUAGE RHETORIC
AND BOTH -- AND WRITTEN SYMBOLS,
VISUAL SYMBOLS, THERE ARE VISUAL
SYMBOLS INCLUDING FOR THE PUZZLE
PIECE WHERE THERE ARE PIECES OF
FOLKS' HEADS MISSING AND THINGS
LIKE THAT THAT HAVE CAUSED HARM
FOR PEOPLE INCLUDING
NON-AUTISTIC PEOPLE WHEN THEY
SEE STIGMATIZING VISUAL SYMBOLS
AND SEE AND HEAR STIGMATIZING
LANGUAGE, IT MAKES THEM THINK
DIFFERENTLY ABOUT AUTISTIC
PEOPLE TOO.
IT MAKES THEM THINK IN TERMS OF
THAT WE'RE NOT FULLY HUMAN, THAT
WE SHOULD NOT BE FULLY INCLUDED.
SO I THINK THERE ARE REASONS
FROM THE RESEARCH LITERATURE
THAT SUPPORT OUR WORK IN THIS
AREA AS FAR AS TO HAVE MORE
MODERNIZATION, I WOULD SAY, OF
INCLUSIVE, UNBIASED LANGUAGE
THAT IS RESPECTFUL AND STILL
FOCUSING ON THE BARRIERS AND
CHALLENGES THAT FOLKS WITH
DIFFERENT SUPPORT CHALLENGES MAY
HAVE IN LIFE.
I ALSO WANT TO TYPE BACK TO OUR
FOCUS ON DIVERSITY, EQUITY, IN
THE FEDERAL GOVERNMENT, WE HAVE
PRIORITIES AND THAT INCLUDES
LANGUAGE USE TOO IN TERMS OF
WHAT WE DO WITH THE PLAN, WHAT
WE'RE DOING AT AGENCIES ACROSS
THE FEDERAL GOVERNMENT FOR FOLKS
FROM DIVERSE AND
UNDERREPRESENTED BACKGROUNDS SO
LANGUAGE IS VERY MEANINGFUL AND
THE DOESN'T WE DEVELOP IS
MEANINGFUL AND HOW WE
CHARACTERIZE FOLKS WE SHOULD
THINK VERY CAREFULLY AND
STRATEGICALLY AND ALIGN WITH THE
EVOLUTION ON WHAT WE KNOW NOW
FROM AUTISM THAT WE DIDN'T KNOW
15 OR 20 YEARS AGO, RIGHT?
AND THAT WE KNOW ESPECIALLY MORE
FROM AUTISTIC PEOPLE OURSELVES,
THAT HAVE VALUED PERSPECTIVE IN
TERMS OF RHETORIC, LANGUAGE AND
CONTENT WE SHOULD DO.
SO I THINK WE'VE GONE IN A
STRONG DIRECTION IN TERMS OF THE
INCLUSIVE LANGUAGE, THE SUPPORT
FOR DEIA IN THE STRATEGIC PLAN,
SO I THINK IT'S JUST THE
PRIORITIES IN THE FEDERAL
GOVERNMENT AND THE
EVIDENCE-BASED PRACTICES FOR
INCLUSIVE LANGUAGE IS SOMETHING
THAT WE SHOULD REMEMBER IS
REASONING FOR THE USE OF
LANGUAGE IN THE MANNER IT IS IN
THE DRAFT PLAN.
THANK YOU.
>>THANK YOU, SCOTT.
AND I WOULD LIKE TO LET -- I'VE
GOT FIVE HANDS UP, EVERY PERSON
HAVE A COMMENT.
IF YOU CAN KEEP YOUR COMMENTS A
LITTLE SHORTER, THAT MIGHT HELP
US GET THROUGH IT.
I THINK WE HAVE ENOUGH TIME IN
THE SCHEDULE OVERALL TO BE ABLE
TO DO THAT.
SO IVANOVA, IF YOU COULD GO
AHEAD.
>>[INAUDIBLE]
>>YOUR AUDIO IS REALLY POOR,
IVANOVA.
WE'RE NOT UNDERSTANDING.
>>I THINK IT MAY BE A PROBLEM
WITH YOUR INTERNET CONNECTION.
>>NOW IT'S GOOD.
>>CAN YOU HEAR ME?
>>YES.
>>CAN YOU TRY IT AGAIN?
>>THIS IS IVANOVA SMITH.
AND MY COMMENT IS I WANT TO
THANK THOSE WHO GAVE COMMENTS
ABOUT HOW IT'S IMPORTANT TO HAVE
FULL ACCESS TO THE COMMUNITY, I
THINK THAT'S REALLY IMPORTANT,
I'M THANKFUL THAT SEVERAL
AUTISTIC COMMENTERS AND MORE
PEOPLE SPEAKING, WE WANT TO MAKE
SURE THAT WE'RE ALL IN THE
COMMUNITY AND UNIVERSAL DESIGN
PRINCIPLES IS HOW WE'LL GET
THERE.
I FEEL, AS WE HAVE THE MINDSET
WITH THE -- EFFECT WHERE WE HAVE
ACCESSIBILITY, ACCESSIBLE IN A
WAY THAT MAKES EVERYTHING BETTER
FOR -- MAKES IT EASIER FOR
EVERYONE TO HAVE ACCESS.
THANK YOU.
>>THANK YOU, IVANOVA.
AND JOSH, DID YOU HAVE A
COMMENT?
>>NO, I WAS JUST GOING TO THANK
HER.
>>OH.
THANK YOU.
NEXT, SAM CRANE.
DO YOU HAVE A COMMENT?
>>HI, EVERYONE I JUST WANTED
TO -- I HAD JUST TWO QUICK
COMMENTS.
ONE IS I REALLY APPRECIATED
DR. KEENAN'S COMMENTS.
I THINK THAT IT'S IMPORTANT FOR
US TO RECOGNIZE THAT JUST
BECAUSE SOMEONE IS STANDING OR
SITTING OR WHATEVER IN FRONT OF
THIS COMMITTEE TODAY, WE REALLY
DON'T KNOW WHAT THAT PERSON'S
LIFE IS AND WHAT THEIR
FUNCTIONAL SUPPORT NEEDS ARE.
AND THEN JUST TO RESPOND VERY
QUICKLY TO JALYNN'S COMMENT,
THIS IS A REALLY COMMON ISSUE.
I KNOW MAYBE 20 PEOPLE WHO MATCH
THIS DESCRIPTION THAT SHE'S
DESCRIBING OF SOMEONE WHO HAS
VERY SIGNIFICANT MEDICATION
MANAGEMENT NEEDS AND CANNOT HAVE
THEIR PATIENT MANAGED WITHOUT
SIGNIFICANT SUPPORTS.
AND THAT'S ONE REASON WHY
ADVOCATES HAVE BEEN AGITATING
PRETTY STRENUOUSLY FOR PAID,
IN-HOME SUPPORTS THAT COME INTO
A PERSON'S HOUSE AND HELP
SOMEONE WITH MEDICATION AND WITH
OTHER ACTIVITIES OF DAILY LIVING
BY KEEPING THAT PERSON IN THEIR
HOME AND THE COMMUNITY, THEY DO
RETAIN THE ABILITY TO HAVE STM
LAITSTIMULATION, TO SEE FRIENDSO
HAVE ACTIVITIES, TO TAKE WALKS.
AT SOME POINT WHEN THEY'RE
READY, THEY CAN GAIN EMPLOYMENT.
IT'S MUCH MORE DIFFICULT TO
OBTAIN EMPLOYMENT IF YOU'RE AT A
MEDICAL FACILITY.
JUST IN TERMS OF TRANSPORTATION,
THE DISCRIMINATION THAT YOU FACE
IF THAT'S YOUR ADDRESS, AND SO
THAT IS SOMETHING THAT HAS BEEN
ADDRESSED IN THE COMMUNITY FOR
MANY YEARS NOW.
>>THANK YOU, SAM, FOR SHARING
THAT.
WE APPRECIATE THAT.
EYAISHA DICKERSON.
>>I DID SEE A COMMENT ON THE
PUBLIC COMMENT ABOUT AIR TIME OF
IACC MEMBERS, AND I HAVE TO SAY,
I KIND OF AGREE THAT THERE DOES
TEND TO BE A CLUSTER OF PEOPLE
WHO MONOPOLIZE A LOT OF THE
COMMENT TIME, SO I HAD A
SUGGESTION.
AND IT'S JUST SOMETHING THAT I
DO IN MY GROUP MEETINGS.
IS THERE A WAY THAT WE CAN LIMIT
THE AMOUNT OF TIME THAT PEOPLE
HAVE DEDICATED TO COMMENT, THE
SAME WAY WE LIMIT THE AMOUNT OF
TIME DEDICATED TO PUBLIC
COMMENT?
THAT'S A SUGGESTION OPTION.
SO THAT'S ONE.
AND THEN TWO, I HAD A QUESTION
SPECIFIC TO RISK VERSUS
LIKELIHOOD.
THIS IS SOMETHING WE'VE BEEN
DISCUSSING A LOT WITHIN THE
AUTISM RESEARCH COMMUNITY.
SO RISK IS A TERM WE OFTEN USE
FOR STATISTICS LIKE RISK RATIO,
RELATIVE RISK, WHICH IS
DIFFERENT FROM A LAKELY HOOD
RATIO.
SO I WANTED TO ASK MORENIKE AND
ANYONE ELSE ON THE CALL THAT
MIGHT HAVE SUGGESTIONS, WHAT
WOULD BE A BETTER TERMINOLOGY
FOR STATISTICAL EVALUATION OF
LIKELIHOOD OF AN AUTISM
DIAGNOSIS IN RESEARCH?
AND THAT'S ALL.
>>THANK YOU FOR THAT COMMENT.
WE MIGHT HAVE TO HAVE THAT
DISCUSSION OFFLINE BECAUSE OF
THE TIME WE HAVE HERE, BUT WE
CERTAINLY CAN TAKE INTO
CONSIDERATION IF THE COMMITTEE
WOULD PROVIDE ANY COMMENTS THAT
YOU HAVE BASED ON THAT QUESTION
ABOUT WAYS THAT WE CAN DESCRIBE
LIKELIHOOD, RISK OR OTHER
RELATED CONCEPTS, YOU CAN PUT
THOSE IN YOUR STRATEGIC PLAN
COMMENTS.
>>AND ABSOLUTELY, I THINK IT'S
IMPORTANT TO RECOGNIZE THE
TERMINOLOGY WE USE IN THE
STRATEGIC PLAN IS NOT MEANT TO
BE THE TERMINOLOGY ONE WOULD USE
IN A SCIENTIFIC REPORT.
BUT I THINK AISHA, YOU'RE
APPROPRIATELY RAISING THE
QUESTION OKAY, I WANT TO LEARN
FROM THIS, IF WE'RE NOT SUPPOSED
TO USE RISK, WHICH IS A VERY
COMMONLY USED TERM FROM A
STATISTICAL PERSPECTIVE, WHAT
WORD MIGHT WE USE OTHER THAN
LIKELIHOOD BECAUSE THAT HAS ITS
OWN SCIENTIFIC MEANING THAT'S
DIFFERENT AS WELL.
SO APPRECIATE YOU RAISING THAT,
AND AS SUSAN SUGGESTS, THAT'S
SOMETHING WE CAN FOLLOW UP WITH
OFFLINE.
>>THANK YOU.
ALYCIA HALLADAY.
>>AM I BACK ON?
>>I CAN HEAR YOU.
>>GREAT, THANK YOU.
SO I WANT TO THANK YOU FOR
LETTING ME ADDRESS SOME OF THE
COMMENTS THAT HAVE BEEN MADE
BOTH IN THE PUBLIC COMMENT AS
WELL AS RESPONSE TO PUBLIC
COMMENT IN THE LAST 30 MINUTES.
I THINK THERE'S ESSENTIALLY BEEN
A MISCHARACTERIZATION AND
MISUNDERSTANDING OF PROBABLY HOW
THE MAJORITY OF PEOPLE PERCEIVE
WHAT'S ACCURATE OR WHAT'S
ACCEPTABLE TERMINOLOGY TO REFER
TO AUTISM.
IT'S CLEARLY A COMPLEX ISSUE,
AND ACTUALLY DR. GORDON, I WANT
TO ACKNOWLEDGE YOU FOR THINKING
ABOUT THIS AND PUBLISHING ABOUT
THIS WHEN IT COMES TO MENTAL
HEALTH AND SUBSTANCE ABUSE, SO
YOU'RE ACTUALLY AN EXCELLENT
PERSON TO HELP GUIDE US.
NOW WE SPEND A LOT OF TIME
TALKING ABOUT THIS, BUT IT'S
REALLY NOT AS DICHOTOMOUS AS HAS
BEEN PORTRAYED IN RECENT
ATTEMPTS TO DICTATE LANGUAGE,
AND ONE ACTUAL EXAMPLE IS WHAT
DR. DRIK DICKERSON JUST MENTION,
THE USE OF RISK WHEN YOU'RE
TALKING ABOUT STATISTICS VERSUS
RISK WHEN YOU'RE TALKING ABOUT A
PROBABILITY.
SO AGAIN, THERE'S BEEN DIVERSITY
AGAIN JUST IN THE LAST 30
MINUTES, AND TO ADD TO THAT,
SOME PEOPLE PREFER PERSON FIRST
LANGUAGE AND OTHERS PREFER
IDENTITY FIRST LANGUAGE.
SOME PEOPLE EVEN ON THIS CALL
HAVE CALLED CONDITIONS
CO-OCCURRING AND OTHERS HAVE
CALLED THEM CO-MORBID.
AND THESE ARE JUST EXAMPLES OF
MANY.
SO THERE IS A GREAT DIVERSITY.
AND WHO'S SURPRISED BY THAT?
THERE'S A GREAT DIVERSITY IN
PREFERENCE BECAUSE WE COME FROM
DIVERSE BACKGROUNDS, WE HAVE
DIFFERENT CULTURAL BACKGROUNDS,
WE LIVE IN DIFFERENT COUNTRIES.
SOME OF THE COUNTRIES WE LIVE
IN, YOU KNOW, PROVIDE SERVICES,
AND THIS IS EVEN INCLUDING THE
UNITED STATES BASED ON SOMETIMES
THE CERTAIN LANGUAGE THAT'S USED
THAT'S ESSENTIAL TO RECEIVE
THOSE SERVICES.
AND OF COURSE TERMS ARE BASED ON
CONTEXT.
WE JUST HEARD SCOTT TALK ABOUT
HOW THERE'S DATA AROUND USE OF
LANGUAGE AND HOW IT CAN BE
STIGMATIZING AND I'D LIKE TO ASK
SCOTT TO SEND ME THAT DATA OR AT
LEAST THE MANUSCRIPT PLEASE,
DON'T SEND ME THE RAW DATA.
BUT I COULDN'T HELP THINKING
WHEN I HEARD THIS, STIGMATIZING
TO WHO, AND WHO DECIDES?
THERE'S CERTAINLY A DIVERSITY OF
PREFERENCES.
AND THE COMMUNITY HAS NOW
DISCERNED WHAT IS SCIENTIFICALLY
APPROPRIATE VERSUS WHAT IS
APPROPRIATE IN MORE LIKE LAY
LANGUAGE OR DISCUSSION SETTINGS.
AND I THINK PART OF THE PROBLEM
IS THAT MANY RECENT PUBLICATIONS
HAVE LEFT NO ROOM FOR THE
DIVERSE OPINION IN THE USE OF
WORDS, INCLUDING THINGS LIKE
PERSON-FIRST VERSUS
IDENTITY-FIRST LANGUAGE OR OTHER
TERMS I'M HEARING EVEN HAVE
DIVERSE PREFERENCES.
THESE PUBLICATIONS DRAW LINES
ABOUT WORDS THAT THEY CAN BE
USED OR NOT.
NOT THAT THEY CAN BE USED IN
CERTAIN CONTEXTS.
THEY CAN EITHER BE USED OR NOT.
UNFOSHTLY THIS CAN BE SHORT
SIGHTED.
I HOPE THE IACC OR SOMEONE ELSE,
SINCE I DON'T THINK THIS IS THE
PURVIEW OF THE IACC, USE A MORE
DATA-DRIVEN APPROACH OF
COLLECTING PREFERENCES AMONG
DIFFERENT GROUPS OF PEOPLE SO
THAT WE CAN ENSURE THAT THE MOST
SCIENTIFICALLY ACCURATE BUT ALSO
RESPECTFUL LANGUAGE IS USED TO
CHARACTERIZE THE PERSON, THE
SITUATION, AND OF COURSE THE
CONTEXT.
AND I THINK EVERYONE HERE IS
TOTALLY IN FAVOR OF USING
RESPECTFUL AND ACCURATE LANGUAGE
THAT RESPECTS THE DIVERSITY OF
OPINION.
HOWEVER, THE CURRENT GUIDANCE
THAT'S BEEN PUBLISHED IS PRETTY
DOGMATIC, AND I DON'T THINK THAT
IT ACCURATELY REFLECTS THE
FEELINGS OF THE BROADER
COMMUNITY.
SO I THINK WE NEED A LARGER
CONVERSATION, MAYBE NOT AT THE
IACC MEETING, ABOUT THIS, BUT IN
THE MEANTIME, I THINK WE SHOULD
EMBRACE DIFFERENT PERSPECTIVES
AND DIFFERENT IDEALS ABOUT WHAT
IS ACCEPTABLE TERMINOLOGY.
>>THANK YOU FOR THAT SUMMARY,
ALYCIA.
WE APPRECIATE HEARING FROM YOU
ON THAT.
AND WE HAVE ALISON MARVIN AND
THEN IT SOUNDS LIKE STEVEN HAS
SOME COMMENTS TO SHARE ON BEHALF
OF SOMEBODY THAT HAS SOME
FEEDBACK.
SO ALISON.
>>HI.
THIS IS ALISON MARVIN FROM THE
SOCIAL SECURITY ADMINISTRATION.
I JUST WANTED TO FIRST
ACKNOWLEDGE THE COMMENT FROM
LORI TORE EZ ABOUT THE
DIFFICULTIES SHE'S BEEN HAVING
WITH OUR SOCIAL SECURITY AND I
ALSO WANT TO ADDRESS VIOLA
SANCHEZ'S COMMENTS, THAT SSI HAS
NO HEART AND DONE WITH HELPING
HER, HER GRANDSON AND HE TURNED
18 AND HIS BENEFITS -- HE LOST
HIS BENEFITS.
I JUST WANTED TO JUST MAKE A
REMINDER THAT S SA, SOCIAL
SECURITY ADMINISTRATION,
ADMINISTERS THE LAW.
THAT'S WHAT THE AGENCY DOES.
AND SO IT DOES NOT SET POLICY.
IF YOU WOULD LIKE THE LAW TO BE
CHANGED, PLEASE CONTACT THE
LAWMAKERS, AND YOU MIGHT BE
INTERESTED TO SEE THAT SSA
REGULARLY SUBMITS LEGISLATIVE
PROPOSALS AND IF YOU LOOK AT
SSA.GOV/LEGISLATION UNDER THE
FIRST LINK, LEGISLATIVE
PROPOSALS, YOU'LL SEE WE
REGULARLY TRY TO GET THE LAW
CHANGED SO FOR EXAMPLE, LAST
YEAR'S FY 2021, WE HAD A
PROPOSAL TO IMPROVE YOUTH
INCENTIVES BY DISREGARDING ALL
EARNED INCOME AND ELIMINATING
REPORTING REQUIREMENTS THROUGH
AGE 20, PROVIDING A HIGHER
DISREGARD OF EARNINGS WITH A
GRADUAL PHASE-DOWN FOR SSI
RECIPIENTS BETWEEN AGES 21 AND
25, AND ELIMINATING SCHOOL
ENROLLMENT REPORTING
REQUIREMENTS.
AND WE ALSO REQUESTED BUDGET TO
IMPROVE ACCESS TO VOCATIONAL
REHABILITATION SERVICES.
SO THAT'S WHAT WE HAD IN FY
2021.
FY 2022 IS NOT UP THERE YET, BUT
THE PROPOSAL FROM SSA TO THE
LEGISLATORS WAS MORE GENEROUS
THAN THAT.
SO PLEASE CONTACT YOUR CONGRESS
PEOPLE AND IF YOU CAN GET THE
LAW CHANGED, THAT'S GREAT, BUT
CURRENTLY WE ARE LIMITED TO
ADMINISTERING WHAT THE CURRENT
LEGAL STATUS IS.
THANK YOU.
>>THANK YOU, ALISON.
AND NEXT, STEVEN, DO YOU HAVE
SOME COMMENTS TO SHARE ON BEHALF
OF COMMITTEE MEMBERS?
>>YES, I'M JUST SHARING ANOTHER
COMMENT FROM MORENIKE THAT SAY
THEY AGREE IT'S BEST TO HAVE A
DISCUSSION AROUND LANGUAGE
OFFLINE AND THEY SAID PLEASE
NOTE THAT THE NARRATIVES THAT
WERE REFERENCED IN THE PUBLIC
COMMENTS WERE ABOUT WORDS USED
BY FAMILIES, NOT ABOUT
STATISTICAL ANALYSIS AND
ACCURACY IN SCIENTIFIC
LITERATURE.
>>THANK YOU SO MUCH FOR THAT
CLARIFICATION.
AND WE'RE CLOSE ON TIME, WE'RE
ONLY 3 MINUTES OVER ON THE
SCHEDULE.
SHOULD WE RECONVENE RIGHT AT
2:30 OR DO WE WANT TO GIVE A FEW
EXTRA MINUTES SO PEOPLE CAN HAVE
THEIR 10-MINUTE BREAK?
>>I SAY WE GIVE A FEW EXTRA
MINUTES, LET'S GIVE THEM 10
MINUTES BUT I WANTED TO SAY
SOMETHING IN CLOSING.
I REALLY APPRECIATE THE BACK AND
FORTH.
I APPRECIATE THAT THE TENOR OF
THE CONVERSATION WAS FOR THE
MOST PART RESPECTFUL.
WE TOUCHED ON SOME ISSUES THAT
ARE VERY SENSITIVE, PARTICULARLY
AROUND LANGUAGE, AND IT'S
IMPORTANT FOR US TO AGREE ON
LANGUAGE AS A COMMITTEE FOR THE
REPORT.
SO IF IN REVIEWING THE REPORT
YOU HAVE SPECIFIC SUGGESTIONS
REGARDING OUR USE OF LANGUAGE
THAT YOU FEEL YOU WANT TO CHANGE
IN LIGHT OF THE CONVERSATION WE
HAD TODAY, I ENCOURAGE YOU TO DO
SO.
AND IN FACT OF COURSE AS OTHERS
HAVE ALREADY MENTIONED, THAT
MANY OF THE COMMENTS WILL BE
INCORPORATED IN ONE WAY, SHAPE
OR FORM AS WE FINALIZE THE
STRATEGIC PLAN MOVING FORWARD.
SO WE'LL RECONVENE AT 2:35.
WE'LL BE FIVE MINUTES BEHIND
SCHEDULE SO WE'LL TRY TO MAKE IT
UP AT SOME POINT, BUT I THINK
PEOPLE NEED SOME TIME TO
DECOMPRESS.
THANK YOU, EVERYONE.
>>THANK YOU, EVERYONE.
>>WELCOME BACK TO OUR NEXT
SEGMENT OF THE IACC MEETING
WHERE WE'RE GOING TO TURN OUR
ATTENTION TO AN ISSUE THAT --
YOU KNOW, THAT WE HAVEN'T YET
REALLY SPENT A LOT OF TIME
TALKING ABOUT, WHICH IS AUTISM
IN OLDER ADULTHOOD.
OF COURSE WE HAVE BEEN FOCUSING
MORE AND MORE ON LIFESPAN
ISSUES, BUT ONE ASPECT OF THE
LIFESPAN, OLDER AGE, IS ONE THAT
I THINK IT'S WORTH FOR US TO
CONSIDER AND SO WE'RE GOING TO
DO THAT FOR MUCH OF THE REST OF
THE AFTERNOON.
WE'RE GOING TO START WITH A
LIVED EXPERIENCE PANEL, AND THEN
HEAR ABOUT A BRIEF OVERVIEW OF
RESEARCH ON AUTISM IN OLDER AGE
FROM TWO SCIENTISTS, ONE OF THEM
A MEMBER OF THE IACC.
SO WE'RE GOING TO GO RIGHT AHEAD
AND LAUNCH INTO THIS PANEL.
BY WAY OF INTRODUCTION, WE KNOW
ADULTS HAVE VERY DIFFERENT NEEDS
FROM CHILDREN, CAREGIVERS OF
ADULTS HAVE DIFFERENT NEEDS FROM
CAREGIVERS OF CHILDREN AS WELL.
WHILE THE IACC HAS REALLY DONE
AN EXCELLENT JOB TO FOCUS AND
TRANSITION AGE YOUTH AND
PROGRESS ON ADULTS IN GENERAL
TODAY WE'RE REALLY GOING TO
FOCUS ON OLDER ADULTS, IN THEIR
60s OR LATER.
WE'LL START WITH A PANEL OF FIVE
PEOPLE WHO WILL SHARE THEIR
LIVED EXPERIENCES EITHER AS
AUTISTIC ADULTS OR CAREGIVERS
FOR AUTISTIC ADULTS.
WE'RE VERY HAPPY TO WELCOME BACK
MR. JOHN ROBISON.
MR. ROBISON HAS BEEN A FORMER
MEMBER OF THE IACC AND IS A
NEURODIVERSITY SCHOLAR IN
RESIDENCE AT THE COLLEGE OF
WILLIAM AND MARY AND AN YOU A AC
ADULT.
WE'LL ALSO WELCOME DR. YULANDA
HARRIS, TRAINING PHASE, AND RUTH
JONES, A SIBLING OF AN AUTISTIC
ADULT, HER BROTHER PETER.
OUR FOURTH PANELIST, LISA
MORGAN, FOUNDER AND CO-CHAIR OF
THE AUTISM AND SUICIDE COMMITTEE
OF THE AMERICAN COLLEGE OF
WILLIAM AND MARY, ASSOCIATION OF
SUICIDOLOGY.
OUR FIFTH PANEL, MS. SUE SWEZEY.
THANK YOU ALL FOR JOINING US
TODAY, AND FOR THE WILLINGNESS
TO SHARE YOUR STORIES.
I'M GOING TO ASK JOHN ROBISON TO
LEAD THE PANEL PRESENTATION.
JOHN, OR YOU SHOULD SAY TO LEAD
IT ON.
JOHN, TAKE IT OVER.
>>THERE.
OKAY.
CAN YOU ALL SEE AND HEAR ME NOW?
>>WE CAN INDEED.
>>OKAY.
SO FIRST OF ALL, THOSE OF YOU
WHO KNOW ME FROM MY TIME ON THE
IACC, YOU KNOW I GENERALLY JUST
SPEAK OFF THE CUFF, BUT TODAY, I
HAVE WRITTEN THIS OUT SO THAT I
CAN POST A TRANSCRIPT ONLINE
AFTER THE PRESENTATION IF ANYONE
WISHES TO HAVE FURTHER
DISCUSSION.
I'VE BEEN INVOLVED WITH AUTISM
ADVOCACY FOR 25 YEARS NOW.
THROUGHOUT THAT TIME,
PARTICULARLY DURING MY 15 YEARS
OF GOVERNMENT SERVICE, I MOSTLY
ADVOCATED FOR AUTISTIC PEOPLE
YOUNGER THAN I.
BUT AT AGE 65, I'M HERE TO ASK,
WHAT ABOUT THE OLDER AUTISTIC
POPULATION?
WE HAVE UNANSWERED QUESTIONS AND
WE NEED SUPPORT.
I'D LIKE TO SHARE SOME OF THE
THINGS I'VE EXPERIENCED.
ALL AUTISTIC PEOPLE HAVE
SOME DEGREE OF BLINDNESS TO THE
UNSPOKEN MESSAGES OF OTHERS.
IT'S PART OF THE DIAGNOSTIC
CRITERIA.
WHAT ABOUT BLINDNESS TO
OURSELVES, TO OUR OWN BODIES?
THAT'S LESS STUDIED, BUT EQUALLY
REAL.
I DON'T HAVE A GOOD SENSE, FOR
EXAMPLE, OF WHEN I'M HURT.
I DON'T KNOW WHEN I'M TOO COLD
UNTIL I SEE FROSTBITE.
I DON'T KNOW OFTEN WHEN TO STOP
OR BACK DOWN.
I DON'T KNOW REALLY WHEN TO READ
MY OWN BODY.
PEOPLE SAY THINGS ABOUT SENSING
THINGS IN THEIR BODIES, AND
THOSE WORDS ARE KIND OF ALIEN TO
THEM.
WHEN I WAS 50, THAT DIDN'T SEEM
TO MATTER VERY MUCH.
BUT IF I MISS MEDICATIONS NOW,
BECAUSE I'M NOT MINDFUL OF THAT,
I MAY DIE.
IF I OVERSTRESS MYSELF NOW, I
CAN SUFFER INJURIES THAT I CAN'T
RECOVER FROM.
EVERY YEAR, MISTAKES FOR FAILING
TO RECOGNIZE MY BODY BODY'S CUEW
HIGHER.
ISOLATION IS A RECOGNIZED
PROBLEM FOR AUTISTIC PEOPLE AND
IT'S WORSE IN OLD AGE.
HOW MANY PEOPLE LIKE ME,
THEREFORE, DIE ALONE BECAUSE
THEY'RE OUT OF TOUCH WITH THEIR
BODIES AND THEIR NEEDS, NO ONE
IS TAKING CARE OF THEM, AND THEY
MAKE A MISTAKE?
NO ONE KNOWS.
GROWING OLDER, I FEEL I'VE
GOTTEN MORE AUTISTIC.
THE SAME CAN BE SAID FOR MANY OF
MY AUTISTIC FRIENDS.
WE ARE MORE INCLINED TOWARD
BEING ALONE.
WE ARE MORE ISOLATED.
PERHAPS WE ARE ISOLATING
OURSELVES.
TICKS AND MANNERISMS THAT WERE
LONG LOST SEEM TO BE RESURFACING
IN ME.
I'M LESS MINDFUL OF THE NEED TO
LOOK AT OTHER PEOPLE, AND I
WOULD SAY MY SOCIAL SKILLS HAVE
SLIPPED.
THAT'S CONTRARY TO MY
OBSERVATIONS FROM A DECADE AGO
AND THE FINDINGS OF A VARIETY OF
STUDIES WHICH FOUND THAT PEOPLE
WITH GOOD COGNITIVE ABILITY TEND
TO SEE THEIR DISABILITIES
DIMINISH WITH AGE.
THAT WAS CERTAINLY TRUE FOR ME
UP TO A POINT.
10 YEARS AGO, I OBSERVED HOW
MUCH MORE SUCCESSFUL I WAS IN
SOCIAL SITUATIONS THAN, SAY, AT
AGE 20.
I SAW HOW MUCH BENEFIT I GAINED
FROM LEARNING WHAT MY AUTISTIC
STRENGTHS ARE, AND HOW TO USE
THEM TO BEST ADVANTAGE,
SOMETHING THAT COMES FROM LIFE
EXPERIENCE.
THOSE THINGS ARE STILL TRUE
TODAY.
BUT THEY'RE LESS MEANINGFUL.
I'M NOT AS INCLINED TO BE
SOCIAL.
I'M MORE AT HOME BEING ALONE.
MY AUTISTIC TECHNICAL ABILITIES
BROUGHT ME SUCCESS IN MANY
DOMAINS: ENGINEERING, MUSIC,
PHOTOGRAPHY, WRITING.
BUT I DOUBT I CAN REPLICATE
THOSE SUCCESSES WITH MY CURRENT
COGNITIVE ABILITIES.
I'M NOT AS FLEXIBLE, I'M NOT AS
PATIENT, NOT AS FULL OF NEW
IDEAS.
I FEEL LIKE I'M NOT AS SHARP.
NOW, ALL THOSE SAME FEELINGS
MIGHT WELL BE EXPRESSED BY ANY
AGING PERSON.
WE HEAR OF SENIOR MOMENTS,
SLOWING DOWN.
I EXPERIENCE THAT.
ARE AUTISTIC PEOPLE DIFFERENT IN
THAT REGARD?
I DON'T THINK ANYONE KNOWS.
BUT AS AN AUTISTIC PERSON, I
FIND THOSE CHANGES IN ME, WHICH
HAS HAPPENED SINCE 60,
TROUBLING.
AN OLD FRIEND WITH AUTISM HAD
ANOTHER PART OF THE ANSWER.
HE SAID TO ME, YOU KNOW, WHEN I
HIT 55, IT FELT LIKE MY ADHD
FUELED ENERGY JUST RAN OUT.
I NEVER REALLY THOUGHT OF IT
THAT WAY, BUT THAT'S VERY MUCH
HOW IT FEELS FOR ME.
10 YEARS AGO, WHEN THOSE OF YOU
WHO SERVED WITH ME ON THE
COMMITTEE BEFORE, YOU MAY
REMEMBER THIS, I SERVED ON THIS
COMMITTEE, I SERVED ON NSAR'S
BOARD, I HELD TWO TEACHING
APPOINTMENTS, 25 SPEAKING
ENGAGEMENTS AROUND THE YEAR AND
I STILL HAD TIME TO RUN MY
AUTOMOBILE BUSINESS IN
MASSACHUSETTS.
LOOKING BACK, IT WAS SURELY --
LET'S SEE.
I SEE IT SAYS THE HOST HAS
STOPPED THE VIDEO FEED.
ARE WE STILL CONNECTED?
>>YOU ARE STILL CONNECTED.
>>IT LOOKS GOOD.
>>OKAY.
ALL RIGHT.
SO -- ALL RIGHT.
NOW THE VIDEO STARTED.
ALL RIGHT.
SO ANYWAY, LOOKING BACK, I CAN
SEE THAT THAT WAS A GREAT
EXAMPLE OF ADHD-FUELED ENERGY
EMPOWERING ME.
IT CERTAINLY KEPT ME GOING, AND
IN MY EARLY 60s, IT JUST KIND
OF WENT AWAY.
IN TERMS OF ACCOMPLISHMENT, MY
ABILITY TO ACCOMPLISH THINGS, TO
ME, THAT FEELS LIKE A GREAT
LOSS.
I CAN'T DO ALL THE THINGS I USED
TO TAKE FOR GRANTED BEING ABLE
TO DO.
IF I LOOK AT THE DIVERSE RANGE
OF THINGS I DID IN 2017, FIVE
YEARS AGO, AND THE RANGE OF
THINGS I CAN DO TODAY, IT IS
MUCH MORE LIMITED.
THAT IS NOT BY CHOICE.
I JUST WANT DO IT ANYMORE.
MY ABILITY TO JUGGLE DISPARATE
COGNITIVE TASKS AND GET THEM ALL
DONE WAS CONSIDERABLY BETTER
THAN AVERAGE, AND THAT'S NO
LONGER TRUE.
GIVEN THAT THAT WAS AN AUTISTIC
ABILITY, IT IS NOT A
NEUROTYPICAL ABILITY, IT'S
CERTAINLY FAIR TO ASK, IS THAT A
PENALTY I PAY AS AN AUTISTIC
PERSON GETTING OLDER?
10 YEARS AGO, I WAS CONFIDENT
AND FULL OF ENERGY.
NOW, I AM ANXIOUS, WORRIED, AND
CONSTANTLY TIRED.
THERE'S NO QUESTION MY ANXIETY
HAS INCREASED THESE PAST FEW
YEARS, AND IS THAT AUTISM, IS IT
NATURAL AGING, IS IT EVEN A SIDE
EFFECT OF COVID?
THERE HAVE BEEN MANY ARTICLES
ABOUT THAT.
I DON'T KNOW.
BUT BEFORE COVID, I KNEW A
NUMBER OF OLDER YOU A TIS TICS
WHO BECAME MORE ANXIOUS AS THEY
AGED.
AT THE NSAR CONFERENCES WHERE I
SAW OLDER AUTISTIC FOLKS FROM
AROUND THE WORLD, I HAD MANY
FRIENDS THAT I SAW BECOME
PARALYZED BY ANXIETY AS THEY GOT
OLDER.
I FEEL THAT IS A SERIOUS AND
OVERLOOKED PROBLEM IN AUTISTIC
PEOPLE WITH OTHERWISE GOOD
COGNITIVE FUNCTION, AND I FEEL
THAT IT WORSENS WITH AGE, IF
THOSE EXAMPLES ARE A GUIDE.
AND I WILL ALSO SAY THAT FOR
PEOPLE WHO SAY, WELL, JOHN, YOUR
LIFE EXPERIENCE IS JUST YOU AND
ALL AUTISTIC PEOPLE ARE
DIFFERENT.
I'VE HEARD ALL THAT BEFORE, AND
AS YOU KNOW, I'VE PROBABLY
TALKED TO MORE AUTISTIC PEOPLE
IN MY LIFE THAN MOST CLINICIANS
HAVE AT THIS POINT, AND I HAVE
CERTAINLY HAD THOUSANDS AND
THOUSANDS OF PEOPLE WRITE ME
OVER HAVING SIMILAR EXPERIENCES
AS I'VE CHARACTERIZED IN MY
BOOKS AND WRITING.
AND I THINK THAT THESE KINDS OF
THINGS MAY BE MUCH MORE COMMON
THAN WE KNOW, AND THEY ARE UNDER
THE RADAR BECAUSE THERE AREN'T
THAT MANY AUTISTIC ADULTS OF MY
AGE SPEAKING OUT.
SO ANYWAY, I'VE JUST ENUMERATED
SOME WAYS IN WHICH IT FEELS LIKE
I'M DIMINISHED WITH AGE.
LUCKILY, I'M SURROUNDED BY
PEOPLE WHO CARE ABOUT ME AND
LOOK OUT FOR ME.
WITHOUT THAT, IN ISOLATION, I
COULD WELL IMAGINE THAT I WOULD
COME TO THE RATIONAL DECISION
THAT SUICIDE IS MY BEST OPTION,
AS THERE'S NOTHING BUT PAIN TO
LOOK FORWARD TO.
AS SOMEONE WHO'S LIVED WITH
DEPRESSION AND ANXIETY MY LIFE
AND BEEN IN THAT PLACE MORE THAN
ONCE, I REALLY URGE YOU TO TAKE
THAT SERIOUSLY.
IF A PERSON LIKE ME SEEMINGLY
WELL CONNECTED, ARTICULATE AND
CAPABLE CAN FEEL THAT THAT'S A
REASONABLE OPTION, HOW MANY OF
MY FELLOW AUTISTICS WHO DON'T
HAVE SOME OF THE ADVANTAGES THAT
I'VE HAD CHOOSE THAT WAY OUT?
IN MY LAST TIME ON NSAR'S BOARD,
WE WORKED ON A POLICY BRIEF ON
SUICIDE, AND I THINK THAT'S A
BIG CONCERN.
THE PROBLEM TO SOLVE IS A
SOCIETAL ONE, NOT AN INDIVIDUAL
ISSUE.
IN EARLIER IACC MEETING, WE
DISCUSSED THE EMERGING
REALIZATION THAT INTELLECTUALLY
DISABLED AND NON-SPEAKING
AUTISTIC PEOPLE MAY HAVE AS MUCH
OF SO YOU SIGH DAL IDEATION AS
NON-INTELLECTUALLY DISABLED YOU
A TIS TICS.
IT'S A LIFE-LONG RISK FOR US NO
MATTER WHERE WE FALL ON THE
SPECTRUM.
A RECENT LABOR DEPARTMENT STUDY
FOUND 7% OF AMERICANS WERE SELF
EMPLOYED.
A DARTMOUTH STUDY OF DESIRE SAID
70% WANT TO BE.
IT'S A LITTLE MISLEADING.
IN THE CASE OF MINE AND MANY YOU
A TIS TICS, I'VE BEEN SELF
EMPLOYED MOST OF MY LIFE BECAUSE
I DIDN'T HAVE A CHOICE.
I DIDN'T HAVE THE SOCIAL SKILLS
TO NAVIGATE WORK LIFE AND
ORGANIZATIONS.
A SIDE OF LIFE STATISTICS DON'T
CAPTURE BUT WE CAN SEE IT
ANOTHER WAY.
THE PREVALENCE OF AUTISM AND
NEUROMENTAL DISORDERS AMONG THE
HOMELESS AND INCARCERATED IS
WELL ABOVE THE PREVALENCE IN THE
GENERAL POPULATION.
OUTSIDE OF THAT, BRUGA AND OTHER
FOLLOW-ON STUDIES SHOWED THAT
OLDER YOU A TIS TICS AS A GROUP
END UP WORSE OFF THAN THE
GENERAL POPULATION BY VARIOUS
MEASURES OF ATTAINMENT.
GIVEN THE CONTRIBUTIONS WE MAKE
TO THE WORLD, I THINK THAT'S
REALLY WRONG.
AT 55, I FELT LIKE I COULD KEEP
WORKING FOREVER.
AT 65, I FEEL LIKE I HAVE NO
CHOICE BUT TO WORK FOREVER.
THOSE ARE REALLY DIFFERENT
PERSPECTIVES.
I AND MOST OLDER AUTISTICS HAVE
ABC ROUTELY NO ACADEMIC,
GOVERNMENT OR -- RETIREMENT
PLAN.
I'M NOT DISCOUNTING SOCIAL
SECURITY AND DISABILITY, I'M
TALKING ABOUT RETIREMENT FUNDING
THAT PROVIDES A DECENT STANDARD
OF LIVING IN RETIREMENT AS MOST
WORKING PROFESSIONALS IN AMERICA
CAN EXPECT.
THE ONLY RETIREMENT I HAVE IS
WHAT I MAKE BY INVESTING AND
BUILDING ASSETS.
IT EASY FOR ANY OF YOU TO SAY,
WELL, THAT'S JUST THE SAME AS
ME, BUT IT'S NOT.
THOSE OF YOU WITH GOVERNMENT
TENURED ACADEMIC OR CORPORATE
JOBS GET YOUR RETIREMENT
SECURITY BY BEING PART OF A
SOCIAL SYSTEM WHERE YOU'RE
EMPLOYED.
AS LONG AS YOU REMAIN IN THAT
SYSTEM FOR THE DURATION, IT WILL
TAKE CARE OF YOU.
I KNOW OF NO STATISTICS ON THIS,
BUT I SUSPECT THE NUMBER OF
AUTISTIC ADULTS WHO SUCCESSFULLY
RUN THAT SOCIAL SKILLS GAUNTLET
FOR THE 30-SOME YEARS TO QUALIFY
FOR PENSION IS VERY SMALL.
REFLECTING ON THAT, THOUGH, THE
ISSUE IS MORE THAN MONEY.
NOW DON'T GET ME WRONG, MONEY
FOR RETIREMENT SECURITY IS
IMPORTANT.
THAT'S SOMETHING THAT I COULDN'T
SEE WHEN I WAS YOUNGER.
THE SOCIAL NETWORK AFFORDED BY
EMPLOYMENT IS EVEN MORE
IMPORTANT.
WORK IS THE PLACE WHERE SO MANY
PEOPLE MAKE FRIENDS, FIND LIFE
PARTNERS, DISCOVER NEW INTERESTS
AND JOIN A SOCIAL WEB THAT
NURTURES AND PROTECTS THEM IN
TIMES OF STRESS.
IN THAT RESPECT, THE WORKPLACE
IS MORE THAN JUST A JOB.
YEARS AGO, WHEN I TRIED TO FIT
IN TO A LARGE COMPANY WITHOUT
SUCCESS, I KIND OF SNEERED AT
PEOPLE STANDING AROUND THE
PHOTOCOPIERS GOSSIPPING AND I
THOUGHT WHY AREN'T THEY WORKING,
THEY'RE WASTING TIME.
BUT I NOW SEE THAT GOSSIP
ACTUALLY NURTURED THOSE PEOPLE
AND WAS A VALUABLE SOCIAL
SUPPORT WHICH I NEVER RECEIVED
BECAUSE OF MY AUTISTIC
DISCONNECTION.
IT'S FAIR TO SAY, DID THEY
EXCLUDE ME OR DID I EXCLUDE
MYSELF?
I PROBABLY DID EXCLUDE MYSELF.
BUT IT DOESN'T CHANGE THE FACT
THAT IT'S A VERY REAL PROBLEM
THAT WORSENS WITH AGE.
TO HELP AUTISTIC PEOPLE FIT IN
TO WORKPLACES AND BECOME MORE
SOCIALLY CONNECTED, I WOULD
SUGGEST THIS THING THAT I THINK
EVERY AUTISTIC PERSON LISTENING
WILL AGREE WITH: FIX THE
UGLINESS IN OUR SCHOOLS.
THAT'S A TALL ORDER, BUT THAT
UGLINESS NOT ONLY LEAVES
MILLIONS LIKE ME WITH PSYCHIC
INJURIES AND THE RESULTANT
DISABILITIES THAT LAST A
LIFETIME.
IT'S THE BREEDING GROUND FOR
TODAY'S PROP OF SCHOOL SHOOTERS
AND OTHERS WHO POSE A FAR
GREATER THREAT TO SOCIETY THAN
PEOPLE LIKE ME.
OUR MISTREATMENT AS SCHOOL
CHILDREN THROWS UP LIFELONG
BARRIERS TO OUR SUCCESS AT WORK
AND OUR ASSOCIATED SOCIAL
SUCCESS.
THAT STIGMA OF CHILDHOOD
REJECTION FOLLOWS US INTO
ADULTHOOD, WHERE IT JOINS WITH
OUR AUTISTIC SOCIAL DISABILITIES
TO CAUSE ENDLESS MISSTEPS IN OUR
EFFORTS FOR SOCIAL ENGAGEMENT,
AND I SUSPECT THAT WH WHEN YOU T
TO MY AGE, A LIFETIME OF THOSE
MISSTEPS COMBINED WITH OUR
INHERENT AUTISTIC SOCIAL
DISABILITY REALLY MAKES IT
HARDER AND HARDER AND HARDER
UNTIL WE GIVE UP ON CONNECTION.
AND THAT MAY BE WHY SOME OF US
ARE MORE ISOLATED AT 65 THAN AT
55.
SOME OF US WITHDRAW, SOME OF US
TURN TO DRINK.
SOME DO CONNECT AND, YOU KNOW,
WE'RE LUCKY, BUT WE DO.
MANY OF US SUCCEED AT SOME LEVEL
BUT WE LIVE WITH MORE SADNESS,
ANXIETY AND ISOLATION THAN
ANYONE WOULD WANT.
THAT IS TRULY SUFFERING.
AND I DON'T KNOW OF ANY AUTISTIC
PERSON WHO WANTS THAT.
THERE'S NOTHING TO CELEBRATE
ABOUT THAT SIDE OF AUTISM.
THERE'S A WHOLE GENERATION OF
40-PLUS AUTISTIC PEOPLE WHO GREW
UP WITH NO DIAGNOSIS.
MANY OF US ARE JUST GOING ALONG,
AWARE THAT WE'RE DIFFERENT AND
FEELING THAT WE ARE LESS, WITH
NO UNDERSTANDING OF NEUROLOGICAL
DIFFERENCE, HOW WOULD WE SEE
THINGS DIFFERENTLY?
THAT'S HOW I LIVED MOST OF MY
LIFE.
HAVING TALKED WITH MANY SUCH
UNDIAGNOSED PEOPLE, I BELIEVE
THE LAST THING THEY WANT IS FOR
SOMEONE TO SAY, HEY, YOU'RE
ACTING AUTISTIC.
YOU MUST HAVE UNDIAGNOSED
AUTISM.
WHEN PRESENTED WITH A PARADIGM
SHIFT LIKE THAT, THEY REJECT IT
BECAUSE OF AUTISM'S STIGMA.
THAT WAS CERTAINLY MY FIRST
REACTION.
IN MY CASE, THE THERAPIST HANDED
ME THE OLD BOOK "ASPERGER'S
SYNDROME" AND HE SAID REALLY,
IT'S NOT WHAT YOU THINK, HE
HIGHLIGHTED PASSAGES THAT
MATCHED ME.
BUT EVEN FOR ME, YOU KNOW ME AS
A CHAMPION OF AUTISTIC PEOPLE
AND AUTISTIC ABILITIES, THAT WAS
A VERY HARD THING FOR ME TO
OVERCOME.
I SAW IT AS A DISEASE WITH NO
CURE, THE REASON I WAS A FAILURE
AND I WOULD NEVER GET BETTER AND
IT WAS CRUSHING AT FIRST.
THAT'S NOT HOW DISCOVERY HAS TO
BE FOR US.
AND THAT'S WHERE NEURODIVERSITY
COMES IN, ESPECIALLY FOR US
OLDER AUTISTICS.
IF WE'RE PRESENTED WITH A
NEURODIVERSITY PARADIGM INSTEAD
OF A MEDICAL DIAGNOSIS, THERE'S
A CHANCE FOR A FAR BETTER
OUTCOME TO THOSE CONVERSATIONS.
HEARING THAT WE HAVE A DIFFERENT
KIND OF BRAIN IS FUNDAMENTALLY
DIFFERENT THAN HEARING THAT WE
ARE DISORDERED.
WE ARE STRONGER IN SOME WAYS AND
WEAKER IN OTHERS.
WE CAN START A CONVERSATION
ABOUT BALANCE, NOT DEFICITS.
WE CAN START WITH DIVERSITY AND
NOT DISORDER.
I REALLY SEE THIS HAPPEN IN SOME
WORKPLACES WITH MANY
NEURODIVERGENT PEOPLE, AND I CAN
GIVE YOU ONE EXAMPLE.
SOME OF YOU KNOW THAT I'M THE
NEURODIVERSITY ADVISOR AT THE
LAWRENCE LIVERMORE NATIONAL LABS
UNDER THE DEPARTMENT OF ENERGY.
THE LAB IS ONE OF THE WORLD'S
PREMIER SCIENTIFIC INSTITUTIONS.
ENGINEERS AND SCIENTISTS WORK ON
SOME OF THE MOST DIFFICULT
SCIENTIFIC AND TECHNICAL
CHALLENGES KNOWN TO US.
SUCCESS THERE OFTEN REQUIRES
EXTRAORDINARY COGNITIVE GIFTS,
AND OFTEN THOSE GIFTS ARE
ACCOMPANIED BY DIMINISHED
ABILITIES IN OTHER DOMAINS.
SO MANY BRILLIANT SCIENTISTS AND
ENGINEERS HAVE TERRIBLE TROUBLE
WITH HUMAN RELATIONSHIPS,
WHETHER THAT'S RELATING TO THE
FINANCE OR HUMAN RESOURCES
DEPARTMENT AT THE LAB OR
RELATING TO THEIR FAMILIES OR
FRIENDS OUTSIDE OF WORK.
AS AN AUTISTIC PERSON, I SEE
CLEARLY THAT NEURODIVERSITY IS
AT THE ROOT OF THAT.
BUT I WOULDN'T SAY IT'S AUTISM.
IF I WERE TO SAY TO SOMEBODY
LIKE THAT, SOMEBODY MY AGE, YOU
ACT AUTISTIC.
A SCIENTIST AT THE LAB WOULD
REJECT THAT BECAUSE AUTISM IS A
MEDICAL TERM FOR DISABILITY.
ANY CONVERSATION ABOUT AUTISM
STARTS BY DEFICIT.
DEFICITS IN FAILURE AND MOST
PEOPLE WORKING AT A PLACE LIKE
LIVERMORE WOULD NOT BE
CHARACTERIZED AS FAILURES, NO
MATTER HOW THEY SEE THEMSELVES
INSIDE.
AND EVEN IF THEY DO SEE
THEMSELVES INSIDE AS HAVING
AUTISTIC TRAITS, THE NEXT THING,
AND WE'VE DISCUSSED THIS IN IACC
MEETINGS IN YEARS PAST, IS THAT
IF YOU'RE AUTISTIC, YOU AREN'T
QUALIFIED FOR MILITARY SERVICE.
YOU MIGHT BE A SECURITY RISK.
YOU'RE A HIGHER INSURANCE RISK.
THERE ARE MANY OTHER GOOD
REASONS TO REJECT THAT.
WERE IF ON THE OTHER HAND, WE
EXPLAIN HOW THEIR NEUROTYPE THAT
MAKES THEM SO SUCCESSFUL HAS
HAMPERED THEM IN SOCIAL
SETTINGS, WE HAVE THE BASIS OF A
CONVERSATION THAT LEADS TO
UNDERSTANDING AND MAKING THEIR
LIVES BETTER.
I HAVE SEEN AT THE LAB HOW
ENLIGHTENMENT HAS BEEN AS
TRANSFORMATIONAL FOR SOME OF
THEM AS IT ULTIMATELY WAS FOR
ME.
AND YOU SAW HOW IT HAS WORKED
FOR ME OVER THE YEARS.
SO WHO MIGHT INITIATE THESE
CONVERSATIONS?
I THINK NEURODIVERSITY AT WORK
PROGRAMS ARE GOING TO MOVE IN
THAT DIRECTION.
ONE THING THAT'S IMPORTANT THAT
LIVERMORE IS DOING IN THEIR
NEURODIVERSITY IS DIRECTING
THEIR FOCUS ON TO NEURODIVERGENT
PEOPLE WHO ALREADY WORK AT THE
LAB.
AND I THINK THAT'S WHERE
COMPANIES WILL GET REAL BENEFIT.
MAKING A FEW THOUSAND EXISTING
WORKERS HAPPIER AND MORE
PRODUCTIVE THROUGH UNDERSTANDING
THEIR DIFFERENT BRAINS.
AND YOU REALLY WIN BIG, MUCH
MORE SO THAN A SMALL NUMBER OF
NEURODIVERSITY AT WORK INTERNS,
WHICH IS THE CURRENT PREVAILING
MODEL, WHICH I FEEL IS FAILING.
COMPANIES THAT BELIEVE IN THIS
SHOULD SEE THAT THE PEOPLE THEY
CAN HELP ARE RIGHT THERE ON THE
JOB, NOT ON THE STREET WAITING
TO BE RECRUITED.
OUTSIDE THE WORKPLACE, ONCE
YOU'RE DEALING WITH PEOPLE
WHO'VE AGED OUT OF PUBLIC SCHOOL
SUPPORT, I REALLY THINK THAT THE
MEDICAL AND COUNSELING
PROFESSIONALS NEED TRAINING IN
UNDERSTANDING AND PRESENTING THE
NEURODIVERSITY PARADIGM BECAUSE
ONCE THE ERA OF FREE SUPPORT IN
PUBLIC SCHOOL ENDS, THERE'S A
TENDENCY TO REJECT SOMETHING WE
DON'T WANT.
AND AUTISM IS NOT A THING THAT
OLDER PEOPLE WANT TO EMBRACE
WITH ENTHUSIASM, BUT
NEURODIVERSITY DIFFERENCE AND
EMPOWERMENT ARE.
I BELIEVE THAT'S A VERY, VERY
IMPORTANT THING WE CAN DO TO
SUPPORT OLDER ADULTS, AND IT
WILL HELP EVERYONE.
A FINAL THOUGHT ON
NEURODIVERSITY IN THIS SPACE.
ALL OF YOU KNOW ME AS AN
AUTISTIC PERSON.
AND YOU KNOW ME AS AN EXPERT ON
AUTISM.
I'VE SERVED ON STEERING
COMMITTEES TO DEFINE AUTISM AND
SO ON.
BUT MY MULTITASKING, THAT'S
ALWAYS BEEN ADHD.
MY READING DIFFICULTIES, WHICH
YOU DON'T SEE BUT I HAVE, HAVE
ALWAYS BEEN DYSLEXIA, JUST LIKE
MY SON, WHO WAS DIAGNOSED WITH
DYSLEXIA.
MY TREMORS SOMETIMES THAT YOU
SEE, MAYBE THEY'RE HINTS AT
EPILEPSY, MAYBE IT'S A LITTLE
BIT OF TOURETTES.
AND SAYING THAT I HAVE A NUMBER
OF CO-MORBID CONDITIONS, IT
VERGES ON -- IT HAS NO MEANING.
BUT SAYING I'M NEURODIVERGENT,
THAT'S A THING THAT I CAN
EMBRACE.
AND IN SAYING THAT TO YOU, I
WOULD SAY THAT THERE'S MILLIONS
OF PEOPLE WHO WOULD SEE IT THE
SAME WAY AS ME.
HAVING SAID THAT, I RESPECT THAT
THERE ARE PEOPLE WHO CAME BEFORE
US IN MY TIME ON IACC, AND THEY
SAID I HATE MY AUTISM, I HATE
IT, AND I DON'T -- I'M NOT
NEURODIVERGENT, I'M AUTISTIC.
I RESPECT THAT PEOPLE CAN HAVE
OTHER OPINIONS THAN ME.
BUT I WOULD SUGGEST TO YOU WITH
ALL DUE RESPECT, THAT THE
NEURODIVERSITY PARADIGM IS VERY
POWERFUL, AND A GREAT MANY
PEOPLE FEEL AS I DO BASED ON MY
EXPERIENCE TALKING TO PEOPLE.
BEFORE I ASK FOR QUESTIONS OR
COMMENTS, I'D LIKE TO OFFER
THESE THOUGHTS ALSO.
I SERVED TWO TERMS ON THIS
COMMITTEE, AND A NUMBER OF YEARS
ON GOVERNMENT COMMITTEES BEFORE
THAT, AND I'M PROUD OF MOST OF
WHAT I SAID OR DID.
THERE'S ONE THING THAT I REGRET.
I REGRET THE TIMES THAT I
CRITICIZED OR MOCKED PEOPLE WHO
ATTACKED ME OR SAID THINGS I
THOUGHT WERE RIDICULOUS.
AND TO THOSE OF YOU I HURT WITH
MY WORDS AT THOSE TIMES, I
APOLOGIZE.
SERVING ON IACC COMES WITH A
DUTY TO ADVOCATE FOR ALL
AUTISTIC PEOPLE, NO MATTER WHO
THEY ARE, HOW THEY FEEL ABOUT
AUTISM, THEMSELVES, YOU AS IACC
MEMBERS OR THE COMMITTEE.
YOUR JOB IN REPRESENTING THE
AUTISM COMMUNITY BEFORE THE
FEDERAL GOVERNMENT IS TO DO YOUR
BEST FOR ALL AUTISTICS WITHOUT
FAVORITISM.
EVERY PERSON WHO COMES BEFORE
THE COMMITTEE WENT TO TROUBLE TO
DO SO.
AND THEY DESERVE OUR ATTENTION
AND RESPECT.
IN THE LAST YEARS OF MY SERVICE
ON THE IACC, I REALLY CAME TO
BELIEVE THOSE WORDS APPLY MOST
OF ALL TO THE PEOPLE WHO OPPOSE
US, WHO DISLIKE US, WHO HOLD
VIEWS WE THINK ARE WRONG OR EVEN
DANGEROUS.
WE ARE THEIR REPRESENTATIVES
TOO, BEFORE THE GOVERNMENT.
AND I THINK THAT'S REALLY A
SACRED DUTY THAT WE HAVE, TO
REPRESENT EVERYONE FAIRLY AND AT
THE SAME TIME, TO BE GUIDED BY
THE BEST OF TODAY'S SCIENTIFIC
KNOWLEDGE.
IT'S UP TO YOU ON TODAY'S IACC
TO CARRY THIS ADVOCACY FORWARD
AND URGE YOU TO DO SO WITH
KINDNESS, RESPECT AND WISDOM.
THANK YOU.
>>I THINK WE WILL HOLD
QUESTIONS TO THE END OF THE
SESSION WITH VOICES OF
EXPERIENCE.
SO WE'LL MOVE ON TO OUR NEXT
SPEAKER, WHO IS YULANDA HARRIS.
DR. HARRIS.
>>GOOD MORNING.
CAN EVERYONE HEAR ME OKAY?
>>YES, WE CAN.
>>OKAY, THANK YOU.
FIRST OF ALL, I JUST WANT TO
ACKNOWLEDGE DR. DANIELS FOR
INVITING ME TO BE A PART OF THIS
PANEL.
AS WELL AS CAMILLE PROCTOR,
FOUNDER AND DIRECTOR OF "THE
COLOR OF AUTISM" THAT REFERRED
ME TO DR. DANIELS.
SO JUST TO KIND OF SHARE A
LITTLE BIT ABOUT ME AND MY
PERSONAL EXPERIENCE AS AN OLDER
ADULT, MY COMPANY,
TRAININGPHASE, WHAT I DO IS, I
WORK WITH BUSINESSES TO CREATE A
MORE NEURODIVERSE FRIENDLY
ENVIRONMENT.
SO THAT'S JUST A LITTLE -- JUST
A QUICK OVERVIEW OF WHAT I DO
ALONG WITH WORKING IN A
NON-PROFIT SECTOR AS A CHIEF
ORGANIZATIONAL DEVELOPMENT
OFFICER WHERE I DO LEADERSHIP,
PROFESSIONAL DEVELOPMENT,
COACHING WITH THE STAFF.
SO JUST TO KIND OF DESCRIBE A
LITTLE BIT ABOUT MY DIAGNOSIS
COMPARED TO WHAT I EXPERIENCED
EARLIER IN LIFE, I WAS 58 YEARS
OLD WHEN I WAS FORMERLY MADE
AWARE OF MY AUTISM BY RECEIVING
A DIAGNOSIS OF ASPERGER'S
SYNDROME, WHICH IS A FORM OF,
YOU KNOW, BEING ON THE AUTISM
SPECTRUM DISORDER.
AND THE WAY MY THERAPIST HAD
DESCRIBED TO ME OR THE
PSYCHIATRIST HAD DESCRIBED TO
ME, HE SAID THAT, YOU KNOW, YEU
LAN DA,WHYYYYULANDA, YOU HAVE M,
HE WENT INTO DETAIL EXPLAINING
WHAT AUTISM IS.
DR. DERWIN GUTIERREZ FROM EASTER
SEALS OF MICHIGAN, WHICH IS
WHERE I SPENT A LOT OF MY TIME
GOING TO THERAPY WITH HIM
BECAUSE GROWING UP DIDN'T REALLY
KNOW WHAT WAS GOING ON, EVEN IN
MY EARLY ADULTHOOD AS WELL.
SO THE WAY IT WAS EXPLAINED, AND
THIS IS WHERE I REALLY WANT TO
JUST KIND OF FOLLOW WITH WHAT
ELLIOT WAS SAYING IN THE OTHER
SEGMENT, THE EARLIER SEGMENT
ABOUT HIGH FUNCTIONING AUTISM,
AND KNOWING THAT IT ISN'T --
BASED ON RESEARCH THAT I HAVE
DONE, IT'S NOT AN OFFICIAL
MEDICAL TERM OR A DIAGNOSIS,
IT'S REALLY -- AND THAT'S WHY
SOMEONE LIKE MYSELF DO NOT LIKE
USING THAT TERM, HIGH
FUNCTIONING AUTISM, BECAUSE IT'S
AN INFORMAL TERM USED IN A
NEUROTYPICAL SETTING PEOPLE WILL
USE WHEN THEY TALK ABOUT
INDIVIDUALS LIKE MYSELF ON THE
AUTISM SPECTRUM DISORDER WHO CAN
SPEAK, READ, WRITE, HANDLE
BASIC -- WE'RE TALKING BASIC
LIFE SKILLS WHEN WE TALK ABOUT
EATING, GETTING DRESSED, THINGS
LIKE THAT, WE LIVE
INDEPENDENTLY.
PEOPLE ARE HIGH FUNCTIONING,
WHICH IS THAT TERM AGAIN, WE
STILL HAVE A VERY HARD TIME AND
CHALLENGING TIME WHEN IT COMES
TO SOCIAL INTERACTION AS WELL AS
COMMUNICATION.
AND I'M NOW GOING TO SPEAK
BASICALLY ON BEHALF OF MYSELF
WHERE I NOW HAVE LEARNED TO
ADVOCATE FOR MYSELF IN ADDITION
TO OTHERS WITH ASD, SO WHEN IT
COMES TO ANY TYPE OF SOCIAL
INTERACTION, I DON'T NECESSARILY
READ OR PICK UP ON THOSE SOCIAL
CUES, AND I HAVE FOUND, YOU
KNOW, ESPECIALLY AS I HAVE
BECOME OLDER, AND I KNOW THIS IS
THE PART ABOUT BEING AN OLDER
ADULT THIS SEGMENT HERE, WHICH
I'M REALLY GOING TO TOUCH A LOT
ON OVER THE YEARS, AND BY ME NOW
BEING 62 YEARS OLD, AND TO BE
CONSIDERED AS AN OLDER ADULT, I
STILL STRUGGLE WITH THAT.
YOU KNOW?
IN TERMS OF AGING, AND THE
ISSUES AND THE CHALLENGES THAT I
SEEM TO HAVE FACED AT THIS STAGE
IN MY LIFE IS THAT, ONE, WITH
THE UNDERSTANDING OF KNOWING
THAT AUTISM IS A LIFELONG
NEUROLOGICAL AND DEVELOPMENTAL
CONDITION, YOU'RE GOING TO FIND
AND WE'RE FINDING THAT THERE ARE
AN INCREASING NUMBER OF OLDER
ADULTS WHO ARE NOW BEING
FORMALLY DIAGNOSED LATER IN
LIFE.
SO GROWING UP, I DID EXHIBIT,
AND EVEN NOW, WHICH IS MORE
PREVALENT, WHERE I EXHIBIT A LOT
OF THE EMOTIONAL TRAITS WHERE I
WAS MISTAKEN, YOU KNOW, WHEN I
WAS MUCH YOUNGER AS BEING SHY,
YOU KNOW, BEING TOO SENSITIVE,
OR RIGHT NOW IN TERMS OF DEALING
WITH PAST TRAUMA, SO WHAT I
WOULD HAVE TO DO IN TERMS OF
MASKING, ANY TYPE OF AUTISM
SYMPTOMS IN ORDER TO REALLY
APPEAR NEUROTYPICAL OR JUST TO
FIT IN.
AND BY DOING THAT, IT BECAME
INCREASINGLY STR STRESSFUL.
AND THE STRESS, AS YOU ALL KNOW,
WHEN WE GO THROUGH ANY TYPE OF
STRESSFUL SITUATIONS WHICH IS
WHAT DR. DURHAM HAD REALLY
COACHED ME ON THROUGH THE
PROCESS IN TERMS OF STAYING AWAY
OR TO NOT BE IN A LOT OF
STRESSFUL SITUATIONS, THAT HAS
REALLY TAKEN A TOLL IN TERMS OF
MENTALLY AND PHYSICALLY, WHEN WE
TALK ABOUT HEALTH PROBLEMS OVER
TIME IN OLDER ADULTS.
SO THAT KIND OF EXPLAINS -- NOT
KIND OF, BUT THAT REALLY
EXPLAINS AS I THINK BACK BECAUSE
I PROCESSED THAT DURING THAT
TIME, AS I WAS GOING THROUGH MY
STAGES IN LIFE, I GUESS YOU CAN
SAY THAT I NOW UNDERSTAND WHY I
WAS MISDIAGNOSED AS BEING
BIPOLAR, MISDIAGNOSED AS HAVING
BORDERLINE PERSONALITY DISORDER
ALONG WITH OTHER MENTAL HEALTH
ISSUES WE TALK ABOUT SEVERE
DEPRESSION AND SO ON.
AND SO THE CHALLENGE IS, I
THINK, NOW THAT I AM REALLY
FACING AS AN OLDER ADULT IS,
WHEN IT COMES TO COMMUNICATION.
THE COMMUNITYCATION LEVEL OF
BEING TOO DIRECT, BEING VERY
LITERAL AND SOMETIMES BEING
MISUNDERSTOOD.
AND I AM VERY MUCH AWARE OF
THAT.
IS IT EASY TO CONTROL?
AT TIMES, YES, IT MANAGEABLE.
AND I DON'T WANT TO SAY CONTROL
BUT ABLE TO MANAGE IT.
KNOWING THAT THIS IS A LIFELONG
TRAIT THAT I HAVE.
SO I THINK THE ABILITY TO MANAGE
IT NOW, NOT SO MUCH MASK THE
BEHAVIOR, BECAUSE AS I GO
THROUGH AND I MASK OR THE TERM
THAT'S BEING USED THAT I HEAR
NOW OFTEN, ESPECIALLY AT WORK IS
I THINK WE SAY CODE SWITCHING.
AND CODE SWITCHING FOR A
NEUROTYPICAL, ESPECIALLY AS AN
AFRICAN AMERICAN WOMAN OR PERSON
OF COLOR, WE HAVE TO COLD
SWITCH, WELL, YES, WE CAN DO
THAT IN THE WORKPLACE.
IT'S EASY FOR A NEUROTYPICAL
INDIVIDUAL TO CODE SWITCH AND
THEN GO BACK TO, I GUESS WE CAN
SAY BEING OURSELVES.
BUT FOR SOMEONE, ESPECIALLY AS
AN AUTISTIC ADULT, IT IS
PAINFUL, AND THIS IS SOMETHING
THAT I HAVE TRIED TO EXPRESS
OVER AND OVER WHERE I SIMPLY,
GROWING UP AND REALIZING NOW
DURING MY CHILDHOOD INTO MY
EARLY ADULTHOOD EVEN NOW, IT'S
VERY, VERY INTENSE AND IT'S
VERY -- IT CAN BE VERY PAINFUL
AT TIMES TO -- WHEN IT'S TIME TO
RIP OFF THAT MASK, YOU KNOW, IN
TERMS OF CAMOUFLAGING.
SO THOSE ARE THE CHALLENGES THAT
I HAVE AS AN OLDER ADULT.
OTHER CHALLENGES THAT I HAVE,
WHEN IT COMES TO READING PEOPLE,
NOT BEING ABLE TO DETERMINE IF
THIS PERSON IS BEING SARCASTIC
OR IF THIS PERSON IS JUST
KIDDING, WHERE THEY HAVE TO TELL
ME, OH, HEY, I WAS JUST KIDDING,
THINGS LIKE THAT, AND I THINK
ONE OF THE BIGGEST CHALLENGES
WHEN IT COMES TO OLDER ADULTS
AS, YOU KNOW, AS FAMILY MEMBERS,
FRIENDS, CO-WORKERS, COLLEAGUES,
PARTNERS, TO REALLY BE AWARE
WHEN IT COMES TO OUR CHALLENGES
OF BEING ABLE TO DISCERN TRUST,
BEING ABLE TO ESTABLISH THOSE
BOUNDARIES AND SAFETY OF ANY
TYPE OF RELATIONSHIPS.
SO ONE OF THE THINGS WHEN IT
COMES TO BEING OLDER, AND AT MY
AGE, AND REALIZING NOW, BEING
MORE AWARE OF THAT, I'M NOT
GETTING ANY YOUNG YOUNGER, I AM
GETTING OLDER, IS THAT WE HAVE
TO BE VERY MUCH AWARE OF OLDER
ADULTS WHO ARE BEING LESS
MOBILE.
WE'RE TALKING THE SHRINKING OF
THE SOCIAL CIRCLE THAT WE HAVE,
AND THE IMPACT ON THE OLDER
PERSON'S SOCIAL COMMUNICATION
SKILLS, WHICH, AGAIN, COULD MASK
ANY UNDERLINING AUTISM TRAITS.
WE ARE MORE SUSCEPTIBLE WHEN IT
COMES TO CERTAIN MENTAL HEALTH
PROBLEMS, PARTICULARLY WHEN WE
TALK ABOUT LONELINESS AND
DEPRESSION, AND THIS CAN HAVE A
HUGE, HUGE IMPACT ON OUR
SELF-ESTEEM AND OUR BEHAVIOR
WHERE IT CAUSES US EVEN MORE,
DAILY, TO AVOID ANY TYPE OF
SOCIAL SITUATIONS.
SO BECAUSE I AM AWARE OF ALL OF
THAT, I DO WHAT I CAN WHEN IT
COMES TO MY SELF-CARE, BEING AN
ADVOCATE FOR MYSELF, TO NOT ONLY
MANAGE CERTAIN TYPES OF
BEHAVIORS, BUT TO STILL SEE WHAT
I CAN DO WHERE I CANNOT
NECESSARILY -- I DON'T WANT TO
USE THAT TERM, I DON'T WANT TO
USE THAT TERM IN TERMS OF FIT
IN, BUT TO HELP OTHERS TO
UNDERSTAND, TO BE MORE ACCEPTING
OF INDIVIDUALS WHO ARE AUTISTIC.
AND SO I DO KNOW BASED ON
RESEARCH THAT I HAVE DONE THAT,
YOU KNOW, THERE ARE EXPERTS THAT
SAY THEY'RE CONFIDENT THAT
AUTISM DOESN'T GET WORSE WITH
AGE, BUT DR. ROBINSON JUST
REALLY HIT ON A POINT WHERE -- I
WAS TAKING NOTES WHERE HE SAID
THAT, THE OLDER THAT WE BECOME,
MORE AUTISTIC TRAITS BEGIN TO
SURFACE.
AND THIS IS WHAT I HAVE NOTICED
WHEN IT COMES TO ME.
SO WHEN THAT HAPPENS, YOU KNOW,
EVEN THOUGH I KNOW THERE'S STILL
NOT A LOT OF WHAT WE DON'T KNOW
ABOUT IN THE EXPERIENCES, WHEN
IT COMES TO OL OLDER AUTISTIC
PEOPLE, BECAUSE IT CAN BE
DIFFICULT TO DIAGNOSE.
IT COULD BE VERY DIFFICULT TO
DIAGNOSE ESPECIALLY IN OLDER --
OLDER ADULTS BECAUSE A LOT OF
THE SYMPTOMS OR THE TRAITS CAN
ACTUALLY MIRROR OTHER
AGE-RELATED CONDITIONS.
SO I REALLY DON'T -- YOU KNOW, I
CAN GO ON AND ON AND TALK, YOU
KNOW, MORE AND MORE ABOUT THIS,
AND I KNOW THERE'S TIME, WE'RE
LIMITED ON TIME SO I JUST WANTED
TO KIND OF KEEP IT BRIEF AND
SHORT AND JUST KIND OF SHARE MY
EXPERIENCE AND WHATEVER ADVICE I
CAN GIVE TO Y TO FAMILY, FRIEND,
PARTNERS OF OLDER ADULTS SUCH AS
MYSELF, IS TO DEFINITELY EDUCATE
YOURSELF ON HOW TO BE AN
ADVOCATE.
HAVE PATIENCE.
HAVE PATIENCE BECAUSE ESPECIALLY
DURING THE MELTDOWNS, WHICH I
STILL GET, I STILL GET THOSE AND
IT HAPPENS, DEPENDING ON THE
SOCIAL SETTING, ANYTHING THAT
CAN TRIGGER THAT, SO JUST TO
HAVE THAT PATIENCE AND TO
DEFINITELY KEEP A WATCHFUL EYE,
ESPECIALLY FOR THOSE OF US WHO
LIVE INDEPENDENTLY.
I LIVE INDEPENDENTLY, AND TO
KEEP THAT WATCHFUL EYE AND
FAMILY SUPPORT, FRIENDS SUPPORT,
PARTNER SUPPORT, THAT IS SO, SO
KEY, AND I JUST WANT TO SHARE
JUST ONE OF THE THINGS, EXAMPLES
OF WAYS THAT I DO GET SUPPORT
TBR FAMILY.
FROM FAMILY.
I JUST MOVED TO A NEW CITY HERE,
A NEW STATE, WHERE I'M
ORIGINALLY FROM MICHIGAN SO I
LIVE IN ANOTHER STATE NOW AND I
DO HAVE FAMILY HERE, BUT ONE
EXAMPLE IS THAT MY NIECE, IF SHE
DOESN'T HEAR FROM ME WITHIN 48
HOURS, SHE WON'T JUST CALL ME,
SHE WILL FACETIME ME AND SAY,
HEY, I HAVEN'T HEARD FROM YOU, I
WANT TO SEE YOUR FACE.
SO SHE WANTS TO SEE IF I'M OKAY.
SO THAT'S --
>>THANK YOU, DR. HARRIS.
IN THE INTEREST OF TIME TO MAKE
SURE WE GIVE ALL THE
PANELISTS --
>>ABSOLUTELY.
SO THAT WAS MY CLOSING
STATEMENT.
>>THANK YOU VERY MUCH.
WE APPRECIATE IT.
>>THANK YOU.
>>AND WE'LL MOVE ON NEXT TO
RUTH JONES.
MS. JONES.
>>GOOD AFTERNOON.
HERE ON THE SLIDE, LET ME SEE --
I HAVE A LITTLE SLIDE SHOW HERE.
MY NAME AGAIN IS RUTH JONES.
I AM THE SISTER AND LEGAL
GUARDIAN FOR MY SISTER -- MY
BROTHER, PETER JONES, THAT YOU
SEE ON THE SCREEN HERE.
I JUST THOUGHT I'D SHARE THESE
FEW FAMILY PHOTOS OF HIM.
HE, OF COURSE, THAT'S HIS
YOUNGEST PICTURE THERE IN THE
MIDDLE.
HE'S WITH MY OLDER SISTER FERN
AND I'M THE YOUNGER SISTER ON
THE RIGHT.
WE'RE THE TWO FAMILY MEMBERS
THAT KNEW PETER THE BEST AND HAS
STAYED VERY CLOSE TO HIS
CIRCUMSTANCES.
I ALSO INCLUDE A PICTURE OF
PETER IN THE MIDDLE.
I ALWAYS THOUGHT HE WAS MY
BEST-LOOKING BROTHER WITH THE
REST OF MY BROTHERS, AND THEN
PETER ON THE END, WHERE HE
HAS -- IS A CURRENT PICTURE OF
PETER.
SO YOU CAN REMOVE THE SLIDES NOW
OR LEAVE THEM IN THE BACKGROUND,
HOWEVER.
BUT FIRST OF ALL, LET ME START
BY ALSO THANKING DR. DANIELS FOR
INVITING ME HERE TODAY TO SHARE
ABOUT PETER, AS WELL AS
RECOMMEND -- WAS RECOMMENDED BY
JIM AGRINE STAFF, WHO IS PETER'S
DIRECTOR TR CAROLINA LIVING AND
LEARNING CENTER, CLLC.
HE IS CURRENTLY A RESIDENT
THERE, AND HAS BEEN A RESIDENT
THERE FOR ALMOST 31 YEARS.
BEFORE I GET INTO TALKING ABOUT
PETER'S CURRENT ISSUES, LET ME
GIVE A QUICK BACKGROUND.
PETER WAS DIAGNOSED WITH MENTAL
RETARDATION IN EARLY 1960s,
WHICH WAS DISCOVERED AROUND THE
TIME HE WENT TO KINDERGARTEN.
HE WOULD NOT BE ABLE TO BE
EDUCATED IN THE TRADITIONAL
PUBLIC SCHOOL SITUATION.
SO THEN HE WAS THE YUCKE YOUNGEF
MY PARENTS' SEVEN CHILDREN, SO
THEY WENT TO WORK REALLY HARD TO
FIND OUT WHAT ELSE WAS WRONG
WITH THEIR CHILD BECAUSE WHEN HE
WAS PUT INTO CLASSES FOR M.R.
STUDENTS, HE DIDN'T SHOW THE
SLOW DEVELOPMENT ISSUES, HE
WASN'T DOWN SYNDROME, HE HAD A
LACK OF EYE CONTACT, THE
ROCKING, THE COMMUNICATION
ISSUES.
HE JUST WAS NOTABLY DIFFERENT.
AND AT THAT TIME, AUTISM WAS NOT
A HOUSEHOLD WORD, YOU KNOW, AS
PEOPLE KNOW ABOUT AUTISM NOW.
I KNOW IT WAS FIRST CLASSIFIED
IN 1940s.
HOWEVER, IT JUST WASN'T A
WELL-KNOWN PHENOMENA AT THAT
TIME.
FORTUNATELY, WE LIVED IN
RALEIGH, NORTH CAROLINA, WHICH
IS ONLY 30 MILES FROM UNC CHAPEL
HILL, WHERE IN 1972, DR. SHOPLER
HAD BROUGHT A PROGRAM CALLED
TEACH TO UNC, AND TEACH STANDS
FOR TREATMENT AND EDUCATION OF
AUTISTIC AND
COMMUNICATION-RELATED
HANDICAPPED CHILDREN.
WELL, PETER WAS EVALUATED BY
TEACH.
AND THEN MY PARENTS BEGAN TO
FEEL MUCH MORE HOPEFUL ABOUT
WHAT COULD BE DONE FOR THEIR
SON, THE PROVISIONS FOR HIM.
ALSO IN THE EARLY 1970s, THE
SOCIETY FOR AUTISM, AUTISM
SOCIETY OF NORTH CAROLINA BEGAN,
AND MY PARENTS BECAME VERY
ACTIVE MEMBERS OF THAT.
MY MOTHER USED TO SAY THAT -- I
REMEMBER HER SAYING THAT SHE AND
MY FATHER HAD BEEN TO MORE
MEETINGS ACROSS THE STATE OF
NORTH CAROLINA FOR MORE COUNTIES
IN NORTH CAROLINA FOR THIS ONE
CHILD THAN ALL SEVEN OF US PUT
TOGETHER.
SO THEN PETER WAS ABLE TO GO TO
PUBLIC SCHOOL IN THE 1980s TO
A SPECIAL NEEDS SCHOOL.
THERE IN THIS SCHOOL, HE WAS IN
CLASSES FOR THE AUTISM, AND HE
GRADUATED IN THE EARLY 1980s,
AT THAT TIME, WHEN WE'RE GETTING
INTO THE EIGHTIES, WE'RE TALKING
ABOUT RAINMAN, THE SHOW COMES
OUT, THE MOVIE COMES OUT, AND
PEOPLE ARE BEING MORE EXPOSED TO
AUTISM, THE SOCIETY IS, AND MORE
PROVISIONS ARE POPPING UP.
REGARDLESS OF THAT, PETER WAS AT
HOME BY NOW, LIVING WITH MY
PARENTS AND THE REST OF THE
FAMILY.
HE WAS GOING TO A WORKSHOP.
BUT MY -- AND HE ENJOYED THE
WORKSHOP VERY MUCH, BUT MY
PARENTS NEWELL, THEY KNEW, THEYR
LATE '50S AND 60s AT THAT
TIME, KNEW THEY WOULD AGE OUT IN
BEING ABLE TO CARE FOR PETER.
SO THEY WORKED VERY HARD
DILIGENTLY TO SEE GROUP HOMES
LIKE THE ONE PETER LIVES IN NOWW
COME INTO FRUITION.
PETER IS CURRENTLY 62 YEARS OLD,
AND HE LIVES IN A GROUP HOME
WHERE WE WORK WITH THE
PROFESSIONAL STAFF THERE TO MAKE
SURE ALL PETER'S NEEDS,
INTELLECTUAL DEVELOPMENTAL
NEEDS, BEHAVIOR PROGRAMMING,
VOCATIONAL PROGRAM, ADAPTIVE
SKILLS, PSYCHOLOGICAL,
EMOTIONAL, SOCIAL, NUTRITIONAL,
AND PHYSICAL HEALTH CONCERNS ARE
MET.
PETER IS ON THE SPECTRUM, BUT
PETER, UNLIKE OUR OTHER GUESTS
SO FAR, IS INTELLECTUALLY --
CANNOT SPEAK FOR HIMSELF.
HE SPEAKS IN -- HE CAN SAY SOME
PHRASES.
HE HAS LEARNED SOME PHRASES.
HE CAN TELL YOU PETER WANTS
SOMETHING.
HE CAN COMMUNICATE SOME
CONCERNS, BUT HE DOES NOT HAVE
LANGUAGE, AND YOU COULD NOT HAVE
A CONVERSATION WITH HIM.
THEREFORE, HIS FAMILY HAS TO
REPRESENT HIM.
HIS CHALLENGES ARE, TODAY, WHEN
WE TALK ABOUT HIS CHALLENGES,
HE'S 62 YEARS OLD.
HE'S HAD SOME TRADITIONAL HEALTH
CHALLENGES THAT COME WITH AGING.
FOR INSTANCE, JOINT HEALTH,
WHICH A LOT OF US IN OUR FAMILY
HAVE.
BUT BECAUSE OF HIS -- HE HAS
ARTHRITIS IN HIS KNEES, BUT
BECAUSE OF HIS LANGUAGE BARE
YES, IT'S HARD FOR PETER TO TELL
YOU THAT HE'S IN PAIN.
OR HE HAS A HIGH PAIN THRESHOLD,
SO WE'VE WORKED WITH THE
FACILITY AND THEY'VE COME UP
WITH A LOT OF VERY GOOD VISUAL
PROPS THAT PETER USES THAT HE
CAN INDICATE WHEN HE'S FEELING
PAIN.
THIS IS VERY HELPFUL.
ON THE OTHER HAND, PETER HAS HAD
SEVERAL PHYSICAL ISSUES THAT ARE
MORE RELATED TO HIS AUTISM.
PART OF PETER'S ISSUE IS THAT
PETER SEEKS PRESSURE, AND HE
PUSHES AND STRAINS WHEN GOING TO
THE BATHROOM.
THAT'S CREATED PROBLEMS.
ONE TIME, HE WAS GRINDING AND
SUCKING HIS TEETH, THAT CREATED
A LOT OF DENTAL ISSUES.
BUT GOING BACK TO THE ISSUE WITH
HIS STRAINING AND PUSHING, HE
HAD TO HAVE MAJOR SURGERY SOME
YEARS AGO BECAUSE OF A PROLAPSED
RECTUM.
AND THE RECTUM FLOOR WAS, YOU
KNOW -- THE NETTING -- THEY HAD
TO PUT SOME KIND OF NETTING IN
THERE TO BRING THE FLOOR BACK
UP, BECAUSE OF HIS AUTISTIC
BEHAVIOR, SOME OF THE THINGS HE
WAS DOING.
SO WHEN YOU HAVE A PERSON THAT
CAN'T EXPRESS PAIN AND HAS --
KNOWING HOW TO COMMUNICATE WITH
HIM WAS VERY IMPORTANT.
SO NOT ONLY DID THEY DO THE
VISUAL PROGRAM, BUT THEY'VE GONE
THROUGH A REWARD SYSTEM TO HONOR
PETER FOR GOOD BEHAVIOR AND BE
ENCOURAGING HIM NOT TO PUSH AND
STRAIN.
HE CONSISTENTLY HAS TOILETING
ISSUES, THOUGH, THAT -- WHEN IT
COMES TO HIM SPENDING TIME WITH
FAMILY OR FRIENDS, THERE ARE
CHALLENGES WHEN YOU'RE DEALING
WITH A 62-YEAR-OLD AUTISTIC MAN
WHO STILL WEARS, YOU KNOW,
PROTECTIVE UNDERWEAR AND TO HELP
TO MAINTAIN, YOU KNOW, HEALTHY
HYGIENE AND SO ON.
ALONG WITH HEALTH, PHYSICAL
HEALTH ISSUES, ANXIETY, AS JOHN
WAS SPEAKING OF, I CAN'T AGREE
MORE THAT I DO BELIEVE ANXIETY
INCREASES WITH AGE.
PETER HAS BEEN AT THIS FACILITY
FOR 31 YEARS, AND I AM THE THIRD
GUARDIAN, AND I AM THE FIRST
GUARDIAN TO EVER PUT PETER ON
MEDICATION.
MY FATHER BEFORE ME AND MY
SISTER AND MY FAMILY GENERALLY
OBJECTED TO PETER RECEIVING
MEDICATION TO CONTROL ANGITE AND
ANXIETYAND SOME OF HIS ISSUES, T
WAS SHARED WITH ME THAT THEY
WERE CREATING MORE STRESS FOR
HIM.
THEY COULD TELL WITH HIS
REPETITIVE ACTIONS AND QUESTIONS
AND SO ON.
SO, THEREFORE, WE'VE ALSO --
THEY ALSO USE THE SENSORY DIET
WHICH MY SISTER HELPED BRING TO
THE FACILITY AS WELL.
I'M SURE SOME OF YOU HAVE HEARD
OF THE SENSORY DIET.
IT'S A GROUP OF ACTIVITIES THAT
ARE SPECIALLY SCHEDULED INTO HIS
DAY TO AROUSE ADAPTIVE
RESPONSES.
HE ALSO USES THINGS LIKE
WEIGHTED BLANKETS, PRESSURE
GARMENTS LIKE TIGHT UNDERWEAR,
TIGHT T-SHIRTS, THINGS TO HELP
HIM TO DEAL WITH THE PRESSURE
NEEDS HE HAS.
ANOTHER ISSUE I HAVE IS
SUCCESSION AND GUARDIANSHIP.
LET ME ADD ONE OTHER THING TOO.
HIS ANXIETY ISSUES, PETER IS
VERY EMOTIONAL LISTENSTIVE SENSN
WITHOUT LANGUAGE.
WE HAD AN INCIDENT MANY YEARS
AGO WHERE HE WOULD SHOUT OUT
VERY ANGRY ABOUT A COUSIN,
WHENEVER WE WERE TOGETHER WITH
FAMILY.
WE DIDN'T KNOW WHAT HE WAS
TALKING ABOUT.
LATER ON, THE COUSIN SHARED HE
HAD PINCHED PETER.
PETER CARRIED THIS GRUDGE FOR
10, 15 YEARS.
UNTIL THAT COUSIN MADE UP WITH
PETER, HE WAS FINE THEN, BUT HE
WASN'T ABLE TO SAY THAT TO ANY
OF US.
HE COULDN'T EXPLAIN THAT TO US.
SO THOSE ARE SOME OF THE
CONCERNS WE HAVE, THE
COMMUNICATION NEEDS FOR PETER
AND HIS ANXIETY.
GOING ON, I ONLY HAVE A COUPLE
OTHERS.
SUCCESSION AND GUARDIANSHIP.
AS I MENTIONED, MY FATHER WAS
HIS FIRST GUARDIAN, AND HE WAS
HIS GUARDIAN UNTIL ABOUT 2002,
BEFORE HIS HEALTH, WHEN HIS
HEALTH STARTED TO DECLINE, AND
MY SISTER THEN BECAME HIS
GUARDIAN AND WAS HIS GUARDIAN
UNTIL HER UNTIMELY DEATH IN
2017.
I'VE BEEN THE GUARDIAN SINCE.
WE HAVE TRIED TO INVOLVE FAMILY
IN PETER'S INDIVIDUAL
PROGRAMMING MEETINGS THEY HAVE
AT HIS -- AT THE CLLC FOR HIM.
WE'RE TRYING TO KEEP THE SECOND
GENERATION, OUR NIECES AND
NEPHEWS, I DON'T HAVE MY
CHILDREN -- I DON'T HAVE ANY
CHILDREN MYSELF, BUT WE'RE
TRYING TO KEEP THEM INVOLVES IN
PETER'S NEEDS, AND PETER'S
CONCERNS, BECAUSE AN UNTIMELY
DEATH COULD HAPPEN TO ME OR ANY
OF US.
PETER HAS LOST NOT ONLY MY
FATHER AND MY SISTER, BUT I LOST
ANOTHER BROTHER LAST YEAR WHO
WAS PART OF HIS CARE TEAM, AND
THERE ARE A COUPLE OF RESIDENTS
AT THE FACILITY THAT HE HAS
LOST.
SO GRIEF BECOMES ANOTHER ISSUE.
HOW DO WE DEAL WITH GRIEF?
WE'VE HAD A SCRIPT AS A FAMILY
THAT WE'VE USED TO TRY TO HELP
PETER RATIONALIZE THIS LOSS.
WE SAY, DADDY'S GONE TO HEAVEN.
OUR FERN HAS GONE TO HEAVEN.
PETER WILL COME BACK AND SAY
PETER GO TO HEAVEN OR RUTHIE GO
TO HEAVEN.
HE KNOWS ONCE YOU GO, YOU DON'T
COME BACK.
WE HAVE -- OUR MOTHER IS
96 YEARS OLD AND I AM CONCERNED
AT HOW HE WILL HANDLE HER
IMMINENT DEATH.
THE OTHER ISSUE I HAVE AS FAR AS
A GUARDIAN MYSELF, AND THIS IS
WHERE THE FEDERAL ORGANIZATIONS
CAN BE HELPFUL, I AM ONE OF THE
FEW GUARDIANS AT HIS FACILITY
THAT MANAGE HIS FUNDS, HIS
SOCIAL SECURITY FUNDS AS WELL AS
ANY FUNDS HE RECEIVES FROM
WORKING AT THE FACILITY.
I HAVE TO ACCOUNT FOR EVERY DIME
I SPEND AND TURN THIS IN TO THE
CLERK OF COURT AND I HAVE AN
ATTORNEY THAT HELPS ME WITH
THIS.
BUT IN WORKING WITH THE
DEPARTMENT OF SOCIAL SERVICES, I
FIND THAT MOST OF HOW THEY WANT
ME TO JUSTIFY HIS INCOME IS ONLY
RELATED TO UNMET MEDICAL NEEDS.
ALMOST EXCLUSIVELY.
THEN I'M TOLD BY THE COURTS AS A
GUARDIAN I MUST BE BONDED.
I MUST -- I'M TO TAKE THE BOND
OUT OF HIS SOCIAL SECURITY
MONEY.
I'M TO TAKE THE FEES FOR HIS
ACCOUNTING OUT OF HIS SOCIAL
SECURITY FUNDS.
UNFORTUNATELY, THESE TWO
GOVERNMENT ENTITIES DO NOT
BRIDGE, THEY DO NOT KNOW WHAT
THE OTHER DOES, THEY DON'T
NECESSARILY AGREE WHAT WITH WHAT
THE OTHER DOES, SO I'M IN A
CURRENT SITUATION WHERE I AM
TRYING TO GET THIS SORTED OUT,
TRYING TO GET SOME
UNDERSTANDING.
I KNOW IT'S SOMETHING THAT MY
SISTER STRUGGLED WITH AS WELL.
JUST WHAT IS THE GUARDIAN
SUPPOSED TO DO?
I'M THE ESTATE GUARDIAN AS WELL
AS THE GUARDIAN OF THE PERSON.
THE LAST THING THAT CONCERNS ME
IS -- AND THIS IS MY LAST
COMMENT -- HAS TO DO WITH
COGNITIVE DECLINE AND DEMENTIA.
MY MOTHER HAS DEMENTIA AND I
HAVE A COUPLE BROTHERS THAT ARE
ALSO SHOWING SIGNS OF EARLY
DEMENTIA.
THE DIRECTOR AT CLLC ACTUALLY
THIS AFTERNOON AND FOR ALL THIS
WEEK IS IN A CONFERENCE CALLED
DEMENTIA-CAPABLE CARE FOR ADULTS
WITH IDD.
SO THIS IS ABOUT ADULTS THAT
HAVE AUTISM, THEY'RE ALREADY ON
THE SPECTRUM WITH COGNITIVE
CHALLENGES, FOR INSTANCE, THOSE
LIKE MY BROTHER WHO HAS A LOT OF
COGNITIVE CHALLENGES, AND THEN
YOU PUT DEMENTIA ON TOP OF THAT.
THAT SOUNDS LIKE A TRUE ACCIDENT
WAITING TO HAPPEN.
OR WHAT DO YOU DO WITH THAT, HOW
DO WE -- HOW DO WE SERVE THIS
POPULATION WHEN THIS IS GOING
ON.
AND THINK WE NEED TO HAVE MORE
RESEARCH ABOUT THAT AND CONTINUE
TO RESEARCH THAT SUBJECT.
SO I THANK YOU FOR MY TIME, FOR
THE TIME TO SHARE WITH YOU ABOUT
MY BROTHER PETER IE.
I I'M SORRY I DON'T HAVE
PICTURES OF MY WONDERFUL PARENTS
BUT I HOPE I SHARED SOMETHING
THAT WILL BE HELPFUL TO ALL.
>>THANK YOU VERY MUCH,
MS. JONES.
WE REALLY APPRECIATE YOU COMING
HERE AND TALKING ABOUT YOUR
FAMILY AND YOUR BROTHER.
NEXT UP, WE HAVE LISA MORGAN,
WHO IS GOING TO TALK TO US ABOUT
HER OWN EXPERIENCES.
MS. MORGAN.
>>THANK YOU.
I ALSO WANT TO THANK SUSAN
DANIELS FOR INVITING ME TO BE
PART OF THIS PANEL TODAY.
I WAS DIAGNOSED WITH ASPERGER'S
SYNDROME AT 48 YEARS OLD AND I
JUST WANT TO SAY I COMPLETELY
AGREE WITH THE OTHER PANELISTS
THAT MY ANGI ANXIETY IS GETTINGE
AS I'M GETTING OLDER.
I'M GOING TO BE DISCUSSING MY
LIVED EXPERIENCE THROUGH WHAT I
HAVE EXPERIENCED AND LEARNED
SINCE MY HUSBAND DIED BY SUICIDE
IN 2015.
THERE'S A NEED FOR CRISIS
SUPPORTS FOR OLDER AUTISTIC
ADULTS.
MY EXPERIENCE, MY STORY, IS
GOING TO BE WITHIN THE FOLLOWING
INFORMATION AND IT'S THE WAY
I'VE CHOSEN TO SHARE IT.
RESEARCH HAS SHOWN SUICIDE TO BE
A LEADING CAUSE OF DEATH FOR
AUTISTIC PEOPLE WITHOUT
INTELLECTUAL DISABILITIES ACROSS
THE LIFESPAN.
A STUDY DONE BY STUARTETH ALL IN
2022 WITH MIDDLE AGED OLDER
AUTISTIC ADULTS FOUND A 5 TO
6 FOLD INCREASE IN THE
POSSIBILITY OF SELF HARMING
BEHAVIORS AND SUICIDALITY THAN
IN THE GENERAL POPULATION OF THE
SAME AGE GROUP.
EVEN WHEN CONTROLLED FOR
SYMPTOMS OF DEPRESSION.
THIS FINDING INDICATES OLDER
AUTISTIC ADULTS MAY BE AT A
PARTICULARLY HIGH RISK OF SELF
HARM AND SU SUICIDAL BEHAVIORS.
THE UNIQUE RISK FACTORS MOST
COMMONLY RESEARCHED FOR AUTISTIC
PEOPLE ARE EVEN CHALLENGING FOR
OLDER AUTISTIC ADULTS.
MASKING, FOR INSTANCE, WHILE A
SOCIAL STRATEGY TO FIT IN AND
HAVE SUCCESS WITH SOCIAL
INTERACTIONS AND COMMUNICATION
IS A UNIQUE RISK FACTOR OF
SUICIDE FOR AUTISTIC PEOPLE.
PEOPLE DIAGNOSED WITH AUTISM AT
AN OLDER AGE HAS BEEN MOST
LIKELY MASKING FOR DECADES AND
RESEARCH HAS SHOWN MASKING TO
HAVE A NEGATIVE EFFECT ON MENTAL
HEALTH AS WELL.
AND THIS IS DUE TO THE ACTUAL
ACT OF MASKING, AS AUTISTIC
PEOPLE SUPPRESS ANY SENSORY
STIMULATION IN THE ENVIRONMENT
WHILE THEY CHANGE THEIR NATURAL
WAY OF BEING TO LOOK AND ACT
NON-AUTISTIC, PUT THE CORRECT
EMOTION ON THEIR FACES AND KEEP
UP WITH WHATEVER SOCIAL EVENT
THEY'RE PARTICIPATING IN.
IT'S EXHAUSTING.
AUTISTIC PEOPLE USUALLY NEED TO
WITHDRAW AND REGULATE FOR
SELF-CARE AFTER SOCIAL EVENTS,
SCHOOL DAY OR WORK, DUE TO HOW
EXHAUSTING MASKING CAN BE.
AS WELL, THEY, WE, ARE NOT
GETTING THE BENEFIT OF
COMPANIONSHIP AND RELATIONSHIP
WHILE MASKING BECAUSE WE'RE NOT
BEING ABLE TO BE OUR TRUE
SELVES, WHICH IN THE END, WHILE
WE MAY HAVE PARTICIPATED
SUCCESSFULLY IN A SOCIAL EVENT,
NO ONE ACTUALLY MEET US, THE
CHOICE TO BE KNOWN FOR WHO YOU
ARE AS AN AUTISTIC PERSON AND
TAKE THE CHANCE OF BEING
REJECTED OR AT THE VERY LEAST
NOT ACCEPTED OR MASK AND NOT BE
KNOWN FOR WHO YOU ARE AS A
PERSON.
NUMBER OF UNMET SUPPORT NEEDS IS
ALSO A UNIQUE RISK FACTOR OF SUE
SUICIDE FOR AUTISTIC PEOPLE.
UNDIAGNOSED OR NEWLY DIAGNOSED
OLDER AUTISTIC ADULTS MAY HAVE
DIFFICULTY OBTAINING OR
ACCESSING SUPPORT SERVICES THAT
CAN HELP THEM WITH HOUSING,
EMPLOYMENT, PHYSICAL, MEDICAL
HEALTHCARE, INCLUDING THERAPY OR
OTHER FORMS OF MENTAL
HEALTHCARE.
THERE WAS A NATIONAL STUDY DONE
IN DENMARK IN 2016 THAT FOUND
THAT 90% OF THE AUTISTIC PEOPLE
IN THE STUDY HAD CO-OCCURRING
MENTAL HEALTH CONDITIONS WITH
ANXIETY BEING THE MOST
PREVALENT.
SOME OF THE REASONS FOR THE
DIFFICULTY IS CHALLENGES WITH
EXECUTIVE FUNCTIONING SKILLS,
DAILY LIVING SKILLS AND THE
SOCIAL SKILLS NEEDED TO REACH
OUT FOR SUPPORT SERVICES.
KNOWING WHO TO CALL, WHAT TO
SAY, OR EVEN WHAT MIGHT BE
IMPORTANT TO REMEMBER CAN BE
DIFFICULT FOR OLDER AUTISTIC
PEOPLE WHO HAVE NEVER DONE
ANYTHING LIKE THAT BEFORE.
FOLLOW-UP APPOINTMENTS,
COMPLICATED DIRECTIONS AND
SIMPLY USING THE PHONE TO
COMMUNICATE CAN BE SO DAUNTING
THAT OLDER AUTISTIC ADULTS
SIMPLY DO NOT OR CANNOT DO IT.
OLDER AUTISTIC PEOPLE CAN ALSO
FIND BENEFITS IN ESTABLISHING A
SAFETY NET OF SUPPORT PEOPLE BUT
DUE TO SOCIAL COMMUNICATION
DIFFICULTIES AND THE ISOLATION
THAT CAN COME AS PEOPLE GET
OLDER AND MORE RESTRICTED TO
HOME, IT CAN BE VERY DIFFICULT
TO DEVELOP A SUPPORT NETWORK.
SOCIAL ISOLATION OR -- BELONGING
ARE ALSO UNIQUE FACTORS OF
SUICIDE FOR AUTISTIC PEOPLE.
ACCORDING TO CDC DATA, SOME 40%
OF OLDER AUTISTIC ADULTS SPEND
LITTLE OR NO TIME WITH FRIENDS.
I'VE SEEN THAT FIRSTHAND AS A
FACILITATOR OF A SUPPORT GROUP
FOR OLDER AUTISTIC WOMEN.
THE SUPPORT GROUP IS THE ONLY
SOCIAL EVENT SOME OF THE WOMEN
ATTEND AND WE MEET ONCE A MONTH
FOR AN HOUR AND A HALF.
ALSO MANY ONLINE SUPPORT GROUPS
FILL UP QUICKLY AND THERE'S
REALLY A NEED FOR MORE ONLINE
SUPPORT.
OTHER UNIQUE RISK FACTORS OF
SUICIDE FOR AUTISTIC PEOPLE ARE
BEING DIAGNOSED LATER IN LIFE,
BEING AN AUTISTIC FEMALE.
SOME OF THE REASONS ARE DUE TO A
LIFETIME OF NEGATIVE SOCIAL
EXPERIENCES: NOT BELONGING,
BEING OSTRACIZED, KNOWING
THEY'RE DIFFERENT BUT NOT
KNOWING WHY, LONELINESS, DAILY
STRUGGLES TO JUST BE, RESULTING
IN UNRESOLVED TRAUMA, PTSD AND
AUTISM BURNOUT.
AUTISM BURNOUT IS A SYNDROME OF
CON SCONSTANT EXHAUSTION, LOSS F
SKILLS AND REDUCED TOLERANCE --
DUE TO THE DEMANDS OF LIFE
CHRONICALLY OUTWEIGHING THE
ABILITY TO COPE AND LACK OF
SUPPORT.
RESULTS FROM A STUDY DONE BY
RAINMAKER E ET AL. IN TWEP 20
FOUND THAT MASKING AS WELL AS
EXPERIENCING STIGMATIZATION CAN
LEAD TO AUTISM BURNOUT WHICH CAN
LEAD TO SUICIDAL -- CULTURAL
COMPETENCE AND HUMILITY WHILE
SUPPORTING THEM.
ALSO UNDERSTANDING THAT AUTISM
HAS ITS OWN STRENGTHS AND
CHALLENGES CAN HELP WITH
COMMUNICATING AND SUPPORTING
AUTISTIC PEOPLE, AND SOME OF THE
STRENGTHS OF AUTISTIC PEOPLE CAN
BE USED TO HELP DURING A CRISIS.
SUCH AS BEING RULE-BASED OR
ADHERENCE TO ROUTINES, THESE
STRENGTHS CAN BE HELPFUL WHEN
THE USE OF A SAFETY PLAN IS
CRUCIAL TO STAYING SAFE.
HONESTY IS A STRENGTH IN
SUICIDAL INTENT.
USING A SAFETY PLAN WOULD BE
FAIR TO ONE'S SELF OR ONE'S
FAMILY.
PASSIONS CAN BE REASONS FOR
LIVING.
BEING DETAIL ORIENTED CAN BE
USEFUL IN KNOWING WHEN TO GET
SUPPORT TO IMPLEMENT A SAFETY
PLAN.
CREATIVITY IN PROBLEM SOLVING
CAN BE USEFUL FOR EVERY ASPECT
OF STAYING SAFE IN A SUICIDAL
CRISIS.
THERE ARE ALSO RESOURCES
AVAILABLE TO HELP PROFESSIONALS
COMMUNICATE WITH AUTISTIC PEOPLE
IN CRISIS.
THE CRISIS SUPPORTS THE AUTISM
COMMUNITY TOOLKIT DEVELOPED BY
THE AUTISM AND SUICIDE COMMITTEE
OF THE AMERICAN ASSOCIATION OF
SUICIDOLOGY IS BEING USED IN
CRISIS CENTERS ACROSS THE
NATION.
TO BOTH IDENTIFY AND COMMUNICATE
WITH AUTISTIC PEOPLE IN CRISIS.
THE TOOLKIT IS ALSO BEING USED
BY OTHER PROFESSIONALS AND EVEN
FAMILY AND FRIENDS.
SOMETIMES THAT'S THE ONLY THING
OLDER AUTISTIC PEOPLE ADULTS
HAVE IS THE -- YOU KNOW, THE
CRISIS CALL LINES AND TEXT
LINES.
MORE ONLINE SUPPORT GROUPS,
SOCIAL EVENTS AND EVEN EDUCATION
ABOUT HOW TO REACH OUT FOR
SUPPORT NEEDS, BUILD A SUPPORT
NETWORK, FINANCIAL INFORMATION,
DAILY LIVING SKILLS,
COMMUNICATION SKILLS AND MANY
OTHER TOPICS CAN HELP OLDER
AUTISTIC ADULTS HELP THEMSELVES.
FOR EXAMPLE, THE WEBSITE AUTISM
AND GRIEVE.ORG THAT RUTH JUST
BROUGHT UP ABOUT HER BROTHER,
UNDERSTANDING LOSS, THAT HAPPENS
FOR A LOT OF AUTISTIC PEOPLE.
IT'S THE FIRST TOOL OF ITS KIND
AND HELPS AUTISTIC PEOPLE WHO
ARE DEALING WITH GRIEVING AND
LOSS.
THEY CAN BE ISOLATED AND HAVE NO
ONE TO ASK ABOUT GRIEF AND LOSS.
SO WE NEED MORE TOOLS LIKE THIS
WEBSITE TO SUPPORT OLDER
AUTISTIC PEOPLE IN OTHER AREAS
OF THEIR LIFE.
THAT'S IT FOR ME.
THANK YOU.
>>THANK YOU VERY MUCH,
MS. MORGAN.
FINALLY, IACC STAFF PERSON ONI
CELESTIN ARE READ COMMENTS FROM
MS. SWEZEY.
>>GOOD AFTERNOON, EVERYONE.
THE FOLLOWING WAS SUBMITTED BY
MS. SUE SWEZEY FOR CONSIDERATION
BY THE IACC.
I APPRECIATE THE CHANCE TO
COMMENT ON THE WORK AND GOALS OF
THE IACC, EVEN THOUGH I CANNOT
ATTEND THE MEETING.
AS THE PARENT OF A 59-YEAR-OLD
AUTISTIC SON, I HAVE EXPERIENCED
THE ENTIRE RANGE OF AUTISM
SERVICES OR LACK OF THEM FROM
THEIR BEGINNINGS IN THE 1960s.
WHILE PROGRESS HAS BEEN MADE,
THERE ARE STILL TERRIFYING GAPS
IN THE FUTURE FOR ADULTS ON THE
SPECTRUM AND FOR THEIR FAMILIES.
VERY FEW PARENTS FIND IT EASY TO
LOCATE RESIDENTIAL PLACEMENT FOR
THEIR ADULT CHILDREN.
IN FACT, THE PROCESS IS OFTEN
HARROWING AND FRUITLESS, WITH
FEW APPROPRIATE SERVICES
AVAILABLE, AND WITH LONG DELAYS
AND WAITING LISTS.
WHILE THERE SEEM TO BE AN
INCREASING NUMBER OF ACCEPTABLE
GROUP HOMES, THERE ARE STILL
HORROR STORIES OF STAFF
SHORTAGES, UNTRAINED AND
UNQUALIFIED STAFF, INADEQUATE
SERVICES AND ACTIVITIES, AND
SOMETIMES ABUSE.
IN ADDITION, QUALITY DAY
PROGRAMS AND ACTIVITIES ARE HARD
TO FIND.
COVID AND NEW FEDERAL
REGULATIONS HAVE TAKEN A TOLL.
THE RESULT FOR TW TOO MANY PARES
IS THAT AS THE CLIENTS AGE,
FAMILIES MAY AGE FASTER.
SOME PARENTS MAY DIE BEFORE
THEIR ADULTS ARE SECURE.
WHILE OTHER PARENTS MAY NEED AS
MUCH OR MORE CARE THAN THEIR
CHILDREN.
MOST DRASTICALLY AFFECTED ARE
THE OLDEST AUTISTIC CLIENTS AND
THEIR FAMILIES.
WHEN MY SON WAS BORN, THE AUTISM
INCIDENCE WAS 4 IN 10,000.
AS OPPOSED TO TODAY'S
ASTONISHING 1 IN 44.
THE AUTISM SOCIETY OF AMERICA
WAS THEN KNOWN AS NSAC, THE
NATIONAL SOCIETY FOR AUTISTIC
CHILDREN.
BECAUSE THERE WERE SO FEW KNOWN
ADULTS.
TODAY'S ADULTS 60 AND OLDER ARE
INDEED THE TIP OF THE ICEBERG.
THEY ARE THE LEAD DUCKS FOR THE
INCREDIBLY SWOLLEN NUMBERS WHO
FOLLOW.
THEY SET A PRECEDENT, AND
CONSIDERING THE PRESENT SHORTAGE
OF SERVICES, IT IS NOT AN
ENCOURAGING ONE.
I AM GRATIFIED THAT THE IACC IS
CONSIDERING AUTISM NEEDS AT THE
FEDERAL LEVEL.
THIS IS AN IMPORTANT STEP
FORWARD.
I ENCOURAGE THIS TASK FORCE TO
EXAMINE THE ENTIRE SPECTRUM OF
AUTISM NEEDS AND ABILITIES, AND
TO FOCUS ATTENTION ON THE MOST
SEVERELY CHALLENGED WHO HAVE
BEEN LEFT BEHIND FOR SO LONG.
PARENTHETICALLY IN TODAY'S
WORLD, MUCH ATTENTION HAS BEEN
PAID TO AUTISTIC INDIVIDUALS WHO
ARE HIGH ACHIEVERS.
PERHAPS SOME HAVE ATTENDED
COLLEGE AND HAVE HELD JOBS.
SOME ARE EXTREMELY BRIGHT AND
VERY VERBAL.
THIS SEGMENT OF THE AUTISM
POPULATION WAS NOT INCLUDED IN
EARLY AUTISM STUDIES, WHICH
FOCUSED ON CHILDREN WITH FAR
GREATER DIFFERENCES.
THE HIGH ACHIEVERS MAY NEVER
HAVE ENCOUNTERED ANY OF THESE
INDIVIDUALS.
THEY DESERVE PLAWS APPLAUSE FOR
ACCOMPLISHMENTS BUT ARE PROBABLY
NOT OBSERVERS OF THE TOTAL
AUTISM XENO.
BEST OF LUCK TO THE IACC.
I HOPE TO HEAR POSITIVE RESULTS.
PLEASE FEEL FREE TO CONTACT ME
IF I CAN PROVIDE FURTHER
INFORMATION.
BEST REGARDS, SUE SWEZEY.
>>THANK YOU, ONI, FOR READING
THAT, AND THANK YOU TO SUE FOR
JOINING US THROUGH THAT WRITTEN
CONVERSATION.
WE'RE NOW GOING TO TURN OUR
ATTENTION TO HEAR A BRIEF
OVERVIEW OF RESEARCH ON AUTISM
IN OLDER AGE.
JOINING US TO GIVE US THIS BRIEF
OVERVIEW ARE DR. JOE PIVEN, THE
THOMAS CASTELLOE DISTINGUISHED
PROFESSOR OF PSYCHIATRY AND
DIRECTOR OF THE K.
DR. PIVEN, AS YOU KNOW, IS AN
IACC MEMBER HIMSELF.
JOINING DR. PIVEN IS DR. MARSHA
MAILICK, PROFESSOR AND VICE
CHANCELLOR FOR RESEARCH AND
GRADUATE EDUCATION AT THE
EMERITUS WAISMAN CENTER AT THE
UNIVERSITY OF WISCONSIN-MADISON.
THEY'LL BE SHARING AN OVERVIEW
OF RESEARCH ON OLDER AGE AND
AUTISM.
THANK YOU, JOE, MARSHA?
>>THANK YOU.
FIRST I WANT TO THANK THIS
COMMITTEE FOR INCLUDING THIS
TOPIC AND OF COURSE FOR THE
INVITATION.
I WANT TO ACKNOWLEDGE MY
EXPERIENCE WORKING WITH SUSAN
DANIELS OVER THE LAST FEW
MONTHS, AND ALL THE WORK THAT
SHE'S PUT IN TO PULL THIS
TOGETHER.
AND THEN, OF COURSE, I WANTED TO
THANK MY COLLEAGUE, MARSHA
MAILICK, FOR JOINING ME TODAY.
SO OVER THE LAST 30 YEARS, THE
FIELDS OF GERIATRIC MEDICINE AND
GERIATRIC PSYCHIATRY HAVE
ESTABLISHED THE SCIENCE AND
PRACTICE UNDERLYING THE CARE OF
OLDER INDIVIDUALS REQUIRES
SPECIALIZED RESEARCH AND
TRAINING THAT DIFFERS
SUBSTANTIALLY FROM THAT OF
YOUNGER POPULATIONS.
YET WHILE RESEARCH TRAINING AND
SERVICES FOR AUTISM HAVE
SUBSTANTIALLY INCREASED OVER THE
SAME PERIOD, THERE'S BEEN A NEAR
ABSENCE OF RESEARCH ON AUTISM IN
OLDER AGE.
ORIGINALLY DESCRIBED AS A
DISORDER OF INFANTS, SO CALLED
INFANTILE AUTISM BY LEO CONNOR,
OUR CONCEPTION OF AUTISM HAS
EXPANDED SINCE THOSE CHILDREN
FIRST DIAGNOSED IN THE 40s,
50s AND 60s HAVE AGED INTO
THEIR SIXTH, SEVENTH AND EIGHTH
DECADES OF LIFE.
A 2010 ARTICLE THAT I REFERENCE
HERE ON THIS SLIDE IN THE
ATLANTIC MAGAZINE TELLING THE
STORY OF DONALD T., THE FIRST
CHILD DESCRIBED IN CONNOR'S
SEMINAL PAPER THEN DIAGNOSED AT
THE AGE OF 77 AT THE TIME THIS
ARTICLE CAME OUT WAS REALLY THE
FIRST TO ELEVATE THIS TOPIC IN
THE MEDIA.
THE PREVALENCE OF AUTISM IN
SCHOOL AGED CHILDREN IS
CURRENTLY APPROXIMATELY 1 IN 50,
BUT THERE'S GOOD EVIDENCE OF
SIMILAR RATES IN ADULTS.
BUT IT'S BECOMING INCREASINGLY
CLEAR THAT THERE'S A KR DRAMATIC
RECOGNITION OF OLDER AUTISTIC
ADULTS WHO WERE NOT FIRST
IDENTIFIED AS CHILDREN AND ARE
FREQUENTLY MISDIAGNOSED WITH
OTHER PSYCHIATRIC CONDITIONS.
AND WITH THE WELL-KNOWN AGING OF
WESTERN SOCIETIES, THIS PROBLEM
OF A RELATIVELY ABSENT KNOWLEDGE
BASE WILL ONLY GET BIGGER AS
THOSE NOW IDENTIFIED AT YOUNGER
AGES MOVE INTO THIS PERIOD OF
THEIR LIVES.
I'M GOING TO BEGIN THIS BRIEF
PRESENTATION WITH AN EXAMPLE
FROM MY RESEARCH WHERE IN 2015,
WE UNEXPECTEDLY OBSERVED THAT
OLDER ADULTS WITH AUTISM WHO
WERE EXAMINED DIRECTLY WITH A
NEWNEUROLOGICAL EXAM HAD HIGH RS
OF PARKINSON'S DISEASE, AND TWO
INDEPENDENT SMALL, AND I WANT TO
UNDERSCORE THAT THEY WERE SMALL,
SAMPLES, ONE IN NORTH CAROLINA
AND ONE IN PERTH, AUSTRALIA.
20% OF OUR SAMPLE HAD
PARKINSON'S SYNDROME, A RATE
THAT IS 200 TIMES THAT IN THE
GENERAL POPULATION.
THIS FINDING WAS CONSISTENT WITH
WORK FROM LISA CROEN, WHO
SURVEYED A LARGE CLINICAL
DATABASE IN CALIFORNIA, AND MORE
RECENTLY HILDA GERTZ, WHO
COLLECTED QUESTIONNAIRE DATA ON
AUTISTIC ADULTS IN THE
NETHERLANDS.
THESE VERY DIFFERENT APPROACHES
ALL CONVERGED ON A SIMILAR
FINDING.
IF THIS FINDING IS REPLICATED,
ONE OBVIOUS QUESTION IS, WHY IS
THIS HAPPENING?
ONE EXAMPLE THAT HELPS US TO
THINK ABOUT THIS IS DOWN
SYNDROME, A GENETIC DISORDER OF
EARLY DEVELOP M.
MENT.
PEOPLE WITH DOWN SYNDROME NOT
ONLY HAVE A PROBLEM WITH EARLY
DEVELOPMENT, BUT THEY HAVE HIGH
RATES OF EARLY ONSET DEMENTIA
THAT IS DUE TO THE SAME
UNDERLYING BIOLOGY THAT CAUSES
DOWN SYNDROME, AND IT'S NOT AN
UNDERSTANDABLE CONSEQUENCE OF
HAVING A DISORDER OF DEVELOPMENT
OR COGNITION OR LIFESTYLE OR
ACCESS TO CARE.
RECENTLY A GROUP AT DREXEL, LED
BY JACAMO DIVANTE REPORTED HIGH
RATES OF DEMENTIA IN AUTISM,
USING A LARGE MEDICAID DATABASE
SUGGESTING THAT ELEVATED RISK
FOR DEMENTIA IS ALSO AN
IMPORTANT CONSIDERATION IN AGING
AUTISTIC ADULTS.
TAKING THIS A STEP FURTHER,
WHILE WE TEND TO THINK ABOUT THE
BIOLOGICAL ROOTS OF AUTISM AS
BEING IN EARLY CHILDHOOD, THERE
IS EMERGING DATA TO SUGGEST THAT
BRAIN CHANGES MAY NOT BE LIMITED
TO CHILDHOOD, BUT THAT SPECIFIC
BRAIN CHANGES, THAT IS SPECIFIC
TO AUTISM AND SPECIFIC TO
PARTICULAR AGES, OCCUR ACROSS
ADULTHOOD IN AUTISTIC
INDIVIDUALS.
THIS WORK BY BRANDON ZELENSKY
AND JANET LANEHART AT THE
UNIVERSITY OF WISCONSIN IS
CONSISTENT WITH FINDINGS BY
BLARE BRADEN AT THE UNIVERSITY
OF ARIZONA, SHOWING THAT
AUTISM-SPECIFIC CHANGES IN BRAIN
DEVELOPMENT MAY CONTINUE BEYOND
CHILDHOOD.
THE STUD LILI IS A CROEN THAT I
MENTIONED EARLIER THAT SUGGESTED
HIGH RATES OF PARKINSON'S IN
AUTISTIC ADULTS WENT A STEP
FURTHER IN THEIR REVIEW OF THE
MEDICAL RECORDS OF A LARGE
HEALTHCARE SYSTEM.
IN ADDITION TO HIGH RATES OF
PARKINSON'S DISEASE, THEY ALSO
FOUND THAT THERE WAS AN INCREASE
IN AUTISTIC ADULTS IN MANY
MEDICAL AND PSYCHIATRIC
CONDITIONS, INCLUDING
HYPERTENSION, OBESITY, DIABETES
AND SLEEP PROBLEMS.
A FINDING THAT HAS NOW BEEN
REPLICATED AND EXTENDED BY
OTHERS.
SO THE QUESTION BECOMES WHY IS
THIS HAPPENING?
IT'S TEMPTING TO ASCRIBE THIS TO
A COMMON UNDERSTANDABLE CAUSE.
AUTISTIC PEOPLE OFTEN DON'T GET
ADEQUATE CLINICAL SERVICES, THEY
OFTEN HAVE COMMUNICATION
DEFICITS THAT UNDOUBTEDLY LEAD
TO UNDERREPORTING OF SYMPTOMS,
AND LESS THAN ADEQUATE
PREVENTIVE CARE, OR MAYBE THIS
IS ATTRIBUTABLE TO LIFESTYLE
FACTORS LIKE DIET AND EXERCISE.
ALL OF THESE ARE IMPORTANT
TARGETS FOR INTERVENTION AND
POLICY THAT REMAIN TO BE
DEVELOPED FOR THIS POPULATION.
BUT THE CORRECT ANSWER IS THAT
WE DON'T KNOW IF THOSE ARE THE
EXPLANATIONS.
HIGH RATES OF PARKINSON'S MAY BE
DUE TO UNDERLYING BIOLOGY, JUST
AS WE SEE IN DOWN SYNDROME.
OTHER OUTCOMES MAY BE A
COMBINATION OF FACTORS.
COMPLICATING THIS FURTHER IS THE
FACT THAT WHILE WE CALL AUTISM
ONE THING, AUTISM SPECTRUM
DISORDER, WE KNOW THAT IT IS NOT
ONE THING, AND THAT THE CAUSES
ARE HETEROGENEOUS.
IT ALSO POSSIBLE THAT HIGH RATES
OF PARKINSON'S MAY BE DUE TO
MECHANISMS THAT ARE DIFFERENT
FROM PARKINSON'S IN THE
NON-AUTISTIC POPULATION.
WE JUST FRANKLY DO NOT KNOW.
WE NEED TO UNDERSTAND ALL OF
THESE THINGS IN ORDER TO DEVELOP
APPROPRIATE, PREVENTIVE AND
CONCURRENT INTERVENTIONS, AND
THEN TO TRAIN THE WORKFORCE TO
PROVIDE SPECIALIZED CARE.
SO GOING BEYOND THOUGHTS ABOUT
CAUSATION, WE NEED TO APPRECIATE
THE EXPERIENCE OF HAVING MEDICAL
AND PSYCHIATRIC PROBLEMS COMMON
IN THE AGING POPULATION IN
SOMEONE WITH AUTISM, AS IT IS
VERY LIKELY TO BE DIFFERENT THAN
SOMEONE WITHOUT AUTISM.
AND I THINK THE PANEL MADE THAT
POINT VERY CLEARLY.
WHAT ARE THE UNIQUE INTERACTIONS
BETWEEN THE CHARACTERISTICS OF
AUTISM AND THE PROBLEMS OF
AGING?
SO I WAS FORTUNATE ENOUGH TO
HAVE THESE VIGNETTES PUT
TOGETHER BY A COLLEAGUE OF MINE
WHO TAKES CARE OF OLDER ADULTS
WITH AUTISM IN PERTH, AUSTRALIA
AND I WANTED TO TAKE A MINUTE TO
READ THEM.
AN AUTISTIC MAN HAD AN ACTIVE
AND INDEPENDENT LIFE, ALTHOUGH
HE WAS NOTED TO GET UPSET WITH
ANY CHANGES IN HIS ROUTINE OR
ENVIRONMENT.
HIS ROUTINE INCLUDED MORNING
COFFEE AT A LOCAL RESTAURANT.
HOWEVER, WITH THE ONSET OF
PARKINSON'S DISEASE, SEVERE
TREMOR RESULTED IN HIS BEING
UNABLE TO DRINK HIS COFFEE
WITHOUT SPILLING IT, LEADING TO
BEHAVIOR OUTBURSTS AND
ULTIMATELY RESULTING IN A
SUBSTANTIAL DISRUPTION OF HIS
SCHEDULE AND NOTABLY DIMINISHED
LEVEL OF FUNCTION.
ANOTHER AUTISTIC MAN WITH HIGH
SUPPORT NEEDS LIVING IN A GROUP
HOME HAD ALWAYS BEEN ABLE TO
FEED AND DRESS HIMSELF.
WITH THE ONSET OF A SEVERE
TREMOR, HE BECAME FULLY
DEPENDENT ON CARE BY OTHERS,
LEADING TO CHRONIC IRRITABILITY,
FRUSTRATION, AND BEHAVIORAL
UPSETS THAT REQUIRED FREQUENT
INTERACTIONS BY HIS PHYSICIAN
AND GROUP HOME STAFF.
AND FINALLY, AN AUTISTIC WOMAN
DEVELOPED ACHY NE TICK-RIGID
PARKINSON'S DISEASE WITH POOR
BALANCE, FREQUENT FALLS AND
SHUFFLING GAIT.
AS A RESULT OF AN EXAGGERATED
FEAR OF FALLING, SHE BECAME
RECLUSIVE AND DEVELOPED
AGORAPHOBIA, FEAR OF OPEN
SPACES, AND PANIC ATTACKS, AND
HER LEVEL OF FUNCTION DIMINISHED
CONSIDERABLY.
SHE WAS MISDIAGNOSED BY A LOCAL
PHYSICIAN AS HAVING A LATE-ONSET
PSYCHOSIS.
LATER, TREATED WITH AN
ANXIOLYTIC MEDICATION, AN
ANTI-ANXIETY MEDICATION, SHE
RETURNED TO HER BASELINE LEVEL
OF FUNCTION.
SO IN 2010, I ORGANIZED A SMALL
TWO-DAY CONFERENCE AIMED AT
BEGINNING TO DEVELOP AN AGENDA
FOR RESEARCH ON OLDER ADULTS
WITH AUTISM.
THIS CONFERENCE INCLUDED TWO
SEPARATE GROUPS, A GROUP OF
AUTISM EXPERTS AND A GROUP OF
EXPERTS IN GERIATRICS.
AS THERE ARE BY AND LARGE NO
CLINICIANS OR RESEARCHERS WHO
ARE EXPERT IN BOTH.
TO UNDERSCORE THIS POINT, THERE
ARE GERIATRIC MEDICINE AND
GERIATRIC PSYCHIATRY PROGRAMS IN
EVERY UNIVERSITY IN THE COUNTRY
BUT IT WOULD BE EXTREMELY
UNLIKELY TO FIND EXPERTS
SPECIALIZING IN AUTISM IN ANY OF
THESE PROGRAMS.
A REVERSE OF THIS ISSUE IS MOST
CLINICIANS AND RESEARCHES
WORKING ON AUTISM TYPICALLY
STARTED WITH A FOCUS ON
CHILDREN, AND HAVE NO EXPERTISE
IN CARING FOR OR CONDUCTING
RESEARCH ON OLDER ADULTS.
WE ALSO BROUGHT TOGETHER EXPERTS
ACROSS MULTIPLE DISCIPLINES FROM
THE BIOLOGY OF AGING TO
LONG-TERM CARE, BASIC SCIENTISTS
TO POLICY MAKERS.
WHEN YOU BEGIN TO THINK ABOUT
THE SCOPE OF THE PROBLEM, YOU
QUICKLY REALIZE THIS BREADTH OF
EXPERTISE IS REQUIRED.
THERE'S NOT ENOUGH TIME TO GO
INTO THE RECOMMENDATIONS THAT
CAME OUT OF THIS MEETING, BUTLY
END BY NOTING THAT THE GROUP
RECOMMENDED THE NEED FOR THE
DEVELOPMENT OF SCREENING,
DIAGNOSIS AND ASSESSMENT TOOLS
AS THE VAST MAJORITY OF OUR
INSTRUMENTS ARE FOR CHILDREN AND
IN PARTICULAR NOT DEVELOPED TO
IDENTIFY DECLINING COGNITIVE
ABILITIES IN OLDER AGE OR SCREEN
AND DIAGNOSE AUTISM IN
60-YEAR-OLDS.
THERE'S A CLEAR NEED FOR A LARGE
SCALE LONGITUDINAL STUDY ON THE
ORDER OF THE CURRENT ADOLESCENT
BRAIN COGNITIVE DEVELOPMENT OR
ABCD STUDY, A LONGITUDINAL STUDY
OF DEVELOPMENT ACROSS
ADOLESCENCE.
AS YOU WILL SEE IN MARSHA'S
PRESENTATION, DEVELOPMENT IN
OLDER AGE AND AUTISM IS
NON-LINEAR, AND THEREFORE
REQUIRES STUDY USING
LONGITUDINAL METHODS.
BUT WE ALSO CANNOT WAIT FOR 20
YEARS FOR THOSE RESULTS.
WE NEED CROSS-SECTIONAL STUDIES
OF OLDER ADULTS TO CHARACTERIZE
THEIR PROBLEMS AND IDENTIFY
SOLUTIONS SOONER.
WE CANNOT MAKE ASSUMPTIONS ABOUT
CAUSES.
THERE IS A NEED TO EXPLORE THE
BIOLOGY OF AGING, AS WELL AS THE
IMPACT OF FACTORS SUCH AS
ENVIRONMENT, EXPERIENCE AND
LIFESTYLE.
WE NEED TO FIRST UNDERSTAND AND
THEN DEVELOP SERVICES,
INTERVENTIONS, PREDICTIVE
MEASURES AND PREVENTIVE
INTERVENTIONS AND STRATEGIES FOR
LONG-TERM CARE THAT DO NOT
CURRENTLY EXIST.
AND FINALLY, WE NEED TO TRAIN
THE WORKFORCE AND BUILD CAPACITY
IN TRAINING RESEARCH AND
CLINICAL CARE.
SO LET ME END AND PASS THIS
MICROPHONE TO MY COLLEAGUE,
MARSHA MAILICK, WHO WILL TELL
YOU ABOUT HER WORK ON A UNIQUE
LONGITUDINAL STUDY OF ADULTS
WITH AUTISM AND THEIR FAMILIES.
I THINK IT'S FAIR TO SAY THAT
OUR WORK, AND THAT OF A FEW
OTHERS, IS JUST BEGINNING TO
SCRATCH THE SURFACE TO POINT OUT
WHERE OUR KNOWLEDGE IS DEFICIENT
AND UNDERSCORE THE URGENT NEED
FOR MULTILEVEL RESEARCH AND
TRAINING TO ESTABLISH WHAT IS
CURRENTLY THE RELATIVELY
NON-EXISTENT CLINICAL AND
RESEARCH DISCIPLINES FOCUSING ON
AUTISM IN OLDER AGE.
THANK YOU.
>>GOOD AFTERNOON.
CAN YOU SEE ME, CAN YOU HEAR ME?
TERRIFIC.
SO THANK YOU ALL FOR THIS FOCUS
ON AGING AND AUTISM.
THANK YOU, JOE, FOR INCLUDING ME
AND FOR SUSAN DANIELS AS WELL
FOR INCLUDING ME.
IT'S BEEN AN INTEREST OF MINE
THAT BEGAN MANY YEARS AGO AND
I'D LIKE TO TELL YOU A LITTLE
ABOUT OUR RESEARCH ON
ADOLESCENTS AND -- A STUDY WE
BEGAN 22 YEARS AGO, STILL
ONGOING.
I'D LIKE TO POINT OUT OUR MAJOR
FUNDING HAS COME FROM THE
NATIONAL INSTITUTE OP AGING,
WHICH IS AN UNUSUAL SOURCE OF
FUNDING FOR PEOPLE -- WITH A
FOCUS ON PEOPLE WITH AUTISM.
SO YOU SEE DURING THE 22 YEARS,
WE HAVE CONDUCTED NINE ROUNDS OF
DATA COLLECTION ON A
HETEROGENEOUS COHORT WHO WERE AS
YOUNG AS 10 WHEN THE STUDY BEGAN
AND AS OLD AS 52 WHEN THE STUDY
BEGAN.
THIS LONGITUDINAL RESEARCH
DESIGN MAKES IT POSSIBLE TO LOOK
FORWARD ACROSS THE 22 YEARS TO
TRACK CHANGE PROSPECTIVELY IN
THIS COHORT, AND ALSO TO LOOK
BACKWARDS TO IDENTIFY PREDICTORS
OF CHANGE.
I'M GOING TO TELL YOU ABOUT
PREDICTORS IN MORTALITY IN THIS
COHORT.
HERE YOU CAN SEE SOME
CHARACTERISTICS OF OUR COHORT
WHEN THE STUDY BEGAN 22 YEARS
AGO, THREE QUARTERS WERE MALE,
TWO THIRDS WERE LIVING WITH
THEIR PARENTS, ABOUT THREE
QUARTERS WERE VERBAL.
95% WERE DIAGNOSED WITH AUTISTIC
DISORDER, WHICH WAS THE
TERMINOLOGY AND DIAGNOSTIC
PRACTICE OF THE TIME, BUT ALL
WOULD BE CONSIDERED TO HAVE
AUTISM TODAY.
70% HAD INTELLECTUAL DISABILITY
BUT I NOTE THAT THE HIGHEST IQ
IN OUR COHORT WAS 142, SO IT WAS
QUITE DIVERSE IN TERMS OF
COGNITIVE ABILITY.
HALF HAD CO-OCCURRING MENTAL
HEALTH DIAGNOSES, AND YOU CAN
SEE THAT ABOUT A THIRD HAD
EXCELLENT HEALTH, HALF HAD GOOD
HEALTH AND REMAINING WERE EITHER
FAIR OR POOR HEALTH.
SO WE LOOKED FORWARD OVER TWO
DECADES AT VARIOUS INDICATORS OF
AGING TO UNDERSTAND HOW AUTISTIC
ADULTS MIGHT CHANGE FROM
ADOLESCENTS TO MID LIFE AND THEN
FROM MID LIFE INTO OLDER AGE AND
BECAUSE WE HAD SUCH A WIDE AGE
RANGE AT THE BEGINNING OF OUR
STUDY, WE WERE ABLE TO ASK THESE
QUESTIONS.
IN THE INTEREST OF TIME, I'M
GOING TO TALK ABOUT ONE
INDICATOR OF ADULT DEVELOPMENT
IN AGING AND THAT IS ACTIVITIES
OF DAILY LIVING, ADLs.
ADLs ARE IMPORTANT BECAUSE
THEY'RE AN INDICATOR OF
FUNCTIONALITY IN ADULTHOOD.
THEY INCLUDE THE ABILITY TO TAKE
CARE OF ONE'S SELF TO PREPARE
MEALS TO KEEP YOUR HOUSE CLEAN
AND IN ORDER, MONEY MANAGEMENT
AND ADLs ARE COMMONLY MEASURED
IN ADULTS AND OLDER PEOPLE IN
THE GENERAL POPULATION AS A SIGN
OF AGING AND VULNERABILITY.
SO I'M GOING TO SHOW YOU
DIFFERENCES BETWEEN PEOPLE WHO
HAVE AUTISM WITH AND WITHOUT ID
AND THEN I'M GOING TO ASK
WHETHER THE SAME TREND IS
EVIDENT FOR PEOPLE WITH DOWN
SYNDROME WHO -- SO HERE YOU SEE
ACTIVITIES OF DAILY LIVING
MEASURED IN INDIVIDUALS WITH
AUTISM, THE BLUE LINE ARE
INDIVIDUALS WHO DO NOT HAVE
INTELLECTUAL DISABILITY, RED
LINE ARE INDIVIDUALS WITH
INTELLECTUAL DISABILITY AS WELL
AS AUTISM.
THEIR AGES ARE ALONG THE
HORIZONTAL ACCESS.
YOU CAN SEE PEOPLE AS YOUNG AS
10 YEARS OLD AND IN THEIR 60s
AS I MENTIONED EARLIER.
WHAT WE SEE WHICH IS REALLY
SURPRISING OR MAYBE NOT SO
SURPRISING IS THAT PEOPLE GAIN
ACTIVITIES OF DAILY LIVING
INDEPENDENCE AS THEY MOVE
THROUGH ADOLESCENCE INTO THE
EARLIER YEARS OF ADULTHOOD, BUT
AROUND AGE 35, THINGS CHANGE,
AND THERE'S A GRADUAL LOSS OF
INDEPENDENCE AND INDIVIDUALS,
BOTH WITHOUT INTELLECTUAL
DISABILITY WHO HAVE AUTISM AND
THOSE WHO ALSO HAVE INTELLECTUAL
DISABILITY.
THE NON-LINEAR OR -- NON-LINEAR
TREND IS EVEN MORE PRONOUNCED IN
TERMS OF THE GAINS OF ADL
INDEPENDENCE AND THE LOSS AMONG
THOSE WHO DO NOT HAVE
INTELLECTUAL DISABILITY.
NOW THE NEXT SLIDE SHOWS THE
SAME FUNCTION, THE NEXT SLIDE,
FOR INDIVIDUALS WITH DOWN
SYNDROME.
MEASURED ON THE SAME SCALE OF
ACTIVITY OF DAILY LIVING ALONG
THE SAME AGE RANGE.
AND WHAT WE SEE IS REALLY
DIFFERENT.
IT'S NOT A CURVILINEAR FUNCTION,
IT'S A LINEAR FUNCTION.
AND THE DIFFERENCES BETWEEN
THOSE WITH AUTISM AND THOSE WITH
DOWN SYNDROME RAISE MANY, MANY
QUESTIONS THAT WE DON'T HAVE
TIME TO DELVE INTO TODAY, BUT
THESE QUESTIONS WARRANT FUTURE
RESEARCH.
TAKE A LOOK AT THIS ONE.
IT'S PRETTY SURPRISING.
NEXT SLIDE.
PATTERNS WE'VE OBSERVED IN
STUDIES OF THOSE WITH DOWN
SYNDROME AND THOSE WITH FRAGILE
X SYNDROME WITH INDICATORS SUCH
AS ADLs RAISE A QUESTION
WHETHER MID LIFE IS A PERIOD OF
RISK FOR AUTISTIC ADULTS.
I ASKED THIS NOT ONLY BECAUSE OF
OUR OWN RESEARCH BUT ALSO
BECAUSE OTHER STUDIES OF
POPULATION-BASED COHORT HAVE
FOUND THAT ADULTS WITH ASD HAVE
A SHORTER THAN AVERAGE LIFESPAN
BY ABOUT 20 YEARS.
SO THIS IS REALLY REMARKABLE
DIFFERENCE IN THE TERMS OF AGING
AND CONSEQUENCES OF POSSIBLY
FACTORS THAT LEAD TO POOR HEALTH
DURING OLDER YEARS.
ONE OF THESE STUDIES WAS
CONDUCTED IN SWEDEN AND ANOTHER
IN MARSHFIELD, WISCONSIN.
THEY USE VERY, VERY DIFFERENT
METHODS, THEY BOTH FOUND ABOUT A
20-YEAR DIFFERENCE IN TERMS OF
AVERAGE LIFESPAN.
SO BASED ON THOSE TWO STUDIES,
WE DECIDED TO USE OUR DATA TO
LOOK BACK DURING THE STUDY
PERIOD AND IN 2019, WE DID AN
EXHAUSTIVE SEARCH BOTH IN TERMS
OF FAMILY DATA BUT ALSO PUBLICLY
AVAILABLE INFORMATION ABOUT
DEATH, NATIONAL DEATH INDEX.
26 OF THE ADULTS IN OUR STUDY
DIED DURING THE STUDY PERIOD,
WHICH IS A SMALL PORTION OF OUR
COHORT.
THIS IS A VERY SMALL SAMPLE.
BUT HERE YOU CAN SEE THE AGES AT
WHICH THEY DIED, AND ALSO THE
CAUSES OF DEATH.
I'M SHOWING YOU THE CAUSES OF
DEATH BECAUSE EVERY TIME I
REPORT ON THIS, PEOPLE SAY WHAT
DID THEY DIE.
YOU CAN SEE SOME OF THE CAUSES
OF DEATH WERE VERY COMMON IN THE
POPULATION: CARDIAC, CANCER,
OTHER CAUSES OF DEATH WERE MUCH
LESS COMMON SUCH AS MEDICATION
SIDE EFFECTS OR SEIZURES, THERE
WAS A PATTERN OF CHOKING AS WELL
AS ONE OF THE ACCIDENTS.
SO THIS -- BECAUSE WE HAD
FOLLOWED THEM BEFORE THEIR
DEATH, WE ARE ABLE TO ASK THE
QUESTION, WHAT ARE THE RISK
FACTORS THAT PREDICTED
MORTALITY, THAT DIFFERENTIATED
THOSE WHO DIED FROM THOSE WHO
SURVIVED.
SO NOT SURPRISINGLY, OLDER AGE
AND WORSE HEALTH PREDICTED
MORTALITY.
THERE IS NO NEWS THERE SEX,
MALES AND FEMALES WERE NOT
SIMILAR AND I.D. STATUS DID NOT
PREDICT MORTALITY, SO THOSE WITH
AND WITHOUT DISABILITY WERE
EQUALLY LIKELY TO HAVE DIED
WITHIN OUR STUDY PERIOD.
BUT ABOVE AND BEYOND CONTROLLING
FOR AGE, HEALTH, SEX AND I.D.
STATUS, WHAT WE FOUND WAS THAT
THERE ARE TWO FACTORS THAT
EMERGED IN OUR STATISTICAL
ANALYSIS.
INDEPENDENCE, ACTIVITIES OF
DAILY LIVING SKILLS AND THE
OTHER WAS IMPAIRMENTS IN SOCIAL
RECIPROCITY IS PREDICTIVE OF
EARLY CHILDHOOD.
FOR EVERY 11-POINT LOWER ON OUR
MEASURE OF ADL SKILLS THERE WAS
9% INCREASED RISK OF DEATH
DURING THE STUDY PERIOD AND FOR
EVERY ONE POINT HIGHER ON
IMPAIRMENTS DURING EARLY
CHILDHOOD THERE WAS 26%
INCREASED RISK OF DEATH DURING
THE STUDY PERIOD.
SO WE HAVE TO ASK A QUESTION
WHICH IS THE SAME QUESTION THAT
JOE HAS RAISED IN MANY OF THE
SPEAKERS ESPECIALLY DURING THE
LIVED EXPERIENCE PANEL HAVE
RAISED AS WELL, AND THAT IS
WHETHER THESE PATTERNS ARE DUE
TO BARRIERS IN HEALTHCARE AND
SERVICES, LIFESTYLE FACTORS,
WHICH EXIST, THERE'S NO DOUBT
ABOUT THOSE BARRIERS, OR ARE
SOME OF THE DIFFERENCES, SOME OF
THE FACTORS THAT EMERGE INHERENT
TO AUTISM?
OR SOME COMBINATION OF BOTH.
AND THESE ARE FACTORS THAT
REQUIRE ADDITIONAL RESEARCH, A
GREAT DEAL OF ADDITIONAL
RESEARCH WELL BEYOND OUR SMALL
SINGLE STUDY.
SO IT WOULD BE UNWISE AND
SKIPPING A VERY IMPORTANT TOPIC
IF I DIDN'T MENTION SOMETHING
ABOUT PARENTAL DEATH IN A STUDY
OF AGING AND AUTISM.
I HAVE INTERVIEWED AND
INTERACTED WITH HUNDREDS OF
FAMILIES WHO HAVE A SON OR
DAUGHTER WITH AUTISM, AND THE
MOST COMMON INTERACTION INVOLVES
THE QUESTION, WHAT WILL HAPPEN
TO HIM OR HER AFTER WE'RE GONE.
AND YOU HEARD COMMENTS ABOUT
THAT TODAY.
THIS FATHER SAID IN CARING FOR
HIM, FAMILY, FRIENDS AND
INSTITUTIONS HAVE FREQUENTLY LET
US DOWN, WE'RE ON OUR OWN WITH
HIM, THE GREATEST FEAR IS WHAT
HAPPENS WHEN WE'RE GONE.
WE DETERMINED THROUGH OUR
ONGOING STUDY, WHICH INCLUDED
FAMILY EVEN AFTER THE PRIMARY
SOURCE OF FAMILY SUPPORT WHO WAS
ALMOST ALWAYS THE MOTHER AFTER
SHE PASSED AWAY AND WE ASKED --
WE CHECKED WHO WAS THE PRIMARY
SOURCE OF FAMILY SUPPORT
SUBSEQUENTLY, IN 12 INSTANCES IT
WAS A SIBLING, IN FOUR, A
FATHER, BUT IN SIX OF THE 22
FAMILIES IN WHICH THERE WAS A
LOSS OF A MOTHER, THERE WAS NO
FAMILY MEMBER WHO WAS PROVIDING
ANY FAMILY SUPPORT FOR THE ALSO
AGING INDIVIDUAL WITH AUTISM.
ALL OF US NEED FAMILY SUPPORT
ACROSS THE LIFE COURSE, BUT
CERTAINLY IN OUR OLDER YEARS,
AND SO THE FACT THAT SIX OF THE
22 HAD NO FAMILY MEMBER SUPPORT,
IT'S A VERY IMPORTANT CONCERN.
WE ALSO DETERMINED WHERE THESE
ADULTS LIVED AFTER THEIR MOTHER
DIED.
13 WERE IN GROUP HOMES, ONE WITH
A FATHER, TWO WITH SIBLINGS.
FOUR PEOPLE LIVED INDEPENDENTLY,
TWO OF THOSE WITH SUPPORT.
ONE LISTED HIS RESIDENCE AS A
COLLEGE DORM AND WE HAD MISSING
DATA ON ONE MORE.
AGAIN, A VERY SMALL SNAPSHOT
STARTING FROM A COHORT AS LARGE
AS 406, BUT I WANTED TO SHARE
THAT WITH YOU TODAY.
SO TOWARD THE END OF MY
PRESENTATION IN THE NEXT SLIDE,
I'D LIKE TO SAY A FEW WORDS
ABOUT AN AGENDA FOR FUTURE
RESEARCH ON AGING AND AUTISM,
BUILDING ON JOE'S AGENDA AND NOT
REPEATING IT.
WE OBVIOUSLY NEED TO EXPAND THE
REACH OF OUR RESEARCH COHORTS
AND INCLUDE UNDERSERVED AND
DIVERSE POPULATIONS AND
LONGITUDINAL -- AS WELL AS
CROSS-SECTIONAL STUDIES OF MID
LIFE AND OLDER AUTISTIC ADULTS.
WE HAVE BEEN REMISS IN INCLUDING
DIVERSE POPULATIONS AS WE HAVE
BEGUN TO PUT OUR TOE IN THE
WATER IN THIS IMPORTANT AREA OF
RESEARCH.
IT'S REALLY IMPORTANT TO STUDY
HOW AUTISM AFFECTS AGING AND THE
LIVED EXPERIENCE PANEL SAID IT
FAR BETTER THAN I COULD EVER
RAISE THIS POINT.
BUT THE STRESS OF HAVING AUTISM,
THE GENETIC RISK, THE LIMITED
ACCESS TO HEALTHCARE, THE SOCIAL
ISOLATION, THE LONG TERM
POLYPHARMACY, THESE ARE ALL
IMPORTANT FACTORS TO MEASURE AS
WE THINK ABOUT RESEARCH IN THE
FUTURE THAT ADDRESSES THE LACK
OF RESEARCH ON AGING AND AUTISM.
HOW AUTISTIC INDIVIDUALS COPE
WITH AGING-RELATED LOSS AND
GRIEF IS AN UNTAPPED AREA OF
WORK THAT ALSO EMERGED IN THE
LIVED EXPERIENCE PANEL AND
CLEARLY WE NEED TO INCLUDE
MULTIPLE VOICES AS WE CRAFT THE
RESEARCH AGENDA GOING FORWARD.
THE ONE THING I THINK WE CAN ALL
AGREE UPON IS WE'VE ONLY JUST
BEGUN TO UNDERSTAND AGING AND
AUTISM, AND ALSO THIS LIFE STAGE
IS LIKELY TO BE AS COMPLEX AS
AUTISM IN EARLIER LIFE STAGES.
COMPLEXITIES ON TOP OF
COMPLEXITIES.
SO FOR MY LAST SLIDE, I'D LIKE
TO SAY A FEW ACKNOWLEDGMENTS AND
THANK YOUS CLEARLY TO THE
SEVERAL HUNDRED PARTICIPANTS IN
OUR STUDY AND MY CO-LEADERS OF
THE RESEARCH GOING FORWARD.
I'D LIKE TO ALSO LIST THE FORMER
MEMBERS OF OUR RESEARCH GROUP.
YOU KNOW SOME OF THEM, JULIE
TAYLOR, PAUL SHATTUCK EARLIER
TODAY.
RESEARCH WE'VE CONDUCTED ON
AGING AND AUTISM AND ALSO I'D
LIKE TO -- I'M VERY GRATEFUL TO
OUR FUNDING SOURCES, NIA AS WELL
AS NICHD, NIMH AND AUTISM
SPEAKS, BUT NIA WAS WITH US FROM
THE VERY BEGINNING BECAUSE THEY
SAW THIS AS A TWO-GENERATION
AGING FAMILY AS THE PARENTS AGE,
THE SIBLINGS AGE, AND THE
INDIVIDUALS ON THE AUTISM
SPECTRUM AGE.
WE HAVE TO THINK ABOUT THIS
TOGETHER.
SO THANK YOU ALL VERY MUCH.
>>THANK YOU VERY MUCH
DR. MAILICK, DR. PIVEN, FOR
GIVING THUS REALLY WONDERFUL
OVERVIEW.
WE NOW HERALD THE VOICES OF
LIVED EXPERIENCE, BOTH WITH
INDIVIDUALS WITH AUTISM AND
CAREGIVERS AND FAMILY MEMBERS OF
THOSE INDIVIDUALS, AS WELL AS
SOME IDEA OF THE STATE OF THE
SCIENCE ON ISSUES AND CHALLENGES
FOR INDIVIDUALS AND FAMILIES OF
INDIVIDUALS WITH AUTISM.
NOW IS AN OPPORTUNITY FOR THOSE
OF US AS A COMMITTEE TO ASK
QUESTIONS TQUESTIONS.
PLEASE FEEL FREE TO SUBMIT YOUR
COMMENDS TO THE "SEND COMMENTS"
COHOST AND ALSO TO RAISE YOUR
HAND IF YOU'D LIKE TO BRING
THOSE COMMENTS TO LIGHT, PLEASE.
DENA, GO RIGHT AHEAD.
>>THANK YOU.
I'M SORRY, CAN WE TAKE THAT
SLIDE DOWN AND PUT THE SCREEN UP
SO WE CAN SEE PEOPLE?
>>THAT WOULD BE GREAT.
YEAH, LET'S DO THAT.
>>I JUST WANTED TO SAY,
DR. MAILICK, I APPRECIATE YOUR
WORK.
I'VE BEEN FOLLOWING YOU FOR SO
LONG.
BUT I WANTED TO ASK THIS
QUESTION.
I HAVE CONCERNS THAT MANY OF THE
STUDENTS WHO ARE DEGREE-SEEKING,
WHO MAY BE CLAWING THEIR WAY TO
A BACHELOR'S DEGREE OR CLAWING
THEIR WAY THROUGH A HIGH SCHOOL
DIPLOMA ARE SIMULTANEOUSLY BEING
DENIED ACCESS TO INDEPENDENT
LIVING SKILL TRAINING AND
SUPPORT.
SO WE OFTEN SEE THESE SAME
STUDENTS GO AWAY TO COLLEGE AND
CRASH AND BURN IN THE FIRST
SEMESTER OR BECOME SUICIDAL
BECAUSE THEY'RE NOT COPING OR,
YOU KNOW, IN ALL OF THESE
DYNAMICS, WHEN THE PARENT IS
GONE AND THE PARENT HAS BEEN
DOING EVERYTHING FOR THEM,
THEY'RE NOT EQUIPPED BECAUSE
PEOPLE JUST EXPECT THEM TO BE
ABLE TO FIGURE IT OUT.
AND I CAN TELL YOU FROM CHATTING
WITH SOME OF MY FRIENDS TODAY,
ALL OF US HAVE SECRET THINGS
THAT WE CAN'T EVEN CONVEY
PUBLICLY BECAUSE PEOPLE WILL
JUDGE US FOR IT.
WHICH ARE ACTUALLY GAPS IN THESE
SKILLSETS, RIGHT?
WHETHER IT'S BEING ABLE TO CALL
A DOCTOR, KNOW WHEN YOUR MEDS
ARE GOING TO EXPIRE, KEEP YOUR
HOUSE CLEAN, FEED YOURSELF.
CAN YOU COMMENT ON WHAT YOU'RE
OBSERVING IN YOUR RESEARCH
RELATED TO HOW THAT'S LOOKING?
>>YOU RAISE A VERY, VERY GOOD
POINT, AND THANK YOU FOR RAISING
IT.
I THINK WHAT WE HAVE DONE IS
DIVIDED THE POPULATION WITH
AUTISM INTO TWO GROUPS WHEN THEY
ARE IN HIGH SCHOOL.
THOSE WHO ARE GOING TO GO ON TO
COLLEGE, WE HOPE WILL GO ON TO
COLLEGE AND THOSE WHO WILL NOT.
AND IT'S OFTEN DIVIDED BY I.D.,
BUT IT SHOULDN'T BE.
AND THOSE WHO ARE DIVIDED INTO
THE SECOND GROUP, WHO ARE NOT
EXPECTED TO GO ON TO COLLEGE,
THEY GET REALLY GOOD TRAINING IN
MAINTAINING OR DEVELOPING THEIR
ADL SKILLS.
AND THEY OFTEN HAVE CAPACITIES
AND EXPERIENCES THAT WE DO NOT
PROVIDE TO THOSE WHO ARE ON THE
ACADEMIC TRACK.
SO THIS ENDS UP LEADING TO ALL
THE THINGS YOU JUST SAID, YOU
KNOW FAR BETTER THAN I DO ABOUT
THE RANGE OF PROBLEMS THAT
INDIVIDUALS HAVE WHO HAVE GREAT
STRENGTHS, AS MANY ON THE AUTISM
SPECTRUM DO, AS WELL AS, YOU
KNOW, I HAVE NEVER REALLY
THOUGHT OF THEM AS SECRET
WEAKNESSES BUT I CAN SEE WHAT
YOU MEAN BY THAT.
SO I THINK IF WE DON'T DIVIDE
THE WORLD UP INTO SO MANY
UNREALISTIC PIECES AND WE THINK
ABOUT THE IMPORTANCE OF WHAT --
I MEAN, AGAIN, NOT TO OVERSTATE
THE IMPORTANCE OF OUR STUDY AS
JUST ONE STUDY, BUT THAT
CURVILINEAR RELATIONSHIP BETWEEN
AGE AND ADL SKILLS HAS GOT ME
VERY WORRIED ABOUT AUTISM AS
INDIVIDUALS AS THEY MOVE INTO
MID LIFE AND OLDER AGE.
>>THANK YOU, DR. MAILICK, THANK
YOU, DENA, FOR THE QUESTION.
I BELIEVE STEVEN HAS A COMMENT
OR QUESTION THAT HE'D LIKE TO
READ.
STEVEN.
>I THINK YOU'RE MUTED.
CAN'T QUITE HEAR YOU.
>>HELLO?
>>NOW I CAN HEAR YOU.
GO RIGHT AHEAD.
>>THANKS.
THIS MESSAGE IS FOR MORENIKE.
I'M FEELING A LITTLE SHEEPISH
MAKING THIS REMARK BECAUSE OF
SOME THAT HAS BEEN SHARED ABOUT
THERE NEEDING TO BE MORE EQUITY
IN TERMS OF IACC MEMBERS'
ABILITY TO CONTRIBUTE AT
MEETINGS.
I WILL TRY TO BE CONCISE.
FIRST I WANT TO THANK DR. HARRIS
FOR SHARING YOUR PERSPECTIVE AS
AN ADULT LIVING AT THE
INTERSECTION OF DISABILITY, RACE
AND GENDER.
SO MUCH OF WHAT YOU SHARED
RESONATED WITH ME AND
ILLUSTRATES THE REALITY OF MANY
INDIVIDUALS FROM OUR COMMUNITY.
I ALSO APPRECIATE RUTH JONES'
OVERVIEW OF HER FAMILY'S
EXPERIENCES AS A BLACK FAMILY IN
THE SOUTHEAST DURING A TIME THAT
LITTLE WAS KNOWN ABOUT AUTISM
AND ESPECIALLY THE
COMMUNITY-BASED HOUSING AND
SENSORY TOOLS PETER HAS ACCESSED
AS A BLACK OLDER ADULT ON THE
SPECTRUM WITH INTELLECTUAL
DISABILITY WHO IS MINIMALLY
SPEAKING WHO STRUGGLES WITH
ANXIETY.
THE HEALTH, HYGIENE, FINANCIAL
AND TRAUMA-RELATED CIRCUMSTANCES
YOU'VE SUMMARIZED ARE OF EXTREME
IMPORTANCE AND NEED TO BE
HIGHLIGHTED.
MY AUTISTIC CHILD ALSO HAD A
PROLAPSED RECTUM AND WAS UNABLE
TO COMMUNICATE DISCOMFORT USING
WORDS.
FURTHERMORE, AS I AM AN AUTISTIC
ADULT WHO HAS RECENTLY BEEN
DIAGNOSED WITH YOUNG ONSET
DEMENTIA, I APPRECIATE YOU
BRINGING THAT UP AS WELL.
THERE IS CURRENTLY MINIMAL
INFORMATION AND FEW RESOURCES
THAT ADDRESS THESE REALITIES.
ACQUIRED NEUROCOGNITIVE DI NEURS
SUS AS NEURODEGENERATIVE
DISABILITY SUCH AS MINE NEED TO
BE MORE ADEQUATELY INCORPORATED
INTO NEURODIVERSITY, AS RIGHT
NOW IT IS CONSPICUOUSLY ABSENT
AND HIGHLY STIGMATIZED.
JOHN AND LISA'S REMARKS ABOUT
SUICIDALITY, ANXIETY AND SOCIAL
ISOLATION AND SUE SWEZEY'S
COMMENTS ABOUT INADEQUATE
RESOURCES FOR OLDER ADULTS WERE
SIGNIFICANT AS WELL.
ALTHOUGH I THINK IT'S IMPORTANT
TO NOTE IN RESPONSE TO SUE'S
STATEMENT THAT THOUGH NOT ALL
QUITE A NUMBER OF AUTISTIC
INDIVIDUALS WHO MIGHT BE
PERCEIVED EXTERNALLY AS HIGH
ACHIEVING ARE INDEED VERY
FAMILIAR WITH AUTISTIC PEOPLE
WHO ARE NON-SPEAKING AND/OR HAVE
INTELLECTUAL DISABILITIES AND/OR
HIGHER SUPPORT NEEDS GIVEN THAT
MANY OF THESE INDIVIDUALS,
PEOPLE WHO SOME DESCRIBE AS
PROFOUNDLY AUTISTIC, ARE OFTEN
OUR SIBLINGS AND OUR CHILDREN.
OF NOTE, THOUGH, THAT MIGHT NOT
HAVE BEEN THE CASE PREVIOUSLY,
THIS IS TRUE OF NEARLY EVERY ONE
OF THE CURRENT AUTISTIC
INDIVIDUALS ON THIS VERY IACC
COMMITTEE WHO CARE AND SEEK TO
ADVOCATE FOR THE NEEDS OF OUR
LOVED ONES IN OUR COLLECTIVE
COMMUNITY ACROSS THE ENTIRE
AUTISM SPECTRUM.
LASTLY, THANK YOU TO DR. PIVEN
AND DR. MAILICK AS WELL FOR THE
IMPORTANT RESEARCH AND THE
SOBERING OBSERVATIONS YOU
PROVIDED.
>>THANK YOU.
ARE THERE OTHER QUESTIONS OR
COMMENTS FROM OTHER MEMBERS OF
THE IACC?
I DON'T HAVE ANY HANDS RAISED
JUST NOW.
I MIGHT OFFER A QUESTION MYSELF,
IF NO ONE IS -- LET'S GO WITH
JENNIFER JOHNSON FIRST.
>>FIRST I JUST WANT TO THANK
EVERYONE FOR THE REMARKS AND
PRESENTATIONS THAT THEY MADE.
IT WAS REALLY HELPFUL TO HEAR
FROM EVERYONE AND HEAR ABOUT THE
WORK THAT'S BEING DONE.
WE AT THE ADMINISTRATION FOR
COMMUNITY LIVING HAVE BEEN DOING
SOME WORK IN THIS AREA GIVEN THE
NEED AS WAS WELL DEMONSTRATED IN
THIS PANEL FOR ADDRESSING PEOPLE
DID DISABILITIES INCLUDING
PEOPLE WITH AUTISM AS THEY AGE.
WE HAVE SOME PROJECTS THAT WE
FUNDED, ONE LAST YEAR THAT WE
FUNDED TO BRIDGE AGING AND
DISABILITY SERVICES WITHIN THE
ADMINISTRATION FOR COMMUNITY
LIVING.
WE DO FUND -- WE HAVE THE OLDER
AMERICANS ACT THAT WE ADMINISTER
UNDER THE ADMINISTRATION ON
AGING THAT PROVIDES FUNDING TO
STATE UNITS ON AGING, AND THEY
ALSO THEN TURN THAT AROUND AND
PROVIDE FUNDING TO AREA AGENCIES
ON AGING.
AND SO THERE IS A NATIONWIDE
NETWORK OF AGING PROGRAMS.
WE ALSO PROVIDE FUNDING TO AGING
DISABILITY RESOURCE CENTERS, AND
WHILE THEY DON'T NECESSARILY
HAVE A LOT OF EXPERTISE AND
EXPERIENCE OBSERVING AUTISTIC
INDIVIDUALS, OUR PROJECT THAT WE
FUNDED IS INTENDED TO BETTER
BUILD THAT CAPACITY WITHIN THE
AGING NETWORK TO SUPPORT PEOPLE
WITH DISABILITIES INCLUDING
AUTISTIC INDIVIDUALS WITH A
PARTICULAR FOCUS ON SUPPORT FOR
FAMILIES AS WELL, AS THEY ARE
AGING.
I APPRECIATED THE POINT THAT WAS
MADE IN ONE OF THE SMALL
RESEARCH STUDIES ABOUT THE CARE
THAT'S OFTEN GIVEN BY MOTHERS
AND OTHER FAMILIES BUT MOTHERS
DO CERTAINLY BEAR THE -- MOST OF
THE RESPONSIBILITY FOR THEIR
ADULT CHILDREN WITH
DISABILITIES.
SO AS WE'RE THINKING ABOUT NOT
ONLY A RESEARCH AGENDA AROUND
AGING ADULTS WITH AUTISM, I HOPE
THAT WE ALSO THINK ABOUT THE
SERVICE AGENDA THAT WE NEED FOR
ADULTS WITH AUTISM, AND AGAIN,
HOW ARE AGING NETWORKS WITHIN
THE ADMINISTRATION FOR COMMUNITY
LIVING CAN BE A PART OF THAT
CONVERSATION AND THE WORK THAT
WE'RE DOING TO SUPPORT BUILDING
THEIR CAPACITY TO SERVE ADULTS
WITH DISABILITIES.
>>THANK YOU, JENNIFER.
I SAW HARI HAD HIS HAND UP FOR A
MOMENT BUT IT'S BACK DOWN AGAIN.
I DIDN'T KNOW IF YOU WANTED TO
MAKE A COMMENT?
LOOKS LIKE STEVEN -- GO AHEAD,
STEVEN.
>>I HAVE A COMMENT FROM HARI.
HE SAYS THERE ARE LIFELONG
PEOPLE LIKE ME WHO HAVE A LEG IN
BOTH FIELDS.
IN POST GRAD, BUT ALSO STILL
NEED LIFELONG SUPPORTS,
ESPECIALLY IN ADL.
ADD TO THAT WE ALREADY HAVE
MOVEMENT ISSUES FROM YOUNG AGE,
POSSIBLY FROM GREATER RISK FOR
PARKINSONISM, AND MORE AS WE
AGE.
HOW WILL THIS BE ACCOUNTED FOR?
BECAUSE IT SEEMS LIKE THE
THINKING IS ONE OR THE OTHER.
>>I DON'T KNOW IF EITHER OF OUR
SCIENTISTS WOULD LIKE TO ANSWER
THAT QUESTION REGARDING
INDIVIDUALS WHO COME IN TO
ADULTHOOD WITH PRE-EXISTING
MOVEMENT CONDITIONS.
>>I'M TRYING TO UNDO MY VIDEO
HERE.
WELL, I'LL JUST TALK WITHOUT THE
VIDEO.
I MEAN, I THINK, AGAIN, THE
ANSWER IS H, WE DON'T KNOW.
THE KEY POINT HERE IS WE CAN'T
MAKE ANY ASSUMPTIONS ABOUT THIS.
I THINK, YOU KNOW, IT'S SORT OF
ALL OF THE ABOVE.
I MEAN, I THINK THAT IT'S VERY
POSSIBLE THAT WHAT WE'RE SEEING
IS SOMETHING DIFFERENT FROM, YOU
KNOW, SORT OF THE USUAL WHAT WE
SEE IN PARKINSON'S.
WE HAVE LIFE EXPERIENCES THAT
CAN CONTRIBUTE.
MARSHA HAD A GREAT SLIDE ON
THAT.
STRESS.
ONE OF THE THINGS SHE DIDN'T
MENTION WAS SENSORY PROBLEMS AND
THE SORT OF ACCUMULATION OF THAT
ON OLDER AGE, SENSORY PROBLEMS
IMPACTING OUTCOMES ON COGNITIVE
FUNCTION.
SO I THINK WHAT I CAN SAY THE
MAIN POINT OF OUR TWO SHORT
TALKS IS TO BASICALLY JUST SAY,
YOU KNOW, THERE'S A LOT OF STUFF
HERE THAT NEEDS TO BE STUDIED.
AND THESE STUDIES THAT HAVE BEEN
DONE ARE REALLY LITERALLY JUST
SCRATCHING THE SURFACE.
THEY'RE REALLY JUST MEANT TO
POINT OUT THAT THIS IS MORE THAN
JUST, YOU KNOW, MY KNEES ARE
SORE BECAUSE I'M GETTING OLD
KIND OF AGING.
THERE ARE MANY OTHER THINGS
GOING ON HERE.
SO I DON'T HAVE A REAL GOOD
ANSWER TO HARI, TO ADDRESS HIS
COMMENT, OTHER THAN TO SAY, YOU
KNOW, WE NEED TO ANSWER THESE
QUESTIONS.
WE NEED TO DO THE RESEARCH.
>>SO I CAN JUST ADD MY POINT TO
THAT.
JOE, YOU MENTIONED THE NEED FOR
BRINGING GERIATRICS INTO OUR
FIELD, PROVIDING TRAINING AND
BRINGING GERIATRICS TO
INDIVIDUALS WHO ARE CONCERNED
ABOUT AUTISM.
ONE OF THE MOST PREVALENT
THEORIES WITHIN GERIATRICS AND
GERIATRIC MEDICINE IS CUMULATIVE
ADVANTAGE AND CUMULATIVE
DISADVANTAGE THEORY, AND I THINK
THE IDEA OF COMING INTO
ADULTHOOD WITH MOVEMENT PROBLEMS
AND ADL LIMITATIONS, I THINK
SPEAKS TO THE IDEA OF THE
POSSIBILITY OF CUMULATIVE
DISADVANTAGE WHICH ONLY GETS
MORE CHALLENGING OVER TIME.
WE HEARD ABOUT INCREASES IN
PSYCHIATRIC SYMPTOMS, INCREASES
IN ANXIETY, DECREASES IN
ADAPTIVE COPING, SHRINKING OF
NETWORKS, ALL OF THOSE THINGS
TOGETHER WILL INTERACT.
AS GERIATRICIANS HAVE SHOWN IN
THE GENERAL POPULATION, AND EVEN
MORE SO WITHIN OUR COMMUNITY OF
AUTISM.
>>THANK YOU FOR THAT.
SEEING THAT THERE ARE NO OTHER
QUESTIONS UP, I TAKE IT BACK.
JULIE, PLEASE GO AHEAD.
>>THIS WAS SUCH AN INTERESTING
PANEL.
I REALLY APPRECIATED HEARING
ABOUT THE LIVED EXPERIENCES AND
ALSO KIND OF SEEING WHERE WE'RE
AT WITH THE RESEARCH, AND I
WOULD LOVE TO HEAR -- MAYBE JOE
IS THE PERSON BEST QUALIFIED TO
TALK ABOUT THIS.
SOMETHING I'VE BEEN THINKING
ABOUT A LOT WHEN YOU'RE THINKING
ABOUT AGING ISSUES IS HOW DO YOU
FIND OLDER ADULTS ON THE AUTISM
SPECTRUM?
IIF SOMEBODY IS IN THEIR SICK
TIs NOW, THAT MEANS THEY WERE
CHILDREN 50 YEARS AGO WHEN
PEOPLE WEREN'T GET I A LOT OF --
WE WEREN'T SEEING AS MANY AUTISM
DIAGNOSES.
I WOULD ENVISION BUT I MIGHT BE
WRONG ABOUT THIS, FINDING
SAMPLES OF OLDER ADULTS WHO HAVE
AN AUTISM DIAGNOSIS OR WHO MAYBE
EVEN IDENTIFY AS BEING ON THE
AUTISM SPECTRUM MIGHT BE TRICKY.
40 YEARS FROM NOW, MAYBE NOT SO
MUCH AS WE'RE SEEING, YOU KNOW,
PEOPLE GETTING DIAGNOSED MORE
OFTEN, BUT I'M SORT OF -- I
HAVEN'T HAD A CHANCE TO TALK
WITH SOMEBODY ABOUT KIND OF HOW
THAT WORKS WHEN YOU'RE DOING
SAMPLES AND RECRUITING OLDER
ADULT SAMPLES, CAN YOU FIND
AUTISTIC OLDER ADULTS?
HOW CHALLENGING WAS THAT FOR
YOU, JOE, AND WHAT ARE
RECOMMENDATIONS IN TERMS OF EVEN
TRYING TO BUILD SAMPLES OF OLDER
ADULTS WHO WOULD HAVE BEEN LESS
LIKELY TO GET DIAGNOSES AT LEAST
WHEN THEY WERE CHILDREN?
>>WELL, IT'S A HUGE PROBLEM.
I THINK THERE ARE A NUMBER OF
KIND OF EASY TO IGNORE
METHODOLOGIC ISSUES, BUT THIS IS
ONE OF THEM.
THERE'S A HUGE ASCERTAINMENT
BIAS IN ANY STUDY YOU DO AT THIS
AGE.
I WENT LOOKING IN NORTH CAROLINA
FOR FOLKS OVER 60, AND IT TOOK
ME A COUPLE YEARS, REALLY, TO
FIND A SMALL GROUP OF 20, AND
THEY WERE BY AND LARGE THE
INDIVIDUALS THAT WERE IN
RESIDENTIAL FACILITIES AND HAD
GOTTEN DIAGNOSED PROBABLY FOR
OTHER REASONS VERY YOUNG, AND
SO, YEAH, I THINK THAT'S GOING
TO BE A BIG PROBLEM, BUT YOU
KNOW, WE KNOW, WE KNOW ACTUALLY
FROM DAVID MANDELL'S PAPER A FEW
YEARS BACK WHEN HE LOOKED AT A
PSYCHIATRIC HOSPITAL, A STATE
HOSPITAL IN PENNSYLVANIA WHERE
HE SCREENED THE GENERAL
POPULATION OF THE HOSPITAL FOR
AUTISM AND FOUND THAT 10% HAD
AUTISM AND IT HADN'T BEEN
DETECTED.
SO I THINK WE CAN JUST ASSUME
THERE'S JUST DRAMATIC
UNDERRECOGNITION MISDIAGNOSIS IN
THIS GROUP.
SO THAT'S OUR CURRENT PROBLEM,
IS THAT WE DON'T EVEN KNOW WHERE
THEY ARE, AND -- BUT THEN OUR
FUTURE PROBLEM IS THEY'RE COMING
TOWARDS US.
IT'S THE PIG IN THE PYTHON, SO
TO SPEAK.
HE WITH DON'T HAVE A POPULATION
TO SORT OF DEVELOP OUR KNOWLEDGE
BASE ON, BUT WE NEED TO GET
STARTED.
I THINK THE OTHER QUESTION THAT
THIS BRINGS UP IS SORT OF WHAT
IS OLDER AGE IN AUTISM?
YOU KNOW, I THINK, YOU KNOW, WE
DEFINE IT BY A LOT OF DIFFERENT
THINGS, BUT I THINK FOR THIS
PROCESS AND THIS KIND OF A
STUDY, WE CAN'T REALLY JUST
START WITH 60, 70 AND
80-YEAR-OLDS.
WE NEED TO START WITH 40 AND
50-YEAR-OLDS AND FOLLOW THEM
FORWARD TO TRY AND GET A HANDLE
ON THAT.
>>SPEAKING TO THAT, JOE, OF
COURSE, ARE THE GRAPHS THAT --
THE NON-LINEAR GRAPHS THAT SHOW
DECLINE IN -- DECLINE IN DAILY
FUNCTIONING THAT BEGINS DECADES
EARLIER THAN 70.
SO I THINK THAT ALSO BACKS UP
THAT NOTION THAT WE REALLY NEED
TO APPROACH FROM A RESEARCH
PERSPECTIVE, ANYWAY, AS YOU
MENTIONED, WE NEED TO APPROACH
THIS FROM A SLIGHTLY EARLIER
TIME FRAME BUT ALSO LONGITUDINAL
TIME FRAME TO BE ABLE TO FOLLOW
INDIVIDUALS OVER TIME.
I ALSO LIKE THAT YOU POINTED OUT
THAT THAT DOESN'T MEAN WE DON'T
NEED RESEARCH -- THAT CAN IMPACT
PEOPLE NOW THAT WON'T TAKE THOSE
DECADES, SO I THINK BOTH THOSE
POINTS ARE WELL TAKEN.
WE HAVE TWO MORE PEOPLE WITH
RAISED HANDS AND THEN I THINK
WE'LL PROBABLY BE WISE TO MOVE
ON.
SO WHAT I WOULD SAY IF ANYONE
ELSE HAS ANY COMMENTS OR
QUESTIONS, PLEASE RAISE YOUR
HANDS NOW SO WE CAN BUDGET THE
TIME ACCORDINGLY BUT IN THE
MEANTIME, DENA, WHY DON'T YOU GO
AHEAD.
>>I'M GOING TO FIRST DEFER TO
JOHN, BECAUSE HE HAS A COMMENT,
BUT I WOULD SAY TOO, I THINK THE
SCIENTIFIC COMMUNITY IS REALLY
WEAK ABOUT USING GATE KEEPERS,
YOU KNOW, WE HAD -- I HAD A
WOMEN'S SUPPORT GROUP LAST
NIGHT, 22 ATTENDEES.
EIGHT OF THEM WERE AT LEAST OVER
45.
AND I THINK IF YOU START LOOKING
AT THE AUTISTIC LEADERSHIP,
WE'LL BE ABLE TO FIND YOU AS BIG
A SAMPLE AS YOU WANT.
>>THAT'S A GOOD POINT, REACHING
OUT TO THOSE -- TO OUR
COMMUNITY-BASED ORGANIZATIONS.
I'M SORRY, I DON'T HAVE JOHN'S
HAND UP, BUT JOHN, DID YOU WANT
TO MAKE A POINT?
>>UM, YES, I DID.
>>OKAY.
GO AHEAD.
I CAN HEAR YOU.
>>OKAY.
SO LOOKING AT THE SLIDES THAT
THE SCIENTISTS PUT UP, THEY
TALKED ABOUT MORTALITY NOT BEING
DIFFERENT FOR PEOPLE WITH OR
WITHOUT INTELLECTUAL DISABILITY,
FOR EXAMPLE, JOE TALKING ABOUT
HOW HARD IT WAS TO FIND
60-YEAR-OLD PEOPLE, AND MOST OF
THEM WERE INSTITUTIONALIZED.
NOW I AM -- I PUBLISHED A
COMMENTARY IN "AUTISM" A FEW
YEARS AGO TALKING ABOUT EXACTLY
THAT TOPIC THAT THE VAST
MAJORITY OF AUTISTIC PEOPLE WHO
WERE ALIVE 60 YEARS AGO HAVE
NEVER BEEN DIAGNOSED, AND THEY
ARE INVISIBLE.
THEY'RE JUST PART OF THE SYSTEM.
SO THEY'RE NOT OUT THERE TO BE
FOUND.
IF I LOOK AT MY EXPERIENCE AT
THE LAB, AND I CAN'T GIVE YOU A
SPECIFIC NUMBER, BUT IF YOU JUST
REASON WITH ME AND YOU IMAGINE
THAT LAB IS FULL OF A LOT OF
BRILLIANT GEEKS WHO HAVE A LOT
OF TRAITS OF NEURODIVERSITY.
IF THE LIFE EXPECTANCY OF
SEPARATE SCIENTISTS AT THE
LIVERMORE LAB WAS 20 YEARS LESS
THAN THE LIFESPAN OF THE GENERAL
POPULATION, BELIEVE ME, YOU'D
HEAR ABOUT IT.
AND I THINK THAT THAT'S TRUE IN
OTHER PLACES WHERE YOU HAVE
LARGE NEURODIVERGENT
POPULATIONS.
SO I DON'T THINK THAT IT'S
LIKELY THAT FOLKS -- MANY CH US
FOLKS DIE THAT EARLY.
BUT I THINK IT'S VERY
SIGNIFICANT, FOR EXAMPLE, THAT
YOU FOUND SUCH A HIGHER
INCIDENCE OF PARKINSON'S.
AND I COMMENTED MYSELF ON
TREMORS INCREASING WITH AGE.
I THINK IT'S VERY SIGNIFICANT
THAT EVERY SINGLE PERSON WHO
SPOKE WITH ME ON LIVED
EXPERIENCE TALKED ABOUT ANXIETY.
I THINK WE DEFINITELY KNOW SOME
OF THE -- SOME THINGS ARE
PROBLEMS, SOME THINGS ARE VERY
LIKELY PROBLEMS.
I DON'T KNOW HOW YOU'RE EVER
GOING TO GO OUT AND ASSEMBLE A
COHORT OF 60-SOMETHING
INDIVIDUALS.
LIKE ME, WITH ME BEING A PERSON
WHO WAS NOT DIAGNOSED IN EARLY
CHILDHOOD, AND PROBABLY GREW TO
ADULTHOOD WITHOUT A DIAGNOSIS.
I THINK THAT'S A REALLY HARD
PROBLEM.
AND WE SPOKE ABOUT THAT SEVERAL
YEARS AGO.
AND I WOULD JUST MAKE PEOPLE
AWARE THAT THIS ISN'T A MATTER
OF JUST FUND AGO STUDY AND GOING
OUT LOOKING FOR THOSE
65-YEAR-OLD AUTISTICS BECAUSE
MOST PEOPLE WHO DID NOT GET
DIAGNOSED ARE NOT GOING TO JUST
COME OUT AND BECOME DIAGNOSED
TODAY BECAUSE WE WANT TO DO A
STUDY.
THAT'S A REALLY MAJOR BARRIER TO
RESEARCHING THIS.
>>THANKS, JOHN.
APPRECIATE IT.
THEN SCOTT.TH JALYNN NEXT AN%-
>>THANK YOU.
I APPRECIATE SO MUCH THE
RESEARCH THAT YOU HAVE DONE.
WE STARTED LOOKING AT LIFESPAN
ISSUES AS THE FIRST ORGANIZATION
IN THE COUNTRY JUST DEDICATED TO
THAT, AND WHEN WE FIRST STARTED
TRYING TO DO A LITERATURE SEARCH
FOR ANYTHING ABOVE 50 WAS ALMOST
IMPOSSIBLE.
AND TO SEE THAT YOU'RE TAKING
THIS VERY SERIOUSLY AND LOOKING
AT IT IN DEPTH AND SEEING WHAT
ELSE NEEDS TO BE DONE IS TO BE
APPLAUDED.
I'VE SEEN SOME INTERESTING
THINGS WITH THE GROUPS THAT I
MONITOR.
ONE WEEK, THIS WAS A FEW MONTHS
BACK, THERE WERE 28 INDIVIDUALS
ON THE SITES THAT I'M ON THAT
HAD BROUGHT THEIR STORIES
FORWARD ABOUT BEING OVER THE AGE
OF 35 AND BEING DIAGNOSED ON THE
AUTISM SPECTRUM JUST WITHIN
RECENT MONTHS.
SO THERE'S A LARGE COHORT THAT
WE'RE SEEING WITH THE SITES THAT
WE ARE LOOKING AT, AND AGAIN,
IT'S NOT THE PEOPLE THAT WERE
DIAGNOSED AS CHILDREN, BUT
THEY'RE COMING UP AND THEY'RE
GOING TO BE HAVING THE PROBLEMS,
THEY'RE GOING TO BE HAVING MANY
OF THE SAME TYPES OF PROBLEMS,
AND IT IS SOMETHING THAT HAS A
MUCH GREATER NUMBER THAN WE'RE
ABLE TO IDENTIFY.
IT'S INTERESTING THAT YOU HAD
MENTIONED THE FIRST AUTISTIC
MAN, DONALD TRIPLETT, I WAS
GOING TO BRING IT IN LATER BUT
SINCE SOME OF THE GUESTS ARE
HERE.
THE BOOK "IN A DIFFERENT KEY"
WAS WRITTEN INITIALLY ABOUT HIM,
AND THERE IS A MOVIE ABOUT THE
FIRST AUTISTIC MAN, AND IT'S
GOING TO BE ON PBS.
IT WAS DONE BY JOHN DONOVAN AND
KAREN ZUCKER, DECEMBER 13TH AT
9:00 P.M. ON PBS EASTERN
STANDARD TIME, AND THAT MAY GIVE
A LITTLE BIT MORE OF A CONTEXT
TO THE CHALLENGE OF WHAT WE'VE
BEEN FACING SINCE THE FIRST
OFFICIAL DIAGNOSIS OF AUTISM AND
THE INDIVIDUAL THAT THE STORY IS
CENTERED ON.
I THINK YOU'LL FIND IT VERY,
VERY INTERESTING.
AND AGAIN, THANK YOU VERY MUCH
FOR DOING THIS RESEARCH AND I
WOULD LOVE TO WORK WITH YOU IN
WHATEVER WAY I COULD PERHAPS BE
OF HELP.
>>THANK YOU, JALYNN.
FINALLY, SCOTT ROBINSON.
>>THANKS, DR. GORDON.
I'LL TRY TO KEEP IT BRIEF
BECAUSE I KNOW WE'RE RUNNING
SHORT ON TIME.
WHAT I WANTED TO EMPHASIZE IS
MAYBE WE COULD LOOK TO, FOR
INSTANCE, THE STATES AT TIMES
FOR COLLABORATION KIND OF ON
THIS.
I KNOW THAT IN PENNSYLVANIA, FOR
INSTANCE, SOME OF MY COLLEAGUES
THERE HAD JUST ACCIDENTALLY
ENCOUNTERED LIKE AUTISTIC ADULTS
WHO ARE OLDER IN DIFFERENT
FACILITIES, ET CETERA, AND IT
WAS LIKE BEING BROUGHT UP TODAY
THAT FOLKS WERE NEVER BEING
DIAGNOSE AND JUST BY
HAPPENSTANCE.
SO I THINK WE JUST HAVE TO
CONSIDER ALL DIFFERENT TYPES OF
CONNECTIONS ON THIS AS FAR AS AT
THE STATE AND LOCAL LEVEL, AND
MAYBE THIS SPEAKS TO ALSO
INTERAGENCY FOCUS.
THIS IS PRIMARY, THE FOCUS, FOR
INSTANCE, FOR ACL, BUT I THINK
MAYBE SOME OF US, THE REST OF
THE AGENCIES COULD BE
COLLABORATING ON THIS AS FAR AS
THE ECONOMIC FACETS, THE HOUSING
FACETS, HOW THAT CHANGES AS
FOLKS AGE.
SO -- BUT THIS IS VERY
ENLIGHTENING AS FAR AS THANK YOU
FOR SHEDDING A LIGHT ON THE
RESEARCH AND THE DATA IN THIS
SPACE IS VERY HELPFUL.
>>WONDERFUL.
THANK YOU, SCOTT.
SEEING NO OTHER HANDS UP, I
THINK WE CAN MOVE ON TO THE
FINAL ITEM ON OUR AGENDA TODAY,
WHICH IS ROUND ROBIN UPDATES.
SUE SARNTIONSUSAN, I'LL LET YOUS
PART OF IT.
>>THANK YOU.
YES, WE ARE OPEN FOR ROUND ROBIN
UPDATES.
I BELIEVE ALICE HAD AN
ANNOUNCEMENT ABOUT THE ACES, IF
SHE IS ON THE CALL.
>>YES, I'M ON.
CAN YOU HEAR ME?
>>YES.
>>GOOD.
I'M ALICE FROM NICHD.
I WOULD LIKE TO SHARE SOME
EXCITING NEWS ABOUT THE NIH
AUTISM CENTERS OF EXCELLENCE
PROGRAM.
NIH HAS JUST AWARDED NINE ACES
TO SUPPORT A LARGE SCALE
RESEARCH ON A RANGE OF RESEARCH
TOPICS.
THE ACE PROGRAM WAS ESTABLISHED
IN 2007 BY NICHD, NIMH, NINDS,
NIDCD AND NIEHS.
SO THIS IS THE FOURTH ITERATION
OF THE PROGRAM.
IN THIS ROUND OF COMPETITION,
EACH APPLICATION MUST INCLUDE A
PLAN FOR ENHANCING DIVERSE
PERSPECTIVE, COMMUNITY
ENGAGEMENT IS ALSO A KEY, CORE
FEATURE OF THE ACE PROGRAM.
EACH ACE WILL HAVE AN EXTERNAL
ADVISORY COMMITTEE THAT INCLUDES
INDIVIDUALS WITH AUTISM AND
PARENTS OF INDIVIDUALS WITH
AUTISM AS MEMBERS.
HALF OF THE COHORT OF THESE
GRANTEES ARE NEW TO THE ACE
PROGRAM.
AND THE RESEARCH AIMS OF THESE
NEWLY FUNDED ACE WILL ADDRESS
MANY GAPS IN AUTISM RESEARCH AS
IDENTIFIED IN THE IACC STRATEGIC
PLAN.
I WILL NOW MENTION THREE NEW
ACES HERE, CONSIDERING THE
DISCUSSION AND PRESENTATION IN
THIS MEETING.
FIRST THE NEW ACE AT UNIVERSITY
OF WISCONSIN-MADISON WILL ENROLL
A LARGE SAMPLE OF MALE AND
FEMALE ADULTS WITH AND WITHOUT
AUTISM TO EXAMINE HOW AGING
RELATED DIFFERENCES MAY
CONTRIBUTE TO DIFFERENT HEALTH
OUTCOMES.
SECOND, THE NEW ACE AT
UNIVERSITY OF PIT BURG WILL
EXAMINE EMOTIONAL AND MENTAL
HEALTH IN AUTISM ADULTS.
THE RESEARCH TEAM WILL EXAMINE
PREDICTORS OF SUICIDALITY AND
VALIDATE A SUICIDE SELF-REPORT
MEASURE.
AND THE NEW ACE AT DREXEL
UNIVERSITY WILL USE A PUBLIC
HEALTH FRAMEWORK TO STUDY HEALTH
DETERMINANTS, HEALTH INEQUITY
AND HEALTH SERVICES DELIVERY AND
THEIR IMPACT ON HEALTH OUTCOME
ACROSS THE LIFESPAN.
IN THOSE
WITH AUTISM.
WE WILL POST MORE INFORMATION AT
THE IACC WEBSITE.
>>THANK YOU SO MUCH, ALICE, FOR
THAT TIMELY UPDATE.
AND WE LOOK FORWARD TO HEARING
MORE ABOUT THE ACES AND PROBABLY
WILL SHARE HERE AT IACC ABOUT
THEM IN THE FUTURE.
>>YES.
>>LARRY WEXLER, DO YOU HAVE AN
UPDATE FOR US?
>>I DO.
THANK YOU, SUSAN.
GOOD LATE AFTERNOON TO EVERYONE.
I MANAGE THE DEPARTMENT OF
EDUCATION'S OFFICE OF SPECIAL
EDUCATION'S DISCRETIONARY GRANTS
PROGRAM.
SO I MANAGE A PRETTY -- A FAIRLY
LARGE PORTFOLIO OF GRANTS.
WE MADE A NUMBER OF PERSONAL
PREPARATION GRANTS THAT ARE
FOCUSED ON DOCTORAL TRAINING AND
MASTERS LEVEL TRAINING AROUND
AUTISM, BUT WHAT I WANTED TO
SHARE WITH YOU WAS A
NON-AUTISTIC FOCUSED GRANT.
IT CALLED THE RHONDA WEISS DATA
ACCESSIBILITY CENTER, AND IT'S
ONE WE'RE REALLY EXCITED ABOUT.
AND I THINK IT WILL, IN FACT,
AFFECT -- ITS FOCUSED ON BLIND
AND VISUALLY IMPAIRED, BUT WE
HAVE FOUND THAT MANY OF OUR
ACCESS PROJECTS RELATE TO PEOPLE
WITH ALL SORTS OF PERCEPTUAL
DISABILITIES AND, I MEAN, WE'RE
THE PEOPLE THAT BROUGHT YOU
CLOSED CAPTIONING, WHICH IS USED
A HECK OF A LOT MORE BY PEOPLE
WATCHING NETFLIX NOW THAN BY
PEOPLE WHO ARE DEAF.
SO THIS CENTER, THE ISSUE WE HAD
IS THAT OUR DATA ARE POSTED
PUBLICLY.
I OVERSEE THE DATA FOR 7 MILLION
CHILDREN WITH DISABILITIES IN
THE UNITED STATES, AND ANYONE IN
THE PUBLIC CONSIDER DOWNLOAD
THOSE DATA INTO WHATEVER FORMAT
THEY WANT AND THEN THEY CAN
MANIPULATE THE DATA.
IF YOU'RE BLIND OR VISUALLY
IMPAIRED, YOU CAN -- YOUR
SCREENREADER WILL READ THE DATA,
BUT IT'S INCAPABLE OF
MANIPULATING THE DATA.
AND THIS IS A $10 MILLION,
$15 MILLION SOFTWARE DEVELOPMENT
PROJECT OVER A FIVE-YEAR PERIOD
TO ESSENTIALLY ANSWER THAT
QUESTION, CAN WE DEVELOP
SOFTWARE THAT WOULD ALLOW
SOMEONE WHO IS BLIND OR VISUALLY
IMPAIRED BUT FOR OTHER REASONS
ISN'T ABLE TO MANIPULATE DATA IN
ITS NORMAL FORMAT.
MANY OF YOU WHO PROBABLY HAVE
DOCTORAL STUDENTS OR GRADUATE
STUDENTS, IF THEY HAVE A
DISABILITY, KNOW SOME OF THE
CHALLENGES AROUND ACCESSING DATA
WHEN SOMEONE HAS A SIGNIFICANT
PERCEPTUAL PROBLEM.
SO ANYWAY, WE FUNDED THAT, THE
GRANTEE IS AEM, WHICH IS A
DC-BASED LARGE CONSULTANCY WHO
FRANKLY HAS DONE OTHER SOFTWARE
DEVELOPMENT FOR US AND DID A
SPECTACULAR JOB.
THEY ACTUALLY -- THAT PROJECT
CHANGED THE WAY WE COLLECT DATA
THROUGHOUT THE COUNTRY.
AND THEY'RE IN PARTNERSHIP WITH
WESTDAT WHICH ACTUALLY HAS
HANDLED OUR DATA FOR DECADES.
SO STAY TUNED, I THOUGHT YOU
MIGHT BE INTERESTED, AND WHILE
IT'S NOT AUTISM-FOCUSED, I
BELIEVE IT WILL HAVE AN IMPACT
ON MANY, MANY PEOPLE AND GIVE
PEOPLE ACCESS.
THANKS.
>>THANK YOU SO MUCH, LARRY, FOR
THAT UPDATE.
WE REALLY APPRECIATE IT.
JENNIFER JOHNSON, DO YOU HAVE AN
UPDATE FROM ACL?
>>I JUST WANTED TO MENTION A
COUPLE OTHER NEW PROJECTS THAT
WE'RE FUNDING.
I THINK YOU'VE IDENTIFIED
SEVERAL OF THE INITIATIVES THAT
WE'RE SUPPORTING.
I DID MENTION THE CENTER THAT WE
FUNDED THIS SEPTEMBER FOR
CO-OCCURRING INDIVIDUALS WITH
CO-OCCURRING MENTAL HEALTH
DISABILITIES AND INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES,
SO THAT WILL CONTINUE OUR WORK
IN THE AREA OF HEALTH EQUITY.
BUT ALSO IN AN IMPORTANT AREA
WHERE PEOPLE EXPERIENCE
CO-OCCURRING MENTAL HEALTH AND
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES.
WE ALSO FUNDED THE SEPTEMBER --
THE NATIONAL CENTER FOR
DIVERSITY, EQUITY AND INCLUSION,
AND THIS IS A CENTER THAT WILL
ALSO CONTRIBUTE TO THE WORK THAT
WE'RE DOING IN HEALTH EQUITY,
BUT ALSO BROADEN IT INTO OTHER
AREAS WHERE PEOPLE WITH
DISABILITIES EXPERIENCE
DISCRIMINATION AND SO THAT IS
SOMETHING THAT WILL CONTINUE.
AND WE ALSO JUST ANNOUNCED
FUNDING FOR NATIONAL CENTER ON
THE DIRECT CARE WORKFORCE THAT'S
FOCUSED ON BUILDING CAPACITY
WITHIN STATES AND COMMUNITIES TO
STRENGTHEN THE DIRECT CARE
WORKFORCE.
I THINK EVERYBODY IS PROBABLY
FAMILIAR WITH THE CRISIS THAT WE
HAVE BEEN IN THAT WAS MADE THAT
MUCH WORSE THROUGH COVID, AND
THAT PEOPLE ARE REALLY, REALLY
STRUGGLING THESE DAYS TO FIND
DIRECT CARE WORKERS AND RETAIN
THE DIRECT CARE WORKERS THAT
THEY HAVE.
AND SO THIS IS A PROJECT THAT IS
JOINTLY FUNDED BY THE
ADMINISTRATION ON DISABILITIES
AND THE ADMINISTRATION ON AGING
BECAUSE THIS IS AN ISSUE THAT
CUTS ACROSS BOTH DISABILITY AND
AGING.
SO THAT CENTER IS JUST GETTING
LAUNCHED, HAS A NUMBER OF AGING
AND DISABILITY PARTNERS THAT,
AGAIN, WILL BE LOOKING AT THE
CAREGIVER CRISIS AND HELPING TO
ADDRESS THAT.
>>THANK YOU SO MUCH FOR THOSE
UPDATES, JENNIFER, ON THOSE
DIFFERENT PROJECTS.
AND ARE THERE ANY OTHER MEMBERS
THAT HAVE UPDATES TO SHARE?
OH, I SEE, YETTA, YOU HAVE YOUR
HAND UP.
>>YES, THANKS, SUSAN.
JUST WANT TO HAVE A COUPLE OF
THINGS THAT ARE IN THE ROUND
ROBIN DOCUMENT, SO THE FIRST OF
THREE THAT I SUBMITTED, ONE IS
THAT THE CO-CREATED A NEW BOOK
ABOUT DEVELOPMENTAL MILESTONES,
AND IT'S CALLED MR. MARSHALL'S
BLOCK PARTY.
IT'S A CHILDREN'S BOOK AND
REALLY THE FOCUS IS TO SUPPORT
BLACK AND AFRICAN AMERICAN
FAMILIES AND MONITORING THEIR
CHILD'S DEVELOPMENT.
THIS WAS FUNDED THROUGH THE
CDC'S COVID RESPONSE PROJECT, SO
I AM THE CDC'S AMBASSADOR TO THE
DISTRICT OF COLUMBIA.
SO ONE OF THE THINGS I WAS
HEARING FROM FAMILIES IS THAT
THEY DON'T SEE THEMSELVES
REPRESENTED IN THE MATERIALS
OFTENTIMES, AND SO THIS WAS
BASICALLY A CALL, AN ANSWER TO
THAT.
I'M FOR THE FAMILIES IN D.C. ,
BUT THE BOOK IS AVAILABLE AS AN
E-BOOK.
THE LINK IS IN THE ROUND ROBIN
DOCUMENT FOR FREE.
AS WELL AS CAN BE PURCHASED ON
AMAZON, BUT LITERALLY FOR THE
COST OF THE PRINTING OF THE BOOK
FOR SUSTAINABILITY PURPOSES.
OTHER THAN THAT, THE BOOK IS
FREE, YOU CAN ACCESS THE E-BOOK
SO LET FAMILIES KNOW THAT.
ALSO, I WORK WITH DR. LISA WARE
AT FAMILY VOICES ON A PROJECT
THAT'S PCORI FUNDED AND WE
TRAINED 3600 AFRICAN AMERICAN
PARENTS AND STAKEHOLDERS OVER
THE SUMMER AND SOME OF THE
THINGS THAT CAME UP IN THAT
CONVERSATION, AND WE'RE STILL IN
PROCESS, THAT I THINK RELATE TO
THE STRATEGIC PLAN SPECIFICALLY
FOR THE AFRICAN AMERICAN
COMMUNITY IS REALLY FOCUSING ON
LIFE AFTER THE DIAGNOSIS AND
INTEGRATION INTO THE COMMUNITY
ACROSS THE LIFESPAN, SO WE'VE
ALREADY BEEN TALKING ABOUT THAT
TODAY.
AND ANOTHER THING THAT WE FOUND
THROUGH THIS PROCESS IS THAT
THERE WERE QUITE A FEW OF THE
SELF-ADVOCATES THAT PARTICIPATED
WERE SELF DIAGNOSED.
SO I JUST WANT TO FLAG THAT FOR
THE COMMITTEE AS WELL.
THE THIRD THING WHICH I THINK IS
OF INTEREST TO EVERYONE IS THE
SUPPORTING ACCESS FOR EVERYONE
INITIATIVE, I AND I BELIEVE MO I
BELIEVE THEY HAVE EXTENDED OUT
THE CALL FOR PUBLIC TESTIMONY ON
THEIR WEBSITE, THE DUE DATE IS
OCTOBER 30 FI BUT R 31ST.
THERE WAS A PUBLIC FORUM HELD
LAST MONTH, TWO DAYS WHERE
PEOPLE PROVIDED TESTIMONY,
INITIALLY THEY CLOSED IT BUT
OPENED IT BACK UP BECAUSE WE
WANT TO MAKE SURE WE'RE GETTING
DIVERSE POINTS OF VIEW BUT
REALLY THINK ABOUT THIS AS THE
AUTISM-FRIENDLY HOSPITAL
INITIATIVE.
AND REALLY WANTING TO MAKE SURE
THAT PROVIDERS HAVE A CLEAR
UNDERSTANDING OF HOW TO SUPPORT
INDIVIDUALS AND THEIR FAMILIES
ACROSS THE LIFESPAN, SO
DEFINITELY CHECK OUT MORE DETAIL
IN THE ROUND ROBIN DOCUMENT AND
I HOPE THAT YOU ALL WILL SUBMIT
TESTIMONIES.
THANK YOU.
>>THANK YOU SO MUCH FOR SHARING
THAT, YETTA.
I DIDN'T MENTION THIS, BUT THERE
IS A ROUND ROBIN DOCUMENT FOR
ANYONE WHO'S WATCHING THIS
MEETING TODAY, YOU CAN GO ONLINE
AND OUR MEMBERS HAVE SUBMITTED
IN WRITING A LOT OF DIFFERENT
UPDATES, SO PLEASE CHECK OUT
THAT DOCUMENT.
NEXT WE'LL GO TO ALYCIA.
HALLADAY.
>>HI, EVERYONE.
THANK YOU, SUSAN.
I'LL BE QUICK.
I HAVE SOME ANNOUNCEMENTS.
FIRST OUR PRE AND POSTDOCTORAL
FELLOWSHIP MECHANISM ALONG WITH
OUR POST UNDERGRADUATE MECHANISM
IS LIVE.
THE DEADLINE IS EARLY DECEMBER,
SO BEFORE OUR NEXT IACC MEETING,
SO I THOUGHT I WOULD PUT A PLUG
IN TO MAKE SURE THAT EVERYBODY
WAS AWARE OF THAT.
ALSO THANK YOU, SUSAN, FOR
MENTIONING THE PARTICIPATE IN
RESEARCH PORTAL.
THIS IS SOMETHING WE HAD WANTED
TO DO FOR A WHILE.
YEARS AGO, INTERACTIVE AUTISM
NENETWORK WHICH I KNOW HAS MOVED
OVER TO SPARK HAD A DASHBOARD
WHERE YOU COULD ENTER IN THE
CHARACTERISTICS OF YOUR FAMILY
OURSELF AND THEN A NUMBER OF
OPTIONS WOULD POP UP FOR YOU TO
PARTICIPATE IN RESEARCH.
FRANKLY, I DON'T KNOW OF A STUDY
THAT DOESN'T HAVE PROBLEMS
RECRUITING INDIVIDUALS AND
FAMILIES SO WE THOUGHT THIS WAS
A GREAT OPPORTUNITY.
IT FREE FOR FAMILIES, FREE FOR
RESEARCHERS.
YOU CAN SEARCH BY AGE, YOU CAN
SEARCH BY YOUR PREFERENCE AND
TYPE OF STUDY, YOU CAN SEARCH
WHAT IS AVAILABLE IN YOUR
COMMUNITY AND ONLINE.
WE'RE HOPING TO, AS WE GO
FORWARD, HELP THE RESEARCHERS
WHO HOST MAKE THEM MORE FRIENDLY
AND ACCESSIBLE TO THE COMMUNITY.
I KNOW THAT'S NOT ALWAYS EQUAL.
FINALLY SINCE OUR LAST MEETING,
WE HAVE HOSTED AND SHARED THE
MEETING WE DID, WE COLLABORATED
WITH THE -- SYNDROME FOUNDATION,
THE CDKL5 FOUNDATION, I'M
OBVIOUSLY FOR GETTING --
UNIVERSITY OF INDIANA ON
INITIATIVE TO BETTER UNDERSTAND
GASTROINTESTINAL SYMPTOMS IN
INDIVIDUALS WITH
NEURODEVELOPMENTAL DISORDERS,
AND THESE CAN BE FATAL.
A LOT OF TIMES INDIVIDUALS DON'T
SOMETIMES UNDERSTAND OR ARE ABLE
TO TOLERATE THE DIAGNOSTIC
PROCEDURES INVOLVED IN
GASTROINTESTINAL ASSESSMENTS.
SO WE HAD A TWO-DAY MEETING
AROUND IT, SPECIFICALLY FOCUSED
ON THOSE WITH NEURODEVELOPMENTAL
DISORDERS AND IDENTIFIED AREAS
OF NEED GOING FORWARD, AND WE
HAD ALSO CONDUCTED BOTH THE
QUANTITATIVE AND QUALITATIVE
STUDY ABOUT PEOPLE'S EXPERIENCES
WITH G.I. ISSUES AND AUTISM,
AND/OR DEVELOPMENTAL DISORDERS.
SO YOU CAN GO TO OUR WEBSITE,
CANDID GI.COM, WATCH ALL THE
VIDEOS AND SEE ALL THE
PRESENTATIONS AND THEN ALSO
THERE'S SOME OTHER FEATURES ON
THAT WEBSITE THAT YOU CAN SEE.
SO THAT'S IT.
>>THANK YOU, ALYCIA.
I'M GOING TO GO TO STEVEN.
DID YOU HAVE SOMETHING THAT CAME
IN IN WRITING?
>>YES, HI.
JENNY MAI PHAN IS PROMOTING A
RESEARCH STUDY FROM CALIFORNIA
STATE AT FRESNO.
THEY'RE RECRUITING ASIAN
FAMILIES OF CHILDREN BETWEEN THE
AGES OF 3 AND 21.
SHE SAYS ASIAN FAMILIES OF
CHILDREN WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES ARE
ASKED TO SHARE THEIR EXPERIENCES
PARTICIPATING IN A CHILD'S IEP,
INDIVIDUALIZED EDUCATION PROGRAM
MEETINGS.
FAMILIES ARE ASKED TO COMPLETE
QUESTIONNAIRES IN A 30-MINUTE
INTERVIEW.
FOR MORE INFORMATION, PLEASE
CONTACT CHRISTINA R IOS AT KR
IOS@MAIL.FRESNOSTATE.EDU.
>>THANK YOU, JENNY.
NEXT, DENA GASSNER.
>>I JUST WANTED TO SHARE THAT
DREXEL IS SPONSORING A POWER
POLICY LUNCHEON NOVEMBER 2ND
VIRTUALLY FROM 12:00 UNTIL
1:00 EASTERN TIME.
MYSELF AND THREE OTHER
COLLEAGUES WHO ARE PART OF THE
AIRP NETWORK ON REPRODUCTIVE
HEALTHCARE ARE GOING TO BE
UNPACKING REPRODUCTIVE RIGHTS
AND DISABILITY RIGHTS.
SO IF ANYBODY IS INTERESTED,
IT'S BEEN ON FACEBOOK.
YOU CAN LOOK AT A VARIETY OF
DIFFERENT PEOPLE'S PAGES AND
PICK UP ON IT.
I ALSO DROPPED A LINK HERE IN
THE CHAT.
THANK YOU.
>>THANK YOU, DENA.
IF YOU NEED TO SEND THAT, IF
IT'S NOT IN THE ROUND ROBIN
DOCUMENT, YOU CAN SEND TO US AND
WE'LL UPDATE THE DOCUMENT.
SCOTT ROBERTSON.
>>THANKS, SUSAN.
IF I COULD SEND A FEW THINGS FOR
URLs TO UPDATE THE DOCUMENT,
THAT WOULD BE GREAT.
I APOLOGIZE FOR NOT HAVING SENT
IT EARLIER IN THE WRITTEN FORUM.
BOTH FOR OUR -- THE
NEURODIVERSITY AN IN THE WORKPLE
GUIDE TOOLKIT THAT WAS MENTIONED
IN THE REMARKS AT THE BEGINNING
OF THE DAY ON NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH, AND WE HAD AN EVENT
RECENTLY OF CORPORATE EMPLOYERS
AND DISABILITY ADVOCACY LEADERS
WHO CAME TOGETHER TO DISCUSS
INNOVATIVE APPROACHES TO
FOSTERING MENTAL HEALTH FRIENDLY
WORKPLACES.
SO I CAN SEND YOU THE LINK FOR
THAT FOR THE VIDEO IN HONOR OF
NATIONAL DISABILITY EMPLOYMENT
AWARENESS MONTH AND THIS WAS AN
EMPLOYER CHAT ON WORKPLACE
MENTAL HEALTH AND WELL-BEING.
AND THEN I CAN ALSO INCLUDE THE
LINK FOR OUR GENERAL AND
NATIONAL DISABILITY EMPLOYMENT
AWARENESS MONTH SITE.
I KNOW THE MONTH IS ENDING, BUT
IF ANYBODY STILL WANTED TO
ORGANIZE ANY EVENT OR WANTED TO
ORGANIZE EVENT FOR 2013, AND
THEN THE OTHER BRIEF THING TO
MENTION TOO IS THAT OUR
PARTNERSHIP ON INCLUSIVE
APPRENTICESHIP HAS EQUAL
EMPLOYMENT OPPORTUNITY TOOLKIT
AND SOME OTHER UPDATED
RESOURCES, SO I CAN SEND YOU
THOSE LINKS.
THANKS, SUSAN, AGAIN SORRY THAT
I HAD IT I HADN'T SENT THESE INN
FORM BEFORE.
>>AISHA DICKERSON.
>>THEY WON'T LET ME TURN MY
CAMERA ON, WHICH IS FINE, BUT IT
JUST OCCURRED TO ME -- THERE WE
GO.
IT JUST OCCURRED TO ME RIGHT NOW
THAT I DID NOT SEND IN THIS
INFORMATION FOR A SYMPOSIUM
THAT'S BEING HOSTED AT TUFTS
UNIVERSITY ON NOVEMBER 10TH ON
THE ROLE OF FOOD AND NUTRITION
IN AUTISM, SO I'LL ADD THAT TO
THE ROUND ROBIN DOCUMENT.
SO YOU ALL CAN SHARE IT.
>>SO FEEL FREE TO SEND THAT IN
IF ANYONE HAS ANYTHING ELSE TO
SEND IN, YOU CAN SEND TO US AND
WE WILL UPDATE IT AND YOU WILL
HAVE ALL OF THAT INFORMATION.
WE REALLY APPRECIATE EVERYBODY
SHARING THE EVENTS AND
ACTIVITIES FROM AROUND THE
COMMUNITY.
SO IN CLOSING, AND DR. GORDON
CAN JOIN ME ON THIS, I WANT TO
SAY THANK YOU TO ALL OF THE
PANELS AND PRESENTATIONS WE'VE
HAD TODAY.
WE'VE HAD REALLY GREAT
DISCUSSIONS ON EMPLOYMENT AND
AGING, AND BOTH OF THESE TOPICS
EVERY YEAR WE DO TRY TO AT NDAEM
TALK ABOUT WHAT'S GOING ON IN
EMPLOYMENT AND IT'S BEEN A GOAL
FOR A WHILE TO REALLY HAVE A
GOOD DISCUSSION ON AGING AND
AUTISM, AND I FEEL LIKE WE DID A
GREAT JOB HEARING FROM A LOT OF
DIFFERENT PERSPECTIVES AND
DISCUSSING WHAT'S KNOWN IN THE
RESEARCH FIELD RIGHT NOW.
SO THANK YOU SO MUCH FOR ALL
YOUR ENGAGEMENT ON THAT.
AND ALSO FOR YOUR ENGAGEMENT ON
THE STRATEGIC PLAN PROCESS.
WE HAVE SOME ACTION ITEMS WHICH
I OUTLINED EARLIER AND I'LL
FOLLOW UP WITH EMAIL TO LET
PEOPLE KNOW WHAT WE NEED FOR THE
NEXT STEPS BEFORE OUR JANUARY
MEETING.
JOSH, DO YOU HAVE SOME REMARKS?
>>YEAH, I WANT TO THANK
EVERYONE FOR THEIR RESPECTFUL
DISCUSSIONS.
I KNOW THAT SOME OF THE COMMENTS
ARE CONTROVERSIAL, BUT I THINK
THEY ALSO GIVE US THINGS TO
THINK ABOUT AND AS WAS BROUGHT
UP BY SEVERAL INDIVIDUALS, FOR
EXAMPLE, THINKING ABOUT MAKING
SURE WE ARE CONSIDERED ABOUT THE
THE -- CONSIDERATE ABOUT THE
LANGUAGE WE USE AND ALSO MAKING
SURE WE ARE REPRESENTING THE
FULL SPECTRUM OF AUTISM AND I
THOUGHT THERE WAS SOME VERY
THOUGHTFUL DISCUSSION ABOUT OUR
EFFORTS IN THAT REGARD.
SO THANK YOU VERY MUCH TO THAT.
THERE WAS A COMMENT MADE BY
SOMEONE AND I THINK ECHOED BY
SOMEONE ELSE THAT THERE HAVE
BEEN CONCERNS ABOUT SOME PEOPLE
MONOPOLIZING THE CONVERSATION.
I FELT LIKE TODAY THAT WAS NOT
THE CASE, AND IN FACT, I
APOLOGIZE, I THINK SOMEONE ELSE
SAID, OH, I'M WORRIED I MIGHT BE
MONOPOLIZING THE CONVERSATION
BUT I WANT TO SAY THIS ANYWAY.
I'D HAVE TO SAY THAT IT MY JOB
TO MAKE SURE THAT DOESN'T
HAPPEN, AND IF THERE ARE OTHER
FOLKS WHO HAVEN'T SPOKEN YET
WAITING IN THE CUE, I CAN
ELEVATE THEM, ET CETERA, BUT SO
FAR WE'VE BEEN ABLE TO FIT IN
THE FULL BREADTH OF THE
CONVERSATION AROUND MOST OF THE
ISSUES THAT WE'VE TALKED ABOUT
TODAY.
WITH SOME LIMITED EXCEPTIONS.
SO I FEEL LIKE TODAY WAS VERY
GOOD IN TERMS OF DIFFERENT
PEOPLE CHIMING IN, AND I THINK
WE DEFINITELY SAUL THAT
PERSPECTIVE BUT I WILL CONTINUE
AS CHAIR OF THE IACC TO WATCH
OUT FOR THAT.
AND IF ANYONE DOES HAVE ANY
CONCERNS ABOUT NOT BEING ABLE TO
GET IN THEIR COMMENTS, PLEASE
LET ME KNOW OFFLINE AND I'LL BE
HAPPY TO MAKE SURE THAT
EVERYBODY GETS THEIR
OPPORTUNITIES.
SO THANK YOU VERY, VERY MUCH,
AND LAST I DO WANT EVERYONE, AS
SUSAN WILL TALK ABOUT UPCOMING
ACTIONS, I DO WANT EVERYONE TO,
AS THEY LOOK OVER THE STRATEGIC
PLAN, THINK ABOUT WHAT THEY
HEARD TODAY, AND WHETHER WE
MIGHT NEED TO MAKE CHANGES TO
THE DOCUMENT AS WE GO TOWARDS
FINALIZING IT EARLY NEXT YEAR.
>>YES, THANK YOU.
I'VE LISTED HERE THE UPCOMING
ACTION ITEMS BUT DON'T FEEL LIKE
YOU HAVE TO MEMORIZE THEM OFF
THE SLIDE.
I'LL SEND YOU AN EMAIL OR
SEVERAL EMAILS TO GET ALL OF
THESE FROM YOU.
DON'T WANT TO CLOSE WITHOUT
SAYING THANK YOU TO THE
WONDERFUL STAFF IN THE OFFICE OF
AUTISM RESEARCH COORDINATION WHO
BROUGHT YOU THIS MEETING TODAY,
HAVE BEEN WORKING VERY HARD
BEHIND THE SCENES ON ALL AS
PENGTS OF THE MEETPENGTS OF THEE
OVER 100 PAGE STRATEGIC PLAN
DRAFT WE HAVE IN FRONT OF US IS
THE PRODUCT OF A LOT OF HARD
WORK TO TRY TO INCORPORATE ALL
OF YOUR VALUABLE FEEDBACK AND
COMMENTS.
SO THANK YOU TO THE TEAM AND
THANK YOU TO ALL OF YOU FOR YOUR
REALLY ENGAGED PARTICIPATION.
WE VERY MUCH APPRECIATED HEARING
FROM EVERY SINGLE PERSON,
INCLUDING ALL THE DIFFERENT
PUBLIC COMMENTERS, PANELISTS,
PRESENTERS AND THE MEMBERS OF
THE COMMITTEE.
SO THANK YOU SO MUCH.
WE LOOK FORWARD TO SEEING YOU
NEXT TIME.
>>LET ME ADD ONE FINAL THANK
YOU, WHICH OTHERS HAVE ALREADY
DONE, WHICH IS TO THANK YOU,
SUSAN, FOR YOUR FEARLESS
LEADERSHIP OF THIS ENDEAVOR.
WE'LL SEE YOU ALL HOPEFULLY IN
PERSON EARLY NEXT YEAR.
>>THANK YOU.
>>ALL RIGHT.
GOODBYE.