>>WELCOME, EVERYONE.
THANK YOU FOR JOINING US TODAY.
I'M JOSHUA GORDON, I'M VERY
PLEASED FOR YOU TO BE JOINING US
TODAY FOR THIS MEETING OF OUR
COMMITTEE.
IT IS AUTISM AWARENESS MONTH,
WHERE WE TAKE TIME TO RECOGNIZE
THE CONTRIBUTIONS OF PEOPLE ON
THE AUTISM SPECTRUM TO OUR
COMMUNITIES.
WE SPENT A LOT OF TIME IN RECENT
COMMITTEE MEETINGS DISCUSSING
THE NEEDS OF AUTISTIC PEOPLE
ACROSS THE SPECTRUM, AND ACROSS
THE LIFESPAN.
I WANT TO ASSURE YOU WHAT WE DO
AT NIMH AS WELL AS ON THIS
COMMITTEE IS STRIVE TO IMPROVE
HEALTH AND WELL-BEING FOR ALL
AUTISTIC PEOPLE AND THEIR
FAMILIES.
A LITTLE BIT LATER DURING THIS
MEETING, YOU'LL HEAR ABOUT
SEVERAL SPECIAL EVENTS HAPPENING
ACROSS THE GOVERNMENT FOR AUTISM
AWARENESS MONTH.
YOU'LL HAVE LOTS OF OTHER
OPPORTUNITIES FOR A WONDERFUL
AGENDA WHICH I'LL BE DESCRIBING
IN A LITTLE BIT.
BEFORE I DO THAT THOUGH I WANT
TO MENTION SOME COMMITTEE MEMBER
UPDATES.
MS. DIANA GARCIA REPRESENTED THE
ADMINISTRATION FOR CHILDREN AND
FAMILIES IN THE RECENT PAST,
ACCEPTED A NEW POSITION OUTSIDE
OF THE FEDERAL GOVERNMENT, SHE
WON'T BE SERVING ON THE IACC.
ALTERNATE MEMBER FROM ACF IS
AMANDA BRYANT WHO WILL CONTINUE
TO SERVE UNTIL PERMANENT
REPLACEMENT IS NAMED.
MR. STEVEN WHITTLO, A PUBLIC
MEMBER, HAS ALSO STEPPED DOWN
FROM THE IACC IN MARCH AS HE
RECENTLY ANNOUNCED HIS RUN FOR
THE LOUISIANA STATE LEGISLATURE
WHERE HE WOULD CONTINUE TO
SUPPORT EFFORTS TO IMPROVE THE
LIVES OF PEOPLE WITH
DISABILITIES IF ELECTED.
BOTH DIANA AND STEPHEN EXPRESS
THEIR APPRECIATION FOR THE
OPPORTUNITY TO SERVE ON THE
IACC, AND WE WISH THEM WELL IN
THEIR FUTURE ENDEAVORS.
DR. JOSEPH PIVEN WILL STEP DOWN
FROM THE COMMITTEE IN THE COMING
WEEKS, JOE, WOULD YOU LIKE TO
SAY A FEW WORDS?
>>GREAT, THANKS, JOSH.
YEAH, I JUST WANTED TO THANK ALL
OF YOU, THE LEADERSHIP, FOR THE
OPPORTUNITY TO BE PART OF THIS
COMMITTEE OVER THE LAST TWO
YEARS ESPECIALLY TO THANK SUSAN
DANIELS AND HER INCREDIBLE TEAM
FOR ALL THE HARD WORK THEY HAVE
DONE AND CONTRIBUTIONS TO THE
AUTISM COMMUNITY.
I WISH WE HAD BEEN ABLE TO GET
TOGETHER FACE TO FACE SO WE
COULD HAVE FURTHER DEVELOPED OUR
RELATIONSHIPS, BUT HOPEFULLY MY
PATH WILL CROSS SOME OF YOU IN
THE FUTURE.
I THANK YOU AGAIN FOR THIS
OPPORTUNITY.
>>THANK YOU, JOE, FOR YOUR
CONTRIBUTIONS TO IACC OVER THE
PAST TWO YEARS AND FOR YOUR
CONTINUING CONTRIBUTIONS TO
SCHOLARSHIP AND TO MAKING THE
WORLD A BETTER PLACE FOR
INDIVIDUALS ON THE SPECTRUM.
WE WISH YOU WELL.
JOSEPH BROUGHT UP THE FACT THAT
WE'RE NOT MEETING IN PERSON
TODAY, I'LL JUST SAY WE WOULD
HAVE LIKED TO DO SO.
THE MEETING SPACE WE WERE
RELYING ON IS CURRENTLY UNDER
RENOVATION, OH WE -- SO WE HOPE
TO HAVE THAT OPEN FOR THE NEXT
MEETING IN THE FALL.
FINALLY I'D LIKE TO RECOGNIZE
THE NEWLY MINTED DOCTOR ON
COMPLETION OF HER STUDIES,
DISSERTATION, BRINGING FIRE TO
THE PEOPLE, AFTER THE
SCHOLARSHIP CREATIVE,
INTERNATIONAL ADVOCACY THROUGH
THE LENS OF BLACK DISABILITY
STUDIES IS A WONDERFUL
CONTRIBUTION TO SCHOLARSHIP AND
THE FIELD.
CONGRATULATIONS.
I'M SORRY TO SAY I'M GOING TO BE
STEPPING OFF OF THIS MEETING FOR
A FEW HOURS, I'LL REJOIN YOU FOR
THE PUBLIC COMMENT SECTION OF
THE MEETING.
I'VE HAD AN UNFORTUNATE FAMILY
EMERGENCY THAT I NEED TO ATTEND
TO THROUGHOUT THE DAY.
IN MY PLACE I WANT TO INTRODUCE
DR. SHELLI AVENOVOLI, DEPUTY
DIRECTOR OF NIMH, AND WILL BE
FILLING IN FOR ME WITH SUSAN
DANIELS, DR. SUSAN DANIELS, WHO
IS OF COURSE THE DIRECTOR OF THE
OFFICE OF THE IACC AND THE
EXECUTIVE SECRETARY FOR THE
IACC.
SHELLI, WOULD YOU TURN ON YOUR
VIDEO AND BRIEFLY SAY HI?
>>HI, GOOD MORNING, EVERYONE.
IT'S MY PLEASURE TO JOIN YOU
TODAY.
I LOOK FORWARD TO THE REST OF
THE MEETING, AND WELCOME.
>>BEFORE I DEPART I DO WANT TO
GIVE YOU A REVIEW OF THE AGENDA.
WE HAVE SOME REALLY WONDERFUL
PRESENTATIONS FOR YOU TODAY.
FIRST, WE'LL HEAR FROM THE
CENTERS FOR DISEASE CONTROL AND
PREVENTION, WHICH HAS RECENTLY
UPDATED THEIR AUTISM PREVALENCE
ESTIMATES, ON AN ANNUAL BASIS.
WE'LL HEAR AN UPDATE FROM
NATIONAL AUTISM COORDINATOR, AND
DISCUSS THE IACC COMMITTEE
BUSINESS THIS MORNING.
IN THE AFTERNOON I'LL REJOIN YOU
AS I MENTIONED FOR THE PUBLIC
COMMENT SECTION, AND THEN WE'LL
HAVE A PANEL PRESENTATION ON
INCREASING RACIAL EQUITY AND
IMPROVING DISPARITIES IN AUTISM
OUTCOMES.
WITH THAT I'LL SAY FAREWELL FOR
NOW AND TURN IT OVER TO SUSAN
WHO HAS HER OWN OPENING REMARKS
AND ROLL CALL AND APPROVAL OF
MINUTES.
>>THANK YOU, JOSH.
SO, WELCOME, EVERYONE, TO OUR
APRIL IACC MEETING, AND OUR TIME
TO RECOGNIZE AUTISM AWARENESS
MONTH.
A TIME THAT WE PROMOTE
ACCEPTANCE AND INCLUSION OF ALL
AUTISTIC PEOPLE AND TAKE ACTION
TO ADDRESS NEEDS OF AUTISTIC
INDIVIDUALS AND THEIR FAMILIES.
WITH THE GOAL OF IMPROVING
OUTCOMES.
AS DR. GORDON SAID, WE HAVE A
FULL AGENDA TODAY WITH UPDATES
FROM THE CDC, FEDERAL AGENCIES
AND PARTNER ORGANIZATIONS,
COMMITTEE BUSINESS, AND A
DISCUSSION THIS AFTERNOON ON
RACE AND AUTISM.
WE LOOK FORWARD TO HEARING FROM
ALL OF OUR SPEAKERS AND OUR
PUBLIC COMMENTERS TODAY.
I'LL MAKE A FEW HOUSEKEEPING
ANNOUNCEMENTS.
WE WANT TO REMIND MEMBERS TO
KEEP YOUR MICROPHONES OFF UNLESS
YOU'RE SPEAKING, ALSO KEEP YOUR
CAMERAS OFF DURING PRESENTATIONS
AND BREAKS.
YOU'RE WELCOME TO TURN ON YOUR
CAMERAS DURING COMMITTEE
DISCUSSIONS OR WHEN YOU'RE
RAISING YOUR HAND TO SPEAK.
AND IF YOU'RE A COMMITTEE MEMBER
OR FEDERAL ALTERNATE WHO WOULD
LIKE TO CONTRIBUTE A WRITTEN
COMMENT DURING OUR DISCUSSION
PERIODS, PLEASE USE THE ZOOM
RAISE HAND FUNCTION TO LET US
KNOW YOU'D LIKE TO COMMENT,
AND/OR SEND A CHAT TO SEND
COMMENTS HERE WITHIN THE ZOOM
CHAT, AND THAT COMMENT WILL BE
PICKED UP BY A MEMBER OF OUR
STAFF, MR. STEPHEN ISAACSON, WHO
YOU'VE SEEN AT OUR PREVIOUS
MEETINGS, WHO WILL READ YOUR
CHAT INTO THE MEETING FOR US SO
THAT EVERYONE ON NIH VIDEOCAST
CAN ALSO HEAR WHAT THE COMMENT
IS.
SO, NOW I'D LIKE TO GO THROUGH A
ROLL CALL SO WE KNOW WHO IS HERE
TODAY.
SO, WE JUST SAW DR. JOSHUA
GORDON, AND DR. SHELLI AVENOVOLI
FOR NIMH.
NEXT I'D LIKE TO CALL ON SKY
BASS FROM THE INDIAN HEALTH
SERVICE.
>>I'M HERE, GOOD MORNING,
EVERYONE.
>>GOOD MORNING.
ALICE KAU FOR NICHD.
>>HERE.
>>THANK YOU.
AMANDA BRYANTS FOR ACF?
>>HI, THANK YOU FOR THE NICE
WELCOME.
I'M VERY GLAD TO BE HERE.
>>THANK YOU, AMANDA.
GLAD TO HAVE YOU WITH US.
MITCHELL BERGER, ALTERNATE FOR
ANITA AT SAMHSA.
>>YES, I'M HERE.
>>THANK YOU, MITCHELL.
TIFFANY FARTIONE, FDA?
>>GOOD MORNING, I'M HERE.
>>THANK YOU.
MARIA FRYER FROM DEPARTMENT OF
JUSTICE?
>>GOOD MORNING, EVERYONE.
THANK YOU, I'M HERE.
GOOD TO BE HERE.
>>THANK YOU.
ELAINE HUBBLE, EPA?
>>GOOD MORNING, THANK YOU.
HAPPY TO BE HERE.
>>THANK YOU.
AND AMANDA RYKER FROM ACL, THE
ALTERNATE FOR ACL.
>>GOOD MORNING, I'M HERE.
>>THANK YOU.
AND DR. CHRISTY HARDEE,
ALTERNATE FOR NINDS.
OR FOR KOROSHETZ FROM NINDS, I
THINK DR. KOROSHETZ IS GOING TO
BE HERE PART OF THE DAY.
MAYBE NOT LOGGED ON YET.
MIA MOSER FROM HUD?
>>GOOD MORNING.
>>AND DEREA WILL JOIN US LATER?
>>THAT'S CORRECT.
>>GREAT.
THANK YOU.
>>HI, THIS IS WALTER KOROSHETZ,
NINDS.
SORRY, I HAD TROUBLE FINDING THE
RIGHT BUTTONS.
>>GLAD YOU'RE HERE.
ALLISON MARVIN FROM SSA?
>>GOOD MORNING, THANK YOU FOR
HAVING US.
>>THANK YOU, ALLISON.
MATTHEW MILLER?
>>HI, SCOTT PATTERSON HERE FOR
MATT MILLER.
>>FROM THE V.A., THANK YOU.
CAMILLA MYSTERY?
>>HERE.
>>THANKS.
THANK YOU.
LAUREN RASKIN RAMOS?
>>GOOD MORNING, I'M HERE.
>>THANK YOU.
KARYL RATTAY?
>>HI, EVERYONE.
>>HI.
KARYL.
JODY SIRACKI?
>>HI, GOOD MORNING.
>>GOOD MORNING.
FROM CMS.
COURTNEY FARRELL FROM NIH OFFICE
OF THE DIRECTOR?
OR COURTNEY FARRELL ACLAND.
AND I HAVE A NOTE COURTNEY WILL
BE HERE PART OF THE DAY, MIGHT
NOT BE LOGGED ON YET, AND JUDITH
COOPER?
>>YES, I'M HERE, BUT DEB IS
ALSO HERE.
>>OH.
>>YES, HELLO.
>>NICE TO SEE YOU.
THANK YOU.
DEBARA TUCCI.
LARRY WEXLER, DEPARTMENT OF
EDUCATION?
>>GOOD MORNING, YES, I'M HERE.
>>GOOD MORNING, LARRY.
NICOLE WILLIAMS FROM DEPARTMENT
OF DEFENSE?
AND I BELIEVE NICOLE IS HERE
BECAUSE WE WERE E-MAIL EARLIER
BUT PLAY NOT HAVE HER SOUND
WORKING OR SOMETHING RIGHT NOW.
SCOTT MICHAEL ROBERTSON,
DEPARTMENT OF LABOR?
>>GOOD MORNING, HAPPY NATIONAL
AUTISM MONTH.
>>THANK YOU!
>>THANKS.
>>SAME TO YOU.
AND CINDY LAWLER FOR NIEHS?
>>HI, EVERYONE, I'M HERE TODAY.
>>THANK YOU.
AND THEN WE'LL GO THROUGH THE
PUBLIC MEMBER LIST.
MARIA MERCEDES AVILLA?
>>GOOD MORNING, I'M HERE.
>>ALICE CARTER?
>>HERE, GOOD MORNING.
>>GOOD MORNING.
SAM CRANE?
AND I THINK THAT I DON'T HAVE A
NOTE SHE'S PLANNING TO BE HERE,
SHE MIGHT HAVE HAD SOMETHING
ELSE COME UP.
AISHA DICKERSON?
>>GOOD MORNING, I'M HERE.
>>GOOD MORNING.
DINA GASNER.
>>I'M HERE, THANKS.
>>THANK YOU.
VERONICA.
>>THEY SAID THEY ARE HERE.
>>THANK YOU.
ALICIA HALLADAY?
AND ALICIA IS ACTUALLY PLANNING
TO LOG ON FROM AN AIRPLANE, SO
MAY NOT BE SPEAKING, MIGHT BE
TEXTING MORE THROUGHOUT THE
MEETING.
DEANNA MEYER?
>>GOOD MORNING, EVERYONE, I'M
PRESENT.
>>THANK YOU.
LINDSEY NEBEKER?
>>HI, GOOD MORNING, EVERYONE,
I'M HERE.
>>GOOD MORNING.
JENNY MYFAM?
>>I'M HERE, GOOD MORNING,
EVERYONE.
>>GOOD MORNING.
JOSEPH PIVEN?
>>GOOD MORNING.
>>GOOD MORNING FROM THE
WASHINGTON, D.C. AREA ON A
BEAUTIFUL SPRING DAY!
>>THANK YOU SO MUCH, JAYLIN.
WELCOME.
SUSAN RIVERA?
>>GOOD MORNING.
HERE.
>>GOOD TO SEE YOU.
MATTHEW SEGAL?
>>HERE.
>>HELLO.
IVANOVA SMITH?
>>HELLO, I'M HERE.
>>THANK YOU.
HARI SHRINOVASN?
>>HI.
>>HELEN?
>>THANKS FOR A TERRIFIC PROGRAM
FOR THE DAY.
>>LOOKING FORWARD TO IT.
THANK YOU.
JULIE TAYLOR?
>>GOOD MORNING, EVERYBODY.
>>GOOD MORNING.
AND LASTLY, PAUL WONG.
>>GOOD MORNING, SUSAN.
GOOD MORNING, ALL.
>>GOOD MORNING.
AND DID I MISS ANYBODY?
ALL RIGHT.
SO, THAT CONCLUDES THE ROLL
CALL.
NOW WE'LL MOVE TO APPROVAL OF
MINUTES FROM JANUARY 2023
MEETING.
SO, THE DRAFT MINUTES WERE
POSTED ON THE WEB AND SENT OUT
TO MEMBERS OF THE COMMITTEE, AND
I WANTED TO KNOW IF SOMEBODY
WOULD LIKE TO PUT A MOTION ON
THE FLOOR TO APPROVE THE MINUTE.
OR IF THERE ARE ANY COMMENTS OR
QUESTIONS ABOUT THE MINUTES, ANY
CHANGES THAT ARE NEEDED?
WHICH ALSO YOU CAN FEEL FREE TO
SEND THEM TOO IF YOU NEED TO, IF
THEY ARE MINOR.
>>THERE'S A MOTION IN THE
COMMENTS, SUSAN.
>>OKAY.
WONDERFUL.
THANK YOU, I DIDN'T SEE IT.
>>SECOND THE MOTION.
>>PERFECT.
ALL IN FAVOR CAN YOU PLEASE
RAISE YOUR HAND IN ZOOM?
AND MEMBERS OF OUR TEAM WILL
JUST WATCH FOR THAT.
ALL RIGHT.
SO, ARE WE GOOD THERE WITH THE
TEAM?
SO IS THERE ANYONE WHO IS
OPPOSED?
YOU CAN PUT YOUR HANDS DOWN.
AND THEN WE WILL ASK IF ANYONE
IS OPPOSED TO ACCEPTING THE
MINUTES.
AND DEBRAS YOUR HAND STILL UP
FROM BEFORE OR IS IT OPPOSED?
OH, THAT'S DOWN.
OKAY.
IS ANYONE OPPOSED TO ACCEPTING
THE MINUTES?
I DON'T SEE ANY HANDS.
IS ANYONE ABSTAINING FROM
COMMENTING ON THE MINUTES OR
VOTING FOR THE MINUTES?
NO, LOOKS LIKE A MAJORITY VOTED
TO ACCEPT THE MINUTES.
OH, IVANOVA YOU'RE ABSTAINING.
ONE ABSTENTION.
>>NO, I'M NOT.
I'M SUPPORTING.
>>OH, SUPPORTING.
>>SORRY, I THOUGHT THAT'S WHAT
I WAS SUPPOSED TO PRESS.
>>IT'S CHALLENGING SOMETIMES.
LOOKS LIKE THE MAJORITY OF THE
COMMITTEE HAS VOTED TO ACCEPT
THE MINUTES SO WE'RE GOING TO
APPROVE THE MINUTES, AND IF
THERE ARE ANY OTHER MINOR
CHANGES YOU CAN ALWAYS SEND THEM
OUR WAY BUT WE WILL GET THE
FINAL MINUTES POSTED ON THE
WEBSITE AFTER THIS MEETING.
SO THANK YOU.
AND SO NOW I WILL TURN IT BACK
TO DR. AVENEVOLI TO INTRODUCE
OUR SPEAKERS FOR THE MORNING.
>>WONDERFUL.
THANKS, SUSAN.
LET'S GET STARTED WITH OUR
AGENDA.
SO, AS MANY OF YOU KNOW THE CDC
ADMM NETWORK HAS BEEN MONITORING
AUTISM PREVALENCE ACROSS THE
UNITED STATES SINCE 2000.
LAST MONTH, THE CDC RELEASED
UPDATED ESTIMATES OF AUTISM
PREVALENCE IN 8-YEAR-OLD AND
4-YEAR-OLD CHILDREN, AND HERE TO
DISCUSS THE LATEST FINDINGS WITH
US TODAY IS DR. KARYL RATTAY,
AND DIRECTOR OF DIVISION OF
HUMAN DEVELOPMENT AND
DISABILITY, AND IACC MEMBER, AND
TWO MEMBERS OF THE TEAM, DR.
MATTHEW MAENNER, CHIEF OF THE
CHILD DEVELOPMENT BRANCH AND DR.
KELLY SHAW, ACTING TEAM LEAD,
DISABILITY BRANCH, WE LOOK
FORWARD TO HEARING FROM YOU.
OUR PRESENTATION WILL BE 40 TO
45 MINUTES AND WE'LL ALLOW 15 TO
20 MINUTES FOR Q&A.
SO WE WANT TO SAVE TIME FOR
QUESTIONS AND ANSWERS.
THANK YOU ALL.
THANKS, KARYL.
>>THANK YOU, KELLY.
I HAVE THE GREAT PLEASURE OF
GETTING TO KICK US OFF WITH THIS
DISCUSSION.
I AM REALLY HAPPY TO GET TO
INTRODUCE YOU TO TWO AMAZING
MEMBERS OF THE CDC TEAM, AS MANY
OF YOU KNOW I JUST JOINED CDC BE
IN OCTOBER, BUT AM INCREDIBLY
IMPRESSED AND PROUD OF THE WORK
THAT THEY HAVE DONE AROUND ADAM
OVER THE PAST FEW YEARS
ESPECIALLY THE LAST FIVE YEARS,
AND WHILE I'VE KNOWN DR. MATT
MAENNER ENOUGH IN THE LAST FIVE
MONTHS TO KNOW HE'S NOT THE TYPE
TO BRAG ABOUT HIS OWN WORK, I
REALLY WANTED TO HIGHLIGHT A
TREMENDOUS MILESTONE OF THIS
RECENT RELEASE, WHICH MANY OF
YOU I THINK ARE AWARE OF, THE
WORK THIS TEAM HAS DONE TO
DECREASE THE TIME IT TAKES TO
GET THE DATA PUBLISHED AND TO
THE PUBLIC.
SO THE BIG MILESTONE HERE IS
THROUGH THE WORK OF THIS TEAM
AND CHANGING THE METHODS THEY
HAVE BEEN ABLE TO SHAVE OFF AN
ENTIRE YEAR FROM THE END OF THE
YEAR OF DATA COLLECTION TO THE
TIME IT MAKES IT OUT TO THE
PUBLIC, WHICH IS TREMENDOUS.
GOING BACK FIVE YEARS, I KNOW
SOME OF YOU WERE INVOLVED IN THE
DISCUSSIONS, THEY WERE HEARING
THAT THERE WAS A NEED TO GET THE
INFORMATION OUT MORE QUICKLY,
WHICH REALLY DROVE DISCUSSIONS
AND THINKING AROUND A CHANGE IN
METHODOLOGY, AND USING MORE
ADMINISTRATIVE DATA THAT WERE
AVAILABLE, LIKE EDUCATION DATA,
AND CLAIMS DATA, HEALTH DATA,
RATHER THAN REQUIRING EVERY
CHILD IN THE SYSTEM TO HAVE A
PROVIDER, AN INDIVIDUAL PROVIDER
IN THE ADAM SYSTEM DIAGNOSING
THEM.
AND THERE WERE CONCERNS AS THEY
WERE THINKING THROUGH THIS, AND
JUST REALLY PROUD OF HOW ALL OF
THE PARTNERS AGAIN INCLUDING
MANY OF YOU CAME TOGETHER TO
UNDERSTAND THE CHANGES IN
METHODS AND WHAT IT MEANT, AS
THE TEAM WAS DOING THIS WORK
THEY WERE ABLE TO VALIDATE THAT
THE CHANGE IN METHODS WERE
SHOWING SIMILAR RESULTS BUT ALSO
SHOWING MUCH INCREASED
EFFICIENCY, SO 50% DECREASE IN
EFFORTS TO COLLECT THE DATA,
WHICH IS ALSO NOT ONLY
DECREASING THE TIME FOR
PUBLICATION BUT ALSO VERY
IMPORTANTLY, OPENING THE DOORS
TO ENABLE WHETHER IT'S EXPANSION
IN AGE GROUPS, MATT WILL TALK
ABOUT 16-YEAR-OLD PUBLICATION,
WHICH IS NOW POSSIBLE, INCREASE
IN GEOGRAPHIC AREAS OR NUMBERS
OF KIDS BEING ABLE TO BE
INCLUDED, AND ALSO NOW WE'RE
WELL POSITIONED TO INCREASED
NUMBER OF ADAM SITES, AND NUMBER
OF -- OR CONDITIONS AS WELL.
I'M PROUD OF THE TEAM AND GLAD
TO HAVE AN OPPORTUNITY TO BRAG
ABOUT THEM.
VERY GRATEFUL FOR ALL OF YOUR
INPUT, YOUR PARTNERSHIPS IN THIS
WORK IS REALLY IMPORTANT.
AS WE GO FORWARD WE'RE
INTERESTED TO KNOW WHAT -- HOW
YOU ALL USE THESE DATA AND HOW
THESE DATA ARE HELPFUL TO YOU
FOR ACTION, FOR POLICY, FOR
ADDITIONAL RESEARCH, ET CETERA.
AND I JUST SAW SOMEONE IN THE
CHAT ASK WHAT IS ADAM.
ADAM IS -- MATT WILL PROBABLY
TALK IN MORE DETAIL ABOUT ADAM,
BUT ADAM IS OUR NATION'S AUTISM
SURVEILLANCE NETWORK, CURRENTLY
IT'S IN 11 SITES, AND THROUGH
ADAM FOR WELL OVER A DECADE NOW
WE'VE BEEN COLLECTING DATA ON --
BEGAN WITH KIDS AT AGE 8, BUT TO
BETTER UNDERSTAND PREVALENCE OF
AUTISM BUT ALSO SOME OF THE
CHARACTERS, DEMOGRAPHIC
INFORMATION AS WELL.
SO, WITH THAT, THANK YOU FOR
THAT QUESTION, AND I AM GOING TO
HAND IT OFF TO OUR GREAT LEADERS
AND SCIENTISTS, DR. MATT MAENNER
AND KELLY SHAW.
>>THANK YOU.
I DON'T KNOW IF THE SLIDES ARE
ON THEIR WAY.
THANK YOU FROM THE ADAMED IN
WORK.
HERE WITH DR. KELLY SHAW, IF YOU
GO TO THE NEXT SLIDE.
SO, THERE WERE TWO REPORTS
RELEASED A COUPLE WEEKS AGO.
SO, STILL FRESH FOR US, ONE WAS
ON EARLY IDENTIFICATION OF
AUTISM, AND ONE IS ON PREVALENCE
OF AUTISM FROM THE 11
PARTICIPATING COMMUNITIES IN THE
NETWORK, IN 2020, AND KELLY AND
I WILL REVIEW THE MAIN FINDINGS
OF THESE REPORTS AND HIGHLIGHT A
FEW OTHER NEW THINGS THAT EITHER
JUST CAME OUT FROM THAT ADDM
DATA OR WILL BE COMING OUT ANY
TIME NOW, AS SOON AS THE
JOURNALS PUBLISH THEM.
NEXT SLIDE PLEASE.
SO, IF IT SEEMS LIKE WE WERE
RECENTLY HERE GIVEN AN UPDATE TO
THE IACC, WE DID JUST LAST YEAR
IN JANUARY.
AS KARYL ALLUDED TO, WE'VE
CHANGED UP OUR TIME LINE TO MAKE
THINGS FASTER SO I THOUGHT I
WOULD TAKE A MOMENT JUST THE
TIMING OF THINGS, IS ONE OF MORE
CONFUSING ASPECTS OF
COMMUNICATING OUR WORK.
TO ORIENT EVERYBODY, I THOUGHT I
WOULD TALK ABOUT WHAT OUR NEW
TIME LINE LOOKS LIKE.
HISTORICALLY, THE SURVEILLANCE
DATA WOULD TYPICALLY COME OUT IN
THE FOURTH YEAR AFTER THE
SURVEILLANCE YEAR, SO THERE
WOULD BE LIKE THREE YEARS AND
CHANGE OF DATA COLLECTION, SO
THE 2014 DATA CAME OUT IN EARLY
2018, 2016 DATA CAME OUT IN
SPRING OF 2020, WHICH I THINK
SOME PEOPLE MAY NOT HAVE --
MISSED, BECAUSE THERE WERE OTHER
THINGS HAPPENING THAT MONTH.
BUT THEN WE IMPLEMENTED SOME NEW
METHODS TO TRY TO MAKE THINGS
MORE EFFICIENT AND FASTER, AFTER
THAT.
SO FOR THE 2018 SURVEILLANCE
YEAR WE WERE ABLE TO SPEED
THINGS UP A FEW MONTHS AND
PUBLISHED THE REPORTS AT THE END
OF 2021, AND THEN THIS YEAR WE
WERE PUBLISHING DATA ON 2020 IN
MARCH OF 2023, WHEREAS UNDER THE
OLD TIMELINE IT WOULD HAVE BEEN
BEEN MARCH OF 2024, SO WE WOULD
HAVE POTENTIALLY BEEN HERE A
YEAR FROM TODAY.
THESE CHANGES ALSO AFFORDED US
OTHER EFFICIENCIES AND ABILITY
TO DO MORE, AND TO COVER MORE
GROUND.
THERE'S CERTAINLY NO SHORTAGE OF
IMPORTANT DATA GAPS WE COULD BE
ADDRESSING, AND SO BY
IMPLEMENTING THESE MORE
EFFICIENT METHODS WE WERE ABLE
TO MAINTAIN THE BASIC INDICATORS
THE NETWORK PUTS OUT, SIMILARLY
WE WERE ALSO ABLE TO EXPAND OUR
TRACKING OF EARLY AUTISM
DETECTION IN 4-YEAR-OLDS TO ALL
SITES RATHER THAN JUST A SUBSET
OF SOME OF THE SITES, AND AS
KARYL MENTIONED WE BEGAN A NEW
ACTIVITY FOLLOWING UP THE
ADOLESCENTS AT AGE 16 TO LEARN
MORE ABOUT THE NEEDS OF
ADOLESCENTS ON THE SPECTRUM AND
TO THINK ABOUT TRANSITION
PLANNING AND POTENTIAL, YOU
KNOW, WHAT MIGHT BE IN STORE FOR
THEM AFTER HIGH SCHOOL.
NEXT SLIDE PLEASE.
SO, ADDM NETWORK IS A
POPULATION-BASED SURVEILLANCE
SYSTEM THAT MONITORS AUTISM
AMONG CHILDREN LIVING IN
MULTIPLE GEOGRAPHICALLY DEFINED
AREAS.
HERE ARE THE COUNTIES INCLUDED
IN THE MOST RECENT REPORTS,
SHOWN IN GREEN.
THE ADDM NETWORK REPORTED
PREVALENCE AMONG 8-YEAR-OLDS
EVERY TWO YEARS SINCE 2000, AND
THIS ISN'T A NATIONALLY
REPRESENTATIVE SAMPLE BUT IT
DOES COVER A LARGE POPULATION
AND IT HAS BOTH GEOGRAPHIC AND
DEMOGRAPHIC DIVERSITY IN THE
COMMUNITIES THAT ARE INCLUDED.
NEXT SLIDE PLEASE.
SO, THE WAY AUTISM WAS
ASCERTAINED, WHICH IS THE SAME
AS THE LAST REPORT AS WELL, IS
THAT ALL CHILDREN WERE INCLUDED
IF THEY WERE THE RIGHT AGE AND
LIVED IN THE SURVEILLANCE AREA
DURING THE SURVEILLANCE YEAR, SO
AT ANY TIME DURING 2020, AND
THEY HAD DOCUMENTATION OF ANY
ONE OF THE THREE OF THESE
THINGS.
THEY COULD HAVE A WRITTEN AUTISM
DIAGNOSIS FROM A QUALIFIED
PROFESSIONAL SOMEWHERE IN THE
CHART; THEY COULD HAVE SPECIAL
EDUCATION CLASSIFICATION OF
AUTISM FROM A SCHOOL; OR AN
AUTISM ICD OR BILLING CODE THAT
COULD COME FROM A VARIETY --
FROM HEALTH CARE PROVIDERS,
DIFFERENT ADMINISTRATIVE SERVICE
PROVIDERS, BUT IF THEY HAD ANY
ONE OF THOSE THREE THINGS THEY
WOULD BE COUNTED IN THE NUMBER
OF CHILDREN WITH ASD.
NEXT SLIDE PLEASE.
THE OVERALL RESULT AVERAGING
ACROSS ALL 11 SITES WAS 1 IN 36
CHILDREN WERE IDENTIFIED AS
HAVING AUTISM IN 2020 IN THE
ADDM SITES, THAT'S 2.8%, AND I
THINK THE NEXT SLIDE COMPARES IT
TO THE PREVIOUS REPORT WHICH
INCLUDED THE SAME 11 COMMUNITIES
IN 2018, 1 IN 44 CHILDREN, OR
2.3%.
NEXT SLIDE PLEASE.
SO THIS BAR CHART, THIS ISN'T
SHOWING THE NUMBERS OVER TIME.
THIS IS SHOWING THE 11 SITES IN
THE MOST RECENT YEAR FOR
8-YEAR-OLD CHILDREN, SO THE
HEIGHT OF THE BARS REPRESENT THE
OVERALL AUTISM PREVALENCE, BUT
THEN THE DIFFERENT COLORS
REPRESENT THE KIND OF THE LEVEL
OF INFORMATION THAT WE HAVE, HOW
WE KNOW THEY WERE IDENTIFIED, SO
THE GREEN BARS ARE INDICATING
CHILDREN WITH A WRITTEN
STATEMENT INDICATING THEY WERE
DIAGNOSED WITH AUTISM SOMEWHERE
IN THEIR RECORDS.
THE BLUE REFLECTS CHILDREN THAT
DIDN'T HAVE THAT WRITTEN
STATEMENT BUT WERE CLASSIFIED AT
SOME POINT AS HAVING RECEIVING
AUTISM SERVICES IN SPECIAL
EDUCATION.
AND PURPLE ARE CHILDREN THAT
DIDN'T HAVE THE WRITTEN
DIAGNOSIS OR SPECIAL EDUCATION
CLASSIFICATION, BUT DID HAVE AN
AUTISM ICD CODE ASSOCIATED WITH
THEIR RECORD.
AND SO ABOUT 3/4 OF THE CHILDREN
HAD A WRITTEN DIAGNOSTIC
STATEMENT, INDICATING AUTISM,
SOMEWHERE IN THEIR RECORD, AND
YOU CAN SEE THERE WAS STILL
PRETTY -- SOME VARIABILITY
BETWEEN THE LOW AND HIGH FROM
MARYLAND AT ABOUT 2.3%, TO
CALIFORNIA AT 4.5 I WANT TO SAY,
PERCENT, AND BUT THE OTHER SITES
WERE REALLY ALL BETWEEN THE 2.3
AND 3%, WHICH IS POTENTIALLY A
BIT NARROWER THAN PAST YEARS.
NEXT SLIDE.
SO IN ADDITION TO REPORTING THE
PREVALENCE BY THE STATE, WE ALSO
REPORT BY DIFFERENT DEMOGRAPHIC
GROUPS, AND ONE OF THE
INTERESTING FINDINGS FROM THIS
MOST RECENT REPORT IS THIS
CONTINUATION OF RACIAL AND
ETHNIC DIFFERENCES AND
PREVALENCE, ESPECIALLY IN
CONTEXT OF WHAT WAS OBSERVED IN
ADDM REPORTS PREVIOUSLY.
THIS CHOSE HISTORICAL DATA FROM
PREVIOUSLY PUBLISHED ADDM
FINDINGS STARTING WITH 2002
SURVEILLANCE, WHAT WAS PUBLISHED
IN THE REPORTS, AND SO THE
DIFFERENT COLOR DOTS REPRESENT
DIFFERENT RACIAL AND ETHNIC
GROUPS.
FIRST REPORT, JUST ONLY REPORTED
RACE PREVALENCE FOR NON-HISPANIC
WHITE AND NON-HISPANIC BLACK
CHILDREN, AND OTHER GROUPS WERE
ADDED OVER TIME BUT YOU CAN SEE
THAT FOR THE FIRST YEARS OF THE
ADDM NETWORK THERE WAS A
CONSISTENT DIFFERENCE IN THE
PREVALENCE WAS HIGHER AMONG
WHITE CHILDREN THAN AMONG BLACK,
HISPANIC, OR ASIAN/PACIFIC
ISLANDER CHILDREN, PERSISTING
THROUGH 2014 OVERALL, AND NEXT
SLIDE SHOWS THE NEXT COUPLE
YEARS, THE GAP STARTED TO NARROW
A LITTLE BIT, AND IN 2016 THERE
WERE NO OVERALL DIFFERENCES
BETWEEN WHITE AND BLACK
CHILDREN, AND THEN IN 2018 THERE
WERE OVERALL NO DIFFERENCES
BETWEEN ANY OF THE RACIAL GROUPS
BUT STILL WITHIN SOME
COMMUNITIES LIKE THERE WERE SOME
INSTANCES I THINK PARTICULARLY
WITH HISPANIC CHILDREN BEING
LESS LIKELY TO BE IDENTIFIED.
BUT THEN THE NEXT SLIDE, THIS
YEAR, THAT PATTERN HAS CONTINUED
WHERE OVER TIME ALL OF THE
GROUPS ARE INCREASING BUT THE
PREVALENCE AMONG WHITE CHILDREN
WAS INCREASING MORE SLOWLY
COMPARED TO THE OTHER GROUPS.
AND SO THIS PATTERN HAS
CONTINUED WHERE THE GAP HAS
CLOSED THAT CAUGHT UP AND NOW
THE DIRECTION OF THE DIFFERENCES
HAS REVERSED.
SO, ONE THOUGHT IS THIS COULD
INDICATE FOR EQUITABLE DETECTION
OF AUTISM AMONG ALL CHILDREN,
BUT IT'S ALSO TOO EARLY TO SAY
EXACTLY WHAT THIS MEANS JUST
BASED ON THIS ONE YEAR OF DATA
SHOWING THIS NEW PATTERN.
AND I THINK WITH THE NEXT SLIDE,
I THINK WE'LL TURN IT OVER TO
DR. SHAW TO TALK ABOUT THE OTHER
REPORT.
>>PERHAPS IT WAS DISCUSSED ON A
PRIOR IACC MEETING THE NUMBER
HAS BEEN MOVING AWAY FROM JUST
REPORTING MEDIAN AGE OF
DIAGNOSIS BECAUSE AS A METRIC,
OVER TIME, IT HAD LIKE A LOT OF
LIMITATIONS TO IT.
AND SO WE PUBLISHED AN ANALYSIS
THAT KIND OF WENT INTO THAT IN
EXCRUCIATING DETAIL I WOULD SAY,
BUT WHAT WE HAVE STARTED USING
IS CUMULATIVE INCIDENCE OF
AUTISM SPECTRUM DISORDER.
WHAT THIS MEASURE DOES IS
INCORPORATION INFORMATION ABOUT
PREVALENCE AS WELL.
THIS IS SHOWING ON THE X-AXIS
AGE IN MONTHS, AND WE'RE
GRAPHING CUMULATIVE INCIDENCE OF
DIAGNOSIS OR SPECIAL EDUCATION,
REFERRED TO AS IDENTIFICATION
OVER AGE.
AND WHAT WE'RE ABLE TO DO IS TO
COMPARE THE CHILDREN WHO ARE 4
IN 2020 TO CHILDREN WHO WERE 8
IN 2020, AND WE CAN KIND OF SEE
THE TRAJECTORY OF HOW THEY ARE
ACCUMULATING THESE
IDENTIFICATIONS OF ASD OVER
TIME.
AND WHAT WE'VE SEEN SINCE WE'VE
STARTED USING THIS MEASURE IS
THAT EACH YEAR THE YOUNGER GROUP
HAS A HIGHER CUMULATIVE
INCIDENCE OF IDENTIFICATION BY
48 MONTHS OF AGE.
SO, THERE ARE INCREASES IN
IDENTIFICATION OVER TIME THAT WE
CAN SEE WITH THIS APPROACH.
AND THEN THE NEXT SLIDE.
FIRST A BLANK GRAPH, EXPLAIN IT
BEFORE FLASHING STUFF UP THERE,
WHAT WE WERE INTERESTED IN THIS
YEAR, WELL, FOR THE 2020
SURVEILLANCE YEAR OF COURSE WAS
WHETHER WE COULD LOOK AT THE
IMPACTS OF COVID, AND SO BEING
ABLE TO BREAK APART INCIDENCE BY
CALENDAR MONTH, LOOKING OVER
TIME HELPED US GET AT THAT
QUESTION OF WHAT HAPPENED TO
EARLY IDENTIFICATION OF AUTISM.
SO, WHAT WE DID WAS TOOK AGAIN
THIS COMPARISON OF THE
4-YEAR-OLDS IN 2020 TO
8-YEAR-OLDS IN 2020, AND WE
COMPARED THE FIRST FOUR YEARS OF
LIFE TO SEE WHAT WAS GOING ON
WHEN 8-YEAR-OLDS WERE IN THE
SAME WINDOW TO THE 4-YEAR-OLDS.
NEXT SLIDE.
WHAT WE WERE ABLE TO SEE, BLUE
BARS INDICATE MORE
IDENTIFICATION, WE ALSO DID THIS
WITH EVALUATIONS AND IT SHOWED
VERY SIMILAR PATTERNS PRIOR TO
MARCH OF 2020 FOR THE
4-YEAR-OLDS, THERE WERE
INCREASES, MUCH MORE AUTISM
DETECTION GOING ON COMPARED TO
WHAT 8-YEAR-OLDS EXPERIENCED
FOUR YEARS PREVIOUSLY.
ON THE NEXT SLIDE HERE WE CAN
SEE WHERE THAT PROGRESS WAS
REALLY WIPED OUT BY THE
PANDEMIC, SO IT KIND OF JUST
WENT OFF A CLIFF IN MARCH OF
2020 FOR THE 4-YEAR-OLDS, AND
THEY BEGAN TO SEE FEWER
IDENTIFICATIONS AND EVALUATIONS
COMPARED TO WHAT THE 8-YEAR-OLDS
HAD SEEN FOUR YEARS PRIOR.
, A STRIKING FINDING BECAUSE OF
THE IDENTIFICATION.
NEXT SLIDE.
THIS SLIDE SUMMARIZES THE
DIFFERENT -- DATA RELEASE IS NOT
JUST THE REPORT.
IT'S I THINK -- PEOPLE OFTEN
PREFER MAYBE NOT READING REPORTS
BUT HAVING SOME OF THE MORE
FRIENDLY COMMUNICATIONS PRODUCTS
THAT WE OFFER, WE OF COURSE
UPDATE THE WEBSITE WITH THE
NEWEST DATA, THE COMMUNITY
REPORT FOR AUTISM IS A PRODUCT
THAT WE REALLY APPRECIATE BEING
ABLE TO PROVIDE FOR COMMUNITIES
BECAUSE IT SUMMARIZES FINDSS FOR
FOLKS BUT ALSO EACH STATES THAT
ITS OWN PAGE WHERE THEY PICK
WHAT THEY THEY THINK EY THINK YT
IMPORTANT.
THOSE HAVE MAXIMUM
ACCESSIBILITY.
MANY DATA VISUALIZATIONS YOU'VE
SEEN TODAY ARE AVAILABLE FOR
RESEARCHERS WHO WANT TO TALK
ABOUT ADDM DATA.
WE TRY TO PROVIDE DATA
VISUALIZATION, ALLOWING FOLKS TO
LOOK AT DATA FROM FOUR FEDERAL
DATA SOURCES, AND IT INCLUDES,
YOU KNOW, ALL COMMUNITIES, SO
YOU CAN SEE WHAT DATA ARE
AVAILABLE FOR THEIR COMMUNITIES.
AND THEN, MATT, DID YOU WANT TO
BRIEFLY MENTION --
>>YES, ONE OF THE THINGS WE DID
THIS YEAR WAS THE CDC'S
PUBLICATION HAS BEEN ENCOURAGING
PAIRED COMMENTARY WHERE WE CAN
SHARE THE DRAFTS TO HAVE A
COMMENTARY COME OUT, AND RATHER
THAN GOING LIKE AN ACADEMIC
ROUTE WE THOUGHT THIS WAS LIKE A
GREAT OPPORTUNITY TO, YOU KNOW,
INCLUDE A COMMUNITY PERSPECTIVE
ON WHAT THESE DATA MEAN, POINT
OUT MAYBE WHAT NEEDS TO BE DONE,
AND REALLY HAVE THAT
PARTICIPATION LIKE RIGHT FROM
THE INSTANT THAT IT'S PUBLISHED
SO WE WERE PLEASED TO HAVE THIS
ACCOMPANYING COMMENTARY IN STAT
NEWS, TWO MEMBERS THAT THIS
COMMUNITY IS FAMILIAR WITH.
IT WAS GREAT TO WORK WITH THEM.
AND SO WE'RE JUST REALLY GLAD TO
BE ABLE TO HAVE THAT RIGHT AT
THE BEGINNING.
THESE DATA ARE MEANT TO BE USED
AND TO HELP UNDERSTAND WHAT'S
HAPPENING AND TO IDEALLY HELP
INFORM GOOD DECISIONS ABOUT WHAT
NEEDS TO BE DONE AND SO WE'RE
PLEASED FOR THEIR COLLABORATION
ON THIS.
>>OKAY.
AND THEN NEXT SLIDE.
SO WE OF COURSE HAD THE DATA
RELEASE, WHICH WAS A LOT OF
THINGS, BUT THAT WASN'T EVEN ALL
THAT WAS GOING ON EARLY IN THIS
YEAR.
WE HAD A FEW PAPERS SUDDENLY,
YOU KNOW, LIKE COME THROUGH THE
PUBLICATION PIPELINE, SOME
UNEXPECTEDLY, BUT IT'S ALWAYS,
YOU KNOW, NICE FOR THAT TO WORK
OUT.
SO, NEXT SLIDE.
FIRST, I'M GOING TO TALK ABOUT
THE FIRST EVER ADOLESCENT DATA
THAT CDC WAS ABLE TO PUBLISH.
SO AS MATT MENTIONED FIVE SITES
FOLLOWED UP ON CHILDREN WHO
INITIALLY CAME TO ATTENTION WITH
SYMPTOMS OR INDICATIONS BY AGE
8, AND THE SITES WERE ABLE TO
FOLLOW THEM UP THROUGH AGE 16,
AND COLLECT SIMILAR INFORMATION
AND KIND OF SEE WHAT HAPPENED
OVER TIME.
SO THERE'S LOTS OF REALLY GOOD
INFORMATION IN THAT REPORT.
I WAS JUST GOING TO HIGHLIGHT
ONE FIGURE, THIS SHOWS THE
PERCENT OF THESE CHILDREN WITH
CO-OCCURRING CONDITIONS BY AGE 8
YEARS, AND THEN BY AGE 16 YEARS.
AND SO WHAT YOU CAN REALLY SEE
HERE IS THAT THESE CHILDREN
CONTINUED TO BE IDENTIFIED WITH
DIFFERENT CO-OCCURRING
CONDITIONS OVER TIME, THIS COULD
BE IMPORTANT AND INDICATE KIND
OF A NEED FOR SPECIAL
CONSIDERATIONS OR PARTICULAR
SERVICES AS THESE CHILDREN AGE,
AND ESPECIALLY IN THAT
TRANSITION TO ADULTHOOD PERIOD,
THESE COULD BE REALLY IMPORTANT.
NEXT SLIDE PLEASE.
AND THEN WE ALSO BROUGHT SOME
POPULATION DATA, THIS NEWLY
DEFINED PROFOUND AUTISM, WE
WANTED TO KIND OF AT LEAST
DESCRIBE WHAT THAT LOOKED LIKE
IN POPULATION DATA.
AND SO BOTH THE PRIOR STUDY AND
THIS STUDY WERE LED BY MICHELLE
HUGHES, WHAT SHE WAS ABLE TO DO
WAS SHE LOOKED OVER FROM 2000 TO
2016 TO SEE WHAT THE POPULATION
PREVALENCE WAS OF PROFOUND
AUTISM, AND SHE FOUND 27% OF
CHILDREN WITH ASD HAD MET THIS
DEFINITION OF HAVING AN I.Q.
LESS THAN 50 OR BEING NON-OR
MINIMALLY VERBAL.
AND WHAT THIS GRAPH SHOWS IS
WHAT THE PREVALENCE LOOKED LIKE
OVER TIME, FOR BOTH PROFOUND AND
NON-PROFOUND AUTISM, WHERE YOU
CAN SEE INCREASES BUT THERE WERE
EVEN GREATER INCREASES IN
NON-PROFOUND AUTISM THAN
PROFOUND AUTISM.
AND DATA ARE MISSING FOR 2012
AND 2014 BECAUSE VERBAL STATUS
WAS NOT COLLECTED FOR THOSE
YEARS.
AND THIS IS PENDING PUBLICATION
ANY DAY IN PUBLIC HEALTH
REPORTS, HOPEFULLY SOON.
NEXT SLIDE.
WE ALSO PUBLISHED THE FIRST
STATEWIDE AND COUNTY-LEVEL ASD
ESTIMATES.
WE HAD SEVEN SITES PARTICIPATE
IN A PILOT STUDY, WHERE WHAT
THEY DID WAS THEY COMBINED
STATEWIDE HEALTH DATA AND
EDUCATION DATA, SO THEY LINKED
DATASETS TOGETHER TO PROVIDE
THESE ESTIMATES.
AND ESSENTIALLY THIS GRAPH IS
SHOWING THE COUNTY LEVEL
PREVALENCE OF AGES 3-21, WHICH
AT THE COUNTY LEVEL RANGED FROM
.5% TO 2.9% IN THIS DATASET.
WHAT WE THOUGHT WAS IMPORTANT
AND INTERESTING ABOUT THIS AS
WELL WE WERE ABLE TO COMPARE
WITHIN THE ADDM -- YOU KNOW,
STUDY AREAS DOING THE FULL ADDM
METHODS FOR CHILDREN WHO WERE 8,
WE LOOKED AT PREVALENCE AMONG
8-YEAR-OLDS FROM THIS METHOD
COMPARED TO THE FULL ADDM AND
THEY WERE SIMILAR FOR CHILDREN
WHO WERE 8.
AND SO WE THINK THIS IS A REALLY
EXCITING METHOD THAT COULD BE
USEFUL.
I MEAN, THE TRADEOFF IS THAT IT
DOESN'T HAVE AS MUCH DETAILED
INFORMATION ABOUT CO-OCCURRING
INTELLECTUAL DISABILITY OR AGE
OF DIAGNOSIS, BUT IT COULD
REALLY POTENTIALLY HELP FOLKS
WHEN THEY DON'T HAVE MORE
RESOURCE INTENSIVE METHODS TO
GET DATA FOR AREAS THAT HAVE
NEVER HAD DATA BEFORE.
SO, THE NEXT SLIDE.
OH, SORRY.
SO THIS WAS THE GRAPH THAT KIND
OF SHOWED THE -- WHEN WE
COMPARED THIS IN THE STUDY AREAS
AGE 8 AND AGE 4, SO FOR AGE 8 I
THINK IT WAS JUST ON AVERAGE 6%
DIFFERENT FROM THE FULL ADDM
METHODS DESCRIBED, FOR AGE MORE
A LOT MORE VARIABLE.
THIS LIKELY REFLECTED THE
DIFFERENT KINDS OF DATA THAT
PEOPLE WERE BRINGING IN TO THIS
PROJECT COMPARED TO WHAT THEY
USED FOR ADDM.
AND SO THE NEXT SLIDE SHOULD BE
ACKNOWLEDGMENTS I THINK.
>>WE ARE REALLY PRIVILEGED IN
THAT WE CAN SHARE WITH YOU ALL
OF THIS WORK BUT IT TAKES AN
ENORMOUS TEAM AND PEOPLE HAVE
WORKED SO, SO HARD OVER THE PAST
SEVERAL YEARS, THROUGH REALLY
CHALLENGING CIRCUMSTANCES AND WE
JUST REALLY APPRECIATE THAT WE
GET TO WORK WITH SUCH AN AMAZING
AND DEDICATED GROUP OF PEOPLE.
>>THANK YOU SO MUCH.
ABSOLUTELY, WE REALLY APPRECIATE
THE TIME YOU TOOK AND EXCELLENT
PRESENTATION.
OKAY.
LET'S DIVE INTO QUESTIONS.
YETTA, YOUR HAND WAS UP FIRST.
>>GOOD MORNING.
I THINK LARRY HAD HIS HAND UP
AND THEN I'M NEXT, I DON'T WANT
TO SKIP IN LINE
>>I WAS RELYING ON THE
COMPUTER.
WE'LL COME BACK TO YETTA.
>>THANK YOU.
>>YES, YES.
>>YOU WANT ME TO GO?
>>YES, LARRY, PLEASE GO FIRST.
>>I WOULD HAVE DEFERRED TO THE
COMPUTER TOO.
FIRST OF ALL, THANK YOU.
THOSE DATA ARE SO COMPELLING.
I KNOW YOU'VE BEEN ENGAGED IN
THIS FOR DECADES AT THIS POINT.
YOU'RE AWARE I MANAGED THE
IDeA DATA, AND WE REMAIN
PERFECTLY WILLING AND HAPPY TO
SUPPLY YOU WHATEVER DATA YOU
NEED FROM OUR SHOP.
SO --
>>THANK YOU.
>>PLEASE FEEL FREE TO CONTACT
ME.
YOU PROBABLY ALREADY GO DIRECTLY
TO MY DATA TEAM, WHICH IS FINE.
THE ONE QUESTION I HAD, HAVE
Y'ALL BEGUN TO DO ANY
COMPARISONS INTERNATIONALLY, AS
TO WHERE THIS -- THESE LATEST
NUMBERS LINE UP?
I THOUGH KOREA DOES -- SOUTH
KOREA DOES A PRETTY GOOD
PREVALENCE.
I WON'T BELABOR IT.
YOU GET THE GIST.
THANK YOU.
>>YEAH.
>>FIRST OF ALL, THANK YOU FOR
THE OFFER TO COLLABORATE.
AND IT'S SOMETHING WE INTEND TO
TAKE YOU UP ON.
WE REALLY -- I THINK THE
EDUCATION SYSTEM IS CRITICALLY
IMPORTANT TO SERVING CHILDREN
WITH AUTISM.
SOMETIMES IT'S THE ONLY SERVICE
PROVIDER IN A CERTAIN COMMUNITY
THAT PROVIDES ANY MEANINGFUL
SUPPORT AND SERVICES, SO WE
WOULD LOVE TO TALK MORE ABOUT
HOW WE CAN, YOU KNOW, USE WHAT
WE HAVE TO LEARN WHAT'S
HAPPENING AND WHAT'S NEEDED.
IN TERMS OF INTERNATIONAL
COMPARISONS, I'M RUSTY.
WE HAVEN'T GONE BACK AND TRIED
TO REFRESH THE LATEST.
WE DO KEEP LISTS OF AUTISM
PREVALENCE STUDIES ON THE CDC
WEBSITE THAT WE UPDATE, I THINK
MAYBE EVERY QUARTER OR SIX
MONTHS, SO WE WILL GO RE-READ
THAT.
WE'VE MOSTLY BEEN PAYING MORINGS
TO WHAT THE -- - MORE ATTENTION
TO THE NATIONAL SURVEYS, THEY
SOMETIMES COMBINE YEARS
TOGETHER.
WITH THIS LATEST DATA, CERTAINLY
WITH THE NATIONAL SURVEYS IT
SEEMS LIKE THEY ARE IN THE BALL
PARK WHERE WE'RE SEEING SIMILAR
THINGS BUT, YOU KNOW, EVERY
COMMUNITY IS SO DIFFERENT TOO,
AND I THINK THE VARIABILITY IS
ALWAYS, FOR ME, THE REALLY
INTERESTING PART RATHER THAN
JUST LIKE WHAT THE BIG NUMBER
IS.
>>YEAH, I THINK THESE NUMBERS,
YOUR NUMBERS, ARE MUCH MORE IN
LINE WITH SOUTH KOREA'S FROM TWO
OR THREE OR FOUR YEARS AGO.
>>YEAH.
>>SEEN AS INCREDIBLY HIGH, NOT
THAT OURS WEREN'T, BUT I THINK
IT'S THE NUMBER APPROACH IN
SOUTH KOREA BUT I DON'T KNOW
WHAT THEIR ABSOLUTE LATEST
NUMBERS ARE.
THANK YOU FOR YOUR WORK ON THIS.
>>THANK YOU.
>>OKAY.
YETTA?
>>THANK YOU, GOOD MORNING, GOOD
TO SEE YOU BOTH.
HOW MANY STUDIES HAVE BEEN
REPRESENTED ACROSS ADDM NETWORKS
SINCE 2020?
YOU MIGHT NOT KNOW OFF TOP OF
YOUR HEAD BUT I'M CURIOUS.
>>YOU MEAN SINCE 2000?
>>SINCE 2000.
>>SINCE THE BEGINNING?
>>YES, SINCE THE BEGINNING.
>>I THINK 20.
>>YEAH.
>>SOUND S ABOUT RIGHT.
>>IT'S ON OUR DATA
VISUALIZATION SURVEY, THAT MIGHT
BE THE EASIEST WAY, BUT WE DID
UPDATE THAT NUMBER WHEN WE WERE
DOING UPDATES THIS YEAR.
I THINK IT'S 20.
>>I WAS CURIOUS.
CAN YOU TALK ABOUT WHAT NEXT
STEPS ARE TO COLLECT DATA?
MAYBE AT A NATIONAL LEVEL, I'M
ALWAYS GOING TO PUSH THAT, WANT
TO KNOW IF THERE ARE THOUGHTS IN
THE PIPELINE ABOUT THAT.
AND MY FINAL QUESTION, SPEAKING
TO WHY BLACK CHILDREN ARE BEING
DIAGNOSED CAN CO-OCCURRING I.D.
>>THE FIRST QUESTION, WHAT'S
NEXT, WE HAVE A BUNCH OF STUFF
COMING OUT THIS SPRING, I THINK
WE'VE ALSO LEARNED AT THE
BEGINNING OF THE CALENDAR YEAR
THAT CONGRESS INCLUDED
ADDITIONAL RESOURCES TO EXPAND
THE NUMBER OF ADDM SITES AND
THEN ALSO TO INCORPORATE
CEREBRAL PALSY TRACKING IN A FEW
OF THEM.
WE'RE WAITING FOR PEOPLE TO PUSH
A BUTTON BEFORE WE CAN TALK
ABOUT EXACTLY WHAT IN A -- THAT
WILL LOOK LIKE BUT THE TEAM HAS
BEEN WORKING HARD TO DO WHAT
CONGRESS ASKED US TO DO.
IN TERMS OF, YOU KNOW, THE
FUTURE, IT'S HARD TO PREDICT,
BUT I THINK THAT OVER THE PAST
SEVERAL YEARS THIS PROGRAM HAS
BASICALLY OVERHAULED JUST ABOUT
EVERY PART OF HOW IT DOES ITS
WORK TO BE MORE EFFICIENT, WE'VE
BEEN ABLE TO SCALE ADDING AGE
GROUPS.
KELLY TALKED ABOUT HER WORK
BEING ABLE TO GET SOME DATA FOR
LIKE A WHOLE STATE FOR EVERY
COUNTY IN THE STATE, SO I THINK
WE'RE WELL SITUATED, TO DO THESE
THINGS, BUT THEN IT'S JUST A
QUESTION OF, YOU KNOW,
PRIORITIES AND WHETHER, YOU
KNOW, WHETHER WE'RE ASKED TO DO
IT AND HAVE THE RESOURCES TO DO
THAT BECAUSE AT THE SAME TIME,
YOU KNOW, WE HAVE TAKEN A
CAREFUL APPROACH TO THINK ABOUT
WHAT ARE THE INDICATORS THAT
PEOPLE REALLY EXPECT AND NEED
FROM THE ADDM NETWORK AND THAT
DOES INCLUDE THINGS LIKE
CO-OCCURRING INTELLECTUAL
DISABILITY, DOES INCLUDE THINGS
LIKE HOW EARLY ARE CHILDREN
GETTING IDENTIFIED WITH AUTISM,
AND THAT IS STILL -- REQUIRES
MORE INTENSIVE DATA COLLECTION
AND AS THINGS GET MORE
ELECTRONIC OR STRUCTURED THAT
COULD CHANGE TOO BUT I THINK
WE'RE WELL POISED TO DO
SOMETHING, JUST DEPENDS ON THAT
TRADEOFF BETWEEN DEPTH AND
BREADTH AND SPEED AND RESOURCES.
BUT I THINK WE'VE SHOWN THERE'S
DIFFERENT WAYS IT COULD BE DONE.
IN TERMS OF THE DIFFERENCES IN
PREVALENCE AMONG CO-OCCURRING
INTELLECTUAL DISABILITY, FOR ME
THAT WAS ONE OF THE SURPRISES IN
THE DATA THIS YEAR.
HISTORICALLY LIKE GOING BACK,
LIKE ON THAT SLIDE THAT SHOWED
LIKE YEAR OVER YEAR WHAT THE
DIFFERENCES WERE, WHEN MORE
WHITE CHILDREN WERE IDENTIFIED
WITH AUTISM OVERALL THAN BLACK
CHILDREN IT SEEMED LIKE MAYBE
ONE EXPLANATION FOR THAT HIGHER
CO-OCCURRENCE OF INTELLECTUAL
DISABILITY IS JUST THAT THOSE
WERE THE KIDS THAT WERE MORE
LIKELY TO COME TO ATTENTION.
AND IF THERE WERE DIFFERENCES ON
AVERAGE ON A GROUP LEVEL ABOUT
ACCESS TO SERVICES MAYBE
CHILDREN WITH INTELLECTUAL
DISABILITY WOULD BE MORE LIKELY
TO BE PICKED UP THAN CHILDREN
WITHOUT.
AND WE DO SEE THAT IN DATA WHEN
YOU LOOK AT THE AGE OF
DIAGNOSIS, THAT'S ONE OF THE FEW
TIMES WE COMPARE AGES, LIKE
CHILDREN WITH INTELLECTUAL
DISABILITY TEND TO BE DIAGNOSED
AT VERY YOUNG AGES, WITH AUTISM,
THAN CHILDREN THAT DON'T HAVE
INTELLECTUAL DISABILITY.
BUT AS THE MORE AND MORE
CHILDREN WERE BEING DETECTED AND
THE PREVALENCE NUMBERS EVENED
OUT AND THIS YEAR THE PREVALENCE
OF AUTISM AMONG BLACK CHILDREN
EXCEEDED WHITE CHILDREN, IT WAS
A BIT OF A SURPRISE TO ME AT
LEAST THAT THAT PROPORTION WITH
CO-OCCURRING INTELLECTUAL
DISABILITY WASN'T -- DIDN'T
REALLY BUDGE.
AND SO THESE DATA TELL US WHAT
IS HAPPENING BUT THEY DON'T
ALWAYS TELL US WHY, AND THERE
ARE DIFFERENT IDEAS ABOUT WHAT
THIS COULD MEAN, IT COULD MEAN
THERE STILL COULD BE
UNDERIDENTIFICATION IN THAT
GROUP, AMONG BLACK CHILDREN.
WE DON'T KNOW WHAT THE CEILING
WOULD BE.
IT COULD ALSO BE -- SOMEONE
PROPOSED COULD BE LACK OF EARLY
INTERVENTION, THAT COULD
POTENTIALLY, YOU KNOW, IMPROVE
THAT.
YOU KNOW, THEIR PERFORMANCE
EARLY.
WE DON'T KNOW.
BUT IT'S CERTAINLY AN IMPORTANT
FINDING.
>>DETERMINANTS OF HEALTH.
>>YEAH.
>>UPSTREAM FACTORS OF MATERNAL
HEALTH, AND WHICH WE KNOW THERE
ARE DISPARITIES CAN ALSO PLAY A
ROLE IN INTELLECTUAL DISABILITY.
SO WE CAN'T SEE IN OUR DATA THE
REASON WHY, BUT IT'S DEFINITELY
CONCERNING.
>>YEAH.
AGAIN, THERE'S NO BIOLOGICAL
REASON WHY AUTISM PREVALENCE OR
CO-OCCURRING INTELLECTUAL
DISABILITY SHOULD BE DIFFERENT
BETWEEN THE DIFFERENT GROUPS SO
I THINK IT DOES WARRANT
CONSIDERATION OF LIKE WHAT OTHER
FACTORS ARE AT PLAY.
>>THANK YOU SO MUCH.
I APPRECIATE YOUR WORK.
>>GOOD TO SEE YOU.
>>THANK YOU.
SO YOU'RE NEXT.
>>THEY SAY COMMUNITIES OF COLOR
HAVE BEEN SHOUTING FROM THE ROOF
TOP FOR DECADES CHILDREN HAVE
BEEN HISTORICALLY MISDIAGNOSED,
OPPOSITIONAL DEFIANCE DISORDER,
RELATED DIAGNOSES, SIMILARLY
RATHER THAN RECEIVING
CLASSIFICATION BY A SCHOOL
DISTRICT FOR ADEQUATE SERVICES,
CHILDREN ARE LIKELY TO BE
LABELED AS EMOTIONALLY DISTURBED
OR MISLABEL AS THEY TRAVEL ON
PRE-K TO PRISON POPULATION.
I SEE A LOT OF PEOPLE JUMPING ON
THE BANDWAGON WITH ALARMIST
RHETORIC TO CDC DATA, LITTLE TO
NO PRACTICAL EFFORT NOR
RESOURCES BEING DEVOTED TO
CULTURALLY AFFIRMING CARE FOR
OUR KIDS, IT'S DISGUSTING,
PEOPLE STOP NEED TO USING US IN
NUMBERS WHILE CONVENIENT WHILE
POLICIES REGARDING RESTRAINT,
INSTITUTIONAL SURVEILLANCE, THAT
HARM US, WE AREN'T YOUR TOKENS.
WITHIN THE SPAN OF ONE YEAR HAVE
SEEN SIGNIFICANT REVISION OF
PROPOSED CRITERIA FOR PROFOUND
AUTISM, I WOULD LIKE YOU TO
CLARIFY THE JUSTIFICATION FOR
EMERGING GROUPS OF INDIVIDUALS
WITH ALLEGED I.Q. UNDER 50 WITH
GROUPS OF MINIMALLY NON-SPEAKING
INDIVIDUALS, GIVEN FOR MANY
NON-SPEAKING INDIVIDUALS I.Q. IS
OFTEN IMPROPERLY CALCULATED.
I ALSO WANTED TO KNOW DIFFERENCE
BETWEEN INDIVIDUALS WHO HAVE
I.Q.s UNDER 50 WHO ARE
SPEAKING, COMPARED TO THOSE WHO
ARE NON-SPEAKING BECAUSE
INTELLECTUAL DISABILITY ISN'T
SYNONYMOUS WITH BEING
NON-SPEAKING, IT CAN CO-OCCUR
WITH IT BUT SO CAN AVERAGE I.Q.
AND INTELLECTUAL GIFTEDNESS.
THEY SAY CONFLATING THE TWO
UNNECESSARILY CAN CREATE A LOT
OF CONCERNS.
>>WELL, THANK YOU.
WE APPRECIATE THE COMMENT.
AND CERTAINLY LIKE THE RACIAL
DIFFERENCES IN PREVALENCE AND
THE REPORTING OF DISPARITIES IN
CO-OCCURRING INTELLECTUAL
ABILITY, IT'S SOMETHING THAT,
YOU KNOW, THESE HAVE BEEN
CERTAINLY WITH CO-OCCURRING
INTELLECTUAL DISABILITIES HAVE
BEEN A PERSISTENT FINDING AND
SOMETHING WE'VE BEEN CALLED TO
PUT MORE EMPHASIS IN TALKING
ABOUT RATHER THAN JUST SETTING
IT ASIDE.
THERE IS A LOT MORE TO
UNDERSTAND AND CERTAINLY A LOT
MORE TO DO.
>>I'LL SAY TO YOUR POINT ABOUT
THAT PEOPLE HAVE BEEN AROUND, I
THOUGHT THAT WAS DEFINITELY THE
MESSAGE OF THE PREPARED
COMMENTARY IN STAT THAT WAS
WRITTEN WITH THE RELEASE AS
WELL, WHICH WAS ESSENTIALLY KIND
OF WHAT PEOPLE IN THE COMMUNITY
KNOW IS THESE, YOU KNOW, THAT
IT'S NO SURPRISE, SO I THOUGHT
THAT WAS ALSO A GOOD COMMENT.
CHANGE IN PROFOUND --
>>PROFOUND AUTISM ANALYSIS, SO,
I THINK IT'S REALLY IMPORTANT TO
CLARIFY WHAT CDC'S ROLE IS IN
TERMS OF, YOU KNOW, SETTING
POLICIES OR STANDARDS FOR HOW
CHILDREN ARE CLASSIFIED.
SO OUR ROLE IS REALLY TO REPORT
DATA AND TO CONTRIBUTE DATA TO
THESE CONVERSATIONS, AND THESE
IDEAS THAT ARE BEING, YOU KNOW,
PROPOSED BY, YOU KNOW, NO ONE
FROM CDC HAD A ROLE ON "THE
LANCET" COMMISSION THAT
DEVELOPED THIS DEFINITION, BUT
IT IS POTENTIALLY AN IMPORTANT
IDEA ABOUT MAYBE THERE'S A WAY
TO DEFINE A SET OF
CHARACTERISTICS THAT APPLY TO
SOME PEOPLE ON THE SPECTRUM, AND
IT'S NOT -- WE DID OUR BEST TO
APPLY THOSE CHARACTERISTICS TO
THE DATA WE HAD RATHER THAN US
DECIDING WHAT THEY SHOULD BE, WE
TOOK THIS DEFINITION AND WITH
THE UNDERSTANDING THAT LIKE A
LOT OF THINGS INCLUDING
DEFINITION OF AUTISM ITSELF, IT
WILL PROBABLY BE ITERATIVE, IT
WILL PROBABLY BE, YOU KNOW, AS
PEOPLE LEARN ABOUT WHAT'S USEFUL
AND WHAT, YOU KNOW, WHAT KNOWS
CHOICES REALLY MEAN WHEN TRYING
TO DESCRIBE DIFFERENT GROUPS OF
PEOPLE FOR DIFFERENT PURPOSES,
IT COULD EVOLVE OVER TIME.
AND SO OUR POSITION ON THIS IS
JUST THAT I THINK THIS IS AN
AREA WHERE THERE'S A DATA GAP,
AND WE'RE ABLE TO CONTRIBUTE TO
IT BUT IT'S NOT -- WE AREN'T
TAKING A POSITION ON WHETHER
THAT IS A STANDARD THE COMMUNITY
IS -- WE'RE NOT DIRECTING THE
COMMUNITY TO USE IT.
WE'RE SAYING THIS IS WHAT IT
LOOKS LIKE IF WE APPLY IT TO THE
POPULATION DATA WE HAVE.
AND ALL OF THE ISSUES ABOUT, YOU
KNOW, SUBTLETIES IN TRYING TO
MEASURE INTELLECTUAL ABILITY,
NON-VERBAL STATUS, THOSE ARE
DIFFICULT EVEN IF YOU'RE MAKING
THOSE ASSESSMENTS IN A CLINICAL
SETTING AND AT A POPULATION
LEVEL OFTENTIMES THE THINGS
YOU'RE TRYING ESTIMATE YOU HAVE
TO DO FROM LESS THAN PERFECT
MEASUREMENTS, AND THAT'S
ACTUALLY A BIG PART OF OUR WORK
AND SO WE CAN APPRECIATE THE
COMMENTS ABOUT HOW CHALLENGING
THOSE ARE TO MEASURE.
>>THANK YOU.
JOE?
>>OKAY, ABOUT.
THANKS.
WELL, THANKS FOR A GREAT
PRESENTATION AND FOR YOUR REALLY
GREAT WORK AND OBVIOUSLY HARD
WORK.
I THINK YOU GUYS WERE ON BEFORE,
I MAY HAVE ASKED THE -- RAISED
THE SAME ISSUE, APOLOGIES FOR
BEING A BROKEN RECORD HERE.
I WANT TO FOCUS ON WHAT
POTENTIAL ASCERTAINMENT BIASES
EXIST IN THIS DATA.
I'M A CLINICIAN IN A RURAL
STATE.
TERTIARY CARE CENTER.
AND THERE'S A TREMENDOUS PUSH
FOR US TO HELP KIDS GET SERVICES
IN REMOTE AREAS THAT DON'T HAVE
SERVICES.
AND OFTEN THE TICKET ENDS UP
BEING A DIAGNOSIS OF AUTISM, YOU
KNOW.
THAT'S UNFORTUNATE.
SO I THINK THAT THAT'S A PROBLEM
IN ASCERTAINING SORT OF THROUGH
THE SCHOOLS, AND WITH -- I'M NOT
EXACTLY SURE WHAT QUALIFIED
PROFESSIONALS ARE, BUT I THINK
THERE'S SOME INHERENT ISSUES
THERE.
AND I WORRY THAT WHAT WE'RE
TRACKING IS A SORT OF ANOTHER
SOCIAL PHENOMENON AND NOT
NECESSARILY JUST, YOU KNOW, THE
ACTUAL PREVALENCE.
AND I KIND OF RECALL MAYBE THIS
IS BEFORE YOUR TIME, BUT SORT OF
LANDMARK ECA STUDIES IN THE
'80s OF PSYCHIATRIC
EPIDEMIOLOGY.
AND THERE WAS ONE SORT OF ROGUE
GROUP THAT INSTEAD OF USING THE
METHODS THAT HAD BEEN USED
THROUGHOUT THE ECA, THEY DID A
DOOR-TO-DOOR MORE CLASSIC
TRADITIONAL EPIDEMIOLOGIC STUDY.
THE RESULTS WERE QUITE
DIFFERENT.
SO, I DO WORRY ABOUT THAT, THAT
I APPRECIATE THE NEED TO, YOU
KNOW, CUT COSTS AND BE
EFFICIENT, BUT I THINK AT SOME
POINT WE REALLY DO NEED KIND OF
A TRADITIONAL DOOR-TO-DOOR
EPIDEMIOLOGIC STUDY TO HAVE SOME
KIND OF GROUND TRUTH HERE.
>>YEAH, I THINK THAT
ENCAPSULATES A REALLY
LONG-RUNNING -- ALMOST LIKE
PHILOSOPHICAL DEBATE IN THIS
SPACE, YOU KNOW, THE IDEA ARE WE
REALLY MEASURING TRUE AUTISM,
AND THE CHALLENGE I THINK IS TO
SAY TO WHAT STANDARD?
WHAT IS THE GROUND TRUTH, WHO
HAS DONE THIS?
IN ORDER TO IMPLEMENT SOMETHING
LIKE THAT YOU WOULD HAVE, YOU
KNOW, ANY STUDY IN WHICH YOU
NEED WILLING PARTICIPANTS THAT
THERE WOULD BE, YOU KNOW, ISSUES
OF CONSENT, ISSUES OF SCALE,
LIKE HOW MANY PEOPLE IN WHAT
COMMUNITIES, HOW WOULD YOU KNOW
WHAT YOU WOULD SEE, AND WOULD
THAT GENERALIZE, YOU KNOW, IF
YOU'RE GOING DOOR TO DOOR, IN
ONE COMMUNITY, WITH YOU GET THE
SAME RESULT IN ANOTHER STATE.
AND SO I THINK I GUESS I
WOULDN'T SAY THAT IT'S TOTALLY
IN THE NAME OF, YOU KNOW,
EFFICIENCY BUT THESE DATA DO
SHOW WHAT THE ACTUAL PRACTICES
ARE IN THESE COMMUNITIES, WHICH
IS ALSO IMPORTANT, IF THE IDEA
OF, YOU KNOW, LIKE YOU HAD
MENTIONED, IF IDENTIFYING A
CHILD HELPS GET THEM INTO
SERVICES, THAT I'M ASSUMING
EVERYONE IS ACTING IN GOOD FAITH
AND WOULD SAY THEY NEED THESE
SERVICES AND WOULD STAND TO
BENEFIT FROM THEM, IT'S -- THERE
IS PUBLIC HEALTH UTILITY IN
UNDERSTANDING THOSE PATTERNS OF
PRACTICES, THE IDEA OF WHAT IS
THE ACTUAL, YOU KNOW, TRUTH OF
AUTISM, YOU KNOW, THAT WOULD BE
SOMETHING THAT WOULD BE VERY
INTERESTING.
WE'D BE VERY INTERESTED IN
MEASURING IT BUT I THINK WE
WOULD LOOK TO OUR COLLEAGUES
WITH MORE CLINICAL EXPERTISE
ABOUT WHAT IS THAT OBJECTIVE
GROUND TRUTH.
>>THANKS VERY MUCH.
>>SEVERAL HANDS UP AND I'M
ACKNOWLEDGING WE HAVE 8 1/2
MINUTES.
LET'S GET THROUGH AS MANY AS WE
CAN BEFORE THE BREAK.
LINDSAY, YOU'RE NEXT.
>>CAN YOU SEE ME?
>>WE CAN HEAR YOU NOW.
>>OKAY, GREAT.
THANK YOU FOR A GREAT
PRESENTATION.
I AM GOING TO TOUCH ON A
QUESTION THAT HAS ALREADY BEEN
BROUGHT UP BEFORE, BUT I
WONDERED IF YOU CAN HELP US
PROVIDE A LITTLE BIT MORE
SPECIFICITY ON THIS.
SO, AS YOU PROBABLY KNOW, OUR
IACC MEETINGS ARE LIVE STREAMED
AND RECORDED AND ARE AVAILABLE
TO THE PUBLIC.
AND I ALWAYS FEEL LIKE EVEN
THOUGH THOSE ON THE COMMITTEE
HAVE A LOT OF FAMILIARITY WITH
AUTISM AND AUTISM RESEARCH AND
TERMINOLOGY, AND BEING ABLE TO
KIND OF HAVE AN UNDERSTANDING
HOW THESE THINGS WORK, EYE ALSO
RECOGNIZE A VAST MAJORITY OF THE
AUTISM COMMUNITY WHO MAY NOT BE
AS FAMILIAR WITH UNDERSTANDING
HOW WE COME UP WITH CRITERIA FOR
RESEARCH.
SO, MY QUESTION IS TO YOU LIKE
HYPOTHETICALLY, IF I WERE A
PERSON WHO WAS JUST A FAMILY
MEMBER OR SOMEONE NOT TOO
FAMILIAR WITH HOW AUTISM
RESEARCH AND CRITERIA WORK, IF
YOU CAN EXPLAIN OR SIMPLY IN
SIMPLE TERMS HOW ARE THE
SURVEILLANCE AREAS AND SPECIFIC
STATES HAVE BEEN HISTORICALLY
SELECTED FOR WHEN YOU DO
PREVALENCE RATES, AND ALSO IN
CAPACITY FOR THE LONG-TERM PLAN.
IS THERE A LONG-TERM PLAN IN
PLACE TO EXPAND THE BANDWIDTH
AND EXPAND THE NUMBER OF STATES
AND SITES WHERE YOU DO THESE
STUDIES, AND WHAT ARE THE
SPECIFIC CRITERIA FOR SELECTING
WHICH SITES YOU'RE GOING TO USE?
>>YEAH, IT'S A VERY GOOD
QUESTION.
AND THIS -- IF WE'RE, YOU KNOW,
TALKING ABOUT THE NUTS AND BOLTS
OF HOW THIS WORKS IT'S WORTH
POINTING OUT THIS ISN'T EVEN
RESEARCH, PUBLIC HEALTH
SURVEILLANCE IS A DIFFERENT KIND
OF ACTIVITY THAT HAS SPECIAL
PROVISIONS UNDER LIKE THE HEALTH
CODE FOR, YOU KNOW, WORKING WITH
SENSITIVE DATA.
AND THE PROCESS FOR SOMEONE TO
BE A SITE IS IT'S A COMPETITIVE
PROCESS, E C PUTS OUT FUNDING
ANNOUNCEMENTS THAT PUBLIC HEALTH
AUTHORITIES CAN APPLY TO IN OUR
CASE IT'S OFTEN PEOPLE AT EITHER
HEALTH DEPARTMENTS OR
UNIVERSITIES THAT ARE WORKING ON
BEHALF OF THE HEALTH DEPARTMENT
TO AUGMENT THEIR CAPACITY TO DO
THIS ACTIVITY.
AND IT'S COMPETITIVE.
THEY CREATE A PROPOSAL THAT
DESCRIBES WHAT THEIR GEOGRAPHIC
COVERAGE IS, WHY THEY THINK THEY
WOULD BE SUCCESSFUL IN DOING IT,
THEIR EXPERIENCE, CAPACITY,
RELATIONSHIPS THEY HAVE IN THE
COMMUNITY.
ESPECIALLY WITH PLACES THAT
SERVE CHILDREN WITH
DISABILITIES, AND THEY -- LIKE
THAT APPLICATION IS THEN JUDGED
BY A SET OF INDEPENDENT
REVIEWERS, SO IT'S NO ONE ON OUR
TEAM THAT REVIEWS AND SCORES THE
APPLICATIONS.
IT'S AN OBJECTIVE REVIEW PANEL
WITHIN CDC.
SO PEOPLE THAT KNOW A LOT ABOUT
PUBLIC HEALTH AND DOING THIS
KIND OF WORK BUT NOT DIRECTLY ON
OUR TEAM.
THEY SCORE THE APPLICATIONS, AND
THEN WE GENERALLY GO DOWN THE
LINE UNTIL WE RUN OUT OF
RESOURCES TO FUND THEM.
IN TERMS OF PLANS FOR EXPANSION,
THERE WAS AN INCREASE IN THE
PRESIDENT'S BUDGET SIGNED IN
JANUARY THAT IS AFFORDING ADDM
TO EXPAND AND ADD ADDITIONAL
SITES, SORT OF IN THE SAME
CAPACITY THAT WE HAVE THE
CURRENT ONES, AND SO OUR PLAN,
WE'VE BEEN SCURRYING SINCE WE
REALIZED WE HAD ADDITIONAL
RESOURCES TO MAKE THAT HAPPEN,
AND SO THE TEAM HAS BEEN
EFFICIENT, THERE'S LOTS OF
LAYERS WITHIN GOVERNMENT OF THAT
WORKING THROUGH TO WHERE IT GETS
OUT INTO THE WORLD.
BUT THE TEAM HERE HAS BEEN
INCREDIBLY ON TOP OF IT.
SO I THINK IN THE COMING DAYS
WE'LL HAVE SOMETHING TO SAY
ABOUT THE ADDITION OF SITES AS
WELL.
>>GREAT.
THANK YOU SO MUCH.
>>THANKS.
>>OKAY.
THANK YOU.
I THINK WE HAVE TIME FOR ONE,
MAYBE TWO QUESTIONS.
AMANDA, YOU'RE NEXT.
>>I'M GOING TO GO FAST.
THANK YOU.
I'M ALSO ECHOING ANOTHER REMARK.
I KNOW YOU DIDN'T CHOOSE THE
WORD "PROFOUND."
I HAVE A HISTORY OF WORKING WITH
PEOPLE WITH DEVELOPMENT
DISABILITY, THAT'S A LOADED
TERM.
IF THERE'S ANYTHING WE'VE
LEARNED ABOUT PEOPLE WITH
NEURODIVERSITY IT'S THAT JUDGING
IS USUALLY -- ITS CREATES
COGNITIVE SCHEMA, CAN BE
PROBLEMATIC.
I KNOW A YOUNG MAN IS NOT
VERBAL, CONSIDERED THE TERM LOW
FUNCTIONING UNTIL THEY FIGURED
OUT HE CAN READ AND HAS
EXTENSIVE KNOWLEDGE OF THE
POLITICAL SITUATION IN THE
UNITED STATES WHICH REALLY MAKES
HIM A GENIUS, IN MY BOOK.
SO I THINK I JUST THINK WE HAVE
TO BE SO GUARDED BECAUSE WHEN
YOU USE WORDS LIKE THAT IT PUTS
PEOPLE IN COMPARTMENTS THAT
INFLUENCE HOW PEOPLE TEACH AND
TREAT THEM.
AND IT'S A BIG PROBLEM.
THE OTHER THING IS BECAUSE I
WORK FOR OFFICE OF HEAD START, I
KNOW THE DATA CAN NEVER BE
TOTALLY UP TO DATE, WE'RE SEEING
CONCERNING THINGS FOR FAMILIES
ESPECIALLY WITH LOWER RESOURCES
IN TERMS OF STATES BACKING AWAY
AND DISTRICTS BACKING AWAY FROM
MULTI-DISCIPLINARY EVALUATION,
MORE KIDS GETTING DIAGNOSED WITH
SPEECH AND LANGUAGE WITHOUT A
COMPREHENSIVE LOOK AT HOW THEY
ARE DOING.
WE'VE HEARD OF DISTRICTS
ASSIGNING CHILDREN TO GAP TIME
BETWEEN PART C AND PART B, LIKE
A GAP YEAR BEFORE YOU GO COLLEGE
SO KIDS STILL ELIGIBLE UNDER IDA
ARE NOT GETTING SERVICES, NOT
FAMILIES WITH ACCESS TO LEGAL
REPRESENTATION, TEND TO BE LOW
INCOME FAMILIES.
WE KNOW OF ANOTHER STATE WHERE
THEY DON'T HAVE ENOUGH SPEECH
AND LANGUAGE THERAPISTS SO
CHILDREN ARE ONLY GETTING SPEECH
AND LANGUAGE AS 4-YEAR-OLDS, NOT
AS 3-YEAR-OLDS.
I WAS SURPRISED AND GLAD TO SEE
SOME OF THE DATA LOOKS LIKE SOME
OF THE EQUITY PROBLEMS MAY HAVE
DIMINISHED BUT I THINK THEY MAY
HAVE GOTTEN WORSE AGAIN DURING
THE PANDEMIC.
SO WE'RE GOING TO HAVE TO REALLY
CONSIDER THAT WHEN WE KNOW SO
MUCH ABOUT HOW MUCH EARLY
IDENTIFICATION AND EARLY
INTERVENTION MATTERS WITH
AUTISM.
SO, AGAIN, THANKS FOR YOUR WORK.
IT'S PROVOCATIVE.
THAT'S VALUABLE AND I APPRECIATE
THE CHANCE TO SPEAK.
>>THANK YOU FOR YOUR COMMENT.
>>THANK YOU.
JENNY, WE'LL GIVE YOU THE LAST
QUESTION/COMMENT FOR THE DAY.
>>THANK YOU FOR BEING HERE AND
FOR YOUR PRESENTATION.
I WILL BE BRIEF.
I COULDN'T HELP BUT NOTICE THAT
FIGURE THAT YOU PUT UP THAT
SHOWED THE PREVALENCE RATE, AND
BROKEN BY THE DIFFERENT RACIAL
GROUPS, THAT ASIAN AND PACIFIC
ISLANDER GROUP HAD SUCH WIDE
ERROR BARS, BARS THAT WERE
STEMMING FROM THOSE DOTS TO
SPEAK TO THE PUBLIC AND EXPLAIN.
COULD YOU TALK MORE ABOUT LIKE
WHAT THAT MEANS SO THAT THE REST
OF US CAN UNDERSTAND WHAT THOSE
ERROR BARS MEAN?
>>SURE.
YEAH, SO THOSE ARE 95%
CONFIDENCE INTERVALS,
STATISTICAL APPRECIATE,
PRACTICAL IS HOW PRECISE YOU
SHEENING -- THINK THAT ESTIMATE
IS.
BIG ERROR BARS MEAN YOU DON'T
HAVE ENOUGH DATA TO BE CONFIDENT
THAT THAT IS -- YOU'RE MEASURING
-- YOU KNOW, IT COULD BE
REASONABLY WITHIN THAT RANGE.
AND THE REASON FOR THAT IS JUST
BECAUSE LOOKING AT THE
DEMOGRAPHIC COMPOSITION OF THESE
COMMUNITIES AND COUNTRY AS A
WHOLE, SMALLER GROUPS HAVE, YOU
KNOW, FEWER PEOPLE WHICH MEANS
LESS PRECISE ESTIMATES UNLESS
THERE WAS DELIBERATE ATTEMPT TO,
YOU KNOW, OVERREPRESENT THOSE
GROUPS.
EVERY DATA POINT IN OUR REPORTS
AT LEAST NOW FOR THE LAST I
THINK THREE SURVEILLANCE CYCLES
WE DO APPLY LIKE A STANDARD FOR
STATISTICAL PRECISION, AND WE
JUST BORROWED ONE WIDELY USED BY
NATIONAL CENTER FOR HEALTH
STATISTICS.
EVEN THOUGH THOSE BARS ARE WIDE
IT'S STILL REASONABLE TO
INTERPRET IT AS A STABLE
ESTIMATE.
WHEN THAT ISN'T THE CASE, YOU'LL
SEE LIKE A LITTLE SUPPRESSED
SYMBOL, IF YOU LIKE IN SOME
TABLES LIKE WITHIN INDIVIDUAL
SITES.
SO IT'S JUST A FUNCTION OF LIKE
HOW MANY PEOPLE ARE IN THAT
GROUP AND THAT AFFECTS THE
PRECISION OF THE ESTIMATES.
>>THANK YOU.
APPRECIATE THE BREAKDOWN.
>>THANK YOU.
I WANT TO SAY THANK YOU SO MUCH
TO KARYL, MATTHEW, AND KELLY FOR
THE EXCELLENT PRESENTATION AND
GREAT DISCUSSION.
WE'LL TAKE A FIVE MINUTE BREAK,
COMING BACK AT 11:21 TO START
THE NEXT SESSION.
SEE YOU ALL SOON.
>>WELCOME BACK.
I'M GOING TO TURN IT OVER TO
SUSAN DANIELS, NATIONAL AUTISM
COORDINATOR, FOR THE UPDATE,
FOLLOWED BY IACC BUSINESS.
SUSAN?
>>THANK YOU.
ALL RIGHT.
SO, I HAVE THE NATIONAL AUTISM
COORDINATOR UPDATE, I'M GOING TO
BE SHARING HIGHLIGHTS FROM
AROUND THE GOVERNMENT AND AROUND
THE COMMUNITY.
SO FIRST I'M GOING TO SHARE A
FEW HIGHLIGHTS FROM THE WHITE
HOUSE AND AUTISM AWARENESS MONTH
UPDATES.
FIRST, FROM THE WHITE HOUSE,
DURING BLACK HISTORY MONTH WHICH
WAS IN FEBRUARY, THE WHITE HOUSE
RELEASED A FACT SHEET ON THE
BIDEN-HARRIS ADMINISTRATION WORK
TO SUPPORT BLACK DISABLED
AMERICANS, WE HAVE A LINK ON THE
SLIDE SO THAT FACT SHEET AND
THEY NOTED MANY INITIATIVES
ACROSS THE ENTIRE FEDERAL
GOVERNMENT WHERE THEY WERE
WORKING TO HELP BLACK AMERICANS
AND PEOPLE WITH DISABILITIES
THRIVE IN THEIR COMMUNITIES AT
WORK, AT HOME, AT SCHOOL.
AND THE FACT SHEET COVERS
EMPLOYMENT, FINANCIAL
EMPOWERMENT, ACCESS TO
DISABILITY BEN ITS, EDUCATION,
HOUSING, FAMILY SUPPORT, HEALTH
CARE.
YOU MIGHT WANT TO CHECK OUT THAT
FACT SHEET.
NEXT WE HAVE THE WHITE HOUSE,
PRESIDENT'S PROCLAMATION ON
WORLD AUTISM AWARENESS DAY,
2023, WHERE HE RENEWED
ADMINISTRATION'S COMMITMENT TO
EQUAL RIGHTS, INCLUSION, AND
SUPPORT FOR PEOPLE ON THE AUTISM
SPECTRUM.
HE TALKED ABOUT WHERE THE
ADMINISTRATION HAS MADE STRIDES
INCLUDING HOME AND
COMMUNITY-BASED SERVICES,
HOUSING, EMPLOYMENT, EDUCATION,
SAFETY AND LAW ENFORCEMENT,
HEALTH CARE, ALSO ON GLOBAL
HUMAN RIGHTS.
AND YOU CAN SEE THE PROCLAMATION
ON THE WHITE HOUSE WEB PAGE,
WEBSITE.
WE ALSO HAVE UPDATES ABOUT
AUTISM AWARENESS MONTH.
AT THE UNITED NATIONS OVER THE
WEEKEND U.N. SECRETARY GENERAL
GUTIERREZ ISSUED A STATEMENT TO
MARK THE DAY, INCLUSIVE
ENVIRONMENTS AROUND THE WORLD.
A SPECIAL EVENT SUNDAY WITH
GLOBAL VIRTUAL EVENT TEAM,
TRANSFORMATION TO NEUROINCLUSIVE
WORLD FOR ALL.
YOU MAY WANT TO SEE THE VIDEO
WHICH IS ON THE U.N. WEBSITE.
WE PROVIDED THE LINKS HERE.
I WOULD LIKE TO WELCOME AND
INVITE YOU TO JOIN US IN ABOUT A
WEEK, A WEEK-AND-A-HALF OR SO,
ON FRIDAY APRIL 14, FROM 2 TO
3:00 P.M. EASTERN, OUR OFFICE
AND THE NIMH ARE GOING TO BE
HOSTING AN AUTISM AWARENESS
MONTH SPECIAL EVENT WHICH WILL
FEATURE INTERVIEWS WITH FOUR
AUTISTIC ARTISTS, SHEILA
BENEDIS, RONALDO BYRD, DAVID
DOWNES AND JEREMY SICILE-KIRA,
YOU CAN GET A PREVIEW, IT'S FREE
AND OPEN TO THE PUBLIC,
AVAILABLE ON NIH VIDEOCAST.
VISIT THE WEBSITE AND REGISTER
FOR THAT EVENT.
ALSO I WANTED TO HIGHLIGHT
INDIAN HEALTH SERVICES, TWO
EVENTS FOR AUTISM AWARENESS
MONTH, AMERICAN INDIAN/ALASKA
PARENTS OF CHILDREN WITH AUTISM
PANEL TAKING PLACE ON APRIL 12,
1:00 P.M. EASTERN.
AND ALSO ON APRIL 27 THEY WILL
BE HOSTING THE IMPORTANCE OF
SCREENING FOR AUTISM SPECTRUM
DISORDER AND USE OF M-CHAT, WE
PROVIDED LINKS SO YOU CAN ATTEND
THOSE.
IN ADDITION, NATIONAL INSTITUTE
OF ENVIRONMENTAL HEALTH SCIENCES
AT THE NIH IS HOSTING ON APRIL
20 FROM 1 TO 2:00 P.M. EASTERN A
SPECIAL EVENT FOR WORLD AUTISM
AWARENESS MONTH, IDENTIFYING
EARLY BRAIN MARKERS IN INFANCY
IN AUTISM AND ASSOCIATED
DEVELOPMENTAL DISABILITIES.
AND IT WILL FEATURE DR. MARK
SHEH IN UNIVERSITY OF NORTH
CAROLINA, CHAPEL HILL, THESE
SLIDES WILL BE POSTED AFTER THE
MEETING.
IN ADDITION IF YOU WANT TO FIND
OUT MORE ABOUT DIFFERENT THINGS
HAPPENING AROUND THE COUNTRY AND
THE WORLD FOR AUTISM AWARENESS
AND ACCEPTANCE MONTH, PLEASE
CHECK OUT OUR WEB SITE AND WE'VE
COMPILED EVENTS AND WILL UPDATE
THROUGH THE MONTH.
WE HAVE A NEW NEWSLETTER THAT
WENT OUT YESTERDAY WHERE WE
HIGHLIGHT VARIOUS EVENTS AND
NEWS UPDATES FROM AROUND THE
COUNTRY AND AROUND THE WORLD.
SO WELCOME YOU TO SEE THAT.
IF YOU'D LIKE TO SUBSCRIBE I'VE
PROVIDED THE LINK TO SUBSCRIBE
TO THAT NEWSLETTER.
SO NEXT LET'S TALK ABOUT FEDERAL
ACTIVITIES.
I WILL GO THROUGH SOME OF THE
OTHER FEDERAL ADVISORY
COMMITTEES THAT WE HAVE IN THE
GOVERNMENT THAT OVERLAP A LITTLE
BIT WITH OUR SUBJECT MATTER OF
DISABILITY IN AUTISM.
FIRST THE INTERAGENCY COMMITTEE
ON DISABILITY RESEARCH.
THIS COMMITTEE HELD A LUNCH AND
LEARN WEBINAR ON COVID-19 DATA
ON INDIVIDUALS WITH INTELLECTUAL
DEVELOPMENTAL DISABILITIES
RECENTLY.
THIS FEATURED PEOPLE FROM HHS,
SO YOU MAY WANT TO CHECK THAT
OUT.
THERE'S ALSO A REPORT THEY
ISSUED IN 2021, AND WE PROVIDED
THE LINK TO THE REPORT HERE ON
THE SLIDE TOO.
WITH THE NATIONAL COUNCIL ON
DISABILITY, A FRAM AGENCY THAT
WORKS ON DISABILITY-RELATED
ISSUES, THEY HELD RECENT
QUARTERLY BUSINESS MEETING ON
FEBRUARY 16, AND ISSUED A NOTICE
OF FUNDING OPPORTUNITY THAT
CLOSED ON MARCH 22 CALLED THE
ABSENCE OF PEOPLE WITH
DISABILITIES IN CLINICAL TRIALS,
AND I THOUGHT THAT MEMBERS OF
THE COMMITTEE MIGHT WANT TO KNOW
THAT WAS OUT.
AND THE AWARDEE THAT GETS THIS
GRANT WILL PREPARE A FINAL
REPORT TO PROVIDE
RECOMMENDATIONS AND PROMISING
PRACTICES TO INCREASE INCLUSION
OF PEOPLE WITH DISABILITIES IN
CLINICAL TRIALS.
IN ADDITION, MARCH 23, NATIONAL
COUNCIL ON DISABILITY ISSUED AN
UPDATE OF HEALTH EQUITIES
FRAMEWORK.
SO THAT INFORMATION IS ALSO
PROVIDED HERE.
AND WE HEARD THAT THE NCD IN
COLLABORATION WITH NATIONAL
INDIAN COUNCIL ON AGING RECENTLY
RELEASED A TOOL KIT CALLED
UNDERSTANDING DISABILITIES IN
AMERICAN INDIAN AND ALASKA
NATIVE COMMUNITIES, SHARING
RESOURCES AND RECOMMENDATIONS ON
DISABILITY SERVICES AND
PROTECTIONS FOR TRIBAL NATIONS.
AND THAT IS AVAILABLE ON THE
IACC WEBSITE AS WELL.
THE FEDERAL PARTNERS IN
TRANSITION IS A FEDERAL WORKING
GROUP THAT WORKS ON YOUTH WITH
DISABILITIES, AND THEY JUST HELD
THEIR GENERAL COMMITTEE MEETING
IN MARCH, MARCH 16, THEY ARE
CONTINUING TO WORK ON THEIR NEW
FEDERAL YOUTH TRANSITION PLAN,
SO WE WILL KEEP YOU UPDATED ON
THE PROGRESS OF THAT PLAN.
SAMHSA'S INTERDEPARTMENTAL
SERIOUS MENTAL ILLNESS
COORDINATING COMMITTEE WHICH
SOMETIMES OVERLAP WITH AUTISM,
AS CO-OCCURRING CONDITION, THEIR
RECENT ACTIVITIES INCLUDE
MEETING THAT HAPPENED ON MARCH
14, AND THEY HAD A PRESENTATION
FROM BRANDON STAGLAND, PRESIDENT
OF ONE MIND, ONE MIND
INITIATIVE, SOCIAL INNOVATION
FOR BETTER MENTAL HEALTH.
AND THE FULL AGENDA AND LINK ARE
HERE ON THIS SLIDE.
I WOULD ALSO LIKE TO DRAW YOUR
ATTENTION TO AN UPCOMING
WORKSHOP OF THE NIH, NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT, ABLEISM IN
MEDICINE AND CLINICAL RESEARCH
WORKSHOP.
THIS WILL BE TAKING PLACE LATER
THIS MONTH, APRIL 27-28, AND
WILL BE A TWO-DAY MEETING ON
ABLEISM IN CLINICAL CARE AND
BIOMEDICAL AND BEHAVIORAL
RESEARCH.
AND YOU'RE WELCOME TO REGISTER
FOR THAT EVENT, AND I'M SURE
THAT SEVERAL OF YOU WILL WANT TO
ATTEND THAT.
IT'S FREE, AND OPEN TO THE
PUBLIC.
AND SOME ADDITIONAL COMMITTEES
THAT I'VE LISTED HERE DIDN'T
HAVE NEW UPDATES BUT WANTED YOU
TO KNOW WE DID CHECK.
RAISE FAMILY CARE GIVING
ADVISORY COMMITTEE, DISABILITY
ADVISORY COMMITTEE, PRESIDENT'S
COMMITTEE AND NATIONAL ADVISORY
COMMITTEE DIDN'T HAVE UPDATES AT
THE TIME WE PUT THESE SLIDES
TOGETHER, BUT I THINK THE DAC
ANNOUNCED A NEW MEETING, WE'LL
PROVIDE THAT UPDATE FOR YOU,
PROBABLY WILL UPDATE THE SLIDES
BEFORE WE POST THEM.
AND IN ADDITION I JUST HAVE A
FEW NON-GOVERNMENTAL ACTIVITIES
I WANTED TO POINT OUT FOR YOU.
ONE, THAT ON MARCH 30, 2023,
AUTISM SCIENCE FOUNDATION HELD
ITS ANNUAL DAY OF LEARNING THAT
FEATURED TALKS BY RESEARCHERS
AND CLINICIANS ABOUT TOPICS IN
AUTISM RESEARCH, AND THE EVENT
VIDEOS AND INFORMATION ABOUT THE
EVENT CAN BE FOUND ON THEIR
EVENT PAGE.
IN ADDITION, THE KENNEDY KRIEGER
RESEARCH INSTITUTE HELD A
CONFERENCE CALLED NEURODIVERSITY
IN THE WORKPLACE, AND THEY
BROUGHT TOGETHER EMPLOYERS,
STAKEHOLDERS, POLICYMAKERS
COMMITTED TO IMPROVING
EMPLOYMENT OUTCOMES FOR THE
NEURODIVERSE WORKFORCE, AND MORE
INFORMATION CAN BE FOUND ON
THEIR WEBSITE.
ALSO, THE DREXEL RESEARCH
INSTITUTE ISSUED A NEW REPORT,
NATIONAL AUTISM INDICATOR'S
REPORT, EXPLORING INDIVIDUALS'
USE OF MEDICAID ACROSS THE
LIFESPAN, INTRODUCTION TO
MEDICAID AND AUTISM, AND IT IS
THE FIRST REPORT IN THE AUTISM
INSTITUTE POLICY INSIGHT SERIES.
AND YOU CAN FIND THAT
INFORMATION ON THEIR WEBSITE,
AND THEY HAVE A VERY NICE
EDITION TO READ, LIKE AN
EASY-READ EDITION WITH A LOT OF
GRAPHICS.
I THINK THIS IS MY FINAL UPDATE,
THE INTERNATIONAL SOCIETY FOR
AUTISM RESEARCH HOLDING ITS
ANNUAL MEETING IN STOCKHOLM,
SWEDEN, FROM MAY 3-6, THEY WILL
BE SHARING NEW SCIENTIFIC
PROGRESS AND FINDINGS FROM
SCIENTISTS ACROSS THE WORLD, AND
SO INFORMATION FOR THAT AND THE
REG -- REGISTRATION IS ON THEIR
WEB PAGE, HOPE MANY OF YOU WILL
BE ABLE TO TEND -- ATTEND THAT.
I CONCLUSION THE UPDATE.
ARE THERE ANY QUESTIONS THAT
ANYONE HAS FOR ME?
ALL RIGHT.
I'M NOT SEEING ANY.
AND SO I WILL TRANSITION US THEN
TO COMMITTEE BUSINESS.
SO, WE HAVE SOME ITEMS FOR
COMMITTEE BUSINESS TO DISCUSS
TODAY WITH THE IACC INCLUDING
IACC STRATEGIC PLAN, I'LL UPDATE
YOU ON THE STATUS OF THAT.
HEALTH OUTCOMES WORKING GROUP
REPORT THAT I MENTIONED LAST
TIME, AND SOME UPDATES ABOUT THE
IACC SUMMARY OF ADVANCES.
SO, THE 2021-2023 IACC STRATEGIC
PLAN THAT THIS COMMITTEE
APPROVED IN JANUARY IS IN THE
PROCESS OF BEING PUBLISHED,
EXPECTED TO BE PUBLISHED IN MAY.
SO, THE COMMITTEE VOTED TO
APPROVE IT, AND WE ARE WORKING
ON THAT PUBLICATION, AND AFTER
IT IS PUBLISHED WE WILL ALSO
TRANSMITTED TO CONGRESS AND THE
PRESIDENT AS REQUIRED BY THE
AUTISM CARES ACT OF 2019.
WE'VE PREPARED AN EASY-TO-READ
VERSION RELEASED AT THE SAME
TIME.
FOR THE HEALTH OUTCOMES WORKING
GROUP REPORT, THIS IS THE REPORT
THAT THE COMMITTEE WAS WORKING
ON IN THE LAST ITERATION ON
CO-OCCURRING CONDITIONS, AND I
ASKED THE COMMITTEE LAST TIME IF
THE COMMITTEE WAS INTERESTED IN
CONTINUING AND FINISHING THIS
REPORT, AND THE COMMITTEE DID
APPROVE WORK ON THIS REPORT.
AND SO OUR OFFICE WILL BE
PICKING UP THIS REPORT AS SOON
AS THE STRATEGIC PLAN IS
PUBLISHED AND WORKING ON THIS
OVER THE SUMMER TO GET A DRAFT
READY FOR THIS COMMITTEE TO
REVIEW.
AND WE WILL BE REACHING OUT TO
PEOPLE WHO ARE INVOLVED EARLIER
IN THE REPORT, AND DOING SOME
REVISIONS TO GET IT UP TO DATE.
SO YOU CAN EXPECT TO SEE SOME
E-MAILS ABOUT THIS BETWEEN NOW
AND THE NEXT MEETING OF THE IACC
IN OCTOBER.
AND JULIE TAYLOR HAS GRACIOUSLY
OFFERED TO CONTINUE CHAIRING THE
WORKING GROUP, WE'LL RECONVENE
MEMBERS TO TAKE A LOOK AT THE
REPORT AND HELP US WITH THE
UPDATE AS WELL.
WITH THE IACC SUMMARY OF
ADVANCES I'M PLEASED TO ANNOUNCE
2021 IACC SUMMARY OF ADVANCES
WAS RELEASED YESTERDAY, AND SO
MANY OF YOU PROBABLY SAW THAT IN
THE OARC NEWSLETTER, AND ON
TWITTER.
SO THIS IS A REPORT THAT WAS
REQUIRED BY THE AUTISM CARES ACT
OF 2019.
AND THIS COMMITTEE SELECTED 20
OF THE MOST SIGNIFICANT ADVANCES
IN ASD BIOMEDICAL AND SERVICES
RESEARCH OVER THE COURSE OF THE
WORK OF THIS COMMITTEE, THE
ARTICLES COVER ALL SEVEN AREAS
OF THE STRATEGIC PLAN.
SO, THE FULL REPORT CAN BE FOUND
AT THE LINK PROVIDED HERE.
WE ALSO HAVE AN EASY-READ
VERSION CREATED FOR THIS REPORT.
THANK YOU FOR YOUR WORK ON THIS.
WE'RE WORKING TOWARD GETTING
CAUGHT UP ON THE SUMMARY OF
ADVANCES, SO HOPEFULLY WE WILL
SOON BE IN THE CURRENT YEAR
ONLY.
TO GIVE A STATUS UPDATE ON THE
2022 IACC SUMMARY OF ADVANCES,
WE'VE ALREADY HAD YOU NOMINATE
ARTICLES, DISCUSS THE
NOMINATIONS, AND VOTE.
AND SO NOW WE'RE AT THE STAGE OF
OUR OFFICE WORKING WITH OUR
CONTRACTOR TO PREPARE SUMMARIES
OF EACH ARTICLE, AND PREPARE THE
FULL DRAFT PUBLICATION.
AND SO ONCE THAT IS PREPARED WE
WILL GIVE THE COMMITTEE AN
OPPORTUNITY TO QUICKLY PREVIEW
IT, AND COMMENT ON THE DRAFT,
AND THEN WE WILL PREPARE IT FOR
A FINAL PUBLICATION OVER THE
SUMMER AND PRESENT IT BACK TO
YOU IN OCTOBER.
FOR THE 2023 IACC SUMMARY OF
ADVANCES, WE HAVE STARTED THE
PROCESS OF NOMINATING ARTICLES
FOR THIS YEAR FOR 2023.
AND TODAY WE'RE GOING TO DISCUSS
NOMINATIONS THAT HAVE COME IN SO
FAR.
AND THE REST OF THE PROCESS WILL
ENSUE AFTER THAT.
SO, ARE THERE ANY QUESTIONS UP
TO THIS POINT??
NOT HEARING OR SEEING ANY SO
I'LL MOVE US TO THE DISCUSSION
OF THE SUMMARY OF ADVANCES.
SOY THE GOAL OF TODAY'S
DISCUSSION WILL BE TO REVIEW THE
LIST OF 20 NOMINATED ARTICLES
THAT IF ACCEPTED WILL EVENTUALLY
APPEAR ON THE BALLOT.
AND SELECTED ARTICLES SHOULD
REPRESENT SIGNIFICANT ADVANCES
OR PROGRESS IN UNDERSTANDING
AUTISM ACROSS THE SEVEN AREAS OF
THE STRATEGIC PLAN.
AND THE SEVEN AREAS WE EXPECT TO
COVER MOST LIKELY BY THE END OF
THE YEAR AS WE TAKE IN ALL OF
THE DIFFERENT NOMINATIONS FROM
THE COMMITTEE.
SO, DURING THIS DISCUSSION,
YOU'RE WELCOME TO SHARE ANY
ARTICLES THAT YOU FIND
PARTICULARLY NOTEWORTHY, IF YOU
WANT TO SAY SOMETHING ABOUT
THEM, OR IF YOU HAVE ANY
CONCERNS ABOUT ANYTHING ON THE
LIST AND WOULD LIKE TO PROPOSE
REMOVAL FROM THE LIST.
KEEP IN MIND WE DID NOT WANT TO
INCLUDE STUDIES TOO PRELIMINARY
OR HAVE A VERY SMALL SAMPLE
SIZE, REVIEWS, COMMENTARIES OR
WORK GROUP RECOMMENDATIONS.
THIS PUBLICATION IS MEANT FOR
ORIGINAL RESEARCH FINDINGS IN
BOTH SERVICES RESEARCH AND
BIOMEDICAL RESEARCH.
SO I WILL SHARE WITH UP THE 20
NOMINATIONS THAT WE RECEIVED TO
DATE.
SO FOR QUESTION 1, WE HAVE FOUR
NOMINATIONS I BELIEVE.
YES, JUST FOUR.
SO, WE HAD DIFFERENTIAL
PERFORMANCE OF SOCIAL
COMMUNICATION QUESTIONNAIRE
ITEMS IN AFRICAN AMERICAN, BLACK
VERSUS WHITE CHILDREN.
PREDICTIVE VALUE OF EARLY AUTISM
DETECTION MODELS BASED ON
ELECTRONIC HEALTH RECORD DATA,
COLLECTED BEFORE THE AGE OF 1
YEAR.
EXAMINATION OF THE IMPACT OF THE
GET SET EARLY PROGRAM ON
EQUITABLE ACCESS TO CARE WITHIN
THE SCREEN-EVALUATE-TREAT CHAIN
IN TODDLERS WITH AUTISM SPECTRUM
DISORDER.
AND LEVEL OF ATTENTION TO
MOTHERESE SPEECH AS AN EARLY
MARKER OF AUTISM SPECTRUM
DISORDER.
SO DOES ANYONE HAVE COMMENTS
ABOUT ANY OF THESE NOMINATIONS
THAT CAME IN?
AND FOR ANYONE WHO IS WATCHING
ONLINE WE HAVE A LISTING ON OUR
WEBSITE ON THE MEETING PAGE OF
ALL OF THESE NOMINATIONS AS WELL
AND FOR COMMITTEE MEMBERS TOO
THERE'S A PACKET.
THE PACKET SHOWS WHO NOMINATED
ARTICLES AS WELL.
SO ANY COMMENTS HERE?
I'M NOT SEEING ANY COMMENTS.
I'LL MOVE TO QUESTION 2.
WE HAD ONLY TWO NOMINATIONS
HERE.
PROFILE OF AUTISM
CHARACTERISTICS IN 13 SYNDROMES,
AND SEX DIFFERENCES IN SOCIAL
AND EMOTIONAL INSIGHT IN YOUTH
WITH AND WITHOUT AUTISM.
IS THERE ANY DISCUSSION OF THESE
ITEMS?
SUPPORT OR CONCERNS?
AND YOU DO HAVE A JUSTIFICATION
THAT WAS PROVIDED BY THE
INDIVIDUAL OR AGENCY THAT WAS
NOMINATING THE ARTICLE.
OH, IVANOVA SMITH, DO YOU HAVE A
COMMENT?
>>I JUST THINK IT'S REALLY -- I
WANT TO SAY I SUPPORT -- I THINK
IT'S IMPORTANT THAT THERE'S MORE
RESEARCH ON SEXUALITY OF
AUTISTIC PEOPLE, AND SUPPORTING
PEOPLE, AUTISTIC PEOPLE,
UNDERSTANDING THEIR OWN SEX AND
THINGS LIKE THAT BECAUSE IT'S
VERY HARD, AUTISTIC PEOPLE
STRUGGLE WITH THAT.
I THINK THAT'S REALLY IMPORTANT
TO LOOK AT THAT.
SO THANK YOU.
>>THANK YOU.
YES, AND I THINK THIS ARTICLE
TALKS ABOUT THE DIFFERENCES IN
HOW PEOPLE OF DIFFERENT SEXES,
SO MALES AND FEMALES, INTERACT
SOCIALLY AND HOW MUCH EMOTIONAL
INSIGHT THEY HAVE.
YES, I APPRECIATE THAT COMMENT.
THANK YOU, IVANOVA.
ANYONE ELSE?
OKAY.
I WILL MOVE TO QUESTION 3.
WE DIDN'T HAVE ANY NOMINATIONS
FOR QUESTION 3 THIS TIME AROUND
BUT STAY TUNED FOR OCTOBER.
I'M SURE WE'LL HAVE SOME.
>>SUSAN, THERE'S A HAND UP.
>>DINA, WOULD YOU LIKE TO
PROVIDE A COMMENT?
>>SORRY, I COULDN'T GET TO MY
BUTTON FAST ENOUGH.
THE SAME ARTICLE THAT IVANOVA IS
COMMENTING ON, ONE OF THE
RELATIVE STRENGTHS THEY ARE
COMPARING AUTISTIC GIRLS TO
NON-AUTISTIC GIRLS WHICH IS SUCH
AN IMPROVEMENT, SO MUCH OF OUR
RESEARCH IS COMPROMISED BY THE
CONTINUED COMPARISON OF AUTISTIC
GIRLS TO BOYS.
YOU KNOW, SO I JUST WANTED TO
CHAMPION THAT ASPECT OF THE
STUDY.
>>THANK YOU, DINA.
THAT IS TRUE.
IT WAS A STRENGTH OF THAT STUDY.
ANY OTHER COMMENTS ON THIS?
FOR SOME REASON ON MY SCREEN I'M
NOT SEEING FACES, I SEE AT THE
BOTTOM IF SOMEBODY HAS A HAND
RAISED.
SORRY IF I'M NOT ABLE TO SEE
THAT.
>>I CAN HELP YOU, SUSAN.
I'LL LOOK FOR HANDS.
>>THANK YOU.
THAT WOULD BE GREAT, SHELLI.
QUESTION 4, INTERVENTIONS.
SO WE HAVE ONE NOMINATION.
THE EARLIER THE BETTER, RCT OF
TREATMENT TIMING EFFECTS FOR
TODDLERS ON THE AUTISM SPECTRUM.
ANY COMMENTS HERE?
>>NONE SO FAR.
>>OKAY.
SO I WILL MOVE TO QUESTION 5.
WE HAVE JUST THE THREE.
WE HAVE THREE FOR QUESTION 5.
PREPARING LAW ENFORCEMENT
OFFICERS TO ENGAGE SUCCESSFULLY
WITH INDIVIDUALS WITH AUTISM
SPECTRUM DISORDER, EVALUATION OF
PERFORMANCE-BASED APPROACH.
WE ALSO HAVE BARRIERS TO SERVICE
AND UNMET NEEDS AMONG AUTISTIC
ADOLESCENTS AND YOUNG ADULTS.
AND RACIAL AND ETHNIC
DISPARITIES IN GEOGRAPHIC ACCESS
TO AUTISM RESOURCES ACROSS THE
U.S.
SO ARE THERE ANY COMMENTS ON
THOSE?
>>HI.
THIS IS ALLISON FROM SOCIAL
SECURITY.
I WANT TO MENTION I HAD PUT
FORWARD THE ARTICLE, AND IT HAS
A COMPARATIVELY SMALL -- THEY
DID A PILOT BEFORE DOING IT, THE
MAIN STUDY, BUT IT WAS SUCH AN
IMPORTANT AREA, WHICH HAS VERY
MINIMAL RESEARCH BEHIND IT, I
THOUGHT IT WAS IMPORTANT TO
INCLUDE IT.
SO, THAT IS WHY I DID PUT IN
SOMETHING WHICH DID HAVE A
SMALLER SAMPLE SIZE THAN I WOULD
NORMALLY GO FOR.
I WANT PEOPLE TO HAVE THAT IN
MIND, KEEP THAT IN MIND.
>>THANKS SO MUCH FOR THE
ADDITIONAL INFORMATION, ALLISON.
>>THERE'S A HAND UP.
>>MARIA?
>>OH, HELLO.
THANK YOU SO MUCH.
I JUST WANTED TO, YOU KNOW,
CONCUR AND SAY THANK YOU SO MUCH
FOR THIS SUBMISSION.
I'M FORWARDING MANY OF THE
SLIDES AND DISCUSSION TO SOME OF
OUR TEAMS, OUR TECHNICAL
ASSISTANCE, PROVIDERS, AS I'M
GOING THROUGH THIS BECAUSE
THROUGH OUR STEPPING UP
INITIATIVE WHERE WE'RE LOOKING
AT COUNTIES AND COUNTY
COLLABORATIVES BETWEEN EITHER
PUBLIC SAFETY, LAW ENFORCEMENT
AND JUSTICE PARTNERS AND
PARTNERSHIP WITH OTHER SERVICE
PROVIDERS AND COMMUNITY
PARTNERSHIPS, TRYING TO -- WE'RE
TRYING TO LOOK AT, YOU KNOW, NOT
ONLY THE IMPACT AND
EFFECTIVENESS OF MODELS BUT ALSO
TALKING ABOUT RACIAL AND ETHNIC
DISPARITIES, KIND OF DOING A
CROSSWALK WITH, YOU KNOW, WHO IS
COMING INTO THE JAIL AND WHY,
AND SO I WAS TAKING NOTES
THROUGH THE CDC PRESENTATION AND
SOME NUMBERS THERE, AND MOVING
THAT ALONG TO SEE IF WE CAN
MAYBE START A DIALOGUE, CREATE A
BRIEF AROUND THAT.
AND SO THIS IS REALLY WONDERFUL
TO SEE THESE ARTICLES HERE, SO
THAT WE CAN TALK MORE ABOUT
CO-OCCURRING DISORDER AND SORT
OF CROSSWALK THAT WITH THAT
INTERACTIONS, WITH LAW
ENFORCEMENT, AND JUST GET AT
SOME OF THE REASONS BEHIND THAT
AND SOME UNDERLYING SORT OF
ENVIRONMENTAL FACTORS AND, YOU
KNOW, SOCIAL DETERMINANTS OF
HEALTH AND THINKING THROUGH LIKE
WHY IS THAT AND WHAT CAN WE DO
TO IMPACT CHANGE.
SO I'M REALLY HAPPY TO SEE
THESE.
THANK YOU.
>>EXCELLENT.
THANK YOU SO MUCH, MARIA.
>>AND WE HAVE SCOTT WITH HIS
HAND UP.
>>THANK YOU.
I DIDN'T NOMINATE THESE
ARTICLES.
I THINK IT'S GREAT ESPECIALLY
WITH RESEARCH ARTICLES LOOKING
AT RACE/ETHNICITY, GEOGRAPHY,
GENDER IDENTITY, SEXUAL
ORIENTATIONS, LIKE THESE
DIVERSITY ASPECTS.
I THINK IT'S REALLY HELPFUL TO
SEE THIS MORE AND MORE IN THE
RESEARCH LITERATURE AS WE GO
THROUGH TIME BECAUSE I THINK
IT'S BEEN SO MUCH LEFT OUT OVER
THE YEARS, AND I THINK THAT
WE'RE GETTING BETTER COVERAGE
NOW SO THAT'S GREAT.
I'M GLAD FOLKS ARE NOMINATING
THAT.
I'LL MAKE SURE TO INCLUDE
SIMILAR THINGS WHEN I MAKE
NOMINATIONS LATER ON.
I HADN'T MADE A NOMINATION FOR
AN ARTICLE YET.
>>WONDERFUL.
THANK YOU, SCOTT.
>>AND YETTA?
>>THANK YOU.
I APPRECIATE THOUGHTFULNESS
TAKEN TO BASICALLY PUT THESE
ARTICLES FORWARD.
I THINK THAT AS WE TALK ABOUT
LAW ENFORCEMENT AND OTHER
GROUPS, I WOULD SAY TO THE WHOLE
IACC MEMBERSHIP AND MYSELF
INCLUDED WE NEED TO BE THINKING
BROADLY ABOUT GROUPS INTERFACING
WITH THE COMMUNITY, AND REALLY
THINK ABOUT PUTTING FORTH MORE
ARTICLES SUCH AS THIS, SO I KNOW
ALLISON SAID IT'S A SMALL SAMPLE
BUT THIS IS SOMETHING THAT'S
COME UP IN SOME WORK I'M DOING
NATIONALLY, AND THEN IN TERMS OF
THINKING ABOUT LIKE BARRIERS TO
SERVICE AND UNMET NEED, LIKE
THERE'S BEEN SO MUCH FOCUS ON
SCHOOL AGE BUT AS MY SON IS
GETTING OLDER, HE'S NOW 19,
THINKING ABOUT WHAT DO SERVICES
LOOK LIKE, AS MY SON AGES AND
BECOMES AN ADULT IS IMPORTANT.
AND THEN ALSO TOO THIS IDEA OF,
YOU KNOW, DISPARITY, DEPENDING
WHERE PEOPLE LIVE, THIS IS
ANOTHER THING THAT IS COMING UP.
SO I THINK THESE THREE ARTICLES
ARE SPOT ON, AND I HOPE THAT,
YOU KNOW, AS A GROUP ONCE WE DIG
DEEPER THAT THESE WILL
DEFINITELY BE INCLUDED IN THE
LARGE SUMMARY.
YEAH, SO THANK YOU.
>>THANK YOU SO MUCH, YETTA.
ANY OTHER COMMENTS ON QUESTION
5?
>>NO OTHER HANDS, SUSAN.
>>THANK YOU SO MUCH.
WE'LL MOVE TO QUESTION 6.
I WAS TRYING TO REMEMBER WHICH
ONES HAD MULTIPLE.
WE HAVE FOUR ARTICLES FOR
QUESTION 6 INCLUDING PREDICTORS
OF SLEEP QUALITY FOR AUTISTIC
PEOPLE ACROSS ADULTHOOD, GIRLS
WITH SOCIAL AND/OR ATTENTION
DEFICIT REEXAMINED IN YOUNG
ADULTHOOD, DAILY LIFE
FUNCTIONING, SOCIAL SITUATION.
AND LONGITUDINAL STUDY ON
COGNITIVE AGING IN AUTISM.
AND FINALLY, PSYCHOLOGICAL,
BEHAVIORAL, AND BIOLOGICAL
FACTORS ASSOCIATED WITH
GASTROINTESTINAL SYMPTOMS IN
AUTISTIC ADULTS AND ADULTS WITH
AUTISTIC TRAITS.
SO ANY COMMENTS HERE FOR THESE
FOUR ARTICLES?
DINA?
>>I WAS GOING THROUGH THE SLEEP
STUDY ARTICLE.
IT DOES MAKE MENTION OF USE OF
SOCIAL SERVICE SYSTEMS, AS A
FACTOR IN SLEEP QUALITY.
BUT I CANNOT FIND WHAT THAT
FACTOR IS.
IS IT THAT HAVING MORE
PREDICTABILITY DUE TO SOCIAL
SERVICES REDUCE SLEEP
DISTURBANCES?
I COULDN'T SEEM TO FIND THAT IN
THE STUDY.
AND GIVEN THE DIFFICULTIES WE'RE
HAVING IN GETTING LATE LIFE
SERVICES FOR PEOPLE WHO WEREN'T
DIAGNOSED BEFORE 21, I THINK
THAT'S LIKE REALLY SIGNIFICANT
IN TERMS OF LOOKING AT AT SERVE
DELIVERY.
JUST A QUESTION, I DON'T KNOW IF
SOMEONE DID A BETTER READING AND
FOUND THE TRUTH, THE STORY TO
THAT?
BUT YEAH.
>>I DON'T KNOW IF ANYONE HAS
THAT ANSWER.
>>I'LL RE-READ IT.
>>YEAH.
I GUESS WE CAN ALL IMAGINE
MULTIPLE REASONS WHY SOMEONE
THAT ISN'T GETTING GOOD SERVICES
MIGHT HAVE TROUBLE WITH SLEEP.
BUT, YEAH, I DON'T SEE ANY HANDS
RAISED FOR THAT.
>>OKAY.
THANK YOU.
>>THANK YOU SO MUCH.
ANY OTHER COMMENTS?
>>NO HANDS, SUSAN.
>>ALL RIGHT.
WE'LL MOVE ON TO QUESTION 7.
THERE ARE TWO PAGES OF QUESTION
7.
PREVALENCE AND TREATMENT MUCH
MENTAL, BEHAVIORAL,
DEVELOPMENTAL DISORDERS IN
CHILDREN, WE HAVE ADOLESCENTS
WITH DIAGNOSTIC PATTERNS
CO-OCCURRING CONDITIONS AND
TRANSITION PLANNING.
WE HAVE PREVALENCE AND
CHARACTERISTICS OF AUTISM
SPECTRUM DISORDER AMONG CHILDREN
AGED 8 YEARS, AUTISM AND
DEVELOPMENTAL DISABILITIES
MONITORING NETWORK, 11 SITES,
WHICH WE JUST HEARD ABOUT.
AND WE HAVE -- OOPS.
EARLY IDENTIFICATION OF AUTISM
SPECTRUM DISORDER AMONG CHILDREN
AGE THE 4 YEARS, 11 SITES IN THE
UNITED STATES.
WHICH ALSO WAS DISCUSSED TODAY.
STATEWIDE COUNTY LEVEL AUTISM
SPECTRUM DISORDER ESTIMATES,
SEVEN U.S. STATES.
AND PREVALENCE AND DISPARITIES
IN THE DETECTION OF AUTISM
WITHOUT INTELLECTUAL DISABILITY.
SO THOSE ARE ALL OUR
NOMINATIONS.
DO WE HAVE ANY COMMENTS FOR
ANYONE THAT WAS A NOMINATOR HERE
WOULD LIKE TO SAY ANYTHING IN
SUPPORT OF THESE ARTICLES OR
DOES ANYONE HAVE CONCERNS?
>>KARYL HAS HER HAND UP.
>>GO AHEAD, KARYL.
>>HI.
SO, OBVIOUSLY I'M BIASED FROM
OUR PERSPECTIVE OF THE WORK WE
DO, BUT SO TWO OF THE PAPERS,
MAENNER AND THE FIRST SHAW PAPER
ARE THE TWO THAT WERE DESCRIBED
IN DETAIL TODAY.
YOU KNOW, WE BELIEVE THERE'S
JUST SUCH TREMENDOUS VALUE IN
UNDERSTANDING PREVALENCE, CHANGE
PREVALENCE, CHANGE IN
DISPARITIES, AND ALSO VERY
IMPORTANTLY EARLY IDENTIFICATION
AS WELL AS LEARNING HOW THE
PANDEMIC IMPACTED IDENTIFICATION
OF 4-YEAR-OLDS.
CERTAINLY WE SEE THOSE AS
IMPORTANT PAPERS, BUT THE OTHER
TWO I ALSO WANTED TO HIGHLIGHT
AS BRINGING VALUE, SO THE SECOND
SHAW UP THERE RIGHT NOW, KELLY
DID TALK ABOUT THAT A LITTLE
BIT.
I'VE SEEN THIS AS A BIT OF A
WATERSHED PAPER BECAUSE WE'RE
TAKING THIS IN-DEPTH ADDM DATA,
USING A DIFFERENT METHODOLOGY,
AND VALIDATING THE FACT THAT WE
CAN DO STATEWIDE PREVALENCE IN
AN EASIER WAY WITH LESS RESOURCE
INTENSE, OF COURSE WE DON'T GET
ALL OF THE INFORMATION.
RIGHT NOW MANY STATES DON'T HAVE
GOOD AUTISM PREVALENCE DATA, AND
SO I THINK THAT THIS STUDY
BRINGS GREAT VALUE.
AND THEN GO BACK TO THE FIRST
PAGE ON THIS, THERE IS -- ARE
YOU ABLE TO GO UP ONE SLIDE?
>>YES.
>>YEAH, THE HUGHES PAPER.
LOOKED AT DIAGNOSTIC PATTERNS,
SO WAS ABLE TO LOOK AT THE
16-YEAR-OLDS THAT WE NOW HAVE IN
OUR SYSTEM, AND CO-OCCURRING
CONDITIONS AND BETTER UNDERSTAND
SO, FOR EXAMPLE, THEY LOOKED AT
TRANSITION PLANS WHO HAD THEM,
TWO DIDN'T, AND FOUND, FOR
EXAMPLE, THOSE WITH INTELLECTUAL
DISABILITIES WERE NOT -- WERE
LESS LIKELY TO HAVE TRANSITION
PLANS.
I THINK THAT'S REALLY IMPORTANT
INFORMATION.
ALSO, WE'RE ABLE TO FIND THOSE
WITH CO-OCCURRING MENTAL HEALTH
CONDITIONS, I'M PROBABLY GOING
TO SAY THIS WRONG, HAD LATER
DIAGNOSES, THERE MAY HAVE BEEN
MORE CONFUSION AROUND DIAGNOSES
EARLIER, AND SO THAT MAY HAVE
LED TO THIS IS MORE OF A
HYPOTHESIS BUT MAY HAVE LED TO A
LATER DIAGNOSIS, SO I THINK
THERE'S SOME REAL VALUABLE
INFORMATION IN THESE AND WOULD
ENCOURAGE FOLKS TO TAKE A LOOK
AT THEM.
>>THANK YOU SO MUCH, KARYL, FOR
THAT EXTRA INFORMATION ABOUT
THOSE PAPERS.
AND ARE THERE OTHER COMMENTS
THAT ANYONE HAS ON THESE?
JUST TO NOTE FOR EVERYONE IF YOU
NOTICE QUESTION 7 INFRASTRUCTURE
AND PREVALENCE,ED USED TO BE
INFRASTRUCTURE AND SURVEILLANCE,
AND SOME THOUGHT THAT MEANT BIG
BROTHER, SO WE CHANGED TO
PREVALENCE TO MAKE IT CLEARER
AND A LITTLE BIT MORE PLAIN
LANGUAGE.
SO THAT HAS BEEN A RECENT CHANGE
WITHIN THE LAST YEAR.
ALL RIGHT.
I'M NOT SEEING ANY OTHER
COMMENTS.
YOU DON'T SEE ANY SHELLI?
>>NO, YOU'RE CLEAR.
>>OKAY.
LET ME GIVE YOU A SUMMARY.
WE HAVE A LITTLE BIT LESS ON
COMMITTEE BUSINESS TODAY BECAUSE
WE DIDN'T HAVE A BIG PROJECT TO
DISCUSS.
AND THANK YOU AGAIN FOR ALL THE
WORK THAT WENT INTO THE
STRATEGIC PLAN.
WE LOOK FORWARD TO RELEASING
THAT SOON.
AND WE WOULD ENCOURAGE YOU TO
CONTINUE SENDING ARTICLE
NOMINATIONS TO OUR OFFICE, TO
THE IACC SUMMARY OF ADVANCES OR
IF YOU'RE IN THE MIDDLE OF DOING
SOMETHING AND DON'T KNOW WHERE
THE E-MAIL IS YOU CAN SEND THEM
TO ME AND WE WILL GET THEM IN.
SO WE TAKE THEM ALL YEAR ROUND
AND SEND YOU REMINDERS QUARTERLY
FOR THOSE.
AND DID I SEE, WAS THERE A
COMMENT THAT SOMEBODY WAS TRYING
TO MAKE?
>>I DON'T SEE ONE, SUSAN.
>>OKAY.
SOMETHING FLASHED ON MY SCREEN,
I WASN'T SURE WHAT THAT WAS.
AND WE ALSO WILL BE DISCUSSING
NEW NOMINATIONS FOR THE IACC
SUMMARY OF ADVANCES IN OCTOBER,
AND SHARING WITH YOU THE 2022
PUBLICATION.
SO, WITH THAT, I BELIEVE WE CAN
CONCLUDE OUR IACC COMMITTEE
BUSINESS A LITTLE BIT EARLY AND
HAVE A LITTLE MORE TIME FOR
LUNCH.
SO WE WILL TAKE A BREAK UNTIL
1:00.
I BELIEVE WE'RE RIGHT AT ABOUT
NOON.
SO WE WILL HAVE A ONE-HOUR BREAK
AND WE'LL COME BACK PROMPTLY AT
1:00, AND TAKE OUR PUBLIC
COMMENTS AT THAT TIME.
SO, I HOPE EVERYONE ENJOYS YOUR
LUNCH.
THANK YOU SO MUCH FOR YOUR
PARTICIPATION IN OUR COMMITTEE
BUSINESS TODAY.
THANK YOU.
>>WELCOME BACK.
WE'RE YESTERDAYY TO START THE
PUBLIC COMMENT.
>>I LOOK FORWARD TO THE PUBLIC
COMMENTS BUT I'LL TURN IT TO
SUSAN DANIELS TO INTRODUCE EACH
OF THE PUBLIC SPEAKERS AND ALSO
WHAT'S GOING TO HAPPEN DURING
THIS SESSION.
>>WE'LL START WITH ORAL PUBLIC
COMMENTS.
WE WANT TO BE RESPECTFUL OF
EVERYONE AS THEY ARE GIVING
THEIR PUBLIC COMMENTS, AND WE
WILL LISTEN TO ORAL COMMENTS
FIRST AND WRITTEN COMMENTS AND
HAVE TIME FOR DISCUSSION.
WE'LL START WITH DR. GERALDINE
DAWSON ON THE LIST.
>>THANK YOU FOR THIS
OPPORTUNITY TO MAKE PUBLIC
COMMENTS AT THE INTERAGENCY
AUTISM COORDINATING COMMITTEE,
I'M PROFESSOR A DUKE UNIVERSITY,
DIRECTOR OF DUKE CENTER
I'D LIKE TO DRAW YOUR ATTENTION
TO A PROPOSAL TO MAKE TWO
CHANGES TO THE REQUIREMENTS FOR
PEDIATRIC RESIDENT TRAINING THAT
WOULD NEGATIVELY IMPACT CARE OF
PATIENTS AND FAMILIES.
I PROVIDED A LINK TO THE
PROPOSED CHANGES IN MY SUBMITTED
LETTER.
FIRST CHANGE WOULD REMOVE THE
CURRENT REQUIREMENT TO HAVE A
DEVELOPMENTAL BEHAVIORAL
PEDIATRICIAN, SECOND FOR
LONGITUDINAL CARE OF CHILDREN
WITH SPECIAL HEALTH CARE NEEDS.
THE U.S. HEALTH CARE SYSTEM IS
CURRENTLY INADEQUATE TO MEET
HEALTH CARE NEEDS OF AUTISTIC
INDIVIDUALS, PRIMARY CARE
PEDIATRICIAN PLAYS A CRUCIAL
ROLE IN SCREENING, REFERRAL FOR
DIAGNOSIS, AND ADDRESSING
SUBSTANTIAL HEALTH-RELATED
CHALLENGES ASSOCIATED WITH
AUTISM, INCLUDING INCREASED
NEUROLOGICAL, OPHTHALMOLOGICAL
AND GASTROINTESTINAL PROBLEMS,
AMONG OTHERS.
PRIMARY CARE PEDIATRICIANS ARE
THE MEDICAL HOME FOR AUTISTIC
CHILDREN AND ENTRY POINT FOR
EARLY DETECTION AND REFERRAL FOR
EVALUATION AND BEHAVIORAL AND
PHYSICAL HEALTH SERVICES.
MEDICAL TRAINING ABOUT PATIENTS
WITH AUTISM AND OTHER
NEURODEVELOPMENTAL CONDITIONS IS
ESSENTIAL FOR OUR FUTURE MEDICAL
WORKFORCE.
RESEARCH HAS DOCUMENTED
SUBSTANTIAL IMPACT OF
CO-OCCURRING MEDICAL CONDITIONS
ON QUALITY OF LIFE FOR AUTISTIC
INDIVIDUALS AND IMPORTANT ROLE
OF MEDICAL TRAINING IN
ADDRESSING THE COMPLEX HEALTH
CARE NEEDS OF AUTISTIC PATIENTS.
REMOVING REQUIREMENT FOR
ADEQUATE EXPOSURE TO PATIENTS
WITH NEURODEVELOPMENTAL
CONDITIONS AND OTHER SPECIAL
HEALTH CARE NEEDS IN MEDICAL
TRAINING WOULD REPRESENT A
SIGNIFICANT STEP BACKWARD FROM
REACHING THE GOAL OF MEETING
HEALTH CARE NEEDS OF AUTISTIC
INDIVIDUALS.
WITH SIGNIFICANT LONG-TERM
CONSEQUENCES FOR HEALTH, QUALITY
OF LIFE, AND MORTALITY IN
ADULTHOOD.
AS THE NATIONAL BODY THAT
OVERSEES RESEARCH, SERVICES, AND
POLICY RELATED TO IMPROVING
QUALITY OF LIFE FOR AUTISTIC
INDIVIDUALS, I URGE THE IACC TO
PROVIDE COMMENTS TO THE
ACCREDITATION COUNCIL ABOUT THIS
PROPOSAL WHICH CAN BE SUBMITTED
DIRECTLY AT THE WEBSITE, AND I
PROVIDED THIS WEBSITE IN MY
LETTER.
PLEASE NOTE THAT THE DEADLINE
FOR SUBMITTING THESE COMMENTS IS
TOMORROW, APRIL 5th, 2023.
THANK YOU AGAIN FOR ALLOWING ME
TO HAVE AN OPPORTUNITY TO
ADDRESS THE IACC.
>>GERRI IS A FORMER MEMBER, AND
WE HAVE TWO TODAY GIVING ORAL
COMMENTS.
THANK YOU FOR BEING HERE.
WE'LL WAIT TO HAVE DISCUSSION
UNTIL THE DISCUSSION PERIOD.
WE'LL GO TO THE NEXT QUESTION,
THE NEXT COMMENTER, DR. MIYA
ASATO.
>>GOOD AFTERNOON.
THANK YOU FOR ALLOWING ME TO
SHARE SOME COMMENTS TODAY.
BY WAY OF INTRODUCTION, I AM THE
VICE PRESIDENT OF TRAINING AT
KENNEDY KRIEGER INSTITUTE IN
BALTIMORE, MARYLAND, AND I'M
ALSO THE DIRECTOR OF THE LEND
PROGRAM, LEADERSHIP EDUCATION IN
NEURODEVELOPMENTAL DISABILITIES
AT THE INSTITUTE.
I'M A PROFESSOR OF NEUROLOGY AND
PEDIATRICS AT JOHNS HOPKINS
SCHOOL OF MEDICINE, I DID A FULL
PEDIATRICS RESIDENCY AND THEN
TRAINED IN CHILD NEUROLOGY, MY
SPECIALTY IS IN
NEURODEVELOPMENTAL DISABILITIES,
I'M THE PROGRAM DIRECTOR FOR THE
NEURODEVELOPMENTAL DISABILITIES
RESIDENCE TRAINING PROGRAM AT
KENNEDY KRIEGER.
AS DR. DAWSON MENTIONED, REMOVAL
OF REQUIREMENTS TO HAVE A
DEVELOPMENTAL BEHAVIOR
PEDIATRICIAN AS PART OF THE
TRAINING FACULTY IN PEDIATRIC
RESIDENCY PROGRAMS IS REALLY
PERHAPS A REFLECTION OF THE
SHIFTING NEEDS OF PEDIATRICIANS
TO BE ABLE TO ADDRESS MORE
PSYCHIATRIC ISSUES THAN EVER
BEFORE, AND ALSO DUE TO THE
SHORTAGES OF DEVELOPMENTAL
BEHAVIORAL PEDIATRICS FACULTY ON
THE NATIONAL LEVEL.
SO THE ESSENCE OF PEDIATRICS
RESIDENCY TRAINING IS TO
UNDERSTAND AND TREAT THE
EMOTIONAL, PHYSICAL, AND
DEVELOPMENTAL NEEDS OF CHILDREN
FROM BIRTH TO THE TRANSITION TO
ADULT CARE.
AND SO, WITHOUT UNDERSTANDING
WHAT THE TEMPLATE IS OF WHAT IS
WITHIN THE WIDE RANGE OF WHAT IS
TYPICAL, THERE WILL BE A
FUNDAMENTAL SHIFT IN WHAT
PEDIATRICIANS KNOW ABOUT CHILD
DEVELOPMENT AND MAY CONSEQUENTLY
IMPACT I THINK THE DEVELOPMENTAL
HEALTH OF GENERATIONS OF FUTURE
CHILDREN, IF THIS CHANGE WERE TO
GO FORWARD.
AS WAS MENTIONED EARLIER,
PEDIATRICIANS PLAY A CRUCIAL
ROLE OF BEING THE MEDICAL HOME
BUT ALSO THE GATE KEEPERS.
SO, WITHOUT BEING TRAINED, WHAT
TO LOOK FOR, IN TERMS OF SIGNS
FOR POTENTIAL AUTISM,
INTELLECTUAL DISABILITY, OR
OTHER DISORDERS, WITHIN THE
CONTEXT OF PEDIATRIC OUTPATIENT
SETTINGS, PEDIATRICIANS WILL
CONTINUE TO FEEL UNCOMFORTABLE
ABOUT DEVELOPMENTAL ISSUES.
THIS IS ALL ALREADY A PROBLEM
ACROSS PEDIATRIC PRACTICES, AS
WELL AS PEDIATRIC SPECIALISTS.
AND BY DIMINISHING THE CENTRAL
FOCUS OF THE PEDIATRICS
RESIDENCY TRAINING, THEY
TYPICALLY GET A MONTH OF
DEVELOPMENTAL TRAINING, AND
SHIFTING THE BURDEN OF THIS
TRAINING TO OTHER PROFESSIONALS,
THIS MAY UNINTENTIONALLY CREATE
A GENERATION OF PEDIATRICIANS
WHO ARE UNPREPARED FOR THEIR
FUTURE ROLE IN DEVELOPMENTAL
SUPERVISION.
WITHOUT REQUIRING DEVELOPMENTAL
BEHAVIORAL PEDIATRICIANS TO BE
ROLE MODELS, AS TEACHERS, THE
POSITIONS FOR THESE FELLOWSHIPS
AS IT IS A FELLOWSHIP-TRAINED
POSITION, WILL CONTINUE TO BE
INJEOPARDY, IMPACTING THE FUTURE
TEACHING WORKFORCE.
[AUDIO DISTORTION]
BEING ASKED OF THEM THEY WILL
REFER TO OTHER SPECIALISTS,
CURRENTLY WHEN A PEDIATRICIAN IS
CONCERNED WHEN A CHILD IS
DELAYED OR MAY HAVE A DISORDER
SUCH AS AUTISM, THEY WILL OFTEN
REFER TO A DEVELOPMENTAL
PEDIATRICIAN OR TO A PHYSICIAN
SUCH AS MYSELF, ANOTHER
NEURODEVELOPMENTAL SPECIALIST.
IF THEY DON'T UNDERSTAND WHAT
DEVELOPMENTAL PEDIATRICIANS DO,
OR IF THERE'S NO WORKFORCE
AVAILABLE, THE REFERRAL PATTERN
WILL SHIFT TO OTHER PROFESSIONS
WHO MAY BE VERY UNPREPARED FOR
THIS CHANGE.
AND BY SHIFTING THIS ROLE TO
OTHERS, THIS WILL ALREADY ADD TO
THE VERY LONG WAIT TIMES, AND
MAY INCREASE AGE OF DIAGNOSIS OF
ASD AND DELAY THE START OF
SERVICES.
NOW, IT'S IMPORTANT TO NOTE IN
THE LANGUAGE THAT THE ACGME IS
MENTIONING IN THEIR PROPOSED
DOCUMENTS THAT THEY ARE
MENTIONING SOME ALTERNATE
PROFESSIONS WHO ARE NOT TRAINED
IN TYPICAL DEVELOPMENT, AND THEY
MAY HAVE A POOR AWARENESS OF THE
COMPLEXITIES OF THE VARIOUS
PEDIATRIC DISEASES WHICH MAY
ALTER DEVELOPMENTAL
TRAJECTORIES.
CHILDREN WITH MEDICAL
COMPLEXITIES AND THEIR FAMILIES
NEED THE COMBINED EXPERTISE OF
PEDIATRIC PHYSICIANS, AND
DEVELOPMENTAL KNOWLEDGE OF A
DEVELOPMENTAL SPECIALIST, SUCH
AS A DPP OR NDD SPECIALIST.
SO COMPREHENSIVE PROGRAMS SUCH
AS DOWN SYNDROME CENTERS ARE
OFTEN LED BY THESE TYPES OF
PROFESSIONALS.
THEY PROVIDE A MEDICAL HOME,
PROVIDE CARE SUPERVISION, AND
MANAGEMENT.
AND THESE CENTERS PLAY AN
IMPORTANT ROLE IN FORGING
PATHWAYS AND STANDARDS OF CARE
FOR TRANSITION TO ADULT SYSTEMS
WHICH REMAIN A SIGNIFICANT NEED
FOR MANY YOUNG ADULTS WITH
COMPLEX NEEDS AND DISABILITIES.
THE WORKFORCE AVAILABLE TO
ADDRESS PATIENTS -- PARENTS'
CONCERNS AROUND DEVELOPMENT IS
ALREADY AT A CRISIS POINT.
IF PEDIATRICIANS DON'T RECEIVE
ADEQUATE TRAINING AND
UNDERSTANDING THE COMPLEX NEEDS
OF CHILDHOOD DISABILITIES, IT IS
POSSIBLE THAT THE LIMITED
SERVICES AND SUPPORTS CHILDREN
CURRENTLY RECEIVE MAY BE UNDER
FURTHER PERIL DUE TO LIMITED
UNDERSTANDING OF CHRONICITY AND
EXTENT OF SERVICES CHILDREN WITH
DISABILITIES NEED IN BOTH
MEDICAL AND COMMUNITY SETTINGS.
SO IN CONCLUSION, I URGE THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE TO EXPRESS CONCERNS
AND CONSIDER ADVOCACY FOR
MECHANISMS SUCH AS FEDERAL AND
STATE FUNDING TO SUPPORT
EXISTING CLINICS TO IDENTIFY AND
TREAT CHILDREN WHO ARE AT RISK
FOR DEVELOPMENTAL DISORDERS.
DEVELOPMENTAL CLINICS DO NOT
FAREWELL IN TERMS OF METRICS, SO
CONSIDERATION OF JOINT FUNDING
RESOURCES SHOULD BE CONSIDERED
AS POTENTIAL PECK -- MECHANISMO
SUPPORT CARE.
THANK YOU FOR YOUR ATTENTION.
>>THANK YOU.
NEXT COMMENTER IS ANTHONY TUCCI.
>>THANK YOU FOR THE OPPORTUNITY
TO SUBMIT COMMENTS TODAY.
I'M A PARENT OF A 19-YEAR-OLD
SON WHO HAS AUTISM, AND IS A
NON-SPEAKER.
I'M AN ADVOCATE FOR THE RIGHTS
OF ALL PEOPLE WITH ASD, AND I'M
STRONGLY COMMITTED TO LEARNING
ABOUT AUTISM RESEARCH AND
EVIDENCE-BASED INTERVENTIONS.
I'M OFFERING COMMENTS AROUND TWO
MAIN THEMES THIS AFTERNOON.
THINK NUMBER ONE WE NEED MORE
RESEARCH THAT PROMOTES EFFECTIVE
INTERVENTIONS LED BY INDEPENDENT
AND QUALIFIED TEAMS OF
MULTI-DISCIPLINARY AND
INTRADISCIPLINARY RESEARCHERS.
LACK OF RESEARCH DELAYS
EFFECTIVE INTERVENTIONS AND
POSSIBLE CONFIRMATION THAT PRIOR
FINDINGS WERE INACCURATE.
IT IS MY STRONG BELIEF THAT
MULTI-DISCIPLINARY AND
INTERDISCIPLINARY RESEARCH
APPROACH TO RESEARCH OFFERS THE
BEST OPPORTUNITIES TO
EFFECTIVELY UNDERSTAND THE
COMMUNICATIONS OF INDIVIDUALS
WITH ASD.
THE NCCIH HAS OFFERED AMAZING
INSIGHT ON VALUE OF USING A
CROSS-DISCIPLINARY APPROACH TO
DRAW A BRIDGE BETWEEN THE
DEEP-ROOTED SILOS IN THE FIELD
OF MEDICINE AND HEALTH.
IACC'S 2023 STRATEGIC PLAN
MASTERFULLY CALLS FOR
RESEARCHERS TO DEVELOP NEW
APPROACHES AND TECHNOLOGIES TO
HELP INDIVIDUALS WITH
COMMUNICATION CHALLENGES, AND TO
DELIVER INNOVATIVE SCIENTIFIC
RESEARCH WHILE FOSTERING
COLLABORATION.
THIS STRATEGIC PLAN IS PERFECTLY
CALIBRATED TO EFFECTIVELY --
[ NO AUDIO ]
>>SEEMS WE HAVE A TECHNICAL
DIFFICULTY FOR OUR SPEAKER.
LET'S SEE IF CAN HE LOG BACK ON.
NOT SEEING HIM.
MAYBE WE WILL GO TO THE NEXT
SPEAKER AND COME BACK TO
MR. TUCCI WHEN HE'S ABLE TO LOG
BACK ON.
HE SEEMED LIKE HAD HE A BAD
CONNECTION.
ALL RIGHT.
SO WE'LL NEXT HAVE CHRIS BANKS,
FROM AUTISM SOCIETY.
>>THANK YOU FOR ALLOWING ME TO
SPEAK BEFORE THE IACC TODAY.
I'M CHRISTOPHER BANKS, PRESIDENT
AND CEO OF AUTISM SOCIETY OF
AMERICA.
THIS APRIL SOCIETY IS PROUD TO
CONTINUE ITS FIFTH ANNUAL
CELEBRATE DIFFERENCES CAMPAIGN
IN HONOR OF AUTISM ACCEPTANCE
MONTH.
EVERY DAY WE WORK TO CREATE
CONNECTIONS.
EMPOWERING PEOPLE IN THE AUTISM
COMMUNITY TO LIVE FULLY.
WE BELIEVE ACCEPTANCE IS
CREATING A WORLD WHERE EVERYONE
IN THE AUTISM COMMUNITY IS
CONNECTED TO THIS, WHAT THEY
NEED, WHEN THEY NEED IT.
AND BY EVERYONE.
WE MEAN EVERY UNIQUE INDIVIDUAL,
IMPLACABLE, IMMUTABLE.
IRREPLACEABLE VIEW.
I WOULD LIKE TO SHARE AN
OVERVIEW OF HEALTH EQUITY WORK
AND HIGHLIGHT OUR PROGRAMMATIC
IMPACT AROUND ACCESSIBLE
VACCINATIONS.
HEALTH EQUITY IS FOUNDATION FOR
A HEALTHY LIFE.
AUTISM COMMUNITY FACES UNIQUE
BARRIERS TO ACCESSING CARE.
RESULTING IN HEALTH CARE
INEQUITIES WHICH ARE EXACERBATED
BY SOCIAL AND ECONOMIC FACTORS.
THESE INEQUITIES CAN RESULT IN
DIFFERENCES IN LENGTH AND
QUALITY OF LIFE, DISEASE RATES,
ACCESS TO TREATMENT, DISABILITY,
AND DEATH.
TOO OFTEN BARRIERS CARE ARE
VIEWEDDED AS PATIENT BARRIERS N
THEY ARE SYSTEMS BARRIERS
CONTRIBUTING TO TRUST BARRIERS,
TO REALIZE HEALTH EQUITY WE MUST
WORK TOGETHER TO REDUCE BARRIERS
AND CREATE ACCESSIBLE SOLUTIONS.
IN 2021 THE AUTISM SOCIETY
RECEIVED FUNDING FROM THE CDC
THROUGH A SUBGRANT TO ADDRESS
VACCINE HESITANCY, A
LONGSTANDING ISSUE WITHIN THE
AUTISM COMMUNITY THAT HAS
PERPETUATED BY ACCESS TO
BARRIERS AND TRUST BARRIERS.
AUTISM SOCIETY DEVELOPED ITS
VACCINE EDUCATION INITIATIVE,
VEI, TO ADVANCE THROUGH A FOCUS
ON EDUCATION, COMPETENCE,
ACCESSIBILITY.
THE VEI IS TAILORED PUBLIC
HEALTH MODEEL THAT REDUCES
BARRIERS FACED BY THE AUTISM
COMMUNITY BY SUPPORTING AUTISTIC
INDIVIDUALS, FAMILIES,
CAREGIVERS, HEALTH CARE
PROVIDERS AND SYSTEMS.
WE HAVE 12 AFFILIATES TO LEARN
FROM OUR COMMUNITY, IDENTIFY
BEST PRACTICES, TRAIN
PROFESSIONALS, SUPPORT
INDIVIDUALS, AND FAMILIES, FOR
IMPROVED VACCINE EXPERIENCE.
WE HAVE AN OPPORTUNITY IMPACT
LASTING CHANGE BY PROMOTING
VACCINE EDUCATION WITHIN THE
AUTISM AND DISABILITY COMMUNITY,
SO THAT INDIVIDUALS, FAMILIES
AND CAREGIVERS ARE EMPOWERED
WITH KNOWLEDGE THEY NEED TO MAKE
INFORMED DECISIONS.
EQUIPPING HEALTH CARE PROVIDERS
WITH TRAINING, RESOURCES THEY
NEED TO MEET UNIQUE AND DIVERSE
HEALTH CARE NEEDS IN THE AUTISM
COMMUNITY WHICH SUPPORTS
UNIVERSAL ACCESSIBILITY.
CREATING COMMUNITY CONNECTIONS
THAT LEAD TO IMPROVED PATIENT
PROVIDER CONFIDENCE,
COMMUNICATION, INTERACTION,
OUTCOMES.
WE'RE HAPPY TO REPORT EARLIER
THIS YEAR RECEIVED ADDITIONAL
FUNDING THROUGH THE
ADMINISTRATION FOR COMMUNITY
LIVING, WORKING WITH U.S. AGING,
THAT WILL ALLOW US TO EXPAND
D.E.I. PROGRAM WITHIN OUR
NETWORK OF 70 AFFILIATES, 34
STATES, IN THE GREATER SCOPE OF
EQUITY FOCUS SPOTLIGHTING CRISIS
OF UNDERPAID AND UNDERSTAFFED
DIRECT SUPPORT PROFESSIONALS,
INEQUITABLE ACCESS TO HOME AND
COMMUNITY-BASED SERVICES AND
SYSTEMATIC BARRIERS AMONG
PRIORITIES THAT IMPACT AUTISTIC
AMERICANS.
WE WAS PREVIOUSLY REMARKED AT A
PREVIOUS MEETING WITH THIS GROUP
ON THE CRISIS IN OUR SERVICE
CENTERS, WE'LL CONTINUE THROUGH
THE PUBLIC POLICY EFFORTS AND
NATIONAL PROGRAMS TO ADDRESS
NEEDS OF PEOPLE IN THE AUTISM
COMMUNITY, OTHER AREAS OF HEALTH
EQUITY INCLUDE MENTAL HEALTH,
SUICIDE PREVENTION, LAW
ENFORCEMENT TRAINING, AND FIRST
RESPONDER TRAINING.
LASTLY, I WANT TO ECHO CONCERNS
PREVIOUSLY PROVIDED TODAY
REGARDING ISSUE OF TRAINING FOR
MEDICAL PROFESSIONALS TO WORK
WITH PEOPLE WITH AUTISM.
IMPROVED TRAINING FOR HEALTH
CARE PROFESSIONALS IS A CORE
NEED THAT HAS EMERGED OUT OF OUR
HEALTH EQUITY WORK.
AS OTHERS HAVE MENTIONED, THE
RECENT CHANGES IN THE PEDIATRIC
RESIDENCY EDUCATION PROPOSED BY
ACCREDITATION COUNCIL FOR
GRADUATE MEDICAL EDUCATION WILL
RESULT IN EVEN FEWER
DEVELOPMENTAL PEDIATRICIANS TO
SCREEN AUTISM AND DISABILITIES
TO ACHIEVE FULL HEALTH
PROFESSION.
THE SOCIETY WILL BE PROVIDING
COMMENTS TO OPPOSE THESE
CHANGES.
STAKEHOLDERS HAVE UNTIL APRIL
5th TO PROVIDE FEEDBACK ON A
PROPOSAL AND BRING ABOUT COURSE
CORRECTION.
AUTISM ACCEPTANCE MONTH, ALL
SOCIETY OF AMERICA WILL
HIGHLIGHT ITS WORK TO IMPACT AND
ENSURE ACCESSIBLE EXPERIENCES IN
HEALTH CARE AND OTHER SOCIAL
DETERMINANTS OF HEALTH.
I THANK YOU ALL FOR ALLOWING ME
TO COVER THESE IMPORTANT TOPICS
TODAY.
>>THANK YOU SO MUCH FOR THOSE
COMMENTS, MR. BANKS.
AND NEXT I'D LIKE TO WELCOME
BACK IDIL ABDULL.
>>GOOD AFTERNOON.
DEAR MR. CHAIRMAN, MANY THANKS
FOR THE OPPORTUNITY TO SPEAK
TODAY.
I AM A AUTISM MOM AND RETIRING
ADVOCATE.
FIRST I WOULD THANK DR. DANIELS
FOR HER SUPPORT AND GUIDANCE IN
THE SOMALI AUTISM COMMUNITY IN
MINNESOTA AS WELL AS ALL AUTISM
FAMILIES ACROSS THE NATION.
I WAS LUCKY ENOUGH AS DR.
DANIELS SAID TO BE PART OF IACC
ALMOST A DECADE AGO NOW, MY
GOODNESS.
WE'VE MADE A LOT OF PROGRESS
BACK THEN, AND YOU ALL NOW HAVE
MADE MORE PROGRESS.
THERE ARE TWO AREAS WE STILL
NEED MORE WORK AND SUPPORT,
HOWEVER.
LET ME START WITH ADULT
SERVICES.
MY SON NOW IS 20 YEARS OLD, WILL
BE 21 IN JULY OF THIS YEAR.
THERE ARE ALMOST NO SERVICES FOR
ADULTS WITH AUTISM IN MINNESOTA
AND NATIONWIDE.
OUR CHILDREN GROW AND BECOME
ADULTS BUT WE AS A NATION ARE
NOT READY FOR THEM.
THE SYSTEM IS SIMPLY NOT SET UP
FOR ADULTS WITH AUTISM FROM
EMPLOYMENT TO HOUSING, TO
SAFETY, AND IN BETWEEN.
ONE OF MY BIGGEST WORRIES IN
LIFE IS WHO WILL CARE FOR MY SON
WHEN I'M NO LONGER HERE.
I WANT TO ASK IACC MEMBERS
PARTICULARLY THE FEDERAL
AGENCIES THAT OVERSEE ADULT
SERVICES TO CONCENTRATE MORE ON
NOT JUST RESEARCH BUT ON
SERVICES AND SUPPORT FOR ADULTS
WITH AUTISM, THEY WILL NEED
HOUSING THAT IS CULTURALLY
RESPONSIVE AND EMPLOYMENT THAT'S
FULFILLING AND REWARDING.
THEY WILL ALSO NEED TO BE SAFE
IN THEIR COMMUNITIES, INCLUDING
WITH LAW ENFORCEMENT.
WE MUST MAKE SURE ADULTS WITH
AUTISM ARE ABLE TO LIVE AND WORK
SAFELY WITH DIGNITY AND RESPECT
IN THEIR COMMUNITIES.
MY SECOND REQUEST IS ABOUT THE
ABILITY TO COMMUNICATE, AS YOU
MAY HAVE HEARD SOMALIS ARE AN
ORAL SOCIETY, SADLY MOST OF OUR
CHILDREN INCLUDING MY SON HAVE
NON-VERBAL AUTISM.
IN OTHER WORDS, AUTISM IS
SILENCING A NATION OF POETS,
KNOWN FOR THEIR ORAL
COMMUNICATION.
I THANK DR. KASARI OUT OF UCLA
AND DR. HELEN OUT OF BOSTON
UNIVERSITY BUT WE NEED MORE
RESEARCH TEACHING KIDS TO
COMMUNICATE FROM THEIR HEARTS,
MINDS, VIA SPELLING.
THERE IS A LIMITED SYSTEM.
I ASK IACC TO RAISE AWARENESS OF
THE SPELL TO COMMUNICATE METHOD,
TO HAVE INSURANCE COMPANIES AND
MEDICAID VIA CMS COVERAGE AND TO
ENSURE WE'RE GETTING EVERY
INDIVIDUAL WITH AUTISM THE
OPPORTUNITY TO BE ABLE TO TELL,
TO SAY, WHAT THEY WANT, WHAT
THEY NEED, WHAT THEY ARE
THINKING AND TELL US THEIR
DREAMS.
I WOULD GIVE EVERY ORGAN IN MY
BODY FOR MY SON TO BE ABLE TO
SPEAK ORALLY.
IT IS MY HOPE THAT ONE DAY, GOD
WILLING, HE WILL TELL ME HIS
THOUGHTS, WANTS, AND NEEDS.
I WOULD LOVE TO ASK MY KID, AND
HAVE HIM ANSWER ME, WHY HE LIKES
TO LISTEN TO THAT '70s SONG,
OOH CHILD THINGS ARE GONNA GET
EASIER.
♪
WHILE WE'RE IN THE CARE, OR
BETTE MIDLER WHEN TRAVELING OUT
OF STATE.
YOU SEE, MR. CHAIR AND MEMBERS,
INDIVIDUALS WHO ARE NOT VERBAL
AUTISM ARE SMART, FUNNY,
THOUGHTFUL, AND WANT TO LIVE A
HAPPY, HEALTHY, AND SAFE LIFE
JUST LIKE ALL OF US DO.
I RESPECTFULLY IACC TO TACKLE
THESE INCREDIBLY IMPORTANT
ISSUES.
THANK YOU SO MUCH FOR YOUR TIME.
>>THANK YOU.
NEXT WE GO BACK TO ANTHONY TUCCI
WHO WAS ABLE TO LOG BACK ON.
>>I'M NOT SURE WHERE I CUT OFF
SO I'LL START FROM THE
BEGINNING.
I APPRECIATE THE OPPORTUNITY TO
PRESENT MY COMMENTS THIS
AFTERNOON I'M THE PARENT OF A
19-YEAR-OLD SON WITH AUTISM,
NON-SPEAKER.
ADVOCATE FOR RIGHTS OF ALL
PEOPLE WITH ASD.
AND I'M STRONGLY COMMITTED TO
LEARNING ABOUT AUTISM RESEARCH
AND EVIDENCE-BASED
INTERVENTIONS.
MY COMMENTS WILL REVOLVE AROUND
TWO MAIN THEMES.
THEME 1, WE NEED MORE RESEARCH
THAT PROMOTES EFFECTIVE
INTERVENTIONS LED BY INDEPENDENT
AND QUALIFIED TEAMS OF
MULTI-DISCIPLINARY AND
INTERDISCIPLINARY RESEARCHERS.
THE LACK OF SUFFICIENT QUALITY
RESEARCH DELAYS THE EFFECTIVE
INTERVENTIONS, AND POSSIBLE
CONFIRMATIONS THAT PRIOR
FINDINGS WERE INACCURATE.
IT IS MY STRONG BELIEF THAT A
MULTI-DISCIPLINARY AND
INTERDISCIPLINARY APPROACH
OFFERS THE BEST OPPORTUNITIES TO
UNDERSTAND COMMUNICATION
CHALLENGES OF INDIVIDUALS WITH
ASD.
THE NCCIH HAS OFFERED AMAZING
INSIGHT ON THE VALUE OF USING A
CROSS-DISCIPLINARY APPROACH TO
DRAW A BRIDGE BETWEEN THE
DEEP-ROOTED SILOS IN THE FIELD
OF MEDICINE AND HEALTH.
IACC'S 2023 STRATEGIC PLAN
MASTERFULLY CALLS FOR
RESEARCHERS TO DEVELOP NEW
APPROACHES AND TECHNOLOGIES TO
HELP INDIVIDUALS WITH
COMMUNICATION CHALLENGES.
AND DELIVER INNOVATIVE
SCIENTIFIC RESEARCH WHILE
FOSTERING COLLABORATION.
THE STRATEGIC PLAN IS PERFECTLY
CALIBRATED TO EFFECTIVELY
RESOLVE RESEARCH GAPS INVOLVING
TECHNIQUES LIKE SPELLING TO
COMMUNICATE USED BY SOME
NON-SPEAKERS.
NOW IT IS UP TO THE SCIENTIFIC
COMMUNITY TO COLLABORATE AND TO
ENGAGE IN CROSS-DISCIPLINARY
RESEARCH SO THAT THEY CAN
REPLACE RESEARCH GAPS OFTEN
FILLED WITH ONE-SIDED BIAS, AND
SPECULATION, WITH INDEPENDENT
WISDOM.
HUMAN RIGHTS MUST ALWAYS LEAD AN
EVIDENCE-BASED MODEL.
RESEARCH GAPS OR DISAGREEMENTS
BETWEEN PROFESSIONALS SHOULD
NEVER SERVE TO CONDONE
UNPROFESSIONAL TURF WARS,
SIMILARLY NON-SPEAKERS SHOULD
NEVER BE CONDEMNED FOR SELECTING
A MODE OF COMMUNICATION THAT HAS
PROVEN TO BE EFFECTIVE FOR THEM.
THIS MISGUIDED ADVOCACY VIOLATES
THE COMMUNICATION RIGHTS AND
ETHICAL RIGHTS OF NON-SPEAKERS,
REPRESENTING A VIOLATION OF THE
EVIDENCE-BASED PRACTICE MODEL.
TO HELP PREVENT THESE TYPES OF
CHALLENGES, WE'RE ASKING THAT
IACC FORM A COMMITTEE THAT CAN
HELP GUIDE THE SCIENTIFIC
COMMUNITY TO DEVELOP APPROPRIATE
DUE PROCESS METHODS BEFORE
PROFESSIONAL TRADE ASSOCIATIONS
ISSUE PHYSICIAN STATEMENTS THAT
MAY HAVE EFFECTIVE DENYING
COMMUNICATION RIGHTS.
THIS PROCESS WILL HELP TO ENSURE
THAT RESEARCH WHICH INFORMS
POSITION PAPERS WILL BE GUIDED
BY INDIAN INDEPENDENCE,
FAIRNESS, AND DEEP PRACTICE
SCIENCE.
EXPERTS ON BOTH SIDES OF THE
AISLE WILL BE GIVEN A FAIR
OPPORTUNITY TO PRESENT THEIR
BEST SCIENTIFIC EVIDENCE IN AN
UNBIASED INDEPENDENT PROCESS.
THANK YOU VERY MUCH.
>>THANK YOU FOR YOUR COMMENTS.
THAT WORKED WELL THIS TIME
AROUND, THANK YOU FOR YOUR
PATIENCE.
>>THANK YOU.
>>AND OUR FINAL ORAL COMMENTER
TODAY WILL BE MS. MARIAM EGAL.
>>GOOD AFTERNOON, EVERYBODY.
THANK YOU SO MUCH FOR LETTING ME
COME HERE.
THANK YOU FOR INVITING ME TO
THIS MEETING.
SO, I'M HERE TODAY, YOU KNOW,
I'M ALONE WITH A 45-YEAR-OLD
WITH AN UNDIAGNOSED BEHAVIORAL
CONDITION, ALSO SOMALI.
AND I'M HERE TO BRING TO YOU
GUYS THE CHALLENGE, YOU KNOW,
THE RECOMMENDATIONS THAT HAVE
BEEN MADE AND PROBLEMS AND ALSO
I HAVE PREFERENCE
(INDISCERNIBLE) THAT CAN SHOW
YOU WHAT KNOWS THINGS ARE.
PARENTS SAID THEY WERE VERY MUCH
SUFFERING OF RACISM IN GETTING
SERVICES.
POVERTY, HOUSEHOLD FAMILIES'
LACK OF KNOWLEDGE OF EXISTING
SERVICES, SINGLE PARENT
HOUSEHOLD, LACK OF FUNDING FOR
GRASS ROOTS ORGANIZATIONS THAT
CAN PROVIDE CULTURAL SERVICE,
LACK OF SERVICES FOR LIKE MY
COLLEAGUE JUST MENTIONED, LACK
OF SERVICES FOR YOUNG AUTISTIC
YOUNG ADULTS THAT ARE OUT THERE,
AND NOTHING, POST-SECONDARY, NO
SERVICES.
UNDIAGNOSED NO SERVICES RUNNING
AROUND, NO SAFETY NET, HOUSING
ALSO POSES A GREAT PROBLEM FOR
THESE FAMILIES, SINCE THEY ARE
FAMILIES OF LARGE HOUSEHOLDS AND
THEY ARE BEING EVICTED ALL
AROUND.
UNDIAGNOSED MENTAL HEALTH ISSUES
THAT GOES AROUND UNTREATED,
PARENTS AND SIBLINGS TEND TO
MANAGE SIGNS OF DEPRESSION,
ANXIETY, CHRONIC DISEASES AND
OTHER RELATING ISSUES.
SO IT'S NOT ONLY AFFECTING THE
INDIVIDUAL WITH THE AUTISM BUT
IT'S ALSO AFFECTING THE WHOLE
FAMILIES.
SO FOR RECOMMENDATIONS,
RESOURCES AND FUNDING TARGETING
COMMUNITY-BASED GRASS ROOTS
ORGANIZATIONS OF PARENTS OF
INDIVIDUALS WITH AUTISM.
THESE ORGANIZATIONS TRY WITHOUT
FUNDS, DOING COMMUNITY
ENGAGEMENT ACTIVITIES IN A
CULTURAL AND LINGISTLY
APPROPRIATE MANAGE.
IT'S NOT A ONE-SIZE-FITS-ALL.
BE MINDFUL OF ALL CULTURALLY
APPROPRIATE COMMUNICATION
STRATEGIES, ORAL VERSUS WRITTEN,
ENGLISH VERSUS OTHER LANGUAGES.
AND THROUGH OTHER CHANNELS.
DIVERSIFY OUR WORK FORCE, BE
INCLUSIVE, INCENTIVIZE
SCHOLARSHIPS INCREASE AREA OF
MENTAL HEALTH AND BEHAVIOR
HEALTH FOR MINORITIES.
RESEARCH AND CAUSATION, WHY THE
HIGHER PREVALENCE IN THIS
COMMUNITY?
YOU KNOW, RESOURCES SO WE CAN
HAVE PREVENTIVE MEASURES TO
ADDRESS WHAT THE ISSUES ARE.
NOTHING IS HAPPENING.
THANK YOU SO MUCH FOR HAVING ME
TESTIFY.
>>THANK YOU SO MUCH, MS. EGAL,
FOR SHARING THOSE COMMENTS.
I'D LIKE TO REMIND EVERYONE YOU
CAN ACCESS THE WRITTEN
STATEMENTS THAT GO WITH THE ORAL
COMMENTS ON OUR WEBSITE, IF YOU
GO TO THE MEETING PAGE AND
SCROLL DOWN TO THE MEETING
MATERIALS, YOU'LL FIND THE THERE
AS WELL AS ALL OF OUR WRITTEN
ORAL COMMENTS THAT CAME IN THE
PUBLIC COMMENT PACKET.
SO FEEL FREE TO ACCESS THOSE.
NOW WE WILL BE MOVING TO THE
WRITTEN COMMENTS, IF I CAN HAVE
THE SLIDES.
WONDERFUL.
AND IF I CAN HAVE CONTROL OF THE
SLIDES AS WELL.
FIRST WE'RE GOING TO BE STARTING
ON THIS PAGE.
WE HAVE 38 WRITTEN PUBLIC
COMMENTS TOTAL THAT WERE
SUBMITTED.
AND WE WILL -- WE HAVE 28
COMMENTS ON THE TOPIC OF
RESEARCH AND SERVICE NEEDS,
RESOURCE, POLICY IMPLICATION,
AND NAMES OF COMMENTERS ARE
LISTED HERE.
WE ALSO RECEIVED FOUR COMMENTS
ON THE TOPIC OF RESEARCH
SERVICES AND SUPPORTS FOR ADULTS
ON THE AUTISM SPECTRUM.
AND TWO COMMENTS ON MENTAL
HEALTH RESEARCH SERVICES AND
TREATMENT.
IN ADDITION WE HAD ONE COMMENT
ON THE ROLE OF IACC AND THE
FEDERAL GOVERNMENT, ONE COMMENT
ON EMPLOYMENT, ONE COMMENT ON
THE INCLUSION OF AUTISTIC
PERSPECTIVES IN RESEARCH.
AND ONE COMMENT ABOUT CONCERN
ABOUT MEDICAL PRACTICES.
I BELIEVE THAT'S THE FULL LIST.
YES, THAT'S THE FULL LIST OF
WRITTEN PUBLIC COMMENTS AND
THOSE ARE IN YOUR PACKET.
SO NOW WE HAVE SOME TIME FOR
COMMITTEE DISCUSSION.
>>I'D LIKE TO INVITE MEMBERS OF
IACC TO GO AHEAD AND RAISE YOUR
HANDS AND I CAN CALL ON YOU.
AND THE FIRST THAT I SEE IS
PAUL.
>>THANKS, DR. GORDON.
THANKS, DR. DANIELS AS WELL.
I WANTED TO FOLLOW UP ON THE
ORAL COMMENTS THAT WE HEARD FROM
DR. ASATO AND DR. DAWSON, AND
THAT MR. BANKS TOUCHED ON AS
WELL, REGARDING THE PROPOSED
CHANGES IN THE REQUIREMENTS FOR
PEDIATRIC TRAINING.
TO BE BRIEF, I SHARE THEIR VERY
DEEP CONCERNS HERE THAT THESE
PROPOSED CHANGES ARE TERRIBLY
ILL ADVISED ON MULTIPLE FRONTS.
I'M GOING TO GO THROUGH THREE
POINTS IN THE PROPOSED CHANGES
THAT THEY TOUCHED.
FIRST OF ALL, IT IS PROPOSED TO
ELIMINATE REQUIREMENTS FOR,
QUOTE, ENSURING EXPOSURE TO THE
SPECTRUM OF NORMAL DEVELOPMENT
AT ALL AGES.
I SIMPLY CANNOT FATHOM WHY THIS
REQUIREMENT WOULD BE ELIMINATED.
IN SHORT, TO USE SLIGHTLY
DIFFERENT WORDS, THE SUGGESTION
IS THAT PEDIATRICIANS IN
TRAINING WOULD NOT HAVE TO HAVE
ADEQUATE UNDERSTANDING OF
SPECTRUM OF NEURODIVERSITY, THAT
FLIES IN THE FACE OF WORK WE
UNDERSTAND NOW TO BE SO VERY
IMPORTANT, PEDIATRICIANS REALLY
LEAD THE EVALUATION OF CHILDREN,
THEY ARE THE ONES CALLED UPON TO
HELP PARENTS WHEN A CHILD MIGHT
NEED ADDITIONAL SUPPORT, WHEN
BEHAVIORS ARE WITHIN THE
SPECTRUM, UNDERSTANDING STRENGTH
AND WEAKNESSES, PEDIATRICIANS
MUST GET THIS TRAINING, IT MAKES
NO SENSE TO ELIMINATE THE
REQUIREMENT FOR ADEQUATE
EXPOSURE TO SPECTRUM OF NORMAL
DEVELOPMENT.
IT'S PROPOSED THEY WOULD
ELIMINATE REQUIREMENT OF
EXPOSURE TO LONGITUDINAL
MANAGEMENT OF CHILDREN WITH
SPECIAL HEALTH CARE NEEDS AND
CHRONIC CONDITIONS.
AGAIN, IT IS SIMPLY IMPOSSIBLE
FOR ME TO FATHOM THE MOTIVATION
BEHIND THIS.
AS OTHERS HAVE SPOKEN TO, AND AS
WE SEE VERY BROADLY IN THE
MEDICAL COMMUNITY NOW THERE'S A
STRONG MOVEMENT THAT WE MUST
PROVIDE A MEDICAL HOME FOR EVERY
CHILD, THIS APPLIES BEYOND
PEDIATRICS OF COURSE BUT WE NEED
TO HAVE SOMEBODY WHO IS AT THE
CENTER COORDINATING MEDICAL CARE
FOR INDIVIDUALS, FOR CHILDREN
AND ESPECIALLY THOSE WITH
SPECIAL HEALTH CARE NEEDS.
AGAIN JUST MAKES NO SENSE TO
ELIMINATE THE REQUIREMENTS THAT
PEDIATRICIANS IN TRAINING GET
EXPOSURE TO THE LONGITUDINAL
MANAGEMENT OF THESE KINDS OF
ISSUES.
THERE'S PROPOSAL TO ELIMINATE
HAVING FACULTY MEMBER ON
TRAINING FACULTY CERTIFIED IN
DEVELOPMENTAL BEHAVIORAL
PEDIATRICS.
I'M BIASED BECAUSE I'M A
DEVELOPMENTAL BEHAVIORAL
PEDIATRICIAN, I RECEIVE NO
SALARY SUPPORT FOR TRAINING OF
PEDIATRIC RESIDENTS OR MED
STUDENTS OR ANYTHING LIKE THAT
BUT AS OTHERS POINTED OUT THESE
ARE CORE FACULTY -- THESE ARE
PEOPLE WHO WITHIN THE PEDIATRIC
SPECIALTY HAVE KNOWN CERTIFIED
IN THE EXPERTISE IN THE CARE OF
CHILDREN WITH AUTISM AND RELATED
CONDITIONS.
THERE ARE CERTAINLY CHILD
NEUROLOGISTS LIKE DR. ASATO,
CHILD PSYCHIATRISTS LIKE MY
COLLEAGUES DR. SIEGEL AND PIVEN,
WHO COULD PROVIDE THIS KIND OF
TRAINING TO PEDIATRICIANS BUT IN
FACT THE PROPOSED CHANGES DO NOT
MANDATE THAT YOU COULD
REPLACE -- HAVE A CHILD
PSYCHIATRIST OR CHILD
NEUROLOGIST WITH EXPERTISE, THEY
SIMPLY DROP THE REQUIREMENT.
NOT ACCEPTABLE.
AS THE POINT HAS BEEN MADE
RECENTLY IN PRINT THERE'S AN
EPIDEMIC OF NEED.
THIS IS A TERRIBLE TIME TO BE
WEAKENING THE TRAINING OF FUTURE
PEDIATRICIANS.
THE IACC HAS SPONSORED WORKSHOPS
ON CO-OCCURRING CONDITIONS
HIGHLIGHTING LACK OF MEDICAL
TRAINING RELATED TO AUTISM.
WE NEED TO DO NOW WHAT ACGME
NEEDS TO DO TO BOLSTER THE
TRAINING OF THE MEDICAL
WORKFORCE, NOT COMPROMISE IS.
>>THANK YOU, PAUL, FOR THE
COMMENTS.
DINA?
>>I JUST WANT TO, AGAIN,
REINFORCE WHAT ALL THE DOCTORS
BEFORE ME HAVE SAID.
I THINK IF IT'S POSSIBLE, MAYBE
WE COULD DISCUSS A STATEMENT
FROM THE IACC ABOUT THESE
POTENTIAL CHANGES.
I DON'T KNOW IF THAT'S POSSIBLE
BUT I WANTED TO FOCUS ON THE
COMMENTS RELATED TO ADULTS, AND
--
>>MAY I MAKE A SUGGESTION?
LET'S COME BACK TO THE COMMENTS
ON ADULTS, AND LET ME ASK -- I
PROMISE WE'LL COME BACK.
PUT YOUR HAND BACK UP SO I DON'T
FORGET.
BUT YOU SORT OF MADE A THOUGHT
THAT WE -- PROPOSITION WE AS
IACC COULD PROVIDE SOME FORM OF
RECOMMENDATION.
I'M GOING TO ASK EVERYONE WHO
WOULD LIKE TO COMMENT ON THAT
PARTICULAR THING TO TO RAISE
YOUR HAND AND HOLD OFF ON
RAISING HANDS FOR OTHER COMMENTS
FOR THE MOMENT.
LET ME JUST SAY WE'RE AN
ADVISORY -- GO AHEAD, DENA.
>>ON THAT TOPIC I WANT TO SAY
THIS IS THE OPPOSITE OF WHAT THE
AMERICAN DENTAL ASSOCIATION HAS
DONE.
THEY ARE MANDATING TRAINING WITH
PEOPLE WITH DEVELOPMENTAL
DISABILITY IN THEIR PROTOCOLS.
SO, THIS REALLY IS OPPOSITE OF
WHAT OTHER MEDICAL FIELDS HAVE
SEEN AS VALUABLE AND NECESSARY.
AND THEN I'M HOLD MY OTHER
THOUGHT.
>>GREAT.
WE'LL COME BACK FOR THAT.
AND MEANTIME I'M GOING TO GO TO
OTHER FOLKS.
BEFORE OTHER FOLKS I WANT TO
CLARIFY SOMETHING AND, SUSAN,
PLEASE JUMP IN IF I GET THIS
WRONG.
WE'RE AN ADVISORY BODY TO THE
SECRETARY FOR HEALTH AND HUMAN
SERVICES SO WE AS A COMMITTEE,
AGAIN SUSAN JUMP IF IN I'M
WRONG, CAN EXPRESS OUR CONCERN
AS A COMMITTEE TO THE SECRETARY
AND ASK THE SECRETARY TO TAKE
WHATEVER ACTION IN THIS CASE HE
DEEMS APPROPRIATE GIVEN OUR
CONCERNS.
AS A COMMITTEE WE CAN'T, AS A
COMMITTEE, PROVIDE A
RECOMMENDATION TO THE AMERICAN
ACADEMY OF PEDIATRICS, ACGME
FOLKS, AS INDIVIDUALS OR
ORGANIZATIONS ON THE COMMITTEE
YOU CAN PROVIDE THAT INPUT BUT
AS A COMMITTEE OUR INPUT SHOULD
GO TO THE SECRETARY.
>>THE COMMITTEE IS PERMITTED TO
MAKE A STATEMENT.
WE'VE MADE STATEMENTS BEFORE.
>>OKAY.
>>THE STATEMENT ON THE WEBSITE,
WE CAN SEND A LETTER THAT I
BELIEVE WE CAN SEND A LETTER.
>>OKAY.
>>COPY THE SECRETARY.
I CAN LOOK INTO WHETHER WE CAN
HAVE A LETTER TO THE ACTUAL
COMMITTEE BUT WE CAN MAKE A
STATEMENT ON THE WEBSITE AND
MAKE SURE IT GETS TO THE
COMMITTEE THAT NEEDS TO SEE IT.
>>OKAY.
SO I TAKE THAT BACK.
WE CAN, IF WE WISH THEN, MAKE A
STATEMENT.
BEFORE WE FORMULATE WHAT THAT
STATEMENT WOULD LOOK LIKE WHAT
I'M GOING TO ASK IS THERE'S A
BUNCH OF PEOPLE WHO RAISED THEIR
HANDS.
I'D LIKE -- WE CAN KEEP THIS
BRIEF UNLESS THERE'S
DISAGREEMENT.
SO SO FAR I'VE HEARD EXPRESSIONS
FROM TWO MEMBERS OF THE
COMMITTEE, THAT THEY WOULD LIKE
TO MAKE A STATEMENT AS A
COMMITTEE AGAINST THIS MOVE.
SO, IF YOU ARE GOING TO -- IF
YOU RAISED YOUR HAND BECAUSE YOU
WANT TO AGREE WITH PREVIOUS
SPEAKERS, SAY I AGREE OR IF
THERE'S A PERTINENT POINT OTHERS
HAVEN'T RAISED SAY THAT, BUT
BRIEFLY.
IF YOU HAVE AGAINST SAYING
SOMETHING AS A COMMITTEE, DO
EXPRESS REASONS WHY YOU MIGHT BE
AGAINST THAT MOVE.
YOU DO NOT HAVE TO AT THIS POINT
SAY ANYTHING IF YOU AGREE.
SO IF YOU JUST WANT TO SAY I
AGREE WE'LL TAKE A VOTE LATER ON
THIS, TO MAKE SURE WE'RE GETTING
EVERYTHING RIGHT, BUT IF YOU
WANT TO EXPRESS VERBALLY
SOMETHING ABOUT IT, RAISE YOUR
HAND NOW, EITHER PRO OR AGAINST,
BUT PLEASE TRY TO KEEP IT BRIEF
AND ONLY SAY SOMETHING THAT
HASN'T ALREADY BEEN SAID BEFORE.
WE'LL START WITH YETTA MYRICK.
>>I AGREE.
>>THANK YOU VERY MUCH.
DR. FLEES BERG?
>>I AGREE, DEFINITELY AN
IMPORTANT ISSUE FOR US TO
COMMENT ON.
>>OKAY.
JAYLIN?
>>I COME AT THIS DIFFERENTLY,
VERY MUCH IN FAVOR OF US MAKING
A STATEMENT, OVER THE LAST 30
YEARS WITH MY HUSBAND'S RESEARCH
WITH RSV WE'VE BEEN AROUND
NUMEROUS PEDIATRICIANS AND MANY
DIFFERENT LEVELS, ONE OF THE
MAJOR THINGS I SEE IS
PEDIATRICIANS ARE EDUCATORS.
THEY EDUCATE THE FAMILIES, THEY
EDUCATE TO KNOW WHAT CAN BE
EXPECTED, DEVELOPMENTAL
MILESTONES.
IF YOU DON'T KNOW WHAT THOSE
ARE, YOU CANNOT EDUCATE FAMILIES
AND INDIVIDUALS AS WELL AS LOOK
OUT FOR THE PATIENT.
SO WITH THE NUMEROUS PEOPLE THAT
WE'VE HAD THE OPPORTUNITY BEING
WITH AND AROUND ACROSS THE
COUNTRY WITH PEDIATRICIANS, I
WOULD SAY LET'S GIVE THEM AS
MUCH TRAINING AS WE POSSIBLY
CAN, AND IN FACT EVEN INCREASE
IT IF POSSIBLE IN MEDICAL
SCHOOLS.
THANK YOU.
>>THANK YOU, JALYNN.
LAUREN?
>>JUST WONDERING IF THERE'S AN
OPPORTUNITY FOR THE COMMITTEE TO
INTERACT WITH ACGME DIRECTLY TO
LEARN MORE ABOUT WHY THE
CHANGE
THAT MIGHT HELP US UNDERSTAND
WHY THE CHANGE AND OFFER
SUGGESTIONS IN ADDITION TO A
LETTER.
>>EXCELLENT POINT.
WE CAN FIGURE OUT HOW TO
INCORPORATE THAT INTO THE
STATEMENT WE WANT TO MAKE.
>>COMMENTS CALLED THE PROPOSAL
HORRIFYING AND SHE SAYS PLEASE
RAISE YOUR VOICES AND OPPOSE
THIS, DIRECTS PEOPLE TO DR.
DAWSON'S COMMENT ON THE IACC WEB
MAIN PAGE AND THE WEB PAGE.
>>AS INDIVIDUALS, ANY MAYBE AND
ANYONE CAN EXPRESS THEIR
OPINION.
IF YOU WANT TO KNOW HOW TO
EXPRESS THE OPINION TO THE
ORGANIZATION DIRECTLY, DO VISIT
THE WEBSITE MENTIONED IN THE
PUBLIC COMMENTS WHICH ARE POSTED
ON THE IACC WEBSITE ALREADY.
SCOTT, DID YOU WANT TO ADD
SOMETHING ELSE?
>>THANKS, DR. GORDON.
I WANT TO SAY I AGREE.
AND I WAS A PUBLIC MEMBER
PREVIOUSLY ON THE IACC BEFORE,
FEDERAL GOVERNMENT, YEARS AGO.
WE DID A STATEMENT YEARS AGO
RELATED TO I THINK ABOUT GUN
VIOLENCE AND HOW AUTISTIC PEOPLE
ARE MORE LIKELY TO HAVE
VICTIMIZATION THAN BE
PERPETRATORS SO THE COMMUNITY
HAS TO HAVE EXPERIENCE, I'D BE
HAPPY TO CONTRIBUTE TO THAT IF
FOLKS ARE IN CONCURMENT ABOUT
DOING A STATEMENT, IT WOULD BE
BENEFICIAL ESPECIALLY SINCE A
LOT OF FOLKS FEEL STRONGLY.
THANK YOU.
>>WHAT I'M HEARING IS
ENTHUSIASM FOR MAKING A
STATEMENT AS A COMMITTEE,
OBJECTING TO THE CHANGE, AND
ALSO I THINK IT WAS SUGGESTED TO
INVITE ACGME TO DISCUSS THE
CHANGE, A COUPLE THUMBS UP
COMING THROUGH.
>>DR. GORDON, WE HAVE A LIMITED
TIME TO RESPOND.
THEY MAY NOT BE ABLE TO DO THAT
WITH US.
>>ABSOLUTELY.
SINCE TOMORROW IS THE DAY THAT
THEY HAVE LIMITED FOR PUBLIC
COMMENT, BUT I DON'T KNOW IF
THAT MEANS THEY ARE GOING TO
MAKE THE CHANGE PRIOR.
WE CAN CERTAINLY FORMULATE THAT
SIMPLEST STATEMENT, AND SEND IT
TO THAT GROUP AS WELL AS PUSH IT
ON THE WEBSITE AND SEND IT TO
THE SECRETARY AS WELL.
LET ME JUST -- SORRY.
WAS THERE ANOTHER COMMENT SENT
IN VIA TEXT THAT WE NEED TO
READ?
>>CAMILLA MYSTERY HAD A
QUESTION, DO WE HAVE ANY IDEA ON
THE AAP, ASSOCIATION OF AMERICAN
PEDIATRICS, POSITION ON PROPOSED
CHANGES?
>>I DO NOT KNOW THAT.
DOES ANYONE KNOW THAT?
>>THIS IS PAUL.
I CAN REPORT THAT.
YES.
ONE OF THE AAPs SENIOR VICE
PRESIDENTS HAS EXPRESSED THEIR
OBJECTIONS TO THE ACGME
PROPOSAL.
>>OKAY.
AND A HAND IS RAISED AGAIN.
DO YOU HAVE ADDITIONAL STATEMENT
TO MAKE?
>>WANTED ME TO READ A LINK THEY
SENT OVER THE CHAT.
THEY SENT THE SOCIETY FOR
DEVELOPMENTAL BEHAVIORAL
PEDIATRICS LINK, SDDP.ORG,
ACGME-INFORMATION.
>>OKAY.
THANK YOU VERY MUCH.
ALL RIGHT.
SO I THINK WHAT I'D LIKE TO DO
IS SUGGEST THAT SUSAN AND HER
STAFF CAN WRITE A
STRAIGHTFORWARD STATEMENT THAT
THE COMMITTEE -- GIVEN THE
IMPORTANCE OF EDUCATING
PEDIATRICIANS AROUND ABOUT
AUTISM AND INDIVIDUALS IN THE
AUTISM SPECTRUM AND IMPORTANCE
OF PEDIATRICIANS LEARNING
APPROPRIATELY THE CARE FOR SUCH
INDIVIDUALS, WE OBJECT TO THESE
CHANGES, AND THAT WE INVITE
MEMBERS OF THE ACGME GROUP
CONTEMPLATING CHANGES TO MEET
WITH US AT OUR NEXT MEETING.
SUSAN, DO YOU THINK CAN YOU
HANDLE DRAFTING?
>>YES, AND REACH OUT TO MEMBERS
THAT MAY BE ABLE TO HELP WITH
THAT AND ONCE WE HAVE A DRAFT WE
CAN CIRCULATE IT AND WE CAN
EITHER VOTE ON IT BY E-MAIL OR
HAVE AN EXTRA MEETING.
>>I WOULD SAY LET'S VOTE RIGHT
NOW, JUST STATEMENT WITH THE
UNDERSTAND YOU WILL RECEIVE A
DRAFT OF THE STATEMENT.
WE NEED TO DO THIS FAST.
WHAT'S A GOOD TIME THEY CAN
EXPECT THE E-MAIL FOR THE
STATEMENT BY?
WE WANT TO GET IT DONE TOMORROW.
>>YOU NEED TO SUBMIT FOR PUBLIC
COMMENT TOMORROW?
>>NO, NO -- YES.
THAT'S WHAT I MEAN.
>>I'M NOT SURE IF WE WOULD MAKE
THE DEADLINE.
WE CAN TRY TO, BUT --
>> WHAT TIME IS THE DEADLINE?
>>WELL, IT'S TOMORROW.
>>ALL RIGHT.
SO LET'S AGREE ON WORDING RIGHT
NOW.
SO, I'M GOING TO GO AHEAD AND
TYPE SOMETHING INTO THE TEXT,
THE COMMENT LINE, I'LL JUST SAY
IT OUT LOUD.
INTERAGENCY AUTISM COORDINATING
COMMITTEE OBJECTS TO THE
PROPOSED CHANGES IN ACGME
REQUIREMENTS FOR THE INCLUSION
OF AN EXPERT -- SORRY, PAUL,
WHAT IS THE EXACT NATURE OF THE
REQUIREMENT, INCLUSION OF
EXPERT?
>>THEY ARE DROPPING REQUIREMENT
FOSSA BOARD CERTIFIED
DEVELOPMENTAL BEHAVIORAL
PEDIATRICIAN ON THE --
>>HOLD ON.
OF A BOARD CERTIFIED
DEVELOPMENTAL BEHAVIORALLIST.
ALL RIGHT.
>>YES.
>>BEHAVIORAL PEDIATRICIAN.
>>ON THE RESIDENCY FACULTY.
>>ON THE RESIDENCY FACULTY FOR
PEDIATRIC RESIDENCIES.
>>YES.
>>OKAY.
I'M GOING TO SAY STRONGLY
OBJECTS TO THE PROPOSED CHANGES
IN ACGME REQUIREMENTS FOR
INCLUSION OF BOARD CERTIFIED
DEVELOPMENTAL PEDIATRICIAN ON
THE RESIDENCY FACULTY FOR
PEDIATRIC RESIDENCIES.
WE URGE THE ACGME NOT TO ADOPT
THIS CHANGE.
WE INVITE REPRESENTATIVES OF THE
ACGME TO MEET WITH THE IACC AT A
FUTURE MEETING.
ALL RIGHT.
SO VERY SIMPLE.
>>IF I MAY, DR. GORDON, THERES
A SECOND CHANGE WHICH I
MENTIONED, THEY ARE DROPPING
REQUIREMENTS FOR EXPOSURE TO
SPECTRUM OF NORMAL DEVELOPMENT
AND LONGITUDINAL MANAGEMENT OF
CHILDREN WITH SPECIAL HEALTH
CARE NEEDS.
>>OKAY.
WE FURTHER OBJECT TO DROPPING
REQUIREMENT.
>>STRIKING, YEAH.
>>YOU KNOW WHAT?
GO AHEAD.
>>FOR EXPOSURE TO SPECTRUM OF
NORMAL DEVELOPMENT AT ALL AGE
LEVELS AND THE LONGITUDINAL
MANAGEMENT OF CHILDREN WITH
SPECIAL HEALTH CARE NEEDS.
>>LONGITUDINAL -- OF CHILDREN
WITH, SORRY, SAY IT AGAIN.
>>WITH SPECIAL HEALTH CARE
NEEDS.
ALICE, DID YOU WANT TO SAY
SOMETHING?
>>YES.
THANK YOU.
FIRST I WANT TO SAY I APPRECIATE
YOUR BEING THIS NIMBLE TO MAKE
THIS STATEMENT ABOUT SUCH AN
IMPORTANT ISSUE.
AND THEN I JUST WANT TO SAY I
THINK WE SHOULD FLIP THEM
BECAUSE I THINK THE ISSUE IS
TRAINING AND SHORT-TERM GETTING
RID OF DEVELOPMENTAL BEHAVIORAL
PEDIATRICIANSES IS GOING TO
DECIMATE THIS KIND OF TRAINING.
FOR ME PERSONALLY IF THERE ARE
OTHER PEOPLE WHO CAN DO THIS, I
DON'T HAVE A PROBLEM WITH THAT.
BUT RIGHT NOW IT'S A TERRIBLE
IDEA.
>>OKAY.
SO, WHAT YOU'RE SUGGESTING IS WE
JUST SWAP THE TWO.
NOW WOULD SO COORDINATING
COMMITTEE STRONGLY OBJECTS TO
DROPPING REQUIREMENTS FOR
EXPOSURE TO SPECTRUM OF NORMAL
DEVELOPMENT AT ALL AGES AND
LONGITUDINAL MANAGEMENT OF
CHILDREN WITH SPECIAL HEALTH
CARE NEEDS.
PERIOD.
WE FURTHER OBJECT TO DROPPING
REQUIREMENTS FOR INCLUSION OF A
BOARD CERTIFIED DEVELOPMENTAL
BEHAVIORAL PEDIATRICIAN ON THE
RESIDENCY AND FACULTY FOR
PEDIATRIC RESIDENCIES.
WE URGE THE ACGME NOT TO ADOPT
THESE CHANGES.
WE INVITE REPRESENTATIVES OF THE
ACGME TO MEET WITH THE IACC AT A
FUTURE MEETING.
I APOLOGIZE IN ADVANCE TO
MEMBERS, WE'RE DOING THIS VERY,
VERY QUICKLY, THERE ARE MEMBERS
OF THIS COMMITTEE WHO MAY NOT BE
ABLE TO PROCESS THIS QUICKLY
ENOUGH, ASSUMING WE HAVE AN
OVERWHELMINGLY POSITIVE VOTE
WE'LL MOVE FORWARD WITH THIS.
IF THE VOTE IS CLOSE WE MAY NEED
TO TAKE A PAUSE AND MAKE SURE WE
E-MAIL THE LANGUAGE OUT TO
EVERYONE SO EVERYONE GETS TO
CONSIDER IT.
DUE TO THE URGENCY OF GETTING
THIS INTO THE HANDS OF THE ACGME
BEFORE THE CLOSE OF PUBLIC
COMMENT PERIOD I'D LIKE TO VOTE
ON THIS TODAY REGARDLESS OF THE
FACT I KNOW SOME OF YOU WILL NOT
HAVE THE OPPORTUNITY TO FULLY
PROCESS THE LANGUAGE THAT WE'RE
ABOUT TO GIVE.
>>SORRY, SUSAN RIVERA.
I WANT TO MAKE ONE QUICK
SUGGESTION.
IT GOES TO THE LAST COMMENT.
COULD YOU IN THE CHAT JUST COPY
AND PASTE WHAT WE ARE VOTING ON?
SO WE CAN TAKE A QUICK LOOK AND
DO THE VOTE.
>>I'M GOING TO TRY TO DO THAT.
WE'RE NOT SUPPOSED TO BE USING
THE CHAT FOR THAT FUNCTION.
>>CAN YOU SHARE A SCREEN AND
SHOW US?
>>THAT'S A GREAT IDEA.
I THINK I CAN DO THAT.
>>THANK YOU, SUSAN.
>>YOU BET.
>>GREAT IDEA.
I'M JUST GOING TO COPY AND PASTE
THIS STUFF INTO WORD AND THEN I
WILL SHARE THE SCREEN.
I'LL MAKE SURE WE GET THE
LANGUAGE RIGHT.
I WANT TO MAKE SURE AS MANY
PEOPLE ARE ON BOARD AS POSSIBLE.
I THINK THAT'S A GREAT
SUGGESTION.
GIVE ME A MOMENT.
WHILE I DO THIS, WHY DON'T WE
MOVE ON.
AND TO THE NEXT COMMENT THAT
DENA WAS GOING TO MAKE.
I'M GOING TO FOCUS ON GETTING
THE LANGUAGE RIGHT.
WE'LL COME BACK TO IT AFTER
DENA'S COMMENT.
IS THAT OKAY, SUSAN?
>>YEAH, SOUNDS GREAT.
THANK YOU.
>>OKAY.
>>DR. GORDON, THANK YOU SO MUCH
FOR YOUR QUICK ACTION ON THIS.
I'M ACTUALLY EMOTIONAL THAT
WE'RE TAKING SUCH A FIRM STANCE.
I JUST WANT TO GO BACK TO SOME
OF THE TALK TODAY ABOUT ADULT
ISSUES.
WHEN I WAS WORKING WITH JOHN TO
DRAFT COMMENTARY RESPONSE TO THE
NEW RATES, I WAS TAKING A HARD
LOOK AT RESEARCH GLOBALLY IN
TERMS OF ADULT OUTCOMES.
AND I JUST WANT TO MAKE A
STATEMENT THAT WE HAVE FAILED.
WE HAVE FAILED OUR COMMUNITY.
OUR FOCUS ON EMPLOYMENT AS THE
END-ALL, BE-ALL, OUR SUGGESTION
THAT SOCIAL SECURITY PROVIDES
PEOPLE A HIGH QUALITY OF LIFE,
OUR SUGGESTIONS PEOPLE DIAGNOSED
LATE NOT DISABLED, IT'S NOT IN
THE LITERATURE.
THE REALITY OF IT IS IF YOU
WEREN'T A DIAGNOSIS OF AUDIENCE
WHEREVER YOU LAND ON THE
SPECTRUM THIS INCLUDES INHERENT
FUNCTIONAL LIMITATIONS.
AND SO WHY WE TEND TO APPROACH
CHALLENGES IN THE WORKPLACE,
WE'RE FAILING TO RECOGNIZE THAT
THERE'S NO MECHANISM TO UNPACK
YEARS AND YEARS OF TRAUMA THAT
ENSUED FROM LACK OF DIAGNOSIS,
THERE'S NO MECHANISM IN OUR
THERAPEUTIC MODELS TO HELP
PEOPLE WITH FUNCTIONAL DAILY
INDEPENDENT LIVING SKILLS THAT
WERE NEVER TAUGHT BECAUSE THEY
WERE ON A DIPLOMA TRACK, AS IF
THEIR INTELLECT COULD SUDDENLY
OVERRIDE THIS OTHER IMPAIRED
PART OF THEIR NEUROLOGY.
AND SO I WOULD LIKE TO SEE IF WE
CAN'T SET ASIDE TIME OR SPACE TO
HAVE AN IN-DEPTH CONVERSATION O
SHIFTING TRAJECTORY TO VARYING
ASPECTS OF AUTISM WE'VE ALMOST
BEEN SHAMED ABOUT TALKING ABOUT.
IF WE HAVE HAVE HIGHER I.Q.s WE
SUPPOSED TO BE ABLE TO JUG AL
WORKEL A EL A -- JUGGLE A WORK/E
BALANCE.
MANY STATES DON'T EMPLOY
SERVICES FOR PEOPLE WHOSE
DIAGNOSIS DOESN'T MANIFEST
BEFORE 21 OR 25, THAT MEANS THAT
PEOPLE ARE LEFT INDIGENT,
UNHOUSED, WITH INCONSISTENT
HOUSING, LEFT WITHOUT MENTAL
HEALTH SERVICES THAT ARE
APPROPRIATE TO THIS POPULATION.
SO, GIVEN THE PUBLIC COMMENTS
THAT CONTINUE TO FLOW IN ABOUT
THE GAPS IN ADULT SERVICES, I
WOULD REALLY LOVE FOR US TO LOOK
AT THE SERVICE DELIVERY MODELS
AND LOOK AT THE RESEARCH ON
THESE OUTCOMES AS A CUMULATIVE
SET OF EVIDENCE TO REFRAME
OUTCOMES IN PRIORITIES.
>>THANK YOU.
WE'LL LOOK AT NEW OPPORTUNITIES,
WE MIGHT BE ABLE TO DO THAT.
EXCELLENT SUGGESTION.
>>THANK YOU.
>>AND DO WE HAVE ANOTHER
COMMENT?
>>YEAH, THEY JUST SENT ME A
COMMENT, THEY ALSO LET ME KNOW
THEY E-MAILED ACGME TO ASK FOR
EXTENDED DEADLINE AS AN
ACCOMMODATION.
THE COMMENT THEY SHARED HERE
SAYS THERE'S A WRITTEN COMMENT
RELATED TO SUBMINIMUM WAGE THEY
WANT TO ADDRESS, AS A CHILD WITH
INTELLECTUAL DISABILITY, THEY
WANT TO EMPHASIZE WITH WHAT
PARENTS SHARED ABOUT HOW THERE'S
MORE BENEFIT WORKING THAT
INCOME, SENSE OF RESPONSIBILITY,
JOY, SELF-ACTUALIZATION,
SUBMINIMUM WAGE IS UNACCEPTABLE,
IF IS ISN'T ABOUT THE MONEY WE
SHOULD DEVELOP MORE SERVICE TO
INTERNSHIPS, APPRENTICESHIPS, WE
PRESCEPTORSHIPS, ET CETERA.
>>THANK YOU.
AND I'LL HAVE ONE LAST COMMENT,
AND FROM IVANOVA AND RETURN TO
EARLIER ISSUE.
>>THIS IS IVANOVA SMITH.
THANK YOU TO THOSE WHO
COMMENTED.
I WANTED TO COMMENT ABOUT THE
DOCTORS FOR TRAINING, IT'S VERY
IMPORTANT IN THAT TRAINING THAT
THE DOCTORS ARE EDUCATED ON
HARMS OF MENTAL THEORY.
PEOPLE WITH INTELLECTUAL
DISABILITIES GROW UP LIKE ANYONE
ELSE, AND WE HAVE THE RIGHT TO
HAVE A SUPPORT INTO ADULTHOOD
AND NOT BE RESTRICTED IN OUR
ADULT LIFE SO I ENCOURAGE ALL
DOCTORS TO NOT USE MENTAL AGE
THEORY TO DESCRIBE A PERSON WITH
INTELLECTUAL DISABILITIES
BECAUSE POLICY-WISE IT CAUSES A
LOT OF HARM AND FOR PEOPLE WITH
IDD IT TEACHES US WE'RE NOT
ALLOWED TO GROW UP.
AND THEN WE GET -- WE DON'T --
WE'RE NOT ALLOWED TO LIVE A FULL
ADULT LIFE.
AND EVERYBODY SHOULD BE ABLE TO
LIVE A FULL ADULT LIFE.
THAT'S WHAT I WANTED TO SAY.
THANK YOU TO EVERYONE WHO HAS
COMMENTED.
>>THANK YOU.
SCOTT, CAN YOU MAKE YOUR COMMENT
BRIEF?
>>YEAH, OR I CAN -- CAN WE COME
BACK TO TALKING ABOUT THE OTHER
PUBLIC COMMENTS AFTER YOU GO FOR
THIS STATEMENT, ARE WE GOING TO
RUN OUT OF TIME?
>>WE'RE ALREADY OVER TIME.
>>I'LL BE BRIEF THEN.
I WANTED TO SAY THAT I
APPRECIATE THE EMPHASIS AND
ORAL-WRITTEN COMMENTS ON
AUGMENTED ALTERNATIVE
COMMUNICATION ACCESS FOR FOLKS.
WE SHOULD FOCUS MORE ON THAT.
AND THEN ALSO ON THE EMPLOYMENT
AND THERE WERE GREAT -- THERE
WAS GREAT EMPHASIS ON EMPLOYMENT
IN THE PUBLIC COMMENTS BUT I
WANTED TO HIGHLIGHT ONE THAT'S
MENTIONED, SPECIFICALLY A LARGE
PERCENTAGE OF AUTISTIC ADULTS
ARE UNEMPLOYED OR CHRONICALLY IN
A STATE OF BURNOUT, FIGHT OR
FLIGHT, DUE TO LACK OF
ACCOMODATIONS, UNDERSTANDING,
LARGELY LIVING IN NEUROTYPICALLY
BASED WORLD, IMPORTANT AS WE
ENHANCE ACCESS TO BETTER QUALITY
OF LIFE.
I APPRECIATE COMMENTS SHARED
LIKE THIS.
IT'S VALUABLE FOR US AS FAR AS
THE INPUT.
THANKS.
>>THANK YOU VERY MUCH.
WE'LL CLOSE OUR DISCUSSION ON
PUBLIC COMMENTS, WE'LL RETURN,
HOWEVER, TO THE SUGGESTION THAT
WE PROVIDE A STATEMENT TO THE
ACGME AND I WOULD SAY WE WOULD
ALSO SUPPLY THIS STATEMENT TO
THE SECRETARY AND ON THE
WEBSITE.
THIS IS THE STATEMENT I DRAFTED.
AND INCORPORATED YOUR COMMENTS.
I'M GOING TO READ IT TO YOU AS
WELL.
IT SHOULD BE VISIBLE ON YOUR
SCREENS.
LET ME TRY TO INCREASE THE FONT
TO MAKE SURE EVERYONE HAS THE
BEST CHANCE OF READING IT.
DOES THAT WORK?
THE INTERAGENCY AUTISM
COORDINATING COMMITTEE STRONGLY
OBJECTS TO THE PROPOSED CHANGES
IN ACGME REQUIREMENTS.
OOPS.
IN THE ACGME REQUIREMENT FOR
EXPOSURE TO SPECTRUM OF NORMAL
DEVELOPMENT AT ALL AGES AND
LONGITUDINAL MANAGEMENT OF
CHILDREN WITH SPECIAL HEALTH
CARE NEEDS.
WE FURTHER OBJECT TO DROPPING
THE REQUIREMENT FOR INCLUSION OF
A BOARD CERTIFIED DEVELOPMENTAL
BEHAVIORAL PEDIATRICIAN ON THE
RESIDENCY FACULTY FOR PEDIATRIC
RESIDENCIES.
WE URGE THE ACGME NOT TO ADOPT
THESE CHANGES.
WE INVITE REPRESENTATIVES OF THE
ACGME TO MEET WITH THE IACC AT A
FUTURE MEETING TO DISCUSS THIS
IMPORTANT MATTER.
REALIZING WE NEED TO MAKE ONE
MORE CHANGE, I WILL READ IT ALL
AGAIN.
I MOVE THIS FOR PEDIATRIC
RESIDENCIES UP.
I'LL READ IT AGAIN.
AND THEN I'LL TAKE COMMENTS ON
THIS, IF THERE ARE OTHER MINOR
SUGGESTED CHANGES.
WE DON'T HAVE A LOT OF TIME TO
REWRITE IT.
INTERAGENCY AUTISM COORDINATING
COMMITTEE STRONGLY OBJECTS TO
THE PROPOSED CHANGES IN THE
ACGME REQUIREMENT FOR EXPOSURE
TO THE SPECTRUM OF NORMAL
DEVELOPMENT AT ALL AGES AND THE
LONGITUDINAL MANAGEMENT OF
CHILDREN WITH SPECIAL HEALTHCARE
NEEDS FOR PEDIATRIC RESIDENCIES.
WE FURTHER OBJECT TO DROPPING
REQUIREMENT FOR INCLUSION OF A
BOARD CERTIFIED DEVELOPMENTAL
BEHAVIORAL PEDIATRICIAN ON THE
RESIDENCY FACULTY.
WE URGE THE ACGME NOT TO ADOPT
THESE CHANGES.
WE INVITE REPRESENTATIVES OF THE
ACGME TO MEET WITH THE IACC AT A
FUTURE MEETING TO DISCUSS THIS
IMPORTANT MATTER.
DENA, DO YOU HAVE A SUGGESTION?
>>A SMALL ONE.
I APOLOGIZE, MY HOLLYWOOD
SQUARES DON'T WORK FOR ME.
THE COMMENT THAT WAS MADE
EARLIER ABOUT THE ROLE OF THESE
PEDIATRICIANS IN LIVES OF THE
FAMILIES, ANY ELEMENT OF THAT IN
TERMS OF LIKE THE JUSTIFICATION,
THE "SO WHAT" QUESTION MIGHT BE
HELPFUL.
>>YOU'RE RIGHT.
I'M GOING TO HOLD OFF.
LET ME TAKE JOSEPH'S COMMENT
FIRST.
PERHAPS JOE HAS SUGGESTION FOR
LANGUAGE.
>>VERY MINOR.
WE'RE ASSUMING THEY WILL KNOW
WHAT THE IACC IS, MAYBE AN
INTRODUCTORY SENTENCE THAT IT'S
A FEDERAL PANEL OR ADVISORY
PANEL, SOMETHING TO ORIENT THEM.
>>THANK YOU.
>>WE'LL ADD THAT UNDERNEATH
THE -- I'LL PUT AN ASTERISK
HERE.
WE'LL ADD IT AS A FOOTNOTE
BELOW.
SOUND GOOD?
>>WE COULD INTRODUCE IT WITH
EXPLAINING WHAT THE COMMITTEE IS
BEFORE WE MAKE THE
RECOMMENDATION.
>>OKAY.
MARENEKA?
ANOTHER COMMENT?
>>VERY OFTEN ADULTS HAVE
REMAINED WITH PEDIATRICIANS
UNTIL THEY ARE IN THEIR
MID-20s.
AND SO THIS GOES FOR VERY LONG
TIME BECAUSE THERE AREN'T PEOPLE
ON THE OTHER SIDE QUALIFIED AND
READY TO HANDLE MANY ISSUES
IDENTIFIED EARLIER.
IF THAT PLAYS INTO IT.
>>THANK YOU, JALYNN.
WAS THERE A COMMENT THAT NEEDS
TO BE READ.
>>YES, THERE'S MANY TEMPLATES
TO GO FROM ON THE SDDP.ORG
WEBSITE FOR ORGANIZATIONS,
PARENTS, PEDIATRICIANS.
DR. SCOTT ROBERTSON MENTIONED
BOARD CERTIFIED NEEDS A HIGH BEN
BETWEEN BOARD AND CERTIFIED AND
IF WE CAN MENTION HOW THE IACC
HELPS SUPPORT THE AUTISM CARES
ACT.
>>WILL THAT BE IN YOUR
EXPLANATION, SUSAN, THAT WE
SUPPORT THE AUTISM CARES ACT?
>>WE HAVE SOME STANDARD
LANGUAGE WHAT THE COMMITTEE IS.
>>I'M GOING TO ADD A QUESTION
OF JUSTIFICATION.
PLEASE JUMP IN IF SOMEONE HAS A
BETTER WAY OF EXPRESSING IT.
>>THERE IS A MANUAL THAT DOES
NEED TO BE --
>>DRAMATICALLY AND ADVERSELY
AFFECT THE ABILITY OF
PEDIATRICIANS TO CARE FOR
INDIVIDUALS ON THE AUTISM
SPECTRUM, AND TO EDUCATE
PATIENTS AND FAMILIES.
AFFECTED BY AUTISM.
ANY OTHER SUGGESTIONS FOR THAT
SENTENCE?
>>CAN WE SAY EQUITABLY CARE
FOR?
>>SURE.
EQUITABLY.
>>THANK YOU.
>>IT'S NOT ONLY EQUITABLY, AND
EFFECTIVELY.
>>YES.
THANK YOU.
>>SOUND GOOD?
>>AMAZING.
I'M SO HAPPY YOU'RE DOING THIS.
>>OKAY.
SO NOW IT DOESN'T FIT ON ONE
PAGE.
YES, IS THERE ANOTHER COMMENT?
>>YOU TYPED EDUCATION INSTEAD
OF EDUCATE.
>>THANK YOU.
>>JOSH.
>>PLEASE GO AHEAD.
>>YEAH, IT'S LARRY WEXLER.
GIVEN THE IACC IS SUPPOSED TO BE
DRIVEN BY RESEARCH, WHAT WE'RE
SAYING I THINK HAS COMMON SENSE
TO IT.
BUT I WOULD ASK THE QUESTION OF
PEOPLE WHO KNOW MUCH MORE ABOUT
THE TRAINING OF PEDIATRICIANS
THAN I DO.
IS THERE ANY RESEARCH EVEN AT
THE DESCRIPTIVE LEVEL THAT
DEMONSTRATES THAT HAVING A BOARD
CERTIFIED DEVELOPMENTAL
BEHAVIORAL PEDIATRICIAN ON
FACULTY HAS A POSITIVE EFFECT?
BECAUSE I'M HOPING THAT THERE IS
SOMETHING OUT THERE, BECAUSE
STATING THAT, THAT WHAT WOULD
THAT BASED ON RESEARCH WE KNOW
THIS, I THINK WOULD MAKE THE
OVERALL STATEMENT MUCH MORE
POWERFUL.
I HAVE NO OBJECTION TO THE
STATEMENT.
LIKE I SAID, COMMON SENSE IS NOT
--
>>RIGHT.
YOU'RE ASKING THE QUESTION, CAN
WE HONESTLY ARGUE FOR THAT
SECOND SENTENCE, THAT THIS WAS
AN EVIDENCE-BASED APPROACH.
I DO NOT KNOW OF ANY RESEARCH IN
THAT AREA.
DOES ANYONE ON THE COMMITTEE
KNOW OF ANY SPECIFIC RESEARCH TO
SUPPORT THAT STATEMENT?
>>THERE CANNOT BE ANY
CONTROLLED RESEARCH ON THAT
BECAUSE BEFORE THERE WERE
DEVELOPMENTAL BEHAVIORAL
PEDIATRICIANS IT WAS NOT
REQUIRED.
ACGME ADDED, SO ANY COMPARISON
WOULD BE CONFOUNDED BY THE
CHANGE, IF YOU WILL.
>>PAUL, I GUESS I WAS -- I'M
SURE YOU'RE RIGHT.
I WAS JUST LOOKING IS THERE EVEN
ANECDOTAL RESEARCH IN PLACE.
>>YEAH, I WOULDN'T BE
COMFORTABLE ADDING RESEARCH
SUPPORTS STATEMENT WITHOUT
SOMETHING A LITTLE BIT MORE THAN
ANECDOTAL.
>>MY PUBLIC'S PARTNER DOING
RESEARCH ON RSV WAS CHIEF
PEDIATRICIAN OF THE AIR FORCE
AND ALSO THE HEAD OF THE
UNIFORMED SERVICES.
>>JALYNN, I'M GOING TO
INTERRUPT BECAUSE WE'RE RUNNING
LATE NOW.
>>WOULD A STATEMENT FROM HIM BE
HELPFUL?
>>AT THIS POINT I DON'T THINK
WE CAN ADD ANYTHING TO THIS
GIVEN THAT WE WANT TO GET IT OUT
TOMORROW.
IF THE COMMITTEE WANTED TO
INVESTIGATE --
>>I CAN GET HIM ON THE PHONE
RIGHT NOW.
>>I DON'T THINK THAT WOULD BE
HELPFUL AT THIS POINT.
HE'S NOT A MEMBER OF THE
COMMITTEE.
I APPRECIATE THAT THOUGHT.
WHAT I'D LIKE TO DO NOW IS ASK
IF SOMEONE MIGHT MOVE THAT WE
SEND THIS STATEMENT THAT WE'VE
DRAFTED TO THE ACGME AND COPY
THE SECRETARY, DO I HAVE A
MOTION?
THANK YOU.
A SECOND?
>>SECOND.
>>OKAY.
LET ME ASK EVERYONE IN FAVOR TO
RAISE THEIR HANDS ON THE ZOOM
CALL.
USING THE ZOOM.
IF YOU'RE UNABLE PLEASE
E-MAIL -- PLEASE, SORRY, TEXT
THE -- SEND COMMENTS IN THE CHAT
OR OTHERWISE UNMUTE AND SAY THAT
YOU'RE -- LOOKS LIKE EVERYONE IS
ABLE TO RAISE THEIR HANDS.
DO WE HAVE A FULL COUNT YET?
>>25 PARTICIPANTS THAT RAISED
THEIR HAND ACCORDING TO WHAT I
WAS ABLE TO SEE.
>>THANK YOU.
WOULD EVERYONE NOW LOWER THEIR
HANDS.
>>I WAS TOO SLOW IN RAISING MY
HAND.
>>WE'LL MAKE IT 26.
THANK YOU, IVANOVA.
ALICE, LOWER YOUR HAND.
NOW EVERYONE AGAINST SENDING
THIS STATEMENT AS WRITTEN PLEASE
RAISE YOUR HAND.
OR SO STATE VERBALLY.
I SEE NO HANDS RAISED, NO ONE IS
VERBALLY STATING THEY ARE
AGAINST.
WOULD ANYONE LIKE TO ABSTAIN
FROM THIS VOTE, ANYONE WHO WANTS
TO ABSTAIN FROM VOTING ON
SENDING THIS STATEMENT PLEASE
RAISE YOUR HAND OR SO INDICATE
VERBALLY.
WE HAVE ONE ABSTENTION.
TWO ABSTENTIONS.
THREE ABSTENTIONS.
ANY OTHERS?
OKAY.
YOU MAY LOWER YOUR HANDS.
25 FOR, NO AGAINST, 3
ABSTENTIONS, MAYBE 4
ABSTENTIONS, ONE CAME IN LATE.
WAS THAT YOUR INTENT, JODY?
>>YES.
>>OKAY.
THANK YOU, FOUR ABSTENTIONS.
MOTION PASSES.
WE WILL INCLUDE AN EXPLANATION
OF WHAT THE IACC IS IN THIS AND
SUBMIT TO THE ACGME FOR COMMENT
AS WELL AS SEND A COPY OF THIS
FROM THE IACC TO THE SECRETARY
AND POST THE STATEMENT ON THE
WEBSITE.
THANK YOU VERY MUCH, EVERYONE.
I THINK THAT WAS A WONDERFUL WAY
TO RESPOND APPROPRIATELY TO
PUBLIC COMMENTS THIS WAY.
WITH THAT I'M GOING TO AGAIN
TURN THE MEETING OVER TO SUSAN.
I HAVE TO RESUME TAKING CARE OF
THE FAMILY EMERGENCY, AND WISH
YOU ALL A VERY INFORMATIVE AND
ENJOYABLE REST OF THE MEETING.
BYE-BYE.
>>THANK YOU.
WE WERE SCHEDULED TO TAKE A
BREAK, AND -- WE WERE SCHEDULED
TO TAKE A BREAK BUT WE'RE BEHIND
TIME SO I'M GOING TO PROPOSE WE
JUST START THE NEXT PANEL AND IF
ANYONE NEEDS TO TAKE A QUICK
BREAK JUST TAKE THAT QUICK BREAK
AND WE'LL RETURN.
I WILL HAND OVER TO SHELLI TO
PROVIDE THE WELCOME BUT I'M ALL
EXCITED ABOUT THIS PANEL AND
LOOKING FORWARD TO HEARING ALL
THESE PRESENTATIONS.
>>GREAT.
THANKS, SUSAN.
THANKS, EVERYONE, FOR YOUR
ACTIVE PARTICIPATION IN THE LAST
SESSION.
MOVING RIGHT ALONG I WANT TO
INTRODUCE OUR NEXT SET OF
PRESENTATIONS AND PRESENTERS.
THIS SET OF PRESENTATIONS WILL
FOCUS ON THE TOPIC OF RACIAL
DISPARITIES AND RACIAL EQUITY
AND AUTISM OUTCOME.
FEDERAL GOVERNMENT IS COMMITTED
TO REDUCE DISPARITIES AND REDUCE
EQUITY, THE IACC HAS ALREADY
IDENTIFIED THIS AREA IN THE
UPCOMING IACC STRATEGIC PLAN AS
AN IMPORTANT PRIORITY FOR FUTURE
ACTIVITIES.
WE WILL HAVE TWO RESEARCH
PRESENTATIONS, AND WE'LL HEAR
FROM PERSPECTIVES FROM THE
COMMUNITY ABOUT LIVED
EXPERIENCE, WE'LL HAVE TIME FOR
QUESTIONS AND DISCUSSIONS FROM
IACC MEMBERS.
DR. BRIAN BOYD, WILLIAM C.
FRIDAY PROFESSORRED IN
INDICATION, INTERIM DIRECTOR OF
THE FRANK PORTER GRAHAM CHILD
DEVELOPMENT INSTITUTE,
UNIVERSITY OF NORTH CAROLINA AT
CHAPEL HILL.
AS WELL AS DR. JILL LOCKE,
ASSOCIATE PROFESSOR OF
PSYCHIATRY AND BEHAVIORAL
SCIENCES AT THE UNIVERSITY OF
WASHINGTON.
THANK YOU AND WELCOME TO BOTH OF
YOU.
>>THANK YOU.
JILL AND I ARE HAPPY TO
VIRTUALLY ENGAGE YOU IN THIS
CONVERSATION TODAY ABOUT
UNDERSTANDING THE IMPACT OF
RACISM AND DISCRIMINATION IN
AUTISM RESEARCH.
WE'RE GOING TO TAG TEAM BUT I'M
GOING TO START TODAY.
I WANT TO THANK SUSAN DANIELS
AND OTHER MEMBERS OF THE IACC
FOR ORGANIZING THIS DISCUSSION.
IT'S IMPORTANT TO ACKNOWLEDGE
THAT AUTISTIC PEOPLE HAVE
MULTIPLE CULTURAL IDENTITIES
THAT THEY ARE NAVIGATING.
SUCH AS BEING BLACK AND AUTISTIC
CAN AFFECT OUTCOMES BECAUSE OF
LARGER SOCIETAL ISSUES LIKE
ABLEISM AND RACISM.
RACISM HAS PUBLIC HEALTH
CONSEQUENCES.
I WANT TO READ A STATEMENT FROM
THE CDC WEBSITE.
DATA SHOW RACIAL AND ETHNIC
MINORITY GROUPS THROUGHOUT THE
UNITED STATES EXPERIENCE HIGHER
RATES OF ILLNESS AND DEATH
ACROSS A WIDE RANGE OF HEALTH
CONDITIONS, INCLUDING DIABETES,
HYPERTENSION, OBESITY, ASTHMA,
HEART DISEASE.
WHEN COMPARED TO THEIR WHITE
COUNTERPARTS.
THIS STATEMENT GOES ON TO SAY TO
BUILD A HEALTHIER AMERICA FOR
ALL, WE MUST CONFRONT SYSTEMS
AND POLICIES THAT RESULTED IN
GENERATIONAL INJUSTICE GIVING
RISE TO INEQUITIES, AND
SOMETHING WE MUST DO TO ASSURE
BEING ABLE TO THRIVE.
NEXT SLIDE PLEASE.
REALLY THIS PRESENTATION IS SORT
OF ORGANIZED INTO FOUR PARTS OR
SECTIONS, THE FIRST PART I'M
GOING TO TAKE IS TO PROVIDE SOME
CONTEXT FOR TODAY'S
PRESENTATIONS.
I'M GOING TO START BY DISCUSSING
SOME RELEVANT TERMS AND HOW
RACISM OPERATES IN U.S. SOCIETY.
THEN JILL IS GOING TO WALK US
THROUGH EXAMPLES OF RACISM'S
IMPACT ON AUTISTIC PEOPLE OF
COLOR AND WHAT WE'RE LEARNING
FROM SOME RESEARCH THAT'S
HAPPENING IN THE SPACE RIGHT NOW
IN THE FIELD AND WE'LL DISCUSS
SOME COMMUNITY PARTNER
SOLUTIONS, THERE ARE COMMUNITY
GROUPS DOING WONDERFUL THINGS,
FINDING WAYS TO ADVOCATE ON
BEHALF OF MARGINALIZED GROUPS.
WE'RE GOING TO TALK ABOUT SOME
OF THOSE SOLUTIONS AND DISCUSS
NEXT STEPS AND FUTURE
DIRECTIONS.
NEXT SLIDE PLEASE.
MANY PEOPLE HAVE LIKELY SEEN
SOME VERSION OF THIS GRAPHIC.
TWO CENTER FIGURES CONTRAST THE
DIFFERENCE BETWEEN EQUALITY AND
EQUITY.
QUALITY BEING EVERYONE GETS
ACCESS TO THE SAME GOODS,
SERVICES, RESOURCES.
EQUITY BEING THAT PEOPLE GET
ACCESS TO WHAT THEY NEED WHICH
ACKNOWLEDGES NOT EVERYONE NEEDS
THE SAME THING.
SO EQUITY BRINGS IN THE CONCEPT
OF FAIRNESS.
THE IMAGE ON THE LEFT REMINDS US
THAT IN REALITY SOME PEOPLE
START OFF
[AUDIO DISTORTION]
WITH WAY LESS.
SO WE'RE NOT STARTING AT A PLACE
OF EQUALITY.
OPPORTUNITY GAPS ALREADY EXIST
IN SOCIETY, IN PARTICULAR ALONG
RACIAL AND ETHNIC LINES.
ON THE FAR RIGHT ASKS US TO
CONSIDER HOW WE FREE ALL GROUPS
FROM OPPRESSION AND
MARGINALIZATION, IMPLORES US TO
ASK THE QUESTION WHY DID SOMEONE
ERECT THE FENCE IN THE FIRST
PLACE?
NEXT SLIDE PLEASE.
SO, I START BY DEFINING SOME
TERMS.
I'M BORROWING FROM THE WORK OF
DR. KAMARA JONES, PICTURED ON
THE SCREEN.
THIS IS TO MAKE SURE WE'RE ALL
ON THE SAME PAGE HOW WE THINK
ABOUT SOME OF THESE TERMS.
IF WE THINK ABOUT
INSTITUTIONALIZED RACISM IT'S
DEFINED AS THE STRUCTURES,
POLICIES, PRACTICES, NORMS THAT
RESULT IN DIFFERENTIAL ACCESS TO
GOODS, ASKS SERVICES,
EXPERIENCES IN SOCIETY BECAUSE
OF RACE.
WE KNOW THAT INSTITUTIONAL
STRUCTURAL RACISM IS EMBEDDED IN
LARGER SOCIAL, POLITICAL,
ECONOMIC SYSTEMS THAT PEOPLE OF
COLOR HAVE TO NAVIGATE.
EXAMPLES OF INSTITUTIONALIZED
STRUCTURAL RACISM ON THE NEXT
FEW SLIDES.
CULTURAL RACISM IS IDEOLOGY
GROUNDED IN SUPERIORITY OF ONE
GROUP ANOTHER, USUALLY
SUPERIORITY OF WHITE PEOPLE AND
INFERIORITY OF THOSE NON-WHITE.
AND IT'S OFTEN DEEPLY EMBEDDED
IN LANGUAGE, SYMBOLS, MEDIA, AND
JUST GENERAL ASSUMPTIONS ABOUT
PEOPLE OF COLOR WE MAKE IN
SOCIETY.
INTERRACISM IS A DISCRIMINATORY
EXPERIENCES THAT ETHNIC
MINORITIES FACE EVERY DAY SUCH
AS MICROAGGRESSION, AND CAN
CONTRIBUTE TO INTERNAL RACE
INCH.
WE KNOW BLACK PEOPLE'S
ACCEPTANCE OF WHITE SUPERIORITY
IS ASSOCIATED WITH LOWER
SELF-ESTEEM AND HIGHER LEVELS OF
DEPRESSIVE SYMPTOMS AND OBESITY.
NEXT SLIDE PLEASE.
A GOOD FRIEND AT THE UNIVERSITY
OF NORTH CAROLINA, CHAPEL HILL,
A SOCIAL PSYCHOLOGIST, KEITH
PAYNE, PUBLISHED A PAPER IN
2019.
IN THAT PAPER HE WAS LOOKING AT
THE RELATIONSHIP BETWEEN THE
NUMBER OF SLAVES IN STATES IN
1860 AND STARTED WITH 1860, THE
FIRST YEAR THE U.S. CENSUS
STARTED TO DOCUMENT THE NUMBER
OF SLAVES IN SLAVE-HOLDING
STATES.
LOOKING AT THE ASSOCIATION
BETWEEN NUMBER OF SLAVES AND
PRESENT DAY LEVELS OF IMPLICIT
BIAS.
YOU CAN SEE DARKER COLORS MEAN
MORE SLAVES, THERE'S ALREADY
SOME OVERLAP WITH DARKER COLORS
ON THE MAP OF THE UNITED STATES
AT THE BOTTOM THERE, WHERE
DARKER COLORS MEAN HIGHER LEVELS
OF IMPLICIT RACIAL BIASES IN
THOSE SAME STATES.
NEXT SLIDE PLEASE.
WHAT KEITH FOUND WAS A
RELATIONSHIP BETWEEN NUMBER OF
SLAVES IN 1860 AND PRESENT DAY
LEVELS OF IMPLICIT RACIAL BIAS.
WHAT HE ALSO FOUND, AND HIS
GROUP, THAT ASSOCIATION WAS
MEDIATED BY WHAT WE THINK OF AS
FORMS OF SYSTEM IS RACISM.
SO, THOSE STATES ALSO TENDED TO
HAVE HIGHER LEVELS OF
RESIDENTIAL SEGREGATION, MORE
DISPARITY IN POVERTY,
PARTICULARLY IN NUMBER OF BLACK
PEOPLE IN CONCENTRATED POVERTY,
MORE DISPARITY IN UPWARD
MOBILITY, ABILITY OF PEOPLE IN
POVERTY TO CLIMB OUT OF POVERTY.
SO WE CAN THINK ABOUT THOSE
THINGS AS REMNANTS OFTEN OF
SLAVERY, SUBSEQUENT JIM CROW
LAWS LIKE RED LINING AFFECTING
ABILITY OF PEOPLE TO GET BANK
LOANS, TO BUY HOMES.
ALL OF THOSE PRODUCTS OF SYSTEM
IS RACISM CONTRIBUTE TO MODERN
DAY LEVELS OF IMPLICIT RACIAL
BIAS.
WE CAN SEE HOW -- THE HISTORY,
SOCIOHISTORICAL CONTEXT IS
CONTRIBUTING TO CURRENT FORMS OF
DISCRIMINATION, AND IMPLICIT
RACIAL BIASES OPERATING IN
TODAY'S SOCIETY.
NEXT SLIDE PLEASE.
THIS IS ONE EXAMPLE.
IT'S A LOT ON THIS SCREEN.
BUT THAT WAS PUBLISHED AROUND
HOW STRUCTURAL RACISM COULD BE
OPERATING IN PEDIATRIC HEALTH
CARE.
I WON'T WALK YOU THROUGH THE
WHOLE THING BUT YOU CAN SEE THEY
DOCUMENT SOME FORMS OF
STRUCTURAL RACISM, SUCH AS
RESIDENTIAL SEGREGATION OR
SCHOOL SEGREGATION AND HOW THAT
CAN CONTRIBUTE OR AFFECT
ENVIRONMENTS IN WHICH PEOPLE
LIVE.
SAFETY OF NEIGHBORHOODS,
EDUCATIONAL ACCESS, THOSE THINGS
LEAD TO -- CONTRIBUTE TO
INTERPERSONAL RACISM, IMPLICIT
AS WELL AS EXPLICIT, AND ALL OF
THESE THINGS REALLY THEN BEGIN
TO IMPACT OUTCOMES.
THE QUALITY OF RELATIONSHIPS
THAT ARE HAPPENING AND ONE MAY
HAVE WITH HEALTH CARE PROVIDER,
OR WITH TEACHER IN SCHOOLS.
AND THAT THESE FURTHER
CONTRIBUTE TO ALL KINDS OF
DISPARITIES THAT WE SEE ON THE
RIGHT, IN TERMS OF OUTCOMES FOR
PEOPLE.
AND THERE'S OFTEN
INTERGENERATIONAL TRANSMISSION
OF THESE ISSUES, AS I SAID,
ABILITY OF PEOPLE TO CLIMB OUT
OF POVERTY IS THEN IMPACTED BY
SOME STRUCTURAL REMNANTS OF
RACISM OPERATING IN OUR SOCIETY.
NEXT SLIDE PLEASE.
SO AS A BASIC EXAMPLE, THIS IS
ACTUALLY PRE-PANDEMIC DATA.
WE KNOW THE PANDEMIC EXACERBATED
THE DISPARITIES IN MANY WAYS.
ONE OF THE THINGS WE KNOW WITHIN
THE U.S. SOCIETY IS THAT THERE
IS INTERACTION BETWEEN RACE AND
COST.
PEOPLE OF COLOR WHO ARE BLACK,
LATIN A OR INDIGENOUS MORE
LIKELY TO LIVE IN LOWER INCOME
HOUSEHOLDS.
ONE WAY WE TALK ABOUT THIS, IT'S
CONCENTRATED OR COMPOUNDED
DISADVANTAGE, IF YOU ARE A POOR
RACIAL/ETHNIC MINORITY YOU ALSO
ARE MORE LIKELY TO LIVE IN
SEGREGATED HOUSING, MORE LIKELY
TO ATTEND MORE QUALITY SCHOOLS
BECAUSE OF HOW SCHOOLS ARE
FUNDED WITHIN U.S. SOCIETY,
OFTEN BASED IN LARGE PART BASED
ON TAXPAYER, PROPERTY TAXPAYERS,
COMPOUNDING DISADVANTAGE,
AFFECTING RESOURCES AVAILABLE TO
THAT PARTICULAR NEIGHBORHOOD.
SO, WE OFTEN THINK ABOUT THESE
THINGS AS CONCENTRATED OR
COMPOUNDED DISADVANTAGE THAT
GROUPS ARE FACING, THAT REALLY,
AGAIN, ARE THE REMNANTS OF A
RACIALIZED SOCIETY WE'RE LIVING
IN.
NEXT SLIDE PLEASE.
SO THE QUESTION WE BEGIN TO ASK,
HOW DOES RACISM AND
DISCRIMINATION IMPACT AUTISTIC
PEOPLE OF COLOR?
NEXT SLIDE PLEASE.
EARLIER DISCUSSION WAS
PREVALENCE DATA, THAT WE'RE
SEEING, PREVALENCE LOWER AMONG
WHITE CHILDREN THAN OTHER
GROUPS.
SO IT'S A GOOD THING WE'RE
BEGINNING TO IDENTIFY MORE
RACIAL AND ETHNIC MINORITY
CHILDREN BUT WHAT ASKING MORE
QUESTIONS TO HELP US BETTER
UNDERSTAND THE EXPERIENCES OF
RACIAL AND ETHNIC AUTISTIC
FAMILIES, ASKING QUESTIONS HOW
THEY ARE IMPACTING COMMUNITIES
AND OUTCOMES.
WE SHOULDN'T STOP WITH
IDENTIFICATION.
NEXT TO UNDERSTAND WHAT THEIR
LIVES ARE LIKE TO REALLY BEGIN
TO THINK ABOUT THESE QUESTIONS.
AND WE ALSO STILL SEE IN THE CDC
DATA THAT RACIAL AND ETHNIC
DISPARITIES EXIST SUCH AS BLACK
CHILDREN WITH ASD MORE LIKELY
THAN WHITE CHILDREN TO HAVE A
CO-OCCURRING INTELLECTUAL
DISABILITY PULLED FROM THE CDC
WEBSITE.
THE NEW NUMBERS SHOULD REALLY
PUSH US FORWARD WITH ASKING SOME
IMPORTANT QUESTIONS.
NEXT SLIDE PLEASE.
SO THIS IS JUST A BRIEF VIDEO
I'VE SHOWN BEFORE BUT IT'S A
BLACK MOTHER OF AUTISTIC SON
TALKING ABOUT HER EXPERIENCE WHY
WE SHOULD ASK SOME QUESTIONS
AROUND RACISM AND
DISCRIMINATION.
IF YOU COULD PLAY THE VIDEO.
>>I COULD START WHAT IT MEANS
TO BE A BLACK MOTHER, PERIOD.
SO, FOR US AS PARENTS, THERE IS
ALWAYS AN ANXIETY, I LIKE TO SAY
THAT THE FEELINGS, MEMORY,
SPIRIT OF HISTORICAL TRAUMA AND
STORY OF EMMITT TILL LIES WITHIN
OUR WOMB, OUR SOUL IN THE BLACK
COMMUNITY, FEAR OF A BLACK
MOTHER.
I MEAN, I ALWAYS SAY BLACK FOLKS
ARE NOT ALLOWED TO BE
UNAPOLOGETICALLY THEMSELVES.
THEY ARE NOT PERMITTED TO BE
NEURODIVERSE.
AND WE KNOW THIS ON A LOT OF
LEVELS.
MY BIGGEST FEAR IS IF AN OFFICER
APPROACHES MY CHILD, AND MY
CHILD BEGINS TO STEM, HAVE TO
PUT HIS HANDS IN HIS POCKETS TO
TAKE OUT ONE OF THE THINGS HE
LIKES TO HOLD ON TO TO HELP WITH
ANXIETY, ONE OF HIS TRINKETS OR
THINGS HE HOLDS ONTO AND REACHES
INTO THAT POCKET TO PULL IT OUT,
TO CALM HIMSELF, WHAT'S GOING TO
HAPPEN TO MY SON?
>>I THINK THOSE ARE THE KINDS
OF QUESTIONS WE NEED TO BE
ASKING AND ANSWERING.
WHAT'S GOING TO HAPPEN TO HER
SON IN THAT SITUATION?
BECAUSE HE IS A BLACK AUTISTIC
MAN.
NEXT SLIDE PLEASE.
>>TODAY I GET THE OPPORTUNITY
TO TALK ABOUT THE RACIAL AND
ETHNIC DISPARITIES THAT ARE
APPARENT IN AUTISM RESEARCH.
THERE'S GOING TO BE SOME
ANIMATION.
WE'LL PRESENT SEVERAL EXAMPLES
TODAY THAT TOUCH ON DIFFERENT
DOMAINS ACROSS THE LIFESPAN, BUT
THIS IS NOT AN EXHAUSTIVE LIST
BY ANY MEANS.
I WANT TO START WITH THE
DOCUMENTED DISPARITIES AND
DIAGNOSIS.
I THANK WENDY STONE FOR SHARING
THIS SLIDE.
WHAT SHE EXPLAINED IN HER
DIAGNOSTIC WORK IS THAT PARENTS
TYPICALLY EXPRESS CONCERNS IN
DEVELOPMENT ABOUT THEIR CHILDREN
AROUND 18 MONTHS, PERHAPS THIS
IS WHEN CHILD IS NOT
CONSISTENTLY RESPONDING TO NAME
OR INFREQUENTLY MAKING EYE
CONTACT WHICH HAS CULTURAL
UNDERTONES, OR ISN'T
COMMUNICATING IN THE WAY PARENTS
EXPECT.
SO THEY BEGIN TO SUSPECT THAT
SOMETHING MAY BE DIFFERENT ABOUT
THEIR CHILD'S DEVELOPMENT AND GO
TO THE PEDIATRICIAN'S OFFICE,
THE PEDIATRICIAN TELLS THE
PARENTS TO LET'S WAIT AND SEE
WHAT HAPPENS.
AVERAGE MOST CHILDREN DON'T
RECEIVE AUTISM DIAGNOSIS UNTIL
ABOUT AGES 3 OR 4, AND SOME
RECENT RESEARCH SUGGESTS CLOSER
TO AGE 4.
HOWEVER, ON AVERAGE, CHILDREN
FROM RACIAL/ETHNIC BACKGROUNDS
RECEIVE AT 5 OR 6, SOMETIMES
CLOSER TO 8.
THERE'S A GAP OF AUTISM
DIAGNOSIS FOR EVERYONE, THAT GAP
IS WIDER FROM CHILDREN FROM
RACIAL AND ETHNIC MINORITY
BACKGROUND.
WE KNOW THERE'S A LONG WAITING
PERIOD FOR DIAGNOSIS,
DIAGNOSTICS ACROSS THE BOARD BUT
IF YOU THINK ABOUT IT, ON
AVERAGE, A CHILD HAS TO WAIT
MOST OF THEIR LIFE TO GET AN
AUTISM CLASSIFICATION OR
DIAGNOSIS.
THAT'S REALLY UNACCEPTABLE IF
YOU THINK ABOUT WHAT SURFACES
GET LAYERED ON TOP OF THAT --
SERVICES GET LAYERED ON TOP OF
THAT.
EARLY INTERVENTION SERVICES
OFFERED FROM 0 TO 3, SOME STATES
UP TO 5, A CRITICALLY IMPORTANT
TIME FOR BRAIN PLASTICITY AND
GROWTH.
CHILDREN GETTING THAT DIAGNOSIS
LATER, THEY ARE MISSING THAT
WINDOW FOR EARLY INTERVENTION
SERVICES, AND THAT'S A CRITICAL
PERIOD WE KNOW CAN HELP IMPROVE
OUTCOMES.
NEXT SLIDE.
SO ONCE CHILDREN GET AN AUTISM
DIAGNOSIS AND ENTER SCHOOL, WE
SEE SOME RACIAL AND ETHNIC
DISPARITIES IN THE SCHOOL SYSTEM
IN TERMS OF CLASSROOM PLACEMENT.
WHAT THIS SLIDE IS SHOWING US,
BLACK STUDENTS REGARDLESS OF
DIAGNOSIS ARE AT HIGHER RISK
BEING PLACED IN SELF-CONTAINED
SETTING OR SPECIAL DAY CLASS,
AND MORE SPECIFICALLY BLACK
AUTISTIC STUDENTS HAVE HIGHER
RISK OF BEING PLACED IN
SELF-CONTAINED SETTING OR
SPECIAL DAY CLASS, REGARDLESS OF
THEIR FREE AND REDUCED PRICE
LUNCH STATUS, ON TOP, ADDING ON
NOTICING THAT THERE ARE SOME
DISPARITIES IN WHERE STUDENTS
ARE ACCESSING THEIR EDUCATION.
NEXT SLIDE.
AND WHEN YOU THINK FURTHER ABOUT
SOME OF THE SOCIAL RELATIONSHIPS
THAT EXIST IN SCHOOL SETTINGS WE
ALSO SEE SOME OF THOSE RACIAL
AND ETHNIC DISPARITIES.
SO IN THE LOWER ELEMENTARY
SCHOOL GRADES, K-2, WE SEE
NEUROTYPICAL BLACK CHILDREN
RECEIVE THE HIGHEST NUMBER OF
FRIENDSHIP NOMINATIONS.
HOLLY, CLICK THE OTHER
ANIMATIONS.
THANK YOU.
AND SO WE SEE THAT BLACK KIDS
WITH HIGHER NUMBER OF FRIENDSHIP
NOMINATIONS BUT THAT NUMBER GOES
DOWN IN BLACK AUTISTIC CHILDREN
IN UPPER ELEMENTARY GRADES,
DECLINES DRAMATICALLY, EVEN
THOUGH THAT'S THE GROUP WITH THE
MOST NOMINATION IN YOUNGER
GRADE.
IF YOU CLICK ONE MORE TIME.
OF INTEREST WE SEE NEUROTYPICAL
LATIN CHILDREN THE ONLY GROUP
FRIENDSHIP NOMINATIONS INCREASE
FROM LOWER TO UPPER ELEMENTARY
SCHOOL GRADES, BUT EXPERIENCE
GREATEST DECLINE IN NUMBER OF
FRIENDSHIP NOMINATIONS FROM
YOUNGER TO OLDER GRADES.
THESE ARE ALL PEER NOMINATIONS
THAT DO NOT COME FROM RESEARCH
TEAM, CAME FROM THE CHILDREN
THEMSELVES.
BOTTOM GRAPH SHOWS ALL AUTISTIC
CHILDREN WITH EXCEPTION OF ASIAN
AUTISTIC CHILDREN IN GRADES K-2
WERE LESS INTEGRATED IN
CLASSROOM SOCIAL NETWORK THAN
NEUROTYPICAL WHITE CHILDREN IN
GRADES K-2, WE'RE SEEING
DISPARITIES IN SOCIAL
RELATIONSHIPS AS WELL.
NEXT SLIDE.
THESE ARE DEMOGRAPHIC DATA
ACROSS 20 YEARS OF SCHOOL-BASED
RESEARCH WITH OVER 400 AUTISTIC
YOUTH, 349 TEACHERS, 266 PARA
EDUCATORS, FOUR STATES.
WE LAN PRELIMINARY ANALYSIS TO
UNDERSTAND WHO PARTICIPATE IN
SCHOOL-BASED RESEARCH.
THAT SAMPLE IS PREDOMINANTLY
WHITE.
IF YOU THINK BIT SCHOOL-BASED
RESEARCH IS INTENDED TO REACH
MORE AUTISTIC YOUTH IN THEIR
NATURAL SERVICE SETTINGS, AND
NUMBERS LOOK SLIGHTLY BETTER
THAN UNIVERSITY-BASED OR CLINIC
SETTINGS BUT WE SEE MORE WHITE
AUTISTIC YOUTH IN ACCESSING
RESEARCH BASED SERVICES IN
SCHOOLS.
WHAT'S EVEN MORE STRIKING IS THE
PERCENTAGE OF WHITE TEACHERS,
FAR OUTNUMBERS ALL OTHER RACIAL
AND ETHNIC CATEGORIES.
WE'RE ASKING TEACHERS TO BE
SUPPORT PROVIDERS AND THERE'S A
GREATER LIKELY HOOD OF
INTERVENTION SUCCESS AND
OUTCOMES WHEN THERE'S
CONCORDANCE BETWEEN THE
PROVIDERS AND THEIR CLIENTS.
SO TO SAY THAT DIFFERENTLY,
THERE MAY BE GREATER SUCCESS IF
THE RACE AND ETHNICITY OF
TEACHER MATCHES THAT OF THE
AUTISTIC CHILD BUT WE'RE SEEING
A PREDOMINANTLY OVERWHELMINGLY
WHITE SAMPLE OF TEACHERS.
NEXT SLIDE.
ON A BROADER POLICY SCALE WHEN
WE LOOK AT FEDERAL DOLLARS SPENT
OR APPROPRIATED, WE SEE THE
STATES WITH LARGER SHARES OF
CHILDREN ELIGIBLE FOR SPECIAL
EDUCATION RECEIVE ON AVERAGE
FEWER DOLLARS PER CHILD THAN
OTHER STATES WITH LESS NEED.
IN ADDITION, LARGE STATES AND
STATES WITH MORE CHILDREN
EXPERIENCING POVERTY ALSO
RECEIVE FEWER IDEA DOLLARS PER
CHILD.
STATES THAT LIKELY NEED AS MUCH
OR MORE FUNDING TO MEET HIGHER
LEVELS THAN OTHER STATES ON
AVERAGE GET FEWER FEDERAL
SPECIAL EDUCATION DOLLARS FOR
EACH CHILD WHO RECEIVES SPECIAL
EDUCATION SERVICES.
I WANT TO BE SURE I THANK DAVID
MENDEL FOR THIS SLIDE.
HE WAS UNABLE TO BE HERE TODAY.
WHEN WE LOOK AT AUTISTIC ADULTS,
WE ALSO SEE RACIAL/ETHNIC
DISPARITIES.
I'LL WALK US THROUGH.
AUTISTIC ADULTS MAY HAVE SEVERAL
CO-OCCURRING CONDITIONS
DELIVERING BY RACE AND ETHNIC
GROUP.
COMPARED TO THE GENERAL MEDICAID
POPULATION, AUTISTIC ADULT
MEDICAID BENEFICIARIES HAVE
ELEVATED ODDS OF SOME HEALTH
CONDITIONS LIKE EPILEPSY,
NUTRITION CONDITIONS, SOME
PSYCHIATRIC CONDITIONS SUCH AS
ANXIETY, ATTENTION DISORDERS.
THEY ALSO FOUND MANY OF THE SAME
HEALTH DISPARITIES BY RACIAL AND
ETHNIC GROUPS IN THE GENERAL
POPULATION PERSIST AMONG
AUTISTIC ADULT MEDICAID
POPULATION AS WELL.
FOR EXAMPLE, BLACK, HISPANIC,
ASIANED MEDICAID BENEFICIARIES
HAVE HIGHER ODDS OF DIABETES,
BLAND AND HISPANIC BENEFICIARIES
HAVE HIGHER OBESITY AND
NUTRITION CONDITIONS THAN WHITE
BENEFICIARIES.
WE'RE SEEING THIS ACROSS AGE
GROUPS, ACROSS POPULATIONS,
ACROSS RACIAL AND ETHNIC GROUPS
AS WELL.
NEXT SLIDE.
s THE FINAL EXAMPLE, THIS IS
JUST A SMATTERING OF LITERATURE
THAT'S OUT THERE, LOOKING AT
RACIAL AND ETHNIC DISPARITIES,
BY AMBER DAVIS AND COLLEAGUES.
THEY SURVEYED AUTISTIC BLACK AN
NON-AUTISTIC BLACK YOUNG ADULTS
TO UNDERSTAND HOW
INTERSECTIONALITY BETWEEN
IDENTITY OF RACE AND DISABILITY
LOOK LIKE.
AND THEY FOUND THAT AUTISTIC
BLACK PARTICIPANTS REPORTED
FEWER EVERYDAY DISCRIMINATORY
EXPERIENCES THAN NON-AUTISTIC
BLACK PARTICIPANTS.
BUT STRESS OR PERCEIVED STRESS
WAS NOT DIFFERENT.
BOTH EXPERIENCE HIGH LEVELS OF
STRESS.
MOST OF THE NON-AUTISTIC BLACK
PARTICIPANTS LISTED RACE AS
THEIR PRIMARY SOURCE OF
DISCRIMINATION EXPERIENCES,
WHEREAS AUTISTIC BLACK
PARTICIPANTS ARE CITING BOTH,
BEING AUTISTIC AS A MAJOR
CONTRIBUTOR, AS WELL AS THEIR
RACE.
AND SO IT'S REALLY IMPORTANT FOR
US TO UNDERSTAND
INTERSECTIONALITY BETWEEN RACE
AND ETHNICITY AS WELL AS
DISABILITY AND IDENTITY.
NEXT SLIDE.
WHILE WE ONLY PROVIDE A SNAPSHOT
OF THE RESEARCH HIGHLIGHTING
RACIAL AND ETHNIC DISPARITIES IN
AUTISM RESEARCH, THE TAKEHOME
MESSAGE IS THIS.
RACIAL AND ETHNIC DISPARITIES
PERMEATE ALL LEVELS.
WE SEE THESE DISPARITIES IN
AUTISTIC CHILDREN, AUTISTIC
ADULTS, IN DIFFERENT SETTINGS
LIKE CLINICS, HOSPITALS,
SCHOOLS, AND EVEN IN FEDERAL LAW
AND POLICY.
AND SO WE CAN AND WE NEED TO DO
BETTER.
NEXT SLIDE.
>>IF WE SUM UP A LITTLE BIT,
WHAT WE KNOW IS STRUCTURAL
INEQUITIES LEAD TO DIFFERENCES
IN BASICALLY THREE AREAS.
DIFFERENCES IN ACCESS TO GOODS,
SERVICES, AND RESOURCES.
DIFFERENTIAL OUTCOMES BY RACE
AND ETHNICITY.
AND DIFFERENTIAL EXPERIENCES
THAT ARE OFTEN INFERIOR IN
QUALITY, SO IF YOU TAKE THAT ONE
STUDY JILL LOOKED AT, THAT BLACK
AUTISTIC STUDENTS MORE LIKELY TO
BE IN CERTAIN SETTINGS,
DIFFERENT SCHOOL EXPERIENCES ARE
HAPPENING FOR THEM.
NEXT SLIDE PLEASE.
SO JUST ONE EXAMPLE HERE, SARAH
AND COLLEAGUES TAKING FROM DR.
MAGAÑA'S WORK, MANUALIZED
PROGRAM FOR BLACK PARENTS OF
AUTISTIC CHILDREN AND REALLY
APPLIED WHAT'S CALLED A SHARP
FRAMEWORK TO ADAPT THIS
INTERVENTION, IT'S A PARENT
ADVOCACY INTERVENTION.
THE SHARP FRAMEWORK HAD THEM
THINK ABOUT STRUCTURAL
OPPRESSION THIS GROUP HAS BEEN
FACING, HISTORICAL CONTEXT OF
COMMUNITY, WHY BLACK PARENTS MAY
COME TO RESEARCH WITH MISTRUST
BECAUSE OF HISTORICAL ISSUES
THAT HAVE HAPPENED TO THE BLACK
COMMUNITY AND PARTICIPATION IN
RESEARCH, REALLY HAS THE
RESEARCHER TAKE INTO ACCOUNT
PROVIDER'S ROLE, IS THE PROVIDER
THERE TO MAINTAIN OR HELP
DISRUPT THE STATUS QUO, AND
RECIPROCITY IN RELATIONSHIP
BETWEEN PROVIDER AND CLIENT, NOT
JUST UNDERSTANDING POWER
DYNAMICS OF THE RELATIONSHIP
BETWEEN THE PROVIDER AND CLIENT
BUT MORE SO WORKING TO SUPPORT
THE CLIENT'S POWER AND ABILITY
TO ENGAGE IN ADVOCACY AND WORK
TO CHANGE THEIR CURRENT
CIRCUMSTANCES.
HEALTH EQUITY IS THE STATE IN
WHICH EVERYONE HAS OPPORTUNITY.
AND RACIAL EQUITY IS DEFINED AS
A PROCESS OF ELIMINATING RACIAL
DISPARITIES AND IMPROVING
OUTCOMES FOR EVERYONE.
IT IS THE INTENTIONAL AND
CONTINUAL PRACTICE OF CHANGING
POLICIES, PRACTICES, SYSTEMS,
AND STRUCTURES BY PRIORITIZING
MEASURABLE CHANGE IN THE LIVES
OF PEOPLE OF COLOR.
THEY ARE NOT SYNONYMOUS.
IF WE THINK ABOUT OUTCOMES WHAT
ARE WE TALKING ABOUT?
IT'S GOOD TO HAVE WORKING
DEFINITIONS, TO ACHIEVE HEALTH
EQUITY FOR ALL AND RACIAL EQUITY
AS WELL FOR AUTISTIC PEOPLE OF
COLOR.
NEXT SLIDE PLEASE.
>>ONE POTENTIAL PATHWAY IS TO
THINK ABOUT AND DEVELOP PROGRAMS
FROM THE GROUND UP, AS OPPOSED
TO TRADITIONAL METHODS OF
RESEARCH TESTING ENGINE THROUGH
CLINICAL TRIALS WHICH MAY END UP
OR NOT IMPLEMENTED IN
UNDERSERVED COMMUNITIES,
IMPORTANT FOR US TO THINK AND
SUPPORT COMMUNITIES AND
DEVELOPMENT OF INHERENTLY
CULTURALLY GROUNDED
INTERVENTIONS, AND ONE WAY IS TO
STUDY PRACTICE-BASED
INTERVENTIONS AS THEY MIGHT BE
MORE FEASIBLY IMPLEMENTED IN
EVERYDAY PRACTICE.
SO WHAT ARE PRACTICE-BASED
INTERVENTIONS? THEY EMERGE FROM
PRACTICE THAT MAY HAVE ADVANTAGE
EXPIRED TO UNIVERSITY-DEVELOPED
INTERVENTIONS OR CLINIC-BASED
INTERVENTIONS, THAT MUCH OF THE
WORK OF FITTING THE TREATMENT OR
SUPPORT OR INTERVENTION TO THE
SETTINGS HAS ALREADY BEEN DONE.
SO THE INTERVENTION IS MORE
APPROPRIATE AND RELEVANT TO THE
COMMUNITY AND THE PEOPLE THAT
ULTIMATELY WILL BE REACHED BY
THAT SERVICE OR THAT SUPPORT OR
THAT INTERVENTION.
THEY MAY HAVE A BETTER CHANCE
BEING USED AND SUSTAINED THAN
THOSE DEVELOPED IN OTHER
SETTINGS LIKE UNIVERSITIES OR
CLINICS.
PRACTICE-BASED RESEARCH
INCREASES LIKELIHOOD THAT
RESULTING INTERVENTIONS WILL BE
MORE CULTURALLY RELEVANT,
TAILORED AROUND ACTIONABLE THAN
IN A LABORATORY OR UNIVERSITY
BASED SETTINGS.
THERE'S A LOT OF UTILITY AND
VALUE IN LEARNING FROM WHAT
HAPPEN IN PRACTICE.
NEXT SLIDE.
WE THOUGHT ABOUT POTENTIAL NEXT
STEPS.
FIRST WE MUST DISENTANGLE.
MANY PUBLISHED RESEARCH TRIALS
DON'T LOOK AT THIS OUTCOME AND
IT'S AN IMPORTANT ONE WE CANNOT
IGNORE OR FORGET.
WE ALSO NEED TO INVOLVE AUTISTIC
ADVOCATES.
WE'VE BEEN DOING A LITTLE BIT
BETTER AT THAT IN RECENT
RESEARCH BUT MORE WORK NEEDS TO
BE DONE.
ESPECIALLY TO INCLUDE
SELF-ADVOCATES OF COLOR AND
REALLY TO THINK ABOUT HOW WE CAN
BETTER UNDERSTAND THAT
INTERSECTIONALITY OF RACE AND
AUTISM.
WE ALSO NEED TO DEVELOP AND
EVALUATE CULTURALLY RESPONSIVE
INTERVENTION AND ANTI-RACIST
PROGRAMS FOR INDIVIDUALS AND
FAMILIES.
AND WE NEED TO INCREASE
WORKFORCE DIVERSITY, BOTH AMONG
RESEARCH TEAMS AND BETWEEN
PROVIDER AND CLIENT OR SCHOOL
EDUCATOR AND STUDENTS, THAT
INCLUDES NOT JUST RACE AND
ETHNICITY BUT NEURODIVERSITY.
WE ALSO NEED TO FUND EXISTING
SYSTEMS AND CHANGE POLICIES THAT
CONTRIBUTE TO INEQUITIES.
SO THINKING ABOUT, AGAIN,
SPECIAL EDUCATION DOLLARS
APPROPRIATED.
AND WE NEED FUNDING MECHANISMS
AND MECHANISMS BEYOND SINGLE
R01s TO THINK ABOUT AND
ADDRESS HEALTH AND RACIAL EQUITY
IN AUTISM, LIKE BRIAN MENTIONED
TWO DISTINCT CONSTRUCTS.
NEXT SLIDE.
AND SO WE WANT TO THANK OUR
COLLEAGUES FOR THEIR
CONTRIBUTIONS TO THIS PROJECT.
THANK YOU FOR HAVING US TODAY
AND FOR YOUR TIME.
>>THANK YOU.
THE NEXT SPEAKER IS DR. SANDY
MAGAÑA, PROFESSOR OF AUTISM AND
NEURODEVELOPMENTAL DISABILITIES,
UNIVERSITY OF TEXAS AUSTIN.
WELCOME AND THANK YOU
>>THANK YOU.
I ENJOYED THE PREVIOUS
PRESENTATION, HOPEFULLY MINE CAN
MAP ON BECAUSE I TOTALLY -- THE
UNDERSTANDING OF STRUCTURAL
INEQUITIES AND RACISM THAT
GOINGS ON AND HOW IT CONTRIBUTES
TO THE LIVES OF PEOPLE WITH
AUTISM IN THEIR FAMILIES.
I'M GOING TO TALK -- NEXT SLIDE.
I KEEP THINKING I'M THE ONE THAT
HAS TO MOVE THE SLIDE.
I'M GOING TO TALK ABOUT
EXTENDING, LOOKING AT RACIAL AND
ETHNIC DISPARITIES IN HEALTH
OUTCOMES, WORK ON RELATIONSHIP
TO THAT, BUILDING ON THE IDEA
MENTIONED ABOUT CULTURALLY
TAILORED INTERVENTION AND WHY WE
NEED MORE FUNDING FOR THAT IN
AUTISM, AND INTERVENTION WE'RE
DEVELOPING FROM STUDY CALLED
PODER.
SO, WE HEARD A LOT OF OVERVIEW
OF RESEARCH GOING ON ON
DISPARITIES AND AUTISM, RACIAL
AND ETHNIC DISPARITIES, AND I
THINK THAT WAS REALLY GOOD.
I WANT TO GET HOLD OF SLIDES SO
I CAN LOOK INTO THE STUDY, MANY
OF THE STUDIES THAT WERE
HIGHLIGHTED THERE.
WE TALKED ABOUT DISPARITIES AND
DIFFERENCES IN DIAGNOSIS, AND
DISPARITIES IN AGE OF DIAGNOSIS,
ALL OF THAT SORT OF THING,
DISPARITIES IN SPECIALTY
SERVICES HAS BEEN DONE IN
EDUCATION.
A LOT OF WHAT WAS HIGHLIGHTED
PREVIOUSLY HAD TO DO WITH
EDUCATION AND I'VE DONE SOME
WORK ON DISPARITIES IN HEALTH
CARE ACCESS AND QUALITY.
AND OF COURSE WE NEED MORE
RESEARCH ON ALL OF THOSE THINGS
RIGHT NOW.
BUT I THINK WE ALSO NEED TO
FOCUS ON HEALTH OUTCOMES, AND
EXPLORE -- AS BRIAN SAID, IT'S
IMPORTANT TO UNDERSTAND THAT YOU
HAVE TO IDENTIFY THOSE
DISPARITIES IN ORDER TO CREATE
EQUITY, RIGHT?
IN ORDER TO LEAD TO EQUITY OR
DEVELOP INTERVENTIONS TOWARDS
EQUITY, IT'S IMPORTANT TO
IDENTIFY WHERE THE ISSUES ARE.
AND SO WE NEED TO UNDERSTAND
ACTUAL PHYSICAL HEALTH OUTCOMES
FOR ADULTS AND CHILDREN,
AUTISTIC ADULTS AND CHILDREN,
ALSO WHAT CONTRIBUTES AND HOW WE
CAN ADDRESS IT.
NEXT SLIDE.
I'M GOING TO TELL YOU ABOUT WORK
WITH A GROUP WITH THE HEALTHY
WEIGHT RESEARCH NETWORK, FUNDED
BY HRSA, ONE OF THE MEMBER
ORGANIZATIONS HERE.
AND WE WERE LOOKING AT RACIAL
AND ETHNIC DISPARITIES IN
OBESITY AND OVERWEIGHT STATUS
AMONG BOYS WITH AUTISM.
NEXT SLIDE.
WE LOOKED AT THE ABCD STUDY, AN
NIH-FUNDED STUDY, ADOLESCENT
BRAIN COGNITIVE DEVELOPMENT
STUDY.
WHAT'S NICE, IT'S A VERY LARGE
SAMPLE THAT DOES -- HAS MOSTLY
STAGE PROBABILITY, SAMPLE OF
CHILDREN BETWEEN 9 AND 10, AND
THEY DO HAVE A LOT OF SOCIAL
DETERMINANTS OF HEALTH IN
THEIR -- AS VARIABLES IN THIS
DATASET WHICH I THINK IS NICE.
I'LL TALK BRIEFLY ABOUT THAT
WHEN I GET TO TALKING ABOUT
RESULTS, BUT IN THIS ANALYSIS WE
SELECTED ONLY BOYS BECAUSE THE
SAMPLE OF GIRLS IS SMALL.
SAMPLE OF PEOPLE WITH AUTISM IS
VERY SMALL IN THIS STUDY.
WHEN YOU NARROW DOWN BY GENDER
IT'S VERY SMALL.
WE'RE LOOKING SPECIFICALLY AT
BOYS BETWEEN 9 AND 10.
NEXT SLIDE.
WE DID MEAN COMPARISONS ON BODY
MASS INDEX, DISEASE SCORE OF
BODY MASS INDEX.
YOU CAN SEE KIND OF A SIMILAR
PATTERN.
SO YOU SEE THAT THE NON-LATINO
WHITES IN THE MIDDLE HAVE THE
LOWEST BMI SCORE.
AND IT'S SIGNIFICANTLY LOWER.
AND, YEAH, NEXT SLIDE.
WHEN YOU DIVIDE INTO OVERWEIGHT
OBESITY STATUS, COMBINING
OVERWEIGHT AND OBESITY USING BMI
SCORE YOU CAN SEE THAT PATTERN
HERE A LITTLE MORE STARKLY, VERY
SIGNIFICANT FINDINGS WHERE WHITE
CHILDREN HAVE THE LOWEST RATE OF
OBESITY, OVERWEIGHT OR OBESITY
STATUS, THEN LATINO AND BLACK.
WE'VE DONE SOME FURTHER ANALYSIS
JUST LOOKING AT SOME OF THOSE
SOCIAL DETERMINANT ISSUES THAT
BRIAN HIGHLIGHTED, THINGS LIKE
NOT ONLY -- LIKE NEIGHBORHOOD
ENVIRONMENT, WHERE PEOPLE LIVE,
SOCIOECONOMIC CONDITION,
DIFFERENT BETWEEN WHITE, LATINO,
BLACK, COMPARED TO QUITE, QUITE
DIFFERENT.
IT'S HARD TO GET TO THAT POINT.
NEXT SLIDE.
LOOKING AT OBESITY IS IMPORTANT
AND OTHER HEALTH OUTCOMES.
IT WAS MENTIONED PREVIOUSLY
DIABETES AND OTHER THINGS MIGHT
BE DIFFERENT FOR RACIAL AND
ETHNIC GROUPS, AND WE DO KNOW
THAT LATINO, FOR EXAMPLE, BLACK
CHILDREN COMPARED TO WHITE IN
GENERAL IN THE GENERAL
POPULATION, YOU KNOW, THERE ARE
DISPARITIES, AND THERE ARE
DISPARITIES BETWEEN AUTISTIC
CHILDREN AND TYPICALLY
DEVELOPING CHILDREN IN OBESITY
AS WELL, REALLY IMPORTANT TO
LOOK AT THOSE INTERSECTIONS.
THIS IS A STUDY WE'RE DOING
THAT'S ALSO FUNDED BY A PARTNER
AGENCY, ADMINISTRATION ON
COMMUNITY LIVING, NIDILRR, WE'RE
LOOKING AT PROMOTING OBESITY
PREVENTION, PROMOTING HEALTH,
POSITIVE HEALTH OUTCOMES.
IN THIS STUDY WE INTERVIEWED 100
PARENT-CHILD DYADS, LATINO
PARENT-CHILD DYADS IN TEXAS AND
ILLINOIS.
PARTNERS IN ILLINOIS LED BY
YOLANDA BEL CASAR, FINDING THE
BLUE IS HIGHEST RATE OF OBESITY
THERE, COMPARED TO GENERAL
SAMPLE OF MEXICAN AMERICAN
CHILDREN, ALSO VERY HIGH, BUT
OURS IS SLIGHTLY HIGHER.
A SAMPLE OF AUTISTIC CHILDREN.
SO SIGNIFICANTLY HIGHER THAN
THOSE GROUPS.
YOU CAN SEE HOW THE INTERSECTION
PLAYS OUT WITHIN THE SAMPLE.
WE ARE DOING FURTHER RESEARCH ON
THAT.
WE'RE WORKING ON UNDERSTANDING A
LITTLE BIT ABOUT WHAT
CONTRIBUTES TO BMI PERCENTILE
AMONG THESE CHILDREN.
ONE OF THE THINGS WE EXAMINED
WAS PARENTING DIET STRATEGIES.
WHAT'S INTERESTING IN THE
GENERAL LITERATURE FOR CHILDREN,
AND DIET AND EXERCISE STRATEGIES
RELATED TO BMI IS THAT THEY SAY
IT'S BETTER TO MONITOR YOUR
CHILD BUT NOT TO BE CONTROLLING.
CONTROLLING STRATEGIES WOULD BE
LIKE TELLING YOUR CHILD THEY
NEED TO EAT EVERYTHING ON THE
PLATE.
MY PARENTS TOLD ME THAT.
AND MONITORING MIGHT BE JUST
MAYBE MAKING SUGGESTIONS AND,
YOU KNOW, SETTING EXAMPLE,
KEEPING TRACK OF WHAT THE
CHILDREN ARE EATING, RIGHT?
SIMILARLY WITH PHYSICAL
ACTIVITY.
BUT WHAT WE FOUND IS
INTERESTING.
WE FOUND THAT ACTUALLY PARENTS
WHO USE CONTROLLING STRATEGIES
CHILDREN ARE LOWER BMI.
THIS IS AN EXAMPLE OF LATINO
CHILDREN THAT HAD AUTISM,
INTELLECTUAL DISABILITY OR DOWN
SYNDROME BUT I WOULD SAY
MAJORITY AUTISM.
SIMILAR FINDING WITH PHYSICAL
ACTIVITY.
FINDINGS CAN BE RELATED TO
LATINO CULTURE BUT COULD BE
RELATED TO BEING CHILDREN WITH
AUTISM, INTELLECTUAL
DISABILITIES, YOU KNOW, BECAUSE
WE DO FIND THAT MANY OF THE KIDS
WITH AUTISM DO HAVE
PARTICULAR -- SENSORY ISSUES
WHICH MAY RELATE TO EATING
CERTAIN FOODS, RIGHT, THAT MAY
NOT BE HEALTHY, IT MAY BE
PARENTS WHO TELL CHILDREN EAT
EVERYTHING ON YOUR PLATE AND
MAKE SURE THEY DO, MIGHT BE GOOD
FOR THEM BECAUSE MAYBE THEY ARE
GETTING MORE HEALTHY VARIETY.
MORE RESEARCH NEEDS TO BE DONE
ON THAT TOPIC.
WE DID RECRUIT A SMALL SAMPLE OF
WHITE CHILDREN IN THIS STUDY.
WITH SIMILAR PATTERN, WASN'T
DIFFERENT FROM LATINO KIDS IN
THIS FINDING.
IT MIGHT BE CHILDREN WITH AUTISM
AND IDD YOU NEED DIFFERENT
STRATEGIES.
NOW YOU WANT TO TALK ABOUT
CULTURALLY TAILORED
INTERVENTIONS, GATHERING DATA ON
WHAT ISSUES AND CHALLENGES ARE,
WHERE THE DISPARITIES ARE.
BUT HOW DO WE ADDRESS THEM?
NEXT SLIDE.
SO PEOPLE ARE PROBABLY FAMILIAR
WITH THE STUDY LED BY
STEINBRENNER AND COLLEAGUES,
THEY DID META-ANALYSIS TO FIND
OUT TO WHAT EXTENT AUTISM
INTERVENTION RESEARCH RESEARCHS
PEOPLE OF COLOR AND LOWER
SOCIOECONOMIC STATUS AND FOUND
OUT OF 1,013 ARTICLES, 25%
REPORTED ANY DATA ON RACE AND
ETHNICITY.
TO ME THAT SAYS THAT THERE
PROBABLY ISN'T A LOT OF
DIVERSITY IN THE SAMPLE.
AND THEN THEY FOUND OVER TIME
THAT IT'S SLIGHTLY INCREASED,
NOT A LOT.
THE ONES THAT DID REPORT THOSE
25% THAT DID REPORT, 64%, 65%
WERE WHITE, 9.4 LATINO, 7.7
BLACK, 6.5 ASIAN.
IT DOESN'T QUITE MATCH A CENSUS
OF THE U.S. POPULATION.
EVEN THOSE 25%.
SO WE KNOW THAT PEOPLE OF COLOR
ARE NOT BEING INCLUDED IN
INTERVENTION RESEARCH FOR
AUTISM.
THINK ABOUT THE REASONS WHY
PEOPLE ARE UNDERREPRESENTED IN
AUTISM RESEARCH.
THERE COULD BE MISTRUST OF
HEALTH CARE PROVIDERS IN
RESEARCH.
RESEARCH MAY BE CONDUCTED IN
UNFAMILIAR SETTINGS LIKE
CLINICIAN ON THE UNIVERSITY
CAMPUS, FOR EXAMPLE.
SITES MAY BE FAR FROM THE BIPOC
COMMUNITIES.
FAMILIES MAY NOT BE ABLE TO TIME
OFF WORK MAYBE THEY DON'T HAVE
FAST AND RELIABLE INTERNET,
NON-ENGLISH SPEAKERS ARE OFTEN
EXCLUDED.
A LOT OF STUDIES INCLUDE PEOPLE
WITH SOLID DIAGNOSIS OF AUTISM.
IF THEY ARE NOT YET DIAGNOSED,
AND WE KNOW THAT BIPOC
POPULATIONS ARE DIAGNOSED LATER,
SO THEY MAY BE EXCLUDED FOR THAT
REASON TOO.
I WANT TO POINT OUT THAT DOING
CULTURAL ADAPTATIONS IS MUCH
MORE WIDELY DONE IN MENTAL
HEALTH, IN THE MENTAL HEALTH
FIELD, LOOKING AT MENTAL HEALTH
INTERVENTIONS WITH CHILDREN AND
ADULTS, THERE'S A LOT MORE
RESEARCH ON THAT TO THE EXTENT
THEY CAN DO SEVERAL
META-ANALYSES ON CULTURAL
ADAPTATION.
THEY FOUND GREAT EFFECTS,
IMPORTANT EVIDENCE THAT SHOWS
CULTURAL ADAPTATIONS MAKE A
DIFFERENCE.
THEY FOUND MODERATE TO LARGE
EFFECTS FOR CULTURALLY ADAPTED
INTERVENTIONS, THOSE CONDUCTED
IN NATIVE LANGUAGE WERE TWICE AS
EFFECT AS ENGLISH, MANY PEOPLE
WHO MIGHT BE IMMIGRANT AND SPEAK
SOME ENGLISH MIGHT GET INCLUDED
IN AN ENGLISH-SPEAKING
INTERVENTION WHEN THEY WOULD
HAVE BEEN MORE COMFORTABLE IN
LANGUAGE OF ORIGIN.
INTERVENTIONS FOR SPECIFIC
GROUPS FOUR TIMES MORE LIKELY,
THAT'S ONE OF THE REASONS WE
WORKED WITH SARAH AND OTHERS TO
ADAPT PARENTS TAKING ACTION TO
BLACK FAMILIES SPECIFICALLY BUT
THEN ALSO DID A SEPARATE
ADAPTATION FOR CHINESE IMMIGRANT
FAMILIES, ANOTHER ONE FOR NAVAJO
FAMILIES, AND REALLY USING THE
STAKEHOLDERS TO MAKE ADAPTATIONS
THAT ARE IMPORTANT FOR
INTERVENTIONS.
IT IS ITERATIVE, IT'S NOT A ONE
AND DONE THING.
UPDATING THE INTERVENTION IS
CONTINUAL BASED ON FEEDBACK.
WE'RE STILL CHANGING.
IT'S IMPORTANT TO INCLUDE STAKE
HOLDERS, FAMILIES AND ADVOCATES,
WHETHER IT'S EXISTING OR
CREATING A NEW ONE FOR THAT
COMMUNITY, MAKING THOSE CHANGES
OR MAKING THAT INTERVENTION
BASED ON STAKEHOLDER INPUT.
DOING PILOT IMPLEMENTATION AND
MAKING TWEAKS AND UPDATING
INTERVENTION.
THERE'S SOME BEST PRACTICES THAT
WE'VE FOUND IN TERMS OF RESEARCH
BUT ALSO EXPERIENCE, WHEN YOU'RE
CULTURALLY DEVELOPING OR
ADAPTING OR EVALUATIONING
INTERVENTION.
INVOLVING STAKEHOLDERS IS SUPER
IMPORTANT EVERY TIME.
USING PEER-BASED METHODS,
WHETHER IT'S USING TO HELP
DELIVER INTERVENTION OR
RECRUITMENT OR ASPECTS, SUPER
IMPORTANT, CREATING AND
ADAPTING, TRANSLATING MATERIAL,
ENSURING CONTENT IS RELEVANT, IF
YOU'RE ADAPTING SOMETHING,
YOU'RE NOT TALKING SOMETHING
THEY WOULDN'T BE ABLE TO RELATE
TO, ENSURING ACCESSIBILITY, AND
REDOING EFFORT.
MAKING SURE YOU'RE IN THOSE
NEIGHBORHOODS.
WE USE ECOLOGICAL VALIDITY
FRAMEWORK, IT DOES KIND OF FOCUS
YOU ON DIFFERENT DIMENSIONS THAT
YOU WANT TO THINK ABOUT, WHETHER
LANGUAGE, PERSONS, CONTEXT,
DIFFERENT THINGS YOU WANT TO
TAKE INTO ACCOUNT.
WE HAVE THE PODER STUDY,
INTERVIEWING PARENTS AND CHILD
DYADS, AND FROM THAT WE'RE
LEADING INTO PILOT INTERVENTION
THAT WILL DEVELOP FURTHER ALONG
THE GOAL IS TO PROMOTE HEALTH
AND WELL-BEING OF THE CHILDREN
WITH DISABILITIES BUT ALSO THEIR
MOTHERS AND FAMILY MEMBERS,
BECAUSE MOTHERS ARE OFTEN THE
PRIMARY CAREGIVER OR COULD BE A
GRANDMOTHER OR OTHER MEMBER OF
THE FAMILY THAT'S PRIMARY AND
OFTEN THEY ARE NOT FOCUSING ON
THEIR OWN HEALTH.
IT'S IMPORTANT TO ALSO PAY
ATTENTION TO THEM.
WE CREATED A TEN WEEK
CURRICULUM, TEN INDIVIDUAL
REMOTE SESSIONS, AND THEN WE
HAVE A MULTI-FAMILY GATHERING
THAT WILL TAKE PLACE WHEN WE
HAVE A GROUP OF FAMILIES WHO HAD
BEEN STARTING THE PROGRAM WHERE
THEY CAN SHARE EXPERIENCES AND
DO DEMONSTRATION PROJECTS AND
PHYSICAL ACTIVITY PROJECTS WITH
THE WHOLE FAMILY.
MULTI-FAMILY GROUP GATHERINGS
WILL BE NOT JUST CHILD AND
MOTHER BUT DADS, SIBLINGS,
WHOEVER ELSE WANTS TO COME.
WE'RE DOING PRE AND POST TESTS
CONDUCTED BY GRAD STUDENTS, AND
AFTER -- I WANT TO SAY THE
PEOPLE DELIVERING THE
INTERVENTION AS I MENTIONED
BEFORE, IT'S IMPORTANT TO USE
PEERS SO THEY ARE PARENTS OF
CHILDREN WITH DEVELOPMENTAL
DISABILITIES, AND THEY ARE DOING
REMOTE SESSIONS WITH
PARTICIPANTS.
I WANT TO TALK ABOUT THE WORK
FORCE, THAT WAS MENTIONED
EARLIER, WE NEED RESEARCHERS
FROM DIFFERENT BACKGROUNDS, ALSO
WHO ARE AUTISTIC AND HAVE
DIFFERENT LEVELS OF DISABILITY.
IT'S IMPORTANT TO HAVE VOICES AS
PART OF THE RESEARCH TEAM.
AND ONE OF THE THINGS I NOTICED,
I WANT TO SUGGEST NIH TAKE A
LOOK, I'M ON THE STUDY SECTION
AND DO READ A LOT OF GRANT
PROPOSALS, I SEE THAT OFTEN
THERE MIGHT BE A GROUP PROPOSING
TO DO A STUDY WITH RACIAL AND
ETHNIC MINORITY GROUPS BUT THEY
HAVE THE TEAM -- THE TEAM HAS NO
EXPERIENCE DOING THAT.
THERE'S NO RACIAL AND ETHNIC
DIVERSITY IN THE TEAM.
SO THINKING OF WAYS TO BRING
IN -- TO ENSURE PEOPLE TO HELP
WITH THAT WORKFORCE ISSUE.
THAT'S ALL I WANT TO SAY.
>>THANK YOU, DR. MAGAÑA.
THAT ISSUE HAS BEEN PROPERTY UP
TO NIH BEFORE, I WANT YOU TO
KNOW WE'VE BEEN TALKING ABOUT IT
AT THE LARGER NIH LEVEL.
NOW WE'LL HEAR FROM FOUR
ADVOCATES, FIRST A FELLOW AT THE
UMass BOSTON INSTITUTE FOR
COMMUNITY INCLUSION.
NEXT , LYDIA BROWN.
WE HAVE MISS CAMILLE PROCTOR,
FOUNDER AND EXECUTIVE DIRECTOR
OF COLOR OF AUTISM FOUNDATION
AND MOTHER OF A CHILD ON THE
AUTISM SPECTRUM.
AND FINALLY DR. KRYSTAL
HERNANDEZ, IS EXECUTIVE DIRECTOR
OF THE TULSA CENTER FOR
BEHAVIORAL HEALTH AND MOTHER OF
CHILD ON THE AUTISM SPECTRUM.
WELCOME AND THANK YOU VERY MUCH
FOR BEING HERE.
>>OKAY.
GYASI BURKS-ABBOTT.
I'M A SELF-ADVOCATE FAMILY
MEMBER.
A LOT OF PROBLEMS ARE RELATED TO
THIS INVESTMENT IN GOVERNMENT
SERVICES WHICH HAS LEGACY OF
SYSTEMIC RACISM, FOR INSTANCE
SOME OF THE PROBLEMS THAT WE
HAVE LIKE WITH THE SSI ASSET
LIMITS THAT HAVEN'T BEEN UPDATED
SINCE 1989, IT'S LIKE $2,000 IN
YOUR ACCOUNT, WHICH I PERSONALLY
HAVE SUFFERED FROM.
I'VE ALWAYS BEEN IN THE POSITION
OF NOT BEING ABLE TO MAKE ENOUGH
MONEY TO BE SELF-SUPPORTING BUT
MAKING JUST ENOUGH TO JEOPARDIZE
MY BENEFITS, WORKFORCE CRISIS
WHICH WAS EXACERBATED BY THE
PANDEMIC, BUT WHICH IS ALSO
DRIVEN BY THE LOW WAGES THAT DPS
PROFESSIONALS GET.
AND OF COURSE TWENTY YEARS AFTER
THE SUPREME COURT OLMSTEAD
DECISION.
BASICALLY THE REASON FOR THE
WAITLIST IS BECAUSE OF THE
DISINVESTMENT IN GOVERNMENT
SERVICES.
ONE REASON WE DON'T HAVE
UNIVERSAL HEALTH CARE IS
BECAUSE IN THE 40s PRESIDENT
TRUMAN PROPOSED A PLAN, SCUTTLED
BECAUSE SENATORS FROM SOUTHERN
STATES WORRIED ABOUT THAT
UNIVERSAL HEALTH CARE WOULD LEAD
TO INTEGRATION OF HOSPITALS.
AN ECONOMIST TALKS ABOUT WHAT
HAPPENED IN RESPONSE TO CIVIL
RIGHTS MOVEMENT IN THE SOUTH
PUBLIC SWIMMING POOLS WERE SHUT
DOWN AND DRAINED SO NO ONE HAD
THE PUBLIC BENEFIT AND SIMILAR
PROCESS HAPPENED ON THE FEDERAL
LEVEL, IT WAS NO LONGER TO TALK
ABOUT OVERT RACISM BECAUSE OF
CIVIL RIGHTS MOVEMENT.
AS PEOPLE OF COLOR GOT ACCESS TO
SERVICES AND BENEFITS THEY WERE
IN ESSENCE DRAINED, EVEN WHEN
RACE IS NOT SPECIFICALLY
INVOLVED, THE SIMPLE QUESTION
HOW MUCH WILL THIS COST IS
COMPLICATED BY ASSUMPTIONS OR
JUDGMENT WHO IS WORTHY OR NOT
WORTHY, LIKE WHEN PRESIDENT
BIDEN WENT TO DO THE AMERICAN
JOBS PLAN, WANTED INFRASTRUCTURE
TO INCLUDE NOT JUST ROADS AND
BRIDGES BUT ALSO HUMAN
INFRASTRUCTURE, DIRECT SERVICE
PROFESSIONALS, PAID MEDICAL
LEAVE, FROM REPUBLICANS AND
DEMOCRATS SAYING THAT'S A WASTE
OF MONEY, STICK WITH ROADS AND
BUSINESSES, DON'T WORRY ABOUT
THE PEOPLE WHO USE THOSE ROADS
AND BRIDGES.
IT'S INTERESTING HOW THAT'S
CONSIDERED SOCIAL SERVICES ARE
OFTEN SEEN AS A WASTE OF MONDAY
BUT FOR INSTANCE NOT DEFENSE OR
TAX CUTS FOR THE RICH.
AND I THINK MOVING FORWARD WE
NEED TO MOVE AWAY FROM
TRICKLEDOWN ECONOMICS TO AN
ECONOMICS OF LIFTING UP.
OR AS HEATHER McGEE TALKS
ABOUT, WE NEED TO MOVE AWAY FROM
WHAT SHE CALLED ZERO SUM
THINKING THAT GIVING TO ONE
GROUP TAKES AWAY FROM ANOTHER
GROUP, AND WE NEED TO THINK IN
TERMS OF SOLIDARITY DIVIDENDS
WHERE WE BENEFIT WHEN WE
CONTRIBUTE TO EACH OTHER'S
WELFARE.
THANKS FOR LISTENING.
>>I'M CAMILLE PROCTOR,
EXECUTIVE DIRECTOR OF COLOR OF
AUTISM FOUNDATION.
AND I GUESS I WOULD HAVE TO
DOVETAIL OFF OF WHAT DR. LOCKE
AND DR. BOYD SPOKE ABOUT.
THERE IS A DISPARITY STILL WHILE
DIAGNOSIS ARE, MORE CHILDREN ARE
BEING DIAGNOSED, THAT'S A GOOD
THING, BUT DISPARITIES STILL
EXIST.
PERHAPS MORE AFRICAN AMERICANS
OR BLACK PEOPLE KNOW ABOUT
AUTISM BUT ARE THEY TAKING
ACTION?
WHEN WE LOOK AT CERTAIN AREAS OF
THE COUNTRY, IN ATLANTA THERE'S
A BLACK COMMUNITY CALLED
CASCADES, PRIMARILY A MIDDLE
CLASS, UPPER MIDDLE CLASS BLACK
COMMUNITY.
IN THAT COMMUNITY THERE ARE NO
SERVICE PROVIDERS.
AND SO THOSE FAMILIES HAVE TO
DRIVE BETWEEN 30 TO EVEN UP TO 2
HOURS TO GET THE SERVICES THAT
THEY NEED.
AND I THINK THAT WE DO NEED TO
TAKE ACTION IN REGARDS TO
CREATING EQUITABLE OUTCOMES FOR
ALL.
WHETHER IT BE EARLY
INTERVENTION, WHETHER IT BE
JOBS, THERE NEEDS TO BE SOME
EQUITY GIVEN TO THESE
COMMUNITIES OF COLOR.
I DON'T HAVE AN AWFUL LOT TO SAY
TODAY BECAUSE I THINK DR. BOYD
AND DR. LOCKE COVERED WHAT I WAS
THINKING.
I WILL LET SOMEONE ELSE SPEAK
NOW.
>>I'M LYDIA BROWN, WEARING A
LIGHT TAN SUIT JACKET, MY PIN
SAYS THERE'S NO WRONG WAY TO
HAVE A BODY, BEHIND ME IS A FAKE
BACKGROUND FROM A WALL FROM
FLOOR TO CEILING OF BOOKS AND
BOOKSHELVES, AND IT'S KIND OF A
DREAMY WALL THAT I WISH I
ACTUALLY HAD.
IF ANY OF YOU HAVE SUCH A WALL,
I WOULD BE INCREDIBLY ENVIOUS.
THANK YOU FOR THE OPPORTUNITY TO
JOIN YOU HERE AND TO SPEAK TO
SOME OF THE ISSUES THAT AUTISTIC
PEOPLE OF COLOR EXPERIENCE
INDIVIDUALLY AND RESULT OF
SYSTEMATIC RACISM AND ABLEISM
IMPACTING OUR LIVES.
AS FOUNDING DIRECTOR OF THE FUND
I HAVE EXPERIENCED COUNTLESS
STORIES FROM HUNDREDS IF NOT
THOUSANDS OF AUTISTIC PEOPLE OF
COLOR FROM MANY DIFFERENT
BACKGROUNDS, MANY SPECIFIC
COMMUNITIES, WHO EXPERIENCE THE
IMPACT OF LIFELONG ECONOMIC
RACIAL AND DISABILITY-BASED
DISPARITIES.
WE KNOW ACCORDING TO THE BUREAU
OF LABOR STATISTICS AND OTHER
STATISTICS COLLECTED ON
EMPLOYMENT OUTCOMES FOR DISABLED
PEOPLE, THAT AUTISTIC PEOPLE AND
BROADER DISABILITY COMMUNITY
FACE HIGHER RATES OF
UNEMPLOYMENT AND POVERTY,
COMPARED TO THE POPULATION IN
GENERAL.
WE ALSO KNOW AUTISTIC PEOPLE OF
COLOR LIKE DISABLED PEOPLE OF
COLOR MORE GENERALLY FACE
SHARPER DISPARITIES.
EARNINGS THRESHOLD IS EXPECTED
TO BE LOWER IN TERMS OF ACTUAL
WAGES AND LIFETIME EARNINGS,
COMPARED TO PEOPLE WITHOUT
DISABILITIES, AND FOR AUTISTIC
PEOPLE OF COLOR THERE'S
DISPARITIES THAT ARE FURTHER
EXACERBATE.
IN REAL TERMS WE ENCOUNTER
STORIES WITH INABILITY TO MEET
RENT PAYMENT OBLIGATIONS AS WELL
AS MAKE UTILITIES PAYMENTS, AND
AS A RESULT ARE SCRAMBLING FROM
MONTH TO MONTH DESPERATELY
ATTEMPTING TO GRAB TOGETHER
RESOURCES TO ATTEMPT TO POOL
ENOUGH MONEY TO STAVE OFFER THE
POTENTIAL EVICTION AND
HOMELESSNESS.
THERE ARE MANY AUTISTIC PEOPLE
OF COLOR WHO RECEIVE GRANTS FROM
THE AUTISTIC PEOPLE OF COLOR
FUND, WHO FACED CHRONIC
HOMELESSNESS, MULTIPLE
EVICTIONS, AND LIVER IN A
STATE -- LIVE IN A STATE OF
ECONOMIC INSTABILITY.
AS WELL AS DETERMINATIONS OF
COMPENSATION, RAISING,
PROMOTIONS, REGARDING
DISCRIMINATION IN REGARD TO
ACCESSING PROGRAMS TO FORM
SOCIAL SAFETY NET FOR PEOPLE
WITH DISABILITIES AND LOW AND
MODERATE INCOME.
MANY AUTISTIC PEOPLE OF COLOR
ARE PLACED IN A SITUATION WHERE
THEY ARE UNABLE TO MAINTAIN
ACCESS TO SUPPORTS THEY NEED TO
MAINTAIN INDEPENDENTS AND
CONNECTION TO THE COMMUNITY AS
WELL AS TO BE ABLE TO ACCESS
SUPPORT ECONOMICALLY NECESSARY
TO LIVE A MINIMALLY DECENT
QUALITY OF LIFE.
THIS IS BEFORE REACHING
DISPARITIES AND DIAGNOSE
IDENTIFICATION A- DIAGNOSIS
ASSESSMENT.
IT IS NOT LOST ON ME THAT THOSE
OF US WHO HAVE CREATE AND LEAD
AUTISTIC PEOPLE OF COLOR FUN'S
WORK ARE AMONG THE MORE
PRIVILEGED IN THE COMMUNITY IF
ONLY RELATIVELY AND PRECARIOUSLY
SO.
BECAUSE WE HAVE ACCESS TO
COMMUNITY SUPPORT, BECAUSE WE
CURRENTLY HAVE ACCESS TO
EMPLOYMENT, AND BECAUSE WE
CURRENTLY HAVE ACCESS TO
HOUSING.
THAT'S NOT TRUE FOR SIGNIFICANT
PROPORTION OF AUTISTIC PEOPLE OF
COLOR WHO RECEIVE MICRO GRANT
SUPPORT FROM THE ORGANIZATION.
FOR A RANGE OF REASONS AUTISTIC
PEOPLE OF COLOR WHO COME FROM
THE MINORITIZED RELIGIOUS
COMMUNITIES, MINORITIED ETHNIC
COMMUNITIES, AND WHO ARE
MULTI-RACIAL AND MULTI-ETHNIC
THEMSELVES, FACE A MULTITUDE OF
FORMS OF SYSTEMATIC
DISCRIMINATION THAT LEAD TO POOR
OUTCOMES IN SHORT TERM AND LONG
TERM, FACING HIGHER RATES OF
SCHOOL PUSHOUT ON THE JOB
DISCRIMINATION, HOUSING
DISCRIMINATION, DISCRIMINATION
IN CREDIT AND LENDING DECISIONS
AND ABILITY TO MAINTAIN ACCESS
TO COMMUNITY INTEGRATION AS WELL
AS TO LIVE A LIFE FREE OF
CRIMINALIZATION AND PROFILING.
I THINK ABOUT THE EXPERIENCES
THAT MANY OF US HAVE SHARED IN
OUR OWN COMMUNITY CONVERSATIONS,
HOW IT IS UNFORTUNATELY A COMMON
EXPERIENCE SIMPLY FOR EXPERIENCE
OF LIVING A AUTISTIC AT THE SAME
TIME.
I THINK ABOUT THE EXPERIENCES OF
AUTISTIC PEOPLE OF COLOR, WHO
BELONG TO THE LGBTQ COMMUNITY AS
WELL.
HOW OUR RIGHTS AND ABILITY TO
EXERCISE AUTONOMY ARE UNDER
DIRECT ATTACK IN DOZEN STATES
AND WITHOUT THE ABILITY TO RELY
ABLE ACCESS NOT ONLY GENDER
CONFIRMING CARE BUT EVEN
CULTURALLY RESPONSIVE SUPPORT
WITHIN DISABILITY SERVICES
PROVIDER LEADS MANY PEOPLE OF
COLOR, QUEER AND TRANS, IN
PARTICULAR, IN A HARD PLACE TO
CHOOSE BETWEEN LOSING ACCESS TO
SERVICES TO SURVIVE AND
PARTICIPATE IN COMMUNITIES OR TO
BE IN BASICALLY RESPECTED AND
TREATED WITH CARE AND SUPPORT.
IT SHOULD NOT BE THE CASE WE'RE
WORRIED ABOUT LONG-TERM MENTAL
AND PHYSICAL HEALTH IMPACTS.
IT SHOULD NOT BE THE CASE WE'RE
WORRIED ABOUT ABILITY TO AC SIS
DIGNITY AND END OF LIKE CARE AND
AFTER DEATH, SHOULD NOT BE THE
CASE WE'RE WORRIED ABOUT HAVING
A LIFESPAN CUT SHORT.
THAT IS THE FINANCIAL IMPACT ON
AUTISTIC PEOPLE OF COLOR AND
OTHER DISABLED PEOPLE OF COLOR
IN GENERAL, WHO ALSO SERVE AS
FAMILY CAREGIVERS WITHIN OUR OWN
FAMILIES.
I AM MYSELF A FAMILY CAREGIVER
WHO IS AUTISTIC AND RESPONSIBLE
FOR PROVIDING CARE AND SUPPORT
TO OTHER FAMILY MEMBERS WITH
DISABILITIES, AND THIS IS NOT AN
UNUSUAL SITUATION.
WHETHER AS PARENTS, SIBLINGS,
SPOUSES OR OTHER FAMILIAL
CAREGIVERS THOSE IN COMMUNITIES
OF COLOR WHO ARE ALSO AUTISTIC
OR OTHERWISE DISABLED WILL
EXPERIENCE SIGNIFICANTLY
DIMINISHED CAPACITY FROM OUR
EARNINGS, AND ABILITY TO BUILD
INCOME AND ASSETS, MAINTAIN AX
SAYS TO ASSETS BECAUSE OF OUR
CARE AND RESPONSIBILITIES THAT
WE HAVE WITHIN OUR FAMILIES.
WE FACE ADDITIONAL STRESSORS,
LACK OF SUPPORT AND
UNDERSTANDING, AND WE FACE
DISCRIMINATION IN THE CHILD AND
FAMILY REGULATORY SYSTEMS IN
COURT AND IN FOSTER SERVICES AND
IN PARENTAL SUPPORT AGENCIES.
AS WELL AS PROGRAMS THAT ARE
INTENDED TO SUPPORT FAMILIES IN
WHICH ONE OR MORE PEOPLE ARE
AUTISTIC.
WE SIMULTANEOUSLY FACE
CONSISTENT REMOVAL FROM PUBLIC
DISCOURSE AND CONVERSATION WHEN
CONSIDERING WHAT TYPES OF
SUPPORT AUTISTIC PEOPLE NEED AND
THE FACT THAT MANY OF US ARE
DIRECT CAREGIVERS AND DIRECT
SUPPORT WORKERS WHILE ALSO
NEEDING SUPPORT OURSELVES AND IN
OUR OWN LIVES.
SO I LEAVE YOU WITH THIS AGAIN
REMINDER OF THE ISSUES THAT
DISPROPORTIONATELY IMPACT
AUTISTIC PEOPLE OF COLOR AND
OTHER DISABLED PEOPLE OF COLOR,
WE REFER TO THIS IN MANY SUCH
MARGINALIZED COMMUNITIES AS
ADDITIONAL TAX LEVIED ON OUR
EARNINGS CAPACITY IN THE SHORT
TERMS OF WAGES AND SALARIES AS
WELL AS LONG-TERM IMPACT OVER
LIFETIME EARNINGS, AND THAT THE
EARNINGS POTENTIAL OF A PERSON
WHO DOES NOT HAVE DISABILITIES
AND IS NOT A CARETAKER ARE GOING
TO BE SIGNIFICANTLY HIGHER THAN
THE EARNINGS CAPACITY, OF A
PERSON WHO IS DISABLED, ALSO A
CAREGIVER AT THE SAME TIME.
SO THANK YOU VERY MUCH FOR YOUR
TIME.
AND I BELIEVE ALL THREE OF US
ARE AVAILABLE TO RESPOND TO
QUESTIONS AND FURTHER COMMENTS
FROM THE COMMITTEE MEMBERS.
>>I'M DR. KRYSTAL HERNANDEZ, A
MOTHER WITH MY YOUNGEST BEING
AUTISTIC.
WE STARTED OUR AUTISM JOURNEY
NEARLY SIX YEARS AGO WITH
TERRIBLE EXPERIENCES AND LIMITED
SUPPORTS.
I'VE MADE IT MY MISSION TO HELP
OTHERS SHARE VOICE AND STORIES
TO PUSH FOR POSITIVE CHANGE,
FOCUSED ON QUALITY INCLUSION,
DIGNITY, EQUITY.
MY FAMILY WALKS TWO CULTURES,
NATIVE AMERICAN CHEROKEE
CITIZENS AND LATINO, GIVING ME
UNIQUE EXPERIENCES AND
PERSPECTIVES BUT ALSO A LOOK
INTO THE INTERSECTIONALITY OF
BOTH, SPECIFICALLY AS RELATES TO
AUTISM JOURNEY.
EVERY DAY I'M CONTACTED BY
DOZENS OF PEOPLE ALL OVER THE
UNITED STATES, STORIES FROM
COMMUNITIES, WE HAVE TO BUILD
SYSTEMS OF EQUITY AND SAFETY.
THERE CONTINUES TO BE A NEED FOR
SPECIFIC RESEARCH, FUNDING,
DATA, SUPPORTS AND SERVICES
TRULY BUILT BY AND FOR NATIVE
AMERICANS AND LATINOS AND
AUTISM.
WHEN WE TALK ABOUT TRIBAL
NATIONS WE ALSO NEED TO
RECOGNIZE AND HONOR SOVEREIGNTY,
TO MANAGE PROGRAM JUST LIKE
STATES DO.
WE HAVE SEGMENTED AND ONE-OFF
PROJECTS, CATCHING MARKETING
CAMPAIGNS, SERVICE DESERTS, LACK
OF REPRESENTATION AND PROVIDERS,
ABSOLUTE DISCONNECT WITH
CULTURE.
WE NEED MORE AND DESERVE MORE.
WE NEED TO BE IN THE SPACE WHERE
IS DECISIONS ARE MADE, LENDING
OUR OWN KNOWLEDGE AND
EXPERIENCES TO THE ITEMS OF
CONSIDERATION FOR FUNDING,
POLICY AND PRACTICE.
WE MUST CONTINUE TO CHALLENGE
STAGNANT OPPRESSIVE AND
DISRESPECTFUL WAYS OF BUSINESS
AND COMMUNICATION.
WE NEED CULTURALLY ROOTED POLICY
AND SERVICES WHICH IS MUCH MORE
THAN A CLASS OR MARKETING, IT IS
ABOUT HONORING AND GIVING SPACE,
NOT AS AN ASIDE BUT AS BACKBONE
IN SERVICE AND SUPPORT.
OUR CULTURE A BEAUTIFUL AND
VITAL, OUR IDENTITY.
WHEN WE TELL THE PERSON THAT
THEY ARE NOT WELCOMED, ALL OF
THEM, THEIR WHOLE PERSON INTO
SPACES WHERE SAFETY AND WELLNESS
ARE SUPPOSED TO BE PARAMOUNT,
WHAT ARE WE'VE SAYING?
I WANT TO SHARE SEVEN MONTHS AGO
IN PARTNERSHIP WITH THE STATE OF
THE STATES INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES WE
LAUNCHED BLACK FEATHERS PODCAST,
YOU CAN SEE THE FLYER ON THE
SCREEN FOCUSING ON JOURNEYS WITH
DISABILITIES.
WE'VE HAD AMAZING GUESTS JOIN US
SO FAR AND MUCH MORE TO COME.
WE GET TO HEAR STRUGGLES,
TRIUMPHS BELIEFS, CUSTOMS, CALL
TO ACTION.
IT IS THEIR WORDS THAT HOLD SUCH
CRITICAL PERSPECTIVE AND POWER.
WE WERE ABLE TO HEAR HOW THE
LACK OF ACCOMMODATIONS IMPACTS
SOME ABILITY TO PARTICIPATE IN
CEREMONY AND PRACTICES, FOR
EXAMPLE A POW-WOW, ROBBING ONE
OF KNOWING AND LEARNING WITHIN
THEIR CULTURE FROM BELONGING,
OUR CULTURE IS PROTECTORY OFIVE
AND WE NEED TO ACCOMMODATE TO
ANCHOR THEM IN OUR CIRCLE.
WE HAVE ALSO HAD TRIBAL NATIONS
COUNCILWOMAN ON AND DISCUSS
YOUR -- - COME ON AND DISCUSS
PROJECTS, SPECIFICALLY THIS
MONTH'S EPISODE COMING OUT
MONDAY IS THE CHICKASAW NATION
OUTLINING HOW THEY ARE FUNDING
DISABILITIES CREATING A SHIFT TO
BE MORE RESPONSIVE FOR AUTISTIC
CITIZENS AND FAMILIES.
THEY ARE CHALLENGING OTHERS TO
DO THE SAME.
WE'VE HAD GUESTS DISCUSS
JOURNEYS.
NATIONAL INDIAN COUNCIL ON AGING
PUBLISHED A TWO-YEAR PROJECT,
UNDERSTANDING DISABILITIES IN
AMERICAN INDIANS AND ALASKA
NATIVE COMMUNITIES, I WAS
FORTUNATE TO HAVE WORKED ON THIS
MEANINGFUL PROJECT.
PLEASE SHARE THIS.
IT WAS FEATURED IN YOUR
NEWSLETTER.
THIS IS GEARED TOWARDS TRIBAL
NATIONS AND STAKEHOLDERS,
FAMILIES, INDIVIDUALS, IT'S A
PLETHORA OF RESOURCES AND
INFORMATION.
ONE ADDITIONAL POINT, LATINOS
ARE OFTEN UTILIZEERS OF CLINIC
SYSTEMS, I HEAR FROM PARENTS ALL
THE TIME, ROTATING DOCTORS AND
PROVIDERS.
REMOVING CONSISTENCY AND
MONITORING AND REDUCING
DETECTION OPPORTUNITIES,
LANGUAGE BARRIERS POSE
OBSTACLES.
CITIZENSHIP STATUS PLAYS A ROLE
IN ACCEPTING INTERVENTION.
YOU DON'T KNOW WHAT YOU DON'T
AND DON'T KNOW HOW TO GET WHAT
YOU DON'T KNOW YOU NEED.
REPRESENTATION MATTERS.
VOICES MATTER.
MOST SIGNIFICANTLY WE MATTER.
TO END I WOULD LIKE TO QUOTE A
POWERFUL HISTORICAL CHEROKEE
CHIEF, THE SECRET OF OUR SUCCESS
WE NEVER, NEVER GIVE UP.
WE ARE RESILIENT PEOPLE.
YES.
WE NEVER GIVE UP.
AT SOME POINT OUR COLT -- SOCIY
NEEDS TO MAKE IT LESS OF A
FIGHT.
WE NEED TO HAVE JOURNEYS INFORM
THROUGH CHANGE.
I'M AVAILABLE TO CONNECT.
TOGETHER WE'RE STRONGER.
I'M EXTREMELY THANKFUL FOR IACC
FOR THIS CRITICAL FOCUS ON
EQUITY AND INCLUSION.
>>THANK YOU TO ALL OF OUR
PANELISTS TODAY AND SPEAKERS FOR
THIS WONDERFUL SESSION.
WE ALL LEARNED A LOT, AND HEARD
SOME REALLY POWERFUL
PERSPECTIVES ON THIS ISSUE.
LOOKING FORWARD TO QUESTIONS AND
ANSWERS WITH THE COMMITTEE.
WE HAVE TIME FOR QUESTIONS.
I SEE YETTA MYRICK?
>>HELLO, I'VE TRANSITIONED TO
THE CALL.
HAPPY TO THE TEAM FOR BRING
THICK PANEL TOGETHER.
MANY OF YOU I'VE WORKED WITH OR
COLLABORATED OR HAVE KNOWN YOU
IN PASSING, AND SO THANKFUL FOR
YOU TO COME ON AND SHARE YOUR
EXPERIENCE AND YOUR THOUGHTS.
THE RESEARCH THAT YOU'RE DOING
IS AMAZING.
IT GIVES ME HOPE FOR PEOPLE OF
COLOR.
THIS WORK IS VITAL.
I WANT TO SAY THANK YOU TO YOU
ALL FOR WHAT YOU SHARED TODAY.
GOOD TO SEE YOU ALL.
THANK YOU.
>>THANK YOU.
NICE SEEING YOU TOO.
>>THANK YOU, YETTA.
JENNY MAI PHAN.
>>IT ECHO THE COMMENT.
THANK YOU FOR COMING AND SHARING
YOUR WORK.
TWO STATEMENTS TO SHARE AND ONE
TO HOPEFULLY GIVE YOU SOME FOOD
FOR THOUGHT TO BRING BACK TO
YOUR WORK, YOUR RESPECTIVE
WORKS.
THE FIRST IS ABOUT HOW AUTISM
STIGMA IS BEING ADDRESSED AMONG
COMMUNITY PARTNERS OF
RACIAL/ETHNIC MINORITIZED GROUP.
THERE ARE COMMUNITIES WHERE
THERE IS LOW AUTISM AWARENESS,
AND NOT ACCEPTED THAT STILL
EXISTS IN THE UNITED STATES.
AND THERE ARE SMALL GRASS ROOTS
ADVOCACY GROUPS WHO PROVIDE
EDUCATION TO THESE COMMUNITIES
THAT ARE UNDERFUNDED AND LACK
RESOURCES DESPITE STIGMA.
TALKING WITH ADVOCACY GROUPS
MYSELF, THEY LEARNED AUTISTIC
CHILDREN EXPOSED TO STIGMATIZING
PERSPECTIVES ABOUT NEGATIVELY
AFFECTING MENTAL HEALTH, SOME
CHILDREN ARE PHYSICALLY ABUSED,
MALTREATED, NEGLECTED.
IT'S SUCH A CRITICAL AND
BENEFICIAL OPPORTUNITY FOR
RESEARCHERS TO ENGAGE WITH THESE
COMMUNITIES IN A RESPONSIVE WAY,
AND RESEARCHERS CAN PARTNER WITH
GRASS ROOTED ADVOCACY GROUPS FR
HELP IF THEY DON'T KNOW WHERE TO
START.
THE SECOND STATEMENT TO THINK
ABOUT IN YOUR WORK WHICH YOU
ALREADY ARE, ABOUT NON-ENGLISH
COMMUNICATORS OR MINIMALLY
ENGLISH COMMUNICATORS WHO ARE
REFERRED TO ENGLISH AS A SECOND
LANGUAGE, ESL CLASSES IN
SCHOOLS, WHO WOULD MEET THE
CRITERIA FOR AN AUTISM
DIAGNOSIS, IF THEY WERE
APPROPRIATELY REFERRED, SOME
KIDS ARE MET WITH DOUBLE STIGMA
IN WHICH SCHOOLS AND CAREGIVERS
BELIEVE THE SOLUTION TO THEIR
EDUCATION UNDERPERFORMANCE IS TO
TEACH THEM ENGLISH.
AND IGNORE THAT THERE ARE OTHER
DEVELOPMENTAL FACTORS THAT WOULD
EXPLAIN THEIR UNDERPERFORMANCE.
SO I SPOKE WITH AN ESL TEACHER
WHO LACKS ADMINISTRATIVE SUPPORT
TO MAKE A REFERRAL FOR HER
STUDENTS WHOM SHE SUSPECT HAVE A
DEVELOPMENTAL DISABILITY, AND
SHE AND HER COLLEAGUES
EXPERIENCE EXACTLY THE SAME
PROBLEM IN THEIR SCHOOLS.
WHEN TALKING WITH CAREGIVERS THE
STIGMA IS SO INGRAINED IN THE
HOME THAT THEY REFUSE TO SEEK A
DIAGNOSIS FOR THEIR CHILD.
THERE ARE MANY LEFT BEHIND IN
OUR COUNTRY, WHO EITHER DO NOT
SPEAK ENGLISH FLUENTLY OR NOT
FLUENT ENOUGH, SO WITH THE TALKS
YOU HAVE GIVEN TODAY, I SO
APPRECIATE THE WORK YOU DO,
PLEASE KEEP DOING IT.
PLEASE SPREAD IT TO ALL OF OUR
COMMUNITIES IN OUR COUNTRY AND
REMEMBER THOSE WHO ARE STILL
LEFT BEHIND.
THANK YOU.
>>THANKS FOR YOUR COMMENTS.
I WOULD JUST RESPOND TO THAT BY
SAYING ACTUALLY IN THE LEND
PROGRAM ONE THING WE HAVE
FELLOWS DO IS WORK WITH
COMMUNITY-BASED ORGANIZATIONS, A
LOT OF COMMUNITY-BASED
ORGANIZATIONS ARE DEALING WITH
UNDERSERVED COMMUNITIES.
LIKE THERE'S AN ORGANIZATION
CALLED SAD, TO TALK ABOUT AUTISM
WITH PEOPLE, SOMALI COMMUNITY,
THERE'S ANOTHER COMMUNITY THAT
DEALS WITH THE PEOPLE IMMIGRANTS
FROM LATIN-SPEAKING COUNTRIES,
SO WE ARE ACTUALLY PROBABLY NOT
DOING ENOUGH BUT WE'RE DOING
SOMETHING.
I'M GLAD FOR YOUR COMMENT.
>>I WOULD JUST LIKE TO SAY
THIS.
DR. BOYD AND I AND JILL LOCKE
WORKED ON PROJECTS, WORKED ON A
PROJECT TOGETHER, BUT MY
ORGANIZATION, COLOR OF AUTISM
FOUNDATION, WE TAKE THE HOLISTIC
APPROACH.
WE WORK WITH PARENTS, TRAIN THE
PARENTS ON HOW TO SUPPORT THEIR
CHILDREN, TO HAVE BETTER
OUTCOMES.
WE ENCOURAGE PARENTS TO EMBRACE
THEIR CHILD'S IDENTITY.
WE WORK WITH THEM TO UNDERSTAND
WHO THEIR CHILD REALLY IS, WHO
THEY TRULY ARE.
SO, THEIR CHILDREN HAVE A SENSE
OF WORTH BECAUSE THAT'S THE
BIGGEST PROBLEM THAT A LOT OF
THESE PARENTS DON'T HAVE THE
TOOLS THEY NEED TO SUPPORT
THEMSELVES LET ALONE THEIR
CHILD.
AND IF THEY -- IF YOU CONTINUE
TO ACT AS IF YOUR CHILD IS THE
CAT
CATALYST OF OUR SORROW YOU'RE
BURDENING THEM WITH GUILT AND
SELF-WORTH.
WE DO EVERYTHING WE CAN TO
SUPPORT THE PARENT AS WELL AS
CHILD THAT WILL BE AN ADULT.
>>THANK YOU.
ANY OTHER COMMENTS?
>>I WANTED TO PIGGYBACK OFF OF
THAT IDENTITY BECAUSE ONE OF THE
WAYS THAT I LEARNED HOW TO READ
ACTUALLY WAS MY MOM WAS AN
ACADEMIC, HER SPECIALTY WAS
AFRICAN AMERICAN LITERATURE AND
FILM.
AND I WENT TO AN ALL-WHITE
SCHOOL.
ONE THING SHE WOULD DO IS HAVE
ME READ BOOKS BY AND ABOUT
AFRICAN AMERICANS.
WHILE I WAS GETTING INTO READING
AS I WASN'T DOING BUT LEARNING
ABOUT MY OWN CULTURE AND
IDENTITY, HAVING A SENSE OF
PRIDE, SO THAT'S CERTAINLY
IMPORTANT.
I'LL DEFINITELY ENDORSE THAT.
>>THIS IS LYDIA.
THANK YOU FOR YOUR COMMENTS AND
APPRECIATE THAT OUR INFORMATION
AS A GROUP HAS BEEN USEFUL TO
YOU ALL.
I THINK IT'S ALSO IMPORTANT FOR
ALL OF US TO BE VERY CLEAR ABOUT
OUR POSITIONALITY.
I SPOKE ABOUT THE EXPERIENCE OF
CONDITIONAL OR PRECARIOUS
PRIVILEGE WE MAY HOLD BY VIRTUE
OF PARTICIPATING IN THIS FORUM
AND BEING IN THIS TYPE OF SPACE,
EVEN THOUGH THERE ARE THOSE OF
US HERE INCLUDING THE FOUR ON
THIS PANEL WHO EXPERIENCE
MULTIPLE FORMS OF
MARGINALIZATION AT THE SAME
TIME.
AND SO ONE THING THAT IS REALLY
IMPORTANT FOR US TO BE
SPECIFICALLY CONCERNED WITH, AND
I SPOKE IN GENERALITIES BECAUSE
OUR ORGANIZATION DOES NATIONAL
AND GLOBAL WORK, AND I ONLY HAD
A FEW MINUTES TO SPEAK WITH YOU,
BUT TO NAME COMMUNITIES WE'RE
WORKING WITH, BEING FUNDED AND
WHERE WE'RE DOING OUR WORK.
I'M JOINING YOU TODAY FROM THE
UNSEATED TRADITIONAL LENS OF THE
HO CHUNK NATION PEOPLE, THE
LANDS HAD TO BE PURCHASED BACK
FROM THE TERRITORIAL GOVERNMENT
AS OPPOSED TO REPATRIATED AND
RETURNED.
THESE TRAUMAS OF CLONALIZATION
CONTINUE TO IMPACT DISABLED
PEOPLE OF COLOR AND WAYS WE CAN
BE ASSESSED AND RECEIVE
SERVICES, AND BE UNDERSTOOD
WITHIN AND OUTSIDE OF OUR
COMMUNITIES, TO BE DELIBERATE
NAMING WHETHER WE ARE AND R WE O
WE'RE WORKING WITH ANYONE ELSE?
WE'LL MOVE TO THE NEXT QUESTION.
DENA GASSEN?
>>I'LL LET MORENIKE GO BEFORE
ME.
>>GO AHEAD, MORENIKE.
>>MORENIKE SENT THEIR QUESTION
OVER CHAT, A COMMENT.
THEY SAY I DON'T HAVE TOO MUCH
TO SAY BECAUSE I'M TOO EMOTIONAL
TO GATHER MY THOUGHTS.
PEOPLE OFTEN SAY WHY DO YOU HAVE
TO KEEP BRINGING UP RACE.
WE'RE TALKING ABOUT AUTISM.
THEY SAY RACE HAS NOTHING TO DO
WITH IT.
IT'S FRIGHTENING EVEN NOW PEOPLE
DON'T UNDERSTAND HOW FACTORS ARE
SO DEEPLY INTERTWINED WHERE
PEOPLE OF THE VOCAL MAJORITY WE
DON'T HAVE THE LUXURY OF
IGNORING CULTURAL ASPECTS, THEY
WANT TO THANK BRIAN, JILL,
CAMILLE , LYDIA AND CRYSTAL FOR
MAKING MYSELF AND MY CHILDREN
VISIBLE.
YETTA SENT A COMMENT THROUGH.
SAYING LYDIA, YOU'RE 100%
CORRECT, THINK ABOUT THE FACT
WE'RE PRIVILEGED TO HAVE A SEAT
AT THE TABLE AND IT'S OUR DUTY,
THEY BELIEVE, TO SUPPORT OUR
COMMUNITIES.
>>THANK YOU FOR THOSE COMMENTS.
>>MORENIKE, THANK YOU FOR THE
COMMENT.
I WANT TO RESPOND.
IT WAS BROUGHT UP WITH THE ISSUE
OF STIGMA TO TALK ABOUT HOW
THESE ISSUES OF RACE AND
DISABILITY ARE INTERTWINED AND
SHOULD BE THOUGHT OF TOGETHER.
I WANT TO CREDIT DR. ELIZABETH
MORGAN, BROUGHT UP IN ANOTHER
MEETING YETTA HOSTED FOR HER
GROUP.
DR. MORGAN REMINDED ISSUES OF
STIGMA IN PARTICULAR FOR THE
BLACK COMMUNITY ARE ROOTED IN
HISTORICAL ISSUES THAT BLACKNESS
ITSELF WASN'T THOUGHT OF AS A
DISABILITY, HOW PEOPLE MEASURED
THE SKULL SIZES OF BLACK PEOPLE
TO SUGGEST THEY WERE LOWER IN
INTELLIGENCE, SO THE RESULTING
STIGMA WE SOMETIMES SEE FROM
RACIALIZED AND MINORITIZED
COMMUNITIES ARE OFTEN
HISTORICALLY ROOTED IN OTHER
ISSUES.
AND SO THIS ISSUE OF HOW
IDENTITY AND DISABILITY AND RACE
ALL INTERSECT, IT REALLY IS
INTERTWINED AND CAN'T BE
DIVORCED BECAUSE THOSE
IDENTITIES ARE AFFECTING
EXPERIENCES WE'RE HAVING AND
OUTCOMES THAT PEOPLE ARE ABLE TO
REALIZE OR NOT REALIZE.
THAT'S JUST AN EXAMPLE HOW THESE
ISSUES REALLY ARE ROOTED IN THE
LARGER CONTEXT OF OUR SOCIETY.
THANK YOU FOR THE COMMENT,
MORENIKE.
>>WE TALKED ABOUT THIS ON
PODCAST, FOUR INDIVIDUALS, TWO
WERE HOCHUNK NATIONS TALKING
ABOUT THEIR NATION, JOURNEYS AND
STIGMA.
NATIVE AMERICANS HAVE THE
HISTORICAL TRAUMA LENS, ONGOING
TRAUMA BECAUSE OF THE FACT
PEOPLE DON'T RECOGNIZE IT'S
STILL AN ISSUE.
THAT IT'S STILL ONGOING.
THAT IT STILL MATTERS.
IT'S ONGOING.
>>THIS IS LYDIA.
THIS IS TRUE ACROSS ALL
NEGATIVELY RACIALIZED
COMMUNITIES FOR BOTH CULTURALLY
AND HISTORICALLY SPECIFIC
REASONS, AND BECAUSE OF THE WAYS
IN WHICH AS I TEACH MY OWN
STUDENTS IN MY COURSES ON
DISABILITY AND RACE AND THE
HISTORIES OF DISABILITY AND RACE
IN THIS COUNTRY ARE
CONCEPTUALIZATIONS OF WHITENESS
AND ABLENESS AND HEALTH, DEEPLY
INTERTWINED.
AND ALWAYS HAVE BEEN.
WHETHER THAT IS IN EAST ASIAN
IMMIGRANT FAMILIES, FEELING A
DRIVE TO PURSUE SO-CALLED
EXCELLENCE IN ORDER TO BE SEEN
AS SUFFICIENTLY WELL BEHAVED AND
COMPLIANT AND PARTICIPATORY, IN
WHITE STRUCTURES, WHETHER THAT'S
RESISTANT DR. BOYD SPOKE ABOUT
IN BLACK COMMUNITIES TO SPEAKING
ABOUT DISABILITY OPENLY OR AS
DR. HERNANDEZ WAS DISCUSSING IN
NATIVE COMMUNITIES ACROSS
DIFFERENT TRIBAL NATIONS AND
COMMUNITIES THAT WE EXPERIENCE
THIS EXPECTATION AND PRESSURE TO
DISAVOW DISABILITY AND TO
DISASSOCIATE AND DISTANCE
OURSELVES FROM DISABILITY IN
COMMUNITIES OF COLOR BECAUSE OF
THE WAYS IN WHICH ABLENESS
AND
WHITENESS ARE INTERTWINED AND
MAY INTERNALIZE IF WE CATEGORIZE
AND ACCEPT, IT'S INTERNALIZING A
WHITE AND COLONIZER LENS OR
FRAMEWORK FOR OUR PEOPLE AND
COMMUNITIES.
AND IN REALITY, IT IS DISABLED
PEOPLE OF COLOR WHO ARE
RESISTING THIS TYPE OF ABLEIST
PREJUDICE AND THE IMPACT THAT IT
HAS INTERGENERATIONALLY IN OUR
COMMUNITIES AS WELL AS OUR
ABILITY TO SEEK REDRESS AND
JUSTICE.
>>I WOULD ADD THAT IT'S
INTERESTING THE WAY PEOPLE OF
COLOR AND PEOPLE WITH
DISABILITIES OFTEN HAVE TO GO
ABOVE AND BEYOND TO PROVE BASIC
HUMANITY, EVEN GOING TO BACK TO
SLAVERY, IN ESSENCE PROVE THEY
WERE HUMANS SLAVES WROTE SLAVE
NARRATIVES.
THEY HAD TO LITERALLY WRITE
THEMSELVES INTO HUMANITY.
ALSO IN TERMS OF DISABILITY AND
RACE, IT'S ALSO THAT, YOU KNOW,
BECAUSE OF THIS HISTORIC
SYSTEMIC RACE INCH AND -- RACIM
AND REDLINING, DECREASES ACCESS
TO HEALTHY FOOD, MAKES THEM MORE
LIKELY TO BE EXPOSED TO
POLLUTANTS, THEY ARE MORE LIKELY
TO BE DISABLED OR TO HAVE
DISABILITY EXACERBATED BECAUSE
OF BASICALLY RACISM AND NATURAL
AND PHYSICAL AND BUILT
ENVIRONMENT.
>>THANK YOU FOR THE GREAT
COMMENTS.
DENA GASSNER, YOUR HAND IS UP.
>>THANK YOU.
>>I WANTED TO THANK EVERYBODY.
I DO WANT TO HIGHLIGHT ONE THING
THAT WAS MISSED TWICE TODAY.
WE DIDN'T DISCUSS IT THIS
MORNING, NEED TO DISCUSS IT NOW.
THAT IS THAT THE PREVALENCE
RATES OF IDENTIFICATION OF GIRLS
ON THE AUTISM SPECTRUM IS THE
MOST MARGINALIZED SUBSET OF
AUTISTIC PEOPLE.
AND THEN WHEN YOU ADD MULTIPLE
MARGINALIZATIONS THAT INCLUDE
RACE OR ETHNIC DIFFERENCES ON
TOP OF THAT, IN DUE RESPECT WHEN
WE'RE NOT INTENTIONALLY
RECRUITING GIRLS WHEN WE HAVE A
LOW SAMPLE SIZE DOES A
DISSERVICE TO THE ENTIRETY OF
THE COMMUNITY, SUGGESTING
AUTISTIC GIRLS AND WOMEN AND
SOME STUDIES WE LOOKED AT TODAY
WOMEN OF COLOR, IT'S AN ERASURE
AND DOESN'T CONSIDER WHAT'S ON
THE BACK OF THESE AUTISTIC
WOMEN.
I WANT TO SAY THAT WE -- YOU
KNOW, THESE NUMBERS ARE REALLY
DOING A DISSERVICE TO THE IDEA
THAT WE CAN INTENTIONALLY
RECRUIT AND FIND AUTISTIC WOMEN
TO STUDY.
WE HAVE GATE KEEPERS WHO HAVE
ACCESS TO OUR COMMUNITY ALL THE
TOP PEOPLE RIGHT HERE ON THE
SCREEN.
AND SO IF WE NEED TO FIND PEOPLE
WHO MEET THAT CRITERIA AS A
MARGINALIZED WOMAN WE HAVE
NETWORKS AND NEED TO TEACH
RESEARCHERS HOW TO CAPITALIZE ON
THEM.
I WANT TO EMPHASIZE, IF YOU
WILL, THE ROLE OF ADMINISTRATIVE
BURDEN THAT IS LAYERED ON TOP OF
ACCESSING SERVICES FOR THE
ENTIRETY OF THE COMMUNITY BUT,
AGAIN, IS MORE COMPLICATED WHEN
ENGLISH IS NOT YOUR FIRST
LANGUAGE, SYSTEMS THAT ARE
ALMOST DISBELIEF THAT PEOPLE ARE
CONNING THEM OUT OF MONEY LIKE
IT'S THEIR ONLY PERSONAL MONEY
INSTEAD OF GIVING ACCESS TO
AMOUNT OF MONEY AND RESOURCES
THEY NEED TO LIVE.
PEOPLE IN POVERTY HAD A 20-YEAR
SHORTER LIFE EXPECTANCY AND MANY
AUTISTIC PEOPLE AS LYDIA POINTED
OUT ARE LIVING AT THE BRINK OR
BELOW THE FEDERAL POVERTY LINE
AT ALL TIMES.
WE JUST HAVE GOT TO DO BETTER,
I'M PREACHING TO THE CHOIR BUT I
WAS DISTRESSED WE DIDN'T TALK
ABOUT THE RATES ON FEMALES.
THANK YOU.
ANY RESPONSES OR COMMENTS ON
THAT?
>>THIS IS LYDIA.
I'D BE HAPPY TO SHARE RESOURCES
ON GENDER AND RACIAL DISPARITIES
AND AUTISTIC PEOPLE AS WELL.
SO THANK YOU FOR RAISING THAT,
DENA.
>>I RUN PSYCHIATRIC HOSPITALS
IN MY DAY JOB.
THE NUMBER OF FEMALES THAT I GET
THROUGH THE DOOR THAT DO NOT
HAVE A FORMAL DIAGNOSIS AND
EVERYTHING BUT THE KITCHEN SINK
IS ALARMING, WE NEED TO DO A
WHOLE TREMENDOUS AMOUNT OF WORK
ON THAT PARTICULAR ISSUE.
>>THANK YOU.
I'M A SOCIAL WORKER BY TRAINING.
IN MY DAY JOB I RUN AN ADULT
SUPPORT GROUP, LAST MONTH WE HAD
35 WOMEN ATTEND, ONE DIAGNOSED
BEFORE AGE 3, ONE DIAGNOSED
BEFORE AGE 30.
EVERYBODY ELSE WAS IN THEIR LATE
30s OR 40s OR 50s OR
60s.
I REALIZED THERE WAS NO
DIAGNOSIS AVAILABLE TO THAT
SEGMENT OF THE POPULATION BUT
WE'RE DOING THE SAME INJUSTICE
TO THE NEW AND YOUNGER PEOPLE
THAT ARE COMING ABOARD.
SO THANKS FOR AFFIRMING DR.
HERNANDEZ THAT IN THE COMMUNITY
WE KNOW THAT NUMBER CAN'T BE
ACCURATE.
>>JUST TO UNDERSCORE THE POINT
I HAD A BLACK MOTHER OF AN
AUTISTIC GIRL REACH OUT TO ME
AND ASK ME TO SEND HER RESEARCH,
BLACK WOMEN OR GIRLS THAT WERE
AUTISTIC, I COULDN'T POINT TO
ANY, THERE HAVE BEEN ONE OR TWO
SMALL SCALE STUDIES BUT NOT A
LOT.
>>THERE'S NO EXCUSE FOR A
DISPARITY BECAUSE SOME OF THE
RESEARCH ON AUTISM, EARLY
RESEARCH ON AUTISM, MOST FAMOUS
BOOK WERE WRITTEN BY WOMEN,
JESSIE CLAIBORNE, HER MOTHER
WROTE TWO BOOKS WITH RAISING HER
DAUGHTER WITH AUTISM, TEMPLE
GRANDEN, DONNA WILLIAMS, WILLFUL
BLINDNESS TO NOT SEE WOMEN CAN
OBVIOUSLY HAVE AUTISM.
>>I CAN SPEAK FROM A CULTURAL
STANDPOINT, IN THE BLACK
COMMUNITY, IT'S DIFFICULT FOR
FAMILIES TO COME TO TERMS WITH
THEIR DAUGHTERS POSSIBLY BEING
DIFFERENT BECAUSE IN THE BLACK
COMMUNITY THE BLACK WOMAN IS THE
ROOTS TO THE TREE.
SHE'S SUPPOSED TO BE ABLE TO DO
EVERYTHING AND ANYTHING.
AND FROM THE TIME WE'RE BORN
WE'RE GROOMED TO DO ANYTHING AND
EVERYTHING.
I THINK IT'S JUST A CULTURAL
THINK, AT LEAST FOR BLACK
FAMILIES, AND I THINK THAT'S THE
PROBLEM THAT WE DON'T TALK ABOUT
IT ENOUGH.
IF WE DO IT, WE'LL GET THOSE
UNICORNS, BUT IT'S A COMMUNITY
EFFORT IN REGARDS TO MAKING
THESE COMMUNITIES OF COLOR FEEL
COMFORTABLE ENOUGH IN SAYING WHO
THEIR CHILDREN ARE.
SO ONE OF THE THINGS THAT WE DO
IN OUR TRAINING IS THAT WE BRING
IN PEOPLE OF COLOR, WE BRING IN
BLACK FACILITATORS, SO THAT OUR
PARENTS AREN'T CLOSED OFF, THEY
BECOME RELAXED WITH THEM AND
THEY ASK THE RIGHT QUESTIONS.
AND FROM THAT, THEY GAIN A SENSE
OF EMPOWERMENT.
THEY SEE THERE'S PROVIDERS THAT
CAN SERVICE THEM THAT LOOK LIKE
THEM THAT ARE OUT THERE
SOMEWHERE, AND THEY ALSO HAVE A
COMMUNITY IN THESE CLASSES THAT
WE HAVE AND FACILITATE ON
SATURDAYS.
THEY HAVE A COMMUNITY OF PEOPLE
SO THEY KNOW THEY ARE NOT ALONE.
AND WE ALSO BRING IN
SELF-ADVOCATES.
MOST OF THE TIME IT'S A FEMALE
SELF-ADVOCATE WHO IS TALKING
ABOUT HER EXPERIENCE.
WE DO THAT PURPOSEFULLY BECAUSE
LATELY WE HAVE A LOT OF PARENTS
IN OUR GROUPS WHO HAVE YOUNG
WOMEN.
SO, I JUST WANTED TO BRING THIS
UP BECAUSE WE ARE ADDRESSING
THAT PARTICULAR ISSUE, BUT YOU
HAVE TO UNDERSTAND EVERYTHING
TAKES TIME AND YOU HAVE TO GIVE
THE COMMUNITY COMFORTABLE -- GET
THE COMMUNITY COMFORTABLE FIRST
WHO THEY ARE AND WHO THEIR CHILD
IS BEFORE YOU CAN REALLY MAKE
ANY SIGNIFICANT CHANGES FOR THE
FUTURE.
OR YOU'LL CONTINUE TO HAVE THAT
OLDER SELF-ADVOCATE THAT'S 20
AND UP.
>>IF I COULD BUILD ON THAT IN
THE LATINO COMMUNITY WHETHER WE
DO A LOT OF RESEARCH WITH A
LARGE NUMBER OF LATINO FAMILIES,
WE DO SEE FAMILIES WITH GIRLS
WITH AUTISM, BUT OFTEN WE SEE
THE SAME PROPORTION IN THE
GENERAL, IN THE WHITE OR
WHATEVER POPULATION RESEARCH.
AND SO I THINK IT GOES EVEN
DEEPER THAN CULTURE, GOES TO THE
CULTURE OF OUR SOCIETY, RIGHT?
BECAUSE I THINK GIRLS ARE TAUGHT
TO INTERNALIZE THEIR PROBLEMS,
AND A LOT OF TIMES -- I HAVE TWO
KIDS WITH ADHD, A GIRL AND BOY.
THE GIRL, HER ADHD WASN'T
RECOGNIZED UNTIL LATER, DOESN'T
EXHIBIT AS BEHAVIORAL
CHALLENGES, MAYBE IT DID MY SON,
RIGHT?
YOU HAVE A SIMILAR PATTERN IN
SOCIETY WHERE GIRLS ARE TAUGHT
TO INTERNALIZE, MAYBE IF THEY
HAVE SOME SORT OF MELTDOWN
RELATED TO SENSORY ISSUES OR
WHATEVER IT MIGHT GET
INTERPRETED DIFFERENTLY, RIGHT?
SO IT'S A SOCIETAL PROBLEM THAT
KIND OF REPLICATES IN DIFFERENT
COMMUNITIES AS WELL.
>>I WOULD LIKE TO HIGHLIGHT
SOMETHING SAID THROUGHOUT THE
DAY, WHO IS IN THE ROOM WHEN WE
ARE CREATING THESE INSTRUMENTS,
WHO IS IN THE ROOM?
OFTENTIMES IT'S NOT PEOPLE THAT
LOOK LIKE THOSE ON THIS PANEL.
>>I WONDER WHO IS THE ONUS
BEING PUT ON TO BE DIAGNOSED AND
RECOGNIZED?
THE IDEA GIRLS AREN'T DIAGNOSED
BECAUSE THEY ARE SOMEHOW HIDING,
ISN'T THE DOCTOR'S JOB TO
ASCERTAIN THAT?
I MEAN, IT'S NOT THE PATIENT'S
JOB TO SAY, THIS IS WHAT'S WRONG
WITH ME, IT'S THE DOCTOR'S JOB.
IT'S LIKE BLAMING THE PATIENT..
WAIT A SECOND, WHOSE
RESPONSIBILITY IS IT TO SEE THIS
PERSON HAS AUTISM, EVEN IF THEY
DON'T FIT WHATEVER PROFILE I
HAVE IN MY HEAD.
ISN'T THAT THE DOCTOR'S JOB?
I'M INTERESTED, WHO WE'RE
BLAMING AND WHO HAS
RESPONSIBILITY.
I FIND THAT CURIOUS.
>>SO I'M NOT NECESSARILY
BLAMING ANYBODY BUT I DO KNOW
CULTURALLY IT'S DIFFICULT.
I TALK TO PARENTS WHO HAVE
FOUGHT TOOTH AND NAIL AGAINST A
DIAGNOSIS FOR THEIR DAUGHTER.
JUST TOOTH AND NAIL FOR A
DIAGNOSIS FOR THEIR CHILD,
PERIOD.
AND SO WHEN I SAY THAT PARENTS
NEED TO EMBRACE -- I DON'T KNOW
WHAT AN AUTISTIC ADULT GOES
THROUGH BUT WHAT I DO KNOW THAT
THESE AUTISTIC CHILDREN ARE
BEING PUSHED TO THE SIDE BECAUSE
OF THEIR PARENTS.
THEIR PARENTS' VIEWS.
AND WE TRY TO EDUCATE PARENTS SO
THEY BETTER UNDERSTAND WHY IT'S
IMPORTANT TO BE IDENTIFIED, TO
GET A DIAGNOSIS AND SUPPORT
THEIR CHILDREN THE RIGHT WAY.
SO WHEN I TALK ABOUT -- WHEN I
SAY THIS IT'S NOT TO BLAME THE
VICTIM BECAUSE THE VICTIM,
THERE'S BEEN VICTIMIZATION
THROUGH SYSTEMIC RACISM, THAT'S
WHAT'S CONDITIONED BLACK PEOPLE,
MY CULTURE, TO NOT EMBRACE
MENTAL HEALTH ISSUES, SOMETIMES
EVEN DIABETES, THEY WILL KEEP
EATING CANDY.
IT'S JUST A THING.
WE'RE HERE TODAY TO, NUMBER ONE,
GET MORE RESOURCES FOR OUR
COMMUNITIES, RESPECTIVE
COMMUNITIES, AND NUMBER TWO, END
STIGMATIZATION OF AUTISM.
>>I WASN'T REFERRING TO YOU.
I'M NOT SAYING YOU'RE BLAMING
THE VICTIM.
>>I KNOW BUT I WANT TO MAKE
THAT POINT.
I TOTALLY GET WHAT YOU'RE
SAYING.
YOU MAKE WONDERFUL POINTS.
I GET IT.
BUT THERE'S OTHERS OUT THERE WHO
ARE WATCHING THIS, I WANT TO
JUST BE CLEAR ON, YOU KNOW, THE
HURDLES THAT THESE COMMUNITIES
OF COLOR HAVE TO CLEAR.
DR. HERNANDEZ CAN SAY JUST WHAT
I SAID.
THEY HAVE TO CLEAR THESE HURDLES
BECAUSE YOU'RE TELLING THEM, OH,
HE OR SHE IS DOING SOMETHING
THAT IS PRESENTING AS AUTISTIC.
AND THAT PARENT WILL TELL YOU,
NO, THEY AREN'T.
AND A DOCTOR, TO BE HONEST, A
DOCTOR CAN'T MAKE A PARENT
ACCEPT A DIAGNOSIS.
THAT'S THE ONLY THING I WANTED
TO -- DR. HERNANDEZ MIGHT BE
ABLE TO SPEAK ON THAT MORE.
>>ABSOLUTELY.
I THINK IT'S A COUPLE THINGS.
ONE, IT'S A PERFECT STORM.
IT'S ALSO -- MY OWN JOURNEY,
IT'S ALSO ACCEPTING AND GOING
THROUGH THE PROCESS BECAUSE I
WAKE UP EVERY DAY KNOWING WHO I
AM IN TERMS OF WHAT COLOR I AM,
MY POSITION BASED OFF THAT IN
LIFE.
IN MY SON I THINK ABOUT, GOSH,
HE'S ALREADY GOING TO STRUGGLE,
THEY ARE GOING TO JUDGE HIM.
OH MY GOSH.
IT'S AN EVERYDAY THING, IT'S
HARD WHEN I TALK TO OTHER
PARENTS WILL THIS JOURNEY AND A
LOT OF MIXED EMOTION, SOME ARE
ANGRY, CRYING, GRIEVING, IT'S SO
DIFFERENT FOR SO MANY PEOPLE BUT
KNOWING WHAT I KNOW AND KNOWING
THE FOLKS I'VE TALKED TO IT'S
REALLY HARD TO SOMETIMES WANT
THAT SPOTLIGHT WHEN YOU ALREADY
FEEL THAT SPOTLIGHT OF JUDGMENT.
IT'S NOT SOMETHING TO BE JUDGED.
I'M NOT SAYING THAT.
I'M SAYING THAT'S HOW I FELT,
ESPECIALLY EARLY ON, IS MY SON'S
ALREADY GOING TO FACE THE WORLD
OF CHALLENGES BECAUSE OF WHO HE
IS IN TERMS OF HIS COLOR AND
WHERE HE COMES FROM.
NOW ADDITIONAL LAYER IN I
ACKNOWLEDGE AND ACCEPT THIS AND
THIS IS HIS PATH FORWARD.
IT TOOK A LOT OF EMOTIONAL WORK
TO GET OVER MY OWN MIND AND TO
FIGHT BUT THERE'S NEVER A DAY
THAT GOES BY WHERE SOMEBODY
ISN'T JUDGING.
>>I HAD THIS CONVERSATION WITH
MY STUDENTS LAST NIGHT, MANY
DISABLED ADULTS GO THROUGH THIS
AS WELL.
REALIZING THAT IF YOU HAVE NOT
HAD ANOTHER DISABILITY CORRECTLY
IDENTIFIED AND DIAGNOSED
EARLIER, OR YOU ARE ACQUIRING A
NEW CONDITION, FOR EXAMPLE,
ONSET OF AN AUTOIMMUNE DISEASE
THAT OCCURS LATER IN LIFE, THAT
MANY PEOPLE STRUGGLE WITH THE
INTERNALIZED ABLEISM BECAUSE
THAT'S WHAT THAT BOILS DOWN TO,
IT'S ABLEISM, IT'S FEAR OF THE
IMPACT OF ABLEISM OF REALIZING
THAT THERE IS ANOTHER EXPERIENCE
YOU HAVE THAT WILL RESULT IN
SOCIETAL DISCRIMINATION, AND
THAT THAT COULD TRANSLATE INTO
POOR HEALTH OUTCOMES, POOR
ECONOMIC OUTCOMES, VERY REAL
CONSEQUENCES.
FOR THOSE IN MARGINALIZED
COMMUNITIES THAT TAKES THE FORM
IF I CAN SHIELD MYSELF FROM
HAVING TO ACCEPT OR NAME OR
CLAIM DISABILITY AS PART OF AN
EXPERIENCE, THEN PERHAPS THAT
WILL DECREASE THE AMOUNT OF
PREJUDICE AND DISCRIMINATION
THAT I OR MY FAMILY MEMBER WILL
EXPERIENCE.
AND SO WHEN DISAVOWING
DISABILITY WE BELIEVE FALSELY
THAT THAT WILL FREE US FROM OR
PROTECT US FROM DISCRIMINATION
WHEN IT'S NOT TRUE, BIOLOGY DOWN
TO INTERNALIZED ABLEISM AS WELL
AS FEAR OF THE CONSEQUENCES OF
ABLEISM.
WHETHER SOMEBODY ACCEPTS A
DIAGNOSIS OR NOT, THE DISABILITY
IS THERE.
THE ABLEISM WILL BE THERE.
THE DISCRIMINATION WILL BE
THERE.
SO OUR CHARGE HAS TO BE HOW WE
CAN TRANSFORM OUR SYSTEMS TO
REDUCE THE HARM OF ABLEISM FROM
OUR POLICIES AND PRACTICES.
I KNOW THERE HAVE BEEN SEVERAL
MEMBERS OF IACC WHO HAVE BEEN
WAITING TO COMMENT OR ASK
QUESTIONS.
>>GREAT DISCUSSION AMONG
PANELISTS.
WE WILL TAKE A QUESTION FROM
SCOTT ROBERTSON.
>>THANKS, EVERYBODY.
I FIND IT VERY VALUABLE IN TERMS
OF THE DISCUSSIONS AND
PRESENTATION, AND SOCIAL
JUSTICE-RELATED ISSUES AND
INTERSECTIONALITY ON RACE AND
HIT, ALIGNING ON DIVERSITY,
EQUITY, AND INCLUSION, WHAT
AGENCIES HAVE BEEN DOING RIGHT
NOW AND VERY HELPFUL TO HEAR
MORE INSIGHT FROM RESEARCH
PRACTICE AND ADVOCACY IN THIS
SPACE.
WE'VE MADE A PRIORITY HERE AT
THE DEPARTMENT OF LABOR ON OUR
EMPLOYMENT PROJECT FOR AUTISM,
RESEARCH SUPPORT SERVICES FOR
EMPLOYMENT OF YOUNG ADULTS ON
THE AUTISM SPECTRUM.
ACCESS AND SUPPORT NEEDS
DIVERSITY THERE.
WHAT I'M WONDERING ON THE
WORKFORCE END OF THINGS I KNOW
THAT IN THE PRESENTATIONS IT
MENTIONED LACK OF EDUCATOR
DIVERSITY, LACK OF DIVERSITY IN
THE WORKFORCE, IN TERMS OF FOR
SUPPORT AND SERVICES, FOR
EMPOWERING GREATER ACCESS AND
SUPPORT NEEDS AND SERVICES
ACCESS FOR AUTISTIC CHILDREN.
DO YOU HAVE SUGGESTS ABOUT THE
WORKFORCE, GOVERNMENT AND
PARTNERSHIPS AND COLLABORATIONS?
I SAW THAT HIGHLIGHTED ON THE
WORKFORCE DIVERSITY, WONDERING
IF THERE'S SOMETHING WE COULD BE
DOING OR AMPLIFY SOMETHING WE'RE
ALREADY DOING.
THANKS.
>>THIS IS LYDIA.
THANK YOU FOR THAT QUESTION,
SCOTT.
THAT ISSUE IS ONE I RAISE
CONSISTENTLY, WE DO NOT HAVE
THAT MANY OPENLY DISABLED LET
ALONE SPECIFICALLY OPENLY
AUTISTIC PEOPLE CONDUCTING
RESEARCH SPECIFICALLY AS P.I.s
OR CO-P.I.s OF STUDIES ABOUT
ISSUES THAT DIRECTLY AFFECT US.
WE DO NOT HAVE ENOUGH DISABLED
PEOPLE OPENLY AND OPEN ABOUT
BEING DISABLED, WHO ARE IN
POSITIONS MAKING DECISIONS IN
DIRECT SERVICES, WHETHER THAT IS
COMMUNITY BASED SERVICES OR NOT.
WE DON'T HAVE ENOUGH PEOPLE
OPENLY DISABLED WHO ARE THE ONES
IN EDUCATIONAL LEADERSHIP OR WHO
ARE RUNNING WORKFORCE
DEVELOPMENT PROGRAMS EVEN.
THERE ARE VANISH WILL GO FEW OF
US, FEWER THAN 10% IN THE ZOOM
RIGHT NOW.
THAT'S A PROBLEM.
YOUR QUESTION RAISES THE SAME
KINDS OF SYSTEM ISSUE ISSUES AND
PIPELINE ISSUES THAT COME UP
AROUND ALL CONVERSATIONS ON
TRAINING, SUPPORTING ACADEMIA,
HIRING, PROMOTION, PROFESSIONAL
DEVELOPMENT FOR PEOPLE FROM ALL
MARGINALIZED COMMUNITIES.
AND I PRACTICE SPECIAL EDUCATION
LAW FOR A TIME, AND I WAS ONE OF
FEW OPENLY AUTISTIC ATTORNEYS
WHO WAS PRACTICING SPECIAL
EDUCATION LAW WORKING WITH
STUDENTS WITH DISABILITIES AND
FAMILIES, THAT MATTERED TO THE
CLIENTS THAT I WORKED WITH AND
TO THEIR FAMILIES.
AND YET THAT'S NOT THE NORM,
RIGHT?
AND SO I THINK ABOUT WHAT I'VE
OFTEN REFERRED TO AS A FLEXY
GLASS CEILING IN WORKFORCE
DEVELOPMENT WORLD, AND THIS
MIRRORS CONVERSATIONS AROUND
GENERAL SERVICES FOR PEOPLE WITH
DISABILITY, ALL PEOPLE WITH IDD,
MANY PEOPLE EXPLICITLY
CATEGORIZED AS DEVELOPMENTALLY
DISABLED SHUNTED INTO FOUR Fs
FOR JOBS, FOOD, FLOWERS, FILTH,
AND I FORGET THE FOURTH.
PLEASE TELL ME.
>>FILING.
THAT'S IT.
THANK YOU.
FOOD, FLOWERS, FILTH, FILING,
REFERRING TO TYPES OF JOBS
EXTREMELY LOW PAID AND THAT'S
EVEN FOR THOSE NOT SUBJECT TO
14C SUBMINIMUM WAGE CERTIFICATE
HOLDERS, THEY ARE USUALLY PAID
MINIMUM OR SUBMINIMUM WAGE, AND
CONSIDERED TO BE DEAD END JOBS.
THIS SPECIFIC JOBS PEOPLE WITH
DEVELOPMENTAL DISABILITIES ARE
CONSIDERED HIREABLE FOR, EVEN
FOR PROGRAMS THAT ARE ALLEGEDLY
PROMOTING SUPPORTED EMPLOYMENT
COMPETITIVE INTEGRATED
EMPLOYMENT ARE STILL SHUNTING TO
THE FOUR Fs OR IN OTHER FIELDS
OR SECTORS INTO NONETHELESS
ENTRY LEVEL POSITIONS WITH NO
EXPECTATION FOR PROMOTION.
FOR EXAMPLE, I SPOKE TO SOMEBODY
IN THE LAST FEW YEARS WHO IS AN
EMPLOYEE WITH DEVELOPMENTAL
DISABILITIES WORKING FOR THE
FEDERAL GOVERNMENT PAID AT ONE
OF THE LOWEST SCALES, GS 7, AT A
GS 7 PAY RATE, FOR 30 YEARS.
AND THAT'S A PAY RATE THAT'S
INTENDED FOR A TEMPORARY
SEASONAL WORKER, FOR A STUDENT
TRAINEE AGAIN IN A TEMPORARY
POSITION, RATHER THAN TO BE A
CAREER POSITION, AND TO BE PAID
AT THAT SAME GRADE SCALE LEVEL
FOR 30 YEARS INDICATES THAT
ABSOLUTELY NOBODY IN THE AGENCY
FOR WHOM THIS PERSON WAS HIRED
LIKELY AS SPECIAL APPOINTMENT
AUTHORITY BELIEVED THIS PERSON
WAS CAPABLE OR DESERVING OF ANY
SUPPORT FOR ANY PROMOTIONAL
ADVANCEMENT.
FOR THOSE WHO DO HAVE AGAIN THE
CONDITIONAL PRIVILEGE OF PER
SUING ADVANCED DEGREE OR ANY
COLLEGE DEGREE AND PROFESSIONAL
CAREER PATH THE PLEXIGLASS
CEILING REMAINS.
SARAH LEWDMAN COMMENTED
AUTOBIOGRAPHY PEOPLE IN POLICY
ARE OFTEN NOT ABLE TO BE
ADVANCED OUT OF JUNIOR LEVEL
POSITIONS, IT'S INCREDIBLY RARE
FOR AUTISTIC AND PRESUMABLY
OTHER DEVELOPMENTALLY DISABLED
PEOPLE TO BE CONSIDERED FOR
PROMOTIONAL OPPORTUNITY OUT OF
JUNIOR LEVEL POSITIONS, EXCEPT
IN SELF-ADVOCACY ORGANIZATIONS
WHICH ARE LED BY PEOPLE WITH
DISABILITIES BY DEFINITION.
THESE DISPARITIES PERSIST AND OF
COURSE ARE FURTHER EXACERBATED
FOR DISABLED PEOPLE AUTISTIC AND
OTHERWISE WHO BELONG TO OTHER
MARGINALIZED COMMUNITIES.
SO I THINK ABOUT HOW AND WHY
AUTISTIC PEOPLE ARE MORE THAN
EVER MAKING IT TO DOCTORAL
TRAINING BUT NOT TO POSTDOCTORAL
FELLOWSHIPS.
WE'RE MAKING IT TO COLLEGE BUT
NOT TO PROGRAMS THAT ARE
SUPPORTING US FOR PROMOTIONAL
POTENTIAL, MAKING IT INTO JOBS
FOR THOSE THAT ARE ABLE TO BE
EMPLOYED, ONE STATISTICS IS ONLY
30% OF AUTISTIC ADULTS ARE
ACTUALLY EMPLOYED FULL TIME.
SO THOSE THAT MAKE IT TO
EMPLOYMENT WHICH IS STILL MORE
THAN PERHAPS THE CASE 20 YEARS
AGO, ARE NOT MAKING IT TO MIDDLE
MANAGEMENT LET ALONE SENIOR
MANAGEMENT POSITIONS.
WE'RE NOT CONSIDERED LEADERSHIP
MATERIAL.
THAT IS EVEN FEEDBACK I RECEIVED
AT ONE POINT WHEN PURSUING A JOB
OPPORTUNITY FOR A SENIOR LEVEL
POSITION.
THOSE IN A POSITION TO MAKE THE
DECISION DID NOT ENVISION ME AS
AN ORGANIZATIONAL LEADER, EVEN
THOUGH I HAVE 15 YEARS OF
LEADERSHIP EXPERIENCE.
AND THAT IS NOT A COMMENT THAT
LIKELY WOULD HAVE BEEN MADE
ABOUT A PEER WHO IS
NON-AUTISTIC, WHITE, OR MALE.
SO ALL THIS TO SAY THERE ARE
MANY SYSTEMATIC DISPARITIES AT
EVERY STAGE OF EDUCATION,
TRAINING, WORKFORCE DEVELOPMENT,
THAT RESULT IN A LACK OF
AUTISTIC AND OTHER DISABLED
PEOPLE MAKING IT THROUGH
EDUCATIONAL AND TRAINING
PROGRAMS OR STAYING IN
PROFESSIONAL FIELDS WHERE THEY
WOULD HAVE THE OPPORTUNITY TO
MAKE DECISIONS RUN RESEARCH,
PROVIDE SERVICES THAT DIRECTLY
AFFECT AUTISTIC PEOPLE'S QUALITY
OF LIFE AND ABILITY TO
PARTICIPATE IN THE COMMUNITY.
AND I'LL JUST END MY -- I'M
SORRY, LONG COMMENT, WITH
ACKNOWLEDGING THAT FOR EXAMPLE
EVEN FUNDED PROGRAMS ARE NOT
PROVIDING SERVICES TO AUTISTIC
PEOPLE WITH A VIEW WE COULD BE
LEGITIMATE QUALIFIED CREDIBLE
CANDIDATES FOR POSITIONS OTHER
THAN JUNIOR ENTRY LEVEL JOBS.
>>OFTENTIMES THERE'S NOTE
SUPPORT, THEY QUIT BECAUSE OF
THE MENTAL STRAIN AND BURDEN.
A LOT OF THINGS IN TERMS OF
WORKFORCE PIPELINE THE ONUS IS
PUT ON AUTISTIC INDIVIDUAL,
THAT'S NOT OKAY.
IT SHOULD BE A COLLECTIVE.
IT SHOULD BE ABOUT SUPPORTING
THAT PERSON THROUGH THE PROCESS
THAT HISTORICALLY THESE THINGS
WE MAKE THEM GO THROUGH IN TERMS
OF INTERVIEW, RÉSUMÉ, COVER
LETTER, THOSE ARE GROUNDED IN A
LOT OF ABLEIST CULTURE, RIGHT?
SO TEACHING THEM HOW TO DO THOSE
THINGS WE CAN DO THAT.
IT'S PUTTING ON THE ONUS ON THE
INDIVIDUAL AND IT SHOULD BE
SHIFTED TO THE WORKPLACES THAT
SUPPORT THOSE INDIVIDUALS AND
CREATING CULTURES THAT ARE
REALLY TRULY INCLUSIVE.
>>THERE'S THE RESISTANCE TO
ACCOMMODATIONS, EVEN WHEN
REASONABLE.
SOME EMPLOYERS JUST RESIST
ACCOMMODATIONS BECAUSE THEY
DON'T LIKE DOING SOMETHING
DIFFERENTLY.
IT'S INTERESTING THAT DURING THE
PANDEMIC SOMETHING THAT DISABLED
PEOPLE HAVE BEEN FIGHTING FOR,
FOR YEARS, ABILITY TO WORK FROM
HOME AND WORK REMOTELY BECAME
ACTUALLY STANDARD OPERATING
PROCEDURE BECAUSE OF THE
PANDEMIC.
IT COULD BE DONE AND IS USEFUL,
THINKING OUTSIDE THE BOX, NOT
HAVING AN ATTITUDE BARRIER
MAKING ACCOMMODATION.
>>KNOWING WHAT YOU NEED ASK FOR
TO SUCCEED AT WORK.
PEOPLE ARE SO GRATEFUL THEY
DON'T WANT TO ASK FOR OTHER
THINGS TO CONTINUE TO THRIVE.
AND CLIMB THAT LADDER TO GET
PROMOTED OR BE RETAINED.
>>ANOTHER ISSUE THAT COMES UP
IN TARGETED HIRING PROGRAMS FOR
AUTISTIC AND DISABLED PEOPLE
THAT I'VE WITNESSED TIME AND
TIME AGAIN IS THAT WHEN
COMPANIES OR ORGANIZATIONS ARE
MAKING THE SO-CALLED BUSINESS
CASE FOR HIRING WORKERS WITH
DISABILITIES WHETHER AUTISTIC
WORKERS OR OTHERWISE, ONE REASON
THEY STATE THAT WE SHOULD BE
HIRED IS BECAUSE WE HAVE THE
LOWEST ABSENTEEISM RATES, MOST
LIKELY TO SHOW UP ON TIME, TO
STAY LOYAL TO A COMPANY, AND TO
COME TO WORK.
AND I ACTUALLY FIND THAT
REFLECTIVE OF PATTERNS OF
EXPLOITATION AND TRAUMA
ESPECIALLY FOR MULTI-LY
MARGINALIZED PEOPLE.
WE'RE AFRAID WE'LL BE
DISCRIMINATED AGAINST SHOULD WE
LEAVE THAT JOB BECAUSE WE'RE
AFRAID OF RETALIATORY
DISCRIMINATION ON THE JOB IF
WE'RE NOT SEEN AS THE MOST
RELIABLE WORKER OUT OF EVERYBODY
ELSE WHO IS THERE.
AND WE SHOULDN'T HAVE TO BE
SUBJECTED TO EXPLOITIVE AND
THINLY VEILED VARIETY PITY-BASED
REASONS TO HIRE US IN ORDER TO
BE ABLE TO PARTICIPATE IN THE
WORKFORCE AND TO GAIN ECONOMIC
SECURITY.
>>TO NOT GET CREDIT FOR WHAT WE
DO.
IN OTHER WORDS, YOU'RE MAKING ME
THINK OF AN EXPERIENCE WHEN I
WORKED AT A BOOK STORE, BECAUSE
I WAS RELIABLE MY SUPERVISOR
ALWAYS GAVE ME THE EVENING --
FRIDAY EVENING AND SATURDAY
SHIFT BECAUSE SHE KNEW I WOULD
BE THERE.
BUT ON MY EVALUATION SHE GAVE ME
ALL AVERAGE.
EVEN WHEN I SAID, YOU SAY I'M
GREAT CUSTOMER SERVICE, SHE SAID
YEAH, BUT YOU'RE SUPPOSED TO BE
GREAT CUSTOMER SERVICE.
THAT'S STILL AVERAGE.
YOU DON'T GET CREDIT FOR THE
WORK YOU DO BECAUSE LIKE YOU'RE
SAYING, YOU GET EXPLOITED.
IT'S LIKE IT'S EXPECTED OF YOU.
>>I'M GOING TO SKIP TO HARI
BECAUSE I SAW HIS HAND UP AND HE
HASN'T GOTTEN A LOT OF COMMENTS
TODAY.
>>GOOD AFTERNOON.
THIS WAS A VERY MEANINGFUL AND
INFORMATIVE DISCUSSION, THROUGH
THE CHAT.
THANK YOU SO MUCH.
DATA AND DISCUSSION HELPS
SUPPORT AND PINPOINT WHAT WE NEW
RACE/FEMALE DISPARITIES AND
AUTISM SPACE BUT NEED TO SEE
REAL TRANSLATABLE ACTION ON THE
GROUND.
>>THANK YOU FOR THAT COMMENT.
>>I COULD NOT AGREE MORE.
I THINK WE'RE ALL, I'LL SPEAK
FOR MYSELF, TIRED OF CONSULTANT
AT THE THEATER.
THEY INVITE YOU, WANT YOU TO
HEAR ABOUT YOU, BASICALLY CHECK
THE BOX AND ON TO THE NEXT.
>>THEY NEVER FOLLOW UP.
>>CORRECT.
>>I THINK WE'RE READY FOR SOME
ACTION.
>>IVANOVA SMITH.
YOU'RE NEXT.
>>THANK YOU SO MUCH, ALL OF THE
PANELISTS, FOR THIS WONDERFUL
DISCUSSION AND FOR ALL THE
WONDERFUL THINGS YOU SAID.
HARD TO SAY AND TRUE.
ONE QUESTION I HAD WAS WHAT WORK
IS THERE IN PREVENTING
REINSTITUTIONALIZATION AND
THERE'S A LOT OF TALK ABOUT
BRINGING BACK INSTITUTIONS AND I
WORRY THAT WILL IMPACT THE MOST
MARGINALIZED COMMUNITIES FIRST.
AND WHAT THINGS ARE YOU ALL
WORKING ON TO TRY TO PREVENT
THAT.
>>THIS IS LYDIA, THANK YOU FOR
RAISING THE ISSUE, PUSHING TO
BRING BACK INSTITUTIONS AND PUT
PEOPLE WITH DISABILITIES INTO
INSTITUTIONS.
AT THE AUTISTIC PEOPLE OF COLOR
FUND, ONE OF THE REASONS WHY THE
MICRO GRANT PROGRAM, THE CORE
AND FOUNDATION OF OUR WORK, IS
SO IMPORTANT IS BECAUSE SO MANY
AUTISTIC PEOPLE OF COLOR ARE
FACING POTENTIAL EVICTION,
HOMELESSNESS, HOUSING
INSTABILITY, AND OTHERWISE WHICH
ARE ALL RISK FACTORS FOR BEING
DEEMED INSTITUTIONALIZABLE.
AND FACING THE RISK OF OTHER
PEOPLE IN POSITIONS OF POWER,
ESPECIALLY PEOPLE WHO ARE NOT
DISABLED DECIDING PEOPLE IN OUR
COMMUNITY WOULD BE BETTER SERVED
UNDER THE CONTROL OF OTHER
PEOPLE IN AN INSTITUTIONAL
SETTING.
UNFORTUNATELY, WE ARE A
FRONTLINE ORGANIZATION, AND
WE'RE NOT ENOUGH.
WE'RE NOT A SYSTEM OF COLLUSION.
AUTISTIC PEOPLE OF COLOR FUNDS
MICROGRANT PROGRAM DOES NOT
SOLVE CENTURIES, LITERAL
CENTURIES OF ABLEISM AND
POLICIES THAT SUPPORT THE BELIEF
DISABLED PEOPLE DO NOT BELONG IN
PUBLIC LIFE, DO NOT BELONG IN
THE COMMUNITY.
AND DO NOT DESERVE TO LIVE IN
THE COMMUNITY.
AND WE ARE NOT A SOLUTION TO
POLICY PROPOSALS TO SEEK TO
RESTRICT ABILITY TO BE
INTEGRATED INTO THE COMMUNITY.
BUT THAT TYPE OF WORK IS SO
ESSENTIAL AND REMAINS INCREDIBLY
UNDERFUNDED ESPECIALLY FOR THOSE
AT THE MOST RISK OF BEING
TARGETED BY ABUSIVE SERVICE
PROVIDERS AND FAMILY MEMBERS FOR
PLACEMENT IN INSTITUTION AND FOR
LOSING LEGAL ABILITY TO EXERCISE
AUTONOMY AND CONTROL OVER THEIR
OWN CHOICES.
THANK YOU FOR RAISING THAT.
>>THANK YOU.
THERE ARE THINGS THAT ARE BEING
DONE SLOWLY, LIKE FOR INSTANCE
THERE'S A MOVE LIKE FOR INSTANCE
IN MASSACHUSETTS TO PASS WHAT'S
CALLED SUPPORTED DECISION MAKING
AS ALTERNATIVE TO GUARDIANSHIP
TO GIVE PEOPLE WITH DISABILITIES
MORE AUTONOMY.
ALSO, MOVING AWAY FROM
TRADITIONAL MODEL OF THE GROUP
HOME, THERE'S A SELF-DIRECTION.
SO THAT YOU CAN ACTUALLY CHOOSE
WHAT AGENCY YOU WANT TO GO WITH
OR YOU CAN CHOOSE WHAT SERVICES
YOU WANT.
AND ON THE FEDERAL LEVEL, THERE
ARE BILLS FOR INSTANCE LIKE BOB
CASEY OF PENNSYLVANIA INTRODUCED
A BILL TO TO PROVIDE MORE
FUNDING AND SHERYL BROWN OF OHIO
REINTRODUCED SSI.
THERE'S A SLIGHT PARADIGM SHIFT
BUT WE NEED TO PUSH FORWARD AND
STAY ACTIVE BUT -- YEAH.
>>I WILL TAKE A QUESTION FROM
MORENIKE.
>>MORENIKE SENT A COMMENT
THROUGH THE CHAT.
THEY SAY THERE'S A GREAT DEAL OF
RACISM, ABLEISM IN THESE
COMMUNITIES, MISOGYNY IS REAL,
AUTISTIC INDIVIDUALS NEED TO OWN
THE FACT THEY HAVE PROJECTED A
LOT OF EXPERIENCES AND PRIVILEGE
INTO CONCEPT OF NEURODIVERSITY.
FAMILIES OF COLOR HAVE BIGGER
CONCERNS THAN PERSONAL-FIRST
VERSUS IDENTITY-FIRST LANGUAGE,
AND PUZZLE PIECES.
IT ISN'T PEOPLE'S PLACE TO
CHASTISE NON-AUTISTIC PARENTS OF
AUTISTIC CHILDREN OF COLOR, YOU
MIGHT HAVE GOOD INTENTIONS BUT
YOU'RE ACTUALLY DOING MORE HARM
THAN GOOD.
THERE'S A LOT OF LEARNING,
UNLEARNING, HUMILITY THAT NEEDS
TO OCCUR AMONG MANY INDIVIDUALS,
THEY SAY ADDITIONALLY WHY DO WE
ONLY EXIST THEORETICALLY, WHERE
ARE THE BLACK AND BROWN AUTISTIC
PEOPLE, BLACK AND BROWN AUTISTIC
EXECUTIVE DIRECTORS, WHY ARE
OTHER ORGANIZATIONS GIVING GRANT
MOTHER IN SIX OR SEVEN FIGURE
MULTI-YEAR AMOUNTS AND
SUBCONTRACT FOR MARGINALIZED
INDIVIDUALS FOR PENNY, JIM
CROWE-ED INTO ADVISORY ROLES,
NEVER GIVEN OPPORTUNITY TO SHOW
WHAT WE CAN EVEN DO.
>>I HEAR YOU THERE.
I'VE BEEN INVOLVED WITH AUTISM
ORGANIZATIONS THAT WILL ACTUALLY
TALK ABOUT AUTISM OR ASPERGER'S
SYNDROME AS A GIFT, EVEN HAVE ON
THEIR WEBSITE ALL THE HISTORICAL
FIGURES THAT MAY OR MAY NOT HAVE
HAD AUTISM.
BUT THEY THEMSELVES WILL NOT
HIRE AN AUTISTIC PERSON.
BUT THEY WILL BE ASKING
CORPORATE AMERICA TO DO IT BUT
THEY WON'T DO IT THEMSELVES.
TOTALLY INSANE.
THAT'S WHY I'M ACTUALLY
IMPRESSED WHEN I SEE -- I DO SEE
SOME ORGANIZATIONS THAT DO PUT
THEIR MONEY WHERE THEIR MOUTH
IS, AND AT LEAST HIRE DISABLED
PEOPLE LIKE THE INSTITUTE FOR
COMMUNITY INCLUSION AT UMass
BOSTON.
I FOUND THAT FRUSTRATING, ALMOST
MADDENING, THEY WON'T HIRE AN
AUTISTIC PERSON.
THEY JUST WON'T.
>>THIS IS LYDIA.
IT IS SIMULTANEOUSLY TRUE THE
ORGANIZATIONS THAT PURPORT TO BE
WORKING ON ADVOCACY AND BREAKING
DOWN BARRIERS ARE OFTEN NOT
MODEL EMPLOYERS, BUT WE ALSO
SHOULD NOT BE SILOED INTO ONLY
WORKING IN AUTISM AND
DISABILITY-RELATED ADVOCACY.
AND THERE ARE MANY OF US WHO ARE
PASSIONATE ABOUT WORKING IN THIS
FIELD.
I'M CLEARLY ONE OF THEM.
I'M HERE.
MANY OF MY COLLEAGUES HERE ARE
AS WELL.
BUT OUR ONLY CAREER PATH, THIS
SHOULD NOT BE THE ONLY AVAILABLE
CAREER PATH TO ESCAPE THE FOUR
Fs.
>>YEAH, EVEN PARTS OF THE
ECONOMY THAT ARE INTERESTED IN
HIRING US, LIKE IN THE PRIVATE
SECTOR, THEY SHOULDN'T ALWAYS BE
TECH OR FINANCE.
WHY AREN'T NEWSPAPERS
INTERESTED?
OR PUBLISHING COMPANIES?
OR BASICALLY THE WHOLE ECONOMY?
EVERYONE SHOULD BE INTERESTED IN
HIRING US BECAUSE WE HAVE ALL
DIFFERENT TYPES OF SKILLS AND
ABILITIES.
WE'RE NOT ALL THE SAME.
>>THANK YOU.
WE'LL TAKE A QUESTION FROM DENA.
>>I WANT TO THANK JILL FOR HER
STATEMENT WHEN SHE SAYS THAT
PEOPLE DON'T EVEN KNOW WHAT TO
ASK FOR.
AND THIS GOES BACK TO, YOU KNOW,
WHAT DR. HERNANDEZ AND I HAVE
BEEN TALKING ABOUT IN REGARD TO
INTENSIVE INTERVENTION SUPPORT
AT THE TIME OF DIAGNOSIS, RIGHT?
WE AS AUTISTIC ADULTS ARE SO
BUSY TRYING TO CONFORM THAT NO
ONE HAS EVER SAT US DOWN AND
HELPED US EXPLORE HOW WE
EXPERIENCE AUTISM AND IN TURN
WHAT ACCOMMODATIONS COULD BE
HELPFUL.
AND ALL OF THAT RESPONSIBILITY
FALLS ON THE AUTISTIC INDIVIDUAL
FOR CHANGE.
AND WHAT WE REALLY NEED TO DO IS
TRANSFORM OUR WORKPLACE
ENVIRONMENTS AND SPEND MORE TIME
MAKING THESE ENVIRONMENTS MORE
NEURODIVERSITY PRESENTLY, MORE
NEURODIVERSITY SAVVY, AND
SUPPORTIVE FROM EVERYTHING FROM
THE ENVIRONMENT TO THE HIRING
PROCEDURES.
AND I DID WANT TO SAY TOO THAT A
BROAD UP HIRING, IT'S STILL
FRAUGHT WITH BURDEN, A LOT OF
BUZZWORDS AND PRESUMED COGNITIVE
CAPACITIES, SO WE NEED TO BREAK
DOWN BARRIERS AND LASTLY TO
CAMILLE, YOU'RE TOTALLY RIGHT.
WE'RE NOT ALWAYS CULTURALLY
SAVVY ABOUT WHY THINGS AREN'T
WORKING.
OF IN YOUR COMMUNITY.
AND I WANT TO KNOW WHAT WE CAN
DO AS A RESEARCH COMMUNITY TO
MAKE SURE WE'RE RESEARCHING THE
PHENOMENON THAT YOU'RE
DESCRIBING, CAMILLE, OR OTHER
PHENOMENONS THAT COME FROM
WITHIN THE COMMUNITY WE NEED TO
HELP CLOSE THAT GAP, IT STARTS
WITH LEADERSHIP LIKE YOURS.
>>THANKS FOR SHARING THOSE
COMMENTS.
ONE MORE THING I DID NOT SAY, WE
ALLUDED TO EARLIER, THIS ISSUE
OF MASKING, AN ANECDOTE FROM AN
EXPERIENCE A FEW WEEKS AGO WITH
A YOUNG BLACK AUTISTIC WOMAN,
REFLECTING ON HIGH SCHOOL
EXPERIENCES, NOW A YOUNG ADULT
LOOKING FOR EMPLOYMENT, BUT
SOMETIMES WHEN THEY ASK ABOUT
WHAT DO YOU NEED TO BE
SUCCESSFUL IN THE MOMENT YOU
CAN'T -- THE AUTISTIC PERSON
CAN'T ANSWER THAT.
THEY NEED TIME TO PROS PROCESSD
THINK.
THEY ASKED HER THAT IN HIGH
SCHOOL.
SHE HAD HER 504 PLAN MEETING,
PAIRS OF EYES WAITING FOR HER TO
SPEAK.
AND SHE JUST COULDN'T ARTICULATE
IN THE MOMENT THOSE NECESSARY
ACCOMMODATIONS AND SUPPORT SHE
NEEDED.
AND SHE FELL SILENT FOR THREE
YEARS BECAUSE ONE OUT OF SIX
TEACHERS EVEN LOOKED AT HER 504
PLAN TO DO SOMETHING AND HELP
HER WITH HER SUPPORT.
BUT THE OTHER FIVE TEACHERS
DIDN'T.
AND SHE FELT SO MUCH PRESSURE TO
NAME THE THING SHE NEEDED
BECAUSE SHE COULDN'T FIGURE OUT
IN THAT MOMENT WHAT SHE NEEDED
SO I THINK THAT'S SOMETHING THAT
HAPPENS A LOT IN TERMS OF LIKE,
WELL, WE THOUGHT TO ASK, YOU
DIDN'T SAY ANYTHING, WE'RE NOT
GOING TO PROVIDE THOSE SUPPORTS.
THAT HAPPENS NOT JUST IN SCHOOLS
BUT ALSO IN THE WORKPLACE AS
WELL.
THANKS, DENA, FOR THAT COMMENT.
>>A COMMENT FROM MORENIKE,
MAKING CORRECTIONS IN WHAT WAS
IN HER COMMENT IN THEIR COMMENT
THAT CAME IN THROUGH STEPHEN.
SO, IT WAS MEANT TO BE BLACK AND
BROWN PRINCIPAL INVESTIGATORS,
NOT PEOPLE.
AND MYSOGYNOIR, SO A COMBINATION
OF MISOGYNY AND PEOPLE OF COLOR.
AND ALSO IT IS NOT NON-PEOPLE OF
COLOR, HASHTAG
#ACTUALLYAUTISTICPEOPLE'S PLACE
TO CHASTISE.
I WOULD LIKE TO HAVE THE
PRIVILEGE OF JUST ASKING YOU A
FINAL COMMENT, WHAT WOULD YOU
LIKE TO TELL MEMBERS OF OUR
COMMITTEE THAT YOU WOULD LIKE TO
SEE HAPPEN AND THINGS THEY MIGHT
BE ABLE TO ACTUALLY TAKE ACTION
ON?
EITHER INDIVIDUALLY IN THEIR OWN
AGENCIES OR AT THEIR
ORGANIZATION OR COLLECTIVELY AS
A COMMITTEE.
>>THIS IS LYDIA.
I KNOW I'VE TAKEN UP A FAIR
AMOUNT OF AIR TIME TODAY SO I'M
GOING TO KEEP THIS VERY BRIEF
BUT THE CAVEAT BEING AS AN
AUTISTIC PERSON WITH ADD,
BREVITY IS NOT MY STRONG POINT.
I APOLOGIZE FOR THAT.
I DO BELIEVE THAT WE NEED MUCH
MORE SUSTAINED FUNDING TO
SUPPORT THE LEADERSHIP AND
LEADERSHIP DEVELOPMENT OF
AUTISTIC PEOPLE WHO COME FROM
SPECIFIC MARGINALIZED
COMMUNITIES THAT CONTINUE TO BE
SIDELINED AND TO BE REMOVED EVEN
FROM CONVERSATIONS LIKE THE ONE
WE'VE HAD TODAY.
AND SPECIFICALLY, I'M THINKING
ABOUT THE MANY PEOPLE CONNECTED
TO THE AUTISTIC PEOPLE OF COLOR
FUND, WHO HAVE BEEN INCARCERATED
IN JAILS OR PRISONS, MANY
AUTISTIC PEOPLE STRUGGLING WITH
ADDICTION TO ALCOHOL AND OTHER
SUBSTANCES, THE MANY AUTISTIC
PEOPLE OF COLOR WHO HAVE
EXPERIENCED OR ARE CURRENTLY
HOMELESS, EITHER FOR SHORT TERM,
BECAUSE OF SHORT-TERM
HOMELESSNESS OR CHRONICALLY
HOMELESS, WHO ARE DEEPLY
COMMITTED TO ADVOCACY WORK BUT
NOT AFFILIATED WITH AN
ORGANIZATION AND DO NOT HAVE THE
RESOURCES OR INSTITUTIONAL
SUPPORT TO FORM A PROJECT THAT
MAY BE COVERED IN THE NEWS OR
INVITED TO PARTICIPATE IN A
MEETING LIKE THIS ONE.
THE AUTISTIC PEOPLE OF COLOR WHO
DO NOT SPEAK ENGLISH AT ALL,
EITHER IN WRITING OR OUT LOUD,
AUTISTIC PEOPLE OF COLOR IN DEAF
AND DEAFBLIND COMMUNITIES, WHO
COMMUNICATE THROUGH HOME SIGN,
HIGHLY LOCALIZED SIGN DIALECTS,
FROM IMMIGRANT AND REFUGEE
COMMUNITIES THAT DO NOT SPEAK
LANGUAGES THAT ARE COMMONLY
RECOGNIZED WITHIN THE UNITED
STATES.
THE AUTISTIC PEOPLE IN NATIVE
AND INDIGENOUS COMMUNITIES, ON
TRIBAL LAND, THE FEDERAL
GOVERNMENT CONTINUE TO FAIL ALL
OBLIGATIONS OVER THE LAST COUPLE
CENTURIES.
THE AUTISTIC PEOPLE OF COLOR WHO
IN IN OTHER WORDS CONTINUE TO BE
SHUT OUT OF AND NOT ELEVATED
EVEN IN CONVERSATIONS THAT ARE
OSTENSIBLY ABOUT BRINGING IN
PEOPLE FROM THE MARGINS.
I SAY THIS KEENLY AWARE AGAIN OF
ALL OF OUR OWN CONDITIONAL
PRIVILEGE OF BEING AGE TO
PARTICIPATE IN THIS CONVERSATION
TODAY.
OF BEING ABLE TO COMMUNICATE IN
WRITING, VERBALLY WITH EACH OF
YOU TODAY.
AND WE DO NOT SPEAK FOR EVERY
SINGLE PERSON IN ALL OF OUR
COMMUNITIES BUT IT IS OUR
RESPONSIBILITY AND A SERIOUS
RESPONSIBILITY AT THAT TO CALL
FORWARD TO BEAR WITNESS AND LIFT
UP THE WORK BELIES EXPERIENCES
AND WISDOM OF ALL OF THE
AUTISTIC PEOPLE WHO ARE NOT AGE
TO BE PRESENT TODAY, NOT PART
THIS CONVERSATION CURRENTLY BUT
WHO SHOULD BE IN THE FUTURE.
AND SO THIS GOES FOR
PROGRAMMATIC GOALS AND OUTCOMES
ACROSS ALL OF THE AGENCIES THAT
ARE REPRESENTED.
OUR WORKFORCE DEVELOPMENT
PROGRAMS, WE'RE THE WORKFORCE
DEVELOPMENT PROGRAMS SUPPORTING
AUTISTIC PEOPLE WHO ARE
RETURNING FROM THE COMMUNITY
FROM JAIL OR PRISON.
WHEN WE'RE THINKING ABOUT
EDUCATION, IN PRIMARY,
SECONDARY, POST-SECONDARY
EDUCATION, HOW ARE WE SUPPORTING
AUTISTIC PEOPLE THAT ARE
RETURNING TO COMPLETE AND
APPRENTICESHIP, TECHNICAL
DEGREE, OR RESEARCH-BASED DEGREE
WHO ARE NOT SUPPORTED, WHO
RECEIVED A CERTIFICATE INSTEAD
OF A HIGH SCHOOL DIPLOMA, WHO
RECEIVED A GED, WHO WERE FORCED
OUT OF NUMEROUS COMMUNITY
COLLEGE OR 4-YEAR UNIVERSITY
PROGRAMS BEFORE BEING ABLE TO
PURSUE A DEGREE, THINKING ABOUT
LET CARE -- HEALTH CARE AND DEY
OF SERVICES, PROPORTIONS LARGE
PROPORTION IN THE TRANSGENDER
COMMUNITY, WHO WERE CONTINUALLY
DEPRIVED OF ACCESS TO CULTURALLY
RESPONSIVE AND GENDER SUPPORTIVE
AND AFFIRMING CARE, WHEN WE'RE
THINKING ABOUT WAYS TO ENSURE
THAT AUTISTIC PEOPLE ARE ABLE TO
ATTAIN ECONOMIC SECURITY ARE WE
CONSIDERING FAMILY CAREGIVERS,
NOT MAKING ENOUGH INCOME TO BE
ABLE TO PAY FOR THEIR OWN
SERVICES, BUT MAKING TOO MUCH
INCOME OR HAVING CAPACITY TO
EARN TOO MUCH INCOME TO QUALIFY
FOR FEDERALLY FUNDED OR
SUBSIDIZED SERVICES.
THIS IS JUST THE TIP OF THE
ICEBERG.
I COULD LITERALLY KEEP TALKING
ABOUT THIS FOR HOURS.
I WILL NOT DO THAT.
THANK YOU FOR THAT QUESTION.
>>I'D LIKE TO JUST HEAR FROM
EACH PERSON ON THE PANEL.
>>I GUESS IF I HAD ANYTHING
SPECIFIC, ONE IS THAT I WOULD
SAY THAT YOU CAN BE THE LEADER,
EITHER AS AN INDIVIDUAL
ORGANIZATIONS OR COMMITTEE
BECAUSE YOU'RE SO CLOSE TO THIS
WORK, YOU HAVE THE EXPERTISE.
YOU COULD SHOW THE REST OF THE
WORLD THE REST OF THE COUNTRY,
THE REST OF SOCIETY, HOW IT
SHOULD BE DONE.
BEST PRACTICES.
SO IF YOU REALIZE THERE'S
SOMETHING THAT NEEDS TO BE DONE,
DO HIRE SOME PEOPLE ON THE
AUTISM SPECTRUM, PEOPLE OF
COLOR, DO INSTITUTE THE PROGRAMS
THAT
LYDIA WAS SUGGESTING.
I SAW THIS THIS MORNING WITH THE
COMMENT TO THE GRADUATION
BOARD, BE MORE ACTIVELY ENGAGED,
LIKE THE BILLS ON CAPITOL HILL,
ADVOCATE FOR THOSE BILLS, JOIN
WITH OTHER ORGANIZATIONS LIKE
THE AUTISM SOCIETY OR AUCD,
ASSOCIATION OF UNIVERSITY
CENTERS ON DISABILITY TO
ACTUALLY PUT YOUR WEIGHT BEHIND
LEGISLATION AND PUBLIC POLICY
THAT COULD MOVE US FORWARD.
THAT WILL BE IT.
>>I'LL GO NEXT.
I WOULD SAY NOT BE AFRAID OF
CHANGE, NOT BE AFRAID TO
CHALLENGES YOURSELVES, SYSTEMS,
STATUS QUO, THE WAY WE'VE DONE
THINGS, BE MORE ACCESSIBLE.
IT SHOULDN'T TAKE SPECIAL
INVITES, SPECIAL MEETINGS,
SPECIAL PATHWAYS TO BE
ACCESSIBLE TO PEOPLE TO HEAR
STORIES, HEAR SITUATIONS, I
THINK ALSO TO GET OUT OF THE
MENTALITY AND TERRITORIAL AND
MENTALITY THAT'S ALWAYS LOOMED
AROUND A LOT OF THESE SYSTEMS.
WE'RE HEADED IN THE RIGHT
DIRECTION MAKING ACTIVE STRIDES
TO REALLY HAVE PEOPLE WITH THIS
TYPES OF LIVED EXPERIENCE BUT
WITH THESE ARE HEARTS AND MINDS
ON COMMITTEES, ON PROJECTS IN
RESEARCH, WE'VE ALSO COME TO
REALIZE THAT THE WAY THAT
SYSTEMS HAVE BEEN STRUCTURED
HAVE BEEN DOING MORE HARM THAN
GOOD SO I WOULD JUST IS A SAY BE
ACCESSIBLE, OPEN, GET OUT OF
YOUR OWN WAY.
>>I WOULD SAY BE MORE
CONSIDERATE.
>>FROM RESEARCH SPECIFICALLY,
FUNDERS ON THE CALL, YOU SHOULD
THINK ABOUT HOW TO INCLUDE THAT
RACE AND ETHNICITY QUESTION AND
REQUIRE EVEN AMONG THE PEOPLE
THAT YOU FUND OR RESEARCH YOU DO
FUND BECAUSE AGAIN OFTENTIMES
THAT VARIABLE IS IGNORED AND NOT
PUBLISHED ON, I ALSO THINK, YOU
KNOW, AGAIN THERE'S BEEN SOME
MOVEMENT OF INCLUDING
SELF-ADVOCATES IN RESEARCH BUT A
LOT OF TIMES SOME RESEARCH
THAT'S OUT THERE AND FORGIVE ME
FOR SAYING THIS, IT'S FOR SHOW
AND THOSE VOICES ARE NOT
INCLUDED OR INCORPORATED INTO
RESEARCH AND REALLY VALUED AS
PART, AGAIN, AS A MEMBER OF
THE -- GIVEN A SEAT AT THE TABLE
IN TERMS OF THEIR INPUT, I ALSO
THINK A LOT ABOUT HOW WE SORT OF
RETHINK SOME OF OUR PARTNERSHIPS
AND SO FOCUSING ON MORE
COMMUNITY PARTNERED RESEARCH SO
HOW WE MIGHT PARTNER WITH
ORGANIZATIONS LIKE CAMILLE'S OR
LYDIA'S IN RESEARCH TO SUPPORT
FUNDING OF THE ORGANIZATIONS
THAT ALSO ELEVATE THEIR WORK,
BECAUSE THE SAD TRUTH FROM AN
ACADEMICS PERSPECTIVE, IT'S THE
GRANT DOLLARS AND PUBLICATIONS
YOU GET SCORED ON OR EVALUATED
ON, AND SO IF WE CAN ELEVATE THE
VOICES OF THE PEOPLE THAT ARE
ACTUALLY DOING THIS WORK AND
PARTNER WITH THEM I WAS THINKING
ABOUT WHAT LYDIA WAS SAYING WHEN
THEY WERE TALKING, THEY CLEARLY
ARTICULATED SO MANY AWESOME
RESEARCH QUESTIONS THAT REALLY
WOULD MAKE AN IMPACT IN TERMS OF
THE SERVICE ACCESS AND DELIVERY
IN THE SYSTEM, SO WE THINK MORE
PARTNERSHIPS IN THE RESEARCH
WORLD AND AGAIN IF YOU'RE
WRITING A FUNDING MECHANISM OR
PAR OR SOMETHING INCLUDING THAT
AS A REQUIREMENT WOULD BE
AWESOME.
AND GOING BACK TO SOMETHING
SOMEONE ELSE SAID EARLIER ABOUT
HAVING MORE BIPOC RESEARCHERS
THAT'S ALSO SOMETHING SOME
FUNDING MECHANISMS CAN CALL OUT
IF YOU ARE ELEVATING A JUNIOR
SCIENTIST OR RESEARCHER OF COLOR
OR TRAINEES OF COLOR, THAT'S ALL
REALLY IMPORTANT TO BUILD THE
WORKFORCE FOR THE RESEARCH SIDE.
THAT'S THE ONLY SIDE I CAN SPEAK
OF.
SORRY, STILL RECOVER FROM A
LINGERING COLD FROM ALL THE
YOUNG CHILDREN.
>>AGAIN TO BUILD ON SOME THINGS
THAT JILL TALKED ABOUT IN TERMS
OF FUNDERS OF RESEARCH, FIRST WE
DO HAVE TO FUND MORE LIFESPAN
RESEARCH ACROSS, YOU KNOW, IN
GENERAL, RIGHT?
THE MAJORITY OF DELORES STILL GO
INTO BIOLOGICAL RESEARCH SO
BEING ABLE TO UNDERSTAND NOT
ONLY CHILDREN BUT ADULTS, AGING
PEOPLE GOING THROUGH THE AGING
PROCESS THAT ARE AUTISTIC AND
HAVE IDDs, BUT THEN MAKING
SURE YOU'RE FEDERAL
GOVERNMENT -- -- MAKING SURE
YOU'RE NARROWING ON BIPOC
RESEARCH, IT'S IMPORTANT TO DO
STUDIES WITH PARTICULAR
POPULATIONS, WHETHER IT'S
CULTURAL ADAPTATION PROJECTS, SO
BRINGING THAT REALLY FOCUSING ON
COMMUNITIES AND WHAT THEY NEED
AND WANT.
AND OF COURSE WHAT JILL SAID
ABOUT THE WORKFORCE, THERE ARE
SOME AGENCIES DOING A BETTER JOB
THAN OTHERS AT IDENTIFYING WHO
IS IN THE WORKFORCE, NIDILRR,
HOW THEY NOT ONLY REQUIRE IN
YOUR PROPOSAL TO INDICATE WHO'S
YOUR TEAM AND WHAT THEIR
IDENTITIES ARE, INCLUDING PEOPLE
WITH DISABILITIES, MAKING SURE
PEOPLE WITH DISABILITIES ARE
RESEARCHERS, AND IN ADDITION TO
RACIAL AND ETHNIC MINORITIES,
THEY WANT YOU TO IDENTIFY HOW
YOU'RE GOING TO RECRUIT, HOW
YOU'RE GOING TO -- FOR POSITIONS
YOU HAVEN'T HIRED YET HOW ARE
YOU GOING TO RECRUIT, WAYS
AGENCIES CAN BORROW IN SOME OF
THOSE PRACTICES.
>>I'LL JUST SAY FIRST SOME OF
THESE ISSUES LIKE STRUCTURAL
RACISM, RACIAL EQUITY, HEALTH
EQUITY, CAN FEEL LIKE BIG
ISSUES.
THAT CAN PREVENT PEOPLE FROM
TAKING ACTION, THESE ARE BIG
ISSUES THAT REQUIRE SOME BIG
FUNDING.
SO WE HAVE TO THINK ABOUT
MECHANISMS A LITTLE BIT
DIFFERENTLY TO ADDRESS
STRUCTURAL RACISM, RIGHT, LIKE
THAT IS A DIFFERENT LANDSCAPE OF
RESEARCH, AND IF WE REALLY WANT
TO CHANGE THINGS, IT MAKES US
HAVE TO THINK ABOUT AND ENVISION
RESEARCH AND HOW IT GETS FUNDED
DIFFERENTLY.
AND ALL THE RESEARCHERS ARE IN
AGREEMENT A LITTLE BIT YOU KNOW
COMMUNITY PARTNER RESEARCH IS
REALLY IMPORTANT BUT IF WE WANT
TO MEANINGFULLY INCLUDE OUR
COMMUNITY PARTNERS, WE HAVE TO
HAVE MECHANISMS IN PLACE TO
REALLY SUPPORT AND FUND THEM.
SO, CURRENT GRANTS, TRYING TO
RESEARCH FUND RESEARCH
OPPORTUNITY, WE DON'T HAVE THE
FUNDS TO REALLY SUPPORT THE WORK
THAT THEY ARE DOING.
CAMILLE AND I HAVE BEEN TRYING
TO DO COMMUNITY PARTNER RESEARCH
BUT I THINK OF CAMILLE AS A TRUE
PARTNER.
AND I WANT TO THINK ABOUT HOW WE
CAN SUPPORT THE WORK HER
ORGANIZATION IS DOING.
SO THINKING ABOUT DIFFERENTLY IF
WE'RE GOING TO MOVE TOWARD THIS
SORT OF DOWN THIS PATHWAY OF
COMMUNITY PARTNERED RESEARCH,
HOW ARE WE PUTTING MECHANISMS IN
PLACE TO REALLY TREAT THEM TO BE
ABLE TO TREAT THEM AS PARTNERS
IN THAT PROCESS.
SO I THINK IT'S NOT JUST THE
AMOUNT OF FUNDING THOUGH, IT'S
THE KINDS OF RESEARCH QUESTIONS
THAT ARE BEING ASKED.
SO, WITH ALL OF OUR IDENTITIES
THERE ARE THINGS THAT LEAD TO
RISK BUT ALSO LOTS OF THINGS
THAT LEAD TO RESILIENCE.
ALSO UNDERSTANDING THE CULTURAL
ASSETS AND WEALTH OF
MARGINALIZED COMMUNITIES SO THAT
WE'RE THINKING ABOUT PROTECTIVE
MECHANISMS IN PLACE LIKE GYASI'S
MOTHER HAD HIM READ ABOUT BEING
BLACK, WE KNOW THOSE PRACTICES
ARE PROTECTIVE MECHANISMS.
THERE ARE QUESTIONS WE SHOULD BE
ASKING TO REALLY ADVANCE
RESEARCH ON RACIAL AND ETHNIC
COMMUNITIES, SO IT'S NOT JUST
AMOUNT OF MONEY BUT THE
QUESTIONS THAT ARE BEING ASKED
AND WHO IS ASKING, TO CREATE
MORE DIVERSE IN ALL WAYS,
NEURODIVERSE, GENDER DIVERSE,
THAT WILL HELP LEAD TO THE
ASKING OF IMPORTANT QUESTIONS
BUT ALSO HELP US THINK ABOUT HOW
WE'RE ADDRESSING SOME OF THESE
MORE COMPLEX ISSUES AROUND
EQUITY AND STRUCTURAL RACISM.
>>I WANT TO ADDRESS THE FUNDING
PIECE.
ONE THING, THE FUNDING PIECE IS
ACTUALLY PART OF THE PROBLEM OF
RACISM.
ONE REASON THERE'S SO LITTLE
FUNDING IS BECAUSE FOR THE LAST
40 YEARS OR SO THERE'S BEEN A
DEINVESTMENT IN THE GOVERNMENT.
SO WE NEED TO FIGHT AGAINST THAT
TOO.
>>THANK YOU FOR WONDERFUL
COMMENTS AND ROBUST AND ENTIRE
ACTIVE -- INTERACTIVE
DISCUSSION.
WE APPRECIATE YOUR PRESENCE WITH
US AND APPRECIATE THIS LAST BIT
WHERE YOU ALSO SHARED SOME OF
YOUR TAKEHOME MESSAGES FOR
PEOPLE ON THE COMMITTEE.
THANK YOU SO MUCH.
SHELLI, I DON'T KNOW IF YOU
WOULD LIKE TO COMMENT AS WELL?
>>THANKS, SUSAN.
I WANT TO ONCE AGAIN THANK ALL
THE SPEAKERS, THE PANELISTS,
EVERYONE WHO HAD AN OPPORTUNITY
TO PRESENT TODAY.
WE APPRECIATE THAT.
I WANT TO THANK THE COMMITTEE
FOR ENGAGEMENT, GOOD QUESTIONS,
THOUGHTS, RECOMMENDATIONS
THROUGHOUT THE DAY TO MAKE THE
COMMITTEE MORE PRO-ACTIVE AND
IMPACTFUL IN THE BIGGER SENSE OF
THE WORD.
I I WANT TO THANK SUSAN AND HER
OFFICE FOR ORGANIZING THE
MEETING AND DOING SUCH A GREAT
JOB AT ORGANIZING AND
MODERATING.
AGAIN, THANK YOU.
IT'S BEEN MY PLEASURE TO BE PART
OF THIS TODAY.
>>THANK YOU.
>>THANKS TO EVERYONE WHO
PARTICIPATED IN THIS SESSION.
WE JUST HAVE A FEW MINUTES TO
WRAP UP THE MEETING.
WE'RE GOING TO GO TO A ROUND
ROBIN SESSION.
SO YOU'LL SEE IN YOUR PACKETS
YOU HAVE A ROUND ROBIN PACKET
WHERE MEMBERS OF THE COMMITTEE
SHARED UPDATES FROM AROUND THE
FEDERAL AGENCIES AND PRIVATE
ORGANIZATIONS AND IN VISUALS AS
WELL.
SO WE HAVE A FEW MINUTES IF
ANYONE WANTS TO SPEAK ABOUT
THEIR UPDATES OR EVEN IF YOU
DIDN'T CONTRIBUTE TO THE PACKET
AND YOU HAVE AN UPDATE WE CAN
HEAR YOUR UPDATES AT THIS TIME.
IS THERE ANYONE THAT WOULD LIKE
TO SHARE AN UPDATE VERBALLY OR
IN THE COMMENTS?
OH, I SEE THAT MARENEKA HAS ONE
BUT NEEDS A MOMENT.
>>TWO HANDS.
ALLISON AND SUSAN.
>>ALL RIGHT.
THANK YOU.
ALLISON?
>>YEAH, HI.
ALLISON FROM SOCIAL SECURE.
I JUST WANTED TO DRAW ATTENTION
TO GRANT ADMINISTRATIVE OPENING,
POSTING SOLICITATION FOR THE NEW
GRANTED ADMINISTRATOR FOR THE
SMALL GRANT PROGRAM.
IT'S DUE TO COME OUT THIS MONTH
OR MAY, SO PLEASE LOOK IN THE
PACKET AND IF YOU'RE AN
ORGANIZATION THAT DOES GRANT
ADMINISTRATION OR A UNIVERSITY,
PLEASE TAKE A LOOK AND APPLY.
THANK YOU.
>>THANK YOU, ALLISON.
>>GOOD AFTERNOON.
I REPRESENT NIDCD WITH DR.
TUCCI.
I DID WANT TO MENTION IN JANUARY
WE HAD AN NIDCD-SPONSORED
WEBINAR, MINIMALLY SPEAKING
INDIVIDUALS, TO PROMOTE LANGUAGE
AND COMMUNICATION.
ONE OF OUR MEMBERS WAS A
CO-CHAIR.
WE NOW HAVE ON OUR NIDCD WEBSITE
A SUMMARY OF THE MEETING,
AGENDA, LIST OF THE
PARTICIPANTS, AND SOME OF THE
PARTICIPANT-SUBJECTED
PUBLICATIONS, ON THE NIDCD
WEBSITE.
WE'RE CONTINUING TO ADDRESS
RESEARCH NEEDS OF MINIMALLY
VERBAL NON-SPEAKING INDIVIDUALS,
AND IN FACT YESTERDAY IN RECORD
SPEED NIDCD NOTICE OF
SIGNIFICANT INTEREST, NOSI, WAS
PUBLISHED IN THE NIH GUIDE,
FOCUSING ON MANY OF THE AREAS
THAT WERE HIGHLIGHTED.
SINCE THE WEBINAR NIDCD HAS MET
WITH MINIMALLY VERBAL
NON-SPEAKING INDIVIDUALS AS WELL
AS AGENCIES THAT SERVE THEM AND
WE'RE GOING TO CONTINUE TO DO
SO.
FINALLY WE WILL KEEP EVERYBODY
INFORMED ABOUT ANY FUTURE
FUNDING OPPORTUNITIES THAT ARE
FOCUSED ON THIS POPULATION.
THANK YOU, SUSAN.
>>THANK YOU, JUDITH.
VIDEO IS AVAILABLE FOR PEOPLE TO
WATCH THE MEETING AS WELL,
RIGHT?
>>ABSOLUTELY.
BOTH DAYS.
>>WONDERFUL.
IT'S IN THE ROUND ROBIN PACKET
AND EVENTS SECTION OF OUR
WEBSITE IF YOU'RE LOOKING FOR
IT.
SO THANK YOU.
AMANDA RYKERT?
>>I WANT TO POINT OUT, YOU MAY
HAVE GOTTEN IT IN E-MAIL TODAY,
MAYBE NOT, NIDILRR IS MANDATED
BY CONGRESS TO COME UP WITH A
LONG RANGE PLAN AND LONG RANGE
PLAN SPANS FIVE YEARS.
AND SO FOR THE PAST YEAR,
NIDILRR INITIATED THE NEW
DEVELOPMENT OF THE NEW LONG
RANGE PLAN FOR 2024 TO 2028, AND
OUR DIRECTOR WAS GREAT ABOUT
GOING OUT AND GETTING INPUT FROM
THE FIELD AND FROM ALL SORTS OF
STAKEHOLDERS, AND SO NOW BASED
ON THAT FEEDBACK NIDILRR HAS
FINALIZE DIRECTION FOR NEW LONG
RANGE PLAN, HOLDING A WEBINAR
ON -- LET ME GET THE DATE RIGHT.
NOT SEEING THE DATE RIGHT NOW.
THAT'S SILLY.
I BELIEVE APRIL 16.
I CAN SEND THE INFORMATION.
YOU DO NEED TO REGISTER FOR THE
WEBINAR IF YOU WANT TO ATTEND,
KEY THEMES FOR LONG RANGE
PLANNED THAT IMPACT AND STEER
WHERE THE MONEY IS OFFERED FOR
DISABILITY-RELATED RESEARCH.
THANK YOU.
>>IF YOU HAVE AN UPDATED LINK
YOU CAN ADDED IN THE ROUND ROBIN
PACKET, EVENTS PAGE.
>>THANK YOU.
>>NEXT SCOTT ROBERTSON.
>>THANKS, SUSAN.
I KNOW WE HAVE A FEW UPDATES FOR
OFFICE OF DISABILITY EMPLOYMENT
POLICY AT DOL IN THE UPDATES.
I WANT TO SPOTLIGHT A COUPLE.
ONE IS JOB ACCOMMODATION
NETWORK.
MANY ARE FAMILIAR WITH IT, A
WEBINAR TRAINING SESSION ON ABLE
13 SO THAT'S A WEEK FROM THIS
COMING THURSDAY.
2:00.
REGISTRATION LINK ON THE UPDATES
LISTING IN TERMS OF THE BULLET
POINTS IN THERE IN TERMS OF
UPDATES, FREE, 2:00 ON APRIL 13.
AND THEN ON THE NEURODIVERSITY
END APPRENTICESHIP BY
HAPPENSTANCE A NUMBER OF TIMES,
SO I THINK SOME FOLKS KNOW WE
HAVE A PROJECT CALLED DEPARTMENT
OF INCLUSIVE APPRENTICESHIP, AND
SHAMELESS SELF-PLUG, THE LATEST
PODCAST EPISODE FEATURES MYSELF
DISCUSSING INTERSECTION ON
NEURODIVERSITY INCLUDING AUTISM
AND ACCESS TO APPRENTICESHIPS
WITH SUPPORT SYSTEMS AND
SERVICES FOR SUCCESS TO SUPPORT
CAREER PATHWAYS FOR FOLKS,
FIELDS, JOB AREAS THAT FIT
SKILLS, TALENTS, STRENGTH AREAS,
SO YOU CAN FIND THE LINK THERE
IN THE PACKET BUT IT'S
INCLUSIVEAPPRENTICESHIP .ORG.
HAPPY NATIONAL AUTISM MONTH,
EXCITING TODAY IN TERMS OF
DISCUSSIONS.
THANK YOU, SUSAN AND EVERYBODY,
WHO ORCHESTRATES THESE SESSIONS
AND KEEPS THE ORDER AND THE
STATEMENT IN TERMS OF THE
DRAFTING FOR THAT.
THAT WAS ESPECIALLY GREAT.
AND I APPRECIATE THAT.
SO THIS IS A VERY ABLE
DISCUSSION TODAY.
>>THANK YOU SO MUCH.
AND I'M GOING TO READ A COMMENT
FROM MORENIKE.
AND SO THIS IS AN ANNOUNCEMENT
ABOUT PARTNERSHIP BETWEEN
UNIVERSITY OF PITTSBURGH, HOWARD
UNIVERSITY, FOUNDATIONS FOR
DIVERGENT MINDS, COLOR OF
AUTISM, AUTISTIC WOMEN NETWORK
HOSTING A FREE ONLINE EVENT,
SUFFERING IN SILENCE,
SUICIDALITY, APRIL 28th, A
WEBINAR.
WE WILL -- WE CAN ADD THIS EVENT
INTO THE ROUND ROBIN DOCUMENT
AND PUT IT ON THE WEBSITE SO
PEOPLE CAN ACCESS IT.
THANK YOU, MORENIKE.
NEXT, JALYNN.
>>THANK YOU.
THIS HAS BEEN AN EXCELLENT
MEETING TODAY, EXTREMELY
INFORMATIVE.
AND KUDOS TO ALL OF YOU FOR
PUTTING THIS TOGETHER, FOR THE
EXCELLENT PRESENTATIONS.
I WANTED TO MENTION APRIL 21 HAS
BEEN DECLARED IN CONGRESS AS
AUTISM AFTER 21 DAY.
AND MADISON HOUSE AUTISM
FOUNDATION HAS BEEN INSTRUMENTAL
IN WORKING ON THAT FOR THE LAST
20 YEARS, TRYING TO PROMOTE
INFORMATION WITHIN COMMUNITIES
ABOUT ADULT AUTISM.
AND WE WILL BE HAVING OUR ANNUAL
BREAKFAST, AND WE ARE FORTUNATE
TO HAVE DR. DANIELS WHO WILL BE
WITH US, AND WILL BE SHARING HER
INTERVIEWS WITH SOME OF THE
ARTISTS SHE HAS BEEN WORKING
WITH THIS MONTH.
BREAKFASTS ARE FOR THOUGHT
LEADERS BECAUSE WE HAVE FIGURED
THAT WE NEED TO EDUCATE
ESPECIALLY OUR NEWEST -- NEWLY
ELECTED OFFICIALS SO THEY
UNDERSTAND THEY HAVE
CONSTITUENCIES IN NEED OF THEIR
UNDERSTANDING AND THEIR EFFORTS
IN PUTTING PEOPLE INTO POLICY
AND INTO ALL OF THE THINKING
THEY MAKE IN THE COMMUNITY.
WE'VE SEEN MOVEMENT FORWARD.
WE'RE COMMUNITY BASED TRYING TO
SEE WHAT WE CAN DO, IN
COMMUNITIES, AND WE'RE WORKING
ON A PILOT PROGRAM ACROSS THE
COUNTRY ON THE OTHER SIDE OF THE
COUNTRY WITH THE NUMEROUS
COMMUNITIES AND ORGANIZATIONS IN
DOING SUCH.
WE WILL HAVE A NEW DOCUMENTARY,
WE DO MANY DOCUMENTARIES, SO
PEOPLE WHO MAY NOT FEEL
COMFORTABLE IN BEING IN CROWDS
CAN ALSO HAVE THEIR VOICE HEARD
AND PEOPLE CAN SEE WHO THEY ARE
AND UNDERSTAND THEIR STORIES.
AND WE ALSO CONTINUE TO WORK IN
THE NATIONAL PROGRAM ON MENTAL
HEALTH.
BUT REMEMBER AUTISM AFTER 21 DAY
ON FRIDAY, THIS YEAR, AND THINK
ABOUT THE ADULTS IN YOUR LIFE ON
THE SPECTRUM.
>>THANK YOU.
YOUR EVENT IS ALSO IN OUR ROUND
ROBIN PACKET.
AND I WILL ALSO JUST THROW IN A
PLUG AGAIN FOR OUR EVENT ON
APRIL 14, EVERYONE IS WELCOME.
I DON'T THINK I PUT IN A SLIDE
AT THE END FOR THAT, BUT CHECK
IT OUT ON OUR WEBSITE, ON THE
CAROUSEL THAT ROTATES ON THE
REMEMBER SITE IF YOU GO THERE.
IT'S SURE TO BE A REALLY
EXCITING EVENT.
SO IN TERMS OF OUR ACTION ITEMS,
I DON'T -- OH, MY SLIDES ARE
HERE.
I JUST NEED THE CONTROL.
THERE WE GO.
SO, NEXT FULL COMMITTEE MEETING
OF THE IACC IS OCTOBER 2023,
WE'RE HOPING WE WILL BE HYBRID
BUT WE ALSO HAVE A POSSIBILITY
OF BEING VIRTUAL IF WE DON'T
HAVE THE ROOM AVAILABLE.
WE'LL KEEP YOU POSTED ON THAT.
AND CHECK THE IACC WEBSITE FOR
MEETING INFORMATION AND UPDATE
IT'S.
-- UPDATES.
I'LL BE E-MAILING AS WELL.
I GUESS THE OTHER PIECE IN TERMS
OF ACTION ITEMS GOING OUT WILL
BE COMMUNICATING ABOUT THE
SUMMARY OF ADVANCES AND
CO-OCCURRING CONDITIONS IN THE
DOCUMENT BETWEEN NOW AND THE
NEXT MEETING BUT WE DON'T HAVE A
LOT OF ITEMS SINCE YOU FINISHED
THE STRATEGIC PLAN SUCCESSFULLY.
AND WE'LL SHARE WITH YOU ANY
UPDATES ON PUBLISHED MATERIALS.
AND SHELLI, DO YOU HAVE ANY
FINAL WORDS FOR THE GROUP TODAY?
>>THANKS, SUSAN.
I'LL JUST SAY AGAIN ECHOING
EARLIER COMMENTS, THANK YOU ALL
SO MUCH FOR YOUR PARTICIPATION.
IT WAS A VERY INFORMATIVE SET OF
DISCUSSIONS TODAY.
WE ALL BENEFIT FROM HEARING THE
PERSPECTIVES AND TRYING TO THINK
FORWARD ABOUT HOW WE CAN MAKE
CHANGE.
SO THANK YOU AGAIN FOR YOUR
PARTICIPATION.
THANKS AGAIN TO SUSAN AND HER
OFFICE AS SHE IS SHOWING ON THE
LAST SLIDE, IT'S QUITE A FEAT TO
PULL THESE MEETINGS OFF,
PARTICULARLY ONLINE.
I THINK THEY ALWAYS DO A
FANTASTIC JOB.
>>THANK YOU.
YES, THANK YOU TO THE TEAM THAT
SUPPORTED US TODAY, THE OFFICE
OF AUTISM RESEARCH COORDINATION,
AS WELL AS ROSE LI AND
ASSOCIATES, AND CENTER FOR
INFORMATION TECHNOLOGY AT NIH
THAT SUPPORTS NIH VIDEOCAST.
WE APPRECIATE YOUR SUPPORT AND A
WONDERFUL WAY TO RECOGNIZE THIS
SPECIAL MONTH.
SO WE HOPE YOU ALL HAVE A
WONDERFUL REST OF YOUR DAY.
WE LOOK FORWARD TO BEING IN
TOUCH.
TAKE CARE.
THANK YOU.
BYE-BYE.
>>THANKS, EVERYONE.