WELCOME AND I'M JOSHUA GORDON
FROM THE INTERAGENCY
COORDINATING COMMITTEE.
IT'S MY PLEASURE ON BEHALF OF MY
MEMBERS AND SUSAN DANIELS THE
DIRECTOR OF THE OFFICE OF AUTISM
RESEARCH COORDINATION AND
EXECUTIVE SECRETARY OF THE IACC,
IT'S MY PLEASURE TO WELCOME YOU
TO THIS MEETING OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE.
WE WILL PROCEED IN A FEW MOMENTS
WITH THE ROLL CALL AND APPROVAL
OF MINUTES.
BUT I JUST HAVE A FEW
ANNOUNCEMENTS BEFORE HAND.
AND BEFORE I GET THERE, LET ME
REMIND ALL THE MEMBERS OF THE
IACC, THAT WHEN YOU'RE SPEAKING,
PLEASE ACTIVATE YOUR VIDEOS AND
UNMUTE YOURSELVES AND WHEN
YOU'RE NOT SPEAKING, PLEASE
UNMUTE YOURSELF BUT LEAVE VIDEOS
ON WHEN THERE'S NOT AN ACTIVE
PRESENTATION.
SOME BRIEF ANNOUNCEMENTS.
WE'VE HAD SOME CHANGES IN
MEMBERSHIP SINCE THE LAST
MEETING THOUGH THIS IS A NASCENT
COMMITTEE.
WE'VE HAD CHANGES ALREADY.
AS MANY MAY HAVE HEARD, MY BOSS
AND FRIEND, DR. FRANCIS COLLINS
HAS STEPPED DOWN FROM THIS
LEADERSHIP ROLE OF NIH DIRECTOR
AS OF LAST MONTH AND HE'S ALWAYS
BEEN VERY SUPPORTIVE OF OUR
AUTISM EFFORTS AND WE'LL MISS
HIS LEADERSHIP.
DR. LARRY TABAK SERVING AS THE
ACTING DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH IS
OFFICIALLY A MEMBER OF THIS
COMMITTEE ACTING IN THAT STEAD.
AND WILL BE UNTIL A NEW DIRECTOR
IS APPOINTED BY THE PRESIDENT.
DR. TABAK UNFORTUNATELY WAS NOT
ABLE TO JOIN US TODAY BUT WILL
PLAN TO JOIN US IN THE NEXT
MEETING, APRIL, TO INTRODUCE
HIMSELF.
IN THE NEXT TIME DR. ACLIN WILL
CONTINUE TO ATTEND ON BEHALF OF
THE OFFICE OF THE DIRECTOR.
ALSO, WE HAVE A NEW MEMBER FROM
TE IT U.S. DEPARTMENT OF LABOR,
TARYN WILLIAMS IS JOIN US AS A
MEMBER.
WE APPRECIATED DR. JENNIFER
SHEHEH'S PRESENTATION AND WE
CONTINUE COLLABORATING WITH HER
AND ASSISTANT SECRETARY
WILLIAMS.
SHE SHARED UPDATES BUT IF YOU'D
LIKE TO TAKE A FEW MOMENT TO
INTRODUCE YOURSELF AGAIN, TARYN,
THAT'D BE GREAT.
HI.
>> HI, GOOD MORNING, EVERYONE.
I'M GLAD TO BE WITH YOU AGAIN
THIS MORNING AS YOU HEARD.
I'M THE ASSISTANT SECRETARY OF
THE OFFICE OF DISABILITY
EMPLOYMENT POLICY AND I AM
LOOKING FORWARDS TO OUR
CONTINUED PARTICIPATION ON THE
IACC AND JOIN BY SENIOR POLICY
ADVISER FROM OUR OFFICE,
DR. SCOTT ROBINSON WHO HAS BEEN
ACTIVELY INVOLVED FOR MANY
YEARS.
>> WE KNOW SCOTT WELL AND THANK
YOU BOTH FOR JOINING US.
LASTLY WE HAVE A DEPARTURE.
DR. PARADIZ WITH AUTISM SPEAKS
AND A PUBLIC MEMBER AND RETIRED
AND STEP DOWN AS PART OF THAT
RETIREMENT.
WE EXPECT THAT THE SECRETARY OF
HHS SECRETARY BECERRA WILL
NOMINA
NOMINATE SOMEONE RELATIVE SOON
AND HOPE BY THE NEXT MEETING
WE'LL HAVE AN ADDITIONAL MEMBER
TO REPLACE DR. PARADIZ.
STAY TUNED FOR UPDATES IN THE
FUTURE.
TODAY'S PROGRAM IS EXCITING.
I'M PLEASED WE'LL HAVE
PRESENTATIONS FROM THE SOCIAL
SECURITY ADMINISTRATION ABOUT
THE PROGRAMS AND THAT'S
INTERESTING TO HEAR AND FROM THE
CDC ABOUT THE AUTISM PREVALENCE
DATA RELEASES WHICH I KNOW IS OF
INTEREST TO MANY ON THE
COMMITTEE AND TO MANY OF THE
PUBLIC TUNING IN TODAY.
AND FROM DR. CATHY LORD, ONE OF
OUR ESTEEMED AUTISM RESEARCHERS
AT NIMH AND FUNDED BY NIMH AND
OTHER INSTITUTES ACROSS NIH.
SHE'LL BE REPRESENTING THE
LANCET COMMISSION ON THE FUTURE
OF CARE AND PEOPLE ON THE AUTISM
SPECTRUM.
AS MANY KNOW THE LANCET
COMMISSION RECENTLY PUBLISHED
ITS REPORT PULL OF
RECOMMENDATIONS AND -- FULL OF
RECOMMENDATIONS.
WE'LL GLAD TO BE HEARING FROM
DR. LORD AND DISCUSS THE
RECOMMENDATIONS AFTER THE
PRESENTATION.
WE HAVE A LOT OF WORK TO DO AS A
COMMITTEE ON TWO OF OUR KEY
ASSIGNMENTS, REFINING AND
REVIVING THE IACC EVACUATE PLAN
AND THE SUMMARY OF ADVANCES AND
DR. DANIELS WILL LEAD US THROUGH
THOSE WORK ITEMS AT DIFFERENT
POINTS AND AS USUAL WE'LL HAVE
THE OPPORTUNITY FOR PUBLIC
COMMENTS AND THE OPPORTUNITY TO
DISCUSS THOSE COMMENTS AS A
COMBROUP.
>> THOSE IN ZOOM CAN SEE THE
ATTENDANTS AND WHEN WE'RE HAVING
DISCUSSION PERIODS PEOPLE CAN
FEEL FREE TO TURN ON CAMERAS.
FOR SOME PEOPLE ZOOM IS
STRESSFUL AND IF THAT'S THE CASE
YOU CAN LEAVE IT OFF BUT WE
STILL WELCOME YOUR COMMENTS AND
YOU CAN PRODE THOSE COMMENTS
VERBALLY OR IF YOU NEED TO DO SO
IN WRITING USE THE CHAT TO
CONTACT THE CONTRACTOR STAFF WE
HAVE TO HELP WITH WRITTEN
COMMENTS THAT MAYBE NEEDED AS A
DISABILITY ACCOMMODATION.
I'M ALSO GOING TO LET YOU KNOW
TODAY WE'RE GOING TO TRY FOR THE
FIRST TIME USING ZOOM POLLING TO
GET OPINIONS FROM THE COMMITTEE
BECAUSE IT'S SUCH A LARGE
COMMITTEE SOMETIMES IT'S
DIFFICULT TO GAUGE PEOPLE'S
OPINIONS JUST BY RAISING HANDS
BECAUSE WE'RE A BIG GROUP.
WE'LL TRY THE ZOOM POLLING AND
FOR THOSE IN THE AUDIENCE, YOU
WON'T BE ABLE TO SEE THE ZOOM
POLLS PEOPLE IN THE ACTUAL ZOOM
ROOM WILL BE ABLE TO SEE THEM
BUT WE'LL DESCRIBE THEM FOR YOU
AND AFTER THE FACT WE'LL ADD
THEM SO PEOPLE CAN SEE WHAT THE
ZOOM POLLS LOOKED LIKE SO
MEMBERS OF THE OR ALTERNATES
REPRESENTING SOMEONE NOT HERE,
YOU'RE WELCOME TO PARTICIPATE IN
POLLS.
WITH THAT, LET'S MOVE ON TO THE
APPROVAL OF THE MINUTES
EVERYBODY HAS ACCESS TO THE
OCTOBER DRAFT MINUTES ONLINE AND
THE INSTRUCTIONS WERE SENT TO
THE CHAIR IN TERMS OF HOW TO
ACCESS OUR MATERIALS WE HAVE
RECEIVED A COUPLE CORRECTIONS
FROM JALEN PRINCE.
I DON'T KNOW IF THERE'S OTHER
CORRECTIONS BUT CAN WE HAVE A
MEGS TO ACCEPT THE MINUTES?
-- A MOTION TO ACCEPT THE
MINUTES WITH THE CORRECTIONS
RECEIVED SO FAR?
>> I MOVE TO ACCEPT THE MINUTES.
THIS IS SUSAN RIVERA.
>> THANK YOU.
CAN WE IS A SECOND?
>> I SECOND.
>> GREAT.
ANY DISCUSSION TA WE NEED TO
HAVE BEFORE WE WOULD BE ABLE TO
ACCESS TE MINUTES?
-- THE MINUTES.
I'M NOT SEEING A RAISED HAND.
ALL IN FAVOR CAN YOU HIT THE
RAISED HAND BUTTON?
>> SUSAN, WHERE'S THE RAISED
HAND BUTTON?
>> I SHOULD HAVE DONE THAT.
AND YOU HIT REACTIONS IN THE
BOTTOM.
>> THANK YOU, WE'LL DO IT AS A
ROLL CALL NEXT TIME.
THAT WILL PROBABLY MAKE IT
EASIER.
BUT IT LOOKS LIKE I HAVE A
MAJORITY OF THE COMMITTEE VOTING
TO ACCEPT THE MINUTES.
ALL RIGHT, YOU CAN PUT YOUR
HANDS DOWN.
IS THERE AN OPPOSED TO ACCEPTING
THE MINUTES AND IF SO RAISE YOUR
HAND ON ZOOM.
>> OKAY.
THAT'S GOOD.
CAN EVERYONE PUT YOUR HAND DOWN
IF YOU WERE IN FAVOR?
NOW WE'RE TAKING OPPOSED.
SO I SEE -- AND LARRY I'M
ASSUMING YOU'RE NOT OPPOSED BUT
PUTTING DOWN YOUR HAND.
WE DON'T HAVE ANYONE OPPOSED?
IS THERE ANYONE WHO WANTS TO
ABSTAIN?
I HAVE ONE OR TWO PEOPLE WHO
WANT TO ABSTAIN.
ALL RIGHT.
SO WITH THE MAJORITY THIS PASSES
SO WE'LL ACCEPT THE MINUTES WITH
THE COMMENTS THAT JALEN PRINCE
SENT IN AND IF ANYONE ELSE HAS
ANY LAST-MINUTE CORRECTIONS YOU
CAN FEEL FREE TO JUST E-MAIL US
THOSE CORRECTIONS AND WE'LL MAKE
SURE THEY GET IN AND WE'LL POST
THE MINUTES ON THE WEBSITE AFTER
THE MEETING.
THANK YOU VERY MUCH.
I'LL TURN IT BACK OVER TO JOSH.
>> THANKS, SUSAN FOR
PARTICIPATING IN THAT IMPORTANT
FORMALITY AND GET THE RECORD OF
PREVIOUS MEETINGS CORRECT AND
ALL THE MEETINGS ARE POFLT --
POSTED ON THE WEBSITE.
IT'S MY FAVOR TO GET TE
PROGRAMMATIC ASPECT OF THE
MEETING UNDERWAY AND IT'S MY
PLEASURE TO INTRODUCE
DR. JEFFERY HEMMETER THE ACTING
DEPUTY ASSOCIATE DIRECTOR IN THE
OFFICE OF RETIREMENT AND
DISABILITY POLICY AT THE SOCIAL
SECURITY ADMINISTRATION.
DR. HEMMETER IS AN ECONOMIST AND
HELPS OVERSEE RESEARCH AND
EVALUATION AND OTHER POLICIES
RELATED TO DISABILITY AND RETURN
TO WORK.
WE'RE REALLY EXCITED TO HEAR HIS
PRESENTATION ON THE SOCIAL
ADMINISTRATION AND THE AUTISM
SPECTRUM DISABILITY INSURANCE
SUPPLEMENTAL SECURITY INCOME AND
WORK.
THANK YOU FOR JOINING US TODAY.
REALLY APPRECIATE IT.
>> THANK YOU AND THANKS TO
DR. DANIELS ALSO FOR INVITING ME
TO SPEAK WITH YOU ALL TODAY ON
THE PROGRAM AND POLICY.
TE GOAL IF THE TIME I HAVE IS TO
SHARE WHAT SSA IS AND DOES AND
DISCUSS HOW THE POLICIES ARE
RELATED TO AUTISM.
THE PROGRAMS ARE VAST AND
COMPLEX AND CAN'T COVER THE
NOOKS AND CRANNIES OF THE
PROGRAM.
IF I USE IMPROPER TERMINOLOGY I
APOLOGIZE UP FRONT AND WILL
TOUCH UPON THE CURRENT
DEVELOPMENTS WITH THE SOCIAL
SECURITY'S CURRENT POSTURE
TOWARDS THE PUBLIC AND COVID BUT
I WILL NOT BE SAYING ANYTHING
NOT ALREADY PUBLIC JUST BECAUSE
THERE ARE ONGOING NEGOTIATIONS
AND THING GOING ON OF THAT
NATURE.
AND ANYTHING I SAY IS NOT
NECESSARILY THE OPINION OF THE
SOCIAL SECURITY ADMINISTRATION
OR THE FEDERAL GOVERNMENT.
I WANT TO START BY HIGHLIGHTING
IT'S AN INDEPENDENT FEDERAL
AGENCY.
IT'S NOT PART OF HHS, LABOR OR
ANOTHER DEPARTMENT.
WE HAVE ABOUT 60,000 EMPLOYEES
AND MOST PROVIDE DIRECT SERVICE
TO CLAIMANTS AND BENEFICIARIES
THROUGH IT 1500 FIELD OFFICES
AND PAYMENT CENTERS AND
TELESERVICE CENTERS.
IN ADDITION, SSA CONTRACTS WITH
EVERY STATE'S SERVICE AND
RESPONSIBLE FOR MAKING THE FIRST
DISABILITY DETERMINATION FOR ANY
CLAIMS WE RECEIVE.
THERE'S TWO PRIMARY PROGRAMS.
THE OLD AGE SURVIVORS AND
DISABILITY INSURANCE PROGRAM
REFERRED TO AS SOCIAL SECURITY
AND THE SUPPLEMENTAL SOCIAL
SECURITY PROGRAM OR SSI AND IT'S
SPLIT FOR ACCOUNTING PURPOSES.
I'LL PROBABLY REFER TO DI AND
SSI AND DI PAYS OUT 14 -- 1 DID
1 44 BILLION AND IT'S BASED ON
EARNINGS HISTORY AND AUXILIARIES
AND DEPENDENTS AS DISABLED ADULT
CHILDREN OR WIDOWERS DEPENDING
ON WHAT THE PARTICULAR ROLES
ARE.
I'M NOT GOING TO GET INTO ALL
THAT BUT THE THREE MAIN
DISABILITY CATEGORIES IN THE
PROGRAM.
THE SSI PROGRAM PAYS OUT $60
BILLION AND CHILDREN AND ADULTS
ARE REQUIRED TO HAVE A
DISABILITY AND ELDERLY ARE NOT
BUT THERE ARE SIGNIFICANT
DIFFERENCES BETWEEN THE PROGRAMS
AND I WILL GO INTO THAT LATER.
I WANTED TO GIVE YOU BACKGROUND
ABOUT THE WORK LOADS WITH THE
60,000 PEOPLE DO.
SO SSA FIELDED 2.5 MILLION
CLAIMS AND IT TAKES ABOUT 171
DAYS TO ADJUDICATE.
IF AN INDIVIDUAL DOES NOT AGREE
WITH AN INITIAL DENIAL CAN
APPEAL THAT AND USUALLY THE
HEARINGS TAKE 310 DAYS ON
AVERAGE.
IF A CLAIM STILL DOESN'T AGREE
THE CASE CAN BE APPEALED TO THE
APPEALS COUNCIL AND FEDERAL
COURT AND SUPREME COURT.
IN ADDITION TO THAT WORK,
THERE'S ABOUT 2.36 MILLION CALLS
AND REVIEWS AND INCLUDING ABOUT
500,000 FULL MEDICAL REVIEWS AND
OVER 2 MILLION NON-MEDICAL
REVIEWS TO ENSURE PEOPLE ARE
STILL ELIGIBLE FOR THE PROGRAM
AFTER THE INITIAL DECISION BUT
THERE'S MORE.
THERE'S OASI CLAIMS AND
ASSIGNING OF SOCIAL SECURITY
NUMBERS AN MEDICAID AND SNAP
APPLICATIONS AND TAKING IN DEATH
REPORTS AND OTHER WORK LOADS.
ALL THAT TO SAY SSA HAS A
SIGNIFICANT WORK LOAD FROM BIRTH
TO DEATH.
WHEN YOU FILE AN APPLICATION FOR
DISABILITY BENEFITS WE ALWAYS
CHECK ELIGIBILITY WITH DI AND
SSI AND SAME REQUIREMENTS BUT
THE NON-MEDICAL REQUIREMENTS
DIFFER.
THIS IS THE MAIN DIFFERENCES
BETWEEN TE PROGRAMS.
THE DI PAYMENTS COME FROM THE
DISABILITY INSURANCE TRUST FUND
AND ARE ARE BASED ON PAST
EARNINGS OF THE INDIVIDUAL OR
THE PERSON THEY WERE DEPENDENT
ON AND FUNDED THROUGH FICA
CONTRIBUTIONS.
IT'S A SOCIAL INSURANCE PROGRAM.
SSI COME FROM THE GENERAL
TREASURE AND A NEEDS-BASED
PUBLIC ASSISTANCE PROGRAM.
THEY PAY PEOPLE WHO CANNOT WORK
REGARDLESS OF RESOURCES AND
OTHER INCOME AND SSI HAS
SIGNIFICANT LIMIT ON RESOURCES
AND INCOME I'LL TALK ABOUT.
THIS SLIDE SHOWS THE DIFFERENT
STEPS IN THE DISABILITY
DETERMINATION PROCESS.
I WANT TO NOTE THAT FINANCIAL
ELIGIBILITY SUCH AS ASSET LEVEL
FOR SSI OR STATUS LEVEL ARE KUN
BY A FIELD OFFICE AND THERE'S A
THREE STEP PROPOSE FOR
QUALIFYING AND FOR ADULTS FIVE
STEP PROCESSES.
POR BOTH CHILDREN AND ADULT THE
FIRST STEP IS JUST CHECK TO SEE
IF THEY HAVE EARNINGS ABOVE
WHAT'S CALLED THE SUBSTANTIAL
GAINS ACTIVITY LEVEL AND THE
SECOND STEP IS SEVERE
IMPAIRMENT.
FOR CONCERN THE THIRD STEP IS TO
DETERMINE IF IT MEETS THE
MEDICAL LISTINGS.
THERE'S A LISTING OF MEDICAL
CONDITIONS SSA CONSIDERS SEVERE
ENOUGH TO CAUSE FUNCTIONAL
LIMITATIONS.
FOR ADULTS, THE THIRD STEP IS
SIMILAR BUT DOESN'T INCLUDE THE
FUNCTIONAL AND EQUAL CHECK.
IN SAID IF THE INDIVIDUAL CAN
PERFORM PAST RELEVANT WORK AND
THE FIFTH STEP DETERMINES IF AN
INDIVIDUAL CAN PERFORM ANY WORK
IN THE NATIONAL ECONOMY.
I WANT TO RETURN TO THE
DEFINITION OF DISABILITY AND
THEY'RE STATUTORILY AND THEY'RE
MORE RESTRICTIVE PERFECT OTHER
PROGRAMS AND THERE'S
DIFFERENCES.
FOR ADULTS THE ONE ON TOP, IT IS
AGAIN THE INABILITY TO DO ANY
SUBSTANTIALLY GAINFUL ACTIVITY
FOR IMPAIRMENT EXPECTED TO
RESULT IN DEATH AND INTENDED TO
BE MEDICALLY DETERMINABLE, LONG
LASTING AND ENDING IN DEATH AND
FOR CHILDREN INSTEAD OF
SUBSTANTIAL COMBAN
GAINFUL ACTIVITY MARKED BY
LIMITATION.
IT'S HE FUNCTIONING WE WOULD
EXPECT WE EXPECT TO FIND ON
STANDARDIZED TESTING SCORES LESS
THAN THREE STANDARD DEVIATIONS
BELOW THE MEAN AND SCORES THREE
STANDARD DEVIATIONS BELOW THE
MEAN.
THE BLUE BOOK DESCRIBES TE
PROCESS FOR HEALTH
PROFESSIONALS.
FORMALLY CALLED THE DISABILITY
EVALUATION UNDER SOCIAL SECURITY
AND THERE'S A WEB PAGE LISTED AT
HE END OF THIS SLIDE.
SO IT LISTS SPECIFIC CRITERIA
UNDER WHICH CLAIMANTS CAN
QUALIFY FOR SPECIFIC CONDITIONS.
IT'S IMPORTANT TO NOTE THESE IT
LISTINGS ARE JUST SHORTCUTS TO
MAKING A DISABILITY
DETERMINATION.
THEY'RE NOT THE ONLY WAY QUALIFY
FOR BENEFITS.
THERE'S BEEN PRIOR IN MANY CASES
THAT LEVEL OF CRITERIA HAS BEEN
MET AND PEOPLE HAVE GENERALLY
BEEN FOUND TO BE ELIGIBLE FOR
BENEFITS AND CAUSES MARK AND
SEVERE PHYSICAL LIMITATIONS OR
REDUCTION IN SUBSTANTIAL GAIN
ACTIVITY.
IS THIS IS THE SUMMARY OF NON
VERBAL COMMUNICATION AND
SIGNIFICANTLY RESTRICTIVE
REPETITIVE PATTERNS OF BEHAVIOR,
INTEREST OR ACTIVITY AND IN
ADDITION REQUIRES AN EXTREME OR
MARK LIMITATION IN THE TWO OF
THE FOLLOWING AREAS WHICH ARE
UNDERSTAND, REMEMBER, INTERACT
WITH OTHERS, CONCENTRATE PERSIST
OR MAINTAIN PACE AND ADAPT OR
MANAGE.
I WANTED INCLUDE THIS BECAUSE
THIS OR THE EQUIVALENT IS WITH
AUTISM AND NO OTHER CONDITION
WILL NEED TO MEDICALLY SATISFY
TO QUALIFY FOR DI OR SSI AND
TARGETED FOR INDIVIDUALS FACING
THE MOST SEVERE BARRIERS.
SSI WILL LOOK DURING THE
DETERMINATION OR DDS WILL LOOK
AT THE ENTIRE MEDICAL HISTORY
AND SEEK OUT ADDITIONAL EVIDENCE
INCLUDING AS LONG AS SOMETHING
IS ALLEGED WE'LL TRY TO FIND
EVIDENCE FOR IT.
IF WE CAN'T FIND EVIDENCE IN
MEDICAL RECORDS THERE'S
CONSULTIVE EXAMINATIONS BECAUSE
IT HAS TO BE MEDICALLY
DETERMINABLE.
THE PROCESS TAKES A WHILE AND
WE'LL SEE WHAT HAPPENS WITH
CHILDREN ON THIS SLIDE.
AND I THINK FOR CHILDREN
APPLYING FOR SSI, THREE-QUARTERS
OF CLAIMS WITH AUTISM ARE
ALLOWED AND 25% APPEALED FOR
RECONSIDERATION ARE ALLOWED AND
THE NUMBERS DROP OFF AT EACH
LEVEL.
FOR ADULTS IT'S DIFFERENT AND
THEY'RE SUBJECT TO DATA ISSUES
IF SOMEONE CAN'T CLAIM AUTISM AS
AN IMPAIRMENT BUT HAVE AND ON
THE SPECTRUM THEY WOULD NOT BE
ON THIS IT NUMBERS.
THE NEXT NUMBERS ARE ADULT
NUMBERS.
THE BIG POINT IS NUMBERS ARE
QUALITATIVELILY SIMILAR.
AND THEY'RE CAPPED AT A RATE
$841 FOR INDIVIDUALS AND $1,261
FOR A COUPLE AND REDUCED FOR A
DOLLAR OVER EVERY: --
EVERY DOLLAR AND THOSE
PARTICULAR LEVELS HAVE NOT
CHANGED SINCE 1989.
THAT IS A VERY LONG TIME AND
THEY'RE VERY LOW LEVELS.
BUT THAT IS TE LEGISLATION.
THERE'S LOTS OF EXCLUSIONS WE
DON'T COUNT A PERSON'S HOME OR
FIRST CAR OR PRIMARY RESIDENCE
BUT THERE'S RULES ABOUT
ACCOUNTING THE INCOME AVAILABLE
FROM OTHER PEOPLE.
SO A SPOUSE OR PARENT, FOR
EXAMPLE, WE WILL COUNT SOME
PORTION OF TIR INCOME AND
THERE'S INCOME AND SUPPORT OF
MAINTENANCE AND PEOPLE THEY LIVE
WITH AND THE LIKE.
AND BASICALLY EVERYTHING ON THE
SLIDE IS DETERMINED BY
LEGISLATION NOT BY SSA.
THERE'S REGULATIONS TO ADJUST
THE FEDERAL BENEFIT RATE.
OTHER THAN THAT EVERYTHING IS
SET BY LEGISLATION.
THE DI PROGRAM PAYS PEOPLE BASED
ON A PRIMARY INSURANCE AMOUNT
AND HAS PAST EARNING AND A
COMPLEX FORM I WON'T GO INTO
THAT MAKES IT MORE PROGRESSIVE
IN STRUCTURE.
THERE ARE THERE'S AUXILIARIES
BASED ON SEASON ELSE'S ACCOUNT.
IT'S A FAMILY BASED PAYMENT BUT
THERE'S A FAMILY MAXIMUM.
IN GENERAL A BENEFICIARY WILL
RECEIVE THEIR FULL BENEFIT NO
MATTER HOW HIGH THEIR EARNINGS
ARE DURING THE TRIAL WORK
PERIOD.
THE FIRST NINE MONTHS IN A
ROLLING 60-MONTH WINDOW WHERE
EARNINGS ARE GREATER THAN $970
THIS YEAR.
ONCE THE NINE MONTHS ARE USED
UP, THE BENEFITS ARE SUSPENDED
AND IT'S IF THE BENEFICIARY
PERFORMS SUBSTANTIAL GAINS
ACTIVITY AND SGA WHILE NOT A
DOLLAR VALUE TAKES THE
BENEFICIARIES INTO ACCOUNT AND
WHILE THERE'S A REGULATION THAT
CHANGE THE LEVEL PER LEGISLATION
THOSE ARE GENERALLY SET BY LAW.
IF AFTER 36 MONTHS IN THE
EXTENDED PERIOD OF ELIGIBILITY
THE BENEFICIARY IS WORKING ABOVE
SGA BENEFITS WILL BE TERMINATE.
THAT'S THE GIST OF THE PROGRAM.
THIS IT PROVIDES NUMBERS OF
DIAGNOSE OF AUTISM AN IT'S 20%
COMPARATIVELY 4% OF ADULTS
RECEIVING SSI HAVE A PRIMARY
DIAGNOSIS OF AUTISM AND IT
VARIES BY ENTITLEMENT CATEGORY
WITH OVER 6% OF WHAT'S TERMED
DISABLED ADULT CHILDREN
RECEIVING THE BENEFITS HAVING A
PRIMARY IMPAIRMENT OF AUTISM.
DISABLED ADULT CHILDREN ARE
ADULTS WHO FIRST HAD A DIAGNOSIS
BEFORE AGE 22 AND BASED ON A
PARENT A BENEFIT OF THEIR OWN.
IN GENERAL SSI PAYMENTS ARE
ABOVE THE AVERAGE AND DI
BENEFITS VARY BY CATEGORY.
THE COUNTS LIKELY UNDERESTIMATE
THE PEOPLE OF AUTISM IN EACH
PROGRAM BECAUSE OF THE WAY DATA
IS COLLECTED.
WHILE FULL MEDICAL HISTORY IS
CONSIDERED THE MAIN DATA SYSTEMS
JUST RECORD A PRIMARY AND
SECONDARY IMPAIRMENT AND
OFFICIAL STATISTICS GO BY THE
PRIMARY IMPAIRMENT LISTED.
BUT AUTISM COULD BE THE
SECONDARY IMPAIRMENT OR NOT
LISTED AT ALL IF THE THIRD OR
FOURTH I MPAIRMENIMPAIRMENT.
IT DEPENDS ON HOW IT'S RECORDED.
THE BULK OF THE IT PRESENTATION
IS ABOUT WORKING AND THE POINT I
WANT TO DRIVE HOME IS DI AND SSI
RECIPIENTS CAN WORK.
THERE'S LOTS RULES TO SUPPORT
WORK AND SUMMARIZED IN WHAT'S
CALLED THE RED BOOK AND IF YOU
CAN SEE IT'S LITERALLY A RED
BOOK AND CAN BE FOUND ONLINE AND
IN AKISS
>> ADDITION TO HARD COPY FORMAT
AND A LINK AT THE END OF THE
PRESENTATION.
SO I WANT TO COVER SOME OF THESE
WORK INCENTIVES.
THERE'S A LOT OF LISTED ON THE
SLIDES AND COVER A COUPLE AT A
HIGH LEVEL.
ON THIS SLIDE THIS TALKS ABOUT
THE CONTINUED PAYMENT UNDER VR
OR SIMILAR PROGRAM ALSO CALLED
SECTION 301.
IT IF YOU'RE RECEIVING THIS AND
HAVE A DETERMINATION AND LOSE
YOUR ELIGIBILITY AND YOU CAN
HAVE AN INDIVIDUALIZED EDUCATION
PLAN INCLUDED.
THIS REQUIRES A SPECIFIC
APPLICATION AND SUPERCEDED BY
OTHER PROGRAM POLICIES SUCH AS
STATUTORY BEN PIT -- BENEFIT
CONTINUATION AND IT'S WIDELY
AVAILABLE AND FOR SSI IF YOU'RE
UNDER AGE 22 MOST EARNINGS WILL
BE EXCLUDED UP TO $7400 PER
YEAR.
IT SHOULD BE USED MORE THAN IT
IS IT, I THINK.
THERE'S SERVICE ANIMALS AND
MEDICAL DEVICES AND OTHER THINGS
NEEDED FOR AN INDIVIDUAL TO WORK
ARE EXCLUDED FROM THE SSI
MONTHLY PAYMENT CALCULATION AND
THE AGS KERM NATION.
-- SGA DETERMINATION AND IF
THEY LEAVE BECAUSE THEY RETURNED
TO WORK THEY CAN RETURN THROUGH
AN EXPEDITED REINSTATEMENT
PROCESS IF THEY NEED TO COME
BACK TO THE PROGRAM WITHIN FIVE
YEARS.
THEY'LL GET IMMEDIATE PAYMENT
FOR A PERIOD OF TIME AND THERE
ARE SOME CONDITIONS.
THEY MUST HAVE THE SAME MEDICAL
CONDITION AND MEET OTHER
CONDITIONS.
ALL THESE WORK INCENTIVES ARE
DESIGNED TO MITIGATE SOME
CONCERNS ABOUT RETURNING TO WORK
THAT INDIVIDUALS MAY HAVE IF
THEY'RE RECEIVING BENEFITS AND
NOT ABLE TO CONTINUE TO RECEIVE
STAY OFF THE PROGRAM.
I WANT TO TALK ABOUT THE SECOND
BULLET.
TAT -- THAT ALLOWS AN
INDIVIDUAL TO CONTINUE EVEN IF
THEY ARE RETURN TO WORK BUT IT'S
UP TO $40,000 I BELIEVE AND SOME
OTHER IT VARIES A LOT.
PEOPLE WE HEAR PEOPLE ARE
INTERESTED IN SSI FROM THE
CONNECTION TO MEDICAID AND SO
THERE ARE WAYS TO CONTINUE
RECEIVE MEDICAID EVEN IF YOU ARE
WORKING.
THESE AREN'T SSA POLICIES BUT
SIMILAR TO 529 PROGRAMS FOR
CHECK AND AN INDIVIDUAL CAN HAVE
UP TO $100,000 IN THESE TAX
ACCOUNTS AND WON'T COUNT TOWARDS
SSI PURPOSES.
IT DOES HELP MITIGATE SOME OF
THE LIMITATIONS BY THE $200,000
LIMIT AN INDIVIDUAL HAS IN TERMS
OF ASSETS.
WE KNOW THE POLICY COMPLEX AND
EACH SSA FIELD OFFICE THERE'S A
WORK LIAISON WHO CAN PROVIDE
HELP AND THERE'S THOSE
RESPONSIBLE FOR WORK ISSUES OVER
A BROADER GEOGRAPHIC AREA AND
THESE ARE EMPLOYEES WHOSE JOB IT
IS TO PROVIDE SUPPORT AND NOT
SSA EMPLOYEE OR TECHNICIAN WILL
UNDERSTAND ALL THE DEPTHS OF
THESE RULES AND THEY HAVE HELP
INTERNALLY AND SSA FUNDS
EXTERNAL ORGANIZATIONS AND
PROVIDE BENEFIT OUTREACH TO BEN
BENEFICIARIES OR PEOPLE
INTERESTED IN WORK OR ARE
WORKING AND FUNDS AGENCIES UNDER
THE PROTECTION AND ADVOCACY FOR
BENEFICIARIES OF SOCIAL SECURITY
TO HELP PROTECT THE RIGHTS OF
PERSONS WITH DISABILITIES
RELATED TO WORK.
SSA HAS TWO INDEPENDENT RETURN
TO WORK PROGRAMS AND MANY ARE
ELIGIBLE FOR REHABILITATIONAL
SERVICE AND WILL BE REIMBURSED
FOR SUCCESSFUL OUTCOMES AND A
BENEFICIARY WHO DOESN'T WANT TO
WORK BECAUSE OF A WAIT LIST OR
ANOTHER REASON HAS THE CHOICE IF
THEY'RE OVER 18 TO WORK WITH
WHAT ARE CALLED EMPLOYMENT
NETWORKS IN OUR TICKET TO WORK
PROGRAM AND SSA WILL REIMBURSE
THE EMPLOYMENT NETWORKS FOR
SPECIFIC MILESTONES RELATED TO
WORK.
THEY'RE GENERALLY LEVELS OF
EMPLOYMENT OR MONTHS WITHOUT
RECEIVING BENEFITS BUT VRs HAVE
AN OPTION TO GET PAID UNDER THE
IT TRADITIONAL COST
REIMBURSEMENT PROGRAM AND SOME
ARE PRIVATE OR NONPROFIT AND
MULTIPLE OTHER STATE AGENCIES
CAN BE ENs AND SUPPORT THE
BUDGET BY HELPING SSA
BENEFICIARIES.
THE NEXT SHIED.
-- SLIDE.
THE NEXT SLIDES HIGHLIGHT THE
LIMITED RESEARCH AND AUTISM
THERE'S NOT RELATED TO THIS AND
I'M HOPING THE SLIDE DECK MAKES
IT UP TO EVERYBODY.
THERE'S LINK THERE FOR ALL OF
THESE AND A BRIEF SUMMARY OF
EACH ONE AND ONE MENTIONED THE
PROMISE PROJECT AND PROMOTING
READINESS IN MINORS WAS A JOINT
COLLABORATION WITH AGENCIES TO
OFFER SERVICES TO INDIVIDUALS
WHO ARE RECEIVING SSI AND THEIR
FAMILIES AND INDIVIDUALS HAVE TO
BE AGES 14 TO 16.
THERE'S 11 STATES INVOLVED AND
ONE OF THE REPORTS WE DID OR
CAME OUT WAS JUST ON HOW THE
SERVICES THAT WERE PROVIDED
AFFECT EED WHAT THE IMPACT WAS ON
INDIVIDUALS WITH THE DIAGNOSIS
OF AUTISM.
SO THERE'S SOME INTERESTING
RESEARCH OUT THERE BUT I'M NOT
GOING TO GO THROUGH EACH OF
THESE.
IN THE INTEREST OF TIME CAN WE
GO TO SLIDE 26 HOW TO APPLY.
I WANTED TO HIGHLIGHT HOW TO
APPLY TO SSI AND DI.
RIGHT NOW FILED OFFICES ARE
CLOSED.
YOU PROBABLY KNOW AS MUCH AS I
DO.
THE ONLY WAY TO APPLY IS BY
GOING ONLINE OR BY PHONE AND
UNFORTUNATELY FOR CHILDREN WHICH
ARE THOSE UNDER 18, YOU CANNOT
APPLY FOR SSI ONLINE YOU NEED A
A -- APPLY.
AND SSA BECAUSE OF THE PANDEMIC
AND KNOWING FIELD OFFICES ARE
CLOSED STEPPED UP THE
INFORMATION AND OUTREACH
EFFORTS.
THERE'S A WEBSITE DEDICATED TO
INFORMATION FOR HELPING PEOPLE
HELPING OTHERS.
AND THIS INCLUDES ADDITIONAL
INFORMATION HOW TO APPLY AND
OTHER RESOURCES AND HOW TO HELP
SOMEBODY APPLY.
WHAT YOU NEED TO DO AND WHAT
YOU'RE NOT ALLOWED TO DO AND
WHAT YOU CAN HELP THEM DO BUT
IT'S A GOOD RESOURCE FOR PEOPLE
TO BE AWARE OF.
THERE'S TWO OTHER THINGS NOT ON
THE SLIDES I WANT TO HIGHLIGHT
AND A COUPLE OTHER THINGS AS
WELL.
I WANT TO PHOT -- NOTE WE HAVE
THE INTERVENTIONAL COOPERATIVE
PROGRAM A WAY TO TEST A NEW
POLICY OR PROGRAM AND FORECAST
FUNDING OPPORTUNITIES ON
GRANTS.gov IF YOU CAN SPREAD THE
WORD THAT'S GREAT.
IT'S WHERE WE CAN CHANGE SSI
PROGRAM RULES AND TEST NEW
SERVICES AND PARTNER PEOPLE WHO
ARE HELPING PROVIDE BENEFITS
COUNSELLING OR ASSISTANCE
APPLYING ALL NEW WAYS OF TRYING
TO TEST NEW POLICIES AND
EVALUATE THEM AND MUCH IS BASED
ON LEGISLATION.
THERE'S PROPOSALS AS PART OF THE
BUDGET IF YOU NEVER READ OUR
BUDGET IT'S A THRILLING READ BUT
THERE'S A SECTION ON LEGISLATIVE
PROPOSALS AND RECENT ONES
INCLUDED LIKE GIVING SSA THE
AUTHORITY TO REFER INDIVIDUALS
TO VR WHICH WE DON'T HAVE THE
AUTHORITY TO AND IF YOU'RE
RECEIVING SSI AND UNDER 21 OR
MAYBE 24 HAD, WE WON'T COUNT THE
EARNINGS.
WE PROPOSED CHANGING THE
STRUCTURE TO A TIERED STRUCTURE
INSTEAD OF ALL OR NOTHING AND
PROPOSED ELIMINATING THE
MAINTENANCE RULES FOR SI AND
OVER CHANGES AND CHANGES LIKE
THAT CAN'T BE DONE BY SSA ALONE.
THEY DO REQUIRE LEGISLATION AS
WELL AS CHANGES TO THOSE
EARNINGS LIMITS AND ASSET
LIMITS.
I KNOW IT'S FRUSTRATION TO EIGHT
OF PEOPLE SO I WANT TO MENTION
THAT AND AS A RESULT OF THE
PANDEMIC AND THINGS GOING ON AND
RECENT EXECUTIVE ORDERS WE'RE
WORKING ON A BETTER CUSTOMER
EXPERIENCE AND WORKING ON BETTER
INTERNET OPTION OR ONLINE
PRESENCE AND ONLINE PRESENCE FOR
PEOPLE TO DO THINGS SO THEY
DON'T HAVE TO COME IN THE OFFICE
BUT FIELD RECEIVES AREN'T GOING
ANYWHERE BUT WE WANT TO MEET
PEOPLE WHERE THEY ARE.
ALSO PART OF THAT IS PART OF OUR
RULES AND REGULATIONS HAVE
REQUIRED WHAT SIGNATURES AND
WE'RE ELIMINATING THE NEED FOR
SIGNATURES ON A LOT OF OUR FORMS
AND THAT WILL GO A LONG WAY
TOWARDS HELPING US BE MORE
ACCESSIBLE IN THE 21st CENTURY.
THE REST OF THE SLIDES ARE
RESOURCES AND FACT SHEETS ON
DISABILITY DETERMINATION,
RESOURCE FOR PROFESSIONALS AND
MEDICAL AND SCHOOL PROFESSIONALS
AND OTHER THINGS LIKE TICKET TO
WORK PROGRAM.
WE ALSO HAVE A SPECIFIC YOUTH
PORTAL THAT'S AN SSA.gov/YOUTH
FOR YOUTH RECEIVING SSI AND
WE'RE NOW 40% OF CHILDREN LOSE
BENEFITS AT A CERTAIN PAGE.
WE HAVE A LOT OF RESOURCES OUT
THIS.
I HOPE YOU CAN ALL LOOK AT
THESE, IF NOT, PLEASE FEEL FREE
TO REACH OUT TO ME AND IT YOU
FOR YOUR TIME.
I'M SORRY IF I WENT TOO LONG AND
I'M ABLE TO ANSWER QUESTIONS
TOO.
>> THANK YOU, WE APPRECIATE THE
INFORMATION.
WE HAVE A COUPLE MINUTES.
WE HAVE A COUPLE PEOPLE WAITING
TO COMMENT AND ONE OF THEM I'M
GOING TO READ BUT WE'LL START
WITH PAUL WANG.
DR. WANG.
>> DR. HEMMETER FOR A DETAILED
PRESENTATION.
I APPRECIATE YOUR MENTION OF THE
ABLE ACT AND THE ABLE ACCOUNTS
THAT HELPS AS MANY PEOPLE AS
POSSIBLE WILL BE ABLE TO TAKE
ADVANTAGE.
I WANTED TO COMMENT ON THE ASD
LISTING IT CLOSELY PARALLELS
DIAGNOSTIC CRITERIA FOR AUTISM
BUT LOOKS LIKE IT PARALLELS
OUTDATED CRITERIA.
THE NEWEST EDITION OF THE
DIAGNOSTIC BIBLE, IF YOU WILL,
INCLUDES SENSORY SYMPTOMS.
SENSORY SYMPTOMS CAN BE VERY
IMPAIRING FOR INDIVIDUALS WITH
AUTISM.
IT'S NOW PART OF THE OFFICIAL
DIAGNOSTIC CRITERIA AND SUGGEST
THE LISTING SHOULD INCORPORATE
THAT.
>> THANK YOU, I'LL TAKE THAT
BACK TO OUR OFFICE OF DISABILITY
POLICY.
I DON'T KNOW WHAT THEIR SCHEDULE
FOR UPDATING THE PARTICULAR
LISTING BUT I WILL NOTE THAT.
HOPEFULLY I COPIED THE RIGHT ONE
AND NOT AN OUTDATED ONE BUT I'LL
BRING THAT BACK, THANKS.
>> NEXT I'M GOING TO READ
QUESTION AND COMMENT.
I WANT TO THANK YOU VERY MUCH
FOR YOUR COMMENT I'LL READ IT
WORD FOR WORD.
DR. HEMMETER THANK YOU FOR THE
INFORMATIVE PRESENTATION I'M
WRITING AS AN ADULT ON THE
SPECTRUM WHO IS A PARENT OF
SEVERAL DISABLED CHILDREN
SEVERAL HAVE DIAGNOSES OF
AUTISTIC DISCOVERED AND ONE WAS
A PREVIOUS SSI PARTICIPANT AND I
WANT TO COMMUNICATE THAT
SPEAKING WITH THE SSA IS
BURDENSOME.
YOUR PROCESSES ARE OFTEN
INTIMIDATING AND COGNITIVELY
INACCESSIBLE.
A CHILD DROPPED WAS DROVE OFF
SSI DURING THE PREVIOUS
ADMINISTRATION BEFORE THE IT
PANDEMIC DESPITE STILL VERY MUCH
QUALIFYING AND VERY MUCH STILL
NEEDING IT.
THE REASON FOR WHATEVER REASON
YOU ALL SENT A REQUEST FOR A
SLEW OF DOCUMENTATION TO
DETERMINE IF THE CHILD REMAINED
ELIGIBLE, UNQUOTE.
MOST THE THINGS THEY ASKED FOR
ARE THINGS I DIDN'T HAVE AND
DON'T EVEN KNOW HOW TO GET.
SEVERAL WERE NOT NECESSARILY
APPLICABLE TO MY CHILD.
THERE WAS NO CONCESSION FOR THE
FACT I AM MYSELF DISABLED AND
HAVE TROUBLE WITH EXECUTIVE
FUNCTION AND DETERMINING YOU
NEEDED AND REQUESTING AND
SUBMITTING.
THERE WAS NO WAY OFFERED FOR ME
TO COMMUNICATE WITH A HUMAN
BEING BEFORE HAND TO GAIN
CLARIFICATION ON WHAT OTHER
ITEMS WOULD BE ACCEPTABLE AND
NONE HAD TO DO WITH INCOME AND
ASSETS AND VARIOUS REQUEST FOR
RECORDS AND DO YOU KNOW HOW
INTIMIDATING IT COMMUNICATING
WITH SSI AND I PROCEEDED NOT TO
PROCEED AND MY CHILD'S COVERING
LAPSE AND THE ONLY DIFFERENCE IS
YOU'RE ALL ASKING FOR MORE AND
HAD BEEN APPROVED UPON INITIAL
APPLICATION.
MY CHILD IS AUTISTIC AND GETTING
OLDER AND SSI MEDICAID WOULD
HAVE BEEN CRITICAL AND NO DON'T
HAVE IT AND I KNOW I'M NOT ALONE
ALONE.
IT NEEDS TO BE FIXED.
JEFFERY, DO YOU HAVE ANY
COMMENTS OR RESPONSES TO THAT?
>> I DO WANT TO SAY I'M SORRY TO
HEAR THE EXPERIENCE WASN'T GOOD.
I DO THINK I'LL TAKE BACK THE
COMMENT PARTICULARLY ABOUT
MAKING SURE TA THINGS ARE NOT
ALWAYS DISCUSSIBLE TO THE
PARENTS OF INDIVIDUALS.
FOR EVERYONE INVOLVED WHAT WAS
DESCRIBED WAS A MEDICAL
CONTINUING DISABILITY REVIEW OR
RE-DETERMINATION.
THIS IS PART OF WHAT SSA DOES IS
WHEN SOMEBODY'S AWARDED
BENEFITS, WE NEED TO REVIEW THE
CONTINUED ELIGIBILITY BY LAW.
THESE ARE CDRs OR
RE-DETERMINATIONS AND WHAT WE'RE
LOOKING FOR IN MOST CASES ARE
MEDICAL IMPROVEMENT IS THE
STANDARD FOR POST FOR CHILDHOOD
DISABILITY REVIEWS AND ADULT
ONES.
AND CONGRESS HAS ACTUALLY
APPROPRIATED A SIGNIFICANT
AMOUNT OF MONEY FOR THESE WHAT
ARE CALLED PROGRAM INTEGRITY
ACTIVITIES AND THEY'RE
LEGISLATIVELY REQUIRED.
I'M SORRY IT TURNED OUT THAT
WAY.
I WOULD ENCOURAGE YOU TO REAPPLY
AT THIS POINT.
AGAIN, I THINK THIS IS ONE THING
THAT MIGHT BE LOST FOR MANY
PEOPLE THOUGH AT ONE POINT
YOU'RE DETERMINED NOT ELIGIBLE,
YOU MAY STILL BE ELIGIBLE IN THE
FUTURE OR THERE ARE TECHNICAL
REASONS FOR DENIAL AND THINGS
LIKE THAT THAT CAN BE APPEALED
BUT ALSO NEW APPLICATIONS CAN BE
TAKEN ON FOR CLAIMS LIKE THAT.
I WILL TAKE BACK AND LET THE
COMMUNICATION OFFICE OF THE
COMPONENTS ABOUT THE CONCERNS
YOU EXPRESSED ABOUT TE
COMMUNICATION.
WHAT I'M ALSO HEARING IS AN
EXPLANATION IS PENEEDED.
>> THANK YOU FOR YOUR
PRESENTATION AND MY APOLOGY TO
THE THREE PEOPLE WE HAVE
QUESTION AND COMMENTS WE HAVE TO
MOVE ON TO THE NEXT SEGMENT OF
THE PROGRAM AND AN APPRECIATE
SSA COMING TODAY.
I ALSO APPRECIATE HEARING FROM
MEMBERS THIS COMMITTEE ABOUT
THIS IT CHALLENGES IN
NEGOTIATING THE SYSTEM AND SSA
WILL BE ABLE TO TAKE THOSE
COMMENTS BACK AND SEE WHAT THEY
CAN DO TO A MEMELIORATE THEM AND
NEXT SUSAN DANIELS IN AN UPDATE
AS THE NATIONAL AUTISM
COORDINATOR.
SUSAN.
>> I'M GOING TO GIVE YOU AN
UPDATE ABOUT ACTIVITIES AROUND
THE FEDERAL GOVERNMENT AND OUR
RECENT REPORT TO CONGRESS AND
THE PURPOSE IS TO SHARE
INFORMATION YOU MAY NOT HEAR
OTHERWISE THROUGH PEOPLE ON OUR
COMMITTEE.
SO FIRST I'M GOING TO TALK ABOUT
THE REPORT TO CONGRESS THAT WAS
RECENTLY SUBMITTED AND THEN GO
THROUGH A FEW UPDATES AND YOU
HAVE MORE DETAILED INFORMATION
IN THE MATERIALS ONLINE.
THERE'S A NATIONAL AUTISM
COORDINATOR UPDATER PACKET WITH
INFORMATION AND LINK AND THE
INFORMATION'S IN THE SLIDES IF
YOU WANT TO GO BACK LATER.
SO FIRST AS MENTIONED IN THE
FALL, OUR OFFICE WAS INVOLVED IN
COORDINATING THE 2021 HHS REPORT
TO CONGRESS ON HEALTH OF WELL
BEING OF PEOPLE ON THE AUTISM
SPECTRUM AND THIS IS REQUIRED BY
TE AUTISM CARES ACT OF 2019 AND
THE REPORT WAS SUBMITTED IN THE
FALL AND NOW AVAILABLE ON THE
IACC WEBSITE.
WE PLACED IT ON THE WEBSITE.
YOU CAN ACCESS THE PDF THERE.
THE PURPOSE WAS TO LOOK AT
PHYSICAL AND MENTAL HEALTH
OUTCOMES, ACCESS TO AUTISM
RELATED SERVICES AND SUPPORTS
AND ACCESS TO AND INCLUSION IN
THE COMMUNITY.
SO THERE WERE FOUR ELEMENTS
REQUIRED BY CONGRESS IN THIS
REPORT INCLUDING LOOKING AT
DEMOGRAPHIC FACTORS, THE
POLICIES AND PROGRAMS AT VARIOUS
FEDERAL AGENCIES, COMPREHENSIVE
APPROACHES BEING USED IMPROVE
HEALTH OUTCOMES AND WELL BEING
FOR INDIVIDUALS ON THE AUTISM
SPECTRUM AND THEY ALSO ASKED
DEPARTMENTS AND AGENCIES TO MAKE
SOME RECOMMENDATIONS HOW TO
ENSURE BETTER COORDINATION
BETWEEN RELEVANT AGENCIES AND
SERVICE PROVIDERS.
SO THE REPORT COVERED THOSE
THINGS.
THERE WERE 22 FEDERAL
DEPARTMENTS AND AGENCIES WE
REACHED OUT TO AND CONTRIBUTES
TO THIS REPORT AND I'M NOT GOING
TO READ ALL THE NAMES AND
ACRONYMS AND THERE'S
PARTICIPATION ACROSS THE
GOVERNMENT INCLUDING SOME
AGENCIES ON THE COMMITTEE AND
NOT ON THE IACC AS WELL.
THE MAIN THING I WANT TO
HIGHLIGHT.
SO WE HAVE INFORMATION IN THE
REPORT ABOUT THE ACTIVITIES OF
THE AGENCIES AND DEPARTMENTS IN
THE REPORT BUT WE ALSO HAVE 23
RECOMMENDATIONS THAT WERE
DEVELOPED AS A PART OF THIS
REPORT AND THE FEDERAL
INTERAGENCY WORK GROUP FOR
AUTISM AN ALL FEDERAL WORK GROUP
FROM THE AGENCIES LISTED IN THE
SLIDES AHEAD OF THIS ONE
CONTRIBUTED TO PRODUCING THESE
RECOMMENDATIONS AND I DON'T KNOW
WHY 23 IS THE MAGIC NUMBER.
WE HAVE 23 RECOMMENDATIONS IN
THE STRATEGIC PLAN AND 23 IN THE
REPORT.
THIS RECOMMENDATIONS COVER SEVEN
AREAS THAT WERE ASKED FOR IF THE
LAW AND THOSE ARE LISTED HERE
INCLUDING INTERDISCIPLINARY
COORDINATION AND SCREENING AND
DIAGNOSIS AND EMERGENCY AND
ACUTE CARE, TREATMENT AND
CO-OCCURRING MENTAL HEALTH
CONDITIONS, CAREGIVER SUPPORTS
AND QUALITY OF LIFE.
THE 23 RECOMMENDATIONS I WON'T
READ THEM ALL OUT FOR YOU AS I
KNOW WE HAVE A LOT OF TO DO
TODAY BUT I DID WANT TO LIST
THEM ON THE SLIDES SO YOU CAN GO
BACK AND READ THEM IF YOU AREN'T
ABLE TO ACCESS THE REPORT RIGHT
AWAY.
BRIEFLY THE RECOMMENDATIONS
COVER DEVELOPING BEST PRACTICE
GUIDELINES FOR INTERDISCIPLINARY
COORDINATION ACROSS SERVICE
PROVIDERS, INCREASING
UNDERSTANDING OF AND ACCESS TO
SYSTEMS PROVIDING SERVICES AND
SUPPORTS.
CREATING COORDINATED SYSTEMS OF
MENTAL HEALTH SUPPORTS IN
VARIOUS SETTINGS.
DEVELOPING INTERSTATE AND
INTRASTATE HEALTH INFORMATION
EXCHANGES AND LEARNING FROM
EFFORTS AROUND THE WORLD THROUGH
VARIOUS ORGANIZATIONS, ENHANCING
DELIVERY OF COMMUNITY-BASED
SERVICES.
DEVELOPING EFFECTIVE APPROACH
FOR EARLY IDENTIFICATION AND
IDENTIFICATION IN ADULTS.
DEVELOPING BEHAVIORAL
INTERVENTIONS AND SUPPORTS IN
EDUCATIONAL SETTINGS.
DEVELOPING AND VALIDATING
MEASURES OF SOCIAL AND
BEHAVIORAL FUNCTIONING.
PROFESSIONAL PROGRAMS TO TRAIN
EDUCATORS, HEALTH CARE WORKERS
AND SERVICE PROVIDERS.
RESEARCH ON COMMUNICATION NEEDS
OF INDIVIDUALS ON THE SPECTRUM
AND IMPROVING ACCESS TO TOOLS
FOR COMMUNICATION.
DEVELOPING AND DISSEMINATING
HEALTH LITERACY RESOURCES TO
EMPOWER INDIVIDUALS TO TAKE
CONTROL OF THEIR HEALTH AND BE
AWARE OF EXISTING FEDERAL
POLICIES TO TAKE ADVANTAGE OF TO
HELP AUTISTIC INDIVIDUALS AND
REDUCING GAPS IN MENTAL HEALTH
SERVICES AND PRIMARY CARE.
ADDRESSING HEALTH CARE
DISPARITIES.
INCREASING PROVIDER AWARENESS
TOOLS AND TRAINING AND
CO-OCCURRING MENTAL AND
BEHAVIORAL HEALTH CONDITIONS AND
CREATING TAILORED SUPPORTS FOR
PEOPLE IN THESE AREAS.
DEVELOPING AND IMPROVING MENTAL
HEALTH AND PHARMACOLOGIC
INTERVENTIONS FOR PEOPLE
EXPERIENCING MAJOR CHALLENGES.
BEST PRACTICES RELATED TO
PERSON-CENTERED APPROACHES FOR
WANDERING.
ENHANCING SUPPORTS AND SERVICES
FOR CAREGIVERS, ACTIVITIES
RESEARCH AND RESOURCES THAT
CONTRIBUTE TO IMPROVING THE
OVERALL WELL BEING OF PEOPLE ON
THE AUTISM SPECTRUM FROM ACROSS
DIFFERENT AREAS THAT CONTRIBUTE
TO WELL BEING.
STRATEGIES TO PREPARE
ADOLESCENTS AND ADULTS FOR
GAINFUL EMPLOYMENT AND FOSTER
ANG SAYS TO CAREER PATHWAYS
WHICH HELPS WITH OVERALL WELL
BEING.
AND GATHERING ADDITIONAL
POPULATION-BASED DATA TO HELP
BETTER UNDERSTAND PREVENT AND
REDUCE CAUSES OF PREMATURE
MORTALITY.
THAT WAS A QUICK RUN DOWN.
THERE'S MORE INFORMATION IN THE
REPORT.
THIS IS AVAILABLE ONLINE ON OUR
WEBSITE.
NEXT I'M GOING TO MOVE TO
FEDERAL ACTIVITIES TO SHARE
BRIEF UPDATES PERFECT PARTS OF
PERFECTLY COMMITTEE S AND
ENTITIES YOU MAY NO HEAR ABOUT
WORK GOING ON.
PRESIDENT BIDEN APPOINTED THE
U.S. SPECIAL ADVISORY ON
INTERNATIONAL DISABILITY RIGHTS
WHICH REINSTATED THIS ROLE TO
WORK ON FOREIGN DIPLOMACY AND
ASSISTANCE TO PROTECT THE RIGHTS
OF PEOPLE WITH DISABILITIES
AROUND THE WORLD AND A
PROCLAMATION ON THE
INTERNATIONAL DAY OF PERSONS
WITH DISABILITIES.
THE LINK ARE PROVIDED HERE AND
IN YOUR MATERIALS.
AS OUR OFFICE WAS LOOKING AT
INFORMATION FOR PORTFOLIO
ANALYSIS, WE LEARNED THE DEFENSE
ADVANCED RESEARCH PROJECTS
AGENCY, OR DARPA PART OF THE
DEPARTMENT OF DEFENSE, WHICH IS
ON OUR COMMITTEE BUT DARPA
SPECIFICALLY IS NOT ON THE
COMMITTEE, FUNDED A RECENT
PROJECT ON AUTISM AND WANTED TO
GIVE YOU AN UPDATE ON THE RECENT
PROJECT APPLYING MACHINE
LEARNING TO -- TO APPLY
SCREENING AS AN EARLY TOOL AND
INCREASE ITS ABILITY TO IDENTIFY
PEOPLE ON THE SPECTRUM AS WELL
AS POTENTIALLY REDUCING
DISPARITIES.
THE NATIONAL SCIENCE COMMITTEE
HAS A COUPLE RECENT OR CURRENT
ANNOUNCEMENTS, FUNDING
ANNOUNCEMENTS OUT.
THE NSF CONVERGENCE ACCELERATOR
PROGRAM NAMED ENHANCING
OPPORTUNITIES AS A THEME FOR
THIS YEAR AND SO THEY ARE ACCEPT
ACCEPTING APPLICATION AND THIS
INCLUDES COMMUNICATION AND
ASSISTIVE TECHNOLOGIES AND
CALLING FOR RESEARCH INSTITUTES
AND EXPANDING EDUCATIONAL UP THE
AND IMPROVE OUTCOMES THAT FOCUS
ON ARTIFICIAL TECHNOLOGY AND
INCLUDING THOSE PEOPLE WITH
DISABILITIES.
THE NATIONAL COUNCIL ON
DISABILITY DID A COUPLE THINGS.
THEY HAVE A NEW REPORT ON THE
IMPACT OF COVID-19 ON PEOPLE
WITH DISABILITIES YOU'LL WANT
LOOK AT ISSUED IN OCTOBER AND
SENT A LETTER THE LEADERS AT HE
NIH HAD AND THE AGENCY OF HEALTH
CARE AND QUALITY AND CONSIDER
DESIGNATING PEOPLE WITH THESE
DISPARITIES AS A HEALTH
DISPARITY POPULATION.
THERE'S A NEW EVACUATE PLAN WITH
WORK ONGOING.
THE INTERAGENCY COMMITTEE ON
DISABILITY HAS A TOOL KIT ON
ACCESS AND QUALITY ON PEOPLE
WITH DISABILITIES AND THERE'S
THREE NEW THEMES THEY HAVE
IDENTIFIED FOR.
ACTIVITIES INCLUDING EQUITY AND
DISABILITY AND COVID-19 AND
DISABILITY STATISTICS AND HAVE
WEBINARS AVAILABLE.
THE IT RAISE FAMILY CAREGIVER
ADVISORY COUNCIL WILL HOLD THEIR
FIRST JOINT MEETING TO SUPPORT
GRANDPARENTS RAISING
GRANDCHILDREN IN JANUARY.
ON JANUARY 25 AND WE PROVIDED
THE LINK IN CASE ANYONE'S
INTERESTED IN THAT.
THE INTERDEPARTMENTAL SERIOUS
MENTAL ILLNESS COORDINATING
COMMITTEE DISCUSS THEIR RECENT
REPORT TO CONGRESS AT THEIR LAST
MEETING IN DECEMBER.
THE FEDERAL COMMUNICATION
COMMISSION HAS AN ADVISORY
COMMITTEE AND HAVE A SET OF
RECOMMENDATIONS FROM CALLED
CONCERNS AND LESSONS LEARNED
REGARDING COMMUNICATION ACCESS
FOR PEOPLE WITH DISABILITIES
DURING THE PANDEMIC AND THAT CAN
BE ACCESSED ONLINE AS A PDP.
-- PDF AND THREE OTHER
NON-GOVERNMENT ACTIVITIES AND P
CORI HAD 2019 LEGISLATION THAT
ASKED THEM TO INCLUDE RESEARCH
ON INTELLECTUAL AND DEVELOPMENT
DISABILITIES AS A PRIORITY TOPIC
AND THEY RECENTLY HOSTED A
COUPLE WORK SHOPS ON THIS TOPIC
AND THEY HAVE A CURRENT FUNDING
OPPORTUNITY ANNOUNCEMENT CALLED
COMPARATIVE EFFECTIVENESS OF
INTERVENTIONS TARGETING MENTAL
HEALTH CONDITIONS IN INDIVIDUALS
WITH INTELLECTUAL AND
DEVELOPMENT AA AAL DISABILITIES AND
ANYONE WHO IS INTERESTED IN
COMMENTING ON THE RESEARCH
AGENDA CAN ACCESS WITH THE LINK
AND YOU'RE WELCOME TO PROVIDE
THE COMMENTS AND THE AMERICAN
ACADEMY OF PEDIATRICS ISSUED A
REPORT ON PROMOTING THE
PARTICIPATION OF CHILDREN AND
ADULTS WITH DISABILITY AND
SPORTS AND RECREATION AND
PHYSICAL ACTIVITY IN THE JOURNAL
OF PEDIATRICS IN DECEMBER AND
WANTED TO POINT THAT OUT TO
ANYONE WHO MAY BE INTERESTED IN
THAT.
AND LAST THE NATIONAL ACADEMIES
OF SCIENCES, ENGINEERING AND
MEDICINE HOSTED A RECENT
WORKSHOP CALLED CHALLENGES AND
OPPORTUNITIES FOR CREATING AN
OPTIMAL CARE SYSTEM FOR
INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENT DISABILITIES.
THIS IS A QUICK RUN DOWN THAT
MAY BE RELEVANT TO US AS WE WORK
ON THE EVACUATE PLAN AND POR YOU
FOR YOU ALL AND HAPPY IT ANSWER
QUESTIONS IF ANYONE HAS ANY.
>> WE'LL GO TO OUR PLANNED
BREAK.
WE'LL TAKE A 10 MINUTE BREAK.
WE RECOGNIZE ZOOM ALL DAY CAN BE
GRUELING SO ENCOURAGE EVERYONE
TO USE THIS OPPORTUNITY TO GET
UP, WALK AROUND AND GET A DRINK,
TAKE CARE OF YOURSELF AND WE'LL
SEE YOU BACK AT 11:13 FOR
RESUMING WITH SUSAN WITH IACC
COMMITTEE BUSINESS.
>> WE'LL START ABOUT IACC
COMMITTEE BUSINESS NOW.
SO FOR BUSINESS TODAY, WE ARE
GOING TO GIVE YOU A BELIEVE
PRESENTATION ON THE AUTISM
RESEARCH DATABASE.
THIS WAS REQUESTED AS SOMETHING
TO HELP OUR COMMITTEE MEMBERS
UNDERSTAND HOW THEY CAN ACCESS
INFORMATION ON THE PROJECTS THAT
OUR OFFICE COLLECTS ON RESEARCH.
SO WE WILL HAVE SOMEONE FROM OUR
TEAM DR. FERARA WILL PRESENT AND
TALK ABOUT THE STRATEGIC PLAN
UPDATE TODAY.
AS YOU KNOW, WE DID A PUBLIC
REQUEST FOR INFORMATION TO GET
OPINIONS FROM THE COMMUNITY
ABOUT WHAT THEY WOULD LIKE TO
SEE IN THE NEW STRATEGIC PLAN
AND GO THROUGH THE REVIEW AND
PUT TOGETHER MAJOR THEMES.
WE'LL TALK ABOUT AND WILL ALSO
TALK ABOUT THE BUDGET
RECOMMENDATION FOR THE STRATEGIC
PLAN SO WE'RE WORKING STEP BY
STEP THROUGH GETTING THE
STRATEGIC PLAN DONE AND LATER IN
THE DAY WE'RE GOING TO TALK
ABOUT THE SUMMARY OF
CONVENIENCES.
AND WE HAVE THE 2020 ADDITION AS
WELL AS THE 2021 WHICH WE'LL
TOUCH ON TODAY BUT MAINLY WORK
ON THE 2020.
SO FIRST, I'M GOING TO TURN IT
OVER TO DR. FERARA FROM MY
OFFICE TO PRESENT THE OFFICES
AUTISM RESEARCH DATABASE THAT
SHARES INFORMATION ABOUT THE
PORTFOLIO ANALYSIS.
KATRINA, WELCOME.
>>TODAY WE JUST WANT TO PROVIDE
A REALLY BRIEF INTRODUCTION TO
OUR AUTISM RESEARCH DATABASE.
THE ARD AS WE CALL IT.
AND WE WANT TO HIGHLIGHT SOME
WAYS WE MAY THINK BE USEFUL.
IT'S A PUBLICLY AVAILABLE
RESOURCE THAT PROVIDED
COMPREHENSIVE INFORMATION ABOUT
THE STATUS OF ALL OF AUTISM OF
FUNDING AMONG FEDERAL AGENCIES
AND PRIVATE ORGANIZATIONS.
AND IT'S A TOOL THE IACC CAN USE
AS THEY TAKE OF RESEARCH AND
PRIORITY AREAS TO HIGHLIGHT IN
THE UPCOMING STRATEGIC PLAN
UPDATE WHICH WE'LL TALK ABOUT IN
A BIT.
THE ARD IS AVAILABLE ON THE
WEBSITE FROM THE IACC HOME PAGE
YOU CAN FIND IT UNDER THE TAB
FOR FUNDING THAT'S SHOWN HERE
WITH THE RED ARROW.
THE COMPLETE DATA SET THAT WENT
INTO CREATING A REPORT GETS
UPLOADED TO THE ARD.
FOR EVERY SINGLE PROJECT THAT'S
INCLUDED IN THE REPORT, THE
FOLLOWING ARE LISTED IN THE ARD.
THE FUNDING AMOUNT FOR THE
PROJECT, THE FUNDER, THE
PRINCIPLE INVESTIGATOR OF THE
WORK AND A DESCRIPTION OF THE
PROJECTS SO YOU CAN LEARN MORE
ABOUT THE AIMS AND THE METHODS
OF THE RESEARCH.
THE INSTITUTION AND LOCATION
WHERE THE PROJECT WAS CARRIED
OUT AND ALSO THE STRATEGIC PLAN
QUESTION OBJECTIVE AND SUB
CATEGORY THAT WORK ALIGNS WITH.
HERE'S AN EXAMPLE OF WHAT AN
INDIVIDUAL PROJECT STAGE LOOKS
LIKE WHEN YOU'RE IN THE ARD.
YOU CAN SEE ALL THE DETAILS
THERE INCLUDING LINKS TO THE
EXTERNAL FUNDER FOR THE PROJECT.
TO ILLUSTRATE THE AMOUNT OF DATA
THAT GOES INTO EACH PORTFOLIO
ANALYSIS REPORT CAN BE PRETTY
SPECIAL.
FOR THE YEAR 2018, THIS INCLUDED
DATA FROM 23 DIFFERENT AGENCIES
AND ORGANIZATIONS.
THIS TOTALLED OVER $394 MILLION
AND OVER 1500 DIFFERENT
PROJECTS.
THESE COVER ALL THE OBJECTIVE
AREAS IN OUR STRATEGIC PLAN.
SO THE ARD IS REALLY A USER
FRIENDLY AND INTERACTIVE WAY TO
VIEW AND UNDERSTAND ALL THIS BIG
AMOUNT OF DATA AND WE HAVE DATA
THAT GOES BACK OVER A DECADE SO
ON THE WEBSITE HERE YOU CAN SEE,
YOU CAN SELECT WHAT FISCAL YEAR
YOUR INTERESTED IN GOING IN
GOING BACK TO 2008.
IN THE SLIDES COMING UP I'LL
SHOW KEY FEATURES YOU CAN USE
FOR THE ARD.
SO THE ARD ALIGNS PROJECTS WITH
OBJECTIVES IN THE IACC STRATEGIC
PLAN.
IT PROVIDES AN ACCOUNT OF HOW
MUCH FUNDING HAS SUPPORTED
PROJECTS AND HIGHLIGHTS TRENDS
OVER THE YEARS.
THIS HAS BEEN USED BY THE IACC
TO HELP IN EFFORTS TO MONITOR
RESEARCH AND TRACK FUNDING MADE
FROM YEAR TO YEAR.
SO HERE YOU CAN SEE IN THE TAB
FOR STRATEGIC PLAN QUESTIONS,
THAT'S SHOWN WITH THE RED ARROW,
YOU CAN SEE THE PROPORTION OF
FUNDING THAT'S ALIGNED WITH EACH
OF THE DIFFERENT QUESTION AREAS.
SO HERE IN THIS PIE CHART FOR
2018 I'M SHOWING YOU HOW THAT
$394 MILLION WAS BROKEN DOWN
AMONG THE DIFFERENT QUESTION
AREA.
THERE'S ALSO INFORMATION BROKEN
DOWN BY FUNDER IN THE ARDs.
YOU CAN SEE THE TOTAL AMOUNT AND
DISTRIBUTION OF EACH FUNDER'S
PORTFOLIO ACROSS ALL THE
STRATEGIC PLAN QUESTION AREAS.
YOU MIGHT LOOK HERE IF YOU
WANTED TO SEE WHAT CERTAIN
RESEARCH AREAS WERE FOR
DIFFERENT FUNDERS.
THEN YOU CAN ALSO GET A
BREAKDOWN OF A PORTION OF
FUNDERS AND WHAT THEY'RE
CONTRIBUTING ACROSS ALL ASD
RESEARCH DOLLARS.
AGAIN, THAT'S WHAT I'M SHOWING
YOU HERE FOR 2018 FOR THAT $394
MILLION.
ALSO IN THE FUNDER TAB WE HAVE
HISTORICAL DATA.
FOR THE FUNDERS PARTICIPATING IN
THE REPORT FOR A LONG TIME, WE
HAVE DATA THAT GOES BACK TO
2008.
AND HERE I'M SHOWING YOU IN THIS
BAR CHART THE FUNDING HISTORY
FOR NIH SO YOU CAN LOOK AT THIS
AND SEE HOW FUNDING HAS
PROGRESSED OVER THE YEARS.
TO GET EVEN MORE DETAILED WE
HAVE A TAB FOR STRATEGIC PLAN
OBJECTIVES.
THESE ARE IMPORTANT AREAS WITHIN
EACH QUESTION AREA SO HERE I'M
SHOWING YOU THE TABLE FOR
QUESTION 1, WHICH IS ABOUT
SCREENING AND DIAGNOSIS AND THEN
YOU'LL GET A LISTING OF THE
DIFFERENT OBJECTIVE AREAS AND
YOU CAN CLICK ON THE PROJECTS
HERE AND THAT WILL POPULATE A
LIST OF ALL THOSE INDIVIDUAL
PROJECTS WITH THEIR DESCRIPTIONS
AND FUNDING AMOUNTS, ETCETERA.
YOU'LL ALSO GET A PIE CHART THAT
SHOWS YOU THE BREAKDOWN OF THE
PROPORTION OF THE DIFFERENT
OBJECTIVES AND HOW THEY
CONTRIBUTE TO THE TOTAL FUNDING
FOR THAT QUESTION AREA.
ANOTHER NEAT THING IN THE ARD IS
DATA BY GEOGRAPHIC LOCATION.
YOU CAN SEE WHERE PROJECTS ARE
TAKING PLACE, YOU CAN CLICK ON
THE MAP AND CLICK ON EACH STATE.
YOU'LL GET THE TOTAL FUNDING IN
THAT STATE AND A LIST OF ALL THE
PROJECT ARE HAPPENING THERE.
AND IN ADDITION TO THE U.S. WE
HAVE MAP OF THE WORLD BECAUSE
THERE ARE RESEARCH INVESTMENTS
THAT WE HAVE THROUGH OTHER
COUNTRIES SUPPORTING
INTERNATIONAL RESEARCH AND YOU
CAN CLICK ON THOSE COUNTRIES AND
GET A LIST OF THE PROJECTS THAT
ARE HAPPENING THERE.
ANOTHER COOL FEATURE IN THE ARD
IS THAT YOU CAN SEARCH BY ANY
KEY WORD OF YOUR CHOOSING.
YOU CAN TYPE IN THE SEARCH BOX
AT THE TOP.
YOU CAN TYPE IN THE KEY WORD
YOU'RE INTERESTED IN LOOKING FOR
AND WITHIN THAT YEAR YOU'LL GET
ALL THE PROJECT HAVE THAT TERM
IN THEIR TITLE OR ALSO IN THEIR
PROJECT DESCRIPTION.
SO HERE I'M SHOWING YOU THE
RESULTS FOR A KEY WORD SEARCH
FOR EPILEPSY FOR 2018 AND YOU
CAN SEE YOU GET A LIST OF 36
DIFFERENT PROJECT HAVE THAT TERM
AND THEN YOU CAN EITHER DOWNLOAD
THIS TO YOUR COMPUTER AND IN
EXCEL OR PDF FILE.
YOU CAN ALSO VIEW PROJECTS AS
ORGANIZED BY A PRINCIPLE
INVESTIGATOR.
HERE'S EXAMPLES FOR JOE PIVEN
AND YOU CAN EXPORT THIS TO AN
EXCEL OR PDF FILE.
LASTLY, I WANT TO DRAW YOUR
ATTENTION IT ANOTHER TAB IN THE
ARD.
EVERYTHING I'VE TOLD YOU ABOUT
IS IN THE UNITED STATES DATA TAB
AND WE ALSO HAVE A TAB FOR
INTERNATIONAL DATA.
AND THIS IS BASED ON A REPORT WE
PUT OUT IN 2016 WHERE WE
PARTNERED WITH THE U.K., CANADA
AND AUSTRALIA.
WE GOT DATA FROM OTHER COUNTRIES
TO LEARN MORE ABOUT THEIR OWN
INVESTMENTS IN ASD RESEARCH.
SO HERE WE HAVE THE DATA
ORGANIZED IN A SIMILAR WAY WITH
ALIGNMENT WITH THE STRATEGIC
PLAN QUESTIONS AND OBJECTIVES,
ETCETERA.
SO IN THE FUTURE, WE HOPE TO PUT
OUT OTHER REPORT LIKE THIS AND
HAVE INFORMATION FROM EVEN MORE
COUNTRIES REFLECTED IN THAT DATA
SET.
I WANT TO NOTE THIS IS A BRIEF
INTRODUCTION TO EVERYTHING IN
THE ARD.
JUST WANT TO DRAW YOUR ATTENTION
TO THE FACT THAT IN 2022 WE'RE
GOING TO PUBLISH OUR 2019-2020
PORTFOLIO ANALYSIS REPORT SO
WE'RE WORKING ON THAT NOW.
ONCE THAT REPORT'S OUT, WE'LL
UPLOAD ALL THAT NEW DATA TO THE
ARD AND IT WILL GET UPDATED.
THANK YOU VERY MUCH FOR YOUR
TIME AND APOLOGY FOR THE
TECHNICAL DIFFICULTIES AND IF
YOU HAVE QUESTIONS FOR THE ARD
OR PORTFOLIO ANALYSIS REPORT,
YOU CAN JUST SHOOT US AN E-MAIL
HERE.
THANK YOU.
>> ALICIA.
>> THANK YOU FOR PUTTING THIS
TOGETHER.
I KNOW IT'S A LABOR OF LOVE AND
A QUESTION FOR A USE OF THIS YOU
MAY NOT HAVE ANTICIPATED IS
TRACKING GRANTEES OVER TIME
BEING USEFUL.
I SEE EVERYTHING IS SELECTED BY
YEAR.
IS THERE A WAY TO MAKE IT SO YOU
HAVE A FIELD FOR LIKE ALL YEARS
AND SO THAT FUNDERS CAN TRACK
WHERE GRANTEES HAVE ALSO
RECEIVED FUNDING NOT JUST IN A
PARTICULAR YEAR BUT ACROSS YEARS
LIKE IF I DO A SEARCH FOR
GRANTEES IT'S ONLY FOUND IN THE
YEAR THAT PERSON WAS FUNDED.
DOES THAT MAKE SENSE?
CAN IT BE -- CAN THERE BE A
FIELD ADDED FOR ALL YEARS OR
SOMETHING LIKE THAT?
>> YES, WE DON'T HAVE THAT
CAPABILITY IN THERE RIGHT NOW
BUT WE COULD THINK ABOUT
BUILDING IN FOR THE FUTURE.
IF YOU WANTED THAT INFORMATION
RIGHT NOW, I WOULD SUGGEST
EXPORTING TO AN EXCEL FILE EACH
YEAR AND YOU THEN YOU CAN
COMBINE THE DATA ACROSS THE
YEARS.
THAT WOULD BE THE WAY TO GET
THAT INFORMATION QUICKLY BUT
IT'S DEFINITELY SOMETHING WE CAN
WORK ON INCORPORATING ON IN THE
FUTURE.
>> WE'RE HAPPY TO TAKE
SUGGESTIONS ON NEW FEATURES WE
CAN ADD.
AND OUR SENIOR WEB PROGRAMMERS
ARE ON THE MEETING AND FEEL FREE
TO SEND US SUGGESTIONS.
LARRY.
>> THANK YOU.
KATRINA, THANK YOU.
HAVING SUPPLIED SOME OF THE DATA
USED FOR THIS I DON'T KNOW IF A
LABOR OF LOVE IS QUITE THE RIGHT
DESCRIPTION.
IT'S A DAUNTING TASK AND IT
LOOKS LIKE Y'ALL HAVE DONE A
TERRIFIC JOB.
I ONLY HAVE ONE SUGGESTION AND
THERE'S NOTHING WORSE THAN
PUTTING A DATABASE OUT TO THE
PUBLIC AND RECEIVING EVERY
POSSIBLE ITERATION OF EVERYTHING
THAT COULD POSSIBLY BE DONE BUT
FOR THE MAJOR SLIDES YOU PUT
FORWARD AND SINCE SOME OF THIS
WILL BE PUBLIC FACING AND SOME
IS FOR THE FUNDING ON NIH, THAT
NIH PROVIDED OVER A PERIOD OF
YEARS I'M WONDERING IF YOU CAN
DO AN INFLATION ADJUSTMENT FOR
THAT GIVEN OUR INFLATION LEVEL
RIGHT NOW.
IT CAN BE EXTREMELY HELPFUL TO
PUT THINGS IN PERSPECTIVE.
IF IT'S NOT A TOTALLY ROBUST
INCREASE IN FUNDING, IT MAY LOOK
REALLY GOOD BUT IN REALITY MAY
NOT BE A WHOLE LOT AND RUNNING A
DISCRETIONARY GRANT PROGRAM
MYSELF I KNOW BASED ON INFLATION
WE'VE HAD REALLY SIGNIFICANT
LOSSES OVER THE LAST 10 YEARS
AND IT'S JUST A THOUGHT FOR YOUR
CONSIDERATION.
THANKS.
>> THANK YOU, THAT'S A GOOD
POINT NOW THAT WE HAVE OVER A
DECADE'S WORTH OF DATA.
WE NEED TO START CONSIDERING HOW
THAT CHANGES OVER TIME AS WELL.
IT'S LIKELY A CALCULATION WE CAN
WORK IN AND THEN PRESENT THE
DATA IN TWO DIFFERENT WAYS.
>> SOMETHING TO CONSIDER FOR A
FUTURE REPORT.
WELL, IT LOOKS LIKE WE DON'T
HAVE ANY OTHER QUESTIONS.
THANK YOU SO MUCH, DR. FERRARA
FOR SHARING THE INFORMATION AND
HOPEFULLY YOU'LL FEEL MORE
CONFIDENT ABOUT LOGGING INTO THE
ARD AND CHECKING WHAT WE HAVE
AND WE'LL LET YOU KNOW WHEN WE
UPDATE IT WITH THE LATEST THE
2020 DATA, WHICH JUST TO LET YOU
KNOW, THE REASON IT TAKES US A
WHILE TO GET ALL THE DATA IN IS
THAT EVERY FISCAL YEAR, IT TAKES
A WHILE FOR AGENCIES TO CLOSE
OUT THEIR DATA SET AND THEN WE
START WORKING WITH THE AGENCIES
TO GET ALL OF THAT ALIGNED AND
VERIFIED AND IT TAKES A WHILE TO
DO THAT STEP SO BY THE TIME THAT
ALL HAPPENS IT TAKES SOME TIME
BEFORE WE'RE ABLE TO HAVE THE
ANALYSIS DONE AND PUBLISH IT BUT
WE DO GET IT OUT AS SOON AS WE
CAN AND LOOK FORWARD TO GETTING
YOU A NEW DATA SET THIS YEAR.
THANK YOU.
NOW WE WILL MOVE INTO THE NEXT
SET OF ITEMS.
SO WE'RE GOING TO TALK ABOUT THE
STRATEGIC PLAN UPDATE AND THE
FIRST ITEM ON THE AGENDA HERE IS
TALKING ABOUT THE RECENT RFI.
WE REALLY APPRECIATE THE INPUT
THAT WE RECEIVED FROM THIS
PUBLIC FOR THE RFI.
IT'S VALUABLE TO HELP US KNOW
WHAT THE LATEST NEEDS AND
EMERGING CONCERNS ARE AND
PRIORITIES PEOPLE FEEL WOULD BE
REALLY HELPFUL INCLUDE IN THE
STRATEGIC PLAN SO WE GOT A
ROBUST RESPONSE WE HAVE 403
INDIVIDUALS AND ORGANIZATIONS
RESPOND TO THE RFI.
WE PUT OUT THE FIRST EVER
SPANISH VERSION AND RECEIVED TWO
RESPONSES ON THAT AND HOPE IN
THE FUTURE WE CAN DO MORE TO GET
THE WORD OUT WE ARE WELCOMING
RESPONSES THAT MAY COME FROM THE
SPANISH SPEAKING COMMUNITY.
AND WE WELCOME ALL COMMUNITIES
BUT THAT WAS OUR FIRST VENTURE
INTO EXPANDING IN THAT
DIRECTION.
WE ALSO WANT TO SHARE OUR TEAM
WENT THROUGH AND READ ALL THE
RESPONSES, REVIEWED THEM AND
THEN IDENTIFY MAJOR THEMES AND
TOPICS WITHIN EACH QUESTION AREA
WITH THE GOAL OF IDENTIFYING
THINGS WE MAY WANT TO INCLUDE IN
THE NEW STRATEGIC PLAN AND
HAVING A SPECIAL LOOK OUT FOR
ANYTHING THAT MIGHT BE NEW THAT
HAS NOT BEEN INCLUDED IN THE
STRATEGIC PLAN BEFORE.
EACH OF THE RESPONSES WAS
ASSIGNED TO ONE OR MORE THEMES
AND IF YOU WANT TO JUST READ THE
LIST OF THE THEMES DETAILED,
THERE'S A DOCUMENT IN THE
MATERIALS ON THE WEBSITE FOR
THIS MEETING AND WE PROVIDED AN
URL FOR THAT IN THIS SLIDE.
WE ALSO HAVE THE FULL TEXT
RESPONSES TO THE RFI AVAILABLE
ON THE WEBSITE FOR ANYBODY WHO
WANTS TO GO THERE AND READ THE
RESPONSES IN DETAIL.
OUR TEAM WAS ABLE TO IDENTIFY
CROSS-CUTTING THEMES.
THEMES THAT KEPT POPPING UP FOR
THE STRATEGIC PLAN AND WE
SUMMARIZED THEM HERE IN THIS
SLIDE.
THE THEMES THAT WE IDENTIFIED
WERE ACCESSIBILITY TO TREATMENTS
AND INTERVENTIONS.
THERE WAS A CONCERN ABOUT MAKING
SURE THAT ALL THESE THINGS ARE
ACCESSIBLE TO THE WHOLE
COMMUNITY.
A THEME OF DISPARITIES AND
DETECTION, DIAGNOSIS AND ACCESS
AND UTILIZATION TO ADDRESS THE
DISPARITIES AND CLOSE GAPS.
A THEME FOR ACCEPTANCE OF
AUTISTIC PEOPLE AND MORE
INFORMATION OF AUTISTIC PEOPLE
AND THEIR PRIORITIES AND
INTERESTS.
INCLUSION OF AUTISTIC VOICES IN
RESEARCH AND SERVICES.
LIFE SPANISH USE THAT AFFECT
ADULTS ON THE AUTISM SPECTRUM
INCLUDING THE AGING PROCESS.
IN THE PAST STRATEGIC PLANS WE
HAVE TALKED ABOUT THE TRANSITION
PERIOD IN EARLY ADULTHOOD WITH
REGARD TO THINGS LIKE INITIAL
EMPLOYMENT AND SO FORTH AND IN
THIS SET OF COMMENTS WE NOTED
THAT PEOPLE WERE TALKING ABOUT
WANTING MORE EMPHASIS ON LATER
ADULTHOOD AND WHAT HAPPENS NEXT.
PERSONALIZED APPROACHES THAT
INCLUDE ALL AUTISTICS INCLUDING
THOSE WITH SUPPORT NEEDS AND
THESE WERE THE CROSS-CUTTING
THEMES WE IDENTIFIED AND WE'VE
NOTED THEM WEAVING INTO THE NEXT
STRATEGIC PLAN.
AND AND SCREENING AND DETECTION
WERE REDUCING DISPARITIES IN
EARLY DETECTION FOR GIRLS AND
WOMEN AND ETHNIC OR RACIAL
MINORITIES OR OTHER UNDER SERVED
COMMUNITIES AND ADULTS.
THE NEED FOR MORE PRACTITIONER
TRAINING AND ACCESS TO DIAGNOSIS
AND SCREENING SERVICES AND
LISTED THE THEMES.
I CHOSE A FEW HIGHLIGHT HERE
THAT WERE MAJOR ONES THAT CAME
OUT IN QUESTION ONE.
EDUCATION AND STIGMA WAS A TOPIC
THAT WAS NEW AND HAS NOT
APPEARED IN PREVIOUS STRATEGIC
PLANS SO WE NOTED THAT.
DR. GORDON, DID YOU HAVE A
QUESTION?
BIOLOGY OF AUTISM AND THERE WERE
THEMES INCLUDING THE NEED FOR
MORE RESEARCH ON SEVERAL AREAS
INCLUDING CO-OCCURRING
CONDITIONS, FPHYSICAL, MENTAL
HEALTH AND INCLUSION OF AUTISTIC
INDIVIDUALS IN THE RESEARCH
PROCESS AND PLANNING WERE TWO
MAJOR THEMES THAT CAME OUT BUT
I'VE ALSO LISTED THE OTHER
THEMES WE IDENTIFIED.
IF YOU LOOK AT THE FULL TEXTUAL
SEE WHAT KINDS OF RESPONSES WE
GOT ON THESE VARIOUS AREAS AND
THE INCLUSION TOPIC WAS A NEW
ONE IN TERMS OF INCLUDING
AUTISTIC INDIVIDUALS IN THE
PLANNING OF RESEARCH.
AND CONDUCT OF RESEARCH.
SO RISK FACTORS AND LOOK AT
CONTRIBUTORS TO AUTISM.
IN THIS THE MAJOR THEMES
REFLECTED IN THE RFI ARE SOME
MEMBERS IN THE COMMUNITY
EXPRESSED THEY VALUE THE
RESEARCH ON GENETIC AND
ENVIRONMENTAL CAUSES OF AUTISM
WHILE OTHERS FELT THEY DIDN'T
FEEL THIS WAS A REALLY IMPORTANT
PRIORITY FOR FOCUS AND SOME OF
THE COMMENTS ADVOCATED FOR
RESEARCH ON HOW SOCIAL FACTORS
AND SOCIAL DETERMINATES OF
HEALTH AND THERE WERE THEMES
THAT WERE HIGHLIGHTED HERE
INCLUDING PROVIDING PERSONALIZED
AND TARGETED INTERVENTIONS FOR
THOSE WITH A VARIETY OF NEEDS
INCLUDING SUPPORTS FOR PEOPLE
WITH HIGH SUPPORT NEEDS SUCH AS
COMMUNICATION REPORTS AND
REDUCING NEGATIVE AFFECTS THAT
MAY BE ASSOCIATED WITH SOME
INTERVENTIONS AND IMPROVING
ACCESS TO INTERVENTION.
AND ALSO REDUCING ANY NEGATIVE
AFFECT MAY BE EXPERIENCED WITH
CERTAIN INTERVENTIONS.
FOR QUESTION 5 WHICH IS ABOUT
SERVICES, THE MAJOR THEMES
HIGHLIGHTED INCLUDED INCREASING
COMMUNITY ACCEPTANCE AND THEY
TALKED ABOUT INCREASING
ACCEPTANCE AMONG CARE PROVIDERS
AND OTHER PEOPLE IN THE
COMMUNITY WHO ARE SERVING THE
AUTISM COMMUNITY OR AUTISTIC
INDIVIDUALS AND THEIR FAMILIES.
THE DEVELOPMENT OF SERVICES THAT
MEET THE NEEDS OF UNDER SERVED
GROUPS SUCH AS GIRLS AND WOMEN
AND MINORITIES.
ACCESS TO SERVICES AND SERVICE
PROMOTE COMMUNITY INTEGRATION AS
WELL AS SERVICES FOR ADULTS.
QUESTION 6 ON LIFE SPANISH USE.
THE MAJOR THEMES INCLUDED
EMPLOYMENT FOR AUTISTIC PEOPLE
AND EMPLOYMENT FOR AUTISTIC
PEOPLE AND MAKE SURE SERVICES
CONTINUE ACROSS THE LIFE SPAN
AND SERVICE FOR PEOPLE WITH HIGH
SUPPORT NEEDS AND ADULT SERVICES
FOR COMMUNITY INTEGRATION.
THE NEW AREA WAS INCLUSION OF
OLDER ADULTS IN THINKING ABOUT
LIFE SPAN.
AND QUESTION 7 ON INFRASTRUCTURE
AND SURVEILLANCE, THE MAJOR
THEMES WERE ABOUT INCLUDING
AUTISTIC VOICES AND SERVICES AND
DEVELOPING A STRONG WORKFORCE TO
SUPPORT RESEARCH AND SERVICES
AND PROMOTING COLLABORATION
ACROSS AGENCIES AND
ORGANIZATIONS.
SO AGAIN IN QUESTION 7,
ACCEPTANCE OF INCLUSION WERE TWO
NEW THEMES FOR THIS PARTICULAR
QUESTION.
IN THE RFI WE ALSO INCLUDED
SPECIAL QUESTIONS ABOUT TWO
OTHER AREAS THAT WE KNOW THE
COMMITTEE WAS INTERESTED IN AND
THAT ARE TIMELY.
ONE WAS A QUESTION ABOUT
COVID-19 AND THE EFFECTS OF THE
PRESIDENT-ELECT ON THE AUTISM
COMMUNITY.
AND SO WHAT WE HEARD BACK FROM
THE COMMUNITY ABOUT THIS, I'VE
LISTED THE THEMES HERE THAT WERE
SHARED.
THE MAJOR THEMES RELATED TO
COVID-19 AND ITS IMPACT INCLUDED
SERVICES DISRUPTION OR CONCERNS
ABOUT SERVICE DISRUPTION DURING
THE PANDEMIC.
ENSURING BENEFITS THAT HAVE
EMERGED SUCH AS REMOTE OPTIONS
AND OTHER ACCOMMODATIONS WILL BE
ABLE TO BE CONTINUED AFTER THE
PANDEMIC.
AND ALSO THE MENTAL HEALTH
IMPACTS OF THE PANDEMIC
INCLUDING ISOLATION, LONELINESS,
DEPRESSION AND OTHER ISSUES THAT
HAVE EMERGED.
SO THOSE WERE THE MAJOR THEMES
THAT WE HEARD ABOUT IN THE
COVID-19 SECTION.
AND WE ALSO HAD A QUESTION ABOUT
DISPARITIES IN UNDER SERVED
COMMUNITIES.
AND WE LISTED SOME OF THE THEMES
HERE AND DISPARITIES IN UNDER
SERVED COMMUNITIES HAVE ALWAYS
BEEN A PART OF THE STRATEGIC
PLAN.
IT'S BEEN A GROWING PART OF THE
STRATEGIC PLAN BUT IN THIS
PARTICULAR RFI, THE MAJOR THEMES
THAT WE IDENTIFIED RELATED TO
DISPARITIES IN UNDER SERVED
COMMUNITIES INCLUDED ACCESS TO
SERVICES AND SUPPORTS FOR UNDER
SERVED COMMUNITIES, REDUCING
DISPARITIES AN SERVICE OUTCOMES
AND INCLUSION OF AUTISTIC PEOPLE
OF DIVERSE GENDERS AND RACIAL
AND ETHNIC MINORITY GROUPS AND
UNDER UNDER SERVED COMMUNITIES
IN RESEARCH, SERVICES AND
POLICY.
SO THOSE ARE THE MAIN THEMES I
HEARD.
I WANT TO THANK EVERYONE AGAIN
FOR CONTRIBUTING ALL THOSE WHO
TOOK THE TIME TO ACCESS THE FORM
AND SEND US YOUR FEEDBACK AND
YOUR THOUGHTS.
IT WILL BE REALLY VALUABLE FOR
THE COMMITTEE AND FOR OUR TEAM
AS WE HELP TO PREPARE THE
DERIVATIVE OF THE STRATEGIC
PLAN.
I HAVE A COUPLE OF QUESTIONS FOR
THE COMMITTEE BUT I WANTED TO
GIVE A FEW MOMENTS FOR ANY
THOUGHTS THE COMMITTEES WANT TO
SHARE ABOUT WHAT I DISCUSSED
ABOUT THE RFI HERE TODAY.
ALICIA.
>> HOW DID YOU DETERMINE WHAT
WAS A NEW THEME?
WAS IT TWO OR MORE PEOPLE
IDENTIFIED AS A NEED OR 10 ON
MORE PEOPLE.
HOW IS THAT DEFINED AS A NEW
THEME OR HOW DID YOU DEFINE
GROUPING THE THEMES TOGETHER?
>> SO IT WASN'T BASED ON NUMBERS
BUT SOME OF THEM WERE NEW IN
THAT WE CAN LOOK BACK AT OLD
VERSIONS OF THE STRATEGIC PLAN
AND IF THESE ISSUES WEREN'T
MENTIONED, FOR EXAMPLE, THE WORD
STIGMA, I DON'T THINK APPEARS IN
ANY PREVIOUS STRATEGIC PLAN BUT
THAT WAS A WORD THAT CAME UP IN
SOME OF THE RESPONSES AND SO WE
NOTED THAT.
THIS TYPE OF ANALYSIS IS A
QUALITATIVE ANALYSIS.
YOU HAVE A TEAM OF DIVERSE
PEOPLE LOOKING AT IT.
WE ALL LOOKED AT FROM OUR OWN
LENS AND TRIED TO IDENTIFY WHAT
ARE SOME OF THE EEMERGING
THEMES.
BUT I THINK ANY INDIVIDUAL WHO
LOOKS AT THE SAME INFORMATION
MAY COME UP WITH DIFFERENT
CONCLUSIONS.
THIS WAS OUR ATTEMPT TO BOIL
DOWN SOME OF THE MAIN POINTS
FROM A LARGE SET OF INFORMATION.
DINAH.
>> I APOLOGIZE FOR THE LATE
ARRIVAL.
I MISSED THE MESSAGE WE WERE
START AT A DIFFERENT TIME BUT I
THINK I'M UP TO SPEED NOW.
WHAT IS A CONCERN KNOW IS THE
LANGUAGE IN THE PRIOR DOCUMENT
AND WONDERING WHETHER WE WERE
GOING TO HAVE AN ADVISORY TEAM
OR SOME COLLABORATIVE GROUP
CONTRIBUTE INSIGHT INTO HOW
WE'RE USING LANGUAGE THROUGHOUT
THE STRATEGIC PLAN AND I WAS
ALSO WONDERING TOO WHEN WE TALK
ABOUT ACCESSIBILITY ISSUES AS IT
APPLIES TO SERVICES, WERE WE
ABLE TO DELINEATE THE DIFFERENCE
BETWEEN ACCESS TO SAY HEALTH
CARE SERVICES VERSUS ACCESS TO
SOCIAL SERVICE SYSTEMS VERSUS
DIAGNOSIS?
I'M SEEING ALL OF THOSE THINGS
IN MY PRACTICE SO I'M JUST
WONDERING THERE WAS DELINEATION
OR CLARITY THERE.
>> WITH THE LANGUAGE, OUR TEAM
HAS PAID SPECIAL ATTENTION TO
CHANGES IN THOUGHT ABOUT
LANGUAGE AND WE'RE GOING TO BE
TAKING THE FIRST STAB AT A DRAFT
AND SO YOU'LL SEE WHAT WE COME
UP WITH FOR LANGUAGE BUT THEN
THE COMMITTEE IS GOING TO HAVE A
CHANCE TO REFLECT ON THIS AND IF
YOU SEE ANYTHING THAT IS STILL A
CONCERN, WE CERTAINLY CAN TRY TO
ADDRESS IT BUT WE WILL BE TRYING
TO BE SENSITIVE ON LANGUAGE TO
BE AS INCLUSIVE AS POSSIBLE AND
ALSO CLEAR AND ACCURATE AS
POSSIBLE TO MAKE SURE PEOPLE
UNDERSTAND WHAT WE'RE TALKING
ABOUT.
SO WE HAVE TAKEN IN A LOT OF
FEEDBACK WE HEARD FROM VARIOUS
COMMUNITY MEMBERS AND AROUND THE
COMMUNITY AND FOR THE SAKE OF
TIME WE'RE GOING TO GIVE A FIRST
STAB TO THIS BUT WE'LL WELCOME
YOUR FEEDBACK ON IT.
IN TERMS OF ACCESSIBILITY, I SAW
THROUGHOUT THE COMMENTS THERE
WERE DIFFERENT USES OF THAT AND
MANY OTHER TERMS AND PEOPLE HAD
DIFFERENT NUANCES.
SO OUR TEAM WILL BE TRYING TO
WEAVE SOME OF THOSE DIFFERENT
THINGS IN IN DIFFERENT PARTS OF
THE STRATEGIC PLAN DRAFT BUT WE
WILL GIVE THE COMMITTEE A CHANCE
TO REFLECT ON IT TOO AND SHARE
IF YOU THINK THERE'S SOMETHING
IMPORTANT THAT WAS MISSED.
IT'S ALWAYS A CHALLENGE OF
TRYING TO PUT IN ALL THE DETAILS
AS MUCH AS YOU CAN BUT ALSO NOT
MAKING IT SO DETAILED YOU CAN'T
UNDERSTAND IT ANYMORE.
WE HAVE TO KEEP IT AT SOMEWHAT A
HIGH LEVEL SO IT'S
UNDERSTANDABLE BUT WE WILL TRY
TO REFLECT SOME OF THE DIFFERENT
DIVERSE OPINIONS FROM ACROSS THE
COMMUNITY.
>> MY PRIMARY CONCERN IS THAT SO
MANY INDIVIDUALS AND RECENT
QUALITATIVE RESEARCH HAVE
COMMUNICATED ESPECIALLY PCORI
FUNDED PROGRAMS HOW NAVIGATING
ACCESS THROUGH SYSTEMS IS SUCH A
HUGE DETERMINATE OF HEALTH.
I'M LOOKING FOR SOME ELEMENT OF
POLICY IN HERE AS IT APPLIES TO
SYSTEMS NAVIGATION.
SO THANK YOU FOR TAKING MY
QUESTION.
>> QUESTION 5 IS WHERE WE WOULD
TALK ABOUT SYSTEMS.
SO THE COMMENTS YOU PROVIDE AS
AN IACC MEMBER AS A STRATEGIC
PLAN IF YOU WANT TO NOTE WE'LL
TAKE NOTE OF THAT.
HELEN, DID YOU HAVE A QUESTION?
>> I CAN'T DO MY VIDEO SO YOU
HAVE TO IMAGINE ME.
>> THANK YOU.
>> I DO WANT TO SAY I THINK
THIS WAS AN ENORMOUSLY HELPFUL
PIECE OF WORK YOU AND YOUR TEAM
DID, SUSAN, IDENTIFYING THE
THEMES IS A TOUGH JOB AND I
THINK THE SUMMARY IS I WAS GOING
TO RESPOND TO YOUR QUESTION FOR
CONSIDERATION AND WHAT I WANT TO
RECOMMEND IS THE LAST TWO YEARS
HAS BEEN ENORMOUSLY DIFFICULT
PARTICULARLY FOR OUR COMMUNITY.
BUT I THINK SINCE TALKING ABOUT
A STRATEGIC PLAN NOT THINKING
ABOUT IT IN THE CONTEXT
EXCLUSIVELY LOOKING BACK TO
COVID-19 AND WHAT THE LAST TWO
YEARS WAS LIKE BUT STRATEGICALLY
THINKING ABOUT WHAT CAN WE PUT
INTO THE PLAN THAT WILL GET US
AHEAD OF WHAT IS LIKELY TO BE
THE NEXT PANDEMIC.
SO BE MORE FUTURE LOOKING RATHER
THAN REHASHING THE TERRIBLE
TIMES THAT WE'VE BEEN THROUGH AS
A GROUP.
SO THAT WAS WHAT I WOULD LIKE TO
RECOMMEND.
THANK YOU.
>> THANK YOU FOR SHARING THAT
PERSPECTIVE AND THERE'S BEEN
REPORTS IN PREPARING FOR FUTURE
EMERGENCIES AND SITUATIONS SO WE
CAN LOOK AT THAT BUT I
APPRECIATE THAT COMMENT ABOUT
TRYING TO KEEP IT FORWARD
LOOKING.
JALEN.
>> THANK YOU.
AM I ON?
I WANT TO THANK YOU SO VERY MUCH
FOR EMPHASIZING THINGS WITH
ADULTHOOD.
IT IS APE AREA THAT HAS BEEN
SORELY NEGLECTED IN SO VERY MANY
WAYS AND WE NEED TO ADDRESS IT.
I WOULD ALSO LIKE TO COMMENT ON
THE SOCIOLOGICAL ASPECT OF
THINGS.
WE DO NEED GOOD SCIENCE AND HOW
THAT GOES ALONG WITH THE HUMAN
BODY BUT ALSO HOW PEOPLE
PARTICIPATE IN COMMUNITY AND HOW
COMMUNITIES CAN PUT THINGS
TOGETHER WITHIN THEIR OWN
CONFINES THAT CAN HELP WITH
INCLUSION AND ALSO HELP PEOPLE
HAVE BETTER MENTAL HEALTH.
BUT IT ALSO HAS ONE COMPONENT
AND I AM SEEING THIS IS MISSING
AND I'D LIKE TO HAVE MORE OF A
CONVERSATION AT SOME POINT THAT
COULD BE OFFLINE ABOUT THE
IMPACT ON FAMILIES.
IF YOU CONSIDER TWO PARENTS AND
TWO SIBLINGS AS PEOPLE ARE
GROWING UP IT MAKES IT FIVE
TIMES THE NUMBER OF PEOPLE WE'RE
WORKING WITH IN OUR NUMBERS AND
SEEING A GREAT NUMBER OF PARENTS
AND SIBLINGS SUFFERING AS WELL
BECAUSE THEY'RE LIVES ARE
CHANGED.
IT DOESN'T MEAN THEY HAVE ANY
LESS LOVE OR CONCERN FOR THE
INDIVIDUAL ON THE SPECTRUM BUT
AN ENTIRE FAMILY IS IMPACTED
WHEN SOMEBODY IS ON THE AUTISM
SPECTRUM AND HOW TO ADDRESS
THOSE MENTAL HEALTH ISSUES.
ALSO THE AGING PROCESS FOR THE
PARENTS OF ADULTS THAT ARE ALSO
AGING AND THE IMPLICATIONS OF
WHAT THAT COULD BE EVEN ON
HOMELESSNESS.
BECAUSE IF PLANS ARE NOT MADE BY
FAMILY
FAMILIES THAN AN INDIVIDUAL MAY
BE BE SUBJECT TO LOSING FAMILY
HOME AND STRUCTURE AND THE
FINANCIAL SUPPORT TO BE ABLE TO
REMAIN IN THE HOME AND WE ARE
SEEING ALARMING STATISTICS IN
CONJUNCTION WITH HOMELESSNESS
ACROSS THE COUNTRY.
I HOPE WE CAN MAYBE PUT SOME OF
THOSE THINGS INTO PLAY AS WELL
BUT YOU'VE DONE A BEAUTIFUL JOB
OF PUTTING THINGS FORWARD FOR
US.
THANK YOU.
>> THANK YOU.
WE PLAN TO INCLUDE CARE GIVING
ISSUES AND THAT'S A WHOLE FAMILY
ISSUE AND THERE WAS A THEME OF
CAREGIVER SUPPORTS THAT ARE
NEEDED.
I THINK THAT THAT WILL BE
CAPTURED AND I AM AWARE OF THE
HOMELESSNESS SITUATION.
I HOPE WE CAN GET SOMEONE TO
COMMENT ON THIS IN THE FUTURE.
I'VE BEEN IN TOUCH WITH A
PARTNER IN NEW JERSEY WHO'S BEEN
TELLING ME ABOUT ISSUES WITH
YOUNG AUTISTIC PEOPLE ENDING UP
HOMELESS AND THERE'S OLDER
AUTISTIC PEOPLE ENDING UP
HOMELESS AND WOULD LOVE TO SHARE
ABOUT THAT AT A FUTURE MEETING.
IT'S ON OR RADAR AND THERE ARE
SOME DISCUSSIONS GOING ON AND
HOPE TO BE INCLUSIVE OF THOSE
ISSUES.
THANK YOU, MATTHEW.
DO YOU HAVE A QUESTION?
J
>> THANK YOU FOR THE WORK YOUR
TEAM HAS DONE.
RESPONDING TO THE TWO QUESTIONS
HERE, ARE THESE OUR ONLY OPTIONS
FOR CROSS-CUTTING OBJECTIVES?
IS THERE WAS ONE CROSS-CUTTING
OBJECTIVE IN THE PRIOR STRATEGIC
PLAN FOR FEMALES AND SEX AND
THESE ARE TWO POTENTIALS YOU PUT
FORWARD HOWEVER, MY COMMENTS I
PUT IN I'D LIKE US TO CONSIDER A
DIFFERENT CROSS-CUTTING
OBJECTIVE OR ADDITIONAL ONE TO
FOCUS ON COMMUNICATION.
BEING ONE OF THE TWO CORE
DOMAINS IN AUTISM IT'S OBVIOUS
COMMUNICATION DRIVES MANY
ASPECTS OF QUALITY OF LIFE,
DEVELOPMENT OF MENTAL HEALTH
CONDITIONS, CHALLENGING
BEHAVIORS AND THE ABILITY TO
ACCESS EDUCATION, MEDICAL CARE,
FAMILY AND COMMUNITY LIFE, THE
WORKPLACE AND INTERVENTIONS.
HOWEVER, I THINK IT'S FAIRLY
WELL RECOGNIZED THAT
COMMUNICATION HAS REALLY
RECEIVED AS A TOPIC VERY LITTLE
RESEARCH ATTENTION OR POLICY
FOCUS OR SERVICES IN TERMS OF
BOTH THE UNDERLYING BIOLOGIC
CHALLENGES IN GENETICS AND SO I
WANTED TO PROPOSE THAT AS A
POTENTIAL CROSS-CUTTING
OBJECTIVE THAT THIS STRATEGIC
PLAN COULD ADDRESS.
SO THANK YOU.
>> THANK YOU.
WE CERTAINLY HEARD A LOT OF
ABOUT COMMUNICATION AND THE
CROSS-CUTTING OBJECTIVE PURPOSE
IS ALLOWING OUR TEAM TO DO
SEPARATE TRACKING ON THE ISSUE
IN TERMS THE DOLLARS AND SO
FORTH.
WE ARE TRACKING AS SUB
CATEGORIES SOME OF THESE OTHER
TOPICS.
SO COMMUNICATION HAS ALREADY
TRACKED IN A DIFFERENT WAY.
WE'LL CERTAINLY GIVE SOME
THOUGHT TO HOW WE CAN HIGHLIGHT
COMMUNICATION.
IT DID COME ACROSS AS A STRONG
THEME AND WE ARE PLANNING TO
TALK ABOUT COMMUNICATION IN OUR
APRIL MEETING TO STAY TUNED.
>> MATT, THANK YOU SO MUCH FOR
BRINGING THE ISSUE OF
COMMUNICATION UP.
I THINK IT WILL BE IMPORTANT
FOR -- IT WOULD BE HELPFUL FOR
YOU, MATT AND OTHERS, TO TAKE A
LOOK AT WHERE COMMUNICATION IS
IN THE CURRENT PLAN OUT SHOULD
APPEAR IN MULTIPLE PLACES AND
WHETHER AS THE CROSS-CUTTING IS
SOMETHING WE'D APPRECIATE
FURTHER OPINIONS ON BUT I AGREE
WE ENSURE WE COVER IT IN
MULTIPLE PLACES IN THE STRATEGIC
PLAN.
I WANT TO TAKE ONE OBJECTION TO
THE NOTION THAT COMMUNICATION IS
INSUFFICIENTLY REPRESENTED IN
THE RESEARCH SPACE.
MY COLLEAGUES FROM NATIONAL
INSTITUTE OF DEAFNESS AND
COMMUNICATION DISORDERS FUND A
GREAT DEAL OF RESEARCH IN
COMMUNICATION AND AUTISM AS DO
WE AT NICHD AND OTHERS AT NIH
AND I KNOW IT'S A FOCUS OF OTHER
INITIATIVES AS WELL.
AND I CAN'T ARGUE IT'S
SUFFICIENT.
I CAN'T ARGUE THERE'S SUFFICIENT
RESOURCES IN THIS SPACE AND WE
CAN ALWAYS DO MORE.
BUT I DON'T THINK IT'S UNDER
REPRESENTED IN THE GRAND SCHEME
OF THINGS.
>> THANK YOU.
SO WE HAVE, I BELIEVE, A COUPLE
POLLS JUST TO SEE WHAT PEOPLE
THINK ABOUT THIS.
WHAT OUR TEAM WAS THINKING ABOUT
WAS TRYING TO CREATE A SECTION
THAT WOULD ADDRESS COVID-19
ISSUES IN THE NEW PLAN AND NOT A
QUESTION ONGOING FOREVER BUT
WOULD BE HIGHLIGHTED IN THE NEXT
STRATEGIC PLAN SINCE IT'S BEEN
AN ISSUE OF INTEREST AND A LOT
OF CONCERNS IN THE COMMUNITY AND
I APPRECIATE THE IDEA OF
THINKING ABOUT OUT AS A
FORWARD-FACING OBJECTIVE NOT
OBJECTIVE, FORWARD-FACING
DISCUSSION HOW WE CAN ALSO THINK
ABOUT THE FUTURE NOW THAT WE'VE
BEEN THROUGH WHAT WE HAVE AND
WE'VE LEARNED SOME LESSONS AND
THINGS HELPFUL FOR THE COMMUNITY
WHAT CAN WE DO ABOUT THOSE.
WE WOULD LIKE TO SEE WHAT THE
COMMITTEE'S THOUGHTS ARE ON
CONSIDER WHETHER DISPARITIES IN
UNDER SERVED COMMUNITIES IS A
CROSS-CUTTING THEME WE'D LIKE TO
BE TRACKING SIMILAR TO HOW WE
TRACK RESEARCH ON WOMEN AND
GIRLS.
IT'S SOMETHING OVERLAID ON TOP
OF THE OTHER OBJECTIVES BECAUSE
WOMEN AND GIRLS POPS UP IN EVERY
CATEGORY SO IT'S JUST AN
ADDITIONAL TRACKING.
IT'S NOT A DOUBLE COUNTING.
THAT'S SOMETHING OUR TEAM IS
INTERESTED IN POTENTIALLY DOING
BUT WANTED TO SEE HOW THE
COMMITTEE FEELS ABOUT IT.
IF THE TEAM CAN PUT UP THE POLL
I'D LIKE MEMBERS AND THIS
INCLUDES FEDERAL MEMBERS SO
FEDERAL AND NON-FEDERAL MEMBERS
CAN VOTE IN THE POLL.
THIS IS JUST AN OPINION POLL NOT
AN OFFICIAL COMMITTEE VOTE FOR
AN ACTION.
BUT IF YOU COULD JUST RESPOND TO
THE POLL QUESTIONS WE'D LIKE TO
GET A TEMPERATURE READ FROM YOU
ABOUT WHAT YOU THINK.
WE'LL GIVE A MINUTE AND ONCE YOU
THINK EVERYBODY HAS PUT IN YOUR
OPINIONS YOU CAN GO AHEAD AND
SHOW THE POLL ON ZOOM AND I'LL
DESCRIBE IT FOR VIEWERS ON
VIDEOCAST.
THE QUESTION WAS WOULD THE
COMMITTEE LIKE TO SEE' RESPONSE
TO THE COVID-19 AND 75% SAID YES
AND 25% SAID NO.
SOUNDS LIKE THE MAJORITY IS YOU
WOULD LIKE SOME DISCUSSION OF
COVID-19.
WE WILL PLAN TO DO THAT.
NUMBER 2 WOULD YOU LIKE TO TRACK
ACTIVITIES RELATED TO
DISPARITIES IN UNDER SERVED
COMMUNITIES AND IT WAS A 95% YES
AND 5% NO.
THAT'S ALSO THE MAJORITY OF THE
COMMITTEE.
OUR TEAM WILL TAKE THAT INTO
CONSIDERATION AND PLAN TO
INCLUDE THOSE IN THE FIRST DRAFT
AND WE'RE DOING A FIRST DRAFT
BECAUSE IF WE WERE ASSIGNING
PEOPLE IT WOULD TAKE LONGER TO
GET IT DONE.
WE'LL COME TO YOU WITH A DRAFT
AND YOU'LL HAVE A CHANCE TO
SHARE YOUR FEEDBACK ON IT.
THANK YOU.
THAT WORKED REALLY WELL.
I'M GLAD THAT WORKED OUT.
NEXT, I'D LIKE TO TALK WITH THE
BUDGET RECOMMENDATION CONGRESS
REQUIRES US TO INCLUDE IN THE
PLAN.
IN THE 2016 AND 2017 STRATEGIC
PLAN, THE COMMITTEE DECIDED TO
CALL FOR A DOUBLE OF THE 2015
ASD RESEARCH BUDGET WHICH AT THE
TIME THIS WAS THE AMOUNT OUR
TEAM HAD CALCULATED FROM ACROSS
BOTH FEDERAL AND NON-FEDERAL
ENTITIES WHO ARE FUNDING
RESEARCH ON AUTISM.
AND THE DOUBLING WOULD HAVE
RESULTED IN THE $865 LEVEL AND
WANTED TO SEE IF WE CAN REACH
THAT BY 2020 AND YOU'LL SEE
WHERE WE ARE RIGHT NOW.
WE HAVE TRACKED WHAT THE ACTUAL
SPENDING WAS COMPARED TO THE
STRATEGIC PLAN BUDGET
RECOMMENDATIONS.
THE BUDGET RECOMMENDATION IS IN
THE YELLOW BARS OR BARS TO THE
RIGHT AND THE BARS TO THE LEFT
IN THE BLUE ARE THE ACTUAL AND
WE HAVEN'T INCLUDE THE 2019 AND
2020 BUT THERE'S ABOVE $240
MILLION AND IT'S NOT NEAR THE
TOP OF THE BUDGET
RECOMMENDATION.
THE IACC'S RECOMMENDATION WAS
BASICALLY A 15% ANNUAL INCREASE
IN ASD RESEARCH FUNDING ACROSS
FEDERAL AND PRIVATE FUNDERS AND
THE REALITY WAS IT WASN'T AT
SUCH A STEEP LEVEL HOWEVER,
THERE HAS BEEN A CONTINUING
INCREASE.
SO MY QUESTION FOR THE COMMITTEE
IS WHAT SHOULD WE DO ABOUT THE
NEXT BUDGET RECOMMENDATION IN
THE NEW PLAN.
WE CAME UP WITH TWO OPTIONS AND
AN OTHER IF NEITHER IS
APPEALING.
SO OPTION 1, WOULD BE WE COULD
EXTEND THE TIME LINE ON THE
CURRENT RECOMMENDATION THAT WAS
BASED ON THE 2015 BUDGET AND SEE
IF WE CAN REACH $685 MILLION BY
2025 OR OPTION NUMBER 2 IS
RECOMMENDING A DOUBLING OF THE
RESEARCH FUNDING AMOUNT FOR 2020
WHICH IS GOING TO BE IN THE
NEIGHBORHOOD OF $130 MILLION TO
ASK FOR A DOUBLING OF THAT TO
$860 MILLION BY 2025.
AND OPTION 3 IS NEITHER ONE
APPEALS AND IF THE MAJORITY OF
THE COMMITTEE THINKS THAT THEN
WE MAY HAVE TO GO BACK TO THE
DRAWING BOARD FOR OTHER IDEAS
BUT WE'LL POLL YOU ON THIS AS
WELL.
IF THE TEAM CAN PUT UP THE POLL.
>> HAVE YOU A QUESTION.
>> HOW IS THIS RECOMMENDATION
USED IN BEING AMBITIOUS WHAT WE
WOULD LIKE TO SEE FOR FUNDING OR
TO BE MORE CONSERVATIVE AND HOPE
FOR THINGS TO GO.
I'M IN THE SURE WHAT MAKES THE
MOST SENSE.
I THINK EVERYBODY WOULD LIKE TO
SEE OPTION NUMBER 2 BUT THINK
HOW THE INFORMATION WOULD BE
USED I'D LOVE TO HEAR WHAT IS
THE MOST INFLUENCE --
INFLUENTIAL.
>> I ENCOURAGE OTHERS WHO HAVE
OPINIONS AND KNOWLEDGE ABOUT IT
TO CHIME IN AS WELL.
I DON'T HAVE A DEFINITIVE ANSWER
TO EITHER OF THOSE PARTS.
SO HOW IS THIS USED?
THE BUDGET RECOMMENDATION IS
REQUESTED BY CONGRESS.
WE HAVE CHOSEN AS SUSAN HAS
ARTICULATED TO GIVE A BUDGET
RECOMMENDATION SPECIFICALLY
ABOUT RESEARCH AS OPPOSED TO
ABOUT THE SUM TOTAL OF AUTISM
CARE BECAUSE IT'S SO HARD FOR US
TO FIGURE OUT EVEN WHAT THE SUM
TOTAL OF COSTS OF CARE AND
SERVICES FOR INDIVIDUALS FOR
AUTISM AT THE FEDERAL LEVEL ARE.
THAT'S BEEN ESSENTIALLY ACCEPTED
BY CONGRESS IN THE PAST.
NOW, HOW DOES CONGRESS USE IT?
WELL, THERE'S SOME PRACTICAL
IMPACT OF THESE NUMBERS.
THERE HAVE BEEN FOR EXAMPLE,
AUTHORIZATION BILLS INTRODUCED
INTO CONGRESS THAT AUTHORIZE THE
FEDERAL GOVERNMENT OR NIH OR
OTHER AGENCIES TO SPEND THAT
AMOUNT IN RESEARCH BY THE YEAR
2020.
I'M NOT AWARE ANY OF THOSE HAVE
ACTUALLY PASSED THOUGH SUSAN MAY
KNOW.
IF OUR LEGISLATIVE DIRECTOR HAS
ANY INPUT I'D BE HAPPY HEAR FROM
HER IF SHE'S ON THE LINE BUT
THEY'VE BEEN INTRODUCED WITH THE
EXPLICIT RECOMMENDATION THE IACC
RECOMMENDED IT.
BEFORE WE GET TOO EXCITE ABOUT
THE INTRODUCTION OR EVEN PASSAGE
OF AN AUTHORIZATION BILL, THE
AUTHORIZATION JUST GIVES THE
AUTHORITY TO SPEND THAT MONEY
BUT WE CAN'T ACTUALLY SPEND THE
MONEY UNTIL THE APPROPRIATIONS
HAVE BEEN MADE AND APPROPRIATORS
HAVE NOT RESPONDED WITH A
SIMILAR INCREASE TO THE RESEARCH
AGENCIES THAT WOULD ENABLE A
BUDGET OF THAT SIZE.
THAT'S AN ANSWER IN HOW IT'S
SEEN.
IT'S SEEN BY CONGRESS AS AN
ADVISORY OPINION WITH WEIGHT AND
THEY USE IT TO ATTEMPT TO
INCREASE THE RESOURCES AVAILABLE
FOR RESEARCH IN AUTISM ACROSS A
NUMBER DIFFERENT FEDERAL AGENCY.
IT IS HAVING AN IMPACT FROM THAT
PERSPECTIVE.
THE SECOND QUESTION IS MORE
CHALLENGING TO ASK.
WHAT'S THE MAGIC NUMBER OR WHAT
SHOULD WE BE SHOOTING FOR FROM
AN ADVISORY PERSPECTIVE.
IS IT INAPPROPRIATE OR
PROBLEMATIC TO SHOOT FOR THE
STARS SO HIGH IT BECOMES UNRAFLT
UNREALISTIC OR IF WE SET A MORE
MODEST NUMBER BECAUSE THAT
DOESN'T ADEQUATELY SPEAK TO THE
NEEDS OF THE COMMUNITY.
SO MY OWN OPINION IS WE SHOULD
LOOK AT WHAT WE'RE DOING AND
WHAT WE'RE NOT DOING FROM A
RESEARCH PERSPECTIVE AND MAKE AA
REASONABLE AND EDUCATED GUESS IN
WHAT WE CAN DO WITH MORE
RESOURCES AND TRY TO MATCH THE
RESOURCES TO WHAT WE'RE DOING.
THE DOUBLING IN 2020 WAS
COGNIZANT OF THAT.
MANY INDIVIDUALS HAVE COMMENTED
JUST A MOMENT AGO WE HEARD WE
NEED MORE RESOURCES PUT INTO
COMMUNICATION STUDIES.
THE INCREASED RESOURCES FOR
ADULTS WITH AUTISM WAS A PUSH WE
MADE AT IACC SEVERAL YEARS BACK
AND PUT RESOURCES INTO AT NIHM
AND OTHER AGENCIES.
I THINK WHEN WE THINK ABOUT THE
INITIAL DOUBLING, THAT WAS WHAT
MOST OF US HAD IN MIND.
ANYWAY, THAT'S MY BEST SHOT AT
SAYING, YEAH, I THINK THERE'S A
COST FOR REACHING TOO FAR AND A
COST FOR NOT FAR ENOUGH BUT IT'S
REALLY HARD TO KNOW EXACTLY
WHERE TO PUT THE NUMBER.
NOT ALL THAT HELPFUL BUT BACK TO
SUSAN.
>> DINAH, DO YOU HAVE A
QUESTION?
>> THE LAST TIME THERE WAS
CONVERSATION ABOUT THE BUDGET WE
DID REACH FOR THE STARS BECAUSE
OF THE MANIFESTED UNDER OF
RESEARCH AND WE WERE TRYING TO
GEAR UP TO CATCH UP.
I THINK THE VAST MAJORITY OF
PEOPLE UNDER 65 EXPERIENCING
COVID OUTCOMES WHICH ARE
NEGATIVE MANY ARE PEOPLE OF
COLOR AND OF COURSE AUTISM WOULD
BE INCLUDED IN THAT POPULATION
AND I THINK ALSO IF WE CAN
PROVIDE A CAVEAT WE'LL BE
FLIPPING THAT IMBALANCE BETWEEN
CAUSATION RESEARCH VERSUS
OUTCOME RESEARCH AND OUR FUNDERS
CAN SEE THE POTENTIAL FOR
RESEARCH THAT ACTUALLY CAN
ENHANCE OUTCOMES IN REAL TIME AS
COMPARED TO HISTORICAL MORE
EMPHASIS ON CAUSATION I THINK IT
WOULD BE EASIER TO JUSTIFY THE
BIGGER ASK, TO BE HONEST.
I THINK OPTION 2 ALSO
COMMUNICATES THE DIRE THE NEED
IN EVEN IF THE COME IN WITH A
LESSER AMOUNT THEY AWARE OF HOW
MUCH THE NEED IS INLIGHT OF THE
IMPLICATIONS MUCH COVID BUT I
APPRECIATE THE POINT ABOUT GOING
TOO BIG.
JAIL LEN DO YOU HAVE A COMMENT?
>> WE WERE ASKED TO INCREASE THE
PROPORTION OF FUNDS COMING
THROUGH NIH AND YOU CAN HELP
WITH MY VERBIAGE ON SOME OF THIS
SO GO FROM 2% ON THE AUTISM
BUDGET TO 4% OF THE AUTISM
BUDGET.
IT ISN'T A HUGE AMOUNT OF MONEY.
CAN WE GET IN ON THE GRANULAR
LEVEL WITH THIS TYPE OF TROKD
SAY WE WOULD LIKE TO SEE A
LARGER PERCENTAGE OF FUNDING
THAT WOULD BE GRANTED TO GO INTO
THIS RESEARCH THAT IS SORELY
NEEDED AND SORELY NEGLECTED?
>> SO A LARGER PERCENTAGE OF THE
FUNDING THAT COMES THROUGH THE
PROCESS OF NIH TO BE DIRECTED
TOWARD THE ISSUES FACING ADULTS
WITH AUTISM.
THAT'S WHAT WE TALKED ABOUT IN
THE PUBLIC COMMENTS I BELIEVE
FOUR OR FIVE YEARS AGO AS WE
WERE ASKED TO ADDRESS THINGS TO
INCREASE FROM 2% TO 4% OF WHAT
THE NIH BUDGET WAS.
DIRECTED TOWARD ADULT AUTISM.
>> JOSH, I DON'T KNOW IF YOU
HAVE COMMENTS.
>> I HAVE OPINIONS.
I'D LIKE TO HEAR FROM OTHERS AS
WELL.
WE'RE NOT TASKED WITH THAT LEVEL
OF GRANULARITY BY CONGRESS AND
IF THE COMMITTEE MAKES SUCH
RECOMMENDATIONS I WANT TO
CAUTION THOUGH THE DIFFERENCE OF
UNDERSTANDING RECOMMENDATION AND
THE DECISION MAKING POWER OF
THIS BODY WHICH IS THIS BODY
DOESN'T HAVE THE POWER BUT JUST
RECOMMENDATIONS AND GIVE A
BETTER UNDERSTANDING FROM THE
FEDERAL AND NON-FEDERAL PARTNER
PERSPECTIVE HOW DECISIONS ARE
MADE ABOUT FUNDING.
IT'S NOT LIKE WE SAY WE'LL SPEND
X PERCENT ON THIS OR ENHANCING
COMMUNICATION IN TOM.
-- AUTISM BUT WE LISTEN TO THE
RECOMMENDATIONS OF THIS
COMMITTEE IN TRYING TO INCREASE
AVAILABILITY AND DEMAND FOR
SOURCE FOR RESEARCH WHERE WE
RECOGNIZE GAPS OCCURRING.
I'M NOT SURE IF WE WERE TO GET
IN THE BUSINESS OF MAKING MORE
SPECIFIC RECOMMENDATIONS ABOUT
SPECIFIC AREAS, I THINK THIS
COMMITTEE WOULD GET QUITE BOGGED
DOWN IN DITCH AND POTENTIALLY
COMPETING RECOMMENDATIONS FOR
ADDITIONAL RESOURCES.
WHAT HAS BEEN EXCEPTIONALLY
USEFUL FROM THE CONGRESSIONAL
PERSPECTIVE AND THE PERSPECTIVE
OF FEDERAL AGENCIES IS HEARING
THE GENERALITIES AND YOU CAN SEE
THE RESULT OF THOSE GENERALITIES
AND SHOULD WE MAKE
RECOMMENDATIONS ABOUT THE
PERCENTAGE I DON'T THINK IT WILL
BE PRODUBLTHIVE AND --
PRODUCTIVE AND COMPLICATED
DISCUSSION ABOUT THE POTENTIALLY
COMPETING PRIORITY.
SHOULD WE MAKE A BUDGET
RECOMMENDATION OVERALL,
ABSOLUTELY.
AND SHOULD WE TAILOR THAT FOR
INFORMED BY WHAT WE'RE DOING FOR
EMPHASIS CHANGES?
ABSOLUTELY.
>> THANK YOU, JOSH.
JULIE, YOU HAVE A QUESTION AS
WELL.
>> SORRY TO PROLONG THE
DISCUSSION BUT JOSH YOU
CONVINCED ME THIS NUMBER IS AN
IMPORTANT THING TO THINK THROUGH
AND I WAS THINKING THROUGH HOW
DO WE JUSTIFY OPTION 2 BECAUSE I
THINK PROBABLY EVERYBODY ON THE
CALL WOULD LOVE TO SEE MORE
MONEY FOR AUTISM RESEARCH
OPPOSED TO LESS.
AND I DO THINK POTENTIALLY WITH
THIS FOCUS ON REALLY ENGAGING
UNDER SERVED GROUP AND GROUPS
UNDER REPRESENTED IN RESEARCH,
NA IS SOMETHING THAT BECOMES A
REAL FOCUS OF THIS PLAN AND
CROSS-CUTTING THEME MAY GIVE
JUSTIFICATION BECAUSE IT'S NOT
EASY WORK AND ALL OF US MYSELF
INCLUDED WOULD LOVE MY SAMPLES
TO BE MORE DIVERSE BUT I DON'T
ALWAYS FEEL LIKE I HAVE THE
TOOLS TO MAKE THAT HAPPEN AND
SOMETIMES GROUPS ARE HARD TO
ENGAGE TO DO THAT.
I THINK IF WE REALLY WANTED TO
SEE A SEE CHANGE IN TERMS OF
HAVING OUR SAMPLES BEING MORE
REPRESENTATIVE OF THE
POPULATIONS AT LARGE I THINK IT
WILL PROBABLY TAKE A SIGNIFICANT
INVESTMENT FOR THAT TO HAPPEN.
SO PERHAPS A FOCUS ON ENGAGING
THE POPULATION OF AUTISTIC
INDIVIDUALS AND THEIR FAMILIES
TO SAY IT'S REALLY IMPORTANT AND
WE'LL NEED ADDITIONAL FUNDING TO
MAKE THIS HAPPEN.
>> JULIE, I LIKE THE FORMATION
OF IDENTIFYING SPECIFIC AREAS WE
WANT TO EXPAND BY INCREASING
RESOURCES AVAILABLE INCLUDING
REACHING UNDER SERVED
POPULATIONS AND THE REFERENCE TO
OTHER POPULATIONS AND INCREASING
THE AMOUNT OF RESEARCH IN ADULTS
WITH AUTISM SO IDENTIFY THAT
WOULD BE A PRODUBLTH --
PRODUCTIVE AREA AND USING THAT
TO JUSTIFY A BUDGET AND
RECOMMENDATION FOR BUDGET
INCREASE.
SORRY TO INTERRUPT.
>> JUST AS A REMINDER TOO THAT
WHEN WE ARE MAKING THIS BUDGET
RECOMMENDATION THIS COMMITTEE IS
AUTHORIZED TO BE ABLE TO MAKE
RECOMMENDATIONS REGARDING AUTISM
BUT WANTED YOU TO KEEP IN MIND
THERE'S AN ENTIRE BODY OF WORK
BEING DONE ON ALL DISABILITIES
AND MANY AGENCIES THAT FOCUS ON
DISABILITIES AS A WHOLE AND
DON'T NECESSARILY SPECIFY VERY
MANY THINGS SPECIFICALLY FOR
AUTISM.
THERE IS OTHER FUNDING THAT IS
ALSO BEING SPENT ON THINGS THAT
WOULD BE USEFUL TO THE AUTISM
COMMUNITY BUT THE BUDGET
RECOMMENDATION THAT THE
COMMITTEE IS AUTHORIZED TO MAKE
WOULD HAVE TO DO WITH AUTISM
SPENDING SPECIFICALLY.
SO KEEP IN MIND THAT IT'S NOT
LIKE THIS IS THE ONLY RESEARCH
MONEY THAT BENEFITS AUTISM.
THERE'S ALSO RESEARCH MONEY
BEING SPENT MORE BROADLY THAT'S
BENEFICIAL.
SUSAN, DO YOU HAVE A QUESTION?
>> A COMMENT.
I WANTED TO SAY I APPRECIATE AND
WE BENEFIT FROM THE COMMENTS WE
HEARD.
AFTER THE POLL WAS LAUNCHED.
I WAS PERSONALLY VERY SURPRISED
TO SEE THE RESULTS OF THE POLL.
I WONDER IF WE COULD HAVE
COMMENTS AND DISCUSSION BEFORE
THE POLLS LAUNCH THAT WAY WE CAN
GO INTO THOSE ANSWERS WITH MORE
INFORMED OPINIONS.
PERSONALLY, I WAS ALSO VERY
SURPRISED BY THE OVERWHELMING
75% TO 25% ON ADDING COVID-19 AS
A SEPARATE SECTION OF THE REPORT
WHICH I PERSONALLY DISAGREE WITH
BUT WONDER IF WE CAN BENEFIT
FROM TALKING TO ONE ANOTHER
ABOUT THAT BEFORE WE HAVE THE
OPPORTUNITY TO VOTE.
>> SURE.
AND I'M GOING TO ASK TO RERUN
THE POLL BECAUSE WE HAVE HAD A
SIGNIFICANT DISCUSSION.
THIS IS THE FIRST TIME WE'RE
USING POLLING IN THE MEETINGS
HERE SO IT'S AN EXPERIMENT.
>> AND I THINK IT'S A GREAT IDEA
AND WE'RE LEARNING AS WE GO BUT
I'D LIKE TO REQUEST THAT.
>> NO, I WAS PLANNING TO DID
THAT AGAIN AND JALEN, I HAD
ANOTHER COMMENT.
IT'S DOWN.
THE POLL IS PUT UP AGAIN.
IF YOU CAN GO AHEAD AND RESPOND
TO THAT THEN WE WILL SEE WHERE
WE LIE.
>> THE POLL RESULTS ARE IN AND
HOW SHOULD IT BE UPDATED IN THE
UPCOMING STRATEGIC PLAN.
OPTION 1 WAS TO EXTEND THE TIME
LINE BY FIVE YEARS TO REACH $685
MILLION BY 2025 AND OPTION
NUMBER 2 WAS RECOMMENDING
DOUBLING THE RESEARCH AMOUNT
FROM 2020 WHICH IS AROUND $430
TO $860 MILLION AND OPTION 3 WAS
NEITHER ONE OR TWO OR SOMETHING
ELSE AND 65% SAYING THEY'D LIKE
TO EXTEND THE TIME LINE SO
OPTION 1 AND 40% OPTION 2.
SO THAT'S A CLEAR MAJORITY SO WE
WILL WORK WITH THAT IN THE DRAFT
OF THE PLAN AND BRING IT BACK TO
THE COMMITTEE TO LOOK AT IT ONCE
WE'VE DRAFTED IT BUT THERE'S A
PART 2 TO THIS SO WHAT WE TALKED
ABOUT A COUPLE MINUTES AGO ABOUT
THINKING ABOUT WHAT AREAS WE
MIGHT WANT TO THINK ABOUT IN
TERMS OF WHAT WE WOULD DO IF
THERE'S A BUDGET RECOMMENDATION
IS THERE ANYTHING THAT UNDER
LIES THIS AND LAST TIME THE
COMMITTEE IDENTIFIED THREE AREAS
THAT THEY FELT WERE PRIORITIES
FOR INTENSIFIED RESEARCH EFFORTS
AND THE THREE AREAS THEY
IDENTIFIED WERE TREATMENTS AND
INTERVENTIONS, EVIDENCE-BASED
SERVICES AND LIFE SPANISH USE.
-- LIFE SPAN ISSUES.
SO THE WAY I'VE SET UP THE POLL
IS JUST FOR YOU TO FIRST LOOK AT
THIS.
THERE'S ANOTHER SLIDE AFTER THIS
THAT HAS ANOTHER POLL BUT TO SEE
IF YOU STILL FEEL THESE THREE
AREAS ARE TOP AREAS YOU WOULD
WANT TO CONSIDER AND JUST KEEP
IN MIND OF COURSE WE DON'T WANT
TO HAVE 25 DIFFERENT AREAS TO
HIGHLIGHT.
WE WANT TO KEEP IT SMALL AND
FOCUSSED SO WHEN CONGRESS SEES
IT THEY SEE WE HAVE A DIRECTION
AND I KNOW IT IS CHALLENGING
BECAUSE IT'S A DIVERSE COMMITTEE
WITH A LOT OF DIFFERENT OPINIONS
AND THOUGHTS BUT SHOULD WE HAVE
A DISCUSSION BEFORE THE POLL?
>> I'M WONDERING IF WE NEED TO
DO THIS NOW.
WE HAVE A FEW MINUTES LEFT
BEFORE WE HAVE TO BREAK AND
THERE WAS A DESIRE TO HAVE
DISCUSSION INCLUDING SOME OTHER
AREAS NOMINATED.
CAN WE AFFORD TO WAIT UNTIL THE
NEXT MEETING TO DISCUSS THE
AREAS THAT WE RECOMMEND
INCREASING OR --
>> ARE YOU TALKING ABOUT THE
SUMMARY OF ADVANCES?
>> NO, NO, NO.
I'M TALKING ABOUT THE BUDGET
AREAS AND I'VE HEARD
COMMUNICATIONS AND IN ADDITION
TO THE LIFE SPAN THE OTHER
ISSUES AND REACHING DIVERSE
POPULATIONS AND WONDERING IF
THAT WOULD BENEFIT FROM A LONGER
DISCUSSION THAN WE CAN HAVE IN
THREE MINUTES SO CAN WE COME
BACK TO THAT IN THE APRIL
MEETING?
>> I THINK WE CAN.
WE CAN WORK WITH THE INITIAL
BUDGET RECOMMENDATIONS.
YOU'LL SEE MY NEXT SLIDE AND
POLL IS WHETHER SERVICES ON
DISPARITIES IN UNDER SERVED
COMMUNITIES SHOULD BE ADDED AS A
PRIORITY AREA BUT THERE MAY BE
OTHER ONES.
WE CAN WITH THE COMMITTEE GIVING
US FEEDBACK ON THE PLAN IF YOU
HAVE THOUGHTS ON PRIORITY AREAS
TO CONSIDER WE CAN SEND THEM IN
AND USE THEM IN A POLL AT THE
APRIL MEETING.
SO TOO WE'RE -- SO IF WE'RE
GOING TABLE THAT THERE'S A
COUPLE HANDS RAISED.
WE'RE SKIPPING THESE POLLS AND
MOVING ON BUT YETA, DID YOU HAVE
A COMMENT?
>> YES, GOOD AFTERNOON, EVERYONE
ON THE EAST COAST.
I'M THINKING WHEN YOU PRESENT
THE PRIORITY AREAS IT WOULD BE
GREAT IF WE CAN SEE A LIST SIDE
BY SIDE BECAUSE IT'S DIFFICULT
FOR ME, PERSONALLY, TO OKAY WHAT
ARE ALL THE AREAS THAT WE TALKED
ABOUT AND SEEING THE PROPOSED
LIST.
THAT WOULD MAKE IT EASIER TO
MAKE A DETERMINATION.
>> THAT'S A GREAT SUGGESTION.
WE CAN LIES DO THAT.
THERE'S A WAY TO DO THAT.
THANK YOU.
DINA.
>> SIMILARLY, IF WE CAN DEFINE
HOW WE PREVIOUSLY REFERENCE THE
CATEGORIES AND THE DE
DEFINITIONS AND SEVERAL US
ARRIVED LATE FOR THE MEETING
BECAUSE WE DIDN'T REGISTER THE
SHIFT IN THE TIME AND MISSED THE
OPPORTUNITY TO PARTICIPATE IN
THE SSA DISCUSSION AND FROM WHAT
I UNDERSTAND WE WERE NOT ABLE TO
ASK A LOT OF QUESTIONS.
PEOPLE WERE LEFT WITH A LOT OF
QUESTIONS.
I WANTED TO ASK IF WE COULD
INVITE THAT INDIVIDUAL TO COME
BACK SO WE HAVE OPPORTUNITIES TO
ASK THOSE QUESTIONS MAYBE IN THE
APRIL MEETING BECAUSE FRANKLY, I
PREPARED A LOT OF QUESTIONS
BECAUSE MY DISSERTATION IS ON
SSA.
I WOULD LIKE TO POSE QUESTIONS
AND I THINK OTHER PEOPLE HAVE
QUESTIONS OR COMMENTS WE DIDN'T
HAVE TIME FOR.
I WANTED TO MAKE A PITCH THERE.
THANK YOU.
>> WE HAVE A FULL AGENDA ALREADY
FOR APRIL.
WE HAVE A NUMBER OF THINGS.
I'M NOT SURE IF WE CAN REINVITE
THE SAME SPEAKER AGAIN.
>> I THINK WE'LL TAKE THAT
SUGGESTION TO HEART.
I WAS DISAPPOINTED AT THE
RELATIVE SMALL AMOUNT OF TIME
THE SPEAKER LEFT FOR US TO ASK
QUESTIONS AND MAKE COMMENTS BUT
I THINK WE WANT TO MAKE SURE THE
COMMENTS AND QUESTIONS WE MAKE
WILL BE PITCHED TOWARDS THE
NEEDS OF THE GENERAL AUDIENCE
THAT'S LISTENING IF WE'RE GOING
TO GO THROUGH THAT.
SO LET'S CONFER AND DINA IF YOU
WOULDN'T MIND E-MAILING WHAT
YOUR QUESTIONS WERE AND MAYBE WE
CAN TAILOR A SESSION AROUND
THOSE NEEDS AND IF OTHERS DIDN'T
GET AN OPPORTUNITY TO ASK
QUESTIONS YOU CAN SEND THEM TO
ME AND WE'LL REPORT BACK AND
WHEN WE CAN SCHEDULE IT.
>> THANK YOU.
I THINK WE NEED TO MOVE ON BUT I
SEE ALLISON, YOU'VE BEEN WANTING
TO MAKE A COMMENT, GO AHEAD AND
THEN WE SHOULD BREAK FOR LUNCH.
>> I DON'T WANT TO INTERRUPT THE
LUNCH SCHEDULE BUT ONE OPTION
WHICH JEFF AND I HAVE BEEN
DISCUSSING BECAUSE WE WANTED TO
CATCH THOSE QUESTIONS HE WASN'T
ABLE TO RESPOND AND I KNOW THREE
PEOPLE RAISED HANDS AND ALREADY
SENT SUSAN A NOTE TO GET
INFORMATION AND QUESTIONS IN
WRITING SO I WOULD IMAGINE THAT
TO SUSAN SO MAYBE IF YOU COULD
SEND THOSE QUESTIONS UP TO SUSAN
AND HER TEAM, MAYBE WE CAN DRAFT
SOMETHING TO SEND THAT OUT SO
PEOPLE CAN GET THEIR RESPONSE
SOONER THAN LATER.
>> THAT'S NOT A BAD IDEA.
WE HAVE TO FIGURE OUT A WAY TO
MAKE SURE IT REACHES THE
AUDIENCE.
THIS COMMITTEE NOT ABOUT
ANSWERING THE INDIVIDUAL
MEMBER'S OF THE COMMITTEE'S
QUESTIONS AND CONCERNS BUT
PROVIDING AN OPPORTUNITY TO ASK
QUESTIONS OF BROAD INTEREST TO
THE AUTISM COMMUNITY AT LARGE
AND ALLOW THOSE INDIVIDUAL TO
HEAR THOSE ANSWER.
PERHAPS WE CAN BROKER A DOCUMENT
MAYBE A Q&A DOCUMENT TO PUT ON
THE WEBSITE ETCETERA.
SUSAN, I'LL LEAVE THAT TO YOU
AND ALISON TO FIGURE OUT HOW TO
DO AND THEN WE'LL SOLICIT
QUESTIONS AND COMMENTS FROM THE
COMMITTEE AND FIGURE OUT WHETHER
WE CAN'T GET A DOCUMENT ON THE
WEBSITE FOR THE PUBLIC AND/OR
REPEAT THE SESSION AT A FUTURE
MEETING.
I WANT TO THANK EVERYONE FOR
THEIR TREMENDOUS ACTIVITY.
I KNOW SUSAN APPRECIATES ALL THE
COMMENTS WE HEARD.
WE MADE SOME PROGRESS ON THE
STRATEGIC PLAN PROCESS INCLUDING
THE BUDGET AND WE'LL MAKE MORE
PROGRESS AFTER THE NEXT MEETING.
I'M PLEASED AT THE ACTIVE NATURE
OF THIS GROUP TODAY AND I ALSO
AM PLEASED PEOPLE HAVE BEEN
FEELING COMFORTABLE VOICING
THEIR OPINIONS EVEN WHEN THEY'RE
NOT PREVIOUSLY AGREEING WITH THE
PREVIOUS SPEAKER AND A WANT TO
ENCOURAGE THAT.
EVERYONE IS BEING INCREDIBLY
RESPECTFUL AND I APPRECIATE
THAT.
WE DO NEED TO TAKE A BREAK FOR
OUR OWN MENTAL AND PHYSICAL
HEALTH.
WE CAN'T BE ON ZOOM FROM 10:00
A.M. TO 5:00 P.M. SO WE'LL BE
BACK AT 1:00.
>> BACK AT 1:00 WHEN WE'LL
COMMENCE WITH THE PUBLIC
COMMENT.
PLEASE COME BACK ON TIME.
WE WANT TO HEAR FROM ALL THE
COMMENTERS AND HEAR ABOUT THE
WRITTEN COMMENT.
SEE YOU ALL AT 1:00.
>> WELCOME BACK, EVERYONE.
IT'S 1:00.
I'M GOING TURN IT BACK TO SUSAN
WHO IS GOING TO BE OTHER
STRAIG --
ORCHESTRATING THE PUBLIC COMMENT
SESSION.
>> THANK YOU, JOSH.
I'D LIKE TO TAKE A FEW MOMENTS
BEFORE WE START THE PUBLIC
COMMENT SESSION THIS AFTERNOON
TO GIVE AN OPPORTUNITY TO
DRDR.
DR. ANITA EVERETT TO INTRODUCE
HERSELF FROM THE SUBSTANCE ABUSE
AGENCY.
COME TO THE SCREEN ANITA AND
INTRODUCE YOURSELF.
>> CAN YOU HEAR IS THE
>> WORK AT THE SAMHSA AT THE
FAMILY OF AGENCIES.
PRIOR TO MY PERSONAL TIME AT IN
THE FEDERAL GOVERNMENT I WORKED
IN BALTIMORE AT JOHNS HOPKINS
WHERE I WAS A DIVISION DIRECTOR
OF COMMUNITY PROGRAM AND HAD A
DEDICATED CLINIC FOR ADULTS WHO
AGED OUT OF SERVICES.
I'M FAMILIAR WITH THE POPULATION
THROUGH A CLINICAL LENS AND
INTERESTED IN SUPPORTING WHAT WE
CAN TO ASSURE SERVICES OF GOOD
CAUGHT -- GOOD QUALITY AND THE
RESEARCH SO WE GET BETTER
ANSWERS TO THE QUESTIONS OUT
THERE WITH REGARDS TO WORKING
WITH THE POPULATION THAT HAS
AUTISM.
I'M ALSO WANTED TO CALL
ATTENTION TO A REPRESENTATIVE
FROM SAMHSA THAT WORKS WITH ME
SO WHEN I'M NOT ABLE TO ATTEND
THEY ARE THERE.
I'M INTERESTED IN PARTICIPATING
OVER THE NEXT YEAR.
>> GLAD TO HAVE YOU WITH US.
NOW WE'LL GO ON TO THE PUBLIC
COMMENT SESSION.
WE'LL HEAR FROM FIVE ORAL PUBLIC
COMMENTERS AND WILL TALK ABOUT
THE WRITTEN COMMENTS AND THEN
HAVE TIME FOR DISCUSSION.
SO WITH OUR ORAL COMMENTERS,
I'LL CALL ON YOUR NAME AND IF
YOU CAN TURN ON YOUR CAMERA AND
WE HAVE THE FULL TEXT OF THE
COMMENTS ON THE WEBSITE IF YOU
GO TO THE MEETING MATERIALS
YOU'LL SEE THE PUBLIC COMMENTS
PACKET AND CAN USE THE INDEX IN
THE FRONT OR TABLE OF CONTENTS
TO FIND THE SPECIFIC COMMENTS
THERE EACH PERSON.
FIRST I'D LIKE TO CALL ON
RUSSELL LEHMAN TO GIVE US A
COMMENT.
WELCOME, RUSSELL.
>> GOOD MORNING, GOOD AFTERNOON.
THANK YOU FOR HAVING ME.
MY NAME IS RUSSEL LEHMAN I'M A
MOTIVATIONAL SPEAKER WITH THE
PLATFORM OF AUTISM AND MENTAL
HEALTH.
I HAPPEN TO HAVE AUTISM MYSELF.
I'D LIKE TO OFFER MY BRIEF
COMMENTS ON THE SHOCK TREATMENT
AT THE CENTER.
AS SOMEBODY WHO'S BEEN IN
PATIENT IN PSYCHIATRIC WARDS
THREE TIMES IN MY LIFE AND
ALWAYS LEFT WORSE OFF THAN WHEN
I ENTERED DUE TO TRAUMATIC
EXPERIENCES, THIS HITS CLOSE TO
HOME FOR ME.
THE SCHOOL ADVERTISES THE
BEHAVIOR MODIFICATION PROGRAM AS
SAFE AND EFFECTIVE AND BACKED BY
SCIENCE BUT THE SCIENCE IS THAT
THE GRADUATED ELECTRONIC
ACCELERATOR THE SHOCK DEVICES
THEY USE PRODUCE WHEN THEY GIVE
A SHOCK PRODUCE 90 MILLIGRAMS OF
ELECTRICITY.
THAT LASTS TWO SECONDS.
THAT'S THE STRONGEST DEVICE THEY
HAVE.
NOW A CATTLE PROD PRODUCES 10
FOR A FRACTION OF A SECOND.
THE ONES ON HUMANS, 90
MILLIAMPS, TWO SECONDS.
MY FIRST EXPERIENCE IN THE PSYCH
WARD WAS AGE 12.
STAYED THERE FOR FIVE YEARS.
THEY USED TO TACKLE KIDS FROM
BEHIND THAT WERE WANDERING DOWN
THE HALLWAY.
I REMEMBER ONE TIME MY MOM CAME
TO VISIT AND A STARTED TO CRY
BECAUSE I WAS SO HAPPY TO SEE
THEM AND I PULLED US APART AND
TOLD HER TO LEAVE BECAUSE THEY
FELT SHE WAS ENABLING ME AND I
START RUNNING DOWN THE HALLWAY
AND I START THINKING THEY'RE
GOING TO TACKLE ME.
JUST THAT IS TO TRAUMATIC AND
THAT HURTS TO THIS DAY.
WHEN WE CAUSE TRAUMA ON THESE
YOUNG KIDS, YOUNG ADULTS, IT
LAST AS A LIFE TIME.
IT HAS A RIPPLE EFFECT.
THANKFULLY I DIDN'T GET CLOSE TO
THE GED DEVICES AND SOME OF THE
TRAUMATIC EXPERIENCES THAT OCCUR
IN THE HOSPITALS MAY HAVE HELP
MY OCD AND OBSESSION AND AUTISM
BUT AT WHAT COST IN THE LONG RUN
BECAUSE I NOW I ASSOCIATE THAT
WITH TRAUMATIC EXPERIENCES AND
IT TAKES A LOT OF WORK TO HEAL.
MY QUESTION IS WHAT ARE WE GOING
TO DO ABOUT THIS?
I KNOW MY TIME'S COMING TO A
CLOSE.
I WANT TO END IT WITH I'VE BEEN
LOOKING AT THE DRAWINGS SOME OF
THE KIDS FROM THE ROTTENBERG
CENTER.
THERE'S DRAWINGS THESE KIDS DRAW
AND THEY'RE HEARTBREAKING.
IT LOOKS LIKE SOMETHING OUT OF
THE SPANISH INQUISITION.
WHAT ARE WE DOING?
ARE WE JUST TALKING THE TALK OR
GOING TO TAKE ACTION BEHIND
THIS.
I KNOW IT'S UP TO THE FDA AT
THIS POINT BUT LET'S ACTUALLY
ACT ON OUR SINCERITY OF HELPING
INDIVIDUALS WITH AUTISM AND
DEVELOPMENT DISABILITIES.
THANK YOU.
>> THANK YOU, RUSSELL FOR
SHARING THOSE COMMENTS.
WE'LL HAVE A DISCUSSION PERIOD
FOR THE COMMITTEE AT THE END OF
THE DMENT PERIOD SO WE
APPRECIATE YOUR COMMENTS,
RUSSELL AND WE'LL GIVE PEOPLE A
CHANCE TO RESPOND AT THE END OF
THE SESSION.
NEXT I'D LIKE TO INVITE NICOLE
CORRADO TO SHARE SOME COMMENTS.
DO WE HAVE NICOLE CORRADO ON
ZOOM?
>> IT DOESN'T LOOK LIKE SHE'S
ON.
>> OKAY.
WE'LL MOVE FORWARD BUT IF SHE
APPEARS ON ZOOM DURING THIS
SESSION WE CAN COME BACK.
NEXT, I'D LIKE TO MOVE TO KAREN
HEFFLER.
>> HI, I'M DR. KAREN HEFFLER.
I'M AN AUTISM RESEARCHER AT
DREXEL UNIVERSITY AND MOTHER OF
AN AUTISTIC ADULT SON AND ASK
YOU TO LISTEN TO THE RESEARCH
I'LL BRIEFLY REVIEW AND DISCUSS
IT AND ACT ON IT URGENT I IN A
STRATEGIC PLAN.
WHILE AUTISM PREVALENCE RATES
CONTINUE TO RISE THERE'S AMPLE
FINDINGS OF AN ASSOCIATION
BETWEEN ORAL SCREEN EXPOSURE AND
OUTCOMES AND THERE'S GROWING
REPORTS OF INTERVENTION
INCLUDING TURNING OFF SCREENS
AND FOCUSSING ON SOCIAL
ENGAGEMENT STRATEGIES IN
CHILDREN 4 YEARS OLD AND YOUNGER
WITH A HISTORY OF HIGH EXPOSURE
TO SCREENS RESULTING IN MORE
RAPID AND EXTENSIVE IMPROVEMENT
IN AUTISM SYMPTOM AND OUR WORK
SHOWS A DECREASE IN PARENTS'
STRESS AND THE FINDINGS ARE
CONSISTENT WITH CHILD
DEVELOPMENT LITERATURE.
INFANTS AND TODDLERS LEARN
THROUGH PARENT-CHILD ANTIACTIONS
AND CHILD FOCUSSED SCREEN
INTERFERE WITH THESE CRITICAL
PARENT-CHILD INTERACTION.
A LANDMARK 2021 AUSTRALIAN STUDY
SHOWED PARENT-INFANT SOCIAL
COMMUNICATION TRAINING DECREASED
AUTISM OUTCOME IN INFANTS
SHOWING EARLY SIGNS OF AUTISM
AND HIGHER SCREEN TIME IS
ASSOCIATED WITH LANGUAGE DELAY,
SOCIAL IMPAIRMENT, CHALLENGING
BEHAVIORS AND DYSREGULATION.
ALL OF WHICH ARE CO-OCCURRING IN
AUTISM.
IN THE U.S., TODDLERS AVERAGE
2.5 HOURS PER DAY OF SCREEN TIME
AND 50% HAVE THEIR OWN MOBILE
DEVICES.
IN ROMANIA, 97% OF CHILDREN
PRESENTING WITH A DIAGNOSIS HAD
SCREEN EXPOSURE OF FOUR HOURS
PER DAY PER INFANCY.
PROVIDE AN URGENT RECOMMENDATION
IN THE STRATEGIC MILLION TO
PROVIDE A FOCUS ON RESEARCH TO
STUDY FIRST PARENT EDUCATION ON
DIGITAL SCREEN TIME AND SOCIAL
ENGAGEMENT STRATEGY WITH AUTISM
AND CHILD DEVELOPMENT AS OUTCOME
MEASURES AND SECONDLY, PARENT
EDUCATION AND SUPPORT TO
DECREASE SCREEN TIME AND FOCUS
ON SOCIAL STRATEGIES IN YOUNG
CHILDREN WITH AUTISM HIGH SCREEN
EXPOSURE WITH AUTISM SYMPTOMS
AND CHILD DEVELOPMENT AS OUTCOME
MEASURES.
AS A PARENT OF AN ADULT SON WITH
AUTISM, I UNDERSTAND THE NEED
FOR SERVICES FOR ALL IMPACTED BY
AUTISM.
WITH RISING AUTISM PREVALENCE,
THE NEED FOR LIFE LONG SERVICES
IS ASTRONOMICALLY INCREASING.
ADDRESSING THIS ENVIRONMENTAL
RISK FACTOR FROM BOTH THE
PREVENTION AND INTERVENTION
PATHWAYS HAS THE POTENTIAL TO
SIGNIFICANTLY IMPROVE OUTCOMES
IN THE YOUNGEST CHILDREN WITH
THIS EXPOSURE.
THERE BE LEAVING GREATER
RESOURCES FOR OTHER CHILDREN AND
ADULTS WITH AUTISM.
EXTENSIVE RESEARCH REFERENCES
ARE IN MY WRITTEN COMMENT.
THANK YOU FOR YOUR ATTENTION.
>> THANK YOU, KAREN HEFFLER FOR
THOSE COMMENTS.
WE APPRECIATE YOU BEING HERE AND
SHARING WITH US.
WE WILL NEXT HEAR FROM ALISON
SINGER.
WELCOME.
>> HI, I'M ALISON SINGER THE
PRESIDENT OF THE AUTISM SCIENCE
FOUNDATION AND THE MOTHER OF A
DAUGHTER WITH PROFOUND AUTISM
AND SERVE AS A PUBLIC MEMBER OF
THE IACC FOR 12 YEARS.
IN DECEMBER 2021 THE LANCET
PUBLISHED A SPECIAL REPORT
ENTITLE THE LANCET COMMISSION ON
THE FUTURE OF CARE AND RESEARCH
IN AUTISM.
YOU'LL HEAR MORE LATER TODAY.
IN THE REPORT THEY INTRODUCED
THY TERM PROFOUND AUTISM DEFINED
AS PEOPLE WITH INTELLECTUAL
DISABILITY AND MINIMALLY VERBAL
AND LIKELY TO NEED 24 HOURS
SUPPORT THROUGHOUT THEIR LIVES.
THE GOAL OF INTRODUCING THIS
DESIGNATION IS TO PROVIDE MORE
SPECIFICITY TO THE AUTISM
SPECTRUM AND EQUIP THE COMMUNITY
WITH THE LANGUAGE NECESSARY TO
ENSURE ALL INDIVIDUALS WITH
AUTISM RECEIVE THE
ACCOMMODATIONS AND INTERVENTIONS
THAT THEY NEED.
CONCISE AND MEANINGFUL TERMS
LIKE PROFUND AUTISM WILL
SIMPLIFY THE PROCESS LEADING TO
QUICKER AND MORE FORCEFUL
INTERVENTION.
FOR THOSE WHO BRISTLE AT THE USE
OF LABELS TO DESCRIBE AUTISM
IT'S VITAL TO UNDERSTAND THE
PROFOUND AUTISM DOES NOT SEEK TO
DEMEAN INDIVIDUALS IN THIS GROUP
OR INVALIDATE THOSE NOT IN IT
AND MEANT TO CALL ATTENTION TO
THE UNIQUE NEEDS OF THIS
VULNERABLE AND UNDER SERVED
COMMUNITY.
BASED ON REVIEW OF SEVERAL
INTERNATIONAL DATABASES, THE
LANCET ESTIMATES UP TO 48% OF
THE AUTISM POPULATION FALLS INTO
THIS CATEGORY OF PROFOUND
AUTISM.
IN OTHER WORDS, FOR NEARLY EVERY
AUTISTIC PERSON TRYING TO GET A
JOB AT MICROSOFT THERE'S ONE
NON-VERBAL AND STRUGGLING TO GET
THROUGH THE DAY WITHOUT PEALING
THE SKIN OFF HER ARM.
THE DATA INDICATE FOR EVERY HIGH
FUNCTIONING ADULT FOR AUTISM AT
THE IACC TABLE THERE SHOULD BE A
PARENT REPRESENTING THE NEED OF
A CHILD OR ADULT WITH PROFOUND
AUTISM.
SINCE THE PUBLICATION OF THE
LANCET REPORT, I HAVE HEARD FROM
COUNTLESS PARENTS OF PROFOUNDLY
AUTISTIC CHILDREN WHO ARE SCARED
ABOUT THEIR CHILDREN'S FUTURES
AND FEEL BULLIED INTO SILENCE BY
HIGHER FUNCTIONING
SELF-ADVOCATES WHO OFTEN HAVE A
FUNDAMENTAL MISUNDERSTANDING OF
WHAT HAVING PROFOUND AUTISM EVEN
MEANS.
THESE PARENTS TELL ME THEY ARE
EXHAUSTED BOTH PHYSICALLY AND
EMOTIONALLY BY THE WORK IT TAKES
TO KEEP THEIR CHILDREN HEALTHY
AND SAFE EACH DAY AND BY THE
DIFFICULTIES IN SECURING QUALITY
CARE.
IN CLOSING, I URGE THIS
COMMITTEE TO ADD ADDITIONAL
PUBLIC MEMBERS WHO ARE PARENTS
OF INDIVIDUALS WITH PROFOUND
AUTISM AND I URGE THIS COMMITTEE
TO FOCUS ON THE TRADITIONALLY
EXCLUDED POPULATION IN THE
ANNUAL STRATEGIC PLAN FOR AUTISM
RESEARCH.
THE CURRENT LIST OF IACC
STRATEGIC PLAN THEMES PUBLISHED
ON THE IACC WEBSITE GROSSLY
UNDER WEIGHTS NEURODIVERSITY
TEAM AND REDUCES THE PEOPLE WITH
PROFOUND AUTISM TO A FOOT NOTE
AND REVEALS A DISCONNECT TO THE
SUFFERING A TREMENDOUS FORCE OF
THE AUTISM POPULATION LIVES WITH
EVERY DAY.
THANK YOU FOR YOUR CONSIDERATION
AND THANK YOU FOR THE WORK YOU
DO TO SUPPORT THE NEEDS OF ALL
THE NUMBERS OF THE AUTISM
COMMUNITY.
>> THANK YOU, ALISON.
NEXT WE HAVE MICHAEL HA.
ARE YOU IN THE ZOOM ROOM?
>> YES.
>> THANK YOU.
>> MY NAME IS MICHAEL AND I HAVE
A 4-YEAR-OLD SON NAMED RYKER
BORN IN THE MODERN WORLD OF
SOCIAL TECHNOLOGY AND THE BOND
WAS SEPARATED BY NOTHING MORE
THAN A WI-FI AND SO MANY PARENTS
DEPEND ON DEVICES WHILE WE DO
COOKING, CLEANING, CREATING AN
INCOME AND THIS IS A MESSAGE OF
HOPE AND BRING AWARENESS TO THE
DETRIMENTAL AFFECT OF SCREEN
TIME AND TAKES AWAY THE BOND.
TO ILLUSTRATE MY OWN EXPERIENCES
HE WAS DIAGNOSED AROUND 18
MONTHS OLD.
WE HAD HIM START ON EARLY
INTERVENTION WITH OTSI AND
SPEECH THEN ON HIS THIRD
BIRTHDAY ADDED MORE HOURS
INCLUDING ADA INTO HIS DAYCARE
ROUTINE ALL WHICH SEEMED TO HELP
HIS GROSS MORTAR SKILLS AND
RECEPTIVE AND -- MOTOR SKILLS
AND DESPITE INTENSIVE THERAPY
NONE OF THE SERVICES
SIGNIFICANTLY INCREASED HIS
SOCIAL RESPONSES TO OTHERS.
HE HAD POOR EYE CONTACT AND NO
SPOKEN LANGUAGE AND PLAY BY
HIMSELF AND DID NOT ENGAGE WITH
OTHERS HOWEVER, TWO MONTHS AGO
WE WERE INDUCED TO A DREXEL
RESEARCHER WHO SUGGEST WED TRY
SOME TECHNIQUES THAT SEEMED TO
HAVE BENEFIT IN A RECENT STUDY
AND TECH DEVICES DISRUPT
INTERACTION BETWEEN PARENTS AND
CHILDREN AND HAD STRATEGIES
INVOLVING INTENSE SOCIAL
CONNECTS AND STRATEGY FOR EYE
CONTACT AND GETTING OUR CHILD'S
ATTENTION.
ONE OF THE STRONGEST SUGGESTIONS
WAS REMOVE ALL TECH AND SCREEN
TIME COLD TURKEY SO ALL THE
AVAILABLE MOMENTS WERE SPENT
WITH SOCIAL INTERACTION.
WITHIN ONE WEEK WE NOTICED A
CHANGE IN HIS FAMILY AND
ENVIRONMENT.
WITHIN THREE WEEKS HIS RECEPTIVE
SKILLS TOOK A QUANTUM LEAP AND
TWO MONTHS IN THE PROGRAM HE'S
SHOWN SIGNS OF SOCIAL ENGAGEMENT
AND PARALLEL PLAYING WITH PEER
AND SOME DIRECT PLAY AT DAYCARE
AND REDUCING SOME FRACTIONATION
OF WORDS AND SAYING SOME WORDS
WITH MEANINGFUL INTENT AND
GIGGLES AND LOVES THE ATTENTION
TO HIS PARENTS AND POINTS TO
OBJECTS HE WANTS AND HAS SHOWN
REMARKABLE IMPROVEMENTS SINCE
FOLLOWING THE RECOMMENDATIONS.
THIS IS NON-INVASIVE, NON-DRUG
INDUCED AND TEACHABLE THERAPY
THAT HAS TREMENDOUS POTENTIAL TO
HELP OTHERS LIKE IT DID FOR MY
OWN SON.
WHAT I'M ASKING FOR ISN'T -- I'M
NOT ASKING FOR HELP FOR MY SON,
HE IS NOW MAKING RAPID
IMPROVEMENT.
I'M ASKING YOU IMPROVE THE FUND
AND FOCUS ON THIS TIME OF
INTERVENTION SO OTHER CHILDREN
AND FAMILIES CAN BENEFIT FROM
REPLACING TECH TIME WITH SOCIAL
ENGAGEMENT STRATEGIES BASED ON
WHAT WE EXPERIENCED.
SO THIS IS VERY IMPORTANT TO US.
THANK YOU.
>> THANK YOU, MICHAEL.
AND DID NICOLE CORRADO JOIN US?
CAN THE TEAM LET ME KNOW IF SHE
IS AVAILABLE?
I AM NOT SEEING NICOLE SO HER
COMMENTS ARE INCLUDED IN THE
PACKET.
YOU CAN READ THEM.
THEN IF I CAN GET HELP WITH
GOING TO THE SLIDES.
WE'LL SHARE SOMETHING ABOUT THE
WRITTEN COMMENTS.
GREAT, YOU CAN SEE NOW THE
SUMMARY OF WRITTEN COMMENTS WE
SHARED HERE.
WE'VE LISTED FOR YOU THE WRITTEN
COMMENTS WE RECEIVED FROM THE
COMMUNITY AND TRIED TO PUT THEM
INTO CATEGORIES SO YOU COULD
UNDERSTAND THE TYPES OF TOPICS
THAT PEOPLE WANTED TO WRITE TO
THE COMMITTEE ABOUT.
THEY INCLUDE ADDRESSING THE
NEEDS OF AUTISTIC INDIVIDUALS
WITH HIGH SUPPORT NEEDS AND/OR
PROFOUND AUTISM.
AND THERE'S A NUMBER OF PEOPLE
ON THAT LIST.
THERE WERE CONCERNS ABOUT
MEDICAL PRACTICES AND POTENTIAL
CAUSES OF AUTISM FROM A FEW
MEMBERS OF THE PUBLIC.
THERE WAS A COMMENT ON THE ROLE
OF THE IACC AND THE FEDERAL
GOVERNMENT.
WE HAD COMMENTS ON RESEARCH AND
POLICY IMPLICATIONS THERE A FEW
PEOPLE.
COMMENTS THAT WERE DIRECTED
TOWARDS THE STRATEGIC PLAN.
SERVICES AND SUPPORTS FOR ADULTS
WITH AUTISM OR ON THE AUTISM
SPECTRUM AND SAFETY AND
INTERACTIONS WITH LAW
ENFORCEMENT.
I BELIEVE THOSE WERE THE TOPICS
THAT WE HEARD ABOUT THROUGH THE
WRITTEN COMMENTS AND THE FULL
TEXT IS AVAILABLE ON OUR WEBSITE
AND SO AT THIS TIME WE'D LIKE TO
OPEN THE FLOOR FOR DISCUSSION
FROM MEMBERS OF THE COMMITTEE TO
TALK ABOUT THE COMMENTS THAT
YOU'VE LISTENED TO AND THE ORAL
COMMENTS AS WELL AS WHAT YOU
READ IN THE PUBLIC COMMENTS.
SO DINA, YOU HAVE YOUR HAND UP.
>> YES, I CAN'T START MY VIDEO.
I KNOW SOME OF US NEED BOTH.
THANK YOU.
I WANT TO THANK EVERYBODY FOR
THEIR COMMENTARY.
THE PUBLIC ALWAYS DOES A
PHENOMENAL JOB OF KEEPING US IN
THE LOOP.
I SEE THE PUBLIC COMMENTS IN
ADVANCE OF THE MEETING AND WHILE
I AGREE THE LEVEL SYSTEMS IN THE
DSM ARE NOT ADEQUATE LARGELY
BECAUSE THEY'RE VERY SUBJECTIVE
AND I HAVE OBSERVATIONAL,
PERSONALLY I'D LIKE TO SEE US GO
BACK TO THE GLOBAL ASSESSMENT OF
FUNCTIONING THAT LOOKED AT
ADAPTIVE AND BEHAVIORAL
SUPPORTS.
I DO BELIEVE THAT THERE'S SOME
INFORMATION THAT NEEDS TO BE
CLARIFIED.
WHILE NEARLY 60% OF CHILDREN
WITH AUTISM HAVE INTELLECTUAL OR
BORDERLINE INTELLECTUAL
ABILITIES MANY OF THAT 60% GO ON
TO ENJOY AT LEAST PART-TIME
EMPLOYMENT, POSITIVE SCHOOL
ENVIRONMENT WHEN HIGH QUALITY
SUPPORTS ARE PROVIDED.
NOT EVERYONE IN THE BORDERLINE
RANGE IS PROFOUNDLY AFFECTED AS
THE WORD WAS USED TODAY.
I WANT TO SAY TOO THAT I.Q. AND
LANGUAGE ARE NOT PROTECTIVE
FACTORS PREVENTING OR INHIBITING
SELF-HARM AND I.Q. DIDN'T
MITIGATE FUNCTIONAL LIMITATION
FOR MANY AUTISTICS AND WHY MANY
AUTISTIC INDIVIDUALS ARE
IDENTIFIED AS AUTISTIC AND FOR
SOCIAL SERVICES.
THE CONTINUUM THROUGHOUT THE
CONTINUUM, AUTISTIC INDIVIDUALS
ENGAGE IN NSSIB, SELF-HARM, AND
SO THEY'RE NOT ABLE TO BE USED
IN THAT WAY BECAUSE IT'S NOT
JUST LIMITED TO THAT COMMUNITY.
RESEARCH HAS ADDRESSED
NON-SUICIDAL SELF-INJURIOUS
BEHAVIOR AND OTHERS HAVE TALKED
ABOUT BARRIERS TO HEALTH CARE
AND MENTAL HEALTH, AND THERE'S
BEEN LGBTQ ISSUES AND EATING
DISORDERS HAVE PLAGUED OUR
COMMUNITY.
WE HAVE TO LOOK AT AUTISM AS A
CONTINUUM OF ISSUES.
I JUST WANT TO THANK ALL THE
AUTISTIC ADULTS ESPECIALLY THE
NUMBER OF AUTISTIC WOMEN WHO
OFFER THEMSELVES FOR RESEARCH TO
HELP THE ENTIRETY OF THE
COMMUNITY.
LASTLY IN TERMS OF HAVING A
PARENT WITH A CHILD WITH NEEDS
OF AUTISM AND WE CONTINUE TO
DEMEAN MANY MEMBERS ARE PEOPLE
WITH HIGH SUPPORT NEEDS AND MANY
MEMBERS OF THE IACC ARE ALSO
INDIVIDUAL WHO'S PARENTED
INDIVIDUALS WITH HIGH SUPPORT
NEEDS AND TO SUGGEST THAT
SOMEHOW THIS COMMUNITY IS NOT
REPRESENTED WHEN WE ARE ALL
CHARGED TO REPRESENT THE
ENTIRETY OF THE COMMUNITY IT'S
VERY DISSTRESSING AND KEEPING US
FROM THE IMPORTANT WORK WE DO
WHICH IS TO UNIFIED OUR
COMMUNITY SUCH THAT WE ARE ABLE
TO PUSH FOR THE POLICY CHANGES
THAT ARE SO CRITICALLY NEEDED
FOR THE ENTIRETY OF THE
COMMUNITY.
I HOPE WE CAN CONTINUE TO WORK
TOWARD ELIMINATING FRACTURE.
I WAS BLESSED TO PARTICIPATE IN
POLICY ADVOCACY WITH A PAL WHO
HAS A SON WHO IS NON-SPEAKING,
HIGH SUPPORT NEEDS, 24/7 SUPPORT
NEEDS AND WERE ABLE TO PARTNER
TO BRING POLICY CHANGES IN D.C.
THAT REPRESENTED THE NEEDS OF
BOTH OF OUR LOVED ONES.
SO I THINK WE NEED TO FIND A WAY
TO UNIFY AND MOVE FORWARD TO GET
BETTER SERVICES AND SUPPORTS FOR
THE ENTIRETY OF THE COMMUNITY.
THANKS FOR LISTENING.
IS
>> THANK YOU.
CAN WE HAVE A COMMENT FROM OUR
TEAM.
>> I'M FROM THE FDA BECAUSE I
DID REVIEW THE PUBLIC COMMENT
AND WANTED TO ADDRESS THE
CONCERNS ABOUT THE USE OF
STIMULATION DEVICES.
I KNOW THE ISSUE IS WORKING ITS
WAY THROUGH THE COURTS AND I
DON'T HAVE ANY SPECIFIC UPDATES
TODAY BUT I AM TAKING NOTE AND
WILL BE BRINGING BACK ANY
COMME
COMMENTS.
THANK YOU FOR HAVING ME.
>> THANK YOU, MARTINE.
NEXT, SCOTT ROBERTSON.
>> I'M SCOTT ROBERTSON.
I'VE BEEN ON THE MEETS BEFORE
BUT ON THE ALTERNATE FOR DO L
AND REPRESENTING US RIGHT NOW
DURING THIS AFTERNOON PERIOD.
I WANTED TO FIRST COMMENT ON THE
ORAL COMMENTS AS FAR AS THE
JUDGE ROTTENBERG CENTER AND
GIVES CONCERNS IN TERMS OF THE
HIGH LEVEL OF NUANCE MENTIONED
AND THAT MAKES ME THINK IN TERMS
OF THE NEED AS FAR AS HUMAN
RIGHTS FOCUSES.
I DON'T KNOW WHETHER THAT'S
SOMETHING THAT CAN GO MORE IN
THE STRATEGIC PLAN OR IN OTHER
DOCUMENTS BUT I THINK IT'S
SOMETHING DIFFERENT FOR US WITH
THE CARES ACT.
YOU HAVE CARES ACT VERSE US
OTHER LAWS LIKE OTHERS THAT TALK
MORE ABOUT HUMAN RIGHTS AND
SELF-DETERMINATION AND
INDEPENDENCE AND COMMUNITY
LIVING AND INCLUSION.
I DON'T KNOW IF WE CAN
STRENGTHEN THAT THROUGH THE
STRATEGIC PLAN OR OTHER S IN THE
FUTURE BUT IT HELPS SPOTLIGHT
SOMETHING BROADER THAN OBVIOUSLY
IT'S HORRIBLE IN TERMS OF
EELECTRIC SHOCK BUT I THINK
THERE'S A BROADER FOCUS IN TERMS
OF HUMAN RIGHTS.
I ALSO WANT TO CONCUR IN TERMS
OF WHAT HAS ALREADY BEEN SAID AS
FAR AS SUPPORTS AND SERVICES
SHOULD BE TAILORED TO THE
INDIVIDUAL SO THAT FOLKS CAN
HAVE THE SUPPORTS AND SERVICES
THEY THAT NEED IN ORDER TO BE
SUCCESSFUL AND BE ABLE TO HAVE
THE HIGH QUALITY OF LIFE THAT IS
EMPHASIZED A LOT IN THE AUTISM
CARES ACT AND THEN I HOPE WE
CONDITION TO HAVE OTHER
DISCUSSIONS ON THAT -- WE CAN
CONTINUE TO HAVE DISCUSSIONS ON
THAT AND I CONCUR SOMETIMES WE
MAKE GENERALIZATIONS ABOUT
FUNCTIONING ON A GLOBAL SCALE
AND I THINK A MORE MODERN
UNDERSTANDING FROM THE RESEARCH
LITERATURE AND FROM PROMISING
AND BEST PRACTICES IS TO TAILOR
IT AND TO INDIVIDUALIZED IT TO
MEET THE NEEDS OF NOT ONLY FOR
AUTISTIC PEOPLE AND MOST FOLKS
KNOW I'M AUTISTIC MYSELF IS FOR
FOLKS OVERALL WITH SIGNIFICANT
DISABILITIES AND OTHER FOLKS IN
LIFE IS HAVING THE
INDIVIDUALIZED CUSTOMIZED NATURE
FOR SUPPORTS AND SERVICES IS
CRUCIAL.
AND OBVIOUSLY I ALSO CONCUR WITH
THE FOCUS AS FAR AS EMPLOYMENT,
ETCETERA, THAT FOLKS NEED BETTER
ACCESS TO THAT AND GLAD IT'S A
MAJOR EMPHASIS FOR THE IACC TO
PLAN AND FOCUS.
>> THANK YOU, SCOTT.
AND I DON'T KNOW IF YOU'D LIKE
TO SPEAK OR I DON'T HAVE
ANYTHING -- I SEE SOMETHING IN
THE CHAT.
I WAS ABOUT TO READ FOR HER.
HER COMMENTS SO SHE SAYS PERHAPS
IT BEARS REPEATING YET AGAIN
THAT BEING AN AUTISTIC ADULT AND
PARENT ARE NOT MUTUALLY
EXCLUSIVE AND IT'S PRESUMPTIVE
TO MAKE A DECLARATION FOR EVERY
HIGH FUNCTIONING IACC MEMBER
THERE SHOULD BE A PARENT OF AN
INDIVIDUAL WITH PROFOUND AUTISM.
FIRST, HAVE YOU DONE RESEARCH TO
KNOW THIS DOESN'T EXIST AND
INTERSECTIONALITY EXISTS AND
IT'S POSSIBLE TO BE AN
INDIVIDUAL THAT WEARS A LOT OF
HATS AND YOU CAN BE A HIGH
FUNCTIONING ADULT OR PARENT OR
SIBLI
SIBLING.
HAVE YOU PEOPLE HERE ON THIS
COMMITTEE LIKE THIS.
THIRD, YOU DO NOT KNOW WHAT THE
FUNCTIONING LEVEL OF ANY IACC
MEMBER IS ONLY WHAT YOU PRESUME.
AND THIS IS PART ONE OF TWO.
I ONLY HAVE PART ONE.
IF THERE'S SOMETHING ADDITIONAL
WE CAN COME BACK AND NICOLE YOU
CAN GIVE YOUR --
>> CAN I APOLOGIZE, MS. CORRADO,
WE'LL GET TO YOU AND I WANT TO
RESPOND BECAUSE THERE'S COMMENTS
ALONG THE SAME LINES AND MY HAND
IS RAISED ON THIS SPECIFIC TOPIC
BUT IT'S IMPORTANT FOR THE
COMMITTEE THEY MENTION THIS.
I APPRECIATE THE PERSPECTIVES
THEY ARE HAVE BROUGHT NOTING
THAT THE SUBTLETIES AND
INTERSECTIONALITIES AND PEOPLE
NEED TO REPRESENT MULTIPLE
OPINIONS BUT IT'S IMPORTANT WE
GIVE THE PUBLIC SPEAKERS
INCLUDING THE PUBLIC COMMENTERS
THE RESPECT AND NOT TO ASSUME
THAT THEY ARE IMPUGNING THE
CURRENT MEMBERS OF THE COMMITTEE
AND WHAT ALISON AND OTHERS HAVE
VOICED TO ME OVER THE
INTERVENING SIX MONTHS IS THAT A
LOT OF A LOT OF THE DIALOGUE HAS
BEEN AROUND ADULTS WITH AUTISM
AND SELF-ADVOCATES AND I AGREE
WE HAVE SELF-ADVOCATES ON THE
COMMITTEE WITH VERY WIDE LEVELS
OF FUNCTIONING AND MS. SINGER
AND OTHERS HAVE BEEN GIVING
VOICE TO WHAT THEY PERCEIVE
RIGHT OR WRONG TO BE A RELATIVE
NEGLECT OF ISSUES THAT ARE
PLAGUING MANY MEMBERS OF OUR
COMMUNITY THAT AFFECT
INDIVIDUALS AND FAMILIES WHERE
PEOPLE WITH AUTISM ARE SO
PROFOUNDLY AFFECTED THEY ARE
UNABLE TO COMMUNICATE FOR
THEMSELVES.
AND WE HAVE SOME OF THOSE
ADVOCATES HERE AROUND THE TABLE
AND WE HAVE SOME OF THOSE
ADVOCATES IN OUR COMMUNITY.
THOSE VOICES ARE NOT ABSENT FROM
THE TABLE BUT I HAVE HEARD FROM
MANY IN THE COMMUNITY IS THEY'RE
CONCERNED THIS PARTICULAR
REITERATION OF THE IACC HAS NOT
YET ADDRESSED THOSE ISSUES AND
THAT'S THE VOICE THAT ALISON WAS
RAISING AT THAT POINT.
I WANT TO REASSURE EVERYONE THAT
I CONSIDER IT VERY IMPORTANT
THAT THIS COMMITTEE ADDRESS
ISSUES OF IMPORTANCE TO THE FULL
RANGE, THE FULL SPECTRUM OF
AUTISM AND WE WILL BE ADDRESSING
THE ISSUES OF IMPORTANCE TO
PARENTS AND FAMILIES FOR THOSE
WHO SUFFER WITH SUCH INTENSE
NEEDS THAT THEY ARE I THINK
INCORRECTLY PERCEIVING THIS
COMMITTEE HASN'T DEALT WITH
THOSE PROBLEMS OR DEALING WITH
THOSE ISSUES.
I WANT TO MAKE SURE THAT NUMBER
ONE WE HEAR ALISON AND OTHERS'
PERSPECTIVES AS BEING IMPORTANT
REMINDERS OF THE ISSUES WE HAVE
NOT YET GOTTEN TO AND US TO TAKE
UP THE CHARGE BEHIND THE WORDS
AND LET'S TAKE THOSE CONCERNS
AND ISSUES TO HEART.
I WANTED TO RESPOND DIRECTLY AND
I REALLY APPRECIATE EVERYONE
SPEAKING UP ON THIS TOPIC AND
I'M SURE MORE WILL HAVE MORE TO
SAY.
I'LL CEDE BACK TO YOU SUSAN AND
NEED TO GIVE NICOLE HER MINUTES
OF PUBLIC COMMENT.
THANK YOU.
>> THANK YOU.
SO YES, I'LL CIRCLE BACK TO
NICOLE NOW TO GIVE HER PUBLIC
COMMENT.
>> I'LL SAY THAT I FULLY AGREE
WITH WHAT DR. GORDON WAS SAYING
IS THAT YES, WE DO NEED TO BE
LOOKING AT THE ENTIRE SPECTRUM.
I HAVE A NEIGHBOR WHO HAS
PROFOUND AUTISM AND SHE IS A
FRIEND AND HER NEEDS ARE VERY
DIFFERENT FROM MINE BUT HER
NEEDS ARE JUST AS IMPORTANT AS
MINE.
HER NEEDS ARE MUCH HIGHER AND I
CANNOT SAY WHAT IT IS TO LIVE
HERE EXPERIENCE BECAUSE I AM NOT
HER AND AUTISM IS A SPECTRUM AND
I CARE ABOUT THE ENTIRE
SPECTRUM.
I CONSIDER MYSELF
NEURO-DIVERGENT BECAUSE AUTISM
SAY BIG SPECTRUM AND PART OF A
WIDER NEURO-DIVERGENT COMMUNITY.
THANK YOU FOR SAYING THAT.
I WOULD LIKE TO JUST READ OUT
WHAT I HAVE WRITTEN.
WHAT I WROTE IS I AM AUTISTIC
AND EXPERIENCED BEHAVIOR AND
WROTE AN ARTICLE BASED ON LIVED
EXPERIENCE BASED ON MISSING
AUTISTIC PERSONS AND THERE'S A
LINK ON THE GOVERNMENT WEBSITE.
I DO NOT AGREE WITH TRACKING
DEVICES UNLESS THEY CAN EASILY
BE REMOVED AND ARE CONSENTED TO.
THERE MAY BE CASES WHERE
NON-CONSENTING PERSON OR ADULT
WITH DEMENTIA OR PROFOUND AUTISM
MAY WEAR A MOVEABLE TRACKER BUT
THE POINT MUST BE TO IMPROVE
INDEPENDENCE AND THAT WILL LOOK
DIFFERENT FOR EVERY PERSON AND
SOME PEOPLE IT WILL BE A JOINT
DECISION BETWEEN CAREGIVER AND
INDIVIDUAL.
A TRACKING DEVICE SHOULD NOT BE
USED TO FURTHER RESTRICT A
PERSON THEREFORE THE DEFAULT FOR
PURCHASE MUST BE SELF-SIGN UP
FOR ADULTS AND ADULTS WHO MAY
HAVE MODERATE TO LOWER SUPPORT
NEEDS OBVIOUSLY.
I AM AUTISTIC AND LIVE IN
TORONTO, CANADA.
AND INTERESTED IN THE TOPIC OF
[INDISCERNIBLE] AND FROM THE
PERSPECTIVE OF AN AUTISTIC
PERSON AND INVOLVED IN A
RESEARCH PROJECT ON BEHAVIOR AND
WHILE TRACKING DEVICES DO NOT
ALWAYS PREVENT DROWNING DEATHS.
THE GRANT PROGRAM SHOULD BE USED
TO SUPPORT SWIMMING LESSONS AND
OTHER SPORTS PROGRAMS, OFTEN
THEY SWIM TO GET RID OF ANXIETY
AND PENT UP ENERGY AND TEACH
AUTISTIC PERSONS THE DANGERS OF
ELOPEMENT AND HEALTHY
ALTERNATIVE TO THE BEHAVIOR AND
MENTAL HEALTH PERSONS FOR
AUTISTIC PERSONS AND VARIOUS
SUPPORT NEEDS AND COMMUNICATION
METHODS INCLUDING AN AUTISTIC
CRISIS PHONE LINE THAT ACCOUNTS
FOR MISSPELLING AND SEXUAL
EDUCATION AND CONSENT EDUCATION
AND SAFE PLACE FOR AUTISTIC
PERSONS AND MANDATORY EDUCATION
FOR ALL FIRST RESPONDERS AND
HOUSING SUPPORTS FOR THOSE WHO
WANT TO LIVE INDEPENDENTLY.
>> SO PART TWO FROM MARINIKA,
PLEASE NOTE THERE'S MANY
CONSIDERED COGNITIVELY IMPAIRED
AND THIS IS CLEARLY NOT GOING TO
BE THE CASE FOR ALL PEOPLE.
BUT YET ANOTHER REASON WHY A ONE
SIZE FITS ALL APPROACH DOES NOT
FIT ANYONE NOR HELP ANYONE.
THE ICD11 PROVIDES MORE
DESCRIPTION AND COULD BE A
POSSIBILITY.
LASTLY, I'M NOT NECESSARILY
OPPOSED TO THE TERM PROFOUND
AUTISM.
A NAME IS A NAME.
WHAT I AM OPPOSED TO IS ASSUMING
SOME INDIVIDUALS DON'T MATTER TO
INDIVIDUALS THOSE DIFFERENT THAN
THEM.
THAT'S THE END OF THAT.
THANK YOU FOR SHARING.
>> THEY'RE ERASING THE LOVED
ONES BEFORE OUR EYES IF A
NON-AUTISTIC PARENT CAN'T HAVE A
PROFOUNDLY AUTISTIC CHILD.
WHAT MAKES ANYONE THINK WE'RE
ONLY SHARING OUR OWN PERSPECTIVE
BECAUSE WE ARE ON THE SPECTRUM
THAT MEANS APPARENTLY WE'RE
CAPABLE OF ALSO CARING ABOUT AND
ADVOCATING FOR THE PERSPECTIVE
OF OUR COLLEAGUES AND CHILDREN
AND THOSE WHO DIFFER FROM US.
>> THANK YOU.
SO NEXT WE WILL HEAR FROM JENNY.
MAYBE SHE STEPPED AWAY.
WE'LL HEAR FROM SAM CRANE.
>> SORRY, I HAD TO GET MYSELF
OFF MUTE AND BACK ON CAMERA.
I WANTED TO ADD THAT SOME OF THE
POINTS ARE VERY IMPORTANT AND
WHAT WE'RE MISSING HERE IS THE
FACT THAT PERCEPTIONS ASIDE, THE
AUTISTIC MEMBERS OF THIS
COMMITTEE HAVE OFTEN
CONSISTENTLY BEEN THE BRINGING
UP THE NEEDS FOR MORE LONG-TERM
SUPPORT AND COMMUNICATION
SUPPORTS AND MORE RESEARCH INTO
CO-OCCURRING MEDICAL CONDITIONS.
I THINK THAT WE REALLY NEED TO
START MOVING BEYOND JUST SAYING
AUTISTIC PEOPLE VERSUS
NON-AUTISTIC PARENTS.
MANY OF US ARE BOTH AS POINT
WAS POINTED OUT AND ONE OF THE
THINGS WE NEED TO THINK ABOUT IN
TERMS OF THE PROFOUND AUTISM
LABEL IT ACTUALLY OBSCURES WHAT
WE'RE TALKING ABOUT.
ONE OF THE THINGS I'M NOT
CONCERNED ABOUT TALKING ABOUT
PEOPLE WITH SIGNIFICANT SUPPORT
NEEDS BUT LET'S TALK ABOUT
PEOPLE WITH INTELLECTUAL
DISABILITIES AND PEOPLE WHO SELF
-HARM AND HAVE SIGNIFICANT
INDEPENDENT LIVING CHALLENGES
AND PEOPLE WHO NEED AAC.
THOSE ARE NOT ALWAYS SEEN
TOGETHER.
THERE'S A LOT OF PEOPLE WITH
MANY DIFFERENT COMBINATIONS OF
THESE AND SOMETIMES WHEN WE TALK
ABOUT JUST ONE ACCESS PROFOUND
VERSUS HIGH FUNCTIONING, WE'RE
NOT CAPTURING THE PEOPLE WE WANT
TO CAPTURE AND WE'RE NOT
NECESSARILY ADDRESSING ALL THE
PEOPLE WE WANT TO ADDRESS.
>> THANK YOU, SAM.
WE'LL TAKE THREE MORE COMMENTS
AND THEN TRY TO CLOSE THE
SESSION OUT.
NEXT IS PAUL WANG.
>> I WANT TO REGISTER MY REPORT
FOR THE COMMENTS SAM MADE AND I
WAS A CO-AUTHOR OF THE LANCET
REPORT.
AND THE THRUST OF ALISON'S
REMARKS ARE THE THRUST THAT IT'S
ESSENTIAL TO ENSURE SUPPORTS AND
SERVICES ARE MADE AVAILABLE AND
MADE ACCESS ABLE TO THOSE WITH
THESE EXTENSIVE SUPPORT AND
SERVICE NEEDS AND RESEARCH IS
FOCUSSED ON THIS PARTICULAR
GROUP.
THIS POINT IS INDEPENDENT OF
WHETHER I.Q. IS A PREDICTOR OF
WHO NEEDS EXTENSIVE SUPPORT
NEEDS.
IT'S INDEPENDENT OF WHAT THE
COMPOSITION OF WHAT THE
COMMITTEE MIGHT BE.
IT'S INDEPENDENT OF WHETHER YOU
LIKE THE TERM, QUOTE, PROFOUND
AUTISM AND WANT TO USE THAT
EXTENSIVELY OR NOT AND IT SHOULD
BE PART OF THE NEURODIVERSITY
PERSPECTIVE BECAUSE IT'S NOT
JUST THOSE MORE FUNCTIONAL BUT
DIVERSITY IS DIVERSE AND
INCLUDES THIS IMPORTANT GROUP
WHERE WE HAVE TO ENSURE SPORTS
AND SERVICES ARE MADE AVAILABLE.
THANK YOU.
-- SUPPORTS AND SERVICES ARE
MADE AVAILABLE.
>> THANK YOU, PAUL.
NEXT ALICIA HALLADAY.
>> I WON'T TAKE UP TOO MUCH TIME
BECAUSE I THINK THERE'S
MISUNDERSTANDING ABOUT THE TERM
PROFOUND AUTISM AND WE'RE LUCKY
TO HAVE CATHY LORD WHO LED THE
COMMISSION TO EXPLAIN WHAT
EXACTLY THIS LABEL IS AND HOW IT
IS TO BE USED.
I WILL ALSO SAY THAT WHILE I
JUST JOINED AS A MEMBER, I'VE
BEEN GOING TO IACC MEETINGS
BEFORE COVID AND WATCHING
MEETINGS FOR YEARS AND SOME OF
THEE ISSUES AROUND THINGS LIKE
EMPLOYMENT AND HOUSING HAVE BEEN
DEBATED ON THESE IACC MEETINGS
AND IN FACT THIS LABEL OF
PROFOUND AUTISM SEEKS TO MAYBE
RESOLVE SOME OF THE CONTROVERSY
AROUND APPROPRIATE HOUSING AND
APPROPRIATE EMPLOYMENT OPTIONS.
ALSO, QUICKLY, I WANT TO ADDRESS
THE COMMENTS THAT WERE MADE
ABOUT SCREEN TIME AND I WANT TO
PUT A PLUG IN FOR SOMETHING
CALLED AUTISM NAVIGATOR AND BABY
NAVIGATOR.
THIS IS A PROJECT LED BY FLORIDA
STATE UNIVERSITY AND PROVIDES
WEBINARS TWICE A MONTH TO
FAMILIES AND PROFESSIONALS ABOUT
NOT JUST DETECTING EARLY SIGNED
OF AUTISM BUT PROVIDING
ONE-ON-ONE SUPPORT FROM PARENTS
TO INFANTS AND TODDLERS HOW TO
INCORPORATE SKILLS AROUND THINGS
LIKE COMMUNICATION, FOLLOWING
DIRECTIONS, SOCIAL INTERACTION
AND IT'S DONE MOBILY BUT DOES
NOT RELY ON SCREEN TIME.
PERHAPS WE CAN HAVE A FURTHER
CONVERSATION ABOUT IT BUT I
WHOLEHEARTEDLY AGREE SOME OF THE
PREEMPTIVE MOVES MAY ALTER THE
TRAJECTORY.
>> THANK YOU.
OUR LAST COMMENT.
>> I'M IVANOVA SMITH FROM
WASHINGTON STATE AND I WANTED TO
SAY AS AN IACC AND SELF-ADVOCATE
I'M VERY PASSIONATE ABOUT MAKING
IT SO AUTISTICS ARE TREATED WITH
RESPECT.
MY CONCERN WITH THE COMMENTS
ABOUT PROMOTING THIS PROFOUND
AUTISM IDEA IS THAT IT'S USED TO
RESTRICT PEOPLE'S LIVES AND WILL
BE USED TO JUSTIFY
INSTITUTIONALIZATION AND
RESTRICT PEOPLE'S CIVIL RIGHTS
BASED ON THAT DIAGNOSIS.
WHEN I WAS BORN, I LEARNED FIRST
HAND HOW THESE DIAGNOSES ARE
USED TO PUT PEOPLE IN
INSTITUTIONS AND SEGREGATE
PEOPLE IN WORK AND SEGREGATE
PEOPLE FROM THE COMMUNITY.
THAT IS MY CONCERN WITH THE
PROFOUND AUTISM IDEA IS IT WOULD
BE USED TO RESTRICT PEOPLE'S
RIGHTS.
HOW WOULD WE MAKE SURE THAT
PROFOUND AUTISM WILL NOT BE USED
IN THAT WAY TO RESTRICT PEOPLE'S
RIGHTS AND MAKE IT SO PEOPLE ARE
ADMINISTRATION L
INSTITUTIONALIZED AND I DON'T
THINK ANYBODY SHOULD BE
ADMINISTRATIONALIZED AND --
INSTITUTIONALIZED AND RESTRICTED
BECAUSE THAT IS HOW THESE TERMS
HAVE ALWAYS BEEN USED
HISTORICALLY.
THE FUNCTION LABELS USED TO
SEGREGATE AND PUT THEM IN
INSTITUTIONS AND NOT GIVE THEM
AN EQUAL EDUCATION SAYING PEOPLE
DON'T NEED AN EQUAL EDUCATION.
SAYING PEOPLE DON'T NEED THIS
ORE -- OR THAT.
THAT'S NOT HOW WE SHOULD USE THE
TERM AND IF THAT'S THE REASON WE
WANT THE TERM IT WILL HURT
PEOPLE AND THE PROFOUNDLY
AUTISTIC.
I RATHER WE MAKE SURE ANY
FUNCTION LABEL WE USE WILL NOT
RESTRICT PEOPLE'S CIVIL RIGHTS
AND WOULD NOT FORCE PEOPLE TO BE
PUT IN AN INSTITUTION.
THAT'S MY CONCERN.
WE DON'T WANT THIS LANGUAGE TO
BE USED TO RESTRICT PEOPLE'S
RIGHTS AND NOT JUST
INSTITUTIONALIZATION BUT
GUARDIANSHIP, EDUCATION, EVEN
EDUCATION ON HOW OUR BODIES ARE.
I DON'T WANT PROFOUND AUTISM BE
USED TO SAY YOU ARE MENTALLY A
CHILD SO YOU DON'T GET TO DO
ADULT THINGS BECAUSE OF THE
LABEL.
I WANT TO MAKE SURE THE LABEL
WILL NOT DO THAT.
THANK YOU.
>> IF I MIGHT, I WANT TO INJECT,
THANK YOU VERY MUCH FOR THAT
PERSPECTIVE AND IT IS REALLY
IMPORTANT WE NOT USE LABELS
IMPROPERLY, HOWEVER, PLEASE IF
SOMEONE ELSE ON THE COMMITTEE
WOULD LIKE TO SAY SOMETHING AND
IF ANYONE WANTS TO BRING UP,
IVANOVA YOUR COMMENT BRINGS TO
HEART MS. SINGER'S COMMENTS IN
THAT THERE ARE SOME INDIVIDUALS
ON THE SPECTRUM AND IT'S QUITE A
LOT.
I DON'T KNOW IF IT'S 50% OR 20%,
BUT THERE'S MANY INDIVIDUALS WHO
NEED TO BE IN PLACES TO GET THE
SUPPORT TO ENABLE THEM TO LIVE
THEIR LIVES.
THEY NEED TO BE IN PLACES YOU
MIGHT CALL INSTITUTIONS.
THEY NEED TO BE UNDER CARE
INCLUDING THE TIMES NEED TO HAVE
TRUSTEES.
>> CAN WE TAKE A BREAK?
>> I RESPECTFULLY DISAGREE.
THEY SAID THAT ABOUT ME.
>> I'M NOT SUGGESTING --
>> I DON'T WANT ANYONE TO BE SAD
ABOUT THAT.
>> I'M NOT SUGGESTING.
IVANOV, PLEASE, GAVE YOU THE
OPPORTUNITY.
PLEASE GIVE ME THE OPPORTUNITY
TO SPEAK.
PLEASE GIVE THE THE OPPORTUNITY
TO RESPECT AS WELL.
I'M NOT SUGGESTING YOU'RE ONE OF
THOSE PEOPLE I'M SUGGESTING
THERE'S SOME PEOPLE AROUND THE
TABLE CARING FOR INDIVIDUALS WHO
DO NEED THAT LEVEL OF CARE AND
THOSE VOICES NEED TO BE ABLE TO
BE EXPRESSED AROUND THIS TABLE.
AND TO SAY NO INDIVIDUAL WITH
DEFICITS THERE ARE THOSE WHO'S
DEFICITS AND CARE NEEDS ARE
SIGNIFICANT ENOUGH THEY NEED
THAT CARE.
I'M NOT PRETENDING TO TELL YOU
WHAT PERCENTAGE IS AND I'M NOT
SUGGESTING, IVANOV, YOU ARE ONE
OF THEM BUT SUGGESTING THAT'S A
VOICE WE NEED TO BE ABLE TO HEAR
AROUND THE TABLE AND IF WE DON'T
ALLOW THAT VOICE AROUND THE
TABLE WE'RE NOT DOING OUR DUE
DILIGENCE.
>> NO ONE IS PREVENTING THEM
FROM BEING HEARD, JOSH.
WE'RE DISAGREEING, VERY
RESPECTFULLY AND POLITELY AND
GETTING NEGATIVE FROM YOU ABOUT
SPEAK OUR TRUTH.
>> I DON'T MEAN TO BE GIVING
NEGATIVE FEEDBACK ABOUT YOU
SPEAKING YOUR TRUTH.
AS A SAID I VALUE THE VIEWS
TREMENDOUSLY BUT POINTING OUT OF
THE VOICES WE'VE HEARD TODAY, WE
HAVEN'T HEARD THAT OTHER SIDE
AND IT'S NOT BECAUSE IT DOESN'T
EXIST.
>> YOU ALL ASSUMING.
>> I WANT TO SAY.
>> ANYONE WHO NEEDS TO TAKE A
BREAK FEEL FREE TO DO SO BUT I
DONT WANT TO CUT THE
CONVERSATION SHORT.
>> I WANT US TO UNDERSTAND THIS
ISN'T ABOUT WHO HAS DIFFERENT
EXPERIENCES.
MANY OF US HAVE DIRECT
EXPERIENCES WITH PEOPLE WITH
EXTREMELY HIGH SUPPORT NEEDS.
THIS IS A POLITICAL DISAGREEMENT
BEING RECAST AS A DISAGREEMENT
BETWEEN PEOPLE WITH DIFFERENT
EXPERIENCES AND I DON'T THINK
THAT IT IS ABOUT DIFFERENT
EXPERIENCES.
WE HAVE MANY PEOPLE WHO HAVE
SUPPORTED PEOPLE WITH EXTREMELY
HIGH SUPPORT NEEDS IN THE
COMMUNITY USING HOME AND
COMMUNITY-BASED SERVICES, 24/7
SUPPORTS IN THE COMMUNITY.
SO SAYING THESE SUPPORTS HAVE TO
BE DELIVERED IN AN INSTITUTION I
THINK IS A POLICY DISAGREEMENT
NOT A DISAGREEMENT OVER WHO'S
NEEDS ARE BEING REPRESENTED.
>> THIS IS JENNIFER JOHNSON WITH
ACL AND WANT TO ECHO SAM'S
COMMENTS WHAT WE'RE TALKING
ABOUT IS REALLY WE LACK THE
ADEQUATE HOME AND
COMMUNITY-BASED SERVICES AND
SUPPORTS FOR INDIVIDUALS TO NOT
ONLY BE ABLE TO SPEAK FOR
THEMSELVES AND COMMUNICATE IN A
WAY THAT PEOPLE CAN UNDERSTAND
THEM.
I THINK WE MAKE A MISTAKE WHEN
WE SAY WHAT WE MIGHT WANT TO
CHARACTERIZE PEOPLE AS BEING
NON-VERBAL THEY'RE STILL
COMMUNICATING IN ONE WAY, SHAPE
OR FORM AND DON'T AT THIS POINT
IN TIME ACCEPT THE VARIOUS WAYS
IN WHICH PEOPLE CAN COMMUNICATE
AND THIS COMMITTEE ISN'T
STRUCTURED IN A WAY THAT ALLOWS
FOR THAT COMMUNICATION TO OCCUR.
I DO THINK WE NEED TO BE CAREFUL
ABOUT HOW WE'RE CHARACTERIZING
THESE THINGS AND ALSO
ACKNOWLEDGE THAT THE WAY WE'RE
CHARACTERIZING THIS IN THE
CURRENT CONTEXT OF THE SERVICES
AND SUPPORTS BEING MADE
AVAILABLE TO PEOPLE TO BE ABLE
TO LIVE INDEPENDENTLY IN THE
COMMUNITY AND THAT IS VERY
DIFFERENT IN EACH STATE AND
DIFFERENT IN EACH TERRITORY.
AND IT IS AS SAM SAID, VERY MUCH
DRIVEN BY POLITICS AND WHAT
WE'RE WILLING TO INVEST IN TERMS
OF INSTITUTIONAL CARE VERSUS
HOME AND COMMUNITY-BASED
SERVICE.
I THINK WE NEED TO BE VERY
CAREFUL WHEN WE ARE TRYING TO
CHARACTERIZE THAT INDIVIDUALS
WE'RE TALKING ABOUT THE WAY THEY
CAN PARTICIPATE AND REPRESENT
THEMSELVES IN THESE
CONVERSATIONS AS IT RELATES TO
THE CURRENT LEVEL OF SERVICES
AND SUPPORTS THEY'RE GETTING AND
THAT'S ALSO DRIVEN BY THE
RESEARCH.
I JUST WANT TO ADD THAT AND ECHO
SAM'S COMMENTS ON THAT REGARD.
>> VERY GOOD.
AND JENNIFER, LET ME BE CLEAR, I
WAS CLEAR TO STATE THOSE WERE
THOSE THAT NEED THE LEVEL OF
CARE SHE WAS INFERRING BY THE
TERM INSTITUTION.
>> JUST TO RESPECTFULLY
DISAGREE, THE REASON THEY NEED
THE INSTITUTIONAL SERVICES AT
THIS POINT IN TIME IS BECAUSE WE
DON'T HAVE ADEQUATE HOME AND
COMMUNITY-BASED SERVICES.
AS SAM SAID PEOPLE CAN BE SERVED
IN THE COMMUNITY AND WE'VE SEEN
PEOPLE --
>> JENNIFER, I'M NOT DISAGREEING
WITH YOU.
>> THAT'S THE WAY IT'S COMING
OFF.
>> I APOLOGIZE IF THAT'S THE
IMPLICATION.
I WAS TRYING TO BE CLEAR IT'S
THE LEVEL OF NEED AND NOT THE
VENUE OF CARE.
PERHAPS WE SHOULD TAKE MATTHEW
AND NETTA.
>> AND JENNY MAE FAN SENT A
COMMENT IN AS WELL.
>> RETURNING TO THE RESEARCH
WHICH IS THE CHARGE AND FOCUS OF
THE COMMITTEE IS ADVISING THE
FEDERAL GOVERNMENT ON THE
RESEARCH PORTFOLIO AND WHERE IT
SHOULD HEAD, WHICH THEN RELATES
TO SERVICE AND POLICY AND
ULTIMATELY POLITICS.
I THINK THAT IT'S IMPORTANT THE
LANCET COMMISSION WHICH SPENT
ALMOST THREE YEARS WORKING ON
THIS, ONE OF THE FEW VERY CLEAR
RECOMMENDATIONS THEY MADE WAS
THIS DISTINCTION ABOUT PROFOUND
AUTISM AND THE PURPOSE, I THINK,
WAS TO DRIVE MORE RESEARCH AND
ULTIMATELY MORE SERVICE.
AND IT'S IMPORTANT TO POINT OUT
THE AUTISM RESEARCH WORLD HAS
TURNED ON ITS HEAD IN THE LAST
20 YEARS.
SO WE PUBLISHED A PAPER IN 2018
IN JAD WHERE WE ANALYZED ALL THE
TREATMENT STUDIES IN AUTISM THAT
WE COULD GET OUR HANDS ON FROM
1990 TO 2013.
THERE WERE 367 STUDIES AND WE
CAREFULLY ANALYZED THEM FOR
INCLUSION OF PEOPLE WHO HAD
EITHER INTELLECTUAL DISABILITY,
MINIMAL VERBAL ABILITY, WHICH IS
HOW WE DEFINED IT AT THAT TIME
OR LOWER ADAPTIVE FUNCTIONING.
WHICH IS VERY SIMILAR TO THE
PROFOUND AUTISM DEFINITION
PROPOSED BY THE LANCET AND THE
FINDING WAS SIMPLE WHICH IS THAT
IT WENT FROM ALMOST ALL THOSE
TREATMENT STUDIES INCLUDING THAT
GROUP TO ABOUT A THIRD IN 23
YEARS INCLUDING THEM SO IN OTHER
WORDS TWO-THIRDS OF THE RESEARCH
STUDIES DONE DID IN THE INCLUDE
INDIVIDUALS WITH WHAT WOULD
CURRENTLY BE CALLED PROFOUND
AUTISM.
I THINK THAT'S A VERY IMPORTANT
CONTEMPT TO HAVE IN MIND AND
PERHAPS WHY WE SEE SOME OF THE
REACTION OF PEOPLE FEELING THEIR
NEEDS TO BE SOME GREATER -- THIS
IS HAS NOW BECOME AN UNDER
RESEARCHED AND UNDER REPRESENTED
GROUP WHICH IS A GREAT IRONY
GIVEN WHERE AUTISM STARTED
THEREFORE A NEED TO FOCUS ON
THIS GROUP AND I WOULD SUGGEST
AN OBJECTIVE IN THE NEW
STRATEGIC PLAN SHOULD BE ON
RESEARCH SERVICES AND POLICY FOR
THOSE WITH PROFOUND AUTISM.
THANK YOU.
>> THANK YOU, MATTHEW.
LAST BUT NOT LEFT, YETTA,
PLEASE.
>> I WAS GOING TO SAY THAT I
THINK --
>> I'M SORRY, NICOLE, THE
DISCUSSION PERIOD IS RESERVED
FOR MEMBERS OF THE COMMITTEE
ITSELF.
MY APOLOGIES.
YETTA.
>> THANKS EVERYONE FOR YOUR
COMMENTS.
AS A PARENT OF A YOUNG ADULT WHO
HAS AUTISM INTELLECTUAL
DISABILITY THIS IS VERY
EMOTIONAL, RIGHT.
I'M NOT GOING PRETEND TO NOAH IT
IS TO BE SOMEONE WHO IS AUTISTIC
BUT I THINK AT THE ROOST ALL OF
THIS IS ACCESS TO SERVICES.
MAKING SURE THAT AUTISTIC
INDIVIDUALS GET THE LEVEL OF
SUPPORT THEY NEED AND THAT IS
WHY WE WERE SELECTED TO BE ON
THIS COMMITTEE TO GIVE THAT
VOICE TO TAKE OUR LIVED
EXPERIENCE AND MAKE SURE THAT WE
ARE THINKING ABOUT THE COMMUNITY
AS A WHOLE.
SO I VALUE EVERYONE THAT IS HERE
AND I VALUE EVERYONE WHO -- IT
IS EITHER PARENT OR INDIVIDUAL ,
RIGHT.
WE ALL HAVE THESE EXPERIENCES
AND THEY HAVE VEILED.
THE CHALLENGE IS MAKING SURE AND
WHAT WE ARE CHARGED WITH IS
MAKING SURE THE RESEARCH IS
REFLECTIVE OF WHERE THE NEEDS
AND WHERE WE NEED TO BE
FOCUSSED.
WHO'S HIGH FUNCTIONING, WHO'S
NON-SPEAKING.
IT GETS TO BE OVERWHELMING AND
FRUSTRATING TO BE QUITE HONEST
FOR ME SPECIFICALLY.
I DON'T DO THIS WORK TO SUPPORT
MY SON.
TO SUPPORT OTHERS OR WORK IN
COMMUNITY AND PARTNER WITH
AUTISTIC INDIVIDUALS FOR THERE
TO BE THIS FIGHTING.
I REALLY WANT US TO TAKE A DEEP
BREATH, WHICH I'M DOING RIGHT
NOW AND WANT US TO REALLY FIGURE
OUT WHERE WE NEED TO BE
FOCUSSING OUR ATTENTION OF WHAT
IT IS WE NEED IT GET DONE
BECAUSE I WANT TO ENSURE THAT
WHEN I CLOSE MY EYES, THAT MY
SON IS SAFE.
THAT ALL OF YOU ARE SAFE.
THAT YOU FEEL LIKE YOU ARE A
MEANINGFUL PART OF SOCIETY AND
YOU FEEL INCLUDED.
JUST LIKE I'M SOMEONE WHO IS NOT
AND WANT THAT FOR MYSELF.
THAT'S WHY I SERVE.
I BELIEVE THAT'S WHY WE ALL
SERVE.
AND SO I JUST WANT EVERYONE TO
BRING IT BACK AND FOCUS ON WHAT
IT IS WE NEED TO DO AND IT'S
HEALTHY TO AGREE AND DISAGREE
BUT I DON'T WANT US TO LOSE
FOCUS.
I APPRECIATE YOU ALL'S COMMENTS
AND THANK YOU FOR GIVING ME A
MOMENT TO SPEAK.
>> THANK YOU, YETTA, THAT'S A
WONDERFUL WAY TO CONCLUDE THIS.
THERE WERE A LOT OF POWERFUL
STATEMENTS AND A LOT OF EMOTION
BUT I THINK A LOT OF POINTS WERE
WELL SAID.
AND WE NEED UNFORTUNATELY TO
TRANSITION NOW TO THE NEXT
SESSION.
WE WERE MEANT TO START AT 1:45.
WE'RE ABOUT 15 MINUTES LATE.
WITH APOLOGIES TO THOSE WHO
WOULD LIKE A BREAK BETWEEN THIS
AND THE NEXT SESSION, WE'LL MOVE
RIGHT INTO THE NEXT SESSION.
WE'LL COME BACK TO THE LANCET
COMMISSION REPORT BUT NOW WE'LL
TURN TO A PRESENTATION FROM
DR. MATTHEW MAENNER FROM THE
CENTERS FOR DISEASE CONTROL AND
PREVENTION, THEIR SURVEILLANCE
TEAM.
WILL SHARE THE LATEST UPDATES
FROM CDC ON AUTISM PREVALENCE.
DR. MAENNER.
>> THANK YOU FOR ALLOWING ME TO
PRESENT ON FROM THE NETWORK.
THERE WERE TWO SURVEILLANCES
FROM 2018 I'LL REVIEW THE MAIN
FINDINGS AND DESCRIBE THE
CURRENT STATE OF THE NETWORK.
THE NETWORK SAY POPULATION-BASED
SURVEILLANCE SYSTEM THAT
MONITORS CHILDREN WITH AUTISM
AND REPORTS ON AUTISM EVERY TWO
YEARS AND IN GREEN ARE THE 11
PARTICIPATING SITES AND WHILE
THIS ISN'T A NATIONALLY
REPRESENTATIVE SAMPLE IT COVERS
A LARGE POPULATION AND COMPOSED
OF GEOGRAPHICALLY AND
DEMOGRAPHICALLY DIVERSE
POPULATIONS AND THIS IS THE
CURRENT NETWORK TO THE 2016
NETWORK.
THERE'S STILL 11 SITES OVERALL
IT'S A COMPETITIVE FUNDING
PROCESS.
CDC EXPAND THE TRACKING OF EARLY
AUTISM IDENTIFICATION AMONG
4-YEAR-OLD CHILDREN TO ALL OF
THE SITES WHILE PREVIOUSLY IT
WAS IN SUB REGIONS OF ONLY SIX
SITES SO THIS TRIPLED THE TOTAL
POPULATION MONITORED FOR THIS
ACTIVITY.
ALL THE SITES TRACK AUTISM
PREVALENCE AMONG 8-YEAR-OLD
CHILDREN AND A NEW ACTIVITY
HOPEFULLY COMING OUT LATER THIS
YEAR IS FOLLOWING UP ON CHILDREN
AT AGE 16 THAT WERE PREVIOUSLY
ASCERTAINED AT AGE 8.
THE NEW REPORT USES A NEW
DEFINITION BASED ON INFORMATION
COLLECT FROM HEALTH, EDUCATION
AND SERVICE RECORDS FROM
MULTIPLE COMMUNITY.
THEY WERE CONSIDERED TO HAVE
AUTISM IT IF THEY LIVED IN THE
SURVEILLANCE AND HAD A
CLASSIFICATION OF AUTISM OR AN
AUTISM ICD CODE A MEDICAL
BILLING CODE.
NEW THIS YEAR AND JUST FOR THE
4-YEAR-OLD CHILDREN THE ADDM
NETWORK ASCERTAINED WHERE
CHILDREN DID NOT MEET THE AUTISM
BUT HAD A DOCUMENTED SUSPICION
OF AUTISM IN THEIR RECORDS.
THIS WAS THE RESULT OF INTENSIVE
PLANNING AND EVALUATION AND
ANALYSIS AND DESCRIBE IN A PAPER
IN THE AMERICAN JOURNAL OF
EPIDEMIOLOGY LAST APRIL.
IT COMPARES THE NEW CASE
DEFINITION TO THE PREVIOUS ONE
AND PRIOR TWO SURVEILLANCE YEARS
IN ALL SITUATIONS INDICATORS
WERE SIMILAR SOMETIMES UNCHANGED
USING EITHER CASE DEFINITION
THIS CHANGE OVER TIME AND THE
NEW CASE REQUIRES LESS DATA
COLLECTION AND SIMPLIFIES THE
PROCESS FOR MANAGING AND
REVIEWING INFORMATION.
THIS ALLOWED THE ADDM NETWORK TO
DISSEMINATE RESULTS FASTER AND
FUND MORE SITES AND IN
RETROSPECT WAS MORE ROBUST TO
BARRIERS ACCESSING DATA CAUSED
BY THE PANDEMIC.
PERHAPS MOST IMPORTANT THE NEW
APPROACH MORE TRANSPARENT
REFLECTED CHILDREN ARE BEING
EVALUATED AND SERVED IN THEIR
COMMUNITIES WHICH ALIGNS WITH
THE PURPOSE OF PUBLIC HEALTH
SURVEILLANCE TO INFORM AND
ULTIMATELY IMPROVE PRACTICE.
WITH THAT BACKGROUND HERE'S SOME
FINDINGS ON THE REPORT ON AUTISM
FINDINGS AMONG 8-YEAR-OLD
CHILDREN.
THIS SHOWED THE OVERALL AUTISM
PREVALENCE FOR EVERY ADDM
SURVEILLANCE YEAR AND IT
CORRESPONDS TO ONE IN 44
CHILDREN.
WHILE THERE IS A GENERAL UPWARD
TREND OVER TIME IT'S IMPORTANT
TO REMEMBER SOME PARTICIPATING
COMMUNITIES CHANGE FROM YEAR TO
YEAR.
THESE BARS SHOW AUTISM
PREVALENCE OBSERVED AT EACH OF
THE 11 SITES AND AS IN THE PAST
THERE'S CONSIDERABLY VARIABLE
CHANGE FROM 1.7% IN MISSOURI TO
3.9% IN THE CALIFORNIA SITE.
THE GREEN AREAS OF THE BARS
INDICATE CHILDREN THAT HAVE A
DOCUMENTED AUTISM DIAGNOSIS AND
THE BLUE IS CHILDREN WHO WERE
CLASSIFIED IN AN AUTISM SPECIAL
EDUCATION PROGRAM AND PURPLE ARE
CHILDREN WITH AN ICD CODE AND
THE GROPE IS A SMALL PERCENT OF
ALL CHILDREN WHICH IS
REASSURING.
THE REPORT HAVE MORE INFORMATION
SHOWING HOW CHILDREN WERE
ASCERTAINED IN EACH SITE AND CAN
HELP IN EVALUATING SITE TO SITE
AND THIS SHOWS DIFFERENCES BY
RACE AND ETHNICITY.
THERE WAS LITTLE DIFFERENT
BETWEEN BLACK, WHITE, ASIAN
PACIFIC ISLANDER AND HISPANIC
CHILDREN AND SOME REPORTED LOWER
PREVALENCE AMONG HISPANIC
CHILDREN COMPARED TO WHITE OR
BLACK CHILDREN AND FOR THE FIRST
TIME THE ADDM NETWORK INCLUDED
AN ESTIMATE AMONG AMERICAN
INDIAN AND ALASKAN NATIVE
CHILDREN AND IT WAS A LITTLE
HIGHER THAN SOME GROUPS BUT ALSO
A SMALL POPULATION SO IT HAS A
BIT LESS PRECISION THAN THE
OTHER GROUPS.
THE ADDM NETWORK ALSO COLLECTS
OR ADAPTIVE TEST INFORMATION AND
35% HAD AN I.Q. LESS THAN 70 AND
THE PROPORTIONS AMONG BOYS AND
GIRLS ARE SIMILAR BUT THERE
CONTINUES TO BE A HIGHER
PROPORTION OF BLACK CHILDREN
WITH AUTISM CLASSIFIED AS HAVING
AN INTELLECTUAL DISABILITY
COMPARED TO BLACK OR WHITE
CHILDREN WITH AUTISM.
THE REASON IS NOT FULLY
UNDERSTOOD AND COULD BE FROM
INEQUITIES IN ASCERTAINMENT OR
SERVICES.
THIS FIGURE IS A SIMPLE ANALYSIS
COMPARING OUTCOMES BY
NEIGHBORHOOD.
PREVIOUS ADDM STUDIES HAVE SHOWN
A POSITIVE ASSOCIATION BETWEEN
NEIGHBORHOODS SOCIO ECONOMIC
INDICATORS IN AUTISM BUT AS YOU
CAN SEE HERE WITH THE SITES
THERE'S NOT A CONSISTENT PATTERN
WE WOULD HAVE SEEN IN THE PAST.
MORE FOCUSSED ANALYSIS WOULD BE
HELPFUL.
THIS SHOWS THE EARLIEST MEDIAN
AGE AND THERE HASN'T BEEN MUCH
CHANGE AND PEOPLE INTERPRETED TO
MEAN THERE'S NO PROGRESS ABOUT
THE IT MAY BE A MISLEADING
INTERPRETATION DUE TO THE METRIC
BEING USED.
IN A PAPER THAT CAME OUT THE
WEEK BEFORE THANKSGIVING WHICH
WAS THE WEEK BEFORE THE OTHER
ADDM REPORTS, DR. SHAW COMPARED
DIFFERENT METRICS OF MEASURING
EARLY AUTISM IDENTIFICATION AND
SO SUMMARIZE THE MEDIAN AGE
MEASURED USED IN THE PAST SHOWS
VERY ALSO CHANGE OVER TIME WHERE
REPRESENTING THIS AS CUMULATIVE
INCIDENT OF AUTISM HAS
QUADRUPLED OVER THE SAME TIME
PERIOD.
FURTHERMORE, REPORTING
ACCUMULATIVE INCIDENT REVEALS
RACIAL DISPARITIES MASKED WITH
THE MEDIAN AGE MEASURE.
THERE'S MORE IN THE PAPER BUT
OUTLINES THE REASONS WHY WE
CHOSE A METRIC THAT'S SENSITIVE
TO SHOWING CHANGE OVER TIME AND
IMPORTANT DISPARITIES AND THE
ARTICLE IN THE CORNER WAS
ACCOMPANIED BY A THOUGHTFUL
COMMENTARY AND IT'S TIME TO MOVE
BEYOND THE MEDIAN.
THEREFORE THE ADDM NETWORK
FOCUSES ON EARLY IDENTIFICATION
IN A SEPARATE REPORT FEATURING
CHILDREN UNDER 4 YEARS AND THESE
ARE FINDING.
THIS IS A BAR CHART OF
PREVALENCE OF CHILDREN UNDER 4
AND ANALOGOUS FOR THE 8-YEAR-OLD
CHILDREN OF 10 OF THE 11 SITES
IT WAS LOWER THAN AMONG
8-YEAR-OLDS AND CALIFORNIA WAS
THE EXCEPTION WHERE PREVALENCE
IS HIGHER AMONG 4-YEAR OLDS.
THIS FIGURE TAKES THE BARS FROM
THE PREVIOUS CHART AND THOSE ARE
NOW GRAY AND ON TOP OF THEM IN
ORANGE IS THE CHILDREN THAT WERE
ONLY SUSPECTED BUT NOT YET
IDENTIFIED AS HAVING AUTISM.
THERE'S SOME SITE TO SITE
VARIABILITY SMALL COMPARED TO
THE CHILDREN ARE IDENTIFIED WITH
AUTISM AND WHILE IN THE DATA ON
8-YEAR-OLDS WE SEE MANY AREN'T
FIRST IDENTIFIED UNTIL AGE 5 OR
LATER.
IT WAS SURPRISING TO SOME THE
SUSPECTED CHILDREN DID
RELATIVELY LITTLE TO MAKE UP THE
GAP BETWEEN THE 4 AND 8-YEAR-OLD
PREVALENCE.
THIS SHOWS AUTISM PREVALENCE
AMONG THE 4-YEAR-OLDS AND A
DIFFERENT PATTERN THAN AMONG THE
8-YEAR-OLD CHILDREN.
WHITE CHILDREN HAVE THE LOWEST
AUTISM PREVALENCE COMPARES TO
THE OTHER GROUP AND THE FINDING
FOR HIGHER PREVALENCE AMONG
HISPANIC CHILDREN ISN'T ONLY DUE
TO CALIFORNIA, IT WAS OBSERVED
AT FIVE SITES.
SO IT WILL BE INTERESTING TO SEE
IF THESE PATTERNS IF THIS IS
LIKE WHAT WE'LL SEE IN THE
FUTURE AMONG 8-YEAR-OLDS OR IF
THIS REFLECTS DIFFERENT FACTORS
ASSOCIATED WITH AUTISM
IDENTIFIED AT YOUNG AGES.
HERE, IS OUR CUMULATIVE
INCIDENTS FIGURE SHOWING A
HIGHER CUMULATIVE INCIDENT OF
AUTISM IDENTIFIED BY 48 MONTHS
AMONG CHILDREN BORN IN 2014.
SO THEY WERE FOUR IN 2018
COMPARED TO THE 8-YEAR-OLD
CHILDREN WHO WERE BORN IN 2010.
SO THROUGH AGE 4, THE YOUNGER
COHORT IN ORANGE IS OUT PACING
THE OLDER COHORT IN BLUE.
AND MOST SHOW EARLIER
IDENTIFICATION AMONG 4-YEAR-OLDS
BUT IT WILL BE INTERESTING TO
SEE IF THE TRENDS CONTINUE INTO
THE FUTURE.
I WANTED TO MENTION A FEW OTHER
THINGS THE ADDM NETWORK IS
WORKING ON THIS YEAR.
FOR THE FIRST TIME THE ADDM
NETWORK CONDUCTED A FOLLOW-UP
WITH CHILDREN 16 AND TRANSITIONS
TO ADULTHOOD AND THERE'S A PAPER
ESTIMATING HOW MANY CHILDREN
MIGHT MEET THE DESCRIPTION OF
PROFOUND AUTISM AND THE GOAL IS
TO CONTRIBUTE POPULATION DATA TO
THESE CONVERSATIONS AND TO
BETTER UNDERSTAND WHO THE TERM
MIGHT APPLY TO AND MAYBE THE
DATA CAN BE USED TO INFORM HOW
IT WOULD BE USEFUL.
THERE'S A PILOT STUDY SOME SITES
ARE DOING USING DATA LINKAGES
FOR EFFICIENT STATEWIDE
PREVALENCE ESTIMATE.
IT'S NOT TO REPLACE TO EXPLORE
WAYS TO SUFFICIENTLY GENERATE
DATA FOR COMMUNITIES WHO HAVE
NEVER HAD LOCAL DATA AND THE
ADDM NETWORK SHOULD BE WELL
SITUATED IN EVALUATING OR
SERVING CHILDREN THROUGH 2020.
THIS IS REFERENCE TO THE FOUR
ARTICLES IN THE SLIDES.
THERE'S ALSO RESOURCES IN
ADDITION TO THE SCIENTIFIC
REPORTS.
THERE'S A NICELY DESIGNED
COMMUNITY REPORT THAT SUMMARIZES
FINDINGS AND IT'S AVAILABLE IN
SPANISH ON THE WEB.
THERE'S A SLIDE DECK WITH THE
LATEST ADDM FINDINGS INCLUDE THE
SLIDES I USED IN THIS
PRESENTATION DIVISION HERE AND
ALSO CREATES EASY READ SUMMARIES
FOR THE AND WE MAINTAIN AN
ACTIVE DATA SHOWING ADDM AND
AUTISM DATA FROM THREE OTHER
STATE-BASED DATA SOURCES TO LOOK
UP WHAT'S AVAILABLE FOR WHENEVER
STATE YOU'RE IN.
WE HOPE YOU FIND THESE HELPFUL.
I'D LIKE TO ACKNOWLEDGE AN
AMAZING GROUP OF SCIENTISTS AND
PUBLIC HEALTH PROFESSIONALS THAT
MAKE THIS WORK SUCCESSFUL.
IT'S A LOT OF WORK AND HARD WORK
ESPECIALLY WITH THE CHALLENGES
OF THE PAST COUPLE YEARS AND A
PRIVILEGE TO HAVE SUCH
PASSIONATE AND BRILLIANT
COLLEAGUES.
THANK YOU FOR YOUR ATTENTION AND
I'M HAPPY TO RESPOND TO
QUESTIONS OR COMMENTS IF THERE'S
TIME.
>> THANK YOU VERY MUCH.
DR. MAENNER.
DID I GET THE PRONUNCIATION
CORRECT?
>> YOU DID.
>> WE HAVE A NUMBER OF
QUESTIONS.
STARTING WITH DR. JOE PIVEN.
PLEASE.
>> THANK YOU FOR A REALLY CLEAR
PRESENTATION AND THOUGHT I'D
TAKE THIS OPPORTUNITY TO ASK A
QUESTION.
NOT MEANT AS A CRITICISM.
THERE'S ALWAYS POTENTIAL FOR
CONFOUNDERS AND BIASES, BUT CAN
YOU SPEAK TO THE ISSUE OF
ASCERTAINMENT BIAS WHEN YOU
ASCERTAIN THE SAMPLES THROUGH
THE SCHOOL SYSTEM.
THERE'S LOTS OF WAYS TO DO THESE
STUDIES AND IN THE OLD DAYS I'M
HOLD ENOUGH TO REMEMBER
PSYCHIATRIC DISORDER THE ECA
STUDIES WHERE ASCERTAINMENT AT
SOME SITES WAS DOOR TO DOOR.
AS A CHILD PSYCHOLOGIST I KNOW
THE PRESSURES WE HAVE TO MAKE A
DIAGNOSIS OF AUTISM TO GET
SERVICES FOR KIDS AND ALSO IT
WAS -- I THINK IT'S NOTABLE THE
VARIATION OF PREVALENCE RATES IN
CALIFORNIA TO MINNESOTA TO
MARYLAND AND I JUST WANTED YOU
TO SPEAK TO THE ISSUE OF HOW
THAT ASKER STAINMENT SCHEME MAY
BE AFFECTING THE NUMBERS.
>> IT'S A BIG ISSUE TO CONSIDER
AND REALLY SHOULD BE A CORE PART
OF THE INTERPRETATION OF ANY OF
THESE.
IN TERMS OF YOUR QUESTION ABOUT
IDENTIFYING TARGET POPULATION
FOR THE PUBLIC HEALTH
SURVEILLANCE SYSTEM AND EVERY
CHILD THAT IS IN AN AREA SO IT'S
NOT JUST CHILDREN BEING SERVED
IN SCHOOL OR PARTICIPATING IN A
SERVICE SYSTEM WHICH IS CONSIDER
IT'S CRITICAL TO LINK MULTIPLE
SOURCES MEDICAL AND EDUCATIONAL
PROFESSIONALS WITH SERVICE
PROVIDERS TO TRY TO COVER THE
POPULATION AS BEST AS POSSIBLE
AND THE ABILITY TO DO THAT I
THINK AT THE SITES IS CONTINUING
TO IMPROVE.
BEHIND THE SCENES WE'VE HELPED
DRAFT A TEMPLATE TO BETTER
UTILIZE EDUCATION DATA FOR
PUBLIC HEALTH SURVEILLANCE TO
MEET PRIVACY REQUIREMENTS ON THE
HEALTH AND EDUCATION SIDE.
THERE'S DIFFERENTIAL ACCESS THE
SURVEILLANCE SYSTEMS HAVE AND
THE BIG THING IS WHAT SERVICES
ARE IN THE COMMUNITIES.
THERE HAS ALWAYS BEEN VARIOUS
FROM SITE TO SITE AND VARIATION
FROM WEALTHY AND POORER
NEIGHBORHOODS AND IT'S
REFLECTIVE OF THOSE BEING
IDENTIFIED AND WHAT THE
PRACTICES ARE AND WHAT CHILDREN
MAY OR MAY NOT BE GETTING
SERVED.
I WOULD TAKE THAT AS THE PRIMARY
INTERPRETATION OF WHAT WE'RE
SEEING.
>> DO YOU THINK THERE'S A NEED
FOR AN ALL-TIME DOOR TO DOOR
STUDY TO VALIDATE THESE RATES
AND TAKE OUT THE ISSUE OF
SERVICES AS THE CONFOUNDING
FACTOR?
>> THAT WOULD BE AN INTERESTING
STUDY TO DO, CERTAINLY.
I WOULD PROBABLY BE
EXTRAORDINARILY EXPENSIVE.
IT WOULD NOT FIT THE RUBRIC OF
WHAT PUBLIC HEALTH SURVEILLANCE
THOUGH AND THE MOST USEFUL THING
WOULDN'T BE TO SAY LIKE IS ADDM
GETTING THE RIGHT NUMBERS BUT
COMMUNITY PROVIDERS EFFECTIVELY
IDENTIFYING INDIVIDUALS AND
USING THE DATA TO EXAMINE ISSUES
RELATED TO PRACTICE OR WAYS
THINGS COULD BE IMPROVED.
THAT KIND OF DOOR TO DOOR STUDY
I THINK AS AN ADDITIONAL THING
IF PEOPLE ARE ABLE TO DO THAT,
I'M SURE PEOPLE WOULD FIND IT
INTERESTING BUT AS YOU KNOW, AS
YOU CERTAINLY KNOW THE QUESTIONS
OF WHAT'S THE GOLD STANDARD
WOULD BE TOUGH AS WOULD
DIFFERENTIAL PARTICIPATION.
IT'S A HARD QUESTION.
>> THANKS.
IT WAS MEANT TO BE.
>> GO AHEAD, YETTA.
>> THANKS FOR PRESENTING.
QUICK QUESTION, HOW ARE THE ADDM
NETWO
NETWORK SITES ELECTED BECAUSE I
HAVEN'T SEEN THEM ANYWHERE AND
ARE THERE PLANS TO EXPAND THE
NETWORK.
I KNOW YOU HAVE A LOT OF ON YOUR
PLATE BUT JUST THOUGHT I'D ASK.
>> IT'S A COMPETITIVE PROCESS.
THE ADDM SITES THE LAST CYCLES
ARE FUNDED IN FOUR-YEAR
COOPERATIVE AGREEMENTS.
IT'S AN OPEN COMPETITION.
WE FUND AS MANY SITES AS WE HAVE
RESOURCES TO SUPPORT.
WE'RE ABLE TO DO MORE THAN WE
WOULD HAVE IN THE PAST BASED ON
THE EFFICIENCIES WE'VE BEEN ABLE
TO IMPLEMENT.
WOULD WE EXPAND, YEAH.
WE WOULD LOVE TO BE IN EVERY
STATE.
IT'S JUST THAT THE OPPORTUNITY
AND RESOURCES TO DO THAT BUT WE
WOULD DEFINITELY WANT TO, OF
COURSE.
IT'S MORE ABOUT HOW DO WE
SUPPORT IT.
>> THANK YOU FOR THAT.
>> DINA.
>> THANK YOU FOR YOUR
PRESENTATION, I APPRECIATE IT.
I JUST WANTED TO ASK TWO
QUESTIONS.
THE FIRST ONE IS -- AND I'LL BE
BRIEF.
THE FIRST IS WHEN YOU LOOK AT
THE 16-YEAR-OLDS, IS IT THE SAME
PEOPLE YOU IDENTIFIED PREVIOUSLY
OR A NEW RANDOM SAMPLE?
>> IT'S GOING TO BE CHILDREN
THAT WERE IDENTIFIED PREVIOUSLY
THAT HAD SOME INDICATION THEY
MAY HAVE AUTISM.
COULD BE CHILDREN NEVER
DIAGNOSED AND STILL DON'T AND
MOST THE CHILDREN DID HAVE
AUTISM AND SO IT'S POSSIBLE TO
PICK UP SOME CHILDREN FORMALLY
IDENTIFIED IN THE COMMUNITY
AFTER AGE 8 OR AS TEENAGERS.
IT'S SEEING WHAT'S HAPPENED
SINCE THE GROUP WAS ASCERTAINED
AT AGE 8.
>> AND I'D LOVE TO YOU RESPOND
TO A QUESTION ABOUT SELECTION
BIAS.
GIVEN MANY CHILDREN WHO HAVE
INTELLECTUAL DISABILITIES OR MAY
HAVE CO-OCCURRING DOWN SYNDROME
MAY HAVE BEEN PREVIOUSLY UNDER
DIAGNOSED AND NOT ASSIGNED AN
AUTISM DIAGNOSIS.
MANY AUTISTIC INDIVIDUALS ARE IN
SCHOOLS UNDER 504 PLANS WHERE
THEY DON'T CATEGORIZE THE NATURE
OF THE DISABILITY.
WHAT HAVE YOU DONE TO TRY TO BE
PREVENTIVE ABOUT THOSE ASPECTS
WITH THE BIAS AND WHAT ARE WE
DOING TO IDENTIFY THIS IN
ADULTHOOD BECAUSE MANY DIDN'T
GET IDENTIFIED IN EARLY
CHILDHOOD.
>> THANK YOU.
THOSE ARE GOOD QUESTIONS AND
THINGS WE SPEND EIGHT OF TIME
THINKING ABOUT AND IT'S HARD
BECAUSE WE ARE BASING OUR WORK
USING THE EXISTING SERVICE AND
EDUCATION INFRASTRUCTURE AND IT
VARIES FROM PLACE TO PLACE.
IF CHILDREN MAY NOT BE
IDENTIFIED AS HAVING AUTISM
BECAUSE THEY HAVE 504 PLANS WE
ARE TRYING TO FIND THEM IN OTHER
SYSTEMS.
MAYBE THEY ARE RECEIVING AUTISM
SERVICES THROUGH STATE FUNDED
MEDICAID PROGRAMS.
MAYBE THEY'RE DIAGNOSED AT WITH
AUTISM AT THE DOCTOR'S OFFICE.
WE TRY TO LINK THE SOURCES WE
HAVE AVAILABLE AND SAY WHAT WE
CAN FIND.
IN MATERIALS OF CO-OCCURRING
CONDITIONS, WE DO TRACK WHEN
THOSE ARE DOCUMENTED FOR SELECT
THINGS.
IT'S AN INTERESTING IDEA FOR
ANALYSIS TO LOOK AT WHETHER THE
PROPORTION OF CHILDREN WITH
CERTAIN CONDITIONS LIKE DOWNS
SYNDROME OR OTHER CONDITIONS
THAT WOULD HAVE BEEN ASKCERTAINED
OVER TIME WHETHER THE
REPRESENTATION IS CHANGING AMONG
CHILDREN WITH AUTISM.
AND FOR ADULTS, YEAH, IT'S
ANOTHER REALLY IMPORTANT -- IN
MY MANY YEARS AGO IN WHEN I CAME
TO THE FELLOWSHIP PROGRAM AT CDC
I SAID I WANTED TO LEAD THE
AGENCY IN DOING SOMETHING WITH
ADULTS AND IT'S HARD TO CHANGE
THINGS BUT WE ARE TAKING STEPS
TO START LOOKING AT ADOLESCENTS
AND WE HAVE SOME GREAT
SCIENTISTS WITHIN THE NETWORK
THAT ARE THINKING STRATEGICALLY
BASED ON CURRENT ACTIVITIES CAN
WE LINK FORWARD AFTER HIGH
SCHOOL TO START LOOKING AT
OUTCOMES.
WE ARE INTENSELY INTERESTED IN
DOING MORE WITH THAT BUT AGAIN
IT COMES DOWN TO RESOURCES AND
THE OPPORTUNITIES THAT ARE
AVAILABLE TO US RIGHT NOW.
>> THANKS, LARRY.
LARRY?
>> I'M SORRY.
IT SAID VIDEO STOPPED BY THE
HOST.
MATTHEW, CAN YOU TALK A LITTLE
BIT ABOUT HOW OR IF YOU USE THE
DEPARTMENT OF EDUCATION'S DATA?
>> SO WHEN YOU SAY OSEP DATA, DO
YOU MEAN DATA OSEP HOLDS OR
COVERED BY LIKE POLICIES?
BECAUSE THE WAY THE SURVEILLANCE
SYSTEM WORKS IS IT'S ALL DATA
COLLECTION FROM LIKE STATE OR
LOCAL ENTITIES.
WE HAD A NICE COLLABORATION WITH
YOUR PRIVACY OFFICE THAT HELPED
US OUTLINE A DATA USE AGREEMENT
BETWEEN LOCAL ENTITIES TO
INCORPORATE SPECIAL EDUCATION
DATA TO DO IT IN A MORE FORMAL
WAY THAT MEETS THE LEGAL
REQUIREMENTS.
BUT WE DID NOT GET DATA FROM
LIKE A FEDERAL SOURCE AT THIS
POINT.
>> WELL, OUR DATA ARE PUBLIC.
SO THERE'S NO ISSUES WITH OUR
DATA.
ANY STATE DATA THAT YOU WANT TO
REFERENCE TO, WE HAVE THOSE.
IT'S ON OUR WEBSITE.
I OVERSEE ALL THE DATA.
IT'S ONE OF MY SIDE JOBS.
>> LIKE THE CHILD COUNT DATA?
>> YES.
>> SO THAT'S A SLIGHTLY
DIFFERENT THING IN OUR
SURVEILLANCE WORK WE NEED
IDENTIFIABLE INFORMATION TO MAKE
LINKAGES TO KNOW IF A CHILD IN
SCHOOL IS THE SAME CHILD
RECEIVING LIKE MEDICAID SERVICES
FOR AUTISM.
THEN THAT IDENTIFIABLE
INFORMATION IS DESTROYED AND AS
AN ANALYTIC EXTRACT IT'S
DE-IDENTIFIED AND MESSED UPON
THE CHILD DATA IS GREAT.
WE DO USE IT ON THE -- WE HAVE A
DATA DIGITALIZATION SITE AND
ONCE A YEAR WE TRY TO PUT THE
LATEST CHILD COUNT DATA SO
PEOPLE IN EVERY STATE CAN
COMPARE WHATEVER STATE THEY'RE
IN AND THE SPECIAL EDUCATION
PREVALENCE OF THE AUTISM
CATEGORY VERSUS MEDICAID OR THE
SERVICES OR ADDM IF THERE'S
ADDM.
>> JUST TWO THINGS VERY QUICKLY.
ONE, JUST BE AWARE THAT ANY OF
OUR DATA ABOUT 3 TO 5-YEAR-OLDS
IS USUALLY ODDLY SKEWED IN THE
SENSE THAT STATES ARE ALLOWED TO
REPORT CHILDREN AS
DEVELOPMENTALLY DELAYED OPPOSED
TO PUTTING A DISABILITY CATEGORY
ON THEM.
SO THERE'S A LARGE GROUP THAT
ARE IN FACT IN THAT CATEGORY SO
IT RESULTS IN UNDERSTAND
COUNTING THE SPECIFIC
DISABILITIES.
AND THE OTHER THING IS JUST AN
OFFER THAT IF YOU WANT TO GET
TOGETHER WITH OUR DATA TEAM WHO
ARE PRETTY TERRIFIC, WE'D BE
HAPPY TO FACILITATE ANYTHING WIN
YOUR ANALYSES TO EXPLORE YOUR
DATA.
IT'S AN OFFER.
>> THANK YOU VERY MUCH.
WE HAVE A COUPLE REALLY
EXCELLENT SCIENTISTS ON STAFF
THAT I THINK WILL BE EAGER TO
GET IN TOUCH WITH YOU AND YOUR
TEAM.
SO THANK YOU.
>> YOU'RE WELCOME.
>> WE'LL TAKE TWO MORE
QUESTIONS.
JALEN AND THEN SCOTT.
>> THANK YOU AND THANK YOU FOR
THE EXCELLENT PRESENTATION AND
IT'S NICE TO KNOW WHAT'S COMING
UP THROUGH THE PIPELINE.
I STILL HAVE QUESTIONS WITH THE
CDC AND LOOKING AT ADULT
STATISTICS AND THERE'S BEEN
EXTRAPOLATIONS AND THINGS AND I
WAS EAGER TO FIND YOUR DATA HAD
BEEN HIDDEN IN THE MINUTE OF THE
COVID EPIDEMIC BECAUSE YOU
COULDN'T BRING THINGS FORWARD
WHEN YOU HAD TO WORK ON COVID
THINGS SO IT'S HELPFUL
INFORMATION TO US.
I DO HAVE A 32-YEAR-OLD SON WHO
IS KIND OF ON THAT EDGE OF THE
TSUNAMI WAVE.
BUT WE ARE SEEING SO MUCH MORE
WITHIN OUR CIRCLES OF WORKING
WITH ADULTS WITH AUTISM THAT WE
DON'T HAVE REALLY ACCURATE DATA
AND I DON'T KNOW HOW ONE GOES IN
TO DO THAT TO FIND THINGS
BECAUSE THERE ISN'T THE SCHOOL.
THERE'S HIPAA AND ALL SORTS OF
THINGS.
SOME PEOPLE HAVE NOT BEEN
DIAGNOSED BEFORE BUT IT'S HARD
FOR ADVOCACY TO GO IN AND ASK
STATES TO HELP PUT THINGS
TOGETHER FOR ADULTS WITHOUT
HAVING THAT INFORMATION ABOUT
HOW MANY ADULTS OR WHAT THE
PREVALENCE IS.
I THINK THERE'S A HUGE CHALLENGE
THERE.
AND I THINK IT'S VERY MUCH A
PUBLIC HEALTH CRISIS BECAUSE
EIGHT OF THE THINGS WE'RE SEEING
AND A LOT OF THE REPORTS AND
IT'S INTERESTING WITH SOCIAL
SECURITY YOU HAVE TO BE
IDENTIFIED BEFORE 22 BUT THEN
THERE'S ADULTS.
IS THERE ANYTHING STANDING IN
C.D.C.'S WAY TO STEPPING FORWARD
TO DOING MORE RESEARCH ON
ADULTS?
>> I THINK THAT'S AN INTERESTING
WAY OF FRAMING THAT QUESTION AND
THERE'S BEEN FOCUS ON CHILDREN
AND BOTH IN OUR SURVEILLANCE
WORK AND IN THE RESEARCH PROGRAM
AT CDC THE STUDIES TO EXPLORE
EARLY DEVELOPMENT WE'RE MOVING
UP THE AGE RANGE TO ADOLESCENCE
AND CERTAINLY FOR THE SEED
RESEARCH PROJECT I THINK SOME OF
THE COHORT MAY BE STARTING TO
REACH ADULTHOOD BUT IT'S TOUGH
TO WAIT FOR LONGITUDINAL DATA IN
REAL TIME.
YOU'RE ACTIVITIES ARE DESCRIBED
THROUGH A CONGRESSIONAL THERE'S
LANGUAGE ABOUT WHAT WE WILL DO.
AND I THINK RESEARCH WOULD TAKE
OPPORTUNITY TO EXPAND TO ADULTS
AND HAVE MORE PROGRAMS IN THAT.
>> THAT'S HELPFUL INFORMATION
RIGHT THERE.
THANK YOU VERY MUCH.
>> SCOTT.
>> AND WE ARE BEHIND THE CURVE
IN COMPARISON TO SAY THE U.K.
AND AUSTRALIA FOCUSSED MORE ON
THE ADULT, ADOLESCENT FOCUS.
DO WE HAVE THE POSSIBILITIES AND
I DON'T KNOW IF IT WILL HELP
DRIVE THE BALL FORWARD AND
COLLABORATING MAYBE COULD YOU
POTENTIALLY BE CONNECTING MORE
WITH YOUR INTERNATIONAL
COUNTERPARTS AND KINGDOM IN
AUSTRALIA TO LEARN WHAT THEY'VE
BEEN DOING AND MONITORING ADULT
S AND LOOK AT WHERE THE CURRENT
STATE AS FAR AS THE LIVED
EXPERIENCES AND THE CHALLENGES
FOLKS HAVE AND HAVE MORE
CONCRETE DATA RATHER THAN
ESTIMATES FOR AUTISTIC ADULTS
THOUGH THE ESTIMATES WERE
HELPFUL AND THE SECOND PART IS
ARE THERE PROMISING AND BEST
PRACTICES IN THE ADDM NETWORK
RIGHT NOW THAT COULD BE HELPFUL
YOU THINK COULD BE APPLIED FOR
HAVING NEEDS ASSESSMENTS FOR A
PLETHORA OF FOCUSES FOR ADULTS
AND MONITORING AND TRACKING
WHERE CHALLENGES LIE AND WHAT
THE CURRENT STATE IN TERMS OF
THE CONTENTS FOR THE POPULATION
AS FOLKS AGE INTO AND THROUGH
ADULT LIFE LOOKS LIKE.
IF SO CAN YOU SHARE ANY OF THOSE
SPECIFIC PROMISING BEST
PRACTICES THAT CAN BE APPLIED TO
THAT ADULT FOCUS?
>> THANK YOU FOR YOUR QUESTION
QUESTIONS AND COMMENTS.
THE IDEA OF LOOKING AT WHAT
INTERNATIONAL GROUPS ARE DOING,
IS EXCELLENT.
AS YOU WERE SAYING THAT WHAT
CAME TO MIND IS CEREBRAL PALSY
SURVEILLANCE AND SCANDINAVIAN
COUNTRIES AND U.K. AND AUSTRALIA
ARE LEADERS IN THERE.
BEING MORE FAMILIAR WITH THE
POPULATION LEVEL EFFORTS IN
THOSE COUNTRY AND MAYBE
CONNECTING WITH THEM COULD BE
VALUABLE AND INFORMATIVE FOR
FUTURE WORK.
IN TERMS OF OUR WORK INFORMING
NEEDS ASSESSMENTS, I THINK THE
GOAL OF PUBLIC HEALTH
SURVEILLANCE IS DONE AT A
POPULATION LEVEL THOUGH AND IT
MIGHT SUGGEST CLUES IN
DISPARITIES OR THINGS THAT SEEM
TO BE HAPPENING OR AREN'T
HAPPENING THAT WOULD WARRANT
FURTHER INVESTIGATION AND
CONVERSATION AT LEAST.
BUT SEED I KNOW THEY PIVOTED IN
THE LAST YEAR AND A HALF OR SO
TO DO A COVID IMPACT STUDY TO
LEARN HOW FAMILIES ARE BEING
AFFECTED BY THE PANDEMIC.
I AGREE.
THERE'S MORE WE COULD DO TO
THINK ABOUT HOW BEST TO SERVE
PEOPLE AND UNDERSTAND WHAT THEIR
NEEDS ARE CURRENTLY.
>> JUST TO CLARIFY, I THINK
SCOTT WAS REFERRING TO
INTERNATIONAL STUDIES LOOKING AT
PREVALENCE IN REGARD TO AUTISTIC
ADULTS.
THERE'S RESEARCH ABOUT THAT JUST
TO CLARIFY.
THANK YOU.
>> BRIEFLY, DR. GORDON, I WANTED
TO CLEAR CLARIFY I WAS
REFERRING UNITED KINGDOM DID A
NEEDS ASSESSMENT CROSS TE
COUNTRY AND EXPANDED ON THAT AND
ENHANCED THAT AT THE LOCAL LEVEL
AND UP TO THE NATIONAL LEVEL AND
THAT'S REALLY DRIVEN A LOT OF
WHAT THEY'VE BEEN DOING FOR
THEIR SERVICE SYSTEM TO BETTER
MEET THE NEEDS OF AUTISTIC
ADULTS AND THE GAPS WE POINT OUT
IN THE UNITED STATES FOR
EMPLOYMENT AND HAVE MORE DATA
FOR NEEDS ASSESSMENT AND
MONITORING AND THERE'S
SIMILARITIES IN THE SYSTEM.
THAT'S WHY I THINK WOULD BE A
GREATER BENEFIT THAN CONNECTING
WITH FOLKS INTERNATIONALLY
BECAUSE THOSE FOLKS HAVE
FOCUSSED ON SPECIFICALLY
AUTISTIC ADULTS IS A NATURAL
EXTENSION OF WHAT YOU'VE DONE
WITH ADDM AND MOVING INTO THE
SHIFT AROUND ADOLESCENCE LOOKING
AT OLDER CHILDREN AS THEY AGE
INTO ADOLESCENT LIFE.
>> I APPRECIATE THE POINT AND
THANKS AGAIN DR. MAENNER FOR AN
EXCELLENT PRESENTATION AND
ENTERTAINING THESE THOUGHTS.
WE'LL HAVE AN OPPORTUNITY TO
REVISIT THE ISSUE AROUND
QUANTIFYING NEEDS FOR ADULTS AT
A LATER TIME.
WE'RE NOW GOING TO MOVE ON.
WE'RE ABOUT 10 MINUTES LATE AND
WE WERE DO TO TAKE A 15 MINUTE
BREAK SO I THINK WE DESPERATELY
NEED THIS ONE.
WE'LL TAKE 10 MINUTES NOW.
WE'LL START THE NEXT SESSION
FIVE MINUTES LATE SO IT'S 2:40.
SEE YOU BACK AT 2:50.
EVERYONE SHAKE A LEG DO WHAT YOU
NEED TO RESET YOURSELF.
>> HELLO, SUSAN.
READY TO START UP AGAIN?
>> YES.
>> FROM THE NEXT SEGMENT WE'LL
HAVE FROM DR. CATHY LORD THE
GEORGE TARJAN DISTINGUISHED
PROFESSOR AT UCLA DAVID GEFFEN
SCHOOL OF MEDICINE AND DR. LORD
WAS A MEMBER OF THE LANCET
COMMISSION ABOUT THE REPORT WE
HEARD A LITTLE BIT ABOUT SO FAR
AND PLEASED TO WELCOME HER HERE
TODAY TO UPDATE THIS COMMITTEE
AND ALL THE OBSERVERS OVER THE
INTERNET REGARDING THE CONTENT
FOR THAT REPORT AND IT'S MEANING
FOR THE FUTURE OF HEALTH CARE
AND RESEARCH.
>> I NEED PERMISSION TO SHARE MY
SCREEN.
HELLO, EVERYBODY.
I'M BEEN SITTING IN SINCE 7:00
THIS MORNING AND SO I'VE BEEN
VERY IMPRESSED WITH THE LEVEL OF
DISCUSSION AND PASSION AND
RESTRAINT PEOPLE HAVE EXERCISED.
THIS LIST JUST SHOWS YOU ALL THE
AUTHORS OF THE LANCET REPORT IT
TITLED IT AN INTERNATIONAL
PERSPECTIVE --
>> I'M SORRY, WE'RE NOT SEEING
YOUR SLIDES.
>> OH NO.
OKAY.
LET'S SEE WHY NOT.
>> I ONLY SEE YOUR VIDEO NOT
THAT YOU'RE SHARING ANYTHING.
>> THEY'VE BLOCKED -- MAYBE
ANTHONY SHOULD GO AHEAD AND
SHARE THEM.
I CAN SEE THEM BUT I CAN'T EVEN
GET TO --
>> THEN CONTROLS OVER TO YOU.
>> THEY WERE THERE A MOMENT.
>> SO LET'S SEE HOW I GET OUT OF
THEM TO SEE --
>> THERE YOU GO.
WE CAN SEE THE SLIDES.
>> ALL RIGHT.
I WILL GO WITH THOSE SLIDES.
LET ME MAKE THIS BIGGER.
>> WE CAN SEE IT JUST FINE.
>> MINE IS TINY BUT IT'S OKAY.
WHAT I WANTED TO DO IS TELL YOU
A LITTLE BIT ABOUT THE PROCESS
SO I HAVE AN IDEA WHERE THESE
COME FROM.
I WAS ASKED TO SHARE -- CHAIR
THIS COMMISSION FROM LANCET AND
ANTHONY VOLUNTEERED TO CO-CHAIR
WITH ME WHICH IS GREAT AND TONY
AND I AND LANCET TRIED TO PUT
TOGETHER A COMMITTEE THAT
REFLECTED A RANGE OF
DISCIPLINES, COUNTRIES,
ETHNICITIES AND PERSPECTIVES.
THE GROUP ENDED UP COMING FROM
SIX CONTINENTS AND 13 DIFFERENT
DISCIPLINES AND HAD THREE IN
PERSON MEETINGS INCLUDING TWO
CONFERENCES THAT FOLLOWED
MEETINGS AT UCLA AND ONE IN
LONDON.
THE GROUP WHICH OVERALL HAD 32
MEMBERS DIVIDED INTO COMMITTEES
AND THEY PRESENTED THE OUTLINES
OF THE SECOND MEETING AND
POSSIBLE RECOMMENDATIONS AND
EVERYONE TALKED ABOUT THEM AND
WROTE THINGS BACK AND FORTH WITH
THE WHOLE GROUP AND THE NEXT
GROUP AND PRODUCED A FORMAL
FIRST DRAFT WHICH WAS THEN
REVIEWED BY REVIEWERS OUTSIDE
THE COMMITTEE.
SO WE THEN MORE REVISIONS AND
REVIEWS.
WE HAD TWO ROUNDS OF LANCET
EDITS BY PEOPLE WORKING FOR
LANCET AND THERE WAS A FINAL
LAUNCH AND PUBLICATION IN
DECEMBER 2021.
THIS WAS RAISED BY AUTISM
ADVOCACY ORGANIZATIONS AND NOT
FOR PROFIT FAMILY FOUNDATIONS
AND UCLA SUPPLIED SOME MONEY AND
NONE OF US WERE PAID FOR DOING
THIS AT ALL.
JUST TWO SIDE NOTES, HARD COPIES
WILL BE AVAILABLE IN THE SPRING.
I THINK THEY MADE -- I CAN'T
REMEMBER HOW MANY BUT LANCET IS
GOING TO PRODUCE SOME HARD
COPIES.
SO IF YOU'RE INTERESTED, LET ME
KNOW AND I'VE ALSO PROMISED TO
WRITE A PLAIN LANGUAGE VERSION
WHICH WILL GET DONE AS SOON AS I
CAN GET IT DONE AND WE'LL HAVE
OTHER PEOPLE REVIEW IT.
THE FIRST POINT IS THIS IS AN
INTERNATIONAL GROUP AND THE
FIRST MAIN THING PEOPLE WANTED
TO SAY AND IT'S HARD RIGHT NOW
WITH SO MUCH GOING ON CERTAINLY
IN THE UNITED STATES AND ALL
OVER THE WORLD, BUT THERE IS
SOME URGENCY IN ADDRESSING WAYS
TO IMPROVE THE LIVES OF ALL THE
PEOPLE WITH AUTISM IN THE WORLD
AND THEIR FAMILIES.
AND I THINK -- I'M PREACHING TO
THE CHOIR TALKING TO YOU ALL BUT
I THINK WHEN WE LOOK AT, FOR
EXAMPLE, HOW MUCH OF THE MONEY
RESEARCH MONEY IS SPENT, IT'S
PROVIDING VALUABLE INFORMATION
BUT NOT HAVING MUCH DIRECT
EFFECT ON LIVES OF PEOPLE WITH
AUTISM AND THEIR FAMILIES.
I THINK THE SECOND POINT IS
THERE IS A FAIR AMOUNT OF
EVIDENCE AND SCIENTIFIC DATA
THAT WE CAN USE BUT WE NEED TO
HAVE STRATEGIES FOR HOW DO WE
USE THAT DATA TO BETTER SEE WHAT
WE CAN DO TO SUPPORT SYSTEMS AND
INTERVENTIONS AND FOR WHOM, WHEN
AND WITH WHAT INTENSITY AS WELL
AS HOW.
PART IS BECAUSE AUTISM IS SO
HETEROGENEOUS AND GROUP DATA
ONLY GETS OUT SO FAR AND GOES
BACK TO MATTHEW'S POINT ABOUT
MEDIAN.
WE ACKNOWLEDGE AUTISM IS A
NEUROBIOLOGICAL CONDITION THAT
BASIC AND TRANSLATIONAL SCIENCE
EFFORTS ARE VERY IMPORTANT BUT I
THINK THE SIMPLE ANSWERS 50
YEARS AGO WE THOUGHT WE'D MIGHT
GET IF AUTISM WAS PRODUCED BY
THREE GENES AND CAN FIGURE WHAT
THOSE AND EVERYONE WITH THOSE
GENES COULD NOT EAT BROCCOLI HAS
NOT HAPPENED AND WE WANT TO CALL
ATTENTION TO THE FACT THE
CLINICAL CHALLENGES AUTISM RAISE
FOR SOCIETY AND AUTISTIC PEOPLE
AND THEIR FAMILIES ARE UNLIKELY
TO BE SOLVED BY BIO MEDICAL
SOLUTIONS FOR MOST PEOPLE IN THE
NEAR FUTURE.
OUR GROUP DECIDED TO FOCUS ON
RECOMMENDATIONS FOR THINGS THAT
IF PUT INTO EFFECT COULD MAKE A
DIFFERENCE IN THE NEXT FIVE
YEARS.
FOR THAT, WE WANTED TO FOCUS ON
TARGETED RESEARCH THAT CAN
CHANGE LIVES NOW BY IMPROVING
MENTAL AND PHYSICAL HEALTH OF
PEOPLE WITH AUTISM.
SO NOT NECESSARILY CHANGING CORE
FEATURES BUT TRYING TO FIGURE
OUT WHAT MAKES THE DIFFERENCE IN
STRENGTHENING SUPPORT SYSTEMS
AND AGAIN IT'S NOT LIKE AS
YOU'VE TALKED ABOUT ALL MORNING,
IT'S NOT LIKE NO ONE DOES THIS
ALREADY BUT TO DO THIS ON A
LARGER AND MORE FOCUSSED SCALE.
THAT TAKES INTO ACCOUNT
IMMEDIATE AND LONG-TERM AFFECTS
ON THE QUALITY OF LIFE FOR
AUTISTIC PEOPLE AND THEIR
FAMILIES AND I THINK BACK TO THE
COMMENT OF ONE MEMBERS WE'RE
FOCUSSING ON AUTISTIC PEOPLE BUT
WITH AUTISTIC PEOPLE COME
FAMILIES AND A VERY HIGH
PROPORTION OF AUTISTIC PEOPLE
ARE STILL VERY INVOLVED IN THEIR
FAMILIES AND WE DON'T WANT TO
FORGET THAT.
WE WANT TO FOCUS ON RESEARCH
THAT HAS IMMEDIATE IMPROVEMENTS
AND HOW ON EARTH DO WE GET THE
GOVERNMENT AND FUNDING AGENCIES
TO ACTUALLY DO THIS?
BECAUSE THERE'S A VERY
COMPLICATED SYSTEM AS WE WELL
KNOW THROUGH FEDERAL FUNDING NOT
JUST NIH BUT IN THE U.K. AND
AUSTRALIA AND SOUTH AMERICA.
THIS IS THE IDEA AUTISM
MANIFESTS DIFFERENTLY BETWEEN
INDIVIDUALS AND THERE'S HUGE
CHANGES WHICH YOU DON'T NEED ME
TO TALK ABOUT RIGHT NOW.
YOU KNOW BUT ALSO AUTISM
MANIFESTS DIFFERENTLY WITHIN
INDIVIDUALS ACROSS THE LIFE
SPAN.
IT'S A DEVELOPMENTAL CONDITION
AND PEOPLE NEED DIFFERENT
SUPPORTS AND CAN BENEFIT FROM
DIFFERENT INTERVENTIONS AT
DIFFERENT POINTS IN THEIR LIVES.
THE REALITY IS WE HAVE SEPARATE
STUDIES THAT ADDRESS, FOR
EXAMPLE, ADULTS AND KIDS AND NOT
A LOT OF INFORMATION OF WHAT
MIGHT WORK WITH A 2-YEAR-OLD OR
5-YEAR-OLD.
WE PROPOSE THE TERM PROFOUND
AUTISM, WHICH I'LL COME BACK TO.
HERE WE WERE INTO THE TRYING TO
CREATE CONTROVERSY BUT WE WERE
CONCERNED THAT SOMETIMES THE
NEEDS OF AUTISTIC CHILDREN AND
ADULTS WITH SEVERE INTELLECTUAL
AND COMMUNICATION DISABILITIES
WHO CAN'T SPEAK FOR THEMSELVES
AND NEED EXTENSIVE CARE
THROUGHOUT THEIR LIVES ARE NOT
ADDRESSED AS OFTEN AS WE WOULD
LIKE AND AS CAREFULLY.
WE ALSO WANT TO RECOGNIZE THOUGH
THAT MANY AUTISTIC PEOPLE HAVE
STRENGTHS THAT CONTRIBUTE TO
EVERY STEP OF SOCIETY AND THERE
IS AN IMPORTANCE TO VALUE AUTISM
AND NEURAL DIVERSITY WHICH
BENEFIT EVERYBODY.
BASICALLY WHAT IT SAYS IS LOTS
OF DIFFERENT ISSUES INTERACT
ACROSS DEVELOPMENT TO AFFECT
PEOPLE WITH AUTISM AND ACTUALLY
THIS IS PARTLY TRUE FOR
EVERYBODY.
BUT IT'S PARTICULARLY IMPORTANT
IN AUTISM BECAUSE IF YOU HAVE,
FOR EXAMPLE, UNUSUAL EXPERIENCES
AND YOU HAVE A BIOLOGICAL RISK
FOR HAVING PARTICULAR
DIFFICULTIES, THOSE EXPERIENCES
MAY RESULT IN GREATER
DIFFICULTIES THAN ARE REALLY
NECESSARY.
SO THE IDEA IS THAT AS YOU MOVE
FROM LEFT TO RIGHT AND ACROSS
TIME AND HAVE DIFFERENT
ENVIRONMENT AND EXPERIENCE
CAUSING DIFFERENT KINDS OF
DIFFICULTIES WHICH MIGHT INCLUDE
FOR EXAMPLE RESTRICTED ACCESS TO
JOBS OR LIMITED ACCESS TO DOING
SOMETHING, VOCATIONAL OR LEISURE
SKILLS FOR INCREASED RISK OF
OTHER KINDS OF MENTAL HEALTH
DIFFICULTIES.
OUR POINT WAS CHANGE IS
POSSIBLE.
I THINK NO ONE I THINK IN THIS
GROUP WOULD DISAGREE WITH ME
THAT OFTEN WE TAKE ABOUT AUTISM
AS A LIFE-LONG DISORDER BUT
SOMETIMES PEOPLE THINK THAT
MEANS NOTHING CAN GET BETTER AND
THAT IS JUST NOT TRUE.
WE HAVE A LOT OF EVIDENCE THERE
ARE WAYS OF MAKING THINGS BETTER
IN TERMS OF BOTH THE ENVIRONMENT
AND IN TERMS OF GIVING PEOPLE
SKILLS AND STRATEGIES THAT CAN
HELP THEM ADAPT TO THE
ENVIRONMENT AS WELL AS CHANGING
THE ENVIRONMENT.
THIS IS JUST A SUMMARY BY A
PAPER MANY OF YOU WILL HAVE SEEN
BY SAND BANK BUT THERE ARE LOTS
OF DATA PARTICULARLY ABOUT EARLY
INTERVENTIONS WITH YOUNG
CHILDREN.
AND SOME OF THESE INTERVENTIONS
HAVE EVEN BEEN ATTEMPTED IN
ORGANIZED RANDOMIZED CONTROL
TRIALS IN LOWER MIDDLE CLASS
COUNTRIES.
THERE'S ALSO PRETTY GOOD
AGREEMENT ABOUT HELPFUL
INTERVENTION STRATEGY.
LIKE SAM ODOM'S LIST OF THE
THINGS YOU CAN DO BUT LESS
AGREEMENT ON WHAT WORKS WHICH IS
REALLY INTERESTING.
AND EVERY DAY THERE'S DIAGNOSES
IN ADOLESCENTS AND ADULTS AND
ANYTHING TO THE RIGHT OF THE
LINE MEANS A SIGNIFICANTI ISISM --
SIGNIFICANT IMPROVEMENT OVER THE
CONTROL GROUP AND MOST THE TIMES
THE CONTROL GROUPS ARE TREATMENT
AS USUAL.
IT'S NOT A DIFFERENT TREATMENT.
THOUGH ON THE WHOLE, WHAT WE
DON'T KNOW IS WE DON'T KNOW MUCH
ABOUT COMPARING TREATMENTS AND
PARTICULARLY WE DON'T KNOW ABOUT
MUCH ABOUT COMPARING TREATMENTS
FOR DIFFERENT POPULATION
AUTHORIZE SAME POPULATION AT A
DIFFERENT TIME.
IF WE KNEW THIS WE COULD BE MORE
EFFICIENT IN CREATING CULTURALLY
APPROPRIATE ADAPTATIONS AND
FIGURING OUT THE NEEDS OF
DIFFERENT COMMUNITIES.
IT'S NOT THAT WE WANTED TO HAVE
EVERYTHING BE THE SAME
EVERYWHERE, BUT IT'S ALSO THE
CASE, IF WE START OVER, FOR
EXAMPLE, THERE'S BEEN REPEATED
PUSH TO TRY TO COME UP WITH A
SINGLE QUESTIONNAIRE THAT'S
GOING TO DIAGNOSE AUTISM AT ANY
AGE, ANY LEVEL ANYWHERE IN THE
WORLD USED BY ANY PERSON AND
THERE'S ABSOLUTELY NO DATA THAT
SUGGESTS THAT WILL WORK EVEN
WITHIN THE U.S., U.K., SCANNED
KNAVE YEAH, WHEREVER.
-- SCANDINAVIA, WHEREVER.
WE SHOULD BE ABLE TO LEARN FROM
THAT AND SAY WHAT DOES WORK.
IT'S ALSO IMPORTANT THAT PEOPLE
WITH OTHER OF INTELLECTUAL
DISABILITIES OR PEOPLE WITH
MENTAL HEALTH PROBLEMS WE CAN
USE THE INFORMATION FROM THAT.
THERE'S THE QUESTION OF HOW DO
YOU PERSONALIZE CARE IN AUTISM
AND WE PROPOSED THE STEP CARE
PERSONALIZED HEALTH APPROACH.
AND I THINK ONE OF THE IMPORTANT
THINGS IS THERE'S BEEN STEP CARE
MODELS FOR YEARS BUT MOST OF
THESE ARE CREATED FROM THE POINT
OF VIEW OF THE PROVIDER FROM
HEALTH SYSTEMS.
HOW CAN WE CHEAPLY PROVIDE
SERVICES FOR PEOPLE WHO MAY BE
DEPRESSED.
LET'S FIRST HAVE THEM WATCH A
WEBINAR AND IF THEY'RE STILL
DEPRESSED LET'S HAVE THEM GET A
ZOOM SESSION AND THEN IF THEY'RE
DEPRESSED, MAYBE WE'LL SEE THEM
IN PERSON.
THIS IS DONE VERY MUCH FROM THE
COST EFFECTIVENESS OF THE
PROVIDER, NOT FROM THE
INDIVIDUAL.
IT'S ALSO IMPORTANT TO REMEMBER
MOST THE TIME WHEN PEOPLE TALK
ABOUT PRECISION MEDICINE OR
PERSONALIZED MEDICINE THEY'RE
NOT EVEN TALKING ABOUT WHOLE
PEOPLE BUT DOING GENETICS ON
SOMEBODY'S TUMOR AND THEN COMING
UP WITH AN APPROPRIATE MEDICAL
TREATMENT THAT ADDRESSES THAT
FORM OF CANCER NOT THAT PERSON.
AUTISM IS NOT A DISEASE, AS IT A
CONDITION THAT CAN CAUSE
IMPAIRMENT IN DAILY LIVING BUT
WITH A HUGE RANGE IN DEGREE AND
THE INDIVIDUAL PROFILE OF
CHILDREN, ADOLESCENTS AND ADULTS
AND THEIR FAMILY RESOURCES AND
THEIR COMMUNITY AND WHERE
THEY'RE FROM.
SO THE IDEA HERE WAS TO SHIFT
TRADITIONAL STEP CARE
PERSPECTIVE TO MOVE TO NOT JUST
TAKING INTO ACCOUNT HOW CHEAPLY
CAN THIS BE DONE FROM A
HOSPITAL'S POINT OF VIEW BUT
WHAT ARE THE PREFERENCES OF THE
INDIVIDUALS LOOKING FOR HELP.
WHAT IS THE BURDEN ON THE
INDIVIDUAL AND THE FAMILY AND
HOW CAN WE PERSONALIZE WHAT
WE'RE DOING AROUND INDIVIDUAL
AND FAMILY NEEDS DURING
CHALLENGES.
I THINK THE FIRST THING THAT
MEANS IS YOU NEED TO KNOW THAT
INFORMATION.
IT'S NOT SOMETHING THAT'S GOING
TO COME JUST WITH A DIAGNOSIS OF
AUTISM.
IT TELLS YOU VERY LITTLE ABOUT
THE SUPPORT AND TREATMENT
SOMEONE NEEDS GIVEN THE RANGE OF
KILLS -- SKILLS AND NEEDS A
PERSON NEEDS AND ONE OF THE
THINGS THAT BECAME APPARENT EVEN
FROM EUROPEAN COUNTRIES THAT
HAVE GOOD INITIAL ASSESSMENT
PROTOCOLS, IS THAT OFTEN KIDS
ARE SEEN ONCE AND GET A
DIAGNOSIS AND THAT'S IT AND THE
IDEA OF THE STEP CARE HEALTH
MODEL START WITH THE LEFT AND
CONSIDER WHAT ARE THE CONCERNS
OF THE FAMILY OR INDIVIDUAL IF
WE'RE TALKING ABOUT AN ADULT OR
ADOLESCENT OR OLDER CHILD.
WHAT IS IT WE WANT TO MAKE
BETTER.
THEN MOVE TO LOOKING AT
INDIVIDUAL FACTORS LIKE SAFETY,
AGE, PREFERENCES, SEVERITY OF
SYMPTOMS AND THEN ALSO BASIC
INFORMATION THAT WE KNOW DOES
MAKE A DIFFERENCE LIKE COGNITIVE
AND LANGUAGE SKILLS AND WHETHER
SOMEONE'S HAVING PROBLEMS AT
SCHOOL OR WORK OR HOME OR
EVERYTHING AND THEN STRENGTHS.
WE ALSO NEED TO CONSIDER FAMILY
FACTORS FOR MANY PEOPLE NOT AN
ADULT WHO IS COMPLETELY
INDEPENDENT IF THEY DON'T WANT
IT, BUT FOR PEOPLE THAT ARE VERY
INVOLVED IN THEIR FAMILIES AND
THIS INCLUDES PARTICULARLY
IMPORTANT ACROSS OTHER COUNTRIES
BUT WE TALKED ABOUT IT HERE
TODAY TOO ACCEPTANCE.
ARE PEOPLE ASHAMED OR
EMBARRASSED?
IS THERE STIGMA AND ALSO WHAT IS
GOING ON WITH THE REST OF THE
FAMILIES' LIVES?
THEN WE WANT TO MOVE TO THE IDEA
OF WE WANT TO CONSIDER FACTORS
THAT AFFECT FAMILIES AND
INDIVIDUALS AND SOMETHING HOME
BASED MAY BE EASIER FOR SOME
FAMILIES BUT DIFFICULT WITH A
FAMILY LIVING WITH A NUMBER OF
KIDS IN A TINY NEW YORK
APARTMENT.
SCHEDULES MAKE A DIFFERENCE AND
IF ADULTS ARE WORKING MAY NOT
WANT TO TAKE TIME OFF THEIR WORK
TO COME TALK TO ME AND FIGURING
OUT HOW TO SCHEDULE IT AND WHAT
CAN BE DONE AT SCHOOL.
A SIGNIFICANT QUESTION IS HOW
MUCH CAREGIVER EFFORT DO THINGS
TAKE AND IN SOME CASES
CAREGIVERS ARE DYING TO JUMP IN
AND WORK WITH THEIR KIDS AND IN
OTHER CASES CAN'T OR DON'T WANT
TO.
CONSIDERING THOSE FACTORS FROM
THE START IN TERMS OF
DETERMINING CARE.
JUST TO GIVE YOU A QUICK
EXAMPLE, WHEN WE DO THINGS FOR A
FAMILY WITH A MINIMALLY VERBAL
CHILD IN A MIDDLE CLASS FAMILY
SAY IN ARGENTINA, WE'LL START BY
TRYING TO FIGURE OUT SAFETY
ISSUES.
WANDERING AND CONCERNS ABOUT THE
CHILD ELOPING MAY BE A HIGH
PRIORITY.
WE'LL GO ON TO TRY TO FIGURE OUT
WHAT ARE THE SEVERITY OF THIS
CHILD'S SYMPTOMS, WHAT CAN THE
CHILD UNDERSTAND IN TERMS OF
LANGUAGE.
HOW DOES THIS CHILD COMMUNICATE
AND WHERE THE PROBLEMS.
IF THE CHILD IS DOING GREAT AT
HOME BUT WE'RE STRUGGLING TO
FIND A SCHOOL, THAT'S A
PRIORITY.
AND THEN WE'LL DETERMINE WHAT
ARE THE THINGS MOST EASILY
ACCEPTABLE NOT JUST FOR THE
MEDICAL OR SCHOOL SYSTEM BUT FOR
THE FAMILY.
WE WOULD DO SOMETHING QUITE
DIFFERENT WITH THE 15-YEAR-OLD
WITH EXTREME SOCIAL ANXIETY IN A
HIGH-INCOME COUNTRY.
SO HERE WE WOULD LOOK SIMILAR
THINGS BUT IN THIS CASE SAFETY
MAY NOT BE AN ISSUE.
HERE WE REALLY WANT TO KNOW IF
THE FAMILY IS SAYING GIVE US
MEDICINE.
WE'RE NOT DOING SOMETHING
BEHAVIORAL.
WHAT'S THE ADOLESCENT SAYING AND
WHAT DOES HE OR SHE WANT?
HOW MUCH IS THE YOUNG ADOLESCENT
WANT TO PARTICIPATE?
IS THIS PERSON REALLY DYING TO
MAKE FRIENDS OR ARE THEY LOOKING
FOR SUPPORT IN OTHER AREAS?
AND HOW CAN WE SUPPORT THIS
PARTICULAR ADOLESCENT?
IF WE ARE GOING TO DO THIS WE
NEED IT KNOW ABOUT THE THERAPY
AND GROUP DATA ARE JUST AT THE
BEGINNING.
WE NEED TO KNOW WHAT
INTERVENTIONS ARE EFFECTIVE FOR
WHOM, WHEN AND WHAT INTENSITY
AND FOR HOW LONG.
IDEALLY WE WOULD FIND OUT WHY
AND I THINK THAT WAS THE
GLORIOUS MISSION OF OUR DOCTOR
AND BIOLOGICAL MECHANISMS.
BUT IN THE MEANTIME WHILE WE'RE
TRYING TO FIGURE THAT OUT WE
NEED TO KNOW PRACTICAL THINGS.
IS AN HOUR A WEEK OF SPEECH
THERAPY PLENTY OR MEANINGLESS OR
DOES IT NEED TO BE MORE?
ARE THERE KIDS THAT REALLY NEED
30 OR 40 HOURS A WEEK OF AVA OR
KIDS THAT WOULD BENEFIT MUCH
MORE FROM SOMETHING ELSE?
THE 16 WEEKS OF PEERS.
CAN WE BUILD ON THAT?
AND THIS REQUIRES PERSONALIZED
KNOWLEDGE ABOUT A FAMILY OR
RESOURCES AND CMS A COUPLE WEEKS
AGO ANNOUNCED THEY WERE NOT
GOING TO LET ANYBODY DO
TELEHEALTH ON A FIRST VISIT.
THEY RESCINDED THAT ORDER BUT OF
COURSE OUR HOSPITAL INITIALLY
JUMPED ON IT AND SAID THAT WAS
TRUE FOR EVERYBODY EXCEPT
MEDICARE AND WHY?
ELDERLY PEOPLE GET HIGHER
PRIORITY FOR ME THAN PEOPLE WITH
DISABILITIES.
I DON'T GET IT.
THAT WAS THE IMMEDIATE
REPRESENTATION AV HOSPITAL AND
WOULD BE EASIER IF WE ALL STICK
TO THESE RESULTS THOUGH THEY'RE
IN DIRECT CONTRAST TO THE FACT
THAT IN SOME CASES, NOT ALL, WE
CAN DO TELETO ORGANIZE SOMEBODY
FOR AN ASSESSMENT OR TREATMENT
THAT'S MORE EFFECTIVE THAN
MAKING PEOPLE COME IN AND YET
THIS WAS COMPLETELY IGNORED
UNTIL WE HAD THE RESURGENCE OF
COVID.
WE ALSO DO NEED TO KNOW MORE
ABOUT WHAT'S FINANCIALLY
FEASIBLE BECAUSE THERE ARE KIDS
AND I THINK LESS SO ADULTS, WHO
GET PROBABLY MORE TREATMENT THAN
THEY REALLY NEED AND COULD USE
SUPPORT IN OTHER AREAS FOR
EXAMPLE.
IN HIGH INCOME COUNTRIES PUBLIC
SCHOOLS CAN'T EXCLUDE KIDS WITH
DISABILITIES.
SCHOOLS ARE OFTEN UNDER FUNDED
AND THERE'S A PROBLEM WITH
WORKFORCE CAPACITY BUT KIDS DO
HAVE TO BE SERVED THERE.
THAT IS NOT TRUE ACROSS THE
WORLD.
AND IN SOME COUNTRIES, THERE'S
NOTHING FOR KIDS OR THEY'RE
HIGHLY SPECIALIZED SCHOOLS THAT
ARE NOT GOOD AND NOT APPROPRIATE
FOR MANY OF THE PEOPLE THAT ENDS
UP THERE.
SO WE REALLY NEED A WAY TO
FIGURE OUT HOW AUTISTIC CHILDREN
ACROSS THE GLOBE CAN RECEIVE
GUARANTEED HIGH QUALITY
EDUCATION IN SCHOOLS AND WE NEED
TO KNOW MORE ABOUT WHAT IS DOES
THAT MEAN.
WE'RE ALSO SHORT OF PEOPLE
PROVIDING THESE SERVICES AND
MUCH OF THAT IS FINANCIAL.
IT'S THAT WE DON'T GENERATE
REVENUE AND IN THE MEDICAL
SYSTEM IF YOU HAVE SOMEBODY
SEEING AUTISTIC KIDS THEY'RE
COSTING MORE THAN THEY'RE
RESULTING IN MONEY AND THAT
MEANS HOSPITALS ARE NOT GOING TO
HIRE A LOT OF DEVELOPMENT
BEHAVIORAL PEDIATRICIANS OR
CLINICAL PSYCHOLOGISTS DOING
AUTISM.
THERE'S A CHALLENGE ALSO THAT
THE REALITY IS THAT MUCH OF THE
WORK IN AUTISM IS NOT GOING TO
BE DONE BY EXPERTS.
SO WE NEED TO FIGURE OUT HOW DO
WE HELP PEOPLE PROVIDE ADEQUATE
CARE WITH SUFFICIENT TRAINING
WHO ARE NOT JUST AUTISM PEOPLE.
AND WE NEED TO CONSIDER HOW DO
WE PUSH REI MBURSEMENT FOR
FUNDING MODELS AND THIS IS NOT
UNIQUE IN ANY WAY, THE LANCET,
OUR COMMISSION IS THE IDEA OF
TASK SHARING AND FIGURING OUT
WHO CAN DO THE WORK AND HOW DO
WE ENSURE THERE'S ADEQUATE
TRAINING AND SUPPORT TO HELP
THIS BE DONE MORE EFFICIENTLY.
I THINK IT'S REALLY IMPORTANT TO
REMEMBER THAT 95% OF CHILDREN
UNDER THE AGE OF 5 WITH
DEVELOPMENT DISABILITIES DO NOT
LIVE IN HIGH-INCOME COUNTRIES.
THEY LIVE IN LOWER AND MIDDLE
CLASS COUNTRIES AND ARE SERVICE
DESERTS WHERE KIDS CAN GET
ALMOST NOTHING.
I THINK EVEN IN THE UNITED
STATES, COVID HAS CERTAINLY
SHOWN US THE INEQUITIES IN
MEDICAL PROVISIONS ACROSS OUR
COUNTRY.
AND ONE OF THE ISSUES I THINK
WHICH I THINK SOMEBODY HAS
ALREADY RAISED IS THAT FOR
FAMILIES, AND FOR AUTISTIC
INDIVIDUALS WHO ARE INDEPENDENT,
THEY MAY BE SERVICE USERS
THEY'RE WHOLE LIFE AND NEED TO
KNOW HOW TO DO THIS AND DO THIS
EASILY SO YOU CAN GET THE
SERVICES TO WHICH THEY'RE
ENTITLED.
SO SOME OF THE RECOMMENDATIONS
WERE JUST THE NEED FOR SERVICE
SYSTEMS TO BE MORE RESPONSIVE.
WE HEARD A DISCUSSION OF THAT
WITH SSA THIS MORNING.
ALSO SERVICE SYSTEMS NEED TO
INTEGRATE EVIDENCE-BASED
INTERVENTIONS IN TO THEIR CARE
MODELS AND THIS IS NOT ROUTINELY
DONE IN MANY SERVICE SYSTEMS.
LOOK AT EARLY INTERVENTION.
THERE'S SOME THINGS THAT ARE
THERE AND SOME THINGS THAT ARE
NOT.
WE NEED MORE HIGH QUALITY
RESEARCH CONDUCTED IN LOWER AND
MIDDLE CLASS COUNTRIES TO
ADDRESS THE SCIENCE AND WE NEED
TO ENSURE EQUITABLE ACCESS TO
SERVICES FOR UNDER SERVED AND
MINORITIZED GROUPS AND THAT
INCLUDES GIRLS AND WOMEN AND
INCLUDES PEOPLE MINIMALLY VERBAL
AND LGBTQ AND RACIAL AND ETHNIC
MINORITIES.
SO RECOMMENDATIONS.
ONE OF THE RECOMMENDATIONS FROM
PEOPLE PARTICULARLY IN OTHER
COUNTRIES IS WE NEED FORMAL
DOCUMENTATION THROUGH
GOVERNMENT, MENTAL HEALTH CARE
EDUCATION AND SOCIAL SYSTEMS
WHICH I THINK IN THE U.S. WE
HAVE.
WE NEED GOVERNMENT AND HEALTH
CARE SYSTEMS TO RECOGNIZE THE
NEED FOR INTEGRATING ACROSS
SYSTEMS WHICH HEARD ABOUT ALL
MORNING.
THOUGH I THINK AS A PRACTITIONER
HOW YOU DO THAT IS REALLY TOUGH
BECAUSE THE MEDICAL SYSTEM IS
CERTAINLY NOT GEARED TOWARDS
DOING CASE COORDINATION.
AND THEN WE NEED FOCUSSED
RESEARCH STRATEGIES THAT
PRIORITIZE CLINICAL PRACTICE
THAT INCREASE THE UNDERSTANDING
OF WHAT INTERVENTIONS WORK FOR
WHOM, WHEN, HOW WITH WHAT
OUTCOMES AND AT WHAT COST AND
THAT'S SOMETHING I HAVEN'T HEARD
ABOUT IN THE DISCUSSIONS SO FAR.
IT HAPPENS ON THE SMALL BASE OF
GRANT HERE OR THERE.
THERE'S A PCORI GRANT AND
ANOTHER NIH GRANT BUT IN ORDER
TO DO THIS WE NEED LARGE SAMPLES
AT WHEN HAVING SOMETHING WORKS
AND HAVING A SMART DESIGN MOVING
FROM ONE TREATMENT TO ANOTHER
TREATMENT HAS NOT RESULTED IN
INFORMATION ABOUT WHO IT WORKS
FOR.
IT'S RESULTED IN INFORMATION
ABOUT A TREATMENT COMPARED TO
ANOTHER TREATMENT COMPARED TO
NOTHING.
WE'RE READY FOR MOVING ON AND
SAYING WHO DOES THIS WORK FOR
AND WHEN.
AND AGAIN AS WE'VE DISCUSSED
EQUITY AND ACCESS AND USE OF
SERVICES AND RESEARCH.
HERE'S THE PROFOUND AUTISM
THEME.
THE INTENTION OF THE GROUP WAS
NOT AT ALL TO BE NEGATIVE
TOWARDS PEOPLE SPEAKING ABOUT
AUTISM.
I THINK THE INTENTION WAS TO
MAKE SURE PEOPLE WITH SEVERE
NEEDS FOR SUPPORT GET
ACKNOWLEDGED AND SOMEONE ALWAYS
PAYS ATTENTION TO THEM AND FOR
EXAMPLE, ICD11, THERE'S GROUPS
OF SUBTYPES OF AUTISM.
THE REALITY IS IF YOU HAVE A
LIST OF 15 SUB TYPES ON THE
WHOLE, YOU'RE NOT PEOPLE ARE NOT
GOING TO USE IT AND ATTEND TO IT
WHEREAS HAVING A WORD DOES HELP.
IN ORDER TO DEFINE THIS WE
AGREED WHAT WE WERE TALKING
ABOUT WERE PEOPLE WHO NEED
24-HOUR ACCESS TO AN ADULT WHO
CAN CARE FOR THEM IF CONCERNS
ARISE.
SO SOMEBODY LIVING SOMEWHERE WHO
HAS SOMEBODY IN THE HOUSE THERE
IF THEY NEED HELP OR IF THEY
DECIDE THEY WANT TO WANDER.
AND SOMEBODY WHO CAN'T
NECESSARILY TAKE CARE OF THEIR
BASIC ADAPTIVE DAILY NEEDS.
WE ENDED UP COMING UP WITH USING
I.Q. OR VERY LIMITED LANGUAGE
BECAUSE THERE ARE DATA FOR THOSE
THAT ARE AVAILABLE IN LARGE
SAMPLES.
SO THAT'S WHERE THOSE CAME FROM
AND IF WE CAN COME UP WITH A
BETTER METRIC, I THINK ALL OF US
WOULD AGREE.
WE'RE AWARE IN THIS POPULATION
OF PEOPLE WHO HAVE I.Q.'S BELOW
50 OR HAVE LIMITED SPOKEN AND
RECEPTIVE LANGUAGE.
THAT'S THE DIFFERENCE BETWEEN
SOMEBODY WHO UNDERSTANDS BUT
CAN'T TALK WELL.
THERE ARE OFTEN COMPLEX
CO-OCCURRING DIFFICULTIES BUT
THESE DIFFICULTIES DO OCCUR AS
PEOPLE HAVE SAID IN OTHER
POPULATIONS.
THEY'RE NOT UNIQUE TO THIS GROUP
BUT THEY ARE MORE FREQUENT.
IT TURNS OUT THAT WE WERE ABLE
TO LOOK AT THREE DATA SETS.
WE WERE ABLE TO IDENTIFY IF WE
USE THE I.Q. BELOW 50 OR VERY
LIMITED LANGUAGE SO BASICALLY
SINGLE WORDS OR VERY REPETITIVE
PHRASES.
WE WERE ABLE TO IDENTIFY KIDS
AND PLACING SOMEONE IN THIS
GROUP FROM MID CHILDHOOD OR
LATER WAS STABLE TO ADULTHOOD
AND SUGGESTING THIS AS A
VOLUNTARY TERM AND WE'RE
CONCERNED ABOUT RESTRICTING
PEOPLE'S EXPERIENCE.
SO IT NEEDS TO BE -- IT NEEDS TO
BE CLEAR THIS COULD BE SOMETHING
YOU COULD NOT USE IF YOU DON'T
WANT IT OR CERTAINLY IF YOU
DON'T NEED IT.
BUT WHAT WE DID FIND IS THAT IN
THREE DIFFERENT SAMPLES WE HAD A
HUGE RANGE OF HOW MANY PEOPLE
FELL IN THIS CATEGORY AND 48%, I
CAN SAY IS FROM OUR EARLY
DIAGNOSIS STUDY WHICH IS KIDS
DIAGNOSED WITH AUTISM AT AGE 2
OVER 30 YEARS AGO.
SO IT DOES NOT REFLECT WHO IS
GETTING DIAGNOSED AT AGE 2 NOW
OR EVEN FOUR OR THE LATEST CDC
DATA.
I THINK ONE IMPORTANT THING THAT
CAME OUT THOUGH IN DOING THIS IS
MOBA IS EPIDEMIOLOGICAL STUDY IN
NORWAY THEY STUDIED PREGNANCIES
FROM WOMEN FROM ULTRASOUND AT 16
WEEKS SO SOME KIDS ARE ACTUALLY
20 NOW.
AND ONE OF THE INTERESTING
THINGS THERE WAS IN FREQUENTLY
IN SCANDINAVIA, REGISTRIES ARE
USED TO IDENTIFY WHO HAS AUTISM
BUT REGISTRIES ARE PRIMARILY
POPULATED BY PHYSICIANS PUTTING
IN THE DIAGNOSIS.
WHAT WE FOUND IN THE DATA WAS IF
WE LOOK AT REGISTRIES, THERE'S
HARDLY ANYBODY FALLS IN PROFOUND
AUTISM BUT WE ACTUALLY HAVE DATA
FROM EARLY CHILDHOOD WITH KIDS
WERE SEEN FOR DIAGNOSIS AND THAT
RAISED THE LEVEL OF POPULATION
AND WHEN WE FOLLOWED UP THOSE
KIDS TO ABOUT 18%.
THE POINT THERE IS THOSE KIDS
ARE NOT GETTING IN REGISTRIES
AND WHO THEY ARE ARE KIDS WITH
AUTISM AND SEVERE INTELLECTUAL
DISABILITY BUT WHO PROBABLY GET
SERVICES THROUGH VARIOUS WHAT
THEY CALL HABILITATION IN
SCANDINAVIA AND NEVER EVEN MAKE
IT INTO PSYCHIATRY.
SO ONE OF THE IMPORTANT THINGS
IS THEY ARE KIDS LOST TO
RESEARCH AND WE NEED TO BE
CONSCIOUS OF WAIT A MINUTE,
WHERE DID THEY GO?
OUR GOAL IN HAVING THIS TERM NOT
AT ALL TO EXCLUDE OTHER PEOPLE
BUT TO AT LEAST BEGIN TO
IDENTIFY THIS IS A GROUP OFTEN
NOT INCLUDED UP RESEARCH BECAUSE
THEY CAN'T SIT THROUGH IMAGING
FOR EXAMPLE.
THERE'S MANY THINGS THEY CAN'T
DO AND IT'S HARDER TO WORK WITH
THEM.
SO THEY COST MORE MONEY AND TAKE
MORE TIME.
AND THEY DESERVE BEING ABLE TO
IMPROVE THE QUALITY OF THEIR
LIVES AS MUCH AS ANYBODY ELSE
AND I DON'T THINK ANYBODY WOULD
ARGUE WITH ME AND TO SUMMARIZE
WE RECOGNIZE PERSONALALIZED
DEVELOPMENTAL INTERVENTIONS OVER
THE LIFE COURSE AND NEED TO
INCLUDE IMPLEMENTATION SCIENCE
AND SEE WHAT IS BEING USED
OUTSIDE OF ACADEMIA AND HOW
EFFECTIVE ARE THINGS IN THE
COMMUNITY PARTICULARLY
CONTRASTING WHAT MAKES THE MOST
SENSE TO DIFFERENT SUB GROUPS OR
AT LEAST DIFFERENT PEOPLE IN
DIFFERENT STRATA.
WE NEED COST EFFECTIVENESS
RESEARCH TO SUPPORT THIS
DECISION MAKING AND WE NEED TO
INCLUDE STAKEHOLDERS IN FIGURING
THIS OUT AND DEVELOPING NEW AND
BETTER INTERVENTION AND WE NEED
TO OFFER THE POSSIBILITY OF
CULTURALLY ADAPTED AND TAILORED
INVENTION APPROACHES BECAUSE
THINGS ARE GOING TO BE DIFFERENT
IN DIFFERENT COUNTRIES IN
DIFFERENT PLACES AND WE NEED
LARGE SAMPLES AND THE USE OF
ADVANCE RESEARCH DESIGNS TO
ANSWER COMPLEX QUESTIONS.
I WANTED TO END WITH THE SLIDE.
THE SLIDE IS THE IDEA THAT
PEOPLE CAN REACH CERTAIN LEVELS
OF INDEPENDENCE AND THAT'S GOING
TO BE DIFFERENT FOR PEOPLE WHO
HAVE DIFFERENT LEVELS OF
CONSECUTIVE ABILITY.
BUT HOW MUCH SUPPORT THEY GET IN
THEIR SOCIETY WILL MAKE A
DIFFERENCE THERE AND IF WE MOVE
TO A SOCIETY THAT DOESN'T EVEN
FIND KIDS TO A SOCIETY THAT
IDENTIFIES POPULATIONS BUT
DOESN'T PROVIDE AS GOOD SERVICES
AND ALL THE WAY UP, WE CAN DO
BETTER FOR EVERYBODY FOR PEOPLE
WHO HAVE VERY LIMITED COGNITIVE
SKILLS AND HIGH COGNITIVE SKILLS
AND EVERYONE IN THE MIDDLE.
WE WANT TO HAVE A MESSAGE OF
HOPE IF WE WORK TOGETHER WE
COULD DO A BETTER JOB OF USING
WHAT KNOWLEDGE WE HAVE AND APPLY
IT TO OTHER MENTAL HEALTH
CONDITIONS.
WE CAN DO THIS TOGETHER AND THIS
IS THE PERFECT GROUP TO PRESENT
THIS TO AND I'M HAPPY TO ANSWER
QUESTIONS.
THANK YOU.
>> THANK YOU, DR. LORD.
THAT WAS CLEAR AND POWERFULLY
ARTICULATED.
NOW WE'LL OPEN IT UP FOR MEMBERS
OF THE IACC.
PLEASE.
>> DENA.
>> THANK YOU FOR AN INCREDIBLE
AMOUNT OF WORK YOU'RE TEAM DID
HERE ON ON THIS.
I'M IMPRESSED WITH IT.
ONE OF MY COLLEAGUES HAS
BREACHED A QUESTION I'M CURIOUS
ABOUT AS WELL.
IN LOOKING AT THE 32
PARTICIPANTS IT SEEMED THERE
WERE NO AUTISTIC RESEARCHERS
THAT PUBLICLY IDENTIFY AND
DEFINITELY NOBODY FROM NSAR AND
JUST A DISPROPORTIONATE
REPRESENTATION OF AUTISTIC
VOICES.
I KNOW THERE WERE A FEW PEOPLE
AS STAKEHOLDERS THERE AND MY
COLLEAGUE ASKED ABOUT A QUESTION
ABOUT PEOPLE OF COLOR CHOSEN FOR
THIS.
SO AGAIN I JUST WANT TO CHAMPION
YOU FOR THESE LAST TWO ARTICLES
ACTUALLY THE FIRST ONE ON AUTISM
IN NATURE WAS BRILLIANT AS WELL
BUT WONDERING HOW YOU MIGHT
ADDRESS THAT FOR OUR
CONSTITUENTS BECAUSE THEY'RE
ASKING.
>> NO, IT'S A FAIR QUESTION.
I THINK THERE WERE THREE PEOPLE
WHO IDENTIFIED WITH AUTISM WHO
WERE INVOLVED IN ADVOCACY ON THE
COMMITTEE AND WE WERE TRYING TO
RECRUIT PEOPLE FROM DIFFERENT
PERSPECTIVES.
ALEX AND MARINA WHO IS A
RESEARCHER AND JAMES CUSACK.
SO MAYBE WE SHOULD HAVE HAD
MORE.
I MEAN, YOU CAN IMAGINE THERE
WERE ALSO TWO AFRICAN AMERICAN
PEOPLE AND TWO LATINEX PEOPLE
AND ALL SORTS OF -- ACTUALLY
PEOPLE REPRESENTING OTHER
ETHNICITIES WHO WERE NOT WHITE.
YOU'RE RIGHT.
I THINK IT'S QUITE DIFFICULT
WHEN TO PUT TOGETHER A COMMITTEE
THAT PLEASES EVERYBODY.
I THINK AS I KNOW MORE I
DEFINITELY MIGHT HAVE CHANGED
THINGS SLIGHTLY BUT WE WERE
TRYING TO MAKE EVERYBODY HAPPY
INCLUDING LANCET.
SO IT'S A VALID POINT.
I THINK WE REALLY BENEFIT FROM
MARINA WHO IS A MOTHER OF
AUTISTIC KIDS AND HAS AUTISM
HERSELF WHO IS NOT A
PROFESSIONAL ADVOCATE BUT SHE
HAS A Ph.D. AND VERY BRIGHT
WOMAN FROM ARGENTINA.
ALEX, WHO HAS HIS OWN
PERSPECTIVE AND KNOWS A LOT OF
PEOPLE AND IS VERY INTERESTED IN
COMMUNICATION AND JAMES CUSACK
WHO ALSO DOESN'T DO RESEARCH
ANYMORE BUT IS A Ph.D..
I THINK THEY WERE VERY IMPORTANT
PARTS TO THIS GROUP BUT THERE
WERE THREE OF THEM.
THE GROUP ALSO IS PROBLEM TLI --
PROBABLY THE GROUP WE STARTED
WITH AND ADDED ON PEOPLE AS WE
NEEDED HELP.
SO ABOUT THE LAST FIVE PEOPLE OR
SO ARE PEOPLE THAT WERE RUNNING
AROUND WRITING SECTIONS AND
MAKING TABLES, ETCETERA.
IT'S A FAIR COMMENT.
>> THANK YOU, CATHY.
>> HELEN.
>> I'D LIKE TO FOCUS ON THE
CONTENT OF THE REPORT AND
PARTICULARLY YOUR PRESENTATION
WHICH I THOUGHT WAS A TOUR DE
FORCE AND A COUPLE OF THE KEY
POINTS YOU MADE REALLY IS
SOMETHING OUR COMMITTEE NEEDS TO
GRAPPLE WITH AND IT'S BUBBLING
BELOW THE SURFACE BUT WE HAVE A
VERY EFFECTIVE WAY OF TREATING
KIDS WITH AUTISM USING
BEHAVIORAL INTERVENTIONS.
IT WOULD BE LOW HANGING FRUIT TO
ADDRESS THAT CRITICAL ISSUE THAT
YOU BROUGHT UP.
IT DOESN'T WORK FOR EVERYBODY
BUT IT DOES WORK FOR THE VAST
MAJORITY OF KIDS.
WE THINK.
BUT WHO EXACTLY AND HOW AND WHEN
AND WHERE?
THOSE ARE CRITICAL QUESTIONS.
IT'S JUST SHOCKING TO ME, FOR
EXAMPLE, IN THE LAST RFA FOR THE
AUTISM CENTERS OF EXCELLENCE,
TREATMENT WAS NOT EVEN MENTIONED
ONCE.
YOUR CALL FOR LARGE SCALE
STUDIES TO ADDRESS THIS BROAD
ISSUE OF BEHAVIORAL
INTERVENTIONS FROM A
PERSONALIZED APPROACH IS
CRITICAL BECAUSE IT SEEMS TO ME
THE WAY YOU PRESENT IT WITH
SKRFTSI INING --
THE CURRENT INDIVIDUALS ACROSS
THE LIFE SPAN RIGHT NOW BECAUSE
WE ARE INVESTING SO MUCH IN THE
PERSONALIZED INTERVENTIONS THAT
TARGETS GENETIC THERAPIES AS YOU
SAY ARE NOT GOING TO BE REALIZED
FOR QUITE A LONG TIME.
I THINK THAT'S SOMETHING WE ALL
DISH THINK WE ALL COULD BRING BE
BROUGHT TOGETHER ON THIS
COMMITTEE.
WE'RE DIVIDED ON A LOT OF
FACTORS BUT FOCUSSING ON WHAT IS
IT WE CAN DO RESEARCH WISE THAT
WOULD BRING THE BEHAVIORAL
INTERVENTIONS TO THE NEXT LEVEL
THAT WE NEED IN THE WAY YOU
DESCRIBED.
THANKS FOR ALL YOUR WORK, CATHY.
I KNOW HOW MUCH THIS HAS TAKEN
FROM YOU AND THE WORK OF THE
COMMITTEE IS TO BE COMMENDED.
>> SAM.
>> I ALSO WANTED TO ADD ON THAT
I THINK IT'S IMPORTANT IN FUTURE
WORK TO INCLUDE PEOPLE WHO DO
HAVE HIGH SUPPORT NEEDS AND NEED
TO USE AN AAC WHO HAVE
INTELLECTUAL DISABILITIES
BECAUSE IN MY EXPERIENCE WHEN I
HAVE COME TO THE CONCLUSION A
SINGLE SPECTRUM OF MILD TO
PROFOUND IS NOT THE CORRECT WAY
TO REFER TO AUTISTIC PEOPLE I'M
SPEAKING FROM LISTENING TO THE
EXPERIENCES OF ACU USERS AND
PEOPLE WHO NEED SIGNIFICANT
ASSIST JANSANCE WHO EXPRESSED
CONCERN ABOUT THAT KIND OF
LANGUAGE.
IT'S IMPORTANT TO INCLUDE THAT.
WE HAVE MEMBERS OF IACC RIGHT
NOW AND IVANOV AND HARI IS AN
ACU USER AND IVANOVA IS A PERSON
WITH INTELLECTUAL DISABILITY AND
THEY'VE EXPRESSED QUITE WELL
THEIR CONCERN IF THOSE NEEDS ARE
LUMPED TOGETHER INTO SOMETHING
CALLED PROFOUND AUTISM IT
OBSCURES WHAT PEOPLE ACTUALLY DO
NEED.
>> WE DID AND WE DID HAVE
PARENTS OF PEOPLE WITH AND WE
DIDN'T HAVE ANY INDIVIDUALS.
>> THAT CAN PROVIDE A DIFFERENT
PERSPECTIVE.
>> THANKS, SAM.
JENNIFER.
>> HI, JENNIFER JOHNSON WITH THE
ADMINISTRATION FOR COMMUNITY
LIVING AT HHS.
THANK YOU FOR THE OVERVIEW.
IT WAS VERY THOROUGH AND
DETAILED.
I APPRECIATE THE INFORMATION.
THE RECOMMENDATIONS IN YOUR
DISCUSSION SEEM TO FOCUS ON THE
INDIVIDUAL AND SORT OF THE
INDIVIDUAL'S IMMEDIATE
ENVIRONMENT AND HOW RESOURCES
IMPACT THEIR EXPERIENCE WHICH
MAKES SENSE AND THE WAYS IN
WHICH AUTISM IS EXPERIENCED BY
DIFFERENT INDIVIDUALS.
BUT I WONDER ABOUT THE EXTENT TO
WHICH THE DISCUSSIONS ADDRESSED
SYSTEM ISSUES AND THE
INTERACTION BETWEEN THE
INDIVIDUAL AND THE SYSTEM THAT
ULTIMATELY DESIGNS THE SERVICES
THAT THE INDIVIDUAL IS RECEIVING
AND I'M CURIOUS ABOUT WHAT WE
HEAR ABOUT ISSUES OF
INTERSECTIONALITY AND
INDIVIDUALS WHO COME FROM
DIFFERENT DIVERSE BACKGROUNDS
EXPERIENCE THE SERVICE SYSTEM
AND THE SYSTEM THAT DESIGNS
THOSE SERVICES DIFFERENTLY FROM
THE RIGHT MAJORITY.
AND THERE DON'T TO BE MANY
RECOMMENDATIONS AIMED AT
RESEARCHING THE SYSTEM AND
RESEARCHING IT THROUGH THE
INTERSECTIONAL LENS AND IF WE
DID, BETTER UNDERSTAND THE
SYSTEM AND SYSTEMS AND SERVICES
THROUGH THE INTERSECTIONAL LENS
AND IF WE BETTER UNDERSTOOD THAT
COULD WE CREATE BETTER EQUITIES
AND OUTCOMES FOR INDIVIDUALS WHO
COME FROM DIVERSE BACKGROUNDS.
I'M WONDERING IF YOU CAN SPEAK
TO WHICH THE COMMITTEE LOOKED AT
THE ISSUES AND IT SEEMS LIKE IT
MIGHT BE THERE A LITTLE BIT BUT
NOT AS OFTEN AS THE
RECOMMENDATIONS THAT WENT TO
INDIVIDUAL SERVICES AND
SUPPORTS.
>> YOU'RE ABSOLUTELY RIGHT.
I THINK WE DID TALK ABOUT
SERVICES.
WE HAD A NUMBER OF MEMBERS WHO
WERE SUPPOSED TO REPRESENT
SERVICES THAT BAILED ON US.
I THINK WHAT YOU SEE REPRESENTS
THE KNOWLEDGE OF THIS COMMITTEE.
IT ISN'T AT ALL THAT SERVICES
AND SYSTEMS ARE NOT IMPORTANT.
YOU ARE ABSOLUTELY RIGHT.
I THINK WE JUST ENDED UP
STICKING TO WHAT WE FELT ENOUGH
TO SAY SOMETHING SENSIBLE ABOUT.
YOU ARE COMPLETELY RIGHT.
AND FOR IMPLEMENTATION AND
ASPECTS OF SYSTEMS I KNOW LITTLE
ABOUT EXCEPT AS A PARTICIPANT.
YOU'RE RIGHT.
>> ALISON.
>> FIRST I WANT TO THANK YOU,
CATHY FOR A BEAUTIFUL AND
PASSIONATE TALK AND IT'S NICE TO
SEE YOU.
I ACTUALLY WAS GOING RAISE
SOMETHING VERY SIMILAR IN THAT
IN ADDITION TO HIGHLIGHTING LIKE
WHICH INTERVENTION AT WHICH
POINT IN TIME FOR WHICH PERSON
TRYING TO FIGURE OUT WHO CAN DO
THE PIECES OF THESE
EVIDENCE-BASED INTERVENTIONS IS
CRITICAL.
AND I JUST APPRECIATE YOU
HIGHLIGHTING THAT WE'RE NOT
GOING TO BE ABLE TO RELY ON
DEVELOPMENT PEDIATRICIANS AND
PSYCHOLOGISTS AND WE NEED TO
START LOOKING AT EXISTING
SERVICES SYSTEMS TO FIGURE OUT
HOW CAN WE JUST DO A BETTER JOB
OF MORE QUICKLY DISSEMINATING
EVIDENCE-BASED INTERVENTIONS
BECAUSE AS HELEN WAS SAYING, WE
HAVE QUITE A FEW OF THEM THAT
HAVE A FAIR EVIDENCE BASE BUT
WE'RE STILL NOT SO GREAT AT
GETTING THEM INTO COMMUNITIES
AND GETTING THEM ACCESS.
WE DON'T HAVE TO GO TO LOW AND
MIDDLE RESOURCES COUNTRIES.
LIKE HERE IN THE UNITED STATES
AND MOST PART OF THE COUNTRY,
PEOPLE CAN'T ACCESS APPROPRIATE
EVIDENCE-BASED SERVICES.
SO I ALSO JUST THANK YOU, THANK
YOU, FOR EVERYTHING YOU'RE DOING
AND THAT'S MY TWO CENTS WAS ALSO
ON IMPROVING THE SERVICE SECTOR.
>> AGAIN, I COMPLETELY AGREE.
WE TALKED A LITTLE BIT ABOUT
TASK SHARING AIMED AT THE IDEA
OF WHO CAN DO THIS.
THERE'S BEEN FOCUS RECENT YEARS
ON EARLY IDENTIFICATION AND WHO
CAN IDENTIFY KIDS EARLY BUT MUCH
LESS FOCUSSED IN TERMS OF
RESEARCH ON WHO CAN ACTUALLY
PROVIDE INVENTION AND SUPPORT
AND WE NEED TO DO THAT.
WE ABSOLUTELY NEED TO DO IT.
EVEN THEN WE NEED TO KNOW WHAT
DO THEY NEED AND WHO IS GOING TO
BENEFIT FROM THIS AND WHO ISN'T
AND WHO NEEDS MORE AND WHO
DOESN'T EVEN NEED IT.
>> ALYCIA.
>> HI, DR. LORD.
SO FROM THE PERSONALIZED CARE
AND STEP APPROACH MODEL THERE'S
SO MANY DIFFERENT GREAT THINGS
THAT NOT JUST THIS COMMITTEE BUT
INDIVIDUAL RESEARCHERS NEED TO
DO.
WOULD YOU BE ABLE TO IDENTIFY
THREE TO FIVE OF THEM WE SHOULD
BE PUTTING INTO THE STRATEGIC
PLAN TO MAKE SURE IT GETS
PRIORITY RESEARCH IF THAT MAKES
SENSE AND WE KIND OF LIKE START
OUT STRONG IN A PARTICULAR WAY
IN OUR STRATEGIC PLAN?
>> I THINK PART OF THE PROBLEM
IS WE NEED MULTI-SITE STUDIES
WITH RELATIVELY LARGE SAMPLES.
I THINK WE COULD BE FOCUSSED
ABOUT WHAT INTERVENTIONS ARE
PROVIDED BUT I THINK WE DO NEED
SUFFICIENT DOCUMENTATION OF THE
KIDS AND ADULTS IN THE
INTERVENTIONS OR YOU CAN'T SAY
WHO THEY'RE GOING TO WORK FOR.
THAT'S ONE OF THE PROBLEMS FOR
DOING FOR EXAMPLE, TOTAL
EFFECTIVENESS OR RESEARCH
WITHOUT CONSIDERING WHO'S THERE.
BUT I THINK WE COULD BE FOCUSSED
ABOUT THAT.
I THINK THERE HAVE BEEN SOME
STUDIES THAT HAVE COMPARED
TREATMENTS BUT I'M ACROSS THE
HALL FROM SOMEONE DOING RESEARCH
AND THERE'S HARD TO DO AND
COMPL
COMPLICATED TO REPORT AND WE
NEED TO SUPPORT THE INFORMATION
THAT GETS OUT AND DECIDE WHAT
ARE POSSIBLE FACTORS.
AS PEOPLE IN THE COMMITTEE HAVE
REPEATEDLY SAID, THERE'S
HUNDREDS OF THINGS TO MAKE A
DIFFERENCE BUT I THINK WE COULD
NARROW IT DOWN TO FOUR OR FIVE
THINGS AT DIFFERENT AGE LEVELS
THAT ARE LIKELY TO MAKE A
DIFFERENCE IN SOMEBODY'S NEED
FOR A CERTAIN KIND OF TREATMENT
AND RESPONSE TO THAT TREATMENT
AND THEN WE WOULD NEED TO EXPECT
THOUGH THAT A SAMPLE THAT
SOMEHOW PEOPLE GET BIG ENOUGH
SAMPLES THAT ARE DIVERSE ENOUGH
TO STUDY THAT.
PART IS OUR WHOLE SYSTEM IS
PREDOMINANTLY INVESTIGATOR BASED
STUDIES OF PEOPLE WHO DEVELOP A
TREATMENT.
IT SEEMS PRETTY GOOD AND THEN
THEY REPEATEDLY SHOW IT WORKS
COMPARED TO WHATEVER MOST
LIMITED COMPARISON GROUP THEY
CAN FIND IN WHATEVER GROUP IS
MOST LIKELY TO RESPOND TO IT.
AND WE NEED TO STEP BACK AND DO
SOMETHING IN A DIFFERENT WAY.
I THINK THAT'S ONE
RECOMMENDATION.
I THINK THAT TAKES -- AND I AM
NOT -- LUCKILY FOR YOU ALL I'M
NOT LEADING NIH OR ANY AGENCY
BUT I THINK WE NEED HELP FROM
DR. GORDON AND DR. DANIELS ABOUT
HOW DO WITH MAKE THIS HAPPEN.
I THINK WE COULD DO IT AND I
DON'T THINK IT WOULD COST
COMPARED TO THE AMOUNTS OF MONEY
THAT HAVE GONE INTO FOR EXAMPLE
GENETICS WHICH I'M GLAD IT'S
GONE, BUT I THINK WE COULD FIND
OUT THINGS THAT WOULD ANSWER
SIMPLE QUESTIONS.
>> ALYCIA DID YOU WANT TO SAY
SOMETHING ELSE?
>> I WANT OTHERS TO HAVE A
CHANCE TO SPEAK.
>> OTHER COMMENTS OR QUESTIONS
FROM MEMBERS OF THE COMMITTEE?
THIS HAS BEEN A REALLY
ILLUMINATING DISCUSSION.
OKAY.
WELL, THANK YOU VERY MUCH,
CATHY, REALLY, FOR JOINING US
TODAY AND PRESENTING THE LANCET
ALL RIGHT AND SUSAN, AM I
CORRECT IT'S AVAILABLE ON THE
IACC WEBSITE?
>> WE HAVE A LINK ON THE
WEBSITE.
>> GREAT.
AND LARRY HAS A THUMBS UP
BECAUSE HE KNOWS IT'S AVAILABLE
OR TELL YOU WHAT A GREAT JOB HE
DID AND SURE WE ALL SHARE THE
SENTIMENT AND WANT TO ENCOURAGE
MEMBERS TO READ THE REPORT AND
THERE'S SPECIFICITY WE CAN TAKE
WITH US INTO THE STRATEGIC PLAN?
I PARTICULARLY LIKE THE
FORMATION YOU MENTIONED IN
PARTICULAR AROUND ENSURE IING AND
THERE'S MECHANISMS IN PLACE TO
FACILITATE AND WE HAVE TO LOOK
HARD AT THAT.
PAUL, YOU WANTED TO MAKE A
COMMENT?
>> I'M SORRY, BRIEFLY.
GOING TO THE ISSUE JENNIFER
JOHNSON RAISED EARLIER AND
CATHERINE RESPONDED IT DOESN'T
ADDRESS THE INTERSECTIONALITY
BUT FOR THOSE WHO MAY WANT TO
USE THE REPORT AS A SPRING BOARD
AS THE MENTION OF IT IN THE KEY
MESSAGES BLOCK ON PAGE ONE IT
TALKS ABOUT THE NEED FOR HEALTH
CARE, COORDINATION AND SOCIAL
SECTORS ACROSS THE LIFE SPAN.
THERE'S SOMETHING THERE YOU CAN
SPRING OFF OF, I THINK.
>> THANKS, PAUL.
AGAIN, WE THANK YOU FOR YOUR
CONTRIBUTION.
WE'RE RUNNING A FEW MINUTES
AHEAD.
SUSAN, I SUGGEST SINCE WE HAD
SOME ABBREVIATE THE BREAK WE
TAKE ANOTHER BREAK AND COME BACK
AT 4:00 AS SCHEDULED TO DO THE
REST OF OUR COMMITTEE BUSINESS
FOR THE DAY.
DOES THAT SOUND GOOD TO YOU.
>> THAT SOUNDS GOOD.
WE'LL TAKE ANOTHER BREAK.
IT IS NOW 3:50.
WE'LL RESUME AT 4:00 AND TRY TO
COMPLETE THE REST OF THE
BUSINESS FOR THE DAY.
THANK YOU VERY MUCH EVERYONE.
THANK YOU AGAIN, DR. LORD
>> WE'RE NOW GOING TO GO TO
THE FINAL SEGMENT OF TODAY'S
MEETING WHICH IS A RETURN TO THE
IACC BUSINESS AND TURN IT BACK
TO SUSAN.
I THINK THERE'S TWO MORE ASPECTS
WE NEED TO DISCUSS TODAY.
WE'LL BE TALKING ABOUT THE
SUMMARY OF ADVANCES.
WE TALKED ABOUT THIS LAST
MEETING AND DIDN'T COMPLETE THE
DISCUSSION SO WE WERE GOING TO
COME BACK TO IT TODAY.
AS A REMINDER FOR 2020 WE
STARTED A LITTLE BIT LATE ON
PUTTING TOGETHER THE SUMMARY OF
ADVANCES BECAUSE THE COMMITTEE
ONLY STARTED WORK AGAIN IN JULY.
WE'RE TRYING TO CATCH UP ON
THAT.
SUBMITTED A NUMBER OF
NOMINATIONS AND TODAY WE WANT TO
DO THE FINAL PASS AT REFINING
THAT LIST AND AFTER WE'VE MADE
DECISIONS ON A FEW ITEMS THAT
WERE QUESTION MARKS WE WILL GO
AHEAD AND SEND THE COMMITTEE
BALLOTS AND YOU'LL BE ABLE TO
VOTE ON THE TOP 20.
AND EVERYTHING ON THE LIST WILL
BE LISTED ON THE BACK OF THE
DOCUMENT BUT ONLY THE TOP 20
WILL HAVE WRITTEN UP SUMMARIES
OF THEM IN THIS DOCUMENT.
SO TODAY WE'RE GOING TO TALK
ABOUT THOSE NOMINATIONS.
AND THAT'S WHAT WE ARE PLANNING
TO DO.
WE'LL MOVE INTO THAT NOW.
I WILL LET JOSH LEAD THE
DISCUSSION OF SOME OF THE
REMAINING ARTICLES WE NEED TO
DISCUSS.
>> JUST TO REMIND AND MAKE SURE
WE'RE ALL AWARE OF THE
PROCEDURES, LIKE SUSAN SAID,
WE'RE AIMING TO CHOOSE 20 OF
THEM TO SELECT.
AND THE IACC STAFF WENT THROUGH
THE NOMINATIONS AND THERE ARE
SOME THEY WANTED TO BRING UP FOR
DISCUSSION BUT I ALSO WANT TO
ENABLE THOUGH WE HAVE LIMITED
TIME, THOSE OF YOU WHO HAVE
INTEREST IN DISCUSSING ANY OF
THE NOMINATIONS YOU PUT FORWARD
TO TRY TO BRING FORTH OR ANY
NOMINATIONS YOU HAVE CONCERNS
ABOUT TO PLEASE GO AHEAD AND DO
SO.
SO JUST YOU CAN EVEN START
RAISING YOUR HANDS NOW BUT WE'LL
GO THROUGH THE NOMINATIONS
QUESTION BY QUESTION AND THE
FIRST QUESTION IS ON QUESTION
ONE SCREENING AND DIAGNOSIS.
THESE QUESTIONS ARE TAKEN FROM
THE OLD STRATEGIC PLAN WE'LL
REVISE THE PROCESS NEXT YEAR
WHEN WE HAVE THE NEW VERSION AND
THERE'S SOMETHING LIKE 12 OR SO
DIAGNOSES AND TWO OF THEM WERE
IDENTIFIED BY OUR STAFF AS SOME
CONCERN BECAUSE THEY MAY NOT BE
ASD SPECIFIC ENOUGH.
ONE TREND IN PEDIATRIC
DEVELOPMENT SCREENING AND VALVE
OF THE COGNITIVE BATTERY AND
INTELLECTUAL DISABILITY.
THESE ARE CONCERNS BROUGHT UP BY
THE OARC STAFF FOR YOUR
CONSIDERATION AS YOU CONSIDER
HOW TO VOTE.
I WANTED TO OPEN IT UP TO ANY
QUESTIONS OR COMMENTS OR
PROMOTIONS FOR ANY OF THE OTHER
NOMINATIONS OR THESE TWO FOR
QUESTION ONE SCREENING AND
DIAGNOSIS AND SEE IF THERE'S ANY
COMMENTS FROM ANY MEMBERS OF THE
IACC ON ANY OF THOSE
NOMINATIONS?
>> I WILL MENTION AT THE TOP
THERE, THAT WASN'T THE BEST
WORDING.
THESE ARTICLES ARE NOT
QUESTIONABLE.
THESE ARE QUESTIONS WE HAD ABOUT
THE ARTICLES.
>> THANK YOU.
SORRY ABOUT THAT.
>> SO THAT WAS INADVERTENT AND
WE DO HAVE POLLS TO GET AT WHAT
PEOPLE FEEL ABOUT THESE ARTICLES
BUT YOU CAN FEEL FREE TO TALK
TOO.
>> LET'S NOT DO THE POLLS
BECAUSE THE POLLS ARE TOO BINARY
I'D RATHER HAVE PEOPLE DISCUSS
IF THEY HAVE ANY PARTICULAR
ARTICLES THEY'D LIKE TO BRING
UP.
I'M NOT HEARING ANY.
I DON'T WANT TO DOMINATE THE
DISCUSSION SO PLEASE IF ANYBODY
ELSE HAS THINGS THEY WANT TO
DISCUSS.
ONE OF THE NOMINATIONS IS INDEED
WAS THE ONE DONE BY THE
DEPARTMENT OF EDUCATION AND
ARTICLE AND THIS IS A
COMMUNICATION AND SURVEILLANCE
TOOL.
I'VE THOUGH GOT THE DOCUMENT
WITH ALL THE NOMINATIONS THE
ADOBE DOCUMENT.
THIS IS ATTRACTIVE NOT BECAUSE
IT'S A DEFINITIVE NEW WAY OF
SCREENING BUT BECAUSE IT WAS A
POTENTIALLY NEW TOOL PILOTED IN
A LARGE GROUP OF CHILDREN AND UP
PARTICULAR SUGGESTS THIS TOOL
MAY HAVE A HIGHER POSITIVE
PREDICTIVE VALUE THAN THE
CURRENT STATE OF THE ART TOOL
FOR ADDRESSING THIS.
IT'S STILL A LITTLE BIT EARLY TO
SAY WE OUGHT TO BE USING BUT AN
INTERESTING ARTICLE TO BRING TO
YOUR ATTENTION.
AND THIS WAS NOMINATED BY OUR
OARC STAFF AND VALIDATION A
DEVELOPMENT TOOL FOR LOW
LITERACY AUTISM SCREENING AND
THOUGH THIS WAS EARLY IN THE
PROCESS OF DEFINING THE TOOL AND
THE STUDY WASN'T QUITE AS LARGE,
WHAT I LIKED ABOUT THIS IS IT
WAS CONDUCTED IN REAL WORLD
SETTINGS AND IN CHILDREN FROM
LOW-INCOME AND ETHNIC RACIAL
COMMUNITIES WHERE ENGLISH WAS
NOT THE PRIMARY LANGUAGE WHICH
FITS WITH THE GROWING INTEREST
IN STUDIES RELEVANT TO DISPARITY
POPULATIONS.
THOSE ARE TWO I HAPPEN TO FIND
INTERESTING.
AND ANY OTHERS PEOPLE WOULD LIKE
TO MENTION, PLEASE FEEL FREE TO
DO SO.
ALYCIA DID YOU HAVE A COMMENT OR
QUESTION?
>> THE HARRIS ARTICLE IS LISTED
IN 2020 BECAUSE THAT'S WHEN I
WAS ONLINE AND WAS PUBLISHED.
>> WHETHER IT CAME OUT IN PRINT
OR IN EPUB FORM.
>> ANOTHER QUESTION.
IN LIGHT OF THE COMMENTS COULD
YOU PLEASE REMIND US OR TELL US
AGAIN YOUR VISION OF WHAT MERITS
ARE BEING DESIGNATED IN ADVANCE.
HOW SIGNIFICANT, HOW DEFINITIVE,
THINGS LIKE THAT?
IDEALLY WE'D BE TALKING ABOUT
THINGS WE'D WANT THE PUBLIC TO
KNOW ABOUT BECAUSE THEY'RE
EITHER VERY PROMISING OR
DEFINITIVE ENOUGH THAT WE WANT
THE PUBLIC TO BE FOLLOWING UP ON
THIS AND WHEN WE SAY THE PUBLIC
WE MEAN CONGRESS DOING THE
REPORT BEING MADE.
THAT HAS TO BE TEMPERED BY
HIGHLIGHTING ADVANCES IN EACH OF
THE SEVEN AREAS.
SOME HAVE ADVANCES READY FOR
PRIME TIME AND I THINK WE'LL
TALK ABOUT ONE OR TWO OF THEM
AND MOST DO NOT AND WE HAVE TO
TEMPER.
WHAT WE WANT TO TRY TO AVOID IS
NUMBER ONE WE'VE SPOKEN IN THE
PAST ABOUT THAT WE WANTED TO BE
NOVEL NOT JUST REVIEWING
SOMETHING THAT'S HAPPENED IN THE
PAST AND TWO WE WANT TO AVOID
GIVING FOR LACK OF A BETTER TERM
FALSE HOPE BY CITING STUDIES TOO
SMALL TO GIVE US THE ANSWERS.
THESE TWO THINGS THAT I'M CITED
ARE EARLY MEANING THEY'RE TOOLS
THAT ARE BEING TESTED FOR THE
FIRST OR SECOND TIME HAVING BEEN
PROVEN OVER AND OVER AGAIN BUT
THE STUDIES ARE LARGE ENOUGH 600
UNDER SERVED CHILDREN THE
STUDIES ARE LARGE ENOUGH WE CAN
BE CONFIDENT IN THE STUDIES
RESULT WE JUST DON'T KNOW HOW
BROADLY APPLICABLE THEY ARE.
THAT'S WHAT I HAVE TO SAY ABOUT
THAT AND OTHERS MAY ADD TO IT AS
WELL.
ALICE.
>> GIVEN ALL THE SENSITIVITY
AROUND SCREENING I THINK MAYBE
WE SHOULD WAIT FOR MORE
DEFINITIVE FINDINGS JUST
BECAUSE -- I DON'T KNOW.
IT'S AN ISSUE I CARE ABOUT AND
I'VE SEEN MEASURES PUSHED OUT
TOO SOON AND THEN THEY DON'T
ACTUALLY WITH CONTROL WHATEVER
THEY DON'T WORK QUITE AS WELL.
I DON'T KNOW.
I JUST THINK GIVEN THE
IMPORTANCE IN TERMS OF WANTING
TO SEE SCREENING RECOGNIZED,
MAYBE THE MORE DEFINITIVE
STUDIES.
>> FAIR ENOUGH.
ALICE, ARE THERE ANY IN THE
CATEGORY THAT SPEAK TO YOU
BECAUSE THE OTHERS I NOTICED
WERE MORE ABOUT WHAT'S HAPPENING
IN THE WORLD RIGHT NOW AND
SCREENING LIKE THIS IN THE
ARTICLE WHERE THEY'RE LOOKING AT
TRENDS IN PEDIATRICIAN SCREENING
DEFINING THE STATE OF AFFAIRS
BUDS NOT AN ADVANCE IN HELPING
US KNOW WHAT TO DO.
>> FOR ME THE STUDIES THAT SPEAK
TO WHAT IS HAPPENING AND THE
ARTICLE SPEAKING TO DISPARITIES
IS PARTICULARLY IMPORTANT.
>> THAT'S THIS ONE HERE THE
CONSTANTINO ARTICLE.
THANK YOU.
THAT'S A GOOD NOMINATION TO
CONSIDER.
LET ME CHANGE THE COLOR OF THAT
HIGHLIGHT WHICH IS MY OWN SHORT
HAND FOR THINGS I PERSONALLY WAS
INTERESTED IN.
I APPRECIATE THAT INPUT.
AND YOU SHOULD BE LISTENING WHAT
TO VOTE FOR.
ONE MORE COMMENT ON THE FIRST
GROUP AND THEN WE SHOULD MOVE ON
TO THE NEXT.
DENA.
>> A CLARIFICATION.
I HAVE A 2000 AND 2021 DOCUMENT
WITH VERY SIMILAR NAMES.
>> THE DOCUMENT WE'RE WORKING ON
NOW IS 2020.
THE 2021 DOCUMENT WE'LL CONSIDER
THAT.
WHEN WILL WE WORK ON FINALIZING
THAT ONE?
>> IN APRIL.
WE'RE CATCHING UP.
>> I'M CLEAR NOW, THANK YOU.
I WAS JUST CONFUSED.
>> JOSH ARE YOU GOING TO GO BACK
TO THE ONES WITH QUESTIONS.
>> LET ME START SHARING.
WE DON'T NEED TO DECIDE ON THEM
IS THE ISSUE.
I THINK PEOPLE WILL VOTE, NO?
>> THE PROBLEM IS THAT WE DON'T
KNOW WHETHER WE SHOULD INCLUDE
THEM ON THE BALLOT.
ARE WE INCLUDING ANYTHING ON THE
BALLOT?
>> IN MY MIND THEY'RE NOT
HARMFUL TO INCLUDE IN THE
BALLOT.
>> IT WAS JUST IN THE PAST?
I'M OPEN TO OTHER SUGGESTIONS?
WE HAD MOST THE ARTICLES
FOCUSSED ON ASD BUT WE'RE FINE
IF THE COMMITTEE WANTS TO
INCLUDE THINGS ABOUT DEVELOPMENT
OR OTHER THINGS.
JUST WHERE IS THE LINE FOR WHAT
GETS INCLUDED AS A CONSIDERATION
FOR AN AUTISM ADVANCE.
BUT THE COMMITTEE WANTS TO
INCLUDE THEM, THEY'RE FINE.
>> SO SUSAN, LETS TAKE A VOTE ON
THESE TWO WITH THAT IN MIND.
IT'S NOT A CRITERIA I DISCUSSED
EARLIER BUT COULD HAVE HAD IN
RESPONSE TO PAUL.
WE TRY TO FOCUS ON ARTICLES THAT
ARE FOCUSSED ON AUTISM.
NOW, THESE TWO ACTUALLY ARE
SLIGHTLY DIFFERENT IN THAT
REGARD.
ONE IS REMEMBER I MENTIONED THAT
THE OTHER ARTICLE ON TRENDS IN
WHEN PEDIATRICIANS ARE SCREENING
FOR AND THIS ARTICLE IS ABOUT
DEVELOPMENT DISABILITIES WRIT
LARGE AND NOT JUST AUTISM.
THAT'S THE FIRST ONE.
THE SECOND ONE WHICH IS
VALIDATION OF THE NIH TOOLBOX
IT'S VALIDATION OF A TOOLBOX AND
THEY'RE VALIDATING IT IN FRAGILE
X IS MY RECOLLECTION AND A
COUPLE OF ANOTHER
NEURODEVELOPMENTAL DISORDER
INCLUDING AUTISM.
IT'S A LITTLE BIT OF A GRAY AREA
WHETHER IT IS SUFFICIENT BY
DEALING WITH AUTISM.
IF RESTRICTING ARTICLES THEN
SUSAN MAYBE WHAT YOU'RE SAYING
IS WE SHOULD BE ELIMINATING
THESE ARTICLES EVEN FROM THE
LARGER ISSUE.
WE'LL HAVE THE 20 WE VOTED ON
AND THEN ALL THE OTHER
NOMINATIONS AND QUESTION WHETHER
WE SHOULD INCLUDE THESE AT ALL
>> IT'S A QUESTION WHETHER THESE
SHOULD BE ON THE BALLOT FOR
THINGS CONSIDERED AUTISM
ADVANCES.
>> WHY DON'T WE GO TO THE POLL
THEN.
LET'S DO PUT UP THE POLL.
THE QUESTION FOR EACH OF THE
ARTICLES SEPARATELY WHETHER IT'S
SPECIFIC ENOUGH TO ASD WHETHER
WITH WANT TO INCLUDE IT ON THE
BALLOT TO BE INCLUDED ON.
EVERYBODY SHOULD VOTE IF IT
POPPED UP ON YOUR SCREEN IF
YOU'RE ON THE COMMITTEE AND SAY
YES OR NO BECAUSE THEY'RE
DIFFERENT ISSUES PRESENTED.
WHILE WE'RE WAITING FOR RESULTS
LET'S MOVE ON TO QUESTION 2.
THERE WERE A NUMBER OF ARTICLES
ON THE BIOLOGY OF AUTISM.
THE RESULTS ARE MIXED FOR THE
SECOND ARTICLE AND MORE OF A
SIGNIFICANT NO TO THE FIRST.
I WOULD SUGGEST SUSAN BASED ON
THE VOTE IS CLOSE ENOUGH ON
NUMBER TWO AND SHOULD INCLUDE IT
TO BE INCLUSIVE BUT THE FIRST
ONE WE CAN ELIMINATE.
THERE'S A NUMBER OF ADVANCES
HERE MANY WHAT WE MAY TERM BASIC
SCIENCE ADVANCES ADVANCES IN THE
BIOLOGY THAT HELP US UNDERSTAND
THE PROCESSES UNDERLYING IT BUT
NOT YET PRIMED FOR TREATMENT
DEVELOPMENTS.
>> THE NEXT ONE IS QUESTIONS FOR
IS QUESTION FOUR.
WOULD ANYONE LIKE TO MAKE ANY
COMMENTS ABOUT ANY OF THE
ARTICLES NOMINATED IN QUESTION
TWO EITHER FOR TO LOBBY FOR THEM
OR TO LOBBY AGAINST THEM?
>> WE HAVE A NEW SLIDE WITH THE
SPECIFIC QUESTIONS?
I'M SORRY.
>> NOT IN TWO BUT ASKING FOR
QUESTIONS FROM THE NOMINATORS OR
ANYBODY WHO HAS CONCERNS ABOUT
THE ARTICLE NOMINATING QUESTION
TWO.
THE QUESTION ITSELF IS JUST THE
THEMES FROM THE FIRST AND THE
SECOND QUESTION IS ABOUT
BIOLOGY.
WE HAVE NOM NAILINGS OF ARTICLES
THAT SPEAK TO THE BIOLOGY OF
AUTISM.
>> IT'S AN A DOCUMENT LABELLED
2020.
>> I'LL PULL THEM UP IF WE CAN
STOP THE OTHER SHARING.
>> NOW THE QUESTIONS UNDER
QUESTION TWO, BIOLOGY.
THERE'S A NUMBER OF ARTICLES
THAT HAVE TO DO WITH GENES
ASSOCIATED WITH AUTISM AND THEIR
BIOLOGICAL CONSEQUENCES
INCLUDING THIS ONE ON MOTOR
FUNCTION AND THEY TESTED A DRUG
WHICH SUGGEST THE POSSIBILITY OF
A TREATMENT TARGET.
I'M NOT SURE AND MAYBE SOME OF
YOU CAN TALK TO ME ABOUT HOW
IMPORTANT MORT SYSTEMS ARE BUT
THAT'S WHAT THE FOCUS OF THE
STUDY WAS.
THIS HAS TO DO WITH THE
TRAJECTORY OF AUTISM AND
COGNITIVE ABILITY AND ONE OF THE
INTERESTING THINGS FROM THIS
STUDY ALSO NOMINATED BY OUR
FOLKS FROM THE OFFICE OF
RESEARCH AND COORDINATION AT IMH
SHOWED PARTICIPANTS IN SCHOOLS
SHOWED LESS SIGNIFICANT SYMPTOMS
AT 23 YEARS OLD VERSUS THOSE IN
PRIVATE SETTINGS.
I DON'T KNOW HOW CONFIDENT WE
ARE IN THAT.
SAM.
EYE AGREE MOTOR IS CRITICAL AND
VERY IMPORTANT AND PARTICULARLY
TO PEOPLE WHO ARE NON-SPEAKING.
MANY PEOPLE WHO ARE NON-SPEAKING
REPORT HAVING SIGNIFICANT MOTOR
PLANNING CONCERNS AND WE REALLY
NEED TO KNOW MORE ABOUT THE ROLE
OF MOTOR IN AUTISM.
I THINK THAT'S VERY INTERESTING.
I THOUGHT THE SLEEP STUDY WAS
ALSO VERY INTERESTING.
SLEEP IS AN IMPORTANT CONCERN
FOR A LOT OF PEOPLE IN OUR
COMMUNITY AND GETTING AN
UNDERSTANDING OF THE
PHYSIOLOGICAL UNDER PINNINGS OF
SLEEP ONSET ISSUES COULD REALLY
HELP MAYBE LEAD TO BETTER
UNDERSTANDING OF INTERVENTIONS.
I WAS CONFUSED ABOUT THE STUDY
NOT THAT I THINK IT'S A BAD
STUDY.
IT LOOKS LIKE A GREAT STUDY BUT
I DON'T KNOW WHY IT'S IN
QUESTION TWO AND THOUGHT WE
COULD TALK ABOUT THAT.
>> I'M INTO THE SURE WHY IT GOT
CATEGORIZED ON THAT EITHER.
MAYBE THE FOCUS ON COGNITION
ABILITY BUT GOOD POINT.
>> I THINK IT'S AN IMPORTANT
STUDY AND THOUGHT IT WAS WEIRD.
>> IT FITS INTO THE STRATEGIC
PLAN.
WELL, I LIKE IT.
>> THANKS SAM.
I APPRECIATE THE INPUT ON THE
MOTOR ISSUES.
IT'S HELPFUL.
PAUL.
A GENERAL COMMENT ON THIS
CATEGORY AND I'LL JUMP ON THE
BANDWAGON AND I TALKED ABOUT HOW
SENSORY ISSUES ARE IN THE
DIAGNOSTIC CRITERIA AND I THINK
SLEEP IS IMPORTANT THOUGH IT'S
NOT THE DIAGNOSTIC CRITERIA.
I LIKE ALL THE TOPICS.
I TYPICALLY DON'T GET EXCITE
ABOUT THE BROAD SIGNIFICANCE OF
ANY RESEARCH PAPER THAT S ON A
SINGLE GENE ESPECIALLY WHEN THEY
ACCOUNT FOR SMALL FRACTION OF
CASES OF AUTISM AND FNR1 PROJECT
X IT INTERACTS WITH OTHER GENES
IMPLICATED IN THE UNDERLYING
BIOLOGY OF AUTISM BUT IN SINGLE
GENE I'M SKEPTICAL ABOUT.
>> I SHARE YOUR SKEPTICISM ABOUT
THE RELEVANCE OF SINGLE GENES.
I CAN'T ARGUE WITH REGARD TO THE
MICRO-XON1 AND IT CLEARLY
CREATES A SYNDROME WHICH
INCLUDES AUTISM.
INFORMATION HOW IT EXPERTS
AFFECTS ON THE BRAIN CAN SUGGEST
TREATMENT TARGETS AT THE LEAST
WOULD HELP PEOPLE WITH SHANK
THREE MUTATIONS AND HELP OTHERS
AS WELL.
IN GENERAL, I THINK YOU'RE
RIGHT.
A STUDY THAT FOCUSES IN ON ONE
GENE IS OFTEN HAS CHALLENGES.
ANY OTHER COMMENTS WITH THE
PAPERS HERE?
PEOPLE WANT TO FOCUS ON THE
TREATMENT AND MOTOR CONTROL AND
McDUFFY ON SLEEP AND THERE'S A
QUESTION AND THE COHORT THAT'S A
FASCINATING STUDY AND I'LL NOTE
THERE'S ONE ON SEX DIFFERENCES
THAT STUDIED INDIVIDUALS WITH
AUTISM
>> A BRIEF COMMENT ABOUT THE
FACT THERE'S NOMINATIONS IN
THERE FROM OUR OFFICE.
WE WERE TRYING TO HELP JUMP
START THE PROCESS BECAUSE WE
CAME INTO THE YEAR HALF BAY
THROUGH THE YEAR AND SO WE
HELPED FILL IN PLACES WHERE
THERE WERE GAPS BUT ORDINARILY
WE TAKE NOM NATIONS AND FOR 2021
WE TRIED TO FILL IN THE GAPS
WHERE THERE MAY NOT HAVE BEEN
ENOUGH NOMINATIONS.
HAPPY TO STEP BACK AT ANY POINT.
WE'RE JUST TRYING TO HELP OUT.
>> OKAY.
LET'S MOVE ON TO QUESTION THREE.
LET'S ASK IF THERE'S COMMENTS ON
THE NOMINATIONS IN QUESTION
THREE.
HERE WE'RE TALKING ABOUT RISK
FACT ERS WITH ENVIRONMENTAL RISK
FACTORS WE'VE BEEN TRYING TO
PUSH AND THANK OUR COLLEAGUES AT
THE NIH AND RISK FACTORS ON A
NUMBER OF CONDITIONS AND
DISORDER.
THE ARTICLE TALKS ABOUT GENE BY
ENVIRONMENT INTERACTIONS AND
THERE'S ANOTHER ONE HERE AND THE
GENETIC ONE AND ANOTHER ONE I
WAS LOOKING AT.
ANYWAY, I PARTICULARLY LIKE THAT
ONE.
ANY OTHER COMMENTS?
I LIKE THE FIRST ONE THAT LOOKS
AT THE IMPLICATIONS FOR PARENTAL
LINEAGE PRIMARILY BECAUSE I SEE
IT AS AN OPPORTUNITY TO PROVIDE
MORE INTENSIVE PARENTAL SUPPORT
ESPECIALLY IN THE EARLY
INTERVENTION YEARS.
I DO KNOW SPEAKS AS AN AUTISTIC
PARENT TRYING TO COORDINATE
SERVICES AND SUPPORTS WITH
MULTIPLE THERAPY SESSIONS A WEEK
AND DEALING WITH SCHOOL SYSTEMS
WAS SO INCREDIBLY DIFFICULT AND
I HEAR THAT FROM SO MANY PARENTS
BUT AUTISTIC PARENTS QUITE OFTEN
STRUGGLE WITH THE MULTI-TASKING.
I DON'T KNOW, I HAVE SOME
CONCERNS BUT LARGELY THINK
EXAMINING THIS COULD BE HELPFUL.
>> DENA, THIS IS WHY I VALUE THE
INPUT WE GET AND LOOKING AT THIS
AS HO HUM, ANOTHER GENETIC STUDY
BUT YOU'RE POINTING OUT THIS HAS
THE POTENTIAL TO INFLUENCE THE
NEED FOR CARE DELIVERY AND IN
PARTICULAR SITUATIONS AND I
THINK THAT'S A HELPFUL INSIGHT.
THANK YOU.
OTHER COMMENTS OR QUESTIONS?
I'LL STOP SHARING.
I THINK THERE'S SOME QUESTION
AND QUESTIONS ON ARTICLES FROM
QUESTION THREE.
WE DON'T HAVE ANY QUESTION
THREE.
NEXT IS QUESTION FOUR.
>> ALL RIGHT.
>> LET'S GO TO THOSE THEN SINCE
WE HAVE THIS UP.
MOVE TO THE NEXT ONE.
THERE'S TWO ARTICLES IN QUESTION
FO
FOUR.
WE'LL ASK FOR COMMENTS ABOUT
ARTICLES YOU ALL WANTED TO
HEADLINE THAT'S A LITERATURE AND
ONE IS A META-ANALYSIS WE HAVE
NOT INCLUDED OR OCCASIONALLY
INCLUDED META-ANALYSIS REGARDING
INTERVENTIONS TO DRAFT HEALTH
OUTCOMES AND PROJECT AIMED
INTERVENTION.
THE REASONS WHY WE HAVEN'T
GENERALLY INCLUDED THESE IS
BECAUSE THEY'RE TYPICALLY NOT
VERY NOVEL IN THE SENSE THERE'S
A REVIEW OF OLD LITERATURE.
NOW IN THE CASE OF
META-ANALYSIS, WHEN THE
META-ANALYSIS REVEALS A NEW
RESULT OR SOLIDIFIES OUR
INFORMATION OF THE IMPACT OF A
RESULT, THEN WE TENDED TO
INCLUDE IT.
ANY COMMENTS ABOUT THE ARTICLES
PARTICULARLY IF WHOEVER
NOMINATED THEM WANT TO DISCUSS
WHY THEY NOMINATED THEM MIGHT BE
HELPFUL.
>> I PROBABLY -- I DON'T KNOW IF
I WAS THE ONLY ONE BUT I DID
NOMINATE THIS PROJECT AIM.
I UNDERSTAND IT WAS A
META-ANALYSIS AND A SYSTEMATIC
REVIEW.
THIS PARTICULAR ARTICLE AND
THERE'S VAST AMOUNT OF DATA AND
HIGHLIGHTS WHAT SORTS OF
PROXIMAL AND DISTAL FACTORS NEED
MORE ATTENTION WHEN IT COMES TO
AUTISM BEHAVIORAL INTERVENTIONS.
THEY REALLY FOCUS ON THINGS LIKE
PUBLICATION BIAS.
THEY IDENTIFIED A LOT OF ISSUES
THAT SHOULD IN FACT INFLUENCE
THE STRATEGIC PLAN
RECOMMENDATIONS.
THIS PROJECT WAS CONSIDERED
OUTSTANDING BY THE OFFICE OF
SOCIETY FOR AUTISM RESEARCH.
IT WON AN AWARD.
I THINK IT'S BEEN CITED MANY
TIMES AND PEOPLE REFER TO IT
WHEN THEY THINK ABOUT WHAT IS
NEEDED AND WHAT QUESTIONS ARE
STILL RELEVANT.
I NOMINATED IT SO I'M ADVOCATING
TO KEEP IT BUT HAPPY TO DISCUSS.
>> ANYONE ELSE WANT TO DISCUSS
EITHER OF THESE TWO ARTICLES?
IF NOT, JULIE, GO AHEAD.
>> THERE'S REVIEWS UNLESS
THERE'S SOMETHING EXCEPTIONAL
THAT BRINGS SOMETHING BRAND NEW
TO LIGHT WITH HOW THEY LOOK AT
THE DATA BUT I'LL SAY IT WON'T
BE THE CASE 99% OF THE TIME AND
FOR META-ANALYSIS IT SOUNDS LIKE
WHAT SHE DESCRIBES AND I THINK
IT BRINGS NEW INFORMATION FROM
THE STUDIES WE DIDN'T KNOW
BEFORE.
I'M MOST FAMILIAR WITH THE ADULT
LITERATURE AND THERE'S AN
EXCEPTIONAL AMOUNT OF RENEWS
REHASHING RESEARCH ALREADY DONE
AND I WORRY ABOUT ELEVATING
FACTS TO THE LEVEL OF THE NEW
RESEARCH AND SELLING SHORT WHAT
NEEDS TO BE DONE IN SOME DOMAIN.
A LONG WINDED WAY OF SAYING I
AGREE.
>> YOU AGREE -- AND PERSONALLY
ARE AVERAGING MAYBE IT'S NOT
APPROPRIATE BUT HAVE NO PROBLEM
WITH SANDBACK BEING ON THE
BALLOT.
>> THAT'S WHAT I'M SAYING.
>> AND WHILE ELAINE MAKE HER
COMMENT WHY DON'T YOU PUT UP THE
POLL.
>> I DON'T KNOW I'M ADDING
ANYTHING SIGNIFICANT BUT IN LINE
OF SYSTEMIC REVIEWS ARE DONE TO
ASK STUDIES IN AND OF THEMSELVES
AND FOLLOW THE METHODOLOGY AND
GLEAN NEW INSIGHTS.
I THINK JUST BECAUSE IT SAYS
IT'S A SYSTEMATIC REVIEW IN THE
TITLE WE DON'T WANT TO SEEM THAT
IT IS.
WE DO WANT TO MAKE SPACE FOR
USING STATE OF THE ART
METHODOLOGY TO SYNTHESIZE
INFORMATION FROM ACROSS STUDIES.
AS LONG AS WE'RE THOUGHTFUL BIT
I DON'T WANT TO PUT HARD LINES
IN THE SAND.
>> JULIE, YOU HAVE YOUR HAND UP
BUT WENT OFF CAMERA SO I ASSUME
YOU'RE DONE AND DENA.
>> JUST QUICK, I NOMINATED THIS
AND THE REASON WAS A, I DIDN'T
UNDERSTAND YOUR CRITERIA AND B,
BECAUSE OF THE RULE OUTS THEY
HAD IN EXAMINING THE LITERATURE
THIS WAS THIS WAS FOCUSSED ON
AUTISTIC ADULTS AND I WASN'T AN
AUTHOR ON THIS ARTICLE BUT WHEN
YOU DESCRIBE SYSTEMIC REVIEWS
AND THEIR ROLE IN THIS
DETERMINATION AND THE NOVELNESS
I SEE WHERE YOU'RE COMING FROM.
THANKS FOR HEARING ME OUT.
>> IF EVERYONE WOULD ANSWER THE
POLL AND MEANWHILE IF YOU CAN
END THE PRESENTATION AND PUT UP
THE POLL, I'LL GO AHEAD AND
SHARE MY SCREEN AGAIN.
THIS SUGGESTIONS TO ANY OTHERS
THEY'D LIKE IT SEE.
SO HERE'S THE ONES -- THERE'S
PATTERNS AND THE REVIEW WE JUST
MENTIONED.
RANDOMIZED CONTROL TRIAL
FUNCTIONAL COMMUNICATION
TRAINING.
I WASN'T SURE ABOUT THAT BECAUSE
NOT APPARENT TO ME HOW LARGER
GENERALIZABLE AND 38 CHILDREN
THOUGH IT WAS INTERESTING.
HERE'S ONE THAT'S IT'S A MOUSE.
IT'S TREATMENT DEVELOPMENT BUT A
LITTLE BIT EARLY I THINK.
I THOUGHT THIS RODGERS ONE WAS
INTERESTING.
IT WAS A NEGATIVE RESULT IN A
SENSE IN LOOKING AT TREATMENT
INTENSITY INCREASING TREATMENT
INTENSITY DID NOT IMPROVE
PERFORMANCE.
AND ANY OTHER COMMENTS FROM
ANYBODY ON ANY OF THESE
ARTICLES?
>> I AGREE THE INTENSITY IS
IMPORTANT.
>> NO ON THE BENEVITES AND
SANDBANK IN.
DID YOU WANT TO SAY?
>> THIS GOES BACK TO THE LAST
ARTICLE A CENSUS STATEMENT ON
WEIGHT MANAGEMENT.
EXPERT REPRESENTS.
WE AGREE WEIGHT MANAGEMENT IS
SUPER IMPORTANT BUT I WASN'T
SURE IF THAUZ WAS FITTING A
CRITERIA OF WHAT WE'D WANT TO
PUT IN HERE.
>> THAT'S A GOOD POINT UNLESS
THERE'S NEW FINDINGS OR IT'S A
NEW OBSERVATION WE GENERALLY
HAVEN'T, I DON'T THINK.
>> I BELIEVE THAT WAS MAYBE THE
NEXT SLIDE IN THE SLIDES.
SORRY.
I CAN'T REMEMBER WHAT'S ON THE
SLIDES UNTIL I CLICK ON IT.
I THINK THERE MIGHT HAVE BEEN A
COUPLE QUESTIONS FOR MORE
ARTICLES IN THE SECTION.
>> THE POLL KEEPS GETTING IN THE
WAY WHILE WE'RE TRYING TO READ
THE SCREEN.
IN THE ARTICLE I DON'T THINK WE
CAPTURED IN THE DESCRIPTION HERE
THE IMPLICATIONS OF THE AND
PEOPLE WITH DIFFERENT ETHNIC
BACKGROUNDS WHERE THERE'S RACIAL
ETHNIC DISPARITIES AND
ELIGIBILITY IN SPENDING ARE NOT
MOVING INTO RECOGNITION OF THEIR
ELIGIBILITY FOR MEDICARE AND
MEDICAID ENROLLMENT AND THIS IS
EXAMINING THE DISPARITY AND
THERE'S A HUGE GAP AND DISPARITY
IN SPENDING.
I WANTED TO SPEAK TO THAT
BECAUSE I DON'T THINK KE
CAPTURED THAT IN THE
DESCRIPTION.
GIVEN WHAT WE'RE LOOKING AT IN
TERMS OF HEALTH CARE DISPARITIES
I THOUGHT IT WAS TIMELY AT THIS
POINT.
>> THANKS.
I APPRECIATE THAT.
OKAY.
WE'RE GO AHEAD AND MOVE ON TO
QUESTION 5 SERVICES.
>> SHOULD WE GET BACK TO THE
SLIDES?
>> ANY COMMENTS ON ANY OF THESE?
>> I LIKE THE STUDY LOOKING AT
PROJECT SEARCH AND AUTISM
SUPPORTS FOR EMPLOYMENT
OUTCOMES.
MY ONLY CAVEAT WOULD BE THAT I'M
CONCERNED ABOUT SOME BIAS AND
THE FACT THAT PROJECT SEARCH
TENDS TO CHOOSE INDIVIDUALS MOST
LIKELY TO SUCCEED.
THEY'RE NOT OFTEN WORKING WITH
PEOPLE TWO STRUGGLE WITH
EMPLOYMENT SWCH BUT I THINK
LOOKING AT WHETHER PROJECTS ARE
AIDED IN COLLABORATION SUCH THE
PERSON COULD OBTAIN EMPLOYMENT
IS SOMETHING VERY INTERESTING TO
LOOK AT IN TERMS OF TRANSITION.
>> THIS IS A RANDOMIZED CONTROL
TRIAL OF PROJECT SEARCH PLUS ASD
SUPPORTS COMPARED TO WHAT?
>> IT'S NOT CLEAR TO ME WHAT THE
COMPARISON GROUP GOT.
DOES ANYONE KNOW?
AN OTHER COMMENTS ABOUT
ANYTHING?
>> IT SAYS AT THE VERY END.
THIS IS AN IMPROVEMENT OVER
COMMUNITY BASED TRAINING
PROGRAMS.
I DON'T KNOW IF THAT WAS THE
CONTROL BUT THAT'S WHAT THEY
WERE COMPARING TO.
>> IN THE MEANTIME I'LL STOP
SHARING AND WE CAN GO BACK TO
THE QUESTIONS NOW IF WE CAN GO
BACK TO THE ONES WE HAD
QUESTIONS ABOUT.
>> WE NEED THE NEXT SLIDE.
>> THE SECOND ONE HERE OR THE
SECOND SLIDE IS THE WEIGHT
MANAGEMENT STUDY.
>> LET'S MOVE ON TO THE NEXT ONE
BECAUSE I THINK WE PRETTY MUCH
DECIDED THAT ONE.
>> THAT'S DECIDED?
OKAY.
>> THERE'S ONE A SAMPLE SIZE ON
UNDOCUMENTED MEXICAN MOTHERS OF
CHILDREN WITH AUTISM NAVIGATING
THE HEALTH CARE SYSTEM.
I SPOKEN IN THE PAST ABOUT THE
IMPORTANCE OF NOT INCLUDING
ARTICLES OF SMALL SAMPLE SIZE
AND THIS VEESEEMS TO MEET THAT.
ANY OTHER QUESTIONS OR COMMENTS
ABOUT THIS PARTICULAR ARTICLE?
>> JOSH, I WOULD REITERATE MY
CONCERN ABOUT NOT EXAMINING
QUALITATIVE RESEARCH AS A
FOUNDATION TO BUILD MORE LARGER
SAMPLE SIZE RESEARCH UPON.
WE RECOGNIZE IT AS AN INITIAL
STEP BUT MARKING IT IN VIM OF
ADVANCES CAN BE PROBLEMATIC.
>> ANOTHER FACTOR IS YOU'RE
LIKELY GOING HAVE A SMALL SAMPLE
SIZE WITH THAT TYPE OF
POPULATION.
I'M NOT FAMILIAR WITH THE
RESEARCH SO I CAN'T SPEAK TO THE
CONTRIBUTIONS OF THE RESEARCH
ITSELF BUT I DO THINK WE HAVE TO
FACTOR IN THE FACT THAT IT'S
GOING TO BE A SMALL SAMPLE
BECAUSE I DON'T KNOW HOW MANY
ANOTHERS THAT FIT THAT CRITERIA
WOULD COME FORWARD IN RESEARCH.
>> VERY GOOD POINT.
>> GO BACK ONE.
>> GO FORWARD.
ONE MORE BACK.
IS THERE A POLL ASSOCIATED WITH
THAT ONE, SUSAN?
>> GIVEN THE COMMENTS YOU JUST
HEARD OF YOU THINK YOU THINK
THEY SHOULD BE INCLUDED IN THE
LIST OF NOMINATIONS.
NOT THAT YOU'RE VOTING FOR BUT
YOU THINK IT SHOULD BE ON THE
BALLOT.
TREATMENT CONDITION, CONTROL
CONDITION.
IN THE STUDY WHERE WE ARE
STUDYING THE AFFECTS OF THE
PROJECT SEARCH PLUS ASD SUPPORTS
THE CONTROL WAS INDEED TREATMENT
AS USUAL RECEIVED THE
MODIFICATIONS STIPULATED IN THE
IEP.
THEN SOME RECEIVED SOME
COMMUNITY BASED EMPLOYMENT BUT
THE CONTROL IS AN IDEA AND JUST
GIVING YOU THE INFORMATION.
DO WE HAVE THE RESULTS FROM THE
POLL ON QUESTION FIVE ON THIS
ARTICLE?
I WOULD BE INCLINED TO TAKE IT
OFF.
MOVING ON TO QUESTION 6.
LIFE SPAN ISSUES AND THERE WERE
AT LEAST TWO.
ONE IS ON ACCESS TO EDUCATION
AND THE FIRST WAS AN INFORMATION
GATHERING ACTIVITY AKIN TO I
GUESS A CALL FATIVE STUDY
DEFINING PRIORITIES TO GUIDING
RESEARCH TYPICALLY NOT INCLUDED
IN THOSE THINGS IN THE PAST AND
THE SECOND ONE IS ON EDUCATIONAL
HEALTH CARE SERVICES FOR
INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENT DISABILITIES
WRIT LARGE THOUGH IT'S ABOUT
COVID-19.
ANY QUESTIONS OR COMMENTS ABOUT
THOSE TWO ARTICLES AND WHETHER
WE SHOULD INCLUDE THEM OR NOT?
WHILE THE POLLS ARE UP IF YOU
CAN STOP SHARING AND SHARE THE
ADOBE ACROBAT AGAIN?
PEOPLE CAN ANSWER THE POLL
QUESTION IF THEY FEEL LIKE THEY
WANT TO.
>> THERE'S A NUMBER OF TRENDS
AND SUPPLEMENTAL SECURITY AND
PAYMENTS TO ADULTS WITH AUTISM
AND THE ARTICLE ON GENDER AND
MINORITIES AND THERE'S A NEED WE
NEED TO KNOW MORE ABOUT.
THE COVID IMPACT ONE THOUGH WAS
INTERESTING BUT AGAIN DOESN'T
FOCUS ON AUTISM.
DEFINING POSITIVE OUTCOMES IN
MORE OR LESS COGNITIVELY ABLE
AUTISTIC ADULTS.
THE ADULT FOCUS WAS INTERESTING
AND TO ME SUGGESTED A POTENTIAL
TO POINT TO TREATMENT TARGETS
FOR FUNCTIONAL TREATMENTS.
QUALITATIVE STUDY AND PSYCH
METRIC TESTING OF SELF-EFFICACY
SCALE.
ANY COMMENTS.
JALYNN YOU WANTED TO COMMENT?
>> YOU HAVE TWO DIFFERENT AREAS
IN THE IT LITERATURE THAT CAME
OUT ABOUT ARTICLES AND
ADVANCEMENTS AND THEN THIS
LISTING HERE.
PERHAPS I DIDN'T SEE HOW THIS
MAY BE RELATED TO SOMETHING.
IT IS SOMETHING THAT MADISON
HOUSE HAS BEEN WORKING ON WITH
FIRST PLACE ARIZONA WATTS
COLLEGE AND THE MORE IS
INSTITUTE OF PUBLIC HEALTH IN
ARIZONA ABOUT HOUSING.
BECAUSE SERVICES THIS IS AN
ADULT AREA WHERE THERE'S FEW
SERVICES.
WHEN YOU START TO TALK ABOUT
THIS AND THIS IS ON THE OPENING
DOOR STUDY.
>> ARE YOU TALKING ABOUT ONE OF
THESE NOMINATIONS?
>> YES AND NO.
BECAUSE THIS WAS NOT NOMINATED
BUT I'M HAVING A QUESTION HOW
THINGS LIKE THIS CAN BE PUT INTO
SOMETHING OF THIS NATURE.
I THINK THIS WAS MY FAULT ON
THIS AND HAD NOT BEEN CLEAR TO
ME.
THERE'S A LOT OF RESEARCH IN
THIS AND IT'S MOVING SOMETHING
FORWARD BY LEAPS AND BOUNDS WITH
WHAT HAPPENS TO BE IN THIS
PUBLICATION.
>> YOU SHOULD FEEL FREE TO
NOMINATE A PUBLICATION FOR THE
YEAR IT WAS PUBLISHED AND NOT
CLEAR WHETHER THE PUBLICATION
YOU'RE TALKING ABOUT WHETHER WE
AS A GROUP ACCEPT IT BUT I DON'T
THINK WE PRECONCEIVED NOTIONS I
DON'T KNOW IF IT'S PUBLISHED WE
DON'T HAVE PRECONCEIVED NOTIONS
ABOUT IT.
YOU HEARD US DEBATING THE
INCLUSION NOT THE IMPORTANCE BUT
THE INCLUSION OF DIFFERENT KINDS
OF REVIEW SREVIEWS AND I'M DOING
INJUSTICE TO A LARGER DISCUSSION
IF IT BRINGS UP NEW AND
IMPORTANT IDEAS AND NOVEL
CONCLUSIONS WE MIGHT CONSIDER.
I DON'T THINK WE CAN CONSIDER IT
IN THE CONTEXT OF THIS
DISCUSSION UNLESS IT WAS ALREADY
NOMINATED.
>> ALL RIGHT.
I'M HOPING IT WILL OPEN UP THE
CONVERSATION FOR OVER NOMINATION
S
>> I WANTED TO TALK ABOUT THE
COMPARATIVE STUDY OF AUTISTIC
WOMEN.
IT HAD A SAMPLE SIZE OF 355
AUTISTIC WOMEN.
THE ORIGINAL SAMPLE SIZE IS WELL
OVER 1,000 PARTICIPANTS.
AND WHITTLED DOWN AND 50% OF
THAT NUMBER APPROXIMATELY WERE
NON-DISABLED PARENTS AND AGAIN
GOING BACK TO MY PREVIOUS
COMMENT ABOUT SERVICE DELIVERY.
THIS COULD GIVE US A GREAT BIT
OF INSIGHT AS TO WHERE AUTISTIC
MOTHERS MAY NEED EXTRA SUPPORT
OR WHERE THEY MAY ACTUALLY HAVE
A NEURODIVERSE IN PARENTING.
AND THE ONE IN REGARD TO SOCIAL
SECURITY PAYMENTS IF YOU GET THE
MAXIMUM AMOUNT OF MONEY UNDER
SSA YOU'RE STILL $2500 BELOW THE
FEDERAL POVERTY LINE AND
ANYTHING WE CAN DO TO DO LOOK AT
THAT IS AN ASSET FOR OUR
POPULATION.
>> I SEE TWO THAT ARE METHODS
FOCUSSED AND LET PEOPLE VOTE
BECAUSE I THINK I'M SUPER
EXCITED TO SEE WHAT COMES OF
THIS METHOD DOWN THE ROAD AND
THE CONCLUSIONS WERE THIS MAY
WORK WITH SOME MODIFICATIONS.
THIS IS A STUDY THAT TESTS THE
FEASIBILITY OF A METHOD.
AND THE OTHER THAT FITS IN THE
SAME IDEA AND THERE'S TESTING OF
THE MEASURE DEVELOPMENT AND I
THINK THIS IS GOING TO BE A
SUPER HELPFUL TOOL.
TO THE RESULTS OF THIS
PARTICULAR STUDY WITH HEALTH
CARE PROFESSIONALS DON'T REALLY
KNOW HOW TO TREAT ADULTS WITH
AUTISM AND A FEEL AND I FEEL WE
HAVE A GOOD HANDLE.
THOSE WERE THE TWO FROM QUESTION
SIX THE STUDIES I'M MOST
FAMILIAR WITH I'M LESS CONVINCED
BY.
>> THANK YOU, JULIE.
I APPRECIATE THE COMMENTS.
JUST NOTE THE POLL ARGUES
AGAINST THE BENEVITEZ.
WE'LL KEEP IT IN FOR NOW.
OKAY, LAST QUESTION.
WE DON'T HAVE SPECIFIC
APPLICATIONS TO CALL OUT BUT
INFRASTRUCTURE AND SURVEILLANCE.
THREES A COUPLE ARTICLES
INCLUDING ONE THAT CHARACTERIZE
THE DATA WE HEARD ABOUT TODAY.
THERE'S THE LATEST DATA ON
SURVEILLANCE.
THERE'S A COUPLE OTHER STUDIES
ABOUT A STATEWIDE REGISTRY FOR
EXAMPLE.
THIS POINTS TO HIGH COMORBID
MEDICAL AND PSYCHIATRIC
CONDITIONS.
IT'S WELL QUANTIFIED.
ANY COMMENTS ABOUT ANY OF THESE
SURVEILLANCE ONES?
>> I WANT TO CHAMPION THE DIETZ
WITH ADULTS WITH SPECTRUM
DISORDER.
IT'S A GOOD STUDY.
IT'S CRITICAL TO MY DISSERTATION
RIGHT NOW.
IF YOU'RE LOOKING AT THE
ADVOCACY TOOLS FOR PEOPLE OVER
18 IT'S WELL DONE.
I THINK WE'RE STILL MASSIVELY
MISSING A LOT OF PEOPLE BUT
SOMETHING TO WORK WITH.
>> I THINK THAT'S IT THEN.
YOU'VE HEARD ALL THE ITEMS
PEOPLE CARE TO DISCUSS.
JUNES, YOU CAN CLARIFY BUT WE'LL
BE SOINTHD E-MAILS -- SENDING
OUT E-MAILS FOR PEOPLE TO VOTE
WITH SOME ARTICLE ELIMINATED AND
THE OF THE OF THEM IN THERE.
I ASK YOU STRONGLY WORK TO TRY
TO SPREAD YOUR VOTES AROUND.
TO TRY TO VOTE FOR ONE TO THREE
IN EACH CATEGORY, IF YOU CAN.
IF YOU FEEL LIKE NO, THERE
AREN'T ANY IN ANY CATEGORY YOU
WANT TO VOTE FOR, BY ALL MEANS
I'M NOT GOING TO MAKE YOU BUT
WE'LL TRY TO MAKE SURE WE
HIGHLIGHT THE ADVANCES IN EACH
AREA WITH ONE OR TWO ARTICLES.
WE ENCOURAGE TO YOU SPREAD YOUR
VOTES AROUND.
SAM, DID YOU HAVE AN OVER
ARCHING QUESTION OR COMMENTS ON
THIS PROCESS?
>> SORRY, ALYCIA.
>> I SAW A COUPLE FROM DENA AND
TWO FROM ME AND I KNOW I
SUBMITTED 18.
I DON'T KNOW IF NAY WERE ALL
EXCLUDED OR WHAT HAPPENED.
>> MY GUESS IS THE OTHERS WERE
FOR 2021
>> THE SLIDE SAYS 2021.
>> THIS IS JUST TALKING ABOUT
THE NEXT VERSION BUT WITH THE
2020 WE'LL BE SENDING OUT A
BALLOT.
YOU'LL GET TO VOTE AND THEN OUR
TEAM WILL BE WORKING ON A DRAFT
MUCH THE FINAL DOCUMENT AND
WE'LL SHARE MORE IN APRIL.
FOR THE 2021 WE ALREADY SOLICIT
THE NOMINATIONS AND WE'LL TALK
ABOUT THEM AT THE APRIL MEETING
BASICALLY AND THEN PROBABLY DO
THE BALLOT AFTER THE APRIL
MEETING FOR THE 2021 TO CATCH
UP.
WHAT AND THE NOMINATIONS ARE NOT
COMPLETE FROM WHAT PEOPLE
SUBMITTED.
>> IT'S COMPLETE.
I BELIEVE IT'S COMPLETE.
WE'LL BE TALKING ABOUT IT NEXT
TIME.
WE DIDN'T WANT TO CONFUSE PEOPLE
AND DIDN'T HAVE TIME TO TALK
ABOUT THAT.
>> I SUBMITTED 18 ARTICLES AND
SEE TWO ON HERE.
THERE'S ONLY THREE.
>> ON THE 2021 DOCUMENT NOT THE
ONE JUST REVIEWED?
>> NO, 2021.
>> WE'RE ALSO COLLECTING FOR
2022.
IT'S GETTING CONFUSING.
WE'RE HOPING TO GET THE OTHER
DOCUMENTS DONE TO WORK ONE YEAR
AT A TIME.
>> CHECK WITH OARC STAFF.
LET'S MAKE SURE WE'RE NOT LOSING
ANY.
SORRY, JALEN, DID YOU HAVE
ANOTHER COMMENT TO MAKE?
>> THE PUBLICATION AUTO I'VE
BEEN TALKING ABOUT IS 20 AND I
WAS GETTING CONFUSED BETWEEN THE
YEARS AS WELL.
TRIGS TO FIGURE OUT AND SO IT
QUALIFIES TO END WITH THIS.
YES, JALYNN BUT UNFORTUNATELY
IT'S TOO LATE TO TAKE THE
NOMINATION.
>> I BELIEVE THE DOCUMENT YOU'RE
TALKING ABOUT IS A REPORT AND
USUALLY DON'T INCLUDE REPORTS
FROM AGENCIES AND ORGANIZATIONS.
>> I WOULD FEEL STRONGLY IT HAS
TO BE PEER REVIEWED.
IT DOESN'T MEAN YOUR
ORGANIZATION SUBMITS TO PUBLIC
IN A JOURNAL THAT WOULD BE
ACCEPTABLE BUT WOULD HAVE TO BE
PEER REVIEWED.
>> THERE'S OTHER PLACES TO
HIGHLIGHT THINGS AND THERE'S A
PLACE TO HIGHLIGHT DIFFERENT
THINGS THAT MAY NOT NECESSARILY
FIT IN THIS CATEGORY.
I ENCOURAGE TO BRING IT FORWARD
THAT MAY MERIT MORE FROM ANOTHER
COMMITTEE.
>> THERE'S RELEVANT THINGS.
THANK YOU VERY MUCH.
>> WHEN WE'RE TAKING ON THE NEW
TASK AND HAVE SO MANY NEW
MEMBERS TO THE IACC, IF WE CAN
SCHEDULE A BRIEF ORIENTATION, I
MEAN, THERE WAS CONFUSION AMONG
SOME OF THE MEMBERS.
I FEEL THERE'S SOME MEMBERS WHO
AREN'T SURE WHAT THEY'RE CHARGED
TO DO AND IF WE CAN SCHEDULE AN
OPTIONAL TIME FOR PEOPLE TO BE
ORIENTED THAT MIGHT BE HELPFUL.
>> SURE.
>> AND MAYBE DO THAT BEFORE
APRIL MEETING FOR THE 2021
SUMMARY OF ADVANCES SO PEOPLE
KNOW WHAT TO EXPECT.
>> I THINK WILL PARTICIPATE MORE
AND WILL REALLY UNDERSTAND WHAT
THEY'RE TASK IS SO THANK YOU.
>> OKAY.
NEXT UP IN THE FINAL ORDER OF
BUSINESS WE TRIED TO ALLOW
PEOPLE TO BRING UPDATES TO THE
COMMITTEE AND COMMUNITY THEY
HAVE.
WE REALLY ONLY HAVE TWO MINUTES
BEFORE WE'RE SUPPOSED TO
ADJOURN.
I'LL SEE IF THERE'S UPDATES TO
GIVE.
ALISON, YOUR HAND IS RAISED.
>> DIRECTING PEOPLE TO THE
WEBSITE AND WANTED TO MENTION
THE GRANT PROGRAM HAS OPENED AND
THE APPLICATIONS ARE DUE BY
FEBRUARY 25th FOR GRADUATE
STUDENTS, $10,000 STIPEND AND
PLEASE, THAT'S NOT MY DOG, I
HAVE A CAT.
WE HAD A STATE OF THE SCIENCE
MEETING WHERE WE LOOKED AT
LESSONS FROM SAA DEMONSTRATIONS.
IT'S AVAILABLE FOR FREE DOWNLOAD
AND ALL THE THINGS THAT WENT ON
AND DISCUSSIONS AND SOCIAL
POLICY RESEARCHERS.
IF YOU GO TO THE ROUND ROBIN
DOCUMENT YOU CAN DOWNLOAD THE
BOOK FOR FREE.
THANK YOU.
>> THERE'S A QUESTION IN THE
CHAT AND MAYBE WE'RE PROVIDING
IT AND THEY JUST DON'T KNOW.
THE QUESTIONS FROM LINDSAY, IS
THERE A WAY TO RECEIVE ACCEPT
THE SUMMARY OF ADVANCES IF WE'RE
NOT ALREADY DOING LET'S MAKE
SURE WE PROVIDE THAT.
>> IN THE PAST WE'VE BEEN ABLE
TO PROVIDE ZIP FILES TO PEOPLE A
LOT OF THIS IS JOURNALS.
>> MANY ON THE CALL DON'T HAVE
ACCESS TO THE PAYWALL SO LET'S
MAKE SURE THAT HAPPENS BEFORE
THE DISCUSSION.
THANK YOU FOR BRINGING THAT UP.
ALYCIA YOU GET THE LAST ROUND
ROBIN.
>> THANK YOU.
THE AUTISM SCIENCE DAY OF
LEARNING WILL BE HYBRID THIS
YEAR.
LAST YEAR WAS ALL VIRTUAL AND BE
MARCH 30.
SO BEFORE OUR NEXT IACC MEETING
WHICH IS WHY I WANTED TO MENTION
IT.
ACTUALLY ON THE DOCKET WILL BE A
10 MINUTE SUMMARY OF THE TALK
MATT MAENNER MADE AND WE'RE
BACK ON TRACK AFTER COVID
REVIEWING OUR NEW POST
UNDERGRADUATE MECHANISM PRE-DOCS
AND IT'S RESTRICTED TO
INDIVIDUALS FROM UNDERGRADUATES
FROM CERTAIN GROUPS AND THOSE
STUDYING RACIAL AND ETHNIC
DISPARITIES IN AUTISM.
>> ALSO, I WANTED TO ADD THE
NSAR COMMUNITY COLLABORATORS
REQUEST OUR HELP WANTED AD PAGE
AS WE'RE SET TO LAUNCH THURSDAY
THE 20th.
IF PEOPLE ARE LOOKING TO FIND
PARTICIPANTS IN RESEARCH OR
COLLABORATORS THEY CAN FIND THEM
ON THE ONE PAGE.
IT MAY TAKE US A WHILE TO
POPULATE BUT IT WILL BE
HAPPENING THIS WEEK.
THANK YOU.
>> THANK YOU.
I'LL POINT EVERYONE LISTENING TO
THE IACC WEBSITE WHERE THERE'S A
LONG DOCUMENT WITH LOTS OF
ANNOUNCEMENTS UNDER THIS
MEETING'S LINK.
THERE'S INTERESTING STUFF
GRANTS, DEADLINE, INFORMATION,
WEBSITES.
LOTS OF STUFF ON THERE.
NEXT UP WE WANT TIME TO THANK
THE STAFF AND OTHER FOLKS.
THIS IS A GREAT GROUP AND
THEY'VE DONE A LOT TO GET THIS
MEETING UP AND RUNNING AND TO
MAKE IT HAPPEN AS WELL AS OUR
CONTRACTORS WOULD HAVE BEEN
HELPING OUT WITH THE TECHNOLOGY.
I WANT TO THANK ALL OF THEM AND
THEY ARE NOT ONLY RESPONSIBLE
FOR PUTTING THE MEETING ON AND
TAKING THE ADVICE INTO ACTION
AND LOOK FOR IMPROVEMENTS ALONG
THE WAY.
THE NEXT MEETING APRIL 13 AND
14.
WE TRIED TO SPLIT TODAY'S UP IN
TWO.
WE COULDN'T BUT WE'LL DO THIS IN
TWO SEGMENTS NEXT TIME BECAUSE
IT'S SO MUCH EASIER AND LESS
EXHAUSTING.
I DON'T KNOW ABOUT YOU BUT I'M
PRETTY TIRED AT THE END OF THE
DAY AND ONE SPECIAL NOTE, I
APPRECIATE AS OTHERS HAVE SAID
THE PASSION AND BACK AND FORTH
ON A NUMBER OF ISSUES.
IT WON'T BE THE LAST WORD ON
THOSE ISSUES AND MORE BUT I
APPRECIATE THE RESPECT WE ALL
GAVE EACH OTHER AND THE
OPPORTUNITY TO HEAR ALL THESE
DIFFERENT VIEW POINTS AND WE
WILL GET TO KNOW EACH OTHER MORE
OVER TIME AND LEARN EVEN MORE
HOW TO LISTEN TO EACH OTHER AND
MAKE SURE DIFFERENT VIEW POINTS
ARE REPRESENTED.
THANK YOU ALL FOR YOUR
CONTRIBUTIONS AND TO THOSE
FOLLOWING THROUGH THE VIDEOCAST
ON THE WEB, THANK YOU FOR
JOINING US AS WELL AND THANK YOU
FOR THE WORK YOU DO ON BEHALF OF
COMMUNITIES AND INDIVIDUALS
AFFECTED BY AUTISM.
THANK YOU ALL.
>> THANK YOU, EVERYONE.
BYE, WE'LL BE IN TOUCH.