>>WELCOME TO
DAY TWO NOW OF OUR IACC APRIL
MEETING.
I WANT TO THANK ALL THE
COMMITTEE MEMBERS FOR THEIR HARD
WORK AND PRODUCTIVE DISCUSSIONS
WE HAD YESTERDAY AND THANK THEM
IN ADVANCE FOR THEIR CONTINUED
WORK TODAY.
I ALSO WANT TO THANK MEMBERS OF
THE PUBLIC WHO ARE FOLLOWING US
ON THE NIH VIDEOCAST NETWORK.
PLEASE NOTE THAT WE'VE UPDATED
OUR AGENDA FOR TODAY.
YOU CAN FIND THESE UPDATES ON
THE IACC WEBSITE.
WE WILL START WITH OUR PUBLIC
COMMENT AND HEAR PRESENTATIONS
ON THE TOPIC OF DIVERSE
COMMUNICATION NEEDS.
FOLLOWED BY A DISCUSSION OF THAT
TOPIC.
AFTER THE PANEL AND DISCUSSION,
WE WILL RETURN TO OUR SUMMARY OF
EVENTS WE DIDN'T FINISH
YESTERDAY AND FINISH WITH
ROUNDTABLE UPDATES AND CLOSING
REMARKS.
NOW WE'LL TURN IT OVER TO THE
PUBLIC COMMENT SECTION AND TURN
IT OVER TO SUSSAN -- SUSAN
DANIELS TO RUN THE PUBLIC
COMMENT SESSION.
TAKE IT OVER.
>> THANK YOU, JOSH.
WE'LL START THE ORAL COMMENT
SESSION.
SO IT'S IN THREE PARTS.
WE'RE GOING TO FIRST HEAR THE
ORAL COMMENTS AND THEN I'LL
SHARE WITH YOU THE WRITTEN
COMMENTS THAT CAME IN AND THEN
WE'RE GOING HAVE A DISCUSSION.
THE ORDER IS DR. NICOLE SIMON,
STEVIE MAYS, LISA MORGAN, BOB
WELLS AND DR. EDLYN PENA.
DR. SIMON, YOU MAY BEGIN.
WELCOME.
>> FEEL FREE TO TURN ON YOUR
CAMERA, IF YOU'D LIKE.
>> THE CAMERA'S NOT GOING ON.
IT SAYS UNABLE TO START VIDEO.
>> WE MIGHT BE ABLE TO HELP YOU
WITH THAT.
STILL SAYS IT CAN'T START VIDEO.
CAN YOU HEAR ME?
>> YES, WE CAN HEAR YOU SO
PLEASE GO AHEAD.
THANK YOU.
>> FAILURE OF LANGUAGE
DEVELOPMENT IS THE MOST
DISTURBING CONCERN OF PARENTS
WHO SEEK HELP FOR A CHILD AND
SADLY THEY ARE OFTEN GIVEN A
DIAGNOSIS OF AUTISM.
DIFFICULTY LEARNING TO SPEAK IS
NOT A SIGN THAT IS EVER MISSED.
LANGUAGE IS A DEFINING FEATURE
OF THE HUMAN SPECIES.
SOCIAL DEVELOPMENT CANNOT
ADVANCE FAR WITHOUT LANGUAGE.
IN OCTOBER 1969, I READ THE
ARTICLE BY WILLIAM WENDELL IN
SCIENTIFIC AMERICAN ON ASPHYXIA
AT BIRTH AND A BURST INTO TEARS.
MY SWEET AUTISTIC SON, CONRAD,
RAN TO THE KLEENEX BOX AND
BROUGHT ME A TISSUE.
THEY DESCRIBED DAMAGE OF THE
AUDITORY OF PATHWAY OF MONKEYS
SUBJECTED ONLY SIX TO EIGHT
MINUTES OF ASPHYXIA AT BIRTH.
CONRAD REQUIRED RESUSCITATION AT
BIRTH AND THEN DISPLAYED SEVERE
JUANDICE DURING THE FIRST WEEK
OF LIFE.
CONRAD'S DEVELOPMENTAL
MILESTONES WERE ALL RIGHT ON
TIME AND HE BEGAN TO SPEAK NEAR
THE END OF HIS FIRST YEAR.
OUR RELIEF WAS SHORT LIVED.
IT WAS CONRAD'S NURSERY SCHOOL
TEACHER WHO SUGGESTED HE BE
EVALUATED BY A PSYCHIATRIST.
CONRAD'S SPEECH WAS CLEAR WITH
GOOD ARTICULATION BUT USED THE
PRONOUN YOU INSTEAD OF I OR ME.
AUTISM WAS A DIAGNOSIS HE WAS
GIVEN SHORTLY BEFORE HIS THIRD
BIRTHDAY.
I HOPE MEMBERS OF THE COMMITTEE
WILL DISCUSS MY COMMENTS ON
LANGUAGE DISORDER.
THANK YOU.
>> THANK YOU SO MUCH, DR. SIMON
FOR SHARING THAT COMMENT WITH
US.
THERE YOU ARE.
WE CAN ALL SEE YOU.
THANK YOU SO MUCH.
>> I WAS READING MY PAPER.
I DIDN'T SEE THE SIGN.
>> IT'S NOT A PROBLEM.
THANK YOU VERY MUCH.
NEXT WE WILL GO TO STEVIE MAYS.
>> THANK YOU, DR. DANIELS.
>> MY NAME IS STEVIE MAYS I WORK
FOR AN ACTIVIST WORK.
I PREVIOUSLY WORKED AS A
BEHAVIOR TECHNICIAN.
A THERAPIST IN THE APPLIED
BEHAVIOR ANALYSIS FIELD, AVA FOR
FOUR YEARS.
DURING THAT TIME, I FOUND THAT
THE BEHAVIOR ANALYSIS
CERTIFICATION BOARD, BACB
DEMONSTRATE POOR ETHICAL
RESPONSIBILITY OF THE PRACTICE
OF STUDENTS' ACCESS TO
APPROPRIATE MODALITIES OF
COMMUNICATION.
I BELIEVE CHILDREN DESERVE
ACCESS TO LANGUAGE FOR THE
COMMUNICATION METHOD BEST FOR
THEIR NEEDS BUT HERE I WILL
FOCUS ON THE VACB'S LACK OF
RESEARCH AND EDUCATION FOR THE
USE OF AUGMENTATIVE COMMUNING.
IT REFERS TO A METHOD OF
COMMUNICATION THAT DOES NOT RELY
ON SPOKEN LANGUAGE OR
VERBALIZATION.
THIS MAY INCLUDE SIGN LANGUAGES,
USING OF GESTURES, PICTURE
BOARDS OR DEVICES DESIGNED TO
ASSIST INDIVIDUALS THAT MAY NOT
BE ABLE TO COMMUNICATE USING
SPEECH.
I ULTIMATELY LEFT THE FIELD OF
AVA AFTER MY FOUR YEARS.
I SAW A PATTERN OF STUDENTS
WORKING IN THERAPY FOR YEARS AND
NOT MAKING ANY SUBSTANTIAL GAINS
IN VERBAL COMMUNICATION AND YET
THE PROGRAM FORCED THESE
CHILDREN TO CONTINUE TO RELY
PRIMARILY ON VERBAL
COMMUNICATION GOALS WITH SUBPAR
AAC EDUCATION.
ACCORDING TO AUTISTIC
SELF-ADVOCACY NETWORK, ASAN,
ONE-THIRD OF AUTISTIC PEOPLE
FALL UNDER THE CATEGORY OF
NON-SPEAKING AND WE NEED AAC TO
SUPPORT OR SUPPLEMENT THEIR
COMMUNICATION.
THE AUTISTIC STUDENTS HAVE A
DIFFERENCE IN THEIR BRAIN-BODY
CONNECTION AFFECTS CONTROL.
WHEN MUSCLE CONTROL IS MINIMIZED
THE RESULTING BEHAVIORS ARE
CONSIDERED AN INHERENT TRAIT OF
AUTISM.
THIS DIFFERENCE IN MUSCLE
CONTROL IS ALSO SEEN IN USE OF
VOICE AND OFTEN TREATED AS A
BEHAVIORAL ISSUE IN AVA AND NOT
AN ACCEPTED DIFFERENCE.
AN AVA PRACTICES, CHILDREN WHO
HAVE SOME VERBAL CAPACITY ARE
FORCED TO PRIORITIZE THEIR
LIMITED VERBAL COMMUNICATION
WHEN THEY COULD HAVE FULL RANGE
OF COMMUNICATION IF
SIMULTANEOUSLY PROVIDED ACCESS
TO AAC TEACHINGS.
I CALLED A FRIEND WHO'S A
REGISTERED BOARD CERTIFIED
BEHAVIOR ANALYST, BCBA.
THE TRAINED AND CERTIFIED -- WHO
CERTIFIES THERAPISTS IN AVA
THERAPY AND SAID I HAVE TO WORK
WITHIN MY EDUCATION BUT I HAVE
SEEN CHILDREN MAKE MAJOR
COMMUNICATION GAINS WHEN GIVEN
ACCESS TO AAC BOTH IN VERBAL,
VOCAL IN PROMOTE AND GAIN AAC.
HOWEVER, THE BACB DOES NOT HAVE
CURRICULUM AND TRAINING ON AAC.
I HAVE TRIED TO MIMIC WHAT
SPEECH PATHOLOGISTS DO BUT HAVE
TO WORK WITHIN MY TRAINING AND
THERE'S LITTLE AAC TRAINING AND
WISH I HAD ACCESS TO MORE.
IF THE BACB WISHES TO SHOW A
CONSCIOUS EFFORT TOWARD ETHICAL
AND MORAL RESPONSIBE IBLIBLE PRACTICES
THEY NEED TO SHIFT TO AAC
PRACTICES WHEN PROVIDING ACCESS
AND EDUCATION AND NOT ONLY BY
TRAINING THERAPISTS BUT LOOKING
AT THE BENEFITS FOR AACUs WHEN
STUDENTS WHO SHOW LITTLE TO KNOW
PROGRESS OF PREVIOUS
INTERVENTION EFFORTS.
A LONG-TERM STUDY COULD BE DONE
TO EXAMINE THE FUNCTIONAL
COMMUNICATION OUTCOMES OF
STUDENTS WHO OTHERWISE ARE NOT
SHOWING IMPROVEMENTS IN
COMMUNICATION GOALS.
HAVING WORKED DIRECTLY WITH
YOUNG ADULT USERS THEY HAVE
EXPRESSED ACCESS TO AAC HAS
OPENED THE WORLD TO THEM AND A
BELIEVE ALL STUDENTS SHOULD HAVE
ACCESS TO AAC EDUCATION WHEN
BENEFICIAL.
THANK YOU.
>> THANK YOU, STEVIE FOR YOUR
COMMENTS AND FOR BEING HERE.
NEXT WE'LL HEAR FROM LISA
MORGAN.
WELCOME.
>> THANK YOU.
AS AN AUTISTIC SELF-ADVOCATE
DIAGNOSED AT 48 YEARS OLD, I
ROUTINELY EXPERIENCE PEOPLE WHO
DO NOT UNDERSTAND WHAT IT'S LIKE
TO LIVE WITH AUTISM BOTH IN
PROFESSIONAL AND PERSONAL
SITUATIONS YET THESE PEOPLE ARE
STILL CONSIDERED TO BE THE
AUTHORITIES ON AUTISM AND
AUTISTIC PEOPLE.
WHILE AUTISTIC PEOPLE HAVE BEEN
INVITED TO THE CONVERSATION NOW
MORE A DAYS, I ALSO STRONGLY
FEEL WE'RE NOT BEING TAKEN
SERIOUSLY.
I BELIEVE BEING GIVEN AN
INVITATION TO JOIN IN THE
CONVERSATION ENDS THERE WITH US
JUST SITTING AT THE PROVERBIAL
TABLE BUT NOT BEING LISTENED TO
IN ANY MEANINGFUL WAY OR WORSE
BEING GIVEN A PAT ON THE BACK
FOR SHOWING UP AND CAN LOOK LIKE
WE'RE PARTICIPATING BEING PART
OF THE LEGISLATION TO THE MANY
ISSUES -- SOLUTION TO THE MANY
ISSUES IN OUR SOCIETY.
WE MUST BE THE ONES TO DRIVE
RESEARCH PRIORITIES, PARTICIPATE
IN DEVELOPING RESOURCES AND
AFFECT SOCIAL CHANGE AND
COLLABORATION WITH
PROFESSIONALS, RESEARCHERS AND
OTHER STAKEHOLDERS.
PROFESSIONALS MUST LISTEN IN
ORDER TO COLLABORATE AND MUST BE
VIEWED AS A VALUABLE PART TO
DEVELOPING SOLUTIONS THAT MAKE A
DIFFERENCE IN THE QUALITY OF OUR
LIVES.
WE KNOW WHAT WORKS AND DOESN'T
WORK AND OUR EXPERIENCES MUST BE
THE MOST IMPORTANT PART OF
FINDING SOLUTIONS.
NO AMOUNT OF BOOK LEARNING,
TRAINING OR ANY NUMBER OF YEARS
OF EXPERIENCE IN WORKING
DIRECTLY WITH AUTISTIC PEOPLE
CAN COME CLOSE TO THE KNOWLEDGE
LIVING WITH AUTISM AND BEING
AUTISTIC AND THOUGH OUR
INVITATION WAS LATE COMING WE
CAN MAKE UP FOR LOST TIME WITH
AUTISTIC PEOPLE ACCEPTED AS
KNOWLEDGEABLE COLLABORATORS.
THANK YOU.
>> THANK YOU VERY MUCH, LISA.
THANKS FOR BEING HERE.
NEXT, WE'LL HEAR FROM BOB
WILLIAMS.
>> THANK YOU AND GOOD AFTERNOON.
AS WAS SAID I'M BOB WILLIAMS
POLICY DIRECTOR OF COMMUNICATION
FIRST THE ONLY ORGANIZATION BY
AND FOR THE ESTIMATED 5 MILLION
PEOPLE IN THE U.S. WHO HAVE
SIGNIFICANT SPEECH-RELATED
DISABILITIES INCLUDING 30% TO
40% OF AUTISTIC PEOPLE BEFORE
CO-FOUNDING COMMUNICATION FIRST,
I WAS A SENIOR EXECUTIVE AT HHS.
EARLIER I WORKED ON CLOSING AN
INSTITUTION.
THANK YOU FOR INVITING US TO
COME COMMENT ON THE CRITICAL
CHALLENGES.
ADDRESSING COMMUNICATION NEEDS
OF AUTISTIC PEOPLE, WE SUBMITTED
WRITTEN COMMENTS ON APRIL 1,
2022 DUE TO THE TIME LIMIT I'LL
MAKE JUST TWO POINTS TODAY.
FIRST, LIKE SO MANY OF MY
NON-SPEAKING FRIENDS AND
COLLEAGUES, I WAS REGARDED AS,
QUOTE, SO SEVERELY AND
PROFOUNDLY DISABLED AND QUOTE,
MY PARENTS WERE TOLD TO DROP ME
AT THE INSTITUTION AND NEVER
RETURN LUCKILY IN THE 1960s I
SOMEHOW WAS ABLE TO WAS ABLE TO
TYPE AND GET A GOOD EDUCATION
AND GO ON TO COLLEGE.
TODAY HOWEVER, WE FIND YOUNG
PEOPLE AND ADULTS ARE DENIED THE
OPPORTUNITIES IRONICALLY THAT IS
MEANT TO BE THEIR CIVIL RIGHTS.
SECOND, MANY STILL ARE STAMPED
WITH THE SAME SEVERE AND
PROFOUND BRAND.
HAVING WORKED WITHIN THIS
LABELLED MY EXPERIENCES AND
BECOMES A JUSTIFICATION FOR
GIVING UP ON SOMEONE.
I AM A PAST BOARD MEMBER OF DASH
WHICH REMOVED THE TERM FROM ITS
NAME IN 1980.
BECAUSE IT DEHUMANIZED THOSE
WHOSE MOST BASIC RIGHT IS TO BE
RECOGNIZED AS HUMAN BEINGS IF
THE IACC IS CONSIDERING
RECOMMENDING CERTAIN TERMINOLOGY
WE USE WE STRONGLY URGE IT DOES
TO IN PARTNERSHIP WITH
NON-SPEAKING PEOPLE AND THEIR
ORGANIZATIONS.
IF YOU HAVE QUESTIONS ON OUR
WRITTEN COMMENTS OR MY COMMENTS
TODAY, I CAN ANSWER NOW OR IN
WRITING OR IF THERE'S ANY
ASSISTANCE WE CAN PROVIDE, WE
WOULD BE GLAD TO DO SO.
>> THANK YOU, BOB AND WE'LL HAVE
A DISCUSSION PERIOD AFTER ALL
THE COMMENTS AND PEOPLE ARE
WELCOME TO ASK ANY OF OUR
COMMENTERS QUESTIONS OR MAKE
COMMENTS ON THEIR COMMENTS.
NEXT WE'LL HEAR FROM EDLYN PENA.
IT'S A PLEASURE TO WELCOME YOU
BACK AS A FORMER MEMBER OF THE
IACC TO GIVE COMMENTS TODAY.
>> THANK YOU, DR. DANIELS, I
APPRECIATE IT.
MY NAME IS DR. EDLYN PENA A
PROFESSOR AT CAL LUTHERAN
UNIVERSITY AND FROM THE
COMMUNICATION CENTER.
I SERVED ON THE IACC FROM 2016
TO 2020.
AS THE EDITOR AND AUTHOR OF THE
BOOKS COMMUNICATION ALTERNATIVES
IN AUTISM AND LEADERS AROUND ME,
I'M THRILLED IACC HAS DECIDED TO
FOCUS ON SUPPORT BEING
AUGMENTATIVE AND ALTERNATIVE
COMMUNICATION AAC AMONG
NON-SPEAKING AND MINIMALLY
SPEAKING INDIVIDUAL.
ONE OF THE MAJOR DEBATES IN THE
AAC WORLD IS WHETHER PARENTS AND
PRACTITIONERS SHOULD SUPPORT
TEXT-BASED METHODS THAT REQUIRE
A ONE-ON-ONE COMMUNICATION
PARTNER TO PROMPT AND SUPPORT A
MINIMALLY SPEAKING INDIVIDUAL TO
COMMUNICATE.
SOME OF THE COMMON METHODS
INCLUDE FACILITATED
COMMUNICATION, FC FOR SHORT,
RAPID PROMPTING METHOD, RPM AND
SPELLING TO COMMUNICATE, STC.
THE CHIEF QUESTION DEFINING THE
CONTROVERSY IS WHO IS THE AUTHOR
OF THE MESSAGE BEING TYPED?
THE FACILITATOR, COMMUNICATION
PARTNER OR IS IT STUDENT OR
COMMUNICATOR?
THUS FAR, EXPERIMENTAL STUDIES
INDICATE THAT TYPED RESPONSES
USING FC METHODS WERE EITHER
INFLUENCED BY THE FACILITATOR OR
THE COMMUNICATORS WERE NOT ABLE
TO INDEPENDENTLY PASS MESSAGES.
IN SOME CASES THE BAD WRAP THE
METHODS HAVE RECEIVED IS FAIR.
IN OTHER CASES IT IS NOT.
THERE'S NO QUESTION THAT THESE
FORMS OF COMMUNICATION CAN BE
SUBJECT TO INFLUENCE.
YET, THE RESEARCH STUDIES ALONE
OFFER AN INCOMPLETE PICTURE.
THERE'S EVIDENCE OF STUDENTS AND
INDIVIDUALS WHO USING THE
VARIOUS METHODS AND BECOME
INDEPENDENT IN THEIR
COMMUNICATION.
THAT IS, THEY'RE COMMUNICATION
PARTNER SITS OR STANDS NEAR THEM
BUT DOES NOT HOLD THE LETTER
BOARD OR PROVIDE PHYSICAL
SUPPORT.
I WITNESSED THIS MYSELF.
IN ADDICTION THERE'S DOCUMENT OF
INDIVIDUALS WHO USE METHODS WHO
HAVE COMMUNICATED MEDICAL
CONDITIONS, EVEN ONES THAT LED
TO DIAGNOSES AS SEVERE AS CANCER
AND YET CRITICS REFUSE TO ADMIT
WHAT IS BEING TYPED IN THE
CIRCUMSTANCES IS AUTHENTIC
COMMUNICATION FROM THE PERSON
TYPING OR SPELLING.
I IMPLORE ANY RESEARCHERS, TASK
FORCES OR COMMITTEES TO EXPLORE
QUESTIONS BEYOND THE
COMMUNICATORS AUTHORSHIP.
FIRST, WHAT ARE THE
CIRCUMSTANCES UNDER WHICH A
COMMUNICATOR BECOMES INDEPENDENT
IN THEIR COMMUNICATION?
WHAT SORT OF SUPPORT, FADING OF
PROMPT, USER PROFILES,
COMMUNICATION PARTNER TRAINING,
ETCETE
ETCETERA, LEAD TO INDIVIDUALS
BECOMING PROGRESSIVELY
INDEPENDENT.
A LONGITUDINAL STUDY WOULD BE
REQUIRED SINCE IT TAKES YEARS TO
BECOME INDEPENDENT.
SECOND, NON-SPEAKING AND
MINIMALLY SPEAKING AUTISTIC
INDIVIDUALS HAVE CHALLENGES AND
SYMPTOMS THAT PLAY A ROLE IN THE
DYNAMICS OF COMMUNICATING ON KEY
BOARDS AND LETTER BOARDS.
RESEARCH MUST CONTINUE TO
UNCOVER ANSWERS TO SENSORY
DIFFERENCES, MOTOR PLANNING
DIFFERENCES AND ANXIETY.
ALL OF WHICH HAVE BEEN
DOCUMENTED TO SOME EXTENT IN THE
AUTISM LITERATURE.
THE RELATIONSHIP AMONG THESE
EXPERIENCES AND ALTERNATIVE
COMMUNICATION IS NOTE YET WELL
UNDERSTOOD.
DOING SO REQUIRES RESEARCHERS
AND PRACTITIONERS TO CONSIDER
MULTIPLE SOURCES OF DATA, FOR
EXAMPLE, INTERVIEWS, NARRATIVES,
FIELD NOTES TO GIVE US MORE
HOLISTIC PICTURE BEYOND WHAT CAN
BE REVEALED THROUGH QUANTITATIVE
METHODS WITHIN THE CONTEXT OF
EXPERIMENTAL STUDIES.
ENGAGING IN RESEARCH STUDIES TO
ADDRESS UNANSWERED QUESTIONS
WILL HELP THE AUTISM COMMUNITY
DETERMINE THE CONDITIONS UNDER
WHICH FC, RPM, OR OTHER
TEXT-BASED AAC METHODS WHEN DONE
ETHICALLY AND WITH RIGOR CAN BE
SUCCESSFUL.
FURTHER, THE ANSWER TO THESE
QUESTIONS WILL ENABLE THE
COMMUNITIES THAT USE THESE
METHODS TO MOVE PAST THE
QUESTION OF AUTHORSHIP TOWARD
ADDRESSING SENSORY, MOTOR AND
ANXIETY CHALLENGES THAT IMPACT
COMMUNICATION AS WELL AS I AM
PROVING TRAINING OF
COMMUNICATORS AND FACILITATORS.
SO RATHER THAN DETERMINING THAT
A FORM OF COMMUNICATION WHICH IS
SUBJECT TO INFLUENCE IS
THEREFORE DANGEROUS AND SHOULD
THUS BE STOPPED, PROFESSIONALS
SHOULD BE COMMITTED TO
UNDERSTANDING THE WAYS IN WHICH
TO REDUCE INFLUENCE AND TO
SUPPORT THE PROGRESSIVE
INDEPENDENCE AND RELIABILITY OF
THE COMMUNICATOR.
THANK YOU FOR HAVING ME.
>> THANK YOU VERY MUCH, EDLYN
FOR THAT COMMENT AND THANK YOU
ALL FOR BEING HERE WITH US TODAY
AND SHARING THESE COMMENTS AND
WE LOOK FORWARD TO DISCUSSION
AFTER WE GO THROUGH THE WRITTEN
COMMENTS.
SO AT THIS TIME I'M GOING SHARE
WITH YOU THE SUMMARY OF WRITTEN
PUBLIC COMMENTS.
WE HAD THE MOST ROBUST WRITTEN
PUBLIC COMMENT RECEIPT WE'VE
EVER HAD THIS TIME AROUND.
WE HAD 271 WRITTEN PUBLIC
COMMENTS THAT CAME IN FOR THIS
MEETING AND WEREN'T PART OF A
FLASH SOLICITATION AND I CAN'T
SHARE ALL THE NAMES BUT SHARE
THE DIFFERENT TOPICS AND WE
DIVIDED THE COMMENTS INTO TOPICS
TO MAKE IT EASIER AND ANYONE
WHOSE WATCHING ONLINE YOU CAN
SEE THE FULL TEXT OF THE
COMMENTS IN THE MEETING
MATERIALS THAT ARE POSTED
ONLINE.
SO FIRST WE HAD 153 COMMENTS
THAT WERE ON RESEARCH AND
SERVICE NEEDS, RESOURCES AND
POLICY IMPLICATIONS.
THIS IS THE SECOND PAGE OF NAMES
AND THAT'S THE THIRD PAGE OF
NAMES FOR THAT PARTICULAR TOPIC.
WE HAD 43 COMMENTS ABOUT
CONCERNS ON MEDICAL PRACTICES
AND THE NAMES ARE LISTED HERE.
WE HAD 21 COMMENTS ON THE ROLE
OF THE IACC AND THE FRLTH AND --
FEDERAL GOVERNMENT AND 22
COMMENTS ON RESEARCH FOR SUPPORT
FOR ADULTS ON THE AUTISM
SPECTRUM AND THE DIRECT NEEDS OF
PROFESSIONALS IN THE WORKFORCE,
FOUR COMMENTS PERTAINING TO
EMPLOYMENT EIGHT COMMENTS TO
POTENTIAL CAUSES OF AUTISM, FIVE
COMMENTS ON THE NEEDS OF
AUTISTIC INDIVIDUALS WITH HIGH
SUPPORT NEEDS AND 12 COMMENTS ON
INCREASING AUTISM ACCEPTANCE AND
REDUCING STIGMA.
THOSE WERE ALL THE COMMENTS.
SO NOW WE HAVE SOME TIME FOR
IACC MEMBERS TO DISCUSS THE
COMMENTS.
I WOULD ENCOURAGE YOU TO KEEP
YOUR COMMENTS SOMEWHAT SHORT SO
WE CAN GET TO EVERYONE.
GO AHEAD AND ALLISON I SEE YOUR
HAND RAISED.
>> HELLO.
I'M FROM THE SOCIAL SECURITY
ADMINISTRATION AND I'M
RESPONDING TO THE PRESENTATION
AT THE LAST IACC MEETING BY DENA
GASNER.
TAKING STEPS TO BETTER
ACCOMMODATE THOSE ON THE
SPECTRUM.
WE PASSED THEM ON TO THE
APPROPRIATE INDIVIDUALS AND
WE'VE BEEN WORKING ON
EQUITY-RELATED ISSUES AND TODAY
THE SOCIAL SECURITY
ADMINISTRATION RELEASED THE
FIRST EQUITY ACTION PLAN
SUPPORTING PRESIDENT BIDEN'S
WHOLE OF GOVERNMENT EQUITY
AGENDA TO ADVANCE EQUITY, CIVIL
RIGHTS, RACIAL JUSTICE AND EQUAL
OPPORTUNITY FOR ALL.
THE ACTING COMMISSIONER STATED
SYSTEMIC BARRIERS MAY PREVENT
PEOPLE WHO NEED OUR PROGRAMS THE
MOST FROM ACCESSING THEM AND
EQUITY ACTION PLAN WILL HELP TO
REDUCE THE BARRIERS AND ENSURE
PEOPLE HAVE ACCESS TO OUR
SERVICES.
SO I WANTED YOU TO KNOW WE HEAR
YOU AND WE ARE ACTIVELY WORKING
TO MAKE THINGS BETTER.
THANK YOU SO MUCH.
>> WHEN DR. HEMSMER WAS HERE WE
HAD QUESTIONS WE WEREN'T ABLE TO
GET TO AND PROVIDED ANSWERS TO
THOSE PROVIDED BY SSA IN THE
MEETING MATERIALS.
YOU'LL FIND THEM IN THE ROUND
ROBIN SECTION.
THANK YOU SO MUCH AND WE'LL BE
SURE TO ADD THAT UPDATE TO THE
FEDERAL NEWS SECTION OF THE IACC
WEBSITE AFTER THE MEETING.
THANK YOU.
NEXT, DO WE HAVE MORE COMMENTS
THE MEMBERS OF THE IACC.
DENA.
>> I NOTICED A PATTERN WHERE
PEOPLE WERE CALLING FOR MORE
PEOPLE ON THE SPECTRUM TO BE ON
THE IACC.
I'M NOT SURE PEOPLE UNDERSTAND
THAT THE IACC INVITES AGENCY
REPRESENTATIVES BUT WE DON'T GET
TO IDENTIFY WHO THEY WILL BE
THOUGH MANY ARE PEOPLE ON THE
SPECTRUM OR DIRECT RELATIVES OF
PEOPLE ON THE SPECTRUM.
I THOUGHT IT WOULD BE GOOD TO
GIVE AN OPPORTUNITY TO
UNDERSTAND HOW THE IACC IS
CONSTRUCTED.
SORRY TO CATCH YOU COLD.
I SHOULD HAVE SENT IT LAST NIGHT
BUT I HAD IT IN MY NOTES AND
FORGOT TO ADDRESS IT.
>> THERE'S GUIDANCE ON MEMBERS
WE'RE SUPPOSED TO INCLUDE AND
THAT INCLUDES AUTISTIC
INDIVIDUALS, PARENTS AND FAMILY
MEMBERS AND LEADERS OF NATIONAL
SERVICES AND SUPPORTS
ORGANIZATIONS RESEARCH
ORGANIZATIONS AND ADVOCACY
ORGANIZATIONS.
THOSE GROUPS ARE DIVIDED INTO
THREE HOWEVER, MANY WEAR MORE
THAN ONE HAT AND DENA IS AN
AUTISTIC SELF-ADVOCATE AS WELL
AS SOMEBODY WHO HAS A CHILD OR
AN ADULT CHILD ON THE SPECTRUM.
SOME ARE BOTH PARENTS AND
ADVOCATES OR PARENTS AND
RESEARCHERS OR AUTISTIC
INDIVIDUALS AND ADVOCATES IN
ORGANIZATIONS.
THERE'S MANY WAYS PEOPLE WHERE
MULTIPLE HATS.
THERE'S AN EFFORT BY THE
SECRETARY OF HEALTH AND HUMAN
SERVICES TO APPOINT PEOPLE THAT
REPRESENT THE BROAD VARIETY OF
PERSPECTIVES ACROSS THE AUTISM
COMMUNITY.
FEEL FREE TO CHECK OUT OUR
ROSTER AND THE BIOS ON OUR
WEBSITE FOR THE MEMBERS OF THE
COMMITTEE.
>> THANK YOU, SUSAN AND THANK
YOU ALLISON FOR YOUR GREAT
RESPONSE AND WOULD LOVE TO REACH
OUT AFTER IF THERE'S ANYTHING I
CAN DO.
THANK YOU.
>> THANK YOU.
WE HAVE A QUESTION FROM SUSAN
RIVERA.
>> IT'S MORE A COMMENT.
I WANTED TO THANK HER FOR
COMMENTS ON IACC AND ADD AN IDEA
AND THERE'S TECHNOLOGY LIKE EYE
TRACKING IN UNDERSTANDING WHEN
YOU HAVE AUGMENTATIVE
COMMUNICATION THAT IS MORE
SELF-INITIATED VERSUS BEING THAN
BEING SOMEONE ELSE'S
COMMUNICATION AND WANT TO PUT
OUT THE COMMUNICATION THAT THIS
KIND OF RESEARCH BE ENCOURAGED,
BE SUPPORTED AND FUND ED FUNDED TO PUT
MYTHS TO REST AND USE THE
TECHNOLOGY AND RESOURCES
AVAILABLE TO US AS RESEARCHERS
TO UNDERSTAND THE QUESTIONS.
CRITICALLY WE NEED TO INVOLVE
THOSE WHO ARE SCEPTICS AND
SUPPORTERS OF IACC TO REALLY BE
A PART OF THIS CONVERSATION AND
PART OF THE RESEARCH SO EVERYONE
SAY STAKEHOLDER IN INFORMATION
THE TRUTH OF THE COMMUNICATION
WHO IT HELPS AND WHAT WAYS THEY
CAN HELP.
USE WHAT WE ARE USING IN OTHER
ELEMENTS OF RESEARCH TO UNPACK
THE QUESTION.
>> THANK YOU AND THE IACC
STRATEGIC PLAN IS A GOOD PLACE
TO MAKE RECOMMENDATIONS.
WE'LL TALK ABOUT THAT AND OTHER
TOPICS AT OUR JULY WORKING GROUP
MEETING.
SCOTT.
>> I WANTED TO ECHO WHAT SUSAN
WAS SHARING.
AND LOOK AT THE STRATEGIC PLAN
AND WE SHOULD EXPLORE THE
LONG-TERM AND GREAT TO EXPLORE
WAYS TO ENHANCE THE FOCUSES IN
RESEARCH IN TERMS OF PRIORITIES
THAT ARE BOTH FOR THE PROJECTS
AND THE AUTISM CENTER S AND WHAT
IT MEANS TO IMPROVE
OPPORTUNITIES IN LIFE AND
QUALITY OF LIFE AND ALSO AND
MAYBE IN OCTOBER DURING NATIONAL
IACC MONTH MAYBE WE CAN
COLLABORATE ON A PANEL OF
AUTISTIC AAC USERS TO CONNECT
WITH THE EMPHASIS WITH THAT
PRIORITY OF MAKING SURE FOLKS
HAVE FULL ACCESS TO
COMMUNICATION.
WHICH IS A RIGHT IN PRIORITIES
OF THE U.N. CONVENTION RIGHTS OF
PERSONS WITH DISABILITIES UNCRPT
AND IT'S GREAT SEEING THE
COMMENTS ON EMPLOYMENT AND
ACCESS TO CAREER PATHS FOR FOLKS
AND A JUST WANT TO RELY ON FOLKS
WE HAD THIS IN OUR ROUND ROBIN
UPDATE WE'RE RUNNING THE
RESEARCH PROJECT THE NEXT THREE
YEARS AND STARTS THIS YEAR UP TO
2024 ON PROJECT ON RESEARCH
SUPPORT SERVICES FOR EMPLOYMENT
OF YOUNG ADULTS ON THE AUTISM
SPECTRUM AND WE'RE RUNNING
LISTENING SESSIONS NOW IN APRIL
THE PROJECT WILL CONTINUE TO
REDUCE WORK BARRIERS AND FINDING
SOLUTIONS, ENHANCING POLICIES
AND PRACTICES AND IT'S GREAT TO
FIND INPUT FROM FOLKS AND ALSO
AN EMPHASIS ON THE WRITTEN
COMMENTS WAS IN MORE DATA IN
TERMS OF WHAT IT LOOKS LIKE IN
THE SPECIFIC UNEMPLOYMENT AND
UNDER EMPLOYMENT AND INCOME
BARRIERS, ETCETERA.
THAT'S SOMETHING WE'RE LOOKING
IF WE CAN DO THINGS AT THE
DEPARTMENT OF LABOR OR MAYBE
COLLABORATE WITH FEDERAL
PARTNERS ON THAT IN TERMS OF
WHAT THAT LOOKS LIKE WITH
DIFFERENT AVENUES AND SURVEYS AS
POSSIBILITIES ON THE DATA.
WE DO RECOGNIZE THERE'S A LARGE
DATA GAP INCLUDING WHAT'S
AVAILABLE IN THE EMPIRICAL
LITERACY AND SMALLER STUDIES AND
WE NEED TO LEARN ABOUT THE
CURRENT STATE OF EMPLOYMENT,
UNDER EMPLOYMENT, IN TERMS OF
BARRIERS FOR FOLKS BEING ABLE TO
FINDS THEIR INTEREST, WORK AND
SKILLS AND BE SUCCESSFUL IN THE
WORK THEY CAN ENJOY AND THRIVE.
GREAT THE COMMENTS ARE THERE AND
GREAT TO SEE ALSO THAT FOLKS ARE
ACTIVELY CONTRIBUTING OVERALL
THE COMMITTEE BROKE THE RECORD
AS FAR AS WOULD YOU SAY --
>> 1 -- 2 71.
>> TREMENDOUS ENGAGEMENT IN THE
COMMUNITY.
>> I'D LIKE TO THANK
ORGANIZATIONS THAT HAVE SENT OUT
NOTES TO PEOPLE AND PLEASE ANY
ORGANIZATION THAT IS REPRESENTED
HERE ENCOURAGE PEOPLE TO GIVE
COMMENTS AND WE'LL FOLLOW UP ON
THOSE THINGS AFTER THE MEETING.
PAUL, DO YOU HAVE A COMMENT OR
QUESTION?
>> COMMENT, PLEASE.
IT'S GOING TO SOUND LIKE I'M
JUMPING ON THE BANDWAGON AND
THERE'S A NUMBER OF OTHER
WRITTEN COMMENTERS FOR BRINGING
ATTENTION TO THE ISSUE OF IACC.
I THINK THAT IS OF THE HIGHEST
IMPORTANCE.
I DON'T THINK THERE'S
DISAGREEMENT THAT COMMUNICATION
ABILITY IS CENTRAL TO QUALITY OF
LIFE AND THAT'S THE QUALITY OF
LIFE WE WANT TO ADVANCE AND IF
COMMUNICATION DOES NOT WORK
VERBALLY, LOCALLY, WE NEED TO
FIND THESE OTHER AVENUES THROUGH
WHICH AUTISTIC PEOPLE CAN
COMMUNICATE.
SO AAC IS WONDERFUL FOR THAT.
DR. SUSAN RIVERA TALKED ABOUT
THE NEED FOR RESEARCH ON IACC.
I SECOND THAT CALL.
I WANT TO MENTION MY
ORGANIZATION, SAFARI, OR THE
WE'RE BETTER KNOWN FOR RESEARCH
ON GENETICS AND NEURO BIOLOGY
AND RESEARCH SHOWING THERE'S
NON-VERBAL AUTISTIC PEOPLE WHO
CAN READ WHO WERE NEVER THOUGHT
ABLE TO BE READ BUT THROUGH THE
USING OF EYE TRACKING WE CAN
DEMONSTRATE INDEED THEY
COMPREHEND THE WORDS BEING SHOWN
TO THEM SO CLEARLY THOSE ARE
PEOPLE WHO MAY SOME BENEFIT FROM
THE USE OF AAC.
TO UNDER SCORE ONE PARTICULAR
POINT EDLYN PENA RAISED, THERE
ARE CASES WHERE IT'S THE
FACILITATOR, THE COMMUNICATOR
NOT THE PERSON WHO IS
COMMUNICATING AND WE NEED TO BE
ABLE TO ALSO DETERMINE, IDENTIFY
WHERE THAT'S THE CASE BECAUSE
THE AUTISTIC PERSON IS NOT BEING
PROPERLY SUPPORTED OR
REPRESENTED OR HELPED.
THE QUALITY OF LIFE IS NOT BEING
HELPED WHEN THEY'RE THOUGHT THE
ONES ABLE TO SPEAK.
WE NEED RESEARCH ON THE LARGER
LEVEL AND BE ABLE TO IDENTIFY
THE INDIVIDUAL CASES WHO IT'S
WORKING FOR.
AND IN RESPONSE TO STEVIE MAYS'
COMMENTS THAT I DON'T THINK IT'S
THE ABA THERAPIST TO BE BEST
PLACED TO HELP WITH AAC.
I AGEE THERE'S PEOPLE WHO NEED
AND BENEFIT MORE FROM AAC THAN
FROM ABA BUT IT'S NOT THE ABA
PERSON WHO SHOULD STEP IN THAT
ROLE AND IN ALL CASES IT'S GOING
TO BE SOMEONE WITH SPEECH
PATHOLOGY TRAINING IN THE BEST
PLACE TO DO THAT AND FAMILIES
AND INDIVIDUALS NEED THE FUNDING
AND SUPPORT TO GET THOSE
SERVICES TO SUPPORT AAC AND TO
HAVE A HIGHLY QUALIFIED
INDIVIDUAL HELP THEM WITH THE
AAC.
>> THANK YOU FOR THE COMMENTS.
NEXT WE'LL TAKE SPAY COMMENT OR
QUESTION FROM IVANOVA SMITH.
>> I WANT TO SAY I'M SUPPORTIVE
FOR RESEARCH AND FOR
COMMUNICATION AND I ALSO WANT TO
VALUE WHEN SOMEBODY HAS
COMMUNICATION.
SOME PEOPLE ARE ESPECIALLY
CHILDREN, YOUNG CHILDREN LIKE
BODY LANGUAGE IS THE FIRST WAY
YOU COMMUNICATE.
AND WE NEED TO MAKE SURE WE
RECOGNIZE THAT AND SOMEBODY IS
STILL STRUGGLING WITH OTHER
TERMS OF COMMUNICATION THAT WE
RECOGNIZE THE BODY LANGUAGE AS A
FORM OF COMMUNICATION AND WE
DON'T JUST WAVE IT OFF AS A
CHALLENGING BEHAVIOR.
A LOT OF TIMES THAT HAPPENS BUT
IT COULD BE A MEDICAL THING OR
IT COULD BE SOMETHING GOING ON
THAT IF THEY TRIED TO
COMMUNICATE WITH THEIR BODY
LANGUAGE IT WOULD HELP.
AND I THINK THAT ALSO SIGN
LANGUAGE IS A FORM OF
COMMUNICATION AND A SUPPORT THE
WONDERFUL COMMENTS FROM
NON-SPEAKING INDIVIDUALS AND
THANK THEM.
I THINK WE NEED TO MAKE SURE
PEOPLE THAT ARE NON-SPEAKING
HAVE THE SAME RIGHTS AS PEOPLE
WHO ARE SPEAKING AND THAT WE
DON'T HAVE POLICY THAT RESTRICT
THE RIGHTS BECAUSE A PERSON
CANNOT SPEAK.
THANK YOU.
>> THANK YOU, IVANOVA.
NEXT WE'LL HEAR FROM JULIE
TAYLOR.
>> I WANTED TO RESPOND QUICKLY
ABOUT THE COMMENTS ON EMPLOYMENT
AND PIGGY BACK ON WHAT SCOTT WAS
DISCUSSING AND WE NEED TO HAVE A
DISCUSSION OFFLINE BECAUSE WE'RE
RIGHT IN THE MIDDLE OF A STUDY
OR BE THE -- OR THE BEGINNING
TAKING A DEEP DIVE IN
UNDERSTANDING WHAT IS HELPFUL
AND HELPING AUTISTIC ADULTS GET
ON A POSITIVE EMPLOYMENT
TRAJECTORY.
IT'S A SMALLER STUDY THAN WHAT
YOU'LL BE ABLE TO DO AT DOL BUT
200 ADULTS WILL BE FOLLOWED
CLOSELY OVER TWO YEARS AND DO A
DEEP DIVE TO UNDERSTAND THE
CHARACTERISTICS OF THE WORKPLACE
AND THE SERVICE SYSTEMS AND WHAT
STRENGTHS THEY BRING TO THE
TABLE TO HELP ENHANCE EMPLOYMENT
STABILITY AND HELPING PEOPLE ON
WHAT'S PREDICTIVE OF UPWARD
TRAJECTORY IN MOVING INTO
CAREERS AND JOBS THAT FULFILL
NEEDS FOR THEM.
YOU GUYS ARE DOING THIS ON A
LARGE SCALE.
WE'LL DO IT ON A SMALLER SCALE
BUT REALLY DELVE DEEPLY INTO HOW
PEOPLE ARE SPENDING THEIR DAYS
AND EMPLOYMENT ACTIVITY TO GET A
LOT OF INFORMATION ABOUT THE
DIFFERENT WAYS WE CAN SUPPORT
AUTISTIC ADULTS IN POSITIVE
WAYS.
I THINK WE'LL LEARN A LOT OF
ABOUT THIS OVER THE NEXT FEW
YEARS AND OTHER PEOPLE ARE DOING
GREAT WORK.
I WANTED TO MENTION THE STUDY
WE'RE WORKING ON.
>> THANK YOU FOR SHARING AND
WE'RE LOOKING FORWARD TO HEARING
MORE IN THE FUTURE.
NEXT A COMMENT FROM STEVEN
ISAACSON ON THE OARAC TEAM AND
BELIEVE HE HAS A COMMENT TO
SHARE.
>> I HAVE WE TO COMMENTS FROM
HARI.
FIRST, EDLYN.
EVERYBODY DESERVES TO BE
INCLUDED.
IT'S LIKE EVERYONE IS SO
OBSESSED OVER ONE ISSUE THE
ENTIRE COMMUNITY IS GATE KEEP
FROM ACCESSING OPPORTUNITIES
THAT CONTRIBUTE TO THEIR
SUCCESS, EDUCATION, WELL BEING
AND EVEN EMPLOYMENT.
THE SECOND COMMENT IS IN REGARDS
TO PAUL.
THANKS, PAUL.
IT'S ABOUT QUALITY OF LIFE.
YOU CAN LEARN READING AND
COUNTING FROM JUST WATCHING
SESAME STREET, MY FAVORITE
CHILDHOOD PROGRAM.
>> THANK YOU, STEVEN.
NEXT WE CAN HEAR FROM FELICIA
HALLADAY.
>> THANK YOU FOR TAKING MY
COMMENT, SUSAN.
I WANTED TO MAKE THE POINT HERE
THAT WE SEEM TO BE LUMPING
TOGETHER THE TERM AAC WITH FC
FOR FACILITATED COMMUNICATION
AND I DON'T KNOW BUT I'M HOPING
THAT THERE'S SOME SORT OF
DISTINCTION ABOUT THIS MADE IN
ONE OF THE PRESENTATIONS BUT I
WOULD JUST LIKE TO MAKE SURE
THAT GOING FORWARD WE ARE VERY
SPECIFIC ABOUT THE AAC AND WHAT
THAT MEANS VERSUS FC OR
FACILITATED COMMUNICATION AND
WHAT THAT ENTAILS.
SO JUST TO MAKE SURE WE'RE CLEAR
BECAUSE SOME PEOPLE KNOW THE
DIFFERENCE AND OTHERS WATCHING
MAY NOT.
>> THANK YOU FOR SHARING THE
CLARIFICATION.
I'M SURE OUR SPEAKERS IN THE
NEXT SECTION WILL BE ABLE TO
ADDRESS THAT.
WE HAVE A COMMENT FROM DENA.
>> QUICKLY, I FORGOT TO MENTION
THIS, I WANTED TO MAKE SURE WE
ALSO KEEP THE UNDERSTANDING THAT
SOME PEOPLE WHO ARE PRIMARILY
VERBAL CAN HAVE EPISODIC MUTISM
WHERE THEIR LANGUAGE FLOWS IN
AND OUT I KNOW A FEW PEOPLE HAVE
BOTH VERBAL LANGUAGE BUT UNDER
EXTREME PRESSURE TO PERFORM BUT
UNDER THE FLOW OF ANXIETY OR A
CHALLENGING SITUATION THEIR
LANGUAGE MAY NO LONGER BEING
ACCESSIBLE TO THEM AND THEY'RE
ALSO OFTEN IACC USERS.
SO WHEN WE'RE TALKING ABOUT IT I
WANT TO MAKE SURE WE'RE MAKING
ROOM FOR PEOPLE WHO USE BOTH
MODALITIES.
THANK YOU.
>> THANK YOU AND IT'S A GOOD
CLARIFICATION TO REALIZE THERE'S
PEOPLE WHO DO SPEAK AT TIMES AND
OTHER TIMES IT'S EASIER TO USE
AAC AND WE WELCOME ANY KIND OF
COMMUNICATION THAT WORKS FOR
THEM.
NEXT A COMMENT FROM JALYNN
PRINCE.
>> THANK YOU.
THIS IS AN IMPORTANT TOPIC.
I'M A MOTHER OF A SON WHO IS
BASICALLY NON-VERBAL.
HE UTILIZES ART A WAY OF
COMMUNICATION AND IT'S DEEP AND
VERY PROFOUND BUT THERE'S
ANOTHER HAT I WEAR AND SOMETIMES
YOU'LL SEE THE GO BACK AND FORTH
BETWEEN HARD DATA RESEARCH AND
PRACTICAL ASPECTS BECAUSE OUR
FIND WORK DIRECTLY WITH PEOPLE
WITH PARENTS WITH UNDERSTANDING
HOW TO COMMUNICATE TO THE
BROADER COMMUNITY WHAT MANY OF
THE NEEDS ARE WITHIN OUR
COMMUNITY OF AUTISM AND AS A
RESULT WE HAVE A PROGRAM
TARGETED VERY MUCH ON OUR AUTISM
AFTER 21 DAY WHICH IS NEXT
THURSDAY AND GEAR TOWARDS
THOUGHT LEADERS IN THE COMMUNITY
AND AS A RESULT WE HAVE A VERY
INTERESTING VIDEO THAT IS BEING
PRODUCED AND IF IT ENDS UP AS
GOOD AS THE OTHERS, WE'VE HAD
OUR FIRST EDITS WITH IT AND HAVE
THREE YOUNG MEN FEATURED IN THIS
AND THIS IS A COHORT OF FIVE
YOUNG MEN THAT HAVE GROWN UP
TOGETHER THAT USE AUGMENTATIVE
COMMUNICATION AND ONE YOUNG MAN
SAID AS HE GOT INTO THIS THAT
FINALLY HE'D BE LET OUT OF
PRISON BECAUSE HE WAS ABLE TO
COMMUNICATE.
WE'RE ALL EXTREMELY ARTICULATE.
IT'S A VIDEO ABOUT FOUR AND A
HALF MINUTES BECAUSE WE TRY TO
KEEP IT BRIEF ENOUGH WE CAN SHOW
IT TO A LOT OF THESE THAUTH
LEADERS AND DEMYSTIFY THINGS
THAT GO VERY MUCH TO THE POINT
OF EMPLOYMENT BECAUSE IF WE CAN
HAVE EMPLOYERS AND OTHERS IN THE
COMMUNITY UNDERSTAND BEHIND
SOMEONE WHO MAY BE SOMEWHAT
SILENT VERBALLY, THERE COULD BE
A LOT OF CONTENT AND VALUE IN
EMPLOYING THE INDIVIDUALS AS
WELL.
AND IT WILL BE MADE AVAILABLE ON
THE MADISON HOUSE AUTISM WEBSITE
AFTER THE 21st OF APRIL.
IF YOU WANT TO SHOW IT TO ANYONE
OR TAKE A LOOK AT IT AND
COMMENT, WE THINK IT'S IMPORTANT
TO BE ABLE TO COMMUNICATE NOT
JUST WITH PROFESSIONALS AND
PEOPLE INVOLVED IN THINGS LIKE
OURSELVES, BUT WITH THE REST OF
THE COMMUNITY SO WE CAN HAVE
GREATER UNDERSTANDING HOW TO
HAVE ACCEPTANCE HAPPEN WITHIN
OUR COMMUNITY.
THANK YOU VERY MUCH
>> THANK YOU.
AND WE HAVE INFORMATION ABOUT
THE AUTISM AFTER 21 DAY ON THE
WEB PAGE WHICH WILL TAKE YOU TO
THE MADISON HOUSE WEBSITE.
NEXT I'D LIKE TO HEAR FROM
LINDSEY.
>> THIS IS STEVEN.
THANK YOU TO EVERYONE WHO
SUBMITTED AND SHARED YOUR
COMMENTS.
IN REVIEWING THE WRITTEN
COMMENTS AND LISTENING TO THE
ORAL COMMENTS FOR THE APRIL 2022
COMMITTEE MEETING ONE THING THAT
STANDS OUT IS COMMUNICATION AND
NOT ADEQUATE COMMUNICATION
SUPPORTS.
AS MENTIONED IN SOME WRITTEN
COMMENTS, THIS APPLIES TO
AUTISTICS WHO HAVE MORE
SIGNIFICANT SUPPORT NEEDS AND
HAVE NOT YET SUCCEEDED IN
FINDING A METHOD OF
COMMUNICATION THAT WORKS FOR
THEM.
NOT EVERYONE HAS BEEN ABLE TO
SUCCESSFULLY LEARN HOW TO USE
COMMUNICATION DEVICES CURRENTLY
AVAILABLE.
IT'S INCREDIBLY IMPORTANT TO TAY
PASSENGERS TO AS WE DISCUSS OUR
RESEARCH PRIORITIES.
WE NEED TO CONTINUE TO
ACKNOWLEDGE AND RECOGNIZE THE
CONCERNS RAISED BY OUR COMMUNITY
ABOUT EXCLUDE BEING THE VOICES
OF INDIVIDUALS WITH HIGH SUPPORT
NEEDS.
I APPRECIATE THE IACC EFFORTS IN
BEGINNING TO IMPROVE THE
DIVERSITY OF VOICES ON THE
TABLE.
WE HAVE BEGUN TO WITNESS THE
EFFORTS TAKE PLACE IN THE
CURRENT REPRESENTATION OF OUR
COMMITTEE MEMBERS HOWEVER, I
WANT TO BE CLEAR THAT WE HAVE TO
AMPLIFY THE VOICES OF
INDIVIDUALS AND LOVED ONES WHO
REQUIRE HIGHER SUPPORT NEEDS AND
NEED TO ENSURE THEY HAVE
REPRESENTATION ON THE TABLE.
WE NEED TO DO BETTER ON
FOCUSSING ON THE ENTIRETY OF THE
SPECTRUM PARTICULARLY
INDIVIDUALS AND THEIR LOVED ONES
WHO RELY ON 24/7 SUPPORT AND I
WANT TO ENCOURAGE THE IACC
CONTINUE EFFORTS TO IMPROVE THE
DIVERSITY OF ITS MEMBERS AND WE
DO NOT LOSE SIGHT OF THAT EFFORT
AND WANT TO THANK DR. GORDON FOR
REMARKS ON LISTENING AND
RESPECTING EACH OTHER'S
PERSPECTIVES.
>> THANK YOU VERY MUCH FOR THOSE
COMMENTS.
NEXT, CRAIG JOHNSON.
>> I'M EXCITED TO HEAR WHAT
SCOTT WAS TALKING ABOUT AND
JULIE WHEN IT COMES TO JOBS.
I'VE SEEN BREAKTHROUGHS HAPPEN
WITHIN STATE ORGANIZATIONS.
I'D LOVE TO EXPLORE HOW MUCH AND
WE'RE HELPING MRO INING EMPLOYERS PROVIDE
JOBS OR WORK WITH DIFFERENT
INDIVIDUALS.
IN OUR STATE WE'VE DONE THREE
JOB FAIRS IN THE LAST THREE
YEARS A PLACE CALLED TEXAS
WORKFORCE SOLUTIONS HAS GOTTEN
40 OR 50 EMPLOYERS WILLING TO
WORK WITH SPECIAL NEEDS ADULT TO
HAVE THEM APPLY FOR JOBS AND
MANY GOT JOBS.
I WOULD LOVE TO SEE HOW WE BEGIN
TO WORK NATIONALLY AS WELL AS
STATEWIDE WITH BREAKS THROUGH
AND HEAR FROM DIFFERENT PEOPLE
ON THE COMMITTEE WHAT MIGHT BE
HAPPENING IN THEIR STATE OR IN
THEIR PARTICULAR AREA AND BUILD.
THAT WOULD BE AMAZING.
>> THANK YOU.
CRAIG AND SCOTT, DID YOU HAVE
ANYTHING TO SAY ABOUT STATES AND
EMPLOYMENT THAT MAY HELP WITH
THAT?
>> SURE.
SO WE ALSO DO -- I SHOULD SAY IN
PREFERENCE, WE HAVE MUCH
ENGAGEMENT WITH STAKE AND LOCAL
POLICY AT U.S. DEPARTMENT OF
LABOR.
WE HAVE A PROJECT ON STATE LOCAL
POLICY INTERCHANGE WITH ENGAGED
IN COLLABORATION.
WE DON'T FORCE POLICY IN FACT WE
COLLABORATE TO IN MATERIALS OF
WORK AND EMPLOYMENT-RELATED
FACETS LIKE ACCESSIBLE
TECHNOLOGY, TRANSPORTATION,
ETCETERA.
IF YOU FOR INSTANCE DO A SEARCH
ON GOOGLE OR BING FOR ODAT AND
STATE POLICY YOU CAN FIND MORE
ABOUT OUR WORK MATTERS REPORT
AND OTHER FOCUSES ON THE STATE
AND I CONCUR WITH WHAT WAS
SHARED ABOUT THAT ENGAGEMENT IN
TERMS OF AT THE STATE LOCAL
LEVEL IN ADDITION TO THE WORK
NATIONALLY AND THANK YOU ALSO,
JULIE, IS IT?
I'LL BE HAPPY TO COLLABORATE ON
YOUR STUDY BECAUSE I THINK IT
WOULD BE COMPLEMENTARY AND WE'RE
FOCUSSED ON POLICIES, PRACTICES
AND SOLUTIONS AND BARRIERS AND
IT'S MORE CENTERED ON THAT AND
YOUR SOUNDS MORE LIKE RESEARCH
AND WOULD BE COMPLIMENTARY TO
LEARN ABOUT QUALITATIVE OR
QUANTITATIVE STUDY AND IT MAY BE
HELPFUL FOR THAT AND OTHER
RESEARCH COMING OUT TO HELP
INFORMING THE PROJECT SUPPORT
SERVICES FOR EMPLOYMENT OF YOUNG
ADULTS IN THE AUTISM SPECTRUM
AND WHAT WE'RE THINKING ABOUT
FOR THE NEXT THREE YEARS THROUGH
2024 AND THAT INCLUDES ALSO WHAT
WE'RE LEARNING FOR THE LISTENING
SESSION ETCETERA.
WE CAN TALK OFF-LINE ON THAT BUT
I'M GLAD WE HAD CONVERGENCE ON
THIS AND THIS IS DELIGHTFUL THAT
FOLKS FEEL AS EQUALLY PASSIONATE
AND COMMUNICATION AND OTHER
QUALITY OF LIFE FOR CHILDREN,
YOUTH AND ADULTS ON THE AUTISM
SPECTRUM THROUGH THE LIFE
COURSE.
THIS IS WONDERFUL.
>> THANK YOU, SCOTT AND.
NEXT TO JENNY MAY FAN.
>> THANK YOU TO THE ORAL PUBLIC
COMMENTERS AND ALSO THOSE WHO
SUBMITTED WRITTEN COMMENTS TO
THE IACC.
I APPRECIATE PEOPLE WHO CHIMED
IN AND TO REITERATE WHAT OTHERS
HAVE SAID SUBMITTING COMMENTS
ABOUT AACUs AND MAKE BEING IT A
PRIORITY FOR RESEARCH AND THE
INVENTIONS.
I WANT TO ADD A PLUG ON THOSE
WHO ARE NON-NATIVE ENGLISH
COMMUNICA
COMMUNICATORS.
WHEN WE TALK ABOUT AACUs THERE'S
PLENTY OF FAMILIES WHO MAY NOT
BE SPEAKING ENGLISH AS THEIR
PRIMARY LANGUAGE MAYBE IT'S
THEIR SECOND OR THIRD.
IN THE CONVERSATION I HOPE WE
ALSO KEEP IN MIND THAT ENGLISH
MAY NOT BE A PRIMARY LANGUAGE
FOR CERTAIN AUTISTIC FAMILIES.
THREW.
>> THANK YOU FOR THE COMMENT,
JENNY.
WE HAVE A FEW MINUTES LEFT FOR
ANY OTHER COMMENTS ANYONE HAS.
DOES ANYBODY HAVE ANYTHING ELSE
THEY'D LIKE TO SHARE?
HARI, I SAW YOU TURNED ON YOUR
CAMERA.
>> I CAN SEND THE COMMENT.
>> PERFECT.
>> ALSO, AS EDLYN TOUCHED ON,
THERE'S A HUGE ISSUE AND SO MANY
THINGS GOING ON BEHIND THE
SCENES.
THERE'S ANXIETY AROUND BEING
EXPECTED TO TYPE AT THE SPEED OF
INSTANT SPOKEN LANGUAGE SO EACH
CONVERSATION HAS THE SAME
PRESSURE OF A HIGHER PRESSURE
INTERVIEW.
IT'S THE LACK OF BODY SCHEMA SO
TRYING TO DRIVE A CAR WITH A
LOOSE STEERING WHEEL WHILE
THINKING ON THE SPOT AND
THINKING OF COHERENT RESPONSES.
IT'S THE ADHD AND SENSORY STUFF
ALL WORKING TO DISTRACT YOU.
WE REALLY, REALLY NEED RESEARCH
TO UNDERSTANDING SENSORY AND
BODY SCHEMA ISSUES SO WE CAN
BETTER SUPPORT COMMUNICATION
CHALLENGES ITSELF.
>> THANK YOU SO MUCH FOR THAT
COMMENT, HARI.
AND THANK YOU STEVEN FOR
ASSISTING US IN READING THE
COMMENTS.
I HAVE TWO MINUTES LEFT.
ANY LAST COMMENTS BEFORE WE
BREAK AISHA.
>> I WANTED TO SAY THAT ALL THE
COMMENTS REGARDING ETIOLOGY OR
THE CAUSES OF AUTISM AND AN
APPRECIATE THE COMMITTEE MEMBERS
WHO PROVIDED COMMENTS.
I THINK A LOT OF TIMES PEOPLE
DON'T WANT TO FOCUS ON ETIOLOGY
AND THERE SHOULD BE A PRIORITY
AROUND SERVICES FOR PEOPLE WITH
AUTISM.
THIS DEMONSTRATES THERE IS STILL
SIGNIFICANT INTEREST IN WHAT
CAUSES AUTISM.
I WANT TO RESPOND TO SOME OF
THOSE COMMENTS SPECIFICALLY THE
ONES ASKING ABOUT PARENTS
PASSING GENETIC PREMARKERS FOR
AUTISM TO THEIR CHILDREN AND
POINT OUT THERE'S ONGOING
RESEARCH ESPECIALLY THROUGH THE-
SAFARI GROUP- MARKERS FOR
AUTISM TO THEIR CHILDREN AND
POINT OUT THERE'S ONGOING
RESEARCH ESPECIALLY THROUGH THE-
SAFARI GROUPMARKERS FOR
AUTISM TO THEIR CHILDREN AND
POINT OUT THERE'S ONGOING
RESEARCH ESPECIALLY THROUGH THE-
SAFARI GROUP I ALSO WANTED TO
SAY THERE WAS ONE PARTICULAR
COMMENT THAT STILL FOCUSSED ON
VACCINES AND I WANT IT RECORDED
THAT'S A DANGEROUS DIRECTION TO
TRY TO POINT ANYBODY TOWARDS
VACCINES ESPECIALLY AN IN ERA
WITH AN ONGOING PANDEMIC.
I'D LIKE TO SAY AS AN
EPIDEMIOLOGIST THAT STUDIES HAVE
SHOWN THAT VACCINES ARE NOT
WITHIN THE CAUSAL PATHWAY OF
AUTISM.
THANK YOU.
>> THANK YOU.
ALL RIGHT, WE'RE AT 1:55 SO
WE'RE RIGHT ON TAKE TO TAKE A
BREAK.
WE WILL BE RETURNING AT 2:10 FOR
THE NEXT SESSION WE'RE LOOKING
FORWARD TO ON PERSPECTIVES ON
ADDRESSING DIVERSE COMMUNICATION
IN AUTISM.
SO JOSH, DO YOU HAVE ANY OTHER
COMMENTS BEFORE WE GO TO THE
BREAK?
AND NOT HEARING ANY --
>> SORRY, I WANT TO THANK
EVERYONE FOR THEIR ACTIVE AND
THOUGHTFUL CONSIDERATION OF THE
PUBLIC COMMENTS AND I'M LOOKING
FORWARD TO IN THE CONTEXT OF ALL
THE COMMENTS ON ASSISTED
COMMUNICATION TO HEARING ABOUT
THE LATEST RESEARCH AND ALSO
HEARING FROM INDIVIDUALS' LIVED
EXPERIENCE USING THE TECHNOLOGY.
LOOKING FORWARD TO THE PANEL AND
SEE YOU AFTER THE BREAK.
>> IT'S MY PLEASURE TO WELCOME
EVERYONE BACK.
IN THE NEXT SECTION WE WILL HAVE
A PANEL ON PERSPECTIVES ON
ADDRESSING DIVERSE COMMUNICATION
NEEDS IN AUTISM.
WE'VE HEARD FROM MANY OF YOU OUT
THERE IN THE COMMUNITY AS WELL
AS AROUND THE TABLE, THE VIRTUAL
TABLE AROUND THE IMPORTANCE OF
UNDERSTANDING THE NEEDS OF
AUTISTIC INDIVIDUALS MINIMALLY
VERBAL OR NON-SPEAKING AND THOSE
WHO MAY USING OR BENEFIT FROM
ALTERNATIVE AND AUGMENTATIVE
METHODS AND WE HEARD THAT IN THE
COMMENTS WRITTEN AND ORAL
DELIVERED.
IN RESPONSE TO THE FEEDBACK, I
WANT TO THANK SUSAN AND STAFF ON
ASSEMBLING THE PANEL ON
PERSPECTIVES OF AUTISTIC
INDIVIDUALS AND FAMILY MEMBERS.
I WANT TO START BY INTRODUCING
JUDITH COOPER.
SHE HAS LONG BEEN A DESIGNATED
ALTERNATE ON THE IACC WHERE SHE
REPRESENTS THE INSTITUTE AND
NICHD SHE OVERSEES RESEARCH
RELATED TO AUTISM AND
COMMUNICATION BOTH AT NIDCD AND
ACROSS NIH.
JUDITH, A PLEASURE TO WELCOMING
YOU HERE AND LOOKING FORWARD TO
YOUR INTRODUCTION TO THE PANEL.
>> THANK YOU, JOSH.
GOOD AFTERNOON, EVERYONE.
THANK YOU TO DR. GORDON AND
DR. DANIELS FOR AN OPPORTUNITY
TO KICK OFF OUR PANEL ON
COMMUNICATION AND AUTISM.
MY FOCUS IS TO PROVIDE YOU WITH
A BRIEF OVERVIEW OF NIH'S ROLE
RELATED TO COMMUNICATION IN
AUTISM.
I'LL ADDRESS THE JOINT ACTIONS
AND ATTENTION TO THIS TOPIC THAT
HAVE BEEN PAID BY NIH THROUGH
THE YEARS PRIMARILY BY NIH
COLLEAGUES AND THEIR INSTITUTES
REPRESENTED BOTH HERE ON THE
IACC AND LISTED ON THE SLIDE.
THERE ARE OTHER FEDERAL AGENCIES
SUCH AS THE DEPARTMENT OF
EDUCATION, DOD, HRSA AND
NON-FEDERAL ORGANIZATIONS WHO
ALSO SUPPORTED RESEARCH ON THE
TOPIC BUT I WON'T BE COVERING
THEIR SUPPORT TODAY.
MY SECOND PURPOSE IS TO
HIGHLIGHT SOME ACTIVITIES
SPECIFICALLY LED BY MY INSTITUTE
THE NATIONAL INSTITUTE ON
DEAFNESS AND OTHER COMMUNICATION
DISORDERS.
AS WE RECOGNIZE AND WE CERTAINLY
HEARD TODAY, INDIVIDUALS ON THE
AUTISM SPECTRUM MAY HAVE A
VARIETY OF COMMUNICATION ISSUES
AND CHALLENGES AS ILLUSTRATED ON
THE SLIDE AND THOSE ISSUES AND
CHALLENGES CAN VARY IN SEVERITY
AT DIFFERENT POINTS IN
DEVELOPMENT.
THIS COMMUNICATION -- SORRY.
THIS COMMUNICATION HAS LONG BEEN
RECOGNIZED BY NIH REFLECTED IN
DECADES OF FUNDING OF
INVESTIGATOR-INITIATED RESEARCH
GRANTS AS WELL AS SPECIAL
REQUESTS FOR NETWORKS, CENTERS
AND OTHER SOLICITATIONS.
AS FAR BACK AS 1997 WITH THE
START OF THE AUTISM PROGRAM AND
WITH EACH ISSUANCE OF REQUEST
FOR CENTERS AND NETWORKS, WE
HIGHLIGHTED COMMUNICATION AND
AUTISM SPECTRUM DISORDER AND WE
LOOKED AT DISORDERS OF
COMMUNICATION AND ASSESSMENT AND
INTERVENTIONS FOR NON-VERBAL
SCHOOL AGE CHILDREN WITH AUTISM.
NOT EVERY AUTISM RESEARCHER CAN
OR SHOULD LEAD A LARGE NETWORK
AND THUS THE NIH OFFERED SINCE
1998 AND RE-ISSUED EVERY FEW
YEARS SOLICITATION WITH RESEARCH
AND SUPPORT FOR RESEARCH ON
COMMUNICATION WAS NOTED.
ON THE SLIDE YOU CAN SEE
EXAMPLES OF OUR WORDING THAT HAS
APPEARED THROUGH THE YEARS AS WE
POINTED RESEARCHERS TO
PARTICULAR TOPICS OF INTEREST TO
THE NIH INCLUDING COMMUNICATION
SKILLS, VARIOUS IMPAIRMENTS THAT
IMPACT COMMUNICATION, PREDICTORS
OF DEVELOPING EXPRESSIVE
LANGUAGE ABILITIES AND
INTERVENTIONS FOCUSSED ON
COMMUNICATION.
LET ME NOW SHIFT TO NIDCD AND
HIGHLIGHT SOME OTHER SPECIFIC
ACTIVITIES RELEVANT TO OUR
TOPIC.
WE SUPPORT RESEARCH AND RESEARCH
TRAINING IN THE NORMAL AND
DISORDER PROCESSES OF HEARING,
BALANCE, TASTE, SMELL, VOICE,
SPEECH AND LANGUAGE.
NIDCD HAS A LONG COMMITMENT TO
AND SUPPORT OF AUTISM RESEARCH
BEYOND THE ACTIVITIES MENTIONED.
WITHOUT OUR RESEARCH SUPPORT NOT
SURPRISINGLY, PRIMARILY FOCUSSED
ON SPEECH AND LANGUAGE
DIFFERENCES AND CHALLENGES, BUT
ALSO INCLUDING OTHER AREAS SUCH
AS HEARING AND TASTE.
MOST THE RESEARCH ON
COMMUNICATION AND AUTISM IS
SUPPORTED BY NIDCD AND NOTED IN
BLUE.
THANKS TO DR. DANIELS FOR
PROVIDING THE DATA AND THE
SLIDE.
HERE'S BROAD THEMES IN OUR
RESEARCH PROJECTS.
COMMUNICATION PROFILES,
MINIMALLY VERBAL INDIVIDUALS AND
ALTERNATIVE AND AUGMENTATIVE
COMMUNICATION APPROACHES AND
COMMUNICATION DIFFERENCE AND
DISORDERS IN ASD SIBLINGS.
SO WHAT HAS NIDCD DONE WE ISSUED
RESEARCH SOLICITATIONS.
APOLOGIES FOR MY SLIDE IT'S GOT
A MIND OF ITS OWN.
BUT IN 2009 THINGS WENT IN A NEW
DIRECTION.
IT ALL STARTED WITH A MOTHER'S
ADVOCACY FOR HER NON-VERBAL
CHILD.
SHE HIGHLIGHTED TO ME THAT AT
THAT TIME NON-VERBAL
LOW-COMMUNICATING, MINIMALLY
VERBAL CHILDREN WITH AUTISM WERE
A NEGLECTED SUB GROUP OF THE
SPECTRUM TYPICALLY EXCLUDED FROM
RESEARCH PROJECTS AND NOT A
FOCUS OF RESEARCH.
SHE BEMOANED NON-VERBAL WERE
LOW-FUNCTIONING WITH A COMMON
PERCEPTION THESE INDIVIDUALS
HAVE LOW INTELLECTUAL ABILITIES
AND STRESSED THIS PERCEPTION WAS
IN PART BECAUSE AT THAT TIME,
MANY SUCH INDIVIDUALS HAD NO WAY
TO DEMONSTRATE THEIR COGNITIVE
CAPACITIES AND THEIR
COMMUNICATION ABILITIES.
THE ASKED HOW CAN WE CHANGE
THIS?
HOW CAN WE GET THIS POPULATION
INCLUDED IN ONGOING RESEARCH?
HOW DO WE INCREASE RESEARCH
INTEREST AND FUNDING ABOUT THIS
POPULATION?
WE ALL RECOGNIZE AND WE AGREE
AND MONTHS LATER THE NIDCD LED
AND OTHER INSTITUTES JOINED IN
CREATING FIRST A PLANNING
COMMITTEE AND THEN A WORKSHOP IN
APRIL 2010 TO FOCUS ON A SUB
GROUP OF CHILDREN WITH ASD WHO
HAD NOT DEVELOPED FUNCTIONAL
VERBAL LANGUAGE BY THE AGE OF 5
AND THE WORKSHOP WOULD ADDRESS
THE QUESTIONS ON THE SLIDE.
WHO ARE THESE CHILDREN AND WHAT
DO WE KNOW WITH THEIR
DEVELOPMENTAL TRAJECTORIES?
HOW CAN WE ASSESS THEIR SKILLS
AND KNOWLEDGE ACROSS DIFFERENT
DOMAINS RELEVANT TO LANGUAGE?
AND WHAT TREATMENTS AND
INTERVENTIONS ARE EFFECTIVE IN
IMPROVING SPOKEN LANGUAGE IN
THESE CHILDREN.
THE SCIENTIFIC KNOWLEDGE WAS
DISCUSSED, CRITICAL GAPS WERE
IDENTIFIED AS WERE RESEARCH
OPPORTUNITIES AND THE LINK ON
THE SLIDE CAN TAKE YOU TO A
SUMMARY OF THAT WORKSHOP AND THE
PARTICIPANTS.
AFTER THE WORKSHOP THE NOTABLE
SHIFT OCCURRED.
FIRST, THERE WAS A REQUEST FOR
APPLICATIONS TARGETED RESEARCH
ON NON-VERBAL SCHOOL AGE
CHILDREN WITH AUTISM THAT WAS
LED BY NIDCD BUT ALSO SUPPORT
NIMH AND THIS FUNDING
OPPORTUNITY PROVIDED COMPETITIVE
SUPPLEMENT TO RO1 HOLDERS OF
CLINICAL AUTISM GRANTS TO FOCUS
ON THE CHARACTERIZATION OF THE
POPULATION, TREATMENT PILOT
STUDIES AND ASSESSMENT PILOT
STUDIES.
SUBSEQUENT TO THE WORKSHOP, A
SMALL GROUP OF NIH STAFF AND
AUTISM EXPERTS WERE ORGANIZED TO
FOCUS ON ONE WORKSHOP
RECOMMENDATION, HOW TO BEST
ASSESS THIS POPULATION.
THE BETWEEN 2010 AND 2012 THIS
GROUP DEALT WITH PARTICULAR
AREAS OF ASSESSMENT IMPORTANT
FOR THIS POPULATION AND THEN
FINALLY IN 2013 AS AN OUT GROWTH
AND RESULT OF THE WORKSHOP, TWO
IMPORTANT PUBLICATIONS APPEARED
AND ARE NOTED ON THE SLIDE.
ONE, MINIMALLY VERBAL AND
NEGLECTED END OF THE SPECTRUM
AND ASSESSING THE MINIMALLY
VERBAL SCHOOL AGE CHILD.
THIS NEW FOCUS AND ATTENTION
CONTINUED.
IN 2011, NIH ISSUED A REQUEST
FOR APPLICATIONS ON PSYCHOSOCIAL
AND BEHAVIORAL INTERVENTIONS AND
IT WAS AGREED THE FUNDING
OPPORTUNITY WOULD INCLUDE
REQUEST FOR RESEARCH ON STUDIES
OF ADAPTIVE OR NOVEL TREATMENTS
FOR NON-VERBAL SCHOOL-AGED
CHILDREN WITH ASD.
THEN IN 2012, THE NIDCD
STRATEGIC PLAN, WHICH IDENTIFIED
RESEARCH PRIORITY FOR THE NEXT
FIVE YEARS INCLUDED A NEW
DIRECTION.
NIDCD'S COMMITTED TO SUPPORTING
RESEARCH EFFORTS TO IMPROVE THE
DIAGNOSIS OF ASD AND TO DEVELOP
NEW OR IMPROVED EXISTING
TREATMENTS OF LANGUAGE DEFICITS
OF CHILDREN WITH ASD ESPECIALLY
SCHOOL AGE CHILDREN WITH ASD WHO
REMAIN NON VERBAL.
FYI, SUBSEQUENT NIDCD STRATEGIC
PLANS CONTAIN SIMILAR WORDING
AND INCLUDE PRIORITY AREAS
RELATED TO AUGMENTATIVE AND
ALTERNATIVE COMMUNICATION
APPROACH.
AND ALSO IN 2012 ONE OF THE
PRESTIGIOUS AND HIGHLY
COMPETITIVE CENTERS LOOKING AT
INTERVENTIONS WAS AWARDED TO A
PANEL SPEAKER.
AND FINALLY, IN 2019 AN NIDCD
CLINICAL RESEARCH CENTER
ENTITLED PREDICTING AND
OPTIMIZING LANGUAGE OUTCOMES IN
MINIMALLY VERBAL CHILDREN WITH
AUTISM SPECTRUM DISORDER WAS
AWARDED.
IN SUM, I HOPE YOU HAVE A BETTER
SENSE OF NIH'S AND NIDCD'S LONG
STANDING ENCOURAGEMENT, SUPPORT
AND FUNDING OF RESEARCH ON THE
COMMUNICATION CHALLENGES AND
NEEDS OF AUTISTIC INDIVIDUALS OF
ALL AGES.
WE ALL RECOGNIZE MANY RESEARCH
QUESTIONS AND MANY ISSUES
REMAIN.
AND MOST IMPORTANTLY RESEARCH
OPPORTUNITIES AND NEEDS COME
FROM ALL VENUES.
THE SCIENTIFIC COMMUNITY, OUR
OWN RESEARCH SOLICITATIONS,
ADVISORY PANELS SUCH AS THE IACC
AND THE DISCUSSIONS WE HEARD
TODAY AND SOMETIMES FROM THE
PLEA OF A CONCERNED MOTHER.
THANK YOU.
>> THANK YOU VERY MUCH, JUDITH I
APPRECIATE THE OVERVIEW OF THE
DEMONSTRABLE COMMITMENTS OF THE
NIH IN THIS AREA AND AS YOU
MENTIONED OF COURSE THERE ARE
OTHER PARTNERS AROUND THE TABLE
AS WAS ALSO MENTIONED DURING THE
PUBLIC COMMENT WHO ALSO SUPPORT
RESEARCH IN THIS AREA.
NOW WE'RE GOING HEAR FROM SOME
OF THE SCIENTISTS FOR CONDUCTING
RESEARCH.
THE FIRST PRESENTATION IS GOING
TO BE BY TWO SCIENTISTS
SUPPORTED ADSUPPORT
ED AS MENTIONED BY NIDCD AND
I'LL PRESENT THEM TOGETHER AND
DR. FLUSBERG WILL START.
DR. FLUSBERG A MEMBER OF OUR
IACC AND PROFESSOR IN THE
DEPARTMENT OF PSYCHOLOGICAL AND
BRAIN SCIENCES AND THE DIRECTOR
OF THE CENTER FOR AUTISM
RESEARCH EXCELLENCE AT BOSTON
UNIVERSITY.
JOINING DR. TAGER FLUSBERG IS
DR. KASARI AT THE UCLA GRADUATE
SCHOOL OF EDUCATION AND
PROFESSOR OF PSYCHIATRY AT THE
DAVID GEFFEN SCHOOL OF MEDICINE.
THEY'LL BE PRESENTING TOGETHER
ON THE TOPIC OF ADVANCING
RESEARCH ON MINIMALLY VERBAL
ASD.
>> THANK YOU, WE'LL PRESENT
SEQUENTIALLY BECAUSE I THINK
WHAT I'M GOING DO IS PRESENT
SOME RESEARCH THAT FOCUSES ON
TWO CRITICAL QUESTIONS THAT
SERVE AS A BACKDROP TO WHAT
WE'LL HEAR FROM DR. KASARI.
I'M A RESEARCH SCIENTIST AND MY
BACKGROUND AND TRAINING IS IN
DEVELOPMENTAL LINGUISTICS.
I FOCUSSED ON LANGUAGE AND
COMMUNITY BOTH IN AUTISM AND
ALSO IN RELATED NEURO
DEVELOPMENT DISORDERS BUT IT
WASN'T UNTIL 15 YEARS AGO I TURN
MID RESEARCH TO THOSE THAT
ACQUIRED LIMITED OR NO SPOKEN
LANGUAGE AND I'M GRATEFUL TO THE
LEADERSHIP AND SUPPORT FROM
DR. COOPER AT THE NIDCD AS WELL
AS LEADERS FROM FOUNDATIONS SUCH
INCLUDING AUTISM SPEAKS AND THE
SIMONS FOUNDATION.
AND THOSE WHO DEDICATED THEIR
LIVES TO THESE INDIVIDUALS FROM
WHOM WE LEARN.
I'M GOING PRESENT TWO AREAS OF
WORK THAT WE HAVE BEEN DOING AND
I'M PLEASED TO HAVE THIS
OPPORTUNITY.
I THINK IT DOVETAILS WELL WITH
SOME OF THE DISCUSSION EARLIER
AND AS I SAID SEGUES INTO THE
NEXT PRESENTATIONS.
SO FIRST I'LL TALK ABOUT NOVEL
APPROACHES TO ASSESSING
LANGUAGE.
IF WE CAN'T ASSESS LANGUAGE BOTH
SPOKEN AND PERHAPS OTHER MEANS
OF COMMUNICATION, IF WE CAN'T
ASSESS THAT ACCURATELY IN AN
INDIVIDUAL, WE DON'T HAVE A
FOUNDATION ON WHICH TO BUILD ANY
KIND OF INTERVENTIONAL
THERAPEUTIC APPROACH.
AND SECONDLY I'M GOING TO
EXPLORE THE MORE BASIC QUESTION
OF WHY SPOKEN LANGUAGE MIGHT BE
SO PROFOUNDLY IMPAIRED IN
AUTISM.
THERE'S ENORMOUS HETEROGENEITY
AND WE DO HAVE TO TREAT EACH
INDIVIDUAL AS AN INDIVIDUAL
BECAUSE NO ONE SIZE FITS ALL.
SO WE DID CALL THIS THE
NEGLECTED END OF THE SPECTRUM
WHICH WAS PERFECTLY TRUE BUT A
PARENT RECENTLY SAID WELL, WE
FEEL WE'RE COMPLETELY FORGOTTEN
SO I RENAMED OUR GROUP THE
FORGOTTEN END OF THE SPECTRUM.
SO FIRST I JUST WANT TO PRESENT
SOME VERY BASIC DATA ON THE
RECEPTIVE AND EXPRESSIVE
LANGUAGE SKILLS AND THIS IS
BASED ON A LARGE COHORT THAT WE
HAD EVALUATED.
THE EVALUATION WAS PARENT
REPORT.
WE PROVIDED A LARGE LIST OF
WORDS AND THE PARENT CHECKED OFF
WHICH WORDS THEIR CHILD WHO WAS
BETWEEN THE AGES OF 5 AND 16
WHICH WORDS THEY UNDERSTOOD AND
WHICH WORDS THEY WERE ABLE TO
EXPRESS.
SO THIS SHOWS THEIR EXPRESSIVE
VOCABULARY AND YOU CAN SEE THE
LARGEST OF PARENTS REPORTED VERY
FEW OR ZERO WORDS AND THERE'S
NOT MUCH BEYOND THAT.
FOR RECEPTIVE WE SEE A DIFFERENT
DISTRIBUTION BECAUSE SOME OF THE
PARTICIPANTS WERE EXPECTED TO
HAVE LITTLE UNDERSTANDING OF
SPOKEN WORDS BUT THERE'S MORE
VARIABILITY WITHIN THAT AND WE
WERE INTERESTED IN HOW CAN WE
CAPTURE RECEPTIVE VOCABULARY
THAT'S WHAT WE TURNED OUR
ATTENTION TO INITIALLY HOW TO DO
THIS.
STANDARDIZED TESTS AS WE KNOW
MAY NOT ALWAYS CAPTURE THE RANGE
OF RECEPTIVE OR EVEN EXPRESSIVE
LANGUAGE ABILITIES IN THIS
POPULATION AND WHILE WE WROTE A
PAPER HOW TO ASSESS WE DID IN
FACT AGREE THAT THERE WAS
SIGNIFICANT LIMITATIONS.
SO WE NEED TO EXPLORE NOVEL
APPROACHES FROM THE STANDARDIZED
SO WE LOOKED AT ALTERNATIVE WAYS
TO EXPRESS RECEPTIVE
VOCABULARIES.
WE ADMINISTERED TO A SMALL
COHORT OF ADOLESCENTS.
THE PEABODY PICTURE VOCABULARY
TEST, NEXT, YOU SHOW AN ARRAY OF
PICTURES, SAY A WORD AND THE
PARTICIPANT HAS TO POINT TO THE
PICTURE THAT MATCHES THE WORD.
THEN WE HAD A PARENT REPORT WORD
LIST AND THAT'S A METHOD THAT'S
BEEN WIDELY VALIDATED IN THE
FIELD OF LANGUAGE DEVELOPMENT.
THEN WE TRIED MOFL METHODS.
FIRST WE PICKED UP ON THE IDEA
OF EYE TRACKING.
COULD WE USE EYE TRACKING?
IN THIS METHOD WE SAY A WORD,
DOG.
AND THE PARTICIPANT IS NOT
INSTRUCTED IN ANY WAY BUT YOU
SEE FROM THE GREEN DOTS THOSE
GREEN DOTS REPRESENT THE NUMBER
OF TIMES THE PARTICIPANT LOOKS
AT THAT PICTURE VERSUS A PICTURE
YOU SEE A BIRD.
WE THEN ADAPTED USING A TOUCH
SCREEN.
THIS WAS KIND OF A BIT OLD
SCHOOL.
YOU CAN TELL WE DID THIS QUITE A
LONG TIME AGO.
TODAY WE WOULD CERTAINLY BE
USING AN iPAD WHICH EVERYBODY
ENJOYS SO MUCH MORE.
THIS SHOWS ACROSS SEVERAL BLOCKS
OF TRIALS, IN RED YOU CAN SEE
THE NUMBER OF TIMES THE
ADOLESCENTS IN OUR SAMPLE LOOKED
AT HOW MUCH TIME THEY SPENT
LOOKING AT THE TARGET PICTURE,
THE DOG OR WE HAD A LARGE NUMBER
OF WORDS THAT WE TESTED INSTEAD
OF HOW MUCH TIME THEY SPENT
LOOKING AT THE BIRD.
AND WHAT YOU CAN SEE IS THAT EYE
TRACKING WAS USEFUL.
AND WE LOOKED AT THE VALIDITY
AND CORRELATION, HOW WELL
MATCHED, HOW CONSISTENT WAS
RESPONDING ACROSS OUR NOVEL
METHODS OF EYE TRACKING AND
TOUCH SCREEN AND TRADITIONAL
PARENT RECORD AND PPT AND YOU
CAN SEE THE CORRELATIONS BETWEEN
THE NOVEL METHODS AND THE
STANDARD METHODS ARE STRONG AND
HIGHLY SIGNIFICANT HOWEVER, I
WANT TO OUT IN OUT WHAT I'M NOT
PRESENTING HERE IS THERE WERE
SIGNIFICANT INDIVIDUAL
DIFFERENCES IN WHICH METHOD WAS
OPTIMAL.
SO WE DID HAVE PARTICIPANTS WHO
WERE FANTASTIC WITH THE TOUCH
SCREEN BUT WHOSE EYE TRACKING
WAS NOT A RELIABLE INDICATOR OF
THEIR UNDERSTANDING OF WORDS.
WE THEN WANTED TO DEVELOP NOVEL
APPROACHES.
THIS IS NOT REALLY NOVEL BUT WE
WANTED TO CAPTURE SPOKEN
LANGUAGE THEIR EXPRESSIVE
LANGUAGE AND COMMUNICATION
SKILLS.
THERE'S A LONG TRADITION TO
COLLECT NATURAL LANGUAGE SAMPLES
AN INDIVIDUAL, CHILD INTERACTING
WITH ANOTHER INDIVIDUAL FOR THE
MOST PART FOR VERY YOUNG
CHILDREN WE RELY ON PARENT-CHILD
INTERACTION AND FOR OLDER
INDIVIDUALS WE RELY ON AN
EXAMINER.
WHAT WE DIDN'T HAVE IN THE FIELD
WAS A STANDARD PROTOCOL FOR
WHICH WE COULD COLLECT A SAMPLE
AND THIS IS CRITICAL BECAUSE
WITHOUT A STANDARD PROTOCOL, WE
CAN'T MAKE COMPARISONS ACROSS
DIFFERENT STUDIES AND APPROACHES
TO LOOKING AT SPOKEN LANGUAGE.
WE DEVELOPED ELSA ELICITING
LANGUAGE SAMPLES FOR ANALYSIS.
AND WE DEVELOPED TWO VERSIONS.
ONE FOR TODDLERS AND PRE COOLERS
AND ELSA A IS FOR OLDER CHILDREN
AND ADOLESCENTS.
IT'S A SEQUENCE OF DIFFERENT
ACTIVITIES THAT WE SELECTED
BASED ON A LOT OF PILOTING WORK
AND WE FOUND DIFFERENT
ACTIVITIES KEEPS THE INDIVIDUAL
HIGHLY ENGAGED AND ENJOYED AND
WE WERE ABLE TO COLLECT SAMPLES
AVERAGING 20 TO 25 MINUTES
WITHOUT PARTICIPANTS DECIDING
THEY REALLY DIDN'T WANT TO BE
INVOLVED IN THIS ANYMORE.
IT WAS FUN FOR THEM.
WE WANTED TO LOOK AT WHO COULD
ADMINISTER ELSA.
WE DEVELOPED IT IN THE LAB AND
HAD OUR TRAINED EXAMINERS DO
THIS.
QUE WA -- WE WANTED TO KNOW COULD
PARENTS DO THIS IN THE HOME
BECAUSE THAT WOULD OPEN UP A
WHOLE OTHER WAY OF PICKING UP AN
INDIVIDUAL CHILD'S EXPRESSIVE
LANGUAGE SKILLS.
AND WE TESTED THEM IN THE LAB
WITH THE EXAMINER AND THOSE SAME
ONES THAT PARENTS WE SENT THE
PARENTS HOME WITH A KIT AND
INSTRUCTIONS AND VIDEOS AND
HELPED GUIDE THEM AND LEFT IT TO
THEM.
SAME FOR FREQUENCY OF WORDS AND
CONVERSATIONAL TERMS.
THE PARENTS ARE DOING SO MUCH
MORE AND THIS IS IN THE SAME
UNIT OF TIME PER MINUTE BUT THEY
ARE JUST MUCH MORE ACTIVELY
ENGAGED WITH THEIR CHILD.
WELL, WHAT ABOUT THE CHILD?
THEY TOO SPOKE TWICE AS MUCH
WITH THEIR PARENT THAN THE
EXAMINERS TWICE AS MANY WORDS
AND ABOUT TWICE AS MANY
CONVERSATIONAL TERMS.
THERE'S OF COURSE ENORMOUS
VARIABILITY BUT WE FOUND
CONSISTENTLY PARENTS WERE REALLY
USEFUL IN ELICITING THESE
EXPRESSIVE LANGUAGE SAMPLES FROM
THEIR CHILDREN.
AND WE THINK THIS IS VERY
PROMISING AND WE'VE BEEN VERY
EXCITED TO SEE MORE AND MORE
PAPERS RECENTLY RETURNING TO THE
IDEA THAT THE WAY WE SHOULD BE
ASSESSING LANGUAGE IS THROUGH
NATURAL LANGUAGE SAMPLING.
SO NOW LET ME TURN TO THE SECOND
PART OF MY TALK, WHY DON'T THEY
LEARN TO SPEAK SPOKEN LANGUAGE?
WHAT IS GOING ON HERE?
THERE'S MANY POTENTIAL
EXPLANATIONS AND WE'RE
SCRATCHING THE SURFACE ON WHAT
WE MANAGED TO UNCOVER SO FAR.
WE BEGAN BY ASKING ABOUT
BEHAVIORAL PREDICTORS, IMPAIRED
UNDERSTANDING OF INTENTIONALITY
AND COMMUNICATION OR JOINT
ATTENTION SKILLS, SYMBOLIC
DEFICITS REPRESENTED THROUGH
PLAY, IMPAIRED IMITATION SKILLS
WHICH WE EVALUATE USING MANUAL
IMITATION, CAN THEY COPY OBJECT
AND HAND MOVEMENTS AND ALSO
INTELLECTUAL DISABILITY OR THE
INDIVIDUAL'S LEVEL OF NON-VERBAL
COGNITION.
WE WERE ALSO INTERESTED IN
EXPLORING SPEECH MOTOR
IMPAIRMENTS IN THIS POPULATION.
FINALLY, I'LL TALK ABOUT
AUDITORY PROCESSING IMPAIRMENTS
WHICH WE HYPOTHESIZE WILL BE
MOST RELATED TO THE VARIATION
AND RECEPTIVE LANGUAGE SKILLS
THAT I TALKED ABOUT EARLIER.
LET ME TALK ABOUT THE BEHAVIORAL
CORRELATES OF EXPRESSIVE
LANGUAGE.
WE HAD ALMOST 60 ADOLESCENTS 5
TO 16 YEARS OLD AND WE HAD
OBJECTIVE MEASURES OF DIFFERENT
ASPECTS OF JOINT ATTENTION FROM
BEHAVIORAL REGULATION TO
INITIATION TO RESPONSE TO JOINT
ATTENTION AND OBJECTIVE MEASURE
OF THEIR DEVELOPMENTAL PLAY
SKILLS, IMITATION, NON-VERBAL
COGNITION AND AGE WHICH VARIED.
WE ASKED TO WHAT EXTENT ARE
THESE CORRELATED SO THEIR
EXPRESSIVE VOCABULARY?
WHAT WE FOUND WAS THAT IN THESE
OLDER INDIVIDUALS JOINT
ATTENTION WAS NOT A SIGNIFICANT
PREDICTOR AND NEITHER WAS AGE.
WE DID FIND HOWEVER, THAT
COGNITIVE LEVEL, IMITATION AND
PLAY WERE ALL SIGNIFICANTLY
RELATED AND EVEN WHEN WE
CONTROLLED FOR NON-VERBAL
COGNITION, PLAY AND IMITATION,
TWO FOUNDATIONAL SOCIAL
COMMUNICATION SKILLS WERE
SIGNIFICANTLY CORRELATED.
BUT WHEN WE ASKED STATISTICALLY
WHAT'S THE MOST SIGNIFICANT
PREDICTOR, THE ONE THAT CAME OUT
WAS IMITATION.
SO THOSE OLDER CHILDREN AND
ADOLESCENT WHO'S HAD BETTER
IMITATION SKILLS WOULD HAVE
SOMEWHAT HIGHER EXPRESSIVE
VOCABULARY.
WHAT I THINK THIS WORK ON
BEHAVIORAL CORRELATES TELLS US
IS THAT IT'S REALLY IMPORTANT TO
BE PAYING ATTENTION TO THE
BEHAVIORAL PROFILE OF AN
INDIVIDUAL BECAUSE WE NEED TO
THINK ABOUT PERHAPS TRAINING
SOME OF THESE CRITICAL SKILLS.
THE REASON JOINT ATTENTION WAS
NOT SIGNIFICANTLY CORRELATED IN
THESE OLDER INDIVIDUALS WAS THAT
MANY OF THEM IN FACT DID HAVE
JOINT ATTENTION SKILLS.
THAT'S NOT TRUE FOR MUCH YOUNGER
CHILDREN WITH AUTISM WHERE WE
NEED TO FOCUS OUR INTERVENTIONS
ON JOINT ATTENTION AS A
FOUNDATIONAL PRECURSOR TO
LANGUAGE BUT WE NEED TO BE
CONCERNED WITH THE FULL RAY OF
BEHAVIORAL PREDICTORS.
SO WHAT ABOUT SPEECH MOTOR
IMPAIRMENT?
WE WERE INTERESTED IN THIS
NEUROLOGICAL DISORDER WHICH
OCCURS IN PEOPLE WITHOUT AUTISM
AS WELL WITH APRAXIA IN SPEECH
GOES TO SPEECH IMPAIRMENT,
PRECISION AND CONSISTENCY AND
IT'S ABOUT SPEECH PLANNING
PRIMARILY AND IT'S
NEUROLOGICALLY BASED AND WE WERE
ASKING THE QUESTION, DO
MINIMALLY VERBAL -- DO SOME
MINIMALLY VERBAL CHILDREN HAVE
CO-OCCURRING CHILDHOOD APRAXIA
OF SPEECH?
WE KNEW FROM OTHER WORK IN THE
FIELD THIS IS NOT TRUE FOR SOME
INDIVIDUALS WITH AUTISM THOUGH
THEY MAY HAVE OTHER SPEECH
ISSUES THEY DON'T HAVE THIS MORE
SEVERE ISSUE OF CHILDHOOD
APRAXIA OF SPEECH.
SO WE COLLECTED AND HAD SOME
STRUCTURED PROTOCOL FOR
COLLECTING SPEECH PRODUCTION.
THIS WAS JUST REPEATING WORDS
AND THEN HAD THEM CODED BY THREE
EXPERT SPEECH THERAPIST TO CODE
FOR CIS.
WHAT WE FOUND WAS THAT THERE
WERE INDEED HIGH RATES OF CAS.
WE SAW ON THE LEFT ABOUT A
QUARTER OF THE SAMPLE DID NOT
SHOW ANY SPEECH MOTOR
IMPAIRMENTS.
A LITTLE MORE THAN A QUARTER HAD
SOME SPEECH DISORDERS BUT NOT
SUFFICIENTLY SEVERE TO CALL IT
CAS.
ABOUT A QUARTER DID HAVE CAS AND
ABOUT A QUARTER WERE COMPLETELY
NON VERBAL AND YOU COULD NOT
CODE FOR SPEECH MOTOR PROBLEMS
IF THERE WAS NO SPEECH
PRODUCTION AT ALL.
IN FACT WE MIGHT ARGUE ABOUT 75%
HAVE SOME SPEECH MOTOR DISORDER
AND I WOULD SAY WE ARE NOW
CONTINUING TO TRY AND UNRAVEL
WHAT THIS MEANS IN A NEW COHORT
OF CHILDREN.
SO NOW LET ME TURN TO AUDITORY
PROCESSING.
YOU SEE EMILY ONE OF OUR MOST
FANTASTIC PARTICIPANTS THE MOST
TOLERANT YOUNG WOMEN I MET AND
YOU SEE HER HERE COVERING HER
EARS AND THIS IS SOMETHING WE
SEE A LOT IN PEOPLE WITH AUTISM
BECAUSE THEY HAVE AUDITORY
SENSITIVITIES AND SOMETHING WE
KNOW IS QUITE EXTENSIVE AND
INTERESTED TO WHAT EXTENT ARE
THESE AUDITORY SENSORY
SENSITIVITIES RELATED TO THEIR
RECEPTIVE LANGUAGE.
AND WE HAD OBSERVATIONAL CODING,
WE VIDEO TAPED A GROUP OF
MINIMALLY AND LOW-VERBAL
AUTISTIC CHILDREN IN
ADOLESCENTS.
THOSE ARE SHOWN IN RED AND WE
HAD A GROUP WHO WERE AGE AND SEX
MATCHED VERBAL AUTISTIC CHILDREN
SHOWN IN BLUE HERE.
AND DURING ABOUT A 20-MINUTE
INTERACTION, WE CODED
OBSERVATIONS OF DIFFERENT
BEHAVIORS THE INDIVIDUAL WOULD
EXHIBIT AND LOOKS LIKE THEY HAVE
SOME SORT OF AUDITORY SENSORY
ISSUE.
EITHER SENSORY SEEKING OR
SENSORY AVOIDANCE FOR FILTERING.
AND WHAT YOU CAN SEE ON THIS
GRAPH IS THAT IN TERMS OF VISUAL
SENSORY SENSITIVITIES, THE TWO
GROUPS WERE EQUIVALENT.
HOWEVER, WHEN WE LOOKED AT THEIR
AUDITORY SENSORY SENSITIVITIES,
WE SAW FAR MORE IN THE MINIMALLY
VERBAL GROUP.
AND HERE YOU SEE THE PERCENTAGE
WHERE WE'RE SHOWING WHAT'S THE
RELATIONSHIP BETWEEN THIS AND
THEIR RECEPTIVE LANGUAGE AND WE
SEE THE MORE TIME THAT AN
INDIVIDUAL IN THIS STUDY SPENT
COVERING THEIR EARS OR SHOWING
ANY OTHER KIND OF AUDITORY
PROCESSING PROBLEM, THE LOWER
THEIR RECEPTIVE LANGUAGE SKILLS.
FINALLY, WE LOOKED FOR WHETHER
WE COULD IDENTIFY A GRAY MARKER
FOR THE AUDITORY PROCESSING
DIFFICULTIES AND MINIMALLY AND
LOW VERBAL ADOLESCENT.
YOU SEE EMILY BEING FITTED WITH
OUR EEG GAP AND WE USE
ELECTROPHYSIOLOGY BECAUSE IT'S
VERY TOLERANT AND WE WERE VERY
SUCCESSFUL IN GETTING MOST OF
OUR PARTICIPANTS TO BE ABLE TO
PROVIDE US WITH GOOD HIGH
QUALITY DATA USING
ELECTROPHYSIOLOGY.
WHAT WE DID WAS WHILE EMILY IS
SITTING THERE, SHE'S JUST
HEARING A WHOLE SERIES OF TONES
AND MOST ARE THE SAME REPEATED
TONE OVER AND OVER AND
OCCASIONALLY ABOUT 15% OF THE
TIME THE TONE WILL BE EITHER
LOUDER OR SOFTER AND THAT WE CAN
CALL OUR DEVIANT TERM.
WHEN YOU'RE LISTENING TO A
STREAM OF SOUNDS LIKE THAT THE
BRAIN RESPONDS DIFFERENTLY TO
THE SO-CALLED DEVIANT SOUND AND
YOU SEE THAT HERE IN THE
TOPOGRAPH THE HIGHER AMPLITUDE
AND THE RESPONSE TO THE DEVIANT
SOUND WE FOUND THE RESPONSE TO
THE DEVIANT SOUND WAS RELATE TO
THE AMOUNT OF TIME THEY SPENT
EXHIBITING THOSE AUDITORY
SENSORY SENSITIVITIES.
THE AMPLITUDE WAS SMALLER.
THE BRAIN IS NOT RESPONDING AS
MUCH TO THE DIFFERENCE IN TONES
TO THOSE WITH MORE AUDITORY
SENSORY BEHAVIORS.
THERE'S CLEARLY SOMETHING
DIFFERENT IN THE BRAIN THIS IS
AN AREA WE'RE CONTINUING TO
EXPLORE IN OUR NEW CLINIC
RESEARCH CENTER GRANT.
SOME DON'T ACQUIRE LANGUAGE AND
WE HAVE METHODS FOR EXPRESSIVE
LANGUAGE BUT NEED TO TAILOR THEM
TO EACH PERSON.
WE HAVE MANY EXPLANATIONS AND
THE KEY TAKEAWAY IS THAT THERE'S
SIGNIFICANT INDIVIDUAL VARIATION
NOT ONLY IN THE METH ADDS FOR
BUT ALSO IN WHAT EXPLAINS THE
DIFFICULTIES IN ACQUIRED SPOKEN
LANGUAGE ACROSS THIS GROUP OF
INDIVIDUALS.
IT'S THE INDIVIDUAL VARIATION
THAT CAN INFORM INTERVENTION.
I WANT TO THANK MY COLLABORATORS
AND THANK THE FUNDERS OF THE
RESEARCH I PRESENTED TODAY AND
MOST ESPECIALLY TO ALL THE
FAMILIES AND CHILDREN AND
TEENAGERS WHO'VE GIVEN US SO
MUCH TIME AND SUPPORT AND
INSIGHT AND FROM WHOM WE'VE
LEARNED SO MUCH.
THANK YOU.
>> THANK YOU, HELEN FOR THAT
REALLY EXCELLENT TALK.
WE'LL NOW MOVE ON THEN TO OUR
SECOND SPEAKER, DR. KASARI WHO
WILL CONTINUE ON RESEARCH ON
MINIMALLY VERBAL ASD.
>> THANK YOU SO MUCH.
THANK YOU FOR HAVING ME FROM THE
WEST COAST, IT'S STILL MORNING
HERE.
I'M GOING TO TALK ABOUT
INTERVENTIONS FOR YOUNG
MINIMALLY VERBAL SCHOOL AGE
CHILDREN WITH AUTISM.
INTERVENTIONS FOR MINIMALLY
VERBAL INDIVIDUALS IS THEY'RE
INCREASING BUT WE HAVEN'T HAD
MANY OF THOSE PUBLISHED.
SO WE WERE INFLUENCED BY A
NUMBER OF REVIEWS A COUPLE THAT
JUDITH ALREADY MENTIONED.
WE KNOW MINIMALLY VERBAL
CHILDREN ARE OFTEN EXCLUDED FROM
INTERVENTION STUDIES EVEN AT
YOUNG AGES.
AND IN OUR ASSESSMENTS ARE
POORLY DESIGNED TO ACCURATELY
DETERMINED NEEDS.
PEOPLE ARE RELYING ON
STANDARDIZED ASSESSMENT AS WE
HEARD FROM BUT MEASURE I THINK
ARE EXCITING AND ESPECIALLY
LANGUAGE SAMPLES IN REAL-WORLD
SITUATIONS BECAUSE THERE'S MORE
LIKELY TO YIELD INFORMATION.
WE WERE ALSO INFLUENCED BY A
REVIEW OF INTERVENTIONS FROM
MINIMALLY VERBAL AND THE
OPPORTUNITY APPEARED TO BE
GREATEST IN THIS YOUNG SCHOOL
AGED YEARS, FIVE TO SEVEN YEARS
OF AGE.
THE INTERVENTIONS THEMSELVES
FOCUSSED MORE ON REQUESTING
LANGUAGE SO GETTING CHILDREN'S
NEEDS MET AND LESS ON JOINT
ATTENTION LANGUAGE.
THE WORKSHOP JUDITH MENTIONS WAS
INFLUENTIAL IN THAT WHAT WE
LEARNED WAS MOST NON-VERBAL NON
VERBAL WERE MINIMALLY VERBAL AND
DEFINED BY WORDS SPOKEN.
WE LOOKED AT THOSE WHO WITH
FEWER 20 FUNCTIONALLY WORDS WERE
CLASSIFIED AS MINIMALLY VERBAL.
YOUNG CHILDREN UNDER 5 WE
DETERMINED TO BE PRE VERBAL AND
WOULD TALK BUT THEY WERE JUST
STILL LEARNING TO TALK THANE
GROUP THERE'S STILL THE
POTENTIAL FOR SPOKEN LANGUAGE IT
DOESN'T MEAN PEOPLE DON'T
CONTINUE TO LEARN TO SPEAK AND
THERE'S REPORTS OF ADULTS
SPEAKING THEIR FIRST WORDS AS
ADULT SO ONE SHOULD NEVER NOT
HAVE FACILITATION OR
INTERVENTION FOR SPEAKING.
THE OTHER THING WE LEARNED WAS
THAT SOME CHILDREN CAN SPEAK BUT
THEY RARELY DO OR ONLY IN SOME
CONTEXT OR THEY SPEAK WITH MORE
SCRIPTED PHRASES SO FAMILIAR
PHRASES SO THEY MAY USE AFRAID
THAT ISN'T CONNECTED TO A
CONTEXT BUT USED TO COMMUNICATE
WITH THE CONTEXT AND THEN FOR
INTERVENTIONS, WHAT DO WE DO?
SO INTERVENTION IS OFTEN TO DO
JUST MORE OF THE SAME TO
INCREASE THE NUMBER OF SPEECH
AND LANGUAGE SESSION OR WORSE WE
TAKE TAKEAWAY INTERVENTIONS AND
BLAME THE CHILD FOR THEIR LACK
OF PROGRESS.
THESE SITUATIONS STILL
CONDITION.
THERE'S A LOT OF IMPORTANT
CONSIDERATIONS AROUND
INTERVENTIONS.
WHAT APPROACH SHOULD WE USE FOR
FACILITATING LANGUAGE?
ESPECIALLY SINCE EARLY
INTERVENTIONS ARE HAVING SUCCESS
WITH A THIRD NOT HAVING SPOKEN
FLUENT LANGUAGE BY THE TIME THEY
ENTER KINDERGARTEN.
HOW LONG SHOULD WE TRY THE
INTERVENTION BEFORE WE CHANGE
SOMETHING AND IF WE CHANGE
SOMETHING WHAT METRIC DO WE USE
TO DETERMINE THE RESPONSE TO THE
INTERVENTION?
WHAT DOSE IS NECESSARY AND
WHAT'S A MEANINGFUL AND
REALISTIC OUTCOME.
OUR GOAL IS TO PERSONALIZE
INTERVENTIONS WITH A MEANINGFUL
OUTCOME.
WITH THAT RECOGNITION THAT A
SINGLE INTERVENTION IS JUST NOT
GOING TO BE EFFECTIVE FOR ALL
INDIVIDUAL
INDIVIDUALS.
SO WE HAVE BEEN FOCUSSED ON
ADAPTIVE INTERVENTION DESIGNS.
DESIGNS THAT CAME OUT OF CANCER
RESEARCH OR SUBSTANCE ABUSE
RESEARCH AND APPLIED IT FOR THE
FIRST TIME TO AUTISM RESEARCH.
IT'S A WAY OF SYSTEMATIZE
PRACTICE AND THE THERAPIST
DESCRIBED AS MAGICAL IS THE
THERAPIST EVERY PARENTS WANTS
THEM TO SEE BUT THEY DON'T HAVE
THE BANDWIDTH HE OR SHE COULD
SEE AND THAT PERSON PROBABLY HAS
A LOT OF TOOLS IN THEIR TOOLBOX
AND A LOT OF GOOD CLINICAL
JUDGMENT BUT TRYING TO REM KALT
THAT ACROSS ALL THE CHILDREN
THEY SEE OR WHEN THEY TRY TO
TRAIN OTHER PRACTITIONERS IS
REALLY DIFFICULT.
SO THIS CAN SYSTEMATIZE THE
INTERVENTION WHETHER THE DOSE,
TYPE OR DELIVERY OF TREATMENT AT
ADDITION -- A DECISION STAGE AT
THE COURSE OF INTERVENTION.
WE APPLIED THIS MODEL AND
THERE'S THE CONTROVERSY USING AN
AUGMENTATIVE DEVICE MAY CHANGE
SPOKEN LANGUAGE.
IT'S A COMMON ISSUE.
I STILL HEAR THE ISSUE PARENTS
SOMETIMES DON'T WANT THEIR YOUNG
CHILDREN TO USE A DEVICE BECAUSE
THEY THINK IT WILL DELAY OR
PREVENT SPOKEN LANGUAGE.
IN FACT THERE ARE THERAPISTS
THAT ALSO HAVE THE SAME VIEW
POINT.
SO WE DID AN INTERVENTION WITH
MINIMALLY VERBAL CHILDREN WITH
AUTISM, THERE WERE 61 CHILDREN
AGES 5 TO 8.
THEY HAD FEWER THAN 20
FUNCTIONAL WORDS BASED ON OUR
ASSESSMENTS.
THEY ALREADY RECEIVED TWO YEARS
OF INTENSIVE EARLY INTERVENTION.
SO WE DIDN'T WANT TO HAVE
CHILDREN THAT HAD NEVER BEEN
EXPOSED TO INTERVENTION BUT
ACTUALLY ALREADY HAD SHOWN THEY
WERE HAVING SLOW PROGRESS
TOWARDS SPOKEN LANGUAGE.
AND ONE OF THE THINGS THAT
HAPPENS IN INTERVENTION RESEARCH
IS THAT RANDOMIZED CONTROL
TRIALS ARE DONE WITH AN
EXPERIMENTAL INTERVENTION
COMPARED TO TREATMENT AS USUAL.
AND IN THIS CASE THE CHILDREN'S
TREATMENT USUAL HADN'T BEEN VERY
SUCCESSFUL.
SO WE WANTED TO PROVIDE ALL
CHILDREN WITH SOMETHING NOVEL.
SOMETHING THEY PROBABLY HADN'T
BEEN EXPOSED TO.
SO ALL THE CHILDREN GOT ONE OF
THESE NATURALISTIC DEVELOPMENTAL
BEHAVIORAL INTERVENTIONS, IN
THIS CASE, JASPER, AND WE
BLENDED IT WITH A SPOKEN
LANGUAGE INTERVENTION REFERRED
TO AS ENHANCED MILIEU TEACHING
OUT OF VANDERBILT FROM ANN
KAISER.
ALL THE CHILDREN GOT THE SAME
TREATMENT AND CAN THE DEVICE
FACILITATE MORE SPOKEN LANGUAGE.
HALF THE CHILDREN WERE
RANDOMIZED TO RECEIVE THE DEVICE
IN THE CONTEXT OF THAT
INTERVENTION.
THE SAMPLE WAS PRIMARILY MALE.
ABOUT HALF THE CHILDREN WERE
ETHNIC RACIAL MINORITIES.
THE AVERAGE AGE WAS 6 AND THE
NUMBER OF FUNCTIONAL WORDS ON A
NUMBER OF DIFFERENT ASSESSMENTS
ALL TOGETHER WAS ABOUT 17 WORDS
AND THE NON-VERBAL SCORES I.Q.
SCORES RANGE FROM 38 TO 140.
SO INCREDIBLE HETEROGENEITY EVEN
AMONGST THE COHORT OF CHILDREN.
AND THE TWO INTERVENTIONS WERE
JASPER WHICH PRIORITIZES
ENGAGEMENT AND SOCIAL
COMMUNICATION TO TEACH LANGUAGE
AND YOU'LL SEE THE CORE DOMAINS
THERE AND ENHANCE MILIEU
TEACHING WHICH STRUCTURES
LANGUAGE PROMPTING PROCEDURES.
THEY USED TIME DELAY STRATEGIES
AND A PROMPTING PROCEDURE THAT'S
REALLY FOCUSSED AT THE CHILD'S
COMMUNICATION LEVEL.
SO HERE'S THE DESIGN WHICH IS
ACTUALLY VERY SIMPLE ONE THOUGH
IT LOOKS KIND OF BUSY.
SO THE BEHAVIORAL INTERVENTION
IS CALLED JASPER FOR SHORT.
SO CHILDREN WERE RANDOMIZED AND
IN THIS CASE IT'S A SMART DESIGN
SO THAT'S A SEQUENTIAL MULTIPLE
ASSIGNMENT RANDOMIZED TRIAL
WHICH MEANS THERE'S MORE THAN
ONE RANDOMIZATION.
CHILDREN WERE RANDOMIZED TO
RECEIVE JUS THE BLENDED
INTERVENTION OR THE BLENDED
INTERVENTION WITH AN
AUGMENTATIVE DEVICE.
THE FIRST STAGE TREATMENT WAS
FOR 12 WEEKS.
TWO SESSIONS A WEEK SO ABOUT TWO
HOURS OF INTERVENTION WITH A
THERAPIST PER WEEK.
AND AT THE END OF THAT 12-WEEK
PERIOD WE DETERMINED WHETHER THE
CHILD WAS A FAST OR SLOW
RESPONDER AND RESPONSE WAS
DETERMINED TO BE 25% IMPROVEMENT
ON THE PRIMARY OUTCOME WHICH
I'LL DESCRIBE AS A SOCIALLY
COMMUNITYIVE UTTERANCES THAT ARE
SOCIALLY RELATED.
COMMUNICATIVE UTTERANCES THAT
ARE SOCIALLY RELATED.
AND IF THEY WERE RESPONDERS THEY
COULD STAY THE SAME COURSE.
IF THEY WERE SLOW RESPONDERS AND
HAD THE AUGMENTATIVE DEVICE THEY
CAN GET ANOTHER SESSION A WEEK
AND IF THEY HAVEN'T HAVE THE
DEVICE THEY CAN BE RANDOMIZED
FOR THE DEVICE OR AN INCREASED
SESSION.
DURING THE SECOND PHASE WE ALSO
DID PARENT TRAINING
SPECIFICALLY.
SO YOU WILL SEE THERE ARE SOME
EMBEDDED INTERVENTIONS IN THE
SECOND STAGE TREATMENT.
A 20-MINUTE INTERACTION BETWEEN
THE ADULT AND THE CHILD AND
SYSTEMATIC AND THE LANGUAGE
SAMPLES WERE TRANSCRIBED USING
SALT AND WE HAD INDEPENDENT
CODERS WHO NOTED EACH UTTERANCE,
NON-SCRIPTIVE AND COMMUNICATIVE
FUNCTION AND A COMMENT OR
REQUEST AND BOTH SPOKEN AND
SPEECH-GENERATED PRODUCES
UTTERANCES WERE TRANSCRIBED.
THE PRIMARY OUTCOME IS A TOTAL
SPONTANEOUS COMMUNICATIVE
UTTERANCE.
SO WHAT DID WE FIND?
THE BLACK LINE ON THE TOP IS THE
GROUP THAT GOT THE AUGMENTATIVE
DEVICE AND THE RED LINE ARE THE
KIDS WHO HAD THE INTERVENTION
WITHOUT THE DEVICE.
AND WHAT'S INTERESTING IS THAT
THERE IS A HUGE INCREASE EVEN IN
THE FIRST 12 WEEKS OF SPOKEN --
THESE SPOKEN UTTERANCES.
SO HAVING A DEVICE MATTERED FOR
INCREASING SPOKEN LANGUAGE.
THE GROUP WITHOUT THE DEVICE WAS
MAKING SLOW AND STEADY PROGRESS
BUT NOT NEARLY AS FAST AS HAVING
THE DEVICE.
WE ALSO FOUND SIMILAR FINDINGS
FOR NOVEL WORDS AND COMMENTS.
IF YOU HAVE THE DEVICE YOU ALSO
PRODUCE MORE NOVEL WORDS AND
MORE COMMENTING OR JOINT
ATTENTION LANGUAGE.
SO THAT ANALYSIS WAS THE WHOLE
SEQUENCE.
SO STARTING WITH THE TOP HALF
AND THE BOTTOM HALF.
BUT WE CAN ALSO LOOK AT THE
EMBEDDED INTERVENTIONS.
SO WHAT HAPPENS WHEN WE TEASE
APART THE SECOND STAGE
TREATMENT.
ON THE LEFT IS THE OUTCOME OF
THE PRIMARY OUTCOME THE TOTAL
SOCIAL COMMUNICATIVE UTTERANCES
AND ON THE RIGHT SIDE IS A
DIFFERENT OUTCOME, THE CHILD
INITIATING JOINT ATTENTION.
AND YOU CAN SEE HERE THAT THE
BLACK LINE AT THE TOP ARE KIDS
WHO GOT THE SPEECH GENERATING
DEVICE AND THEN STAYED WITH THE
SPEECH GENERATING DEVICE.
THE RED LINE IN THE MIDDLE ARE
KIDS WHO STARTED WITH NO SPEECH
GENERATING DEVICE BUT THEN GOT
RANDOMIZED FOR THE
SPEECH-GENERATING DEVICE AND THE
BLUE LINE ARE THE KIDS WHO NEVER
HAD THE SPEECH GENERATING
DEVICE.
FOR BOTH OF THESE THE BLACK
LINE -- SO GETTING THE DEVICE
INCREASED THE PRIMARY OUTCOME
AND ALSO INCREASED INITIATING
JOINT ATTENTION.
AN YOU GET SOME BENEFIT IF YOU
GET THE DEVICE IN THE SECOND
STAGE AFTER THREE MONTHS BUT NOT
NEARLY AS GREAT IF YOU GET IT
RIGHT FROM THE BEGINNING.
SO THE IMPORTANCE OF THE SPEECH
GENERATING DEVICE ADDED INTO A
BEHAVIORAL INTERVENTION RIGHT
FROM THE BEGINNING IS PRETTY
CLEAR FROM THESE DATA.
APPROXIMATELY 10% OF THE CODED
UTTERANCES WERE GENERATED ON THE
SPEECH-GENERATING DEVICE.
THE MAJORITY OF WHAT KIDS WERE
SAYING WAS SPOKEN AND THAT
SURPRISED US.
AND SPOKEN LANGUAGE IF WE CAN
DEVELOP IT IS MUCH MORE
EFFICIENT THEN USING THE DEVICE
BUT FOR CHILDREN WHO NEED THE
DEVICE HAVE ACCESS TO
COMMUNICATION.
SO THAT WAS A WIN-WIN BOTH WAYS.
THE IMPORTANCE OF THE BEHAVIORAL
INTERVENTION SHOULDN'T BE
OVERLOOKED.
SO IF WE JUST GAVE A CHILD AN
SGD IT PROBABLY WOULDN'T BE
SUCCESSFUL AND REMEMBER THESE
ARE CHILDREN WHO ARE LEARNING TO
USE THE LANGUAGE THEY NEED
SUPPORT TO LEARN.
THEY NEED A CONTEXT FOR
COMMUNICATION.
IN THIS INTERVENTION WE DID
ADULT MODELLING ON THE DEVICE IN
THE CONTEXT OF PLAIN
INTERACTIONS TO PRIORITIZE
COMMUNICATION.
SO IMITATION AS HELEN SAID IN
THE FIRST TALK IS IMPORTANT AND
IT WAS IMPORTANT HERE TOO
BECAUSE CHILDREN WOULD IMITATE
US MODELLING ON THE DEVICE.
THE IMPORTANCE OF THE
INTERCHANGES BETWEEN THE
DIFFICULT AND CHILD WITHIN THE
CONTEXT OF AN INTERVENTION IS
SHOWN HERE SO THESE ARE ALL THE
CHILDREN, THE SAME DATA SET AND
IT'S SHOWING YOU THAT WHAT IS
ADULT INITIATE AND WHAT IS CHILD
INITIATED INTERACTION.
AT ENTRY WE STILL HAVE MORE
CHILD INITIATED INTERACTIONS
THAN ADULT EVEN AT THE
BEGINNING.
BUT OVER THE COURSE OF THE
INTERVENTIONS THE GRAY PART OF
THE GRAPH ARE CHILD INITIATED
INTERCHANGES AND THOSE ARE
GROWING WHERE THE BLACK PART OF
THE BAR ARE ADULT INITIATED
EXCHANGES AND THEY'RE STAYING
STABLE.
THE IMPORTANCE OF THE
INTERACTION SHOULDN'T BE
OVERLOOKED.
SO MINIMALLY VERBAL CHILDREN CAN
BE SUPPORT TECHNOLOGY, SPEECH
GENERATING DEVICES DON'T INHIBIT
THE DEVELOPMENT OF SPEECH BUT
RATHER SUPPORT THAT DEVELOPMENT.
AND THESE DEVICES PROVIDE
COMMUNICATION ACCESS SO EVEN IF
A CHILD DOESN'T DEVELOP SPOKEN
LANGUAGE IT'S IMPORTANT TO
PROVIDE ACCESS TO COMMUNICATION.
WE NEED MORE RESEARCH ON WHAT
THE ACTIVE INGREDIENTS ARE
BECAUSE THEY'RE LIKELY TO BE
MULTICOMPONENT AND NEED TO
UNDERSTAND WHAT COMPONENTS ARE
REALLY IMPORTANT FOR WHICH
CHILDREN.
WE ALSO HAVE QUESTION HOW EARLY
WE SHOULD ADD IN TECHNOLOGY TO
EARLY INTERVENTION.
WE HAVE BEEN ADDING IT IN NOW
WITH EVEN PREVERBAL CHILDREN SO
2 AND 3-YEAR-OLD CHILDREN WITH
INTEREST IN THE DEVICE.
WE FIND THEY'LL USE AN iPAD WITH
THE SOFTWARE IN THE CONTEXT OF
INTERVENTION AND THEN DISCARD IT
ONCE THEY LEARN TO SPEAK
VERBALLY MORE SO IT'S GAI
TRANSITION.
WE ALSO NEED TO UNDERSTAND THE
MECHANISM OF HOW THE SPEECH
GENERATING DEVICE PROVIDES
BENEFIT.
IS IT THE MOTOR ASPECT OF
PRESSING THE BUTTON?
IS IT THE ADDED VISUAL AND
AUDITORY SUPPORT?
WE DON'T REALLY UNDERSTAND THAT
BUT I KNOW IT'S SOMETHING JANICE
WILL TALK ABOUT NEXT AND KNOWS
MUCH MORE ABOUT BUT I THINK THAT
THAT WILL BE IMPORTANT TO TRY
AND UNDERSTAND AS WELL.
AN FINALLY I THINK WE NEED MORE
STUDIES ON THESE KINDS OF
INTERVENTION DESIGNS THAT CAN
PERSONALIZE INTERVENTIONS SO IF
WE KNOW A CHILD NOT RESPONDING,
HOW LONG DO WE WAIT, AT WHAT
DOSE SHOULD WE PROVIDE THE
INTERVENTION AND WHAT SHOULD WE
SHIFT TO IF THE INTERVENTION NOT
DOING WHAT IT NEEDS TO BE DOING
TO HELP A CHILD TO SPEAK?
AND ALSO TO COMMUNICATE.
I WANT TO GIVE APPRECIATION TO
THE FUNDING FOR THIS KIND OF
RESEARCH AND IN THE RESEARCH
THAT WE HAVE CONTINUED THAT WERE
IN THE MIDST OF DOING WITH THIS
POPULATION OF INDIVIDUALS.
SO AUTISM SPEAKS PRIMARILY
FUNDED THIS PAST STUDY NIDCD AND
NICHD AND THE THERAPISTS AND
FAMILIES AND EVERYONE WHO
PARTICIPATED.
SO THANK YOU.
>> THANK YOU VERY MUCH,
DR. KASARI.
WE'LL HAVE QUESTIONS FOR BOTH
DR. KASARI AND DR. TAGER FLUS
BURG DURING THE IN THE
DISCUSSION AT THE END.
I'LL MOVE ALONG TO THE NEXT
PRESENTER, DR. JANICE LIGHT.
DR. LIGHT IS THE HINTZ FAMILY
ENDOWED CHAIR IN CHILDREN'S
COMMUNICATIVE COMPETENCE AND
DISORDERS AT PENN STATE
UNIVERSITY.
HER PRESENTATION IS AUGMENTATIVE
AND ALTERNATIVE SUPPORTS FOR
INDIVIDUALS WITH AUTISM.
DR. LIGHT, WELCOME.
>> THANK YOU SO MUCH.
IF IT'S AN OKAY I'LL SHARE MY
SCREEN.
FIRST AND FOREMOST THANK YOU FOR
THE OPPORTUNITY TO TALK WITH YOU
TODAY.
I'M THRILLED TO HEAR THAT THE
IACC IS INTERESTED IN THE AREA
OF AUGMENTATIVE AND ALTERNATIVE
COMMUNICATION.
I WANTED TO START BY THANKING
THE MANY CHILDREN AND ADULTS
WITH COMPLEX COMMUNICATION NEEDS
AND THEIR FAMILIES WHO HAVE
ALLOWED ME TO BE PART OF THEIR
LIVES.
I'VE LEARNED A TREMENDOUS AMOUNT
AND HOPE TO SHARE LESSONS I'VE
LEARNED WITH YOU TODAY.
THERE ARE MORE THAN 5 MILLION
AMERICANS, MORE THAN 97
INDIVIDUALS WORLDWIDE THAT HAVE
MINIMAL OR NO SPEECH AND ARE NOT
ABLE TO RELY ON THEIR SPEECH TO
MEET ALL OF THEIR COMMUNICATION
NEEDS.
AND THIS IS AN INCREDIBLY
DIVERSE GROUP.
IT CUTS ACROSS THE LIFE SPAN AND
IT INCLUDES INDIVIDUALS WHO HAVE
A WIDE RANGE OF NEEDS AND SKILLS
INCLUDING THOSE THAT HAVE BEEN
FACED COMMUNICATION CHALLENGES
SINCE BIRTH AND INCLUDES
INDIVIDUALS WITH ACQUIRED
DISABILITY OR CONDITIONS SUCH AS
THOSE FROM TRAUMATIC BRAIN
INJURIES OR STROKE OR ALS OR
ALZHEIMER'S AND THOSE WHO MAY BE
VENTILATOR DEPENDENT DUE TO
COVID AND OF COURSE IT INCLUDES
CHILDREN AND ADULLS ON THE
AUTISM SPECTRUM DISORDER AND
IT'S THESE INDIVIDUALS WE'LL BE
TALKING ABOUT THIS AFTERNOON.
WITHOUT ACCESS TO SPEECH THESE
INDIVIDUALS FACE CHALLENGES IN
EXPRESSING THEIR NEEDS AND
WANTS, INTERACTING SOCIALLY WITH
OTHERS AND SHARING THEIR
EXPERIENCES AND INFORMATION WITH
OTHERS AND RESTRICTED IN THEIR
ASPECTS OF LIFE, INCLUDE
EDUCATION, EMPLOYMENT, HEALTH
CARE, FAMILY LIFE, COMMUNITY
LIVING.
FORTUNATELY OVER THE PAST 30, 40
YEARS THERE'S BEEN ADVANCES IN
AUGMENTATIVE AND ALTERNATIVE
COMMUNICATION BETTER KNOWN AS
AAC.
IT OFFERS THE POTENTIAL TO
AUGMENT SPEECH, ENHANCE
COMMUNICATION BOTH COMPREHENSION
FOR THOSE WHO HAVE DIFFICULTY
UNDERSTANDING SPOKEN LANGUAGE AS
WELL AS EXPRESSION FOR THOSE WHO
HAVE DIFFICULTY USING SPEECH TO
MEET THEIR COMMUNICATION NEEDS.
THERE'S BEEN A SOMEWHAT NARROW
VIEW OF AAC WITHIN THE FIELD OF
AUTISM WITH THE BELIEF INITIALLY
AAC EQUALS THE PICTURE EXCHANGE
COMMUNICATION SYSTEM AND
RECENTLY THE BELIEF AAC EQUALS
PROLOGO TO GO AND IT IS A WIDE
AARRAY -- ARRAY OF TOOLS FOR
UNED AED AAC SUCH AS SIGNS AND
GESTURES, THE USE OF
LOW-NON-ELECTRONIC SYSTEMS SUCH
AS THE VISUAL SCHEDULE AND THE
USE OF A WIDE RANGE OF ASSISTIVE
TECHNOLOGIES THAT INCLUDE VERY
DIFFERENT REPRESENTATIONS
ORGANIZATIONS, TECHNIQUES AND
OUTPUTS OF LANGUAGE.
I HAVE THE HONOR AND PLEASURE TO
SERVE AS THE PRINCIPLE
INVESTIGATOR OF THE
REHABILITATION RESEARCH CENTER
ON AUGMENTATIVE COMMUNICATION
AND FUND THE NATIONAL INSTITUTE
ON INDEPENDENT LIVING AND
REHABILITATION RESEARCH HAS A
MANDATE TO CONDUCT RESEARCH TO
ADVANCE OUR KNOWLEDGE, IMPROVE
SERVICES AND IMPROVE OUTCOMES
FOR THIS POPULATION OF
INDIVIDUALS WHO HAVE COMPLEX
COMMUNICATION NEEDS.
TO CONDUCT DEVELOPMENT TO
IMPROVE AAC TECHNOLOGY
SOLUTIONS, TRAINING TO BUILD
CAPACITY IN THE FIELD AND
DISSEMINATION TO REACH ALL
STAKEHOLDER GROUPS TO INCREASE
AWARENESS AND KNOWLEDGE OUR GOAL
IS TO EXPAND WHAT IS POSSIBLE
FOR INDIVIDUAL WHO HAVE COMPLEX
COMMUNICATION NEEDS AND CANNOT
RELY ON THEIR SPEECH AND TO
ENSURE WHAT WE KNOW IS POSSIBLE
FROM THE RESEARCH.
IN FACT BECOMES WHAT IS PROBABLY
GOING TO OCCUR WITHIN THE LIVES
OF INDIVIDUAL WHO'S HAVE COMPLEX
COMMUNICATION NEEDS.
I'M GOING SHARE WITH YOU TODAY
NOT A SINGLE RESEARCH PROJECT
BUT SNAPSHOTS OF PROJECTS WE'RE
ENGAGED IN AT THE RRAC AT THE OF
AC AND I TRIED TO PROVIDE AN
EXTENSIVE LIST OF REFERENCES AT
THE END TO TRACK DOWN FURTHER
INFORMATION ABOUT ANY OF THEM.
I'M GOING TO FOCUS ON THE
PROJECTS THAT HAVE IMMEDIATE
APPLICATION TO CHILDREN AND
ADULTS WITH COMPLEX
COMMUNICATION NEEDS BUT I ALSO
WANTED TO LET YOU KNOW THAT WE
ARE ENGAGED AN WIDE RANGE OF
RESEARCH TO ADDRESS THE NEEDS OF
THE ENTIRE POPULATION AND THIS
IS JUST A SMALL EXAMPLE IN THE
PHOTO HERE OF SOME OF THE WORK
WE'RE CURRENTLY DOING ON
COMPUTER INTERFACE.
WORK WE'RE DOING ON LEVERAGING
MULTI-MODALITIES INCLUDING BRAIN
SIGNALS AND EMG SIGNALS, EYE
TRACKING, ETCETERA AND THE USE
OF ARTIFICIAL INTELLIGENCE TO
TRY TO DISAMBIGUATE WHAT WOULD
BE NOISY COMMUNICATION SIGNALS
SO INDIVIDUALS CAN EXPRESS IN AN
INDEPENDENT AND SELF-DETERMINED
WAY THEY'RE MESSAGE.
I BELIEVE ALL THE WORK HAS
IMPLICATIONS FOR ALL OF US
BECAUSE IT ALLOWS A SOCIETY MORE
INCLUSIVE AND ACCESSIBLE TO ALL
OF US.
OUR VISION ULTIMATELY TO TO
ENSURE ALL INDIVIDUALS INCLUDING
THOSE WITH THE MOST COMPLEX
NEEDS HAVE ACCESS TO EFFECTIVE
AAC TECHNOLOGIES AND
INTERVENTIONS TO ALLOW THEM TO
REALIZE WHAT IS A BASIC HUMAN
NEED, A BASIC HUMAN RIGHT AND A
BASIC HUMAN POWER OF
COMMUNICATION.
WHAT DO AWAY KNOW ABOUT AAC
INDIVIDUALS FOR AUTISM?
THERE'S A SOLID AND RAPIDLY
GROWING BODY OF RESEARCH AND
DEMONSTRATES THE FOLLOWING.
FIRST OF ALL, AAC INTERVENTIONS
ENHANCE COMMUNICATION FOR
INDIVIDUALS ON THE AUTISM
SPECTRUM, INCREASE TURN TAKING,
INCREASE REQUESTING, INCREASE
COMMENTING, ETCETERA.
WE ALSO HAVE EVIDENCE AAC
INTERVENTIONS ENHANCE LANGUAGE
DEVELOPMENT, INCREASE THE
ACQUISITION AND USE OF
VOCABULARY, INCREASE THE
COMPLEXITY OF MESSAGES THAT CAN
BE COMMUNICATED TO OTHERS.
WE KNOW AAC INTERVENTION CAN
INCREASE PARTICIPATION IN
SOCIETY, IN EDUCATION, IN
EMPLOYMENT, IN COMMUNITY
ACTIVITIES AND WE KNOW AAC
INTERVENTION CAN DECREASE
SIGNIFICANTLY THE CHALLENGING
BEHAVIORS THAT TOO OFTEN OCCUR
WHEN INDIVIDUALS DO NOT HAVE
WAYS TO COMMUNICATE EFFECTIVELY
WITH OTHERS AND NEED TO RELY ON
CHALLENGING BEHAVIORS TO EXPRESS
THEMSELVES.
AND AS CONNIE JUST ILLUSTRATED
TO US, ALL THESE BENEFITS COME
AT NO RISK TO SPEECH
DEVELOPMENT.
IN FACT, THE RESEARCH
DEMONSTRATES AAC ENHANCES SPEECH
PRODUCTION INCLUDING FOR
CHILDREN AND ADULTS ON THE
AUTISM SPECTRUM.
BUT THESE BENEFITS ARE
PREDICATED ON EQUAL ACCESS TO
AAC INTERVENTION.
A SUFFICIENT INTENSITY TO ATTAIN
MEANINGFUL GAINS AND CONNIE
TALKED TO US ABOUT INDIVIDUALS
HAVING ACCESS TO TWO HOURS OF
INTERVENTION ONE-ON-ONE IN AAC
TO REALIZE THE MEANINGFUL GAINS
WITHIN HER STUDY.
I WANTED TO SHARE WITH YOU
DISTURBING RESULTS FROM A RECENT
STUDY ONE OF OUR DOCTORAL
STUDENTS JUST FINISHED HOT OFF
THE PRESS.
AND THE RESULTS SHOWED 35% OF
WHITE PRESCHOOLERS WERE
RECEIVING LESS THAN 60 MINUTES
OF AAC INTERVENTION PER WEEK AND
THIS WAS NOT LIMITED TO
ONE-ON-ONE INTERVENTION, ANY
TYPE OF AAC INTERVENTION IN THE
WEEK.
AND MOST DISTURBINGLY, 65% OF
BLACK CHILDREN RECEIVED LESS
THAN 60 MINUTES OF AAC
INTERVENTION PER WEEK.
NOWHERE NEAR ENOUGH TO ATTAIN
MEANINGFUL GAINS IN THEIR
COMMUNICATION AND LANGUAGE
SKILLS.
CLEARLY THERE'S AN URGENT NEED
FOR SYSTEM CHANGE TO ADDRESS THE
INEQUITIES AND ENSURE EQUAL
ACCESS TO AAC SERVICES
REGARDLESS OF RACE, ETHNICITY,
FIRST LANGUAGE, ETCETERA.
I'M GOING TO ARGUE WE NEED TO
PROVIDE AAC INTERVENTION AS SOON
AS POSSIBLE.
AAC EXPORTS COMMUNICATION AND
LANGUAGE DEVELOPMENT -- SUPPORTS
COMMUNICATION AND LANGUAGE
DEVELOP.
SO WE NEED TO START BEFORE
CHILDREN WITH AUTISM FALL
FURTHER AND FURTHER BEHIND THEIR
PEERS.
IN OUR WORK IN OUR LAB WITH A
WIDE VARIETY OF CHILDREN WE'RE
WORKING WITH INDIVIDUALS WELL
UNDER 12 MONTHS OF AGE AND MANY
TO APPROPRIATELY DESIGN
ASSISTIVE TECHNOLOGIES ARE
ACCESSING AND ACQUIRING THEIR
FIRST WORDS AT 10 MONTHS AND 9
MONTHS OF AGE SOME BEFORE THEIR
TYPICAL PEERS ARE LEARNING HOW
TO SPEAK.
HAVING SAID THAT, IT'S NEVER TOO
LATE TO PROVIDE AAC
INTERVENTIONS AND UNFORTUNATELY
MANY ADOLESCENTS AND ADULTS
NEVER RECEIVED ACCESS TO AAC AND
SO EVEN AT THOSE LATER AGES THEY
STILL LACK WAYS TO COMMUNICATE
EFFECTIVELY AND THE RESEARCH IN
OUR LAB WOULD SUGGEST WE CAN
STILL ATTAIN MEANINGFUL CHANGES
BY PROVIDING ACCESS TO
APPROPRIATE AAC.
TOO OFTEN OUR INTERVENTIONS
FOCUS SOLELY ON REQUESTING BUT
AS ONE MOM SAID TO ME, THERE'S
MORE TO LIFE THAN JUST ASKING
FOR COOKIES.
WE NEED TO TARGET INDEPENDENT
COMMUNICATION TO FULFILL A WIDE
RANGE OF NEEDS NOT JUST THE
EXPRESSION OF NEEDS AND WANTS
AND BUILDING MEANINGFUL
RELATIONSHIPS WITH OTHERS.
INFORMATION EXCHANGE COMMENTING
TO ALLOW PEOPLE TO SHARE THEIR
EXPERIENCES.
AND THESE LAST TWO FUNCTIONS ARE
ESPECIALLY IMPORTANT BECAUSE
THESE ARE SOME OF THE CORE
CHALLENGES FACED BY CHILDREN AND
ADULTS WHO ARE ON THE AUTISM
SPECTRUM.
IN ORDER TO ATTAIN THESE GOALS
AND MANY DEVICES ARE NOT
RESEARCH BASED.
THEY'VE BEEN DEVELOPED BY NEURO
TYPICAL ADULT AND OFTEN COMPUTER
PROGRAMMERS OR ENGINEERS OR
CLINICIAN AND REFLECT HOW THE
INDIVIDUALS THINK ABOUT THE
WORLD BUT DO NOT REFLECT THE
WAYS CHILDREN AND ADULTS WITH
COMPLEX COMMUNICATION THINK
ABOUT THE WORLD AND AS A RESULT
THEY MAY BE DIFFICULT TO LEARN
AND MAY NOT BE VERY APPEALING TO
USE.
I'M GOING TO ARGUE AAC
TECHNOLOGIES NEED TO BE
REDESIGNED TO BETTER REFLECT THE
NEEDS AND SKILLS OF THE
INDIVIDUALS THEMSELVES WHO ARE
USING THEM THOSE WITH COMPLEX
COMMUNICATION NEEDS AND NEED TO
BE DESIGNED TO REFLECT THE
SCIENCE, WHAT WE KNOW ABOUT
MOTOR DEVELOPMENT, VISION
DEVELOPMENT, HEARING, COG
ANYTHI
COGNITION AND SO EASY TO USE NO
TIME GOES TO USING THE
TECHNOLOGY.
THERE'S NO INHERENT VALUE IN
BEING ABLE TO OPERATE AN AAC
DEVICE.
IT IS SIMPLY A TOOL TO ALLOW US
TO COMMUNICATE AND INTERACT
SOCIALLY AND THE VALUE COMES
FROM THOSE END GOALS.
THOSE SYSTEM NEED TO BE POWERFUL
TO PROVIDE ACCESS TO
COMMUNICATION AND PARTICIPATION.
FAR OFTEN WE SEE AAC
TECHNOLOGIES ARE PRESCRIBED NOT
BASED ON THE NEEDS AND SKILLS
AND PREFERENCES OF THOSE
INDIVIDUALS WHO WILL BE USING
THEM BUT RATHER BASED ON
CLINICIAN FAMILIARITY OR OF
FAMILIES.
ONE SIZE DOES NOT FIT ALL AND WE
NEED TO DEVELOP A GREATER RANGE
OF AAC TECHNOLOGIES THAT CAN BE
PERSONALIZED TO MEET THE
INDIVIDUAL'S NEEDS, SKILLS AND
PREFERENCES INCLUDING THE VOE
VOCABULARY WE PROVIDE AND THE
REPRESENTATION OF THAT
VOCABULARY AND THE ORGANIZATION
AND LAYOUT AND SELECTION AND
OUTPUT.
WE HAVE QUITE A LITTLE BIT OF
RESEARCH IN OUR LAB THAT'S
LOOKING AT THE VISUAL COGNITIVE
DEMANDS OF USING AAC
TECHNOLOGIES AND THE MOTOR
DEMANDS AND THE RESEARCH
CONSISTENTLY DEMONSTRATE EVEN
VERY SMALL CHANGES TO AAC
DISPLAYS CHANGES IN COLOR,
CHANGES IN LAYOUT AND SPACING
AND ORGANIZATION IMPACT THE
ACCURACY WITH WHICH AND THE
EFFICIENCY WITH WHICH
INDIVIDUALS ARE ABLE TO
COMMUNICATE.
WE NEED TO FIGURE OUT WHICH AAC
TECHNOLOGIES WORK BEST FOR WHOM
UNDER WHAT CONDITIONS.
WHAT WE'VE TRADITIONALLY DONE IS
USE PICTURES AND LAY THOSE OUT
WITHIN A GRID OR COLUMNS BUT THE
RESEARCH INDICATES CHILDREN HAVE
DIFFICULTY LEARNING TO USE THE
SYSTEMS.
THEY SEEM TO REQUIRE SOME LEVEL
OF LINGUISTIC SKILLS AND ONE OF
THE REASONS IS BECAUSE THEY TAKE
THE LANGUAGE OUT OF THE CONTEXT
IN WHICH IT IS LEARNED AND USED.
THAT MEANS THEY ARE ESPECIALLY
DIFFICULT FOR BEGINNING
COMMUNICATORS AT THE VERY EARLY
STAGES OF COMMUNICATION WHO ARE
LEARNING FIRST WORDS AND LOOKING
AT ALTERNATIVES WITH VIDEO
DISPLAYS AND THEY'RE SIMPLY
PHOTOGRAPHS OR VIDEOS OF
MEANINGFUL EVENTS WITHIN THE
CHILD'S OR ADULTS LIFE WITHIN
THE BEGINNING COMMUNICATOR'S
LIFE.
HERE WE SNAPPED A PHOTO OF LUCY,
ONE OF HER FAVORITE GAMES
PLAYING TELEPHONE WITH HER
MOTHER AND WHAT WE'LL DO IS
SIMPLY TAKE THIS LIFE EVENT IN
WHICH LUCY IS LEARNING LANGUAGE
AND EMBED THE VOCABULARY
CONCEPTS AS HOT SPOTS WITHIN THE
VISUAL SCENE DISPLAY SO SHE CAN
TOUCH THE PHONE TO RETRIEVE THE
SPEECH OUTPUT TELEPHONE, RING.
OR USE IT AROUND HER MOUTH TO
SAY TALK.
THE VIDEO DISPLAYS OFFER
ADVANTAGES FROM A LINGUISTIC
COMMUNICATORS AT THE FIRST WORD
STAGE.
THEY OFFER SIGNIFICANT
ADVANTAGES VISUALLY.
OUR EYE TRACKING RESEARCH HAS
SHOWN IN FACT THESE TYPES OF
DISPLAYS ARE ATTENDED TO LONGER
AND ATTRACT ATTENTION MORE
QUICKLY THAN GREAT DISPLAYS AND
PROCESSED MORE RAPIDLY BY
INDIVIDUALS ON THE AUTISM
SPECTRUM.
AND INTERESTINGLY ENOUGH THE
DISPLAYS DRIVE VISUAL ATTENTION
TO THE KEY LANGUAGE CONCEPTS IN
THE EVENT, THE PEOPLE, THE
ACTIONS AND THE SHARED ACTIVITY.
IN THIS CASE, THE LITTLE BOY
TREVOR, HIS DOG, BLUE, AND
KISSES FOR WET KISSES.
THESE ARE THE FIRST WORDS OR
LANGUAGE CONCEPT OCCUR IN
LANGUAGE DEVELOPMENT BOTH WITH
CHILDREN NEURO TYPICAL AS WELL
AS THOSE ON THE AUTISM SPECTRUM.
VIDEO VSDs ARE EXCITING BECAUSE
THEY'RE EASY AND QUICK TO
PROGRAM AND THEY SUPPORT JUST IN
TIME PROGRAMMING OF VOCABULARY
IN THE MOMENT AS REQUIRED.
AND THAT MEANS THAT AS I'M
INTERACTING WITH A CHILD AND
THEY SHOW INTEREST IN AN EVENT
OR OBJECT OR ACTIVITY I CAN
QUICKLY AND EASILY CAPTURE THAT
EVENT AND PROVIDE THE CHILD
IMMEDIATELY WITH ACCESS TO THE
NEEDED VOCABULARY.
AND MORE EXCITING IS THE FACT
THAT OUR RESEARCH SHOWS KIDS AS
YOUNG AS 12 MONTHS CAN BE
ACTIVELY ENGAGED IN CAPTURING
THEIR OWN EVENTS AND THEIR OWN
VOCABULARY.
THEY CAN HELP TO TAKE THE
PICTURES OR VIDEOS TO FINDING
THE HOT SPOTS, ETCETERA.
INTRODUCTION OF AAC TECHNOLOGIES
WITH VSDs AND VIDEO VSDs OUR
RESEARCH SHOWS SUPPORT
COMMUNICATION TERMS AND INCREASE
VOCABULARY ACQUISITION AND
EXPRESSION AND GREATER DIVERSITY
OF VOCABULARY EXPRESSED.
VIDEO VSDs ARE EXCITING BECAUSE
THEY'RE EASY FOR PEERS TO
UNDERSTAND AND LEARN AND WE'VE
HAD A SERIES OF RESEARCH STUDIES
LED BY SOME OF THE DOCTORAL
STUDENTS IN OUR LAB THAT LOOKED
AT INVESTIGATING THE IMPACT OF
VSDs AND VIDEO VSDs ON SOCIAL
INTERACTION WITH CHILDREN IN
AUTISM SPECTRUM AND THEIR PEERS
AND STUDIES THAT LOOKED AT
SHARED BOOK ACTIVITIES AND STUDY
THAT'S LOOKED AT INTERACTIONS
AROUND PREFERRED VIDEOS AND
SEVERAL STUDIES THAT HAVE LOOKED
AT PLAY BETWEEN SCHOOL AGE
CHILDREN WITH AUTISM AND THEIR
PEERS.
AND IT'S NOT JUST LIMITED TO
CHILDREN BUT EXTEND TO
ADOLESCENTS AND ADULTS AS WELL.
HERE'S A QUICK OVERVIEW OF A
STUDY RECENTLY COMPLETED BY ONE
OF OUR FORMER DOCTORAL STUDENTS
THAT FOCUSSED ON THE
INTRODUCTION OF VIDEO TECHNOLOGY
TO ADOLESCENTS ON THE AUTISM
SPECTRUM AND THEIR PEERS AND THE
RESULT OF THAT STUDY SHOWED WHEN
WE PROVIDED ACCESS TO THE
TECHNOLOGY AND A VERY BRIEF LESS
THAN 5 MINUTE TRAINING IN HOW TO
USE THE TECHNOLOGY, WE SAW
SIGNIFICANT INCREASES IN SOCIAL
INTERACTION BETWEEN THE
INDIVIDUALS WITH AUTISM AND
THEIR PEERS.
AND WE SAW HIGH LEVELS OF
CONSUMER SATISFACTION BOTH FOR
THOSE ON THE AUTISM SPECTRUM AS
WELL AS FOR THE PEERS.
VIDEO VSD TECHNOLOGY DOES NOT
JUST SUPPORT SOCIAL INTERACTION
BUT ALSO CAN BE LEVERAGED TO
INCREASE PARTICIPATION IN A WIDE
RANGE OF COMMUNITY ACTIVITIES
AND VOCATIONAL ACTIVITIES.
WE HAVE ACCESS TO VIDEO MODELS
FOR STEPS FOR WHAT WOULD BE
COMPLEX COMMUNITY OR VOCATIONAL
TASKS AND THE TECHNOLOGY ALLOWS
US TO EMBED THE COMMUNICATION
SUPPORTS WITHIN THE VIDEO MODEL
TO ALLOW ACCESS TO COMMUNICATION
KEY JUNK TOURS AS REQUIRED
WITHIN THE TASK.
WE HAVE A SERIES OF RESEARCH
STUDIES.
ONES CONDUCTED ON A LARGER SCALE
RESEARCH STUDY NOW AND THEY'VE
SHOWN SUCCESSFUL COMMUNICATION
IN A WIDE RANGE OF COMMUNITY
ACTIVITIES INCLUDING GROCERY
SHOPPING, RIDING PUBLIC TRANSIT
AS WELL VOCATIONAL ACTIVITIES
SUCH AS CHECKING IN BOOKS AT THE
ELEMENTARY SCHOOL LIBRARY OR
WORKING AT THE LOCAL FOOD BANK.
ULTIMATELY OUR GOAL IS
INDEPENDENT GENERATIVE
COMMUNICATION AND WE KNOW HOW
INCREDIBLY IMPORTANT LITERACY IS
TO MEETING THAT GOAL LITERATURE
SKILLS ARE ESSENTIAL FOR ALL OF
US FOR PARTICIPATION IN SOCIETY
AND MORE IMPORTANT FOR
INDIVIDUALS WHO HAVE LIMITED
SPEECH BECAUSE IT'S ONLY THROUGH
LITERACY THEY HAVE ACCESS TO
INDEPENDENT GENERATIVE
COMMUNICATION WITHOUT RELYING ON
OTHERS TO PROVIDE THEM WITH
ACCESS TO PICTURE SYMBOL TO
COMMUNICATE.
IT'S DISTURBING TO SEE MORE THAN
90% OF INDIVIDUALS WITH COMPLEX
COMMUNICATION NEEDS ENTER
ADULTHOOD WITHOUT FUNCTIONAL
LITERACY SKILLS AND THERE'S
AWHILE RANGE OF REASONS FOR THIS
BUT ONE OF THEM IS CURRENT ASC
TECHNOLOGIES DO NOT SUPPORT THE
TRANSITION FROM PICTURE SYMBOLS
TO LITERACY.
SO ARE WORKING AS WELL ON A
SERIES OF WHAT WE REFER TO AS
TRANSITION TO LITERACY FEATURES
THAT WE ARE EMBEDDED INTO AAC
TECHNOLOGY TO SUPPORT
INDIVIDUALS WITH COMPLEX NEEDS
IN MAKING THE TRANSITION FROM
PICTURE-BASED SYSTEMS TO
ORTHOGRAPHY SYMBOL AND WE KNOW
FROM THE PROCESSING LITERATURE
THAT MOTION IS AN INCREDIBLY
POWERFUL ATTRACTER OF VISUAL
ATTENTION.
AND THIS DRAWS THE DEVELOPMENT
OF LITERACY SKILLS.
THE AND THIS SUPPORTS THE
ORTHOGRAP
ORTHOGRAPHICAL FEATURE ON THE
SKILLS OF PARTICIPANTS INCLUDING
THOSE ON THE AUTISM SPECTRUM.
AND THE WORK SHOWS 89% OF
PARTICIPANTS SIMPLY WITH
EXPOSURE TO THE FEATURE
DEMONSTRATED SIGNIFICANT
INCREASES IN THEIR LITERACY
SKILLS AND THOSE CAN BE
INCREASED EVEN FURTHER WHEN
PAIRED WITH APPROPRIATE AND
EFFECTIVE INSTRUCTION AND
LITERACY SKILLS.
I FOCUS PRIMARILY ON ASSISTIVE
TECHNOLOGIES TO SUPPORT
INDIVIDUALS WHO HAVE COMPLEX
COMMUNICATION NEEDS BUT I ALSO
WANTED TO TALK ABOUT THE NEED
FOR TECHNOLOGY SUPPORTS FOR
COMMUNICATION PARTNERS MANY
COMMUNICATION PARTNERS ARE NOT
TRAINED IN AAC OR AUTISM AND
MANY INDIVIDUALS ON THE AUTISM
SPECTRUM WILL TELL YOU THE MOST
SIGNIFICANT CHALLENGES THEY FACE
IN THEIR COMMUNICATION COME FROM
THOSE COMMUNICATION PARTNERS WHO
PREEMPT THEM FROM OPPORTUNITIES
TO COMMUNICATE AND TO
PARTICIPATE.
WE NEED TO BETTER SUPPORT FAMILY
MEMBERS AND OTHER PARTNERS IN
SOCIETY INCLUDING FIRST
RESPONDERS WHO MAY NOT HAVE THE
SKILLS TO INTERACT EFFECTIVELY
WITH INDIVIDUALS WITH MINIMAL
SPEECH.
WE'RE DEVELOPING AN APP TO ALLOW
INDIVIDUALS WITH COMPLEX
COMMUNICATION NICE AND FAMILIES
AND SERVICE PROVIDERS TO QUICKLY
AND EASILY CREATE MOBILE
TRAININGS FOR COMMUNICATION
PARTNERS THAT PROVIDE CHECKLISTS
OF THE STEPS THAT SHOULD BE
FOLLOWED AS WELL AS VIDEO
DEMONSTRATIONS OF THOSE STEPS.
THESE ARE SHORT TRAININGS THAT
CAN BE DEPLOYED JUST IN TIME AS
REQUIRED.
PUSHED TO THE EMT AS THEY'RE
ARRIVING TO PROVIDE SERVICES.
I HOPE I'VE GIVEN YOU A TASTE OF
THE EXCITING ADVANCES IN THE
AREA OF AAC BUT I WANT TO
EMPHASIZE FOR YOU WE BARELY
SCRATCHED THE SURFACE.
WE HAVE TREMENDOUS WORK LEFT TO
BE DONE.
WE DESPERATELY NEED RESEARCH TO
ADVANCE KNOWLEDGE AND DETERMINE
WHICH INTERVENTIONS WORK BEST
FOR WHOM UNDER WHAT CONDITIONS.
WE NEED DEVELOPMENT TO IMPROVE
AAC TECHNOLOGIES SO THAT WE HAVE
A NEW GENERATION OF TOOLS TRULY
RESEARCH BASED AND DRIVEN BY THE
NEEDS AND SKILLS OF END USERS.
WE DESPERATELY NEED TRAINING AND
DISSEMINATION TO BUILD CAPACITY
SO THAT WE CAN CLOSE THE GAP
BETWEEN WHAT WE KNOW IS POSSIBLE
FROM THE RESEARCH AND WHAT IS
ACTUALLY HAPPENING IN THE LIVES
OF MANY INDIVIDUALS ON THE
AUTISM SPECTRUM AND WE NEED
SYSTEM CHANGE TO ENSURE EQUAL
ACCESS TO AAC.
AT THE END OF THE DAY THE
SUCCESS OF OUR AAC TECHNOLOGIES
AND INTERVENTIONS WILL BE BEST
EVALUATED BY THE EXTENT TO WHICH
THEY ENHANCE INDEPENDENT
COMMUNICATION AND PARTICIPATION
BY THE INDIVIDUALS WHO USE THEM.
MEANINGFUL PARTICIPATION IN
VALUED ACTIVITIES OF EVERYDAY
LIFE.
THANK YOU SO MUCH I REALLY
APPRECIATE THE OPPORTUNITY TO
TALK WITH YOU.
>> THANK YOU, DR. LIGHT.
A WONDERFUL CONCLUSION AND
HOPEFUL VISION OF THE FUTURE.
IT'S NOW MY PLEASURE TO
TRANSITION FROM HEARING FROM
SOME OUTSTANDING RESEARCHERS AT
THE CUTTING EDGE OF USING
COMMUNICATIVE SUPPORT FOR
INDIVIDUALS WITH AUTISM AND TURN
TO INDIVIDUAL'S LIVED
EXPERIENCE.
WE'LL BE HEARING FROM TWO SUCH
INDIVIDUALS.
I APOLOGIZE IN ADVANCE WE HAD
THE THIRD SPEAKER RECEIVING A
COMMUNICATIVE INTERVENTION BUT
HAD A LAST-MINUTE SCHEDULING
CONFLICT AND WE'LL HEAR FROM
JORDYN ZIMMERMAN AND WAS
APPOINTED BY PRESIDENT BIDEN TO
THE PANEL ARE THOSE WITH
DIFFICULTIES AND WE'LL HEAR FROM
M
MS. BENITA SHAW BUT FIRST MS.
ZIMMERMAN.
>> HI.
>> THANK YOU FOR INVITING ME
I'LL SHARE MY LIVED EXPERIENCE
AS AN AUTISTIC PERSON AND WILL
INCLUDE POLICY RECOMMENDATIONS
FOR THE IACC TO CONSIDER.
I COMMUNICATE BY TYPING LETTER
BY LETTER ON AN iPAD WHICH
SPEAKS MY WORD ALOUD AND IN DAY
TO DAY INTERACTIONS THERE'S
PAUSES OF SILENCE AS I
COMMUNICATE AND WHILE I AM
EXTREMELY HONORED TO SHARE SOME
OF MY STORY WITH ALL OF YOU, I
WANTED TO POINT OUT IN ESTIMATED
30% TO 40% OF THE MORE THAN 5
MILLION AUTISTIC PEOPLE LIKE
MYSELF IN THE UNITED STATES ALSO
RELY ON COMMUNICATION SUPPORT.
I THINK IT'S A SHAME AND
DISSERVICE I'M THE ONLY PERSON
PRESENTING ON THIS IN A TWO-HOUR
PRESENTATION AND ONLY ONE
NON-SPEAKING AUTISTIC PERSON AND
I CAN ONLY SHARE MY EXPERIENCE
ALONE AND DO NOT AND CAN I CLAIM
TO REPRESENT MORE THAN A MILLION
OTHERS.
MY FIRST IS THAT THE IACC
APPOINT MORE NON-SPEAKING
AUTISTIC MEMBERS TO THE
COMMITTEE AND SOLICIT THE MORE
OF THESE USERS.
I GREW UP IN HUDSON, OHIO
BETWEEN AKRON AND CLEVELAND.
MY PARENTS MOVED TO HUDSON FOR
THE SCHOOLS WHICH ARE CONSIDERED
TOP NOTCH UNLESS YOU'RE A
STUDENT WHO NEEDS SERVICES AND
SUPPORT.
WHEN MY BROTHER STARTED SCHOOL
HE FLOURISHED.
WHEN I BEGAN SCHOOL, MY PARENTS
HAD A STARTLING WAKE UP CALL
ABOUT INEQUITY.
THOUGH THE INDIVIDUALS WITH
DISABILITIES EDUCATION ACT
EXPECTS STUDENT STARTING IN THE
GENERAL EDUCATION CLASSROOM THE
SCHOOL ASSUMED BECAUSE I
COULDN'T COMMUNICATE RELIABLY
WITH SPEECH AND CHALLENGING
BEHAVIORS IT WASN'T THE PLACE
FOR ME.
AS WE KNOW, LEGALLY, I HAD EVERY
RIGHT TO BE THERE.
ACCESS TO RELIABLE COMMUNITY
SHOULD HAVE BEEN BEEN PROVIDED
TO ME BUT NOT BEEN A
PREREQUISI
PREREQUISITE.
AND SOME OF THE REPETITIVE
PHRASES LIKE THE PROCESS OF
PRODUCES WORDS WAS DIFFICULT.
IT WASN'T I WAS LAZY BUT THE
SPEECH WAS A MOTOR MOVEMENT AND
MY BODY HAD TO THINK EXTRA HARD
ABOUT THE PROCESS TO PRODUCE THE
WORDS AND EVEN WHEN ABLE TO
SPEAK THE WORDS I HAD NO WAY TO
SHARE MY ASPIRATIONS FOR THE
FUTURE AND HOW I PLANNED TO
CHANGE THE WORLD AND CHANGES IN
MY LIFE.
WHEN I WENT HOME WITH BRUISES
FROM BEING RESTRAINED MY PARENTS
RELIED ON THE VERSION OF THE
SCHOOL.
I WAS GIVEN ACCESS TO PICTURE
CARDS TO REQUEST ITEMS BUT THAT
NEVER WORKED FOR ME.
AS I PROGRESSED THROUGH SCHOOL
WITHOUT SUPPORT MY EXPERIENCES
BECAME MORE AND MORE TRAUMATIZE.
BY THE TIME I WENT TO HIGH
SCHOOL I WAS SENT TO MULTIPLE
ALTERNATIVE SCHOOLS NONE OF
WHICH COULD SUPPORT ME.
WITHOUT ACCESS TO THE SUPPORT I
NEEDED I COMMUNICATED IN THE
ONLY WAY I COULD, WITH MY BODY
AND WHAT PEOPLE CALLED
CHALLENGING BEHAVIORS.
IN NINTH GRADE I WAS SUSPENDED
AND RESTRAINED WITH HANDCUFFS
AND ANOTHER TIME RESTRAINED BY A
TEACHER AND EXPERIENCED AN ACUTE
BRAIN INJURY AFTER MY TEACHER
HIT MY HEAD AGAINST THE LEDGE OF
A CHALK BOARD HOLDER AND THERE
WERE TIMES I WAS RESTRAINED DUE
TO MY LACK OF ACCESS TO AAC.
NON-SPEAKING AUTISTIC PEOPLE ARE
ONE OF THE LARGEST GROUPS FACING
RESTRAIN AS A RESULT OF NOT
HAVING SUPPORT AND SERVICES WE
NEED.
ONE REASON THE IACC MUST
PRIORITIZE COMMUNICATION SUPPORT
FOR STUDENTS WHO NEED IT AS
EARLY AS POSSIBLE AND RESTRICT
THE USE OF RESTRAINT AND
SECLUSION.
WHEN I RETURNED TO MY FOURTH
YEAR OF HIGH SCHOOL I WAS ONCE
AGAIN PLACED IN A ROOM BY MYSELF
WITH AN INTERVENTION SPECIALIST.
THIS TIME THE TEACHER SPENT TIME
LOOKING FOR HER NEXT JOB IN
FRONT OF ME AND QUIT WITH TWO
DAYS NOTICE.
IT WAS A SHOCK EVERYONE EXCEPT
ME.
THE TEACHER HAD NO STRAINING OR
SUPPORT ON HOW TO MEET MY NEEDS.
MY FOURTH RECOMMENDATION IS THE
IACC PUSH FOR EDUCATORS TO BE
PROVIDED WITH EXTENSIVE TRAINING
ON GETTING COMMUNICATION SUPPORT
AS EARLY AS POSSIBLE.
THIS IS ON EVERYONE.
AFTER STAYING HOME AND NOT
HAVING ACCESS TO INSTRUCTION FOR
NUMEROUS MONTHS THAT SUMMER I
RETURNED TO THE HIGH SCHOOL.
MY CURRICULUM CONSISTS OF BASIC
ACTIVITIES SUCH AS PUTTING
TEACHERS' NAME CARDS IN
ALPHABETICAL ORDER AND WASHING
AND GOING TO STORES TO PUT
CLOTHES ON HANGERS.
I THINK IT WAS THE WAY I MOVED
THAT LED TEACHERS TO ASSUME I
COULDN'T UNDERSTAND ANYTHING
MORE THAN BASIC LANGUAGE.
AT 18 YEARS OLD I WAS BEING
ASKED TO TOUCH MY NOSE AND HEAD
AND GIVEN CANDY FOR COMPLYING.
EVENTUALLY THE DISTRICT DECIDED
IT WANTED TO SEND ME TO A
REHABILITATION PROGRAM.
MY TEACHER AND ONE OF THE HIGH
SCHOOL ASSISTANT PRINCIPALS TOOK
ME TO VISIT WITHOUT FIRST
INFORMING MY MOM.
AT THE SUBSEQUENT MEETING WITH
MY MOM WITH THE OPPORTUNITY THEY
SHARED HOW I HAD ALREADY BEEN
THERE AND LOVED IT.
WHILE I DEEPLY ENJOYED VISITING
THE ANIMALS FOR THE BRIEF 20
MINUTES, NO PART OF ME COULD
ENVISION SPENDING HOURS OF EACH
DAY IN THAT SPACE.
WHEN WE DO NOT HAVE ACCESS TO
EFFECTIVE AND RELIABLE FORMS OF
COMMUNICATION, PEOPLE IN POWER
MAKE DESTRUCTIVE DECISION OUR
LIVES.
THIS IS WHY MY FOURTH
RECOMMENDATION IS SO IMPORTANT.
IN HIGH SCHOOL, I RECEIVED AN
I.Q. SCORE OF 61.
THE ASSUMPTIONS UNDERLYING MY
SCORE HAD A NEGATIVE IMPACT ON
PEOPLE'S PERCEPTIONS OF ME AS
WELL AS MY PERCEPTION OF MYSELF.
PROFESSIONALS TALKED AROUND ME
THINKING I DIDN'T UNDERSTAND
WHILE THERE IS NOTHING SHAMEFUL
ABOUT LOW I.Q. SCORE THEY
ULTIMATELY WERE CONVEYING TO ME
I WAS A FAILURE IN SOCIETY
BECAUSE OF MY POOR MOTOR SKILLS
AND APRAXIA.
MY FIFTH RECOMMENDATION IS THAT
THE IACC PRIORITIZE POLICIES
THAT MAKE SURE I.Q. TESTS ARE
NOT GIVEN FOR PEOPLE WHO DO NOT
HAVE ACCESS TO RELIABLE OR
EFFECTIVE COMMUNICATION.
WE MUST CONSTANTLY REMEMBER
SPEECH IS A MOTOR FUNCTION NOT A
COGNITIVE FUNCTION.
A FEW MONTHS BEFORE MY 19th
BIRTHDAY THERE WAS ANOTHER
RESTRAINED INCIDENT THE DISTRICT
BLAMED ON ME AND TRIED TO EXPEL
ME FOR.
MY MOM GOT IN TOUCH WITH
DISABILITY RIGHTS OHIO.
IT WAS DURING THIS TIME AT HOME
DUE TO THE LAWYERS' INTERVENTION
I BEGAN UTILIZING AN iPAD TO
HELP ME COMMUNICATE.
HAVING MORE RELIABLE
COMMUNICATION ACCESS VIA AN iPAD
DIDN'T IMMEDIATELY DECREASE MY
FRUSTRATION BUT LED TO THE STAFF
DECIDING TO RESTRAIN ME.
IT WAS ONE SUPPORT I NEEDED AND
A SUPPORT THAT WOULD TAKE TIME
FOR KNOW LEARN TO USE.
UNFORTUNATELY, RATHER THAN
SUPPORTING MY USE MY SPECIAL
EDUCATION TEACHER USED MY iPAD
TO BULLY AND MAKE FUN OF ME AND
MADE JOKES ABOUT MY APPEARANCE
AND MY MOM FOUND A SCHOOL
SERVING AUTISTIC STUDENT.
IT WAS NOT RADICALLY INCLUSIVE
AND IT WAS A LONG DRIVE EACH
DAY.
HOWEVER, THEY HELPED ME IN THE
MOMENT.
MY LOCAL PUBLIC HIGH SCHOOL WAS
STEADFAST IN SAYING THEY COULD
NOT SUPPORT MY NEEDS FULL TIME.
AFTER SPENDING A YEAR AT A
SCHOOL I SLOWLY REALIZED MEN
HIGH SCHOOL THOUGH AN HOUR DRIVE
EACH WAY WAS MY BEST CHANCE.
EVEN THE LEADING HUDSON HIGH
SCHOOL WAS IN A WAY MY CHOICE I
FELT ANGER AND DEVASTATION WHEN
I SAW THE SEGREGATION AND IT WAS
ALL I KNEW.
I WASN'T USED TO EATING IN THE
CAFETERIA OR BEING IN CLASSES
WITH 20 OTHER STUDENTS.
FOR THE FIRST COUPLE MONTHS OF
SCHOOL I SCREAMED OFTEN AND
BANGED MY HEAD AND RAN OUT AND I
DON'T THINK MY TEAM GRASPED MY
EXPERIENCE AND I NEEDED PARTNERS
TO SUPPORT ME TO GO TO MY iPAD
WHEN I WAS FEELING A RANGE OF
EMOTIONS.
I TOOK OVER A YEARS OF INTENSE
SUPPORT TO BECOME FLUENT TO BE
EFFECTIVELY UNDERSTOOD BY
OTHERS.
WITH COLLABORATION AND
COMMUNICATION AS THE KEYS I
STARTED TO DEVELOP RELATIONSHIPS
AND I SLOWLY GOT USED TO THE NEW
ENVIRONMENT.
I BEGAN ADJUSTING AND FOR THE
FIRST TIME WAS IMMERSED IN
COMMUNITY LEARNING REAL
ACADEMICS INCLUDING MATH,
ENGLISH, BUSINESS, LAW AND
OTHERS.
AS TIME WENT ON I JOINED
CHEERLEADING AND PARTICIPATED IN
CLUBS AND EVEN JOINED THE SPEECH
AND DEBATE TEAM.
I WAS MEANINGFULLY INCLUDED AND
FELT I BELONGED BUT MY AC SIS
SAYS TO A FREE AND APPROPRIATE
EDUCATION SHOULDN'T HAVE ONLY
BEEN AN HOUR AWAY OR STARTED AT
19.
I GRADUATED HIGH SCHOOL AND
BEGAN MY COLLEGE UNIVERSITY AT
OHIO UNIVERSITY.
I ENJOYED COLLEGE BUT PEOPLE
MADE HARMFUL ASSUMPTIONS.
MY ACTIONS WERE CONSTANTLY
PATHOLOGIZED AND THE UNIVERSITY
PRESUMED I'D BE UNSUCCESSFUL AND
SET HIGH STANDARDS IN ATTEMPT TO
PUSH ME OUT AND A PERSEVERED AND
GRADUATED AND IN AUGUST 2020 I
ENROLLED IN A MASTER'S PROGRAM
AT BOSTON COLLEGE AND I TAUGHT
HIGH SCHOOLERS IN A SEPARATE
ENVIRONMENT WITHIN THE BOSTON
PUBLIC SCHOOLS.
IT WAS CHALLENGING TO BE ON THE
OTHER SIDE TO SEE STUDENTS WHO
COULD BE MEANINGFULLY INCLUDED
IF PROVIDED WITH APPROPRIATE
SERVICE AND SUPPORT BUT STUCK IN
THE SAME SYSTEM I FOUND MYSELF
IN.
IN MANY CASE STUDENTS IN MY
CLASS BETWEEN AGES 13 AND 15
WERE STILL TRYING TO GAIN
MEANINGFUL ACCESS TO EFFECTIVE
AAC.
IN DECEMBER I GRADUATED WITH MY
MASTER'S IN EDUCATION AND HAVE
WORKED AS DIRECTOR OF
PROFESSIONAL DEVELOPMENT HELPING
COMMUNITY LEADERS THINK
CRITICALLY ABOUT DIVERSITY AND
THE HUMAN WORTH OF ALL PEOPLE.
IN THE LAST YEAR I HAVE BEEN
FEATURED IN A DOCUMENTARY CALLED
THIS IS NOT ABOUT ME AND I
CO-CREATED AND WAS FEATURED IN
LISTEN, A SHORT FILM ABOUT
NON-SPEAKING AUTISTIC PEOPLE.
I SERVE ON THE BOARD OF
DIRECTORS OF COMMUNICATION FIRST
AND HAVE KEY NOTED SEVERAL
CONFERENCES.
LAST MONTH I WAS APPOINTED BY
PRESIDENT BIDEN TO THE
PRESIDENT'S COMMITTEE FOR PEOPLE
WITH INTELLECTUAL DISABILITIES.
THIS WOULDN'T BE POSSIBLE IF I
WAS NOT GIVEN ACCESS TO ROBUST
AAC.
MY VOICE STILL IS OFTEN
QUESTIONED OR DISREGARDED BY
PROFESSIONALS.
LAST SUMMER BEFORE A MINOR
PROCEDURE I SHARED I HAD AN
ALLERGY WITH THE ANESTHES
ANESTHESIOLOGIST AND I WAS
IGNORED AND THIS IS WHY ACCESS
TO AAC IS NOT ENOUGH.
ANY SIXTH RECOMMENDATION IS THE
IACC PUSH FOR AND ADVOCATE TO
COMMUNICATE ON THE WAY BEST FOR
OURSELVES.
WE'RE THE EXPERT ON OURSELVES AS
THE IACC WORKS ON
RECOMMENDATIONS, I URGE IT TO
INCLUDE MORE MAUN-SPEAKING
AUTISTIC PEOPLE IN PLANNING
REPRESENTATION.
EDUCATION MATTERS IN MEDICINE
AND FUNDING.
AND AAC USERS SHOULD BE USED FOR
INFLUENCE IN RESEARCH AND THE
IACC HAS A RESPONSIBILITY TO FIX
THAT.
AS PRESIDENT BIDEN PROCLAIMED ON
WORLD AUTISM DAY WE NEED TO
INCORPORATE THE LIVED
EXPERIENCES OF INDIVIDUALS WITH
AUTISM INTO THEIR RESEARCH.
THE IACC MUST DO A BETTER JOB
ENSURING THOSE WHO NEED IT ARE
GIVENING ACCESS, TRAINING AND
SUPPORT TO USE ROBUST AAC THAT
WORKS FOR US AS EARLY AS
POSSIBLE.
WITHOUT IT WE CANNOT FULLY
PARTICIPATE IN OUR COMMUNITIES
OR LEAD LIVES OF DIGNITY AND
RESPECT AS PRESIDENT BIDEN HAS
CALLED FOR.
TOO MANY PEOPLE LIKE ME ARE
WRITTEN OFF AND SUBJECTED TO
LIVE IN OPPRESSION AND
SEGREGATION.
TOO MANY CAREGIVERS GAVE UP TOO
QUICKLY OR ASSUMED WE CANNOT
LEARN TO USE LANGUAGE WHEN WE
FAIL TO USE SPOKEN WORDS OR
PICTURE CARDS IN EXPECTED WAYS.
IN A SYSTEM DESIGNED TO FAIL
INDIVIDUALS LIKE ME I COUNT
MYSELF LUCKY.
HOWEVER, PEOPLE LIKE ME
SHOULDN'T HAVE TO RELY ON LUCK
OR CHANCE TO BE SEEN AS WORTHY
OR TO HAVE ACCESS TO RELIABLE
COMMUNICATION OR INCLUSIVE
EDUCATION.
WHILE MY STORY IS ONE STORY,
THIS IS NOT ABOUT ME.
AS HORRIFYING AS MY LIVED
EXPERIENCE MAY BE I'M A
RELATIVELY PRIVILEGED WHITE
WOMAN AND WHILE MY STORY SHOULD
NOT BE THE STANDARD, IT SHOULD
NOT BE ASSUMED TO BE UNUSUAL.
30% TO 40% OF AUTISTIC FOLKS
NEED AAC BUT ESPECIALLY
AUTISTICS OF COLOR ARE STILL
DENIED ACCESS TO COMMUNICATION
TOOLS AND SUPPORT EFFECTIVE FOR
US.
EVERY DAY PEOPLE LIKE ME ARE
BEING DEPRIVED OF CONTRIBUTING
TO OUR COMMUNITIES AND THEY'RE
BEING DEPRIVED OF KNOWING OUR
HUMANITY.
THE ONLY THING UNIQUE ABOUT MY
SITUATION IS THE RIGHT PEOPLE
HAPPEN TO STEP IN TO PUSH FOR
THE TRAINING AND SUPPORT THAT
WORKED FOR ME.
WE HAVE TO CHANGE THIS.
I ENCOURAGE THE IACC TO LEAD THE
WAY.
THANK YOU.
I'M HAPPY TO TAKE ANY QUESTIONS
YOU MAY HAVE.
>> THANK YOU.
I WANT TO INTRODUCE OUR FINAL
SPEAKER MS. BENITA SHAW.
A PROUD MOTHER OF TWO YOUNG MEN
ONE ON THE AUTISM SPECTRUM AND
WORKS AT THE U.C. DAVIS MIND
INSTITUTE IN THE RESOURCE CENTER
AND A FACILITATOR FOR THE
SUPPORT GROUP AT THE MIND.
MS. SHAW.
>> GOOD AFTERNOON, EVERYONE.
YOU HAVE TO BEAR WITH ME.
MS. ZIMMERMAN, MY HATS OFF TO
YOU I'M TRYING TO COMPOSE MYSELF
BECAUSE CONTINUE TO DO WHAT YOU
DO BECAUSE YOU'RE DOING IT FOR
OTHERS LIKE MY SON AND THANK
YOU.
I'LL PROCEED TO -- EXCUSE MY
SCRATCHY VOICE BECAUSE LISTENING
TO HER I'M IN TEARS AND MAKES ME
REALIZE HOW MUCH HOPE I STILL
HAVE FOR ANY INDIVIDUAL.
AS YOU STATED, I DO WORK AT THE
MIND INSTITUTE AND I'M A SINGLE
MOM OF TWO BOYS.
MY YOUNGEST IS NOW 20 AND HE WAS
DIAGNOSED WITH AUTISM AT 2 1/2
AND NON-SPEAKING, MINIMAL WORDS
AND A LISTEN TO THE RESEARCHERS
TODAY AND MS. ZIMMERMAN AND I
REALIZE THAT BECAUSE OF WHO HE
IS AND WHAT HE LOOKS LIKE, HE
WAS NOT ABLE TO GET THE PROPER
EDUCATION HE NEEDED TO.
HE STARTED OFF WITH A TEXTBOOK
WHEN HE WAS YOUNG BECAUSE OF
INTEGRATION WE HAD GREAT
CHALLENGES BECAUSE OF HIS
BEHAVIOR.
IT TOOK A LOT IN ORDER FOR HIM
TO BE TAUGHT.
WE DID THAT FOR A WHILE AND I
DECIDED WHEN HE FIRST STARTED HE
WAS IN A NON-PUBLIC SCHOOL AND
THOUGHT THE BEST THING TO DO WAS
TO INTEGRATE HIM.
IT'S HARD WHEN PEOPLE GIVE YOU
NEGATIVE FEEDBACK WHEN YOU'RE
TRYING TO PUSH AND INCLUDE YOUR
CHILD FOR APPROPRIATE EDUCATION
ANY AVERAGE MOTHER WOULD WANT.
IN TRANSITIONING HIM TO A PUBLIC
SCHOOL SYSTEM AND WE LEFT THE
NON-PUBLIC SCHOOL SYSTEM IT
WOULDN'T WORK FOR HIM BECAUSE HE
HAD TOO MANY BEHAVIORS AND
CHALLENGES.
THAT INITIALLY STARTED MY
ADVOCACY FOR MY SON,
CHRISTOPHER, TO FIGHT FOR HIM TO
HAVE WHATEVER EVERYONE ELSE HAS.
YET MY ELDER IS QUITE GIFTED AND
THERE WAS NO ISSUE PROVIDING FOR
THE THINGS HE NEEDED IT'S BEEN A
FIGHT FOR THE PAST 15 YEARS TO
ALLOW MY SON TO BE INCLUDED INTO
THE EDUCATIONAL SYSTEM.
HE HAD SPEECH AND OCCUPATIONAL
THERAPY AND MUSICAL THERAPY.
I BELIEVE THE YOUNG MAN IS
BRILLIANT IN HIS OWN RIGHT BUT
BECAUSE EACH TIME WE WERE ALWAYS
DEALING WITH THIS CHALLENGING
BEHAVIOR AND I BELIEVE BECAUSE
OF HIS SIZE AND HIS SKIN
PIGMENTATION IT WAS A STRUGGLE
FOR HIM TO BE EDUCATED THE WAY
HE DESERVED.
SO WE SPENT 15 YEARS OF TRYING
TO GET HIM TO UTILIZE A DEVICE
THAT WOULD HELP HIM GET HIS
NEEDS AND WANTS MET.
HE HAD TO LISTEN PEOPLE AROUND
HIM SPEAK NEGATIVELY ABOUT HIM
INCLUDING HIS TEACHERS,
INCLUDING THE PEOPLE THERE WERE
SUPPOSED TO BE THERE AND AIDE
WHERE'S LE WAS BULLIED.
HE STARTED DOING THINGS NOT JUST
WITH SELF-INJURIOUS BEHAVIORS
BECAUSE HE WAS NOT BEING HEARD.
I WOULD TELL PEOPLE ALL THE TIME
JUST BECAUSE HE CANNOT SPEAK THE
LANGUAGE WE DO DOES NOT MEAN
HE'S NOT COMPETENT IN HIS OWN
RIGHT.
HE UNDERSTANDS WHAT IS BEING
SAID AROUND HIM, TO HIM AND WHAT
IS HAPPENING AND BECAUSE OF THAT
REACTIONS COME OUT OF HIM
BECAUSE OF THAT.
WE SPENT YEARS FIGHTING FOR
THAT.
SOMEONE SPOKE ABOUT LITERACY.
IT'S JUST NOW IN THIS AGE OF 20
BECAUSE OF THE FIGHT WITH THE
SCHOOL DISTRICT AND FIGHTS WHAT
HAVE YOU SO WHERE INCLUDED
ATTORNEYS AND WHAT HAVE YOU TO
FIGHT FOR WHAT HE NEEDED AND
RIGHT FOR HIM OR GETTING HIM TO
THE LITERACY ISSUE.
WE'RE LIKE 15 YEARS BEHIND THE 8
BALL.
WHEN MS. ZIMMERMAN SPOKE AND HAD
THESE SUGGESTIONS TO YOU, I
TRULY HOPE YOU TAKE IT TO HEART
BECAUSE I THINK MY SON COULD BE
ONE OF THOSE PEOPLE THAT COULD
BE HERE TODAY BECAUSE OF THE
LACK OF PEOPLE NOT BELIEVING IN
HIM OR GIVING HIM THAT
OPPORTUNITY, PREJUDGING HIM
BECAUSE OF THE SIZE HE IS,
BECAUSE HE'S QUITE TALL, BECAUSE
OF THE SKIN TONE HE HAS, HE FELT
HE'S NOT CAPABLE OF LEARNING, IT
WASN'T RIGHT.
BECAUSE OF A CAREGIVER AND MOM
AND ADVOCATING, IT'S SOMETHING
YOU SHOULD NEVER HAVE TO
ADVOCATE IS FOR THE EDUCATION
FOR YOUR CHILD.
THE EDUCATIONAL SYSTEM IS NOT
SET UP FOR PEOPLE WHO HAVE
DEVICES OR USE AUGMENTATIVE
COMMUNICATION.
SMART TVs IN THE CLASSROOM TO
WHERE HE FEELS INCLUDED.
ONE THING THAT WAS A CHALLENGE
FOR HIM WAS HE DIDN'T FEEL THERE
WAS ANYONE ELSE AROUND HIM DOING
THE SAME THING AND THE DEVICE
WAS USED FOR OTHER PEOPLE TO GET
SOMETHING OUT OF HIM WHICH
WASN'T RIGHT.
SO FOR ME, I THINK IT IS TO
REALIZE EVERYTHING PEOPLE ARE
TALKING ABOUT, RESEARCH.
THERE'S A MULTITUDE OF OTHER
PEOPLE THAT ARE OLDER THAT TRULY
NEED THE INTERVENTION IN REGARDS
TO RESEARCH WHERE THEY'RE
LOOKING TO CONSIDER THEY NEED TO
BE A PART OF THE COMMUNITY TOO
BECAUSE YOU'LL LEARN OF WHAT
OCCURRED OR DID NOT OCCUR IN
THEM THAT COULD BE HELPFUL GOING
FORWARD.
I KNOW WE'RE SHORT ON TIME AND
MS. ZIMMERMAN SO MUCH OF WHAT I
WANTED TO SAY AND I ILLUMINATE
EVERYTHING SHE SAID AND MY HAT'S
TOTALLY OFF TO YOU SO I'M GOING
TO STOP SPEAKING.
>> THANK YOU VERY MUCH, MS.
SHAW.
I THINK WE ALL SHARE WITH YOU
THE INTENSITY OF THE NEED IN
THIS AREA AND WE APPRECIATE YOU
COMING AND SHARING YOUR OWN
STORY OF YOUR SON AS WELL.
THERE ARE A LOT OF PEOPLE WHO
WANT TO MAKE COMMENTS AND
PERHAPS FROM IACC.
FIRST IS SAM CRANE.
I'LL ASK EACH MAKE COMMENT OR
QUESTION, IF IT'S A QUESTION TO
WHOM IT SHOULD BE ADDRESSED.
>> I WANT TO TALK ABOUT THE NEED
FOR RESEARCH ABOUT HIGH QUALITY
AAC SUPPORTS FOR ADULTS.
A LOT OF RESEARCH -- STILL NOT
ENOUGH RESEARCH BUT WHEN WE LOOK
AT RESEARCH ON AAC SUPPORTS IT'S
LARGELY FOCUSSED ON LANGUAGE
LEARNERS INCLUDING CHILDREN AND
WE HAVE SO LITTLE INFORMATION ON
HOW TO MAKE SURE THE AAC WORKS
FOR ADULTS.
THERE'S CRITICAL PERIODS FOR
LANGUAGE AND PEOPLE LEARN
LANGUAGE DIFFERENTLY IN
ADULTHOOD.
THERE'S NO REASON TO THINK IT'S
NOT TRUE FOR AUTISTIC PEOPLE
THOUGH WE KNOW IT'S TRUE FOR
NON-AUTISTIC PEOPLE.
WE REALLY CRITICALLY NEED THAT
RESEARCH.
THERE'S SO MANY PEOPLE WHO HAVE
NOT BEEN SERVED WHO MISS OUT ON
GETTING THOSE SERVICES AS
CHILDREN AND WE CAN'T LEAVE THEM
BEHIND.
>> THANK YOU VERY MUCH.
>> MS. SHAW, I SEE YOU AS A
MOTHER AND KEEP TAKING DEEP
BREATHS AND KEEP FIGHTING THAT
FIGHT I AGREE MORE RESEARCH IS
NEEDED AROUND AAC AS IT RELATES
PARENT INTERVENTIONS AS
DR. KASARI SHARED.
I HOPE IT WILL HELP BRIDGE GAPS
BETWEEN DISCIPLINES AND SERVICE
SYSTEMS AND CREATE MORE
OPPORTUNITIES FOR INDIVIDUAL
SUPPORTS AND SERVICES.
UNFORTUNATELY, DR. LIGHT I'M NOT
SURPRISED ABOUT THE DISPARITIES
IN ACCESS TO AAC.
IN MY EXPERIENCE SUPPORTING MY
SON I FOUND IT DIFFICULT TO
GENERALIZE AND ADOPT THE USE AT
HOME WITH HIM AS PROVIDERS IN
THE SCHOOL AND WITH COMMUNITY
PROVIDERS WHO WOULD NOT ADOPT
AAC.
I'M NOT GOING TO SAY THEY DIDN'T
TRY BUT THE RESPONSE WAS HE CAN
TALK.
WHY DO WE WANT TO SUPPORT HIS
VERBAL COMMUNICATION?
LOOKING BACK NOW AND LISTENING
TO WHAT YOU ALL SHARED TODAY, I
CAN SEE THE TRAINING IS NEEDED
ACROSS DISCIPLINES TO SUPPORT
THE USE OF AAC AND OBVIOUSLY
CAN'T HAVE ENOUGH RESEARCH.
MOST ARE AGREEING HERE TODAY
ABOUT THAT.
IN ADDITION TO ACCESS TO
COMMUNICATION AND EMPLOYMENT
ETCETERA, NOT BEING ABLE TO
COMMUNICATE BECOMES AN ISSUE OF
SAFETY.
IF YOU CAN'T COMMUNICATE HOW CAN
YOU REPORT IF YOU'RE SICK OR
THERE'S ABUSE, ETCETERA.
AND MS. ZIMMERMAN, THANK YOU FOR
SHARING YOUR EXPERIENCE AND
RECOMMENDATIONS.
COULD YOU SHARE WHICH PROGRAM
YOU USE IN YOUR iPAD TO
COMMUNICATE?
I'M NOT SURE I MISSED THAT.
AND WHAT ADVICE CAN YOU PROVIDE
TO FAMILY MEMBERS TO FIGURE OUT
THE BEST AAC SUPPORT FOR THEIR
LOVED ONES.
THANK YOU.
>> MS. ZIMMERMAN, WOULD YOU LIKE
TO RESPOND?
>> I CURRENTLY USE THE LOW TEX
THE VARIATION FLUCTUATES WHICH
IS WHY MY RECOMMENDATION IS SO
VITAL.
>> THANK YOU FOR THAT RESPONSE.
>> THANK YOU.
>> NEXT WE HAVE A QUESTION FROM
DENA.
>> THANK YOU TO ALL OUR
SPEAKERS.
IT WAS AN EXCELLENT
PRESENTATION.
I JUST WANTED TO SAY TO THE MOMS
JUST KEEP THE GOOD FIGHT UP.
MY SON WAS NOT PROVIDED ACCESS
TO TECHNOLOGY UNTIL HE WAS WELL
INTO COLLEGE AND I DO HAVE
RELATIVE PRIVILEGE AND I HAVE TO
NOT WORK AND TRY TO HELP MY SON
GET THROUGH SCHOOL AND I STILL
WOULD NOT WIN THAT BATTLE SO
HANG IN THERE.
I JUST WANTED TO THANK YOU,
JORDAN CALLEY SAYS HI.
I WANT TO THANK YOU FOR THE
COMMENTS ESPECIALLY AROUND
TRAUMA.
I HOPE WE CAN CONTINUE TO
DISCUSS AND DIALOGUE IN THE
RESEARCH THAT EVEN THOUGH A
PERSON DEVELOPS SOME LANGUAGE
CAPACITIES DOESN'T MEAN WE
SHOULDN'T CONTINUE TO OFFER AAC.
AS YETTA INFERRED I WANT TO GO
INTO GREATER DETAIL ABOUT THAT.
MY SON SPEAKS WITH DIRECTIVES
AND HE AUTHORIZED ME TO DIRECT
THIS AND HIGHLY FLUENT IN HIS
AREAS OF SPECIAL INTERESTS.
HE DOES NOT USE INTEROGTORY
LANGUAGE AND WAS SINGLED OUT AND
TORMENTED BY EDUCATORS AND TO
THIS DAY I STILL DO NOT KNOW
EXACTLY WHAT HAPPENED BECAUSE HE
CANNOT COMMUNICATE ANYTHING
AROUND LANGUAGE WHEN HE'S
EMOTIONAL.
I BELIEVE WE WOULD HAVE THOSE
ANSWERS IF HE HAD NOT BEEN
WITHHELD FROM HAVING ACCESS TO
TECHNOLOGY SO VERY LONG.
SO WHEN WE THINK ABOUT TRAUMA IN
THIS POPULATION THE DENIAL OF
THE ACCESS TO TECHNOLOGY IS
DIRECTLY LINKED TO OUR INABILITY
TO HELP PEOPLE THERAPEUTICALLY
PROCESS TRAUMA.
IF YOU CAN'T WRITE ABOUT IT AND
CAN'T DRAW ABOUT IT OR SPEAK
ABOUT IT, HOW DO YOU UNPACK A
TRAUMATIC EVENT?
I CAN'T EMPHASIZE ENOUGH HOW
IMPORTANT IT IS WE PROVIDE BOTH
OPTIONS EARLY ON.
I'M VERY EXCITED ABOUT
DR. LIGHT'S RESEARCH WITH PRE
VERBAL CHILDREN AND WONDERING IF
THE COMBINATION OF INTERO SE JOOINTEROCEPT IVE
WORK CAN ADD BECAUSE OF LOWER
FRUSTRATION LEVELS.
HAVE YOU SEEING ANYTHING LIKE
THAT, DR. LIGHT?
BETTER COPING SKILLS, BETTER
SELF-REGULATION?
ANYTHING LIKE THAT IN THE KIDS
GIVEN TECHNOLOGY SO MUCH
EARLIER?
>> THERE ARE PEOPLE SUSPECTED OF
HAVING AUTISM AND OTHERS WITH
OTHER DISABILITIES WE'RE
INTERVENING AND INTRODUCING
TECHNOLOGIES AND WE'RE SEEING
INCREASES IN SOCIAL
PARTICIPATION AND TURN TAKING
AND LANGUAGE, FIRST WORDS COMING
EARLIER THAN WE MIGHT TYPICALLY
EXPECT AND MAKING GAINS AND WE
HAVE SEEN LOW LEVELS OF
BEHAVIORAL PROBLEMS BECAUSE THE
ROOT OF MOST OF THOSE AS WE KNOW
IS THE LACK OF ABILITY TO
COMMUNICATE EFFECTIVELY WITH
OTHERS INTERESTINGLY ENOUGH,
MANY KIDS WE HAVE TRACKED HAVE
ALSO ENTERED SCHOOL WITH
LITERACY SCHOOLS AND I WILL SAY
THAT THAT HAS DRAMATICALLY THEN
CHANGED THEIR WHOLE EDUCATIONAL
EXPERIENCE BECAUSE THEY IMPROVED
AND NOW IT'S UP TO THE
EDUCATIONAL SYSTEM TO SUPPORT
THEM AND WE NEED BETTER SUPPORTS
TO SHARE THEIR CAPABILITIES AND
SKILLS WITH OTHERS.
>> THAT'S GLORIOUS.
THANK YOU SO MUCH.
>> THANK YOU.
I BELIEVE STEVE HAS A COMMENT
FROM ONE OF THE MEMBERS WHO
SUBMITTED IT VIA THE CHAT.
>> THERE'S SOME COMMENTS.
THREW FOR THE EXCELLENT
PRESENTATIONS.
I'D LOVE TO SEE --
>> STEVE, I DON'T KNOW IF IT'S
JUST YOU YOUR AUDIO IS ECHOING
OR BROKEN UP.
I'LL GO ON TO THE NEXT PERSON
AND COME BACK TO YOU.
SEE IF YOU CAN FIX THAT.
MARIA FRYER NEXT.
>> THANK YOU SO MUCH.
I APPRECIATE THE SPEAKERS AND
COMMENTS AND A WANTED TO SAY TWO
THINGS.
ONE OF A PERSONAL NATURE AND
THEN MORE SPEAKING TO THE TRAUMA
AND SAFETY ISSUES.
I'M INTERESTED MORE IN THE
SAFETY ASPECTS AND RESPONDING TO
STUDENTS THAT MAY HAVE BEEN
VICTIMIZED.
ON A PERSONAL LEVEL I WANTED TO
SAY AGAIN TO THE MOMS, THE AND
ONE DAY AT THE DINNER TABLE SHE
STARTED SINGING.
IT'S INTERESTING WHEN YOU TALK
ABOUT IMITATION AND I KNOW THAT
I EXPERIENCED THAT FIRST HAND.
I'M HOPE FUL AND OPTIMISTIC IN
THE RESEARCH AND I APPRECIATE
THE PERSONAL STORIES.
ON A PROFESSIONAL LEVEL I'M VERY
INTERESTED IN HOW IN TERMS OF WE
COULD DO BETTER IN TERMS OF
TRAINING OUR SCHOOL RESOURCE
OFFICERS ESPECIALLY THROUGH A
LOT OF OUR GRANT-FUNDED
PROGRAMS.
ONE IN PARTICULAR I'M THINKING
ABOUT IS IS THE STOP PROGRAM.
BASICALLY WE'RE BEGINNING A
WHOLE NEW AREA OF THE PROGRAM IN
TRAININGS WHERE TOWARDS OFFICERS
AND TEACHERS AND EDUCATORS ABOUT
STUDENTS ON THE AUTISM SPECTRUM
AND HOW TO BETTER CONNECT THEM
WITH TREATMENT.
I'D LIKE TO LEARN MORE ABOUT HOW
TO RESPOND TO STUDENTS WHO ARE
NON-VERBAL THAT MAY HAVE TRAUMA
AND MAY NEED TO UNPACK THOSE
ISSUES AND WHAT THEIR EXPERIENCE
WAS AND HOW TO MAKE A REPORT AND
PERHAPS TALK ABOUT THE
VICTIMIZATION AND HOW TO CONNECT
THEM TO APPROPRIATE TREATMENT
AND SERVICES.
I'M VERY INTERESTED IN LEARNING
MORE ABOUT WHAT IS AVAILABLE IN
TERMS OF ACTUAL TRAINING FOR
STAFF AND SCHOOL RESOURCE
OFFICERS.
I'LL STOP THERE.
THANK YOU FOR THE PRESENTATIONS
TODAY.
THEY WERE INCREDIBLY
INFORMATIVE.
THANK YOU.
>> THANK YOU.
WE'LL GO TO MATTHEW -- WE'LL
COME BACK TO STEVE AND SEE IF
HIS AUDIO IS WORKING BETTER.
>> CAN YOU HEAR ME?
>> MUCH BETTER.
>> GO AHEAD.
>> THIS IS A COMMENT FROM HARI.
THANK YOU FOR THE EXCELLENT
PRESENTATIONS.
I WOULD LOVE TO SEE MORE
RESEARCH ON APRAXIA AND SENSORY
SYSTEMS AND BODY SCHEMA.
CURRENT TECHNOLOGY IS NOT ALWAYS
INTUITIVE TO USE AND SOMETIMES
CONFUSING AND SHORT BATTERY LIFE
AND TOO MANY MENUS TO NAVIGATE
AND NOISY, OVER CROWDED SCREENS.
MINE NEVER HAD INDIAN FOOD AND
IT MESSES UP THE WAY IT SAYS MY
NAME AND TECHNOLOGY DIDN'T
FUNCTION AT THE POOL OR SOCCER
THOUGH EDUCATION IS REQUIRED IN
THOSE ENVIRONMENT.
ARE VSDs AVAILABLE TO THE
GENERAL PUBLIC?
THE SECOND PART IS, JORDYN, MANY
OF YOUR EDUCATIONAL BARRIERS AND
MEDICAL BARRIERS LIKE ENDING UP
HOSPITALIZED WAS DÉJÀ VU FOR ME.
THANK YOU FOR A BRILLIANT
PRESENTATION.
AND THANK YOU, BENITA.
WHEN YOU ARE NON-SPEAKING
PARENTS ARE THE BEST ADVOCATES
BECAUSE NO ONE ELSE REALLY CARES
OR BOTHERS TO CARE AND YOU'RE
PUSHED THROUGH AND EXISTED OUT
OF THE SYSTEM AT AGE 22 WITH NO
SUPPORTS OR SKILLS.
AND THEN EVERYONE COMPLAINS WHAT
A BURDEN THIS GROUP IS.
>> THANK YOU.
THERE WAS A QUESTION IN THERE I
DON'T KNOW IF ANYONE CAN ANSWER
WITH THE AVAILABILITY OF THE
TOOLS FOR THE GENERAL PUBLIC.
I KNOW MANY ARE INCLUDED IN
TECHNOLOGIES BUT WONDERING IF
THERE'S SPECIFIC ANSWERS TO THE
QUESTION.
>> I CAN TAKE THAT ON.
THEY HAVE AVAILABLE FROM A
VARIETY OF ASSISTIVE TECHNOLOGY
DEVELOPERS AND IF YOU WANT TO
FIRE ME AN E-MAIL AFTERWARDS I
CAN SEND MORE SPECIFICS ABOUT
IT.
I WANTED TO EMPHASIZE I
APPRECIATED YOUR COMMENTS ABOUT
THE LIMITATIONS OF MANY OF OUR
CURRENT APPS AND TECHNOLOGIES
BECAUSE I BELIEVE WE HAVE NOT BY
ANY MEANS EXPLOITED THE FULL
CAPABILITIES OF TECHNOLOGIES
GENERALLY AND NEED TO THINK
THROUGH THE CHALLENGES AND
PROBLEMS YOU'VE TALKED ABOUT AND
FIGURE OUT HOW TO DESIGN MORE
EFFECTIVE SUPPORTS THAT MEET THE
NEEDS OF THE PEOPLE USING THEM
AS OPPOSED TO JUST APPLYING THE
TECHNOLOGIES THAT WE HAVE AND
FORCING PEOPLE TO LEARN HOW TO
USE THEM INSTEAD.
>> WE'RE RUNNING A LITTLE BIT
LATE BUT THERE'S SUCH A DESIRE
FOR DISCUSSION ON THIS POINT
WE'LL EXTEND THIS AND CURTAIL
OTHER PARTS OF THE PROGRAM.
>> I'M A MEMBER OF THE
COMMITTEE.
I HAVE A COMMENT AND A QUESTION.
THE QUESTION IS FOR DR. COOPER.
SO THANK YOU SO MUCH THIS WAS AN
EXTRAORDINARY PANEL AND
PRESENTATION FROM THE
RESEARCHERS WHO SPOKE AND
DR. COOPER TO THE PEOPLE WITH
LIVED EXPERIENCE.
IT'S ONE OF THE BEST
PRESENTATIONS ON COMMUNICATION
AUTISM I THINK OF RECENT MEMORY.
SO FURTHER COMMENT IS THERE'S
BEEN A LOT OF DISCUSSION ABOUT
HOW TO MOVE THINGS INTO PRACTICE
AND SOMEONE SAID IT MORE
ELOQUENTLY THAN THAT IN THEIR
PRESENTATION.
AND THAT IS THE CHALLENGE IN
MANY AREAS.
AND LOOKING AT INTERVENTIONS IN
AUTISM AS WELL AS ACROSS THE
REST OF MEDICINE, THE COIN OF
THE REALM IS RANDOMIZED CONTROL
TRIALS.
WHEN YOU HAVE LARGE RANDOMIZED
CONTROL TRIALS, THAT'S WHAT'S
GETS THINGS PAID FOR AND
DISSEMINATED AND CLINICIANS TO
USE THEM.
IN AUTISM WE HAVE DOZENS OF
STUDIES OF MEDICATION USING
RANDOMIZED CONTROL TRIALS AND WE
LOOK AT PSYCHOSOCIAL
INTERVENTIONS SUCH AS COGNITIVE
BEHAVIORAL THERAPY, ETCETERA,
FOR DIFFERENT THINGS IN AUTISM
AND IN COMMUNICATION
INTERVENTIONS WE HAVE
EXCEEDINGLY FEW LARGE RANDOMIZED
CONTROL TRIALS IN A COCHRAN
REVIEW FROM 2018 IT IDENTIFIED
TWO.
AND PERHAPS THERE'S BEEN A
LITTLE MORE SINCE THEN.
THIS IS AN AREA THAT WE HAVE A
FAIR NUMBER OF SMALL AND
SOMETIMES NOT RANDOMIZED TRIALS
AND HAVE EXCELLENT WORK BEING
DONE AND IN ORDER TO GAIN ACCESS
AND MEET THE NEEDS WE HEARD
ABOUT, WE NEED LARGE RANDOMIZED
CONTROL TRIALS OR OTHER LARGE
WAYS TO GENERATE EVIDENCE FOR
THIS AREA.
MY QUESTION IS TO DR. COOPER,
HOW CAN WE MOVE IN THAT
DIRECTION TO GET THE KIND OF
SUPPORT NEEDED FOR FUNDING AND
GREATER DISSEMINATION FOR THE
CRITICAL INTERVENTIONS?
>> WE'VE BEEN ENCOURAGING SOME
AREAS NEED ED IF THERE WERE A
GROUP OUT THERE THAT'S LISTENING
TO THIS MEETING AND HAS THE IDEA
THEN I SAY COME ON IN AND WE
HAVE COMMENTS WE HEARD TODAY TO
MOVE THIS AREA ALONG A LITTLE
BIT.
THANK YOU VERY MUCH FOR THE
COMMENT.
>> THANK YOU, I DON'T KNOW IF
ANY OF THE INVESTIGATORS CARE TO
RESPOND TO THE COMMENT BEFORE WE
MOVE ON.
I HAVE A COMMENT.
>> A LOT OF THE MOTHERS OF
AUTISTIC INDIVIDUALS DESCRIBED
HOW TRAUMATIZING THE SCHOOL
EXPERIENCE AND NOT JUST NIH BUT
DEPARTMENT OF EDUCATION AND
GETTING EVERYONE AROUND THE
TABLE TO TAKE ON THE CHALLENGES
OF INCLUSION AND THAT'S HOW WE
GET IT INTO SCHOOL SYSTEMS WHERE
THE MAJORITY OF CHILDREN ARE
EDUCATED.
>> DR. KASARI YOU'RE POINTING
OUT THE FACT THAT THE CURRENCY
OF HEALTH CARE SYSTEMS AND THOSE
SYSTEMS ARE THE RANDOMIZED
CONTROL TRIALS AND LOTS OF
INTERVENTIONS AND RANDOMIZED
CONTROL TRIALS AND IT'S NOT
NECESSARILY ENOUGH FOR A SCHOOL
SYSTEM TO ADOPT AN OTHERWISE
EFFICACIOUS PROGRAM.
I THINK YOU'RE POINTING OUT IT'S
NOT ONLY THAT PART.
MOVING ON TO ANOTHER COMMITTEE
MEMBER, SCOTT.
>> THANKS TO THE PRESENTERS.
IT WAS EXCELLENT PRESENTATIONS
AND THIS FOCUS IS A TIME COMING
AND I'D LIKE TO ADD THAT NOT
ONLY FOR RESEARCH BUT FOR OUR
FEDERAL POLICIES, INITIATIVES WE
SHOULD HAVE MORE ON THE FOCUS
FOR EMPLOYMENT, EDUCATION,
HEALTH CARE.
I FEEL LIKE AND THIS APPLIES FOR
RESEARCH THE FOCUS IS SOMETIMES
GENERAL ACCESS TO AAC
COMMUNICATION NOT JUST
OPPORTUNITIES IN SPECIFIC
SETTINGS AND WHAT BEARS FOR AAC
USERS TO ACCESS GAINFUL
EMPLOYMENT AND ACCESS INCLUSIVE
EMPLOYMENT IN K-12 TO HAVE EQUAL
ACCESS TO HEALTH CARE AND
COMMUNITY LIVING AND
COMMUNITY-BASED SERVICE AND
SUPPORT SYSTEMS.
WE NEED TO GROW THE LITERATURE
BASE TO MAKE IT BROADER AND HAVE
FEDERAL POLICIES AND PRACTICES
THAT ALIGN AND EMPHASIZE
COMMUNICATION FIRST AND
EMPOWERMENTS AND HOW THIS
CROSS-CONNECTS TO FOR INSTANCE
OR EMPHASIS IN THE FEDERAL
GOVERNMENT ON DIVERSITY,
INCLUSION AND ACCESSIBILITY AND
EXECUTIVE ORDERS THAT HAVE COME
OUT.
THEY'RE IN ALIGNMENT.
I LOOK FORWARD AND MAYBE
COLLABORATORS AND SISTER
AGENCIES CAN COMBINE HOW TO MAKE
POLICY AND PRACTICE ADJUSTMENTS
TO REDUCED BA BARRIERS TO ACCESS
FOR AAC FOLKS AND MAKE SURE
THERE'S BETTER OPPORTUNITIES AND
WHAT TARGETED FUNDING AND
RESOURCES COULD BE USED TO
ENHANCE THIS FOCUS IN LINE WITH
THE VALUES WE HAVE.
I WOULD SAY UNDER THE AUTISM
CARES ACT WHERE FOLKS HAVE WHAT
THEY NEED TO THRIVE IN
ADOLESCENTS AND ADULTS.
THAT SHOULD BE A RECOGNIZED
RIGHT AS QUALITY OF LIFE AND A
MAJOR PRIORITY FOR AUTISTIC
PEOPLE.
I'M GLAD WE'RE DISCUSSING THIS
TODAY.
BY THE WAY, IT'S GOOD TO SEE
YOU.
I'M BIASSED BECAUSE I'M ALUM AT
PENN STATE SO IT'S GREAT TO SEE
PENN STATE TRAILBLAZING WITH THE
AAC RESEARCH AND THE OTHER
PRESENTATIONS HERE ON THE
RESEARCH AND LIVED EXPERIENCE.
THANK YOU.
>> THANK YOU, SCOTT.
WE HAVE THREE MORE PEOPLE
WAITING TO COMMENT.
TWO MORE PEOPLE BUT ONE OF THE
SPEAKERS RAISED HER HAND,
BENITA.
MS. SHAW WOULD YOU WANT TO
RESPOND?
>> I KNOW I LEFT A LOT OUT
BECAUSE I WAS VERY EMOTIONAL,
SORRY, I'M ASKING FOR
FORGIVENESS FOR THAT BUT
CHRISTOPHER HAD DIFFERENT
DEVICES THEY SPOKE ABOUT TODAY.
AND A COUPLE PROGRAMS WERE
PROLOGO 2 AND TOUCH CAT AND I
WILL SAY I THINK A LOT OF THE
CHALLENGES WERE THE CONNECTION
OF PEOPLE HAVING TRAINING FOR
THE TECHNOLOGY.
HAVE YOU THE SPEECH PATHOLOGISTS
AND DURING THE WEEK IT WAS NEVER
COLLABORATIVE NOR CURRICULUM AND
TEACHER AND HAVING THE LACK OF
TRAINING AND INCLUDING THE
TECHNOLOGY I THINK WAS ALSO WAS
A FALL TO THE EDUCATIONAL
SYSTEM.
WHEN I THINK OF THINGS IF I HAD
TO SHARE WHAT WAS MOST NOW THAT
I'M NO LONGER EMOTIONAL, IT'S
IMPORTANT THERE WAS NO
CONNECTION IN REGARDS TO, I
FELT, ADVOCATING FOR MY SON
BECAUSE HE COMMUNICATED WITH A
DEVICE AS FAR AS BOOKS, AS FAR
AS TANGIBLE THINGS AND WE NEED
TO LOOK TO THE EDUCATIONAL
SYSTEM FOR THOSE WHO USE THE
DEVICE AND IT'S IMPORTANT TO
SHARE HE DID HAVE DIFFERENT
DEVICES HE USED AND IS USING
CURRENTLY AND ALSO IN A LITERACY
PROGRAM NOW.
>> THANK YOU FOR SHARING THAT
ADDITIONALLY.
YOU DO NOT HAVE TO APOLOGIZE.
YOU'VE BEEN A REMARKABLE HELP TO
THIS COMMITTEE IN YOUR
CONVERSATION.
NEXT WE HAVE ANOTHER COMMENT
STEVE WILL LEAD FOR US.
I HAVE TWO COMMENTS.
>> ONE FROM DENA.
AAC IS NOT MUCH USE AT TIMES BUT
STILL ACCEPTED TO COMMUNICATE
FLUENTLY.
THIS IS NOT UNDERSTOOD.
DO TYPICAL PEOPLE NOT CHOKE UP
WHEN THEY CRY AND HAVE A HARD
TIME FORMING SENTENCES AND WORDS
DURING THAT?
THE SECOND COMMENT IS FROM SAM,
I'D LIKE TO NOTE THERE'S OFTEN
LIMIT
LIMITED COVERAGE AAC DEVICES AND
THIS IS A POLICY WE NEED TO
ADDRESS.
>> THANK YOU FOR BOTH COMMENTS
AND I'LL RESPOND QUICKLY TO
SAM'S COMMENT IT'S ONE OF THE
REASONS WHY THE SUGGESTION WAS
FOR RANDOMIZED CONTROL TRIALS.
THOSE ARE TYPICALLY THE
OCCURRENCE WITH WHICH INSURANCE
PROVIDERS AND OTHERS INCLUDING
MEDICARE AND MEDICAID AGREED TO
PAY FOR SERVICES.
FOR OUR FINAL COMMENT OR
QUESTION, WE'LL CALL ON THE
SEGMENT WE'LL CALL ON JALYNN
PRINCE.
>> THANK YOU VERY MUCH.
WHEN OUR SON WAS 14 HE CAME TO A
POINT WHERE HIS COMMUNICATION
WAS EXTREMELY CHALLENGING FOR
HIM.
AND PRIOR TO THAT POINT THERE
WERE A COUPLE OF CATCHPHRASES
THE SCHOOL KEPT USING.
HE'S IN A LANGUAGE RICH
ENVIRONMENT.
WHICH REALLY DIDN'T MEAN A WHOLE
LOT TO HIM.
HE COULD HAVE USED SO MUCH MORE
TO GET HIM TO A POINT OF
COMMUNICATION.
THERE WAS A CRISIS THAT HAPPENED
IN HIS LIFE WHEN WE MOVED A
COUPLE BLOCKS AWAY HE COULD
COMMUNICATE ABOUT THOSE ISSUES.
AND HE WENT IN TO A SITUATION
WHERE HE COULD NOT ATTEND SCHOOL
FOR 18 MONTHS AND HAD TO BE
SCHOOLED AT HOME.
IT GOT TO BE SO EXTREME HE WAS
PULLING BASEBALL SIZED BLOCKS OF
HAIR FROM HIS HEAD BECAUSE HE
WAS SO FRUSTRATED ABOUT NOT
BEING ABLE TO EXPRESS THE THINGS
HE NEEDED.
IT WAS THE FIRST TIME HE WAS
REQUIRED TO TAKE MEDICATION TO
MODULATE WHAT HE WANTED TO BE
AND BE WHO HE WANTED TO BE WHICH
SET A WHOLE PATH OF OTHER THINGS
WITH WEIGHT GAIN AND SO FORTH
IT. GOES DOWN A HUGE PATH.
I WONDER MORE ABOUT HOW SPEECH
AND HELPING US WITH OTHER
EDUCATIONAL POSSIBILITIES CAN
ENHANCE THINGS?
WE WANTED TO CONTINUE FOR HIM AT
AGE 33 NOW CONTINUING SPEECH
CLASSES AND IN THE
WASHINGTON-BALTIMORE ONLY TWO
SPEECH PATHOLOGISTS WOULD EVEN
CONSIDER WORKING WITH AN ADULT.
ONE ENDED UP STARTING A FAMILY
AND IS NO LONGER INSTRUCTING AND
THE OTHER DECIDED SHE ONLY
WANTED TO WORK WITH CHILDREN.
SOW THE DEARTH OF POSSIBILITIES
TO CONTINUE LEARNING OR IMPROVE
THE STATE OF LANGUAGE THEY HAVE
IS EXTREMELY LIMITED AND THERE'S
SUCH A NEED FOR SUPPORT FOR
ADULTS BECAUSE IT DOES NOT
EXIST.
>> THANK YOU FOR THAT AND THOUGH
I SAID THAT WAS THE FINAL ONE, I
SEE SAM CRANE TO HAVE THE FINAL
WORD IN THE SEGMENT.
>> WHILE I ALSO SUPPORT THE
NECESSITY OF RANDOMIZED CONTROL
TRIALS, IT'S NOT ALWAYS THE
PREREQUISITE FOR COVERAGE OF
DURABLE MEDICAL EQUIPMENT WHICH
AAC WOULD CLASSIFIED UNDER.
WE RARELY SEE INSURANCE
COMPANIES REQUIRING RANDOMIZED
CONTROL TRIALS OF WHEEL CHAIRS
BEFORE COVERING WHEELCHAIRS FOR
PEOPLE WHO NEED THEM.
IT'S BOTH A POLICY AND
SCIENTIFIC ISSUE.
>> FAIR ENOUGH.
THANK YOU, SAM.
SORRY, I HAVE TO -- I'LL TAKE
ONE MORE, ALICIA.
>> IT'S OKAY.
I JUST WANTED TO POINT OUT WE'RE
TALKING ABOUT INTERVENTIONS HERE
IN STEAD OF DURABLE MEDICAL
EQUIPMENT.
AGAIN WE'RE MIXING TOGETHER
INTERVENTIONS DELIVERED THROUGH
AC RATHER THAN JUST PROVIDING AN
iPAD OR PROVIDING SOMETHING.
THERE'S STILL SOME QUESTION
ABOUT THE ROLE OF INTERVENTIONS
AND INTERVENTIONS AND HOW THAT
OCCURS AND WE JUST HEARD
BEHAVIORAL INTERVENTIONS ARE
NECESSARY FOR THAT.
I WANT TO MAKE SURE THAT WHEN WE
USE THE WORD AAC WE'RE VERY
SPECIFIC ABOUT WHAT WE'RE
TALKING ABOUT.
>> THANK YOU FOR THAT.
I THINK WE CAN ALL APPRECIATE
THE CHALLENGES HERE OF ENSURING
WE HAVE SUFFICIENT EVIDENCE AND
KNOW WE'RE DOING THE RIGHT THING
AND AT THE SAME TIME ADVOCATING
TO MAKE SURE THE PROCEDURES,
DEVICES, THERAPIES NEEDED TO BE
ABLE TO ASSIST INDIVIDUALS TO
MAXIMIZE THEIR COMMUNICATIVE
ABILITIES ARE AVAILABLE.
THANK YOU TO ALL THE SPEAKERS.
A WONDERFUL SERIES OF
PRESENTATIONS BY THE SCIENTISTS.
QUITE EVOKATIIVIVIVIVE -- EEVOKE
THOUGHTS AND MANY HAVE MADE
VALUABLE CONTRIBUTION TO THE
IACC AND CONTINUE TO DO SO AND
WE APPRECIATE THEIR
PARTICIPATION.
AND I'LL POINT OUT AVID
LISTENERS AND SOME TIME
PARTICIPANTS TO THIS GROUP YOU
ALREADY HEARD FROM AND
INSTITUTES WOULD SUPPORT THIS
RESEARCH AND LISTENING BEHIND
THE SCENES YOU MAY NOT BE AWARE
OF ARE PROGRAM STAFF THAT
DEVELOPED THE PROGRAMS AND I
KNOW THAT THESE CONVERSATIONS
WILL INFLUENCE THEM AND YOU ALSO
HEARD THAT MANY OF THE FEDERAL
PARTNERS HERE ARE DEEPLY
INTERESTED IN THESE INPUTS TO
MAKE SURE BARRIERS AND
COLLABORATE ACROSS AGENCIES TO
ENCOURAGE THE DEVELOPMENT AND
USE OF THESE KINDS OF TOOLS
ACROSS THE FEDERAL GOVERNMENT.
THANK YOU VERY MUCH FOR YOUR
PARTICIPATION.
WE HAVE NOW UNFORTUNATELY RAN
RIGHT THROUGH WHAT WAS TO BE A
BRIEF BREAK AND I KNOW IT'S
DIFFICULT TO SIT THROUGH A LONG
MEETING SUCH AS THIS WITHOUT A
BREAK BUT AT THIS POINT I THINK
WHAT WE'LL DO IS GO INTO THE
ROUND ROBIN UPDATES.
WE WERE TO HAVE A BRIEF
CONSIDERATION OF THE SUMMARY
ADVANCES DISCUSSION OR
CONTINUATION FROM YESTERDAY BUT
GIVEN THE ENTHUSIASM AND
INTEREST IN THE PREVIOUS TOPIC I
MADE THE DECISION ON THE FLY TO
POSTPONE THAT SUMMARY OF
ADVANCES DISCUSSION AND
DR. DANIELS AND I WILL TRY TO
ACHANA
CHANGE -- ARRANGE A TIME WE CAN
GET TOGETHER TO PERHAPS IN A
BRIEF EXTRA SESSION BUT IN A
PUBLIC WAY TO DISCUSS THESE.
WE NOW GIVE THE OPPORTUNITY FOR
MEMBERS OF THE IACC TO MAKE
ANNOUNCEMENTS THEY'D LIKE IT
SHARE WITH MEMBERS AND GENERAL
PUBLIC.
WE WANT TO CELEBRATE THE
ACHIEVEMENTS OF IACC MEMBERS AND
ONE WONPOINTED OUT TO ME THIS
MORNING DR. ROBERTSON FROM THE
U.S. DEPARTMENT OF LABOR WAS
RECENTLY AWARDED THE HENRY
BISCARDI ACHIEVEMENT AWARD.
IT'S FOR EXEMPLARY LEADERS WHO
ADVANCE WORK TO EMPOWER
CHILDREN, YOUTH AND ADULTS WITH
DISABILITIES TO PROTECT THEIR
RIGHTS AND EXPAND ACCESS TO
SUPPORTS AND SERVICES.
SCOTT IS ONE OF THE FIRST TWO
AUTISTIC PERSONS TO RECEIVE THIS
INTERNATIONAL AWARD SINCE ITS
INCEPTION IN 2013.
CONGRATULATIONS SCOTT.
YOU'VE BEEN A VALUABLE MEMBER OF
THE IACC AND WE'RE PLEASED
YOU'VE RECEIVED THIS
RECOGNITION.
>> THANK YOU, DR. GORDON, I
APPRECIATE THAT.
>> I'LL TURN IT OVER TO SUSAN TO
MODERATE THE ROUND ROBIN.
I BELIEVE SHE HAS AN
ANNOUNCEMENT FROM A MEMBER WHO
HAD TO LEAVE AND I SEE SEVERAL
MEMBERS RAISING THEIR HANDS TO
MAKE ANNOUNCEMENTS AND SUSAN
WILL CALL ON YOU.
>> THANK YOU TO THE PREVIOUS
PANEL.
WE APPRECIATE THE INPUT AND WHAT
YOU SHARED.
THANK YOU TO THOSE WHO HELPED
ORGANIZE THAT AND WE'LL CONTINUE
WORKING ON THAT TOPIC AND KNOW I
WANT TO SHARE AN ANNOUNCEMENT
FROM THE DEPARTMENT OF
EDUCATION.
LARRY WEXLER HAD IT LOG OFF AND
WANTED IT SHARE.
THERE'S A SUB MINIMUM WAGE TO
COMPETITIVE INTEGRATION
EMPLOYMENT PROJECT HE WANTED TO
SHARE AND SAID MARCH 21 THE
U.S. DEPARTMENT OF EDUCATION
REHAB SERVICES ADMINISTRATION
RELEASED THE NOTICE INVITING
APPLICATIONS FOR SUB MINIMUM
WAGE TO COMPETITIVE EMPLOYMENT
PROJECT AIMED AT INCREASING
ACCESS FOR PEOPLE WITH
DISABILITIES TO JOBS THAT PAY
GOOD WAGES.
THERE'S SEVERAL POINTS GIVEN THE
TIME.
WE'LL ADD THIS ALL TO THE ROUND
ROBIN DOCUMENT BUT AT THE BOTTOM
THERE'LL BE A PRE-APPLICATION
MEETING SPECIFIC TO THE
COMPETITION WEDNESDAY APRIL 20
NEXT WEEK AT 2:00 P.M. EASTERN
TIME TO RESPOND TO QUESTION.
YOU CAN CHECK RSA GRANT INFO FOR
MORE INFORMATION.
WE'LL PUT IT IN THE ROUND ROBIN
DOCUMENT AND IF YOU HAVE
QUESTION E-MAIL ME OR LARRY
WEXLER TO GET THE INFORMATION.
AND THE DEADLINE IS JUNE 21,
2022.
THANK YOU FOR THAT.
WE'LL TAKE A COMMENT FROM
ALLISON MARVIN.
>> I'M FROM THE SOCIAL SECURITY
ADMINISTRATION.
I WANTED TO ASK PEOPLE TO GO TO
THE MEETING MATERIALS TAB AND
THEN THE ROUND ROBIN DOCUMENTS
AND THE FEDERAL AGENCY PUBLIC
MEMBER COMMUNITY UPDATES
DOCUMENT FOR UPDATES BUT THEY
INCLUDE ADDITIONAL INFORMATION
RELATING TO TODAY'S RELEASE OF
THE FIRST EQUITY ACTION PLAN
WHICH I'D MENTIONED EARLIER
ADDING MORE IN-PERSON
APPOINTMENTS AND TO GET MORE GO
TO SSA.gov/CORONA VIRUS AND THE
I-CAT GRANT IS COMING SOON AND
FOR THE FUNDING OPPORTUNITY
APPLICATION PERIOD IS INCLUDED
IN THE DOCUMENT AND UNDER THE
ROUND ROBIN DOCUMENTS IS THE
DOCUMENT THAT CONTAINS SSA'S
RESPONSES TO THE ADDITIONAL
QUESTIONS TO THE PRESENTATION AT
THE LAST IACC MEETING.
THANK YOU SO MUCH.
>> THANK YOU.
NEXT AN UPDATE FROM ALICIA.
>> ASF IS COLLABORATING WITH
FOUNDATIONS AND INDIANA
UNIVERSITY ON NCATS FUNDED
PROJECT.
IT'S A TWO-DAY MEETING ON G.I.
ISSUE AND NEURO DEVELOPMENT
DISORDERS.
IN ADDITION TO THE TWO HALF DAYS
IN JUNE IT WILL BE JUNE 8 AND 9
AND A NUMBER OF PRESENTATIONS
LOOKING AT NOT JUST THE
ASSOCIATION BUT ALSO ABOUT
RECOMMENDATIONS INCLUDING
DIFFERENT OUTCOME MEASURES,
CONTINUING EDUCATION AND
EDUCATION OF PHYSICIANS AND BIO
BANK.
WE'RE ALSO CIRCULATING A SURVEY
WHETHER OR NOT YOU HAVE A RARE
GENETIC DISORDER IS IRRELEVANT
AND CAN FILL OUT THE SURVEY
ABOUT G.I. SYSTEMS.
THE WEBSITE IS WWW.CANDIDGI.COM.
WE ANNOUNCED OUR UNDERGRADUATE
RESEARCH FELLOWSHIPS WHICH CAN
BE FOUND ON OUR NEW WEBSITE AND
WE HAVE VIDEOS FROM THE MARCH 30
DAY OF LEARNING INCLUDING
PRESENTATIONS ON THE PREVALENCE
OF AUTISM MOBILE TECHNOLOGIES
FOR EARLY DETECTION AND
INTERVENTION AND THE IMPORTANCE
OF LEISURE ACTIVITY.
GO TO OUR WEBSITE TO SEE THAT.
>> THANK YOU.
NEXT, STEVEN, DO YOU HAVE
UPDATES TO SHARE ON BEHALF OF A
MEMBER?
>> YES, THANK YOU.
THERE'S AN AUTISM AWARENESS
MONTH APRIL 19 ON THE IMPORTANCE
OF RESEARCH ON PUBERTY AND
AUTISM AND THE DAY IS CALLED THE
INTERSECTION OF AUTISM OF
POVERTY AND RACIAL EQUITY.
AND IN RESPONSE TO THE INTEREST
OF HOUSING RESOURCES IN OUR
RESOURCES SECTION ON THE IACC
WEBSITE WE DO HAVE A NUMBER OF
ITEMS THAT WILL BE LISTED IN THE
ROUND ROBIN DOCUMENT ALONG WITH
THE LINK TO THE PRESENTATIONS.
>> THANK YOU, STEVEN AND I HAVE
A SLIDE ON THE HOUSING RESOURCES
PAGE IN CASE ANYONE IS
INTERESTED.
THANK YOU.
AMANDA.
>> THANK YOU.
IN ADDITION TO THE NO FOs IN THE
ROUND ROBIN REPORT I WANTED TO
LET YOU KNOW THE ADMINISTRATION
FOR COMMUNITY LIVING IS PLEASED
TO ANNOUNCE JILL JACOBS WAS
APPOINTED AS THE COMMISSIONER OF
THE ADMINISTRATION ON
DISABILITIES.
IN ADDITION TO HER PROFESSIONAL
EXPERIENCE OF MORE THAN TWO
DECADES AND VERY QUALIFIED, SHE
ALSO BRINGS EXTENSIVE LIVED
EXPERIENCE BOTH AS A PERSON WITH
A DISABILITY AND AS A MOTHER OF
TWO DISABLED ADULTS.
AS EXECUTIVE DIRECTOR OF
INDEPENDENT CENTER OF NORTHERN
VIRGINIA THE CENTER FOR
INDEPENDENT LIVING, SHE DRAFTED
AND SUCCESSFULLY ADVOCATED NOIR
PASSAGE OF TWO STATE LAWS THAT
EXPLICITLY UPHOLD THE CIVIL
RIGHTS OF PEOPLE WITH
DISABILITIES.
SHE DEVELOPED INNOVATIVE
APPROACHES TO PROVIDING SERVICES
AND SUPPORTS WITH TWO PEOPLE
WITH DISABILITIES DURING THE
COVID PANDEMIC AND SHE'S BEEN A
GRASSROOTS ORGANIZER FOR
DISABILITY ISSUES.
JUST WANTED TO MAKE YOU AWARE OF
THE GREAT NEW ADDITION TO THE
ACL.
>> THANK YOU SO MUCH.
>> SUSAN, I WONDER IF YOU CAN
REMIND EVERYBODY ABOUT THE EVENT
LATER IN THE MONTH.
>> I DO HAVE DETAILS.
I HAVE SLIDES PART OF THE
CLOSING REMARKS.
I DON'T KNOW THERE WERE OTHER
ROUND ROBIN UPDATE?
>> ANY OTHER UPDATES?
>> THIS IS DENA.
I'LL BE PRESENTING AT THE ASHA
CONFERENCE ON A PANEL AND I'M
PRESENT AND IF ANYONE IS ASHA
THEY CAN LOOK FOR ME.
>> THAT'S GREAT.
SUSAN, LET'S MOVE TO THE CLOSING
REMARKS.
>> WOULD YOU LIKE TO START US
OFF WITH REMARKS?
>> I WANT TO THANK EVERYONE FOR
THEIR WORK TODAY AND YESTERDAY.
IT'S BEEN A WONDERFUL MEETING.
WE LEARNED A LOT.
NOT WITHOUT A LITTLE CONTROVERSY
HERE AND THERE BUT WE LEARNED A
LOT AND WE TREATED EACH OTHER
WITH RESPECT.
WE ALSO HEARD FROM THE PUBLIC ON
A RANGE OF ISSUES AND GAVE FOOD
FOR THOUGHT FOR THE STRATEGIC
PLAN AND GAVE MEMBERS AROUND THE
STABLE WHO SUPPORT RESEARCH AND
CARE EFFORTS FOOD FOR THOUGHT
WITH REGARD TO THE VARIOUS
ISSUES DISCUSSED HOUSING AND
COMMUNICATION.
LET ME THANK SUSAN AND HER
ENTIRE TEAM FOR PUTTING TOGETHER
THE MEETING AND FOR ALL THE
INTERVENING WORK.
IT'S A WONDERFUL JOB BY THE IACC
STAFF AND SO I WANT TO THANK AND
RECOGNIZE THAT.
SUSAN.
>> THANK YOU.
>> YES, I'D LIKE TO ECHO WHAT
JOSH SAID.
IT'S BEEN A TERRIFIC MEETING.
WE REALLY APPRECIATE PEOPLE'S
THOUGHTFUL ENGAGEMENT ON ALL THE
ISSUES AND THE WORK WE DID WAS
TOWARDS THE COLLECTIVE VOICE
WHICH IS WHAT THE IACC IS ABOUT.
THANK YOU FOR YOUR EFFORTS AND
WE LOOK FORWARD TO THE NEXT
MEETING.
AS A REMINDER, SOME UPCOMING
ACTION ITEMS FOR THE COMMITTEE
ARE WITH THE SUMMARY OF ADVANCES
JOSH AND I WILL CONFER ON WHAT
WOULD BE THE BEST ROUTE TO TONG
REFINE THE 2021 IACC SUMMARY OF
ADVANCES LIST WHETHER WE WOULD
DO THAT BY E-MAIL OR NEED TO
CONVENE ADDITIONAL MEETINGS TO
COMPLETE THAT BUT WE WANT TO PUT
OUT THE DOCUMENT AS SOON AS
POSSIBLE AND BE KEEPING OUR EYES
OPEN FOR THE 2020 IACC SUMMARY
OF ADVANCE TO COME OUT IN MAY.
AND WE WILL BE ALSO SENDING TO
IACC MEMBERS A SURVEY ON THE
IACC MISSION VALUES AND
POLITICIAN.
AND PROVIDE A WAY TO PROVIDE
ADDITIONAL COMMENTS ON THE REST
OF THE STRATEGIC PLAN AS WE WANT
TO COLLECT ALL THAT INPUT ALONG
THE WAY SO WE CAN GET THE DRAFT
TO WHAT IT NEEDS TO BE.
SO WE WILL WELCOME THAT AND WILL
CERTAINLY SEND YOU MORE E-MAILS
WITH THE DETAILS.
THIS SUMMER WE WILL BE LOOKING
FOR GLOBAL SPEEDBACK ON THE
DRAFT OF THE IACC STRATEGIC PLAN
THAT WE'LL PRESENT TO YOU IN
EARLY JULY AND THE MEETING WE
HAVE SCHEDULED IS FOR JULY 13
AND 14.
IT WILL BE A VIRTUAL MEETING
SIMILAR TO THIS ONE BOTH
AFTERNOONS UNLESS WE DECIDE WE
DON'T NEED BOTH BUT WE'LL WORK
ON THAT AGENDA AND GET IT OUT TO
YOU.
THE NEXT FULL MEETING IS OCTOBER
22 -- 26.
FOR NOW IT'S VIRTUAL OUR HYBRID.
WE'LL LET YOU KNOW AS WE SEE HOW
THINGS PROGRESS.
A REMINDER TO JOIN US FOR THE
NIMHD SPECIAL EVENT IN ANIMATING
THE FUTURE FOR EXCEPTIONAL MINDS
AND THINK IT WILL BE AN
EXCEPTIONAL EVENT AND WE LOOK
FORWARD TO HAVING YOU THERE AND
WILL ALSO RECORD IT.
I'D ALSO LIKE TOE LET PEOPLE
KNOW YOU CAN TUNE IN FOR THE
NSAR ANNUAL MEETING IN SAN
ANTONIO, TEXAS AND WILL BE
AVAILABLE VIRTUALLY MAY 11
THROUGH 14 FOR THOSE WHO WANT
THE LATEST IN AUTISM RESEARCH
AND THERE'S AN AUTISM AT WORK
WORKSHOP MAY 16 THROUGH 18 YOU
MAY BE INTERESTED IN.
WE'VE ALSO PROVIDED THE LINK
THERE.
SO, THANK YOU SO MUCH FOR
EVERYTHING AND THANK YOU FOR THE
OARAC STAFF FOR THEIR WORK AND
THE SUPPORT TEAM THAT HELPED
WITH THE TECHNICAL SUPPORT FOR
THE MEETING.
WE APPRECIATE ALL YOUR EFFORTS.
THANK YOU SO MUCH.
WE LOOK FORWARD TO SEEING YOU
NEXT TIME.