WELCOME TO ALL TO WHAT I KNOW IS
GOING TO BE AN EXCITING AND
INFORMATIVE AND IMPORTANT TWO
DAYS.
I'M JUDITH COOPER, DEPUTY
DIRECTOR OF THE NATIONAL
INSTITUTE ON DEAFNESS AND OTHER
COMMUNICATION DISORDERS, WHICH
IS SPONSORING THIS WEBINAR AND
WORKSHOP.
AND THIS REFLECTS MY INSTITUTE'S
LONGSTANDING EFFORTS TO
ENCOURAGE AND SUPPORT RESEARCH
FOCUSED ON MINIMALLY VERBAL
NON-SPEAKING INDIVIDUALS WITH
AUTISM AS WELL AS RESEARCH
FOCUSED ON AUGUST MENNATIVE AND
ASSISTIVE COMMUNICATION.
FOR A VARIETY OF POPULATIONS.
MANY MAY RECALL A WORKSHOP OVER
10 YEARS AGO FOCUSED ON
NON-VERBAL CHILDREN WITH AUTISM
AND MORE RECENTLY THERE WAS A
PANEL AT THE INTERAGENCY AUTISM
COMMUNICATION -- INTERAGENCY
AUTISM COORDINATING COMMITTEE IN
2022.
WHERE THE TOPIC OF
COMMUNICATION, AUTISM WAS ALSO
FEATURED.
OUR GOAL FOR TODAY AND TOMORROW
IS MORE FOCUSED.
WE WILL ADDRESS NOVEL
INTERVENTIONS, RESEARCH DESIGNS
AND METHODS FOR INTERVENTION
STUDIES AND MEANINGFUL OUTCOME
MEASURES TO FOSTER THE
DEVELOPMENT OF CRITICAL RESEARCH
STUDIES, ADDRESSING THE VARYING
COMMUNICATION NEEDS AND
ABILITIES OF THIS POPULATION.
FIRST, A FEW WORDS OF THANKS.
I'D LIKE TO THANK OUR TWO
CO-CHAIRS, CONNIE KASARI FOR
INPUT IN ALL PHASES OF PLANNING,
AND THANK OUR PLANNING
COMMITTEE, ALL OF WHOM HAVE A
ROLE TODAY OR TOMORROW.
FINALLY, I WANT TO THANK MY MY
ASSISTANT WHO HAS BEEN CRIT COOL
AND WILL CONTINUE TO BE SO OVER
THE NEXT TWO DAYS IN MAKING THIS
ALL RUN SMOOTHLY.
OUR PRESENTERS AND DISCUSSANTS
REPRESENT A WIDE RANGE OF
BACKGROUNDS AND PERSPECTIVES.
TODAY AND TOMORROW, WE'LL HEAR
FROM INDIVIDUALS ON THE AUTISM
SPECTRUM, ALSO FROM THOSE WHO
ARE MINIMALLY EVENTUAL,
NON-SPEAKING.
WITH A RANGE OF COMMUNICATION
SKILLS AND LIVED EXPERIENCES.
AND FROM PARENTS OF NON-SPEAKING
AUTISTIC INDIVIDUALS FROM
RESEARCHERS, CLINICIANS AND
EDUCATORS WITH MANY YEARS OF
EXPERIENCE WORKING WITH AUTISM.
IN ADDITION, WE'RE GOING TO HAVE
SOME PRESENTATIONS ABOUT
INTERVENTIONS AND FINDINGS FROM
NON-AUTISTIC BUT NON-SPEAKING
POPULATIONS, INCLUDING THOSE
WITH CO-OCCURRING COGNITIVE
DISABILITIES.
SO WE MIGHT LEARN FROM AND
INFORM OUR APPROACHES IN AUTISM.
I WANT TO STATE VERY STRONGLY
THE FOCUS OF THIS WORKSHOP IS
LOOKING FORWARD.
WE ASK THAT PANELISTS, THOSE WHO
COMMENT AND AUDIENCE MEMBERS USE
THE LIMITED TIME WE HAVE TO
FOCUS ON THE FUTURE RATHER THAN
RETURNING TO ANY PAST DEBATES.
EVERYONE INVOLVED IN THIS
WORKSHOP AGREES THAT PROVIDING
ACCESS TO EFFECTIVE
COMMUNICATION IS ESSENTIAL.
PLEASE REALIZE THAT THE NIH
REQUIRES ITS MEETINGS TO OCCUR
IN A SAFE, CIVIL ENVIRONMENT.
GIVEN THE DIVERSITY OF
PERSPECTIVES THAT MAY BE PLACED
THIS WEBINAR, I REMIND EVERYONE
THAT YOUR REMARKS AND COMMENTS
AND SLIDES MUST BE RESPECTFUL OF
ALL MEMBERS OF THIS VERY BROAD
COMMUNITY.
AUTISTIC PEOPLE, THEIR FAMILIES,
CLINICIANS AND RESEARCHERS.
I AM PERSONALLY APPALLED AND
SOMEWHAT SADDENED ABOUT SOME OF
WHAT IS APPEARING IN THE SOCIAL
MEDIA RELATED TO OUR WEBINAR.
AND THIS SORT OF ATTACK BEHAVIOR
WILL NOT BE TOLERATED HERE.
REMEMBER THAT PARTICIPANTS IN
OUR WORKSHOP HAVE VOLUNTEERED
THEIR TIME AND THEIR PERSONAL
AND PROFESSIONAL EXPERTISE TO
CONTRIBUTE TO THIS REALLY
IMPORTANT TOPIC.
YOU CAN LISTEN AND MAY NOT AGREE
WITH A PERSPECTIVE THAT IS BEING
SHARED, BUT WE ASK THAT IN LIEU
OF CRITICISM, THAT YOU OFFER UP
WHAT MIGHT BE THE NEXT CRITICAL
STEPS IN OUR RESEARCH AS WE MOVE
FORWARD.
WE RECOGNIZE THAT NIH SUPPORTS
AND RESEARCHERS CERTAINLY VALUE,
STUDIES THAT ARE DATA-DRIVEN,
AND SCIENCE-BASED.
FOR OTHERS, LIFE EXPERIENCE
PROVIDES A DIFFERENT
PERSPECTIVE.
OUR FOCUS OVER THE NEXT TWO DAYS
AS ONE PARTICIPANT SAID TO ME,
MAY BE A LITTLE BIT POLITICALLY
FRAUGHT, SCIENTIFICALLY AND
COMPLETELY EXSPORED AND OFTEN
EMOTIONAL.
LIKELY, WE WON'T AGREE ON SOME
OR PERHAPS MUCH OF WHAT WE MAY
HEAR TODAY OR TOMORROW.
BUT I TRUST, I HOPE, I AM
CERTAIN WE ALL AGREE ON THREE
THINGS.
WE AGREE WE WILL BE RESPECTFUL.
WE WILL LISTEN.
WE WILL ACKNOWLEDGE DIFFERING
VIEWS AND WE WILL OFFER A
VARIETY OF OPINIONS AND RESEARCH
FINDINGS IN A
NON-CONFRONTATIONAL WAY.
TWO, WE AGREE THAT ONE GROUP
CANNOT SPEAK FOR THE ENTIRE
COMMUNITY, WHICH CONSISTS OF
MANY DIVERSE STAKEHOLDERS.
IF I MAY QUOTE FROM ONE OF OUR
PARTICIPANTS, JOHN ROBISON,
THERE IS NO MONOLITHIC COMMUNITY
AT ALL.
RATHER, THERE ARE MANY DIFFERENT
GROUPS, EACH WITH DIFFERENT
IDEAS AND AGENDAS ABOUT AUTISM
AND HOW PEOPLE SHOULD BE
DESCRIBED AND TREATED.
WE AGREE THAT DESPITE THIS
BREADTH OF PERSPECTIVE, WE DO
SHARE THE SAME GOALS.
HOW TO BEST ADVANCE THE
COMMUNICATION JOURNEY FOR
INDIVIDUALS ON THE SPECTRUM.
WHAT RESEARCH QUESTIONS ARE MOST
LIKELY TO CONTRIBUTE TO THAT
ADVANCING?
AND WHICH STRATEGIES OR WHICH
INDIVIDUALS AT WHICH AGES ARE
MOST LIKELY TO LEAD TO EFFECTIVE
AND SOMETIMES INDEPENDENT
COMMUNICATION.
A FEW FINAL POINTS.
FOR THE SPEAKERS AND DISCUSSANTS
NOTED ON THE AGENDA, YOU KNOW
YOU'RE TO HOLD YOUR QUESTIONS OR
COMMENTS TO THE DISCUSSION
PERIOD.
FOR THOSE OF YOU ON THE NIH
VIDEOCAST LINK, YOU CAN PROVIDE
QUESTIONS, COMMENTS AND FEEDBACK
VIA THE FEEDBACK FORM NOTED ON
THE LINK.
WE'LL DO OUR BEST TO ADDRESS AS
MANY OF THESE QUESTIONS AS TIME
PERMITS.
SECOND POINT, WHEN SOMEONE IS
CONTRIBUTING USING AUGUST
MENNATIVE AND ALTERNATIVE
COMMUNICATION, BE PATIENT.
RESPECTING THE ADDITIONAL TIME
THAT IS NEEDED TO FORMULATE
THEIR MESSAGE.
AND DO NOT SPEAK OVER THEM.
PLEASE MUTE AND KEEP YOUR CAMERA
OFF WHEN I TELL YOU TO.
AND DURING THE DISCUSSION
PERIOD, WE'LL ASK YOU TO TURN IT
BACK ON.
ON THIS SLIDE, IF YOU NEED THE
CURRENT AGENDA, I THINK ALMOST
EVERYBODY CERTAINLY HAS IT, BUT
THERE WERE SOME CHANGES JUST
RECENTLY.
OR IF YOU NEED TECHNICAL HELP,
THIS IS HOW TO CONTACT TANJI OR
CHRIS BY E-MAIL OR PHONE NUMBER.
THANK YOU, HELEN.
YOU CAN TAKE IT OFF.
AND THEN, FINALLY, I WANT TO SAY
IN ADVANCE, THANK YOU.
THANK YOU FOR SHARING YOUR
EXPERTISE, YOUR INSIGHTS, YOUR
EXPERIENCES, ALL OF WHICH I KNOW
ARE GOING TO BE INVALUABLE IN
HELPING US TO IDENTIFY KEY
ISSUES IN THE NEXT RESEARCH
STEPS TO ADDRESS THE
COMMUNICATION NEEDS OF THIS
POPULATION.
WE LOOK FORWARD TO HAVING A
GREAT TWO DAYS TOGETHER.
SO, LET'S GET STARTED.
FIRST OF ALL, I'M GOING TO ASK
EVERYBODY TO TURN YOUR CAMERAS
OFF.
PROBABLY PUT YOUR MICS -- MUTE
YOURSELF.
OKAY.
SO WE DECIDED THAT A FIRST STEP
FOR TODAY WOULD BE TO HEAR A
VARIETY OF PERSPECTIVES ABOUT
THE FOCUS OF THE WEBINAR.
SO, WE INVITED A NUMBER OF
STAKEHOLDERS TO HAVE A
ROUNDTABLE ABOUT CHALLENGES AND
OPPORTUNITIES.
AND WE ASKED EACH ONE OF THEM TO
BRIEFLY ADDRESS THIS QUESTION:
WHAT SINGLE RESEARCH QUESTION ON
INTERVENTION TO IMPROVE LANGUAGE
OUTCOMES FOR MINIMALLY EVENTUAL
AND NON-SPEAKING INDIVIDUALS
WITH AUTISM, WOULD YOU LIKE TO
SEE ADDRESSED AND ANSWERED?
SO WE'RE GOING TO BEGIN WITH
COMMENTS FROM GRANT BLASCO, A
COLLEGE STUDENT AND A
SELF-ADVOCATE AND A USER OF AAC
TECHNOLOGY TO GET US STARTED.
>> WAIT.
SORRY.
I DON'T KNOW HOW TO STOP THIS.
OKAY.
>> EVERYONE REALIZES THAT THE
THREE OF US ARE NOT TECHNOLOGY
EXPERTS.
SO BE PATIENT WHEN WE PRESS THE
WRONG BUTTON.
>> AND GRANT, I'M SORRY, BUT
YOURS DID NOT DOWNLOAD PROPERLY
ON MY COMPUTER.
>> OKAY, I THINK I HAVE IT.
>> DR. COOPER, MAKE SURE YOU
SHARE COMPUTER SOUND WHEN YOU
SHARE, ALSO.
>> OKAY.
HOLD ON.
GIVE ME JUST A MINUTE.
>> JUST TO NOTE THAT GRANT IS
TALKING IN FIRST VOICE AND THEN
WE HAVE OTHER STAKEHOLDERS IN
SECOND VOICE, THIS MORNING.
DO YOU HAVE IT?
>> ALMOST.
SORRY.
I DID NOT HAVE IT QUEUED UP.
YOU'RE GOING TO SHOW ME HOW TO
BE SURE WE HAVE SOUND, RIGHT?
OKAY.
JUST CLICK ON THIS LINK HERE?
OKAY.
NOW I NEED TO SHARE SCREEN,
RIGHT?
PLAYING IT FROM HERE IS FINE.
GO BACK TO THE ZOOM -- BUT I
NEED TO KEEP THE LINK UP, RIGHT?
>> YOU ALREADY HAVE IT OPEN IN A
WEB PAGE.
SEE WHERE IT SAYS SHARE SCREEN
ON THE BOTTOM?
SELECT THAT WEB PAGE.
MAKE SURE TO SHARE SOUND.
>> THANK YOU.
>> GOOD AFTERNOON, EVERYONE.
MY NAME IS GRANT BLASCO.
I LIVE IN WASHINGTON STATE,
ATTEND COLLEGE AND SERVE ON THE
ADVISORY COUNCIL OF
COMMUNICATION FIRST, A NATIONAL
CIVIL RIGHTS ORGANIZATION.
I WANT TO THANK THEIR COOPER,
DR. CONNIE KASARI AND DR. HELEN
TAGER-FLUSBERG FOR INVITING ME
TO PRESENT.
I'M HONORED TO BE A PART OF THIS
IMPORTANT EVENT.
AS YOU MAY HAVE NOTICED, I
COMMUNICATE WITH AUGMENTED
ALTERNATIVE COMMUNICATION OR
AAC.
I MAINLY TYPE ON AN iPAD WITH
ONE FINGER WITH WORD PREDICTION
ENABLED AND AT A RATE OF 12
WORDS PER MEANT.
I PREPARE MY RESPONSE IN ADVANCE
FOR TODAY'S TIME CONSTRAINED
REMARKS.
I WAS ONLY 8 YEARS OLD IN 2010
WHEN THE iPAD CAME OUT AND THE
FIRST WORKSHOP OCCURRED.
AT THAT POINT MY COMMUNICATION
WAS STILL SERIOUSLY LIMITED.
RESEARCHERS MIGHT HAVE REFERRED
TO ME AS A NON RESPONDER BECAUSE
DESPITE YEARS OF ACCESS TO
TRADITIONAL INTERVENTIONS, I
STILL COULD NOT SPEAK OR USING
ANY OF THE DEVICES I CHILD.
[ READING ]
I LOOK TO RESEARCH WHEN I HAD
FRUSTRATING PHASES BUT I DID NOT
FIND ANSWERS FOR THIS.
I HAD TO SEEK OUT OTHER USERS ON
MY OWN.
SOMETIMES IT WAS DISHEARTENING
AS THEY HAVE OTHER TYPES OF
DISABILITIES, NOT AUTISM.
MANY SAY THEY DID NOT STRUGGLE
WITH THE SAME CHALLENGE THAT IS
GET IN MY WAY TO GIVE JUST A FEW
EXAMPLES, I AM CONSTANTLY
DISTRACTED BY COMPETING -- AS I
TRY TO COMMUNICATE.
MY EYE TRACKING IS PRONE TO
FATIGUE.
I EXPERIENCE CONTROL ISSUES
REGULARLY THAT ARE EVEN WORSE
WHEN I'M NERVOUS.
AND I HAVE TO FOCUS VERY SLOWLY
AND CAREFULLY TO POINT WITHOUT
MISTAKES.
[ READING ]
>> DR. COOPER: THANK YOU VERY
MUCH FOR THAT, GRANT.
WE ARE READY TO MOVE ON TO --
NEXT WE -- OUR NEXT STAKEHOLDER
PERSPECTIVE COMES FROM MATTHEW
BELMONTE.
I'LL ASK MATTHEW TO TURN HIS
CAMERA ON.
MATHY IS A SIBLING OF A PERSON
ON THE AUTISM SPECTRUM AND A
RESEARCHER.
>> MATTHEW BELMONTE: LET ME TRY
TO ORIENT THIS SO I'M IN THE
RIGHT LIGHT.
THANK YOU VERY MUCH FOR ALLOWING
ME TO PARTICIPATE IN THIS
MEETING.
LET ME GET RIGHT TO IT.
BECAUSE WE DON'T HAVE A LOT OF
TIME.
LET ME SHARE SOME SLIDES.
TWO SLIDES.
I HOPE YOU CAN SEE THAT.
SO THIS IS MY QUESTION.
AND OF COURSE IT IS -- I'M GOING
TO OUT MYSELF AS A PERSON WITH A
POLITICAL -- CAN REPORTS OF
KEYBOARD COMMUNICATION BY PEOPLE
WITH AUTISM GUIDE THE
DEVELOPMENT OF THERAPIES?
HOW?
FOR WHOMAT?
WHAT AGES AND DEVELOPMENTAL
STAGES AND IN WHAT CONTEXTS?
OF COURSE, THE TOPIC WITH A LONG
HISTORY, AND YOU ALL KNOW THE
USUAL SUSPECTS IN TERMS OF THE
METHODS THAT ARE OUT THERE.
FC, RPM AND ALL THESE SIMILAR
METHODS HAVE THIS FUNDAMENTAL
FLAW WHERE THEY CERTAINLY ADMIT
INFLUENCE.
BUT, MANY PEOPLE ARE USING SUCH
A METHOD.
MANY PEOPLE ARE PAYING LOTS OF
MONEY FOR SUCH A METHOD.
BASING DECISIONS ON OUTPUT FROM
SUCH METHODS.
OR POTENTIALLY HAVING OTHER
THERAPIES DISPLACED BY SUCH A
METHOD.
SO I THINK THAT WE NEED TO
LISTEN TO WHAT STAKEHOLDERS ARE
SAYING ABOUT ALL OF THIS.
AND WE NEED TO LISTEN AND
CONSIDER SEVERAL AREAS.
NUMBER 1 THE THEORETICAL AREA,
COULD IT WORK?
IF IT WORKS, HOW MIGHT IT WORK?
MAYBE ASYNCHRONOUS REPETITIVE
MOVEMENT ARE EASIER TO CONTROL.
THE QUESTION OF HETEROGENEITY.
IF IT WORKS, FOR WHOM?
IT CERTAINLY DOESN'T WORK FOR
EVERYONE AND WE HAVE FOUND IN
OUR OWN WORK, ABOUT A THIRD OF
MINIMALLY EVENTUAL -- MINIMALLY
SPEAKING PEOPLE WITH AUTISM IN
OUR CLINICAL SAMPLE, HAVE A
SEVERE ORAL MOTOR IMPAIRMENT.
AND RECEPTIVE LANGUAGE NOT MUCH
GREATER THAN EXPRESSIVE
LANGUAGE.
WE BELIEVE IT IS THIS SUBSAMPLE
THAT MIGHT BE THE CANDIDATES FOR
SOMETHING LIKE THIS.
VARIABILITY.
IN WHAT CIRCUMSTANCES DOES IT
WORK?
A LOT OF PEOPLE TRYING TO RUN
TESTS HAVE TAKEN THE PARTICIPANT
TO THE EXPERIMENT RATHER THAN
TAKING THE EXPERIMENT TO THE
PARTICIPANT'S FAMILIAR
SURROUNDINGS.
WE NEED A WHOLE LOT MORE
PHYSIOLOGICAL MEASURES AND
INPUTS FROM STAKEHOLDERS.
HOW SHOULD IT BE TESTED?
WELL, THE QUESTION OF
RECONCILING THE VERY MANY
POSITIVE CASE REPORTS WITH
NEGATIVE CONTROLLED STUDIES IS A
DIFFICULT ONE.
THOSE STUDIES TENDED TO USE
BINARY TESTS AND MESSAGE
PASSING, WHICH MIGHT NOT BE
SENSITIVE TO SUBTLE ISSUES.
MORE RECENTLY, AND I KNOW YOU
WILL HEAR ABOUT THIS DURING THIS
MEETING, THERE HAVE BEEN EYE
TRACKING STUDIES SHOWING
FIXATION OF LETTERS FOLLOWED BY
EYE GAZE AVERSION.
WE CAN INTRODUCE SENSITIVE
MEASURES LIKE LEXIBLE DISTANCES
AND LOOKING AT PRE FIXES OF
COMMUNICATION.
>> DR. COOPER: MATTHEW, I WILL
HAVE TO ASK TO YOU SPEED IT UP.
THIS SLIDE HAS A LOT OF
IMPORTANT ISSUES THAT WILL BE
AVAILABLE TO THOSE AFTER.
>> MATTHEW BELMONTE: I'M REALLY
SORRY.
LET ME SKIP TO MY LAST POINT.
NUMBER 1, CO-OP ACTIVITY.
MY MAIN POINT IS THE REASON THAT
PEOPLE GO FOR THESE KIND OF
PERSONALITY CALLS AROUND
THERAPIES THAT ARE CLEAN AND
THEY RESIST SCIENTIFIC TESTING
IS BECAUSE THEY FEEL THAT THEY
ARE NOT BEING LISTENED TO BY
SCIENTISTS.
AND THAT IS THE MOST IMPORTANT
TO USE STAKEHOLDER-CENTERED AND
CLIENT-CENTERED METHODS TO
UNDERSTAND WHAT CLIENTS WANT.
TO INVOLVE SKEPTIC SUPPORTERS
AND THE CURIOUS IN EVERYTHING WE
DO IN THE RESEARCH AGENDA.
AND LASTLY, I WANT TO POINT OUT
THAT THE ASSUMPTION OF
COMPETENCE AND VALIDITY CAN IN
SOME CIRCUMSTANCES, BE TOTALLY
HARMLESS.
THERE IS A DIFFERENCE BETWEEN
ASKING WHAT WOULD YOU LIKE FOR
DINNER VERSUS, DID HE TOUCH YOU
THERE?
SO IT'S POSSIBLE TO MAINTAIN
SKEPTICISM IN SOME CIRCUMSTANCES
BUT NOT IN OTHERS.
LASTLY, I WANT TO SAY THAT I'M
GOING TO OUT MYSELF BY -- I DO
HAVE A PERSONAL STEAK IN THIS
AND I HAVE SEEN THE GOOD SIDE
AND THE BAD SIDE OF THE TYPING
METHODS IN OUTPUTS FROM MY
BROTHER.
I HAVE SEEN IT CLEARLY BE
INFLUENCED BY ANOTHER PERSON AND
I HAVE ALSO SEEN IT WITH
REFERENCE TO SHARE CHILDHOOD
MEMORIES BE CLEARLY VALID.
SO IT'S NOT AN EITHER-OR
QUESTION.
IT IS COMPLEX.
THANK YOU.
>> DR. COOPER: THANK YOU,
MATTHEW.
THANK YOU.
IF YOU CAN STOP SHARING AND OUR
NEXT STAKEHOLDER IS ELAINE
LAZAR-WESLEY WHO IS A PARENT OF
AN INDIVIDUAL WHO IS A
NON-SPEAKING AUTISTIC
INDIVIDUAL.
DO YOU WANT TO TURN ON YOUR
CAMERA?
NOW YOU NEED TO UNMUTE AND I
THINK YOU'RE READY TO GO.
>> ELAINE LAZAR-WESLEY: HELLO.
I'M ELAINE LAZAR-WESLEY.
I'M THE MOTHER OF A ALMOST 31
31-YEAR-OLD SON WITH AUTISM.
AND I WANT TO SPEAK ABOUT THE
POPULATION AMONG THEM.
HE IS ONE OF THEM, WHO DOES NOT
RESPOND TO IAC, WHO DOES NOT
RESPOND WELL TO COMPUTERS.
WHO DOES NOT RESPOND TO T.V. OR
SCREEN.
AND WHO NEEDS A WAY OF
COMMUNICATING, THE DIFFERENT
PICTURE COMMUNICATION OR -- HAVE
NOT BEEN SUCCESSFUL.
HOWEVER, THERE HAS BEEN SOME
SUCCESS WITH GESTURE AND
MODIFIED SIGN LANGUAGE.
AND I WOULD LIKE TO BRING THE
ATTENTION TO THE POPULATION WHO
IS NOT RESPONSIVE TO OTHER
METHODS, BUT IS VERY ENGAGED
WITH EYE CONTACT AND WITH
INTERACTION, DIRECT INTERACTION,
WITH PEOPLE.
AND SUGGESTING THAT MORE
RESEARCH AND MAYBE EVEN AT A
YOUNGER AGE OF TRYING TO SEE
WHAT CAN BE ACCOMPLISHED BY
FOCUSING ON GESTURE AND SIGN
LANGUAGE OR AT LEAST MODIFIED
SIGN LANGUAGE TO AT LEAST ENGAGE
THEM AND EXPRESS THEM.
THE BASIC COMMUNICATION FOR
LIFE.
>> DR. COOPER: THANK YOU.
NEXT JOHN ROBISON WHO IS A
SELF-ADVOCATE AND ALSO A
VISITING SCHOLAR.
JOHN, DO YOU WANT TO TURN YOUR
CAMERA ON?
THERE YOU GO.
>> JOHN ROBISON: THANK YOU FOR
INVITING ME TO JOIN Y'ALL TODAY.
FIRST, I'D LIKE, AS AN AUTISTIC
PERSON, TO SECOND WHAT SHE SAID
ABOUT RESPECTFUL DISCOURSE IN
THESE THINGS.
IN MY TIME IN GOVERNMENT SERVICE
ON THESE COMMITTEES, I HAVE
CERTAINLY SEEN A LOT OF ISSUES
AROUND THAT.
IT'S ALWAYS IMPORTANT TO KEEP IN
MIND THAT NO MATTER WHAT OUR
DIFFERENCES ARE, I THINK IT'S
FAIR TO SAY THAT EVERY SINGLE
ONE OF US WANTS ONE SAME THING.
AND THAT IS A GOOD QUALITY OF
LIFE.
A SAFE, HAPPY LIFE FOR PEOPLE
WHO LIVE WITH AUTISM AND
DEVELOPMENTAL DIFFERENCES AND
THEIR FAMILIES.
WE SHOULD ALL AGREE TO SET ASIDE
DIFFERENCES, I THINK, AND MOVE
FORWARD IN PURSUIT OF THAT GOAL.
AND I SEE THE LIST OF PANELISTS,
AND MAYBE SHE'LL SPEAK TO THIS,
I SEE THAT AMY IS FOLLOWING ME
WITH WORDS ABOUT HER MINIMALLY
EVENTUAL AUTISTIC SON.
SOMETIMES PEOPLE THINK THAT
AUTISTIC PEOPLE HAVE AN INHERENT
ABILITY TO UNDERSTAND AUTISTIC
PEOPLE EVEN WHEN THEY DO NOT
SPEAK.
HAVING GROWN UP WITH AUTISTIC
PEOPLE WHO DID NOT SPEAK, AND
HAVING SAT AND SPENT TIME WITH
AMY AND HER FAMILY AND HER
SON -- I CAN TELL YOU AS AN
AUTISTIC PERSON, THAT'S NOT A
MAGIC PILL TO HELP ME
COMMUNICATE WITH THEM.
AND I THINK THAT THAT TAKES ME
TO THE QUESTION THAT SHOULD BE
FUNDAMENTAL TO WHAT NICD -- I'M
SORRY, NIDCD, SHOULD BE TRYING
TO ANSWER.
AND THAT IS, WHAT ARE MINIMALLY
EVENTUAL PEOPLE ASKING?
WHAT DO THEY WANT?
WHAT DOES AMY'S SON WANT?
WHAT DOES GRANT WANT?
WHAT DO ALL OF US WANT?
AND I THINK BEFORE SETTING THAT
ASIDE IS AN OBVIOUS THING.
WE HAVE TO LOOK AT A FUNDAMENTAL
WEAKNESS IN NIDCD TO ANSWER THAT
QUESTION.
AS THE GOVERNMENT AGENCY WHO HAS
ADDRESSED HEARING LOSS, NIDCD
ABSOLUTELY HAS PEOPLE WHO ARE
SKILLED IN THE TECHNICAL ASPECTS
OF THINGS LIKE HEARING AIDS.
BUT IF WE WANT TO ANSWER A BASIC
QUESTION, WHAT IS A NON-SPEAKING
PERSON THINKING?
WE NEED TO USE THE LATEST
TECHNOLOGY.
WE NEED TO USE AI.
WE NEED TO USE EMERGENT
TECHNOLOGIES TO READ
EXPRESSIONS, TO READ BODY
LANGUAGE.
WE NEED TO USE DIFFERENT
MECHANISMS THAN KEYBOARDS AND
iPADS TO HELP NON-SPEAKING
PEOPLE COMMUNICATE.
WHAT I WOULD URGE IS THAT NOT
ONLY DOES NIDCD KEEP THE FOCUS
ON WHAT ARE WE THINKING, BUT
THAT THEY SIGNIFICANTLY EXPAND
THEIR STAFF WITH CAPABILITIES IN
THE EMERGING TECHNICAL AREAS.
NIH IS AN ABSOLUTE WORLD LEADER
IN MEDICAL SCIENCE.
BUT NIH IS WAY BEHIND THE TIMES
IN ELECTRICAL ENGINEERING AND
COMPUTER ENGINEERING AND
MATHEMATICAL THEORY.
THERE IS SO MUCH THAT COULD HELP
OUR COMMUNITY.
AND I URGE YOU TO TAKE THAT TO
HEART AND TO REMEMBER THAT WE DO
STAND TOGETHER.
WHEN GRANT SAID IN HIS TALK THAT
HE WANTS US TO BE MINDFUL OF
STRESS, LET ME JUST STRONGLY
SECOND HIS OPINION.
JUST AS HE FEELS STRESS AND
TRAUMA FROM HIS COMMUNICATION
DISABILITIES, I FEEL STRESS AND
TRAUMA FROM MY COMMUNICATION
DISABILITIES.
AND I THINK IT'S FAIR TO SAY
THAT EVERY AUTISTIC PERSON
SUFFERS FROM THAT BECAUSE AUTISM
IS A COMMUNICATION DISABILITY.
AND I HOPE THAT THAT IS USEFUL
AND THANK YOU.
>> DR. COOPER: THANK YOU VERY
MUCH, JOHN.
NEXT WE'LL HEAR FROM JASMINE
GILLIS WHO IS A SPEECH-LANGUAGE
PATHOLOGIST.
SO JASMINE?
>> JASMINE GILLIS: YES, I'M A
PEDIATRIC SPEECH-LANGUAGE
PATHOLOGIST AND BOARD CERTIFIED
BEHAVIOR ANALYST AND I SPENT THE
BETTER PART OF THE LAST 20 OR SO
YEARS WORKING WITH CHILDREN WITH
AUTISM.
MY CURRENT ROLE IS AS EXECUTIVE
DIRECTOR OF SNL THERAPY AT
PEDIATRIC SPEECH-LANGUAGE
PATHOLOGY PRACTICE WITH FOUR
LOCATIONS IN AND AROUND THE
BOSTON AREA.
WE SEE CHILDREN WITH A WIDE
VARIETY OF COMMUNICATION NEEDS
BUT SPECIALIZE IN THE TREATMENT
OF CHILDREN WITH AUTISM AND WORK
WITH MANY CHILDREN WHO ARE
CLASSIFIED AS MINIMALLY VERBAL
TO BUILD VERBAL COMMUNICATION
SKILLS.
OFTENTIMES PARENTS OR
PROFESSIONALS SEEK OUT OUR
SERVICES TO AUGMENT WHAT THEY
ARE ALREADY RECEIVING AND
ALREADY HAVE AS A ROBUST
CONSOLATION OF INTERVENTIONS.
BUT TO PROVIDE A BEST SHOT OR
ATTEMPT AT VERBAL COMMUNICATION.
SO MY CURRENT POSITION IS ONE
WHERE I WORK WITH CHILDREN
ONE-ON-ONE AND ALSO WORK TO
DEVELOP TREATMENT PLANS AND WITH
THE GOAL BEING FUNCTIONAL
COMMUNICATION.
AND I ALSO SUPERVISE A COUPLE
DOZEN OTHER PATHOLOGIST WHO
PROVIDE SIMILAR INTERVENTIONS.
THE RESEARCH QUESTION I HAVE IS
SIMPLE.
WHAT ARE THE UNDERLYING
MECHANISMS THAT SUPPORT THE
TRANSITION FROM SPEECH OR SOUND
PRODUCTION TO EXPRESSIVE
COMMUNICATION OR THE EXPRESSION
OF SHUTTLE AND IDEAS IN CHILDREN
WHO ARE MINIMALLY EVENTUAL?
FOR US -- VERBAL.
WE DEVELOP MANY SKILLS STARTING
WITH PARTICIPATION IN SESSIONS
TO SUPPORT LEARNING, JOINT
ATTENTION, RECIPROCITY AND
SPEECH SOUND PRODUCTION FORMING
SOMEWHAT SMALL AND ARBITRARY
VOCAL TARGETS OF, FOR EXAMPLE, I
CAN TEACH A CHILD TO SAY, BOB OR
MOM OR BOO.
AND WE CAN GOOD AT ELICITING
THOSE SOUNDS AND THEY SOUND LIKE
WORDS, MANY TIMES WE HAVE A
BARRIER TO ENTRY TO TRUE INTENT.
SO EVEN THOUGH SMALL WORDS CAN
HAVE MEANING, FUNCTIONALLY
GETTING TO A PLACE OF FUNCTIONAL
INDEPENDENT USE IS AN ENTIRELY
DIFFERENT TASK.
AND SO, DON'T KNOW IF IT'S A
MATTER OF INTENSITY OR
GENERALIZATION BUT TIME AND TIME
AGAIN WE CAN BE SUCCESSFUL IN
BUILDING A REPERTOIRE OF SOUNDS,
SYLLABLES OR WORDS.
BUT THE TRANSITION TO
ESTABLISHING AND SUPPORTING
COMMUNICATION IS WHERE WE
CONTINUE TO SEE A CHALLENGE FOR
THESE YOUNG CHILDREN.
THANK YOU.
>> DR. COOPER: THANK YOU.
NEXT WE WILL ASK ZACHARY
WILLIAMS WHO IS A SELF-ADVOCATE
AND ALSO AN M.D., PH.D. STUDENT.
IF YOU WILL UNMUTE, YOU WILL BE
READY TO GO.
THANK YOU.
>> ZACK WILLIAMS: THANK YOU.
SO I JUST LIKE TO FIRST THANK
YOU FOR HOLDING THIS CONFERENCE.
IT'S TRULY WONDERFUL TO SEE ALL
OF THESE DIFFERENT VOICES
REPRESENTED HERE AND I'D LIKE TO
ECHO WHAT JOHN AND MANY OTHERS
HAVE ALREADY SAID ABOUT BRINGING
PEOPLE TOGETHER AND THE UNITY
BEHIND THE PERSPECTIVES OF
WANTING TO SUPPORT NON-SPEAKING
AUTISTIC PEOPLE AND IMPROVE
QUALITY OF LIFE
ACROSS-THE-BOARD.
FOR ME, I THINK ONE OF THE REAL,
PART HEART OF THE MATTER IS
TRULY FIGURING OUT WHAT ARE YOU
THE OUTCOMES?
SPECIFICALLY MY ANSWER TO THIS
IS WHICH SPECIFIC OUTCOMES
SHOULD BE TARGETED?
BY THINGS LIKE LANGUAGE
INTERVENTION IN ORDER TO
MAXIMALLY IMPROVE SUBJECTIVE
WELL-BEING AND QUALITY OF LIFE
OF MINIMALLY EVENTUAL OR
NON-SPEAKING PEOPLE ACROSS THE
LIFESPAN.
IT'S IMPORTANT TO FOCUS ON
CLARIFYING THESE INTERVENTION
TARGETS AND ALSO DETERMINING
WHAT SORTS OF EVIDENCE WE SHOULD
CONSIDER WHEN MAKING THOSE KINDS
OF JUDGMENT.
ARE WE GOING TO THINK ABOUT WHAT
KINDS OF OUTCOME MEASURES ARE
AVAILABLE?
ARE WE GOING TO THINK ABOUT WHAT
OUTCOME MEASURES ARE FEASIBLE?
THE WAYS IN WHICH THE COMMUNITY
CONSIDERS THE OUTCOME MEASURES?
HOW STAKEHOLDERS FIND THEM?
HOW WE DIFFERENT PEOPLE
ADMINISTERING THEM FIND THEMET?
SETRA.
THESE ARE ALL TYPES OF EVIDENCE
THAT CAN BE USED TO MAINTAIN
FAIRLY HOLISTIC JUDGMENTS ABOUT
AN OUTCOME AND NOT ONE WAY TO
SAY, THIS IS THE BEST OUTCOME.
AND SECOND ASPECT OF THIS IS,
ONCE THE TARGETS OF INTERVENTION
ARE THEMSELVES SELECTED, IS
FIGURING OUT HOW BEST TO
OPERATIONALIZE AND MEASURE THESE
OUTCOMES.
AND FOR INSTANCE, WHAT DOES
SOMETHING LIKE IN IMPROVED
FUNCTIONAL COMMUNICATION
ACTUALLY LOOK LIKE?
I THINK WE CAN ALL THINK THAT
SOUNDS LIKE A GREAT OUTCOME IN
LANGUAGE INTERVENTION.
BUT THE OPERATIONALIZATION OF
WHAT FUNCTIONAL COMMUNICATION
ACTUALLY MEANS IS VERY
DIFFICULT.
AND IT OFTEN CHANGES
DEVELOPMENTALLY AND CHANGES IN
DIFFERENT CASES.
AND ACTUALLY PUTTING THAT INTO A
REAL MEASURE AND MAKING THAT
STANDARDIZED ACROSS THE TRIAL,
ACROSS DIFFERENT CASES ACROSS
DIFFERENT DEVELOPMENTAL STAGES
IS VERY CHALLENGING.
AND ALSO JUST BASIC PSYCHOMETRIC
AND MEASUREMENT DEVELOPMENT WORK
ESPECIALLY IN THE NON-SPEAKING
OR MINIMALLY VERBAL POPULATION
IS LACKING YET IT'S VERY
IMPORTANT NOT TO ASSUME THAT
MEASURES DEVELOP IN OTHER
DEVELOPMENTAL POPULATIONS AND
TYPICAL POPULATIONS OR EVEN
REMOTELY VALID WHEN THEY ARE
USED IN PEOPLE WHO DON'T PRODUCE
OR SOMETIMES UNDERSTAND A LOT OF
VERBAL LANGUAGE.
SO REALLY THERE NEEDS TO BE MORE
SPECIALIZED MEASUREMENT WORK IN
THIS POPULATION.
IT'S SIMPLY NOT A POPULATION YOU
CAN EASILY GENERALIZE TO.
AND THEN LAST THING IS THAT
STAKEHOLDER PERSPECTIVES OF
AUTISTIC PEOPLE THAT ALSO HAVE
FAMILY MEMBERS AND SUPPORT
PEOPLE.
THEY PLAY A LARGE ROLE IN BOTH
PROCESSES.
THEY CAN PROVIDE PERSPECTIVES ON
USABILITY OF MEASURES, RELEVANCE
OF MEASURES AND THINKING ABOUT
WHEN SOMETHING IS GOING TO BE
HELPFUL TO KNOWLEDGING OR
IMPROVING AN INDIVIDUAL'S
QUALITY OF LIFE --
UNDERSTANDING -- ASKING THE
FAMILY, ASKING THE INDIVIDUAL,
GETTING A SENSE OF OBSERVATION
ET CETERA.
ALL OF THOSE ARE GOING TO BE
WELL INFORMED BY INCORPORATING
THE FOLKS WHO ARE ON THE GROUND
EXPERIENCING THOSE THINGS INTO
THAT JUDGMENT.
SO THANK YOU VERY MUCH.
>> DR. COOPER.
THANK YOU, ZACK.
NEXT WE'LL GO TO JENNIFER KENT.
SHE IS A SPEECH-LANGUAGE
PATHOLOGIST AND CLINICAL
RESEARCHER.
IF YOU JUST UNMUTE, YOU'RE READY
TO GO.
>> A KENT KENT: THANK YOU VERY
MUCH.
I REALLY APPRECIATE THE
INVITATION TO PARTICIPATE TODAY.
JENNIFER KENT: AS I REPRESENT
THE SORT OF PERSPECTIVE OF THE
CLINICAL RESEARCHER, I'M
CERTAINLY NOT OPERATING ALONE SO
I THOUGHT IT WAS IMPORTANT TO
CONTEXTUALIZE AS OTHERS HAVE
DONE, THE ENVIRONMENT IN WHICH
I'M WORKING ON A DAILY BASIS.
AND HOW THE QUESTION WHICH IS
VERY DIFFICULT TO NARY DOWN TO
ONE QUESTION, BUT HOW I SORT OF
ARRIVED THAT THE IN
COLLABORATION WITH MANY
COLLEAGUES AS YOU SEE HERE AT
THE UNIVERSITY OF CENTRAL
FLORIDA.
REPRESENTING SPEECH-LANGUAGE
PATHOLOGIST, BEHAVIORAL ANALYSTS
AND EDUCATORS AS WE WORK WITH
ENGINEERS AND INDUSTRY PARTNERS
AND COMMUNITY PARTNERS AS WELL
AS SELF ADVOCATES AND FAMILIES
AND PROVIDERS.
SO ON A DAILY BASIS WHERE I'M
WORKING WITH THESE POPULATION OF
INDIVIDUALS WITH AUTISM AND
RELATED DISABILITIES THROUGH OUR
CENTER FOR AUTISM AND RELATED
DISABILITIES.
OUR ASSISTIVE TECHNOLOGY CENTER,
EARLY INTERVENTION TECHNICAL
ASSISTANCE PROGRAMS, GO BABY GO
AND COMMUNITY PROGRAMS.
WE HAVE THE GOOD FORTUNE OF
BEING INVOLVED AND HEARING FROM
AND TRYING AND DEVELOPING THE
WORK THAT WE HAVE IN THE
ONGOING.
SO WE REALLY HAVE A FOCUS ACROSS
A NUMBER OF DIFFERENT AREAS AND
THIS IS CERTAINLY NOT AN
EXHAUSTIVE LIST BUT REALLY
HAVING GREAT FOCUS ON EARLY
INTERVENTION, PLAY, EARLY
LANGUAGE DEVELOPMENT,
EDUCATIONAL AND FAMILY
EXPERIENCES, SENSORY
INTEGRATION, TECHNOLOGY
DEVELOPMENT AND APPLICATION,
BOTH THROUGH SOME OF THE LATEST
3D PRINTING OPTIONS, MOBILITY,
HOLOGRAM, TECHNOLOGY AND
IMMERSIVE TECHNOLOGIES AS WELL
AS AAC IN GENERAL.
SO MANY OF US HAVE A FOCUS WHEN
IT COMES TO SORT OF THAT ONGOING
CYCLE OF ASSESSMENT AND
INTERVENTION AND HOW THAT LEADS
WHAT WE ARE DOING IN THE
ONGOING.
AS WE COME TOGETHER AND
COLLECTIVELY WORK ELBOW TO ELBOW
AND COLLABORATE AND HAVE THE
OPPORTUNITY BECAUSE OF THIS
EVENT TO REALLY COME TOGETHER
AGAIN AS A GROUP AND TALK ABOUT
WHERE DO WE CONVERGE?
WHAT ARE WE MOST CONCERNED ABOUT
AS A GROUP?
THAT REALLY LED US TO
IMPLEMENTATION ACROSS-THE-BOARD.
SO WHAT WE ARE ALL VERY
CONCERNED WITH IS HOW WE CAN
BEST SUPPORT IMPLEMENTATION OF
EVIDENCE BASED LANGUAGE
ASSESSMENT AND INTERVENTION
APPROACHES THROUGH STATE OF THE
SCIENCE TECHNOLOGY TOOLS.
VERBAL AND NON-SPEAKING
INDIVIDUALS.
AND THE OTHER KEY ASPECT OF THAT
IS REALLY IN THEIR DAILY
ENVIRONMENTS.
AND IN A HOLISTIC MANNER.
AS SOMEONE EMPLOYEES MENTIONED,
Mr. BLASCO, LOOKING AT THOSE
AREAS THAT ARE INTERCONNECTED
WITH COMMUNICATION SUCCESS.
HOW ALL THOSE THINGS FEED EACH
OTHER AND REALLY INFORM THE
SUCCESS.
IT'S SOMETHING THAT MIGHT BE AN
INTERVENTION THAT CAN IMPROVE
OUTCOMES IN ONE AREA BUT REALLY
ISN'T ACCEPTABLE TO THE
INDIVIDUAL.
IT ISN'T ACCEPTABLE TO THOSE IN
THE ENVIRONMENT WHETHER THAT BE
THE FAMILY THAT THE
COMMUNICATION PARTNERS, THE
EDUCATORS, THEN WHAT IS THE
POINT?
WE HAVE A LOT OF CONCERN WITH
HOW WE'RE PROCEEDING IN
DEVELOPING OUR PROGRAMS OF
RESEARCH TO MAKE SURE THAT WE
REALLY ARE CONSIDERING THAT
IMPLEMENTATION SCIENCE ASPECT.
SO I'LL LEAVE IT AT THAT.
AS HARD AS IT WAS TO NARROW
DOWN.
>> DR. COOPER: THANK YOU,
JENNIFER.
OKAY, OUR LAST STAKEHOLDER IS
STEPHEN SHORE.
STEPHEN IS A SELF-ADVOCATE AND A
SPECIAL EDUCATION PROFESSIONAL.
STEPHEN, I SEE YOUR SCREEN AND
YOU'RE READY TO GO.
>> TEACH SHORE:STEPHEN SHORE: IO
BE HERE TO GIVE US THE
OPPORTUNITY TO RESPECTFULLY
ADVOCATE AND DISCUSS WHAT WE
FEEL IS BEST FOR NON-SPEAKING
AUTISTIC INDIVIDUALS.
I EXPERIENCED A GOOD AMOUNT OF
THAT IN THE FALL, LAST FALL AT A
FIRST PLACE CONFERENCE WITH
DENISE RESNICK.
AMY WAS THERE TOO.
AND THERE WAS A LOT OF TALK
ABOUT RESPECTFUL ADVOCACY AND
LISTENING TO EACH OTHER.
AND THAT IS SO, SO ENCOURAGING.
AS I LISTENED TO MY AUTISTIC
COLLEAGUES SPEAK, WHAT REALLY
CAME TO THE FOREFRONT IS THE
IMPORTANCE OF INVOLVING AUTISTIC
PEOPLE AS YOU ARE DOING HERE.
AND I THINK THAT IS GREAT.
MEANINGFUL AND AUTHENTIC
INVOLVEMENT OF AUTISTIC PEOPLE
IN ALL ASPECTS OF RESEARCH.
I AM NOW ON MY -- INVOLVED IN MY
FOURTH OR FIFTH PCORI GRANT
PROJECT.
A MAIN ASPECT OF THESE PROJECTS
INVOLVE AUTISTIC INVOLVEMENT.
AND WE HAVE STUDIED AUTISTIC
ENGAGEMENT SO WE CAN MAKE SURE
THAT IT'S MAXIMIZED IN THE AREAS
OF RESEARCH.
SO THAT'S SOMETHING THAT WE NEED
TO DO.
GRANT SAID IT, JOHN SAID IT,
ZACHARY SAID IT.
OTHER AUTISTIC PEOPLE SAID IT.
THERE IS RESEARCH ALSO
SUGGESTING THAT WHEN AUTISTIC
PEOPLE ARE MEANINGFULLY INVOLVED
IN RESEARCH, THAT THERE IS
GREATER RELIABILITY AND
VALIDITY.
WHAT IS IMPORTANT TO US?
ASK US.
GET TO KNOW US.
AND IN DOING SO, I FEEL THAT WE
CAN WORK TOGETHER IN RESPECTFUL
DISCOURSE N RESPECTFUL RESEARCH.
WHILE WE MAY HAVE MANY DIFFERENT
IDEAS OF WHAT WE WANT TO STUDY
AS JOHN SAID, WE ALL WANT TO
MAXIMIZE A GOOD QUALITY OF LIFE
FOR AUTISTIC PEOPLE.
I THINK THAT IS SOMETHING WE CAN
ALL AGREE ON.
AND THAT IS WHAT SHOULD BE
PULLING US ALL TOGETHER.
>> DR. COOPER: THANK YOU.
WHAT A WONDERFUL WAY TO START
THE DAY!
WITH A LOT OF PERSPECTIVES FROM
FOLKS WHO HAVE ENTERED THE
AUTISM WORLD IN A VARIETY OF
DIFFERENT WAYS.
THANK YOU.
AND WE ARE READY TO MOVE ON NOW
TO OUR FIRST PRESENTATION.
HOW FAR HAVE WE COME SINCE THE
WORKSHOP HELD IN 2010?
AND HELEN, OUR CO-CHAIR, WILL
WALK YOU THROUGH THOSE COMMENTS.
HELEN?
>> HELEN TAGER-FLUSBERG: OKAY,
HOLD ON.
I'M SORRY.
>> DR. COOPER: THAT'S OKAY.
TAKE YOUR TIME.
>> HELEN TAGER-FLUSBERG: OKAY,
MY PRESENTATION IS NOT -- THERE
WE GO.
CAN EVERYONE SEE MY SCREEN?
>> DR. COOPER: YES, YOU'RE FINE.
>> HELEN TAGER-FLUSBERG: THANK
YOU.
I HAVE TO SAY THAT'S A HARD ACT
TO FOLLOW.
OUR WONDERFUL, ELOQUENT, WISE
ROUNDTABLE PRESENTERS.
IT'S SO INSPIRING TO ME
PERSONALLY TO HEAR YOUR
COMMITMENT AND YOUR ASPIRATIONS
AND ALL YOUR WONDERFUL IDEAS.
I ALSO REALLY WANT TO THANK
DR. COOPER AND THE LEADERSHIP AT
NIDCD FOR INITIATING AND BEING
THE FORCE BEHIND THIS WEBINAR.
SO IN MY BRIEF TALK, WHAT I'M
GOING TO DO IS TO FOCUS ON
ESSENTIALLY A SMALL SAMPLE OF
WHAT I THINK HAS BEEN
ACCOMPLISHED ON RESEARCH ON
MINIMALLY VERBAL AND
NON-SPEAKING PEOPLE WITH AUTISM
SINCE OUR WORKSHOP HELD BACK IN
2010.
I'M GOING TO LEAVE THE
INTERVENTIONS RESEARCH PIECE OF
WHAT WE HAVE ACCOMPLISHED TO MY
COLLEAGUE, KAREN CHENAUSKY.
WE PUBLISHED TWO PAPERS THAT
CAME OUT IN 2013 THAT WERE A
RESULT OF THAT WEBINAR.
AND I WAS CITED TO SEE EARLIER
TODAY THAT THERE ARE OVER 1000
CITATIONS TO THOSE PAPERS.
AND WHAT WE CAN SEE HERE ARE THE
INCREASE IN PUBLICATIONS.
I DID A QUICK SEARCH ON PUBMED
AND YOU CAN SEE BACK WHEN WE
HELD THE WORKSHOP THERE WAS
SIMPLY NOTHING.
NOBODY WAS PUBLISHING ANYTHING
ON THIS POPULATION.
AND NOW WE SEE THAT THERE IS A
ROBUST AND SUSTAINED INCREASE IN
RESEARCH PUBLICATIONS ON THIS
POPULATION.
THERE HAS ALSO BEEN INCREASED
FUNDING AND INCREASED RESEARCH
ATTENTION.
ACCORDING TO NIH REPORTER, THERE
IS NOW 18 ACTIVE PROJECTS ON
THIS POPULATION.
AND AN ANNUAL FUNDING OF 11
MILLION DOLLARS.
AUTISM SPEAKS, IN FACT WAY BACK
WHEN, ACTUALLY INITIATED ALL OF
THIS FUNDING EARLY-STAGE
PROJECTS.
WE SHOULD GIVE A SHOUT OUT TO
THE PERSON WHOINS STA GATED THIS
AT AUTISM SPEAKS.
AND IT THEN SNOWBALLED INTO WHAT
WE HAVE TODAY.
THE SCIENCE FOUNDATION, SFARI
FUNDS SEVERAL PROJECTS.
INCLUDING SIMON'S SEARCH LIGHT
WHICH FOCUSES ON INDIVIDUALS
WITH SPECIFIC GENETIC MUTATIONS.
AND THESE ARE FOR THE MOST PART
PEOPLE WITH SPEECH AND SEVERE
SPEECH AND LANGUAGE IMPAIRMENTS.
AS WELL AS THE AUTISM INPATIENT
COLLECTION.
THEY TOO -- THERE IS A
SIGNIFICANT OVER REPRESENTATION
OF THE MINIMALLY VERBAL AND
NON-SPEAKING.
AND FINALLY, THE AUTISM SCIENCE
FOUNDATION ISSUED A SPECIAL
REQUEST FOR GRANT APPLICATIONS
AND JUST THIS MONTH AWARDED FOUR
GRANTS ON PROFOUND AUTISM.
IN TERMS OF RESEARCH INTERESTS
AT THE INTERNATIONAL SOCIETY FOR
AUTISM RESEARCH, WE SPONSOR
SPECIAL INTEREST GROUPS AND
RIGHT AFTER THE WORKSHOP, A
GROUP PULLED TOGETHER A SIG THAT
FOCUSED ON THIS POPULATION THIS
WENT FOR THREE YEARS.
AND IT ATTRACTED OVER100 PEOPLE
AT THEIR VERY EARLY MORNING
BREAKFAST MEETINGS.
AND THEN LAST YEAR, ANOTHER SIG
WAS INITIATED ON SEVERE AND
CHARGING BEHAVIOR.
AGAIN, OVERLAPPING WITH THE
FOCUS OF OUR WEBINAR TODAY.
SO LET'S TURN TO THE RESEARCH.
NEW MEASURES FOR THIS
POPULATION.
A MAJOR BARRIER -- THIS WAS
POINTED OUT BY SOME OF THE
STAKEHOLDERS -- IS LIMITED,
RELIABLE AND VALID MEASURES TO
ASSESS LOTS OF THINGS IN THIS
POPULATION.
I'LL FOCUS ON LANGUAGE AND
COMMUNICATION IN CHILDREN,
ADOLESCENTS AND ADULTS WHO ARE
MINIMALLY OR NON-SPEAKING.
AND THERE HAVE BEEN SEVERAL
EXCITING DEVELOPMENTS, BOTH IN
RECEPTIVE AND EXPRESSIVE
LANGUAGE.
SO JUST TO HIGHLIGHT THE
PROBLEM.
IN RECEPTIVE VOCABULARY, THIS IS
FROM OVER 100 CHILDREN AND
ADOLESCENTS.
PARENTS REPORT QUITE A LOT OF
RECEPTIVE VOCABULARY BUT FOR
THOSE SAME CHILDREN, OF COURSE
THERE IS LIMITED OR NO
EXPRESSIVE VOCABULARY.
SO WHAT KINDS OF DEVELOPMENTS
HAVE WE SEEN IN RECEPTIVE
LANGUAGE?
THERE HAVE BEEN QUITE A FEW
PAPERS.
LET ME HIGHLIGHT THE INNOVATIONS
THE PEOPLE HAVE BEGUN TO
IDENTIFY THAT REVEAL GREATER
RECEPTIVE CAPACITIES THAN WE SEE
ON STANDARDIZED FORMAL TESTS.
ONE USING THE TOUCH SCREEN.
FOR SOME INDIVIDUALS WILL REVEAL
GREATER RECEPTIVE SKILLS.
OR A TABLET, OR USING EYE
TRACKING AS THEIR MEASURE OF
COMPREHENSION.
REPLACING PICTORIAL
REPRESENTATIONS WITH
THREE-DIMENSIONAL OBJECTS AND
FINALLY, LOOKING AT BRAIN
MEASURES, THE BRAIN SIGNALING
COMPREHENSION THROUGH
EVENT-RELATED POTENTIALS.
SO, THERE IS SOME WORK ON THIS.
THERE IS A LONG WAY TO GO,
HOWEVER.
WHEN IT COMES TO EXPRESSIVE
LANGUAGE AND COMMUNICATION,
AGAIN, THERE HAVE BEEN QUITE A
NUMBER OF DEVELOPMENTS.
OUR OWN GROUP, WE DEVELOPED A
PROTOCOL FOR COLLECTING NATURAL
LANGUAGE SAMPLES WHICH ARE
REALLY THE MOST EFFECTIVE WAY OF
CAPTURING A CHILD OR AN
ADOLESCENT EXPRESSIVE OR ADULTS
EXPRESSIVE LANGUAGE
COMMUNICATION CAPACITY.
WE CALLED IT THE ELSA.
I THINK ONE OF THE MOST
IMPORTANT FINDING FROM OUR
RESEARCH WHICH WE PUBLISHED IN A
SEPARATE PAPER, WAS THAT IF WE
ASKED PARENTS TO ADMINISTER
ELSA, A SET OF GAMES AND
ACTIVITIES, AND COMPARED PARENTS
TO TESTERS, TRAINED TESTERS.
THE CHILDREN SPOKE TWICE AS MUCH
AND USED EXCISE AS MANY
DIFFERENT WORDS WHEN THEY WERE
INTERACTING WITH THEIR PARENTS
COMPARED TO THE TRAINED TESTERS.
AND I THINK THAT HAS AN
IMPORTANT IMPLICATION FOR HOW WE
THINK ABOUT ASSESSMENT FOR THIS
POPULATION.
AND THEN THERE HAVE BEEN THESE
OTHER SURVEYS AND MEASURES OF
CHANGE IN SOCIAL COMMUNICATION
THAT HAVE ALSO BEEN DEVELOPED.
IN MY FINAL SET OF RESEARCH
ACCOMPLISHMENTS, LET ME TALK
ABOUT STUDIES THAT HAVE LOOKED
AT EXPLAINING WHY DOES THIS
POPULATION HAVE SUCH SIGNIFICANT
LIMITATIONS IN SPOKEN LANGUAGE?
ONE IS BEHAVIORAL PREDICTORS.
IMITATION, COGNITIVE
DISABILITIES, SYMBOLIC
KNOWLEDGE.
THESE ALL GO TO SOME WAY IN
EXPLAINING FOR SOME INDIVIDUALS
THE LIMITED OR ABSENCE OF SPOKEN
LANGUAGE.
SPEECH MOTOR FUNCTION.
THE PHONETIC REPERTOIRE AND
PARTICULARLY THE OVERLAP OR THE
CO-OCCURRING CONDITION OF
CHILDHOOD APPROXY OF SPEECH.
IT EXPLAINS IN PART THE LOW
VERBAL SPOKEN ABILITIES FOR MANY
INDIVIDUALS WHO ARE PART OF THIS
POPULATION.
AND FINALLY THERE IS AUDITORY
PROCESSING.
WHEN WE LOOK AT CORTICAL
PROCESSING OF SOUNDS, WE SEE
THAT THIS MAY BE RELATED TO THE
LIMITATIONS IN RECEPTIVE
LANGUAGE THAT ARE EVIDENT IN
SOME BUT NOT ALL INDIVIDUALS.
SO THERE IS SO MUCH MORE.
WE HAVE JUST BEGUN TO TOUCH THE
SURFACE OF THIS IMPORTANT
QUESTION.
AND HOPE THAT IN THE YEARS TO
COME WE'LL SEE MORE DEVELOPMENTS
EMERGE.
SO WHAT IS THE CURRENT STATE OF
THE SCIENCE?
THERE IS ENORMOUS HETEROGENEITY.
WE CAME INTO THIS 13 YEARS AGO
KNOWING ABOUT THE HETEROGENEITY
AND IT'S ONLY BEEN AMPLIFIED AS
WE HAVE MOVED FORWARD ALL OF US
IN THE SCIENTIFIC COMMUNITY WITH
RESEARCH.
THIS IS ENORMOUS HETEROGENEITY
AND OF COURSE WE HAVE ALREADY
EVEN SEEN THAT REPRESENTED IN
THE PRESENTATIONS FROM THE
STAKEHOLDERS.
THERE IS NO SINGLE BEST
MEASUREMENT APPROACH.
IN OUR WORK, WE SHOWED SOME OF
THE PARTICIPANTS DID BEST WITH
THE TABLETS.
SOME HAVE DONE BETTER WITH EYE
TRACKING AND YET OTHERS WE SEE
IT'S BRAIN MEASURES THAT PROVIDE
THE CLEAREST WINDOW INTO THEIR
RECEPTIVE SKILLS.
THERE IS NO SINGLE UNIFIED
EXPLANATION.
THERE ARE MULTIPLE REASONS EACH
INDIVIDUAL WHO IS MINIMALLY
VERBAL OR NON-SPEAKING IS INDEED
UNIQUE.
AND THERE MAY BE ONE OR MORE
REASONS FOR THE LIMITED SPOKEN
LANGUAGE.
AND OF COURSE THIS ALL MEANS,
AND WE'LL HEAR MORE FROM CONNIE
ON THIS, THAT THERE IS NOT A
SINGLE IDEAL INTERVENTION.
WE HAVE MADE PROGRESS OVER THE
LAST DECADE.
I DON'T WANT TO DENY THAT.
BUT THERE IS A LONG WAY FOR US
TO GO.
AND FINALLY LET ME JUST THANK
YOU ALL FOR LISTENING.
>> DR. COOPER.
YOU'RE MUTED AGAIN.
>> HELEN TAGER-FLUSBERG WELL,
HAVING --
[ MUTED ]
>> DR. COOPER: HELEN IS MUTED
AGAIN SO I'M GOING TO INTRODUCE
CONNIE.
>> HELEN TAGER-FLUSBERG: I HAVE
TO STAY AWAY FROM THE TOUCH PAD.
IT'S MY PLEASURE TO INTRODUCE MY
CO-CHAIR AND MY COLLEAGUE AND
DEAR FRIEND, CONNIE KASARI WHO
HAS BEEN WALKING THIS ADVENTURE
WITH ME FOR THE LAST MANY YEARS.
SO, TAKE IT AWAY, CONNIE.
>> CONNIE KASARI: HOPEFULLY YOU
CAN SEE MY SCREEN.
THANK YOU, HELEN.
SO I SECOND WHAT HELEN SAID.
WE MADE A LOT OF PROGRESS,
ESPECIALLY AROUND MEASUREMENT
AND DESCRIPTION OF THE
POPULATION.
BUT IN TERMS OF INTERVENTIONS
WHICH IS WHAT I'M GOING TO JUST
BRIEFLY TALK ABOUT, I THINK WE
HAD A LOT OF REALLY GOOD
COMMENTS IN OUR STAKEHOLDER
PANEL.
SO I WILL JUST HIGHLIGHT SOME OF
THEIR COMMENTS, ACTUALLY.
FIRST OF ALL, INTERVENTIONS ARE
REALLY HARD TO DO.
BUT WHAT WE KNOW SO FAR, BIG
PICTURE, IS THAT WE RECOGNIZE
THAT INTERVENTIONS, EDUCATION
AND SUPPORTS FOR AUTISTIC
INDIVIDUALS ARE NEEDED OVER THE
LIFESPAN AND THOSE OF ALL OVER
THE LIFESPAN.
THE SCIENCE OF TESTING
INTERVENTIONS HAS BECOME MORE
RIGOROUS RECENTLY.
WE HAVE MADE PROGRESS.
BUT IT REMAINS LACKING IN
SEQUENTIAL WAYS FOR MINIMALLY
VERBAL NON-SPEAKING INDIVIDUALS.
THESE INDIVIDUALS ARE STILL
UNDERSTUDY DESPITE OUR RECENT
EFFORTS, OFTEN EXCLUDED OR
SEGREGATED AND AT THE VERY LEAST
UNDER SUPPORTED.
WE ALSO RECOGNIZE THAT FOR
MINIMALLY VERBAL, NON-SPEAKING
INDIVIDUALS, ACCESS TO
COMMUNICATION IS CRITICAL AND
THAT OFTEN INVOLVES AAC BUT
DOESN'T HAVE TO.
IT COULD BE OTHER KINDS OF
SUPPORTS.
BUT WITH ALL INTERVENTIONS, WE
NEED TO CONSIDER THE CONTEXT.
WHAT IS THE ACTIVITY OR THE
EXPERIENCE THAT IS MEANINGFUL
THAT PROVIDES THE IMPETUS FOR
COMMUNICATION?
WE NEED TO ALSO RECOGNIZE THAT
THE IMPORTANCE OF OTHER FACTORS
BEYOND SPEAKING OR USING AUGUST
MENNATIVE SYSTEM.
DEVELOPMENT IS IMPORTANT T
EINVOLVES DRIVES THE
INTERVENTION AND THE SUPPORT
APPROACHES.
THERE ARE SIGNIFICANT MOTOR
IMPLICATIONS OR MOTOR APACKSIA,
NEURODEVELOPMENTAL.
WE'LL HEAR ABOUT SOME OF THAT
TODAY IN OUR NOVEL INTERVENTIONS
SECTION.
LITERACY AND OTHER ACADEMIC
EXPOSURE.
I'M VERY EXCITED THAT PEOPLE ARE
USING AND YOU'LL HEAR ABOUT
THIS, LITERACY AS A WAY INTO
LANGUAGE.
I THINK THAT IS EXTREMELY
IMPORTANT.
AND THEN MENTAL HEALTH AND
SENSORY ISSUES AS GRANT TALKED
ABOUT.
CO-OCCURRING CONDITIONS ARE ALSO
REALLY IMPORTANT.
WE STILL NEED TO TACKLE MANY
ISSUES SO JUST THE LANGUAGE TO
DESCRIBE WHO WE ARE TALKING
ABOUT.
WE STARTED OFF IN 2010 TALKING
ABOUT NON VERBAL INDIVIDUALS WHO
CAME OUT OF THAT WORKSHOP AND
KNOWING THAT MOST PEOPLE WEREN'T
NON VERBAL, THEY WERE MINIMALLY
VERBAL.
BUT NOW WE RECOGNIZE THAT WE ARE
BEYOND MINIMALLY VERBAL AND ALSO
INCLUDING NON-SPEAKING.
DEFINITIONS VARY.
AND MOST STUDIES DO NOT INCLUDE
ALL.
SO WE HAVE TO RECOGNIZE OUR
LIMITATIONS WHEN WE REPORT OUR
STUDIES.
THAT WE ARE TALKING ABOUT A VERY
SPECIFIC POPULATION.
AND THAT IS BECAUSE THE
INCLUSION FOR STUDIES RELY ON
SOME MEASURE OF RECEPTIVE
LANGUAGE OR COGNITION TO INCLUDE
PARTICIPANTS AS HELEN TALKED
ABOUT EARLIER.
BUT OUR ASSESSMENTS ARE STILL
LIMITED FOR MINIMALLY VERBAL
NON-SPEAKING.
HOW DOES MEASUREMENTS FAIL US?
WHAT ARE WE EXPECTING THE
INDIVIDUAL TO KNOW OR DO?
WHAT IS A MEANINGFUL STUDY
OUTCOME?
WHO IS DOING THE ASSESSMENT?
YES, BLINDED WE THINK THAT IS
VERY SCIENTIFICALLY RIGOROUS TO
BE BLINDED.
BUT UNKNOWN TO THE PARTICIPANT?
OR DO WE NEED A SKILLED,
EXPERIENCE TESTER WHO CAN BUILD
RAPPORT AND TRUST?
OR THE PARENT AS HELEN TALKED
ABOUT, WHO CAN GET MORE FROM
THEIR CHILD OR ADULT?
AND THEN WHO IS DOING THE
CODING?
OF COURSE WE WANT SOMEONE TO BE
BLINDED BUT THEY SHOULD ALSO BE
EXPERT IN NOTING SMALL BUT
MEANINGFUL CHANGES.
AND I THINK WE'LL HEAR ABOUT
SOME OF THAT LATER.
WE CAN DO BETTER.
A SINGLE INTERVENTION IS NOT
EFFECTIVE FOR ALL INDIVIDUALS.
AND WE ALL RECOGNIZE THAT.
INDIVIDUALS WILL VARY IN
RESPONSE TON AN INTERVENTION AND
WHAT WORKS NOW MAY NOT LATER AND
WHAT WORKS LATER MAY NOT WORK
NOW.
SO, WE NEED TO THINK ABOUT
PERSONALIZATION.
BUT HOW DO WE GET THERE.
SO, ONE, THERE ARE SEVERAL
DIFFERENT WAYS THAT PEOPLE AND I
THINK SOME WILL BE TALKING ABOUT
THIS TODAY, BUT INTERVENTION
MODULES ARE COMPONENTS THAT CAN
BUILD SUPPORT PROGRAMS.
INTERVENTION SHOULD ALSO
CONSIDER CONTEXT AND CULTURE AND
A CHANGING NATURE OF
DEVELOPMENT.
WE ARE STILL VERY UNDER
REPRESENTED IN RACIAL ETHNIC
LINGUISTIC DIVERSITY.
AND WE SHOULD PAY ATTENTION TO
NEWER EXPERIMENTAL DESIGNS THAT
ARE AIMED AT PERSONALIZATION AND
SYSTEM TIEING THOSE EFFECTIVE
CLINICAL PRACTICES IN SOME OF
OUR STAKEHOLDERS TALKED ABOUT
EARLIER.
WE DID DO AN INTERVENTION STUDY
SINCE THE LAST WORKSHOP AND THIS
IS JUST AN EXAMPLE.
THERE WAS, THAT THE TIME, A
CONTROVERSY, MAYBE STILL IS, IF
YOU PROVIDE AAC TO YOUNG
CHILDREN THAT IT WILL INHIBIT
THEIR SPOKEN LANGUAGE.
SO WE ASKED VERY SIMPLE QUESTION
WHETHER PROVIDING ACCESS TO AAC
AND THE CONTEXT OF PLAY-BASED
INTERVENTIONS WOULD IMPROVE
SPOKEN LANGUAGE INTO
5-8-YEAR-OLD VERBAL CHILDREN AT
THAT TIME IT WAS BELIEVED TO BE
THIS WINDOW OF POSSIBLE SPOKEN
LANGUAGE.
I THINK WE CAN REVISE THAT AT
THIS POINT.
SO THIS WAS THE CRAZY DESIGN
THAT WE USED BUT A SIMPLE
QUESTION.
SO, RANDOMIZING CHILDREN TO
RECEIVE THE INTERVENTION BUT
WITH OR WITHOUT AN AUGUST
MENNATIVE DEVICE.
AND THEN AFTER A PERIOD OF TIME,
RATING WHETHER THERE WAS A GOOD
RESPONSE OR NON RESPONDERS
SHOULD BE REALLY SLOWER
RESPONDER.
AND AUGMENTING FOR THOSE
CHILDREN THAT HAD A SLOWER
RESPONSE SO WE COULD POTENTIATE
THE POSSIBILITIES FOR THAT
INDIVIDUAL.
AND THAT WOULD BE TO EITHER
AUGMENT OR TO INTENSIFY THE
INTERVENTION.
AND WHAT WE'RE TESTING HERE IS
THIS WHOLE SEQUENCE.
KNOWING THAT ONE INTERVENTION
MAY NOT BE EFFECTIVE.
SO THESE TWO SEQUENCES WERE
COMPARED.
AND WHAT WE FOUND WAS THAT
CHILDREN WERE USING SPOKEN
COMMUNATIVE UTTERANCES IF THEY
HAD THE AAC RIGHT FROM THE
BEGINNING.
SO THAT GAVE US IMPORTANT
INFORMATION ABOUT THE SUPPORTS
THAT AUGMENTATION WITH AAC CAN
PROVIDE.
SO LET ME JUST FINISH UP BY
SAYING THAT WE NEED TO LOOK
FORWARD.
I THINK WE HAVE HEARD LOUD AND
CLEAR THAT COLLABORATIONS WITH
NON-SPEAKING AND MINIMALLY
VERBAL INDIVIDUALS AND THEIR
FAMILY MEMBERS IS REALLY
IMPORTANT.
AND THESE PARTICIPATORY RESEARCH
METHODS ARE MORE COMMON TODAY
BUT LESSOR JUST MAYBE BEGINNING
WITH MINIMALLY VERBAL
NON-SPEAKING.
BUT THOSING THISES NEEDS TO BE
IN THE DESIGN AND THE EXECUTION
AND THE INTERPRETATION OF
INTERVENTION STUDIES.
WE NEED RIGOROUS SCIENTIFIC
METHODS.
SO WE NEED EXPERIMENTAL CONTROLS
DESPITE THE TYPE OF METHOD THAT
YOU MAY USE.
AND IF YOU USE A GROUP DESIGN,
IT'S IMPORTANT THAT WE ARE FULLY
POWERED.
SO WE CAN EXAMINE FOR WHOM AND
WHY INTERVENTION MIGHT WORK.
AND THAT WE'RE ABLE TO ACTUALLY
PERSONALIZE THESE INTERVENTIONS.
WE NEED IMPROVED USE OF
TECHNOLOGY.
IMPROVED SYSTEMS FOR
COMMUNICATION.
I LOOK AT THE CONTROL OF A
SPEAKER LIKE GRANT OR JORDAN
WE'LL HEAR FROM TOMORROW.
AND WE NEED TO HAVE BETTER
SYSTEMS THAT MAKE COMMUNICATION
EASIER.
AND THEN THE USE OF TECHNOLOGY
FOR ASSESSMENT.
EYE TRACKING AND
ELECTROPHYSIOLOGY.
AND ASSESSMENT AND
INTERVENTIONS.
FINALLY ADDRESSING MENTAL HEALTH
AND OTHER CO-OCCURRING
CONDITIONS.
ANXIETY, DEPRESSION, AGGRESSION
OR CHALLENGING BEHAVIORS.
AND THE RESULTING TRAUMA.
WE NEED TO GET AHEAD OF THESE
ISSUES WITH AFFECTED AND I HAVE
APPROPRIATE INTERVENTIONS AND
SUPPORTS.
AND I'LL JUST FINALLY END WITH A
WORD ABOUT VOICE.
THE POPULATION OF MINIMALLY
VERBAL NON-SPEAKING INDIVIDUALS
IS INCREDIBLY DIVERSE AS WE
HEARD.
INTERVENTIONS AND OUTCOMES ARE
GOING TO BE VARIED.
WE NEED CREATIVITY, FLEXIBILITY
AND OPEN-MINDEDNESS AS WE GO
FORWARD.
SO PLEASE CONSIDER BOTH FIRST
AND SECOND VOICE AS WE HEAR FROM
OUR PRESENTERS.
WE HAVE AAC SPEAKERS AS
PARTICIPANTS WHO SPEAK IN FIRST
VOICE AND THEN SPEAKERS WILL
SPEAK IN SECOND VOICE.
WE RESPECT BOTH AND WE REALLY
VALUE YOUR PARTICIPATION AS WE
THINK ABOUT THESE NOVEL
INTERVENTIONS FOR THE FUTURE.
THANK YOU.
AND NOW I BELIEVE WE ARE GOING
TO START WITH OUR PANEL SECTION
ON NOVEL INTERVENTION APPROACHES
FOR MINIMALLY VERBAL
NON-SPEAKING INDIVIDUALS.
AND WE ARE REALLY EXCITED.
WE HAVE A VARIETY OF PEOPLE THAT
WILL BE TALKING ABOUT SOME VERY
IMPORTANT ISSUES.
FIRST, JANICE, ARE YOU -- TURN
ON YOUR CAMERA.
GREAT.
JANICE LIGHT WILL BE TALKING
ABOUT AUGUST MENNATIVE AND
ALTERNATIVE COMMUNICATION
INTERVENTION TO BUILD
COMMUNICATION, LANGUAGE AND
LITERACY SKILLS WITH CHILDREN ON
THE AUTISM SPECTRUM.
THANK YOU.
>> JANICE LIGHT: THANK YOU VERY
MUCH, CONNIE.
MANY THANKS TO YOU AND HELEN AND
TO JUDITH FOR ORGANIZING THIS
WORKSHOP.
IT'S JUST SO CRITICALLY
IMPORTANT.
MY NAME IS JANICE LIGHT.
I'M ON FACULTY IN THE
DEVELOPMENT OF COMMUNICATION
SCIENCES AND DISORDERS AT PENN
STATE UNIVERSITY.
AND I HAVE THE HONOR AND
PLEASURE TO SERVE AS THE
PRINCIPAL INVESTIGATOR OF THE
REHABILITATION ENGINEERING
RESEARCH CENTER ON AUGUST
MENNATIVE AND ALTERNATIVE
COMMUNICATION.
IN THAT ROLE, I HAVE THE
OPPORTUNITY ON A DAILY BASIS TO
INTERACT WITH A WIDE RANGE OF
INDIVIDUALS WHO RELY ON AAC AND
THEIR FAMILIES.
I HAVE LEARNED A TREMENDOUS
AMOUNT FROM THEM AND I AM
INCREDIBLY GRATEFUL TO THEM FOR
ALLOWING ME TO BE A PART OF
THEIR LIVES AND TO HAVE LEARNED
FROM THEM.
I'M ALSO VERY GRATEFUL TO THE
ENTIRE AAC COMMUNITY AT PENN
STATE.
WORK WOULDN'T HAVE BEEN POSSIBLE
WITHOUT THEM AND OF COURSE VERY
GRATEFUL FOR THE FUNDING SUPPORT
WE HAVE HAD FROM THE FEDERAL
GOVERNMENT.
SO, IT'S HARD TO BELIEVE A FEW
MORE GRAY HAIRS.
IT'S BEEN MORE THAN 10 YEARS
SINCE WE LAST MET AROUND THIS
TOPIC.
SO WHAT HAVE WE LEARNED SO FAR
RELATIVE TO AAC INTERVENTIONS?
WE HAVE A RAPIDLY INCREASING
BODY OF RESEARCH THAT
DEMONSTRATES THAT AAC
INTERVENTIONS CAN ENHANCE
LANGUAGE DEVELOPMENT NOT JUST
EXPRESSION BUT ALSO
COMPREHENSION.
THAT THEY CAN INCREASE
COMMUNICATION EFFECTIVENESS,
SUPPORT PARTICIPATION IN A WIDE
RANGE OF MEANINGFUL ACTIVITIES.
AND ALLEVIATE FRUSTRATION AND
THEREFORE DECREASE CHALLENGING
BEHAVIOR WHEN PEOPLE DON'T HAVE
ACCESS TO COMMUNICATION.
AND THE GOOD NEWS IS, AS CONNIE
INDICATED, THAT ALL OF THESE
BENEFITS COME WITH NO RISK TO
SPEECH DEVELOPMENT.
SO WE HAVE AN INCREASING BODY OF
LITERATURES DEMONSTRATING THAT
AAC DOES NOT INHIBIT SPEECH
PRODUCTION.
IN FACT, IT SEEMS TO ENHANCE
SPEECH DEVELOPMENT.
SO OF COURSE, UNFORTUNATELY,
THESE BENEFITS ARE ALL
PREDICATEOD HAVING ACCESS TO AAC
INTERVENTION.
SUFFICIENT INTENSITY TO ATTAIN
THESE MEANINGFUL GAINS.
IT'S REALLY DISTURBING NOT
SURPRISING PERHAPS, BUT
DISTURBING TO FIND THE RESULTS
OF A STUDY LED BY ONE OF MY
DOCTORAL STUDENTS, LAURA MARIE
POPE, WHO FOUND THAT BLACK
CHILDREN RECEIVE SUBSTANCE ALLEY
LESS AAC INTERVENTION THAN THEIR
WHITE PIERCE.
AND THE MAJORITY OF BLACK
CHILDREN ARE RECEIVING LESS THAN
60 MINUTES OF AAC INTERVENTION
PER WEEK.
AND THEY ARE NOT REFERRING TO
ONE-ON-ONE INTERVENTION WITH A
SPEECH-LANGUAGE PATHOLOGIST BUT
ANY KIND OF AAC INTERVENTION.
AND THESE ARE SIMPLY NOT
SUFFICIENT AMOUNTS OF
INTERVENTION TO ATTAIN
MEANINGFUL GAINS.
SO WE HAVE MANY CHILDREN WHO
SIMPLY ARE NOT HAVING THE
OPPORTUNITY TO BENEFIT.
EVEN WHEN CHILDREN HAVE ACCESS
TO AAC INTERVENTIONS,
UNFORTUNATELY, MANY OF THOSE
INTERVENTIONS FOCUS ON TEACHING
SIMPLE REQUESTS.
AND AS ONE MOM SAID TO ME, THERE
IS MORE TO LIFE THAN COOKIES.
SO WE NEED TO BE RAISING THE BAR
AND TARGETING AND DEVELOPING
BETTER AAC INTERVENTIONS THAT
SUPPORT INDEPENDENT
COMMUNICATION, NOT JUST TO
EXPRESS NEEDS AND WANTS BUT TO
SUPPORT SOCIAL INTERACTION, TO
SUPPORT THE SHARING OF
INFORMATION AND EXPERIENCES.
WE NEED AAC INTERVENTIONS THAT
SUPPORT THE DEVELOPMENT NOT JUST
OF A COUPLE OF WORDS TO MAKE
REQUESTS, BUT RATHER THE
DEVELOPMENT OF GENITIVE LANGUAGE
TO SUPPORT FULL COMMUNICATION.
ONE OF THE CHALLENGES IN THAT
PROCESS IS ACCESS TO AAC.
AND AS ONE OF THE MOMS INDICATED
EARLIER, AAC INVOLVES A WIDE
ARRAY OF STRATEGIES AND
TECHNIQUES AND WE NEED TO MAKE
USE OF ALL OF THESE TOOLS.
THERE IS THE MYTH SOMETIMES IN
THE AREA OF AUTISM THAT AAC
EQUALS PRO LOCO TO GO ON AN
IPAD.
BUT IN FACT THERE IS A WIDE
RANGE OF STRATEGIES AND
TECHNIQUES THAT CAN BE USED.
AND AAC TECHNOLOGY SPECIFICALLY
FOR MANY INDIVIDUALS OFFER
POTENTIALLY POWERFUL TOOLS.
BUT, MOST AAC TECHNOLOGIES HAVE
BEEN DEVELOPED BY NEUROTYPICAL
ADULTS AND THEY ARE NOT RESEARCH
BASED.
THEY BASICICALLY REPRESENT
SOMEBODY'S IDEAS OF WHAT SHOULD
WORK.
BUT THEY DO NOT REFLECT WHAT WE
KNOW ABOUT HOW PEOPLE PROCESS
INFORMATION VISUALLY,
COGNITIVELY, LINGUISTICALLY AND
MOTORICALLY.
AND AS A RESULT, ESPECIALLY FOR
BEGINNING COMMUNICATORS, THEY
CAN BE CHALLENGING TO LEARN AND
USE.
THAT CAN HOLD BACK LANGUAGE
DEVELOPMENT.
NOT BECAUSE OF THE
CHARACTERISTICS OF THE
INDIVIDUAL BUT BECAUSE OF THE
WAY THAT THE AAC TECHNOLOGIES
HAVE BEEN DESIGNED.
THESE SYSTEMS ARE OFTEN TREATED
AS IMMUTABLE BUT WE CAN DO
ANYTHING WE WANT WITH TECHNOLOGY
AS JOHN INDICATED AND WE HAVE
NOT YET TAPPED THE POTENTIAL
THAT IS AVAILABLE TO US.
WE NEED A NEW GENERATION OF AAC
TECHNOLOGIES, ONE THAT TRULY IS
DRIVEN BY THE NEEDS AND SKILLS
OF THE END USERS THAT IS
RESEARCH BASED AND HARNESSES THE
POWER OF TECHNOLOGY.
SO I'M JUST GOING TO GIVE YOU
ONE QUICK EXAMPLE OF SOME OF THE
PROBLEMS WITH CURRENT AAC
TECHNOLOGIES AND THEN GET PEOPLE
THINKING ABOUT NEW SOLUTIONS.
I DEFINITELY DON'T HAVE THE
ANSWERS BUT I THINK I KNOW WHERE
WE SHOULD BE STARTING TO THINK
ABOUT THESE PROBLEMS.
SO MANY AAC SYSTEMS USE
GRID-BASED DISPLAYS AND THESE
TAKE LANGUAGE OUT OF CONTEXT AND
DISTORT ALL THE FUNCTIONAL AND
PROPORTIONAL RELATIONSHIPS
BETWEEN PEOPLE AND ACTIONS AND
OBJECTS AND THEREFORE THEY ARE
DIFFICULT TO LEARN.
BUT WHAT IF INSTEAD WE TRY TO
CAPTURE THE EXPERIENCES IN WHICH
KIDS LEARN LANGUAGE USING PHOTOS
OR VIDEOS OF MEANINGFUL EVENTS?
AND WE EMBED EARLY EMERGING
LANGUAGE CONCEPTS WITHIN THOSE
SCENES OR PHOTOS?
SO HERE WE HAVE MOM EMBEDDED
WITHIN THE SCENE AND TALKING AND
THE TELEPHONE.
FROM OUR RESEARCH, THE USE OF
THE DISPLACE AND VIDEOS OFFER
SIGNIFICANT ADVANTAGES.
THESE ARE PROCESSED VISUALLY
VERY RAPIDLY, MUCH MORE RAPIDLY
THAN GRID DISPLAYS AND MOREOVER
OUR RESEARCH WOULD SUGGEST THAT
VISUAL ATTENTION IS DRIVEN
TOWARDS THE KEY LANGUAGE
CONCEPTS THAT EMERGE EARLY ON.
THE PEOPLE, THE ACTIONS AND THE
SHARED ACTIVITY.
MOREOVER, THEY ALLOW JUST IN
TIME PROGRAMMING OR ADDITION OF
VOCABULARY ON THE FLY SO WE CAN
BE RESPONSESSIVE TO THE
INTERESTS OF THE INDIVIDUAL AND
THEY CAN BE EMPOWERED TO CONTROL
SOME OF THEIR VOCABULARY
ACQUISITION.
SO VSDs, OTHER APPLICATIONS OF
TECHNOLOGY SUPPORT INCREASED
COMMUNICATION, VOCABULARY
ACQUISITION EXPRESSION.
THEY CAN SERVE AS TOOLS FROM OUR
RESEARCH, TO JUMPSTART LANGUAGE
DEVELOPMENT AT VERY EARLY
STAGES.
9 MONTHS OF AGE.
12 MONTHS OF AGE.
SO THAT INDIVIDUALS CAN KEEP
PACE WITH THEIR LANGUAGE
DEVELOPMENT AND NOT BE HELD
BACK.
BUT NOTE THAT I SAY THAT THESE
ARE WAYS TO JUMPSTART EARLY
LANGUAGE DEVELOPMENT.
THEY ARE NOT SUFFICIENT TO
DEVELOP GENITIVE COMMUNICATION.
FOR THAT, YOU NEED ACCESS TO
SYNTAX AND MORPHOLOGY AND FULLY
ROBUST LANGUAGE SYSTEM SYSTEM.
AND REALLY THE ONLY WAY TO GET
TO THAT IS THROUGH LITERACY.
CONNIE INDICATED WE NEED TO BE
LOOKING AT BOLSTERING LITERACY
OUTCOMES FOR THIS POPULATION.
THESE LITERACY SKILLS ARE
ESSENTIAL TO PARTICIPATION AND
SOCIETY FOR ALL OF US BUT
ESPECIALLY FOR INDIVIDUALS WHO
DON'T HAVE ACCESS TO SPEECH.
THROUGH LITERACY THEY ARE ABLE
TO EXPRESS THEMSELVES FULLY AND
INDEPENDENTLY.
SO IT'S AGAIN A REALLY
CONCERNING TO KNOW THAT THE
RESEARCH SUGGESTS THAT MORE THAN
90% OF INDIVIDUALS WHO HAVE
COMPLEX COMMUNICATION NEEDS
ENTER ADULTHOOD WITHOUT
FUNCTIONAL LITERACY SKILLS.
WE HAVE BEEN WORKING ON WAYS TO
CHANGE THAT WITHIN OUR LAB AT
PENN STATE.
DAVID AND I HAVE BEEN WORKING
OVER THE LAST 10 YEARS ON
DEVELOPING ADAPTIVE LITERACY
CURRICULUM TO SUPPORT
INDIVIDUALS WHO CANNOT RELY ON
SPEECH TO LEARN TO READ AND
WRITE.
IT IS HEAVILY RELIANT ON WHAT WE
KNOW ABOUT HOW LITERACY SKILLS
DEVELOP, TARGETING APPROPRIATE
SKILLS, UTILIZING EFFECTIVE AND
INSTRUCTIONAL PROCEDURES.
BUT ADDING ADD DAPITATIONS TO
ALLOW INDIVIDUALS WITH COMPLEX
COMMUNICATION NEEDS TO
PARTICIPATE USING ALTERNATIVE
RESPONSE MODES, VISUAL SUPPORTS
AND PROVIDING SUPPORT FOR THAT
RECODING FROM TEXT TO SPEECH
THAT MAY BE MORE DIFFICULT FOR
THOSE INDIVIDUALS WHO DON'T
SPEAK.
WE ALSO HAVE BEEN WORKING HARD
TO MAKE SURE THAT WE EMBED
SUPPORTS FOR LITERACY LEARNING
INTO THE PICTURE-BASE
COMMUNICATION SYSTEMS OFTEN USED
BY INDIVIDUALS WHO HAVE LIMITED
SPEECH.
WE CALL THESE TRANSITION TO
LITERACY TECHNOLOGY, ESSENTIALLY
WHAT HAPPENS IN THIS IS THAT THE
INDIVIDUAL SELECTS EITHER FROM A
VISUAL SCREEN DISPLAY OR GRID
DISPLAY.
A SYMBOL OR A PICTURE AND AT
THAT POINT, THE WRITTEN WORD
APPEARS DYNAMICALLY ON THE
SCREEN.
THAT MOTION CAPTURES VISUAL
ATTENTION IN A REALLY POWERFUL
WAY SO THAT THE USER IS
ATTENDING TO THE ORTHOG FEE OR
WRITTEN TEXT.
WITH THAT VISUAL ATTENTION TO
THE TEXT WE PAIR IT WITH THE
SPOKEN OUTPUT, EITHER OF THE
FULL WORD TO SUPPORT SIGHT WORD
LEARNING OR ALTERNATIVELY WITH A
SOUNDING OUT OF THE WORD TO
SUPPORT THE LEARNING OF DECODING
SKILLS.
>> DR. COOPER: YOUR TIME IS
ALMOST UP.
>> JANICE LIGHT: I'M ALMOST
THERE.
WE HAVE DONE A SERIES OF SINGLE
CASE RESEARCH STUDIES AND
RESULTS OF THOSE, WORK LED BY
JESSICA KAREN, FOUND THAT 89% OF
THE PARTICIPANTS INCREASED THEIR
LITERACY SKILLS SIMPLY WITH
ACCESS TO THESE AAC APPS.
SO I BELIEVE WE CAN DO BETTER
THAN WE HAVE.
AND THE FUTURE IS EXCITING TO
ME.
A COUPLE OF REALLY QUICK
RESEARCH PRIORITIES, WE URGENTLY
NEED RESEARCH TRAINING AND
POLICY MAKING TO OPTIMIZE OUR
SERVICES TO CLOSE THAT GAP
BETWEEN WHAT WE KNOW IS POSSIBLE
AND WHAT IS ACTUALLY OCCURRING
IN THE LIVES OF THESE KIDS.
TO ADDRESS THOSE RACIAL
DISPARITIES AND ENSURE THAT ALL
KIDS AT RISK RECEIVE ACCESS TO
AAC INTERVENTION.
AT A VERY EARLY STAGE AND THAT
THAT INTERVENTION IS SUFFICIENT
INTENSITY TO ACHIEVE MEANINGFUL
GAINS.
WE NEED RESEARCH TO DETERMINE
WHICH AAC INTERVENTIONS WORK
BEST FOR WHOM UNDER WHAT
CONDITIONS.
NOT JUST FOR SIMPLE REQUESTS BUT
TO MAXIMIZE LANGUAGE LITERACY
AND COMMUNICATION.
AND WE URGENTLY NEED TECHNOLOGY
DEVELOPMENT.
RESEARCH-BASED TECHNOLOGIES
DRIVEN BY THE NEEDS AND SKILLS
OF END USERS.
AND I AGREE WITH THE EARLIER
SPEAKERS.
THIS WORK WILL ONLY BE EFFECTIVE
IF OUR FUTURE RESEARCH
DEVELOPMENT TRAINING AND
DISSEMINATION ENTAILS
PARTNERSHIPS BETWEEN INDIVIDUALS
ON THE AUTISM SPECTRUM,
RESEARCHERS AND SERVICE
PROVIDERS WITH EXPERTISE IN
AUTISM AND ALSO RESEARCHERS
SERVICE PROVIDERS AND TECHNOLOGY
DEVELOPERS WITH EXPERTISE IN
AAC.
THANK YOU.
>> CONNIE KASARI: THAT WAS
GREAT.
THANK YOU.
NEXT WE HAVE KAREN CHENAUSKY.
SPEECH THERAPY FOR MINIMALLY
VERBAL AUTISTIC CHILDREN.
WHERE ARE WE?
[ LOW AUDIO ]
>> KAREN CHENAUSKY: IS MY
PRESENTATION SHOWING?
LET ME KNOW.
>> YES.
>> KAREN CHENAUSKY: SUCCESS.
FIRST OF ALL, CONNIE, THANKS TO
UL YOU AND HELEN AND JUDITH FOR
THIS HONOR.
AND YOU KNOW I'M GOING TO TALK
ABOUT SPEECH THERAPY, THE
SCIENCE BEHIND THE SPEECH
THERAPY FOR MINIMALLY VERBAL
AUTISTIC CHILDREN.
BUT I WANT TO BEGIN BY PUTTING
MY PRESENTATION AND MY WORK IN
GENERAL IN CONTEXT.
WE ARE ALL FAMILIAR WITH THE
PROPORTION OF AUTISTIC CHILDREN
WHO REMAIN MINIMALLY VERBAL PAST
THE AGE OF 5.
AND THE DEEP DISTRESSING
BEHAVIORS LIKE SELF INJURY AND
AGGRESSION THAT ARE ASSOCIATED
WITH BEING MINIMALLY VERBAL.
I BELIEVE THAT EVERYONE HAS THE
RIGHT TO COMMUNICATE IN WAYS
THAT DO NOT INVOLVE HURTING
THEMSELVES OR OTHERS.
AS A RESEARCHER, I ACKNOWLEDGE
THAT SPEECH WINS THE POPULARITY
CONTEST AND THE LARGE MAJORITY
OF PEOPLE COMMUNICATE BY SPEECH.
BUT THAT DOESN'T MEAN THAT
SPEECH IS MORALLY SUPERIOR TO
OTHER MODES OF COMMUNICATION
SUCH AS TEXT OR TEXTING OR SIGN
OR GESTURE.
AND I BELIEVE THAT IT IS OUR
RESPONSIBILITY AS CLINICIANS TO
PROVIDE THE CHILDREN WE WORK
WITH THE TOOLS TO COMMUNICATE IN
THE SAME VARIETY OF WAYS THAT WE
OURSELVES COMMUNICATE IN WHILE
ACKNOWLEDGING THEIR AGENCY AND
POTENTIALLY PREFERRING SOME
MODES OVER OTHERS.
SO AS MUCH SPEECH DOES HAVE
ADVANTAGES AS A MODE OF
COMMUNICATION SUCH AS MAXIMUM
NUMBER OF CONVERSATION PARTNERS,
BUT IT'S NOT EVERYONE'S TOP
CHOICE.
IT IS A COMPLEX SET OF SKILLS
AND THERE ARE MANY LEVELS AT
WHICH SPEECH DEVELOPMENT CAN BE
AFFECTING.
I WON'T GO INTO ALL OF THEM BUT
I WILL FOCUS ON THE PLANNING AND
PROGRAMMING LEVEL BECAUSE
DISORDERS THAT THE LEVEL SEEM TO
HAVE, ESPECIALLY WIDE RANGING
EFFECTS ON EXPRESSIVE LANGUAGE
DEVELOPMENT THAN DO DISORDERS AT
SOME OTHER LEVELS.
SPECIFICALLY AS HELEN ALLUDED
TO, I'M TALKING ABOUT CAS,
CHILDHOOD A PACKSIA OF SPEECH.
THIS IS A DISORDER AFFECTING THE
PLANNING OF THE MOVEMENTS NEEDED
FOR SPEECH.
KIST RIDES BROADLY BY DISRUPTED
COARTICULATION BETWEEN ADJACENT
SPEECH SOUNDS, BILLETEDDERED
TIMING OF SPEECH AND BY VARIABLE
OR INCONSISTENT ERRORS.
TREATMENT FOR CAS IS LENGTHY AND
INTENSIVE.
IT INVOLVES TEACHING CHILDREN
FIRST TO PRODUCE AND THEN TO
REFINE THE MOTOR PATTERNS NEEDED
FOR INTELIGIBLE SPEECH WITH THE
GOALS OF INCREASING SMOOTH
THINKS, CONSISTENCY AND
THEREFORE SPEECH
INTELLIGIBILITY.
BUT IT DOESN'T END THERE.
BECAUSE CHILDREN WITH CAS ALSO
FREQUENTLY EXPERIENCE CHALLENGES
WITH ORAL LANGUAGE LATER ON.
FOR EXAMPLE, IN A FOURTH COMING
PAPER I HAVE WITH COLLABORATORS
AT THE MAYO CLINIC, WE FOUND
THAT OF A COHORT OF 375 CHILDREN
WHERE A PRIMARY DIAGNOSIS OF
CAS, OVER 95 EXPRESS EXPRESSIVE
LANGUAGE IMPAIRMENTS.
OTHER WORK I DID WITH HELEN, IN
OUR COLLABORATOR, AMANDA AND
ANGELA MORGAN, SHOWN THAT CAS
DOES AFFECT A CONSIDERABLE OF
MINIMALLY VERBAL CHILDREN AS
WELL.
WE DON'T KNOW THE EXACT PORTION
BECAUSE WE CAN'T DIAGNOSE CAS IN
PEOPLE WHO DON'T SPEAK OR WHO
HAVE VERY, VERY LITTLE SPEECH.
THOUGH IT IS A REASONABLE
HYPOTHESIS THAT CAS COULD BE SO
SEVERE AS TO LIMIT INTENTIONAL
VOCALIZATION ENTIRELY.
REGARDLESS, CAS DOES APPEAR TO
SIGNIFICANTLY NEGATIVELY EFFECT
CHILDREN'S ABILITY TO PRODUCE
ACCURATE SPEECH AS SHOWN BY THIS
GRAPH WHERE THE ONLY ADJACENT
GROUPS TO SIGNIFICANTLY DIFFER
ON SPEECH REPETITION ABILITY
WITH THE NON CAS AND CAS GROUPS.
SO ALONG WITH RECEPTIVE LANGUAGE
IMPAIRMENT, CAS DOES SEEM TO BE
ONE FACTOR THAT MAKES SOME
MINIMALLY VERBAL CHILDREN
MINIMALLY VERBAL.
SO AS TO THE SCIENCE ON
TREATMENT FOR CAS AND AUTISTIC
CHILDREN.
THERE IS LITERALLY JUST TWO SETS
OF STUDIES.
AND RESULTS ARE MIXED.
THE FIRST I'LL DESCRIBE IS
MOLLY'S WORK WHICH SHE DID FOR
HER DISSERTATION AT TEMPLE
UNIVERSITY.
SHE REPORTS ON THREE CHILDREN
WITH BOTH AUTISM AND CAS.
AND THE PARADIGM WAS TO PROVIDE
18 SESSIONS OF CAS THERAPY,
WHICH IS BASED ON PRINCIPLES OF
MOTOR LEARNING AND INVOLVES A
LOT OF INTENSIVE PRACTICE.
SHE ALSO INCLUDED PLAYING VIDEO
MODELING TECHNIQUES IN HER
STUDY.
THE RESULTS HERE, THOUGH,
UNDERSCORE REALLY HOW
CHALLENGING TALKING IS FOR THESE
CHILDREN IN THE FACT THAT TWO OF
THE PARTICIPANTS DIDN'T FINISH
THE THERAPY.
AND THERE WERE AGAIN VERY MIXED
RESULTS.
BUT I THINK THE FACT THAT SOME
IMPROVEMENT OCCURRED ON SOME
STIMULI FOR MOST PARTICIPANTS,
IS IT TESTAMENT TO HER CLINICAL
SKILL AND FRANKLY HOW HARD THE
CHILDREN WORKED.
THE OTHER SET OF STUDIES IS ONE
I HAD THE PRIVILEGE OF WORKING
ON.
I'M GOING TO REPORT AGGREGATE
RESULTS OVER A TOTAL OF 31
CHILDREN WHO RECEIVED 25
SESSIONS OF AMMT, AUDITORY MOTOR
MAPPING TRAINING.
THIS IS A MUSIC-BASED TRAINING
WHERE STIMULI ARE SUNG INSTEAD
OF SPOKING AND REPETITION IS
ACCOMPANIED BY MANUAL DRUMMING
IN TIME WITH EACH SYLLABLE.
OVER ALL 31 CHILDREN THERE WAS A
SIGNIFICANT MEAN IMPROVEMENT OF
ABOUT 16% ON OUR MAIN OUTCOME
MEASURE, A MEASURE OF SYLLABLE
REPETITION ACCURACY.
BUT AS WITH MOLLY'S WORK, THIS
AVERAGE REALLY ENCOMPASSES A
WIDE RANGE OF INDIVIDUALS
PERFORMANCE.
THE CHILDREN WHO IMPROVE ARE
SHOWN IN DARK BLUE WHILE THE
LIGHT ORANGE ONES REPRESENT
CHILDREN WHO DIDN'T IMPROVE.
SO TO UNDERSTAND BETTER WHAT
PREDICTED THAT IMPROVEMENT, WE
WERE ABLE TO IDENTIFY TWO MAIN
FACTORS THAT WERE RESPONSIBLE
FOR IMPROVEMENT.
ONE IS SPEECH ABILITY AT
BASELINE.
NOT SURPRISINGLY FOR
SPEECH-RELATED THERAPY.
BUT THE OTHER WAS OLDER AGE.
AND I THINK THESE FACTORS RAISE
IMPORTANT QUESTIONS ABOUT WHO
THIS TYPE OF THERAPY MIGHT BE
MOST USEFUL FOR.
AND IN LINE WITH THAT QUESTION,
I'LL BRIEFLY PRESENT SOME
EXCITING RECENT WORK FROM
ARIZONA STATE UNIVERSITY.
THIS GROUP IS LED BY -- THEY
LOOKED AT CHILDREN WITH
LACTSEMIA, A GENETIC METABOLIC
DISORDER ASSOCIATED WITH CAS IN
LATER CHILDHOOD.
AND SINCE GALACTOSEMIA CAN BE
DIAGNOSED VERY SOON AFTER BIRTH,
THIS TEAM ENROLLED CHILDREN WITH
THAT DIAGNOSIS BEFORE THEY WERE
6-MONTH-OLD.
AND THEY PROVIDED THEM WITH A
PARENT MEDIATED THERAPY THAT
BEGAN WITH ACTIVITIES DESIGNED
TO INCREASE BOTH THE AMOUNT AND
THE COMPLEXITY OF BABBLING
STAYING WITHIN PROXIMAL
DEVELOPMENT ZONE AND MOVING ON
TO INCREASING VOCABULARY AND
LANGUAGE COMPLEXITY LATER ON AS
CHILDREN DEVELOPED.
BY 10-12 MONTHS OF AGE, THE
TREATED GROUP SHOWED
SIGNIFICANTLY GREATER BABBLING
COMPLEXITY THAN BOTH THE
UNTREATED GROUP AND UNAFFECTED
CONTROLS.
AND FURTHERMORE, AT A 54 MONTH
FOLLOW-UP, ONLY ONE OF THE 13
TREATED CHILDREN WHO STAYED IN
THE STUDY THAT LONG, SCORED MORE
THAN ONE ENVELOPE STANDARD
DEVIATIONS BELOW THE MEAN ON
EITHER ARTICULATION OR
EXPRESSIVE LANGUAGE TEST.
WHILE 3 OF THE 6 UNTREATED
CHILDREN DID.
SO ALONG WITH OUR PREVIOUS
FINDINGS OF AGE RELATED
DIFFERENCINGS IN RESPONSE TO
AAMT, I THINK THE STUDY REALLY
SUGGESTS THAT THE TIMING OF
TREATMENT AS WELL AS ITS CONTENT
MAY MATTER A LOT FOR EFFICACY.
OF COURSE IT'S ALSO POSSIBLE
THAT EMBEDDING CAS SPEECH
TREATMENT IN A MILIEU DESIGNED
TO MAKE IT MORE ENJOYABLE FOR
CHILDREN AND PROMOTE
GENERALIZATION RATHER THAN JUST
FOCUSING ON DRILLS, MAY ALSO
IMPROVE OUTCOMES.
AND THAT IS WHAT WE ARE LOOKING
AT IN OUR LAB.
SO I THINK THIS LEAVES US WITH
THE FOLLOWING SET OF QUESTIONS.
FIRST, HOW CAN WE IDENTIFY
AUTISTIC CHILDREN WHO ARE AT
RISK OF BEING MINIMALLY VERBAL
OR NON-SPEAKING EARLIER THAN WE
CURRENTLY DO?
COULD IT BE THAT IF EARLY
BABBLING INTERVENTION IS
EFFECTIVE FOR THESE CHILDREN?
RELATEDLY, WHAT IS THE OPTIMAL
TIMING AND DOSAGE AND TYPE OF
SPEECH TREATMENT FOR MINIMALLY
VERBAL AUTIST IRK CHILDREN?
AND THEN FINALLY, LAST BUT
DEFINITELY NOT LEAST, HOW CAN WE
SUPPORT EFFECTIVE COMMUNICATION
IN NON-SPEAKING AUTISTIC
CHILDREN AS WELL.
AND I HOPE THAT BY PUTTING THE
BEST MINDS ON THESE QUESTIONS
WITH THE IMPROVING AUDIENCE, AND
SUPPORTING FUTURE BEHAVIORAL AND
TREATMENT STUDIES THAT WE'LL BE
ABLE TO COME UP WITH SOME GOOD
ANSWERS.
THANK YOU.
>> THANK YOU, KAREN.
NEXT WE ARE MOVING RIGHT ALONG
TO CATHY.
DO YOU WANT TO TURN ON YOUR
CAMERA?
WE'LL HEAR ABOUT PEER-MEDIATED
INTERVENTIONS WITH CHILDREN WITH
AUTISM, NOVEL AAC APPROACH THAT
IS WORK IN NATURAL ENVIRONMENTS.
>> HI, EVERYBODY.
CAN YOU HEAR ME OKAY?
>> YES.
>> OKAY.
I AM GOING TO SHARE SOUND.
I DO HAVE A FEW VIDEOS THAT
HOPEFULLY -- WORK.
THANK YOU VERY MUCH FOR THIS
OPPORTUNITY TO BE HERE.
I'M ENJOYING THIS TIME AND IT'S
REALLY NICE TO LOOK AT THE BIG
PICTURE AND OUTSIDE OF MY LITTLE
OFFICE AND SCHOOL AND STAFF JUST
TO SEE WHAT IS GOING ON OUT
THERE.
SO THANK YOU AGAIN FOR THE
OPPORTUNITY.
THIS IS A TOPIC THAT IS VERY
DEAR TO ME.
IT'S ALL I HAVE BEEN DOING SINCE
I GRADUATE FRIDAY FLORIDA STATE
OVER 20 YEARS AGO.
AND WHAT I'M GOING TO TALK ABOUT
ARE APPROACH THAT IS WORK IN
NATURALISTIC ENVIRONMENTS WHERE
WE INCORPORATE AUGUST MENNATIVE
COMMUNICATION INTO PEER MEDIATED
INTERVENTIONS.
AND LEARNING FROM OUR PAST.
THIS WORK HAS ACTUALLY BEEN
GOING ON FOR OVER 50 YEARS NOW.
AND SAM ODOM AND HOWARD
GOLDSTEIN, WHO WAS MY MENTOR OR
STILL IS, BEGAN THIS IN THE MID
70s FOCUSING ON THE INITIATION
STRATEGIES, SPECIFICALLY, AND
HOW WE CAN PROMPT AND REINFORCE
CHILDREN TO INCREASE THEIR
INTERACTIONS IN THE PRESCHOOL
CLASSROOMS.
AND THEN IT MOVED TO THE 1980S
AND 1990S WHERE NOW THEY WERE
THINKING WE SHOULD REDUCE SOME
OF THESE PROMPTS BECAUSE THE
CHILDREN WERE NOT GENERALIZING
THE SKILLS.
AND THEN VISUAL AIDS STARTING
COMING INTO THE INTERVENTION
COMPONENTS.
AND THE FOCUS MORE ON
COMMUNICATIVE INTERACTION SO
THAT BACK-AND-FORTH.
AND ALSO WHAT WERE THE EFFECTS
ON THE PEERS?
SO FIRST IT WAS FOCUSED
PRIMARILY ON AUTISM AND THEN IT
MOVED TO HOW IT APPEARS IN THIS.
ARE THEY DEVELOPING SKILLS?
AND THEN NOW, AND WHERE I
STARTED IN THIS FIELD WAS EARLY
2000 FOCUSING MORE ON MINIMALLY
VERBAL AND NON-SPEAKING
INDIVIDUALS.
INTEGRATING LOW AND HIGH-TECH
AAC.
SO WHEN I FIRST STARTED WE
WERE -- THE iPAD WAS NOT A
THING.
COMMUNICATION WAS BEGINNING TO
BECOME MORE POPULAR BUT REALLY
WE WERE USING WRITTEN TEXT CUES.
ANYTHING VISUAL THAT YOU WOULD
WRITE DOWN ON TOPIC CARDS OR USE
PLACE MATS.
THERE WAS A NUMBER OF DIFFERENT
VISUAL QUEUES.
BUT AS RECENTLY AS 2021, DONAHUE
DID A REVIEW OF ALL OF THE AAC
INTERVENTIONS AND THERE WERE A
TOTAL OF LIKE 25 STUDIES.
54 INDIVIDUALS.
SO WE STILL HAVE A LONG WAY TO
GO.
12 OF THOSE WERE IN PRESCHOOL,
10 IN ELEMENTARY SCHOOL AND
THREE WERE IN HIGH SCHOOL.
AND THAT'S THE MOST RECENT
REVIEW I CAN FIND THAT
SUMMARIZED PEER MEDIATED
INTERVENTIONS FOR INDIVIDUALS
THAT MAY BE REQUIRING AAC.
SO WE MADE SOME PROGRESS BUT
THERE IS MORE PROGRESS TO BE
MADE.
AND I THINK THE PRIMARY PURPOSE
OR WHY I AM REALLY INTERESTED IN
THIS IS I FEEL LIKE WHEN YOU
OBSERVE THE CHILDREN AT
BASELINE, WE HAVE FEEDBACK FROM
TEACHERS SAYING, THEY ARE NOT
CAPABLE OF THAT AND THERE IS
OTHER PRECURSOR SKILLS THEY
MIGHT NEED BEFORE WE START
WORKING ON PLAYING ON THE
PLAYGROUND OR OTHER SKILLS.
AND IN MY EXPERIENCE, BASELINE
IS OFTEN IS LIMITED OR NOT A LOT
GOING ON.
AND SO THAT'S WHERE WE ARE
STARTING WITH, I WORKED IN
ELEMENTARY SCHOOL, MIDDLE
SCHOOL.
THERE IS NOT A LOT HAPPENING IN
TERMS OF COMMUNICATION.
SO, HOW DO WE HELP THAT?
AND HOW DO WE GET TO THE POINTED
WHERE THESE APPROACHES ARE BEING
IMPLEMENTED IN THE CLASSROOMS IN
THE NATURALISTIC SAYINGS?
THAT'S THE GOAL OF THE RESEARCH
WE DO.
AND IN ONE PROJECT WHERE IT WAS
ONE OF THE FIRST ONES WE IF
SCALE IT UP, THERE WAS SOME
MINIMALLY VERBAL CHILDREN IN
THIS GROUP BUT WE HAD 56
CHILDREN IN THE INTERVENTION
NETWORK AND THEN 36 IN THE
BUSINESS COMPARISON GROUP.
AND THIS WAS WITH EILEEN AT U
DUB AND OTHERS.
AND WE WERE ABLE TO INCREASE THE
SOCIAL INITIATIONS IN A
STRUCTURE DIE ADD OR TRIAD AND
ALSO IN NATURALISTIC SETTINGS.
WE FOUND INCREASES IN LANGUAGE
AND ADAPTIVE SKILLS AND HAD A
TEACHER OF SOCIAL IMPRESSION
SKILLS.
BUT WHAT WE FOUND WAS THAT THE
NOTABLE OUTCOMES WAS FROM THE
MIDDLE OF KINDERGARTEN TO THE
END OF FIRST GRADE.
SO THERE WASN'T AS SIGNIFICANT
CHANGES IN THAT FIRST SEMESTER
BUT IF YOU LOOKED AT THEIR
CHANGES ACROSS FIRST GRADE, THEY
WERE MUCH MORE NOTABLE.
AND SO THE TIME IS SO IMPORTANT
WITH THAT AGE GROUP.
AND WE OFTEN DON'T SEE CHANGES
IN THAT FIRST 6 MONTH OR YEAR
BUT OUR INTERVENTIONS AND
STUDIES ARE GENERALLY ONE SCHOOL
YEAR LONG.
SO, I THINK MOVING FORWARD IN UT
TOOURE RESEARCH, I KNOW IT'S
VERY EXPENSIVE TO DO THIS TYPE
OF RESEARCH, BUT WE SAW THE MOST
GAINS IN THIS AGE GROUP IN THE
SECOND YEAR.
THE PRIMARY TREATMENT COMPONENTS
SETTING UP THE ENVIRONMENT.
SO LOOKING AT CHILD PREFERENCES.
WE HAVE TO GET THEIR ATTENTION
AND ENGAGED AND MOTIVATED TO
WANT TO BE AT THE TABLE WITH
THEIR PEERS.
WE PROVIDE A LOT FUN 50s
GAMES, COMMUNICATION
OPPORTUNITIES.
BACK IN THIS PROJECT WE DID
WRITTEN TEXT AND GRAPHIC CUES
BUT NOW I'M SURE WE
INTEGRATEITOSE INTO AUGUST
MENNATIVE SYSTEMS BECAUSE THEY
ARE SO MUCH MORE POPULAR AND
AVAILABLE TO STUDENTS.
THESE ARE THE SKILLS THAT WE
TAUGHT THEM.
SO WE HAVE A LOT OF VISUAL
QUEUES THAT GO ALONG WITH THESE
BUT BASICALLY TEACHING THE PEERS
HOW TO MODEL AND USE THESE
SKILLS AND WE ARE ALSO TEACHING
THE CHILDREN WITH AUTISM HOW TO
USE THESE SKILLS.
THE NEXT PROJECT THAT WE ARE
INVOLVED IN THAT WAS A
RANDOMIZED CONTROL TRIAL, AN RO1
FUNDED THROUGH NIDCD.
WITH THIS ONE IT WAS ALL
CHILDREN WHO ARE MINIMALLY
VERBAL OR NOT SPEAKING YET AND
WE WERE ABLE TO PROVIDE A PEER
MEDIATED INTERVENTION THAT
INCLUDED AN iPAD.
IF THE CHILD WAS ALREADY USING A
SYSTEM ON THE iPAD, WE WOULD
USE THAT BUT WE LANDED ON TOUCH
CHAT AND JUST FELT THAT WAS THE
MOST FEASIBLE FOR TEACHERS TO
LEARN TO USE.
AND WE HAD REALLY GOOD FEED BACK
ON IT.
BUT WHAT WE FOUND WAS WITH THIS
GROUP IS THAT CHILDREN'S
RECEPTIVE LANGUAGE AT THE START
OF THE PROJECT PREDICTED THEIR
GAINS OVER THE COURSE OF THE
INTERVENTION.
BUT THERE WAS REALLY MARKED
VARIABILITY IN THEIR
PERFORMANCE.
AND HERE IS AN EXAMPLE OF WHAT
THAT LOOKS LIKE.
AND SO YOU CAN SEE IN BASELINE
THERE IS VERY LIMITED
COMMUNICATION GOING ON AND AFTER
ABOUT EIGHT HOURS OF
INTERVENTION, AND TREATMENT, WE
INCREASED THOSE COMMUNICATION
HOURS.
THIS IS JUST BETWEEN THE
CHILDREN DID THE PIERCE BUT YOU
CAN SEE THERE IS A WIDE RANGE.
WHICH BRINGS ME TO OUR CURRENT
PROJECT RIGHT NOW.
WE ARE CURIOUS, WHAT TYPES OF
CHILD BEHAVIORS OR CHILD
CHARACTERISTICS WILL PREDICT
THEIR RESPONSE TO A
PEER-MEDIATED INTERVENTION?
WITH THAT INFORMATION PERHAPS WE
COULD MODIFIER ADAPT OR ADD
COMPONENTS TO AN INTERVENTION
FOR SPECIFIC CHILDREN BASED ON
THOSE CHARACTERISTICS.
AND SO, THE MAIN TREATMENT
COMPONENTS WE ARE LOOKING AT
HERE SETTING UP THE ENVIRONMENT,
LOOKING AT CHILD PREFERENCES,
LOCATION.
SOMETIMES WE WORK IN QUIET ROOMS
WHERE THEY CAN FOCUS.
SOMETIMES IT'S IN THE CLASSROOM.
IT DEPENDS ON THE CHILD IN THE
CLASSROOM.
AGAIN WE ARE PROVIDING A NUMBER
OF COMMUNICATION OPPORTUNITIES
IN A SHORT AMOUNT OF TIME.
WE ARE TRA INNING UP TO TWO
PEERS.
WE TEACH THEM HOW TO USING THE
iPAD SO IN SOME AREAS IT'S
CALLED AUGMENTED INPUT.
OTHER TYPES WE ARE TEACHING THEM
HOW TO USE THE SPEECH DEVICE SO
THEY CAN MODEL FOR THE CHILDREN.
iPAD ARE VERY COMMON NOW.
WE HAVE USE PECS AND WE
PUBLISHED A STUDY.
ONCE WE FOUND THE COMMUNICATION
OPPORTUNITY STARTED IT ENDED
FASTER.
SO WITH iPAD WE HAVE BEEN ABLE
TO GET MORE RECIPROCITY GOING
BACK-AND-FORTH.
AND WE ARE LOOKING AT THEIR
BEHAVIORS AND SNACKS, SMALL
GROUPS, CENTERS AND PRE-PLAY.
SO I'M CURIOUS, THIS IS ONE OF
THE QUESTIONS, DOES THE
ASSESSMENT CONTEXT MAKE A
DIFFERENCE?
I DO BELIEVE IT DOES BUT THIS IS
PART OF OUR QUESTION IN THIS
R21.
WE ARE LOOKING AT STRUCTURED
PLAY, NATURALISTIC OBSERVATIONS
AND THEN ALSO USING EYE TRACKING
MEASURES.
SO FRED AND JAMES ARE
CONSULTANTS ON THIS PROJECT.
AND I WOULD JUST WANT TO SHOW
YOU A VIDEO OF WHAT BASELINE
LOOKS LIKE IN PRE-PLAY WHICH LET
ME KNOW IF YOU CAN NOT --
>> WHAT IS THIS?
>> CAN YOU TURN IT ON?
>> YES.
[ TOY MAKING NOISE ]
>> SO, THE LITTLE GIRL WITH
AUTISM IS THE ONE ON THE LEFT
AND SO YOU CAN SEE SHE IS
ENGAGED.
AND THESE ARE THINGS WE ISSUE
MEASURING.
ARE THEY WATCHING WHAT THE PEERS
ARE DOING?
ARE THEY LOOKING AT THE MUTUAL
TOY?
SO WE ARE LOOKING AT EARLY
SOCIAL BEHAVIORSES WITH THIS
GROUP.
BUT THIS GENERALLY IS WHAT
BASELINE LOOKS LIKE.
NOT A LOT GOING ON.
SHE IS INTERESTED.
SOME KIDS ARE LIKE JACKSON
LEAVING.
HE IS A PEER.
BUT WE ARE WANTING TO LOOK AT
PRE-PLAY, AND LOOK AT SNACK.
AND SO, PART OF THIS IS
MEASURING THEIR EARLY SOCIAL
BEHAVIORS AND ALSO WANTING TO
SEE IF THERE IS THINGS WE CAN
MODIFY AND MAYBE HELP WITH THE
TEACHERS.
AND I'M ABOUT SEVEN CEMENTS.
THIS IS BASELINE AT PRE-PLAY OR
MORE OF A STRUCTURED SETTING.
[ VIDEO ]
>> MORE OF THE SAME.
YOU CAN SEE HE IS INTERESTED.
THE GUY ON THE RIGHT IS NON
VERBAL.
HE HAS WORD BASE AT 60 ON HIS
iPAD.
HE CAN MANIPULATE THROUGH
MULTIPLE SCREENS BUT DOESN'T
INTERACT WITH PEERS.
WITH ADULTS HE WILL AT HOME HE
WILL BUT NOT WITH PEERS.
THE STAY PLAY TALK WITH iPAD.
WE PROVIDE TWO 30 MINUTE PEER
TRAINING SESSIONS AND THEN IN
THIS PROJECT PROVIDING 1630
MINUTE TREATMENT SESSIONS WHERE
THEY GET-TOGETHER AND WE GUIDE
THEIR INTERACTIONS.
WE TEACH THE PEERS HOW TO PROMPT
OR HOW-TO GUIDE THE INTERACTION.
SO WE SILT BACK AND WANT TO
WATCH.
WE DON'T WANT TO BE INVOLVED.
WE WANT THE APPEAR TO BE ABLE TO
DO THAT.
AND SO THESE ARE THE BASIC STAY
PLAY TALK BUDDY STEPS.
AND THE TWO SKILLS I THINK ARE
REALLY IMPORTANT THAT WE TEACH
THE PEERS ARE HOW TO HOLD AND
WAIT.
SO SIMILAR HOW A ADULT MIGHT GET
A CHILD'S ATTENTION WE TEACH THE
PEER TO DO THAT.
THEY HOLD UP OBJECTS AND THEN
JUST WAIT.
AND THEN WE TEACH THEM, GIVE THE
TOY REALLY FAST.
AND THEN WE GET THEM TO GET
THEIR ATTENTION.
SAY THEIR NAME, TAP THEM ON THE
SHOULDER AND DO IT AGAIN.
AND THEN IF THEY ARE NOT
SUCCESSFUL, WE JUMP IN RIGHT
AWAY.
SO EVERY OPPORTUNITY THEY HAVE
IN A 10-MINUTE SESSION,
HOPEFULLY THEY HAVE ONE EVERY
MINUTE.
WE WANT THEM TO HAVE SUCCESS SO
THAT WE JUMP IN AS SOON AS IT'S
NOT SUCCESSFUL.
AND THEN WE TEACH THEM HOW TO
SHOW THE CHILD WHAT BUTTON TO
PUSH ON THE iPAD.
HERE IS AN EXAMPLE OF THE WORD
POWER 20 TOUCH CHAT WE ARE USING
USING.
THIS IS WORD POWER IN TOUCH
CHAT.
SO ON THE FIRST SCREEN IT'S I
WANT.
THE SECOND IS TO PLAY.
THIS HAS THE CATEGORY OF TOYS
AND THEN THE BOTTOM RIGHT, THAT
IS WHAT THE CHILD IS USING TO
COMMUNICATE.
THE TEMPLATE IS THE SAME IN WORD
BASIC SO THEY CAN USE AND START
TO LEARN TO USE THOSE.
SOME CHILDREN ACTUALLY MOVE TO
THE POINT WHERE THEY CAN USE
WORD BASIC 60.
SO WE SEEN CHANGES IN THE
CHILDREN'S ABILITY TO USE TOUCH
CHAT.
I WANTED TO SHOW YOU ONE QUICK
VIDEO.
THIS IS LOOKING AT NOT JUST THE
QUANTITY OR THE CHANGE BUT ALSO
THE QUALITY OF CHANGELESS.
THIS WAS A RECENT LITTLE GUY
PLAYING A GAME WITH HIS PEER
THAT FOCUS CHILD IS IN THE
MIDDLE.
>> DO YOU WANT TO TELL THEM --
>> HE IS TRYING TO SAY,
HIGH-FIVE.
>> HIGH-FIVE.
>> UP HIGH.
HIGH-FIVE ME.
DOWN LOW.
IN THE MIDDLE.
GET THE PICKLE.
TRICKLE TRICKLE TRICKLE.
>> I JUST LOVES THAT VIDEO.
BECAUSE WHAT HAPPENS IN BASELINE
THERE WAS NO INTERACTIONS
BETWEEN THE CHILDREN AND WE
ALWAYS KEEP A SOCIAL PRAISE IN
SOMETHING THAT CAN GET THEM
INTERACTING AND THAT PEER CAME
UP ON THEIR OWN.
THAT WAS NOT ON THE iPAD.
BUILDING ON THE PMIs FOR THE
FUTURE WE HAVE TO LOOK AT
DIFFERENT MODALITIES, FUNCTIONS
AND THE RECIPROCAL INTERACTIONS.
WE MADE GREAT PROGRESS IN HOW TO
GET KIDS GOING BACK-AND-FORTH.
WE ARE LOOKING AT GESTURES,
WORDS AND THEN COMBINATION
THEREOF.
THERE IS MANY MODE CALLS A CHILD
CAN USE TO COMMUNICATE.
AND THEN THE TREATMENT RESPONSE
LOOKING AT INDIVIDUAL LEVEL
CHARACTERISTICS AND PEER
CHARACTERISTICS AND THEN HOW DO
WE TAILOR PEER MEDIATED
INTERVENTIONS TO BE MORE
APPROPRIATE?
AND WE ARE EXCITED TO BE ABLE TO
CONTINUE THIS LINE OF RESEARCH.
WE WERE JUST RECENTLY AWARDED
FUNDING TO LOOK AT A SMART
DESIGN.
TO LOOK AT ADAPTIVE
INTERVENTIONS FOR PRESCHOOLERS
BESIDES RESPONSE TO TREATMENT.
AND SIMILAR TO WHAT CONNIE IS
SAYING, WE HAVE A CRAZY DESIGN
THAT SHE GAVE HER INPUT ON.
SO WE ARE REALLY DWIGHTED TO BE
ABLE TO CONTINUE THIS RESEARCH
AND I THINK IT IS IT VERY
IMPORTANT WE ARE ABLE TO LOOK AT
THE INTERVENTION AND PEER
CHARACTERISTICS AND CHILD
CHARACTERISTICS AND HOW TO
TAILOR INTERVENTIONS TO BE MOST
AFFECT ITCH FOR INDIVIDUALS WITH
AUTISM WHO HAVE VARYING LEARNING
NEEDS.
AND I THINK I'M AT TIME.
THAT WAS QUICK.
>> HI.
THANK YOU, CATHY.
WE ARE MOVING ON NOW TO DAVID
MCNAUGHTON WHO WILL TALK ABOUT
AAC INTERVENTION TO ENHANCE
COMMUNICATION AND PARTICIPATION
IN COMMUNITY SETTINGS FOR
ADOLESCENTS AND ADULTS ON THE
AUTISM SPECTRUM.
>> DAVID MCNAUGHTON: THANK YOU.
I'M JUST GETTING ORGANIZED.
ARE YOU SEEING MY SLIDES?
>> PERFECT.
>> DAVID MCNAUGHTON: WONDERFUL.
THANK YOU.
SO MY NAME IS DAVID MCNAUGHTON.
I'LL BE PRESENTING TODAY ON
BEHALF OF JANICE LIGHT AND ERIC
JACOBS AND THE REST OF THE TEAM
HERE AT PENN STATE UNIVERSITY.
I'LL BE SPEAKING ABOUT AAC
INTERVENTION TO ENHANCE
COMMUNICATION AND PARTICIPATION
IN COMMUNITY SETTINGS FOR
AUTISTIC ADOLESCENTS AND ADULTS.
ONE MOMENT PLEASE.
SO A MAJOR THEME IS THE
IMPORTANCE FOR US TO THINK
BROADLY ABOUT CHALLENGES AND
SUPPORTS FOR COMMUNICATION.
AND I THINK THAT'S GOING TO BE
IMPORTANT BECAUSE AS MANY OF YOU
KNOW FROM YOUR RESEARCH, WE
HEARD TODAY IN LIVED EXPERIENCE.
MANY ADOLESCENTS AND ADULTS ON
THE AUTISM SPECTRUM EXPERIENCE
SEVERE CHALLENGES IN
PARTICIPATION IN EDUCATION,
EMPLOYMENT AND COMMUNITY
SETTINGS.
THERE IS HIGH INCIDENCE OF
LONELINESS REPORTED TO THIS
POPULATION.
ADOLESCENTS ON THE SPECTRUM ARE
5 TIMES MORE LIKELY TO DESCRIBE
THEMSELVES AS OFTEN OR ALWAYS
FEELING LONELY THAN ARE
ADOLESCENTS WITHOUT AUTISM
SPECTRUM DISORDER.
AND LESS THAN 10% OF ADULTS WITH
DEVELOPMENTAL DISABILITIES
INCLUDING MINIMALLY SPEAKING
AUTISTIC ADOLESCENTS AND ADULTS
WHO NEED COMMUNICATION SUPPORTS
RECEIVE COMMUNICATION SUPPORTS
THAT WOULD BE A BENEFIT TO THEM.
AND AS WAS POINTED OUT IN THE
VERY FIRST SESSION, RESEARCH TO
DATE HAS REALLY NOT ADDRESSED
THIS GAP.
CHRISTINE HOLLY FIELD WHEN SHE
LOOKED AT THE RESEARCH IN THIS
AREA, REPORTED THAT MORE THAN
TWO-THIRDS OF THE RESEARCH TO
DATE HAS FOCUSED ON SIMPLE
REQUESTS FOR OBJECTS AND
ACTIVITIES.
SO THE NEEDS OF THIS POPULATION
ARE NOT CURRENTLY BEING MET
THROUGH RESEARCH.
SO THE CHALLENGE IS LARGE.
THERE IS ENORMOUS HETEROGENEITY
IN THIS POPULATION AND THERE
WILL BE NO SINGLE SOLUTION.
HOWEVER, I THINK AN IMPORTANT
FIRST STEP IS TO THINK ABOUT AAC
AND COMMUNICATION SUPPORTS VERY
BROADLY TO THINK ABOUT WHAT
MIGHT A NEW GENERATION OF
TECHNOLOGY THAT CAN HELP MEET
NEEDS IN NATURAL SETTINGS MIGHT
LOOK LIKE.
AND I'D LIKE TO TALK ABOUT WHAT
WE THINK IS ONE PROMISING
APPROACH TODAY.
SO, I'LL BE TALKING ABOUT A NEW
SOFTWARE APP CALLED, VIDEO
VISUAL SCENE DISPLAYS.
JANICE INTRODUCED THIS A LITTLE
BIT IN HER PRESENTATION.
BUT THESE ARE APPS THAT SUPPORT
KIND OF A COMBINATION OF A VIDEO
MODELING APPROACH WITH
INTEGRATED COMMUNICATION
SUPPORTS.
SO, THE IDEA IS THAT IN USING A
VIDEO VISUAL SCENE DISPLAY
APPROACH, FIRST THE INTERVENTION
TEAM WITH THE ASSISTANCE OF THE
INDIVIDUAL, CAPTURED A VIDEO OF
AN EVENT OR AN ACTIVITY OF
INTEREST.
THEN USING THE APP, BY PAUSING
THE KEY MOMENTS WITHIN THE APP,
A VISUAL SCENE IS CREATED.
AND BY A VISUAL SCENE, I MEAN A
STILL SCENE THAT APPEARS IN THE
VIDEO, WHICH CAN THEN BE
PROGRAMMED WITH A HOTSPOT.
AND A HOTSPOT IS SIMPLY A
TARGETED AREA WITHIN THAT STILL
SCENE THAT WHEN TOUCHED PROVIDES
SPEECH INPUT.
SO AGAIN THINK OF THIS AS BEING
SOMEWHAT LIKE A VIDEO MODELING
APPROACH THAT AN INDIVIDUAL
MIGHT USE TO LEARN A NEW SKILL
THAT WILL PAUSE FROM TIME TO
TIME AND PROVIDE THESE
COMMUNICATION SUPPORTS.
WE HAVE BEEN USING THIS IN A
VARIETY OF INTERVENTIONS AND
STUDIES SO FAR BUT I JUST WANTED
TO GIVE A BRIEF GLIMPSE OF WHAT
THE INDIVIDUAL WOULD SEE IN
LOOKING AT THE APP.
SO THIS WAS USED BY AN
INDIVIDUAL TO SUPPORT HIS
PARTICIPATION WORKING IN A
GREENHOUSE.
HE HAD 19 STEPS THAT HE
PERFORMED IN WORKING IN HIS
GREENHOUSE ACTIVITIES.
AND EACH OF THE STEPS IS
REPRESENTED HERE BY A THUMBNAIL
AND THE INDIVIDUAL WOULD
NAVIGATE THROUGH THE DIFFERENT
SCENES BY MAKING USE OF THE PLAY
BUTTON TO WORK HIS WAY THROUGH.
SOME OF THE THINGS WE LEARNED IN
OUR RESEARCH TO DATE IS THAT THE
VIDEO VISUAL SCENE DISPLAY
APPROACH SEEMS TO PROVIDE GOOD
SUPPORT FOR INDEPENDENT
PERFORMANCE OF COMPLEX,
MULTISTEP SKILLS IN COMMUNITY
SETTINGS.
SO ALL OF THE ACTIVITIES THAT
ARE CHOSEN FOR THE INTERVENTION
ARE IDENTIFIED WITH THE
PARTICIPATION OF THE AUTISTIC
INDIVIDUAL.
THE APP HAS BEEN EASILY LEARNED
AND USED BY AUTISTIC PERSONS AND
ONE OF THE INTERESTING THINGS IS
IT PROVIDES COMMUNICATION
ASSISTANCE AS NEEDED.
SO THIS IS OFTEN OFTEN USED BY
INDIVIDUALS WITH SOME SPEECH BUT
WHO MAY BE RELUCTANT TO USE
THEIR SPEECH IN A PARTICULAR
SITUATION OR FIND IT DIFFICULT.
SO AT THAT TIME, THEY CAN USE
THE RECORDED SPEECH WITHIN THE
DEVICE.
AT OTHER TIMES THEY USE THE
RECORDED SPEECH AS A PROMPT OR
QUEUE FOR THEMSELVES AND THEN
THEY THEN REPEAT WHAT THEY
HEARD.
SO IT HELPS TO ADDRESS SOME OF
THE STRESS CHALLENGES THAT HAVE
BEEN DISCUSS YOUD TODAY.
THE APP IS AVAILABLEOD HIGHLY
PORTABLE COMMONLY AVAILABLE
TECHNOLOGY.
WHAT WE HAVE BEEN EXCITED ABOUT
HAS BEEN THE EASE WITH WHICH WE
CAN CREATE HIGHLY INDIVIDUALIZED
INTERVENTIONS TO ADDRESS
ACTIVITIES OF INTEREST TO THE
INDIVIDUAL.
WE HAVE EXAMINED THE APPROACH IN
A SERIES OF SINGLE CASE
EXPERIMENTAL STUDIES LOOKING AT
SUPPORTING PARTICIPATION AND
COMMUNICATION IN SHOPPING,
RIDING PUBLIC TRANSPORTATION,
WORKING IN A FOOD BANK, WORKING
IN A LIBRARY.
AND WE ARE CURRENTLY RUNNING A
RANDOMIZED CONTROL TRIAL STUDY
WITH A TOTAL OF 72 PARTICIPANTS.
WE HAVE COMPLETED INTERVENTION
WITH 18 SO FAR.
ALL OF THOSE INDIVIDUALS HAVE
SHOWN GAINS WITH THE VIDEO VSD
APPROACH.
AND WHAT HAS BEEN EXCITING FOR
US HAS BEEN THAT THE
INTRODUCTION OF THE VIDEO VSD
HAS ONLY REQUIRED TWO SESSIONS
IN WHICH BASICALLY WE ARE
PROVIDING A MODEL IN GUIDED
PRACTICE IN THE USE OF A VIDEO
VSD APP.
AND THEN THE INDIVIDUAL TAKES
OVER IN THE USE OF THE VIDEO VSD
APP TO PERFORM THE SKILL AND TO
COMMUNICATE IN THAT ENVIRONMENT.
THE INTERTIME HAS BEEN MINIMAL.
THAT IS A LITTLE BIT ABOUT THE
VSD SUPPORTING PARTICIPATION.
I WANT TO TALK ABOUT THE USE OF
THE APP AS A SOCIAL INTERACTION
SUPPORT.
THIS IS A BIG JUMP BECAUSE WE
ARE TALKING ABOUT USING ONE APP
IN TWO VERY DIFFERENT WAYS.
BUT I'M HOPING I'LL BE ABLE TO
CLARIFY THIS.
WHEN WE ARE USING A VIDEO VSD
APP TO SUPPORT SOCIAL
INTERACTION, WE ARE THINKING
ABOUT USING IT TO PROVIDE A
CONTEXT TO ASSISTED AN
INDIVIDUAL IN SHARING
INFORMATION.
WE HAVE THE SAME BENEFITS AS
BEFORE WHERE IT IS EASY TO USE
HOTSPOTS FOR PERSONALIZED
VOCABULARY.
THE OTHER NICE THING ABOUT IT IS
BECAUSE AS THE VIDEO PLAYS, IT
PAUSES IF ARE THOSE STILL VISUAL
SCENES WITH HOTSPOTS.
IT NATURALLY SUPPORTS
CONVERSATIONAL TURN TAKING.
WHY ARE NOT ASKING AN INDIVIDUAL
TO ATTEND TO A VIDEO ACTIVITY
AND MAKE INTEGRATED USE OF AN
AAC DEVICE AT THE SAME TIME.
WE HAVE WORKED WITH PRESCHOOLERS
WHO WANTED TO USE DORA THE
EXPLORER AND THOSE TYPES OF
CHILD LEVEL VIDEOS.
WE USED THIS AS AN INTERVENTION
TO SUPPORT PLAY.
AND IN SOME OF OUR MOST RECENT
INTERVENTIONS WITH ADOLESCENTS,
WE MADE USE OF VIDEOS TAKEN DOWN
FROM YouTube AND THEY HAVE
REALLY RUN THE FULL GAMUT OF
THINGS ADOLESCENTS ARE
INTERESTED IN.
SO MAKE UP, PLAYING VIDEO GAMES,
SPORTING EVENTS, EVERYTHING.
AND I WANT TO TALK ABOUT AN
INTERVENTION WHERE WE WORKED
WITH A BEST BUDDIES PROGRAM T
REQUIRED LESS THAN THREE MINUTES
OF TRAINING FOR THOSE
ADOLESCENTS TO LEARN TO MAKE USE
OF THIS APP.
ONCE THEY DID, WE SAW THESE
CHANGES.
SO IN BASELINE, AND I'M JUST
SHOWING ONE BUT THIS IS COMMON
ACROSS ALL PARTICIPANTS.
VERY LOW LEVELS OF
PARTICIPATION.
REALLY BOTH FROM THE PARTICIPANT
AND THE PEER.
AFTER A THREE-MINUTE TRAINING,
WE SAW THIS RAPID JUMP IN TURNS,
RAPID INCREASE IN USES OF SPEECH
FOR BOTH THE PEER AND FOR THE
AUTISTIC ADOLESCENT.
AND I THINK TWO IMPORTANT
THINGS, NUMBER 1, THERE WAS NO
ADULT PRESENT AFTER THE
THREE-MINUTE TRAINING HAD BEEN
PROVIDED.
THAT'S VERY IMPORTANT TO
ADOLESCENTS.
THEY DON'T WANT ADULTS AROUND.
AND NUMBER 2, WE WERE REALLY
ABLE TO MAKE THIS ON THE
INTEREST OF THE INDIVIDUALS.
AND THAT WAS IMPORTANT.
WITH RESPECT TO RESEARCH
PRIORITIES, WE ARE FOCUSING
TODAY ON VALUED OUTCOMES ACROSS
ALL THE IMPORTANCE IN ADULT
LIFE.
AND I ALSO ENCOURAGE US TO THINK
ABOUT CRATEDDIVE WAYS TO SUPPORT
PEER INTERACTION.
NOT ALL OF US WANT TO TALK ABOUT
THE NFL BUT IF WE WANT TO, WE
NEED A WAY TO DO IT SO WE NEED
TO DEVELOP COMMUNICATION
SUPPORTS THAT WILL ENABLE PEOPLE
TO ADDRESS TOPICS THAT ARE OF
INTEREST TO THEM.
THANK YOU.
>> NOW WE'LL SWITCH TO ADULTS.
HELEN?
>> THANK YOU.
THAT WAS A WONDERFUL SET OF
PRESENTATION.
WE'RE NOW GOING TO TURN TO TWO
PRESENTATION THAT IS FOCUS ON
INTERVENTION APPROACHES THAT
HAVE BEEN DEVELOPED OUTSIDE OF
THE AUTISM ARENA.
PEOPLE OR ADULTS WITH ACQUIRED
AAC NEEDS.
AND WE ARE GOING TO BEGIN THIS
SESSION WITH MELANIE FRIED-OKEN
WHO WILL TALK ABOUT BRAIN
COMPUTER INCH FACE.
A NEW INTERVENTION FOR THE
ACCESS NEEDS OF ADULTS WHO
EXPERIENCE SEVERE SPEECH AND
MOTOR CHALLENGES.
WHILE MELANIE IS GETTING HER
SCREEN GOING, I'LL NOTE THAT WE
HAVE ALREADY HAD A COMMENT FROM
OUR WEBINAR OBSERVERS RELATING
TO QUESTIONS ABOUT
BRAIN-COMPUTER INTERFACE.
SO EXCITING THAT MELANIE IS
GOING TO BE SPEAKING ABOUT THIS
TOPIC.
OVER TO YOU.
>> MELANIE: THANK YOU.
YES, WE ARE GOING TO TALK ABOUT
BRAIN-COMPUTER INTERFACE TODAY
AS A POTENTIAL ACCESS NEED.
I'M GOING TO -- FOR THOSE WHO
DON'T KNOW ABOUT BCI, I'M GOING
TO TRY TO GIVE AN OVERVIEW
BEFORE WE TALK ABOUT RESEARCH.
SO WHAT IS A BCI?
BCI IS TECHNOLOGY WHEREBY A
COMPUTER DETECTIVES A SELECTION
MADE BY A PERSON WHO DOES NOT
RELY ON MUSCLE MOVEMENT OR
NEUROMUSCULAR ACTIVITY.
THE TECHNOLOGY USINGS THE
PERSON'S CHANGES IN BRAIN
ACTIVITY AS THE INTENDED
EXECUTION.
SO FOR A SPELLING BCI, INSTEAD
OF HITTING A KEY ON A KEYBOARD,
THE BRAIN ACTIVITY IS THE SAME
AS KEY SELECTION.
THE TECHNOLOGY SUBSTITUTES FOR
THE LOSS OF TYPICAL
NEUROMUSCULAR OUTPUTS SO THAT
PEOPLE CAN INTERACTION WITH
THEIR ENVIRONMENTS THROUGH BRAIN
SIGNALS RATHER THAN THROUGH
MUSCLE MOVEMENT.
HERE IS A CLASSIC SCHEMATIC.
IF YOU SEE THE USER FIRST, THE
USER WILL SEE EITHER A VISUAL
AUDITORY OR TACTILE STIMULUS,
WHICH WILL CAUSE A SPECIFIC
BRAIN WAVE TO OCCUR.
THE BRAIN WAVE IS ACQUIRED BY
SOME HARDWARE SENT TO A COMPUTER
FOR PROCESSING.
AND THAT BRAIN WAVE WILL BE A
CONTROL SIGNAL FOR ASSISTIVE
TECHNOLOGY SUCH AS A KEYBOARD, A
CURSOR, AN ELECTRIC WHEELCHAIR
OR A ROBOTIC ARM.
WHO WOULD USE A BCI FOR
COMMUNICATIONAT?
THIS POINT, BCI IS CURRENTLY
USED IN RESEARCH STUDIES WITH
PARTICIPANTS WHO PRESENT WITH
LOCKED-IN SYNDROME.
IT'S IMPORTANT TO NOTE THAT BCI
SYSTEMS WORK BEST ON INDIVIDUALS
WITH MINIMAL TO NO VOLUNTARY
MOVEMENT.
IT IS VERY DIFFICULT TO ACQUIRE
BRAIN SIGNALS FROM PARTICIPANTS
WITH EXTRANEOUS OR INVOLUNTARY
MOVEMENT.
DIFFICULT WITH THOSE WHO HAVE
ATTENTION CHALLENGES OR FOR
THOSE WHO CANNOT TOLERATE
WEARING A BCI CAP.
RIGHT NOW, MOST OF THE RESEARCH
IS BEING DONE WITH FOUR GROUPS
OF ADULTS.
INDIVIDUALS WITH END STAGE ALS,
BRAINSTEM STROKE, HIGH LEVEL
SPINAL CORD INJURY OR TRAUMATIC
BRAIN INJURIES.
WE WOULD LIKE TO EXTEND THIS TO
TALK ABOUT LOCKED IN SYNDROME BY
FUNCTION INSTEAD OF BY
DIAGNOSIS.
SO FOR THOSE WITH SEVERE SPEECH
AND PHYSICAL IMPAIRMENT.
HERE ARE SOME OF THE DIAGNOSIS
THAT WE ARE TRYING TO EXPAND IT
TO.
WE ALSO WOULD LIKE TO INCLUDE
INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES
AND THOSE WHO ARE NOT GENITIVE
SPELLERS.
WE CAN INTRODUCE IT TO THOSE WHO
ARE NOT SPELLING FULL SENSES BUT
NO LETTERS.
OR FOR THOSE WITH IDD WHO WANT
TO MEET THE COMMUNICATION GOAL
OF PARTICIPATING IN FAMILY LIFE
WITH PRE-DETERMINED MESSAGES.
OR FOR THOSE WHO RELY ON ICONS
AND PICTURES FOR COMMUNICATION.
THIS IS NOT YET DONE.
WE WANT TO INCLUDE INDIVIDUALS
WITHIMENTED D AND THEIR FAMILIES
ON ALL RESEARCH TEAMS FROM
DEVELOPING THE RESEARCH
QUESTIONS TO DISSEMINATING
RESULTS.
LET'S TALK ABOUT SOME OF THE
CURRENT BCI RESEARCH.
RIGHT NOW THERE ARE TWO FORMS OF
CURRENT BCI WAS.
ONE IS CALLED IMPLANTABLE BCI
WAS WHERE YOU ACTUALLY PUT
ELECTRODE ARRAY ON THE PERSON'S
BRAIN.
IT'S REALLY GOOD FOR PICKING UP
NEUROPATTERNS.
HOWEVER, THE INDIVIDUAL HAS TO
WEAR SOMETHING THAT CONNECTS
THAT ARRAY TO A COMPUTER.
THERE IS PROBLEMS -- CHALLENGES
WITH SURGERY AND INFECTION.
AND YOU ACTUALLY HAVE THESE
LITTLE THINGS STICKING OUT OF
YOUR SKULL.
THE SECOND TYPE, WHICH WE'RE
GOING TO DISCUSS TODAY, THESE
ARE CALLED NON-IMPLANTABLE OR
WEARABLE BRAIN COMPUTER
INTERFACES.
WE HAVE A WET ELECTRODES CAP
THAT PEOPLE TRY AND A DRY
ELECTRODES CAP.
THE DRY ARE BIG AND HEAVY BUT
THEY ARE GETTING SMALLER.
RIGHT NOW THERE ARE MANY
DIFFERENT BRAIN SIGNALS THAT CAN
ACQUIRE -- WE CAN ACQUIRE FROM
BCIs.
THERE IS ONE CALLED THE P300.
THIS IS SURPRISE OR ATTENTION
EVOKED POTENTIAL THAT CAN BE
ACQUIRED THROUGH MULTIPLE
STIMULUS PRESENTATIONS.
MOST OF THE SPELLERS TODAY USE
THE P300 WAVE.
WE ALSO HAVE THE SENSORY MOTOR
RHYTHM FOR MOTOR IMAGERY.
AND THAT DETECTIVES MOVEMENT.
SO IF I WOULD TELL YOU, THINK OF
KICKING A BALL TO THE RIGHT,
THINK OF KICKING A BALL TO THE
LEFT.
YOU ARE PRODUCING SENSORY MOTOR
RHYTHMS FOR MOTOR IMAGERY.
AND THE THIRD ONE THAT IS OFTEN
USED IS THE STEADY STATE VISUAL
EVOKED POTENTIAL.
THIS IS AN AVERAGE WAVE THAT
OCCURS IN RESPONSE TO MULTIMEL
VISUAL STIMULUS PRESENTATIONS.
IN OUR LAB, WE HAVE BEEN WORKING
WITH A P300 SPELLERS.
IT'S CALLED THE RSVP KEYBOARD
FOR COMMUNICATION.
OUR GOAL IS TO USE A
USER-INCLUDED PER SUSPECT ITCH
SO INDIVIDUALS WITH INCOMPLETE
LOCKED IN SYNDROME ON OUR TEAM.
INDIVIDUALS COMMUNICATE
INDEPENDENT OF NEUROMUSCULAR
OUTPUT BY TRACKING SELECTIONS.
WE HAVE CHANGING IN THEIR EEG
ACTIVITY.
AND THIS IS FUSED WITH LANGUAGE
MODELS.
SO WE ARE USING SOME FORM OF AI.
NOW I'M GOING TO SHOW YOU A
VIDEO.
HOPEFULLY I OPTIMIZED IT SO YOU
CAN HEAR IT.
BUT LET ME KNOW IF YOU CAN'T
HEAR IT.
OOPS.
SORRY.
>> ARE YOU READY TO GO?
SO THIS IS FUN.
HERE WE GO.
THERE IS ONE LETTER PRESENTED AT
A TIME IN THE MIDDLE OF THE
SCREEN.
SO IT'S JUST A FLASH, FLASH,
FLASH.
LETTER, LETTER, LETTER.
YOU'RE WATCHING THAT STREAM OF
LETTERS GO BY.
WHEN YOU SEE THE LETTER YOU
WANT, YOU HAVE THE INVOLUNTARY
BRAIN RESPONSE.
YES, THAT ONE.
>> INSTEAD OF SOMEONE MOVING
THEIR HAND TO PRESS THE LETTER,
M, THEY ARE LOOKING AT A SCREEN
AND WHEN THEY SEE THE LETTER M,
THEY GET A SPECIAL BRAIN WAVE, A
SURPRISE BRAIN WAVE.
THAT IS CALLED A P300.
THAT P300 BRAIN WAVE IS BEING
TAKEN AS THEIR P STROKE.
>> JUST THE VARIOUS PROGRAMS
CREATED BY THE ENGINEERS OF
COMPUTER PROGRAMMERS TO SEE IF
THEY ARE FRIENDLY FOR PEOPLE
LIKE ME.
THE EXERCISES I DO ON THE
COMPUTER ARE CHALLENGING AND I
LIKE BEING CHALLENGED.
[ MUSIC PLAYING ]
>> THAT'S HOW IT WORKS.
I WOULD LIKE TO PROPOSE THAT WE
EXPAND BCI FOR AAC USES IN FIVE
DIFFERENT AREAS.
THE FIRST AREA IS BCI CAN SERVE
AS A SWITCH.
SO IF YOU USE THAT SMR OR MOTOR
IMAGERY, IT'S A BINARY CHOICE.
THINK RIGHT, THINK LEFT.
AND IN FACT, BCI -- P300BCI AS A
SWITCH, HAS BEEN DISCUSSED AND
DEMONSTRATED WITH THE DINAH BOX
SPEECH GENERATING DEVICE USING
COMMUNICATOR 5 SOFTWARE.
ALSO, THE BCI HAS BEEN USED FOR
A PLUG-AND-PLAY INTERFACE TO
OPERATE A COMMERCIAL ASSISTIVE
TECHNOLOGY.
HERE YOU CAN SEE AN INDIVIDUAL
WHO IS USING IT AS A SWITCH FOR
THE DINAH WRITE SPEECH
GENERATING DEVICE TO PICK
LETTERS AND SPELL.
SO AS A SWITCH IS ONE OPTION.
A SECOND OPTION IS BCI AS A
COMMUNICATION DEVICE.
THERE ARE A NUMBER OF DEVICES.
WHAT I SHOWED YOU, THE RSVP
KEYBOARD, THAT IS A DEVICE IN
ITSELF IN THAT IT HAS ITS OWN
LANGUAGE MODELING AND SELECTION.
BCI CAN BE USED AS AN ASSESSMENT
TOOL.
SO WE CAN ADAPT STANDARDIZED
TOOLS TO MEASURE COGNITIVE
ABILITIES IN PATIENTS WHO CANNOT
PRODUCE MOTOR RESPONSES.
OR FOR LANGUAGE TESTING.
SO YOU CAN IMAGINE USING
FLASHING STIMULI FOR P300 WAVE
OR A STEADY STATE VISUAL EVOKED
POTENTIAL SIGNAL OR A BINARY
CHOICE MOTOR IMAGERY FOR
INDIVIDUALS WITH ALS, RETT
SYNDROME, HOPEFULLY IN THE
FUTURE, INDIVIDUALS WITH SPASTIC
CP.
BCI SHOULD BE USED AS AN
INTERVENTION TOOL.
SO RIGHT NOW THERE IS A GROUP
CALLED BCI FOR KIDS AT THE
UNIVERSITY OF CALGARY.
AND THEY USE A SIMPLE BCI FOR
VIDEO GAME PLAYING AND FOR
PAINTING.
AND HEARING THE TESTIMONY FROM
FAMILIES OF CHILD WHO HAS SEVERE
DISABILITIES ACTUALLY BEATING
THEIR SIBLING AT A VIDEO GAME,
ARE WONDERFUL T SHOULD ALSO BE
USED FOR CONVERSATION AND
RECIPROCAL COMMUNICATION.
OR FOR LITERACY, LEARNING TO
READ OR WRITE, A REPETITIVE LINE
READING.
OR IMAGINE, DOESN'T MATTER WHAT
LETTER THEY CHOOSE WITH THE BCI
FOR INTRODUCTION TO LITERACY.
THEN FINALLY BCI SHOULD BE USED
AS A RESEARCH TOOL.
IT SHOULD BE USED FOR RECEPTIVE
AND EXPRESSIVE LANGUAGE.
SEEING IF YOU INTRODUCE A BCI
FOR COMMUNICATION IF THAT DOES
CHANGE RECEPTIVE AND EXPRESSIVE
LANGUAGE.
IT COULD BE USED AS AN
EXPRESSIVE MODALITY.
WE SHOULD LOOK TO SEE OR TO
RESEARCH BRAIN DEVELOPMENT AND
WHETHER THE INTRODUCTION OF BCI
FOR INDIVIDUALS WITH MINIMAL
MOVEMENT.
IF THERE WERE CHANGES IN BRAIN
DEVELOPMENT.
WE SHOULD BE LOOKING AT
INTERACTION CHANGE WHEN IS WE
INTRODUCE A BCI AND FINALLY
NEUROENGINEERING DEVELOPMENTS
FOR INDIVIDUALS WITH ADDITIONAL
MOVEMENTS OR WITH ATTENTION
CHALLENGES.
AND HOW ARE WE GOING TO CLEAN UP
THOSE BRAIN WAVES SO THAT THEY
ARE MEANINGFUL AND WE CAN USE IT
AS A RELIABLE, CONSISTENT AND
SAFE ACCESS METHOD FOR
TECHNOLOGY.
THANK YOU.
L.
>> HELEN TAGER-FLUSBERG: THANK
YOU VERY MUCH, MELANIE.
THAT WAS EXCITING TO SEE THE
DEVELOPMENTS IN THAT FIELD.
THEN OUR FORMAL PRESENTATION
BEFORE WE MOVE INTO COMMENTARY,
IS SARAH WALLACE WHO IS GOING TO
BE TALKING ABOUT AAC STRATEGIES
FOR ADULTS WITH AFACKIA.
SARAH ARE YOU HEAR YET?
>> SHE MAY NOT BE HERE.
>> THEY CHANGED HER TEACHING
TIME SO SHE WAS GOING TO TRY TO
GRAB US AFTER SHE FINISHED TEACH
TEACHING.
[ MULTIPLE SPEAKERS ]
>> I THINK WE'LL MOVE TO THE
COMMENTARY.
>> I THINK WE SHOULD MOVE AHEAD.
>> AND WE'LL COME BACK TO HER
WHEN SHE ARRIVES.
>> SO WE HAVE NOW COMMENTARY BY
STAKEHOLDERS, PRACTITIONERS,
RESEARCHERS.
AND WE'RE GOING TO START WITH
DENISE LOMBARDI.
ARE YOU HERE SOMEWHERE?
AND SHE IS A MOTHER AND HER SON,
RJ IS AN INDEPENDENT TYPIER.
SO ARE YOU READY?
>> DENISE LOMBARDI: I AM ALMOST
READY.
I'M JUST TRYING TO SHARE MY
SCREEN SO WE CAN GET RJ UP HERE.
CAN YOU SEE THE VIDEO?
>> YES.
>> WONDERFUL.
SO, HELLO TO YOU ALL.
THANK YOU VERY MUCH FOR THIS
OPPORTUNITY TO SPEAK ABOUT MY
SON, RJ.
MY NAME IS DENISE LOMBARDI.
AND MY SON, RJ, IS 19 YEARS OLD.
HE WAS DIAGNOSED WITH AUTISM
WHEN HE WAS 19 MONTHS OLD AND
EPILEPSY AT AGE TWO.
HE HAS A HOST OF OTHER
NEUROLOGICAL CONDITIONS.
AND I'M GOING TO TRY TO GIVE YOU
A LITTLE BIT OF HIS BACKGROUND
AND HOW WE GOT TO THIS POINT.
I HAVE TO TELL YOU I'M SO
EXCITED TO SEE MANY OF THESE
PRESENTERS TODAY AND I'M GOING
TO TALK A LITTLE BIT ABOUT HOW
WE USE THE ACCESSIBLE LITERACY
LEARNING PROGRAM BY DR. LIGHT
AND DR. DAVID MCNAUGHTON MANY
YEARS AGO.
SO MY SON WAS VERY OBVIOUSLY
IMPACTED BY HIS DISABILITY AT A
VERY EARLY AGE.
AND WE WILL TO CAMPAIGN FOR HIM
TO GET HIS DEVICE.
WE ARE GOING BACK TO PROBABLY
2007 WHEN HE RECEIVED HIS FIRST
DEVICE.
SO HE WAS JUST ABOUT 4 YEARS OF
AGE.
ONE OF THE REASONS WHY I
CAMPAIGNED FOR THIS DEVICE, IS I
JUST SUSPECTED IT WAS GOING TO
WORK FOR HIM BASED ON HIS
LEANINGS TOWARDS COMPUTERS AND
TECHNOLOGY.
AND LATER ON, ONCE WE FOUND
LITERACY FOR LEARNING PROGRAM,
ALMOST IMMEDIATELY I FELT THAT
THAT WAS ALSO GOING TO HELP HIM
TREMENDOUSLY BASED ON HIS EARLY
INCLINATIONS TOWARDS THE
ALPHABET.
AND HIS APPRECIATION FOR
PHONICS.
SO LET ME PLAY THIS VIDEO FOR
YOU.
[ VIDEO ]
I'M JUST GOING TO STOP SHARING
FOR A MINUTE.
WHAT IS OCCURRING IN THAT VIDEO
IS THAT HE IS TEACHING HIMSELF
HOW TO SPELL OUT A WORD.
AND BATHING SUIT IS SOMETHING
THAT IS HIGHLY REINFORCING -- HE
WANTED TO GO SWIMMING.
UNFORTUNATELY WE COULDN'T GRANT
THAT REQUEST AT THAT MOMENT.
BUT IT WAS ALSO SIGNIFICANT IN
THAT VIDEO YOU HEARD AND SAW IS
THAT HE PUSHED THE LETTER, Q.
AND HE KNEW IMMEDIATELY THAT WAS
SOMETHING THAT WAS INCORRECT.
SO HE DELETED IT.
I WAS LUCKY I WAS ABLE TO CATCH
THIS EVENT ON VIDEOTAPE.
THERE WAS ANOTHER EVENT NOT THAT
LONG AGO WHERE HE WANTED TO ASK
US FOR BRED STICKS AT OLIVE
GARDEN, ONE OF HIS FAVORITE
PLACES.
AND BRED STICKS IS NOT AN ICON
THAT IS PROGRAMMED IN HIS DEVICE
BUT BREAD IS.
SO HE DID THE SAME PROCESS OF
REFERENCING THE SCREEN -- I'M
SORRY IF I DIDN'T INCLUDE THAT
IN MY INITIAL EXPLANATION OF THE
VIDEO.
HE WAS GOING BACK-AND-FORTH
BETWEEN THE TWO PAGES TO SEE
WHAT THE SPELLING WAS.
SO ANYWAY, GOING BACK TO THE
BREAD STICKS EVENT.
HE STARTED TO TYPE OUT BREAD,
BASED ON THE ICON THAT HE SAW.
BUT STICKS IS NOT SOMETHING THAT
IS PROGRAMMED IN HIS DEVICE.
AND I THINK THIS IS WHERE PART
OF WHAT WE HAD DONE WITH THE
ACCESSIBLE LITERACY LEARNING.
IN HIS HEAD HE IS TRYING TO
FIGURE OUT, OKAY, WHAT SOUNDS
LIKE STICKS?
SO, HE DIDN'T NECESSARILY USE
THE LETTERS BUT HE REALIZED --
AND THIS IS REALLY AN EFFICIENT
WAY OF COMMUNICATING -- THAT THE
NUMBER 6 WAS SUFFICIENT ENOUGH
FOR HIM TO TYPE OUT BREAD, THE
NUMBER 6, HIT THE SENTENCE, AND
HE SAID, BREAD STICKS.
GOOD!
PERFECT.
THAT'S AMAZING.
AND IT JUST GOES TO SHOW YOU
THAT EVEN THOUGH HE IS MINIMALLY
VERBAL AND SERIOUSLY DISABLED BY
HIS AUTUMN, THERE IS STILL SO
MUCH GOING ON.
AND ONE OF THE REASONS OR OTHER
REASONS WHY I USE THE LEARNING
LITERACY LEARNING PROGRAM, WAS
FOR THIS IDEA THAT -- I CAN
ALWAYS PROGRAM ICONS INTO HIS
DEVICE OF THINGS I KNOW THAT HE
KNOWS AND WANTS.
BUT WHAT IS GOING TO ENABLE HIM
TO TELL US THE THINGS THAT WE
DON'T KNOW THAT HE KNOWS?
AND I ALWAYS FELT THAT PHONICS
WAS THAT BRIDGE.
POTENTIALLY BE THAT BRIDGE FOR
HIM.
AND I HAVE TO TELL YOU, THIS
PROGRAM WASN'T PART OF HIS
STANDARD CURRICULUM.
THIS WAS SOMETHING THAT WE DID
WITH HIM AS PART OF OUR HOME
THERAPY.
IT'S SOMETHING THAT I CAN DO
WITH HIM SPECIFICALLY.
IT WASN'T IN A VERY STANDARDIZED
TYPE OF ENVIRONMENT.
THIS WAS JUST MOM BASICALLY
SITTING DOWN WITH HIM AND TRYING
TO TEACH HIM WHEN YOU PUT THESE
SOUNDS TOGETHER IT'S SIGNIFICANT
AND IT MEANS SOMETHING.
I THINK HE GETS THAT.
SO I CAN'T SAY THANK YOU ENOUGH
TO THE RESEARCHERS FOR THAT
PROGRAM.
I THINK THERE IS SO MUCH
POTENTIAL.
I'M SO INCREDIBLY PROUD OF HIM.
I WOULD LOVE TO SEE LITERACY
COMMUNICATION VIA A DEVICE.
I'D LOVE TO SIGH MORE RESEARCH
ON THAT AND FOR IT TO BE PART OF
A STANDARD CURRICULUM.
AND THANK YOU ALL SO MUCH FOR
LISTENING.
>> THANK YOU FOR SHARING.
THAT IS AN IMPORTANT COMMENT AND
ALSO GREAT TO SEE RJ.
SO THANK YOU.
SO NEXT WE HAVE HOWARD SHANE HAS
COMMENTS.
HE IS A SPEECH-LANGUAGE
PATHOLOGIST AND RESEARCHER.
HOWARD?
>> HELLO.
LET ME GET MY SCREEN UP.
I HAVE BEEN CHARGED WITH TALKING
ABOUT SOME NOVEL LANGUAGE
INTERVENTIONS.
AND LET'S GET RIGHT TO IT.
THIS IS MY RESEARCH TEAM AT
BOSTON CHILDREN'S HOSPITAL IN
THE AUTISM LANGUAGE PROGRAM.
MANY OF THE INNOVATIONS FOR
MINIMALLY VERBAL CHILDREN AND
ADULTS, ADOLESCENTS HAVE COME
FROM AUGMENTIVE AND ALTERNATIVE
COMMUNICATION.
SO I'M GOING TO PRETTY MUCH KEEP
FOCUSED ON THAT PARTICULAR GROUP
GROUP.
AND ARE YOU SEEING THIS?
AM I SHOWING ON THE SCREEN?
>> YOUR FACE ISN'T SHOWING, NO.
>> LET ME JUST FIX THAT.
THERE WE GO.
BACK TO THE SCREEN.
SORRY ABOUT THAT.
ONE THING THAT I'M AWARE OF
GIVEN MY EXPERIENCE AT BOSTON
CHILDREN'S WE SEE CLOSE TO 800
CHILDREN A YEAR IN OUR CENTER.
AND MOST OF THEM ARE MINIMALLY
VERBAL.
AND MINIMALLY VERBAL CHILDREN
ARE REALLY PRETTY UBIQUITOUS IN
OUR SCHOOL SYSTEMS.
AND SO, I'M GOING TRY TO FOCUS
ON THE KINDS OF INTERVENTIONS
WHERE WE ARE USING AAC.
JANICE DID A GREAT JOB.
I ALSO WANT TO TALK ABOUT
SOMETHING WE CALL SEEING QUEUES,
WHICH CAN BE BOTH STATIC --
SYMBOLS THAT REPRESENT A EVENT
OR ACTIVITY.
HERE WE HAVE GUM BEE PUSHING A
CAR.
IT'S INTERESTING THAT YOU DON'T
ACTUALLY NEED TO BE ABLE TO
UNDERSTANDS LANGUAGE AND BE ABLE
TO PROCESS THIS AND CARRY OUT
THE ACTIVITY.
IF I HAVE THOSE TOYS ON THE
TABLE FOR EXAMPLE.
WE HAVE DONE A NUMBER OF STUDIES
THAT SHOW BY USING A SEEING
QUEUE, WE CAN INCREASE THE
DIRECTION FOLLOWING WHEN A
SPOKEN COMMAND IS SUPPLEMENTED
BY A STATIC OR DYNAMIC SCENE
QUEUES.
LET ME GIVE YOU AN EXAMPLE OF
THAT.
>> CAN YOU PUT GUM BEE IN THE
BED?
LOOK.
PUT GUM BEE IN THE BED.
YOU DID IT.
>> IT'S LIKE A LIGHT TURNS ON.
>> AND THEN CAN YOU MAKE GUM BEE
PUSH THE CAR?
LOOK.
CAN YOU MAKE GUM BEE PUSH THE
CAR?
LOOK.
HE'S PUSHING.
LET ME SHOW YOU A VIDEO.
PUSH THE CAR.
NICE!
>> SO I'LL COME BACK TO A LITTLE
BIT MORE TO MOVEMENT.
IN 2008, I DID A STUDY WHERE WE
SURVEYED FAMILIES ACROSS THE
COUNTRY AND THEIR INTEREST IN
ELECTRONIC SCREEN MEDIA AND WE
FOUND THAT ANIMATION ON
ELECTRONIC MEDIA WAS THE MOST
PREFERRED FORM OF ENTERTAINMENT
FOR THESE CHILDREN AND I THINK
THAT IS STILL TRUE TODAY.
IT CERTAINLY IS TRUE IF YOU ARE
TALKING WITH FAMILIES ABOUT
CHILDREN AND THEIR INTEREST IN
THE iPAD.
WINNIE THE POOH WAS THE MOST
APPEALING CHARACTER.
THAT HAS CHANGED SINCE 2008.
ABOUT YOU WHAT WE HAVE WITH
MEDIA AND WITH SCREENS AND
ANIMATION IS THAT NATURAL
PREDILECTION THAT MANY CHILDREN
AND ESPECIALLY I FOUND CHILDREN
WITH MINIMAL AUTISM HAVE A
PARTICULAR INTEREST IN.
SO, WE HAVE DESIGNED A SET OF
ANIMATIONS, 350 ANIMATED
GRAPHICS, VERBS AND
PREPPIZATIONS AND ADJECTIVES.
THESE ARE LANGUAGE UNITS THAT
ARE VERY DIFFICULT TO PROCESS.
THIS IS A STATIC IMAGE
REPRESENTING CLIMB TO THE IMAGE
IMAGE --
>> CLIMB.
>> SO WE CONDUCTED A NUMBER OF
STUDIES JUST LOOKING AT THE
DIFFERENCE BETWEEN LEARNING ANN:
MATED GRAPHIC VERSUS A STATIC
GRAPHIC.
WHAT WE LEARNED TYPICALLY
DEVELOPING CHILDREN THAT GRAPHIC
SYMBOLS ARE MORE READILY NOTED
DEVELOPMENTAL AFFECT.
ANIMATED SYMBOLS DO BETTER THAN
STRA ADDITIONAL STATIC SYMBOLS.
WE EVEN ADDED SOUND AS YOU HEARD
AND THAT IMPROVES NAMING OF THE
ANIMATED SYMBOLS.
IN CHILDREN WITH ASD, IN STUDIES
WE CONDUCTED, GRAPHIC SYMBOLS
FOR VERBS ARE IDENTIFIED MORE
READILY WHEN ANIMATED.
I WANT TO NOW SHARE WITH YOU
SOMETHING, A PILOT STUDY WE JUST
PUBLISHED THAT NICOLE DID.
AND WHAT WE HAVE HERE IS A
SYMBOL STRING WITH WOODY PUSHING
A CAR AND WITHOUT ANY
INSTRUCTION.
BY ADDING THE ANIMATED GRAPHIC
FOR PUSH AND OTHERS INCLUDED
DRAW AND WRITE AND BOUNCE, WE
FOUND THAT ALL OF THE
PARTICIPANTS WHO ARE ALL
MINIMALLY VERBAL PARTICIPANTS,
COMPREHENDED A SUBJECT VERB
SENTENCE STRING WITHOUT ANY
INSTRUCTION.
THAT'S A PILOT WHICH WE ARE
GOING TO LOOK AT REPLICATING.
WE ARE IN THE PROCESS OF DOING
THAT NOW.
SO WHAT DO WE STILL NEED TO DO?
DO CHILDREN WITH ASD DO AS WELL
AS TYPICAL CHILDREN WITH
ANIMATION WHEN MATCHED ONE TO
ANOTHER?
IS THERE A DEVELOPMENTAL EFFECT?
CAN WE OPTIMIZE ANIMATED SYMBOLS
BY SPEED, LOOPING ENVIRONMENTAL
SOUNDS?
JUST POINTING OUT THERE IS A LOT
OF WHO, THAT NEEDS TO BE DONE.
CAN CHILDREN WITH ASD LEARN TO
USE SELF-DIRECTED ARNIMATION?
CAN IT SERVE AS A SCAFFOLD TO
THE UNDERSTANDING USE OF STATIC
VERBS AND PREPOSITIONS SYMBOLS?
AND WHAT IS THE ROLE OF
ANIMATION FOR UNDERSTANDING
GRAPHIC SYMBOL SENTENCES?
AND AS JANICE MENTIONED IN HER
TALK, THE IMPORTANCE OF TRYING
TO TEACH GENITIVE LANGUAGE.
WE ARE REALLY ALL ABOUT TEACHING
GENITIVE LANGUAGE.
AND I THINK ANIMATION AND THE
USE OF THESE GRAPHICS MAKE A
DIFFERENCE.
WE JUST FINISHED A SCOPING
REVIEW AGAIN.
THE WE REALLY THINK THAT
ANIMATION IS AN IMPORTANT
VARIABLE IN THE FUTURE OF
WORKING WITH THIS GROUP OF
INDIVIDUALS.
I WANT TO TALK A MOMENT NOW
ABOUT AUGMENTED REALITY.
IT'S A PROMISING TECHNOLOGY.
WE HAVE CREATED SOMETHING CALLED
LEARN TO PLAY.
IT'S AN APP THAT WAS DONE IN
PARTNERSHIP WITH PTC
CORPORATION.
I WANT TO JUST SHOW THIS SO YOU
WILL SEE HOW ONE COULD
POTENTIALLY USE AUGMENTED
REALITY.
WE AILS HAD AN AGREEMENT WITH
FISHER PRICE TO USE THEIR FISHER
PRICE FARM SCENE.
[ VIDEO ]
>> RIDES, HORSE.
A BOY RIDES A HORSE.
>> SO YOU'RE LOOKING THROUGH AN
iPAD AT THE SCENE AND IT
CREATES THIS ANIMATION.
>> PIG.
OPEN.
WINDOW.
THE PIG OPENS THE WINDOW.
>> YOU SEE WHAT WE ARE TRYING TO
DO IS TEACH THE SYMBOL STRING
USING AUGMENTED REALITY.
SO IT'S MORE ACCESSIBLE IN
EDUCATION OR WILL BE DUE TO THE
MORE ACCESSIBLE TECHNOLOGICAL
ADVANCES HAPPENING CURRENTLY.
IT'S A POSSIBLE VIABLE TOOL FOR
TEACHING IMITATION PLAY AND
DIRECTION FOLLOWING.
THE GREATER ENGAGEMENT THE MORE
PARTICIPATION BY THE SUBJECTS --
THAT'S PROTY OBVIOUS.
ONE OF THE QUESTIONS WE HAVE
ASKED IS, IS IT ANY BETTER THAN
VIDEO MODELING?
IS IT BETTER THAN WHAT DAVID WAS
DESCRIBING?
THERE IS A LOT OF WORK TO BE
DONE HERE BUT THEIR HAS BEEN A
CALL TODAY FOR LOOKING INTO SOME
OF THE NEWER TECHNOLOGIES AND
THIS IS JUST AN IDEA.
WE THINK IT HAS A GREAT
POTENTIAL.
SO IS THERE A DEVELOPMENTAL
EFFECT?
WOULD THAT THEY DO AS WELL WITH
VIDEO MODELING?
HOW COULD THIS BE OPTIMIZED IN
THE FUTURE?
AND IT COULD BE A GREAT LEARNING
PLATFORM BUT WE HAVE GOT A WAYS
TO GO.
I WANT TO TALK NOW, JANICE
MENTIONED JUST IN TIME.
I WAS PART OF AN RERC BACK IN
2008-2015 AND WE STARTED TALKING
ABOUT A JIT.
IT COMES OUT OF BUSINESS
STRATEGIES TO STREAMLINE
PRODUCTION ON AN ASSEMBLY LINE
AND WE TRIED TO USE THAT
THINKING IN AAC WORK.
AND WE HAVE DONE A PAPER ON
THAT.
THAT IS NOT IMPORTANT HERE.
HOW IT APPLIES TO AAC AND
MINIMALLY VERBAL?
THE RICH TECHNOLOGY AVAILABLE
ENABLES PRACTICAL&AND EFFICIENT
JIT APPLICATIONS QUEUES AND
REMINDERS.
I'LL SHOW YOU IN A MOMENT HOW TO
DELIVER SOME SCENE QUEUES.
AND ALSO USING IT TO RAPIDLY
CREATE SCENES.
AND WE SAW SOME OF THAT IN THE
WORK THAT DAVID PRESENTED AND
ALSO THE SNAPCHAT WHICH I'M
GOING TO SHOW QUICKLY IS
SOMETHING THAT WAS ALSO DONE IN
JANICE'S LAB AT PENN STATE.
I'M ALSO GO TO SHOW YOU SOMING
CALLED QUICK PICK.
ONE PROJECT THAT WE DID AND THE
WORK WAS CARRIED OUT BY AMANDA
AT OUR SHOP.
IT WAS LOOKING AT THE USE OF THE
APPLE WATCH.
AND THE FIRST STUDY WE DID WAS
LOOKING AT WHETHER THE APPLE
WATCH, WHETHER YOU COULD PRESENT
A QUEUE, SEND A QUEUE TO A WATCH
AND WOULD IT BE INTERPRETED AS
EASILY AS IT WOULD BE ON AN
IPAD?
WE FOUND IT COULD BE.
COULD WE GET CHILDREN WITH
MINIMAL WATCHES TO BE ABLE TO
MINIMALLY VERBAL TO BE ABLE TO
WEAR THE WATCH, IN WHICH WE
COULD AND THEN WE COULD TEACH
THEM TO IDENTIFY THAT QUEUE AND
THEN LOOK AT THE WATCH AND BE
ABLE TO FOLLOW THE DIRECTIVE.
AND WE FOUND IN THAT STUDY THAT
THEY ALSO COULD.
AND THEN WE HAD A PRACTICAL
APPLICATION IN A CLASSROOM IN
THE SCHOOL SYSTEM IN UPSTATE
NEW YORK.
>> DR. COOPER: HOWARD, ARE YOU
JUST ABOUT DONE?
WE ARE ALMOST AT THE TIME LIMIT.
>> OKAY.
THIS IS AN EXAMPLE OF THAT.
I WANT TO SHOW YOU AN EXAMPLE OF
USING ARTIFICIAL INTELLIGENCE.
IN THIS CASE, THIS IS AN APP
CALLED QUICK PICK.
AND IT IS BEING DEVELOPED RIGHT
NOW WITH A GRANT FROM THE APP
FACTORY.
YOU TAKE A PICTURE AND IN FIVE
SECONDS YOU END UP WITH THIS
GRID WHICH REFLECTS THE CONTENT
WITHIN THAT PICTURE.
I WAS GOING TO MENTION A FEW
OTHER THINGS.
USING A HEADSET AND THE QUESTION
IS, ARE WE ABLE TO USE A HEADSET
AND WILL IT MAKE A DIFFERENCE?
I THINK IT IS QUESTIONABLE
WHETHER IT WILL WORK WITH
MINIMALLY VERBAL CHILDREN BUT I
THINK THAT NEEDS TO BE EXPLORED.
AND ALSO, VIRTUAL REALITY I
THINK HAS SOME PLAUSIBLE
APPLICATIONS FOR INDIVIDUALS
LEVEL 1 AUTISM.
THE OTHER THING THAT I WOULD
JUST MENTION WOULD BE THE FINAL
THING -- GREATER FOCUS ON
LANGUAGE, COMPREHENSION
INSTRUCTION IS IMPORTANT.
AND SOME OF THE WORK IS FOCUSING
ON THAT.
THE GREATER USE OF
RECOMMEMORATIVE GENERATION.
GREATER FOCUS ON GENITIVE
LANGUAGE AND LEARNING.
NOT MEMORIZING SCRIPPS.
AAC SHIFT NO LONGER EXCLUSIVE
FOCUSING ON EXEXPRESSIVE OUTPUT.
MORE PARENT TRAINING WHICH WAS
CLEAR FROM ONE OF THE TALKS.
AND AS DISCUSSED SIGNIFICANT
RESEARCH SHOWING AAC LEADS TO
INCREASE SPOKEN LANGUAGE AND
THIS PRIMARY EVIDENCE ON SYNTAX
ACQUISITION USING SOME OF THESE
VISUAL SUPPORTS.
AND THE QUESTION NOW REMAINS IN
MY LAST POINT IS, WHEN DO WE
DECIDE BECAUSE OF THE NARROW
AMOUNT OF TIME THAT WE HAVE IN
SCHOOLS AND IN AGENCIES TO
PROVIDE INTERVENTION.
HOW DO WE DECIDE HOW MUCH TIME
WE ARE GOING TO PUT INTO AAC
INTERVENTION ALONE OR ARE WE
GOING TO BE DOING AAC PLUS
SPEECH TRAINING?
AND THAT NEEDS TO BE LOOKED AT.
THANK YOU.
>> THANK YOU, HOWARD.
THAT'S GREAT.
LOTS TO THINK ABOUT.
I THINK EVERYONE IS PROVIDING
LOTS TO THINK ABOUT.
AND NOW WE HAVE ALLISON SINGER
WHO WILL GIVE US MORE TO TALK
ABOUT.
>> HI, EVERYONE.
I WANT TO ALSO SHARE MY
APPRECIATION TO THE WEBINAR
HOSTS AND EVERYONE WHO WORKED SO
HARD TO PUT THIS TOGETHER.
I KNOW IT TAKES A LOT OF WORK
AND PLANNING TO MAKE A WEBINAR
LIKE THIS LOOK EFFORTLESS.
SO THANK YOU FOR ALL THE WORK
YOU DID.
I AM THE MOM OF A 25-YEAR-OLD
DAUGHTER WITH PROFOUND AUTISM.
SHE IS MINIMALLY VERBAL.
ALSO THE PRESIDENT OF THE OPTIC
AND SCIENCE FOUNDATION WHICH IS
A FOUNDATION THAT FOCUSES ON
AUTISM RESEARCH.
I HAVE BEEN IN THIS FIELD
PROFESSIONALLY SINCE 2005.
BEFORE THAT I WAS A VOLUNTEER.
AND SINCE THAT TIME, I AGREE
THERE HAS BEEN TREMENDOUS CHANGE
IN THE FIELD, A LOT MORE
RESEARCH AND THIS HAS BEEN OF
GREAT BENEFIT TO MANY PEOPLE
WITH AUTISM, PARTICULARLY I
THINK WHAT WE SAW TODAY WAS
TREMENDOUS INCREASE IN THE
DEVELOPMENT OF ALTERNATIVE
DEVICES, THEIR USE, THEIR
ACCEPTANCE IN THE COMMUNITY.
I THINK THAT IS IN MANY WAYS HAS
BEEN DRIVEN BY THE KNOWLEDGE
THAT THEY DON'T AFFECT A
PERSON'S ABILITY TO PRODUCE
SPEECH BUT THEY ENHANCE THEIR
ABILITY TO DEVELOP SPEECH.
I THINK WE HAVE SEEN TODAY MANY
EXAMPLES OF THE DEVELOPMENT OF
TECHNOLOGY TO SUPPORT SPEECH, TO
IN SOME CASES REPLACE SPEECH.
AND I THINK WHAT WE HAVE SEEN AS
WHEN THE PRESENTERS DESCRIBED,
AN UNDERSTANDING THAT IN SOME
CASES OF AUTISM, THE ISSUE WAS
THE INABILITY TO PHYSICALLY
PRODUCE SPEECH.
SO APPROXIA.
THE IDEA GENERATION AND
RECEPTIVE LANGUAGE WAS
RELATIVELY INTACT.
SO, YOU KNOW, AGAIN, I THINK WE
HAVE A MADE TREMENDOUS STRIDES.
WE ALSO HAVE SEEN AND ACCEPTED
THERE IS HUGE HETEROGENEITY,
EVEN WITHIN THE FIELD OF
MINIMALLY VERBAL.
WHERE WE NEED TO CONTINUE TO
FOCUS OUR ENERGY AND EFFORTS IS
ON THOSE WHO ARE STILL LEFT
BEHIND.
SO PARTICULARLY THOSE -- AND
THERE ARE SOME WHO DON'T LIKE
TECHNOLOGY.
WHO FIND THE USE OF AN iPAD
AVERSIVE.
WE HAVE TO FOCUS ON WAYS TO HELP
THEM DEVELOP THEIR ABILITY TO
COMMUNICATE.
AND THEN I THINK WE ALSO HAVE TO
RECOGNIZE THAT THERE ARE SOME
INDIVIDUALS FOR WHOM APPROXIA IS
NOT THE ISSUE.
IT'S THE OPPOSITE.
INDIVIDUALS WITH ECK ALALIA.
INDIVIDUALS WHO ARE CONSTANTLY
PRODUCING UTTERANCES THAT HAVE
NO COMMUNICATIVE ATTEMPT.
SO WE KNOW THEIR ISSUE IS NOT
NECESSARILY THE INABILITY TO
FORMULATE THE WORDS.
IT'S A DIFFERENT ISSUE ALL
TOGETHER.
AND I DON'T THINK THAT WE HAVE
SEEN A LOT OF RESEARCH
FOCUSED - HELPING THOSE
INDIVIDUALS TO DEVELOP SPEECH.
I WAS PARTICULARLY INTERESTED
TODAY IN THE WORK THAT WAS
PRESENTED BY DAVID MCNAUGHTON
AND JANICE LIGHT AND THEIR USE
OF MEANINGFUL EVENTS TO HELP
GENERATE LANGUAGE.
BECAUSE WHAT WE ARE HEARING A
LOT FROM PARENTS, OF MINIMALLY
VERBAL CHILDREN, IS THAT EVEN
THE WORDS THAT THEY DO HAVE,
EVEN IN THEIR ADULT LIFE, IS
ROOTED IN THEIR PRESCHOOL YEARS.
SO A LOT OF PARENTS ARE
DESCRIBING TO US, THEY SEE A
PHENOMENON ALMOST LIKE THEIR
CHILD'S BRAIN FILLED UP WITH A
CERTAIN NUMBER OF WORDS THAT
THEY LEARNED IN PRESCHOOL AND
THERE IS NO MORE ROOM FOR
ADDITIONAL WORDS.
AND SO, I THINK TO REALLY GET AT
THAT, TO UNDERSTAND HOW THAT
HAPPENED, WE HAVE TO TALK ABOUT
PARTNERING WITH OUR -- WITH
SCIENTISTS WHO ARE LOOKING AT
BRAIN BIOLOGY, WHICH WE REALLY
HAVEN'T TALKED ABOUT TODAY.
I HOPE THAT WILL BE PART OF THE
CONVERSATION TOMORROW.
BUT WE HAVE ALSO MADE SIMILAR
STRIDES IN AUTISM RESEARCH AND
UNDERSTANDING BRAIN BIOLOGY AND
IN UNDERSTANDING GENETICS.
AND I THINK IF WE ARE GOING TO
BE ABLE TO FOCUS ON THE SEGMENT
OF THE MINIMALLY VERBAL
POPULATION THAT IS LEFT BEHIND,
THERE IS A LOT OF LEARNING WE
CAN GET FROM THE STRIDES WE HAVE
MADE FROM BIOLOGY TO TRY TO
FOCUS ON THOSE INDIVIDUALS AND
HELP THEM TO DEVELOP SOME
MOTIVATION.
>> GREAT.
I JUST WANT TO SAY, THANKS TO
EVERYBODY FOR THEIR COURAGE AND
THEIR SHARING OF THEIR THOUGHTS
AND THEIR PRESENTATIONS.
AND NOW WE WILL HAVE OPEN
DISCUSSION WHERE WE'LL HAVE
MORE --
[ MULTIPLE SPEAKERS ]
>> SARAH WALLACE WILL SPEAK
ABOUT AAC STRATEGIES FOR ADULTS
WITH APHASIA.
SARAH.
>> HI, EVERYONE.
SORRY ABOUT THAT.
I'M COMING STRAIGHT FROM CLASS
BUT I'M SO EXCITED TO BE JOINING
ALL OF YOU.
AND I'M PULLING UP MY SCREEN
HERE.
IN JUST A MOMENT.
LET ME GET MYSELF SHIFTED HERE.
I'LL TRY TO DO MY BEST TO KEEP
THIS CONCISE SO WE CAN JUST JUMP
INTO THIS VERY IMPORTANT
CONVERSATION.
HERE IS INFORMATION ABOUT ME IF
ANYONE WANTS TO REACH OUT AND
CONTACT ME ABOUT ANYTHING THAT I
TALK ABOUT TODAY.
I DO HAVE SOME QUICK DISCLOSURES
WHICH I'M HAPPY TO SHARE IN MORE
DETAIL.
BUT KNOWING THAT MY PART OF THE
PRESENTATION MAY BE A LITTLE
ROUGH TODAY, I TRIED TO SHARE
SOME QUICK TAKEAWAYS THAT IS
HELPFUL FOR ME.
SO I'M GOING TO HIT QUICKLY ON
AN IDEA AND SHARED RESOURCE
REALLY AAC HAVING A
DUAL-PURPOSE, RESTORATIVE AND
COMP PENCE TORY PURPOSES.
AND I SEE MY COAUTHOR IS HERE IN
THE AUDIENCE.
AND TECHNOLOGY CAN SUPPORT
READING COMPREHENSION.
AND WE HAVE INVESTIGATED THAT
ACROSS A COUPLE OF DIFFERENT
POPULATIONS.
AND I'M GOING TO SHARE AN
INTERVENTION FOR WORKING ON AAC
WITH PEOPLE WHO HAVE APHASIA AND
TRAUMATIC BRAIN INJURY WITH A
SPECIFIC ASPECT OF THE
INSTRUCTION THAT HELPS WITH
HOPEFULLY GENERALIZATION.
SO I'M GOING -- THIS SEEMS
STRANGE FOR THIS AUDIENCE BUT I
WANT TO HIGHLIGHT THAT PART OF
THE DEFINITION OF AAC WHICH
EMPHASIZES THAT AAC FOCUSES ON
BOTH PRODUCTION AND
COMPREHENSION IN SUPPORTING
THOSE AREAS.
AND THAT'S REALLY IMPORTANT FOR
THE POPULATION THAT I'M GOING
TALK ABOUT, PEOPLE WHO HAVE THE
LANGUAGE DISORDER OF APHASIA,
OFTEN RESULTING FROM STROKE OR
OTHER TYPE OF BRAIN INJURY THAT
EFFECTS MULTIPLE DIFFERENT AREAS
OF LANGUAGE, INCLUDING
UNDERSTANDING WHAT OTHER PEOPLE
SAY, READING, WRITING, SPEAKING.
I'M ALSO GOING TO TALK ABOUT
PEOPLE WITH TBI WHO CAN ALSO
HAVE LANGUAGE IMPAIRMENTS AND
ALSO MAY HAVE COGNITIVE DEFICITS
THAT EFFECT THEIR ABILITY TO
COMMUNICATE.
SO I SAID FIRST I'D HIT ON THIS
IDEA, AMY AND MY OTHER COLLEAGUE
HAVE WRITTEN AN ARTICLE
PROPOSING THIS IDEA THAT AAC
DOESN'T NEED TO BE JUST
COMPENSATORY IN NATURE BUT IT
CAN ALSO HAVE A RESTORATIVE
EFFECT, MEANING THAT WHEN WE
TEACH INDIVIDUALS TO USE SOME
TYPE OF ALTERNATIVE
COMMUNICATION, IT DOESN'T MEAN
THAT IT ONLY HAS TO HAVE AN
EFFECT, COMP PENCE TORY EFFECT.
IT MAY HELP IMPROVE THAT AREA OF
COMMUNICATION.
AND I THINK THIS CONCEPT IS
IMPORTANT ENOUGH TO SHARE WITH
THIS GROUP BECAUSE I THINK IT
CAN HELP INCREASE BIIN, AND HELP
US TALKING WITH CLINICIANS ABOUT
THE IMPORTANCE OF AAC.
SO I SHARE THAT RESOURCE AND
THIS CONCEPT ONLY JUST BRIEFLY
AS POTENTIALLY SOMETHING THAT
THIS GROUP MIGHT WANT TO
CONSIDER.
I'M GOING TO NEXT FOCUS ON
SPECIFIC AAC STRATEGY TO SUPPORT
READING COMPREHENSION IN
INDIVIDUALS WHO HAVE SOME
READING PROBLEMS RELATED TO
LANGUAGE OR COGNITION.
WE KNOW THAT READING IS REALLY
IMPORTANT.
WE NEED TO READ TO FUNCTION IN
EVERYDAY LIFE.
IT HAS SAFETIES CONSEQUENCES.
IT HAS CONSEQUENCES FOR THE JOY
AND PLEASURE WE ARE ABLE TO
RECEIVE IN LIFE.
IT HAS CONSEQUENCES FOR BUILDING
RELATIONSHIPS.
AND ALSO SHARING INFORMATION.
MY COLLEAGUES AND I HAVE DONE A
SERIES OF STUDIES FOCUSING ON
TECHNOLOGY CALLED
SPEECH-TO-TEXT, WHICH PRETTY
SIMPLY TAKES WRITTEN INFORMATION
THROUGH VARIOUS TYPES OF
PROCESSES DEPENDING ON THE
TECHNOLOGY.
IT WILL ALLOW THAT WRITTEN TEXT
TO BE UPLOADED ANDAGE LIES THE
TEXT AND PRODUCE A SIMULTANEOUS
WRITTEN AND SPOKEN OUTPUT.
THIS IS THOUGHT TO HELP PEOPLE
WHO HAVE LANGUAGE OR COGNITIVE
IMPAIRMENTS BECAUSE IT REDUCES
SOME OF THE DEMANDS.
IT'S ALSO BY THE WAY, ENDORSED
BY INDIVIDUALS WITH SOME OF
THESE CHALLENGES BECAUSE IT
INCREASES INDEPENDENCE AND IT
MEANS THEY DON'T HAVE TO RELY ON
OTHERS TO MODIFY THEIR
MATERIALS.
TO MAKE THEM EASIER FOR THEM TO
READ.
AND THEN ALSO IT CAN BE
INDIVIDUALIZED TO THE PERSON'S
NEEDS.
WE CAN ADJUST THE VOICE, THE
RATE OF SPEECH, HIGHLIGHTING IS
INCLUDED.
AND THOSE THINGS TEND TO BE
THOUGHT TO BE BENEFITS FOR
PEOPLE.
HERE IS A QUICK VIDEO THAT SHOWS
AN EXAMPLE.
[ VIDEO ]
THIS IS IS IT GIVES YOU AN IDEA
OF WHAT THIS MIGHT LOOK LIKE.
AND SOME OF THE MATERIALS THAT
WE HAVE USED IN OUR RESEARCH
STUDIES WHICH ARE REAL STORIES
FROM SMALL TOWN PAPERS.
HERE IS LARGE SELECTION OF SOME
OF THE RESEARCH THAT WE HAVE
DONE AND SOME OF THE FINDINGS.
THE SUMMARY HERE IS THAT FOR
SOME PEOPLE WITH APHASIA, THEIR
READING COMPREHENSION IMPROVES
WHEN THEY HAVE ACCESS TO THIS
TECHNOLOGY.
AND MORE OFTEN THAN NOT, MORE
OFTEN THAN THE CHANGES IN
COMPREHENSION, WE SEE CHANGES IN
THE SPEED AT WHICH PEOPLE ARE
ABLE TO READ THE INFORMATION.
WHICH IS ADDRESSING A MAJOR
COMPLAINT THAT PEOPLE WITH
APHASIA SHARED WITH US.
WHICH IS THAT READING IS HARDER
FOR THEM TO DO BECAUSE THEY
CAN'T DO IT AS FAST AS THEY USED
TO.
WHEN WE CAN INCREASE THEIR SPEED
BUT NOT DECREASE COMPREHENSION,
IT SEEMS LIKE WE ARE DOING
SOMETHING THAT MIGHT HELP WITH
THEIR PARTICIPATION.
WE ARE NOW WORKING IN THE AREAS
OF HAVING PEOPLE READ ENTIRE
BOOKS USING THIS TECHNOLOGY.
WE REALLY MOVED AWAY FROM
SENTENCE-LEVEL INFORMATION.
WE TRY TO MAKE THIS FUNCTIONAL.
WE CONSIDER PEOPLE'S
PREFERENCES.
THEY LIKE THIS TECHNOLOGY.
NOT EVERYONE BUT A LOT OF
PEOPLE.
THEY LIKE IT WHEN THE RATE IS
THE ABOUT IN THE MEDIUM LEVEL
AND THEY LIKE WHEN THERE IS SOME
HIGHLIGHTING AVAILABLE.
ANOTHER COLLEAGUE OF MINE WHO
HAS DONE SOME WORK ON A SIMILAR
TOPIC, IT.
BI, SHE AND HER COLLEAGUES HAVE
FOUND SIMILAR DIFFERENCES OR
SIMILAR RESULTS WHERE PEOPLE
TEND NOT HAVE A. HAVE A HUGE
DIFFERENCE IN COMPREHENSION BUT
THEY ARE FASTER.
THIS ADDRESSES AGAIN A PROBLEM
PEOPLE WITH TBI EXPRESS.
THEY ALSO EXPRESS A PREFERENCE
FOR THIS TYPE OF DUAL MODALITY.
SO OUR IMPLICATIONS, THERE IS
MORE THAT NEEDS TO BE DONE IN
THIS AREA.
BUT EFFICIENCY SEEMS TO BE A
REALLY WORTHWHILE OUTCOME FOR
SOME OF THIS WORK.
AND TO CAREFULLY CONSIDER
PEOPLE'S PREFERENCES AND ALSO
THE DIFFERENT TYPES OF FEATURES.
I'M NEXT GOING TO TALK ABOUT AN
INTERVENTION TO SUPPORT SPOKEN
EXPRESSION.
CALL THIS MULTIMODAL
COMMUNICATION TREATMENT.
I DIDN'T DESIGN IT.
MY COLLEAGUE MARY PURDY DID.
I HAVE DONE SOME WORK IN THIS
AREA.
AND IT'S MEANT TO ADDRESS THIS
IDEA ALTHOUGH WE TEACH THESE
MODALITIES TO COMPENSATE FOR
SPOKEN LANGUAGE IMPAIRMENTS,
THEY DON'T ALWAYS USE THOSE TO
REPAIR COMMUNICATION BREAKDOWN.
SO THE HYPOTHESIS IS THAT
INSTEAD WE WILL TEACH THE
MODALITIES.
IT COULD BE A COUPLE.
IT COULD BE A LOT.
WE'LL TEACH THESE MODALITIES
TOGETHER TO CREATE A COHESIVE
MULTIMODAL REPRESENTATION IN THE
PERSON'S BRAIN.
AND HAVE THEM BETTER BE ABLE TO
SWITCH TO ANOTHER MODALITY TO
REPAIR IN REAL-LIFE ACTIVITIES.
MY STUDENTS AND MYSELF HAVE
EXAMINED THIS ACROSS A NUMBER OF
POPULATIONS, INCLUDING PEOPLE
WITH TRAUMATIC BRAIN INJURY,
PEOPLE WITH APHASIA AND
PRIMARY-PROGRESSIVE APHASIA.
THE TREATMENT LOOKS SOMETHING
LIKE THIS.
THE TARGET IS SHOWN TO THE
CLIENT.
WE ASK THE PERSON TO -- MIGHT
MODEL ALL THE MODALITIES.
WE HAVE THEM IMITATE.
WE GIVE FEEDBACK.
WE GIVE SOME TYPE OF QUEUING.
BUT REALLY THE KEY HERE IS THAT
WE ARE PRACTICING ALL THESE
MODALITIES IN A COHESIVE WAY.
WE ALSO PROVIDE A QUEUE SHEET
LIKE THE ONE PICKED HERE THAT
HELPS THE INDIVIDUAL KNOW THE
TYPES OF MODALITIES THAT ARE
ACCESSIBLE TO THEM.
WE MODIFIED THIS TREATMENT TO DO
OTHER TYPES OF QUEUING WHERE WE
DIRECTLY SAY, WHAT WOULD YOU DO
IF SOMEONE DIDN'T UNDERSTAND?
AND TRY TO QUEUE THAT WAY.
IN TERMS OF THE CONCLUSIONS, IT
SEEMS LIKE THERE IS SOMETHING
GOING ON HERE THAT HELPS WITH
THE IDEA OF RESOLVING
BREAKDOWNS.
WE HAD GOOD SUCCESS.
BUT WHAT WE HAVEN'T SEEN YET IS
HOW TO MOVE THIS TO A DISCOURSE
LEVEL AND WE ARE WORKING MORE ON
THIS SPECIFICALLY HAVING PEOPLE
BE ABLE TO DO THIS IN
HIGHER-LEVEL LANGUAGE TASKS.
AND THAT CAN HOPEFULLY START TO
MOVE US IN THE DIRECTION OF
GENERALIZATION AND REAL WORLD.
WE ARE ALSO LOOKING AT SOME WAYS
OF DOING THIS OVER TELEPRACTICE
AND ALSO COMBINING SYMANTEC
INTERVENTIONS.
SO I TRIED TO MOVE THROUGH THIS
FAIRLY QUICKLY AND HOPEFULLY
GIVE YOU GOOD IDEAS.
AAC CAN HAVE A DUAL-PURPOSE.
TECHNOLOGY CAN BE USED TO
SUPPORT READING COMPREHENSION
AND READING COMPREHENSION IS
REALLY IMPORTANT.
AND PEOPLE WITH APHASIA AND
TRAUMATIC BRAIN INJURY CAN
BENEFIT FOR INSTRUCTIONS IN HOW
TO RESOLVE COMMUNICATION
BREAKDOWNS BY SWITCHING TO A NEW
MODALITY.
SO, I KNOW WE ARE HAVING
DISCUSSION SO NOT REALLY
QUESTIONS.
MY CONTACT INFORMATION AND I
JUST ALWAYS HAVE TO RECOGNIZE
ALL MY COLLABORATORS AND
STUDENTS WHO DO A LOT OF THE
WORK WITH ME.
SO THANK YOU ALL FOR SQUEEZING
ME IN HERE AT THE END.
I SUPER APPRECIATE IT.
AND I'M REALLY LOOKING FORWARD
TO THE DISCUSSION THAT WE ARE
GOING TO HAVE.
>> THANK YOU, SARAH.
THANK YOU FOR RUSHING BACK FROM
YOUR CLASS.
I KNOW THAT WAS -- IT HAD TO BE
JUST ADDED STRESS TO --
>> NO WORRIES AND THE STUDENTS
ENJOYED A FEW MINUTES EXTRA FREE
TODAY.
SO NO COMPLAINTS ON THEIR END.
>> OKAY.
SO WHAT A GREAT AFTERNOON THIS
HAS BEEN.
SO LET ME JUST SAY A WORD ABOUT
THE DISCUSSION.
SO WE HAVE -- YOU HEARD FROM
SPEAKERS.
SO THEY HAVE GOTTEN TO SAY THEIR
PIECE.
THERE IS ANOTHER GROUP OF
INDIVIDUALS WHO WE INVITED WHO
ARE ON THE CALL RIGHT NOW.
AND WE'RE GOING TO HAVE THEM
RAISE THEIR ELECTRONIC HAND IF
THEY WOULD LIKE TO MAKE A
COMMENT.
THOSE ARE INVITED PARTICIPANTS.
AND THEN WE HAVE ALL OF THE
FOLKS WHO ARE ON THE WEBINAR AND
HAVE BEEN PERHAPS SENDING IN
QUESTIONS OR COMMENTS.
I HAVE A FEELING WE WON'T BE
ABLE TO GET TO EVERYBODY'S
QUESTIONS BUT I THINK WE WOULD
LIKE TO START WITH OUR INVITED
PARTICIPANTS FIRST.
AND SO, IF ANY OF YOU WHO ARE ON
THE ZOOM WOULD LIKE TO GO FIRST.
JOHN YOU HAVE ALREADY HAD A
CHANCE.
LET ME -- WE'LL CALL ON YOU IN
JUST A MINUTE.
WE'LL SEE IF THERE IS ANYONE
ELSE WHO WAS INVITED BUT HAS NOT
YET HAD A CHANCE TO SPEAK.
WE'LL LOOK TO SEE IF ANYBODY HAS
THEIR HAND UP.
RIGHT NOW I DON'T SEE ANYTHING.
>> MY HAND UP IS NOT WORKING.
BUT I WOULD LIKE TO RAISE MY
HAND AND HAVE YOU CALL ON ME IF
YOU DON'T MIND.
>> STEPHEN, OKAY.
HE DIDN'T HAVE A CHANCE TO TALK
TODAY.
SO YES, GO AHEAD.
>> FIRST OFF, I JUST WANT TO
CONGRATULATE EVERYBODY.
WHAT A DIVERSE AND WONDERFUL
GROUP OF PEOPLE WITH SO MANY
DIFFERENT PERSPECTIVES.
FOR TODAY, ONE THING THAT REALLY
STRUCK ME WAS ONE OF THE
CHALLENGES IS THE SPEED OF
ACCESS.
THINK ABOUT THE INTERVENTION
STUDIES WE SAY AND SOME OF THE
INTERFACES AND SO ON.
ONE OF THE THINGS IN MY CLINICAL
EXPERIENCE IS THAT ESPECIALLY
WITH AUTISM IS THE TIME IT TAKES
AND THE EFFORT IT TAKES TO EVEN
ACTIVATE THE DEVICE AND
COMMUNICATE IS A REAL CHALLENGE.
AND I JUST WANTED TO THROW IT
OUT THERE.
I THINK THERE WERE SOME GREAT
IDEAS ABOUT HOW TO IMPROVE THAT.
CERTAINLY DR. LIGHT TALKED ABOUT
REARRANGING THE SCREEN IN A WAY
THAT IS MORE EFFICIENT WHICH
RESONATED WITH ME.
I WOULD LOVE TO HEAR FROM FOLKS.
AND ALSO FROM KELLY AND THE
ADVOCATES, SELF ADVOCATES HOW
THEY FEEL ABOUT THAT
PARTICULARLY.
>> THANK YOU, STEPHEN.
>> LET'S HEAR FROM JOHN.
I THINK JOHN HAD A COMMENT.
>> JOHN ROBISON: WITH RESPECT TO
MY OPENING COMMENT, AFTER
LISTENING TO THE PRESENTATIONS,
I SAW, I HEARD, A LOT OF
DESCRIPTIONS OF GOOD USEFUL
WORK.
BUT IT IS ALL THE SAME OLD WORK
WITH ONLY ONE OR TWO EXCEPTIONS.
AND I THINK THAT IT IS REALLY
IMPORTANT THE NIH RECOGNIZE
THAT.
AND IN SAYING THAT, I DO NOT IN
ANY WAY MEAN TO DISMISS THE
EFFORTS AND VALUE OF THE
PRESENTERS TODAY AND ALL THE
OTHER PEOPLE WHO WORK IN THESE
FIELDS DOING WHAT THEY WERE
TRAINED TO DO.
BUT WHAT I HEAR OVER AND OVER
THROUGH THIS IS THE TREMENDOUS
FRUSTRATION FOR AUTISTIC PEOPLE
ATTEMPTING TO USE COMMUNICATION
TOOLS WITH LIMITED SUCCESS.
TOOLS ARE LIMITED.
WE ALL AGREE.
AND I HEAR FURTHER DEVELOPMENTS
OF COMMUNICATION PATHWAYS WHICH
OVER THE LAST TWO DECADES HAVE
ALREADY KIND OF RUN THEIR
COURSE.
AND AT THE SAME TIME, WE HAVE
SEEN THROUGH AI DEVELOPMENTS AND
THE DEVELOPMENTS -- WE HEARD A
TOUCH OF THAT IN NEURAL GUIDANCE
OF COMMUNICATION DEVICES IN ONE
OF THE PRESENTATIONS.
THAT SHOULD BE A PRINCIPLE FOCUS
IN YOUR AGENCY.
IF THE GOAL IS TO ADDRESS DEAF,
ON THE INCOMING SIDE AND
DISABILITY TO EXPRESS IDEAS ON
THE OUTGOING SIDE, THE ANSWER TO
THAT IS NOT IN MEDICINE.
IT IS IN EMERGENT TECHNOLOGY.
AND I REALLY THINK THAT THAT IS
A FUNDAMENTAL OVERSIGHT THAT HAS
COME FROM THE AGENCY BEING
STAFFED BY PEOPLE WITH MEDICAL
TRAINING AND THAT IS NOT
NECESSARILY THE FIRST PLACE THEY
TURN.
I DON'T MEAN ANY DISRESPECT OR
TO DISMISS THE VALUE OF MEDICINE
IN ANY WAY.
BUT I THINK THAT WE ARE AT A
POINT IN COMMUNICATION
TECHNOLOGY WHERE MEDICINE MUST
STAND SIDE-BY-SIDE ON AN EQUAL
FOOTING WITH TECHNOLOGY.
>> HELEN TAGER-FLUSBERG WE HEAR
YOU.
AND THE KINDS OF PARTNERSHIPS
YOU'RE THINKING ABOUT WILL BE
WHAT I HOPE WILL SEE COMING IN
THE NEXT DECADE.
LET ME CALL ON LEN APADUTO FOR
HIS COMMENT.
>> FIRST THIS HAS BEEN A GREAT
SESSION SO FAR.
SO THANK YOU FOR INVITING ME.
I REALLY LEARNED A LOT.
ONE COMMENT I'D LIKE TO MAKE AND
THIS COMES FROM WORK WE ARE
DOING RECENTLY, NOT ABOUT
COMMUNICATION BUT ABOUT SOCIAL
PARTICIPATION.
AND ONE OF THE THINGS THAT WE
FOCUSED ON HOW WE ENHANCE THE
COMMUNICATION SKILLS AND
OPPORTUNITIES FOR PEOPLE THAT
ARE MINIMALLY VERBAL.
BUT I THINK WE ALSO NEED TO
REMEMBER THAT WE NEED TO TRAIN
THE REST OF US IN TERMS OF HOW
WE PARTICIPATE WITH PEOPLE THAT
ARE USING AUGMENTIVE DEVICES.
WE ARE NOT VERY GOOD AT WAITING,
AT LISTENING, AT SUPPORTING
PARTICIPATION OF EVERYONE.
EACH WHEN WE ARE IN THE FIELD
AND WE FOCUS ON INCLUSION.
SO I THINK THERE IS THAT NEXT
LEVEL OF TRAINING THE REST OF US
IN EMPLOYMENT SETTINGS AND
EDUCATIONAL SETTINGS SO WE CAN
HELP SUPPORT NOT IN TEACHING
SKILLS BUT GIVING PEOPLE THE
OPPORTUNITY TO HAVE THEIR VOICES
HEARD IN ONE WAY OR ANOTHER.
>> CONNIE KAS AN: SO IMPORTANT.
>> DR. COOPER: WE TALKED ABOUT
EVERYBODY SHOWING THEIR CAMERA
SO FOLKS CAN SEE THE
PARTICIPANTS AND WHO IS ASKING
THE QUESTIONS.
>> I THINK AMY DI.
TZ HAS HER HAND UP.
>> AMY.
THANK YOU FOR INVITING ME.
IT'S NICE TO IMMERS PLEASE IN
SOMETHING COMPLETELY DIFFERENT
THAN NORMAL.
AND ALSO BEING ABLE TO CONNECT
THE DOTS VERY EASILY AND TO
UNDERSTAND THE PAINS OF THE
RESEARCHERS IN THE ROOM AND ALSO
TO CONNECT TO THE OTHER
STAKEHOLDERS IN THE ROOM.
SO THANK YOU.
GOING BACK TO GRANT AND HIS VERY
ELOQUENT OPENING.
IT WAS A GREAT WAY TO OPEN THE
AFTERNOON.
I WAS REALLY STRUCK BY THE
COMMENT AND THEN THE REPEATED
COMMENTS ABOUT THE CHRONIC
STRESS AND EVEN THE STATEMENT OF
THE TRAUMA.
IT GETS ME TEARED UP NOW JUST
RETHINKING THAT FROM HAVING A
COMMUNICATION DISORDER.
SOME OF MY RECENT WORK HAS BEEN
MOVING INTO WORKING WITH PEOPLE
WHO HAVE APHASIA ON BUILDING
RESILIENCE AND COPING SKILLS
THROUGH ADAPTIVE YOGA.
AND THROUGH SOME OF THAT WORK, I
HAVE JUST LEARNED A WHOLE NEW
SIDE OF THAT REHABILITATION
JOURNEY.
AND IT'S REALLY BEEN WONDERFUL
TO EXPERIENCE THAT SIDE OF THE
JOURNEY.
AND SO I'M REALLY GLAD THAT CAME
UP HERE TODAY.
AND I CAN'T SAY ANY BETTER THAN
GRANT AND THE OTHER STAKEHOLDERS
MENTIONED ON TOP OF THE FACT HOW
IMPORTANT IT IS TO WORK WITH THE
STAKEHOLDERS.
I'M GLAD TO HEAR THAT IS
HAPPENING.
AND SO JUST IN THE WORK OR
JOURNEY I HAVE BEEN DOING, JUST
WHAT I HAVE LEARNED IS THAT
OTHER -- NO MATTER HOW YOU DO
IT, FINDING A WAY TO -- WHETHER
IT'S IN YOUR CLINICAL PRACTICE,
IF YOU'RE AN SLP OR WHETHER
YOU'RE A PARENT OR A SIBLING OR
WAYOUR ROLE IS -- OR YOU'RE A
PERSON WITH AUTISM, FINDING A
WAY TO DEAL WITH THAT WELLNESS
SIDE IS SO IMPORTANT.
WHAT I HAVE LEARNED IN MY
RESEARCH JOURNEY IN THE LAST 5-7
YEARS, IS THAT FINDING A WAY TO
DEAL WITH THAT IS IT HELPED THE
PATIENTS WITH THE APHASIA I
WORKED WITH, THEY FEEL IT HELPS
OPEN UP THEIR LANGUAGE SYSTEM.
AND THAT THE WORDS COME OUT
EASIER FOR THEM.
THAT IT JUST OPENS UP LIKE A
BACKDOOR FOR THE LANGUAGE.
SO NOT ONLY I ARE THEY BETTER
LIKE FROM A WELLNESS
PERSPECTIVE, BUT IT MAKES THE
LANGUAGE EASIER.
IT'S A TWO FER.
THEIR LANGUAGE GETS BETTER --
THEY ARE BETTER FOR THEIR
WELLNESS FROM A HEALTH
PERSPECTIVE AND IT ALSO HELPS
THEIR LANGUAGE.
SO WE'RE ACTUALLY LOOKING AT
WAYS TO INCORPORATE YOGA INTO
THERAPY SIXESES FOR THAT REASON.
SO THAT'S JUST A THOUGHT THERE.
SO I'M PUTTING ON MY AAC HAT NOW
AND I'M GOING -- I THINK IT WAS
SHANE WHO SAID TOWARDS THE
END -- I DON'T WANT TO MISQUOTE
HIM BUT I THINK HE SAID, YOU
KNOW, WE HAVE TO THINK ABOUT --
WE ONLY HAVE SO MUCH TIME.
SO DO WE HAVE TO DO AAC
TREATMENT ALONE?
OR CONSIDER AAC PLUS SPEECH
TRAINING?
SO I THINK SARAH MENTIONED IT
VERY NICELY IN HER QUICK RUSH
FROM CLASS ABOUT AAC CAN BE A
DUAL-PURPOSE TOOL.
IN SOME OF MY OTHER WORK IN AAC
WITH PEOPLE WHO HAVE APHASIA IS
THAT WE LEARNED THAT WE CAN HELP
THEM LEARN HOW THO USE IT AS A
DUAL-PURPOSE TOOL.
WE CAN TEACH THEM.
WE HAVE TO TEACH THEM HOW TO USE
THIS TOOL AND WE CAN TEACH THEM
HOW TO USE IT AS A COMMUNICATION
TOOL.
AND PEOPLE ABOUT AUTISM ARE
DOING IT INDEPENDENTLY SELF
QUEUING THEM AND ALSO HEARD
THROUGH OTHER RESEARCH WE CAN
TEACH THEM HOW TO SELF QUEUE.
I THINK WE CAN GET A TWO FER
THERE AS WELL.
MAYBE WITH PEOPLE WHO HAVE
AUTISM, WE CAN TEACH THEM THE
SAME THING.
IT'S NOT A EITHER-OR.
IT'S NOT THIS, YOU KNOW, WE HAVE
TO HAVE THIS MUTUALLY EXCLUSIVE
DECISION HERE TO MAKE ABOUT
HAVING TRADITIONAL THERAPY
AND/OR AAC.
IT CAN BE A TWO FER THERE AS
WELL.
SO THOSE WERE MY BIG TAKEAWAYS
TODAY.
>> THANK YOU, AMY.
JUDITH YOUR TURN.
>> I THINK AMANDA WAS NEXT.
>> THANK YOU.
SO I'M AMANDA.
SPEECH PATHOLOGIST AND RESEARCH
IN AUSTRALIA IN AUSTRALIA.
AND I WORK IN A
RESEARCH-EMBEDDED CLINIC WHERE
WE FOCUS ON CHILDREN THAT ARE
MINIMALLY VERBAL OR
NON-SPEAKING.
AND I GUESS ONE OF THE THINGS
THAT HAS BEEN A FANTASTIC
PRESENTATION THIS MORNING.
I LEARNED A LOT AND REALLY
INTERESTING INNOVATIONS THAT ARE
HAPPENING.
ONE OF THE CHALLENGES WE FACE IS
AROUND 80-90% OF THE KIDS WE SEE
SPEAK ENGLISH AS A SECOND
LANGUAGE OR DO NOT SPEAK
ENGLISH.
SO WE USE A LOT OF INTERPRETERS.
AND I GUESS THAT IS ONE AREA WE
FIND VERY CHALLENGING.
SORT OF WORKING WITH FAMILIES
AND THINKING ABOUT WAYS THAT WE
CAN ADAPT INTERVENTIONS FOR THIS
GROUP BECAUSE WE HAVE GOT A
GROUP THAT ARE BEING LEFT
BEHIND.
BUT THAT GROUP IS EVEN FURTHER
LEFT BEHIND IN MY VIEW IN TERMS
OF MEETING THEIR NIDES.
SO JUST A COMMENT ABOUT THAT.
>> THANK YOU.
SUCH AN IMPORTANT POINT AND ONE
THAT IS GROWING OVER TIME AS
OPPOSED TO DIMINISHING.
CAITLYN 689 WE'D LOVE TO HEAR
FROM YOU.
ED.
>> APOLOGIES FOR DRIVING
WHILE -- IT'S BEEN A WONDERFUL
MOMENT TO LISTEN TO EVERYONE'S
STORIES AND I PROMISE I'LL BE IN
FRONT OF A COMPUTER TOMORROW.
I'M A RESEARCHER AT THE
UNIVERSITY OF SOUTH CAROLINA AND
I'M A COGNITIVE NEUROSCIENTIST.
SO IT WAS VERY GRADUAL ABOUT THE
CONVERSATION ABOUT THINKING
THROUGH BIOLOGICAL CAPACITY THAT
ALICE MENTIONS.
I WANTED TO POSE A QUESTION TO
THE GROUP THAT SEEMED TO RING IN
EVERYONE'S CONVERSATION ABOUT
THIS IDEA OF HETEROGENEITY AND.
DON'T NECESSARILY THINK WE HAVE
GREAT STRATEGIES FOR HOW WE WILL
BE ADDRESSING HETEROGENEITY.
AND THIS IS GOING TO COME INTO
PLAY IN A LOT OF DIFFERENT AREAS
IN TERMS OF CAPACITY OR THE
BIOLOGICAL FOUNDATIONS FOR
COMMUNICATION IN DIFFERENT WAYS.
BUT IT ALSO IS GOING TO COME
INTO PLAY IN TERMS OF WHAT
PARENTS AND INDIVIDUALS MIGHT
SEE AS THEIR LONG-TERM GOALS AND
WHAT INCREMENTAL PROGRESS LOOKS
LIKE.
SO UNDERSTANDING THAT MAYBE
MAKING A REQUEST SUCCESSFULLY IS
THAT LIKE -- FANTASTIC
ACHIEVEMENT IN A YEAR.
AND I THINK THAT IS SOMETHING
THAT WE MIGHT COME TO ADDRESS
TOMORROW IN SOME OF OUR
CONVERSATIONS.
I THINK IT WILL BE REALLY
HELPFUL TO HAVE SOME -- AND MAY
BE OFF SHOOT CONVERSATIONS ABOUT
HOW DO WE ADDRESS THAT?
AND AT WHAT LEVEL ARE WE GOING
AFTER SOME OF THESE PIECES?
IS IT THAT WE TRY TO TAKE OUR
HET GENIUS POPULATION AND NEEDS
AND TRY TO DEVELOP AND
UNDERSTAND THESE PROCESSES FOR
DIFFERENT GROUPS OF KIDS?
BUT IF WE ARE ALL SPREAD ACROSS
THE GLOBE, MAYBE THAT'S NOT AS
EFFECTIVE.
I DON'T KNOW.
I DEFINITELY DON'T HAVE THE
SOLUTION BUT I KNOW IT'S
SOMETHING THAT IS BECOMING AN
INCREASING NEED AND WOULD LOVE
TO HEAR OTHER PERSPECTIVES ON IT
IT.
>> THANK YOU.
CAITLYN, PERHAPS THAT'S A TOPIC
WE CAN CIRCLE BACK TO TOMORROW.
WE DISCUSS RESEARCH DESIGNS AND
METHODS THAT WE CAN USE FOR
INTERVENTION STUDIES.
BECAUSE I THINK THAT IS AT THE
HEART OF THE ISSUE.
NANCY BRADY.
I'M GLAD TO SEE YOU WERE FINALLY
ABLE TO RAISE YOUR HAND.
WE'D LOVE TO HEAR YOUR COMMENTS.
>> NOT THE BEST TECH PERSON
HERE, BUT GLAD I GOT IT WORKING
TOO.
SO, I JUST HAD A COUPLE OF QUICK
COMMENTS ON THESE REALLY, REALLY
INTERESTING PRESENTATIONS.
ONE IS I WANT TO REITERATE WHAT
TWO OF THE PARENTS COMMENTED
ABOUT.
NOT EVERY PERSON WHO IS IN THIS
ROLE TIKES GRAPHIC-BASED AAC.
SO ACKNOWLEDGING THAT THE ROLE
OF NON GRAPHIC-BASED AND USING
MOTOR BEHAVIORS AND GESTURES AND
THERE WAS A LOT OF WORK ON SIGN
THAT GOT DROPPED ONCE WE
DISCOVERED THE POWER FOR MOST
PEOPLE FOR GRAPHIC-BASED AAC.
BUT FOR THOSE THAT HAVE BEEN
KIND OF LEFT BEHIND, I THINK WE
NEED TO RETHINK THOSE AREAS.
AND THEN THE SECOND POINT WAS TO
MAKE A PLUG FOR SECONDARY DATA
ANALYSIS.
ONE OF THE POINTS THAT JANICE
LIGHT MADE IN HER PRESENTATION
WAS THE FINDING ABOUT THE
DISCREPANT SERVICES FOR BLACK
STUDENTS AND THAT CAME FROM A
SECONDARY ANALYSIS OF DATA THAT
WE COLLECTED AND CONTRIBUTED TO
THE END OUR DATABASE.
SO IT WAS GREAT TO HAVE HER
STUDENT GO BACK AND LOOK AT
THAT.
WE DIDN'T FIND THAT DISCREPANT
FINDING.
SO THOSE OF US WHO ARE LOOKING
FOR A PROJECT FOR STUDENTS TO
DO, I JUST THOUGHT THAT WAS A
GREAT USE OF EXISTING DATA.
JUST WANTED TO MAKE THAT PLUG.
AND NOW I KNOW HOW TO LOWER MY
HAND.
>> I SEE -- I THINK THAT'S A
REALLY GOOD POINT.
LET'S USE WHAT WE HAVE GOT IF WE
CAN.
DENISE?
YOU HAVE YOUR HAND UP.
DENISE LOMBARDI.
>> I DO.
THANK YOU.
SO I WANTED TO MAKE A COMMENT.
I DON'T AGREE THAT SOME OF THESE
INTERVENTIONS HAVE RUN THEIR
COURSE.
I THINK WE DON'T HAVE ENOUGH
DATA AND EVIDENCE YET.
AND ESPECIALLY IF YOU GO BACK TO
THE POINT THATAL VON SINGER
BROUGHT UP ABOUT BIOLOGY, WE
DON'T REALLY KNOW WHAT IS
CAUSING THESE ISSUES.
WHY IS IT THAT 30% OF PEOPLE IN
THE AUTISM SPECTRUM, INCLUDING
MY SON, DON'T GAIN MEANINGFUL
SPEECH, EXEXPRESSIVE LANGUAGE?
AND I DON'T KNOW HOW YOU
EFFECTIVELY REMEDIATE THAT THE
WITHOUT BETTER UNDERSTANDING OF
THE BIOLOGY.
AND I DON'T THINK THAT YOU CAN
JUST SAY, THESE INTERVENTIONS
DON'T WORK BECAUSE -- WE DON'T
KNOW WHAT INTERVENTION IS GOING
TO WORK ON WHAT SPECIFIC
POPULATION BECAUSE WE HAVE SUCH
A -- JUST SUCH A WIDE
PRESENTATION IN THE WORLD OF THE
AUTISM SPECTRUM DISORDER.
I PERSONALLY WOULD LOVE TO SEE
MORE RESEARCH DIRECTED TOWARDS
WHAT IS THE BIOLOGY?
I CAN ONLY JUST EXPRESS MY --
OUR EXPERIENCES WITH OUR SON
WHEN HE WAS YOUNG.
HE, AT A VERY EARLY AGE HAD TO,
I BELIEVE -- HE HAD TO TUNE ME
OUT BECAUSE I THINK -- AND TUNE
OUT THE LARGER WORLD BECAUSE IT
WAS TOO MUCH FOR HIM TO PROCESS.
THERE WAS AN INCIDENT WHERE MY
HUSBAND CAME IN AND I'M HOLDING
MY SON AS AN INFANT.
AND I SAID TO MY HUSBAND VERY,
VERY, AT A VERY LOW VOICE, I
SAID IF I START TALKING TO HIM
IN A NORMAL VOICE, HE'S GOING TO
START CRYING.
THIS WAS WELL BEFORE HE GOT AN
AUTISM DIAGNOSIS.
AND SURE ENOUGH, I DID MY
EXPERIMENT, MY SON STARTED
CRYING.
I SHUT UP AND MY SON CALMED
DOWN.
SO WHAT WAS IT AT THAT STAGE OF
HIS DEVELOPMENT THAT -- WHAT WAS
CAUSING THAT?
IT HAD TO BE PAIN, RIGHT?
IT HAD TO BE PAINFUL FOR HIM.
AND HE WAS COMMUNICATING THAT
VIA CRYING.
SO, I THINK WE STILL NEED TO DO
A TREMENDOUS AMOUNT OF
EXPLORATION IN TERMS OF WHAT IS
HAPPENING AT THE INFANCY STAGE
SO THAT CHILDREN LIKE MINE
AREN'T STUFFERRING.
BECAUSE THAT IS WHAT IT IS AT
THE END OF THE DAY.
WE HAVE BEEN ABLE TO FIND SOME
COPING MECHANISMS OVER THE LAST
19 YEARS, BUT I THINK IT'S
IMPORTANT WE DON'T FORGET ABOUT
CAUSE AND WHAT IS GOING TO BE
BENEFICIAL FOR EACH OF THESE
VERY UNIQUE PROFILES.
THANK YOU.
>> I AGREE.
AND THERE IS SOME WORK GOING ON
NOW ABOUT BRINGING TO BIOLOGY,
BRINGING BEHAVIOR TOGETHER.
BUT I THINK WE ARE AT SUCH EARLY
STAGES.
AND YOU'RE RIGHT.
WE DON'T KNOW AS MUCH AS WE
SHOULD KNOW.
SO THANK YOU FOR THAT.
JUDITH?
>> I THINK MARY ANN HAD HER HAND
UP AND THEN GIACOM-O AND THEN
MARY ANN.
>> SO THANK YOU VERY MUCH FOR
THIS WONDERFUL DAY OF VERY
STIMULATING DISCUSSION ABOUT
WHERE WE GO.
AND I JUST WANT TO HIGHLIGHT ONE
THING ABOUT THE HISTORY OF ALL
OF THIS.
AND THAT IS THAT INDIVIDUALS WHO
ARE ADULTS TODAY DID NOT HAVE
ACCESS TO WHAT WE HAVE TODAY IN
TERMS OF TECHNOLOGY, IN TERMS OF
INTERVENTION ADVANCES.
WHAT WE KNOW ABOUT AAC
ET CETERA.
WE REALLY DON'T HAVE THE DATA AS
I BELIEVE IT WAS DENISE WAS SAY
SAYING TO TELL US WHAT THE
CURRENT STATE OF THINGS IN TERMS
OF AAC, AT LEAST, ARE.
AND HOW THEY EFFECT CHILDREN
DEVELOPING TODAY.
AND HOW THEY COULD EFFECT
CHILDREN AS THEY DEVELOP AND
BECOME ADOLESCENTS AND ADULTS.
SO I THINK WE HAVE -- WE CAN'T
FORGET THAT WHAT WE KNOW IS
BASED ON THE OLD OF WHAT THERE
WAS, NOT THE CURRENT.
AND SO I THINK IN TERMS OF
LOOKING AT OUTCOMES, WE REALLY
ARE AT IN SOME SENSE, A FRESH
START.
BECAUSE WE HAVE ADVANCED SO
MUCH.
I DO THINK THE ISSUES THAT WERE
RAISED ABOUT MAKING SURE WE
INCLUDE THE MOST ADVANCED
TECHNOLOGY IS CRITICAL.
BUT I THINK THAT IT'S NOT THAT
THE -- THAT WE HAVEN'T DEVELOPED
OVER TIME.
WE HAVE.
BUT WE ARE NOT -- WE DON'T HAVE
ENOUGH DATA AND RESEARCH TO
REALLY SHOW WHAT THE CHANGES
HAVE REALLY RESULTED IN OVER
TIME.
SO I JUST ENCOURAGE US TO THINK
ABOUT STUDYING YOUNG CHILDREN
AND THEN STUDYING THEM
LONGITUDINALLY.
I THINK SOMEBODY TALKED ABOUT
THAT EARLIER.
MAYBE IT WAS CONNIE WHO SAID
THAT EARLY ON.
BUT I THINK THAT THAT IS VERY
IMPORTANT.
SO THANK YOU.
>> I THINK KAREN ACTUALLY TALKED
ABOUT THAT, WHICH IS GOOD, ABOUT
EARLY AND JANICE.
EARLY IS GREAT BUT OF COURSE WE
STILL HAVE ADULTS.
SO IT'S LIKE, THERE IS ROOM FOR
EVERYONE.
LET'S SEE.
>> GIACOMO HAS HIS HAND UP.
>> THANK YOU.
YES, I DO RESEARCH BUT I AM ALSO
THE BROTHER OF TWO 30 YEARS OLD
ADULTS WHO ARE AUTISTIC AND
MINIMALLY VERBAL.
AND I WAS REALLY APPRECIATING
THE COMMENT MADE EARLIER ABOUT
THE IMPORTANCE OF INDIVIDUALS
WHO ARE MORE PRONE TO GESTURES
AND SIGNS TO COMMUNICATE AND NOT
SO MUCH USING IMAGES OR VISUAL.
WHEN MY BROTHERS WERE YOUNG,
THEY WERE SPONTANEOUSLY USING
SIGNS.
AND THAT WAS VERY MUCH
DISCOURAGED AT THE TIME BY
PROFESSIONALS, IN MY COUNTRY, IN
ITALY IN THE 90s.
THERE WAS A DOGMA, REALLY IF
YOU'RE AUTISTIC, YOU'RE A VISUAL
PERSON.
YOU'RE A VISUAL EVERYTHING.
SO EVERYTHING HAD TO DO WITH
IMAGES.
AND THAT WAS ONE DOGMA.
THE OTHER IS THE GESTURES OR
SIGNS WERE AS ABSTRACT AS WORDS.
AND SO, BECAUSE THE SYMBOLIC
SYSTEM OF SIGN LANGUAGE WAS
SYMBOLIC IN NATURE.
IT WAS NOT A VIABLE OPTION.
AND SO, THAT ALWAYS MADE ME
THINK ABOUT HOW MUCH INFORMATION
THAT MIGHT COME FROM US, IT
MIGHT COME FROM RESEARCH IN
TERMS OF TURNING INTO DOGMA WHEN
IT BECOMES PART OF CLINICAL
PRACTICE.
AND HOW MUCH WE NEED TO STUDY.
THIS IS IT A PRIORITY.
WE NEED TO STUDY ATTITUDES AND
BELIEFS BEING PRACTITIONERS.
ESPECIALLY THOSE WHO ARE TRAINED
TO THINK ABOUT AUTISM IN A
CERTAIN WAY.
BECAUSE THIS IS WHAT WHAT YOU
ARE HEARING.
AUTISM IS LIKE THIS.
AND THOSE SAME CLINICIANS, I
KNOW THEM, THE ONES WHO WERE
WORKING WITH MY BROTHERS 20
YEARS AGO.
I STILL STAY IN TOUCH WITH THEM.
THEY ARE STILL THINKING THE SAME
THINGS 20 YEARS LATER.
WE DON'T DO A VERY GOOD JOB.
STUDYING THE WAY OUR KNOWLEDGE
IS ASSIMILATED BY PRACTICE.
AND ALSO SORT OF READDRESSING
THE MESSAGES THAT HAVE COME FROM
OUR RESEARCH.
THE SECOND THING THAT I THINK IS
REALLY COMPLEX AS I SAID, IS
FROM A RESEARCH PERSPECTIVE IS
THIS UNTANGLING A QUEUE FROM A
LANGUAGE OUTPUT.
I KNOW IT IS -- WHEN WE DO THE
RESEARCH THAT WE ARE DOING, WE
OFTEN HAVE THIS PHENOMENON ONCE
WE CONSIDER A QUEUE AS A FACTOR
IN OUR ANALYSIS, THAT TENDS TO
EXPLAIN A LOT OF VARIOUS BUT
CONCEPTUALLY IT DOESN'T EXPLAIN
MUCH BECAUSE THERE ARE SO MANY
DIFFERENT FACTORS AND REASONS
WHY A CHILD OR AN ADULT MIGHT
HAVE A PERFORMANCE AND IQ TEST.
BUT SOMETIMES WE GET STUCK
THERE.
WE JUST SAY, YOU KNOW, THERE IS
MANY REASONS THAT THIS IS NOT
REALLY A MEANINGFUL OR SOMETHING
THAT CAN WORK WITH A MEANINGFUL
FACTOR I CAN ADDRESS WITH
INTERVENTION.
AND I THINK WE SHOULD DO IT.
WE SHOULD TRY TO IDENTIFY THE
MECHANISMS THROUGH WHICH VERBAL
LEVEL THAT IS ALIGNED WITH IQ
LEVEL CONTRIBUTES TO FURTHER
DELAYS IN IQ AND VICE VERSA.
IT'S JUST EXTREMELY COMPLEX BUT
IT JUST NEEDS TO BE ADDRESSED.
>> THANK YOU FOR THAT.
I THINK YOU RAISE A REALLY
INTERESTING POINT.
I THINK WE ARE GOING TO TALK
MORE ABOUT THAT TOMORROW.
AND THERE WAS SOME DISCUSSION
TODAY ABOUT THE EXPOSURE.
SO IF YOU'RE A PERSON WHO GETS
SEGREGATED IN SCHOOL AND NOT
EXPOSED TO ANY ACADEMICS, ANY
LITERACY, THAT IS A VERY
LIMITING FACTOR.
SO I THINK THAT IS A HUGE
CONCERN.
AND SO WHAT ARE THE IQ TESTS
MEASURING?
WE HAVE TO THINK ABOUT OUR
MEASUREMENTS AND PEOPLE ARE
THINKING ABOUT THAT.
AND I THINK IT'S AN EXCITING
TIME FOR US TO MOVE FORWARD.
SO THANKS FOR THAT.
>> WE COULD PROBABLY GO --
[ MULTIPLE SPEAKERS ]
>> WHY DON'T WE TAKE THE COMMENT
FROM KRISTA WILKINSON AND THEN
THERE ARE ALSO SOME COMMENTS AND
QUESTIONS THAT HAVE COME THROUGH
FROM THE PEOPLE WATCHING THE
WEBINAR THAT I WOULD BE HAPPY TO
READ OUT.
SO KRISTA, WELCOME.
>> THANK YOU.
SO, YES, AS I HAVE BEEN
LISTENING TO THIS IN PARTICULAR,
I HAVE BEEN STRUCK BY THIS IDEA
OF NEEDING TO RECOGNIZE THE MANY
WAYS IN WHICH WE COMMUNICATE AND
WHETHER IT'S GRAPHIC OR WE HAVE
BEEN TALKING ABOUT SIGN AND
GESTURE BUT I THINK ABOUT
KAREN'S WORK USING MUSIC AND
RHYTHM.
THERE ARE WAYS TO COMMUNICATE
THROUGH THOSE THINGS AS WELL AND
THOSE ARE ENTRY POINTS INTO THE
SOME OF THESE OTHER MORE
TRADITIONAL FORMS OF
COMMUNICATION WE SHOULDN'T LOSE
SIGHT OF.
THAT WAS JUST MY TWO CENTS.
>> SO THERE IS AN INTERESTING
QUESTION RELATED SOMEWHAT TO
THIS DISCUSSION THAT JUST CAME
FROM MEG AN GROSS.
THINKING ABOUT DIFFERENT
MODALITIES, I'D LOVE TO HEAR
THOUGHTS FROM THIS FANTASTIC
GROUP ABOUT SUPPORTING THE
COMMUNICATION OF NON-SPEAKING
AUTISTIC CHILDREN WHO ARE BLIND
AND DON'T HAVE ACCESS TO VISUAL
SUPPORTS.
I'M NOT SHUSH IF ANYONE IN OUR
GROUP HAS EXPERIENCE OR IDEAS TO
ADDRESS THAT COMMENT.
>> I WOULD JUST SAY THAT THAT IS
AN AREA WHERE EMANAGER ENTER
TECHNOLOGY IS PERFECTLY
POSITIONS TO MAKE A DIFFERENCE
TO DEVELOP DEVICES, FOR EXAMPLE,
THAT CAN SENSE SOMEBODY'S HAND
GESTURES.
SQUEEZING, MOVING, AND THEN TO
BE ABLE TO OBSERVE THE PERSON'S
RESPONSES AND TO SEE IF THE
DEVICE IS RESPONDING IN THE
DESIRED WAY.
WE HAVE SO MANY THINGS THAT
ADAPT TO THE OPERATOR IN THE
WORLD OF TECHNOLOGY.
CARS ADAPT TO US.
WHY CAN'T COMMUNICATION DEVICES?
THEY CAN IF WE PUT THE EFFORT
INTO IT.
>> ABSOLUTELY.
[ MULTIPLE SPEAKERS ]
>> DID YOU SEE THAT KRISTI HAS
HER HAND UP?
>> OKAY.
I'M SORRY.
I CAN'T TALK BETWEEN TWO
SCREENS.
HI, KRISTI.
>> HI, HELEN AND THANK YOU FOR
THIS INCREDIBLE DISCUSSION.
I JUST WANTED TO SAY, I DON'T
HAVE EXPERIENCE SPECIFICALLY
WITH THE -- I DO HAVE IDEAS AND
ONE OF THOSE IS THE CONCEPT OF
VOCALIZATION OR NON SPEECH
SOUNDS THESIS INDIVIDUALS ARE
MAKING THAT ARE HIGHLY
COMMUNICATIVE AND HELEN I KNOW
WE HAVE TALKED ABOUT THIS A LOT.
IT'S A SCENARIO THAT I'M WORKING
DEVELOPING TECHNOLOGY FOR.
BUT IT'S PART OF THE
CONVERSATION THAT HASN'T COME UP
YET AND I THOUGHT I'D THROW IT
OUT THERE.
IT'S DEVELOPED SPECIFICALLY TO
POPULATIONS LIKE BLIND
INDIVIDUALS WHO AREN'T ENGAGING.
OR WOULD ENGAGE BETTER WITH MODE
CALLS THAT ARE VOCAL BASED EVEN
IF THEY ARE NOT YET SPEECH BASED
BASED.
>> THANK YOU, ABSOLUTELY.
CHARLOTTE, WELCOME.
I WAS GOING TO READ YOUR COMMENT
IN A MINUTE.
SO INSTEAD --
>> CHARLOTTE: THANK YOU.
THIS HAS BEEN SUCH A FANTASTIC
WORKSHOP.
AND BECAUSE I HAVE E-MAIL
ADDRESSES THAT I DON'T KNOW
ABOUT, I LEARNED TODAY, I WAS ON
THE VISITOR LINK AS OPPOSED TO
THE INVITEEE LINK.
SO APOLOGIES FOR THAT.
BUT I'M HERE NOW.
AND JUST WANTED TO ADD, I ALSO
DON'T HAVE MUCH DIRECT
EXPERIENCE IN THIS BUT I DID DO
A DEEP DIVE INTO THE RESEARCH
RECENTLY BECAUSE I WAS REFERRED
A CLINICAL PATIENT WHO HAS
AUTISM AND SIGNIFICANT VISUAL
IMPAIRMENT.
I COULDN'T FIND VERY MUCH ABOUT
PROMOTING COMMUNICATION IN
VISUAL IMPAIRMENT AND AUTISM
SPECIFICALLY.
I FOUND SLIGHTLY BETTER
LITERATURE IN VISUAL IMPAIRMENT
AND INTELLECTUAL DISABILITY,
WHICH OF COURSE DOES NOT
COMPLETELY OVERLAP BUT AT LEAST
GIVES SOME STRATEGIES FOR
SHAPING VOCAL COMMUNICATION AND
ALSO SOME INTERVENTION THAT IS
DEVELOPED USING TACTILE
COMMUNICATION.
SO, INSTEAD OF USING VISUAL
SYMBOLS, USING THINGS THE CHILD
CAN TOUCH AND FEEL AND RECOGNIZE
THE SHAPE OF.
>> THANK YOU.
SO WE GOT A COMMENT HERE.
IT'S A COMMENT RATHER THAN A
QUESTION.
HE SAYS, I'M NOT AN AUTISTIC
PERSON BUT I AM AN AAC USER.
WE NEED BETTER SPEECH GENERATING
DEVICES THAT ARE EASIER TO
COMMUNICATE WITH.
AND TO UNDERSTAND.
I THINK THE VOICE OF THE DEVICES
PEOPLE USE ARE TOO ROBOTIC AND
SO DIFFICULT TO UNDERSTAND.
SO I WOULD SAY TWO THINGS TO
THAT.
ONE IS THAT QUITE A WHILE AGO,
RUPERT PATEL, WHO IS A COLLEAGUE
OF MINE AT NORTHEASTERN
UNIVERSITY, SHE HAS BEEN
DEVELOPING TECHNOLOGY TO TRY TO
INCORPORATE INTO SPEECH
GENERATING DEVICES A VOICE THAT
IS MORE CLOSELY MATCHED TO THE
COMMUNICATORS.
AND TRYING TO -- AND HOW MUCH
MORE EFFECTIVE THAT IS AND HOW
MUCH MORE USEABLE THE DEVICE IS.
AND IT SEEMS TO ME THAT'S
SOMETHING THAT SHOULD BE SO EASY
TO PICK UP JOAN'S COMMENT ABOUT
TECHNOLOGY BEING ADVANCED.
THAT SHOULD NOT BE SO HARD THAT
THE POINT.
THERE ARE COMPANIES OUT THERE
THAT DO THIS.
WHY NOT PUT AN 8-YEAR-OLD GIRL'S
VOICE THAT MATCHES THE
VOCALIZATION PATTERNS OF THAT
GIRL INTO THE SPEECH GENERATING
DEVICE?
AND TO ME, IT'S NOT -- IT IS A
SCIENTIFIC QUESTION WHETHER THAT
IMPROVES AND ENHANCES THE
EXPERIENCE AND ESPECIALLY THE
QUALITY OF LIFE FOR EVERYONE.
BUT I'M PRETTY -- I'D PUT MY
MONEY ON THE OUTCOME THAT THE
ANSWER IS, YES.
SO I THINK THAT IS SUCH AN
IMPORTANT POINT.
AND YOU KNOW, I THINK WE NEED
ANOTHER WHOLE WEBINAR ON THIS
ISSUE THAT I THINK IT WAS
JENNIFER WHO RAISED IT AT THE
BEGINNING ON IMPLEMENTATION.
THERE IS STUFF OUT THERE.
AND HOW DO WE GET IT INTO THE
HANDS OF THE PEOPLE WHO NEED IT
MOST?
IN A TIMELY WAY.
SO THANK YOU FOR AN IMPORTANT
COMMENT.
WE SHOULD TURN BACK TO SOME OF
OUR AUDIENCE HERE.
AND I'M GOING TO GO TO COURTNEY.
>> THANK YOU FOR THE INVITATION
TO BE HERE.
IT'S COMING UP TO QUARTER PAST 9
AT NIGHT SO I'M NOT SURE HOW
COHERENT I'M GOING TO BE.
BUT I WANTED TO JUST THINK ABOUT
RESEARCH DESIGN.
SO I WAS STRUCK BY CONNIE'S
COMMENT ABOUT THE NEED TO HAVE
APPROPRIATELY POWERED TRIALS BUT
THEN ALL THIS DISCUSSION ABOUT
THE HETEROGENEITY MAKES ME
WONDER IF GROUP TRIALS ARE
REALLY THE WAY TO GO.
AND I HAVE DONE QUITE A LOT OF
META-ANALYSIS LATELY AND THE
THING THAT REALLY STRIKES ME IS
HOW LITTLE REPLICATION THERE IS
IN THE FIELD OF COMMUNICATION
DISORDERS GENERALLY AND
INTERVENTION RESEARCH.
SO MY PLEA IS TO REALLY THINK
ABOUT HOW WE CAN USE DATA THAT
IS ALREADY THERE TO -- AND TO
THINK ABOUT HOW WE MOVE THAT
FORWARD BY HAVING MANY LABS AND
LABS THAT ARE WILLING TO DO
REPLICATIONS AND POOLING SINGLE
CASE STUDIES SO YOU CAN USE
MEHTA ANALYTIC TECHNIQUES TO
BUILD A BIGGER EVIDENCE BASE,
PARTICULARLY WHEN YOU HAVE RARER
CONDITIONS, FOR EXAMPLE, OR TO
SICK INDIVIDUALS WHO ARE ALSO
BLIND.
IF PEOPLE CAN COLLABORATE AND
AGREE WITH PROTOCOLS AND SHARE
DATA, WE CAN REALLY RAMP UP THE
EVIDENCE BASE IN A SYSTEMATIC
WAY.
AND MAKE THE MOST OF THE
FANTASTIC RESEARCH THAT IS GOING
ON.
>> YES.
I WOULD AGREE THAT FOR SOME
QUESTIONS, YOU DEFINITELY NEED
TO THINK ABOUT SINGLE CASE.
BUT WITH SOME, I THINK YOU CAN
HAVE FULLY POWERED GROUP DESIGNS
JUST DEPENDS ON WHAT YOUR
QUESTION IS, WHAT YOUR
POPULATION IS, WHAT THE AGES
ARE.
AND I THINK TOMORROW WE'LL HAVE
REPRESENTATION OF DIFFERENT
KINDS OF MODELS.
SO I THINK IT'S IMPORTANT TO
CONSIDER.
>> SLIGHTLY BUT GETTING THE END
FOR THOSE IS GOING TO BE QUITE
CHALLENGING.
SO -- OPERATION AND REPLICATION
IS ONE WAY TO DO THAT, I THINK.
>> COLLABORATION, FOR SURE.
I THOUGHT I SAW JANICE LIGHT
WITH HER HAND UP.
NO?
>> YES, THANK YOU FOR CYCLING
BACK AGAIN.
I ACTUALLY WANTED TO KIND OF GO
BACK TO THE COMMENT OR THE
QUESTION ABOUT WHAT ABOUT
INDIVIDUALS WHO ARE BLIND.
AND SO SORRY TO SHIFT TOPICS.
BUT SO THERE ISN'T A LOT OF
RESEARCH RELATIVE TO THOSE
INDIVIDUALS THAT HAVE MINIMAL
SPEECH AND ARE BLIND AND ON THE
AUTISM SPECTRUM BUT THERE IS
VALUABLE RESEARCH IN THE AREAFUL
ALTERNATIVE COMMUNICATION WE CAN
DRAW ON.
SO THERE ARE A VARIETY OF
TECHNIQUES THAT HAVE BEEN USED
AND THE ONES THAT ARE MOST
APPROPRIATE OBVIOUSLY DEPEND ON
THE SKILLS OF THE INDIVIDUAL
THAT IS COMING TO IT AND THEIR
NEEDS.
BUT AT A VERY BASIC LEVEL, WE
MAY MAKE USING OF OBJECTS.
WE MAY MAKE USE OF TACTILE
SYMBOLS THAT CAN BE FELT AS
OPPOSED TO NECESSARILY RELYING
ON VISION.
AND ALSO MAKE USE SOMETIMES OF
AUDITORY SCANNING WHERE OPTIONS
ARE PRESENTED ODDTORIALY TO THE
INDIVIDUAL AND THEY MAY SIGNAL
IN SOME WAY WHEN YOU GET TO THE
OPTION THAT THEY WOULD LIKE TO
COMMUNICATE.
SO THOSE ARE CERTAINLY SOME
OPTIONS THAT HAVE BEEN USED.
IN ADDITION WE HAVE INCREASING
DEVELOPMENT OF TECHNOLOGY THAT
RECOGNIZES GESTURES AND THOSE
ARE OTHER WAYS WHERE WE CAN HAVE
INDIVIDUALS WHO ARE RELYING ON
GESTURES AND BODY MOVEMENT AND
SOME ASSISTANCE FOR THOSE WHO
MAY NOT HAVE THE KNOWLEDGE TO BE
ABLE TO INTERPRET THOSE VERY
WELL WHERE THE TECHNOLOGY CAN
CARRY THAT BURDEN.
I AGREE THIS IS AN AREA WHERE
RELATIVE TO THOSE INDIVIDUALS ON
THE SPECTRUM WE DEFINITELY NEED
FURTHER RESEARCH TO EXPLORE
WHICH OPTIONS WORK BEST FOR
WHICH INDIVIDUALS AND WHICH
STAGES OF DEVELOPMENT.
>> SHIC I SEE YOU HAVE YOUR HAND
UP.
>> THIS IS INCREDIBLE.
I JUST LEARNED A TREMENDOUS
AMOUNT JUST BY HANGING OUT AND
BY OSMOSIS.
THOUGH I FEEL LIKE I'M A WET,
FULLY WET SPONGE AT THIS POINT.
SO, I JUST WANT TO GO BACK TO
JOHN'S COMMENT AND CONCERNS
ABOUT TECHNOLOGY.
I THINK THAT THERE IS A LOT OF
ISSUES.
I THINK WE TALKED ABOUT THESE
EXTENSIVELY AT DIFFERENT POINTS
IN THIS KIND OF NSF VERSUS NIH
TENSION WHERE IF YOU WANT TO SEE
ALL THE LATEST TECHNOLOGIES AND
ALL YOU THE REALLY INNOVATIVE
APPLICATIONS AND ALL THE REALLY
COOL DEVELOPMENTS OF
TECHNOLOGIES, YOU GO TO NSF.
AND THAT IS -- THEY ARE FUNDING
ALL THAT WORK.
AND THEN AT THE NIH, THE
DEVELOPMENT IS -- IT'S ONE OF
MISMATCHED PRIORITIES FOR
COMPUTER SCIENTISTS, ENGINEERS
VERSUS CLINICAL SCIENTISTS,
DOCTORS, PSYCHOLOGISTS.
AND THAT TENSION REALLY RESULTS
IN KIND OF, IF YOU SEE WORK
COMING OUT OF NSF, YOU SEE
PROTOTYPE, PROTOTYPE, AND YOU
LOOK AT THESE AND IT IS SO COOL.
AND IT NEVER TURNS INTO A
CLINICAL TRIAL.
NEVER COMES OUT INTO THE
PRACTICAL DEPLOYMENT BECAUSE
THAT'S NOT WHERE THE INTEREST
IS.
MAYBE IF YOU ARE LUCKY YOU GET A
SPIN OFF AND THAT BUM BELLS
AROUND FOR A COUPLE OF YEARS AND
MAYBE THEY GET GRANTS OR
FUNDING.
THE CHANCE OF SURVIVAL IN THIS
LANDSCAPE IS ABOUT BETWEEN 3-5%.
SO THE ODDS AREN'T GREAT.
I'M STRUCK BY THE EXPERIENCES OF
ONE OF MY COLLEAGUES, KEVIN
TYLER, WHOET CRAKED A SPEECH --
ONE OF THESE EARLY SYSTEM
SYSTEM, THE EARLY TIME OF --
ABOUT A DECADE AGO.
AND HE WAS WORKING AS A
FINANCIAL ADVISOR AT THE TIME
AND -- SORRY, ON WALL STREET,
ONE OF THESE FINANCIAL PEOPLE.
AND HE TOOK A YEAR OUT TO
BASICALLY BUILD AN AAC HE
THOUGHT WOULD BE MORE USEABLE
FOR HIS SISTER WHO WAS MINIMALLY
VERBAL.
AND I RECENTLY WENT BACK AND
ASKED WHAT WAS THE OPPORTUNITY
COST FOR HIM TO TAKE A FULL YEAR
OUT TO DEVELOP THIS SYSTEM AND
IT WAS ABOUT TWO MILLION
DOLLARS.
THAT WAS HIS OPPORTUNITY COST
FOR TAKING A YEAR OUT OF HIS
CAREER TO BUILD THIS SYSTEM.
THIS IS A SYSTEM THAT HE DID
WHAT HE SET OUT TO DO.
HE BUILT THE SYSTEM HIS SISTER
USED AND LOVED TO USE FOR A
PERIOD OF TIME UNTIL OTHER
THINGS CAME ALONG.
BUT I'VE SEEN COMPANIES COME AND
GO AND THERE IS JUST NOT
INFRASTRUCTURE FOR IT.
WE HAVE TO ADDRESS TWO ISSUES OF
COMPETING TRADITIONS NSF AND NIH
TO BASICALLY BUILD THE
TECHNOLOGIES AND ALSO TEST THE
TECHNOLOGIES AND TURN THEM INTO
TOOLS THAT ARE USEABLE AND ALSO
PERHAPS JUST OPEN-SOURCE FOR THE
WORLD FOR SOMEONE ELSE TO COME
AND TAKE THEM AND PICK THEM UP
AND DEVELOP THEM FURTHER AS THEY
NEED.
BECAUSE IT'S NOT GOING TO COME
FROM A COMPANY.
THERE IS NOT -- UNLESS WE FIGURE
OUT HOW TO MAKE MONEY FROM THESE
SYSTEMS, AND THERE ISN'T.
THE LANDSCAPE ISN'T BIG ENOUGH.
I LOOKED 5 YEARS AGO AND ONLY
COMPANY MAKING MONEY IN THE APP
STORE WAS -- ABOUT 10 MILLION
DOLLARS A YEAR.
AND EVERY PLACE ELSE WAS LESS
THAN $100,000 AND A COMPANY JUST
CAN'T SURVIVE ON THAT.
SO I FEEL LIKE THESE
INFRASTRUCTURE ISSUES ARE THE
THINGS WE REALLY NEED TO
ADDRESS.
>> GRATED.
THANK YOU FOR THAT.
I HAVE AN IMPORTANT COMMENT FROM
OUR SPEAKER, GRANT BLASCO WHO
WANTS TO RESPOND TO PAN CHO'S
COMMENT.
HE SAYS, I AGREE WITH PAN CHO
AND WANT TO ADD AI TO AAC VOICES
SO I CAN SHARE ENOUGH EMOTION
WITH MY VOICE TO INCREASE MY
CONNECTION WITH OTHERS.
AND JORDAN ZIMMERMAN WHO YOU'LL
HEAR FROM TOMORROW, ECHOS
GRANT'S COMMENT AND ALSO WANTS
TO SAY THAT A LOT OF SPACES I'M
IN, I SOUND THE SAME AS OTHER
AAC USERS AND MY VOICE CANNOT BE
DIFFERENT.
SO THAT SEEMS TO BE A VERY
IMPORTANT AREA FOR RESEARCH
GOING FORWARD.
AND THANK YOU FOR THOSE COMMENTS
GRANT AND JORDAN.
>> MATH YOU?
MATTHEW?
THERE YOU ARE.
>> SORRY.
DIFFICULTY WITH THE MICROPHONE.
I JUST LIKE TO SAY BRIEFLY -- I
WAS LISTENING TO WHAT FRED JUST
SAID AND THE ISSUE OF
OPEN-SOURCE PROJECTS AND REALLY
GETTING ENGINEERS AND SCIENTISTS
TALKING WITH STAKEHOLDERS AND
RESEARCHERS AND CLINICIANS IS
CERTAINLY ONE THAT IS DEAR TO MY
HEART BECAUSE YOU CAN'T -- IT'S
SO DIFFICULT TO GET THE WORD OUT
EVEN JUST TO GET THE WORD OUT TO
ENGINEERS AND SCIENTISTS.
WE ARE LOOKING FOR YOUR TALENTS.
YOUR TALENTS ARE USEFUL IN THIS
KIND OF WORK.
AND WE'D LIKE TO INVOLVE YOU IN
THIS OPEN-SOURCE EFFORT.
SOMEHOW IT'S NOT SOMETHING THAT
IS REALLY SEEN AS PART OF THE
ENGINEERING CULTURE.
AND WE HAVE STRUGGLED TO INVOLVE
CODERS.
WE'LL TAKE ALL THE VOLUNTEER
LABOR WE CAN GET.
BUT IT'S BEEN REALLY, REALLY
HARD AND I'LL PUT IN A PLUG FOR
OUR OWN TECHNOLOGY WHICH YOU CAN
LEARN LAY LOT MORE ABOUT BY
GOING TO POINT OUT WORDS.ONLINE.
>> THANK YOU, MATTHEW.
WE'LL CIRCLE BACK TO KRISTI.
>> THANKS.
I WANTED TO SORT OF OPEN UP THE
DISCUSSION TOWARDS THE
MARKETABILITY OF SOME OF THE
TECHNOLOGIES.
SO A LOT OF PEOPLE BROUGHT OUT
THIS TECHNOLOGY DOESN'T EXIST OR
IT EXISTS BUT IT'S NOT IN THIS
SPACE AND AS SOMEBODY WHO WORKS
IN THE TECHNOLOGY AND SCIENCE
SPACES, AND ALSO IS THE PARENT
OF A NON-SPEAKING INDIVIDUAL AND
SORT OF MERGING THESE WORLDS, I
SEE A LOT OF THE TECHNOLOGY THAT
EXISTS.
IN FACT I LOOKED AT TAKING
TECHNOLOGY TO SPECIFICALLY FOR
THESE POPULATIONS TO MARKET AND
I WAS TOLD THERE ISN'T A MARKET
FOR IT.
THAT I WOULD NEED TO MARKET IT
FOR THE NEUROTYPICAL POPULATION
AND THEN SHOULD A SUB MARKET
LIKE A SIDE THING THAT WAS
BASICALLY A NONPROFIT VERSION OF
MY COMPANY.
AND THAT WOULD BE FOR THE
POPULATION THAT I WAS REALLY
INTERESTED IN.
AND I THINK THIS IS A LIKE
PROBLEM AND IT IS TRUE EVEN FOR
OTHER PROJECTS AND MAIN OTHER
THINGS THAT WERE DEVELOPED
SOLVING PROBLEMS THAT HAVE BEEN
BROUGHT UP IN THIS DISCUSSION.
AND SO I LIKE TO OPEN IT UP FOR
WAYS, BRAINSTORMING WAYS OF
EITHER BRINGING ANGEL
INVESTMENTS OR NONPROFITS OR
FOUNDATIONS OR MONEY TO SUPPORT
THE DEVELOPMENT OF PRODUCTS AND
TOOLS AND TECHNOLOGIES THAT ARE
DESIGNED SPECIFICALLY FOR A
SMALLER POPULATION.
LIKE IT OR NOT, THIS IS A
SMALLER POPULATION THAN THE
BROAD MARKET THAT MOST THINGS
ARE DESIGNED FOR.
AND SO HOW DO WE WORK WITHIN OUR
UNDERSTANDING OF, THIS IS HOW
THE WORLD WORKS BUT REALLY
DEVELOP THINGS THAT ARE UNIQUELY
USEFUL TO THIS UNIQUE
POPULATION?
>> I THINK THAT IS AN ISSUE.
IT'S SOMETHING THAT I THINK
ABOUT A LOT EVERY TIME I READ
ABOUT THE NEW EXCITING GENE
THERAPY, WHICH COSTS A MILLION
DOLLARS PLUS TO DELIVER TO THE
ONE OR TWO PEOPLE WITH A RARE
MUTATION.
IT HELPS TO IMPROVE NOT AN
ENORMOUS AMOUNT, BUT DOES EFFECT
THEIR QUALITY OF LIFE.
AND WITHIN MEDICINE, SOMEHOW
THEY ARE -- I THINK THEY ARE
GRAPPLING WITH THAT ISSUE.
BUT, SOMEHOW WHEN IT COMES TO
NON-BIOLOGICAL INTERVENTIONS, WE
DON'T HAVE THE SAME KIND OF
OPPORTUNITIES AVAILABLE.
SO THAT'S A SERIOUS KIND OF GAP
IN THE INFRASTRUCTURE THAT FRED
ALLUDED TO AS WELL.
SO IMPORTANT POINTS.
STEPHEN?
>> HERE I AM.
AS I'M LISTENING, I THINK SOME
REALLY IMPORTANT THINGS TO KEEP
IN MIND.
I WAS STRUCK BY HELEN'S
DISCUSSION ABOUT THE
AMPLIFICATION OF HETEROGENEITY.
AND YES, WE ARE FINDING
INCREDIBLE DIVERSITY WITHIN THE
AUTISM SPECTRUM.
AND SOMETIMES I EVEN WONDER IF
THE DIVERSITY WITHIN THE
SPECTRUM IS GREATER THAN THE
DIVERSITY OUTSIDE OF THE
SPECTRUM.
BUT I MIGHT BE BIASED BECAUSE I
SPEND ALL MY TIME INSIDE THE
SPECTRUM AS AN AUTISTIC PERSON.
MUSIC WAS DISCUSSED.
I GIVE MUSIC LESS TONS AUTISTIC
PEOPLE.
-- LESSONS TO -- SOME SPEAK,
SOME DON'T, SOME A LITTLE BIT.
THESE AUTISTIC MUSIC STUDENTS
HAVE A FULL RANGE OF ABILITIES
IN MUSIC FROM PROFESSIONAL LEVEL
TO THOSE WHO WORK HARDER AT IT.
AND WHAT I FIND FASCINATING
ABOUT MUSIC AND THE OTHER ARTS
IS THAT THEY COMMUNICATE WITH
ANOTHER -- A DIFFERENT PART OF
THE BRAIN THAN DOES VERBAL
COMMUNICATION.
AND OFTEN I HAVE FOUND MUSIC AND
THE ARTS SERVE AS A CARRIER
STIGMA FOR COMMUNICATION.
AND SOMETIMES IT IS THE MEANS OF
COMMUNICATION.
SO I THINK MORE RESEARCH INTO
THIS AREA IS IMPORTANT.
THERE IS RESEARCH SUGGESTING
THAT MUSIC -- I SHALLY EXPOSURE
TO KEYBOARD MUSIC INCREASES
NUMBER OF NEURAL CONNECTORS IN
THE CORPUS CALLOSUM OF THE BRAIN
HELPING TO INTEGRATE AND CONNECT
THE TWO SIDES OF THE BRAIN.
SO, MUSIC FOR AUTISTIC PEOPLE,
YOU MIGHT SAY IS A NO-BRAINER.
ALSO, AI.
CERTAINLY ONE THING WE COULD DO
IS MAKE -- USE AI TO MAKE TEXT
TO SPEECH MORE HUMANISTIC
SOUNDING AS GRANT SAID.
AND IT SHOULDN'T BE TOO HARD TO
DO THAT.
AND THEN FINALLY, WORKING
TOGETHER.
I THINK IT'S A REALLY IMPORTANT
THEME THAT WE HAVE HERE.
IT'S A STRONG THEME AND IT'S
RUNNING THROUGH OUR TIME
TOGETHER.
AND I SUSPECT IT WILL BE THAT
WAY TOMORROW.
AND WORKING WITH EACH OTHER,
RESPECTING EACH OTHER'S OPINIONS
WITH THE FINAL GOAL OF MAKING
FULFILLING AND PRODUCTIVE LIVES
FOR AUTISTIC PEOPLE THE RULE
RATHER THAN THE EXCEPTION.
>> THANK YOU.
LEN?
YOU HAVE YOUR HAND RAISED.
>> I WANT TO RESPOND QUICKLY TO
KRISTI'S POINT WHICH IS A GOOD
ONE.
THERE ARE WAYS TO EXPAND THE
MARKET IF YOU WILL BECAUSE WE
HAVE PEOPLE THAT DON'T HAVE
AUTISM THAT HAVE INTELLECTUAL
DISABILITIES THAT ARE MINIMALLY
VERBAL.
WE HEARD ABOUT OTHER POPULATIONS
TODAY.
AND FROM A RESEARCH PERSPECTIVE,
I THINK THERE MAY BE REASONS
SOMETIMES TO EXPAND OUR SAMPLE
AND BRING PEOPLE IN.
INDEPENDENT OF THEIR DIAGNOSIS.
SO THERE MAY BE WAYS TO BUILD AN
EVIDENCE BASE THAT CAN HELP
SUPPORT THE REALLY MAKING THE
POINT THAT THIS IS POTENTIALLY A
LARGER MARKET, AT LEAST FOR SOME
TECHNOLOGIES AND INTERVENTIONS.
>> ABSOLUTELY.
KRISTA YOU HAVE YOUR HAND UP.
>> YES, THANK YOU.
THIS IS REALLY SUCH AN
INTERESTING DISCUSSION.
I JUST WANTED TO DO TWO POINTS.
FIRST, STEPHEN, I HAVE A
SABBATICAL COMING UP WITH A
COLLEAGUE FROM THE SCHOOL OF
THEATER WHERE WE ARE GOING TO BE
LOOKING AT THE ROLE OF THE
PERFORMING ARTS IN SUPPORTING
COMMUNICATION OUTCOMES.
SO, I'M GLAD YOU THINK IT IS
IMPORTANT BECAUSE I CERTAINLY
DO.
THE OTHER THING I WANTED TO
POINT OUT WAS, JUST TO COME BACK
TO THE VOICE.
I KNOW WE SAID THIS MULTIPLE
TIMES, BUT I HAVE A STUDENT WHO
IS EXPLORING HOW PEOPLE WHO USE
AAC IN GENERAL ACCESS MENTAL
HEALTH SUPPORT SERVICES AND SO
SHE INTERVIEWED SEVERAL ADULTS
WHO USE AAC.
ONE OF WHOM HAD AUTISM.
ON THEIR EXPERIENCES WITH THIS
AND THE LACK OF ABILITY OF THE
AAC VOICE TO HAVE THOSE
INFLECTIONS WAS A HUGE BARRIER
IDENTIFIED BY THOSE INDIVIDUALS.
SO THIS IS JUST TO ME A REALLY
IMPORTANT PART OF THIS
CONVERSATION.
>> THANK YOU FOR THAT.
I DO THINK IT IS REALLY
IMPORTANT.
I THINK JANICE, YOU HAVE YOUR
HAND UP AGAIN?
>> I JUST HAD A COUPLE OF REALLY
QUICK COMMENTS.
ONE, LEN JUST TO ECHO YOUR
COMMENT.
I ALSO AGREE THAT VERY OFTEN IF
AAC TECHNOLOGIES ARE WELL
DESIGNED THEY CAN SUPPORT ALL OF
US OR MANY PEOPLE, IN TERMS OF
DOING THINGS BETTER.
AND I THINK THE TRANSITION TO
LITERACY TECHNOLOGY THAT WE
TALKED ABOUT IS A REALLY GOOD
EXAMPLE.
WE HAVE DONE A COUPLE OF STUDIES
THAT INVOLVE SMALL GROUPS WITH
KIDS ON THE AUTISM SPECTRUM BUT
ALSO KIDS THAT ARE NEUROTYPICAL
AND ALL OF THEM BENEFIT FROM THE
TECHNOLOGIES IN TERMS OF
INCREASING LITERACY SKILLS AS
WELL AS THEIR LANGUAGE AND
COMMUNICATION.
SO THAT'S AN EXAMPLE, I THINK.
I DO THINK ALSO THAT IN TERMS OF
SOLVING THE TECHNOLOGY PROBLEMS,
WE NEED TO CHALLENGE THE
MAINSTREAM TECHNOLOGY
DEVELOPERS, GOOGLE AND
MICROSOFT.
THEY NEED TO BE AT THE TABLE IN
TERMS OF HELPING US TO DEVELOP
TECHNOLOGIES THAT ARE MORE
INCLUSIVE AND THAT SUPPORT
PEOPLE REGARDLESS OF THEIR
CAPABILITIES.
SO, I THINK THOSE ARE WAYS TO
KIND OF LEVERAGE SOME OF THAT.
AND FOR FUNDING FOR DEVELOPMENT,
I KNOW THAT NIH HAS A STRONG
SBIR PROGRAM, THE NATIONAL
INSTITUTE ON DISABILITY,
INDEPENDENT LIVING AND
REHABILITATION RESEARCH HAS A
STRONG SBIR PROGRAM AND THEY
CERTAINLY WILL DEVELOP INITIAL
IDEAS STAGE WORK AND THEN LATER
DEVELOPMENT TOWARDS THINGS.
I UNDERSTAND THAT IS NOT THE
ONGOING MARKETPLACE BUT IT IS
THE INITIAL DEVELOPMENT WORK.
AND JUST THE FINAL COMMENT IS
JUST TO SORT OF ALERT EVERYBODY
THAT IN ADDITION TO THE HUGE
PLAYERS AND NSF AND NIH THAT
NADLER IS ALSO AN IMPORTANT
INSTITUTION WITH THE FEDERAL
GOVERNMENT TO BE THINKING ABOUT
SO THE NATIONAL INSTITUTE ON
DISABILITY AND INDEPENDENT
LIVING AND REHABILITATION
RESEARCH.
AND THEY HAVE A NUMBER OF
RESEARCH PROGRAMS, PARTICULARLY
REHABILITATION ENGINEERING
RESEARCH PROGRAMS THAT WE ARE
PART OF, THAT ARE SPECIFICALLY
DESIGNED TO BRING TOGETHER
CONSUMERS WHO HAVE UNMET NEEDS,
RESEARCHERS, ENGINEERS, AS WELL
AS PRACTITIONERS, CLINICIAN
SERVICE PROVIDERS.
AND I THINK THOSE TEAMS CAN BE
REALLY DYNAMIC IN TERMS OF
ADVANCING TECHNOLOGY SOLUTIONS.
ANOTHER RESOURCE FOR PEOPLE.
>> THANK YOU VERY MUCH.
I HAVE A COMMENT HERE FROM ALYSA
WHO HAS BEEN OBSERVING OUR
WEBINAR THIS AFTERNOON.
AND HAS PRESENTED SEVERAL
COMMENTS BUT SHEERAN INTERESTING
ONE THAT I'D LIKE TO PICK OUT.
WE CAN COME BACK TO SOME OF
HER,.
REGARDING THE QUESTION OF
ATTITUDES, KNOWLEDGE AND
PRACTICE, I'M WORKING ON A
SURVEY ABOUT THIS AIMED AT
PROFESSIONALS WORKING WITH
AUTISTIC STUDENTS.
UNDERSTANDING THEIR TRAINING --
EXCUSE ME -- ATTITUDES AND
PRACTICES WITH AUTISTIC STUDENTS
WHO COULD BENEFIT FROM AAC.
I AGREE IT'S AN IMPORTANT THING
TO EXAMINE.
SO HIGHLIGHTING THE WORK WE HAVE
BEEN TALKING ABOUT, THE
CONNECTION TOL INDUSTRY AND
DEVELOPING NEW INTERVENTIONS BUT
ON THIS OTHER SIDE, HOW WE ARE
GOING TO GET CLINICIANS AND THE
EDUCATORS TO IMPLEMENT WHAT IS
DEVELOPED?
AND WE NEED TO BE THINKING ON
BOTH SIDES OF THAT EQUATION WITH
THE INDIVIDUAL AND THEIR FAMILY
CENTERED THERE BETWEEN WHO IS
GOING TO DELIVER -- WHO IS GOING
TO DEVELOP IT AND WHO IS GOING
TO BE DELIVERING IT.
SO I THINK THAT IS ANOTHER
IMPORTANT POINT AS WE CONSIDER
NOVEL INTERVENTIONS.
I'LL GO THEN TO THE NEXT
COMMENT.
THIS EVERTHIS IS FROM LEE MASON.
SEVERAL OF THE PRESENTERS
EMPHASIZED THE IMPORTANCE OF
INCLUDING PEOPLE WITH AUTISM AS
RESEARCH COLLABORATORS.
AND I UNDERSTAND THE IMPORTANCE
OF DOING SO.
HOWEVER, I'D LIKE TO POINT OUT
THAT WHILE SUCH INCLUSIVENESS
ENHANCES THE SOCIAL VALIDITY OF
OUR RESEARCH, IT DOESN'T
INHERENTLY LEAD TO BETTER
OUTCOMES.
THE QUESTION TO THE EXTENT
INCLUSIVE RESEARCH IS BETTER
RESEARCH IS ITSELF AN EMPIRICAL
QUESTION.
AND ONE THAT IS ABSOLUTELY WORTH
EXPLORATION.
SO THAT'S KIND OF A PROVOCATIVE
POINT HERE.
IT'S LIKE WE HAVE ASSUMED THAT
PARTICIPATORY RESEARCH IS
BETTER.
ON SOME LEVELS IT IS, BELL ARE
THE OUTCOMES GOING TO BE
DIFFERENT AND BETTER AS A RESULT
OF THAT?
I'D LOVE TO HEAR PEOPLE'S
RESPONSES TO.
>> ONE THING IS I DON'T THINK WE
HAVE ENOUGH OF IT IN THIS
POPULATION.
SO IT MIGHT BE DIFFICULT TO
DETERMINE IF OUTCOMES ARE BETTER
OR NOT.
AND I SEE STEPHEN SHORE HAS HIS
HAND UP SO MAYBE HE WAS GOING TO
RESPOND TO THAT.
>> STEPHEN SHORE: I CERTAINLY
WILL.
AND I THINK WE ALWAYS NEED TO BE
RESPECTFUL OF WHEN WE -- IN
DOING THAT RESEARCH.
AND I THINK THE BEST WAY TO KNOW
KNOW WHAT IS IMPORTANT FOR
AUTISTIC INDIVIDUALS.
AND WHAT IS TO -- WHAT RESEARCH
STRATEGIES ARE MORE VALID.
WE NEED INPUT FROM AUTISTIC
INDIVIDUALS T DOESN'T MEAN US
AUTISTIC PEOPLE WILL BE ALWAYS
BE RIGHT.
JUST LIKE NOBODY ELSE IS ALWAYS
RIGHT.
BUT I BELIEVE IT IS IMPORTANT TO
LISTEN TO US AND AN EXAMPLE IS,
IN MY IRB AT THE UNIVERSITY, AS
PART OF MY INITIAL RESEARCH
PROJECT INVOLVING PARTICIPATORY
RESEARCH, WE GOT CAUGHT UP
INIMENTED RB DISCUSSIONS WHERE
THEY ASSUMED THAT ALL AUTISTIC
PEOPLE WERE PARTS -- WERE
CONSIDERED AS PART OF THE
VULNERABLE POPULATION.
AND MANY OF US ARE.
BUT ALSO MANY OF US ARE NOT.
SO WHAT THAT MEANS IS THAT WE
NEED TO TAKE A LOOK AT WHAT WE
CONSIDER WHO IS VULNERABLE AND
THEN WHAT SAFEGUARDS ARE WE
GOING TO TAKE AND WHAT CAN WE DO
IN TERMS OF RESEARCH?
AND WHO IS NOT VULNERABLE.
AND PLAN OUR RESEARCH IN THAT
WAY.
TO THE CREDIT OF THE IRB AT MY
UNIVERSITY, THEIR RESPONSE WAS
TO INVITE ME TO THEIR IRB SO
THEY COULD LEARN MORE ABOUT IT.
>> I'M GOING TO GO TO PEOPLE
THAT HAVEN'T HAD A CHANCE TO
SPEAK YET.
>> I KNOW THAT QUESTION WAS
MEANT TO BE PROVOCATIVE.
SO APPRECIATE THAT.
I THINK MAYBE ONE OF THE BEST
EXAMPLES OF WHY THIS KIND OF
PARTICIPATORY APPROACH IS
ESSENTIAL WOULD COME FROM THE
CONVERSATION THAT WE HAD JUST IN
THE LAST 20 MINUTES.
WHEN PONCHO AND AAC USER SCIZZ,
HE'D LOVE TO BE ABLE TO HAVE
EMOTION IN HIS AAC DEVICE.
AND JORDAN SAYS THE SAME THING
AND GRANT SAYS THE SAME THING.
AND I DON'T BELIEVE THAT THAT
PARTICULAR ISSUE AROSE IN THE
DISCUSSION UP TO THAT POINT.
SO HOW WILL WE ADDRESS WHAT THE
ACTUAL CONSIDERATIONS ARE OF
PEOPLE CURRENTLY USING AAC IF
WHY DON'T ACTUALLY ATTEMPT TO
HEAR WHAT THEY HAVE TO SAY AND
INVOLVE THEM IN THE BEGINNING.
>> ABSOLUTELY.
GOOD POINT.
LET'S SEE, WHO IS NEXT?
ALLISON?
>> I THINK IN THIS POPULATION
THAT WE ARE TALKING ABOUT, WE
HAVE TO THINK ABOUT THE
DEFINITION OF PARTICIPATORY
RESEARCH AND WHO PARTICIPATES.
I THINK EARLIER AT THE BEGINNING
OF THIS WEBINAR, JOHN ROBISON
SAID IT WHEN HE MET AMY'S SON HE
REALIZED HE WAS AS AN ADULT WITH
AUTISM WHO SPEAKS, HE IS NO, NO
BETTER POSITION TO UNDERSTAND OR
SPEAK FOR HER SON.
SO, I THINK WE HAVE TO MAKE SURE
THAT WE ARE INCLUDING PARENTS IN
WHAT WE ARE DOING RESEARCH ON
MINIMALLY VERBAL INDIVIDUALS
WITH PROFOUND AUTISM.
OTHERWISE THEY ARE EXCLUDED.
>> ABSOLUTELY.
MATTHEW?
>> JUST TO POINT OUT THAT THERE
IS SOME LITERATURE ON THE
EFFECTS OF STAKEHOLDER
INVOLVEMENT.
AND I KNOW THAT THE NATIONAL
INSTITUTE FOR HEALTH RESEARCH IN
THE U.K. HAS A WHOLE HANDBOOK
THAT SITES THAT LITERATURE.
SO IS IT OUT THERE FROM FIELDS
OTHER THAN AUTISM.
BUT I ALMS WOULD LIKE TO LINK
THIS DISCUSSION BANK TO
SOMETHING THAT GIACOMO SAID
DURING HIS COMMENTS ABOUT DOGMA.
AND IDEOLOGIES.
BECAUSE STAKEHOLDER INVOLVEMENT
IS THE BEST WAY TO BREAKDOWN
THOSE COUNTER PRODUCTIVE
IDEOLOGIES.
WE ALL KNOW THE OLD IDEOLOGY
THAT AUTISM WAS EXCLUSIVELY A
DISORDER OF SOCIAL
COMMUNICATION.
SO THAT RULED OUT SO MANY
ASPECTS WHAT YOU WANT TO CALL
SYMPTOMS OR CO-MORBIDITIES OR
SPECIFIERS THAT WE NOW KNOW ALL
ABOUT.
SENSORY ASPECTS, MOTOR ASPECTS,
SLEEP PROBLEMS, GASTROINTESTINAL
DIFFICULTIES.
I MEAN IF WE HAD JUST SHUT UP
AND LISTENED TO PARENTS AND
FAMILIES AND PEOPLE WITH AUTISM,
WE WOULD HAVE KNOWN ABOUT ALL OF
THESE DECADES EARLIER!
AND WE WOULD HAVE INVESTIGATED
THEM.
STAKEHOLDER INVOLVEMENT IS
ESSENTIAL TO ASKING THE RIGHT
QUESTIONS AND TO FRAMING THE
RESEARCH TO ANSWER THOSE
QUESTIONS IN THE RIGHT WAY.
I GUESS THAT'S MY POINT.
>> THANK YOU FOR THAT.
REALLY IMPORTANT.
I WANT TO READ SOMETHING FROM A
COMMENT FROM JORDAN ZIMMERMAN.
AND THEN WE'LL GET TO AMY DIETZ.
SO I'D LIKE TO COMMENT.
I BELIEVE LIVED EXPERIENCE
SHOULD DRIVE SYSTEMS CHANGE AND
RESEARCH.
FIRST PERSON ACCOUNTS BY US AS
AUTISTIC PEOPLE WHO GAIN ACCESS
TO AAC LATER IN LIFE IS HIGHLY
RELEVANT AND IMPORTANT.
YES.
ABSOLUTELY, JORDAN.
AND I THINK EVERYONE HERE WOULD
PROBABLY AGREE WITH YOU.
THANK YOU FOR THAT.
AMY?
>> YES, I ECHO ALLISON AND
MATTHEW AND JORDAN HAVE SAID.
AND AS SOMEONE WHO PARTICIPATES
IN PARTICIPATORY-BASED RESEARCH,
I WILL SAY THAT IT IS ADDITIONAL
WORK AS A RESEARCHER.
SO I WILL SAY TO THE RESEARCHERS
IN THE GROUP THAT IF IT'S SCARY,
I UNDERSTAND.
AND SARAH IS IN THE ROOM AND I
KNOW SHE PARTICIPATES IN THIS
TYPE OF WORK TOO.
BUT JACKIE HINKLEY HAS PCORI
FUNDING AND ACTUALLY SUPPORTS
HUBS AROUND THE COUNTRY TO HELP
TRAIN RESEARCHERS.
THIS IS IN APHASIA.
AND IF YOU'RE INTERESTED IN
DOING PARTICIPATORY-TYPE WORK,
THEY WILL BRING ON RESEARCHERS
AND THEY'LL TRY TO MATCH YOU
WITH STAKEHOLDERS THAT ARE
INTERESTED IN THE TYPE OF WORK.
SO LIKE MATCHING RESEARCHERS
WITH STAKEHOLDERS INTERESTED IN
THE TYPE OF RESEARCH THAT YOU'RE
DOING.
AND THEY'LL DO TRAINING FOR THE
RESEARCHER AND THE STAKEHOLDER
SO ALL STAKEHOLDERS KNOW SYSTEM
AND THE RESEARCHERS ARE A TYPE
OF STAKEHOLDER.
SO THAT EVERYONE KNOWS WHAT THE
ROLES ARE SO THAT EVERYONE
UNDERSTANDS HERE IS WHAT THE
RESEARCHER DOES.
HERE IS WHAT THE OTHER
STAKEHOLDERS DO IN THE RESEARCH.
AND SO, JACKIE HINKLEY HAS IT
FIGURED OUT.
AND PCORI HAS INVESTED A LOT OF
MONEY IN HER TO HELP LAUNCH THIS
EFFORT IN APHASIA.
SO I ENCOURAGE YOU TO LOOK HER
UP.
SHE IS AT NOVA.
REACH OUT TO ME OR SARAH AND WE
CAN KECK CONNECT YOU WITH HER OR
LOOK TO A MENTOR WHO HAS DONE
THIS TYPE OF WORK.
YOU DON'T WANT TO JUST JUMP INTO
IT.
IT'S NOT A MATTER OF TAGGING ON
SOMEONE WHO HAS AUTISM.
IT'S MORE THAN JUST SOMEONE WHO
HAS AUTISM.
IN APHASIA IT CAN BE A STROKE
SURVIVOR.
IT CAN BE A NURSE.
IT CAN BE A PHYSICAL THERAPIST.
IT IS MUCH, MUCH MORE THAN JUST
TAGGING THEM ON TO YOUR
RESEARCH.
I THINK IT'S LEARNING ABOUT HOW
TO DO IT RIGHT SO THAT TO ANSWER
THE QUESTION THAT WAS ASKED.
SO THAT IT CAN BE MEANINGFUL.
IT'S LEARNING HOW TO DO
PARTICIPATORY-BASED RESEARCH.
YOU HAVE TO LEARN HOW TO DO IT.
IT'S A TRUE METHOD.
AND STOW I THINK IT TAKES SKILL
AND IT TAKES SOME LEARNING.
AND IT TAKES SOME TIME.
AND IT'S MOST DEFINITELY WORTH
IT IF YOU THINK ABOUT ALL THAT
WE HAVE JUST HEARD IN RESPONSE
TO THAT QUESTION.
>> I THINK THAT IS GREAT.
[ MULTIPLE SPEAKERS ]
>> I JUST WANT TO MENTION THAT
LAST WEEK'S IACC MEETING WE HAD
A VERY DETAILED PRESENTATION
FROM THE LEADERS OF PCORI, THE
PATIENT-CENTERED ORBIENTED
RESEARCH INSTITUTE, FOCUSING ON
AUTISM, PCORI AUTISM-BASED
RESEARCH.
WHEN THAT IACC MEETING WILL BE
AVAILABLE ON THE WEBSITE, I
DON'T KNOW WHEN, BUT FOR PEOPLE
WHO WANT TO BECOME INFORMED
ABOUT IT, I THINK THAT WILL BE
ANOTHER EXCELLENT RESOURCE.
>> IT'S LIFE CHANGING.
IT WAS CAREER CHANGING FOR ME TO
MAKE THAT SHIFT.
I WANTED TO JUST PUT THAT OUT
THERE.
>> CAN I READ FROM A COUPLE OF
OUR AAC USERS?
AND THEN WE'LL GO TO DAVID.
SO BOB WILLIAMS, AN AAC USER AND
FORMER DIRECTOR OF U.S.
INDEPENDENT LIVING ADMIN AT HHS
ASKED VIA TEXT, THE QUESTION OF
WHETHER THE PARTICIPATION IN
SHAPING RESEARCH BE ASKED IN ANY
OTHER CONTEXT?
SO SOMETHING TO THINK ABOUT.
AND THEN -- I DON'T KNOW THE
ANSWER TO THAT.
BUT I KNOW THAT WE BRING IN
PARTICIPATORY RESEARCH IN ALL OF
OUR RESEARCH WITH VARIOUS
POPULATIONS.
AND I THINK IT IS VERY VALID
HERE, MORE SO MAYBE.
AND THEN HARRY -- I DON'T KNOW
HOW TO PRONOUNCE THE LAST NAME,
AN AAC USER.
HIS MESSAGE IS, CURRENT RESEARCH
PRIMARILY UTILIZES TESTABLE
AUTISTICS.
BUT THESE SOLUTIONS MAY NOT
APPLY TO ALL.
SO WE NEED IMPROVED TECHNOLOGY
AND METHODOLOGIES SO THIS
POPULATION CAN BE PART OF
TESTABLE AUTISTICS AND CAN
PARTICIPATE IN RESEARCH.
SO WE CAN GET TO SOLUTIONS.
IN ADDITION, THERE NEEDS TO BE
RESEARCH IN HELPING THOUSANDS
GROWING INTO ADULTHOOD EVERY
DAY.
DON'T ASSUME THAT IT'S TOO LATE,
TOO OLD FOR COMMUNICATION.
MY SPEAKING SKILLS ARE IMPROVING
AS AN ADULT.
WHILE THERE WAS LITTLE MOVEMENT
DURING CHILDHOOD.
THAT'S SUCH AN IMPORTANT POINT.
IT'S CALLED DEVELOPMENTAL DELAY
FOR A REASON.
A THIRD POINT IS THAT RESEARCH
NEEDS TO BE TRANSLATABLE AND NOT
SET AS EXCITING THEORY IN
PUBLISHED RESEARCH.
SO THANK YOU FOR THOSE COMMENTS,
HARRY.
THOSE ARE REALLY IMPORTANT.
NOW DAVID.
>> THANK YOU.
I JUST WANTED TO SAY AS WE
TALKED ABOUT RECOGNIZING AND
RAISING THE VOICES OF PEOPLE WHO
USE AAC AND RESEARCH ACTIVITIES,
I JUST WANTED TO MAKE PEOPLE
AWARE OF THE WORK OF THE UNITED
STATES SOCIETY FOR AUGMENTIVE
AND ALTERNATIVE COMMUNICATION
WITH THEIR SPEAKER CONNECTION
PROGRAM.
SO THAT'S A PROGRAM THAT IS
DESIGNED TO SUPPORT THE
PARTICIPATION OF PEOPLE WHO USE
AAC, INCLUDING AUTISTIC
INDIVIDUALS IN PRESERVES
PREPARATION.
I THINK IT'S INCREDIBLY POWERFUL
AT BOTH THE UNDERGRADUATE AND
GRADUATE LEVEL.
AND WE ARE CURRENTLY INVOLVED IN
RESEARCH PROJECT AS PART OF THE
RIRC ON AAC, WORKING WITH THE
PARTICIPATORY RESEARCH PARADIGM
TO LOOK AT WHAT ARE THE SUPPORTS
AND BARRIERS TO PEOPLE WHO USE
AAC PARTICIPATING IN PRESERVES
TRAINING?
AND TO GET TO THE POINT OF THE
CHALLENGES OF THIS TYPE OF
PROJECT, IT'S REALLY OPENED MY
EYES TO SOME OF THE SYSTEMIC
BARRIERS THAT EXIST TO THE
PARTICIPATION OF PEOPLE WHO USE
AAC IN THESE TYPES OF RESEARCH
ACTIVITIES.
PROVIDING FUNDING MECHANISMS.
THESE INDIVIDUALS PASSING THE
BARRIERS OF EXIST WITHIN THE
UNIVERSITY SYSTEM IN ORDER TO BE
A PART OF RESEARCH TEAM.
SO AGAIN, I'D ENCOURAGE YOU TO
TAKE A LOOK AT THE PROGRAM
PROVIDED TO TRY TO INCREASE THE
PARTICIPATION THAT USE AAC TO
INCREASE THE PREPARATION
PROGRAMS.
>> GREAT.
ZACK?
>> I ALSO LIKE TO MENTION THERE
ARE OTHER USES OF PARTICIPATORY
RESEARCH BEYOND SIMPLY
INCORPORATING THE LIVED
EXPERIENCES INTO JUST THE
RESEARCH PROCESS.
BUT BEYOND THAT, THERE ARE SORT
OF FURTHER VALIDATIONS OF
METHODOLOGIES.
ONE THING THAT I THINK IS QUITE
OFTEN NOT QUITE THOUGHT OF AS A
PARTICIPATORY RESEARCH PROCESS
IN THE WAY THAT IT IS DONE, BUT
IT'S ESSENTIALLY THAT IS THE
KIND OF USABILITY TEST.
OR HAVING SAY AN AUTISTIC PERSON
OR A FAMILY MEMBER OR SOME OTHER
END USER OF A TECHNOLOGY, OF A
MEASUREMENT INSTRUMENT, OF
SOMETHING LIKE THAT, BE ON THE
RESEARCH TEAM AND BE A PART OF A
CODESIGN.
BUT THIS CAN TAKE A CONSULTATION
ROLE AND THAT'S THIS COULD BE A
MUCH MORE HIGH-LEVEL.
THIS PERSON IS A COREACHER.
AND THERE ARE ALL SORTS OF
LEVELS OF THAT.
EXBUT IT'S SOMETHING AS SIMPLE
AS DOING THE THINK ALLOWED
COGNITIVE INTERVIEW.
REALLY PART OF THE PARTICIPATORY
RESEARCH METHODOLOGY IN SOME
SENSE.
AND THIS IS REALLY IMPORTANT AND
OFTEN NOT DONE.
AND SO, DOING THESE SORTS OF
THINGS TO JUST GET AT, WHAT IS
THE EXPERIENCE OF INTERACTING
WITH THESE TOOLS?
AND AGAIN, FOR SUCH A TECHNOLOGY
HEAVY SUBFIELD OF AUTISM
RESEARCH, THIS IS EXTREMELY
IMPORTANT BECAUSE WE HAVE SO
MANY END USERS DEALING WITH SO
MANY DIFFERENT TYPES OF TACT IN
QUALITATIVE WAYS THAT ARE GOING
TO BE NOT I THINK THINGS WE AREO
BE ABLE TOL QUANTIFY.
AND SAY THIS IS WORKING BETTER
THAN THIS IN SUCH AND SUCH A
WAY.
WE NEED TO UNDERSTAND PEOPLE'S
FIRST PERSON EXPERIENCES.
AND HAVING THAT AND FROM
MULTIPLE PERSPECTIVES FROM THE
FAMILY MEMBER FROM THE
PERSPECTIVE OF THE CLINICIAN,
FROM THE ENGINEER PUTTING THIS
TOGETHER.
IS THIS FEASIBLE IN XY OR Z WAY?
AND HAVING ALL OF THOSE
DIFFERENT STAKEHOLDERS BE
PASSIONATE OF THE PARTICIPATORY
RESEARCH PROCESS.
I CAN'T IMAGINE A WORLD IN WHICH
THAT WOULDN'T BRING EXTRA VALUE
TO THE RESEARCH PROCESS.
>> I COULDN'T AGREE WITH YOU
MORE.
AND IN FACT, HIRING PEOPLE IN
YOUR LAB AS WE HAVE PEOPLE IN
THE LAB WITH AUTISM AND LEARN
EVERY SINGLE DAY FROM THEM.
SO I THINK IT IS REALLY
IMPORTANT TO NOT JUST BRING THEM
ON AS CONSULTANTS BUT BRING THEM
ON AS EMPLOYEES AND
COLLABORATORS.
SO GOOD POINT.
JUDITH?
>> WE ARE APPROACHING THE 5:00
HOUR FOR SOME OF US AND FOR
THOSE OF YOU WHO ARE IN NEW
ZEALAND OR ENGLAND OR OTHER
PLACES, I THINK IT'S WAY PAST
BEDTIME.
I HAVE TO SAY, THIS HAS BEEN AN
ABSOLUTELY SUPERB AFTERNOON.
IT WAS ALL AND MORE THAN WE HAD
HOPED FOR.
SO, MANY THANKS TO ALL OF YOU.
I EXPECT TO YOU COME BACK
TOMORROW AFTERNOON.
I THINK THE WEBCAST LINK IS ON
THE INFORMATION THAT YOU HAVE
AND IT'S THE SAME ZOOM LINK THAT
YOU USED TODAY FOR THOSE WHO ARE
ON THE ZOOM.
SO, PLEASE DO COME BACK.
WE HAVE MUCH MORE TO COVER THAT
WE HINTED AT TODAY AND WE HEARD
A LITTLE BIT ABOUT TODAY.
BUT I'M REALLY LOOKING FORWARD
TO TOMORROW.
>> I HAD A LOGISTICS QUESTION.
SO SORRY TO BOTHER YOU.
DO WE SWITCH THE ORDER?
>> NO WE DID NOT.
>> THANK YOU VERY MUCH.
>> IF YOU LOOK ON THE --
>> I'LL BE HERE THE WHOLE TIME
BUT I WANTED TO MAKE SURE.
>> AND IF YOU HAVE ANY
QUESTIONS, LOOK ON THE WEBSITE
OR LOOK ON THE NIH VIDEOCAST
WEBSITE.
IT HAS THE LINK TO THE VERY MOST
CURRENT AGENDA.
>> AND IT WILL BE ARCHIVED.
SOMEBODY WANTED US TO SAY THAT
THE VIDEOCAST WILL BE ARCHIVED
SO YOU CAN WATCH IT LATER TOO.
>> YES.
ABSOLUTELY.
THEY SAID MAYBE WITHIN A WEEK OR
TWO, DEPENDS ON WHAT KIND OF
EDITING THEY MIGHT HAVE TO DO.
THE ARCHIVE WILL BE AVAILABLE.
WITH THAT, THANK YOU ALL AND WE
WILL SEE YOU TOMORROW AFTERNOON
1:00 EASTERN TIME.
>> THANK YOU, BYE-BYE.