>>WELCOME TO DAY 2
BE PATIENT RESPECTING THE
ADDITIONAL TIME NEEDED TO
FORELATE A MESSAGE AND MOST
IMPORTANTLY, PLEASE DO NOT SPEAK
OVER THEM.
POINT 3, IF YOU WILL SHOW THE
SLIDE, PLEASE.
FOR THOSE OF YOU WHO NEED A
CURRENT AGENDA, YOU CAN FIND IT
ON THE NIDCD WEBSITE AT THIS
LINK.
AND ALSO I THINK IT IS ATTACHED
TO THE VIDEOCAST.
IF YOU HAVE TECHNICAL PROBLEMS,
WE ARE GIVING YOU TWO NAMES.
YOU CAN EITHER E-MAIL TANJI OR
CALL CHRIS ADAMS AT THAT PHONE
NUMBER.
AND, I GUESS A FINAL COMMENT
WHILE TAN GEE IS TAKING THAT
SLIDE DOWN.
I WANTED TO SAY THANKS AGAIN TO
ALL OF YOU FOR YOUR
PARTICIPATION IN AND YOUR INPUT
AND WE ARE READY TO GET STARTED.
AND I THINK AS WE MOVE INTO, AS
WE DID YESTERDAY, IF YOU'RE NOT
SPEAKING, PLEASE TURN YOUR
CAMERA OFF AND PLEASE MUTE.
AND THEN THE SPEAKERS SHOULD
APPEAR AT THE TOP OF THE SCREEN.
SO, I'M TURNING IT OVER TO
CONNIE.
>>CONNIE KASARI: I'M LOOKING
FORWARD TO A EXCITING AND RICH
DISCUSSION TODAY.
WE ARE GOING TO START OFF WITH
SESSION 2, RESEARCH DESIGNS,
METHODS FOR INTERVENTION
STUDIES.
WE ARE GOING TO START WITH AN
OVERVIEW OF COMBINED TREATMENTS
BY LARRY SCAHILL.
>>LARRY SCAHILL: YOU'RE MUTED,,
AND WE SUCCESSFULLY DID THIS A
MINUTE AGO.
>>JUDITH COOPER: WE DON'T HEAR
YOU.
YOUR ICON IS NOT CLICKED.
>>FELICE: WE'LL SEE WHAT WE CAN
DO.
GIVE ME ONE SECOND TO LOOK FOR
HIM.
I CAN ONLY ASK HIM TO UNMUTE
HIMSELF.
I CAN'T DO IT.
>>CONNIE KASARI: I'M WONDERING
IF WE CAN TAKE AWAY THE BOXES
EXCEPT FOR THE PEOPLE WHO ARE IN
THIS SESSION THAT WILL HAVE
THEIR CAMERAS ON?
THAT MIGHT BE LESS DISTRACTING.
LARRY, IF THERE IS SOMETHING I
CAN DO TO HELP, LET ME KNOW,
ALTHOUGH I'M PROBABLY THE LEAST
TECHNOLOGICALLY ADVANCED IN THIS
GROUP.
>>FELICE: I DON'T KNOW IF HE
CAN HEAR YOU.
CAN YOU HEAR US?
>>JUDITH COOPER: I CAN'T SEEM
TO GET RID OF THE BLACK BOX ON
THE SCREEN.
CHRIS, IS THAT YOU?
>>FELICE: YOU DID IT FOR YOUR
WORKSTATION.
YOU CAN'T DO IT FOR EVERYONE.
>>CONNIE KASARI: I SEE.
>>JUDITH COOPER: SO IF I STOP
MY VIDEO, DOES THAT HELP?
LET ME SEE.
>>FELICE: IT WOULDN'T MATTER.
I WOULD RECOMMEND THAT HE GO OUT
AND COME BACK IN, IF HE HAS A
PROBLEM.
>>CONNIE KASARI: DID YOU HEAR
THAT?
CAN YOU GO OUT AND START OVER
AGAIN?
>>JUDITH COOPER: HE HAS ANOTHER
CAMERA.
NOW LARRY, CAN YOU SPEAK?
>>LARRY SCAHILL: I JUST
RETREATED TO LAPTOP.
THERE WAS A BOX COVERING THE
PLACE WHERE YOU USUALLY SEE THE
UNMUTE BUTTON.
IT SAYS TYPE HERE FOR SEARCH.
LET'S SEE IF THIS WORKS.
>>CONNIE KASARI: GREAT, I SEE
YOUR SCREEN.
BUT WE DON'T WANT THAT.
>>LARRY SCAHILL: HOW IS THAT?
LET'S GET THIS GOING.
SO I HAVE ABOUT NINE SLIDES AND
I'LL TRY TO TALK FAST AND TRY
NOT TO REHASH.
BUT, USUAL STATEMENT ABOUT
DISCLOSURES AND I'M WELL-TRAINED
WELL-TRAINED.
AND SO -- THIS IS A WONDERFUL
META-ANALYSIS BY MICHAEL AND
COMPANY.
I WON'T GO INTO DETAIL.
I WANT TO MAKE A COUPLE OF
POINTS BECAUSE IT'S A STEP UP TO
WHERE WE ARE GOING.
FAIRLY LARGE SAMPLE, 60 STUDIES.
OVER ALL SMALL BUT SIGNIFICANT
EFFECT OF LANGUAGE.
NOW THIS IS LANGUAGE
ACROSS-THE-BOARD, NOT JUST
MINIMALLY VERBAL.
BUT NOTICE, LOWER AGE EQUIVALENT
SCORES, WEAKER EFFECTS.
WE ARE NOT DOING VERY WELL.
INTERVENTION INTENSITY, DOSE,
TYPE OF TREATMENT, AUTISM
SEVERITY, CHRONOLOGICAL AGE,
DIDN'T SEEM TO MATTER.
WHAT DID SEEM TO MATTER IS
WHETHER IT WAS DELIVERED BY A
CLINICIAN OR A CLINICIAN+
CAREGIVER.
I JUST MENTIONED THROUGH A
HAMPTON AND KAISER, THEIR
ANALYSIS, META-ANALYSIS SHOWED
SIMILAR RESULTS BUT THE LARGEST
EFFECT WAS CLINICIAN PLUS
CAREGIVER.
SO, I'M TALKING ABOUT COMBINED
TREATMENTS.
I'M NOT GOING TO TALK ABOUT STEP
WEDGE AND MOST DESIGN, SMART
DESIGN.
I'M NOT GOING TO TALK ABOUT ANY
OF THAT.
I'LL LEAVE THAT TO OTHERS.
BUT I WANT TO EMPHASIZE THAT I
THINK IT'S TIME TO MOVE TO
COMBINED TREATMENTS.
AND I HOPE TO SELL THE IDEA.
I'M GOING TO GIVE A FEW
EXAMPLES.
THOSE EXAMPLES ARE NOT TO
PERSUADE JUST TO ILLUSTRATE.
WHAT THE META-ANALYSIS SHOWED,
OUR MAJOR FAULTS HAVE BEEN.
MANY STUDIES IN THE 60 STUDY
META-ANALYSIS, THEY DID NOT USE
BLINDED ASSESSMENT.
OFTENTIMES NOT CLEAR ENTRY
CRITERIA.
STILL BIG VARIABILITY.
AND A LOT OF ATTRITION.
LOTS OF MISSING DATA.
AND IT TURNS OUT THAT MANY OF
THESE RANDOMIZED TRIALS DID NOT
USE INTENT TO TREAT ANALYSIS.
SO, DO WE NEED TO TALK ABOUT NEW
DESIGNS OR DO WE NEED TO TALK
ABOUT MULTIMODAL TREATMENTS?
I'M RIGHT NOW I'M THE LATTER.
STUDY OF COMBINED TREATMENTS
DOES NOT INHERENTLY MEAN YOU
HAVE TO HAVE MORE COMPLICATED
DESIGNS.
IN FACT, STUDYING COMBINED
TREATMENTS IS CHALLENGING
ENOUGH.
SO, STRAIGHTFORWARD DESIGNS,
COMPLICATED BY COMBINED
TREATMENTS.
THIS IS MY FIRST FORAY INTO THIS
IDEA OF COMBINING MODALITIES.
SO THIS CAME FROM A PRACTICE
GROUP OF THE ASSOCIATION OF
BEHAVIOR ANALYSIS INTERNATIONAL.
I WON'T GO INTO THE CRAZY DETAIL
OF THIS SLIDE.
BUT YOU CAN SEE THAT THEY ARE
ADVANCING IN THIS WHITE PAPER
THE IDEA THAT SPEECH-LANGUAGE
PATHOLOGISTS AND BEHAVIOR
ANALYSTS BRING SOMETHING UNIQUE
AND IMPORTANT THAT COULD
ACTUALLY BE BLENDED.
AND TO THE BETTERMENT OF AN
INTERVENTION.
WE ARE DOING A PILOT STUDY HERE
OF WHERE WE ARE TRYING TO SEE
WHAT ADDED VALUE THERE CAN BE --
ABAI BASED LANGUAGE INTERVENTION
FOR MINIMALLY VERBAL CHILDREN
WITH ADDITIONAL CONSULTATION
FROM A SPEECH-LANGUAGE
PATHOLOGIST.
SO ANOTHER WAY TO THINK ABOUT
THIS IS LANGUAGE INTERVENTION
PLUS DRUGS.
OUTSIDE OF THE WORLD OF LANGUAGE
INTERVENTION AND THE WORLD OF
ANXIETY AND IN THE GENERAL
PEDIATRIC POPULATION, DEPRESSION
IN THE GENERAL PEDIATRIC
POPULATION.
AND IN AUTISM IN DISRUPTIVE
BEHAVIOR.
THERE IS MILEAGE FOR COMBINING
BEHAVIORAL INTERVENTIONS WITH
DRUGS.
SO, I'M SURE EVERYBODY IS AWARE
OF THE PAPER THAT WAS PUBLISHED
IN THE FALL OF 21 ON INTERNASAL
OXYTOCIN.
A LARGE STUDY THAT SHOWED
ABSOLUTELY NOTHING.
AND OUT OF THIS -- PART OF THIS
QUOTE IS CUT OFF.
THIS IS FROM LARRY YOUNG AND
CHARLES FORD IN AN EDITORIAL
THEY WROTE AFTERWARDS.
HE SAID THAT THEY FOUND NO
EFFECT, NO SURPRISE TO THEM
BECAUSE OXYTOCIN DOES NOT
FACILITATE LEARNING ALL BY
ITSELF.
IN FUTURE TRIALS, OXYTOCIN
SHOULD BE PAIRED WITH BEHAVIOR
THERAPY.
AND HERE IS AN EDITORIAL BY DAN
GIVEN WIND IN THE NEW ENGLAND
JOURNAL AND THE SAME ISSUE.
HE SAID, MAYBE THEY HAD TOO WIDE
OF AVERAGE RANGE AND MAYBE THEY
NEED BETTER MEASUREMENT BUT
OXYTOCIN WAS NOT PAIRED WITH
BEHAVIORAL INTERVENTION.
HE IS SAYING DON'T GIVE UP ON
OXYTOCIN JUST YET, POINTING TO
THE IDEA OF COMBINED TREATMENT.
HERE IS POSSIBLE COMBINATION.
AGAIN, IT'S AN EXAMPLE.
IT'S NOT -- NOT TRYING TO PER
ZAID.
BUT RICHARD FRY AND COMPANY
PUBLISHED A PAPER ON LEUKOBORE
IN THAT SHOWED IMPROVEMENT IN
VERBAL COMMUNICATION.
I WILL ADD THESE WERE NOT
MINIMALLY VERBAL CHILDREN BUT IT
WAS SUPERIOR TO PLACEBO USING A
STANDARDIZED LANGUAGE OUTCOME
MEASURE.
AND WE DID A STRUCTURED
INTERVENTION WITH A VERY SIMILAR
POPULATION, MODERATE LANGUAGE
DELAY, SHOWING THAT THIS
STRUCTURED INTERVENTION WAS
BETTER THAN TREATMENT AS USUAL.
WHY NOT COMBINE THEM?
AGAIN, NOT PERSUADE THIS
PARTICULAR IDEA BUT JUST THE
IDEA.
SO, POSSIBLE COMBINATIONS.
LANGUAGE INTERVENTION.
YOU KNOW THE LIST.
DELIGHTED TO HEAR SO MUCH
YESTERDAY ABOUT THE USE OF
AUGMENTED DEVICES.
I THINK THEY HAVE COME A LONG
WAY SINCE I FIRST HEARD ABOUT
THEM 20 YEARS AGO.
AND BUT WHAT COULD THING A
MENITATION STRATEGY BE?
IT COULD BE A DRUG.
IT COULD BE YOU HAVE A LANGUAGE
INTERVENTION AND YOU ADD
AUGMENTED COMMUNICATION, OR
WONDERFUL THINGS WE HEARD ABOUT
TECHNOLOGY WITH THE USE OF APPS
AND OTHER THINGS AS A ADDITIVE
TO THE LANGUAGE INTERVENTION.
THANK YOU.
>>CONNIE KASARI: THANK YOU.
YOU WERE SPOT ON TIME WISE,
LARRY.
THANK YOU.
SO NOW YOU HAVE TO STOP SHARING
AND WE'RE GOING TO MOVE TO THE
NEXT TALK, WHICH WILL BE DANIEL
ALMIRALL TALKING ABOUT
MULTILEVEL ADAPTIVE
INTERVENTIONS, OPTIMIZING HOW WE
TAILOR INTERVENTION TO THE
UNIQUE AND CHANGING NEEDS OF
EACH INDIVIDUAL AND THEIR
ENVIRONMENT.
I SHOWED THIS YESTERDAY.
>>DANIEL ALMIRALL CAN YOU HEAR
ME?
CAN YOU SEE THE SLIDES I'M
PUTTING UP RIGHT NOW AND THEN
HOW ABOUT NOW?
>>CONNIE KASARI: NOW WE SEE --
NOW WE SEE IT.
OKAY.
GOOD.
>>DANIEL ALMIRALL: I GOT 7
MINUTES READY GO!
MY GOAL IS TO INTRODUCE THIS
IDEA OF ADAPTIVE INTERVENTIONS
AND I'M GOING TO GO IN 7 MINUTES
FROM THE PAST STRAIGHT THROUGH
THE FUTURE.
OKAY?
HERE WE GO.
SO HERE IS WHAT I'M GOING TO TRY
TO DO IN 7 MINUTES.
I'M GOING TO SHOW YOU AN EXAMPLE
OF AN OLDER ADAPTIVE
INTERVENTION IN AUTISM.
YOU SAW A LITTLE BIT ABOUT IT
YESTERDAY.
I'M GOING TOY SHOULD YOU AN
EXAMPLE OF AN OLDER SEQUENTIALLY
RANDOMIZED TRIAL THAT WAS USED
TO OPTIMIZE THIS ADAPTIVE
INTERVENTION AND THEN I'M GOING
TO SPEND THREE SLIDES ON WHAT I
THINK THE FUTURE IS AND IT'S
PRETTY EXCITING.
ALL RIGHT.
SO, I THINK YOU MIGHT HAVE SEEN
THIS YESTERDAY.
SO THE SETUP HERE IS, THESE ARE
CHILDREN WITH AUTISM WHO ARE
MINIMALLY VERBAL.
THAT'S THE PHRASE WE WERE USING
AT THE TIME.
I KNOW YESTERDAY WE WERE HAVING
CONVERSATIONS ABOUT THINKING
MORE CAREFULLY ABOUT THE
LANGUAGE AROUND THIS.
AND IN THIS PARTICULAR ADAPTIVE
INTERVENTION, THIS IS NOT A
STUDY I'M SHOWING YOU.
THIS IS AN INTERVENTION A
CLINICIAN WOULD DO.
WE WOULD PROVIDE IN STAGE I SOME
INTERVENTION.
IN THIS EXAMPLE, IT'S JASPER.
AND THEN WE WOULD ASSESS
RESPONSE STATUS AT THE END OF 12
WEEKS USING SOME TOOL THAT IS
ALSO A PART OF INTERVENTION.
THAT'S KEY, OKAY?
WE CALL THAT A TAILORING
VARIABLE.
IN THIS PARTICULAR EXAMPLE, IF
THE KID WAS A RESPONDER, WE STAY
THE COURSE WITH JASPER.
BUT IF THE KIDDO IS A SLOWER
RESPONDER, WE MIGHT AUGMENT
WITH, IN THIS CASE, IT WAS USING
A DEVICE BUT YOU COULD IMAGINE
ADAPTIVE INTERVENTIONS LIKE THIS
TAILORING USING OTHER
INTERVENTION OPTIONS SUCH AS
MEDICATION, WHICH IS WHAT LARRY
WAS JUST TALKING ABOUT, OR EVEN
OTHER BEHAVIORAL INTERVENTIONS.
BUT MY PURPOSE IN THESE 30
SECONDS WAS TO EXPLAIN WHAT IS
AN ADAPTIVES INTERVENTION IN 30
SECONDS?
THIS IS AN EXAMPLE OF, IT
DOESN'T EVEN HAVE TO BE TWO
STAGES.
IT COULD BE 5 STAGES AND ALL THE
KIDDOS DON'T EVEN NEED TO
TRANSITION ALL AT 12 WEEKS.
WE MIGHT HAVE SOME KIDDOS
TRANSITIONING EARLIER VERSUS
LATER, DEPENDING ON HOW THEY ARE
DOING.
THE SKY IS THE LIMIT.
NEXT SLIDE.
THOSE OF YOU ON THE CALL
MIGHT -- AND ESPECIALLY NIH, WE
HAVE TO THINK VERY CAREFULLY
ABOUT THE THREE DIFFERENT WAYS
WE CAN STRUCTURE RESEARCH ON
ADAPTIVE INTERVENTION SYSTEM.
ONE GROUP OF PEOPLE, EARLY-STAGE
INVESTIGATORS MIGHT BE IN THE
PILOTING FEASIBILITY
ACCESSIBILITY STAGE.
A SECOND GROUP OF INVESTIGATORS
MIGHT BE IN THE OPTIMIZING STAGE
AND A THIRD GROUP OF
INVESTIGATORS MIGHT BE READY TO
EVALUATE AN ADAPTIVE
INTERVENTION.
THEY HAVE SOMETHING LIKE THIS IN
THEIR HANDS AND THEY ARE READY
TO SAY, JUST LIKE LARRY SAID,
THEY ARE READY TO SAY, IS THIS
BETTER THAN TREATMENT AS USUAL?
I WANTED TO SHOW YOU NUMBER 3
FIRST BECAUSE ALL OF YOU KNOW
HOW TO DO NUMBER 3.
IF WE WERE DOING NUMBER 3, WITH
THE ADAPTIVE INTERVENTION I
SHOWED EARLIER, THIS WOULD BE A
VANILLA BUT VERY IMPORTANT, VERY
POWERFUL RANDOMIZED TRIAL WHERE
I WOULD COMPARE MY ADAPTIVE
INTERVENTION VERSUS SOME
TREATMENT AS USUAL.
NOTHING WRONG WITH THIS.
IT'S IMPORTANT AND IT REMAINS
THE GOLD STANDARD FOR
EVALUATION.
BUT WHAT IF YOU'RE IN THE SECOND
GROUP?
WHAT IF YOU WANT TO OPTIMIZE?
THERE YOU WANT TO REACH FOR A
DIFFERENT KIND OF TRIAL DESIGN.
ONE OF THE BIGGEST PROBLEMS WE
HAVE IN OUR SCIENCE IS EVERYBODY
REACHES FOR A RANDOMIZED TRIAL
DESIGN TO ANSWER ALL QUESTIONS
UNDER THE SUN BUT THAT SHOULD
NOT BE THAT WAY.
SO HERE IS ONE OF MANY TOOLS YOU
CAN REACH FOR IS CALLED THE
SMART.
AND HERE IS A SMART THAT WE USED
TO COME UP WITH THE ADAPTIVE
INTERVENTION WE SHOWED YOU
ERPER, OR ONE LIKE IT.
THIS IS AN OLD STUDY NOW.
YOU SEEN ME GIVE TALKS ON THIS
FOR YEARS, BUT IT'S IMPORTANT
BECAUSE IT BRINGS YOU UP TO
SPEED BEFORE I TELL YOU WHAT THE
FUTURE WILL BE.
IN THIS STUDY, WE RANDOMIZED
KIDDOS AT STAGE 1 TO WHETHER OR
NOT YOU, IN THE CONTEXT OF
JASPER, ALL THE KIDDOS GET
JASPER, TO WHETHER OR NOT YOU
GET THE DEVICE, AT STAGE I.
WE WANTED TO KNOW AS A NISHANCE,
DO ALL THE KIDS NEED THE DEVICE
RIGHT OUT OF THE GATES?
IF YOU DID NOT GET THE DEVICE
AND YOU WERE A SLOWER RESPONDER,
DO WE NEED TO ADD THE DEVICE
LATER?
SO WHAT ENDS UP HAPPENING IN A
STUDY LIKE THIS, WE HAVE THREE
INTERVENTIONS.
WE HAVE ONE WHERE YOU NEVER GET
THE DEVICE BUT IF YOU'RE SLOW
RESPONDING, YOU AUGMENT WITH
JASPER.
YOU GO FROM 2-3 SESSIONS PER
WEEK.
WE HAVE A SECOND INTERVENTION
WHERE YOU GET THE DEVICE
UPFRONT.
AND IF YOU'RE NOT DOING SO GOOD,
YOU GO FROM 2-3 SESSIONS PER
WEEK.
AND THEN WE HAVE A THIRD PRE
SENSION WHERE YOU DON'T GET THE
DEVICE UPFRONT AND YOU GET THE
DEVICE LATER IF YOU'RE A SLOW
RESPONDER.
I THINK YOU ALL HAVE READ THIS
ARTICLE.
THESE WERE TOOLS AT THE TIME WE
WERE USING.
THEY ARE OLDER NOW BUT STILL
VERY NOVEL.
AND HERE WE SHOWED PRETTY
CLEARLY THAT INTRODUCING THE
DEVICE EARLY AND INTENSIFYING
GOING FROM 2-3 WEEKS FOR KIDDOS
THAT ARE NOT -- THAT AREN'T
RESPONDING AS WELL, WAS THE
BETTER INTERVENTION TO IMPROVE
LANGUAGE OUTCOMES.
OKAY, WHAT IS THE FUTURE OF
ADAPTIVE INTERVENTIONS IN
AUTISM?
I GOT TWO SLIDES LEFT.
IN MY OPINION, WEED WANT TO GET
SERIOUS ABOUT WHAT I CALL,
MULTILEVEL ADAPTIVE
INTERVENTIONS.
I'LL SHOW YOU KIND OF WHAT I
MEAN BECAUSE IT'S THE FUTURE, I
DON'T REALLY HAVE A CONCRETE
EXAMPLE BUT WE NEED TO GET
SERIOUS ABOUT THIS.
HOW DO WE THINK ABOUT THE
ADAPTIVE INTERVENTION CONCEPT WE
SHOWED A FEW MINUTES AGO.
HOW DO WE THINK ABOUT THAT AT
MULTIPLE LEVELS IN THE KIDDO'S
LIFE?
SO FOR EXAMPLE AT THE LEVEL OF A
SCHOOL.
AT THE LEVEL OF THE CLASSROOM,
AT THE LEVEL OF THE FAMILY.
JUST LIKE LARRY SAID, WE ARE
MOVING DIFFERENT TREATMENTS USED
AT DIFFERENT LEVELS.
HOW DO YOU DO THAT ADAPTIVELY?
THAT IS THE FUTURE.
A SECOND FUTURE IS, HOW DO WE
THINK ABOUT ADAPTIVE
INTERVENTIONS IN REALTIME?
JUST IN TIME ADAPTIVE
INTERVENTIONS.
SO DELIVERED THROUGH DICES,
MOBILE DEVICES.
AND THEN MULTIMODAL ADAPTIVE
INTERVENTIONS IS WHEN THOSE TWO
WORLDS COLLIDE.
YOU CAN IMAGINE IN BETWEEN
CLINIC VISITS, IN BETWEEN CLINIC
VISITS, THE KIDDO MIGHT BE
WORKING WITH A DEVICE AT HOME
THAT IS IN BETWEEN THE CLINIC
VISITS INTERVENING IN REALTIME
TO IMPROVE THEIR OUTCOMES AND
QUALITY OF LIFE.
SO, IN THE MULTILEVEL ADAPTIVE
INTERVENTION WORLD, IMAGINE
PLAYGROUND INTERVENTIONS,
CLASSROOMS AND INDIVIDUAL
LEVELS.
WE HAVE THEM.
WE JUST HAVEN'T PUT THEM
TOGETHER INTELLIGENTLY.
AND THEN IN THE JUST IN TIME
WORLD, WE HAVE THE DEVICES,
BELIEVE IT OR NOT, THAT IS OLD
NOW.
WE KNOW WE CAN SENSOR IN
REALTIME BUT THE QUESTION IS,
HOW DO WE DELIVER INTERVENTIONS
IN REALTIME INTELLIGENTLY AND
ADAPTIVELY TO THE NEEDS OF THE
KIDDO OR THEIR FAMILY?
THANK YOU VERY MUCH FOR YOUR
TIME TODAY.
>>CONNIE KASARI: WOW.
I ALWAYS GET EXCITED WHEN YOU
TALK AND I WANT TO KEEP
LISTENING.
BUT, THAT WAS UNDER 7 MINUTES.
>>DANIEL ALMIRALL NOW WE CAN
KEEP GOING WITH OTHER PEOPLE WHO
MIGHT HAVE TO GO A LITTLE
LONGER.
>>CONNIE KASARI: YES, WE HAVE A
LOT OF EXCITING THINGS TODAY.
SO NEXT WE HAVE BIRDIE GANZ WHO
WILL TALK ABOUT RIGOROUS
REPORTING IN SINGLE-CASE
EXPERIMENTS ON AAC INTERVENTIONS
FOR MINIMALLY VERBAL
NON-SPEAKING PEOPLE WITH AUTISM.
WE HEARD A LITTLE BIT OF A PUSH
YESTERDAY FOR THINKING ABOUT
THESE SINGLE CASES.
SO I'M REALLY HAPPY YOU'RE HERE
TO TELL US ABOUT THIS.
>>BIRDIE GANZ: I HAVE 30
SLIDES.
I HAVE A STOP WATCH GOING AND
I'LL BE LOOKING FOR THE HOOK IF
IT'S NECESSARY.
THANKS FOR HAVING ME.
I'M THRILLED TO BE A PART OF
THIS VERY PRESTIGIOUS AND GROUP
AND ESPECIALLY THAT YOU HAVE
INVITED SO MANY SHAREHOLDERS TO
PARTICIPATE.
STOW WHAT I'M GOING TO TALK
ABOUT TODAY IS THE QUALITY AND
EVIDENCE OF THE SINGLE-CASE
RESEARCH BASE ON AAC
INTERVENTIONS FOR MOSTLY FOR
FOLKS WITH AUTISM AND
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES AND SOMETIMES I'LL
NARROW IN ON JUST AUTISM.
THIS IS FUNDED BY THE INSTITUTE
OF EDUCATION AND SCIENCES.
MY BACKGROUND IS IN SPECIAL
EDUCATION SO MOST OF MY FUNDING
COMES FROM THE DEPARTMENT OF
EDUCATION.
SO SINCE I AM TALKING QUICKLY, I
DID -- HERE IS A LINK.
IF YOU WANT TO TAKE A CLOSER
LOOK AT THE SLIDES OR IF I HAVE
TO HURRY THROUGH SOME THEN YOU
CAN GO THERE.
OR THE QR CODE SHOULD TAKE YOU
THERE AS WELL.
AND I ALSO -- FOR MY OWN
PERSONAL WELLNESS, ALL THE
PICTURES ARE OF PLACES I REALLY
LOVE.
SO I MADE THE CLEAN VERSION SO
IT WILL BE A LITTLE BIT EASIER
TO READ IF YOU'RE HAVING
DIFFICULTY READING.
SO, AS OTHER PEOPLE HAVE
MENTIONED NONE OF THIS WORK CAN
BE DONE ALONE.
AND THIS IS A GROUP OF, A LARGE
GROUP OF PEOPLE WHO CONTRIBUTED
TO THIS META-ANALYSIS AND
SYSTEMATIC REVIEW AND I WANT TO
ESPECIALLY THANK JAMES.
ALL THE BEAUTIFUL FIGURES AND
THINGS THAT I'LL SHARE -- I'M
ALREADY TWO MINUTES IN.
OKAY, LET'S GO.
OKAY.
SO THIS JUST VERY BRIEFLY IS --
I'M NOT GOING TO TALK TOO MUCH
ABOUT METHODOLOGY BECAUSE OF
TIME.
BUT THIS IS BASICALLY WHAT WE
DID AS FAR AS NARROWING DOWN TO
THE SINGLE CASE EXPERIMENTS THAT
WERE INCLUDED IN THIS PROJECT.
SO I'M GOING TALK ABOUT FOR
WHOM -- FROM THIS LITERATURE
WHAT IS THE SINGLE CASE
LITERATURE BASE SAY ABOUT FOR
WHOM AAZ EFFECTIVE AND I'LL TALK
ABOUT WHAT DO WE NEED TO DO IN
THE FUTURE TO MAKE IT EASIER FOR
MEHTA ANALYSTS LIKE ME TO
SYNTHESIZE THIS LITERATURE AND I
SHOULD ALSO SAY THAT I AM A
SINGLE CASE RESEARCHER SO, I
HOPE NOBODY TAKES ANY OF THIS
NEGATIVELY.
I'M ALSO CRITICIZING MY OWN WORK
AS WELL.
SO AS SOME FOLKS TALKED ABOUT
YESTERDAY, WE HAVE A REAL LACK
OF DIVERSITY IN THIS RESEARCH
BASE.
WHEN WE LOOKED MORE CLOSELY, FOR
THE MOST PART, THEY DID NOT
SPECIFY WHAT THE RACE WAS OF THE
PARTICIPANTS IN THE STUDIES.
WHEN THEY DID, THEY WERE MOSTLY
WHITE PARTICIPANTS.
THEY DIDN'T SPECIFY THE
ETHNICITY, NOT REPORTED VERY
OFTEN.
A VERY SMALL PROPORTION WERE
FROM LATINX BACKGROUNDS AND THE
STUDIES DON'T OFTEN REPORT HOME
LANGUAGE.
WHEN THEY DO, IT'S USUALLY
ENGLISH OR STUDIES THAT WERE
PUBLISHED IN ENGLISH-DOMINANT
SETTINGS.
SO THIS IS A REAL PROBLEM.
THIS IS JUST ALSO A LITTLE BIT
MORE DETAILED OVERVIEW OF WHO
WAS INCLUDED IN THESE STUDIES
THAT WE'RE REPORTING ON.
MOST OF THE PARTICIPANTS HAD
AUTISM OR AUTISM AND
INTELLECTUAL DISABILITY.
AS YOU CAN SEE, THE AGE RANGES
OF THE PARTICIPANTS, IT WAS
MOSTLY UNDER 10.
SO WE HAD A REAL GAP IN THE
LITERATURE PERTAINING IN THE
SINGLE CASE LITERATURE FOR SURE,
PERTAINING TO ADOLESCENTS AND
ALSO TO ADULTS.
LET ME GO AHEAD AND MOVE
FORWARD.
ONE THING I CAN SAY OVERALL IS
THAT AAC INTERVENTIONS ARE
EFFECTIVE ACROSS AGES REGARDLESS
OF WHETHER OR NOT SOMEBODY HAD
SYMBOLIC LANGUAGE TO BEGIN WITH.
THESE TWO EFFECT SIZES, TO YOU
AND LAW OF RESPONSE RATIO.
-- TAU -- THE DOTS OF INDIVIDUAL
SPECK SIZES SO IT SHOWS THE
DISTRIBUTION OF THE EFFECT SIZES
ACROSS THE STUDIES AND ACROSS
AGES.
YOU CAN SEE THAT THE EFFECTS
WERE PRETTY -- THE AVERAGE
EFFECTS WERE PRETTY STEADY
ACROSS-THE-BOARD.
YOU CAN ALSO SEE HOW
HETEROGENOUS THESE DATA ARE,
WHICH SPEAKS TO THE NEED TO VERY
MUCH INDIVIDUALIZE AAC
INTERVENTIONS.
I CAN ALSO TELL YOU, OVERALL, WE
DO NOT FIND VERY MANY
STATISTICALLY SIGNIFICANT
DIFFERENCES WHEN WE WERE LOOKING
OR TRYING TO MAKE COMPARISONS
ACROSS GROUPS.
SO LIKE FOR EXAMPLE, WHEN WE
WERE LOOKING AT WHAT
COMMUNICATION MODE DID THEY USE
PRIOR?
DID THE PARTICIPANTS USE PRIOR
TO INTERVENTION AND WHAT WERE
THE EFFECTS OF THE INTERVENTION?
WE FOUND NO SIGNIFICANT
DIFFERENCES.
WE CAN'T SAY LIKE ONE OF THESE
TYPES OF COMMUNICATION IS GOING
TO HAVE BETTER EFFECTS OVER ALL.
THERE WERE SLIGHTLY, YOU KNOW,
HIGHER OUTCOMES FOR PARTICIPANTS
WHO HAD SOME SYMBOLIC LANGUAGE
GOING IN.
SO IF THEY USED LOW-TECH AAC OR
THE HIGH-TECH AAC OR MANUAL SIGN
LANGUAGE.
IN MOST CASES THEY HAD BETTER
EFFECTS BUT NOT STATISTICALLY
BETTER EFFECTS THAN FOLKS WHO
DIDN'T USE SYMBOLIC LANGUAGE AT
THE OUTSET.
SO, AS FAR AS IMPROVING
REPORTING RELATED TO PARTICIPANT
TRAITS, OBVIOUSLY WE NEED, WE
DESPERATELY NEED MORE DIVERSE
PARTICIPANTS TO BE IN THESE
STUDIES AND WE NEED CULTURALLY
AND LINGUISTIC RESPONSIVE
APPROACHES.
THIS IS -- WE VERY MUCH ARE NOT
REFLECTING THE POPULATION OF THE
U.S. OR GLOBALLY FOR THAT
MATTER.
WE ALSO NEED BETTER DESCRIPTIONS
OF THE PARTICIPANTS AND THEIR
PRIOR SKILLS.
WE DON'T REALLY HAVE A GOOD --
AND OF THEIR ASSESSMENTS.
THERE IS NOT VERY MUCH
CONSISTENCY ACROSS ASSESSMENTS,
ACROSS THE STUDIES.
WHICH MAKES IT VERY HARD, AGAIN
TO, SYNTHESIZE THIS LITERATURE.
ALSO AS PEOPLE WERE TALKING
ABOUT YESTERDAY, A LOT, WHICH I
REALLY APPRECIATE, WE NEED MORE
RESEARCH THAT INVOLVES
SHAREHOLDERS AND DECISION-MAKING
AT ALL STAGES AND I'M THRILLED
TO HEAR A LITTLE BIT YESTERDAY
ABOUT SOME FOLKS WHO ARE
STARTING TO DEVELOP GUIDANCE FOR
RESEARCHES ON HOW TO DO THIS.
I FEEL LIKE I'M AT A LOSS AND IT
WOULD BE HELPFUL TO HAVE
ORGANIZATIONS TO HELP IDENTIFY
AUTISTIC RESEARCHERS OR
COLLABORATORS.
SO NOW I'M GOING TO TALK ABOUT
UNDER WHAT INSTRUCTIONAL
PRACTICES AND CONTEXT?
SO INSTRUCTIONAL SET ACCIDENT,
WHEN WE LOOKED AT WHERE THESE
STUDIES WERE IMPLEMENTED, WE
FOUND THAT MOSTLY THEY WERE
IMPLEMENTED IN CLASSROOMS AND
CLINICS.
HOMES WERE THE LEAST-COMMON
SETTING.
BUT, THERE WEREN'T STATISTICALLY
SIGNIFICANT DIFFERENCES IN
OUTCOMES COMPARING ACROSS
SETTINGS, WHICH TO ME IS VERY
HOPEFUL BECAUSE THAT MEANS WE
SHOULD AND CAN MOVE MORE TOWARDS
MORE NATURAL SETTINGS AS WELL AS
MULTIPLE SETTINGS TO IMPROVE
GENERALIZATION.
SORRY I'M HAVING TO GO SO FAST.
TIME FLIES VERY QUICKLY.
WE ALSO FOUND THAT STUDIES USED
A RANGE OF TEACHING STIMULI AND
INSTRUCTIONAL STRATEGIES BUT
THEY WEREN'T A WHOLE LOT OF
STATISTICALLY SIGNIFICANT
DIFFERENCES, WITH A COUPLE OF
EXCEPTIONS.
MODELING ACT YIELD FOR TAU,
MODELING ACTUALLY WHEN IT WAS
USED, THEY WERE LOWER EFFECTS
THAN WHEN IT WASN'T.
NOT SURE EXACTLY WHY THIS IS AND
IT MAY NOT WORK OUT IF -- WE MAY
NOT SEE THE SAME EFFECTS IF WE
HAD BROKEN IT DOWN MORE BY
POPULATIONS.
PHYSICAL PROMPTS WHEN THAT WERE
USED HAD AYER EFFECTS.
WHICH MAKES SENSE FROM THE
STANDPOINT OF A LOT OF AAC AND
UNAIDED AAC PARTICIPANTS WOULD
BENEFIT FROM PHYSICAL PROMPTING
IN EARLY STAGES.
SO WHAT INFORMATION TWO WE NEED?
MORE IMPLEMENTATION AND LESS
RIGID AND MORE NATURAL CONTEXT
WITH COMMUNICATION PARTNERS, THE
NATURAL PARTNERS IN THE
SETTINGS.
IN NATURAL SETTINGS AND NOT
PULLED ASIDE INTO A SPECIAL
CLINIC ROOM.
AND WITH NATURAL MATERIALS
PRESENT IN THEIR ENVIRONMENT.
AND FINALLY FOR WHAT TARGETED
OUTCOMES, I'M GOING SKIP AHEAD
TO WHAT THE GAPS ARE AND WHAT WE
NEED TO CONCENTRATE ON.
SO, LONG TERM, WE IN SINGLE
CASE, WE TEND TO HAVE
MAINTENANCE DATA WE TEND TO TAKE
AT A FEW WEEKS AFTER THE END OF
THE INTERVENTION BUT THAT'S NOT
REALLY TELLING US VERY MUCH
ABOUT LONG TERM.
WE NEED MORE RESEARCH ON
MULTIMODAL COMMUNICATION USING
ALL DIFFERENT KINDS OF
COMMUNICATION.
THE OBJECT IS NOT TO GET
SOMEBODY TO USE THIS AAC DEVICE.
IT'S TO HELP THEM COMMUNICATE
FLUENTLY AND EASILY AND GET
THEIR NEEDS ACROSS.
AND THEN OF COURSE MATCHING
COMMUNICATION MODES TO
PARTICIPANTS.
AND I THINK I'M ABOUT OUT OF
TIME.
BUT ONE WORD FOR REPLICATION AND
FOR OPEN SCIENCE.
I WELCOME COLLABORATIONS.
THERE IS AGAIN THE LINK TO MY
HANDOUTS IF YOU WANT TO GET TO
WHAT I WAS ABLE -- WASN'T ABLE
TO GET TO.
>>CONNIE KASARI: WITHIN TIME,
THANK YOU, BIRDIE THAT WAS
GREAT.
SO WE HAVE A VERY DIVERSE SET OF
TALKS THIS MORNING.
SO NOW WE'LL HAVE SOME
COMMENTARY AND WE ARE FORTUNATE
TO HAVE STEPHEN CAMARATA HERE
WHO WILL START US OFF.
>>STEPHEN CAMARATA: THANK YOU
VERY MUCH.
ALL RIGHT, LET'S SEE.
CAN EVERYBODY SEE MY SCREEN?
THAT SLIDE IS VERY APPROPRIATE.
SO, WHAT AN AMAZINGLY TALENTED
GROUP OF RESEARCHERS.
THEY WENT SO THROUGH QUICKLY.
IT'S KIND OF UNDERESTIMATE JUST
THE TALENT AND ALL THE EXPERTISE
THAT WENT INTO THAT.
A COUPLE OF HIGHLIGHTS.
I'M NOT THE STAR OF THE SHOW
HERE.
I JUST WANT TO MAKE SOME HIGH
POINTS.
SO I'M VUUMZ PAYING ME WHICH I
LOVE.
NIH AND IE.
AND DEPARTMENT OF EDUCATION
SUPPORT MY RESEARCH.
I ALSO GET A SMALL AMOUNT OF
ROYALTIES FROM AN ARTICULATION
TESTS WE DEVELOPED FROM DICK
WOOD COCK AND I HAVE SOME BOOKS
AND GET?
ROYALTIES FROM THOSE.
I WANT TO ECHO ONE THING.
IT'S VERY FOUNDATIONAL AND IT
HAS COME UP AGAIN AND AGAIN.
WHO ARE WE TALKING ABOUT?
WE PUBLISHED A DESCRIPTION OF
NON VERBAL AND MINIMALLY VERBAL
CHILDREN IN A PAPER LAST YEAR,
TWO YEARS AGO AND WHAT WE FOUND
WAS THAT THERE IS A LOT OF
VARIATION IN WHO IS INCLUDED IN
THESE STUDIES.
I THINK THE FIRST THING IS, IF
WE ARE GOING TO GET, MAKE
PROGRESS IN RESEARCH, WE HAVE
GOT TO HAVE GOOD DETAILED
PHENOTYPING.
WE HEARD THAT FROM THE PREVIOUS
PRESENTATION WHICH WAS
OUTSTANDING.
I WISH I COULD GO THROUGH THE
DATA SHE PRESENTED IN DETAIL.
THAT WAS PHENOMENAL IT'S REALLY
CRUCIAL AND I THINK WE WERE
SHOWED THAT DESIGN IS REALLY
IMPORTANT IN THAT THE ONLY WAY
WE WILL MAKE PROGRESS IN THIS
DISCOVERY SPACE IS IF WE USE THE
RIGHT DESIGN AND THE RIGHT
TOOLS.
SO, CLEARLY ONE OF THE WONDERFUL
THINGS THAT I LOVED ABOUT
DR. LARRY SCAHILL'S
PRESENTATION, WE HAVE ENOUGH
STUDIES TO SAY THAT THIS IS THE
WAY TO GO, COMBINATION.
I HAVE BEEN SAYING THAT BUT NOW
IT'S GREAT BECAUSE NOW I HAVE
EVIDENCE AND THE STUDIES THAT
CONTRIBUTE TO THAT.
DR. DANIEL ALMIRALL POINTS OUT
WHEN YOU HAVE A INDIVIDUAL, THEY
WILL HAVE A UNIQUE SET OF NEEDS.
THESE KIND OF DESIGNS WHERE YOU
CAN ADAPT THE TREATMENT IN
REALTIME IF YOU WILL, AS YOU
LOOK AT RESPONSE TO TREATMENT,
WILL BE VERY HELPFUL AND THAT'S
A VERY, VERY IMPORTANT CONCEPT
TO TAKE WITH US.
THE DIFFERENT TOOLS HAVE
DIFFERENT STRENGTHS AND
WEAKNESSES.
WE SHOULDN'T BE ARGUING ABOUT X
DESIGN OR Y DESIGN IS BETTER
OVERALL.
WHAT IT SHOULD BE IS, THESE ARE
TOOLS AND WHAT WE SAW IN THIS
PRESENTATION IS 3 VERY DIFFERENT
IDEAS THAT ARE ALL FOLK YOU
USING TOGETHER ON A PARTICULAR
QUESTION.
-- FOCUSING -- THAT IS HELPING
PEOPLE WHO ARE NON VERBAL AND
MINIMALLY VERBAL PEOPLE WITH
AUTISM TO COMMUNICATE.
ALL THESE THINGS NEED TO BE IN
OUR TOOLKIT.
I DO WANT TO HIGHLIGHT SOMETHING
THAT CAME UP YESTERDAY AND I
ADDED THIS SLIDE AS PEOPLE WERE
TALKING.
IN OUR REVIEW, WE FOUND THAT
PEOPLE THAT ARE LIKE USING
AFRAID SPEECH OR LARGER
COMMUNICATIONS ARE INCLUDED
SOMETIMES UNDER THE DESCRIPTIONS
OF MINIMALLY VERBAL.
SO WE REALLY NEED TO BE FOCUSING
ON THE MINIMALLY VERBAL PEOPLE
IN A BIG WAY.
NOT TO SHORT CHANGE THE OTHER
COMMUNICATION NEEDS OF PEOPLE ON
THE SPECTRUM.
WE WANT TO SERVE EVERYBODY.
BUT IT'S REALLY CRUCIAL THAT WE
FOCUS ON MINIMALLY VERBAL PEOPLE
AS WE GO FORWARD BECAUSE THESE
ARE THE PEOPLE THAT HAVE THE
MOST -- HIGHSEST COMMUNICATION
NEEDS, SUPPORT NEEDS AND SO ON.
WE KNOW FROM BEHAVIOR ANALYSIS
THAT LARRY SHOWED FOR CROSS
POLLENNIZATION, COMMUNICATION IS
SUCH A CENTRAL PART AND IF THERE
IS ONE THING THAT PARENTS WOULD
SAY TO ME, IF I COULD GET MY
AUTISTIC CHILD TO COMMUNICATE,
THAT WOULD BE THE ONE THING I
COULD DO.
SO WE REALLY WANT TO FOCUS ON
THIS.
THESE ARE NOT PEOPLE USING
AFRAID SPEECH.
AND IT WON'T BE APPLICABLE AND
THAT'S ANOTHER IMPORTANT THING.
AS WE LEARNED YESTERDAY AND WE
HEARD FROM A LOT OF OUR
STAKEHOLDERS, IT'S IMPORTANT WE
INCLUDE QUALITATIVE DESIGNS.
WE NEED TO HAVE AS PART OF THE
FEED BACK LOOP WE DO AS
RESEARCHERS.
QUALITATIVE DESIGNS ARE THE MOST
VULNERABLE TO BIAS SO WE HAVE TO
BE CAREFUL.
THE ON THE OTHER HAND THEY ARE
EXCELLENT.
AND I CAN POINT TO YOU MANY,
MANY QUALITATIVE DESIGNS THAT
LAID THE GROUNDWORK FOR FUTURE
STUDIES THAT REALLY VALIDATED
THE ORIGINAL RUBRICS.
SO WE DEFINITELY NEED TO BE
THOUGHTFUL AND MOVAL ABOUT
INCLUDING THESE AND THAT'S ALL
PART OF THE STAKEHOLDER
DISCUSSION AS WELL.
IT'S IMPORTANT WE THINK ABOUT,
AND YOUR POINT IN BROADER
OUTCOMES.
I THOUGHT IT WAS REALLY
INTERESTING TO HEAR THAT OKAY,
IF WE JUST PROVIDE A DRUG OR
PROVIDE OXYTOCIN OR WHATEVER IT
IS, THAT DOESN'T NECESSARILY
CHANGE THE BEHAVIOR.
ONE OF MY STUDENTS CALLED AN
ANCIENT NATURAL 1991, JOHN AND I
PUBLISHED A STUDY SHOWING THAT
IF YOU TEACH AUGMENTIVE
COMMUNICATION, JUST USE THE
DEVICE, IT DOESN'T GENERALIZE.
AND THEN IF YOU WANT TO USE --
PEOPLE USE IN A SOCIAL WAY, YOU
HAVE TO TARGET SOCIALIZATION.
SO I'M REALLY HAPPY TO HEAR THAT
THAT'S NOT ONLY TRUE FOR
AUGMENTIVE BUT FOR EVERYTHING.
SO WE DO SOMETIMES HAVE TO BUILD
ATTITUDE FOR SPEECH PRODUCTION
LIKE ARTICULATION OR HOW TO
ACTIVATE AND SCAN A DEVICE.
WE HEARD THAT FROM JANICE
YESTERDAY.
I HEARD THAT SHE WAS THINKING
ABOUT HOW CAN WE REALLY GET THIS
TO GENERALIZE.
SO WE REALLY WANT TO THINK ABOUT
OUR SHORT TERM NEAR POINT AND
HOW THOSE FEED INTO THE BROADER
OUTCOMES.
RECENT PAPER SAID THAT IT'S
REALLY IMPORTANT WE ALIGN OUR
SHORT-TERM GOALS WITH LONG-TERM
GOALS BECAUSE THE OUTCOMES
AREN'T AS GOOD AS WE'D LIKE
BECAUSE PEOPLE ARE GOING
DAY-TO-DAY, MONTH-TO-MONTH,
TRYING TO ALIGN WITH SHORT TERM
THINGS BUT NOT ALIGNING THEM
WITH WIDER GOALS.
THE LAST THING I WANT TO LEAVE
YOU WITH IS, WE HAVE TO REALLY
THINK ABOUT ETHICAL RESEARCH AND
WE HEARD ABOUT THE LACK OF
DIVERSE PERSPECTIVES AND
INCLUSION.
CLEARLY DIFFERENT POPULATIONS,
HOW DO THEY REACT TO DIFFERENT
KINDS OF PEOPLE AND DIFFERENT
KINDS OF INTERVENTION?
WHAT IS THE ROLE OF PARENTS AND
THESE THINGS NEED TO BE STUDIED
AND INCLUDED.
THE OTHER THING THAT REALLY
CAUGHT MY -- REALLY IMPORTANT TO
ME IS THE NARRATIVE FROM OUR
FIRST SPEAKER WHO IS AN AAC USER
AND MENTIONED TRAUMA FROM THE
TREATMENT.
WE PUBLISHED A SERIES OF STUDIES
GOING BACK 25 YEARS SHOWING THAT
DIRECT PROMPTING AND STRONG
PROMPTING OR FORCED PROMPTING
MAY NOT NECESSARILY -- THAT IS
SOMETHING WE NEED TO THINK
ABOUT.
THERE MAY BE TIMES WHEN IT IS
NEEDED BUT THERE ARE TIMES WE
WANTED TO USE THAT JUDICIOUSLY
AND IT'S IMPORTANT TO THINK
ABOUT THAT.
THIS IS THE FIRST SLIDE THAT
CAME UP.
WE ARE ALL ON THE SAME TEAM.
I WORRY THAT RIGHT NOW THERE IS
A LOT OF CONVERSATIONS ABOUT WHO
SPEAKS FOR PEOPLE AND WHAT
STAKEHOLDERS ARE.
WE HAVE TO RESPECT AUTONOMY AND
ACCEPTANCE BUT THERE IS ALSO A
RIGHT TO COMMUNICATION AND WE
HAVE TO HAVE AN ONGOING DIALOGUE
BECAUSE I REALLY WORRY THAT WE
ARE GOING TO BECOME
FRACTIONATED.
HONESTLY, I THINK ALL OF US
HERE, AND THE DEDICATION AND
JUST ALL THE THINGS I HAVE HEARD
FROM EVERYBODY, WE ALL WANT TO
BE RESPECTFUL AND WE ARE ALL
WORKING TOGETHER AND HAVE
DIFFERENT PERSPECTIVES.
WE WANT FEEDBACK TO DO BETTER
BUT I DON'T WANT THIS TO
FRACTIONATE.
I REALLY WORRY ABOUT THAT THAT
THE POINT.
FINALLY, I WANT TO THROW OUT A
COUPLE OF DESIGN THINGS FOR THE
FUTURE.
IF YOU'RE A CANCER PATIENT HERE
AT VANDERBILT, YOU'RE PUT INTO A
NATIONAL DATABASE.
AND I THINK THE ONLY WAY FORWARD
NOW WE HAVE BIG DATA -- AND I'M
SORRY, I MEAN I'M NOT BENEFITING
AT ALL BUT I REALLY THINK THAT
THIS HAS TO BE ACROSS INSTITUTE
INITIATIVE WHERE ALL MINIMALLY
VERBAL PEOPLE ARE ENROLLED IN A
NATIONAL DATABASE AND WE ARE
COLLECTING INFORMATION AND
MOVING FORWARD.
I RESONATED TO JOHN ROBINSON'S
TECHNOLOGY.
I LOVED TO SEE COUPING WITH
BRAIN WAVES.
THERE IS A TREATMENT PRAGMATIC
CLINICAL TRIALS WHERE THEY
CAPTURE PARTIAL DATA.
IT'S NOT STRONG EVIDENCE BASE
BUT IT IS DATA NONETHELESS AND
IF YOU ANALYZE IT PROPERLY.
YOU'RE COLLECTING DATA FROM ALL
THE PATIENTS IN THE CLINIC AND
YOU'RE HARNESSING THAT AND USING
BIG DATA.
AND THEN I THINK IT'S REALLY
IMPORTANT.
ALL OF US ARE WORKING TOGETHER
BUT NOT REALLY IN A PLANNED WAY.
AND I JUST SEE THIS NEED.
I MEAN, CLEARLY HELEN AND CONNIE
HAVE BEEN AT THE FOREFRONT OF
THIS.
BUT WE NEED TO HAVE STRATEGIC
PLANNING.
I'M NOT A TOP-DOWN KIND OF
PERSON IN ANY WAY.
BUT I REALLY THINK WE NEED TO
ALIGN OUR GOALS AND HAVE
PRIORITIES AND IN ORDER FOR US
TO MAKE PROGRESS, I THINK WE
HAVE TO BE MORE MINDFUL AND
SYSTEMATIC ABOUT IT.
THANK YOU VERY MUCH FOR YOUR
ATTENTION.
>>CONNIE KASARI: GRATED.
UNDER TIME AS WELL AND WHAT A
GREAT COMMENT.
WE ARE ALL ON THE SAME TEAM.
>>STEPHEN CAMARATA: WE DON'T
WANT TO FORGET IT.
I HAVE SEEN FIELDS FRACTIONATE
AND IT STOPS PROGRESS.
AND WE HAVE TO.
WE ALL CARE SO DEEPLY HERE.
IT'S CLEAR.
>>CONNIE KASARI: ABSOLUTELY.
THANK YOU.
NOW WE ARE GOING TO HAVE
COMMENTARY BY ALEUTSULOUS, A
PARENT AND A SOCIAL SCIENTIST --
A ELUDES ELUDES.
WELCOME.
WE ARE LOOKING FORWARD TO YOUR
COMMENTS -- AMY LUTZ.
DO YOU WANT TO STOP SHARING
SCREEN, STEPHEN.
>>I'M TRYING TO FIND MY ZOOM.
IT'S IN A CORNER AS USUAL.
I'M GOING TO BAILOUT AND THEN
COME BACK.
>>JUDITH COOPER: CAN I ASK THAT
DANIELLE AND BIRDIE STOP SHARING
UNTIL WE GET TO THE DISCUSSION
PERIOD.
THANKS.
HE LEFT AND LEFT HIS SLIDES UP.
THANK YOU.
>>I CLOSED IT.
>>GOT IT.
HI, AMY.
>>AMY LUTZ: THANK YOU FOR
INVITING ME TO PARTICIPATE.
I HEARD JOHN MENTION MEETING ME
AND MY 24-YEAR-OLDY AUTISTIC
SON, JONAH.
AND I DON'T KNOW IF JOHN IS HERE
TODAY BUT I JUST WAS VERY
TOUCHED THAT MEETING THAT SO
IMPACTFUL TO HIM.
IT WAS VERY IMPACTFUL TO US.
AND I THINK HIS CONCLUSION THAT
JUST BECAUSE JOHN SHARES A
DIAGNOSIS WITH MY SON JONAH,
DOESN'T MEAN THAT HE HAS ANY
PARTICULAR INSIGHT INTO WHAT
JONAH NEEDS, IS REALLY APT AND
NEEDS TO BE FOREFRONT OF THESE
CONVERSATIONS.
SO I DON'T HAVE ANY SLIDES AND
I'M SORRY, I MISSED MOST OF THE
TALK.
I HAD TO KIND OF LEAVE VERY
SHORTLY AFTER JOHN'S TALK
YESTERDAY BECAUSE I TEACH.
AND PEN SCHEDULED ONE OF MY
CLASSES DURING THIS MEETING SO I
COULDN'T ABANDON MY STUDENTS.
SO I APOLOGIZE IF WHAT I SAY IS
NOT CONNECTED TO WHAT HAPPENED
YESTERDAY OR PERHAPS ONE OF
THESE ISSUES WAS ADDRESSED
YESTERDAY AND PLEASE CORRECT ME
DURING THE Q&A.
TO ME, THERE IS TWO MAIN ISSUES
FOR, THAT IS IMPORTANT TO ME AS
THE MOTHER OF A SERIOUSLY
AUTISTIC ADULT NOW BUT ALSO I'M
VICE PRESIDENT OF NATIONAL
COUNCIL ON SEVERE AUTISM.
SO WE WORK WITH SO MANY FAMILIES
WHO HAVE SERIOUSLY AUTISTIC
CHILDREN AT ALL AGES FROM PRETTY
YOUNG BUT NOT SUPER YOUNG
BECAUSE USUALLY CHILDREN DON'T
REALLY OR PARENTS DON'T CONSIDER
THEIR CHILDREN TO BE QUITE
SEVERE UNTIL THEY ARE A LITTLE
BIT OLDER AND THEIR TRAJECTORIES
BECOME MORE FIXED.
BUT FROM WHAT WE ARE HEARING
FROM OUR FAMILIES AND ALSO --
THIS IS JUST ALSO MY PERFORM
PERSPECTIVE AND MY REACTION TO
LISTENING TO THESE CONVERSATIONS
ABOUT MINIMALLY VERBAL, IS I'M
GOING TO STEAL A PHRASE ABOUT
THE NEED FOR GOOD PHENOTYPING
AND ABOUT TALKING ABOUT
DIFFERENT POPULATIONS IN
SPECIFIC WAYS.
SO I'M HEARING A LOT ABOUT
LANGUAGE DEFICITS, MINIMALLY
VERBAL INDIVIDUALS.
I HAVEN'T HEARD ANYONE REALLY
SAY ANYTHING ABOUT THE
SIGNIFICANT COGNITIVE
IMPAIRMENTS THAT ARE OFTEN
ACCOMPANYING OR PRESENT IN
INDIVIDUALS THAT HAVE AUTISM AND
MINIMALLY VERBAL AND THAT
COMPLICATES THE TYPE OF LANGUAGE
THAT WE WANT TO HOPE FOR THESE
AND HELP THESE INDIVIDUALS
ATTAIN.
SO, I MEAN MY SON HAS A LOT OF
DIFFERENT LANGUAGE MODALITIES.
HE HAS A SIGNIFICANT
INTELLECTUAL DISABILITY BUT HE
ALSO HAS SOME WORDS AND HE WAS
HYPERLEXIC SO HE CAN SPELL AND
HE CAN TYPE.
BUT IN A VERY FUNDAMENTAL WAY.
AND THE KIND OF THINGS HE USES
HIS LANGUAGE FOR, FOR ASKING FOR
THINGS, PRIMARILY.
I MEAN THAT WAS HUGELY IMPORTANT
FOR HIM TO LEARN PHRASES THAT --
LIKE I NEED HELP.
OR FIX THIS.
AND I DON'T THINK HE NECESSARILY
UNDERSTANDS WHAT EVERY WORD
MEANS IN THESE PHRASES BUT HE
KNOWS BY SAYING THESE THINGS, HE
WILL GET ME TO FIX HIS iPAD OR
HELP HIM PUT HIS SHOE ON OR
SOMETHING.
SO THE TYPE OF LANGUAGE -- I
THINK WE NEED TO DISTINGUISH
BETWEEN PEOPLE OF SIGNIFICANT
COGNITIVE IMPAIRMENT AND THOSE
WHO DON'T.
IT'S A VERY DIFFERENT LANGUAGE
LANDSCAPE FOR THOSE.
FOR MY SON, THE PROBLEM IS NOT
THAT HE DOESN'T HAVE THE ABILITY
TO SPEAK OR WRITE OR COMMUNICATE
ADVANCED CONCEPTS.
HE JUST DOESN'T HAVE ADVANCED
CONCEPTS BECAUSE OF HIS
SIGNIFICANT COGNITIVE
IMPAIRMENT.
OUR LANGUAGE GOALS ARE VERY
DIFFERENT.
JUST REALLY NEED TO EMPHASIZE
THAT YES, WE THE FAMILIES OF
MINIMALLY VERBAL INDIVIDUALS AND
MINIMALLY VERBAL INDIVIDUALS
THEMSELVES, WE NEED NEW
INTERVENTIONS.
I WAS SO EXCITED -- I HAVE TO
SAY THAT DR. A AUTUMN AUTUMN,
YOUR EXCITEMENT IS CONTAGIOUS --
DANIEL ALMIRALL, ABOUT THE
FUTURE OF ALL THESE DIFFERENT
MODALITIES AND COMBINING
TREATMENTS AND SEEING
SIGNIFICANT IMPACTS.
LIKE I WAS LIKE I WISH THEY HAD
THIS WHEN MY SON WAS YOUNGER.
BUT I THINK AS MUCH AS WE NEED
INTERVENTIONS, WE NEED
EVIDENCE-BASED INTERVENTIONS.
AND I LIKE DR. DANIEL ALMIRALL'S
EMPHASIS ON USING RANDOMIZED
CLINICAL TRIALS, CONTROLLED
EXPERIMENTS FOR EVALUATING
TREATMENTS.
AND I THINK THIS ABSOLUTELY IS
ESSENTIAL.
MY SON, HE HAS A PRETTY FRAGILE
AGENCY.
HE HAS LIMITED CONTROL OVER HIS
ENVIRONMENT.
AND IT IS ABSOLUTELY ESSENTIAL
THAT WE MAKE SURE THAT WHAT HE
COMMUNICATES REALLY REFLECTS HIS
AGENCY.
WE DON'T WANT TO RISK HIJACKING
THE AGENCY OF PEOPLE WHO ALREADY
HAVE SO LITTLE IMPACT ON THEIR
ENVIRONMENT BY GIVING THEM
INTERVENTIONS THAT DON'T
ACCURATELY REFLECT THEIR VOICE
AND THEIR AUTONOMY.
SO, I DO WANT TO CORRECT
SOMETHING THAT DR. STEPHEN
CAMARATA SAID, WHICH IS I AGREE
THERE IS A RIGHT TO COMMUNICATE
BUT I THINK THAT THAT NEEDS TO
BE MODIFIED TO A RIGHT TO
INDEPENDENT COMMUNICATION.
WHATEVER THAT LOOKS LIKE.
IF IT MEANS -- WHEN JONAH WAS A
LITTLE KID, HE LEARNED ONE SIGN,
MORE.
THAT WAS ALL HE HAD.
BUT HE USED IT IN A SURPRISINGLY
LARGE NUMBER OF CONTEXT.
HE USED IT TO ASK FOR THINGS HE
HADN'T BEEN GIVEN ANY OF YET.
THAT'S WHAT HE USED.
NOW HE HAS SOME LANGUAGE.
HE ALSO CAN SPELL SOME THINGS.
BUT THAT'S INDEPENDENT LANGUAGE.
AND I THINK THAT WE REALLY
HAVE -- THAT'S A LINE WE HAVE
TO, A BRIGHT LINE IN THE SAND
THAT WE NEED TO HAVE CONTROLLED
STUDIES TO DEMONSTRATE
INDEPENDENT LANGUAGE.
THANK YOU.
Y.
>>CONNIE KASARI: THANK YOU,
IMPORTANT COMMENTS.
NOW WE ARE NOT GOING TO HAVE
OPEN DISCUSSION AS JUDITH SAID,
WE ARE GOING TO WAIT UNTIL THE
END AND MOVE TO MEANINGFUL
OUTCOME MEASURES AND HELEN, IT'S
YOURS.
>>HELEN TAGER-FLUSBERG: THANK
YOU CONNIE AND THANK YOU TO
EVERYONE IN THE PREVIOUS
SESSION.
SO IMPORTANT TO THINK ABOUT
RESEARCH DESIGN AND WHAT OUR
METHODS ARE.
BUT THE TOPIC THAT HAS COME UP
YESTERDAY AND THE TOPIC THAT WAS
ALLUDED TO IN THE PREVIOUS
SESSION IS THE ISSUE OF
MEASURING MEANINGFUL OUTCOMES.
AND I DON'T THINK THIS TOPIC
WILL AGREE ON COMPLETELY THIS
AFTERNOON.
BUT I THINK IT'S ABSOLUTELY
CRUCIAL AND OUR FIRST SPEAKER
THIS AFTERNOON, CATHY LORD WILL
TALK ABOUT RESEARCH PERSPECTIVES
ON DEVELOPING MEANINGFUL OUTCOME
MEASURES.
>>CATHY LORD: I'M TRYING TO
SHARE MY SCREEN.
THERE WE GO.
I ALSO WANT TO JUST THANK
EVERYBODY FOR INCLUDING ME IN
THIS.
AND I'M SO IMPRESSED THAT PEOPLE
HAVE WORKED TOGETHER FROM A
VARIETY OF DIFFERENT
PERSPECTIVES.
I'M GOING TO TRY TO GIVE
EXAMPLES FROM SOME OF THE WORK I
HAVE BEEN INVOLVED IN OR
PERIPHERALLY INVOLVED IN, AND
CONNIE, YOU'LL SEE SOME OF THE
WORK I JUST VIEWED FROM ACROSS
THE HALLWAY.
I DO HAVE SOME CONFLICTS OF
INTEREST BUT I'M NOT TRYING TO
SELL YOU ANYTHING AND TODAY
NOTHING I TALK ABOUT IS FOR
SALE.
SO HOPEFULLY THAT WILL HELP.
I'M REALLY TRYING TO MAKE TWO
POINTS HERE TODAY.
AND I HAD A THIRD POINT WHICH IS
THE INVOLVEMENT OF PARTICIPANTS
AND STAKEHOLDERS BUT I THINK
OTHER PEOPLE HAVE TALKED ABOUT
THAT A LOT.
SO THE FIRST ONE IS, WE NEED TO
MAKE OBSERVATIONS.
WE NEED TO SEE WHAT IS
HAPPENING.
AND I KNOW THAT THIS IS HARD FOR
SOME STAKEHOLDERS.
I DEFINITELY HAD FEEDBACK THAT I
DON'T WANT TO DOD THIS AND I
DON'T WANT TO BE WATCHED.
I THINK WE HAVE TO FIGURE OUT
HOW TO DO THIS WITH RESPECT AND
COMFORT.
BUT I DO THINK WE NEED TO SEE
WHAT IS HAPPENING WHEN PEOPLE
COMMUNICATE.
AND WHAT WORKS.
I THINK REALISTICALLY, WE ALSO
HAVE TO FIGURE OUT WHAT IS AT
LEAST IN TERMS OF THE CLINICAL
ESTABLISHMENT TO, DO THIS OVER
SHORT TIMES THAT GIVE US
RELIABLE INFORMATION.
AND BECAUSE WE CAN'T JUST WATCH
PEOPLE FOR HOURS AND HOURS AND
HOURS IF WE HAVE TO BILL THEM,
WHICH IS THE REALITY OF AMERICAN
MEDICINE.
I THINK WE HAVE TO LINK THESE
FINDINGS TO MEANINGFUL MEASURES
OF CHANGE THAT GO BACK TO LIKE
SEVERAL PEOPLE HAVE REFERRED TO,
I THINK STEPHEN, ABOUT THE IDEA
OF WHAT ARE OUR REAL GOALS?
AND WE HAVE TO HAVE MEASUREMENTS
THAT WE CAN DO ACROSS CONTEXT
AND PARTNERS.
BECAUSE COMMUNICATION IS TIED TO
CONTEXT T DOESN'T OCCUR IN THE
SKY.
IT OCCURS BETWEEN PEOPLE AND
ABOUT THINGS.
AND THOSE THINGS ARE GOING TO BE
DIFFERENT.
AND IDEALLY IF WE COULD HAVE
MEASUREMENTS THAT WERE CONSTANT
ACROSS STUDIES, NOT THAT THEY
ARE THE ONLY THING WE DO BY ANY
MEANS.
IT WOULD HELP US MAKE THE
HETEROGENEITY THAT IS OBVIOUS
AND FOR EXAMPLE DANNY TALKED
ABOUT MORE COMPREHENSIBLE.
WE NEED TO RECOGNIZE WE ARE
TALKING ABOUT DEVELOPMENT HERE.
I AM SO CURIOUS ABOUT HOW DO
PEOPLE WHO MOVE FROM HAVING
MINIMAL SPOKEN LANGUAGE TO BEING
ABLE TO COMMUNICATE MORE
FLUENTLY IN DIFFERENT FORMS?
HOW DOES THAT HAPPEN?
AND WE NEED TO LEARN MORE ABOUT
THAT PROCESS, NOT JUST YES OR
NO.
WE ALSO NEED TO THINK ABOUT NOT
JUST ORAL SPEECH BUT USE OF
DEVICES AND ALSO THINGS LIKE
GESTURES AND VOCALIZATIONS.
SO I'M JUST GOING TO USE
EXAMPLES.
THIS IS CONNIE'S.
SO THIS IS THE DATA ABOUT THE
SPEECH, EFFECT OF SPEECH
GENERATING DEVICES.
YOU'LL SEE THE LINE HERE, THE
ONE THAT GOES WAY UP.
THOSE ARE KIDS IN HER STUDY.
AND THE FACT THAT THEY USE MORE
SPONTANEOUS UTTERANCES THAN KIDS
WHO DIDN'T HAVE SPEECH
GENERATION.
THIS IS THE SAME STUDY THAT
DANNY MENTIONED.
BUT I THINK WHAT IS REALLY
IMPORTANT HERE IS THAT WHEN MY
POSTDOC AND CONNIE LOOKED
CAREFULLY AT THESE DATE ADD.
OF THE LANGUAGE, INCLUDING THE
SPEECH GENERATING DEVICE, THAT
THE KIDS USED DURING THIS, ONLY
10% OF IT WAS ACTUALLY USING THE
DEVICE.
SO WHAT WAS HAPPENING WAS THAT
THE KIDS WHO WERE IN THE
CONDITION WHO HAD ACCESS TO
SPEECH GENERATING DEVICE, WERE
TALKING MORE.
NOW THAT IS NOT WHAT I WOULD
HAVE EXPECTED AT ALL.
AND MY POINT IS NOT THAT THIS
ALWAYS HAPPENS.
BUT THAT WE NEED TO OBSERVE.
WE NEED TO THINK ABOUT WHAT WAS
HAPPENING.
AND IT TURNED OUT THAT KIDS WHO
HAD BETTER ATTENTION WERE MORE
RESPONSIVE TO THE SPEECH
GENERATING DEVICE.
AND TALKED MORE.
AND I WOULD HAVE PREDICTED THAT
THE SPEECH GENERATING DEVICE
WOULD HAVE IMPROVED JOIN
ATTENTION.
BUT THAT IS NOT WHAT HAPPENED
HERE.
SO MY POINT IS, WE NEED TO STOP
AND LOOK AT WHAT IS GOING ON.
SO I'M GOING TO GIVE YOU ONE
EXAMPLE BUT THIS IS REALLY JUST
AN EXAMPLE.
WE HAVE BEEN DEVELOPING
SOMETHING CALLED THE BOSCC, A
STANDARD WAY OF MEASURING SOCIAL
COMMUNICATION.
IT INVOLVES 12-16 MINUTES OF
VIDEOTAPED PLAY FOR YOUNGER KIDS
AND THEN THERE ARE MATERIALS,
BASICALLY INCLUDING BAR GAMES
FOR ADOLESCENTS AND ADULTS.
ANYONE CAN GIVE THIS.
THE MORE NAIVE THE PLAY PARTNER,
THE BETTER.
THIS PERSON CAN BE BLIND TO
TREATMENT STATUS, WHICH IS SO
IMPORTANT BECAUSE THAT, AS
BIRDIE SAID, THAT IS NOT
NECESSARILY A PART OF WHAT
PEOPLE OFTEN DO.
AND IT CAN BE CODED BY SOMEBODY
ELSE.
IT'S VIDEOTAPED.
WHO DOESN'T KNOW IF THIS IS
BEFORE OR AFTER, IF THE KID IS
IN A CONDITION, WHAT THE GOALS
OF THE STUDY ARE.
NOW WE TOOK AIM DATA AGAIN,
THANKS TO CONNIE.
SO OF AN INTERVENTION THAT WE
WERE PART OF.
AND PEOPLE WERE INTERACTING WITH
THEIR THERAPISTS AND THEY WERE
ALSO DOING A DIFFERENT
INTERACTION WITH THEIR PARENTS.
AND WE WERE INTERESTED IN
INITIALLY WHEN WE TRIED USING
THE DATA FROM THE PARENT DATA,
NOBODY CHANGED.
BUT IN FACT, THE CAREGIVERS, AND
THIS IS RELATED TO DANNY --
THEIR 6-WEEK RESPONSES WERE THAT
MANY PEOPLE HAD CHANGED.
NOT THE CAREGIVERS, THE
THERAPISTS.
WHAT WE WERE ABLE TO DO IS USE
THESE OBSERVATIONAL CODES.
AND ON THE LEFT TO CODE WHETHER
THE KID CHANGED WITH THE
CAREGIVERS, WHICH THEY DID NOT,
AND WHETHER THEY CHANGED WITH
THE THERAPIST, WHICH THEY DID,
PARTICULARLY IN ONE OF THE K.
SO AGAIN, MY POINT S WE NEED TO
SEE WHAT HAPPENS.
WE ALSO CAN TAKE THESE CODES AND
WE COULD SHOW THAT FOR EXAMPLE,
ON THE LEFT, THE KIDS WERE MORE
RESPONSIVE FROM THE START WITH
THEIR OWN CAREGIVERS.
THAT'S THE ENGAGEMENT.
THEY ALSO SHOWED MORE RRBs
WERE MORE ACTIVE AND MORE LIKELY
TO BE AGGRESSIVE.
SO WE HAVE BEEN TRYING TO USE
THESE MEASURES WORKING WITH
SOPHIE AND A WHOLE SLEW OF OTHER
PEOPLE HERE TO LOOK AT
INTERVENTIONS.
AGAIN, IN MICHIGAN, OUR GROUP
WAS ABLE TO PARTICIPATE IN ESDM
TRIALS.
THESE ARE ALL RANDOMIZED CONTROL
TRIALS.
ESI AND GAS PER.
THESE ARE VERY DIFFERENT
INTERVENTIONS.
AND I NEED TO REALLY POINT OUT
THIS IS JUST A SENSE OF WHEN IT
DOES IT WORK?
WHAT WE FOUND, AGAIN, USING
THESE CODINGS BY SOMEBODY WHO
DIDN'T KNOW IF THE KID WAS
BEFORE OR AFTER, DIDN'T KNOW
WHICH INTERVENTION THEY WERE IN,
IS THAT IN ESDM ON THE RIGHT,
THE KIDS IN INTERVENTION GOT
BETTER MORE THAN THE KIDS WHO
WERE NOT IN THE INTERVENTION.
AND THIS IS REALLY A
GENERALIZATION TRIAL BECAUSE
THIS WAS NOT THE GOAL OF THIS
STUDY.
SO THIS MAKES SOME PEOPLE QUITE
NERVOUS.
IN ESI USING ONLY OUR DATA
BECAUSE AMY COULDN'T EVER GET US
HER DATA, WE SAW THE SAME THING.
SO SYSTEMATICALLY AND UP AT THE
TOP IS, SOCIAL COMMUNICATION,
NEXT REPETITIVE LEADERS AND THE
NEXT IS THE TOTAL.
EVERYBODY CHANGED A LITTLE BIT
BUT THE KIDS IN THE INTERVENTION
CHANGED MORE.
WE DID NOT SEE THIS FOR JASPER
BUT JASPER WAS JUST 12 WEEKS AND
FAR LESS INTENSE.
ONE OF THE THINGS WE WERE ABLE
TO DO WAS CODE THE CAREGIVER'S
BEHAVIOR.
THIS IS AN INSTRUMENT OR CODING
SYSTEM FOR THE SAME VIDEO CALLED
THE MONSY.
IS IT A PARENT CHANGED MORE THAN
THE KIDS DID.
AND THE PARENTS AS YOU CAN SEE
ON THE BOTTOM LEFT IN
INTERVENTIONS, CHANGED MORE THAN
PARENTS NOT INTERVENTIONS.
AND THIS ACTUALLY ACCOUNTED FOR
THE CHANGES OF THE KIDS.
SO, ONE OF THE THINGS WE CAN
TELL, WE CAN LEARN FROM
OBSERVING.
WE ALSO HAVE BEEN TRYING TO GET
AUTOMATIC MEASURES FROM THIS.
AND THIS HAS BEEN BACK TO FRED'S
COMMENT.
HUNDREDS OF THOUSANDS OF DOLLARS
LATER.
ENGINEERS FROM USC AND GEORGIA
TECH.
WE HAVE A FEW MEASURES.
SO FOR EXAMPLE, WITH OLDER KIDS
FROM THESE STUDIES, THE LATENCY
TO RESPOND CHANGED.
A METHOD OF OUGHTMATICALLY
CODING WHETHER THE CHILD IN THE
PARENT ARE LOOKING AT THE SAME
THING.
AND THAT ALSO CHANGES FOR THE
LITTLELER KIDS.
SO WE ARE NOW, AND I THINK THE
WHOLE GROUP OF US, INCLUDING
HELEN AND CONNIE AND SOPHIE AND
OTHERS, ARE TRYING TO FIGURE OUT
IF WE CAN DO THIS BETTER.
I THINK JUST TO COME TO A
SUMMARY, MOST CHANGES ARE
GRADUAL.
THERE IS A FEW EUREKA MOMENTS
BUT MOST CHANGES ARE GRADUAL.
SO WE NEED TO KNOW FOR PEOPLE
WHO ARE NON-SPEAKING PEOPLE WHO
HAVE COME TO COMMUNICATE WITH
DEVICES INDEPENDENTLY, SO BACK
TO AMY'S COMMENT.
WE NEED TO KNOW HOW DID THIS
HAPPEN?
MOST CHANGES IN COMMUNICATION
ARE AFFECTED BY THE ENVIRONMENT.
SO WE NEED TO BE ABLE TO TEST
DIFFERENT PARTNERS AND DIFFERENT
PLACES.
AND THE BEST MEASURE OF CHANGE
WILL DEPEND ON WHAT THE
INTERVENTION IS.
SO THERE ISN'T GOING TO BE ONE
THING THAT WORKS FOR EVERYTHING.
BUT WE DO WANT TO HAVE SOME
STANDARDIZATION.
AND TO REMEMBER THAT WE WANT TO
COME BACK TO OUR GOALS, WHICH
ARE MEANINGFUL CHANGE THAT
ALLOWS PEOPLE TO COMMUNICATE.
SO THIS WORKED LIKE EVERYBODY
ELSE'S IS VERY DEPENDENT ON MY
COLLEAGUES AND EVERYBODY ELSE.
BUT I JUST WANT TO THANK YOU FOR
LISTENING.
>>HELEN TAGER-FLUSBERG: THANK
YOU VERY MUCH, KATHY.
THAT'S A GREAT START TO THIS
SESSION ON OUTCOME MEASURES.
WE'LL TURN NOW TO VANESSA BAL.
VANESSA WILL BE SPEAKING ABOUT
EMOTIONAL HEALTH AND WELL-BEING
AS AN OUTCOME AND INDICATOR OF
INTERVENTION SUCCESS.
AND THANK YOU VANESSA.
YOU'RE UP AND RUNNING WITH YOUR
PRESENTATION AND I'LL HAND THE
FLOOR OVER TO YOU.
>>VANESSA BAL: THANK YOU VERY
MUCH.
IT'S REALLY AN HONOR TO HAVE
BEEN INVITED TODAY.
AND I MY CLIS CLOSURE IS AT THE
BOTTOM BUT THE MOST IMPORTANT IS
THE THAT I'M A CLINICAL
PSYCHOLOGIST.
I'M NOT A LANGUAGE RESEARCHER OR
A LANGUAGE INTERVENTIONIST.
AND SO I THINK MAYBE THAT BIAS
WILL COME THROUGH PRETTY CLEARLY
IN WHAT I'M GOING TO TALK ABOUT
TODAY.
SO, I WANTED TO SORT OF TAKE A
QUICK SECOND TO REFLECT.
THIS IS A PAPER AND CONNIE WAS
PART OF THIS IN OUR PRE
CONFERENCE IN 2017, FOCUSED ON
MEASURING MEANINGFUL OUTCOMES.
THIS WAS A BROAD SCOPE
ACROSS-THE-BOARD NOT SPECIFIC TO
MINIMALLY VERBAL OR NON-SPEAKING
INDIVIDUALS.
WE HAD A DISCUSSION WITH OVER
200 DIFFERENT STEAK AND
SHAREHOLDERS, INCLUDING AUTISTIC
PEOPLE, CLINICIANS AND
RESEARCHERS.
THE THEMES THAT EMERGED ARE
THINGS WE REALLY TOUCHED ON IN
THE LAST COUPLE OF DAYS.
IN PARTICULAR I THINK THIS
HIGHLIGHTINGS THAT WE REALLY
NEED TO BROADEN THE SCOPE OF
WHAT WE ARE MEASURING AS
RESEARCHERS.
AND SO, AS WE ARE TALKING ABOUT
LANGUAGE INTERVENTIONS AND
THINKING ABOUT WHAT WE DEFINE AS
A MEANINGFUL OUTCOME FROM A
LANGUAGE INTERVENTION.
AND I WANT TO TAKE A STEP BACK
AND THINK ABOUT WHY DO WE REALLY
USE LANGUAGE?
AGAIN, I'M NOT A LANGUAGE
RESEARCHER.
I'M A LITTLE SELF CONSCIOUS
ABOUT MY CHOICE OF FUNCTION AND
HOW SOME OF THE AUDIENCE MEMBERS
DEFINE FUNCTIONAL COMMUNICATION.
BUT WHAT I MEAN BY THIS IS THAT
THERE IS A SPECIFIC -- LANGUAGE
IS DESIGNED TO ACCOMPLISH
SOMETHING SPECIFIC.
AND THIS CAN BE SORT OF
SEPARATED FROM THE LARGER
PURPOSE.
SO THERE IS LOTS OF FUNCTIONS
THAT WE TRY TO USE LANGUAGE FOR
BUT MUCH OF IT REALLY COMES DOWN
TO OUR OWN PERSONAL MOTIVATIONS,
WHICH I THINK SORT OF IN A
BIGGER PICTURE WAY MAP ON TO
EMOTIONAL HEALTH OR WELL-BEING,
OR PUT SIMPLY, WHAT MAKES US
HAPPY?
WHAT MAKES US SON TENT?
SO IF WE LOOK AT LANGUAGE
INTERVENTIONS OFTEN WE ARE
TARGETING THOSE FUNCTIONS.
SO AS A RESULT, OUTCOME MEASURES
FOCUS ON WHETHER OR NOT THE
INTERVENTION IS SUCCESSFUL AND
HELPING PEOPLE TO COMMUNICATE
FOR THAT PARTICULAR FUNCTION.
THERE IS A LOT OF EMPHASIS ON
OBJECTIVE NUMERIC OUTCOMES WITH
AN ASSUMPTION THAT MORE IS
BETTER.
THAT MAKES SENSE.
WE NEED THOSE SORTS OF METICS
AND THAT IS REALLY IMPORTANT.
BUT I THINK SOMETIMES WE RUN THE
RISK OF MISSING THAT BIGGER
PICTURE.
SO, WHICH IS WHETHER THE
COMMUNICATION IS SERVING THE
UNDERLYING PURPOSE.
SO THE EXAMPLES THAT GRANT AND
JORDYN GAVE US YESTERDAY,
HIGHLIGHTED HOW TONE OF THE
AUGMENTIVE COMMUNICATION DEVICE
DOESN'T NECESSARILY CAPTURE
THEIR COMMUNICATIVE INTENT.
WHAT IF YOU'RE TRYING TO GET
EMOTIONAL SUPPORT BUT YOUR
METHOD OF COMMUNICATING DOESN'T
CONVEY YOUR PERSONAL EXPERIENCE?
IS THE FUNCTION MEANINGFUL?
SO SOMEONE MADE REFERENCE
YESTERDAY TO MANY INTERVENTIONS
FOCUSING ON REQUESTING AND MORE
TO LIFE THAN COOKIES.
AND WADO WE HAVE IF YOU FOCUSED
ON HELPING SOMEONE TO REQUEST
SOMETHING SPECIFIC, AND THEN
THEY GET OLDER AND THEY CAN GET
THE COOKIES FOR THEMSELVES.
THEY CAN OPEN THAT BOX.
AND SO THEN IS THAT LANGUAGE AND
IS THAT SUPPORTED COMMUNICATION
STILL SERVING THAT FUNCTION?
AND THEN WE HAVE THE EXAMPLES
FROM DEN SPEC FROM AMY ABOUT THE
WAYS IN WHICH YOU CAN -- IT GOES
BEYOND THE NUMBER OF WORDS OR
THE NUMBER OF SIGNS YOU HAVE AND
REALLY DENISE'S SON WAS ABLE TO
FIGURE OUT HOW TO USE BREAD
STICKS AND THE BROAD REPERTOIRE
DIDN'T HAVE THE SPECIFIC WORD ON
THE DEVICE BUT HERE'S ABLE TO
FIGURE OUT HOW TO COMMUNICATE
WHAT IT WAS HE WANTED.
AMY MENTIONED HER SON USING A
SINGLE SIGN ACROSS A VARIETY OF
DIFFERENT FUNCTIONS.
SO MOVING BEYOND HOW MANY DO WE
HAVE, HOW OFTEN DO WE USE, BUT
DO YOU HAVE IT AT THE POINT THAT
YOU REALLY NEED TO COMMUNICATE
SOMETHING?
AND SO, I THINK I WANT TO BE
REALLY CLEAR.
I THINK LANGUAGE INTERVENTIONS
ARE INHERENT LIE SUPPORTING THE
BIGGER PICTURE.
THIS ISN'T LIKE A NOVEL IDEA
BEING ABLE TO EXPRESS OURSELVES
AND OUR NEEDS AND DESIRES, TO BE
ABLE TO CONNECT WITH PEOPLE, TO
BE ABLE TO REFUSE THOSE
CONNECTIONS.
THOSE ARE ALL IMPORTANT FACETS
TO QUALITY OF LIFE.
AND OBVIOUSLY MORE FLUENCY, MORE
WORDS, MORE MODALITIES CAN BE
REALLY VALUABLE TO ENSURE THAT
EVERYONE HAS ACCESS TO THAT.
BUT I THINK IF WE LISTEN TO THE
STAKEHOLDERS IN OUR ZOOM ROOM,
IF WE REALLY BELIEVE THAT THE
PURPOSE OF LANGUAGE IS REALLY TO
PROMOTE SOME FACET OF OUR
WELL-BEING, SHOULDN'T WE BE
MEASURING THAT AS AN EXPLICIT
OUTCOME, AS AN INDICATOR OF
SUCCESS IN OUR INTERVENTIONS
BROADLY BUT INCLUDING OUR
SPECIFIC LANGUAGE INTERVENTIONS?
AND IF WE THINK ABOUT THIS, HOW
DOES THE FOCUS ON EMOTION OR
WELL-BEING ACTUALLY EXPAND OUR
DEFINITIONS OF INTERVENTION
RESPONSE, WHAT WE DEFINE AS
SUCCESSFUL OUTCOME IN
INTERVENTION AND EVEN IN FORM
OUR DECISIONS REGARDING WHEN WE
MIGHT MOVE TO AN ADAPTIVE
DESIGN.
SO THINKING ABOUT, HOW EFFECTIVE
IS THE COMMUNICATION FOR THE
BROADER PURPOSE?
WHAT ABOUT THOSE INDIVIDUALS WHO
TALKED ABOUT THE BARRIERS TO
VARIOUS TYPES OF AAC DEVICES AND
WHAT ABOUT THE FLUENCY OR THE
COMFORT OR EASE WITH WHICH THEY
ARE ABLE TO USE THOSE TO
COMMUNICATE.
SOMETIMES RELATIVELY SIMPLE
NEEDS ARE OF THE UTMOST
IMPORTANCE TO THOSE INDIVIDUALS.
WE HAVEN'T TALKED TOO MUCH ABOUT
THE SATISFACTION OVERALL WITH
THE OUTCOME THEY ARE TRYING TO
ACHIEVE WITH THE INTERVENTION OR
THE MODALITY.
DO THEY WANT TO USE AN AAC
DEVICE?
IS SOMETHING LIKE GHOST YOURS
EASIER FOR THEM?
THERE WAS A LOT OF --
GESTURES -- DISCUSSION YESTERDAY
ABOUT INDUSTRY AND NOTHING MAKES
IT IN INDUSTRY UNLESS CUSTOMERS
ARE SATISFIED.
AND SO I THINK IF WE THINK OF IT
FROM THAT ANGLE, WHAT ARE WE
TRYING TO SERVE FOR THESE
PEOPLE?
SO LOOKING AT THE CLOCK,
EVERYONE IS SO GOOD ABOUT TIME.
I'M NEVER GOOD ABOUT TIME.
BUT MOVING FORWARD, THINKING
ABOUT HOW WE EXPAND THE SCOPE OF
OUTCOME MEASURES.
OBVIOUSLY WE HAVE TO DEFINE THIS
AND EMOTIONAL HEALTH AND
WELL-BEING IS A BIG THING.
CONCEPTUALIZING IT IN MULTIPLE
DIFFICULT WAYS.
I'M NOT HERE TO SUGGEST ONE WAY
OR THE OTHER.
WE MIGHT THINK ABOUT THIS WITH
RESPECT TO DIFFERENT CONTEXT.
WE CAN LOOK TO THE EMOTION
LITERATURE.
WE HAVE COLLEAGUES AT BERKLEY
WHO HAVE SPENT THEIR ENTIRE
CAREERS THINKING ABOUT HOW WE
DEFINE HAPPINESS.
IF WHY LOOK AT THOSE ACTUAL
DEFINITIONS, THEY MAP ON TO
MEASURES THAT WE REALLY HAVE
ALREADY AT OUR DISPOSAL.
SO THINGS LIKE THE PROMISE
AUTISM BATTERY HAS DIFFERENT
FACETS OF SUBJECTIVE WELL-BEING
AND EMOTIONAL DISTRESS.
IF WE LOOK TO THE SEVERE
PROFOUND INTELLECTUAL DISABILITY
LITERATURE, THERE IS NICE
REVIEWS ON HOW WE ASSESS MENTAL
HEALTH PROBLEMS AND DIFFERENT
FASELS OF WELL-BEING IN THAT
POPULATION.
AND THERE IS A FEW INSTRUMENTS
THAT YOU COULD ARGUE HAVE SOME
GOOD PSYCHOMELT RICK PROPERTIES.
CERTAINLY, WHILE THOSE WILL BE
MATCHED WITH RESPECT TOESS
EXPRESSIVE LANGUAGE, THIS
DOESN'T RECOGNIZE THAT SOME
PEOPLE HAVE DIFFERENCES IN
COGNITIVE ABILITIES BUT IT ALSO
DOESN'T NECESSARILY REFLECT THE
WAYS IN WHICH AUTISTIC PEOPLE,
MINIMALLY VERBAL OR NOT, MAY
MANIFEST OR EXPRESS THEIR
EMOTIONS.
SO I THINK WE REALLY HAVE TO
CONSIDER THAT PARTICULAR
SUBGROUP OF PEOPLE.
AND SO WE DON'T HAVE A LOT OF
EMOTIONAL WELL-BEING OR MENTAL
HEALTH MEASURES SPECIFICALLY
DESIGNED TO ASSESS THESE
CONSTRUCTS IN MINIMALLY VERBAL
AUTISTIC PEOPLE.
THE EMOTION DYSREGULATION
INTERVIEW OR INVENTORY HAS
INCLUDED SOME MINIMALLY VERBAL
PEOPLE AND THEY LOOKED AT
DIFFERENTIAL ITEM FUNCTIONING
BASED ON VERBAL ABILITIES THAT
WERE GOING IN THE RIGHT
DIRECTION.
AND ALL OF THESE PLACES ARE
GREAT TO START.
BUT I ALSO HAVE TO ACKNOWLEDGE,
THIS IS A REALLY BROAD CONCEPT.
DO WE REALLY THINK A LANGUAGE
INTERVENTION WILL CHANGE
SOMEONE'S FUNDAMENTAL SUBJECTIVE
WELL-BEING?
I THINK THAT'S THE GOAL.
THAT'S THE HOPE.
BUT CERTAINLY THAT IS A TALL
ORDER.
AND SO WE MIGHT ALSO NEED TO
THINK ABOUT HOW DO WE DEVELOP
ASSESSMENTS OR TOOLS OR
INSTRUMENTS OF EXPERIENCES THAT
ARE MORE CONFINED TO THE KINDS
OF CONTEXT AND SITUATIONS THAT
COMMUNICATION IS BEING FOCUSED
IN?
JUST A QUICK CAUTION AND
EXISTING MEASURES.
THIS IS A PUBLISHED STUDY.
BASICALLY THERE ARE INSTRUMENTS
OUT THERE, MANY OF WHICH WERE
NOT DESIGNED FOR USE WITH
INDIVIDUALS ACROSS THE LANGUAGE
RANGE.
AND THIS JUST SHOWS YOU THAT
INSTRUMENTS LIKE THE CHILD
BEHAVIOR CHECKLIST AND THE ADD
VERRANT BEHAVIOR CHECKLIST,
WHILE MEASURING SIMILAR
CONCEPTS, SHOWED DIFFERENT
PROFILES ACCORDING TO LANGUAGE
ABILITIES.
SO MINIMALLY VERBAL INDIVIDUALS
HERE SHOW LOW INTERNALIZING
SYMPTOMS WHEREAS HERE THEY ARE
QUITE HIGH IN LETHARGY WHICH YOU
MIGHT EXPECT TO BE MORE
COMPARABLE.
SO THERE ARE LOTS OF REASONS FOR
THIS.
ITEMS REQUIRE LANGUAGE AND MUCH
MORE REFLECTION ON INTERNAL
STATES.
AND THESE THINGS SEEM OBVIOUS
WHEN YOU LOOK TAT THAT WAY.
IT'S EASY TO OVERLOOK WHETHER WE
START TO TALK ABOUT LARGE
COLLABORATION AND SECONDARY DATA
ANALYSIS TO UNDERSTAND THIS
SUBGROUP OF PEOPLE.
I THINK THAT THERE IS A LOT OF
EXCITING THINGS THAT WE COULD DO
TO REALLY MOVE FORWARD IN TERMS
OF UNDERSTANDING MINIMALLY
VERBAL AND NON-SPEAKING PEOPLE.
I THINK THAT THIS GROUP IN
PARTICULAR WOULD BE REALLY
AMAZING TO THINK ABOUT HOW WE
PERCEIVE QUALITATIVE STUDIES TO
REALLY UNDERSTAND THE WAYS IN
WHICH MINIMALLY VERBAL OR
NON-SPEAKING PEOPLE ON THE
AUTISM SPECTRUM EXPRESS THEIR
EMOTIONS.
WHAT DO WHY MISS?
WHAT MIGHT OVERLAP WITH OTHER
INSTRUMENTS?
WE KNOW FROM SPEAKING
INDIVIDUALS STEMMING OFTEN IS
USED TO EXPRESS HAPPINESS AS
WELL AS FRUSTRATION OR EMOTION
REGULATION AND SO HOW DO WE USE
THAT INFORMATION?
IF WE TALK TO PARENTS OF THESE
MINIMALLY VERBAL AUTISTIC
PEOPLE, THEY WILL TELL US THAT
THEY KNOW WHEN THEIR SON OR
DAUGHTER OR LOVED ONE IS HAPPY
OR UPET AND SO HOW DO THEY KNOW?
AND SO THERE IS LOTS OF
DIFFERENT OBJECTIVE MEASURES AND
LOTS OF DIFFERENT THINGS WE CAN
USE TO INFORM OUTCOME
MEASUREMENT.
AND SO JUST A QUICK PLUG.
I KNOW WE ARE TALKING ABOUT
LANGUAGE INTERVENTIONS AND
OUTCOMES.
IF WE EXPAND RESEARCH TO FORK US
ON MENTAL HEALTH IN MINIMALLY
VERBAL AND NON-SPEAKING PEOPLE,
WE'LL DO A LOT TO FIGHT AGAINST
SOME OF THE ATTITUDES THAT
GIACOMO HIGHLIGHTED YESTERDAY.
SO WE NEED TO CHECK OUR OWN
ATTITUDES AND BIAS SYSTEM.
THOSE OF US OUT IN THE COMMUNITY
WITH RESPECT TO WHAT WE
PRIORITIZE FOR MINIMALLY VERBAL
AUTISTIC PEOPLE.
HOW WE VIEW MENTAL HEALTH AND
HOW WE PRIORITIZE THAT.
WE HAD A LOT OF GRANT REVIEWS
THAT REALLY QUESTION PARENTS
CAPABILITIES, OF REPORTING
INTERNAL STATES, SELF REPORTED
CAPABILITIES OF MINIMALLY VERBAL
PEOPLE.
THAT'S A REAL CHALLENGE WHEN YOU
CAN JUST SEE THE BIAS AND THE
STEREOTYPES THAT ARE COMING
THROUGH EVEN AT THE LEVEL OF
GRANT REVIEWS.
I HAVE A GRADUATE STUDENT I'LL
HIGHLIGHT QUICKLY WHO HAS
FUNDING FROM AUTISM SCIENCE
FOUNDATION TO LOOK AT EXISTING
MEASURES OF DEPRESSION AND ALSO
TO MOVE US FORWARD WITH SOME
QUALITATIVE RESEARCH TO
UNDERSTAND SOME OF THOSE
MANIFESTATIONS.
AND SO I'LL END BY SAYING,
LANGUAGE HAS A FUNCTION AND IT
HAS A PURPOSE.
REALLY MEASURING MEANINGFUL
OUTCOMES REALLY REQUIRES US TO
THINK ABOUT HOW WE WANT TO
CAPTURE PROGRESS WITH RESPECT TO
THAT LARGER PURPOSE.
AND THAT WE NEED TO MAKE SURE
THAT NOT ONLY WE DON'T HOWEVER
LOOK IT BUT WE HAVE TO TAKE A
MORE CAREFUL LOOK AT HOW TO
MEASURE THAT.
THANK YOU.
>>HELEN TAGER-FLUSBERG: THANK
YOU VERY MUCH, VANESSA.
THAT WAS AN ENLIGHTENING TALK
FOR SOMEONE LIKE ME WHO FOCUSES
TOO NARROWLY ON THE LANGUAGE
OUTCOME PIECE AND NOT THE BIGGER
PICTURE.
AND THAT BIGGER PICTURE, I
THINK, IS CRITICAL FOR ALL THE
KEY STAKEHOLDERS THAT WE ARE
TRYING TO REPRESENT AND DISCUSS
HEREBY.
SO WE'LL TURN NOW TO OUR FRIEND,
FREDRICK SCHICK, WHO WILL TALKED
ABOUT EYE TRACKING MEASURES FOR
MINIMALLY VERBAL POPULATIONS.
I'M EXCITED TO HEAR THIS WORK.
A LOT OF TALK ALMS ABOUT THE
EXTENT TO WHICH WE CAN AND
SHOULD BE USING EYE TRACKING AS
AN IMPLICIT MEASURE FOR THIS
POPULATION.
SO, THANK YOU FRED.
>>FREDERICK SHIC: SORRY.
OKAY, ALL RIGHT.
SO I HAVE SOME DISCLOSURES.
CONSULTANT FOR JENSEN AND ROCHE
AND ALSO TAKE VANESSA'S QUEUE
AND ADMIT I'M A COMPUTER
SCIENTIST SO I REALLY DON'T KNOW
ANYTHING ABOUT ANYTHING.
NOT EACH ABOUT COMPUTERS WHICH
IS ACTUALLY KIND OF SURPRISING.
SO, WHEN WE TALK ABOUT EYE
TRACKING, IN STUDIES OF AUTISM,
TYPICALLY WE ARE TALKING ABOUT
SETUPS THAT LOOK LIKE THIS.
THIS IS A TRADITIONAL LAB-BASED
DESKTOP MOUNTED OCULAR GRAPHIC
DARK PUPIL EYE TRACKING SYSTEM.
YOU CAN TELL IT IS DARK PUPIL
BECAUSE OF THE WAYS THAT THE
CAMERA WOULD BE ALIGNED WITH THE
EYE.
BUT YOU WOULDN'T EVEN KNOW THIS
IS AN EYE TRACKER EXCEPT FOR THE
PRESENCE OF TWO SMALL RED DOTS
INDICATING THAT INFRARED
LIGHTING IS BEING USED TO GET A
CORNEA REFLECTION THAT WILL
ALLOW THE EYE TRACKER TO HAVE A
REFERENCE POINT FOR THE PUPIL.
SO THIS SOUNDS LIKE THE MAIN
TYPE OF SETUP AND MOST OF THE
STUDIES WHEN WE THINK ABOUT
STUDIES THAT IS HAVE INFORMED US
ABOUT MINIMALLY VERBAL
INDIVIDUALS WITH ASD COME FROM
STUDIES OF TODDLERS.
AND BY-AND-LARGE, I'M NOT GOING
TO TALK TOO MUCH ABOUT THIS.
I THINK THERE IS A WEALTH OF
INFORMATION WE KNOW ABOUT
TODDLERS NOW.
THE THING THAT IS REALLY
PROMISING IS THAT NOW WE ARE
STARTING TO SEE SOME STUDIES
THAT ARE LOOKING AT EYE TRACKING
SPECIFICALLY USED IN THE CONTEXT
OF TREATMENT, WHICH I THINK IS
ONE OF THOSE THINGS THAT IT
WON'T GET BETTER UNLESS WE
ACTUALLY USE THESE.
SO, OF COURSE WHEN WE ARE
TALKING ABOUT MINIMALLY VERBAL
TODDLERS AND THEN TALKING ABOUT
MINIMALLY VERBAL OLDER CHILDREN
WITH ASD, IT'S NOT THE SAME.
THE MISSING INGREDIENT,
DISPARITY OR THE DISCONNECT, IS
DEVELOPMENT.
THE DEVELOPMENT HAS A LOT OF
DIFFERENT COMPLEX ROLES THAT
AREN'T ALWAYS IMMEDIATELY
OBVIOUS.
SO THIS IS A STUDY LOOKING AT
CHILDHOOD DISORDER, ASSUMED
UNDER ASD5.
SO IN CDD, THESE CHILDREN
TYPICALLY SHOW RAPID AND
SIGNIFICANT REGRESSION ABOUT 3
AND 4 YEARS OF AGE AND MOST OF
THEM AND AS MINIMALLY VERBAL,
MOST ARE IN THIS STUDY.
IN THIS PARTICULAR STUDY, THE
SCANNING PATTERNS OF THOSE
CHILDREN WHO HAVE CDD, ACTUALLY
LOOK A LOT MORE SIMILAR TO THE
SCANNING PATTERNS OF THE TIP
WOULD WOULD CALL DEVELOPING
CHILDREN.
WHEN YOU THINK ABOUT
DISTRIBUTION OF ATTENTION
BETWEEN THE EYES AND THE MOUTH.
THE GROUP THAT IS VERY DIFFERENT
FROM THE OTHERS ARE THOSE WHAT
WE MIGHT CONSIDER TO BE THE
VERBAL CHILDREN WITH ASD.
SUGGESTING THAT THIS MAY BE
ACTUALLY A DEVELOPMENTAL
COMPENSATORY MECHANISM.
THE ABSENCE OF WHICH MAY BE
REFLECTED IN THE CDD GROUP.
OF COURSE IT COULD BE ALL
RELATED TO OVERALL IQ LEVELS.
BUT IT IS ONE OF THE THINGS THAT
HIGHLIGHTS HOW INCLUSION OF
MINIMALLY VERBAL CHILDREN
ACTUALLY MAKES THE SCIENCE
BETTER BECAUSE IT ALLOWS US TO
EXPLORE AND LOOK AT AND THINK
ABOUT THOSE DEVELOPMENTAL
SYSTEMS THAT OTHERWISE MAY WORK
IN WAYS WE DON'T EXPECT.
THE OTHER PIECE IS THAT
OFTENTIMES WE ARE EXCLUDING
MINIMALLY VERBAL CHILDREN WITH
ASD FROM EYE TRACKING STUDIES,
WE ARE ALSO MISSING ALL OF THESE
OPPORTUNITIES TO REALLY BROADEN
THE SCIENCE.
AT THIS POINT, THERE IS SO MUCH
SCIENCE OUT THERE THAT IS IT
REALLY DOING A IT DISSERVICE NOT
JUST TO THE MINIMALLY VERBAL
CHILDREN WITH ASD BUT FOR ALL
CHILDREN WITH ASD BECAUSE WE ARE
NOT UNDERSTANDING THE FULL
PICTURES.
IF WE WANT TO GET THERE, THIS
BRINGS ME TO MY FIRST POINT.
ONE OF THE THICK WE SHOULD BE
DOING IS OMNI DIRECTIONAL
INCLUSION OF MINIMALLY VERBAL
CHILDREN WITH ASD INTO EYE
TRACKING STUDIES IN A
CHRONOLOGICAL AGE AND ALSO IN A
DEVELOPMENTAL AGE MESHED WAY.
WE SHOULD INCLUDE OLDER
MINIMALLY VERBAL CHILDREN WITH
ASD ALONGSIDE YOUNGER CHILDREN
WITH ASD.
THOSE LONGITUDINAL STUDIES ALLOW
US TO MAP THE EARLIER PRECURSORS
FOR LIKELY MEMBERSHIPPING TO
MINIMALLY VERBAL ASD GROUP AS
COMPARED TO NOT BECAUSE THAT
TELLS US ABOUT THEORETICALLY
IMPORTANT DEVELOPMENTAL
MECHANISMS AND ALSO PRACTICALLY
THINGS THAT MIGHT BE USEFUL FOR
TREATMENT PLANNING DOWN THE
LINE.
SO WHAT DO WE KNOW ABOUT
MINIMALLY VERBAL CHILDREN WITH
ASD RIGHT NOW?
I'M NOT GOING TO GOING INTO
DEPTH HERE BUT THERE IS A SMALL
NUMBER OF STUDIES USING EYE
TRACKING.
WORK BY THOMPSON AND COLLEAGUES,
PRELIMINARY WORK BY CAITLYN CUED
ACK AND OTHERS, AS WELL AS WORK
BY -- I BUTCHERED THAT NAME.
ARE HIGHLIGHTING ONE ASPECT THAT
SEEMS TO BE PRETTY COMMON ACROSS
THESE STUDIES WHICH IS THAT
THERE IS A PORTION OF THE
MINIMALLY VERBAL A SD GROUP WHO
ARE ESSENTIALLY LOSING DATA OR
ARE OFF TASK MORE THAN WOULD BE
EXPECTED.
AND THIS REALLY MAKES IT VERY
DIFFICULT TO I THINK INTERPRET
THESE EYE TRACKING MEASURES AS
THEY ARE DESIGNED.
SO THAT BRINGS ME TO THE SECOND
POINT WHICH IS THAT I THINK
ANOTHER PLACE THAT EYE TRACKING
STUDIES NEED TO GO IS WE NEED
NUANCED APPRECIATION OF LOST
DATA BECAUSE THEY IR NOT ON TASK
DOESN'T MEAN THEY ARE NOT DOING
ANYTHING.
EVEN IF THEY ARE -- YOUR EYES
ARE CLOSED, SOMETHING IS
HAPPENING.
AND THAT MEASUREMENT OF THOSE
PROCESSES CAN TELL US SOMETHING
SPECIFIC ABOUT WHAT IS HAPPENING
WITH THESE MINIMALLY VERBAL
CHILDREN.
SO HOW DO WE GET THERE?
ONE WAY IS THAT WE REALLY NEED A
MULTILEVEL QUANTIFICATION OF
LOST DATA AND ERROR.
WE KNOW THAT THESE SUPPOSED
QUALITY CONTROL VARIABLES ARE AS
ASSOCIATED WITH CLINICAL
PHENOTYPE IN ASD AS PRIMARY
VARIABLES ARE.
AND SO OF COURSE WE CAN VIEW
THIS AS A NUISANCE OR TURNING IT
ON ITS HEAD.
WE CAN VIEW THIS AS AN
OPPORTUNITY OF UNDERSTANDING A
LITTLE BIT MORE FULL EXPRESSION
OF AUTISM AS IT APPLIES TO
MINIMALLY VERBAL CHILDREN.
THE SECOND THING THAT WE SHOULD
BE DOING IN TERMS OF LOST DATA,
IS AUGMENTING OR EYE TRACKING
WITH ADDITIONAL TOOLS.
AND ONE PLACE THAT REALLY HAS A
LOT OF POTENTIAL IS THE USE OF
COMPUTATIONAL VISION TOOLS.
THEY HAVE MATURED
EXTRAORDINARILY.
THEY ARE NOT AT THE POINT WHERE
YOU CAN PULL IT OFF THE SHELF
AND INSTALL IT AND HOPE IT
WORKS, BUT IT IS ACTUALLY
GETTING TO THAT POINT.
DATA IN, RETRAIN THE DATA,
TRANSFER LEARNING, SOLVE THE
PARTICULAR PROBLEM YOU'RE
INTERESTED IN AND SOLVE IN AIR
QUOTES OF COURSE.
WE HAVE ALL THESE TRADITIONAL
EYE TRACKING MEASURES THAT HAVE
BEEN DISCUSSED IN THE LITERATURE
AND NOW WE ARE ADDING TO THIS
COMPUTER VISION.
SOME OF THE THINGS THAT COME
ALONG WITH COMPUTER VISION ARE
THE ABILITY TO THINK ABOUT
CHARACTERIZING THE FULL RANGE OF
ENGAGEMENT WITH TASK AND EYE
TRACKING MEASURES.
IT ALSO MEANS THAT WE CAN START
LOOKING AT ADDITIONAL THINGS
LIKE -- GOING BACK TO WHAT
VANESSA WAS TALKING ABOUT.
WE DON'T KNOW IF EXPRESSIONS ARE
VIEWED IN THE SAME WAY.
ONE THING THESE SYSTEMS CAN DO
IS QUANTIFY THE PRECURSORS WE
TYPICALLY CONSIDER AS FACIAL
EXPRESSION THAT IS CAN BE REALLY
USEFUL.
WE WON'T KNOW THE EXPRESSIONS
AREN'T THE SAME UNLESS WE ARE
MEASURING THEM.
AND ON TOP OF ALL OF THIS,
APPLYING OTHER TYPE OF
COMPLEMENTARY MODALITIES TO
UNDERSTAND THE FULL CONTEXT OF
WHAT EYE TRACKING IS TELLING US
ABOUT ABOUT LOOPING PATTERNS.
WE TALKED ABOUT A TON OF
VARIABLES AND THE ONLY WAY WE'LL
MAKE PROGRESS IN THAT IS BY
REALLY APPLYING COMPLEX MONDAY
LEARNING -- IT'S ONE OF THE WAYS
THAT THEY CAN SIMPLIFY OUR
ABILITY TO MAKE USE OF THIS
DATA.
BASICALLY UNDERSTANDING THE
COMMONALTIES BETWEEN ALL THESE
DIFFERENT TYPES OF MEASURINGS
INTO SOMETHING MORE USEABLE.
SO THINKING ABOUT SOME
ADDITIONAL THINGS.
I'M GOING TO GO THROUGH REALLY
FAST NOW.
COMPUTER VISION GIVES US THESE
TOOLS THAT ALLOW US TO TAKE THIS
OUT OF THE LABORATORY AND MOVE
IT INTO HANDHELD CONSUMER
DEVICES.
WE HAVE SEEN THIS ALREADY IN
TERMS OF FACIAL EXPRESSION,
QUANTIFICATION IN LARGE SAMPLES
IN TERMS OF EYE TRACKING ON AN
iPAD AND iPHONE.
AND THIS MAY GIVE US ALSO THIS
OTHER PIECE OF EXPANDING OUR
ABILITY TO REACH UNDERSERVED
POPULATIONS.
THE OTHER THING IT GIVES US IS
DEPTH AND ACCESS.
ONE OF THE THINGS THAT COMES OUT
OF THE RESEARCH IN LOOKING AT
EYE TRACKING AND LANGUAGE IS
THAT NOT ALL MEASURES WORK THE
SAME WAY IN INDIVIDUALS WHO ARE
MINIMALLY VERBAL WITH ASD.
ANOTHER THING, IF WE HAVE THESE
THINGS IN HAND, IF WE HAVE
ACCESSIBILITY AND ARE ABLE TO
GIVE THESE SYSTEMS OUT AND MAKE
THEM MORE READILY AVAILABLE,
THIS MEANS WE CAN USE THESE TO
UNDERSTAND -- AND USE FOR
SPECIFIC PURPOSES.
WORK SHOWED THAT CHILDREN WITH
ASD WHO WERE OPERATING IN THIS
SLIGHTLY CONTROVERSIAL STUDY
WHERE A FACILITATOR IS HOLDING A
SOUND BOARD FOR AN INDIVIDUAL
WITH ASD WHO IS TAPPING ON TO
THE TOUCH BOARD IN ORDER TO
WRITE.
IT SHOWED THAT THE EYE OF THE
INDIVIDUAL WITH AUTISM, THESE
ARE NON-SPEAKING INDIVIDUALS,
MOVES BEFORE THE FINGER PRESS
SUGGESTING THEY ARE INDEED THE
ONES DRIVING THIS COMMUNICATION.
THIS IS JUST A SIMPLE EXAMPLE OF
HOW WE COULD HOPEFULLY REMOVE
THE PERSON FROM THE LOOP.
THIS IS A SYSTEM TO LOOK AT
2002.
OVER TWO DECADES AGO.
THESE SYSTEMS FOR RAPID TYPING
WITH THE EYES, I THINK THEY SAID
IT GOES UP TO ABOUT 25 WORDS PER
MINUTED.
SO EXTREMELY RAPID.
OF COURSE THIS WOULD NOT WORK
FOR EVERY INDIVIDUAL WITH ASD
BUT IT MIGHT WORK FOR SOME.
THE REASON WHY I BRING THIS UP
IS BECAUSE THIS IS IN A NEW AGE
WHERE A NEW AGE OF GENITIVE AI
WHERE WE HAVE AI SYSTEMS TALKING
TO EACH OTHER MAKING FULL
PARAGRAPHS, BEING ABLE TO HAVE
CONVERSATIONS AND JUST A MATTER
OF TIME BEFORE WE TAKE SYSTEMS
LIKE THIS WHERE YOU TYPE WITH
YOUR EYES AND TURN THEM INTO
FULL CONVERSATIONS USING THESE
AI.
AND SO, OF COURSE WE DON'T HAVE
TO STOP THERE.
ALL OF THESE SYSTEMS,
MULTIMETHOD SYSTEMS, CAN BE
BRIDGED INTO THESE AI SYSTEMS TO
PROVIDE GREATER EXTENSIONS OF
THE INDIVIDUAL WITH AUTISM.
THE IDEA HERE IS THAT THESE
SYSTEMS WORK WELL.
THIS DASHER SYSTEM FOR EYE
TAPPING WORKS WELL BECAUSE IT
PREDICTS WHAT THE NEXT CHARACTER
SHOULD BE.
IN MANY WAYS WE CAN CONSIDER AI
THE NEXT STEP IN THAT PREDICTING
FURTHER WHAT THAT INDIVIDUAL
WITH ASD WOULD WANT TO SAY.
THERE IS THE SLIPPERY SLOPE HERE
WE CAN GET INTO IF IT'S OF
INTEREST.
THE LAST THING, OR NEXT TO THE
LAST THING, WE NEED MORE PRECISE
MEASURES.
NO WAY AROUND THIS.
IF WE WANT BETTER MEASURES OF
EYE TRACKING MEASURES OF
RECEPTIVE LANGUAGE SKILLS, WE
HAVE TO BUILD IT.
THIS IS ONE OF THE MOST
RIGULOUSLY DESIGNED MEASURES I
HAVE SEEN IN EYE TRACKING
PERIOD.
AND EVENLY HERE FOR THE
MINIMALLY VERBAL CHILDREN YOU
CAN SEE THERE IS A LOT OF
HETEROGENEITY.
THAT WE EXPECT.
NOT ALL MEASURES WILL WORK THE
SAME WAY GIVEN THE LARGE
EXPANSIVE DEVELOPMENTAL
HETEROGENEITY WE SEE IN
MINIMALLY VERBAL CHILDREN.
THIS IS WORK WE NEED TO DO.
WE ALSO NEED TO ADDRESS WHICH
TYPE OF TECHNOLOGY FOR WHOM SOME
ARE GOING TO RESPOND WELL TO
THESE SCREENS AND SOME WILL NEED
SOMETHING MORE TO PAY ATTENTION
TO THE SCREEN.
SOME WILL IN FACT NOT EVEN BE
ABLE TO PAY ATTENTION TO THE
SCREENS AND WILL NEED TO GO TO
PHYSICAL EMBODIED SYSTEMS LIKE
ROBOTS OR MECHANICAL AUTOMATION.
AND THIS ALL BASICALLY SUGGESTS
THAT WE NEED TO DEVELOP A
SCIENCE OF ADAPTING OUR TASKS TO
THE DIFFERENT PREFERENCES,
BIASES, ABILITIES OF MINIMALLY
VERBAL INDIVIDUALS WITH ASD IN
THE SAME WAY WE WOULD TRANSLATE
A STANDARD MEASURE INTO SPANISH,
WHICH WE THINK ABOUT TRANSLATING
THIS INTO DIFFERENT MODALITIES.
THE LAST PART IS THERE IS A
POSSIBILITY THAT WE CAN START
THINKING ABOUT INTERACTIVE EYE
TRACKING IN A WAY WE HAVE NEVER
THOUGHT OF BEFORE.
PREVIOUS WORK THAT WE HAVE DONE
SECRETARIES THAT INTERACTIVE EYE
TRACKING SYSTEMS CAN LEAD A
YOUNG CHILD WITH ASD INTO
LEARNING A NEW STRATEGY FOR
LOOKING AT SOCIAL INFORMATION IN
COMPLEX SOCIAL SCENES.
WHAT DO WE DO NOW WITH AI TO
GENERATE UNLIMITED NUMBERS OF
STIMULI ADAPTIVELY ON THE BASIS
OF DIFFERENT TYPES OF CRITERIA
IN ANY SITUATION YOU CAN IMAGINE
YOU CAN GENERATE NEW TYPES OF
IMAGES.
WHAT WOULD WE DO WITH THAT
POWER?
ALL OF THESE CLIP ART I HAVE PUT
INTO THIS PRESENTATION ARE
GENERATED BY AI.
NONE OF THE PEOPLE EXIST.
NONE OF THE OBJECTS, NONE OF
THESE EYE TRACK EARLS EXIST W
THIS TYPE OF TECHNOLOGY, YOU CAN
IMAGINE HOOKING UP INTO THE
CREATION, OPTIMIZATION OF PORTO
COLS, SYSTEMS THAT CAN ADAPT
REFINE BOTH HOW TO COLLECT DATA
AND WHAT TYPE OF DATA WE ARE
COLLECTING FROM MINIMALLY VERBAL
CHILDREN TO MAKE BETTER
PREDICTIONS TOWARDS SOME
SPECIFIC OUTCOMES WE CHOOSE.
THE LAST THING I WILL SAY IS
THAT THIS IS SOMETHING THAT I
SEE ALMOST EVERY DAY, WHICH IS
THE -- IF YOU LOOK AT THIS, WHAT
I SEE, I SEE A DRUNKEN OCTOPUS.
I SEE IT EVERY DAY.
MAYBE YOU SEE IT ALSO.
AND MAYBE YOU WANT TO FIGHT IT
BECAUSE IT LOOKS LIKE IT WANTS
TO BOX.
BUT CLEARLY, I'M JUST MAKING
THAT UP.
LIKE I SAW THAT AND IT'S STUCK
IN MY HEAD AND IT'S -- THE MORE
I THINK ABOUT IT, ALL THESE
SOCIAL GREGS AND SOCIAL
CONVENTIONS WE HAVE,
COMMUNICATION, OUR LANGUAGE,
THESE ARE THINGS THAT ARE
SYSTEMS THAT WE HAVE UNIVERSALLY
DECIDED TO DILUTE OURSELVES INTO
BELIEVING ARE COMMON AND
UNIVERSAL WHEN THEY ARE NOT.
AND SO, I WOULD SIGH THAT WE
HAVE TO BE CAREFUL IN OUR
STUDIES OF EYE TRACKING AND
DEFINING OUTCOME MEASURES IN
ASSUMING WHAT IS CORRECT AND
GOOD WITH THE RECOGNITION THAT
LIKE THIS DRUNK OCTOPUS IS JUST
A FABRICATION.
IF AI CAN LEARN THIS LANGUAGE OF
SPOKEN WORD FOR NEUROTIP CALLS,
MY HOPE IS THAT WE CAN ALSO
APPLY THAT SAME TYPE OF
TECHNOLOGY TOW LEARN THE
INDIVIDUAL LANGUAGE OF PEOPLE
WITH ASD, ONE THAT INCLUDES THE
REPRESENTATION IN SOME TYPE OF
COLLECTIVE COMPROMISE.
AND SO, THANK YOU.
SORRY.
I'M SO OVER.
>>HELEN TAGER-FLUSBERG: THANK
YOU VERY MUCH, FRED.
THERE WAS AN AWFUL LOT FOR YOU
TO PRESENT AND EVEN MORE FOR THE
REST OF US TO TRY TO TAKE IN.
BUT WE REALLY -- IT'S AMAZING TO
SEE WHAT IS HAPPENING IN THE
WORLD OF EYE TRACKING.
WE ARE GOING TO TURN TO A
PRESENTATION TO NANCY GRADY.
UNFORTUNATELY SHE IS NOT ABLE TO
JOIN US IN PERSON THIS
AFTERNOON.
BUT SHE HAS PREPARED HER
REMARKS.
JUDITH, I THINK YOU'RE GOING TO
BE PRESENTING THAT?
[ BACKGROUND NOISE ]
>>CONNIE KASARI: JUDITH, ARE
YOU TRYING TO -- YOU NEED TO
SHARE YOUR SCREEN.
>>DR. COOPER DO YOU HAVE A
VIDEO?
>>JUDITH COOPER: YES, ARE YOU
NOT SEEING THIS?
HOLD ON JUST A MINUTE.
>>SHE'LL BE HERE IN TWO SECOND
IF YOU NEED HER.
>>JUDITH COOPER: I KNOW WHAT I
DID WRONG.
I JUST HAVE TO GET OUT OF THIS.
>>CONNIE KASARI: IT'S CLEAR WE
NEED IMPROVED TECHNOLOGY.
>>JUDITH COOPER: STOP, STOP.
I'M TRYING TO SHARE SCREEN.
HERE WE GO.
>>THERE YOU GO.
>>JUDITH COOPER: ALL RIGHT.
>>SHARE SOUND.
>>JUDITH COOPER: OKAY, I'M
HOPING IT IS ALREADY SHARED.
>>I'M NANCY GRADY AND WE ARE
TALKING ABOUT SOCIAL CUES IN
AUTISTIC CHILDREN WITH MINIMAL
SPEECH.
LET'S STEP BACK AND --
[ INAUDIBLE ]
SO ALL OF --
[ DISTORTED VIDEO ]
[ DISTORTED SOUND ]
STANDARDIZED MEASURES OF
COMMUNICATION ARE HELPFUL TO US.
STANDARDIZED MEASURES THAT ARE
DERIVED --
[ DISTORTED AUDIO ]
>>HELEN TAGER-FLUSBERG: I THINK
IT WAS DIFFICULT FOR SOME OF US
TO HEAR EVERYTHING, NANCY WAS
SAYING AND THE SLIDES SEEMED A
LITTLE BIT SMALL; BUT WE HOPE
THAT PERHAPS THROUGH THE EDITING
WHEN WE DISSEMINATE THE WEBINAR,
WE'LL BE ABLE TO CAPTURE MORE OF
WHAT NANCY WAS PRESENTING ON THE
CRUCIAL OUTCOMES OF SOCIAL
COMMUNICATION.
AND LIKE OUR OTHER SPEAKERS, PUT
THAT IN A BROADER PERSPECTIVE.
WE ARE GOING TO TURN NOW TO
COMMENTARY ON THIS FROM LEONARD
ABBEDUTO.
LEN, PLEASE GO AHEAD.
>>LEONARD ABBEDUTO: I'M NOT
GOING TO USE ANY SLIDES SINCE IT
ALMOST ALWAYS DOESN'T WORK FOR
ME WITH TECHNOLOGY.
SO, FIRST OF ALL THESE WERE FOUR
GREAT PRESENTATIONS AND I
PROBABLY SHOULD JUST START BY
SAYING, WOW.
BUT I WON'T.
I'LL DO A LITTLE MORE
COMMENTARY.
SO THE FIRST THING I SHOULD SAY
IS THAT THERE REALLY IS NO
PERFECT OUTCOME MEASURE AND I
THINK EVERYTHING HAS STRENGTHS
AND LIMITATIONS.
SO, SOME OF US WE HAVE
PARTICULAR BIASES OF MEASURES WE
ARE COMFORTABLE WITH AND SO I'LL
TAKE THAT INTO ACCOUNT WITH MY
COMMENTS.
I WANTED TO COMMENT A LITTLE BIT
ON VANESSA'S WONDERFUL
PRESENTATION.
VANESSA WAS A LITTLE BIT
APOLOGETIC ABOUT NOT FOCUSING ON
LANGUAGE BUT I THINK THAT WAS
REALLY A WONDERFUL -- BECAUSE
OFTENTIMES WHEN WE WRITE OUR
PUBLICATIONS ON LANGUAGE, WE'LL
SAY, AND THIS IS IMPORTANT
BECAUSE IT IMPACTS HOW YOU
LEARN.
HOW YOU'RE INCLUDED IN THE WORLD
AND HOW HAPPY YOU ARE AND ALL OF
THESE OTHER MEASURES.
I THINK THE IDEA THAT WE NEED TO
BEGIN TO TIE LANGUAGE OUTCOME
MEASURES TO THESE BROADER
FUNCTIONAL OUTCOME MEASURES IN
OTHER DOMAINS IS REALLY
CRITICAL.
WE JUST PUBLISHED SOMETHING
RECENTLY IN A DIFFERENT CONTEXT,
ON INDIVIDUALS WITH FRAGILE X
SHOWING SOME OF OUR LANGUAGE
OUTCOME MEASURES ARE TIED TO
LEVELS OF ADAPTIVE BEHAVIOR AND
THE CAPACITY FOR SELF
DETERMINATION.
AND I THINK THOSE ARE THE
MEASURES THAT REALLY WILL HELP
US ARGUE THAT INTERVENTIONS ARE
HAVING A BIG IMPACT.
SO I THINK IT IS REALLY
CRITICAL.
THE OTHER THING IS I THINK THAT
ISSUES OF BEHAVIORAL HEALTH AND
EMOTIONAL WELL-BEING, THOSE ARE
FACTORS THAT WILL MODERATE THE
EFFECTS OF ANYTHING INTERVENTION
ON LEARNING OUTCOMES.
IF ONE IS NOT ENGAGED, IF ONE IS
UNHAPPY, IF ONE IS SOCIALLY
ANXIOUS, ALL OF THOSE THINGS
WILL LIMIT INTERVENTIONS.
SO I THINK HER RESEARCH AND HER
COMMENTS REALLY ADD A CRITICAL
DIMENSION TO WHAT WE DO IN THE
LANGUAGE INTERVENTION FIELD.
FRED'S TALK IS ALWAYS SO
SOPHISTICATED AND ALWAYS
EMBARRASSES ME ABOUT HOW LITTLE
I KNOW ABOUT TECHNOLOGY.
I WANT TO MAKE A COUPLE OF
COMMENTS ON EYE TRACKING.
I THINK THE BEAUTY OF EYE
TRACKING WHICH FRED SO NICELY
ILLUSTRATED, WAS THE FACT THAT
WE CAN OVERCOME SOME OF THE
QUOTE/UNQUOTE PERFORMANCE
LIMITATIONS OF INDIVIDUALS TO
REALLY UNDERSTAND WHAT IS GOING
ON IN THEIR HEAD, WHAT THEY
KNOW, WHAT THEIR INTENTIONS ARE.
AND I THINK THAT IS INCREDIBLY
VALUABLE.
I THINK HIS POINT ABOUT LOST
DATA IS OFTEN NEGLECTED IN THE
FIELD WHEN WE USE THESE
AUTOMATED MEASURES.
I THINK THAT RECOGNIZING WE MAY
NEED TO DO SOME TRAINING THROUGH
BEHAVIOR ANALYSTS IN TERMS OF
GETTING PEOPLE READY TO
PARTICIPATE IN EYE TRACKING SO
WE HAVE MORE PEOPLE THAT CAN
PARTICIPATE AND FEWER LOST DATA
POINTS IS REALLY CRITICAL.
I DO THINK THAT THE THINGS THAT
WE NEED TO THINK ABOUT AS WE
LOOK AT THESE MORE SUBTLE
TECHNOLOGICAL MEASURES IS ARE
THEY TIED -- CAN WE SHOW THEY
ARE TIED TO MORE FUNCTIONAL
OUTCOME MEASURES?
IF EYE TRACKING DOESN'T PREDICT
COMMUNICATION USE AND MORE
NATURALISTIC SETTINGS, THAT
BECOMES PROBLEMATIC.
I THINK WE NEED TO HAVE THOSE
KINDS OF DATA.
I ALSO THINK EYE TRACKING
MEASURES, WE NEED TO BEGIN TO DO
REALLY SERIOUS PSYCHOMETRIC
WORK.
WE NEED TO ASK ABOUT ISSUES OF
CONSTRUCT VALIDITIY, TEST FOR
RELIABILITY AND PRACTICE EFFECTS
AND SO ON.
WE ARE TO THE POINT WITH MANY OF
THESE MEASURES WE CAN BEGIN TO
DO THAT.
I THINK -- I WOULD ALSO THINK
THAT WONG OF THE THINGS THAT
NANCY DIDN'T TOUCH ON THIS TOO
MUCH BUT I THINK WHEN WE THINK
ABOUT THE TIMEFRAME OF
MEASUREMENT AND INTERVENTION
STUDIES, UNFORTUNATELY WE TAKE
PRE AND POST AND A LITTLE BIT OF
MAINTENANCE AND SOME OF THESE
INTERVENTIONS.
BUT WE EXPECT THAT LEARNING WILL
CONTINUE TO IMPROVE OVER TIME.
SO WE REALLY NEED A LONGER
DURATION OF ASSESSMENTS AND
INTERVENTIONS TO UNDERSTAND
THEIR EFFECTS.
AND I THINK THAT IS PARTICULARLY
TRUE WHEN WE TALK ABOUT
CAREGIVER IMPLEMENTED
INTERVENTIONS WHERE THE EFFECTS
MAY BE REALLY DELAYED.
AND I THINK THAT HAS AN IMPACT,
THAT IS IMPACTED BY THE FUNDING
MECHANISMS WE HAVE THAT HAVE
THESE FIVE YEAR CYCLES.
THAT IS SOMETHING TO THINK
ABOUT.
I WANT TO ALSO JUST KIND OF
ARGUE A LITTLE BIT FOR US TO
RELY MORE ON NATURALISTIC
COMMUNICATION SAMPLING WHERE WE
ARE REALLY LOOKING AT PEOPLE IN
EVERY DAY MEANINGFUL CONTEXT AND
OBSERVING THEIR BEHAVIOR
MAKING -- THE VALUE OF THAT IS
WE CAN LOOK AT COMMUNICATION
WHETHER INDEPENDENT OF MODALITY.
I THINK THAT IDEALLY IT IS GREAT
TO LOOK AT, HAVE LOTS OF DATA
POINTS OVER MANY DIFFERENT
CONTEXT IN A PERSON'S LIFE.
AS CATHY POINTED OUT, THAT IS
NOT FEASIBLE.
I DO THINK THAT AS ARTIFICIAL
INTELLIGENCE AND MACHINE
LEARNING IMPROVE, I THINK THAT
MAYBE THAT BECOMES MORE
REALISTIC.
IN THE SHORT TERNAL, I THINK WE
HAVE TO TAKE BRIEF SAMPLES SO WE
ARE NOT UNDULY BURDENING
RESEARCHERS OR FAMILIES IN TERMS
OF HOW OFTEN WE ARE IN THEIR
LIVES.
I THINK IF WE GO WITH GRIEF
SAMPLES WE REALLY NEED TO
BALANCE NATURALISTIC SETTINGS
WITH STANDARDIZATION.
AND I THINK THE BASK IS A NICE
EXAMPLE OF THAT.
IT'S NATURALISTIC.
BUT THERE IS STRUCTURE IN TERMS
OF HOW YOU'RE DOING IT.
IF WE DON'T HAVE STRUCTURE, IF
WE DON'T HAVE SOME
STANDARDIZATION OF CONTENT AND
STANDARDIZATION OF THE PARTNER'S
BEHAVIOR, IT BECOMES REALLY
DIFFICULT TO HAVE COMPARABLE
ASSESSMENTS OVER TIME TO LOOK AT
AN INDIVIDUAL IN WHICH AN
INDIVIDUAL IS CHANGED.
SO WE REALLY NEED TO BALANCE
NATURALISTIC ASSESSMENTS WITH
STRUCTURE AND STANDARDIZATION.
WE HAVE DONE THAT IN DIFFERENT
POPULATIONS THAT HAVE PHRASED
SPEECH LOOKING AT EXPRESSIVE
LANGUAGE SAMPLEELING AND IT IS
DOABLE.
WE SHOULD SHOWN YOU CAN TRAIN
PARENTS TO BE JUST AS EVENT.
ADMINISTRATION OF THESE MEASURES
AND ADHERING TO STRUCTURE WITH
TRAINING AS EXAMINERS.
SO I THINK THERE IS LOT OF
THINGS WE NEED TO DO.
BUT I THINK STRUCTURE IS
CRITICAL IF WE ARE GOING TO HAVE
SHORT ASSESSMENTS.
A COUPLE OF OTHER POINTED I
THINK ARE CRITICAL TO ANYTHING
WE DO WITH OUTCOME MEASURES.
WE REALLY NEED TO THINK ABOUT
THE PSYCHOMETRIC PROPERTIES.
AND WE NEED TO LOOK AT THOSE
BORING THINGS LIKE TEST RETEST
RELIABILITY AND PRACTICE EFFECTS
AND ALL OF THAT.
AND TO DO THAT, YOU NEED A
FAIRLY LARGE SAMPLE OF
PARTICIPANTS, WHICH WILL BE A
CHALLENGE, I THINK, FOR OUR
FIELD.
AND JUST ONE EXAMPLE, WE DID IN
OUR STUDIES OF DIFFERENT GROUPS
OF INDIVIDUALS WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES
AS WELL AS INDIVIDUALS WITH
AUTISM, WE HAD CLOSE TO 100
PARTICIPANTS SO WE CAN REALLY
GENERATE AND SHOW THAT WE HAVE
GOOD TEST RETEST RELIABILITY AND
ALL THOSE THINGS.
AND NO PRACTICE EFFECTS.
BUT 100 PARTICIPANTS WORKS AT A
GROUP LEVEL T DOESN'T WORK VERY
WELL WHEN YOU WANT TO HAVE AN
INDIVIDUALIZED MEASURE LIKE
RELIABLE INDEX OF CHANGE.
AND SO, WHEN WE LOOK AT
STANDARDIZED TESTS, WHICH I
THINK ARE NOT ADEQUATE FOR
OUTCOME MEASURES, WE ARE TALKING
ABOUT STANDARDIZATION ON SAMPLES
OF HUNDREDS IF NOT THOUSANDS OF
PARTICIPANTS.
SO I THINK ONE OF THE
CHANNELLESS FOR THE FIELD THEN
IS MAYBE AS WE DO INTERVENTIONS
IS TO BUILD IN SOME PSYCHOMETRIC
WORK AND AGGREGATE ACROSS
STUDIES.
SO MAYBE WE HAVE A LONGER
PLACEBO LEAD IN PHASE TO A
TREATMENT TRIAL WHERE WE CAN
LOOK AT TEST RETEST RELIABILITY
PRACTICE EFFECTS, CONSTRUCT
VALIDITY AND IF WE DO THE SAME
SORTS OF MEASURES ACROSS
MULTIPLE INTERVENTIONS, WE MAY
GET THERE IN TERMS OF
PSYCHOMETRICS.
AND THEN THE LAST COMMENTS I'LL
MAKE REALLY HAVE TO DO WITH KIND
OF THE PARTICIPANTS IN OUR
SAMPLE OFTENTIMES WERE NOT VERY
GOOD ABOUT CREATING PSYCHOMELT
RICK WORK THAT MAPS ON TO WHO
ARE THE PEOPLE MOST LIKELY TO BE
INTERVENTIONS.
SO IF WE CREATE PSYCHOMETRIC
PROPERTIES FOR ONE SAMPLE BUT
THOSE AREN'T THE PEOPLE IN OUR
INTERVENTION, WE HAVE DONE A
DISSERVICE.
AND MY LAST POINT IS THAT WE
REALLY NEED, WHEN WE CREATE
THESE MEASURES, WE NEED TO
REALLY THINK ABOUT THE DIVERSITY
OF OUR SAMPLES.
RIGHT NOW, FOR EXAMPLE, IF WE
ARE DOING WORK ON LANGUAGE, WE
HAVE VIRTUALLY NO MEASURES OF
LANGUAGE THAT ARE
PSYCHOMETRICALLY VALIDATED IF
ARE SPANISH SPEAKERS, AS ONE
EXAMPLE.
AND THAT MEANS THAT THESE PEOPLE
ARE CUT OUT OF TREATMENT TRIALS
AND THEREFORE THAT HURDLE OUR
SCIENCE.
IT ALSO HURTS THEM IN TERMS OF
ACCESS TO BENEFITS.
DIVERSITY IS JUST AN ABSOLUTELY
CRITICAL THING WHEN WE ARE
TALKING ABOUT OUTCOME
MEASURINGS.
I'M SORRY TO GO OVER A LITTLE
BIT BUT THAT'S IT FOR ME.
THANK YOU.
>>HELEN TAGER-FLUSBERG: THANK
YOU, LEN.
YOU BROUGHT UP SO MANY IMPORTANT
POINTS AND REALLY REMINDED US
HOW CHALLENGING IT IS TO WORK ON
OUTCOME MEASURES THAT ARE GOING
TO BE MEANINGFUL FOR THE FULL
RANGE OF PEOPLE WHO NOT ONLY ARE
BUT REALLY SHOULD BE IN OUR
INTERVENTIONS RESEARCH.
THANK YOU VERY MUCH.
I'M GOING TO TURN THE FLOOR BACK
TO CONNIE WHO IS GOING TO
INTRODUCE OUR NEXT SESSION.
>>CONNIE KASARI: MOVING RIGHT
ALONG.
WE ARE DOING WELL ON TIME SO
THIS IS GREAT.
SO, I WANT TO MAKE A COMMENT
ABOUT SO FAR, WE HAD THIS VERY
RICH DISCUSSION YESTERDAY AND
TODAY.
AND FROM PRACTITIONERS AND
CLINICIANS, FROM RESEARCHERS AND
FROM PARENTS OF MINIMALLY VERBAL
AND OFTENTIMES WITH CO-OCCURRING
INTELLECTUAL DISABILITY.
THAT IS A REALLY IMPORTANT
VOICE.
THE PARENTS ARE REALLY A SECOND
VOICE.
THEY ARE SPEAKING FOR THEIR
CHILDREN OR ADULTS WHO CANNOT
SPEAK FOR THEMSELVES.
WE HAVEN'T HEARD AS MUCH FROM
PEOPLE WHO ARE SPEAKING IN FIRST
VOICE.
SO WE ARE VERY PLEASED THAT WE
HAVE TWO SPEAKERS TODAY WHO ARE
BEING VERY COURAGEOUS IN HAVING
A CONVERSATION THAT IS MODERATED
BY A VASE VASE WHO HAS BEEN
SPENDING HIS -- SARAH SANDERS
JASER -- WHO HAS BEEN SPENDING
HIS TIME WITH THESE INDIVIDUALS.
-- VICK RAM JASWALL.
I SPENT A BIT OF TIME WITH GRANT
BLASCO AND GEORGE ZIMMERMAN.
I'M THRILLED THEY ARE HERE TO
TALK.
WE ARE GOING TO START WITH A FEW
MINUTES FROM JORDYN WHO DIDN'T
SPEAK YESTERDAY BY HERSELF.
SHE WILL SPEAK FOR A FEW MINUTES
AND THEN VICK RAM WILL MODERATE
A CONVERSATION BETWEEN THE THREE
OF THEM.
SO THIS IS REALLY IMPORTANT AND
WE ARE REALLY HAPPY THAT YOU'RE
HERE.
JORDYN?
>>HI, EVERYONE.
I'M GEORGE ZIMMERMAN.
THROUGH VISUAL ACCESS I'M A
WHITE WOMAN WITH WAVY BROWN
HAIR.
I'M WARING A GREEN BLOUSE AND
SITTING IN FRONT OF TWO FLORAL
PAINTINGS.
I COMMUNICATE BY TYPING LETTER
BY LETTER ON AN iPAD WHICH
THEN SPEAKS MY WORDS ALLOWED.
THANKS TO THE CO-CHAIRS FOR
HAVING ME PARTICIPATE IN THIS
WEBINAR.
NOW, BEFORE WE GET INTO THE
CONVERSATION ASPECT THIS
DISCUSSION, I'M GOING TO SHARE
MY OWN LIVED EXPERIENCE AS A
NON-SPEAKING AUTISTIC PERSON WHO
HAS BEEN CALLED SEVERE AND
PROFOUND AND WILL INCLUDE
RESEARCH RECOMMENDATIONS FOR
CONSIDERATION.
WHILE I'M EXTREMELY HONORED TO
SHARE WITH ALL OF YOU, I WANT TO
POINT OUT THAT AN ESTIMATED
THIRT-40% OF THE MORE THAN 5
MILLION AUTISTIC PEOPLE LIKE
MYSELF IN THE UNITED STATES,
ALSO RELY ON COMMUNICATION
SUPPORT.
BUT MOST DON'T HAVE IT AS WAS
SAID YESTERDAY.
I'M ONLY ONE SPEAKING AUTISTIC
PERSON AND WHILE WE MAY HAVE
SOME THINGS IN COMMON, I CAN
ONLY SHARE MY EXPERIENCE ALONE
AND DO NOT AND CANNOT CLAIM TO
REPRESENT MORE THAN A MILLION
OTHERS.
AS A YOUNG KID, I WAS PUT ON A
PATH OF SEGREGATION.
PLACES SEEMED TO ASSUME THAT
BECAUSE I COULDN'T COMMUNICATE
RELIABLY WITH SPEECH AND HAD
WHAT THEY REFERRED TO AS
CHALLENGING BEHAVIORS THAT THEY
DIDN'T NEED TO MAKE SPACE FOR
ME.
BUT AS I WERE, LEGALLY, I HAD
EVERY RIGHT TO BE INCLUDED IN MY
SCHOOL AND COMMUNITY.
ACCESS TO RELIABLE
COMMUNICATIONS SHOULD HAVE BEEN
PROVIDED TO ME BUT IT SHOULD NOT
HAVE BEEN -- TO LEARN, PLAY OR
THRIVE.
AS GRANT SHARED DURING THE
STAKEHOLDER PANEL YESTERDAY, AND
WHICH I RELATED TO THIS LACK OF
COMMUNICATION CAUSED A VICIOUS
CYCLE OF TRAUMA WHICH IS
IMPACTED ME DEEPLY.
THIS IS ALL ONE REASON
RESEARCHERS MUST PRIORITIZE
COMMUNICATION SUPPORT FOR YOUNG
CHILDREN WHO NEED IT AS EARLY AS
POSSIBLE AND PUSH LEGISLATION
THAT INCREASES INCLUSIVE
PRACTICES, WHILE DECREASING
SEGREGATION.
LATER, I RECEIVED AN IQ SCORE OF
61.
THE ASSUMPTIONS YOU SHOULD LYING
MY IQ SCORE HAVE SUCH A NEGATIVE
IMPACT ON PEOPLE'S PERCEPTIONS
OF ME AS WELL AS MY PERCEPTION
OF MYSELF.
PROFESSIONALS TALKED AROUND ME
THINKING I DIDN'T UNDERSTAND.
WHILE THERE IS NOTHING SHAMEFUL
ABOUT THE IQ SCORE THEY WERE
CONVEYING TO ME I WAS A FAILURE
IN SOCIETY BECAUSE OF MY POOR
MOTOR SKILLS AND APPROXIA.
I BELIEVE RESEARCHERSES MUST
PRIORITIZE POLICIES THAT MAKE
SURE IQ TESTS ARE NOT GIVEN TO
PEOPLE WHO DO NOT HAVE ACCESS TO
RELIABLE OR EFFECTIVE
COMMUNICATION AM WE MUST
CONSTANTLY REMEMBER THAT SPEECH
IS A MOTOR FUNCTION NOT A
COGNITIVE FUNCTION.
WHEN WE USE WORDING THAT
DEGRADES, SUCH AS SEVERE, NON
COMMUNICATIVE, COMPLEX, PROFOUND
AND CHALLENGING, WE PAINTED A
PICTURE OF PEOPLE AND
INADVERTENTLY EVOKE FEAR WHETHER
OR NOT THAT IS THE INTENTION.
THIS PLAYS A ROLE IN SEGREGATING
AND DEI NOOING ACCESS TO ROBUST
COMMUNICATION.
WE NEED TO TALK ABOUT THE
SERVICES AND SUPPORTS PEOPLE
NEED AND MAY BENEFIT FROM.
IN THE LAST 18 POCKETS I
GRADUATED FROM BOSTON COLLEGE
WITH MY MASTERS IN EDUCATION AND
STARTED MY FIRST OFFICIAL JOB.
I HAVE BEEN FEATURED IN A
DOCUMENT CALLED, THIS IS NOT
ABOUT ME.
AND I COCREATED AND WAS FEATURED
IN, LISTEN, A SHORT FILM ABOUT
NON-SPEAKING AUTISTIC PEOPLE.
I SERVE ON THE BOARD OF
DIRECTORS OF THE NATIONAL CIVIL
RIGHTS ORGANIZATION
COMMUNICATION FIRST AND HAVE
KEYNOTED SEVERAL CONFERENCES.
I WAS APPOINTED BY PRESIDENT
BIDEN TO THE PRESIDENT'S
COMMITTEE FOR PEOPLE WITH
INTELLECTUAL DISABILITIES.
NONE OF THIS MEANS I DON'T NEED
AND RELY ON HIGH QUALITY SUPPORT
EACH DAY.
YET, NONE OF THESE ACTIVITIES
WOULD BE POSSIBLE IF I HADN'T
BEEN GIVEN ACCESS TO ROBUST
POLICY.
EVEN BE THOUGH I NOW HAVE ACCESS
TO -- MY VOICE STILL IS OFTEN
QUESTIONS OR DISREGARDED BY
PROFESSIONALS.
IN THE CONTEXT OF PLANNING THIS
VERY WEBINAR AS A FELLOW
COMMITTEE MEMBER, IT WAS
DIFFICULT FOR RESEARCHERS WHO
ARE EXPERTS ON PEOPLE LIKE ME,
TO MAKE SPACE FOR ME.
THIS IS WHY ACCESS TO THIS ALONE
IS NOT ENOUGH.
WHETHER YOU ARE RESEARCHERS OR
FAMILY MEMBERS, YOU MUST SUPPORT
OUR RIGHT TO COMMUNICATE ABOUT
OURSELVESES AND OUR NEEDS IN THE
WAYS THAT WORK BEST FOR US.
>>THANK YOU JORDYN FOR THOSE
COMMENTS.
I'M SO HAPPY TO BE THE LUCKY
PERSON WHO GETS TO MODERATE THIS
CONVERSATION BETWEEN JORDYN AND
GRANT.
JORDYN, I SEE A LOT OF OVERLAP
WITH SOME OF THESE EXPERIENCES
AND POINTS THAT GRANT RAISED IN
HIS COMMENTS YESTERDAY.
BUT I WANT TO FIRST PICK UP ON
THAT POINT THAT YOU HAD AT THE
END OF YOUR PRESENTATION.
YOU MENTIONED THAT, AND I WANT
TO MAKE SURE I GET THE WORDS
RIGHT.
PLANNING THIS WEBINAR AS A
FELLOW COMMITTEE MEMBER IS
DIFFICULT FOR RESEARCHERS WHO
ARE EXPERTS ON PEOPLE LIKE ME TO
MAKE SPACE FOR ME ON ZOOM.
AND THIS REMINDED ME OF A POINT
THAT LEN MADE YESTERDAY THAT THE
EXPERTS ON THIS VERY TOPIC,
MIGHT NOT HAVE MUCH IN THE WAY
OF EXPERIENCE INTERACTING WITH
AND THINKING ABOUT HOW BEST TO
INCLUDE PEOPLE THEY ARE SUPPOSED
TO BE EXPERTS ON.
LET ME START WITH A QUESTION FOR
THE BOTH OF YOU WHICH IS, WHAT
ARE SOME WAYS THAT FUTURE
WORKSHOPS, CONFERENCES, WEBINARS
AND SPACES HOSTED BY NIH AND
OTHERS, COULD BE MADE MORE
ACCESSIBLE, WELCOMING AND
INCLUSIVE FOR AUTISTIC AAC
USERS?
JORDYN DO YOU WANT TO START?
>>JORDYN ZIMMERMAN.
>>SURE.
A LOT OF AGENCIES SUCH AS NIH
PUT UP BEAUTIFUL GUIDELINES FOR
HORSTING INCLUSIVE AND
ACCESSIBLE EVENTS.
I SUGGEST PROVIDING CONTENT IN
ADVANCE AND HAVING A SLOWER
STREAM OF SPEAKING.
TO ALLOW FOR MORE THINKING AND
ENGAGEMENT DURING THE DISCUSSION
PERIOD.
BREAKS ARE ALSO A GOOD IDEA TOO.
>>YES.
SOME OF US HAVE SLIPPING OUT BY
TURNING OFF OUR CAMERAS.
GRANTER, DO YOU HAVE SOME
THOUGHTS YOU WANT TO ADD TO
ACCESSIBILITY ISSUES?
>>SORRY WE HAVE A VOLUME ISSUE.
>>GRANT BLASCO: I WILL LET
ATTITUDES AND LISTENING ARE SO
IMPORTANT.
I ONLY AGREED TO PARTICIPATE
AFTER I GOT -- WITH THE
COORDINATORS.
AND ESTABLISHED A RELATIONSHIP
HELPS.
WITHOUT THESE ACCOMMODATIONS, WE
ARE AT A DISADVANTAGE.
WE LIMIT EXPOSURE TO THE MEETING
FORMAT AND WE HAVE NOT TIME TO
DIGEST THE SCIENCE WITHOUT
MATERIALS AHEAD.
IT TAKES LONGER TO TYPE SO IT IS
HIGHLY UNLIKELY WE WILL BE ABLE
TO TIMELY WITH THE CONVERSATION.
IT CREATES STRESS WHICH CAN LEAD
TO -- WHICH CAN ENFORCE THE IDEA
WE ARE NOT EQUIPPED TO
PARTICIPATE.
IF WE HAVE THE OPPORTUNITY TO
PLAN WELL, WE WOULD BE FINE.
>>YES, THANK YOU FOR THAT.
I MEAN, ONE OF THE THINGS THAT
WAS BROUGHT UP YESTERDAY OF
COURSE IS THAT KIND OF
ACCOMMODATIONS THAT PEOPLE DEAL
WITH PROBABLY WOULD BE HELPFUL
TO ALL OF US TOO, MATERIALS IN
ADVANCE, TAKING A BREAK IN A
4-HOUR CONVERSATION.
>>ONE THING TO THAT AND SAY I
WORK SO HARD TO BE SEEN AS --
AND I APPRECIATE THE TIME WE
HAVE BEEN GIVEN.
I WOULD ADD ONE THING TO THAT
AND SAY I
GIVEN.
>>THANKS, GRANT.
I'M GOING SKIP TO A QUESTION
STILL IN THE ACCESSIBILITY KIND
OF FRAME.
MY SENSE FOR MY CONVERSATIONS
WITH THE BOTH OF YOU AND SOME OF
THE THINGS YOU SHARED YESTERDAY
AND TODAY IS THAT PEOPLE MAY NOT
OR DO NOT, CANNOT, REALLY
APPRECIATE THE FACT THAT IN
ALMOST EVERY SETTING YOU FIND
YOURSELF IN, PARTICIPATION IS A
CHALLENGE FOR SOMEBODY WHO
COMMUNICATES USING AAC OR
SOMEBODY WHO DOESN'T YET HAVE A
WAY TO COMMUNICATE.
BOTH OF YOU HAVE SHARED THE
TRAUMA THAT LARK OF ACCESS TO
EFFECTIVE COMMUNICATION AND LACK
OF UNDERSTANDING BY, OF WHAT IS
NEEDED FOR SOMEBODY TO BE ABLE
TO COMMUNICATE, EFFECTIVELY,
CAUSES.
SO GRANT, YOU SAID YESTERDAY, IF
YOUR TRAUMA IS AROUND YOUR DAILY
INABILITY TO COMMUNICATE
COMBINED WITH ADD ATTITUDINAL
AND SYSTEMIC BARRIERS, THE
LIKELIHOOD OF BEING TRIGGERED
SAID HIGH.
WHICH TAKES A ENORMOUS TOLL ON
YOUR PHYSICAL, EMOTIONAL AND
MENTAL HEALTH.
AND JORDYN YOU MENTION THE YOUR
REMARKS IN YOUR DOCUMENTARY
ABOUT YOU THAT DESCRIBED SOME OF
THESE ISSUES THAT YOU HAVE THAT
IS LINKED FOR THE AUDIENCE
MEMBERS AND THE SPEAKER AGENDA
AT THE BOTTOM.
I WONDER IF IT'S NOT TOO
PERSONAL A QUESTION, MAYBE IF
YOU EACH COULD SHARE AN EXAMPLE
OR STORY TO ILLUSTRATE JUST HOW
SIGNIFICANT THIS ISSUE IS.
GRANT, DO YOU WANT TO START?
>>A PLASMODUIM FALCIPARUM:
SURE, I HEARD A ELEC BEATURE
THAT TALKED ABOUT NAVIGATION.
I EXPLAINED THE DRIVE.
SORRY THE DEAL WITH DAYS PARITY
OF MY PERCEIVED OYST IDENTITY IN
DIFFERENT SPACES.
SKILLS TO REMAIN FLEXIBLE AND
REGULATED IN THE FACE OF
CONSTANT - AFTERNOON EXTENSIVE
AS YOU MIGHT IMAGINE.
FOR INSTANCE I WASES IN IAP
MEETINGS AS A METAL SCHOOL AGED
STUDENT WHERE ADULTS MIGHT BE
THERE TO TALK ABOUT MY DEFICITS.
THE PRESSURE WAS SO GREAT.
ONLY AFTER THEY WERE SATISFIED
WOULD I GET THAT GENERAL
EDUCATION.
NOW, I CAN NAVIGATE A METING
WITH A PROFESSOR WHERE I CAN
COME ACROSS AS A CREDIBLE
COLLEGE STUDENT.
THAT HELPS ME FEEL NORMAL EACH
THOUGH SUCCESSFUL MEETING TAKES
SO MUCH STAMINA AND FOCUS.
LATER I CAN WALK INTO A HOSPITAL
WHERE I AM OFFERED A HIGH-FIVE
BY MEDICAL ASSISTANT WHO DID NOT
READ MY CHART AND THEN
INSTANTLY -- I CAN WALK INTO A
RESTAURANT AND MOVE SLIGHTLY
DIFFERENTLY THAN OTHERS AND THE
RESULT WILL BE THAT I'M GIVEN A
PLASTIC CUP WHILE OTHER PEOPLE
GET GLASSWARE.
THE POINT IS I CANNOT CONTROL
OTHER PEOPLE'S IGNORANCE BUT I
STILL NEED TO DEAL WITH IT DAILY
DAILY.
>>RIGHT.
AND JORDYN?
YOU HAVE AN EXPERIENCE YOU'D
LIKE TO SHARE?
>>JORDYN ZIMMERMAN: YES, A
LOT OF THIS IS ILLUSTRATED IN
THE FILM, HOW FAR, I CAN
DEFINITELY EXPAND MORE --
HEREAFTER.
THE DAILY -- GRANT DESCRIBES
VERY TRUE.
I GOT ACCESS TO ROBUST POLICY
WHEN I WAS 18 YEARS OLD.
UNFORTUNATELY, MY SPECIAL
EDUCATION TEACHER USED MY iPAD
TO TYPE IN CRUDE JOKES ABOUT MY
APPEARANCE AND THEN WOULD PLAY
THEM AS IF THEY WERE MY WORDS.
WHEN I WENT TO COLLEGE, MY WORTH
WAS CONSTANTLY QUESTIONED.
ALMOST DAILY, I WAS ASKED IF I
WAS REALLY A STUDENT ON CAMPUS.
EVEN NOW ON SOME DAYS, THE DAILY
BUILDUP BECOMES SO MUCH I'M
UNABLE TO STAY REGULATED IN ON
THOSE DAYS IT CAN BE DIFFICULT
TO COMMUNICATE MY NEEDS.
I GET INTO A SET WHERE I BANG MY
HEAD UNTIL IT'S BRUISED AND CUT.
I KNOW ON THOSE DAYS, PEOPLE ARE
QUESTIONING MY WORTH EVEN MORE.
>>ONE OF THE THINGS I HAVE
LATER AS A QUESTION FOR YOU BOTH
HAS TO DO WITH WAYS IN WHICH WE
CAN, AS RESEARCHERS AND AS A
COMMUNITY, HELP TO POSSIBLY
REDUCE SOME OF THAT TRAUMA.
BUT BEFORE WE GET TO THAT POINT,
THESE ARE REALLY SERIOUS ISSUES
AND I KNOW THAT YOU BOTH ARE IN
THE PAST HAD TO DEAL WITH THESE
SERIOUS EFFECTS THESE HAD ON
YOUR PHYSICAL, MEANTAL AND
EMOTIONAL HEALTH.
BUT YOU ALSO SHARED WITH ME
HILARIOUS EXAMPLES IN RETROSPECT
OF WHERE PEOPLE DON'T KNOW HOW
TO PROCESS YOU OR THE WAY THAT
YOU COMMUNICATE.
NOW IN RETROSPECT YOU CAN LAUGH
ABOUT THEIR IG NOWHERES.
I WONDER IF YOU CAN SHARE AN
EXAMPLE OF THAT.
GRANT WHY DON'T YOU START?
>>GRANT BLASCO: I THINK I CAN
PUT IT THE FIRST QUESTION.
[ TYPING ]
I THINK I CAN PREDICT THE FIRST
QUESTION I WILL GET AFTER ANY
PRESENTATION.
I KNOW WHAT ARE YOU USING?
>>SO, AFTER YOU'RE AMAZING
CONTENT THE FIRST QUESTION IS,
WHAT APP ARE YOU USING?
>>THE TRUTH IS I DON'T HEAR
ABOUT THE TECHNOLOGY.
[ TYPING ]
THE TRUTH IS I DON'T CARE ABOUT
THE TECHNOLOGY.
THERE IS TOO MUCH TO WORRY ABOUT
FOR SUCCESSFUL COMMUNICATION.
>>I'M GOING TO MOVE ON TO
ANOTHER QUESTION IN THE INTEREST
OF TIME.
BEATING OF YOU WORK TIRELESSLY
IN SPACES TO ADVOCATE ON BEHALF
OF NON-SPEAKING AUTISTIC FOLKS.
INCLUDING THOSE WHO DON'T YET
HAVE A CONVENTIONAL LANGUAGE
BASE WAY TO COMMUNICATE
EFFECTIVELY.
JORDYN, YOU MENTIONED THAT YOU
HAD A DIRECTOR OF PROFESSIONAL
DEVELOPMENT AND YOU'RE CHAIR OF
THE BOARD AT COMMUNICATION
FIRST.
AND GRANT IS ON THE
COMMUNICATION FIRST ADVISORY
BOARD AND A NUMBER OF NYU'S
ADVISORY BOARD FOR PROGRAM FOR
INCLUSION OF NEURODIVERSITY
EDUCATION.
THIS IS A HARD QUESTION.
BUT WHAT DO YOU SAY TO FOLKS WHO
MAY FEEL LIKE THE FACT THAT YOU
NOW HAVE ACCESS TO COMMUNICATION
AND YOU CAN ADVOCATE ON BEHALF
OF YOURSELF AND OTHERS, MEANS
THAT YOU DON'T UNDERSTAND THE
CHALLENGES THAT INDIVIDUALS WHO
STILL DON'T HAVE ACCESS TO
COMMUNICATION HAVE.
THAT MAYBE YOU DON'T OR HAVE
NEVER HAD SIGNIFICANT
CHALLENGES; ALLUDED TO SOME OF
THESE EARLIER.
DO YOU WANT TO EXPAND ON ANY OF
THEM?
[ TYPING ]
>>SURE.
IN THE DOCUMENTARY THAT WAS
PREVIOUSLY MENTIONED, THERE IS
IT A PROFESSIONAL THAT STARTS
OFF BY TALKERRING ABOUT HOW I
WAS ONE OF THE MOST QUOTE,
CHANNELING, UNQUOTE STUDENTS SHE
EVER WORKED.
AS SHARED DURING THE DISCUSSION
YESTERDAY, AUTISM IS A
DEVELOPMENTAL DISABILITY.
HOW I MAY PRESENT IN THIS MOMENT
OR HOW I PRESENT 10 YEARS AGO
DOES NOT DISMISS MY RIGHT TO
AUTONOMY THEN OR THE SUPPORT I
NEED TODAY.
WE MUST ALL WORK TOGETHER.
>>THANK YOU.
THAT'S A REALLY -- THE
DOCUMENTARY IS A REALLY POWERFUL
ONE.
WE ARE REALLY RUNNING OUT OF
TIME AND AS WE TALKED ABOUT
BEFORE, I WISH EVERYBODY COULD
HAVE BEEN A PART OF THE HOURS OF
CONVERSATIONS WE HAVE BEEN ABLE
TO HAVE OVER THE LAST COUPLE OF
WEEKS WITH CONNIE TOO.
SO I JUST WANT TO GIVE US MAYBE
ONE OR TWO MINUTES SO BOTH GRANT
AND JORDYN, YOU'LL HAVE TO KEEP
IT QUICK, BUT THE LAST QUESTION
JUST TO CLOSE THE LOOP REGARDING
COMMUNICATION INTERVENTION,
SPECIFICALLY, WHAT IS ONE
MESSAGE YOU WOULD LIKE TO LEAVE
THIS AUDIENCE OF THE NIDCD FOLKS
AND THE FOLKS LISTENING TO THE
WEBCAST WITH AS THEY ATTEMPT TO
SET THE AGENDA FOR THE NEXT 10
YEARS OF RESEARCH WITH
NON-SPEAKING OR MINIMALLY VERBAL
FOLKS.
GRANT DO YOU WANT TO START?
[ TYPING ]
I WANT TO SHARE A RESPONSE.
EVEN NOW I STRUGGLE TO GET OUT
EVERYTHING I WANT TO SAY AND I
PAIN TO GET OUT FOR OTHERS
BECAUSE I'M AWARE THE FAMILIES
ARE IN PAIN BUT THAT ALSO MAKES
ME A TARGET.
I HAVE SO MUCH TO LOSE SO WHY DO
I DO THIS?
SOME DAYS I DON'T KNOW.
UNDERSTAND MY FEELINGS OF BEING
ALONE WITH MY LACK OF
UNDERSTANDING OF MY DIAGNOSIS
AND MIGRAINE HEADACHES AND
INVOLVEMENTITTING AND SELF
INJURY.
I HAVE SEIZURES AND I GO DAYS
WITHOUT SLEEP DUE TO STRESS.
BEFORE I COULD COMMUNICATE, I
COPED MY -- GREAT AMOUNTS OF
NUDES IN THE PANTRY AND FRIDGE
DOWN DRAINS AND FLUSHED MOM'S
FAVORITE NECKLACE DOWN THE
TOILET.
I COULD GO ON.
THE MARK OF DIFFERENCE WAS BEING
EDUCATED ABOUT HOW AUTISM CAN
IMPACT SOMEONE AND LISTENING TO
OLDER AUTISTIC PEOPLE EXPLAIN
HOW THEY COPE.
I KNOW WE ARE ALL DIFFERENT.
WHEN I HEAR PARENTS EXPLAIN
THEIR CONCERN USED KIDS WORDS
OVER AND OVER REMINDED ME I DID
THE SAME THINGS BEFORE I HAD THE
INFORMATION THAT PUT ME IN A
PLACE OF SEEING LOGICAL.
I DON'T WANT ANYONE TO THINK I'M
SHAMING PARENTS.
BUT, I HAVE EXPERIENCED PAIN
TOO.
I HAVE FRIENDS WHO CANNOT STAND
SO THEIR HOMES WERE DARK AND I
WENT THROUGH A STAGE WHERE I HAD
TO UNPLUG EVERY ELECTRICAL
APPLIANCE AND LAUGH BECAUSE I
WAS HEAR THE BUZZING.
MY HOPE IS TO HELP OTHERS SO
MAYBE ONE PERSON CAN TALK ABOUT
AUTISM WITH A LOVED ONE AND FIND
SOME PEACE.
THAT IS MY HOPE BUT I KNOW I AM
NOT THE EXPERT OF PEOPLE I HAVE
NEVER MET.
JUST LIKE PEOPLE WHO HAVE NEVER
SPENT A DAY WITH ME DO NOT
UNDERSTAND HOW I OVERCOME SOME
ISSUES BUT I'M STILL WORKING ON
MANY TOO.
WE SHOULD HAVE EMP THY THEE FOR
EACH OTHER AND TRADE IDEAS
BECAUSE THIS STUFF IS NOT EASY
FOR ANY OF US.
>>WOW, THANK YOU, GRANT.
JORDYN, LAST COMMENT FOR THE
GROUP.
AND OF COURSE BOTH OF YOU WILL
HAVE THE OPPORTUNITY TO
PARTICIPATE IN THE DISCUSSION AS
WE ALL WILL; WHICH IS HAPPENING
SHORTLY.
>>DYNAMIC HUMANS.
COME OUT OF YOUR LABS.
WE CAN ATAFT TO FULLNESS AS
PEOPLE.
-- ATTEST TO OUR FULLNESS AS
PEOPLE.
>>THANK YOU BOTH FOR A
FANTASTIC END OF THE FULL
DISCUSSION OF OUR -- OR
PRESENTATIONS AND I'LL TURN BACK
OVER TO CONY AND HELEN AND
JUDITH FOR THE FINAL DISCUSSION.
THANK YOU AGAIN GRANT AND JORDYN
JORDYN.
>>CONNIE KASARI: I CAN
DEFINITELY ATOAST YOUR FULLNESS,
JORDYN.
I WILL SAY I SPENT A FEW HOURS
WITH JORDYN AND WITH GRANT AND
WITH VICK RAM OVER THE LAST FEW
WEEKS.
AND I WOULD SAY, AND YOU CAN
CORRECT ME IF I'M WRONG, BUT I
THINK SOME OF THE QUESTIONS YOU
COULD PREPARE BEFOREHAND, RIGHT,
GRANT AND JORDYN?
SO THAT'S WHY WE HAD THESE LONG
STRINGS OF PRODUCTION.
AND IN OTHER TIMES YOU WERE
RESPONDING IN REALTIME.
AND I KNOW THAT WHEN WE HAD OUR
CONVERSATIONS, IT WAS ALL IN
REALTIME.
SO I CAN DEFINITELY ATTEST TO
NOT ONLY THE FULLNESS OF YOU AS
HUMANS BUT ALSO YOUR SENSE OF
HUMOR.
YOU BOTH ARE VERY, VERY -- YOU
BOTH HAVE A GREAT SENSE OF
HUMOR.
AND I REALLY APPRECIATED THAT.
AND YOU ALSO KNOW THAT I'VE
WORKED MOSTLY WITH MINIMALLY
VERBAL CHILDREN WHO GROW UP.
AND WE DON'T ALWAYS AS
RESEARCHERS GET TO FOLLOW PEOPLE
UP INTO ADULTHOOD.
IT'S A REAL DISADVANTAGE TO US
TO SEE HOW SOME OF OUR MINIMALLY
VERBAL YOUNG CHILDREN GROW UP TO
BE ADULTS.
I HAVE A COUPLE OF KIDS THAT
WERE IN STUDIES THAT ARE NOW IN
COLLEGE, LIKE YOU GUYS.
AND OTHERS THAT HAVE REALLY
SIGNIFICANT NEEDS.
AND AROUND THE CLOCK THEY NEED
CARE.
SO THERE IS THAT HETEROGENEITY.
AND I THINK WE HAD A REALLY RICH
DISCUSSION FROM BOTH OUR PARENTS
AND OUR INDIVIDUALS WHO ARE
INDEPENDENT TYPERS.
AND YOU GUYS, I HAVE TO SAY,
YOU'RE AMAZING AND I AM IN AWE
OF YOUR COURAGE AND EFFORTFUL
CONTROL THAT IT TAKES TO DO WHAT
YOU DO EVERY DAY.
AND IN FACT, A QUESTION I HAVE
FOR YOU IS, MY GOODNESS, HOW DO
YOU -- WHAT IS YOUR WORKDAY
LIKE, JORDYN?
I MEAN WE ARE SITTING HERE IN
THIS ZOOM CONTEXT WITH NO BREAKS
FOR 4 HOURS AND I'M EXHAUSTED.
I HAVE TAKE A NAP AFTERWARDS.
SO I CAN'T IMAGINE DOG THIS KIND
OF WORK THAT YOU DO -- DOING
THIS KIND OF WORK THAT YOU DO
AND WORKING A FULL DAY.
I DON'T THINK I CAN DO IT.
HOW DOES THAT WORK FEDERAL YOU?
HOW DOES THAT WORK FOR YOU?
>>JORDYN YOU'RE MUTEED.
>>I THINK SHE IS STILL MUTED.
THERE WE GO.
>>I DON'T HAVE FOUR HOUR
MEETINGS.
EVEN YOUR DOG WAS BARKING IN
DISAGREEMENT ABOUT THIS
YESTERDAY.
[ LAUGHS ]
>>LIKE I SAID, THEY HAVE A
GREAT SENSE OF HUMOR!
YES, IN FACT JORDYN DID ASK ME
WHAT KIND OF DOG I HAD BECAUSE
SOMEHOW SYBIL POPPED UP INTO THE
VIEW.
AND THEN GRANT, I KNOW THAT
YOU'RE A COLLEGE STUDENT AND YOU
KNOW, I'M TEACHING AN
UNDERGRADUATE CLASS RIGHT NOW
THAT STARTS AT 8 A.M. AND HAS TO
BE IN-PERSON.
AND I DON'T TAKE ATTENDANCE.
SO FIRST DAY EVERYONE WAS THERE.
OVER 100 STUDENTS.
SECOND TIME, HALF BECAUSE 8 A.M.
IS WAY TOO EARLY.
SO MY QUESTION TO YOU IS, DO YOU
HAVE TO GO TO CLASS IN-PERSON OR
ARE YOU ON LINE?
ONLINE IS SO MUCH EASIER BUT I
DON'T KNOW WHAT YOU DO.
[ TYPING ]
I DO BOTH AND I PREFER IN-PERSON
BECAUSE I WANT TO BE A PART OF
THE ACTIVITIES OF REGULAR
STUDENTS.
>>THAT'S GREAT.
YOU WOULD GET AN A IN MY CLASS.
I CAN SEE YOU DOING GREAT AND I
WOULD LOVE TO HAVE YOU.
LET'S SEE, DO WE HAVE ANY
QUESTIONS FROM JUDITH FROM OUR
PARTICIPANTS BEFORE WE MOVE
TO -- NEXT SESSION WHERE I'M
HOPING THAT JEERED IN AND GRANT
CAN PARTICIPATE -- OR MAYBE YOU
GUYS HAVE SOMETHING YOU WANT TO
ADD, JORDYN AND GRANT?
YES, THEY DO.
>>GRANT BLASCO: NO THANKS.
>>JORDYN: ME EITHER.
>>CONNIE KASARI: OKAY, WELL
GREAT.
WHAT WE WERE GOING TO DO --
HELEN HAS SOMETHING.
>>A FLORIDA'S FLORIDA'S: I WANT
TO MAKE A COMMENT HERE: HELEN
TAGER-FLUSBERG -- I REALLY
ADMIRE YOUR COURAGE JORDYN AND
GRANT.
IT ISN'T EASY TO PUT YOURSELF
OUT THERE THE WAY YOU DO.
YOU HAVE IN THE PAST AND YOU ARE
HERE AND I REALLY APPRECIATE
THAT.
I ALSO WANT TO SAY, OBVIOUSLY
YOUR LANGUAGE AND COMMUNICATION
SKILLS ARE WHAT WE ASPIRE TO FOR
THE MINIMALLY VERBAL AND
NON-SPEAKING POPULATION.
YOU ARE ABLE TO COMMUNICATE.
AND WE KNOW THAT FOR MOST
INDIVIDUALS, THEY ARE NOT GOING
TO BE ABLE TO REACH YOUR
ASPIRATIONAL STATUS.
AT THE SAME TIME, I THINK WHAT I
HAVE TAKEN AWAY FROM THIS
AFTERNOON IS, YES YOU HAVE THAT
CAPACITY BUT LOOK AT HOW HARD IT
IS.
IT IS STILL SUCH A CHALLENGE.
AND I THINK YESTERDAY WE TALKED
ABOUT THE NEEDS TO HAVE
TECHNOLOGIES THAT WOULD CHANGE
SO MANY OF THE FEATURES OF YOUR
COMMUNICATION, TO MAKE IT
FASTER, TO MAKE IT MORE
EXPRESSIVE AND MORE, YES YOUR
FIRST VOICE, BUT LET IT BE YOUR
OWN VOICE.
AND HOW ARE WE GOING TO BE ABLE
TO GET THERE?
SO I THINK YOU HAVE HIGHLIGHTED
BOTH WHAT WE CAN ASPIRE TO AND
ALSO WHAT WE NEED TO BE DOING AS
A FIELD TO IN FACT, REALLY ALLOW
YOU TO COMMUNICATE IN WAYS THAT
I KNOW YOU WISH TO DO.
AND THE STRESS AND THE TRAUMA
THAT YOU TALK ABOUT, I THINK
IT'S VERY EVIDENT TO ME TODAY,
WATCHING YOU, THAT LISTENING TO
YOU, WHY EACH THOUGH YOU CAN
COMMUNICATE, THE STRESS IS JUST
STILL SO ENORMOUS.
IT MUST BE COMPOUNDED IN
EVERYDAY LIFE.
SO I REALLY JUST WANT TO THANK
YOU FOR SHOWING ME AN ASPECT OF
WHERE WE WANT TO BE THAT I
HADN'T REALLY THOUGHT SO MUCH
ABOUT BEFOREHAND.
>>JUDITH COOPER: THANK YOU
CONNIE AND JORDYN AND GRANT.
WHAT A WONDERFUL PART OF THE
AFTERNOON.
SO, WE ARE MOVING NOW INTO WHAT
IS NEXT, NEXT STEPS.
DO NOT EXPECT THAT CONNIE AND
HELEN AND I ARE GOING TO DO A
SUMMARY OF WHAT WE HAVE LEARNED
OVER THESE TWO DAYS.
I WILL SAY THAT WHAT WE WANT TO
HEAR FROM YOU IS, WE HAVE HEARD
A COUPLE OF THEMES, OKAY?
PARTICIPATORY RESEARCH.
A LOT OF PEOPLE TALKED ABOUT
THAT.
TECHNOLOGY, CHANGES IN
TECHNOLOGY.
NON-TECHNOLOGICAL APPROACHES FOR
MINIMALLY VERBAL.
AND THEN THE HETEROGENEITY
ISSUE.
RECOGNIZING THAT WE ARE NOT THE
MONLITHE THAT JOHN MENTIONED
YESTERDAY.
SO I'M GOING TO ASK EVERYBODY TO
TURN THEIR CAM RAGS ON SO WE CAN
SEE EVERYONE -- CAMERAS ON SO WE
CAN SEE EVERYONE TO RAISE THEIR
HANDS TO MAKE COMMENTS AND
SUGGESTIONS ABOUT OTHER THEMES
THAT YOU WOULD LIKE THOSE OF US
WHO ARE LISTENING TO PAY
ATTENTION.
WE HAVE GOT BOTH YOU FOLKS ON
THE SCREEN AND THEN THOSE ON THE
WEBINAR WHO CAN AND HAVE BEEN
SENDING FORTH COMMENTS.
SO I THINK WE'LL -- CONNIE AND
HELEN AND I WILL JUST SHARE
CALLING ON FOLKS BUT WE'LL WAIT
TO SEE WHO RAISES THEIR HAND.
>>I ASSUMED WE WERE GOING
ALPHABETICALLY.
SO I WANT TO JUST MAYBE MAKE TWO
COMMENTS.
ONE IS IN REFERENCE TO LARRY'S
EXCELLENT PRESENTATION ABOUT THE
NEED FOR MULTIMODAL
INTERVENTIONS.
OR MULTICOMPONENT INTERVENTIONS.
AND I WANT TO MENTION A COUPLE
OF OTHER BENEFITS BECAUSE I
THINK THIS IS THE WAY TO GO IN
THE FUTURE.
RECOGNIZING THAT THESE ARE
EXPENSIVE INTERVENTIONS TO DO
BUT I THINK THEY REALLY NEED TO
BE DONE.
IN MY OWN FIELD, WE HAVE DONE A
MULTIMODAL INTERVENTIONS FOR
INDIVIDUALS WHO HAVE FRAGILE X
SYNDROME AS ONE EXAMPLE AND WE
COMBINED MEDICATIONS WITH PARENT
IMPLEMENTED INTERVENTIONS.
THE TWO THINGS I WANT TO ADD TO
LARRY'S EXCELLENT POINTS ARE,
THAT THERE REALLY IS A CHALLENGE
IN THE TYPICAL DRUG TRIAL WHERE
YOU HAVE A PLACEBO CONDITION.
SO FAMILIES COME TO THIS AND NO
ONE WANTS TO BE IN THE PLACEBO.
RIGHT?
EVERYONE WANTS TO BENEFIT FROM
THE MEDICATION.
AND I THINK THAT THERE IS A COST
TO FAMILIES IF THEY DON'T GET
ANY TREATMENT.
THAT IS IN TERMS OF TIME,
EFFORT, HOPE AS WELL AS THE FACT
THAT OFTEN THEY HAVE TO STOP
OTHER MEDICATIONS AND THINGS
LIKE THAT.
AND SO I THINK HAVING AN
ALTERNATIVE TO THE TRADITIONAL
PLACEBO BEING TO GET A
BEHAVIORAL INTERVENTION WITHOUT
THE MEDICATION, IS REALLY
BENEFICIAL AND I WOULD LIKE TO
SEE US DO THAT, RECOGNIZING IT
WILL COST MORE TO FUND THAT
THROUGH THE NIH.
SO THEN THE SECOND COMMENT
AGAIN, MAYBE THIS IS PARTICULAR
TO THE FRAGILE X FIELD.
ONE OF THE CHALLENGES IN A LOT
OF THE MEDICATION TRIALS IS THEY
DON'T REALLY KNOW WHICH OUTCOME
MEASURE TO PICK.
WE THINK WILL WE WILL HAVE
POSITIVE IMPACT ON COGNITION SO
WE DO OUR BEST TO PICK THAT ONE
PRIMARY OUTCOME MEASURE BUT IT
IS OFTEN NOT WELL MOTIVATED.
IF YOU PAIR A PARTICULAR KIND OF
INTERVENTION WITH THAT, SORE
PAIR A LANGUAGE INTERVENTION
WITH THE MEDICATION, THEN HAVE A
LANGUAGE OUTCOME MEASURE.
IF YOU DON'T SEE ANY BENEFIT
THERE YOU'RE NOT REALLY GOING TO
SEE A BENEFIT IN THE MEDICATION.
SO I JUST THINK THERE ARE LOTS
OF WAYS TO REALLY BUILD ON THIS
MULTIMODAL THING AND MAYBE THE
LAST POINT I'LL SAY ABOUT THAT
IS WE JUST DID A BIG -- WE HAVE
DONE SEVERAL STUDIES WHERE WE
FOUND THAT THE NO EFFICACY OF
THE MEDICATION BUT THE
BEHAVIORAL INTERVENTION WORKED
WELL AND THEN WHAT A LOT OF
PEOPLE TAKE FROM THAT IS WE NEED
TO FOCUS ON MORE MEDICATIONS.
THE FLIP SIDE OF THAT IS MAYBE
WE NEED TO FOCUS ON BEHAVIORAL
THERAPIES AND OTHER KINDS OF
EDUCATIONAL INTERVENTIONS AND
NOT PUT ALL OF OUR EGGS IN THE
MEDICATION BASKET.
THAT'S MY SOAPBOX BUT THANK YOU.
>>JUDITH COOPER: THANK YOU,
LEN, JANICE?
>>JANICE LIGHT: I WANTED TO USE
MY TIME TO ASK A QUESTION.
JORDYN, I DON'T KNOW IF YOU'RE
STILL THERE, AND GRANT, BUT I
DON'T THINK YOU, AT LEAST
JORDYN, GOT A CHANCE TO ANSWER
THE QUESTION WE ALL HAVE BEEN
ASKED.
WHAT IS THE BIGGEST UNMET NEED,
THE GREATEST RESEARCH PRIORITY?
I THINK IT WOULD BE REALLY
HELPFUL FOR US TO HEAR YOUR
PERSPECTIVE ON THAT FROM YOUR
LIVED EXPERIENCES.
AND GRANT, YOU AS WELL.
I KNOW YOU HAD A FEW MINUTES AT
THE BEGINNING OF THE SESSION BUT
I'D BE REALLY INTERESTED IN
HEARING YOUR VIEWPOINTS ON THE
RESEARCH PRIORITIES.
>>JUDITH COOPER: I'M LOOKING
AND JORDYN IS ON AND GRANT IS
ON.
SO MAYBE WE'LL LET JORDYN GO
FIRST.
[ TYPING ]
L. ]
[ TYPING ]
I THINK INCLUSION IS AN
INTERVENTION BUT MAYBE FULLY
PLANNED INCLUSION.
IT HAS TO BE DONE RIGHT AND
THERE IS SAY LOT TO THIS.
SEGREGATION IS NOTED AND IF WHY
ARE GOING TO BE SERIOUS ABOUT
TRAUMA, WE NEED TO THINK LONG
AND HARD ABOUT THE HARM THAT
HAPPENS IN SEGREGATED SPACES,
PLANNED WITH UNRELIABLE
COMMUNICATION.
>>JUDITH COOPER: THANK YOU,
JORDYN.
GRANT, WOULD YOU LIKE TO -- ARE
YOU READY?
OR WE CAN WAIT FOR YOU.
IT LOOKS LIKE YOU ARE PREPARING
SO WE'LL WAIT UNTIL YOU'RE
READY.
ACCESSIBILITIESY IN SCHOOLS IS A
HUGE NEED.
-- ACCESSIBILITY -- I ECHO WHAT
JORDYN IS SAYING.
DR. LIGHT I'M A FAN.
I WANT TO STUDY ETHNIC GRAPHICS
AND SO MANY ASPECTS OF HOW ACC
USERS MANAGE RESEARCH AND
ACCESSIBILITY IN SCHOOLS IS A
HUGE NEED.
>>JUDITH COOPER: THANK YOU,
GRANT AND JORDYN.
OKAY, SO LET'S SEE, NEXT I THINK
CATHY?
>>HI, EVERYBODY.
I THINK ONE OF THE THINGS I
WANTED TO SECOND AND THIS IS
PROBABLY MOSTLY DIRECTED TOWARDS
JUDITH.
BUT I THINK ONE OF THE ISSUES
THAT WAS BROUGHT UP, IS THERE
ANY WAY TO HAVE A SYSTEM THAT IS
LIKE CANCER CENTERS, FOR
EXAMPLE?
I THINK IT CAN'T JUST BE THROUGH
MEDICINE BECAUSE I THINK AS
JORDYN AND GRANT JUST SAID, A
LOT OF ISSUES DO ARISE THROUGH
SCHOOL.
BUT IS THERE A WAY TOO HAVE
STANDARD PROTOCOLS THAT COULD BE
SHARED WHERE PEOPLE THAT ARE
CAPABLE OF CARRYING THESE OUT
AGREE TO DO THIS.
AND THEN ARE APPLIED TO
DIFFERENT PEOPLE WHO NEED
DIFFERENT THINGS.
I THINK ONE OF THE THINGS I WAS
STRUCK BY AND THIS IS PARTLY
SAYING TO DANNY AND CONNIE.
CONNIE HEARD ME SAY THIS BEFORE.
BUT I THINK THE SMART DESIGNS
ARE WONDERFUL EXCEPT SO FAR, I
WANT TO KNOW WHO RESPONDED AT
THE START AND WHO DIDN'T RESPOND
AT THE START.
NOT JUST WHAT CAUSED RESPONSES.
AND WITHOUT HUGE NUMBERS WE JUST
CAN'T FIGURE THAT OUT.
AND ALSO JUST ADDRESSING THE
HUGE HETEROGENEITY THAT WE SEE.
SO IS THERE A WAY TO COORDINATE
EFFORTS ACROSS SITES?
AND FRAGILE X HAS DONE THIS.
I THINK MORE THAN WE SEE IN
TYPICAL AUTISM, BUT I THINK IT'S
A HUGE EFFORT.
BUT I THINK WE ARE ALL TRYING.
AND IF WE COULD WORK TOGETHER,
AND FIGURE OUT WAYS TO BE MORE
INDIVIDUALIZED BUT TO BE SURE WE
WERE GETTING ENOUGH PEOPLE IN
DIFFERENT GROUPS THAT WE COULD
ACTUALLY SEE WHAT WORKS FOR WHOM
AND WHEN, IS ALSO THE OTHER
ISSUE.
BECAUSE I THINK -- I MEAN,
LOOKING AT JORDYN AND GRANT, YOU
GUYS ARE YOUNG ADULTS.
WHAT WOULD BE DIFFERENT ABOUT
DOING - WHAT WOULD WE DO WITH
YOU AT 3, WHICH WOULD BE QUITE
DIFFERENT TO HELP YOU AT 3 THAN
AT 6?
OR AT VARIOUS AGES.
SO I JUST WANT TO PUT IN A PLEA
FOR REALLY HIGHER ORDER SYSTEMS
THINKING ABOUT HOW DO WE ADDRESS
THE NEED FOR LARGER SAMPLES
ACROSS HETEROGENEITY.
SO NOT THE SAME THING FOR
EVERYBODY.
AND WAYS TO KEEP TRACK OF THAT.
AND ALSO BACK TO LEN'S POINT,
NOT THAT YOU HAVE A CONTROL OF
YOU GET NOTHING VERSUS YOU GET
THE THING THAT I MOST INVESTED
IN.
WE HAVE REASONABLE OFFERS OF
THINGS TO EVERYBODY.
>>JUDITH COOPER: THANK YOU,
CATHY.
JOE.
>>YES, THANKS.
I'M JOE.
I'M A U.K.-BASED RESEARCHER AND
AMAZING TOO BE HERE.
SO INSPIRING.
I FEEL LIKE A NEED A FEW DAYS TO
DIGEST IT ALL NOW.
I WANTED TO SAY I'M INTERESTED,
LIKE MOST OF YOU, IN THE
HETEROGENEITY OF TRAJECTORIES IN
THIS POPULATION.
AND THE NEED AS MANY PEOPLE
BROUGHT UP, FOR HAVING A LONG
TERM OBSERVATIONS OF PEOPLE SO
WE CAN KNOW WHO CHANGES IN WHAT
WAY AND MAYBE WHAT ARE THE
CORRELATES OF THAT.
AND THIS IS AT THE FRONT OF MY
MIND BECAUSE I'M PLANNING A LONG
TERM OBSERVATIONAL STUDY AT THE
MOMENT AND DISCUSSING MEASURES.
ONE OF THE QUESTIONS I HAVE AND
I DON'T KNOW IF ANYONE CAN SHED
ANY LIGHT ON THIS FOR ME, BUT IF
I'M LOOKING AT A POPULATION
STUDY WHERE EVERYONE STARTS
MINIMALLY VERBAL OR NON-SPEAKING
BUT THEY MAY CHANGE IN DIFFERENT
WAYS IN TERMS OF OF THEIR
COMMUNICATION SKILLS OVER THE
PERIOD OF THE STUDY.
IT'S HARD TO PUT MY FINGER ON A
MEASURE THAT HAS ENOUGH
SENSITIVITY TO COVER THE WHOLE
RANGE OF POSSIBLE COMMUNICATE
OUTCOMES.
SO SOMETHING THAT MIGHT BE
REALLY GOOD IN AN INTERVENTION
STUDY WHERE WE SEE DIFFERENT
AMOUNTED OF CHANGE IN A SHORT
PERIOD, IT MIGHT NOT -- IT MIGHT
HAVE BIG CEALING EFFECTS FOR
THOSE WHO GO ON TO ACQUIRE
PHRASE SPEECH AND MORE LANGUAGE.
SO I JUST WAS WONDERING HOW
PEOPLE THOUGHT ABOUT THAT AND IF
MAYBE THE SOLUTION IS YOU JUST
HAVE TO HAVE LOTS OF DIFFERENT
MEASURES.
THAT'S SOMETHING I'M JUST
PONDERING AT THE MOMENT.
>>JUDITH COOPER: I DON'T KNOW
IF WE OUGHT TO OPEN IT UP TO
RESPOND BECAUSE WE HAVE A LOT OF
PEOPLE IN LINE WITH THEIR HANDS
UP.
BUT, MAYBE WE'LL COME BACK TO
JO'S QUESTION AFTER WE TALK TO
THESE PEOPLE WITH THE HANDS UP.
STEPHEN?
>>STEPHEN CAMARATA: I GO BACK
TO THE TIME WHEN I FIRST
ENCOUNTERED AUTISM.
I WAS TRAINED IN PSYCHOTHERAPY.
EVEN THEM I WAS SKEPTICAL.
WE HAVE BEEN BLAMING THE PARENTS
A LOT.
ONE OF THE THINGS I REALLY WORRY
ABOUT IS THAT WE DO IN FACT NOW,
IT SHOULD BE A STANDARD OF CARE
THAT WE PROVIDE PARENT SUPPORT
AND PARENTS BECOME PARTNERS IN
THE PROCESS.
ON THE OTHER HAND, I THINK IT'S
REALLY IMPORTANT THAT IN
ADDITION TO UNDERSTANDING THE
TRAUMA AND THE NEEDS THAT WE
HEARD FROM OUR FIRST PERSON
SPEAKERS AND SO PROFOUNDLY MOVED
BY THAT.
I THINK WE ALSO WANT TO
UNDERSTAND DIFFERENT CAPACITIES
OF PARENTS SO THAT IT'S NOT THE
CASE THAT WE TRY TO HAVE THE
PARENT BECOME A MINI-ME
BEHAVIORAL THERAPIST.
SOME CAN DO THAT.
I HAVE PARENTS THAT WORK WITH
SPEECH PASS.
I HAD A FAMILY COME FROM
MISSISSIPPI.
MOM IS A SINGLE MOM.
GRANDMA IS HELPING OUT.
AND HER SON IS NON VERBAL,
6-YEAR-OLD.
I HELPED HIM WITH AUGMENTATIVE
AND HER COMMENT TO ME WAS, SHE
COULDN'T REALLY UNDERSTAND
AUGMENTIVE DEVICE AND THAT SHE
FELT A LOT OF PRESSURE TO
COMPLETE ALL THESE LESSONS.
AND IT WAS JUST VERY DIFFICULT
FOR HER.
SO I THINK AS WE GO FORWARD, I
THINK WE WANT TO BEAR THAT IN
MIND.
WE WANT TO THINK ABOUT OUR FIRST
PERSON SPEAKERS IN TERMS OF ARE
WE PUTTING UNREAL EXPECTATIONS
ON THESE FOLKS?
AND CERTAINLY THE NEURODIVERSE
MOVEMENT HELPED US TO UNDERSTAND
THAT BETTER.
BUT WE ALSO WANT TO MAKE SURE WE
ARE NOT REBLAMING THE MOTHERS.
I THINK THERE IS ALREADY PLENTY
OF GUILT TO GO AROUND AND WE
WANT TO BE REALLY MINDFUL OF
THAT AND WE WANT TO ANSWER THAT
WITH DATA.
SO GOING FORWARD, BIG PICTURE
MEASURES, WE ALSO WANT TO
UNDERSTAND WHERE WE CAN MEET
PARENTS WHERE THEY ARE TO
SUPPORT THEM IN THEIR JOURNEY.
>>THANK YOU, STEPHEN.
MATTHEW.
>>THANKS.
I WANT TO MAKE TWO POINTS
BRIEFLY.
NUMBER 1, WE TALKED A LOT ABOUT
PARTICIPATORY RESEARCH.
I THINK WE ALL AGREE ON THAT.
BUT OUR GOAL OF COURSE IS TO
DEVELOP THERAPEUTIC TECHNIQUES.
IT CAN BE DEPLOYED TO IMPROVE
QUALITY OF LIFE.
AND PARTICIPATORY RESEARCH NEEDS
TO LEAD TO PARTICIPATORY
THERAPY.
AND PARTICIPATION IN THERAPY.
TOO OFTEN PUBLICLY-FUNDED
PROJECTS RESULT IN PRIVATE SPIN
OFFS THAT RESULT IN METHODS AND
TECHNOLOGIES AND DIAGNOSTIC
TESTS BEING MARKETED FOR
HUNDREDS OR EVEN THOUSANDS OF
DOLLARS TO FAMILIES WHO ARE
ALREADY BEING IMPOVERISHED BY
THIS CONDITION.
NOW THAT IS BAD ENOUGH IN
HIGH-INCOME COUNTRIES BUT WHEN
YOU LOOK AT IT IN A GLOBAL
CONTEXT, WHERE PEOPLE -- YOU'RE
NOT GOING TO HAVE A TABLET.
THEY PROBABLY MIGHT HAVE A
SMARTPHONE.
THEY MIGHT NOT EVEN HAVE A
TOILET BUT MANY PEOPLE DO HAVE A
SMARTPHONE.
THE TROUBLE IS THAT WE ARE
DEVELOPING THESE THERAPIES THAT
ARE POTENTIALLY GOING TO BE
STOPPED IN THE PRIVATE COMPANIES
AND NOT BE ACCESSIBLE EVEN FOR
PEOPLE IN THE UNITED STATES.
AND CERTAINLY NOT ACCESSIBLE ON
A GLOBAL SCALE.
WE HAVE SEEN THIS HAPPEN BEFORE
WHEN AUTISM DIAGNOSTIC TESTS.
WHY DOES IT NOT GET USED IN
INDIA?
IT'S BECAUSE NOBODY CAN PAY FOR
IT.
THAT IS ONE POINT.
THE OTHER POINT IS, WE SAID THAT
ALL PEOPLE SHOULD BE ENTITLED TO
INDEPENDENT COMMUNICATION AND
THEN THAT IS A GOAL TO WHICH I
WHOLEHEARTEDLY SUBSCRIBE.
BUT IN ADDITION, PEOPLE SHOULD
BE ENTITLED TO RESPECT AS
PERSONS.
AND JORDYN MADE A VERY ELEGANT
POINT ABOUT THAT.
SHE WAS BEING -- SHE TALKED
ABOUT BEING TALKED AROUND AND
TALKED DOWN TO.
I RECALL THAT THERE WAS A PERSON
WITH -- WHO WAS AN AAC USER WHO
APPROACHED.BIDE WHEN HE WAS ON
THE CAMPAIGN TRAIL.
AND BIDEN TALKED TO HIM AS
THOUGH HE WERE SOME KIND OF
FOOL.
TALKING DOWN TO HIM SAYING, YOU
ARE SMART.
I WISH I COULD FIND THE VIDEO ON
YouTube.
IT ENRAGED ME.
NOW I DON'T KNOW HOW MUCH MY
BROTHER -- HOW MUCH OF MY
BROTHER'S JOHN'S ASSISTED TYPED
COMMUNICATIONS CAME FROM HIM.
I KNOW THAT SOME OF THEM DO.
I ALSO KNOW THAT SOME OF THEM
HAVE NOT.
BUT WHAT I DO KNOW IS THAT WHEN
HE WAS GIVEN ACCESS TO TYPING,
AND WHEN PEOPLE STARTED TAKING
HIM SERIOUSLY AS A CONVERSATION
PARTNER, YOU COULD SEE THE
RELIEF IN HIS FACE.
AND I DON'T CARE IF THE TYPING
IS ALL RUBBISH.
I DON'T THINK ALL OF IT IS.
BUT THAT RESPECT, THAT BEING
TAKEN SERIOUSLY IS ALSO HIGHLY,
HIGHLY IMPORTANT.
AND WE NEED TO KEEP THAT IN MIND
ALWAYS.
>>JUDITH COOPER: THANK YOU,
MATTHEW.
VERY IMPORTANT POINT.
ZACK?
>>SO, RIGHT.
I ALSO WOULD LIKE TO MAKE A FEW
POINTS.
A LITTLE OFF TRACK FROM WHERE
THE LAST COUPLE OF CONVERSATION
POINTS HAVE TAKEN US.
BUT I WANT TO SEAR BACK A LITTLE
BIT TOWARDS THE HETEROGENEITY OF
THIS POPULATION.
BECAUSE THIS IS SOMETHING THAT
HAS COME UP A FEW TIMES TODAY.
AND ONE OF THE -- AGAIN BROUGHT
UP A LOT YESTERDAY TOO.
BECAUSE AGAIN, DESPITE ALL FOLKS
HERE BEING MINIMALLY VERBAL AND
MINIMALLY SPEAKING OR NON VERBAL
AND NON-SPEAKING, AGAIN WE ARE
NECESSARILY TALKING ABOUT
DIFFERENT CORE DEFICITS THAT ARE
CAUSING THE LOW LEVELS OF SPEECH
OR LANGUAGE.
SOME OF IT IS SPEECH.
SOME OF IT IS LANGUAGE.
SOME OF IT IS COCK NITION.
AND THOSE ARE FUNDAMENTALLY
DIFFERENT THINGS -- COGNITION.
-- THAT PERHAPS WE FUND
DIFFERENT INTERVENTIONS.
IF YOU SIMPLY NEED OR HAVE
INTACT LANGUAGE AND YOU NEED
SOMETHING TO COMMUNICATE,
BECAUSE YOUR LANGUAGE IS INTACT,
THAT'S GREAT.
IT'S EASY FIX.
HOPEFULLY.
YOU DON'T NEED TOO MUCH IN THE
WAY OF ACTUAL LANGUAGE
INSTRUCTION.
YOU MIGHT ACTUALLY HAVE A GREAT
RECEPTIVE VOCABULARY ALREADY.
IN SOME CASES YOU DON'T HAVE THE
CONCEPTUAL KNOWLEDGE TO PRODUCE
ANY LANGUAGE.
YOU MAY HAVE A PRETTY SEVERE
INTELLECTUAL DISABILITY AND YOU
MAY NOT -- YOU MAY BE PRETTY
CONCEALING BY YOUR COGNITION.
IN THOSE CASES, THERE MIGHT NOT
BE A LOT LANGUAGE INTERVENTION
CAN DO FOR YOU.
CLEARLY THESE ARE DIFFERENT
PEOPLE WHO NEED DIFFERENT
THINGS.
WE NEED TO DO MORE BEFORE WE
IMPLEMENT THE INTERVENTIONS TO
SUBTYPE PEOPLE, TO UNDERSTAND
WHO IS GOING TO EVEN POTENTIALLY
BENEFIT FROM INCLUSION IN A
TRIAL.
IT'S HARD, OBVIOUSLY WHEN WE GET
TO THE 3-YEAR-OLDS,
TWO-YEAR-OLDS.
WE DON'T DIAGNOSE INTELLECTUAL
DISABILITIES IN THESE KIDS.
EVEN THE KIDS WHO ARE LIKE,
OKAY, THIS IS A GLOBAL DELAY.
WE ARE PRETTY SURE.
ACCOUNT WE HAVE THE DIAGNOSIS
AND FRAGILE X -- THERE ARE
[ INAUDIBLE ]
MORE SEVERE BUT OKAY.
BUT IN IDIOPATHIC ID, WE ARE NOT
SURE.
WE HEDGED, ET CETERA.
THERE ARE ALL SORTS OF VARIABLE
TRAJECTORIES.
AND IT'S VERY IMPORTANT FOR US
AS CLINICIANS TO FIGURE OUT HOW
CAN WE SUBTYPE?
HOW CAN WE STRATIFY?
BECAUSE THAT'S GOING TO MATTER A
LOT, ESPECIALLY IF WE ARE TRYING
TO START EARLY TO MATCH THE
CHILD, MATCH THE PERSON TO THE
INTERVENTION.
BECAUSE AGAIN WE WANT OUTCOMES
THAT ARE GOING TO BE FUNCTIONAL
FOR PEOPLE.
AND CLEARLY THEY WILL BE
DIFFERENT FOR DIFFERENT PEOPLE.
>>JUDITH COOPER: THANK YOU,
ZACK.
GIACOMO?
>>THANK YOU.
YES, I RAISED MY HAND BECAUSE I
WANTED TO RESPOND TO OUR
COLLEAGUE, JOE ABOUT MEASURES.
NOT ME, BUT MY CANADIAN
COLLEAGUES, ISABEL AND HELL AN
FLANAGAN CREATED A TOOL CALLED
THE ASSESSMENT OF FACE OF
PRESCHOOL LANGUAGE OR APPLE,
WHICH APPLIES TO LANGUAGE
BENCHMARKS FRAMEWORK FOR
PROFILES OF LANGUAGE LOOKING AT
PRAGMATICS, VOCABULARY, GRAMMAR.
AND DIFFERENT DIMENSIONS OF
LANGUAGE THAT CAN BE USED
FLEXIBLEY THROUGH FROM
TRANSCRIPTS OR FROM STANDARDIZED
MEASURES WHICH WE HAVE USED FOR
WHAT I'M LEADING IN THESE FINAL
STAGES.
WE WERE ABLE TO CHARACTERIZE A
SAMPLE OF 1000 OR SO CHILDREN
WHO RECEIVED THE INTERVENTION
AND HALF OF THEM WERE IN A --
MINIMALLY VERBAL AFTER THE
INTERVENTION AND WE ARE TRYING
TO UNDERSTAND WHY.
IT'S A GREAT TOOL.
I ALSO WANTED TO -- I REALLY
AGREED ON THE IDEA THAT WE NEED
TO BE ON THE SAME PAGE.
BUT I THINK WE ARE NOT DOING
ENOUGH METICULOUS EXAMINATIONS
OF WHAT ARE THE INTENTIONS THAT
SOMETIMES PREVENT US FROM BEING
ON THE SAME PAGE IN BETWEEN
SCIENTIST OR PEOPLE TRAINED AS
SCIENTISTS.
AND STAKEHOLDERS IN THE
COMMUNITY.
AND I THINK SOME OF THE ONGOING
TENSIONS MIGHT BE RELATED TO THE
FACT THAT A SCIENTIST WE ARE
TRAINED TO BE SKEPTICAL TO STAY
AWAY FROM ANECDOTAL EVIDENCE AND
THIS MENTALITY THAT COMINGS FROM
OUR TRAINING, PROBABLY COMES
ACROSS AS NOT TRUSTING OR NOT
REALLY WANTING TO ENGAGE WITH
PEOPLE'S LIVED EXPERIENCE.
AND THAT IS ATTENTION.
I'M NOT SAYING IT IS WRONG TO BE
A SCIENTIST OR THAT WE NEED TO
ENGAGE WITH ANY LIVED WITH
EXPERIENCE.
BUT I CAN SEE WHEN I TRAIN YOUNG
SCIENTIST THEY NEED TO STRIKE A
BALANCE BETWEEN WHAT IS
LISTENING TO PEOPLE'S LIVED
EXPERIENCE WHILE ADOPTING THE
FOUNDATION OF THE SCIENTIFIC
METHOD IS A HEALTHY SKEPTICISM.
IT'S LOOKING AT GOING BEYOND
WHAT YOU IMMEDIATELY FEEL.
SO THAT CREATES A COMPLICATED
DYNAMIC IN THE FIELD THAT WE
NEED TO STUDY MORE.
THIS IS ALSO IN ITSELF A
RESEARCH QUESTION ON HOW WE
CONVEY BOTH PRIORITIES.
AND SAME WITH THE USE OF
SPECIFIC TERMS.
LIKE IQ AND INTELLECTUAL
DISABILITY WHICH ARE MANAGED TO
ACCOMPLISH WHAT WAS SAYING
BEFORE.
PHENOTYPING PEOPLE SO WE
UNDERSTAND AND WHAT ZACK WAS
SAYING, UNDERSTAND INDIVIDUAL
DIFFERENCES BETTER IF WE
QUANTIFY.
WE ALSO UNDERSTAND INTELLECTUAL
DISABILITY COMES ACROSS AS A
DEROGATIVE TERM THAT PEOPLE WANT
TO DISTANCE THEMSELVES FROM.
AND IT'S DISTANCING THEMSELVES
FROM INTELLECTUAL DISABILITY CAN
CREATE OR PUT YOU IN A CORNER
AND YOU DON'T WANT TO TALK ABOUT
IT ANYMORE BECAUSE IT'S GOING TO
BE, COME ACROSS AS IF YOU ARE
UNDER VALUING PEOPLE.
AND THAT CONVERSATION BECOMES
EVEN MORE DIFFICULT BECAUSE THEN
OFTEN WE HEAR COMMENTS ABOUT THE
RICHNESS OF THE HUMANITY OF
PEOPLE OR WE CELEBRATE THEIR
HUMAN FULLNESS IN RELATIONSHIP
TO SOMEONE'S IQ WAS
UNDERESTIMATED AND THEN IT CAME
OUT THAT THAT PERSON WAS INDEED
EXTREMELY INTELLIGENT AND JUST
HAD DIFFERENT BARRIERS.
BUT IT'S VERY IMPORTANT THAT
THIS FULLNESS, THIS QUALITY IS
ALSO ACKNOWLEDGED IN PEOPLE WHO
HAVE AN INTELLECTUAL DISABILITY
AND HAVING THIS DISABILITY
DOESN'T MAKE A PERSON LESS
SUCCESSFUL PERSON.
AND SOMETIMES WE JUST NEED TO
MAKE SURE IS THAT THOSE
NARRATIVES OF UNDERESTIMATING
SOMEONE'S INTELLIGENCE ARE NOT
ULTIMATELY THE NARRATIVE OF
APPRECIATING THE STRENGTHS OVER
SOMEONE WHO MIGHT NOT HAVE THE
SAME LEVEL OF INTELLIGENCE.
>>JUDITH COOPER: EXCELLENT
POINT.
THANK YOU VERY MUCH.
KAREN?
>>KAREN: THANK YOU FOR TAKING
MY COMMENT.
IT MY COMMENT PICKS UP ON WHAT A
LOT OF PEOPLE HAVE SAID IN
DIFFERENT WAYS AT DIFFERENT
POINTS IN THE CONFERENCE.
AND IT TOUCHES ON THE NEED
FOR -- DESCRIPTIONS OF THE
BLENDED STUDIES, THE NEED FOR
SENSITIVE AND USEFUL OUTCOME
MEASURES AND WHAT JOE WAS JUST
SAYING ABOUT CREATING
OBSERVATIONAL STUDIES.
I THINK ONE CHALLENGE THAT I
HAVE IN THIS AREA IS THAT IF I
WANT TO INVESTIGATE A
DEVELOPMENTAL TRAJECTORY,
ESPECIALLY AS IT IS AFFECTED BY
TREATMENT, I DON'T KNOW WHAT I
AM MEASURING IT AGAINST AND I
CAN'T NOT GIVE A CHILD THERAPY.
SO I THINK THAT SOMEHOW IF WE
HAVE ROOM FOR PHENOTYPING OR
NATURAL HISTORY STUDIES THAT
JUST FOLLOW PEOPLE FOR MANY,
MANY YEARS IF THEY ARE WILLING
TO BE IN PARTNERSHIP WITH A
RESEARCHER.
WE COULD PROBABLY COME UP WITH
SOME MODULARIZED MEASURES,
TAKING MY INSPIRATION FROM THE
ADOS WHERE SOME PEOPLE GET --
THERE IS SOME SMALL SET OF
MEASURES THAT EVERYBODY GETS AND
THEN AS PEOPLE'S ABILITIES
DEVELOP AND GROW, THEY GET MORE
MEASURES.
SOMETHING TO CONSIDER.
>>JUDITH COOPER: THANK YOU.
LARRY?
>>LARRY: I'D LIKE TO RESPOND
WHAT LEN BROUGHT UP.
GREAT QUESTIONS.
AND I LOVE THAT QUESTION.
SO THE FIRST THING ABOUT
COMBINED TREATMENT BEHAVIORAL
AND DRUGS FOR EXAMPLE, YOU HAVE
TO DECIDE WHETHER THE BEHAVIORAL
AND THE DRUG ARE POINTED AT THE
SAME THING.
THEY DON'T HAVE TO BE.
IT'S EASIER IF THEY ARE BECAUSE
YOU'RE LOOKING FOR ADDITIVE
EFFECT.
THE SECOND POINT IS THE PLACEBO
CONTROL REFLECTS, IT OUGHT TO
REFLECT THE SIMPLE TRUTH THAT WE
DON'T KNOW IF THE MEDICINE HELPS
OR NOT.
AND SO THE IDEA THAT PARENTS MAY
WANT THE MEDICINE, THEY HAVE IT
IN THEIR BELIEF THAT IS IT GOING
TO HELP BUT WE DON'T KNOW.
AND SIDE POINT, IT WAS MENTIONED
EARLIER THAT YOU COULD PERHAPS
USE THE PLACEBO RUN IN AS A WAY
TO DO TEST AND RETEST.
I UNDERSTAND THE IMPULSE BUT NOT
REALLY.
BECAUSE PLACEBO PEOPLE HAVE
EXPECTATIONS THAT COULD EFFECT
TEST AND RETEST.
AND THEN THE POINT ABOUT PEOPLE
THAT GET RANDOMIZED PLACEBO OR
GET NOTHING.
THEY ARE GETTING THE BEHAVIORAL
INTERVENTION AND YOU CAN OFFER
THE MEDICATION AFTER THE
RANDOMIZED PHASE.
SO IT ISN'T A BUST.
AND THEN, LAST BUT NOT LEAST, ON
THE ISSUE OF OUTANY MEASURE.
PARENT RATINGS ARE GREAT.
I THINK THEY ARE GREAT.
AND A PARENT MEDIATED
INTERVENTION IS COMPLICATED
BECAUSE THEY ARE PART OF THE
INTERVENTION.
SO, THEY CAN'T STAND ALONE.
AND BACK TO MICHAEL SAND BANK
AND COMPANY'S META-ANALYSIS THAT
THERE WERE A LOT OF STUDIES THAT
DID NOT HAVE BLINDED OUTCOMES.
AND SO, YOU NEED TO HAVE IN
ADDITION TO PARENT RATINGS, A
WAY TO GET AT BLINDED OUTCOMES
LIKE THE CGI.
AND THE CGI HAS BEEN AROUND FOR
50 YEARS IN DRUG RESEARCH.
AND IT IS A WAY OF HAVING A
CLINICIAN DIVIDE THE WORLD INTO
POSITIVE RESPONSE AND NEGATIVE
RESPONSE.
IT HAS TO HAVE INPUTS.
AND IN OUR WORK, ONE OF THE MAIN
INPUTS WE GET IN ADDITION TO
PARENT RATINGS AND PERFORMANCE
RATINGS IS THE PARENT TARGET
PROBLEM.
IT'S A SIMPLE DESCRIPTION OF THE
CHIEF PROBLEMS THAT THE PARENT
IS DEALING WITH AND TO TRACK
THAT NARRATIVE OVER TIME AS A
WAY TO MAKE THE CGI RATING.
>>THANK YOU.
CAITLYN.
>>THANK YOU.
I WANTED TO ECHO WHAT A LOT OF
PEOPLE SAID ABOUT THINKING,
GRANT AND JORDYN FOR SHARING
THEIR PERSPECTIVES.
ONE OF THE THINGS THAT I WAS
HEARING AS YOU WERE DESCRIBING
SOME VERY VISCERAL REACTIONS TO
SOCIAL INTERACTION WHEN'S YOU'RE
USING DIFFERENT AAC DEVICES AND
LEARNING WHAT COMMUNICATION
PIECES WORK FOR YOU.
IT WAS REMINDING US THAT THESE
EXPERIENCES HAVE THESE LONG
LASTING IMPRINTS ON HOW OUR
BRAINS ARE FORMING AND THOSE
SUBSTRATES.
SO REALLY MAKING SURE THAT WHEN
WE ARE TALKING THROUGH
INTERVENTIONS, WE ARE THINKING
ABOUT WAYS OF NOT ONLY PROVIDING
THE TECHNOLOGY OR THE TECHNIQUES
TO ENABLE COMMUNICATION, BUT
THINKING ABOUT THESE
SOCIALIZATION PROCEDURES.
SO IF IT'S A MATTER OF HAVING A
NEW DEVICE, IS THERE A WAY TO
ALSO BUILD IN THOSE SOCIAL
SUPPORTS AT THE LOCAL LEVEL IN
THE CLASSROOM AS WELL AS HAVING
A QUICK WAY AND EXPLAINING AND
TEACHING?
I THINK LEN MENTIONED THIS
YESTERDAY.
WE NEED MAKE SURE WE ARE
TEACHING ETIQUETTE FOR THE OTHER
SIDE OF THE COMMUNICATION.
SO IT'S NOT PUTTING EVERYTHING
BACK ON THE INDIVIDUAL.
AND THE OTHER UNDERLYING POINT I
WANT TO EMPHASIZE, YOU TALKED A
LITTLE BIT ABOUT THIS AND I
THINK ZACK MENTIONED COMING BACK
TO THINKING THROUGH THE ETIOLOGY
AND WE'RE NOT NECESSARILY ALWAYS
BEING AS INCLUSIVE.
SO I SPENT A LOT OF TIME LAST
YEAR DRIVING AROUND THE COUNTRY
AND WORKING WITH SOME OF OUR
MINIMALLY VERBAL NON-SPEAKING
KIDDOS WHO HAVE NEVER REALLY
SEEN A SPEECH-LANGUAGE
PATHOLOGIST BECAUSE THEY DON'T
HAVE ACCESS TO THAT.
SO A LOT OF US ARE IN OUR URBAN
HUBS AND WE ARE CREATING THESE
AMAZING PIECES BUT THINKING
ABOUT HOW WE ROLLOUT OUR
INTERVENTIONS AND BUILDING TRULY
INCLUSIVE PRACTICES TO REDUCE
THOSE FEELINGS OF SEGREGATION
THAT JORDYN MENTIONED.
AND I THINK IT WILL BE
ABSOLUTELY CRITICAL TO CREATING
WELL-BEING IN AS MANY FOLKS AS
WE CAN.
>>JUDITH COOPER: THANK YOU.
DANNY.
>>DANNY: CAN YOU YOU HEAR ME?
I'LL BE QUICK.
I WANTED TO SHARE THREE
OBSERVATIONS BASED ON ALL OF THE
EXCITING THINGS I HEARD TODAY.
MY FIRST ONE IS IN RESPONSE TO
THE EXCITEMENT BY LARRY, LEN AND
OTHERS ON MULTICOMPONENT
INTERVENTIONS.
I WANTED TO SHARE THAT BASED ON
MY 22 YEARS OF RESEARCH, IN
ACTUAL PRACTICE SETTINGS, OKAY,
SO I'M TALKING ABOUT IN ACTUAL
PRACTICE SETTINGS, ALMOST ALL
INTERVENTIONS I HAVE EVER SEEN
OR WORKED ON ARE MULTICOMPONENT.
OKAY?
HANDS DOWN.
AND I DIDN'T SAY ALL OF THEM
BECAUSE WE MIGHT GET LUCKY AND
BE ABLE TO FIND ONE OR TWO.
BUT ALMOST ALL OF THEM ARE
MULTICOMPONENT.
AND I THINK ONE REASON WE MIGHT
BE SEEING THIS AS A NOVELTY IS
BECAUSE MANY OF US ARE TRAINED
IN EFFICACY RESEARCH WHERE THE
GOAL IS TO ISOLATE ONE STINGEL
THING AND CONTROL THE REST OF
THE WORLD.
SO THAT BRINGS ME TO MY SECOND
COMMENT.
MY SECOND INNOCENT TARGETED AT
JUDITH BUT MAYBE ALSO ALL OF US
SCIENTISTS.
I REALLY.
TO GET MORE SERIOUS IN OUR
AUTISM RESEARCH ABOUT THE
HANDOFF FROM EFFICACY TO
EFFECTIVENESS TO IMPLEMENTATION.
WE ALL LOVE THE TRANSLATIONAL
MODEL BUT I THINK WE'RE NOT
DOING A GREAT JOB OF IT.
AND THERE IS SO MUCH WE CAN DO
THAT IS NOT THAT HARD IN AUTISM
TO SORT OF SPEED UP THAT TRACK.
OKAY?
AND LET ME STOP THERE BECAUSE I
THINK WHAT ENDS UP HAPPENING IS,
AS WE MOVE DOWN THAT
TRANSLATIONAL TRACK, THINGS GET
MORE MULTICOMPONENT AND MORE
REAL AND MORE EXCITING BUT ALSO,
THIS IS KEY, JUDITH, NEWER IDEAS
ARE NEEDED.
AND THIS WHOLE IDEA THAT I
SHARED WITH YOU EARLIER ABOUT
OPTIMIZATION BECOMES EVER MORE
IMPORTANT AS WE MOVE INTO
EFFECTIVENESS AND
IMPLEMENTATION.
BECAUSE NOW THE RESEARCH IS NOT
ABOUT ISOLATING THIS ONE LITTLE
THING IN SOME LABORATORY AND IF
YOU FORCE EVERYONE TO TAKE THE
MED, YOU FIND THAT IT WORKS.
THAT'S GREAT.
I DON'T HAVE A PROBLEM WITH
THAT.
BUT AS WE MOVE INTO THE REAL
WORLD, WE ARE REALLY TRYING TO
ASSEMBLE AND CONSTRUCT
REAL-WORLD INTERVENTIONS THAT
HAVE VARIOUS MOVING PARTS.
AND I JUST NEED US IN AUTISM TO
LET GO OF -- THERE IS ONLY ONE
WAY TO DO THAT KIND OF RESEARCH.
I'LL STOP THERE AND I HOPE THAT
WAS PROVOCATIVE AND EXCITING FOR
YOU.
>>CAN I JUST SAY AMEN!
[ LAUGHS ]
>>JUDITH COOPER: THANK YOU,
BOTH.
WE ARE LISTENING.
STEPHEN?
>>STEPHEN CAMARATA: SOMETIMES I
HAVE A LOT OF POPULATION AROUND
ISSUES AND I REALLY WANT TO PUT
OUT -- PASSION -- THIS NOTION OF
DISABILITY AND TURN IT ON ITS
HEAD.
WHEN I'M FORTUNATE ENOUGH TO
MEET A FAMILY AND A PERSON WITH
QUOTE/UNQUOTE INTELLECTUAL
DISABILITY, IT MEANS TO ME
SIMPLY THAT I'M GOING TO HAVE TO
WORK HARDER TO BE MORE FOCUSED
AND BE BETTER AT HELPING THAT
PERSON WITH COMMUNICATION OR
WHATEVER IT IS THEY NEED.
BECAUSE THERE IS A HIGHER PRICE
TO THAT KNOWLEDGE.
AND SO, TO ME, I DON'T WANT TO
SEE IT AS EXCLUSIONARY OR
LIMITING.
I WANT TO SEE IT AS SAYING,
LOOK, THIS PERSON IS GOING TO
TAKE LONGER.
THEY HAVE MORE NEEDS.
AND SO I HAVE TO BE REALLY GOOD
AT PRIORITIZING.
I HAVE TO BE REALLY EFFICIENT IN
THE TEACHING AND IT MAY INVOLVE
THESE MULTIPLE COMPONENTS,
THINGS WE TALKED ABOUT.
BUT I JUST DON'T LIKE THINKING
ABOUT THIS AS A LIMITING FACTOR.
I WANT TO THINK ABOUT IT AS OH,
MY GOSH!
ONE OF MY CHILDREN HAS SEVERE
RECEPTIVE LANGUAGE DISORDER
GROWING UP AND IT TOOK ME FAST
MAPPING.
IT WAS SLOW MAPPING.
IT TOOK 5 HELPED PRESENTATIONS
TO GET HIM TO REMEMBER A WORD
FROM ONE DAY TO THE NEXT.
AND -- 500 -- SO HI TO BE VERY
EFFICIENT ABOUT WHAT I WAS DOING
AND HOW I WAS DOING IT.
AND BY THE WAY, HE WAS
MISIDENTIFIED AS INTELLECTUAL
DISABILITY BACK THEN.
BUT MY POINT IS THAT I DON'T
WANT TO TALK ABOUT THAT WAY.
I DON'T WANT TO ACCEPT THE
PREMISE.
I WANT TO SAY LOOK, EVERYBODY
CAN LEARN.
EVERYBODY -- WE CAN BUILD WITH
EVERYBODY.
AND WHAT THIS GROUP NEEDS TO DO
IS TO GIVE PEOPLE THE TOOLESS TO
DO THAT IN THE MOST EFFECTIVE
AND EFFICIENT WAY, ESPECIALLY
WHEN WE KNOW IT'S GOING TO BE A
HIGHER COST TO TEACHING AND
LEARNING.
THAT'S MY RANT.
>>THANK YOU, STEPHEN.
IT'S NOT A RANT AT ALL.
COURTNEY.
>>I'M GOING TO REPEAT MYSELF
SLIGHTLY BUT I REALLY WANT TO
EMPHASIZE WITH CATHY LORD SAID
ABOUT THE NEED TO REALLY THINK
BIG AND LOOK AT SYSTEMIC THINGS
WE CAN DO TO MOVE THIS FORWARD.
I THINK I MENTIONED YESTERDAY
THESE INITIATIVES AND
DEVELOPMENTAL PSYCHOLOGY AND
EXPERIMENTAL PSYCHOLOGY, MANY
BABIES, MANY LABS, WHERE THEY
HAVE SET PROTOCOLS AND THEY GET
LABS ALL OVER THE WORLD TO TRY
AND REPLICATE STUDIES.
AND I THINK THIS IS SUCH A
FASCINATING PROGRAM OF RESEARCH
THAT HAS A HUGE NUMBER OF
BENEFITS.
ONE, YOU CAN GET ENDS,
SUFFICIENT ENDS TO SAY THINGS
ABOUT MEASUREMENTS AND ABOUT
INDIVIDUAL DIFFERENCES AND
RESPONSE TO TREATMENT.
YOU CAN LOOK AT CONTEXTURAL
EFFECTS.
YOU CAN DEFINITELY INCREASE YOUR
DIVERSITY.
AND IT ALSO MAKES RESOURCES
AVAILABLE TO COUNTRIES AND TO
RESEARCHERS WHO MIGHT NOT HAVE
THOSE RESOURCES INCLUDING EARLY
CAREER RESEARCHERS.
SO I JUST THINK IT'S A WIN-WIN.
AND THIS SEEMS LIKE A FORUM
WHERE YOU COULD GET SOME
AGREEMENT ON KIND OF KEY THINGS
THAT YOU MIGHT WANT TO PUSH FOR
REPLICATION AND WHERE YOU CAN
POOL DATA AND WHERE YOU CAN
BUILD ON THE EXPERTISE OF PEOPLE
WHO ARE DOING META-ANALYSIS AND
LOOKING AT MEASUREMENT ON A
REALLY BIG SCALE.
AND I THINK THAT WOULD BE SUCH A
VALUABLE THING TO DO TO PUSH
THIS AGENDA FORWARD.
>>THANK YOU, COURTNEY.
LYNNE:.
>>I WANT TO PUSH BACK ON A
COUPLE OF THINGS A LITTLE BIT.
I MEAN, I THINK ONE OF THE
REASONS THAT I THINK IT WOULD BE
USEFUL TO FIGURE OUT DESIGNS IN
WHICH WE CANNOT ONLY DO
INTERVENTIONS BUT LOOK AT THE
PSYCHOMETRIC PROPERTIES OF
OUTCOME MEASURES, IS BECAUSE WE
REALLY NEED TO AGGREGATE ACROSS
STUDIES.
I THINK THAT'S JUST A REALITY.
AND I THINK THE MORE THAT WE CAN
ACCOMPLISH MORE IN ONE STUDY --
WE DON'T WANT TO DO SLOPPY
RESEARCH.
BUT IT MAY BE WE NEED TO THINK
OF NEW DESIGNS.
THAT'S ESPECIALLY IMPORTANT
BECAUSE ONE OF THE PROBLEMS WE
HAVE WITH EVALUATING NEW OUTCOME
MEASURES IS ARE THEY SENSITIVE
TO CHANGE?
IF WE EMBED THIS IN THESE
INTERVENTIONS, WE CAN BEGIN TO
ASK THAT QUESTION.
I'M NOT GOING TO PRETEND TO
UNDERSTAND ALL THE NUANCES OF
CLINICAL TRIAL DESIGN AND LARRY
PROBABLY KNOW SYSTEM MORE ABOUT
THAT THAN I WILL EVEREVER KNOW.
BUT I THINK IT'S A CHALLENGE FOR
US.
AND I THINK THE OTHER THING -- I
AGREE WITH DANIELLE ABOUT THE
MULTICOMPONENT INTERVENTIONS
REFLECTED OF PRACTICE.
THE PROBLEM WITH THAT IS OFTEN
THESE MULTICOMPONENTS IN
PRACTICE ARE NOT DRIVEN BY
EVIDENCE.
I MEAN WE SEE THAT WITH
POLYPHARMACY WHERE WHO KNOWS
WHAT IS GETTING ADDED ON AND WHY
THINGS ARE BEING TAKEN OFF.
AND I THINK THE EXPERIMENTAL
APPROACH WHERE WE STILL TRY TO
DISENTANGLE THESE EFFECTS, IS
STILL USEFUL.
AND MAYBE EVEN MORE MOTIVATED
BECAUSE THAT REFLECTS THE
REALITY.
AND SO, THEN I THINK THE LAST
THING IS MAYBE AN ADDITIONAL
POINT AND THIS FOLLOWS UP ON
SOMETHING THAT STEVE SAID.
SOME COLLEAGUE OF MINE, JUST
PUBLISHED A PAREN WHERE SHE
AGGREGATED SOME OF OUR
INTERVENTION DATA AND LOOKED AT
MEASURES OF PARENT'S WELL-BEING
AND STRESS AT THE BEGINNING, AT
BASELINE AND WHAT SHE FOUND IS
THERE WAS SOME EVIDENCE THAT
PARENTS -- IS THIS SHOULDN'T BE
SURPRISING.
PARENTS WERE MORE STRESSED AND
PERHAPS HAD MORE EMOTIONAL
CHALLENGES AT THE START OF THE
INTERVENTION AND ARE SLOWER TO
LEARN THE INTERVENTION AND LESS
LIKELY TO IMPLEMENT IT AND THEIR
CHILDREN MAKE LESS PROGRESS.
AND SO, THIS IS NOT THE
PATHOLOGIZE PARENTS BUT I THINK
IT POINTS TO THE FACT THAT WE
REALLY NEED FAMILY SYSTEMS
APPROACH TO INTERVENTIONS TO
UNDERSTAND WHERE WE NEED TO
INTERVENE, HOW WE CAN SUPPORT
FAMILIES OPTIMALLY, WHEN IS THE
RIGHT TIME TO ASK THEM TO HELP
WITH THERAPIES AND THINGS LIKE
THAT?
AND YOU KNOW, WE CONTINUE TO
HAVE THIS FOCUS ONLY ON THE
CHILD, WHICH MAKES SENSE.
BUT ULTIMATELY THAT MAY NOT
BE -- GET US THE BIGGEST BANG
FOR OUR BUCK IN TERMS OF
INTERVENTION.
WE NEED TO LOOK AT THE WHOLE
FAMILY AS THE SOURCE OF SUPPORT
FOR AN INDIVIDUAL CHILD.
>>THANK YOU, LEN.
ELAN?
>>I DON'T KNOW MY TIMING WAS
SPEAKING COULDN'T BE ABOUT
BETTER AFTER INTERVENTION OF
STEPHEN AND INTERVENTION OF
TRAUMA SPEAKING AS PARENT.
I CAN ONLY AGREE TO WHAT HAS
BEEN SAID.
THE PHENOTYPING IS VERY
IMPORTANT.
THE ROLE OF THE PARTICIPATORY
RESEARCH WITH THE PARENTS, I
MEAN IT'S GREAT IT'S ALSO AN
ENORMOUS RESPONSIBILITY THAT IS
PUT ON THE PARENTS SHOULDERS WHO
MIGHT THINK THAT THEY ARE UP TO
DO IT.
THEY WANT TO DO IT, BUT IT'S AN
ENORMOUS CHALLENGE WHEN AT THE
SAME TIME THEY HAVE TO TAKE CARE
OF THE KID BEING SICK, THE KID
NOT EATING, THE KID HAVING
TOILETING PROBLEM.
THE PROBLEM WITH THE TEACHER.
THE PROBLEM WITH THE -- SO IT'S
AN ENORMOUS CHALLENGE.
THE FEELING OF FAILURE OF THE
PARENTS IS ENORMOUS.
ESPECIALLY WHEN THE NEW
APPROACHES ARE SUPPOSED TO BE
THIS MARVELOUS THING THAT IS
GOING TO SOLVE THE PROBLEM AND
WHEN YOUR KID DOESN'T PROGRESS,
THE PARENTS NOT ONLY -- YOU MAKE
IT MUCH HARDER FOR THE PARENTS
TO CONTINUE PARTICIPATING.
AND ALMOST -- AND SO MUCH MORE
DIFFICULT FOR THE CHILD WHEN YOU
HAVE TO SWITCH TO ANOTHER
APPROACH.
THE IDEA OF THE MULTICOMPONENT
INTERVENTION IS ALSO GREAT AND I
THINK WHAT DANIELLE SAID YES,
MOST OF THEM ARE.
BUT VERY OFTEN IT'S AGAINST THE
WILL OF THE PEOPLE THAT ARE VERY
OFTEN, ENTHUSIASTIC ABOUT THEIR
METHOD AND THEY -- THEIR METHOD
IS GOING TO BE -UE KNOW, SOLVING
THE PROBLEMMA AND NOT TO BLAME
THEM BECAUSE WE WANT THE
RESEARCH TO BE ENTHUSIASTIC.
BURR IT'S VERY DIFFICULT TO HAVE
MULTICOMPONENT APPROACHES AND
ESPECIALLY IF SOMEBODY WANTS TO
GET SCIENTIFIC DATA OUT OF IT.
WHAT IS INFLUENCING WHAT IN THE
OUTCOME?
SO BEATING UP ON THE -- ABOUT
THE TRAUMA, ABOUT WHAT LEN SAID,
ABOUT WHAT STEPHEN SAID, ABOUT
WHAT JORDYN AND GRANT SAID.
THERE IS A LOT TO DO BUT THINK
ABOUT THE STAKEHOLDER PARENTS.
THEIR ROLE YOU HAVE TO BE REALLY
CAREFUL WHAT THEY CAN UNDERTAKE,
WHAT THEY ARE ABLE TO, AND ALSO
THE FEELING OF FAILURE SHOULD
NOT DETOUR THEM TO TRY OTHER
APPROACHES.
IF THE ONE THAT WAS IN FRONT OF
THEM IS NOT SUCCESSFUL.
OKAY, I'M NOT GOING TO SPEAK
ANYMORE.
>>THANK YOU.
CAN I INTERSEABLITE?
SO JORDYN WANTS TO RESPOND TO
STEPHEN'S COMMENT.
SO I'LL TREAD FOR HER.
I WANT TO EMPHASIZE AND ADD WE
ALSO DON'T KNOW IF SOMEONE HAS
AN INTELLECTUAL DISABILITY IF
THEY DON'T HAVE ACCESS TO ROBUST
AAC.
AND IB EFFECTIVE COMMUNICATION
SYSTEMS OFTEN CAUSE PEOPLE TO
ASSUME AN INTELLECTUAL
DISABILITY.
IQ TESTS ARE NOT EVEN
EVIDENCE-BASED FOR SOMEONE WHO
CANNOT RELY ON SPEECH OR MOVE
THEIR HANDS RELIABLY.
THEN THIS BECOMES A VICIOUS
CYCLE AND LEADS TO INCREASED
SEGREGATION.
SO IMPORTANT COMMENT.
THANK YOU, JORDYN.
>>THANK YOU, JORDYN.
I THINK NEXT IS DAVID.
>>SO I ALSO WANT TO HIGHLIGHT
STEPHEN'S COMMENT WITH RESPECT
TO THE IDEA THAT TRULY EVERYONE
CAN LEARN.
AND IF THEY ARE NOT LEARNING, I
THINK IT MAY BE A QUESTION AS
MUCH OF WHAT WE ARE TRYING TO
TEACH AS WELL AS HOW WE ARE
TRYING TO TEACH.
THE GREAT MAJORITY OF AAC THAT
IS OUT THERE BEING PROMOTED MAY
DO AN OKAY JOB OF SUPPORTING
NEEDS AND WANTS IN SOME
RESTRICTED SITUATIONS BUT REAL
DOES HE NOT DO A GOOD JOB OF
SUPPORTING THE FULL RANGE OF
COMMUNICATIVE FUNCTIONS THAT
PEOPLE NEED TO BE FULL
PARTICIPANTS IN SOCIETY.
AND I THINK WE CAN SEE THAT THE
POWER THAT LITERACY HAD FOR MANY
OF THE PEOPLE ON THE SPECTRUM
THAT ARE PARTICIPATING IN THE
CONVERSATION TODAY.
SO THAT'S NOT TO SAY THAT THAT
IS THE ONLY APPROACH AND MAY NOT
BE THE VERY FIRST APPROACH.
BUT I THINK WE REALLY HAVE TO
QUESTION THE EXTENT TO WHICHY
WOO ARE INVESTING TIME AND
ENERGY IN TRYING TO PROMOTE THE
USE OF SYSTEMS THAT ULTIMATELY
ARE NOT GOING TO BE ABLE TO
SUPPORT THE WIDE RANGE OF
COMMUNICATION NEEDS THAT
AUTISTIC INDIVIDUALS WANT.
>>JANICE.
>>I COULDN'T AGREE MORE.
AND I THINK PART OF THAT IS NA
WE ALSO, WHEN WE ARE SHARING OUR
RESEARCH WITH OTHERS, NEED TO
PROVIDE VERY CAREFUL
DOCUMENTATION OF WHAT THE AAC
HAS BEEN.
BECAUSE THERE IS GOOD AAC AND
THERE IS BAD AAC, JUST LIKE
OVERING ELSE.
AND WE NEED TO UNDERSTAND WHAT
VOCABULARY HAS BEEN PROVIDED.
HOW IS THAT VOCABULARY BEEN
REPRESENTED?
HOW HAS IT BEEN ORGANIZED AND
LAID OUT WITHIN THE SYSTEM?
HOW IS THE INDIVIDUAL BEEN
EXPECTED TO SELECT IT?
WHAT OUTPUT HAS BEEN PROVIDED?
IT IS IN AND OF ITSELF AN
INTERVENTION AND RIGHT NOW, WE
ARE NOT DOING A GOOD JOB OF
DOCUMENTING THAT.
AND AS A RESULT, THERE IS SAY
BLACK HOLE WE DON'T UNDERSTAND
WHAT'S HAPPENING.
SO REALLY JUST AN URGE THAT AS
PEOPLE ARE DOING INTERVENTION
THAT IT IS THOUGHTFUL DECISIONS
ABOUT THE AAC SYSTEMS THAT ARE
BEING PROVIDED.
THAT THEY ARE PROVIDING ACCESS
TO MEANINGFUL VOCABULARY AND
MEANINGFUL WAYS TO PARTICIPATE.
AND THAT THAT IS CAREFULLY
DOCUMENTED IN OUR PAPERS NOT
JUST WE USE SYSTEM X.
THAT MEANS NOTHING.
WE NEED TO KNOW EXACTLY WHAT
THAT SYSTEM LOOKS LIKE.
SO THAT IS ONE THING.
AND THEN A SECOND THING IS, WE
TALKED A LOT ABOUT HETEROGENEITY
AND ANOTHER JUST COMMENT TO URGE
EVERYBODY AS WE ARE PUBLISHING
STUDIES THAT PROVIDE GROUP
RESULTS TO PLEASE SHARE THE DATA
OF THE INDIVIDUAL PARTICIPANTS
WITHIN THOSE STUDIES.
WE NEED TO UNDERSTAND BETTER
WHAT WORKS BEST AND SO OFTEN THE
GROUP RESULTS MASK INDIVIDUAL
PATTERNS THAT WE CAN REALLY
LEARN FROM.
SO IT'S BEEN INTERESTING TO ME
AND SOME OF THE MEDICAL
LITERATURE SPECIFICALLY.
SOME OF THE DRUG-BASED
LITERATURE, THEY REALLY FORCE
LIKE A THREE TIERED LEVEL OF
ANALYSIS WITH GROUP RESULTS
WHERE THEY LOOK AT THE GROUP
PATTERNS BUT BEYOND THAT THEY
LOOK AT WHAT PERCENTAGE OF
PEOPLE COMPLY WITH THE GROUP
PATTERNS IN AND AT AN INDIVIDUAL
LEVEL, WHAT DOLT UNIQUE CASES
LOOK LIKE WHERE PEOPLE ARE NOT
FINDING CERTAIN INTERVENTIONS
EFFECTIVE OR THEY ARE INDEED
FINDING OTHER INTERVENTION ITS
FAITHIVES?
THAT IS HOW WE ARE ANYTHING TO
LEARN WHAT WORKS BEST FOR WHOM.
SO JUST URGING EVERYBODY TO
SHARE YOUR -- SHARE YOUR
INDIVIDUAL DATA NOT JUST YOUR
GROUP RESULTS.
AND ONE FINAL QUICK COMMENT.
I THINK IT'S REALLY INTERESTING
WHEN OUR INTERVENTIONS ARE
EFFECTIVE.
IT'S ALWAYS THE INTERVENTION
THAT IS EFFECTIVE.
WHEN THEY ARE NOT, IT'S THE
INDIVIDUAL THAT DIDN'T RESPOND.
SO AGAIN, IT'S ALWAYS ON THE
INTERVENTION, ON THE JOB WE DID
IN TERMS OF DESIGNING THINGS.
SO THEY ARE EITHER EFFECTIVE OR
NOT FOR THAT PARTICULAR
INDIVIDUAL.
>>ABSOLUTELY, JANICE AND I'M
GOING TO INTERJECT AGAIN BECAUSE
FROM GRANT, JUST -- THIS IS
MOVING VERY FAST, THIS
CONVERSATION AND THEY ARE TRYING
TO GET IN THERE.
BUT FROM GRANT HE SAYS, I LOVE
WHAT YOU SAID CAITLYN, SO THIS
WAS AIFY PEOPLE AGO.
AND I COMPLETELY AGREE THAT
SCHOOL COMMUNITIES AND
COMMUNICATION PARTNERS CAN BE
TRAINED TO BE INCREDIBLE ALLIES
TO UPHOLD AAC ETIQUETTE AND THE
POINT OUT DISCRIMINATION WHEN
NECESSARY.
SO THANK YOU, GRANT FOR THAT
MEANT.
A FEW BACK.
>>CHARLOTTE?
>>IN RESPONSE TO WHAT A LOT OF
FOLKS HAVE ALREADY BROUGHT UP UI
WANTED TO MAKE A PLUG FOR
DESIGNING RESEARCH THAT HAS SOME
SORT OF FLEXIBLE SET OF
ASSESSMENTS FOR PHENOTYPING.
I KNOW A LOT OF FOLKS ON THIS
CALL ALREADY DO THAT BECAUSE YOU
WERE THE ONES THAT TRAINED ME
AND NOW I DO THAT.
BUT A COUPLE OF PEOPLE HAVE
BROUGHT UP THE ISSUE HOW TO
CHARACTERIZE HETEROGENOUS
POPULATIONS?
AND I THINK THE ANSWER IS THAT
WE CAN'T JUST CHOOSE ONE MEASURE
AND SAY, THIS IS THE MEASURE WE
ARE GOING TO USE.
SOME KIDS ARE GOING TO FLOOR OUT
AND SOME WILL CEALING OUT AND SO
BE IT.
I THINK WE AS THE RESEARCHERS
HAVE TO PUSH BACK AND ADVOCATE A
LITTLE BIT FOR -- MAY MAKE THE
STATISTICIANS CRINGE AT THE END
OF THE DAY, BUT WE NEED TO GET
MEANINGFUL NUMBERS FROM OUR
PARTICIPANTS.
AND JORDYN AND GRANT HAVE MADE
EXCELLENT POINTS ABOUT THE FACT
THAT COGNITIVE ASSESSMENTS ARE
NOT EVEN VALID IN A LOT OF THESE
POPULATIONS.
I WOULD RATHER HAVE NUMBERS FROM
A FEW DIFFERENT ASSESSMENTS THAT
I HAVE REASON TO BELIEVE ARE
GETTING AT THE SAME CONSTRUCT
THAT ARE GIVING ME VALID
INFORMATION ABOUT EACH ONE OF
THOSE INDIVIDUALS, THAN HAVE
NUMBERS ALL FROM THE SAME
ASSESSMENT WHERE I THINK ONLY
HALF THE NUMBERS ARE ACTUALLY
VALID.
SO FOR PEOPLE WHO ARE SORT OF
THINKING ABOUT THESE ISSUES OR
STARTING OUT, I WOULD ENCOURAGE
FOLKS TO THINK ABOUT A
STRUCTURED BUT FLEXIBLE SET OF
ASSESSMENTS TO TRY TO MEET THE
NEEDS OF THE DIFFERENT
INDIVIDUALS THAT WE'RE
ASSESSING.
>>THANK YOU, CHARLOTTE.
VICK RAM.
>>THANK YOU.
I WANT TO MAKE TWO POINTS.
I'M A SCIENTIST AND I HEARD A
LOT ABOUT INTERVENTIONS AND
HEARD A LOT ABOUT APPROACHES AND
I HEARD A LOT ABOUT EXPERIMENTS.
BUT I ALSO HAD A LOT OF TIME TO
SPEND WITH JORDYN AND GRANT AND
OTHER DISABLED FOLKS.
AND ONE OF THE THINGS THAT IS SO
CLEAR FROM MY EXPERIENCES WITH
THEM IS THAT THEY FEEL
UNDERSTANDABLY, THAT THE
DAY-TO-DAY EXPERIENCES AND
CHALLENGES AND OPPORTUNITIES
THAT THEY FACE ARE NOT BEING
CAPTURED BY MUCH OF THE RESEARCH
AND THE INTERVENTION AND THE
EXPERIMENTS THAT ARE BEING DONE.
AND I WANT TO GIVE YOU A
SPECIFIC EXAMPLE.
SO, I WAS REALLY MOVED YESTERDAY
BY DENISE LOMBARDI'S DESCRIPTION
IN THE VIDEO THAT SHE SHOWED OF
RJ SPELLING OUT BREAD AND THEN
GOING TO FIND THE NUMBER 6 IN
ORDER TO MAKE A REQUEST FOR
BREAD STICKS.
AND THAT'S NOT SOMETHING THAT
WOULD BE CAPTURED IN A LAB.
THAT'S NOT SOMETHING THAT TO
SOMEBODY'S POINT EARLIER AN
ANECDOTE MIGHT NOT BE BELIEVED,
IT MIGHT BE DISMISSED.
BUT IMAGINE HOW MUCH THAT TELLS
YOU ABOUT THE CREATIVITY AND THE
PROBLEM-SOLVING AND THE
COGNITION THAT RJ WAS
DEMONSTRATING IN THAT MOMENT!
SO WHAT A WONDERFUL WAY TO
LEVERAGE THAT KIND OF
EXPERIENCE, THAT KIND OF EPISODE
TO HELP RJ BUT ALSO THINK ABOUT
THE AMAZING OPPORTUNITIES.
IT WOULD BE TO LEVERAGE TO
DEVELOP A LINE OF RESEARCH ABOUT
PROBLEM-SOLVING AND CREATIVITY
IN THESE SITUATIONS THAT
NON-SPEAKING AND MINIMALLY
VERBAL PEOPLE FIND THEMSELVES IN
ALL THE TIME.
SO, I'VE HEARD THIS PLEA OVER
AND OVER AGAIN FROM THE FOLKS I
GOET TO SPEND TIME WITH, LIKE I
WISH THAT RESEARCHERS WOULD GET
OUT OF THE LAB.
COME SPEND A DAY WITH ME OR TWO
DAYS WITH ME OR A WEEK WITH ME
THROUGH ALL THE SETTINGS THAT
I'M IN.
AND THAT IS GOING TO BE
BENEFICIAL ON SO MANY WAYS.
AND I GUESS THE SECOND POINT
I'LL MAKE, I OFTEN BEEN THE
PHILOSOPHER WHO HAS A
COGNITIVELY DISABLED DAUGHTER
AND IN VARIOUS EXCHANGES SHE WAS
FORCED TO HAVE WITH PETER
SINGER, SHE ARTICULATED 4
PRINCIPLES OF WHAT SHE CALLS EP
SETTIC PRINCIPLES.
THE ONE I WILL FOCUS ON HERE IS
SHE CALLS IT EPISTEMIC MODESTY.
AND IT'S KNOWING WHAT YOU DON'T
KNOW.
AND SO WHEN IT COMES TO THINKING
ABOUT SOMEBODY'S POTENTIAL OR
SOMEBODY'S COGNITIVE ABILITY, WE
DON'T HAVE DIRECT ACCESS TO THAT
KIND OF INFORMATION ABOUT
ANYBODY.
AND THE PEOPLE WHO I'VE HAD THE
OPPORTUNITY TO SPEND WITH, A
TIME WITH AND THEIR FAMILIES S
AND MYSELF, I'M SURPRISED ALL
THE TIME ABOUT WHAT SOMEBODY
KNOWS AND CAN DO.
AND THOSE PIECES, THOSE LITTLE
GLIMPSES ARE NOT GOING TO BE
OBVIOUS BY STAYING IN THE LAB.
JUST TO REPEAT FROM EARLIER.
I THINK WE HAVE TO ALSO REMEMBER
THAT THERE ARE REAL PEOPLE
BEHIND ALL OF THIS RESEARCH.
THANK YOU.
>>THANK YOU.
ZACK.
>>OKAY.
SO, I'M TRYING TO MAKE A COUPLE
DIFFERENT POINTS HERE.
SO FIRST THING, THINKING JUST
ABOUT THE OVERALL TOPIC ABOUT
HOW DO WE GET BETTER MEASURES
FOR PSYCHOMETRICS AND OVERALL
BETTER OUTCOMES?
SO I DO ACTUALLY AGREE WITH
LARRY.
YOU DON'T REALLY WANT TO DO TEST
RETEST OVER PLACEBO.
THERE IS A LOT OF PROBLEMS WITH
THAT.
SO, BECAUSE AGAIN THERE IS LIKE
A MAJOR ISSUE WHICH IS LIKE YOU
ESSENTIALLY GAVE PEOPLE AN
INTERVENTION OVER THE PLACEBO
RUN IN.
PLACEBOS ARE AN INTERVENTION.
BUT THERE ARE OTHER OPTIONS.
NAMELY THAT YOU CAN ACTUALLY
COLLECT DATA NATURALISTICALLY.
SOMEONE ELSE EARLIER WAS
MENTIONING WE SHOULD DO MORE
NATURALISTIC DATA COLLECTION.
NATURAL HISTORY STUDIES ARE VERY
IMPORTANT.
AND I THINK ONE REAL AREA THAT I
THINK A LOT OF PEOPLE HAVE
NEGLECTED IS JUST THE DATA
COLLECTION IN EVERY DAY CLINICAL
PRACTICE.
ALL OF THESE PARTICIPANTS THAT
PEOPLE ARE THINKING OF RUNNING
THROUGH THE CLINICAL TRIALS SEE
CLINICAL PROFESSIONALS ANYWAY.
THEY SEE A LOT OF SERVICE
PROVIDERS OFTENTIMES BECAUSE
THIS IS A POPULATION THAT NEEDS
A LOT OF SERVICES AND OFTENTIMES
THESE PEOPLE ARE ADMINISTERING A
BUNCH OF STANDARDIZED MEASURES
ANYWAY.
IN THIS CASE, AS WE JUST
LEVERAGED THESE DATA, THAT
PEOPLE ARE ALREADY COLLECTING,
PUT THEM IN BIG 'OLE DATABASES
AND PUT THEM TOGETHER.
THERE NEEDS TO BE IRBs BEHIND
THESE THINGS AND STANDARDIZED
PROTOCOLS TO SOME EXTENT AND
WAYS OF POOLING THE DATA.
AND AGAIN, I THINK HAVING JUST
BIG STANDARDIZED INFRASTRUCTURE
TO DO THAT FACILITATING WOULD BE
REALLY, REALLY VALUABLE.
AND AGAIN, SAY HERE SAY GREAT
PROTOCOL FOR DOING ASSESSMENTS
IF YOU COULD FIT THIS IN WHEN
YOU SEE THESE KIND OF PATIENTS.
CLINICIANS DO THIS.
AND JOIN OUR STEP AND THEN HAVE
MANY AUTISTIC PEOPLE JOIN OUR
GROUP AND FOLLOW THEM AS LONG AS
YOU CAN.
AND THEN WE HAVE PSYCHOMELTRIX
FOR ALL OF THESE STANDARDIZED
THINGS.
ET CETERA.
ANOTHER THING IN TERMS OF
FLEXIBLE PHENOTYPING, WE COULD
POTENTIALLY DO WORK TO ACTUALLY
EQUATE ASSESSMENTS.
IF WE THINK THINGS ARE MEASURING
THE SAME CONSTRUCT.
THERE ARE PLENTY OF TECHNIQUES
THAT COULD ACTUALLY TEST THOSE
SORTS OF HYPOTHESES.
NOW GRANTED LIKE USUAL I NEED
NUTRITION ON YOUR TEAM TO RUN
THOSE KINDS OF ANALYSIS.
BUT THIS IS NOT SOMETHING THAT
IS BEYOND THE SCOPE OF A R21 TO
ACTUALLY TASK, ESPECIALLY IF YOU
HAVE DATA WITH CLINICAL TRIAL
LEVEL SAMPLES.
AND SOY, IF WE HAVE THOSE KINDS
OF DATA, IT IS VERY HIGHLY
LIKELY THAT WE WOULD BE ABLE TO
DO THAT KIND OF WORK AND THEN
FROM THE KIND OF DATA WE HAVE
ALREADY COLLECTED, ESSENTIALLY
AGAIN IN A PHASE III TRIAL, RUN
FROM THAT AND SAY, OKAY, NOW WE
SAY OKAY WE HAVE THIS REALLY
HETEROGENOUS POPULATION BUT WE
ARE OKAY MERGING THE -- I WOULD
SAY THE RECEPTIVE ONE WORD
PICTURE VOCABULARY TEST IN THIS
GROUP AND THE BODY IN THIS GROUP
AND SOME OTHER LANGUAGE TEST IN
THIS GROUP.
AND THAT IS OKAY.
BECAUSE WE WERE ABLE TO EQUATE
THEM AND -- DISCERN WILL AND
THEN THE LAST THING IS TO
VICKRA'S POINTED.
THERE ARE WAYS TO MEASURE SOME
OF THESE SORT OF VIBIETS THAT
FAMILIES CAN TELL YOU IN THE
CLINICAL ENVIRONMENT.
AND THAT IS THROUGH THE
CLINICIAN INTERVIEW.
LOTS OF TIMES IN JUST STANDARD
CLINICAL PRACTICE, HOW DO YOU
FIGURE OUT WHETHER THE PATIENT
GETTING BETTER?
YOU ASK THEM.
YOU ASK THE FAMILY.
AND YOU JUST SAY HOW ARE YOU
DOING?
THERE IS A LOT OF QUALITATIVE
INFORMATION THAT GOES INTO A
STANDARD CLINICAL ASSESSMENT.
AND OBVIOUSLY, THIS ISN'T
TYPICALLY DONE IN A CLINICAL
TRIAL.
WE TRY TO BE OBJECTIVE AND TRY
TO GET THINGS AND STRUCTURE THEM
AND PUT THEM INTO MEASURES THAT
CAN BE COMPARED BETWEEN PEOPLE.
HOWEVER, NEVERTHELESS, WE CAN
ALWAYS DO THIS IN SOME SORT OF
MORE STRUCTURED WAY.
IF WE ASK THE RIGHT QUESTIONS,
WE CAN PULL OUT THIS KIND OF
INFORMATION, FILTER IT THROUGH
CLINICAL JUDGMENT AND STILL GET
THEM TO TELL US THE VIGNETTES
THAT WILL GIVE US THIS KIND OF
INFORMATION, WHICH WE THEN
SCORE, RATE, ET CETERA, AND PUT
INTO OUR OUTCOME MEASURES.
AND I THINK HAVING MORE
CLINICIAN RATED INTERVIEW-TYPE
INSTRUMENTS COULD BE VERY
VALUABLE.
BECAUSE THEY COULD TELL US THIS
INFORMATION.
WE HAVE TO LEARN TO ASK THE
RIGHT QUESTIONS.
HOW DO WE DO THAT?
WE ASK THE STAKEHOLDERSES WHAT
THOSE QUESTIONS ARE.
>>THANK YOU, ZACK.
MARY ANN?
>>I ORIGINALLY WAS COMING ON TO
TALK ABOUT STEPHEN'S COMMENTS
ABOUT INTELLECTUAL DISABILITY
BUT I WANT TO ADD SOMETHING
ABOUT JORDYN'S COMMENTS AS WELL.
I CERTAINLY AGREE WITH WHAT
STEPHEN SAID ABOUT INTELLECTUAL
DISABILITY AND WHEN WE FOCUS ON
WHAT THE PERSON CAN DO OR HAS
THE POTENTIAL TO DO, WE OFTEN
COME AWAY WITH MUCH BETTER
OUTCOMES FOR THEM.
AND I WANT TO RESPOND TO WHAT
JORDYN SAID BECAUSE I THINK IT
IS SO CRITICAL ABOUT TESTING AND
IQ TESTS.
IQ TESTS OFTEN ARE BASED ON
LANGUAGE SKILLS AND VERBAL
SKILLS THAT SOMEBODY BRINGS WHEN
YOU ARE LOOKING AT FOLKS VERBAL
IQ.
AND INDIVIDUALS WHO ARE GOING TO
BE USING AAC DON'T BRING THOSE
SKILLS OR THEIR SKILLS CAN'T BE
TESTED IN A TRADITIONAL WAY.
SO THEY ARE PUT AT A
DISADVANTAGE FROM THE ABSOLUTE
BEGINNING WHEN THEY ARE BEING
SEEN AND INTEGRATED INTO SOME
TYPE OF INTERVENTION.
I WANT TOW ADD TO THE COMMENTS
THAT STEPHEN MADE ABOUT HOW WE
VIEW PEOPLE WITH INTELLECTUAL
DISABILITIES BECAUSE I THINK --
THIS IS ALSO TRUE FOR PEOPLE WHO
USE AAC.
THAT THERE ARE REAL MYTHS THAT
ARE OUT THERE THAT HAVE EVOLVED
OVER TIME ABOUT WHAT A PERSON
CAN DO OR WHAT AN INTERVENTION
WILL OR WILL NOT DO.
FOR EXAMPLE, AAC WILL HINDER THE
DEVELOPMENT OF SPEECH.
AND THESE ARE ALL OFTEN MYTHS
THAT ARE BELIEFS AND ATTITUDES
THAT ARE DEVELOPED AND THEY
AFFECT HOW WELL WE CAN INTERVENE
AND HOW WELL WE CAN ADVANCE
COMMUNICATION FOR INDIVIDUALS.
SO I THINK THAT YESTERDAY THE
ATTITUDES AND BELIEFS WERE
TALKED ABOUT A LITTLE BIT AND I
THINK THAT IT ENDS UP BEING A
VERY IMPORTANT PIECE OF THINGS
BECAUSE IF PEOPLE COME BOTH
FAMILIES, CLINICIANS,
PHYSICIANS, THEY COME WITH THESE
ATTITUDES AND BELIEFS.
CHANGING THOSE ATTITUDES AND
BELIEFS CAN BE VERY CHALLENGING
TASK FOR US.
BUT THEY ALSO AFFECT HOW
SUCCESSFUL AN INTERVENTION CAN
BE OR NOT.
SO THANK YOU.
AND JORDYN, THANK YOU VERY MUCH
FOR THOSE COMMENTS.
>>THANK YOU, MARY ANN.
WE HAVE FOUR MORE PEOPLE WITH
HANDS UP AND WE HAVE -- WE ARE
GETTING CLOSE TO BEING DONE.
AND I DON'T KNOW IF THEY ARE
PRESSING QUESTIONS FROM THE
VIDEOCAST.
SO I'M GOING TO GO ON AND GO TO
AMY AND I ASK EVERYBODY TO BE AS
BRIEF AS THEY CAN MAKE THEIR
POINTS SO EVERYBODY WILL HAVE A
CHANCE TO SAY THEIR PIECE.
AMY.
>>THANK YOU.
AND I WAS REALLY THINKING HARD
IF I WAS GOING TO SAY ANYTHING
BUT IN THE END I DECIDED I HAD
TO AND RESPONSE TO STEPHEN'S
CLAIM THAT HE DOESN'T WANT TO
ACCEPT THE PREMISE THAT
INTELLECTUAL DISABILITIES IS
LIMITING AND OTHER COMMENTS THAT
FOLLOWED ABOUT THE COGNITIVE
CAPACITIES THAT ARE HIDDEN IN
MANY AUTISTIC PEOPLE OR THE
PERCEPTION THAT THERE IS.
I'M SORRY THAT YOU DON'T WANT TO
ACCEPT THAT PREMISE, STEPHEN,
BUT INTELLECTUAL SIGNIFICANT
DISABILITIES IS EXTRAORDINARILY
LIMITING.
MY SON IS 24.
HE LIVES AT HOME.
HE CAN'T CROSS THE STREET BY
HIMSELF.
HE IS NEVER GOING TO GO TO
COLLEGE, DRIVE, HAVE MEANINGFUL
WORK, HAVE A ROMANTIC
RELATIONSHIP.
AND HE GETS A LOT OF JOY FROM
WATCHING SESAME STREET.
AND THAT IS FINE.
THAT DOESN'T MAKE HIM ANY LESS
HUMOR DESERVING OF OUR ATTENTION
OR OUR LABOR TO EXPAND HIS
HORIZONS.
AND INCREASE HIS COMMUNICATIVE
CAPABILITIES AND JUST HIS
OPTIONS TO OPERATE IN THE WORLD.
BUT I'M SAYING A LOT OF THIS
SANITIZING OF AUTISM THAT NOBODY
HAS A REAL INTELLECTUAL
DISABILITY AND EVERYBODY HAS
THIS INTACT MIND INSIDE THAT CAN
BE JUST ACCESSED.
THERE IS NO EVIDENCE THAT THAT
IS TRUE.
AND WE CAN'T PRETEND THAT
INTELLECTUAL DISABILITY AWAY.
IT'S SUCH -- IT IS A LIMITING
THING.
AND I JUST WANT TO JUST IMPLORE
YOU NOT TO FALL INTO THIS TRAP
THAT WE ARE SEEING WHERE THIS IS
WHY FACILITATED COMMUNICATION IS
RESURGING NOW.
OR POLICIES ARE COMING OUT FROM
STATES GETTING RID OF
DISABILITY-SPECIFIC SETTINGS AND
CERTAIN VOCATIONAL SETTINGS FOR
PEOPLE WITH DEVELOPMENTAL
DISABILITIES AND PEOPLE AT MY
SON ARE SITTING AT HOME.
WHEN YOU CLOSE THOSE SETTINGS
FOR PEOPLE WHO REALLY NEED THEM,
THEY DON'T HAVE ACCESS TO THE
SUPPORTS THAT THEY NEED.
SO, WHILE IT WOULD BE LOVELY IF
EVERYBODY HAD A TYPICAL OR
GENIUS INTELLECT, IT'S JUST NOT
THE CASE.
AND I JUST WANT EVERYBODY TO
REMEMBER THAT.
>>THANK YOU, AMY.
>>HI, TO THE POINT ABOUT
PUTTING A BUNCH OF DATA IN A BIG
PLACE TO STORE FOR PEOPLE TO
MINE, I JUST WANTED TO BRING
FROM MY BACKGROUND THAT THERE IS
A FRAMEWORK FOR THAT THAT IS
NIDCD SUPPORTED AND IT'S BRIAN
McCLINY IS THE MASTERMIND
BEHIND IT.
IT'S APHASIA DOT TOPIC DOT-ORG.
HE'S AT CARNEGIE MELON.
THERE IS 130,000 HITS ON THAT
PAGE AND DOZENS OF RESEARCHERS
SUPPORTING THAT AND I DON'T KNOW
HOW MANY PUBLICATIONS HAVE COME
OUT OF THAT.
AND AS FAR AS ENRICHING THE
LITERATURE, IT'S HELPED PROVIDE
DISABILITY AND VALIDITY AND
RELIABILITY TO OUR DISCOURSE
LITERATURE.
AND FROM THAT, THERE HAS BEEN
DEVELOPED BRIGHT HEMISPHERE
DISCOURSE TOPICS,INS FLUENCY TOP
BANK.
AND I'M PRETTY CONFIDENCE IF YOU
REACHED OUT TO BRIAN, HE WOULD
BE INTERESTED IN HELPING THIS
GROUP OF RESEARCHERS.
I'M DONE.
>>THANK YOU.
KRISTI.
>>THANK YOU SO MUCH AND I
REALLY APPRECIATE AMY CHIMING IN
WITH HER COMMENTS AND IN
GENERAL.
I HAVE A VERY PRACTICAL QUESTION
THAT I SPECIFICALLY LIKE TO
ADDRESS TO JORDYN AND GRANT BUT
ALSO WOULD LOVE THE FEEDBACK OF
THE INCREDIBLE PANEL HERE.
ON WHAT TERM TO USE GOING
FORWARD.
WE TALKED ABOUT THE
HETEROGENEITY, PHENOTYPING.
WE ALL RECOGNIZE AND APPRECIATE
THE BREATH OF THE SPECTRUM,
INCLUDING THE MINIMALLY VERBAL
NON-SPEAKING SPECTRUM.
I SPENT -- I SPENT A LOT OF TIME
FIGURING OUT HOW TO DISCUSS THIS
POPULATION NOT ONLY IN MY DAILY
LIFE.
AGAIN I'M A PARENT OF A
NON-SPEAKING PROFOUNDLY
INTELLECTUALLY DISABLED YOUNG
CHILD.
HE IS 11.
HE HAS A GENETIC DISORDER.
HE STRUGGLES WITH VERY, VERY
BASIC TASKS.
TO AMY'S POINT.
AAC HAS BEEN GIVEN TO HIM SINCE
HE WAS TWO.
IT'S STILL EMERGING.
AND SO THERE IS IN MY DAILY LIFE
THIS STRUGGLE TO ACKNOWLEDGE THE
BREATH OF THE SPECTRUM BUT ALSO
IN MY PROFESSIONAL LIFE WRITING
ABOUT IT IN LITERATURE SO OTHER
RESEARCHERS CAN FIND IT SO WE
CAN HAVE CONFERENCES AND TOPICS
AROUND THIS POPULATION AND
DISCUSSION.
SO I'D REALLY LOVE A PRACTICAL
DISCUSSION ON WHAT TERM TO USE
GOING FORWARD.
AGAIN BOTH FROM JORDYN AND GRANT
AND ANY OTHER RESEARCHERS IN
THIS POPULATION SO WE CAN MOVE
IT FORWARD BY APPRECIATING AND
IDENTIFYING THE NUANCE.
>>THANK YOU.
KRISTI.
SO I DON'T KNOW WHETHER JORDYN
OR GRANT WANTS TO GO FIRST?
>>GRANT: SURE.
I USE NON-SPEAKING WITH HIGH
SUPPORT NEEDS.
>>THANK YOU, GRANT.
WE'LL WAIT FOR A MINUTE WHILE
JORDYN IS PREPARING HER RESPONSE
RESPONSE.
>>I ALSO USE NON SPEAKING AND I
THINK IT'S HELPFUL TO TALK ABOUT
THE SUPPORTS AND SERVICES THAT A
PERSON BENEFITS FROM.
>>THANK YOU, JORDYN.
SO COMPARABLE TO WHAT GRANT WAS
POINTING OUT.
SO THE SUPPORT NEEDS.
OKAY, I'M GOING TO TAKE THE --
I'M NOT THE CHAIR BUT I'M ONE OF
THE CHAIRS.
I'M GOING TO TAKE MY PREROGATIVE
AND SAY THAT WE NEED TO -- WE
ALL HAVE BEEN SITTING FOR A
WHILE AND WE SAID WE WERE GOING
TO STOP AT 5:00.
SO WE WILL, BUT I WANT TO GIVE
SOME FINAL WORDS TO SAY IF WE
MAY.
SO, HELEN, WOULD YOU LIKE TO GO
FIRST?
>>HELEN: I GUESS SO.
I WANT TO THANK EVERYONE.
THIS WAS A RICH AND WIDE RANGING
DISCUSSION.
I ESPECIALLY ENJOYED THIS
AFTERNOON, HOW WE FLIPPED
BETWEEN THE SORT OF MORE
PERSONAL, MORE EXPERIENTIAL
DISCUSSION OF THE TOPICS AT HAND
AND THEN THE REALLY WONDERFUL
SCIENTIFIC CONTRIBUTIONS AROUND
DESIGN AND OUTCOME MEASURES AND
TERMINOLOGY AND INFRASTRUCTURE
NEEDS AND SO FORTH.
AND TO ME, I THINK THAT CAPTURED
WHAT WE WERE LOOKING TO HEAR
ABOUT, TO LEARN ABOUT THE LAST
COUPLE OF DAYS.
AND I APPRECIATE EVERYONE'S
CONTRIBUTION.
THIS IS REALLY HARD FOR ALL OF
US TO TALK ABOUT SOME OF THE
TOPICS UNDER DISCUSSION.
BUT I THINK EVERYONE'S COMMENTS,
HOWEVER THEY WERE EXPRESSED,
WERE IMPORTANT FOR THE ENTIRE
COMMUNITY TO HEAR BECAUSE WE ARE
A TEAM, WHOMEVER USED THAT
PHRASE EARLIER.
IN CASE SOMEBODY DOESN'T SAY
THIS, THE WEBINAR WILL BE MADE
AVAILABLE PUBLICLY THROUGH THE
NIDCD WEBSITE.
AND SO WE'LL LOOK OUT FOR THAT
AND I'M SURE WE'LL BE INFORMING
THE COMMUNITY WHEN THAT IS GOING
TO BE AVAILABLE.
THERE WAS SO MUCH TO TAKE IN.
I KNOW I'M LOOKING FORWARD TO
REVIEWING MANY PARTS OF WHAT WE
HEARD OVER THE LAST TWO DAYS.
SO JUST THANK YOU TO EVERYONE.
THIS HAS BEEN A GLORIOUS COUPLE
OF DAYS.
CONNIE?
>>CONNIE: I CONCUR.
A GOOD REVIEW WOULD BE GREAT BUT
NOT TODAY.
LATER.
I JUST WANT TO REALLY THANK
EVERYBODY.
MATHY SAID THIS IS A REALLY
COMPLICATED AND EMOTIONALLY
FRAUGHT TOPIC.
AND I REALLY APPRECIATE
EVERYONE'S ABILITY TO SHARE AND
THEIR COURAGE IN SAYING WHAT WAS
ON THEIR MINDS OR FROM THEIR
EXPERIENCE AND SO ON.
SO I WANT TO THANK EVERYONE FOR
PARTICIPATING.
I THINK IT'S BEEN GREAT.
>>JUDITH COOPER: THANK YOU.
I CAN'T TELL YOU HOW MUCH WE,
THE PLANNERS, APPRECIATE THESE
LAST TWO DAYS.
AND THE SPIRIT WITH WHICH
EVERYONE PARTICIPATED.
I DO WANT TO SAY AS FAR AS NEXT
STEPS, WHAT CAN YOU EXPECT?
LET ME JUST SAY A FEW THINGS.
HELEN DID SAY THAT THE WEBINAR
WILL BE ON OUR WEBSITE BUT IT
WILL ALSO BE UP ON THE NIH
VIDEOCAST WEBSITE UNDER
ARCHIVED.
SO THAT IS WHERE IT WILL LIVE
FOREVER.
AND WHEN WILL IT BE AVAILABLE?
WE HAVE TO DO A LITTLE BIT OF
EDITING, IS MY UNDERSTANDING,
PROBABLY WILL BE MAYBE A WEEK OR
TWO OR SO.
BUT IT'S COMING.
THAT'S ONE THING.
SEVERAL PEOPLE HAVE POINTED NIH
NEEDS TOO.
SO JUDITH ARE YOU LISTENING?
I WANT TO REMIND YOU THAT THERE
ARE FIVE INSTITUTES AT THE NIH
THAT SUPPORT AUTISM RESEARCH.
ONE OF THEM SUPPORTS THE
NATIONAL AUTISM DATABASE.
WE TALKED ABOUT THE DATABASE.
A LOT OF MY COLLEAGUES WERE
LISTENING TO THIS WEBINAR.
SO A LOT OF YOUR IDEAS WILL GO
BACK TO THAT GROUP.
AND THEN I WOULD SAY -- I SAID
AT THE GIPPING THAT WE HAVE
SUPPORTED WORK FOCUSED ON THIS
POPULATION AND ALSO ON
AUGMENTIVE AND ALTERNATIVE.
WE CONTINUE TO.
IF YOU HAVE AN IDEA, COME ON AND
SUBMIT.
ESPECIALLY NEW INVESTIGATORS.
WE ARE READY FOR THE NEW TEAM OF
NEW IDEAS TO COME ONBOARD.
BUT I'M NOT SO NAIVE AS TO THINK
THAT THERE AREN'T SOME BIG
ISSUES THAT WE NEED TO THINK
ABOUT HOW WE MIGHT IMPLEMENT
THOSE.
AND I MIGHT ALSO JUST ADD THAT
WE DO HAVE A NEW NIDCD STRATEGIC
PLAN AND ONE OF OUR LIMITED
GOALS AND THEMES IS ABOUT
TRANSLATIONAL RESEARCH.
SO, WE ARE MOVING IN THAT
DIRECTION TOO.
SO, I HAVE A LOT OF HOPE FOR --
IF WE LOOK DOWN THE ROAD,
ANOTHER 10 YEARS, THAT WE WILL
SEE THAT THIS MEETING LED TO
SOME REALLY IMPORTANT ISSUES.
THANK YOU VERY MUCH FOR YOUR
PARTICIPATION.
[ BACKGROUND NOISE ]
>>IS SOMEONE NEEDING TO SAY ONE
MORE THING?
[ BACKGROUND NOISE ]
>>INGLE ANNA IS NOT ON MUTE.
SHE IS SUPPORTING HER SON IS MY
HYPOTHESIS.
>>SO I WANT TO SAY THANK YOU
AND WE'LL BE IN TOUCH.
>>THANK YOU ALL.