CAN YOU SAY STRING by pengxiuhui

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									>>: CAN YOU SAY STRING?
>>: APPLE.
>>: APPLE.
>>: WHO WANTS ‫﷓ ﷓‬
>>:
>>: THAT IS A VERY IMPORTANT GESTURE, THE GESTURE OF GROWING.
AND THE LADY COMES OVER AND PICKS IT UP AND BRINGS IT DOWN.
AND THE LOVELY LADY COMES AND BRINGS IT TO THEM.
AND BABIES REALIZE THAT IF THEY WANT SOMETHING THEY CAN IN
FACT LOOK.
AND AT THE MOMENT THEY ARE LOOKING AT SOMEONE, THAT'S THE
DAWN OF MIND.
THAT'S THE POINT OF TIME IN WHICH A CHILD REALIZES THAT THAT
ADULT HAS SOMETHING CALLED ATTENTION.
AND NOT ONLY THAT THEY HAVE ATTENTION, BUT YOU CAN DRAW THAT
ATTENTION FOR SOMETHING I WANT AND THEY LEARN TO REQUEST
THINGS BY POINTING TO SOMETHING THEY JUST WANT TO ADULT TO
LOOK AT.
AND AT THE SAME TIME THEY'RE ALSO LEARNING FROM ADULTS
POINTING GESTURES AND SHARING OF EXPERIENCES.
THAT BECOMES THE BASIC BRICK FOR THE BASIC SORT OF PLATFORM
FOR LANGUAGE AND COMMUNICATION.
IN FACT, ONE OF THE BEST PREDICTORS OF LANGUAGE DEVELOPMENT.
NOW, ONE THING THAT WE HAVEN'T TALKED ABOUT BUT BECKY WILL IS
THE ISSUE OF THOSE BEHAVIORS THAT I SHOWED.
NOT ONLY THE REPETITIVE BEHAVIORS BUT THE FACT THAT THEY MAY
PROCESS THE WORLD QUITE DIFFERENTLY.
AND THINGS THAT MIGHT UPSET YOU, THEY MIGHT BE OBLIVIOUS TO
YOU.
AND THINGS YOU MIGHT NOT BE AWARE OF CAN ACTUALLY THROW
THEM OFF.
AND SOME CHILDREN MIGHT BE AFFECTED BY THE HUMMING OF AN AIR
CONDITIONER OR VACUUM CLEANER OR THINGS THAT CAN CREATE A
TREMENDOUS CHALLENGE TO PARENTS BECAUSE THOSE THINGS ARE
NOT PREDICTABLE.
AND THEN THERE ARE ‫﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓﷓ ﷓ ﷓‬
BUT THEN THERE ARE THE CHALLENGES THAT AFFECT OF COURSE THE
MORE INTELLECTUALLY DISABLED OF OUR CHILDREN.
FOR EXAMPLE, SELF INJURY.
IT CAN BE SO PRONOUNCED THAT THEY CAN IN FACT CREATE A
SITUATION IN WHICH THEIR LIFE IS IN JEOPARDY AND THEN ALL SORTS
OF THINGS NEED TO HAPPEN.
AND YET HERE IT IS, OUR CHILDREN ‫﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
BECOME ATTACHED TO PEOPLE DOES NOT NECESSARILY MEAN THAT
THEY DON'T BECOME ATTACHED TO SOMETHING IN THE ENVIRONMENT.
AND SOME OF OUR CHILDREN BECOME ATTACHED TO OBJECTS.
FOR THIS BOY, FOR EXAMPLE, THIS WORLD IS ALL ABOUT BOTTLES.
NOT NECESSARILY BOTTLES OF 7‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓‬
IN A WAY ATTACHMENT IS THERE BUT IT SEEMS TO BE DISPLACED ONTO
THINGS RATHER THAN PEOPLE.
NOW I SAY THAT AND IMMEDIATELY I NEED TO QUALIFY.
IT'S NOT THAT CHILDREN WITH AUTISM DO NOT HAVE EMOTIONS AND
RELATIONSHIPS AND DON'T EVENTUALLY GET CLOSER TO THEIR
PARENTS AND THEY VALUE THOSE RELATIONSHIPS.
IT'S JUST THAT THE PROCESSES ARE QUITE DIFFERENT AND WE NEED TO
UNDERSTAND WHAT THOSE DIFFERENCES ARE.
WHAT CAN WE SAY ABOUT COGNITION?
ABOUT WHEN I CAME INTO THIS FIELD WE WOULD SAY THAT MAYBE 80%
OF CHILDREN ARE AUTISM INTELLECTUALLY DISABLED AND NOW THE
NUMBERS ARE MORE 50‫﷓ ﷓ ﷓ ﷓ ﷓‬
ONE OF THE REASONS IS WE HAVE BECOME MUCH MORE AWARE OF
HIGHER FUNCTIONS INDIVIDUALS AND SO WE ARE IDENTIFYING THEM
AND MUCH MORE OFTEN.
WHAT IS REALLY INTERESTING ABOUT COGNITION IN AUTISM IS THAT
MANY OF OUR CHILDREN SHOW TREMENDOUS AMOUNTS OF DISPARITIES
IN THEIR PROFILES.
AND SOME THINGS THEY CAN DO QUITE WELL AND SOME THEY DO
POORLY.
FOR SOME INDIVIDUALS THIS CAN BE SO EXTREME THAT IT IS, IN FACT,
SORT OF EXPRESSED IN SOME EXCEPTIONAL SKILLS LIKE THIS LITTLE
GIRL WHO USED TO DRAW HORSES OR THIS YOUNG MAN WHO USED TO
DO THE ARCHITECTURAL DRAWINGS.
I HAD A PLEASURE OF WORKING WITH HIM IN A SCHOOL IN ENGLAND
AND HE WAS ALMOST NONVERBAL AT THE TIME HE WAS DRAWING SOME
OF THE ARCHITECTURAL DRAWINGS, SOMETIMES FROM MEMORY AND
SOMETIMES AFTER SEEING THEM.
HERE IS A TEST FOR YOU: TRY TO PAY ATTENTION TO THIS SLIDE VERY
QUICKLY.
WHAT DID YOU SEE?
A COMPUTER, OKAY.
WELL, THIS IS ACTUALLY WHAT YOU SAW.
YOU, YOU KNOW, YOU SAW SOME COOKIES AND SOME CRACKERS.
BUT YOU'RE HOLISTIC BEINGS.
MEANING THAT IMMEDIATELY YOU SEE THE GIST OF THE PICTURE, WHAT
THIS IS ALL ABOUT.
BUT IN MANY DIFFERENT WAYS THE CHILDREN WITH AUTISM TEND TO
GO THE OTHER WAY AROUND: FROM PARTS TO WHOLES RATHER THAN
WHOLES TO PARTS.
IN FACT, THEIR LIVES SEEM TO BE POPULATED BY A LOT OF FRAGMENTS
IN THE WORLD AND IT'S DIFFICULT FOR THEM TO BRING IT INTO
INTEGRATED HOLES.
NOW, IMAGINE THAT LIFE IN PARTICULARLLY SOCIAL LIFE IS SUCH THAT
UNLESS YOU DO THAT YOU GET YOURSELF IN TROUBLE.
BECAUSE YOU MAY GET THIS PIECE OF INFORMATION, THAT PIECE OF
INFORMATION, THAT PIECE OF INFORMATION WITHOUT NECESSARILY
SEEING THE TREE.
THERE ARE TOO MANY LEAVES AND NOT TREES.
CHILDREN IN FACT GO RIGHT TO A RIOT WITHOUT THE ASSUMPTION THAT
A RIOT IS ACTUALLY HAPPENING.
WHAT CAN WE SAW ABOUT THE ONSET OF AUTISM?
FOR THE VAST MAJORITY OF THE CHILDREN WE SHOULD HAVE
IDENTIFIED THEM IN THE FIRST YEAR, TWO YEARS OF LIFE.
AUTISM DOESN'T REALLY HAPPEN AFTER THE AGE OF 3 WITH ONE MINOR
EXCEPTION.
AND THAT IS A CONDITION CALLED CHILD DISINTEGRATED DISORDER.
A LITTLE BIT MORE ABOUT THAT LATER BUT THAT IS A VERY RARE
CONDITION.
THIS IS A SMALL SLIDE FOR MILLIONS AND MILLIONS AND WE HAVE
INVESTED INTO THE RESEARCH AS TO THE CAUSES OF AUTISM.
IF YOU ASKED ME WHAT CAUSES AUTISM, THE ANSWER IS: WE DON'T
KNOW.
WE STILL DON'T KNOW WHAT CAUSES AUTISM.
WE KNOW IT IS A BRAIN DISORDER.
OF COURSE, BECAUSE THERE ARE A MILLION MEDICAL BRAIN SYMPTOMS
THAT ARE ASSOCIATED WITH AUTISM.
FOR ONE, ABOUT 25‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
THERE HAD BEEN A WEALTH OF BRAIN STRUCTURE THAT HAVE BEEN
FOUND BUT WE STILL DON'T HAVE A BIOMARKER.
AND DON'T HAVE SOMETHING THAT'S FULLY SENSITIVE AND SPECIFIC TO
AUTISM.
MEANING SOMETHING THAT'S GOING TO CAPTURE EVERY CHILD WITH
AUTISM.
SO WE STILL DON'T HAVE THAT.
AND THERE ARE SOME CONDITIONS ASSOCIATED WITH AUTISM.
AND PROBABLY THE STRONGEST ONES WE SHOULD BE CONCERN ABOUT
IS THIS.
BUT THOSE CONDITIONS THEMSELVES ARE NOT NECESSARILY HIGHLY
PREVALENT.
I SEE SOME PUZZLED FACES ABOUT MY FIGURE WITH THE 1% FOR FRAJOX.
IT'S THE MOST COMMON LEADING TO MENTAL RETARDATION.
AND THE FACT IS THAT MANY CHILDREN WITH FRAJOX SEEN IN THE
CLINIC MAY RECEIVE A DIAGNOSIS OF AUTISM DEPENDING ON THE
CLINICIAN.
IF WE DO IT THE OTHER WAY AROUND, TAKE CHILDREN WITH AUTISM
AND DO GENETIC TESTING TO FIND OUT WHETHER OR NOT THEY HAVE A
CHROMOSOMAL ABNORMALITY AND A GENE THAT WILL TELL US, THE
PERCENTAGES ARE MUCH MUCH SMALLER.
GENETICS, HOW DO WE KNOW THAT AUTISM IS THE MOST HERITABLE,
MOST STRONGLY GENETIC OF ALL PSYCHIATRIC DEVELOPMENTAL
DISORDER?
THE SCIENCE COMES FROM TWIN STUDIES WHICH WHAT WAS SHOWN
THAT THE CONCORDANCE RATES FOR AUTISM AMONG THE MONO
ZYGOUS TWINS IS CLOSE TO 90% RELATIVE TO THE 5‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
AND THIS TELL US THIS IS INDEED HIGHLY HERITABLE.
BUT IT IS MORE THAN THAT.
WE'RE GOING TO FIND MORE INDIVIDUALS WITH SOCIAL DISABILITY IN
THOSE FAMILIES.
THERE ARE SOME THINGS, HOWEVER, THAT ARE REALLY PUZZLING AND
REALLY INTERESTING: FOR A CONDITION MARKED BY 50‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
INDIVIDUALS WHO HAVE A DEGREE OF MENTAL RETARDATION, IT'S
INTERESTING YOU DON'T FIND IT IN MORE FAMILIES WITH CHILDREN
WITH AUTISM.
AND IT TELLS US THAT IT'S NOT PART OF THE PHENOTYPE THAT WE'RE
TRYING TO UNDERSTAND.
AND ANOTHER SORT OF POINT OF PROGRESS IN THE PAST, SAY, DECADE
OR SO, IS THE NOTION THAT ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
ABOUT THE SM5 AND AUTISM IS NOT NECESSARILY A CONDITION THAT
LENDS ITSELF TO VERY WONDERFULLY CLEAR CATEGORICAL
BOUNDARIES.
WE HAVE LEARNED, FOR EXAMPLE, THAT CHILDREN ARE
DIFFERENTIALLY AFFECTED.
SO, MAYBE THE WORD SPECTRUM IS A GOOD WORD TO USE.
BUT WE SHOULDN'T CONGRATULATE US TOO MUCH ABOUT THIS WORD
EITHER.
WHEN WE TALK ABOUT SPECTRUM, I SEE A SPECTRUM OF LIGHT, WE
KNOW WHAT DIMENSIONS GENERATED THAT SPECTRUM.
WE DON'T KNOW WITH THE AUTISM SPECTRUM.
BUT WE DO KNOW THAT THAT CONDITION GOES BEYOND THE MORE
CONTAINED CLINICAL DIAGNOSIS OF AUTISM.
AND GENETICISTS LIKE TO CALL IT HAVING A DASH OF THE CONDITION IS
SOMETHING THAT WE SEE QUITE OFTEN WITH LARGER FAMILIES.
WHAT CAN WE SAW ABOUT THE PREVALENCE OF THIS CONDITION?
YEARS AND YEARS AND YEARS AGO WITH THE FIRST EPIDEMIOLOGICAL
STUDIES OF THE CONDITION WE USED TO SAY THERE WERE MAYBE FOUR
CHILDREN WITH AUTISM PER 10,000.
NOW‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
PREVALENCE OF THIS CONDITION AT 1 FOR EVERY 150.
SO OBVIOUSLY THERE HAS BEEN AN EXPLOSION OF THE NUMBER OF
CHILDREN WHO ARE IDENTIFIED WITH THIS CONDITION.
THIS IS BASICALLY A SLIDE.
EACH ONE OF THOSE DOTS IS AN EPIDEMIOLOGICAL STUDY AND, OF
COURSE, IT GOES BEYOND 2,000.
SO WHAT IS HAPPENING IN THE FIELD?
IS THERE AN EPIDEMIC?
WELL RICHARD GRINKER WHO IS HERE HAS PUBLISHED A WONDERFUL
BOOK WITH DECONSTRUCTING THE STORY.
SO WHAT I'M GOING TO DO IS SUMMARIZE IT IN 30 SECONDS, OKAY?
AND PEOPLE ARE CONCERNED THAT THERE IS AN EPIDEMIC OF AUTISM
BECAUSE THEY EQUATE THE NUMBER OF CHILDREN IDENTIFIED WITH
INCIDENCE WHICH BASICALLY MEANS NEW CASES.
WHAT ARE POTENTIAL FACTORS INVOLVED IN THAT?
WELL NO. 1: THE VERY DEFINITION OF AUTISM HAS BROADENED
TREMENDOUSLY.
NOW‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓﷓﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
GIVING A TALK.
AND THERE WAS THIS GENTLEMAN FROM ONE OF THE FACULTIES THERE
WHO WAS STOPPING ME ALL THE TIME.
AND HE'S A GENTLEMAN WITH AUTISM.
WE NEVER CONCEIVED OF THAT, YOU KNOW, EVEN 20 YEARS AGO.
WE THOUGHT THAT INDIVIDUALS WITH AUTISM, MOST OF THEM HAVE AN
IQ BETWEEN 50‫﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
THEY DIDN'T, THEY DID NOT HAVE AUTISM.
WE BROADENED THE DEFINITION TREMENDOUSLY, TREMENDOUSLY.
AND WITH ANYTHING IN EPIDEMIOLOGY, IT ALL DEPENDS ON HOW YOU
DEFINE IT.
THE MORE BROADER THE DEFINITION THE MORE PEOPLE YOU'RE GOING
TO FIND IT WITH.
AND NO. 2 WE HAVE FOUND NOT ONLY THE HIGHER FUNCTIONED
INDIVIDUALS BUT ALSO THE SEVERELY AND PROFOUNDLY.
20 YEARS AGO PEOPLE WOULD SAY WE LOVE ARTISTIC CHILDREN.
AREN'T THESE WONDERFUL?
THIS MORNING AT MPR THERE IS A WHOLE THING ABOUT AUTISM.
THERE IS NO SUNDAY EDITION OF THE NEW YORK SOMETIMES WITHOUT
SOMETHING GOING ON.
THE WORLD HAS CHANGED.
AND PARENT SUPPORT ORGANIZATIONS HAS MADE SURE WE ALL HEAR
ABOUT AUTISM.
OBVIOUSLY WE HAVE INCREASED AWARENESS AND THERE WILL BE
MORE PEOPLE IDENTIFIED.
AND SINCE 1975 THE LAW HAS CHANGED.
IT'S AN ENTITLEMENT.
WE DON'T WANT TO MISS CHILDREN BECAUSE THAT LABEL IS, IN FACT, A
KEY FOR SERVICES.
AND OBVIOUSLY MORE CHILDREN ARE IDENTIFIED.
AND ANOTHER THING WHICH IS ONE OF THE MYSTERIES IN
EPIDEMIOLOGY IS WE HAVE CLUSTER CASES IN THE SUBURBS BUT NOT IN
INNER CITIES.
WE WERE JUST TALKING ABOUT THE FACT THAT THERE WAS NO AUTISM
IN CHINA MAYBE 10 YEARS AGO.
AND THINK ABOUT THIS TELLS US SOMETHING ABOUT CAUSATION AND
THERE IS SOMETHING MYSTERIOUS GOING ON.
AND MOST OF THE TIMES THE REASONS ARE QUITE (INAUDIBLE).
IT'S OFTEN THE CASE THAT THE REASONS WHY WE DON'T FIND AUTISM IN
SOME INNER CITIES IS BECAUSE THE FAMILIES ARE STRUGGLING AND
AREN'T VERY GOOD SELF ADVOCATES AND ARE NOT SEEKING SERVICES.
AND NOW WHO ARE COMING TO US VERY MUCH WHAT KENNER FOUND
OUT WITH HIS FIRST 11 CHILDREN, THOSE WHO HAVE THE ABILITIES TO
COME.
SO, WHAT WE FIGURE OUT IS THAT THERE WAS TREMENDOUS TERTIARY
LIKE OURS.
WHEN WE STARTED TO DO OUTREACH AND POPULATION‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
SCREENING OF AUTISM AND WE REALIZED THAT, GEE, THE NUMBERS ARE
SO MUCH LARGER.
AND THERE ARE A LOT OF FOCUS FACTORS THAT ACCOUNT FOR THE
EXPLOSION OF THE NUMBERS OF PEOPLE IDENTIFIED.
AND YET WHAT PARENTS ARE REALLY INTERESTED IN AND LOTS OF
MOVEMENTS THAT ARE VERY VOCAL IN SOCIETY.
SO IN 25 SECONDS IS THERE AN EPIDEMIC GOING ON?
WE DON'T HAVE THE DATA TO ANSWER THAT QUESTION BUT THERE ARE
MANY FACTORS ACCOUNTING FOR THE LARGER NUMBERS OF
INDIVIDUALS THAT ARE IDENTIFIED.
NOW WITH I GUESS OVER 40 TEEN STUDIES WORLD‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
REPORTS FROM THE NATIONAL ACADEMIES OF SCIENCE WE CAN, YOU
KNOW, WITH 99% OF CONFIDENCE THAT AUTISM IS NOT ASSOCIATED
WITH VACCINATION.
NOR IS IT ASSOCIATED WITH THE PRESERVATIVES USED IN VACCINATION.
SO, IT'S A ‫﷓ ﷓﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
PARENTS WITH DRAWING CHILDREN FROM PROGRAMS.
AND YOU SHOULD TELL EVERYBODY THAT 3 OF THE DISEASES THAT
CHILDREN ARE VACCINATED FOR AT THE AGE OF 13, 14, 15 MONTHS,
MEASLES, MUMPS OR RUBELLA ARE VERY IMPORTANT.
IT CAN LEAD TO MENTAL RETARDATION AND DEATH.
AND I DON'T HAVE THAT SLIDE HERE, BUT IT IS QUITE ILLUSTRATIVE
THAT THIS WHOLE CRAZINESS ABOUT VACCINATION BEGAN IN BRITAIN
AND YEARS LATER WE SAW AN INCREASE IN NUMBER OF CASES OF
MEASLES IN THE U.K. BECAUSE PARENTS ARE WITH DRAWING THEIR
CHILDREN FROM VACCINATION PROGRAMS.
THIS IS A TOUR DEFORCE QUICKLY WHAT AUTISM IS ABOUT.
I COULD GO ON AND I COULD DESCRIBE TO YOU THE DIFFERENT SPECIFIC
CATEGORICAL SYNDROMES LIKE CHILD DISINTEGRATED DISORDER AND
RETT SYNDROME PROBABLY IS NOT.
RETT SYNDROME IS ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓‬
MENTAL DISORDER.
AS A CHILD PSYCHIATRIST ONCE SAID BECAUSE HE NEEDED TO BE
SOMEWHERE.
BUT IT AFFECTS ONLY GIRLS AND THEY HAVE NORMAL DEVELOPMENT
MAYBE FOR THE FIRST MONTHS OF LIFE.
AND BEFORE YOU KNOW, BAD THINGS ARE HAPPENING.
THERE IS DECELERATION OF HEAD GROWTH. AND THESE ARE GIRLS THAT
MANY OF THEM BECOME QUITE FRAIL AND ARE SEVERELY MENTALLY
RETARDED OR SOME OF THEM ANYWAY ARE SEVERELY PROFOUNDLY
MENTALLY RETARDED AND THAT CATEGORY WAS INCLUDED IN THE
PERVASIVE MENTAL DISORDERS, THIS CLASSIFICATION OF EARLY ONSET
BECAUSE SOME PEOPLE WERE CONFUSING THEM WITH GIRLS WITH
AUTISM.
NOW WE KNOW THE GENE THAT CAUSES IT, 95% OF THE TIME IT'S A
CHANCE EVENT.
NOT HERITABLE IN THAT SENSE.
IT'S PROBABLY BETTER DEFINED AS MENTAL RETARDATION SYNDROME.
LET ME STOP HERE.
WE WILL HAVE AN OPPORTUNITY TO ANSWER QUESTIONS.
AND I HOPE THAT I TOUCHED ON SOME OF THE SORT OF MAJOR THEMES.
AND WE'RE GONNA TALK A ‫ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓‬SSMENT.
WE'RE NOT BREAKING, KERRY, YOU WANT ME TO GO STRAIGHT AHEAD?
>>: (INAUDIBLE).
>>: OKAY.
>>: WONDERFUL.
>>: I HOPE YOU HAVE THE STAMINA FOR THAT.
SO, CHANGING GEARS.
THERE IS A MESSAGE THAT I HOPE YOU GOT FROM MENTIONING IT TO
YOU IS THAT EXPRESSION OF THE CONDITION.
IF SO, IF SOME OF YOU ARE ASKING ME, DR. KLIN I HAVE A 5 YIELD WITH
PERVASIVE BEHAVIORAL DISORDER NOT SPECIFIED AND THERE IS A
RESIDUAL CONDITION IN THIS FIELD BASICALLY.
AND THE MOST PREVALENT OF ALL FORMS OF AUTISM JUST BECAUSE IT'S
A CLOSE BUT NO SIGAR FORM OF SYNDROME.
IF A PARENT CALLS ME I HAVE A 5 YIELDS WITH PBNOS.
WHAT SHOULD I DO?
MY ANSWER SHOULD BE: I DON'T HAVE A CLUE!
AND, OF COURSE, I WOULDN'T USE THIS LANGUAGE WITH THE PARENT.
BUT THE REASON WHY I SAY THIS IS BECAUSE THE LABELS, THEY ARE
NOT SUFFICIENTLY DETAILED TO GIVE US THE DIRECTIVES FOR AN
INTERVENTION PROGRAM.
THE VARIABILITY IS SO TREMENDOUS THAT WE NEED TO GO MUCH
BEYOND THOSE LABELS.
PROGRAMS, THEY ARE APPROPRIATE IF THEY ADDRESS A CHILD'S NEEDS
WHILE CAPSULIZING ON THE STRENGTHS.
HOW DO YOU FIND THE NEEDS AND STRENGTHS?
YOU DO SO BY CONDUCTING A CLINICAL EVALUATION.
EVERYTHING WE DO IN THE CLINICAL EVALUATION NEEDS TO BE
TRANSLATED.
ALL OF THE MEASUREMENTS, IN FACT, ARE SUPPOSED TO BE
TRANSLATED INTO INSIGHTS THAT ARE GOING TO TELL THE SPECIAL
EDUCATOR, ALL PROFESSIONALS WORKING WITH THE CHILD MONDAY
MORNING WHEN THEY SAY SALLY COMING IN THE DOOR WHAT TO DO.
WHEN WE THINK OF WHAT WOULD BE IN EVERY ASSESSMENT.
WE NEED TO CONSIDER WHAT ARE THE GREATEST CHALLENGES FOR THE
KIDS?
FIRST AND FOREMOST THERE ARE THINGS IN LIFE THAT OBVIOUSLY WE
NEED TO ASSESS SOCIAL SKILLS. AND NOT ONLY IN THE INDIVIDUALS
THAT ARE SO ISOLATED THAT BASICALLY THEY'RE NOT RELATING WITH
ANYONE.
BUT ALSO FOR THOSE WHO HAVE SOCIAL MOTIVATION.
THEY ARE INTERESTED IN OTHERS.
BUT COMMUNICATION IS BREAKING DOWN BECAUSE THEY DON'T DO SO
FLEXIBLY.
WE ARE INTERESTED IN COMMUNICATION SKILLS BECAUSE WE NEED TO
MAKE SURE THAT OUR CHILDREN ARE CAPABLE OF NAVIGATING SOCIAL
LIFE.
AND YOU CAN'T DO THAT WITHOUT SPEAKING WITH OTHERS AND
CONVEYING TO OTHERS HOW WE FEEL AND WHAT DO WE WANT?
THIS IS A CRITICAL ASPECT OF CHALLENGES OF ADAPTIVE OR REAL LIFE
SKILLS.
CALLED STREET SMARTS.
THERE IS AN ENORMOUS DISCREPANCY BETWEEN OUR CHILDREN'S
INTELLECTUAL ABILITY AND POTENTIAL AND TO TRANSLATE IT TO LIFE
SKILLS.
IT DOESN'T MATTER IF THAT CHILD HAS A CUE OF 40 OR 140, THAT
DISCREPANCY STILL IS GOING TO BE THERE.
AND BECAUSE WE SEE SO MANY ADULTS WITH THIS CONDITION THAT
DESPITE THE TREMENDOUS AMOUNT OF TALENT STILL LIVES WITH MOM
AND DAD BECAUSE THEY CAN'T LIVE INDEPENDENTLY.
WE KNOW NOW THAT THIS IS ONE OF THE CRITICAL PRIORITIES FOR ANY
EDUCATIONAL PROGRAM: WE NEED TO TEACH CHILDREN HOW TO MEET
THE DEMANDS OF EVERYDAY LIFE.
AND WE ALSO KNOW OUR KIDS ARE QUITE DISORGANIZED.
THE HIGHER FUNCTIONING ONES MAY HAVE A TON OF INFORMATION IN
THEIR MINDS AND FAIL TO DO HOMEWORK BECAUSE THEY DON'T KNOW
WHERE TO START.
IT IS DIFFICULT TO GET A TASK THAT IS TOO CONCEPTUAL OR ‫﷓ ﷓ ﷓‬
COMPLEX AND COME UP WITH A STEP‫ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬VE
IT AND KEEP IT IN THEIR MINDS HOW TO GO AND GO STEP BY STEP BY
STEP IN ORDER TO EXECUTE THAT TASK.
SO, ORGANIZATIONAL SKILLS ARE CRITICAL FOR THE OLDER ADULT.
AND FOR THE LITTLE ONES MORE INTELLECTUALLY CHALLENGED THEY
HAVE DIFFICULTY.
IN A WAY THEY DON'T HAVE A PROCESS ON HOW TO LEARN TO LEARN.
AND WE NEED TO TEACH THEM.
THEY ARE NOT THERE SUFFICIENTLY ON THAT TABLE TO CREATE THE
CYCLE OF LEARNING BECAUSE THEIR MINDS ARE SO DISTRACTABLE.
AND THEY'RE NOT QUITE CAPABLE OF BEING ENGAGED BY THE OTHER ON
A PARTICULAR GIVEN TASK. AND THEN, OF COURSE, THERE ARE ALL OF
THE COMORBIDITIES OR THINGS THAT ARE NOT NECESSARILY CORE OF
THE DISORDER BUT THEY IMPACT ON THE CHILD'S ABILITY TO
PARTICIPATE IN SCHOOL ACTIVITIES IN ALL FORMS OF INTERVENTION.
FOR THE OLDER INDIVIDUALS THE MOST COMMON COMORBIDITIES ARE
ANXIETY AND DEPRESSION.
ANXIETY BECAUSE THEY DON'T HAVE ANY SENSE OF WHAT'S GOING TO
HAPPEN NEXT.
IT'S LIKE WALKING ON EGG SHELLS ALL DAY LONG.
THEY ARE EXHAUSTED WHEN THEY COME HOME BECAUSE THEY DON'T
HAVE INTUITION AS TO WHAT IS HAPPENING IN OTHER PEOPLES' MINDS.
REMEMBER THAT MOST OF US ARE ENTIRELY OBSESSED ABOUT OTHER
PEOPLES' THOUGHTS AND INTENTIONS AND MOTIVATIONS AND SO FORTH.
FOR OUR KIDS THIS IS JUST NOT THERE.
THEY'RE NOT PAYING ATTENTION TO THAT.
AND FOR THEM, THOSE THINGS ARE A BIG PUZZLEMENT.
AND BEING PUZZLED ALL DAY LONG MAKES FOR A VERY ANXIOUS CHILD.
THE SECOND MOST COMMON IS DEPRESSION.
AS THEY GROW OLDER, THEY ACTUALLY WISH TO MAKE CONTACT WITH
OTHERS.
THEY WANT TO ESTABLISH RELATIONSHIPS BUT THEY JUST DON'T KNOW
HOW.
AND BECAUSE OF THOSE REPEATED EXPERIENCES SOON ENOUGH MANY
OF THE CHILDREN HAVE A SENSE OF DEPRESSION.
TO THE EXTENT THAT THEY MAY REFUSE TO GO TO SCHOOL.
THE FACT THAT THEY HAVE MOTIVATION FOR ANYTHING AT ALL.
SO IT CAN BE A VERY CRITICAL THING FOR US TO BE CONCERNED ABOUT.
NOW, OF COURSE, FOR THE LOWER MORE CHALLENGED CHILDREN, THERE
IS A WHOLE ASSORTMENT OF COMORBIDITIES THAT CAN IMPACT
WHETHER OR NOT THEY CAN BE IN A SCHOOL ENVIRONMENT OR NOT.
OR SELF AGGRESSION OR SELF INJURY OR BEHAVIOR AND ALL OF THOSE
THINGS THAT CAN BE EXTRAORDINARY CHALLENGES FOR US.
SO WITH THAT IN MIND, WHAT DO WE DO WHEN WE ARE CLINICALLY
EVALUATING A CHILD?
NO. 1, WE PUT A LOT OF FOLKS TOGETHER.
IT'S CRITICAL BECAUSE THESE CHILDREN HAVE STRENGTHS AND
DEFICITS IN MULTIAREAS.
AND THERE IS A TRANSDISCIPLINARY TEAM.
THERE IS A GROUP OF PEOPLE WITH EXPERTISE IN MULTIPLE DIFFERENT
AREAS WHO COME TOGETHER IN ORDER TO UNDERSTAND THE CHILD.
IT'S CRITICAL THERE WE DON'T COME UP WITH ISOLATED VIEWS OF THE
CHILD. AND THAT'S WHY WE CALL IT TRANSDISCIPLINARY IN MANY
WAYS, WE'RE CONTRIBUTING TO THE CHILD.
AND TALKING TO THE PARENTS IT'S CRITICAL TO HAVE A COHERENT
VIEW OF THE CHILD.
NOT MULTIPLE VIEWS NOT WHAT THE PSYCHOLOGIST OR THE SPEECH
LANGUAGE PATHOLOGIST SAID OR THE CHILD PSYCHIATRIST.
WE BRING IT ALL TOGETHER IN ORDER TO CONVEY A COHERENT SORT OF
VIEW OF THE CHILD.
NOW, IT'S VERY TOUGH TO EVALUATE CHILDREN WITH AUTISM.
WHY?
THEY COME IN ALL SHAPES AND FORM.
IN MANY DIFFERENT WAYS WE NEED TO BE PREPARED TO SEE CHILDREN
WHO CAN BE SEVERELY PROFOUNDLY MENTALLY RETARDED TO
INDIVIDUALS WHO ARE EXTRAORDINARILY BRIGHT.
INDIVIDUALS WHO CAN BE 15 MONTHS OLD LIKE THE LITTLE GIRL YOU
SAW TO ADULTS.
IN FACT, WE'RE SEEING MORE AND MORE ADULTS THESE DAYS.
TYPICALLY HIGHER FUNCTIONING ONES BECAUSE THERE ARE SO MANY
THAT LIVED A LIFE UNIDENTIFIED WITHOUT KNOWING THEY HAD A
PROBLEM AND FEELING MISERABLE ABOUT THE KINDS OF CHALLENGES
THEY LIVE EVERYDAY.
A CLINIC LIKE OURS, WE HAVE TO HAVE A VERY VERY LARGE BAG OF
TRICKS.
TRICKS APPLICABLE TO BABIES AND ADULTS.
AND CLINICIANS NEED TO HAVE THE RANGE OF EXPERIENCE.
BECAUSE IF YOU DON'T, IF YOU HAVE NEVER SEEN ADULTS WITH AUTISM.
IT'S VERY TOUGH FOR YOU TO TALK TO PARENTS OF 2 AND 3 AND
4‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
ABOUT THE CHALLENGES THE 2‫﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
ADULTHOOD.
FOR US, THE NOTION IS TO HAVE A SENSE OF THE CONDITION LIFE SPAN.
NOW, WHAT DO WE DO?
I'M NOT GONNA TELL YOU EVERY SINGLE THING THAT NEEDS TO HAPPEN
IN THE CLINICAL EVALUATION.
BUT I NEED TO TELL YOU THE THINGS WE CANNOT DO, OKAY?
PRINCIPLE NO. 1: BECAUSE CHILDREN WITH AUTISM CAN PRESENT IN THE
CLINIC VERY DIFFERENTLY FROM THE WAY THEY ARE IN THE OTHER
WORLD, WE HAVE TO HAVE PARENTS.
THEY ARE CRITICAL TO PROVIDE US INFORMATION AND THEY CAN
PROVIDE US WITH VALID INFORMATION.
WE NEED TO MAKE SURE TO ENSURE THAT THEY'RE REPRESENTATIVE OF
THE WAYS THE CHILD IS IN THE SUPERMARKET AND THE PLAY ROOM AND
OTHER ENVIRONMENTS REPRESENTATIVE OF THE CHILD'S LIFE.
THIS IS NO. 1.
AND NO. 2, YOU CAN FIND THEIR WEAKNESSST.
IT'S CRITICAL FOR US TO ALSO FIND THEIR STRENGTHS.
REMEMBER THAT AN APPROPRIATE PROGRAM, CAPITALIZE ON THE
CHILD'S STRENGTHS.
AND AS WE ARE TALKING ABOUT THIS, WHY DO WE DO THOSE
ASSESSMENTS?
REMEMBER THAT PARENTS COME TO US WITH A CONCERN ABOUT THEIR
CHILD BUT THEY MIGHT NOT NECESSARILY HAVE A ROAD MAP OF WHAT
THEY NEED TO DO THE NEXT DAY.
IT'S CRITICAL FOR PARENTS TO UNDERSTAND THE REASON FOR THE
EXPERIMENTS IS TO EMPOWER THEM TO THEN CONTACT THEIR LOCAL
SCHOOL DISTRICTS AND ENGAGE THEM WITH WHAT IS GOING TO BE THE
EDUCATIONAL PLAN WHICH AS YOU KNOW THE GOVERNMENT HAS
MANDATED TO PROVIDE TO SERVICES WITH CHILDREN WITH
DISABILITIES INCLUDING CHILDREN WITH AUTISM.
AND THAT DOCUMENT AND EDUCATIONAL PLAN IS GOING TO SAY WHAT
ARE HER NEEDS AND STRENGTHS AS WELL AS THE KINDS OF
INTERVENTIONS THAT MAKES SENSE.
AND THE LAW SAYS THAT INTERVENTIONS SHOULD BE APPROPRIATE.
BUT NOT DEFINED WHAT APPROPRIATE IS.
APPROPRIATE IS BASICALLY SOMETHING THAT WE, CLINICIANS, PARENTS
AND EDUCATORS NEED TO COME TOGETHER AND DECIDE ON WHAT TO
DO.
AND WHAT IS APPROPRIATE IS WHAT IS AN INDIVIDUALIZED?
AND MORE ON THAT WHEN BECKY TALKS ABOUT TREATMENT.
ONCE WE HAVE DONE OUR CLINICAL EVALUATIONS WE THEN HAVE A
LOT TO DO.
WE WILL MONITOR THE CHART AND HAVE EMPIRICAL WAYS OF
PROGRESS SO WE CAN UPDATE THAT PROGRAM.
WHAT DO WE DO IN THE FIELD?
FOR PSYCHIATRISTST AND PARTICULARLY DON'T HAVE THAT AND DON'T
THINK OF THE COMPONENT, THE FIELD OF AUTISM REQUIRES
DOCUMENTATION OF THE FIRST YEARS OF LIFE.
IT'S A NEURODEVELOPMENTAL DISORDER.
YOUR LIFE WILL BE MUCH EASIER IN YOUR DIFFERENTIAL DIAGNOSIS IF
YOU'RE CAPABLE OF DIFFERENTIATING THING 2.
A LOT OF THE PROCESSES PARTICULARLY FOR THE HIGHER FUNCTIONS
OF AUTISM, HOW IS IT DIFFERENT FROM OBSESSIVE COMPULSIVE
DISORDER AND PERSONALITY DISORDERS AND A WHOLE ASSORTMENT
OF DISORDERS?
THESE ARE DEVELOP MENTAL DISORDERS, EVEN IF CHILDREN WERE NOT
FOUND OUT EARLIER, THEY SHOULD HAVE AND SHOULD HAVE LEFT
TRACES IN THEIR SCHOOL DOCUMENTATION, OKAY?
HOW DO WE GET THOSE HISTORIES ? WELL, WE ASK PARENTS.
WE MAY DO SO IN AN ASSORTMENT OF WAYS.
BUT IN THE FIELD OF AUTISM WE HAVE BEEN BLESSED WITH THE
DIFFICULTY IN DOING THE ASSESSMENT.
AND YEARS AGO WHEN PEOPLE START TO CREATE THE GENETIC
CONSORTIA, THEY HAVE TO COME UP WITH A STANDARDIZED WAY OF
DOING THE DIAGNOSIS.
AND THE FIRST THING THAT CAME ABOUT WAS A SEMISTRUCTURED
INTERVIEW CALLED THE AUTISM DIAGNOSTIC INTERVIEW WHICH IS A
WAY OF MAKING SURE THAT THE MULTITUDE OF CENTERS ARE A PART
OF A GENETIC CONSORTIUM IN BRITAIN THAT EVERYBODY DID A
DIAGNOSIS THE SAME WAY OR THE DIAGNOSTIC PROCESS.
THE INTERVIEW WHICH IS A SEMISTRUCTURED INTERVIEW.
IT'S NOT LIKE INTERROGATION.
IT'S A CLINICAL INTERVIEW THAT NEED TO BE DONE BY NOT ONLY
PEOPLE THAT KNOW THE CONDITION BUT THE INSTRUMENT ITSELF.
WE ASK BROAD QUESTIONS FROM PARENTS, THEY GIVE US INFORMATION.
BECAUSE WE ARE TRAINED IN THE INSTRUMENTS AND KNOW WHAT THE
RATES CRITERIA ARE, WE EXPLORE THE ANSWERS UNTIL WE FIND
SPECIFIC BEHAVIORS THAT ALLOW US TO QUANTIFY MULTIPLE
DIFFERENT AREAS OF THE CHILD'S DEVELOPMENT BUT IT IS IN
SOCIALIZATION, SPEECH LANGUAGE OR COMMUNICATION.
AND OTHER BEHAVIORS.
IF YOU DO SO, IF YOU DO SO, YOU HAVE A QUANTIFIED MEASURE OF THE
CONDITION.
YOU HAVE A HISTORICAL MEASURE OF THE CONDITION AND THERE IS A
SPECIFIC ALGORHYTHM THAT YOU FOLLOW IN ORDER TO MAKE THE
DIAGNOSIS BASED ON PARENTAL INFORMATION.
NOW NEEDLESS TO SAY THAT IN THIS FIELD WE NEED TWO THINGS:
PARENTAL INFORMATION GOES HAND IN HAND WITH (INAUDIBLE).
I THINK BECKY'S GOING TO TALK ABOUT DIRECTIVIZATION.
THAT'S WHAT WE CLINICIANS DO WHEN WE INTERACT WITH CHILDREN
AND THERE ARE STANDARDIZED MEASURES FOR THAT.
IT IS CRITICAL FOR YOU TO KNOW THE DIFFERENCE BETWEEN A
SCREENER AND A DIAGNOSTIC INSTRUMENT.
THERE ARE 40 OR 50 SCREENERS FOR AUTISM.
THEY'RE GREAT.
AND FOR PEDIATRICIANS TO USE WHEN CHILDREN ARE GROWING.
AND THEY'RE HELPFUL FOR EPIDEMIOLOGICAL STUDIES.
THEY DON'T EQUATE TO DIAGNOSE SIS YET THAT THE WAY THAT
SOMETIMES PEOPLE DO SO.
THEY DO SO IN THEIR CLINICS AND THEY DO SO IN THEIR RESEARCH
PROTOCOLS, OKAY?
IN THIS FIELD WE CANNOT DO AWAY WITH DIAGNOSTIC
CHARACTERIZATION AND, YOU KNOW, THERE ARE NO SHORTCUTS
THERE.
THE ADI IS, YOU KNOW, EASILY A 1 AND A HALF INTERVIEW WITH
PARENTS.
HISTORY, SECOND, PSYCHOLOGICAL ASSESSMENT.
VERY BRIEFLY, WHY DO WE NEED TO HAVE A SENSE OF PSYCHOLOGICAL
FUNCTIONING?
MOST OF ALL, INTELLECTUAL ABILITIES?
BECAUSE CHILDREN CAN BE HERE OR THEY CAN BE HERE.
IF A CHILD'S INTELLECTUAL POTENTIAL IS HERE, THIS IS THE AMOUNT OF
FRUSTRATION AND ANXIETY AND PROBABLY AGGRESSION THAT WE ARE
INSTILLING IN THE CHILD.
ON THE OTHER HAND IF THE CHILD IS HERE AND WE'RE TEACHING OTHER
OVER HERE, IN OUR FIELD WE NEED A MEASUREMENT OF INTELLECTUAL
POTENTIAL.
THAT WAY WE CAN CONTEXTUALIZE EVERYTHING WE DO RATHER THAN
THE SPEECH LANGUAGE, COMMUNICATION, ABILITIES AND DISABILITIES.
IT IS FOR US TO HAVE A CLEAR SENSE OF WHERE TO START.
AND BELIEVE ME, YEARS AGO WHEN PEOPLE BELIEVED THAT WE CAN
NOT HAVE A VALID ASSESSMENT OF INTELLECTUAL FUNCTIONING,
CHILDREN WITH AUTISM, ALL SORTS OF BAD THINGS HAPPENING.
IN AUTISM THERE ARE A NUMBER OF WACKY TREATMENTS AND ONE OF
THE REASONS WHY WE HAVE SO MANY IS PEOPLE TRY TO WISH AWAY
INTELLECTUAL DISABILITY.
AND TRAGIC THINGS HAPPEN WHEN YOU DO SO.
SO THIS IS A REALLY CRITICAL ASPECT OF WHAT WE DO.
NOT ONLY TO HAVE THAT AVERAGING OF INTELLECTUAL SKILLS
BECAUSE OF INCREDIBLE DISCREPANCY WE SEE IN THE CHILDREN.
WE ALSO NEED THEIR PROFILE AND WHAT ARE THE THINGS THAT WE CAN
BUILD ON AND WHAT ARE THE THINGS WE NEED TO AVOID OR ADDRESS?
HISTORY, PSYCHOLOGICAL ASSESSMENT, REAL‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
I CANNOT BEGIN TO STRESS TO YOU THE IMPORTANCE OF THIS
MEASUREMENT.
I WAS ONCE ASKED BY SOME FOLKS IN ONE DEVELOPING COUNTRY, WE
DON'T HAVE ANY INSTRUMENTS TO USE IN ORDER TO HELP CHILDREN
WITH AUTISM HERE.
WHAT YOU BELIEVE IS THE INSTRUMENT THAT IS MAKING THE GREATEST
IMPACT ON THE LIVES OF CHILDREN?
THAT'S THE BEHAVIOR SCALES WHICH IS A MEASURE OF REAL‫﷓ ﷓ ﷓﷓ ﷓ ﷓‬
SCALES.
WHY IS IT SO CRITICAL?
BECAUSE OUR DAILY LIVES ARE LIVED ON THE BASIS OF INTERACTING
WITH OTHERS AND TAKING CARE OF OURSELVES AND TOILETTING SKILLS
AND GROOMING ABILITIES AND SO ON.
STOP FOR A MOMENT AND THINK ABOUT EVERYTHING THAT YOU DID
TODAY AND YOU DID IT NATURALLY WITHOUT THINKING AND YET
THOSE KINDS OF DAY‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
EXPLICITLY IN THE SCHOOLS ARE DEGRADED CHALLENGES FOR OUR
CHILDREN.
THIS IS JUST A TINY LITTLE EXAMPLE.
YEARS AGO WE USED TO BE PART ‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
PART OF OUR GROUP.
WHAT WAS THE BATTERY OF ASSESSMENT TO USE IN THE
COLLABORATIVE PROJECTS IN AUTISM?
VIOLENCE?
WHY DO IT WITH CHILDREN WHO NOT PART OF IT?
THEY HAVE TO HAVE ADAPTIVE SKILLS MEASURE BECAUSE IT'S PART OF
IT.
WHY MEASURE THOSE WITH AUTISM WHO ARE NOT MENTALLY
RETARDED?
WELL, THAT'S THE REASON.
THIS IS JUST A SAMPLE OF 115 HIGHER FUNCTIONING INDIVIDUALS WITH
THE AUTISM SPECTRUM OF DISORDERS.
AND THEY ARE SORT OF RANGING FROM 8‫﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
THAT IS HIGHER THAN ABOUT, YOU KNOW, 53% OF THE POPULATION.
REAL‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AGE EQUIVALENTS WERE 3 AND A HALF, 4.
ONE SAMPLE FROM NEW HEAVEN AND ONE FROM MINNESOTA, MICHIGAN
‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
DOES THAT MEAN THEY ARE LIKE CHILDREN?
THEY ARE NOT.
MANY OF THEM HAVE BODIES OF MUCH OLDER INDIVIDUALS BUT THEIR
STREET SMARTS ARE SO BAD IF I LEFT THEM IN THE BAD PART OF NEW
HAVEN HE WOULD SURVIVE AS LONG AS AN INDIVIDUAL CAN AGE.
THOSE ARE THE STREET SMARTS AND THOSE ARE THE NUMBERS WE
HAVE TO CONVEY TO THE SCHOOLS AND FOCUS ON IN THE
INTERVENTION PROGRAMS.
WHAT DID WE DECIDE BECKY?
YOU TALK ABOUT THAT?
I TALK ABOUT THAT?
I TALK ABOUT THAT.
I COULD GO ON AND ON AND ON AND ON.
BUT I KNOW THAT I'VE ALREADY EXCEEDED MY TIME SO HERE IT IS.
THREE MINUTES ON DIRECT INTERRUE WITH OUR PATIENTS.
‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓‬
THE OTHER THING YOU NEED TO KNOW ABOUT THIS: THE WORST
POSSIBLE WAY OF INTERACTING WITH PATIENTS WHETHER 15 MONTHS
OR 15 YEARS OF AGE IS COMING THERE AND INTERVIEWING THEM.
MANY PRESENT THEMSELVES WELL.
WHEN WE'RE ASSESSING AUTISM WE'RE BASICALLY NOW SAMPLING
THEIR AUTISTIC SYMPTOMOLOGY.
THE BEST WAY TO DO THAT IS RELAXING AND TAKING A STEP BACK AND
OBSERVING THE WAY THEY ARE SHAPING THAT SITUATION.
ONE OF THE THINGS THAT HAPPEN WITH OUR CHILDREN IS THEY MAY
RESPOND VERY WELL TO, YOU KNOW, WHAT'S YOUR NAME AND AGE AND
SO FORTH.
BUT IF THERE ARE PEOPLE IN THE ROOM THEY DON'T KNOW WHAT TO DO
WITH THEMSELVES AND REPAIR.
WITH LITTLE CHILDREN IT PAYS TO COME IN THE ROOM AND EXPLORE
THE WORLD.
ARE THEY GRAVITATING TO REPRESENTATIONAL TOYS?
OR GOING BACK AND FORTH AND BACK AND FORTH?
WHEN I AM INTERACT WITH A CHILD AND I LOOK SOMEWHERE THERE
BECAUSE SOMETHING REALLY INTERESTING IS HAPPENING THERE, IS THE
CHILD FOLLOWING ME?
YOU KNOW, ONE OF THE GREATEST AVENUES AND SHORT CUTS THAT
BABIES, LITTLE CHILDREN LEARN ABOUT THE WORLD IS THAT THEY
BASICALLY LEARN THE MEANING OF SOMETHING THAT HAPPENS THERE
THROUGH THE REACTION OF THE ADULTS.
THIS IS CALLED SOCIAL REFERENCING.
IS THE CHILD LEARNING IN THAT WAY?
AM I ABLE TO DISPLACE A CHILD'S ATTENTION ELSEWHERE?
ARE WE ACTUALLY SHARING THE SAME EXPERIENCE?
ONCE THE CHILD IS INTERACTING WITH ME, IS HE OR SHE INTERACTING
WITH SOMETHING THAT ACTUALLY THERE IS A PERSON BEHIND?
IF I AM BLOWING A BALLOON AND THE CHILD LIKES THAT ACTIVITY AND
I STOP DOING SO, HOW IS THE CHILD GOING TO REQUEST FOR ME TO DO IT
AGAIN?
SOME CHILDREN MAY GO AND PUSH YOUR CHEEKS BACK AND FORTH,
BACK AND FORTH, AND THEY'RE USING YOU AS A TOOL.
THAT'S NOT THE WAY THINGS HAPPEN.
IN MANY WAYS WHAT WE TRY AND DO IS CREATE A NATURAL SOCIAL
INTERACTION TO MAKE THOSE OBSERVATIONS.
THAT'S OUR VERY BEST BET.
AND WHAT ABOUT WITH THE OLDER INDIVIDUALS?
SAME THING.
AND IT'S OKAY WHEN WE ARE CONDUCTING TO BASICALLY PUT A WHOLE
MINDFUL IN FRONT OF OUR CHILDREN BECAUSE THAT'S WHAT THE PEERS
ARE DOING.
SOMETIMES I HAVE A CHILD THAT COMES TO ME.
I LIKE PETS.
WE TOO.
IN FACT, I HAVE 12 DOGS, 6 CATS AND A PET WHALE AT HOLE.
JUST LIKE YOU, A REACTION.
I JUST SAID A PET WHALE!
I CAN SEE WHETHER THEY'RE IN FACT WITH ME OR NOT.
SOME SAY YOU CANNOT HAVE A PET WHALE BECAUSE IT'S A LARGE
ANIMAL AND YOU'RE A PSYCHOLOGIST.
YOU PROBABLY WOULDN'T HAVE ENOUGH MONEY TO FEED IT.
[CHUCKLING]
THE IDEA IS THE CHILD MISSED THE POINT THAT IT WAS A STATEMENT OF
FACT.
WE DO ALL OF THESE SORT OF THINGS IN ORDER TO GET TO SAMPLE
SYMPTOMOLOGY THAT ARE STANDARDIZED WAYS OF DOING THE
INTERVIEWS OR PLAY STATIONS.
THE BEST BET IS THE DIAGNOSTIC INTERVENTION SCHEDULE.
YOU NEED TO BE TRAINED AND EXPERIENCED ON IT.
IT'S NOT A BLOOD SAMPLE, IT'S NOT!
THE NOTION THAT YOU CAN HAVE AN INEXPERIENCED PERSON TO HELP
IS A MYTH.
THOSE INSTRUMENTS ARE AS GOOD AS THE PERSON ADMINISTERING IT,
OKAY?
WE ARE FAR AWAY FROM HAVING ANY BLOOD SAMPLES FOR AUTISM.
WE REQUIRE EXPERIENCED CLINICIANS TO CHARACTERIZE THEM.
WHETHER THAT CHARACTERIZATION IS FOR THE PURPOSE OF CLINICAL
SERVICES OR CHARACTERIZING PHENOTYPE FOR GENOTIPPIC RESEARCH.
AND IN FACT YOU KNOW TWO MORE SECONDS BECAUSE I WAS ASKED
SOMETHING VERY VERY SPECIFIC AND YES, I DO.
CAROL.
SO JUST A QUICK SEC HERE AND THEN I WILL BE GOLDEN.
THIS.
COMORBIDITIES.
HOW DO YOU DIFFERENTIATE AUTISM FROM ADHD?
HERE IT IS.
A LOT OF CHILDREN WITH AUTISM HAVE DIFFICULTIES AND ARE
HYPERACTIVE.
BUT SOMETIMES THEY COME TO OUR CLINICAL ASSESSMENTS AND THEY
ARE THE TARGET OF VIRTUE DOING SOMETHING LIKE A IQ TEST.
HOW CAN THEY HAVE ADHD?
AND THEN ALL OF A SUDDEN YOU MOVE TO THE NEXT STEP OF YOUR
ASSESSMENT WHEN YOU LOOK AT ALL OF THE STRUCTURES AND NOW
YOU'RE DOING YOUR CLINICAL, YOUR AUTISM OBSERVATION SCHEDULE
AND THEN THE CHILD IS ON THE CHAIR, BELOW THE CHAIR, ABOVE THE
TABLE.
THE CHILD HAS ADHD.
IN MANY WAYS OUR CHILDREN DON'T PAY ATTENTION TO THE THINGS
WE WANT THEM TO PAY TENSION TO.
AND THEY PAY ATTENTION TO TOO MANY THINGS WE DON'T WANT THEM
TO PAY ATTENTION TO.
THIS IS NOT THE MODEL WE FOLLOW IN ADHD.
OF COURSE CHILDREN A AUTISM ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓‬
NOT BECAUSE GOD CREATED CHILDREN WITH AUTISM AND SAID YOU
SHALL NOT HAVE ADHD.
IT'S TO CONSIDER TO LOOK AT AUTISM PRIMARY.
IT'S A NEW DEVELOPMENTAL CONDITION AND IT'S CRITICAL FOR US TO
KEEP THAT IN MIND.
WHAT ABOUT OTHER CONDITIONS?
OCD IS A GOOD ONE.
I DIDN'T SPEAK MUCH ABOUT THE INDIVIDUALS WITH ASPERGER
SYNDROME BUT IT'S A VARIANT OF THE CONDITION.
THERE IS THIS INTEREST THEY HAVE IN ESO TERRIC THINGS IN THE
WORLD THEY LEARN ABOUT WHETHER IT IS A TELEPHONE PHONE
INSULATOR OR ANYTHING THEY LEARN A GREAT DEAL AND WANT TO
SHARE WITH YOU.
OVER 80% OF HIGHER FUNCTIONING INDIVIDUALS WITH AUTISM WANT TO
SHARE THAT WITH OTHERS.
AND THEN WHAT HAPPENS?
PEOPLE ASK HOW DO YOU DIFFERENTIATE THAT FROM OCD THAT HAS
IRRATIONAL THOUGHTS AND BEHAVIORS.
HOW DO YOU DIFFERENTIATE THINGS?
GEORGE USED TO TALK ABOUT WORDS.
WE USE OBSESSIONS HERE AND HERE AND YET THEY MEAN DIFFERENT
THINGS.
OBSESSIONS IN OCD HAVE TO DO WITH IRRATIONAL THOUGHTS AND
THEY'RE EXTRAORDINARILY DISABLING.
THEY FEEL MISERABLE.
THEY HATE THOSE OBSESSIONS AND THEY BECOME REALLY SORT OF
ENCHAINED TO THEIR COMPULSIONS.
WHAT ABOUT THOSE WITH ASPERGER SYNDROME?
DO THEY HAVE OBSESSION?
YES.
THEY LEARN ABOUT THE THINGS A GREAT DEAL BUT THEY LOVE THEIR
OBSESSIONS.
THEY LOVE THEIR OBSESSIONS!
[CHUCKLING]
WHEN WE MAKE THAT LITTLE MISTAKE AND WE BELIEVE THAT BY USING
THE SAME WORDS IT SORT OF CONVEYS THE SENSE THAT THERE IS
SHARED ETIOLOGY THEN YOU CONDUCT DRUG STUDIES USING THE KINDS
OF MEDICATIONS THAT ARE TYPICALLY USED FOR OCD IN ORDER TO
SOMEHOW CURB THE OBSESSIONS AND COMPULSIONS OF INDIVIDUALS
WITH AUTISM AND YOUR AFFECT SIZES IS MINUSCULE.
FOR THOSE OF YOU WHO HAVE KNOWN THE RESEARCH UNITS FOR
PEDIATRIC PSYCH PHARMACOLOGY YOU SEE WHICH TRIALS FAIR THE
BEST AND THOSE THAT FAIR THE WORST.
AND THE DIFFERENTIATING ELEMENTS HERE CAN HAVE AN IMPACT ON
HOW WE CONCEPTUALIZE LARGE STUDIES.
WHEN WE ARE TREATING DIFFICULT BEHAVIORS IN OUR CHILDREN
TYPICALLY THERE ARE TWO WAYS OF DOING THAT.
PHARMACOLOGY CAN HELP.
AND WE DO SO NOT BECAUSE WE EXPECT THEM, THE SYMPTOMS TO
DISAPPEAR TO BE CURED BUT MAKE THE CHILDREN AVAILABLE FOR THE
REAL KINDS OF TREATMENTS IN THE FIELD.
AND TRYING TO GET A SENSE OF THE FUNCTION AT A PARTICULAR
BEHAVIOR.
IT IS CRITICAL.
BY COMBINING THE TWO THERE IS PHARMACOLOGY IN ORDER TO TREAT
THE MORE DIFFICULT CONDITIONS.
I LISTED TO YOU AND IT'S IN YOUR HANDOUT AS WELL SOME OF THE
CRITICAL COMORBIDITIES IN LOWER AND HIGHER FUNCTIONING.
AT THIS POINT IN TIME I TALK TOO MUCH.
IT'S TIME FOR ME TO INTRODUCE MY WONDERFUL COLLEAGUE, BECKY
LANDA CLAP.
[WHISPERING]
>>: HI EVERYONE.
SO, I AM GOING TO CONDENSE MY TALK INTO ABOUT 10 MINUTES.
BUT THE GOOD NEWS IS THAT MOST OF THE THINGS I HAVE TO SAY ARE
SELF EXPLANATORY IN YOUR HANDOUT.
WE'RE A LARGE THRIVING CLINIC WITH SERVICES FROM 0‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
AN INTEGRATED PROGRAM BEYOND INTO INTERNATIONAL
COLLABORATIONS.
SO, THE WAY THAT MY TALK IS ORGANIZED IS THAT I WANTED TO START
OFF ‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓‬
PRESENTATIONS LIKE THIS THINKING ABOUT EARLY LIFE AND
DETECTION AND WORKING INTO PICKING UP REALLY WHERE AMI LEFT
OFF AND THAT WOULD BE TALKING ABOUT MORE OF THE SOCIAL
COMMUNICATIVE AND SENSORY COMPONENTS OF AUTISM AND HOW TO
THINK ABOUT THEM FROM AN ASSESSMENT PERSPECTIVE.
SINCE I'M NOT GONNA BE ABLE TO COVER ALL THIS, I'M PROBABLY
GONNA FOCUS ON THE EARLY DETECTION AND LET YOU LOOK AT HOW I
LAID OUT THE COMMUNICATION ASPECT AND THE SENSORY PIECES.
I DO HAVE REFERENCES ON THERE AND WILL BE SENDING CAROL AND ‫﷓ ﷓ ﷓‬
THE FULL BIBLIOGRAPHY.
I HAVE BEEN TRAVELING THIS WEEK AND LAST WEEK BUT WON'T GET
THEM TO YOU CAROL UNTIL NEXT WEEK.
I HOPE THAT'S OKAY.
REGARDING TO THE EARLY PHASES OF AUTISM WHERE WE ARE RIGHT
NOW CLINICALLY IS THAT PARENTS REPORT THEIR CONCERN AT MEAN
AGE 18 MONTHS AND SOME REPORT THEY WERE NOT OKAY FROM THE
EARLY PHASES OF LIFE.
THIS REPORT IS SOMEWHAT FUZZY BECAUSE IT ALL DEPENDS ON
CONTEXT.
DO PARENTS HAVE AN OLDER CHILD WITH WHOM TO COMPARE THE
BABY?
WHO IS IN THEIR COMMUNITY?
AND THAT SORT OF A THING.
I'M GOING TO TALK MORE ABOUT THAT POSSIBLY.
BUT ALSO WE KNOW THERE IS A LAPSE OF OVER A YEAR OF WHEN
PARENTS TEND TO REPORT AND THE CHILD RECEIVES DIAGNOSIS.
WE WANT TO SHORTEN THAT TIME TO GET THEM INTO INTERVENTION OR
SHORTEN THE TIME THAT WE RECOGNIZE THE CHILD NEEDS
INTERVENTION.
PEDIATRICIAN, WHEN THEY DO HEAR THAT THERE IS A CONCERN AND
DECIDE NOT TO GO FORWARD WITH A REFERRAL WHEN CHILDREN ARE
ABOUT 2 AREAS OF AGE, THE REASON TENDS TO BE LET'S WAIT AND SEE,
THERE IS NO WORRY OR THERE IS NO PROBLEM.
IT'S NOT VERY OFTEN THAT THE REFERRALS HAVE BEEN MADE.
AND THE AGE AT WHICH THE DIAGNOSIS IS USUALLY MADE IS BETWEEN
3‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
LATER.
WHAT YOU SEE IN THE LOWER RIGHT HAND CORNER IS THE AUTISM TOOL
KIT AVAILABLE FROM THE AAP.ORG AUTISM ‫ ﷓﷓ ﷓﷓﷓﷓ ﷓ ﷓‬ORRY, THEIR
BOOKSTORE.
AND JUST A MONTH OR TWO AGO, TWO VERY IMPORTANT PAPERS CAME
OUT IN THE JOURNAL OF PEDIATRICS SO I REFERENCE THAT HERE.
IT'S BY CHRIS JOHNSON WHO IS THE AUTHOR AND YOU CAN READ IT
LATER.
AND THIS IS A SUMMARY OF THE PAPER AND I DON'T THINK I SHOULD
SPEND TIME ON THAT BECAUSE I FEEL I COVERED THIS PRETTY
ADEQUATELY IN OUR HANDOUT.
AND THEN I LISTED SCREENERS TYPICALLY USED.
UNDERSTAND WHEN WE'RE THINKING ABOUT KIDS FROM 18 MONTHS AND
OLDER, WE DO HAVE SOME SCREENERS THAT HAVE SOME SENSITIVITY
AND SPECIFICITY.
RATHER GOOD, ACTUALLY.
AND THE ONE THAT'S THE BEST THAT I KNOW OF IS THE NCHAT BY
ROBINS AND THAT'S FREE.
IF YOU GOOGLE NCHAT YOU WILL FIND IT AND SCORING SYSTEMS AND IT
TAKES A COUPLE OF MINUTES TO GIVE AND SCORE AND DOES NOT NEED
TO BE DONE BY A PROFESSIONAL.
PARENTS CAN BE THIS, IT CAN BE SCORED BY A LAYPERSON.
WHAT HAS RECENTLY COME UP IS INCREASING THE SPECIFICITY OF THE
INSTRUMENT BY DOING A BRIEF INTERVIEW OF FAMILIES OF KIDS WHO
FAILED THE INSTRUMENT.
WHAT CHRIS JOHNSON HIGHLIGHTS FOR ALL OF US AND WE HAVE BEEN
PRACTICE FOR YEARS IN OUR COMMUNITY IS NOT JUST TO GO BY THE
SCREENING RESULTS BUT THINK ABOUT RISK FROM A VARIETY OF
PERSPECTIVES.
INCLUDING IS SOMEBODY THAT IS CONCERNED.
IT CAN BE THE PARENT OR PEDIATRICIAN OR MEMBER OF THE
COMMUNITY AND THE CHILD WOULD STILL PASS THE SCREENING.
DOES THE CHILD FAIL THE SCREENING AND NOBODY IS CONCERNED?
YOU CAN LAY OUT ALL OF THE POSSIBLE COMBINATIONS HERE.
WHEN WE'RE TALKING ABOUT KIDS WHO ARE UNDER 18 MONTHS OF AGE
WE REALLY AT THIS POINT IN TIME HAVE TO RELY ON
NONAUTISM‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
AND I THINK THAT'S OKAY FOR REASONS THAT YOU'RE GOING TO
UNDERSTAND IN A FEW MINUTES.
I WANTED YOU TO KNOW THERE ARE ALSO SECOND SCREENERS.
ONCE A CHILD HAS FAILED A FIRST SCREENING, HOW CLOSE ARE WE TO
THE TARGET FOR AUTISM SPECTRUM DISORDER BEFORE WE HAVE A
FULL‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
WE KNOW CENTERS ARE CLOGGED UP.
AND WE TALK ABOUT HAVING MONTHS AND MONTHS WAIT.
AT OUR CENTER FOR CHILDREN WHO ARE VERY YOUNG, WE DON'T WAIT
TO SEE THE CHILDREN EVEN IF IT MEANS THAT I STAY UP ALL NIGHT.
SO, THERE ARE SOME INSTRUMENTS THAT ARE IN PROCESS.
SO I WANTED YOU TO KNOW ABOUT THAT ARE ACTUALLY TRY TO GET TO
THE POINT WHERE WE CAN ACTUALLY BE SCREENING KIDS IN AROUND
THE TIME OF THEIR FIRST BIRTHDAY WITH SOME DEGREE OF CERTAINTY
THAT SOMETHING'S NOT OKAY.
OKAY.
SO, I WANT TO MOVE TO THIS HANDOUT WHERE WE'RE TALKING ABOUT
EARLY DIAGNOSIS.
THIS IS A TRICKY SEMANTIC TERM, EARLY DIAGNOSIS, EARLY
DETECTION.
SO, BASICALLY HERE WE ‫﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
CLINICIAN IS REALLY THE GOLD STANDARD.
NO INSTRUMENT CAN REALLY ADEQUATELY DIAGNOSE AUTISM.
THIS BECOMES EVEN MORE OF A TRUISM WHEN WE START THINKING
ABOUT REALLY LITTLE KIDS.
IN REALLY YOUNG CHILDREN OR INSTRUMENTATION IS NOT THAT GREAT
PLUS CHILDREN ARE FUNKY BEINGS AND IT DOESN'T MEAN THAT
SOMETHING IS DEVELOPMENTAL WRONG WITH THEM.
A VERY IMPORTANT PAPER BY WENDY STONE TOLD US IN THE LATE '90s
THAT THE MORE EXPERTISE THAT WE HAVE AS CLINICIANS THE MORE
LIKELY THAT THE DIAGNOSIS OF AUTISM IS GOING TO BE STABLE IN
YOUNG CHILDREN.
WHEN WE TALK ABOUT YOUNG CHILDREN REALLY WE'RE TALKING
ABOUT 3‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
WHEN WE GET INTO 2‫﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
COMMUNITY AND THAT'S BASICALLY DOWN TO 30 MONTHS.
WHEN WE GET YOUNGER THAN 30 MONTHS I DON'T KNOW OF TOO MANY
PEOPLE WHO HAVE VERY MUCH EXPERIENCE IN THIS REALM AND I
WOULDN'T WANT TO ADVISE ANYONE TO BE DIAGNOSEING AUTISM IN
CHILDREN UNDER 30 MONTHS WITHOUT FAIR EXPERIENCE WITH
TYPICALLY DEVELOPMENT, WITH A VARIETY OF DISORDERS AND WITH
AUTISM.
AND MOST THOSE PEOPLE HAVE PASSED A COUPLE MILESTONE
BIRTHDAYS BECAUSE IT TAKES A WHILE TO GET THE EXPERIENCE.
DIAGNOSIS CAN CHANGE OVER TIME.
AND HERE IS THE STORY ON THAT: IF A CHILD IS PARTICULAR AN OLD 2
YEAR‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓‬
FAR AS THE 9TH BIRTHDAY.
AND THAT'S AS FAR AS THE DATA NOW DEPOSE ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
IF WE'RE TALKING ABOUT 2‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
PERVASIVE DEVELOPMENTAL DISORDER NOT OTHERWISE SPECIFIED WE
CAN HAVE SOME FLUCTUATION TYPICALLY WHERE KIDS WITH AUTISM
MIGHT MOVE INTO PDDNOS.
BUT KIDS WITH PDD COULD MOVE OFF THE SPECTRUM.
AND DEBBIE FINE HAS PUBLISHED A FEW PAPERS ON THIS.
WE ALSO KNOW THAT YOU'RE MORE LIKELY TO HAVE SOME SHIFTING OF
DIAGNOSIS IF YOU'RE YOUNGER THAN 30 MONTHS AND IF YOU HAVE A
HIGHER IQ.
SO, WE RECENTLY PUBLISHED A PAPER ACTUALLY IN JULY WHERE WE
TALKED ABOUT BEING ABLE TO DIAGNOSE CHILDREN WITH AUTISM AS
YOUNG AS 14 MONTHS OF AGE.
BUT WHAT WE FOUND WAS THAT AT 14 MONTHS OF AGE ONLY HALF OF
THE CHILDREN WHO WERE GOING TO HAVE SPECTRUM DISORDER WERE
DIAGNOSEABLE AT THAT AGE.
HOW DO I KNOW THIS?
AS AMI MENTIONED OUR RESEARCH STRATEGY WAS TO ASSESS BABIES
FROM 6 MONTHS OF AGE FORWARD ON A REGULAR BASIS WHO HAVE AN
OLDER SIBLING.
SO, I JUST WANTED TO SHOW A COUPLE OF SLIDES HERE ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
SO, THESE ARE JUST A COUPLE OF IMAGES SO THAT YOU SEE THAT WE
ACTUALLY ‫﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
PLAY SAMPLE SEMISTRUCTURED PLAY SAMPLED INTERACTIONS USING
THE COMMUNICATION AND SYMBOLIC BEHAVIOR SKILLS
DEVELOPMENTAL PROFILE, THE CFDSDP AND WE ACTUALLY COUNTED
HOW MANY TIMES THE CHILDREN LOOKED FROM AN OBJECT TO A
PERSON AND BACK TO THE OBJECT AND HOW MANY TIMES THEY
INITIATED JOINT ATTENTION AND HOW MANY TIMES THEY LOOKED AT
SOMEONE AND SMILED AT THEM.
WHAT WE FOUND WAS THE TOP THREE LINES ARE CHILDREN WITHOUT
AUTISM SPECTRUM DISORDER.
AND THIS IS A LINE OF KIDS NOT AT 14 MONTHS BUT WE DID AT 36
MONTHS AND THESE KIDS WE DIAGNOSED WITH AN AUTISM SPECTRUM
DISORDER AT 14 MONTHS AND THEY HAD IT AT 36 MONTHS.
WHAT THIS SLIDE SHOWS YOU IS THAT THERE IS A PROGRESSION IN
AUTISM.
AND I'M NOT GOING TO GET A CHANCE TO TELL YOU THE WHOLE STORY
ABOUT THE PROGRESSION IN AUTISM.
BUT SUFFICE IT TO SAY THAT AUTISM IS A BIT OF A BEAST IN THE FIRST
FEW YEARS OF LIFE WHERE SOME THINGS ARE MOVING FORWARD IN
DEVELOPMENT AND SOME THINGS ARE ACTUALLY STARTING TO FALL
APART.
AND THE AFFECTIVE SYSTEM ESPECIALLY AS IT RELATES TO SOCIAL
ENGAGEMENT ARE HIGHLY VULNERABLE.
YOU CAN SEE IF YOU LOOK AT SLIDE AFTER SLIDE OR GET HOLD OF THAT
PAPER, IT SEEMS THAT THE REASON WE DIDN'T DIAGNOSE THE KIDS WHO
HAD THE LATER DIAGNOSIS OF ASD AT 14 MONTHS IS BECAUSE THEY
REALLY DIDN'T DEFINE THEMSELVES BEHAVIORBLY.
AT LEAST ON THE GROSS MEASURES.
WHAT HAPPENS IS JOINT ATTENTION FOR THE KIDS IS THEY HAVE SOME
AT 14 MONTHS AND DON'T GET ANYMORE BY 24 MONTHS OF AGE.
THE EARLY DIAGNOSIS GROUP HAD A COUPLE AND GET MAYBE A COUPLE
MORE BY 24 MONTHS OF AGE.
THE POINT IS THAT DEVELOPMENT IS QUITE DISRUPTIVE FOR THE
CHILDREN.
FROM A TREATMENT VIEW, THEY AREN'T USUALLY ADDRESSED IN EARLY
DEVELOPMENTAL PROGRAMS.
IF WE'RE NOT TREATING THESE EARLY WE COULD BE SETTING
OURSELVES UP FOR VERY DIFFERENT DEVELOPMENTAL OUTCOME.
SO I'M GOING TO ‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓‬
5 MORE MINUTES?
OKAY.
THIS IS A TYPICAL KID TO PROVIDE YOU WITH A FRAME OF REFERENCE
AT 6 AND 14 MONTHS.
ACTUALLY, MAYBE I SHOULDN'T BE SHOWING VIDEOS AT ALL, SHOULD I?
>>: (INAUDIBLE).
>>: OKAY YOU WANT TO SEE THEM?
OKAY.
SO, THIS BABY IS A BABY WE DIAGNOSED EARLY IN LIFE.
NOT AT 6 MONTHS.
OKAY.
I EMBEDDED ALL OF THESE ON MY MEMORY STICK ON THE PLANE ON
SATURDAY BUT FOR SOME REASON THEY'RE NOT SHOWING.
OKAY.
SO I'M GOING TO HAVE TO TELL YOU THE STORY AND I WILL PLAY MY
TREATMENT TALK OFF MY OWN LAPTOP.
BELIEVE ME IT TOOK 4 HOURS OF AIR TIME.
AND THIS IS THE FIRST TIME I'VE DONE THIS AND IT HASN'T PLAYED FOR
ME.
I DON'T KNOW WHY.
IT'S SOMETHING I DID, I'M SURE.
AT 6 MONTHS OF AGE IF YOU LOOK AT BABIES AND PARTICULARLY IN
STANDARD KINDS OF INTERACTIVE CONTEXT, BABIES WHO ARE AT HIGH
GENETIC RISK FOR AUTISM OR IF YOU'RE LIKE US AND NOW THAT PEOPLE
KNOW THAT WE ARE EXPERTS IN EARLY DETECTION OF ASD WE HAVE
BABIES THAT COME TO US FROM ALL OVER THE WORLD EARLY IN LIFE.
AND MOST OF THE TIME WE'RE ‫﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AUTISM, OFTEN TIMES WE FIND UPPER GI REFLUX OR SEIZURE DISORDER
OR SOMETHING ELSE.
BUT WE DO FOLLOW THESE BABIES VERY CLOSELY.
WE DO HAVE A PARADIGM THAT WE USE TO ASSESS THESE BABIES.
WHAT WE ARE FINDING FROM OUR LONGITUDINAL BABY STUDY IS THE
EARLIEST INDICATORS OF ASD AT 6 MONTHS OF AGE ACTUALLY AREN'T
SPECIFIC TO AUTISM AT ALL.
AND SO IT SEEMS THAT THESE BABIES IN GENERAL IF YOU'RE DOING LIKE
A PEEK A BOO INTERACTION WITH THEM OR OTHER KINDS OF
INTERACTIONS, THEY LOOK QUITE RESPONSIVE.
HOWEVER, THERE IS ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
TO HAVE PROBLEMS WITH POSTURAL CONTROL AND ATYPICAL
MOVEMENTS.
BUT WHEN WE PUT THEM INTO A CHALLENGE TASK, THIS ONE WHERE WE
HAVE THE BABY SEATED IN A HIGHCHAIR AND THE BABY IS TETHERED
BY A VERY SOFT CORD TO A SWITCH THAT'S BETWEEN THEIR FEET AND
IT'S 45‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
45‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
ACTUALLY SETS UP BABIES WHO HAVE VERY VULNERABLE DEVELOPING
COMMUNICATION AND SOCIAL SYSTEMS FOR US TO BE ABLE TO SEE
QUITE READILY THE REDUCED AFFECT VARIATION, REDUCED
FLEXIBILITY IN THE WAY THEY ACTIVATE THE SWITCH.
THEIR TRICKY ATTENTION TO THE SWITCH OR THE TOY AND FOCUS ON
OBJECTS RATHER THAN PEOPLE.
BY THE TIME KIDS ARE 14 MONTHS OF AGE, THE KINDS OF THINGS THAT
BEGIN TO DIFFERENTIATE THEM NOW LOOK MORE AUTISM‫﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
THAT IS THAT THEY HAVE A REDUCED FREQUENCY OF GAZE FROM
OBJECTS TO PEOPLE AND BACK TO OBJECTS AND HAVE A REDUCED
VARIETY OF CONSONANTS IN THEIR COMMUNICATIVE BIDS AND 60% OF
THE KIDS AT THIS AGE ARE SHOWING BEHAVIORS.
AND OTHER RED FLAGS INCLUDE THINGS LIKE REDUCED EYE CONTACT,
INFREQUENT AFFECT SHARING.
THEY DO IMITATE STILL.
BUT WHAT'S HAPPENING IN THE IMITATION AND THEY DON'T IMITATE IN
A SOCIALLY ENGAGED WAY.
AND THE FORM OF THEIR MOVEMENTS DOESN'T REALLY MATCH WHAT
THEY'RE TRYING TO IMITATE AND THEY ALSO IMITATE WEIRD THINGS,
THINGS THAT YOU WOULDN'T EXPECT.
FOR EXAMPLE, IF YOU'RE SAYING: NEED HELP?
AND YOU POINT TO THE PALM OF YOUR HAND TO GIVE THE CUE IN YOUR
HAND THEY WOULD IMITATE THE BEHAVIOR RATHER THAN THE CHILD
WHO PUTS IT IN YOUR HAND.
AND LOW SOCIAL ENDURANCE.
I'M GOING TO FINISH MY TALK HERE AND WE WILL COME BACK AND I
WILL TALK ABOUT THE TREATMENT OFF MY LAPTOP.
THANK YOU.
[APPLAUSE]
>>: THANK YOU VERY MUCH.
AND WE WILL RETURN IN 15 MINUTES.
SO I WILL SEE YOU THEN.
[PAUSE FOR BREAK]
.
[MUSIC PLAYING]
.
[TALKING IN BACKGROUND]
>>: ARE WE READY TO GET GOING?

>>: HI FOLKS!
LET'S RETURN TO OUR SEATS.
WE WILL GET STARTED IN A MOMENT.
 THANK YOU VERY MUCH.
A GENTLE REMINDER TO KEEP THE CELL PHONES OFF.
DR. REBECCA LANDA WILL CONTINUE WITH HER TALK AND WE WILL NOW
BE TALKING ABOUT AUTISM TREATMENT.
AND LET ME JUST CLARIFY ONE POINT: OUR PANEL DISCUSSION WILL
BEGIN AT NOON TODAY AFTER DR. GRINKER'S TALK.
THANK YOU.
AND THIS IS DR. REBECCA LANDA.
>>: THANK YOU, EVERYONE.
SO, WHEN I WAS ON THE CONFERENCE CALL PLANNING THIS SESSION
WITH MY COLLEAGUES, THERE WERE A LOT OF THINGS THAT PEOPLE
WANTED TO HAVE SAID ABOUT TREATMENT.
SO WHAT I'VE DONE IS TO PROVIDE A LOT MORE MATERIAL FOR YOU
THAN I'M GOING TO COVER.
AGAIN, I PUT DOWN THE REFERENCES FOR THINGS SO THAT YOU CAN
REFER BACK TO THE ORIGINAL ARTICLE.
BY VIRTUE OF THE FACT THAT YOU HAVE ALL OF THE ARTICLES DOESN'T
MEAN I INTENTIONALLY WANTED TO SPEAK TO ALL OF THE SLIDES.
THIS IS JUST WHAT'S HAPPENING IN AUTISM TREATMENT RIGHT NOW.
WE'RE GOING TO TALK ABOUT INTERVENTIONS AS WELL AS THE
COMPLIMENTARY AND ALTERNATIVE INTERVENTIONS AND TALK TO YOU
ABOUT SOME NEW TRENDS IN AUTISM TREATMENT RESEARCH AND
CONCLUDING REMARKS.
AS YOU KNOW NOW FROM THIS MORNING'S PRESENTATION, THERE IS A
LOT OF HETEROGENEITY IN WHAT WE CALL AUTISM SPECTRUM
DISORDERS.
THERE ARE MULTIPLE SYSTEMS INVOLVED AND WE HAVEN'T HAD TIME
TO TALK TO YOU ABOUT THE NEUROLOGICAL SYSTEMS.
BUT IT'S IN AND ACROSS THE SYSTEMS THAT THERE IS A LOT OF
PROBLEMS WITH THE INTERACTION OF DEVELOPMENTAL ABILITIES.
SO, BECAUSE OF THIS WIDE‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
ON DEVELOPMENT, MULTIPLE INTERVENTIONS ARE REALLY NEEDED TO
OPTIMIZE OUTCOME.
SO, THIS PHRASE POLYTREATMENT ACTUALLY MAKES IT DIFFICULT FOR
RESEARCHERS TO UNDERSTAND CAUSAL RELATIONSHIPS BETWEEN
INTERVENTION AND CHANGE IN THE INDIVIDUAL WITH AUTISM.
WE DO KNOW FROM THE NEUROSCIENCES THAT EXPERIENCED
NEUROPLASTICITY IS A REAL PHENOMENON.
‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
GREATER AND GREATER IMPACTS ON DEVELOPMENT.
THIS IS CURTESY OF PAUL LONG AND ANSWER ALL KINDS OF QUESTIONS
ABOUT A CHILD OR FAMILY OR YOURSELF WITH AUTISM.
WHAT WE KNOW FROM THE RESPONSE SO FAR IS THAT ON AVERAGE,
CHILDREN WITH AUTISM HAVE FIVE DIFFERENT TREATMENTS.
SO, THIS IS ACTUALLY PAUL LAW'S SON ISAAC'S RENDITION OF AN
AUTISM ERADICATING MACHINE.
HE SAYS THIS WILL HELP PEOPLE WITH AUTISM.
AND I THINK THIS IS WHAT THE WORLD AND ALL OF US ARE REALLY
WISHING FOR.
AND BECAUSE OF THAT INTENSE WISH WE TEND TO DO ANYTHING AND
EVERYTHING THAT WE THINK MIGHT HELP THE CHILDREN SOMETIMES
ACTUALLY INFLICTING HARM WHEN WE DIDN'T INTEND TO.
SO HERE IS SOME OF THE NOTIONS OUT IN THE COMMUNITY.
FIRST OF ALL, EARLIER IS BETTER AND THERE IS FEAR WITH FAMILIES
WITH OLDER CHILDREN WITH AUTISM, THAT BECAUSE THEY WEREN'T
DETECTED EARLIER, THE OUTCOMES HAVE BEEN PERMANENTLY
DISADVANTAGED.
WHILE WE CERTAINLY DON'T HAVE EVIDENCE THAT THAT'S DEFINITELY
TRUE WE DO KNOW THAT EVEN IF INTERVENTION IS STARTED LATER IN
LIFE WE CAN STILL HAVE A MAJOR IMPACT FOR CHILDREN WITH AUTISM.
THERE IS ALSO THE PHILOSOPHY THAT MORE IS BETTER.
ONE OF THE PROBLEMS THAT WE HAVE WITH THIS CONCEPT IS WE DON'T
QUITE KNOW WHAT "MORE" IS.
BECAUSE WE THINK ABOUT MORE AS BEING INTENSITY AND ALSO
DIVERSITY OF TREATMENTS.
BUT IF YOU SEE SOME OF THE SAMPLES OF INTERVENTION THAT I'M
GOING TO SHOW YOU LATER AND YOU THINK ABOUT COMPARING SOME
OF THESE INTERACTIONS WITH WHAT MIGHT BE HAPPENING IN
CLASSROOMS WHERE KIDS ARE VERY PASSIVE AND NOT CHALLENGED
AND DON'T HAVE OPPORTUNITIES YOU CAN QUICKLY SEE HOW LESSER
HOURS OF MORE TRULY INTENSIVE INTERACTIVE EXPERIENCES FOR
CHILDREN MAY BE BETTER THAN MORE PROTRACTED PERIODS IN A
LEARNING CONTEXT BUT NOT ACTUALLY EXPERIENCING A LEARNING
EVENT.
THERE IS ALSO A CONCEPT IN THE FIELD THAT AVA IS THE ONLY WAY.
AND YOU WILL HEAR A LOT OF PEOPLE SAY THAT AVA IS THE ONLY
EMPIRICALLY VALIDATED APPROACH.
WHEN WE HEAR IT WE HAVE TO UNDERSTAND WHAT'S MEANT BY THAT.
IT'S A SET OF LEARNING PRINCIPLES AND NOT NECESSARILY WHAT MOST
PEOPLE THINK OF IT AS: AS A DISCRETE APPROACH TO INTERVENTION.
WE ALSO THINK A LOT ABOUT CURES AND POTIONS.
AND AT THIS PRESENT TIME THERE IS NO CURE FOR AUTISM.
SO, WHEN WE THINK ABOUT QUESTIONS FOR EMPIRICAL INVESTIGATION
IN AUTISM, HERE ARE SOME: HOW SOON SHOULD TREATMENT AGAIN?
IN ONE OF MY MANUSCRIPTS AND THE ONE I TALKED ABOUT THAT CAME
OUT LAST SUMMER, ONE OF THE REVIEWERS HAD A CONCERN ABOUT THE
PAPER.
THAT I WOULD BE ENCOURAGING PEOPLE WHOSE CHILDREN HAD THIS
PARTICULAR CONSTELLATION OF ABILITIES TO ACTUALLY BE IN
INTERVENTION.
AND I WANT TO MAKE SURE IT IS ACTUALLY WHAT I MEANT.
THERE IS A LITTLE TUG AND PULL IN THE COMMUNITY ABOUT IF A CHILD
LOOKS LIKE THEY HAVE AUTISM, SHOULD WE GO AHEAD AND START
TREATMENT OR WAIT LONGER TO SEE IF IT'S REALLY AUTISM OR DELAY
OR IF IT'S GOING TO GET BETTER ON IT'S OWN.
IF THE CHILD IS NOT APPEARING NORMAL, GO AHEAD AND START
INTERVENTION.
WHAT SHOULD WE BE TREATING?
ONLY TREATING MATCHING AND SORTING?
SHOULD WE ALSO BE TEACHING AFFECT AND TEACHING CHILDREN
ABOUT JOINT ATTENTION.
HOW INTENSIVELY SHOULD WE TREAT AND WHO TREATS?
THE PARENTS A PROFESSIONAL, A PARAPROFESSIONAL?
WHERE IS IT CONDUCT ?D WHAT ARE THE ACTIVE TREATMENT
NONRESIDENTS ‫﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓‬
LEARNED SKILLS AND KNOWLEDGE.
THE STATE‫ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬E A
BIT BUT WE HAVE AN AWFUL LOT MORE TO LEARN.
THERE ARE VERY FEW RANDOMIZED CLINICAL TRIALS AND VERY FEW
THAT USE EXPERIMENTAL DESIGNS.
MOST STUDIES PUBLISHED HAVE SMALL NUMBERS OF CHILDREN
INVOLVED IN THEM.
AND MOST AND PARTICULAR AVA STUDIES HAVE SINGLE SUBJECT
DESIGNS THAT SHOW SHORT‫﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
BEHAVIORS OR THERE MAY BE A GROUP DESIGNED WHERE THERE IS A
LONGER TERM PREVENTION LIKE 3 AND 5 YEARS WITH POST CUE OR
ADAPTIVE FUNCTIONS AND NOT ABOUT THE KINDS OF THINGS THAT AMI
WAS TALKING ABOUT THIS MORNING.
VERY FEW OUTCOME MEASURES TEND TO BE USED IN TREATMENT
STUDIES AND THERE HAVE BEEN VERY FEW REPLICATION STUDIES.
THERE TEND TO BE CONFLICTING FINDINGS ACROSS STUDIES AND
STUDIES WITH HETEROGENOUS OUTCOMES AND EVEN THOUGH WE KNOW
A FAIR BIT ABOUT INTERVENTION.
IT'S NOT AS MUCH AS WE WISH WE KNEW.
MUCH OF THIS HAS NOT MADE ITS WAY INTO THE PUBLIC DOMAIN, INTO
PUBLIC SCHOOLS.
OKAY.
SO, WHEN WE THINK ABOUT INTERVENTION OPTIONS, WE HAVE THE
BEHAVIORAL, EDUCATIONAL, PSYCHOSOCIAL INTERVENTIONS WHERE
WE TARGET SPECIFIC SKILL DEVELOPMENT OR WE MAY HAVE MORE
COMPREHENSIVE INTERVENTIONS.
WE CAN ALSO USE A PHARMACOLOGIC APPROACH OR COMPLIMENTARY
AND ALTERNATIVE INTERVENTIONS.
SO, THERE ARE OTHER KINDS OF INTERVENTION STUDIES OUT THERE.
AND I'M NOT GOING TO BE REVIEWING TODAY.
AND THOSE HAVE TO DO WITH INTERVENTIONS FOR CHILDREN WITHOUT
AUTISM BUT WHO HAVE OTHER KINDS OF RISK FACTORS OR
DEVELOPMENTAL DIFFICULTIES BUT THAT MAKES SENSE FOR CHILDREN
WITH ANY KIND OF SPECIAL LEARNING NEEDS.
WE ALSO HAVE STUDIES THAT LOOK AT A MICRO LEVEL, LOOKING
SPECIFICALLY AT COGNITIVE MECHANISMS AND LEARNING THEORIES
LIKE PROXIMITY OF CUE TO AWARD OR MEDIASY OF AWARD AND SUCH.
I'M NOT GOING TO BE REVIEWING THAT LITERATURE TODAY.
AND THERE IS ALSO AN EMERGING FIELD OF USING SOFTWARE TO STUDY
WAYS TO IMPROVE LEARNING IN CHILDREN WITH AUTISM.
AND THESE INCLUDE THINGS AFFECTING COGNITION AND ACADEMIC
ABILITY, LANGUAGE LEARNING, SOCIAL FUNCTIONING.
AND ALSO THERE IS STUDIES BEGINNING TO USE VIRTUALITY AND
ROBOTICS.
I'M IN THE GOING TO BE REVIEWING THAT TODAY.
IN 2001 A BOOK WAS PUBLISHED AND YOU CAN ACTUALLY READ IT
ON‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
COPY.
A RECOMMENDATION FOR CHILDREN WITH ASD, 0‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
CAME OUT OF THIS COMMITTEE'S WORK HAS BEEN QUITE ENDURING
EVEN THROUGH NOW, THE CURRENT TIME.
SO, THE KINDS OF RECOMMENDATIONS THAT THESE FOLKS MADE WAS TO
TREAT AS EARLY AS POSSIBLE, TO HAVE CHILDREN ACTIVELY ENGAGED
IN INTERVENTION.
AND AMI ELUDED TO IN HIS PRESENTATION: HIGH INTEREST THAT
PROVIDE MULTIPLE RESPONSE OPPORTUNITIES WITH CHILDREN BEING
ENGAGED IN MEANINGFUL INTERACTIONS.
AT LEAST 25 HOURS A WEEK 12 MONTHS OUT OF THE YEAR IS WHAT CAME
OUT OF THIS RECOMMENDATION AND HAVING REPEATED PLAN
DEVELOPMENTALLY APPROPRIATE TEACHING OPPORTUNITS
THROUGHOUT THE DAY INCLUDING INDIVIDUALIZED ATTENTION BUT
NOT EXCLUSIVELY WITH TRAINED STAFF.
AND THAT, AGAIN, AS AMI MENTIONED THIS MORNING, WHAT DO WE
MEAN BY TRAINED STAFF?
PROBABLY MORE THAN GOING TO A WORKSHOP.
WHAT WE HAVE LEARNED AT OUR CENTER IS WE HAVE OPENED AN
EMERGING TRAINING PROGRAM WHERE PROFESSIONALS CAN ACTUALLY
COME INTO OUR CLASSROOMS AND WORK ALONG‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
LEARN ALL OF THE DIFFERENT TYPES OF INSTRUCTIONAL STRATEGIES
THAT I'M GOING TO BE MENTION TODAY.
THESE ARE SEASONED TEACHERS PRACTICING FOR 10‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
COME TO US AND LEAVE VERY DIFFERENT PEOPLE.
AND THERE ARE TAPES THAT THEY TAKE BACK TO THEIR
ADMINISTRATORS AND IT'S AMAZING TO SEE WHAT CAN BE DONE WITH
ACTUAL GUIDED PRACTICE.
AND THEN PLANNING TRANSITIONS TO THE NEXT AGE LEVELS AND THEN
INVOLVING PARENTS USING ONGOING PROGRESS MONITORING.
OKAY.
SO, I WOULD LIKE NOW TO TRANSITION INTO TALKING ABOUT SOME OF
THE MORE COMMON INTERVENTION STRATEGIES.
SO, AS I MENTIONED EARLIER ABOUT APPLED BEHAVIOR ANALYSIS, THIS
REALLY FALL INTO WHAT I'M GOING TO TALK ABOUT THREE
CATEGORIES.
ONE IS THE TRADITIONAL APPROACHES.
THAT IS USING THE CONDITIONING (INAUDIBLE) KINDS OF APPROACH
THAT WE LEARNED HAVE AN APPLICATION OF THIS TO AUTISM WHICH
WAS A HUGE ADVANCE IN THE 1970'S AND THEN APPLYING THESE IN
MORE CONTEMPORARY WAYS WHERE WE'RE NOT JUST DOING MASS
TRIALS NOW WITH REINFORCERS THAT IF YOU ASK FOR A COOKIE, COULD
YOU GET A COOKIE.
INSTEAD OF A SIP OF WATER.
BUT THIS IS A MORE COMPREHENSIVE NATURALISTIC APPROACH.
AND THEN WE HAVE THE DEVELOPMENTAL APPROACHES THAT
INCORPORATE IT BUT IT'S NOT REFLECTED IN THE INTERVENTION AND
THE DEVELOPERS OF THE INTERVENTION DO NOT BELIEVE THAT
BEHAVIOR ANALYSIS IS PART OF THE INTERVENTION.
SOME OF THEM DO, SOME OF THEM DON'T.
IF YOU WATCH THE VIDEOTAPES YOU CAN SEE THE ELEMENTS THERE.
AND THERE IS ENVIRONMENTAL ENGINEERING MUCH OF WHAT HAS
COME OUT OF THE TEACH PROGRAM AT UNIVERSITY OF CAROLINA,
CHAPEL HILL.
AND I WILL TALK ABOUT STRATEGIES THAT INCLUDE BEHAVIOR
ANALYSIS PRINCIPLES.
AND ALSO THE NEWER ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓‬
BEHAVIOR.
BUT MORE THE FOCUS IS ACTUALLY ON GETTING COMMUNICATION.
THEN THIS WORD IS USED BY A LOT OF PEOPLE IN A LOT OF DIFFERENT
WAYS.
BUT THE WAY I'M USING IT HERE IS THE WAY THAT PEOPLE WHO CAME
OUT OF THE APPLIED BEHAVIOR ANALYSIS TRADITION LIKE GAYLE
MCGUY IN A MUCH MORE NATURAL‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
TERMS AS WELL AS THE PIVOTAL RESPONSE TRAINING THAT COMES OUT
OF THE WORK.
AND PEER MEDIATED INTERVENTION.
FOR EXAMPLE, SAM ODEN'S WORK AND THIS SYSTEM BY BONDI AND
FROST.
SO LET ME FOCUS NOW ON DISCRETE TRIAL AND TELL YOU A LITTLE BIT
ABOUT WHAT THAT LOOKS LIKE.
OKAY.
SO THIS AS I SAID IS BASED ON SKINNER'S WORK AND INVOLVES THE USE
OF MASS TRIALS LIKE THE GOALS OF MOTOR, SELF HELP.
THE TARGETS ARE VERY WELL DEFINED, THE CHILD IS SEATED AT A
TABLE.
THE ADULT PICKS THE OBJECTS THAT ARE GOING TO BE USED, PICKS THE
ACTIVITY THAT'S GOING TO BE DONE WITH THEM, SELECTS THE SPECIFIC
RESPONSE THE CHILD IS SUPPOSED TO PRODUCE AND ALSO TRUE IS A
REINFORCER.
THE DISTRACTIONS ARE QUITE LIMITED AND THERE IS CONTINGENT
REINFORCEMENT.
WHEN THE CHILD HAS A RESPONSE IN A PARTICULAR WAY THEY RECEIVE
THE REINFORCEMENT.
USUALLY 10 TRIALS ON THE SAME TARGET ARE REPEATED SUCCESSIVELY
AND THERE IS A STRONG DATA KEEPING COMPONENT.
THIS IS WHAT IT LOOKS LIKE.
SORRY.
I DON'T HAVE SOUND.
OKAY.
I'M HAVING SOME TECHNOLOGICAL CHALLENGES TODAY.
OKAY.
ANYWAY, SO LET ME PLAY IT ONCE MORE FOR YOU.
WHAT YOU'RE GOING TO SEE HERE IS THE CLINICIAN TELLING THE CHILD
TO STAND UP.
THE CHILD STANDS UP AND THEN SHE REINFORCES THE CHILD GIVING
THE CHILD IN THIS CASE A TOY SHE PRESELECTED.
DO WE HAVE A PLUG‫﷓ ﷓﷓ ﷓‬
>>: NO, I DON'T SEE ONE.
CAN YOU PLAY YOUR SPEAKERS?
>>: SPEAKERS ARE NOT RESPONDING.
THIS HAS NEVER HAPPENED TO ME BEFORE.
I AM REALLY SORRY.
I DON'T MEAN TO MAKE YOUR DAY THAT UNPLEASANT.
IT'S NOT YOUR FAULT, PLEASE.
NOT AT ALL.
THIS IS THE GREMLINS THAT SOMETIMES INVADE OUR SPACE.
SO, THIS IS ALL IN YOUR HANDOUT BUT THE ORIGINAL PUBLICATIONS
THAT CAME OUT OF THE WORK INDICATED THAT HE ACTUALLY TALKS
ABOUT ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
SO, SINCE THAT TIME THIS HAS BECOME QUITE ADOPTED IN MANY
PLACES AND THERE WAS 40 HOURS OF INTERVENTION PER WEEK.
SO, THE FIRST REPLICATION OF THIS WORK BY TRYSTIN SMITH WHO WAS
A STUDENT OF LOVAAS FOUND IF YOU ‫﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
INTERVENTION AND COMPARED IT WITH THE LOVAAS INTERVENTION 40
HOURS A WEEK, COMPARE IT TO PARENT TRAINING WHERE THE PARENTS
WERE TRAINED 5 HOURS A WEEK FOR 3‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
WERE IN A REGULAR SPECIAL ED CLASS FOR 10‫ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬URS A WEEK.
THE CHILDREN IN THE LOVAAS GROUP OUTPERFORMED THE OTHER KIDS
ON IQ, VISUAL SPATIAL ABILITIES AND ACADEMIC MEASURES.
BUT THE KINDS OF GAINS MADE WERE SMALLER THAN WHAT LOVAAS
HAD ORIGINALLY REPORTED BY ABOUT HALF.
I'M NOT GOING TO GO THROUGH ALL OF THESE.
BUT SUFFICE IT TO SAY THAT THE OTHER REPLICATIONS DONE MORE
RECENTLY RANGE FROM A FULL REPLICATION WHERE THE SAME
FINDINGS OCCURRED TO ANOTHER FINDING WHERE TRYSTAN SMITH
FOUND THAT THE KIDS WHO MADE ADVANCES AGAIN WERE THE KIDS
WITH MILDER DISORDERS, THE PERVASIVE DEVELOPMENTAL DISORDERS,
THOSE KIDS MADE THE GREATEST GAINS.
SO THERE HAVE BEEN SOME FRUSTRATION WITH THE LACK OF
GENERALIZATION THAT MANY KIDS MAKE AFTER THEY HAVE BEEN IN AN
APPLIED BEHAVIOR ANALYSIS PROGRAM USING LOVAAS METHODOLOGY.
SO, THERE HAS BEEN AN ATTEMPT TO MAKE MODIFICATIONS TO THIS.
SO THIS HAS BEEN COINED THE TERM: CONTEMPORARY AVA AND I
LISTED EXAMPLES OF THE INTERVENTIONS THAT USE THESE.
SO, WHAT'S HAPPENING HERE ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
THE TEACHING INTERACTION IS SHARED WITH THE CHILD MORE.
AND I'M GOING TO SHOW YOU SOME VIDEO OF THAT WHERE THE
INTERACTIONS ARE MORE NATURAL AND LOOSELY STRUCTURED.
THERE AREN'T MASS TRIALS.
YOU DON'T SIT THE CHILD DOWN AND REPEATEDLY SAY "TOUCH CUP",
YOU KNOW, 10 TIMES IN A ROW.
SO, LIKE THE LOVAAS THERAPY, THERE ARE SPECIFIC TARGET
BEHAVIORS.
HOWEVER, IN ONE INTERACTION YOU MIGHT BE TARGETING AN
IMITATION, A VOCALIZATION, A TURN‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
USE OF A TOY, ALL OF THAT MIGHT HAPPEN WITH THE SAME TOYS AT THE
SAME INTERACTION IN TIME.
AND THEN THE REINFORCER THAT THE CHILD IS GIVING MAKES SENSE.
IF A CHILD ASKS FOR A CAR THEY GET A CAR, NOT AN M & M.
THE PROMPT HIERARCHY.
AND THERE ARE A VARIETY OF SKILLS THAT ARE TARGETED.
SO, THIS IS A VIDEO FROM DR. LARES'S LAB.
THIS CHILD IS PLAYING WITH A BARNYARD SET OF TOYS AND HE IS
REQUESTING ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
SHE'S NOT GOING TO LET HIM HAVE THE TOY UNTIL HE SAYS IT.
BUT THIS IS A DIFFERENT LOOK WHERE IT LOOKS LIKE THE CHILD IS
MAKING MEANINGFUL PLAY.
AND HE'S PERFORMING AN ACTION THAT THE EXAMINER IMITATES AND
SHE ACTUALLY PAUSES GETTING HIM TO COMMUNICATE WITH HER AND
DIRECT HER BEHAVIOR USING LANGUAGE IN A COMMUNICATE OIF,
MEANINGFUL WAY ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
MOVING TO THE DEVELOPMENTAL PERSPECTIVES, BEHAVIOR IS THE
FOCUS AS IS SOCIAL INTERACTION.
AND PEOPLE DON'T FEEL AS CONFINED TO RELY ON THESE VERY HIGHLY
STRUCTURED KIND OF ‫﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
BEING ON SUCH A TIGHT REINFORCEMENT SCHEDULE.
SOCIAL LEARNING AND CONTINGENCIES HAVING EXPERIENCES THAT
HEIGHTEN THEIR ATTENTION ARE ALL PART AND PARCEL TO HEIGHTEN
MOTIVATION AND ENGAGEMENT.
SO, I DON'T KNOW WHETHER THE PEOPLE WHO AUTHORED THOSE
APPROACHES WOULD SAY THAT THIS IS AN EXAMPLE OF THE
INTERVENTION OR NOT.
BUT THIS IS JUST ONE COMPONENT OF OUR INTERVENTION THAT WE
DEVELOPED.
THIS IS FOR KIDS WHO ENTER AT MEAN AGE 27 MONTHS AND THE KIDS
ARE IN SESSION 6 MONTHS, 10 HOURS A WEEK.
THERE IS A PARENT TRAINING COMPONENT.
AND THEY'RE THERE FOR 2 AND A HALF HOURS A DAY, 4 DAYS A WEEK.
AND WHAT HAPPENS IS THAT THE KIDS GO THROUGH A VARIETY OF
DIFFERENT ACTIVITIES THAT LOOK VERY MUCH LIKE A TYPICAL
NURSERY SCHOOL OR PRESCHOOL PROGRAM.
BUT THERE IS INTENSE, INTENSE WORK ON SHARED AFFECT, JOINT
ATTENTION, CONTINGENT IMITATION AND LEARNING HOW TO FIGURE
OUT THE WORLD.
WHAT YOU'RE GOING TO SEE IN THIS VIDEOTAPED EXAMPLE IS US
TEACHING THESE KIDS HOW TO IMITATE IN A NATURALLY NATURAL
WAY.
SO WE POSITIONED THE TARGET ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
THEM ALL.
AND THE TEACHERS ARE VERY MUCH ENCOURAGING THEM TO PAY
ATTENTION TO HIM.
AND YOU WILL SEE THAT HE'S LEARNING TO DO MORE AND MORE
INTERESTING THINGS WITH THE TOY.
THE OBJECTS THAT WE USE ACTUALLY AFFORD THESE KINDS OF
GENERATIVETY THAT THE KIDS USE.
AND THIS DARLING IS GOING TO REFERENCE HIM UNTIL SHE LOSES FOCUS
AND GOES ON HER OWN.
AND THE TEACHER FOCUSES EVERYONE ON HER AND BEFORE YOU KNOW
IT, EVERYONE'S ON THE SAME PROGRAM. AND THIS MAY NOT SEEM
REMARKABLE FOR YOU BUT A 2 YEAR‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
DISORDER, THESE KIDS LOOK GREAT NOW BUT THEY DIDN'T BEFORE.
THIS IS AMAZING!
SO THEN THERE IS AUGMENTIVE COMMUNICATION.
AND AUGMENTIVE COMMUNICATION IS SOMETHING IN THE FIELD THAT
HAS UNDERGONE QUITE A BIT OF CONTROVERSY.
SO, AT THE PRESENT TIME THERE ARE TWO CAMPS: PEOPLE WHO ‫﷓ ﷓ ﷓‬
ACTUALLY, THERE ARE THREE CAMPS.
THOSE THAT THINK YOU SHOULD USE AUGMENTIVE COMMUNICATION
UNTIL THEY'RE SHOW SIGNS OF READINESS TO SPEAK AND SOME THAT
THINK YOU SHOULDN'T USE IT AT ALL.
IF YOU DO YOU'RE GOING TO GET KIDS WHO ARE GOING TO OPT FOR THE
EASY STREET AND NOT TALK.
AND GAYLE MCGUY USED TO BE ONE OF THE MAJOR PROPONENTS OF
THAT CAMP.
I'M A SPEECH PATHOLOGIST AND HAVE BEEN USING AUGMENTIVE
COMMUNICATION SINCE I WAS 19 AND I HAVE NEVER HAD A CHILD WHO
DIDN'T LEARN TO TALK BECAUSE OF THIS.
THERE ARE ALL KINDS OF WAYS TO AUGHT CHILDREN'S OUTPUT AND
UNDERSTANDING OF COMMUNICATIVE INPUT TO THEM.
AND ONE OF THE HOTTEST THINGS IN THE FIELD RIGHT NOW IS PICTURE
EXCHANGE COMMUNICATION.
SO, THIS IS SNACK TIME.
AND THE CHILDREN ARE BEING TAUGHT TO SPEAK AS THEY'RE BEING
TAUGHT TO INTENTIONALLY COMMUNICATE.
THIS CHILD IS SELECTING AN ICON FROM HIS ARRAY.
HE HANDS IT TO THE CLINICIAN.
SHE CONFIRMS WHAT ‫ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬S HIM SAY THE WORD
BECAUSE HE'S EMERGING VERBAL AND THEY'RE ALSO LEARNING TO
INITIATE JOINT ATTENTION.
HE DID THAT ON HIS OWN WITH AUTO PROMPT AND ALL OF THE KIDS
LEARNED TO TALK AND CAME IN NONVERBAL.
I'M NOT SAYING THAT EVERY CHILD WILL BUT THIS IS A GREAT TOOL
UNDERUTILIZED.
IN TERMS OF ENVIRONMENTAL ENGINEERING.
THIS IS AN ASPECT OF INTERVENTION THAT HAS A VERY BROAD BASE OF
EVIDENCE THAT TENDS TO HAVE VERY VERY SMALL ENDS.
SO, PEOPLE OFTEN THINK OF IT AS A NONEVIDENCE‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
BUT ACTUALLY THERE IS SOME EVIDENCE OUT THERE.
SO, THIS IS WHERE YOU STRUCTURE THE PHYSICAL SPACE, YOU
SPECIFICALLY CHOOSE TASKS AS AMI SAID THAT ARE AT THE RIGHT
LEVEL OF COMPLEXITY FOR THE CHILD.
THE LENGTH OF THE ACTIVITIES ARE ENGINEERED AND THEY CAN
MONITOR THEIR PROGRESS TOWARD THE GOAL.
WHERE YOU'RE REMOVING DISTRACTING MATERIALS THAT REDUCE SELF
STIMULATION AND INCREASE OFF TASK BEHAVIOR.
THIS HELPS CHILDREN TO TRANSITION TO NOVEL ACTIVITIES.
THESE ARE OUR 2‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
AND SO WHAT YOU'RE GOING TO SEE IS THAT WE USE AUDITORY AND
VISUAL CUES.
SOME KIDS KNOW EXACTLY WHERE TO GO.
AND YOU SEE WE MARK WITH THEIR FACES WHICH ONE IS THEIRS
BECAUSE WE'RE WORKING ON FACE RECOGNITION IN MANY MANY WAYS.
THIS CHILD NEEDS HAND OVER HAND AND THIS ONE IS INDEPENDENT
AND KNOWS EXACTLY WHERE TO GO AND EXCUSE ME, PLEASE, MAY I
GET TO MY TARGET?
AND MOVES ON TO THE NEXT THING.
MANY KIDS WITHOUT ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
TANTRUMS.
AND WE CAN PREVENT THEM BY ALTERING PHYSICAL CHARACTERISTICS
OF THE SETTING AND MODIFYING CRICK LUM AND SETTINGS AND SO
FORTH.
WE SHOULD NOT BE RESTRICTING OURSELVES TO ONE INSTRUCTIONAL
METHOD,OKAY?
INCLUSION IS A HUGE ISSUE FOR SCHOOL‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
AUTISM.
AND THIS IS EVIDENCE THAT INCLUSION PROVIDES MANY BENEFITS TO
CHILDREN WITH AUTISM AND WE CAN ACTUALLY BEGIN INCLUSION
MUCH EARLIER THAN WE THOUGHT WE COULD AND PROBABLY WITH
GREAT BENEFIT.
THERE NEEDS TO BE A LOT MORE RESEARCH ON THIS.
AND THE BIGGEST PROBLEM WITH INCLUSION TODAY IS THAT TEACHERS
AREN'T TRAINED IN AUTISM OR INSTRUCTIONAL METHODS OR HOW TO
ACTUALLY MAXIMIZE THE CHILDRENS' ABILITY.
THAT'S ONE OF THE REASONS WHY IT HASN'T BEEN AS SUCCESSFUL AS IT
COULD BE.
SO, I'M ACTUALLY GOING TO WORK BACKWARDS FROM ADULTS AND
ADOLESCENTS TREATMENT ISSUES.
THE TREATMENT ISSUES ARE A BIT DIFFERENT THAN THEY ARE WITH
YOUNGER KIDS AND SO ONE OF THE BIGGEST CHALLENGES FOR TEENS IS
THE COMORBIDITY.
THE COMORBID DISORDERS.
MANY OF THE KIDS HAVE SEVERE ATTENTION DEFICITS, PROBLEMS WITH
ANXIETY.
AND SOME HAVE COMPULSIVE TENDENCIES AND BEHAVIOR CAN
INTERFERE WITH TEACHING AND OFTEN TAKES THEM OUT OF THE
INCLUSIVE CLASSROOM.
SO, IT'S THIS AGE CHILD OR INDIVIDUAL WHO EVEN NEEDS THE TEACHER
TRAINING AND THE GUIDED PRACTICE EVEN TO A HEIGHTENED DEGREE.
AND YET THESE ARE THE INSTRUCTORS PROBABLY GET THE LEAST OF IT.
THEY'RE SENSORY PROCESSING DISORDERS AND ARE COMPLICATED AND
MAKE IT DIFFICULT TO NAVIGATE THE HALLS OF THE SCHOOL.
THEY HAVE A GREAT DEAL OF DIFFICULTY WITH SOCIAL SKILLS.
FOR EXAMPLE, THERE IS ‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AUTISM IN HIS SCHOOL WHO OFTEN GETS UP INTO MY SON'S FACE IN THE
HALLWAY AND HAS A ROPE LINE THAT HE STARTS ALL COMMUNICATION
WITH.
IF MY SON WAS NOT MY SON HE MIGHT NOT HAVE KNOWN WHAT TO DO
WITH THAT.
BUT HE HAS INTERACTION THAT THE CHILD HAS JOINED A COUPLE OF
THE CLUBS THAT MY SON IS IN AND IS IN AN INCLUSIVE ENVIRONMENT.
AND WITHOUT THAT SEGUE, THE CHILDREN BECOME MORE AND MORE
ISOLATED.
ACADEMIC AND VOCATIONAL SKILLS ARE IMPORTANT AT THIS POINT
PREPARING INDIVIDUALS FOR THE WORK FORCE.
MANY TIMES THIS GETS VERY COMPLICATED BECAUSE WHERE WE HAVE
A LOT OF DIFFICULTY WITH SCHOOL‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
THEY'RE TRULY CAPABLE OF.
SO MANY TIMES WE LET BEHAVIORS LOOK AT THE ACQUIRING MIND OF
WHAT THEY'RE CAPABLE OF AND HAVE IT A BIT LOWER PERHAPS OF
WHERE THE KIDS COULD BE.
AND SOMETIMES WE HAVE PEOPLE ADVOCATING FOR THE KIDS BEING IN
REGULAR ACADEMIC ENVIRONMENTS.
I WILL NEVER FORGET ONE NONVERBAL COMMUNICATION WITH A
COMMUNICATION SYSTEM AND INSISTED THE CHILD WITH INCLUDED IN
A SITUATION WITH NUMBERS.
AND THAT CHILD NEVER HAD AN OPPORTUNITY TO BUILD VOCATIONAL
SKILLS.
AND THE TUGS AND PULLS WITH ALL OF THE PARTIES INVOLVED AND
THE TREATMENTS ARE QUITE IMPORTANT AND NEED TO BE ADDRESSED.
FRIENDSHIPS AND RELATIONSHIPST NEED TO BE BUILT.
AND ALSO COMMUNITY‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
OKAY.
NOW IN THE PRIMARY GRADES, THE SAME ISSUES I MENTIONED ON THE
PREVIOUS SLIDE ARE EQUALLY IMPORTANT.
BUT AT THIS POINT IN TIME METHODOLOGY IS PAID ATTENTION TO MORE
BY THE SCHOOL SYSTEM.
WHAT'S HAPPENING IN THE SCHOOL SYSTEMS RIGHT NOW IS ONE OF
THREE THINGS IN MY EXPERIENCE.
ONE IS THAT THE SCHOOL SYSTEMS TEND TO BUY A PACKAGED
APPROACH AND SPEND TENS OF THOUSANDS OF DOLLARS TO HAVE THEM
INCORPORATED OR USE A GENERIC SPECIAL ED MODEL OR SEND THEIR
TEACHERS TO A COUPLE OF WORKSHOPS AND DO WHAT THEY CALL AN
ECLECTIC PROGRAM.
NONE OF THESE ARE OPTIMAL SO WE STILL HAVE A BIT MORE WORK TO
DO.
NOW WITH PRESCHOOLERS, THE RANGE OF ACTIVITIES IN WHICH KIDS
ARE INVOLVED IN HERE EDUCATIONALLY RANGE FROM HOME‫﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
TO 1 PROGRAMS AND OFTEN TIMES WITH PARAPROFESSIONALS ALL THE
WAY TO COMPREHENSIVE INTERVENTIONS THAT ARE IN THE PUBLIC
SCHOOL SETTING.
SO, IN GENERAL, WHAT THE LITERATURE SHOWS IS THAT KIDS WITH
AUTISM REGARDLESS OF AGE ARE MAKING WAYS IN SOCIAL, BEHAVIOR,
AND COGNITION.
AND SO FAR WE HAVE NOT FOUND THAT ONE METHOD IS SUPERIOR TO
ANOTHER IN TERMS OF GETTING THIS DONE.
WE ALSO KNOW THAT MOST CHILDREN WITH AUTISM CAN BE TAUGHT TO
TALK.
AGAIN SALLY ROGERS JUST PUBLISHED A PAPER WITH THE PICTURE AS I
MENTIONED EARLIER AND THERE WERE EQUAL NUMBERS IN BOTH
GROUPS WHO BECAME VERBAL.
WE CANNOT SAY THAT "X" APPROACH WORKS BEST FOR "Y" CHILD.
WHAT WE HAVE TO BE MOST CAREFUL ABOUT AT THIS TIME IS THAT WE
CAREFULLY MONITOR CHILDRENS' PROGRESS AND INTERVENTION SO WE
KNOW WHEN TO SWITCH TREATMENTS.
OKAY?
ALL RIGHT.
OKAY.
I WAS GOING TO REVIEW A LITTLE BIT ABOUT OUR TODDLER WORK BUT I
THINK I'M GOING TO SKIP THAT.
I WILL SHOW YOU REALLY QUICKLY THE KIND OF IMPACT THAT THE
TODDLER WORK HAS HAD.
WHAT YOU SEE IS A LITTLE GIRL HERE EARLY IN TREATMENT.
SHE IS VERY UNCOMFORTABLE BEING IN THE CHAIR.
ALL OF THE KIDS ARE NONVERBAL.
OVER THE FIRST COUPLE OF WEEKS OF THE INTERVENTION WE DID GET
ALL OF THE KIDS TO BE COMPLIANT ENOUGH TO SIT IN A CHAIR.
WHEN THE TEACHER SAYS 1, 2, 3, READY?
ALL OF THEM KNOW TO ORIENT TOWARDS THE TEACHER.
SHE TAUGHT THAT.
AND HIGH‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND REQUIRES HAND OVER HAND.
YOU SEE THAT HUMAN INTERACTION ISN'T SOMETHING THAT SHE'S
ACTUALLY LOFG ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
THIS IS HER 4 MONTHS LATER AND SHE IS VERBAL NOW AND SHE'S
LOOKING TO OTHER PEOPLE FOR HER CUES ON HOW TO INTERACT,
SMILING, AFFECT SHARING.
YOU CAN SEE SHE'S MONITORING HERSELF.
IF I LET THIS PLAY OUT FOR YOU, AT THE END SHE TURNS TO SHARE WITH
THE TEACHER.
THIS IS THE SWIMMING POOL AND THEY SIT WITH THEIR BACKS TO EACH
OTHER AND THIS IS WHAT HAPPENS DURING THE COURSE OF
INTERVENTION.
THIS IS TO SHOW YOU THE KIDS IN A CONDITION WHERE WE'RE
STRONGLY FOCUSING ON INTERPERSONAL, THESE KIDS HAVE ATTENTION
AND AFTER THE 6 MONTHS INTERVENTION ENDS, THAT GROWTH IS
SUSTAINED.
BUT IF WE DON'T SPECIFICALLY FOCUS ON THAT AND THE KIDS ARE IN
GREAT INTERVENTION BUT NOT FOCUSING ON WE SEE HUGE GAINS IN
THAT REGARD.
I WOULD LIKE TO TALK TO YOU NOW ABOUT THE PHARMACOLOGIC
INTERVENTIONS AND SO THERE ARE A NUMBER OF COMPOUNDS THAT
ARE USED IN PHARMACOLOGIC INTERVENTIONS FOR AUTISM INCLUDING
ATYPICAL ANTIPSYCHOTICS, SFRI STIMULANTS AND OTHER COMPOUNDS.
IN GENERAL KIDS BENEFIT FROM THESE INTERVENTIONS.
SOME KIDS DON'T.
HOWEVER, THESE DON'T COME WITHOUT RISKS.
SO, MOSTLY THE INTERVENTIONS ARE USED TO ADDRESS THE COMORBID
ASPECTS.
SIDE EFFECTS ARE SOMETIMES MORE OF AN ISSUE THAN THE DRUG IS A
BENEFIT.
AND THE DATA ON THE LONG‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
AVAILABLE GENERALLY.
THIS SLIDE IS FROM ‫﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
FROM UCLA.
AND THIS IS SHOWING THAT RESPRIDOL IS MORE EFFECTIVE ‫﷓ ﷓﷓ ﷓﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
PRETREATMENT IRRITABILITY IN AUTISM.
THESE ARE THE KID ON THE DRUG AND THESE ARE THE KIDS ON THE
PLACEBO.
THEY WERE WELL‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
AT THE END OF THE INTERVEJS, THE KIDS ON PLACEBO MADE NO CHANGE
‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓‬
WHERE AS THE IRRITABILITY WAS REDUCED SUBSTANTIALLY ON THE
KIDS ON THE DRUG.
THE SAME IMPACT IS SEEN ON REPETITIVE BEHAVIOR.
THIS IS PLACEBO, THE PINK LINE.
AND YOU DON'T SEE BENEFIT BUT THOSE ON THIS DRUG HAVE A DROP IN
REPETITIVE BEHAVIORS. AND THERE ARE AGENTS FOR HYPERACTIVITY
AND I'VE LISTED WHAT SOME OF THEM ARE AND ALSO THE SSRIs.
COLANDER'S WORK IS TELLING US THAT THE MEASURE OF REPETITIVE
BEHAVIOR IS ONE OF THE MAJOR INDICES OF IMPROVEMENT AND WE SEE
IMPROVEMENT IN ANXIETY IN CHILDREN WITH THE DRUG.
THIS SLIDE IS JUST TO SAY THERE ARE DECISION TREES IN THE USE OF
PSYCHOPHARMACOLOGIC AGENTS AND THIS IS ALL VERY
WELL‫﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
SO I JUST GIVE YOU A LITTLE BIT OF CONFIDENCE IN THE PEOPLE WHO
ARE USING PSYCHOPHARM.
SECRETEMENTS ARE VERY (INAUDIBLE) TREATMENT EXPERIENCE FOR
MANY OF US.
SECRETEIN IS SOMETHING THAT PARENTS CAME ON TV, SAID THEIR
CHILDREN HAD BEEN GIVEN AN INJECTION OF THIS AS THEIR CHILD WENT
IN FOR A GI STUDY AND THAT THEIR CHILD'S AUTISM WAS CURED.
ALL OF THE PARENTS HOPPED ON THE BAND WAGON IT SEEMS AND NIH
FUNDED THROUGH THE CTPA NETWORK A CONSIDERABLE PLACEBO
DRUG TREATMENT AND IT HAD GREATER IMPROVEMENT THAN SECRETIN
AND THIS IS AN INTERVENTION THAT GOT A LOT OF PUBLIC PLAY ALL
OVER THE INTERNET AND ACTUALLY DIDN'T BENEFIT CHILDREN WHEN
LOOKED AT ACROSS VARIOUS SITES.
SO WE DO HAVE TO BE CAREFUL ABOUT WHAT'S HAPPENING IN THE
PUBLIC DOMAIN AND CONSIDER IT CAREFULLY.
ESPECIALLY IF THERE COULD BE POTENTIALLY HARMFUL EFFECTS.
SO, THE NEXT SET OF SLIDES YOU HAVE HAVE TO DO WITH
COMPLIMENTARY ALTERNATIVE BIOLOGICAL INTERVENTIONS AND THEN
I HAVE ANOTHER SET OF SLIDES THAT FOCUS ON THE NONBIOLOGICAL.
AND THE BIOLOGICAL ONES ARE AIMED AT ET LOGIC PROPOSED.
AS AMI SAID, WE DON'T REALLY KNOW WHAT THESE ARE.
BUT THERE ARE A VARIETY OF THEORIES OUT THERE.
MANY ARE REASONABLE THEORIES.
THE DIETARY AND NUTRITIONAL SUPPLEMENTS AND SPECIAL DIETS TEND
TO BE THE BIGGEST WAVE OF CAM TREATMENTS RIGHT NOW ALTHOUGH
THERE ARE MANY AND I HAVE LISTED THEM HERE.
AND THERE IS A VERY GOOD STUDY GOING ON RIGHT NOW ON THE
GLUTEN‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬SHE'S NOT
PREPARED YET TO SHARE HER FINDINGS OF THAT.
BUT IT'S A VERY GOOD STUDY.
I WANTED TO PROVIDE YOU WITH THE INFORMATION SO YOU WOULD
KNOW WHERE TO LOOK FOR INFORMATION ABOUT IT.
BUT SUSAN HIMAN AND SUSAN LIDEE PUBLISHED GOOD PAPERS THAT
YOU CAN LOOK AT AND I WILL HAVE THAT REFERENCE FOR YOU.
MY TIME IS UP BUT I JUST WANTED TO END BY SAYING THAT YOU CAN
ALSO FIND WHAT'S BEING FUNDED BY THE FEDERAL AGENCIES ON THESE
CAM TREATMENTS.
ALSO AUTISM SPEAKS IS FUNDING FROM CAM PILOT STUDIES.
THESE APPLICATIONS ARE UNDER REVIEW AT THIS TIME.
THERE IS ALSO POLICY ISSUES THAT I'M NOT GOING TO HAVE A CHANCE
TO DISCUSS THAT ARE VERY IMPORTANT IN AUTISM.
AND MANY OF THE THINGS THAT AMI MENTIONED THIS MORNING ARE
TRUE IN TERMS OF WE HAVE A LITTLE BIT MORE KNOWLEDGE ABOUT
AUTISM THAT HAS MADE ITS WAY INTO SOME OF THE POLICIES.
THIS IS GOING TO TAKE A LOT OF PUBLIC/PRIVATE PARTNERSHIPS TO
WORK THIS OUT.
AND IN CONCLUSION, AS YOU HAVE PROBABLY GATHERED FROM MY
TALK THIS MORNING WE DO NEED MORE INTERVENTION RESEARCH.
WE ALSO SHOULDN'T WAIT TO TAKE WHAT WE ALREADY KNOW ABOUT
INTERVENTION AND GET IT INTO THE PUBLIC DOMAIN.
WE NEED BETTER PERSONAL PREP PROGRAMS AND HAVING
INTERVENTION BEGIN TO IMPACT POLICY.
WE ALSO NEED TO HELP FAMILIES BEGIN TO HAVE A BETTER SCALE FOR
WEIGHING WHEN TO JUMP INTO SOME OF THESE CAM INTERVENTIONS.
OKAY?
THAT'S IT FOR ME.
[APPLAUSE]
THANK YOU.
>>: DR. RICHARD GRINKER IS GOING TO JOIN US NOW.
HE'S A PROFESSOR OF ANTHROPOLOGY, HUMAN SCIENTISTS AND
INTERNATIONAL AFFAIRS AT GEORGE WASHINGTON UNIVERSITY.
AND PUBLISHED BOOKS AND ARTICLES ON AUTISM AND ETHNIC
CONFLICT.
THIS IS DR. RICHARD GRINKER.
[WHISPERING]
>>: CAN YOU HEAR ME?
ALL RIGHT.
WELL THANK YOU FOR THE INVITATION TO SPEAK HERE.
I'M GOING TO TALK TODAY ABOUT HOW I CAME TO UNDERSTAND AUTISM
AS A CONCEPT.
IS THE VOLUME OKAY BACK THERE?
HOW WE CAME TO UNDERSTAND AUTISM AS A CONCEPT THROUGH TWO
DIFFERENT SETS OF EXPERIENCES.
THE FIRST IS AS A PARENT OF A CHILD WITH AUTISM, MY DAUGHTER
ISABELLE WHO IS NOW 16 YEARS OLD.
AND THE SECOND IS THROUGH MY EXPERIENCES AS AN AN THROW POLL
GIST WORKING CROSS CULTURALLY ON AUTISM.
ISABELLE WAS DIAGNOSED IN 1994 IT WAS WAS FIRST EVALUATED
THROUGH KENNEDY KRIEGER AND KNOWS DR. LANDA.
SHE KNOWS HER WELL.
DURING THE PERIOD OF TIME IN 1994 AND THIS PERIOD OF 13 YEARS IS
THE PERIOD WHEN WE HAVE SEEN THE MOST DRAMATIC CHANGE IN THE
CONCEPTS OF AUTISM.
IT'S THE PERIOD IN WHICH WE HAVE SEEN NOT JUST THE DIAGNOSTIC
CONCEPT OF AUTISM CHANGE BUT ALSO SIGNIFICANT CHANGES IN HOW
PEOPLE WITH AUTISM ‫ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬E BEEN
INTEGRATED INTO LOCAL COMMUNITIES.
AND INTO MEDIA REPRESENTATIONS AS WELL.
AND HOPEFULLY I WILL BE ABLE TO MENTION THAT A LITTLE BIT.
WHEN I SPEAK TO PEOPLE WHO ARE NOT ANTHROPOLOGISTS ARE
SURPRISED.
THEY HAVE NOT HEARD ANTHROPOLOGISTS TALK ABOUT ILLNESS BUT
IT'S UNUSUAL FOR ANTHROPOLOGISTS TO GET THAT KIND OF REACTION
BECAUSE MEDICAL ANTHROPOLOGY IS A PRETTY WELL‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
SUBFIELD.
WE STUDY HOW DIFFERENT SOCIETIES CLASSIFY, IDENTIFY, AND TREAT
ILLNESSES.
BUT THIS SEPARATION OF ILLNESS AND CULTURE IS SOMETHING THAT
JUST HIGHLIGHTS HOW INSULATED SOMETIMES PATIENTS, SCIENTIFIC
MEDICAL COMMUNITIES CAN BE FROM DISCOURSES ABOUT CULTURE.
MEDICAL SCHOOLS DON'T TEACH A LOT ABOUT CULTURE.
CULTURE REMAINS THE RESIDUE.
IT'S SORT OF THE THINGS YOU USE WHEN ALL OTHER EXPLANATIONS
FAIL.
AND IT'S VERY COMMON IN CONFERENCES THAT I ATTEND TO SEE
CULTURE DISMISSED AS A VARIABLE IN THE IDENTIFICATION OR
TREATMENT OF A DISORDER OFTEN BECAUSE OF BIOMEDICAL OR OTHER
NATURALISTIC EXPLANATIONS, NONCULTURAL EXPLANATIONS SEEM SO
INCREDIBLY CONVINCING.
IT'S VERY HARD TO SEE AN ILLNESS AS A CULTURAL ‫﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓‬
TEACHER AND I'M A PROFESSOR AND TEACH GRADUATE AND
UNDERGRADUATE STUDENTS.
YOU NEVER ENCOUNTER MORE THAN WHEN YOU'RE TRYING TO SHOW
PEOPLE THEIR ASSUMPTIONS ARE ROOTED IN CULTURAL OR SOCIAL
HISTORY.
HOW COULD IT BE THAT THROUGHOUT THE 16TH‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
BELIEVED THAT THERE WERE ONLY ONE SEX IN THE WORLD AND THAT
MEN AND WOMEN WERE ON A CONTINUUM.
THEY HAD NO CULTURAL REASON TO SEPARATE HUMAN BEINGS INTO
TWO DISTINCT SENSES UNTIL THE FIRST INDUSTRIAL REVOLUTION.
HOW COULD IT BE POSSIBLE THERE WAS NO HOMOSEXUALITY IN
GREECE?
IT WAS NOT DISTINGUISHED AT ALL FROM ANY OTHER KIND OF SEX
PERFORMED ASSOCIATE TO THE SOCIAL HIERARCHY AT THE TIME.
AND HOW COULD IT BE THAT PEOPLE MISSED AUTISM FOR ALL OF THE
YEARS AND ALL OF A SUDDEN WE HAVE THE CASES, 1 IN 150 AND ONLY
15‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
THERE MUST BE AN EPIDEMIC TODAY BECAUSE IT WAS NOT SOMETHING I
SAW BEFORE.
THESE SORTS OF CHANGES WHETHER IT'S THE CONCEPT OF
HOMOSEXUALITY OR THE SEPARATION OF HUMAN BEINGS INTO TWO
SEXES OR EVEN THE QUOTE, UNQUOTE, EPIDEMIC OF AUTISM CAME
ABOUT NOT BECAUSE OF NEW SCIENTIFIC DISCOVERIES.
THEY CAME ABOUT BECAUSE OF SOCIAL AND CULTURAL HISTORIES.
IT WASN'T SURPRISING THAT PEOPLE WOULD COME TO ME AND SAY
YOU'RE A DAD, AN AN THROW POLL GIST.
HOW DOES AUTISM FIRST MANIFEST ITSELF IN THE SOUTH PACIFIC?
WHAT DO PEOPLE DO ABOUT AUTISM IN TIBET?
WE KNOW VERY LITTLE ABOUT AUTISM ACROSS CULTURES.
THERE HAS NEVER BEEN A PREVALENCE STUDY IN ANY AFRICAN
COUNTRY.
KOREA HAS A ROBUST MEDICAL SYSTEM AND INDIA, THERE HAS NEVER
BEEN A PREVALENCE STUDY IN ANY OF THESE PLACES.
SO, ONE OF THE THINGS I DID WAS I DECIDED TO GO AROUND THE WORLD
AND TO GO TO VARIOUS COUNTRIES AND SEE WHAT WAS GOING ON.
I TALKED TO PARENTS AND I TALKED TO PROFESSIONALS, I TALKED TO
PEOPLE IN GOVERNMENTS.
I WENT TO SCHOOLS AND I MET CHILDREN.
AND I FOUND THAT AUTISM WAS SLOWLY BUT SURELY BECOMING MORE
AND MORE EVERYDAY.
IT WAS MORE AND MORE PART OF EVERYDAY LANGUAGE IN DISCOURSE.
PEOPLE WERE EVEN IN REMOTE AREAS OF THE WORLD STARTING TO
KNOW WHAT THIS WORD MEANT AND HOW IS THIS HAPPENING?
THE GLOBAL FLOW OF INFORMATION CERTAINLY IS A KEY HERE.
BUT SOMETHING ELSE WAS HAPPENING TOO: WHICH WAS PEOPLE WERE
LEAVING THEIR RURAL AREAS, THE PLACES WHERE THEY HAD VERY
EXTENSIVE SOCIAL NETWORKS AND WERE GOING TO THE CITIES AND IN
THE CITIES WHERE THEY NO LONGER HAD THE SUPPORTS THEY HAD TO
GET SOME HELP.

WHEN THEIR CHILD WAS DEVELOPING RIGHT, WHEN SOMETHING WAS AN
ISSUE, THEY HAD TO GET SOME KIND OF HELP.
WHEN THEY DIDN'T GET IT, THEY STARTED TO ADVOCATE.
AND I WANT TO TELL YOU JUST A VERY SHORT ANECDOTE.
IN MY FIELD, THE PLURAL OF ANECDOTE IS DATA.
[CHUCKLING]
SO I WAS IN SOUTH AFRICA AND I MET THIS WONDERFUL COUPLE,
SUZANNE AND ANOTHER PERSON THAT WERE ZULUS AND THEIR LITTLE
BOY WHOSE NAME IRONICALLY IS BIG BOY AND HE'S VERY SMALL.
BIG BOY STARTED TO DEVELOP A BUNCH OF DIFFERENT ISSUES AROUND
THE AGE OF 2.
HE WAS FLAPPING HIS ARMS, HE WAS NOT MAKING EYE CONTACT, HE
WAS NOT TALKING.
HE HAD ALL OF THE SYMPTOMS THAT WOULD INDICATE THE ONSET ‫﷓ ﷓ ﷓‬
THE EMERGENCE OF IDENTIFIABLE SPECTRUM DISORDER.
AND WERE READY TO TAKE HIM TO THE HOSPITAL AND THE
GRANDPARENTS SAID, NO, YOU CAN'T DO THAT.
THIS BOY IS POSSESSED BY A DEMON.
HE CAN'T GO TO A WHITE DOCTOR FOR THAT.
YOU HAVE TO TAKE HIM TO THE WITCH DOCTOR.
SUZANNA AND GOLDEN ARE NOT EDUCATED AT ALL, REALLY.
I THINK THEY WENT THROUGH 7TH OR 8TH GRADE AND SEEMED TO BE
VERY CONTEMPORARY.
AND THEY THINK THAT WITCH DIRECTORS ARE ALL SHYSTERS AND HAD
AN ENORMOUS FAMILY FIGHT AND IT THREATENED TO DESTROY THE
LINEAGE.
SO, SUZANNE AND GOLDEN GAVE US AND SAID, OKAY, WE WILL TAKE
HIM TO THE WITCH DOCTOR.
NOW THEY DID THIS AT GREAT RISK, THEY FELT BECAUSE THE WITCH
DOCTOR WAS GOING TO MAKE BIG BOY VOMIT AND TAKE LAXATIVES TO
EXPEL THE EVIL IN HIS BOWELS AND OTHER THINGS THEY FEARED
WOULD BE TRAUMATIC TO BIG BOY.
AND BROUGHT HIM TO A WITCH DOCTOR WHO LIVED IN A HOME STEAD
AND HAS A BIG COMPOUND AND YOU HAVE TO LEAVE YOUR KIDS THERE
OR WHATEVER DIAGNOSED FOR 2 DAYS.
THEY CAME BACK AFTER 2 DAYS AND THE WITCH DOCTOR CAME OUT
AND SAID I KNOW WHAT'S WRONG WITH BIG BOY.
HE HAS AUTISM.
[LAUGHTER]
THIS PERSON EXPLAINED AUTISM TO SUZANNA AND GOLDEN AND
EXPLAINED IT TO THEM AS TO WHAT HE CALLED THE WHITE MAN'S
DISEASE.
HOW DID HE LEARN ABOUT IT?
ON THE INTERNET.
ANTHROPOLOGISTS LOVE TO DO RESEARCH ON THINGS THAT ARE IN
EXOTIC, REMOTE LOCALES.
BUT ONE OF THE THINGS THAT THEY FORGET ABOUT IN THEIR ZEST FOR
GOING TO OTHER COUNTRIES IS EVENTUALLY WE COME HOME.
AND THEN WE REALIZE WHY WE WENT AWAY IN THE FIRST PLACE:
PARTLY TO UNDERSTAND ANOTHER SOCIETY.
BUT ALSO TO COME HOME AND SEE OUR OWN CULTURE IN A NEW LIGHT.
IT'S LIKE WHEN YOU GO TO EUROPE AND YOU SEE THE CARS LOOK SO
SMALL AND THEN YOU GET USED TO IT AND COME HOME AND THE ROADS
AND CARS LOOK SO BIG.
IT'S ABOUT GETTING A DIFFERENT PERSPECTIVE THAT WE WOULDN'T
HAVE OTHERWISE.
WHEN I CAME HOME AND LOOKED AT MY OWN COMMUNITY AND
LOOKED AT MY OWN CHILD AND HER COMMUNITY I SAW THAT THE
CURRENT CRISIS ABOUT AUTISM WAS AN ACHIEVEMENT.
IT WASN'T A CRISIS.
IT WAS AN ACHIEVEMENT THAT WAS LED BY EARLY CHILDHOOD
EDUCATEORS AND SPEECH PATHOLOGISTS AND ALL SORTS OF OTHER
PROFESSIONALS WHO WORK TO RAISE AWARENESS AND
UNDERSTANDING OF WHAT FOR SO LONG HAS NOT BEEN UNDERSTOOD IN
A WAY THAT'S BEEN BENEFICIAL AND THAT THE CONCEPT OF AUTISM
HAD BECOME A BENEFICIAL CONCEPT.
NOBODY LIKES LABELS BUT A LABEL IS GOOD IF THERE IS SOME BENEFIT
TO IT.
AND THAT'S WHAT WAS HAPPENING I THOUGHT.
AND I ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓‬
OTHER FAMILY HAS TO DEAL WITH.
LIKE A CHART THAT I WANT TO PULL UP HERE WHICH WAS ALL OVER THE
NEWS.
IT WAS IN CONGRESS, DAN BURTON INTRODUCED IT INTO CONGRESS.
IT WAS FROM THE STATE OF CALIFORNIA AND IT LOOKS FREIGHTENNING.
WHEN WE SEE LINES GO FROM BOTTOM TO TOP WE GET SCARED.
THERE IS AN INCREASE IN SOMETHING.
AND THIS IS ABSOLUTELY A FANTASTIC ‫﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
GRAPH.
THIS IS ONE OF THE BEST GRAPHS I'VE EVER SEEN FOR TEACHING.
IT APPEARS TO SHOW A PRESIPITOUS RISE IN CASES OF AUTISM OVER
TIME.
WHEN, IN FACT, IT IS A SNAPSHOT FROM 1995 OF THE AGES OF CHILDREN
WHO ARE BEING GIVEN SERVICES UNDER CALIFORNIA'S REGIONAL
CENTERS UNDER THE CLASSIFICATION OF "AUTISM".
WHY THE STATISTICIAN DREW A LINE BETWEEN ALL OF THESE DOTS IS
BEYOND ME.
I HAVE NO IDEA.
[CHUCKLING]
BECAUSE IT DOESN'T MAKE ANY SENSE TO DO THAT.
WHAT I DID DO WAS I WENT BACK TO THE ORIGINAL DATA.
FIRST THING I DISCOVERED BY THE WAY WAS THAT EVERYWHERE IN
EVERY PUBLICATION, EVEN IN THE LANSET SAYS THIS IS FROM 1991.
IT IS, IN FACT, FROM 1995.
BUT THAT'S WHAT I FOUND WHEN I LOOKED AT THE DATA.
AND I TOOK THE DATA AND ARRANGED THEM AS A BAR GRAPH.
AND IT LOOKS A LOT DIFFERENT WHEN YOU LOOK AT IT THAT WAY.
IN FACT YOU MIGHT SAY, HEY, GREAT, EARLY INTERVENTION, IT'S
WORKING.
WE'RE GETTING KIDS INTO THE SYSTEM YOUNGER AND WE'RE GETTING
MORE TREATMENT.
AND IT LOOKS LIKE MOST OF THE KIDS ‫﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
DEVELOPMENTAL PROGRAM YOU'RE GOING TO HAVE MORE
5‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
SO I STARTED TO LOOK AT HOW AWARENESS AND VISION ‫﷓ ﷓ ﷓ ﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
VISION FIGURATIVELY AFFECTS THE WAY WE THINK AND CONCEIVE
ABOUT A DISORDER.
AND YOU KNOW THERE ARE THINGS WE SEE EVERYDAY BUT WE DON'T
REALLY SEE IT.
AND THEN WHEN WE SEE IT, SOMEBODY POINTS IT OUT TO US.
AND WE SAY, WHY DIDN'T I EVER SEE THAT BEFORE?
I DON'T KNOW.
THERE ARE PROBABLY PEOPLE IN HERE NOW WHO ARE PREGNANT OR
HAVE CHILDREN WHO ARE 2, 3 YEARS OLD.
IF YOU'RE PREGNANT, YOU SEE LOTS OF PREGNANT WOMEN.
IF YOU HAVE A 5 YEAR‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓‬
WELL, HERE IS SOMETHING YOU SEE EVERYDAY.
WHOOPS, THAT'S NOT IT.
YOU SEE THIS LOGO.
YOU SEE IT ON YOUR, YOU KNOW, TRUCKS AND KIOSKS IS
ADVERTISEMENTS, ON YOUR DESK.
YOU SEE IT EVERYWHERE.
BUT WHAT MOST PEOPLE DON'T SEE IS THIS.
THAT THERE IS THIS BEAUTIFUL YELLOW ARROW IN THE NEGATIVE
SPACE.
NOW IF YOU GO BACK YOUR EYE WILL GO RIGHT TO IT AND YOU WILL
NEVER SEE THAT THE SAME WAY AGAIN.
[CHUCKLING]
AND ANYTIME YOU LEAVE HERE TODAY AND YOU'RE GONNA GO AND
YOU'RE GONNA SAY, MAN, THAT GUY!
[CHUCKLING]
NOW I'M ALWAYS LOOKING STRAIGHT AT THAT THING!
[LAUGHTER]
BUT ONCE YOU SEE SOMETHING NEW IT JUST SHOWS YOU HOW ATTUNED
WE CAN BECOME AND HOW PRIMED WE CAN BECOME TO SEEING
SOMETHING THAT WE NEVER SAW BEFORE.
NOBODY MISSED AUTISM IN THE PAST.
IT WAS CATEGORIZED AND CLASSIFIED DIFFERENTLY.
AS RECENTLY AS THE 1970'S BELL VIEW AND NEW YORK HAD SEVERAL
THOUSANDS OF CASES ON FILE OF CHILDHOOD SCHIZOPHRENIA, A
DISORDER AT NIH HAS SHOWN IS VERY RARE.
THESE KIDS WERE PROBABLY AUTISTIC IN 15, 16, 17 YEARS SHE HAS BEEN
SEARCHING THE GLOBAL WITH CHILDREN WITH CHILDHOOD
SCHIZOPHRENIA.
BELL VIEW, PEOPLE WERE CLASSIFIED DIFFERENTLY.
AMI TALKED ABOUT HOW LEO LOOKED AT DESCRIPTIONS BACK IN 1943.
BACK THEN, KIDS WITH SEIZURES AND MENTAL RETARDATION DIDN'T
GET DIAGNOSED WITH AUTISM.
YOU KNOW, YOU LOOK THROUGH OLD PEDIATRICIANS FROM FUNNY
LOOKING KID WITH OBSESSIVE COMPULSIVE WITH BLOCK IN SEIZURES.
IT LOOKS TO ME LIKE WE'RE JUST GETTING IT RIGHT.
AND I'VE SEEN THESE CHANGES FIRST‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
OCCURRED DURING THE TIME THAT MY DAUGHTER WAS GROWING UP.
AND TODAY SHE'S 16 AND I SEE THESE CHANGES EVERYDAY.
I'M NOT A POLY ANNA BUT I APPRECIATE HOW FAR WE HAVE COME.
MY DAUGHTER ISABELLE LOVES ANIMALS.
SHE'S ON THE COMPUTER ALL THE TIME DOWN LOADING ZOO MAPS. AND
SHE KNOWS THE ZOO MAPS AND THE CLEVELAND OR CINCINNATI, AND
WHEN WE GO SHE WILL KNOW HER WAY AROUND.
SHE DECIDED SHE WANTED TO VOLUNTEER AT A ZOO.
AND SO I CALLED THE NATIONAL ZOO AND I SAID, I HAVE A CHILD WHO IS
16 WHO IS INTERESTED IN DOING SOMETHING AT THE ZOO.
AND YOU KNOW I WROTE A WHOLE BOOK ON MY CHILD.
I TALK TO AUDIENCES ABOUT MY CHILD AND STILL MY HEART'S
POUNDING BECAUSE I HAVE TO TALK TO THEM ABOUT THE AUTISM AND
THE PROBLEMS AND THE PERSON ON THE PHONE SAID, OH, YEAH, WE
HAVE HAD KIDS WITH AUTISM HERE VOLUNTEERING.
THAT'S NOT A PROBLEM.
YOU CAN COME WITH HER TO THE INTER‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓‬
THAT WOULD NOT HAVE HAPPENED 10 OR 20 YEARS AGO.
WHEN I WAS GROWING UP IN CHICAGO IN THE EARLY '60s, 1970'S, IF A
CHILD HAD A MATH TUTOR IT WAS HUSH, HUSH.
[CHUCKLING]
THE STIGMA WAS JUST SO EXTRAORDINARY.
WE WOULD HOLD OUR BREATH GOING BY A SCHOOL FOR SPECIAL
EDUCATION SO WE WOULDN'T "GET" WHATEVER THEY HAD.
AND MY FATHER LOVED THE UNIVERSITY OF CHICAGO WOULD TAKE ME
BY THE ORTHO GENIC SCHOOL AND I WOULD SEE IT FOR AUTISM AND
CHILDHOOD SCHIZOPHRENIA AND I THOUGHT THAT WAS LIKE A PRISON.
THINGS HAVE CHANGED.
THEY HAVE CHANGED CONSIDERABLY.
WHEN WE LOOK AT THE PREVALENCE RATES NOW WE CAN'T COMPARE
THEM TO PREVALENCE RATES 20 YEARS AGO. AND YOU CAN'T COMPARE
THEM TO PREVALENCE RATES EVEN 10 YEARS AGO BECAUSE THE
METHODS AND CONCEPTS WERE DIFFERENT.
AND TODAY THERE ARE DIFFERENT STUDIES GOING ON.
THE CDC STUDY THAT LOOKED AT CHARTS THEY DIDN'T SEE CHILDREN.
AND I'M DOING A STUDY IN KOREA THAT WE THOUGHT WERE AUTISTIC
WE HAVE ACTUALLY EXAMINED.
AND GIVEN ADOSS.
JUST AS A WARNING SINCE YOU'RE ALL NIH PEOPLE, IF YOU EVER DO SEE
PEOPLE USE THE WORD PREVALENCE, THAT'S THE RIGHT WORD FOR THE
PROPORTION.
BUT IF YOU SEE THE WORD "INCIDENCE" BE AWARE BECAUSE PROBABLY
THEY'RE NOT TALKING ABOUT INCIDENCE.
THERE IS A DISTINCTION BETWEEN INCIDENCE AND PREVALENCE.
AMI COULDN'T GET TO IT IN HIS TALK BECAUSE HE DIDN'T HAVE ENOUGH
TIME.
I CAN CERTAINLY TALK ABOUT THIS MORE IF WE HAVE A
QUESTION‫ ﷓ ﷓ ﷓‬D‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
LET ME TELL YOU ABOUT CULTURE ABROAD AND AT HOME.
WHEN ISABELLE WAS FIRST DIAGNOSED IT WAS REALLY OUR
PEDIATRICIAN WHO RAISED THE RED FLAG AND SAID I THINK SHE MIGHT
HAVE AUTISM AND SHE REFERRED TO US TO SOMEBODY WHO WAS A
PSYCHOANALYST.
AND WE WENT TO THE PSYCHOANALYST AND IT WAS A VERY
INTERESTING MEETING.
MY WIFE AND I WERE SITTING THERE AND HE WAS JUST LOOKING AT MY
WIFE.
HE WAS NOT LOOKING AT ME AT ALL.
AND HE WAS ASKING A LOT OF QUESTIONS.
WERE THERE ANY COMPLICATION IN YOUR PREGNANCY?
DO YOU SMOKE?
DO YOU DRINK?
DID YOU BREAST FEED?
HOW LONG DID YOU BREAST FEED?
DO YOU LIKE BREAST FEEDING?
DID YOU WEAN HER SOONER THAN YOU THINK YOU SHOULD HAVE?
DID YOU FEEL CLOSE TO YOUR CHILD?
I CAN SEE THESE THINGS COMING FROM A MILE AWAY BECAUSE I COME
FROM A LONG LINE OF PSYCHOANALYSTS.
MY FATHER, GRAND FATHER AND GREAT GRAND FATHER WERE
PSYCHOANALYSTS.
I'M A GREAT DISAPPOINTMENT TO MY FAMILY, BY THE WAY.
[CHUCKLING]
ABOUT 2 AND A HALF OR 3 WEEKS AGO I WAS TALKING TO THE
DEPARTMENT OF PSYCHIATRY AT THE UCLA.
AND A WOMAN IN HER 90'S CAME UP TO MY AFTERWARDS AND SAID I
WAS A PATIENT OF YOUR GRAND FATHERS IN 1947 HE TOLD ME MY PURSE
WAS A VAGINA.
[LAUGHTER]
I COULD SPOT THESE BIG, YOU KNOW, UMBRELLA OR SORT OF VULGAR
FREUDIANISMS FROM A MILE AWAY.
AND THIS PERSON WE SAW IN 1994 WAS CLEARLY, CLEARLY PLACING
BLAME ON MY WIFE IN A VERY ROUND‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
SO THIS IS REALLY AN EXAMPLE OF HOW ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
YOU THAT THE REFRIGERATOR MOTHER IS DEAD.
YOU CAN SEE IT ALIVE AND ESPECIALLY IN OTHER CULTURES.
AND IN FRANCE WHERE THERE IS A BIG DISTINCTION BETWEEN THE FIELD
OF PSYCHIATRY FOR ADULTS AND PSYCHIATRY FOR CHILDREN.
NOW PSYCHOANALYSIS WAS INITIALLY REJECTED IN FRANCE IN THE
EARLY PART OF THE 20TH CENTURY FOR THE SAME REASONS IT WAS
ACTUALLY ACCEPTED IN THE UNITED STATES, THE IDEA OF AN
AUTONOMOUS SELF.
IT WAS INTRODUCED AT A TIME WITH THE OBSESSION OF PLASTICITY OF
CELLS AND FRANCE WAS SELF SATISFIED WITH THE CHARLEMAGNE AND
ALL THE WAY UP TO THE CHILD IN THE PUBLIC SCHOOLS.
AND IT WAS ONLY VERY LATE ‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓‬
PSYCHOANALYSTS LIKE JACQUES LACANT INTRODUCED THE IDEA THAT
MAYBE HISTORICAL CONTINUITY WASN'T BENIGN AND MAYBE IT WAS
CIVILIZATION.
EVEN FRENCH CIVILIZATION THAT COULD BE INSIDIOUS AND HAVE AN
INSIDIOUS PRESENCE IN FRENCH SOCIETY AND IT WAS IN OPPOSITION IN
PSYCHIATRY THAT THE FRENCH GASPED ONTO PSYCHOANALYSIS AND
BECAME TO THE UNDERSTANDING OF CHILDHOOD UNDERSTANDING.
AND IT WAS NOT UNTIL 2004 THAT THE FRENCH PSYCHIATRIC
ESTABLISHMENT DECIDED THAT ATUSM WAS NOT A PSYCHOSIS ‫﷓ ﷓ ﷓‬
AUTISM.
YOU CAN GO TO THE DSM1 AND 2 AND 3 IN 1980 AND YOU CAN TRACE THE
SORT OF PATTERN IN AMERICAN PSYCHIATRY AND AUTISM WAS
CERTAINLY INCLUDED ONLY UNDER THE DIAGNOSTIC PSYCHIATRY FOR
CHILDHOOD SCHIZOPHRENIA.
BUT THIS IS REALLY LATE, 2004.
IT WAS AS IF FRANCE WAS ITS OWN WORLD AND INSULATED FROM IT.
IN FACT THEY HAVE THEIR OWN MANUAL AND DON'T OFTEN USE THE
DSM BECAUSE THEY HAVE THEIR OWN MANUAL FOR THE
CLASSIFICATION OF CHILDHOOD MENTAL DISORDERS.
THE PARADIGM MUCH AT PLAY IN FRANCE IS IF THE CHILD IS AUTISTIC
YOU TREAT THE MOTHER BECAUSE IT'S THE CHILD'S PROBLEM BUT
EARLY PARENTAL CHILD DETACHMENT.
NOW LET'S GO TO ANOTHER PART OF THE WORLD, SOUTH KOREA WHERE I
STARTED AN EPIDEMIOLOGIC STUDY A FEW YEARS AGO AND WE'RE JUST
FINISHING UP AND PROBABLY AND WILL PUBLISH OUR RESULTS IN
ABOUT A YEAR, NEXT FALL.
AND THERE, SCIENTISTS AND GOVERNMENT OFFICIALS SAID YOU'RE NOT
GOING TO FIND ANY AUTISM IN CREE ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
WE DON'T HAVE THAT.
BUT YOU WILL HAVE THIS DISORDER WHICH IS CALLED (DIFFERENT
LANGUAGE).
AND RAD IS THOUGHT TO BE A DISORDER OF MIMICKING AUTISM IN
WHICH A CHILD IS AFFECTED BY PATHOLOGICAL CARE.
THE NATURE IS USUALLY A WORKING MOTHER THEREFORE NOT WITH
THE CHILD. AND BY CALLING RAD SIMPLY ATTACHMENT DISORDER
WHICH IS OFTEN WHAT THEY DO IS BLAME CAN BE CLEARLY PLACED ON
THE MOTHER.
WHAT'S FASCINATING ABOUT KOREA IS IT'S A REALLY POPULAR
DIAGNOSIS AND MOTHERS ARE WILLING TO EMBRACE IT.
UNLIKE AUTISM, RAD OR LACK OF LOVE CAN BE HELPED WITH GIVING
LOVE.
WHERE AS AUTISM IS AN UNCURABLE CONDITION.
SECONDLY, R.A.D. IS NOT A GENETIC CONDITION.
THEREFORE, THE FAMILY IS NOT INPUGNED.
THE LINEAGE GOES ALL OF THE WAY TO THE ANCESTORS, IT'S THE
MOTHER.
SHE ACCEPTS BLAME BECAUSE THE OTHER SIBLINGS WILL HAVE NO
PROBLEM GETTING MARRIED.
AND NOBODY WILL THINK THIS FAMILY HAS A GENETIC ABNORMALITY.
AND THE THIRD REASON IT'S POPULAR IS R.A.D. MAKES SENSE.
KOREA HAS GONE FROM BEING ONE OF THE POOREST COUNTRIES IN THE
WORLD AFTER THE KOREAN WAR TO THE 12TH LARGEST ECONOMY IN
THE WORLD MORE THAN SWEDEN OR AUSTRALIA OR SWITZERLAND.
THERE ARE DRAMATIC CHANGES AND PEOPLE ARE TRYING TO
UNDERSTAND HOW IT IS THAT THE CHANGES COULD BE HAVING AFFECTS
ON SOCIETY.
AND THERE ARE ARTICLES EVERYDAY IN KOREA ON HOW CHILDREN ARE
DAMAGED WHETHER THEY DON'T LIKE KINSHIE OR GOING TO
MCDONALDS OR THE MOTHER IS GOING TO WORK.
AT THE MAJOR MEDICAL CENTERS FOR A CHILD WHICH WE WOULD CALL
SYMPTOMS OF AUTISM IS FOR THE MOTHER TO STOP WORKING.
SO WE START ‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
EPIDEMIOLOGIC STUDY BECAUSE WE STARTED IT AND THEY SAID, NO, NO
NO, YOU'RE NOT GOING TO FIND ANYTHING HERE BUT GO AHEAD.
AND WE WENT AHEAD AND DID THIS.
MY COINVESTIGATORS IS SOMEONE AT YALE UNIVERSITY AND MCGILL
AND SOMEONE FROM THE UNIVERSITY OF ILLINOIS AND SOMEONE WHO
RUNS THE KOREAN INSTITUTE FOR SOCIAL DEVELOPMENT IN KOREA.
AND WE DECIDED WE CERTAINLY COULDN'T USE RECORDS BECAUSE
THERE WERE NO RECORDS OF AUTISM.
SO WE WERE GOING TO HAVE TO DO A POPULATION‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
SO WE SCREENED 35,000 KIDS AGES 6‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓‬
THAT'S ALL OF THE KIDS AND 70 ELEMENTARY SCHOOLS WITH WE ‫﷓ ﷓ ﷓‬
SORRY, 35 ELEMENTARY SCHOOLS.
AND WE SCREENED THEM USING ONE BEHAVIOR CHECKLIST CALLED THE
ABC FOR LOWER FUNCTIONING AND ANOTHER ASQ WHICH LOOKS FOR
MORE HIGHER FUNCTIONING AUTISM AND GAVE THE SCREENING TOOLS
BOTH TO PARENTS AND TEACHERS AND SCREENED POSITIVE KIDS
ADOXSS AND THE PARENTS ADI AND DID SRSs AND WISKS AND SO ON.
AND WE ENDED UP FINDING ENOUGH AUTISM THAT WILL BE, YOU KNOW,
PUBLISHING OUR RESULTS.
AND I CAN'T TELL YOU WHAT WE'RE FINDING ALTHOUGH IT'S CERTAINLY
NOT OUT OF LINE WITH WHAT HAS BEEN FOUND IN OTHER PARTS OF THE
WORLD.
AND I SHOULD JUST MENTION SINCE THIS IS NIH THAT WE DID THIS FOR
$120,000.
[CHUCKLING]
SORRY.
BUT I THINK ‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
FIRST TIME BECAUSE THEY SAID WE COULDN'T POSSIBLY DO IT FOR DISR
120,000 BUT THEY DIDN'T KNOW KOREAN RESEARCHERS AND WHAT
THEY'RE LIKE AND HOW THEY WOULD WORK FOR NOTHING.
[CHUCKLING]
ANYWAY, WE DID THIS.
AND IN A COUNTRY WHERE THERE WAS JUST TREMENDOUS RESISTANCE
TO AUTISM AS A FRAMEWORK FOR UNDERSTANDING CHILDHOOD
DEVELOPMENTAL DISORDERS.
AND ON NOVEMBER 13TH I GOT AN E‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓‬
THIS IS THE SCHOOL BOARD THAT TOLD US WE WOULD NEVER FIND
ANYTHING SAYING THAT THEY HAD JUST MET AND THAT THEY HAD
GONE OVER OUR PROGRAM EVALUATIONS.
I MEAN OUR PROGRESS REPORTS AND THEY HAD DECIDED ON THAT BASIS
THEY WOULD GIVE $220,000 FOR 5 YEARS TO DO MENTAL HEALTH
SCREENING FOR ALL 1ST GRADERS.
AND THIS IS A COUNTRY IN WHICH THERE IS NO PSYCHOLOGICAL
TESTING IN THE SCHOOLS AT ALL.
EVEN IN SPECIAL EDUCATION ENVIRONMENTS.
SO, THE PSYCHOANALYSTS THAT WE SAW, THERE IS FRANCE, THERE IS
KOREA, A LOT OF EXTERNALIZATION OF BLAME GOING ON.
AND WE SEE THAT AS WELL IN THE UNITED STATES.
WHERE THERE IS EXTERNALIZATION OF BLAME.
AND A LOT OF IT'S FUELED BY THE INTERNET AND BOTH AMI AND
REBECCA REFERRED TO IT A LITTLE BIT.
I THINK THE INTERNET PROVIDES A SENSE THAT EVERYBODY HAS
ACCESS TO THE SAME INFORMATION.
SO, THEREFORE, YOU KNOW THE DOCTOR DOESN'T NECESSARILY HAVE
ANYMORE EXPERTISE THAN I DO BECAUSE I CAN GO TO THE UNIVERSITY
OF GOOGLE.
[CHUCKLING]
SO THE DOCTORS HAVE ACCESS TO SCIENTIFIC ARTICLES BUT THE
PARENTS HAVE ACCESS TO ANECDOTES.
AND I THINK THAT THE VACCINE ISSUE IN PARTICULAR IN ADDITION TO
BEING ABOUT THE EXTERNALIZATION OF BLAME ALSO RAISES AN ISSUE
ABOUT A DISJUNCTION.
IT'S A DISJUNCTION BETWEEN I THINK WHAT WE CALL REAL AND
IDEALIZED SCIENCE.
SCIENTIFIC STUDIES AS OTHERS HAVE ALREADY NOTED HAVE NOT ‫﷓ ﷓ ﷓‬
HAVE SHOWN THAT NEITHER VACCINES NEITHER ANYTHING CONTAINED
IN VACCINES HAS BEEN RELATED TO AUTISM OR AUTISM PREVALENCE
AND THE BIOLOGISTS AND OTHERS THAT HAVE LOOKED AT THE
RELATIONSHIP OF MERCURY AND AUTISM AND DISORDERS CAN'T FIND A
WAY OF HOW IT WORKS.
YET LARGE NUMBERS OF ADVOCATES BY PATCHES THEY SEE ON THE
WEB REMAIN CONVINCED THAT IF ONLY SCIENTISTS WOULD DO THE
RIGHT KIND OF RESEARCH THEIR BELIEFS WOULD BE CONFIRMED.
THIS IS OF TOO MUCH TRUST IN SCIENCE.
WITH MORE KNOWLEDGE COMES MORE FEAR.
MORE INDETERMINACY AND RISK.
AND AS SCIENTISTS DO MORE RESEARCH, IT HAS MORE HYPOTHESES AND
RAISES QUESTIONS OF CLEAR CUT ANSWERS THAT WE KNOW ARE
EXTRAORDINARILY COMPLEX.
ONE NEED ONLY LOOK AT THE ADVOCACY RESPONSE FOR AN NIH TRIAL.
WHEN THEY DECIDED TO LOOK AT CHELATION AND YOU CAN LOOK AT
THAT.
AND MUCH OF THE PARENT COMMUNITY SAID, WELL, YOU SEE, IT MUST
BE TRUE THAT CHELATION WORKS OTHERWISE THE NIH WOULDN'T EVEN
LOOK AT IT INSTEAD OF THINKING THAT THE NIH IS TRYING TO BE
RESPONSIBLE.
THIS IS A PUBLIC HEALTH CONCERN PAID FOR BY TAXPAYER.
IT'S SOMETHING THAT THOUSANDS ARE DOING IN THE COUNTRY AND
OUR GOVERNMENT AUGHT TO BE TAKING A LOOK AT IT.
IT'S THIS MUST BE PLAUSIBLE BECAUSE OTHERWISE THEY WOULDN'T PUT
ANY MONEY TOWARD IT.
I'M NOT SURE WHY PEOPLE ARE RESISTANT TO THE IDEA THAT AUTISM
RATES HAVE BEEN SUBJECT TO CHANGES THAT ARE SOCIAL AND
CULTURAL AND DUE TO THE EPIDEMIOLOGIC CHANGES AND
CLASSIFICATIONS AND SO ON.
BUT THEIR DESIRE IS CERTAINLY UNDERSTANDABLE AND I SYMPATHIZE
WITH THEIR OPINIONS EVEN THOUGH I THINK THEY'RE WRONG.
THE WAY THAT WE DEALT WITH OUR SITUATION WAS TO FIRST OF ALL
RELY ON THE SCIENTIFIC LITERATURE.
AND THEN MY WIFE AND I DECIDED, YOU KNOW, WE CAN LOOK AT THE
SCIENCE ALL WE WANT BUT WE HAVE TO ACT.
WE HAVE TO DO SOMETHING.
AND ONE OF THE THINGS THAT CHANGED OUR TREATMENT OF ISABELLE
WAS WHEN DR. LANDA RECOMMENDED A TEST CALLED THE LIGHTER.
AND SHE HAD THE WORD UP THERE, I THINK.
THE LIGHTER TEST.
IT'S AN OLD, OLD TEST.
I THINK IT WAS WRITTEN IN 1927.
AND IT SHOWED THAT ISABELLE HAD EXTRAORDINARY VISUAL AND
SPATIAL SKILLS.
SO WE DECIDED THAT WE WOULD TRY TO FIND A PRESCHOOL WHERE
LANGUAGE DIDN'T MATTER AS MUCH.
WHERE SHE COULD BE EXPOSED TO MORE HANDS‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓‬
AND THIS WAS AT REBECCA LANDA'S AND OTHERS' ADVICE.
AND WE FOUND A SMITHSONIAN.
AND I HAD A PAYCHECK AND THAT WAS A BEAUTIFUL TIME IN OUR
LIVES.
GOING THERE WAS AMAZING AND ISABELLE GOT COMPLETELY
STIMULATED BY THE PLANT LIFE AND THE FLOWERS AND EVERYTHING
AROUND.
THERE WAS ALL OF THESE INCREDIBLE TREES AND THERE WAS ONE
AMAZING TREE THAT SHE COULDN'T GET ENOUGH OF AND SHE WOULD
STAND THERE AND WATCH THIS TREE AS IF SHE COULD SEE IT GROWING.
IT'S CALLED THE WALKING STICK.
IT DOESN'T GROW THE WAY A TREE IS SUPPOSED TO GET ‫﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND CHILDREN WOULD GO TO ONE OF THE MUSEUMS.
IF THEY WERE SUPPOSED TO LEARN ABOUT SHAPES THEY WOULD GO AND
LEARN ABOUT SHAPES AND ART.
IF THEY WERE SUPPOSED TO LEARN ABOUT INSECTS THEY WENT THERE.
AND LEARN ABOUT EMOTIONS WENT TO THE NATIONAL PORTRAIT
GALLERY WHICH IS REALLY HARD FOR ISABELLE BECAUSE SHE DIDN'T
LIKE PROMOTIONS AND FACES.
SMITHSONIAN WAS AN IDEAL PLACE.
AND WITH THIS SETTING SHE HAD EXPOSURES TO UNIMPAIRED PEERS
AND HAD A STIMULATING VEERMENT ‫﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
PLACE WHERE HER SKILLS WERE APPRECIATED.
WE HAVE HAD BUMPS IN THE ROAD AND DIFFICULTIES AND DIFFICULTIES
HAVING HER CLASSIFIED UNDER THE CODE OF AUTISM IN THE PUBLIC
SCHOOLS BECAUSE THEY WEREN'T FAMILIAR WITH IT IN 1996 WHEN SHE
FIRST ENTERED THE SCHOOL SYSTEM.
IT WAS ONLY A COUPLE OF YEARS OLD, THIS CLASSIFICATION.
AND THEY WERE STILL USING MULTIPLE DISABILITIES AND SHE
COULDN'T STAY IN THE SCHOOL IF SHE WAS AUTISTIC.
WE HAD TO CODE HER WITH MULTIPLE DISABILITIES.
AND WE HIRED LAWYERS AND DID EVERYTHING THAT PARENTS HAVE TO
DO.
BEING A PARENT OF ANY CHILD WITH A DISABILITY IS A CONSTANT
FIGHT.
BUT TODAY SHE'S IN THE 10TH GRADE AND PLAYS CELLO IN THE SCHOOL
ORCHESTRA AND LOVES ZOOS AND WANTS TO BE A ZOO KEEPER.
AND REMARKABLY TO EVERYBODY'S SURPRISE SHE PASSED THE
MARYLAND ASA IN ALGEBRA RECENTLY.
WHAT I WANT TO DO NOW IS READ A SECTION OF THE BOOK THAT I
WROTE ABOUT AUTISM CALLED UNSTRANGE MINDS AND IT GIVES YOU A
SENSE OF HOW MY WIFE AND I DEALT WITH OUR DAUGHTER AND HOW
WE ADAPTED TO HER.
NOT JUST HOW SHE HAD TO ADAPT TO US.
ONE OF THE THINGS THAT WE FOUND NECESSARY WAS TO FOLLOW OUR
DAUGHTER'S LEAD AND NOT ALWAYS PUSH HER TO DO THINGS.
AND ONE LEAD WE FOLLOWED WAS TO FRANCE, IRONICALLY GIVEN
WHAT I JUST SAID ABOUT FRANCE.
SHE WANTED TO GO TO FRANCE.
I WILL READ THIS AND IT WILL FINISH OFF THE SESSION.
A LITTLE BIT AFTER 12.
OKAY.
IN THE WINTER OF 1999 TO 2000, ISABELLE SEARCHED OUR LOCAL
BOOKSTORE FOR A BOOK SHE HAD FIRST SEEN CALLED LINEIA IN
MONET'S GARDEN.
IT TELLS A STORY OF A SWEDISH GIRL WHO TRAVELS WITH A NEIGHBOR
TO PARIS.
AND GOES TO A GARDENNEN THERE.
ISABELLE WANTED US TO READ THE STORY TO HER OVER AND OVER AND
SHE LEARNED IT VERY QUICKLY AND THEN WE EVEN GOT A VIDEO OF IT.
SO SHE WAS OBSESSED WITH THIS STORY.
ABSTRACTIONS ARE NEVER GOOD ENOUGH FOR ISABELLE.
IF SHE BECOMES INTERESTED IN A RARE ANIMAL SHE WANTS TO GO TO
THE ZOO TO SEE THE ACTUAL SPECIMEN.
SHE FELT THE SAME ABOUT LINEA AND MONET NOT MATTERING THAT
MONET WAS DEAD AND LINEA WAS A FICTIONAL CHARACTER.
SHE WANTED TO LOOK LIKE LINA.
AND MY WIFE FOUND CLOTHS THAT LOOKED LIKE LINEAs.
AND ISABELLE BECAME LINEA AS OFTEN AS WE WOULD LET HER.
WE HAVE A SHINY CIRCULAR TABLE IN OUR LIVING ROOM SAYING
JAPANESE BRIDGE.
AND SHE WOULD LOOK UP AND DOWN AND SAY NOTHING.
I WANTED TO BELIEVE THAT HER MIND WAS FILLED WITH THE IMAGES
AND WONDERED IF SHE LOOKED INTO IT SHE WOULD LOOK AT THE
BLOSSOMS THAT FORMED A CAP PI OVER THE BRIDGE ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
I ASKED HER TO TURN AROUND AND TELL ME WHAT SHE SAW, SHE
LOOKED UP AND DOWN AND FOCUSED ON THE SHINY SURFACE.
SHE SPENT A LONG TIME WITH HER EYED FIXED AT AN UNUSUAL ANGLE
LOOKING AT THE TABLE.
AND SHE STOPPED BECAUSE SHE SAW SOME THINGS REFLECTED.
I CAN'T REMEMBER HOW LONG SHE SPENT LOOKING AT THE COFFEE
TABLE BUT IT SEEMS LONG TO ME AND SHE WAS
UNCHARACTERRISTICALLY CALM.
I COULDN'T SEE THAT SENSE OF CALM SINCE WE TOOK HER THERE IN 2000.
OUR MAIN STRATEGY FOR HELPING ISABELLE IS TO PREVENT HER FOR
BEING TOO FOCUSED ON A SINGLE BEHAVIOR.
THIS IS TOPIC ELABORATION WHEN YOU WANT TO KEEP MOVING WITH
SOMETHING.
ISABELLE MADE SURE OUR ENTRY WENT TO BOOK.
BUYING A BAGUETTE AND CHECKING WITH THE TICKET BOOTH AND
THEY WOULD TELL HER TO TAKE PICTURES IN MONET'S HOUSE IS QUOTE,
UNQUOTE, STRICTLY PROHIBITED.
WE SPENT HOURS LOOKING AT THE WATER LILIES AND SHE RUSHED TO
THE BRIDGE AT THE APEX.
LIKE MONET WHO MUST HAVE WATCHED THE POND FOR HOURS WAIT
FOR JUST THE RIGHT IMPRESSION TO MOVE HIM.
SHE WAS MESMERIZED BUT BY WHAT WE WOULD NEVER KNOW.
SHE WAS CALM BUT DETERMINED.
SHE SAT ON THE SAME STEPS LINEA DID AND PICKED UP HER RIGHT FOOT
AND STRETCHED HER ARMS UP LIKE LINA DID.
AND SHE WAS GETTING HER OWN IMPRESSIONS BUT I THINK THEY WERE
IMPRESSIONS OF COMPLETENESS.
FIRST THE BOOK AND THEN THE VIDEO AND NOW REALITY.
SHE HAD BEEN ABLE TO STEP INSIDE ALL THREE.
WHEN WE CAME BACK, SHE STARTED TAKING EARLY MORNING FRENCH
CLASSES AT OUR LOCAL ELEMENTARY SCHOOL AND SHE SURPRISED
EVERYONE.
ALTHOUGH I HAD TO SIT NEXT TO HER THE ENTIRE TIME TO KEEP HER ON
TASK, SHE OBSERVED THE VOCABULARY AND BECAME ONE OF THE TOP
STUDENTS IN THE CLASS WINNING A COMPETITION IN WHICH THE
TEACHER SHOWED THE FLASH CARDS WITH THE WORD IN FRENCH TO
ADVANCE TO THE NEXT ROUND.
IT WAS LIKE SPEECH THERAPY.
BECAUSE THE CHILDREN WERE LOOKING AT CONVERSATION IN PRETEND
SETTINGS.
FEW EXPERTS WOULD SAY THAT AN INDIVIDUAL WITH AUTISM NOT DO
THAT.
THE PERSON AT THE GROCERY STORE OR THE MAN WALKING THE DOG ON
THE STREET, SHE DIDN'T UNDERSTAND HER BUT SHE WAS INTERACTING
WITH THE WORLD.
ONE OF THE THINGS THAT HAPPENED IN PARIS WAS THAT ISABELLE
OVERCAME HER FEAR OF DOGS AND SHE DECIDED THAT SHE WANTED A
FRENCH BULLDOG AND TODAY SHE DOES HAVE HER OWN AND IT'S
REGISTERED UNDER THE KENNEL CLUB AS LINEA IN THE GARDEN.
I WILL SAY A LITTLE BIT MORE BECAUSE THERE IS 4 OR 5 MORE MINUTES
TO WRAP UP.
THERE IS A WAVE OF AUTISM AWARENESS IN THE WORLD.
AND THE IMAGE OF AUTISM HAS CHANGED AND THE WORLD IS BETTER
FOR IT.
THERE ARE SO MANY FRIGHTENED PARENTS OUT THERE BUT I'VE SEEN
THE CHANGE FOR ISABELLE AND OTHER KIDS THROUGHOUT THE WORLD.
BUT EVEN MORE IMPORTANT THAN THERE BEING A WAVE OF AUTISM
AWARENESS, THERE IS A WAVE OF AUTISM UNDERSTANDING.
WHEN ISABELLE ENTERED THE SCHOOL SYSTEM SHE WAS SEEN AS
STRANGE.
NOBODY KNEW WHAT TO DO WITH HER.
AND CHILDREN FELT THAT WAY TOO.
BUT TODAY THE CHILDREN IN 9TH AND 10TH GRADE, THEY KNOW WHAT
AUTISM IS.
IF YOU TAKE A CHILD AND INTRODUCE THEM AND THEY'RE STRANGE
AND BIZARRE, THEY'RE NOT GOING TO BE GOOD WITH THEM.
IF YOU SAY YOU PROBABLY HEARD ABOUT IT BEFORE OR THIS PERSON
HAS IT ON THIS SHOW, THE MORE PEOPLE WITH AUTISM, THE MORE
PEOPLE EMBRACE CHILDREN WITH AUTISM.
I HAVE HEARD PARENTS IN NEW DELI NOT TALKING ABOUT HOW
IMPAIRED THEIR CHILDREN ARE WITH AUTISM BUT HOW THEY'RE LIKE
THE SAINTS AND GODS.
AND I TALKED TO NAFFA HO INDIANS THAT SAID THAT IT'S LIKE
PERPETUAL CHILDREN.
THAT'S NOT A BAD THING.
THERE ARE ULTRA ORTHODOXES THAT NOT ONLY BELIEVE THAT
AUTISTIC CHILDREN THAT ARE NONVERBAL CAN ONLY CHANNEL THE
WORDS OF GOD BUT THEY ARE SUPPORTING THE VARIOUS CANDIDACIES
OF BENJAMIN YAHOO!.
BUT IT'S A SIGN OF A MORE POSITIVE WAY OF VIEWING AUTISM.
SO I THINK THESE NEW UNDERSTANDINGS OF AUTISM HAVE TAUGHT
PEOPLE TO SEE STRENGTH AND HOPE RATHER THAN JUST DEVASTATION
AND DESPAIR.
AND ISABELLE TAUGHT ME THAT THERE IS A BEAUTY.
THE BUDDHISTS SAY THERE IS BEAUTY IN A LO TUS FLOWER EVEN
THOUGH IT COMES FROM THE MUD.
AND SHE HAS SHOWN THAT AUTISM CAN CONTAIN SOMETHING THAT IS
BEAUTIFUL INSIDE A SINGLE PERSON.
NOT SO MUCH SOMETHING TO BE NORMAL AND RECOVERED AND
NORMAL TO BE FOUND AND EXTRACTED BUT SOMETHING OF ITS OWN
BRILLIANCE AND WITH ITS OWN TRUTH.
SO WHEN PEOPLE PITY ME WITH HAVING A CHILD WITH AUTISM, I JUST
DON'T UNDERSTAND THE SENTIMENT.
AND I DON'T COMPARE ISABELLE TO SOME IMAGINED NORM OF WHAT
ANOTHER 16 YEAR‫﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
I COMPARE HER TO WHERE SHE HAS COME FROM AND I SEE SO MUCH
TREMENDOUS IMPROVEMENT.
FAR MORE THAN ANYBODY EVER EXPECTED.
AND I WORK HARD FOR ISABELLE BUT DON'T REGRET IT OR FEEL SORRY
FOR MYSELF.
AT THE END OF THE DAY WHEN I TUCK HER IN, SHE'S NOT A CASE OF
AUTISM, BUT RATHER JUST MY DAUGHTER. AND OUR JOB AS PARENTS IS
TO WORK HARD FOR WHATEVER GROWTH IS TO COME.
EVEN IF THE GROWTH IS TWISTED LIKE THE GROWTH OF THE TREES IN
FRONT OF THE SMITHSONIAN.
SO THANK YOU VERY MUCH!
[APPLAUSE]

>>: THANK YOU.
WE'RE GONNA HAVE A PANEL DISCUSSION WHERE YOU WILL HAVE AN
OPPORTUNITY TO ASK QUESTIONS.
AND OUR SPEAKERS ARE COMING UP TO THE TABLE.
WHILE THEY'RE COMING UP AND SITTING DOWN, I REMEMBERED LAST
SUMMER WHEN WE WERE WRITING THE ABSTRACT FOR THIS SEMINAR WE
WERE STRUGGLING WITH A DEFINITION FOR INCIDENCE DEFERENCES
PREVALENCE AND A COLLEAGUE SENT ME A COMIC STRIP ABOUT RAIN
DROPS AND PUDDLES AND SADLY I CAN'T REMEMBER WHICH IS WHICH
BUT IT WAS HELPFUL FOR ME TO DEFINE THE DIFFERENCE BETWEEN THE
TWO.
I DON'T KNOW IF THAT WAS HELPFUL FOR YOU TO DEFINE IT SUCCINCTLY
FOR OUR AUDIENCE BUT THANK YOU.
IF YOU HAVE A QUESTION YOU CAN JUST LEAN FORWARD IN LIGHT OF
THE MICROPHONES.
JEFF?
>>: I HAVE A COMMENT: MY 8 YEAR‫﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
ARE GOING AT THE NIH.
AND I TOLD HIM THAT WE WERE DOING A SEMINAR ON CHILDREN WHO
DON'T COMMUNICATE WELL WITH OTHER CHILDREN.
AND HE SAYS, OH, AUTISTIC KIDS!
WE HAVE TWO AUTISTIC KIDS IN OUR SCHOOL!
AND THEY, YOU KNOW, HAVE SPECIAL GUIDES THAT TAKE THEM
AROUND AND HE SAID, BUT THEY DON'T DO MUCH WORK BUT THEY'RE
THERE.
[CHUCKLING]
>>: WELL, THEY'RE DOING A LOT OF WORK.
JUST TO BE IN THAT SCHOOL JUST TO TELL YOU AS A PARENT: TELL YOUR
SON THAT THEY HAVE TO WORK JUST HARD TO BE IN THE SCHOOL, TO GO
TO THE CAFETERIA, TO BE AROUND THE NOISES AND THE SENSATIONS
AND THE CHAOS AND SO ON OF WHAT A SCHOOL IS LIKE.
>>: THANK YOU.
>>: I WOULD LIKE TO JUST MAKE A COMMENT: I THINK THAT IT'S A
WONDERFUL EXERCISE TO THINK ABOUT HOW TO TALK ABOUT AUTISM
TO CHILDREN.
AND NOW‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
THAT ARE REALLY QUITE INSIGHTFUL.
MY OWN PERSONAL STORY IS THAT MY CHILDREN NEVER KNEW WHAT I
DID IN LIFE UNTIL I APPEARED IN NICK NEWS ON A WONDERFUL
PROGRAM THAT THEY HAD ON AUTISM.
AND INTERESTINGLY, THEY WERE ABLE TO CONVEY NOT ONLY IN A VERY
ABSTRACT FASHION WHAT AUTISM IS, BUT THEY HAD CHILDREN WHO
WERE HIGHER FUNCTIONS.
SO, THOSE ARE INDIVIDUALS WHO HAVE THOSE KINDS OF SPECIAL
INTEREST AND COULD BE VERY ENDEARING BECAUSE THEY WOULD
FOLLOW THROUGH THE INTEREST TO THE END OF THE EARTH BUT ALSO
HAVE VERY VERY VERY CHALLENGED CHILDREN WHO ARE LOWER
FUNCTIONING WITH A LOT OF UNUSUAL BEHAVIORS AND I THINK WE
HAVE BEEN TOO PATERNALLISTIC TO OUR CHILDREN IN THE THOUGHT
THEY MAY NOT BE ABLE TO UNDERSTAND THE HARD CONCEPTS AND
REALITIES.
AND THROUGH SOME OF THIS WORK WE REALIZE WE'RE WRONG.
AND SOME OF THIS WORK INCLUDING NICK NEWS HAS BEEN PROFOUND
IN DISSEMINATING THE IDEAS THAT IT SEEMS YOUR CHILD HAS
OBSERVED ENTIRELY.
>>: I'M SURE I DIDN'T KNOW THE WORD AUTISM WHEN I WAS 8.
>>: YES, SIR, IN THE BLUE.
>>: I HAVE A ‫﷓ ﷓ ﷓‬
IF YOU LOOK AT.
>>: OKAY.
I HAVE A QUESTION AND THAT IS: WHAT IS GOING TO HAPPEN TO THESE
KIDS WHEN THEY'RE ADULTS?
LIKE WHAT ARE THE POSSIBILITIES FOR THEM ESPECIALLY GIVEN THAT
SO MUCH OF HIGHING NOW DEPENDS ON PEOPLE, YOU KNOW, BEING
GOOD AT TEAMWORK AND INTERACTING WITH OTHER PEOPLE.
HOW CAN YOU, YOU KNOW, HELP YOUR CHILD FIND A PLACE IF THEY
SUFFER FROM, YOU KNOW, AN AUTISM SPECTRUM DISORDER WHETHER
THEY'RE HIGH FUNCTIONING OR WHETHER THEY'RE LOWER
FUNCTIONING.
WHAT'S BEING DONE IN TERMS OF WHAT'S GOING TO HAPPEN TO THE
KIDS, SAY, WHEN THEY'RE 20, 21, 22 AND THEY BECOME ADULTS?
I WOULD LIKE IT IF ANYBODY COULD ADDRESS THAT.
>>: I CAN RESPOND TO THAT.
I HAVE A FRIEND THAT GRADUATED FROM VASSER WITH ME, GOT A LAW
DEGREE, AND WORKED FOR THE FEDERAL GOVERNMENT FOR A VERY
LONG TIME.
AND IS DEFINITELY HIGH FUNCTIONING AND I BETCHA THAT THERE ARE
A NUMBER OF SCIENTISTS AT NIH WHO FALL SOMEWHERE ON THE
AUTISM SPECTRUM.
[LAUGHTER]
AND I THINK WHAT WE ALL HAVE TO DO IN OUR ADULT LIVES IS FIND
OUR NICHE AND HOW WE CAN COMPENSATE.
I HAVE A MATH BRAIN, AND, GEE, I WISH I HAD GREAT WRITING SKILLS
BUT I DON'T.
AND I HAD TO LEARN TO COMPENSATE IN REAL LIFE BECAUSE MY JOB IS
CONGRESSIONAL LIAISON MEANS I HAVE TO DO A LOT MORE WRITING.
ALONG THE WAY YOU FIND WHERE YOU CAN FIT IN.
>>: I WOULD LIKE TO FOLLOW UP AND MAKE A COMMENT THAT THE
QUESTION OF WHAT WILL HAPPEN TO THE CHILD NOW WITH AUTISM AND
IN THE FUTURE ALMOST MAKES THE ASSUMPTION THAT THERE AREN'T
KIDS WHO ALREADY BECAME ADULTS 20, 30, 40 YEARS AGO.
MY HUNCH IS THE PREVALENCE RATE OF AUTISM IS 1 IN 150 AND
PROBABLY SIMILAR AMONG ADULTS TODAY.
NOW IT'S NOT EASY TO SEE ADULTS.
MOST DEAL WITH KIDS BECAUSE THEY'RE IN SCHOOL AND CAN BE
COUNTED.
ONCE IN THE COMMUNITY IT'S HARD TO COUNT THEM LIKE ADULTS WITH
SPEECH AND LANGUAGE DISORDERS YOU CAN'T DO IT.
AND I HAVE A BRIEF NOTE OF A STORY.
I WAS AT MINNESOTA PUBLIC RADIO GIVING A TALK AT A FORUM AND A
MAN STOOD UP AND SAID I DON'T KNOW ANY ADULTS WITH AUTISM BUT
ALL OF THESE KIDS.
AND FIVE ADULTS IN AN AUDIENCE OF 100 SAID THEY WERE ADULTS
WITH AUTISM AND NICE TO MEET YOU.
IT WAS MADE POSSIBLE THAT THE RADIO IN MINNESOTA INVITED
AUTISTIC ADULTS TO THAT EVENT.
>>: I HAVE SOMETHING ABOUT THAT.
I SEE A 46 YEAR‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓‬
YES.
ADULTS WITH AUTISM, THERE IS THE ISSUE OF RECOGNITION, THERE IS
THE FACT THAT THOSE INDIVIDUALS HAVE BEEN LOST AND MANY ARE
PART OF FAMILIES AND NOT THE COLLECTIVE CONSCIOUSNESS OF
COMMUNITIES AND NOW WE'RE SEEING A TRANSITION IN THAT REGARD.
I REMEMBER VISITING IN FRANCE A PLACE WHERE IN THE MONASTERY
WHERE THEY HAD INDIVIDUALS WITH AUTISM WHO ARE REACHING
THEIR 60'S AND 70'S AND I THINK IT'S JUST A QUESTION I THINK AS WE
HEARD SO BEAUTIFULLY TODAY, IT'S A QUESTION OF CHANGING OUR
MINDS AND CONCEPTS BECAUSE WE TEND TO FORGET THAT THE VERY
TOOLS WE USE TO UNDERSTAND THE WORLD ARE CREATED IN SOCIETY
IN SOME WAY OR ANOTHER.
THERE ARE CONCRETE THINGS.
AND ONE OF THEM IS LEGAL RIGHTS.
IT IS STILL THE CASE IN SOME STATES OF THE UNION, AUTISM IS NOT
RECOGNIZED AS A DISABILITY.
SO IF YOU DO NOT HAVE MENTAL RETARDATION WHICH COMES UNDER
ANOTHER DEPARTMENT THEN YOU DON'T HAVE ANY SERVICES AT ALL.
SO, IT'S CRITICAL FOR US TO REMEMBER THAT SOME PLACES INCLUDING
CONNECTICUT, PARENTS ARE STILL ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
IN WHICH THE CHILDREN ARE PROVIDED WITH SERVICES AND THAT'S THE
SCHOOL YEARS THAT GOES TO 18 OR 21 AND IT IS PART OF THE
COMMUNITY INSTEAD OF (INAUDIBLE) TO CHILDREN WITH SERVICES.
AND ONCE 21 IT'S BACK TO THE PRIVATE REALITY.
AND THE INDIVIDUALS APPEAR NOT NECESSARILY BECAUSE THEY
VANISH IN THIN AIR BUT THEY'RE LIVING WITH MOM AND DAD AND MOM
AND DAD IS AGING AND WHAT'S GOING TO HAPPEN TO THOSE
INDIVIDUALS?
SOMETHING THAT GOES BACK TO SORT OF YOUR INITIAL COMMENT: WE
ALL NEED TO FIND A NICHE FOR WHAT WE DO.
WE TRY TO AVOID OUR WEAKNESSES AND TRY TO BUILD OUR
STRENGTHS.
THERE IS A REASON I'M NOT WORKING AT WALL STREET AND BECOMING
A MILLIONAIRE.
I WOULDN'T BE ABLE TO DO THAT.
BUT I FOUND MY NICHE.
AUTISM, THE PROBLEM IS SOME OF THE DISABILITIES ARE VERY SORT OF
THE STAPLE OF HUMAN INTERACTION.
SO IN ORDER FOR ME TO GET A JOB I NEED TO GO TO AN INTERVIEW.
IF I DON'T CARE ABOUT THE GROOMING ISSUES AND DON'T HAVE THE
COMMUNICATION ISSUES I'M NOT GOING TO HAVE A SECOND CHANCE
AND DEVELOP MEANINGFUL RELATIONSHIPS AND EVERYBODY WANTS
TO TALK ABOUT DEEP MARINE BIOLOGY.
SO, THE ISSUES, THE DEFICITS ARE MORE CRITICAL FOR SURVIVAL.
HAVING SAID THAT, ONCE WE GAIN THAT KIND OF INSIGHT WE CAN
WALK BACK AND ENSURE THAT THOSE THINGS THAT ARE GOING TO
HAVE IMPORTANCE LONG‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
NOT NECESSARILY WHEN CHILDREN ARE TRANSITIONING INTO
ADULTHOOD BUT UNTIL THE TIME WE BEGIN TO TALK WITH THEM.
AND HAVING A SENSE THAT REALIZED SKILLS MATTER IS A WAY OF
INNOCULATING OURSELVES ABOUT HAVING INDIVIDUALS WITH GREAT
DEGREES OF TALENTS BUT LIVING WITH MOM AND DAD.
>>: THANK YOU.
I WANT TO BROADEN THAT QUESTION OUT AND ASK OUR PANEL TO
RESPOND TO THE LARGER QUESTION BECAUSE THE ISSUE OF TRANSITION
AND SERVICES FOR ADULTS IS ONE THAT IS OF PEEK INTEREST TO THE
INTERAGENCY AUTISM COORDINATING COMMITTEE AS WE PLAN THEIR
STRATEGY FOR RESEARCH OVER THE NEXT DECADE AND WHAT DO YOU
FEEL WITHIN YOUR AREA IS THE MOST IMPORTANT RESEARCH
QUESTIONS TO BE ASKED RIGHT NOW.
BECKY, CAN WE START WITH YOU THIS TIME?
>>: IN TERMS OF INTERVENTION FOR ADULTS?
>>: NO, ACROSS THE WHOLE SPECK RUM.
WHAT QUESTIONS ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
ARE VERY IMPORTANT QUESTIONS TO GET TO WHAT DR. GRINKER SPOKE
UP IN TERMS OF RATES AND PERCEPTION.
WHAT DO YOU THINK ARE THE THREE MOST BURNING QUESTIONS IN
AUTISM?
>>: WELL, YOU KNOW, MY WORK WITH THE EARLY DETECTION AND
EARLY INTERVENTION STUDIES HAS JUST COMPLETELY TRANSFORMED
MY UNDERSTANDING OF AUTISM SO I THINK THAT AS RICHARD
EXPLAINED, THE POSSIBILITIES FOR PEOPLE WITH AUTISM ARE REALLY
TRULY FAR BEYOND OUR IMAGINATION.
AND IN SOME WAYS WE HAVE ALLOWED OURSELVES TO DEFINE THE
LIMITS FOR INDIVIDUALS WITH AUTISM WITH A FALSE SENSE OF
SECURITY.
SO, I'M VERY INTERESTED IN PREVENTION RESEARCH.
SO HOW EARLY CAN WE START?
WHAT CAN WE REALLY PREVENT?
WHAT ARE THE CASCADING THINGS AS AMI ELUDED TO THAT WE CAN
ACTUALLY INTERFERE WITH HAPPENING?
NOT JUST IN TERMS OF LEARNING AND BEHAVIOR BUT ALSO
NEUROBIOLOGICALLY.
>>: TODAY WE DID NOT HAVE A PRESENTATION OF SCIENCE.
THIS WAS NOT SORT OF THE GOAL.
BUT SCIENCE IS AT THE BOTTOM OF WHAT ALL OF US DO.
TO MY MIND, AUTISM IS AN OPPORTUNITY FOR US TO LOOK FROM THE
PERSPECTIVES OF MANY METHODS, MANY DISCIPLINES.
THE KEY CONCEPT OF SOCIALIZATION.
WE DON'T KNOW ENOUGH.
WE DON'T KNOW ENOUGH ABOUT IT FROM A BRAIN STANDPOINT BUT IF I
MAY SAY, THOSE MECHANISMS, THEY ARE ROOTED IN GENES, THEY ARE
ROOTED IN EPIGENETIC FACTORS, THEY'RE ROOTED IN BRAIN
STRUCTURES.
BUT MOST OF ALL, THEY ARE ROOTED IN THE DEVELOPMENT OF THIS
SOCIALIZATION ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND ONE THING THAT I BELIEVE IS A GREAT OBSTACLE.
NOT ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
BUT IN TERMS OF CULTURE AND AN THROWPOLOGY, INTERESTINGLY
ENOUGH, SOME OF OUR MODELS IN SCIENCE HAVE BEEN TOO LINEAR,
THEY HAVE BEEN TOO SEQUENTIAL AND TOO LOCALIZED.
AND I BELIEVE IF WE WANT TO UNDERSTAND SOCIAL MECHANISMS WE
WILL HAVE TO CONQUER SOME OF THOSE IN A WAY SCIENTIFIC
CONCEPTUAL LIMITATIONS.
AND WE HAVE SEEN IN THE PAST 10 YEARS THE EVOLUTION OF SOME OF
THOSE, OF THOSE CONCEPTS.
BUT THERE IS STILL A TREMENDOUS AMOUNT OF IN A WAY RESISTANCE.
IT'S NOT SOMETHING THAT A GENE IS GOING TO RESOLVE.
IT'S NOT SOMETHING THAT A SPECIFIC NEUROLOGICAL MECHANISM IS
GOING TO SHED LIGHT.
IT'S GOING TO TAKE A BIT OF COHESION AND PROBABLY
TRANSFORMATION OF THE WAY WE LOOK AT SCIENCE.
>>: WELL ONE OF THE THINGS THAT I DO THINK THAT WE SHOULD
SUPPORT IS MORE INTERNATIONAL EPIDEMIOLOGIC WORK.
PARTICULARLY IN DEVELOPING COUNTRIES WHERE ONE MIGHT
ACTUALLY FIND MORE GENETICALLY HOMOGENEOUS WORK,
EPIDEMIOLOGY.
IT SEEMS TO ME THAT WE DON'T KNOW ENOUGH ABOUT ALSO
INTERNATIONALLY HOW OUTCOMES MAY VARY.
THE 1970'S, THE W.H.O. STUDIES SHOWED THAT THERE WAS BETTER
PROGNOSIS AND SEVERITY OF PSYCHOTIC EPISODES OF PEOPLE IN OTHER
COUNTRIES AND WORSE IN DENMARK AND BETTER IN INDIA AND RURAL
NIGERIA.
WE DON'T KNOW WHY THAT IS.
SOCIAL STRESSORS SO I'M INTERESTED IN PREVENT AND TREATMENT.
>>: BACK TO THE MAN HERE.
>>: I'M CURIOUS ABOUT RESEARCH ON PARENT ATTITUDES AT SORT OF
THE NATIONAL NEWS OUTLETS.
WE OFTEN HEAR THAT PARENTS BELIEVE THERE IS AN EPIDEMIC TO THE
VACCINE AND SO FORTH.
WHEN I READ THINGS I'M STARTLED TO WHAT THEY SAY.
IS THERE RESEARCH ON WHAT THE PARENTS BELIEVE ON THESE ISSUES?
>>: TO ANSWER THAT QUESTION: THERE ARE SURVEYS SHOWING WHAT
PARENTS THINK ABOUT IT.
IT DEPENDS WHETHER OR NOT THEY HAVE A CHILD WHO HAS AN AUTISM
SPECTRUM DISORDER.
SPEAKING WITH LEE GROSSMAN FROM THE AUTISM SOCIETY OF
AMERICAN AND OTHER PARENTS, PARENTS' EXPERIENCES ARE QUITE
DIFFERENT ON WHAT THEIR CHILD'S ABILITIES AND DISABILITIES ARE.
AND PROBABLY THE MOST IMPORTANT THING IS THAT WE ARE LOOKING
AT A SMALL FRACTION OF THE CHILDREN ON THE SPECTRUM WHEN WE
LOOK AT THE NEWS.
IF YOU READ ALL OF JENNY MCCARTNY'S BOOK ABOUT HER SON ONE
MIGHT LOOK AT THE NONVERBAL DISTURBED STATE TO TREATMENT OF
HIS SEIZURE DISORDER.
SHE DID NOT INTERPRET IT THAT WAY.
WHEN WE LISTEN TO THE NEWS IT'S HELPFUL TO LISTEN WITH THAT
QUESTIONING EAR OF SORT OF WHAT IS IT?
I LOVE THE FEDEX EXAMPLE BECAUSE DR. GRINKER IS RIGHT, WE WILL
NEVER LOOK AT THOSE TRUCKS AGAIN THE SAME WAY.
THE PARENTS GO THROUGH DIFFERENT STAGES.
AS I WAS LISTENING TO THE TALKS THIS MORNING IT OCCURRED TO ME
JUST AS WE CHANGED FROM DIAGNOSIS OF MENTAL RETARDATION TO
DEVELOPMENTAL DISABILITIES OR DELAYS WITH THE DELAYS IMPLYING
WE'RE GOING TO HAVE THE KIDS CATCHING UP TO AUTISM AND MR AND
THAT CHANGED IN 1948.
THAT CHANGE IS HUGE AND IMPACTS ON THE WAY NOT THAT WE'RE
CLASSIFYING CHILDREN BUT OFFERING TREATMENT.
AND IT'S AMAZING IN CONNECTICUT YOU DON'T GET TREATMENT FOR
AUTISM BECAUSE IN OTHER STATES IT GETS YOU A VERY DIFFERENT
LEVEL OF SERVICES.
>>: NO. 1: THANK YOU FOR A FANTASTIC PRESENTATION.
IT WAS REALLY EXCELLENT THIS MORNING.
THE QUESTION ‫﷓ ﷓﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓﷓﷓ ﷓ ﷓‬
ONE RESEARCH I NEVER SEEN WHICH IS EXTREMELY INTERESTING IS THE
AUTISTIC CHILDREN SEEM TO FOCUS ON THE MOUTH RATHER THAN THE
EYES OF THE PEOPLE THEY INTERACT WITH.
NO. 1, I DON'T KNOW IF THIS HAS BEEN STUDIED LATER THAN AT THE
REAL INFANT STAGE.
YOU WENT UP TO AGE 2 BUT I DON'T KNOW IF IT HAS BEEN STUDDED
OLDER KIDS, FOR EXAMPLE ‫﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND NO. 2: COULD SOMETHING IN INTERVENTION COME OUT OF THIS?
COULD THERE BE A WAY TO HELP COMMUNICATION OF AUTISTIC
CHILDREN BY USING INSTEAD OF USING OTHER MEANS, USING THE FACT
THAT THEY WATCH THE MOUTH AND MAYBE OTHER WAYS OF
COMMUNICATION LIKE USING SIGN LANGUAGE WHICH HAS NOT BEEN
MENTIONED AT ALL AS OTHER WAYS TO TEACH THE KIDS TO TEACH OR
TO HELP THEM TO COMMUNICATE.
>>: WELL TWO THINGS: WE DID STUDIES OF ADULTS AND SHOW GREATER
AFFIXATION OF THE MOUTH THAN THE EYES AND I SHOWED YOU
2‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓‬
THE FACT THAT YOU HAVE LESS FIXATION ON THE EYES, GREATER
FIXATION ON THE MOUTH DOES NOT MEAN THE SAME MECHANISM
APPLIES TO CHILDREN AMONG THIS AGE GROUP.
FOR THE OLDER ADULTS THEY FOCUS ON IT BECAUSE THAT'S WHERE
SPEECH COMES FROM AND AREN'T VERY SENSITIVE TO NONVERBAL AND
CONTEXTUAL CUES.
WITH THE VERY LITTLE ONES WHAT WE'RE SEEING IS THAT THEY ARE
NOT NECESSARILY ENGAGED WITH THE MORE REVEALS ASPECT OF THE
FACE LIKE THE EYES.
THEY ARE SEEKING BASICALLY A PHYSICAL CONTINGENCY THAT IS IN
THE MOUTH.
FOR EXAMPLE, THE SPEECH SOUNDS AND THE LIP MOVEMENTS.
THOSE ARE REFLECTIONS OF SOMETHING THAT IS HAPPENING IN THE
SOCIALIZATION IN THE MIND AND THE BRAIN.
AND IT'S IMPORTANT THAT WE SEPARATE THOSE TWO.
THEY DON'T HAVE AUTISM BECAUSE THEY DON'T FIXATE ON THE EYES.
THE REASON I SAY THIS IS SOMETIMES PEOPLE INTERPRET THESE THINGS
VERY CONCRETELY.
AND SAY MY CHILD IS NOT LOOKING AT ME, LET ME FORCE THE CHILD TO
LOOK AT ME.
AND WHAT YOU GET IS AN EYE GAZE TREATMENTS AND THE RESULT OF
WHICH IS STARING.
SO, THE CHILD IS LOOKING AT YOU AND THE IS LOOKED AT THE EYES BUT
STILL NOT GAINING INFORMATION.
SO THAT'S IMPORTANT FOR ME TO CONVEY.
IT'S A REFLECTION OF RATHER THAN THE CAUSE OF.
SO IN THAT SENSE I THINK WE CAN USE THESE AS MEASURES.
BUT THE FORMS OF TREATMENT THAT WE HAVE FOR SOCIAL AND
COMMUNICATION WE WANT TO MAKE ANY OF THE BEHAVIORS THEY
LEARN FUNCTIONAL.
WE MAY HAVE TO INTRODUCE THIS IN A VERY CONCRETE MANNER.
WE WANT TO CHILD TO BE ABLE TO USE ‫﷓﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓‬
KNOW WHO USED TO SPEAK VERY MONO TONICALLY ‫﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓﷓ ﷓ ﷓﷓ ﷓ ﷓‬
ABOUT THAT THAT MUCH.
BUT WITHOUT STRESSING EVERY WORD AND INFLECTION IN THE VOICE.
A WONDERFUL SPEECH THERAPIST RECORDED HIS VOICE AND PLAYED IT
BACK AND HELPED HIM MODULATE BETTER.
AND MOST OF THE TIME IT WORKS BUT SOMETIMES HE CAN STOP AND
SAY AM I MODULATING ENOUGH FOR YOU?
HE'S NOT NECESSARILY DOING THAT NATURALLY, SPONTANEOUSLY.
[CHUCKLING]
BUT IT WAS A WAY OF GETTING BETTER PERFORMANCE.
>>: ONE THING IN TERMS OF INTERVENTION.
WHAT WE HAVE LEARNED IS WE CAN FUNDAMENTALLY ALTER THE CORE
DEFICITS OF AUTISM EARLY IN LIFE.
ONE OF THE THINGS WE HAVE GOTTEN USED TO BY TREATING OLDER
KIDS WITH AUTISM IS TEACHING DISCRETE SKILLS.
AND WE HAVE GOTTEN A LITTLE BIT AWAY FROM TEACHING
CONCEPTUAL BASIS.
WITH THE TODDLERS, WE'RE REALLY BUILDING IN A STRONG
FRAMEWORK OF CONCEPTUALIZATION.
IN OTHER WORDS THEY HAVE A REASON TO GO TO THE FACE AND A
REASON TO GO TO THE EYES.
AND THEN SO AS AMI MENTIONED, YOU KNOW, WE REALLY WORK WITH
CONCRETE INITIAL FEEDBACK FOR USING FACIAL CUES BUT REALLY
STARTING THEM EARLY YOU CAN REALLY ALTER THE WAY CHILDREN
USE FACIAL CUES IN A WAY THAT IT'S HARDER TO GET TO LATER.
SO YOU'RE VERY INTUITIVE AND WE ARE DOING EXACTLY WHAT YOU'RE
HOPING WE WOULD BE DOING.
>>: LAST QUESTION.
RIGHT HERE.
>>: OKAY.
I AM CURRENTLY A POST ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND I HAVE ASPERGERS.
ANY COMMENTS ON THE ETIOLOGY?
INTO WE'RE FOLLOWING UP ON THAT STUDY IN COLLABORATION WITH
THE AUTHORS FROM HOPKINS AS WELL AS OUR GROUP.
THE HYPOTHESIS IS THAT IN THE INCREDIBLY SMALL FRACTION OF
CHILDREN IF YOU LOOK AT THAT STUDY CAREFULLY IT TOOK MORE
THAN A DECADE TO GET THAT POPULATION OF KIDS.
SO, THE NUMBER OF CHILDREN WHO HAVE INCREASED SOCIAL SKILLS,
EVEN SOME INCREASE IN COMMUNICATION DURING FEVER IS QUITE,
QUITE SMALL.
BUT WE'RE HOPING THAT THEY WILL SERVE AS A WINDOW INTO A GROUP
OF CHILDREN WHO MAY HAVE A NEUROINFLAMMATORY BASIS FOR
THEIR AUTISM.
DR. CARLOS AND HIS COLLEAGUES AT HOPKINS HAVE DONE WORK
DEMONSTRATES THAT THE CFC CYTOKINES AND OTHERS SHOW THAT IT
MIGHT EXPLAIN SOME OF THE DEFICITS AND IF SO MAY ALLOW FOR NEW
FREEMENT ‫﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓ ﷓﷓ ﷓ ﷓‬
AND THAT'S WHY WE'RE DOING A TRIAL TO INHIBIT NF KAPPA B.
>>: I WANT TO THANK THE PANEL THIS MORNING BECAUSE I THINK IT
WAS ONE OF THE BEST WE HAVE EVER HAD THROUGH.
SO THANK YOU.
[APPLAUSE]
>>: AND I ALSO WANT TO THANK YOU FOR YOUR ATTENTION VERY MUCH.

								
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