>>> I JUST WANTED TO WELCOME
EVERYONE HERE TO OUR CONTINUING
RECOGNITION OF AUTISM AWARENESS
MONTH.
THIS IS ONLY ONE OF MANY
ACTIVITIES, ACTUALLY, THAT HAVE
BEEN HAPPENING THOUGHT THE MONTH
THAT HAVE BEEN COORDINATED
THROUGH THE DEPARTMENT OF HEALTH
AND HUMAN SERVICES AND THE
VARIOUS DEPARTMENTS WITHIN IT.
I ALSO WANTED TO GIVE A SPECIAL
THANKS TO THE OFFICE OF AUTISM
RESEARCH COORDINATION FOR
HELPING US WITH THE -- PAYING
FOR THE VIDEO CAST, WHICH I HOPE
FOLKS WILL APPRECIATE, AND I
WANTED TO GIVE A SPECIAL THANKS
TO KAREN LEE AND CHRISTINE
COUCHER, WHO ARE UNSUNG HEROES
HERE THAT WORK BEHIND THE SCENES
TO HELP PROMOTE RESEARCH AND
PROMOTE THE SCIENTISTS.
AND THEY WERE VERY INSTRUMENTAL
IN COORDINATING THIS EVENT
TODAY.
SO THANKS TO THEM.
SO I'LL GO AHEAD WITH THE
INTRODUCTIONS IF THE THE FIRST
SPEAKER.
DR. SUSAN SWEDO IS CHIEF OF THE
PEDIATRICS AND DEVELOPMENTAL
NEUROSCIENCE BAN HERE.
SHE RECEIVED HER BA AND HER
MEDICAL DEGREE FROM SOUTHERN
ILLINOIS SCHOOL OF UNIVERSITY
MEDICINE.
SHE MOVED TO THE WASHINGTON AREA
IN 1986 TO JOIN THE STAFF OF THE
CHILD PSYCHIATRY BRANCH AT NIMH
WHERE SHE CONDUCTED RESEARCH ON
CHILDHOOD OBSESSIVE COMPULSIVE
DISORDER.
SHE AND HER COLLEAGUES WERE THE
FIRST TO IDENTIFY A NEW SUBTYPE
OF PEDIATRIC OCD IN WHICH
SYMPTOMS ARE TRIGGERED BY
ANTIBODIES PRODUCED IN RESPONSE
TO STREPTOCOCCAL INFECTIONS.
THIS WORK LED TO THE DEVELOPMENT
OF SEVERAL NOVEL THERAPIES,
INCLUDING THE USE OF IFIG AND
PLASMA TO TREAT ACUTELY ILL
CHILDREN AND THE USE OF
ANTIBIOTIC TREATMENT TO PREVENT
THE WORSENING OF MENTAL DISORDER
SYMPTOMS TRIGGERED BY STREP.
IN PLAY 2006, DR. SWEDEO
ESTABLISHED A MULTIDISCIPLINARY
CLINICAL RESEARCH TEAM AT NIMH
DEDICATED TO STUDIES OF AUTISM
SPECTRUM DISORDERS AND RELATED
NEURODEVELOPMENTAL DISORDERS.
HER CURRENT RESEARCH EFFORTS ARE
DIRECTED AT IDENTIFYING
BIOLOGICAL CAUSES FOR BEHAVIORAL
SYNDROMES AND DEVELOPING NEW AND
MORE EFFECTIVE THERAPIES.
>> THANK YOU VERY MUCH.
APPRECIATE THE INVITATION.
THERE IS ONE LINE MISSING IN MY
BIO, AND THAT IS NO, IT'S NOT
YOUR FAULT AT ALL.
I KEPT IT OUT ALL THESE YEARS.
IT'S THAT THIS DISCONNECT FOR
DOING OCD FOR 20 YEARS AND
MOVING INTO AUTISM.
THAT CHANGED HAPPENED IN THE
EXTRAMURAL PROGRAM WITH THE
RECOGNITION THAT YOU THERE IS
MUCH MORE ABOUT AUTISM THAT IS
UNKNOWN BUT THAT IT HAS MANY
FEATURES IN COMMON WITH OCD AND
OTHER DISORDERS WITH WHICH I'M
MORE COMFORTABLE AND FAMILIAR,
AND THAT IS THE FACT THAT IT'S A
BRAIN-BASED NEURODEVELOPMENTAL
DISORDER AND THAT WE HAVE THE
OPPORTUNITY TO APPROACH IT IN
VERY DIFFERENT WAYS.
I'M GOING TO DO -- A 50,000-FOOT
VIEW OF THE ADVANCES IN
TREATMENT TODAY.
OUR PROGRAM IS RELATIVELY NEW
AND WE HAVE A COUPLE OF EXCITING
LEADS BUT NOTHING THAT IS READY
FOR PRIME-TIME.
SO I THOUGHT I WOULD FOCUS MORE
ON WHAT IS AVAILABLE IN THE
COMMUNITY AND SOME OF THE VERY
EXCITING ADVANCE THAT IS HAVE
BEEN MADE WITH NIMH AND THE NIH
DOLLARS.
SO, THIS IS AN INCREDIBLY LONG
LIST.
AS YOU LOOK AT IT, YOU'RE STRUCK
BY THE FACT THAT IT'S LONG AND
VERY COMPREHENSIVE.
FOR THOSE HERE, YOU PROBABLY
CAN'T READ IT BUT I MADE ALL OF
MY SLIDES VERY WORDY SO THE
INFORMATION WOULD BE AVAILABLE
WHEN IT'S POSTED ON THE WEB.
ALL OF THESE THERAPIES HAVE IN
COMMON, THEORETICAL CONSTRUCT IN
WHICH THEY ARE ADDRESSING THE
CORE SYMPTOMS OF AUTISM OR THE
ASSOCIATED SYMPTOMATOLOGY.
SOME ARE CLAIMED TO BE QUITE
EFFECTIVE.
OTHERS ARE CONSIDERED SOMEWHAT
EXPERIMENTAL AND STILL OTHERS
ARE CONSIDERED TO BE ODD.
SO, AS YOU GO THROUGH THAT LIST
AND SEE THINGS AS DIVERGENT AS
ARMING THERAPIES AND FACILITATED
COMMUNICATION CENSORING MOTOR
THERAPIES, WHAT THEY ALL HAVE IN
COMMON IS TRYING TO GET TO THE
BRAIN THROUGH ADAPTATION OF
BEHAVIOR.
ON THE OTHER SIDE OF THE SLIDE
IS THE BIOMEDICAL DIETARY AND
MEDICAL INTERVENTIONS FOR
AUTISM.
THE BIOMEDICAL IS PROBABLY THE
MOST WIDELY USED OF THE
NON-BEHAVIORAL INTERVENTIONS AND
IS ONE OF THE MOST DIFFICULT TO
STUDY.
UPON UNTIL RENTLY IT WAS CATCH
AS CATCH CAN.
IF IT WORKED FOR SOMEBODY YOU
KNEW, YOU TRIED IT WITH YOUR OWN
CHILD AND AIRPORT ADVOCACY
GROUPS WORTH TOGETHER TO SHARE
NEWS ABOUT WHICH THERAPIES
SEEMED TO BE THE MOST PROMISING.
VITAMINS AND SUPPLEMENTS, THAT'S
SOMETHING THAT WE COULD SPEND
FRANKLY THE WHOLE DAY ON.
THE THEORIES BEHIND THE USE OF
PARTICULAR VITAMINS, PARTICULAR
SUPPLEMENTS OR THE COMBINATION
THEREOF.
AND TODAY, I'M GOING TO FOCUS
MORE ON SOME OF THE REASONS THAT
WE MIGHT WANT TO BE CAUTIOUS
ABOUT THESE AND EVEN THOUGH THEY
ARE NATURAL COMPOUNDS, TO
REMEMBER THAT ANYTHING IN EXCESS
CAN HAVE ADVERSE EFFECTS.
PHARMACOTHERAPY HAS BEEN
SOMEWHAT DISAPPOINTING.
ALTHOUGH, THE SYMPTOMS THAT HAVE
PROVEN TO BE MELIORATED BY
MEDICATIONS ARE CERTAINLY SOME
OF THE MOST TROUBLESOME AND
THOSE STUDIES ARE TREMENDOUSLY
IMPORTANT.
SO, AS I LOOKED AT IT, I THOUGHT
THERE WERE THREE TARGETS WITHIN
AN INDIVIDUAL WHO HAS AN AUTISM
SPECTRUM DISORDER.
THERE IS THE CORE SYMPTOMS OF
AUTISM, ASSOCIATED FEATURES OF
AUTISM AND THOSE ARE THE ONES
THAT MAKE US CRAZY.
HOW MUCH OF IT IS CORE TO THE
DISEASE THAT IS GIVING YOU THE
SOCIAL COMMUNICATION DEFICITS
AND THE RESTRICTIVE INTEREST AND
REPETITIVE BEHAVIORS, AND HOW
MUCH IS JUST THE TRUE, TRUE
UNRELATED PHENOMENON IF YOU HAVE
A DISORDER THAT IS NOW REPORTED
TO AFFECT 1-100 INDIVIDUALS,
THAT OF THOSE 1-100 CHILDREN,
THEY ALSO HAVE THAT 1-1,000 OR
1-5,000 CHANCE OF HAVING ANOTHER
CONDITION THAT IS GOING TO BE
IMPAIRING FOR THEM?
AND THE FINAL ONE IS
CO-OCCURRING CONDITIONS.
THE DSM5 NEURODEVELOPMENTAL WORK
GROUP SPENT A LOT OF TIME ON
THIS OVER THE PAST FEW YEARS
TRYING TO FIGURE OUT HOW ARE WE
GOING TO CLASSIFY THESE THINGS
AS NEW GENES ARE DISCOVERED
EVERY DAY OR NEW RELATIONSHIPS
ARE DISCOVERED.
SO IT'S DETERMINED THAT RATHER
THAN TRY TO DO WHAT HAD BEEN
DONE IN PREVIOUS VERSIONS OF THE
DSM MANUAL, AND THAT WAS TO
CLASSIFY THINGS BY REPS OR OTHER
SPECIFIC DISORDERS, THAT WE
WOULD DEFINE THE BEHAVIOR,
AUTISM SPECTRUM DISORDERS, AND
THEN HAVE A SPECIFIER ASSOCIATED
WITH A KNOWN MEDICAL GENETIC OR
ENVIRONMENTAL CONDITION.
AND BY DOING THAT, THAT ALLOWS
TO YOU TRACK ALL OF THOSE THINGS
THAT MAY END UP BEING OF
INTEREST, WHETHER IT'S FRAGILE X
OR IT'S EXPOSURE TO PKU DURING
PREGNANCY.
SO THE CORE SYMPTOM
REMAINS -- THIS IS AUTISM MONTH.
AND I'M SURE I DON'T HAVE TO
TELL ANY OF YOU.
BUT I GROUPED THE SLIDE THIS WAY
IN THE CLASSIC TRIO.
THIS IS THE WAY IT WILL LOOK IN
DSM5.
STUDIES HAVE DEMONSTRATED THAT
IT'S REALLY VERY, VERY DIFFICULT
TO SEPARATE THOSE ASPECTS OF
AUTISM SYMPTOMS COMING FROM
BASIC DEFICITS IN SOCIAL
COGNITION FROM THOSE THAT ARE
HAPPENING IN SOCIAL
COMMUNICATION.
AND SO, IT WILL BE SOCIAL
COMMUNICATION DEFICITS THAT WILL
ENCOMPASS THAT ENTIRE SCENARIO
WITH THE SUNDAYING THAT SOME
CHILDRENNING GOING TO BE MORE
IMPAIRED IN SPECIFIC AREAS THAN
OTHERS.
AND THEIR INTERACTIONS.
AND THEN REPETITIVE BEHAVIORS
AND RESTRICTED INTERESTS.
AGAIN, COMING AT THIS FROM
OBSESSIVE COMPULSIVE DISORDER,
ONE OF MI FIRST QUESTION IS,
THIS REALLY CORE TO AUTISM OR
JUST IN THOSE FEW PATIENTS THAT
WE FIRST OBSERVED?
AS LOOK AT THE DATA FROM NUMBERS
OF STUDIES, INCLUDING THE CPA
AND STAR CENTERS FUNDED BY THE
NIH, IT BECOMES VERY CLEAR THE
BEST MEASURE OF SPECIFICITY IS A
REQUIREMENT THEY HAVE REPETITIVE
BEHAVIORS AND RESTRICTED
INTERESTS.
NOW IT CAN ALSO BE THE FACTOR
THAT MAKES IT THE LEAST SPECIFIC
AND THE MOST DIFFICULT TO
SEPARATE, BECAUSE INDIVIDUALS
WITH SEVERE INTELLECTUAL
DEFICITS WILL ALSO HAVE VERY
HIGH LIKELIHOOD OF HAVING
REPETITIVE BEHAVIORS AND
RESTRICTED INTERESTS.
SO, AS I STARTED TO DO THIS PART
OF THE TALK, IT BECAME EVEN
HARDER BECAUSE WE HAD TO DEFINE
SUCCESS OF TRAINING AUTISM.
EVERYBODY CAN AGREE IF YOU ENDED
U7 AFTER YOUR TREATMENT WITH NO
DEFICITS IN SOCIAL COMMUNICATION
AND NO IMPAIRMENTS FROM THE
RESTRICTED INTERESTS, REPETITIVE
BEHAVIORS, IE, A CURE, YOU WOULD
HAVE BEEN SUCCESSFUL.
BUT HOW MUCH DO YOU NEED BELOW
THAT IN ORDER TO CALL IT A
SUCCESS AND HOW MUCH DO YOU NEED
IN ORDER TO DETERMINE THAT THAT
INTERVENTION IS WORTH THE MONEY,
THE TIME AND THE EFFORT AND MOST
IMPORTANTLY, IF THERE ARE
ADVERSE EFFECTS.
SO WE HAVE TO OBJECTIVE, VAL I
WOULD AND RELIABLE FEASIBLE
ASSESSMENTS -- VALID AND
RELIABLE FEASIBLE ASSESSMENTS.
I THINK WE ARE ALL STILL HOPING
THAT WE WILL COME UP WITH EVEN
MORE SENSITIVE AND SPECIFIC
MEASURES OF CHANGE ACROSS TIME.
ONE OF THE DIFFICULT THINGS WHEN
YOU'RE TRYING TO MEASURE A GAIN
IN FUNCTION, IE, A REMEDIATION
OF THAT DEFICIT.
IT'S THE FACT THAT YOU DON'T
KNOW UPFRONT WHAT OPTIMUM
FUNCTIONING IS.
WHEN YOU GET A DISORDER LIKE
DEPRESSION, OCD, ANXIETY
DISORDERS, YOU KNOW THAT WHEN
THOSE SYMPTOMS ARE GONE AND THE
PERSON GOES BACK TO THEIR
BASELINE, YOU HAVE ACHIEVED A
CURE.
BUT WHEN YOU HAVE A CHILD WHO IS
TWO OR WE TALK ABOUT VERYING
TODDLERS DOING EARLY
INTERVENTIONS, HOW DO YOU KNOW
WHERE THEIR BASELINE WOULD HAVE
BEEN IF THE AUTISM WASN'T
AFFECTING THEM?
SO AT THAT NATURAL AND UNTREATED
HISTORY WAS EQUIVALENT AND YOU
ACTUALLY NOT SPENT YOUR TIME AND
ENERGY EFFECTIVELY, THAT WOULD
BE A COST BENEFIT RATIO THAT
SHOULD BE COUNTED IN THAT
TREATMENT.
HOWEVER, BECAUSE OF THE
OBSERVABLE AFFECTS OF THESE
EARLY INTERVENTION STUDIES, IT'S
BECOME BASICALLY UNETHICAL TO
NOT OFFER ANNIE EARLY
INTERVENTION OR EARLY TREATMENT.
BECAUSE YOU ARE THEN WITHHOLDING
A POTENTIAL BENEFIT FROM THAT
CHILD IN ORDER TO COMPARE THEIR
OUTCOME WITH OTHERS.
SO YOU END UP USING HISTORICAL
CONTROLS, WHICH ARE VERY, VERY
UNSATISFACTORY BECAUSE OF
DIFFERENCES IN ASSESSMENT
TECHNIQUES, DIFFERENCEES FROM
REPORTING OF THOSE DEFICITS, OR
PROBABLY MUCH MORE EFFECTIVELY,
YOU BEGIN TO COMPARE TWO
THERAPIES THAT ARE REPORTED TO
BE HELPFUL AGAINST EACH OTHER.
SO WHEN WE DO THAT, IT REALLY
COMES DOWN TO SOME OF THE
TECHNIQUES YOU'LL HEAR ABOUT I
WAS QUITE SURPRISED IN A REVIEW
THAT WAS JUST PUBLISHED THIS
MONTH IN PEDIATRICS, TO DISCOVER
THAT THERE IS ONLY BEEN TWO
RANDOMIZED CONTROL TRIALS FOR
THE BEHAVIORAL INTERVENTIONS.
ONE FOR ADA AND ONE FOR THE
EARLY START MODEL.
THERE HAVE BEEN A NUMBER OF CASE
SERIES SORT OF THE CONCLUSION OF
THIS METANALYSIS WAS THAT WE
BELIEVE THESE THERAPIES WORK.
THAT APPEAR TO WORK BUT THE
EVIDENCE IS LACKING FOR THE
MAJORITY.
SO ONE OF THE THINGS THAT NEEDS
TO HAPPEN IS WHAT IS ALREADY
BEING SUPPORTED THROUGH THE
EFFORTS AT THE NIH SUPPORTING IN
TERMS OF BEING ABLE TO DO MUCH
MORE EFFECTIVE CROSS-SITE
COMPARISONS AND CROSS-SITE
WORKING TOGETHER.
SO WITH THE EIGHT CENTERS AND
NETWORKS GATHERING COMMON
MEASUREOS THEIR CHILDREN AND
THEN AS THEY FOLLOW THOSE
INDIVIDUALS OVER TIME OR ADULTS,
I KEEP TALKING ABOUT CHILDREN,
FORGIVE ME.
I'M STILL A PEDIATRICIAN.
THE INDIVIDUALS WHO ARE AFFECTED
BY AUTISM, THAT WILL BE ABLE TO
MAKE SOME MUCH MORE EDUCATED
DETERMINATIONS OF WHICH APPROACH
IS SUPERIOR, AND EVEN MORE
IMPORTANTLY TO BEGIN TO PREDICT
WHICH KIDS ARE GOING TO RESPOND
BEST TO WHICH KIND OF
INTERVENTION AND OFFER THEM
INDIVIDUALIZED PERSONALIZED
THERAPY.
SO ONE OF THE THINGS THAT BECAME
CLEAR AS I REVIEWED THIS
LITERATURE WAS THAT THE
BIOMEDICAL THERAPIES HAVE REALLY
HAD A SEA CHANGE IN TERMS OF
REQUIRING THEIR OWN STANDARDS.
WE JUST MENTIONED HOW DIFFICULT
IT IS TO ASSESS OUTCOMES AND
CHANGE WHEN YOU'RE DIE AG
BEHAVIORAL INTERVENTION THAT MAY
TAKE 3, SIX, NINE MONTHS OR TWO
YEARS OR LONGER IN ORDER TO FEEL
LIKE YOU CAN MAXIMIZE THE
BENEFITS.
WITH BIOMEDICAL INTERVENTIONS,
THEY ARE TYPICALLY TOUTED AS
BEING EFFECTIVE WITHIN A MATTER
OF DAYS, WEEKS OR MONTHS.
SO THAT'S LED TO THE OPPORTUNITY
TO BE ABLE TO EXAMINE THEM MUCH
MORE EFFECTIVELY.
OPEN LABEL TRIALS ARE ALWAYS,
ALWAYS HELPFUL AND ONE OF MY
FAVORITE EXAMPLES IS ALMOST
SIMULTANEOUS PUBLICATION.
NOW THE PAPER DESCRIBING A CASE
SERIES OF INDIVIDUALS WITH
AUTISM WHO BENEFITED FROM
OWNERSHIPPOID ADMINISTRATION,
GIVING THEM NARCOTICS -- OPIOID
ADMINISTRATION -- AND ANOTHER
PAPER IN THAT SAME TIMEFRAME
REPORTING THAT MALTEXONE A
NARCOTIC ANTAGONIST WAS
EFFECTIVE IN TREATING THE
SYMPTOMS OF AUTISM.
SO OPEN-LABEL THERAPIES ARE
ALWAYS SUSPECT, PARTICULARLY
WHEN YOU HAVE SECOND HAND
REPORTS FROM PARENTS, TEACHERS
AND OTHER CAREGIVERS.
OF WHAT YOU'RE OBSERVING IN THAT
AFFECTED INDIVIDUAL.
AND THAT CERTAINLY WAS THE CASE
HERE.
I WOULD SAY THE MOST PAPERS THAT
HAVE BEEN PUBLISHED ABOUT
MERCURY AND IT'S EDIOLOGGIC
ROLE.
MORE PAPERS HAVE BEEN PUBLISHED
ON SEEKRA TIN THAN ANY OTHER
INTERVENTION.
DOZENS OF OPEN-LABEL, SMALL CASE
SERIES EACH OF WHICH DEMONSTRATE
A SIGNIFICANT BENEFIT FROM A
HORMONE THAT NOTONY WAS
EXPENSIVE BUT DIFFICULT TO
ADMINISTER AND QUITE HIGH-TECH
INS AN MID -- ADMINISTRATION.
PLACEBO AFFECT IS NOT JUST WHAT
YOU'RE GIVING, IT'S ONE OF THE
THINGS WORKING IN THE INTRAMURAL
PROGRAM WE ARE COG CENTS OF THE
FACT THAT YOU COME TO THE NIH
AND YOU GO THROUGH THAT BIG
FENCE, IT'S A BIG DEAL.
SOME OF THAT MAY EXPLAINS WHY
THESE PARENTS AND THE OTHER
REPORTERS WERE SEEING SUCH
BENEFITS BECAUSE THE CONTROL
TRIAL WAS ACTUALLY STOPPED EARLY
BECAUSE NOT ONLY WAS THERE NO
BENEFIT OF SEEKRA TIN BUT THE
ADVERSE EFFECTS WERE BEING
REPORTED AND SUGGESTED IT MIGHT
BE HARMFUL TO THESE CHILDREN.
THERE WERE DOZENS OF THINGS ON
THAT LIST.
CHELATION, VITAMIN SUPPLEMENTS,
SPECIAL DIETS, AND ONE I HAVE
ALWAYS HAD DIFFICULTY WITH WAS
HUBER BARIC OXYGEN THERAPY.
I DIDN'T UNDERSTAND THE PEMMICON
WHICH IT WOULD BE USEFUL TO
INDIVIDUALS.
YET I HAD MET FAMILIES IN WHOM
THEY SWORE THIS WAS THE MOST
EFFECTIVE THERAPEUTIC THEIR
CHILD OR LOVED ONE HAD USED.
SO, THE AUTISM RESEARCH
INSTITUTE TOOK THIS AS A
CHALLENGE BECAUSE THEY WERE
ALLOWING EXHIBITORS TO BRING
THEIR H CHAMBERS TO THEIR ANNUAL
MEETINGS AND SELL THEM TO THE
FAMILIES T COST APPROXIMATELY
$19 THON YO VERY
OWN -- $19,000 -- IT IS VERY
EXPENSIVE BUT IF YOU GO TO A H
THERAPY CLINIC, IT'S $5,000 FOR
A SERIES OF DIVES AND FAMILIES
WOULD BE TAKING OUT SECOND
MORTGAGES BECAUSE THE THIRD AND
FOURTH SERIES OF DIVES HASN'T
HELPED BUT MAYBE THAT NEXT SET
OF 20 WE WOULD.
SO THE FIRST TO DO A
PLACEBO-CONTROLLED TRIAL OF H
BOT.
IT WAS FOLLOWED WITH POSITIVE
RESULTS BECAUSE HE HAD CHANGES
IN ONE MEASURES OF OUTCOME.
OTHER HAD BEAUTIFULLY
DEFINITIVELY NEGATIVE STUDIES
AND DAN IS NOW NOT ALLOWING THE
MANUFACTURERS AND PURVEYORS OF
THE CHAMBERS AT THEIR MEETINGS.
I THINK THIS IS A HUGE ADVANCE
TO BE PERFECTLY HONEST.
BECAUSE IT DIDN'T HURT THE
CHILDREN TO BE IN THAT CHAMBER,
BUT IT CERTAINLY HURT FAMILIES
TO BE SPENDING THOUSANDS AND
THOUSANDS OF DOLLARS ON
SOMETHING THAT WASN'T USEFUL,
NOT TO MENTION THE FACT THAT THE
HOURS THEY WERE SPENDING IN THAT
CHAMBER WERE HOURS THE CHILD
WASN'T BEING OFFERED PERHAPS
MORE USEFUL THERAPIES.
SO, IT'S REALLY NOT BAD NEWS.
AND I FEEL SOMETIMES LIKE WE ARE
THE MYTH BUSTERS OF THIS STAGE
IN AUTISM RESEARCH.
BUT THE MORE MYTHS YOU CAN BUST,
THE FASTER WILL YOU GET AT THE
TRUTH AND THE MORE USEFUL IT
WILL BE TO FAMILIES.
SO DIETARY INTERVENTIONS IS ONE
THAT IS EQUALLY CURIOUS.
AND EQUALLY WELL SUPPORTED,
WHERE YOU HAVE REPORTS OF
INDIVIDUALS WHO WERE NOT
RESPONDING AT ALL TO THEIR
BEHAVIORAL INTERVENTIONS UNTIL
THEY BEGAN THE GLUTEN-FREE DIET.
AS YOU LISTEN TO THE STORIES
BEHIND IT, THOSE INDIVIDUALS
USUALLY HAD SOME GI SYMPTOMS
THAT MIGHT BE CONSISTENT WITH
SEALIAC DISEASE, FOOD ALGAES OR
OTHER THINGS.
SO THAT POPULATION OF PATIENTS
MIGHT BE QUITE USEFUL.
IT'S NOT AS CLEAR IT IS AS
USEFUL TO THE GENERAL POPULATION
OF THOSE WITH AUTISM AND ONE OF
THE THINGS THAT IS HAPPENING
WITH NIH SUPPORTED
GRANTS -- EXCUSE ME, NIH
SUPPORT, IS THE EFFECTIVENESS
AND EFFICACY OF THESE DIEETS ARE
BEING TESTED.
IN THE TRAIN NEWSPAPER PROGRAM
WE ARE NOT DOING TRIALS BUT
LOOKING AT A NATURALISTIC
WAY -- INTRAMURAL PROGRAM -- AT
THE NUTRITIONAL STATUS OF KIDS
ON THESE DIETS SPECIFIC
CARBOHYDRATE DIETS VERSUS THOSE
ON UNRESTRICTED DIET.
INTERESTINGLY, THEY ALL EAT
CHICKEN NUGGETS.
SOME EAT THEM WITH BREADING AND
SOME WITH A GLUTEN-FREE COATING.
BUT NUGGETS ARE A MAIN STAY OF
THE YOUNG CHILD'S DIET WITH
AUTISM.
SO, WITHIN THAT, IT APPEARS THAT
THERE ARE IMPORTANT DIFFERENCES
IN THE ABILITY OF CHILDREN TO
GET THE NUTRIENTS THEY NEED AND
ONE OF THE THINGS THAT IS NOW
COMING OUT IS CASE SERIES IN
OPEN LABEL REPORTS OF ADVERSE
EVENTS OF THIS, INCLUDING
AUTISTIC CHILDREN WITH RICKETS
BECAUSE OF THE WITHHOLDING OF
CASING AND SUBSEQUENTLY CALCIUM
AND VITAMIN D.
THE VITAMINS AND SUPPLEMENTS
SIMILAR WARNINGS.
I THINK THAT WE HAVE TO REMEMBER
THAT JUST BECAUSE IT'S NATURAL
DOESN'T MEAN IT IS GOOD FOR YOU.
IF IT WERE, WE WOULD BE ABLE TO
EAT HEMLOCK AND ALL KINDS OF
THINGS BUT WE KNOW IT TO BE
POISONOUS.
SO ONE OF THE BEST EXAMPLES IS
VITAMIN B6.
IT IS ON SOME OF THE NATURAL
TREATMENT PROTOCOLS BECAUSE IT'S
WATER SOLUABLE VITAMIN.
YOU SHOULD GIVE IT IN LARGE
AMOUNTS, EVEN GIVE IT IN SUB Q
INJECTION TO MAKE SURE IT GETS
INTO THE CHILD'S SYSTEM.
THE PROBLEM IS THAT OUR
NON-EVENTUAL INDIVIDUALS AREN'T
ABLE TO TELL US ABOUT THE
SENSORY NEUROPATHIES.
THE NUMBNESS, TINGLING AND
DIFFICULTIES THEY ARE HAVING IN
THE PERIPHERAL NERVES A KNOWN
SIDE EFFECT OF VITAMIN B6.
I THINK THIS IS PROBABLY ONE OF
THE NEXT AREAS OF JUST A
METAREVIEW AND SOME GOOD
MARRIAGE OF WHAT IS HAPPENING IN
THE COMPLEMENTARY ALTERNATIVE
MEDICINE COMMUNITY AND WHAT IS
HAPPENING IN THE REGULAR MEDICAL
COMMUNITY.
PHARMACOLOGIC INTERVENTIONS, ONE
OF THE MOST PROMISING HAS BEEN
OXYTOCIN.
I'M NOT GOING TO GO INTO DETAILS
BECAUSE WE WILL HAVE A LECTURE
ON THAT LATER THIS WEEK.
MAYBE IT'S NEXT WEEK.
MUST BE NEXT WEEK.
TODAY, THANK YOU.
WHAT TIME?
[LAUGHTER]
3:00.
SO COME BACK.
I WILL TRY.
AT ANY RATE, OXYTOCIN IS A PRO
SOCIAL HORMONE, ALTHOUGH SOME
STUDIES SUGGEST IT'S JUST PRO
REACTIONS AS NEGATIVE AND
POSITIVE RESPONSE ENHANCED.
BUT IT SUMMERY IS A DIFFICULT
THING TO TEST FOR TREATMENT
EFFECTIVENESS BECAUSE THE
CURRENTLY AVAILABLE PREPARATIONS
HAVE AN EXTREMELY SHORT
HALF-LIFE.
THERE IS NOT GOOD EVIDENCE THAT
THEY ACTUALLY CROSS THE BLOOD
BRAIN BARRIER.
THAT THEY ARE HAVING AN EFFECT
IN THE PLACE YOU WANT THEM TO.
IT WOULD BE NICE IF SOME OF THE
STUDIES BEING DONE, INCLUDING
ONE IN OUR GROUP USING FMRI TO
EXAMINE THE EFFECTS OF AN ACUTE
DOSE OF OXYTOCIN ON SOCIAL
RESPONSIVENESS PROVE USEFUL.
IF THEY DO, NO REASON TO NOT
PROCEED WITH FINDING LONGER
ACTING COMPOUNDS, FINDING WAYS WAY
FOR DIRECT DELIVERY OR TO GET
THOSE DRUGS ACROSS THE BLOOD
BRAIN BARRIER.
I THINK IT'S AN AREA THAT WE
SHOULD ALL BE WATCHING BECAUSE
IT HAS TREMENDOUS PROMISE.
THEORETICALLY IT'S A
TREMENDOUSLY EXCITING, AND I
THINK THAT MIKE WILL TALK ABOUT
THIS IN A MOMENT, IT'S ONE OF
THE OF THOSE THAT EVEN THOUGH
YOU HAVE AN ADULT INDIVIDUAL
WITH AN AUTISM SPECTRUM
DISORDER, OXYTOCIN MIGHT HAVE
THE PROMISE OF HAVING BENEFITS
EVEN LATER IN LIFE.
OTHER DRUGS THAT HAVE BEEN TRIED
AND FOUND TO BE USEFUL, INCLUDE
THE SSRIs, AGAIN JUST
OPEN-LABEL REPORTS TO DATE.
THE EVIDENCE CONSIDERED
INSUFFICIENT TO SUPPORT ITS USE
BECAUSE THE CONTROL TRIALS THAT
HAVE BEEN DONE HAVE NOT SHOWN
SIGNIFICANT BENEFITS.
MOST RECENTLY --
[INDISCERNIBLE]
AN INDICATION FOR TREATMENT FOR
AUTISM SPECTRUM DISORDERS.
IT WAS THE FIRST MEDICATION TO
RECEIVE SUCH AN INDICATION FROM
THE FDA AND THAT WAS BECAUSE
THEY SAW A SIGNIFICANT REDUCTION
IN REPETITIVE BEHAVIORS,
LOOSENING OF THE FIXIATED
INTERESTS AND RESTRICTED
BEHAVIORS AND ALSO AS WE NOTE IN
A MOMENT, DECREASE IN ADVERSE OR
EXCUSE ME, AGGRESSIVE BEHAVIORS.
NONPHARMACOLOGIC TARGETS INCLUDE
GLUTAMATE, A NUMBER OF DRUGS ARE
BEING TRIED AND PERHAPS THE MOST
INTERESTING ADVANCES HAVE BEEN
ACTUALLY MADE IN ONE OF THE
SISTER DISORDERS, FRAGILE X, IN
WHICH AUTISTIC SYMPTOMS ARE
OBSERVED IN 1-5 PATIENTS WITH
FRAGILE X SYNDROME.
AND IT'S KNOWN THAT THAT GENETIC
DEFECT CAUSES ABNORMALITIES OF
THE M GLUE RECEPTIN.
AND MOST EXCITING IS THE FACT
THAT EVEN ADULT ANIMAL MODELS
HAVE DEMONSTRATED BENEFITS OF
TREATMENT WITH M GLUE R5
ANTAGONISTS IN PARTICULAR.
SO, THE CORE SYMPTOMS AND
ASSOCIATED FEATURES.
I'M ALMOST OUT OF TIME.
I DON'T WANT TO STEP ON
DR. LANGER'S TIME.
WE'LL JUST SAY LOTS AND LOTS OF
THINGS ARE ASSOCIATED WITH
AUTISM AS I TOLD YOU.
IT IS BECAUSE THEY ARE PART OF
THAT CORE DISEASE DISORDER, OR
IS IT A TRUE TRUE UNRELATED?
SOME OF THEM WE THINK REALLY ARE
VERY INTEGRAL TO THE SAME BRAIN
PROBLEMS THAT ARE GIVING THEM
THE INDIVIDUAL SOCIAL COGNITIVE
DEFICITS.
AND AMONG THESE ARE ANXIETY,
FEEDING PROBLEMS, BEHAVIORAL
PROBLEMS.
I THINK THAT THERE IS A LOT OF
PROGRESS THAT HAS BEEN MADE HERE
IN LARGE PART BECAUSE THESE
SYMPTOMS ARE NOT UNIQUE TO
AUTISM SPECTRUM DISORDER.
THEY ARE SEEN IN INDIVIDUALS
WITH DEVELOPMENTAL DELAYS,
TYPICALLY DEVELOPING CHILDREN
AND SEEN IN CHILDREN WHO DEVELOP
CHRONIC ILLNESSES OR PSYCHIATRIC
DISORDERS.
SO WE KNOW MORE ABOUT HOW TO
TREAT THAT SYMPTOM IN A
DIFFERENT INDIVIDUAL AND THEN AS
A MATTER OF ADAPTING THOSE
TREATMENTS TO AN INDIVIDUAL WITH
ASD.
THERE HAS JUST BEEN A NEW PAPER
PUBLISHED SHOWING THAT OMEGA-3
FATTY ACIDS MIGHT BE HELPFUL FOR
HYPERACTIVITY NEINDIVIDUALS WITH
AUTISM.
WE NEED TO TAKE THAT WITH A
GRAIN OF SALT BECAUSE THERE WERE
THREE SMALL RCTs OF OMEGA-3
EFFECTIVENESS FOR ADHD AND
TYPICALLY DEVELOPING INDIVIDUALS
BUT WHEN THE LARGER TRIAL WAS
DONE, IT WASN'T SHOWN TO BE
SIGNIFICANTLY BETTER THAN
PLACEBO.
OUR GROUP IN THE INTRAMURAL
PROGRAM FOCUSED ON THE SLEEP
DISTURBSES ASSOCIATED WITH
AUTISM.
THIS WAS ALMOST AN ACCIDENT.
WE CHECKED THE BOX FOR
POLYSTENNOGRAPHY AS WELL AS FOR
OVERNIGHT EEG AND THEY KINDLY
READ THEM BOTH.
AND DISCOVERED THE CHILDREN IN
THE AUTISM GROUP HAD VERY, VERY
LOW REM PERCENTAGES SLEEP.
THE TIME YOU DREAM AND THE TIME
WHEN IT'S NOT THAT MEMORIES ARE
CONSOLIDATED WHICH IS ESSENTIAL
FOR LEARNING FROM THAT PLATFORM
THE NEXT DAY.
I GOT REALLY EXITED ABOUT THIS.
BECAUSE THAT MAKES A LOT OF
SENSE ABOUT HOW AUTISM MIGHT
HAPPEN IF YOU START OVER EVERY
DAY FRESH AND NEW IT'S LIKE 50
FIRST DATES WHERE EVERY MORNING
SHE HAD TO RELEARN THAT SHE WAS
IN LOVE WITH THE GUY?
THAT'S A DIFFERENT STORY.
BUT, THE CONCEPT THAT YOU DON'T
HAVE THAT PLATFORM THAT YOU
BUILT SO CAREFULLY THE DAY
BEFORE, IT MIGHT ALSO BE A
CONSTRUCT WHICH WOULD MAKE SENSE
FOR THE EFFECTIVENESS OF
REPETITIVE REPETITION OVER AND
OVER AGAIN OF THE SAME
BEHAVIORS, CHANGES AND PATTERNS
AND CHANGES OF PATHWAYS BY WHICH
IT IS LEARNED.
SLEEP PROBLEMS ARE NEARLY
UBIQUITOUS, AT LEAST IN CHILDREN
WITH AUTISM.
AND WHEN YOU SPEAK WITH ADULTS
WITH AUTISM SPECTRUM DISORDERS,
IT REMAINS PROBLEMATIC
THROUGHOUT LIFE.
TROUBLE FALLING ASLEEP, STAYING
ASLEEP, WAKING UP IN THE NIGHT
AND VERY CURIOUS NEED FOR VERY
LITTLE SLEEP WHICH YOU CAN
IMAGINE QUITE PROBLEMATIC IN A
SERIOUSLY AFFECTED INDIVIDUAL
AND FOR THE CAREGIVERS WHO HAVE
TO FIGURE OUT A SCHEDULE BY
WHICH SOMEBODY CAN BE AWAKE 20
HOURS ADAY TO MAKE SURE THE
PERSON DEPARTMENT WANDER.
IN OUR STUDY WE DIDN'T HAVE A
LOT OF PARENTAL REPORTS OF SLEEP
DIFFICULTIES.
IN GENERAL, THE PARENTS THOUGHT
THE KIDS WERE SLEEPING PRETTY
WELL.
IT'S A VERY YOUNG COHORT.
WE WERE RECRUITING BETWEEN 18
MONTHS AND 4-5 YEARS OF AGE AND
OUR MEAN AGE WAS 3.
SO THESE ARE TODDLERS AND YOUNG
PRESCHOOLERS BUT THE
POLYSONNOGRAPHY SHOWED NOT ONLY
DECREASE IN REM SLEEP BUT ALSO
INCREASE IN SLOW VOICE SLEEP,
WHICH LED ONE OF MY FELLOWS TO
PURSUE A COURSE OF NEW RESEARCH
LOOKING AT ANTICOLONERGIC
PATHWAYS IN AUTISM BECAUSE THAT
IS THE CONNECTION BETWEEN THE
DECREASING REM AND THE
INCREASING SLOW WAVE SLEEP.
THE EXCITING THING ABOUT THAT IS
THAT IT OFFERS SOME NEW
TREATMENT TARGETS THAT ARE
WIDELY USED AND GENERALLY
AVAILABLE.
ON THE LEFT PANEL YOU WHAT SEE
IS THE LARGE GROUP OF CHILDREN
WITH AUTISM WHO HAD A SLEEP
STUDY DONE.
THEIR MEAN IS HERE.
AS YOU CAN SEE IN THE TYPICAL
AND IN THE D DAY -- EXCUSE ME,
CHILDREN WITH DEVELOPMENTAL
DELAYS, THEIR MEAN IS ABOUT 24%.
THAT'S AN AGREEMENT GENERAL
AGREEMENT WITH THE MONTGOMERY
DOWNS MEANS OF 22% FOR THE AGE
GROUP.
OUR MEAN WAS ABOUT 15%, WITH
MANY OF THE CHILDREN SPENDING
LESS THAN 10% OF THE NIGHT IN
REM SLEEP.
WHAT I DIDN'T HAVE ROOM FOR WAS
TO SHOW YOU THE VERY UNUSUAL
PATTERN AND THAT IS THAT THE
CHILDREN WOULD GO INTO REM SLEEP
BUT THEN THEY BOUNCE IMMEDIATELY
BACK OUT.
SO IT WAS SOMETHING ABOUT THE
CONTINUATION OF REM THAT WAS
PROBLEM MAT NICK THIS GROUP OF
PATIENTS.
-- PROBLEMATIC IN THIS GROUP OF
PATIENTS.
SO A DOSE FINDING STUDY WAS
DEFINED IN PREPARATION TO DO A
LARGER PLACEBO-CONTROLLED TRIAL
LOOKING AT ERA SEPTEMBER USED IN
ALZHEIMER'S DISEASE AND WAS
REPORTD TO HAVE A SIDE EFFECT OF
INCREASING REALM SLEEP.
IN VERY LOW DOSES IT HAD LOW
REPORTED SIGH EFFECTS AND IN OUR
STUDY THE TWO BEST EXAMPLES ARE
HERE TO THE BOTTOM WHERE A CHILD
HAD VIRTUALLY NO REM SLEEP AND
ACTUALLY NORMALIZED WITH 2.5
MILLIGRAMS.
WE DID NOT LOOK AT BEHAVIORAL
EFFECTS IN HERE AND THAT WOULD
OBVIOUSLY BE THE MILLION DOLLAR
QUESTION.
SO WHAT?
DOES IT MAKE A DIFFERENCE IF YOU
CHANGE THE AMOUNT OF REM SLEEP
SNAP THAT REQUIRES A VERY LARGE
POPULATION OF PLACEBO-CONTROLLED
TRIAL AND WE ARE LOOKING
TOGETHER AT WAYS THAT THIS COULD
BE DONE IN THE MOST EFFICIENTLY
AND EFFECTIVELY.
[OFF MIC]
>> I COULDN'T HEAR.
I'M SORRY.
>> [OFF MIC]
>> WE DID NOT CONSIDER GENETIC
ABNORMALITIES.
WE ONLY MADE OUR DIAGNOSIS BASED
ON BEHAVIORAL PATTERNS.
SO IF A CHILD CAME IN TO US, DID
NOT HAVE SYMPTOMS OF AUTISM BUT
HAD I WANT ELECTUAL DEFICITS,
DEVELOPMENTAL DELAY, THEY COULD
BE IN THAT DD GROUP AND THEN
ONLY SENT OFF THEIR GENES.
WE WOULD FIND OUT IF THEY HAD
FRAGILE X OR NOT.
WE WEREN'T TAKING KIDS ALREADY
KNOWN TO HAVE GENETIC
ABNORMALITIES.
AT LEAST NOT IN OUR AUTISM
GROUP.
SO THE FINAL CATEGORY WAS A
CO-OCCURRING CONDITION.
AND AGAIN, WE DON'T HAVE TIME TO
DELVE INTO ANY OF THESE BUT THEY
ARE AREAS OF GREAT INTEREST
BECAUSE IT'S THOUGHT THAT MAYBE
THAT WOULD BE THAT SUBGROUP THAT
WOULD TAKE US INTO THE LARGER
COHORT OF AUTISM AND GIVE US A
WINDOW INTO WHAT IS HAPPENING
FOR THE LARGER GROUP OF
INDIVIDUALS.
A NUMBER OF THINGS HAVE HAPPENED
IN JUST THE PAST YEAR THAT HAD
TREMENDOUS IMPACT ON PATIENTS
WITH AUTISM SPECTRUM DISORDERS
WHO HAVE CO-OCCURRING
CONDITIONS.
TIM WAS THE PIONEER IN REPORTING
THE GI DISEASE WAS A MAJOR
PROBLEM FOR INDIVIDUALS WITH
AUTISM, PARTICULARLY GASTRIC
REFLUX, IN WHICH THE NONEVENTUAL
AND INABILITY TO COMMUNICATE WAS
HAVING THESE CHILDREN BEIN
EXTREME PAIN AND NOBODY KNEW.
THEY DEVELOPED ODD BEHAVIORS OF
THROWING THEMSELVES ACROSS THE
TABLE OR JUST INCREASED
AGGRESSION AND EATABILITY AND
WHEN THEY WERE SCOPED THEY WERE
FOUND TO HAVE VERY SEVERE
ESOPHYETIS.
GREAT DEAL OF INTEREST IN
IMLODGE IG DISORDERS.
SLEEP DISORDERS, EPILEPSY AS
WELL AS ADHD, ANXIETY AND OTHER
PSYCHIATRIST DISORDERS.
ONE OF THE THINGS WE NEED TO
UNDERSTAND BETTER IS HOW TO
TREAT INDIVIDUALS WHO HAVE
AUTISM AND ALSO HAVE ADHD OR
ALSO HAVE DIAGNOSISSABLE ANXIETY
DISORDER, BECAUSE THE FOLKLORE
IS THAT THEY ARE GOING TO HAVE
AN IDIOSYNCRATIC RESPONSE TO THE
MEDICATION SO YOU SHOULDN'T TRY
IT.
THOSE IDIOSYNCRATIC REACTIONS
ARE VERY DRAMATIC.
BUT THEY ARE NOT THE NORM.
SO, BEING ABLE TO PAY ATTENTION
TO WHICH INDIVIDUALS HAVE
PROBLEMS WITH SIDE EFFECTS AND
WHICH DON'T, WILL BE HELPFUL.
ONE OF THE THINGS WE ARE WORKING
WITH IS NOT ONLY CONTINUING TO
COLLABORATIONS WITH INDIVIDUALS
WITH ACADEMIC CENTERS BUT TRYING
TO FORM A VERY CLOSE
RELATIONSHIP WITH THE AUTISM
TREATMENT NETWORK WHICH IS
SUPPORTED BY AUTISM SPEAKS, AND
IS NOW HAS 18 CENTERS ACROSS THE
UNITED STATES, BOTH GENERAL
PEDIATRIC AND CLINICAL PRACTICES
AS WELL AS ACADEMIC CENTERS.
AND THEY RECRUIT 100 INDIVIDUALS
A YEAR WITH AUTISM SPECTRUM
DISORDERS AND THEN FOLLOW THAT
COHORT FORWARD IN THAT MEDICAL
HOME.
SO IT PROVIDES A WONDERFUL,
WONDERFUL OPPORTUNITY TO DO
PROSPECTIVE LONGITUDINAL
RESEARCH, SORT OF AS AN ADD ON
TO THEIR CLINICAL EFFORTS.
AND THAT'S WHAT I HAVE FOR
TODAY.
THANK YOU.
[APPLAUSE]
>> WE HAVE GOTTEN INFORMATION
FROM THE VIDEO CAST FOLKS THAT
WE CAN KEEP IT GOING A LITTLE
PAST 11:30.
SO WE DO HAVE TIME FOR A COUPLE
OF QUESTIONS BEFORE WE MOVE TO
THE NEXT SPEAKER.
SO IF FOLKS WANT TO -- IS THERE
A MICROPHONE?
THAT WE CAN USE?
OR IF YOU CAN REPEAT THE
QUESTION.
>> [OFF MIC]
>> SO THAT WAS A GREAT QUESTION
ABOUT THE USE OF MULTIPLE
MEDICATIONS, WHICH IS THE NORM,
AND DOING THAT IN A MUCH MORE
TARGETED WAY THINKING ABOUT
THOSE SYMPTOMS, ADHD, SLEEP
PROBLEMS, ANXIETY PROX.
RECOGNIZING IF YOU MAX OUT THE
DOSAGES IT COULD BE PROBLEMATIC
AND I THINK THAT KIND OF
RESEARCH IS ABSOLUTELY
INDICATED.
IT'S ANOTHER PLACE THE ATM
PERHAPS SOME OF THE ACE NETWORK
WOULD BE ABLE TO TAKE A LEAD.
>> A QUICK QUESTION REGARDING
THE IMMUNE SYSTEM.
I WOULD LIKE TO HEAR YOUR
PERSPECTIVE REGARDING THE CORE
IMMUNOLOGICAL PROBLEMS.
DO YOU THINK THIS IS JUST CNS?
JUST AFFECTING GOT ROW
INTESTINAL, INFLAMMATION,
ASTHMA?
DO YOU THINK THIS IS DEEP IN THE
CORE OR JUST INDIVIDUALLY-BASED
CASE?
>> THANK YOU.
I THINK THAT THE IMMUNOLOGIC
DEFICITS ARE UNKNOWN OR THEY
LIE.
I AM VERY SUSPICIOUS ANDIN FACT
WE ARE DOING THE RESEARCH TO TRY
TO DETERMINE WHETHER OR NOT FOR
SOME INDIVIDUALS, PARTICULARLY
THOSE WITH REGRESSIVE PATTERNS
OF ONSET, THAT IMMUNOLOGIC
ABNORMALITIES MIGHT BE THE BASIS
FOR THEIR SYMPTOMATOLOGY.
WE KNOW THAT NOT ONLY IS THERE
VERY TIGHT RELATIONSHIP BETWEEN
THE NUR LOGIC SYMPTOM AND THE
IMMUNE SIMPLE, BUT MANY OF THE
CYTOKINES AND CHEMOKINES CAN ACT
AS NEUROTRANSMITTERS AND THEY
SHIFT IN THOSE POPULATIONS OF
B-CELLS AND T-CELLS THAT HAVE
TREMENDOUS EFFECTS ON SOCIAL
INTERACTIONS AMONG ADULTS WHO
ARE BEING TREATED WITH
IMMUNOLOGIC AGENTS.
SO IT'S ONE OF THOSE AREAS THAT
IS UNDER ACTIVE INVESTIGATION.
I HAD A LINE ABOUT IT AND
INCLUDED THE MOST RECENT STUDIES
TO DATE.
I THINK IT'S BEEN A LITTLE
DISAPPOINTING BECAUSE THERE
AREN'T CLEAR MECHANISM BUT I'M
HOPING IT WILL GO THE WAY
FRAGILE X DID.
THAT WE WILL START TO LAY ALL
THIS OUT AND AS YOU KNOW, MODERN
TECHNIQUES ALLOW US TO LOOK AT
THE ACTUAL GENES THAT WOULD
UNDERLIE THOSE SEEMINGLY
DESPERATE PATHWAYINGS.
>> SO I THINK WE'LL MOVE TO THE
NEXT SPEAKER.
DR. REBECCA LANDA IS AN
ASSOCIATE PROFESSOR OF PSYCHE
INDUSTRY AT JOHN'S HOPKINS
UNIVERSITY SCHOOL OF
PREPONDERANCE OF THE
EVIDENCE -- PSYCHIATRY.
AND DIRECTS THE CENTER FOR
AUTISM AND RELATED DISORDERS AT
KENNEDY KREIGER INSTITUTE WHICH
OFFERS A UNIQUE
INTERDISCIPLINARY APPROACH TO
SERVING CHILDREN WITH AUTISM
SPECTRUM DISORDERS AND THEIR
FAMILIES.
THE CENTER COMBINES EDUCATIONAL,
CLINICALLING, DIAGNOSTIC,
OUTPATIENT AND OUTREACH PROGRAMS
TO CREATE TREATMENT THAT IS
TAILORED TO THE PARTICULAR NEEDS
OF INDIVIDUAL CHILDREN AND THEIR
FAMILIES.
DR. LANDA RECEIVED HER BA IN
SPEECH PATHOLOGY AND AUDIOLOGY
FROM TOWSON STATE UNIVERSITY AND
HER Ph.D. AT THE UNIVERSITY OF
WASHINGTON.
IN HER RESEARCH, SHE EXPLORES
THE CAUSES, INDICATORS AND
TREATMENTS OF AUTISM.
SHE IS A PIONEER AND RESEARCHER.
ONE OF HER STUDIES WAS THE FIRST
TO FOLLOW INFANTS AT RISK FOR
AUTISM THROUGH THEIR FIRST YEAR
OF LIFE AND BEYOND IN ORDER TO
EXAMINE THE NEUROBIOLOGICAL AND
DEVELOPMENTAL PATTERNS IN THESE
CHILDREN.
FINDINGS FROM HER SUDDIES WILL
HELP TO IMPROVE THE EARLY
DETECTION AND INSTRUCTION
ALTECHNIQUE USED TO HELP VERY
YOUNG CHILDREN WITH AUTISM AND
RELATED DISORDERS.
DR. LANDA.
>> IT'S A JOY TO BE HERE.
I'M CONVINCED THAT IN ORDER TO
MAKE THE OUTCOMES AS UP-TO-DATE
AS POSSIBLE, WE HAVE TO START
INTERVENTION AS EARLY IN LIFE AS
POSSIBLE.
I WANT TO THANK THE CHILDREN AND
FAMILIES WHO PARTICIPATED IN MY
RESEARCH, MY WONDERFUL SPOUSE,
THE NATIONAL INSTITUTES OF
HEALTH WHO FUNDED SO MUCH OF MY
WORK, THAT THOUGHT ME SO MUCH
ABOUT HOW TO HELP CHILDREN WITH
AUTISM AND FAMILIES.
HERSA AND THE KREIGER
FOUNDATION.
SO, THIS IS A LITTLE BOY WHO
CAME TO ME FROM THE MAILED EASE
WHEN HE WAS JUST AFTER HIS FIRST
BIRTHDAY.
WE DID DIAGNOSE HIM WITH AUTISM
AND THE FAMILY, THE MOTHER MOVED
TO THE U.S. TO PUT THIS LITTLE
DARLING IN OUR ONE-YEAR-OLD
TREATMENT STUDY WHICH I WILL
MENTION TO YOU TODAY.
AND NOW HE LIVES IN CHINA AND
THIS IS HIM LOOKING OUT OF HIS
APARTMENT WINDOW.
AND THE QUESTION IS, FOR EVERY
CHILD WHO COMES TO US WITH
CONCERNS ABOUT AUTISM, WHAT
PLACE WILL THEY HAVE IN THE
WORLD?
AND WE REALLY HAVE TO DO OUR
VERY BEST TO MAKE THEIR PLACE
ONE OF GREAT FULFILLMENT.
EARLY INTERVENTION IS AN
INVESTMENT OF A LIFETIME.
DURINGIN FANCY, THE PATTERNS ARE
LAID DOWN FOR THE PARENT
EXPECTANCIES OF THEIR CHILDREN.
THE CHILD EXPECTANCIES OF
OTHERS, THE CHILD'S EXPECTANCIES
OF THEMSELVES.
CHILDREN LEARN VERY QUICKLY TO
FORM IDEAS AS PASSIVE AS THEY
MAY BE, ABOUT WHAT THEY ARE
CAPABLE OF.
THEY BUY INTO THEIR OWN
DEFICITS.
AND THIS DYNAMIC OF A PARENT
CHILD INTERACTION IS LAID DOWN
VERY EARLY IN LIFE.
AND FAMILY FUNCTIONING
ESTABLISHES ITSELF IN A CERTAIN
WAY OF BEING.
AND SO, INDEED, AS THIS PICTURE
PORTRAYS, THE FUTURE IS IN OUR
HANDS IN THESE BABIES.
SO THE OBJECTIVES OF EARLY
INTERVENTION IS TO ALL RIGHT THE
SPIRALING EFFECTS OF A CHILD'S
DEVELOPMENTAL CHALLENGES IN THE
CHILD AND FAMILY WHO CAPITALIZE
ON NEUROPLASTICITIES WHICH
PERHAPS IS MOST MALLEABLE EARLY
IN LIFE AND TO NOURISH THE BRAIN
THROUGH IMPROVING HEALTHY
CONNECTIVITY.
WE WANT TO IMPROVE THE CHILD'S
FUNCTIONING IMMEDIATELY.
WHEN A PARENT BRINGS THEIR CHILD
TO ME FOR AN ASSESSMENT, I TEACH
THAT CHILD SOMETHING THAT DAY IN
THAT SESSION.
AND 100% OF THE TIME, THE
PATIENTS SAY TO ME, I DIDN'T
BELIEVE THIS IS POSSIBLE IN MY
CHILD.
THEY WALK OUT THAT DOOR WITH A
NEW HOPE AND A NEW WAY OF
UNDERSTANDING THEIR CHILD.
AND THEN EARLY INTERVENTION
BUILDS ON THIS.
AND WE WANT TO GIVE CHILDREN THE
TOOLS TO ENABLE THEM TO DRAW TO
THEMSELVES THE KINDS OF LEARNING
OPPORTUNITIES THAT ARE GOING TO
ALTER THEIR BRAIN DEVELOPMENT
AND WE WANT TO GIVE PARENTS GOOD
SOLID INFORMATION.
HOW CAN WE DIRECT THEM TO FILL
THEIR DAY AND THEIR SEARCHES IN
WAYS THAT WILL BE PRODUCTIVE AND
LEAD TO AN INCREASED CONFIDENCE
IN THEMSELVES AS PARENTS TO
BECOME CONFIDENT AND TAKE A
MAJOR ROLE IN THEIR CHILD'S
DEVELOPMENT.
SO, WHAT WE REALLY WANT IN OUR
INTERVENTION IS TO CAPITALIZE ON
WHAT ASPECTS OF BRAIN
DEVELOPMENT ARE MALLEABLE AND
WHATEVER CHANGES WE INSTITUTE IN
THIS FAMILY AND IN THE CHILD
DURING INTERVENTION, WE WANT
THAT TO BE SUSTAINED.
I'M NOT INTERESTED IN HAVING
PARENTS PARTICIPATE IN MY
TREATMENT STUDIES TO SHOW AN
OUTCOME OF IMPROVEMENT AND NOT
HAVE IT STICK.
IT HAS TO STAY.
THE INTERVENTION HAS TO
PENETRATE THE PARENT'S EVERY DAY
PRACTICE.
AND THE CHILD'S EVERY DAY
FUNCTIONING.
THE TREATMENT ALSO HAS TO BE
FEASIBLE.
WHAT GOD IS A TREATMENT IF A
FAMILY WILL HANG WITH IF FOR
THREE-FOUR MONTHS AND GIVE YOU A
BEAUTIFUL OUTCOME IF IT'S NOT
USEABLE IN THEIR EVERYDAY LIFE
OR IN THE PUBLIC SYSTEM.
AND IS THE TREATMENT GOING TO BE
SCALABLE?
SO I WANT TO SHOW YOU A BUSY
SLIDE BUT THIS IS REALLY WHAT I
BELIEVE.
AND I UNDERSTAND AND I'M SO
BLESSED TO HAVE AN INTERACTION
AT HOPKINS AND KENNEDY KREIGER
WITH DR. CARLOS PARDONO AND MARY
BLUE AND OTHER BEAUTIFUL
DEVELOPMENT BIOLOGISTS AND
NEUROIMINOLOGYISTS AND
NEUROLOGISTS.
YES, AUTISM DISEASE ARE A VITAL
PART OF THE EMERGENCE OF AUTISM
BUT HIGHLY LIKELY THAT OTHER
FACTORS ARE CONTRIBUTING TO THE
UNFOLDING OF THIS PHENOTYPE IN
TERMS OF NEUROPEPTIDES AND BRAIN
GROWTH FACTORS AND SEROTONIN.
ALL OF WHICH THESE
NEUROBIOLOGICAL FACTORS ARE
VERY, VERY MUCH SHAPED IN THEIR
UNFOLDING BY EXPERIENCE.
AND SO THESE THINGS GIVE RISE TO
THE BEHAVIORAL PHENOTYPE, WHICH
THEN GIVES RISE OR CONTRIBUTES
TO THE KINDS OF SELF GENERATED
EXPERIENCES THESE CHILDREN HAVE
AND THESE EXPERIENCES GO SLOW
BACK ON TO THE NATURE OF THIS
BEHAVIORAL PHENOTYPE AND
ACTUALLY INFLUENCE THE
NEUROBIOLOGY.
SO, IN ORDER TO ACHIEVE THE
OBJECTIVE THAT IS WE HAVE FOR
EARLY INTERVENTION ON A PREVIOUS
SLIDE, WE REALLY WANT TO ALTER
EARLY EXPERIENCES THROUGH
STRATEGICALLY DESIGNED EARLY
INTERVENTION BOTH THROUGH
THERAPISTS MEDIATED AND AIRPORT
MEDIATED INTERVENTIONS.
AS HILLARY CLINTON SAID, IT
TAKES A VILLAGE.
AND -- AND PARENT MEDIATED
INTERVENTION.
ONE OF THE THINGS I LEARNED
THROUGH MY EARLY DETECTION AND
MY EARLY INTERVENTION WORK IS
THAT INTERVENTION IS NOURISHMENT
FOR THE BRAIN.
WE OFTEN THINK ABOUT NOURISHING
THE BRAIN THROUGH FOOD OR MAYBE
EVEN THROUGH BIOLOGICAL
INTERVENTIONS, VITAMINS OR DIET.
BUT REALLY, EXPERIENCE.
MUCH NOURISHMENT TO THE BRAIN AS
FOOD AND OTHER KINDS OF AGENTS
THAT COME INTO THE BRAIN ORALLY.
SO, THIS IS JUST A PICTURE FROM
AMY'S WORK WITH THE STICK
EMITTENS WHERE SHE HAD A
THREE-MONTH-OLD INFANTS WHO ARE
NOT ABLE TO REACH AND GRASP.
PUT VELCRO MITTENS ON THEM AND
THESE VELCRO TOYS IN FRONT OF
THEM AND THOSE BABIES ACTUALLY
GRASP THE TOY WITH THEIR MITTENS
AND COULD EXPLORE THEM AND THIS
ALTERED IN THE SHORT TERP, THESE
CHILDREN'S SOCIAL COGNITION AND
MOTOR DEVELOPMENT.
AND SO, VERY MUCH ASTUTE OF THE
NOTION OF EMBODIED COGNITION.
SO THE NATURE OF THINGS WE PUT
IN CHILDREN'S HANDS AND THROUGH
THEIR EYES AND THROUGH THEIR
BODY, EXPERIENCES AND THEIR
EARS, ARE GOING TO ALTER THE WAY
THAT THEY LEARN HOW TO LEARN
ABOUT THE WORLD.
SO, I'M VERY INTERESTED IN
BUILDING NETWORKS OF NAMING AND
ENGAGEMENT IN MY EARLY
INTERVENTION PROGRAMS.
SO AUTISM IS INDEED A DISORDER
OF DISCONNECTIVITY, THEN WE HAVE
TO DO EVERYTHING WE CAN TO BE
ENABLERS OF A CONNECTED BRAIN.
SO WE HAVE TO LAY DOWN THE
FOUNDATIONS OF MEANING.
SO FOR PARENTS, THE CURRICULUM
THAT WE HAVE FOR THEM IS
UNDERSTANDING THEIR CHILD'S
BEHAVIOR AND DEVELOPMENTAL
LEVEL, THEY HAVE TO LEARN
ANOTHER LANGUAGE AS THEY WATCH
THEIR CHILD.
AND WE TEACH THEM HOW TO DO THIS
FROM THE VERY FIRST DAY OF THE
INTERVENTION.
WE HAVE VERY SPECIFIC WAYS OF
DOING THIS.
THEN WE TEACH THEM CERTAIN
STRATEGIES FOR INTERACTING WITH
THEIR CHILD.
AND THE WAY WE APPROACH THIS
TEACHING IS VERY MUCH ADULT
LEARNING MODELS.
WE DON'T JUST DO THIS IN HAVE A
ROADABLE HOMEWORK SHEET.
THIS IS A MULTIMODAL PROCESS FOR
THEM.
AND WE ALSO TEACH THEM TO
REENGINEER THEIR HOME
ENVIRONMENT TO, HOW TO PICK THE
RIGHT TOYS.
AFTER WE TEACH PARENTS, THEY SAY
ACTUALLY GIVE AWAY THE TOYS THEY
ALREADY BOUGHT.
BECAUSE PARENTS BUY THE WRONG
TOYS FOR THEIR CHILDREN AND WE
ALL DID TOO.
BUT BECAUSE OUR CHILDREN HAVE
SUCH PROFOUNDLY CAPABLE BRAINS,
THEY MADE THE BEST OF THE TOYS
WE BOUGHT THEM.
AND THE BOOK SHARING STRATEGY,
HOW TO PUT THESE THINGS INTO THE
ACTIVITIES OF DAILY LIVING, PUT
CHILDREN IN THE CORE VOCABULARY
AND ACTIONS SCHEMA THROUGH JOINT
ACTION ROUTINES AND BUILDING
EVENT REPRESENTATIONS ON TO
WHICH WE MAP LANGUAGE AND WE
VERY MUCH USE ACTIVITIES BASED
LEARNING.
THESE CHILDREN, EVERYTHING ABOUT
THIS IS TEACHING THEM TO BE THE
AGENTS OF CHANGE IN THEIR LIVES.
AND SO WE USE A CONTINUUM OF
ADULT STRUCTURE -- MY STUDIES
HAVE TAUGHT ME THAT YOUR, AS AN
ADULT, ROLE IN THESE CHILD'S
LEARNING PROCESS HAS TO BE DOSED
VERY CAREFULLY.
YOU HAVE TO BE VERY CONSCIOUS
ABOUT HOW MUCH YOU ARE ACTUALLY
THE ONE STRUCTURING THE INPUT.
BECAUSE THEY BECOME VERY
DEPENDENT ON THAT STRUCTURE VERY
QUICKLY.
NOW, I'M GOING SHARE TWO SETS OF
FINDINGS WITH YOU.
I'M GOING TO GO FAST.
SO, THIS IS A ONE-YEAR-OLD
TREATMENT STUDY.
NOW WE HAVE ABOUT DOUBLED THIS
SAMPLE SIZE BUT THIS IS A PAPER
THAT IS UNDER REVIEW.
IT'S BEEN UNDER REVIEW FOR A
WHILE.
AND SO THESE BABIES CAME IN MOST
OF THEM HAD AUTISM.
THERE WERE A COUPLE WHO WERE AT
RISK FOR AUTISM AT MEAN AGE 16
MONTHS AND THEY WERE RANDOMIZED
INTO WHAT WE CALL ACHIEVEMENT
FOR LEARNERS OR APPARENT
EDUCATION CLASS.
IT'S ROCKET SCIENCE FOR PARENT
EDUCATION.
I CAN'T GO INTO IT HERE.
BUT IT'S NEAT.
AND THESE KIDS MET CRITERIA FOR
AUTISM OR ASD.
THE PARENT EDUCATION GROUP WAS A
LITTLE BIT MORE MILDLY EFFECTED
JUST BY CHANCE THAN THE CHILDREN
WHO WERE IN THE FULL
EXPERIMENTAL TREATMENT.
AND THOSE IS JUST VERY QUICKLY
TO SHOW YOU THAT THESE ARE AGE
EQUIVALENCY SCORES -- NO, THE
NUMBER OF CHILDREN WHO MET OUR
CRITERIA FOR IMPROVEMENT ON THE
RECEPTIVE -- VISUAL RECEPTIVE,
RECEPTIVE LANGUAGE AND EXPRESS
ITCH LANGUAGE, FUNCTIONAL PLAY
AND A PARENT CHILD PLAY SAMPLE,
AND A PARENT'S USE OF THESE
CHILD COMMUNICATION ENHANCING
STRATEGIES.
AND YOU WHAT SEE IN THE DARK
LINE IS THE NUMBER OF CHILDREN
OR THE NUMBER OF GAMES, I'M
SORRY.
NUMBER OF CHILDREN WHO MAKE THE
GAINS -- PERCENTAGE -- GOSH!
A NUMBER OF THE CHILDREN WHO
MAKE THE GAINS IN EACH
CONDITION.
IT'S OVERWHELMINGLY IN THE
ACHIEVEMENT FOR THE LEARNED
CONDITION.
ONE OF THE BIGGEST THINGS WE
FOUND WAS THAT ALL THE CHILDREN
WHO WERE IN THE PARENT EDUCATION
GROUP FAILED TO MOVE INTO THE
LEVEL OF GAIN THAT WE HAD SET
FOR OUR CRITERIA FOR ACTUAL
AMOUNT OF GAIN.
BECAUSE OF THE TIME I'M NOT
DOING A GOOD JOB OF EXPLAINING
THIS TO YOU.
THE OTHER THING WE FOUND WAS ON
THE Y AXIS IS THE AMOUNT OF
PARENT CHANGE AND ONLY THE
PARENTS WHO WERE IN THE
ACHIEVEMENTS FOR LITTLE LEARNERS
CONDITION, MADE THE KINDS OF
GAINS THAT WE WANTED.
THE ARROWS HERE ARE PARENTS WHO
ALTERNATORRED COMING TO THE
TRAINING AND SO WHAT WE FOUND
WAS THAT THERE HAS TO BE A
CERTAIN DOSAGE OF PARENT
EXPOSURE TO THE INTERVENTION TO
MAKE A GAIN.
NOW, WE ALSO TAUGHT PARENTS A
VARIETY OF TYPES OF ROUTINES
WITH THEIR CHILDREN AND I WANT
TO SHOW YOU THIS DAD WHO MADE
JUST A MAGNIFICENT GAIN IN THE
USE OF THESE STRATEGIES I NEED
SOUND.
HOLD ON A SEC.
UNFORTUNATELY IT'S NOT COMING UP
YET.
SO, BASICALLY, WHAT IS HAPPENING
HERE IS THAT THIS DAD EVERYTHING
PLAYED THIS MORNING ON THIS HOOK
UP.
BUT THE GREMLINS ARE HERE.
SO THIS LITTLE COMPUTER IS GOING
IN THE TRASH CAN TONIGHT.
IT DOES THIS TO ME AND IT WOULD
DO IT FOR YOU TODAY.
ANYBODY WANT THIS COMPUTER?
I'LL HAND IT TO YOU ON THE WAY
OUT TODAY.
ALTHOUGH I WOULDN'T BE DOING YOU
ANY FAVOR AT ALL.
COULD I TAKE A COUPLE OF
QUESTIONS WHILE WE ARE WAITING
FOR THIS TO BOOT BACK UP?
>> [OFF MIC]
>> BEAUTIFUL QUESTION.
SO THE QUESTION IS, IS
SOCIETY -- IN SOCIETIES WHERE
FAMILIES MULTIPLE GENERATIONS
ARE ENGAGING WITH THE CHILDREN,
COULD THERE BE A CHANCE OF THIS
REDUCING RISK FOR AUTISM?
I THINK THAT'S A VERY INTRIGUING
QUESTION.
REALLY CHILDREN WITH AUTISM, WE
KNOW FROM THE STUDIES I HAVE
PUBLISHED, AUTISM IS AN EMERGENT
DISORDER.
AT 6 MONTHS OF AGE, EVERYTHING
SEEMS TO BE GENERALLY OKAY.
OVER TIME, THINGS BEGIN TO
DETERIORATE SO BY THE SECOND
BIRTHDAY THE CHILD FADED INTO
THIS AREA OF AUTISM.
SO HOW MUCH OF THAT IS
PREVENTIBLE IT'S VERY RICH
SOCIAL ENGAGE FROM THE A VERY
EARLY POINT IN LIFE HAS
PROTECTIVE AFFECTS.
THANK YOU FOR THAT QUESTION >>
[OFF MIC]
>> HOW MANY PEOPLE HAVE A FAMILY
MEMBER WITH AUTISM HERE?
THANK YOU.
>> [OFF MIC]
>> SO THE QUESTION IS WHAT DO WE
DO ABOUT DENIAL?
I'M IN THE PROCESS OF TRYING TO
DEAL WITH THIS MYSELF.
AND THE PLACE WHERE I'M PLAYING
THE -- RIGHT NOW, IS MAYBE
TALKING TO FAMILIES MORE ABOUT
COMMUNICATION ISSUES.
AND TRYING TO FOCUS ON THOSE
COMMUNICATION ISSUES AND
BEHAVIORAL ISSUES AND GENTLY
BUILDING THAT RELATIONSHIP OF
TRUST.
AND HELPING THE FAMILIES TO HELP
ME UNDERSTAND THEIR CHILD.
AND MAYBE NOT TRYING TO JAM A
DIAGNOSIS OF AUTISM SO QUICKLY
ON A FAMILY MEMBER.
>> THIS IS A PROCESS.
UNFOLDING PROCESS.
AND I THINK THAT THIS IS NOT
UNIQUE TO AUTISM.
THIS IS ALSO THERE IN OTHER
MEDICAL DISORDERS.
>>  [OFF MIC]
>> WHAT CAN WE DO TO HELP OUR
OLDER CHILDREN?
I HAVE A 16-YEAR-OLD?
WHAT KINDS OF THINGS CAN WE DO?
>> THE QUESTION IS, WHAT DO WE
DO ABOUT OLDER CHILDREN WITH
AUTISM?
THE NUMBER 1 PIECE OF ADVICE I
HAVE IS, UNDERSTAND THE BEST OF
YOUR ABILITY YOUR CHILD'S OWN
UNIQUE NICHE.
SO TRYING TO UNDERSTAND WHAT
YOUR CHILD LOVES, AND WHAT YOUR
CHILD NEEDS.
AND IT IS REALLY PUSHING YOUR
CHILD TO THE EDGE OF THEIR
ABILITIES, IT'S VERY MUCH A
NEGOTIATION.
AND SO BECAUSE WE CAN'T ALWAYS
GO AT THE SPEED OF LIGHT LIKE WE
ARE USED TO MOVING THROUGH LIFE,
AT LEAST IN OUR CULTURE HERE.
BUT ALWAYS KNOWING THAT YOU ARE
GOING TO MAKE ADVANCES.
AND HELPING TO ENCOURAGE A CHILD
WITH THAT AND SOMETIMES IN ALL
ASPECTS EVER PARENTHOOD, WE KNOW
THAT WE DO HAVE TO PUSH.
SO WE CAN'T LET IT JUST BE THAT
THE CHILD STAYS IN THAT BED.
YOU KNOW?
AND SO THERE ALWAYS HAS TO BE A
REWARD AT THE END OF THE TUNNEL
AND HOW QUICKLY THOSE REWARDS
COME AND THE NATURE OF THOSE
REWARDS WILL BE ALWAYS
INDIVIDUALIZED.
>> [OFF MIC]
>> THE EFFECTS OR INDICATIONS OF
AUTISM DO NOT SURFACE UNTIL A
CHILD IS 5 OR 6?
>> SO HOW CAN AUTISM EMERGE?
HERE IS THE THING ABOUT AUTISM,
AUTISMIN LIKE WHAT WE GET LED TO
BELIEVE, IF WE GET LED TO
BELIEVE BY RELEASE OF DIAGNOSTIC
AND STATISTICAL MANUALS THAT
AUTISM IS OR ISN'T THERE, IT'S
NOT TRUE.
AUTISM IS A SPECTRUM DISORDER.
AND WHERE DO WE DRAW THAT LINE
THAT YOU HAVE THE DISORDER OR
YOU DON'T.
AND SOMETIMES THERE IS NUMEROUS
FACTORS THAT INFLUENCE WHETHER A
CHILD FALLS INTO IMPAIRMENT OR
NOT.
SO SOME CHILDREN MAY BE SHOWING
THOSE SHADES OF SOCIAL
DIFFERENCES AND COMMUNICATION
DIFFERENCES AND SENSORY ISSUES,
AND UNTIL THEY GET INTO
ELEMENTARY SCHOOL OR EVEN A
LITTLE BIT PAST THAT AND THEN
BECAUSE OF NEUROBIOLOGICAL
FACTORS OR SOCIAL FACTORS, BEGIN
TO MANIFEST MORE FULLY AND THEY
BECOME MORE EASILY DIAGNOSED.
AND THEY ARE GOING TO BE THE
CHILDREN WHO LINGER IN THE WINGS
FOREVER.
DO THEY OR DON'T THEY?
RIGHT NOW MY SON IS WORKING WITH
NASA AND BECAUSE HE GREW UP WITH
AUTISM, HIGH UNDERSTANDS THESE
NUANCES THAT HAVE LEARNED TO BE
VERY EFFECTIVELY WORK WITH A LOT
OF THE ENGINEERS HE WORKS WITH.
AND I FEEL VERY GRATEFUL THAT HE
IS GROWN UP TO APPRECIATE THESE
INDIVIDUAL DIFFERENCES.
SO IT'S ALL ABOUT HELPING EVERY
CHILD BECOME ALL THAT THEY CAN.
WITHOUT WORRYING SO MUCH ABOUT
DIAGNOSIS.
YES, IN THE BACK?
>> [OFF MIC]
>> -- HOW CAN YOU -- HOW DO YOU
TRANSLATE LATER ON?
SAY YOU DO INTERVENTION WHEN THE
KID IS AGE 2, 3, 4, 5 AND
EVENTUALLY THEY ARE OUT OF YOUR
HANDS.
DOES THE GAME THAT THE PARENTS
ACQUIRED AT THIS POINT ALLOW
THEM TO CONTINUE GROWING UP OR
DO YOU REACH OR IMPROVE WHAT
THEY WOULD WOULD HAVE BEEN DOING
AT THIS AGE, WHAT THEY SHOULD BE
DOING AND THEN WHAT?
>> I CAN ONLY SPEAK TO YOU FROM
MY DATA.
SO, MY STUDY, MY EARLY
INTERVENTION STUDY I DIDN'T GET
TO SHOW YOU TODAY, MY HEART IS
BREAKING SO PLEASE INVITE ME
BACK NEXT YEAR.
AND I REALLY AMTHROWING OUT THIS
COMPUTER TODAY.
FROM OUR DATA, SO IN 2003, WE
STARTED A STUDY.
SO MY ORIGINAL TOL-YEAR-OLDS ARE
NOW 10.
AND -- TWO-YEAR-OLDS ARE NOW 10.
SO THOSE CHILDREN ACTUALLY 2/3
OF THOSE KIDS ARE FUNCTIONING
WITHIN NORMAL LIMITS IN TERMS OF
THEIR COGNITIVE SKILLS AND THEIR
LANGUAGE, EXPRESSIVE LANGUAGE
SKILLS.
THAT'S PHENOMENAL.
AND SO I REALLY THINK THAT WHAT
PLATFORM WERE THEY DOWN OVER THE
COURSE OF SIX MONTHS OF EARLY
INTERVENTION AND BY THE WAY,
THIS IS AN RCT THAT IS
PUBLISHED.
IT WAS PUBLISHED IN JOURNAL OF
CHILD PSYCHOLOGIY AND PSYCHIATRY
ON DECEMBER 8, ELECTRONICALLY
AHEAD OF PRINT.
SO I DO THINK THAT EARLY
INTERVENTION IS ALTERING THE
DEVELOPMENTAL PATHWAY AND CORE
FOR THESE CHILDREN.
I DO THINK THAT THESE WILL BE
SUSTAINABLE PLATFORMS OF CHANGE
FOR THE KIDS.
BUT AFTER THIS EARLY
INTERVENTION THAT LASTS SIX
MONTHS IN MY STUDY, WE CAN'T
JUST STOP TREATING.
WE HAVE TO KEEP TREATING.
BUT THEN WE JUST TREAT THE NEXT
NEEDED THING AND JUST
CONTINUALLY ALLOW THIS CHILD TO
BLOSSOM.
>> SO I WOULD LIKE TO ASK YOU
ABOUT ADULTS WITH THIS.
BECAUSE IT SEEMS WE ALWAYS TALK
ABOUT CHILDREN AND AT SOME POINT
THEY DISAPPEAR.
THEY DON'T BECOME ADULTS.
AND I WOULD LIKE TO HAVE A SENSE
OF YOU KNOW OF THOSE CHILDREN
THAT THEY HAVE BEEN DIAGNOSED
WITH AUTISM, HOW MANY OF THEM,
OR ABOUT WHAT IS THE PERCENTAGE
OF INDIVIDUALS THAT THEY LIVE
INDEPENDENT LIFE AS ADULTS?
>> RIGHT.
SO, WITH MY TREATMENT STUDIES,
MY CHILDREN HAVE REACHED
ADULTHOOD YET.
BUT WE KNOW FROM DEBBIE
FINESBURG THAT THERE IS A
POPULATION OF CHILDREN WITH
AUTISM WHO TURN INTO TEENS, WHO
DO NOT MANIFEST AUTISM TO A
DEGREE THAT WOULD MEET
DIAGNOSTIC CRITERIA.
WE ALSO KNOW THAT AUTISM IS A
VERY COMPLEX DISORDER.
AND THAT WE MAY HAVE INDIVIDUALS
ON THE SPECTRUM WHO GROW TO BE
ADULTS WHO NO LONGER, LET'S SAY,
MEET THE CORE CRITERIA FOR
AUTISM BUT MAY HAVE CO-MORBID
DIFFICULTIES.
INVOLVING ANXIETY OR DEPRESSION
THAT REALLY CURTAIL THEIR
INDEPENDENCE.
SO I THINK THAT WE HAVE TO
ALWAYS THINK ABOUT OUR GROWING
CHILDREN FROM A VERY BODY, MIND,
SPIRIT, KIND OF PERSPECTIVE SO
WE CAN BE VIGILANT FOR THESE
EMERGING PROBLEMS THAT WAS
TALKED ABOUT.
THE SLEEP PROBLEMS.
IRREGULARITIES IN SLEEP AND
EATING, CAN BE SIGNS OF
DEPRESSION OR ANEMIA.
WE JUST WANT TO MAKE SURE THAT
WE OBSERVE OUR CHILDREN AND BE
PROACTIVE IN THEIR OVERALL
HEALTHCARE.
AND ALWAYS AIM -- STARTING TO
PREPARE FEM FOR INDEPENDENT LIFE
WHILE THEY ARE 10, 11 AND 12.
THEY NEED TO BE BUSY IN THE
KITCHEN AND IN THE LAUNDRY ROOM
AND HELPING WITH HOUSEHOLD
CHORES.
I THINK IT'S PROBABLY TOO LATE
FOR ME TO GO BACK TO MY TALK.
BUT THANK YOU FOR YOUR HEROIC
EFFORTS.
>> IF YOU WANT TO SHOW A FEW --
>> A COUPLE OF VIDEOS, I THINK
FOLKS WOULD LOVE TO SEE THEM.
I'LL JUST SHOW YOU A COUPLE OF
LITTLE VIDEOS.
I JUST WANT TO MAKE SURE WE GIVE
A HUGE ROUND OF RECOGNITION FOR
THESE WONDERFUL GENTLEMAN WHO
ARE REALLY MAKING WONDERFUL
THINGS HAPPEN RIGHT HERE.
IF ANY OF I ARE TECHNO WIZARDS,
TELL ME WHAT KIND OF COMPUTER TO
GET?
I AM GOING TO LONDON AND I WANT
TO BE ABLE TO WORK ON THE PLANE.
IN JUNE.
HE IS TALKING TO THIS COMPUTER,
COME ON, GIRL.
YOU KNOW, MY HUSBAND IS AN
EQUINE VETERINARIAN AND DOES
THINGS TO HORSES THEY DON'T LIKE
TO HAVE DONE TO THEM AND TO
PREVENT HIMSELF FROM GETTING
KICKED AND SUCH, HE WILL HAVE
EXACTLY THIS CONVERSATION WITH
THE HORSES.
[LAUGHTER]
HOLD YOUR BREATH, DRUM ROLL.
SO I'M GOING TO SHOW YOU A
COUPLE OF VIDEOS.
I WANT TO SHOW YOU THIS DAD
BECAUSE WHAT HE IS DOING IS SO
FANTASTIC.
DID WE JUST LOSE IT?
THERE WE GO.
LET'S TRY IT.
THERE WE GO.
LET'S SEE WHAT HAPPENS HERE.
NOW THE MAIN THING I WANT YOU TO
NOTICE IS THE SIMPLICITY.
AND WE ADULTS HAVE TO WORK SUPER
HARD AT THIS.
NOW SO, IF YOU WATCH WHAT
OBJECTS THIS DAD TOUCHES, AND
LOOK WHERE HE PUTS THE OBJECTS.
NOW WHAT HE IS SAYING TO HIS SON
SINCE THE AUDIO IS NOT WORKING
RIGHT NOW, IS, "BABY.
FEED BABY."
AND HE IS MAKING THOSE NOISES
AND LOOK HOW HE IS SMILING AND
JUST STAYING SO CLOSE TO HIS
SON.
LOOK HOW LONG HE IS STAYING WITH
THIS BABY.
AND HE IS SAYING, "BABY, FEED
BABY."
THIS SI ISN'T TYPICAL PARENT
BEHAVIOR.
USUALLY PARENTS -- NOW THE CHILD
WILL TOUCH THE BABY'S MOUTH.
THE CHILD IS MAKING A DISCOVERY
ABOUT WHAT SIZE THINGS FIT IN
THAT OPENING BECAUSE THIS CHILD
IS ONE AND HE HAS AUTISM.
THERE IS A LOT ABOUT SAFENESS
AND SIZENESS AND OBJECT
RELATIONSHIPSHIPNESS THAT THIS
CHILD IN THE PROCESS OF
DISCOVERING.
WHAT IS HAPPENING WITH THIS
FATHER AND HIM LINGERING WITH
THIS TOY AND STAYING ENGAGED
WITH THIS CHILD, HAS SO MUCH
POWER IN TERMS OF THE REGULATORS
AND RELATIONSHIPS ABOUT THE
WORLD THAT THIS CHILD IS FORMING
THAT ENABLES HIM TO FORM
CONCEPTS THAT LANGUAGE WILL MAP
ON TO AND THAT SOCIAL COGNITION
WILL GROW OUT OF.
I'M JUST GOING TO SHOW YOU FROM
THE ONE-YEAR-OLDS, AND IT'S GOOD
YOU CAN'T HEAR THIS BECAUSE NONE
OF THE CHILDREN ARE TALKING ANY
WAY BUT THEY ARE CRYING.
AND IT'S UNPLEASANT TO LISTEN
TO.
BUT AT THIS AGE, THESE CHILDREN,
THIS ONE OVER HERE, THIS PINK
DARLING, SHE IS ONE WHO IS 12
MONTHS OLD WHEN SHE ENTERED THE
TREATMENT.
AND SHE DID TOUCH OBJECTS.
SHE HAD AN OLDER SIBLING WITH
AUTISM.
A LOT OF RED FLAGS SHE HAD BUT
WE DIDN'T DIAGNOSE HER.
THIS CHILD HERE THAT YOU CAN'T
SEE CRIED 24-7 AND THE HOUSE WAS
FALLING APART.
THIS ONE, WOULD HOLD AN OBJECT
IF HER MOTHER PUT IT IN HER
HAND.
SHE WAS ABOUT 17 MONTHS OLD.
YOU CAN SEE HER LOW TONE.
SHE HAD NO WORDS.
SHE DIDN'T HAVE ANY PLAYING
SKILLS.
AND SHE COULDN'T WALK YET.
HER FATHER THOUGHT THAT SHE
SHOULD BE INSTITUTIONALIZED.
HE DIDN'T WANT TO DO THAT BUT HE
THOUGHT THAT WAS HER FUTURE.
I WISH YOU COULD HEAR THIS
BECAUSE THE KIDS ARE TALKING
NOW.
THIS IS ABOUT FIVE MONTHS LATER.
AND THEN WATCHING THEIR PLAY
SKILLS, IT'S SO BEAUTIFUL
BECAUSE THEY ARE UNDERSTANDING
THE ROLL RELATIONSHIPS BETWEEN
THE OBJECTS AND THEY ARE
DEVELOPING THESE PRELIMINARY
PLAY ABILITIES AND THEY ARE ALL
TOGETHER.
AND THEY ARE WATCHING EACH
OTHER.
THEY ARE INITIATING ENGAGEMENT
WITH EACH OTHER ON THEIR OWN.
SHE IS FEEDING THE ADULT.
BECAUSE TIME IS SHORT, I'M NOT
GOING TO CONTINUE BUT A LOT OF
FUNNY THINGS ARE HAPPENING HERE
AROUND THIS PIECE OF CHEESE.
AND JUST SKILLS AND
COMMUNICATION SO BEAUTIFUL.
HOW WE GOT THREE KIDS WITH AXD
IN THIS PARTICULAR TREATMENT,
I'LL NEVER KNOW.
BUT THERE IS SO MUCH MORE.
I'D LOVE TO SHOW YOU AND TELL
YOU.
BUT ALL I CAN SAY IS THERE IS
JUST SO MUCH HOPE OUT THERE FOR
CHILDREN WITH AUTISM.
SO I KNOW THERE MAY BE ONE OR
TWO MORE QUESTIONS BEFORE WE
END.
WITH THAT -- 
[APPLAUSE]
>> THANK YOU FOR PERSEVERING.
I HAVE A QUESTION.
I WAS GOING TO SAVE IT TO THE
END BUT I THINK YOU HAVE GOTTEN
SO SUCCESSFUL IN YOUR TREATMENT
WORK AND SO MANY OF THE KIDS DO
FANTASTICALLY AFTER IN
DEVELOPING A RANGE OF SKILLS,
PARTICULARLY THEIR COMMUNICATION
SKILLS.
I KNOW THERE IS A SMALL SUBSET
OF CHILDREN WHO DON'T MAKE THOSE
DRAMATIC IMPROVEMENTS IN THE
COMMUNICATION SKILLS AFTER THE
INITIAL TREATMENT.
WHAT DO YOU DO FOR THOSE
CHILDREN?
I KNOW YOU CONTINUE ON.
TELL US A LITTLE BIT ABOUT WHAT
THE NEXT STEP IS.
>> THOSE ARE THE CHILDREN WHO
OCCUPY MY -- IN THE MIDDLE OF
THE NIGHT, THOUGHTS.
AND WE ARE STARTING TO DEVELOP
SOME NOVEL INTERVENTIONS FOR
CHILDREN WHO AFTER THEIR FIRST
COUPLE OF MONTHS ARE STILL NOT
OR I DON'T WANTING.
THEY ARE NOT ORIENTING.
THEY ARE ENGAGED IN A LOT OF
REPETITIVE BEHAVIORS.
THOSE CHILDREN, I COME BACK TO
THIS WHOLE NOTION OF EMBODY
MEANT.
THEY HAVE TO BECOME ACTIVE
AGENTS IN THE ENVIRONMENT.
AND THAT MEANS THAT WE HAVE TO
ALTER THE ENVIRONMENT IN
WHATEVER WAY WE CAN TO MAKE IT
SO THEY BECOME INTERESTED.
AND WE HAVE TO ENABLE THEM TO
REWARD THEMSELVES INSTANTLY FROM
SOME PHYSICAL EXPERIENCE.
SO SENSORY MOTOR ENGAGEMENT IS
SOMETHING THAT WE ARE DOING A
LOT WITH THESE CHILDREN TO SORT
OF WAKE UP THEIR ATTENTION
SYSTEMS AND AND GET THEM
REFOCUSED.
THANK YOU FOR ASKING THAT
QUESTION.
IF WE DON'T ACTIVATE THOSE
THINGS EARLY IN LIFE, THE
CHILDREN LEARN TO BECOME PASSIVE
AND LEARN NOT TO COMMUNICATE.
>> ONE MORE QUESTION.
>> WE SEE THREE CHILDREN, THREE
ADULTS WORKING WITH THEM.
VERY SUCCESSFUL.
VERY EXPENSIVE TO HAVE THAT.
BUT IF WE GO TO INDIA, WHERE YOU
HAVE THE WHOLE FAMILY, EVERYONE
THERE, WITH INTERVENTION,
TEACHING CHILDREN, THE COMMON
SENSE, WHICH COMES FROM HARD
EXPERIENCE, FROM NATURE FROM
PHYSIOLOGY, FROM SURVIVAL ROLES.
AND THEN MAYBE THIS SOLUTION AND
MORE WITH BE DRAWN TO SINGLE
FAMILIES ISOLATED WAY OF RAISING
CHILDREN AND EVERYTHING.
WE HAVE MORE SYMPTOMS AND WE
NEED AN ANALYST AND EXPANSIVE
TREATMENTS.
SUCCESSFUL.
IN SUBSTITUTE OF HUMAN
RELATIONSHIPS AND FAMILIES.
72 IT'S VERY IMPORTANT FOR THE
PARENTS AND GRANDPARENTS AND
FAMILIES TO USE THESE STRATEGIES 
STRATEGIES.
THEY ARE OUT TO BREAKFAST.
WE TAKE THEM OUT ON THE LAST DAY
OF TREATMENT.
WE WELCOME GRANDPARENTS AND WE
HAVE -- THIS ROOM IS FULL.
WE HAVE GRANDPARENTS OR PARENTS
IN THERE.
SO YOU'RE RIGHT, EVERYBODY NEEDS
TO BE INVOLVED.
HANDS ON.
THANK YOU VERY MUCH.
[APPLAUSE]
>> THANK YOU.
THEY WILL STAY FOR A FEW MINUTES
IF FOLKS WANT TO COME UP AND
IF FOLKS WANT TO COME UP AND