Autism - What Now?Robin Epstein M.D.

University of California@ Irvine

Create progress

Develop a team

YOU are the leader!!

Take Inventory

General ConsiderationsNo medical cure for autismEducational and behavioral therapies are the

first line of interventionMedical interventions target intolerable or

severe behaviors that do not respond to therapeutic interventions and thereby impede the child’s progress

Elements of Care PlanMedical diagnosis and evaluationEducational PlanLanguage interventionOccupational/Physical therapySocial SupportFamily support –(Lecavalier) 58% of mom report clinical

stress. 80% divorce rate.Psychological MedicationCAM – Complementary and Alternative Medicines

Take Care of YourselfBreatheGrieveAnger

Educate yourselfSupport systemsJoin with your

spouse80% divorce rate

Mental health support

Heterogeneity–Every Child is Unique!

Intellect – Up to 50% MR, but many gifted (25%).

Use of language –nonverbal, nonfunctional to superior, but nonsocial

Aberrant behaviorsLevels of anxiety PersonalitySuperimposed physical and neurologic

disorders

Assess Strengths and WeaknessesUnderlying

intelligenceMemoryLevel of functioning

(acheivement)Receptive and

Expressive LanguagePragmatic languageMood labilityOverly social

AttentionActivity levelPersonalityAnxiety and OCD

behaviorPerspective-takingAbstract thinkingSensory/motor

issuesProblem-solving

Create Goals

Be reasonableExamples:

Eye contactTry new sports on the playgroundDress by selfSay “hi” to classmate without promptingCreate an imaginary story by himselfTry new foods

Constantly reassess and anticipate

People as ResourcesIn school (public) PrivateTeacherSp/Lang therapistsResource

Specialist(RSP)Occupational Therapist

(OT)School psych/counselorPrincipal

Speech Therapy/Social skills

OTPsychologistMDEducational

specialists/tutorsAdvocacyFriends and family (+/-)

Books as ResourcesAttwoodMichelle Garcia

WinnerCarol GraySkillstreamingHawthorne PressHow Well Does Your

IEP Measure Up

Asperger Syndrome- A Practical Guide for Teachers

Amelia BedeliaAesop’s FablesIdiomsOvercoming

AutismKoegel

Items as ResourcesGames – Pictionary,

Simon, Taboo, Stare, Apples to Apples, Bingo

TrampolineWeighted VestChew stickSensory balls

Tape recorderComputerTeacher SupplyKeyboarding

programsDragon dictateKeep a personal

hanbook

Language Therapy – School and PrivateSpeech therapy by 2 ½ has a 70%

improvement rate. (McGee 1999)AB88 – In California insurance should cover

speech when medically indicated for autism.Pragmatic language (social language) –

Problem solving, Social stories

Occupational Therapy AB88 applies here as well.Fine motor – buttoning, zip, lock, shoes

are all medically necessary! Writing is school responsibility.

Balance and safety.Oromotor – If FTT or anemic, then

medically necessary.Children learn by approach to novel

situationsSensorimotor processing is everywhere!

Social SkillsAt school – lunch bunch, social skills groups,

peer projects, recess, peer buddies.Community social skills group – must be at

patient level, hard to find, but vital!Community camps and challenge teamsPlaydates and siblings – Skills streaming and

Michelle Garcia Winner.

Family and PsychologicalParent groups – SEEPAC, Aspergers groupPsychologists specifically trained to work

with autistic childrenTeaching imaginary play and flexibilityFlexibility and areas of greyDepression and anxietyWorking with family on toileting, sleep,

transitions, sexuality

MedicalPE – Dysmorphology, Neurocutaneous, Reflexes Labs: High resolution karyotype, DNA fragile X,

acyl carnitine, serum AA, urine OA. Consider Pb, TSH, CBC, LFTs, subtelomeric evaluation, FISH for PWS, WS. MRI not usually indicated. Consider EEG-25% abnormal

Not indicated: allergy tests, hair analysis, chelation, gut permeability, stool analysis.

Genetics – Counseling!! Recurrence 7% Even higher for associated issues – ADHD, lang delay, OCD, social issues

Creation of an educational/behavioral programThe majority of interventions should be

provided by - Under age 3 regional center OR Over age 3 the local school district

Conflict of interest (like an insurance co)Educational model

Intervention ModelHow much intervention is enough?Few controlled studies -Unethical, difficultOver 150 uncontrolled studiesSome programs provide a few hours of

speech and others provide 40+ of intensive intervention.

A World of PossibilitiesABA/IBI –AAN – 5 studies,

overall positive, but questionable evidence

PRT-pivotal responseSDC – special day

class1:1 aideFull inclusionReverse

Mainstreaming

TEACCHNPS – nonpublic

schoolsFloortimeSpeech therapySMI – sensorimotor

integrationFacilitated

communicationPECS- picture

exchange

Behavioral interventionsLandmark study of early intervention

Lovaas 1987 UCLA –ave age 2.8yrs, 40hrs/wk, 1:1 . 2yrs led to 50% “recovered”.

Lots of methodological problems Benefits have been shown in similar studies

Educating Children w/Autism 2001 – Nat’l Research Council/ NAS Metanalysis, consensus,

Adopted by AAP,AAN, AACAP

EARLY INTERVENTION WORKS!!! Key features –

-Early (bet 3&5) & intensive = At least 20 hrs/wk

-Focus on social, communication, and behavioral deficits

*Behavioral vs developmental*1:1 vs group and home vs school

Howard – 2006 - UCLAEarly Intensive Beh Tx

Lovaas modified #2130-40 hrs/wkOver 3 yrs starting at

age 3More likely to be

included w/ or w/o aide (6 fully included)

Higher IQ/ higher adaptive levels – significance?

Typ Pub School Spec Ed

Variable #21Intervention over 3 yrs

starting at age 31 fully included

Most research supports 1:1 behavioral program

Cost prohibitive

Classroom Program OptionsSome examples:

Full inclusion – private services onlyFull inclussion – RSP, Sp/lang, OT, SocialFull inclusion – Aide + above (General aide vs DTT

aide)Special Day class mixed with Typical PeersSpecial Day Class – Mild moderate vs Autism

programSpecial Day Class – 1:1 or 1:2County – SELPA programsNonpublic School – Prentice, CDC, Mardan, New

VistaResidential

Discussion of an OC Preschool Program

MedicationsTry behavioral and educational interventions

first.Medications are a last resortNecessary in 2/3rds of cases2 or more meds needed 25% of the timeMedications don’t treat autismMedications treat target symptoms

associated with autismOnly FDA approved medication is Risperdol

Disadvantages To Using Medication Limited research in childrenNegative findings from research, not

publishedLong term effects of many medications are

unknownThe effect of psychotropic medications on

the developing brains are unknownThe neurochemical basis of autism is

unknownMedication use in this population is almost

always chronic

Candidate MedicationsSSRIsStimulantsAtypical

AntipsychoticsAtomoxetineAlpha 2 agonistsBeta blockers

Typical antipsychotics

donazepil/memantine

buspironenaltraxoneMood Stabilizers

Target SymptomsAttention/Hyperactivity

Stimulants AtomoxetineAtypical antipsychotics

Anxiety/Depression/Inflexibility/OCDSSRIsAtypical antipsychotics

Agression/AgitationAtypical antipsychotics

Complementary and AlternativeHyperbaric oxygenChelationSecretinStem cellsNeuron injectionsGFCF dietChiropractics

HerbalsAntifungalsVitaminsAllergiesHeavy metals

CAMSecretin – the most studied drug. N=500. No

benefit!Facilitated Communication – most well controlled

research = negative resultsAuditory Integration – all reviews of research reveal

negative resultsGluten/Casein-free – 29 studies, only one showed

benefit and that was with behaviors only, another 3 showed benefit but children had begun intensive intervention programs simultaneously.

B6 and Mg – research shows no benefit and may cause polyneuropathy

Chelation – no benefit, 2 US deaths*Omega 3 FAs – Positive effect on cognitive abilities*SMI – Improved motor skills

CAM – Omega 3 FAsOxford-Durham Study 2005 – Dev Coord D/O.

117 children. Showed measurable improvements in reading, spelling, behavior over 3mo. Crossover as well.

Pilot study in Vienna (Amminger 2007) 13kids 1.5g/d improved beh in autism

Studies have shown improved attention ADHD

Last month – pregnant woman eating fish high in O3FA – children have higher lang scores

Complementary and Alternative Approaches

Quackwatch.comThere is no quick fixSome support for the use of Omega 3 FAsIf it doesn’t hurt and is not too expensive go

ahead, but don’t forego proven help to pay for the unproven “cure” of the month

Create Your TeamPeople who understand your childProgressive out of the box thinkersNo obstructionistsYou can exclude people from your IEP team

Think Ahead - AnticipateAreas of vulnerability:

ReadingReading Comprehension/Math work problemsTransitions – K-> 1st. 3rd-4th. Middle School. Transition to

adulthood.

Social challenges – 4th Grade, Middle School, Trans. to adulthood.

Written expressionAbstract ThinkingDriving and Independent livingCognitive delaysFine and gross motor issues

Take Care of Yourself/Family/FutureReality CheckEvery family has its own rhythm and limits.

Listen to the rhythm!Financial Security – Find your comfort zone.

Do not overextend. Special needs trust. Consult and attorney.

Other childrenEveryone’s mental health

ConclusionKnow your childCreate a teamBe creativeUtilize interventionsEarly intervention leads to huge improvements in

quality of life for child and family. It can reduce costs by 2/3 lifelong.

Comprehensive care includes behavioral support, sp&lang, social, and occupational therapies.

Medication can be used to improve secondary/severe symptomatology.

Monitor usage.CAM can be enticing, but research first!

National Academy of SciencesCommittee on Educational Interventions

“The available research strongly suggests that a substantial subset of children with ASD are able to make marked progress during the period that they receive early intervention and that nearly all children with ASD show some benefit.”