Bryna Siegel, Ph.D.Bryna Siegel, Ph.D.Director, Autism ClinicDirector, Autism Clinic

Bryna.siegel@ucsf.eduBryna.siegel@ucsf.eduProfessor, Child & Adolescent Professor, Child & Adolescent

PsychiatryPsychiatryChildren’s Center at Langley PorterChildren’s Center at Langley Porter

University of California, San University of California, San FranciscoFrancisco

““Give a man a fish and Give a man a fish and he’ll eat for a day;”he’ll eat for a day;”

““Give a man a Give a man a fishing pole and he fishing pole and he

will eat for a life will eat for a life time…”time…”

WHAT IS JUMPSTART? WHAT IS JUMPSTART? A NEW KIND OF EARLY INTERVENTIONA NEW KIND OF EARLY INTERVENTION

FOR THE CHILDFOR THE CHILDA Learning-to-Learn ProgramA Learning-to-Learn Program

FOR THE PARENTFOR THE PARENTA Parent-Centered ProgramA Parent-Centered Program– Didactics– Skills for Special Parenting (~Special

Education)– Being an Informed Consumer and

Advocate

Syndromes: Syndromes: Autism and the Common Autism and the Common

ColdColdThe Common ColdThe Common ColdRunny NoseRunny Nose

Stuffed SinusesStuffed Sinuses

Hacking CoughHacking Cough

SneezingSneezing

Sore ThroatSore Throat

FeverishFeverish

HeadacheHeadache

The Autistic The Autistic SpectrumSpectrum

Social IsolationSocial Isolation

Low Interest in PeersLow Interest in Peers

Echolalic SpeechEcholalic Speech

Non-conversationalNon-conversational

PerseverationPerseveration

Poor Toy PlayPoor Toy Play

Odd Motor MovementsOdd Motor Movements

What Does This Mean For Epidemiology?What Does This Mean For Epidemiology? (W(When is a sneeze a cold?)hen is a sneeze a cold?)

The Latest from the CDCThe Latest from the CDC

200720076.7:1,000= 1:1606.7:1,000= 1:160

# 1: Language concerns, #2: Social # 1: Language concerns, #2: Social

Earlier StudiesEarlier Studies1:101 to 1:222 (2000)1:101 to 1:222 (2000)

1:303 to 1:94 (20021:303 to 1:94 (2002))51%-88% w/ signs < 3 years old51%-88% w/ signs < 3 years old

~50% @ 4~50% @ 4½½-5-5½½ years old years old

Let’s Just Treat What’s WrongLet’s Just Treat What’s Wrong

Importance (or Not) of DiagnosisImportance (or Not) of Diagnosis

Identifying Learning ProcessesIdentifying Learning Processes

Identification of What Needs to be LearnedIdentification of What Needs to be Learned

Figuring Out How to Teach so the Child Figuring Out How to Teach so the Child becomes an Independent Learnerbecomes an Independent Learner

HowHow Social Deficits Affect Learning Social Deficits Affect Learning

Lack of socio-emotional reciprocity=Lack of socio-emotional reciprocity=Lack of desire to please othersLack of desire to please othersLow response to social reinforcers Low response to social reinforcers Lacks concern re: effect on othersLacks concern re: effect on others

Lack of awareness of others=Lack of awareness of others= Motive to please self is foremostMotive to please self is foremost Instrumental learning styleInstrumental learning style

Lack of social imitation=Lack of social imitation= Low “incidental” learning via copying othersLow “incidental” learning via copying others

No drive to follow group normsNo drive to follow group norms

HowHow Non-Verbal Communication Non-Verbal Communication Deficits Affect LearningDeficits Affect Learning

Low response to facial cues: Low response to facial cues: May not understand smiles of encouragementMay not understand smiles of encouragementMay not understand warnings of displeasureMay not understand warnings of displeasure

Ignores pointing, hand signals, head shakes that Ignores pointing, hand signals, head shakes that clarify words, control behaviorclarify words, control behavior Poor reception of non-verbal cues seen as non-Poor reception of non-verbal cues seen as non-compliance/ defiancecompliance/ defiancePoor reception of non-verbal cues taken as inability Poor reception of non-verbal cues taken as inability to comprehend words/ voice toneto comprehend words/ voice tone

How How Verbal CommunicationVerbal CommunicationDeficits Affect LearningDeficits Affect Learning

Limitations in receptive languageLimitations in receptive language Signal:noise problem in incoming verbal ‘signal’Signal:noise problem in incoming verbal ‘signal’

-’noisy’ social-linguistic field-’noisy’ social-linguistic field-limitations to pure memory ‘buffer’-limitations to pure memory ‘buffer’

Language processing with poor ‘parsing’Language processing with poor ‘parsing’

Limitations in expressive languageLimitations in expressive languageOral-motor apraxia has negative synergy w/ low Oral-motor apraxia has negative synergy w/ low

expressive drive expressive drive Without ‘theory of mind’, no drive to ‘share’ ideasWithout ‘theory of mind’, no drive to ‘share’ ideas

HowHow Play and Exploration Play and Exploration Deficits Affect LearningDeficits Affect Learning

Lack of imagination in play=Lack of imagination in play=No re-enactment of experience via play to link No re-enactment of experience via play to link action and languageaction and languageNo symbols to link to language to abstract thinkingNo symbols to link to language to abstract thinking

Stereotyped and repetitive interests=Stereotyped and repetitive interests=Averse to novelty/ low curiosity Averse to novelty/ low curiosity Limited learning through exploration Limited learning through exploration Repetitive interests = mental ‘down time’Repetitive interests = mental ‘down time’

Theoretical Underpinnings forTheoretical Underpinnings for JumpStart- IJumpStart- I

The Autistic ‘Spectrum’ is a Collection of The Autistic ‘Spectrum’ is a Collection of ‘Autistic Learning Disabilities’ and ‘Autistic ‘Autistic Learning Disabilities’ and ‘Autistic Learning Styles’ Essentially Described by Learning Styles’ Essentially Described by the Various DSM Diagnostic Criteria the Various DSM Diagnostic Criteria

Each Criterion Met Specifies a Needed Each Criterion Met Specifies a Needed Area of Remediation and/or Delineates An Area of Remediation and/or Delineates An Available or Non-Available Modality for Available or Non-Available Modality for Perceiving,Perceiving, Processing, & Output of Processing, & Output of Stimuli Stimuli

Theoretical Underpinnings forTheoretical Underpinnings for JumpStart- IJumpStart- III

The ‘Developmental’ PerspectiveThe ‘Developmental’ Perspective

Evolution has worked out the most efficient Evolution has worked out the most efficient sequence for skill acquisition (and supporting sequence for skill acquisition (and supporting neural architecture).neural architecture).

Developmental psychology maps that sequence.Developmental psychology maps that sequence.

Children learn at different rates and in different Children learn at different rates and in different ways, but the ways, but the sequencesequence of skills-building needs to of skills-building needs to be developmentally-ordered to provide a solid be developmentally-ordered to provide a solid foundation.foundation.

Introducing Introducing JumpStartJumpStart

Intensive, one-week, parent trainingIntensive, one-week, parent training

Center-based, two paired families per Center-based, two paired families per sessionsession

Development of child’s learning readiness Development of child’s learning readiness skills so parents can ‘wrap-around’ at homeskills so parents can ‘wrap-around’ at home

Focus on helping families learning skills to Focus on helping families learning skills to parent a child with autismparent a child with autism

Teaching parents to be discriminating Teaching parents to be discriminating consumers and ‘general contractors’consumers and ‘general contractors’

JumpStartJumpStart: : Goals for the ChildGoals for the Child

Provide initial intervention for ASD children Provide initial intervention for ASD children (mostly under 36 months)(mostly under 36 months)Develop learning readiness so the child Develop learning readiness so the child can benefit from a wider range of can benefit from a wider range of educational and therapeutic resourceseducational and therapeutic resources‘‘Extended diagnostic period’ to develop Extended diagnostic period’ to develop on-going treatment plans based on on-going treatment plans based on individual learning strengths and individual learning strengths and weaknesses, and motivational profileweaknesses, and motivational profile

JumpStartJumpStart: : Goals for the FamilyGoals for the Family

Train parents to ‘use a fishing pole, not Train parents to ‘use a fishing pole, not just eat fish’just eat fish’

Introduce parents to modes of treatmentIntroduce parents to modes of treatment

Promote communication about autism Promote communication about autism (mother (mother ↔↔ father, parents father, parents ↔↔siblings)siblings)

Encourage family’s ‘non-autism’ well-beingEncourage family’s ‘non-autism’ well-being

Facilitate entry into appropriate on-going Facilitate entry into appropriate on-going servicesservices

JumpStartJumpStart: : Goals of Goals of Training Training

Teach parents to think like a teacher

Teach parents to make home an ‘autism-specific’ learning environment

Train treators how this child learns for transition to on-going service, e.g., :Program specialists, School psychologists,

Special day class, RSP & inclusion teachers

ABA tutors and other para-professionals.

JumpStartJumpStart: : Longer Term GoalsLonger Term Goals

Empirically test a model for earliest Empirically test a model for earliest intervention centered on parent-trainingintervention centered on parent-training

Become a community center for education Become a community center for education and treatment of children with autismand treatment of children with autism

Reduce the distress associated with Reduce the distress associated with parenting a child with autismparenting a child with autism

Create more informed consumers of Create more informed consumers of autism services autism services

JumpStart Program ActivitiesJumpStart Program Activities

JumpStartJumpStart: : Daily Parent TeachingDaily Parent Teaching

All Days: All Days: Direct parent didactics on autismDirect parent didactics on autism

Days 1-4: Days 1-4: Observation through video & 1-Observation through video & 1-way mirrorway mirror– Watch Master Teacher, Review, & Watch Master Teacher, Review, &

Analyze Copy Master Teacher & Self-Analyze Copy Master Teacher & Self-CritiqueCritique

Days 3-4: Days 3-4: Cross-teach another childCross-teach another childDay 5: Day 5: ‘Docenting’: Observe future treators‘Docenting’: Observe future treators

JumpStartJumpStart: : Psycho-socialPsycho-social Parent Intervention Parent Intervention

MethodsMethods

Group sessions for parents/ Topics:Group sessions for parents/ Topics:

Grief responses to the diagnosis

Impact on the marriage and family

Impact on individual life goals

Parent pairings for social supportParent pairings for social support

The Child-Focused Program:The Child-Focused Program:Three TracksThree Tracks

Cognitive Learning Readiness:Cognitive Learning Readiness:

Motivation, Cause & Effect, Pivotal Response Motivation, Cause & Effect, Pivotal Response

Communication Foundations:Communication Foundations:

VIA (Visual Interaction Augmentation)VIA (Visual Interaction Augmentation)

Learning Through Child-Led Play:Learning Through Child-Led Play:

Increasing Reciprocity and Expanding Increasing Reciprocity and Expanding RepertoireRepertoire

I: Developmental-Behavioral ApproachI: Developmental-Behavioral Approach

Compliance and Attention:Compliance and Attention:

Developing an ‘Instructional Contract’Developing an ‘Instructional Contract’

Expanding Reinforcers: 1Expanding Reinforcers: 1o o SocialSocial

Motivation:Motivation:

Developing A Reward HierarchyDeveloping A Reward Hierarchy

Moving Toward Naturalistic/ Contextual Moving Toward Naturalistic/ Contextual Reinforcers (a la PRT)Reinforcers (a la PRT)

Teaching That Is Teaching That Is Developmental Developmental and and BehavioralBehavioral

Based on where the child is Based on where the child is developmentally (e.g. 18 month receptive developmentally (e.g. 18 month receptive language)—teach the language)—teach the next next set of skills.set of skills.

DoDo teach using validated behavioral teach using validated behavioral principles. (Don’t teach from a ‘cookbook’ principles. (Don’t teach from a ‘cookbook’ dog-training manual).dog-training manual).

Teach the child according to needs and Teach the child according to needs and interest to establish parent as source of interest to establish parent as source of learning—just like any child.learning—just like any child.

II: Communication FoundationsII: Communication Foundations

VIA Is About:VIA Is About:

Communication Based on a Communication Based on a Developmental Psycholinguistics Model of Developmental Psycholinguistics Model of HabilitationHabilitation

Teaching ParalinguisticsTeaching Paralinguistics

Teaching with Augmentative Visuals Teaching with Augmentative Visuals

VIA’s Goal:VIA’s Goal:

Increasing Drive to CommunicateIncreasing Drive to Communicate

Increasing Spontaneity/ InitiativeIncreasing Spontaneity/ Initiative

III: Learning Through Child-Led PlayIII: Learning Through Child-Led Play

Increasing ReciprocityIncreasing ReciprocityA la DIR, Expanding ‘Circles’/ RDIA la DIR, Expanding ‘Circles’/ RDI

Expanding RepertoireExpanding RepertoireIncrease Curiosity/ Increase ExplorationIncrease Curiosity/ Increase Exploration

Decrease Behaviors Incompatible with Decrease Behaviors Incompatible with LearningLearningScaffolding Sensory ‘Threshold’ Scaffolding Sensory ‘Threshold’ ProblemsProblemsDecrease Repetitiveness/ RigidityDecrease Repetitiveness/ Rigidity

The Parent-Centered Program:The Parent-Centered Program:Three TracksThree Tracks

I: Didactics: Learning About Autism and I: Didactics: Learning About Autism and Autism TreatmentsAutism Treatments

What Autism IsWhat Autism Is

What We Know Now/ What We Might What We Know Now/ What We Might Learn/ Crystal Ball ReadingsLearn/ Crystal Ball Readings

Teaching How Children with Autism LearnTeaching How Children with Autism Learn

The ALD/ALS ModelThe ALD/ALS Model

Teaching What the Treatment Models AreTeaching What the Treatment Models Are

Pre Fixe vs Al a CartePre Fixe vs Al a Carte DiningDining

‘‘Vaccinating’ Parents Against False HopeVaccinating’ Parents Against False Hope

II: Wrap Around “Special Parenting”: II: Wrap Around “Special Parenting”: The Flip-Side of Special EducationThe Flip-Side of Special Education

Learning Which Strategies Are Effective

Observing Learning/ ‘Reading’ the Child

What the Child Apprehends/ Misapprehends

How to Implement The ‘Home Edition’ of Txs

Developmental-Behavioral Teaching

Learning to Communicate

Mining the Value of Play

III: Dealing Proactively w/ ProfessionalsIII: Dealing Proactively w/ Professionals

Being An Active Participant in: Being An Active Participant in: Private speech and language therapyPrivate speech and language therapyOccupational therapyOccupational therapyPlay Based TherapyPlay Based Therapy

It’s Not “How Many Hours?”: Content Over It’s Not “How Many Hours?”: Content Over FormFormAdvocacy with Systems of CareAdvocacy with Systems of Care

The Regional CenterThe Regional CenterThe SchoolsThe SchoolsDoctors and Other ProfessionalsDoctors and Other Professionals

Four Special Emphases in JumpStartFour Special Emphases in JumpStart

Establishing the Instructional ‘Contract’Establishing the Instructional ‘Contract’

Areas of Child InstructionAreas of Child Instruction

Pivotal Responding & the Self-Initiating LearnerPivotal Responding & the Self-Initiating Learner

Steps to Self-Initiated LearningSteps to Self-Initiated Learning

Developmentally-Based Pre-Linguistic Developmentally-Based Pre-Linguistic Communication Training Communication Training

VIA (Visual Interaction Augmentation)VIA (Visual Interaction Augmentation)Applying the ALD/ALS (Autistic Learning Applying the ALD/ALS (Autistic Learning Disability/ Autistic Learn Styles) ModelDisability/ Autistic Learn Styles) Model

1: JumpStart: 1: JumpStart: Cause and EffectCause and Effect

Assessing the Instructional ContractAssessing the Instructional Contract

Teach ‘Do Something to Get Something’Teach ‘Do Something to Get Something’

Provide High Predictability:Provide High Predictability:Limit-settingLimit-settingMotor-promptingMotor-promptingRepetitionRepetitionVisuals/ Visual SchedulingVisuals/ Visual Scheduling

2-JumpStart: 2-JumpStart: MotivationMotivation

First:First: Assess Reinforcer Hierarchy Assess Reinforcer HierarchyFoods/ Sensory Rewards/ ActivitiesFoods/ Sensory Rewards/ Activities

Second:Second: DTT with external reinforcers DTT with external reinforcersThird:Third: PRT w/ intrinsic reinforcers PRT w/ intrinsic reinforcersFourth:Fourth: Titrate Reinforcement Schedule by Titrate Reinforcement Schedule by Task DifficultyTask DifficultyFifth:Fifth: Don’t Let Data Get in the Way Don’t Let Data Get in the Way

Principles of Principles of Pivotal Response TrainingPivotal Response Training

Incidental Teaching

(Natural opportunities)

Mand-Model(Request-prompt)

Time- Delay

(Wait for child)

Milieu Teaching(Combines all 3)

3-JumpStart: 3-JumpStart: Self-initiated LearningSelf-initiated Learning

First:First: Non-verbal imitation training Non-verbal imitation training

Second:Second: Opportunities to model high Opportunities to model high value events (incidental learning)value events (incidental learning)

Third:Third: Play turn-taking with high value Play turn-taking with high value activitiesactivities

Fourth:Fourth: Play elaboration based on intrinsic Play elaboration based on intrinsic reward value of initial activityreward value of initial activity

4-JumpStart/ VIA:4-JumpStart/ VIA:Three Key Communicative CompetenciesThree Key Communicative Competencies

Addressing Para-linguistic Deficits:Addressing Para-linguistic Deficits: Pair non-verbal communication with visualsPair non-verbal communication with visuals Pair vocal tone with visual cuingPair vocal tone with visual cuing

Addressing Theory of Mind and CentralAddressing Theory of Mind and Central Coherence DeficitsCoherence Deficits

Teach to what the child has ‘in mind’Teach to what the child has ‘in mind’ Start teach w/ many specifics, not generalStart teach w/ many specifics, not general

Teaching Language DevelopmentallyTeaching Language Developmentally

VIA VIA MechanicsMechanics

Photographic (or 3-D) icons onlyPhotographic (or 3-D) icons onlyPhotos of exactly what the child ‘has in mind’Photos of exactly what the child ‘has in mind’Icons with words labels to promote auditory Icons with words labels to promote auditory

recognitionrecognitionIcons located when and where the child has Icons located when and where the child has

the object or action ‘in mind’the object or action ‘in mind’Orally: Speak ‘motherese’Orally: Speak ‘motherese’Gesturally: ‘Motherese’ para-linguisticsGesturally: ‘Motherese’ para-linguistics

VIA:VIA:Contrast with Teaching ‘Verbal Behavior’Contrast with Teaching ‘Verbal Behavior’

Teach semantics in developmental sequence Teach semantics in developmental sequence (horizontally, not vertically)(horizontally, not vertically)

Teach ‘multiple SDs’, not multiple words in a setTeach ‘multiple SDs’, not multiple words in a set

Why? To develop central coherence/ linguistic Why? To develop central coherence/ linguistic prototypesprototypes

Teach concepts across natural contexts so Teach concepts across natural contexts so ‘generalization’ is not an extra step‘generalization’ is not an extra step

JumpStart/ VIA:JumpStart/ VIA:RationaleRationale

Developmentally-based acquisition of language Developmentally-based acquisition of language conceptsconcepts

Emphasizes teaching integrated para-linguistics as Emphasizes teaching integrated para-linguistics as foundational to linguistics foundational to linguistics

Developmentally focused on increasing spontaneity Developmentally focused on increasing spontaneity over MLU or speech clarity over MLU or speech clarity

Focused on increasing inter-subjectivity by ‘sharing’ Focused on increasing inter-subjectivity by ‘sharing’ of desired object of communicationof desired object of communication

JumpStart: Research Component-I

Overall Treatment Model Efficacy

Pre-test children at time of diagnosis:Pre-test children at time of diagnosis:Symptoms/ severity (DSM, ADI-R, ADOS)Symptoms/ severity (DSM, ADI-R, ADOS)Language and Cognition (PLS, M-P, WPPSI)Language and Cognition (PLS, M-P, WPPSI)Social and language pragmatics (CSBS)Social and language pragmatics (CSBS)

Post-test after Jump StartPost-test after Jump StartPost-test after 6m & 12m compared to Post-test after 6m & 12m compared to ‘treatment-as-usual’ (EIBI or SDC)‘treatment-as-usual’ (EIBI or SDC)

JumpStart: Research Component-II

VIA vs PECS

Efficacy of a behavioral model for visually-based augmentative communication v a visual-developmentally based modelManual developmentSmall RCT of VIA v PECSH: VIA= Language pragmaticsSpontaneous requesting

JumpStart: Research Component-III

‘Developmental’ DT v DT as Usual

Teach linguistic prototypes, not verbal SDsTeach linguistic prototypes, not verbal SDs

Periodic data, not trial-by-trial dataPeriodic data, not trial-by-trial data

Build in more child choice Build in more child choice

Dynamically inter-leaf adult-led and child-Dynamically inter-leaf adult-led and child-initiated trials by consistently reinforcing initiated trials by consistently reinforcing lead-taking by childlead-taking by child

References:References:

Siegel, B (2003). Siegel, B (2003). Helping Children with Helping Children with Autism Learn: Treatment Approaches for Autism Learn: Treatment Approaches for Parents and ProfessionalsParents and Professionals, New York: , New York: Oxford University Press.Oxford University Press.

Siegel, B (1996). Siegel, B (1996). The World of the Autistic The World of the Autistic Child: Understanding and Treating Autistic Child: Understanding and Treating Autistic Spectrum DisordersSpectrum Disorders, New York: Oxford , New York: Oxford University Press.University Press.