Bryna Siegel, Ph.D. Director, Autism Clinic Bryna.siegel@ucsf

Bryna Siegel, Ph.D. Director, Autism Clinic [email protected] Professor, Child & Adolescent Psychiatry Children’s Center at Langley Porter University of California, San Francisco

“Give a man a fish and he’ll eat for a day;” “Give a man a fishing pole and he will eat for a life time ”

WHAT IS JUMPSTART? A NEW KIND OF EARLY INTERVENTION FOR THE CHILD A Learning-to-Learn Program FOR THE PARENT A Parent-Centered Program – Didactics – Skills for Special Parenting ( Special Education) – Being an Informed Consumer and Advocate

Syndromes: Autism and the Common Cold The Common Cold The Autistic Runny Nose Stuffed Sinuses Hacking Cough Sneezing Sore Throat Feverish Headache Spectrum Social Isolation Low Interest in Peers Echolalic Speech Non-conversational Perseveration Poor Toy Play Odd Motor Movements

What Does This Mean For Epidemiology? (When is a sneeze a cold?) The Latest from the CDC 2007 6.7:1,000 1:160 # 1: Language concerns, #2: Social Earlier Studies 1:101 to 1:222 (2000) 1:303 to 1:94 (2002) 51%-88% w/ signs 3 years old 50% @ 4½-5½ years old

Let’s Just Treat What’s Wrong Importance (or Not) of Diagnosis Identifying Learning Processes Identification of What Needs to be Learned Figuring Out How to Teach so the Child becomes an Independent Learner

How Social Deficits Affect Learning Lack of socio-emotional reciprocity Lack of desire to please others Low response to social reinforcers Lacks concern re: effect on others Lack of awareness of others Motive to please self is foremost Instrumental learning style Lack of social imitation Low “incidental” learning via copying others No drive to follow group norms

How Non-Verbal Communication Deficits Affect Learning Low response to facial cues: May not understand smiles of encouragement May not understand warnings of displeasure Ignores pointing, hand signals, head shakes that clarify words, control behavior Poor reception of non-verbal cues seen as noncompliance/ defiance Poor reception of non-verbal cues taken as inability to comprehend words/ voice tone

How Verbal Communication Deficits Affect Learning Limitations in receptive language Signal:noise problem in incoming verbal ‘signal’ -’noisy’ social-linguistic field -limitations to pure memory ‘buffer’ Language processing with poor ‘parsing’ Limitations in expressive language Oral-motor apraxia has negative synergy w/ low expressive expressiv drive Without ‘theory of mind’, no drive to ‘share’ ideas

How Play and Exploration Deficits Affect Learning Lack of imagination in play No re-enactment of experience via play to link action and language No symbols to link to language to abstract thinking Stereotyped and repetitive interests Averse to novelty/ low curiosity Limited learning through exploration Repetitive interests mental ‘down time’

Theoretical Underpinnings for JumpStart- I The Autistic ‘Spectrum’ is a Collection of ‘Autistic Learning Disabilities’ and ‘Autistic Learning Styles’ Essentially Described by the Various DSM Diagnostic Criteria Each Criterion Met Specifies a Needed Area of Remediation and/or Delineates An Available or Non-Available Modality for Perceiving, Processing, & Output of Stimuli

Theoretical Underpinnings for JumpStart- II The ‘Developmental’ Perspective Evolution has worked out the most efficient sequence for skill acquisition (and supporting neural architecture). Developmental psychology maps that sequence. Children learn at different rates and in different ways, but the sequence of skills-building needs to be developmentally-ordered to provide a solid foundation.

Introducing JumpStart Intensive, one-week, parent training Center-based, two paired families per session Development of child’s learning readiness skills so parents can ‘wrap-around’ at home Focus on helping families learning skills to parent a child with autism Teaching parents to be discriminating consumers and ‘general contractors’

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

JumpStart: Goals for the Family Train parents to ‘use a fishing pole, not just eat fish’ Introduce parents to modes of treatment Promote communication about autism (mother father, parents siblings) Encourage family’s ‘non-autism’ well-being Facilitate entry into appropriate on-going services

JumpStart: Goals of Training Teach parents to think like a teacher Teach parents to make home an ‘autismspecific’ 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.

JumpStart: Longer Term Goals Empirically test a model for earliest intervention centered on parent-training Become a community center for education and treatment of children with autism Reduce the distress associated with parenting a child with autism Create more informed consumers of autism services

JumpStart Program Activities

JumpStart: Daily Parent Teaching All Days: Direct parent didactics on autism Days 1-4: Observation through video & 1way mirror – Watch Master Teacher, Review, & Analyze Copy Master Teacher & SelfCritique Days 3-4: Cross-teach another child Day 5: ‘Docenting’: Observe future treators

JumpStart: Psycho-social Parent Intervention Methods 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 support

The Child-Focused Program: Three Tracks Cognitive Learning Readiness: Motivation, Cause & Effect, Pivotal Response Communication Foundations: VIA (Visual Interaction Augmentation) Learning Through Child-Led Play: Increasing Reciprocity and Expanding Repertoire

I: Developmental-Behavioral Approach Compliance and Attention: Developing an ‘Instructional Contract’ Expanding Reinforcers: 1o Social Motivation: Developing A Reward Hierarchy Moving Toward Naturalistic/ Contextual Reinforcers (a la PRT)

Teaching That Is Developmental and Behavioral Based on where the child is developmentally (e.g. 18 month receptive language)—teach the next set of skills. Do teach using validated behavioral principles. (Don’t teach from a ‘cookbook’ dog-training manual). Teach the child according to needs and interest to establish parent as source of learning—just like any child.

II: Communication Foundations VIA Is About: Communication Based on a Developmental Psycholinguistics Model of Habilitation Teaching Paralinguistics Teaching with Augmentative Visuals VIA’s Goal: Increasing Drive to Communicate Increasing Spontaneity/ Initiative

III: Learning Through Child-Led Play Increasing Reciprocity A la DIR, Expanding ‘Circles’/ RDI Expanding Repertoire Increase Curiosity/ Increase Exploration Decrease Behaviors Incompatible with Learning Scaffolding Sensory ‘Threshold’ Problems Decrease Repetitiveness/ Rigidity

The Parent-Centered Program: Three Tracks

I: Didactics: Learning About Autism and Autism Treatments What Autism Is What We Know Now/ What We Might Learn/ Crystal Ball Readings Teaching How Children with Autism Learn The ALD/ALS Model Teaching What the Treatment Models Are Pre Fixe vs Al a Carte Dining ‘Vaccinating’ Parents Against False Hope

II: Wrap Around “Special Parenting”: The 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/ Professionals Being An Active Participant in: Private speech and language therapy Occupational therapy Play Based Therapy It’s Not “How Many Hours?”: Content Over Form Advocacy with Systems of Care The Regional Center The Schools Doctors and Other Professionals

Four Special Emphases in JumpStart Establishing the Instructional ‘Contract’ Areas of Child Instruction Pivotal Responding & the Self-Initiating Learner Steps to Self-Initiated Learning Developmentally-Based Pre-Linguistic Communication Training VIA (Visual Interaction Augmentation) Applying the ALD/ALS (Autistic Learning Disability/ Autistic Learn Styles) Model

1: JumpStart: Cause and Effect Assessing the Instructional Contract Teach ‘Do Something to Get Something’ Provide High Predictability: Limit-setting Motor-prompting Repetition Visuals/ Visual Scheduling

2-JumpStart: Motivation First: Assess Reinforcer Hierarchy Foods/ Sensory Rewards/ Activities Second: DTT with external reinforcers Third: PRT w/ intrinsic reinforcers Fourth: Titrate Reinforcement Schedule by Task Difficulty Fifth: Don’t Let Data Get in the Way

Principles of Pivotal Response Training Incidental Teaching (Natural opportunities) MandModel (Requestprompt) Milieu Teaching (Combines all 3) TimeDelay (Wait for child)

3-JumpStart: Self-initiated Learning First: Non-verbal imitation training Second: Opportunities to model high value events (incidental learning) Third: Play turn-taking with high value activities Fourth: Play elaboration based on intrinsic reward value of initial activity

4-JumpStart/ VIA: Three Key Communicative Competencies Addressing Para-linguistic Deficits: Pair non-verbal communication with visuals Pair vocal tone with visual cuing Addressing Theory of Mind and Central Coherence Deficits Teach to what the child has ‘in mind’ Start teach w/ many specifics, not general Teaching Language Developmentally

VIA Mechanics Photographic (or 3-D) icons only Photos of exactly what the child ‘has in mind’ Icons with words labels to promote auditory recognition Icons located when and where the child has the object or action ‘in mind’ Orally: Speak ‘motherese’ Gesturally: ‘Motherese’ para-linguistics

VIA: Contrast with Teaching ‘Verbal Behavior’ Teach semantics in developmental sequence (horizontally, not vertically) Teach ‘multiple SDs’, not multiple words in a set Why? To develop central coherence/ linguistic prototypes Teach concepts across natural contexts so ‘generalization’ is not an extra step

JumpStart/ VIA: Rationale Developmentally-based acquisition of language concepts Emphasizes teaching integrated para-linguistics as foundational to linguistics Developmentally focused on increasing spontaneity over MLU or speech clarity Focused on increasing inter-subjectivity by ‘sharing’ of desired object of communication

JumpStart: Research Component-I Overall Treatment Model Efficacy Pre-test children at time of diagnosis: Symptoms/ severity (DSM, ADI-R, ADOS) Language and Cognition (PLS, M-P, WPPSI) Social and language pragmatics (CSBS) Post-test after Jump Start Post-test after 6m & 12m compared to ‘treatment-as-usual’ (EIBI or SDC)

JumpStart: Research Component-II VIA vs PECS Efficacy of a behavioral model for visuallybased augmentative communication v a visual-developmentally based model Manual development Small RCT of VIA v PECS H: VIA Language pragmatics Spontaneous requesting

JumpStart: Research Component-III ‘Developmental’ DT v DT as Usual Teach linguistic prototypes, not verbal SDs Periodic data, not trial-by-trial data Build in more child choice Dynamically inter-leaf adult-led and childinitiated trials by consistently reinforcing lead-taking by child

References: Siegel, B (2003). Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals, New York: Oxford University Press. Siegel, B (1996). The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, New York: Oxford University Press.