Bryna Siegel, Ph.D. Adj. Professor & Director, Autism Clinic

1. Autistic Spectrum Disorders: Linking Assessment & Educational PlanningCalifornia Association of School PsychologistsLos Angeles, CAMarch 10, 2007 Bryna Siegel, Ph.D. Adj. Professor & Director, Autism Clinic University of Calif., San Francisco San Francisco, Calif. 94143-0984 bryna.siegel@ucsf.edu

2. Defining the Issues • What Does “Autistic Spectrum” Imply? • Seeing the “Spectrum” as a Collection of Autism-Specific Learning Weaknesses and Relative Strengths • What is a Developmental-Behavioral Approach? • Teaching/ Treating Developmentally • And…Teaching/Treating Behaviorally • And…Getting the Child to Want to Learn

3. Autistic Spectrum Disorders are a Syndrome—Like a Cold • It’s Multi-Factorial (It’s Poly-Genetic) • If Everybody’s Autism is Different Everybody’s Treatment Needs to be Different

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

5. 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

6. 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

7. What’s Inside the World of the Autistic Spectrum Child? • Imagine the world of a blind child by closing your eyes. • Imagine the world of a deaf child by putting hands tightly over your ears. How do you imagine autism?

8. The Child with ASD Perceives Differently Sensory Threshold & Modulation Problems: Audition: Covers Ears Appears Deaf Tactile: Clothes Sensitivities Diminished Pain Response Visual: Gaze Avoidance Visual Scrutiny Olfactory: Pica Gags at Smells

9. The Child with ASD Processes Differently • Sensory threshold differences lead to misrepresentation of inputs • Processing speed delays lead to loss of information • What you get = what you can ‘think’ (perceive plus process) ‘Swiss cheese’ understanding

10. The Child with ASD Stores Differently • ‘Constructive’ memory borrows from more fully represented data sources • Retention is probably better where comprehension is better

11. The Challenges: • How do alterations in the way a child with autism perceives, processes, stores, and retrieves information create an altered world view? • How can these alterations be regarded as a cluster of ‘autistic learning disabilities’ (ALDs) so specific symptoms point to specific treatments?

12. How Do We Start to Recognize ASDs? • Early Screening with the PDDST-II • Specific Qualities of an Early Childhood Screener • Screening vs Diagnosis • Diagnostic Best Practices

13. PDDST-IIPervasive Developmental Disorders Screening Test-II (Siegel, 2004, Psych Corp/ Harcourt) Three Stages of Screening • Primary Care Screener (PDDST-II/PCS) • Developmental Clinic Screener (PDDST-II/ DCS) • Autism Clinic Severity Screener (PDDST-II/ACSS)

14. Who Can Use the PDDST-II? Stage I- PCS: Primary care providers such as pediatricians and family practitioner What Question Does It Answer? “Should this child be referred from my primary care practice to a developmental specialist? Should I mention concerns about autism?”

15. Who Can Use the PDDST-II? Stage II-DCS: Any clinician or teacher involved in special education or DDS intake/ any trans-disciplinary team member/ SLPs/ OTs What Question Does It Answer? “We know this child has some sort of developmental problem. Should we include autism-specific measures in our work-up?”

16. Who Can Use the PDDST-II? Stage III-ACSS: Specialty clinic where information is sought regarding likely longer-term severity What Question Does It Answer? “The parents have been told the child has an ASD. They want to know ‘how bad’ it is going to be. Can I give a data-based ‘guess-timate’?”

17. Administering the PDDST-II • The PDDST-II detects concerns around 15 m. of age • Each question is: ‘Yes, Usually True’ or ‘No, Usually Not True’. • If score  cut score: Use Glossary, as needed to validate responses. • If validated, refer for further assessment.

18. Scoring the PDDST-II • Allow parent to self-administer (5-10 minutes). • Teacher can independent fill in own version. • Teacher may also want to administer Supplemental Items (Pgs. 40-41) from Manual for further description. • Score items by reviewing Glossary (if needed) and tallying total/ Refer a ‘positive’ case for further assessment.

19. Components of the PDDST-II Kit • Separate scoring forms for Stage I, Stage II, Stage III • PDDST-II Manual: • Explains psychometrics • Supplemental Items add to description (& Se, but Sp—if added to screening algorithms, would Sp) • Provides Glossary with Qualities, Thresholds, and Probes for each item at each stage. • Supplemental Items for more full clinical description

20. How the PDDST-II Glossary Works: Qualities: “What does this behavior look like compared to what is expected Threshold: “Is this behavior so marked as to be qualitatively or quantitatively abnormal?” Probe: Specific questions the clinician can ask to elicited targeted information about item.

21. The PDDST-II: Comparison to Other Screeners • CHAT: Norms: Identifies autism—and other severe DD; needs interview follow-up. • CARS: Norms: Children > 5, most screening < 5; score w/ MR and NV. • GARS: Norms: Self-diagnosed sample, low specificity, over-includes other DD.

22. Working to Develop Evidence-Based Practice

23. How Do You Judge A Treatment’s Efficacy? Tiers of Evidence

24. Making Treatment Decisions:The Difficult Issues • Determining the Validity of Treatment Approaches from the Studies Backing It • Weighing Qualitatively Different Kinds of Evidence • Weighing Evidence from Different Theoretical Perspectives

25. Making Autism Treatment Decisions: Tiers of Evidence BEST: EMPIRICAL STUDIES OF GROUPS • Matched groups • Representative samples • Sufficient sample sizes • Pre- and post-testing • Longitudinal outcome data • Assessment of responder characteristics

26. Making Autism Treatment Decisions: Tiers of Evidence NEXT BEST: THEORY on the Brain, Behavior, Social Policy Child Development Theory and Research • On Typical Development • On Learning Disabilities & Mental Retardation Behavioral Theory and Research Social Policy Guided Treatment Decisions

27. Making Autism Treatment Decisions: Tiers of Evidence NEXT BEST: CLINICAL EXPERIENCE • Autism-Specific Expertise • Experience with More than One Method • Developmental Disability Expertise • Special Education Expertise • Child Development Expertise

28. Issues in Recognizing Quality

29. National Research Council:Effective Interventions for Autism: I Program Design • Intensity: # Hours/ Week? # Interactions? # Correct Responses? • An Early Start (ideally before 30 months) • Direct Instruction/ Highly Structured • Teacher-Therapist Training/ Supervision • Parent Training/ Involvement

30. National Research Council:Effective Interventions for Autism: II Curriculum Content • Developmental Appropriateness • Opportunities for Functional Use • Language Emphasis

31. ‘Smell’ Tests: Treatment Validity, Fidelity & Consistency Face Validity: • Does this treatment make sense? Fidelity: • True to the model that had good results? Consistency of Implementation: • Is this treatment what it once was?

32. The Big Dilemma in Designing Autism Treatment If no two children have the same exact needs, how can they benefit from the exact same treatment? If each child gets a different treatment how do we learn what’s best?

33. Understanding Responder Characteristics What is A ‘Responder Characteristic?’ • Specific ‘Autistic Learning Disabilities’ • Developmental Level • Language Level • Maladaptive Behaviors

34. Upon What Do We Base Practice? • We need to treat, even if we don’t have all the empirical studies. • We need to have ‘Best Practice’ guidelines based on evidence, theory, and experience. • We need to know if what we do helps as much as we hope it does.

35. The ALD/ALS Approach: A New Heuristic ALD =‘Autistic Learning Disabilities’ ALS = ‘Autistic Learning Styles’ The Concepts of ASDs and ALSs can be used to classify autistic alterations in Perception, Cognition, Information-Processing, Motivation and Expression

36. Qualitative Impairments in Social Interaction Qualitative Impairments in Communication Restricted, Repetitive & Stereotyped Patterns of Behavior, Interests, or Activities Social Autistic Learning Disabilities Communicative Autistic Learning Disabilities Non-Social Autistic Learning Disabilities Mapping DSM Criteria for Autism onto Autistic Learning Disability Profile

37. HowSocial 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

38. How Non-Verbal Communication Deficits Affect Learning Low comprehension of facial cues such as: Smiles of Encouragement Gaze toward topic of conversation Ignores gestures that should be the ‘first’ language such as: Warnings or Displeasure Tone of voice to mark meaning

39. How Verbal CommunicationDeficits Affect Learning Receptive language Signal:noise problem for verbal ‘signal’ -H: ’Noisy’ social-linguistic field -H: Limitations to pure memory ‘buffer’ Language processing with poor ‘parsing’ Expressive language Without ‘theory of mind’, no drive to ‘share’ ideas Oral-motor apraxia synergistic w/ low expressive drive

40. How Play and Exploration Deficits Affect Learning Lack of imagination in play= No consolidation of experience via play linking action and language No symbolic actions 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’

41. What Is the Developmental-Behavioral Approach? APPLYING THE ALD/ ALS MODEL • Determine ALD/ALS Profile (ALD-I) • Establish curriculum content based on developmental level/ ‘what comes next’. • Uses behavioral methodology to teach developmentally-based curriculum. • Enhancing motivation by differentially rewarding self-initiative in learning

42. Step I: Develop An ALD-Specific Treatment Plan 1)What’s the child missing (ALDs)? 2) What compensatory strategies (ALSs) can provide needed inputs and information? 3) How do you match ALDs and ALSs to available treatments?

43. The Autism Learning Disabilities Inventory (ALD-I, Siegel, 2003) MECHANICS Questionnaire 3 Point Frequency Scale Parent or Teacher Completed 7 Scales Social Scales Awareness Reciprocity Imitation Communication Scales Receptive Para-linguistics Expressive Paralinguistics Receptive Oral Language Spoken Oral Language World of Objects Sensory Processing Repetitions/ Novelty Response Play

44. ALD-ISocial ALDSAwareness and Social Motive • Acts as if in own little world. • Foremost motivation is usually to please self. • More readily learns things that result in meeting own needs. • Fails to notice certain things that others this age usually notice.

45. ALD-I Social ALDSImitation and Affiliative Drive • Apparent lack of concern about the effect of his behavior on others. • Uninterested in trying to do new things just to earn approval of others. • Does not seem to be motivated to copy actions or attitudes of others. • Does not readily learn by being shown by others; must figure it out on own. • Low level of interest in peers

46. ALD-ICommunication ALDsReceptive Gesture & Body Language • Doesn’t look to where something is pointed out. • Doesn’t look back after seeing something to see if you’ve seen it, too. • Stops an action when receiving a stern look. + • Knows that a nod of the head ‘yes’ means that what s/he’s doing is OK. +

47. ALD-ICommunication ALDsExpressive Gesture & Body Language • Doesn’t points with index finger at things he wants. • …or that are interesting, but not wanted. • Doesn’t smiles when someone smiles at him. • Doesn’t looks happy if others act happy. • Can’t clearly read ‘guilt’ on child’s face. • Can’t tell when child feels proud of actions.

48. ALD-I Communication ALDsUse of Spoken Language • Echoes some of your speech to show you he’s ‘with’ the conversation. • Uses echolalic (exact, repeated speech) to re-enact play from videos. • Uses odd, not-quite-right, but understandable phrasing in speech.

49. ALD-IALDs- World of ObjectsSensory Processing • Seems not to hear (not just ignores) some sounds/ speech. • Seem over-sensitive to some sounds, as too loud. • Very positive response to movement • Very negative about tactile irritations • Puts non-food items in mouth, as if to learn • Picky about textures in mouth (& what is chewed or swallowed.

50. ALD-IALDs-World of ObjectsRepetitions/ Novelty • Prefers old familiar toys to new toys. • Initially fearful of something he now loves, e.g., vacuum, carousel. • Once something is done one way, it’s always done the same way. • Has odd little rituals—like only drinking from one cup, for no reason. • Very focused in play with one thing, showing good concentration.