Joanne M Cafiero, Ph.D. cafierocommunications drcafiero@cafierocommunications

1. Unlocking the Potential for Individuals with ASD: The AAC SolutionsHITMesse, 2008Nyborg, DenmarkSeptember 9, 2008 Joanne M Cafiero, Ph.D. www.cafierocommunications.com drcafiero@cafierocommunications.com

2. What we will discuss today: • Autism Spectrum Disorders: Science, Myth, and Belief Systems • Cognition • Motor Planning • Affective Issues • Evidence-Based & Promising Practices in AAC and ASD • Implications for Practice: Case Studies • Assessments • Interventions • Importance of Action Research

3. Dramatic increase in incidence: Fact or myth? • Combating Autism Act 2006 & other funding factors • DSM-IV definition is more inclusive • Impact of technology • Cultural Implications - Reframing Autism • 3rd World Cultures - social support • Seen as positive or negative

4. Autism and Mental Retardation(Edelson, 2006) • Autism and Intelligence Timeline • Reviewed 215 articles (1937-2003) • 74% of claims non-empirical sources • 53% of 74% not traced to any data • Empirical data was from developmental or adaptive scores rather than cognitive scores • Language based • Unanswered questions considered wrong

5. Autism and Motor Planning • Atypical “Reach to Grasp” Movements • (Mari et.al, 2003) • Atypical Movement Preparation • (Rhinehart et.al. 2005) • Impaired Motoric Preparation & Initiation • (Rhinehart, Bellgrove, et.al., 2006) • Impaired Movement Toward Goal • (Vernazza-Martin, et. Al., 2006)

6. Autism and Motor Planning • Motor Delays, difficulty in executing movements, exacerbated by stress • Bauman, (1992) • Persistence of newborn reflexes, stiffening when held, stereotypies • (Mari et.al, 2003) • Parkinsonian movements • (Vilensky, 1981) • Failure to use gestures in communication • (Mari et. Al., 2003)

7. Mari, Castiello, Marks, Marraffa, and Prior (2003) • “On the basis of evidence [regarding motor deficits], it can be suggested that differences in reach to grasp patterning…confirms dysfunctioning ability to initiate, switch, efficiently perform or continue any ongoing actions including those involved with communicating, interacting socially or performing useful daily activities.”

8. Conclusions of Researchers in ASD and Motor Skills • Motor disturbances are intrinsic to autism. • Early motor “soft signs” may indicate autism. • Shift in focus to movement perspective may inform practice and intervention.

9. Autism and Co morbidity with Affective Disorders • Oppositional-Defiant Disorder • Obsessive-Compulsive Disorder • Anxiety Disorder • Psychosis • Selective Mutism

10. Communication Patterns in ASD • 50% with no functional language • Limited to requesting and refusing • Inconsistent patterns of language expression • Unique developmental sequences • Symbolic language (speech or sign) sometimes emerging in adolescence • Different rather than deficient

11. What is AAC? • Enhances, supports existing communication • Replaces aberrant or absent communication • Includes Unaided; manual signs, gestures, facial expressions, body language • Aided: picture symbols, tangible objects, print (email) etc.

12. Myths about AAC and Autism • AAC will inhibit or preempt the development of speech. • AAC is not needed if an individual with ASD has speech. • If AAC is provided to an individual with ASD, he/she will use it. • If a student is provided with an AAC and does not use it within a certain time frame he/she will never use it. • No and low-tech are better options for people with ASD.

13. Basic Principles of AAC for People with ASD • No pre-requisites • Communication partner is key • Augmented Input. • Shape, reinforce, reflect do not correct using AAC. • Assume communicative potential • Honor existing functional, appropriate communication • Remember communication is multi-modal • Don’t give up!

14. The Concept of “Least Dangerous Assumption”(Anne Donnellan, 1984) “In the absence of absolute evidence, it is essential to make the assumption that, if proven to be false, would be the least dangerous to the individual…The absence of evidence can never be absolute evidence of absence, and as such, it is always safest to make the least dangerous assumption.”

15. Feedback from the Autism Self-Advocacy Movement • Fluent AAC users who started with FC • Extinguishing behaviors = extinguishing communication • “Movement Inertia” • www.neurodiversity.com • “Real-Time Speech” (2005, Smith)

16. More Feedback from Autism Self-Advocacy Movement “I like my keyboard. I spent my whole life struggling with speech, and I like to have an alternative means of communication. I feel more comfortable with the keyboard because it does not involve the painful and complicated process of speech in addition to language…” (A. Baggs)

17. What is Real-Time Speech?(Smith, 2005, Autreat) • Requires common language • Requires turn taking • Relies on good working memory • Requires rapid responses • Requires multiple cue responding

18. AAC User, First Person Account:(Smith, 2005) • Need communication partners to acknowledge turn to communicate. • Flat surface is required for device. • AAC is slower than speech. • Misunderstandings are more common.

19. Practitioner Belief Systems and Implementation of AAC Supports What is a Belief System? • Mindset, world view and perspective • Internal and pervasive • Generalizes to many/most situations • Based on and limited by experience • Based on and limited by knowledge of research • Guides actions, decisions

20. Belief Systems about Autism and Communication • People with autism have nothing to communicate. • People with autism will only communicate what they want. • People with autism communicate the same scripts over and over. • Many people with autism are too “low functioning”or cognitively disabled to communicate. • You must first get a student’s behaviors under control before you can teach them to communicate. • It is easier to set up the environment to anticipate the needs of people with autism rather than make them communicate.

21. Method • Administration of Teacher Belief System questionnaire. • Coding of specific classroom variables Classroom Environment Checklist. • Scored each instrument. • Correlated beliefs with actual practitioner behaviors.

22. Teacher Belief Systems Questionnaire • 5 point Likert Scale (strongly agree to strongly disagree) • Beliefs concerning • Cognitive potential • Communicative potential • Types of appropriate instruction • Use of age appropriate materials • Optimal teaching environments • Functional vs. academic curriculum • Importance of behavior management

23. Classroom Environment Checklist • 5 point Likert Scale • Environmental Engineering; AAC use • Literacy • Down time • Communication opportunities • Behavioral issues • Choices for students • Adapted curricula • Electronic media • Functional academics

24. Communication Beliefs: • They do not understand what others are saying. • They have no interest in communicating. • If they have not learned to communicate within ____ time frame, they will never learn.

27. Results: • Teachers who scored their students as “most cognitively disabled” and having the “least communicative potential” had: • Minimal adapted literature • Limited engineered opportunities for communication • Minimal differentiated instruction • Rote curricular activities • More “down time” • More behavioral difficulties

28. Working with the Teacher with the “low functioning” belief system • Listen actively; don’t be “the expert” • Cite research. • Model a lesson. • Find the AAC tool or strategy with biggest payoff for the least effort. • Intervene with the most teacher-reinforcing student.

29. In light of what is not known about ASD, practitioners must make the least harmful assumptions regarding the communicative potential of individuals with ASD.

30. What are the Top 20 Autism Treatments in US? • Interactive Autism Network (www.IANproject.org) • Collaboration of Kennedy Krieger and Autism Speaks • Data from 14K families

31. Top 20 Autism Treatments 1. Speech and language 2. OT 3. ABA 4. PECS (PCS?) 5. Social Skills Groups 6. Visual Schedules 7. Sensory Integration Therapy 8. Physical Therapy

32. Top 20 Autism Treatments 10. Social Stories 11. Casein free diets 12. Risperdal 13. Weighted vests 14. Omega 3 fatty acids 15. Melatonin 16. Probiotics 17. Floortime 18. Prayer 19. Discrete Trial Training 20. Music Therapy

33. What does Evidence-Based Practice in AAC Mean? • Conscientious, explicit, and judicious use of current evidence in making decisions about the education of each child. • Integrated with individual clinical expertise • With the best available external clinical evidence from systematic research • And considering stakeholders’ preferences

34. Are the results meaningful? (The difference between clinically significant and clinically meaningful)

35. What are the key issues in AAC and ASD? • Are AAC interventions effective in teaching communication to individuals with ASD? • Do AAC interventions inhibit speech? • Are graphic symbols or manual signs more effective? • How does a practitioner select an AAC tool? • No-tech, low tech or high tech

36. What we DO know… • Individuals with ASD can learn to use aided and unaided AAC for requesting and choice making. • Individuals with ASD can learn to use aided or unaided AAC to escape undesirable situations. • Individuals with ASD can learn to use aided AAC and concurrently increase speech. • Non-speaking is not a fixed condition.

37. What we DO know… • Progress in adopting manual signs as a functional communication system is dependent upon fine motor abilities • Progress in acquiring speech with both aided and unaided AAC is dependent upon verbal imitation skills • Progress in using AAC functionally is dependent upon the commitment and competence of the communication partner.

38. Aided & Unaided AAC (Millar, Light & Schlosser, 2006, Mirenda, 2006) • Unaided - Manual Signs • Requires good fine motor abilities • Unlimited vocabulary • Portable • Not readily comprehensible • Aided - SGDs, communication boards, keyboards, paper and pencil • requires lower fine motor skills • more readily comprehensible • not portable

39. Both aided and unaided AAC predominantlypromoteand do not inhibit speech.(and there is NO research indicating one is superior to the other) (Mirenda, 2005; Millar, Light and Schlosser, 2006)

40. Autism and Aided AAC: What are Evidence-based practices? • Functional Communication Training • Augmented Input Strategies (SAL, NAL, ALgS) • PECS (Bondy & Frost) • Activity Schedules (Krantz & McClannahan) • Speech Generating Devices

41. Evidence-based Practice: FCT with Aided AAC • Functional Communication Training • PCS, objects, SGDs, Ideographs • Views all behavior as communicative • Replaces aberrant behavior with communication • Must be efficient, acceptable and recognizable • FCT produced “immediate, substantial and sustained” decreases in aberrant behavior (Mirenda, 1998) • Treatment outcomes “effective and highly effective” • (Wendt, Schlosser & Lloyd, 2005)

42. Evidence-based Practice: PECS • Systematic sequential protocols • Exchange a symbol for a desired item • Expressive communication only • Acknowledges communication partner • Approximately 1/2 children developed speech • “Fairly effective” strategy (Wendt, Schlosser &Lloyd, 2005)

43. Evidence-based practice: SGDs • Low-tech (1 - 32 cells, single & multi-level) • High-tech • Summons attention of communication partners • Model for speech • Used alone or with other aided AAC • Augmented input model (SAL, Romski & Sevcik, 1996, 2006) • Highly effective

44. Evidence-based practice: Augmented Input Strategies • Communication partner essential • Receptive language training (INPUT) • AAC viewed as legitimate language • Mother-tongue method • Natural Aided Language, System for Augmenting Language, Visual Routines • Effective in increasing spontaneous speech and augmented communication & decreasing aberrant behaviors (Cafiero, 1995, 2001, 2005; Dexter, 1998, Acheson, 2006,Romski & Sevcik, 2008).

45. Evidence Based Practice: Literacy In AAC • Students with ASD can: • Develop emergent literacy skills through graphic symbol adapted literacy (gSAL) • Develop concept of word with gSAL • Use more speech when reading gSal increases time on task when using gSAL. • Can learn functional language through gSAL • Can learn tasks through gSAL

46. Pre-school StudyRomski & Sevcik (2006) • 3 groups of 20 toddlers (12 with ASD) • Randomly placed in one of three groups • Parent training in stimulating speech • Group 1- no AAC, speech supports only • Group 2 - aided AAC, focus on comprehension (input) • Group 3 - aided AAC (augmented input) focus on input and child’s output

47. Romski & Sevcik Toddler Study: Groups 1 and 2 • Group 1: Speech Supports Only • At 9 weeks: 25% increase in use of speech • At 12 weeks: 20% maintenance of speech skills • Group 2: AAC for Input • At 9 weeks: 100% increase in use of symbols; 45% increase in use of speech • At 12 weeks: 95% maintenance of symbol use; 60% use of speech

48. Romski & Sevcik Toddler Study: Group 3: AAC for Input and Output At 9 weeks 100% use of graphic symbols 65% use of speech At 12 weeks 100% maintenance of graphic symbols 65% maintenance of speech

49. Research is sorely needed: • How to teach sharing information and commenting • How to teach expressing feelings and emotions • How to express the subtleties of social interactions • Impact of early early AAC on language development • Impact of early literacy on language and social development • The production of “spontaneous novel utterance generation” • The augmented input strategies

50. Research-Based Best Practices in ASD: Contemporary ABA • Incidental Teaching: ABA (McGee) • Practitioner stimulates engagement from child interest • Pre-linguistic Milieu Teaching (Yoder & Stone, 2006) • Pivotal Response Teaching: ABA (Koegel & Koegel) • Shared control, child interests, attempts reinforced, • New skills mixed with mastered skills