Transitioning Towards Successful Adulthood for Teenagers Chicago, IL 27-30 May 2008 Presented by

1. Transitioning Towards Successful Adulthood for Teenagers Chicago, IL27-30 May 2008 Presented by Stephen M. Shore, Ed. D. www.autismasperger.net

2. I N T R O D U C T I O N

3. Loss of speech & tantrums AUTISM Environmental withdrawal Self-stims W H O A M I? Introduction — The Past The Autism Bomb

4. W H O A M I? Introduction

5. Typical develop- ment Turn over at 8 days Rapid physical and motor develop-ment Autism bomb hits Withdrawal from environment Tantrums Putnam evaluation of atypical development, strong autistic tendencies & psychotic Early intervention from parents who refute recommendations for removal from home Enter Putnam Condition improves to “neurotic” The wonderful world of watch motors Echolalia and return of speech Eating baby food Kinder- garten Social & academic difficulties Discovered making a mess of myself while eating BBQ chicken wings Loved cats but dogs… Yikes bikes! Cracking rocks Special interests in astronomy and weather Teacher concerns for reading and math difficulties Concern about dropping the letter “e.” My friend says “he feels like a pizza” and I argue with him that he does not look like a pizza and probably does not feel like one either Middle and high school Finally getting it together but still often in left field Discovering the band room Time to focus more on people and not their bicycles AGE 0 1.5 2.5 4 6 8 10 13 19 E V E N T S W H O A M I? Introduction — Adult College More friends Dating Others really do think differently Utopia! Finishing doctoral dissertation on comparative educational approaches for engendering success for people with autism and Asperger Syndrome

6. AREAS TO CONSIDER FOR SUCCESSFUL ADULTHOOD Overview What we are doing now that has implications for adult life Interdependent Living Residential Biomedical Employment Behavioral/Developmental/Educational Relationships (including sexual) Continuing Education Sensory Self-Advocacy and Disclosure

7. NAVIGATING THE SEA OF INTERVENTIONS

8. Educational- Behavioral Sensory Biomedical THE SEA OF INTERVENTIONS Three Areas of Intervention Educational/Behav • DTT/ABA • Daily Life Therapy • TEACCH • Miller Method • DIR (Floortime) • RDI • SCERTS Sensory Occupational Therapy to Treat Imbalances of the Outer and Inner Senses • Sight • Touch • Taste • Smell • Hearing • Vestibular • Proprioception Stephen Edelson, personal communication, December, 2004 Biomedical Treating chemical imbalances caused by internal and external factors • Digestion • Nutrition • Chelation • GFCF Diet • Vaccines • Dysbiosis • Immunology • Feingold Diet • Mercury and other heavy metal toxicities [metallothionein & glutathione]

9. Educational- Behavioral Biomedical Sensory A POSSIBLE INTERVENTION PROFILE Three Areas of Intervention Stephen Edelson, personal communication, December, 2004

10. SOME PROMISING INTERVENTIONS Lovaas (ABA): Watson, Skinner, Operant conditioning, Shaping behaviors, Antecedent-behavior-consequence TEACCH: Employs approaches based on the needs of a person’s needs and emerging capabilities (Trehin, 1999). Daily Life Therapy: Kito Kitihara, Platonic, Order of the physical, emotional and intellectual. Miller Method: Miller,Developmental-Cognitive Systems, Elevation, Piaget, Vygotsky, Luria, Werner, Bertalanffy. DIR (Floortime): Greenspan, Developmental-Affective, Circles of communication. Relational Development Intervention: Gutstein, Experience sharing rather than instrumental relationships. SCERTS:Prizant, Social-Communication, Emotional-Regulation, Transactional Support. Biomedical: Medical-Chemical, Diet (GFCF), Adjusting chemical imbalances, Persistent measles, Heavy metal toxicities. Other: Sensory integration, PECS, Inclusion, Social stories, Power cards, CCT

11. COLLABORATION MODEL FOR SOCIAL INCLUSION IN THE UNITED STATES Nine Domains of Educational Accommodations 1. Size 2. Time 3. Level of Support 4. Input 5. Difficulty 6. Output 7. Participation 8. Alternate 9. Substitute Curriculum Adapted from Adapting Curriculum and Instruction in Inclusive Classrooms: A Teacher's Desk Reference, by Deschenes, C., Ebeling, D., and Sprague, J., 1994.

12. Only hermits live independently INTERDEPENDENT LIVING AND APPROPRIATE HOUSING Along with COMMUNITY INVOLVEMENT

13. AREAS TO CONSIDER FOR SUCCESSFUL ADULTHOOD Residential We ain’t gonna be around forever…. Interdependent Living• Home/Apt. – Roommates? • Degrees of Supervision – Minimal to Live-in Group Living• Shared Home/ Apartment/Institution • Degrees of Supervision – Part to Full-time LeastRestrictiveEnvironmentContinuum

14. WORK? WHERE? WHAT? HOW?

15. R E A L W O R L D O F W O R K Defining Work – Adding Meaning to Life Work is more than just a livelihood or paycheck; it is the key to a satisfying and productive life. For many on the autism spectrum, it is the glue that keeps our lives together in an otherwise frustrating and sometimes confusing world. Certainly, my life would not be worth living if I did not have intellectually satisfying work. Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism,Temple Grandin However…

16. R E A L W O R L D O F W O R K Reality for People on the Autism Spectrum Most adults on the Autism Spectrum are either unemployed or underemployed. Many, if given proper opportunities and training, have skills and abilities that would be valuable in appropriate work settings.

17. OOPS!!!!! WHAT ABOUT SENSORY INTEGRATION ISSUES? R E A L W O R L D O F W O R K Characteristics of Autism – A Reframing A complex developmental disability that typically appears during the first three years of life. Autism Spectrum Disorder results from a neurological condition that affects the functioning of the brain. Social interaction Communication (but no significant clinical delay for AS) Repetitive motions and restricted interests Anything that interferes with the central nervous system getting the needed information from the environment. ASA (2005) DSM IV-TR (2000) Miller (2000) Reframe • Communication • Socialization • Restricted Interests

18. R E A L W O R L D O F W O R K Characteristics of Autism – Confusion and Chaos Overly sensitive to loud noises… Difficulty with hair washing and brushing… Problems with handwriting… Bumps into people in line… Picky eater… Clumsy… Always “on the go”… Difficulty paying attention… Only likes certain types of clothing… Adapted from Myles, Cook, Miller, Rinner & Robbins. (2000). Asperger Syndrome and sensory issues : Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing. P. 5.

19. R E A L W O R L D O F W O R K Gearing Work Towards Interests Interest/strengthImplications for Career Subway maps and computers Design maps for web pages of a public transit authority Horses and medicine Equestrian veterinarian Hypersensitive sense of smell Airplane engine trouble shooter and engineering

20. R E A L W O R L D O F W O R K Determining Career Matches – Possible Employment Structures • Competitive employment • Full-time employment • Part-time employment • Permanent employment • Short-term jobs • Seasonal jobs • Self-employment / Micro-enterprise

21. R E A L W O R L D O F W O R K Matching Needs to Possible Positions Personal CharacteristicsPreferred Job AttributesPossible Positions Deficit in verbal and Few communication Stock shelves nonverbal communication requirements Challenges in socialization Limited contact with public, Filing, sorting, stapling more solitary job duties paper shredding, after-hours cleaning Unusual response to Provider of preferred Hanging clothes, sensory stimulation sensory input, ability to avoid washing cars (for those noxious sensory stimulation enjoying that type of tactile input Difficulty with change Few changes,stable work Small business,family and transition environment,little staff business, assembly turnover, same work task line all day Adapted from Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley.

22. R E A L W O R L D O F W O R K Matching Needs to Possible Positions Personal CharacteristicsPreferred Job AttributesPossible Positions Strong visual-motor skills Requires good visual-motor Small-parts assembly, skills manufacturing, printing Behavior challenges Few antecedents to Situations where challenging behaviors, with behavior doesn’t cause situations where possible dangerous situations; problems don’t endanger avoid factories or jobs others using heavy machinery Savant skills Responsibilities capitalizing Matching stock on these strengths numbers to packing lists, mathematically oriented positions for those with good math skills Adapted from Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley.

23. R E A L W O R L D O F W O R K Matching Needs to Possible Positions Personal CharacteristicsPreferred Job AttributesPossible Positions Rituals and compulsions Attention to detail and Positions with repetitive tasks that must be done with high accuracy,such as counting items to be placed into packages or looking over products for defects Adapted from Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley.

24. R E A L W O R L D O F W O R K The Hidden Curriculum – Peter Gerhardt, 2004 THE HIDDEN CURRICULUM Practical Solutions for Understanding Unstated Rules in Social Situations Brenda Myles Melissa TrautmanRonda Schelvan Autism Asperger Publishing Company Sam Bob http://www.esoterically.net/log/archives/2003_01.html Sam arrives after Bob. What two rules did he break?

25. THE HIDDEN CURRICULUM - INCIDENTAL BOOKS

26. RELATIONSHIPS

27. Rumbling Increased verbal behaviors such as swearing, nonsense noises, unusual changes in vocal volume, or making threats Increased stereotypical behavior such as grimacing, fidgeting, rocking, flapping, tearing paper, or tapping foot Increased movement, including pacing, walking in circles, or leaving the room Verbal behaviors such as screaming Emotional expressions such as explosive impulsiveness and rage at self Physical behaviors such as destroying property, biting, hitting, kicking, and self-injury Rage Recovery Sleeping Denial of rage behaviors and withdrawal into fantasy Apologizing T H E R A G E C Y C L E STAGE COMMON BEHAVIORS Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

28. I M P R O V I N G S E L F – A S S E S S M E N T Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

30. Simulation - Practice Visually Verbally Role-playing

31. Seek… to understand all aspects of the hidden curriculum Observe… what people are doing and NOT doing Listen… to what people are saying and NOT saying Vocalize… questions and check for understanding Educate… teach and learn… knowledge is power

32. Stop… what you are doing in order to… Observe… what people are doing and NOT doing in order to… Deliberate… to determine the next step of… Act… based on the information you now have.

33. S O C I A L S T O R I E S – by Carol Gray Using vignettes to describe how social interactions work employing… Descriptive Sentences: Background of situation Directive Sentences: Suggests action and decode meanings Affirmative Sentences: Suggests commonly shared values or opinions • When the teacher asks a question, many students would like to provide an answer. Descriptive • It’s hard for a teacher to hear when several students try to answer at once. Descriptive • Students in a classroom need to take turns talking. Affirmative • When I want to answer a question that the teacher asks in class, I will try to sit quietly and raise my hand. Directive • The teacher may call on me to answer or the teacher may give another student a turn at answering the question. Descriptive • If the teacher does not call on me this time maybe next time she will ask me to answer her question. Descriptive Adapted from Gray, C. The new social story book. Future Horizons

34. Madeline Teaches Becca How to not Stress Out Remain Calm Power Card Scenario:About 15 minutes into her weekly music lesson, Becca, a 9 year old girl with AS consistently throws herself into a coach crying that she “will never be able to do it” and “that is no use.” After 10 minutes, Becca’s mother calms her down and the lesson continues with a doll named “Madeline”. This behavior occurs during other activities too. Task:Develop a Power Card to address Becca’s tantram. Analysis: Behavior Tantrum 15 minutes into the music lesson Possible cause Lack of ability to sense and handle frustration Motivator: Special Interest/Hero The doll Madeline

35. Madeline wants you to remember to choose one of the following ways to help calm yourself if you get frustrated when you have difficulty answering a question. If one of the ways does not work try another. If you need help to answer the question this time, perhaps next time you can do it all by yourself. 1. Take 5 deep breaths exhaling slowly after each breath. 2. Close your eyes and slowly count backwards from from 10 to 1. 3. Get a hug from Mommy. 4. Take a short break. Madeline Teaches Becca How to not Stress Out Remain Calm Power Card

36. Recovery Teachable Moments Rumbling Rage Teachable Moments THE RAGE CYCLE

37. Rumbling Increased verbal behaviors such as swearing, nonsense noises, unusual changes in vocal volume, or making threats Increased stereotypical behavior such as grimacing, fidgeting, rocking, flapping, tearing paper, or tapping foot Increased movement, including pacing, walking in circles, or leaving the room Verbal behaviors such as screaming Emotional expressions such as explosive impulsiveness and rage at self Physical behaviors such as destroying property, biting, hitting, kicking, and self-injury Rage Recovery Sleeping Denial of rage behaviors and withdrawal into fantasy Apologizing T H E R A G E C Y C L E STAGE COMMON BEHAVIORS Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

38. Rumbling Rage Recovery T H E R A G E C Y C L E STAGE POSSIBLE INTERVENTIONS Antiseptic bouncing Quiet room with work Walk and no talk Keep child, other and possessions safe Keep child, other and possessions safe Keep demands very low Favorite activity Not a time for social autopsies or other discussions of behavior Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

39. Recovery Teachable Moments Rumbling Rage Teachable Moments T H E R A G E C Y C L E Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

40. I M P R O V I N G S E L F – A S S E S S M E N T Adapted from Myles, B., & Southwick, J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Autism Asperger Publishing Company

41. Passerby, Classmate, Coworker, Fellow Commuter Stranger Neighbor Classmate, Coworker Acquaintance Friend Close Neighbor Classmate, Coworker Mom, Dad, Sibling, Other Family --> Significant other Boy/Girlfriend, Fiancé, Spouse R E L A T I O N S H I P S Circle of Relationships Develop a social narrative

42. R E L A T I O N S H I P S Talking About Sex - Myths of Sexuality - Peter Gerhardt But the Truth is… • Persons with autism are as diverse sexually as everyone else - and, sexuality education is complicated by challenges in language, communication, and social differences. While sexual feelings and interest may be high, a primary information source is usually not available – non-spectrum teens (Volkmar & Wiesner, 2003). - With proper support people with autism can have relationships; often with a person having a difference. Common Myths • Persons with autism… - have little to no interest in sex - are hypersexual - are solely heterosexual So… How can we help people on the autism spectrum deal with this important part of life?

43. R E L A T I O N S H I P S Talking About Sex - Jerry Newport How? Sex is a normal yet a very private act and is clean. • Discuss in a developmentally appropriate manner - Find the balance between not too much and not too little • Make sure you understand the question(s) being asked • Explain in a matter of fact manner Why? People find out about sex anyways from classmates, mass media, books, etc.

44. R E L A T I O N S H I P S Talking About Sex - Masturbation - Peter Gerhardt Redirecting Inappropriate Masturbation Interrupt the behavior as early in the chain as possible Remind the individual as to the parameters of time and place Redirect the person to… A. activities requiring the use of both hands B. activities requiring preferred levels of attention, focus, or physical movement C. the appropriate place for that activity Make the alternate activity intrinsically reinforcing Consider scheduling “alone time” in their room if appropriate Avoid redirection to places other than an individual’s bedroom (e.g. bathroom)

45. R E L A T I O N S H I P S Talking About Sex – Resources Aston, M., The other half of Asperger Syndrome. Hénault, I., Asperger’s Syndrome and sexuality: From adolescence through adulthood. Lawson, W., Sex, sexuality and the autism spectrum. Mesibov, G., The TEACCH approach to autism spectrum disorders. Newport, J. & Newport, M., Autism-Asperger’s and sexuality: Puberty and beyond. Shore, S., & Rastelli, L., Understanding autism for dummies. Sicile-Kira, C., Autism spectrum disorders: The complete guide to understanding autism, Asperger’s Syndrome, pervasive developmental disorders, and others ASDs. Wrobel, M., Taking care of myself: A hygiene, puberty, and personal curriculum for young people with autism.

46. SELF-ADVOCACY & DISCLOSURE

47. The road to successful self- advocacy starts by accurately assessing your circumstances.

48. S E L F - A D V O C A C Y D E F I N E D Self-advocacy involves knowing when and how to approach others in order to negotiate desired goals, and in order to build better mutual understanding, fulfillment, and productivity. Successful self-advocacy often involves an amount of disclosure about oneself that carries some degree of risk, in order to reach a subsequent goal of better mutual understanding.

49. W H E N T O T E L L … The Twin Challenges of Disclosure and Self-Advocacy The issue of disclosure begins… …As soon as it is known that a person has a difference in their way of being WHY?

50. W H Y T O T E L L … The Twin Challenges of Disclosure and Self-Advocacy REALITY CHECK Most people are busy with living Most people are not in the mindset ofaccommodating people with differences