Success in Choosing Higher Education… and Staying there For People on the Autism Spectrum

1. Success in Choosing Higher Education… and Staying there For People on the Autism Spectrum Massachusetts Institute of Technology Cambridge, MA May 16-20, 2009 Stephen M. Shore, Ed. D. www.autismasperger.net

2. INTRODUCTION AND A LITTLE BIT ABOUT ME

3. Loss of speech & tantrums AUTISM Environmental withdrawal Self-stims A L I T T L E B I T A B O U T M E Introduction The Autism Bomb

4. OOPS!!!!! WHAT ABOUT SENSORY INTEGRATION ISSUES? W H A T I S A U T I S M ? 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

5. • Fluorescent lights • Chirping birds • Ticking clocks Sight • Haircuts Hearing Tactile Vestibular (Inner ear) Proprioceptive (Muscles & joints) • Kissing Dad - Coffee and beard Smell Taste • Bland foods Vestibular:Hypo —> Spinning/Hyper —> Gravitational Insecurity Proprioceptive:Deep pressure, Under mattresses, Weighted blankets Love airplanes but they mess w/Vest & Prop senses Brave little kids I N N E R A N D O U T E R S E N S E S S E N S O R Y V I O L A T I O N S

6. 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 A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — Adult College More friends Dating Others really do think differently Utopia! Paradigm shift from being advocated for to advocating for one’s self Professor of Special Education at Adelphi University

7. CHARACTERISTICS OF CHILDREN WITH AUTISM SPECTRUM CONDITIONS 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.

8. THE AUTISM SPECTRUM

9. Increasing Variability of Presentation T H E A U T I S M S P E C T R U M Severe Moderate Light Kanner’s PDD-NOS HFA/AS Rosenn, D. (1997). “Rosenn wedge”. From Aspergers: What we have learned in the ‘90s conference in Westboro, MA. Used with permission T w i c e E x c e p t i o n a l i t y

10. SELF-ADVOCACY FOR PEOPLE WITH AUTISM

11. 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.

12. DEVELOPING A SELF-ADVOCACY PLAN

13. SCAN Challenge What is causing the difficulty? ADVOCACY Explaining your needs …promoting greater understanding and in a way the other can provide assistance DISCLOSURE The reason Partial – Note specific characteristic affecting a situation only Full – Diagnosis MY ADVOCACY PLAN Name ____________________ SCAN: Where is the challenge? 1. Sensory 2. Cognitive 3. Socio-emotional ADVOCACY: DISCLOSURE: Perception of the environment How we think Social cues and how we feel Explaining your needs Giving the reason why

14. SCAN Challenge ADVOCACY Explaining your needs DISCLOSURE The reason MY ADVOCACY PLAN Name ____________________ Sensory Fluorescent lights Partial – I have sensitive eyes Ask instructor to change lighting Cognitive Remembering verbal instruction Partial – I remember things better when I write them down Request instructor for written instructions Socio-emotional Decoding jokes Partial – I take things very literally Ask for fellow students to tell you when they make a joke

15. INCIDENTAL HIDDEN CURRICULUM RESOURCES

16. S U C C E S S W I T H A S P E R G E R’ S

17. SUCCESS IN HIGHER EDUCATION FOR PEOPLE ON THE AUTISM SPECTRUM

18. DON’T LET THIS HAPPEN… • Special Education is ALL DONE!! • I want to be just like EVERYONE ELSE • OOPS!!!!!! • Well… • Maybe I DO need to find the Office of Student Support Paradigm Shift From Being Advocated for to Self-Advocacy

19. A.S. Univ INSTITUTIONAL RESPONSIBILITIES High School College • Provide those deemed in need of special education a customized education according to their needs in order to level the playing field. •IndividualswithDisabilities Education Act • Provide equal access to educational programs, services, facilities & activities • Provide reasonable accommodations, academic adjustments and/or auxiliary aids & services • Maintain student confidentiality • Written policies & procedures (including grievance) in alternative format • Americanswith DisabilitiesAct/504

20. A.S. Univ T R A N S I T I O N High School College • 5-6 hours/day of classes • 1-2 hrs/day HW • Frequent quizzes, non-cumulative tests • Teaching content from textbooks • 25-20 students/classroom • One building • 4-5 classes each 3-4 hours/wk • 2 hrs/day/class hour HW • 2-3 cumulative exams/semester • Research, primary sources • 10-300 students • Entire campus

21. A.S. Univ T R A N S I T I O N Commuter? PROs CONs • Dependency issues • Stigma, self-esteem • Commuting details (drive, mass transit) • Limit testing • Socially isolated • Less challenging? • Supervision & monitoring • Existing support services • Smoother transition • Reduce stress • Less worry? • Less financial risk

22. A.S. Univ T R A N S I T I O N Residential? Pointers • Size matters and smaller is not automatically better • Investigate housing options carefully • Disclosure issues • To meddle or not to meddle • Know thy roommate

23. A.S. Univ T R A N S I T I O N Tools • Start now • Work on self-advocacy & life skills • Listen, support & assist • Remember who’s the boss now • Call/visit/question everywhere • Documentation & policies • Transition/orientation programs • Build a team • Start now!!!

24. A Guide to the Individualized Education Program. Office of Special Education Programs. 16 June 2002. <http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/> Self-Initiated IndividualEducationPlan (Cont.) Who must we get on board? • Student - Student’s Guide to the IEP - Helping Students Develop Their IEP www.nichcy.org • Parents • Special Education Teacher • Regular Education Teacher(s) • Administrators • Others

25. A.S. Univ M a k i n g C o l l e g e R i g h t M A J O R K E Y——>S U P P O R T Interconnection is Vital Family Friends School Other

26. A.S Univ Social • Friends - Parties - Appropriateness Organization Living • Aides - Carbon-based - Silicon-based • Dorm? • Home? - Single? Coursework • Part time? • Full time? • Accommodations? SOME STEPS FOR A SUCCESSFUL COLLEGE EXPERIENCE

27. A.S. Univ Looking For The Right College (Cont.) • Preparation • • Documentation… • - Appropriate • - Recent • - Suggestions for reasonable accommodation • Issues to consider • • Is assistance needed with… • - Academic Accommodations • - Independent Living Skills • Questions that need answering • • Where is the office of student support? • - What is needed to obtain accommodations? • - Are they friendly? • - Do they know what AS is? • - Knowledgeable? • - Willing to learn?

28. Name: Any StudentSchool: Any State College Counselor: Unnamed SomebodyDate:August 15, 2009 Challenge Cause Suggested Accommodation Taking tests with multiple questions per page. Unable to concentrate under fluorescent lights. Scheduling long term assignments. M a k i n g C o l l e g e R i g h t (Cont.) A C C O M M O D A T I O N S W O R K S H E E T Visually over stimulating, gets lost in all the words. 1. Only one question per page. 2. Two sheets of paper to cover distracting verbiage. Perception of 60Hz cycling due to visual sensitivity Explore alternate lighting, sit next to window, wear baseball cap in class. Poor executive function. Regularly meet with professor (perhaps once a week) to keep on target with lengthy assignments.

29. A.S. Univ M a k i n g C o l l e g e R i g h t (Cont.) REALITY CHECK(Lorraine Wolf) Colleges are in the business of education College are not rehabilitative institutions

30. W H A T M I G H T B E L I K E T O H A V E A D I S A B I L I T Y I N A C O L L E G E C L A S S R O O M ? Let us find out...

31. D I S A B I L I T Y I N T H E C L A S S R O O M • Now… Let’s tell a story in a round-robin fashion • Instructions: • All you need to do is relate your sentence to the previous person’s sentence. Adapted from: Lavoie, R. (1989). Understanding Learning Disabilities: How difficult can this be? (Videotape) Greenwich, CT: Peter Rosen Productions.

32. D I S A B I L I T Y I N T H E C L A S S R O O M • Now… Let’s tell a story in a round-robin fashion again EXCEPT • • This time… no words can contain the letter “n” • - No “n” at the beginning, middle, or end Adapted from: Lavoie, R. (1989). Understanding Learning Disabilities: How difficult can this be? (Videotape) Greenwich, CT: Peter Rosen Productions.

33. IN CLOSING…

34. S U C C E S S W I T H A S P E R G E R’ S Definition If you are productive and fulfilled with your life you are probably successful It’s all in the journey You are exactly where you need to be right now

35. www.autismasperger.net