L ifelong Learning & The Autism Spectrum: My Growth Through Adolescence & Adulthood

1. Lifelong Learning & The Autism Spectrum:My Growth Through Adolescence & Adulthood March 16, 2007 Scott Michael Robertson Ph.D. Candidate, Penn State University srobertson@ist.psu.edu The Autistic Self-Advocacy Network http://www.autisticadvocacy.org

2. My Contact Information • Questions are always encouraged & very welcome • Email: srobertson@ist.psu.edu • Instant Messaging: • AIM: hppalm • MSN: srobertson@ist.psu.edu • YIM: psuresearcher • Google Talk (Jabber): aspiegeek@gmail.com • Website: http://www.autisticadvocacy.org • Telephone: available upon request

3. My Favorite Quote “Energy and persistence conquer all things.” — Benjamin Franklin

4. Overview • My Background • How Experiences Leads To Growth • My Experiences & Lifelong Learning

5. My Background: Multiple Hats • 26 year-old Adult on the Autism Spectrum • Ph.D. student at Penn State University • Self-Advocate for the autism community • A Son

6. Multiple Hats: Autistic Adult • Self-diagnosed in 1999 • Minds & Machines course • Mindblindness (Simon Baron-Cohen, 1997) • Clinically diagnosed in 2005 • Penn State psychological clinic

7. Multiple Hats: Ph.D. Student • Program: information sciences & technology • Research focus: use of information technology to empower advocacy & educational efforts for neurologically diverse populations & their communities • Thesis research: how online IT can support educational & advocacy efforts for the autism community

8. Multiple Hats: Self-Advocate • The Autistic Self-Advocacy Network (ASAN) • nonprofit advocacy organization founded in 2006 • Focus: increasing understanding, acceptance, & support for all autistic individuals • Me: ASAN’s Pennsylvania Regional Director & Vice President • Speaker • autism conferences • organizations, groups, classes, & seminars • Teacher • taught computer programming, writing, and social skills to autistic adolescents & young adults (summer program, Pittsburgh) • volunteered for autistic support high school class (Pittsburgh) • educational consulting

9. Multiple Hats: A Son • Youngest of 3 • Sister: special educator in Washington D.C. • Brother: web developer in NYC • Grew up in northern NJ • Pines Lake community of a town called Wayne • Born in same hospital as baseball player Derek Jeter • Parents: huge influence on my life • own a second-generation family business in Pompton Lakes, NJ

10. Side Note • I’ll be giving the opening keynote speech @ Penn State’s National Autism Conference this summer 2007 • Happy Valley (aka State College, PA) • Monday, July 30 from 9 to 10:30 am • Five-day Conference runs from July 30 to August 3 • Free registration for Pennsylvania parents of individuals on the autism spectrum • http://www.outreach.psu.edu/programs/Autism/National/ • (Online registration in late spring/early summer)

11. Experience & Growth “I’ve never let my school interfere with my learning.” — Mark Twain

12. Learning • Classroom • Explicitly defined skills • Ex. arithmetic, geometry, reading, writing • Explicitly defined knowledge • Ex. history of U.S., planets in the solar system • Situational • Implicitly defined (or less explicitly) skills • Ex. socializing at school/work, flying to another city • Implicitly defined (or less explicitly) knowledge • Ex. social norms (for eating in public), hallway conversation topics

13. Experiences: Learning for Life • Always having experiences throughout life • Always changing • Experiences influence You • Shape your identity, personality, knowledge • Empower your learning for the future • You influence your experiences • You (identity, personality, knowledge) shape what happens • Your past learning empowers future action

14. Experiences & Growth:Adolescence Thru Adulthood • My Social Experiences • Elementary school • Secondary school • Friendships & Social Relationships • Traveling (Abroad & Domestically) • College Living • Self-Advocacy

15. Conversations “Conversation is an art in which man has all mankind for competitors.” –Ralph Waldo Emerson

16. My Social Experience:Elementary School Years • Had Friendships • 1 Best friend • Two other friends • Bullied by peers • 2nd Thru 5th Grades • Taunted, Threatened, Called names, Pushed around • Bullied by gym instructor • Yelled & screamed for inability to perform (dyspraxia)

17. My Social Experience:Secondary School Years • No friends • Best friend & I lost touch • Didn’t know how to make friends • Overwhelming Environment • Confusing Navigation (hallways) • Sensory overload • Worse Bullying (6th Grade) • Tormented me daily • Led to: • Hating school • Deepening depression

18. My Social Experience:Secondary School (Cont.) • Transferred to private school for 7th grade • Less bullying, teasing • Calmer, more accepting environment • Still no friendships • School acquaintances • Stayed home most of time • Reading, Computer Games, TV, etc. • Yearbook (Social outlet)

19. Solutions: Bullying • Teaching assertiveness skills • General assertiveness & understanding of nonverbal communication • Anti-bullying strategies for autistic children & teens (Myles & Smith, 2003; Dubin, 2007; Gray, 2004) • Encouraging anti-bullying policy • State laws on bullying (no law in PA yet) • Proposed law: http://www.bullypolice.org/pa_law.html • District policy on bullying • Mentor/buddy pairing

20. Solutions: Social Exclusion • Promote environment of acceptance • Encourage school board to introduce diversity understanding (esp. neurological) into curriculum • Encourage teachers to promote diversity • Establish social support & mentoring • Mixed autistic & non-autistic social group • Autistic-only social group • Peer mentors for autistic students • Pen-pals for autistic students • Augment w/ volunteering & club activities • Volunteering opportunities w/ local community • Clubs at school & around community

21. Friendships “Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one.’” — C.S. Lewis

22. Friendships:My Experience Thru The Years • Best friend & friends in elementary school • No friends in secondary school • Except for school acquaintances • Friends in college+

23. Friendships:Elementary vs. Secondary • Friendships in elementary school • Focus: shared play • Conversation only while playing (mostly) • Small to Moderate emphasis on comm. skills • Small emphasis on interpersonal skills • Friendships in secondary school • Focus: shared feelings/beliefs, shared time, common interests, personalities, social norms • Conversations w/ & outside of activities • Large emphasis on comm. skills • Moderate to Large emphasis on interpersonal skills

24. Friendships:My Post-secondary Experience • Peers changed in college • More mature & accepting of differences • “Cool to be smart” in college • Social environment changed in college • Many more social outlets • Sports, activities & events on campus, dorm life • Flexibility of time & location • Many clubs to fit an interest • Joined newspaper as reporter (sophomore yr.) • Stayed on as editor & reporter for 3 yrs.

25. My Social Network (Current) • Undergraduate friends • Student newspaper • Class • Graduate school friends • Penn State & Carnegie Mellon • Autism advocacy • Online friends • Autism communities & mailing lists • Secondary school & elementary friends • Back in touch w/ peers I used to know • Connected w/ former teachers

26. Friendships: A Two-way Street • Autistic student learns social skills • Communication skills • Initiation, reciprocation, topic expansion, etc. • Interpersonal skills • Concept of friendship, listening, interest in other, trust, conflict resolution, respect & concern • Environmental accommodation • Physical (including sensory) • Social (peers, adults, others)

27. Learning Friendship • Practice & model w/ same age peers • Peers understand their social world best • Include non-autistic peers in practice • Take perspective of the specific social world • Social conventions differ for age levels • Social conventions differ by place & culture • Provide mentoring • Encourage seeking social advice & guidance • Promote mentoring reciprocation

28. Communication Skills • Procedural Conversation Skills • Initiation of conversation • Responding • Topic expansion & shifting • Turn-taking • Content • Vocabulary words • Literal meaning • Figurative meaning • Contextual use of vocabulary

29. Interpersonal Skills • Much more abstract, less tangible • Personality & identity influences • Not as easily defined or represented • Essential to social relationships • Friendship attractiveness • Employment • Some Key Interpersonal Skills: • Concept of friendship (& social relationship) • Interest in other & POV • Conflict Resolution • Trust

30. Interpersonal Skills (1) • Understanding Concept of Friendship • Common interests & hobbies • Shared time + feelings, ideas, dreams, etc. • 1-10 Scale (level of social relationship) • Listening to Other’s POV & Needs • Actively listening to what’s said • Showing interest in other person • Conversational equilibrium (approx. 50/50 control)

31. Interpersonal Skills (2) • Conflict Resolution • “I” statements • Active Listening • Compromise • Development of Trust • Time & Interactions: >Trust • Openness, honesty, loyalty • Benefit of doubt

32. Interpersonal Skills (3) • Respect & Concern • Respect for other’s differences • Concern for safety & well-being of other • Compliments • Respect for boundaries • Assertiveness • Nonverbal Communication • Expressive (output) & Receptive (input) • 70-90 % of face-to-face communication & phone • Less for electronic comm. (ex. email, IM)

33. Understanding Nonverbal Comm. • Games & Activities • Charades, Miming, acting games (Davies, 2004; Schneider, 2007) • TV Shows & Movies (audio-visual) • Watching w/ sound turned off • Listening but looking away from picture • Recordings (audio) • Comedy shows • Songs & Show tunes (Singing to music/clips) • Radio shows & podcasts • Lines & Groups (audio-visual) • Observing others’ facial expressions & body language • Artwork, Photographs, & Drawings (visual)

34. Travel • "Travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living." — Miriam Beard

35. My Traveling(Abroad & Domestically) • Exchange Trip to France • Post-secondary School Traveling

36. Exchange Trip to France • 3-Week trip • 1 week in Tours, France (adjusting to culture) • 2 weeks w/ host family in Paris • Attended classes w/ host student • Lived & ate w/ host family • Visited sites w/ H.S. peers from U.S.

37. Challenges: Exchange Trip • Foreign Language • Not a native speaker • Trip Speaking Expectations • First Week: Some French & Some English • Second Week: Mostly French • Third Week: Entirely French • Foreign Culture • Different conventions, customs from U.S.

38. Challenges: Exchange Trip (2) • Academic Requirements • Missed one week of school • Completed missed assignments during trip • My Differences (Being Autistic) • Knew about challenges • Didn’t know how to advocate for assistance • Didn’t know about autism yet

39. Growth: Exchange Trip • Strengthened interdependence skills • Preparation for college life • Living away from parents • Expanded perspective • Understanding of differences in living • Diversity of social-cultural experiences & POV

40. Postsecondary School Traveling • Buses, Trains, & Planes • Buses (since ’99) • Trains (since ’02) • Planes (since ’02) • Planning & Packing • Easier when done systematically w/ checklists • Review trip days in advance • Pack days in advance & night before • Social constraints to trip planning

41. College “I learned three important things in college: 1) to use a library, 2) to memorize quickly and visually, & 3) to drop asleep at any time given a horizontal surface and fifteen minutes.” —Agnes DeMilles

42. My College Living Experience • Undergraduate Years • Dorm room w/ roommate (4 yrs.) • Dining hall for food • Shared living experience (RA, floormates, etc.) • Graduate School Years • Apartment w/ no roommate (4 yrs.) • Eating on campus, around town, at apt. • Individualized living experience

43. College Living: Fun • Undergraduate Years • Newspaper (3 years) • reporter & section editor (news, features, contributing) • Concerts & Sports • Graduate School Years • Friend’s parties & get-togethers • Weekly Bar excursion (sometimes) • Dinner w/ friends • Other activities

44. College Living: Academics • Extra time on tests (& separate room) • less anxiety, less need to panic • there whether I needed it or not • Extra notes • No autism-specific support • No social support • No support for navigating life on the autism spectrum

45. College Life: Challenges & Growth • Challenges • Learning to become interdependent • Becoming comfortable w/ the social world • Finding my career & life path • Growth • Focused my path • Gained understanding of myself & identity • Gradually learned subtleties of social life • Ongoing process

46. Advocacy & Life “I am only one, but still I am one. I cannot do everything, but still I can do something; And because I cannot do everything I will not refuse to do the something that I can do.” — Helen Keller

47. Self-Advocacy • Disclosure of neurological difference • Autism Spectrum • Other Co-occurring conditions • Anxiety, Depression, Epilepsy, Dyspraxia, Learning Disabilities, Panic Disorder, etc. • Advocating for your unique needs • Advocating for others’ needs • Your experiences & knowledge=guidance

48. Disclosure • Benefits • Reduce misunderstandings & misperceptions • Strengthen social connection & bond • Challenges • Potential discrimination based on difference • Protections from ADA • Taking advantage of weaknesses

49. Disclosure Thru My Lifespan • Pre-school & Elementary School Years + 6th • Parents advocated & disclosed when needed • Not developmentally able to advocate for my own needs • Private School Years (7th-12th) • Parents did not disclose (fear of discrimination) • Undergraduate Years • I disclosed for my own academic needs • I gradually learned to disclose to friends • Graduate Years • I disclosed more readily to friends & co-workers • I moved toward becoming public about being autistic

50. Advocating For Your Needs • Must understand individual needs • All individuals on autism spectrum have: • Common needs • Individualized needs • Can learn advocacy through practice • K-12 • Attending your IEP meetings • Directing IEP meetings in H.S.