L ifelong Learning & The Autism Spectrum: My Growth Through Adolescence & Adulthood Scott Michael Robertson Ph.D. Candidate, Penn State University The Autistic Self-Advocacy Network March 16, 2007

My Contact Information Questions are always encouraged & very welcome Instant Messaging: AIM: hppalm MSN: YIM: psuresearcher Google Talk (Jabber): Website: Telephone: available upon request

My Favorite Quote Energy and persistence conquer all things. Benjamin Franklin

Overview My Background How Experiences Leads To Growth My Experiences & Lifelong Learning

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

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

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

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: ASANs 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

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

Side Note Ill be giving the opening keynote Penn States 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 (Online registration in late spring/early summer)

Experience & Growth Ive never let my school interfere with my learning. Mark Twain

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

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

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

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

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)

My Social Experience: Secondary School Years No friends Best friend & I lost touch Didnt 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

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)

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: District policy on bullying Mentor/buddy pairing

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

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

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

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

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.

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

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)

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

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

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

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

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

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

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)

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

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

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.

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.

Challenges: Exchange Trip (2) Academic Requirements Missed one week of school Completed missed assignments during trip My Differences (Being Autistic) Knew about challenges Didnt know how to advocate for assistance Didnt know about autism yet

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

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

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

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

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

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

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

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

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

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

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

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.

Advocating For Others Needs: My Influences Paying it forward for those who had helped me over the years Understanding myself & meaning in my life Fun Enjoyable experience to help others Higher self-esteem

The Autistic Self-Advocacy Network (ASAN) Started by autistic adults in 2006 Collaborative effort autistic individuals, parents, educators, professionals, etc. Primary Initiatives: Educational Support Transition to post-secondary education K12 & Postsecondary education support Social/Support Groups & Mentoring Public Policy & Advising Speakers Bureau Website:

My Contact Information Questions are always encouraged & very welcome Instant Messaging: AIM: hppalm MSN: YIM: psuresearcher Google Talk (Jabber): Telephone: available upon request

Recommended Resources: Social Relationships/Friendships McAfee, J. (2001), Navigating the Social World: A Curriculum For Individuals with Asperger Syndrome, High Functioning Autism, and Related Disorders Lawson, W. (2006), Friendships: The Aspie Way Gabor, D. (2001), How To Start A Conversation And Make Friends Canfield, J., Hansen, M. V., Reber, D. (2005): Chicken Soup For The Teenage Soul: The Real Deal Friends Grandin, T. & Barron, S. (2005), The Unwritten Rules of Social Relationships

Recommended Resources: Assertiveness & Self-Advocacy Yoshida, Y. (2006), How To Be Yourself In A World Thats Different: An Asperger Syndrome Study Guide for Adolescents Palmer, P. (2000), Teen Esteem: A Self-Direction Manual For Young Adults Joyner Hayne et al. (2004), Ask And Tell: Self- Advocacy and Disclosure for People On The Autism Spectrum Murray, D. (2005), Coming Out Asperger: Diagnosis, Disclosure, And Self-Confidence

Recommended Resources: Anti-Bullying Strategies Myles, B. & Heinrichs, R. (2003), Perfect Targets: Asperger Syndrome & Bullying Dubin, N. (2007), Asperger Syndrome & Bullying: Strategies & Solutions Grey, C. (2004), Greys Guide to Bullying Field, E. M. (2007), Bully Blocking

Recommended Resources: Social Relationships/Friendships McAfee, J. (2001), Navigating the Social World: A Curriculum For Individuals with Asperger Syndrome, High Functioning Autism, and Related Disorders Lawson, W. (2006), Friendships: The Aspie Way Gabor, D. (2001), How To Start A Conversation And Make Friends Canfield, J., Hansen, M. V., Reber, D. (2005): Chicken Soup For The Teenage Soul: The Real Deal Friends Grandin, T. & Barron, S. (2005), The Unwritten Rules of Social Relationships

Recommended Resources: Acting & Nonverbal Comm. Schneider, C. (2007), Acting Antics Davies, A. (2004), Teaching Aspergers Students Social Skills Through Acting Nowicki, S., & Duke, M. (2002), Will I Ever Fit In? The Breakthrough Program For Conquering Adult Dyssemia

Recommended Resources: Traveling Autism, Aspergers Syndrome & International Exchange: What, Why, & How Debbaudt, D. (2001), Autism & Airport Travel Safety Tips