Lifelong Learning & The Autism Spectrum:My Growth Through Adolescence & Adulthood

Scott Michael Robertson

Ph.D. Candidate, Penn State University

srobertson@ist.psu.edu

The Autistic Self-Advocacy Network

http://www.autisticadvocacy.org

March 16, 2007

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

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: 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

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

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)

Experience & Growth

“I’ve 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 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

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: http://www.bullypolice.org/pa_law.html

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. 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)

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 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)

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 Didn’t know how to advocate for assistance Didn’t 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 Friend’s 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 Speaker’s Bureau

Website: http://www.autisticadvocacy.org

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

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 That’s 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), Grey’s 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 Asperger’s

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, Asperger’s Syndrome & International Exchange: What, Why, & How”

http://www.miusa.org/ncde/tipsheets/autismtips/ Debbaudt, D. (2001), “Autism & Airport Travel

Safety Tips” http://urlcut.com/autismairportsafety