l ifelong learning & the autism spectrum: my growth through adolescence & adulthood
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L ifelong Learning & The Autism Spectrum: My Growth Through Adolescence & Adulthood. March 16, 2007. Scott Michael Robertson Ph.D. Candidate, Penn State University [email protected] The Autistic Self-Advocacy Network http://www.autisticadvocacy.org. My Contact Information. - PowerPoint PPT PresentationTRANSCRIPT
Lifelong Learning & The Autism Spectrum:My Growth Through Adolescence & Adulthood
Scott Michael Robertson
Ph.D. Candidate, Penn State University
The Autistic Self-Advocacy Network
http://www.autisticadvocacy.org
March 16, 2007
My Contact Information
Questions are always encouraged & very welcome Email: [email protected] Instant Messaging:
AIM: hppalm MSN: [email protected] YIM: psuresearcher Google Talk (Jabber): [email protected]
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: [email protected] Instant Messaging:
AIM: hppalm MSN: [email protected] YIM: psuresearcher Google Talk (Jabber): [email protected]
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