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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.

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l ifelong learning the autism spectrum my growth through adolescence adulthood

Lifelong 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
My Contact Information
my favorite quote
My Favorite Quote

“Energy and persistence conquer all things.”

— Benjamin Franklin

overview
Overview
  • My Background
  • How Experiences Leads To Growth
  • My Experiences & Lifelong Learning
my background multiple hats
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
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
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
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
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
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
Experience & Growth

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

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

“Conversation is an art in which man has all mankind for competitors.”

–Ralph Waldo Emerson

my social experience elementary school years
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
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
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
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
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
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
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: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
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
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
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
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
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
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
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
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
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
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
  • "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
My Traveling(Abroad & Domestically)
  • Exchange Trip to France
  • Post-secondary School Traveling
exchange trip to france
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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 information1
My Contact Information
recommended resources social relationships friendships
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
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
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 friendships1
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
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
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
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