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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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