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8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 1/31
Transition from Childhood to Adulthood: Perspectives from
an Autistic Self-Advocate
Researcher Scott Michael Robertson, MHCI
Board Chair, the Autistic Self Advocacy Network
Ph.D. Candidate (ABD), Penn State University
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 2/31
Overview
Brief Background about Me
Major Challenges in Transitioning from
Childhood to Adulthood
Recommendations
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 3/31
Brief Background about Me
Autistic Self-Advocate (experienced in autism and cross-
disability advocacy work)
Leader in many autism and cross-disability
organizations (including the Autistic Self Advocacy
Network)
Autism Researcher @ Penn State (dissertation research
project: cyberbullying/face-to-face bullying victimization of
autistic youth)
Social Scientist/Socio-Technical Science
Improving Self-Determination, Inclusion, and Quality of
Life through Supports, Services, & Technology
Other Roles: Mentoring, Teaching, Family Advocacy
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 4/31
Contacting MeEmail: [email protected], [email protected]
Available on Facebook (search for the Scott Robertson at Penn State
who¶s an alumnus of Rensselaer Polytechnic Institute and Carnegie
Mellon)
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 5/31
National 501(c)(3) nonprofit founded in 2006
Led by autistic self-advocates w/ goal of improving self-
determination, inclusion, and quality of life for all autisticpeople and the greater disability community
Several Initiatives: Disability policy advocacy,
community research, education and training,
information campaigns, support groups, other pursuits
Partner on the Autism NOW: National Autism Resource
and Information Center
http://www.autisticadvocacy.org
The Autistic Self Advocacy Network
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 6/31
Entitlement vs. Civil Rights
Heavily Structured, Rigid System vs. Open
System
Centralized Services vs. Segmented Services
Major Challenges in Transitioning
from Childhood to Adulthood
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 7/31
K-12 Education Entitlement:
mandated public education available for all students
mandated disability services for all qualifying students
(IDEA)
Adult Life Civil Rights:
civil rights for all people
reasonable accommodations for disability challenges in theworkforce, postsecondary education and other realms
some segmented disability services w/ varying eligibility
Entitlement vs. Civil Rights
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 8/31
Structured, Rigid System vs.
Open System
Structured, Rigid System (K-12)
School day from early morning to early afternoon (~6 to 7 1/2 hrs.)
Spend M-F in classes from elementary school through secondary school
School day looks similar for all students
Caretaker model
Open System (Adult Life)
Work day often more variable (depends on job, job site requirements) andadult life often more variable
Days look very different for all adults
Adult responsibilities for activities of daily living
Adult citizenship responsibilities
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 9/31
Centralized Disability Services vs.
Segmented Adult Disability Services
Centralized K-12 Services
provided through school system and
affiliates
eligibility determined by the school system
Segmented Adult Disability Services
provided through various governmentdepartments (labor and industry, public
welfare, health, etc.)
eligibility determined by each agency
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 10/31
Recommendations for Working w/
Postsecondary Transition
Foster Development of Self-Advocacy Skills
(helpful for all aspects of adolescence and
adult life and working through challenges)
Keep the Focus on Major Goals: employment,
adult living, citizenship preparation
Maintain a Positive, Open-Minded, Flexible
Attitude
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 11/31
Some Definitions of
Self-Advocacy
1. Def.: The Ability to Speak Up for WhatWeWant & Need (Shreiner, 2007)
2. Def.: A Concept & a Set of Skills AssociatedWith Self-Determination
(Test, Fowler,Wood, Brewer, & Eddy, 2005)
3. Def.: The Ability To Articulate One¶s Needs & Make Informed Decisions
About Supports Necessary To Meet Those Needs (Stodden, 2000)
4. Def: Understanding & Seeking Support for One¶s Personal Rights (English,
1997)
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 12/31
Some More Definitions
of Self-Advocacy5. Def.: The Ability To: Assertively StateWants, Needs, & Rights; Self-
Determine and Pursue Needed Supports; and Conduct Your Own Affairs
(Martin & Hubber-Marshall, 1995)
6. Def.: The Ability To CommunicateWithOthers To Acquire Information &
Recruit Help In Meeting Personal Goals & Needs (Balcazar, Fawcett, &
Seekin (1991)
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 13/31
Self-Determination vs. Self-AdvocacySelf-Determination is a state in which an individual has a degree of
control over their future and life pathway (also known as self-direction)
Self-Advocacy is the set of skills needed to achieve self-determination
and satisfy one¶s needs and goals
A Self-Advocate is a person who exercises their self-advocacy skills
(and commonly in the cross-disability community it specifically refers
to people with disabilities advocating for their own lives and the lives
of others)
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 14/31
Individualizing Self-Advocacy
Self-Determination and Self-Advocacy for each person in life will look very
differently
The natural of a person¶s uniqueness and their specific disabilities strongly
impacts self-determination and self-advocacy
Age and Maturity also heavily impact self-determination and self-advocacy
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 15/31
4 Components of Self-Advocacy...
Conceptual Framework developed by Test, Fowler, Wood, Brewer, & Eddy
(2005):
1. Knowledge of Self
2. Knowledge of Rights
3. Communication
4. Leadership
They are well-known special education researchers
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 16/31
Str t W
r f r
l
r iti
I t r t
r i St l
Support ommodation ds
Responsi ilities
Char acteristics of One¶s isabilit / isabilities
1. Knowledge of Self
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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2. Communication Skills
Assertiveness
Negotiation
Articulation
Body Language
Use of Assistive Technology (including augmentative & alt. communication
aids)
Listening
Persuasion
Compromise
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 18/31
Personal Rights
Community Rights
Human Service Rights
Consumer Rights
Educational Rights
Steps To Advocate For Change & Address Obstacles
Knowledge of Resources
3. Knowledge of Rights
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Knowledge of Group¶s Rights
Advocating for Others & For Causes
Political Action
Team Dynamics & Roles
Knowledge of Resources
Organizational Participation
4. Leadership Skills
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 20/31
Developing Knowledge of Self
Interviewing Others about you for a Story on You
Disability-Focused Training & Empowerment Programs
Interest & Personality Questionnaires & Surveys
Icebreaking Activities & Group Games
I am...and I have been involved in...
An unusual circumstance that happened for me was...
Something people may not know about me is...
Teaching Others
Visualizing Activities
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 21/31
Developing Knowledge of Rights
Scenarios & Role Playing
Instructional Programs Focused on Learning Specific Disability Laws
i.e. ADA, IDEA, Rehab Act of ¶73, Fair Housing Act, etc.
ex. Learning and Educating about Disabilities Program
Instructional Programs Focused on IEP Rights
Civil Rights Training Programs
Discussions on School/Work Climate
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 22/31
Developing Communication Skills
Role Playing and Scenarios
Writing
Public Speaking Presentations
GroupWork & TeamWork
Personal Reflections, Creative Stories, Poetry, etc.
Interviewing Others
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Developing Leadership Skills
Youth Leadership Participation
Youth Summits
Forums & Conferences
Leading IEP Meetings (Students w/ Disabilities & Gifted Students)
Community Service & Volunteer Work
Organizing Household Activities
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Keeping Focus on Major Goals
Three Major Goals for All Youth:
Selecting a Career Path (that may involve
postsecondary education and training) Attaining Readiness for Adult Living
Preparing for citizenship (including voting)
K-12 instruction should prepare for all of these
Explicit transition focus may not happen until
age 14-16
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Selecting a Career Path
Having career in focus should be the end goal for all
students
They take different paths to get there
postsecondary education
vocational/technical training
jobsite development
For Autistic students, match career w/ the youth¶s
passions (may have to broaden)
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Selecting a Career Path
Student¶s Most Passionate Interests Can Help Select aCareer
May need to broaden breath and depth
May need to shift to related areas
Real-world constraints (job skills, job types, job
availability for a given area)
Work Alongside:
Student¶s Strengths, Talents, Gifts
Student¶s Individual Challenges
Student¶s Life Goals and Values
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Fitting Training/Prep to Career Focus
All jobs will require some form of training
Might be postsecondary education (e.g., 2 yr. or 4 yr.
school)
Might be training program leading to vocational certification
Might be on-the-job training
Determine training path appropriate for combination of student¶s
strengths, challenges, and values/goals
Keep flexibility in mind for later training (that may be different)
College may be beneficial for many but...
Many important jobs do not involve 4 yr. college education
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
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Educate youth about adult responsibilities
through tailored gradual instruction
Focus on all activities of daily living
(maintaining a living space, tracking a
budget, paying bills, etc.)
Recognize interdependence of adult life
Provide some expansive real-world exposure
w/ variability (to enhance generalization)
As feasible, connect to available
services/support systems that assist in being
an included member of the community
Attaining Readiness for Adult Living
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 29/31
Tailored, gradual instruction about adult
citizenship responsibilities
Following ordinances and laws
Respecting others¶ civil rights
Voting in elections
Real-world exposure to civic activities
Modeling and Role Play
Citizenship Preparation
8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011
http://slidepdf.com/reader/full/asan-webinar-with-autism-now-center-february-15-2011 30/31
Will Encounter Much Adversity in Transitioning
Complexities of the Systems
Nature of Life Alongside Disabilities
Challenges Inherent to Adult Life
Better to keep open, optimistic focus and instill this inyouth
Prepare them for facing it head on instead of turning
away
Maintaining a Positive, Flexible, Open-
Minded Attitude