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

Overview
Brief Background about Me

Major Challenges in Transitioning from Childhood

to Adulthood

Recommendations
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

Contacting Me
Email: srobertson@ist.psu.edu, srobertson@autisticadvocacy.org

Available on Facebook (search for the Scott Robertson at Penn State who’s
an alumnus of Rensselaer Polytechnic Institute and Carnegie Mellon)
The Autistic Self Advocacy Network
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 autistic
people 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
Major Challenges in Transitioning from
Childhood to Adulthood

Entitlement vs. Civil Rights

Heavily Structured, Rigid System vs. Open System

Centralized Services vs. Segmented Services

Entitlement vs. Civil Rights

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 the

workforce, postsecondary education and other realms

some segmented disability services w/ varying eligibility

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) and adult life
often more variable

Days look very different for all adults

Adult responsibilities for activities of daily living

Adult citizenship responsibilities

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 government

departments (labor and industry, public welfare,
health, etc.)

eligibility determined by each agency

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
Some Definitions of
Self-Advocacy
1. Def.: The Ability to Speak Up for What We Want & Need (Shreiner, 2007)

2. Def.: A Concept & a Set of Skills Associated With 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)
Some More Definitions of
Self-Advocacy
5. Def.: The Ability To: Assertively State Wants, Needs, & Rights; Self-Determine
and Pursue Needed Supports; and Conduct Your Own Affairs (Martin & Hubber-
Marshall, 1995)

6. Def.: The Ability To Communicate With Others To Acquire Information & Recruit
Help In Meeting Personal Goals & Needs (Balcazar, Fawcett, & Seekin (1991)
Self-Determination vs. Self-Advocacy
Self-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)
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

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

1. Knowledge of Self

Strengths and Weaknesses

Preferences

Goals

Dreams and Ambitions

Interests

Learning Style

Support & Accommodation Needs

Responsibilities

Characteristics of One’s Disability/Disabilities

2. Communication Skills

Assertiveness

Negotiation

Articulation

Body Language

Use of Assistive Technology (including augmentative & alt. communication aids)

Listening

Persuasion

Compromise
3. Knowledge of Rights
Personal Rights

Community Rights

Human Service Rights

Consumer Rights

Educational Rights

Steps To Advocate For Change & Address Obstacles

Knowledge of Resources
4. Leadership Skills
Knowledge of Group’s Rights

Advocating for Others & For Causes

Political Action

Team Dynamics & Roles

Knowledge of Resources

Organizational Participation
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
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

Developing Communication Skills

Role Playing and Scenarios

Writing

Public Speaking Presentations

Group Work & Team Work

Personal Reflections, Creative Stories, Poetry, etc.

Interviewing Others
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

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
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)
Selecting a Career Path

Student’s Most Passionate Interests Can Help Select a Career

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

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

Attaining Readiness for Adult Living
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
Citizenship Preparation
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

Maintaining a Positive, Flexible, Open-
Minded Attitude

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 in youth

Prepare them for facing it head on instead of turning away

Questions?