ASAN Webinar with Autism NOW Center February 15, 2011

8/7/2019 ASAN Webinar with Autism NOW Center February 15, 2011

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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 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)



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



Entitlement vs. Civil Rights

Heavily Structured, Rigid System vs. Open

System

Centralized Services vs. Segmented Services

Major Challenges in Transitioning

from Childhood to Adulthood



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



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



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



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 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)



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)



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)



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



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



2. Communication Skills

Assertiveness

Negotiation

Articulation

Body Language

Use of Assistive Technology (including augmentative & alt. communication

aids)

Listening

Persuasion

Compromise



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



Knowledge of Group¶s Rights

Advocating for Others & For Causes

Political Action

Team Dynamics & Roles

Knowledge of Resources

Organizational Participation

4. Leadership Skills



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

GroupWork & TeamWork

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 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



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



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



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



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



Questions?

Documents

ASAN Webinar with Autism NOW Center February 15, 2011