ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)

    ASA Homepage
Friday, July 14, 2006: 3:30 PM-4:45 PM
Ballroom C
#2114- Self-Advocacy for Teens and Young Adults with Autism
• Self-advocacy is an important part of self-determination. Teens and young adults need to learn to advocate for themselves as they prepare to enter the post-high school world of work or college. The presenters have been involved in a five year project of co-facilitating a self-advocacy group that started as an activity within a school district and is now a part of the Autism Society of Collin County. It is expanding to the newly reorganized Dallas Chapter.

Presenters:Kathy Kelchner, M.Ed., Kelchner Educational Consultants, LLC, Educational Consultant - Kathy Kelchner is an Educational Consultant with over 25 years of experience as a special educator including two years as a Project Director for The Arc’s National Headquarters Self-Determination Projects in which Kathy co-authored The Arc’s Self-Determination Assessment Scale and Whose Future Is It Anyway. Kathy is the co-author of Golden Ideas for Golden Students. Kathy is currently leading the effort to reorganize the Autism Society of Dallas. Kathy's sister had autism and recently lost her battle with a rare neurological disease. Kathy’s curriculum vita a list of professional presentations is available at

Ken Kellam III, B.S., Advocate - • Ken Kellam, III works as a job coach for adults with autism at the Autism Treatment Center in Dallas and volunteers in the community. He serves as a host for numerous web based interest groups. Ken was diagnosed with Asperger syndrome less than 10 years ago. Ken serves on the Board of Directors of the Autism Society of Collin County and co-facilitates the self-advocacy group. Ken spoke at the Texas State Conference on Autism with Mark and Kathy and speaks throughout the region on self-advocacy and living life on the autism spectrum.

Mark Sachnik, B.S., C.T.P., Buyer UTD and Advocate - • Mark Sachnik is buyer for the University of Texas at Dallas and serves as the First Vice-President of the Autism Society of Collin County. Mark has been co-facilitating a self-advocacy group for teens and adults with autism for over 5 years. Mark is an avid bike rider and participates in many bike races throughout Texas. Mark has had numerous speaking opportunities at the Texas State Conference on Autism and throughout the region related to self-advocacy and living life with autism. Mark has known about his autism for most of his life and he lives a full independent life.

Self-Advocacy Movement •Self-Advocacy movement = disabilities rights movement •Self-Advocacy started as a civil rights movement by people with disabilities •People with disabilities rebelled against being: –underestimated –deprived of choices –treated like eternal children –thought to lead lesser lives •Self-Advocacy and Self-Determination grew out of Bengt Nirje's “normalization principle: –“making available to people (with mental retardation) the patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.” Nirje, 1976

Normalization Principle •Opportunities to: –have choices, wishes and desires considered and respected –experience a normal rhythm of the day –experience a normal routine of life; work, leisure, home in same settings used by people without disabilities –Experience the normal rhythm of the year with celebration of holidays and opportunities for vacation and travel –encounter the normal developmental experiences of the life cycle •learning about abilities and potential •understanding oneself •building one's self confidence •to move away from home •to live as independently as possible

Self-Determination •“acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life free from undue external influence or interference” Wehmeyer, 1992

• “the ultimate goal of education” Halloran, 1993

• “Disability is a natural part of the human experience and in no way diminishes the rights of individuals to live independently, enjoy self-determination, make choices, contribute to society, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural and educational mainstream of American society.” PL 102-569 1992 Amendments to Rehabilitation Act

Essential Characteristics of Self-Determined Behavior 1. The individual acts autonomously 2. The behaviors were self-regulated 3. The person initiated and responded to event(s) in a “psychologically empowered” manner 4. The person acted in a self-realizing manner

Autonomy Behavior is autonomous if the person acts: 1. According to his or her own preferences, interests, and/or abilities 2. Independently, free from undue external influence or interference

Autonomous •Self- and family care activities –personal care –meal preparations –care of possessions –household chores –shopping –home repairs

•Self-management activities –interactions with environment –use of community resources to fulfill personal obligations •post office •stores and restaurants •keeping appointments •Recreational activities –the degree to which an individual uses personal preferences and interest to choose to engage in such activities

• Social and vocational activities – degree to which personal preference and interest are applied in these areas (Sigafoos, Feinstein, Damond and Reiss, 1988)

Self-Regulation • Individuals with disabilities need to become the causal agents in their lives • Self-Management Strategies – self-monitoring – self-instruction – self-evaluation – self-reinforcement • Goal setting and attainment • problem-solving behaviors

Psychological Empowerment • People who act in a psychologically empowered manner believe: – They have control over circumstances that are important to them – they posses skills to achieve the desired outcome – choose to apply those skills • A person must have the ability to make effective decisions and belief (attitude) that (s)he can achieve the outcomes

Self-Realizing • Understanding and knowledge of self: – strengths and challenges – abilities and limitations • Acting in a manner to capitalize on this understanding and knowledge

Self-Determination: Component Elements • Choice making • Decision making • Problem solving • Goal setting and attainment • Self-observation, evaluation, and reinforcement • Internal locus of control • Positive attribution of efficacy and outcome expectancy • Self-awareness • Self-knowledge

Barriers to Self-Determination for people with disabilities • Too few opportunities to learn skills to acquire component elements • limited access to experiences in which to apply the skills • expectations and perceptions held by other toward people with disabilities limit opportunities

Self-Determination for people with disabilities • People with disabilities can acquire the component elements of self-determination when: – provided with adequate learning opportunities and opportunities – provided with opportunities to apply the learning

Promoting Self-Determination • Examine your role in the individual's life o where are you assuming more control than need be? o how many ways are you trying to elicit the individual's preferences? o what can you do to provide more experiences of control? o what can you do to provide choice making opportunities? • Build self-awareness and self-confidence o recognition and identification of needs o how to meet these needs o communication of interests, beliefs and values o accept individual differences o how to handle frustration and stress • Choice and Decision-making o systematic instruction on making choices o acquiring information through observation o identifying alternatives, recognizing consequences o locating resources o setting realistic, achievable goals o self-advocacy skills

What is a Self-Advocacy Group? A group of people with a common interest who get together periodically to learn: • About themselves o Their gifts o Their challenges o Their disability and what it means • Appreciate their uniqueness • They are not alone • Support each other • Possibly gain some new friends • To advocate for themselves

Who should you include? Some people will argue that you should not segregate the people with autism from others with disabilities that all people with disabilities need to learn self-advocacy skills. We agree that all people with and without disabilities need to learn self-advocacy skills. This will be an individual decision for your group. The students who have attended our group have told us that they have faced much ridicule and have been called “retarded” and have been bullied so they may be reluctant to talk about all of their concerns in a diverse group. The advantage to a disability specific group such as teens and adults with autism: • The focus is on autism and the implications and effects of the condition o Self-advocates are more likely to ask questions or offer frank discussion about their concerns • Districts can consider it for an alternative for in-home training

Who Should Facilitate? A person who: • Has knowledge of autism • Believes people with autism can become self-determined and self-advocates • Appreciates the gifts and unique abilities of people with autism • Enjoys the company of people with autism • Has a sense of humor • Has high expectations for people with autism • Has respect for people with autism • Is willing to work with a person with autism as a co-facilitator for the group • A person with autism as a co-facilitator because that person brings a personal perspective that no one else has

How Often? As often as your schedule will allow – we meet once per month during the school year.

What do you do? • Have an agenda • Have a set of rules Meeting Rules • Listen to each other • Take turns talking • One person talks at a time • We are here to encourage each other so say nice things only! • Food is great (Remember, a large majority of people with autism are males and we are talking about teens and young adults so food gets their attention.) • Introductions • A planned activity • Time to socialize o Allow the self-advocates to bring items of interest

Resources for Meeting Activities I Am Special by Peter Vermeulen What Does It Mean To Me by Catherine Faherty Skillstreaming by Ellen McGinnis and Arnold Goldstein

See more of The ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006)