By Ann Millan-
Many individuals on the autism spectrum express their self-determination and self-advocacy through inappropriate behavior; i.e., wild running, stomping off, screaming, stemming, etc. As a young child, our daughter, Robin, was a very determined self-advocate . . . "I want what I want when I want it." For family peace, Robin had trained us well in getting what she wanted!
Behavior and awareness were our goals in Robin's early years. She started the Feingold diet (no food colorings or perseverates) and that definitely helped control her wild screaming and running. At ten years old, a speech therapist helped me institute a consistent and structured Positive Behavior Modification (PBM) program. This was the beginning of Robin's breakthrough as she began to developed language, appropriate behavior, and academic skills, with me as her guide. Robin loved the charts and reward system. Admittedly, I can be a very dramatic person. Robin was motivated by my dramatic, expressive responses and her 'rewards.' Professionals in Robin's life, at the time, were very encouraged with this progress and our ability to communicate.
In addition to education and therapies, Robin's goals expanded to 'self-image and socialization.' Keeping the PBM reward system, Robin joined a local majorette corps and a 4-H club. Robin was so proud of her majorette uniform. She carried the main corps banner, with another girl, down the street ahead of the baton twirlers. Parades were weekly during season and practice twice a week. She advanced through corps ranks and seven years later was twirling batons. In 4-H, workbooks and presentations were required for all projects. Within the same seven years, Robin advanced through 4-H and became a '4-H All Star.' All of this was with my consistent motivation and guided participation for success.
After graduating from high school with a Certificate of Attendance, keeping Robin motivated was my biggest challenge. She no longer had the teenage activities she'd learned to love. We moved to Florida and vocational testing deemed she was unemployable. Robin was depressed and quickly falling back into her 'autism world.' Professionals warned me of 'regression' in adulthood and, admittedly, I was very scared this was becoming a reality. Once again, I took charge. I found her a job, started a social group, and she joined our church choir. I was determined she was not going to regress . . . not on my watch!
Moving forward twenty years, I can now look back at Robin's successful life and say my focus has really been self-determination and self-advocacy. In my opinion, appropriate self-determination for a person on the autism spectrum comes before self-advocacy.
We live in Florida. The leaders of our developmental disability community encourage individuals with developmental disabilities, including autism, to be as independent as possible. As Robin's mother, I was part of this movement. My husband, Bob, and I talked to Robin about her future. Just what did she want? Bottom line, I needed to 'allow' Robin to be her own person. In other words, I had to 'let go and let God.' Having said this, I did not turn my back on Robin and wish her well. She needed me now more than ever to make this a positive transition for her.
Robin wanted her own place and to live by herself, just like her sisters. I knew she could not survive a roommate, much less a group home. She had no interest in developing friendships. She could not express her wants and needs to anyone other than Bob and myself. I made the leap to move Robin forward, admittedly, feeling insecure and overwhelmed.
In adulthood, Robin started receiving speech therapy and had a companion through Medicaid state services with the goal of independent living. Language was impossible for Robin, except to her family. In spite of this, she got a job bagging groceries and Bob became her job coach. All she had to say to people was, 'plastic or paper.' She learned to walk to work, eventually riding a bicycle. I started teaching her how to handle her pay checks. She spent her own money. Later, in speech therapy, she started several programs (1) Interactive Metronome Therapy (IM) to increase her processing time and mental organization and (2) Relationship Development Intervention (RDI) to incorporate her splintered skills into positive developmental growth; i.e., static skills into a dynamic life. In addition, Robin started the gluten-free casein-free diet with vitamins and supplements. Robin was excited and motivated. She wanted all of this. I knew my biggest challenge was going to be the diet. Remembering the PBM reward system, I promised Robin if she would stay on the diet, I would try and help her get her driver's license.
Robin and I had a plan! We were moving forward. Within two years, Robin had her driver's license, was living in her own condo, and was promoted to cashier. Since then, she has developed friendships, including a boy friend, and she has a second job at our local YMCA as a membership receptionist. Robin is very self-determined. She has succeeded with the support system that works for her.
Self-Advocacy: 'Speaking up for yourself about the rights and responsibilities in your life.'
Robin has difficulty with sentence structure and vocabulary, which is improving with her weekly speech therapy. It was an accomplishment to get her to say 'plastic or paper' when bagging groceries, much less speak up for herself. In addition to Robin's language issues, she lacked the self-confidence to express herself with acquaintances, much less strangers. She would much rather I do her talking. If I'm not with her, the response to everyone has always been, "I'll ask my mother."
The Relationship Development Intervention (RDI) program taught me how to brake this cycle. Bob and I learned the definition and importance of guided participation and how to help Robin progress through their developmental sequencing for social development. With the guidance of Robin's speech therapist, Robin has blossomed into a dynamic young lady who is eager to greet people and engage in appropriate small talk. (I wish this type of program had been available when she was a child. This process would have been much easier.)
As I am writing this article, Robin's current RDI objective is: 'You know how to discuss differing opinions without turning them into arguments.' With some of Robin's friends, I am going to start a debate team type activity where each person researches and presents their position on specific topics. This should be fun and help Robin realize she has the right to express her own opinions safely and appropriately.
In the meantime, Robin's hours were cut this week in her job as cashier. Her speech therapist and I role played how to ask for more hours. Robin called me after work telling me her hours were going to be increased. She was so excited she had done this herself. . . . Robin's true self-advocacy is a work in progress!
Ann Millan is the author of Autism: Believe in the Future, from Infancy to Independence. She has been a disability advocate for forty years, working with parents and professionals on the federal, state, and local level. Ann knows firsthand the importance of self-confidence and determination to make the right decisions for your child. She lives with her husband, Bob, in Florida. They have three girls; the third has autism. You can read more about Ann, Robin and Bob's story at their website: www.autism-believe-future.com
Ann also does a weekly video segment on AUTISM BRAINSTORM called: Bridging the Gap Between Autism and Aspergers, with co-host Anita Lesko. Ann and Anita will explore ways to focus on the abilities rather than challenges in autism and aspergers and intend to demystify the labels that have been here-to-fore attached to ASD.