Self-Determination and Quality of Life

By Amy Goodman, Co-Director of Autism Now

Self-Determination starts with having the attitude that I can survive in this world. That I don’t have to conform to just one point of view and that I can manage and do it my way. It may take some time to adjust to the conventional ways of the world, but with the right supports individuals on the autism spectrum can have a life of their own, a career, and be happy as well.

It took a lot of work to get to where I am today but because I was able to self-advocate and take some risks, I now have a career and a life of my own.

It wasn’t until I was diagnosed with Asperger’s syndrome that I really understood who I was and where I fit into society. I was floundering like a fish out of water. I had no clue why I was the way I am until I finally found what I had so desperately been seeking for more than 25 years. The answer to what is wrong with me or why am I different than everybody else? The answer is there is nothing wrong with me, I just perceive the world in a different way and have some odd ways of dealing with the overwhelming sensations that I find hard to tolerate at times. Once I realized what it was that was giving me so much anxiety and self-worthlessness, I was able to embrace it. The depression and feeling of being in a cloud with no air went away. I was able to see myself in a whole new light.

The first thing I was able to do was educate myself about autism and autism spectrum disorders. During that period, I learned a lot about myself and it all started to make sense. As the saying goes “the light bulb came on” and I could see clearly what it was I needed to do in order to get my life on track. I applied to graduate school at Marshall University in Huntington, WV. I chose Special Education and Autism so I could help others to understand what it is like to live with autism on a daily basis. I also applied to a program for students with autism spectrum disorders at the Autism Training Center at Marshall University as well. After I was accepted into both programs I was on my way to being independent and having a career. The major support used at the Autism Training Center was a person centered planning tool called PATH (Planning Alternative Tomorrows with Hope). A PATH outlines a person’s dreams and goals, and includes a timeline action plan of what to do in order to make your dream come true. I was able to graduate and enter the workforce in my chosen field.

While I was in school, I was able to live in an apartment by myself with little support. One support I did use was a camera on my computer in order to see my parents and talk to them on a daily basis since I lived more than six hours away from home.

I was able to find employment in Early Intervention/ Early Childhood Special Education. I worked as a service coordinator for an early intervention program called Birth to Three. Then later, I learned how to network and talk to people in the autism field. I was able to apply for a better job at The Arc of the U.S. as Co-Director of Autism Now.

I have used self-advocacy skills by becoming involved in the Autism Society of America and also the Autism Society of America West Virginia chapter where I became a board member. I have spoken numerous times on panels for individuals with ASD. I have given numerous presentations on topics like bullying and transition from one part of life into another part of life (i.e. from graduate school to the work environment). I also took part in a program called Partners in Policy Making presented by the West Virginia Developmental Disabilities Council. It is a yearlong program that teaches one how to be a self-advocate and helps educate them about issues relating to education, disability, and how to write a bill and get it made into law.

Another area in my life that I needed to work on was socialization and having friends in the community. I took a risk and went to a square dance class that was being offered in the community where I live. I had no idea what to expect. I liked the two free lessons so much that I paid to take two classes: Beginning and Advanced Square Dancing. I not only became a part of the square dance club, but was voted treasurer as well. It was one of the best things I have ever done. It was scary but once I walked through that door into the unknown I was able to let myself feel at home and show people what I am capable of doing.

I also met someone my age that I would eventually fall in love with and marry. Not only did I accomplish my goal of socialization but also a goal of finding someone to love who would love me back. I never thought I would ever get married. I was about to give up on that goal, when it was finally revealed to me what my true destiny was meant to be.

Individuals on the spectrum can have a fulfilling life and a career too. We just need the correct amount of supports and the encouragement that we can do it and not let anyone stop us from making our dreams come true. It is the choices that we make that make a difference in our lives. “No” is not an acceptable answer and perseverance will pay off in the long run.

Just keep knocking and the door will be opened to you; all you have to do is to accept that challenge and walk through that door with your head held high. Life is too short so let the light shine through and always have a positive attitude in everything you do because you never know when that once-in-a-lifetime opportunity may come your way.

Who then is the best group to train professionals about autism spectrum disorders? The answer is apparent: individuals on the spectrum can and should be the ones to train professionals because they have lived it, gone through all the trials and tribulations to get where they are today, making their input and experiences invaluable. They are the ones with the knowledge and can tell you like it is. So, utilize their knowledge and learn from the experts!

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