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Friday, April 2, 2010

Autism Awareness Month and How Awareness Became My Passion

April is Autism Awareness Month and the value of awareness can't be stated enough. Last year I had a strange journey to discover that my passion in life is to raise awareness.

Raising awareness wasn't always a priority. In fact, before I was diagnosed in 2003, I had not even really thought of the autism spectrum as anything worth thinking about. Of course all that changed once I was diagnosed.

After the diagnosis I went into a deep depression. My life, as I knew it, seemed to cease. I lost the girlfriend I had at the time and my first passion and dream, driving race cars, was becoming harder to achieve.

A year into this depression a funny thing happened. It was late at night and my depression was at its deepest point., when I sat down and started to write. I wrote about the relationship I lost and broke it down into why my behaviors were the way they were. The next night I wrote on a different relationship that had fallen apart in spectacular fashion.

Night after night I wrote a chapter on different aspects of my life. I had no intention of writing a book, but after about 3 months of writing I started to ponder if it was good enough. My dad had been sending my writings to a lady at Autism Speaks who was reading as I was going along and she had told my dad that my writings were some of the most important, eye opening first hand accounts of Asperger's.

I started writing in 2005 and my book, Finding Kansas, was released in November of 2008. I must admit that when it was released I was only anxious on what the sales meant for me. Just as my life changed when I was diagnosed, my life would take a turn in 2009.

I had my first book signing at a Barnes & Noble here in my hometown of Saint Louis. During the signing there were 2 sets of parents that came up, in tears, saying that their school district and doctor didn't understand autism. This may sound cold of me, but at the time I was simply thinking that these parents were a guaranteed book sale. A classic case of lack of empathy, I know.

In the next three months I had five more signings and at each one the story was told to me about the lack of understanding. One parent was told, "Don't worry about autism. He'll grow out of it by age 16, they ALL do." Still, I was unmoved.

My dad kept the lines of communication open with Autism Speaks and they sent me two tickets to the NASCAR Autism Speaks 400 held in Dover, Delaware. After the race I was going to drive up to New York City and go to Autism Speaks and meet the lady who first said my writings had merit.

During the race I began to truly think about what all those parent had said to me at my book signings. Above the roar of 43, 800hp engines, I began to understand just how wrong, and almost criminal, it is for parents' fears to be cast aside. The quote from that one doctor roared around in my head faster and louder than any of the cars that day.

The following day I drove to New York City to meet with the lady. We talked for a long while and she asked me if I was still passionate about auto racing. I gave a reply that was more important than when I was given the news of my diagnosis when I said, "Yes, I still would like to race, but it is no longer the priority. Yesterday, Jimmie Johnson won the NASCAR race, but how many lives did he change? How many families' lives were improved because of his victory? I had the talent to win, but life has a funny way of working out. I'm in a new race now, a race to raise awareness!"

Since that day in New York I have given radio interviews and have been more vocal on raising awareness. I started a job at Touch Point Autism Services as their Community Education Specialist to specifically raise awareness and promote early diagnosis and early intervention.

With this month as Autism Awareness Month there is no better time to spread the word. No parent should ever be told that autism will simply, "go away". Whereas before my life was about me, whether it was trying to race or trying to sell one book, now it is to try and educate anyone and everyone on what life is like on the spectrum and that there are therapies and interventions that work wonders.

So, this April is my first Autism Awareness Month that I know what my passion truly is. I guess you could say that, for me, the race is on.

8 comments:

  1. If you want to read my aunt's NASCAR experience her blob of the race can be found at http://honeysucklebreeze.blogspot.com/2009/06/me-nascar-sweetheart-nope.html

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  2. Aaron, I am glad you found another Kansas.

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  3. wow this is amazing & so understand where all those parents were coming from ... I live in NSW Australia & yes here to there is no understanding for these fantastic people ... my son is Aspergic & was diagnosed in 2007 at age 8 ...we have a long road ahead but to look through his eyes for just one minute is an eye opener <3 thanks for sharing, i will try & obtain your book in Australia xx God Bless xx

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  4. Thank you for all you do! There is so much that is not understood about Autism. However, with people like yourself, you can help struggling parents with answers to many of their questions. Schools certainly need to be educated so please consider speaking at schools if you get a chance. My daughter was diagnosed at 2 and she is 10. School support has windled down each year and I am very fearful that pretty soon there will be NO support. Keep doing what you are doing. THANK YOU.

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  5. Aaron:
    It is amazing how a diagnosis can help a person make sense of his or herself. I also have Asperger's Syndrome. I was diagnosed as an adult, like you were, about a month after my eldest son was diagnosed with AS. Awareness of Austism Spectrum Disorders is also a great passion of mine. I have not gone as public as you have with raising awareness (being as you wrote a book), but I too will spread the word and attempt in raising understanding to anybody who will listen and wishes to learn. I commend you on your efforts.

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  6. Thank you everyone for posting such positive comments! I started this without knowing what impact, if any, this would have. Your comments fuels my passion even more so and I can't say thank you enough.

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  7. i really amazed about this story, you give me a strong impetus to the work of my awareness in my country egypt......i made a project about autism reason and now i changed my thinking and decided to life on the other side of the wall.
    thank you so much and really wants to contact with you to help me in my project....hope from you to accept my request.
    my e-mail is nourhan_creative@yahoo.com

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  8. Having a message is important and knowing what avenues to send the message is also important. As autism advocates, learning from one another and exchanging pointers are really important. We all have our respective avenues. We all have our own set of knowledge. The thing is, we got to find avenues that our message will be best heard.

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