Friday, March 30, 2012

The Mission: 1 in 88 and The Journey of a Lifetime

This is part 3 in the story of how I got to where I am. I think there has never been a more important time for my job as yesterday's report that now 1 in 88 children will be on the spectrum.

After spending 15 months hating myself for this diagnosis of Asperger Syndrome I found the medium of writing. In 2008 my book, Finding Kansas, was self-published and I hoped that someone, anyone, would read my words. One of the things I originally told my dad during an emotional meltdown one time was, "Dad, the only thing I want is the for the world to read my words so maybe, just maybe the world won't hate me as much."

Perhaps saying that the world "hate" me is a bit extreme, but when one feels alone and isn't understood it is easy to feel that way. Thankfully people did read my book and my book found its way to TouchPoint Autism Services. From that I was asked if I would, as a consultant, go through their parent training program. I agreed and my life was changed forever.

First, I learned that I wasn't alone in my battle. Secondly, I learned there was hope. As I said in yesterday's blog I believe the internet page I read in 2003 that read, "people with Asperger Syndrome will never have a job, will never have friends, and will never be happy." However, I saw some of the gains in the children and saw that change is possible and that growth is possible. The self-hatred I felt lifted.

A short time there after Autism Speaks gave me two tickets to go to the Autism Speaks 400 in Dover, Delaware and I went and I must admit I was angry. You see, as I said in the first of these three posts, I wanted to be a race car driver. I came so close to living my dream, closer than most, and yet here I was sitting in the stands watching others live out their dream. Yes, I was angry and about a quarter of the way through the race I clinched my fists in anger. Then a funny thing happened as Jimmie Johnson took the lead and won the race; I asked myself, "Who did Jimmie Johnson help by winning the race?"

The next day I had a meeting at Autism Speaks and the Dr. who wrote an endorsement on my book asked, "Aaron, now that you have a book do you still want to race?" and when she asked that I felt as if I had been reborn. All those nights of self-hatred, all those times I told my dad, "there is no hope" now made sense.

I told here that day, "Yes, I still want to race, but it is a new race now. The race is to spread as much awareness and understanding as possible because there is so much misinformation out there. Surely I am not alone in that pit of despair I was in and those people need to know they aren't alone. On top of that, many doctors and teachers have no idea what autism looks like or what to do about it. This is so wrong because there THERE IS SO MUCH HOPE out there, but only if people are made aware of it!"

A short time after that I became TouchPoint's Community Education Specialist and just recently I became their Autism Ambassador. Also, my self published book got picked up by Perigee Books which is a division of Penguin.

With the release of my book I decided I had to do something BIG. I've been a public speaker now just over two years now and I decided the whole country needs to hear my message. Do I have the magic answer or cure? Certainly not, but what I do, just like I do in my book and blog, is to explain how my mind works and why I do the things I do. Through understanding us on the spectrum there can be hope because the world might just understand that we aren't trying to make you mad, we aren't trying to be obnoxious, we're simply living life and behaving the way our bodies and minds are telling us.

So yes, this Sunday, I will embark on a journey of a lifetime to do what I can during Autism Awareness Month to, well, bring awareness to the forefront. Many cities are lined up on the schedule and I realize this is the biggest thing that I may ever be a part of. And to think, from that person I described in the first segment, and the hopeless shell of a person I described in the second, has come this. For years I said there was no hope. For years I was sure I would just count down the days as I was sure there was no place for me on this Earth. I thought this because no one understood me; my family, doctors, and anyone else never could make sense of me. I was alone, isolated, and unable to tell anyone why I felt the way I did. With that being so I head to New York City this weekend for the launch of my book and the start of my Autism Awareness and Understanding Tour of America because there are those out there like I was. I was there for a long time and I hope I can bring understanding to those on the spectrum and their families and maybe, just maybe others can believe there is hope and not the hopeless line I believed for so long.

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