This post originally ran July 26, 2010 and I'm in a place where I need to remember these words. It's so easy to fall into the trap of being defined...
When I first got my diagnosis back in 2003 I don't think many people understood what Asperger Syndrome was. Outside of the elite professionals in the field I feel like it was misunderstood, if understood at all. "So is it or isn't it autism?" was a question I had to answer all the time. It was frustrating to the extreme because, at the time, I didn't fully know what it meant.
Shortly after my diagnosis I looked on the internet to try and better understand this foreign sounding syndrome I had. What I found was not helpful at all because this website said that, in very concrete language, "People with Asperger Syndrome will never have a job, will never have friends, and will never be happy."
There were no words like "may" or "could" in the website I read. This was the first reading I did on the subject and I instantly began living life in a proverbial vacuum. Nothing mattered because I believed the words on that website. Up until that point I had lived my life just fine, but after the diagnosis and that website the name Asperger began to define me.
During the next 15 months I pushed everyone and everything as far out of my life as I could. Why would I want to form a relationship or friendship when it will just be destroyed because that website, in bold words like "never" said I can't?
The depression was immense and it started to consume me. I believed those words to a fault and eventually a fuse blew in my brain because I started to write about my experiences. Over the next year and a half I wrote my book, "Finding Kansas" by accident because I was writing for the sake of writing.
Something changed while I was writing as a thought entered my mind. This thought has bounced around in my mind for years now, but was realized yesterday and this is why I am writing this today.
There is nothing worse than when one lets something define them. I let Asperger Syndrome define my life. I accepted failure before I attempted something because of it. This isn't to say I can conquer everything about the syndrome, but I feel as if I lost my identity when it defined me.
What did I realize yesterday? I realized that, in a way, I am now defining Asperger Syndrome. In a way, with my concepts I have set forth here on my blog and in my books, I am, but that's not what I am really getting at. What I mean by that "I am defining it" means that I am not going to let words on a website dictate who I am. The world as a whole wants all conditions to fit into a nice and tidy box, but the autism spectrum is so vast and complex that no two people will be the same. This means that each person on the spectrum will help define the spectrum.
Be it people on the spectrum, or family members, we all will help define the autism spectrum. If you have a son or daughter on the spectrum and you fall into the trap I did and let the words I read on that website define the person they may become that person. Don't let this happen! Each person is different, there is hope, and third party words should never define a person. This is why I write, to give you an unique "behind the scenes" look as to how the mind on the spectrum may work. I won't kid myself and say that all people think like me, but with each comment on here that relates to me, or each e-mail of thanks I receive, I reflect back to when it defined me and I smile at how naive I was.
The autism spectrum, in society, is represented by a puzzle piece. I don't know if anyone has looked at it like the way I'm about to say, but this is great because a puzzle piece isn't defined by the puzzle, it defines the puzzle with many more pieces. That's what each person can do. We all have different stories, and through these stories we can get the world to not just know about us, but to understand us! So please, don't be defined by it if you have it or are a family member of a person who does, but rather help define it so the world outside the spectrum can understand.