Tuesday, November 2, 2010

My 200th Post: Continuing to Define It

I intentionally left out my "Defining It" post from yesterday's look back on my blog because over the weekend I came to the conclusion that the only way to celebrate my 200th post was to rerun it seeing how it has been my most viewed, most commented, and most shared post.

As I rerun it though I want to you think about it and, if you would, share with me what you would want the world to know about the autism spectrum, or how you would like to see the views on autism change. I have shared my experiences over the past eight months and now it is your turn. It is only through our voices, be it spoken or typed, that the world will begin to understand us!

So now here is my post from July 26th:

Every so often on my blog I restate what keeps me going and my motivation behind this blog and my presentations. I often get asked "why do you do what you do?" and this concept is the ultimate answer.

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 don't form relationships, don't have friends and are depressed."

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 "don't" 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.

Now it is your turn.


  1. As Mom of an 8 yr old Autisic son, I'd love to see more positivity surrounding all spectrums of ASD.

  2. I have just inherited a 26 year old man with Asperger's. I've never been around it before and it is very hard to understand. michael talks to himself in diffeent voices every second that he is awake. I have Generalized Anxiety Disorder myself, a fairly severe case of it and though I am getting better with Michael, I don't know that I will ever be completely calm around him. It's a very hard mix of disorders! Sometimes I have to drop everything and run to my room because the constant talking won't allow me to settle down.

    I love Michael and he loves me. He does a lot to help me around the house. I'm truly trying my best to make this work. I wish more was written about GAD and how it feels, what it does, but I do appreciate things like your blog helping have more insight into my step-son.

  3. This is truly amazing. The world must read and learn if it will ever know who we truly are! I hate when I hear that, "people on the spectrum don't care". WE DO!

  4. Aaron, I saw you present at the MNEA Fall Conference last year and you have come a long way. Thanks for giving us such an insight into ASD.

  5. I followed the link on facebook to get to your blog, and I am glad I did. It really moved me reading this post, and I will read your others when I have more time. My 12 year old daughter got diagnosed with Asbergers 3 years ago, and reading about it on the internet I got really worried about my daughters future, especially when I no longer am around. (Single mum, with no close blood family nearby.) I too read that people with Asbergers would not form close relationships etc, and I got scared by reading it, and forgot to look at my daughter and see that she already had formed friendships and close relationships. I just need to remember that it more often than not need to be on her terms, as for example she is not as keen on the cuddles as I am. :-)
    Since her diagnoses she has formed more close relationships. She gets on great with my boyfriend and his children, as one of his children has got ADHD and traits of Asbergers, so she is being understood, something which is a relief. She is also attending youth club with children in the same circumstances and she is forming friendships there too and learning to communicate and simply be around other people. So with this in mind I worry less about her future and expect that she will with getting older will learn more social skills and manage to live well with having Asbergers.

    Thank you for writing this blog. :-)

    Best wishes,

  6. my diagnosys of asperer was when i was 25 (i am 42 now). I remember it vividly : went for a checkup with a doctor for my heart and he said mam you should talk to my wife i believe your son got autism. It is only a few months later that a 'shrink' gave me the diagnosys : asperger. i finally found what was wrong with me.On school thet singled me out. My favorite classteacher told me computers were the best thing to learn for me.she was right. She could know because : guess what her son has autism as wel ...

    thanks for your blog

  7. I'm new to this site and to your blog, but I want to tell you how much I appreciate what you are doing! My ten year old son was diagnosed with Autism a year ago. He is constantly being "defined" by the doctors and the diagnosis. I love what you said about the puzzle piece and many others defining the puzzle. With your help, I can guide my son through the world and help him to deal with how he sees things. Thank you!

  8. Congrats on hitting 200 blog posts!

  9. A thing I want the world to know about the autism spectrum? Well Aaron, you covered most of it! But if there's one more thing I want to add, I'd just want to get a myth out of the world.
    Somehow some people misunderstood a test. Some people were actually suprised I even COULD be on the spectrum. They thought only men could be! This is because a test one time said >MOST< people on the autism spectrum are men.
    So I want people to realise women can be on the spectrum too. The test only said MOST men, not ONLY men. Also, the thing that gets you on the autism spectrum isn't on the Y-chromosome. It's something in the brain (for more details, look it up, there's plenty of information on the internet on this).
    Seriously, I don't know where this myth of it being in the Y-chromosome came from. It really suprised me! But it's not true! It's not in the Y-chromosome!

  10. After I printed out a girl-specific page of asperger signs and showed it to my daughter's counsellor, she was like, "Ohhh...see I can pick it in boys a mile away." Meanwhile....no diagnosis coming any time soon..