Share it

Monday, July 26, 2010

Defining It

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 Syndrom 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.

30 comments:

  1. Amazing thank you

    ReplyDelete
  2. I was diagnosed with Asperger's Syndrome as a kid; I'm 31 now; and it has dictated my life. My relationships with Women are almost exclusively platonic and I am prone to forgetting basic words or facts I normally rhyme off.

    I have had to struggle all of my life to achieve anything. My father was killed in the Northern Ireland 'Troubles' in 1989 then my Mother developed Parkinson's Disease at 2003. I am looking after my Grandmother; Paternal; and younger Brother; who was only 6 Months old when Dad was killed; ever since.

    Another thing I struggled with was driving. I didn't pass the Driving Test until I was 28. Until then I thought I'd never get it.

    Also I struggled with my Weight. Two Years ago I was 25 Stone (350 Pounds), now I'm down to 18 Stone 13 Pounds (265 Pounds). Support Groups are a more effective way of losing weight than Diet and Calories Clubs.

    I hope to hear more from you soon; I seen this blog advertised on Facebook.


    Regards,



    Desmond.

    ReplyDelete
  3. I think it's wonderful what you do.
    I have asperger too...
    I really appreciate your blog
    greets Kim (from belgium)

    ReplyDelete
  4. I'm sixteen, and I've had to deal with Asperger's my entire life. I know that some people said on comments to your other posts that it develops slowly, or that it's not as big of a deal as you make it out to be, but I disagree with them. People do say that it defines us, that we are all the same. I'm the type of person able to adapt to stuff, though, too. I've been trying to raise the awareness of it, also, but people do ask me if it's the same thing as autism. I had to struggle for most of my few years, and still am, but when people find out I have it, they go "Really?" because I've learned to handle it, for the most part. I can help with any kids that need the help with dealing with it, too, so I can be asked questions, since I am still a kid and will still think in a similar way. And I completely agree, it is one big puzzle.
    forestdrgn@gmail.com

    ReplyDelete
  5. Aaron, do you go back and read what you've written on your blog? When you've had an insight such as today's do you follow through on those thoughts to see if they lead to other insights? Or do you at least keep notes on this particular insight to remember the importance?

    ReplyDelete
  6. Deanna, I don't actually remember most of the stuff I write. Perhaps this is why I am able to write because I write from the subconscious. Today's article was written without thought. The only thing I think on is the title for each entry. I have been this way since I first sat down to write on that 1st night I started to write back in 2005.

    The odd thing about me though is that I have not read my book, or any of my writings at all. When I have tried to read it's like the words aren't my own and then it rekindles feelings I have already worked through.

    I do remember the concepts though and I am confident my unconscious thoughts remember everything because concepts are usually spawned off of other concepts.

    ReplyDelete
  7. Thank you Aaron. My nephew was diagnosed with Asperger's Syndrome and I am always seeking a way to help and understand him. Your words were encouraging. My nephew suffers from depression which scares me something awful......he's only 10 years old. At times he opens up to me, but when it becomes to deep for him to share he shuts down and does not want to talk anymore. This makes me feel useless. I love him so and I want to help him, your blog has given me an idea. Instead of talking maybe he would rather put it in writing.....I will get him a journal, and hope this will help him to express himself, if not to me maybe it will become therapeutic in some way for him.

    ReplyDelete
  8. I got tears in my eyes when I read your part about not letting something define you. I am so glad that you know this. We can all exceed other's expectations. Expectations don't matter. What is matters. My son has autism and I usually say he is someone "with autism." He is not the autism but it is something he needs to deal with on a daily basis. We all do. Thank you for writing. You are wonderful in my opinion.

    ReplyDelete
  9. Hi Aaron. Our smart, funny and bright ten year old was diagnosed at 3.5 but he doesn't know about his diagnosis. His psychiatrist would like to tell him, with us present, and I'm very worried that our sweet, sensitive boy will take it very hard and become even more depressed (he's already on meds). He's very hard on himself, can you suggest a way to make him not feel badly about being an Aspie? Thanks very much.

    ReplyDelete
  10. Amazing! My daughter was diagnosed with autism at 2 1/2, she is 8 now and never fails to amaze me. She doesn't even think of herself as any different than anybody else. Watching day by day is truly amazing. Exhausting some days but still amazing. It's always wonderful to hear from people much older than her that speak out about their experiences because all I know is the now and she is only 8. You are completely right though, never let words define you. Every one is different and every one has their own story, that's why I love the puzzle piece as well. I even had a bracelet made with the puzzle colors and wear it often. I am my daughters biggest advocate and I plan on doing my best for the rest of our lives. :-)

    I have a blog I do just for her if you would like to check it out.
    www.lovelyautism.blogspot.com

    ReplyDelete
  11. Anonymous said...
    Can you suggest a way to make him not feel badly about being an Aspie? Thanks very much.

    That is a tricky slope because it, in my opinion, depends on the person. The thing is though that the label, or diagnosis, doesn't change the person whatsoever. As years go on it may become easier, also the ability to understand it for the person increases. I have on my blog in the archive, somewhere, an entry on "Life After Diagnosis" and perhaps that may help. Again, I know I haven't given a clear cut answer, but each person is so unique that there won't be one catch all answer.

    ReplyDelete
  12. Thanks Aaron! I agree with you 100%! My son is 10 now and I'm always making sure that he understands that there are no lmits to what he is capable of doing. The sky is the limit.

    ReplyDelete
  13. Aaron I am far more impress of what you said in this article. I am so proud to hear you change your life around and not listen to what the world have to say about Asperger's. We are all in the world for a good change. No matter how or who we are. We need to prove to people that just because someone has autism or Asperger's or any other syndromes they are not all the same. We need to try to break that chain or similarity and try to help make everyone with a certain syndrome overcome there disadvantages that people always state that they have. I feel that family members or care providers need to try to make people change and overcome the disadvantages. Autistics like repetative actions but why not try to break that repetative ways, try, to do something different.

    I have been a care provider for Autistics for about 10 yrs off & on. For example: The girl I work with now is 19yrs old and she never lends out her movies. Never! According to her mom. It took me 20 minutes to let her understand that I will return the movie in the same condition she is lending it to me and that it will be a day & a half that I will have it and that she has so many other movies that she will not see this one today or tomorrow or the day I will return it. WHich she knew she wasn't going to watch. By repeating it over and over to her I eventually convinced her and made her understand. Never the less she ended up lending it to me without a scene being made. Her mom was so surprise. I had a joy in my heart because I made her do something that she will never do. Usually people don't try to make changes because they do not want for a drama scene to occur but it's all about communication and trying to talk to people in ways that they can understand.

    Aaron I may of gone off your topic but I am proud of you and keep up improving. May God bless you.

    ReplyDelete
  14. I have a son and we have until today no right diagnosis about him. After Logoped, psychologist, defectologe, we went to center for autism, there he has done a test. But we haven't get the right answer, yet. They told us, to be happy, that he function and can speak, but this is not a help for me.
    In school, he can't have good results, even I learn with him hard.
    We live in Serbia. My son is other like other children in his age (13). And I have problem, to know really, what is happen with him, therefore. The IQ test was 80% verbal and 122% visional. But this IQ means to me nothing!

    ReplyDelete
  15. I applaud you and the way you think. I hope people that read this will look at Asperger and Austism with new light and hope. I have an 11 year old that has Asperger and it is amazing the narrow mindedness of others. I look forward to reading about your journey as I look forward to my daughter's.

    ReplyDelete
  16. My oldest son is 6 yrs old and is diagnosed PDD-NOS with Asperger's traits. I do a lot of research on autism and it's still always refreshing to hear words from an adult anywhere on the spectrum. I found your blog via Autism Speaks (on Facebook). Thank you so much for taking the time to record your thoughts, idea, and opinions (even if they seem foreign to you later, like you described). It sure helps us parents out there seeking guidance.

    ReplyDelete
  17. My son was just diagnosed. He is doing so well, but the diagnosis is helpful for us so we have direction when he struggles. Thank you for your thoughts.

    ReplyDelete
  18. Thank you for sharing. You have reminded me to not let Autism define my 5year old son. He is nothing short of amazing!!!

    ReplyDelete
  19. Aaron, you have stated a great insight that EVERYONE needs to hear, not just people with autism. I am not defined by my disability, or my inability, but by my ability and my potential. I have been reading your book, and have found a similar trait there: the traits you have revealed in yourself apply to all of us in one way or another. Thank you for sharing your introspection!

    ReplyDelete
  20. You have great courage to overcome the challenges of autism-Aspergers. I believe that everything they say about autism spectrum are challenges that can be overcome. Nothing is absolute in this world and all the words about autism spectrum are not what define my 8 year old who is challenged by autism, it is everything he does to overcome those challenges that define him. I work diligently with his school, teachers and principals to advocate for the best guidance we can give him to help him overcome the challenges, and to help everyone in his school understand how we all are different, we all have challenges, and we all can help each other overcome those challenges.

    Your work to define yourself out of the autism box helps us all define ourselves outside of the boxes society gives us. Thanks! :)

    ReplyDelete
  21. You have great courage to overcome the challenges of autism-Aspergers. I believe that everything they say about autism spectrum are challenges that can be overcome. Nothing is absolute in this world and all the words about autism spectrum are not what define my 8 year old who is challenged by autism, it is everything he does to overcome those challenges that define him. I work diligently with his school, teachers and principals to advocate for the best guidance we can give him to help him overcome the challenges, and to help everyone in his school understand how we all are different, we all have challenges, and we all can help each other overcome those challenges.

    Your work to define yourself out of the autism box helps us all define ourselves outside of the boxes society gives us. Thanks! :)

    ReplyDelete
  22. My daughter was diagnosed with autism in March at 2 years old. Of course I read everything on the computer telling me she would never go to college or live on her own and was very upset. I have learned so much over the last 5 months about how wrong all that can be. I have seen so many sucess stories and watched my baby girl make the most amazing progress. I just recently realized what you said that she will determine what she does with her life and how far she goes and having this diagnosis doesn't define her future. I am thankful that you made this post because it helps me feel even stronger that having this diagnosis doesn't mean she will never live a normal adult life.

    ReplyDelete
  23. Aaron, I'm 47 and was diagnosed with "mixed dominance". That term doesn't exist. Autism and Asperbergs weren't recognized until roughly 20 years after it was recognized I had something going on.

    You are so right in that it can define you. I've struggled with that for years. What is more frustrating is that more people than not told me I was using it as an excuse. It was demeaning and today I beg to differ.

    A few months ago I started reading up on it and following blogs and such. I was looking for a magic bullet that would give me "life's navigational rules". After a week I realized that wasn't going to happen. But something even better did come out of it. I redefined my philosophy on life. Like you I came to the conclusion that it doesn't have to define me. But in a way it is the navigational system I need.

    While autism and asperbergs have made me feel rudderless, I definitely have learned over the years what are the problem waters. Understanding I have asperbergs further helped me understand what triggers issues. Knowing what are issues and being able to identify them helps me help myself.

    If I'm going to have to deal with a new group of people, a crowded room, a loud situation, I can coach myself before hand on goals what to watch out for in my behavior, what to say and do with people etc. so that I can come out of the situation not feeling defeated but successful.

    So as my family says it is not all about me, me, me, me :) Humor always helps. Thank you for your blog. Thank you for sharing your experiences. Your post was a great help in starting my day.

    ReplyDelete
  24. Aaron, you have a truly beautiful soul, and I love seeing it shine through in your blog.

    Thanks to you, my puzzle pieces tattoo means more now than it ever did. :)

    ReplyDelete
  25. Thank you Arron for giving my some insight and understanding for my son. He was diagnosed at 4 and is now 11, and we have worked long and hard to support him to be the best "him" that he can be. I love how you have put so many things into perspective for me as a mother, but mostly the inspiration to encourage my son to be able to define autism, and not let it delfine him. So far he has defied educators and Psychiatrists alike by successfully attending public school and learning 2 languages simultaniously (French and English). Although he struggles with the social world, and some of his perceptions, he continues to define autism for himself.

    I often tell people who might not know about autism, that it looks different for each person who is diagnosed with it. Autism is as individual as the person.

    Anyhow... thank you for creating a forum of enlightenment and support. I read your blog every day, and encourage EVERYONE I know, especially those who know my son, to read it also. Thank you for being the best YOU!

    Regards
    Victoria

    ReplyDelete
  26. Hi Aaron!!

    Well im 28 and i was diagnose in Feb 2010 after that i readed a lot of books about aspies and today i found your blog via facebook and let me tell you thank you i understand a lot of things now, but i still hate the meltdowns.

    ReplyDelete
  27. Dear Aaron, I saw your post on FB. My son and a niece both have Asperger's. My son is 10 and we have told him about the diagnosis, but otherwise, to us he's as normal as any other person we know. No human being is alike, maybe some are just more amazing than others. The kids I know with Aspergers are simply amazing. They do things their own way, and hey, so what if they don't look you in the eye - there are so many other incredible things they excel in, and do sooo much better than anyone else. I love my son and my niece, and I've noticed that as long as we let them just be themselves, all is well, and they are accepted by others -especially kids their own age- fine. Thanks for sharing with us, it's always wonderful to get another glimpse of the other side of the wall. :)

    ReplyDelete
  28. I don't have either Asperger's or Autism, but I know several people who do. I enjoy their company because they challenge the way that I view life, they make me think differently. Good on you for writing this blog, Aaron!

    A couple of links you might find interesting to look at -
    http://www.autismfile.com/ - Polly Tommey runs a very popular, if sometimes controversial, magazine about Autism

    http://martynsibley.com/ - Martyn is a friend of mine who is quite seriously physically disabled, but you forget about that within the first few minutes of meeting him, he is an astonishing young man who is challenging perceptions of disability.

    All the best, Aaron. Keep writing! (By the way, I found you through your ad on Facebook).

    Emma - from England

    ReplyDelete
  29. I think your message is right on from the perspective of someone with autism spectrum disorder (under the new DSM). However, helping professionals ARE trained to look beyond the "neat and tidy box" because the objective is to get people with autism to achieve as many things that are meaningful to them as they potentially can.

    However, as a researcher, I have to pack the things that are said into the fewest number of "boxes" as I possibly can. Since I am doing content analysis, that means I have to use the fewest number of codes (or "boxes") I possibly can while capturing as much information that answers my research questions I possibly can. The reason I am doing this is that I can generate a concise conclusion so that I can provide some suggestions to helping professionals.

    ReplyDelete