Wednesday, August 10, 2011

Post 401: The Mission is Clear

I spent yesterday glued to my inbox and glued to TouchPoint's Facebook page anxiously awaiting the next comment on the "Autism Is... Project". With each comment came a sense of awe and a sense of pride. I had spent 399 posts describing my world and my thoughts, but of everything I have done on here nothing has given me more motivation that yesterday.

There was a hint of irony yesterday in that in my afternoon presentation I gave someone asked something along the lines of, "How do you get the courage to leave the house?" Several years ago I didn't. Several years ago I would become so angry with myself in situations that saw me want to say something but I said nothing at all that I would find every excuse not to put myself in any social situations. The way this is achieved was to stay at home.

But where do I get the courage? Even today there are times when I want to talk but am unable. Of everything I endure this is the most annoying and saddening. Contrary to what you might think looking at me from the outside I do want to talk and I do want to be a part of that social world, but sometimes it is just to difficult. That being so I answered the question yesterday by saying, "If I want to continue my mission I must put myself out there. It isn't always easy, but there's a world that needs to be aware and understand autism."

In yesterday's comments I found hope, courage, and motivation. For those that commented I am sure life has its ups and downs, but autism is recognized. Think of those that don't know, or don't understand. If you are new to the spectrum, please read those comments and I hope you can see the hope in those words.

As I said, of everything I have done I think yesterday's post was my most special. When I blog I don't know how many, if any, people will read my words. You all came through with such amazing and profound words. I am going to put the "Autism Is..." entry on the side wall of my blog so it is always easily found so for all time people can add just what they think autism is.

So moving forward my passion towards my mission became ever stronger as think of all those people out there that deal with the spectrum but don't know what it is. Those who commented yesterday understand what it is. As I have said since the near beginning of this blog, "understanding is the foundation for hope." If you expect me to simply break out of my shell and start talking to people I have never met, well, I won't be the chatterbox at the table unless the conversation gets to my area of interest, or as I call it, "Kansas." The mission is clear though, to raise as much understanding as possible. It's not so much to be aware of it, but what is it? What does it feel like? Why do we do the things we do? This is why understanding is truly the foundation for hope and I am thankful that I have a forum and a stage to do that.

Life may not be the easiest for us, but for myself I wouldn't change a thing. Yes, I still get frustrated with myself when I want to talk to a person but walk by without saying a word, but that's me. If I were different then I'd be different and I have grown to like me the way I am. I do always look at ways to improve who I am, but I understand the elements in play in my life. From understanding I have been able to grow. I hope the words I have written before, the ones here now, and the words I have yet to write all help anyone and everyone grasp the spectrum just a little bit more. Yes, the mission is clear and thank you for being along for the journey.


  1. Exactly!
    Today I had training from a jobcoach. She told us we had to show up for every training, unless we had a very good reason. Also, we had to call in absent at least 2 days ahead. And very good reasons aren't just to be tired or something, but big things like running a fever and stuff like that.
    I asked her what about me? Because my Asperger's caused me to become chronicly fatigued. If something happens the night before, or during that night, or something like that, I can suddenly be in a lot of (emotional) stress, which causes me to be tired beyond words. I'm not talking about the tiredness you feel when you just woke up, I'm talking about bonecrushing fatigue.
    So I told her I can't always predict that, but I also can't show up when I feel like that, since I'd risk getting a hyperventilation attack.
    She told me that she felt the only way to get better, was to cross boundries, so I'd just have to show up anyways, even if it meant for me to have a hyperventilation attack.
    I told her in return that with chronic fatigue it's not a matter of condition. Yes, that's important too, but you can't get chronic fatigue away by pushing it. In fact, if you don't just work on it, but push it, it gets worse.
    She told me she didn't know the diagnosis very well, but that I shouldn't let it define me, but just show up anyways.


    People, there is a difference between recognising a diagnosis and letting it define you. If you hear your diagnosis and believe your life is over right then and there and that you'll never progress, then it defines you. But a diagnosis isn't there to just ignore. It IS there and you'll have to work with it. To just say 'well show up anyways' isn't working with it, that's ignoring it.
    I got so frustrated today... Isn't the job of a jobcoach to help you think of ways to work WITH your diagnosis, instead of ignoring it altogether?
    How can I voice this, so she'll understand and not just see a frustrated me, trying to get her way? I'm kind of lost in this problem...

  2. Well, I know there are more people who get chronic fatigued from being on the autism spectrum. So maybe someone, or more people, who reads this blog will encounter someone with chronic fatigue too. Just in case, here's a little chronic fatigue awareness. It's a sad video and I'm not trying to bring people down, but I feel the video explains very well what it's like (maybe I should show this to my jobcoach?).

    Please watch, since explaining the impacts of chronic fatigue is very hard. Me, personally? I find it even harder than explaining my Asperger's Syndrome.

  3. Yes... a lot of people with autism prefer to discuss things that they like.

    That said, say you work in my line of work and you specialize in autism. This is great. However, what if somebody says to you, "Aaron, you are an occupational therapist. Do you do hand therapy, or do know someone who does hand therapy? I had a fall not so long ago and I hurt my wrist." Sure, you can say (and is a perfectly acceptable answer), "I don't do hand therapy. I also don't know anyone who does around here." However, a BETTER answer in this situation is, "I don't do hand therapy. However, I know so-and-so does. Her office is in (insert city here). Maybe you can go see her."

    But where does this "better answer" come from? This comes from talking to people outside your area of comfort. Not that I am trying to beat you in an argument. But, at least occasionally venturing outside your comfort zone does have its benefits. Think of it like a notoriously slow runner stealing an odd base in baseball here and there successfully.

    Since your readers may want a concrete example, I will also give one to you.

    Me: Hey Stacie. It's a nice surprise to see you. How are you today?
    Stacie: I am good. How about you?
    Me: I am fine myself. What session did you go to this morning?
    Stacie: I went to one on army OT. How about you?
    Me: I went to one on adults with autism. How was your session?
    Stacie: (Stacie provides an overview of the presentation she went to and I might comment along the way)
    Stacie: Enough about me. How about your session?
    (I provide an overview of the presentation I went to and Stacie might comment along the way)
    Me: What are you going to next?
    Stacie: I am going to see the posters. How about you?
    Me: Same here. How about let's go together?
    Stacie: Sure.
    (Stacie and I continues to chat until we go on our separate ways eventually)

    I personally don't know the area of army OT too well, to be honest. However, the comments I maybe trying to make or the questions I maybe trying to ask are attempts for me to learn more about her interests... and it maybe the same here with Stacie on autism as well.

    As for the reason why I do this is- I may recall this conversations years later if some colleague I know want to know more about army OT... I can point him/her to the right direction. The colleague will appreciate that most likely... and this will be a win-win in multiple ways.