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Monday, July 9, 2012

The Ongoing Quest: The Battle Against The Denial of Hope

I'll admit that I might just live in a bubble of sorts. What I mean by that is that since I do believe there is always hope, and that every presentation I give I say it, I may just be oblivious to what other information may be out there. I mean, I thought we have moved on from the day when I got diagnosed with Asperger Syndrome in 2003 when I did a search on the internet that day and found a website that stated, "People with Asperger Syndrome will never have a job, never have friends, and will never be happy." That's what I read back then so surely we have moved on, right? Surely the information is better, right? Surely this information isn't still out there because those words and those words alone are about the biggest hope killer possible so surely we've moved on, right? I thought so; I really did. It's odd in a way that in one week I would hear so many stories proving my belief wrong.

I believe, without a doubt, that starting off with the right information after the diagnosis and confidence are two of the most important things for a person with Asperger Syndrome. The two sort of go hand-in-hand because if a person gets the wrong information, say, a prognosis with about as much positivity as learning that no matter how hard you try, no matter how hard you fight, no matter how much you want it all efforts will be futile. If a person were to learn that starting off why would one even want to try?

This is the battle. This is why the need is ever ongoing to raise the awareness and understanding. If you've read my blog a long time I'm sure I write a post like this at least once a month, but I know all too well what starting off with the wrong information is like. The internet is a great thing, but for every site like mine there is another out there lurking with words that deny hope; words that will paint a box that a person may believe and because of that they may never be able to get out of.

Okay, three paragraphs into this post and I'm shaking my head as to why this is still a problem. As I said, confidence is very important and if a person believes that it is hopeless and all efforts will be futile then why would that person have any confidence at all? I know that thought process as I lived with it for years. Back then I would have given anything to be anyone, anywhere else. I would say I let my diagnosis define me but that isn't 100% accurate; I let the website that painted that grave world of hopelessness define me.

I'm not going to deny that Asperger Syndrome is a challenge. At the same time it is a disservice for those just learning about it to read those words that deny hope. So, with that being so, this is the battle. We still have a long way to go to raise the level of understanding and awareness to a point that this battle is won.

This isn't something, at least for me, to take lightly. There is no reason, none whatsoever, that a person should read or be told that all is lost. With every story I hear, and I heard way too many last week, of a person hearing hopeless information and the bottomless depression that follows I must say I get angry. I was there once and know the story all too well. So, when I hear a story like that, I wish my voice was louder. I wish I could just shout to the world and all would listen. I wish all parents could hear me so that they know the potential pitfalls of misinformation. I wish all teachers could hear me so that they would know that there is hope and that, perhaps, the information that they have read about hopelessness is false and above all else I wish every doctor could hear me so that they know that they have so much power after diagnosis. I was essentially told, "good luck" by my doctor with no other information so of course I was going to look it up by myself. So yes, I wish doctors would hear me so that they could understand the impact of the misinformation.  There are so many fronts to this battle, but to end this post all I can say is, quite simply, we can't afford to lose this battle.

2 comments:

  1. Exactly Aaron! These websites are set up to try and help, but because of the misinformation that's on there, it's actually quite harmful. There's still a lot of awareness and information to be spread. Keep up the good job! :)

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  2. I'm currently in the middle (figuratively speaking ofc ;) ) of getting a diagnosis, and reading these posts makes me pretty happy that I have a good friend who has already gone through all of this. This probably saves me from all the trouble you describe here, because I wouldn't know how I would react in that case...

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