Saturday, September 24, 2011

A Peek Inside Our Dysfunctional Community: The Thinking Person's Guide to Autism

Apparently being busy with moving, the new job, and severe bronchitis has spared me the annoyance of the ongoing conflicts within the autism "communities." I admit my interactions with some of the people involved in the latest kerfuffles have not been drama-free. I'm not radical enough for some advocates, while some parents have accused me of being too radical. Welcome to the autism community.

However, if you want some insights into the conflicts between adults with ASDs and parent advocates, I suggest you visit The Thinking Person's Guide to Autism. Read the following posts and the comments:

The Thinking Person's Guide to Autism: The Self-Advocate/Parent Dialogues

I concluded some years ago that the autism communities are dysfunctional, but that's not really news to anyone inside the communities. There are "trolls" in all communities, people searching for conflict and people unable to simply ignore comments and posts with which they disagree. We just have some particularly mean trolls — but that's life.

I'm not angry at Autism Speaks, the Autism Society, Generation Rescue, the Autistic Self-Advocacy Network, Aspies for Freedom, or any other group. I'm opposed to some groups, but I don't hate parents or autistics seeking help and support. The only people I am angry with are "doctors" and "experts" shilling snake oil or therapies I consider harmful. Just because I believe some people embrace flawed beliefs (and sometimes junk science), I understand the desire to seek answers.

I wish the parents would listen to the self-advocates. I wish the self-advocates could listen more closely to the parents of the most impaired autistics. I wish parents with ASDs had a greater voice in both communities, to serve as bridges. As an educator with disabilities, I know I wish my colleagues would listen to my first-hand experiences more closely.

I do not have "Autistic Pride" nor do I have any great bitterness about being me. I've written many times that I do not feel "blessed" with my physical disabilities, but I'm not bitter about them, either. Whatever I am today is the result of growing up with my limitations. I feel somewhat sorry for the parents and autistics who have sent me angry emails. They care too much about my opinions and those of other people.

When I wake up, it's usually with a cat or two next to me. That makes most mornings pretty good, even the painful ones. When my wife is with me, life is that much better. If I get a card from my sister or a call from my parents, the day is truly complete. My wife, my family, my pets. Not one of those important aspects of my life depends on my views of autism or disability.

Autism doesn't define me. "Autistic" is merely one small, very small, part of how some people describe me. Sadly, the "trolls" in the community are letting autism define them.

7 comments:

  1. I'd like to know your opinion on my latest post. I need help.
    :-)))

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  2. I hope I never become so jaded not to call a spade a spade. Apathy is truly the enemy of progress.

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  3. The word "autism" is never spoken in our home. Autism may be the reason, but it is never the excuse. I expect both on either end of the spectrum to do their absolute best at all times and both have proven to ruin every stereotype of the diagnosis. That doesn't mean I don't fight for every nickel or every service or every piece of equipment that they can get to help them function in the real world. We simply live with, not for autism.

    You managed to write exactly what I've been thinking lately. Which is why I'm going back to my "corner" since there's no point in pounding against "autism-land" online.

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  4. farmwifetwo:

    Sometimes, the most you can do, physically and emotionally, is deal with the needs of you and your family. I don't think there is anything wrong with using whatever energy you have for your children. It doesn't mean you don't care or aren't improving the world: what you do for your child could improve things for others. We have to "pick our battles" each day.

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  5. I liked this post because it is your opinion and your right to have it. I disagree with others in the community including other parents. But I try to read what everyone is saying and understand them and where they arrived at their opinions. My primary concern is that no one place their child on the spectrum at risk in the name of curing them, and that parents aren't swindled out of money in the name of helping their children. No one on any side of this equation has a right to hate speak at you or anyone else blogging on this subject. Frankly they don't know you, and therefore cannot judge you without having met and spent years in discourse with you.

    ReplyDelete

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