Tuesday, January 18, 2011

Autism Communities

Lisa Jo Rudy, editor and guide at the About.com autism site (http://autism.about.com/), recently asked readers if they feel part of the "autism community." Unsurprisingly, most answered in the affirmative. Yes, they are part of the community. But, I don't believe I am part of the "autism community" or part of one of the many "autism communities" that self-identify in various ways.

The Autie / Aspie / Aspergian / etc. Communities
I do not consider myself an "aspie" or "aspergian." I don't like the term "autie" and have no desire for any autism-related label. I have tried to read various forums and mailing lists dedicated to autistic members (or members with autism) and end up frustrated with the exchanges after only a few days. I've tried some groups two or three times, but their primary purpose -- discussing autism -- isn't that interesting to me. These are really online support groups. That might be wonderful for some people. It isn't for me.

The idea of a support group, social group, or whatever constituted of people with ASDs has less appeal for me than chocolate covered deep-fried bacon with cheese. I don't like support groups; they depress me. The only groups I have enjoyed were hobby-related. Autism isn't my hobby.

Autism doesn't define me. No one thing does, but autism? Seriously, autism is a really, really minor aspect of my daily life. I don't search out new offenses against me and don't always notice when they are obvious. I don't care to protest against the ignorant organizations and their leaders, and I'm not upset that retailers try to help by donating to Autism Speaks, though I would rather the money went elsewhere.

Part of my reaction to autism-focused groups is because I don't want autism to be the focus of my existence. I don't want employers, readers, friends, or family to think of autism when they think of me. Being active in a group makes that group part of your identity.

Advocacy Communities
I try to answer questions when asked, attend conferences when invited to speak, and stand up for students when they have sought a mentor. Often, the best I can do for a student or adult with autism is guide him or her towards a better advocate than myself. There are some great people out there, and I realize I am not as skilled as the advocacy experts.

I'm not an active member of any advocacy group. I don't protest or write letters to elected officials. I don't sit on any boards, committees, etc. I suppose I might if asked, but I'm not as passionate as the leaders of groups tend to be.

Blogging Community
I am a "blogger" and a magazine columnist, but I do not feel attached to any blogging community. I'm not part of a cliqué, at least not to my knowledge, of technology writers, philosophy historians, or political commentators. I don't correspond with other bloggers, nor do I have thousands of followers. There are blogger conventions. The concept escapes me, but I suppose it's interesting to some people.

There are WordPress, Drupal, and Wikimedia forums, mailing lists, and physical conferences. I'm not interested in those, either. As long as the software works, I'm content. I'm even happier if I can modify the code and templates to my liking. Most of my blogging is for my own use; a blog can store notes and thoughts for access at anytime, from anywhere.

The public blogs were something I had to create for a university course. My wife and I discovered people read them, which was surprising. Do I blog for "my community" of readers? I suppose. I feel some level of obligation to continue writing as long as people seem to want to read what I write. No idea why that is, though.

What Are My Communities?
I know communities, social networks, are important to career development. But, I haven't been active in any professional groups in years, either. I wasn't even part of my academic community, because the attempts to participate in social gatherings or even the rare staff meetings were exhausting.

A community would notice my absence or feel my presence. I'm not sure I belong to any community at the moment, unless you count the readers of my blogs. I suppose I should say hello and thank you, as it were, for being my little community.

Hello, community. Thank you.

6 comments:

  1. It doesn't have to be a big community to be a community. :-) I enjoy reading your posts.

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  2. Thanks for a very interesting perspective on communities. I can relate a little in the sense that being trans is not all of what I am. Nevertheless, I like being a participant in the trans community, among several other communities (mostly online.) Sometimes, to avoid being overwhelmed by things like internal bickering, I have to remind myself that none of these communities, alone or together, define me. I guess I see myself more as a participant in communities than as "belonging" to them - it helps me keep a little degree of distance in terms of identity. Thanks again for your interesting perspective.

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  3. You belong to the blogging community and perhaps that is the worst of all, you ain't no Robinson Crusoe.

    Then again there is the Groucho Marxist community who won't belong to any club that would have them as a member. So there you go.

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  4. I also enjoy reading your posts and pass them on to other men and women who has asperger's themselves. I personally consider you part of the autism community. However, I do understand your position and your feelings.

    You are an excellent communicator for the autism community, even though you don't feel necessarily connected.

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  5. @chrisd - I always feel as if I am expected to be more vocal, idealistic, radical, or something by the self-advocacy community. I'm more comfortable trying to be a calm, quiet voice that happens to know how the institutions function from the inside.

    @The author - Often, my wife and I talk of living out in the country as her family does. It is a goal I have. Nothing like sitting in the middle of 100 acres or so, away from the city, reading books and listening to music. As long as Amazon.com ships books, I'm okay.

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  6. Proposition: the phrase "Autism Community" belongs to the same set as "black white", "hot cold" and "square circle".

    The purported real-world "Autism Community" displays the same kind of nonsensicality.

    ReplyDelete

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