3:40am August 26, 2013

There is not one autistic community.

I’m just talking about the English speaking world here. Outside it there is even more variety.

Online alone, there are tons of different mailing lists, web forums, blogging circles, and social networking groups by and for autistic people. Some of these communities have a lot of overlap with each other. Some of them have virtually none.

Offline, there are many different communities of autistic people.

There are support groups that meet regularly.

There are gatherings that happen yearly or more often.

There are small groups of autistic people who happen to know each other and spend time together.

There are autistic people forced together by circumstance (special ed, institutions, etc.) who form relationships with each other.

There are people who meet because we get services through the same agencies.

There are people who meet because they go to the same college or work at the same job.

There are autistic people who meet because they are involved in the same parent-dominated autism groups as each other.

There are social, recreational, political, educational, and self-advocacy groups.

There are autistic people whose families have large numbers of autistic people.

All of these things can be autistic communities.

There is no THE autistic community.

Each of these communities has different norms, customs, and values. Each of these communities attracts different kinds of people. Many communities attract more of one kind of autistic people than another, or attract autistic people with specific life experiences and drive away people with other life experiences.

What most people think of as “the autistic community” is a narrow and often self-selected segment of the autistic communities that exist as a whole. I realized this the moment people in ANI kept trying to tell me I had never been around autistic people before.

I had grown up with a lot of (mostly undiagnosed) autistic people in my family, gone to both public and private schools with (mostly undiagnosed) autistic people, been in mental institutions with (diagnosed and undiagnosed) autistic people, gone to special ed with (mostly diagnosed) autistic people… But everyone was trying to explain to me that the experience of being around autistic people was new to me. And every time I tried to explain that it wasn’t, I would be told “that’s different”.

So the autistic boy who tried to hide in my room (and always my room, running to me in particular) when staff wanted to tie him down to stop him rocking. Didn’t count. My autistic friend in special ed who was the first person I ever met who shared a lot of my sensory interests and subtle body language stuff, and we bonded over that. Didn’t count. My own family. Didn’t count. Only “THE autistic community” counted.

What most people call the autistic community today has a particular history. Starting in the ASA, MAAP, the Saint John’s autism listserv (all parent dominated), then ANI and InLv, later joined by autistics.org, AutAdvo, lots of Yahoo lists, then later the web forums and blogs, then ASAN, then later the social networking, etc. With each step branching out into more and more subgroups but sharing a common history. Even if it’s a history most people who enter it now are unaware of.

(I didn’t mention AutCom because while there’s plenty of overlap now, there was a time when there was virtually no overlap whatsoever. And the autistic people who used to be involved in it had virtually no overlap with the people in the main autistic community, and it tended to attract a lot more people who couldn’t speak.Still does.)

And even within that community there are large subgroups who are totally unaware of other large subgroups.

And that community itself is only one large group that’s itself unaware of other large groups that are totally unaware of it.

This autistic community, at this point in time, self selects for autistic people with certain traits. Not everyone in this autistic community has those traits, but more so than in some other autistic communities, and sometimes it’s a vast majority.

* Able to use words

* Able to, at this point in their lives, speak, much of the time

* Well educated

* White

* Does not want a cure

* Prefers autistic person over person with autism

* Normal to high IQ

* (often) good with abstract intellectual stuff

* what Donna Williams would call more “interpretive” than “sensing”, and if not, at least able to shift into interpretive mode to interact

* Better at words (text at least) than body language

* Better at reading and writing then understanding speech and speaking

* Lots more stuff, including both specific autistic traits, specific life experiences, and specific beliefs about the world.

These are not the norms everywhere. There are lots and lots and lots of autistic people, including autistic self-advocates, who do not share these traits.

I have been in autism groups where nearly everyone is highly sensing and those of us who could shift into interpretive thought found it painful to do so for too long.

I have been in autism groups where nobody could use speech for communication purposes and many people could not use words at all.

I have been in autism groups that were very racially diverse.

I have been in autism groups where nobody had a college degree let alone the grad degrees that people seem to have tons of around here. I have been in autism groups where I was the only one to have even made it to college.

I have been in autism groups where I was the only one who could stand to be called an autistic person rather than person with autism.

I have been in autism groups where I was the only one who did not want to be cured.

I have been in autism groups where intellectual stuff was a serious struggle for nearly everyone.

I have been in autism groups where most people could not read or write.

I have been in autism groups where most people found nonverbal communication easier than verbal.

I have known lots of autistic people who were not part of autism groups and therefore their views were unaffected by the community norms of people within them.

I get so very uncomfortable when people make generalizations about what autistic people experience or believe, based on a small number of segments of this autistic community.

When people say that NO (or virtually no) autistic people believe this, want that…

…I hear that their experience of autistic people is limited. Not always limited to one specific community, but often so, or limited to places where they’re more likely to find autistic people with a particular set of experiences and beliefs.

And yes there are plenty of exceptions to all of these things in this autistic community. I am an exception to many.

But these are still norms here. And I worry when people don’t realize these are community norms, and not automatic beliefs and experiences that all autistic people have.

(Or the assumption that all autistic people would think this way if exposed to the ideas. Or that autistic people believing otherwise are all brainwashed. Or etc.)

I am glad this autistic community exists. But I am also glad that others exist. And I wish more people in this community were more aware of the vast diversity of autistic people:

Diversity in the ways we experience autism.

Diversity in the ways we think about autism.

Diversity in life experiences, both related and unrelated to autism.

Autistic people who are different from community norms, and/or who have experienced other communities, have been saying this for ages. But people forget fast.

Also people are often afraid to acknowledge this because nonautistic people often say things like “you people aren’t representative so you shouldn’t have any say in autism policy”. Which is bullshit, no political group is perfectly representative and nonautistic people sure as hell aren’t representative. That is not what I’m saying.

But I do think people should be more aware of what goes on outside this one community. (Or even outside the segments of this community they’re most comfortable with.)
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Notes: