Things I Know About Autism and Community

During my recent presentation at the 50th International Congress on Medieval Studies (#Kzoo2015), I talked about representations of disability in the history/hagiography of Gregory of Tours.  I noted that the social model of disability can be profitably applied to Gregory of Tours in some ways.  Specifically, I pointed out that while his works note a wide range of physical (and some mental) impairments, they are equally adamant that the only disability is the lack of a family or community support structure.  Put another way, in the Anglo-Saxon society Gregory of Tours chronicles, it doesn’t matter how “crippled” you are; it matters whether there are people around who will help you.

During the Q&A that followed, one commenter asked whether I had done any other work on disability and community support, especially concerning autism and contemporary family or support structures.

I haven’t (yet), but I couldn’t stop thinking about this:

About a week before the Congress, I was having a phone conversation with my mother.  We got on the subject of my upcoming plans, which include attending/presenting at/working three different academic conferences within four weeks (the Medieval Congress, Computers & Writing, and SDS).

For the last two, I have to travel a considerable distance, which of course meant finding lodging.  I mentioned to my mother that in both cases, I’m staying in a room or suite composed entirely of other autistic people.

My mother’s response was sarcastic, flip, and dismissive.  I can’t recall her exact words, but they were akin to “Wow, I can’t imagine what that must look like.”  The “what a lolzy mess a suite full of autistic people must be” message was implied in both the words and in the tone.

I, in a classic combination of half-scholar, half-daughter, jumped immediately to my own defense by citing sources, particularly Jim Sinclair’s piece on autistic community in the DSQ special issue on autism and neurodiversity.  I’m not ashamed of my decision to combat flip ignorance with a homework assignment.  That is, after all, the definition of a “teachable moment.”  I’m angry at the dismissiveness in my (non-autistic) mother’s comment: that autistic community, autistic co-living, can’t possibly be a thing worth having, if indeed it is a “real” thing at all.

Here is what I know about autistic community:

  • Autistic people served as my faculty mentors during the final stages of my MA.
  • Autistic people offered me the position as the managing editor of Neuroqueer.
  • Autistic people keep giving me books.  Good ones.
  • Autistic people made it possible for me to go to C&W.  An autistic colleague suggested setting up the panels we proposed, and several autistic and neurodivergent scholars, including myself, worked together to create and submit the proposal.
  • Autistic people get 100 percent of the credit for my going to SDS.    One hundred percent.  Autistic colleagues encouraged me to go, offered me a ride (even before they knew I could/would help with the driving), and, when I was struggling to fund the trip, graciously offered me the fourth space in their shared hotel room.  At this point, I’d met not a single one of them in person.

These are just the concrete things that have occurred in the past six months, things that are recent, specific, and that I think non-autistic people like my mother would understand.  Here are some other things I know about the autistic community:

  • Autistic people are super fun to talk to about shared media interests (books, films, comics, music etc) because they pay attention.  I’ve never had an “it was really good, I liked it” conversation with an autistic person.  They always, always know what they mean by that.
  • Autistic people don’t care if I’m bloody awkward at conversation starting.  I have Facebook threads going with a half-dozen autistic friends.  Some of them have been going for months.  We just drop in whatever we’re thinking when we think it, and if we’ve gone weeks with saying nothing, so what?
  • Autistic friends are always reachable when I need to bounce ideas off someone, share something silly or awesome, or I need to vent or seek hugs or solidarity.
  • No autistic friend has ever told me that my perceptions are mistaken or my feelings are wrong.
  • Autistic people are hilarious.
  • The autistic people with whom I’m sharing a room at SDS were up-front about their shared-space boundary needs, and never once presumed that if my needs were different it was my job to suck it up and deal.  After a lifetime of being left to deal with my needs all on my own because they were “not our problem,” I can’t explain how profoundly affirming the former approach is.  (The best part: I know now that if I need to defrag, I have a space where I know who is in it and I know they won’t require me to talk.)

Here’s what I know about autistic community: I know these are my people.  I know that after a lifetime of being told I had no people – or worse, that you would be just like everyone else if you would just try harder to be normal – you can have my people when you pry them from my cold dead hands.  Please do not dismiss the only home I’ve ever had, especially after it took me thirty years to find.

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