“Autism” a kick in the stomach?


Someone just linked to first person singular piece, which seems like an appropriate title for it given that it seems to be one of those “emotionally honest” accounts that doesn’t examine where the emotions come from and whether they’re appropriate and so forth. This is how she describes finding out about autism:

Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup, it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong.

The first autistic people I knew, where the word “autism” was said about them (plenty of my family was autistic without using the word) were in nasty, horrible places with me. But they were not nasty, horrible people, and I never thought they should be some other kind of person. Many of us made friends and communicated with each other while staff were oblivious and considering some or all of us non-communicative and/or incapable of true friendship.

Maybe what I’m writing now mirrors something I wrote a long time ago, but that got lost when my blog crashed: “Lessons on inclusion from a segregated school” was the title.

Where I learned to appreciate neurodiversity was not in the abstraction of an Internet forum but in the undeniable concreteness of institutions for people society wanted to throw away. “Autism” was a word describing the people I found it easiest to communicate with for the most part. But in all of the forms of segregation that I experienced, there was a wide variety of people, and we were forced to deal with each other. And we did deal with each other, in good ways or bad ways, but there was no way for us to control who was there and who wasn’t. So we learned in one way or another to live with everybody.

Everybody meant people with diagnoses that most people are terrified of, as well as ones that are more socially acceptable. There were people with diagnoses of autism, mental retardation, schizophrenia, cerebral palsy, bipolar, depression, dissociation, conduct disorder, personality disorders, low functioning this, high functioning that, and probably anything else that could be thought of. Sometimes we drew lines, and sometimes we didn’t. Sometimes the lines were drawn for us, and we were warned in various ways not to cross.

I learned, though, to appreciate the variedness of people, rather than to regard it as a tragedy. And believe me, we were mostly the sort of people who are regarded as tragic. It’s not ignorance of the full extent of human difference, or what happens to the too-different-for-society’s-comfort, that makes me celebrate its existence. Some people write that it is, that people like me just haven’t seen or experienced these awful things, but the reality is that many of us have, we just differ on our opinions about it.

As a friend, Vanesa, told me — while bouncing off the walls quite literally, while about to spend the bulk of the next few months tied down in a room next to the one I was tied down in, while talking a mile a minute about several topics at once — “The reason we’re here is because we’re not cookie-cutter people. They don’t want us out there.” She later screamed about cookie-cutters in front of staff, who merely regarded it as disorganized manic speech. Words from a private conversation became our code words which became to the staff disorganized speech or echolalia. This is how you communicate around people who simultaneously don’t want you communicating and don’t believe you can communicate or have anything meaningful to communicate. And this — what she said — is also a perfect summary of neurodiversity.

Connection of this kind was frowned upon, was not the norm, but it was there. And it was there most often, for me, around other autistic people.

A purely personal sense of the word autism? I didn’t know what it meant, even when I was diagnosed with it. But it didn’t mean horror, when it did begin to have meaning. It meant people who as often as not inexplicably spoke my language. It meant the first people I felt like I could have two-way communication with on many levels. All of this occurring, oddly enough, inside the nightmare scenario of most parents: the institutions and special schools that really were horrible but that most mistakenly blamed the state of our bodies and minds for our presence in. People blame autism for those places but the existence of autistic people never created those places.

So when I hear the word autism, there are no kicks to my stomach. When I meet autistic people, I have no desire to turn them into non-autistic people. I know the worst things that can be done to us and I know that our being autistic doesn’t cause them. The idea that someone’s version of “emotional honesty” (because it seems to be that pattern, again) means saying how horrible it is that we’ll always be autistic… it’s not good at all.

Tags: autism neurodiversity beauty disability institutions emotion


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

2 responses »

  1. I’m keen to read Lessons in Inclusion.

    Your piece about how you yourself learnt about autism kicked me in the guts. It was good to know that you learnt to deal with a wide variety of people, including people we never expect to know (I mean, people who we don’t meet outside of state institutions).

    LOVED the way the staff treated cookie-cutters. Vanesa seems like a perceptive and sharp person.

    When you talked about autistic people as those who you most easily understand/speak your language, it made me think of Donna Williams and how she felt at home with Shaun and Perry towards the end of Nobody Nowhere. How she understood them and they understood her.

    My take away message will be something like “The existence of autistic people did not create these places”.

  2. I wish I had “Lessons on Inclusion” but it went away a long time ago, and the files don’t exist anymore.

    Vanesa was, indeed, extremely perceptive and quite politically as well as socially astute. She was the first person in one of those places I bonded much with and the last person they wanted me to bond with.

    I occasionally wonder what happened to her but most of the time I don’t want to think about it — I’m afraid in the end somewhere down the road they might have convinced her they were right, and the idea of her being warped by the system like that really scares me.

    In institutions of various sorts (including just plain ordinary schools), people find ways of talking to each other that whoever’s in charge can’t see. It’s like a higher-stakes version of whispering in class and doing things behind the teacher’s back.

    And yes, meeting autistic people is much like that. Even when there’s not total understanding, there are at least a few, often many, shared systems that non-autistic people don’t share. I think non-autistic people are so used to sharing those systems with each other, that it’s easier to see the fact that misunderstandings still occur, and that shared relating is background knowledge. With autistic people, very few of us grow up around enough of each other that we are used to reading other people or being read by other people. So it is often a bit of a shock, to find oneself in detailed two-way nonverbal communication with someone.

    (Although I notice it’s not just autistic people — I seem to have picked up an ‘institutional language’ that’s fairly universal, as well, and a number of people with similar neurologies to autism can also do the two-way communication thing with me. The categories of course being very imprecise.)

    And “The existence of autistic people did not create these places” is a good message. I don’t know quite when I realized that those places weren’t inevitable results of my existence, but it was important.

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