thoughts from a recently-diagnosed autistic queer feminist

Posts tagged ‘diagnosis’

Autistic?

Technically my diagnosis is Autism Spectrum Disorder (Asperger’s Syndrome) (as well as related anxiety and dyspraxia. When it was confirmed, the Asperger’s Syndrome part took some processing, but I was reasonably comfortable with it. Describing myself as autistic, though, was another matter.

It wasn’t that I believed the negative stereotypes, at least not rationally. I’d been reading blogs such as Ballastexistenz, Journeys with Autism and, more recently, Autistic Hoya, all of which prominently use the words autism/autistic, all written by intelligent, articulate women who if I someday manage to write like, I’d be bloody proud.

And it wasn’t even that I believed that mattered. I hate the idea that people need to prove themselves in some way for me to say “I’m one of you, this is our fight”. I’m not into leaving behind people who don’t meet some arbitary standard, of making intelligence/prettiness/friendliness or whatever some prerequisite for the rights others take for granted. But maybe… maybe I’d internalised some of that.

This is, of course, coming at a time when it is looking likely that in the near future those diagnosed today as AS will (if diagnosed at all – a separate but worrying issue) be diagnosed with ASD. Personally, whilst being mindful that whilst sytems are set up the way they are some people are reliant on it, I couldn’t give a fuck about the DSM. Saying I’m not Aspie because they’re taking it out of the DSM makes about as much sense as saying everyone became straight when they took homosexuality out of the DSM. Nevertheless, it does to some extent inform how we speak, how we selfdescribe, how our communities are defined.

Anyway, something’s changed. I’ve started describing myself as Autistic. Not all the time – if the conversation’s about AS specifically, I’ll describe myself as aspie. If I’m identifying myself purely for that purpose, I’m more likely to talk about AS. But if I’m talking about autism generally, “as an autistic person” has started rolling off my tongue quite naturally.

I’m not sure what happened. It just changed. I guess I got more comfortable with myself.

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Almost diagnoses

Continuing with the autobiographical side for a bit. My diagnosis was officially made at the age of 27 – and anecdotally this is earlier than for a lot of women. I know some who were diagnosed as children, but they tend to be a few years younger than me. But although I was not sure what the result would be, even during and after the assessment, it didn’t exactly come out of the blue. I’m writing today about times when I was almost-diagnosed. I don’t mean the continual signs which have existed throughout my life, from the school reports that basically read “very bright, doesn’t play well with other children, needs to stop the tantrums” through my habit of sleeping under the mattress, but the times actual recognition was oh so close.

One

I’m about eleven, reading the newspaper at the dining table, spilling milk on it, trying to fold it back to make it more manageable, struggling with the width that is far wider than my arm span. There’s an article about Asperger’s Syndrome- and even though my family buy several, years later I will be able to picture the layout and typeface of the article clearly enough to work out which one it is. There’s a picture of a blonde-haired boy and his mother. I read. I start moving uncomfortably. My heart’s racing. This seems familiar.

There’s a sidebar column of signs that your child may have Asperger’s. I check them off. They all make sense until I get to one that says something like ‘doesn’t make up stories’. I’m not sure if I’m relieved or disappointed, but I write fiction obsessively; I completed a novel manuscript a year or so ago, and have books full of short stories. I turn the page. No answers here.

Two

Mid to late teens. I’m crashing badly. I’m at once desperate for human contact and have no idea how to handle it when I get it. I’m a queer teenager in a very homophobic country, and the violence I experienced in middle school has affected me in ways I don’t understand. The short form is that I end up with referrals to mental health services. They don’t help.

I do have mental health issues at this time (they don’t recognise what they are either). There are problems with the service that would affect anyone. But for me it’s awful.Counselors give up on me because they think the fact I don’t see things the way they do is me trying to ruin their lives. I argue with psychologists. Psychiatrists make really dubious diagnoses and put me on inappropriate medication.

I leave as soon as I can, and avoid doctors except where absolutely essential from then on.

Three

Often I will read and understand things, but make no connection to myself for a long time even when it’s seemingly obvious (this explains why I was, for a time, involved in queer rights activism while still thinking I’m straight). One of the connections happens when I’m twenty-four or so. I’m on my way to work and there are bus replacements for the trains. It doesn’t seem to have occured to anyone that as buses are smaller than the trains we might need more of them.

So the bus is packed and I don’t get a sea. I can’t stand – I’ve never been able to stand – so I sit cross-legged on the floor and watch the road. And suddenly it’s obvious. I’m dyspraxic.

When I start reading, everything makes sense. I’m diagnosed the following year, in an assessment arranged by (and more importantly paid for by) the university. It’s a quick, not very comprehensive one, but I’m pretty sure of the answer anyway. That’s as far as it goes, but it helps.

Four

I’m almost uncertain whether to include these, because rather than being dead ends they eventually do lead me to an answer. I’m 26. I’m in Europe, visiting family and friends. The subject comes up with my parents, briefly – Asperger’s is suspected in other family members. Then I visit T, a high school friend. He lends me Tony Atwood’s ‘Complete Guide to Asperger’s Syndrome’. This is what he has, he says, and I do too. He has absolute confidence in his assessment. I read chunks of it sitting on his rooftop in Malta drinking limoncello. I’m really not sure. A couple of months later my partner is lent a copy of Rudy Simone’s ‘Aspergirls’. She reads it on the plane home from Auckland and when she unpacks her bag she hands shows it to me and says she’s pretty sure it was written about me. It’s looking likely.