thoughts from a recently-diagnosed autistic queer feminist

Archive for the ‘Life’ Category

Anthea to ‘I Wish I Didn’t Have Aspergers’ : #AutismPositivity2012

I’m tempted to start this post talking about some of the awesome things that have happened in my life, and reassure you that they will happen to you too. It’s tempting to talk about my job and how I saved up to put a deposit down on this house which I’m so slowly renovating and how fantastic it is that I got a wall of bookshelves up this weekend. I could tell you about how I enrolled in an MA this month, about the fiction I’ve had published, the political activism I’m involved in, my partner of six years and counting, the friends I’ve made. I could say that awesome things have happened for me, and they will happen for you too.

I’m pretty confident awesome things will happen for you, though they may bear little or no resemblance to those that have happened for me. But I remember being a kid and reading these stories of Outsider Isolated Children and every time I started to identify with them they would suddenly become popular or beautiful, or they would discover a secret sporting talent. I never did, and it just made me feel even more alone.

It’s not politically sound, either, to rely on such achievements as indicators of human worth. The fact that it has taken me a fuckload of hard work to get where I am today does not negate the fact that I’ve had a fair bit of luck as well. Growing up in a book-filled household, having the ability to access a university education and my racial background and the passport I hold, amongst other things, have made these a lot easier than they would otherwise have been. But even that’s not really the point. You’ll do what you can. You’re a person irrespective.

You’ll do what you can, and there’ll be some things that will come easily, some you’ll never manage, and many that will be harder or take longer than they do for other people. Many times you’ll find alternative ways of reaching the same place, or that the place you thought you needed to be is actually not where you want to go at all. And there’s one important thing you have:

You know there’s something wrong.

Perhaps those weren’t the comforting words you expected. Perhaps that’s because you think the thing wrong is you, or rather you’ve mentally sectioned off part of yourself to be some bouncy fuzzy monster called Aspergers that claws at your head and chases away people who come near you. And you wish it would just leave you the fuck alone.

But there’s no monster. There’s just you, you and the world you live in.

In Philip Pullman’s His Dark Materials Trilogy, there’s an alien race called the Mulefa. They live in a world covered with smooth volcanic tracks, and they have spurs on two of their legs onto which they fit seedpods from trees they cultivate. Propelling themselves with their other two legs, they can whiz along the tracks at high speed. It’s all pretty awesome.

But imagine if one is taken to a world where there are no volcanic tracks, only muddy fields. They move slowly and keep sinking in them, and their spurs catch on tree roots, injuring them. There are no seedpods to be found.

Well that’s you, about now. You’re hacking away at your spurs, trying to make them go away, trying to make yourself normal. You’d like to go looking for seedpods, but you’ve been told that’s a stupid thing, a childish thing, that you’ll be using them as an excuse, that they’ll make you even more abnormal.

There are some crucial differences, of course. First, the problem is our world is more social and political structures, rather than the landscape. That may seem harder to change, but I promise you, volcanos are pretty scary things to mess with. Second, the way people like you and I are excluded is no accident. It’s systematic. And there are lots more of us, excluded and oppressed under different pretexts, purely to sustain the fucked up economic system that benefits not very many people at all.

It’s okay to feel shitty. We all do sometimes. But when you do, you can fight yourself, or you can find the problem. The former may seem easier, but the latter will have prettier results in the long run. And there’ll be lots of us on your side.

And keep cultivating those seedpod trees.

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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.

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.

Starting Point

I have lots of options for a starting point, but I’ll pick one and work forwards, backwards and sideways from there. Just under a month ago I received, officially, the answer I had been looking for for a long time: a diagnosis of Autism Spectrum Disorder, specifically Asperger’s Syndrome, along with anxiety and previously-diagnosed dyspraxia.

In the weeks since, as well as swerving drastically between bouncing off the walls in excitement and relief and freaking the fuck out, I’ve done two main things.

The practitioner who assessed me warned about telling people too soon. It was probably good advice in general; I’ve achieved those superficial marks of neurotypical success (partner, job, university degree, home ownership, friends) and would, therefore be exposing myself to the twin perils of disbelief and discrimination. It was probably even helpful advice for me, in that it encouraged me to think carefully and hold off a little while at least. But it was, ultimately, advice that I was never going to take.

I came out as queer at the age of twenty. That was about fifteen years after I first knew, and almost as soon as I did so my life got better. Being closeted was a horrible thing. I make no judgements about people’s decisions – sometimes it can be a lifesaver, and I like (most) queer people being alive, but it felt bloody awful. And now, here, was my second chance. And I wasn’t going to make the same mistake again.

My partner was at the assessment with me (and indeed was one of two people to most strongly suggest AS to me) and I told a few close friends pretty much immediately and my parents a week or so later (they reacted by telling me that another family member had also been diagnosed that week – the diagnosis was no surprise, but the timing was). Then it was just everyone else to worry about.

It took a fair bit of stressing and worrying before I bit the bullet and posted to my Facebook and Twitter accounts. People wereawesome. I got a fuckload of support (as well as a couple of people contacting me to say they were also on the spectrum) and felt really boosted in my confidence.

The only place I’m not out is work, not because I think it would cause significant problems, but because for various reasons I don’t feel like having that conversation just yet. I’m aware, though, that having told so many others it may well become known. I’m okay with, and prepared for, that.

The other thing I’ve been doing is reading. I left the appointment with a reading list (which was exactly what I needed) and was almost immediately downloading Kindle editions to my tablet (somewhat to the dismay of my partner who mutters things about paper and libraries). I’m a bit of an information addict, and I’ve been motoring through them as well as various online sources, and accumulating a bunch of notes.

Words have always been my ‘thing’, reading and writing them. So this blog is really for me to explore the myriad of things I’ve been discovering. My interests are more social/political than medical/individual, and I have no idea how much interest it will be to anyone else, but if it is then welcome!