thoughts from a recently-diagnosed autistic queer feminist

For those who can’t watch it, the video above is a song listing some of the things infamous British ‘newspaper’ The Daily Mail claims cause cancer:

Age, air, alcohol, aspirin, calcium, ham, honey, eggs, dogs, dieting and soup. Being a woman, Being a man, bubble bath, food from cans, being black, wearing bras, left-handedness, speedy cars, oestrogen, climate change, baby food, the menopause, beef, beer, pizza, pork, cereal and worcester sauce, childlessness, children, vitamins, bacon, chocolate, retirement, deodorant and facebook!

Unsurprisingly, I think of this every time there’s a discussion around what causes autism. And I’ve been having a few of those discussions in various forums, so I’m going to try and consolidate some of my thoughts into a blog post.

First, I don’t consider the cause that important. I can think of a few possible reasons for wanting to know the cause: development of a cure, early diagnosis and therefore access to support services, to make a political point, to stop the spread of misinformation or for pure interest value. Well, I don’t believe a cure is possible and wouldn’t believe it if I did. The early diagnosis has some currency, but the age of diagnosis is much younger than it was, and seems to have achieved that by better awareness. To reduce prejudice? Reminds me of the people in the queer community who insist sexual orientation is ingrained because as soon as people realise it’s not a choice or damage by environmental factors, homophobia will end. “Because once people realised that skin colour was genetic, racism disappeared,” the argument goes. Stopping the spread of misinformation is admirable, but the vaccine link has been disproven (no, I don’t want a discussion about this) and that doesn’t seem to have stopped that one being trotted out at every opportunity. And yes, I am interested in the subject, but not half as much as I am in other aspects.

So there’s pretty limited reason for all this research into a possible environmental cause, as far as I’m concerned. On the flip side, this constant looking for causes does a fuckload of harm, harm that goes beyond simply those causes being wrong, or that it diverts attention from other areas. I find it quite worrying that so much of this plays into food moralism, and that given the risk of negative reactions to “food pickiness” resulting from sensory issues leading to eating disorders, children are being further restricted by being placed on GFCF diets irrespective of whether or not they show actual signs of intolerence, simply because they’re autistic. But the harm is far more fundamental than that.

At the heart of it, any attempts to search for a cause, irrespective of the nature of it, are a pathologisation of autism. Rather than looking at why some people are autistic and some are neurotypical, looking for a cause presents autism as something a person has or lacks, an addition to or deficiency in, a standard person who is by definition neurotypical. It’s like how the body we generally consider male is considered standard, and a female body is a male body without the genitalia (and the genitalia that women’s body has ignored). Our lives would be easier if the dominant view was more that some people are AS and some are NT – the latter are the majority and better accommodated in the world, but no more standard.

Second to the discussion about causes is the one about triggers, about environmental aspects which make our autism better or worse. I’m not talking about things like sensory overload but things like food or medicine that accentuates autistic aspects or a person. I’d dispute the idea of making autism better or worse; people are autistic, and they have different abilities and are disabled in different ways. It doesn’t make them more or less autistic.

Still, I understand the point being made here. There are foods I have limited tolerance for. Large amounts of one send my anxiety through the roof – and my own limited reading indicated this is likely to be related to my being autistic. Would research into this be helpful? Quite possibly. But as long as we view autism as a separate _thing_, autistic people are excluded from much research into (for example) anxiety because they have an additional “condition” that would complicate the results.

I know I’m going to have to keep saying this for the rest of my life, but I wish all those people who were so keen to ‘unlock the mystery’ and find a cause or cure or whatever else would show a little more consideration for what they actually can do to make things more accessible. Things like turning music down, explaing a process beforehand, turning up at an agreed time. Without the stress of those, we’d have more resources to speak for ourselves, as well.

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.

  The following was recently published in ‘Thinking Differently’, the quarterly newsletter of Autism New Zealand Inc.
  ‘Your Letters’
 

  This is an excerpt from a letter we received from one reader, who had been married to a man with Aspergers Syndrome. She discovered he’d been sexually interfering with her 11-year old twin daughters and eventual divorced him.  The letter is extensive, but she presents a valid point of view, based on her experience.

“The Law is there to protect others from those behaviours. Aspergers should not be exempt from the law or being locked up. I do believe many serial killers and rapists have Aspergers. They can be cunning and devious. Aspergers do commit crimes, probably more often than normal people. We matter too.”

H—- F— (abridged)

I’m angry and saddened that it was written, more so that Autism New Zealand saw fit to publish such an offensive letter whilst stating that it presents ‘a valid point of view’. But I’m perhaps most frustrated at the way it has set the agenda, that to counteract this it feels necessary to scrabble round for statistics saying that we’re not any more likely to murder or rape than “normal people”. I don’t want to have to come up with examples of how we’re the good “Aspergers” who pay our taxes and follow the law and have never had so much as a speeding fine. Those aren’t the conversations I want to have.

I don’t think there’s any way to usefully engage with the idea of ‘serial killers’. Is regular murder not shocking enough? There really aren’t enough serial killers out there for this to be a meaningful discussion. I don’t believe aspies are any more likely to be rapists than the general population. If there’s evidence of a statistically significant disparity, that needs to be looked at, but in a country and world with the rates of rape and associated violence that exists, along with the terrible conviction rates and limited government willingness to do anything about either, I feel there are more important things to engage in that idle speculation about who does it most.

But let’s leave aside the serial killers and the rapists for a second. Let’s talk about the aspies who end up in the justice system for vandalism, for theft, for getting into fights or retaliating against violence. Lets talk about those who have not done what they’re accused of but can’t stand up to questioning or navigate the legal system (as a teenager I admitted to shoplifting I hadn’t done (fortunately avoiding a criminal charge) because security guard told me I had no choice but to admit it and I believed that, literally, and because I didn’t see any way anyone would understand my compulsive need to read song lyrics anyway). If the main backbone of the conversation is that statistically most of us are law abiding, if those of us who can go round flaunting our jobs and our taxpaying and our relationships and our degrees and our mortgages and our nice clean criminal records, then we’re feeling good about ourselves and changing absolutely nothing.

So instead, let’s have a conversation about a world which makes things unbearable for us, and when we lash out, potentially at people or at objects, the solution is not to change the environment to prevent a reoccurance, but to punish us. Let’s have a conversation about how difficult legal systems are to navigate, how atypical facial expressions or eye contact are so often assumed to mean guilt, how a neurotypical person can sometimes avoid a charge for a minor offence with a “sorry mate” whilst pedantic questioning of language and the nature of the offence is almost certainly going to lead to an arrest. Let’s talk about how atypical movement or gestures or reasons for going to places is viewed as grounds for suspicion, how silence is viewed as stubbornness or lack of co-operation, how literal interpretation of questions is viewed as rudeness. Let’s talk about how the effect is doubled, tripled for people already disadvantaged in our legal system.

Let’s not be afraid to have a conversation about prisons. When people say we don’t lock up autistic people/mentally ill people/intellectually impaired people, I always want to ask what the hell they think prisons are other than a dumping ground with  disproportionate rates of all of the above. And I get why we’re afraid to talk about this – we’ve spent so long trying to say that we’re good people really, we’re not scary people, we could be your neighbour. But we need to challenge the assumption that there’s a perfect correlation between ‘in prison’ and  ‘bad person’, or that crimes exist in some kind of vacuum as an indicator of someone’s morality, rather than being socially constructed.

Yes, it is worth challenging such obvious bigotry, the inaccruate assumptions, the stereotyping and the offensive language. And then let’s move on. If we’re talking about Aspergers and crime, let’s talk less about parents who murder autistic children and are then treated with sympathy, about autistic people who have been raped and are then told their non-verbal communication is inadmissable in court. Let’s talk about how some cunning and devious aspies can apparently get away with everything (something I’d guess would have far more to with the numbers who get away with child abuse generally) and more about how the legal system fails aspies on both sides.

Framing

Today I read a notice of a vigil in memory of an autistic man killed by a family member. The words from it which caught my eye werem’t the ones you’d expect:

“and other victims of domestic violence”.

And it occured to me how rarely I’d see that term used to describe cases like these. I’m aware there is cricism of the terminology itself and I’m insufficiently familiar with the arguments to enter into that discussion, but I do think we need to treat acts of violence against disabled people by family members as falling in the same general category as other violence within the home and family grouping.

There’s a pattern at the moment, and it isn’t good. Someone will defend the abuser on the grounds of there being insufficient services available to them and how they just got desperate. Others will agree. Anyone who wants to advocate for the person on the recieving end can’t even mention the service provision because (understandably) they fear it will play into the idea that it was in some ways justified.

But it’s obvious that in a world where people can’t access needed resources, tragedies happen. And that something needs to be done about it. And that doesn’t negate from the fact that these acts are inexcusable, that there is a clear aggressor, or that our support should be for the person on the recieving end.

I’ve heard many people talk eloquently and knowledgably about the circumstances in which domestic violence is more likely to occur. About the stressors which aggravate it. About how actual change in our society – not just violence at the bottom of the cliff type measures – is the way forward. And they do so without making excuses, without victim blaming. Without ever suggesting that things are okay.

So much of the groundwork has already been done, but some people have been left out of the discussion. We need to change that.

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!