The social model of social disability

Or: Neurotypiconormativity.

If you've seen my previous posts on the subject of Asperger's Syndrome (and autism spectrum conditions more generally), you'll know I'm exceedingly sceptical of the "science" behind it. You'll also know I'm fond of impressionistic ranting. :) Here, I'm attempting to set out my case in a slightly (but only slightly) less ranty and slightly more objective fashion.

[Mild] Asperger's could be described as a social disability: it hinders effective communication and socialising between those who have Asperger's and those who are neurotypical. And, indeed, that is the main way in which it's "disabling". When Science tries to quantify such conditions, it's taking the side of the medical model of disability - the model which says "Something is wrong with you and needs to be fixed".

I think that Asperger's (like many other "neurological conditions" and mental illnesses) desperately needs to be viewed using the social model of disability - the model which points out that if society happened to be organised differently, your disability wouldn't be a problem - i.e., functionally, you wouldn't be "disabled" (here's a primer on the pros and cons of both models, for those who would like more eloquence). Because, in my opinion, the medical/scientific model not only causes needless distress to the people it identifies as "disabled", but it also, well, just doesn't really make much sense.

Let me explain...

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- The central tenet of an Asperger's diagnosis is this: "your brain is Wired Differently [from those of neurotypical people]".

- Therefore, even if you have improved in leaps and bounds since childhood to the extent that you have learnt (albeit with difficulty) most "normal" social skills, you still have Asperger's - you never grow out of it, and if you exhibited it in your childhood then you will always still have it, even if it no longer impedes your daily or social functioning.

(- Side note: Asperger's does not solely affect your social functioning, but in dealings with neurotypical people it's the aspect that's likely to cause most distress; all the rest is just internal quirks. After all, I lived quite happily for 24 years without realising that I have "impaired (social) imagination", i.e. although I can be quite creative and I write a lot, I can only really invent variations on themes I've already encountered, rather than pulling plots out of thin air.)

- My argument is this: Humans do not come in one-size-only. We all differ from the "template" (and I use the word in a loose sense) in various ways: different height, different hair colour, different nose shape, different IQ, different motor skills. I believe the label "neurotypical" means about as much as the label "brunette" - brown may be the most common human hair colour[1], but it comes in many subtle shades, and it isn't inherently "better" or "more normal" (the latter implying the former) than, oh I don't know, ginger. :)

[1] It isn't. Black is. At least, according to a Wikipedia article with no concrete references (apparently the Wikipedian has a vague memory that it was in National Geographic once). Sadly there is no cute word for "black-haired", so poetic license reigns.

- Furthermore, there are many things problematic about the diagnostic criteria for Asperger's. Each one of the Asperger's traits is also found to some extent among the neurotypical population - it's only when they occur in combination that they lead to the diagnosis of a "syndrome". I reckon that's only to be expected, when everybody's brain must vary infinitely in the way it's wired. We all know someone who's bad at reading people's moods, someone else who gets upset when eir routine is disturbed, someone else who has a remarkable memory for car numberplates, someone else who has a favourite subject about which ey will not shut up... so it's actually quite common for someone who would not achieve a professional diagnosis of Asperger's (i.e., someone who'd be labelled "neurotypical") to score within the autistic-spectrum range on Baron-Cohen's classic test (which is why it's not a reliable tool for self-diagnosis).

- However, the way "Asperger's Syndrome" (and other autism-type conditions) is presented is as a binary distinction. There are only two kinds of brain: "neurotypical", or "on-the-autistic-spectrum". Asperger's is at the high end of the spectrum, near "neurotypical". Except "neurotypical" isn't on the spectrum, because it's on the other side of the binary. Um, the binary between one thing, and another thing that's a spectrum. Yeah. Right. Isn't it likely that "neurotypical" is also a spectrum, going from "outgoing and bubbly" to "shy and geeky" to the point where the "shy and geeky neurotypical" would score highly enough on the AQ test to self-diagnose (incorrectly) as neuro-atypical? Isn't it likely that the spectra blend in the middle to make one big spectrum of just people?

- Well, no, it can't be, because of all that concrete neurological evidence about neurotypical brains and neuro-atypical brains, and the obvious ways in which they're different. Right?

"Unlike many other brain disorders..., autism does not have a clear unifying mechanism at either the molecular, cellular, or systems level." (http://en.wikipedia.org/wiki/Autism#Mechanism)

Right. Okay. So there's actually nothing that researchers can point to in the way of brain structure or brain functioning that says "Yep, that's an autistic-spectrum brain, and that's a neurotypical brain, and never the twain shall meet". This is why my assessment involved not one speck of empirical measurement of brain activity (e.g. MRI scanning), and relied solely on a neurotypical (we presume) clinician chatting with me and interpreting my responses. There's actually nothing that gets around the fact that all through your life your brain is changing, developing and creating new neural pathways with the result that perhaps one day, with lots of hard work reinforcing those brain connections that govern social interaction, the Asperger's child will grow into a neurotypical adult.

And yet they tell me, they told me to my face, that I've "clearly spent a lot of effort learning to function socially", to the extent that I'm "masking who [I] really am inside". In other words, I haven't learnt anything - I'm still a socially hopeless Asperger's case, and any appearance of being friendly, sociable or empathetic is just me blagging it.

Do not we all spend a lot of effort learning to function socially? Do not we all have to mask, to some extent, who we are inside? Do not we all regularly have to swallow down our impulses to be impolite or uninterested or self-obsessed or introverted, in order to make sure the social wheels stay oiled? Seriously. Neurotypical people may find it easier and more intuitive to learn social interaction than Asperger's people, but the way Asperger's is presented borders on implying that all neurotypicals are homogeneous saintly paradigms of effortless social perfection...

- So in essence, this is how Asperger's was discovered:

• Ooh, that kid's a bit odd. So's that kid. That kid too, although at least he talks to people and doesn't just sit in the corner rocking all the time. In fact, he talks a hell of a lot, in a really boring way. How odd he is. He probably has a Syndrome.
• Lots of people have this Syndrome! It causes them not to be able to interact properly with normal people like us.
• This Syndrome must be caused by something in the brain! Let us hypothesise that Normal brains are inherently different from Syndromey brains, and look for what the difference is.
• We haven't found anything in the actual brains yet, but it must be there. And if it's there, that means it'll never go away. What a shame. I'm so glad I'm normal.

(Fun game: substitute in the words 'male' and 'female' for 'normal' and 'syndromey', for hours of weakly-argued, poorly-thought-out satire on social constructs of gender!)

Whereas this is how it's presented:

• We know for a fact that there is something weird about your brain. We say this with a conviction that implies that we've measured it empirically. The weirdness will never go away, and any attempt you make to interact properly with normal people will always underlyingly be inauthentic.

I could live with that diagnosis (although it would be fairly upsetting, see previous post) if it weren't for the fact that it's so obviously based on a medical model of disability (i.e. "if you are not normal, there's something wrong with you that needs fixing, um, except we don't know how to fix it, whoops") rather than a social model (i.e. "the difficulties encountered by people who are 'not normal' are a product of the way our society constructs 'normality', not of an inherent inferiority").

Show me something that's concretely, unchangeably unusual about the wiring of my brain, and I will accept your diagnosis without fuss. Show me that I don't fit into society right and claim it's neurological, and I'll show you something that's wrong with society.

Just Diagnosed: a post-assessment rant

This follows on from Autism: The Extreme Male Chauvinism Theory, and this post will make more sense if you've read that one. For the record, not once in my assessment was my genderqueerness mentioned, not until the very end when I brought it up after the assessor talked about some of my traits being characteristic of "females with Asperger's", and even then she had little to say about it - in fact, wasn't even aware of the FTM/autism research I quoted in the other post.

(What she did have to say was that, although The Research points to autistic spectrum conditions being more common among "males", she's seeing more and more "females" coming to be diagnosed, and had been chatting about this with Baron-Cohen. "Do more research then, I guess," I said. "Yeah, Simon, there's your answer," she laughed.)

Again, this is not a sympathy-post, this is a "this is what it's like, guys" post. If your immediate reaction is to post a comment saying "But that's really sad, cos I think you're awesome!", then a) I love you dearly, b) don't feel you have to bother, and c) I'd just like you to stop and think about why that's your reaction, and what the implications are for all this...

:) xx

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I'm proud of who I am and I wouldn't want to be any other way - if this is what mild Asperger's Syndrome looks like, well then, sucks to be neurotypical, I reckon. A long time ago I decided that "being me" wasn't easy in some ways, but in other ways it made things so much more awesome that it more than made up for it. I wouldn't like to be like the people I don't understand, the people who don't get me, the neurotypicals, I suppose.

But what upsets me is the idea that all the great stuff I have in my head just comes from being on the autistic spectrum... because it implies that all this great stuff will only make sense to 'other neuroatypicals'.

I love looking at the world at a slant, I love taking my big hammer of overanalysis and smashing apart received opinions, I love being able to see that the world doesn't make any sense and it's all silly and arbitrary and ideas like gender and money and, uh, neurological conditions are just random social constructs.

But more than that, I want to be able to explain all this great stuff to other people, tell them my so-crazy-it-just-might-work ideas of a better world. And if it just-full-stop-won't make sense to neurotypical people... then there's no point trying to explain, and there's no argument I can make to say e.g. "binary gender doesn't exist" which wouldn't just come out as "neuroatypical people don't understand binary gender", and there's no hope for my better world, because it's so crazy it just won't work.

This is what I've always feared, since way back when "I might have Asperger's" wasn't a credible reality, it was just my mother's parrotted obsession. I've had periods when I've become upset and frustrated and depressed to think that nobody will ever understand what I have to say; not on my own behalf, because I have an amazing support network of the most fantastic friends I could ever have hoped to meet, but, well, on behalf of everyone else who can't understand, I suppose. I know this all sounds horrendously arrogant, and I apologise, and if you are reading this I fully expect you're the kind of person who can understand, whether you're "neurotypical" or not - I'm just processing all these thoughts within the framework of the classic binary "neurotypical vs on-the-autistic-spectrum" distinction, partly to make the point of how it's total bullshit. But now I'm arrogant and digressing.

So after over a decade of thinking "I might be Asperger's" and understanding all that it entails and watching myself incessantly to make sure I learn, to make sure I try not to be "too Asperger's", to make sure I practise until I can actually connect with neurotypicals and make myself understood... after all that... what has a positive diagnosis done? It's taken away my motivation to try, to learn; it's presented me with the bold fact "Your brain is Just Not Like Normal People's", it's made me give up trying to understand these weird 'normal' people because apparently my brain makeup means I never will.

After years of trying my best to work on my socialising and my communication, in the dim awareness that I might have a neurological condition which hampers socialising and communication, I've been told that, yes, I actually do have a neurological condition which hampers socialising and communication... and so, what's the point of trying my best to work on my socialising and my communication?

I will accept that I fit the diagnostic criteria of mild Asperger's Syndrome. But I will not accept that these criteria make any sense within a social model of disability. Because to do so would be to give up hope. And that would be really, really stupid.

Autism: the Extreme Male Chauvinism theory

Not one to let facts get in the way of a punchy title, me.

I've just been offered an appointment with the Adult Autism Centre. This means that me and my mum between us managed to scrape together enough "signifiers" in our paperwork for them to think it worth their while to bring me in and attempt to diagnose me properly.

Let me explain at this point that I'm not convinced that I have Asperger's; if I do, I don't find it a hindrance in the least (at least not these days), and either way, I'm not even sure I believe Asperger's is an actual thing (at least not to the very low level at which I might have it). And I'm not just writing to Autism Centres in the hope of gaining the right to sew yet another Minority Membership badge onto my woggle. I got myself referred to them purely to settle a point: my mum has told me all through my life that I'm "probably a bit Asperger's", without ever going to get me diagnosed or do anything more constructive than just give me a complex about my inability to function socially, and I just wanted to settle the matter once and for all. This is not a sympathy post, it's a "Simon Baron Cohen wtf ffs?!" post.

My intrigue regarding the topic of autism thus once again piqued, I bimbled around on Google and found this: a paper linking FtM transsexuality with autism. It's not like I wasn't expecting Science, as embodied in Simon Baron Cohen and his "extreme male brain" theory, to declare my gender identity a function of my neuroatypicality (if applicable) or vice versa. But even so, it triggers my natural defensive response to having my identity put into question. Particularly when one of the things I had scrawled on my initial paperwork was a small diatribe in the "Sex" box about how I'm female in biology but not in gender. I wonder how much my declaration of "I AM GENDERQUEER!!!!!11ONE!" contributed to their decision to offer me an appointment.

My problem with the "extreme male brain" theory is similar to my problem with most attempts to categorize people according to their brains (e.g., the very concept of Asperger's Syndrome itself). The thing is, right... people have brains. And all these brains are usually quite different. Thus people are different. It's not really surprising if people who do science tend to be "more autistic" than people who do arts, because what you've done there is you've labelled one of these infinite points of difference the "autistic" point, and then if you measure any two people, let alone two groups of people, with respect to their distance from this point, one of them will turn out "more autistic" than the other.

And the concept of a "male brain" or a "female brain", let alone an "extreme" version of either, is a self-fulfilling prophecy. If you are a "typical male", you will have this kind of brain. If you are male and don't have this kind of brain, you're not "typical". Thus the many studies reporting that pre-hormone-therapy FtMs have a "more typically male" brain structure sound good at first - hurrah, scientific validation, we're ACTUALLY really men! - but on closer inspection, the message is more depressing.

The message is that all men have a certain kind of brain and all women have another certain kind of brain, and if you were born "female" but you don't have a "female" kind of brain, you're "not really female". I would like to state that, whatever my gender identity, I am (as far as such things can be defined) biologically female, and this is the brain I have. It is possible for a woman to have a "male-type" brain, or vice versa. Attempting to homogenise three billion people into one "typical female" brain pattern, and then throwing out those who don't conform to it as "atypical", is, well, bad statistics, surely? Take an "average" of three billion people and you're likely to get something pretty meaningless.

See, if you take an "average" of ANY group and compare it with the average for another group, you're likely to find a difference - because people are different and their brains are different and if you attempt to homogenise one set and then another set you will always get a difference. If you took a representative sample of hockey players and a representative sample of ginger people and got them to do this kind of test and averaged out the results, you'd probably - nay, definitely, though not necessarily to a "statistically significant" degree - find that one group came out as, on average, more "male" (i.e. more systematizing) than the other, which would obviously come out as more "female" (i.e. more empathizing).

So what? So bleedin' what? Scientists aren't going to sit down and test hockey players and ginger people and then declare that there is a "typical hockey brain" and a "typical ginger brain" and we are all on a spectrum from hockey to ginger. They're simply not going to try and make generalisations about such arbitrary groupings. But since "male" and "female" are the one big accepted set of arbitrary groupings, study after study after study will focus on this "binary difference". Sure, there may be observable differences between "male" and "female" brains. But there are probably observable differences between "hockey" and "ginger" brains: the hockey players might be more confident because of their physical prowess, the gingers might be more neurotic from being ribbed about their hair colour. The nature/nurture debate is still wide open with regard to so many other characteristics - criminal tendencies, high intelligence, gingerness-induced neuroticism - so why is it so firmly closed whenever the hallowed arbitrary grouping of binary gender is mentioned?

In their haste to document and catalogue the crazy, inescapable Mars-ness and Venus-ness of "the sexes", everyone seems to ignore the possibility that "maleness" and "femaleness" can be environmentally conditioned - gender is a social construct whereby those of us displaying [fe]male sexual characteristics are prodded throughout our lives into behaving how a "typical [fe]male" behaves. And it's no wonder if our brains soften under that pressure - or harden against it. The last thing we need is for Science, wearing its extreme-male-brained Simon Baron Cohen face, to come along, chew up our socially conditioned gender differences and spit them back out at us disguised as "inherent sex differences" - thus adding to that social-pressure concept of the "typical [fe]male" in an ever-amplifying feedback loop.

(Completely unrelatedly, did I mention how much I want this book for Christmas?)

Do you know what the "FtM transsexuals already have male brains!" theory says to me? It says: at least some of the female-assigned people who come to see themselves as male-gendered might do so because society affords them absolutely no way of expressing themselves as female, when their natural way of thinking and behaving is traditionally - and "scientifically" - male-coded.

The Adult Autism Centre might attempt to smugly, scientifically claim that my Asperger's tendencies are just a symptom of my gender dysphoria, or that my gender dysphoria is just a symptom of my Asperger's tendencies. Either way, it's not the kind of "science" I'm keen to subscribe to.