Right! Now that I have some of these OPINIONS out of myself I can go straight back to squeeing over ink and howling at the moon. I’ll just-
[Cantatrice looks at bottle of ink. Looks at article. Looks at floor. Looks back at ink. Puts ink down and wanders off to the High Stable to fetch her companion.]
And you know what gets me going don’t you. Ain’t nothing like an article that’s sort of “well, DUH” but also “yeah but it’s not as simple as that. No it’s REALLY not as simple as that. Also fuck you for paying TERFs to spew bile all over your pages.” (Not that this article is especially TERFy. Just as a general principle.)
So this is an article about those mysterious autistic girls who somehow manage to get diagnosed at only a quarter of the rate of the boys. That this happens is indisputable. The thing people do like to argue about is whether this happens because boys are more likely to be autistic or because girls’ autism goes unnoticed. Goes unnoticed? Sure. Mine went unnoticed for the entirety of my childhood so I can believe that.
This article talks about how girls and women use camouflaging – that is, copying the behaviour of neurotypical peers – to disguise themselves as neurotypical. We make eye contact, we avoid stimming, we work on responding to others in neurotypical ways even if they don’t really make sense. I was a major, full-time camouflage devotee as a kiddo and a teenager. I felt massively out of my depth in all sorts of situations where I was required to make my own decisions, from what clothes I wanted to wear, to which people I was supposed to find attractive. I think this obsessive copying of others, and the terror that went with it, is what made me so determined to be however weird I fucking want in my 30s because I am out of fucks to give. Why am I wearing a floor-length evening gown to work? I DUNNO. TRY ASKING THE FUCK VOID, MY FRIEND.
The idea that autistic women and girls push ourselves to blend in is not new – it’s been accepted wisdom for years now. One of the quotes in the Guardian article indicates this:
“Anyone who is alert to autism won’t be surprised by these findings,” said Hannah Hayward, a researcher on autism in women at King’s College London.
Yeah. It ain’t new. Also if you pick up on a UCL paper and wander off over the river to King’s(1) to get a quote about it from someone who wasn’t involved, you’re being a bit of a dick. Especially if the person at King’s is a PhD student rather than a professor. Just saying. Makes you a bit of a dick. If you quote that King’s PhD student at length and only then throw in a few words from the senior author on the research paper as an afterthought, then you’re compounding the dickness. Just so you know.
Go back to seven year old me and you’ll see someone who was terrified. I was copying other people left right and centre. Wiley little me was disguising my inability to fit in by fitting in! How devious.
Thing is, though… how often have you met a seven year old who was really, seriously good at anything by adult standards? How often have you met a seven year old who was such a good liar they fooled adults all the time? Sure, these kids exist. But lemme make this clear: autistic girls, for the most part, don’t fucking fit in. We don’t blend into the background. Sure, we try to. It doesn’t work. If every other kid in the class knew I was weird, I can tell you right now that an adult should have been able to tell, if they were looking for the right things. The problem here is that they weren’t and they aren’t. Why not?
When kids get referred to an educational psychologist in the first place, it’s often because they’re disruptive: they shout and hit things. That is much more likely to be something that an autistic boy does. Autistic girls often turn their frustrations inward and instead of yelling they carry a burden of anxiety that would crush a moose. I tend to experience shutdowns in times of extreme stress and sensory overload – panic followed by total failure of my brain to come up with anything useful. It’s easy to miss this completely. Sometimes you might see me sitting in a corner uncontrollably sobbing and hoping that nobody comes over to comfort me (it’s a nice gesture but it’s extremely stressful to deal with strangers, especially if they touch me). But am I having an autistic overload moment, or has my boyfriend just dumped me? As a stranger, you’re likely to assume the latter.
What else gets noticed? When a kid starts to fail at school: their grades plummet or never get out of the gutter in the first place. But if you’re a strong student; if, in fact, the schoolwork is the one part of school that’s a breeze, the adults in your life are satisfied by that barometer and don’t worry. At secondary school, the sense of being overwhelmed, the frustration at my failure to keep up with what the hell was going on in my social group, the terror that I was getting it all wrong, led to me faking all manner of illness. Between 12-16 I had an absence rate at school of around one day in three. That should have been a cause for concern, and I think that it did come up every now and then. But other than my not being there a third of the time, I was an excellent student. I came out with glowing exam results so everything was “fine.” This ties back, as ever, to the recurring theme that I keep shouting at everyone. The diagnostic world views autism not in the light of the autistic person’s experience, but in terms of how much of a pain in the arse they are for other people to deal with. So it begins here: an anxious, miserable girl who isn’t disruptive isn’t helped. Not because she doesn’t show any signs of autism – trust me, none of us can hide it that well. But because people don’t look.
The focus of the article is about GPs and their inability to understand the signs of autism in wiley girls with eye contact. Here are two issues, straight up, with that.
I know that medical professionals want to be able to tell the contents of someone’s head by looking at their face. It doesn’t work that way. You cannot tell if someone is depressed, anxious, or autistic by looking at them. There are sometimes visual indications that someone does fit one of these diagnoses, but you can’t rely on their appearance to say that they do not.
GPs are not qualified to diagnose autism: not in children, and definitely not in adults. Whether or not a GP thinks a kid looks autistic is irrelevant. A diagnosis requires an expert, and it takes a lot longer than ten minutes.
It comes up, regularly, that girls don’t fit the profile of the assessment. Well, no. That’s because it was designed by Simon Baron-Cohen, who was working on the basis that autism represents “the extreme male brain.” Once again, I cannot overstate the extent to which he can go and fuck himself for coming up with that one. He’s such a huge name in the field of autism research that the only people really challenging him are people on the spectrum. The research community, especially the ones researching autism, don’t. SBC has done an enormous amount of harm to autistic people and is not trusted within the neurodiverse community. I do not have an extreme male brain, or any kind of male brain. I am absolutely 100% a cisgender woman – completely sure about that. The extreme male brain hypothesis, however, has crept into the brains of those who follow science at a skimming level. It’s one of the best known ideas about autism. I am 100% certain that it is causing autistic girls who love ponies to go unnoticed because they aren’t boys who love trains and punch things.
There’s been a certain push in the last few years to see autism as having a male phenotype and a female phenotype. I’m not sure that that is the way forward, although I understand the rationale behind it. I don’t think we need two ideas about what autism is – I think we need one, more inclusive idea. I think researchers need to understand that original ideas about the core features of autism are wrong, because they have their root in gender essentialist, misogynistic and outdated ideas. Some of these ideas are just bizarre. “Autistic people aren’t interested in reading fiction.” Dude, have you ever met autistic people?
We shouldn’t be saying “autistic girls be like… but autistic boys be like…” like some terrible stand up comedian. For one thing, gender and sexuality really do appear to work differently in autistic people. And by that I mean we’re hella queer. Around 70% of autistic adults are gay, bisexual, pansexual or asexual. Autistic children are four times more likely to report gender dysphoria than neurotypical children, and many who don’t, don’t really feel a strong identity as cisgender.
So dividing us up along the gender binary as children and making sweeping generalisations about a gender that may not even be the correct one does not strike me as a good idea.
I don’t like to take any newspaper science at its word because it’s often bollocks, so I went looking for the original article. It was behind a paywall and neither SAGE not Athens would let me in, despite the fact that I’m certain my institution has the subscription.
Not fazed, my lovelies. Here’s a fun fact that I know because of my work, but you may not know. UK universities need to have open access to all research outputs for them to be REF-eligible. Lemme say that again in non HEI speak. What this means is that whenever a UK academic does a bit of research they’re proud of and writes a journal article about it, they have to give that article up for free to anyone who wants it. Otherwise it can’t go into the big WHO IS OVERLORD OF RESEARCH assessment exercise which gets their institution both kudos and money. So if you’re reading up on something and you get hit by a paywall for a journal article, do not fret. Look at who the principal investigator is. Check where they work – in this case a PI isn’t mentioned in the article, but we can see that Will Mandy works at UCL. Google “UCL research repository” and OH LOOK ALL THESE JOURNAL ARTICLES ARE AVAILABLE FOR FREE.
I started off thinking of all my possible responses to the journal article but there’s a lot of it and I didn’t want to get too bogged down. But here are a couple of things to note. First up:
It gets very frustrating when someone like Baron-Cohen insists that autism is “extreme male brain,” and gets that idea into popular science discourse, designs diagnostic tools that focus on a stereotypical autistic boy, and then says “but why aren’t girls getting diagnosed? Let’s look into it!”
Secondly the research was not aimed at figuring out if autistic girls camouflage. We’ve known that’s the case for many years. It was about working out if we camouflage more than neurotypical girls. Which, as it turns out, we do. Of course we do. Neurotypical girls aren’t having to force themselves to make eye contact. It’s a thing they do naturally. Neurotypical girls aren’t having to copy neuro- wait. Who are they supposed to copy anyway?
Here are some things teachers or family told me between the ages of 5 and 10:
Don’t chew your hair
Don’t tap your foot
Keep your hands still and stop fidgeting
Don’t drum your fingers
Look at me when I’m talking to you
Don’t walk on tiptoes
Don’t spin in circles
Don’t rock back and forth
Don’t yell at the whole class to shut up.
Can you see the theme here? They mostly meant well, but these behaviours weren’t harming anyone except for the hair chewing which really did leave my hair ragged. And was also pretty gross.
I maintain that the class really did need to shut up.
That failure to distinguish between “bad” behaviours and normal autistic behaviours was a source of stress throughout my childhood. I don’t blame anyone for it. The 1980s were a simpler time when it comes to autism awareness. But I know for a fact that teachers were more tolerant of boys “fidgeting” because that’s what boys do. All I got was a very steady message that there was something wrong with who I was and my natural behaviour – the very natural behaviour which made it more bearable to deal with the steady message that there was something wrong with who I was and my natural behaviour. Which, like I say, was already hitting me from every other direction because kids know who the weird kid is.
Combine this with the facts that:
I did not want to play with other children but preferred to wander round the playground examining the contents of my own head.
I absolutely could not cope with team sports, to the extent that I could make no sense of what was happening and would sometimes end up crying.
I was an extremely well-behaved child but I regularly got into trouble for being rude, especially when talking to adults. I was always genuinely confused about what I’d done wrong, and adults always assumed that I was lying when I said I didn’t know.
I had obsessive interests that I started talking about at every opportunity. EV. ER. Y.
And DAMN, GIRL! I SUCKED AT BEING NEUROTYPICAL. But I did okay at school, right? Top of the class. Remembered facts like a sponge. No, wait, I mean absorbed facts like a sponge. Sponges are not renowned for their memories, are they.
So all I had was debilitating anxiety that everyone else managed not to notice. I’m trying not to come across as wallowing in self pity here. I’m just stating the facts of the matter.
And then I read articles like the one in the Guardian. Girls use camouflage to appear neurotypical! No, girls are forced to pretend. “Using” camouflage suggests that we’ve made a decision. We face a pressure to fit in that no kid can wilfully resist. We’re kids. We need adults to approve of us, just as any child does. This pressure is harder on girls than it is on boys. Boys are allowed to have value when they fidget, when they get way too interested in something (as long as it’s space, dinosaurs or trains – something that fits in with stereotypes) and it gets laughed off when they speak bluntly. Because that’s what boys do, right? They’re just more “extremely male.”
Our culture, our medical system and our educational system are failing little girls (and other people who present as little girls, whatever their gender turns out to be). Not as badly as they failed us back when I was a little girl, but they’re failing us. That failure is on them, not on the “female autistic phenotype.” There’s nothing about being a girl or woman that makes us naturally inclined towards putting ourselves through pain and anxiety. We do it because the pain of being shunned, censured and rejected over and over is (just about) worse. Don’t blame the kids for this.
(1) I’m not saying that Kings and UCL are bitter rivals within the University of London, plotting their way to a bloody showdown. QMUL is probably not off on the sidelines shouting “leave it! It’s not worth it! Won’t somebody think of the undergraduates?” I’m just saying that UCL collaborated with Cambridge, Taiwan and Toronto on this project, but not Kings. Also that both of these research giants have their own teaching hospitals to deal with any casualties, and God only knows what secret project they’ve got in the basement.