There hasn’t been much suffering yet in your week of autism blogs Kate. I mean, people will say you’re suffering from autism, that you’ve got a disease (aarrgh, neither thing is true, though yes, both have been said to me), but you haven’t really conveyed that yet. Why not? Are you one of those celebratory types who only has good things to say? I expect it’s because yours is just so very mild, it’s barely there. Think of a non verbal boy who has to be restrained, who has meltdowns, is incontinent, bites people. He must have what, 1000 kilojoules of autism in his blood, whereas you probably have about 100 (this is also not a thing, nope. There is no autism in anyone’s blood)*. Anyway, show us your pain, otherwise how will we know you’ve even got any autism at all?
In a way this is what a diagnostic interview requires. It’s also what most media and cultural accounts of autism require. It’s also, I would suggest, overdone. Also possibly damaging to my career and self-image. On the other hand, I do want to be truthful. Let’s see if I can oblige:
My Worst Day As An Autistic Person. 1.
Do I mean from my own point of view? In some ways it was when I had to get up and do a talk at an autism professionals conference after a psychiatrist who had just said that “autistic people are a genetic mess” and I realised that my hard won right to be listened to had been considerably eroded by a diagnosis I had voluntarily acquired. Or the day when I was on a project with some autism Mums who were clearly quite annoyed that myself and my (at that moment also articulate) autistic colleagues thought we were in any way “like their children”**, didn’t believe we should be asking for things like fluorescent lights to be dimmed, and then had the school’s headteacher tell me to my face that she wouldn’t employ autistic teachers because they’d get too anxious.
But, if we’re just talking general, day to day living then it might be a day when I’ve failed to recognise several people and made them think I don’t care who they are, had to sit in a very noisy, fluorescently lit place for ages and got a loud buzzing in my head, been talked to or at for ages in a way that didn’t have compensatory enjoyment and meant I got a very tired brain, then needed something simple to make me feel better like a meal or a lie down or to write an email, but not been able to stir myself to do it. That doesn’t sound too bad does it? We all have days like that…
My Worst Day as An Autistic Person. 2.
I’ll have another crack at answering that by looking further into the past. Perhaps it was one of the days when I was 16 and left home with a 46 year old man who was abusive on a number of levels- and then when I came back, I couldn’t live with my (dysfunctional and abusive) family anymore and did my A-levels while on income support in a bedsit, had bulimia and no sense whatsoever of how to keep a home or access or accept emotional support. Yes, surely that’s more like it. Misery memoir stuff. There is increasing research about the degree to which young autistic women in particular suffer higher levels of sexual abuse and grooming, due to their difficulty in reading people and situations and their isolation.
On the other hand, I now tend to think that being autistic shielded me from some of the worst of what the situation could have led to (In that I preferred being on my own in quiet places and was fairly unconscious at the time of most negative feelings I might have been experiencing including sadness or anxiety). Also, as one of twins born to a working class single mother, some of what we experienced will have had intersecting and complex social and historical causes. (Complicatedly I think she herself was autistic and in turn groomed and abused by an older, bullying husband, but as you can’t diagnose the dead, this’ll have to stand as speculation).
My Worst Day as An Autistic Person. 3.
Given that so much of what’s difficult about autism is actually not fitting in to the expectations and norms of others, it’s perfectly possibly that my worst day as an autistic person was actually one that I thought was brilliant. Maybe I’d enjoyed hyper focusing on a book for a few hours and been happily spotting patterns about something I was particularly interested in at the time. Perhaps I’d have written a poem I was particularly pleased with. Been in a “flow” state while talking to someone about one of my interests and experienced time passing enormously quickly. Been made a lovely, nutritionally balanced tea by someone who wasn’t me.
However, unbeknownst to me, maybe someone was making a decision about my future. Shall we pick Kate for that job she’d be really good at? Ah, no, not Kate. Her hair is weird, her clothing calls attention to itself. Also, she’s likeable but a bit odd. She doesn’t come out for drinks with everybody. There’s an indefinable otherness about her. She’s not like the other people we usually put in these positions. Remember that meeting where she said exactly what she thought and what everybody else was thinking but that nobody is ever supposed to say? Also how she remembers your dog’s name but not your child’s? No, she should go off and be a poet instead where criteria like what we’re applying now will (rarely) matter…
*Autism is NOT like paralysis. There’s not actually something ranging from the equivalent of mild paralysis where your toes are a bit stiff, to severe paralysis where most of your body can’t move. The coiners of the word “spectrum” would not use that word today (they recognise that “But we’re ALL on the spectrum is erroneous and unhelpful)- they’re now looking more at recognising “dimensions” in which your different areas of your being are affected in different ways in different situations.
Partly this comes back to – autism is not a “thing”- it’s not a disease, and you can’t peer at it under a microscope. It’s not like somebody like me who presents shows on the radio only has 100 kilojoules of autism in their blood whereas a boy who can’t currently speak, has regular meltdowns and bites people is like that because they have 1000 kilojoules in their blood.
Neither of us have any kilojoules of autism in our blood. Quite a lot of the way we have developed, and the orientation our brains and bodies have to the world is similar- but I have much lower support needs and I do not have other co-occurring conditions which impede my ability to acquire something that looks like “normal” social functioning.
**The fact that I have acquired the ability to “pass” as not-autistic and to not need support in many situations is not necessarily a better predictor of a better outcome for my life on certain measures. In fact, my “mild” autism means I’m nine times more likely to commit suicide than average and 80% more likely to be bullied. Both measures higher than for our boy in the above footnote.
On the other hand, I’m more likely to present a radio show, get married and complete a PhD, as I have. Not necessarily relevant to our actual happiness and fulfilment levels, but certainly in terms of a capitalist system that values what you are able to earn and the fact that you might be less likely to call on other people’s time to help you achieve any happiness and fulfilment you do find, then I am apparently more useful to society- I disagree with this by the by. However, it’s alright for me to say that. I’m not the one constantly having to prove my worth under this system (or have it proved by my carers).