“Good afternoon, [redacted because nope I am not telling you where I work], how can I help?”
“Yes, hello, I know how to cure autism and I think your organisation ought to know…”
Why must people ruin a perfectly good summer’s afternoon?
It’s always amusing to me that they never imagine they are actually talking to an autistic person. They never imagine, as they wax lyrical about being able to ‘fix’ this ‘imperfection’ and swoon over the ‘poor children’ they are trying to help, that there is a big opinionated grown up adult autistic woman absorbing every word with a professional grimace.
On the odd occasion, I have been tempted to tell them that I’m autistic. I’ve been tempted to stop them in their tracks and see just how well they continue their spiel on wanting to eradicate this admittedly infuriating but also wonderful part of me. But I never have. If it were someone on the train, or at a conference, or even in the middle of the street, you can bet I would be right there to challenge their misconceptions and force them to see a different side.
But I am at work. I am professional. I don’t believe there would be a problem if I did, politely, let them know that I am autistic and therefore rather offended by how they are referring to me. But, even when I get close to doing so, I realise that I don’t really want to. They have not earned that level of emotional energy from me, and I will not give any personal details about myself to callers in a work environment.
And I don’t think they would believe me anyway. Because I don’t fit their stereotype. At least, at work and in public I don’t fit their stereotype.
The very idea of a cure is something that cuts right down to my bones. Not just because I am proud and defiant in who I am, including in my autism, but because there was a very long period of time over which I would have crawled on my hands and knees to fix myself. Just this weekend, after a particularly awful day (the details of which I won’t go into), I clung to my mum and wailed that everything would be better if I could just be like everyone else. If, in a moment of devastation and desperation, I had been able to act on those feelings, then I know now that I wouldn’t be me. So many of my most amazing and precious traits are tied to my autism, and I would have lost out on so much richness if someone had handed me a pill to make me ‘normal’.
I’m not one to discuss the idea of ‘curing’ or ‘preventing’ autism. I’m sure it could be done. Science is amazing, and I understand precisely less than 0.01% of it. But that doesn’t matter. Because we shouldn’t be looking for a cure.
I don’t care if we can cure autism. Because we shouldn’t be trying to.
I know that, in many people’s eyes, I am deeply priviledged in how my autism has affected me. I can often ‘pass’ as having a normal life, with normal skills (whatever normal means). I did well in school. I can live semi-independently (although my university life taught me that I definitely cannot live completely alone and in control of my own life). I’m verbal. I don’t pretend to be able to speak for those people in my community whose support needs are so much higher than mine.
But, for me, any talk of a cure is terrifying. I can see the way down that road. And I don’t like anything that I see at the end of it.
Because it’s tempting. Because, in moments of despair, vulnerable people could be tempted to change something fundamental about themselves. Because people in my community who struggle to voice their own desires could be manipulated and treated against their will. Because it’s just a massive grey area of moral ‘nope’. Because I’m scared of what I would do in a weak moment. Because we don’t need it. Because there are so many other ways to help that don’t involve irreversibly altering our brain function.
When I think of the amount of money spent on researching these things, and I think about what could have been achieved if those billions had instead been redirected towards supporting us (and making small changes in the world for us – we’re a pretty significant demographic, after all), it makes me want to run out into the night and howl in the rain. When I think of how much better our lives could be if people focused on making the modern world more friendly for us, rather than fixing us to forcibly squash us into the modern world, I could weep for days.
I am not saying I’m perfect. I am the epitome of imperfect.
I am imperfect because I don’t always tell off my dogs when they jump up to greet me (because in that moment the amazingness of doggy affection trumps the knowledge that I’m teaching them bad habits).
I am imperfect because I swear like sailor, then realise small children are around, and then automatically swear again as I realise I fucked up.
I am imperfect because I have a 390g bar of chocolate sitting next to me as I write this and I have exactly zero intention of sharing it with anyone.
I am imperfect because I am a human being, not because I’m autistic. In fact, in the grand scheme of my ridiculous life, my autism is probably the least of the imperfections you have to worry about.
And so, what is the ultimate conclusion when it comes to ‘curing’ and ‘preventing’ autism and other such neurodivergence? Let me leave that answer to my mum (who often bears the brunt of my meltdowns and pointy end of my uncontrollable frustration), with her immaculate response when I tackled her off guard about whether she would change anything if she a) had a time machine and b) knew for sure that vaccinations caused my autism.
No. No. And hell no.