Trigger warnings on this post for ableism and suicide.
I’ve recently been drawn into a number of arguments about the idea of whether autistic people need to be cured or not.
Now, before I start writing about this, let me explain first of all that I am talking here about people being cured of their autism. Many autistic people have all sorts of comorbid illnesses and disabilities which impair their quality of life, and which could do with being cured. For myself, if I could get rid of the psoriasis, arthritis, anxiety, depression, asthma, migraines, hypertension, and multiple sleep issues I have, I would do so without a second thought. Those things all often go along with autism.
Many autistic people have comorbid learning disabilities (most — though not all — of the people whose parents refer to them as “severely autistic” or similar terms to try to devalue the opinions of supposedly “mildly autistic” people like me (my autism is anything but mild) fall into this category) or epilepsy. I’m not going to take a stand on whether those things should be cured, because that’s a matter for people who have those conditions.
But as far as autism itself… there’s something I’ve tried to explain many times to people who claim that it should be cured, something which most autistic people understand as soon as they realise what the label of “autistic” actually means. This is going to sound disgusting, but it’s literally true:
If you talk about wanting to “cure” an autistic person, what you are asking is for that person to be killed and for a stranger to walk around using their skin as a suit.
Now, this is not to deny that autism sometimes causes problems which I would wish not to have — or, rather, that living in an ableist society which assumes that everyone communicates using the same body language, that everyone has the same sleeping patterns, fine motor skills, level of executive function, tolerance for intrusive sounds and smells, and working memory, causes problems which I would wish not to have. But *every single aspect of my personality* is shaped, utterly and completely, by my autism.
Take my writing for example — people say I’m very good at explaining complex and confusing ideas in a way that gets across the ideas well. To the extent that that’s true, it’s because of two things. The first is that my brain is better at pattern-matching than most people’s. That’s an autistic trait. And the second is that my autism means that any time I want to communicate with anyone at all, I’m trying to talk with people who I can’t rely on to be sharing even my most basic assumptions, because their brains actually work differently, so I’m extremely practiced at breaking down what seem to me like simple concepts.
Or my interests. Autistic people have a tendency to have what get called “special interests” — an enthusiasm about some aspect of the world, or culture, or area of knowledge, that makes us examine every aspect of it, that makes us learn and retain every piece of information about that topic. Goodbye to my interests in DC Comics, or Grant Morrison, or Doctor Who or the Beach Boys or the Monkees, hello to being the kind of person who doesn’t even know the middle names of all the original Beach Boys members (Douglas, Edward, Carl, Dean, Charles, and Lee, in case you were wondering. And Bruce’s is Arthur) or the name of the theremin player on “Good Vibrations”. (Ha! It’s a trick question — it wasn’t a theremin, but an electrotheremin, and it was played by Paul Tanner, who was also the last surviving member of the Glenn Miller Orchestra, for whom he played trombone… you see what I mean?)
But even if I didn’t have a “special interest” in those things, surely I’d still like some of them? Plenty of neurotypicals like the Beach Boys or the Monkees, right? True, but they’re not listening to the music for the things I’m listening to, largely. Autistic people don’t have sensory filters the same way everyone else does, and I’m reliably informed that the closest thing to how I listen to music *normally* that a neurotypical person can experience is to take a small dose of mescaline or LSD — not enough to have a full-on hallucination, but just enough to break down those “doors of perception” that Huxley wrote about. My brain, and all autistic people’s brains, is constantly registering details neurotypicals don’t notice, and doing weird things with those perceptions. (A simple example — in my case, I can’t tune a guitar, even though I can play one, because my brain processes pitch and timbre in the same category). So no, my tastes would probably change so much that I wouldn’t love that music any more.
Speaking of love… autistic people make much stronger, much fiercer, attachments than neurotypical people tend to. We can love with a pure, laser-style focus. A cure might therefore mean I stopped loving my wife. That would be such an inconceivable change that I couldn’t even type that for a while, because the concept is so painful.
Or my dog — autistic people tend to find relating to animals much easier than to neurotypical people, because animals tend not to mask their feelings. Admittedly, this would give my Twitter followers some respite from my tweets about the latest cute thing my Jack Russell has done, but I’d rather keep that source of joy.
Or my politics. I might possibly remain a Lib Dem, but my political views are shaped by my autistic love for systems and understanding things in terms of systemic changes rather than individual events (thus for example my desires for constitutional reform and for economic changes that go further than the simple spot patches most mainstream social democrats support), and by my autistic hyperempathy (autistic people tend to have a strong sense of justice and a personal outrage at it).
How about my sense of humour? Well, when I go to see Stewart Lee or Richard Herring or Simon Munnery live, a lot of the audience seem to be men wearing T-shirts advertising IT companies or science fiction TV programmes, and many of them have rather stiff body language. I’m certainly not saying that all of them are autistic, but I wouldn’t be surprised if it was rather more prevalent in those audiences than in the general population.
(And that goes for everything here — I’m not saying that no neurotypical people can share any or all of these traits, I’m saying that when they do it’s not for the same reasons I do, because their brains literally work differently. I am not meaning for this to fall into the autistic supremacy trap that some fall into, and claim that neurotypicals aren’t capable of loving their spouses or pets or anything like that.)
There would, of course, be compensating positives — I’d be able to be on time for things, I’d be sociable rather than introverted, and I’d be able to eat a much wider range of foods and wear a wider range of clothing than I do now, thanks to the lack of sensory things.
But even there — those things would change who I am at least as much as any of the losses would. Ask anyone who knows me, even slightly, what they would think if I came into a room wearing a stylish suit, made casual small talk with people, and then ate a salad, and every last one of them would say that they would assume it was some sort of lookalike or Mirror Universe twin.
And this would be true for every autistic person — a “cure” would make them, literally, become a different person, in the same way that a version of me who didn’t like the Beach Boys or Doctor Who, didn’t love my wife, didn’t support the Lib Dems, ate salad, and didn’t write much would be a different person.
Now, some autistic people hate living in a neurotypical-centred world that they would like a cure anyway, and it’s even tempted me on occasion — but what that is, as many (though not all) would admit, is a desire for a version of suicide that wouldn’t upset their loved ones — because they’d be dead, and someone else would be walking around pretending to be them, but a version of them that their families and friends would find easier to get on with. Living in a neurotypical-centred world can be so painful for so many of us — and can induce such intense self-loathing — that it can seem like a good idea to just stop existing altogether.
But for anyone who actually cares about actual autistic people, just remember this — if you call for a cure for autism, you’re calling for a cure for *us*, and treating human beings like cancer cells. Instead of calling for a cure, maybe call for a world that doesn’t hurt us, instead.
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Thank you, Andrew, for a wonderful essay. You have said many of the things that I would say about Downs syndrome, for which my son is a fully paid up member. Yes I would like to cure his complications, but there are many aspects of persona that I would not change for anything. I am not trying to equate Autism and Downs, they are very different things, but like Autism, I would say that my increasing knowledge of Downs would suggest that we are all on those spectra. (Yes, yes, you either have trisomy of chromosome 21 if you are Downs or you do not, and Autism is far more complicated). But people are not defined by these narrow technical issues. they are first and foremost people. And there is no cure from being a person.
And as you say autism brings its own benefits, once the complications are got over. I never asked, but I am almost certain that one of the best statisticians who I ever worked with was probably highly autistic. But he was such a fantastic member of our institute that we never mentioned it. (though we were all amazed that someone could do everything that he did, and still cold not do things that we found easy….but when we were stuck, there would be that gentle kindly smile, and an almost instant solution. Why would anyone think of “curing” him or you?
I find the part about timbre fascinating – I always said in music class at school that I just couldn’t distinguish the difference in timbre, and now that might be autism linked? I wonder if it’s got anything to do with the sense of balance issues as well?
Obviously content warnings coming out of my ears, but someone on Dreamwidth linked to a site on the common behaviour patterns of abusive parents of adult offspring who refuse to admit that there was any reason why their offspring cut off contact with them, and it reminded me a lot of parents of autistic children who campaign for a “cure”. Especially the bit headed “parents’ rights” on this page.
I find it interesting the extent to which you identify your “self” with your personality. To my way of thinking, it wouldn’t kill me and replace me with someone else if I developed different interests, different tastes, a different sense of humour, different politics, if I didn’t love my wife… because all these things have already changed over time, and I’m still the same person! Perhaps you’ve changed less over your life, or perhaps you’ve just noticed the changes less, but this must have happened to you too, to a greater or lesser extent. For instance, there was presumably a time before you met your wife.
So to me, your argument that a “cure” for autism is “treating human beings like cancer cells” or “becom[ing] a different person” seems like a strange and unwarranted conclusion. That said, no-one should be forced to take a “cure” they don’t want, and presumably you don’t object to “cures” being developed for people who do want them, so I don’t think there’s any real policy disagreement. Or am I wrong?
More interesting is your personal horror at the thought of a “cure.” Taking your argument literally, your problem isn’t so much with autism “cures,” as with any kind of change to your sense of self, happening over any period of time. But perhaps I’m wrong to take it so literally, as a “cure” is presumably a discrete, sharp break. To make a sci-fi analogy, some find the gradual replacement of the atoms in their bodies unobjectionable, but worry that a matter transporter would cause their real self “to be killed and for a stranger to walk around using their skin as a suit.” Perhaps something similar is going on here, where slow, multi-causal personality change is non-threatening, but a single pill that changes your personality overnight is threatening?
No, you’re wrong on many counts.
First, my point isn’t the individual changes, it’s the way that those changes would be reflections of the way my underlying personality and thought patterns would change. When I say it would change everything about myself to the point that I would no longer be me, I mean it quite literally.
And secondly, I object in the strongest possible terms to a “cure” being developed, even if it is ostensibly for those who want it. Firstly, because money being spent on a “cure” for autism could and should be directed instead to interventions and therapies that would help *all* autistic people, rather than to fulfilling the desire for self-annihilation of a small minority (many of whom would not wish for death anyway were they in less pain from comorbid conditions and under less stress from an ableist society).
But even more importantly than that, because no matter what was said about no-one being forced to take a “cure” they don’t want, the invention of a “cure” would amount to nothing more or less than genocide. We live in a society that does not recognise that autistic adults even exist in any real sense, and which prioritises the desires of the neurotypical parents of autistic children over the actual needs of the children themselves. We live in a society where parents, rather than children, give consent to medical treatment for those children. Should a “cure” be invented, tens of millions of children would be subjected to it without any consent. And autistic adults would have what few accommodations are made for us taken away, because we’d just be “refusing treatment”. Indeed, given the way psychiatric patients and learning-disabled people are assumed to be incapable of informed consent to treatment, it would more than likely be forced even on those of us who have survived to adulthood and are capable of clearly and precisely stating why we do not believe such a treatment should exist.
(If you doubt that, reread your own comment, and the way you repeatedly try to tell me that I am wrong about my own experiences and views, and that my knowledge of my own personality is less relevant than your speculation. That is how neurotypical people *always* treat autistic people.)
And finally, even were all that not true, somehow (and I see no prospect of society *ever* being capable of reorganising itself into a non-ableist form while neurotypicals remain the majority), I would still object to the prospect of a “cure” being developed for the reasons I set out in the post above, which you apparently commented on without reading it.
Autism. Is. Who. I. Am. Treating. Autism. As. A. Disease. Is. Treating. Me. As. A. Disease.
I really can’t make this any clearer. Every single thing about the person I am, physically and mentally, is shaped by my autism. Literally every thing. When you talk about “curing” autism, you’re talking about curing my existence. You are literally treating my existence as being on a par with cancer or Alzheimer’s. Talking of a cure for autism is genocidal in exactly the same way as talking about wanting a cure for the existence of Jewish people or Muslims would be. Arguably more so.
Stop treating my existence as a disease, and stop telling me I’m wrong not to want to be killed.
Salem, there are serious problems with what you’re saying. This is such an unpackable comment! Yeesh, now it makes me wish I had posted my original flippancy that “Oh my God, Andrew, it’s like a really depressing Greg Egan story…!”
The first thing I see here is that you say Andrew’s “conclusion” is UNWARRANTED…but, look, that’s crazy: he doesn’t require a warrant to talk about his lived reality, not from you or me or anyone, and when he says autism isn’t a disease, a malady, that’s not him “drawing a conclusion” that’s him telling us how it is. I actually think your notions about the interrelationship of entities called “the Personality” and “the Self” is a little more obscure, FAR more the “unwarranted drawing of conclusions”, and I am not convinced by the restatement of the Transporter Problem, the restatement of the Transporter Problem is an analogy for your apparent worldview, NOT evidence for it, and…
Look, is it that you’re just trolling autistic people, here?! This irritates me. What is this garbage about how “we change all the time, sometimes I like strawberry ice cream, sometimes I don’t love my wife”, I mean what seriously IS that? “Maybe it is the rate of change that disturbs you”, okay, no, try this on instead:
You have headaches, so your doctor prescribes you a pill.
In the morning, you not only don’t love your wife, but also don’t recognize your own face in the mirror, and you discover that you have NO FEELINGS. Oh, and also you now mildly prefer Crest to Colgate.
As you’re standing on the ledge, preparing to jump, your loved ones say “but what about the Transporter Problem…!”
And you look back at them sadly, and say:
“The truth is, it’s not about how Capt. Kirk manages to stay ‘himself’ instant-to-instant, it’s really about how all that ever separated him from Dr. McCoy was just a layer of dermis, just some atoms and molecules…so when they’re in the Transporter beam together, why should the laws of physics ever choose to preserve two separate instantiations of ‘human being’ anyway? When by a normal replacement of bodily constituents McCoy might one day have spontaneously ‘become’ a Kirk-McCoy hybrid in any case, just by the laws of chance…”
And then you FUCKING JUMP. Sorry, sorry, I’m just angry, that’s all. In a way you’re saying all the right things, acknowledging all the right things, but you’re just not connecting with them. How much change does it take, for a human being to experience a profound discontinuity of identity? Greg Egan stories tend to say: “we don’t know; maybe not much.” If you woke up one day and didn’t love your wife, that would be sad, but you would still probably be capable of thinking “what happened, why don’t I love my wife anymore?” Why don’t I love my wife. Why don’t I love my wife. But if there wasn’t any “I”, there wouldn’t be any “why”,
And after you’d jumped, we’d ban the headache pill FOREVER.
But this is so crazy. Why do you think the word “cure” is being scare-quoted here? It’s because there can’t be a cure, if there isn’t a disease. So where do you get the “policy disagreement” stuff? Did I blink, and miss the point where we decided we were going to have debates about the implementation of things that aren’t even things?
You yourself put the word “cure” in quotes!
The thing is, we can easily change people’s lives quickly, profoundly, negatively, and permanently. This literally happens all the time. And SF has more images of “change” than just the Transporter, right? Sometimes inconvenient people get “mindwiped”. Sometimes their behaviour falls under the TOTAL CONTROL of another person, and they helplessly observe their own actions, silently screaming. Salem, I’m gonna need you to OPEN YOUR FUCKING MIND about this, all right? I’m a cis, straight, neurotypical white guy, so my biggest fear is “One Flew Over The Cuckoo’s Nest”.
Andrew’s is probably more like “Dollhouse”.
Please try to be a bit more sensitive!
I apologize to all for writing a long ranty comment. I am trying to learn more about autistic issues, for that matter about trans issues, bi issues, about ALL the issues, and as any newbie I am sometimes going to talk too much, and loudly too.
But everyone good is necessary. I feel like that is the very distillation of it, and if we could all just somehow get our heads around that fact then this would suddenly really BE the twenty-first century, you know?
No need *at all* to apologise. I agree with every word.
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I am not autistic (so far as I know…) but I completely get your point. I *have* wished to become another person, and also felt suicidal (over the same things). I have changed drastically in my recent life in ways that mean I no longer feel like “me” any more. I woulld not wish that on ANYONE.
So, even those who wished such a cure might regret it afterwards. Food for thought.
As an aside, you have inspired me anew to finish my book about how I cured my psoriasis. Just needs editing. I was not aware that P was associated with autism, though! Fascinating.
Yeah, autism seems to be associated with inflammation and autoimmune disorders, so a LOT of autistic people tend to have psoriasis, and even those who don’t tend to have it in their families. It’s one of the big things that cluster with it, like epilepsy, asthma, depression, and (weirdly) being trans.
Glad your psoriasis is better (my own is under control with steroid creams, and a million times better than it was a few years ago, but I still get fairly bad itches from it).
My sister has non-classical congenital adrenal hyperplasia, which causes hormonal disturbances, and if I recall correctly both P and this are on the same (or neighbouring) chromosomes. Suggestive (if my recall is correct!).
Me and sis are both highly numerate/logical (me computers, her stats) my dad and his brother were engineers, and me and dad default to taking things very literally… I (and others) have long suspected that I, at least, am an edge case…
Me and dad (at least) also have ankylosing spondylitis (super mild). Dad has digestive issue and his brother had P…
I’ll make sure you get a copy of my book when I finish it!