Against Against Autism Cures
[Content warning: autism, disability, psychiatry, abuse]
I.
Vox: We’ve called autism a disease for decades. We were wrong.
I have mixed feelings about this. On the one hand, I know and like many people in the autism rights movement. They defend autistic people’s right to avoid psychiatric care if they don’t want it, and this fits well with my own position that (outside of emergency situations) everyone should get to choose whether or not they want psychiatric care. They also do good work exposing abuse of autistic people and ideas that promote such abuse, and calling out organizations that claim to speak for autistic people but don’t do a very good job. And they provide great resources that help autistic people and their friends and families. Ninety-nine percent of what they do is unquestionably great.
Yet somehow, whenever I hear about them in the media, the article is titled either “Autism Is Not A Disease” or “Stop Trying To Cure Autism”. I don’t know if it’s just the usual controversy-mongering or whether this really is at the center of their philosophy, but they manage to consistently emphasize the one percent of their philosophy I can’t be on board with.
All psychiatric categories are a mishmash of unlike things crammed together under a single name. Depression ranges from people who put on a normal facade but feel empty inside, all the way to people who are totally catatonic and can’t move or speak. Schizophrenia ranges from people who are totally okay as long as they take their medication, all the way to people who talk in “word salad” because their thoughts are so malformed that they can’t even make complete sentences. But even among diagnoses like these, autism takes the cake in terms of heterogeneity.
I kind of a have a front-row seat here. On the one hand, about half my friends, my girlfriend, and my ex-girlfriend all identify as autistic. For that matter, people keep trying to tell me I’m autistic. When people say “autistic” in cases like this, they mean “introverted, likes math and trains, some unusual sensory sensitivities, and makes cute hand movements when they get excited.”
On the other hand, I work as a psychiatrist and some of my patients are autistic. Many of these patients are nonverbal. Many of them are violent. Many of them scream all the time. Some of them seem to live their entire lives as one big effort to kill or maim themselves which is constantly being thwarted by their caretakers and doctors. I particularly remember one patient who was so desperate to scratch her own face – not in a ‘scratch an itch’ way, but in a ‘I hate myself and want to die’ way – that she had to be kept constantly restrained, and each attempt to take her out of restraints for something as basic as going to the bathroom ended with her attacking the nurse involved. This was one of the worse patients, but by no means unique. A year or so ago, after a particularly bad week when two different nurses had to go to the emergency room, the charge nurse told me in no uncertain terms that the nursing staff was burned out and I was banned from accepting any more autistic patients. This is a nurse who treats homicidal psychopaths and severely psychotic people every day with a smile on her face. When she says “autistic”, it seems worlds apart from the “autistic” that means “good at math and makes cute hand flap motions”. When a mental health professional says “autistic”, the image that comes to mind is someone restrained in a hospital bed, screaming.
The Vox article doesn’t deny any of this. Matthews admits that “people have a image of autistic people as these completely nonverbal children banging their heads against the wall” and his interviewee Silberman describes how autistic children in institutions, when left alone, would “end up chewing through their own finger”, which pretty much 100% matches my expectations of what my autistic patients would do if the nurses weren’t there to watch them.
But as per Matthews and Silberman, this is just a consequence of the maltreatment these children receive in institutions:
What society thought of as the natural course of autism was actually a very skewed view of what happened to autistic people when they were put in institutions. For decades, the recommended course of treatment for autism was institutionalization.
Parents were routinely told they should put their child in an institution, quietly remove their photographs from the family albums, never speak of them again, and enlist in decades-long courses of psychoanalysis to think about why they were motivated to wound the developing psyches of their children.
When children were put in institutions for the rest of their lives, it wasn’t like they were put in specialized autism wards. There was no such thing, with very few exceptions. They were mostly put on psych wards for adult psychotics. Oliver Sacks worked on such a ward, Ward 23 at Bronx psychiatric, in the 1960s. He told me that some of the children and young adults would be put in straight jackets and isolation rooms to sit in their own waste for weeks on end. The children and young adults became self-injurious, which is not a surprise at all. If you treat people brutally, they’ll react in extreme fashion.
Be sure to read the rest of the article for more horror stories about the ways autistic children were treated; this sort of stuff was all too common, slightly-toned-down versions of it are still too common today, and this is why I agree with ninety-nine percent of everything the autism movement says.
But then they start talking about how we don’t need a cure.
II.
The popular literature about autism tends to fall into the genre of “Doctors hate her! Area mom cured her child’s autism with This One Weird Trick!” Common One-Weird-Tricks include gluten-free diets, casein-free diets, massive multivitamin doses, and whatever else the cutting edge of quackery can dream up. The autism rights people are rightly suspicious of this entire category.
But I worry they have their own One-Weird-Trick: treating autistic people decently.
You should treat autistic people decently because it’s the right thing to do. But it is not One-Weird-Trick. Avoiding abusive treatment will prevent things from being worse than they have to be, but that’s all. It will not turn severely disabled people into independent, happy-go-lucky angels. Parents, caretakers, and doctors can do everything right, move heaven and earth to accommodate an autistic person’s every need and limitation – and they will still suffer.
Some of this is purely biological. Thirty percent of autistic people have comorbid epilepsy, often very severe. Over half of autistics are cognitively disabled. Autistics have three times the risk of Tourette’s Syndrome, five times the risk of cerebral palsy, about a hundred times the risk of tuberous sclerosis, and various balance and coordination disorders, plus an increased rate of other psychiatric disorders like bipolar and schizophrenia. There are treatments for these conditions, both pharmacological and otherwise, but they come with their own set of side-effects and difficulties and none of them are 100% effective.
And some is behavioral – but as far as I can tell in no way limited to maltreated or institutionalized autistic people. Half of autistic children self-injure, and more than half of autistic children and adolescents are physically aggressive. Autistic children are twenty-eight times more likely to be suicidal than other children. Three-quarters have eating problems ranging from “picky eater” to “will not eat food, good luck doing something about this”. About two-thirds have “sleep disorders”, which is sometimes a euphemism for “wakes up screaming in the middle of the night and will not stop”. As best I can tell, all these studies were done on non-institutionalized autistic people who were generally well-treated and still living with their parents.
And yes, institutionalization adds a whole lot of extra suffering to the mix. But even here, I find Matthews’ narrative overly simplistic. He talks of a world where random doctors swoop in and trick parents into sending their children to institutions out of pure prejudice and stigma. Anyone who’s ever worked with these families has seen something very different. These parents aren’t poor deluded rubes who have been tricked by stigmatizing doctors. They’re well-educated, deeply committed to their children – and desperate. They’ve spent years trying to raise kids who were violent, self-injurious, locked in a sensory hell without the ability to explain their problems verbally, and maybe having seizures all the time to boot. Their decision to institutionalize is a reluctant concession to this reality. I do not feel the slightest bit of qualification to pass judgment upon these parents and I invite anybody who does to spend a few moments talking to them. Unless you can give these parents a better option – and trust me, they’ve looked – institutionalization isn’t a moralistic tale of prejudice and stigma in the medical system. It’s just a few more drops of misery added to the vast morass of suffering that is severe autism.
Matthews and Silberman speak dismissively of Leo Kanner’s view that autism was caused by bad parenting, but I worry we’re headed right back in that direction. Start telling people that the only reason autistic people have all these problems is because of institutional abuse, and someone’s going to ask “But what about all these autistic people living with their parents who also head-bang/attack people/try to kill themselves?” Then you can either admit that sometimes autism just sucks no matter how good an environment you’re in, or blame the parents for not making the environment good enough. And once you’ve made “autism isn’t a disease and nobody needs a cure!” into your rallying cry, it’s going to be hard to choose that first option.
III.
If we can’t make all autistic people independent and well-adjusted with One Weird Trick, then we have to consider how real autistic people actually turn out. The numbers aren’t good.
Outcomes In Adults With Autism Spectrum Disorders: A Historical Perspective reviews all of the autism outcome studies of the past fifty-odd years. Most of it is nitpicking different people’s definition of “poor” outcome versus “very poor” outcome, but let me try to extract the easily quantifiable bits1.
Six studies have assessed what percent of adult autistics have a job – they find 22%, 21%, 31%, 4%, 4%, and 4%. The two that found rates in the twenties limited themselves to high-IQ autistics and so are unrepresentative.
Four studies assessed institutionalization rates among adult autistics, although these “institutions” form a very heterogenous category from homey group houses to super-intense locked hospitals. These studies find 35%, 43%, 48%, and 53% of adult autistics to be institutionalized.
A few studies looked at other outcomes. Two investigated what percent of adult autistics still lived with their parents. Both estimated about 50%. This is in addition to the 40% or so who are institutionalized, so only about 10% of adult autistics live independently.
One study investigated how many autistics have at least one friend and found it was just under 50%.
I cannot find any studies on adults with autism per se, but adults with Asperger’s (recently collapsed into the autism diagnosis) are ten times more likely to be suicidal than other adults.
I realize this seems extreme2, but I think it really puts into perspective the difference between the conventional “shy person who likes trains” view of autism, and what psychiatrists and scientists really mean when they talk about an autism diagnosis. The happy, independent autistic people whom most of us know and whose stories get told in the media are four to ten percent of the autistic population. What about the other extreme, the forty percent who are institutionalized?
I hate to have to criticize institutions – an umbrella term I’m using to cover group homes, locked facilities, nursing homes, hospitals, etc. Many are run by amazing and caring people who are doing thankless work on shoestring budgets. I’m humbled by the patience and compassion I’ve seen in their staff of nurses, techs, and other caretakers, and I can’t judge them nor claim that I could do their job for one minute.
That having been said, a lot of institutions are kind of hellish.
I’ve seen institutionalized patients who were sexually abused, physically abused, or just neglected and left to wander out into the street. Lest you dismiss this as crazy people making things up, some of the allegations later got confirmed by police investigations.
Other times it doesn’t rise to the level of anything criminal, just the usual petty tyranny you expect any time somebody gets to control somebody else’s life. I got consulted for “medical management” of an autistic man who had smashed a bunch of holes into the wall of his group home. He needed his mp3 player to control his noise sensitivities, but the staff had taken it away as punishment for breaking some rule or other. He decided a proportionate response was to smash several holes in the wall. To his credit, it worked; my diagnosis was “give him back his fricking mp3 player, you morons”.
But even when the institutions are well-run, non-abusive, and dare-I-say-it-even-nice, the whole structure just makes a perfectly bad fit with autistic people. Remember, autistics are known for intense sensory sensitivities and pickiness about their environment. Take someone who can remain stable as long as there are no unexpected loud noises, and make him share a room with a guy who screams at the top of his lungs every couple of minutes for no reason. Or take someone who will eat about 1% of foods, and only if they’re perfectly prepared, and then stick him in a hospital where the catering service lets him choose from a menu of two meals, and they’re always out of one of them. Or take somebody who freaks out about the feeling of different textiles, and tell her she has to sleep in a mass-produced hospital bed with exactly the same sheets as every other mass-produced hospital bed.
I have some very minor sensory sensitivities, and they drive me nuts. But at least they only metaphorically drive me nuts, That’s because I’m an independent middle-class person who can throw money at problems to make them go away. I have no tolerance for stray noise, so I pay a little more than I should for housing and live in a quiet area outside town. I can’t stand constricting or scratchy clothing, so I only wear loose-fitting clothes, extend the collars
The hospital I work in really does try hard to make things more tolerable for our autistic patients. It’s never enough. Fix all of the contingent things, and you just bump up against the fact that humans were not designed to live in psychiatric hospitals, autistic humans least of all.
I have met many well-intentioned people who believe that institutions are only bad because of stigma against the mentally ill, or insufficient budgeting, or ignorance of people’s true needs. These people should visit a nursing home someday. The people there don’t have some kind of exotic stigmatized hard-to-understand condition. They’re just old. Yet nursing homes and other institutions for the elderly have every bit as many problems as the institutions for autistic people.
I don’t think that mental health institutions will get better anytime soon, because I would expect the average person to be a lot more concerned with nursing homes – where their grandparents live! Where they themselves will end up one day! – than they are with mental health institutions. If we can’t even get our act together on that one, what hope do we have for the harder problem? Having good involuntary communal living institutions is just plain beyond us as a civilization at this point. It has nothing to do with stigma or prejudice. Even if everybody loved autistic people exactly as much as they love their own grandmother, the best we could hope for is institutions that treat autistic people as well as they treat grandmothers. Which is to say, abysmally.
V.
Dylan Matthews says that autism “is not a disease”, joining writers from TIME, The Guardian, The Irish Examiner, various blogs, et cetera. I would hate to contradict such an array of eminent voices.
So let’s taboo whether something is a “disease” or not. Let’s talk about suffering.
Autistic people suffer. They suffer because of their sensory sensitivities. They suffer because of self-injury. They suffer because they’re in institutions that restrain them or abuse them or just don’t let them have mp3 players. Even if none of those things happened at all, they would still suffer because of epilepsy and cerebral palsy and tuberous sclerosis. A worryingly high percent of the autistic people I encounter tend to be screaming, beating their heads against things, attacking nurses, or chewing off their own body parts. Once you’re trying to chew off your own body parts, I feel like the question “But is it really a disease or not?” sort of loses its oomph.
My moral philosophy doesn’t contain a term for “is this a disease or not?”, but it definitely contains a term for suffering. If you’re a good person, you try to alleviate or prevent suffering. Accommodating and supporting autistic people alleviates some amount of the suffering associated with autism. Curing it alleviates all of that suffering.
And remember – society is fixed but biology is mutable. Which do you think is more likely? That soon biologists will discover a molecular cure for autism? Or that soon politicians will discover a cure for the systemic issues that cause poor people who can’t stand up for themselves to be maltreated and abused? The biologists seem to have about a ten million times better track record for this sort of thing. And if you don’t expect the politicians to create a brave new world where no disability ever remains unaccommodated, then stopping the biologists just means that the status quo will go on forever.
Faced with the choice of seeing the flood of human misery that I have to deal with every day continue mostly unabated, or having a pill that provides a quick fix to said flood, I wish with all my heart for the latter. Sure, this should not be pursued at the cost of supplying what accomodations to existing autistic people we can, any more than blue sky cure-for-cancer research should be pursued at the cost of treating current cancer patients, but it’s right and proper to want it, to think it would immensely improve thousands of people’s lives.
Would something be lost if autism were banished from the world? Probably. Autistic people have a unique way of looking at things that lets them solve problems differently from everyone else, and we all benefit from that insight. On the other hand, everyone always gives the same example of this: Temple Grandin. Temple Grandin is pretty great. But I am not sure that her existence alone justifies all of the institutionalizations and seizures and head-banging and everything else.
Imagine if a demon offered civilization the following deal: “One in every hundred of your children will be born different. They will feel ordinary sensations as exquisite tortures. Many will never learn to speak; most will never work or have friends or live independently. More than half will consider suicide. Forty percent will be institutionalized, then ceaselessly tyrannized and abused until they die. In exchange, your slaughterhouses will be significantly more efficient.”
I feel like Screwtape would facepalm, then force him into remedial Not-Sounding-Like-An-Obvious-Demon classes.
VI.
My medical ethics have always said that outside emergencies, people who want psychiatric help should be able to get it, and people who don’t want psychiatric help should be able to refuse it.
So when autistic people say they don’t want cures forced on them, I say – fine. If you’re happy with your autism, and it’s not hurting anyone else, keep it.
But when they say we should stop all research into cures so that nobody else can have one either even if they want it, that’s a different story. When they say that, well, then I’m not the one dictating to other people what neurotypes they are or aren’t allowed to have.
When I see an autistic guy in a hospital room screaming and trying to chew their fingers off, I feel like that guy would probably want a cure for autism. Granted, that guy can’t always talk and tell me what he does or doesn’t want. But he certainly doesn’t seem happy with the status quo. And some autistic people, even some very high-functioning autistic people, have told me straight out that they want to be cured. Who the heck are we to tell them their desires are wrong?
More controversially, I think caretakers who wish there was an autism cure that could relieve them from the responsibility of caretaking have a valid wish. Nobody is entitled to another person’s life. A schizophrenic man has the right to stay off antipsychotics, but his wife has the right to make an ultimatum: “I can’t deal with you being schizophrenic, either you take your meds or I’m leaving.” Likewise, an autistic person has the right to stay autistic, but a caretaker has the right to say “This caretaking is too much for me, either take the cure or find somebody else.”3
Even more controversially, I think parents have the right to decide if they want to have an autistic child or not. I am generally pro-choice. As best I can tell fetuses have less personhood than cows, and I had a cheeseburger for dinner last night. If someone wants to abort a fetus because their pregnancy was an accident, because they don’t feel ready to have a child, because there’s some kind of problem in the family – all of those seem to me like a decision that a mother is perfectly within her rights to make, because fetuses are not very important moral agents. And if instead of just “I don’t want a child”, an expecting mother is worried because she doesn’t think she will have the resources or compassion or strength of will to take care of an autistic child, that is also her decision to make. Also, I feel like if your whole argument is that autism only goes badly when autistic children are mistreated, maybe you shouldn’t be simultaneously demanding that women who really don’t want autistic children and don’t believe they can take care of them should be forced to have them anyway. On the other hand, if a mother wanted an autistic child, and she was somehow sure that she could support that child and help him or her flourish, I would be okay with her aborting however many neurotypical fetuses it took.
But even more controversially, absent such certainty that your child will flourish I think if some kind of genetic-engineering autism-cure existed, parents would have a moral obligation to use it. Consider an analogy to fetal alcohol syndrome. People with fetal alcohol syndrome seem less happy, less able to achieve their goals, and more likely to suffer than people without the condition. Therefore, we have a very strong social norm that you shouldn’t drink too much during pregnancy. But people with autism also seem less happy, less able to achieve their goals, and more likely to suffer – in fact, autism shares a lot of symptoms with fetal alcohol syndrome, like seizures and intellectual disability. The moral imperative to take the hypothetical-genetic-autism-cure during pregnancy seems as clear as the moral imperative not to drink alcohol, and for the same reason4.
I don’t mean to propose a zero-sum game here. All sorts of breakthroughs and possibilities could give both sides everything they want. Maybe there is some way to alleviate some of the more distressing symptoms of autism while leaving the deeper and more cognitive parts intact. I don’t think anyone wants, as a terminal value, for people to be intellectually disabled or have more seizures. If Dylan Matthews were to list all of the things he likes about autism, and I were to list all of the things I don’t like, maybe there wouldn’t be anything on both lists. And maybe the bad things are controlled by separate genes from the good things, so that we could turn off one set of genes and not the other.
And I’m still in favor of basic income. If everyone gets a basic income, autistic people who want to spend it on getting the care and support they need to remain autistic could do so without costs to anybody else. I do hope that there will be only a very short stretch of time between the development of technology that can genetically engineer people at will, and solving the scarcity problems that make our desires sometimes demand sacrifices of others.
And maybe the best option is that somebody develops technology that can change your brain type during adulthood, so that everyone has the option of experiencing life as an autistic person and as a neurotypical person and seeing which is best for them. Invent something like that and the problem disappears.
And a lot depends on the genetic structure of autism. If autism is just the brain’s response to high mutational load, then trying to do most other good things will prevent autism as a side effect. On the other hand, if autism is the extreme version of a trait whose common version is “good at logical and scientific thinking”, then we have to ask ourselves whether that trait is worth messing with. As usual, everything about genetic engineering raises thorny scientific and ethical quandaries, and I can only hope we don’t drag our feet in creating the eight-foot-tall IQ 300 supermen who can solve them.
And maybe all of this is silly, because we don’t have an autism cure and we’re not even very close to one, and maybe when people talk about whether we should use the autism cure we don’t have, it’s all a metaphor for “respect my tribe” and “I demand my rights” and “here’s a good controversial lead-in to a story about how you should treat autistic people like human beings” and maybe even if I’m right about the literal moral dilemma I should support the opposite side for totally symbolic reasons.
But if, after all this, it really does comes down to a binary “cure autism/don’t cure autism” decision, I know which side I’m on.
Footnotes
1. In a way, all of these numbers are meaningless. If you define “autism” so broadly that it includes Dylan Matthews and me, maybe less than one percent of autistics are in institutions. If you define “autism” so strictly that you only count institutionalized autistics, then one hundred percent of them are. So really what these studies are saying is “We chose to define autism at a level where forty percent of autistics are in institutions”, to which one response is “And why should I care what level you chose to define autism at?” But I think these studies at least tell us two things. First, that the formal psychiatric definition of autism is much stricter than the popular one, and we combine the two categories at our peril. And second, that this former category of very severely ill autistics exists and contains many people we might not otherwise notice.
2. The employment and living-with-parent numbers don’t seem to have changed much over time; the institutionalization number has decreased over the past few decades. This probably reflects a general trend toward deinstitutionalization throughout the mental health world. So far there is little sign of autistic people doing great now that the most abusive 60s-style institutions have been curtailed. But perhaps this just hasn’t shown up yet; these are studies of adult autistics; even the youngest were born in the 1980s, and the autism world has changed a lot since then. I’d say that I will be interested to see a similar study in 2030, but I think by that time the diagnostic category will have become so confusing that nothing will be comparable to anything that came before it.
3. Even more controversially, I think the government has the right to do the same. The lifetime cost of supporting an autistic person is $1.5 million, not including productivity loss of the person themselves. Much of this is borne by the government. The average taxpayer will give about $500,000 over their lives, so it takes three non-autistic people to support each autistic person – even ignoring all other essential government services like schooling and welfare and giant nuclear missiles. Of course, helping the needy is exactly the sort of thing the government should be doing, and right now the government ought to do whatever it takes. But if there is a cure for autism and autistic people choose not to take it but still want the $1.5 million, then the government has the right to start thinking things like “we could lift a whole lot of destitute families out of poverty for $1.5 million.” Everyone has the right to choose their neurotype, but I’m not sure they have the right to make other people subsidize it.
4. Prof. Mora LeQuivalence: “Interesting point! Let me propose a similar argument that you might have a more personal stake in. Why don’t we genetically engineer away nerdiness? Everyone knows nerds are less happy than normals, at least in high school.”
Scott: “The cost-benefit calculations are totally different. Nerds are probably unhappy, but less so than autistics. And while autistics can claim Temple Grandin, nerds can claim pretty much every decent scientist and mathematician of the past few centuries, plus all the good sci-fi/fantasy writers.”
Mora: “Fine then. Keep the nerds around until they build robots that can do math and science and art. Then we won’t need them anymore and we can get rid of them.”
Scott: “Look, we can’t do all of this based on broad principles. There’s a balance between having a wide variety of human experiences versus having some of them be hellish. Few people want all individuality collapsed into a planet-sized chunk of hedonium, and few people think that a couple of expecting mothers should drink lots of booze to protect the vital diverse human experience of fetal alcohol syndrome. You’ve got to make your own choice about where to draw the line, and I draw it somewhere south of nerds and north of severe autism.”
Mora: “That’s a very interesting argument.”
Scott: “It better be, I stole it directly from God.”