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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 accomodate 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 instutitionalized.

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 Aspergers (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, and cut off all the tags. It works pretty well – but only because I have a lot of control over my life. Put me in an institution where other people manage everything about my daily routine, and my life would fall apart. And my sensitivities are a fraction of a fraction of what real autistic people suffer.

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 contigent 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. Accomodating 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 unaccomodated, 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 avalid 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, becauses 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 acheive 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 severly 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.”

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862 Responses to Against Against Autism Cures

  1. Aspie-Autistic 1957 says:

    I am pro choice and it would be great if the people who want a cure get it and those that don’t want it don’t get it. I just do not think it will work out that way in reality. People if not forced will be strongly coerced either by legal means or more likely financial incentives/penalties. It could take the form of higher insurance rates for those do not take the cure or companies not hiring those that refuse to take it etc.

    As for Bill Gates I am in no position to diagnose him and if he is Autistic and just does not want to disclose that is his right. But the the idea he can’t be be autistic because Microsoft has been marketed well is wrong. What most forget or do not know is Microsoft is a team. Steve Balmar was the man behind marketing Gates ideas. They were successful because as a team their strengths complemented each other.

  2. jane says:

    Thanks for writing this. This is a sensitive topic and I commend your bravery for taking it on with your usual level of rigor and care.

  3. Claudia Mazzucco says:

    Dear Scott Alexander, How was autism mingled with Asperger Syndrome? Clearly Asperger’s stands apart from autism in general. When the Syndrome was “invented” by the APA in 1994, the parents of so many brilliant middle-class Asperger boys grow abusive at the very mention of the word “autistic.” For them, Asperger’s was an assert, not what the Greeks called a fate. I will regard Asperger’s as a culturally constructed disorder (like ADD), not the biological deficit so many advocates of Neuro Diversity like to claim.

  4. Aspie-Autistic1957 says:

    I was diagnosed with moderate-severe Aspergers and ASD at age 55 in 2013. I view my executive funtioning difficulties as an impairment I would serouisly think about a taking a cure for. The rest of it especially the social part I view as a disadvantage of bieng a minority.

    The unchanged employment statistics you raised I have experience with. In my 20’s and 30’s I had a good career and got along well with my collegues. Then my career slowly deteriored into bieng unemployed the last 10 years. What changed since the 1980’s when I started my career? Economy is much worse, much more emphasis on soft skills, open offices/group work due to workplace shootings, 9/11 fear of difference, culture of suing people. When I started programmers, accountants were expected to be odd introverts. Now there are multiple interviews and batteries of personality tests. These developments have not been not been good for autistics employment prospects.

    You would think with all the awareness it would be betters for today’s autistic children and in some ways it is. Today you have 25-40 hours a week of ABA as the gold standard. ABA has evolved from torture to positive reinforcement. However forcing a kid autistic or not to do anything that long hinders growth. This is part of the bigger problem of helicopter parents managing and following thier kid (even in college) around via texting 24/7. Sensory overload that hinders growth and produces kids unable to think for themselves. In the 1960’s and 1970’s bullying in an era when bullying was boys bieng boys, a rite of passage was really bad. But once I was out of school that was it. Weekends and evenings were free. I rode for miles on my bike or spent time in my room door closed perusing my interests. People did not panic when a kid missed a marker, it was viewed as a phase we would grow out of and a lot of times we did. There is a 1979 paper floating around on the Internet saying that it is normal for first graders to be able to walk 4 blocks by themselves. Today a parent that allowed that would be viewed as a free range freak and reported to authorities for child abuse. That is a lot of the reasons for the “miracle autism recovery” stories you read about.

    In a perfect world a future Autism cure world would truly be a free choice. I greatly fear and do not expect it to work out that way. Via legal or more likely finiancial inducement/penalty I expect it to be forced on people. Want a job, want insurence you must take the cure. I can see not wanting to take it bieng seen as a symptom of mental illness. How can you not give your kid the cure to this horrific disease?

    interest

  5. Chris says:

    I don’t know if you can see this comment down here but be sure to check out this guy, who has even been featured in Newsweek: https://en.wikipedia.org/wiki/Jonathan_Mitchell

    He is possibly the only pro-cure autistic with his own personal website/blog. He had trouble making a stable living, which is most likely his main reason.

  6. publius says:

    So, here is how I read this. Maybe — hopefully — it’s not how you meant it to be read, but it’s how I read it.

    Firstly, you want people like me not to exist. You believe that my quality of life is insufficient, & my cost to society is too high, & you say that this gives the government a right to ensure that people like me don’t exist. Fine. Where does this process stop?
    Being a Black American comes with significant detriments to quality of life, & significant social costs. Black Americans are imprisoned at higher rates, & have lower average incomes, than White Americans. Your logic would appear to equally justify a government mandate that pregnancies in which the foetus is genetically unlikely to “pass the paper bag test” should be terminated by abortion.
    Now, I hope you don’t agree with that. I hope you regard it as a gross distortion of your position, never mind that your argument is in so many words the one used to justify* the extermination of the European Jews. But what I want to point out is that, once you begin defining some degree of difference as unacceptable, as a disease state to be cured or prevented, there is never a fixed point at which you can say “stop! all differences within this boundary are forever sacrosanct”. Slippery-slope argument? You’re damn’ right. That’s what the Overton Window does.

    Secondly, to get further into the meat of things, which is where my Catholic education comes in handy :
    I am bound to reject, on principle, the idea that all people should have the same way of experiencing & interacting with the world. Quite aside from arguments based on the spectrum of human experience, “neurodiversity” has the same Benthamite value as any other form of diversity, viz, it provides an alternative approach which may succeed where the normative approach fails. As a race, humanity can scarcely afford to be locked into a Darwinian box by eliminating diversity which does not appear to be adaptive under present conditions. In the past century, our society has grown less accommodating of such diversity : today, for instance, regardless of one’s skills or qualifications, it is very difficult to obtain a job without sending the appropriate social/emotional cues to the person making the hiring decision, who is generally not the person one will be working under. This is an invisible barrier to workforce participation at least by the high-functioning autistic person.
    Now, I am fully prepared to concede that, quite aside from measures to palliate or even cure comorbidities, it would be desirable if some kind of therapy could be provided to assist those autistic people who are actually having difficulty with basic life functions, in a way which cannot be reasonably accommodated — the kind of autistic person you as a medical professional see disproportionately. In fact, however, I have seen nothing to indicate that there is any such therapy which is not as bogus & damaging as “homosexual conversion therapy”. It provides financial benefits for the quacks who practice it, it provides emotional benefits for the parents who cannot live with the fact that their children don’t conform to their preconceived expectations, but it provides no benefit to the patient, & in fact does considerable harm, up to & including death.

    TL;DR
    Untangling “autism the disease state” from “autism one extreme of the normal range of human variation” is a very tricky problem, and without doing that, the idea of a “cure” is nearly meaningless, & almost certainly counterproductive.
    Meanwhile, in the real world, “autism cures” kill children. Even “conventional”, “accepted” psychiatric therapies (remember that leucotomy, a “treatment” hardly distinguishable from murder, was once this) sometimes do that, & very often leave the patient in a worse condition than he was in to begin with.

    *To be carefully distinguished from the rationale behind doing it.

  7. A says:

    I can only hope we don’t drag our feet in creating the eight-foot-tall IQ 300 supermen who can solve them

    …who can solve them, but who might decide to kill us instead.

  8. onyomi says:

    To play devil’s advocate: if we invented a cure for homosexuality (or, indeed, for heterosexuality) today, would that be a bad thing? I’ve known at least one gay friend who confided he would be straight if he could just flip a switch and do it–and this person had no religious upbringing nor suffered particularly from any discrimination–he just thought it would be much easier to be the “default” sexuality for which society and family structure are set up–sort of like being right handed.

    And conceivably some people who are straight might like to be gay, as some people who were born female feel they should be female, and vice-versa.

    Not saying it should be a top research priority, but it seems like ability to choose one’s sexual orientation would not be a bad thing, to say nothing of ability to choose one’s autism status.

    • James Picone says:

      Neil Gaiman’s “Changes” for sexuality? Sure, why not.

    • brad says:

      Maybe I’m unusual but I don’t really get the preference for “there continue to be people like me” expressed by a bunch of people above. If in 200 years everyone is gay I don’t see why that should bother me (assuming I die in < 100 years, if we get near immortality that's a different story).

      I can see the parent of a child with down syndrome not wanting to see her child be the last as that would mean fewer resources devoted to people with down syndrome but a) that argument is pretty hard to translate into one that would work behind the vale of ignorance and b) it doesn't seem to be the one people are primarily making.

      • Linch says:

        Agreed. I don’t see any inherent value in future people being Asian, or gamers, or tall.

        I do see value in future people being reasonably intelligent, happy, funny, altruistic, etc….but I like to imagine that those are generally positive traits rather than ones I happen to contingently like because I have them more than most people.

  9. seebs says:

    The biggest concern I’d have, I mean apart from the thing where you’re advocating the elimination of all people like me from our society, and that ultimately sounds to me like genocide, is that I am pretty sure that humanity without autism would be a much less viable species.

    Yes, autistics do really badly in a society where active hostility to them and habitual discrimination are accepted without much concern. But you know what? When women weren’t allowed to go to college, they had much worse educational attainment than men did. That doesn’t mean women are inherently less capable; it means that a consistent pattern of discrimination hurts people.

    I’m autistic. So are many of my friends. Some are not very functional in our society, but most of the time, it is really easy to see how a society could, at very very low cost, accommodate them. Or could have accommodated them earlier and resulted in less trauma.

    The statistics you’re using are seriously flawed, because by definition they look only at the cases where (1) someone is expensive to support and (2) they are diagnosed as autistic. But if you’re not expensive to support, why would anyone diagnose you? They mostly wouldn’t. It’s not at all obvious that what you’re looking at is “autism” rather than “severe cognitive disabilities which happen to have occurred in autistic people”.

    A thing you might find interesting to read:

    http://lysikan.tumblr.com/post/106147681470/you-dont-speak-for-low-functioning-autistics

    I also note, I don’t think it’s so much that the formal definition is more restrictive, as that a lot of psychologists are still working from definitions 20-30 years out of date. I know multiple obviously-autistic people who have been told they can’t be diagnosed as autistic because they are adults, or they have friends, or they can make jokes. That just argues that the data are not gonna support the conclusion…

    But lemme get back to that viability thing. Autistics are a societal immune system. Take away the autistics, and virtually no one is left who can say “hang on, I know this feels really good, but does it make any sense?” If you think mob mentality is bad now, imagine what it would be like without the people who are, because of their “lack” of social processing, willing to stand up in front of a bunch of people and say “no, that doesn’t make sense”. It would be a lot worse, I suspect. I’ve seen so many waves of outrage or hatred on tumblr run until they hit some autistic bloggers who said “hang on, these claims are nonsensical”, and gave everyone else some innoculation against the madness.

    I suspect that having people like that around is very, very, useful for society.

  10. Cyril says:

    I’m an autistic person, and your thinking scares me. The people who you see as most in need of a cure — people who scream or hurt themselves or react violently to caretakers — they’re *already* having their wishes overrode by caretakers and family members. Like, you *already* hear reports of families forcing treatments and therapies on autistic people, sometimes from childhood onwards. “Treatments” like, y’know, bleach enemas or electroshock therapy. And you point to people in those situations, who are the most likely to be abused because they depend on caretakers, and say “hey, you know, I think I know what’s best for those people.”. I mean, that’s what I’m getting from this article. I agree that if an autistic person *wants* to somehow get rid of the less-pleasant things that come with having an autistic brain, they have every right to do that. But I just see this hypothetical cure being forced on people whether or not they actually want it.

    • Earthly Knight says:

      The people who you see as most in need of a cure — people who scream or hurt themselves or react violently to caretakers — they’re *already* having their wishes overrode by caretakers and family members.

      Could you be more precise about which of the following three claims you are making?

      A. ALL autistic people who self-harm, assault others, or never stop screaming are being abused or mistreated by their caretakers.
      B. MOST autistic people who self-harm, assault others, or never stop screaming are being abused or mistreated by their caretakers.
      C. SOME autistic people who self-harm, assault others, or never stop screaming are being abused or mistreated by their caretakers.

      I’m also not sure exactly how you think this is relevant, other than to as a way to enlist people’s sympathies for the poorly-delineated “let them be” side. Would the fact that 60% of nonverbal autistic people are abused, if it were a fact, be a good reason not to develop a cure? I’d be more inclined to say that, if autism condemns its victims to a lifetime of abuse even from the people most disposed to care for them, finding a cure becomes all the more urgent.

      • HeelBearCub says:

        @Earthly Knight:

        It seems to me that the point is more along the lines of “the cures are currently worse than the “disease” so lets try to make things actually better rather than focusing on this BS cure stuff”.

        I’m not saying the point is correct (although, I don’t we are anywhere close to a cure, so I think there is almost surely a valid point in there somewhere), but I think that is closer to the claim being made.

      • seebs says:

        I think the key point would be “there is a lot of evidence that these behaviors often result from abuse, or from attempted “cures”, where such attempted cures are mostly abusive”. In short, we don’t need a cure for “autism” to make these people happier and more able to contribute to society, just a cure for the way in which they’ve been mistreated.

        • Earthly Knight says:

          In short, we don’t need a cure for “autism” to make these people happier and more able to contribute to society, just a cure for the way in which they’ve been mistreated.

          Yeah, this is where the all/most/some distinction becomes very important. I agree, certainly, that many autistic people are victimized, either through misguided attempts at treatment, thinly-veiled attempts at enforcing conformity in the guise of treatment, by caregivers at the end of their ropes, or by plain, old-fashioned sadism. But I suspect that the number of autistic people who are aggressive or self-mutilating but would not have been if not for a history of abuse is a small fraction of the total. Autism can be a debilitating condition even for individuals who are raised with the utmost care and respect, and it’s those people who most need and would most benefit from a cure.

  11. Cabe says:

    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.

    I figure there’s oodles of not new-insight but *marginal* benefit available where you set autistics to performing those tasks that are doable though extremely boring for normal people, but which cannot be fully automated (yet). I have personal experience with Unicus, a consulting company which does exactly this on a small scale. They hire autists and then rent them out for what would normally be the utterly soul-crushing dregs of IT, where you have to read through five hundred pages of customer service logs and look for the three anomalous entries that don’t conform to a set of bone-dry technical specifications, and the autists appear to be a great fit for doing this on hours on end without complaint and retaining attentive throughout.

  12. Anonymous says:

    I scanned the comments and didn’t see this question asked: why do you extend your collars, instead of just buying wider ones in the first place? Is the availability different somehow in America, or is there a qualitative difference in feel between an extended collar and one that fits to your liking to start with?

    (I ask because I have this same discomfort with tight collars albeit AFAIK not because of autism spectrum stuff, and when I buy shirts I just tell the sales guy that I prioritize comfort and there’s never been an issue.)

    • Nornagest says:

      In the United States, off-the-rack dress shirts have two size parameters: sleeve length and collar circumference. Sleeve length controls the overall length of the shirt, not just in the sleeves but also in the body. Collar circumference controls the overall width, not just of the collar but also of the chest, waist, sleeves, etc.

      This works pretty well as long as you have the body proportions that the fashion houses expect (which usually means “keg-shaped”, as most buyers are middle-aged American men, but varies brand to brand; some brands have “slim” or “tailored fit” shirts, which means “only a little keg-shaped”). But if you have unusual proportions, or are muscular, or sensitive to tight collars, then you’ve got a choice between shelling out for bespoke or made-to-measure clothing (which is expensive) or resigning yourself to your shirts fitting like a tent.

  13. Christi Heyduck says:

    I agree with much of this article, though not all. My daughter is 28 and is autistic and has cognitive disabilities. She would like a cure for autism. As a parent/caregiver, I can tell you that my life is not easy at all. I also would like a cure for autism. I suffer as I watch my daughter.

  14. Urstoff says:

    I clearly don’t understand what the debate is going on in the comments thread. It seems very clear that, ceteris paribus, a cure for very low-functioning and/or self-injurious autism would be a good thing. People aren’t debating that, right? It’s more the question of at what point are we no longer significantly improving the quality of life of a person and instead are simply modifying people to make them “fit in” better? Because of course there is going to be some grey area there, and self-determination seems like the reasonable rule. Am I missing something, or is everyone just arguing about that vast grey area and we all agree on the extreme cases?

    • Sylocat says:

      The internet does not handle “gray areas” well.

    • HlynkaCG says:

      A cure for low-functioning and/or self-injurious autism would likely work on higher functioning autism as well. This poses a serious existential threat to certain tribal groups, thus the controversy.

  15. PGD says:

    Real autism is crippling and a profound mental disorder. Most of ‘autism spectrum disorder’ is just the medicalization of normal personality variation. ‘Autism spectrum disorder’ has swallowed up actual autism. Most people who call themselves autistic these days are just adopting a fashionable label.

    Presumably this was said, probably better, above but I don’t have time to go through 700+ comments.

    • Peter says:

      Yeah, yeah, we’ve heard it all before.

      There’s a thread starting here that made a pretty similar point, which Ozy and I picked holes in.

      Try wading through those 700+ comments, you might learn something.

    • US says:

      Do you have a source for that? And how do you reconcile that view with the outcome stats included in Scott’s post – like the observations that only 10% of people with ASD manage to live independently, that in most samples less than one in five are employed and that less than half of them have any friends at all? Are you saying they’re wrong, or that it’s not a big deal to be unable to live independently*, have no friends and be unable to hold down a job? (And unable to find a partner, ever, to add to the data from the post: this comment also includes e.g. the observation that between 70 and 90 % of adults with ASD in recent studies had no experience in romantic relationships, and this is not just because they don’t want them (“as a whole, studies repeatedly show that although individuals with ASD desire intimate relationships, few actually have them”)).

      Maybe you’re right that ‘Most people who call themselves autistic these days are just adopting a fashionable label’, but it would be nice with a source/citation or an explanation of how you get from the numbers discussed here to an impression like that. The most reasonable way to get there would be to claim that most of the people who call themselves autistic these days do not have an autism spectrum disorder, but that does not seem to be what you’re arguing. But then what are you arguing? If you look at people with autism spectrum disorder, they generally do really poorly. Are all the studies on people with autism spectrum disorders wrong somehow? How are they wrong? A lot of them have distinguished between low-functioning individuals and high-functioning individuals, and a lot of studies have looked at people with Asperger’s. The numbers look bad regardless of which group you’re looking at – I mean, this is a context where if you get numbers where more than 20% have a job you start talking about selection bias because they’re doing too well..

      I’m not quite sure I understand your position.

      * For some definition of ‘live independently’: It’s a bit more complicated than Scott made it out in his post: “Even when adults with autism live outside the family, their families especially their mothers have extensive contact and involvement in their care. Kraus et al. (2005) reported that 50% of families visited their adult with autism at least weekly and an equal number of adults came weekly to visit at their mother’s home. […] This need for continued parental support crosses the entire spectrum of individuals with autism.” (Adolescents and Adults with Autism Spectrum Disorders, by Volkmar et al.)

      • Peter says:

        Another source: here, restricted to the “higher functioning” end of the spectrum – “All of our individuals correspond to “level 1” of autism spectrum disorders of DSM-5”. The outcomes are varied and lots of the research subjects seem to have some of the parts of a “normal”[1] life but there’s a notable difference with the general population.

        I suppose a large part of the problem is where you put the magic threshold for “normal” in the first place.

      • NN says:

        It seems to me that all of those studies have the potential problem in that their subjects are probably mostly drawn from clinics, support groups, etc. and thus they could have a selection bias towards people who do poorly and thus seek help from clinics, support groups, etc. In fact, it seems likely to me that the entire population of “people with an ASD who are officially diagnosed with an ASD” has a similar selection bias, because people with more severe problems are more likely to end up seeing a psychiatrist who would be qualified to diagnose them.

        The fact that autism rates have increased so much in recent times from what seems to mostly be a broadening of diagnosis rather than an actual increase in incidence only emphasizes this fact, and suggests that this bias would get stronger the further back you look. I’d be willing to bet that if I had been born 10-15 years earlier, I would only be considered “weird.”

        • Peter says:

          Ideally you’d do research on big samples of the general population – if you had a sample of 10,000 people and gave each of them a proper diagnostic interview, then you’d have really good stats. Good luck getting that funded though.

          One odd thing; it’s possible that selection bias makes things look less bad for one outcome – failure to pair up. Apparently two of the three major causes of adults going for ASD diagnosis are marital/relationship difficulties, and having a child diagnosed with ASD (the third one is having a mental illness like depression or GAD, the selection biases here should be obvious).

        • US says:

          I’m not sure how to interpret the combination of views you express. You argue diagnostic creep explains increasing incidence (‘people without major problems are (more) likely (than they used to be) to get a diagnosis’). But on the other hand you argue that “people with more severe problems are more likely to end up seeing a psychiatrist who would be qualified to diagnose them” (‘so only particularly bad cases get diagnosed’). Which one is it?

          In terms of this one:

          “it seems likely to me that the entire population of “people with an ASD who are officially diagnosed with an ASD” has a similar selection bias, because people with more severe problems are more likely to end up seeing a psychiatrist who would be qualified to diagnose them.”

          …I also must admit that I don’t really follow at all. Distinguishing between people with severe problems and people without severe problems is *the entire point* of the diagnostic framework applied – you want to figure out who have significant problems, so that you can help them, and who does not. It’s even right there in the diagnostic criteria, one of the formal diagnostic requirements is that: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.” Diagnostic criteria have changed over time, but that one was always there. That people with problems get a diagnosis and people without problems don’t isn’t selection bias, that’s how things are supposed to work – if your brain is wired a bit like the brains of autistics but this does not cause significant issues, you’re not supposed to get a diagnosis. And if the outcome studies are not systematically biased, that is still to a significant extent how it actually is, though of course relatively recent changes to diagnostic procedures may admittedly not yet be reflected in the outcome studies.

          I’m aware of the discussion about diagnostic creep and I’ve pointed out the downsides of more ‘inclusive’ criteria before in discussions about related topics, but I think if one is to argue that all the outcome studies are wrong you in my opinion need a bit more than just ‘it seems likely that they only research the ones with major problems’, or something along those lines. Poor outcomes, using multiple different metrics, have been a very stable finding in this area for decades, across many countries with quite different systems of psychiatric health care provision.

          The amount of diagnostic creep presumably varies across countries; my impression is that autism diagnoses are significantly more common in the US than in Europe, but I haven’t looked at the literature. If you can convince me e.g. that outcomes in outcome studies do not vary with incidence/prevalence the way they arguably ought to (‘higher incidence should indicate more marginal cases included, and so better outcomes in general – if higher incidence does not lead to better outcomes, then maybe there’s a problem with selection bias in outcome studies’), then that’s one indication that there’s a problem. The time dimension could probably be included as well (have outcomes improved over time, as incidence has increased, or have outcomes not changed as one might have expected them to do?) to evaluate this. But you sort of need a bit more than just a claim that all the studies are wrong ‘because of selection bias’.

    • PGD says:

      The nature and meaning of ‘autism’ has changed so fast that I don’t think that studies of current adults are identifying the same ‘autism’ as the meaning in the popular culture today. Also, as NN says above, the recruitment for these studies is going to be people with an interface with the clinical treatment world, vs the kind of people who self-diagnose with autism on the internet. So I’m not sure this is going to be settled with the famed ‘peer reviewed study’.

      Apologies for the somewhat blunt and overstated fashion in which I made my claim above, but let me say more clearly what leads me to it. I had a lot of close day to day contact with autistic kids back in the 1970s, due to some close family friends with autistic children who were fighting for treatment and care and therefore were pretty networked in the autism community then. What I saw in those kids was just completely and utterly different from what I see described as ‘autism’ today. They were not Temple Grandin; they were teenagers who were almost totally non-verbal, self-harming, sometimes attacking others, trapped in really compulsive repetitive physical behaviors, etc. And they had loving or at least caring parents (parenting is so challenging under such circumstances), it wasn’t an issue of abuse. The ‘high functioning’ ones were the ones who could maybe have a very simple repetitive job under heavy supervision and live in a group home. I just don’t understand how you put those kids in the same diagnostic bin as someone who is shy and fiddly, has trouble making eye contact, and maybe sometimes says some inappropriate things in conversation, when you have no clearly understood physical brain disorder that you are tracking. It just seems crazy to me; these seem like totally disparate phenomena.

      And the diagnostic situation with young kids seems to be getting even more promiscuous; my kids are in elementary school and I see a huge range of stuff getting tagged as autistic. Are you *too* friendly and approach strangers to chat? Autistic! Do you like to play alone more than other kids? Autistic! Etc.

      [On rereading the post — I think I’m really agreeing with the post, and saying that the ‘autism is curable’ stuff comes from overdiagnosis of autism today. The kids I saw in the 70s sound just like the adults that Scott is talking about in the post]

      • PGD says:

        As a PS, check out the DSM-5 criteria for autism spectrum disorder:

        https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

        If you think of social and communication skills as advanced and complex learned skills, how are these not simply being on the low proficiency end of a complex skill set which naturally ranges across a wide variance in human beings? To take an analogy from the world of physical skills, it’s like we’ve lost the distinction between being physically crippled and being clumsy and uncoordinated.

        • US says:

          “the kind of people who self-diagnose with autism on the internet.”

          Those people are not autistics. You’re autistic if you have a formal diagnosis made by competent professionals. I’m familiar with the diagnostic criteria.

          “I don’t think that studies of current adults are identifying the same ‘autism’ as the meaning in the popular culture today.”

          That may be true. I don’t care about popular culture and I did not think this was what we were discussing. I don’t really care what views ignorant people hold in the context of these topics, I care about the evidence, the data, the studies.

          If recent outcome studies (recent compared to ‘the 1970s’) show that those people whom you claim should probably not have received a diagnosis because they don’t belong with the Real Autistics also have shitty outcomes, then perhaps it’s not overdiagnosis as much as it is an increased appreciation that some of those people who used to be considered ‘slightly odd’ perhaps have/had bigger difficulties than used to be thought. And in that case the diagnostic criteria may still be sufficiently useful to distinguish between shy nerds and people with bigger problems than that. This may be changing these years (in the US especially), but so far you or NN have provided no concrete evidence to that effect.

          You should know that I while interacting with you am deliberately suppressing an impulse to feel personally attacked by your comments, on account of having a ‘mild’ form of autism spectrum disorder (diagnosed through multiple cognitive evaluation sessions, performed by autism experts/researchers, spanning several days, ADOS, ADI-R, etc.) which might not have been diagnosed in the 70s. I’m familiar with my own problems. In a very similar world in which very few things had been different, I would have died from suicide and we would not be having this conversation. I could say a lot more about the kinds of issues I’ve had over the years and how I score on the various outcome variables included in Scott’s post, but personal information like that is not something I’m willing to share in a place like this. There are enough problems to cause me to get sort of touchy when you argue that people currently on the mild end of the spectrum should not be receiving a diagnosis, because I start thinking about whether the change you’re suggesting would exclude me – especially as it seems likely that it would. Yeah, there’s a line somewhere and in the US you’ve probably gone too far (I have argued along the same lines myself before – incidentally I live in Europe), but I don’t think we agree on where the line should be.

  16. Jaskologist says:

    In graduate school, there was a fellow student who dropped out during the first year and cited the psychopathology and diagnosis class as why. When he learned how the DSM criteria sets are derived– and what they mean– he determined that mental health professionals had replaced clergy in the new social order. We had simply replaced the word “sin” with “inappropriate” and given the mental health professionals the authority to summarily imprison those outside the norm ( at least for a few days). I have this authority now.

    The social, occupational and leisure domains are, of course really only affected as a function of societal norms. THIS is what my counterpart in graduate school—the guy who dropped out—was concerned about. When he learned that the DSM diagnostic criteria sets were not statistically, rationally and scientifically derived ONLY, but that another dimension—politics/culture are included in the calculus for defining a disorder, he became distraught and quit.

  17. Bismarx says:

    You raise a good point, but I can’t help but feel that your argument would be much more effective if it were shorter and more focused. You argue that we shouldn’t stop searching for a cure for autism, because autistic people are often much more severely disabled than most people realise and it would be a good thing if we found a way to alleviate those people’s suffering. You underpin this with statistics and with harrowing anecdotes that probably give a lot of readers (me, for one) a new perspective on the issue. Straightforward, engaging, effective.

    But then you go on to talk about abortion and genetic engineering and basic income – controversial topics that are only tangentially related to the subject at hand. This doesn’t only make the article longer than it needs to be, it also massively distracts from your main point – and it gives readers who are inclined to disagree with you an opportunity to go “A-ha! He’s one of those filthy basic-income believers! See, I knew this whole article was bullshit” and close their minds to your argument.

    If I were you, I’d cut out the last section wholesale. In many of your posts you’ve shown such a clear understanding of how the human mind works, especially in the context of online debates; I think it would help if you applied some of that understanding in order to get your own messages across better.

    • Edward Scizorhands says:

      He’s not trying to change the world. (Or maybe he is, I don’t really know him.) I think he was wrong on those points but I understand enough not to derail.

  18. onyomi says:

    Since we have a number of people on here self-identifying as autistic, autism-spectrum, and/or possessing of autistic tendencies, I’m curious:

    For those who self-injure: subjectively, what is the cause? Is it like “I want to bang my head on a wall because I’m so frustrated with myself?” “I want to cut myself because I hate myself and deserve pain?” “I want to scratch my face because it feels like ants are crawling on it”?

    For those who experience sensitivity to noise and other stimuli: is it like “this noise seems literally louder to me than it seems to seem to others,” or is it “this loud noise just really bugs me in a way it seems not to bother others”?

    For those who crave sameness and routine: is it like, “I feel secure eating these three foods I know really well; trying to eat new food makes me anxious”? Or is it like, “literally everything but these three foods tastes disgusting to me”?

    • Anonymous says:

      > Is it like “I want to bang my head on a wall because I’m so frustrated with myself?”

      Sort of. I get a strong urge to hurt myself in some way when I’m really frustrated or mentally overwhelmed, but it’s not a system 2 thing. Not giving into the urge is like not pulling my hand out from under an uncomfortably hot faucet. I can usually resist if I try really hard, but my automatic reaction (i.e. before conscious thought kicks in) is to do it.

      (I don’t know if this is how other people on the autism spectrum experience self-harm, though.)

    • These are outside observations from watching kids with food aversions, but to me, they basically seem like the normal food aversions kids have, except dialed up to 11. Ironically, this makes it hard to explain, because almost all kids go through a picky eating phase.

      Neophobia seems like a natural response to food, a perfectly reasonable one to keep you from getting poisoned. For example, once I had pickled fish. Even though the fish actually tasted fine (vaguely like ketchup,) it just kept triggering this “You are eating something weird!” sensor in my brain and I could only bring myself to eat a couple of pieces. Given enough repetition, you get used to the food and it becomes normal.

      In the kids I’ve observed, it’s like the voice is yelling “THIS IS SOMETHING WEIRD!” at top volume and the kid absolutely will not touch the food. You can promise them ice cream and cookies and a new toy, and they’ll break down crying because they cannot bring themselves to try that new food. And I’m not talking “pickled fish” here, I’m talking french fries or chicken nuggets.

      One kid I’ve observed also seems to gag on mushy foods; this kid will not eat *cake* because it is mushy, cannot have milk on their cereal because it makes them gag; etc. I don’t know if this is physical or psychological. They also have a strong aversion to certain smells / flavors, which may result in vomiting.

      Not all of the kids I’ve observed are autistic; possibly none of them. But they definitely have food issues.

    • Sylocat says:

      Can’t help you on the first question. For the second and third questions, speaking only for myself, it’s mainly the latter and the former, respectively.

      There are a few exceptions (mint, any kind of mint, tastes so unbelievably terrible to me that it is literally, physically painful to my tongue, to the point where I seriously cannot understand how anyone could like the flavor), but I think those might be more down to personal taste. Which is the eternal confounder for all of these, sadly.

    • Jaskologist says:

      I am not autistic, but I do seem to be more sensitive to stimuli, especially noise. After much observation of my wife, I think that it really is a case of me noticing/hearing more things*. I seem to notice low-level sounds more, and I definitely pick out scents that she doesn’t. I like to believe that this is proof that I possess mutant senses. I’m sure the other mutant powers will manifest any day now.

      A little while back I wore earplugs for a few days, and felt such a sense of peace it was like I’d been born again again. But then after a few days the sound of my own blood pumping was getting on my nerves and I felt a similarly relaxed when I removed them. I don’t know what the moral is there.

      * This realization was a boon to our relationship. Maybe she isn’t out to get me after all. Maybe she just doesn’t see that little piece of trash on the floor every single time she walks by it.

    • onyomi says:

      It’s interesting how a lot of the features of autism seem to share an overactive self-protection response: being careful about eating new foods is good and adaptive, but not if you can hardly eat anything; being suspicious of unfamiliar people touching you is good and adaptive, but not if all physical contact is horrifying; and, of course, not immediately empathizing 100% with everybody else is probably good and adaptive, but being unable to even comprehend what is going on in others’ heads is not: hence the “focused-on-self” etymology, I suppose.

      I’m not sure why this would make you love trains or self injure, but I guess that the association of autism with being really good at a small number of things may just be a result of: when the brain rejects almost everything else, it can focus more energy on the things it does like?

  19. jeff01 says:

    Is it really fair to assume these people don’t have a natural preference for eating their own fingers?

  20. Steve Sailer says:

    Over my lifetime, the word autism has expanded hugely to cover ever more people. Perhaps we need new words to help us carve nature a little more precisely at the joints?

    • Douglas Knight says:

      If people wanted to carve nature at the joints, they’d have the words already. Clinicians want precision and they do have more words. Asperger’s was introduced for exactly that reason. As a result, full-fledged autism without retardation has not expanded to cover any more people.

      But most people don’t want precision. If you want precision, you can use clinical terms, but you can’t expect other people to use them.

      • Nornagest says:

        I was under the impression that Asperger syndrome was rolled into the autism category recently for clinical use, which puts us in an unusual position where the colloquial language is more precise (if not necessarily more accurate).

        • Peter says:

          Of course this doesn’t stop researchers talking about Asperger’s Syndrome. Partly, lots of their potential research subjects have AS diagnoses from before the switchover, and partly because AS is no longer a current clinical term, doesn’t mean it can’t still be a scientific term.

    • Earthly Knight says:

      I should think the main problem is that we don’t know where the joints in nature are, not that we lack for verbiage to attach to them– just witness the rollback of the disorder formerly known as Asperger’s. Nosology elsewhere in medicine typically goes by etiology or mechanism, and beyond platitudes (“massively polygenic”/”theory of mind deficit”), I don’t think we have much insight into either when it comes to autism. Or most mental disorders, for that matter.

      • Peter says:

        In a way it’s a shame that “Asperger’s syndrome” has been rolled back – to quote wikipedia: “A syndrome is a set of medical signs and symptoms that are correlated with each other and, often, with a specific disease” and we’re having difficulty getting to the “often” bit. Another quote from wikipedia, this time the disease page: “A familiar syndrome name often remains in use even after an underlying cause has been found, or when there are a number of different possible primary causes” – again, getting to the “even after” bit would be definite progress.

    • Peter says:

      The trouble with carving at the joints is that this assumes:

      1) There are joints
      2) There aren’t too many joints
      3) The joints are readily identifiable
      4) The relevant joints are readily identifiable
      5) The criteria for determining which joints are relevant aren’t hugely controversial and value-laden
      etc.

      I think, until[1] we have a much firmer grasp on what’s actually going on, the lumping-and-splitting debate is going to continue to be interminable. Not only are the joints within the autistic spectrum controversial, but also the joints between things such as dyspraxia etc. and also the joint with the “neurotypical” population.

      [1] If we’re lucky this will require major advances in research technology and methodology. If we’re unlucky, this “until” will never come because it would require deeply unethical experiments.

  21. Anonymous says:

    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, becauses fetuses are not very important moral agents.

    What about the father’s opinion?

    • Saint_Fiasco says:

      Women have the option of conceiving in vitro and have the fetus implanted into them.

      Is it possible for a man to do that and pay a surrogate mother to carry the fetus? I never looked into it, but it sounds like it should be possible.

      • Marc Whipple says:

        It is, but the legal agreement is not enforceable. The law will treat them exactly as it would any other (presumably) unmarried pair of parents. Though if the mother backs out the father MIGHT at least get his surrogacy payments back. Even if he does, assuming a typical economic structure she’ll get it right back from him in child support.

        That being said, surrogacy transactions happen all the time and most of them go smoothly. I’m just pointing out that you can’t sell a baby, any more than you can will a child.

        • brad says:

          That’s not quite accurate. It’s a very fluid area of law, and varies from state to state, but in at least in some states gestational agreements are accepted by the courts. The intended parents are parents from birth (named on the birth certificate), while the egg donor, sperm donor, gestational mother (and her husband if any) have no parental rights or responsibilities.

          The Uniform Parentage Act (2002) has been enacted in ten states and allows for such agreements, but so do some other states with different nuances.

          • Marc Whipple says:

            I spoke a little too broadly. In some states, the court will take notice of the arrangement.

            However, in no state will you find a court which will enforce such an agreement if they find that it is against the best interests of the child.

            The Uniform Act of which you speak anticipates the gestational agreement will be validated by a court before the child is born. In other words, a court is still going to make a best-interests determination. It’s just going to do it before birth. If the agreement was not validated, it is unenforceable.

            In no state, anywhere, can you say to a judge, “She signed a contract, and then fled the hospital with the kid. We wish the court to enter an order of repossession,” and hope that it will work.

            It is also amusing to note, if you are a cynical old bastard like me anyway, that even if the agreement is unenforceable, the uniform law to which you refer says that the intended parents can be held reponsible for supporting the child.

          • Saint_Fiasco says:

            In other words, a court is still going to make a best-interests determination. It’s just going to do it before birth. If the agreement was not validated, it is unenforceable.

            Can this be done before conception? In vitro fertilizations are expensive after all.

            the intended parents can be held reponsible for supporting the child.

            That protects against the case where a man pays for a surrogate and then leaves, or just changes his mind, leaving the surrogate with an unwanted child.

          • Marc Whipple says:

            The law anticipates that the agreement will be validated before fertilization occurs. I should have said so specifically.

            And yes, yes it does. But it doesn’t limit the potential support obligation to that case.

          • brad says:

            The standard isn’t best interest of the child, because there is no child at that point (even under the broadest “pro-life” position).

            The closest you get to that is section 803(b)(2)’s requirement that a home study be done and the intended parents are “suitable”. That’s far different from a best interest of the child determination. There’s no weighing of the relative desirability as parents between the gamete donors, the surrogate, and the intended parents.

            And once the agreement is validated, the law does contemplate it being enforced through an order to surrender the child to the intended parents (Section 807(a)(2)).

            Edit– Here’s the allegedly nefarious language:
            “(c) Individuals who are parties to a nonvalidated gestational agreement as intended parents may be held liable for support of the resulting child, even if the agreement is otherwise unenforceable. The liability under this subsection includes assessing all expenses and fees as provided in Section 636.”

            It specifically refers to nonvalidated agreements, not agreements which are somehow unenforceable for other reasons (if that’s even possible under the law).

            You refuse to use the legal process laid out in the law at your own peril. Seems reasonable enough to me.

          • Marc Whipple says:

            I’m not a family law specialist. If I’m wrong, I’m wrong. Since the child does not exist at the time of the validation, you’re right in that no literal best-interests test could be made, even if the law provided for one, which it does not. In that I implied that it does, I most certainly was wrong, and I apologize for my oversimplified and misleading assertion.

            However, I would bet a reasonable sum that I am not wrong that the vast majority of judges would be perfectly comfortable interpreting the Uniform Act’s language as if it were a best-interests test, and proceeding accordingly. See, your way, they have less power, and my way they have more. You’re arguing about the wording of the law, and I’m arguing about judges. 🙂

      • Deiseach says:

        Is it possible for a man to do that and pay a surrogate mother to carry the fetus?

        Are you asking is it possible for a man to use his sperm to fertilise a donated egg and have that implanted into a surrogate? Yes, didn’t you read about the spat between Elton John and Dolce & Gabanna about surrogacy? Elton John and his husband have two children, carried to term by a surrogate in California. And they are not the only gay couple to have used this method to have their own biological children.

        If you mean a single man, I don’t know. Some places don’t permit single parents to use IVF/surrogacy. It depends on the law in the particular state or country, I suppose?

    • Anonymous says:

      It’s irrelevant because the only decent justification for abortion is that the bodily autonomy of the mother supersedes the fetus’ preference* to occupy her insides and feed off her as a parasite for nine months.

      *Well, presumed future preference. Most people are glad they weren’t aborted, but fetuses can’t really have preferences.

  22. *I agree about extreme autism so will largely consider borderline aspie/nerd cases.*

    I think have a better understanding of “victim blaming” and why it is an argument. You’ve covered the question “What should an Autistic people do to feel better?” fairly well, but only lightly covered “What should society do about Autism?”. The victim-blaming argument seems to be an (incorrect but effective) way of calling you out for not covering the second question.

    To me as a nerd who could plausibly be on the spectrum, it seems very much like the issue isn’t me but the way social interaction works in society. My views are roughly those at Melting Asphalt here at the end about Asperger’s: http://www.meltingasphalt.com/personhood-a-game-for-two-or-more-players/
    I agree because in sixth grade I had a best friend who had Asperger’s, who in hindsight seems a bit weird, but at the time I didn’t notice anything weird about him, he seemed as normal if not more normal than others. I have similar views about status and values to nerds/aspies and have find them easier to deal with.

    In my opinion, a more nerdy, more aspie world would be better than our current world but it doesn’t exist because status is Moloch so nerds/aspies lose. I am hesitant to cure autism because it feeds Moloch. I do understand others, like the deaf, feel similarly but I don’t think they have as strong a case for Moloch being to blame here.

    Despite that my mind is easier to change than society and despite my desire to be better at playing the games of status that nerds suck at, I just feel wrong because of how much seeking status is feeding Moloch and how much Moloch is hurting other similar to me.

    • HlynkaCG says:

      Hypothetically, if we were to actually discover the mechanism of autism would you advocate “curing” the “normals”?

      • Autism seems to be a spectrum and has probably many different causes; some of which aren’t related to social behavior. Is nerdiness due to some form of mild autism? I would probably advocate “curing” people to at least nerd and probably slightly onto the Autism spectrum.

        • HlynkaCG says:

          And I simply can’t be onboard with that.

          The absolute best-case scenario is that we simply have the inverse of what we have now. There will be a bunch “normies” somewhere complaining that NT is not a disease an that they want go on enjoying things like music and sports. Meanwhile those who have been “cured” will still be complaining about how frustrating it is to deal with those who refuse to conform or who don’t like math.

          The actual scenario would likely be much worse. Moloch will be fed regardless.

          • Yes there would be normies complaining about how people don’t like sports or whatever. The point though is that there would be less (or more productive) depending on your choice of words seeking of status.

            The point is that aspie/nerd culture works well with itself about as well as NT culture does and seems to value things that are more important and that look less like status seeking.

          • HlynkaCG says:

            Halting Thoughts says: The point is that aspie/nerd culture works well with itself about as well as NT culture does and seems to value things that are more important and that look less like status seeking.

            What do you base this assumption on? Past experience would seem to indicate the exact opposite. Heck, we can’t get a group of rationalists to agree on a menu much less a course of action.

            The point being that your hypothetical world would have all the same problems/conflicts that ours does only the majority of the population would less well equipped to cope.

            …and that’s before we start factoring in the positive results of status seeking.

          • Deiseach says:

            You really think that a majority “aspie/nerd culture” would not find some way to engage in status seeking? Honestly?

            A culture where, say, mathematical literacy is valorised (see how often people use von Neumann on here as a sample of Ultimate Genius, a name and a person of whom I was happily ignorant up till now) will have its heroes and its Cool Kids, whom others will imitate, follow and name-drop (“Yeah, as I said the other day to John Smith…”).

            There will be an unwritten but nevertheless tacitly understood scale of what obsessions are ‘better’ than others; it may well be trains will be up there, or it may well be trainspotting will still be the thing even nerds refer to as “only real losers engage in that”. What computing languages do you ‘speak’? Pudsy Bear? Ugh, everyone knows Puddleglum is where it’s at!

            Perhaps, if sports are not given importance, the people whom it is acceptable to tell jokes about will be the likes of sports statisticians?

            And while people may like to tell themselves that what they are interested in or concerned about are “things that are more important and that look less like status seeking”, believe you me – if they’re humans, they’ll engage in status seeking games just as much as anyone ever.

          • Stefan Drinic says:

            The whole PC master race thing the internet has been happy about for a while should say plenty about the kind of status games us nerds very much do play.

          • Nornagest says:

            Nerds spend 100% of the time on status games that non-nerds do. They just have different (not necessarily more practical) criteria for status, and they’re often less aware of being status-seeking.

            If you tell me you’ve never seen a room full of nerds all trying to be alpha nerd, you’re either lying or you’ve never been to a geek event.

          • Who wouldn't want to be Anonymous says:

            @Deiseach

            You met von Neumann? Pssssh. My Erdős number is still lower than yours.

          • HlynkaCG says:

            Who wouldn’t want to be Anonymous says:You met von Neumann? Pssssh. My Erdős number is still lower than yours.

            Wasn’t someone just arguing that nerds don’t play status games? =P

          • I said less status seeking or more useful status seeking, not no status seeking. Apparently people can’t see the difference there. A work where status comes marginally more from intelligence and reasoning and marginally less from of social platitudes seems to be one where people are doing more useful things when seeking status.

  23. Chalid says:

    Has anyone ever studied what fraction of people who are good at science, engineering, etc. are also “nerds”? I suspect it’s lower than the nerds like to think, and that if eliminating autism also reduced the fraction of nerds in the world, it wouldn’t actually impede progress. Brogrammers write can good code too.

    • Science says:

      Given the ‘nerds are as happy as anyone else in high school’ claim above, it’s pretty clear to me that there’s no shared definition of nerd on here, much less society-wide.

    • unsafeideas says:

      It all depends on how do you define “nerd”. For some people, anyone who like math or sci-fi or computer games is a nerd. For others, being nerd requires unusually huge knowledge in those topics to be a nerd. And yet other people do require you to be awkward in social interactions to be called a nerd.

      Note how CEOs and managers are sometimes called “geeks” or “nerds” by journalists – you must stretch definition really to include people who stopped doing tech work years ago and work with people only but we do that.

      On the other hand, “Nerd” itself is often slur word. It is used to insult people. So, if you want to bully a perfectly normal kid whos parents taught him/her programming and kid liked it, you will call the kid a nerd and try to convince others the kid is a nerd and thus valid target for ridicule and bullying.

      Of course you can be good in math or programming without being mild autistic. However, autistic do have limited career options – and math/programming/etc are among those few where they can be useful.

    • Chalid says:

      Yes obviously it depends on the definition of nerd, but surely somebody’s looked at e.g. the relationship between STEM PhDs and high school extracurricular activity choice or something like that.

      • Emily says:

        A lot of the effect-of-being-x-kind-of-teenager research is based on a handful of longitudinal studies that, while big, are not big enough to have a subset of STEM PhDs to study. You are more likely to be able to find something on the relationship between high math test scores and number of friends, and how those relate to later career success, or something else that doesn’t require slicing your sample quite so finely.

        • Chalid says:

          You could go the other way, though, and take a sample of STEM PhDs and look at what they did in high school. STEM PhDs are rather intensively studied after all and it can’t be that 100% of that research effort is aimed at the gender gap (I hope?)

          • Emily says:

            It’s certainly technically possible to do that kind of study, yes. But why would someone do a study like that? What would they be trying to figure out? “What proportion of scientists are nerds?” is not actually a research question of interest. “Does doing science extracurricular activities make you more likely to get a STEM PhD?” totally is, but sampling STEM PhDs, finding some sort of control group for them, and then asking them all a bunch of questions in an attempt to sort out to what degree the extracurricular thing is causal would be considered a bad research design in most circles, so not a lot of people would want to do it. And if you found someone who did, good chance they wouldn’t even report their results in such a way that would let you answer the question you were actually interested in.

          • Chalid says:

            What makes people go into STEM, and what predicts success, is something lots of people are interested in, including especially academics and the government. PhDs are routinely surveyed by the NSF and others when they graduate.

            Anyway the STEM PhD thing was intended to just be a throwaway example of how one might get at the relationship between some concept of nerdiness and science.

      • unsafeideas says:

        If your definition of nerd is “someone whose extracurricular activity choice suggest interest in technology” then I find it highly probable that there will be correlation between neediness and having STEM PhD. Just like people who do art as their extracurricular activity are more likely to become artists later on.

        If your definition of nerd is “social awkwardness” then you will find them more often in careers that tolerate socially awkward and less so where they dont (teaching, public relations, etc).

        If the majority of kids/teachers in high school assume that having interest in tech is something that makes you valid target of bullying – and schools with such culture definitely exist – then socially non-awkward will avoid tech even if they have aptitude and would like it.

        If you can not define what nerd is, then you can not measure how it correlates with whatever later on. Moreover, not every school has that sick climate where interest in tech/games/sci-fi makes you “nerd” and target of mockery. Non-nerds in those schools pick up such activities out out of curiosity, boredom, friendship with somebody interested, liking the teacher, group think and other random reasons.

  24. Sylocat says:

    Clever work, slipping that “The only thing autism has contributed to human society is more efficient slaughterhouses” statement in as an obvious joke but then valiantly defeating the evil Professor Mora LeQuivalence in the footnotes with an argument that hinges on its being actually true. (EDIT: This paragraph was originally far more caustically worded, for which I apologize)

    I kid, I kid. Though I have already heard more than enough harmless jokes and purely abstract thought experiments about how my mother should have run a cost-benefit analysis of aborting me, so forgive me if I’m a little sore on this topic.

    For the record, I would theoretically support a cure being made available for voluntary treatments (while I second the reservations outlined here, I also agree with a lot of this post); I only take issue with the “moral obligation” tripe.

    Not that I think there will be a genetic cure. I’d recommend Robert Sapolsky’s lecture on the evolutionary origins of religion. My guess is that a large chunk of “nerds” merely have a toned-down version of the same mutation set as people who are officially on the Autism Spectrum, so any cure which wiped out the finger-chewer-offers would also wipe out a whole lot of the people you claimed as part of your tribe in your battle with Professor Mora LeQuivalence. And that’s assuming that none of them really are on the spectrum and just not diagnosed.

    Which reminds me, are we also going to cure every other mental illness that is often terrible but also produces geniuses? Because I think Nikola Tesla, Isaac Newton, Karl Gödel, Ludwig van Beethoven, Joan of Arc, and a whole lot of other people going all the way back to Socrates and Pythagoras might want to have a word with you on that. Now, would some of those people have still achieved their accomplishments even if they’d been cured? Yes, almost certainly. Would someone else have picked up the slack if they hadn’t (on the scientific discoveries, anyway)? Well, I’m hardly a supporter of the Great Man Theory, so yes. But be careful about citing “all the good sci-fi/fantasy writers” as an accomplishment for your tribe if you want to argue quantitative measurements that can be annulled with genetic engineering.

  25. Peter Gerdes says:

    Why don’t we keep such obviously suffering institutional patients permanently sedated into unconsciousness (or at least sedated in a way that we are sure isn’t making them miserable) or given ever increasing quantities of opiates to eliminate their suffering.

    Even if this is medically risky so what. Usually we feel that the incompetent shouldn’t be denied relief because of a risk that virtually every competent person would accept for relief from similar suffering. I’d prefer being shot to constant suffering but I think everyone can agree that extreme sedation (or opiate induced nodding) would be preferable.

    As an aside I really don’t see how anyone can coherently claim that abortion isn’t a (significant) moral harm, it would be immoral to take a healthy fetus and deliberately damage it’s brain to render it severely autistic but yet there is no moral imperative to abort a fetus if (counterfactually) you tested it and found it would be severely autistic.

  26. TheNybbler says:

    I pretty much agree on engineering away nerdiness, and I’m doing my part by not passing the nerd-genes on. The species is probably better off with nerds, but… eh, I’m sure “The Ones That Walk Away From Omelas” has been discussed here, and nerdiness is a less extreme case of that. Maybe once nearly all the nerds are gone and everyone is reduced to watching all their clocks blink 12:00 forever, a new group will be chosen as the designated whipping post, and the few remaining biology-inclined nerds can start the slow process of re-breeding nerds from the recessives and partials in the population.

  27. Anon says:

    Maybe content warning “abortion”? I know almost everything is triggering to someone, but I would be happier and better braced for it if that were in the list of common ones people mention.

  28. Santoculto says:

    Some forms of organic disease or disorder, or perhaps most them, have spectral nature. Autism is an internally variable syndromic condition. The most debilitating forms of autism can be considered as diseases but still be complex enough to make any kind of rigid or unilateral conclusion about it, be or not to be.

    Welcome to the world where rigid interpretation of words is replaced by a more literal ”but” also more multidimensional and correct way of doing this, especially the most abstract or pseudo-abstract words such as autism.

    Autism is more to be a disease, depending on that wagon train that you are viewing. Metaphorically speaking, the train wagons are on the precipice, would be the most severe forms of any spectrum disorders, while milder forms will be farther from the precipice (disease).

    The disease has as a basic feature of his expression the ability to produce dysfunction or inability to do the simplest activities on their own by weakening the body of his most minimalist potential of individual/independent physical action by short to long term.

    Autism is still a pseudo-paradox because it is characterized by great tendency to produce rational thought (or more rational, comparatively speaking) to its ”carriers”. It’s easy to say that schizophrenia is a disease, but it is much more complex and difficult because autism has shades of ideational realism, hyper-normal thinking or hyper-analytic thinking.

    It’s easy to say that a person listening nonexistent voices to be mentally ill, but it’s hard to tell someone who has sense of reality more accurate than the average in SOME PERSPECTIVES (but with large deficit in instinctive terms) as a mental ill.

    Just look at the multitude of ” normal ” ones in mass events such as sports, to realize that it is complex to say who is more mentally ill. Autism without any physical problems it causes in a good portion of its carriers, it does not seem that soo bad.

  29. NN says:

    All of the statistics here seem to have a major potential problem: autistic people with more severe problems are more likely to be diagnosed as autistic, since they or their parents are more likely to talk to psychiatrists about that sort of thing. I would also assume that they are more likely to be end up being selected for medical studies about autism.

    If we accept the (very likely from where I’m standing) theory that the recent increase in autism rates is due to broader diagnosis rather than an actual increase in incidence, then this bias will be even greater the further back you go as in, for example, those “adults with autism” studies.

  30. caryatis says:

    Scott’s description of autism seems analogous to how I would describe prostitution (or sex work in general):

    Some 5-10% of prostitutes are lucky: relatively rich, educated, not drug addicted, childless. These are the people who freely choose to do sex work without being driven into it by abuse, poverty, addiction or single motherhood. They often only stay in the profession for a short time before going back to school or taking up a mainstream profession. These are also the people with the time and desire to write website articles with sexy photos, articles that talk about how terrible it is that people stigmatize sex work and that make it seem like a safe, legitimate profession.

    Meanwhile the 90-95% are busy trying to survive day by day, dealing with the monthly rapes, beatings and arrests that come with streetwalking, and they would love to get out if they had any other options.

    • Emily says:

      I have known some sex workers over the years and neither of your descriptions looks familiar. The women (and man) I knew all had some sort of issue (mental health, drug use, childhood abuse). But they also had other options, and they were meaningfully making choices about their lives. Probably not good choices, but choices nonetheless.

      • Peter Gerdes says:

        The women who turn some tricks using craigslist from their college dorms or who do some escort work while trying launch their career don’t show up as sex workers.

        The very fact that these people *have* opportunities means they are extremely warry of having their side job documented or discovered. All but the very closest confidants of theirs (and even not those) won’t be told and they will see their private doctors instead of going to clinics.

        Are these 5-10% of sex workers. I would be shocked. Maybe 5-10% of very high end escorts (partially for the banal reason these features *make* them high end). However, I have certain knowledge that more than you would expect exist.

        • Emily says:

          You can be a college student and an escort and still have been sexually abused as a child. You can be a single mother and be stripping because you prefer the pay and working conditions to McDonalds. What I’m objecting to in caryatis’s comment was this sense that you have a handful of people who are “freely choosing” this and then a vast majority with no choice in the matter. I think the reality is a lot more complicated.

          • caryatis says:

            I didn’t set up a dichotomy between people who make choice and those you don’t. That would be absurd. But some have a better set of options to choose from.

    • stillnotking says:

      Where are you getting these statistics? Last I read, the vast majority of sex work had migrated to the internet and become much safer than traditional streetwalking. I certainly don’t see as many women “working the corner” as I did as a teenager in the ’80s.

      I don’t doubt that most prostitutes would rather be doing something else, with the obvious caveat that “something else” would need to pay as well as prostitution; that’s always the rub, isn’t it?

    • Winter Shaker says:

      I think you may be presenting a false dichotomy here, or at least …something seems off.
      Sure, a lot of sex workers may not particularly enjoy what they’re doing, but what a lot of them are saying is that criminalising sex work (or criminalising their clients, as in the ‘Nordic model’) makes things even worse for them – that the bad stuff you describe is either exacerbated or entirely generated by the criminalisation of prostitution, rather than prostitution per se. The ones that are doing the writing trying to destigmatise it are not generally arguing that it is an ideal profession, just that it could be a lot less terrible for those who have decided it is their best option, if it weren’t forced underground.

      It’s pretty much analogous to the situation in drug policy where a lot of the things commonly thought of as drug-related harms (gang violence, overdoses, drug profits funding terrorists etc) are at least partly prohibition-related harms that would be significantly reduced if the market were not forced underground.

      Though I suspect that in both cases, a major force standing in the way of more human regulatory policies is that a lot of people see both activities as violations of purity taboos, requiring a vengeful response rather than a public-health-focussed one.

      • caryatis says:

        Well, as with autism, yes sex workers would be better off with less stigma, but some (most?) of the harm of the profession would remain. For instance, it would be easier to transition to mainstream work if you could put prostitution on a resume…but you would still have the wrong set of skills for most workplaces. And it would be safer if you could call the cops on an abusive client without fear of arrest…but you would still have to deal with abusive clients.

        • Cadie says:

          To a point. There would still be abusive clients, yes, but a substantial fraction of them would be deterred from outright abusive behavior by the fact that the chance of them being reported and arrested is much higher under decriminalization or even loose legalization than when that type of sex work is illegal. And there would be more peaceful, law-abiding clients (the ones who won’t risk seeing a full-service sex worker because it’s illegal, but otherwise would like to, so when it’s decriminalized/well-legalized they occasionally will), which further reduces the portion of clients who behave badly.

          As for resumes, legal sex work can’t reduce stigma, but it will reduce the chance that a sex worker will have a criminal record. So while she might not be able to use her work history to help her get a different job, at least she has the option of leaving it off her resume entirely.

          Fewer dangerous clients and not having to tell future employers what one was doing are big benefits, even if they’re imperfect.

          • Protagoras says:

            I’m inclined to disagree that legal sex work can’t reduce stigma. Something’s being illegal tends to increase the stigma on it.

  31. Anonymous says:

    It is, I believe, a common feeling that it is harsh and judgmental to have a concept of “normal.” But normality, Aristotle’s version (the way things work, well, generally and for the most part), solves this kind of problem. Autism, like anything else that makes people freak out from normal stimuli or unable to learn language, is a deviation from normality. So’s deafness (going off a post above). Maleness, femaleness, blackness, whiteness, aren’t (of course).

    It’s not harsh to recognize a handicap as a bad thing. It’s the handicap that’s harsh.

    I may have a different perspective because of my autistic child. He’s got other disabilities and is hit so hard he will never hold a job or live alone. I don’t want people to think he’s normal; they _should_ treat him differently, _for his safety_. It’s OK. Feeling less-than someday (if he ever reaches that level of cognition) is sad, but it’s better than someone trusting him with a car or power tools.

  32. Wondering What says:

    It’s hard for me to keep this straight, but let me try: Autism is a condition but not a disease so it doesn’t need to be treated and in fact prescribing treatments is discriminatory and stigmatizing; deafness is not a disability but just a different way of experiencing the world and therefore it doesn’t need to be treated and deaf children shouldn’t even be offered cochlear implants because it stigmatizes them; Gender dysphoria is a medical condition but not a disease so it does require treatment in the form of a lifetime of hormone therapy and possibly surgical intervention. Withholding treatment is either the only moral option or an unconscionable moral failure depending on whether or not the non-disease falls into Column A or Column B.

    Did I miss anything?

    • Wrong Species says:

      You’re begging the question. Why is autism not a disease? Why is deafness not a disability? Where is the line between “condition” and “disease”?

      • Jon Gunnarsson says:

        You’re missing the satire.

      • Peter says:

        I always treated “condition” as a term that covered diseases, disorders, disabilities, syndromes, injuries and a whole bunch of other stuff; basically, anything you ought to be able to get an ICD-10 code for.

        The “disease” framing has some particular oddnesses to it.

        Other things that are not usually considered “diseases”: broken elbows. Something considered bad: check. Something you’d want to prevent: check. Something affecting the body: check. Something diagnosable by physical methods: check. Something you can get pills for – well sort of, you can get painkillers for sympomatic relief. Something you can have surgery for: if severe enough, check. Something you can get better from: check. Something highly unlikely to be a part of someone’s identity: check. Something you can get sick leave for: check. Something you’d call a disease??? Hahahaha.

    • vV_Vv says:

      Did I miss anything?

      I think so.

      Hormonal therapy and sex reassignment surgery are not a true cure for gender dysphoria, they are at most palliative care. The cure would be something that makes gender dysphoria go away, making patients identify with their biological sex. Alternatively a prenatal test that allows parents to selectively abort fetuses that are going to develop gender dysphoria, while not a proper cure, would also accomplish the task of humanely reducing the number of people with gender dysphoria.

      Ask “Social Justice” advocates what they think about that. Spoiler: SJ advocates (not just the rabid SJWs, but also the reasonable ones like Ozy) generally don’t want a cure for gender dysphoria to be created, and would consider selective abortion of fetuses predisposed to gender dysphoria an abuse.

      They tend to advocate for the right of people with gender dysphoria to be treated with dignity by other people, which is fine, except that they seem to be constantly try to push what “treated with dignity by other people” means: in order to be basic decent human beings it seems we need to recognize tens of different gender identities, each with its set of weird pronouns, and we don’t even get a cookie in return! Some go as far as accusing of “transmisogyny” people who refuse to date transgenders.

      I think I see a pattern there: SJ advocates are trying to increase the number of people who are recognized as having some kind of disability, or “marginalized/unprivileged/oppressed” condition, and demand that the “privileged” people around them, or society in general, make increasingly costly special accommodations for them. Reducing the number of “oppressed” people by a cure or eugenic abortion, would fundamentally thwart this plan, hence they oppose it.

      • TheNybbler says:

        Suppose a more complete sexual re-assignment were possible, one in which the patient became completely phenotypically a member of the target sex. Would that count as a cure, or is it necessary that the cure change the mind rather than the body?

        • HlynkaCG says:

          I don’t know.

          It does raise some interesting issues though. For instance, arguments about Gender equality become moot. A woman wants to become football players or Navy SEAL? Tell her to “man up and grow a pair” literally.

  33. B For Bandana says:

    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.

    That’s just clearly the answer, I think. There is no cure now, so why even care about hypothetically denying people a cure that doesn’t exist, when in return you get some good rhetoric that helps now?

    This could be an example of an entire new genre of moral philosophy. Out of the set of literal moral stances that we disagree with, which of them are symbolic of the correct side of different moral dilemmas which are both more important in the short term, and cannot easily or convincingly be argued for any other way, and what does this imply about how we should talk or even (gulp) think about the literal moral dilemma?

    Fho-dhrfgvba: Nsgre pbafvqrevat guvf dhrfgvba ybat rabhtu, ubj nowrpgyl ner jr nyy tbvat raq hc univat gb ncbybtvmr gb Neguhe Puh?

    • Sylocat says:

      I think it’s just another iteration of the Trolley Problem, using an absurd hypothetical scenario to address a real-world point.

      And with similar potential for abuse.

    • Tibor says:

      The problem is that if you manage to convince everyone that there is no reason to try to cure autism, you will end up with fewer (or non) resources available for the cure research so you might delay or prevent the creation of the cure. And if someone discovers it anyway, you will have a harder time convincing the insurance companies to pay for it and people administering it in general (even to those cases where the autist would obviously prefer to be cured).

      It is trading a long-term benefit (getting rid of autism’s negative symptoms sooner) for a short-term one (more publicity).

    • Deiseach says:

      in return you get some good rhetoric that helps now

      Does it help? Sure, maybe it helps the autistic person who’s able to write quirky, amusing media-blogging about “Growing Up Autistic” and how they absolutely adore maths and couldn’t imagine a world where they weren’t passionately devoted to the subject, with accompanying cute-fey picture of winsome 20-something gamine author.

      “Well gee,” say all the normal people this is pitched at, “being autistic isn’t so bad after all, I guess! All the colours of the wind and all that jazz!” And so the idea of treating autism as a disease or as a disabling condition becomes conflated with stigmatising it. Autistic people are just as capable as anyone else, they simply have some charming eccentricities! You don’t need to do anything (apart from a few minor accommodations analogous to providing wheelchair-accessible premises) for autistic people and talking about treatments or even worse, cures, is saying you want to commit genocide on a sub-population you regard as inferior.

      But does it help the parents of the 18 year old who has to wear a motorcycle helmet 24/7 because otherwise he will bash his head to a bloody pulp? The boy who will never write quirky, amusing blogs and whose photos aren’t cute or feyly attractive?

      Because then it becomes “Stop making things harder for the functioning autistics by reminding everyone it’s a spectrum and it’s not all cute eccentrics” and “It’s your fault for not being able to care all the time forever and ever on your own without a break; it’s your kid, you deal with him and don’t dare ask for any kind of treatment that will force him to assimilate to what mundane society considers normal”.

  34. Tibor says:

    If you suggest that it should be an obligation* to use the genetic treatment to fix the fetus’ autism, why should it not be an obligation to abort an autistic fetus? As long as a human fetus is worth the same as a cow (or less), then this does not mean significant moral costs. One could say that an abortion probably means psychological trauma for the mother (and mostly also father) and it is not exactly risk-free in terms of her future fertility either. But assume that someone comes up with a way to recognize the autism very early on, so that more or less something close “day-after pill” is enough to get rid of the fetus while there is no emotional attachment and no physical risk either. Then I think that if genetic treatment is an obligation (when available), this kind of abortion is too (when genetic treatment is not yet possible or too expensive).

    *I am not sure whether you mean a moral or a legal obligation…I think it is a moral obligation to help a drowning person as long as it does not require you to risk your life while doing so, while I think it would be a terrible idea to make it a legal obligation since suddenly people would start avoiding anything that looks like a drowning man since it is not always clear when you are risking your life and when you are not and nobody wants to be sued. In this sense, I think that in the scenario I describe, an abortion of an early autistic fetus is a moral obligation (and I agree with the genetic treatment being one), but I still would feel very uneasy about it being a legal obligation (similarly with the genetic treatment). The reason is probably that I instinctively do not like “one size fits all” solutions, especially when backed up with force (which, at the end of the day, legal obligations always have to be).

  35. Max says:

    This sort of post is depressing because it shows how utterly incapable we as society are to solve issues even when we have solutions
    Diseases and suffering caused by them could be radically culled down by eugenics. Alas it was buried. We accepted dysfunction, disability, deformity and decrepitude. Thus we suffer their consequences

    “helping the needy is exactly the sort of thing the government should be doing”

    Except “helping the needy” is not essential function of government. Essential function of government(like of all control systems) is to keep order and functionality. That includes culling and removing dysfunction (if repair is not possible)

    • John Sidles says:

      Max opines  “Helping the needy” is not [an] essential function of government. [The] essential function of government (like of all control systems) is to keep order and functionality. That includes culling and removing dysfunction (if repair is not possible).”

      Comedy gold  “The rationality required is within the means of even the smallest neoreactionary communities. The necessary governance principles are simple, easy to understand, completely credible, and convincing. [spectator] Gee, I wish we had one of them  doomsday devices  empathy-free essential-function governments!”

      Appreciation  Kudos to director Stanley Kubrick for vivid far-spectrum insights into empathy-free essential-function cognition.

      Modern heirs  Dominique Eddé’s Kamal Jann (2015) is a modern portrait of a world that (like Kubrik’s) is devoid of venues for empathy. As far as I know, no-one is developing Eddé’s novel as a darkly-comedic globally-autistic screenplay … still the history of Kubrik’s Strangelove shows us that such a 21st century artistic vision would be entirely coherent.

      • John Sidles says:

        Empathy  Children learn it naturally,
        couples sing its praises,
        soldiers drink from its pear-can grail,
        racists do not feel it.

        For some reason (but what is it?)
        economists seldom figure in these works.
        —–
        Acknowledgement Appreciation and thanks are extended to MIT philosopher/linguist Norvin Richards, whose website hosts the above-linked short story by Eudora Welty “Where Is the Voice Coming From?” (1963). Welty wrote this story, in a single day, upon hearing the news of Medgar Ever’s assassination.

        Welty’s story presciently dissects the rational yet chillingly non-empathic cognition of Evers’ assassin. In economic terms Welty’s narrative is straightforward: it’s the simple tale of a citizen whose actions were rationally motivated by non-empathic preferences.

        • HlynkaCG says:

          You keep using that word, I don’t think it means what you think it means.

        • John Sidles says:

          Kirman and Teschl’s “Selfish or selfless? The role of empathy in economics” (2010) survey the considerable economic literature associated to empathy. The natural question “Does studying economics breed greed?” has the well-documented answer “Yes”:

          Less charitable giving:  In the U.S., economics professors gave less money to charity than professors in other fields — including history, philosophy, education, psychology, sociology, anthropology, literature, physics, chemistry, and biology. More than twice as many economics professors gave zero dollars to charity than professors from the other fields.

          More deception for personal gain:  Economics students in Germany were more likely than students from other majors to recommend an overpriced plumber when they were paid to do it.

          Greater acceptance of greed:  Economics majors and students who had taken at least three economics courses were more likely than their peers to rate greed as “generally good,” “correct,” and “moral.”

          Less concern for fairness:  Students were given $10 and had to make a proposal about how to divide the money with a peer. If the peer accepted, they had a deal, but if the peer declined, both sides got nothing. On average, economics students proposed to keep 13 percent more money for themselves than students from other majors.

          Comedic and philosophical gold  These considerations explain why the intersection of economic self-interest with empathy has historically yielded rich veins of comedic and philosophical gold.

  36. Asynchromouse says:

    Anyone read the novel “The Speed of Dark” by Elizabeth Moon? The protagonist is high functioning autistic, reasonably well supported, and offered a cure. Very interesting treatment of the subject.

    • Hyzenthlay says:

      It was an interesting novel. I hated the ending though. Not necessarily because (SPOILER ALERT) the protagonist takes the cure, but rather because his decision made no sense in the context of everything leading up to it. Through the whole book he’s very uneasy with the idea of changing and the doctors who want to perform the procedure seem creepy and untrustworthy, then suddenly, for no apparent reason, he decides he wants it.

      It might have made more sense for an individual with more serious struggles, but Lou is more high-functioning than even most non-autistic people. Most of the difficulties he runs up against come from prejudice.

    • keranih says:

      I read it, found it very entertaining and thought provoking. Thanks for bringing it up here.

    • Baby Beluga says:

      I read it after seeing this comment, and really liked it. Thanks for mentioning it!

  37. stargirl says:

    What do you mean by “Autistic” when you say this: “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.”

    Do you mean the shy, socially awkward person who likes math and trains. Or do you include the more extreme examples you gave in the essay? I am fine with the former. I am not fine with the later.

  38. Hyzenthlay says:

    Talking about a “cure” for autism is kind of like talking about a “cure” for Down Syndrome, or introversion; it would probably mean changing someone’s entire neurology, so once you “cured” that person they effectively wouldn’t be the same person anymore. That’s the autism advocates’ central objection to it, I think. Any cure would be indistinguishable from death of the self.

    The question becomes a bit more complex when you talk about whether it’s ethical to alter someone’s developing neurology in the womb so they won’t become autistic later in life, or for that matter just abort likely-to-be-autistic fetuses the way we currently do with 90% of Down Syndrome fetuses, but that’s a whole other issue.

    As others have said, part of the problem is that autism is just a poorly defined term that can mean a lot of different things. If you’re talking about someone nonverbal who is banging zir head against the wall all day, then yes, by all means, we should try to address zir suffering. But that means finding out what’s causing the suffering, and saying “it’s caused by autism” isn’t really an answer, because that’s simply an umbrella term referring to traits that tend to be clustered together. The cause may be a comorbid condition or it may be some internal pain they’re experiencing that they don’t know how to explain, or the cause may be the environment they’re in…because, like you said, for someone with sensory issues just being in an environment like an institution, regardless of how well-run it is, is torture. I’d probably be a screaming mess if I were stuck in an environment where I had no control, too.

    I don’t think the point of the neurodiversity movement is to deny that there are people with real and serious problems and that many of those problems have some basis in biology, but rather to shift the focus away from making people “normal” and toward alleviating suffering and helping autistic individuals lead better, fuller lives.

    • Anonymous says:

      “Talking about a “cure” for autism is kind of like talking about a “cure” for Down Syndrome, or introversion; it would probably mean changing someone’s entire neurology, so once you “cured” that person they effectively wouldn’t be the same person anymore. That’s the autism advocates’ central objection to it, I think. Any cure would be indistinguishable from death of the self.”

      This argument applies to any change that anyone could make. Teach your kid to read? You’re killing the illiterate version of them! Toilet train your kid? You’re killing the version of them that has to wear diapers! I’m talking here about parents making choices on their kids’ behalf but this applies even more strongly for changes that people are able to choose for themselves.

      As I said in my comment above: imagine that instead of A Cure (cue thunderclap), we are talking about a several year process, over which time the person gradually loses whatever characteristic that’s bad-but-we’re-not-going-to-call-it-bad. Does that feel less frightening than the idea of A Cure which causes the person to transform into the fully changed version of themself in an instant? I think for many people it might.

      More generally I cannot think of any real example of a situation where “people with a disadvantage who have formed an identity around it, who benefit from this group identity existing in the form of an ingroup feeling, psychic benefit etc., should be able to forcibly prevent members from fixing their disadvantage and thus leaving the group, because the cost imposed on the remaining group members by their group getting smaller is greater than the benefit the individual gains by fixing their disadvantage” is ever a correct analysis. If you make up some pretend example it might be, but a real-world example? No, so far as I can tell, telling people that they should not be able to fix their actual real, physical, obvious problem, which is causing them actual real obvious disadvantages, because it would make other people with that problem who don’t want to fix it sad, is monstrously evil – a truly horrible, nasty idea.

      Perhaps one reason for this is that groups can form around literally anything, and if there wasn’t a group identity around (say) having migraines, then a group identity would form around something else in its place, something that doesn’t have an obvious literal real physical actual disadvantage like having migraines.

      EDIT: I noticed another reason to expect the claim “stopping this person from leaving this group because the cost in psychic benefit from group numbers is greater than the benefit to that individual” to always be false. Unlike a regular public good problem, in this situation the individual leaving loses out on the benefit of being in the group at the same time. So it would require the individual leaving to care less about the group than everyone else – unlike, say, air pollution, where even if you care more about clean air than being able to burn coal, you can leave the group (of non-polluters) and still get the benefit of being in the group (non-polluted air) (except you can’t, because everyone else will do the same thing).

      • Hyzenthlay says:

        If a cure existed and an autistic person wanted it, then of course they’d have a right to take it, and others would have the right to not take it, as they chose. Currently it’s more a question of how much effort and money should be devoted to searching for a cure verses searching for ways to improve the lives of autistic people as they currently are.

        And yes, of course everything is always in every sort of change so in some sense our old selves are always dying and being reborn. But I think there’s a significant difference between the sort of minor, gradual changes that you’re talking about and the sort of change that would completely alter someone’s way of thinking and perceiving the world, regardless of whether that change was instantaneous or took several years.

        Imagine that there was a procedure that would make you smarter and happier but it would involve completely replacing your brain, piece by piece, with synthetic nerve tissue over the course of, say, a year. Is that still you?

        Even if you knew the individual who came out on the other side would be better off, would you see this as a desirable outcome? Maybe some people would. I can’t say it would be all that appealing to me.

        • Anonymous says:

          “Imagine that there was a procedure that would make you smarter and happier but it would involve completely replacing your brain, piece by piece, with synthetic nerve tissue over the course of, say, a year. Is that still you?”

          Yes.

          More generally, it doesn’t seem to me that a change from autistic to neurotypical is fundamentally different than any other kind of change – it’s a difference in degree, not in kind. People change their opinions, have new experiences, learn new skills, develop new goals and new worries, gain and cure mental illnesses. I have personally undergone changes that have radically changed my way of thinking and perceiving the world – and yet I still feel like me.

          • Hyzenthlay says:

            Yes.

            Okay, a step further. Let’s just take out your whole brain at once, dispose of it, and replace it with the brain of a smarter, happier person who just lost zir body in a car accident. Still you? If you say “yes” I’m going to be really surprised.

            Granted that’s an extreme example, I’m just establishing that there is a point where a change is so extreme that it’s effectively the same as killing someone.

            Most new experiences and life changes people go through involve adding onto what’s already there. If I have a new experience or learn a new skill, I’m not necessarily losing any of what I had before, I’m building on it. It’s adding new rings to the tree as opposed to hollowing out the tree and filling it with something else.

            I imagine an autistic to allistic transition would be somewhat like a procedure that would change you from gay to straight or vice versa (or asexual to sexual or whatever), or would change your sense of gender idea from male to female or vice versa, or would make you suddenly start perceiving the world as if you’re stoned all the time, or raise/lower your IQ by 30 points.

            Maybe none of those things would destroy your sense of identity completely, but at the same time, I think for most people the changes would be significant enough to make them feel like they’d lost something fundamental.

            Those boundary lines are going to be different for everyone. If people are choosing to alter themselves, I don’t consider that unethical. The ethical questions come in when people are being pressured or outright forced to alter themselves, even if the change is generally regarded as a good thing. If you had a machine that could raise a person’s IQ, I don’t think it would be ethical to do that to anyone without their consent either.

          • Rebecca Friedman says:

            Responding to Hyzenthlay:

            I think losing vs. adding onto has limits as a means of defining whether the person is still you. As a young girl I was cripplingly shy; I lost that as I grew up. You could say I just gained social skills, but that isn’t how it felt; the shyness felt like a real, concrete thing, that made me freeze up because I would say the wrong thing and everyone would hate me forever (yes, irrational, I knew that even at the time, that just didn’t fix it), and over time it got less present. It’s a quality I lost (at least most of). I’m quite glad I lost it; I wouldn’t mind at all losing it completely; I don’t feel that doing so made me any less myself.

            While I’m at it, I can think of other things (like being scared of spiders) I wouldn’t mind losing…

            That said, I do agree with the overall point that there is a really big difference between people choosing to alter themselves and being forced into it. And I’m not at all sure I’d take the first hypothetical (brain completely replaced by synthetic nerve tissue) either.

  39. This entire business is just due to the term “Autism” being used way too broadly (which the psychiatric community only made worse by collapsing Asperger’s into ASD.) If “Autism Spectrum Disorder” means everything from “People like Scott” to “People who can’t talk or put their pants on in the morning,” then of course you’re going to get a large chunk of people on the internet–where people like Scott tend to hang out, since intellectually disabled people in institutions probably have trouble getting on the internet–who say, “Wait a minute, I really really don’t think there’s anything all that *wrong* with me, I really would prefer if you didn’t talk about me like I’m some hospitalized mental patient who needs to be lobotomized.” Because, obviously, people like Scott are actually pretty normal people who hold down jobs, have friends and spouses, raise children, etc. etc.

    In between “People like Scott” and “people who can’t talk” lie “People formerly diagnosed with Asperer’s.” These are your potential Temple Grandins; kids with obvious problems who still might manage to pull through and become happy, functional adults. These are the kids people are fighting about, not the ones who can’t talk. Obviously if you could give a non-verbal kid the ability to talk, they and their parents would probably jump on it. But when we start talking about whether “stimming” should receive some sort of treatment (where the most common treatment is probably spanking,) or if it should just be left alone and accepted as harmless but quirky behavior, then the ethical issues become much muddier.

    Put clear divisions between “Autistic”, “Apserger’s” and “kinda Aspie”, and make it clear that trying to “cure autism” only refers to people with actual autism, and most of this debate would go away.

    • LPSP says:

      I largely agree with this – especially the fact that autism is a diluted and worthless term.

      I must add that I was diagnosed with Asperger’s syndrome in my late childhood, largely because I was a smart loner who frequently talked back to teachers when I thought they were wrong. I admire Temple Grandin’s accomplishments in slaughterhouse improvement as well as some of her genuine fearlessness and wisdom, but I can also say that a lot of her behaviour thoroughly weirds me out and I feel no – how to say, connection? oneness? with those traits.

      I feel much more like Scott, or Eliezer Y (whom I guessed as aspergers after reading a tonne of his writing, and after watching one video debate am now almost certain), in terms of detail-interested behaviours than I ever had done with my official diagnosis as “communication-impaired”. Yes really, that is the UK defintion of asperger’s syndrome and thus what is officially told to any prospective employer or educator should they type it into google. I don’t tell people that I have asperger’s syndrome frequently in real life for this very reason.

  40. Meredith L. Patterson says:

    > 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?

    It strikes me as highly unlikely that any “cure” will ever be developed for having a brain fabricated at a 22nm pitch instead of a 45nm pitch. (Yes, that’s a metaphor, but there is strong evidence that the brains of autistic individuals contain many more, smaller minicolumns — the smallest neuronal module capable of processing information — than those of neurotypical individuals. The difference in size appears to be the result of individual minicolumns having less ‘insulation’, which leads to crosstalk.) So, probably not a molecular answer, but transcranial magnetic stimulation appears to show promise.

    • BBA says:

      My brother has been receiving transcranial magnetic stimulation for his syndrome-formerly-known-as-Asperger’s. He may be showing mild improvement but it’s hard to distinguish from his usual ups and downs.

      I sympathize with my brother, a lot more than the rest of my family does. I see a lot of myself in his behaviors, or rather who I would be if I weren’t willing to silently suffer for the sake of functioning in society. I’ve got the nerdy-math-trains pattern in spades, but I’ve been able to hold down a job for the past several years and I don’t see him ever being able to. I suppose this makes me a low-functioning neurotypical.

      Honestly, if there were a cure for even my mild form of just-off-the-spectrum, I’d take it, no questions asked. It’s no fun not being able to make friends, not enjoying what everyone else enjoys.

  41. Bugmaster says:

    Let’s say there was a pill — let’s call it “Uberfinil” — that would make you think faster, see and hear better, and also allowed you to psionically send text messages to other pill-users with the power of your mind. Would you take it ? I personally would, but maybe my preferences are a little different from yours. Even if you wouldn’t take Uberfinil — will you really attempt to stop others from taking the pill ? Why ?

    I am not autistic, nor do I know anyone who is, so it’s possible I’m missing something here, but still…

    • Linch says:

      Wow…I just have to say that I’m pretty amazed at the structure of this argument, and the fact that it might be necessary for some people.

      Completely flips the bioethics enhancement vs. normal functioning argument on its head.

  42. Anonymous says:

    >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.

    And this is why I am not a libertarian. Unless you’re leaning extraordinarily hard on the word “flourish”.

    • Jon Gunnarsson says:

      I’m not sure what this has to do with libertarianism. I don’t think most libertarians would agree with Scott here. For what it’s worth, I’m a libertarian and think that what this hypothetical woman wants to do is quite immoral.

      • NN says:

        It seems to me that libertarianism is almost completely irrelevant to the abortion issue. All non-anarchist libertarians believe that the government has a duty to prevent and punish murder, so if you believe that abortion is murder then there is absolutely no contradiction between being a libertarian and wanting legal restrictions on abortion. Conversely, if you don’t think that abortion is immoral (with or without caveats about trimesters, etc.), then you’ll likely oppose a general ban on abortion whether or not you’re a libertarian.

        • brad says:

          I think your post begs the question by skipping homicide and going straight to murder.

          A libertarian could conclude that a fetus is a rights-bearing-entity capable of being murdered, but nonetheless conclude that self-ownership and/or self defense principles meant that abortion was justifiable homicide rather than murder.

          While I agree that libertarianism doesn’t seem to have much to say on the homicide question, I think it does on the murder question. Certainly I would expect most libertarians to object to a law that categorized as murder the refusal to donate blood where such a blood donation would save a third party’s life.

          • Mary says:

            On the other hand, I would expect most libertarians to object to a law that categorized as not murder the insistence of retrieving an already donated kidney from the body of the recipient, on the grounds that it would, in fact, be the recipient who was torn open (without consent).

            (Especially, of course, if the doctors retrieving it were at pains to choose the method most likely to kill the recipient.)

          • brad says:

            Yes, there are various different ways a libertarian could analyze the issues. (Although I’m not sure that all libertarians would reject organ repossession in all circumstances.)

            My overall point was that just because libertarianism doesn’t have much to say on the question of when a fertilized egg becomes an entity capable of being murdered doesn’t mean that libertarianism has nothing to say about the question of whether abortion is murder.

          • Mary says:

            “Although I’m not sure that all libertarians would reject organ repossession in all circumstances.”

            One notes you start with the presumption that the exception is the right to repossess, not vice versa.

  43. Mary says:

    ” As best I can tell fetuses have less personhood than cows, and I had a cheeseburger for dinner last night.”

    Under what definition of “personhood” does a cow not have more personhood than you do while asleep, while simultaneously making that statement true?

    (An awake cow, of course.)

    • Nornagest says:

      I don’t intend to start another tedious abortion debate with this, but asleep or awake, there’s a hell of a lot more state in my head than in a cow’s.

      • Mary says:

        Prove it.

        • Nornagest says:

          I already spend too much of my time here slowly and painfully proving the very very obvious. How about you tell me an experiment that doesn’t point to more persistent state in adult humans?

          • Mary says:

            Calling something “very, very, very obvious” does not make it so.

            Show that your SLEEPING mind exhibits more “personhood” than that of a cow that’s awake.

          • onyomi says:

            I’m going to agree that when you’re in non-REM sleep your brain is basically dead, other than the sort of basic functions, like keeping your heart beating, which cows, of course, share.

          • Nornagest says:

            Show that your SLEEPING mind exhibits more “personhood” than that of a cow that’s awake.

            I didn’t say “personhood”; that’s a hopelessly slippery concept, and one I suspect with more legal than ethical significance.

            I said “state”, or “persistent state”, hoping to ground this personhood talk in something we can kinda-sorta estimate. Now, it’s still not especially well defined — we could be talking about the connectome, the amount and detail of memories, ability to act on experience, or a bunch of other stuff — but all the ways I can think of grounding it point away from cows and shouldn’t need much proving.

            But this is starting to resemble exactly the sort of tedious argument I wanted to avoid, so I’m gonna stop here.

          • Cauê says:

            I said “persistent state”. Now, that’s not especially well defined — we could be talking about the connectome, the volume of well-formed memories, or a bunch of other stuff — but all the ways I can think of grounding it point away from cows and don’t need much proving.

            To the extent that this difference matters morally, it’s only because you will wake up, at which point the different “persistent state” will allow you to have different experiences than those of a cow. Right?

            I’m a lot less interested in discussing the word “personhood” than in trying to pin down what it is that we care about, and why.

          • Nornagest says:

            To the extent that this difference matters morally, it’s only because you will wake up, at which point the different “persistent state” will allow you to have different experiences than those of a cow. Right?

            Well, sure, but that “only” covers a hell of a lot. We could symmetrically say that consciousness “only” matters morally because it grants people the ability to integrate new experiences or make decisions based on old ones.

            Personhood is a damnably slippery concept, and I think we’ll have trouble reducing it to any single aspect of cognition. But if we’re gonna talk about degrees of personhood, I think that has to be grounded in — or at least bounded by — some notion of persistence. We don’t have a good way to measure consciousness or e.g. ability to feel joy, and that stuff tends to strike me as more a satisficing than an optimizing criterion anyway.

          • Cauê says:

            Yes, but that “only” is what we should be thinking about. What are we actually trying to protect/avoid/maximize here? What should we? The way I see it, arguing about “personhood” is not even trying.

            ETA: Does something “have more personhood” than something else? Do I even care? I think the answer to “why should I care” would be one of those things that make the original question look pointless.

          • Nornagest says:

            The way I see it, arguing about “personhood” is not even trying.

            Which is why I was trying not to, yes. It would probably have saved me an argument if I’d been a little more explicit about that.

          • Ghatanathoah says:

            Show that your SLEEPING mind exhibits more “personhood” than that of a cow that’s awake.

            A sleeping human has a frontal and prefrontal cortex that has complex preferences about the future stored on it. A conscious cow does not.

            We know this because your preferences remain the same when you wake up as they do before you go to bed. If your brain did not store preferences you would have radically different preferences every time you woke up.

            Also, researcher have actually begun to identify which parts of your brains your preferences are stored in. They are much, much bigger in humans than in cows.

          • onyomi says:

            “A sleeping human has a frontal and prefrontal cortex that has complex preferences about the future stored on it.”

            So a sleeping human has the *potential* to be a moral agent as soon as he/she wakes up, like a fetus has the potential to be a moral agent once he/she is born and grows up. The sleeping human example is a reductio to show that potential for moral agency matters at least somewhat: it can’t be *only* about the level of agency experienced at a given moment, since we all become catatonic non agents for a few hours every night.

          • Mary says:

            “A sleeping human has a frontal and prefrontal cortex that has complex preferences about the future stored on it. ”

            In what sense is this true that is not equally true of a book?

          • Mary says:

            I didn’t say “personhood”; that’s a hopelessly slippery concept, and one I suspect with more legal than ethical significance.

            I said “state”, or “persistent state”,

            It would have been advisable to say so up front, considering you were responding to a comment about “personhood.” Then there wouldn’t have so much confusion created by not realizing you were going off on a complete tangent.

          • Nornagest says:

            Tangent? I was trying to outline an answer to your question (“under what definition of personhood…”).

            I could have added a paragraph or so of preamble about how ill-defined that word is, sure, but I didn’t think that necessary given that you were asking for a definition. The only reason anyone would do that is if they already thought it wasn’t defined well… unless, of course, it was pure rhetoric and they were actually playing “let’s find the nearest one-liner gotcha”.

            Stupid of me to expect anything but an adversarial reading in something within spitting distance of an abortion debate, I guess.

          • Mary says:

            You have said:

            Tangent? I was trying to outline an answer to your question (“under what definition of personhood…”).

            And you have said:

            I didn’t say “personhood”; that’s a hopelessly slippery concept, and one I suspect with more legal than ethical significance.

            There is no reasonable interpretation of these statements under which they can both be true. If you are trying to define it, not using the term is a trivial side point

            That is the sort of thing that encourages adversarial reading.

          • Chris Conner says:

            @onyomi in particular, and others in this subthread in general,

            No, your brain is not basically dead when you’re in non-REM sleep. You dream during NREM as well as REM sleep, and other neuronal activity is thought to be important for memory consolidation. If you think NREM sleep does you no more good than being dead, try going without it some time.

          • Nornagest says:

            There is no reasonable interpretation of these statements under which they can both be true.

            Oh joy, more gotchas.

            The reason “personhood” is a slippery term, that I don’t expect it to hash out to ethical significance on its own terms, etc., is that you can semi-plausibly ground it in a lot of things, many of which are inconsistent with each other. It’s kinda like saying “right action”, or “the World-Spirit”: a phrase that doesn’t have much meaning outside of the framework it’s embedded in. That leads to a lot of problems, but it also implies a lot of latitude in questions like “for what definition of personhood does such-and-such a property hold”. Actually, the question doesn’t make much sense without a lot of latitude.

            What I called persistent state above is one such definition, or at least part of one; from an ethical perspective I don’t think it’s the whole story for reasons I’ve gone into more detail on elsewhere.

            Am I making myself a little clearer now?

          • onyomi says:

            “If you think NREM sleep does you no more good than being dead, try going without it some time.”

            That is not what I said.

    • Ghatanathoah says:

      I think Scott is going for a Singerian definition of personhood, where being a person consists of having preferences about oneself, and about how one wants the future to go for oneself.

      A cow’s brain is too simple to have complex preferences about the future. So is a fetus’. But a human’s brain does have preferences. And it continues to have preferences, even when it is asleep, because preferences are stored in the brain. Otherwise you’d have completely different preferences every time you woke up. Preferences are like memories. Just because you’re not recalling your memories at this very moment doesn’t mean you don’t have them. Ditto for preferences.

      I seriously don’t get why people think that a sleeping person doesn’t have any preferences or desires. Is it because they aren’t currently thinking about them? By that logic it would be okay to steal someone’s car if they’re thinking about some topic other than cars at the moment. You still have preferences when you are asleep, the same way you still have memories when you aren’t currently recalling them.

      • Mary says:

        “And it continues to have preferences, even when it is asleep, because preferences are stored in the brain.”

        So what? I could store my preferences in my diary because otherwise I would forget overnight what I preferred to do the next day. That doesn’t make the diary a person, and neither do those “preferences” make the sleeping human a person if personhood is defined by preferences.

  44. 27chaos says:

    This made me laugh at loud at several points, it’s one of your funniest essays yet. I have been diagnosed with Asperger’s by a psychiatrist, by the way.

    Here’s a fun idea I had a couple months ago: people with autism spectrum disorder feel intense sensory stimulation, and experience the world much more vividly, and their internal experiences are more compelling and hold their attention more easily. Consequently, from the perspective of people with ASD, neurotypicals are practically real life p-zombies. I’d love to see Chalmers confronted with this argument.

    • LPSP says:

      That is a fascinating way of looking at it. I will admit that during my edgier teenage phase, and periods of depression/anger in my cuspal 20’s, I have felt/thought (you can’t draw a line when you’re in that state) that other people are somewhere between childish, animallian and really, really careless. In hindsight, the exact combination of traits for my internal monologue angled aligns neatly with a p-zombie – they just aren’t experiencing anything within. The idea of trying to live like them made me feel empty.

      Now I’m wondering who came up with p-zombies and how likely that he is autistic.

      • 578493 says:

        This discussion is interesting, but I don’t think p-zombiehood is the concept you’re looking for. A p-zombie is an entity that lacks qualia (subjective experience), but is exactly like a normal, qualia-having person in every externally-observable respect.* If we grant that p-zombies are possible, then for all each of us knows, anybody and everybody else could be one; by definition there can be no piece of evidence (observable from the outside) that makes p-zombiehood more or less likely in any particular case.

        [*Sometimes defined a bit less strictly, e.g. ‘behaviourally identical’ rather than identical in every observable way.]

        • LPSP says:

          I do get what you’re saying, but one has to ask how exactly do you test for p-Zombiehood? Intuitively, my answer would be to poke and prod for an original insight or glimmer of curiousity. You could argue that a p-zombie could fake that, and I would then argue that the hypothetical existence of p-zombies is unfalsifiable and therefore moot unless we change the definition slightly. Given that I like the term p-zombie, this strikes me as prudent.

          (also, *is the concept for which you’re looking)

          • Peter says:

            I thought that the whole point of p-zombiehood was that you couldn’t test for it; ex hypothesi they’re behaviourally indistinguishable from the rest of us. It’s a philosophical concept, not a scientific one, so falsifiability isn’t the thing.

            Daniel Dennett has great fun with this: see http://pp.kpnet.fi/seirioa/cdenn/unzombie.htm for example. His position is that p-zombies are literally inconceivable – when people think they’re hinking about a p-zombie, they aren’t, they’re always imagining some in-principle observable difference. Nevertheless he has a go at trying to imagine one properly. He ends up inventing things like a “stream of unconsciousness” – it’s like a stream of conciousness in all (directly[1] or indirectly) observable regards except that you’re not allowed to call it a “stream of consciousness” because that’s something that p-zombies aren’t allowed to have. (Oh wait, that wasn’t Dennett, that was Dave Chalmers, inventor of the p-zombie concept.)

            [1] Of course, there aren’t any. But if there were, it would still have to be indistinguishable.

          • Vaniver says:

            Intuitively, my answer would be to poke and prod for an original insight or glimmer of curiousity.

            You’re missing the point. A p-zombie and a normal person are exactly identical, in every way, except that an invisible, undetectable entity is listening in on the normal person, and not on the p-zombie.

            therefore moot unless we change the definition slightly. Given that I like the term p-zombie, this strikes me as prudent.

            Please do not try to redefine things in this way. A p-zombie specifically refers to something that is unfalsifiable, and “rescuing” the term by using it to refer to something falsifiable is instead destroying the usefulness of the term. Let it go, and find a label that other people will think refers to what you want to refer to.

          • Aegeus says:

            How about “pod person” instead of “p-zombie”? You want something that was intended to horrify, not something that was intended as a thought experiment to prove the existence of qualia.

          • LPSP says:

            Alright, I get it, leave the term alone. I mean, I see this as an opportunity to give an aesthetically pleasing term a massively less niche use, but that’s just me.

        • 27chaos says:

          For me, it’s just a fun metaphor. It doesn’t do much to resolve the debate by itself, but I feel like it gives a useful illustration of the materialist objection, because in the case of people with autism we can look at their brains and see that it matches the change in internal experience. This helps us transition from viewing p-zombies as a solely abstract argument to seeing implications that it might have. Chalmers seems to want to insist that whether p-zombies are metaphysically possible or impossible has no direct relevance to our own lives, but I think that’s incorrect and a very odd and pessimistic way for a philosopher to approach metaphysics.

          I also think the analogy might work in reverse, to give people a slightly better idea what having Asperger’s feels like.

        • Tom Richards says:

          I’m not sure. Certainly the general conception of p-zombie vs. experiencer is discrete and binary, but it doesn’t seem prima facie implausible to me that intensity of qualitative experience could be a continuous property, truncated at zero with p-zombies. It’s likely that actually having a good reason for adopting that belief would require a different kind of evidence to what 27chaos is thinking of, though – if indeed it’s capable of being evidenced at all.

      • Protagoras says:

        Having met David Chalmers, I can tell you that I rate the likelyhood of his being anywhere on the autism spectrum as extremely low.

        • Tom Richards says:

          I could be wrong, but from what I remember, while Chalmers advanced the most famous and seemingly robust form of the argument, he didn’t actually come up with the idea of p-zombies himself.

    • Melting Asphalt puts forth the argument that the qualities defining personhood for people with Asperger’s are different from those of neurotypicals:

      “Relative to ‘neurotypicals,’ Aspies seem to care much more about, and put much greater emphasis on, the criteria of integrity and use of reasons. They have a heightened sensitivity to these dimensions of personhood, and prickle more when others make contradictory statements, for example, or shrug off reasons in favor of “intuition.” On the other hand, Aspies seem to care much less about, and put far less emphasis on, the criteria of politeness, proper comportment, and the proper use of social emotions — owing, perhaps, to a dulled sensitivity.”

  45. Geoff says:

    Long(ish) time reader, first time commenter. I just wanted to note that, as a clinically diagnosed Aspie, (with comorbid anxiety, chronic depression and ADHD along with the usual smorgasbord of physiological symptoms to offset my 150 IQ) if there were a temporary cure like the Welbutrin and Vyvanse I take, I’d try it in a heartbeat. If there were a permanent cure, I’d mull it over for a couple days but most likely still take it. Having to take notes in a class and not being able to visualize logic circuits without drawing them out is a small price to pay relative to the drawbacks.

    Also, unrelated: Like the jab about giant nuclear missiles.

  46. Gauge says:

    “Vox: We’ve called autism a disease for decades. We were wrong.

    I have mixed feelings about this.”

    Well, unplug your nose. If you can get the BS whiff rippling off that Vox headline you need to siphon your sinuses.

  47. Ghatanathoah says:

    In regards to the whole “wants to cure autism, but doesn’t want to cure nerdiness” thing, I think a lot of the seeming contradiction goes away if you adopt the following principle: Problems caused by have different terminal values are acceptable.* Problems caused by having wrong instrumental values, or by inability to do things one wants to do, are not. I think this explains a lot of people’s moral intuitions about diversity.

    In the case of nerds, the primary cause of their suffering is having strange preferences that cause other people to mock and shun them. A secondary cause is disabilities, like being unable to read social cues. Nerds often have unusually good instrumental values compared with the rest of the population, which allows them to deal with their disabilities by throwing money at them.

    In the case of people with severe autism, the primary cause of their suffering is disability and bad instrumental values. They are often unable to do basic things to improve their life, and they often fail to recognize that improvement is necessary.

    If we follow the rule that problems caused by different terminal values are more acceptable (though obviously we should still try to prevent them if we can) than problems caused by disability or wrong terminal values, the intuition that we should keep nerds around, but cure low-functioning autistic people, makes sense. Nerds mostly suffer because of their terminal values, with a small amount of additional suffering due to disability. Low-functioning autistics suffer mainly because of their poor instrumental values and disability.

    • Gauge says:

      “In the case of nerds, the primary cause of their suffering is having strange preferences that cause other people to mock and shun them.”

      Nope, nerds real problem is that “The Big Bang Theory” isn’t funny any longer.

      • DrBeat says:

        Nerds always hated The Big Bang Theory.

        • Chalid says:

          I can attest that it had a large following among physics grad students at MIT which is one of the nerdiest populations anywhere.

        • Marc Whipple says:

          Spectrum reaction.

          I watch it. Occasionally the “nerd blackface” aspects of it disturb me to the point where I stop for a while. Then I start again.

          • Gbdub says:

            “Nerd blackface” is an interesting way to put it. Still, I occasionally find humor in it, and I suspect most nerds know at least one or two people for whom Sheldon is only a mild exaggeration. And also a Raj.

            But Wallowitz particularly annoys me. He’s supposed to be an engineer, but we don’t get any good engineer jokes. Instead, most of the “humor” comes from tired Jewish stereotypes and Howard’s lame attempts at “Game”.

          • Protagoras says:

            Yes, Wallowitz is terrible. But I’m in the “it has declined over time” camp. In particular, all the female regulars are terrible. Which is particularly frustrating as there have at times been interesting female characters, but the interesting ones haven’t been the ones to become regulars. I think the biggest issue is that for some reason none of the regular geeky women have much in the way of geeky hobbies, so they fall into a sort of tired women as the grown-ups/killjoys stereotype when they constantly criticize the hobbies of the men.

      • Bugmaster says:

        “Any longer” ? When was it ever ?

        • Garrett says:

          The first season had jokes which were sophisticated enough that I occasionally had to look them up to appreciate them.
          After that, things were dumbed down substantially.

  48. NN says:

    I’m still working out my full thoughts about this, but one thing here really stood out for me: comparing nerdiness with autism is flawed because while we’ve always known that nerdiness exists, we’ve only had a name for autism since 1938. It can be annoying how some autism rights groups attempt to diagnose all sorts of famous historical scientists and intellectuals with autism, but the fact remains that while a lot of them, maybe even most, weren’t undiagnosed autistics, it’s likely that some of them were, though we’ll never know for certain which ones. It’s even more probable that plenty of important figures that aren’t in the history books had some kind of undiagnosed autism.

    I’m on the autism spectrum (I was diagnosed with Asperger’s back when that was still a diagnosis). A lot of my family members have commented that my maternal grandfather was “difficult” in the same way that I am “difficult” at times. Given how studies consistently show autism to be in large part due to genetic factors, I find it very plausible that he was also on the autism spectrum, or at least autism adjacent.

    My maternal grandfather worked as an engineer for Andrew Higgins. You know the “Higgins boat” that was used in the D-Day landings, the one with the ramp at the front? My grandfather designed that boat. He got the idea for the ramp from a cigarette box, of all things. Yeah, maybe someone else could have come up with the same idea in his place, but (leaving aside the fact that we could say the same thing about every inventor to ever live) when the stakes are as high as they were back then, even a small delay or mistake can make a huge difference. Even if my grandfather’s work only hastened the end of WWII by a month, it still probably saved millions of lives.*

    How does that impact your calculations?

    * This is without going into full alternate history mode and wondering what would have happened if, say, the D-Day landings hadn’t gone as well and so the Soviets conquered more of Europe, resulting in the Iron Curtain ending up further West than in OTL and who knows what changes to how the Cold War played out…

    • Murphy says:

      Only counting your grandfather seems to be a poor way to approach it, you’d need to also include some mildly autistic german engineers. Was the guy who designed the german fuel cans autistic? Probably not but if he was then you might be able to attribute the war lasting weeks less if he’d never existed.

      Also your grandfather doesn’t sound profoundly disabled even if he was autistic.

      • NN says:

        The point I’m trying to get across is that we can’t say these things for sure. Scott seems to argue that Temple Grandin is the only autistic person he’s heard of that has ever done anything important, whereas lots of important scientists and inventors were nerds, therefore nerds have more of a reason to exist. I’m trying to make the point that it’s more complicated than that because they were surely a lot of autistic people around long before we had a diagnosis for it.

        As for the “what about German engineers?” question, well, that would apply even more to the subject of nerdiness, since unlike autism we can say for sure that plenty of historical people responsible for bad things would fit our current definition of “nerd.”

        Also your grandfather doesn’t sound profoundly disabled even if he was autistic.

        No he wasn’t. I’m not. Lots of actual professionally diagnosed autistic people aren’t.

        It would be great if profoundly disabling autism turns out be distinctive from “mild autism” on a neurological and genetic level. But in the real world, things often don’t work out so cleanly.

        • Gbdub says:

          But the flip side is – how many people with profoundly disabling autism could have made meaningful contributions like your grandfather if a cure existed? What would those contributions have been? How many potential inventions are trapped in the skulls of people beating them against the wall because they can’t communicate or control their sensations?

          • NN says:

            But the flip side is – how many people with profoundly disabling autism could have made meaningful contributions like your grandfather if a cure existed? What would those contributions have been? How many potential inventions are trapped in the skulls of people beating them against the wall because they can’t communicate or control their sensations?

            1) I think this question is effectively asking “what if different non-autistic people had been born in the place of severely disabled autistic people?” Whatever your position on whether curing a high functioning autistic person would turn them into a different person, I find it hard to deny that the life experiences of being profoundly disabled by autism and the life experiences of being born “neurotypical” are so different as to be utterly incomparable.

            2) This assumes that curing those people of autism would turn them into neurotypical and fully functioning people in the first place. Scott writes in his post that patients with autism have a high comorbidity with other psychiatric conditions, including things like severe epilepsy. So a lot of the severely disabled patients might still have serious problems even if you could get rid of their autism.

            3) Since the original context was responding to Scott’s comparison of nerdiness with autism, I think you could just as easily say, “yes, but how many more people could made significant contributions if that hadn’t faced so many difficulties in life on account of being nerds?”

          • Gbdub says:

            2) really seems like avoiding the issue. We’re talking 1 weird trick magic cure here, that will make you as neurotypical as you want to be. “Well, a cure wouldn’t really work anyway” is a very different argument from “looking for a cure is a Bad Thing, because trying to ‘cure’ autism is Wrong”.

            If anything, the real world seems more likely to correct the comorbid stuff first anyway.

            3) Sure, I’ll bite that bullet. The point is that you can’t simply say “curing autism is wrong, because some people with autism make invaluable contributions”. There’s a trade off.

            And anyway I fail to see why it has to be such a dichotomy. “Curing” the nastiest version of a thing doesn’t mean we have to force people to stop showing any minor, possibly positive traits related to the thing.

            Heck, at the point we’re that good at genetic engineering, you probably won’t have to choose between “logically ordered thinking” and “effective social skills” anyway because we’ll know how to have both.

  49. Anonymous says:

    Okay, having looked into this more, I have a new question. Assume the autism rights people are correct, and that a child with autism who has had his carers stop his routine, has been very upset the first few times but has gradually settled down and now appears content with not having that routine, is in fact suffering inside. He shows all the outward symptoms of being happy and content but this is a cover-up, and he is still incredibly stressed and clamoring for his routine inside.

    Why should we assume this is true of this particular situation where an autistic child who cannot communicate appears happy, but not all others? For example, why should we assume he liked his routine to begin with? He was happy and content during it, but maybe that was a cover up too? Maybe we inadvertently did something to make him pretend to be happy there too?

    Is there some way we can distinguish between an autistic person who is actually content and one who is only pretending to be content? And if so why weren’t we doing that already to determine whether an autistic person who has had his routine disrupted and appears to be content is or isn’t really content?

  50. Alex Trouble says:

    In regard to your first footnote, what’s the actual size of these populations? How many autistic adults are institutionalized in the US, for example?

  51. baconbacon says:

    “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.”

    This is just a footnote, but it is the most consistent flaw in Scott’s thinking is the line here

    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.”

    The US government has no right to think this as the history of US programs to pull people out of poverty have limited to no evidence of effectiveness.

    • Alex Trouble says:

      “The US government has no right to think this as the history of US programs to pull people out of poverty have limited to no evidence of effectiveness.”

      For sure, though it could instead say “we could reduce tax rates on poor people with 1.5 million dollars per patient.”

    • Scott Alexander says:

      As I’ve said before, one consistent result in development economics is that giving people money causes them to in fact have the money you just gave them.

      Assume people need money for 50 years, from the time they leave home at 15 – 20 to the time social security kicks in. If a family’s currently making $15,000 and they need $25,000 to be above the poverty line, then $10,000 x 50 years = $500,000. So $1.5 million could lift three families out of poverty without a whole lot of ways for the plan to go wrong.

      • Jon Gunnarsson says:

        This approach works just fine for a charity like GiveDirectly, since they only give money to a small proportion of the poor people in a particular country, selected at random, so GiveDirectly doesn’t do much to influence the incentives that people face. The US government isn’t going to take that approach. They would instead have some criterion based on which you qualify for receiving extra money, and if you fit the criteria, you get the money without having to go through some lottery.

        Yes, the people you give money to will be that much richer, but this programme will also generate rent-seeking behaviour. If you get $X for being poor by some particular definition, then people will tend to be willing to spend an amount of effort equivalent to up to $X in order to qualify. For example people might choose to work fewer hours, have more children than they otherwise would, or decide whether or not to marry based on what would qualify them for this payment, rather than what their true preferences are.

        • Scott Alexander says:

          Yes, this is why I support basic income, so you get the money regardless and there’s no behavior that helps you get more or less of it.

          • Jon Gunnarsson says:

            Fair enough, but the topic above was giving money to poor families. If instead you want to use the money saved on caring for autistic people to help fund the universal basic income, you’re not lifting three families out of poverty, you’re instead giving dozens of families of all income levels a few hundred dollars extra per year (according to the study you linked in that footnote, 1.1% of the US population outside prisons and military institutions are on the autism spectrum). No mean feat, but it’s not lifting anyone out of poverty on its own.

            It seems to me like you want to have your cake and eat it too—you want to claim the benefits of selecting needy recipients through means-testing, while simultaneously avoiding any distortion of incentives that accompanies means-testing.

          • Anonymous says:

            There are still behavior changes that people will probably make. Some people on low incomes will decide it’s not worth working and that more leisure time and less money is a better choice. Other people on higher incomes will decide it’s not worth working as much or as hard when what they get in return from doing so is less than it would be in the absence of the taxes required for the basic income.

      • baconbacon says:

        This is a reply to both you and to Alex Trouble above.

        If I have super strength with little ability to control it such that I break every hand I shake, then I should not shake hands (at least until I can perform some related task and demonstrate a related ability). The fact that it is possible for a person with super strength to shake hands without breaking them does not lend itself to my specific case.

        The US government is not a hypothetical institution. Stating that the current US government should consider itself to have the “right” (insert obligation or whatever synonym) is to gloss over the fact that it is a complicated system that makes simple solutions extraordinarily difficult to implement. A person/institution that cannot demonstrate the ability to do a thing well can never claim a right or an obligation to do it in this context.

        This part just as a reply to Scott:

        “As I’ve said before, one consistent result in development economics is that giving people money causes them to in fact have the money you just gave them.”

        If all that mattered in economics was looking at one half of the equation then it would be the easiest fricking thing in the universe to figure out. Instead of looking at a very narrow view of the history of economic development if you took a broad view your picture would be very different because that broad view would necessarily include the realization that at some point (and actually at many points) development has happened without giving X to group Y, but instead with poor people developing into rich (richer, less poor) people without such transfers.

  52. alexp says:

    “…nerds can claim…all the good sci-fi/fantasy writers.”

    And all the terrible ones.

  53. Jiro says:

    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.”

    This suggests that the government should not pay for taking care of people with any self-inflicted injury, including lung cancer from cigarette smoking, diseases caused by obesity, mountain climbing accidents, etc.

    • Murphy says:

      Not treating self-inflicted harm is different to not providing extra care to people who refuse particular treatment.

      If you refuse to get in a bus during an evacuation the government isn’t required to send a limo.

      If you turn down a blood donation due to being a Mormon to treat a condition related to a failing organ the government doesn’t automatically move you higher on the list for donor organs.

      • Jiro says:

        The treatment that is being declined is “don’t self-inflict harm”. Fail to accept this treatment and you will require extra care.

  54. Free Range Platypus says:

    The striking thing about this is that almost everyone, even Scott to an extent, is tying themselves into knots treating this as an abstract philosophical question when it’s an obvious practical one.

    Autism can be diagnosed with reasonable accuracy by looking for characteristic copy number variants* in a buccal swab. In fact my lab is in the same building as a company doing just that. At present, they’re running a trial to see if their test can predict more fine-grained differences in functioning.

    So we have a condition that we will soon be able to screen for before birth, one that is a clear negative for the majority of those who develop it and which burdens their families and society. What is there to debate? Just celebrate and chalk up another win for medical science.

    *Like Downs Syndrome being caused by trisomy 21 but less obvious.

    • Anonymous regular reader says:

      > one that… burdens … society.

      Even if this is true, it holds only for the median autistic child, not the mean one.

    • Peter says:

      Citation?

      • Free Range Platypus says:
        • Phamos says:

          So “reasonable accuracy” now means 7% of autistic kids referred for genetic testing had abnormal duplications? 7%? Scientists have a loooooong way to go on this front. If the people in your building are positioning their business as a definitive genetic diagnostic lab, they’re frauds. (For the record, my son, who is unquestionably autistic, has had genetic testing done and had no abnormal duplications or deletions.)

    • Scott Alexander says:

      I won’t say I call BS, but autism is multifactorial enough that diagnosing autism genetically seems like as much of a challenge as diagnosing schizophrenia or predicting IQ the same way. If we are even kind of able to do this I will have to increase my estimate of how advanced biotech is by a huge leap. What sensitivity and specificity do these genetic tests have?

      • Peter says:

        Better still – ask for positive predictive value (“precision” for machine learning people) for the general population. Getting a decent PPV for a convenience sample of cases and controls is one thing, getting a decent PPV for the general population for a rare condition is another.

        (Making a test to diagnose autism in the general population with 98-99% accuracy (in the relevant technical sense of the term) is easy – just say that everyone is neurotypical.)

      • Free Range Platypus says:

        If you’re willing to wait a few hours until I get back home, I’ve got some literature the guy referred me to in a folder under my desk.

        If you’re not, the company is Lineagen. Their website is very poorly designed and doesn’t look like it’s been updated for a while, but you can actually go get a prescription to use their microarrays so at some point they must have published something clinical.

        Anyway, I’m not a medical doctor: my standards for a good test are less stringent than yours, at least judging by our reactions to the suicide biomarkers study. I can’t guarantee it will satisfy you.

        • US says:

          [This should have been a response to Scott’s comment, not to Free Range Platypus’. Oh well…]

          I agree with Scott. Some related information of interest:

          “Syndromic ASD [as opposed to ‘non-syndromic/idiopathic ASD’] includes identifiable autism syndromes with known genetic causes, such as tuberous sclerosis complex, Fragile- X syndrome, Rett syndrome, and Smith-Magenis syndrome. […] 15%–20 % of cases of ASD are now linked to genetic or chromosomal abnormalities.”

          I.e., most cases are not linked to specific genetic/chromosomal abnormalities. It’s a bit more complicated than that, though:

          “In research, the distinction between syndromic and non-syndromic cases
          is beginning to blur, in that genes involved in non-syndromic cases are being
          found to lie within abnormal chromosomes or chromosomal regions that
          result in syndromic cases. The identification of ASD-relevant genes and
          copy number variation or CNV has demonstrated that they are distributed
          across the genome, which has explained why ASD has long been associated
          with a variety of chromosomal syndromes (“nonspecifically”) rather than
          with a few chromosomes consistently.”

          Actually it’s quite a bit more complicated than that:

          “Variations in clinical severity among ASD cases are not valid indices of differences in pathophysiology or etiology.”

          “part of the difficulty in linking the genetic, neurobiological, and behavioral components of ASD is the large phenotype-genotype variability.”

          All of the above quotes are from the book Autism Spectrum Disorder, by Lubetsky et al.

          You also have the additional problem when trying to link syndromic and non-syndromic cases to learn about the genetic links that the clinical symptoms observed in the syndromic cases vary and aren’t all of them related only to their autism (even with a very specific mutation causally linked to autism you don’t have full penetrance, and you always have confounders present – this makes it harder e.g. to correlate specific mutations with specific symptoms).

          One CNV test is not going to give you decent distinctions between cases and non-cases and it’ll definitely lack sensitivity. If those guys say they have 1 test which can be used for diagnostic identification of all the different types of autistics, well…

          [Update: Had a brief look at the paper linked above. Sensitivity is, as expected, low].

  55. Anonymous regular reader says:

    Scott,

    Someone who has a “good” form of autism (genius IQ, minor sensory issues) might read your article with fear and worry that he should update his beliefs to increase the estimate of his developing some of the negative conditions you describe. To save this person (who might be a child who loves your blog and if told by a parent to not read this blog anymore or to skip this one post would want to read it 1,000 more) needless anxiety you should consider writing, “once someone has reached age X, if they don’t have these negative traits they shouldn’t think they are likely to develop them just because they were once diagnosed with autism. “

    • US says:

      Would such an individual get a diagnosis in the first place? Do you have someone specific in mind, or is it a ‘general question’?

      Sensory issues combined with high IQ without other autism traits – social deficits of various kinds and restricted, repetitive patterns of behavior should not yield an autism diagnosis. You need social deficits to satisfy the diagnostic criteria and you need restricted, repetitive patterns of behaviour. If someone with high IQ and minor sensory issues not particularly bothered with them got a diagnosis, I’d be tempted to seriously consider the possibility that it was a misdiagnosis.

      • Anonymous regular reader says:

        A specific person who was diagnosed as a young child, who saw lots of experts as a young child as part of his or her early intervention and they all agreed that this child has autism. Having a very high IQ can help you compensate for social deficits especially if you have gotten lots of feedback from adults on social issues since before you were three. The patterns of repetitive behavior now translate into being very into some activity like origami, chess or Minecraft for a few months.

        • US says:

          I see. Then there’s no good reason to question the diagnosis. I apologize if I seemed harsh/skeptical, I just thought that given that the only symptoms you reported were ‘minor sensory issues’ the question of a misdiagnosis should at least be considered; there’s a lot more to autism than, say, noise sensitivity.

          “Having a very high IQ can help you compensate for social deficits especially if you have gotten lots of feedback from adults on social issues since before you were three.”

          I’m aware of this.. I personally got diagnosed late, in early adulthood, because it was only at that point that I really became unable to compensate any longer. This sort of development is not *that* uncommon in the context of non-syndromic cases.

          My own experience makes me cautious about adding a statement like the one you had in mind (‘“once someone has reached age X, if they don’t have these negative traits they shouldn’t think they are likely to develop them just because they were once diagnosed with autism“’), at least given some interpretations of it. It sort of depends upon the ‘trait’, I think – if you’ve never once woken up screaming during your 22 years of life (or whatever), you probably aren’t going to start doing that tomorrow. Seizure-disorders are more common in children than in adults.

          But autistic symptomatology may change over time, and things can get both better and worse with time. A few relevant observations on that topic (from the book Adolescents and Adults with Autism Spectrum Disorders):

          “Almost all studies that have examined developmental trajectories for individuals with ASDs show that these individuals exhibit reductions in autistic symptoms over time […] Symptoms of ASD tend to diminish both in severity and number. The most improvement has usually been recorded for participants with IQ scores in the normal range and the least severe symptom presentations at their initial evaluation […] Published reports also indicate that there are subgroups of individuals with ASD who experience marked change in the course of their development at some point, either as deterioration or dramatic improvement. […] This phenomenon was […] noted in a Japanese sample of 201 young adults, although marked improvement was also described […]. Roughly one-third of this sample experienced a marked deterioration in behavior, most often occurring after age 10. The change occurred after age 20 in six cases. Declines were characterized by specific skill regressions or by increases in hyperactivity, aggression, destructiveness, obsessive behavior, or stereotyped behaviors. Notable improvements in the developmental course occurred in 43 % of the sample […] Improvements occurred between the ages of 10 and 15 years for most participants. No predictable antecedents to changes in the developmental course have been noted in previous studies. […] Significant improvements in verbal communication abilities have been reported on the ADI-R, although findings related to nonverbal communication have been mixed.”

          The somewhat dynamic nature of the condition complicates these things. Especially in the context of an individual with a history of being able to compensate well, that individual may well still be at risk of becoming unable to compensate sufficiently to handle activities of daily living later on – “adults often only appear on the services ‘radar’ when they reach crisis point” (Denise Edwards, Providing practical support for people with autism spectrum disorder – supported living in the community). Life transitions which a neurotypical might have no trouble dealing with might well pose significant difficulties for an autistic, even if said individual has had a relatively stable and okay life for a long time before that transition happened. Stuff can be (should be?) done to minimize risk, but you’re not going to address the risks if you’re not going to look at which bad outcomes might happen in case you don’t.

          • Anonymous regular reader says:

            Thanks for this information, and no need to apologize. I wonder if getting lots of early intervention makes future deterioration more likely because current behavior is somewhat artificial, or less likely because you have learned lifelong coping skills? Is early intervention analogous to pulling on a rubber band or bending metal?

  56. Anonymous says:

    Re: the striking difference between autism as insult on the internet versus what autistic people are actually like in real life. Agreed – the former seems to be used to mean the same thing as when words like neurotic, OCD, etc. are used as insults: someone who is overly obsessed about things that the person giving the insult thinks are not worth caring about.

    Re: the ‘one magic cure’. I think you are overstating the problem with this. So far as I can tell, there really is something a bit like a magic cure, although nowhere near that extreme – more like a set of techniques and way of responding to autistic people (specifically children, I’m not sure if this applies to adults) that does help them somewhat, beyond just being nice to them. My information on this comes from my partner who works with children with autism. From what she’s told me, lots of parents tend towards giving their child whatever they want, but doing the opposite of this – making them do things they don’t want – is in many ways more beneficial to the child’s long-term wellbeing.

    To elaborate on that, ways you can help these children long-term are a) making them more capable of dealing with their surroundings, upset by fewer things, etc., b) helping them become more independent, a large part of which is helping them become more able to communicate. Doing the former seems like it ought to be guaranteed to provide a benefit to someone. Either the people caring for the child no longer have to expend as much effort modifying their surroundings to remove upsetting things, or (if it was not possible to do that before) the child will be upset by fewer things they encounter that they were previously upset by and be calm more of the time as a result. For the latter, helping the child become more independent and better able to communicate should give them a greater ability to satisfy their needs, both by doing things for themself and by asking carers for things.

    From what I hear from my partner, responding to the child by doing exactly what they want is unhelpful to both of these goals. Following their routine they demand often causes them to become more dependent on that routine, whereas ignoring it might cause tears and stress for the child the first few times but longer-term means the child is no longer dependent on that routine and is comfortable (for example) going different routes round the supermarket rather than the same way every time. Giving the child what they want satisfies their preference now but makes them more dependent on help; making them do it without help means they gradually learn they are able to do it themself.

    I have no doubt that there are situations in which giving an autistic person what they want is a better option. But at least within the scope I am familiar with – children and parents and schools – it seems like the trend is in the opposite direction, that catering to every whim of autistic children is unhelpful not helpful.

    Re: the Vox article. I think this is mostly just posturing. It is always tempting, especially if your sympathies lean left, to say that we should do whatever nice-sounding things we can afford. Making an entirely separate world for each autistic child sounds nice; making them more able to cope in our world sounds mean. So one great source of, say, ideas for Vox articles, is to think of a nice-sounding thing we could do and then say we should do it. Whether or not the nice-sounding thing is actually nice, or whether it is a worse way of doing things than the mean-sounding alternative, does not need to come into it.

    Following on from this, I think the claim by some parents that there is nothing wrong with autism and they wouldn’t want their kid to not be autistic is an obvious lie. These parents send their child to a special school to make that kid’s behavior more like that of a neurotypical kid – less stressed, less dependent on routines, better able to communicate. No parent of a child with autism complains to the school that their child is becoming too independent, is acting too neurotypical, and can they please get the kid to speak less and scream and flap more. So the idea that there is some limit they would like their child to reach – that they should get to a certain level of ability BUT NO FURTHER – seems to me to be astonishingly unlikely. I think the objection is more to the concept of a cure – the idea that their child will go to bed one person and wake up another. If it were phrased as a new technique, that would help their kid become more and more able until they were at the level of a neurotypical person, and would do this not overnight but over a period of a few years, I doubt any would object. ‘Cure’, on the other hand, reads as monstrous uncaring scientists trying to take their child away.

    Finally – that claim that an autistic person costs over their life three times what an average neurotypical person makes over their life surprises me. Will a year of care for an autistic person cost more than a year of care for a neurotypical child? If so, why? If not, do you really mean to say that it costs three years of income to look after a child for one year? How do people afford to have children without being reduced to living in poverty?

    • Murphy says:

      An infant only requires 24/7 care for less than 2 or 4 years. They’re small and unlikely to injure anyone and generally absorb the full resources of 2 adults who live with them for that time. After this they still need care but it drops off as they grow to be able to care for themselves more and more.

      Compare this to an adult who needs 24/7 care who may be violent.

      This lasts a lifetime, 3rd party carers aren’t going to live with them so in order for someone to be there all the time you need 3 adult people working full time on 8 hour shifts each, 4 or more working full time to account for weekends and holiday. (depends how much care the person needs)

      If the person is violent then scale that up far more since they may damage people causing another lifetime of costs and they likely need more than 1 carer at any particular time to make sure nobody gets murdered.

      Caring for people long term is stunningly expensive, especially if they’re violent and physically strong.

    • Patrick Spens says:

      >Finally – that claim that an autistic person costs over their life three times what an average neurotypical person makes over their life surprises me.

      It’s not three times what they make, it’s three times what they pay in taxes.

      >Will a year of care for an autistic person cost more than a year of care for a neurotypical child? If so, why?

      Depending on the challenges they face, absolutely. I mean, obviously there are some autistic people, who need very little support, but as soon as people move into group homes/institutions things become real expensive, real quick. Take an optimistic* situation, where you can have a 3 to 1 client to staff ratio, and pay the staff minimum wage (where I am). Ignoring payroll taxes, workers comp, vacation and sick days, holiday pay, and everything else but the hourly wage of the staff, it would cost $32,210 per client per year.

      Then you have the cost of housing, food and clothing and the cost of any entertainments. You’ve got Doctor’s visits, and medications, and therapists/behavioural specialists. You’ve got the cost of replacing any vandalism, and any time the police/ambulance get called. And you need to pay for the bureaucracy that makes all that happen And everything I’ve heard says that group homes are cheaper than institutions. Like, when I saw that $1.5 million figure, and it seemed low to me.

      >How do people afford to have children without being reduced to living in poverty?

      Child care is free as long as you provide it yourself and don’t take time off work to do it (and public schools exist).

      *This is optimistic in costs sense, not in a “is actually a good idea that people should do” sense.

    • Yes, caring for an autistic person costs more than caring for a neurotypical one.

      Let’s follow a neurotypical and autistic child through life:
      First four years: parents care for them. Exact same cost for each child.
      5-10: Neurotypical kid goes to school; incurs normal schooling costs. Autistic kid goes to school, but also requires a full-time aid and weekly PT, OT, and communication classes, plus constant record-keeping. Autistic kid costs 3x as neurotypical kid. After school, both kids are cared for by a parent.
      10-18: Neurotypical kid goes to school, takes care of themselves after school while both parents works full-time. Autistic kid still requires full-time aid while at school + specialists + extra help now that they are too large to easily restrain if they start having an episode. After school, autistic kid still requires full-time parental care, so caregiving parent cannot work, and may also need extra help now that the child is bigger.
      18+: Neurotypical kid gets job, makes money. Autistic child moves into group home where full-time staff takes care of them.

    • Anonymous says:

      To the three people who have replied: I might have underestimated the increased cost for looking after an autistic child versus a neurotypical child. Although EvolutionistX, I was only comparing year by year. Obviously an autistic person needs care for their whole life, but I was taking that into account. Also, Murphy, if an infant really did absorb the full resources of 2 adults who live with them for that time, that would mean those adults are spending nothing on themselves, or any other children they have, which obviously isn’t the case for almost any parents.

      I wish I hadn’t added that last part of my post now, though – it’s the point I had the least interest in and yet it’s the only thing that has gotten replies.

      • Murphy says:

        Ok then.

        “From what I hear from my partner, responding to the child by doing exactly what they want is unhelpful to both of these goals. Following their routine they demand often causes them to become more dependent on that routine, whereas ignoring it might cause tears and stress for the child the first few times but longer-term means the child is no longer dependent on that routine and is comfortable (for example) going different routes round the supermarket rather than the same way every time. Giving the child what they want satisfies their preference now but makes them more dependent on help; making them do it without help means they gradually learn they are able to do it themself.”

        Right. This is so utterly wrong that if you’re a teacher or child carer you should stay far away from autistic children.

        Autistic children are not normal children. You’re talking about it like it’s a dominance game that you feel you have to win or a simple preference like with a normal child who’s a little fussy but what it means is that you’d make the kind of horrific mistakes that many many utterly inept teachers make with autistic children while trying to pretend that they’re not autistic.

        Autistic children aren’t helped by being forced out of their routine any more than children with no legs are helped by some good-natured person tipping them out of their wheelchair and cheerfully telling them to run along and play with the other kids.

        • Marc Whipple says:

          And here we go with the spectrum condition. And also individual variation. And don’t-take-every-argument-to-silly-extremism.

          My daughter functions MUCH better in society than most autistic children at her level of disability (heck, she functions better in society than a lot of the little buggers who are allegedly neurotypical.) This is not just my observation, this is the observation of therapists and school personnel.

          The reason for this is that we know the difference between her acting like any other kid who needs discipline, and her acting because her autism is making it impossible for her to act any other way. And we have worked hard (by we I mostly mean my wife who is her primary caregiver) to force her – yes, I said force – her to learn to deal with situations as best she can.

          If she had her druthers, we would not ever go anywhere except to a place where she could get things she liked to eat, and then we would get the things and come right home. This is unacceptable, both for us and for her. So, for instance, we take her to a weekly comic-book discussion group, where she sits to one side and plays with her iPad or her Game Boy. She is not allowed to bother us with random observations or demands to leave, though we do tell her when we’re leaving and we stick to that. She would obviously prefer not to go but she does not appear to be suffering dreadfully. (She’s verbal enough that she can communicate this.)

          We would not get even that tiny little break, and she would not have learned to be patient in places like doctor’s offices and the store and other places where she has to go, if we were not willing to push her limits and help her expand them. So the idea that any such actions are “utterly wrong” and “dominance games” is rubbish.

          That being said, when she gets into a mental state where she can’t stop repeating things at a very high volume and/or making distressing noises, telling her to be quiet, threatening to send her to her room, trying to punish her for it, would be utterly wrong, because it will not work, because she is not in control of her actions. We might be able to condition her into not making noise, but it would require positive punishments in the range of “serious-child-abuse” to “aggravated battery.” Nothing less would work and frankly, I don’t even think that would work.

          So if that makes me a monster, pass me the t-shirt. I have no intention of changing my behavior, and I don’t think it would be good for my daughter if I did. If you think you can raise her better, I could use a vacation and my wife could really use a vacation. Let me know.

          • Tom West says:

            Indeed, I think parenting almost any child successfully requires discriminating between what they don’t want to do and what they can’t do.

            I still feel guilty two decades later for those occasional times when I failed to recognize the difference until well after the fact.

  57. Held in Escrow says:

    I can’t comment on this from an autistic perspective, but from a different type of neurological disability; I’ve got the OCD. It’s a mild to moderate case which has led to severe reoccurring anxiety and depression issues. I’ve had break downs in public because I could touch the stones on a bridge just the right way. I’m so damn pro-cure I consider it somewhat offensive that people would actively deny one were we to know a roadmap to its existence.

    Now, I can understand from a budgeting standpoint why people would prefer to focus elsewhere when it comes to finding a cure for autism; it’s a super difficult problem with no guarantee of success while we still have plenty of low hanging fruit to pluck. But from a moral standpoint the idea that we shouldn’t have access to a cure is fairly repugnant to me

  58. “There are disability advocates who also raise objections to curing, e.g., deafness”

    Yeah, as I was reading this discussion I realized that people with Asperger’s and HFAs are insisting that autism is the new deaf.

    There are a variety of outcomes that, if parents were ever able to test for it, would disappear or become far less prevalent. If, in fact, homosexuality is genetically identifiable, add it to the list along with deafness, autism, Downs syndrome, and a few others I’m probably not thinking of.

  59. Emily says:

    Does anyone have thoughts about the costs/benefits of consulting mental health professionals about kids who clearly have some sensory integration issues and possibly some social issues but are otherwise normal? Are there any disadvantages to having the diagnosis? (For instance, you might feel stigmatized.) Are there intervention benefits/are they worth it?

    • Stefan Drinic says:

      We had some people in the previous thread taking up NRx positions to such a high degree that people figured they just had to be trolls. Are you one of said people doing the reverse now?

      [Edit: post is in wrong position, see below]

      • Emily says:

        Whoah, not even remotely. Liking math and trains and having some sensory issues runs in my family but no one ever saw anyone about it and everyone turned out ok. I’m wondering if my kid manifests the same stuff whether we should reconsider that strategy.

        • Whatever Happened To Anonymous says:

          My guess is that the post was meant to Emp rather than yourself, and was just misplaced.

          • Emily says:

            Oh, of course! Thanks. I was trying to figure out what I said that was so odd.

          • Stefan Drinic says:

            Yeah, he’s got it right. I feel a little sillier now than I already did, replying to that post in the first place.

            My bad!

    • Justin says:

      Anecdata isn’t data, but in my experience as someone with an early adulthood diagnosis, having social issues with no known cause was a hell of a lot more stigmatizing in literally every context I can think of (home, school, socialaly, extended family) than having a diagnosis could have possibly been.

    • US says:

      There are upsides and downsides to both and I don’t think you can make a general rule about those things which applies to everyone; it all comes down to the specifics, and not all of those specifics relate to stuff like e.g. severity of symptoms. For example some places have a lot more support mechanisms available than other places do, financing mechanisms (copay) presumably vary, etc.

      There’s in my opinion poor evidence that the behavioural interventions on offer to children ‘work’, for some reasonable definition of ‘work’ – one example quote (from the book Autism Spectrum Disorder, by Lubetsky et al.):

      “Over the years there have been many [behavioural] interventions developed for young children with ASD [autism spectrum disorder]. Thus far, research has not demonstrated that any particular intervention approach is better than the others. […] The amount of empirical support for different treatment approaches varies significantly. However, in general, more empirical support is needed for all approaches, and studies comparing the efficacy and effectiveness of different approaches are sorely lacking. […] many community-based programs may offer eclectic approaches combining elements of various types of interventions within a single program. Although we are beginning to understand better the types of approaches that seem to be successful for young children with autism and their families, we really have no way of knowing the extent to which eclectic, community-based approaches are successful.”

      I should note that I’m substantially more skeptical of the research than are the authors of that chapter, and you can actually to some extent consider the above comments to come from ‘the side in favor of behavioural interventions’. I’m not sure all of it is actually useless and some of it you sort of figure ‘ought to work’. But the evidence is not great. Most studies on behavioural interventions are severely underpowered, to the point where I’d say that if you’ve asked a few random autistics about their experiences you might well know as much as you perhaps would learn from some of the formal studies (for example the authors of the book quoted above were quite excited when they reported the results of a longitudinal study involving 6 individuals – this was apparently one of the better studies). Here’s another quote from a different book (Adolescents and Adults with Autism Spectrum Disorders, by Volkmar, Reichow & McPartland), illustrating that the state of the evidence in the context of adult interventions are incidentally even worse (seems relevant in a discussion where talk of ‘cures’ of adults with the condition pop up – if a behavioural intervention is ‘the answer’, then we’ll probably have to wait a while for that cure…):

      “While evidence is accumulating regarding the benefits of psychosocial interventions for adults with ASD, there have been no systematic reviews or meta-analyses conducted to summarize the cumulative evidence base for these approaches. Therefore, we conducted a systematic review to examine the evidence base of psychosocial interventions for adults with ASD […] An extensive literature search was conducted in order to locate published studies documenting interventions for adults with ASD […] These searches revealed 1,217 published reports. Additionally, references of relevant studies were examined for additional studies to be included in this research. […] From these abstract searches, studies were then examined and included in this review if they (1) were conducted using a single case study, noncontrolled trial, non-randomized controlled trial, or RCT design that reported pretest and post-test data, (2) reported quantitative findings, (3) included participants ages 18 and older, and (4) included participants with ASD. In total, 13 studies assessing psychosocial interventions for adults with ASD were found. […] The included studies were diverse in their methodologies and represented numerous categories of interventions. A total of five were single case studies, four were RCTs, three were non-randomized controlled trials, and one was an uncontrolled pre–post trial. Six studies evaluated the efficacy of social cognition training, five studies evaluated the efficacy of applied behavior analysis (ABA) techniques, and two studies evaluated the efficacy of other types of communitybased interventions. […] All of the included ABA studies were single case studies. […] All ABA studies reported positive benefits of treatment, although the maintenance of this benefit varied between studies. Effect size was not reported for the ABA studies, as findings were based on a single subject. […] As a whole, the studies identified had modest sample sizes, with the greatest including 71 participants and over three-quarters of studies having less than 20 participants.”

      “there are significant limitations to the current evidence base. While we conducted an extensive search of the literature available on psychosocial interventions for adults with ASD since 1950, only 13 studies were found. Due to the small number of studies, we were unable to conduct a meta-analysis of the adult ASD literature. As a consequence, clear estimates of effect size for different types of psychosocial interventions are not available. Effect sizes should also be interpreted with caution, especially for studies with small sample sizes, which comprised the majority of studies. The incongruent nature of outcome measures used in some of the included studies also indicate that the reader should take caution before generalizing the results of included studies. For instance, García-Villamisar & Hughes (2007) used cognitive functioning outcomes, such as the Stockings of Cambridge and Big Circle/Little Circle tasks, to measure the effectiveness of a supported employment program but did not report outcome data on the number of adults with ASD who were employed as a result of the program.”

      Pharmacological treatment options are a bit harder to evaluate and I don’t want to spend time on that topic.

      Autistics are more likely to be bullied, but whether a formal diagnosis helps or hurts in that respect is probably quite variable.

      Of course my skepticism is far from universal – there are people who would disagree, here’s for example what the AAP has to say, based on the same (poor) evidence I talk about above: “The American Academy of Pediatrics recommends that if a child is showing signs of ASD, the pediatrician should refer the child to early intervention services so that intervention can commence on the basis of a delay even before a diagnosis of ASD is made, especially since there are often long delays in many communities in scheduling diagnostic evaluations for ASD. […] The American Academy of Pediatrics recommends that young children with autism receive at least 25 hours of intervention per week, 12 months of the year.” (Lubetsky et al., chapter 7).

      I could add my own thoughts about whether or not I think it would have benefited me to have got a diagnosis at an earlier point in time than I actually did, but I don’t think much is gained by speculation of that nature; you can’t observe the counterfactual, which is why you need good studies (which seem to be in short supply).

  60. Emp says:

    One of the things that makes me see red is a defense of the idea that women shouldn’t drink during pregnancy.

    It’s their damn body, shut up and stop telling them what to do with it. They are fully within their rights to abort the pregnancy, so the question of a 0.01% chance of negative effects (and no it doesn’t matter even if that number was 1, 5, 10 or 15%) curtailing body rights is absurd. That’s a regressive, sexist, patriarchal norm that anyone should be ashamed of defending and I’m saying this as a person who isn’t particularly liberal or progressive and does NOT self-identify as a feminist, because I disagree with the philosophies of those who aggressively identify as feminists.

    Women aren’t baby factories designed to sacrifice their lives to slightly increase percentage chances based on dubious and often biased studies.

    • Murphy says:

      They are fully within their rights to abort the pregnancy but if they’re not planning to abort then telling someone to not drink is no more morally bad than telling them to not stare at the sun or not lick clocks with radium dials or to not drink when they’re suffering liver failure.

      It’s their body but they and/or everyone else is going to have to deal with the consequences of them damaging it and the child. Anyone who’s likely to suffer consequences (so anyone who might end up assisting caring for a maimed child) would seem to have an extremely good claim to a right to try to convince her not to drink while pregnant.

      She has an absolute right to make the final call. That does not strip everyone else of the right to try to convince her one way or another.

      If your mum or dad/husband or wife is suffering liver failure s/he has an absolute right to drink vimself to death but that doesn’t require vis dependents to remain silent. Vis rights don’t cancel out yours.

    • DrBeat says:

      It’s way more than even 15% and yes, it DOES matter.

      If there was a drug that was guaranteed to make your baby miserably and violently disabled for their entire lives, would you be completely okay with pregnant women taking it because “it’s their body”? I don’t think you would, and if you are, you shouldn’t be. This is one of many, many, many situations we encounter where one person’s rights have to be weighed against another, and saying that the rights of adult (popular, photogenic) women override everyone else’s in all cases is deranged. You have a right to swing your fists. Your right to swing your fists ends where my nose begins. Women have a right to drink or take drugs. Their right to drink or take drugs ends where someone else’s irreversible and debilitating brain damage begins.

      Also, how can you think things are “patriarchal” and not be a feminist? Those things are inextricably linked, it’s like saying “Now I’m no Communist, but the proletariat is being exploited when anyone else receives a profit!”

    • Scott Alexander says:

      Are we talking about a glass of wine here and there, or about downing a whole bottle of whiskey every day? If the former, I agree there’s no good evidence to show it does much. If the latter, the kid will get fetal alcohol syndrome and I don’t think people have a right to create people who they know are going to have those kinds of problems.

      • David N says:

        “I don’t think people have a right to create people who they know are going to have those kinds of problems.”

        Doesn’t that directly contradict what you wrote above about achieving an autistic child by repeated trials and abortions?

        • Wrong Species says:

          I think the difference is that everyone agrees a world in which no kid had fetal alcohol syndrome would be better.

          • Emp says:

            That’s not the same as “we will restrict people’s personal body rights” in order to avoid that result.

          • Wrong Species says:

            You have to realize that once you get pregnant, it’s not just your body anymore. You also have to consider the body of another living thing inside of you. I’m ok with restricting peoples personal body rights(to a limited degree of course) if it would eliminate fetal alcohol syndrome.

        • tcd says:

          There is a genetic vs. environmental difference. Think being born with a defective limb vs. making a normal limb defective.

          This is all adjacent to the recent stories of mothers being arrested for drug use during pregnancy.

      • Murphy says:

        Reminds me of an awful old joke:

        3 pregnant women were waiting in the doctor’s waiting room for an antenatal
        check-up and were all knitting garments for there respective babies.

        Suddnely the first expectant mother stops knitting, checks her watch,
        pulls a bottle of pills from her handbag and takes one…

        “What was that?”, the other two ask, curiously.

        “Calcium tablet. Good for mommy, good for little baby”, she replies, patting
        her stomach affectionately.

        Satisfied, all 3 continue with their knitting…

        5 minutes later, the second one stops knitting, checks her watch, takes a bottle of pills from her handbag and takes one…

        “What was that?”, the other two enquire

        “Vitamin tablet”, she replies, “Good for mommy, good for little baby” and
        she pats her stomach affectionately.

        All 3 smile and continue busily with their knitting…

        5 minutes later, the last woman stops knitting, checks her watch, takes a bottle of pills from her handbag and takes one…

        “What was that?” ask the other two…

        “Thalidomide. I can’t knit sleeves…”

      • Emp says:

        The problem is that the norm isn’t “don’t binge drink” (which as a suggestion should be a norm irrespective of whether you’re pregnant or not). The norm is “don’t drink at all” which is a destructive and sexist norm. Suggesting that all women’s lifestyle choices while pregnant should be geared around gaining or 1 or 2% percentage points for their children’s futures is just incredibly sexist.

        I detest it when people casually demand sacrifices of others at no cost to themselves and this is one of the best examples of that.

        • Randy M says:

          Speaking as a card-carrying Patriarch, rants in favor of dosing fetuses with alcohol are just about the best press imaginable for my kind of regressive, reactionary worldview. Thanks!

          • jeorgun says:

            I know you’re joking, but my certainty that being pro-life is the morally correct opinion has genuinely gone up about 20% as a result of that comment.

          • Randy M says:

            Serious except for the tone; I went for facetious to avoid breaking the rules of the blog.

        • Cauê says:

          Women help to enforce this norm at least as much as men. People also forbid family members, male or female, to smoke when there’s a baby in the house. People don’t think quantitatively anywhere near as much as we should, and least of all when sacred values are involved. I don’t see why sexism would be required to explain this.

        • Wrong Species says:

          If sexism has come down to “women shouldn’t drink when pregnant” then I would say they are doing pretty well for themselves.

          • HlynkaCG says:

            I know right?

            At what point do we call the war over and release the prisoners?

          • Emp says:

            Obviously that’s not the only problem women ever face.

            And that’s not really an argument for why a supposedly right thinking person can endorse this kind of toxic discrimination and sexism.

        • Chalid says:

          I want to support this post since it’s getting flak. There is no evidence that a drink a day has any effect whatsoever on the fetus. Women are told not to drink because doctors believe that women who hear “drink moderately” will just hear “drink” and go on a bender. It’s infantilizing as hell. As are a ton of the other pregnancy guidelines.

          (Smoking is really bad though, I fully support shaming that.)

          • Anonymous says:

            I think pretty much all advice given to people is more strict than necessary, on the basis that some people are bound to break the rules a little, and therefore since your advice can never be perfectly correct for everyone, it’s better to be overly strict than overly lenient.

            Two examples: use-by dates on food, and sex education.

          • Chalid says:

            I do think the degree of infantilization of pregnant women is far stronger than the infantilization inherent in food labelling – and I do think it is in part sexism. My wife had a baby recently so perhaps I am extra sensitive to this. It’s not just alcohol, there’s caffeine and a huge list of off-limits foods and activities for which there is dubious to nonexistent evidence of harm.

            That said, I don’t feel like doing the work and comparative research to distinguish this from conservative advice in food labelling.

          • Anonymous says:

            @Chalid

            Perhaps. On the other hand, when we are talking about affecting a person’s entire life, right from birth to death, I think it is unsurprising that extra extra precaution is taken.

            And if doctors informed women that it was okay to drink moderately, for example, do you really not think that there would be lots of women who went on to drink excessively – thinking, oh, it’s only a little over the guideline, it can’t hurt? Some proportion of people will always ignore guidelines. I’m really not seeing the case for this being sexism.

          • Chalid says:

            Or maybe women will find themselves hedged in with a hundred BS rules, won’t be able to figure out which ones actually matter, and will guess wrong? Maybe they’ll think they deserve a cigarette to reward themselves because they virtuously avoided deli sandwiches all week? Or maybe paranoid nighttime self-monitoring of sleep positions will cause them to be extra-tired and get in a car accident. Maybe they’ll find out they were lied to about alcohol and then think that the cat litter rule sounds like BS too. Maybe the stress of going cold turkey on caffeine leads to bad stress-related effects on the fetus. Who knows?

            In general, people have finite willpower and it should be saved for things that matter. And being pregnant is hard enough without adding extra obstacles.

            To your point about sexism – it’s really hard to prove sexism in any context. See: any discussion of sexism. I’m not going to even try. But unnecessary lifestyle restrictions that only affect women aren’t obviously not sexism.

          • Anonymous says:

            @Chalid

            I agree that there are obvious downsides to giving advice that is excessively restrictive – for all situations. As you said, it probably often does cause the person who has learned that one particular guideline is excessive falsely assumes another one is too.

            To return to my example of sex education – the advice given, at least when I was at school, was along the lines of “you must use a barrier type protection at all times. It doesn’t matter if you’re with a stranger or your spouse of fifty years. It doesn’t matter whether you’re having oral, anal, vaginal sex – all are equally capable of spreading STDs. Remember, when having oral sex, always use a flavored condom or a dental dam.” I often wonder how many unwanted pregnancies are caused by young people who first realize that dental dams essentially do not exist in real life (if you don’t have one, you can cut down the side of a condom! hahahahaha, this still cracks me up) and go on to infer that all contraception is equally unnecessary. It’s a low bar, but I bet this has happened at least once.

            You’re right that it’s difficult to prove sexism. But in this instance it’s extra difficult as we have nothing to compare it to, as men don’t get pregnant. Necessary or unnecessary, these lifestyle restriction (guidelines) are always going to apply to women only, for a very good reason.

          • Chalid says:

            Haha, when you first mentioned sex ed I thought you meant abstinence-only, and I decided not to go there 🙂

            I think if I were arguing for sexism affecting pregnant women, I’d make the case that parenting in general burdens women more than men, and then argue that the cause is partly sexism; and I would then conclude that whatever sexism led to the parenting work disparity was also likely to be at work in pregnancy. (e.g. something like “Women are expected to put the needs and desires of their children before their own needs of desires to a far greater extent than men are; this implies both that women will be expected to do most of the childcare and that there will be unreasonable expectations for their behavior during pregnancy.”)

            Anyway I think the hard part of that argument is demonstrating that sex differences in parenting effort arise in part from sexism. I’m sure there’s a vast literature on the topic but I have no idea what it says 🙂 Having admitted that, I’ll say that my uninformed opinion is that sexism does play a role in the parenting work disparity. And I’m definitely not someone who sees sexism everywhere.

          • Murphy says:

            Blame every mother in history who’s sued someone after their child came out deformed in any way.

            If the doctor says “one glass of wine is ok” and her baby comes out maimed because her idea of “one glass” https://media.gettingpersonal.co.uk/164534/images/products/10/30210/rwf/three-bottle-giant-wine-glass-_a.jpg was very different from what he meant.

            Pretty much every OTC medication has warnings against using while pregnant before consulting a doctor again because of the legions of women who’ve overdosed on something then promptly sued the company when their child came out fucked up.

            Hell it’s not just pregnant women that get told insanely low limits. The max daily dose for most medications is a small fraction of what is likely to cause notable damage but real people go over the limits . If the real limits were listed people would be maimed left right and center.

          • Stefan Drinic says:

            This comment thread has inspired me to tell any hypothetical pregnant partners of mine that I’d quit drinking right along with them.

            Then again, this would be a really small sacrifice for me, and the same would go for my current SO.

          • Roxolan says:

            @Stefan Drinic: Bethany Soule (http://messymatters.com/autonomy/) would probably tell you that rather than make a conspicuous sacrifice that doesn’t actually make your lives better, you ought to figure out how much alcohol consumption is worth to your pregnant partner (i.e. if someone were to offer them money in exchange for them going teetotaler, how much money would get them to accept) and pay them half of that amount in cold hard cash out of your own pocket.

            (Or all of that amount, if they themselves don’t care about giving their child foetal alcohol syndrome.)

          • Jiro says:

            Roxolan: By that reasoning if I see a mugger about to slit the throat a victim who doesn’t have $500 that he demands, I should pay the mugger $500 but I should not stop the mugger from trying to slit the victim’s throat (even if I for some reason could do so safely.)

          • Roxolan says:

            @Jiro:

            > By that reasoning if I see a mugger about to slit the throat a victim who doesn’t have $500 that he demands, I should pay the mugger $500

            Yes, that analogy works (IF you consider the future child morally equivalent to the muggee AND your pregnant partner doesn’t).

            > but I should not stop the mugger from trying to slit the victim’s throat (even if I for some reason could do so safely.)

            Sure, you can do that. But then you need to be damn sure that you aren’t the baddie, because “impose your own values upon unwilling others without compensating them” doesn’t work well with the enemy control ray (https://thingofthings.wordpress.com/2015/05/15/the-enemy-control-ray/).

            Now obviously we can’t base our entire society on the enemy control ray; we do want muggers stopped, not paid off.

            Just, be damn sure.

          • Stefan Drinic says:

            I don’t like the idea of having to pay someone carrying my child to do a good job of it at all. Ideally, I’d cease working at all/go do so at a minimum, lock them in a cage for nine months and do everything I could to ensure the best possible outcome, but that’s both very impractical and unlikely to work out very well. Rather than treating a grown woman like a child or an employee and giving her big girl money because she won’t drink, I find the idea of quitting drinking along with her much more intuitively appealing.

          • Jiro says:

            Nothing works well with the enemy control ray. It’s a useless test. It only seems to work because the way the translation works is vague, and someone proposing the thought experiment can pick a translation method that makes it work.

            Otherwise, you tell Nazis not to hurt people. It gets translated as “don’t hurt Aryans”. You try again by saying “don’t hurt people based on irrelevant characteristics such as religion”. It gets translated to something the Nazis actually believe is an irrelevant characteristic and comes out as “don’t hurt Aryans based on their shoe size”. You modify it to “don’t hurt either superior or inferior beings” but the Nazis think of Jews as in the same category as potatoes and bacteria, so it comes across as “don’t hurt either Aryans, or inferior beings such as Jews, potatoes, and bacteria” and the Nazis all starve to death or die from infections, which may be a good outcome but really doesn’t tell us much about morality.

        • RCF says:

          If children have a life expectancy of 80 years, then a 2% increase in quality of life corresponds to 20 months. It seems to me that there’s quite a case for enduring some inconvenience for nine months, in exchange for 20 months. And just because something affects women, that doesn’t mean it’s sexist.

          • Marc Whipple says:

            And just because something affects women, that doesn’t mean it’s sexist.

            I see you didn’t get the memo.

          • Emp says:

            If “you should endure inconvenience to spare others a slightly larger amount of inconvenience” was a generalized principle, things would literally fall apart.

            That is not something that is asked of ANYONE else, in any other context when it comes to restriction of body rights, so the idea that women shouldn’t drink in order to satisfy sexist pricks or currently non-existent people is complete rubbish.

            Anyone demanding complete strangers to make sacrifices for other complete strangers who don’t even exist at the point the sacrifice is being made is behaving in a toxic fashion.

          • Whatever Happened To Anonymous says:

            >That is not something that is asked of ANYONE else, in any other context when it comes to restriction of body rights

            No one else carries babies.

          • Emp says:

            “No one else carries babies.”

            Missing the point entirely. Everyone is in a situation where they could undergo inconvenience to spare others more inconvenience. In NONE of those situations are body rights violated.

            Fetuses are not even people, and I’m not even arguing against legislation (which doesn’t exist on this thankfully). I’m arguing that unless you’re a sexist prick who doesn’t care about it, you should not be telling women what to do with their bodies.

          • DrBeat says:

            That is not something that is asked of ANYONE else, in any other context when it comes to restriction of body rights, so the idea that women shouldn’t drink in order to satisfy sexist pricks or currently non-existent people is complete rubbish.

            You had to add “when it comes to restriction of body rights” because it is, in fact, a thing we ask of people all the time. It’s like the number one thing that we ask people! If it were perfectly permissible to inflict much (much, much, much, much) larger inconveniences on other people to avoid smaller inconveniences for oneself, THAT is when things fall apart.

            When we encounter individuals who inflict larger inconveniences on others in order to prevent smaller inconveniences to themselves, we call them assholes, and we shame them for being assholes, and we are right to do so. It is ONLY when it comes to pregnant women that it suddenly becomes a reasonable proposal to say a woman’s right to drink alcohol overrules another person’s right to not have crippling brain damage.

    • keranih says:

      The level of lowest observable impact of alcohol on fetal development is relatively high. One glass of wine a day has not been shown to have a negative impact. However, as Scott said, drinking to be drunk (half a bottle of vodka) every couple days during most of the gestation will cause significant damage. (Of course, at that rate, it’s not just the *baby* that is being damaged.)

      I don’t think women should damage their babies like that. However, there are definite limits to what I am willing to advocate, much less legislate in order to prevent women from taking those actions. I don’t know if I would put the limits in the same place as you.

    • M.C. Escherichia says:

      > They are fully within their rights to abort the pregnancy, so the question of a 0.01% chance of negative effects (and no it doesn’t matter even if that number was 1, 5, 10 or 15%) curtailing body rights is absurd.

      Not at all. An abortion prevents a person from ever existing to be harmed, whereas significant drinking while pregnant can cause actual harm to an actually existing future person, who will correctly blame you for their suffering.

      • Emp says:

        That logic pretty much makes every woman a baby factory to produce the perfect genetic material. There’s a reason this kind of BS never gets through any court.

        • M.C. Escherichia says:

          > That logic pretty much makes every woman a baby factory to produce the perfect genetic material.

          And elsewhere you write:

          > unless you’re a sexist prick who doesn’t care about it, you should not be telling women what to do with their bodies.

          I feel that creating poisoned people is worse than telling people not to. If your argument was an empirical one – drinking actually isn’t that dangerous – then that would be something else, but your argument seems to be an in-principle one: harming future people is fine. You write:

          > fetuses are not even people
          > currently non-existent people
          > don’t even exist at the point the sacrifice

          This seems to be a major basis for your position. You’re encountering resistance not because of sexism but because this principle is awful.

          • Emp says:

            So point by point 1:

            1) I don’t dispute any of those things. I dispute that these issues are sufficient reason to tell all women not to drink at all, when only incredibly high levels of drinking result in this, to the point where anyone drinking enough to produce this result should be advised not to do so for reasons that have NOTHING to do with fetus. In short, 99.99% of women who are bullied into not drinking or ostracised for doing so, or feel pressured not to do so, are not drinking sufficiently for this to be even a remote possibility. Added to that, the women who actually do drink enough to cause FAS are addicted and won’t listen anyway, so this is a purely destructive norm that achieves nothing of any good.

            2) I dispute that entirely. My mom wasn’t accountable to live her life in a way to create an optimal experience for me. Additionally, please cross-apply all I’ve said about why this extreme example of FAS is a gigantic red herring.

            3) My argument is both. A) In principle personal body rights outweigh the rights of future people who might not exist. and B) It takes grossly abnormal and addictive levels of drinking to create FAS and at this point, it’s damaging enough to the woman that you can advise her to lay off without this being the specific reason.

            I’d seriously appreciate some engagement with the idea that 99% of women who drink don’t drink enough that FAS is a possibility.

  61. Kiya says:

    Two things, first:
    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.

    Maybe a problem disappears…
    Preferences, as part of the brain experiencing them, are presumably subject to your brain-changing device. What if autistic-you strongly prefers to be autistic, but neurotypical-you strongly prefers to be neurotypical? (Or the reverse, but that’s less “moral quandary” and more “darn, sucks to be you.”) Do the two versions of yourself have equal personhood for purposes of rights/utilitarian calculus/whatever moral system, so that you are now forced to either timeshare your body, or kill your alternate self? Does it matter which way you were born? Would the hypothetical alternately-minded version of you deserve protections even if you had never undergone brain-changing? How extensible is the brain-changing device to produce mental states not on the autism-neurotypical axis, and do the answers to these questions depend on the particular mental state it induces?

    I think this is at least as hard a problem as “teleporter that duplicates you and disintegrates the one in the undesired location.”

    Second, on a more down-to-earth note, to those saying things like “I want a drug that cures X and Y symptoms without touching W and Z”… it is good to want things. But drug research as I understand it does not consist of drawing up precise contracts with the pharmacology demons. The choice at the moment is between supporting research aimed at better understanding the biological underpinnings of autism and how various chemicals might affect it, and not supporting such research.

  62. Deiseach says:

    Matthews admits that “people have a image of autistic people as these completely nonverbal children banging their heads against the wall” …But as per Matthews and Silberman, this is just a consequence of the maltreatment these children receive in institutions

    Well, we here in social housing have one family with two autistic children (teenagers now) and they are looking for special adaptations to their house to provide for the boys’ needs. Their sons have never been institutionalised, have always lived at home and attend school, but one of them has to constantly wear a hurling helmet because he bangs his head so much he was doing noticeable damage not alone externally but internally, and this is by no means a unique case amongst our clients.

  63. onyomi says:

    Is there any consensus on to what extent the explosion in autism diagnosis in recent decades actually indicates an increase in prevalence or is simply an increased likelihood of the same symptoms getting diagnosed as autism?

    • LPSP says:

      A very important question. It is also important to ascertain what could motivate a change in diagnosis. Parents attempted to give their kids an advanage in school, or trying to make them look special? Concerned psychiatrists, possibly with ideological concerns? I certainly know the former does occur.

    • Deiseach says:

      As I said, I think a lot of it is simply “Hey, this is a thing and the kid is not being a brat or fussy or picky!” The same as dyslexia revealed there was indeed a reason children found it difficult in classrooms and it wasn’t down to stupidity, laziness or lack of discipline.

      Until you know what the possible explanations for something are, you can only use what categories you have. When autism/autism spectrum/Asperger’s became part of the possibilities, then it gave doctors a reason to say “Perhaps we should refer Johnny or Mary for psychological assessment”, rather than “Well, just sit him down at the table and don’t let him go until he eats his greens!” or “She’s only looking for attention when she starts crying for no reason, ignore her”.

      • onyomi says:

        I am very interested in a variety of “supposedly recently got much worse for reasons, but maybe not” phenomena, like obesity, sperm count, and autism (in the case of obesity, there’s no doubt it’s up, but is just because we eat more and exercise less, or is there something esoteric messing up our microbiome so we feel more hungry?).

        I think in many cases it really is just a matter of being better at (maybe too good at) noticing things which were already there, though I think there are also genuine cases of new problems, like autoimmune disorders (allergies, asthma…), which I think are genuinely on the rise, probably due to excess hygiene.

        And I think it’s the genuine rise of autoimmune problems which probably lent a hint of plausibility to the whole “vaccines cause autism” thing: vaccines plausibly cause an immune reaction; immune reactions gone haywire can cause problems even like type 1 diabetes (immune system attacks your islet cells), which one generally assumes are mostly genetic; therefore, it’s plausible an immune reaction gone hawire during some critical phase of brain development might cause a problem.

        Not saying I think the above is likely (and in any case, I’d take a 1 in a million chance of my child getting autism over a 1 in 10,000 chance of my child dying of measles), but I can see how the rise of autism diagnosis may have created a negative synergy with the genuine rise of autoimmune disorders.

    • Anatoly says:

      There’s no consensus. A typical statement from an epidemiological article on the issue: “Whether and to what extent the identified ASD trend reflects improved identification or changes in the number and/or severity of population risk factors is of keen interest. The contributions of these two possible explanations are complex, difficult to measure, and not easily separable given currently available data.”

    • Douglas Knight says:

      Be careful about autism vs autism spectrum.

      Yes, there is a consensus: there has been no real expansion of full-blown autism. There are many more people diagnosed with autism today than 50 years ago. However, the expansion is not at the high end, but at the low end. There are more people diagnosed with autism+retardation today than before, but fewer diagnosed as just retarded. The total is unchanged.

      The expansion of Asperger’s is more controversial.

  64. LPSP says:

    As someone diagnosed with Asperger’s during late childhood, I generally buy into the idea that Autistic conditions are the inverse of Psychotic or Paranoid-Neurotic conditions – hysteria, histrionics, narcissism, bi-polar depression and schizophrenia/schizotypal behaviour. Like the wings of politics, at the extreme end both families of conditions resemble one another. In politics, ultraleft and ultraright both propose totalitarian utopias, with a few key differences like a thought police on the left vs. ethnic cleansing on the right. In psychology, extreme Autistics and extreme Psychotics both struggle to treat people and objects differently and err in ascribing agency. The far-Psychotic mind assumes conspiracy theories and blames faulty lightswitches for deliberately sabotaging their job interview, while the far-Autistic mind is shocked by generally anything not originating directly from itself and assumes other people act without intent or a personal will.

    This is relevant because everyone has referred to someone as “paranoid”, or being “paranoid” at least once in their life. Everyone has also been paranoid or been called paranoid at one point. We all have probably known, encountered or at least observed one naturally suspicious individual in our lifetime. This is plainly related to clinical diagnoses of Paranoid-Hysteria but the two are not the same. There are correlations with paranoid and bi-polar depression among high-achieving artists in all mediums, just as there are highly-focussed counting behaviours correlated with scientific and mathematic achievement.

    Ultimately, society profits from individuals that veer somewhat from the norm on the spectrum of Nerdy-Oblivious to Artsy-Suspicious. Individuals also suffer greatly and present a net burden to society when they occupy extreme ends of this spectrum. Drawing lines with empirical research strikes my – admittedly autistic – mind as the most sensible solution to the debate. Identify those individuals whose personalities are in the red sectors and give them the cure.

    • Murphy says:

      I think it may be too simplistic to view the 2 as the inverse of each other. For one there are people with both autism and psychosis.

      More confusingly it appears that congenital blindness protects against psychosis (nobody with congenital blindness ever gets psychosis as far as we can tell) but is unrelated to autism.

      • LPSP says:

        I covered the similarities between the two conditions and how they converge in my post. The diagnostic process for autism and psychosis are much broader and poorly defined than our political left and right wing, and while in politics we have a name for individals on the extremes ends of either – totalitarians – there is no equivalent in psychological term widely used by professionals, describing the mutual errors in mentalisation. Were it the other way around, you would see people labelled as both politically left and right wing simulatenously, treat as doubling extreme by normal standards. Like National Socialists.

        That part about blindness and psychosis is very interesting however. Autistics do have finer and more intense senses, and IIRC there have been treatments of autistics with tinted lenses. There’s definitely a sensory component to both conditions.

  65. Deiseach says:

    I wonder if the increase in autism spectrum diagnoses is because we’re finally recognising what’s in front of us.

    What follows has no pretence of any kind of evidence-based rigour, it’s all personal experience, anecdotes, and wild speculation.

    My sister thinks I’m autistic.

    Or on the spectrum, at least. Possibly, back when they were still saying Asperger’s Syndrome was a separate thing, I would have been diagnosed as such, if Irish GPs had known autism was a thing.

    Why does she think that? Because, as she very recently told me, when she went to work in a Camphill Community years ago, the first thing she thought when meeting the villagers with autism was “It’s like living with [Deiseach]!”

    There is certainly a very strong strain of Asperger’s or something along that spectrum in my paternal family line. The more recent generations, who got diagnoses, get tagged with things like social impairment disorders. So this is not, on the face of it, an unreasonable notion that my sister had. (As TMI, the crazy on my father’s side of the family, quite aside from the happy coincidence that I turned out to be aromantic asexual, is one big reason I was determined never to marry and have children – I knew I’d be a dreadful parent and really, with our genetic heritage, yet another generation of fecked-in-the-head was not really necessary).

    And now I come to think of it, maybe that was why, when I was about 9 or 10, my mother brought me to see the doctor. Not our usual family doctor, and I couldn’t understand why, because I wasn’t sick. Looking back on it, I think perhaps she was noticing something off about my development and being concerned. But this being small town Ireland in the 70s, who the hell knew about autism? Even dyslexia was still years in the future, and kids were still being labelled as stupid or lazy, not dyslexic.

    The doctor recommended she let me get plenty of sleep and feed me Complan (again, I couldn’t understand why, as lack of appetite was certainly not a problem). Possibly he put down whatever lack of ‘normal’ interest and interaction I had to listlessness, due to growth and needing a tonic or nutritional boost.

    For years I had no idea why on earth this doctor’s visit took place, and it was only after my sister made her remark that I finally put two and two together. Perhaps I am getting 95 3/4, not 4, though 🙂

    So – is autism a disease or not, and if it is, do I have it?

    I don’t know. But I do know this: whatever I have, it doesn’t manifest as “introverted, likes math and trains, some unusual sensory sensitivities, and makes cute hand movements when they get excited.”

    Introverted? Yes, to the point of paralysis (I know that doesn’t come across here, where I’m telling all you strangers about intimate personal details, but in this context you’re not exactly real to me, and this is certainly not the ‘real’ me that people encounter in everyday real life. Pixels on a screen is what I’m interacting with).

    Unusual sensory sensitivities? Possibly. I hated being touched as a child and I still have little tolearance for it (to the point where it makes me laugh to read earnest young people going on about ‘touch-starvation’ and how dreadful it is not to have any human physical contact for weeks. I haven’t had any for decades, and I don’t feel ‘oh woe is me, I’m touch-starved!’) I can also hear dog-whistles, but I don’t know if this is because – contrary to popular belief – they are not inaudible to humans simply very high-pitched, or what. If anyone knows about dog whistles, enlighten me. (That’s another thing on my father’s side of the family, sensitivity to noise: my father used to react excessively – so I thought – to commonplace noises, like someone coughing or a door slamming. As I get older, I find myself doing the same “startled jumping over small noise” reactions).

    Maths and trains. No and no. Very much the contrary when it comes to maths. On the other hand, as I’ve mentioned before, when it comes to reading precociously, voraciously, voluminously and at a level of vocabulary higher than our age-cohort, my paternal family line will slaughter your tribe and drive off your women lamenting into enslavement 🙂

    Though when it comes to maths and music, I’m the exception in my family. Most of the paternal line are all musical – sing, play instruments, etc. up to levels of making a professional living from it (one genuine bona fide pop/rock star included!) and my father was self-taught and very interested in maths. So there is that, also.

    Cute flappy hand movements when excited. I do this, sometimes when I’m excited, more often when I’m stressed and anxious. You should see me in the throes of an anxiety attack (actually, no, you shouldn’t). It’s not fucking cute at all.

    Well, perhaps if you’re a pixyish gamine early 20 year old, you can pull off “cute” when flailing like a broken windmill. Believe me, it’s not at all cute when it’s a late middle-aged built like the back of a bus Irishwoman wringing her hands, beating her breast, and flailing her hands as if they’re broken at the wrist.

    I don’t know if I’m autistic or on the spectrum (it makes sense in a certain light, particularly with regard to me not having depression as such but rather mood swings, as my counselling session suggested). I don’t know if what I have is a disease. I do think it’s a problem (or a whole range of problems). If there was a fix, would I take it?

    I’d snap it up so fast it would be like a shark took your arm off at the shoulder, is my answer.

    That being unlikely, early diagnosis, intervention and support. If you’re functional and your autism does not hugely impact on your ability to live independently, you can argue about imposition of societal expectations etc etc etc. Part of that, I think, is because bad as things may be nowadays, in the past they were much, much worse. There is support, there are psychological strategies to help people, there’s at least the realisation that this thing exists and these are the effects you can expect and here’s how you work around them. If you, your parents, and teachers and everyone knows from an early stage that you’re autistic, that gives you a lot more options (no, really!) than having to wonder, forty years on, if maybe this is something (else) wrong with you?

    But when you’re like me – feeling like you’re a visiting Martian, you have so few points of contact with the people around you – then yeah, something to help you would be great. Pretending to be normal gets very, very tiring, having to keep it up all the time. Maybe if back in 70s small town Ireland there had been the knowledge that autism spectrum existed and the support to develop what I could of my personality to cope with the challenges of living in the world, my life would have been different. I don’t know, I can’t know.

    It would have been nice to have the option, though.

    • Marc Whipple says:

      A data point for you: When I was younger, I could hear dog whistles. I discovered that sometime after I turned twenty but before I turned thirty-six (which is how long I went between essays of the experiment) I lost the ability to hear them. I can still hear much better than most people my age when my ears are not stopped up due to sinus/allergy problems, but the super-hearing is gone. 🙁

      Actually, :/. While I wouldn’t say it was a sensory disorder, having very sharp hearing in a world where it seems like most people are half-deaf can be more than a little annoying, and not just for me. Ever heard the “Speak up, you mumbling bastards?” meme? Well, I don’t know that I mumble, but I speak in what to me sounds like a normal voice and to everyone else seems like I’m lip-synching.

  66. Sarah says:

    Also: have you ever read autism research? It is pretty bad.
    I *dare* anybody to come up with a cure for autism. I dare anybody to come up with a genetic test for autism. These people are far too confused, and autism itself is far too heterogeneous, for that to even be a conceivable notion.

    My position on developmental disabilities is “sure, go ahead, if you find an *actual treatment*, treat ’em.”

    Phenylketonuria is an illustrative example. There’s a genetic disorder that causes people to not be able to digest the amino acid phenylalanine. If you have it and you eat phenylalanine, you grow up with severe intellectual disabilities. If you get put on a special diet from a very early age and stay away from phenylalanine, you have much milder cognitive problems. I’m pretty sure that phenylalanine-free diets are totally fine.

    Lots of nutritional deficiencies, environmental toxins, and, to take an extreme example, traumatic brain injury, cause cognitive disabilities; I am pretty on board with “parents should avoid these things for their children.”

    If it were the case that (some) autism was the result of a nutritional deficiency or a missing enzyme or something, intervening early to fix that problem sounds sensible.

    That is SO TOTALLY not where we are with respect to autism. We are still talking entirely in terms of behavioral traits. We are talking in terms of a “spectrum”. There is only the most tentative progress towards describing what autism looks like neurologically. I would be totally on board with trying to *understand* autism, but right now, talk of cure is ludicrous.

    Right now, a lot of “treatments” are basically abusive. (Giving someone neuroleptics because they misbehave is not treatment.) So I’m ok with the primary political message being “DON’T TREAT AUTISM, JUST LEAVE US ALONE AND GIVE US REASONABLE ACCOMMODATIONS.” I have issues with the movement myself — I don’t like the fact that there’s a party line and people will think you’re a bigot if you quibble with it — but I can sort of accept that for political purposes you have to communicate one thing, with one voice, everywhere, and if you’re going to communicate one thing about autism it should really be “stop abusing autistic people.”

    • Justin says:

      I think it’s telling that groups like Autism Speaks and Susan G. Komen for the Cure have so many parallels between them. Autism and cancer aren’t things that anyone can even really conceive of a cure for because that’s just not how they work. No wonder the people most loudly talking about finding cures for them are people who have emotional investments in them due to family (rather than direct) diagnoses and have subsequently turned them into big business.

      • Sarah says:

        I actually disagree on cancer being incurable, but that’s a long story. (been writing about it in more detail here: https://srconstantin.wordpress.com/) A major difference between cancer and autism, to start with, is that we know what a tumor is. We can cut it open and look at it. We know that Alzheimer’s disease causes plaques in the brain. We do not know anything on that level about what autism does to the brain.

        But agreed on the fakeness of Autism Speaks and Susan G. Komen.

        • Murphy says:

          I don’t get why anyone would think that Cancer will forever be incurable. In the last few decades alone there’s be massive advances with many treatments for many types of cancer.

          There are some genetic variants quite strongly linked to autism, you don’t have to fully understand the biology in order to link genes to a phenotype.

          I think the current model is a little like the current model for psychosis. Lots of risk genes where many of the individual ones which seem to confer some vague advantages since they appear to be selected for but you start getting disadvantages when you have multiple ones like a genetic game of “chicken”.

          • Sarah says:

            Then you are not talking about cure, you are talking about eugenics. Which has different ethical issues, different methodological challenges, and so on, and should really be a separate topic.

          • Murphy says:

            @Sarah

            Maybe, maybe not. There’s a lot of interesting experimental things like gene therapy or treatments which provide alternate versions of the affected enzymes/proteins for various genetic conditions and we’d have to deal with the same eugenics problem whether it was autism or duchenne’s.

          • brad says:

            I don’t get why anyone would think that Cancer will forever be incurable. In the last few decades alone there’s be massive advances with many treatments for many types of cancer.

            I think the idea is that since cancer isn’t a unitary thing it can’t really be cured.

            A different way of looking at it is: have we cured bacterial infection? And if so, when did we cure it?

          • Murphy says:

            Cancer isn’t unitary but once you defeat a particular type of cancer it stays defeated when you come across it in new individuals, the same approaches continue to work.

            We’ve not totally defeated bacterial infection but we’ve turned it from a horseman of the apocalypse into something you only kind of have to worry about.

            https://imgs.xkcd.com/comics/degree_off.png

            Bacteria mutate and pass between individuals, we need to keep inventing new treatments but cancer, well even if we never invent another new treatment the anti-cancer drugs of today will still work on cancer patient 100 years from now. Every little victory is permanent and it’s not all that out there to think that we can chip away at the thousands of cancer types one by one until they all have good treatments.

          • Sarah says:

            When you’re talking about treatment, the ethical issues are almost entirely about risk-benefit analysis — is this treatment worth the adverse effects?

            When you’re talking about eugenics, the ethical issues are about the moral status of fetuses, and about second-order effects (e.g. will widespread selective abortion of disabled fetuses result in worse treatment of the remaining disabled people?)

            Someone could be pro-treatment but anti-selective abortion (“Killing fetuses is wrong, but treating disorders is ok.”) Someone could also be anti-treatment but pro-selective abortion. (“Autistics don’t want to be ‘cured’ and they shouldn’t have to be; but preventing autistics from being born is ethically ok because no harm is being done to actual living beings.”) The arguments are totally separate.

            The only aspect they have in common is the second-order effect stuff (“If you try to either treat autism or selectively-abort autistic fetuses, you’ll promote a popular perception that autism is bad and increase societal mistreatment of autistic people.”)

    • Free Range Platypus says:

      PKU is actually a good example, because it’s a case where we’ve found the mutations responsible and can screen for them. Although unlike autism they are rarely de novo so genetic counseling before marriage is a better choice for those at risk.

      We already, today, have genetic tests which can guide a diagnosis of autism based on copy number variants. There will soon be no need to treat autism when it can simply be prevented the same way we can prevent PKU or Downs Syndrome.

      • keranih says:

        There will soon be no need to treat autism when it can simply be prevented the same way we can prevent PKU or Downs Syndrome.

        Failing some massive breakthrough in the science in the last twelve hours, we can not prevent Downs Syndrome.

        We can – and do – kill the people who have it, before they are born, but we can’t prevent the condition from occurring.

        • keranih says:

          that is somewhat of an improvement of how it is/was often handled there/then:

          I am…unconvinced that then was worse than now just on that metric, but yes, it’s not like we invented killing unwanted offspring.

          I do wonder what we do, today, from necessity (+/- distaste), that our great-grand children will look on with such horror that they insist our names be stripped from buildings and memorials and all living memory.

        • Deiseach says:

          Exactly. “Preventing” Down’s Syndrome means, in many cases, doing pre-natal screening and then heavily suggesting to the expectant parents that they abort because otherwise their child will live a life of suffering and misery and probably die early, even though there are improved services that can help people with Down’s Syndrome and there is a range of disability; some people with Down’s are very disabled, some mildly so and can even go on to post-secondary education.

          But that’s expensive, so socially we’ve “solved” the problem by not letting such people be born, and by scorning and shunning parents who don’t abort (and talk about “moral obligation” to abort rather than burden society with the cost of looking after your defective spawn is ostracism and shunning and scorn).

          That kind of autism “cure” is certainly something to be avoided and rejected.

          • keranih says:

            My window of what is possible to legislate doesn’t include forbidding elective abortions of infants with terminal conditions. (Other people may disagree, and my moral ideals do include advocating against these actions, for reasons I find rational but won’t elaborate on here just now.)

            So I can see a social determination that we keep this option on the table. I do think we need to be far more careful in the execution of this option than we have been, and I see little justification for putting either autism or DS in the same bucket as lethal congenital contracture syndrome.

    • Michael Vassar says:

      A Baylor M.D. Geneticist and autism specialist who I discussed it with believes that L-Carnitine supplementation can greatly reduce the expected lifetime severity of what would otherwise be considered minor autistic-spectrum pathologies such as those of many of our friends.

      Agreed that 99% of autism research is worse than useless, to a degree far greater than is normal in medicine or even in psychiatry.

      • Sarah says:

        Right, it’s possibilities like that that I’d be in principle okay with if they panned out. (As voluntary choices by parents.) A major component of what bothers me is the object level — autism “treatments” with serious risks and no benefits. I think people’s intuitions about treatment would be notably different if it were something like “give your baby a harmless supplement.” It still wouldn’t be a no-brainer, though — to some extent my impression is that strengths and weaknesses cluster and you might give up desirable qualities when you give up these so-called “minor pathologies.” Once again, the object-level effects of a putative treatment matter.

    • Frank says:

      I don’t like the fact that there’s a party line and people will think you’re a bigot if you quibble with it

      I wonder if autistics are disproportionately represented among SJWs? Difficulty empathizing and spending lots of time reading the internet isolated from regular people being common characteristics?

      (Note: I have some difficulty empathizing with people and I spend lots of time reading the internet isolated from regular people, but I’m self-diagnosed neurotypical.)

  67. Sarah says:

    So, about institutions, you really need to read this article: http://archive.autistics.org/library/conversation.html

    These are two autistic people who have been institutionalized and think all institutions should be abolished. And it is very instructive.

    *Part* of the problem is abuse. Being beaten by staff and so on. But that is only part of the problem. Part of the problem is that being an adult who is totally under someone else’s control in your day-to-day activities, as you are in an institution, is psychologically damaging in itself. Humans are not meant to be 100% submissive to authority figures, and if you are, you lose the skills necessary for surviving independently. A “good” institution without abuse would not solve that problem.

    • Marc Whipple says:

      I tried reading that and I just couldn’t. I don’t mean to sound lazy (and will understand if you think so anyway) but what is it they propose to do with people whose families can’t or won’t support them and who can’t take care of themselves?

      • Sarah says:

        Supported housing: i.e. the government subsidizes the apartment and the aides, but the disabled people have autonomy over their daily lives.

        • Marc Whipple says:

          And if the disabled people use their autonomy in ways that are harmful to themselves or others?

          • Sarah says:

            Here, I’m not sure if I’m representing “disability politics” standard positions, but I don’t actually think I believe in the “danger to self or others” thing. If a disabled person is violent, all the standard laws apply to them: self-defense is legitimate, committing crimes gets you arrested, etc. If they hurt themselves, honestly, that should fall under “shit happens.” It’s generally believed that less bad shit will happen to disabled people given basic living expenses and visiting carers than either keeping them locked up or letting them be impoverished. (It’s probably also cheaper for the government if done properly; homeless people use a lot of public resources.) But yeah, *some* people will use their freedom to hurt themselves. That’s what freedom fucking means.

          • Sarah says:

            Personally, I’m not a big fan of redistribution generally, but possibly the *strongest* case for it is providing for people who literally cannot work. Of all the government programs that should be eliminated, that’s pretty far down the list. And providing resources to the disabled in less authoritarian and abuse-prone ways is pretty much a straight-up Pareto improvement over the way we usually do it.

          • Marc Whipple says:

            Sarah:

            I am at least somewhat empathetic to your position, but it’s not me you have to convince. If you are not free to fail, you are not free. And, by implication, if you are not free to starve, or to bleed to death because you chewed your fingers off, or to die of massive head trauma because you couldn’t stop banging your head on a big rock, you are not free either. No argument.

            But you’re not going to sell most people on that, and if the people in that interview think so, I feel quite vindicated about not reading it.

  68. Murphy says:

    To add to my earlier post. I wonder how much this is a Schelling fence on a slippery slope.

    http://lesswrong.com/lw/ase/schelling_fences_on_slippery_slopes/

    Of the people with diagnosed autism here how many wouldn’t want a cure but would be quite happy to have a pill which toned it down by 10%? Made it just a little easier to talk to other people or toned down the sensory distress while changing your thinking just a little bit?

    Of those who are diagnosable but have kids with much more severe autism: how many would like their kid to be on about the same level as themselves but wouldn’t want to do away with it entirely?

    • Justin says:

      Sounds like a bum deal to me. My sensory issues are relatively minor and I suppose I wouldn’t miss them if they were gone, but the overly empathetic way I think (yes, yes, that autistic people are emotionless robots is a oversimplification to the point of being completely backwards in many cases) is exacly why I don’t think the solution to the way the majority treats the minority in situations like talking to other people is to medicate the minority until they act “normal”. The social model of disability is like peak Let’s Address The Underlying Cause Rather Than Go For An Easy Fix, but I really don’t think I can ever support a model that works purely in reverse.

      • Murphy says:

        Right, lets include a pill which tones it up 10% as well then. If one of your kids wasn’t autistic at all would you want to feed them the pill until they were on the spectrum? Why/why not?

        I’m under no illusions about empathy, again though I don’t like that the term “empathy” mixes together 2 completely separate concepts, that of intuitively reading emotion in others from expression and behavior and that of actually caring about what others feel once you know their emotional state. Autism is extremely strongly linked with being poor at the former, not the latter.

        • Justin says:

          I might want that if the entire rest of the world was better adapted to accomodate them, but as things are, it’s still a profoundly disabling set of differences.

          It’s like how even today, even if one would be absolutely accepting of it in every way, it’s still kind of absurd to say you’d specifically want your kid to be gay. Why choose to make things that much harder?

          • Murphy says:

            I can think of some reasons. From my point of view my father’s not at all subtly autistic but is extremely high functioning. It’s quite heritable and of my siblings the one who’s not on the spectrum at all seems least happy/successful while the rest kind of blow the demographic trend lines out of the water in terms of academic and financial success and all have pretty good lives.

            Personally I’m kind of with Mai La Dreapta (higher up) in that I’d almost certainly want to tone it down if I had a kid with severe autism but at the same time I can imagining actually wanting a child of mine to be perhaps a 1/10 on the spectrum because I’m surrounded by people who’ve benefited significantly from being a *little* autistic in both my family and social life with the costs being fairly minor.

    • Peter says:

      Pill: Oh please please please! By which I mean I’d be calling them “the dratted pills” before too long, but that wouldn’t stop me taking them.

      To a certain extent I already have pills to deal with a condition very commonly found along side autism-related conditions – I have my citalopram for Generalized Anxiety Disorder. In fact, trying to get my GAD to shift was how I got diagnosed in the first place. Theoretically I could take a higher dose of the citalopram and have less GAD symptoms, but I don’t want the side effects. I could well imagine autism/Asperger’s pills having similar issues.

  69. PJ says:

    > “The cost-benefit calculations are totally different. Nerds are probably unhappy, but less so than autistics….[].. 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.”

    I disagree, I don’t think this line should drawn at present or even in the near future. Its too hard predefining a line “what it takes to have a happy life”. MUCH more work needs to go into the genetic and environmental factors that differentiate those on the happyness-lifewinning spectrum; the successful CEO, an underemployed STEM graduate, and your MP3-player-loving-wall-punching patient.
    I am going to guess that actually the genetics on all three will be pretty close, so especially preselecting who is going to be the winner in life is not a good choice to make while they are still in the womb.

    > 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.
    Sad to hear you have to work with really suffering people. I don’t know what to say apart from they are lucky to have you in their lives.

    (and cheers Scott for the article, nice writing, I was literally going to write asking for your views on HFA/aspergers vs “actual” autism last week.)
    (and for another interview on the Neurotribes book:
    http://wrongplanet.net/interview-steve-silberman-bestselling-book-neurotribes/)

    • Murphy says:

      This sounds like The Fallacy of Gray

      http://lesswrong.com/lw/mm/the_fallacy_of_gray/

      Lets take autism off the table for a moment and talk about some other conditions.

      Would you be happy if tomorrow someone came up with a cure for Epidermolysis bullosa? (kids who’s skin falls off generally suffering constant horrific pain)

      How about lesch nyhan syndrome? Severe mental disabilities and a tendency to eat their own faces and fingers.

      Its hard predefining a line “what it takes to have a happy life” but you don’t gain anything by just insisting that there can be no line, that no attempt should be made to make reasonable choices. That’s just calling everything grey.

      • PJ says:

        I will put it this way…I don’t think we as society are equipped to deal with drawing the line. Even defining what is “autism” was changed significantly in 2013 (DSM V). And, if we in the future had confidence to genetically say where is a good place to define the difference between a nerd, someone with high functioning autism (HFA)/aspergers , and severe autism, I would draw the “should cure” line so far south of nerds, it would out of sight.

        And, as for the second part that there should be a line “north of severe autism”, although this is an impassioned argument from Scott, I would suggest the medical community aim for a cure for each individual cofounding symptom (depression/ADHD/…) before hoping for a one shot cure for all.

        • Mary says:

          It does not matter whether we’re equipped. No matter what we do, we ARE drawing a line. Even if we draw it to include everyone, we’re drawing it.

  70. Mary says:

    Three-quarters have eating problems ranging from “picky eater” to “will not eat food, good luck doing something about this”</I.

    I remember the NY Time "Think Like a Doctor" diagnosis where there were two: the immediate cause of the infant's problem was scurvy, and as a consequence, they realized he was autistic, not developmentally disabled.

  71. Murphy says:

    “give him back his fricking mp3 player, you morons”

    This reminded me of a family friend who’s a specialist who works diagnosing autistic children. She regularly has similar but more profanity-laden exchanges with incompetent teachers.

    First an aside to be clear who I’m talking about.

    I feel that collapsing aspergers into autism may not have been the best choice for clear communication about it but lets imagine a scale where “non-verbal, screaming, attacking everyone, trying to chew off your own fingers” is a 10 while “good at math and makes cute hand flap motions” along with a few other more notable traits is perhaps a 1 or a low 2.

    There’s far far more people near the 1 than the 10. I don’t have figures but I suspect there’s some kind of skewed distribution.

    You don’t have to worry too much about the 1’s and 2’s. Most of them don’t suffer notably beyond struggling socially, most of them will go on to do quite well in life and never be diagnosed because there’s no point diagnosing something that doesn’t cause distress.

    I suspect people at this end of the distribution also make up the lions share of the tumblr “it’s not a disease” community. They probably wouldn’t have been casually diagnosed but either a specialist picked up on it or they went looking for a diagnosis.

    The 7’s and up tend to have been spotted early because even non-specialists can see the signs.

    There are lots of kids who are perhaps a 3 to a 6. Kids who can communicate but who have varying levels of problems. These are the majority of the kids she has to deal with. They’re not in such a bad state that it was picked up by non-specialists. In years past they would have just ended up with teachers deciding they were intellectually disabled. Often they’ll have been noted as being problematic or struggle in school because teachers and others know there’s something wrong but don’t realize it’s autism.

    A common symptom (as she put is) is that they’ll have a “thing”, more formally “Obsessions”, something that they care about a great deal. It might be lego, it might be spiderman, it might be electronics, buttons, clouds, almost anything but the kid will be consumed by it and it can last years, decades or more.

    So we come back to “give him back his fricking mp3 player, you morons”. When a child has autism and an obsession they want their obsession to be involved in everything. If it’s lego they’ll want to always be near lego. A lot of incompetent teachers across the country see this behavior and treat it as a dominance game.

    They assume it’s like a normal child trying to thumb their nose at the authority figure. So they take away the lego, or they take away spiderman and suddenly life is nothing but a battle. The child is constantly upset because lego or spiderman has been taken away while the teacher is constantly struggling with the child but now they’ve made it about dominance and won’t give up the fight.

    So a large part of her job consists of battering inept teachers over the head and saying something like “give him back his fricking mp3 player, you morons”.

    She has to repeat some variant on this quite often “He’s not doing this to fight you or to belittle your authority. He’s autistic. He cares more about lego than he does about you, me or his parents. Just let him have it on his desk or in his pockets or around his person and don’t get upset when he seems distracted by it”

    The child does better, the teachers and parents do better and everyones lives become easier.

    I can see why some people might still not want a cure. Think of something you care about, the thing you like to think about whenever you have free time. Perhaps art, perhaps philosophy. Would you want a pill that made you stop caring about it in exchange for really caring about the football, jersey shore and big brother like everyone else even if it meant you’d be likely to be suicidal or unhappy?

    • Scott Alexander says:

      “I can see why some people might still not want a cure. Think of something you care about, the thing you like to think about whenever you have free time. Perhaps art, perhaps philosophy. Would you want a pill that made you stop caring about it in exchange for really caring about the football, jersey shore and big brother like everyone else even if it meant you’d be likely to be suicidal or unhappy?”

      By far the creepiest treatment of this I have ever read is Vernor Vinge’s “A Deepness In The Sky”. You might find it interesting/horrifying.

      • Murphy says:

        SPOILERS FOR ANYONE WHO’S NOT READ “A Deepness In The Sky”

        Oh I adored that book.

        Are you referring to some of the “focused” at the end who refused further treatment after reaching the point of being able to understand and make their own medical decisions? That bit didn’t bother me so much.

        I found the whole idea of the manufacturing process for the focused quite disturbing.

        Though I can imagine some people finding the concept of something like that with an on/off switch appealing. Even the talk of the Emergent’s home planet with the lottery to decide who ends up “focused” at the end of university was pretty bad.

        minor spoilers “Schild’s Ladder”

        On the other hand have you ever read “Schild’s Ladder” by Greg Egan?

        One concept in that was that the polity had to produce new minds but once they qualified as citizens their minds were utterly immune to all outside interference unless they allowed it hence the system which tried out new mental variations had to be utterly paranoid about potentially producing minds which might turn in on themselves and experience endless pain because at that point nobody could help in any way for the remaining billions of millennia.

        Though the thing which made me shudder was the idea of some people applying mathematically provably self-sealing patches to their own mind such that once applied it was provable that no outside entity could convince you to remove the patch and no internal thoughts could lead to you choosing to remove it no matter how horrible the effects of the patch.

        • grendelkhan says:

          Oh, Greg Egan is the best about this sort of thing. The protagonist of Quarantine is a cop who has a set of onduty mods which sound an awful lot like being Focused, and I found the notion of spending a chunk of your life not-as-yourself to be more disturbing than expected.

          And the ability to pick up a damaging outlook also showed up in Diaspora, an outgrowth of some of the ideas in “Axiomatic”. From chapter six:

          It was an old outlook, buried in the Ashton-Laval library, copied nine centuries before from one of the ancient memetic replicators that had infested the fleshers. It imposed a hermetically sealed package of beliefs about the nature of the self, and the futility of striving … including explicit renunciations of every mode of reasoning able to illuminate the core beliefs’ failings.

          Analysis with a standard tool confirmed that the outlook was universally self-affirming. Once you ran it, you could not change your mind. Once you ran it, you could not be talked out of it.

          Or from The Golden Age, chapter “The Golden Doors”:

          “ ‘Mistake’ is such a simple word. An adult who suffers a moment of foolishness or anger, one rash moment, has time enough to delete or destroy his own free will, memory, or judgment. No one is allowed to force a cure on him. No one can restore his sanity against his will. And so we all stand quietly by, with folded hands and cold eyes, and meekly watch good men annihilate themselves. It is somewhat… quaint… to call such a horrifying disaster a ‘mistake.’ ”

        • anon says:

          I don’t understand where the Emergents were getting all the skilled people to focus. If having technical or scientific ability put you on the list of lottery candidates, it would be about a generation at most before everyone learned not to demonstrate any kind of skill whatsoever, meaning a total lack of people capable of sustaining their civilization. There’s a throwaway line that implies the Emergent homeworld would usually just replace focused people if they ever caused problems or outlived their usefulness, so they can’t have been in short supply. It seems like the only way they could plausibly get more was to capture people from other technological civilizations though, which only lasts as long as you have other inhabited worlds at the same (or greater) technological level in arm’s reach.

          E: I suppose you could get a stable of focused economists to work out the optimal chance of losing the lottery and being focused at, such that the expected benefits of education would outweigh the potential loss of being selected. But you’d have to set it differently for different majors and career tracks, since society needs different amounts of focused people in each field. But then you can’t let anyone know that each one has a different probability, because that would affect people’s decision making, and then you’d have to change the likelihood again…

          I wonder if the Emergent lottery was supposed to be a take on the one from Republic, since it seems like it would also have to be secretly rigged while pretending to be purely random.

          • Murphy says:

            I think the idea was that if you won the lottery and didn’t get focused you still had to get through life. If you were skilled and capable you could reach great heights. Note that the focused on the ships were all captives so nobody really cared about them but it’s hinted that focused on the homeworld could be reverted eventually.

            Think of it as like a military draft with candidates picked by lottery. If you survive you get some kind of payoff at the end.

            Vinge didn’t go too much into the homeworlds system but I can imagine people opting into a system where you wake up age 35 or 40 with a few million bucks (some fraction of your economic output while focused). If you choose a lucrative profession you or your family could become extremely wealthy. Considering that one of the focused was able to casually create items which according to the characters would be worth the price of a starship on some worlds… focused could make significant incomes.

            The scary thing is I can imagine that if such a thing were possible it wouldn’t be that weird for a real human society to adopt such a system.

          • Deiseach says:

            The scary thing is I can imagine that if such a thing were possible it wouldn’t be that weird for a real human society to adopt such a system.

            Not weird at all. Consider Apple and Facebook offering to pay for female employees to have their ova frozen.

            Work was not made for man, man was made for work! Is there any clearer signal? Use your most productive years to make money (for your employers) and then, when you’re over-the-hill in terms of employment prospects, you can have children and a family life.

            Leaning on people to have themselves upgraded for better productivity is the same kind of carrot-and-stick attitude; you’ll make a ton of money and have a nice jackpot waiting for you at the end of the upgrade, not-yourself, period while on the other hand, if you don’t avail of it, you’ll be out-competed by your colleagues and may indeed render yourself unemployable (why don’t you want a perfectly harmless, reversible procedure that is good for the company, good for the economy and so good for society?)

            Asking people to adjust their patterns of eating, drinking, and going to the toilet so they won’t interrupt maximum production-line setups with inconvenient and irregularly-timed bodily functions is now acceptable (and was defended by several commentators on here in a previous thread). That level of bodily control can easily be extended to mental control, if it’s not already; the ubiquity of being always in touch, always able to be contacted via phone and email so you never have ‘free’ time if the job can ring you at 12 o’clock at night or spring on you that you’ll need to work double or triple shifts for a big push over the next few days?

            It’s a very short step from that to “switch your brain into a different track so you don’t, and can’t, care about anything other than the job” for a short period of your entire life.

          • anon says:

            ‘it’s hinted that focused on the homeworld could be reverted eventually. ‘

            ‘It’s a very short step from that to “switch your brain into a different track so you don’t, and can’t, care about anything other than the job” for a short period of your entire life.’

            I wish I had the book in front of me now, but I’m pretty sure we get hints throughout the story that it’s very rare for the Emergents to ever deFocus anyone, and they don’t even necessarily know how to do it safely. Being drafted is statistically pretty unlikely to mean death or even serious injury in most cases, whereas Focus is basically permanent. The offer of deFocus seemed mainly like something they dangled over subject populations to get them to accept it until they were no longer useful, IE the case of Ezr Vinh being convinced to collaborate by the prospect of them eventually deFocusing his waifu

          • DensityDuck says:

            Keep in mind that the frozen-ova thing is not all it’s cracked up to be, as it were. Pregnancy success is a function of maternal age at gestation as it is ovum age, and implantation of an externally-introduced ovum has its own issues.

            In about twenty years look for a lot of lawsuits against Apple, Google, and fertility-preservation companies from women in their forties who’re on their tenth pregnancy attempt and their third miscarriage.

        • Kyre says:

          The bit about one of the characters applying a universally self-affirming modification was in “Diaspora”, wasn’t it ?

      • Bassicallyboss says:

        I don’t often experience emotions during stories except for sadness or melancholy–usually, any feelings come upon reflection. However, “A Deepness in the Sky” made me feel more emotion than even my own life usually does.

        (Deepness in the Sky spoilers may follow.)

        I had to put down “A Deepness in the Sky” a few times though, because the situation with the Focused and poor Qiwi’s plight triggered a very strong NO WRONG BAD NOT-OKAY NOT-OKAY STOP reaction that made me feel very angry and very vulnerable. It was very good, but I almost didn’t finish it. In the end, the situation was so horrible that I couldn’t deal with things staying as they were, so I had to finish and hope for a happy ending. (My first Vinge book, too, so the whole time I was literally biting my nails and dreading that the next page would reveal him as an author who likes to crush your hopes.) Only that and the Spiders kept me going. I had to see what happened with the adorable Spiders.

        It felt like being in a dream where your loved ones are about to be killed, and you can’t speak to call out to them, and you run to them but you’re heavy, moving in slow motion, and your stomach is knotted with worry. The end was when you wake up, sweating, and feel the knot evaporate, and the fight-or-flight slowly melt, and you feel glad for what didn’t happen, but mostly you feel exhausted from the experience, and lighter by thrice your weight for the vanished stress.

        • I like Vinge’s work, but that was one of two books of his that I didn’t finish because at some point they got too dark for me. I mentioned that to the author and his response was that he could write darker than he could read.

          Arguably one of my limits as an author is that I can’t, or at least don’t.

        • Murphy says:

          Have you read Fire Upon the Deep?

          You know that happy/light ending in Deepness in the Sky? If you read Fire Upon the Deep you realise that the ending was actually very dark too.

    • Deiseach says:

      Would you want a pill that made you stop caring about it in exchange for really caring about the football, jersey shore and big brother like everyone else even if it meant you’d be likely to be suicidal or unhappy?

      I don’t know; would you like having a meltdown because when you set the table (that was my job as a kid) it’s supposed to be green plate-blue plate-green plate-blue plate and there are two plates of the wrong colours together?

      It took me a long time as a child to work out that most people don’t stress themselves into stomach pains over two plates of the wrong colours being side by side.

      Oh, and the fun repetitive ritualistic compulsive actions/behaviours! I had to break myself of that as a young teenager (and again, nobody said anything to me about it because I didn’t tell anyone about it) because it was getting worse and worse, to the point of it would take me a long while to perform all the actions in the right sequence of movements and then copy them backwards (and then reverse forwards, and then reverse backwards the other way).

      If I’d let myself continue, that would have really been bad, so I made myself stop (with a lot of mental distress but I got there). Yeah, if there were a pill that made me stop caring about stuff like that, I’d take it.

      Edit: Why did you have to mention the football, was it because you know I’m stressing out over Liverpool’s new manager (mainly because he’s so perfect for us, it can only all end in tears and despair), did you want to upset me???? 😉

      • Murphy says:

        😀

        That sounds more OCD-ish to me that autism-ish to me though I’m not an expert, I get the impression people are less attached to OCD at any level.

        Ah childhood.

        Patterns were so important, things had to be multiples, or perfect fractions.

        As a small child I’d get quite deeply upset if the route home didn’t mirror the route out. Circular or alternate routes were no good and at age 4ish sobbing because I’d heard of multiplication but didn’t know how it worked and being deeply upset until someone explained it.

        I don’t think my childhood was so bad because by that point they’d already had a few kids with similar early obsessions and behavior patterns. Things aren’t so bad when you’re surrounded by people with similar internal experiences of the world.

        • Deiseach says:

          Pattern, routine, repetition. I still deal extremely badly with change, to the point that I fly off the handle and come apart so fast you’re liable to be hit by the shrapnel. I eventually bought all-white plates to break myself of the “it has to be green plate-blue plate” thing because honestly, objectively it’s ridiculous to be so rigid about putting goddamn sideplates on the goddamn table for the goddamn tea-time.

          A lot of how I function when interacting with other people is repression and suppression. I may be screaming inside my head SHUT UP SHUT UP JUST PLEASE SHUT UP YOUR VOICE IS ANNOYING ME TO DEATH when someone is speaking in their ordinary everyday voice that usually* doesn’t annoy me, but I don’t say that out loud (any more) 🙂

          *Usually, but very small amounts of stress or simply more environmental stimuli than usual because the place is busy and noisy or congested, and I react badly,

      • alexp says:

        Maybe this will make you feel better about it?

        http://media.balls.ie/uploads/2013/09/klopp.gif

  72. Peter says:

    I’ve got an Asperger’s diagnosis, and find myself somewhat anti-anti-cure. Although what I find myself fantasing about is a treatment – ideally I’d have a dial, but something you can take that acted about as aspirin or caffeine or ethanol and wore off about as fast would be lovely – something faster than my citalopram, please. Also, that Wakefield guy was a complete scoundrel on multiple levels and his work was worse than worthless, but if by some conterfactual it turned out that mercury in vaccines really did cause autism I’d be all for banning it pronto.

    I think that cure/anti-cure attitudes correlate with severity/diagnostic category less than you might expect – obviously some people are too impaired to have or express opinions, but apart from that… Ozymandias mentions people with quite severe impairments, or histories of the same, being quite staunchly anti-cure. I think that are a few more factors. One – if you’re surrounded by people with bad attitudes, then that might look like the primary problem, but when you’re in a weird liberal bubble where everyone is completely accepting and you still have problems then you might see things differently. A second factor is probably just personality; for whatever reason some people seem to be of the crusading type and anti-cure activism looks like an outlet for this. Third; there’s the meaning and purpose factor – crusading against prejudice etc. is a way to give your life meaning and purpose (which may be lacking if you find yourself blocked from some of the usual outlets). For me, I suppose Plan A for getting my “meaning and purpose” fix has been to do stuff For Science!, on the one hand a lot of the traits sort of help that (although there’s nothing like doing a PhD in a research group full of very smart people, all more neurotypical than you, to make you feel that Asperger’s is overrated as Science Fuel), on the other hand, a lot of the other traits can work against that (hello executive dysfunction). Which I suppose is why I want a dial.

    (I suspect there might also be a touch of “sides” about this. Anti-cure attitudes I think are part of the whole capital-S capital-J Social Justice thing, and I’ve found myself against that. Partly due to their attitudes on the Great Dating Mores Debate. So I have a dodgy ulterior motive for being anti-anti-cure. I don’t think this is a large factor, but it’s there.)

    • Justin says:

      I’m not sure the weird liberal bubble you’re thinking of actually exists in reality in large enough numbers to be countable. Aside from the name brand anti-autism activism groups, some of the environments that I’ve seen be quickest to either demonize or just completely misunderstand autistic people are those which are otherwise nominally liberal. The only cohesive environments that I’ve ever known to be especially accepting of autistic people is groups of autistic people, and it’s the self-advocacy groups that are most loudly specifically opposed to the cure rhetoric, despite knowing firsthand that there are things that don’t go away just because you’re surrounded by people who get it for once.

      • David Kinard says:

        It definitely does. Hang out in West Philadelphia some time. One of the few places where “anarchist” is a major political affiliation, and openly admitting to be a republican is like wearing a swastika. There are other areas or neighborhoods in cities with what I imagine is a similar political climate. These tend to be neighborhoods that are “gentrifying” and magnets for musicians, artists, activists, and other over-educated, under-employed types.

    • Jeremy says:

      Can I ask what your symptoms are? I am always surprised by how little autism shows through in writing. I always find myself oscillating between feeling like I’m obviously on the spectrum, and feeling that I only vaguely fit the symptoms. I feel like I have a decent social sense (I can feel social norms/emotions/reactions), and I can tell when people have autistic social mannerisms as much as anyone else. But while I would expect autistic people to be just as distinguishable in writing as in any other form of social communication, I have found to my surprise that I totally can’t see the distinction.

      Would you agree with my assessment that you don’t feel at a disadvantage or even out of the ordinary in the way that you communicate through writing? How does writing feel to you vs spoken communication? Is it really just the body language that’s different?

      • Stefan Drinic says:

        I’m obviously not OP, but I do have an Asperger’s diagnosis, and my psychiatrist once told me that Asperger’s is essentially diagnosed by looking for autistic traits and finding everything except the verbal problems to pop up. So, while I’ll leave it to Peter to write a full answer, I feel safe to say that aspies are just as able to write well as people of equivalent intelligence, and that you’ll end up having much more trouble spotting us on forums and such.

      • Peter says:

        Reading various descriptions, I had quite a lot of that same oscillation – when I got the diagnosis, I was genuinely unsure about things and wanted to see what some people who knew what they were talking about thought. My areas of ability and difficulty can be a real mixed bag, and don’t necessarily fit any “profile”. On the one hand, I feel very alone in a crowd very easily, there’s an adult autistic spectrum social group that I (used to?) go to, and I think I was the second most likely person to be a wallflower there (the most likely person was pretty low-functioning), not engaging with the group – yet in terms of things like independent living, having a job, various groups of friends etc. I was one of the highest-functioning people there. Another random factoid: I perform at neurotypical levels on the “reading the mind in the eyes” test.

        Symptoms are a mixed bag – the important ones are the ones that got me to see various professionals at various times. When I was 9 or so my parents took me to see an educational psychologist – I was having social difficulties at school (or possibly my fellow pupils were having difficulties with me – I got on just fine with the teachers). One big thing was my way of talking, both in terms of tone of voice and also using too many long words etc. – being “inappropriately formal” (I’ve read one paper that found this was much more an Asperger’s thing than a HFA thing). There were also “coordination difficulties” aka being a klutz and bottom of the class at sports. The psychologist said I had more autistic traits than the average, but not enough for a diagnosis.[1] That said, the “Asperger’s” diagnosis was still new to psychology then and he wasn’t a specialist.

        Scroll forwards a couple of decades and I had a problem with generalized anxiety disorder which was proving difficult to manange. Partly work – I was having difficulties with teamwork and time management. Partly social stuff too (oh gods it’s complicated. Having AS seems to be a risk factor for not pairing up ever – one of my problems – but also seems to be a risk factor for marital difficulties (a common cause of adult diagnoses) and having kids on the spectrum (another common cause) – go figure). The diagnosis people said “definitely Asperger’s, possibly dyspraxia too, but we’re not qualified to diagnose that one”. There’s a whole bunch of stuff that comes under both headings, like clumsiness and executive dysfunction. Possibly the stuff that leans more dyspraxia-wards is the stuff I’m really frustrated with.

        Language wise, I have a very strong grip on semantics, but have all sorts of frustrations with pragmatics – the whole gamut from conversational turn-taking to dealing well with sarcasm, exaggeration etc. Some stuff on the internet can be difficult for me – in fact I often prefer face-to-face in-person conversation because the pathologies of the internet can really throw me. SSC is a good space that works well for me though.

        There’s this idea of a “spiky profile” – back at my ed. psych. encounter they gave me an IQ test and my subtest scores were pretty variable, especially in the “performance IQ” half, and in his report he mentioned the “spiky profile” by name. Apparently this is quite common not only for autistic spectrum stuff but for related stuff such as dys*ias, ADHD etc. – the fact that the profile is spiky seems to be more constant than any particular pattern of spikes and troughs. Odd ability differences show up in the strangest of places. During GCSE English Literature, I could do Plot, Character and Viewpoint questions quite easily but I was completely thrown by Style and Setting & Atmosphere – I could just about write a bad paragraph or two for those questions. Fortunately the exam structure meant I could dump those questions. Another odd one – I always had trouble with tying my shoelaces when younger, and even when I got the hang of it, until a few years ago they were quite likely to come undone during the day – yet I seem to be very good at cross-stitch.

        Oh yeah, and people with an eye for autistic-spectrum mannerisms tend to see them in me, too.

        [1] There was a phase in my life where I liked to quip that I was a few traits short of a diagnosis. Evidently not.

  73. Stefan Drinic says:

    First off – as has been mentioned earlier in this thread, 80% of this debate is about tribal politics. Matthews is annoying. Autism Speaks is not a positive influence. Mind killing is a real thing. I’m going to try and ignore the tribal aspect inherent in this, so please try to do the same if you’re going to reply to this.

    That said – a lot of what’s written in this post argues from a transhumanist perspective in which a lot of issues curing autism or aspects of it wouldn’t arise because X or Y would happen.

    An example used in the OP is one of comparing the idea of curing autism with that of curing nerdiness. You can argue that nerds are, on average, happier than autistics, and end up providing more utility in general, but this argument has a number of problems:

    – Nerds and autists are (very probably) highly correlated, and a cure for the one would end up with a reduction for the other a lot of the time.

    – A counterargument to this could be ‘most nerds don’t chew off body parts in order to feel less so we can cure one and not the other’, but I don’t buy this as an argument, becauuuuuse

    – People aren’t going to differentiate between things on the autism spectrum.

    The third one is my main problem with the idea of a cure for autism becoming a thing.

    I think it’s fair to say that nonverbal, hypersensitive, epileptic and generally troubled people are going to want to be cured of their issues; if finding a cure for autism can help them, applying such a thing may well be useful. Fine, but this isn’t a very interesting point to make. What we should ask onward, after deciding that severe autism is worth being cured, is whether or not people would still want a cure if we already had ways to get rid of being nonverbal, hypersensitive, epileptic and other issues(digestion, obsessive compulsion, whatever.)

    I find it very implausible to say that because severe autists suffer immensely, which they do, a cure is a good thing because that way they’d stop. If I’m going to have to agree with ‘every decent scientist and mathematician was a nerd’ without any sense of irony, I can decide ‘every Newton and Tesla had autism’ and speak as much truth by the heuristics we’re apparently using. I’m not going to buy the argument that we could get rid of the issues troubling the severely impacted autistics but keep the geniuses, becauuuuuse

    – Most people don’t read blogs like these and aren’t very well-educated. If you’re going to find a way to cure every form of autism, and tell young/expecting mothers that you can get rid of it with some kind of injection/pill, an enormous amount of women would choose to forcefeed their kids that shit ASAP, whether or not their child would end up a severe autist or someone with PDD-NOS or Asperger’s. As long as mothers are going to be protective and people in general undereducated, an all-purpose cure for autism is going to end up equivalent in autism going extinct.

    Finally, the point illustrated in http://www.smbc-comics.com/index.php?id=3717 is very good. Severe autists being caught up in severe suffering is very true, but genetics is a messy business, and even something as simple as ‘try to make sure people don’t end up living in a constent state of sensory overload’ may end up being a problem.

    • Scott Alexander says:

      The way I model this is a cross between the sort of copy-number issue here and something like mutational load. Those sound less hard than some other architectures to treat without causing too many problems.

      • Stefan Drinic says:

        I kind of addressed that in my post already, though. The chances of a worried mother deciding to keep/not treat such a child seem very low. Knee-jerk reactions are still a thing, and I think that the vast majority of people will decide against taking risks rather than in favor of it.

    • PDV says:

      There’s an easy reply to the SMBC argument: Make people smarter, healthier, and longer-lived, and let them , who are better-equipped to deal with these problems, figure out what other things should be optimized. I’m reasonably confident that applying this logic any time in the last century would have the arc of our collective moral system stay in approximately the same track, just moving more quickly.

      • Orphan Wilde says:

        The first and only optimization I’d make, given control of everything, would be to fire all the people whose jobs are theoretically optimizing everything. I’m not smart enough, I know for a fact none of you are, and the fact that you (the royal you, not the personal you) think you are just proves you’re too dumb to know just how dumb you are.

        Which is to say, anybody who wants to be in charge, under no circumstances should be allowed to be.

        As for the arc of our collective moral system, well, getting there faster is only a good thing if it’s going to a good place, a question we, in the middle of that arc, are in a uniquely bad position to judge.

        • Stefan Drinic says:

          We’re talking about the people who’d optimize the gene pool for whatever genes would be deemed optimal here, as per the comic I linked.

    • Gbdub says:

      “most nerds don’t chew off body parts in order to feel less so we can cure one and not the other’, but I don’t buy this as an argument, becauuuuuse

      – People aren’t going to differentiate between things on the autism spectrum.”

      On the one hand, you assert that no one will differentiate between anything on the autism spectrum and “curing” autism will necessarily mean eradicating nerdiness. On the other hand, you, and pretty much everyone else in this thread, is already differentiating pretty well (of course we should cure hand chewing, of course we shouldn’t criminalize quirky).

      And we already do this in society – consider myopia, a mild disability. LASIK is a pretty good cure, but we don’t have a problem with people who prefer how they look in glasses wearing them. Heck, you can leave your vision totally uncorrected if you prefer, as long as you don’t try to drive. We have pretty good prosthetic feet, but if a guy with no feet prefers a wheelchair we’re ok with that. We have pretty good breast implants, but we don’t force them on people post-mastectomy.

      I mean, we seem to be generally getting more and more tolerant of various quirks and unusual preferences – why do you suppose that would suddenly reverse once we have a cure in hand for autism?

    • David Kinard says:

      But genetic engineering for transhumanist purposes is going to be a long, slow process. Of course, it has enormous downsides if put in the wrong hands. Which is exactly why people need to start talking about the ethical goals of genetic engineering. If ethical people don’t do it, unethical people will. People are very opposed to it generally because they fall for the naturalistic fallacy that human are supposed to be a certain way, and separate genetic engineering from every other attempt to improve.

      Outlining a goal for genetic engineering, which done correctly would be about both improving the subjective experience of metahumans and expanding it, is important, or else all the important research will be done by governments with sketchy motivations.

  74. Mark says:

    There are disability advocates who also raise objections to curing, e.g., deafness. The argument, as I understand it, is that the deaf experience is not merely equivalent to the hearing-abled experience E minus something, and therefore strictly worse than E, but is instead more or less incomparable to it; and, moreover, that forcibly curing deafness is culturally imperialistic, kind of like kidnapping Amazonian infants so they can be raised in a putatively superior industrial civilization.

    Since deafness doesn’t engender the sort of unrelenting hellishness and dependency that severe cases of autism do, I’d be interested in hearing your thoughts on the matter. (I myself am tentatively in favor of eradicating deafness in children, even at the real and regrettable cost to deaf communities. But then you have Two Worlds Collide-style issues that result from that…)

    • Scott Alexander says:

      I think I agree with you – curing deafness seems like probably a good thing, but deafness doesn’t seem to cause suffering to the same degree autism does so the issue bothers me less.

      Also, non-deaf/non-autistic people totally brought this problem on ourselves by mistreating deaf/autistic people so badly that they had to form their own insular understandably-paranoid subcultures. Maybe if we stop mistreating them for a few generations those will become less of an issue.

      • Peter says:

        The subculture thing: ISTR there’s the term “D/deaf” where “Deaf” means “part of the Deaf community” and “deaf” means “has hearing loss”.

        With autistic spectrum conditions; there’s an adult autism social group that I used to go to, and there was this convention I went to once, but I never really got into the whole explicitly-autistic thing. There are lots of subcultures though like various nerd/geek etc. ones that aren’t explicitly about that and which I think are probably majority neurotypical (certainly majority not-diagnosed-ASD), but quite a large part of that majority have more autistic traits than the general population average. I find myself identifying with those subcultures, not with autism-specific subcultures, and certainly not activisty ones.

        There are also some other groups which surprisingly turn out to be rich in people on the spectrum – there’s a trans* support/social group I go to where there’s at least two other regulars with Asperger’s diagnoses – there have been some events where the presumed-to-be-neurotypicals have been in the minority.

      • Murphy says:

        I don’t think the subcultures are just a response to abuse.

        if you’re deaf then drinking buddies who all sign as well and have a lot of shared experience make sense.

        If you’re somewhat autistic other somewhat autistic people can be a lot less stressful to be around because they don’t require you to make eye contact all the time, don’t get pissy if you don’t look at them while you talk while again, sharing more of your own subjective experience of the world.

  75. komponisto says:

    I remember Paul Nurse explaining, on one of the episodes of the Charlie Rose Brain Series, that psychiatric disorders could generally be regarded as misfiring or extreme versions of normal (i.e. non-pathological) psychological phenomena. Depression as an out-of-control version of ordinary sadness or grief is one example; another is that schizophrenia allegedly involves the sort of mental processes that normally characterize dreams.

    In other words, most mental illnesses are possibly “spectra”. If we’re not worried about a cure for schizophrenia stopping us from dreaming, maybe we shouldn’t be so worried a cure for “autism” depriving us of our Alicorns, Ozy’s, etc. (On the other hand, perhaps my modus ponens is your modus tollens…)

    • David Kinard says:

      I’m not so sure about the depression thing. One problem is that depression is also one of those things where a huge spectrum of phenomenon get lumped together.
      Severe depression, in my experience, really isn’t anything like sadness, or a more extreme version of sadness. That might describe the melancholic subtype of depression, but I’m not sure.

  76. Adam Casey says:

    Thanks very very much for saying something I was worried I was a-bad-person-who-must-be-shunned for thinking. As so often.

  77. Nathan says:

    Abortion derail incoming. Skip if you don’t want to go off on this particular tangent.

    So… I get that Scott’s perspective is that “sentience” meaning some mixture of intelligence and/or self awareness is what grants a being a moral right to not be killed. I get that he says “Yes, an unborn human child is in fact an unborn human child. But it’s still totally okay to kill it because it’s not very intelligent yet and that’s the thing I care about”. I very much don’t agree with it, but I get it.

    But surely the expected future sentience of a being matters too? Imagine a wizard turns you into a chicken, but only for 24 hours. Is it more wrong to kill and eat chicken-you during that 24 hours than any other chicken? I think yes. Or suppose two people are in comas, but one is highly likely to make a full recovery while the other is going to remain a vegetable. Is turning off the life support for both of them the same?

    So shouldn’t the fact that a fetus will grow into an adult person impact the relative value of it vs a cow?

    (The same argument applies to a fertilized egg, yes. It does not apply to a sperm or an unfertilized egg – without the conception, they aren’t going to grow into anything)

    • Anon says:

      “without the conception, they aren’t going to grow into anything”

      This is a weird distinction to make, for a utilitarian, equivalent to “do you pull the lever (and kill one person), or do you leave it as it is (and kill five)?”

      There isn’t this strong distinction between action and inaction. If you have a moral obligation to cause potential people to exist, that applies just as much to unfertilized eggs as it does to fertilized ones.

      (FWIW, I think the relevant distinction between wizard-chickens and fetuses is that wizard-chickens were, at some point, actual people.)

    • Wrong Species says:

      I don’t see why it doesn’t apply to sperm or an unfertilized egg. Yes, without conception they aren’t going to grow in to anything but your original point was about expected future sentience. That sperm may not be anything right now but it still has potential.

      • Nathan says:

        The expected future sentience of a sperm is not very high at all. We’re talking about what we can rationally expect, not what is potentially possible. Yes, combined with an egg, a sperm can grow into a person. But the vast majority of sperm are never going to combine with an egg.

        To return to the wizard chicken comparison, that would be kind of like saying that if a wizard can turn a person into a chicken he can probably turn a chicken into a person so we can’t kill any chickens.

        (I don’t actually believe that ‘expected future sentience’ matters fwiw, I take a much stronger pro-life position. Just trying to question Scott’s position on its own terms.)

        • RCF says:

          Most conceptions don’t result in a live birth. How likely does becoming person have to be? Is it okay to destroy frozen embryos, since they’re probably not going to grow into a person?

          If you use contraception over several months, you’ve prevented a potential human from coming into being. Is that immoral? If decreasing the expected number of humans is immoral, then a few months of chastity is more immoral than an abortion.

          “To return to the wizard chicken comparison, that would be kind of like saying that if a wizard can turn a person into a chicken he can probably turn a chicken into a person so we can’t kill any chickens.”

          In this hypothetical, can he create a new person out of a chicken, or can he turn any chicken into the person he turned into a chicken? If the former, then it’s not wrong to eat a chicken because no previously existing person is affected. If the latter, then it’s not wrong to eat a chicken (even the one that was created out of a person), because because there’s no clear sense in which the chicken “is” the person.

          I don’t think that wizards turning people into chickens is a very useful hypothetical, as we have to assume such wild counterfactuals that our normal reasoning doesn’t apply.

          • Zippy says:

            How likely does becoming person have to be?

            In this hypothetical moral framework– which I’m fairly certain no one actually uses¹ — I’d imagine that the wrongness is directly proportional to the likelihood. I.e., killing 1 person is 1 wrong. Killing 2 people is 2 wrong. Destroying something that had a .5 chance of becoming a person is .5 wrong. (This assumes we don’t care about lifespan)

            This hypothetical moral framework runs into problems where you have to factor in all the children the thing would have had had it turned into a person. I sometimes wonder how the numbers would work out, but then I remember I don’t care.

            1: I should not make this prediction; I’m also fairly certain that there is a rule like Rule 34 but for moral philosophies. Also many people claim to have this moral system if they have a dislike of abortion but don’t quite know why.

        • David Kinard says:

          Yes, this is the thing about the pro-choice position I find puzzling. Pretty much every argument for pro-choice also works for infanticide, but people have very different moral views on that.

      • keranih says:

        I don’t see why it doesn’t apply to sperm or an unfertilized egg.

        Because if you leave the egg or sperm alone, and do nothing to it, the cell eventually degrades, ceases functioning, and dies on its own, having done everything it was designed to do (failing the opportunity to combine into a conception). The potential of an unfertilized egg is that of an non-cancerous cell on the wall of your gut – eventually, it un-becomes. Your intervention will not change this outcome.

        If you leave the conception alone, it becomes an adult human being. Your intervention will (largely) not positively affect this, but you can destroy it.

        (For what it’s worth, I used to hold to the idea that unfertilized eggs & sperm were a sub-class of ‘potential life’ – and they are, I still suppose, in the way that a non-cancerous cell is. Now I see the possession of a full set of DNA and the mechanisms needed to grow into a thing that can write rap lyrics and sew patches in pants and stand up and say “Here I stand” without any intervention from any person to be a different thing than a cell on a gut villi or an egg or a sperm.

        • RCF says:

          Besides the attempt at an omission/commission distinction and teleogical terminology, there’s the fact that an embryo does in fact require the intervention of person to become a person.

        • Earthly Knight says:

          I am given to understand that parents who believe their infants will germinate into adults if left to their own devices are commonly charged with murder.

    • Anonymous says:

      Imagine a wizard turns you into a chicken, but only for 24 hours. Is it more wrong to kill and eat chicken-you during that 24 hours than any other chicken?

      Sure. But this is because killing the chicken also kills me, a human who wanted to keep living.

      Suppose a wizard points at a chicken and says, “in 24 hours, if this chicken is still alive it will turn into an adult human.” I see nothing more wrong with killing and eating that chicken than any other chicken. No human’s preference to live is being violated. If the human never comes into existence, it is never harmed. And nothing has a right to come into existence.

      • Anonymous says:

        I see a problem with this. Imagine you learn that the utility of everyone born from tomorrow onwards will be the lowest it could possibly be. Life will be the absolute worst experience imaginable for them – the entire crop of future humans. Imagine you also learn that if you violate the preferences of one currently living individual by the tiniest amount imaginable, then not only will the everyone-is-miserable disaster be mitigated but it will be reversed: everyone born from tomorrow onwards will have as high a utility as it is possible to have.

        Should you violate that person’s preferences? It seems to me that the answer is quite clearly ‘yes’. I can also think of an example in the opposite direction, though, where concern for current humans clearly outweighs concern for future humans, despite the utility of the latter being higher. Which is one reason I doubt the validity of the straightforward, ‘obviously correct’ answers that utilitarianism purportedly gives.

        • Anonymous says:

          Should you violate that person’s preferences? It seems to me that the answer is quite clearly ‘yes’.

          I agree. I don’t think this contradicts what I wrote above. I’m not claiming that future people’s lives have no moral weight. I’m claiming that we have no obligation to bring specific new people into existence.

          I think if someone is going to come into existence, you have an obligation to not make their future existence miserable. To borrow from another thread, this is why women have a moral obligation not to drink a lot of alcohol during pregnancy.

          But if by some action you can cause someone to come into existence who otherwise would not have existed, you don’t have an obligation to bring them into existence. For example there is no obligation to have a lot of children. This is why it’s OK to kill and eat the chicken who otherwise would have turned into an adult human.

          I can also think of an example in the opposite direction, though, where concern for current humans clearly outweighs concern for future humans, despite the utility of the latter being higher.

          This is a tangent I guess, but I’m curious what scenario you are imagining here?

          • Anonymous says:

            Okay, that I can agree on.

            “This is a tangent I guess, but I’m curious what scenario you are imagining here?”

            Long version: you have a magic button that will kill a billion people. It will also cause there to be an extra billion people total born in the future, whose utility will be identical to the billion you killed, except for one person, whose utility will be higher by an amount equal to the smallest unit of utility possible. Should you press the button?

            Short version: should you kill all the sad people and replace them with marginally less sad people?

            The answer to both questions, in my view, is ‘obviously no’. I think this is true even if you account for things like “what about everyone who will miss them”.

          • Anonymous says:

            should you kill all the sad people and replace them with marginally less sad people?

            Of course we agree that you shouldn’t. But I think you can agree with this and still be a utilitarian. When you are totaling up the “goodness minus badness” of a particular course of action, just make sure you account for the high badness of deaths of people who don’t want to die.

            That is, define utility as a function of the entire future history of the world rather than as a function of the state of the world at some particular future time.

        • nohbdy says:

          My preference that all future humans not be miserable is greater than the tiniest amount imaginable. If I were a utilitarian, that would justify violating a living person’s preference by the tiniest amount imaginable. Your thought experiment could be made more inconvenient for the utilitarian by specifying increasingly large violations and stipulating that the current population, on average, actually wants all future humans to be miserable, and that this preference is caused by the current population’s values and not some mistake of fact or failure of analysis. This would prevent the utilitarian from justifying the violation on the basis of humanity’s CEV. In fact, the utilitarian might choose to bite that bullet.

          I, however, am a nihilist. To justify violating the preference of the living humans, it suffices that I, personally, think the future where all humans are miserable is aesthetically awful.

    • sweeneyrod says:

      Only a small percentage of fertilized eggs turn into babies. A (even smaller) percentage of unfertilized eggs turn into babies. What criterion are you using to decide that the first are destined to grow into humans, but the second aren’t? What is the qualitative difference between the cases?

    • M.C. Escherichia says:

      > Imagine a wizard turns you into a chicken, but only for 24 hours. Is it more wrong to kill and eat chicken-you during that 24 hours than any other chicken?

      The question is under-specified. What is actually happening to my mind during this time? For the wizard to restore me 24 hours later, my mind-state must have been stored somewhere. Apparently you imagine it being stored in the chicken. It’s the destruction of my mind-state that matters, so there is no difficulty in saying it’s wrong to destroy the vessel that is (somehow) holding my mind.

      If, on the other hand, my mind is stored on the wizard’s USB stick, and he has these awesome powers over matter, then he won’t even need the chicken to restore me later. The chicken is then irrelevant. Erasing the USB stick though is murder.

      > Or suppose two people are in comas, but one is highly likely to make a full recovery while the other is going to remain a vegetable. Is turning off the life support for both of them the same?

      Minds can be paused; e.g. dreamless sleep is essentially this. But most paused minds will restart. A mind that can never restart is already lost, already dead. Whereas killing the mind that will restart later is like killing a sleeping person. Again what matters is the destruction of minds that already exist.

    • Earthly Knight says:

      But surely the expected future sentience of a being matters too? Imagine a wizard turns you into a chicken, but only for 24 hours. Is it more wrong to kill and eat chicken-you during that 24 hours than any other chicken? I think yes. Or suppose two people are in comas, but one is highly likely to make a full recovery while the other is going to remain a vegetable. Is turning off the life support for both of them the same?

      These analogies are bad, because in both cases you have a being who was previously sentient temporarily losing her sentience, which does not describe a fetus. It matters that both the chicken and the coma patient have an established identity and relationships, and a suite of preferences, hopes, and plans that they would like and will be able to see fulfilled. The appropriate question is whether it is permissible to slaughter a chicken which has always been a chicken but will presently be transformed into an (adult) human being. Prescinding away from my views on killing animals, I’m inclined to answer in the affirmative.

      Edit: I see that anonymous already made this point above. Sorry for the redundancy.

  78. Tracy W says:

    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’m rather baffled by how you think this will work. I thought the point of a basic income was that people wouldn’t have to do boring jobs for low pay. Is there that large a supply of people who would rather assist someone autistic for a small addition to their annual income, and do so reliably?

    • Jon Gunnarsson says:

      Why do you assume it would be a small addition to someone’s annual income? Any remotely realistic basic income would be much lower than the salary of a full time nurse. And that nurse would receive the basic income plus the salary (and probably pay much higher taxes, but the bottom line would still be much more than just the basic income).

      I see a diffferent problem with Scott’s argument here: a basic income would be very unlikely to cover the costs of someone who needs institutional care, at least if we’re talking about the foreseeable future.

      • baconbacon says:

        The amount an otherwise unemployed autistic person could pay thanks to a UBI would be limited by the UBI. If UBI is low how can an autistic person afford a nurse? High functioning autistics could either earn enough to supplement or have requirements low enough to need only relatively low cost supplemental care, but the extreme end of autistic people have much higher and more expensive needs.

        • Jon Gunnarsson says:

          A nurse can serve more than one patient. Also, many autistic people would receive support from their family.

          But as I wrote above, people are unlikely to be able to afford institutional care on a basic income alone.

          • baconbacon says:

            One nurse can rarely handle more than 2-3 patients with long term care needs. Before you doubt this remember that a full time job is 2,000 hours a year, which leaves 6,760 hours a year that their patients are unsupervised (by the nurse). Even if one nurse could handle 10 of them at a time (a wild stretch) you still need someone on weekends/holidays/nights.

            There is a reason that our elderly are stuck in awful situations- providing long term care for an individual is crazily expensive. Paying someone the equivalent of $5 an hour for 24 hour care comes out to ~$44,000 a year- without any capital expenses, emergency expenditures, medicine etc. Institutional care is the only way to minimize enough expenses to make it affordable for your typical family for any one with needs that exceed an hour or two a day.

          • Who wouldn't want to be Anonymous says:

            @baconbacon

            It might be interesting to note that this is almost certainly the exact reason that home care aids for the elderly are exempt from federal minimum wage rules.

            I don’t think it is used very often in practice, though.

          • keranih says:

            It might be interesting to note that this is almost certainly the exact reason that home care aids for the elderly are exempt from federal minimum wage rules.

            Were exempt. According to NPR, that changed today. (Or yesterday.)

          • Who wouldn't want to be Anonymous says:

            Wait, really? Damn you Congress, you can’t leave things alone long enough for random factoids to be current the first time I try using them.

          • RCF says:

            BTW, AIDS is a disease. People who help other people are aides.

      • Tracy W says:

        The autistic person is also using their basic income to pay for luxuries like food and water and a place to sleep indoors. How much is left over for paying a nurse? Who must then pay taxes on that income to fund the UBI.

    • magnetick says:

      Sorry to be flip, but I think they’re called parents (and even parents end up paying for the privilege!). This part of the piece stuck out to me because it sucks that somebody disabled has to use up their sweet sweet UBI money on boring basic services that others do not. Though, I can’t really see how that can be helped.

      The optimistic part of my brain says that once a good UBI scheme is in place, maybe the costs of caretaking will be reduced and it’ll come out in the wash, but the pessimistic part thinks that is definitely not possible.

  79. Rachael says:

    I agree with you (apart from the abortion part, but that’s secondary).

    Autism campaigners seem to be using the fallacious argument:
    * Quirky shy nerds are autistic too
    * They don’t need curing
    * Therefore autism doesn’t need curing

    Collapsing autism and Asperger’s was probably a mistake. Keeping the distinction would make the above fallacy more difficult to commit.

    I don’t think the average person’s idea of an autistic person is someone nonverbal and violent, not any more. Maybe 30 years ago. But now it’s the quirky nerd. Because the former are hidden away in institutions, and the latter are visible and talking about how autistic they are.

    • Peter says:

      The taxonomic issue is pretty messy. Part of the issue with “Asperger’s” is that it was defined as distinct from HFA, with the key distinction being that in HFA you had a “language delay” and in AS you didn’t. There appear to be some other differences in traits… maybe – for example AS tends to be associated with higher Verbal IQ than Performance IQ, and vice versa for HFA. The studies don’t always replicate nicely, and at any rate it’s all “we took a big group and found a statistically significant difference” – intragroup variation is stronger than intergroup variation. Now if you look at the traits that correlate with the AS/HFA distinction, I seem to be pretty firmly on the AS side, but there seem to be a lot of people who are “somewhere in the middle”, and apparently it had been fairly common for some people to say AS/HFA and not to bother trying to tell the two apart.

      Finding the HFA/LFA distinction is tricky too. Activisty types don’t like it, because “High Functioning” all too easily collapses into “this person has no problems that require support or anything like that” and “Low Functioning” too easily collapses into “this person has no abilities”. You could draw a line at some arbitrary IQ threshold but that has all of the threshold problems.

      Thing is, a spectrum is pretty good for representing reality but is less good for reflecting how people like to think about things; people like nice clear categories that are internally homogeneous with regards to the traits of interest…

      (Except I think that opinions about cure are much less correlated with level of impairment than some people think, but I think that’s for another comment)

      • ozymandias says:

        Also the problem with drawing a line at an arbitrary IQ threshold is that people who have high IQs can still be eplieptic self-injuring violent people with gastrointestinal issues. For that matter, you could probably have a high-IQ nonverbal person, even though at that point testing IQ gets a little difficult.

        • Peter says:

          Oh yes, years back I remember reading about someone who was sufficiently impaired that she couldn’t be left alone in a room with a hot kettle, and had lots of other issues – but was perfectly capable of writing some very sharp legal letters. At the time I half-wondered whether there should be a category, XFA (“Cross-functioning autism”), for people like that, but these days I worry that that would be adding to the problem rather than helping with it.

          • ozymandias says:

            See, that is why autism rights advocates disapprove of functioning labels. Because to a first approximation “people who are perfectly capable of some things which are very difficult but incapable of things which seem easier” is all autistics.

          • David Kinard says:

            But isn’t there a significant distinction to be made in terms of degrees of impairment? You had mentioned that many of the now high functioning autistics were low functioning in childhood. It seems like there would be quite a bit of survivor bias there. I.e, assuming the majority of the severely impaired are potentially high functioning if given the right treatment, versus those who go from low to high are a subgroup who is over-represented since they are capable of articulating their views.

    • Scott Alexander says:

      I agree that argument is a common failure mode, but I don’t think the really serious autism campaigners are using it. A lot of them are formally nonverbal or otherwise very autistic. Temple Grandin is certainly not just a quirky nerd who likes trains.

      I think if that misunderstanding were the extent of our difference this would all be a lot less serious than it is.

      • David Kinard says:

        It’s worthwhile to note that Grandin is apparently also in favor of “curing” those severely disabled.

  80. Berna says:

    I have an autistic friend. She’s very high-functioning; I’d not even noticed anything special about her until she wrote about it on Facebook, she has a job she likes and lives with her boyfriend, and before that by herself. She says she’d flipping *love* a cure. And it’s not because of the way she gets treated, but because of the overstimulation, the difficulty of telling what emotions others (or even she herself sometimes) are experiencing and the PCOS that goes with it.

  81. keranih says:

    I think this is a very useful article for opening up discussions of the tensions between the individual and the society – between my need for liberty and self determination, and of society’s to impose uniform rules and to urge predictable useful behavior from each person. For that, many thanks.

    (I think Scott is entirely offbase, if not completely inaccurate and wrong, concerning the relative worth of cattle and people, and concerning the social utility of on-demand abortion, but wow are those major derailers. I am going to try very hard to not engage on those.)

    There is a tension between ‘do as you see best’ and ‘accept the ethical guidelines of the group so that the group can function better.’ I think both are poisonous when taken towards the extremes – and you don’t have actually *get* to the extremes to run into trouble. I think a lot of our internal politics rests on this tension.

    I think Scott highlights this when he mentions GBI in the context of a disease spectrum that includes independent people, people with minders, and institutionalized people. Are these not citizens? When we cut them, do they not bleed? At the first of the month, should they not receive their payment? Is the State required to grant them the BI AND to provide expensive in patient care? Where does the check for the institutionalized get deposited, and who gets to use that money in the mean while? And so forth, which might be dismissed as getting too far down in the weeds, but we are in a regular debate over what rights felons and the mentally ill have.

    It was also very enlightening to realize that yes, inventing a gene treatment for whitening the skin of Africans so that they didn’t look like Negroes was going to be far more likely than society purging itself of appearance-based racism. ..wait. That wasn’t what you meant, was it….

    For me, I think the conflict might also be framed in terms of eyeglasses – I might not want to wear ugly horn rims. No one else is required to buy me fancy wire rims. I am not required to undergo optional surgical correction. Yet unless I do at least one of those things, I may not operate a motor vehicle on the road with other real live humans (and the occasional cow) on it. Throw in flying self driving cars, and we are right back at the ‘easy’ biological cure.

    I think a community-specific consensus on what to treat and what to socially engineer is far more likely to be found than an iron clad principle of justice.

  82. David N says:

    “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.”

    This is where I had to duck out… You did an excellent job driving home the point about how severely autistic people can exhaust even the best trained professionals and suffer despite everyone’s efforts, but then just because some lady is “sure” you’d be cool with that plan.

    • ilzolende says:

      I’m autistic, and if you guys all collectively stop having autistic kids I’ve got to ensure the future existence of people with some resemblance to me somehow.

      I am pretty sure I prefer a world where people like me continue to exist well into the future (I am a person like myself, if you want a very straightforward and morally simple if not easy way to deal with this preference, btw) to the alternative, even if I have to deal with unpleasant stuff to get there. I wouldn’t be excited to need to raise children, but I’m also not excited to have a future happen without anyone like me in it.

      And I’m pretty sure we need to start separating classic autism and Asperger’s in the rationalitysphere again, because I was not an atypically difficult kid.

      • David N says:

        I can’t be on board with that. I’m not sure I can defend it on rational grounds. Aborting a girl because you want a boy, arborting 12 sighted fetuses because you want a blind one, or aborting N “neurotypical” (in quotes because I don’t know *exactly* who that excludes) fetuses because you want one (mildly) autistic one, are, to me, increasing degrees of wrong. I’ll hand in my 100% pro-choice badge at the office.

        While we’re dealing in hypotheticals, we could have the exercise where the desire to “ensure the existence of someone like me” by a long sequence of abortions is reduced to a “likeness” that is absurdly vain and trivial and show there’s a stop where everyone gets off this train. But why bother. You can probably think of a more persuasive example than I can.

        • ilzolende says:

          Oh! The issue here is abortion! I thought the issue was “why are we trusting people to truly want to have autistic kids when we’ve just talked about autistic kids being challenging”.

          I don’t think I’d have to abort a lot of fetuses to get one close enough to autistic. Autism is genetic, IIRC? Surely I have the correct genes for ending up with a high rate of autism, especially with an autistic partner? I’m not insistent about meeting all diagnostic criteria.

          While we’re dealing in hypotheticals, we could have the exercise where the desire to “ensure the existence of someone like me” by a long sequence of abortions is reduced to a “likeness” that is absurdly vain and trivial and show there’s a stop where everyone gets off this train. But why bother. You can probably think of a more persuasive example than I can.

          That’s probably just “resorting to human cloning”, a generally not-approved-of plan.

          And I don’t think it’s vain to want my neurotype to not be eradicated. I’m not planning to have kids of my own except in weird scenarios like this. I expect the general population to contain nonzero quantities of traits that I’m personally attached to, because it’s done that for a while. If someone starts messing with that, I’m going to have to do my part to address it.

          Also, abortion shouldn’t be needed in order to get rare traits: IVF and pre-implantation selection are things you can do. Ignoring any humanitarian concerns, carrying 12 fetuses to the point of being able to do all the desired genetic tests (which is when? IDK) is probably pretty time-consuming and resource-consuming. Most people won’t want to do that (this baseless assertion is pulled from the luminiferous aether, it might be wrong).

      • chaosmage says:

        We have mass market consumer VR coming up in a few months. Nobody knows what new social networks and technologies will arise from that. But VR will certainly make it much easier to control one’s own sensory input.

        VR should make life much easier for autistics. I would not be surprised if they even turned out to be better adapted for it than neurotypical people.

        So I don’t think you need to worry about the future of autism. It should be safer than the present.

      • moridinamael says:

        I don’t think “autism” is regarded as being, like, a scalar quantity. Intelligence is highly polygenetic. Brain structure is highly polygenetic. Autism is at least somewhat polygenetic, in some sense, with complex interaction with environment, possibly.

        Most really smart people I know are unusual, weird, nerdy, whatever. This is completely predictable. Any genetic deviation from an average neurotypical 100-IQ brain is going to by definition cause cognitive and behavioral changes from the baseline. The miracle of somebody like Einstein isn’t that he was capable of highly abstract thought, it’s that he was capable of highly abstract thought while still being completely functional at other human activities. In other words, the genes that provided his “genius” didn’t break the rest of his brain.

        Treating autism as a “scale” ignores this reality. Treating it as a binary is even worse. Nobody here is advocating curing smartness, they’re advocating curing a complex cluster of poorly understood malfunctions that on net lead to greater suffering.

        As a completely separate line or argument: I have heritable disorders. I would excise those genes from myself in a heartbeat. I feel no urge to “ensure that people like me continue to exist well into the future” vis-a-vis these disorders. I’m sure I could make some argument about how these disorders caused me to struggle and the struggle made me more resilient or something, but that would just be justification/sour grapes.

        • “Most really smart people I know are unusual, weird, nerdy, whatever. ”

          Most really smart people are unusual because it’s unusual to be really smart. But your comment about Einstein being unusual in not breaking his brain suggests that you are thinking of something different, and more problematic, than that.

          In which case I disagree. I’ve known quite a lot of really smart people, including at least five Nobelists in my field and (less well) a couple in others. None of them struck me as having in any meaningful sense broken brains, or even as being any odder (aside from high intelligence and different interests that went along with it) than other people.

          I spent a number of summers long ago as a councilor at a camp for gifted children. Off hand, I can only remember one of the really smart ones who struck me as a bit odd along the lines you seem to be suggesting.

          • Marc Whipple says:

            Agreed.

            The ones you notice are noticeable. The ones you don’t, are not.

          • Chalid says:

            Also, successful and secure people of any type don’t have to care as much about social conformity, so they allow themselves to do more unusual things.

          • onyomi says:

            Are there any studies on whether people with high IQs are more likely to suffer with psychological problems (possibly confounded by the fact that smart people might be more likely to seek diagnosis and/or help)?

            My subjective impression has always been that there was a correlation (an arguably comforting notion to me, considering I’ve had some psychological problems), which seems to make sense in that, the same way a 7-foot tall person is more likely to have certain problems, or a dog bred to have an unusually flat face is likely to have certain problems a mutt might not have, someone with one part of them way more developed relative to other parts seems more likely to have problems with that part, even if it is also better at certain things.

            Related, I often feel that the same qualities which make me “smarter” than average also make me more prone to certain problems like, bipolar, anxiety, and OCD: my tendency to be obsessive is a useful trait for learning things, for example, as is my tendency to get strong bursts of energy and creativity, sometimes compensated for by periods of feeling down (I’ve been diagnosed as having a type ii bipolar, though not a very severe case, I guess–depending on who you ask I might be mildly bipolar or just with a tendency to higher highs and lower lows than most, often cycling within the same day).

            But contra the above, most of the famous “tortured” artists like Van Gogh *don’t* actually produce their best work during their darkest periods psychologically, meaning it’s certainly not necessary to suffer mentally in order to be productive/creative. At the same time, it seems clear to me that whatever caused Robin Williams (and Van Gogh, indeed) to commit suicide was probably the other side of the same coin which gave him the manic energy he was famous for.

            But, of course, people of average and below-average IQ also get anxiety, depression, ocd, panic, etc. and we maybe don’t remark on that as much, either because they don’t get diagnosed, or because their suffering from such isn’t a convenient explanation for some kind of weird genius. And of course there are plenty of very mentally healthy yet very smart people, though I think smart people are also, by virtue of their smartness, better able to handle their own mental problems. I, for one, don’t need any psychiatric meds and am pretty psychologically healthy most of the time (at least for the past few several years), but only because I’ve figured out a lot of strategies for keeping myself sane.

          • US says:

            @onyomi:

            “Are there any studies on whether people with high IQs are more likely to suffer with psychological problems”

            Some research has looked at that kind of stuff – a few observations:

            “co-morbid diagnoses of other mental disorders are common among this population. Individuals with Asperger’s are 5.7 times more likely to develop symptoms of depression in comparison to the typically developing population (McHale, Dariotis, & Kauh, 2003; Stewart et al., 2006). The literature suggests that most individuals with ASDs show a desire for relationships, but experience loneliness because their difficulties with social skills often interfere with friendship formation […] higher-functioning adults with greater intelligence and less autistic symptomatology tend to experience more depression, anxiety, social isolation, withdrawal, and peer victimization […] than lower-functioning individuals. This may be due in part to greater social expectations often placed on higher-functioning adults occurring as a result of placement in less protective and more inclusive settings. With higher-functioning adults with ASD often giving the appearance of seeming more “odd” than disabled by their peers, these individuals may be more susceptible to peer rejection, and consequently greater negative socio-emotional outcomes like depression and anxiety. Furthermore, greater self-awareness about peer rejection and “differentness” more likely found in higher-functioning adults with ASD may also contribute to greater depression and anxiety”.

            The quotes are from the book Adolescents and Adults with Autism Spectrum Disorders. As should be obvious there’s some speculation here about mechanisms; not many studies have been done on these topics.

            On a related note:

            “Understanding which variables predict adult outcomes in ASD is a crucial goal for the field, but we know little about what variables predict different outcomes. […] Longitudinal studies of ASD from childhood to adulthood have consistently yielded only two useful prognostic factors for adult outcome in ASD. A childhood IQ score in the near-average or average ranges (i.e., ≥70) and communicative phrase speech before 6 appear necessary but insufficient for a person to access a moderate level of independence in adulthood […] Individuals having these childhood characteristics have widely varying adult outcomes, so exhibiting these characteristics in childhood is no guarantee that a person will achieve adult independence. The predictive utility of other childhood variables has been examined. Findings regarding severity ratings of childhood ASD symptoms have been mixed” (from the same book).

            [Hmm…. Rereading your comment I realize you probably did not mean ‘…in autistics’, but rather ‘in general.’ I’m unfortunately not familiar with that literature..]

      • BBA says:

        I’m barely on the spectrum, and I wouldn’t want there to be more people like me. This world wasn’t made for people like me, and adding more would just create a lot more suffering without good reason.

    • Scott Alexander says:

      This is more of a hypothetical discussion of the moral principle than a discussion of whether such an assurance would be believable.

  83. Mark says:

    Here’s another thought experiment. Supposing we had no cure or treatment for malaria, would you support trying to eradicate the sickle-cell gene?

    • Scott Alexander says:

      I’m confused. If we had no malaria treatment, it would be very important to keep the sickle cell gene around. Are you saying that autism is the extreme version of traits that are very useful?

      If so, I kind of agree! But then the question becomes “How do we keep the useful traits without getting the more serious condition?” I expect this will not be too hard. Just to give a vastly oversimplified model, suppose if you have fewer than ten copy repeats of some gene you’re irrational, if you have between ten and twenty you’re a good logical thinker, and if you have more than twenty you’re autistic and nonverbal. Then we can talk about maybe trying to keep people in the ten to twenty range.

      Real autism is no doubt a zillion times more complex, but I think the same principle might apply.

  84. mersenneprime says:

    “somebody develops technology that can change your brain type during adulthood”
    So my first reaction was “this sounds cool and I want to try it”, and my second reaction was “wait but flipped!me *isn’t me* so they might have a different opinion that makes it impossible to decide objectively what is better”
    …which ends up sounding awfully like the arguments surrounding wireheading…

  85. Alicorn says:

    I mostly agree with you about most of the positions you put forward here (although my spin on X-Treme Pro Choice differs). I want to add my voice to ilzolende’s point about how desperately inadequate our youth rights situation is to dealing with communication-capable neurodivergents who have conditions they want to keep, notwithstanding my wrenching sympathy for people whose children have conditions that the parents are not capable of happily shouldering. And I want to mention two other things.

    First, you draw a lot of attention to the fact that autism is comorbid with a lot of things. Since these things can occur independently and autism can occur without any given one of them, is there any reason to believe that a “cure for autism” – in whatever form it might appear – would be an effective way to deal with the harms of these comorbidities? If autistics are depressed and it’s very sad that they’re depressed, curing autism rather than taking it as another reason to (I think uncontroversially?) cure depression seems like an odd move. The extent to which it would be good to cure autism is significantly tied to the extent to which autism alone is working mischief, if a post-cure person would still have seizures or what have you.

    Second, while for more or less the reasons you put forward I would *love* to make a prenatal cure or prevention available, I think that you’ve bewilderingly understated (insofar as you have stated) the assault an involuntary postnatal cure (as implied in last non-footnote line) would represent. I cannot contort my mind enough to identify as part of my personal continuity some post-the-cure-is-released-into-the-air-or-something person inhabiting my body wearing a wool turtleneck and popping Wint-O-Green lifesavers into my mouth. Like, okay, that’s sure somebody, maybe my husband would still love her so he’d be fine and maybe on balance I’d even volunteer to make the sacrifice to help this category of people in such dire straits, maybe, maybe, but I want a fucking *statue* for it and I do not see plans for a statue in this post.

    • I don’t think anyone supports, or anticipates as a likely outcome, the involuntary curing of existing autistic people who aren’t a) institutionalized, b) legal minors, or c) dependent on government benefits for survival as a result of their disability. So you’ll be fine.

      (Well, okay, some people probably support this but their moral frameworks are defective, and some people probably anticipate this but their conspiracy-theory detectors are defective.)

      • Alicorn says:

        Yes, I’m talking about the thought-experiment all-or-nothing version. (Or, alternately, an invented-when-I’m-twelve version or an invented-if-I-were-just-slightly-less-functional-and-maybe-a-dude-to-make-housewifery-impractical version.)

    • Tracy W says:

      On the last point, isn’t this a common oddity of life? Most of us have family histories with some misery in them – for example if there had been an easy cure for schizophrenia in the 1960s my brothers and I would probably never have been born. So I’m in the mental state of being glad we exist and also thinking said cure would have been a very good thing.

      • Alicorn says:

        I think it’s very different to talk about who would be born than to talk about who would, as an already-person, be altered. I don’t think you understood me.

      • David Kinard says:

        But any type of change to society will change who is born and who isn’t…. there is no “plan” of the right way for history to go. What about the people who weren’t born because if they had a cure, some other chain of events would have happened leading to different people being born?

    • ilzolende says:

      Thanks for bringing up the continuity issue, I was taking it as a given for “why nobody wants certain types of cures” and not remembering to mention it. Depending on what a cure looked like, it might not be equivalent to death-plus-a-new-person-existing, but I’m not sure you can really call it a cure.

      You won’t need to restrain me to brush up my executive function or distribute a version of Google Glass with face and emotion recognition or even to increase my tolerance to undesired sensory stimuli a bit. (Liking those stimuli, on the other hand…)

      An Ilzo focused on socializing to the extent of tailoring her (if we’re coercively curing autism, why not cure transness while we’re at it) patterns of interacting with people to optimize for being likable to everyone, whose favorite hobby was going clubbing, who couldn’t read more than a couple hundred words per minute, who could memorize an address book of names and faces but not a single sonnet, who could dance but couldn’t sing, who loved exploring deep ambiguous symbolism of litfic and couldn’t stand STEM fields beyond what was strictly necessary for her would be a perfectly nice person (if not the sort of person I would want to be friends with). That person would not be me. I, in fact, like myself better than a perfectly neurotypical me.

      Being coercively required to donate organs I needed for survival would be similar, except that in that case there would be more lives saved and the users of my body would already have existed in advance. Also, it would be theoretically possible to compensate me with cryo or something. Whereas in the case where someone else with my memories ends up running around with my body, I probably don’t get to so much as write a will before Fully NT Ilzo spends GiveWell’s and ASAN’s (and maybe some more radical group’s, in such a scenario they’d be bound to pop up) money on a used car. (Fully NT Ilzo is probably not the sort of person who would understand what a precommitment is, much less be willing to follow through with mine.)

      (I’m not personally threatened by a coerced cure, as unless synthetic oxytocin is more than just “increases trust, might temporarily decrease nonsocial cognition, got to skip animal trials because prior use for induced labor, keep it the – away from me” there’s not anything that would be developed before I turn 18. And it sounds like Turing Pharma’s business model is “make stuff really pricey”, so that’s another obstacle to oxytocin. And I could probably get myself to a wide variety of locations in the US on short notice if that were really necessary, which it won’t be.)

      • Rebecca Friedman says:

        Why does an NT version of you have to enjoy clubbing, be unable to sing, and be unable to memorize sonnets? Honest confusion here – I really really really don’t want to offend you, I just don’t understand. I’m NT (as is probably obvious from the question), but I can memorize sonnets (and enjoy doing so) and sing (not super well, but that’s not a function of my NT-ness; most of the people I know who sing better than me are also NT), and have no interest in clubbing (though I do enjoy dancing). Am I misunderstanding…? Sorry!

        • ilzolende says:

          I am not at all offended, and I don’t think you’re misunderstanding me. (Well, obviously you didn’t get all of my intended meanings from the other post, or you wouldn’t be asking me questions, but you haven’t drawn bad conclusions.)

          A not-meeting-diagnostic-criteria version of me could essentially still be me. They would be pretty darn autistic, though, just not quiiiite enough to meet diagnostic criteria. (Many of my family members have the more desirable parts of autism.)

          A fully neurotypical version of me, that wasn’t “Ilzo, now with added executive function and emotion-reading skills!” would be pretty drastically different from me. Probably not in all of those ways, but my memorization skills are autism-linked, my hyperlexia is autism-linked, and lots of other traits I like about myself are autism-linked.

          It is possible to have lots of these traits and not have autism! But since I’m autistic and the traits are autism-linked, it seems to me like a cure would reduce the extent to which I exhibited them. If people’s idea of a cure would get rid of comorbid seizures or gastrointestinal issues or whatnot, despite those being possible to acquire without autism, a cure by that standard would not merely drop my autism levels just below diagnostic standards, it would affect other autism-linked traits as well.

          • Rebecca Friedman says:

            … Huh, OK. That makes sense. Thank you very much!

          • Meredith L. Patterson says:

            FWIW, my solution to wanting “Meredith, but with more executive-function and emotion-reading skills!” has been to train those skills. It’s slower going for me than it is for neurotypicals, but there’s a lot of material out there in the Getting Things Done vein that can still work. Usually I have to hack it a little to get around autism-linked obstacles; this is hard to generalise since those are always so personal, but happy to discuss the concept further if you’re interested.

            For emotion-reading my approach has been more of “treat hyperlexia as a superpower and act accordingly.” There is an art to asking people questions that encourage them to share their feelings, and if my goal is to get that information, I don’t really care whether I obtain it nonverbally or verbally.

          • Anonymous says:

            there’s a lot of material out there in the Getting Things Done vein that can still work. Usually I have to hack it a little to get around autism-linked obstacles…

            Please, elaborate.

        • HlynkaCG says:

          Because it seems NT in this context is the disease.

          The real question you should be asking is why are we trying to “cure” autism rather than make everyone else more autistic?

          • David Kinard says:

            This gets back to the “high functioning” versus “severely disabled” thing. I’m all for trans-humanism. Why not go for the best of both worlds?

      • Deiseach says:

        Why do you think a non-autistic version of you wouldn’t be interested in STEM fields? Or unable to sing? I’m the odd one out in my family for not being able to sing/play an instrument and being hopeless at maths, and as I’m banging on, I think we probably fall into the Asperger’s end of the spectrum.

        For my part, reverse the “deep ambiguous symbolism of litfic and couldn’t stand STEM fields beyond what was strictly necessary for her” to “love maths, hate literature” and okay, I’ll run screaming into the night 🙂

    • Scott Alexander says:

      Regarding comorbidities: I agree that if you cured every single problem associated with autism, but left some sort of core of non-problematic autisticness behind, that would be the sort of win-win situation I end by talking about, and that this is a desirable outcome. But when I think of “autism cures”, I think of germline genetic engineering – I really doubt anything else will work – which would solve everything with one fell swoop. That is, I am more optimistic about someone inventing germline genetic engineering (or something similar) for autism, than I am about people inventing good cures for seizures and cerebral palsy and tuberous sclerosis and intellectual disability, etc, etc, etc.

      You’re right that I don’t think much about postnatal cures for two reasons. First, I don’t think they’ll work; autism is really hard-wired into the brain and nothing can reverse that much brain-wiring once it’s happened. Second, if it did, I would expect it to be some pill that you have to take every day. A lot of the moral problems become less pressing if you can try it, go off it if you don’t like it, maybe take an extra dose the day you need to go to a big meeting and then maybe cut back on weekends, et cetera.

      Regarding you not being you – a lot of my experiences about this are shaped by me going on antidepressants to treat my OCD. I had a lot of the same worries – will Scott-without-OCD still really be Scott? Am I sort of killing myself and replacing myself with somebody else? And…well…I can’t say for sure that it didn’t, but it kind of feels laughable in retrospect. That’s made it harder for me to take that argument seriously, although I guess that could just be Evil-Fake-Scott following his self-interest in replacing other people with evil fake versions of themselves.

      (I realize that me not having OCD is a less dramatic change than a severely autistic person becoming totally neurotypical. But I’m not sure it’s a less dramatic change than you loving mints, so maybe our disagreement still holds)

      Do you have the same replacement-intuition about a nonverbal nonsocial autistic person who receives therapy, does really well in it, and ends up as somebody like you? If not, why not?

      (Oh, and I am happy to build you a statue, but it is not very good and will probably be a misshapen lump of clay and you will complain that I made your hair redder than it is.)

      • Alicorn says:

        Doesn’t whether genetic engineering solves the comorbidities depend on why the comorbidities exist? There are identical twins where only one has autism, aren’t there?

        I was “more autistic” when I was a little kid (partly because I hadn’t learned very much yet and partly for control-of-environment reasons like you describe in OP that apply to children as well as the institutionalized) and that wasn’t the direction it went – I was loud and carelessly affectionate and usually had a couple friends even if I wasn’t actually popular – so when I imagine a version of myself who is “more autistic” I don’t imagine a withdrawn person who can’t talk. (…Maybe if my parents were worse than they in fact are?)

        I sometimes go nonverbal, but this is a thing that happens only when I’m really tired, I can always still write and receptive language is always intact, and I can dredge up spoken words if someone impresses on me that I really really ought to, so I don’t think I have a *good* understanding of what perpetual nonverbalness is like from the inside.

        The question’s also a little hard to formulate in the reverse direction because someone who was nonverbal and nonsocial could not share my personal history, while someone who was abruptly cured as an adult could.

        Do you mean “what if the cure only got somebody as non-autistic as Alicorn and not Full NT, would a recipient still be themselves?” Well… take away my control of my environment and I don’t actually work very well. To get someone as non-autistic as me, optimistically you could do nothing more than give them a small emergency spoon reserve for communicating needs so they could if adequately supported and unhindered build themselves a nest (and maybe remove any sensory sensitivities that make being in a body intrinsically unpleasant, if that’s what’s going on). But I’m really lucky that I have so much freedom to build my nest. Like, I get to spend somebody else’s money and eat only ever *exactly* what I want and exercise near-absolute power about who lives in my house. A lot of even quite functional people don’t have and can’t get that. So even a cure that left hand-chewers only as autistic as me would also have to come with institutional solutions or an appropriate number of marriageable software engineers.

        • Justin says:

          There’s a 70% overlap in autism diagnoses among identical twins, and given that the diagnosis is still a subjective one, I’m willing to say the actual rate of the condition itself is much, much closer to 100% and that this overlap only really covers certain perceived behaviours that can be supressed through socialization.

    • Anonymous says:

      I’m not sure what changes if you break down autism into “all the characteristics that are collectively termed ‘autism'”.

      I also think this “oh no, what if I change as a person and I’m not me anymore?!” thing is nonsense, for reasons I’ve given elsewhere in the thread. My reason for thinking this is that it seems to be true of absolutely any change that a person might undergo, whether voluntarily as an adult or involuntarily as a child. Learning to read, for example, destroys the illiterate person that existed before and puts a literate one in their place. Is that an argument against teaching children to read? Does it hinge, as I suspect, on how long it takes – so you wouldn’t want to press a button to transform an illiterate child into a literate version of that same child, but you would be okay with a gradual process of teaching them to read?

      If so, what is the speed limit for change that you are comfortable with, and why?

      • Alicorn says:

        Well, volunteering for things makes a big difference. There are lots of large changes I’d gleefully accept as instantaneous upgrades, including many that would be reasonably summed as “learning”. There are others I would experience as ego-dystonic, incompatible with my goals, unpleasant, in contradiction with my values, impractical for my life situation, or something else, and would not want at any speed. If someone imposes changes on me against my will, this is a problem whether they’re doing it indirectly by exposing me to experiences I resent or directly by releasing an autism cure into the air.

        If you can make kids literate by snapping your fingers, you can also afford to wait until they can agree to this procedure.

        • Anonymous says:

          “If you can make kids literate by snapping your fingers, you can also afford to wait until they can agree to this procedure.”

          Sure. Although, it surely also depends on whether you can make them illiterate by snapping your fingers too. Assuming you can, we are faced with a problem: you have to make a choice for them. Are they going to spend their childhood (up until whatever age we deem them able to choose for themselves) literate, or illiterate? My point is that I don’t think ‘whatever they are born with’ has any magical intrinsic value, certainly not if you more generally believe action and inaction to be morally interchangeable.

          Okay, now imagine literacy works like it does now. Is that an argument not to teach your child to read? After all, once you do, they cannot very easily un-learn to read. (At least, I don’t think so? I don’t expect this is something anyone has ever tried?). On the other hand, once they are old enough to make up their own mind, they have already experienced some number of years illiterate, which they can never get back. Was it worth it? What value is a person likely to get from being illiterate, anyway?

          I think ultimately parents always must make some choices for their kids – and choosing to go with whatever they are born with, or whatever they develop into with no intervention, is itself just one choice among many.

          • Alicorn says:

            I… I don’t believe action and inaction to be morally interchangeable. Does this suffice to explain how thoroughly you’re talking past me?

          • Anonymous says:

            Okay. Since many people here seem to I thought it might apply to you too, but never mind if not.

            Since a child must undergo several years of dependence on their parents before being able to look after themselves, their parents, or whoever else is looking after them, must necessarily make choices for them. Do you agree with that?

            If so, would you also say that, assuming all else is equal, it is better for parents to do whatever choice best resembles ‘not intervening’? And if so, how much value do you place on that aspect? Presumably you would rather a parent intervene to stop a child from touching a hot stove, to take an extreme example?

          • Alicorn says:

            Parents have to make choices for children but have many degrees of freedom in how much attention they pay to their child’s (uninformed, poorly-communicated, but likely still present) desires, and how they form their predictions about the results of what they do.

            Intervene to avoid burns? Vaccinate? Yes.

            Oblige kid to eat food? Yes, because if people don’t eat they starve and this is really bad – but conduct a concerted search for a way to meet nutritional needs in a less aversive way.

            Teach kid to read? Well, if the kid won’t sit still for it – no, do not imprison and torment a kid who doesn’t seem to be up for learning to read. Maybe screen for dyslexia. I can’t think of a thing I’d describe as “making a choice for” a potentially-literate child that contradicts expressed preferences of the child and isn’t at least mildly horrifying. You can’t puppet their bodies to make their eyes track the words on the page, you can’t perform cartoon hypnosis on them to make them care about phonics. You can offer them books and you can bribe and threaten and reason, and some of those tactics need more justification than others.

        • David Kinard says:

          “Exposing me to experiences I resent.”

          I realize you are probably talking about immersion type therapies here, but generally, it is not and should not be an obligation for people to not expose other people to experiences they resent. There are certain types of experiences where that applies, like getting punched in the face. But I think a big problem is when that line is drawn further towards the spectrum of the easily offended.

    • Marc Whipple says:

      While I was discussing this with my wife last night I asserted that if somebody put a button in front of me and said, “Push this button and your daughter will instantly become neurotypical,” you wouldn’t even see me move. (I am not as young as once I was, but I am surprisingly quick.)

      Then I said, “If they said, ‘In effect this button will kill your daughter and replace her with an exact duplicate who isn’t autistic,’ I’d still push it. No delay would be noticeable.” This is my ultimate answer to people who complain about non-voluntary cures. You do what you want about your kid. This is my kid.

      The conversation didn’t go anywhere useful after that. But it’s a data point for you. My daugher is a good kid and I love her. But I am so worried about the kind of life her autism will condemn her to, especially when her mother and I are gone, that I’d push that button even in Case B. Do I have the right to do that? Let me be perfectly frank: I don’t care. I have a responsibility. To protect her from that which she cannot protect herself from. In my opinion, pushing the button falls within that responsibility.

      (In my defense, if this is a defense, if the button-giver said, “Push this button and your daughter will become neurotypical and you will fall over dead,” I still would not hesitate, though maybe I’d take a little time to get my affairs in better order if that wouldn’t invalidate the offer.)

      • DrBeat says:

        You wouldn’t hesitate to push a button that kills your daughter.

        You would do this because you have a responsibility to protect her. Because you have this responsibility to protect her, that makes it okay to kill her.

        I’m not sure that I agree with you a hundred percent on your police work there, Lou.

        • Marc Whipple says:

          I meant this as a response to the “curing someone kills the person who they are” line of argument. You will note the words “in effect.” It was me saying to people making that argument, “Can’t prove you wrong, don’t care.”

          If it literally killed her and she was lying there with an exact replica standing over her corpse being neurotypical, that would be different. For one thing, getting rid of bodies is a lot harder than it seems like it should be. For another, it’s different.

      • Alicorn says:

        I actually wouldn’t have a problem with you button-pushing as long as your child is under threeish, or sufficiently autistic that you couldn’t possibly ask her even if you were making a truly heroic communication effort.

        If we’re talking about, like, an eight-year-old who can talk (even if it’s only on special occasions), let alone an adult daughter, we have a disagreement, and I start wishing it was easy for you to give her away to somebody who’d care to look after her as she is now. (I mean, it doesn’t sound like you think your personal absence would harm her too much…)

        My answer to “you do what you want about your kid. This is my kid” is that this argument stops applying when your kid can be her own.

        • Marc Whipple says:

          I am trying very, very hard and almost entirely succeeding, save for this one-level-up reference, not to come back with a “How dare you” response to that.

          Now that I’ve got that out of my system…

          My daugher is not capable of understanding the question, “Would you like to be neurotypical/not be autistic any more,” let alone the implications of the answer ‘yes.’ (Ironically, if you asked her that, she’d say yes, because she answers any question which she does not understand with ‘yes.’) This is despite the fact that she is reasonably verbal and, in fact, it would probably take most people at least a moment to figure out there was anything wrong with her at all if she initiated communciation regarding something she wanted.*

          So in regard to this question, my kid can not be her own, nor will she ever be able to be her own. In fact, society is ready, willing and able to hold me responsible for her. And that’s fine. Last week I even filed guardianship papers so I can more ably and efficiently represent her interests. But if I am responsible for her, I am responsible for her, and I feel quite ethically justified in saying, “Hell yes I’d push that button.” Because it is a chance for her to live a safer, more independent, more fulfilling life. (You can tell me her life is sufficiently fulfilling, and I cannot, in all honesty, gainsay you. I will still laugh at you for saying it.)

          *E.g., she is quite capable of going up to the proprietor of the comic shop, saying, “I would like some Pop-Tarts please,” handing him a dollar to pay for them, and saying “Thank you” at the conclusion of the transaction. He knows she’s autistic: were she to do this in a place where the cashier didn’t know she was autistic, so long as she didn’t have to make change I doubt they’d think anything of it.

        • keranih says:

          I start wishing it was easy for you to give her away to somebody who’d care to look after her as she is now. (I mean, it doesn’t sound like you think your personal absence would harm her too much…)

          This strikes me overwhelmingly as deeply uncharitable.

          I will also remind you that even for DS children adoption in the USA is not anything like “easy.” (It’s one of the downsides to the longstanding high abortion rate – children needing new homes are in very short demand.)

          • Marc Whipple says:

            Actually I wish it was easy too. Then maybe I could find somebody who was younger, in better health, and more financially secure and for the first time in fifteen goddamn years not spend every other minute of every waking hour worrying about what’s going to happen to her when her mother and I can no longer care for her.

            Yep. That’d be swell. I wish it was easy.

            In fact, I think I’ll go think about how easy I wish that was, and bow out of this conversation. I apologize for entering it: I should have known it would not be helpful. If I have offended anyone, I apologize. I overestimated my ability to maintain detachment.

          • Alicorn says:

            That was exactly my point: it is not easy to match kids needing care with people who want to care for them. That is what the word “wishing” is doing in that sentence.

          • Creutzer says:

            It’s one of the downsides to the longstanding high abortion rate – children needing new homes are in very short demand.

            Wait, you’ve lost me here. Wouldn’t one think that a high abortion rate leads to low supply in children needing new homes? What does it have to do with the demand side?

          • keranih says:

            If Marc’s out, I’m done, too.

            @ Creutzer –

            Thank you for catching that mistake. Yes, children available for adoption are in very low supply, high demand, and the red tape to open a home as a foster or guardian is enormous, making transferring guardianship to someone else (rather than to the State) extremely difficult.

          • @Marc Whipple: FWIW, I appreciated you sharing your viewpoint.

  86. Shirube says:

    I find it understandable that conversation about a cure for autism all comes down to tribe politics. What else would it be? As far as I understand, and as far as I’ve ever been able to find out, autism is a just a wide selection of correlated traits. I’m not even sure how tightly or loosely they’re correlated.

    A cure for being nonverbal I would support without needing so much as a moment’s thought. I would support some forms more than others, but communication is important, and I don’t think you can justify leaving someone without the means to express their preferences on the grounds that they might prefer that you do so. A cure for sensory issues… I’m not really sure what this would mean. Would it change how you perceived different tastes and textures? Would it change whether they were pleasant or unpleasant for you? Would it allow you to function more effectively while exposed to sensations you find aversive? I don’t really have an issue with any of those, but again, I’d like to know what a cure would entail.

    A cure for systemic thinking? I can’t really see that having any net benefit.

    Honestly, I find it ridiculous that the idea of a cure for autism has generated so much controversy. It’s true that autism isn’t a disease. Diseases have clear effects, and often clear causes. Autism is just a useful label for a cluster in mindspace. I don’t think it’s even one that reliably has the same meaning for different people. Whether or not it would be good to have a cure for autism, let alone whether or not it would be good to get rid of it entirely, seems like an issue best confronted once anyone involved has some idea what at least half of the terms in the proposal mean. (Or all of them. Just, you know. Baby steps.)

    • Justin says:

      As clarified elsewhere in the comments here, non-verbal is one of those terms that needs repeated clarification. People who are non-verbal are not necessarily non-communicative.

      • Shirube says:

        When I said that I would support some cures for being non-verbal more than others, I meant that I would prefer a “cure” in the form of other modes of communication becoming available and accepted. There would have been more than no hint of that fact in the paragraph I had originally planned out, but I got a bit sidetracked. I apologize.

  87. Maybe someone has mentioned this, but how weird is it that first Asperger’s is redefined as autism, and now all the Asperger folk are whining that autism isn’t a disease?

    And why are so many people tolerant of such narcissistic jackfoolery? Scott should just tell Dylan to drink a big cup of shut up and be happy he’s just an obsessive nerd.

    • Justin says:

      Methinks you need to look into the reason Asperger’s was ever not defined as autism. Kanner straight-up stole Asperger’s work for himself and projected his own mommy issues onto it and it’s taken decades to get back to where things started.

    • TrivialGravitas says:

      I am strongly skeptical that any of the people claiming this are actually both autistic and out of school (whether high school or graduate school), Asperger’s or otherwise.

    • Airgap says:

      Scott by nature prefers to tell people to drink a big cup of shut the fuck up in a way which is easily mistaken for polite & honest disagreement. Frankly, I admire the subtlety.

      • Well, it makes his posts about four times as long as needed–and I speak as someone who rarely uses one word when a thousand will do.

        Besides, subtlety is one thing. Seriously engaging with narcissistic wankery quite another.

    • LPSP says:

      I agree with everything but your tone.

    • RCF says:

      What is weird about that? It seems to me that one of the primary functions of the term “Aspergers” was to have a term to refer to the “good at math and makes cute hand flap motions” version of autism. As this distinction is devalued, it is not surprising that Aspergers would be more resistant to the idea that autism is a disease.

  88. Wrong Species says:

    I don’t think basic income is going to work for someone who is non-verbal and violent.

  89. blacktrance says:

    Everyone knows nerds are less happy than normals, at least in high school.

    I would be surprised if nerds were significantly less happy than normals in high school. Certainly some of them are unhappy, but in my experience, my nerdy friends and I have not just been happier than the average normal, but happier specifically because of our nerdy traits. Analytical thinking, a lower desire for social interaction, noticing “social reality”, etc, tend to contribute to happiness. So if anything, I’d guess that modifying people to be nerdy would make the population happier on average.

    • PDV says:

      [Citation Needed]

      I think this is at best atypical, and more likely delusional. ‘Noticing “social reality”’ in particular seems to me to be an obvious hindrance to happiness.

      • Whatever Happened To Anonymous says:

        >and more likely delusional

        So they only thought they were happy?

      • blacktrance says:

        Noticing “social reality” gives you the opportunity to create alternatives to it, where normals would think of it as just the way things are.

        • Mary says:

          Of course, by the same token, alternatives can make you unhappy by contrast, whereas if you treated them as “the way things are” they would be a lot easier to deal with.

      • Chalid says:

        I’ve never seen any evidence one way or the other (nor have I looked), but in the absence of evidence I’d think nerds should be assumed to be as happy as anyone else on average. (Assuming the definition of nerd is reasonably rounded and doesn’t select only the “negative” traits, of course.)

        We as a group may believe that we have unique special burdens but most other people believe that sort of thing about themselves too.

        Certainly there are communities and schools where nerds would be worse off but there are others where they are better off.

    • Wrong Species says:

      Quick sanity check: Almost everyone here can reasonably be described as nerdier than the general population. From the comments, do you get the impression that we are happier or more miserable than the general population? Obviously that’s not the scientific way of looking at it but it boggles my mind that you would assume nerds are happier, when everyone else assumes the opposite.

      • Nornagest says:

        I’d say more miserable, but that might be outgroup homogeneity talking, or it might be that nerd culture is more open about being miserable and that leads to availability bias.

      • blacktrance says:

        There’s the selection effect of this being in part a psychiatry blog. The rationalist community is also more mentally ill than average, which contributes to unhappiness, so it could come out behind overall. But the effect of nerdiness is likely positive – nerds who aren’t mentally ill are, in my experience, happier than normals. And there are a lot of unhappy normals, too.

      • Chalid says:

        I’d say the population here strikes me as less happy than the general population if you control for (what I imagine to be the) education, income, etc. of the group, but more happy than the general population. Nerdiness of course increases your education and income.

        I also would guess there’s a connection between age and your perception of nerd happiness.

    • houseboatonstyx says:

      I would be surprised if nerds were significantly less happy than normals in high school. Certainly some of them are unhappy, but in my experience, my nerdy friends and I have not just been happier than the average normal, but happier specifically because of our nerdy traits. Analytical thinking, a lower desire for social interaction, noticing “social reality”, etc, tend to contribute to happiness.

      Anectdata: During my nerdy high school years I was most hours very happy. Being rejected from social things stung with embarassment, but as soon as I got home and opened a book — the world disappeared in hours of happy reading (or geometry or something). Whatever had happened outside, the home time was not affected. The world of the books was always there. Being alone on prom night was just as enjoyable as on any other night

      Then in an anthropology class I read about phatic small talk and body language and rapport and all that, and got hit on the head, and woke up with the social side working and the reading side not working. Stuck on the social side. At home it was like I was still hooked to the outside people, thinking only the thoughts I would be able to say to them. Boring.

      I’m sure the jocks and cheerleaders and other normal kids didn’t know what they were missing. But still their lives must be about status and stuff all the time, no world of home to dive into just any time you wanted. What we nerds liked was always there, always open to us. We could change our experience deliberately, just by which book we opened. We were driving our own car; they seemed just reacting, pulled randomly by outside stuff. We could decide which world we wanted to go into, each hour, no hurry deciding — in what now might be described as a meta state?

    • Who wouldn't want to be Anonymous says:

      In addition to being a huge nerd, I was also an athlete in high school so I got a pretty good look at the two 1980’s-comedy-diametrically-opposed groups in real life. I would say that, in my experience, the nerds and jocks were equally happy in high school. The same for college. (Despite my personally being somewhere between very and extremely unhappy in both.) Having some experience with [high pressure profession], I would say that they are equally as happy as the nerds and jocks I went to school with.

    • Pku says:

      I think it’s a bias caused by the fact that unhappy nerds are very conspicuously unhappy – Most people who are miserable in high school just tend to be quiet and fade into the background, nerds are probably used to being good in class, so when they’re unhappy they try compensating by getting more involved in school instead of less. (I can think of a few other mechanisms for this.)
      This is backed up by what I saw in my high school (though if american schools live up to their reputation they’re probably much worse) – some nerdy people were miserable and some were happy, but most of the miserable people weren’t nerds, they were just quiet types you almost never noticed.

  90. Wrong Species says:

    So would it be more utilitarian to “cure nerdiness”(assuming the net effect would be less innovation and more happiness among current nerds) or keep the status quo? How would you even try to make that kind of calculations?

    • TrivialGravitas says:

      He answered that in the footnotes.

      • Wrong Species says:

        He didn’t answer so much as say “I’m going to arbitrarily put a line somewhere”. I just want to know how a consistent utilitarian would go about finding the answer.

        • JBeshir says:

          I think the position he put the line is not so much “arbitrary” as “based on my assessment of costs and benefits, the benefits become greater than the costs at this point”, which is roughly how someone who is consistently utilitarian would do it.

          Utilitarianism generally shouldn’t look consistent in any greater sense; numbers, scales, and degrees matter to consequences, and situations which are analogous to each other will end up being handled differently because the estimates of the sizes of the factors involved are all different. And since strong evidence is in short supply a lot of the time this is going to involve fuzzy estimation.

          (Corollary: If your position *does* look consistent between analogous situations with wild variations in the relative sizes of different effects, it’s very likely bad utility-wise in some of the cases.)

          This tends to feel very unsatisfying. Probably the only way I could see you improving on it is by making a more concerted effort to acquire strong evidence, though.

    • Anon says:

      Calculate the average happiness of normal people, then calculate the happiness of nerds.

      Calculate the marginal impact on the world of an additional average normal person (Mean, not mode or median) and the impact of an additional average nerd (Again, mean, not mode or median).

      Keep in mind the biggest impacts may be achievable with a relatively small number of nerds, making more nerds marginally less useful.

      iff happyNorm + maginalimpactNorm > happyNerd + maginalimpactNerd, reduce the number of nerds.

      In the opposite case, increase the number of nerds.

      Edit: Comparing happiness to external impact is a classic utilitarian problem. If you’re just saying “How can we do that?”, this is a much less specific and more basic question than I thought. I have nothing new to contribute to that particular question, though it is a good one.

      Edit: By “increase/reduce the number of nerds”, I mean prefer creating (Non)-nerds, or turning one into the other, not just like, killing people or something. I hope this was obvious.

    • Scott Alexander says:

      The most hedonistic-utilitarian thing to do is to convert everything to some computational substrate that just sits around experiencing pure joy all the time; I don’t think such a substrate could be reasonably described either as “autistic” or “neurotypical”, except maybe in the very old Bleulerian sense of “autistic”.

      The most preference utilitarian thing to do is – complicated, because nonexistent people can’t have preferences. I think it would depend on the preferences of existing people, but I’m not sure it’s fair to let the neurotypical majority use its larger size to sway the vote. I don’t think preference utilitarianism has a single strong answer to this question. I usually make it on not-completely-utilitarian grounds about wanting to strike a balance between variety and happiness, but this is admittedly arbitrary.

      • Vox Imperatoris says:

        I’m not sure it’s fair to let the neurotypical majority use its larger size to sway the vote.

        Okay, you’ve lost me here.

        Isn’t the whole idea of utilitarianism that each person shall count for one, and no one for more than one? It seems like if eliminating autism satisfies more people’s preferences, a utilitarian should do it.

        Disclaimer: I am not now nor have I ever been a member of the utilitarian party.

        • jeorgun says:

          Emphatically not— otherwise the concept of a utility monster couldn’t exist.

          (Or, if you find the “utility monster” framing distasteful— most utilitarians agree that the average human’s preferences are more important than the average rat’s)

          Not that that has much to do with the specific case of neurotypicality, but still.

        • Jon Gunnarsson says:

          Utilitarianism (at least in the classical Benthamite tradition) does count everyone as one. However, it doesn’t treat preferences as binary, but also takes into account their intensity.

          Let me illustrate by way of example. Suppose there are a hundred Nazis and ten Jews. The Nazis want to the Jews to be killed, the Jews prefer not to be murdered. In a democracy, the Nazis outvote the Jews and murder them. To a very crude approximation, this is kind of what actually happened.

          But Nazis only gain 1 util per murdered Jew, while a Jew loses 100,000 utils by being murdered. So in our example, murdering all the Jews gives 100*10*1 – 10*100,000 = -999,000 utils, which is why utilitarians oppose the Holocaust.

          (However, as you may have noticed, this calculation is sensitive to the number of Nazis, which is why Robin Hanson has remarked that the problem with the Holocaust was that there weren’t enough Nazis.)

          • RCF says:

            “Robin Hanson has remarked that the problem with the Holocaust was that there weren’t enough Nazis.”

            Assuming that the utils that Nazis experience from killing Jews is dependent on the absolute number of Jews, rather than the percentage of the population that Jews make up.

          • David Kinard says:

            yeah. That is why utilitarianism isn’t flawed. Assigning numbers to the subjective values of degrees of happiness or other sense of what makes a human life worthwhile is flawed. Those things may be ultimately reducible to numbers, but current attempts to approximate them are based on ridiculously simplistic measures.

      • Buck says:

        FWIW, it’s totally not obvious that the best thing to do from a hedonic utilitarian perspective is to convert everything to that computational substrate.

        Wait, you don’t think nonexistent people have morally relevant preferences? Why do you care about human extinction then?

        • PDV says:

          No, it’s pretty obvious. Arguments that it’s not the hedonic optimum just look like bad faith, trying to justify why this value system is compatible with things people would actually want, rather than honestly determining the consequences of the value system.

          And we care about human extinction for the obvious reason: People alive now prefer for humans to keep existing and for their values to be promoted in the future, even after their own deaths.

        • Wait, you don’t think nonexistent people have morally relevant preferences? Why do you care about human extinction then?

          Currently existing people want people to exist forever; so people should exist forever.

          Currently existing people may even want us to change the world to match the preferences of (specific) counterfactual people — but this version of preference utilitarianism says that we should improve the world relative to non-existent preferences because we actually existing people want to, not because changing the world to better match non-existing preferences is intrinsically good.

      • Jaskologist says:

        I’m not sure it’s fair to let the neurotypical majority use its larger size to sway the vote.

        I’m picking at a tangential nit here, but what a nit! The majority doesn’t “sway” the vote, they win it. If that’s problematic, then it’s really time to rethink democracy.

        Disclaimer: I am not an NRX, am generally pro-democracy.

        • keranih says:

          If I was just appointed High Queen of The Universe, then this would all be moot, we wouldn’t waste time on silly votes, and we could go back to grousing about the new season of TWD.

        • RCF says:

          I think that Scott, along with a large portion of the populace, opposes pure democracy (that is, treating democracy as a terminal value that overrules any other moral principle).

      • HeelBearCub says:

        “but I’m not sure it’s fair to let the neurotypical majority use its larger size to sway the vote”

        Isn’t an important metric here whether non-neurotypical people would prefer to a) have children, and b) that their children be non-neurotypical?

        On a guess, autistic people are going to score much lower on both those measures, so from a preferences point it seems like there should be less utilitarian “points” given to NNTs however you count.

    • Matt says:

      Arguably, curing nerdiness would negate utilitarianism, so the utility of utilitarianism would have to be factored in.

  91. Douglas Knight says:

    Have you used the “against against” construction before? It feels familiar. Maybe something analogous? I put it into google and found a New Yorker piece entitled ‘Against “Against [X]”

  92. Helldalgo says:

    I’m autistic, and my knee-jerk reaction is “No, don’t cure it – I have spent a lot of time cultivating a social identity that optimizes the positives of autism and alleviates the negatives.” My true rejection of the idea, I think, is simply a sunk-cost fallacy. All that time spent learning to live with autism feels like it would be nullified by the existence of a cure.

    Of course, that’s ridiculous. That’s like saying the effort put into building horse carriages 200 years ago was nullified by the existence of cars.

    On the grounds that people should be as free to choose as possible: Yes. I agree. No argument there, except for some logistical nitpicks about choice that you briefly addressed in the post.

    The thing is…I enjoy being weird. I have to consider the possibility that I only enjoy being weird because “normalcy” was not available. Or that being weird has been granted high status in certain intellectual circles. Circles like the ones I’d like to be in. On the other hand, I did suffer as a child and I suffer (slightly less) as an adult. The other day, I was walking with my spouse, and a car honked at me. Without thinking, I turned around, screamed an obscenity, and spent the rest of the evening on the verge of a panic attack. I constantly put non-food things in my mouth as a form of “stimming.” Side note: it’s not pica, I don’t eat the things.

    As a child I was virtually friendless. My mother had to spend hours with me on social roleplaying exercises, simply so that I could function with my peers. I could not wear certain articles of clothing that were ubiquitous as a teenager, because of sensory issues. I could not, and cannot, attend crowd events unless the audience is likely to be quiet, or I can slip away when I become anxious.

    I could go on, but you know the story. I suppose that if I really think about it, I would like to see a cure.

  93. Justin says:

    Not to put too fine a point on it, but footnote number three uses literally the same justification that was used by the eugenicists around the world in the early part of the 20th century when they were forcing sterilization (and, eventually, under Aktion T4, “forced euthanasia”) upon the “feeble-minded”, a population not insignificantly made up of people who would now be diagnosed as autistic even by the more stringent definition of the word.

    • Vanzetti says:

      Hitler loved dogs, therefore loving dogs is evil.

      • Justin says:

        Applying eugenics to the disabled wasn’t even Hitler’s idea, though. His cronies mostly got it from people that were trying the same thing in the United States. Besides, I’m pretty sure eugenics is evil on its face, regardless of its connections, I’m just talking about optics more than anything else.

        • Anon says:

          Scott almost certainly would disagree with the statement “eugenics is evil on its face, regardless of its connections” (Unless I’m wildly misinterpreting what it means).

          Everyone here realizes the nazis were bad people and they advocated for eugenics, and many other groups at the time used eugenics in both coercive and pointless ways. Some people just don’t want to throw the baby out with the bathwater.

          • Justin says:

            Yeah, and those people scare me. That’s the one baby I would have been fine with using prenatal screening and selective abortions on.

          • Anon says:

            From: http://lesswrong.com/lw/e95/the_noncentral_fallacy_the_worst_argument_in_the/

            “Genetic engineering to cure diseases is eugenics!” Okay, you’ve got me there: since eugenics means “trying to improve the gene pool” that’s clearly right. But what’s wrong with eugenics? “What’s wrong with eugenics? Hitler did eugenics! Those unethical scientists in the 1950s who sterilized black women without their consent did eugenics!” “And what was wrong with what Hitler and those unethical scientists did?” “What do you mean, what was wrong with them? Hitler killed millions of people! Those unethical scientists ruined people’s lives.” “And does using genetic engineering to cure diseases kill millions of people, or ruin anyone’s life?” “Well…not really.” “Then what’s wrong with it?” “It’s eugenics!”

            That’s Scott’s viewpoint on this topic, more or less. Mine too, for that matter. The way you do it matters, but eugenics isn’t, wholly in and of itself bad. Rather, it’s an idea so beautiful (A world with no diseases, everyone wins the genetic lottery!) people were willing to pursue it in terrible, terrible ways. No idea is so good that every application of it is also good.

          • Justin says:

            Well, given that they’re not all afflicted with one, at least autistic people wouldn’t be affected by “a world with no diseases”, I guess.

          • Anon says:

            http://lesswrong.com/lw/2as/diseased_thinking_dissolving_questions_about/

            I can’t help but feel you’re arguing in bad faith. Replace the term disease with “Biological condition with results in suffering for a substantial portion of individuals which have it”.

            Scott even addressed the exact same point “Is autism a disease” in the article, linking to the same thing I just did.

            Edit: Unless you’re saying that not all autistic people suffer, and thus they wouldn’t be affected by eugenics. That’s a valid point. There’s no need to cure autism in high functioning cases, and in fact it probably wouldn’t even be desirable often. Scott is just saying not all autism is this “Quirky shy nerd” type, and pretending that it is does a great disservice to people who actually have a condition which causes them great suffering.

          • Justin says:

            People who wouldn’t have “suffered” absolutely would be affected by using eugenics to eliminate autism.

            It’s a neurological divergence with a genetic basis that, by all indications, exists before birth and, by all indications, it’s impossible to tell how that difference will manifest itself until it actually does so, so the only even theoretical methods for eliminating it would be with prenatal screening resulting in aborting autistic fetuses or with preventing autistic people from procreating. So-called “high functioning cases” would be babies thrown out in that bathwater. While I’m certainly relatively “high functioning”, I would have never have been born, which is quite an effect on my life.

          • DrBeat says:

            How can you make the “This is bad because it would have resulted in me being aborted” argument, without also being anti-abortion in general?

          • Anonymous says:

            @DrBeat

            I think you could take this a step further:

            “If anything in history had been different, I would not have been born. Therefore, the laws and social customs that have existed were exactly the right ones, and existed for exactly the right amount of time.”

          • Justin says:

            I can make that argument in this context because the only reason given for me having been aborted would be that I would be born me, which I can take issue with personally, whereas being aborted in general does not come with such a me-specific reason, so I can’t really take it personally. I oppose abortion selective based on the specific potential person being aborted, not abortion selective based on the general state of a person’s potentiality.

          • Whatever Happened To Anonymous says:

            >I can make that argument in this context because the only reason given for me having been aborted would be that I would be born me

            Well, yes, but that’s because you being born you would have a good chance of being a significant additional burden (general autistic you, I make no claims to knowing your specific situation and history) on them. If you’re going to prevent abortion on those grounds, you’d be narrowing down the permitted reasons significantly.

          • Max says:

            “Everyone here realizes the nazis were bad people ”

            Actually not. Nazis were people. Mostly normal, good people. Their ideology led some of them(not all) to commit acts which is considered “bad”. That does not make them “bad” or “evil”

            You under same circumstances/time period/culture would do same thing or worse

            Sure there were true psychopaths and deranged people among them – just like there are among every other group of humans

    • Montfort says:

      Admittedly, I am not exactly a scholar of historical eugenics practice, but you seem to be missing a rather large difference here. Scott explicitly mentions that the support would be withdrawn only if a cure were freely available and refused. I think I would’ve heard about it if the Nazis had a way to cure all the “feeble-minded.”

      I’m not sure this will actually make the idea much less repellent to you, but it is certainly not “literally the same justification” as used for T4, it’s more like the same justification Medicaid uses when deciding which treatment options to cover.

      • Justin says:

        When I said that it was literally the same justification, I was referring to the cost to other taxpayers, so only the justification, not his proposed implementation. There’s no actual difference in justification. The Nazis literally made propaganda posters about how much an individual disabled person cost German taxpayers.

        • Montfort says:

          If I were to accept your argument here, we would be forced to conclude that approximately every governmental budgeting decision used the same logic as that which justified T4. Which is, in a sense, true – all states have a finite amount of money and so must prioritize some things over others. But I hope you can see how meaningless that statement is.

          • Justin says:

            Yes, but extremely few governmental budgeting decisions are explicitly about the disabled, and the governmental budgeting decisions that are about the disabled could use a lot less emphasis on the cost to taxpayers — I survived the mayoralty of Rob Ford, who emphasized the cost to taxpayers of every decision so much that he only ever referred to the people of the city as “taxpayers”, even in contexts where it sounded comically absurd — and a lot more emphasis on the real world effect they have on disabled people.

          • Airgap says:

            “See those taxpayers over there? Do you think we could buy some crack from them?”

    • Soumynona says:

      You’re missing or ignoring a nuance. Scott says that people with disabilities should be supported but questions whether that should extend to disabilities which are curable and kept voluntarily.

      This is an actual quote from Scott’s argument:

      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.

      This is literally what the Nazis thought? No wonder they lost the war, those bleeding-heart namby-pamby hippies.

      • Justin says:

        You’re missing or ignoring that, as I previously clarified, I’m speaking in more limited terms, specifically, I’m only referring to the justification used in forming the thoughts laid out in the third footnote.

        So, no, that isn’t what the Nazis thought, but the specific justification used for justifying the need to solve the supposed problem, that of the lifetime cost to taxpayers of keeping such people alive and well is literally the same as that which was used by both the Nazis and the Americans they took their ideology (on this subject) from.

        • keranih says:

          Right. If the social attitude had been that it was strictly the family’s responsibility to take care of the disabled, (or maybe charities), and that the government didn’t have a vital role to play in taking care of them, then so if they ran crazy or died in the gutters it wasn’t a *community* issue to solve, then the idea of The State rounding them all up and euthanizing them would not have been taken seriously.

          It was The State Solves Problems; This is A Problem, The State Shall Solve This equation that gave the power of a whole nation (or most of it) to the inhumane excesses.

          • Mary says:

            “Everything inside the state, nothing outside the state, nothing against the state.”

            That is the totalitarian definition of totalitarianism. Yes, the term has picked up some unpleasant connotations of it, but the root is that; the unpleasantness is the fruit.

  94. Elizabeth says:

    No-cure, “not a disease” is pretty central to most autistic self-advocacy I’ve seen. There’s an increasing acceptance there of autistic people who themselves want to be cured.

    “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.” This has been a big problem at large gatherings of autistics. “Conflicting access needs.”

    • Randy M says:

      “No-cure, “not a disease” is pretty central to most autistic self-advocacy I’ve seen.”
      Sure, but being able to advocate for oneself requires a certain level of competence. Presumably people like those Scott described may have other opinions were they able to clearly express themselves.

  95. suntzuanime says:

    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?

    They discovered a cure, but the Food and Drug and Un-American Activities Committee refused to approve it.

  96. “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.”

    TANSTAAFL. Productive people still have to work and pay taxes to provide that basic income.

    • swerj says:

      robots

    • Justin says:

      While, yes, obviously, the various models of basic or guaranteed income have a base level of costs, it doesn’t necessarily have additional costs above and beyond the current models of welfare in use, so don’t worry too much about your own pocket. People as gung-ho capitalist as Milton Friedman have proposed guaranteed minimum income as a way to get rid of all other welfare systems and even the minimum wage.

      • Nathan says:

        While I’m not going to claim to be the world’s foremost authority on Milton Friedman’s opinions (we have a regular commenter who probably can, though), I think that he advocated a Negative Income Tax as opposed to a GBI, and I also think that that proposal was in his view something of a “second-best” solution that was at least better than the welfare system as it existed. As far as I know, Friedman’s ideal system involved no transfer payments.

        • Tibor says:

          Well, the negative income tax, if I understand it correctly, is more or less the GBI combined with an incentive to work. In the absence of a minimum wage everyone who is healthy enough to function normally can find a job. The negative income tax is meant to be progressive in the way that it always pays off to have a better job…but you get some money even if you make $0 an hour.

          Friedman argued that it would be a good replacement for the current (extremely messy, burdened with huger overhead) welfare system, thus making it cheaper while simultaneously giving more of both the actual welfare and agency (you decide what you spend your money on) to the recipients. My impression is that most GBI proponents do not wish to get rid of the current welfare system though, so this is another difference.

          I am not exactly sure what Milton Friedman’s stance on negative income tax was, whether it was “let us do this now and eventually, once the society is rich enough, we won’t need any state-organized welfare” or “let us do this now and keep it for some 10-20 years to make the transition to no state-organized welfare smoother, if we tune down the state in most areas, we are ready to get rid of state-organized welfare today and be all better of by doing so”.

          • brad says:

            A couple of points:
            1) I’m under the impression that most BI supporters do, in general, want it to replace welfare.

            The sticky bit, which keranih brought up elsewhere in this thread, is what to do about the “deserving poor” whose needs are greater than can be provided for BI. Specifically relevant to this thread is institutionalization which costs far more than any realistic BI would be.

            2) I don’t think you’ve got the differences between a BI and negative income tax quite right.

            It sounds like you are thinking of BI as a flat top up — i.e. if you make less than $15k we give you $15k – income. That would indeed have pathological incentive problems and a negative income tax is strictly superior.

            A BI on the other hand is if you are in the qualifying group (which is subject to debate, but one possibility is: adult, non-institutionalized citizens) you get a check for the BI. No income dependence or proof of “deservingness” or “need” applies. This kind of BI doesn’t not have any convexities where the recipient is worse off from earning a marginal dollar.

          • Tibor says:

            brad: I would certainly prefer GBI over the current system. I would not support a proposition to institute it though unless it eliminated the current welfare system at the same time. Same with negative income tax.

            You were right, I thought that GBI means “if you make less than X, you get X”. This way, I am not sure whether it is better or worse then the negative income tax, both seem like good approaches to rationalize the current welfare system. On the other hand, negative income tax encourages working unlike the GBI. You might end up with a lot of people deciding that GBI and no work is a pretty good deal, which could result with the system being unbearable. Negative income tax is supposed to give you the bare minimum if you don’t work at all and let you find a job, since you can compete with any price (it does not work with an instituted minimum wage of course). Of course, you could set the GBI in such a way that living on it alone is not desirable enough for most people, so only a few people would choose not to work at all and you could sustain it then.

            I am not sure whether the “deserving poor” category is all that big. Basically it only covers genetic health problems. You cannot get insurance if the insurance company knows you will cost it more than you will pay. This also includes institutionalization. But other than that, these high costs can be covered by setting up insurance.

            The question is what to do with someone who did not buy the insurance and then found himself in a position where cannot pay his medical bills. One answer is “his problem, he was reckless, now he has to pay for it”. There is some merit in that. Consistently punishing irresponsibility makes people more responsible. On the other hand, not even the most hardcore libertarians would probably let someone bleed at the doorsteps of their hospital had it come to that. Of course, you can treat those bleeding people and then make them seriously indebted. This seems to me personally like a good middle ground between “no insurance and no cash – you can die for all I care” and “we have to give the best possible care to everyone because life is sacred”. But as you pointed out, this does not work with institutionalization. If someone has an accident with the result of requiring life-time medical care and no chance to ever work again, he will not pay you back, so if he has no insurance you are left with “let him die, he should have bought insurance when he was fine” and “well, let us treat him even if this increases the incentive for others to be reckless and not buy health insurance”.

            So the question is how much money do (inborn health issues+reckless people who end up needing life-long medical care) actually cost. If it is not much (as compared to the economic power of the population), one might solve it with private charity alone (although I doubt charity for reckless people would gain a lot of support), especially since with a more sensible welfare system (negative income tax or GBI) you can reduce taxes and leave people with more money at their disposal (which also means it is likely to be used more efficiently thus leaving the people with even more money). If it is a big proportion, private charity may not be able to cover it anyway.

      • Jon Gunnarsson says:

        It’s not a logical necessity, but in practice a universal basic income would almost certainly be much more expensive than the collection of mostly means-tested welfare systems that currently exist, due to the simple fact that you’re paying everyone, instead of just a selected portion of the population, so unless the basic income is supposed to be much lower than current welfare, the whole thing is going to cost more. Yes, there would be some savings from cutting down bureaucracy and removing some bad incentives, but not nearly enough to make up for the lack of means-testing.

    • Cadie says:

      There are a number of different ways to implement basic or guaranteed income, but nearly all of them involve using them as a replacement for some or all of the other poverty-alleviating benefits programs. So the taxes that are currently going towards housing assistance, food stamps, and the like (and paying for all the bloated bureaucracy involved in those programs) are instead going into direct money transfers.

      That isn’t enough to pay for a real minimum basic income that would be enough to live on, but it pays a large portion of it. And it doesn’t create negative incentives around part-time or low-wage work the way the current welfare programs do. If you make too much, you get cut off, so it actually doesn’t pay to work if you can’t work full-time and/or at a high wage. With basic income, people who are only capable of working part-time in entry level or heavily supervised jobs can do that without losing their housing, medical care, and other benefits. So they end up paying more tax with basic income than without.

    • “everyone gets a basic income” doesn’t mean no one works.

    • Scott Alexander says:

      Yes, but autism in particular would not be costing those people anything. They would be giving the money regardless, and recipients could choose to spend it on autism care or other things that they wanted.

    • RCF says:

      You are comparing remaining autistic with UBI to not having UBI, while Scott is comparing remaining autistic with UBI to not remaining autistic with UBI. That is, you are ignoring the constraint that we are operating within the hypothetical of having UBI.

  97. Name says:

    RE: “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.”

    Do you have a post where you have explained your views on population ethics in more detail? I have a hard time reconciling donating to charities aimed at increasing the number of people who will exist in the future with being pro-choice.

    • Anon says:

      > donating to charities aimed at increasing the number of people who will exist in the future

      Are there any for which this is an explicit goal? “stop people from dying” is not isomorphic to “cause more people to exist” under many plausible moral axioms, especially when “stop people from dying” comes with a lot of “stop people from suffering horribly and imposing huge costs on their communities without actually dying”. Deworming in particular, which is the goal of 2 of the 4 top charities recommended by GiveWell, has only minor effects on mortality but major effects on quality of life.

      Also, evidence has always been that decreasing child mortality also decreases eventual birthrates; it is almost certain that AMF, for example, will lower the total number of lives ever lived (most of the counterfactual no-longer-manifesting lives being those which would have been extinguished after a handful of years of suffering).

    • Anon says:

      Isn’t the implicit assumption by pro-choice utilitarians that a child you have now is one you probably won’t have later? The limiting factor for most parents isn’t how many children they could have (For men irrelevantly high, for women, maybe at least 20?) but rather how many children they want to have. Aborting a fetus thus doesn’t actually reduce the number of children you have, but pushes around the dates, and possibly makes the children, parents and relatives happier and more prosperous through better timing.

      There are obviously extreme positions which require having as many offspring as possible, and these would preclude abortion except in certain eugenic cases, but that’s a very rare position to argue, and almost non-existent to practice.

      • Name says:

        Anon…

        RE: “Are there any (charities) for which this is an explicit goal? “stop people from dying” is not isomorphic to “cause more people to exist” under many plausible moral axioms”

        Yes. See any charity with the goal of reducing existential risk, such as MIRI, which Scott donates to.

        RE: “Isn’t the implicit assumption by pro-choice utilitarians that a child you have now is one you probably won’t have later?”

        Is there any data on how often that’s the case? If it’s 100% (which it’s clearly not), then it’s easy to justify being a pro-choice total utilitarian. But it doesn’t have to go very far below 100% for it to be hard to justify. 87.5% would mean the average abortion removes ~10 years of life.

        • Anon says:

          … What? “Stop everyone from dying” is *definitely* not the same as trying to maximize the number of people who will exist in the future. Yes, it might be a side effect, but also might not. That’s why I asked about charities for which it was an explicit goal.

          • Name says:

            It is an explicit reason that people give for trying to reduce existential risk. But I see Scott has commented that he doesn’t donate to MIRI for that reason.

        • mca says:

          “RE: “Are there any (charities) for which this is an explicit goal? “stop people from dying” is not isomorphic to “cause more people to exist” under many plausible moral axioms”
          Yes. See any charity with the goal of reducing existential risk, such as MIRI, which Scott donates to.”
          Charities with this goal want to see the species (or its predecessors or whatever) extend many generations into the future. Wanting to bring about the continued existence of the species is a very different goal from just increasing the number of people.

          “RE: “Isn’t the implicit assumption by pro-choice utilitarians that a child you have now is one you probably won’t have later?”

          Is there any data on how often that’s the case? If it’s 100% (which it’s clearly not), then it’s easy to justify being a pro-choice total utilitarian. But it doesn’t have to go very far below 100% for it to be hard to justify. 87.5% would mean the average abortion removes ~10 years of life.”

          Unless you address the “not very important moral agent” point, this argument, as others have noted, also implies that utilitarians would have a duty to maximize their potential fertility. Maybe you think it does have that implication, in which case it would seem to be a strike against utilitarianism, but I don’t think you can argue that utilitarianism is inconsistent with being pro-choice without at the same time arguing that it is also inconsistent with extreme pro-natalism.

          • Name says:

            RE: “Wanting to bring about the continued existence of the species is a very different goal from just increasing the number of people.”

            What do you accomplish, ethically, by making a species last longer that is different from bringing more happy people into existence? Do “species” have a moral value that people do not?

            RE: “I don’t think you can argue that utilitarianism is inconsistent with being pro-choice without at the same time arguing that it is also inconsistent with extreme pro-natalism.”

            I agree.

          • mca says:

            “What do you accomplish, ethically, by making a species last longer that is different from bringing more happy people into existence? Do “species” have a moral value that people do not?”

            Everyone bringing as many people as possible into the world right now would run into Malthusian constraints, which is not an issue with making the species last longer. (Also I personally am agnostic between pro and anti natalism from a utilitarian standpoint.)

    • Scott Alexander says:

      I don’t think I donate to charities that exist the future population, except as a side effect of other good things. Nor would I.