I understand the sentiment, but there's a reason it's called the autism spectrum.
I work with several software engineers with autism who are as capable as their peers. Sure they may have behavioral quirks, but not significantly more so than the normal variation in human behavior. Their brains don't seem to work in an inferior or problematic way, just different.
On the other hand, I have a close relative with more severe autism who could never read and understand this article, could never type a comment such as yours. She's incapable of holding a job or living on her own without assistance. Her mother passed away young, and her older sister, just 19 at the time, had to take on the responsibility of being her sole caregiver, and she will have that burden for the rest of their lives.
For some it may be a different variation of the human experience, but for cases as severe as my relative's, I find it hard to believe that a cure or prevention for autism wouldn't be a massive quality of life improvement for all involved.
Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by.
I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats.
I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not.
The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees.
My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?
> My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
> What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
People like to say stuff like this on social media, but I can never quite figure out what they actually mean. Society emerges from interactions between people. If someone can’t communicate, how exactly are they supposed to participate fully in society? All people deserve love and support and dignity regardless of their ability to contribute economically, but I’m curious what this “reorientation” would actually mean in practice.
> If someone can’t communicate, how exactly are they supposed to participate fully in society?
It's not that autistic people cannot communicate, it's that we communicate differently.
For example, I cannot talk on the phone. I just can't. I could explain all the reasons why, but I feel very dismissed here so I'm not going to be vulnerable anymore, but suffice it to say it's something I cannot do, and a lot of autistic people cannot do.
This means people like us can't have jobs which require a lot of phone communication. Accommodations that would allow autistic people to communicate in their preferred way would lead to greater employment of autistic people, but such accommodations are rarely offered for various reasons.
It's other things too. For some people it's lights. For others it's a uniform. For others its noises. For instance, I can hardly go into grocery stores because they play loud music, there's a lot of noises from beeping registers, and the lights are bright and garish. All retailers are like this, and that's where many entry level jobs are. If I can hardly shop there without wearing sunglasses and headphones, then I could never work there because workers are not allowed to wear noise canceling headphones.
Then there are people who require service dogs. You'd think that would be a solved issue, but my friend was just denied entry to a place because of her legit service dog, not even an emotional support dog. They said she couldn't have one because she didn't look blind. Then what, she has to explain to some putz about her autism, expecting he'll understand? No, she backed off and went home and now she won't go out again. It took her that much just to go outside and she was turned away by some busybody, so it's back to being a recluse for a bit.
And that's another thing, is the world could be a lot more accepting of how ND people identify, that would go a long way too. My friend I just mentioned says that her experience as a transgender person is inextricable from her autism. I'm not sure what she means 100%, but also I do, autistic people have a complicated relationship with gender and sexual identity, and a lot of people are very very against those feelings. Autistic people who are transgender (there are many) have a hard time existing in public life because they are shamed, ridiculed, vilified, beaten, and even murdered for who they are. Do you think it's easy for someone who faces those dangers to be employed? There are many transgender homeless people who suffer as a result.
I could go on and on, but all of these things I've listed are ways in which autistic people are marginalized in society, and they don't necessitate "curing" autism to fix, or even really reorienting society as a whole. It's not because they cannot communicate, it's because they cannot participate fully in public life. The solution is to just let them participate in public life. To make things better for everyone involved, we can just be accepting of people's differences and not force them all to be one way, and support them when those differences mean they need help to survive. We can afford to do that as a society I think, why not, isn't that the point of the whole exercise?
For me personally, I can get to quite high levels of "socialness" depending on mood and practice. I can get to muster up the courage to do calls, interact more socially, flirt with someone etc. It does take an extreme amount of energy though.
Where I think it differs for me, is in that if I don't do this type of "social training" constantly, it completely goes away again. If I didn't call my doctor/the post office/relatives in a few months, the ability to just do it normally is gone again and I start from 0. Everytime.
My psychiatrist helps me get to that point again but over time has realized that "exposure therapy" doesn't really work because every few months we have to start from 0 again.
Now having all of that said, for most people these types of interactions and things in life are just... normal. They don't require even a second thought. And that, I would imagine, removes a lot of friction from their lives because these interactions are needed to be a self standing, emancipated, contributing member of society.
Thank you for sharing that. I’m not going to address every example in your comment, and I agree that there are many ways society could be more accommodating. But I also think that not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it. Some jobs require you to talk on the phone, just like some jobs require you to lift heavy boxes. Not everyone can do that, and that’s ok. I can tell you with absolute certainty that I could not do my job as an engineering executive if I could not talk on the phone or video calls, since so much of my job is about making emotional connections with other people, understanding subtle cues and subtext, and influencing people. I have colleagues who I know are on the spectrum, and I greatly respect them and do try to accommodate them where possible. But some things require a level of social skills they simply don’t have.
Beyond that, I have to be honest: reading about your struggles with communication, lights, noise, etc. it’s frankly hard me to fathom why anyone would not want medication that can alleviate those symptoms. I was diagnosed with ADHD in my 30s, and my whole life suddenly made more sense. Stimulant medication dramatically improved my executive function, attention, concentration, impulsivity, etc. but I am still in every way myself while medicated. I am just more in control of myself. I realize there is no medication like that for autism yet, but if there was, I simply can’t imagine someone not wanting it when my life was improved so dramatically by treating my much-less-severe condition.
> not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it
That's why labor law generally has the concept of "reasonable accommodations" and core parts of the job. I don't think anyone is seriously saying that every disabled person can do any job.
It's honestly even more subtle than this. I absolutely agree with you about talking on the phone. I avoid doing things when I know it will mean I have to call ahead - and I would much rather go down there in person and get looked at weird for making an appointment in person.
Yet I've worked 4 different call center jobs and had absolutely no issue talking to people on the phone there. (Probably largely because the "small-talk" in such a scenario is absolutely rote and mundane...)
Fast-forward to my current job (IT) and I hate answering the phone (or joining a meeting) again.
The problem is there's no such thing as "Autism". It's a survey and observation of behaviors that "oh you don't quite behave like we see 90%+ of people to behave socially, so you must have a disease. Let's call it autism."
You are talking as if Autism was some sort of virus that you catch and it disables some people a bit, and others a lot.
Some people have hard time, then deal with those people and help them, based on the symptoms, but don't say you have to prevent some made up label to group certain set of behaviors which many are perfectly happy to be with those set of behaviors and perhaps even proud to be thinking differently than most.
Then people should stop conflating the two. This whole "spectrum" nonsense is nonsense. Your coworkers are not autistic - they are weird or whatever other more PC term you might want to use, and that's great - many, if not most, great engineers are!. There is no need to pathologize differences in people. Your relative, by contrast, is. If you have a habit of feeling sleepy at work, it's not like we say you're on the narcolepsy spectrum. It's just a completely dumb concept.
People like your relative, or the kid who sits around flapping his hand and starts freaking out if anybody interacts with him - those people are obviously not just 'weird'. They clearly have severe mental disorders, and if we want to call whatever it is that they have autism - fine. But if we do, then we need to stop calling people like your coworkers, Bill Gates, or whoever else also autistic.
I got my autism diagnosis in my early 20s (from a licensed psychologist, before you ask).
It was a life-changing experience for me. Suddenly I was able to understand and validate my experiences and shortcomings, and to improve myself based on that understanding, instead of resigning myself to the fact that I’ll always just be a ‘weird’ human with ‘weird’ opinions, feelings and experiences.
I suppose though that since a random guy on HN said so, this is actually impossible, and I should just go back to having the entirety of my lived experience dismissed as ‘weird’.
Same here. After a diagnosis, one is able to give in and learn how to cope with it instead of fighting it, struggling and letting it lead to self deprecation.
Strategies and research about it aside, the fact that one can come to "accept" oneself despite that condition is very important for general mental health.
I still wouldn't wish it on anyone but personally I'd always accept my self as a valid human with a valid life despite that.
Why do you think things like astrology persisted for so long? If not for the Church (which banned astrological prediction as blasphemous contradicting religious belief in self determination), it'd almost certainly still be with us. In fact when founding modern psychology Jung was heavily influenced by astrology. See - astrological psychology. [1] And his earliest work was with schizophrenia, from which the invention of autism would shortly emerge as a form of 'mild schizophrenia.'
It's always the same game with pseudo sciences. It appeals to our biases or desires, which results in enough people turning off their skepticism (because they like or agree with what they hear) to let it perpetuate itself. In astrology no issue or problem was of your own nature or doing, it was merely because the stars were not aligned. That has gradually transitioned to being replaced by because you have this psychological classification, or that.
You are still the exact same weird person you were before the diagnoses, and you always will be. And that's perfectly normal, so to speak. The declining trend of real, and deep relations, in the West seems to have left many people failing to understand something. Everybody is weird. If you think somebody is "normal", that simply means you don't know them well enough. And weak autism diagnoses and treatment in modern times seems increasingly geared towards pushing people towards arguably undesirable traits (such as excessive emotiveness) while doing away with many traits and characteristics (such as singular focus, minimal susceptibility to emotionality, or obsessive attention to detail) that are highly beneficial for leading a productive and successful life.
Yes all people are weird, and autistic people are people, so it's no surprise they are weird. I don't think this is a failing of Western imagination, I'm not sure who gave you this impression.
Autism isn't about being weird or quirky though -- it's a developmental disorder and the behaviors associated with it are disabling in our society. This is characterize as having "significant impact" on ability to function.
Well, no. Many of the behaviors associated with it, even the literal diagnostic criteria, are extremely beneficial in our society. It's not just a weird coincidence that many of the most successful tech, engineering and even business figures could be (and in multiple cases have been) diagnosed with autism of varying degrees, notably post-facto.
If anything I think the rampant over-diagnoses of middling cases is itself extremely harmful. Because it's going to lead otherwise perfectly viable humans to think that things are just out of their control because they have whatever the trending diagnoses in psychology is, and a diagnoses of failure becomes a self fulfilling prophecy. Suicide rates among those diagnosed with ASD, while having at least average intelligence, are ridiculously high. [2] Whatever is happening with these diagnoses is not this self affirmation bs people are spewing.
A bit more than a hundred years ago we'd have been having this topic, with the context of phrenology [1]. A nice little quote from that page: "Phrenology has been psychology's great faux pas. — J.C. Flugel (1933)." And so too will autism be. Until soon enough we might start to accept that psychology is not just a pseudo-science, but an exceptionally destructive one at that.
There’s this thing people online tend to do where they’ll take a well-defined word or phrase like autism spectrum disorder and just decide that it actually should mean something else and get mad when everyone else uses the word in the “wrong” way. It consistently derails conversations, and it almost never brings anyone around to a place of greater understanding.
I'm not arguing over the semantics. I am rejecting the entire concept in its overly broad state. Imagine somebody said 'Oh don't worry about your weird coworker. He's just acts that way because he's a Sagittarius.' Obviously you'd look at them pretty cockeyed. I'm not arguing about what a Sagittarius is, but rejecting the idea of it having a well enough defined meaning to ultimately mean anything. Of course millennia of people of all classes, including the founder of analytic psychology (who was quite enamored with astrology) would have strongly disagreed with me.
According to the CDC we're now up to about 3% of kids being "identified" as autistic. [1] In 2010 it was about half as many (per capita). And then in 2004 it was about half as many again. At this rate one can reasonably speak of a majority in the future. Which is quite silly. One of the main differences between a science and a pseudo-science is falsifiability. If an oncologist diagnoses you have a malignant tumor - this is falsifiable. It is either true, or false. You don't need a consensus or an opinion.
But in psychology, there is scarcely such a thing as falsifiability, especially in the overly broad diagnostics. This applies not only to diagnostic/analytical psychology, but even to contemporary research in psychology. Psychology is the butt of the replication crisis with even leading psychological journals seeing replication rates in the twenties. There's something very wrong with this field, and it can be largely explained by considering the fact that it may simply be a pseudo-science.
What you are seeing is the effect of acceptance and awareness, not overly broad diagnostic criteria. It's not reasonable to extrapolate from these rates to half the population.
We are talking about human brains and psyche here, not much is known, and it's hard to conduct falsifiable experiments. If this upsets you, don't concern yourself with such endeavors, who asked you? Not every truth is found through the scientific method. Others are telling you that their diagnosis gave them peace and understand, a foundation on which to build an identity. Why are you here trying to take that away from people? What is your reasoning for making these arguments?
This is like asking where to draw the line when somebody is bald. Are you bald if you have 1 hair? Yes. 2? 3? 137? There's of course reasonable room for discretion in saying what is or isn't bald. But it isn't reasonable to say somebody with a full-on afro is on the spectrum of being bald.
Literally some of the most high functioning and successful individuals are being diagnosed as "on the spectrum" of what is, in its "real" form, a completely crippling and disabling condition that yields individuals who would have simply been classified as mentally retarded in the past. This is just completely nonsensical.
What you call "real" form is just a strong form, and there is no clear line to draw between real and not real autism, or between "completely crippling" and "not completely crippling", etc.
Because pathologizing and aiming to "treat" behavioral characteristics that are not only not harmful, but actively beneficial in many cases, is completely and utterly absurd. It'd be akin to something like, 'Oh you seem to be oddly content with your life. Have you gotten yourself screened for stoicitis? I hear there's some treatments available.' It's just nonsensical.
The reason behavioral characteristics are pathologized is because they near invariably result in "meaningful" harm to an individual or to others. And "meaningful" isn't a guy saying mean things because he doesn't care about your emotions, but rather a schizophrenic deciding to go start killing people because the voices in his head told him to.
Autistic as an identity and autism as a disease are different things that are difficult to uncouple. Similarly to obesity, it's difficult to talk about the health aspect without people being sensitive about the identity aspect. I find it's useful when reading about research to empathize with the authors and realize their work is an attempt to be constructive instead of providing social commentary.
I'm being productive by pushing back and saying that when people say that autism needs to be cured and prevented, that they shouldn't say that, because autism doesn't need to be cured and prevented.
It's not a disease, but in this society it is a disability, and there's a stigma and lack of understanding around autism in general.
What we can do today to make life better for autistic people everywhere is to spread awareness and acceptance of autism. Not talk about curing and preventing it. That's stigmatizing.
Of course society should become more accepting and accommodating of differently-abled people of all types. But can you really look at the extreme end of the Autism spectrum and say that isn't a disease or disorder?
One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.
You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
It's true, miscommunication and misunderstanding, as well as stigmatization can lead to situations where autistic people are hurt or even killed. This happened recently with Ryan Gainer, who was killed by police after he charged at them with a gardening tool during an autistic meltdown.
But as you said, we should ask people with milder presentations, and listen. While they may impact quality of life, I don't see any autistic people here or in my communities calling for a "cure" to deal with such problems.
We made a big deal of Autism Acceptance and Awareness Month, which was April. There is no autism prevention movement, unless you count Autism Speaks, which is considered a hate group within the autistic community.
I agree, I'm always happy to step out my bubble. That's why I'm here on HN -- this is not a safe place for autistic people. That said, it was not obvious to me you are a spokesperson for Autism Speaks.
Pretty sure the person you are responding to is just being an asshole, inadvertently demonstrating your point that this isn't a safe place for autistic people.
I was only responding in kind. And I'm autistic myself, so.
Honestly, the only hostility toward austitic people I see around here is the person invalidating and ignoring the opinions of others within the autistic community.
I’m not invalidating opinions from autistic people tho, I said many times autistic voices should be centered.
When I typed what I had said before about not seeing any different opinions here from autistic people it was not because I was ignoring your opinion but because I had not seen it. Your opinion is valid.
However I don’t honk you were only responding in kind in your last reply — the poster was simply asking a question and you replied with sarcasm.
My question and concern for you is: are you not worried that such efforts will further stigmatize autistic people as in need of a cure without ever actually offering one?
For me the worst of both worlds is one in which people earnestly work for a “cure” to a problem that can’t be solved through medicine, all while making the societal problem intractable (as everyone is pushing for that miracle cure).
> the poster was simply asking a question and you replied with sarcasm.
They were not simply asking a question - in that case, they could've dropped the second part, which had exactly the same implication as my sarcastic reply.
Anyway...
> are you not worried that such efforts will further stigmatize autistic people as in need of a cure without ever actually offering one?
No, I'm not, because I don't see them as being mutually exclusive. We can do research to understand the causes of ASD and other neurodivergence - and hopefully eventually offer options for those of us who don't like to live with it - and still work toward destigmatizing it and making society less problematic for people like us. We've been doing that for decades at this point.
I would also note that you're only considering outward pressure on autistic individuals - that is, you're focusing on how difficult it is for us to live in society. But that is only one part of what autism is. Even if society were perfectly accepting of us and there were no obstacles at all in it, I'd still be overstimulated by the sound of rain, or have a meltdown because I can't get away from a smell, or... There are various "internal" symptoms that no amount of destigmatization will ever get rid of.
I'll also point out that, maybe the reason you don't encounter many autistic people who want to be "cured", is because people like you - who so strongly oppose such research - make us feel like traitors to our kind, and so we just shut up about it, and feel isolated even from the one community who we shouldn't feel isolated from.
> They were not simply asking a question - in that case, they could've dropped the second part, which had exactly the same implication as my sarcastic reply.
The intended implication was that the typical "parents of" Facebook group does not count as an autistic community. In my experience, the alleged "autistic community" has always turned out to be something of that nature, but I've only found that out after a lengthy back-and-forth. I phrased the question how I did, because I've found that being more direct puts people on the defensive (more likely to lie), and being less direct doesn't get an answer (less likely to give relevant details). You are the first person I've spoken to who has responded affirmatively.
If I had intended to imply that you were acting in bad faith, I would have dropped the first question, consulted the news guidelines, deleted my entire comment, downvoted yours, and then moved on with my life. I did not.
I apologise for how it came across, but this is one of those fake apologies because I really don't know how I could've done better.
> I'll also point out that, maybe the reason you don't encounter many autistic people who want to be "cured", is because people like you - who so strongly oppose such research - make us feel like traitors to our kind, and so we just shut up about it, and feel isolated even from the one community who we shouldn't feel isolated from.
Eugenics is a wonderful idea that of course we should be doing. However, history suggests that humans cannot be trusted with eugenics. Most autistic people, no matter how worldly, no matter how cynical, just don't get how large groups of predominantly-neurotypical humans behave. You know that innate sense of right and wrong you (likely) have? The closest thing (most) neurotypicals have is a sense of honour, and… well. https://en.wikipedia.org/wiki/Honour is not the same thing.
Most people only care about doing the right thing if other people would find out, or if people they personally know and care about would be affected, would they do the wrong thing. For a good while, the prevailing academic thought considered autistic morality as evidence of an autistic deficit in theory-of-mind: autistic people clearly don't understand that they're allowed to do wrong stuff whenever nobody could ever find out! (I've lost the paper I learned this from, but https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4834434/ describes autists as having "atypical inflexibility in morality" – which is damning enough.)
We cannot trust most people, but academia is at its core about distributing knowledge (or "knowledge") as far and as wide as possible. The people most likely to act on this kind of research most immediately are organisations like Autism Speaks, who prioritise stamping out autists over the welfare of actual people. (Exercise: compare Autism Speaks' genetics research budget to their marketing/"outreach" budget. Compare that to their torture-"therapy" budget for trying to coerce masking behaviours out of three-year-olds. Now compare that to the money they actually spend on helping actual people live their own lives.)
No matter how much we want the outcome, we have to fix society before we try to research things like this. And I have no idea how we can fix society enough that we can do eugenics without… well, without https://en.wikipedia.org/wiki/History_of_eugenics.
The ultimate goal of the eugenicist is to eliminate the people who are not like them. This is how it has always been. No matter how they dress it up in smiles and sunshine and roses, this is the beginning and end of their goals.
It is only safe to research eugenics when these people have no power, and there is no expectation of them ever getting power again. (I fear we may never get there, but that sentiment will be a self-fulfilling prophecy, so I continue to act as though things will be better within my lifetime.)
That's why we have the taboo. Hopefully this information helps you talk about your feelings without triggering the taboo. You are right that you should not feel isolated for the way you feel. (I expect that, among the most vocal enforcers of the taboo, are those who feel the same things you do, and for whom pride in their identity forms part of a coping mechanism.) I hope that it is not anybody's intention to exclude you for disliking your own inability to process certain stimuli.
I thought your point was about your opinions being invalidated and ignored, but now I don't think I know what your point is.
You identified a problem. I questioned whether it was real. You, obliquely, affirmed that it was, but did not provide enough information for anyone (not already in the loop) to address it. Therefore, I spent an hour giving you enough information to begin addressing it from your end. What point does that make?
… Yeah, I see how you could take that away from it. Thanks for explaining.
There are treatments for specific issues associated with autism (e.g. ADHD medication, noise-filtering headphones, AAC tools), but autism is a form of human polymorphism. Like allism and situs inversus, it's a developmental condition, so any research programmes with the capacity to "cure" autism are eugenics research programmes. That's a literal description, not a normative one.
Your desire to avoid suffering is independent of this fact. It's a very much understandable desire, and almost universal among humans. If you make the distinction clear, then well-meaning people won't attack you for expressing that desire. (This has nothing to do with eugenics.) Queer and autistic communities are usually quite big about the right to self-modify.
If you face exclusion or opposition even when it's clear you're talking about your desire to have something available for yourself, and not advocating for a particular approach to be taken (within the context of our sociopolitical environment), I would like to be made aware – ideally with details –, because that's the sort of thing I care about putting a stop to.
Fwiw, I am very, very sad that modern humans cannot be trusted with eugenics. I would like it if that option were available to you. You are not wrong for wanting it. But in the world we currently live in, it's not worth it.
Depends. Cool cyborg eyes, better glasses, cataract surgery, retinal detachment surgery, etc. are not eugenics, so they're fine to advocate for. Heritable genetic modification, embryo selection, sterilisation campaigns etc. are eugenics, and advocating for them will do more harm than good.
Visual impairment isn't, afaik, something the eugenics bad guys are focusing on at the moment – though it was in the past – so they're not likely to twist research into the sorts of things that get bowdlerised out of history textbooks. (e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5225285/ exists, but there's no organisation seeking legal permission to electrocute non-compliant blind children.*) So even if you keep it vague, advocating for "curing" blindness is unlikely to be seen as, or act as, advocating for eugenics; likewise, research into the developmental origins of (say) congenital cataracts is mostly safe.
Eugenics is when you take measures that improve the overall fitness of the human population. In other words, eugenics is when you decide which kinds of people should and shouldn't exist.
There are people with skin so fair that it burns in even moderate sunlight – even through clothing –, leading to an increased incidence of melanoma. This is associated with the Asp294His polymorphism in the MC1R gene. This would be very easy to "cure"… and I really wish, as a species, we had the capacity to say "hey, option's available to anyone who wants it, but we won't force it on anyone". But if we had that technology today, you know it would be used in some tired plan for ethnic cleansing, where the cruelty is the point and the costs don't matter. Every time we have some scientific (or cultural) advance that can be construed as legitimising such actions, people attempt it.
And maybe we'll grow past that.
---
*: since they've come up in the thread before, I feel obliged to note: Autism Speaks' PR machine is, surprisingly enough, on the right side of this particular child torture issue.
> You don’t even have to go to the extreme end. Ask people with milder presentations, and they’ll be able to tell you about all sorts of confusing interactions and frustrating situations they’ve experienced that wouldn’t have happened if they were neurotypical. Hard to say that doesn’t impact their quality of life.
Sure, I had rough childhood, but looking back, I wouldn't want to be someone else. The way my brain focuses and optimises for certain ideas actually benefits society if the environment is correct.
There's only limited amount of processing power anyone can have. I just have less points for social and more for other areas that others don't have. Yet society expects us to normalize or consider it a disease. I'm now very successful and extremely proud where I have reached in life.
In my childhood I used to question why people didn't like me, if I had myself from now to guide myself, and create an environment for myself, I'm sure I would have had 100% happy childhood. And I know what and how to do if I ever had someone like myself as a kid, and it's not a disease.
The reason my childhood was terrible was EXACTLY because of expectation that everyone should behave like X, and that was just not me. So everyone tells me I have disease that needs to be fixed. It's disgusting.
I didn't finish high school because of all the issues I had, and spent years in depression, but as I happened to finally land in an environment that appreciated my differing thinking I was able to do exactly what my brain is suited for and make 8x+ average income in my area. I had passion as a kid, interest in weird things, but school and the social environment killed every little bit of it.
> I had passion as a kid, interest in weird things, but school and the social environment killed every little bit of it.
As a parent of an autistic kid: How would you cultivate that? Our son is autistic, he is 8 years old. He started to hate school. All he cares for is Minecraft and Magic: The Gathering. It's a bit sad to see that he seemingly drowns his curiosity by immersing himself mentally only in these two topics. I wonder if there's a way to guide him to develop interest in other topics. Any recommendations?
Best I can say is lean into it. Make everything those themes or adjacent to them in some way. You’re lucky because Minecraft is a gateway to computing in general. Find out what he specifically likes about it and then figure out how to use Minecraft to build a bridge toward real world skill that still include everything he likes about Minecraft.
Forcing him to do things he doesn’t want to will be next to impossible. RSD is real and irrational. You can trick him into wanting to do things though.
And by trick I don’t mean deceive but just to make him thinks he wants it. Give him a choice and let him choose, but make both options good. Don’t force him to do things your way or the correct way as you see it.
Autistic people like to build and use our own systems, so that’s probably what he likes out of Minecraft, a world he can shape to his liking. He rejects the real world because it forces him to be something he doesn’t want to be.
Thanks, coincidentally, I listened to a podcast episode about RSD (assuming you mean Rejection Sensitive Dysphoria) this morning and yeah, it is absolutely real. He's extremely sensitive to criticism, which often results in a vicious cycle. Will try to work with Minecraft to give him more topics. So far, he didn't like the whole Redstone logic stuff, but maybe it'll come in a bit. His mathematical abilities are actually quite good (and so are his language capabilities).
Those experiences wouldn't have happened if the autistic people were medicated to neurotypical or neurotypical people were more accepting of autistic people. And many autistic people would reject being medicated to neurotypical despite those experiences.
I can. When I look at extremely functional autistics like Elon Musk, the idea he has a condition which makes him diseased and disordered is absurd.
I think the natural reaction to that is that either diagnostic criteria should be narrowed and/or it should be possible for people to lose their diagnosis if they achieve Elon Musk levels of functioning.
-OR-
Autism should be viewed more neutrally, as people of a certain type who are more susceptible to disease or disorders but to not necessarily have them.
Do you have a personal relationship with the man? We're all well aware of his public persona but that has nothing to do with how it is to actually interact with him as a person. Or any other autistic person. Watch Hannah Gadsby: Nanette and realize that you don't see the failures, only the successes.
Elon Musk is highly functional but he also has a wide and deep support network unlike most other autistic people. He self immolates all the time and he's propped up by his great wealth. He self medicates with drugs. He has a team of people who handle his every need. When normal autistic people self immolate as such, they are cast from society forever - fired, locked up, abandoned, or even killed. And just because someone is high functioning today, it doesn't mean they will always be or always have been.
Not only that, consider the societal advantage of this behavior. Many social rules are wrong and group-level maladaptive. Having a subset of the population that doesn't adhere to those rules benefits society by allowing it to break out of local maxima.
It's not a tendency we should suppress. Punishing people for non-conformity is the act of a villain. And yet we do, so that only people with wealth can survive doing it.
Yet he functions well in niche circumstances, and he's currently in said circumstances and functioning. Not only that, most people would not be able to function as well as Musk in Musk's shoes.
Also, the absurdity isn't really Musk in a vacuum, it's him being in the same basket as people who can't complete any activities of daily living. He might actually be more similar to quite a few people with ADHD than quite a few people with level 3 autism. It's very strange and incoherent even.
This is, by the way, all a result of what a mess of a taxonomy the DSM and ICD are.
This is about people diagnosed before the age of 5, they're almost all cases of severe autism. That's very different from the kind of autism you're talking about.
People who are permanently unable to live independently have a condition that should be prevented if possible.
As a spectrum, autism presents in many ways, but it's all considered "autism" at this point. There are not different "kinds".
Sometimes "severe" autism at an early age calms down as a person grows.
Sometimes "mild" autism gets worse as someone becomes dysregulated and overstimulated.
Many times autism is missed in women and POC because they mask more readily than boys. Sometimes it's missed in boys because it's explained as "boys being boys".
Either way, why don't you ask autistic people if they want to be "cured" or "accommodated"? I think you'll find the answer is "accommodation". It seems like, to me at least, it's only not autistic people who talk about "curing" autism, as if they'd be doing the world a favor if there were no more autistic people.
I have autism myself and so do both my kids, I would love it if there was some way to lessen it. It's a great hindrance for me, all the time I want to do things that I feel I should be able to do, but then run into various walls.
My children (15 and 10) are learning about themselves but they haven't found an advantage of their autism yet.
But, we function well enough, I can hold down jobs and so will they, it's a set of things we're not good at but we can deal.
The severe cases I know, I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
Thank you for sharing your experience, I agree there are so many walls!
I guess for me, I can't even perceive of a state of mind which would not see the walls. And I worry... what would change about me if I could see through the walls? Would I still be me? Because I like me, so I wonder what would happen. My great fear when I hear talks of a "cure" is that it will be used as an excuse to cleanse ahem I mean "cure" people like me and you and your sons. So you can understand why I don't want to go down that road. It's been done before.
Although I can't conceive of a world where I can see through the walls, I can picture a world where the walls are not there, and that's what I advocate for.
> I have never heard them utter a word, or leave the house on their own. They live in a world inside their heads. I really can't see what they have as the same as what I have.
It's true, we often wonder what those people would want. People have opinions as to whether they should have existed at all in the first place. I have a friend with Down's syndrome, and she's awesome, and I'm not sure what she would say in this situation, but I know as far as I'm concerned I don't want to live in a world where she doesn't exist exactly the way she is.
So as far as autistic people who cannot advocate for themselves, I'm not going to make the decision for them, and I don't think anyone else should either.
Autism is a spectrum disorder, but while you may be picturing it as a continuum from less autistic to severely autistic, with nonverbal autistic people at one end and high functioning autistic people on the other, that is not the reality of autism.
Here is a good blog post written by someone, with a graphic that shows the difference between how people think of autism versus how others experience it.
As they write, this means some autistic people who are nonverbal can go to college, while the author doesn’t have that capacity despite being verbal.
I’ve seen many times in this thread people pointing toward nonverbal autistic people as a reason we should try to cure autism. But it’s not clear to me that people here even understand autism enough to be forming opinions on what we should do to “fix” it. I think if someone is not autistic they should first try very hard to understand a variety of autistic experiences before forming an opinion on what to do about it.
As for me, to answer the original question my neighbor growing up was nonverbal. We used to play legos together. He could communicate, but he didn’t talk and he didn’t like being touched.
Thank you for your candid comment. It is frustrating to engage via comments and I have learned something from your comments.
All labels including "autistic" are usually very misunderstood - often even amongst people with the same label. Hopefully commenters here are more understanding - given that if you work in the software field you very often deal with people with mild traits of autism.
Yeah I think people who are autistic gravitate toward it. It's a very happy coincidence that so many things about computers attract autistic minds. It's a skill that's valuable enough and specialized enough that autistic idiosyncrasies are tolerated to a greater degree than in other fields.
I know deep in my heart if my special interest were birdhouses or windchimes, I would not be in the privileged position I am today. I also know that if my skin were not white, my gender were not male, and my orientation not straight / cis I would not have the same life experience as I did, which all things considered has turned out okay (others called my inability to live a typical life an objectively negative outcome, but I disagree!).
Many of my friends are POC or trans or gay and they face challenges I do not on top of their autism. I don't think I would be nearly as "high functioning" as I am if I weren't conventionally attractive and part of a majority race/ethnic group in my country.
Thanks for listening and learning something; I'm glad my attempt at spreading awareness has worked on at least one person!
IIRC it's not really masking, more that children of color are more likely to get labeled "disruptive" or "defiant" than diagnosed as autistic, at least compared to their white peers. Two kids could exhibit the same behavior, but one is correctly recognized as having a meltdown and the other is written off as a troublemaker.
I was diagnosed at 4, I have legal paperwork proving I permanently cannot live independently, as such paperwork is necessary for impoverished families and adults to access certain social and financial benefits. I currently live independently.
Despite me being in this category you describe, I do not believe I have a condition that should be prevented if possible. I see researchers like FTA as having a conflict of interest - as wanting to portray themselves as the saviours of those shackled by their metabolism - which is best done by painting the saved in as negative a light as possible. I believe that I've been unfairly defamed and stigmatised by the medical establishment spreading lies and half-truths of convenience to promote the need for the general public to finance schemes to cure this horrible condition and take care of desperate children and families. I've dedicated my life towards enabling others from a trap of dependance caused by poverty specifically, because what else can I really fucking do to change perceptions besides being one person who enabled several others to live independently? Yet it's not enough.
So that's why I come into hacker news threads, throwing shade on the general concept of "Autism", a homogenous condition which caused by concrete biological phenomenon, and our need to cure it. Since to me, it was and always has been, a behaviourist diagnosis of clinical convenience there to serve social ends which gets reified into essentialist bullshit featuring an overbroad label defined by "deficits" that is taken far more seriously than the science warrants which dooms people to stereotyped perceptions, pathologisation, stigmatisation, segregation, eugenics, and warped medical care.
If something should be prevented it's doctors inane, fatalistic, and biased prophecies that somebody will never be able to live independently. It's not proven somebody cannot live independently until they die as dependants, what you describe are only opinions. I have refuted N=1 such opinions already and that won't be the last one.
No, the discussion here was about the 5 year olds diagnosed with autism in the study.
The severity of their autism was then argued based on how few of children with autism diagnosed by age 5 were able to live independently - and I directly questioned the validity of these statistics by pointing out the ulterior motives people have for making such a declaration, and how this isn't actually based on subjective opinions and not empirical measurements.
You respond to my criticism by proclaiming that we're talking about severely autistic children who are non-verbal and screaming all the time.
The average age of diagnosis is between 4-5, around half of the current autistic population were diagnosed by 5, most autism diagnosis in the modern day is for "mild autism", even for early diagnosis. Don't forget that the ever loosening autism diagnostic criteria, half of those diagnosed today would have never been diagnosed in 2014, how mild the autism is of who we're talking about is milder than what most people are familiar with in their past experiences with autistic people.
Do you have an example of an autistic person screaming in terror all the time?
As in all the time I mean, not just the times you’ve seen them.
I’ve never met someone who does that so I’m curious how it works.
My friend growing up was nonverbal, we used to play legos together. He would scream when he was touched and forced to do things, but it wasn’t all the time. So I imagine someone like your describing would feel that sensory overload all the time. I’m wondering if it is ever alleviated through dark or silence, and if not that would be hard to live with.
I guess in my experience autistic people don’t scream when they’re left alone, but my experience is very limited.
> For the majority of people with ASD, the condition is a significant disability, with only 10–20% of children diagnosed before 5 years of age able to live independently as adults.
It's not the autism that does any sort of disabling. If there are some sort of issues that are disabling someone's way to live normally, deal with them, but don't use autism as a label or call it a disease.
There's no "autism" as a "disease" that causes those symptoms.
Autism is a condition which cause is not exactly clear, but there are clearly identified symptoms "attached" to the "word/label" "autism". Which is how you define/classify/identify a word, and in this case a disease or a disability if you prefer.
May no parents with autistic children ever read your comment.
So what's the issue with non-verbal "autistic" people then? All those people with the same symptoms and presentation, if that's not a disease or better, a disorder, then what is it?
Autism is clearly a "spectrum" disorder that is not fully understood or categorized yet, which is exactly why we need this type of research to reach a conclusive, testable biological basis.
To portray severely afflicted people as simply "neurodiverse" and dismiss treatment options for them, is far more bigoted than the reverse.
I don't care about being hip, woke or cool. It's just my perspective of the World. Also speaking of experience, I don't see how I have a disease for example.
In my view, it's mostly the environment provided that's at fault. E.g. social expectations. I think it's a good thing for there to be variance of the way people perceive the World.
I had a rough childhood, but I wouldn't have wanted someone to change who I am. I had a rough childhood because of the expected standards for how a person should behave or be socially.
Now as I am older, and more confident, successful and have proven that given good environment I can do amazing, I understand how ridiculous people are being with their social requirements. None of it is needed.
Also I find it quite funny how people treat labels in psychiatry as some sort of gospel or an actual thing.
There are specific challenges every person in the World faces. Deal with these specific challenges. But don't group bunch of people as autistic and then go on to call it a disease. Many of the challenges are caused by the environment or flawed social expectations.
I'm diagnosed ASD as well and I strongly disagree with your statement as it stands.
There are people who are profoundly impacted by autism. I _can_ go to a shopping center. I don't like it. I may have to hide in the bathrooms for a while a few times while visiting but I _can_ do it.
But I know people who spend most of their lives in fear, because there is just so damn much going on around them all the time. Their senses are turned up to the point that the sound of their own breath is like a lion roaring. The splash of light across the curtains as a car turns into the street is like a lightning flash. Sounds, sights, flavours, smells, tactile sensations all turned up to 15 on a scale of 1 to 10.
Often these kinds of people never learn to talk, or read. They end up living in homes (modern asylums) because they need constant care. And inside they're screaming in terror all the time. Sometimes they scream aloud.
I believe these people deserve better. Helping prevent the development of severe disability is what I believe the article is talking about, not eugenics.
If you don't mind being on the spectrum, that's great for you. Some of us are looking forward to more research like this. Many of us don't want to go through this struggle forever, or make another generation go through it, all while waiting for society to get its shit together and completely reorient itself to be neurodivergent-friendly? No thanks.
This is just ridiculous, just like some deaf people wanting their kids to be deaf to be part of the deaf community.
We were born with ears for a reason, same thing, our brains are to a huge percentage built for social skills for a reason.
We can call them however we want but all these are basically diseases of various forms.
People can choose their hair color, to grow their nails long, their clothes or the myriad other things that allow us to express our uniqueness, without making life stupidly difficult for no reason when it's already super hard.
As an autistic person, no thanks. Let people be autistic.