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.
