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.
Then you should step a bit outside of your bubble. It's very common in the autistic community - and the neurodivergent community at large.
Honestly, the only hostility toward austitic people I see around here is the person invalidating and ignoring the opinions of those within the autistic community.
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).
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.
The implication was that the typical "parents of" Facebook group does not count as an autistic community. In my experience, it's always turned out to be something of that nature, but I've only found 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, and being less direct doesn't get an answer.
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 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.
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?
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.
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.
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.
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?
Use that as a stepping stone to increase his interest in architecture, computer science, mechanical engineering, chemistry or aerospace.
https://m.youtube.com/watch?v=jYSfDcbY0w0&pp=ygULbm9taWZhY3R...
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.
Maybe the difficulties are things we should address as a society, rather than seeking to eliminate a class of people.
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.
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.
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.
One reason we need this fundamental research is to disentangle the different types of afflictions and give them different names.