5 ms·

Thank you this is helpful. The genetic part makes sense to me, my wife has PCOS and they have a history of ovarian problems in their family. There are studies l

Thank you this is helpful. The genetic part makes sense to me, my wife has PCOS and they have a history of ovarian problems in their family. There are studies linking PCOS and autism and to high levels of testosterone. The mystery to me was why they are so different.

burnte 2y ago
Yep, for decades thought genes were everything, then we started to realize epigenetics and proteomics are even more important. DNA is the code, and as we all know code can run differently in different environments.
wizzwizz4 2y ago
Those studies were designed to confirm Professor Sir Simon Baron-Cohen's "extreme male brain" theory (which, by the way, is a crock of shit). High androgen levels and high oestrogen levels are associated with autism (ref: https://doi.org/10.1038/s41380-019-0454-9 https://doi.org/10.1038/s41380-019-0454-9) and there's no reason to believe the arrow of causality points in any particular direction. I recommend you not focus overmuch on why your kids are autistic. (The most likely reason is that one or both of the biological parents are autistic.) Disabilities are contextual, and autism can be a significant disability if you want to "live a normal life", so the best approach is not to impose arbitrary constraints and unrealistic expectations on them. (And really, who wants to keep up with the Joneses, anyway? https://xkcd.com/308/ https://xkcd.com/308/) If you're interested in the topic generally, by all means learn about it, but none of this will help your daughters. There's no way to "cure" autism, because there's nothing to cure: it's just a way to describe a way that some people are. (Though some associated conditions, such as difficulty focusing can be treated with medication (I'd recommend not putting kids on ADHD drugs, because it's hard to distinguish between a genuine problem with cognition and mere excitable boredom from the outside.), others (e.g. hypermobility, coordination issues) can be mitigated with physiotherapy, and yet others (e.g. social anxiety, miscalibrated hunger / thirst detectors) can be alleviated with explanation, strategies, and practice.) A good part of the differences in "severity" of their "autism symptoms" will be the extent to which they grok the things in question. For example, if you're not interested in verbal communication, you're not going to study it intensely to pick up on how other people instinctively behave, so you won't learn to imitate it. No amount of wanting what verbal communication can get you will give you the intrinsic motivation you need for (years of) extended, generalisable study – at least, not unless you happen to be good at long-chain motivation. If, however, there's a fun game you like, and playing that game involves developing proficiency in the (inherently boring) skill… well, there's a reason so many kids learn English by playing competitive video games.
- djhope99 2y ago
  Thanks for taking the time to write this. I appreciate it, I read it to my wife and she agrees we should stop thinking about the why. It’s not so much that we want them to be normal or are particularly worried about that, we are very anxious though about what happens to them when we die and what abuse they might face.
  - wizzwizz4 2y ago
    I will interpret your gratitude as license to infodump. (I have many thoughts, and few parents-of-children to share them with.) They're not going to be dependent on you their whole lives. They will be dependent on society, but so are the majority of neurotypical adults. If they're capable of interacting with the outside world, having deliberate hobbies, etc, then while they may need extra/different support with many aspects of life, there will be areas where they don't need the support that society offers ordinarily. (I cannot tell you what areas those will be, but I'm confident there will be some.) Autistic children become autistic adults but, as with anyone, they need opportunities to mature and learn life skills if they are to become competent autistic adults. Don't assume that there's anything your daughters are incapable of. "Doesn't talk" doesn't mean "can't speak", which doesn't mean "can't understand speech", which doesn't mean "can't use language", which doesn't mean "can't communicate deliberately", which doesn't mean "can't understand communication". You might have preconceptions like "she won't be able to read until at least her first word, so there's no point teaching her": with autism, you have to throw that kind of reasoning out of the window, because there will be at least one thing that an autistic person is "unexpectedly" good at, and if they never get the opportunity to try, you'll never find that out. If you want them both to have a chance at an independent adulthood, you need to start them on the relevant skills early. Don't save everything until they're 15, because that's a lot to cram into a short space of time. Autistic people don't understand things the same way allistic people do, and not everyone's learned the (culturally-specific) "translating from the allistic explanation attempts" skill, so explanation likely needs supplementation with lots of practical experience. Example: when going shopping, start at the beginning of the process (going through the pantry / meal plan, identifying which things are needed, compiling a shopping list). Talk through what you're doing, and what your reasoning is. Try to make it a routine, where the same sorts of things happen each time, and decision points are exposited (e.g. "this time, we're driving"): routines are easier to understand, easier to predict, and more familiar, which can be comforting. Though, be aware that autistic people often have atypical sensory processing (https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences https://www.autism.org.uk/advice-and-guidance/topics/sensory...), which might prove too distracting to concentrate on learning: you might have to go shopping during the quiet hours, if the supermarket is ordinarily too intense; or, conversely, a dim supermarket might not be engaging enough. (You'll know your daughters better than I do, but I'm partly writing this for the benefit of others.) When stuff gets spilt, don't just clean it up: show them how to clean it (including where to get cleaning supplies). When getting breakfast, show them how to do it a few times a week, if they're not already doing it themselves. (Perhaps let them practice pouring measured amounts of washably-dyed water between various containers – plastic milk bottles, especially, are unintuitive near the top and the bottom.) Eight is getting a bit old for such things to be "socially acceptable", but fortunately, autistic people tend to care less about such things (modulo social anxiety), so if you don't say "practising these basic skills is for younger children and other people will judge you for it", that probably won't be an issue. Abuse is always a concern, but most women have to deal with that sort of thing: these aren't unusual worries for a parent of two daughters to have! Society will be better when they're older. Just try to keep them out of environments where one small group of people is judge, jury and executioner, such as prison-like "assisted living" facilities, or the "care" of ABA practitioners (see: https://starvingautist.com/aba-good-intentions-are-not-good-enough/ https://starvingautist.com/aba-good-intentions-are-not-good-...). (A good assisted living facility might be really helpful, though: it all depends on what each daughter's needs are when they're adults / no longer your dependents, which is hard to predict from how they are aged 8.) You might find these stories about an autistic(?) man with limited speech, working in a Swiss police station, interesting. https://notalwaysright.com/no-accident-kboom-explode-on-his-watch/278550/ https://notalwaysright.com/no-accident-kboom-explode-on-his-... https://notalwaysright.com/no-neglected-post-on-his-watch/300126/ https://notalwaysright.com/no-neglected-post-on-his-watch/30... https://notalwaysright.com/no-lapses-in-security-on-his-watch/303574/ https://notalwaysright.com/no-lapses-in-security-on-his-watc... They're written for an allistic audience, but the depiction feels faithful: given the situations depicted, I imagine I'd make the same decisions as Peter did (if I had enough self-confidence to work that job in the first place). They're also good depictions of autistic morality. Academic descriptions like https://www.spectrumnews.org/news/mind-blindness-affects-moral-reasoning-in-autism/ https://www.spectrumnews.org/news/mind-blindness-affects-mor..., while faithful descriptions, tend to interpret this as "mind blindness", but really it's just having higher standards, closer to what Eliezer Yudkowsky would call "heroic responsibility". (https://aarongertler.net/heroism/ https://aarongertler.net/heroism/ is probably a better description than anything Eliezer Yudkowsky's written.) This article writes: > The man traveling in Africa who encourages a friend to swim in a pond after seeing other tourists frolicking there is to blame for that friend being bitten by a mosquito and contracting malaria, [autistic research subjects] say, just as the girl who builds an igloo out of snowballs is to blame when icy snowballs crash on her friend’s head. This makes intuitive sense. Somebody who does not understand that mosquitos are common around stagnant or slow-flowing water such as ponds, and that malaria is endemic to many parts of Africa and can be contracted by mosquito bites, has failed to perform the most basic research, and it's negligent to provide uninformed advice about things to do. (Basing your recommendation off the activities of other tourists displays a severe deficit of theory of mind, but such groupthink is common among the allistic population.) Likewise, if building a structure out of heavy materials, you need to take into account the material properties of such a structure: practising engineering without a license is illegal in many countries, for exactly this reason (not that this heuristic is perfect: https://www.vice.com/en/article/n7jq98/man-fined-for-engineering-without-a-license-was-right-all-along https://www.vice.com/en/article/n7jq98/man-fined-for-enginee...). For some reason I can't explain, the authors chose to bookend this paragraph with: > But the moral conundrums in the second set of experiments flummoxed them. […] In case after case, they assign blame to individuals who intended no harm, failing to distinguish between intent and outcome. but any philosopher of ethics will tell you that this is an incredibly defensible position, and many will tell you that the standard allistic position makes less sense. Academia – and society in general – labels as a deficit what is actually just a failure to understand allistic nonsense that nobody ever bothered to teach. It might be worth learning a sign language (ideally one used in your local culture), and/or investing in an AAC system (see https://www.rachelmadel.com/blog/stimming-and-aac https://www.rachelmadel.com/blog/stimming-and-aac for a common misconception).

burnte 2y ago

Yep, for decades thought genes were everything, then we started to realize epigenetics and proteomics are even more important. DNA is the code, and as we all know code can run differently in different environments.

wizzwizz4 2y ago

Those studies were designed to confirm Professor Sir Simon Baron-Cohen's "extreme male brain" theory (which, by the way, is a crock of shit). High androgen levels and high oestrogen levels are associated with autism (ref: https://doi.org/10.1038/s41380-019-0454-9 https://doi.org/10.1038/s41380-019-0454-9) and there's no reason to believe the arrow of causality points in any particular direction. I recommend you not focus overmuch on why your kids are autistic. (The most likely reason is that one or both of the biological parents are autistic.) Disabilities are contextual, and autism can be a significant disability if you want to "live a normal life", so the best approach is not to impose arbitrary constraints and unrealistic expectations on them. (And really, who wants to keep up with the Joneses, anyway? https://xkcd.com/308/ https://xkcd.com/308/) If you're interested in the topic generally, by all means learn about it, but none of this will help your daughters. There's no way to "cure" autism, because there's nothing to cure: it's just a way to describe a way that some people are. (Though some associated conditions, such as difficulty focusing can be treated with medication (I'd recommend not putting kids on ADHD drugs, because it's hard to distinguish between a genuine problem with cognition and mere excitable boredom from the outside.), others (e.g. hypermobility, coordination issues) can be mitigated with physiotherapy, and yet others (e.g. social anxiety, miscalibrated hunger / thirst detectors) can be alleviated with explanation, strategies, and practice.) A good part of the differences in "severity" of their "autism symptoms" will be the extent to which they grok the things in question. For example, if you're not interested in verbal communication, you're not going to study it intensely to pick up on how other people instinctively behave, so you won't learn to imitate it. No amount of wanting what verbal communication can get you will give you the intrinsic motivation you need for (years of) extended, generalisable study – at least, not unless you happen to be good at long-chain motivation. If, however, there's a fun game you like, and playing that game involves developing proficiency in the (inherently boring) skill… well, there's a reason so many kids learn English by playing competitive video games.

djhope99 2y ago
Thanks for taking the time to write this. I appreciate it, I read it to my wife and she agrees we should stop thinking about the why. It’s not so much that we want them to be normal or are particularly worried about that, we are very anxious though about what happens to them when we die and what abuse they might face.
- wizzwizz4 2y ago
  I will interpret your gratitude as license to infodump. (I have many thoughts, and few parents-of-children to share them with.) They're not going to be dependent on you their whole lives. They will be dependent on society, but so are the majority of neurotypical adults. If they're capable of interacting with the outside world, having deliberate hobbies, etc, then while they may need extra/different support with many aspects of life, there will be areas where they don't need the support that society offers ordinarily. (I cannot tell you what areas those will be, but I'm confident there will be some.) Autistic children become autistic adults but, as with anyone, they need opportunities to mature and learn life skills if they are to become competent autistic adults. Don't assume that there's anything your daughters are incapable of. "Doesn't talk" doesn't mean "can't speak", which doesn't mean "can't understand speech", which doesn't mean "can't use language", which doesn't mean "can't communicate deliberately", which doesn't mean "can't understand communication". You might have preconceptions like "she won't be able to read until at least her first word, so there's no point teaching her": with autism, you have to throw that kind of reasoning out of the window, because there will be at least one thing that an autistic person is "unexpectedly" good at, and if they never get the opportunity to try, you'll never find that out. If you want them both to have a chance at an independent adulthood, you need to start them on the relevant skills early. Don't save everything until they're 15, because that's a lot to cram into a short space of time. Autistic people don't understand things the same way allistic people do, and not everyone's learned the (culturally-specific) "translating from the allistic explanation attempts" skill, so explanation likely needs supplementation with lots of practical experience. Example: when going shopping, start at the beginning of the process (going through the pantry / meal plan, identifying which things are needed, compiling a shopping list). Talk through what you're doing, and what your reasoning is. Try to make it a routine, where the same sorts of things happen each time, and decision points are exposited (e.g. "this time, we're driving"): routines are easier to understand, easier to predict, and more familiar, which can be comforting. Though, be aware that autistic people often have atypical sensory processing (https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences https://www.autism.org.uk/advice-and-guidance/topics/sensory...), which might prove too distracting to concentrate on learning: you might have to go shopping during the quiet hours, if the supermarket is ordinarily too intense; or, conversely, a dim supermarket might not be engaging enough. (You'll know your daughters better than I do, but I'm partly writing this for the benefit of others.) When stuff gets spilt, don't just clean it up: show them how to clean it (including where to get cleaning supplies). When getting breakfast, show them how to do it a few times a week, if they're not already doing it themselves. (Perhaps let them practice pouring measured amounts of washably-dyed water between various containers – plastic milk bottles, especially, are unintuitive near the top and the bottom.) Eight is getting a bit old for such things to be "socially acceptable", but fortunately, autistic people tend to care less about such things (modulo social anxiety), so if you don't say "practising these basic skills is for younger children and other people will judge you for it", that probably won't be an issue. Abuse is always a concern, but most women have to deal with that sort of thing: these aren't unusual worries for a parent of two daughters to have! Society will be better when they're older. Just try to keep them out of environments where one small group of people is judge, jury and executioner, such as prison-like "assisted living" facilities, or the "care" of ABA practitioners (see: https://starvingautist.com/aba-good-intentions-are-not-good-enough/ https://starvingautist.com/aba-good-intentions-are-not-good-...). (A good assisted living facility might be really helpful, though: it all depends on what each daughter's needs are when they're adults / no longer your dependents, which is hard to predict from how they are aged 8.) You might find these stories about an autistic(?) man with limited speech, working in a Swiss police station, interesting. https://notalwaysright.com/no-accident-kboom-explode-on-his-watch/278550/ https://notalwaysright.com/no-accident-kboom-explode-on-his-... https://notalwaysright.com/no-neglected-post-on-his-watch/300126/ https://notalwaysright.com/no-neglected-post-on-his-watch/30... https://notalwaysright.com/no-lapses-in-security-on-his-watch/303574/ https://notalwaysright.com/no-lapses-in-security-on-his-watc... They're written for an allistic audience, but the depiction feels faithful: given the situations depicted, I imagine I'd make the same decisions as Peter did (if I had enough self-confidence to work that job in the first place). They're also good depictions of autistic morality. Academic descriptions like https://www.spectrumnews.org/news/mind-blindness-affects-moral-reasoning-in-autism/ https://www.spectrumnews.org/news/mind-blindness-affects-mor..., while faithful descriptions, tend to interpret this as "mind blindness", but really it's just having higher standards, closer to what Eliezer Yudkowsky would call "heroic responsibility". (https://aarongertler.net/heroism/ https://aarongertler.net/heroism/ is probably a better description than anything Eliezer Yudkowsky's written.) This article writes: > The man traveling in Africa who encourages a friend to swim in a pond after seeing other tourists frolicking there is to blame for that friend being bitten by a mosquito and contracting malaria, [autistic research subjects] say, just as the girl who builds an igloo out of snowballs is to blame when icy snowballs crash on her friend’s head. This makes intuitive sense. Somebody who does not understand that mosquitos are common around stagnant or slow-flowing water such as ponds, and that malaria is endemic to many parts of Africa and can be contracted by mosquito bites, has failed to perform the most basic research, and it's negligent to provide uninformed advice about things to do. (Basing your recommendation off the activities of other tourists displays a severe deficit of theory of mind, but such groupthink is common among the allistic population.) Likewise, if building a structure out of heavy materials, you need to take into account the material properties of such a structure: practising engineering without a license is illegal in many countries, for exactly this reason (not that this heuristic is perfect: https://www.vice.com/en/article/n7jq98/man-fined-for-engineering-without-a-license-was-right-all-along https://www.vice.com/en/article/n7jq98/man-fined-for-enginee...). For some reason I can't explain, the authors chose to bookend this paragraph with: > But the moral conundrums in the second set of experiments flummoxed them. […] In case after case, they assign blame to individuals who intended no harm, failing to distinguish between intent and outcome. but any philosopher of ethics will tell you that this is an incredibly defensible position, and many will tell you that the standard allistic position makes less sense. Academia – and society in general – labels as a deficit what is actually just a failure to understand allistic nonsense that nobody ever bothered to teach. It might be worth learning a sign language (ideally one used in your local culture), and/or investing in an AAC system (see https://www.rachelmadel.com/blog/stimming-and-aac https://www.rachelmadel.com/blog/stimming-and-aac for a common misconception).