14 ms·
For those who's instinctive approach to autism (or other flavors of significant neruodivergence) is to treat it as something that has inherent tradeoffs, or as
by tenacious_tuna 2y ago
For those who's instinctive approach to autism (or other flavors of significant neruodivergence) is to treat it as something that has inherent tradeoffs, or as something that "obviously" people would want to manage or choose to not have when given the option: I highly recommend this article [1] and the book written by the same author, to recontextualize autism (in specific) and neurodiversity (in general) not as things to be managed but as forms of diversity in the human expression to be wholly welcomed in wider society.
Put differently: Autism is not something to be managed away.
> I don't think anyone who was somehow given the choice of autism or no autism at birth would choose autism would they?
I test in the statistically-likely range for autism on multiple diagnostic tests, though I don't carry a diagnosis from a psychiatric professional, so grain of salt, etc; but I find this kind of hypothetical offensive and degrading. It rings so much of how we approached queer identities throughout the years: blindly assuming that because wider society has difficulty interacting with autistic or otherwise neurodivergent people that THOSE PEOPLE would prefer to be like those more neurotypical members.
I like my brain. I don't want it to change. I don't want to be different. I don't want to be treated as someone suffering some condition, or like there's "tradeoffs" in my experience of the world that're any more significant or worthy of commentary than anyone else's experience of the world.
[1]: https://neuroqueer.com/throw-away-the-masters-tools/ https://neuroqueer.com/throw-away-the-masters-tools/
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- llamaLord 2y agoJust be careful with this line of reasoning though please. It's already hard enough for people outside of the USA to access treatment for things like ADHD when they want to, it doesn't help to have a bunch of people walking around saying "it's not actually a disadvantage at all... It's REALLY more of a gift". Without my ADHD meds, I have ZERO ability to actually leverage the "gift" part...
- outside415 2y agothose ADHD meds are exceptionally addictive and long term damaging to your body/heart/mind. be careful.
- wizzwizz4 2y agoI imagine it depends on the meds, but I haven't heard about any "exceptionally addictive" ones. Source?
- _yb2s 2y agoThere are a ton of different classes of ADHD medications that are all very different. The most popular- stimulants like adderall and ritalin are probably the most well studied psychiatric drugs in history, and not without some risk of adverse effects, but overall are quite safe even for young kids. Untreated ADHD itself is far more dangerous than any of the medications: high rates of mortality, suicide, addiction, job loss, relationship difficulties, car accidents, etc. There is also some evidence that giving children stimulant medications for ADHD can make it less likely that they will continue to have ADHD as adults.
- astrange 2y agoThe non-stimulant ADHD drugs actually all have worse side effects than the stimulant ones, and they're harder to stop taking. You can quit Vyvanse cold turkey or take it as needed and be pretty OK, but if you quit Strattera it takes weeks to work again once you start it. And you can't quit Intuniv without titrating off for a week or two or you'll feel pretty sick.
- jauer 2y agoMaybe addictive to people without ADHD… They are so unaddictive to people with ADHD that remembering to take them can be challenging.
- _yb2s 2y agoI think it has a lot to do with the dose and delivery method... if you take massive doses or inject/snort the medications like people trying to get high on stimulants, the rate at which the drug takes effect causes euphoria, which is addicting. There is no euphoria with properly taken low dose stimulant medications for ADHD- they aren't "enjoyable."
- outside415 2y agowell said. everything needs to be diagnosed and treated with drugs. it is better to persevere with CBT, meditation, and self discipline than to cop out to some prescriptive drug regimen because neurodivergence is viewed as something a drug company can profit of off.
- cogman10 2y agoThis is not what treatment looks like for autism. There are cases where drugs might be used, for teens with severe emotional problems or kids with seizures (which are common in people with autism). However, that's not what treatment looks like for everyone (or I dare say most people diagnosed with autism). By and large, treatment for autism is centered around therapy. Occupational, food, physical, and behavioral are all common treatment routes for someone with autism. There's no prescription drug regimen for autism.
- outside415 2y agoA lot of people I’ve met the neurodivergent camp end up on a soup of anti depressants, adhd meds, and other random antis. All because they are treating symptoms rather than the underlying issue.
- cogman10 2y ago> All because they are treating symptoms rather than the underlying issue. There is nothing that treats ASD directly. But there sure are a whole host of charlatans that will try to convince desperate parents otherwise. As with pretty much every psychological problem the best we have is treatments to make the symptoms livable. Even what you mentioned earlier could be considered a treatment that addresses the symptoms not the underlying issue. For some people, meditation and exercise only go so far. Shaming people/parents for needing medication and going with the "You just need to try harder" is what gets people killed. Medication isn't a personal failing.
- threecheese 2y agoSame, -ish. I do wish I had this knowledge early in life - it’s been unnecessarily hard. But I think that while “aut-ish” is difficult, severe autism has an entirely different impact and we must protect these people: a “cure” would have a huge positive impact on so many, and in order to have a cure we first need to admit there is a disease. I have no problem being perceived as “queer” (after all, I’ve been “weird” or “odd” for 40 years, and synonyms can’t hurt that much). I feel almost lucky - sure, life has sucked and I’ve missed out on so much, but I have a few things that really get my juices flowing and I feel bad for those who don’t. One of those things is currently in demand by society, and I am happy to take their money in exchange for software that came from my brain. Edit: thanks for that link, I’d never heard that term and I like it.
- simmerup 2y agoProbably depends on your perspective. As someone with an autistic niece, it seems very much a condition that requires management
- yareal 2y agoIf we structured society to provide that management and support, would that change your opinion? If the government offered community caregivers who would come and assist parents with autistic children, helping both ease the load and also teaching skills to the kids and parents, do you think that might change the calculus? Our options aren't just "cure", and status quo. We can choose to adapt in other ways.
- throwaway2037 2y ago> If we structured society to provide that management and support, would that change your opinion? Severely disabled people receive a lot of gov't support in most highly developed countries (G7 levels). I am confused by your question. Society already does this pretty well in these wealthy countries.
- simmerup 2y agoGovernment provided assistance? That sounds like management to me
- appletrotter 2y agoI think your ideas around ‘tradeoffs’ here are very confusing. Tradeoff is such an intrinsically correct term to use here. People with autism/adhd are worse at some tasks, and better at others. That’s what a tradeoff is. There are similar discussions around deafness. Deaf people often don’t like to see their deafness as a disability, but as something that defines their culture and experience. That’s still a tradeoff. You can decide to give your child cochlear implants, and integrate them into mainstream schooling - or you can opt out of that, and integrate them into the deaf community. That’s the very definition of a trade off, and it’s a very valid and difficult question. The issue I have with your take is that its adoption can reduce people’s feelings of agency around their way of life. What works for you isn’t necessarily universal. The idea of a tradeoff is that the same decision can have different meaning to people in varying contexts. You might suggest that people have been conditioned to want to be ‘normal,’ but that is an oversimplification that ignores individuals’ agency, and again, unique contexts.
- smeej 2y agoIt's so hard too because the people tasked with making the tradeoff decision are almost always the parents of the child, because the most effective interventions have to take place before the child can make her own decisions. They love and desperately want the best for their child, but likely have little direct experience with either side of the set of tradeoffs. The main exception seems to be deaf parents of deaf children, but I don't know what the data says about what they usually choose.
- throwaway2037 2y ago> You can decide to give your child cochlear implants, and integrate them into mainstream schooling - or you can opt out of that, and integrate them into the deaf community. The use of "or" here reads as exclusive: one or the other, but not both. In the last 15 years, since child cochlear implants became mainstream, many children have taken both routes, simultaneously. This is most frequent when one or both of their parents are also deaf. They are full members of their deaf community (learn to sign, plus all of the associated culture), and they are full member of the mainstream, non-deaf community (learn to listen and speak, plus all of the associated culture).
- reuben_scratton 2y agoI have two severely autistic children who cannot talk and who need lifelong care. That's the REAL autism, the one Leo Kanner identified in 1943. Not the rebranded Aspergers with extra rainbows. I wouldn't wish real autism on my worst enemy.
- cogman10 2y agoYeah, I also have a severely autistic child. Unfortunately, I feel like the autism community's search for acceptance often puts on blinders to such individuals. That is particularly frustrating because those vocal about autism acceptance often do it while castigating therapy as if it's always a horrible thing aimed at hiding their true selves. We are working as hard as possible so that our child can hopefully advocate for themselves when we are worm food. If that means "breaking" their true selves to teach them to communicate (speech therapy), or using behavioral therapy to get them to brush their teeth (even though they hate everything about it), so be it. I get why the DSM widened the definition, but what it means to have severe autism is very different from what it means to have mild autism. If my child has deep thoughts, they have very little ability to express them.
- nicoburns 2y ago> If my child has deep thoughts, they have very little ability to express them I'm sympathetic to much of your comment, but the "if" in this sentence really made me wince. Seems to me there's a lot of evidence that almost everyone with autism (including those with very "severe" autism) do indeed have deep intelligent thoughts and just can't communicate them (i.e. that autism is primarily a sensory disorder rather than a cognitive one). The best example I have of this is someone who was entirely non-verbal their entire life, but managed to write an entire book when taught to communicate via pointing at letters on a printed "keyboard" (perhaps someone else can find the reference- it was on HN a few years ago) Which also points to something which I think is really key to helping those with autism: that often it is not about pushing past their boundaries to get them to do things in a "normal" way, but about working around them and finding other ways for them to engage with the world productively. That might mean writing instead of speaking. Or using mouthwash instead of brushing their teeth. You might well have tried all of these kind of things, but if you haven't then please consider it!
- o11c 2y ago> neurodiversity (in general) not as things to be managed but as forms of diversity in the human expression to be wholly welcomed in wider society. > Put differently: Autism is not something to be managed away. That's an abominable take. It only makes sense if you're willing to ignore the massive suffering and ongoing trauma. I'll refrain from explicitly invoking Godwin but the comparison is obvious.
- parpfish 2y agoI always cringe when people try to apply this take to something like Downs. It’s always a bunch of pandering about how they are happy and have a childlike sense of wonder
- yareal 2y agoWhat about when people with Down's syndrome say they are living fulfilling lives? Obviously paternalistic "look how happy they are" is a shit take, but "I'm genuinely content with my life" from a person with Down's syndrome seems like a pretty important voice to listen to, surely.
- mrangle 2y ago"I'd normalize if I could" and "People with Type 1 Autism should have more social room" can be held at the same time. This isn't always the case, but much of the time the trauma is due to an ill fit rather than being inevitable. An example of inevitability might be the trauma experienced due to unexpected deaths of loved ones. An "ill fit" needs no elaboration. The few people with autism who manage to succeed and thereby improve their environment seem to suffer less frequent trauma, if any unless it is of the inevitable type. And then, for example, would people with autism have such an unusually difficult time with loss if their support network wasn't so tenuous? Maybe, or maybe to some lesser degree. I think that a reasonable starting point would be the question: if someone with type 1 autism could have everything that they wanted including socially, would they still want to change their nature? I think that responses would be mixed. For example, take the young autistic woman who just underwent assisted suicide in the Netherlands. Does it seem more likely that her nature was fatally flawed or that her society didn't think to get off of its ass, sing to her in unison, and then make room?
- utensil4778 2y agoThis is a remarkably privileged take. Maybe you can go about daily life and relationships with no major hurdles, but plenty of us have gone though a lifetime of suffering to barely scrape through daily life on our own. Even more cannot live an independent life and require a caretaker forever. Some can't talk, can't feed or dress themselves.
- yareal 2y agoI've been through some shit due to my autism, including a period of homelessness and trauma. It's caused me massive amounts of pain over the decades, but... despite needing support to function, I'd still keep it. I don't think it's necessarily wrong for people to say they are autistic and would stay autistic given the choice. I don't think it's wrong to say the opposite. I get much, much more uncomfortable when that choice is external. If my parents knew I would be autistic, they would have aborted me. I think I've been a force for good in the world even with my trauma. I dunno, that makes me sad to think about.