It's very disappointing. I hate to see support groups inundated with non-issues like "as an autist I love ordering chocolate milk at restaurants even though the social norm is to drink alcohol lol xD!" (...to be clear I don't even disagree, it's just a trivial topic) instead of actual concerns about things that matter, such as forming/maintaining social connections or education/career stuff.
Would someone whining about the name Asperger Syndrome and getting mad when another autist says it's not a big deal be part of that? I've had a person or two get mad at me for saying I have more important things to worry about than the name of my disability. Hans Asperger is dead. It's not called Hitler Did Nothing Wrong Syndrome.
I'd be more worried about auties not being able to get accommodations because employers are either dickheads or can't be bothered. Policing language when someone's only talking about themselves is a waste of time when so many autists can't hold down a fucking job. "You can't control other people" and "pick your battles" are two phrases I feel are very pertinent here.
Would someone whining about the name Asperger Syndrome and getting mad when another autist says it's not a big deal be part of that? I've had a person or two get mad at me for that.
Hans Asperger is dead. It's not called Hitler Did Nothing Wrong Syndrome. I'd be more worried about auties not being able to get accommodations because employers are either dickheads or can't be bothered. Policing language when someone's only talking about themselves is a waste of time when so many autists can't hold down a fucking job.
Yeah, policing of what's socially accepted is a huge thing in those groups. Ironic.
I can understand people who want to do away with Asperger's because they think it's too similar to autism and should be considered under the same category, since I also think that splitting into multiple autism-lite diagnostic labels like PPDNOS and SPCD is unnecessary (I just think they should have some term to distinguish between "talks a little too much about trains" and "smashes their head on the wall while babbling"). But people who only care about spitting on Hans Asperger's grave are just looking for something to get mad over. Sometimes unethical people lead to helpful advances, that's life. Ever hear about the "father of gynecology"? I don't agree with it, but even if you believe that it's not ok to have something be named after a bad person, that doesn't justify deleting the diagnosis itself because plenty of things simply get renamed for that exact reason.
I genuinely think a lot of seething comes from people (on both sides) misunderstanding what is being talked about when someone says "autism is just a difference" and "autism is a disorder that deserves a cure" because the same term is being used for many very different phenomena. The former hears the latter and thinks they're being told that they ought to be literally culled from the world just for the crime of loving bottle caps or number theory, the latter hears the former and thinks that they're being told that their mute child who gave himself a concussion should continue to suffer. This would be alleviated immediately if we could have different terms for scenarios which are very different even if they share some features in common.
I visit a MD who specializes in the physical health of autists, who ranted to me about thinking that there is an intentional plot to make discussions about autism confusing and muddied because there are environmental and nutritional factors contributing to autism that people in power want to cover up, and that axeing Asperger's and pushing neurodiversity to shift attention away from people who need help is part of that. I will not comment on or promote this belief because it's not my area and I'm just trying to see a doctor, but I thought it was a unique take on the situation.
Another trigger people get all twisted up over is the use of the puzzle piece as a symbol for autism, because "autism speaks uses it and they're... le bad!!" I agree that Autism Speaks is an organization that is not above criticism (they have a history of putting out distasteful blackpill content, and they do seem to lack resources for autists themselves rather than their parents) but it's so unnecessary to get mad at the puzzle piece over it. They didn't even invent the puzzle piece symbol, it came from some other organization. I have seen various tinfoils about how the puzzle piece allegedly means various derogatory things like "autists are missing a piece of their humanity" or "autists are inscrutable freaks" but to my knowledge I have found no sources to confirm this besides whiners, so they seem to be retroactively uncharitable interpretations. And come on... Being a puzzle piece person is objectively more fun and more memorable than that ugly rainbow infinity sign that looks like the hastily designed logo for a gay math department student club. It's a cute and unique symbol that you can get creative with, don't you guys like that?
There are very sparse resources on helping adult autists do basic things like making friends or managing school/a job, but virtually no content exists regarding the female autist and the menstrual cycle/fertility/sex, dating/marriage as a woman, pregnancy/motherhood, misogyny, differences in general societal and communication norms for men and women, or other gendered topics where they're likely to be locked out from normie women's conversations and to have unique experiences.
Speaking from experience, it's generally assumed that adult female autists don't need to be considered in that way because they're infantilized to absolute shit. I've had people express shock that I have had academic success, held relationships, or just generally enjoy normie girly shit. As if I'm some sort of perpetual toddler and not an adult with a life.
I think the main work to be done is to create more support and recognition for high-functioning female autists who are living on their own and going through regular milestones but still need help and lack any resources. Occupational therapy type shit for the struggles of adult female life might be a good idea? IDK I went to OT as a teenager and they could barely figure out how to adjust the curriculum to teach me shit like putting in my earrings and applying eyeliner
IDK I went to OT as a teenager and they could barely figure out how to adjust the curriculum to teach me shit like putting in my earrings and applying eyeliner
I think most physical and occupational therapists aren't trained to deal with autistic people's problems. I tried seeing a physical therapist for my coordination problems, and I kept trying to explain to her a lot of what looked like poor performance was due to my disability, and the fact that having an appointment at 4pm is going to have me doing stuff when I'm tired, therefore not understanding directions correctly. It didn't really seem to register with her; she'd just sort of blankly repeat what I said, but not actually address it.
Yeah, agree. It’s weird because I feel like with the romanticization of the disorder and all of these self dxers giving it exposure (especially the high-functioning variety) you’d think that there would be better resources
I don’t think i’d ever go back to therapy tbh, i’ve mostly figured out what strategies work for me, and I just avoid tasks/situations that are outside of those. Plus, I hate it being so public. I don’t tell people anymore because they just think it’s a cute accessory or personality trait or some bullshit
Yeah, agree. It’s weird because I feel like with the romanticization of the disorder and all of these self dxers giving it exposure (especially the high-functioning variety) you’d think that there would be better resources
I don’t think i’d ever go back to therapy tbh, i’ve mostly figured out what strategies work for me, and I just avoid tasks/situations that are outside of those. Plus, I hate it being so public. I don’t tell people anymore because they just think it’s a cute accessory or personality trait or some bullshit
I don't agree with it, but even if you believe that it's not ok to have something be named after a bad person, that doesn't justify deleting the diagnosis itself because plenty of things simply get renamed for that exact reason.
It wasn't removed because Hans was a Nazi - it was removed because the people in charge didn't think there were enough traits to warrant distinguishing between Aspergers and autism.
I'm not sure what the differentiating criteria for assigning a level is, though. Is it experiencing more or less than a certain number of a huge amount of traits? Like, two or three is Level 1, four to five is Level 2, and six or more is Level 3? It would make sense, but the way some people talk about it makes the levels seem arbitrary.
I'm not sure what the differentiating criteria for assigning a level is, though. Is it experiencing more or less than a certain number of a huge amount of traits?
From my understanding it's less about trait quota (that's for diagnosis) and more about support. Level 1 can self-sustain and lead a relatively normal life (the manic pixie dream girls of the world), Level 2 may need to be monitored more or not live on their own but can still have enough agency to self-determine, and Level 3 needs constant care/cannot live on their own + usually can't self-determine because they're exceptionally disabled (think your typical retard portrayal-- what people associated with ASD in the '90s)
It wasn't removed because Hans was a Nazi - it was removed because the people in charge didn't think there were enough traits to warrant distinguishing between Aspergers and autism.
Yeah and I can see the clinicians' reasoning in that even if I think there are flaws. I'm referring to the phenomenon that for some reason laypeople in (especially female-centered) autism groups seethe hard if you so much as mention Asperger's, even if you were actually diagnosed with that label back when it existed. They never say "I don't think it's diagnostically significant" they always say "that term was invented by a nazi who wanted to genocide autists" as if speaking his name makes fascism a grow little stronger.
I visit a MD who specializes in the physical health of autists, who ranted to me about thinking that there is an intentional plot to make discussions about autism confusing and muddied because there are environmental and nutritional factors contributing to autism that people in power want to cover up, and that axeing Asperger's and pushing neurodiversity to shift attention away from people who need help is part of that. I will not comment on or promote this belief because it's not my area and I'm just trying to see a doctor, but I thought it was a unique take on the situation.
I have heard some auties benefit from following a diet plan, so there might be some truth to it. Usually it's mentioned in the context of profound autism.
Sadly, as for many autists' eating habits, there is a vicious circle - and it doesn't have to do just with the texture issues that can leave them with eating only dinosaur nuggets with frites and such.
I knew one who had no issues with texture, but was absolutely unable to make himself anything, not even prepare a cup of tea or coffee, he just always waited for someone else to make some and asked if they can make some for him too. He always finished his work at about 3AM and the fact all shops and restaurants were closed caught him surprised every day, so after going around all the shops he ended up at the same 24/7 gas station, so his diet consisted of hotdogs, shitty sandwiches and entire bars of chocolate. It's likely still like this, I don't talk to him anymore.
Long-term stress and lack of sleep related to messed up working or studying shedule and being overworked - another thing that significantly worses symptoms of autism. Unfortunately, if one has it bad, they can't see anything wrong.
I have heard some auties benefit from following a diet plan, so there might be some truth to it. Usually it's mentioned in the context of profound autism.
Some say that autism is correlated with gastrointestinal sensitivities, and that even if you're not having immediate reactions it may be like a poison chip damage thing where you progressively take -1 HP from trigger foods, which can make you feel bad over time without realizing. There are claims that autists can benefit from gluten-free and dairy-free (more specifically casein-free). It isn't supposed to make you stop having autism per se but the thinking is that if your body is experiencing low-level inflammation then you will mentally feel less able to cope, so it can allegedly help by making you less subconsciously stressed. There are also new supplements for autists under a similar line of reasoning, I know of two brands.
I first found out because I visited a city with a restaurant whose gimmick is that they want to support autists and their families, so they promise no gluten or casein while intentionally employing autists to help them have skills and a job. It was nice, the food was very good. I thought it was funny but sweet that they were selling awkward deviantArt-tier anime artwork that the employees made as a way for people to donate to their livelihood.
It's still a fresh topic so I think there isn't much research on whether it helps and who it helps, it's just a claim with some anecdotes so far. The people at the restaurant were not severely disabled, they were functional but visibly autistic (I would compare it to classic Chris, except they were good-natured and hard-working). I know one diagnosed autist who typically passes very well as not having autism but personally reports benefits from the diet modifications. At the end of the day it is relatively low-risk to try a new diet or new supplements for a while to see if it helps.
Seconding you on this one. Diet is a much bigger factor than people seem to consider. The Standard American Diet is not great for you in general, but if - for example - you have a biological predisposition to "burn through" certain vitamins, minerals, and/or amino acids, or if you lack certain enzymes, then you're going to be worse off than the average normie who is already suffering.
Do you guys recommend any specific diets, foods, supplements, etc? I've known about the brain-gut link for a while, but haven't really delved enough into research.
I want to eat healthier, but not sure where I should start and what I should prioritize. Two of my favorite foods, eggs and broccoli, I know are filled with lots of good vitamins.
Do you guys recommend any specific diets, foods, supplements, etc? I've known about the brain-gut link for a while, but haven't really delved enough into research.
I want to eat healthier, but not sure where I should start and what I should prioritize. Two of my favorite foods, eggs and broccoli, I know are filled with lots of good vitamins.
This is what I was recommended, obligatory YMMW I-am-not-a-doctor-this-is-not-medical-advice-don't-be-stupid disclaimer:
Do not eat obviously unhealthy stuff with dyes, artificial additives, HFCS, loads of cheap oil, etc. and try to eat home-cooked food as much as possible.
Some claim a link between autism and gluten-free and dairy-free. You can try it for a month or two if that's accessible to see if it changes anything.
Vitamin D is needed in lots of urban/Northern people but autists especially tend to not get out as much.
Iron is needed for many women, especially if you have heavy periods. The best way to know how deficient you are is to get ferritin tested via blood test. Official recs will say that <15 is deficient but that's actually extremely deficient, really you can feel worse by like 50 and want to aim for 100+. Iron supplements suck though so if you are very low try to see if you can get iron infusions anywhere. Meat is the ideal source but keep in mind that if you are super low despite not being vegetarian, your issue is probably not intake but gut absorption and/or wastage (losing lots of blood).
Vitamin B, the specialty supplement I'm prescribed is pretty granular about what subtype and has a crazy amount, but excluding that you're probably better off seeking rich food sources (Alaskan salmon, eggs, leafy greens, etc.) because normie store B vitamins can be both low quality and expensive.
Fish oil supplements
Magnesium supplements
Taking an IgE allergy panel if possible to see if you have subtle allergic reactions to anything and eating accordingly
Do you guys recommend any specific diets, foods, supplements, etc? I've known about the brain-gut link for a while, but haven't really delved enough into research.
I want to eat healthier, but not sure where I should start and what I should prioritize.
Do not eat obviously unhealthy stuff with dyes, artificial additives, HFCS, loads of cheap oil, etc. and try to eat home-cooked food as much as possible.
Some claim a link between autism and gluten-free and dairy-free. You can try it for a month or two if that's accessible to see if it changes anything.
Vitamin D is needed in lots of urban/Northern people but autists especially tend to not get out as much.
Vitamin B, the specialty supplement I'm prescribed is pretty granular about what subtype and has a crazy amount, but excluding that you're probably better off seeking rich food sources (Alaskan salmon, eggs, leafy greens, etc.) because normie store B vitamins can be both low quality and expensive.
B-complex > Any one B vitamin on its own.
B-vitamin deficiencies make you crazy, so if you're already jumpy or touchy, not having enough B will make your existence way more difficult.
Pick the right one for you, too. For some reason some people do really poorly with generic "fish oil" supplements, but do fine with something like cod liver oil. I've even seen people's anxiety get significantly worse after taking fish oil for a week.
My going theory is that some of the fish oil is rancid, but de-stinky-fied so you don't notice it's rancid, and the rancidity makes you sick.
Dark chocolate is a magnesium supplement. 1oz = ~65mg of magnesium
Magnesium can also be absorbed through the skin, so taking regular baths in something like Dr. Teal's will get it into your body that way.
Egg kick ass, they're one of the best things you can eat.
Eat your broccoli with animal fat, btw, it'll help you absorb the fat-soluble vitamins better.
I first found out because I visited a city with a restaurant whose gimmick is that they want to support autists and their families, so they promise no gluten or casein while intentionally employing autists to help them have skills and a job
There's a place like that where I grew up, but the food isn't tailored to the needs of auties; they just employ and accommodate them. I saw a profoundly autistic boy working there once.
The guy who asked me about KF when I was at work somewhere else came from this place.
I'd wager that if you have ibs/celiac then your "fuse" is going to be much shorter. If your tummy hurts or you're experiencing constant low-level inflammation 24/7, it's going to make everything else harder.
e.g.
Guts feel bad → Little bit tired a little more quickly → Everything feels more intense than it would if I wasn't in pain → Things you could tolerate if you felt better are no longer tolerable → FUCK THIS FUCKING TAG ON MY FUCKING SHIRT I CAN FEEL IT RIGHT NOW AND YOU HAVE THE AUDACITY TO ASK ME TO RESPOND TO A WORK EMAIL? FUCK YOU I'M GOING TO GO HIDE UNDER A TABLE.
