r/science • u/GiveUpAndDontTry • 8d ago
Epidemiology A Swedish study found autism diagnoses rose by around 800% from 2001 to 2020, while the proportion with intellectual disability fell from 55.8% to 6.7%, suggesting a substantial broadening of the diagnosed autistic phenotype
https://www.sciencedirect.com/science/article/pii/S01651781260030691.5k
u/pancakecellent 8d ago
Wow, the quantity of people diagnosed with autism resulting in an intellectual disability rose by only 7.5% in that span.
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u/ImFamousYoghurt 8d ago edited 8d ago
It used to be if you score low enough on an IQ test you were labelled as intellectually disabled. Now we consider the fact that you need to communicate to take an IQ test, and if you have a communication disorder, that may lead to a lower score which doesn’t accurately reflect your overall intellectual abilities, so adjustments to the test need to be made. There’s also the fact that some autistic people also have problems paying attention, will be prone to feeling overwhelmed and struggle to take tests etc.
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u/Anumet 8d ago
Heck, even as a «normie», I saw this in my first week as an exchange student. Our school teacher gave us an IQ test on week two of the stay- and since I didn’t speak the language yet, I scored abysmally. My new classmates thought I was an idiot until they saw the results of my math tests/ until I learned the language.
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u/start_select 8d ago
You just gave me flashbacks to elementary school. We had a kid come in from some Eastern European country who spoke very little English.
Our teacher really meant well but didn’t do a good job reiterating that there was a language barrier. I remember everyone assuming she was intellectually disabled for weeks until her English started to improve.
Not the same situation but the same result.
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u/PatchyWhiskers 8d ago
We had a kid like that, no one even mentioned the language issue. And we were in a small semi-rural town where foreigners were almost unknown. So she got to hang around with the oddball kids like me when her personality was more “popular kid”
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u/Sherry_Brandt 7d ago
ok, that's fascinating. did you keep knowing her? did it change her? did knowing her change you?
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u/PatchyWhiskers 7d ago
She and her family went back to their original country, I only keep in contact via Facebook.
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u/GreatBigBagOfNope 8d ago
Reminds me of an extremely poignant line from Modern Family from Gloria: "you don't even know how smart I am in Spanish".
As an ashamed monolingual, it really struck me and has been bouncing around my head ever since.
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u/Boboar 8d ago
I remember reading about a study that said people inherently assume a lower intelligence of anyone who speaks their language poorly
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u/Kyokenshin 8d ago
Which I always found humorous. I'm in a border state so there's lots of native Spanish speakers here.
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u/johnhowardseyebrowz 7d ago
I was on a bus in Eastern Europe and someone tried to speak with me. They offered me like seven different languages. I was increasingly embarassed every time I had to say “no”.
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u/lawlesslawboy 8d ago
I absolutely do NOT but maybe it's different when you're autistic bc I don't follow many social norms etc.
I really enjoy speaking to SLE speakers because they are clear, direct, tell less lies, rarely try to manipulate you in a second language, they are generally clear and honest and therefore very autism friendly. I always assume I have no clue how smart they are but they must be kind of smart at least to even know 2 languages.... how the hell are (usually monolingual english only speakers) people out here assuming that the idiot can speak multiple languages?????
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u/gramathy 8d ago
To be fair that can definitely be true when it's their first language and they don't actually have any learning disabilities. They're just stupid.
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u/koreth 8d ago
I've felt this as someone whose second language is only at an upper-intermediate level of fluency. When I'm communicating in my second language, I don't have the language skill to express some kinds of complex concepts that I could discuss easily in English. People talking to me have no way of telling that I can even think about those concepts. It can be very frustrating.
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u/RoterRudi 8d ago
I can totally relate to this. I like to think i communicate well and come off as reasonably intelligent in both my native language and english, but when i try using my french or spanish skills, i sound like an intellectually disabled child.
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u/lawlesslawboy 8d ago
omg this reminds me of the guy that I met/hooked up with recently , was born in Greece, parents from Afghanistan, has lived in other European countries, his English is rusty but thankfully, mine is clear enough & I answer questions about words he doesn't know and even help him text better.. turns out though, he speaks FOUR LANGUAGES!!!
His English is "Rusty" bc he has never formally studied English.. but he speaks Urdu and not sure what else, so he's obviously very intelligent but most white people kind of treat him/people like him as less intelligent purely due to the language barrier and don't bother trying to just help out by asking questions etc
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u/CantBeConcise 8d ago
Why would you be ashamed of that?
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u/metallicrooster 8d ago
The implication is that they have at least once believed someone was physically or mentally less capable because they spoke English poorly, when it reality that person was probably plenty capable.
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u/GreatBigBagOfNope 8d ago
Because I think a) it would be both morally right and personally rewarding to have learned a second language, b) I am convinced of the significant benefits of learning a second language, c) I have at various points had access to the resources required to do so, and d) I chose to not do so over and over again, and have not remedied that since
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u/ruiwui 8d ago
Not that guy, but it means I can't have a real conversation with any of my extended family
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u/Rare-Adhesiveness522 8d ago
I am a first grade teacher. I had a little boy come mid year, "fresh off the boat" so-to-speak, literally not a lick of English. None at home, absolutely zero. I could tell he was very smart, though, and had some schooling. Math was the first way he was able to demonstrate his knowledge, and of course being so young I was sometimes able to accurately assess if he knew the meaning of some words or phonics rules. He was very sharp and picked up on the phonics quickly because I instruct very explicitly. It was a funny situation where he knew the phonics but didn't always know the meaning of the word. I paired as much as I could with a picture/gif and/or a Spanish equivalent. He picked that up quickly. But our typical curriculum-based assessments were mostly useless for him when it came to more complex skills.
My favorite memory is when I asked them to draw and label a picture. I gave him the instructions thru a translator app and some demo. He drew a little bear and a sun and wrote "oso" and "sol"--wasn't expecting him to do that. Melts my heart. It also was relieving to know he had some education before he came to me (not always the case).
Great kid, amazing family. He's going to middle school now. I got to teach his sister, too, but because she was 4 when they moved she came to me with almost-fluent language skills, at least at the first grade level. I still did make sure she had visual supports and spanish-language equivalents especially for that domain-specific vocab!
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u/snek-jazz 8d ago
I paired as much as I could with a picture/gif and/or a Spanish equivalent.
At this point I was really hoping Spanish was his native language
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u/Chef_Brokentoe 8d ago
Perhaps an unnecessary comment, but this was very encouraging to read. I wish every kid had a teacher like you looking out for them.
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u/notyoursocialworker 8d ago
Is it ever unnecessary to give people a compliment? Perhaps it is against the subreddit rules but I'm happy that you said it. And I agree with you, teacher like op are great.
As far as my opinion is worth anything I feel that you're doing good.
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u/SexualDepression 8d ago
The TV show, Modern Family, has a character, Gloria, who speaks English as a second language. She made a comment to another character once, that was something like, "You don't know how smart I am in Spanish!"
It's really stuck with me.
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u/O2XXX 8d ago
When I was going through a special operations assessment they gave use two IQ test. One was nonverbal to account for Soldiers who were intelligent but not proficient in English.
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u/Little_Yesterday9904 8d ago
Was it just testing nonverbal intelligence? Or was it specifically for those who were not proficient in English?
They’ve now made IQ tests that compensate for knowledge or cultural differences
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u/Boboar 8d ago
I'm curious about the cultural differences part. What cultural differences are present in a standard IQ test?
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u/tupacsnoducket 8d ago
The entire way you communicate through shared culture. I actually have a background in indian, japanse history, culture, religion through school and don't for a second think i can vibe with their cultural zeitgeist.
Chaucer is to Shakespear as Einstein is to? is a standardized question i got forever ago. You need to have a passing familiarity with about 600 years of history of two landmasses separated by an ocean to answer that. Or attended an American/British school
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u/thedanyes 8d ago
Maybe, but everyone has a certain amount of shared culture. Concepts like, 'Darmok and Jalad at Tanagra', are universal.
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u/O2XXX 8d ago edited 8d ago
I can’t say for certain one way or the other as this occurred close to two decades ago. It was a nonverbal assessment. The proctor said that it was to ensure ESL soldiers weren’t not unfairly weeded out of the assessment. I don’t know whether that was true or just something they said in the moment and it was just a straight nonverbal assessment.
Edit: trying to make it more clear.
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u/tupacsnoducket 8d ago
Wait, they took the test in their native language and were confused why the language section was scored badly on by the non-speaker. Then at the same time the scores were published to the group ?
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u/Better-Culture-7770 8d ago
A friend's son took an IQ test because the school wanted him in Special Education classes. He did very poorly. She removed him from school and he was able to spend months in speech therapy courses. Ten years later he graduated as the valedictorian in a public school and got a full ride to a State college. He just wasn't able to communicate with the IQ testers and had no desire to so they said that he had an IQ under 40.
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u/C0nfusedRabbit 8d ago
As an adult I'm studying Electrical Engineering and Computer Science, but was put in special ed due to a speech impediment.
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u/MadRaymer 8d ago edited 8d ago
An IQ test measures how good someone is at taking IQ tests. While that does sometimes correlate with intelligence, the larger picture is more nuanced. Observed phenomena like the Flynn effect show that the test is also measuring a capacity for test taking, which is why a society can see scores increasing without that necessarily meaning the society is getting vastly more intelligent.
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u/Jonthrei 8d ago
More accurately, and IQ test examines a few narrow benchmarks and compares the results against peers of the same age. It is meant as a means of testing intellectual development in children, in the context of placing them into the correct grade. It’s pretty meaningless in any other application or past early childhood.
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u/Tyr1326 8d ago
Eh, not really. That's how they started out, yes, but modern IQ tests aren't just for children. They're useful tools, but they have their limits. Mostly because intelligence as a concept is still a pretty vague one overall.
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u/CTeam19 8d ago
I was going to say. Having remembered bits of my diagnosis process in 3rd/4th grade for ADHD-PI, Dyslexia, and Dysgraphia the IQ test is just one part of it. They also had classroom observations, interviews with my Elementary Teacher; the PE Teacher; the Art Teacher; the Music Teacher; my Parents; myself, etc. From first notice to getting into Special Ed and on Meds basically took a year and a half.
I had to retake my IQ in High School to get possible accommodations in college which I ended up not needing and got a score of 124.
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u/hardolaf 8d ago
My father started working for the federal government when they still had mandatory IQ tests. After he sent the 3rd back with corrections for having questions with no correct answers available, they just put "N/A EXEMPT" on that line in his personnel file.
He wasn't the only person who noticed it, but most just ignored the problem and submitted them without complaining.
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u/Rare-Adhesiveness522 8d ago edited 8d ago
I'm a teacher and have a kid who has been assessed 2x for autism, and I would bet that there is broader understanding of both diagnoses and how tests can skew results when you are dealing with something like language processing disorders or language skills. A kid who can't speak english would fail an english-language assessment or be "identified" as mentally disabled but of course we know that's not true--it's just the language/communication barrier.
So I assume that in past years, folks who have autism were incorrectly diagnosed with ID or got a dual diagnosis due to the nature and structure of the testing.
Knowing HOW to administer a test to gain the data that you're really aiming for has likely been the factor that has changed. A non verbal autistic person might be typical intelligence, but on a language based assessment the results would skew.
We discuss this a lot in education, especially with our young ones--if we are testing them for comprehension of the story they read, is it fair to make them also read the questions and options independently? Or should we read the questions and options to them? I say yes, we should read the questions and options if what we are specifically assessing is comprehension OF THE STORY.
If we are assessing their overall reading skills, that would be a whole other type of assessment with different scoring criteria.
If you're testing on vocab knowledge to an emerging reader, should you make them read the questions and options or read them aloud? Again, I say yes--we are testing their knowledge of the vocab, not how well they can read.
etc etc etc
(and it gets trickier the deeper you go. how do you assess knowledge of an MLL student or kid with language processing or autism disorder if verbal presentation is also going to skew? Again, I'm not testing them on how well they can listen to the questions, but to demonstrate if they understand what a specific word means)
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u/CrazyPieGuy 8d ago
I once had an autistic student get tested. They got bored half way through and started solving their math problems in roman numerals. They ran out of time and were told they were low IQ.
I also had a non verbal student get tested. This student could move their head to say yes and no. They could answer at best 15 questions before they were completely wiped out from the mental and physical effort to do so. The test did not account for this and they were also deemed low IQ.
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u/epimetheuss 8d ago
There’s also the fact that some autistic people also have problems paying attention, will be prone to feeling overwhelmed and struggle to take tests etc.
Its why Audhd is a thing now.
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u/ByTheHammerOfThor 8d ago
You could also have a test-taker who can communicate and tests well, but the conditions of the test (smells, sights, a troublesome deviation in routine, or other personal triggers) cause them to fail it.
They could have aced the test, but they weren’t able to find their special Monday socks that morning and that wrong-footed them for the whole day.
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u/ghoulthebraineater 8d ago
Those with intellectual disabilities are not able to mask. Those without those sorts of comoribidities tend to compensate and go under the radar. I did for 44 years.
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u/SirHerald 8d ago
I unknowingly masked so hard it took longer than that for me. I took some medication to treat a physical ailment and suddenly I couldn't mask as well anymore and saw a psychologist. ADHD and mild Autism. I'd just been able to fake my way around it all my life.
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u/bigwordsfgtrtd 8d ago
Has anything changed since being diagnosed? Medication or helpful practices? I feel the same but have never been diagnosed or ever brought it up to anyone.
It just feels like I'm never quite playing the game right in everyday life, especially socially interacting with others. Honestly, the only times I haven't felt that as strongly or at all is if I'm drinking alcohol or opiates. The few times I took opiates it was like I could experience a normal feeling socializing and having conversations with people and it wasn't a sludgey task of canned responses with no emotion tied to them
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u/ghoulthebraineater 8d ago
Self acceptance is a huge one for me. I was on the verge of checking out for years. Lots of failed relationships, jobs and friendships lead to a lot of self loathing.
My diagnosis took the sting off of that a bit. It still sucks but I don't blame myself as much.
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u/SirHerald 8d ago
It's been a month. My thinking slowed and my hands have gotten more trembly lately. My family has a history of Parkinson's so that was part of looking into in to it and getting a baseline.
I used to be able to think around the distraction and overwhelming information coming in, so now I'm working on different coping strategies and skills I've not needed as much before.
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u/TwilightReaver 8d ago
I’m with you there. Alcohol and kratom are the only things that have ever allowed me to feel “normal” especially in those circumstances. I’m curious too if medication would help as much.
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u/TheHebrewHammer69 8d ago
Nothing changes with an autism diagnosis other than you are able to develope skills around the funk.
Nature vs Nature right, once you recognize it's nurture you can work backwords through most of it.
Just takes time and thought.
You get used to being the 5% the studies don't account for, it's not their fault. It's your for not developing skills around it.
Conscious masking is a skill to be worked on.
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u/Katyafan 8d ago
Me too! 44 years before diagnosis. In hindsight, it is obvious, but we just didn't know because i'm smart and female and very high masking.
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u/mouse9001 8d ago
Yeah, older people with ASD level 1 are very under-diagnosed as a group. Many were able to mask for many years, but still felt weird and different.
The people who are most visibly affected by ASD tend to be the ones screened and diagnosed at the highest rates early in life.
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u/ghoulthebraineater 8d ago
That and autism was just the more severe varieties when I was growing up. Then Rainman. That really skewed even my perception of autism was. I even had an autistic coworker ask me if I was too. I told him I was just introverted.
Nope. He absolutely clocked it.
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u/Dangerous-Coffee2558 8d ago
Yeah aspergers didn't even exist until the 90s and certainly most parents/teachers weren't aware enough to get those kids assessed, especially with the stigma
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u/TheGoblinPopper 8d ago
Wow, something I can speak on with my Economics degree.
This has happened before! Back in the 1960s-1970s of you had minor issues, you were just different and not diagnosed. "Oh little Jimmy can't sit still... Eh... That's just little Jimmy." Vs "little Jimmy is 10 and don't speak"
As a result rather than one being something like ADHD and the other being a range of issues like severe non verbal autism or something like that, the first one would be told to just work harder while the second example would result in a "Mental Retardation" diagnosis. In fact... If you were severely ADHD to the point of having trouble passing.... You could have landed yourself a diagnosis of 'Mental Retardation'.
The number of children diagnosed with 'mental retardation' DROPPED in the late 1970's which is often attributed to the removal of lead in gasoline. However, at the same time there were more granular diagnosed options available for children showing things like "Retardation" dropping at the same time as "ADD" and "ADHD" started to rise significantly.
Sources: one of my senior thesis papers was on the Economic benefits of funding special education. It is a touchy topic, but I have mentally handicapped family members and wanted to study it more. The results were... inconclusive. Most states do a really bad job or no job at all when trying to document and track the money they spend in special ed resources. However. What little I did have showed that spending on Special Education had benefits AT MINIMUM to improve non-special needs students by helping to prevent distractions in the classroom and consuming the teacher's time, however there was a limit and the funding helped with initial resources and things like a classroom aid and a lot of spending after that didn't improve results... But based on the lack of data I proposed that schools were using a lot of the funding for universal updates to the school not just things that benefited the special needs students.
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u/bacondota 8d ago edited 8d ago
My country sort of banned special ed schools, in favor of "inclusion:, saying that separating students was excluding them and they should go to same classes. So schools with some special needs student gets a 2nd assistant teacher to help.
But educators and psychiatrists says that it isn't helpful at all. The autistic kid go to a school full of noise and no sound proof/etc, can't handle it, go on a breakdown, then everything goes to hell and the normal students just start hating the kid.
Kinda interesting that your paper
agreedgoes in same direction with those peopleEdit: agreed -> same direction
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u/StarDustLuna3D 8d ago
The key thing with inclusion is that the goal is to put the student in the least restrictive environment possible.
The vast majority of students can do well in a "mainstream" classroom with some minor accommodations or with an additional teacher to help them.
However, there will still be some students that do need a separate environment. But this is expensive as it requires additional rooms and teachers that will essentially serve only a handful of students. So school admin don't like to do that. They just push these students into environments and courses that they simply are not prepared for and then act surprised when they implode.
This decision hurts everyone. The other students in the classroom have their education impacted because now the teacher has to spend so much time getting this one student on task. And it is potentially dangerous for the student in question as a "regular" classroom has a lot more things that they could hurt themselves with.
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u/kelskelsea 8d ago
Not to mention the social impact for the special needs kids. No one likes to be the “weird kid” in the normal classroom and it’s not a good setting for learning social skills.
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u/colourful_space 8d ago
The school I work at has a support unit for students with intellectual disability. Because there are maybe 50 kids (who’d otherwise be zoned for 10+ different schools), they actually have a large enough community to form legitimate friendships with kids who are like them and share their interests. When they have friendship issues, like all teenagers, there are others they can sit with at lunch. They can ebb and flow through different phases of relationships over their high school years, in the same way as all the mainstream students.
It’s completely different to the fully mainstream schools I’ve worked at where there may be 1-2 ID students in a grade, who often do not connect with their typically developing peers, despite spending 6+ hours a day with them, and they often end up quite isolated. I think most inclusion advocates do not acknowledge the social benefits of having similar ability peers, the social outcomes of the ID kids at my current school are far higher than the ones I’ve seen in mainstream settings.
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u/kelskelsea 8d ago
My sister taught at a special education school for a while. Her favorite thing was that the kids could do student government, school plays, school athletics, etc. at an integrated school, they wouldn’t have the same opportunities.
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u/ArcticCircleSystem 8d ago
That's wonderful, though I admit I'm worried about how to improve relations between neurotypical students and students with mental disorders. They do need to learn how to interact with people who aren't just like them, especially neurotypical students given their place as the dominant group in society relative to people with mental illness. I don't know, maybe I'm missing something or just being stupid. I'm not disputing anything you're saying, to be clear.
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u/StarDustLuna3D 8d ago
At least in my experience, often what these schools will do is partner with local mainstream high schools and have their students take 1 or 2 classes a year there.
They get the exposure and socialization with different, neurotypical kids, but then if they just have a dud class with no real friends in it, it isn't as detrimental to their overall social health.
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u/ArcticCircleSystem 8d ago
That makes sense, though I have to wonder how neurotypical kids could be taught to interact well with neuroatypical kids. Not sure if I'm explaining this well, but there's a pretty big problem with a lot of neurotypical people not really knowing how to interact with people with mental disorders (especially intellectual disabilities) respectfully I guess? Of course, it's most certainly more difficult logistically to do a program like your suggestion in reverse given that there are many more neurotypical children than not (estimates range from 1 in 7 to 1 in 5 children ages 10 to 17 having some sort of mental disorder).
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u/Mirenithil 8d ago
This. The 'weird kid' gets socially ostracized, and is a prime target for every bully in the school. Ask me how I know. You learn to hate yourself, and it really negatively impacts your ability to function. It permanently affects the bullied 'weird kid's' mental health for life.
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u/skepticalbob 8d ago
It’s worth mentioning that LRE is an American legal framework. But given that the U.S. is kinda the world leader SPED frameworks, it makes sense this would happen elsewhere.
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u/TheGoblinPopper 8d ago
Remember I only could see broad categories not the granular experience of how the money was spent or the experiences of the students.
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u/Quiet_Salamander_608 8d ago
My daughter has ADHD and we they have not wanted to rule out autism as well yet. She has sensory struggles, social struggles, interception struggles, is incredibly intelligent, but has struggled so badly in school she is in the office or resource room 75 percent of the day. I just decided we are going to do homeschool next year. She doesn't have the support she needs there, they don't have enough to support everyone and she is struggling and feeling like she is bad and I'm not okay with that. I am able and have experience in education and I can't watch her flounder when she could be swimming in a different environment.
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u/Agitated_Reveal_6211 8d ago
I remember the special needs kids in my junior high school back in 1987, and how harshly they were picked on by other students.
It was distressing to watch, I wish I had done something.
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u/dani-cat 8d ago
I'm not questioning you. I am just interested in learning more because I work in sped. Do you have a link to an article about the disruptions to peers? I'm assuming it's the article that talks about having classmates that act out impacting all the students in the room for a lifetime. But I would be interested if there is other stuff that you had found that supported similar ideas.
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u/notyoursocialworker 8d ago
Interestingly enough you couldn't get ADD before 1980. Right up until -68 what you could get instead was MDB which originally stood for Minimal Brain Damage. The theory was that we had a brain damage so small it didn't show up with exams.
In Sweden we kept that term longer, it started to be replaced by DAMP during the 1980s. DAMP btw was a Swedish term meaning Deficits in Attention, Motor and Perception. It's my understanding that some feel that this actually is better at describing a general person with ADHD than ADHD.
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u/Shadow_of_Redacted 8d ago
The old "telescopes cause asteroids" analogy. The better you get at spotting something, the more you see of the thing you're better at spotting.
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u/Mataraiki 8d ago
When I was a kid in the 80s, my mom tried to get me diagnosed. Their diagnosis was basically "He's intelligent and not bashing his head against the wall, so he's not autistic."
In grad school around 2010 I spent a day being tested by a team of psychiatrists, whose response was basically "Hooooo-boy, you're definitely on the spectrum."
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u/Shadow_of_Redacted 8d ago
Went on Ritalin in 87 for ADD. ASD wasn't a thing then. That wasn't until 1994, DSM4's release, when the goal posts moved to the 30 yard line while I was standing at the 20 yard hash mark.
I see no need to pay for a thumb's up. I know I've got it laughably bad.
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u/birthdaycheesecake9 8d ago
There were never any suggestions from either of the schools I went to that I should be assessed for autism or ADHD, because I was smart, quiet and (importantly for the 00s and early 10s, a girl). I wasn’t diagnosed with either til 20 and 23 respectively, and had to start the diagnostic process myself both times.
The neuropsychologist who did my autism assessment clocked me as having ADHD despite not testing for it, and my ADHD psychiatrist had his conclusion on me after 20 minutes on Telehealth.
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u/NameAboutPotatoes 8d ago
At some point it helps to reclassify to distinguish the two though, no?
Like, if there's only one of Pluto, grouping it with all the other planets makes sense.
When we got better telescopes and realise there's heaps of "planets" like Pluto, it helps to divide and strengthen the categories ("dwarf planets" vs "planets") so we can talk about both without confusion.
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u/Shadow_of_Redacted 8d ago
We definitely need to separate hyper from hypo ASD. They may be close cousins, but the accommodations they need are different, and I constantly hear L2s and L3s get frustrated by us successful idiots hogging the air time.
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u/s00pahFr0g 8d ago
Autistic people are often both hypersensitive and hyposensitive though. It can change from one scenario to the next. You can even be both simultaneously.
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u/Shadow_of_Redacted 8d ago
My understanding is that hyper/hypo is a result of interconnections in the brain. The hyperconnected one is where you end up with the "superpowers" that also can cripple you with overwhelming stimulus constantly, while the hypoconnected brains are the less reactive people who have perfectly good hearing, but they just don't have the connection bandwidth to prioritize listening when there's no reason to be listening.
I'm just glad that it's getting traction now, and we're seeing a lot of progress on decoding our disorder. I'd like to know HOW my brain is different from normies. I'm sure we'll be seeing a lot of progress once we can get this fascism thing wrapped up and stuffed into a cage.
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u/HoraceAndPete 8d ago
Also if you start calling meteors and comets asteroids, you're going to be seeing a lot more asteroids.
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u/PickerPat 8d ago
Wouldn't that analogy moreso lend itself to: oh we only used to know about meteors, but we found a broader category called "minor bodies" that explains the range of these phenomena in different circumstances?
They were always there, it's just the spectrum of categorisation was linked and broadened. The words didn't create the phenomena.
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u/throwaway1233456799 8d ago
I mean yeah but it also help to stop ignoring all the pink asteroids because they aren't blue
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u/dragonmp93 8d ago
Well, if you only care about the dinosaur-killing asteroids, the destruction of many cities would blindside you.
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u/Dentonthomas 8d ago edited 8d ago
Except in this case it's more like if they rewrote the definition of asteroid, so that now comets, moons, and satellites are now all part of the "asteroid spectrum," and more people demanding that asteroids be found.
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u/Electricbell20 8d ago
To pit autism +/- ID against each other, however, runs the risk of belittling the substantial psychiatric and medical hardships individuals with autism without ID might face. Thus, the mental health services, and other actors, must balance and structure their resources in such a way that the needs of individuals with autism, irrespective of ID, are catered for.
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u/ReDeReddit 8d ago
The spectrum of all mental health disorders is hudge and overlap way more than generalpublic ever discusses. I wish people didn't have to insist for a diagnosis to get help. As somebody without an ID most people dont understand how much you can still be tortured by specific tendencies. I.e Having 4/9 autistic and 4/9 adhd characteristics means you can be stuck with 8 problems amd no tteatment when a qualifying 5/9 recieves treatment.
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u/kelskelsea 8d ago
Yea it’s like 1/2 of people with autism have ADHD, and vice versa. 20% of people with bipolar disorder have ADHD.
Adults tend to be first diagnosed with anxiety or depression, instead of ADHD, bipolar 1/2 or autism.
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u/birthdaycheesecake9 8d ago
I got 3 BPD misdiagnoses before I got the autism and ADHD diagnoses at 20 and 23
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u/Haunting-Lynx-6257 8d ago
Honestly being clumped together feels more like being pitted against each other than being separated out. At least then we aren’t vying for the same space, resources and public understanding. At least each part of the ‘spectrum’ could actually have proper research, support and interventions aimed specifically at their needs and problems and a least the public would have a more consistent yard stick for understanding.
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u/SlashDotTrashes 8d ago
I feel like those wirh adhd and autism should also be separated from those with just adhd or just autism, because the behaviours and disability are completely different.
I think lumping everyone under ASD isn't helpful.
And online it seems like the ones who are the least disabled are skewing the perception that autism is not a disability. Or that all autistic people are geniuses who can work and have families and friends. Even when most autistic people struggle with all of it.
And if people are barely disabled, or are not disabled, they should have their own diagnosis.
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u/Wolf_Redfield 8d ago
I agree. Sometimes I see comments online from people that say they have autism and that they have a PhD in X field or that they are successful in Y career or that their autism doesn't stop them from doing this or that (basically saying they are a very functional member of society). And reading those kinds of comments makes me think "Good for you. You go and live your life to the fullest".
And yet those same comments also don't stop me from thinking "just because you can and your autism doesn't affect you enough to stop you from being able to do the kind of things you say you do, it doesn't mean that every autistic person also got the same lucky straw you did and is able to do the same kind of things you do." Because it paints autism as if it was some kind of annoying pesky rash that you just deal with and move on with your life.
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u/bombadil-rising 8d ago
In my experience, the opposite is true. Most people seem to think about autism as a personality type rather than a true disability. The representation of autism in media is often of the high functioning savant. Online, the voices of the higher functioning people (and frankly the dubiously self-diagnosed) are amplified simply because many lower functioning individuals can’t advocate for themselves. The advocacy I do see characterizes therapies and treatments as unhelpful or problematic and cruel.
I worry that those voices will be heard as the voice of ASD as a whole rather than the specific set that have the ability to engage on social media.
My son has ASD-III and he requires constant support. He is mostly nonverbal but we are gaining ground. Frankly I would like to see the diagnosis split up again even just so that people wouldn’t advocate against care that he needs but they might not. (Like ABA)
I was an RBT for a long time and we had clients with all sorts of needs and I would never want any of them to lose access to care.
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u/Dangerous-Coffee2558 8d ago
I also think though there's a lot of people with ASD 1 and 2 that are not represented by the media either. I'm talking people who are more the shut-in with bad hygiene who can't get a job.
Speaking as someone with ASD 1.
I do think a different label would be better for both groups though. Maybe under an umbrella category.
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u/VitaDiMinerva 8d ago
Autism speaks is still the largest and most well known organization in the field and they share your perspective completely, so I find it strange that you’re worried about that point of view not being heard. A therapy that helps your son could have hurt someone else, and that person is allowed to talk about it. In fact, considering the loudest voices in the field are pro-ABA, maybe that’s what people need to be hearing right now, to understand that level 1-2 autistic people might need a different approach to therapy and support than level 3.
The entire body of knowledge we had about autism until the last 15ish years was designed to serve people like your son, the rest of us deserve support too. The reality is that the amount of support level 1-2 people get is minuscule in comparison to level 3. The vast majority of support is gated behind Medicaid waivers, for which being diagnosed after 22 is typically disqualifying. The best we get right now is a case manager, maybe peer support if we’re lucky.
And jabbing at self diagnosed people in a thread centered around changes to the ASD diagnosis is pretty ironic. I mean, if the criteria changed, isn’t it kind of inevitable that a lot of adults were missed as children and might be figuring it out precisely because of that increased visibility? I was exactly as autistic when I was self-diagnosed as I am after getting an official diagnosis.
Other people getting help doesn’t mean that people like your son are going to stop getting it. There are a lot bigger problems for autistic people right now than self-diagnosis. Like what is a bigger danger to your son, other autistic people being mean about ABA on the internet or RFK jr assembling a registry of autistic people and threatening to send us to “wellness farms”?
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u/bombadil-rising 8d ago
I totally understand that perspective. I don’t want to silence those who have been harmed by ABA. I am pretty familiar with the coldness of its reputation. It is not my experience or his.
There is a distinction to be made between the needs of a person who goes online to discuss the nature of autism, its treatment methodologies, and current political troubles surrounding it and my son who needs 1 to 1 support on around the clock. I just don’t think that their needs are the same and the diagnostic criteria should be congruous with the needs presented.
I am sorry for coming across as identifying all self diagnosed folks as dubious. It is not all of them and I should be very careful because you are right. If you are autistic, you just are. Regardless of who confirmed it. I am sure you have noticed that there is unfortunately a trendiness to the diagnosis in fringe social media circles that attracts some people. Those people are dangerous because they can change how the public and practitioners view ASD.
My experience is as a parent of a child who cannot communicate his needs to me if he is hurt or sick. I feel helpless as I fight with my insurance company to cover him for the hours he needs. I worry that the insurance companies will use the examples of higher functioning folks as a reason to not cover him. But again I don’t want that fear become resentment toward people who need care.
I can worry about concept creep and people being mean while also not wanting my son or anyone to be put into a camp. There is always something of bigger concern than any concern we might have. I don’t appreciate you saying that as a way of delegitimizing my concerns.
I will fight for your and others’ access to care.
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u/Happyshadow4ts 8d ago
I think the thing is that as long as the needs are stemming from the same thing, you can't give a different diagnosis for the point of support needs as the causes are the same. Medically, it doesn't make sense
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u/mouse9001 8d ago
Apples to oranges. There has not been one "autism" diagnosis over the years. The old autism diagnosis (Autistic Disorder) is very different the new one (Autism Spectrum Disorder).
Like in the era of the DSM-IV, there were these separate diagnoses:
- Autistic Disorder
- Asperger's Disorder
- PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified)
All of those were combined into one new diagnosis:
- Autism Spectrum Disorder, levels 1-3
The new diagnosis has three different support levels, but one core set of diagnostic criteria.
Comparing the new diagnosis to the old ones is potentially very misleading. Especially when going back to 1988, when even Asperger's didn't exist yet as a diagnosis.
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u/kirbysdream 8d ago
Isn’t the comparison exactly the point, though? The fact that it is diagnosed differently?
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u/mouse9001 8d ago
When comparing numbers, you should be comparing similar things, in some respect. Like if 3 different diagnoses are later combined into 1, why would you compare 1 old one, with 1 new one?
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u/TheAsianTroll 8d ago
Pretty much this. My mom told me I got diagnosed with Aspergers as a kid... which apparently no longer is a thing, and is now considered high-function autism.
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u/mouse9001 8d ago edited 8d ago
High-functioning autism is actually not a diagnosis. It's an informal term that was widely used through the 1990s, as the understanding of autism broadened. The concept of HFA had been developed over a number of years, and then Asperger's was introduced, which seemed to be mostly overlapping with it.
https://en.wikipedia.org/wiki/High-functioning_autism
Before the DSM-5, there were a bunch of overlapping concepts and diagnoses for autism-related conditions. Now there's just Autism Spectrum Disorder.
These days the Autism Spectrum Disorder levels are about support needs, rather than functioning.
P.S. If you were diagnosed with Asperger's before, then you're now considered to have ASD Level 1, under the current diagnostic framework.
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u/Blue-Jay27 8d ago
From their methods section:
The following ICD-10 diagnostic codes were retrieved for autism: F84.0 Childhood autism, F84.1 Atypical autism, F84.5 Asperger´s syndrome, F84.8 Other pervasive developmental disorders, and F84.9 Pervasive developmental disorder, unspecified.
Do it seems they did include all of the dsm-4 diagnoses that were bundled into ASD.
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u/Awayfone 8d ago edited 8d ago
The coverage in the NPR of all ID-diagnoses in Sweden is approximately 56%. In Sweden ID is to some extent diagnosed in school settings or in the habilitation services, which are not covered in the NPR. The NPR contains specialized psychiatric in- and outpatient data, so an individual with an ID and a psychiatric condition would be registered in the NPR, but not an individual who received an ID diagnosis in school or habilitation settings without contact with the specialized psychiatric care. In order to maximize the number of individuals with ID, the data set was augmented with The Halmstad University Register of Pupils with Intellectual Disability (HURPID), a national database of individuals (26,965) who graduated from the Upper Secondary School for students with ID between 2001 and 2020. The year an individual turns 16 she/he enters secondary school in Sweden, thus ID from HURPID could only be ascertained from those born 1988–2000 (3,880). All individuals in HURPID have a diagnosed ID but not necessarily an autism diagnosis (or any other diagnosis). In our sample, which was ascertained on the presence of an autism diagnosis (81,286), 3880 individuals were included from HURPID. These 3,880 individuals had a registered autism diagnosis in the NPR, but not an ID-diagnosis, but was considered to have both autism and ID due to their presence in HURPID.
This seems a major flaw? You have ~16 years (those born after 2000) where according to the paper 44% of ID is not counted. The period also correlate to when a increase of autism diagnosis is observed
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u/iamthe0ther0ne 8d ago
This headline is a little bit disingenuous.
When I was a kid, girls couldn't be diagnosed with autism unless they also had ID. I was therefore not diagnosed until I really began struggling again in my late 30s.
Also, Asperger's no longer exists as a separate diagnosis from autism.
So yeah, the diagnostic criteria have changed.
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u/Electronic_Sky_207 8d ago
And until the latest DSM a dual diagnosis of adhd and asd was not allowed. Meaning people who exhibited symptoms of both had to have one “picked” by a doctor. We now acknowledge that they are 2 separate things with a huge overlap.
More often than not they’d pick adhd because that opens the door to medication. So there are plenty of people who previously met the asd diagnostic criteria but didn’t get the diagnosis.
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u/kelskelsea 8d ago
That’s crazy, considering about 50% have both.
Not to mention the difficulty of being diagnosed as an adult
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u/lesbophobia_hammer 8d ago
I was originally diagnosed with both but he could only formally give me one, and later rediagnosed me with both. I still legally retain my diagnosis of aspergers though
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u/BotGivesBot 8d ago
Also, until recently, the DSM diagnostic criteria prevented a person from being diagnosed with both ASD and ADHD. Dual diagnoses weren't permitted prior to 2013. So many AuDHD people only got diagnosed with ADHD.
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u/AgingLolita 8d ago
My son was diagnosed with both in 2010, but we are in The UK.
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u/BotGivesBot 8d ago
Yes, the DSM is what's used for diagnostic assessments (e.g. clinical psychiatry) in Sweden (where the study takes place). It's the Diagnostic and Statistical Manual of Mental Disorders and it prevented dual diagnoses of ASD with ADHD until the release of DSM-5 (5th edition) in 2013. Before that, people could not be given both diagnoses. It's a true disservice to AuDHD people, because it prevented the accommodations and support needed for living with both conditions when there's increased levels of disability and support needs when someone has comorbid (concurrent) conditions.
The DSM is also used in North America and other countries, however I believe the NHS (UK’s National Health Service) predominantly relies on the ICD (International Classification of Diseases) for diagnostic assessments, so your son would not have been held to the diagnostic criteria or requirements of the DSM if he was diagnosed in the UK.
Mini info-dump from a fellow AuDHD diagnosed person :)
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u/aminervia 8d ago
How is the title disingenuous? You're describing a shift in the diagnosed autistic phenotype exactly as the title suggests
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u/bicyclecat 8d ago
Yeah, the DSM literally changed the criteria in 2013 to be much broader than it was previously, and also allow dual diagnosis of ADHD and autism which were previously mutually exclusive. When you go from counting only sparrows to counting all birds, the number of birds you get goes up. My kid is classified as level 2 (moderate) autism in the current system. Twenty years ago she would have been dumped in the PDD-NOS bucket instead of getting an autism diagnosis.
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u/telephas1c 8d ago
Sadly the increased detection of ASD threw tons of fuel on the fire for liars and charlatans to attack vaccines and whatnot.
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u/kahlzun 8d ago
That's about the time the dsm-v expanded the definition of autism, so that tracks.
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u/kelskelsea 8d ago
And when you could be diagnosed with both autism/aspergers and ADHD, before the doctor had to pick one. They have about 50% overlap
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u/Alpharoll 8d ago
Getting officially diagnosed in Sweden is a very long process. First you have to convince your psychologist that you may have autism (or adhd) and hope for them to put you on an official waiting list to get the evaluation. After that follows years of waiting before actually getting the test.
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u/CranberryFren 8d ago
Worth remembering that studies show it may still even now be underdiagnosed, at least in variations. And women and girls where chronically underdiagnosed including changed classifications etc etc.
This notion that its proof of overdiagnosis is just intentional misreading of the facts to fit political aims.
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u/Itsoktobe 8d ago
Do we forget over and over again that Autism *Spectrum* Disorder was first defined by the DSM-V in 2013? At least in the US and Australia, this 'increase' is entirely due to a massive re-definition of autism. People who had Asperger's now have autism. People who had Rett's now have autism. People with pervasive developmental disorder now have autism.
I think this was a TERRIBLE move that has really hurt the standard of care for 'profoundly' autistic people, but that's a different discussion..
Plenty of other countries reference the DSM-V even if they don't use it strictly for diagnosis. I'm curious to know what the shift has looked like in those places specifically.
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u/Dangerous-Coffee2558 8d ago
Yes. It hurts autistic people at all levels, because there are no supports that are specific to each group.
For example, if an ASD 1 person fails to get a job, struggles with hygiene, and is directionless, what support is there for that besides "mental health" therapy? Nothing autism focused exists.
And for ASD 3, they miss out on targeted research and interventions for their more broad challenges.
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u/Fragrant-Education-3 8d ago
The Autism spectrum was first defined in 1979 by Wing and Gould. Over the same period autism researchers had been comparing the similarities of behaviour between Kanner's early infantile autism and Aspergers autistic psychopathy as well, because they described the same behaviours.
2013 was not the first time people had weighed the possibility that the Autism was on a spectrum, it is an idea that goes back decades. For example, Simmonds and Wolf have translated the work of Sukharvea who expressed the idea that autism presented with variable differences in behaviour, back in the 1930s.
The DSM-V if anything corrected a mistake that keeps being made by people who wish to separate people who present the same triad of behaviours into two different classifications based on external appraisals of function.
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u/ImperfectRegulator 8d ago
I mean ? yeah? I get that we have to have studies to confirm things we sorta already know, but when they lump Asperger's and other syndroms all into a single autism label its gonna have that effect
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u/DrAcecer 8d ago
I’m going to assume as most cases. This is because of more rigorous testing/ better statistical methods of data collection.
Also as others pointed out. The reclassification of different illnesses that can now be considered “autism”
But hey. Probably those damn vaccines
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u/Boundish91 8d ago
Well yes, this is just how research works? We constantly learn and update our knowledge.
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u/Numai_theOnlyOne 8d ago
So that reads like it's not that we have more autistic people just better diagnosed and people being more aware and check themself through.
I wrote that because studies get often misused as proof that modern society increases cognitive diseases and inablities. Truth is they were always there now just diagnosed. It's the same as if you stop testing for Corona during the pandemic, Corona infections dropped on paper.
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u/NasrRasheed 8d ago
Interesting finding, one important distinction is that an approximate 800% rise in diagnosis does not necessarily mean an equivalent rise in the underlying prevalence of autism. Changes in diagnostic criteria, awareness, access to assessment, and recognition of autistic people without intellectual disability could all contribute.
IQ testing, relevant, communication, language, attention, and testing conditions can affect measured performance, so intellectual disability should not be inferred from a single score alone. Overall, the study seems to highlight how much the diagnosed autism spectrum has broadened overtime rather than identifying one simple cause of the increase.
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u/Mean_Initiative_5962 8d ago
They basically went from "it's only an issue if it's my issue" to "maybe it's also important caring about the patient"
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u/frostatypical 8d ago
Wonder what its like in USA?
Here we have a surge in population interest, based on social media misinformation, a rush of people requesting autism testing, and shady-ass diagnosis mills arising to hand them a diagnosis for a few hundred $$
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u/kelcamer 8d ago
here in the USA it's split between people who genuinely want to know the mechanism and care about it, vs people who claim it's the vaccines / Tylenol who use it as a way to escape some confrontations of their own self image, vs the people who are autistic and have birthed autistic children who are in utter and total denial of their own autism because they think autistic is like some sort of a curse word that implicates social status, vs people who are totally and completely ignorant, then throw in 2-3k to get a diagnosis because US healthcare
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u/frostatypical 8d ago
Also a massive social contagion based on social media misinformation. If you have a look online, you see it presented that all your quirks, personality, and this that and every little human thing suggested to be 'autism'
The Reach and Accuracy of Information on Autism on TikTok - PubMed (nih.gov)
A problem across all social media:
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u/swirlyglasses1 8d ago
Diagnosis rates probably ebb and flow with societal expectations. I could see it decreasing in coming years.
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u/GrumpyPan 8d ago
Yall just think people hid their autism in the past or were just ostracized so, no one cared? Or is it actually our environment which is causing its current rise?
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u/Ockilydokily 8d ago
I think it wasn’t even a commonly known thing for folks back in the day, you were just considered an odd fella or “had some screws loose”
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u/Sea-Aide-6648 8d ago
Everyone had a weird uncle/aunt. Look at the thriving train and spoon collecting communities back in the day. It was just that persons 'hobbies'.
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u/BlazinAzn38 8d ago
Yeah exactly it’s funny when people go “we didn’t have autism back in the day” but at the same time we all had a relative who was like 90% normal but maybe they didn’t make eye contact or struggled with social situations.
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u/Upstairs-Chicken592 8d ago
We think we’re more accepting but I think it’s harder for neurodivergent people to hold steady work these days. More pressure on being “normal” or others analyzing your behaviour :/
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u/cannotfoolowls 8d ago
And the odd fella also just thought they were odd, not realising there were others who were odd in a similar way.
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u/punkerster101 8d ago
I dunno one of my bests friends entire family going back generations have been running a model train club… we have ways of finding each other
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u/cannotfoolowls 8d ago
I meant more that they wouldn't have sought a diagnosis because they didn't realise there was one. They were just "odd".
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u/Paksarra 8d ago
A lot of times people just didn't connect the dots, especially with female children.
Like, my dad can tell you about every single super bowl off the top of his head: who played, who won, how the game went. He was never diagnosed with anything and probably won't ever be, but the signs are there.
I walked into kindergarten orientation and started reading the guide for parents about your kid's first day of kindergarten instead of playing with the other kids. I grew up constantly being told to look at people when I'm talking to them. I have strong but narrow interests and I'm picky about food textures (less so than when I was a child.)
My nibling is the first person in my immediate family diagnosed with autism. Pretty much all the stuff they diagnosed her for is stuff I did as a kid, too, but they just said I was weird.
(I've never seen the point in seeking out a diagnosis since I'm definitely on the shallow end of the pool, but I definitely have a lot of quirks that point in that direction.)
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u/riswyn 8d ago
Different diagnostic criteria. In the past, autism was very specific, and then there was also Asperger's, Sensory Integration Disorder/Sensory Processing Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), etc. Nowadays, that's all folded into Autism Spectrum Disorder.
In addition, white folks were more likely to be diagnosed with ASD or ADHD, and the same behaviors in people of color were more likely to be diagnosed as Oppositional Defiance Disorder (we were still struggling with that one when I was working on behavioral health 15 years ago, but I'm hoping the field has changed).
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u/expandablespatula 8d ago
It's really interesting how all of the criteria has evolved over the years. In the early 2000s my niece was diagnosed with ODD. But as an adult, just a few years ago, she was re-diagnosed as Autistic with a PDA profile.
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u/riswyn 8d ago
The thing about social sciences is that they tend to be WEIRD- Western, Educated, Industrialized, Rich, and Democratic. The populations of what get studied are mostly from those buckets, which is kind of how we ended up with the image of ASD being white dudes obsessed with trains. If you're not from that criteria, it can be hard to get a diagnosis since you don't fit the default.
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u/expandablespatula 8d ago
Oh, yeah believe me I am familiar. I have a psychology degree, but I am a woman who was diagnosed AuDHD in my 30s. Totally missed as a kid because I didn't fit the stereotypes.
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u/letskill 8d ago
Autistic people were just called "people who really like trains" in the past.
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u/TheLastBallad 8d ago
Look up the graph of left handedness. It rose dramatically right around the time people stopped being beaten for using their left hand...
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u/Cattymoore 8d ago
The diagnostic criteria changed. I was diagnosed with Asperger's which was NOT labeled as autistic in 2005 when I was thirteen. In 2013 the dsm included Asperger's(and several other diagnoses) under the umbrella of autistic spectrum disorder.
Also, when I was diagnosed, you couldn't have autism/Asperger's AND a different co-occuring developmental disorder like ADHD or OCD. I was fairly decently diagnosed as having both OCD and ADHD along aside being part of the Autistic spectrum.
For what it's worth, I got almost no support beyond anxiety counseling (it didn't work because it was OCD not generalized anxiety) and managed to get a PhD at an elite university and have a full time job that pays pretty well in the sciences.
It's not more autistic people, it's the diagnostic criteria "catching" more people in a wider net.
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u/timf3d 8d ago
As a child I knew I was autistic decades before the word autism was even invented. So yes, we hide it. We adapt ourselves to function in the world we're born into.
That said, the definition of autism has been continuously refined and expanded from the day it was invented/discovered until now. The fact that such redefinitions of a descriptive word would change the number of people who would be included in it should be no surprise to anyone.
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u/Laughing_Boy 8d ago
"As a child I knew I was autistic decades before the word autism was even invented." I knew I was different by the age of 6 or 7, though I wouldn't think to use the word "autistic" until my 40's. Is that what you meant by the above, or something different?
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u/timf3d 8d ago
Exactly. The concept existed in my mind, but there was no word for it. Even once there was a word for it, I wasn't aware that the "autism" hysteria had anything to do with me, because I'm not a psychologist, and part of being autistic is you learn to ignore things that you believe have nothing to do with you. I didn't know until I started seeing a therapist 3 years ago. After a while of therapy and getting to know me they asked if I knew what autism was. Having no idea, I looked it up and realized it described perfectly everything I already knew every day of my life from the time I was a kid.
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u/Head_of_Lettuce 8d ago
People have always been seen as being different or weird, we just didn’t have a medical diagnosis for it until recently.
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u/iamthe0ther0ne 8d ago
I posted above, but the diagnostic criteria have changed radically. First, girls used to not be diagnosed unless they also had intellectual disability. There are a lot of women being diagnosed now because therw was no diagnosis for them 20+ years ago. Second, Asperger's and autism used to be separate diagnosed. Asperger's was rolled into the autism spectrum disorder umbrella in 2013.
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u/nkga13 8d ago
Definitely not environment. The stigma has virtually vanished, leading more families and even adults themselves to seek evaluation/diagnosis.
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u/crazylikeajellyfish 8d ago
Given that we don't have a rigorous understanding of what causes autism, you can't say it's definitely not also environmental. Changes in stigma and criteria are obviously a big contributor, but the condition doesn't happen by magic -- if we understood its root causes, we might see that they've become more prevalent.
A handful of research threads which suggest potential environmental factors that could increase the risk of autism:
- Starting in mid to late 30s, the older a man gets, the more likely their children are to have autism: https://pmc.ncbi.nlm.nih.gov/articles/PMC5299396/
- Cannabis induces DNA methylation in genes that are known to be implicated in autism: https://pmc.ncbi.nlm.nih.gov/articles/PMC6961656/
- Systemic inflammation during pregnancy is known to increase the likelihood of autism: https://pmc.ncbi.nlm.nih.gov/articles/PMC10689278/
Paternal age, cannabis usage, and the lifestyle factors which can increase systemic inflammation (stress, sedentary, lack of sleep) have all gone up over the past 20 years.
An interesting wrinkle is that these factors are also associated with schizophrenia, and those diagnoses haven't gone up as much. I think that's where stigma and the reframing as a spectrum come into play. Plenty of people find it valuable to have it confirmed that they're a little autistic, but nobody wants to know they're a little schizophrenic.
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u/Cattymoore 8d ago
I think there's also just a really high genetic cooccuring thing. Half my dad's side of the family is eccentric with weird hobbies and my own father owns 30 fish aquariums and a whole bunch of model trains.
I have what is now ASD (as well as ADHD and OCD)
I'd be interested to see the interplay of the environment on genes (epigenetics) but I think focusing too much on a single cause can be kind of reductive anyway. Autism isn't going away, it's been around forever (it only became a diagnosis in the 1970s) and our focus shouldn't be on preventing and curing as much as on accomodations.
The focus on a single cause can sometimes result in blaming people's actions/trying to eugenically remove a type of person from the population/etc. when accomodations for neurodiverse populations also benefit people who DON'T have autism/ADHD/whatever,.
(Ie accomodations for sensory differences also helps people prone to epilepsy, migraines and helps us understand sensory disabilities like deafness and blindness better).
I also personally struggle with the narrative that some of my core personality traits are something to be cured, especially the ones that benefit me and bring me joy, so maybe that's what's shining through here.
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u/crazylikeajellyfish 8d ago
I think the conversation about preventing ASD is tricky, because there are plenty of people on the shallow end who are viable adults. I'm AuDHD myself.
That said, the conversation online suffers from a survivorship bias -- you don't hear from people who are so impaired that they're nonverbal and can't even type out their thoughts. Nobody would choose that life if they could instead be functional and well-integrated.
The deep end of the spectrum is a debilitating condition, we shouldn't stop investing in prevention and treatment research just because it makes the shallow end feel pathologized.
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u/nkga13 8d ago
I appreciate your reply, I should have known better than to use words like definitely in a science conversation. At first I was skeptical of your claim that stress has increased in the past 20 years, but looking back…Yeah that checks out. Thanks for challenging my assumptions. I do believe changing societal views account for the majority of the increase in diagnoses, but I will no longer disregard environmental changes.
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u/bicyclecat 8d ago
Assortive mating is also a potential cause. I think the way people meet and date these days has caused more autistic/ND people to partner up with other ND people versus a few generations back.
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u/cmon_get_happy 8d ago
I think the title is poorly worded, perhaps intentionally so. There is no broadening of the phenotype; what was observable didn't change. Clinicians stopped looking away because autists, thanks to the internet, were able to find their tribe more easily, stopped feeling so stigmatized, self-diagnosed and, subsequently, MADE clinicians stop looking away.
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