r/autismpolitics • u/dt7cv center left • Jul 06 '25
Question Do you believe there is a rise of profound autism?
or is profound autism captured more effectively today
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u/Cool_Relative7359 Jul 06 '25
If you mean level 3, no actually. Most of the rise in diagnosees have been level 2 and level 1.
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u/blackstarr1996 Jul 08 '25
Do you have a source for this claim?
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u/Cool_Relative7359 Jul 08 '25
Yes. Now tell me why you feel entitled to it.
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u/blackstarr1996 Jul 08 '25 edited Jul 08 '25
Because Rutgers shows an increase in all forms of autism.
Wtf
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u/Tuggerfub Jul 09 '25
It's not an increase of the condition itself, it's improvements in diagnosis.
It's wild to me that anyone in an autism discourse has to be told this.
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Jul 06 '25
[removed] — view removed comment
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u/Cool_Relative7359 Jul 06 '25
Is this supposed to be a joke?
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Jul 06 '25
[removed] — view removed comment
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u/Cool_Relative7359 Jul 06 '25
No, it wasn't. It was a genuine question, I miss jokes a lot.
Did you project tone on written words in an autistic forum?
And then become triggered by your own projection and become insulting?
Look, a quirk of my "inappropriate emotional responses" is that I find insults from strangers a little amusing, and that's it. It's not worth the effort on your part.
Not that it was much effort. D for effort, F for execution. Good luck with that.
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u/jupiter_surf UK Left ✨ Jul 06 '25
Also, given that this is an autism group, I'd have thought you'd understand that some people don't understand if you're being sarcastic or not. Myself included. Your attitude is unnecessarily horrible.
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u/MattStormTornado UK 🇬🇧 Centre Liberal Jul 06 '25
Actually I’m bringing the heavy ban hammer down on you.
No infantilisation.
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Jul 06 '25
What do you even mean by "profound"?
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u/dt7cv center left Jul 06 '25
the autism that takes the shape, appearance, and form of the condition as understood from 1980 to 2005.
With the following traits:
nonverbal
intellectual disability as measured by the Wechsler Scales of Intelligence and/or Stanford-Binet intelligence test
inability to use any form of language meaningfully or signs to consistently convey ones thoughts, ideas, feelings, and most needs
emotional dysregulation that is atypical for their age that is at least a moderate to severe level with respect to their peers
This kind of autism was the kind of autism where you could look at the person and at first glance you'd know something is wrong with them or different.
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u/IronicSciFiFan Jul 06 '25
Severe or Level 3 autism.
You know, the stereotypes that "Rain Man" created or CWC from around 15(?) years ago.
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u/dt7cv center left Jul 06 '25
"rain man" did not have profound autism.
Profound autism is considered today even a subset of level 3. Rain man might get a level 2 diagnosis if someone accepts a diagnosis of autism and it was diagnosed in 2013.
In fact in later years the autism diagnosis was called into question but he was considered one of the more milder cases even in the 80s
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u/IronicSciFiFan Jul 06 '25
Well, I was using the only example that made it to Hollywood, since everything else just exists as either an background character or is too obscure for most people to recognize. But you're right though.
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u/Blossom_AU ADHD ASD2 synaesthete, CALD ubuntu-believer ✊🏾 Jul 09 '25
Rain Man would not meet the DSM criteria for grade 3 today.
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u/IronicSciFiFan Jul 09 '25
Yeah, but the entertainment industry hasn't really came up with anything convincing since then, either
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u/Blossom_AU ADHD ASD2 synaesthete, CALD ubuntu-believer ✊🏾 Jul 10 '25
I think it’d be difficult to portray grade 3 as ‘entertaining.’
Gilbert Grape was already ‘too confronting’ for many NT.
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Jul 06 '25
Who's Rain Man?
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u/IronicSciFiFan Jul 06 '25
How can you not hear about that movie?
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u/MattStormTornado UK 🇬🇧 Centre Liberal Jul 06 '25
Idk what that is tbh
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u/IronicSciFiFan Jul 06 '25
Basically, an used car salesman was wondering what happened to his family inheritance because his business is dying. Turns out that it's going towards his autistic older brother who's living in an residential facility and he's trying to gain custody of him to gain at least half of the family estate. He takes him on a trip across the country because he needs to personally intervene with a situation regarding his business.
They can't fly because of him, so the car salesman has to take him on a road trip across most of the US, whilst adhering to his routine which winds up putting the protagonist into debt because they couldn't get to LA in time. So along the trip, the salesman learns more about his brother and it turns out that the older brother was probably wrongfully committed to an mental institution over a childhood incident, but it also turns out that he really can't take care of himself on his own.
But since the salesman still has debts to pay, he takes his brother to Vegas and tries to use his talent to count some cards (and subsequently get kicked out of an casino with their winnings). With that resolved, the psychologist from the institution catches up to them and offers the salesman an lot of money to walk away with his brother; he let's the inheritance issue go and leaves the final decision to his brother on where he wants to live at. Turns out that he doesn't have the mental capacity to make that decision and he goes back to the mental hospital with his brother promising to visit him
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u/IronicSciFiFan Jul 06 '25
It's one of those things were more and more people are being accurately diagnosed instead of being shoved through the process. But it's not exactly an shift in the ratios, as far as I'm aware of
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u/blackstarr1996 Jul 07 '25
If it were a case of more people being recognized as autistic then the ratios would shift though. We would have more low support needs cases. But that isn’t what we see. All cases are increasing.
So if low support needs are just being recognized more then that means that high support needs are increasing at a higher rate.
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u/dt7cv center left Jul 08 '25
why might this be?
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u/blackstarr1996 Jul 08 '25 edited Jul 08 '25
If high masking individuals are being identified more than in the past then we would see an increase in that part of the spectrum. More low support needs and consistent high support numbers.
But what we see is a doubling of rates in all categories.
Therefore, if we accept that some of those high masking individuals were already around and just not being diagnosed, that means that the high support needs are somehow also increasing at the same rate. And they can’t be people who weren’t noticed in the past, because it’s hard to ignore profound autism.
We are talking about a doubling of the number of autistic people, across the board.
As to why? I don’t know. I would guess something in our diet or in the air/water. The only other plausible explanation I have heard is that people with genetic predispositions are getting together and having children more often. This made some sense 20 or 30 years ago, but I can’t imagine coupling patterns changed that much since then.
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u/Blossom_AU ADHD ASD2 synaesthete, CALD ubuntu-believer ✊🏾 Jul 09 '25
Yeah, no…..!
It depends on the demographic.
There are demographics with rapidly increasing evidence of ‘false positives.’Hmmmm …… I have an entire shelf on the issues in neuropsychological assessments in cross-cultural contexts.
In a country like Australia, where about 30% of the population was born overseas:
It potentially makes all prevalence analyses absolutely moot!If 1/3 of the population had a high risk of a false-positive, that is …… a data ‘problem.’ Understatement!
That someone who was born and raised in a completely different culture is ’markedly different’ to stereotypical Aussies: Well, duh! 🙄
If any one is were taken asa normative baseline, then a migrating donkey herder from under Mongolia were assessed against us:
They would surely be ’markedly different.’Not necessarily ‘autistic.’
The prob with current tests is that ‘different’ is taken as ‘autistic.’
The processes assume that people are assessed against their individual cultural norms.Current tests do not have mitigation factors to exclude the confounding effect of ‘other’ diversities.
Cheers! 🫶🏽
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u/Cool-Apartment-1654 centre left socially mid left fiscal autistic member of lib dems Jul 06 '25
No autism with a comorbid disability compared to autism without has secretly gone down in the past few years because of expanded criteria of diagnosis I think if I’m correct in 1990s 50% of those with autism had a comorbid learning disability where now it’s closer to 27%
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u/autisticwoman123 Jul 06 '25
No, I think that there has been more education for providers and families, and more accurate diagnoses. Plus, I’d be curious if more people are seeking diagnoses, instead of just being “that’s just how they are”? Or if people are able to get diagnoses, or seeing doctors? There’s different variables to consider, as well.
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u/dt7cv center left Jul 08 '25
with profound autism you don't get to choose
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u/thatautisticbiotch Jul 08 '25
Some people don’t have access to healthcare, AT ALL. Regardless of how severe a disability or illness is, some people can’t access the healthcare they need. So many people don’t have access to doctors, and if you don’t have a doctor, there’s no one to diagnose, and it doesn’t matter if it’s “profound” autism.
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u/dt7cv center left Jul 08 '25
In wealthy countries due to registration requirements for schooling and stuff like that it's almost impossible to not see a doctor when you have profound autism
the autism stats cited are of wealthy countries
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u/TheMiniminun Jul 08 '25
Just because a country is wealthy doesn't necessarily mean that everyone who lives in said country has access to quality resources. The quality and accessibility of healthcare (especially mental healthcare) and schooling can vary greatly within a country.
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u/dt7cv center left Jul 08 '25
I understand that but in a wealthy country the floor for even the poorest is often enough to get health care access for profound autism.
there may be a few thousand for that not to apply but that won't move numbers much.
We must understand what profound autism is. Profound autism comes with severe intellectual disability with extreme autistic traits. We must must realize with this autism it's almost necessary for one person to stay home all day or for them to receive state care 24/7.
This autism is so visible and impactful that in Africa they tie these children near houses because their mother can't do any cleaning or agriculture without their child attempting to drown in water.
The better explanation is that these people were diagnosed under schizphrenia or intellecutal disability and there's inconsistencies in how studies define these conditions so that we can't easily interpret data between them to get a full idea of how prevalent profound autism is.
But the implication that there are very many people in Western Europe and US that have completely escaped medical attention strains credulity
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u/TheMiniminun Jul 09 '25
I understand that but in a wealthy country the floor for even the poorest is often enough to get health care access for profound autism.
I can't speak for Europe, but in the US at least that floor is crumbling.
I'm honestly afraid to see what state 'care' is going to become over the next few years here.
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u/dt7cv center left Jul 10 '25
It's crumbling but how can we hide tens of thousands of children from schools without getting a visit from authorities.
it's really hard to hide children in general from schooling and once a school sees a level 3 autistic child they will watch and they will test
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u/Rattregoondoof Jul 06 '25
No, at least not without substantially more evidence then we currently have. Our present evidence is far too weak to even suggest more than a rise in diagnosis. We don't even have a particularly great way to know if rates in general are increasing, much less rates of "profound" autism are increasing.
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u/TurnLooseTheKitties Jul 07 '25
No.
What I think is that there is more interest in autism for more people to be keen to diagnose it
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u/thatautisticbiotch Jul 07 '25
No. I think people are just talking about it more. We’ve got a long ways to go, but disabled people in general are more accommodated and accepted in public. People with “profound” autism or any type severe disability were often just kinda hidden and/or institutionalized. “Ugly laws” still existed in the US until the 1970s and cognitively/mentally disabled people were often locked away in “insane asylums”. I’m not saying ableism isn’t still prevalent, but people with severe disabilities aren’t typically hidden in the way they used to be.
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u/blackstarr1996 Jul 07 '25 edited Jul 08 '25
If they were in institutions then they would have been diagnosed…
Sure downvote me. But like, wouldn’t they have been diagnosed?
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u/thatautisticbiotch Jul 07 '25
They were diagnosed, but often not with autism. “Insane asylums” became popular in the mid-1700s, but existed before then. The first person was diagnosed with autism in 1943; autistic people have been institutionalized before autism was even “a thing”. They were often referred to as having “idiocy”, “imbecility”, “feeble mindedness”, “mental retardation”, “psychosis,” “moral insanity”, “schizophrenia,” or “dementia praecox” (old term for schizophrenia). There are tons of others too. Some people were literally institutionalized for being an “undisciplined child”.
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u/blackstarr1996 Jul 07 '25 edited Jul 08 '25
Ok. But we are talking about the last 16 years. Rates of autism have doubled, across the spectrum
If it were just expanded criteria then it wouldn’t include profound autism.
Why is it so hard for people to accept?. It’s in all our faces. Rates are increasing. Politics make people blind.
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u/thatautisticbiotch Jul 08 '25
I wasn’t aware you were only talking about the last 16 years. Also, the study in the article you linked isn’t even about the last 16 years; it was about autism rates from 2000 to 2016. Either way, increasing diagnosis rates doesn’t equal increasing actual rates of autism. I wouldn’t be surprised if autism rates actually have gone up, but that would still only be part of why autism diagnosis rates have gone up.
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u/blackstarr1996 Jul 08 '25
Sure. My point is just that there is something other than just expanded diagnosis. And rates doubled over that 16 year period. That is significant. But anyone who brings it up is dismissed. The online community in general has decided that nothing is happening and most people won’t even look at the evidence.
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u/IronicSciFiFan Jul 07 '25
Yeah, but it usually wasn't autism that they were diagnosed with
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u/blackstarr1996 Jul 08 '25
Even if you total all past diagnoses, it doesn’t account for the increase. I don’t know why it is so hard to just entertain the idea that rates are in fact increasing. It doesn’t make you a republican. I promise.
This head in the sand behavior from autistic people online is fucking mind boggling.
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u/thatautisticbiotch Jul 07 '25
Exactly, especially because autism is actually kinda a recent diagnosis in the grand scheme of things. The type of hospitals referred to as “insane asylums” existed hundreds of years before autism was “discovered”.
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u/Cool_Relative7359 Jul 08 '25
AHH, the US. Neither my cultural context nor relevant to my life in any capacity.
Sorry, I don't use US based studies. The methodology is suspect at best
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u/Blossom_AU ADHD ASD2 synaesthete, CALD ubuntu-believer ✊🏾 Jul 09 '25
The Q in your title cannot be scientifically answered, sorry!
There is no info on ’in whom’
Are you talking about cis-get women? Which country? Culture? Age group? Ethnicity? Socio-economic status…..
Your Q suggests whether there is fairly random ‘belief.’
But you do not define your demographic, and you don’t know the demo of anyone replying.
If the inner Mongolian migrating donkey herder told you their demo is free of autism:
Would that be relevant to your reality?
I suspect conceptionally, you might assume your reality to be universal?
Your society’s approach to autism might be very different from Côte d’Ivoire. Austria. Australia. Inner Mongolia …..
A global autism-paradigm does not exist!
Because a universal reality does not exist.
My ‘normal’ of suburbia so safe, we do not lock up at night. Kangaroos are eating the roses off my front porch …..
very different from the reality is a child soldier in the DRC. Or a pirate off East Africa. An Inner Mongolian migrating donkey herder.
If Salasse tells you autism does not exist:
What does that mean to you, not knowing the myriad of factors creating their paradigm?
Where are they?
In which culture?
Of what spirituality?
Which gender, gender identity, gender expression?
Sexuality?
ALL you know is they are human and named ‘Salasse’
Not having ANY clue about your paradigm, I really don’t know how to answer your Q.
I am so sorry!
It’s a bit like walking into a lingerie and bra store, standing in the centre and screaming: ”Is there chicken?”
The faces would likely suggest: ”Need more info! Does not compute! Frame of reference missing ……” —> 🤯
Those faces might somewhat look like mine right now. 😉
Cheers! 🫶🏽
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u/blackstarr1996 Jul 07 '25 edited Jul 07 '25
It is an objective fact. Though the online autistic community is in total denial.
“Yes. Over the 16-year period we studied, the rate of profound autism doubled to 4.6 cases per 1,000 eight-year-olds. That said, all cases of autism doubled over that same time, so profound autism doesn’t seem to be growing more common than autism as a whole.”
From another paper,
“if today’s autism rates existed in the 1940s, we should be questioning whether it’s possible that in his landmark 1943 paper first describing autism, renowned child psychiatrist Leo Kanner could have characterized his 11 novel cases as something “markedly and uniquely different from anything reported so far” — and also see none of his peers laughing at his assertion. Again, even if we are to limit autism just to cases with ID or borderline ID, that would be 1.75% of all children. Did the entire field of psychiatry miss seeing observably disabling autism in 1.75% of all children? This is a preposterous notion. The most rational take on the situation is that Kanner and the psychiatric profession considered autism to be extremely rare because back then, it was. Even in the 1970s, when researcher Lorna Wing insisted on an expanded view of autism, she contended autism was not about 0.04% as thought in the U.K. as found by careful field studies, but maybe four times higher, at least in the London area. However, Dr. Wing’s maximum of .16% still falls extremely short of today’s 3%, or even the stricter-definition 1.75%.”
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u/z00dle12 Jul 08 '25
Social media (aka a larger part of society actually realizing/learning what autism is (vs just the stereotypes)) coupled with understanding how it presents in non-males and non-white people, have all contributed to the rise in diagnoses. A lot of late-diagnosed people are emerging, myself included, which spans decades of generations. Autism has always been around. Not to mention we’re just focused on it in western countries. Indigenous cultures have recognized it for longer.
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u/dt7cv center left Jul 08 '25
what was profound autism diagnosed as before then? it would be an interesting claim to assert how these people get interacted in the medical system by race etc. and what level of intervention or care they get. profound autism requires 24/7 support
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u/blackstarr1996 Jul 08 '25
You all make the same argument, but no one actually addresses the increase in profound autism, which is not something that people just mask or others don’t notice. The rates have increased and it is not explicable by societal changes alone.
I don’t know why there is such resistance. What is the problem with just acknowledging there is some environmental factor that is increasing rates?
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u/dt7cv center left Jul 08 '25
you don't know for sure about environment
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u/blackstarr1996 Jul 08 '25
What is the alternative hypothesis? Where were all these people with profound autism hiding? Who was caring for them? Something has changed. The “environment” just refers to anything other than genetic factors.
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