> Robert F. Kennedy junior, America’s health secretary, thinks that autism has become an “epidemic” in his country. His concern stems from figures from the Centres for Disease Control and Prevention, which shows that the condition now affects 32 per 1,000 eight-year-old children in America (see chart). That is in contrast, he says, with the near-absence of the condition in his childhood. Mr Kennedy was born in the 1950s, and studies estimate a prevalence of autism to around two to four per 10,000 in the 1960s.
I will admit that I stopped reading the article because I think the article is completely mixing things up and honestly just did not feel like reading anymore of it.
I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
This isn't a post diagnoses understanding either, it is well understood by anyone I have talked to about this in the last 10ish years? (maybe less, I cant really pinpoint that).
While I feel like there is value for professionals to be more specific about it, from an everyday person prospective I feel like "Autism" is well enough understood to be not just a single thing. Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
The real problem is anti-science people joining the conversation, but splitting up Autism is not going to change that.
Edit: To be very clear here I am not trying to say that most people in general are saying "I am somewhere on the spectrum". I am saying that most people I know which a larger portion of the people I regularly talk to are also diagnosed.
What's going on with the brain of any particular person is a point in a very high dimension space. What doctors call conditions are regions in that space. The definition of those regions has something to do with understanding and helping the humans and their families, but also something to do with the doctors making money. In the US Healthcare system nothing can be paid for unless it is in service of treating a "condition". Slightly odd that an article in The Economist doesn't mention this.
It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person. That's called a partition, and its in an entirely separate thing.
When I tell this to people they understand immediately that I am in fact on that "spectrum".
Numerous people don’t realize this or that there’s not some simple consistent blood test to say “yep, he’s got autism.”
Moreover, people have no idea how difficult this makes it to properly test anything related to it because control groups are so difficult. It’s why any type of study that claims something does or does not, definitively “cause autism” is highly unlikely.
You can identify potential contributors, but that’s about as good as it gets.
People in absolutes about this stuff can’t be taken seriously.
> It has always bothered me that by "spectrum" they mean not the sort of continuous thing that spectra actually are, but instead some disjoint set of "colors" any one of which might describe a person.
Wasn't Newton making the point that we normally perceive and treat colors as qualitatively different, but that they're in fact caused by a single underlying mechanism that can take on any of a continuous range of quantities?
Thus using the term "spectrum disorder" would be making precisely the same point, to describe a set of apparently qualitatively different disorders that are in fact caused by some underlying mechanism with a range of quantities? (To be clear, I don't know if any so-called spectrum disorders actually meet this criterion, and it's probably more complicated than that, but it seems to be the reason the term was chosen.)
Isn't a spectrum limited to a single dimension? If yes, that doesn't sound like Autism disorders (Asperger's, ADHD, verbal, non-verbal, violence, exacerbated sensitivity, social abilities...). They all suggest that there are multiple more or less independent/orthogonal. dimensions. And everyone scores differently on the combination of these dimensions. Which puts us on different coordinates in a vector space. Is this still a partition?
I do think the word spectrum is most usefully applied to something that can vary only in a single dimension.
The partition I'm talking about is a set of sets of behaviors. I think the vector space you're talking about is a set of people (each person being a vector on the basis of the sets of behaviors).
So I think we're on the same page, just referring to different parts of the construction. I.e. everybody is somewhere on the verbal/nonverbal spectrum, and somewhere else on the sensitive/tolerant stimulus spectrum and so on for each dimension.
What you are witnessing is the process of "mystification" where it requires an "expert" annointed by some organization to interpret arbitrary criteria to make a politically or economically important determination that can't really be challenged on any objective basis. Since you are not an "expert", you are not permitted to do your own research and therefore by rule are incapable of being able to access the special mystified knowledge that only the "expert" has access to.
Perhaps this is just a different mental model thing, but in a spectrum each of those colors would be, maybe, a frequency of light or maybe even a range of frequencies measured at different intensities. Autism might be thought of as a band in the larger spectrum (think of the infrared or ultraviolet spectrums as subsets of the electromagnetic spectrum), and any one person might emit a different spectrum, like a combination of these different colors. An autistic person, specifically, would exhibit higher intensities in that named spectrum, and conversely the spectrum is identified as a part of the larger spectrum of human experience where people often show similar combinations of colors.
It's always going to be a metaphor, but that's the way that I best understand it.
The Economist should not be treated as reliable source of information on medical issues.
[edit] To be more specific, this is a lazy take and is about as insightful as saying 'cancer should not be treated as a single condition' which for HN is about as meaningful as saying 'the CPU and the GPU may both contain chips, but they should not be programmed the same.'
Disorder by definition means that we do not consider it to have a single cause or issue, and we acknowledge that we don't understand it well enough to give it a single name, cause, or objective diagnostic criteria.
When we know what causes something, or how to strictly and objectively identify it, then we usually call it a disease.
This is well understood by medical professionals, and a normal part of their job, and not confusing for the vast majority of people diagnosed with some disorder or other.
This article is utter trash. As per the usual for the economist
Thanks for that insight. I previously had only a vague notion of why disorder is used. One of the main reasons I don't want to have an official diagnosis is because the word disorder has such a negative connotation. I really don't want any disorders, so if I just ignore it, try not to think about it, maybe it will go away, and then I won't have a disorder.
There are social (cut me some slack, I'm autistic) and in socialized medicine systems, financial benefits to an autism diagnosis. So yeah, why wouldn't you claim to be autistic, what's the downside?
Add to that Gen-Z, socially awkward, isolated and poisoned by their obessive phone addictions frantically searching the internet "Why do I feel socially awkward?" and a million "Take out autism test!" links later get their answer. Yes indeed, they have autism, the test proved it.
What's your thesis here? I'm getting "shy, slightly socially awkward and very intelligent is not what autism is," and "people who are intelligent, knowledgeable, socially tuned and socially integrated claiming to be autistic must obviously be lying, autistics could not possibly be those things."
I am an autist in a family filled with autists - some of whom I think you would CLEARLY recognize as autistic, but some of whom you'd have this "absolute nonsense" reaction to. I say that because that is the reaction I had myself, I was very skeptical of this whole thing until I came to learn a lot about it after my daughter was diagnosed.
I don't think it's mainstream science, but monotropism is a theory of attention which has been theorized as the central underlying feature of autism and you might be interested in looking it up. It makes a lot of sense to me. I think the more mainstream way of talking about it is bottom up processing (details, the trees rather than the forest) vs top down processing (holistic, the forest rather than the trees).
Either way - you can get a very diverse set of results depending on how which sorts of things the individual's attention gets commandeered by, and by how much. Some people can't stop paying attention to individual sounds or individual tactile sensations or any other individual sensation, some people have difficulty putting sentences together despite having an excellent grasp of each word, some get stuck trying to process specific individual facial expressions and fail to grasp the actual social dynamics going on around them - it goes on and on.
Some have special interests (deep attention to a specific topic) that are extremely economically profitable (programming) or simply socially mainstream (music or movies) which give them social cachet. Some have special interests that mark them as weird and socially outcast (collecting bugs, memorizing bus routes). Some are very intelligent and are able to make up for a lot of difficulties with effort. Some have a great focus on social dynamics and come off quite charming. All of this can add up to very different experiences though life, very different sets of difficulties, and that of course can compound.
I think you should expect there to be a very wide variety of autistic people, if there is an underlying similarity in processing things. There is a very wide variety of non-autistic people, too. Heck, I think there's a wide variety of people with only one hand, just because Jim Abbott was a major league baseball pitcher doesn't mean he actually had two hands, and just because Muggsy Bogues was a great NBA player doesn't mean he wasn't short.
Reacting to the headline, I understand the basic concept of medicine is you treat a patient who presents with a condition, not a condition in isolation like some kind of abstract math problem. I think it's a mistake when doctors say to each other, even as a shorthand, I have a gallbladder to deal with, when it's a real person, and the best results come from considering the whole person when pondering how to care for them and which treatments to administer, with the medicine being only a part.
It is perfectly reasonable for the doctor to have "a gallbladder" to deal with--there are few failure modes and a standardized response to them. In specialized fields you will find professionals describe situations in terms of a baseline and any deviations from said baseline--just about completely unintelligible to anyone who doesn't know those baselines. To describe a patient as "a gallbladder" is saying it's a standard presentation of the problem. And doctors are not supposed to identify patients if not necessary.
The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.
I think “neurodivergence” is a better label if the goal is gaining strength in numbers. It fully encompasses autism and autism spectrum related conditions, plus ADHD and others. A lot of people don’t want the label “autistic,” but share experiences with people who do, and would love to offer solidarity as an “inside” rather than “outside” member of the community. We now have “AuDHD spectrum” as a thing, but really, I think optimum numbers might come from including folks who identify as “broadly neurodivergent.”
It also leaves room to start distinguishing/separating out more subtle variants of what we currently umbrella as “autism,” perhaps making it better defined in the future. And I kind of suspect doing this with “less profound” neurodivergencies could help folks with “more profound” (and rarer) cases.
To look at a historical case: Gay Rights didn’t make a lot of headway. But adding lesbians, trans folks, etc. ultimately did a lot of good for that community in the US.
I have serious doubts that an autistic advocate with low support needs, as opposed to 'neurotypicals' or impacted parents, are meaningfully more qualified to represent the needs of autistics with high support needs (e.g. severe intellectual disability, nonverbal, severe self injurious behaviors). Those autism are very very different with very very different lived experiences....and yet, well-meaning autistic advocates often bristle at that idea, almost as if it is an attempt to divide and and destroy autistic advocacy. The neurodiversity vs profound autism battle for hearts and minds continues to rage, and even threatens how and what autism research gets conducted...sometimes with good consequences, sometimes with poor consequences.
I am a proponent of finding neurobiological bases for subgrouping autism into different clinically meaningful etiologies so that the debate can move forward productively. Its one reason that more and more I'd rather forgo acquiring non-autistic controls in my studies, but just look within the autism sample for how to parse the heterogeneity into homogeneous subsets
there's a bunch of BS going on with autism that I find very obnoxious
1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that.
2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too.
3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.
> The main argument in favor of treating it as a single condition tends to come from the advocacy side, rather than from the diagnostic side.
Seeing it as one single conditions is established scientific consensus not some advocacy thing.
The diagnosis "Asperger's" was invented by Hans Asperger, a Nazi scientist that was responsible for the murder of many autistic children. It was never about science. It was invented because he thought that some autistic children might have a potential to become scientist and the like and therefore useful to Nazi Germany and some might not.
Hans Asperger decided which autistic children should be murdered and which one to be spared purely based on ideology.
Autism is something you are born with but support needs can change over your life depending on many factors like you environment, if you are diagnosed early and so on. They are not fixed.
To compare: Three profiles of people with diagnosed Autism.
Blindboy Boatclub: An Irish satirist who wears a plastic bag on his head in public appearances. Formerly of a band called The Rubberbandits. Today he is known for his podcast and has authored three books of short stories. He comes across as eccentric, but he's quite capable of managing in society otherwise.
Side note, one of the other members of The Rubberbandits went by the moniker of Mr Chrome, but is better known to people as Bobby Fingers today.
My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
Wife's student: My wife is a special education teacher and she has a student who is completely non-verbal. However, he is noticeably intelligent and can form complex thoughts and can attempt to express them. Managed to use his visual communication device to insult one of his teachers based on her appearance. He will likely have issues for his entire life and will likely need constant therapy.
Now, what one thing can we do for these three very different autistic people?
There's a reason people say "When you've met one person with autism, you've met one person with autism". While there are some commonalities and typical comorbidities, what we regard as autism presents in so many different ways, it's incredibly difficult to construct a single program to address it.
And I can see why we'd want to break it up. But that gets difficult as well. My stepson started low-verbal. Didn't speak for a while. Spoke rarely for a while longer. And now he speaks a lot. And he's learning when it is appropriate to speak and to handle people speaking around him but not to him. So he was non-verbal. But then became verbal. But not all autistic children cross that border.
> My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
As someone with some similar issues, a) my motor skills are fine, b) the focus on tieing shoes is so frustrating; velcro shoes are everywhere, you can even get Dr. Martens high boots with zippers so you don't have to tie them... like sure, try laces and if it works great... but just provide the accommodation and move on. :P
On the plus side, everyone said playing video games would help my fine motor skills, so I got an out to play a lot of video games, which I enjoyed. :D And my atrocious penmanship hasn't been an issue in adult life, because nobody writes anything anymore (and have you seen the penmanship for kids that were in 2-4th grade during covid ... it's worse than mine!)
I definitely agree. It shouldn't be "autism spectrum", it should be "autism syndrome".
When we have a cluster of symptoms that travel together we can see there's an underlying issue without knowing what that underlying issue is. And we normally use the word "syndrome" for that. For example, AIDS or IBS. And society tends to dismiss it for as long as possible because to face it is to admit there's a problem with no answer. For an example that's still in the denial phase, look at long Covid. There's clearly something there, like AIDS it's a slew of apparently unrelated issues. Which says that, like AIDS, there's probably some underlying issue that is itself very hard to see and we are only seeing the secondary effects.
I’ve long thought that autism is basically a few thousand very normal, small neurodivergencies (which may each be compounded with social effects). The absence of any of them is “perfect functioning human cog/prime chunk of workmeat.”
The presence of too many/particular ones of them is notably disabling for certain tasks, or makes perceiving some things difficult (and other things easier). But I think the presence of some is preferable to having none, and implies “can think abstractly for/about oneself.”
(And yes, a lot of the “problems” that arise with folks on the spectrum happen because, well, being aware of yourself as a cog/workmeat creates friction… It’s important to keep in mind how much of our history of psychological medicine that created the label “autism” is ultimately oriented towards “fixing the cog/workmeat.”)
I agree with your take but interestingly it seems to be both an argument for, and against, calling it a spectrum. Humans are so good at adapting/conforming/masking, and we adjust ourselves toward a common accepted way of behaving, which further confounds the difficulty in understanding the problem.
I think the "spectrum" analogy has reduced stigma overall, especially toward people with poor social skills. But it isn't always helpful.
This is highly accurate.
Presently its a whole set of entirely different diagnosis make up
"the spectrum".
They even eliminated "Asperger" and then just folded that into the
spectrum as well.
I sometimes think about two women sitting on down on a bench.
Once says a bit uneasily "my son, well he is on the spectrum"
The other responds with "Oh I know what you are going
through my daughter is also on the spectrum"
At this point neither has any idea whatsoever about
what the others experience is like.
One may be highly functional, socially awkward and doesn't think
like normal people and processes sight and sounds the same.
I find myself moderately down this path.
I’ve been using “autism that I care about” because a large number of people I encounter are on the spectrum / neurodivergent (hobbies and work I suppose) that require very different interventions and accommodations that people with whatever you call significantly affected people with autism are called (eg, Rain Man, etc).
Not that people low on the spectrum aren’t important, they are, but that just using standard interaction tactics that I would with non-spectrum people works well enough.
So trying to save time that someone doesn’t need to interrupt the conversation to say they are on the spectrum and can only eat smooth foods or whatever.
The article does not mention Pathological Demand Avoidance as a form of autism. Everybody avoids chores they don't like, but people with PDA take it an extreme. For somebody to have PDA enough that it becomes a shade of autism the world exists only in the form of I want and I don't Want so much so that it limits the imagination and perceptions of the world.
For example somebody with PDA autism cannot interpret the nonverbal communications of other people because they have already made the immediate decision that they want to be liked by others, so therefore they are. They cannot try new foods because they may not like it if they do try, so therefore they don't like it already. They would rather suffer hours of punishment grounded in their room than accomplish a 2 minute chore, because they already know in advance they would prefer to not do the chore given a choice to not do it.
People with PDA autism often appear to be sociopaths and pathological liars. They are not either of those things, due only to a minor difference in motivation. Sociopaths don't care if somebody else gets hurt so long as they get what they want, while harm to others does impact somebody with PDA in a very normal way. Since they have no capacity for empathy and color every past observance to fit their world definition of saving face it takes a lot of time with a PDA person to see the distinctions between them and a sociopath.
This is an idiotic media talking point not actually reflected in the clinical evidence. Unifying autism diagnosis under the ASD label was not a mistake, for a lot of reasons.
I'm concerned that the identification of genetic subtypes of ASD, as mentioned in the article, will lead to more terminations of pregnancy. We need people that see the world differently.
Are you willing to be a caregiver for the rest of your life? Are you willing to have whole your life having ruled by needs of someone else with no space for own goals and wishes?
If you are not, why are you trying to force others to go through it?
If anyone must be branded atypical (not saying anyone should but am willing to pushback on those who do) and in need of special attention it should be the historical story-mode dependent who cannot move on from childhood allegory.
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[ 3.2 ms ] story [ 87.5 ms ] threadI'd note that RFK Jr.'s very own aunt was lobotomized then hidden away for something that sounds a lot like autism if diagnosed today. https://en.wikipedia.org/wiki/Rosemary_Kennedy
I think very few people actually consider it a single condition. To the point that most people that I know, including myself, say that we are "somewhere on the spectrum" or some variant of that.
This isn't a post diagnoses understanding either, it is well understood by anyone I have talked to about this in the last 10ish years? (maybe less, I cant really pinpoint that).
While I feel like there is value for professionals to be more specific about it, from an everyday person prospective I feel like "Autism" is well enough understood to be not just a single thing. Enough so that some phrasing along the lines of "my tism is..." is somewhat commonplace.
The real problem is anti-science people joining the conversation, but splitting up Autism is not going to change that.
Edit: To be very clear here I am not trying to say that most people in general are saying "I am somewhere on the spectrum". I am saying that most people I know which a larger portion of the people I regularly talk to are also diagnosed.
When I tell this to people they understand immediately that I am in fact on that "spectrum".
Moreover, people have no idea how difficult this makes it to properly test anything related to it because control groups are so difficult. It’s why any type of study that claims something does or does not, definitively “cause autism” is highly unlikely.
You can identify potential contributors, but that’s about as good as it gets.
People in absolutes about this stuff can’t be taken seriously.
Wasn't Newton making the point that we normally perceive and treat colors as qualitatively different, but that they're in fact caused by a single underlying mechanism that can take on any of a continuous range of quantities?
Thus using the term "spectrum disorder" would be making precisely the same point, to describe a set of apparently qualitatively different disorders that are in fact caused by some underlying mechanism with a range of quantities? (To be clear, I don't know if any so-called spectrum disorders actually meet this criterion, and it's probably more complicated than that, but it seems to be the reason the term was chosen.)
As far as I can tell, everybody else is on some spectrum of "idiot".
It's always some anonymous "they". Those bad people. You know; not reasonable folk like you and me. "Them".
The partition I'm talking about is a set of sets of behaviors. I think the vector space you're talking about is a set of people (each person being a vector on the basis of the sets of behaviors).
So I think we're on the same page, just referring to different parts of the construction. I.e. everybody is somewhere on the verbal/nonverbal spectrum, and somewhere else on the sensitive/tolerant stimulus spectrum and so on for each dimension.
It's always going to be a metaphor, but that's the way that I best understand it.
1. We've seen them long before we could really investigate them.
2. We've already grouped them up based on seeing them in a similar direction.
3. ... But it might turn out they are actually very far away from one-another, or have important differences we weren't able to see before.
[edit] To be more specific, this is a lazy take and is about as insightful as saying 'cancer should not be treated as a single condition' which for HN is about as meaningful as saying 'the CPU and the GPU may both contain chips, but they should not be programmed the same.'
Disorder by definition means that we do not consider it to have a single cause or issue, and we acknowledge that we don't understand it well enough to give it a single name, cause, or objective diagnostic criteria.
When we know what causes something, or how to strictly and objectively identify it, then we usually call it a disease.
This is well understood by medical professionals, and a normal part of their job, and not confusing for the vast majority of people diagnosed with some disorder or other.
This article is utter trash. As per the usual for the economist
Are you shy, slightly socially awkward and very intelligent? You must be "on the spectrum".
The most intelligent, knowledgeable, socially tuned and socially integrated people I see online claim to be autistic. I swear it is absolute nonsense.
There are social (cut me some slack, I'm autistic) and in socialized medicine systems, financial benefits to an autism diagnosis. So yeah, why wouldn't you claim to be autistic, what's the downside?
Add to that Gen-Z, socially awkward, isolated and poisoned by their obessive phone addictions frantically searching the internet "Why do I feel socially awkward?" and a million "Take out autism test!" links later get their answer. Yes indeed, they have autism, the test proved it.
These seem to contradict each other?
What planet are you talking about, because that does not align with my daily experiences on Earth?
I don't think it's mainstream science, but monotropism is a theory of attention which has been theorized as the central underlying feature of autism and you might be interested in looking it up. It makes a lot of sense to me. I think the more mainstream way of talking about it is bottom up processing (details, the trees rather than the forest) vs top down processing (holistic, the forest rather than the trees).
Either way - you can get a very diverse set of results depending on how which sorts of things the individual's attention gets commandeered by, and by how much. Some people can't stop paying attention to individual sounds or individual tactile sensations or any other individual sensation, some people have difficulty putting sentences together despite having an excellent grasp of each word, some get stuck trying to process specific individual facial expressions and fail to grasp the actual social dynamics going on around them - it goes on and on.
Some have special interests (deep attention to a specific topic) that are extremely economically profitable (programming) or simply socially mainstream (music or movies) which give them social cachet. Some have special interests that mark them as weird and socially outcast (collecting bugs, memorizing bus routes). Some are very intelligent and are able to make up for a lot of difficulties with effort. Some have a great focus on social dynamics and come off quite charming. All of this can add up to very different experiences though life, very different sets of difficulties, and that of course can compound.
I think you should expect there to be a very wide variety of autistic people, if there is an underlying similarity in processing things. There is a very wide variety of non-autistic people, too. Heck, I think there's a wide variety of people with only one hand, just because Jim Abbott was a major league baseball pitcher doesn't mean he actually had two hands, and just because Muggsy Bogues was a great NBA player doesn't mean he wasn't short.
In terms of advocacy, there is strength in numbers, and arguably having such a large autism community has been good for both research and support. Potentially breaking that up into several smaller communities might lead to an overall decrease in impact.
On the other hand, pretty much everyone with autism, or families who have children with autism, will tell you that there is wide variation in both severity and presentation. And I think most would welcome better definition of subtypes.
It also leaves room to start distinguishing/separating out more subtle variants of what we currently umbrella as “autism,” perhaps making it better defined in the future. And I kind of suspect doing this with “less profound” neurodivergencies could help folks with “more profound” (and rarer) cases.
To look at a historical case: Gay Rights didn’t make a lot of headway. But adding lesbians, trans folks, etc. ultimately did a lot of good for that community in the US.
I am a proponent of finding neurobiological bases for subgrouping autism into different clinically meaningful etiologies so that the debate can move forward productively. Its one reason that more and more I'd rather forgo acquiring non-autistic controls in my studies, but just look within the autism sample for how to parse the heterogeneity into homogeneous subsets
1) I see autism as non-verbal, no concept that other people or conscious minds exist. That's what -actual- autism is to me. And there are plenty of people like that.
2) In light of the above definition, I see the concept of "autism is on a spectrum" as extremely disrespectful to both autists and non-autists. For example, if I have a deformed pinky toe I'm not now on the "paraplegic spectrum disorder". If my IQ is 99 I'm not on the "braindead spectrum disorder" and so on. Such a system applies a negative label to people with the most extreme form, and simultaneous everyone else gets a taste of that label too.
3) the above smooshiness of definition has caused autism to be embraced by people - people who have legitimate mental disorders - just not autism. Moreso the cluster B family of disorders i.e. the manipulative and dramatic family. They are "neurodivergent" vs "neurotypical" and now they have just conjured manipulative leverage from thin air.
Seeing it as one single conditions is established scientific consensus not some advocacy thing.
The diagnosis "Asperger's" was invented by Hans Asperger, a Nazi scientist that was responsible for the murder of many autistic children. It was never about science. It was invented because he thought that some autistic children might have a potential to become scientist and the like and therefore useful to Nazi Germany and some might not.
Hans Asperger decided which autistic children should be murdered and which one to be spared purely based on ideology.
Autism is something you are born with but support needs can change over your life depending on many factors like you environment, if you are diagnosed early and so on. They are not fixed.
To compare: Three profiles of people with diagnosed Autism.
Blindboy Boatclub: An Irish satirist who wears a plastic bag on his head in public appearances. Formerly of a band called The Rubberbandits. Today he is known for his podcast and has authored three books of short stories. He comes across as eccentric, but he's quite capable of managing in society otherwise.
Side note, one of the other members of The Rubberbandits went by the moniker of Mr Chrome, but is better known to people as Bobby Fingers today.
My stepson: Just a teenager navigating one of the more emotionally turbulent times while being noticeably different. He has fine motor issues and some social deficiencies. The best I could describe it is that he's emotionally a few years behind where other kids his age would be. He has few accommodations, mostly extra time and the ability to leave a situation that is overstimulating him. He's odd, probably always be a bit odd. May never be able to tie his shoes, but with work, he should be able to navigate society as a functioning adult one day.
Wife's student: My wife is a special education teacher and she has a student who is completely non-verbal. However, he is noticeably intelligent and can form complex thoughts and can attempt to express them. Managed to use his visual communication device to insult one of his teachers based on her appearance. He will likely have issues for his entire life and will likely need constant therapy.
Now, what one thing can we do for these three very different autistic people?
There's a reason people say "When you've met one person with autism, you've met one person with autism". While there are some commonalities and typical comorbidities, what we regard as autism presents in so many different ways, it's incredibly difficult to construct a single program to address it.
And I can see why we'd want to break it up. But that gets difficult as well. My stepson started low-verbal. Didn't speak for a while. Spoke rarely for a while longer. And now he speaks a lot. And he's learning when it is appropriate to speak and to handle people speaking around him but not to him. So he was non-verbal. But then became verbal. But not all autistic children cross that border.
All that to say: I dunno. Shit's complicated, yo.
As someone with some similar issues, a) my motor skills are fine, b) the focus on tieing shoes is so frustrating; velcro shoes are everywhere, you can even get Dr. Martens high boots with zippers so you don't have to tie them... like sure, try laces and if it works great... but just provide the accommodation and move on. :P
On the plus side, everyone said playing video games would help my fine motor skills, so I got an out to play a lot of video games, which I enjoyed. :D And my atrocious penmanship hasn't been an issue in adult life, because nobody writes anything anymore (and have you seen the penmanship for kids that were in 2-4th grade during covid ... it's worse than mine!)
"Stomach ache" is not a spectrum disorder, even though is comes in many severities. It's a symptom of dozens of different medical conditions.
I suspect "autism" is similar.
When we have a cluster of symptoms that travel together we can see there's an underlying issue without knowing what that underlying issue is. And we normally use the word "syndrome" for that. For example, AIDS or IBS. And society tends to dismiss it for as long as possible because to face it is to admit there's a problem with no answer. For an example that's still in the denial phase, look at long Covid. There's clearly something there, like AIDS it's a slew of apparently unrelated issues. Which says that, like AIDS, there's probably some underlying issue that is itself very hard to see and we are only seeing the secondary effects.
The presence of too many/particular ones of them is notably disabling for certain tasks, or makes perceiving some things difficult (and other things easier). But I think the presence of some is preferable to having none, and implies “can think abstractly for/about oneself.”
(And yes, a lot of the “problems” that arise with folks on the spectrum happen because, well, being aware of yourself as a cog/workmeat creates friction… It’s important to keep in mind how much of our history of psychological medicine that created the label “autism” is ultimately oriented towards “fixing the cog/workmeat.”)
I think the "spectrum" analogy has reduced stigma overall, especially toward people with poor social skills. But it isn't always helpful.
They even eliminated "Asperger" and then just folded that into the spectrum as well.
I sometimes think about two women sitting on down on a bench. Once says a bit uneasily "my son, well he is on the spectrum" The other responds with "Oh I know what you are going through my daughter is also on the spectrum"
At this point neither has any idea whatsoever about what the others experience is like.
One may be highly functional, socially awkward and doesn't think like normal people and processes sight and sounds the same. I find myself moderately down this path.
The other may be non verbal and violent.
But calling people with social challenges “Assburgers,” I mean, wow. Just wow.
Not that people low on the spectrum aren’t important, they are, but that just using standard interaction tactics that I would with non-spectrum people works well enough.
So trying to save time that someone doesn’t need to interrupt the conversation to say they are on the spectrum and can only eat smooth foods or whatever.
For example somebody with PDA autism cannot interpret the nonverbal communications of other people because they have already made the immediate decision that they want to be liked by others, so therefore they are. They cannot try new foods because they may not like it if they do try, so therefore they don't like it already. They would rather suffer hours of punishment grounded in their room than accomplish a 2 minute chore, because they already know in advance they would prefer to not do the chore given a choice to not do it.
People with PDA autism often appear to be sociopaths and pathological liars. They are not either of those things, due only to a minor difference in motivation. Sociopaths don't care if somebody else gets hurt so long as they get what they want, while harm to others does impact somebody with PDA in a very normal way. Since they have no capacity for empathy and color every past observance to fit their world definition of saving face it takes a lot of time with a PDA person to see the distinctions between them and a sociopath.
If you are not, why are you trying to force others to go through it?
If anyone must be branded atypical (not saying anyone should but am willing to pushback on those who do) and in need of special attention it should be the historical story-mode dependent who cannot move on from childhood allegory.