In Australia, our national broadcaster recently ran a story about a kid who is wildly enthusiastic about pogo-stick jumping and recently set some kind of world record for this activity. At the end of the story the reporter commented that the kid is autistic in language of the "autism is a superpower" kind. To complete the gaucherie, the report closed with an excerpt of the video for "Jump" by Van Halen, seemingly oblivious to the actual meaning of the song's exhortation to "jump".
This was broadcast, not on one of the youth culture programs or channels that we expect to run stuff from left field. It was on the weekday news breakfast program on the main channel.
It's a bit revealing that the person who coined "neurodiversity" was a sociologist, not a clinical psychiatrist or neuroscientist. And that's not even getting into the Too Online stupidity of "neurospicy."
This, or a similar pile of dogshit, seems to show up whenever there are “activists” sticking their nose into issues. The impediment to having a broad, sane, and tolerant public discourse about anything, seems to be the existence and presence of activists.
My question is: how do such people get such an outsized influence (and not just in the autism debate)? FdB mentions a cancelled 2022 Harvard conference. Why was it cancelled? How does a minority of exaggerated voices gain the power to sweep all before it? I suspect it is simply a will to power exercise.
"My question is: how do such people get such an outsized influence (and not just in the autism debate)?"
By appointing oneself as Spokesperson For Persons With Autism Everywhere, and loudly demanding that others recognize this status.
The trajectory of BLM and its leadership shows that the financial and other prospects for those who make a career out of theri victim status and Demand More Rights can be quite fulfilling.
Near as I can tell, black people everywhere did not hold a meeting and appoint BLM leadership to be their official agents. The leadership simply appointed themselves to the job, and made the most out of the possibilites that it offered.
My theory? They are petty little bullies and if they didn’t have some issue to be activists about, they’d be bullying people in some other sphere. The minority of the most vocal/threatening drives out the average person who cares about an issue, but doesn’t make it their whole life and identity. Like the parents that Freddie mentioned—of course they care about autism, and want to advocate for things that will help people on the spectrum, but they have disabled kids to raise, jobs to go to and can’t be on the internet 24/7 calling out people who aren’t lining up perfectly with every talking point.
You see this in politics and some of the trans activism…hell you can see it with some animal rights activists. Religious fundamentalists can also be quite extreme, policing the behavior of other members of the flock. These people exist everywhere—in the workplace we just call them “assholes.” Maybe issues are the new religion—so instead of God bothering and going around sticking their noses into everybody’s business, that personality type has to find an issue to be fundamentalist about.
I think a lot of this happened in response to a sort of culture war over autism in the 2000s. That was when Autism Speaks took over as THE major autistic charity- where there had once been just a bunch of parents groups now there was a whole fundraising apparatus backed by the former head of NBC. And since the Andrew Wakefield scandal was still brewing and not fully debunked they got involved in researching whether there was connection between vaccines and autism. This is around the same time as RFK Jr was making his claims about vaccines and Jenny McCarthy was touting her autistic son around as a reason we should stop vaccinating. But even more controversial was Autism Speaks' rhetoric. They pretty much only centered the parents, ignored autistic people who could speak, and kind of portrayed autism as this life ending disease akin to AIDS. And this was at the same time that high functioning autistics were developing their own network within the blogosphere, so they started pushing back and I guess they eventually won out- because as time went on genetic research only turned up more and more genes related to autism and it became increasingly clear that there probably wasn't one single cause. So autism sort of morphed into an identity.
The “autism speaks parents” rhetoric is so old. Jenny McCarthy not understanding vaccines and some ABA centers formerly using now discredited models/interventions has nothing to do with me or my daughter born in 2020, but just be being a “parent” and having a kid that’s “pre-verbal” (I got smashed for saying non-verbal lol), I’m met with intense disdain by the advocate community, who also helpfully informed me she just self-mutilates because I’m not providing the optimum environment and that she’s not suffering. I guess they know more than me about my life and my daughter, I’m just a parent after all.
Well yeah, like I said it dates back to the 2000s and it hasn't really moved on since then. Autistic self advocates still act like Autism Speaks didn't moderate their language and are still fighting battles they've long since won. I'd argue the actual problem with Autism Speaks in the 2000s was it wasn't even particularly parent centered like older groups, but focused more on celebrity fundraising and lurid awareness campaigns. But its the "autism warrior parents" rhetoric that's stuck around and won't go away. So has the anti-ABA rhetoric which quickly became co-opted by proponents of facilitated communication. If you're wondering why they don't believe in nonverbal autism or severe autism it's because a lot of them have been convinced that every autistic child is secretly a genius who just needs someone to move them around like a ouija board.
I think I've lived my whole life as an undiagnosed autist (bullied since 1st grade for being weird, still figuring out how to get on with normies, virgin at 36, a natural at software development), and I'm with you a 100%. I'm not entirely clear on why the spectrum exists, why it covers people who are non-verbal and non-functional and people who are more functional than me, and I'm fairly high-functioning actually, because I don't get meltdowns and I have a lucrative career.
It's odd, I agree that it would be great if some cure could be developed for the lower ends of the spectrum, but I'm not sure I would choose to be neurotypical myself, I don't want my mind to become people-oriented. I grant that it's unbalanced towards being idea-oriented, and I know most intellectuals are non-autistic and get on with people just fine, but yeah, I don't know, I don't know what a cure would entail for someone like me.
I got some Loop Engage 2 noise cancelling ear plugs to deal with that (my only sensory sensitivity is to noise), and I don't think I have difficulty coping with surprise: I got into a nasty car crash this year, I didn't freeze and was calling 911 like 5 seconds after impact.
"This, of course, is the gentrification of disability. Autism was a neighborhood that was unfairly seen as hardscrabble and rundown by the “neurotypical” world. But a group of autistic people with an unusual amount of privilege decided that it was a great spot to set up shop, they fancied it up, they made more and more of it in their own image, and before you know it, they owned the place. In doing so they drove the original residents out of town."
This is because contemporary western humans lovingly curate and cultivate their personal victim status, the better to parlay that victimhood into Wokemon points.
"The public face of autism has changed from the undoubtedly problematic portrayal of the disorder in the 1989 film Rain Man, a character who was lovable but who was also obviously severely disabled, to contemporary characters whose autism does not result in any particular difficulties at all; they are, instead, simply quirky and adorable and wise and sensitive and lacking in any problems that do not stem from the world’s awful treatment of people with autism...."
Romaniticism is perhaps the ultimate luxury belief. Wild animals put a great deal of effort into concealing pain, injury and disability, lest they become prey.
Thank you for this very thought-provoking essay. I fundamentally agree with you. Interestingly, when I was a special ed teacher, I worked with children who were profoundly autistic, my late son was clearly on the Asperger spectrum, and in my last Substack essay (which you were kind enough to include in your Subscriber Writing) I noted about myself that “Had I been born much later, I probably would’ve been diagnosed with some kind of neuro-divergence… but, at the time, no one had invented the right combination of letters yet.” In addition, I am visually impaired. So, I’ve had a glimpse at the disability/neuro-diversity world from a few different perspectives. Based on my experience, the points with which I most strongly agree are these: First, reframing a disability as a “superpower” does not helps anyone (including me) come to a realistic understanding or acceptance of the challenges that they face. Not being able to see things is not my 'superpower' by any stretch of the imagination. Second, it is also completely unclear to me how a particular disability — or any biological condition, good or bad — comes to be associated with any political or social point of view. As I’ve written a number of times, I think such posturing is driven by an intertwining of (biological) ignorance regarding the condition, hubris, and narcissism. This helps no one. In any event, thank you again for an excellent essay. Sincerely, Frederick
I believe the phenomenon you're describing arose once the "spectrum" model of autism became canon.
Personally, I see neither factual evidence for nor utility in the "spectrum" model of autism. It's a DSM-5 diagnosis that was invented for accounting reasons. In the absence of an underlying physiological or genetic mechanism that neurobiologists can point to say, "This common factor is what causes ALL these behaviors," I don't think it's at all helpful to lump the lack of speech, toileting, etc that's characteristic of what's described as severa autism with the quirkiness that's characteristic of what was once described as Asperger's syndrome.
The thing is, I have an Aspergers diagnosis and my experience it was not simply being "quirky" or "different". I dealt with horrible and embarrassing meltdowns well into my teen years, I struggled badly in getting schoolwork done despite being perfectly capable of understanding the material and while I've gotten to a good point in my life (I'm living on my own and getting a Master's degree) I've still never had meaningful employment- I'm still reliant on my parents for rent, tuition, and healthcare. I think a lot of the people who think Aspergers is just "quirky" are either self diagnosed or not being honest with themselves about how disabling it can be.
You're right that "quirky" is the wrong word there. I have a nephew who was diagnosed "Asperger's" before that label was discarded, & his experiences and behavioral quandaries are a lot like you've described your own. It's definitely a difficult karma.
I guess what I would ask YOU is: Is it a disability or a challenge? This is more than semantics since (in my way of looking at things at least) a challenge is something you can overcome while a disability is something you can only compensate for.
I really don't know honestly. I'm 30 years old and over time some of the symptoms I dealt with as a child went away on their own or with the help of therapy I sought out as an adult. I do feel like I'm far less autistic than I was ten years ago. But I don't know if it's something I'm ever going to completely overcome; I certainly hope so.
Agreed on the self diagnosis thing. Or sometimes not fully self diagnosis, but diagnosis as an adult by LCSWs/NPs/other kinds of providers who aren't properly trained in diagnosis. Diagnostic interviews can be heavily manipulated if the patient already knows the answers the clinician is looking for, and autism diagnosis are a literal tiktok trend.
I mentioned this in another top level comment, but one of my brothers has Asperger's. While he has a great quality of life in many ways that are utterly impossible for low functioning autistic people, he isn't really able to live a normal life due to his social limitations. College went okay for him, and he has plenty of hobbies and interests, but employment has been a struggle, and his social life offline and outside the family is nonexistent. His rigid thinking contributes to ongoing mental health issues.
In some ways, I do think the social model of disability does apply to him, in that if there was a local program to hire/employ autistic IT staff or programmers, he would be able to get and hold down a job. When he's in a typical job interview process looking for people skills, or he has a manager who expects employees to demonstrate theory of mind in their interactions, he struggles immensely. He struggles even more with less competitive jobs like retail or warehouse workers because of his poor physical coordination.
I am not a neurologist or a shrink or anything, so perhaps I should keep my yap shut, but I thought "autism" was really a catchall term for a series of little-understood conditions that stem from a variety of causes and may have little in common other than broadly similar symptoms?
That's honestly what I've come to believe. I think it's become a wastebasket for a bunch of different conditions- and I'm not sure its entirely the fault of the DSM V alone.
It's possible. I'm not a medical professional myself, but my own theory is that it has one common cause - a miscalibration of the predictive processing mechanisms of the brain, where the brain is hypersensitized to unexpected facts/events/sensations/body feedback/etc. The same mechanism would also cause poor motor control. And essentially all the other symptoms are extremely individualized coping mechanisms to avoid or control unexpected/intense stimuli.
When I did guardian ad litem work, I was assigned a fair number of 18 year old autistic teens whose parent(s) were seeking adult guardianship of them. I went to houses where totally nonverbal autistic teens were banging their head on the wall. I went to one where you could hear the moans as you walked up to the door, and that went on for most of the daylight hours according to mom.
I also met some who came to my office, looked at the floor most of the time and mumbled some answers, mostly parroting words their parent would say (and if you took mom or dad out of the room, they would say very little if anything, but you still had to try.)
Those are both real autism, in varying degrees. But what gets called "autism" in discourse these days often includes teens who had what we'd call Asperger's, back before they unwisely eliminated that term. They like dinosaurs and trains too much, and obsess over baseball statistics or immersive simulation style video games. Those people have some social hurdles, but they never belonged in the same category as either group I dealt with. There was a combination of political motivation, funding motivation and "woke"-ish motivation for ending the Asperger's diagnosis, but it is beyond obvious that these are 2 completely different things happening and we need a word to describe real autism and separate it from Dinosaur Train autism, and to provide very different types of assistance and support and political action to these extremely different problems.
Honestly as someone with Aspergers who's spent a good amount of time among people on the high end of the spectrum, I'm not positive these are two different things so much as many different things. I think a bunch of different developmental disorders and genetic conditions are being lumped in together as autism because they sometimes show similar symptoms.
Thank you for the “cruelty” comment! My son is 34 and I advocate on a few different platforms, and parents are struggling with the disappearing advocacy for our children. Statistics show that 25% of people qualify for the term “profound autism”, yet they only are represented in 6% of research. That is a civil rights violation in my eyes.
One of my brothers has the condition formerly known as Asperger's, and was referred to at the time of diagnosis as being mildly affected and possibly not even diagnosable. He's still much more affected than any loud autism self advocate I've ever known.
He was able to graduate college with a computer science degree but has always struggled to hold down/get jobs because his ability to play the social games needed to pass an interview or keep a manager happy is basically 0. He has rarely had any friends and never a romantic partner, and has struggled with various mental health issues related to the autism throughout his life. Unless our mom coaches him through getting ready in the morning he is always visibly unkempt and perceived as weird/crazy/unprofessional at best. He's in his 30s and our elderly parents still act as his caregivers and they are deeply concerned about what his life will be like after they die.
That is what high functioning autism typically looks like. Not an employed, married Ivy League graduate who excels at status games, yet that is who we are supposed to listen to on the topic.
I was glad to learn about the autism spectrum because it clearly described my sister. It made it easier to explain how and why she is different. She doesn't think of herself that way and would probably be offended if we said suggested it. My sister has no abstract reasoning and is obsessive compulsive. It has definitely made her life difficult, though she's managed fairly well.
It's flat out crazy to take the highest functioning on a spectrum and make them the poster child for the entire spectrum. There's a world of difference between a person with severe autism and my sister.
I've spoken before about my schizophrenic nephew. He's finally gotten into an outpatient program after four years of lock down institutionalization. I'm looking forward to bringing him up to visit for a week or two. It's been over eight years. It took years to get him to a less restrictive place because of the lack of available spots.
Most everything thing Freddie says also applies to the severely intellectually disabled. My daughter was profoundly brain damanged-she never developed beyond a newborn level during her seven years of life. We were very lucky to be able to place her in a skilled pediatric nursing home. She got the medical care she needed and we were able to have a normal family life with our other two kids. Now all parents of disabled kids, from the mildly disabled to the profoundly disabled, are being fed the "all children must be cared for at home" bullshit which completely ignores what it's like to care for a child day in and day out who does not smile and does not know who you are. Sometimes "institutionalization" is, in fact, the best answer.
"This is a fight that needs to be had, and in the next several years I intend to have it." You go, Freddie. A bunch of us will cheer you on and spread the word to our professional colleagues and friends.
The “gentrified high functioning autistics” do have real problems for which the activists are able to deliver solutions (sensory accommodations, protection from discrimination at work, just a general sense you don’t have to hate yourself for your social failures, etc.).
If a more sensible movement could deliver these solutions it would probably peel off most of the support from the most radical disability activists. Should be part of the strategy.
Maybe I’m not being fair, but one thing I’ve noticed from activists who identify as autistic is that they seem to believe they are the only people who are ever uncomfortable or ever fail in social situations. I think it creates a weird belief that “neurotypical” people read ever social cue correctly and never struggle with conversations and basically just breeze through life without a social care, and therefore don’t deserve any grace when they fail in a social situation, since they have no excuse. A lot of the accommodations autism activists demand seem either unnecessary or courtesies that could be reasonably extended to everyone.
maybe circa 2024 so many people have decided they’re autistic that it is now truly meaningless.
But for a long time it was a group of people who really did have clear social deficits, like they could absolutely not “pass” for neurotypical for more than a few minutes. even more strongly during childhood. so they do have problems even though their interests conflict with lower-functioning people.
This may also be more common in women who, online, seem to see any even mild discomfort in social situations as proof of autism. This is from ABC News:
Common signs of autism in girls:
A desire to interact with others
A tendency to mimic others in social situations
Passivity, often perceived as "just being shy"
One or few close friendships
A tendency to "camouflage" difficulties
Developmentally appropriate language skills
A vivid imagination
Less severe and frequent repetitive behaviours
It’s hard to not see this list encompassing anyone who isn’t an extreme extrovert.
I think this is just meant as a contrast with autistic boys, whose language skills are often developmentally delayed. One thing I’ve heard autistic male friends say is that they didn’t say their first words for years past when other kids did, but once they did speak, it was in full sentences.
I'm a women who didn't get diagnosed with Aspergers until I was 17 and while many of these things do describe me, they're essentially qualifiers. I wasn't diagnosed on the basis of these things I was diagnosed on the basis of extreme food restriction and sensitivity to noise and sound, and the fact that I was having public meltdowns at 17. Honestly I think this is just a description of what differentiates someone with Aspergers from someone with lower functioning autism.
The idea of “special interests” is another area where they do this. I’ve seen so many online discussions where someone will say “autistic people have special interests .” Someone will respond, “yeah, everyone does.” And then the autistic person will say, “no, those aren’t SPECIAL INTERESTS, my interests are REALLY special.”
(That’s one of the reasons why I’ve been amused by this year’s “Roman Empire” meme, since it’s essentially leading people to say what their Special Interests are without aggravating the internet bullies.)
I’d love to know what would happen if some of these activists who say autism is a superpower and that there is no such thing as more or less severe autism were to spend a couple of days caring for a child or adult who is nonverbal and/or severely intellectually disabled and unable to care for themselves.
In Australia, our national broadcaster recently ran a story about a kid who is wildly enthusiastic about pogo-stick jumping and recently set some kind of world record for this activity. At the end of the story the reporter commented that the kid is autistic in language of the "autism is a superpower" kind. To complete the gaucherie, the report closed with an excerpt of the video for "Jump" by Van Halen, seemingly oblivious to the actual meaning of the song's exhortation to "jump".
This was broadcast, not on one of the youth culture programs or channels that we expect to run stuff from left field. It was on the weekday news breakfast program on the main channel.
Here's the report: "Lachlan is autistic, so he has a few superpowers...".
https://youtu.be/mhYcl02B2WQ?si=LtmCQW52_k_P7qs4
It's a bit revealing that the person who coined "neurodiversity" was a sociologist, not a clinical psychiatrist or neuroscientist. And that's not even getting into the Too Online stupidity of "neurospicy."
I’ve never heard of neurospicy omg
It’s really popular with newly diagnosed ADHD people I know, the kind who seemingly haven’t struggled with ADHD since childhood like many of us.
:(. I think you nailed it (and captured a lot) with “too online stupidity.”
This, or a similar pile of dogshit, seems to show up whenever there are “activists” sticking their nose into issues. The impediment to having a broad, sane, and tolerant public discourse about anything, seems to be the existence and presence of activists.
My question is: how do such people get such an outsized influence (and not just in the autism debate)? FdB mentions a cancelled 2022 Harvard conference. Why was it cancelled? How does a minority of exaggerated voices gain the power to sweep all before it? I suspect it is simply a will to power exercise.
"My question is: how do such people get such an outsized influence (and not just in the autism debate)?"
By appointing oneself as Spokesperson For Persons With Autism Everywhere, and loudly demanding that others recognize this status.
The trajectory of BLM and its leadership shows that the financial and other prospects for those who make a career out of theri victim status and Demand More Rights can be quite fulfilling.
Near as I can tell, black people everywhere did not hold a meeting and appoint BLM leadership to be their official agents. The leadership simply appointed themselves to the job, and made the most out of the possibilites that it offered.
My theory? They are petty little bullies and if they didn’t have some issue to be activists about, they’d be bullying people in some other sphere. The minority of the most vocal/threatening drives out the average person who cares about an issue, but doesn’t make it their whole life and identity. Like the parents that Freddie mentioned—of course they care about autism, and want to advocate for things that will help people on the spectrum, but they have disabled kids to raise, jobs to go to and can’t be on the internet 24/7 calling out people who aren’t lining up perfectly with every talking point.
You see this in politics and some of the trans activism…hell you can see it with some animal rights activists. Religious fundamentalists can also be quite extreme, policing the behavior of other members of the flock. These people exist everywhere—in the workplace we just call them “assholes.” Maybe issues are the new religion—so instead of God bothering and going around sticking their noses into everybody’s business, that personality type has to find an issue to be fundamentalist about.
I think a lot of this happened in response to a sort of culture war over autism in the 2000s. That was when Autism Speaks took over as THE major autistic charity- where there had once been just a bunch of parents groups now there was a whole fundraising apparatus backed by the former head of NBC. And since the Andrew Wakefield scandal was still brewing and not fully debunked they got involved in researching whether there was connection between vaccines and autism. This is around the same time as RFK Jr was making his claims about vaccines and Jenny McCarthy was touting her autistic son around as a reason we should stop vaccinating. But even more controversial was Autism Speaks' rhetoric. They pretty much only centered the parents, ignored autistic people who could speak, and kind of portrayed autism as this life ending disease akin to AIDS. And this was at the same time that high functioning autistics were developing their own network within the blogosphere, so they started pushing back and I guess they eventually won out- because as time went on genetic research only turned up more and more genes related to autism and it became increasingly clear that there probably wasn't one single cause. So autism sort of morphed into an identity.
The “autism speaks parents” rhetoric is so old. Jenny McCarthy not understanding vaccines and some ABA centers formerly using now discredited models/interventions has nothing to do with me or my daughter born in 2020, but just be being a “parent” and having a kid that’s “pre-verbal” (I got smashed for saying non-verbal lol), I’m met with intense disdain by the advocate community, who also helpfully informed me she just self-mutilates because I’m not providing the optimum environment and that she’s not suffering. I guess they know more than me about my life and my daughter, I’m just a parent after all.
Well yeah, like I said it dates back to the 2000s and it hasn't really moved on since then. Autistic self advocates still act like Autism Speaks didn't moderate their language and are still fighting battles they've long since won. I'd argue the actual problem with Autism Speaks in the 2000s was it wasn't even particularly parent centered like older groups, but focused more on celebrity fundraising and lurid awareness campaigns. But its the "autism warrior parents" rhetoric that's stuck around and won't go away. So has the anti-ABA rhetoric which quickly became co-opted by proponents of facilitated communication. If you're wondering why they don't believe in nonverbal autism or severe autism it's because a lot of them have been convinced that every autistic child is secretly a genius who just needs someone to move them around like a ouija board.
I think I've lived my whole life as an undiagnosed autist (bullied since 1st grade for being weird, still figuring out how to get on with normies, virgin at 36, a natural at software development), and I'm with you a 100%. I'm not entirely clear on why the spectrum exists, why it covers people who are non-verbal and non-functional and people who are more functional than me, and I'm fairly high-functioning actually, because I don't get meltdowns and I have a lucrative career.
It's odd, I agree that it would be great if some cure could be developed for the lower ends of the spectrum, but I'm not sure I would choose to be neurotypical myself, I don't want my mind to become people-oriented. I grant that it's unbalanced towards being idea-oriented, and I know most intellectuals are non-autistic and get on with people just fine, but yeah, I don't know, I don't know what a cure would entail for someone like me.
I think a cure would increase the brain's ability to cope with surprising or sensation-heavy situations. If so, I'd be thrilled with it.
I got some Loop Engage 2 noise cancelling ear plugs to deal with that (my only sensory sensitivity is to noise), and I don't think I have difficulty coping with surprise: I got into a nasty car crash this year, I didn't freeze and was calling 911 like 5 seconds after impact.
The painful part is in getting on with people.
"This, of course, is the gentrification of disability. Autism was a neighborhood that was unfairly seen as hardscrabble and rundown by the “neurotypical” world. But a group of autistic people with an unusual amount of privilege decided that it was a great spot to set up shop, they fancied it up, they made more and more of it in their own image, and before you know it, they owned the place. In doing so they drove the original residents out of town."
This is because contemporary western humans lovingly curate and cultivate their personal victim status, the better to parlay that victimhood into Wokemon points.
"The public face of autism has changed from the undoubtedly problematic portrayal of the disorder in the 1989 film Rain Man, a character who was lovable but who was also obviously severely disabled, to contemporary characters whose autism does not result in any particular difficulties at all; they are, instead, simply quirky and adorable and wise and sensitive and lacking in any problems that do not stem from the world’s awful treatment of people with autism...."
Romaniticism is perhaps the ultimate luxury belief. Wild animals put a great deal of effort into concealing pain, injury and disability, lest they become prey.
Thank you for this very thought-provoking essay. I fundamentally agree with you. Interestingly, when I was a special ed teacher, I worked with children who were profoundly autistic, my late son was clearly on the Asperger spectrum, and in my last Substack essay (which you were kind enough to include in your Subscriber Writing) I noted about myself that “Had I been born much later, I probably would’ve been diagnosed with some kind of neuro-divergence… but, at the time, no one had invented the right combination of letters yet.” In addition, I am visually impaired. So, I’ve had a glimpse at the disability/neuro-diversity world from a few different perspectives. Based on my experience, the points with which I most strongly agree are these: First, reframing a disability as a “superpower” does not helps anyone (including me) come to a realistic understanding or acceptance of the challenges that they face. Not being able to see things is not my 'superpower' by any stretch of the imagination. Second, it is also completely unclear to me how a particular disability — or any biological condition, good or bad — comes to be associated with any political or social point of view. As I’ve written a number of times, I think such posturing is driven by an intertwining of (biological) ignorance regarding the condition, hubris, and narcissism. This helps no one. In any event, thank you again for an excellent essay. Sincerely, Frederick
I believe the phenomenon you're describing arose once the "spectrum" model of autism became canon.
Personally, I see neither factual evidence for nor utility in the "spectrum" model of autism. It's a DSM-5 diagnosis that was invented for accounting reasons. In the absence of an underlying physiological or genetic mechanism that neurobiologists can point to say, "This common factor is what causes ALL these behaviors," I don't think it's at all helpful to lump the lack of speech, toileting, etc that's characteristic of what's described as severa autism with the quirkiness that's characteristic of what was once described as Asperger's syndrome.
The thing is, I have an Aspergers diagnosis and my experience it was not simply being "quirky" or "different". I dealt with horrible and embarrassing meltdowns well into my teen years, I struggled badly in getting schoolwork done despite being perfectly capable of understanding the material and while I've gotten to a good point in my life (I'm living on my own and getting a Master's degree) I've still never had meaningful employment- I'm still reliant on my parents for rent, tuition, and healthcare. I think a lot of the people who think Aspergers is just "quirky" are either self diagnosed or not being honest with themselves about how disabling it can be.
You're right that "quirky" is the wrong word there. I have a nephew who was diagnosed "Asperger's" before that label was discarded, & his experiences and behavioral quandaries are a lot like you've described your own. It's definitely a difficult karma.
I guess what I would ask YOU is: Is it a disability or a challenge? This is more than semantics since (in my way of looking at things at least) a challenge is something you can overcome while a disability is something you can only compensate for.
I really don't know honestly. I'm 30 years old and over time some of the symptoms I dealt with as a child went away on their own or with the help of therapy I sought out as an adult. I do feel like I'm far less autistic than I was ten years ago. But I don't know if it's something I'm ever going to completely overcome; I certainly hope so.
Agreed on the self diagnosis thing. Or sometimes not fully self diagnosis, but diagnosis as an adult by LCSWs/NPs/other kinds of providers who aren't properly trained in diagnosis. Diagnostic interviews can be heavily manipulated if the patient already knows the answers the clinician is looking for, and autism diagnosis are a literal tiktok trend.
I mentioned this in another top level comment, but one of my brothers has Asperger's. While he has a great quality of life in many ways that are utterly impossible for low functioning autistic people, he isn't really able to live a normal life due to his social limitations. College went okay for him, and he has plenty of hobbies and interests, but employment has been a struggle, and his social life offline and outside the family is nonexistent. His rigid thinking contributes to ongoing mental health issues.
In some ways, I do think the social model of disability does apply to him, in that if there was a local program to hire/employ autistic IT staff or programmers, he would be able to get and hold down a job. When he's in a typical job interview process looking for people skills, or he has a manager who expects employees to demonstrate theory of mind in their interactions, he struggles immensely. He struggles even more with less competitive jobs like retail or warehouse workers because of his poor physical coordination.
I am not a neurologist or a shrink or anything, so perhaps I should keep my yap shut, but I thought "autism" was really a catchall term for a series of little-understood conditions that stem from a variety of causes and may have little in common other than broadly similar symptoms?
This may also explain the "autism spectrum" term?
That's honestly what I've come to believe. I think it's become a wastebasket for a bunch of different conditions- and I'm not sure its entirely the fault of the DSM V alone.
It's possible. I'm not a medical professional myself, but my own theory is that it has one common cause - a miscalibration of the predictive processing mechanisms of the brain, where the brain is hypersensitized to unexpected facts/events/sensations/body feedback/etc. The same mechanism would also cause poor motor control. And essentially all the other symptoms are extremely individualized coping mechanisms to avoid or control unexpected/intense stimuli.
“Out of long term institutions”…” struggling to keep a severely autistic child out of some sort of group home”
Interesting, my impression was the main issue was getting them into long term institutions and group homes.
When I did guardian ad litem work, I was assigned a fair number of 18 year old autistic teens whose parent(s) were seeking adult guardianship of them. I went to houses where totally nonverbal autistic teens were banging their head on the wall. I went to one where you could hear the moans as you walked up to the door, and that went on for most of the daylight hours according to mom.
I also met some who came to my office, looked at the floor most of the time and mumbled some answers, mostly parroting words their parent would say (and if you took mom or dad out of the room, they would say very little if anything, but you still had to try.)
Those are both real autism, in varying degrees. But what gets called "autism" in discourse these days often includes teens who had what we'd call Asperger's, back before they unwisely eliminated that term. They like dinosaurs and trains too much, and obsess over baseball statistics or immersive simulation style video games. Those people have some social hurdles, but they never belonged in the same category as either group I dealt with. There was a combination of political motivation, funding motivation and "woke"-ish motivation for ending the Asperger's diagnosis, but it is beyond obvious that these are 2 completely different things happening and we need a word to describe real autism and separate it from Dinosaur Train autism, and to provide very different types of assistance and support and political action to these extremely different problems.
Honestly as someone with Aspergers who's spent a good amount of time among people on the high end of the spectrum, I'm not positive these are two different things so much as many different things. I think a bunch of different developmental disorders and genetic conditions are being lumped in together as autism because they sometimes show similar symptoms.
"And debate it I will. This is necessary work."
I agree. If I haven't been following you for a few years I'd have no idea that this was happening. The cruelty of this behavior is terrifying.
Me too and I’m so very grateful to have found Freddie’s work
Thank you for the “cruelty” comment! My son is 34 and I advocate on a few different platforms, and parents are struggling with the disappearing advocacy for our children. Statistics show that 25% of people qualify for the term “profound autism”, yet they only are represented in 6% of research. That is a civil rights violation in my eyes.
One of my brothers has the condition formerly known as Asperger's, and was referred to at the time of diagnosis as being mildly affected and possibly not even diagnosable. He's still much more affected than any loud autism self advocate I've ever known.
He was able to graduate college with a computer science degree but has always struggled to hold down/get jobs because his ability to play the social games needed to pass an interview or keep a manager happy is basically 0. He has rarely had any friends and never a romantic partner, and has struggled with various mental health issues related to the autism throughout his life. Unless our mom coaches him through getting ready in the morning he is always visibly unkempt and perceived as weird/crazy/unprofessional at best. He's in his 30s and our elderly parents still act as his caregivers and they are deeply concerned about what his life will be like after they die.
That is what high functioning autism typically looks like. Not an employed, married Ivy League graduate who excels at status games, yet that is who we are supposed to listen to on the topic.
I was glad to learn about the autism spectrum because it clearly described my sister. It made it easier to explain how and why she is different. She doesn't think of herself that way and would probably be offended if we said suggested it. My sister has no abstract reasoning and is obsessive compulsive. It has definitely made her life difficult, though she's managed fairly well.
It's flat out crazy to take the highest functioning on a spectrum and make them the poster child for the entire spectrum. There's a world of difference between a person with severe autism and my sister.
I've spoken before about my schizophrenic nephew. He's finally gotten into an outpatient program after four years of lock down institutionalization. I'm looking forward to bringing him up to visit for a week or two. It's been over eight years. It took years to get him to a less restrictive place because of the lack of available spots.
Most everything thing Freddie says also applies to the severely intellectually disabled. My daughter was profoundly brain damanged-she never developed beyond a newborn level during her seven years of life. We were very lucky to be able to place her in a skilled pediatric nursing home. She got the medical care she needed and we were able to have a normal family life with our other two kids. Now all parents of disabled kids, from the mildly disabled to the profoundly disabled, are being fed the "all children must be cared for at home" bullshit which completely ignores what it's like to care for a child day in and day out who does not smile and does not know who you are. Sometimes "institutionalization" is, in fact, the best answer.
"This is a fight that needs to be had, and in the next several years I intend to have it." You go, Freddie. A bunch of us will cheer you on and spread the word to our professional colleagues and friends.
The “gentrified high functioning autistics” do have real problems for which the activists are able to deliver solutions (sensory accommodations, protection from discrimination at work, just a general sense you don’t have to hate yourself for your social failures, etc.).
If a more sensible movement could deliver these solutions it would probably peel off most of the support from the most radical disability activists. Should be part of the strategy.
Maybe I’m not being fair, but one thing I’ve noticed from activists who identify as autistic is that they seem to believe they are the only people who are ever uncomfortable or ever fail in social situations. I think it creates a weird belief that “neurotypical” people read ever social cue correctly and never struggle with conversations and basically just breeze through life without a social care, and therefore don’t deserve any grace when they fail in a social situation, since they have no excuse. A lot of the accommodations autism activists demand seem either unnecessary or courtesies that could be reasonably extended to everyone.
maybe circa 2024 so many people have decided they’re autistic that it is now truly meaningless.
But for a long time it was a group of people who really did have clear social deficits, like they could absolutely not “pass” for neurotypical for more than a few minutes. even more strongly during childhood. so they do have problems even though their interests conflict with lower-functioning people.
This may also be more common in women who, online, seem to see any even mild discomfort in social situations as proof of autism. This is from ABC News:
Common signs of autism in girls:
A desire to interact with others
A tendency to mimic others in social situations
Passivity, often perceived as "just being shy"
One or few close friendships
A tendency to "camouflage" difficulties
Developmentally appropriate language skills
A vivid imagination
Less severe and frequent repetitive behaviours
It’s hard to not see this list encompassing anyone who isn’t an extreme extrovert.
“A desire to interact with others,” and “A tendency to mimic others in social situations…camouflaging difficulties……that describes 99% of humanity.
I liked “developmentally appropriate language skills” making the list.
I think this is just meant as a contrast with autistic boys, whose language skills are often developmentally delayed. One thing I’ve heard autistic male friends say is that they didn’t say their first words for years past when other kids did, but once they did speak, it was in full sentences.
I'm a women who didn't get diagnosed with Aspergers until I was 17 and while many of these things do describe me, they're essentially qualifiers. I wasn't diagnosed on the basis of these things I was diagnosed on the basis of extreme food restriction and sensitivity to noise and sound, and the fact that I was having public meltdowns at 17. Honestly I think this is just a description of what differentiates someone with Aspergers from someone with lower functioning autism.
What frequently strikes me about these discussions is the extent to which the possibility of universal experience has to be rejected.
The idea of “special interests” is another area where they do this. I’ve seen so many online discussions where someone will say “autistic people have special interests .” Someone will respond, “yeah, everyone does.” And then the autistic person will say, “no, those aren’t SPECIAL INTERESTS, my interests are REALLY special.”
(That’s one of the reasons why I’ve been amused by this year’s “Roman Empire” meme, since it’s essentially leading people to say what their Special Interests are without aggravating the internet bullies.)
I’d love to know what would happen if some of these activists who say autism is a superpower and that there is no such thing as more or less severe autism were to spend a couple of days caring for a child or adult who is nonverbal and/or severely intellectually disabled and unable to care for themselves.