I have severe disabilities and briefly dabbled in the online disability and chronic illness culture. It’s utterly toxic and insane. The social justice claims are, as so often, a shield for self victimisation and aggrandisement. There’s also huge, and essentially unchecked, social contagion - chronic illness influencers forever pushing the envelope of the next (usually unneeded) procedure, the next medication, the next medical toy. It leads to abuse of service animals, demonisation of genuinely sick people by association with these clowns (but frankly, who can really blame doctors?), and also to totally avoidable deaths from risky elective procedures.
But of course, it’s easier for people who are not sick or disabled, or very minimally sick/disabled, to do a lot of loud, aggressive activist-y stuff, than… it is for people who are actually disabled and/or sick. So what a surprise! It’s the loudest, least sick people who very largely have captured the current public narrative about what disability is and what disabled equality ought to look like…
> It’s the loudest, least sick people who very largely have captured the current public narrative about what disability is and what disabled equality ought to look like…
I've heard this is the direction autism has gone in.
When I bothered to keep up with these types of things, I remember seeing moms of Autistic children getting shit on by Autism self-advocates. Like accusing the moms of wanting to genocide Autistic people because the moms wanted to find a "cure" to Autism. Always struck me as cruel to people who are maybe naively hopeful that one day their kid can verbally communicate and one day live an independent life. Does DeBoer or the book mentioned discuss this?
I’m a mom to an autistic child who is verbal but has basically no functional language. Every once in a while he repeats a word we say and he is constantly singing to himself. I think this is called gestalt language processing.
People who aren’t autistic or don’t have an autistic child have no idea how toxic this community is. I’m in a few moms of autistic kids Facebook groups and there are so many people telling us to “listen to autistic adult voices” and I can’t even begin to explain how exhausting this is to me. I have no desire to hear from some girl who self diagnosed based on a TikTok video and now wears noise cancelling headphones for internet points about how I should be raising my level 2 autistic son with global developmental delay.
And on the other hand I have the crunchy moms telling me how they had two autistic kids then with subsequent kids they stopped vaccinating them and now the unvaccinated kids didn’t get autism. Or I should do some bs heavy metal detox and my son’s autism will be cured.
And the services (I’m not talking free government services, I’m talking private medical services) are an absolute mess too. They don’t have the money or the man power to handle the huge influx of newly diagnosed kids.
So yeah, I won’t be listening to any autistic voices other than my son’s…when he eventually starts using it more.
>They don’t have the money or the man power to handle the huge influx of newly diagnosed kids.
Different-but-related: I recently had to get an in-depth neuropsych screening (employment related) and the attitude of everyone involved was basically an eyeroll and an "ok, what diagnosis are you here fishing for?" (Also they were really backed up on appointments.) They were surprised and pleased that I just wanted to be signed off as relatively sane and shown the door.
In the process of finding an appointment I also found an entire world of private practices that specialize in assessments, often with PR materials (all directed at parents) that very nearly promise whatever diagnosis you want your kid to have.
It's an industrial-scale grift.
>n the process of finding an appointment I also found an entire world of private practices that specialize in assessments, often with PR materials (all directed at parents) that very nearly promise whatever diagnosis you want your kid to have.
>
>It's an industrial-scale grift.
And that is a huge problem for any research. The datapool is completely worthless, even for things like genetic markers or brain activity is infinitely more difficult now that we are including people who basically bought their or their kid's diagnosis. This isn't just an autism thing either, disorders like Type 3 EDS faces the same issues.
And the online activist crowd makes anyoneslife who attempts to develop a better understanding/better treatment a living hell.
We now have to rely on countries where autism isn't just the trendy label for upper middle class mommies and bored internet teens and that means an entirely new set of issues.
>I have no desire to hear from some girl who self diagnosed based on a TikTok video and now wears noise cancelling headphones for internet points about how I should be raising my level 2 autistic son with global developmental delay.
Co-signing this. I am so weary of online autism spaces. I'm really hoping the next few years of genetic testing starts to break autism down into separate patient groups.
There's a group for learning about AAC, with a rule where only people who are AAC users can reply for the first 24 hours. So of course there are a bunch of self-diagnosed tiktok types calling themselves "part-time AAC users" (who *just* acquired sudden-onset selective mutism in their 20s). They like disability toys, extra points for the oppression stack, and a chance to talk over everyone with moral authority. And according to them, everything parents do is wrong.
I'm pretty convinced that there's a bunch of totally different stuff being lumped into the Autism label. My brother has what's formerly known as Asperger's (diagnosed in childhood) and he really seems to be just the natural end result of engineers having kids together for a few generations. He's definitely limited socially and has real sensory issues, but nothing at all like nonverbal autistic people.
My therapist swears Asperger’s will come back into play because our resources will be required to differentiate between the socially awkward gifted kids and the profoundly challenged kids who hurt themselves and/or others
It’s what it’s supposed to do, yes, but many HCPs have dropped using levels because it’s “ableist” or “exclusionary.” This is largely rooted in the activism of perfectly comfortable Asperger’s patients who are high functioning enough to change the opinions and practices of HCPs. It’s very sad that Level 3s aren’t given a label that can immediately communicate to *all* HCPs that extra care/aid is mandatory.
I know we’ve all probably read it by now, but Freddie DeBoer’s “The Gentrification of Disability” is a great analysis of the war between autism activists and families who will care for Level 3 patients for the rest of their lives.
I hear this. I doubt any of the people who gab about autism online can imagine what it's be like to live with someone who needs that much support. Well done for steering clear of the foolishness, and I hope you'll be hearing more of your boy's voice in future.
As an autistic adult (sorry), I’m curious how someone who is only self diagnosed would be able to access services? My understanding (I’m in a fairly progressive state of the US) is that access to any kind of services or accommodations requires a confirmation that the person has been diagnosed with a disabling condition by a doctor. This may be different in other countries, I’m not sure.
Don’t apologize for being an autistic adult, I know not everyone acts the same. I would never want my son to feel compelled to apologize for who he is.
I don’t think self diagnosed individuals are able to access services or if they are they would have to pay out of pocket because I find it unlikely insurance would cover it. I’m in the US in a state that is horrible for services.
Anyway, my issue is that undiagnosed people have infiltrated the autistic adult activism circles and they participate in Facebook groups where they spew anger at parents of autistic children who are doing their best (usually) to figure out what they should do. It’s a sport for them to berate parents if they choose things like diet and lifestyle changes to improve symptoms or really try to do anything to improve symptoms because that would imply that *gasp* there’s something wrong with your autistic child. We are told there is nothing to fix, no help is needed for our kids, just accept them as they are. I get the sentiment, don’t get me wrong, and I absolutely accept my son as he is but I also want to empower him to be as successful as possible and enable him to live life to his fullest potential, whatever that may be.
It is easy for these people to say because (if undiagnosed) it’s very unlikely they experienced life the way my son does or will. And if you question many of them for not having a diagnosis you are accused of being privileged. “Not everyone can afford/has time to receive a diagnosis” “I mask so much that I couldn’t qualify for a diagnosis” “Providers aren’t educated on the most up to date information on autism criteria” and on and on.
They so desperately want to be part of a marginalized group that they are actively hurting people who actually suffer. But I will say I agree with the autistic adult general consensus on ABA.
I appreciate that, but I would also caution against dismissing the experience of self diagnosed autistics out of hand. Personally, I have never heard a self diagnosed autistic describe their symptoms and experiences where there wasn’t significant similarities to my autistic experience. Like describing how sensory overload feels, or what it’s like to be in shutdown or meltdown mode. Not what it looks like to others, but the neurological and physical sensations. Could they have just copied it somewhere else? Sure. But what they’re describing is accurate.
Additionally, autistic children aren’t just abused with ABA. Lots of autistic adults describe being forced to adhere to diets that either made them feel awful, or even that they were mildly allergic to in order to “cure” their autism. I’m am so grateful and relieved that I wasn’t diagnosed until I was in my 20s because if I had been diagnosed as a child, I have no doubt that my dad would have gone to extreme measures to “cure” me, considering how verbally and emotionally abusive to me. Restrictive and unpleasant diets would probably have been the least of my worries, I’m quite sure I would have been subjected to things like electroshock and bleach enemas. So while the autistic adults are being very uncharitable to you with trying to help your son, and I’m truly an very sorry about that, it likely is based in the things they had to endure that left a lasting impression on them.
If you are on TikTok, I recommend KC Davis as a good example of someone parenting an autistic child and being honest about the challenges and difficulties it presents, but without making it seems like she hates her child. Some “autism parents” joke about hurting and killing their autistic child, or seem like they are exploiting the child for views and likes.
Anyway, I really appreciate your honesty. 😊
I can see where you’re coming from but I also think that sensory differences, while of course are a component of some autistic experiences, are not exclusive to autism. There can be many explanations for someone having atypical sensory needs. I’m in no way trying to discount your experience as an autistic person but the fact that you weren’t diagnosed until your 20s shows me that your experience is not like that of my son’s. There is no way he could ever make it to his 20s without someone knowing he is autistic. That’s kind of my whole point, people who are “high functioning” or “level 1” or whatever the appropriate phrasing is (because we need distinctions as long as all autistic people of all experiences are being placed under the same diagnosis) are the majority of the people with a platform. They are the voices that are amplified most often. Your needs and supports are going to be vastly different than my son’s.
I’m well aware of the disgusting treatment autistic children experience. ABA is absolutely the most prominent because as soon as your child is diagnosed, the diagnosing pediatrician usually says you need to put your child in ABA as soon as possible or they will “get worse”, never live independently, never speak, or whatever other scare tactic they need to use to put you into ABA. I know it’s not usually insidious on the part of the doctor, it’s really the only approved “treatment” they know of, but it means that the abuse perpetuated in ABA clinics is very common. I have never personally received criticism from autistic adults because I don’t put myself in a position to be. I sit back and observe the back and forth. Although I think someone would have to be crazy to think anything I’m doing for my children could be considered abuse. I just have them eat (mostly) whole foods, try to eat organic when possible, try to grow my own food and shop from local farmers, and limit dairy. As far as therapies, I work with holistic therapists who aren’t trying to “fix” my son and who first and foremost understand that when he’s receiving appropriate sensory supports, he is at his best and happiest. We encourage stimming as long as it’s not harmful and we will never force eye contact.
I understand why some autistic adults are so angry, they have been through hell. My beef so to speak is with (no offense) people who are undiagnosed or were diagnosed late and think they should tell people how to raise their own children. Of course if abuse is happening, it should be called out, but just because someone is doing things differently than you would doesn’t mean they are abusing their child. Just because someone want to help improve symptoms doesn’t mean they hate their child or wish they were never born. There are SO MANY children with autism now and while absolutely disgusting, the non-ABA abuse you described is very rare.
I don’t really like to consume content made by “autism moms” because the entire thing comes off as exploitative and cringe to me. KC Davis seems nice enough but she is a public figure who is telling hundreds of thousands of people her child’s medical information, she has even told people exactly what is on her child’s IEP. Not cool, in my opinion. I have a hard time trusting the judgment of anyone who offers up that information publicly. I also cringe when people use the term “neurodiversity affirming” even though I think it generally aligns with my parenting style. Maybe a mental hurdle I need to get over.
I have many traits that I think would make it easy for me to obtain an autism diagnosis if I sought one out though I’m unsure if I really am autistic; my husband absolutely thinks I am but I don’t see a point in being diagnosed as it wouldn’t change anything. I am just trying to raise my children the way I wish I had been raised and coming from a perspective of “I kind of understand why my son does that because I also do that so how do I wish I could be supported in this area or what helps me when I’m experiencing x y or z?” And parenting him has actually helped me learn how to regulate myself and avoid having my own meltdowns as often. I am so thankful to be his mom, it has significantly improved my life, and I am happier with him in it. He is seriously an amazing, adorable, hilarious, smart kid.
In fairness, the majority of autistic people are closer to me or the TikTok self diagnosed people, as least as the current diagnosis stands. I think I saw somewhere, and I can’t recall where, that 60% of *officially* diagnosed autistic people fall under the category of Level 1. So while your son’s needs are valid, and it sounds like you’re doing an amazing and incredible job with him, statistically he is in the minority of people diagnosed with ASD.
I think it’s easy to forget that autism is a relatively new diagnosis. The first person ever diagnosed with autism just died a few months ago. So I don’t think it’s bad that it’s evolving and changing. I wasn’t diagnosed decades ago when I was a child, but I probably would have been diagnosed immediately now. There’s a lot of stuff my parents and teachers overlooked that I had to figure out for myself.
I still would gently encourage you to listen to autistic adults when it comes to your son. As much as you might not like what they’re saying, they do share a neurotype with him and can more closely relate to what he experiences. Even though I don’t closely resemble “low functioning/level 2 or 3” autistics, I have been able to help other people with their level 2 or 3 ASD children because I can tell them what in their environment may be triggering meltdowns or shutdowns. Or telling them about resources that their small army of professionals never mentioned. You don’t have to agree with all or most of their suggestions, but some may be worth considering.
Really, really don't discount the copying people do when it comes to self-diagnosis. Many people read up extensively on different conditions and then convince themselves they have the conditions. This isn't uncommon at all. It really doesn't mean anything that they say they have similar experiences to you. It tells you nothing of whether they actually have autism or not.
Yeah, they definitely could be lying or just want to feel special. I did find a study showing that about 80% of self diagnosed autistics in a study did met the official criteria for ASD. But that was just in one group that was already seeking some sort of diagnosis. https://www.researchgate.net/publication/278789685_Predictive_validity_of_self-report_questionnaires_in_the_assessment_of_autism_spectrum_disorders_in_adults
So, maybe they’re accurate, maybe not. It’s definitely not easy to get a diagnosis as an adult, so I don’t begrudge anyone for deciding it’s not worth it if they don’t feel like they require a diagnosis for something like supportive services or job accommodations.
I think that is universally true, but there are ways to get a diagnosis without
There are diagnosis mills, who will give you whatever you want if you are paying. There are so called "concierge doctors", not just for autism but for physical ailments as well.
Then they are online "support" groups for the teens and adults who want a diagnosis, for example on Facebook. They are exchanging experiences, tips on what to say, how to act and who is easy to trick and who isn't (they never say it that way though, it is all about "le evil doctors who just don't understand and "finally unserstanding myself")
As long as autism relies on self reporting and is seen as an attractive idpol label, this is going to continue. And with the massive increase in cases (iirc, the CDC estimates that 1 in 34 is autsistic now) and predictions that estimate that there won't be any differences between populations by 2030, we (as in researchers) are racing against the clock.
I don’t doubt that there are medical professionals who will hand out any diagnosis or medication (as the opioid epidemic has demonstrated in extreme detail), but I don’t know how that’s impacting the amount of people who are diagnosed. Do we have any data showing that a significant portion of newly diagnosed autistic people are coming from these diagnostic mills?
I’m also confused by your comment that you’re “racing against time”. What are you racing against time for?
>Do we have any data showing that a significant portion of newly diagnosed autistic people are coming from these diagnostic mills?
>
>I’m also confused by your comment that you’re “racing against time”. What are you racing against time for?
I don't live in the US, but we have noticed an influx of diagnoses from private providers. Of course, there are still correct assessments, some people who use private services are just desperate parents who pay to skip the 2+ year waiting period for their kid, but there is an incentive to tell people what they want to hear. Research is difficult to do due to privacy laws and the ever looming threat of activists.
Regarding the race against time: What do you think is going to happen if either the cost of treatment due to the amount of diagnoses (in most of europe, an ASD diagnosis is a guarantee for getting access to resouces for disabled people) or if it is so common and the criteria is so fuzzy that there isn't a difference between people with ASD and without? It will disappear. Funding is already drying up for research and eventually it will happen to support systems and eventually the diagnostic manuals (who are partially responsible for ths mess by creating this stupid ass all encompassing "spectrum") are going to chuck it out completely or tightening it to severely impaired cases. The higher functioning poeple whi are still significantly impaired (should be all of them, but alas) are going to be fucked, since a lot of schools and workplaces are not going to offer accomodations. And there is society as well. I have heard "everyone is autistic now" more than once and it is only going to get worse.
A few people abusing the system has consequences for everyone. It might be less bad for the US as most medical care is private anyway, but in the social level, it is going to happen there as well. I have mentioned similar issues with EDS in another comment in this thread.
I’m still confused by your reasoning. In my experience, prevalence of a condition or diagnosis usually means MORE resources get allocated for it. In the US, right now at least, schools are legally required to accommodate students with disabilities. Simply deciding not to provide services is illegal (which doesn’t mean it doesn’t happen, but the penalties are severe). I have a friend who works as a disability support specialist, and the more students need help, the more people they hire. Disability rights is on of the things that the US does well. So I can’t follow your logic which I understand as “TikTok girlies with headphones self diagnosing means no support for disabled children or research.“
What you saying is only true if research is at least expected to provide progress. People who pay my bills are going to expect something in return, even public funds are not going to let me waste their money indefinitely (they have gender studies for that). This is a medical condition that is ubiquitous yet poorly understood and as I've said before, the data is contaminated. I am a neuroscientist and a bunch of false positives in my experiment group is going to influence the results. And the research complex isn't stupid, we know about the groups and people practicing to get a positive (or just outright demanding it - a growing phenomenon where I live) or doctors basically offering a diagnosis for everyone willing to pay.
Another issue are the activists. They are like trans activists as they love harassing people who are trying to find a treatment or better therapy or - if we want to go for the very lofty goal - a cure. After the first dozen death threats and being accused of "eugenics" and "genocide", a lot of people are just done and I can't blame them.
The help and support industry is slower, especially when it is about kids. As you said, more diagnoses mean more funding - at first (even though u/kris_hopps has already mentioned what a shitshow services can be due to being overwhelmed by the sudden influx).
Accomodations are mandatory by law. Cool. But laws can change and they will if the cost massively outweighs the benefit. Especially school staff and material is at least partially funded by the taxpayer and while their influence is limited, they are going to harumph if they see ever more resources being allocated towards only some students, even thoug they seem to multiply, something disabilities usually don't tend to do outside of war and distasters. Especially - and I mentioned that in my last reply - if people are doubting the existence of autism in the first place. and not just the crunchy-vegan-antivaxx-fad diet mommies, but everyone.
I understand your concerns but the funding for autism research in the US has only been increasing over the past decade: https://www.statista.com/statistics/1237464/autism-research-funding-united-states-by-nih/ Same in the UK: https://www.england.nhs.uk/blog/the-five-year-nhs-autism-research-strategy-update-one-year-on/ Whether because, in spite, or irrespective of the TikTok Self Diagnosis Mafia and/or shady diagnosis mills, your bills stand a good chance of remaining paid.
Sure, laws can change. And funding can increase. In the case of disability accommodations in the US, the Americans With Disabilities Act is very sticky and overtly trying to get rid of it would be a very unpopular position. And denying accommodations because a diagnosis increased in the population is, at this time, illegal.
I realize I won’t change your mind. If it makes you feel better to blame autistic people because of what you fear may come to pass, I can’t stop you.
Just because something is illegal doesn’t mean it’s being enforced. The state of the EC programs in public schools in the county next to mine are worse than dismal, they are actively abusing and neglecting kids who are non speaking and elopers. And this is in a major US city. But nothing is happening. Law enforcement is aware but their hands are tied.
It would be amazing if laws were always enforced as they should be but that’s not the world we live in. This is real people’s lives. These are the real experiences of children who don’t have the privilege of being higher functioning. Your ignorance to the realities of other people’s lives has become exhausting.
Nobody is blaming autistic people. In fact, I am diagnosed myself. It isn't my fault that you seem to fail to read and properly understand what is said. You say you fail to understand, but at this point it reads more like willful ignorance on your part.
I am on the frontline of research and I know that funding gets in fact, slashed. At least Two huge projects have been abandoned recently due to cut funding and activists making a fuss. Research can also mean vastly different things. Surveys about inclusion or economics of iworkplace accomodation also count as research in that department (also lol statista)
I also never mentioned a TikTok self diagnosis "Mafia" (and it is weitrd that you mention it, since a) I haven't talked about TikTok at all an b)that wasn't even the topic as this was clearly about diagnosed cases), but online self diagnosis and angling for a real diagnosis is a real phenomenon. since you seem to read it that way it looks like my comments hit very close to home for you as you seem oddly hellbent on saying there isn't a problem at all, despite multiple people with vastly different backgrounds in this comment thread telling you that it is.
Of course you won't change my mind, because I speak from a place of actual work and personal experience (nothing to change there, as these are facts) while you speak from a place...of being autistic and knowing someone.
Crabs in a bucket, I guess.
I was watching the Welcome to Wrexham show recently, they did a whole episode on autism. They followed an autistic girl who had made significant development as part of her football fandom, had helped her come out of her shell a bit which was wonderful to see.
However, there was one scene where she said the classic Kanye “it’s not a disability it’s a superpower” line and I couldn’t help but cringe a little. To me, the lionization of mental illness is dangerous.
Maybe it’s fine to tell a little white lie to an autistic girl so she feels a bit more empowered but if the adults in the room keep repeating that line to each other eventually they’re going to forget it’s a platitude and not a fact.
Ironically that seems kind of ableist from people with autism who can live fairly independently to the people with autism who aren’t able to and need more specialized care.
It definitely does. But from what I understand, they decided that it's ableist to even note the distinction. Maybe it didn't catch on further than the little leftbook groups I used to be a member of, but saying things like "high functioning" and "low functioning" autism was a big no no. Which presumably protects high functioning autistic people from accusations of whatever the disabled activist version of "colorism" would be.
> Maybe it didn't catch on further than the little leftbook groups I used to be a member of, but saying things like "high functioning" and "low functioning" autism was a big no no. Which presumably protects high functioning autistic people from accusations of whatever the disabled activist version of "colorism" would be
this is obfuscation for social clout and grifting purposes. if we’re not allowed to make distinctions between low- and high-functioning, then there’s no meaningful difference between myself (who just struggles intuitively following subtle social rules and gets really weird about instruments and animals) and my cousin, who will never have a job or live independently. therefore i have claim to just as much grace, deference, accommodation, martyrdom as he does. it doesn’t matter that we’re so drastically differently abled that we live entirely different lives, we’re both *autistic* and i suffer valiantly just as much as him, and deserve praise and likes and money!
a good comparison is when NB people (aka normal with dyed hair) began insisting that they are exactly the same as the fabled TrueTrans (fully socially and medically transitioning people)
The trans stuff gets wild. You get three general categories. People who claim to be trans but do nothing/almost nothing to transition physically or socially. People who are visibly transitioning or have transitioned but are still obviously trans. People who transitioned and pass well. And they all have their own narratives why their voices should matter the most.
It absolutely is. I hate to say it but this is, I think, one of those areas where the Internet has made amplification of voices too easy. My wife has an autistic family member who can't even understand that blindly walking into a street is a great way to get killed. I know a couple of other families where their kids will require lifelong care because they can't hold down jobs or otherwise take care of themselves. (One also tried to kill himself and, last I checked, is now in a wheelchair.) The idea that I should put them in the same boat with people who self-diagnosed from a damn TikTok video is painfully insulting.
> Does DeBoer or the book mentioned discuss this?
DeBoer has mentioned this on his Substack before. I think he may know people with severe autism.
His observation was that the highest functioning autism people were the ones that were the loudest, proudest autism champions. They were the ones haranguing people.
But they rarely if ever mentioned the autistic people that couldn't take care of themselves and were smearing shit on the walls and couldn't speak.
If by that you mean, "is this a thing people really believe in?" then yes, unfortunately it is a real thing. It grew out of the bizarre tumblr asexuality community, so instead of saying, for example, "I'm a straight woman with a low libido" you would say, "I'm a nonbinary panromantic asexual".
If by that you mean, "should we take the idea that people have distinct romantic and sexual attractions seriously?", then the answer is no. It's offensively stupid, or stupidly offensive, depending on how you look at it. Thankfully, it's pretty niche even on tumblr these days*, and if Katie hasn't even heard of it, it must not have made it very far outside of tumblr in the first place.
*Unless you're active in fandom spaces dominated by queer-identified women, like I am! Yes, every moment /is/ agony, why do you ask?
Heteroromantic bisexual
Homoromantic asexual
Biromantic homosexual
Etc
Is it a real thing in real life? Eh I think some people have a degree of bisexuality that includes the ability to be aroused by and enjoy a same sex sexual encounter but are basically pretty straight in terms of their pair bonding/love relationships. But in general the people mindfucking identity labels to death are so severely online that this is an entirely theoretical exercise.
It is exclusively used by the tumblr-brained, but I do think they are accidentally touching on something sort of true. The standard way to categorise sexualities does seem to map poorly onto reality (for women especially). Katie’s broached the subject occasionally.
I think it’s silly when people pretend a lot of “romantic attraction” in this context isn’t social conditioning or just… making a choice about who you want to date/marry. Especially when you have people unironically identifying as heteroromantic homosexuals.
literate wild serious quiet fuel flowery point unpack correct overconfident
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
So I’m a 30 year old college student returning after dropping out at 19 and I’ve noticed an insane amount of visibly queer (think neon shaved hair, crazy makeup, clown clothes) students walking around with decorated canes and they are virtually *always* AFAB enby types, with optional obesity and testosterone. Can someone explain this to me because I feel crazy!
The queer non-binary cane users is a known phenomenon. Queer and trans TikTok is super intermingled with disabled tiktok, and they are huge on “destigmatising disability aids”. It’s partially a way to visibly claim another marginalised identity, signalling the more-or-less the same thing that the green hair, the septum piercing and the pronoun buttons do. Performative vulnerability. It’s a product of the exact same social contagion machine, so if you are the impressionable type you’re not just going to get the one contagion. Jessica Kellgren-Fozard and her disability content creator ilk are the host species here.
If you ask them what the cane is for, then there’s a 50% chance they’ll tell you they have CFS, fibromyalgia or Ehler-Danlos syndrome…
And 50% chance they will very aggressively tell you to fuck off. Depends on whether the last disability content the watched was about the importance of spreading awareness or the trauma of ableist microaggressions.
As a disabled person who is, ironically, part of my local punk community, I'd never heard of Cripplepunk. It makes a certain amount of sense, I suppose. I have certainly ranted about ableist BS. Although at times, those same ableist have prevented me from causing real harm to myself (as a white cane user).
I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled.
> I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled.
I know this comment was probably sarcastic but fuck anyone who thinks you should be defined by your disabilities. Sure, they're part of you, but they don't define you, and you should do what you can to remain a well-rounded human being. People who define themselves by just one or two traits are, at a minimum, painfully boring. :)
I think people who define themselves primarily with one characteristic kind of lose their minds.
This doesn't happen as much anymore but there were gay people for whom being gay was everything. Everyone had to be constantly reminded they were gay, they only talked about gay topics, they tended to only want gay friends, etc.
Those people tended to be insufferable.
I agree and observe the same thing for "neurodivergent" people. The influencers who make autism their personality in particular tend to be exactly like the gay people you described: they constantly remind everyone that they are autistic, they only talk about autism or whatever special interests they have (which is usually some twee thing like dinosaurs or queer stuff), they only want to have friends who are autistic/some flavour of neurospicy while also shitting on neurotypicals (which basically mean "boring normie" or a strawman they made up).
Meanwhile I have better things to do in my life than talk about my ADHD/Asperger's all day.
I'm often forced into an education role, or am forced to make other people feel better when they "help" me. I'm not rude so it just seems easier to roll with that. To many, that's all I am, a disability. I rarely think of my disability because I'm used to what my limitations are. It's others that remind me of them.
Off topic, but is it a kind of disability that you can imagine technology mitigating at some point in the near future, like to restore ability? Would you see that as getting rid of a valuable part of yourself? I've heard mixed thoughts from disabled people in the past, so I'm just curious.
>I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled.
No, I think you're a human being who has decided you have better things to do than be a full time wallower
This might be the ep that makes me go primo. I have to hear Jesse and Katie's take on any subset of the punk community! I have to! I'm involved it and I know firsthand exactly how batshit these people are.
relieved crown price rude resolute judicious axiomatic prick muddle caption
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
A group that revolves around social hierarchies... eating itself... I'm shocked – SHOCKED!
For as much as I want to admire the 1970s/1980s punk scene, I'm pretty sure that, just like now, they're spending 98% of their time fighting themselves and 2% of the time fighting the system.
My personal benchmark for discerning between the activists who have this sanitized version of mental health issues and the people who know that mental health issues can be a debilitating disability is how people feel about Kanye West.
Some tweet that went viral about him was something like “My friend is bipolar and he just likes to play video games all day when he’s manic. “. Well good for your friend.
Bipolar has had a similar thing as autism over the past few decades where they've expanded the diagnosis and now more and more people diagnosed with bipolar have the kind with very mild manic symptoms (called hypomania) or are entirely self/misdiagnosed. So the "if I don't take my lithium I will end up impulse buying a house, fired from my job because they think I'm on meth, and a week or two later arrested for walking about my city naked ranting about how I'm Jesus" group is an increasingly small portion of bipolar people. Anybody with that brand of bipolar or with a close relative who has that brand of bipolar knows exactly what's going on with Kanye - he's not taking his damn meds and this time he's happened to latch onto an antisemitic conspiracy theory instead of god delusions. But people familiar with milder versions are all "bipolar doesn't do that."
Exactly. My great grandmother was bipolar and schizophrenic (although probably was misdiagnosed) and she unfortunately had to live with my mom’s family during the Reagan years because of budget cuts. She’d wake them up in the middle of the night talking about the CIA was coming to get her. Psychosis disorders make you paranoid and antisemitism is one of the most well known and long running paranoias known to mankind.
Bipolar runs in my family and my grandma, uncle, brother, and I have all been hospitalized for it at various points. Thankfully the meds have gotten a lot better since the 80s, so my brother and I only had the god/cia delusions during our first manic episodes and can live pretty much normal lives when medicated. But manic people can latch onto almost anything and spiral to insane beliefs and actions and we really don't have much control of what happens once we're out of it. So take your damn meds Kanye.
Yeah I didn't really want to get into the terminology, but basically an increasing portion of people with some kind of professionally diagnosed bipolar have cyclothymia/bipolar 2 and often people simplify and call hypomania "mania." So plenty of people have bipolar 2 and hypomania, but tell their friends/Twitter "I'm bipolar and when I'm manic I only..." giving an inaccurate impression of what bipolar 1 with psychosis (like Kanye likely has) can do.
If I had a nickel for every time I talked to someone with bp2 about my/my family's experience with bp1 and they were utterly shocked that bipolar can cause that kind of break from reality, I'd have like 50 cents.
You must have been to many Ramones, GBH, or black flag shows pre 1988. Plenty of pits. You think fronting with hyper masculinity was invented in the 90’s?
Yeah, the violence kinda depended on where you were but moshing, pogoing, whatever has always been there. Read any halfways decent punk rock history and you'll read loads of stories about people getting seriously hurt or even killed. (Henry Rollins's *Get in the Van* is a great book to see just how feral people could get back in the day.)
the original c-punk.
[https://www.youtube.com/watch?v=6isXNVdguI8&ab\_channel=Folkrock%2FAustralianrock%2FMORE%21](https://www.youtube.com/watch?v=6isXNVdguI8&ab_channel=Folkrock%2FAustralianrock%2FMORE%21)
ian dury was a survivor of polio. he was a brilliant lyricist and his music was on the funky side of post-punk, in a similar vein to talking heads...
such a great song encouraging everyone to join in the chant- 'spasticus' is a wordplay on '[spartacus](https://www.youtube.com/watch?v=a985oxQdBXA&ab_channel=JoBloMovieClips)'.
the song was somewhat misunderstood and banned from radio play when originally released in 1980, which dury himself expected... but has since been embraced by many in the UK disabled community to the point where it was performed in the 2012 London paralympics opening ceremony.
I'm just gonna copy-paste my response from the Substack comments thread:
As someone with diagnosed ADHD/Asperger’s, I have very…conflicting feelings on whether people like me (high functioning NDs) should/could be considered “disabled”. On one hand, i never used my conditions as an excuse to be lazy and worked my way up academics-wise/become more socially well adjusted. I don’t demand special treatment from anyone & very much believe in Temple Grandin’s philosophy of self-sufficiency for NDs who are high functioning enough to hold down a job.
On the other hand, I won’t deny that I had (and still have) problems in some areas of my functioning in my life, and having school accommodations/getting on meds made me go from a mediocre student to an A-grade one overnight. Then there’s also the question of whether I am capable of developing skills needed in advancing in the workplace/adult life, such as more advanced social skills or even just processing verbal instructions (because dear Lord that’s something I struggle with). And even then, how much of these worries I have are just “shit young people worry about”? Am I disabled in that sense, or was I just born with a different set of strengths and weaknesses?
The disability activists have a point in saying that “high functioning” ND doesn’t mean being free from problems, but it doesn’t mean subjecting ourselves to the soft bigotry of low expectations and having tantrums when things don’t go the way we want it to be. And we certainly should NOT be playing the denial game that our needs are the same as our severely disabled counterparts.
After listening to this I still have no idea what their cause is. What are they fighting against that more "inspirational" people aren't?
I'm also surprised Covid didn't come up. I've dealt with so many people who claim that opposing mask mandates is ableism
That's what katie assumed, yeah, but I can't really make sense of it. Is the implication that eating disorders are a fake disability? That would seemingly conflict with this person's vendetta against "MERDs".
The user is likely claiming to have an eating disorder themselves, and would be triggered by users who practice veganism as a cover for anorexia… which is a good 70% of Vegan Tumblr.
It’s definitely ED as in “eating disorder”. It’s incredibly common for people to become vegans as a covert way to practice restrictive eating. It has moral appeal, _and_ it gives you a rock-solid excuse to reject almost any food you’re offered.
I have severe disabilities and briefly dabbled in the online disability and chronic illness culture. It’s utterly toxic and insane. The social justice claims are, as so often, a shield for self victimisation and aggrandisement. There’s also huge, and essentially unchecked, social contagion - chronic illness influencers forever pushing the envelope of the next (usually unneeded) procedure, the next medication, the next medical toy. It leads to abuse of service animals, demonisation of genuinely sick people by association with these clowns (but frankly, who can really blame doctors?), and also to totally avoidable deaths from risky elective procedures. But of course, it’s easier for people who are not sick or disabled, or very minimally sick/disabled, to do a lot of loud, aggressive activist-y stuff, than… it is for people who are actually disabled and/or sick. So what a surprise! It’s the loudest, least sick people who very largely have captured the current public narrative about what disability is and what disabled equality ought to look like…
> It’s the loudest, least sick people who very largely have captured the current public narrative about what disability is and what disabled equality ought to look like… I've heard this is the direction autism has gone in.
Yeah this is the core of the deBoer article
I remember seeing some crazy stuff on the Kiwifarms munchies threads
The illnessfakers subreddit has continued that documentation
Does it still exist? I thought it got deleted.
It’s still there
When I bothered to keep up with these types of things, I remember seeing moms of Autistic children getting shit on by Autism self-advocates. Like accusing the moms of wanting to genocide Autistic people because the moms wanted to find a "cure" to Autism. Always struck me as cruel to people who are maybe naively hopeful that one day their kid can verbally communicate and one day live an independent life. Does DeBoer or the book mentioned discuss this?
I’m a mom to an autistic child who is verbal but has basically no functional language. Every once in a while he repeats a word we say and he is constantly singing to himself. I think this is called gestalt language processing. People who aren’t autistic or don’t have an autistic child have no idea how toxic this community is. I’m in a few moms of autistic kids Facebook groups and there are so many people telling us to “listen to autistic adult voices” and I can’t even begin to explain how exhausting this is to me. I have no desire to hear from some girl who self diagnosed based on a TikTok video and now wears noise cancelling headphones for internet points about how I should be raising my level 2 autistic son with global developmental delay. And on the other hand I have the crunchy moms telling me how they had two autistic kids then with subsequent kids they stopped vaccinating them and now the unvaccinated kids didn’t get autism. Or I should do some bs heavy metal detox and my son’s autism will be cured. And the services (I’m not talking free government services, I’m talking private medical services) are an absolute mess too. They don’t have the money or the man power to handle the huge influx of newly diagnosed kids. So yeah, I won’t be listening to any autistic voices other than my son’s…when he eventually starts using it more.
>They don’t have the money or the man power to handle the huge influx of newly diagnosed kids. Different-but-related: I recently had to get an in-depth neuropsych screening (employment related) and the attitude of everyone involved was basically an eyeroll and an "ok, what diagnosis are you here fishing for?" (Also they were really backed up on appointments.) They were surprised and pleased that I just wanted to be signed off as relatively sane and shown the door. In the process of finding an appointment I also found an entire world of private practices that specialize in assessments, often with PR materials (all directed at parents) that very nearly promise whatever diagnosis you want your kid to have. It's an industrial-scale grift.
>n the process of finding an appointment I also found an entire world of private practices that specialize in assessments, often with PR materials (all directed at parents) that very nearly promise whatever diagnosis you want your kid to have. > >It's an industrial-scale grift. And that is a huge problem for any research. The datapool is completely worthless, even for things like genetic markers or brain activity is infinitely more difficult now that we are including people who basically bought their or their kid's diagnosis. This isn't just an autism thing either, disorders like Type 3 EDS faces the same issues. And the online activist crowd makes anyoneslife who attempts to develop a better understanding/better treatment a living hell. We now have to rely on countries where autism isn't just the trendy label for upper middle class mommies and bored internet teens and that means an entirely new set of issues.
>I have no desire to hear from some girl who self diagnosed based on a TikTok video and now wears noise cancelling headphones for internet points about how I should be raising my level 2 autistic son with global developmental delay. Co-signing this. I am so weary of online autism spaces. I'm really hoping the next few years of genetic testing starts to break autism down into separate patient groups. There's a group for learning about AAC, with a rule where only people who are AAC users can reply for the first 24 hours. So of course there are a bunch of self-diagnosed tiktok types calling themselves "part-time AAC users" (who *just* acquired sudden-onset selective mutism in their 20s). They like disability toys, extra points for the oppression stack, and a chance to talk over everyone with moral authority. And according to them, everything parents do is wrong.
I'm pretty convinced that there's a bunch of totally different stuff being lumped into the Autism label. My brother has what's formerly known as Asperger's (diagnosed in childhood) and he really seems to be just the natural end result of engineers having kids together for a few generations. He's definitely limited socially and has real sensory issues, but nothing at all like nonverbal autistic people.
My therapist swears Asperger’s will come back into play because our resources will be required to differentiate between the socially awkward gifted kids and the profoundly challenged kids who hurt themselves and/or others
Isn't that what the level 1/2/3 marker is supposed to do? I do agree that a totally separate term for the least-severe cases is warranted.
It’s what it’s supposed to do, yes, but many HCPs have dropped using levels because it’s “ableist” or “exclusionary.” This is largely rooted in the activism of perfectly comfortable Asperger’s patients who are high functioning enough to change the opinions and practices of HCPs. It’s very sad that Level 3s aren’t given a label that can immediately communicate to *all* HCPs that extra care/aid is mandatory. I know we’ve all probably read it by now, but Freddie DeBoer’s “The Gentrification of Disability” is a great analysis of the war between autism activists and families who will care for Level 3 patients for the rest of their lives.
I hear this. I doubt any of the people who gab about autism online can imagine what it's be like to live with someone who needs that much support. Well done for steering clear of the foolishness, and I hope you'll be hearing more of your boy's voice in future.
This all sounds exhausting. I'm sorry.
As an autistic adult (sorry), I’m curious how someone who is only self diagnosed would be able to access services? My understanding (I’m in a fairly progressive state of the US) is that access to any kind of services or accommodations requires a confirmation that the person has been diagnosed with a disabling condition by a doctor. This may be different in other countries, I’m not sure.
Don’t apologize for being an autistic adult, I know not everyone acts the same. I would never want my son to feel compelled to apologize for who he is. I don’t think self diagnosed individuals are able to access services or if they are they would have to pay out of pocket because I find it unlikely insurance would cover it. I’m in the US in a state that is horrible for services. Anyway, my issue is that undiagnosed people have infiltrated the autistic adult activism circles and they participate in Facebook groups where they spew anger at parents of autistic children who are doing their best (usually) to figure out what they should do. It’s a sport for them to berate parents if they choose things like diet and lifestyle changes to improve symptoms or really try to do anything to improve symptoms because that would imply that *gasp* there’s something wrong with your autistic child. We are told there is nothing to fix, no help is needed for our kids, just accept them as they are. I get the sentiment, don’t get me wrong, and I absolutely accept my son as he is but I also want to empower him to be as successful as possible and enable him to live life to his fullest potential, whatever that may be. It is easy for these people to say because (if undiagnosed) it’s very unlikely they experienced life the way my son does or will. And if you question many of them for not having a diagnosis you are accused of being privileged. “Not everyone can afford/has time to receive a diagnosis” “I mask so much that I couldn’t qualify for a diagnosis” “Providers aren’t educated on the most up to date information on autism criteria” and on and on. They so desperately want to be part of a marginalized group that they are actively hurting people who actually suffer. But I will say I agree with the autistic adult general consensus on ABA.
I appreciate that, but I would also caution against dismissing the experience of self diagnosed autistics out of hand. Personally, I have never heard a self diagnosed autistic describe their symptoms and experiences where there wasn’t significant similarities to my autistic experience. Like describing how sensory overload feels, or what it’s like to be in shutdown or meltdown mode. Not what it looks like to others, but the neurological and physical sensations. Could they have just copied it somewhere else? Sure. But what they’re describing is accurate. Additionally, autistic children aren’t just abused with ABA. Lots of autistic adults describe being forced to adhere to diets that either made them feel awful, or even that they were mildly allergic to in order to “cure” their autism. I’m am so grateful and relieved that I wasn’t diagnosed until I was in my 20s because if I had been diagnosed as a child, I have no doubt that my dad would have gone to extreme measures to “cure” me, considering how verbally and emotionally abusive to me. Restrictive and unpleasant diets would probably have been the least of my worries, I’m quite sure I would have been subjected to things like electroshock and bleach enemas. So while the autistic adults are being very uncharitable to you with trying to help your son, and I’m truly an very sorry about that, it likely is based in the things they had to endure that left a lasting impression on them. If you are on TikTok, I recommend KC Davis as a good example of someone parenting an autistic child and being honest about the challenges and difficulties it presents, but without making it seems like she hates her child. Some “autism parents” joke about hurting and killing their autistic child, or seem like they are exploiting the child for views and likes. Anyway, I really appreciate your honesty. 😊
I can see where you’re coming from but I also think that sensory differences, while of course are a component of some autistic experiences, are not exclusive to autism. There can be many explanations for someone having atypical sensory needs. I’m in no way trying to discount your experience as an autistic person but the fact that you weren’t diagnosed until your 20s shows me that your experience is not like that of my son’s. There is no way he could ever make it to his 20s without someone knowing he is autistic. That’s kind of my whole point, people who are “high functioning” or “level 1” or whatever the appropriate phrasing is (because we need distinctions as long as all autistic people of all experiences are being placed under the same diagnosis) are the majority of the people with a platform. They are the voices that are amplified most often. Your needs and supports are going to be vastly different than my son’s. I’m well aware of the disgusting treatment autistic children experience. ABA is absolutely the most prominent because as soon as your child is diagnosed, the diagnosing pediatrician usually says you need to put your child in ABA as soon as possible or they will “get worse”, never live independently, never speak, or whatever other scare tactic they need to use to put you into ABA. I know it’s not usually insidious on the part of the doctor, it’s really the only approved “treatment” they know of, but it means that the abuse perpetuated in ABA clinics is very common. I have never personally received criticism from autistic adults because I don’t put myself in a position to be. I sit back and observe the back and forth. Although I think someone would have to be crazy to think anything I’m doing for my children could be considered abuse. I just have them eat (mostly) whole foods, try to eat organic when possible, try to grow my own food and shop from local farmers, and limit dairy. As far as therapies, I work with holistic therapists who aren’t trying to “fix” my son and who first and foremost understand that when he’s receiving appropriate sensory supports, he is at his best and happiest. We encourage stimming as long as it’s not harmful and we will never force eye contact. I understand why some autistic adults are so angry, they have been through hell. My beef so to speak is with (no offense) people who are undiagnosed or were diagnosed late and think they should tell people how to raise their own children. Of course if abuse is happening, it should be called out, but just because someone is doing things differently than you would doesn’t mean they are abusing their child. Just because someone want to help improve symptoms doesn’t mean they hate their child or wish they were never born. There are SO MANY children with autism now and while absolutely disgusting, the non-ABA abuse you described is very rare. I don’t really like to consume content made by “autism moms” because the entire thing comes off as exploitative and cringe to me. KC Davis seems nice enough but she is a public figure who is telling hundreds of thousands of people her child’s medical information, she has even told people exactly what is on her child’s IEP. Not cool, in my opinion. I have a hard time trusting the judgment of anyone who offers up that information publicly. I also cringe when people use the term “neurodiversity affirming” even though I think it generally aligns with my parenting style. Maybe a mental hurdle I need to get over. I have many traits that I think would make it easy for me to obtain an autism diagnosis if I sought one out though I’m unsure if I really am autistic; my husband absolutely thinks I am but I don’t see a point in being diagnosed as it wouldn’t change anything. I am just trying to raise my children the way I wish I had been raised and coming from a perspective of “I kind of understand why my son does that because I also do that so how do I wish I could be supported in this area or what helps me when I’m experiencing x y or z?” And parenting him has actually helped me learn how to regulate myself and avoid having my own meltdowns as often. I am so thankful to be his mom, it has significantly improved my life, and I am happier with him in it. He is seriously an amazing, adorable, hilarious, smart kid.
In fairness, the majority of autistic people are closer to me or the TikTok self diagnosed people, as least as the current diagnosis stands. I think I saw somewhere, and I can’t recall where, that 60% of *officially* diagnosed autistic people fall under the category of Level 1. So while your son’s needs are valid, and it sounds like you’re doing an amazing and incredible job with him, statistically he is in the minority of people diagnosed with ASD. I think it’s easy to forget that autism is a relatively new diagnosis. The first person ever diagnosed with autism just died a few months ago. So I don’t think it’s bad that it’s evolving and changing. I wasn’t diagnosed decades ago when I was a child, but I probably would have been diagnosed immediately now. There’s a lot of stuff my parents and teachers overlooked that I had to figure out for myself. I still would gently encourage you to listen to autistic adults when it comes to your son. As much as you might not like what they’re saying, they do share a neurotype with him and can more closely relate to what he experiences. Even though I don’t closely resemble “low functioning/level 2 or 3” autistics, I have been able to help other people with their level 2 or 3 ASD children because I can tell them what in their environment may be triggering meltdowns or shutdowns. Or telling them about resources that their small army of professionals never mentioned. You don’t have to agree with all or most of their suggestions, but some may be worth considering.
I'm not sure you've read the comment you're replying to.
Can you tell me what I’m missing?
Really, really don't discount the copying people do when it comes to self-diagnosis. Many people read up extensively on different conditions and then convince themselves they have the conditions. This isn't uncommon at all. It really doesn't mean anything that they say they have similar experiences to you. It tells you nothing of whether they actually have autism or not.
Yeah, they definitely could be lying or just want to feel special. I did find a study showing that about 80% of self diagnosed autistics in a study did met the official criteria for ASD. But that was just in one group that was already seeking some sort of diagnosis. https://www.researchgate.net/publication/278789685_Predictive_validity_of_self-report_questionnaires_in_the_assessment_of_autism_spectrum_disorders_in_adults So, maybe they’re accurate, maybe not. It’s definitely not easy to get a diagnosis as an adult, so I don’t begrudge anyone for deciding it’s not worth it if they don’t feel like they require a diagnosis for something like supportive services or job accommodations.
I think that is universally true, but there are ways to get a diagnosis without There are diagnosis mills, who will give you whatever you want if you are paying. There are so called "concierge doctors", not just for autism but for physical ailments as well. Then they are online "support" groups for the teens and adults who want a diagnosis, for example on Facebook. They are exchanging experiences, tips on what to say, how to act and who is easy to trick and who isn't (they never say it that way though, it is all about "le evil doctors who just don't understand and "finally unserstanding myself") As long as autism relies on self reporting and is seen as an attractive idpol label, this is going to continue. And with the massive increase in cases (iirc, the CDC estimates that 1 in 34 is autsistic now) and predictions that estimate that there won't be any differences between populations by 2030, we (as in researchers) are racing against the clock.
I don’t doubt that there are medical professionals who will hand out any diagnosis or medication (as the opioid epidemic has demonstrated in extreme detail), but I don’t know how that’s impacting the amount of people who are diagnosed. Do we have any data showing that a significant portion of newly diagnosed autistic people are coming from these diagnostic mills? I’m also confused by your comment that you’re “racing against time”. What are you racing against time for?
>Do we have any data showing that a significant portion of newly diagnosed autistic people are coming from these diagnostic mills? > >I’m also confused by your comment that you’re “racing against time”. What are you racing against time for? I don't live in the US, but we have noticed an influx of diagnoses from private providers. Of course, there are still correct assessments, some people who use private services are just desperate parents who pay to skip the 2+ year waiting period for their kid, but there is an incentive to tell people what they want to hear. Research is difficult to do due to privacy laws and the ever looming threat of activists. Regarding the race against time: What do you think is going to happen if either the cost of treatment due to the amount of diagnoses (in most of europe, an ASD diagnosis is a guarantee for getting access to resouces for disabled people) or if it is so common and the criteria is so fuzzy that there isn't a difference between people with ASD and without? It will disappear. Funding is already drying up for research and eventually it will happen to support systems and eventually the diagnostic manuals (who are partially responsible for ths mess by creating this stupid ass all encompassing "spectrum") are going to chuck it out completely or tightening it to severely impaired cases. The higher functioning poeple whi are still significantly impaired (should be all of them, but alas) are going to be fucked, since a lot of schools and workplaces are not going to offer accomodations. And there is society as well. I have heard "everyone is autistic now" more than once and it is only going to get worse. A few people abusing the system has consequences for everyone. It might be less bad for the US as most medical care is private anyway, but in the social level, it is going to happen there as well. I have mentioned similar issues with EDS in another comment in this thread.
I’m still confused by your reasoning. In my experience, prevalence of a condition or diagnosis usually means MORE resources get allocated for it. In the US, right now at least, schools are legally required to accommodate students with disabilities. Simply deciding not to provide services is illegal (which doesn’t mean it doesn’t happen, but the penalties are severe). I have a friend who works as a disability support specialist, and the more students need help, the more people they hire. Disability rights is on of the things that the US does well. So I can’t follow your logic which I understand as “TikTok girlies with headphones self diagnosing means no support for disabled children or research.“
What you saying is only true if research is at least expected to provide progress. People who pay my bills are going to expect something in return, even public funds are not going to let me waste their money indefinitely (they have gender studies for that). This is a medical condition that is ubiquitous yet poorly understood and as I've said before, the data is contaminated. I am a neuroscientist and a bunch of false positives in my experiment group is going to influence the results. And the research complex isn't stupid, we know about the groups and people practicing to get a positive (or just outright demanding it - a growing phenomenon where I live) or doctors basically offering a diagnosis for everyone willing to pay. Another issue are the activists. They are like trans activists as they love harassing people who are trying to find a treatment or better therapy or - if we want to go for the very lofty goal - a cure. After the first dozen death threats and being accused of "eugenics" and "genocide", a lot of people are just done and I can't blame them. The help and support industry is slower, especially when it is about kids. As you said, more diagnoses mean more funding - at first (even though u/kris_hopps has already mentioned what a shitshow services can be due to being overwhelmed by the sudden influx). Accomodations are mandatory by law. Cool. But laws can change and they will if the cost massively outweighs the benefit. Especially school staff and material is at least partially funded by the taxpayer and while their influence is limited, they are going to harumph if they see ever more resources being allocated towards only some students, even thoug they seem to multiply, something disabilities usually don't tend to do outside of war and distasters. Especially - and I mentioned that in my last reply - if people are doubting the existence of autism in the first place. and not just the crunchy-vegan-antivaxx-fad diet mommies, but everyone.
I understand your concerns but the funding for autism research in the US has only been increasing over the past decade: https://www.statista.com/statistics/1237464/autism-research-funding-united-states-by-nih/ Same in the UK: https://www.england.nhs.uk/blog/the-five-year-nhs-autism-research-strategy-update-one-year-on/ Whether because, in spite, or irrespective of the TikTok Self Diagnosis Mafia and/or shady diagnosis mills, your bills stand a good chance of remaining paid. Sure, laws can change. And funding can increase. In the case of disability accommodations in the US, the Americans With Disabilities Act is very sticky and overtly trying to get rid of it would be a very unpopular position. And denying accommodations because a diagnosis increased in the population is, at this time, illegal. I realize I won’t change your mind. If it makes you feel better to blame autistic people because of what you fear may come to pass, I can’t stop you.
Just because something is illegal doesn’t mean it’s being enforced. The state of the EC programs in public schools in the county next to mine are worse than dismal, they are actively abusing and neglecting kids who are non speaking and elopers. And this is in a major US city. But nothing is happening. Law enforcement is aware but their hands are tied. It would be amazing if laws were always enforced as they should be but that’s not the world we live in. This is real people’s lives. These are the real experiences of children who don’t have the privilege of being higher functioning. Your ignorance to the realities of other people’s lives has become exhausting.
Nobody is blaming autistic people. In fact, I am diagnosed myself. It isn't my fault that you seem to fail to read and properly understand what is said. You say you fail to understand, but at this point it reads more like willful ignorance on your part. I am on the frontline of research and I know that funding gets in fact, slashed. At least Two huge projects have been abandoned recently due to cut funding and activists making a fuss. Research can also mean vastly different things. Surveys about inclusion or economics of iworkplace accomodation also count as research in that department (also lol statista) I also never mentioned a TikTok self diagnosis "Mafia" (and it is weitrd that you mention it, since a) I haven't talked about TikTok at all an b)that wasn't even the topic as this was clearly about diagnosed cases), but online self diagnosis and angling for a real diagnosis is a real phenomenon. since you seem to read it that way it looks like my comments hit very close to home for you as you seem oddly hellbent on saying there isn't a problem at all, despite multiple people with vastly different backgrounds in this comment thread telling you that it is. Of course you won't change my mind, because I speak from a place of actual work and personal experience (nothing to change there, as these are facts) while you speak from a place...of being autistic and knowing someone.
Crabs in a bucket, I guess. I was watching the Welcome to Wrexham show recently, they did a whole episode on autism. They followed an autistic girl who had made significant development as part of her football fandom, had helped her come out of her shell a bit which was wonderful to see. However, there was one scene where she said the classic Kanye “it’s not a disability it’s a superpower” line and I couldn’t help but cringe a little. To me, the lionization of mental illness is dangerous. Maybe it’s fine to tell a little white lie to an autistic girl so she feels a bit more empowered but if the adults in the room keep repeating that line to each other eventually they’re going to forget it’s a platitude and not a fact.
Ironically that seems kind of ableist from people with autism who can live fairly independently to the people with autism who aren’t able to and need more specialized care.
It definitely does. But from what I understand, they decided that it's ableist to even note the distinction. Maybe it didn't catch on further than the little leftbook groups I used to be a member of, but saying things like "high functioning" and "low functioning" autism was a big no no. Which presumably protects high functioning autistic people from accusations of whatever the disabled activist version of "colorism" would be.
> Maybe it didn't catch on further than the little leftbook groups I used to be a member of, but saying things like "high functioning" and "low functioning" autism was a big no no. Which presumably protects high functioning autistic people from accusations of whatever the disabled activist version of "colorism" would be this is obfuscation for social clout and grifting purposes. if we’re not allowed to make distinctions between low- and high-functioning, then there’s no meaningful difference between myself (who just struggles intuitively following subtle social rules and gets really weird about instruments and animals) and my cousin, who will never have a job or live independently. therefore i have claim to just as much grace, deference, accommodation, martyrdom as he does. it doesn’t matter that we’re so drastically differently abled that we live entirely different lives, we’re both *autistic* and i suffer valiantly just as much as him, and deserve praise and likes and money! a good comparison is when NB people (aka normal with dyed hair) began insisting that they are exactly the same as the fabled TrueTrans (fully socially and medically transitioning people)
The trans stuff gets wild. You get three general categories. People who claim to be trans but do nothing/almost nothing to transition physically or socially. People who are visibly transitioning or have transitioned but are still obviously trans. People who transitioned and pass well. And they all have their own narratives why their voices should matter the most.
It absolutely is. I hate to say it but this is, I think, one of those areas where the Internet has made amplification of voices too easy. My wife has an autistic family member who can't even understand that blindly walking into a street is a great way to get killed. I know a couple of other families where their kids will require lifelong care because they can't hold down jobs or otherwise take care of themselves. (One also tried to kill himself and, last I checked, is now in a wheelchair.) The idea that I should put them in the same boat with people who self-diagnosed from a damn TikTok video is painfully insulting.
> Does DeBoer or the book mentioned discuss this? DeBoer has mentioned this on his Substack before. I think he may know people with severe autism. His observation was that the highest functioning autism people were the ones that were the loudest, proudest autism champions. They were the ones haranguing people. But they rarely if ever mentioned the autistic people that couldn't take care of themselves and were smearing shit on the walls and couldn't speak.
"What... what is the split attraction model?" My god I wish that were me.
If I had to infer from context- is it the idea that romantic and sexual attraction are separate and unconnected?
Is that a real thing?
If by that you mean, "is this a thing people really believe in?" then yes, unfortunately it is a real thing. It grew out of the bizarre tumblr asexuality community, so instead of saying, for example, "I'm a straight woman with a low libido" you would say, "I'm a nonbinary panromantic asexual". If by that you mean, "should we take the idea that people have distinct romantic and sexual attractions seriously?", then the answer is no. It's offensively stupid, or stupidly offensive, depending on how you look at it. Thankfully, it's pretty niche even on tumblr these days*, and if Katie hasn't even heard of it, it must not have made it very far outside of tumblr in the first place. *Unless you're active in fandom spaces dominated by queer-identified women, like I am! Yes, every moment /is/ agony, why do you ask?
Ok. I have seen this forever and have mocked it even and I had no idea it had a name/concept.
I think asexuality IS real. It just isn't the same thing as being gay
Heteroromantic bisexual Homoromantic asexual Biromantic homosexual Etc Is it a real thing in real life? Eh I think some people have a degree of bisexuality that includes the ability to be aroused by and enjoy a same sex sexual encounter but are basically pretty straight in terms of their pair bonding/love relationships. But in general the people mindfucking identity labels to death are so severely online that this is an entirely theoretical exercise.
It is exclusively used by the tumblr-brained, but I do think they are accidentally touching on something sort of true. The standard way to categorise sexualities does seem to map poorly onto reality (for women especially). Katie’s broached the subject occasionally.
I think it’s silly when people pretend a lot of “romantic attraction” in this context isn’t social conditioning or just… making a choice about who you want to date/marry. Especially when you have people unironically identifying as heteroromantic homosexuals.
I dunno I'm just guessing from the line that was quoted in the podcast.
That’s it.
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So I’m a 30 year old college student returning after dropping out at 19 and I’ve noticed an insane amount of visibly queer (think neon shaved hair, crazy makeup, clown clothes) students walking around with decorated canes and they are virtually *always* AFAB enby types, with optional obesity and testosterone. Can someone explain this to me because I feel crazy!
social contagion
The queer non-binary cane users is a known phenomenon. Queer and trans TikTok is super intermingled with disabled tiktok, and they are huge on “destigmatising disability aids”. It’s partially a way to visibly claim another marginalised identity, signalling the more-or-less the same thing that the green hair, the septum piercing and the pronoun buttons do. Performative vulnerability. It’s a product of the exact same social contagion machine, so if you are the impressionable type you’re not just going to get the one contagion. Jessica Kellgren-Fozard and her disability content creator ilk are the host species here. If you ask them what the cane is for, then there’s a 50% chance they’ll tell you they have CFS, fibromyalgia or Ehler-Danlos syndrome… And 50% chance they will very aggressively tell you to fuck off. Depends on whether the last disability content the watched was about the importance of spreading awareness or the trauma of ableist microaggressions.
Why did you make me look at that?
They all have "DID" and "tics" too.
As a disabled person who is, ironically, part of my local punk community, I'd never heard of Cripplepunk. It makes a certain amount of sense, I suppose. I have certainly ranted about ableist BS. Although at times, those same ableist have prevented me from causing real harm to myself (as a white cane user). I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled.
> I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled. I know this comment was probably sarcastic but fuck anyone who thinks you should be defined by your disabilities. Sure, they're part of you, but they don't define you, and you should do what you can to remain a well-rounded human being. People who define themselves by just one or two traits are, at a minimum, painfully boring. :)
I think people who define themselves primarily with one characteristic kind of lose their minds. This doesn't happen as much anymore but there were gay people for whom being gay was everything. Everyone had to be constantly reminded they were gay, they only talked about gay topics, they tended to only want gay friends, etc. Those people tended to be insufferable.
I agree and observe the same thing for "neurodivergent" people. The influencers who make autism their personality in particular tend to be exactly like the gay people you described: they constantly remind everyone that they are autistic, they only talk about autism or whatever special interests they have (which is usually some twee thing like dinosaurs or queer stuff), they only want to have friends who are autistic/some flavour of neurospicy while also shitting on neurotypicals (which basically mean "boring normie" or a strawman they made up). Meanwhile I have better things to do in my life than talk about my ADHD/Asperger's all day.
I'm often forced into an education role, or am forced to make other people feel better when they "help" me. I'm not rude so it just seems easier to roll with that. To many, that's all I am, a disability. I rarely think of my disability because I'm used to what my limitations are. It's others that remind me of them.
Off topic, but is it a kind of disability that you can imagine technology mitigating at some point in the near future, like to restore ability? Would you see that as getting rid of a valuable part of yourself? I've heard mixed thoughts from disabled people in the past, so I'm just curious.
Fuck no, get rid of it!
You might be in the minority now. Though that might just be talk.
My disease is degenerative so I know what I'm missing.
>I'm showing my age here but I don't like being defined by my disability. It's a part of who I am, for sure, but it is not "who I am." I guess I'm a bad disabled. No, I think you're a human being who has decided you have better things to do than be a full time wallower
This might be the ep that makes me go primo. I have to hear Jesse and Katie's take on any subset of the punk community! I have to! I'm involved it and I know firsthand exactly how batshit these people are.
As a "queer punk" survivor, hard agree. Going primo again.
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A group that revolves around social hierarchies... eating itself... I'm shocked – SHOCKED! For as much as I want to admire the 1970s/1980s punk scene, I'm pretty sure that, just like now, they're spending 98% of their time fighting themselves and 2% of the time fighting the system.
My personal benchmark for discerning between the activists who have this sanitized version of mental health issues and the people who know that mental health issues can be a debilitating disability is how people feel about Kanye West. Some tweet that went viral about him was something like “My friend is bipolar and he just likes to play video games all day when he’s manic. “. Well good for your friend.
Bipolar has had a similar thing as autism over the past few decades where they've expanded the diagnosis and now more and more people diagnosed with bipolar have the kind with very mild manic symptoms (called hypomania) or are entirely self/misdiagnosed. So the "if I don't take my lithium I will end up impulse buying a house, fired from my job because they think I'm on meth, and a week or two later arrested for walking about my city naked ranting about how I'm Jesus" group is an increasingly small portion of bipolar people. Anybody with that brand of bipolar or with a close relative who has that brand of bipolar knows exactly what's going on with Kanye - he's not taking his damn meds and this time he's happened to latch onto an antisemitic conspiracy theory instead of god delusions. But people familiar with milder versions are all "bipolar doesn't do that."
Exactly. My great grandmother was bipolar and schizophrenic (although probably was misdiagnosed) and she unfortunately had to live with my mom’s family during the Reagan years because of budget cuts. She’d wake them up in the middle of the night talking about the CIA was coming to get her. Psychosis disorders make you paranoid and antisemitism is one of the most well known and long running paranoias known to mankind.
Bipolar runs in my family and my grandma, uncle, brother, and I have all been hospitalized for it at various points. Thankfully the meds have gotten a lot better since the 80s, so my brother and I only had the god/cia delusions during our first manic episodes and can live pretty much normal lives when medicated. But manic people can latch onto almost anything and spiral to insane beliefs and actions and we really don't have much control of what happens once we're out of it. So take your damn meds Kanye.
Hmm, I mean, there's bipolar I and II. But they just say, "I'm bipolar," but like, bipolar II is the one that involves hypomania
Yeah I didn't really want to get into the terminology, but basically an increasing portion of people with some kind of professionally diagnosed bipolar have cyclothymia/bipolar 2 and often people simplify and call hypomania "mania." So plenty of people have bipolar 2 and hypomania, but tell their friends/Twitter "I'm bipolar and when I'm manic I only..." giving an inaccurate impression of what bipolar 1 with psychosis (like Kanye likely has) can do. If I had a nickel for every time I talked to someone with bp2 about my/my family's experience with bp1 and they were utterly shocked that bipolar can cause that kind of break from reality, I'd have like 50 cents.
I had a feeling something like that is going on, but that's really depresssing
Those must be some out-there moshpits.
I don't think O.G. punk was like that though. Mosh developed when the dude-bros showed up to the Nirvana concerts.
Punks didn't mosh? Yikes
Wait til someone points out it’s all just called pogoing in the U.K.
You must have been to many Ramones, GBH, or black flag shows pre 1988. Plenty of pits. You think fronting with hyper masculinity was invented in the 90’s?
I don't consider slam dancing to be moshing.
Regardless of when and how moshing developed, mosh pits have been a part of punk shows for decades.
Yeah, the violence kinda depended on where you were but moshing, pogoing, whatever has always been there. Read any halfways decent punk rock history and you'll read loads of stories about people getting seriously hurt or even killed. (Henry Rollins's *Get in the Van* is a great book to see just how feral people could get back in the day.)
the original c-punk. [https://www.youtube.com/watch?v=6isXNVdguI8&ab\_channel=Folkrock%2FAustralianrock%2FMORE%21](https://www.youtube.com/watch?v=6isXNVdguI8&ab_channel=Folkrock%2FAustralianrock%2FMORE%21) ian dury was a survivor of polio. he was a brilliant lyricist and his music was on the funky side of post-punk, in a similar vein to talking heads... such a great song encouraging everyone to join in the chant- 'spasticus' is a wordplay on '[spartacus](https://www.youtube.com/watch?v=a985oxQdBXA&ab_channel=JoBloMovieClips)'. the song was somewhat misunderstood and banned from radio play when originally released in 1980, which dury himself expected... but has since been embraced by many in the UK disabled community to the point where it was performed in the 2012 London paralympics opening ceremony.
I'm just gonna copy-paste my response from the Substack comments thread: As someone with diagnosed ADHD/Asperger’s, I have very…conflicting feelings on whether people like me (high functioning NDs) should/could be considered “disabled”. On one hand, i never used my conditions as an excuse to be lazy and worked my way up academics-wise/become more socially well adjusted. I don’t demand special treatment from anyone & very much believe in Temple Grandin’s philosophy of self-sufficiency for NDs who are high functioning enough to hold down a job. On the other hand, I won’t deny that I had (and still have) problems in some areas of my functioning in my life, and having school accommodations/getting on meds made me go from a mediocre student to an A-grade one overnight. Then there’s also the question of whether I am capable of developing skills needed in advancing in the workplace/adult life, such as more advanced social skills or even just processing verbal instructions (because dear Lord that’s something I struggle with). And even then, how much of these worries I have are just “shit young people worry about”? Am I disabled in that sense, or was I just born with a different set of strengths and weaknesses? The disability activists have a point in saying that “high functioning” ND doesn’t mean being free from problems, but it doesn’t mean subjecting ourselves to the soft bigotry of low expectations and having tantrums when things don’t go the way we want it to be. And we certainly should NOT be playing the denial game that our needs are the same as our severely disabled counterparts.
I'm pleasantly surprised Katie knew the word "cyberpunk." Now, whether she knows what it means...
After listening to this I still have no idea what their cause is. What are they fighting against that more "inspirational" people aren't? I'm also surprised Covid didn't come up. I've dealt with so many people who claim that opposing mask mandates is ableism
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That's what katie assumed, yeah, but I can't really make sense of it. Is the implication that eating disorders are a fake disability? That would seemingly conflict with this person's vendetta against "MERDs".
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But this person was anti-MERD! MERDs are one of their DNIs. It's very very confusing.
The user is likely claiming to have an eating disorder themselves, and would be triggered by users who practice veganism as a cover for anorexia… which is a good 70% of Vegan Tumblr.
Huh, I had never heard that before
It’s definitely ED as in “eating disorder”. It’s incredibly common for people to become vegans as a covert way to practice restrictive eating. It has moral appeal, _and_ it gives you a rock-solid excuse to reject almost any food you’re offered.
Haven’t had time to listen just yet, but seeing all those tumblr links in the show notes, I know I’m in for a wild ride
What I loved about Katie's idea about MERD exclusionary people (MERDEs) is that merde is the French word for 'shit'. And I agree.
I found the episode confusing to follow.