As harmful autism disinformation campaigns go, grievance parents‘ attempt to break off “profound autism” as a separate diagnosis via smearing neurodiversity advocates is notable—mostly for its spitefulness. While we’ve previously analyzed how fact-free and twisted these “profound autism” arguments are, and talked with concerned researchers about how a separate “profound” diagnosis would be a disservice to any autistic person saddled with that label, we also know that many people prefer to get their information via video.
For that, we defer to Ember Green, an autistic YouTuber with an extensively researched episode debunking “profound autism” proponents and their propaganda. Green kindly gave us permission to feature the video here at TPGA. A full transcript lies below the video.
Please enjoy, share, and use this information to counter any anti-neurodiversity, pro-“profound autism” wrongheadedness you may encounter.
[image: Screenshot from Ember’s video. The background is a collage of anti-neurodiversity people including RFK Jr., orgs, and graphics. In the center is Green, a white person with steely teal-colored bobbed hair. Large overlaid text reads, “It’s nonsense!”]
TRANSCRIPT
This is something of an unplanned and unscripted video, because I was researching for another video on that RFK Junior Fellow over in the United States, and as I was researching for that, I read an article which made me want to walk into the sea. So now I’m going to make you suffer, too.
I tried.
I did try. I tried to make this a quick, unscripted response video, because [sarcasm] I’ve been so successful at that in the past.
But as they say, lies get around the world before the truth has its shoes on, and an eight-minute-read article full of questionable claims can be squeezed out in a day or two. But analysing and countering it can take several weeks and a YouTube video which is much longer than it should be. And this subject is about some of the most vulnerable members of our society, some of the most vulnerable people in the world. This is about their rights, their dignity and autonomy. I can’t just be quipping about that without putting some serious thought in. It’s too important.
Especially not now. It’s too critical. So instead of doing a few voiceover bits about the research that I managed to do, sort of debunking a few claims and then splicing that into the reaction which was my original plan, I think I’d rather explore why this matters so much to me, to the wider neurodiversity movement, to autistic people with very high care needs and the wider disability rights movement in general.
And I want to talk about and to parents. Parents of autistic kids who might be getting manipulated by very persuasive arguments into fearing and distrusting a movement which is actually there to help.
I will debunk, but this is about more than debunking. This is about more than cherry-picked numbers and fear-mongering. This is about the future of autism care, the way we view our disabled community members and importantly who gets to speak.
The reason why I stumbled across this article is because I was looking into a report that RFK was citing, and all the studies and stuff that he was claiming supported his views, and I noticed this one study that he claims supports his argument—and I was surprised to see that one of the listed authors was Alison Singer. Alison Singer, of course, of Autism Every Day fame.
So who is Alison, and why does the mention of her name get me so wound up?
From her Wikipedia page, Alison Singer is the president and founder of the Autism Science Foundation, a non-profit organization primarily focused on funding and advocating for medical research related to autism. She has also served on the Interagency Autism Coordinating Committee, a US federal advisory panel within the Department of Health and Human Services which coordinates all efforts within the HHS concerning ASD.
Singer held multiple leadership roles at controversial non-profit organization Autism Speaks between 2005 and 2009. So she’s got some fingers in some pies, then. This is not a person who is coming across as like powerless or silenced or anything like that.
I will say though that this Wikipedia entry, I kind of suspect that it’s seen a fair amount of autistic editing based on the number of citations against a report that she was a part of, but the National Council on Severe Autism (NCSA)—of which Singer is a [board] member—tells us all about how the committee that she was on is in charge with writing an annual strategic plan to guide federal spending for autism research.
So that must be nice.
Alison gained a lot of praise for not being anti-vaxx, and for quitting Autism Speaks for pursuing research to that end. “A voice for science,” she was called. By Nature no less.
(Just to be clear, Alison is not a scientist, nor does she have a background in science. Her qualification is in business admin.)
By the way though, the president of the [NCSA] organization that [Alison] is a member of—Jill Escher—she thinks that autism is an epidemic which has been caused by something in the environment. She calls the neurodiversity movement the “neuro-mob” and likes to spend her time disparaging autistic self-advocates on YouTube and [having the NCSA website] promote electroconvulsive therapy for autistic children. Something which is not approved by the FDA, and is outright banned in many places.
All these voices for science. Science is so lucky.
If you’ve heard of Alison it might be because you’ve seen a clip from a short film called Autism Every Day in which she discusses a moment when she felt desperate enough to drive her car off a bridge with herself and her autistic daughter inside it. I’ve spoken about this before because it upsets me a great deal.
Alison has responded to the criticism saying that if she made the film again, she would try to be clearer in what she meant saying, “I certainly did not mean to offend anyone or suggest that Jodie’s life or anyone else’s was not valued.”
She said she was describing the level of desperation that is out there, and the thing is she’s right to do that. Families of autistic kids are desperate for support. Desperate to not have to place their kids into unsafe or abusive environments because sometimes those are the only services on offer. Alison was talking about a day when she’d been to view a possible school for her daughter, and it was seeing the state of that place that pushed her to her limit.
The reason why that clip upsets me so very much is not because it’s a mother describing a brief fleeting moment of hitting rock bottom, of having a thought that probably made her feel like the worst person to ever exist—something that unfortunately happens when people are driven to the point of desperation. No, I can actually empathize with that.
I was so upset because she articulated this so casually right in front of her young daughter, entirely in the assumption that [her daughter] did not understand what was being said, and I don’t claim to know what Jodie did or did not understand.
But to broadcast this as a part of autism advocacy, parents talking so candidly right in front of their very young children, children who by the way, might be taking things a little bit more literally than their parents intend, it normalizes the idea that autistic kids just aren’t listening, don’t understand. That just because they aren’t looking at you or responding in a typical manner, that that means they aren’t comprehending.
[Autistic writer and advocate Jordyn Zimmerman speaking via AAC]
“It’s difficult to explain the intense emotions of what it was like before I had effective communication. I was really unhappy. I was restrained on a daily basis for years. The teachers would set timers, get off of me when the law mandated it, and then resume restraining me. I repeatedly went home with bruises and other injuries, but was unable to share about the trauma I was enduring.”
“My family has been very supportive, especially my mom. At the same time, she was repeatedly told that I would not be successful with AAC at the time. There was such a focus on my behaviors that it was almost a prerequisite in a way which just shouldn’t be.”
“I surprised everyone when I started typing. Presume competence.”
“Unfortunately, systems are focused on deficits rather than strengths. This commonly sets people up for failure, as everything is based on their perceived level of intelligence or disability. However, everyone is capable of doing amazing things.”
[Various non-speaking people use devices to speak in an excerpt from Communication First’s short film Listen]
“We’re all autistic and we are unable to rely on speech to be understood. Most of us are non-speaking. Some of us can speak a little, or from time to time.”
“People have a lot to say about us. They write stories and biographies. They produce plays and make movies about us, but they are not listening to us.”
“Just because I cannot speak does not mean I don’t hear. I hear everything people say to me or about me. I may not show understanding in my face, but I know and understand.”
“If you always leave us out, people think we are not able to participate. To anyone who wishes to represent non-speaking people, I ask that you communicate with us directly. Misrepresentation of non-speaking people leaves us more vulnerable to abuse.”
“I should not be left out of conversations or presumed incompetent, simply because I don’t rely on spoken language. There needs to be more representation of diverse autistic identities.”
“When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem. If your story says there’s no hope, people may not realize how many of us can share solutions about how to support non-speaking children and adults. To be treated like a child just because you can’t communicate in the usual ways is humiliating and traumatic. The way to demean me is to speak to me as if I am a baby. I don’t like people talking about me like I am not there.”
[Green resumes]
I stumbled upon an article that [Singer] wrote a few years ago for The Transmitter, and I think this article really kind of gets to something that is at the center of this whole war on autism thing, this whole anti-neurodiversity movement, and so I’d like to read it to you. If my blood’s boiling, then so should yours be.
The article is called “It’s Time to Embrace Profound Autism.”
[Singer]
“My experience at the Autism Europe International Congress, and as a parent of a child with profound autism, makes me more convinced than ever that we need to bifurcate the diagnosis of autism spectrum disorder and add a new diagnosis of profound autism to better serve this vulnerable population.”
[Green resumes]
Here’s the thing. The diagnosis of autism spectrum disorder is already bifurcated. Tri-ficated? It’s split up. We’ll see if she ever mentions that. Because it is. Autism spectrum disorder is the umbrella term for autism, but when you get your diagnostic report, there’s a number at the end of the ASD, and that number signifies what your level of support needs are.
[Singer continues]
“Earlier this month, I attended the Autism Europe International Congress in Krakow, Poland, where the theme was ‘Happy Journey Through Life.’ Although this sounds like an admirable goal. I would not choose the word ‘happy’ to describe my daughter Jodie’s life with profound autism. Nor would many other families who struggle with the day-to-day challenges of life on the profound end of the spectrum, a reality that is largely invisible to mainstream society.”
[Green resumes]
Okay, well, if your daughter’s not happy, then surely you’ve got no problem with people coming together and discussing ways to make autistic people happy? That would be my first thought.
Also, the “profound end of the spectrum,” we all know now that that is not how the spectrum works. It’s not a linear thing from a bit autistic to very autistic. That’s not it. The current conception of the autism spectrum looks like a spiky sphere, because let’s face it, that looks a lot cooler than that.
But also because it does a much better job of showing the highly heterogeneous nature of autism as well as better describing subjective needs of an individual. There are analytical tools designed to map individual needs along these kinds of models, which offers a great deal more information than a point along a scale. You might have heard people describe autistic traits and limitations as “spiky.” This means that someone might have significant limitations in one area but not in another.
A point along a scale, however, lumps together vast swathes of people who might not have the same needs and might even have conflicting needs. Any autistic person, but especially those with more needs, is better served by this more individualized and subjective approach.
Weird that Alison doesn’t love it, to be honest. Weird that she keeps insisting on using this outdated version of the spectrum. Weird that she never mentions the mechanisms that are currently in place to describe the needs of autistic people.
Isn’t that weird?
[Singer continues]
“Jodie is minimally verbal and suffers from painful self-injurious behaviors. Intellectual disability, aggression, anxiety, sleeplessness, and seizures. Her frequent aggressive outbursts make it hard to involve her in community activities. Although she is often content and enjoys working on a farm, no one who witnesses her pulling her own hair or headbutting the wall would call her happy during those episodes.”
[Green resumes]
Well, no, of course they wouldn’t. She wouldn’t be doing those things if she was happy, would she?
See, this is a theme in this article and among these types of parents and these kind of anti-neurodiversity, very, very pro-ABA type people, is that they put the cart before the horse. They put the behavior first. They see behavior before any inquiry as to the motivations or feelings or desires behind that behavior.
You see, nobody would call Jodie happy during those episodes, no, because that’s a sign of an unhappy person. If an autistic person is banging their head, they are probably in some kind of distress.That is what that behavior communicates to you.
It feels as though she’s writing this as though somehow the headbutting and the hair pulling is causing the unhappiness, as if this is a thing she does and that makes her unhappy.
Whereas as somebody who has been known to hit myself, pull my hair, scratch open my skin, it’s because I’m unhappy, yeah, yeah, that doesn’t happen and then I am unhappy, the other way around. And my family and I are not happy. [Singer] puts “happy” in these quotes.
[Singer continues]
“My family and I are not ‘happy’ that she will require 24-hour care and supervision for the rest of her life.”
[Green resumes]
I get that. I can understand that that’s not a thing that would make you happy. I’m still not quite understanding why you are so against a discussion of autistic happiness.
[Singer continues]
“My experience at the Autism Europe International Congress and my experience as a parent of a child with profound autism makes me more convinced than ever that we need to bifurcate the diagnosis of autism spectrum disorder, and add a new diagnosis of profound autism to better serve this vulnerable and underserved population which is consistently overshadowed by the higher functioning members of the autism community.”
[Green resumes]
I would say that autistic people with high care needs are underserved and vulnerable as she says. That’s partly the point of Congresses like the one she attended.
But Singer’s line: “Which is consistently overshadowed by the higher functioning members of the autistic community,”
I’m going to talk a little bit more about that. We’ll get a bit more through the article before I go off.
[Singer]
“The first mention of ‘profound autism’ in the scientific literature came in 2021…”
[Green]
So, the year before she wrote this article.
[Singer]
“…in the Lancet Commission on the Future of Care and Clinical Research in Autism Report. I also served as one of more than 30 commissioners.”
[Green]
Okay so there’s not that much mention of it. Maybe I’ll have to go and read that report. She’s actually linked to it so that’s nicer for her.
[Singer]
“The report stated that the term profound autism is critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism.”
[Green]
Why does “ASD3” not do that? You know that one is a different number to two and that’s a different number to three? We need to distinguish? We already distinguish based people who have high dependency needs. High care needs. That’s exactly what ASD1, 2 and 3 do. Like what am I missing?
[Singer]
“In reviewing several data sets of people with autism, the Lancet Commission estimated that close to 50% of the autism population falls into the category of profound autism.”
[Green]
50%, yeah I’m gonna have to read that.
[Singer]
“This means that for every autistic person trying to get a job at Microsoft, there’s also one who cannot grasp the abstract concept of what Microsoft even is or does.”
[Green]
She’s saying that 50% of autistic people, half, could not even grasp the concept of what Microsoft is or does. I think that’s wrong. I don’t think that’s right. I don’t think that that’s what the Lancet report said.
It isn’t. And the way she came to that number is frankly unbelievable. It’s from this bit here.
[Singer]
“The Early Diagnosis Study or EDX, a US based longitudinal study that followed up children referred at age of two years and up to 30 years, which the Lancet report describes as ‘an early clinic referred sample from nearly 30 years ago.’ Of this study, the commission report claims that the proportion meeting the profound autism criteria was 48%.”
[Green]
But in the other two studies that they looked at, it was 18 and 23%, which is much more like stats that I’m used to seeing. And look, I read the study cited here, citation seven, and it doesn’t show that 48% of autistic people would fall under what the commission is deciding is profound autism.
Firstly, the commission report suggests that profound autism category should include “children and adults with autism who have or are likely to have as adults, the following functional needs, requiring 24 hour access to an adult who can care for them if concerns, arise…”
Sorry, that’s very funny to me because they’re like, um, children and adults with autism who require an adult. You wouldn’t say that, would you? You wouldn’t say that adult needs an adult with them. You would say a carer.
Anyway, that they require an adult to be with them. 24 hour access to an adult, being unable to be left completely alone in a residence, and not being able to take care of basic daily adaptive needs. In most cases, these needs will be associated with a substantial intellectual disability, e.g. an IQ of below 50, very limited language, e.g. limited ability to communicate to a stranger using comprehensible sentences, or both.
Then it says, to represent the intensity of needs as a standard manner, profound autism is thus defined not by autistic features, but by intellectual or language disability.
But what is wrong with saying autistic with an intellectual and language disability? Which is what we do now. And also, if it’s defined by not by autistic traits, then why are you saying it’s a different kind of autism?
And also, those requirements, the ones that they’re suggesting—needing access to 24 hour care or being unable to take care of basic adaptive needs, for example—that is not synonymous with intellectual disability or language disability. There are people with intellectual and or language disabilities who can live mostly independently. And there are people without intellectual or language disabilities who cannot.
When I say “living independently” in this, I mean residing without much in the way of specialist or specific assistance relating to a disability. Nobody is an island. Nobody lives their lives independently.
There are autistic people who can’t live independently due to apraxia or epilepsy or some kind of mental or physical health condition, but those people wouldn’t qualify for the profound category and as such would not gain access to all the supposed hypothetical benefits that Alison assures us are just around the corner as soon as we adopt this word. All those benefits which she alludes to but never quite describes in detail.
And the report actually clarifies that no, other kinds of disability will not get you into the profound club, no matter your level of independence or need. This doesn’t make things easier. This does not individualise approaches to care. This is not more personalised. This is just bunching together large numbers of people really fucking arbitrarily, it seems to me.
But anyway, back to the 48% of autistic people who don’t know what Microsoft is. So the study cited that supposedly shows this 48 number doesn’t. It’s a study analysing positive outcomes of autistic people with and without intellectual disabilities, or more or less cognitively able as the study puts it.
“We created two groups.” More cognitively able and less cognitively able individuals. “More cognitively able describes individuals with a verbal IQ of 70 or above and less cognitively able describes individuals with a verbal IQ below 70 at the most recent assessment.
You will notice that that is not “an IQ of 50 or below” nor is it “requiring access to 24-hour care.” I think they got this 48% number by simply including all of the participants of that study who were considered less cognitively able.
There were 145 participants in total by the end of the study. It was a long study and some people dropped out along the way. There were 19 who were not autistic, a control group. 57 who were more cognitively able and 69 who were less cognitively able. 48% of 145 is 69.
It’s a shame they included the not-autistic people in their calculations there, because if they’d taken them out, they could have got to a whopping 54% of autistic people being profound.
That study was designed to compare outcomes, so it’s only right that they created two fairly equal groups. It wasn’t looking into how many autistic people have intellectual disabilities or anything like it.
I am shocked that this number made it into the Lancet report, but Alison The Science Lady Singer, waving it around in her article as the estimated percent of people with profound autism, I can only assume that that is very purposeful dishonesty. How else does that happen?
It would scare parents wouldn’t it, if they thought their kid had a 50% chance of requiring 24 hour care. It seems to me as if that number was selected to spread as much fear as possible. Seems to be a little bit of a trend these days. If they think that their autistic kid has an almost 50% chance of never knowing happiness or being able to comprehend concepts, a parent believing that, I imagine, would spend any amount of money that they could, on any treatment they could get their hands on. I don’t know the intent of anyone for using a figure like that but I can guess at some of the consequences.
As far as the rest of the Lancet commission report goes there are some good bits. Like for example they go on about how it’s important to include autistic self-advocates and to work towards happy healthy lives for autistic people, which I assume had Alison raging. How dare they?
I could go on about it but this response to a short article is already well over an hour long. What do you think a response to a 60-page report would look like? Ugly.
But what I can do is point you towards [the paper] Autistic Perspectives on the Future of Clinical Autism Research, which is a response to the commission report by autistic self-advocates and autistic experts in the field.
[Green reads from the paper]
“We the global autistic task force on autism research are a group of autistic professionals and representatives of organisations run by and for autistic people. We are autistic clinicians, therapists, educators and researchers, parents and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of colour, autistic people from the global south and Asia, autistic women and autistic people belonging to gender minorities.
“We believe that the report falls short of truly including autistic perspectives. We focus on several key concerns. “One, we feel the report inadequately incorporates the advocacy and scholarship of autistic people and misunderstands the neurodiversity paradigm.”
It does describe neurodiversity pretty shoddily in my opinion.
[Green reads from the paper]
“Two, we consider the functional classification of profound autism to be misleading and counterproductive.
“Three, we point out that the commission’s recommendations are in certain respects incomplete, and therefore risk misrepresenting the necessary priorities for the next five years.
On the term profound autism they have this to say:
“The term would not be sufficient to steer service provision or research efforts, just as functioning levels never were. It provides no useful information to others who may need to interact with the autistic person.
“High support needs are associated with co-occurring characteristics and health issues in many combinations and the level of support needs often fluctuates. It is clearer to use brief descriptions such as autistic person with intellectual disability, autistic person with minimal language or autistic person with extreme anxiety and co-occurring physical conditions. Expressions such as autistic person with high support needs or autistic person requiring 24-hour care are also useful.”
[Green]
Exactly, but [Singer] never mentions it. Listen, listen to the people promoting profound autism as like a new category. See if they ever mention any of that, or see if what they rather do is say it’s one diagnosis and one spectrum, and someone on this end of the spectrum is different to someone on that end of the spectrum. See, see if that’s what they do.
The [paper authors] go on to say the term would also give the false impression of intellectual disability and impaired language development being core characteristics of autism. An autistic person with these characteristics would somehow be more autistic or closer to the deep end of an imaginary linear spectrum than an autistic person without them.
“Profoundly autistic” would misleadingly refer to people who actually have profound impairments that are not autism specific, while not necessarily having any particularly extreme autistic characteristics.
[Green reads]
“Profound autism is thus defined not by autistic features but by intellectual or language disability.”
[Green]
It’s also worth noting that the Lancet Commission report also doesn’t mention the fact that we already have three levels to describe care needs. And you know what? I recently learned from I’m Autistic, Now What that the DSM-5 actually says that we should get two care need level thingies, one for communication and social stuff and a whole other one for repetitive behaviours.
So what’s that now? Hexfurcated? I honestly feel like I’m going a bit crazy making this video. That’s the Lancet and the whole commission. Look at all those authors and I’m sitting here in my room feeling like I’m being pranked. Like the voice of science is playing tricks on me.
[Green returns to reading Singer]
“Families like mine who face profound autism have advocated for this distinction for quite some time. We strongly believe that the breadth of the autism spectrum has become unwieldy.”
[Green]
Unwieldy? Whoa there! Like a wild horse. What kind of autism have you got? Mine’s unwieldy. Oh dear.
[Green reads Singer]
“And the phrase autism spectrum disorder has become such a big tent term that the people under that tent often have little in common with one another.”
[Green]
I bet if you put all the people with depression into a big tent, I bet a bunch of them have little in common with each other too.
[Sad circus music]
But I will push back against that because I do actually think that we do have stuff in common and this is the thing that these types of people don’t realise. And they get it, right, because they’re busy. They have a lot on. They have a lot of responsibility and their life is tough because there isn’t enough support and they’re not really spending much time with autistic people like myself.
[Green reads Singer]
“Autism can mean genius or an IQ below 30. Autism can mean highly verbal or non-verbal. It can mean graduating from Harvard Law School or exiting high school with a certificate of attendance.“
[Green]
Humans contain multitudes. That’s true. Humans can mean genius or an IQ below 30. Human can mean highly verbal or non-verbal. That’s her words.
We say “non-speaking,” by the way.
[Green reads Singer]
“If we are going to be able to personalise our approach to care, as the Lancet commission report suggested, we need terminology and language that are specific and meaningful rather than terminology that lumps everyone together.”
[Green]
You’re the one lumping it all together! You’re lumping! You’re the lumper! Alison.
She even listed her daughter’s disabilities at the top with separate words that describe perfectly her daughter’s disabilities. No, she wants to just call all of that profound autism. Lumper.
[Green reads Singer]
“The neurodiversity community’s success at drawing attention to its issues has led many without deep experience with autism to conclude that those issues are representative of everyone.”
[Green]
Who are you talking about? Cite some stats. Advocates that I’ve seen have made very clear that if you’ve met one autistic person, you’ve met one autistic person.
We do have things in common. Autism, primarily. But we are also individual people with other things and different lives and different disabilities. That kind of sounds like an issue of comprehension, if you’re going to assume that everyone has the same issues.
In this video, I do a lot of like, “I don’t do this and the people I follow don’t do that. And to be fair, I don’t do this and the people I follow don’t do that.” And I do follow a lot of neurodiversity advocates and so I think it’s worth pointing that out, when the neurodiversity movement is being tarred with such a broad brush. Diversity is literally in the name. Like, can we stop?
But the thing is, the movement does have a long way to go. Before we can say that we’re adequately addressing the needs and concerns of those with higher care needs and those with multiple intersecting disabilities and identities. And we have a long way to go before we can say that they’re being included anywhere near as much as they should be.
And it’s just a fact that there are many criticisms and concerns about our community from within our community. The subreddit r/SpicyAutism is run by and for people with ASD 2 and 3 and high support needs, as well as for anyone who wishes to respectfully learn from them. They’re open to answering questions so long as you follow the sub’s rules—which include not speaking over high support needs and non-speaking autistic people.
Some users even include their support needs as a flare on their comments, which makes this rule easy to follow. There is plenty of discussion of the neurodiversity movement. Concerns, ideas, and appreciation. There are vastly different views, and there are multiple threads criticizing the movement itself, or criticizing uses of the word neurodivergent. Some criticisms which I share.
People use the word neurodivergent wrong all the time. It’s not a synonym for any particular neurotype and if you mean to be specific, you should be specific. Neurodivergent people have always existed. Neurodivergent people are underserved by society. Neurodivergent people dislike eye contact.
I’ve also noticed over the years that the neurodiversity movement often gets blamed for the “autism is a superpower” thing. I’m not really sure that’s fair. While some supporters of the neurodiversity paradigm probably do use that kind of rhetoric, I think the general consensus is that it’s a load of rubbish.
And I think that the changes that neurodiversity advocates would like to see, to language of more neutral terms, I think that gets confused with the kind of changes to language of like “it’s not disabled, it’s specially abled” and that kind of thing, which it’s not the same. I can see how it gets muddled together, but in my view neurodiversity being just a way to describe a fact about human neurology, that it’s diverse, that is neutral in itself. That is value neutral, that doesn’t say anything towards the goodness and badness or specialness or anything of anything.
And I actually see the roots of the superpower narrative being more in Oprah-esque culture of manifesting and the Law of Attraction and positivity, like, everything has to be positive and framed in a positive way which is not neutral. That’s the opposite of negative but that’s not neutral. Neurodiversity activists calling for neutral language is not the same as that kind of very American concept of forced positivity.
I think there’s a bit of…some mix-ups going on there that annoy me. Our algorithmically selected home screens. If you’re seeing this video without knowing who I am it’s because the algorithm has decided that you might like my content and the thing about them is they can be extremely exclusionary.
But the thing is, it’s not because the algorithms themselves have exclusion coded into them. They don’t work in a top-down manner like that. They are responding to your choices. You are being shown my video because you watch videos like this one. You watch creators like me. And it is the case that most of the algorithmic attention is on people like me. White, English speaking, someone who has the time and the ability to work for free for years because making money at this thing is hard.
I’ve been doing this for over five years now and this year is the first year that I’ve made enough that I could equate it to a wage, like working full time for minimum wage, after five years. If you can’t do that it’s extremely difficult—but algorithms are not top-down. They’re not deterministic. We can adapt them by changing our choices, and we can use the platforms that we have been awarded, to raise the voices of others, not to speak for anyone but to shine an algorithmic light onto other kinds of advocacy.
The criticisms of the neurodiversity movement from within our community, from those with higher support needs are of course obviously completely and utterly valid, but they are nothing that we can’t address. We absolutely can and we absolutely must and we absolutely must do it, with these people at the centre. Nothing about us without us applies to all of us.
[Green reads Singer]
“To the broader public the word autism now only describes the more verbal, traditionally skilled, visible end of the spectrum because people who meet those criteria are able to have a voice, attend conferences, represent themselves at policy making meetings and appear in the media.”
[Green]
And here we go.
I’m gonna say my thing again. I’m gonna say that thing that I say.
If you think that non-speaking autistic people do not have a voice it’s because you’re not listening.
I’m sorry that you don’t go looking for the many, many, many non-speaking autistic people who are out there online, on social media, on TikTok, on YouTube, with their own websites, with their own blogs, video making, filmmaking, writing essays. I’m sorry that you have failed to look at that stuff, to go and find that stuff, to educate yourself.
Also at that very conference that she attended, I don’t know about that year, but I was… [Green interrupts self] Okay so I got two different things mixed up in my head there.
I thought that I had read about this year’s congress, but I actually read about this year’s [2025] International Society for Autism Research meeting, which Alison attended, participating in a panel on profound autism.
But the point I wanted to make still stands. There were non-speaking autistic people in attendance. There were non-speaking autistic people using AAC to participate in panels. And there were parents of autistic people with high support needs there who categorically disagree with Alison Singer. Especially when she uses her time to praise RFK and the Trump administration.
Thinking Person’s Guide to Autism, who is a parent of an autistic person with very high care needs, was reporting on the event saying, “Singer also says people in the profound autism community are encouraged by RFK Jr.”
And this isn’t the only time she has spoken out in favor of the Trump administration:
“Yet amid the negativity, the Autism Science Foundation, a research Group, says Kennedy has a unique opportunity to discover its causes.”
“Many of us in the autism community give RFK credit for wanting to study the causes of autism,” said Alison Singer, the foundation’s president and the mother of a daughter with autism.
“What would be very positive is if as health secretary he can declare profound autism as a national public health emergency,” [Singer] said, “that would open up a variety of actions he could take like making additional grants, entering into new contracts, and really focusing funding on investigating the causes of autism, treatments, and prevention.”
[Green continues]
Singer isn’t exactly an RFK fan from what I can tell. She writes quite critically about his anti-vax stuff and she didn’t like how he characterized autistic people in his speech—although I would say that her own characterizations aren’t that far from it. But ultimately that doesn’t matter to me if she’s overall supportive of his agenda in office. And the fact is that they share a tendency of using cherry-picked stats to make it seem like autism is a dangerous epidemic. She said herself that it should be viewed as a national health emergency. And RFK also talks about “severe autism” which isn’t an accepted term in psychology but is among a certain group of activists.
And while we’re on the subject of research and advocacy and who gets to speak and Alison being all giddy about what the Trump admin might do for it all, it’s worth noting that according to Thinking Person’s Guide to Autism, at least two panel participants felt unable to safely travel to the USA for the event, precisely because the current administration keeps detaining people at the airports for having the wrong opinions.
But wait, maybe Alison got up to some serious advocacy at this year’s INSAR meeting except, oh…
[Voiceover reads Thinking Person’s Guide to Autism Bluesky post from INSAR 2025]
“In hindsight, it’s pretty freaking remarkable to have an entire session focused on ‘neglecting non-speaking autistics’ and not have even one mention of communication options like AAC, which can help so many if not all. This is unserious advocacy.”
[Green]
Of course, some people are not able to represent themselves at policymaking meetings, but to say that if you are non-speaking and if you have a learning disability, then that means that you are unable—that is bullshit.
That is bullshit.
You’re just not looking. You’re just not listening, if that’s what you think.
So many times have I heard particularly non-speaking autistic people say that they grew up with everyone around them assuming that they didn’t understand anything, when in fact they understood everything.
And every time I hear that, I think of people like this, I think of people who are just assuming, just making these broad generalisations, lumping everyone together, in fact, to say that like 50% of autistic people could never do this, could never understand this concept.
It’s just absurd and it’s wrong. It’s just incorrect. There’s no real excuse for not turning to the many, many self-advocacy groups out there for your education on things like speech based disabilities, intellectual disabilities, or even things like epilepsy, apraxia, or any other kind of neurodivergency.
[Video of a young woman with long dark straight hair and Down syndrome, addressing the camera]
“Hey bartender, you assume that I cannot drink a margarita. So you don’t serve me a margarita?”
[Bartender]
“Why don’t you drink a margarita?”
[Young woman continues]
“Your assumption becomes reality.”
“And parents. You assume that I cannot live on my own. So you don’t encourage me to live on my own. So I don’t live on my own.”
“Teacher, you assume that I cannot learn Shakespeare. So you don’t teach me Shakespeare.”
[Teacher at a blackboard speaks]
“Old McDonald had a farm.”
[Young woman continues]
So I don’t learn Shakespeare.
[Video of Jordyn Zimmerman, a young woman with long brown wavy hair, with AAC voiceover]
“I was in and out of the local public high school and had a few segregated placements at schools aimed towards the instruction of autistic students. I experienced long hours of pointing to my nose, repetitively completing addition and subtraction problems, which I had done for years before, listening to people speak about the troubles I caused. Regardless of where I was, the academic content that one would expect at each level was essentially non-existent.”
“I have most definitely felt underestimated because of the way I communicate. I often think of the educational reports that were written about me. I was listening the whole time and they broke me internally in pieces. When I was in middle school, I vividly remember hearing about my IQ test that was in the 60s. I don’t know why that sticks out so much and I now believe these tests are a terrible measure.
“But worst of all, I am automatically presumed to be incapable of tasks I am attempting to accomplish.”
[Video with the young woman with Down syndrome continues]
“Assume that I can. So maybe I will.”
[Green]
I’ve of course created a resources document which you can find in the description, including a link to where you can rent the documentary This Is Not About Me, featuring Jordyn Zimmerman, educator, organizer and disability advocate, who is a non-speaking autistic woman who didn’t get access to augmentative communication until she was 18.
She talks about her childhood, how she was deemed by those around her to be incapable of communication, understanding, or critical thought. And so was barred from access to the tools she now uses to thrive and help countless others.
The documentary was made with the support of Communication First: “Communication First is the only non-profit organization dedicated to protecting and advancing the civil rights of the more than five million children and adults in the United States who, due to disability or other condition, cannot rely on speech alone to be heard and understood. Our mission is to protect and advance the rights, autonomy, opportunity and dignity of people with speech-related disabilities through public engagement, policy and practice reform, and systemic advocacy. We work to ensure the majority of our leadership experiences a communication related disability or health condition or otherwise identifies as disabled. In addition, we strive to ensure that our community’s great diversity is reflected both on our board and in our work.”
They work to support anyone with a speech-based disability and Jordyn Zimmerman is actually a chair on their board of directors. There was support by ASAN, the Autistic Self-Advocacy Network, a non-profit organization run by and for autistic people, AssistiveWare, who develop communication technology, and Thinking Person’s Guide to Autism, which is a community-run online information source which publishes the work of all kinds of autistic people.
I’ve linked to a ton of stuff below, so when I tell you to listen to autistic people I really couldn’t have made it much easier. Also, please add anything that I missed in the comments, like a lot of this stuff is USA-based so it’d be nice to hear from things from other places.
Speaking of, I’d also like to point you towards Inclusion Europe who fight for equal rights and full inclusion of people with intellectual disabilities and their families in all aspects of society:
“Our key values are: Respect for people with intellectual disabilities, their opinions and choices. Solidarity between weaker and stronger persons, generations and organizations. Inclusion of people with intellectual disabilities and their families in all aspects of society as a result of respect and solidarity.”
They set up the European platform of self-advocates which has 20 member organizations from 17 countries and it “Makes sure Inclusion Europe is an inclusive organization, selects three board members of Inclusion Europe, gives Inclusion Europe feedback on how well self-advocates are represented and included, and self-advocates represent Inclusion Europe at conferences and meetings.”
They also publish resources and literature in easy-to-read formats in multiple languages and they run the podcast Inclusion Europe Radio in English.
“Inclusion Europe Radio is a podcast dedicated to exploring the rights, challenges and achievements of people with intellectual disabilities and their families across Europe. Through in-depth conversations with advocates, experts and self-advocates, the podcast highlights stories of inclusion, practical strategies for change and insights into creating more accessible and equitable societies.”
And finally, point your eyeballs at Neuroclastic, a non-profit online information source which publishes work from multiple non-speaking autistic people as well as those with intellectual disabilities.
I have decided to donate ad revenue from this video to Communication First and Inclusion Europe. So after 10 days I’m going to see however much this video was made on ads and I will split it evenly between those two organizations so share it widely.
Of course not every disabled person can or should be a disability advocate. It’s a tough job, it’s a lot of effort, a lot of putting yourself out there and of course we can need various supports in order to do so.
But Jesus, it is still better to engage those of us who can, those of us who do have those supports in place than it is to turn you back on the concept of self-advocacy. To insist that the spotlight must always be trained on non-disabled experts and parents. It must surely be better to work towards supporting as many people as possible to be as autonomous as possible. It has to be better to presume competence, to presume at least understanding.
But many people who share Alison’s views would call this idealistic. They would say that I am failing to understand reality. They will present examples of people they know who are not competent and who don’t understand.
[Content note: Jill Escher, who is speaking]
“And you know that’s just reality. You know people just don’t, a lot of people don’t even know I have a son, right? They just never see him!”
[Green]
Nobody who follows you on Twitter would think that though would they Jill, given how often you post photos of him as if the mere sight of him is some sort of “gotcha.”
[Escher continues]
“And he’s not going to be on a TV, he’s not going to be on a panel, he’s not going to speak out at the IACC, he’s not going to you know um uh you know lead a rally, he’s not going to be on Twitter tweeting about his reality. Nothing, nothing, nothing. So he’s about as invisible as you can get I think. They had this, they ran this article. ‘Doctors With Autism Speak Out Against Stigma.’ All right so uh never mind the fact that neither of my children even understand what a doctor is. Ha ha! But you know there’s “doctors with autism” and…”
[Green]
But I’ve also heard similar people declare that children will never do something that they then go on to do. Your anecdote about the person that you know doesn’t actually trump the experiences of all those autistic people who were told that they would never do something that they now do. All those people who were barred from supports which they now use to live fulfilled lives because of a presumption of incompetence.
I just think it’s better to try to exhaust all options before declaring a human being incapable of understanding or thought. And saying that kind of thing about a child to me is barbaric.
Many of these organizations like the National Council on Severe Autism will say that they are advocating for those who cannot advocate for themselves. But they’ll provide no reason as to why they shouldn’t include those people who are disabled in a similar way. Non-speakers and those with very high care needs but who have the support in place to do some advocacy.
Why should we not be listening to these people?
Why are you not including them?
[Escher tweet read aloud]
“Another idea for solving the puzzle of autism. Put Doge on it. Big data and AI may make progress where traditional science has failed.”
[Green]
I don’t see easy read format literature coming out of these groups. I see scientific reports from people who are not scientists. I see interviews and articles that seem more concerned with decrying the neurodiversity movement and concept of autistic self-advocacy as dangerous anti-science, when their own comment sections are full of anti-vaxxers and pushers of unproven untested potentially dangerous autism treatments.
I’m sorry Alison. I know that you yourself are not an anti-vaxxer. That’s why you get to be the Voice for Science after all. But I’ve seen your organisation’s Facebook page, and I’ve read the comments on on any post that denies the role of vaccines in autism, and I’m sorry to say Allison, but the the anti-science call seems to be coming from inside your house.
[Green reads from Singer’s paper from earlier]
“The result is that autistic people with severe intellectual disability and the most challenging behaviours have become invisible and have been left behind.”
[Green]
Now I don’t even I don’t disagree with that. I disagree with the causes of that.
Autistic people with severe intellectual disability and challenging behaviours are left behind by society, are left behind by capitalism, by private health care… I was going to do this whole like “What Is Neoliberalism” thing here but actually, just google it. Google neoliberalism and then…stop voting for it.
But if you’re not going to do that just know that these endless cuts to things like welfare, education, health care, that always seem to coincidentally happen when these neoliberals are in charge… Well it’s not a coincidence. It’s the whole point of the ideology. It’s a feature, not a bug.
Without going on a big anti-capitalist rant because I want this video to be accessible, just stop voting for people who see public spending as a waste, as an expense. Vote for people instead who see it as an investment because that’s what it is. You invest in a population and you reap economic returns. Magic.
And I’ve seen all you autism parents on TikTok handing it to Trump and RFK. I’m Autistic Now What has a great video on this with clips of parents urging the autistic community to just wait and see what happens. Maybe it’ll work out great. At least they’re talking about autism. I’d rather they weren’t. I’d rather those men in specific were not, in fact, talking about autism. Those TikToks were a kind of upsetting watch if I’m honest. I didn’t like it.
I’m Autistic Now What’s video is great, but the TikToks? I kind of wish I hadn’t seen them. These are men who have pledged to cut even deeper, even more into welfare, education, healthcare, programs for diversity and inclusion. They’re just dismantling whole departments. These people aren’t going to help you. They’re not going to help us. They’re not going to help anyone but themselves and their friends.
The neurodiversity movement is such an obvious scapegoat. The fact that autistic people on TikTok are being blamed for your family not getting the support they need. When those people on TikTok are not getting any support and you’re handing it to, you’re giving credit to people who are promising to remove support.
Families of autistic children with high support needs can’t get access to necessary care precisely because we keep voting for people who do not view that care as necessary. People who think that only those who can afford to pay should get, and they limit access on purpose to force you to pay for what you should be getting for free.
It’s their fault. It’s not because people like me are gobbling up all the resources. They’re not out there dishing out extra portions of pie to low support needs autistics. They are making the pie smaller for everyone.
AAC devices can cost thousands of dollars. Communication should be a right and families should not have to pay out of pocket for accessibility aids. And that’s just for the device itself.
And yes, there are low tech options. There are much cheaper options. But for any of the options, usually you need to work with someone. It takes a while to find out what might work for an individual. You need to work with a speech therapist or something which might also cost money.
We can’t keep underfunding health and social care and then blame the consequences on autistic advocates on TikTok who in all likelihood aren’t getting any supports themselves.
Are you really going to argue…I actually think she would argue this, that even if an autistic person is non-speaking, even if they have very high care needs, even if they have been where her daughter is, even if they have intellectual disabilities, even if they have seizures—if they ever do make their voice heard, that will discount them from being able to empathise.
Only, only the parents of people like her daughter, only them, only them, only THEY can empathise, because as soon as you do make your voice heard, even if you have to use assistive technology to do it, even if you have to get somebody else to type it up for you, as soon as you are able to make your voice heard, we shouldn’t be listening to it.
[Green continues to read from Singer’s paper]
“This blind spot was painfully illustrated to me at the Autism Europe International Congress where the vast majority of delegates represented the higher functioning end of the spectrum…”
[Green]
If I stop every time she says something like that, I’ll never get through this.
[Green continues to read from Singer’s paper]
“…and yet claimed to speak for everyone with autism.”
[Green]
Did they? Quote me someone. Quote me someone saying, “I can speak for everyone with autism when I say…” and then tell me what they said. Give me a single example.
I’m not sure I’ve ever heard an autistic advocate claim to speak for everyone with autism. Maybe they were all at that conference and that’s why I missed them, but she doesn’t… there’s no quotes, there’s no links, there’s no examples.
[Green continues to read from Singer’s paper]
“Many delegates became visibly angry over some of the terms presenters used in their talks to describe autism traits such as ‘patient,’ ‘disability,’ and even ‘intervention.’ Many took to social media to bash these scientists. Others walked out of the room.”
[Green]
I don’t know how true this is, I’ll just take her word for it, I guess, that people walked out of the room. All the autistic advocates that I follow do call autism a disability. I rather think there was just a little bit more to it than that, maybe. Okay…
[Green continues to read from Singer’s paper]
“But these words are necessary and correct. My daughter consumes medical services that makes her a patient”
[Green: Yes, it does.]
“She has a disability”
[Green: Yes, she does. So do I.]
“If she didn’t, she wouldn’t qualify for services”
[Green: Yeah, she wouldn’t.]
“The same is true for many other families who suffer” [Green: Yes, suffer] “from profound autism.”
[Green]
But I call it a disability, I think autism is a disability. I’d argue that it objectively is so, so I don’t know, point me at these neurodiversity advocates who won’t let you say “disability” and I’ll have a word with them.
[Green continues to read from Singer’s paper]
“There were several instances at the conference in which the presenters gave evidence of this growing dichotomy. The most vivid was the keynote address by Brian Boyd, a distinguished professor in education at the University of North Carolina at Chapel Hill, titled ‘Reconceptualizing Repetitive Behavior in Autism.’”
“Boyd presented two videos to represent different types of repetitive behavior. The first showed an autistic adult who had parlayed his special interest into a job and who spoke eloquently about the challenges of socializing and how he values his time alone.”
[Green]
Like I haven’t seen this, I haven’t seen any of the videos, I can’t find footage, I’ll try and have another look. But I just feel like she’s really downplayed probably what this man said. “Oh you know, I have a few issues with socializing and I do appreciate my time alone.” Okay, maybe that’s what he said.
[Green continues to read from Singer’s paper]
“The second video was preceded by a trigger warning, greeted with oohs and gasps from the audience, and immediately criticized on Twitter as it showed a profoundly autistic child engaging in self-injurious behaviors.”
[Green]
Now, I looked on Twitter, I searched the hashtag for the conference, I searched the name Brian Boyd, keynote speech, that kind of thing. Largely the tweets that I saw from neurodiversity advocates that I follow, some of whom are mutual, mutuals with me, so I know that they’re neurodiversity advocates. The tweets about the speech were largely positive, like most of them are saying yes, we do need to reconceptualize autistic repetitive behavior, and you know it’s not all the same, there are different kinds, and some can be harmful to the individual and some can be beneficial to the individual.
Nobody was bashing him, no one that I could see in my Twitter search was bashing him. I saw one tweet questioning whether the person in the video having the meltdown had consented for that to be shown, and I think this is probably the primary criticism or question about that is did that person consent for you to show like a thousand people, them in a really vulnerable situation, having a really bad time, which I think is a fair enough question to ask.
You wouldn’t like it, would you? Someone showed you having a, having a breakdown, you know, without your consent.
[Green continues to read from Singer’s paper]
“The video reflected a normal day for many families with a profoundly autistic child who can’t, as Boyd suggested the attendees might do, cover their eyes and ears to hide from what is happening around them.”
[Green]
She’s just quoted, “cover their eyes and ears.” I don’t know if he’s actually saying, “you lot, you will all cover your eyes and ears and pretend that this isn’t happening” because it just feels like such a weird mischaracterization of neurodiversity advocacy. I just don’t think any, that we are pretending that meltdowns don’t happen, that we’re pretending as if self-injurious behaviors don’t happen.
[Green continues to read from Singer’s paper]
“If those who purport to represent and speak for the full autism spectrum can’t even observe for a few seconds the daily behaviors many with profound autism experience, how can they advocate for their needs?”
[Green]
That just seems hyperbolic. I think a lot of autistic people do find it quite triggering to watch other autistic people having a meltdown, precisely because we understand, we’re not just seeing behavior, we’re not just going like, “oh what problematic behavior that individual is expressing?”
We feel it, like it’s precisely because we empathize, because many people in that audience have been there, they know what it feels like, they know how painful it is, how it feels as if you are being ripped apart.
Yes, I have bashed myself in the face, I have given myself welts all over my head, and if the idea of somebody filming me and showing it to a bunch of people, and I don’t know if the person in that video consented or not, maybe they did, I’m not saying they didn’t, but just if I was in that audience watching someone having a meltdown I would feel very uncomfortable, I would maybe look away, not because I’m trying to ignore it—oh no no, I’m trying to pretend it doesn’t happen because I know it happens, because it’s happened to me, because I know how it feels, because it triggers those feelings, it reminds me of how it feels, it’s uncomfortable, because it’s uncomfortable.
You are seeing people displaying empathy and judging it as they’re all, they’re covering their eyes, they’re doing, they don’t want to look at it, no we don’t want to look at it, doesn’t mean we don’t know it happens. Very significant leaps going on in this.
[Green continues to read from Singer’s paper]
“Boyd rightly pointed out that these two people need vastly different types of interventions.”
[Green]
Did he say “interventions” or did he say “care”?
[Green continues to read from Singer’s paper]
“As they faced vastly different situations”
[Green: Yeah, people are different, you are right.]
“He rightly pointed out that these people need vastly different types of interventions as they faced vastly different situations. What he described were in fact two extremely different types of autism.”
[Green]
No! They will never ever be able to draw a clear line between profound and unprofound autism.
I mean you know what I think about IQ, you know that I don’t think that IQ tests actually measure intelligence. I think that all they measure is how good you are at an IQ test and if you would like to know why I think that then you can go and watch this section of this video. I have my opinions, I think it’s all a bit silly, but we need to talk about it as if it’s a thing worth talking about because these guys won’t shut up about it.
So measuring IQ in very young children is tricky, it changes as they develop and there is some evidence to suggest that in adolescence as well IQ can vary up to 20 points again as development progresses and that Lancet commission report, they even say that the term profound autism is not appropriate for young children and the term might be most helpful in adolescence and adulthood because the proposed criteria of profound autism largely rests on one’s ability to live independently, “needing an adult.” Adolescents and adults who need to have an adult with them.
But you know, I get the feeling that a lot of the pushers of the profound autism category are absolutely categorically using it to describe children, including very young children. Like even when you search the word “profound” on TikTok it auto fills with “profound autism kids.” Alison’s article is using profound autism to talk about children.
[Green continues to read from Singer’s paper]
“Similarly in her keynote address Lord showed data on the outcomes of people with autism based on a 30-year longitudinal study, no links. The outcomes of those with low IQ scores who likely would qualify for the profound autism diagnosis were drastically different and far worse than the outcomes of those who are higher functioning. And when asked how people in the study felt about their future, verbal young adults cited ‘mood anxiety and depression’ as core factors in their happiness. Whereas the parents of less verbal young adults described difficulties with aggression as the key determinants.”
[Green]
Do you not think that aggression is rather linked to mood anxiety and depression? See this is what bogs me so much and she’s doing what a lot of them do is they move the goal posts all over the place, they put carts before horses all over the place and everything is so cherry picked. You cannot compare what people say about themselves to what family members say about people. That that’s not the same. Do you understand why that’s not the same?
And she even says parents of “less verbal young adults.” Minimally speaking does not mean cannot make their desires known. There is so much assistive technology out there for people who don’t speak—and I know that access to this technology is really limited. Okay so not only is this stuff expensive, not only might people need to experiment with different types of communication aid before finding one that fits, but special education teachers might be lacking training on how to effectively use these devices. Families might give up too soon when their child doesn’t respond immediately. People in society can be impatient as f**k when someone is using an AAC device, just not giving them time and space to express themselves fully.
As far as I can tell it’s the groups and advocates that I have highlighted, the groups focused on self-advocacy and communication as a right. It’s they who are putting in the most effort to try and get AAC devices into the hands of those who need them, who are offering advice and resources for anyone who might live or work with people who rely on AAC, who are welcoming AAC users into their advisory boards. Those groups who think that the disabled people who they serve can in fact live happy lives and who are doing everything they can to make that a reality.
Families absolutely do not get enough support in that journey, and you know I learned about this from the neurodiversity movement, from ASAN and from listening to non-speaking autistic people, but there is this constant assumption with these profound autism people that an inability to speak means a complete inability to make one’s desires known and that scares me, that is scary.
If you think that a happy life is just a complete waste of time, like trying to make your autistic loved one happy is a complete waste of time because they will never be happy and then you’ll never try and then they never will be.
And I have now seen multiple testimonies from parents who had put their child through ABA, through full-time hours of ABA for years, who are aghast at what they did. It’s so scary and this is another video I’m working on is the ABA lobby.
I do feel for parents because as soon as their kid is diagnosed they are just, especially in the States, they are bombarded from all sides. “You need to put them into 40 hours of ABA or they’ll never do this, they’ll never do that, they’ll never do the other thing”—and then when these parents realised that they were wrong, and that all this training and intervention had only hurt their child, had only made their child regress into themselves…
[Autmazing]
“Everyone had always made it sound like it [ABA therapy] was the only choice that we had and it was the right thing. Everyone said it was the right thing and now my gut was telling me it wasn’t the right thing. It hadn’t been the right thing all along. I was afraid that taking them out was going to do something to hurt them because it was what everyone else said.”
“But I was talking to my own doctor yesterday and when I brought up ABA he said, “Well it’s not really that it’s the best thing, it’s that it’s the only thing. It’s all that we have and that’s why so many doctors push it.”
“And so this is what we have seen since our girls have been out of ABA. It’s been good and I think part of that is that she was always so tired before when she would get home. She would just come home and go to sleep. It was like we never saw her, and so now it’s like we’re getting to know Tessie for the first time since she was two, and that’s been really nice.”
“With Maggie I noticed real changes almost immediately. By the end of the first week she was talking more, drastically more. She was just saying things and she started telling us that she didn’t want to go back to school. No bus, no school. She is really against all things school now, and I can’t really blame her at this point.”
“I would say that the next thing we saw was most of her negative, what you would call behaviors, pretty much vanished. Pretty much any behavior that I would wish not to see disappeared.”
“And probably the biggest piece of that is that we were working with Maggie on not eloping for the last, what, six years? Basically her whole entire life, but especially since she started ABA when she was three. That was probably our main goal in every single meeting that we had and in the past every time she’s ever gotten out of our yard she took off running and headed for the highway, headed into town. It was very scary.”
“I can say that it seems like her desire to get out has greatly decreased. She’d asked to go to bed and she’d go up to her room at 6:30 when she was in ABA and now she stays up till nine playing with the other kids. It’s just, it’s good. It’s so good. It’s changed everything.”
“Now when she’s upset instead I ask her why she’s upset and why she’s doing that instead of just ignoring the bad behavior and usually she can tell me, and everything’s changing.”
[Green continues to read from Singer’s paper]
“In short, if we are going to meet the needs of autistic people with different types of autism, we need very different types of intervention based on their functional level.”
[Green]
Another way of putting this would be if we’re going to meet the needs of different autistic people then we are going to need different types of care. Yes we are—not functional level; needs and abilities! The thing she claims to want is precisely what the neurodiversity community is trying to achieve.
[Green continues to read from Singer’s paper]
“One of the themes of the Autism Europe International Congress was a call for greater participatory research. [Green: Cool.] At the meeting this meant research being done by and with the input from high-functioning adults with autism but not from parents.”
[Green]
Are those the two groups? Autistic people can be parents. There are autistic people who are parents of autistic kids with very high care needs. In fact. It’s so gross. It’s so underhanded and manipulative.
[Robert Evans at Behind the Bastards Podcast]
“Looking at a lot of how much of right-wing policy is based upon the idea that parents own their children. Literally like anything a parent wants for their kid, that’s all that should matter. Which leads to a lot of heinous abuse. Some of the worst things that happen in our society is because of our conception of the family as this thing in which the parents, primarily the father, possesses everyone else.”
[Green]
It doesn’t matter to them how much you’ve had to overcome, how many barriers have been in your way for you to get the opportunity to speak, because as soon as you open your mouth, they’re not going to listen to you.
The profoundly autistic people that she’s [Singer] talking about, she’s not interested in helping them, supporting them, in being able to advocate for themselves. She’s declaring it impossible and therefore don’t even try, just listen to me.
And also implying that that’s 50% of the autistic population who just will never be able to advocate for themselves, never be able to make their desires known, never be able to understand concepts. So even if they are, even if they again do somehow with support manage to advocate for themselves, should we really trust them? Because they can’t understand concepts like Microsoft.
Maybe they’re just wrong. Maybe we should still listen to me.
[Green continues to read from Singer’s paper]
“Much of the research the delegates called for focused on mental health and well-being. [Green: Oh no.] But when it comes to the type of research needed, there are dramatic differences in priorities between verbal autistic adults and parents of profoundly autistic people as Lord articulated.”
[Green]
There’s dramatic differences in the priorities between verbal autistic adults and the parents of profound… Oh my god, this is… Oh, it’s giving me cramp. Parents of profound… Which is not a category that exists. She’s using it every time because she wants it to be a category.
[Green continues to read from Singer’s paper]
“According to several delegates and posts on Twitter, any intervention research, behavioural or pharmacological is ableist, neuronormative, and pathological. Yet this is exactly the type of research families of those with profound autism want, need, and deserve.”
[Green]
The autism treatment industry is worth tens of billions of dollars per year. Now that’s obviously a broad term which includes useful things like communication therapy, occupational therapy, assistance for autistic adults in living independently; but also ineffective and possibly dangerous medical treatments such as chelation therapy, hyperbaric chambers, and an unknown number of workshops, interventions, and products, some of which will be based in evidence and agreed upon research. But many of it will be based in new age ideals, anti-science alternatives and just straight up capitalist greed.
Parents report a difficulty in parsing the good from the bad when they are being inundated with options to pay for. When people who represent industries and private interests try to convince them that their treatment option is the right one for your child.
I get it. It sounds really scary and confusing, and you’re also busy trying to look after your family at the same time. Maybe when faced with such a tsunami of information, some of it sound, some of it incredibly dangerous, maybe it would be useful to hear from people who have been Autistic people who know what it was like, and who know for themselves whether or not it helped them. Maybe.
Maybe that’s one of the first things I would do if I was in that position. Maybe the first place I would go to for advice is autistic forums full of autistic adults, who are more than happy to answer any questions I might have about the things I’m thinking about putting my child through.
So many of these forms of quack treatment rest on the idea that some kind of environmental toxin is the thing that caused the autism. Something in the diet or heavy metals in the system. Something that needs purging, rectifying. The very same idea that RFK junior is now exploring with money and resources that could be going towards supporting autistic people and their families.
The research has been done. Is being done. Potential environmental factors in autism is continuously being researched. Genetic research is constantly underway. That’s how researchers agree on the genetic role of autism.
When people like Alison moan about the neurodiversity movement standing in the way of research, they’re describing a population that has been researched and studied for over a century. A population which is finally able to say hey, hi, could we maybe get some research into our standard of living and mental health and stuff for a sec real quick? As a treat? Just a little bit of focus on existing autistic people and how to help us.
Autistic self advocacy is kind of new. It’s only been a thing for what, 30 years? It’s only had any real sway for what, 10 years? And I don’t know how much impact it’s actually having on existing research.
Rather what I think I see happening is other research also taking place thanks to autistic advocacy. Research that gets nowhere near as much funding as you would get if you were doing some kind of genetic study. But now some research and some funding is being focused on autistic well-being.
And what? It’s too much? That’s too much now? It’s gone a step too far.
The ABA industry is worth 8 billion a year and is projected to grow by another 2 billion over the next five years. Autistic self-advocates have been criticizing ABA for years now. Decades.
Whatever you think about it, I think we can agree that it’s very controversial. Autism Speaks, the most controversial charity organization out there. It’s like super famous; autistic people hate Autism Speaks. They still raise tens of millions a year? They’re hardly struggling.
All the autistic-run organizations that I’ve seen are like scrappy little underdogs compared to these people. Like, can you please wake me up when our supposed powers to stop research dead with a tweet kick in?
[Green continues to read from Singer’s paper]
“On the other hand, in the profound autism community,” [Green: so that’s just parents] “studies of determinants of autistic flourishing are viewed as luxuries, as families struggle to meet their children’s basic needs and keep them physically safe.”
[Green]
Again, there’s a lot of things mixed up there. Families out there are struggling to meet their children’s basic needs and keep them physically safe. You’re right. So what do we do about that?
Support some kind of socialist version of health care and social care. Try and break out of the atomized, individualized way that we raise children and run families these days where two or maybe even one person is expected to do everything to care for children completely by themselves which is just a hard thing to do well even in the best case conditions.
Families are struggling, but it’s not because “highly verbal, high-functioning adults” are advocating for themselves. This is a woman [Singer] who said that she has to give credit to RFK because finally someone is doing the research we need.
[Green continues to read from Singer’s paper]
“Another theme at the conference was the need to use neutral, non-threatening language.”
[Green]
Oh no! Oh not autistic mental health and non-threatening language, the horror! Jesus.
[Green continues to read from Singer’s paper]
“Several presenters actually amended their slides at the last minute to remove any trace of language that might get them called out by neurodiversity advocates on social media. Soon they may be afraid to present scientific findings at all for fear of being cancelled!”
[Green]
They’re not very good scientists then are they? It’s not how science works.
So silly, that’s just so silly. And like oh no they amended their slides. That’s like burning books. Again she doesn’t give any examples. She’s not like, “oh this person was going to say this and then they have to say this instead.”
I imagine that it’s probably things like, I don’t know, they said ‘low-functioning’ and then they changed it to ‘autistic with high care needs.’ That gets the information that you want to get across without it sounding horrible.
And also that’s one reason why we don’t say low-functioning. The reason why we don’t like to say high-functioning is because all autistic people are disabled. Whether you think we think that or not, Alison, that is what in fact I think. So to call somebody who struggles, struggles to do daily things, struggles with daily tasks, struggles to keep employment or to gain employment, struggles to have friends in a social circle or to live independently, calling them “high-functioning,” That does the thing that you’re accusing us of doing.
It denies their disability. It robs them of their need for support. It dismisses their struggles. It does all the things that you’re afraid of, apparently.
[Green continues to read from Singer’s paper]
“There is nothing beneficial or even neutral about cleansing the words needed to describe the scientific and practical realities of autism. Such so-called neutral language robs the community of the ability to even describe the day-to-day lives of people with profound autism.”
[Green]
She doesn’t give any examples. Which words? Or is it just speaking about them in a neutral way is in itself harmful?
To me “disability” is a kind of neutral…”disabled” is a neutral way of saying that someone’s disabled, to be honest. That’s not a bad word.
First, she never says, it gives examples of the words that she’s not allowed to use, that she needs to use, that it’s impossible, it’s impossible to talk about reality without them.
Secondly though, she doesn’t ever talk about the words that we do use. She talks about this big gap in language but never ever discusses the words that we do use.
[Green continues to read from Singer’s paper]
“After speaking to many of the congress’s delegates and presenters, it seems clear to me that the broad autism community as currently defined will never agree on priorities, needs or language.”
[Green]
I think there is a general consensus, in fact, and I think that’s actually what you’re complaining about. The reality of conflicting needs isn’t something unthought upon within neurodiversity organizations. In fact, self-advocacy groups I mentioned have provided resources and information about how organizations and groups might account for conflicting needs including resources in easy to read formats.
Conflicting needs is a reality of disability and accessibility, and it is only through collaboration, participation, and hearing from as many disabled people as possible that we can work to support everyone in the community. When needs conflict, we need to address it on a case-by-case basis, taking into account the individually conflicting needs as well as the situation in which it’s occurring.
But what we don’t need, again, is for vast swathes of autistic people to be lumped together into two separate groups which may, no, definitely will, contain conflicting needs within those groups.
And there is consensus on things. That doesn’t mean that everyone is going to necessarily agree or every single person always goes along with it, but there is consensus on some things.
For example, we no longer use ableist slurs to refer to people with intellectual disabilities, that kind of thing. That used to be standard in a psychiatric field, but now you would never hear that language at one of these congresses, because we’ve agreed it’s bad.
There is in fact consensus that autism is extremely genetic in nature, and despite neurodiversity advocates still having access to Twitter the research somehow continues.
And let’s remember RFK never said owt about a cure. He said he would find the cause. At the end of this there is not going to be some magical pill that you can give to your child which will remove them of their autism. Nothing that this man will do will benefit existing autistic people and their families in the USA, or anywhere else.
The neurodiversity movement is there to advance the rights of those with brain-based disabilities. Do not let those who have financial and political interests convince you that we are the enemy.
Yes, vulnerable and hurt people sometimes say mean things online. Trust me, I get abuse and harassment every single day but I don’t let it stop me. I don’t let mean comments stop me from speaking out about the advancement of human rights. When these people cry out about the “neuromob” and all their tweets they are talking about random people who are angry and vulnerable.
The characterization of the neurodiversity movement that I’ve seen from some of these people is so cartoonishly simple, so ridiculously narrow that I can’t help but think they’re doing it on purpose.
[Dr. Lee Wachtel]
“And these are some things that I sometimes call like advocacy luxuries. Eye contact is overrated. Did you happen to know that autistic adults don’t like the use of the puzzle piece? Well, that really doesn’t interest me at all.
“Frankly, when you work in a facility where the daily tasks involved, caring for people recovering from retinal reattachment surgery, updating different regimens and protocols for protective equipment, dealing with medical disaster after medical disaster, my interest really doesn’t lie in whether people like the puzzle piece or not because I have such bigger fish to fry and I know that the families that we’re serving and the hundreds of families who are on the wait list and hoping to be served by Kennedy Krieger or by other facilities who work with individuals with profound autism also have much bigger fish to fry and these types of things would be truly luxuries in their lives to be able to consider.”
[Green]
Characterizing a civil rights movement based on 30 seconds of research in Google images, are we doctor?
Sure, no, we’re all about the logos. That’s like our main beef. If you’ve watched my content long enough, you’ll know I’m never shutting off about the logos. Bastard puzzle piece! Everything would be fine if we could just stop using the puzzle piece. That puzzle piece haunts my dreams.
Could not care less. If you see somebody trying to describe to you “what the neurodiversity movement thinks” and then backs that up with a handful of cringy tweets and Google images, they’re probably trying to do a propaganda on you or they’re just really wrong, and have an internet connection. It’s probably just that one.
Yeah, I’ve seen people say that autism isn’t a disability. I saw one the other day who said that all disability is a social construct. But when I see things like that, I think to myself, that person is wrong. That is an incorrect thing that that person said. I don’t turn my back on a civil rights movement because people who support that civil rights movement said some silly things online. If I moved away from my leftist principles every time a leftist annoyed me, I’d be a neo-f**king N**i by now.
Neurodiversity is just a fact. Human neurology is diverse. Sorry. Disability is a fact of human existence. Humanity has never existed without disability, without neurodiversity. But that fact doesn’t actually negate the need for research, funding, or support for disabled people.
It just doesn’t, no matter what they say. In fact, I would argue that if we accept the neurodiversity paradigm, accept that disability is a fact of human existence, then we might better focus on making sure supports are in place for a population of people who are always going to exist. Maybe?
They, your RFKs and people, they want to eradicate it so they don’t have to fund the shit we need.
I say disability will always exist because it will always exist and so therefore we should work on creating a world that is more accessible to as many people as possible. They seem to think that at some hypothetical point in the future, maybe September, maybe not, maybe six months after September, who knows? At some point we’re going to eradicate it. We’re going to get rid of it. So why bother caring for the existing disabled people? Why would you bother changing society to accommodate a population which we seek to eradicate? The entire history of medical and psychiatric research into things like autism has been to the end of finding the cause, finding a cure and more than a century later we are still not close.
The neurodiversity paradigm is not anti-science, but denying the natural diversity of human neurology absolutely is, and focusing on eradication is eugenics. That is what that word is there to describe.
So I know they don’t like hearing that but words have meanings. You see it’s very important that we keep these words so that we can accurately describe reality. You understand. They want to make it seem that this is divided, split right down the middle, so what we need to do is split it because we’ll never agree so we need to divide. It’s very separate, it’s completely different and it’s bollocks. That is bollocks.
[Green continues to read from Singer’s paper]
“It is time to admit that lumping everyone together along one spectrum,” [Green: along one spectrum?] “has created rancor and ill will.”
[Green]
Yeah. In you.
[Green continues to read from Singer’s paper]
“There are real world implications for people with profound autism when high functioning advocates seek to defund and deprioritise medical research, block access to treatment in clinical care, censor necessary and accurate scientific language, and advocate for policies that cause real harm to those who will not and cannot ever live independently.”
[Green]
Give an example. Give one single example because we all know what she’s talking about.
Defund and deprioritise medical research. The medical research that RFK is doing now. Creating a registry potentially of autistic people. Medical research that’s trying to pin the cause of autism on things like vaccines, heavy metals, toxins. Research that has been done?
Blocking access to treatment or clinical care. You mean speaking out about ABA? Is that what you mean? I have to guess because no examples are given.
ABA has not been blocked, it’s a huge industry. It’s still the only thing that is recommended by doctors in America when a child is diagnosed with autism.
What else are we doing? Censoring necessary and accurate scientific language. Again, like what? Like low functioning, high functioning? Like calling [autism] a disease? You know, as your pal RFK does.
[Green continues to read from Singer’s paper]
“And advocate for policies that cause real harm to those who will not and cannot ever live independently.”
[Green]
Like what? What policies are we advocating for that cause harm? Aiming to improve the mental health and well-being of autistic adults? Is that causing harm?
You’re just saying stuff.
You’re just saying stuff.
If there was a policy, if there was actually a policy that, say like ASAN or something, were advocating for and trying to push through that had like a name that actually she saw that as harmful, she would not shut up about it. There would be links.
[Green continues to read from Singer’s paper]
“Only by returning to at least two separate diagnoses can we begin to meet the highly diverse needs of both groups.”
[Green]
Oh because we were doing so well before, weren’t we?
When was ASD? I think when I was a kid, it was Asperger’s Syndrome. So not that long ago. Were autistic people with high care needs better off in the 80s and 90s when they had their own diagnosis? Is that what you’re saying? Is there any evidence at all to back that up?
Because as far as I’m aware the only reason why there were two separate diagnoses is so that the autistic people could get sent away to be murdered by N**is. That’s why we got we got those that separate diagnosis of Asperger’s Syndrome is because Asperger noted that some of his autistic patients could be put to work instead of murdered.
So, is that what’s that helped them…? Did that help the people who went to be murdered? Is that…was that a benefit for them? I would say not but that’s just that’s just my radical leftist opinion there for you. I think better to not be murdered in general.
So mad. I’m so upset, I’m so tired.
This is not funny. I’m laughing because it’s absurd, but it’s not funny. There’s nothing about this that’s funny.
Even if you are fully in on “we need to cure autism we need to find out what is causing it and cure it” which I’m not, but if you are: Realistically, logically that would be identifying gene markers and doing prenatal screenings for that, which how does that help you and your family? How does that help families of profound autistic kids? In what way?
But the fact is that these organizations that they run have close connections to the ABA industry (and it is an industry, and it is a highly profitable industry, and it’s an incredibly powerful industry), and they are facing a PR crisis and I really do think that they are trying to manage that, as all the kids who had to go through ABA in the 80s 90s and 2000s are becoming adults, and speaking about it.
It’s like “Oh! It’s the neurodiversity mob!” but the assumption made by many relatives of autistic people with high care needs that we don’t have care needs, that we people like me, that we never engage in self-injurious behavior, but we just we have no idea what it must be like to engage in behavior like that like banging your head like pulling your hair behavior that may cause lasting injury—that we could not possibly ever understand.
You are dismissing our experience, you are reducing our experience, and you are trivializing our disability—and I can’t, I’m not going to try to ever to speak for all autistic people but I know that if Alison ever watches this, she will take one look at me and go “you’re one of them, you’re high functioning, you’re highly verbal, you are fine.”
And she’d be wrong. That’s why I don’t like watching meltdowns—because it brings back memories which are uncomfortable to sit with.
But we do, don’t we? We do feel like that because so often, every time we go to the doctors, every time we apply for benefits or accommodations, every time we want to access assessments tests or treatments, sometimes if we even so much as mention [autism] to a medical or psychiatric professional—heck sometimes even to our own family and friends, and heaven forbid you make some content about being disabled and it does numbers!
Like obviously you shouldn’t feel the need to justify your disability to strangers on the internet, but oh do those strangers on the internet love to pester you about it!
If we post content where our disability isn’t Visible, isn’t obvious, then we’re told it’s not there—but if you ever post a video where it is, show visual evidence of meltdowns of stims or repetitive behavior, anything where your autism is plain and obvious for all to see, well then you can expect to find yourself on R/FakeDisorderCringe by the end of the evening!
[Grievance autism parent C. Wall]
“So we’re gonna need late diagnosed women mostly white to sit down for a second. The one in 31 number is children it’s eight-year-olds eight-year-olds we’re talking about this is one in 31 in eight-year-olds this is not about you please stop talking for even half a second and stop making everything about you and let’s focus on the fact that this is affecting a great number of children and their services are not there they are not there for them because the neurodiversity movement is making autism not a disability and something to be celebrated so we have a crisis on our hands!”
[Green]
Why are these parents more angry with, and putting more scrutiny on, random disabled people online than on the massive organizations and governmental bodies which have actually been the ones failing disabled people and their families for decades?
Simply joining in along with the far right, along with those jerks on Reddit, along with the oppressive and gatekeeping systems that we already live under, to put even more pressure on already vulnerable people; it’s like that stand-up comedy bit!
[James Acaster]
“Oh yeah because you know, it’s been long overdue a challenge; the Trans community oh they’ve had their guard down for too long if you ask me. They’ll all be checking their privilege on the way home now thanks to you!”
[Green]
I saw one video recently, and I do believe it to be well intentioned, so I’m not going to show it—but it was somebody talking about their autistic relative, and about self-injurious behavior about how their relative hurts themselves quite often, and how it’s not right for low support needs autistic people to deny how harmful it can be—and that’s true, again if there are neurodiversity advocates out there denying that meltdowns exist denying that meltdowns and self-injurious behaviors are harmful, then point me at them. I will have a word, I will have more than one word!
But I don’t think that’s something that many people think. I think what’s more often the case is that autistic people are saying that these harmful behaviors are communicating distress, which needs to be resolved before we focus on changing the behavior.
And other people might respond to say that certain behaviors can’t be tolerated at all, because they’re so dangerous and finding the cause of the distress might take some time—especially if it’s a child who has communication difficulties. And both of these things can be true; the problem is we’ve gone a really, really long time without the causes of the behavior being in focus at all, and there are service providers out there right now working with autistic people, big ones, who really do not even attempt to find the cause of the distress, to find the reason for the behaviors.
I’ve been spending some time in ABA forums for research for another video, and there are some really dodgy institutions out there. No matter what you think about ABA, I think we can agree on this. And I think it’s fair that autistic adults might want to remind parents and practitioners sometimes that well-intentioned attempts to ease autistic distress might in fact make it worse.
The only way to learn about how to respond to an autistic person who’s in distress is to listen to autistic people who have been in distress. Autistic people can remember being a kid; they can remember how it felt to have to get up and go to school. They can remember why they acted out, why they would run away. Autistic people can tell you why they self-injure.
The thing that upsets me about that well-intentioned video that I saw was, that at the end, the person said something like “unless you have met people like this then you have absolutely no idea what it’s like.”
Alison and Jill and friends they’re also always banging on about how autistic self-advocates have no idea, no understanding, no ability to empathize with autistic people like the autistic people they know—and self-injury is their go-to, their main reason as to why we need to split the community, why the neurodiversity movement is distorting reality why autistic people being happy online is “romanticizing disability.”
I ended up watching a BBC documentary, because I was watching this video by the National Council on Severe Autism [The Truth About ECT, Part 1], and they were promoting this BBC documentary in which they were featured. The documentary was about parents who were subjecting their young children to hundreds of sessions [of ECT, or electroconvulsive therapy]—again something which is very illegal in lots of places—even in the USA the FDA does not recommend ECT for autistic people, and advises against all ECT for, I think, it’s under 13 year olds.
But at every opportunity, these parents showed the BBC guy photos and videos of their children all bruised and bloody. Graphic images of busted lips and bruises, videos of their children being cornered and restrained and lashing out. This was the justification: “No parent who witnesses their child hurting themselves would even question it and if you are, then you simply do not understand, you just simply have no idea what that must be like.”
[Autism grievance parent and NCSA board member Amy Lutz]
“I think that’s why for us ECT was not a hard decision you know so many people asked us well they asked us about when we sent Jonah to Kennedy Krieger when he was nine and when we ended up getting ECT later, wasn’t that such a hard decision? And for me it was, no, it was the only decision. So we went into it very enthusiastically because it provided some hope that we would be able to find something that might actually work after all these failed you know attempts.”
[Switches to Lutz in video conversation with another person]
“So I mean Jonah’s been doing it for a long time since he was like uh I think 11.”
[Other person]
“Yeah it’s almost 12 years!”
[Lutz]
“He’s almost 24 so yeah so it’s been a long time there was no doctor in Philadelphia area huge metropolitan area who would treat a child as young as he was Jonah has to go like like three or four times a month still like to maintain the benefits of ECT and that’s the really only real problem it’s, it’s you know you have to keep going!”
[Green]
I do have photographs of myself after self-injury. In fact, I had a meltdown a couple of weeks ago, and it was bad, and I hurt myself and I really wrestle with this a lot, but I’ve decided that I’m not going to show you the photos. I shouldn’t have to prove anything to strangers online, and these things are deeply personal and upsetting to dwell on.
But I do feel the need to point out that my ability to sit here in my own home, and read words that I have prepared to a camera, does not negate the fact that I am significantly disabled, and that I can empathize, at least a little bit. I know it’s not the same, but I can empathize a little bit with other autistic people who have also hurt themselves.
Alison says that for every autistic person applying for a job at Microsoft there’s another one who doesn’t even know what it is—and Alison, you know that most autistic people are not in employment. You know. Extremely few autistic people could work full time at Microsoft.
I couldn’t, and not just because I don’t know the first thing about software, but because I can’t even work full-time hours at this, I was literally just saying, and I also have hypermobile Ehlers-Danlos syndrome and POTS [Postural Orthostatic Tachycardia Syndrome], and I had to stand up to reset the camera, and triggered the POTS. Okay, um-huh. But no, Alison no, I can’t apply for jobs at Microsoft—not even to clean the toilets.
These are all things I’ve talked about, and I’m happy to talk about, but it just it pisses me off to see so many people dismissing people’s disabilities, dismissing strangers on the internet, judging, assuming what things they could and could not possibly understand.
That so many people, often people who aren’t even autistic themselves, who have no direct experience of meltdowns, of self-injury, of being unable to talk, of shutdowns where you can’t even move, not even a little bit, not even when your body is becoming stiff and painful and moving would relieve the pain: no lived, no direct experience of any of it, telling those who do that their experiences don’t count, that the things that they have learned over the years aren’t helpful, that unless two autistic people are exactly identical in presentation, that there can be no empathy between them, nothing there to learn.
[Grievance parent Cyndi Wall]
“When an adult with autism tells you that you’re doing things wrong and that you really need to be doing things differently and you need to be listening to autistic adults I just want you to think of one thing first I want you to think of this if they were acting like your child at your child’s age would they have gotten a diagnosis? A lot of these autistic adults that are demanding attention and reverence from parents and are speaking bad about parents they did not get a diagnosis because they were not acting like your child if they had been acting like your child, boy or girl, because girls were diagnosed as well, they would have gotten a diagnosis.”
“The issue is that the broadening of the diagnosis is called has caused what’s called diagnosis creep and so the diagnosis is expanding further and further out to include more and more and more and more people. Those that are commanding your attention most likely if they were diagnosed as an adult are not like your child.”
“The whole ‘listen to autistics’ is getting taken a little bit too far and I’m seeing a little bit too much berating of parents that somehow they don’t know what they’re doing so just remember that when you’re listening to an autistic adult that is late diagnosed, 90% of the time or more they didn’t have the issues that your child has when they were younger therefore their advice should be taken with a grain of salt.
“And I’m not saying don’t listen to autistic people I have listened to some autistic people and I have learned more about my son but to be honest they’ve all been early diagnosed like my son but their advice has come in a respectful way it has not been crammed down my throat and I have never been made to feel like I’m less than as a parent or that I’m making mistakes it’s always been a very cordial relationship. And so I have learned a lot from autistic adults so I would say seek out early diagnosed adults and ones that are willing to speak kindly and respectfully and respect your opinion as well.”
[Green]
They’re not just implying this, they’re stating it outright. But Cyndi, my love, any parent watching this: if their kid is a kid, they were assessed and diagnosed under the current criteria which you’re complaining about being too broad, and I don’t think that I should need to point out that you can’t judge someone’s childhood based on how you perceive them usually via social media as an adult.
I experienced meltdowns and self-injurious behaviors, but it was the ’90s and my mom had her own issues. I never even went to the doctor for checkups. If she was some middle class Californian lady, then maybe things would have been different.
In fact, I presented in many ways extremely similarly to an autistic relative who was diagnosed in early childhood—but you see, when I smashed furniture or refused to eat anything but steamed rice, when I shut down for entire days as a tiny child, it was usually just blamed on whatever: attention seeking and family issues and stuff.
But there’s no point in me trying to convince Cyndi here; she’ll only listen to autistic people who show her the kind of respect she doesn’t seem keen on reciprocating and, well, I don’t respect her. I struggle to respect anyone who is cheerleading for this man [photo of RFK Jr.]
But it’s wild to me that she demands a polite and respectful tone, from autistic people no less, before she will hear our words, while she sits in a—compared to other parents of kids with significant needs—a pretty privileged position as digital content coordinator for an organization the members of which are often cited as experts, almost always invited into mainstream autism discussions, even welcomed into the halls of power—and yet she still posts nonsense such as this she still posts lies such as this.
Here she is bemoaning a lack of diversity on the ASAN board, a board which contains people from a hugely diverse set of backgrounds, which does actually include and has included autistic people who can’t rely on speech for communication, a group which regularly holds listening sessions specifically for autistic people with intellectual and communication-based disabilities.
And look, I’m not saying that ASAN is perfect but come on! This is your group? [Photo of a NCSA board members, all of whom appear to be white adults without significant support needs, on the external steps of a building] Cyndi. Cyndi! There is no severe autism on this council, Cyndi! Cyndi, what are you talking about?
[Escher Tweet read aloud]
“…put DOGE on it. Big data and AI may make progress where traditional science has failed. What we really need is an article about Mr. Shatner’s epic intelligent Twitter battle against the neurocrazies mmmmm. These neurodiversity cultists have harassed me for years they are disgusting humans.”
[Escher]
“Sia has so completely capitulated to the neuromob it boggles my mind and it shouldn’t be that way it’s completely irrational! I mean this is like this bullying industrial complex that is winning! How cruel, the abject cruelty of it, it’s not just that they’re irrational it’s one thing to be irrational it’s one thing to say ‘Oh you know this film promotes violence against people of autism’ which is completely unhinged right, here ‘Sia is autistic no way girly produced the most insensitive autism depiction in a movie just to be autistic herself’ I’m not even sure what that means but that’s crazy and you know if you’re not prepared for this level of utter bs yeah, and you’re a sensitive person like Sia yeah, you can become suicidal—but now Sia has autism? Hey listen Sia has something, I’m sure, why do we have to call it autism?
[Escher Tweet read out loud]
“I don’t know what [slur] means but what a fabulous word!”
[Green]
No though, respect and diversity and stuff yeah! Look. Many different disabilities are heterogeneous in nature. Look at those advocacy groups I showed you; they’re made up of and represent many different kinds of people, people with completely different disabilities in cases—and yet they somehow manage to advocate for each other. Miraculously!
And you know these are people who repeatedly state that nothing they tried worked for their kid? Usually right before they exalt the benefits of weekly ECT forever and ever, or a full-time residency at this clinic they just so happen to be affiliated with. But if you’re so out of ideas except for all but the most extreme measures, then why would you tell other parents to close their ears to the vast majority of the community?
Parents can listen to different things and work out for themselves what to do, and if most autistic advice is so very unhelpful then the proof will surely be in the pudding, won’t it? And hey, what do you know, in the comments we see that even the most politest of advice from the autistic people, most alike your child should still be taken with a grain of salt and of course:
[Social media post from autistic adult]
“Adults with profound autism could not physically give you advice for your child. Low support needs need to stop giving unasked for advice and criticism for people with higher needs.”
[Response from parent]
“THANK YOU”
[Green]
So who should be listened to? Because it seems that much like Alison, Cyndi thinks the autistic people with high support needs can’t give advice, and that those with fewer needs shouldn’t, and of course that any autistic advice should be taken with a grain of salt and of course, of course, neurodiversity movement, bad!
So don’t listen to experts or parents who support that either! I’d like to think that parents take all parenting advice with at least a grain of salt, some consultation and careful thought, but i don’t see this lot throwing salt at their own advice; I see them lobbying the government to push their advice on everyone.
[Escher Tweet read aloud]
“Put DOGE on it!”
[Green]
I can see that parents might get upset when they’ve got a bunch of autistic people in their mentions, telling them that they’re parenting wrong; that’s gotta suck, and I know that some of those people can be rather blunt, rather unforgiving and harsh in their comments—but I don’t think that’s ubiquitous. There are neurodiversity forums designed specifically as advice forums for parents, full of autistic parents of autistic children who are happy to share resources and advice.
And we are a population which has been mistreated. Most of us are coming from a place where we were fundamentally misunderstood as children by our parents and teachers, some of us have been through ABA [therapy], have lived in facilities where they used restraints and training techniques, who are traumatized and afraid that other autistic kids might share their fate.
I don’t deny that there are misplaced and hurtful comments being thrown around, but I do think that they’re coming from a place of fear and trauma, just as a lot of the anger from parents is coming from a place of pain and desperation.
But so many of us know—like with every fiber of our being we know, because we’ve been there—that even with the best intentions, harm can still be done by completely loving parents just because they don’t understand what it’s like to be autistic, because they are listening to people who stand to profit from them.
Nobody should feel the need to justify their disability to strangers on the internet, and nobody should be dismissing the disability of strangers on the internet!
[Escher]
“I don’t know Sia I’ve listened to some of her music I’ve seen her film, I would never give her a diagnosis of autism! I’m sure she is quirky, we can kind of see that in her costumes and her songs, I’m sure that she is very sensitive, I’m sure that you know she had you know social anxiety like as a child, I’m sure all those things are true, but why in the world does that have to be labeled autism? What about another diagnosis? I mean is there anything in the DSM? I mean you guys are members of the APA right? The American Psychiatric Association, I mean like is there anything in the book that could be applied instead of autism? Some kind of personality disorder maybe a mix of sensory disorder and anxiety disorder or like, what?”
[Green]
I made a video about meltdowns where I described kind of what’s going on internally during that, and I’m going to keep bringing this up because this is a line of thought that I see way too often, is “You neurodiversity advocates on TikTok on YouTube, who are able to speak, you have no idea! You have no idea!” It doesn’t feel good though, to have to keep saying this stuff, but I do it because I am sick of this misinformation, I’m sick of this division this constant attempt to divide our community based on “Well you don’t do this behavior and they do that behavior!”
I don’t know how to conclude this, I’ve wound myself up! And I hope I’ve wound you up too! Leave a comment below to tell me how wound up you are! All right, bye.
[Green, in conclusion]
These are scary times. Scary times for the neurodiversity movement; it feels like we’re constantly being attacked, facing so many attempts at dividing us. It’s scary times for autistic people: it’s never nice for a marginalized group to be the focus of a far right administration, and of course, it’s scary for the families of autistic people.
I tried to do research into various things for this video, into like numerous different treatment options and things like that, and it is so hard! So hard to find reliable information, even reading from sort of mainstream established sources like the NHS or the FDA, it’s still really confusing,
I fell down so many rabbit holes, I was introduced to so many scams and snake oil salesmen and dodgy statistics and, like, this is my job! I don’t have a kid to take care of, I don’t have a boss, I have relatively very few responsibilities or demands on my time and I found it extremely frustrating! And I was doing this research for videos, for research purposes—not because I’m trying to desperately find care that my child needs!
There are so many groups and so many websites and so many official sounding people saying official sounding things: it’s a nightmare! And I do think that more could be done by Neurodiversity-based organizations to help people access good information, information that has been peer reviewed, and is evidence-based and all the rest of it.
We could do better. We could do more to help people who are drowning in a sea of good and bad information, without judging people for being unable to tell the good from the bad, because it’s not easy!
But also, the anecdotal evidence of those of us who do have lived experience of this stuff must be valued! Nothing about us without us! The scolding, dismissive nature of some parents and practitioners out there towards self-advocates is disgusting to me. Sneering at disabled people because you have judged their ability from afar, you are not helping anyone by doing that. You’re taking your frustration over a lack of support out on entirely the wrong people, on people who are also lacking support.
We are all scared, we are all hurting, we are all frustrated—but the neurodiversity movement and the wider disability rights movement in general is rooted in collectivism and solidarity and compassion.
Self-advocates can and should argue amongst ourselves, we must hold our movement and our representatives to account, but I think we need to remain united even in disagreement. We can and must improve our movement togetherm and while the neurodiversity movement might be relatively baby, she’s sitting on the shoulders of giants.
We owe everything to civil rights struggles which came before. We are all, in the end, fighting the same fight, all of our rights are human rights! We can learn a lot by looking back sometimes, back at struggles which succeeded, but also back at how things used to be back when a medicalist, behavior-first model dominated without challenge—and how dehumanizing, damaging, and dismissive it was for all neurodivergent, all disabled people.
Certain quite powerful people out there would love for you to think that it’s people like me who hold all the power, that autistic young adults on TikTok and YouTube are somehow holding all the cards against multi-billion dollar industries, long-standing institutions which are in receipt of government funding—heck even actual bloody governments themselves for f**ks sake.
It’s smoke and mirrors, don’t pay attention to the multi-billion dollar industry behind the curtain, and look at these mean tweets instead:
[Escher]
“There’s a lot going on in these little tweets!”
“Put DOGE on it!”
[a very funky hip hop beat]
[Green]
Thank you so very much for watching, this was a heavy topic and I’m proud of you.
