Damn, what a fortnight…
Prelude: Administrators at BlueSky took it upon themselves to ban Łink, autistic Black man, space lawyer, and much-appreciated, much-needed user, ostensibly because he accurately described an image in his alt-text. Anyone paying attention thinks otherwise, as explained in a Medium post by one very observant user:
That same day, Bluesky permanently banned a Black space lawyer, social justice advocate, and long-time community builder without warning or cause. The likely reason? His criticism of the CEO’s recent decision to follow a well-known transphobe flagged by the Follow Tracker labeller. A justification was manufactured after the fact based on a two-week-old skeet that did not violate Bluesky’s terms of service.
If you’re on BlueSky, consider calling on the admins to reinstate Łink. It’s petty and racist and racistly petty of them to ban this man while they let certain active bigots and parties guilty of actual felonies and war crimes maintain a presence there.
Damn, what a fortnight
As the current administration continues to try to destroy everything that might be useful for autistic and other disabled people, writing full-length analyses of it all would make this newsletter go on forever. So instead, for this newsletter, I bring you a roundup I’m calling, “damn, what a fortnight.”
I previously highlighted reporting from ProPublica that the current administration had summarily clawed back public school funding of supports for deafblind students. ProPublica is now reporting that the Department of Education (DoE) – a currently flaming misnomer if ever there was one – is restoring the funding, sort of:
Programs then appealed to the Education Department to retain their funding, but the appeals were denied. Last week, the National Center on Deafblindness, the parent organization of the agencies that were denied, told the four programs that the Education Department had provided it with additional grant money and the center was passing it on to them.
When the funding was canceled, the programs were in the middle of a five-year grant that was expected to continue through September 2028. The funding from the center is only for one year.
Meanwhile, special education programs in public schools are facing a total evisceration. In an unprecedented act (as most of them are), the current administration has laid off most employees in the DoE’s special education office as a “reduction in force” they’re enacting during a government shutdown. According to Sara Luterman’s reporting at The 19th News, this decision was explicitly intended as a partisan revenge tactic. Per the occasional occupant of the Oval Office, the move was “part of cuts to ‘Democrat programs that we were opposed to.’”
The 7.3 million children supported by these services probably would be surprised to know that their needs are strictly a “Democrat” issue. And that it’s this simple to ignore federal laws establishing that all children in this country have a right to a free and appropriate educated in the least restrictive conditions.
Currently, these layoffs and thousands of others are on pause under a federal judge’s emergency order. As for some non-Democrat parents whose children are under threat from these reckless, unconsidered decisions, Luterman reports, the responses range from denial to hopefulness (about what, one wonders) to a sense of betrayal (you think?). Many parents seem misinformed, mistakenly believing that the special education role has been moved to the Department of Health and Human Services, which it has not, and which would require an act of Congress. Given how little Congress is acting on anything, it’s surprising that they think it’s even a possibility.
Some conservative parents also seem to believe that the federal workforce is (or was) “bloated,” which data do not support. The Cato Institute has reported that three departments dominate increases in the federal labor force since 2001: Defense, Department of Homeland Security, and the VA. As for the DoE, it’s not even in the top-10 government employers with the most employees. Furthermore it’s netted a few thousand added workers in the last quarter century, and during that time frame, the number of children slated for special education services in this country has climbed from 6 million to almost 8 million (that’s a 33% increase) and is predicted to climb by another million in the next few years.
The Autistic Self-Advocacy Network has published a statement condemning this vengeance tactic on the part of the current administration. They say:
We call on Congress to reverse these layoffs and protect education for disabled students. Please contact your elected officials and urge them to speak out against these cuts. You can learn how to contact your elected officials here. You can also use this tool from the Disability Rights Education and Defense Fund (DREDF) to quickly and easily send a message to your elected officials about this issue.
And now on to the dark fantasies of RFK the Lesser: He has added circumcision to the list of things for which he wants to manufacture proof as a cause of autism. Scientific American cites experts calling the studies RFK the Lesser cites in this regard as “truly appalling.”
Meanwhile, we’ve gone from 15% of respondents in a poll endorsing belief in the Tylenol bullshit to 4% who endorse their belief that it is “definitely true” that Tylenol use during pregnancy is linked to the odds a child will be autistic. The way things are in this country, that seems like a good-sized win, so good work, America. It’s important to give praise where it’s earned.
In the endless game of whac-a-mole that the news media likes to play when it comes to autistic people, we have a new batch of journalists who apparently just budded yesterday like fresh, pink gullible little roses with only an instantaneous sense of time. This week’s example is a piece that claims that “new autism data challenge long-held assumptions,” which could be intriguing, I guess, but then: Those “long-held assumptions” apparently are that there’s a “single underlying cause” of autism.
That’s an “assumption” that, to the best of my pretty damned accurate historical recall, tens of thousands of my own words written over two decades, and seemingly infinite studies of autism-related genetics, would never have come to any attentive mind at any point in time during this century. That is, unless your mind is that of a desperately flailing, flop-sweating federal health director who made a reckless promise a few months ago to name a single “cause” of autism and then pulled Tylenol out of his nethers in a desperate Hail Mary. Only the most ignorant, uninformed, or self-committed people have ever thought that autism “had a single cause” during the last quarter century. Indeed, I wrote just last week about how research so clearly shows that a multiplicity of pathways can lead to the shared traits autistic people have.
Another easy-reach subject of coverage for the lazy outlet is to drag in – again – the “question” of whether “autism is an epidemic.” The fact that the term “epidemic” applies to disease and that autism isn’t a disease notwithstanding, this “question” has been asked and answered and asked and answered and asked and answered so many times over the last 20 years that we need to start wondering whether or not some of these journalists can conduct a basic internet search. The answers are there! They haven’t changed! The evidence has only become stronger! Stop asking – or pretending to ask – this question because all it does is harm autistic people by making them look like an epidemic disease! TYSM
News you can use
- A study published in Molecular Psychiatry links specific congenital “malformations” and the odds a child will have autism. The only type of “malformation” that survive a lot of statistical adjustment in the study was related to genitalia to those assigned male at birth, and then in a looser analysis, some cardiovascular-related anomalies only in those assigned female at birth. The authors note that it’s often not especially straightforward to detect anatomic differences in the pelvic region of those assigned female at birth until the age of puberty reveals them, so it’s possible that these associations are more generalized. This study focused on mathematical relationships only, but certainly one potential common pathway could relate to connective tissue differences.
- Researchers publishing in Pediatric Neurology have found that pediatric neurologists don’t seem to be especially well-informed about motor delays and motor-planning issues that are common among autistic children. That seems odd to me, as certainly this was known decades ago and has long been much-discussed — it is often what funnels a child into evaluations in the first place. It certainly would be good to see some work focused on the association of these features with spoken communication difficulties autistic people can have. The authors even say that “Motor concerns are just as, if not more, common as verbal language deficits and cognitive impairments” in autistic children, but don’t seem to connect motor function to speaking.
- Speaking of motor differences, those of us with resting b!tch face can attest to the fact that we don’t all make the same facial expressions to reflect the same emotions. That’s why it’s not great to see a story about how “AI will change how we quantify pain” (MIT Tech Review, but it’s paywalled, so that saves you the trouble), with that “quantify” part based on an AI device detecting facial motor responses that communicate pain. The assumption is that all humans make the same pain faces. The people flogging this particular app are making comparisons between their claimed precision in pain detection to precision measures of things like blood pressure. As you probably know, blood pressure measurement is a basic snapshot of arterial pressure, not a measure of the behavior of thousands of muscle fibers in our faces of varying degrees of responsiveness and subject to fluctuating neuroendocrine signals and other inputs that may subtly or dramatically modify their magnitude. And you know what? We don’t all make the same faces, pain or not. Really. Just ask any autistic woman who’s ever had a complete stranger tell her, when she was perfectly relaxed and supremely happy, to “smile.”
- Speaking of speaking and motor differences, this new study out in Nature Communications, offers a glimpse at a promising route to a “neural prosthesis” for people who have speech and language disorders.
At TPGA
What Should Sex Ed for Autistic People Look Like?
Let me Hyperfixate That For You: Fergus Murray, Monotropism, And "Weird Pride"
People you should know
- We’ve featured Ari Ne’eman here before – he’s a long-time autistic advocate and an assistant professor of Health Policy and Management at the Harvard T.H. Chan School of Public Health – but we’re mentioning him again today because of his keynote speech on “operationalizing neurodiversity” at the recent Stanford Neurodiversity Summit 2025. You can watch the entire keynote (or read the transcript), but he had two main points when it comes to considering interventions for autistic people:
First, is the intention of the intervention unrelated to an autistic person’s somehow “passing” as non-autistic? It should not be about “passing” and instead should have a non–passing-related goal. And Ne’eman warns that there can be no “smuggling” of a “passing” aim – such as forced eye contact – into a non-passing aim, such as being able to communicate successfully.
The second main point is to ask, What is the least burdensome way achieve this goal? Ne’eman highlights that the answer to this question necessarily is extremely personal and individual and not an answer that common “one-size-fits-all” outcome measures in support plans, for example, will give.
In his closing, Ne’eman notes that “civil rights practice is fundamentally about who has to change.” The current expectation, he says, is that “autistic people have to change” but that turning to specific work that addresses the potential harms of current services to autistic people, “we can build a better world.”
- Jason Jacoby Lee had something to say in response to a New York Times piece on “profound autism” that I’ve already dealt with in a previous newsletter. Lee wrote into the Grey Lady with his two cents regarding that segregationist, misleading, dangerous label. I’ve reproduced his letter here for those who understandably to not have a subscription to that outlet.
I am one of these so-called profoundly autistic people this article describes. I cannot utter meaningful speech, and as a result, I was branded for years as someone with an intellectual disability and an I.Q. of 40. All this time, however, I understood everything that was going on around me. I just could not show it to others because of my deranged relationship with my own body.
I am concerned about the creation of a separate category, called profound autism, for those of us with the most severe disabilities. There are real differences between the sort of autism that I have and so-called Asperger’s syndrome. But it does not help us at all to impose a hierarchy of lower and higher functioning. We need to figure out how to tap into the skills and insights of those of us who cannot talk, who make up anywhere from 25 percent to 40 percent of the autistic community, depending on the estimate.
For me, the way out of this dilemma was learning to communicate by typing. I suddenly went from being seen as intellectually impaired to taking college classes. I was never low-functioning, and neither are my autistic brothers and sisters without the ability to speak. I was just misjudged and ignored, and I fear that my fate will be the fate of many others termed low functioning in this new schema.
Jason Jacoby Lee
New York
Thanks for reading, and here’s to continued work on building a better world.
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About the Author
Dr. Emily Willingham is a 2022 MIT Knight Science Project Fellow, and the author of several books, including the upcoming If Your Adolescent Has Autism: An Essential Resource for Parents from Oxford University Press, and has served as a regular contributor to Scientific American and other national publications.