What a week, or the autism roundup no one should have needed
Q: Should I be concerned if I have taken acetaminophen at any point during my pregnancy? A: No.
As Kirby shows us, we don’t need to start by negating their framing. We need to eat their framing and start from what is actually happening:
The White House autism announcement was a full-on eugenicist grift. It was exploitation of autism as a “threat,” all for money and to avoid further public humiliation over empty boasts. These bad actors have been at it for 20-plus years, and some of us have seen this repeatedly, with these same strategies from the same playbook. Blame those who give birth (specifically women) and call on them to suffer based on a manufactured fear about having an autistic child, all in the malevolent service of trying to prevent autistic people.
There is not a good way to sincerely address any claims made at the Big Boondoggling Autism Announcement in the name of science. Despite that, I saw a lot of tiptoeing and debate-think journalism in response. There were headlines that referred to “unproven“ links and “unfounded claims“ and “experts have doubts” (come on, Toronto Star) instead of just calling this announcement what it was. And I saw efforts to “acknowledge the uncertainty” and similar, as well. When a grifter flanked by two snake-oil salesmen lackeys points at two things and says that they're linked, the press doesn't have to attend to "nuance" and "uncertainty" because these are grifters making shit up. In our newsletter on the announcement, we made that framing clear – our heading was “The Big Autism Announcement Is A Big Pile of You-Know-What.”
Here’s another reason to stop talking about acetaminophen. Because actually? Nothing has changed. That part of the big announcement was all about RFK the Lesser trying to escape further discredit after bragging that he’d have the “cause of autism” pinned down by September. They especially leaned on one publication analyzing old data, convieniently published in August, to make this claim because they didn’t have anything else to use. And as I noted in this newsletter from a month ago, that report has a seriously COI’d senior author. Another author on the report told Politico that their findings led them to “recommend judicious use – the lowest effective dose for the shortest duration of time under medical guidance and supervision, tailored to the individual.”
That is what is already recommended and has been for years. Nothing has changed. In fact, things have changed so not at all that two of the men standing next to the occasional occupant of the White House directly contradicted claims made during the announcement — this same week. Marty Makary, head of the FDA, released a “notice to physicians” on the same day as the announcement to say that clinicians should keep doing what they’ve been doing and stating that “acetaminophen is the safest over-the-counter alternative in pregnancy among all analgesics and antipyretics; aspirin and ibuprofen have well-documented adverse impacts on the fetus.” Mehmet Oz told CBS later that week that “of course” pregnant people should take acetaminophen if their doctors advise them to do so. (He also seems to think that pregnant women take acetaminophen like breath mints because they’ve “stubbed a toe” or “have little aches and pains.” If there’s anything the press could have addressed with some clarity, it’s the fact that those of us who bear children generally think very carefully, ask our clinicians (when we get to have one) and everyone else we can find, and do a ton of research before we’ll even ingest microwave popcorn, much less before taking a medication.)
All of which is to say, the guidance around using acetaminophen during pregnancy has not changed. Nothing changed because the announcement wasn’t about evidence-based health policies – it was about grift and avoiding ridicule over an empty boast. With one sort of exception, I don’t recall any news reports directly grappling with those aspects of the matter.
What I do see is a cluster of the same creeps exploiting autistic people for grift and gain. Kennedy the Lesser is now genuinely pushing to add “autism” to the list of conditions in the Vaccine Injury Compensation Program listing. His advisor, seemingly like all of his advisors, has a dog in this hunt, per Politico: “Part of what Secretary Kennedy is doing right now — and with my help, and we have a team looking at it — is we have to figure out a way to capture these kids,” said Drew Downing, a longtime vaccine injury lawyer who’s now a senior HHS adviser.”
Even while stripping funding from such frivolous pursuits as cures for cancers, the administration is injecting $50 million for research to — yes, you guessed it – explore causes of autism. To echo something I posted on social media this week, here’s a challenge:
Try to defend, explain, or be “nuanced” about studies into “causes” or “cures” or “treatments” for autism or autism “risk” without diving into and drowning in the deepest of eugenicist waters.
Why are we still spending literal millions on this, instead of, say, research that autistic people have stated would be priority for them? Spoiler: Their priorities don’t include “causes” of their existence, which most of us already know arises from a sperm and egg fusing and a successful gestation and birth. But we are well into the third decade of researchers clearly grasping that there’s always a buck to be made in “studying the causes of autism.” Now there are $50 million more of them in the pipeline.
Adding to the ever-growing grifter list of Kennedy advisors is Mark Blaxill, who’s been hired on as a senior advisor at the CDC. Blaxill has long benefited from riding the antivaccine gravy train. That appears to be his sole credential for gaining Kennedy’s favor in this appointment, as he has zero other relevant qualifications. The intrepid-as-always Brandy Zadrozny at MSNBC has the full word on his (lack of) background and his likely landing place at the CDC. If we get many more blasts straight from the past like this one, I think we’ll have obtained definitive proof of wormholes, what with all of these worms crawling out of their holes again (that’s a mixed STEM metaphor, and I am willing to own it).
Also jumping on the train are those making calls for parents of autistic children to be able sue the makers of Tylenol, and those who have long been invested in peddling leucovorin-similar supplements to the same target population (and hilariously pretended to be “surprised” by the Big Boondoggling Announcement).
Meanwhile, outside of this Looking Glass country, experts globally have rejected the nonsense. CBS News published a roundup:
The European Medicines Agency, which tends to be quite the stickler about things, issued a statement saying, “Paracetamol [acetaminophen in the US] remains an important option to treat pain or fever in pregnant women … Our advice is based on a rigorous assessment of the available scientific data and we have found no evidence that taking paracetamol during pregnancy causes autism in children."
The UK’s national regulatory agency likewise said, “taking paracetamol during pregnancy remains safe.”
From Australia: “Robust scientific evidence shows no causal link between the use of paracetamol in pregnancy and autism or ADHD, with several large and reliable studies directly contradicting these claims.”
Spain’s Ministry of Health [link to post on X]: ”El paracetamol puede utilizarse durante el embarazo si existe necesidad clínica (por ejemplo, para dolor o fiebre).” [Paracetamol can be used during pregnancy if there is a clinical need, such as for pain or fever.”]
US professional clinician organizations echoed these statements. UT Southwestern Medical Center has a great, clear summary on its website for anyone with questions about using acetaminophen during pregnancy. The TL;DR from that summary:
Q: Should I be concerned if I have taken acetaminophen at any point during my pregnancy?
A: No.
And the autistic community has a word, too. The Autistic Self Advocacy Network released a statement condemning the administration’s assertions:
We are horrified by comments that call for ‘ending’ autism, a crude, yet plain, endorsement of eugenics demonstrating a callous lack of understanding of what autism is. … An HHS that does not further this understanding and provide accurate information to the President and the public to make safe, science-informed decisions puts the country at grave risk.
The Washington Post was a mixed bag, but they did run a piece on the reaction of the autism community and quoted one autistic parent of an autistic child as saying:
There are many times where I’ve been treated like a burden, and to hear [Trump], someone who is supposed to protect the people of this nation, say these things makes me feel unsafe … We’re not a disease, we’re people. We don’t need to ‘cure’ autism. We need to expand access to services.
STAT published a piece on the reaction of autistic mothers to the announcement, with autism research Mitzi Waltz of Vrije Universiteit Amsterdam commenting on the relevance of the “refrigerator mother” trope, noting that the term implies:
… that there’s actually nothing wrong with this child. They’ve been damaged by another adult, by their mother, so it’s a result of abuse — which implies that you can somehow fix it. We have never really gotten past that.
No, we have not. And as a reminder, the presence of autistic parents of autistic children supports what tons of evidence already shows: The biggest contributor to being autistic is having a parent who is autistic or has autistic traits. Not so many “fall far from the trees” when it comes to autism.
Finally, for your edification and amusement (and possibly to share with the “autistic people don’t have a sense of humor” crowd), here is a link to a thread of memes on BlueSky where users post that they are “Joining the war on autism … on the side of autism.”
News you can use
Apparently, it’s not enough to insist that pregnant people just grit their teeth through pain and fever. Now the administration is calling for parents not to give their children acetaminophen for fevers and, well, pain. What a time to be alive. And autistic. And a woman. Or a child.
Michigan Congresswoman Haley Stevens has announced her plan to introduce articles of impeachment against Robert F Kennedy the Lesser. Godspeed, Rep. Stevens.
A think tank on aging and autism? The United Nations is actually investing in something that could be useful for autistic people. The think tank will focus on community living and inclusive approaches to addressing the needs of older autistic people. Older autistic people will actually be included, along with family members, clinicians, and researchers with relevant expertise. Looking forward to seeing what this symposium, funded by the Nancy Lurie Marks Foundation, generates. One thing that gives us pause about the initiative, however, is the involvement of the Autism Research Institute, which states on its website that it’s supported the work of a key (allegedly very surprised!) figure in the current administration’s leucovorin claims and lists a lot of eyebrow-raising “environmental factors” as potential “causes” of autism in an extremely outdated summary, along with appearing favorable to ABA (applied behavioral analysis).
In other research with practical use for autistic people, here’s a study suggesting that bone health in autistic children could be compromised by factors that in turn could be addressed to prevent the issue. The findings were published in the Journal of Autism and Developmental Disorders.
And other efforts that could benefit autistic people – a call for more research into how adverse childhood experiences, or ACEs, may compound negative outcomes for autistic people. Given that autistic people are more likely to experience some ACEs, such as bullying, this work can’t come soon enough. The authors, publishing in the American Journal of Preventive Medicine, write: “In this work, we highlight … the need for an interdisciplinary approach to addressing the unique needs of this population, and present a call to action for policymakers and key stakeholders to invest in trauma-informed care in schools.” Yes, please.
People you should know
In the circus that was last week, many autistic people stepped up and pushed back. Among them are two of our favorite people: Eric Michael Garcia and Ari Ne’eman. Garcia is the Washington bureau chief for The Independent and author of We’re Not Broken: Changing the Autism Conversation. Ne’eman co-founded the Autistic Self Advocacy Network and is now an assistant professor at the Harvard School of Public Health. They both were tireless in their representation through the week of how all of these resources and energy could be better used and in pushing back against the passively eugenicist treatment of autistic people that pervaded much of the coverage.
Relevant from TPGA
Given these attempts to yet again generate fear about autistic people and then exploit that fear for gain, TGPA is re-upping a post from 2017 addressing first steps after an autism diagnosis:
After an Autism Diagnosis: 13 Necessary Next Steps For Parents — THINKING PERSON'S GUIDE TO AUTISM
If your child has recently been diagnosed with autism: Please learn from my own parenting mistakes, so you can be the parent your kid needs.
You also can find some of us commenting on the events of the week in a few places:
Shannon Rosa appeared on CNN’s “One Thing” podcast, where she noted:
The refrigerator mother theory of autism has been around for decades, blaming mothers for being cold and distant and causing autism in their kids. I can tell you the one thing that people haven't been talking about in this that I think is actually the most significant factor in having an autistic child is having autistic traits yourself or being autistic yourself.
She also commented for USA Today on Monday’s nonsense, saying:
It feels to me like we've regressed so horribly and intentionally by the administration, because as they've demonstrated constantly, they have no interest in actual science … They have no interest in research, they have no interest in the welfare of autistic people and their families. They are only interested in whatever people whispering into their ears have told them they should do.
I also commented for USA Today, in a different piece, and was quoted by way of this newsletter in Mother Jones’ coverage.
Bits and bobs
Vanderbilt University is hosting a Neurotech Frontiers Summit at its First Center for Autism and Innovation, October 10-12. They’re expecting to have speakers address their vision in particular about inclusive technology.
Thanks for reading, and may we always be on the side of autistic people.
Got something autism-related to share with us? Send it along to editorial@thinkingautism.com.
Got a comment? We’d love to hear from you, so drop us a line below. Please note that comments are moderated per TPGA guidelines.
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.