Pregnancy pain relief blamed, again | Autistic DJ makes Coldplay interesting
Is exposure to acetaminophen in utero linked to being autistic? How many autistic people care about this question?
Is exposure to acetaminophen in utero linked to being autistic?
How many autistic people care about this question?
Probably … none?
Who knows because who’s asking autistic people?
How many times can researchers address this question?
Lots of times, but not that often with any new information. The latest study to claim a link between acetaminophen and autism doesn’t generate new data or even involve a new quantitative analysis. The authors conducted a “qualitative” review of existing studies, using a structured format. It’s among many publications to rely on already-published work, which leads to the question of why people keep asking this question, keep using the same studies to answer it, and keep coming up with different answers. I have a hypothesis, which you’ll find if you read on.
Before going on, though, I want to note that this most recent report, which made the headlines the way these things do, has an important citation error and a senior author whose declared conflict of interest is that he has served as an “expert witness for the plaintiff’s legal team on matters of general causation involving acetaminophen use during pregnancy and its potential links to neurodevelopmental disorders.”
Just to refresh my memory a bit about the research landscape on this question, I conducted a straightforward database search using the terms “autism” and “acetaminophen” (which also cross-references with “paracetamol,” as it’s known outside the US). Excluding studies of rodents or other nonhuman animals, this search showed that a whole lot of publications, especially those claiming a link, are reviews of existing studies. These publications did not involve generation of new data and often didn’t include any new quantitative analysis, and many are in, let’s say, “controversial” journals.
The number of studies with original analyses is rather scanty, results are mixed, and the most recent of these, published in 2024 in JAMA, concluded that “Acetaminophen use during pregnancy was not associated with children’s risk of autism, ADHD, or intellectual disability in sibling control analyses. This suggests that associations observed in other models may have been attributable to confounding.”
Most authors of these studies note limitations that include the potential for “confounding” that the JAMA authors highlight. Confounding is the possibility that some unknown factor common to needing pain relief in pregnancy and to having an autistic child makes them look directly linked. Instead of being linked to each other, though, they’re both linked to that common factor.
There are lots of possible candidates for such factors.
Interesting to me, given the well-established overlap between hypermobility and autism and the also well-established genetic contribution to both, not one autism-related study of pain relievers in pregnancy seems to have examined diagnoses of hypermobility-related conditions in parents or children.
This question strikes me as important because during pregnancy, hormones lead to increased “stretchiness” of the connective tissues that hold our muscles, bones, and joints where they belong. For someone with a hypermobility-related condition, who likely already experiences increased pain, this effect of pregnancy would exacerbate it. Indeed, the Hypermobility Syndromes Association says as much: “There may be an increase in the level of pain experienced, spinal and joint pain in particular, during the course of the pregnancy.” During pregnancy, options for pain relief are extremely limited, but they include acetaminophen.
As always is the case, if researchers asking the questions weren’t interested in medicalizing autism and demonizing drugs, we’d probably be addressing questions more relevant to autistic people and orienting research away from erasing them by “reducing risk” that they’ll develop in the first place.
News you can use
- Wow! Here’s an entire issue of the journal Autism on shifting to the “social model” of disability as a way to transform autism research – ahem, acetaminophen obsessives – and instead focus on “disability as a product of societal barriers and inaccessible environments, rather than manifestations of individual deficits.” The issue features perspectives and analyses on barriers to inclusion, education, community involvement, and autistic-led research. The editors of this special issue write that it is both “a tribute and a challenge: a tribute to the activists, researchers and community members who have paved the way for more inclusive and justice-oriented research, and a challenge for the field to go further.”
- Different people can say the same word differently. An example might be “species,” which some people say using an “s” sound and some say using the “sh” sound. To understand a new speaker, a listener may unconsciously use what they know about words in that language to sort out the speaker’s meaning. This fine-tuning requires understanding the social context and processing what is being heard. A study published in Autism Research suggests that autistic people can make these adjustments just as well as non-autistic people.
- The word “sample” to describe research participants is not optimal, but still: These authors call for a greater research focus on autistic people with high-support needs in studies of multisensory integration. They refer, in part, to autistic people who also have intellectual disability or seizures, whom they say are underrepresented in studies.
- Paul Knoepfler, professor of cell biology and human anatomy at UC Davis School of Medicine, is a longtime monitor of all things stem cell research. He writes at The Transmitter that researchers need to “push back on the sometimes market-driven hype about stem cells for autism.” Part of his concern is that parents of autistic children might buy into the hype from for-profit clinics and others around umbilical cord cell infusions and other stem cell–based “treatments” for autism. He writes, “I urge special caution for families considering paying for this kind of intervention for their kids. It’s likely to do more harm than any good—if it does anything at all.”
- Have you heard of or participated in discussions about “pathological demand avoidance” (PDA), which is sometimes used to try to explain behaviors of autistic people? Whether you have or not, check out this thoughtful take from Emily Paige Ballou over at her long-running (15 years!) Chavisory blog. Ballou writes, “The problem with the label of PDA isn’t that it’s unnecessarily pathologizing or dehumanizing (although it is); it’s that it’s obscuring the fact that an autistic child obsessively avoiding a task or request probably has some kind of fundamental difficulty with that task.”
- A University of Calgary researcher whose autistic son is nonspeaking has developed an augmented and virtual reality headset that lets users see letters for words they’d like to use and “tap” them to communicate. He says that “the goal of the project is to build around the participant’s abilities and develop or adapt technology to provide seamless, expressive communication tools to the non-verbal community so they can communicate effortlessly.” Some of it sounds pretty cool – an autistic user who really likes the color blue can make the entire virtual world that color. But it’s tough to tell how something like this would work for autistic people who, say, don’t like wearing things on their heads, or how some people might use it to impose rules rather than allow freedom of expression.
New at TPGA
- Back next week!
People you should know
- The “most brutally honest farmer” in Britain was also diagnosed as autistic in his mid-60s. In this wide-ranging, long Guardian profile of Guy Singh-Watson, he talks diagnosis, vegetarianism, politics, and how it felt to learn he was autistic: “‘It made me feel all the more that I don’t have to live by other people’s rules,’ he says. ‘I’m different – so what? I find it really difficult to understand how people are able to just lie so easily, and to serve their own ends.’”
- Relatable: Autistic ornithologist, author, and activist Seán Ronayne talks at The Gloss about what made him feel different as an (undiagnosed) autistic child: “What was fascinating to me were the birds flying outside the window and the insects buzzing around our flower meadows. I couldn’t understand why other kids weren’t interested in that.” Also relatable: “I find humans complicated and stressful. I don’t meet anyone for coffee or to hang out. The person I contact the most is also autistic and also into birds; he’s the one I speak to the most because we’re mirror images of one another.”
- Writing books about an openly autistic protagonist (who also is an accidental detective) helped author Brandy Schillace with her own “coming out” as autistic, she tells the Washington Post. Her second novel featuring autistic detective Jo Jones is “The Dead Come to Stay.” Schillace talked with TPGA almost exactly a year ago about her first fiction outing with Jo Jones, “The Framed Women of Ardemore House.”
- AJ Murphy is an autistic, highly successful 18-year-old DJ from Liverpool who lived the DJ dream when he got called to the stage during a show by global juggernaut Coldplay (I know). Coldplay’s Chris Martin selected Murphy from a sea of fans at Wembley Stadium and complimented the teen’s incredibly attention-getting signage, which included LED lighting. In response to a question from Martin, Murphy requested that the band play “Trouble,” and as he sat at the piano, Murphy was overcome with emotion. His local newspaper, the Liverpool Echo, wrote up the moment and described the crowd response as “enraptured.”
Bits and bobs
- A thing I did not know until this week is that in Ireland, girls could not be diagnosed with ADHD until the year 2014. I learned that while reading in the Irish Independent about the launch of the country’s first-ever neurodiversity training for driving instructors.
- If you’re someone who watches the show “Love on the Spectrum” (I hear mixed things), then you’re someone who might enjoy this Deadline Q&A with the show’s co-creator, Cian O’Clery. He talks a bit about how the show is filmed and gives a little preview of season 4.
- Here’s a ProPublica article about the current US federal plans around autism research, yet the entire focus is the meandering effort to find environmental causes, with a context that is relentlessly medicalizing of autism. I’m a fan of this outlet’s work, but they’ve expended a huge amount of time and effort here on someone in autism research who’s “never paid much attention to [Robert F.] Kennedy [Jr] — or to politics.”
- The language in this piece at The Conversation by Amina Yousaf, associate head of Early Childhood Studies at the University of Guelph-Humber, flops around some on the use of “neurodiverse” and “neurodivergent” (which may have been an editorial issue). But the message of the benefits of universal design comes through, beyond the Canadian context the essay addresses: “Designing classrooms for cognitive and sensory differences from the start ensures all children, especially those from racialized and underserved communities, feel like they belong and can thrive.”
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More of this, please! An autism-friendly opening at the Museum of Natural History, Oxford, promises relaxed exploration in a quiet environment. Can we get that, well, everywhere?
Thanks for reading, and here’s to relaxed explorations in a quiet environment.
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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.