Autism And Tylenol: Thoughts After The Press Conference

Autism And Tylenol: Thoughts After The Press Conference

Autism And Tylenol: Thoughts After The Press Conference

The press conference on Monday at the White House that announced a possible link between the use of Tylenol (acetaminophen) and autism spectrum disorder was anticipated by some, and dreaded by others.

For those who missed it, and have more than an hour to spend watching the entire presser, it can be seen here (the actual event begins at 48:35):

For those who don’t have an hour to spend watching, here is a partial recap of what was said.

Speaking from the Roosevelt Room today, President Donald J. Trump and U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. announced bold new actions to confront the nation’s autism spectrum disorder (ASD) epidemic, which has surged nearly 400% since 2000 and now affects 1 in 31 American children.  “For too long, families have been left without answers or options as autism rates have soared,” Secretary Kennedy said.

“Today, we are taking bold action—opening the door to the first FDA-recognized treatment pathway, informing doctors and families about potential risks, and investing in groundbreaking research. We will follow the science, restore trust, and deliver hope to millions of American families.”  

First, the U.S. Food and Drug Administration (FDA) will act on a potential treatment for speech-related deficits associated with ASD. The FDA today is publishing a Federal Register notice outlining a label update for leucovorin for cerebral folate deficiency, which has been associated with autism. This action establishes the first FDA-recognized therapeutic for children with cerebral folate deficiency and autistic symptoms.   

The change will authorize treatment for children with ASD, with continued use if children show language, social, or adaptive gains. Following the label update for ASD, state Medicaid programs will be able to cover leucovorin for the indication of ASD, in partnership with the Centers for Medicare & Medicaid Services (CMS). Finally, the National Institutes of Health (NIH) will launch confirmatory trials and new research into the impact of leucovorin including safety studies.  

While promising, it is important to note that leucovorin is not a cure for ASD and may only lead to improvements in speech-related deficits for a subset of children with ASD. Furthermore, this treatment must be administered under close medical supervision and in conjunction with other non-pharmacological approaches for children with ASD (e.g., behavioral therapy). 

Second, HHS will act on acetaminophen. Today, the FDA will issue a physician notice and begin the process to initiate a safety label change for acetaminophen (Tylenol and similar products). HHS will launch a nationwide public service campaign to inform families and protect public health.  

The FDA is responding to prior clinical and laboratory studies that suggest a potential association between acetaminophen use during pregnancy and adverse neurodevelopmental outcomes. FDA also recognizes that there are contrary studies showing no association and that there can be risks for untreated fever in pregnancy, both for the mother and fetus.  

Given the conflicting literature and lack of clear causal evidence, HHS wants to encourage clinicians to exercise their best judgment in use of acetaminophen for fevers and pain in pregnancy by prescribing the lowest effective dose for the shortest duration when treatment is required. Furthermore, FDA recognizes that acetaminophen is often the only tool for fevers and pain in pregnancy, as other alternatives (e.g., NSAIDs) have well documented adverse effects. FDA is partnering with manufacturers to update labeling and drive new research to safeguard mothers, children, and families.

Third, NIH today is announcing the recipients of the Autism Data Science Initiative (ADSI), funding 13 projects totaling more than $50 million to transform autism research. ADSI integrates large-scale biological, clinical, and behavioral data with an exposomics approach that examines environmental, nutritional, medical, and social factors alongside genetics.

Projects employ advanced methods such as machine learning and organoid models, address both children and adults across the lifespan, and establish replication hubs to ensure rigor. Each project includes community engagement to align research with the needs of autistic individuals, families, and clinicians.

Now, if you didn’t watch the whole presser, and only focused on what traditional media and social media said, you would have thought that the entire event centered around the Tylenol announcement. That, of course, is because it is the most controversial and attention-grabbing issue of the presser. An FDA-approved treatment to deal with a specific deficiency? Okay. More money for research projects? Boring. A possible link between the use of Tylenol and autism spectrum disorder? Cue all the headlines!!!

As I have stated previously, I am personally invested when it comes to autism spectrum disorder and scientific research. I’ve also been observing the debate and reaction from multiple corners of the internet since the press conference. So here, in no particular order, are my reactions.

1) Autism existed before Tylenol.
Let’s just get that one out of the way. The first formal autism diagnosis is historically acknowledged to have occurred in 1943. However, the signs and cases of autism have existed throughout history (for an excellent narrative of the history of autism, I highly recommend the late Steve Silberman’s book NeuroTribes). Acetaminophen was first synthesized in 1878, but did not become commercially available over the counter until over a decade after the first autism diagnosis (Tylenol, the brand, was introduced in 1955 and acquired by Johnson & Johnson in 1959).

2) The studies cited do not show a causal link between autism and acetaminophen.
Now, the claim by the Trump administration is not that acetaminophen DOES cause autism, but that it MIGHT be “associated” with autism. There are two studies out there that have looked at this; one is a Swedish study published in 2024, the other a Japanese study published earlier this month. The Swedish study states that:

Acetaminophen use during pregnancy was not associated with children’s risk of autism, ADHD, or intellectual disability in sibling control analysis. This suggests that associations observed in other models may have been attributable to familial confounding.

The Japanese study states:

Although PS(propensity score)-matched analyses indicated small increases in risk, sensitivity analyses suggested that unmeasured confounding, misclassification and other biases may partially explain these associations.

The bottom line? The most recent scientific research does not support the statement that using acetaminophen causes autism, and the “association” link is tenuous at best, and disappeared completely when sibling controls were used.

3) President Trump is not a doctor.
If you haven’t noticed, President Trump particularly loves getting the credit for solving problems. This is why he has been so successful in making peace deals. It brings to mind the reported Teddy Roosevelt quote from his time negotiating the Treaty of Portsmouth (which ended the Russo-Japanese War in 1905, and for which Roosevelt won the Nobel Peace Prize):

“It’s a mighty good thing for Russia, and a mighty good thing for Japan, a mighty good thing for me, too!”

Trump is always looking for the next “mighty good thing” for him, as well. If he thinks that Tylenol might be causing autism, and believes everything sterotypically “severe” about autism, then he is going to pounce on that idea like a dog with a steak bone, and nothing is going to convince him to give that up. This is not to excuse the president, but to explain him. He’s been in national politics for over ten years now; this is how he functions.

4) RFK Jr. is not a doctor, either.
I have much less patience with RFK Jr. than I do with President Trump. RFK got what he wanted from his Trump endorsement, which was becoming HHS Secretary. While some elements of his “MAHA” campaign are perfectly acceptable and commendable (no one is arguing about fighting childhood obesity, for instance), his crusade against autism has been long marked with controversy (at best) and lies (at worst). I don’t doubt that RFK genuinely wants to know what causes autism. I do doubt that he is going to find his magical needle in the haystack by pointing at Tylenol as the cause, and he undermines his own limited credibility every single time he insists he’s got the needle, while over-generalizing people who have autism.

5) The doctors in the administration need to speak up.
It is interesting that the actual medical doctors who were involved in the Trump White House presser were significantly less gung-ho about the announcements involved. In fact, Dr. Oz, who is the Centers for Medicare & Medicaid Services administrator, has hedged quite a bit in the days after the presser.

Oz — a former surgeon and television personality who leads the Centers for Medicare and Medicaid Services, an agency that is under the Department of Health and Human Services — said that if a pregnant woman develops a high fever, a doctor will likely encourage her to take acetaminophen, the active ingredient in Tylenol, because fevers can pose health risks. And studies show acetaminophen is the safest medication to treat fevers in pregnant women.

“The concern here is that I believe most women get low-grade fevers, they stub their toe, they have little aches and pains, and they think it’s perfectly safe to throw a couple paracetamol or acetaminophen or Tylenol when they’re pregnant, and I don’t think that’s the case,” Oz said.

But Oz was clear that patients should consult their doctors first before making a decision.

“The Tylenol issue is whether or not we should warn moms, who are pregnant today, about a problem that we may not know fully the answer to — ‘Is Tylenol a problem during pregnancy?’ — for another five years,” Oz said. “Well, what about the kid today? Are you going to take the Tylenol or not. Well I think the answer is, the best prudent answer, of course take it if a doctor says you need it. But don’t take it on your own without thinking twice about it.”

Tylenol itself discourages its use (for legal reasons) during pregnancy, which means that, like any other drug, it should be taken in consultation with a doctor, even when pregnant. Using it during pregnancy may be absolutely necessary, and the Trump administration putting out the warnings does not ban it from either purchase or use.

6) Women overdosing on Tylenol on social media to “own” Trump are stupid.
For the love of all that is holy, don’t do this.


Overdosing on acetaminophen is a real thing, and just because a drug is available over the counter does NOT mean that you should be taking it for no good reason than just to make a social media post. Acetaminophen is a drug, and just because it is “safer” than some other drugs available doesn’t mean that it can’t be abused. If you want your critiques of this policy to be taken seriously, then deliberately taking more than a recommended dose for no good reason except to film yourself doing it is the way to prove that you are absolutely NOT serious.

7) Those with high-functioning autism cannot speak for those who are low-functioning or severe.
Any time the debate over autism causes comes up, we have to go over this again. There are known genetic causes of autism. When the question of environmental factors come up, though, those who are high-functioning take much more offense.
https://twitter.com/writelikederp/status/1970696611929170047
If a medical trial started by the FDA to measure the effects of leucovorin (also known as folinic acid) on those with severe autism speech issues shows improvement, then what is the harm? Folic acid is already recommended as a prenatal supplement in order to prevent brain and spinal cord defects. But with the media covering it as a treatment or “cure” for autism, those who are higher functioning start to freak out. No one is going to make you take something you don’t want to take. Likewise, if a parent with a severely autistic child is approved for this study, who are you to tell them “no”?

8) Let all the research happen without fear or favor.
No mother wants to think that they knowingly or unknowingly caused their child’s autism. It took decades to debunk and destigmatize mothers of autistic children from the crackpot “refrigerator mother” theory. It is understandable that parents, like me, don’t want to think about “just how much Tylenol did I take while I was pregnant?” It’s a stressor that does no one any good, especially when your child has already been diagnosed. With that being said, research can and should be supported. My own kids have been involved in research studies at our local university regarding autism and brain development. There is so much we don’t understand about how the human brain works. I just had this conversation with my own kids regarding a family member having a joint replaced, pointing out that you can have an artificial joint, you can have an organ transplant of the heart, liver, lungs, kidneys – but there is no replacement for the human brain. Neuroscience is an ever-expanding field, and we would be doing ourselves a disservice by not researching autism because we might be afraid of what we find.

To sum up – everyone has opinions, no one actually has answers. A recommendation for pregnant mothers to consult with their doctor before taking acetaminophen is hardly the end of medical independence, or a sign that the administration has run roughshod over medical opinion. A FDA study of one therapeutic that may lead to some improvements in some children is not exactly a “cure.” And more research should be encouraged, not feared. In the meantime, those of us who live in autism world will keep on doing what we do best – loving our kids and getting them what they need to be the best version of themselves, one day at a time.

Featured image via Vacho on Pixabay, cropped, Pixabay license

Written by

3 Comments
  • KimH says:

    Deanna, this is an excellent article.

    As a retired speech-language pathologist, I’ve seen the diagnostic criteria for autism expand dramatically over the decades. Yet not one of those doctors who participated in the panel (yes, I watched the whole thing) acknowledged this, or they brushed it off. Instead panel was spearheaded by two people — Donald Trump and RFK Jr. — who were looking to advance their preferred theory: linking acetaminophen (Tylenol) to autism.

    Later I watched as Dr. Marty Makary in a TV interview tell a host, who had asked him about the expanded criteria for autism as a source of elevated numbers, say that no, he didn’t think that was the reason why the incidence is higher. Makary also told Scripps News that he doesn’t believe autism is genetic. He was falling in line with the Trump-Kennedy playbook.

    I used to admire Dr. Makary for his bold stance opposing Covid lockdowns. But no longer.

    When I began training as an undergraduate, autism was linked with childhood schizophrenia. We learned the differential diagnosis between the two conditions. There was also discussion of the “refrigerator mother” theory proposed by Leo Kanner in the early 1940s, although it had become discredited. It was discussed in a more historical context.

    At the time the criteria for labeling a child as autistic was extremely narrow, and autism was regarded as very rare. However, the diagnosis has expanded rapidly over the decades. Asperger’s wasn’t even a thing until the 1990s, and it seems to be on-again, off-again as far as being on the spectrum. (What is it now? I’ve been retired for a few years.)

    I have sometimes wondered if some of the language-impaired kiddos I saw at the beginning of my career (late 70s, early 80s) would’ve been placed on the spectrum today. The kids that were labeled as “EMH” or “TMH” or those diagnosed with childhood aphasia — I wonder how they would be labeled now?

    But no one on the panel acknowledged that. They wanted to blame acetaminophen — a word which Trump couldn’t even pronounce. Yet he had no problem advising women to not take it for fever, just “tough it out.” Just imagine the moms out there with children on the autism spectrum who had taken acetaminophen during their pregnancies. Think of the enormous guilt they may be feeling after hearing that nonsense. Or maybe they should “tough that out” too.

    Trump is a business man who got into politics. RFK Jr. is an attorney who founded the Children’s Health Defense, which sounds all pro-kid’s health until you learn that it’s an anti-vaccine organization. I highly doubt that either one ever took a course in research design or neurological disorders, yet here they were, flogging their preferred “cause” of autism while highly trained researchers haven’t been able to determine it over decades of serious study.

    I took a research design class in graduate school (along classes on statistics; anatomy and physiology; acoustics; and neurology). While these classes were geared towards speech-language pathology, the research model we studied is the same clinical model used in any medical research. And while I’ve forgotten most of what I ever learned, one thing I firmly believe is this: that good research is scary complicated, and it takes a very long time. RFK Jr. and Donald Trump do NOT understand in the least how true research works. The doctors backing them on that panel should be ashamed of themselves, but I would bet they don’t want to run afoul of DJT for fear of his wrath. So they stood silently, giving tacit support to a disgraceful press conference headed by two fools who have no idea of what they’re talking about. Yes, I said it. Sorry, not sorry.

  • NTSOG says:

    I began working with autistics in 1976 until I retired in 2016. I probably met about 2000 autistics, children and adults, in that time. Back in 1976 under DSM III Infantile Autism was defined in very tight terms and the signs had to be seen early in the development of children. For years I worked with children who met the DSM III criteria that essentially stipulated children were born autistic, but also children and teenagers who functioned the same as children diagnosed with Infantile Autism, but who ‘became’ autistic after trauma such as Acquired Brain Injury either perinatally or after birth. This included one lad who had ingested large amounts of lead in his first three years by eating old lead-based paint of the walls in the slum housing in which he was raised in Chicago. I did much work with children born totally blind who also ‘became’ autistic. [Indeed the rate of reported autistic features/autism in children born totally blind was reported back in the 1970s by Fraiberg and Freeman – The Psychoanalytic Study of the Child – as about 20%!] Though we managed such children exactly as though they were classically autistic we could not, for funding purposes, label them as Autistic as they did not meet the DSM III criteria. With DSM IV the criteria ‘opened’ somewhat and we started to report such children as Autistic per se for funding purposes. Asperger’s Syndrome [AS] confused the situation somewhat as lay people presumed that Aspies were the ‘smart ones’. Of course DSM IV said nothing about intellectual level in regard to AS. Over the years I had a number of AS clients with Full Scale IQs in the 40s-50s; they were definitely mentally retarded. Now under DSM V there is only Autism which makes great sense to me.

    Childhood Schizophrenia was an alternate diagnosis when I was studying in the 1970s. [Back in the mid-1970s I read Axline’s book ‘Dibs in search of Self’. Her techniques influenced my practice with abused/withdrawn autistics in institutions.] Later – 1982 onwards – I worked as a specialist in behaviour in several of the old residential institutions for the mentally retarded in Australia. Those places were full of autistics, either undiagnosed or diagnosed as schizophrenic. I also worked in special schools back in the 1970s-’80 and saw many children considered EMH or TMH who were clearly undiagnosed autistics.

    As for “Makary also told Scripps News that he doesn’t believe autism is genetic.” Then how come I know a number of client families with parents who are autistic as are their children? I and my brother are autistic as is a nephew – all of us descended down the paternal line in the family, through my father. As for Bruno Bettelheim the less said the better.

    A problem is that a developmental condition, once barely known to the general public, has become front and centre in the public eye so every one has an opinion regardless of them having little or no clinical knowledge. In part Hollywood did not help with Rainman and also Bruce Willis in Mercury Rising … and then there are the politicians .

    I’m glad I’m retired.

  • LibraryGryffon says:

    I too fully believe autism, as it is currently defined, is genetic. My elder child has an official ASD diagnosis (but would have been an Aspie if diagnosed 10 years earlier). Her father and maternal grandfather would also have been diagnosed with Asperger’s if it had been a thing when they were in school.

    I don’t use Tylenol since for me it does less than a sugar pill. But I wouldn’t be surprised if it might turn out to affect gene expression in some instances, making an ASD diagnosis at least slightly more likely.

    I do really wish we could see a comparison of autism rates between say 1960 and today using the same diagnostic criteria, so that we are comparing apples to apples, rather than the 1960 apples to the 2025 fruit basket.

Leave a Reply

Your email address will not be published. Required fields are marked *

Subscribe
Become a Victory Girl!

Are you interested in writing for Victory Girls? If you’d like to blog about politics and current events from a conservative POV, send us a writing sample here.
Ava Gardner
gisonboat
rovin_readhead