“To say autism needs curing is the wrong message” – how misleading claims cause harm
Written by Leila Hawkins
Photo by Austin Kirk / CC BY 2.0
Before his announcement warning that taking Tylenol during pregnancy increases the risk of autism in children, US President Donald Trump called it “one of the most important news conferences I’ll ever have”. This may have been the most accurate statement he made that day, if only because of the global avalanche of reactions it triggered.
Its purpose was to announce changes to medical guidance on Tylenol (the brand name for paracetamol) in the US, but the claim prompted health agencies and governments around the world to quickly issue statements saying there is no conclusive scientific evidence linking its use during pregnancy to autism. Local health providers followed, after doctors reported a surge in panicked calls from expectant mothers. Trump’s advice for women to avoid taking the drug unless they “can’t tough it out” angered many, who took to social media to call it yet another attack on their bodily autonomy, while simultaneously making them feel they are at fault. Meanwhile, the autism community responded by labelling the claims “myths” and “pseudo-science”, voicing fears that they would stigmatise autism as an undesirable illness that must be prevented at all costs.
What is behind the claims?
It is the latest in a long line of claims around the causes of autism that have lingered for decades. In its statement announcing that labels for Tylenol and other similar painkillers would be changing, the Food and Drug Administration (FDA) cited studies that found an “association” between the use of paracetamol by pregnant women and an increased risk of autism and ADHD. However it also noted that “a causal relationship has not been established” – in other words, that it hadn’t found a direct cause-and-effect link between the two.
The press release issued by the White House took a more dramatic tone, referring to an “autism epidemic”. It quoted a statement by Dr Andrea Baccarelli, dean of the faculty at Harvard T.H. Chan School of Public Health, saying that his team found evidence of an association between “exposure to acetaminophen during pregnancy and increased incidence of neurodevelopmental disorders in children.” But his full statement also says it remains an important medicine for pregnant women to treat pain and fever, recommending it still be used but at low doses –– an important note the White House left out.
Baccarelli, who co-authored one of the studies referenced by the White House, was paid $150,000 to serve as an expert witness during a class action lawsuit against Kenvue, the maker of Tylenol (this is disclosed in the paper). The federal judge dismissed his testimony because the “discussion in his reports is incomplete, unbalanced and at times misleading. In general, Dr Baccarelli downplays those studies that undercut his causation thesis and emphasises those that align with his thesis.” Baccarelli reportedly met with Health and Human Services Secretary Robert F. Kennedy Jr a few weeks before the announcement.
What do the studies tell us?
We asked Dr Katherine Hall, Assistant Professor in Psychology, Child Development and Education at Coventry University in England what truth there is in the claims. “While some of these review papers have concluded that there is a link, the problem is that if you look a bit more deeply at the studies they themselves have selected, they’re not particularly methodologically sound,” she explains.
This paper published by the American College of Obstetricians and Gynaecologists in December 2024 reviewed some of the leading studies on the link between paracetamol and autism – including one quoted in the FDA’s statement – and found significant flaws, including not accounting for family risk. “Autism is a neurodevelopmental disorder – or I prefer the term neurodevelopmental difference” Hall says. “It’s got a strong genetic component to it and quite often these studies fail to screen for whether anyone else in the family and previous generations had autism.
“When studies do look at this as a controlling variable, then the connection between paracetamol and autism tends to disappear, because that genetic risk is a stronger predictor of whether a child will go on to develop autism than whether or not they’ve been exposed to paracetamol.”
Additionally, the dosage of paracetamol is an important factor, but Hall explains that the data on this isn’t reliable as it’s based on mothers remembering how much they took during pregnancy and childbirth. Some studies focused on mothers prescribed paracetamol after surgery or an infection, but didn’t take into account the underlying causes, or whether they were taking other medication at the time. And another issue Hall points out is that the papers don’t accurately capture autism, which is a spectrum of symptoms that can vary significantly in each child. “Instead they define children as having autism if they have some kind of developmental delay or language difficulties. But that’s not an expert clinical diagnosis of autism, which takes observations over a long time.”
“When you look back at these papers it’s difficult to reliably conclude that they definitely have a sample where the mother took paracetamol and the child definitely meets the criteria for autism,” she says. “We need to look at these things a bit more when we make these claims.”
Why paracetamol?
If there isn’t a definitive causal link, why has the US government seized on this particular drug? “There is no real reason why [Trump] necessarily would have picked up on this as a specific risk factor because there are others,” Hall says. “A good example are SSRIs like antidepressants.”
“There is a similar level of evidence to suggest that women who take SSRIs during pregnancy are at greater risk of having children who might go on to develop autism. These studies are similarly flawed, but they also don’t take into account that there are lots of other underlying risk factors that the person may take SSRIs for, like stress, anxiety, or depression.”
Is there an “autism epidemic”?
Multiple sources show that diagnoses of autism have risen significantly over time. Hall says this is likely due to greater awareness and more diagnostic methods, but that ultimately it’s hard to be certain. “Whenever you have a neurodevelopmental difference there’ll be a collection of risk factors on one side, and protective factors pushing the other way. And depending on the balance, you may or may not tip the scale.
“Now, whether or not we live in a society where we’re exposed to more risk factors like greater prescription of SSRIs or being exposed to more chemicals, it would be very, very difficult to be able to isolate all of these different risk factors and do research to ascertain whether or not it’s got a direct cause. And this is the problem, you’re only ever going to be talking about a correlation, not causation. It’s that direct link that we’re missing because in no ethically sound world would we ever sit pregnant women down, expose them to these substances, and then later on measure whether they’ve had an impact on their unborn child.”
The impact of the claims
During his press conference Trump reasoned that “the meteoric rise in autism is among the most alarming public health events in history.” Additionally, the official White House press release seemed to preempt the backlash by prefacing its advice with, “Predictably, the Fake News immediately went into frenzied hyperventilation with their usual smears, distortions, and lies.”
“The bit that concerns me most is that there might be young mothers out there, and parents and carers of children who have autism that are reading these headlines and worrying or blaming themselves,” Hall says.
“With any kind of psychological or scientific research it’s always likely that you’re going to find some papers that say yes there is a connection, and some papers that say no. The best thing news outlets can do is research, think critically, and put out what is the most medically sound advice.”
The language used by the US government is also problematic because it frames autism as an epidemic that needs eradicating. “Neurodiversity is a superpower. Obviously, it comes with challenges if you’re parenting a child that has significant needs,” Hall says. But ultimately we need these neurodiverse brains to solve the biggest questions in society. Neurodiverse individuals become excellent business people, they become revolutionary thinkers, they’re artists, they’re creative people, they’re really visual.
“To present this idea that autism is something that we need to cure is absolutely the wrong message.”
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