Arizona autism advocates call out ‘harmful rhetoric’ in Tylenol controversy

Acetaminophen, a leading American painkiller, is facing criticism from the Trump administration for its alleged link to causing autism when taken during pregnancy. There is no scientific proof to back the claim.

Acetaminophen has been America’s go-to painkiller for decades. Tossed into purses, diaper bags, backpacks and medicine cabinets, it’s long been trusted to ease fevers, headaches and muscle pain. Now, it faces unexpected criticism from the highest levels of government.

Last month, the Trump administration, including Health and Human Services Secretary Robert F. Kennedy Jr., linked the drug’s use during pregnancy to autism ,based, experts say, on misinterpreted research.

The fallout has included mothers of autistic children blaming themselves for their child’s diagnosis and renewed stigma toward people on the spectrum, said Kate Elliott, executive director of the Autism Society of Southern Arizona. The nonprofit organization, serving about 7,000 people per year, provides resources and social services to help empower those in the autism community.

“It was so frustrating, because Tylenol’s been studied through and through, and the correlation there is not causation,” Elliot said. “The way (RFK Jr.) was saying things, it really put the blame back on the mothers, saying they’ve done something wrong to harm their children.”

Kennedy acknowledged Wednesday he doesn’t have “sufficient” evidence that pregnant people’s use of Tylenol can cause autism in their children, USA Today and other media reported. “The causative association between Tylenol given in pregnancy and perinatal periods is not sufficient to say it definitely causes autism, but it is very suggestive,” Kennedy, who is not a doctor, told reporters.

Elliot, previously a social worker, joined the Autism Society about seven years ago when her daughter was diagnosed with autism. The National Institute of Mental Health defines autism spectrum disorder as a “neurological and developmental disorder that affects how people interact with others, communicate, learn and behave.”

The organization helped get her daughter diagnosed and provided resources for educational, governmental and therapeutic programs to help her understand autism to the fullest.

“That was the biggest thing for me, was just being able to find out all that new information on what I was supposed to be doing and what was available to me,” she said.

Since then, Elliott and her son have also been diagnosed with autism. Now, her mission has grown to supporting children, parents and undiagnosed adults to understand what being on the spectrum means and how to live fulfilling lives.

“Our mission is to create connections, empowering everyone in the autism community with the resources needed to live fully,” she said. “There’s this rhetoric that autism is bad, it’s a thing to get rid of, it’s a thing to protect our kids against, but I don’t want children to grow up thinking they’re bad or that their president thinks they’re not worthy.”

Elliott said the rhetoric being amplified by the Trump administration and the U.S. Department of Health and Human Services undermines her organization’s work to change that narrative.

“Autistic individuals are 10 times more likely to commit suicide than neurotypical individuals, and a huge part of that is social isolation,” she said. “Every autistic adult I’ve talked to, especially ones diagnosed as adults, said they have always felt like they were bad, and now we have a president reinforcing that? It’s extremely harmful.”

Dr. Sydney Rice, a University of Arizona professor of pediatrics who works on multidisciplinary teams supporting children with disabilities, said she’s seen a noticeable increase in guilt among mothers since the unsupported claim that taking Tylenol during pregnancy causes autism surfaced.

“I see children and their families with autism, and at this point it’s a lot of mothers feeling guilty that they might’ve taken Tylenol and might’ve caused their children’s autism,” Rice said. “The research does not support this claim and they should not feel guilty.”

The administration’s statements reflect a misunderstanding of autism and the data surrounding it, she said.

“There’s a concern that the incidents of autism are increasing, however, their basic premise is inaccurate,” she said.

CDC data shows there has been a higher rate of autism diagnoses, but it’s because the criteria to be diagnosed has evolved in the last few years, not because there are overall more people being born on the spectrum, Rice said.

“Having a diagnosis can, not for everyone, but it can help and qualify them for accommodations in work or school, so that they can be successful,” Rice said.

Rice also said that the studies being cited by federal officials were distorted in their interpretation. Many of those studies suggest that symptoms treated by acetaminophen, such as fever or infection during pregnancy, may themselves be factors associated with autism risk. They do not claim that acetaminophen causes autism.

“When a woman takes Tylenol, it’s likely that she’s ill, and maternal infection and maternal fever have been associated with a slight increase in autism,” Elliot said. “So the people who are more likely to take acetaminophen are the people who have an illness, and just the illness itself can cause that increase. The way they’re interpreting these studies is problematic.”

The American College of Obstetricians and Gynecologists released a statement on Sept. 22 affirming the safety and benefits of taking acetaminophen during pregnancy.

“Suggestions that acetaminophen use in pregnancy causes autism are not only highly concerning to clinicians but also irresponsible when considering the harmful and confusing message they send to pregnant patients, including those who may need to rely on this beneficial medicine during pregnancy,” ACOG President Steven J. Fleischman said in a statement. “The studies that are frequently pointed to as evidence of a causal relationship, including the latest systematic review released in August, include the same methodological limitations — for example, lack of a control for confounding factors or use of unreliable self-reported data — that are prevalent in the majority of studies on this topic.”

Local health organizations are echoing the group’s position.

Nathan Holaway, marketing and communications manager for El Rio Health, said the organization will continue to follow the medical community’s consensus.

“We will educate patients in that regard if asked,” he said.

For Elliott, though, the issue extends beyond the Tylenol debate. It’s about ensuring those on the spectrum are seen, respected and supported, not blamed for existing.

“It’s really important that we stand by our autistic friends and family and let them know that we support them and that they are good people,” she said. “We love them and we want them here.”