President Donald Trump’s claim that Tylenol use causes autism has sparked concern within the medical community, and worry among mothers like Ashley Pope.
Pope, the president of the Autism Society of Ventura County and the mother of a 12-year-old son with autism, said that instead of focusing on trying to find a “cure,” autism needs to be better understood by the general public, and the government should be offering more services and support for families.
“I’m a firm believer that my child is not broken,” said Pope. “It’s the world that’s broken.”
Pope said it is discouraging to see the nation’s top health officials and president spreading information generally rejected by the medical community. Years of research have failed to indicate that acetaminophen, the main ingredient in Tylenol, causes autism. Major medical groups have denounced the Trump administration’s claim.
In a study published in the Journal of the American Medical Association, the use of acetaminophen during pregnancy was not associated with risks of intellectual disability, including autism, in children.
During a White House briefing Monday, Trump announced new U.S. Food and Drug Administration (FDA) regulations for acetaminophen products, such as Tylenol, which will include adding a safety label explaining the new found risks associated with its consumption.
“Don’t take it. There’s no downside to not taking it,” Trump said at the briefing, urging pregnant women to “tough it out” when in pain rather than using acetaminophen. “Fight like hell not to take it,” he said.
Julie Ann Dopheide, professor of clinical pharmacy at the USC Alfred E. Mann School of Pharmacy and Pharmaceutical Sciences, said fever and infections, which Tylenol is used to treat, would be more likely to cause harm to a baby in utero than consuming acetaminophen when pregnant.
“I think that it is frightening to hear the president tell pregnant women that Tylenol causes autism because it is not a substantiated claim,” Dopheide said, “and I think it leads to confusion and problems with pregnant women receiving the best healthcare that they can.”
Dopheide emphasized that when someone is making a decision regarding their health or the health of a loved one, the decision needs to be backed up by science. She recommends pregnant women consult with their doctors to better understand the risks of acetaminophen and if it would be acceptable for them to take the medication.
“I have been a pharmacist for 37 years now and it is the medicine that I recommend when a pregnant woman does need pain or fever control, to get a fever related to an infection under control,” Dopheide said.
The American College of Obstetricians and Gynecologists (ACOG) studied acetaminophen for over 20 years, finding it to be safe to take during pregnancy. The group says it is one of the only medications available for pain relief and fever treatment for pregnant women.
“It is highly unsettling that our federal health agencies are willing to make an announcement that will affect the health and well-being of millions of people without the backing of reliable data,” ACOG’s president, Steven J. Fleischman, said in an official statement on Monday.
Dopheide said autism is a diverse condition that affects people differently. Some youth are nonverbal, while others have “higher functioning” autism limited to sensory or communication issues.
“It’s important to understand that the causes of autism are very complex. There’s many factors that we’re aware of,” USC Chief Campus Health Officer Sarah Van Orman said.
Researchers have learned more about the autism spectrum disorder through the years. Dopheide said autism rates have increased significantly. According to Johns Hopkins University, autism diagnoses have increased by about 300% over the past 20 years.
Van Orman said the current rise in autism diagnoses could also be linked to how it is being diagnosed, as it has evolved in the past years. Van Orman urges people not to focus on a single cause without a sound scientific basis.
“It creates fear among individuals, it creates a sense of blame among people who maybe they took that medicine,” Van Orman said. “Then also it keeps us from continuing the really important work of understanding the causes and the treatment for autism.”
Pope said she is concerned about the mothers who are still grappling with the diagnosis, making her feel defensive and protective of parents who are new to the process or that might be wondering if they did something to cause their child’s autism.
“I would just tell [mothers of children with autism] to ignore the noise and keep on going and just live your life and celebrate your loved ones,” Pope said.
For Pope, it is heartbreaking to see the government tell mothers that autism is the result of a decision that they made, when science says otherwise, she said. Pope believes that autism is not something to be ashamed of, but something that can be amazing and beautiful.
“So much of the technology and the medical care that we have in this world is because we have the brilliant minds that autism created,” Pope said. “The greatest geniuses of our entire world have been on the autism spectrum.”