Cindy Sonne is cautiously hopeful people will soon better understand autism.
On Monday, the Orlando grandmother to a nonverbal 5-year-old with the most severe autism diagnosis, level 3, listened intently to President Donald Trump. She welcomes his pledge for more research when it comes to Autism Spectrum Disorder (ASD) and acetaminophen, the main ingredient in Tylenol, effect on prenatal babies and young children.
“I'm very hopeful,” Sonne said, who is also a board member of the Orlando chapter of the Autism Society of Florida, Inc. “ We just need to have more meaningful progress and understanding of these studies.”
The ASF shared Sonne’s sentiment, calling Trump’s press conference and the federal research “an important step forward, but not the end.”
“Our focus is on the quality of life of our loved ones and their families. We believe that is where funding should be directed to - better educational, healthcare, safety, and fitness resources for those living with autism,” ASF shared in a prepared statement.
On Monday, Trump said the National Institutes of Health will be giving $50 million in grants to 13 projects researching autism.
Causation or association?
Trump and Health Secretary Robert F. Kennedy addressed the nation, discussing connections between autism diagnoses and acetaminophen exposure to pregnant women.
The overall message of the press conference was a connection between autism and acetaminophen. While Trump never stated that acetaminophen caused ASD, his statements implied a significant connection and said that rising rates must be "artificially induced.”
“Taking Tylenol is not good,” Trump said, claiming a link between ASD and acetaminophen was clear. “Don’t take Tylenol… Fight like hell not to take it.”
Organizations like the American College of Obstetricians and Gynecologists advise pregnant women to use moderate doses of Tylenol to reduce fever symptoms.
Joining Trump in the presser was Marty Makary, the commissioner of the Food and Drug Administration. Makary said that science is always changing and that some research does show a causal connection.
“To quote the dean of the Harvard School of Public Health, there is a causal relationship between prenatal acetaminophen use and neurodevelopmental disorders of ADHD and autism spectrum disorder,” Makary said.
Although, according to an article released by the Harvard Crimson, Makary misquoted Dean Andrea Baccarelli, who said there was “the possibility of a causal relationship.”
The FDA released a physician's note on Monday for the use of acetaminophen during pregnancy, alerting users that there was evidence of an increased risk of ASD. However, it also stated:
“To be clear, while an association between acetaminophen and autism has been described in many studies, a causal relationship has not been established, and there are contrary studies in the scientific literature.”
The President also identified a link between ASD and vaccines, such as the MMR vaccines – mumps, measles, and rubella. Trump said that it was his personal feeling that no one should take the vaccines together, and should do so separately. Multiple organizations, such as the Centers for Disease Control and Prevention, state there are no links between the two.
Florida and autism
While many have been quick to criticize the president’s controversial statements, ASF acknowledged the move as progress for the ASD community.
“This inquiry not only reflects meaningful progress toward understanding root causes of autism but also underscores the importance of transparency and accountability by the pharmaceutical industry,” ASF said.
Florida is among the states with the most ASD diagnoses in the country. State data shows that in 2022, Florida’s ASD rate was 5.7 out of 100 children 3 to 17 years old. Nationally, the rate is 3.1.
Earlier, the Centers for Disease Control and Prevention released a study that indicated the rate of autism was increasing, showing 1 in 31 children had been diagnosed in 2022 – a stark jump from 2002, when the rate was 1 in 150. Critics have stated the increased rate is likely due to a better recognition of ASD symptoms, said Dr. Brian Lee of Drexel University.
What researchers are saying
Lee co-authored a study released last year that focused on how prenatal medication use affects children's neurodevelopmental outcomes. The study observed 2.5 million pregnancies in Sweden and followed the mothers and the children for up to 20 years.
Lee and fellow researchers examined several groups, including babies who were exposed to acetaminophen users versus non-users, and found a slight statistical increase in the risk of autism and ADHD. But the correlation was not a causation, the study revealed, as accounting for familial genetics painted a different picture.
“Autism is a highly heritable condition,” Lee said. For example, if one twin in a pair is diagnosed with autism, there is a high chance (although not a 100% guarantee) that both twins will have autism, Lee said.
When taking genetics into account and then observing acetaminophen users versus non-users, researchers found acetaminophen exposure played no role in autism diagnoses.
“The apparent risk completely flatlined and disappeared. In other words, there was no increase in risk of autism or ADHD associated with acetaminophen use,” Lee said. “And what that told us was that familial confounding factors such as maternal genetics were likely explaining the apparent statistical association.”
Lee said that while his research doesn’t explain a connection between acetaminophen and ASD, scientists won’t rule it out completely, either. Instead, he believes the study acknowledges that complex disorders are made up of a variety of factors, such as genetics and the environment.
“The joint contributions of these two are something that hasn't been necessarily well-studied,” he said.
Despite Trump’s steadfastness on acetaminophen and other artificial sources, Cindy Sonne feels as though there must be more than just one reason for rising rates.
“One of my concerns is, you look at cancer, and there are several factors that cause cancer. It's not one thing,” she said. “I'm very hopeful. But we'll see what happens when there are more studies and more medical guidance out.”
