Nancy Gardner of East Bridgewater said she received a text from her adult son who has autism this week questioning whether she took Tylenol when pregnant.
Gardner says she told him she hadn’t during either of her two pregnancies that both resulted in sons, one with autism and one without. But she felt the question, prompted by an unusual presidential press conference earlier this week, was unsettling.
“I feel like there’s so much guilt put on us [mothers],” she said. “Autism is such a huge spectrum, right? So how could there be one little answer like that. I don’t know.”
Gardner’s son Jonathan told GBH News that he reached out to his mother after hearing Donald Trump warn pregnant women not to take the common painkiller.
The announcement has prompted mixed reactions from the local autism community and pushback from the medical establishment. Many, like Jonathan Gardner, say they are glad the announcement brought added attention to autism, but worry about misinformation.
“It brings awareness, but it also makes me a little nervous that we should not be looking for something to blame without data and proof,” said Gardner. “I would rather focus on how to make life better for autistic people and make sure we get the services we need.”
Julie Nolan, who lives in Melrose and has two sons in their 20s with autism, says she also welcomes more research into an explanation for why cases have increased in recent years.
“On the one hand — [Robert F. Kennedy Jr., the secretary of health and human services], focusing or wanting to understand why we have so many autistic children, hats off to him,” Nolan said. “I’m glad that autism is getting the attention …. finally. It was very lonely 22 years ago.”
But Nolan says she also believes that blaming autism on just one thing — pregnant women taking Tylenol — is oversimplifying a complex condition.
Officials from the Arc of Massachusetts, a Waltham-based nonprofit that advocates for people with intellectual and developmental disabilities, said that families and individuals with autism deserve more support from the government.
“Families, particularly mothers, deserve clear guidance rather than cycles of blame and guilt. All medical care decisions should be made between a patient and a physician,” chief executive Maura Sullivan said in a statement.
Sullivan also pointed out that the government should be focusing more on studies of potential treatments like leucovorin, sometimes given to cancer patients. On Monday, the U.S. Food and Drug Administration announced that it would start re-labeling the drug to treat some symptoms of autism.
The American Psychiatric Association said that more research is needed to consider the drug as a widely recommended treatment.
“It is essential that the administration prioritizes evidence-based support for individuals on the autism spectrum and invests in long-term comprehensive research about the disorder,” the association said in a statement. “It will require many more years of research before we know if leucovorin is an appropriate treatment for individuals with autism.”
In the meantime, Tina Zhu Xi Caruso, a local disability advocate who appeared on Netflix’s “Love on the Spectrum,” says she would like to see more of a focus on acceptance of neurodivergent people.
“So we can experience autistic joy,” Caruso said. “It’s not about curing autism. It’s about how to make an autistic’s life happier and more fulfilled.”
