An Indiana woman with an autistic son says President Donald Trump was blaming moms when he made unfounded claims that taking Tylenol while pregnant causes autism.
A Kentucky woman diagnosed with the condition as an adult thought Trump was villainizing autism by describing it as a “horrible, horrible crisis.”
A Massachusetts man whose twin boys have profound autism found the Republican president’s words hopeful because it was the first time the father had seen autism discussed at the highest levels of government.
Recent comments about autism by the Republican president and others in his administration are rippling through the United States, stirring up a wide range of views and feelings among autistic people and their families. Some welcome the renewed focus and pledges of research money for the complex developmental condition. Others are outraged by what they consider the blaming, shaming and spreading claims not grounded in science.
On Monday, Trump repeatedly warned pregnant women not to take Tylenol, known by the generic name acetaminophen, and he fueled discredited claims about autism and vaccines. Some studies have raised the possibility that taking acetaminophen in pregnancy might be associated with a risk of autism. Many others, however, have not found a connection and no causal link has been proved.
Meantime, scientists stress that concerns that vaccines could be linked to autism have been long debunked. A fraudulent study claiming a link between the measles, mumps and rubella vaccine was later retracted by the journal that published it. Science has shown autism is mostly rooted in genetics.
Pushback on blaming mothers, villaining autism
Dr. Noa Sterling, an OB-GYN, said Trump’s comments, particularly about Tylenol, touched a nerve for many parents of young autistic children.
“There’s this kind of narrative that you have to be careful of absolutely everything you do in pregnancy, and if you eat the wrong thing or do the wrong thing, you’re going to irreparably harm your baby,” she said. “So the Tylenol just plays directly into this fear that, ‘I’ve taken something that has caused this condition in my child.’”
Dani Derner, who has a 4-year-old autistic son, said it is “really disappointing” that women are being blamed.
“I personally did not take Tylenol during my pregnancy,” said Derner, of Dripping Springs, Texas. But, she said, “some women might not have a choice.”
Some women said the blaming was reminiscent of the disproven mid-20th century theory that emotionally cold “refrigerator mothers” caused autism.
“When I heard that he said acetaminophen was the cause, I was a little scared and a little sad because as a mom of a child with autism, I felt like maybe I was being blamed for that,” said Rachel Deaton of Fishers, Indiana, who has a 22-year-old autistic son. “We really don’t know what causes autism.”
Kelly Sue Milano of Fullerton, California, who has an autistic son, added: “A lot of responsibility and at times criticism is placed on mothers, I think, in a really unbalanced and unfair way.”
Some autistic people recoiled at the notion that autism is something to cure.
“It is part of who we are,” said Dani Bowman, CEO of DaniMation Entertainment and a cast member of “Love on the Spectrum.” “My mom never took Tylenol while she was pregnant with me or my sister. My dad has autism. My sister has autism. I have autism.”
Katy Thurman, a legal assistant in Lexington, Kentucky, who was diagnosed with autism as an adult, grew angry at the concept of eradicating autism.
“There are actual crises going on in this country. People being autistic is not one of them,” Thurman said.
Addressing profound autism
Others were encouraged by the attention on the developmental disorder.
“We need a voice at the table and we have to do something,” said Matt Murphy of Ayer, Massachusetts, who has twin 8-year-old boys with profound autism. “That’s the hopeful thing I take out of this -– finally, the top level of government is talking about this.”
He said people with profound autism will need lifetime support, and federal and state governments will need to take action in many areas, including education and housing. Murphy is glad to see federal money going toward research into autism’s causes.
“Even if you find the cause … we still have the current population that we need to support and address and help,” he said.
Deaton, who has an adult autistic son, agrees, but worries about federal cuts affecting things such as Medicaid and special education. Those help autistic people contribute to society, get jobs and be taxpayers, she said.
Judith Ursitti leads the Profound Autism Alliance and was among a group of people who met with the director of the National Institutes of Health in June. She said hearing the term “profound autism” in a White House event was validating and she was pleased with the list of research being funded.
But Ursitti, mother of a 22-year-old son with autism, realizes that people on other parts of the autism spectrum found some of the language hurtful and that others in her community were outraged because they believe moms were being blamed.
Ursitti also said some of the discussion was confusing, including the failure to tease out profound autism from other parts of the spectrum when mentioning the statistic that 1 in about 31 children is affected by autism spectrum disorder in the U.S.
“The vast majority of people with autism don’t fall into that profound category,” she said.
She said reactions to comments made at the White House were in some ways as diverse as the autism community itself.
“There’s a divide that’s quite similar to what we’re seeing in our country, honestly,” she said.
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Associated Press video journalists River Zhang and Nathan Ellgren in Washington and Obed Lamy in Indianapolis contributed to this report.
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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
