The staccato babble of a fussy baby and the distant chatter of a Ms. Rachel YouTube video blanketed the call as Dorothy Ackland recounted watching President Trump’s press conference on Monday, during which he said autism may be linked to Tylenol use during pregnancy and urged women not to take the drug.
“We’re going to save a lot of children from a tough life, really tough life,” said Trump.
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“I’m sitting there and I’m like, ‘Wait a minute, you’re gonna blame Tylenol and parents taking Tylenol?’” said Ackland, who has autism and gave birth to her fourth child two weeks ago. “Even if it was accurate, there are bigger dangers than being autistic.”
Ackland doesn’t remember whether she took Tylenol during her pregnancies and doesn’t yet know whether her kids have autism. But that’s not the point, she said. Parents, especially mothers, have regularly shouldered the blame for having a child with autism. The first psychiatrists to clinically define autism in the 1940s even coined a term to describe the emotional distance that they viewed as the culprit behind a child’s autism: refrigerator mother.
The term implies “that there’s actually nothing wrong with this child. They’ve been damaged by another adult, by their mother, so it’s a result of abuse — which implies that you can somehow fix it,” said Mitzi Waltz, an autism researcher at Vrije Universiteit Amsterdam. “We have never really gotten past that.”
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Scientists and the autism community eventually moved on from the myth of the refrigerator mother, but many autistic mothers see the words of Trump and other top health officials at Monday’s event as an unnecessary return to shaming parents for factors outside of their control, and felt demeaned by the significant mischaracterization of autistic people.
The vast preponderance of evidence suggests that autism is mainly genetic, not the result of parental indifference or Tylenol use or exposure to toxic chemicals. Nonetheless, health secretary Robert F. Kennedy Jr. has characterized the rising rates of autism in recent decades as having a “cataclysmic impact” on American children and pledged Monday that “patients and parents can prevent and reverse this alarming trend.” Many parents with autism disagree with the secretary’s underlying assumption that autism is “fixable,” or something that even needs fixing.
“The administration is lying to people. They are increasing stigma. They are presenting autism as this tragedy and devaluing the lives of autistic people,” said Jules Edwards, co-executive director of the Autistic Women & Nonbinary Network.
The press conference’s optics also struck Edwards. The announcement of a major shift in health care during pregnancy was made by the president and federal health agency heads — all men. “Misogyny is a heck of a beast,” said Edwards, especially Trump’s insistence that women “tough it out” with fevers and pain instead of taking acetaminophen, the active ingredient in Tylenol. Acetaminophen is critical during pregnancy because other pain relievers like ibuprofen and aspirin can increase the risk of miscarrying.
“The perception that women must behave a certain way in order to not be inferior is misogyny, just plain and simple,” said Edwards, an autistic woman, who said she did not take Tylenol when pregnant with her autistic child.
Trump’s insistence on “toughing it out” and that there are “no downsides” to not taking Tylenol were particularly tough for Jessica Cook to hear. The autistic woman did not take Tylenol during her three pregnancies, but she and her autistic husband have three autistic kids.
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“As a mom, from the second you are pregnant, everyone’s got an opinion, everyone’s got advice. You are constantly second guessing yourself. You are trying to be the best version of yourself that you can possibly be because these kiddos are relying upon you,” said Cook, the on-camera autism expert in Netflix’s series “Love on the Spectrum.”
Cook said the news conference and federal officials’ recommendations were particularly tough to swallow because it feels like people who are autistic have not played a part in the development of these policies.
Autism advocacy organizations have repeatedly asked Kennedy for a meeting to discuss their concerns with his rhetoric and advise federal health agencies about the needs of autistic people and the community, said Jennifer Cook, an autistic self-advocate and a board member of Autism Society of America.
“We have been met with deafening silence. Not even a response — silence,” she said.
Ackland was frustrated by the Trump administration’s failure to diligently review the science and actually help people with autism. “You’re not going to make autism disappear by not having everyone take Tylenol,” said the Nebraska woman, who sits on the state’s advisory committee for developmental disabilities. She welcomes more federal attention to improve the lives of autistic people.
“I’m not saying autism is fun. It’s not fun, it’s not enjoyable, it’s hard and difficult, and I would prefer not to have it,” she said. “But I do have it, and it is what it is. Everybody has challenges, and that’s not discounting any of the challenges I go through, it’s just the fact of life.”
Her genetics make her kids more likely to have autism. But it doesn’t matter, she said. “I have four kids and they’re wonderful and they’re perfect and I love them more than anything.”
STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.