Jennifer Cook is perhaps best known as a dating expert for the hit Netflix series Love on the Spectrum, which chronicles the travails of autistic adults as they navigate the dating world. But Cook is herself autistic — and a mother to three autistic kids.
That’s why she was shocked when President Donald Trump pegged the use of acetaminophen, commonly known as Tylenol, by pregnant women and children as a major cause of autism.
“I’ve had to have conversations with my kids and, thank God, I’ve had enough loving conversations with them over the years that it seems that it was unnecessary,” she told The Independent.
“But, you know, just say to them, ‘Hey, look, just — by the way — you know you didn’t, you didn’t do anything wrong just by being.’”
At the same time, for Cook and so many other autistic women, Trump’s words — along with those of Secretary of Health and Human Services Robert F. Kennedy Jr. and Food and Drug Administration Commissioner Marty Makary — felt at once marginalizing and as if they were being blamed.
“He didn’t really talk about adults, just babies and children, right,” Cook said. “ I mean, it’s as if we don’t exist.”
Autistic women have long been invisible. Girls are diagnosed at a much lower rate and many women only receive a diagnosis after their children are diagnosed, as was the case with Cook.
“In the ‘80s and the ‘90s, because, you know, especially diagnoses for girls, especially black girls, was not necessarily popularized or fully understood or accessible because, we were very much misdiagnosed with maybe, anxiety, or ADHD or it was kind of like, a comorbid type of like space,” Jennifer White-Johnson, a Black autistic mom of an autistic son who lives in Baltimore, told The Independent.
“Our family’s story has been very much rooted in, ‘OK, well, I’m going to create the world and the space of existence, that maybe I felt that I didn’t always have from my community growing up,’” she said. “ So you’re not going to tell me that I basically have to shut that off, that I have to force my child to unlearn every avenue of freedom and liberation in their lives.”
For many autistic women, getting a diagnosis offered clarity for how they see themselves.
“It gave me a whole new perspective on my behaviors and quirks that I have,” Charlotte Cravins, 37, who lives in Louisiana and has a one-and-a-half year-old son with Down Syndrome whom she plans to get screened for autism.
“It’s, in a lot of ways, it’s benefited me and makes me a better advocate,” she told The Independent. “It just puts more pressure on us and more blame on us and what and the things we do when it’s not even our fault.”
It is unclear how many autistic adults live in the United States, let alone how many autistic women give birth on an annual basis. But the data that do exist show that autistic women with nausea and pain more than their non-autistic counterparts.
Many autistic women experience elevated levels of joint ypermobility, which means that autistic women likely need to take medicine like Tylenol. Samantha Crane, an autistic disability rights lawyer who lives in the Washington, D.C. area, had hypermobility and needed to take Tylenol to relieve her pain.
“I started having pretty serious hip pain, even before I had started gaining extra weight to the point where just walking a few blocks was very painful, yeah,” she told The Independent.
“It was the only thing I could take when it got really bad, and if I hadn’t been able to take painkillers, I mean, I probably would have been more or less on bed rest, which has its own health consequences.”
The evidence so far for a link between autism and Tylenol is tangential at best, with many flagging how the correlation does not mean causation. Another major study in Sweden showed no link between the two.
“My mom told me she did not take Tylenol when she was pregnant with me,” Kristi Lai, who lives in El Paso, Texas, said. “I didn’t take Tylenol either.”
Lai fears the intense focus on Tylenol or causes will take away resources from assisting autistic people.
“Autistic people need resources,” she said. “Those of us with autistic kids worry about their futures in the world that is not not inclusive to recognize the importance of reasonable accommodations.”
Trump and Kennedy have long focused on the rising rates of autism, saying autism is an “epidemic.” Kennedy, who has long promoted the idea that vaccines cause autism, pledged to the president last month that he would find the cause of such an epidemic by September.
But the Centers for Disease Control and Prevention, which falls under his purview, found that the number of autistic children has increased to 1 in 31 children younger than eight years old because of improved diagnoses and the expanded diagnostic criteria.
Rebekah Sanderlin spent many years struggling to get her son a diagnosis, while many people said he could not be autistic because he could speak and made eye contact. That meant she often had to pay out of pocket for therapies without a diagnosis.
“And then finally, when my son was 12, we were finally able to get the diagnosis,” Sanderlin, who now lives in Virginia Beach told The Independent. All the while, the autism panic continued apace. In fact, Sanderlin interviewed Andrew Wakefield, the disgraced former physician who would lose his medical license after he put out the initial study connecting autism to the measles, mumps and rubella vaccine.
Most researchers agree that there is a genetic component for autism. While Sanderlin said that she has not been diagnosed, their doctor pointed the finger at her and her husband.
“When we when my son finally got the diagnosis, it was with a pediatric neuropsychologist, and she looked at my husband and I in the appointment, and she told us that we were both on the spectrum ourselves, and both had Tourette’s,” she said.
There have already been signs that some parents are hesitant about screening their kids or receiving an autism diagnosis in the midst of Trump and Kennedy’s crusade.
Rebecca Smith, a teacher based in Texas, said that she had only one reaction.
“I think a lot of people don’t always make that connection, but to go and turn it like that and basically put the blame on women for, you know, the reason why there’s their child’s autistic, it’s just laughter, it’s just so irrational and crazy” she sad.
She said that her goal is to normalize disability as an educator and tell other students that autistic classmates are not weird.
“Now, I feel like this kind of adds on to our plate, especially our elementary educators, you know, reassuring and our reassuring mothers that, like, hey, if they are like, it’s not on you,” she said. “And I’m afraid this is just going to further push that narrative with those parents, where they don’t want to, you know, heaven forbid, maybe list it like that or that they were feel like they’re neglectful or anything like that.”
Despite the statements from the Trump administration, almost every autism organization from parent groups to autistic-led groups like the Autistic Self-Advocacy Network to Autism Speaks all criticized the Trump administration’s words.
Cook said she is hopeful this could lead to productive conversation.
“There’s the ‘profound autism’ community, there’s the “level one” self advocates,” she said. “But if we could at least just find it in our, in ourselves, to say, but you know what, we ain’t, we ain’t an epidemic.”
