Lyla Novakowksi was dismayed by President Donald Trump’s recent remarks about autism.
“I watched a good bit of it, and then I had to take a break,” Novakowski said of the president’s press conference last month.
Novakowski is autistic, as are her children. She owns We Rock the Spectrum, a Fenton-based business that offers neurotypical and neurodivergent kids a chance to ride on a zip line, make arts and crafts and jump on a trampoline.
The St. Louis County resident said that Trump calling autism a “horrible, horrible crisis” and suggesting that expectant mothers shouldn’t take Tylenol isn’t going to help the public and government better integrate autistic people into society. The condition often affects communication, social skills, motor skills and light and sound sensitivity.
“The sad part is that autism, because it is so misunderstood and there's so many different voices in this, it becomes this sort of boogeyman in the closet,” Novakowski said.
Trump administration officials said they’re trying to be transparent to families who want to know more about the root causes of autism.
But many autistic St. Louis residents and parents of autistic children said they’re incensed, frustrated and scared by how Trump and Health and Human Services Secretary Robert F. Kennedy Jr. talk about autism.
They believe that promoting a widely disputed link between Tylenol and autism is bringing up old and discredited tropes and that Trump and his administration are wrongly characterizing autistic people as tragic and broken and whose existence amounts to a crisis.
“My daughter's an amazing person that contributes to society and contributes to our family, and she's not a crisis,” said Jenny Shank of St. Louis. “I think any leader has the opportunity to create change. And I think what's needed for people with autism and other intellectual and developmental disabilities is awareness, acceptance and opportunities in our communities, and funding for schools for help to meet their maximum potential.”
While medical experts and even some Republicans pushed back against Trump’s characterizations, autism advocates fear that those who look to the president for guidance will erase several decades of work to better understand the disorder.
“We have to get out of that blame game because it paralyzes people from moving forward,” said Jeanne Marshall, president of EasterSeals Midwest. “You get caught up in the angst and the worry about what caused it and really what we need to be focusing on is the intervention. What can I do next? How can I provide the resources for this family and the family support and the intervention that's going to change the trajectory of that child's life and that family's outcomes?”
‘My children did not ruin my family’
James Turner III of St. Louis wasn’t completely shocked by what Trump and Kennedy said last month. Turner, who works as a Democratic legislative aide at the Missouri Capitol, was diagnosed with autism when he was young.
“It was a big missed opportunity to where the government could take concrete steps into destigmatizing autism and talking about it in a nuanced fashion,” Turner said.
Trump declared that “the meteoric rise in autism is among the most alarming public health developments in history.” He didn’t mention that more people have been diagnosed with autism because of more widespread screening and changes in the diagnostic criteria.
Trump said pregnant women shouldn’t use Tylenol. He also backed widely discredited theories about how vaccines cause autism, telling an anecdote about how one of his employees “lost her boy” to the disorder after he received vaccinations.
“Instead of attacking those who ask questions, everyone should be grateful for those who are trying to get the answers to this complex situation,” Trump said.
Stacey Hill, of Affton, said she felt Trump and Kennedy were attacking autistic people and parents of autistic children. She’s a retired teacher and the mother of three autistic children. Two have higher needs and have trouble communicating. They also can’t be left alone.
“My children did not ruin my family,” Hill said. “And you know, we're better parents because of my children. Everybody who has worked in my house is a better person because of my children.”
Hill added that Trump’s push to link Tylenol with autism is part of an old trope in which people blame mothers who give birth to autistic children. That’s what happened decades ago, when some doctors pushed the now-discredited theory that autism appeared in kids whose mothers were uncaring toward them.
“I know that I am not to blame for the autism,” Hill said.
Asking the wrong question?
River Rockwell, of Overland, said Trump and Kennedy are asking the wrong question.
Rockwell said autistic people like themselves don’t need to be "cured" or be fixated on the cause of autism. Rather, governmental and civic leaders should reorient a society that wasn’t built for people with autism.
“They always either want to blame the parent or blame circumstances that caused it or try to cure it, not realizing that we … don't need a cure,” Rockwell said. “We're a part of nature and that we exist for a reason.”
Added Rockwell’s spouse, Story Frederick: “I also just look at us as a different processing system. It's like everyone else is Windows, and we’re a Mac.”
One of the people who has been following how both Trump and Kennedy approach autism for years is Eric Michael Garcia. He’s the Washington Bureau chief for the Independent, a United Kingdom-based online newspaper, and the author of "We’re Not Broken: Changing the Autism Conversation." That 2021 book detailed Garcia’s journey after being diagnosed with autism and how governments and institutions can make life better for autistic people.
Garcia said he was surprised by the press conference.
“It was all this kind of tragic, apocalyptic language,” Garcia said. “It was shocking to hear that from the president of the United States.”
St. Louis Public Radio asked both the White House press office and the Department of Health and Human Services to respond to criticism about how Trump and Kennedy describe autism — as well as why they didn’t focus at the press conference on integrating autistic people into society.
Health and Human Services spokeswoman Emily Hilliard provided a statement that defended the linkage of Tylenol with autism by citing several studies. Most medical experts have disputed this finding.
“President Trump and Secretary Kennedy pledged to practice radical transparency,” Hilliard said. “HHS is honoring that commitment by following the science and sharing critical public health information as soon as it becomes available, ensuring families are informed and public health is protected.”
White House spokesman Kush Desai said getting "to the bottom of our autism epidemic is not a mockery of Americans with autism."
“The two wonderful mothers of children with autism who spoke in the Roosevelt Room with President Trump, Secretary Kennedy, and other health officials represent the millions of American parents whose questions and concerns about America’s skyrocketing rates of autism have been ignored and mocked – questions and concerns that this administration is finally addressing," Desai said.
While the press conference did feature two mothers of autistic children, it did not include any autistic speakers. And Garcia noted that Trump’s administration has hollowed out programs like the Administration for Community Living, which helps disabled and elderly people stay in their communities instead of institutionalized care.
“And the ultimate irony is that when I talked with officials who were leaving the Administration for Community Living, they said that during the first Trump administration they leaned heavily on [that organization] for COVID-19 protocols,” Garcia said. “So this is something that the Trump administration knows is an effective body, but they just completely zeroed out or hollowed out.”
A focus on acceptance
Luke Barber of St. Louis County, who has run twice for state representative, is autistic and made disability rights a major part of his campaigns.
Barber said businesses could try to accommodate autistic people by dimming their lights or not playing loud music. That, he said, could make it easier to complete essential tasks — like shopping for groceries.
Becca and Matt Vitale of Sunset Hills are the parents of a 4-year-old who is nonverbal but is able to communicate with the assistance of a special device.
Becca Vitale said governmental and civic leaders could normalize how some people need what’s known as AAC devices to communicate.
“It's not like every day's roses, but it's just the reality of the world and living in a neurodiverse world full of different kinds of people,” she said. “So instead of focusing on what the issues are, we should instead focus on how we can be more accepting and accommodating to people that operate and communicate in a different way other than ours.”
Matt Vitale said he wants autism to be in the spotlight but not how it has been.
“Now people are making memes about being a Tylenol American and all these different kinds of things. And I don't think people are intending to be hurtful. I think they're kind of intending to push back on Trump and on the narrative. But I don't think there's a realization that there's actually families that this is impacting. And I think that's what's the most disappointing thing.”
Garcia worries that people who are not as attuned to the nuances of autism will take what Trump or Kennedy say at face value.
“You should be able to listen to what the government says and expect that it will disseminate accurate information,” Garcia said. “And I worry that it's going to lead to a lot of people fearing autism, instead of focusing on: ‘OK, what are the best ways we could support autistic people?’”
