Natalie Eilbert
Milwaukee Journal Sentinel
At 40, Erin Miller takes solace in the ordinary joys of life. She goes on nature walks, watches the seasonal butterflies, enjoys a good bowl of ice cream, and plays cards with friends.
As an autistic person, it pained her to hear members of the Trump administration, including President Donald Trump, paint her life as something that needed to be cured. And it goes far beyond hurt feelings. Miller, of St. Francis, worries the ramped-up rhetoric around finding a cure for autism will have grave consequences for her and the autism community.
“The remarks are very damaging to autistic people and our families. While we have different experiences, we still have to live in the present,” said Miller, who co-chairs the Constituent Advisory Committee of the University Center for Excellence in Developmental Disabilities at the Waisman Center in Madison. “When our leaders who have this massive microphone are saying it’s a horror show to live with autism, it really affects our relationships and our ability to live a rich, fulfilling life.”
“The remarks are very damaging to autistic people and our families. While we have different experiences, we still have to live in the present,” said Miller, who co-chairs the Constituent Advisory Committee of the University Center for Excellence in Developmental Disabilities at the Waisman Center in Madison. “When our leaders who have this massive microphone are saying it’s a horror show to live with autism, it really affects our relationships and our ability to live a rich, fulfilling life.”
The announcement has caused an uproar, with researchers, doctors, autism advocacy organizations and autistic individuals saying it ignores decades of scientific knowledge. Some said the administration was oversimplifying; some said it was just plain wrong. And some said it dehumanized people with autism by attaching a stigma to them, as if they had a disease rather than a condition.
“Rigorous research starts with a question, not with an answer,” said Beth Swedeen, executive director of Wisconsin Board for People Developmental Disabilities. “I did not see anything in that press conference that reflected research that has been rigorously reviewed and is common among the research community.”
Multiple studies show that at some point during pregnancy, most people use acetaminophen. It is considered the only safe over-the-counter option for pain or fever for pregnant people. Other common pain relief options such as ibuprofen and regular-dose aspirin can increase the risk of serious complications during pregnancy.
That’s one of the many concerns of Milwaukee resident Rachel Crites, 54, a licensed midwife and the mother of an autistic individual. As someone who has worked with expecting families for years, the notion that pregnant people shouldn’t use Tylenol is “extraordinarily dangerous.”
“We know Tylenol is a safe way to control fever, including during pregnancy. I’m concerned that raising unproven theories about the link between autism and acetaminophen is going to be confusing for families who are pregnant,” Crites said. “We know that not controlling fever is a huge risk for babies. This language is unhelpful and wrong.”
Crites’ 22-year-old son, Josha Crites-Kumal, works two jobs and even has time to volunteer at a food pantry. He’s proud to be autistic, but more support would improve his quality of life. Many of those improvements would come from National Institutes of Health research that Trump has cut.
For years, scientists have studied a possible link between pregnant mothers’ use of acetaminophen, the active ingredient in Tylenol, and neurological conditions like autism and A.D.H.D. The findings are complex. Some studies suggest a link; others do not. None have found proof of a causal relationship.
Trump and his advisers also discussed a potential treatment for autism, a drug called leucovorin, which Health and Human Services Secretary Robert F. Kennedy Jr. is reportedly considering fast-tracking for FDA approval.
“The announcement is an incorrect reading of data,” said Noor Pervez, Community Engagement Manager at the Autistic Self Advocacy Network. “The way that RFK Jr. speaks about autism is actively dehumanizing, and it promotes stigma against autistic people.”
A call for more support, not cures
Rechelle Chaffee, executive director of Autism United of Wisconsin, started seeing chatter Sunday night on the organization’s various social media pages from concerned families. Fear and guilt permeated the conversations, Chaffee said, with parents asking one another, “Did I do something wrong?” and “Is this my fault?”
Chief among the organization’s mission-critical focuses is family support, especially when autism makes it rounds in the news.
“With autism in the news so often, it can be very emotional,” Chaffee said. “Autism, we know for a fact, is not caused by a single factor. We want to bring the community together, let them see they’re not alone.”
While support groups exist for families, Miller and advocates expressed concern that too often, the vast majority of autism research funding has gone toward a biological quest for a cause, not research on ways to improve the quality of the services and supports autistic people receive.