Wisconsinites Dealing With Autism Find Trump-Kennedy Views Harmful

Megan Hufton, seen here with her sons AJ, left, and Asher, center, is education and training specialist with the Autism Society of South Central Wisconsin. (Photo courtesy of Megan Hufton)

Megan Hufton’s two sons, AJ and Asher, both have been diagnosed with autism. Neither speaks.

But she doesn’t see autism as the “horrible, horrible crisis,” President Donald Trump described at a Washington, D.C., press conference Monday.

Nor does she agree with Health and Human Services Secretary Robert F. Kennedy Jr., who said at an April press conference that “autism destroys families” and is an “individual tragedy as well.”

Hufton said Monday that the message she hears in such statements is that “it’s going to be a horrible, horrible tragedy” if a family member is autistic. “It’s not the way I describe our family or our lives at all.”

People with autism, their family members and advocates said the messages coming from the Trump administration are harmful and wrong.

”People with autism are being identified as [a] population of people whose existence the government seeks to prevent or change into people who are more ‘normal,’” said Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities (BPDD), in a statement Monday. “Autistic Americans have the same unalienable rights as all Americans, the right to life, liberty, and pursuit of happiness. We all find different ways to achieve these things, and it is the individual, not the government, who decides our own worth.”

“People with autism have always existed,” said BPDD Chair Sydney Badeau. “We are part of what humanity looks like, and we are amazing.”

In interviews, four Wisconsin residents with autistic family members and an adult autistic self-advocate expressed similar views.

After years in which attitudes towards autism and understanding of people with autism have been improving, “this is taking everything back,” said Heather Murray, a Waunakee child care provider whose 20-year-old son has grown up with autism.

“It’s frustrating to hear it still being called a disease,” Murray said. Autism encompasses a broad spectrum of behaviors that might come with mild or severe disabilities for some people, she said, but it’s not a disease that can be cured.

“It is a way of being,” Murray said. “It is who they are. You can’t take the autism away from them.”

Jenny Price of Madison has a 16-year-old son who is autistic. An active volunteer in advocating for Wisconsin parents whose children have disabilities, Price said she’s been paying attention to how Kennedy has talked about autism since he took office at HHS.

Kennedy has said “that autism is something to be feared, it is epidemic, it steals our children, it ruins families — which are all things we know are not true and I just find it pretty unhelpful,” Price said.

At the Monday press conference Trump and Kennedy focused on claims that linked the use of Tylenol (acetaminophen) during pregnancy to autism. Medical experts said the evidence does not support those claims.

“Current research shows an association, but it is limited and inconclusive,” said Rechelle Chaffee, executive director of Autism United of Wisconsin, based in the Milwaukee suburb of Wauwatosa. “Autism we know is not caused by a single factor. It’s caused by multiple variables.”

In addition to being the parent of two autistic teens, Hufton is the education and training specialist for the Autism Society of South Central Wisconsin.

“Some of the strongest scientific evidence that we’ve seen shows that there is no causal link” between acetaminophen and autism, Hufton said. “We support scientific based research, but also we want to make sure that research is grounded in science, it’s grounded in compassion and respect for these individuals, and really just making sure that we’re promoting inclusion.”

Trump also made references to debunked claims linking vaccines to autism.

“We’ve studied vaccines,” Hufton said. “They’ve been studied for decades and the research doesn’t support this claim. So it definitely makes us concerned about this messaging that is once again just kind of implying that there’s this single cause of autism and the fear behind it.”

Chaffee said that while $418 million was spent in 2020 on autism research, just 8% of that went to research on improving the quality of support and services for people with autism and their families.

“That’s not a significant amount of money going to improve the lives of people,” she said. “That is a missed opportunity to say the least.”

Price doesn’t expect that to improve in the current administration.

“Are they doing research into what supports or what types of programs make the lives of people with autism better? It’s pretty clear they’re not,” Price said. “Are they going to look for ways to support kids with autism or other learning disabilities in school? No, they’re going to remove anything with the word inclusion from the Department of Education grants.”

Erin Miller, 40, is a resident of Milwaukee’s south suburbs and has lived with autism her whole life.

“I’m really growing weary of all of the speculation around what causes it.” Miller said.

She wants to see more research on how to help people who have autism and are trying to live full lives now. Those include research on subjects that range from accommodations for autistic women in nursing homes, to research on sleep to improving education services and employment practices that recognize the needs of autistic people.

“I would like to see more practical services that improve our life today,” Miller said.

People with autism and their families find Trump-Kennedy autism message harmful and wrong was originally published by the Wisconsin Examiner.