Wisconsin autism groups say RFK Jr. wrong on facts, offensive in approach

Yahoo

21-04-2025

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As Hugh Davis watched Robert F. Kennedy Jr. deliver his first press conference since becoming the federal health secretary, one statement in particular stunned him: "Autism destroys families."
"Instead of destroying our family, my son has enriched my life," said Davis. "I would like life to be easier for him, of course, but I wouldn't change a thing about him."
Davis, who serves as the executive director of Wisconsin Family Ties, a nonprofit focused on improving children's mental health outcomes, also was frustrated that the remark was embedded in a string of factual inaccuracies made by the U.S. health secretary during the April 16 press conference.
For the topic of his press conference debut, Kennedy chose a new report on autism prevalence from the Centers for Disease Control and Prevention published April 15. The report showed that rates of autism had increased to one in 31 among 8-year-olds across Autism and Developmental Disabilities Monitoring sites, including Wisconsin.
Rather than share takeaways from the report, Kennedy strayed from the findings and at times appeared to criticize them.
For example, the report concluded that while prevalence has increased from 2020 to 2022, that can reflect differing practices in autism spectrum diagnosis evaluation and identification, as well as the availability and accessibility of services.
Kennedy repeatedly bucked the report's conclusion, calling it a "canard," or unfounded rumor, on multiple occasions. And he blamed mainstream media for capitulating to what he called "the myth of epidemic denial."
"One of the things we need to move away from today is this ideology that … the autism prevalence increases, the relentless increases, are simply artifacts of better diagnoses, better recognition of changing diagnostic criteria," Kennedy said.
Instead, Kennedy insisted the uptick was due largely to environmental toxins and not a matter of genetic factors, despite evidence to the contrary on both counts.
"Genes do not cause epidemics. It can provide a vulnerability," he said. "You need an environmental toxin."
He also claimed that autism is preventable, a statement that contradicts scientific consensus. Overwhelmingly, autism is due to genetics, a May 2016 paper published in the Journal of Child Psychology and Psychiatry concluded. That conclusion has been widely replicated by researchers.
Kennedy's message drew a scathing response, not only from advocacy groups focused on autism awareness, education and better accommodations, but from researchers and scientists who have probed the complex causes of autism for decades.
One of the more audacious promises within Kennedy's speech was a September goal to identify environmental toxins he purported were the cause of the rising rates of autism.
"Our viewpoint, as an Affiliate of the Autism Society of America, is that statements like the ones shared by RFK are misleading and short deadlines to 'find a cause' are unrealistic and undermine the important work that researchers and scientists have been conducting for decades," Katie Hess, who serves as the executive director of the Autism Society of Greater Wisconsin, told the Journal Sentinel.
Hess was far from alone in taking an opposing stance.
Following the press conference, leading U.S. autism organizations released a joint statement condemning Kennedy's remarks. Relying on speculation and disinformation, the statement read, Kennedy's rhetoric only "perpetuates stigma."
"Language framing Autism as a 'chronic disease,' a 'childhood disease' or 'epidemic' distorts public understanding and undermines respect for Autistic people," the joint statement read. "Research must be guided by credentialed experts and inclusive of the complexity and diversity of the lived experiences of the Autism community — not redirected by misinformation or ideology."
When Hess read the CDC report on the uptick in prevalence, it indicated only that more people have been identified with autism than in previous reports. It doesn't mean there are necessarily more cases of autism, Hess said.
"As more education has been shared and more research has been done for the past few decades, individuals are able to be identified earlier," Hess said. "We are also seeing more screenings of individuals in under-represented areas, which also is a factor in the increased numbers."
Davis, from Wisconsin Family Ties, agreed. He said vast changes to diagnostic criteria published over the decades in Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM, expanded the criteria of who falls into the autism category.
Until 1980, the DSM, which lays out psychiatric diagnoses in the U.S., contained false leads in early autism research, according to a 2021 paper in the Journal of Autism and Developmental Disorders. Among those early falsehoods, the DSM categorized autism as an early manifestation of schizophrenia.
It wasn't until the DSM-5, released in 2013, that multiple categories of autism, including Asperger's, ADHD, and Rett's disorder, fell under one umbrella term that maintained and promoted the idea of a spectrum. Notably, for the report published April 15, CDC researchers conducted surveillance for autism spectrum disorder among children born in 2014.
"It's more realistic to say the DSM-5 expanded who falls into the autism category," Davis said. "It's not surprising to me at all that there's an increase in prevalence, and I think that those answers, which the researchers also articulated, are the reason for this increase."
Another moment Davis took exception to in Kennedy's speech — and one that perhaps garnered the most national reaction — was when he named all the experiences autistic people "will never be able to do," including filing taxes, playing baseball, holding a job, going on a date, writing a poem, and even using the bathroom on their own.
Even when a reporter from Fox News noted that autism exists on a spectrum, containing both people who have sensory issues all the way through care-dependent individuals, Kennedy described autism as "a spectrum of injuries."
Davis' 28-year-old autistic son has a job, files taxes, goes on dates, and indeed, he loves writing the occasional poems and is a great writer in his own right, his father said. There's a popular dating show, in fact, dedicated to people on the spectrum, he said.
Of course, not everyone diagnosed with autism can live independently, but people with autism have always lived in a variety of settings, at every age, Davis said. That's part of what it means to be diagnosed on a broad spectrum.
"There are people who are pretty profoundly impacted by these challenges," Davis said. "And we owe it to everyone to continue to research this ― not to hinder that research by saying, 'Well, we know it's the environment.' We don't know that. That's a patently false and ridiculous statement."
After Emma Wiltgen, an autistic teenager from De Pere died by suicide in 2023, her mother Amy told USA TODAY Network-Wisconsin that her daughter struggled to find a place in the world. She felt like a burden to others, and feared growing up in a world that shunned people like her.
Emma's experience, and that of thousands of others like her, is one reason why the reaction to Kennedy's speech was so vehement.
In addition to peddling information with no scientific support, he framed everything as if people with autism contribute nothing, and that they are all injured burdens. For people concerned about the self-esteem and suicide ideation of those with autism, Kennedy sounded like his goal was to rid the world of autistic people, at one point even suggesting autism cases should be monitored the same as the country does with measles outbreaks.
Although research into the suicide deaths, attempts and ideation of autistic people is relatively new, early data shows stark differences in autistic people and non-autistic people who die from, and attempt, suicide. A 2021 study from JAMA Network Open found that people with autism were three times likelier to attempt or die by suicide than those without autism across all age groups 10 and older.
Another study from 2024 found that, in people who received an autism diagnosis as an adult, more than 60% contemplated suicide. That's especially concerning given that just 4.8% of non-autistic adults have thoughts of suicide. Available data suggested autistic adults were 25 times more likely to attempt suicide than non-autistic adults.
On the surface, the risk factors behind this surge aren't so different from the reasons other groups die by suicide ― having a feeling of hopelessness, feeling "stuck," living with depression. Unique to autistic people, however, is the social pressure to be neurotypical, or "normal," and the lack of support for them to be themselves.
Masking is a way for some autistic people to function in a society that doesn't accept or understand them. It means behaving in ways that aren't necessarily authentic to who they are — and it can be exhausting and depressing.
Hess, from the Autism Society of Greater Wisconsin, said she hoped people with autism wouldn't feel the need to mask their behavior, that they would be comfortable being who they are. "Our responsibility as an inclusive culture is to welcome those of all abilities so they can be comfortable in a society where they belong and feel they can be the best version of themselves," she said.
One of the more detrimental things Davis has seen that impacts societal attitudes is how autistic students are treated in schools. Restraint, seclusion and other disciplinary responses to behaviors don't help autistic children, yet a recent report from the Wisconsin Department of Public Instruction found that, despite students with disabilities comprising 15.3% of the statewide student population, they comprised more than 80% of all seclusion cases and more than 76% of all restraint cases in the 2023-24 school year.
"The theory of our work is if you change adult attitudes, approaches and actions, you improve outcomes for kids," Davis said. "I think of a line I love from the show 'Ted Lasso.' 'We need to be more curious and less judgmental.' That's what we really need to do."
Perhaps tellingly, in a leaked memo obtained last week by multiple media outlets, the Trump administration's 2026 budget outline includes cutting or eliminating federal autism programs.
Wisconsin Family Ties runs a parent peer program, which links trained parent peer specialists with parents who need help and hope. Parents can request services through Wisconsin Family Ties' online form or by contacting the connection coordinator at [e-mail].
Autism Society of Greater Wisconsin is an affiliate of Autism Society of America. Among its many programs, it runs an informational and referral phone line for autistic individuals and families of autistic individuals. Call 888-428-8476 or 920-558-4602.
Autism Society of South Central Wisconsin serves Crawford, Columbia, Dane, Grant, Green, Iowa, Lafayette, Richland, Rock, and Sauk counties. For information and assistance, email [e-mail] or call 608-630-9147.
Autism Speaks has a selection of resources, tool kits and directories sorted by age and audience. They also provide videos ranging from descriptions of autism to examples of various common interventions.
Organized by the Waisman Center, Community of Practice on Autism Spectrum Disorders and other Developmental Disabilities is a Wisconsin group comprising parents, researchers, physicians, and advocates that provides recorded presentations on a variety of subjects including anxiety, mental wellness, supporting challenging behavior, and more on its YouTube page.
Natalie Eilbert covers mental health issues for the Milwaukee Journal Sentinel. She welcomes story tips and feedback. You can reach her at [e-mail] or view her X (Twitter) profile at @natalie_eilbert.
This article originally appeared on Milwaukee Journal Sentinel: Wisconsin groups call RFK Jr.'s autism speech offensive and harmful