RFK and Autism

Posted on June 20, 2025

As we all have read or watched the news conference that Robert Kennedy Jr, the new Human services Director, announced a partnership between the Centers for Medicare and Medicaid (CMS) and the National Institutes of health (NIH) to build a real-world data platform to study autism. This data-sharing plan would enable research by using data, electronic medical records, and consumer wearables (fitness trackers and other devices). The move comes amid contradictory statements from the agencies over the past weeks on the issue of an “autism registry.” Kennedy made statements about the new statistics on autism which now are 1/31 people. The statistics are being studied on 8-year-old children, the latest in a series of increases in recent decades Kennedy stated, “that autism destroys families” and is an “Individual tragedy as well” these two statements are totally false. How do I know this? Well, I am a well-known autistic self-advocate in Pennsylvania and a board member of the Greater Harrisburg Autism Society Affiliate. Our home office has given a statement on the remarks on Kennedy’s stats that reiterate they are misleading and false states about autism. I can tell you that autism is not a disease like measles, the flu, or thousands of diseases that humans can contract. Autism is a brain disorder that causes the brain to change form. The official term is autism spectrum disorder because autism comes in many forms. It is a spectrum, and everyone falls on it somewhere different, no two autistic people are the same. For example, some have mild autism, previously known as Asperger syndrome which comes from Nazi researcher Hans Asperger to the most severe non-vocal autism and anything in between.

Why are there new numbers of children with autism? The main reason is because there are new and better clinical tools to diagnose a person with an ASD plus doctors are being trained to look out for signs of autism in individuals earlier. When a child is diagnosed at a very young age there are tools that can be used to help that child improve social and developmental skills. In more recent decades, the diagnostic criteria for autism have broadened, producing among the life course spectrum that ranges from severe impacts to more moderate ones. Over the years, autism’s definition and diagnosis criteria have changed. From the 1950’s and 1960’s,”it is very likely that many people with profound autism were misdiagnosed with ‘mental retardation,’ a term in use at the time for schizophrenia, while other autistic people probably got no diagnosis at all,” said John J. Claremont McKenna, a college politics professor, author of the book, “The Politics of Autism Navigating the Contested spectrum,” and a father of an autistic son who’s about to graduate college.

I am using facts on autism from a news story from an article PolitiFact. In this article, autism’s expanded definition means only a minority of people on the spectrum have the kinds of severe limitations Kennedy cited, though it’s hard to say exactly how many. In a 2024 study by researchers at the University of Utah and children’s Hospital of Philadelphia, they looked at 1,368 U.S. children with autism. They found that 38% were classified as having a ‘severe” intellectual disability. 67% of those in the “severe” category had trouble bathing or dressing by themselves, which, if generalized to the entire autistic population, would be less than 7%. Another study found that incontinence was only reported by 12.5% of the autistic people studied and fecal incontinence by 7.9%. In the article medical experts, along with people on the spectrum, told PolitiFact that Kennedy’s portrayal was skewed. A 2023 study written by CDC officials and university researchers found that one-quarter of people on the spectrum have severe limitations, but this is on the high end of the studies, and many people in that one-quarter of the autism population do not have the limitations Kennedy mentioned.

I am part of two different autism studies, one is called P.H.A.S.E.S., which is currently being done by the A.J. Drexel Autism Institute, which looks at autism and the mental health of those on the life course from birth through older Americas. The other is ASC study which is conducted by the University of North Carolina, Chapel Hill. This study looks just at older autistics. I am a community member along with several other members helping with these studies which I believe will both go hand in hand.

The good news is that these studies are being conducted through listings of people with autism through Medicaid and Medicare to prove how Kennedy’s statements are false and why programs like these are necessary. Unfortunately, Kennedy has enlisted another person to look into environmental causes of autism but that person along with Kennedy are not qualified to be in the positions they hold. Kennedy will set autism back by 50 years. We must keep calling our senators and congress people so that accurate research can be continue and that autistic communities in the U.S. can continue being supported through programs.