Sign up for TPR Today, Texas Public Radio's newsletter that brings our top stories to your inbox each morning.
April is Autism Awareness Month, also known as Autism Acceptance Month, and in 2025, people living with the neurodevelopmental spectrum disorder and their advocates found themselves unusually busy. That's because the US Department of Health and Human Services under Robert Kennedy, Jr., focused on autism in April, promising to find a cause for an increase in diagnoses by September. But Kennedy also triggered widespread alarm during a later news conference where he spoke of autism as a "disease" that "destroys families" and is an "individual tragedy" that renders those with the disorder unable to pay taxes or use the bathroom without help.
Autism is a spectrum disorder with a wide variation in the level of support that a person might need throughout their lifespan, but Kennedy's take was "shocking," according to Autism Society of Texas Executive Director Jacquie Benestante, because it suggests that a person's value can and perhaps should be measured by what they can contribute. "We do not condone valuing someone by their productivity level," Benastante said.
Many people with autism and advocates were also shaken by NIH Director Dr. Jay Bhattacharya's announcement that HHS would build a registry of Americans diagnosed with autism that would include data from publically available sources, but would also seek to include data from private sources pharmacy records, genomic information, lab tests, and even smart watch data. HHS has since walked back on that statement, saying it plans to build a database, but will not seek out private information.
Jacquie Benestante spoke with Petrie Dish host Bonnie Petrie about all of this and more.
