Plan for Autism Spectrum Disorder 'Registry' Sparks Concerns

Takeaways

• HHS Secretary Robert F. Kennedy Jr. announced a plan to research environmental causes of autism spectrum disorder, which includes creating a data registry of individuals with ASD.
• This plan has raised privacy concerns and criticism from disability advocates, who are worried about the potential for stigmatizing people with ASD.

In April, the United States Secretary for the Department of Health and Human Services (HHS) Robert F. Kennedy Jr. announced a plan to research potential environmental causes of autism spectrum disorder (ASD). Citing research from the Centers for Disease Control and Prevention (CDC) that indicates rising autism diagnoses, with one in 31 children having an autism diagnosis in 2022, the Secretary framed autism as a modern-day epidemic caused by an unknown environmental toxin.

A central feature of the plan is compiling data about people with autism to determine what environmental factors may be related. This has led to privacy concerns from the autism community and disability advocacy organizations, as well as broader ideological disagreements about how ASD affects individuals, families, and society.

What Will the Registry Entail?

A May 7 HHS press release stated that the National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) would work together to create a dataset to understand autism. According to the release, NIH will establish a “platform enabling advanced research across claims data, electronic medical records, and consumer wearables.” The initiative, according to the release, would comply with existing privacy laws.

Initial data will come from Medicare and Medicaid enrollees diagnosed with autism. Per the announcement, the purpose of this data collection is to identify:

• Autism diagnosis trends
• Health outcomes
• Care access and disparities
• The economic burden on families and health care systems

In his April address, Kennedy stated that research funding would be available to explore possible environmental causes of ASD. He cited exposure to mold, food additives, pesticides, medicines, and ultrasound as potential causes.

Kennedy asserts that the pilot program will uncover the cause of autism by September. Though the pilot program will target autism, HHS’ announcement suggests that similar datasets could be useful in studying other topics related to health care and chronic conditions.

Response From Advocacy Organizations

Numerous disability advocacy organizations, including the Autism Society, the Autistic Self Advocacy Network (ASAN), the Disability Rights and Education Fund (DREF), have criticized the HHS Secretary’s autism agenda overall as well as the plans for the registry.

Kennedy’s remarks about ASD being a devastating diagnosis for families were seen as offensive to people across the disability community and sparked concerns that developing such registries could further stigmatize individuals with autism. Advocacy groups have pushed back against the Secretary’s comments about severe autism while questioning how the autism registry would keep individuals’ health information private.

Helen Tager-Fulsberg, director of the Center for Autism Research at Boston University, noted that CMS data could be used to personally identify individuals because it includes date of birth, sex, and location, National Public Radio (NPR) reported. Tager-Flusberg, who also leads the Coalition of Autism Scientists, an organization formed in response to Kennedy’s autism agenda, pointed to potential limitations of the dataset, as it would only include those receiving Medicare and Medicaid.

The cofounder and president of the Autism Science Foundation, Alison Singer, said that the organization was flooded with calls, emails and texts from people in the autism community concerned about the registry. While the foundation supports registries, she said that more clarity would be necessary to abate privacy concerns over patients’ health records.

Ideological Differences

Kennedy’s description of ASD as an “epidemic” that is “destroying families” is also a point of contention. Many autism advocates disagree with Kennedy’s goal of finding a way to prevent autism. In support of the idea that autism is genetic, they characterize people with ASD are neurodiverse, seeing the world in a unique and inherently valuable way.

Following Kennedy’s initial remarks, eight disability and ASD advocacy organizations invited him to a roundtable discussion in May. The event sought to address “challenges and opportunities that shape the lives of autistic individuals across the country,” per the American Association of People with Disabilities (AAPD). Kennedy declined to attend.

In an interview with NPR, Colin Killick, executive director of ASAN, spoke in part to the Secretary’s research approach.  

“If he would listen to autistic people when we tell him what we actually need, he would have a chance to do a lot of good for our community,” Killick said.

“Life of an autistic person is difficult because we live in an ableist society,” he added. “Supports and accommodations and services aren’t readily available. …The thing to do is invest in the kind of research, the kinds of services that actually help autistic people.”