Health and Human Services Secretary Robert F. Kennedy Jr. has launched a controversial new initiative aimed at studying autism through the widespread collection of personal health data. As part of this effort, the National Institutes of Health (NIH) is aggregating sensitive medical records from both federal and commercial entities to create a comprehensive autism research registry. This database would include extensive personal information, ranging from pharmacy prescription records and insurance billing data to genetic information and details pulled from wearable devices. The NIH is reportedly negotiating with Medicare and Medicaid officials to gain access to even more expansive data pools, raising serious concerns about medical privacy and consent.
Kennedy has long been criticized for spreading discredited theories about autism and vaccines. Despite overwhelming scientific consensus debunking any link between vaccines and autism, Kennedy continues to frame autism as an environmental and preventable condition. During a recent press briefing, he referred to autism as an “epidemic” and a “preventable disease,” statements that have drawn sharp criticism from medical professionals and disability advocates. He also pledged to uncover the supposed root cause of autism by September—an assertion that many experts find not only unrealistic but dangerously misinformed.
Disability rights organizations and autism researchers have condemned the direction and rhetoric of Kennedy’s campaign, calling it deeply rooted in ableism. Experts stress that increases in autism diagnoses are due to better awareness and improved diagnostic practices, not a spike in the actual incidence of autism. Alycia Halladay of the Autism Science Foundation emphasized that the data Kennedy references more accurately reflects growing recognition and reduced stigma, not an unfolding crisis. The Centers for Disease Control and Prevention (CDC) has similarly affirmed that more robust diagnostic outreach, rather than a public health emergency, is responsible for the uptick in reported cases.
Many professionals in the field argue that Kennedy’s characterization of autism as inherently tragic or debilitating is both inaccurate and harmful. Autism is a spectrum that includes a wide array of abilities and challenges, and many autistic individuals live fulfilling lives, contribute to the workforce, form meaningful relationships, and engage in creative and recreational pursuits. However, Kennedy has painted a bleak picture, suggesting that autistic individuals are incapable of participating in society—a viewpoint experts say is not only false but deeply dehumanizing. Statements like these perpetuate stigma and reinforce damaging stereotypes, further marginalizing a community already fighting for recognition and respect.
Rather than pouring resources into invasive data collection and flawed theories, advocates urge the government to prioritize policies that genuinely benefit autistic individuals. These include investments in home and community-based services, accessible education, and personalized care. Critics argue that Kennedy’s platform, under the guise of scientific inquiry, is being used to push discredited views and undermine the rights of disabled people. Senator Maggie Hassan stated that Kennedy could make a meaningful difference by listening to experts, caregivers, and autistic individuals themselves—yet instead, he appears intent on pursuing a harmful and divisive agenda.