We Can’t Let RFK Jr. Divide Our Autistic Community Based on Our Support Needs

When Robert F. Kennedy Jr., longtime promoter of the debunked claim that vaccines cause autism, was confirmed as secretary of the Department of Health and Human Services, autistic advocates warned he could use his position to further endanger our community. Soon after his confirmation, Kennedy announced his plans to launch a large-scale initiative to fast-track efforts to identify the cause of autism, the details of which have since deeply troubled the autistic community.

An especially concerning aspect of the initiative was revealed when National Institutes for Health (NIH) Director Jay Bhattacharya stated during a presentation that the National Institutes for Health would be “developing national disease registries, including a new one for autism.” After autistic people and advocates raised concerns, however, the Department of Health and Human Services quickly issued a statement to clarify that it is not creating an autism registry.

The clarification, first reported by STAT, walks back the use of the term “registry” to refer to the new autism research initiative. This word had especially caused alarm among civil rights and disability advocates. Historically, government registries were used to subject disabled people to human rights violations at the hands of the state, including forcible sterilization and institutionalization.

These dynamics persist today, via conservatorships, criminalization, and other legal processes that diminish the autonomy and self-determination of disabled children and adults, especially autistic people who are nonspeaking, cannot mask their autistic traits and behaviors, are institutionalized and/or have an intellectual disability. Forced sterilization of disabled individuals without consent is still legal in some states.

In a similar statement to CBS News, the Department of Health and Human Services described the project as a “real-world data platform” that will “link existing datasets to support research into causes of autism and insights into improved treatment strategies.”

Privacy Concerns Over Trump Administration’s Autism Research Initiative

After the Department of Health and Human Services’ assertion that it is not in fact creating an autism registry, many disability justice organizers asserted the walk-back was a matter of semantics only and said their privacy concerns persisted over the National Institutes for Health data aggregation plans. Other social media users questioned if such a project would be possible due to HIPAA and informed consent requirements for human subjects research.

There are many registries already at the National Institutes for Health for various health conditions, but these registries are generally de-identified — they are not permitted to contain information that could be used directly (either alone or in combination) to identify individuals. Multiple autism registries specifically also exist, although not at the federal level. These lists are managed by several U.S. states and private foundations. Some contain personally identifying information to assist with identifying those who could be eligible for services.

Community concerns surrounding the new autism research initiative were focused on the aggregation of health information across many sources, such as pharmacies, medical records, genetic testing and data from consumer products like smartwatches. There are large de-identified datasets at the National Institutes for Health and elsewhere that include the “real-world” health data of millions of Americans generated by various sources linked together, including data from health records, insurance claims and consumer product use.

Health product companies with offerings ranging from wearable devices to period-tracking apps regularly monetize user data by receiving compensation for granting researchers access to “anonymized” user information, such as for training AI models. This data sharing often occurs by way of third-party data aggregators that merge information across multiple sources, including claims data from health insurance companies.

Autistic people with more autonomy must organize in solidarity with those who are nonspeaking, have an intellectual disability, are more disabled, or are otherwise more marginalized.

The ubiquity of Big Data and Big Tech in medical care and the wellness industry has led to the creation of many multisource health datasets. Centralized datasets and shared data have vast benefits for research and medical care, but health data fragmentation avoids the privacy risks inherent when linking datasets containing private health information.

Even with high de-identification standards, privacy advocates are still wary. Some fear re-identification of sensitive data; others take issue with a consistent lack of transparency, especially related to data storage and security measures.

“Real world” data is regularly used via an “opt-out” model rather than the explicitly “opt-in” nature of human subjects research requiring the informed consent of study participants. This includes research conducted at academic medical centers or government agencies, such as survey research and clinical trials. Such researchers are required to enact extensive measures to protect data privacy and security, with special consideration paid to highly sensitive information.

This new autism research “real-world data platform” is more representative of the norm than a stark deviation, but that doesn’t mean there’s no cause for concern. Rather, the present discussion highlights the tension between the status quo surrounding data aggregation and the very reasonable concerns people have about how their health data is used and stored, de-identified or not.

News that diagnosis data from health records would be incorporated into the new autism “real world data platform” led many late-identified autistic adults to express regret at having pursued a formal diagnosis — or relief that they hadn’t.

But some autistic advocates, including Devon Price, a social psychologist who writes about autistic liberation, point out the inherent privilege in ever having a choice as to whether to be identified as autistic on official documents, including lists maintained by government agencies. Price has long urged caution regarding diagnosis: While it sometimes opens up access to supports, a formal autism diagnosis can pose serious risks related to discrimination and civil rights, in particular related to family policing and immigration.

Fears of Increased Infringement on Autonomy of Autistic People With High Support Needs

There are many additional reasons to be alarmed by the new autism research initiative taking shape under Kennedy, who has already tapped David Geier, a discredited vaccine researcher, to be a key player in his new autism research initiative.

The comments made by Kennedy at a press conference on April 16 drew harsh criticism from autistic people, advocates and caregivers. The press conference was held a day after the Department of Health and Human Services published a press release regarding a finding published by the Autism and Developmental Disabilities Monitoring Network survey conducted by the Centers for Disease Control and Prevention: The prevalence of autism in the United States has increased from 1 in 36 children to 1 in 31.

The framing of this reported increase in autism prevalence as an “epidemic” was widely criticized. Leading autism organizations released a joint statement in response to the press release and related press conference. They called the language used to describe autism damaging and inaccurate, noting that claims that autism is “preventable” are not supported by scientific consensus and arguing that such claims perpetuate stigma. Citing examples from the press release and Kennedy’s comments, they write: “Language framing Autism as a ‘chronic disease,’ a ‘childhood disease’ or ‘epidemic’ distorts public understanding and undermines respect for Autistic people.”

Kennedy’s characterizations of autistic people and their lives during the press conference particularly outraged autistic people and their caregivers: “They’ll never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date,” he said. “Many of them will never use a toilet unassisted.”

Many autistic self-advocates condemned these falsehoods by pointing to the reality that they themselves do pay taxes, write poetry, have been married for years, and much more. The ability of some autistic people to successfully live independently or maintain employment is indeed evidence that this characterization of autism is inaccurate. But this argument fails to respond to the deeper problem: Kennedy simultaneously presumes the very existence of people who do live with these significant limitations should be “prevented” and assigns value only to productivity and independence. These perspectives are core tenets of eugenics.

Autistic writer Collette Grimes also noticed our community trending toward “propping up our most successful, six-figure earning spokespeople,” and had similar concerns, writing, “I can’t help but feel that measuring autistic people by our productivity does more harm than good.” Grimes goes on to argue that these community reactions only serve to uphold the very same capitalist hierarchies of worth at the heart of the ableist beliefs underpinning not only these specific comments by Kennedy but also the material systemic oppression of all disabled people.

These appeals to respectability also reify the very same divisions within our community that are being pushed by Kennedy and his allies. During his presentation, Bhattacharya emphasized “a range of manifestations” of autism, “from highly functioning children to children who are quite severely disabled.” He added, “of course the research will account very carefully for that.”

This comment reflects renewed public discussion about returning to the previous diagnostic schema when Asperger’s was given as a separate diagnosis to those autistic people without an intellectual disability or language delay. However, neither scientific nor community knowledge supports the further separation of the autism diagnosis beyond the levels already used to describe the amount of support an autistic person requires. Separating the autistic community — whether by labeling some as having “profound autism” or giving “level 1” autistic people a different diagnosis altogether — could allow the Department of Health and Human Services to undermine efforts of these individuals to obtain accommodations and simultaneously enable it to justify further infringement on the autonomy of autistic people with higher levels of support needs.

Let’s Organize in Solidarity With the Most Marginalized Members of the Autistic Community

As we resist these attacks on our community, autistic people with more autonomy must organize in solidarity with those who are nonspeaking, have an intellectual disability, are more disabled, or are otherwise more marginalized, and work to end abusive practices including seclusion and restraint, dangerous pseudoscientific “cures” and electric shock therapy to which institutionalized and other autistic people with high support needs are especially vulnerable.

Solidarity with our transgender autistic community members is also crucial. The struggles for gender justice and disability justice both center on rights to bodily autonomy and self-determination and are directly linked via the weaponization of psychiatric and neurodevelopmental diagnoses to deny access to gender-affirming care. On April 28, the U.K.’s National Health Service announced plans to screen trans youth for neurodevelopmental conditions including autism and ADHD; while trans people are more likely to be autistic, the change is being made in response to the Cass Review, a report commissioned by the U.K.’s National Health Service that is unsupportive of access to gender-affirming care for youth, which suggests it’s a move toward limiting access to care.

In the U.S., the fact that autistic youth are more likely to be trans is cited in at least two state laws that ban gender-affirming care for minors. It’s notable that in the 400-page report on released on May 1 by the Department of Health and Human Services on gender dysphoria in youth, autism is mentioned six times, including a cited quote that recommends “extended diagnostic periods” when autism is suspected or diagnosed — a euphemism for delaying and/or denying life-saving medical care. The notion that autism prevents one from knowing oneself — along with other similarly dehumanizing beliefs based in anti-autistic stigma — underpins the use of autism diagnoses to discredit the gender identities of transgender people of all ages, especially youth.

The dehumanization of autistic people epitomized by Kennedy’s stigmatizing comments also contributes to violence against autistic people, including police violence, which disproportionately affects autistic and disabled people, especially autistic people of color. Earlier this month in Idaho, police killed Victor Perez, an autistic teenager with cerebral palsy. Despite his family stating they were not threatened by Perez, police shot him multiple times in his front yard. Autistic people with more privilege and autonomy must also engage with abolitionist organizing to end police violence and criminalization.

The hypothetical fears of a potential loss of autonomy, privacy, and other basic rights expressed by many late-identified autistic people reflect the present reality for many autistic people who can’t mask their autism, work, live independently, or otherwise have a high level of engagement with services and the state. Disability justice teaches that we must center the needs of community members who are currently most impacted by intersecting forms of oppression, not just fight to maintain our own relative privileges.

Rather than validate ideas that tie our worth to our productivity, we all must affirm the humanity of autistic people who have higher support needs. The strength of the autistic community depends on us acting in solidarity with our most disabled members as we strive for liberation for all.