A Call for Solidarity: Funding Autistic Autonomy
When “Make America Healthy Again” Translates to Attacks on Autistic Communities
Secretary of Health and Human Services Robert F. Kennedy just announced that the agency will identify “environmental causes of autism” by September, in collaboration with “hundreds of scientists.” This is likely news to many researchers who have been exploring the topic of autism for decades, in addition to being a cause of concern for autistics and supporters who view this kind of research as potentially eliminationist, focused on finding a ”cure” for a natural expression of neurodiversity. The notion that autism is driven by environmental factors also underscores the beliefs of the “Make America Healthy Again” movement, which pushes anti-vaccine propaganda and pseudoscience about health, with Kennedy claiming that the United States is experiencing an “epidemic” of autism and suggesting that mentally ill people should be sent to camps.
While social determinants of health, including environmental factors, play a role in many people’s lives, there’s not much evidence to suggest that autism is caused by something in the environment. It is, however, true that social determinants of health are involved in the access to supports, services, integration, and inclusion autistics receive — for example, Black autistic girls are labeled as having “behavioral problems” and often end up in the school-to-prison pipeline.
This announcement also raises echoes of the proposal earlier this year to create an “autism registry” drawn from medical records from across the country. Within days, the agency was already rolling back the proposal, possibly in a reaction to widespread outcry — evidence that pushing back on dangerous policy proposals has an immediate impact. Just days later, the proposal was back on the table and this pivot represents yet another attack on the autistic community.
The confusing moves and unclear messaging are emblematic of the general chaos of the current administration, which has been characterized by capricious and conflicting policy announcements. In the process, it highlighted the need for nonprofit organizations funding or providing services, support, and advocacy with and to the disability community to build sustainability and flexibility into their work in order to adapt to the highly unstable political moment.
Focus Research On Lived Experiences NOT Cures
Disability advocates, including not just autistics but those working in solidarity with them, are deeply concerned by proposals like these. In addition to questions about privacy and how the data might be used, they also spark fears about eugenics; registering an entire class of people lays potential groundwork for future discriminatory policies and practices, as does repeatedly suggesting that autism is a product of someone’s environment, a reminder that the 20th century eugenics movement often regarded social determinants of health, such as poverty, as diseases, rather than factors that drive health disparities.
In a strange way, Kennedy isn’t wrong, in the most technical sense: We should be doing more research on autism and how social determinants of health affect autistic people, perhaps especially in this cultural moment surrounded with so much misinformation. Unfortunately, much of the current research into the topic is cure-focused. Kennedy is fixated on “research” that’s highly duplicative, repeating claims that have been repeatedly debunked and positioning autism as a problem to be fixed, and ideally, eliminated. It is also typically research about autism, driven by the needs and desires of allistic people, with actual autistic researchers and other collaborators left out of research and funding opportunities. Notably, Kennedy has also made, and proposed, significant funding cuts to autism research.
Instead of seeking cures, for example, research could explore pathways for better lives, rooted in a belief in autistics’ fundamental humanity and right to exist in the world — even if they do not, as Kenney implied in comments on an April 16, 2025 press conference, ever pay taxes, toilet independently, or write poems. This research should explore topics such as the inequity autistics face as they try to navigate a world that is built by and for allistics. It’s critical to understand the factors that influence the experience of being autistic in the United States, such as the interactions of marginalized identities and autism: How does being Black, or trans, affect the experience of diagnosing autism and obtaining accommodations, services, and support? How does socioeconomic status affect access to opportunities and full inclusion? How many schools are still using restraint and seclusion instead of inclusive educational strategies? How do climate change and environmental racism affect the autistic community?
Most critically, as journalist Eric Garcia recently put it on the “Disability Inclusion: Required” podcast, talking about his own work in a way that applies to much more than journalism: “What I try to do is I try to include the voices of autistic people across the spectrum to show that their lives are whole, yes, but also to kind of ask the question of, ‘What do they need?’ And meet them where they are.”
What, in other words, are autistics themselves asking for?
Autistic-led organizations — such a Autistic Self-Advocacy Network, Autistic Women and Nonbinary Network, and Foundations for Divergent Minds — are the most suited to do this work and lead this work, whether they are contributing to research, policy advocacy, or the provision of direct services. This is especially true for those with consciously diverse leadership or leaderful structures committed to the principles of disability justice. Resourcing for autism research and services, however, often favors parent-led organizations, an issue true across the board in the disability nonprofit sector. It also tends to privilege larger organizations and those with more longevity, with funders seeking entities that have a proven track record, rather than taking a risk on relative unknowns.
In the current climate, direct services organizations in particular are facing a future of picking up responsibilities abrogated by the federal government even as their funding for these activities is being cut. Funders, meanwhile, are restructuring their portfolios in response to concerns about losing their own federal funding or attracting scrutiny from the federal government, resulting in further budget shortages for these organizations. The stakes for the future of the disability community couldn’t be higher.
Grantmaking in the Disability Space: Funding Autism for Autistics
This is a moment in which autistic organizations need more risk-taking, not less, and they need the support of funders who are willing to expand their capacity to do the work and learn from the work. Younger, smaller organizations may be more nimble, and they bring fresh insight and experience. They also exist within the framework of a system that has historically denied autistic people access to the rooms where the decisions are made, and the opportunities for professional development that could allow them to rise in the ranks of larger, more traditionally-structured organizations. Investing in autistic creativity, exploration, and leadership, along with autistic joy, should be a priority. Borealis Philanthropy’s Disability Inclusion Fund’s 2023 distribution of $430,000 in “Joy Grants” — spearheaded by then-director Sandy Ho, now Executive Director of the Disability & Philanthropy Forum — was a great model for other funders to explore.
Grantmaking in the disability space has to consider not only the systemic barriers that disabled people face, but the way those barriers may interact with activities funders may consider essential or non-negotiable. Navigating complex grant applications with limited resources or diminished cognitive capacity can be an obstacle to accessing funds, for example, as can onerous reporting requirements or a failure in flexibility when it comes to disbursement and reporting timelines. Disabled people may be hesitant to apply for or accept support in a self-rejection cycle as well.
And as much as Kennedy’s derisive comments about the value of autistic lives struck a chord, it’s important to consider how some advocates chose to respond to his claim that autism “ruins lives.” For example, many autistics noted that they do, in fact, pay taxes and play baseball, in the process reinforcing stereotypes about “profound” and “severe” autism that have haunted organizing in this space for decades.
This is a response that leaves some people with intellectual, developmental, and cognitive disabilities out in the cold; some can’t toilet by themselves, or rely on communication boards rather than spoken or signed language. Some of them don’t pay taxes, but do need taxpayer-funded programs to live safely and independently in their community. Some are trapped in institutions, unable to engage with the larger world, an invisible presence. We owe them the same duty of care we owe everyone in a society and we owe each other the reminder that none of us are free until all of us are free.
Implying that people must have worth under capitalism to be valued as members of society only reinforces the disablist thinking behind eugenic attitudes, and those attitudes will ultimately come for all of us, even if we aren’t on the immediate front line.
“Nothing About Us, Without Us”: Advocating for All Our Rights
These members of the community are often left out of advocacy work, and this is a moment to actively and expressly include them — and for funders to clearly communicate that they are included in funding priorities, and must be a part of organizing strategy. They’ve been sidelined by people who should be in community with them, and in this moment, as we all face an existential threat to our future, we need to defend their rights with the same ferocity that we do ours, because they are the same rights. In the conversation about what autistics want, this question applies to all autistics.
Ryan Easterly, Executive Director of the WITH Foundation, which promotes inclusive and comprehensive health care that meets the often highly individualized needs of developmentally disabled adults, articulates the urgency of including autistics as active partners in health research initiatives, saying: “Achieving health equity for people with disabilities is rooted in deep respect for the lived experiences of the community. It’s imperative to listen intently and learn diligently from people with autism and their families. Any initiative impacting this community must prioritize genuine engagement and clearly understand the significant risks it might introduce to their well-being.”
A shift in strategy that reflects the current moment, the historic barriers faced by disabled individuals and organizations when it comes to accessing funding, and the disablism that comes from within the house will better serve the autistic community in the long run. This applies not just to the direct impact of such grants, but to the larger social shifts that come with openly discussing these issues and proactively articulating how to address them.
About the Author
s.e. smith is a National Magazine Award-winning essayist and journalist with a focus on social issues such as labor organizing, disability, death and dying, feminism, LGBQTIA issues, and cultural analysis.