Advocates Discuss How Best to Support the Autism Community

President Donald Trump and Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. have made it plain that they view autism as a disease in need of a cure.

As an autistic man, I beg to differ, and many fellow autists and medical professionals agree with me.

Nationally, a recent estimate from the Centers for Disease Control and Prevention (CDC) reported that one in 36 children in the United States have some form of autism. Numbers are rising, but this is largely due to better diagnosis, not increased incidence. The list of historical figures who might have been on the autism spectrum, but were never diagnosed as such, is long. People with autism have made major contributions to society, including singer David Byrne and actor Anthony Hopkins.

Nonetheless, the Trump administration insists on treating autism as a disease. In April, HHS even proposed creating a registry of all people with autism in the United States. Advocates forced the federal government’s hasty retreat from this plan, but the HHS anti-autism crusade continues.

For example, last month Kennedy vowed at a cabinet meeting that “by September, we will know what has caused the autism epidemic, and we will be able to eliminate those exposures.” Years before, Kennedy had already spread a long-debunked conspiracy theory that vaccines cause autism. Yet even as the Trump administration pathologizes autism, officials are slashing programs autistic people rely on, from Medicare to the Department of Education, and are even cutting research funding.

This is why many autistic people—myself included—remain alarmed that Kennedy’s autism data collection efforts still amount to a de facto registry. The American Civil Liberties Union (ACLU) echoed that concern in a recent letter to the Trump administration.

If you work for a nonprofit or consider yourself an activist and wish to support the autism community, here are some things to know.

We Are Not Broken

Jolene Stockman is a 46-year-old instructional designer and author from Aotearoa (the Māori name for New Zealand). She is both autistic (takiwātanga) and has ADHD (aroreretini). She summed up succinctly a position held by many in our community.

“When autistics are asked to identify research priorities, they call for centering lived experience, education, and support—never cures, treatments, or fixes,” Stockman told NPQ, adding that “cures” are read by many in the autistic community as erasure.

Along with being scientifically unsound, efforts at cures, she noted, “are dehumanizing, disappointing, and wasteful.”

“Why aren’t we asking [people with autism] how they feel about these policies? What kind of support they need? What research they find valuable?”

“They’re also missing a huge opportunity,” Stockman added, “to make the world better for everyone. We all deserve to be loved and supported, and to live a good life in whatever way we choose and the way we treat our most vulnerable people tells the world a lot about us.”

Fiona Rattray, a disability rights advocate at Westchester Independent Living Center’s satellite office in Putnam, NY, told NPQ that she thinks Kennedy’s views are “shaped by a narrow segment of the autism community—specifically, some parents of profoundly disabled children searching for someone or something to blame.”

“Unfortunately,” Rattray emphasized, “his approach is riddled with confirmation bias and a lack of scientific grounding.”

Rattray believes there should be more research on autism, but not “when it’s used to fuel fear or promote ableist narratives,” she said.

Rattray notes that the autistic community itself can help guide research: “Why aren’t we asking [people with autism] how they feel about these policies? What kind of support they need? What research they find valuable?”

Where Safety-Net Support Is Needed

Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, told NPQ that while she is sympathetic to people’s fears of a registry, she’s more concerned about support cutbacks and related economic suffering.

“Certainly, the cuts in Medicaid are a huge and present danger….We saw that in the proposed budget,” she said, as well as how the government has talked about restructuring HHS.

“There is a lot there that will have really damaging effects, kind of ‘knock on’ effects for people with all kinds of disabilities, such as getting rid of the Administration for Community Living, which promotes policies that keep people out of institutions,” Gross said. “That’s just one example of how these cuts structured will negatively affect us.”

The Congressional Budget Office estimates that around 8.6 million people will lose healthcare due to these cuts, including many people with autism.

“They’re doing things like putting in job loss penalties, making people redetermine their eligibility for Medicaid several times a year, reducing the federal match rate for states that provide Medicaid services to undocumented immigrants out of state funds,” Gross added. “They’re also doing other kinds of things that will all have the effect of reducing people’s healthcare, or fewer people having healthcare, because of Medicaid being cut so drastically.”

This is where nonprofits and activists can and, arguably, must step in to fill the void.

“What people can do now to defend Medicaid is to speak out to their members of Congress and let them know that they won’t stand for Medicaid cuts,” Gross said. “We have ways to do that on [the Autistic Self Advocacy Network] website. If you want to place a call but can’t use the phone, for example, we have a proxy calling project where a volunteer will place the call for you. Those are some ways to get involved.”

We’ll Need Each Other—and Our Allies

“There are several advocacy organizations out there, each with a different lens,” Rattray said. “The Autistic Self Advocacy Network and Association for Autism and Neurodiversity prioritize acceptance, self-determination, and neurodiversity.”

She contrasts these groups with organizations like Autism Speaks, which “have historically focused on cures and behavioral conformity, which many self-advocates find alienating.”

Rattray added that “beyond formal organizations, there’s a thriving peer-support movement online. Many autistic individuals find community through Discord servers, Facebook groups, Reddit, and other platforms.”

Stockman echoed the benefits of a vibrant online community, which nonprofits and activist groups can encourage loved ones with autism to join.

“Our greatest advocacy tool is community,” Stockman said. “Finding each other, online, face to face, interest groups, or local spaces. Validating our experiences and figuring out what works.”

Scientists largely concur with this assessment. Lawrence Fung, director of the Stanford Neurodiversity Project, told me in 2023 that “most neurotypical people do not understand the world of the neurodiverse people, and vice versa.”

“Our society is stronger and more innovative when we include and uplift all kinds of minds.”

Because of this lack of empathy for common autistic behaviors, like poor eye contact and social awkwardness, the 80 percent of the population that is neurotypical regularly imposes on the 20 percent that is neurodivergent “poor outcomes in both educational and employment settings.”

Looking Forward

When it comes to federal policy, a lot remains uncertain. “I don’t know anything about RFK’s [Kennedy’s] policies for sure, nor do I sense I should trust what is stated in a press conference due to the lack of clarity, transparency, and evidence-based reasoning behind his statements,” Kara Kushnir, clinical director at A Work of Heart Counseling & Wellness in New Jersey, told NPQ.

Kushnir works with parents and families who have children on the autism spectrum. She reflected on the actions HHS and Kennedy are taking: “My greatest concern for clients/the families I serve, and my own [autistic] sibling is the unknown, and that the captain of the ship is someone with no formal medical training, lived experience, or professional experience working with autistic individuals.”

She added that “as a provider, the rhetoric [Kennedy] has used to discuss autism is steeped in ableism, which is problematic at best and dangerous at worst.”

Rattray expressed a similar perspective: “In my family, we live with Autism Level 1, and that gives me a deep appreciation for the richness that neurodiverse perspectives bring to society,” Rattray said. “I believe we should be celebrating neurodiversity, not trying to fix or erase it. Our society is stronger and more innovative when we include and uplift all kinds of minds.”

This is why she believes that “ultimately, decisions around policy, research, and services should be guided not by how ‘useful’ we think someone is, but by what they need to live with dignity, agency, and support.”