Support autism by fixing systems, not people (opinion)

In recent weeks, there has been a notable shift in how — and how much — our society thinks and talks about autism. The current administration’s focus on the topic has led to increased public attention and renewed debate around treatment and support. However, while raising awareness can be a positive step, in this case, much of the attention has been completely disconnected from the lived experiences of autistic people and their caregivers.

Initiatives such as the proposed national registry for autistic people, which the U.S. Department of Health and Human Services (HHS) quietly walked back after widespread backlash, highlight just how misguided these efforts are. Rather than addressing the real needs of autistic people and their families, measures like these reflect a fundamental misunderstanding of the diagnosis. Meanwhile, organizations and programs that actually deliver effective services and supports are being hollowed out by funding cuts.

Recognition and respect

It’s important to acknowledge that the autism community is not a monolith. It encompasses a broad range of experiences, voices and perspectives. Likewise, autism itself is a complex diagnosis. It can present in a variety of ways, including differences in social interaction and communication, and concurrent medical and mental health conditions. As a result, the kinds of supports that autistic people need can be diverse and wide-ranging.

For families and caregivers, navigating an autism diagnosis can be extremely challenging. In a recent essay for The New York Times, one mother recounted the difficulties of watching her daughter experience a regression just before her second birthday. Although she disagreed with Robert F. Kennedy Jr.’s appointment and much of his agenda, she found aspects of her daughter’s reality echoed in some of his comments.

At the same time, many autistic people find the notion of a “cure” for autism deeply troubling. Their concerns are valid. There is space in our society for autistic individuals — and people with disabilities more broadly — to thrive. With the right supports, many people with intellectual and/or developmental disabilities can live independently, contribute meaningfully to their communities, and lead fulfilling, self-directed lives.

These perspectives are not mutually exclusive. Both the challenges faced by individuals and families and the dignity and rights of autistic people deserve recognition and respect. However, neither can be fully addressed under an administration that has consistently sought to cut funding and undermine the work of programs and departments like Medicaid, the Department of Education, and the Administration for Community Living.

Real investment

If the administration is serious about supporting the autism community, there are meaningful, evidence-based steps it could take. It could ground messaging and public policy in credible, scientific autism research, rather than relying on unfounded claims and misinformation. It could promote further research instead of reducing the funding available for the very studies that could help organizations and providers better understand and serve this population.

It could also invest in the infrastructure that already exists. Many proven supports, including early intervention programs, home and community-based services, and supported employment, are severely underfunded. If the goal is to improve outcomes and quality of life for autistic people and their families, we need sustained and expanded investment in these areas.

Perhaps most importantly, efforts to develop policy and distribute resources, both for autistic people and the wider disability community, must center on the voices of those directly impacted. That means working in true collaboration with autistic people, people with disabilities, their families, researchers, clinicians, and disability organizations to make sure policies and programs genuinely reflect community needs.

Stop labeling

Viewing autism as something to be “fixed” is not the path forward. We must move away from harmful narratives that pathologize neurodiversity and toward a model of care that fosters dignity and independence. The approach taken by the current administration so far — top-down and overly focused on labeling people — has understandably generated distrust. Policies should not be thrust upon people without consent or consultation.

What’s needed now is deeper public understanding, inclusive policies, and expanded resources for disabled people — and for the people who support them every day. Families and caregivers face immense challenges with limited assistance, and they deserve more than empty rhetoric.

Too often, autistic people are treated as inherently flawed when, in fact, it’s our attitudes and assumptions about what it means to be a valued member of society that need to change. That begins with listening and building systems that recognize differences not as deficiencies but as a part of human diversity. We must stop defining people by their perceived limitations and start investing in their full potential.

(Kerry Delaney serves as the CEO of Care Design New York (CDNY), whose mission is to assist individuals with intellectual and/or developmental disabilities to get support and services.)