IACC March Meeting Public Comment

To the Interagency Autism Coordinating Committee,

My name is Cheyenne Ver Voort, and I am someone who has spent many years supporting autistic people across the lifespan. I have worked with autistic children, adults, and aging individuals in many different roles, including mental health, crisis support, residential services, behavior support, and care management. I also have autistic friends and loved ones in my life. Some of the people I know work. Some do not. Some need a lot of daily support and others need very little. What they all have in common is that their lives matter.

One thing I hope the committee keeps clearly in mind is that autism is not a tragedy. Disabled lives are worth living. When the conversation about autism focuses too much on eliminating or preventing autistic people, it sends a dangerous message about whose lives are valued. History has shown us how quickly that thinking can slide toward eugenics. It is important that federal policy about autism always send a clear message that autistic people belong in our communities and that their lives have value.

It is essential that the work of the Interagency Autism Coordinating Committee meaningfully center the voices of autistic people themselves. People with lived experience should not just be consulted occasionally; they should be listened to and included in shaping research priorities, services, and policy decisions. Autistic people understand their own needs, challenges, and strengths in ways that outside observers often miss. Listening to people with lived experience leads to better policy and better outcomes.

Community matters. People do better when they are supported in their homes, neighborhoods, and relationships. I have seen firsthand how important it is for autistic people to have access to real community supports. When those supports are missing, the alternatives are often isolation, crisis, or institutionalization. Institutional settings are not only harmful to people, they are also costly and damaging to communities. Investing in community supports is better for everyone.

For community living to actually work, people need access to services, supports, and resources. Right now too many families and autistic adults are navigating long waitlists, confusing systems, and gaps in care. At the same time, the people doing the day-to-day support work—direct support professionals, caregivers, and providers—are often underpaid and stretched thin. These workers deserve fair pay and stability. Without them, the systems that support autistic people simply cannot function.

Mental health support is also a critical piece of this picture. Many autistic people experience anxiety, depression, trauma, or burnout, often because they have spent years navigating systems and environments that were not designed for them. When people have access to appropriate mental health care that understands autism, they are far more able to maintain stability, build relationships, work when they want to, and participate meaningfully in their communities. Mental health care should be seen as a core support, not an afterthought.

It is also important to be clear about the harms caused by so-called autism cures or harmful treatments. Many products and interventions have been promoted over the years without real scientific evidence, and some have caused serious harm. Research and policy should move away from trying to cure autism and instead focus on supporting autistic people to live healthy, meaningful lives. The priority should always be safety, dignity, and quality of life.

It is also important to recognize that many policies keep disabled people trapped in poverty in order to receive services. Financial limits and benefit rules often prevent autistic people from building stability or independence. These policies hit the most marginalized members of our communities the hardest, including autistic people of color, autistic immigrants, LGBTQIA+ autistic people, and people with higher support needs.

I hope the committee continues to prioritize research and policy that actually improves the lives of autistic people like research about services, communication supports, healthcare, mental health care, and ways to help people live full lives in their communities. 

Thank you,

Cheyenne Ver Voort