Accessing Autism Services in Times of Change

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of “Parenting Without Panic.” Brenda is a mom of three, and her eldest is an Autistic woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

When it comes to autism services and federal or state funding, one of the most common things I hear from Autistic adults and families is a mix of confusion and exhaustion: confusion about how systems work and what applies to them, and exhaustion from navigating processes that are complicated, inconsistent, and difficult to trust. Many people are told they “should qualify,” yet face repeated barriers. Others worry that a single change, such as a new job, a medical diagnosis, or a policy shift, could put essential supports at risk.

That confusion and exhaustion feel heavier right now.

Many people are facing uncertainty about public benefits, insurance coverage, and disability supports. Information is often outdated or contradictory. Even professionals who work in these systems don’t always have clear answers. For Autistic adults and their families, this uncertainty isn’t abstract. Access to health care, housing, and income stability often depends on navigating these systems accurately and avoiding mistakes that can be difficult to undo.

Part of the challenge is structural. Most benefits systems were not designed with Autistic adults in mind. They assume linear work histories, stable income, and fixed levels of need. Many Autistic adults work or want to work, but need flexibility in order to sustain their health and well-being over time. Support needs can also change. As a result, individuals and families are often left making decisions, such as whether to increase work hours or accept a new role, without knowing how that choice might affect eligibility for health coverage or income supports.

I see this play out regularly through AANE’s work. People do not come to us looking for guarantees. They come looking for clarity. What are my options? What should I be careful about? How do I plan when the rules keep shifting?

That is why our February conference focuses on safeguarding supports and navigating benefits in uncertain times. We are hearing these questions with increasing urgency. Autistic adults, families, and professionals are all trying to understand how to protect access to care and income while keeping Autistic voices, priorities and autonomy at the center.

Accessing services should not require constant vigilance or insider knowledge for the privileged few. Yet for many people, it still does. Until systems become more accessible and humane, AANE will continue to show up with practical guidance and a steady presence.

If you are feeling overwhelmed, you are not failing. These systems are hard. You do not need to solve everything at once. Learning how to ask the right questions, and knowing you do not have to do it alone, is a real and meaningful start.