This week, while I was doing Hill visits in Washington, one of my meetings included a Senate office staff member who is the sibling of someone with profound autism. I didn’t know this going in, but as our conversation progressed, her knowing smile made it clear she understood our mission and why it matters.

Moments like this are a powerful reminder that our community is everywhere and that change often begins in very personal ways. That sense of momentum was reinforced this week when Congress finalized and the President signed the FY 2026 federal funding bill. In the Senate’s accompanying report, Congress directed the National Institutes of Health to ensure autism research includes the entire autism population, including those with profound autism.

This is the first time profound autism has been explicitly included in a bill signed into law by a President.

This matters.

Over time, people with profound autism have become increasingly excluded, particularly from research meant to inform care and services. As a result, research has too often fallen short of supporting approaches that truly improve health and connection for our population and those who care for them.

Congress explicitly naming profound autism is an important step forward. It signals recognition that this population has been overlooked and that inclusion must be intentional. At the same time, progress on paper is only the beginning.

Appropriations language does not implement itself. Now the responsibility shifts to NIH to ensure this direction is carried out through how studies are designed, who is included, and how inclusion is tracked.

Our focus now is on:

• Ensuring NIH implements the appropriations language as written, including the explicit inclusion of people with profound autism

• Holding NIH accountable for how autism research is designed, funded, and tracked, so this population is meaningfully included.

Because presence and persistence matter for people with profound autism.

We will continue engaging NIH and Congress to make sure this moment leads to lasting change. We were on the ground in Washington this past Wednesday, and we will keep showing up. Presence and persistence truly can equal progress.