Your Voice Matters: Help Shape the Future of Autism Policy & Tell The Government What Your Family Needs

By Lisa Ackerman

The views in this post are my own. They do not represent the views of the of TACA, IACC, or its member agencies.

For more than 25 years, I have walked alongside parents and caregivers, and I have learned one thing for certain: the autism community is heard only when we speak up where the decisions actually get made. Right now we have one of those moments.

The Interagency Autism Coordinating Committee (IACC) (1) has released its 2026 Draft Strategic Plan (2), and public comments are being accepted through August 20, 2026.

This plan is more than just another government document. It serves as a roadmap that helps guide federal priorities across autism research, services, supports, and policies for years to come. While the IACC does not create laws or appropriate funding, its recommendations influence the direction of multiple federal agencies, including NIH, CDC, HRSA, CMS, the Department of Education, and others.

This Draft Represents Progress

Over the past several months, I have had the privilege of serving on the IACC and participating in the workgroups that helped develop this draft. Hundreds of public comments from families, self-advocates, clinicians, researchers, and organizations helped shape many of the priorities included in the document.

For the first time in many years, I believe we are seeing meaningful movement toward issues families have been requesting for decades. The draft expands discussions around caregiver supports, transition planning, services across the lifespan, workforce shortages, diagnosis, co-occurring medical conditions, community engagement, and accountability. Some of the elements in this draft plan were not included in previous plans.

I encourage you to review the draft plan and previously approved strategic plans. You can find them in the references (3.)

Is the draft plan perfect? No.

Does it include everything every family wants? No.

But it is an important step forward, and public comments will make it stronger. Your lived experience and needs is what we need to hear.

Where Is the 2024–2025 Strategic Plan?

In preparation for creating the draft, I noticed that the IACC website includes the approved 2018–2019 and 2021–2023 Strategic Plans (3,) but I was unable to locate a final 2024–2025 Strategic Plan. It was voted and approved without public comment and without providing a document. It is time for more help for families and individuals living with autism.

Searching this site you can see we have been critical of the IACC in the past. This is an important item to address. Ai can help with analysis of the 2026 draft plan and previous IACC plans. I encourage a look at the differences.

If the 2024-2025 plan was approved (as stated in the meeting recording and minutes,) I encourage it to be made publicly available. Strategic plans are intended to build upon one another, allowing the public to understand how priorities have evolved, what recommendations were implemented, and where progress has—or has not—been made. Transparency and continuity are essential to meaningful public engagement. Providing access to the most recent approved plan would help families and stakeholders better evaluate the 2026 draft and offer informed comments on the direction of future federal autism priorities.

(Just in case you are wondering, I have asked for it. I am still waiting.)

If time is an issue, some ideas to still give input

One concern I have heard is that the document is lengthy and many parents simply do not have the time to review every page. There is an unofficial draft plan summary (4.)

That’s okay.

Parents and caregivers are not expected to become experts on every section of the draft Strategic Plan. You are already the expert on your child and your family’s experiences.

Your story matters.

Your challenges matter.

Where are the gaps of services – that matters.

If diagnostic wait times affected your family, say so.

If accessing therapies has been difficult, share that.

If adulthood, housing, employment, safety, education, medical care, insurance, or caregiver supports remain challenges, tell the committee.

Your lived experience is valuable data.

What I Hope Families Will Consider

As you review the draft—or even if you simply submit comments based on your family’s experience—I encourage you to think about questions such as:

-What challenges has your family faced that should receive greater attention?
-What resources would have helped after diagnosis?
-What services are still difficult to access?
-What research questions remain unanswered?
-What supports are missing for adolescents and adults?
-What changes would make life better for your family?

Every family has a different journey. The Strategic Plan should reflect the diversity of those experiences.

Why Public Comments Matter

Constructive comments help identify gaps, improve recommendations, and ensure the final Strategic Plan better reflects the needs of the autism community.

Whether you submit one paragraph or several pages, your perspective has value.

How to Participate

Public comments on the 2026 IACC Draft Strategic Plan are open through August 20, 2026.

I encourage every parent, caregiver, autistic individual, family member, professional, and advocate to take a few minutes to participate.

The autism community is strongest when many voices are heard.

At TACA, we believe informed families create stronger futures. This is one opportunity where your voice can help influence the conversations that guide autism policy, research, and supports for years to come.

I hope you’ll join us by sharing your comments before August 20, 2026.

You can submit your comments: please send an email to: IACCPublicInquiries@mail.nih.gov

Thank you for participating!