Recap of the April 28, 2026: the first Interagency Autism Coordinating Committee Meeting

By Lisa Ackerman

The first Interagency Autism Coordinating Committee (IACC) meeting for the new federal administration occurred on April 28, 2026. This is your update. At this meeting, the Committee did not simply discuss priorities—it advanced and voted on a coordinated set of recommendations formally transmitted to the Secretary of Health and Human Services for action within existing federal authority.

Background: What is the IACC?

The IACC is a federal advisory committee that coordinates autism-related efforts across U.S. government agencies and provides recommendations to the Secretary of Health and Human Services (HHS). It was established under the Combating Autism Act of 2006 and has been reauthorized through subsequent laws, including the Autism CARES Act. Since its inception, the federal government has invested billions of dollars in autism research, services, and coordination efforts guided in part by IACC strategic plans. The committee includes both federal officials and public members, with the goal of improving outcomes for individuals with autism and their families.

A Personal Note Before the Meeting Recap

It is no secret that I have been a critic of the IACC over the years—through 24 blogs(1,) podcasts, and counting. Since 2006, I have approached each new administration asking for meaningful action to address the autism epidemic and the growing needs of families. Now that I have the opportunity to serve on the committee, it is time to roll up my sleeves and get to work. Below is a recap of the first meeting I attended on April 28, 2026.

Overview of the Meeting

The meeting was held at the National Institutes of Health (NIH), a large and highly secure federal campus. It took place in Building 300, requiring security clearance and a long walk to the sixth floor—reminding all of us that federal processes can be complex even before the meeting begins.

All meeting materials, including public comments, live broadcasts are available on the IACC website (2.) A recording of the meeting is also shared post meeting date usually within a week.

How the Day Was Structured

• Morning: Committee business 
• Afternoon: Review and discussion of four key topic areas (called “attachments”) and proposed recommendations to send to the HHS 

One of the most powerful parts of the meeting was the public input. There were 539 pages of submitted comments, the majority from concerned parents asking for help, resources, and real support for their children and families. Every single comment was read and considered as part of the record. In addition, the committee heard 45 minutes of in-person public comments, where families shared their lived experiences directly. These voices brought urgency and reality into the room—reminding everyone that behind every policy discussion is a family navigating daily challenges and hoping for meaningful change. I encourage anyone interested in autism to participate in the commenting process for all future meetings.

Key Topics Discussed

1. Medical Care & Oversight (Attachments A & B)

These recommendations identify two lanes of government addressing a shared clinical gap.

• EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) for Medicaid
• HRSA (Health Resources and Services Administration)
  Focus: The consistent failure to evaluate co-occurring medical conditions which can result in delayed or missed care. Diagnostic Overshadowing—a pattern where new or worsening symptoms are attributed to an existing diagnosis (autism) rather than evaluated independently.
• Recommendation: Reinforce and implement established standards of care so treatable medical issues are not overlooked. The Committee recommended that HHS direct the Centers for Medicare & Medicaid Services (CMS) to issue formal guidance clarifying EPSDT obligations for children with autism, including structured evaluation of co-occurring medical conditions and safety risks. In parallel, the Health Resources and Services Administration (HRSA) was asked to develop and disseminate standardized clinical guidance and training to support consistent implementation in practice.

2. Profound Autism (Attachment C)

Focus: Federal Research and policy designation—not changing diagnosis, but addressing gaps in existing federal research and policy.
Key Point: Families facing profound autism need urgent, meaningful support. The proposed designation is based on functional criteria—minimal or no functional speech and the need for continuous supervision—intended to improve research inclusion and policy planning for this population.

3. Wandering & Safety (Attachment D)

Focus: Immediate safety concerns related to wandering and elopement which  can result in drowning or traffic related fatalities at a rate significantly higher than the general population.

Key Point: This is a critical and urgent safety issue affecting many families daily.  The recommendation focuses on activating an existing federal alert mechanism—the Missing and Endangered Persons (MEP) category within the Integrated Public Alert and Warning System (IPAWS)—which is not consistently used in autism-related incidents despite clear applicability. This action requires no new legislation or infrastructure, only targeted implementation. On average, 8 kids a month with autism die from wandering and elopement because of this, urgent action was requested.

What Happened During Voting

Some federal members abstained, citing internal agency clearance processes, despite the recommendations being advisory rather than binding. Despite these reservations by some, other federal members did vote for the recommendations as observed in the vote tallies below.

Because of the urgency, the committee prioritized safety:

• Wandering & Safety (D): 34 yes, 7 abstain 
• Profound Autism (C): 26 yes, 13 abstain 
• HRSA (B): 27 yes, 13 abstain 
• EPSDT (A): 27 yes, 12 abstain (no discussion before vote) REMOVE AS THIS SOUNDS LIKE WE DID NOT DELIBERATE
• Final Letter to the Secretary of HHS: 24 yes, 13 abstain, 2 no 

Notably, powerful and impactful comments were shared by Elizabeth Bonker and Cade Larsen during the discussion on profound autism. Upon deliberations, Attachment C was amended after input by Ms. Bonker.

Of note: The recommendations advanced are practical, immediately achievable, and grounded in existing clinical standards and federal authority. Their impact will depend on whether they are implemented.

Workgroups: A Shift in Approach

The committee then discussed bringing back workgroups, which have not been used in the past 5 – 7 years.

There was strong support from public members to move forward with both:

• Workgroups (focused action) 
• A new strategic plan (long-term direction) 

Proposed Workgroups:

1. Communication & Safety 

• Focus: AAC (augmentative communication) and wandering 

1. Medical 

• Focus: Co-occurring conditions, science, and best practices 

1. Lifespan 

• Focus: Needs across the entire autism journey—from early childhood through adulthood and aging 

There was disagreement about leadership structure. While public members supported leading the groups, federal members requested involvement—but no federal members volunteered to co-chair when asked. This discussion was paused for further coordination.

My Observations

• Preparation gaps: Some federal members appeared unprepared for the pace and scope of the meeting, despite a published agenda. 
• Limited authority: Several representatives did not have decision-making authority, which limited progress during votes. 
• Resistance ahead: While there has been prior alignment at leadership levels, resistance is likely as we move forward. 

Final Thoughts

This first meeting underscored both progress and the challenges ahead. Even reaching agreement on the seriousness of the crisis in our community took effort. It was clear that the public committee members were not willing to leave without advancing concrete next steps to the Secretary of Health and Human Services—ensuring that the urgency families are experiencing was reflected in our recommendations.

For more than 20 years, many families have seen IACC meetings come and go with limited real-world impact. You would be hard pressed to find a family who can point to meaningful change in their daily lives because of this work. That has to change. This new committee—and my role on it—comes with a shared responsibility to act with urgency and deliver outcomes that truly matter for families and individuals.

For families, the takeaway is this:
Your voices are being heard—but hearing is not enough. Action is what matters next.

Behind every statistic is a child who needs support, a parent searching for answers, and a family doing everything they can to help their loved one thrive. Those stories were in every page of comments and every voice we heard. They are now in the room—and they must stay at the center of everything we do.

I carry those voices with me into this work. And I am committed to pushing for progress that families can actually feel—real support, real access, and real change.

I look forward to continuing this work and keeping you updated every step of the way.

Resources

1. Past IACC & Presidential 

• What constitutes an emergency? April 2012
• The IACC Reconvenes July 2012
• What the IACC must consider October 2012
• Autism is on the rise again, but don’t worry:  March 2013
• 1 in 88 or 1 in 50: which autism rate will prevail? April 2013
• Do you have a sick child with an autism diagnosis? June 2013
• IACC July meeting recap September 2013
• IACC included in federal government shutdown October 2013
• Autism research funding and redundancy in spending December 2013
• Autism in Minneapolis: 1 in 48 December 2013
• Autism now affects 1 in 68 U.S. Children March 2014
• Why you should care about autism June 2014
• Why would a government panel question universal autism screening? August 2015
• A Change for autism September 2015
• The IACC needs to address autism and wandering. How you can help. January 2016
• IACC is requesting public comments for their strategic plan June 2016
  

Parent survey

• IACC parent survey conducted by Autism Action Network, Safe Minds and TACA – 2018
  

Presidential candidate blogs

• Presidential Candidates: let’s Talk the Autism plan January 2016
• Autism Family plan needed: 15 points to include May 2018
• Presidential Candidates: lets talk autism plan 2020 edition September 2016
• Presidential Candidates: let’s talk about the Autism Plan 2024 edition September 2024
  

Where you can find IACC meetings, attachments, comments and soon to be meeting recording: https://iacc.hhs.gov/meetings/iacc-meetings/