Update On The Interagency Autism Coordinating Committee Strategic Plan Vote

What a week it has been. I spent yesterday at the National Institutes of Health watching the Interagency Autism Coordinating Committee (IACC) meet to discuss and vote on their draft strategic plan.

Prior to this, I had reached out to all of you to let you know that the public comments that were submitted in the last few days of the comment period had not been distributed to the committee for review until the day before the meeting.

As you'll recall, we were originally given four days to provide feedback on the 339-page draft plan. Your positive advocacy helped get that deadline extended. But if you were one of the majority of commenters who submitted their comments near the deadline, they were not read.

Federal law requires the IACC to "make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions" (42 U.S.C. § 280i-2(b)(4)). That duty has been on the books since 2014. Posting comments the day before a vote is not what integration looks like.

Here is a breakdown of public comment themes:

Public Comment Focus

IACC public comments · Aug 1–20, 2026 · n = 4,121 · full breakdown

#	Theme	Count	Share
1	Vaccines / autism cause	2,415	58.6%
2	Profound autism	655	15.9%
3	Employment	297	7.2%
4	Genetics / precision medicine	209	5.1%
5	HCBS / Medicaid waitlists	199	4.8%
6	Seizures / epilepsy	179	4.3%
7	Respite care	165	4.0%
8	Gut / microbiome / GI	162	3.9%
9	ABA therapy	127	3.1%
10	Communication access / AAC	127	3.1%
11	Abuse or neglect	117	2.8%
12	Mitochondrial / metabolic	101	2.5%
13	Suicide / self-harm / crisis	95	2.3%
14	Spelling-based methods (S2C/RPM)	85	2.1%
15	Elopement / wandering	80	1.9%
16	Neurodiversity framing	64	1.6%
17	Institutionalization concerns	64	1.6%
18	Direct-care workforce	51	1.2%
19	Insurance coverage	35	0.8%

Source: IACC public comment packets, Aug 1–20, 2026 (7 packets, 4,121 comments). Analysis conducted using Claude (Anthropic AI) on behalf of the Profound Autism Alliance. Categories reflect themes mentioned in each comment, not support or opposition. Independent analysis, not an official IACC or federal tally.

I am so proud of the many, many of you who sent messages, asking the committee not to vote until your voices were heard. And I'm grateful to the federal members of the committee who asked to be given time to read our comments prior to voting.

The chair of the committee stated yesterday that "delay is not neutral" and talked about efficiency. Here are more of her comments on the need to consider comments on the current draft. They are worth watching:

It was difficult to witness this, as I had hoped that the spirit of collaboration would carry the day. But I'm a firm believer in moving forward, focusing on positive advocacy. My experience has shown that in the long run, it works.

We will continue to show up and advocate. We will continue to point out when we are excluded. We will find collaborators and champions and get things done. Because our loved ones with profound autism deserve nothing less.

Onward,

Judith Ursitti