The Interagency Autism Coordinating Committee (IACC) helps direct U.S. Federal autism policy. We are concerned by how Health and Human Services Secretary RFK Jr. reshaped the current IACC’s membership to better fit his questionable views on autism. And we are grateful to long-time autistic advocate and former IACC member Sam Crane for her precise commentary on August 27th’s IACC meeting—including its less commendable as well as its promising efforts.

Crane attended the IACC meeting in person, and reported live via our Bluesky account. The following is an edited version of that reporting.

Background on the IACC

The IACC has a big responsibility—it makes recommendations about millions of dollars in federal autism research funding. It includes representatives from federal agencies, like the National Institutes of Health and the Centers for Medicare and Medicaid Services, and also representatives from the public (also known as “public members”).

My history with the IACC is personal—I served as one of the public members for two terms, from 2014 to 2024, before I was term-limited off the Committee.

The IACC has never been perfect. For almost its entire history, autistic people were barely included on it. In 2019, Congress changed the law to require that three people on the committee be autistic—but that’s still very much a minority. Also, it was often a struggle to push for more research on services and supports, and the needs of adults.

The IACC was created for two reasons: to ensure coordination among the agencies that fund autism research, and to promote public input into autism research priorities. It provides a chance for the whole community to give input on autism research. Every single member of the public is supposed to be able to comment on the strategic plan—and all other materials for committee consideration.

But that isn’t what’s happened since earlier this year, when the IACC was totally overhauled and all public members were replaced. The new Chair is, for the first time, not a regular federal employee. Also for the first time, none of the biggest autism advocacy organizations (like ASAN, Autism Society, or Autism Science Foundation) are represented on the Committee.

In April, the Committee voted on several proposals without any public input at all. All of the proposals had been published onto the website after the deadline for members of the public to submit any comments.

Then, in July, it proposed a whole Strategic Plan without any public comment period before drafting. There was also ZERO transparency into the drafting process. Initially they only wanted to give the public four days to comment on a 330+ page plan! They ultimately changed the deadline to August 20 (a week before the meeting)—but then the comments submitted right before the deadline weren’t even provided to members until the day before the meeting. That’s MOST of the comments—including ALL comments by major autism organizations, thousands of pages. As of the date of the meeting, they had not been read.

Many disability organizations had concerns about this fact leading to the meeting, and issued a joint statement calling for the IACC to actually read their comments before voting. That statement included a wide range of organizations that don’t agree on almost anything else—all united around the idea that they should all get a chance to be heard.

The Draft Strategic Plan

By law, the IACC is required to periodically publish a Strategic Plan. It makes recommendations about autism research topics and includes a budget recommendation. Past Strategic Plans have been much shorter and focused on autism research, with an overall bottom-line research budget recommendation that’s usually quite a bit more than what the NIH actually ends up getting. The last Strategic Plan also included an Easy Read version.

The draft that was discussed at this meeting was longer, and had a lot of differences—some good, some bad. The draft scrapped the previous framework to categorize autism research and instead proposed a few new standalone, biomedically-focused research initiatives (including one studying “regressive autism” and another focused on “precision therapeutics”), plus a bunch of research recommendations on “priority therapeutic domains”—all of which are biomedical.

Everything that is not biomedical, including communication, community-based services, early screening, and education—is now categorized as “life course domains.” These are specifically described as “implementation” domains, not research domains, and they come with no research funding.

Some of those biomedical domains are important—for example, the “priority therapeutic domains” include epilepsy, motor issues, sleep issues, and dysautonomia. It’s hard to argue that the IACC’s “priority therapeutic domains” aren’t important to study.

But what’s notable is what they DON’T include: communication broadly, executive dysfunction, social interaction, mental health. This wouldn’t be an issue per se if it weren’t for the fact that these domains that come with actual funding targets, and the other domains don’t.

There are some other concerns about what’s included here: one proposed priority therapeutic domain is research on “drug repurposing”—taking medications approved for something else and approving them for autism, possibly just specific sub-groups. But what symptoms are they targeting? How will they decide what interventions to provide?

Again this could be used well—but it could also be used to approve risky interventions like chelation or hyperbaric oxygen therapy—treatments that *are* approved for completely different conditions but have real risks when applied to autistic people, even “specific subsets” of population.

(As a personal aside—it’s odd to see people talking about how much of a concern polypharmacy (people prescribed many different medications at once) is, while dismissing the concerns of people who they view as “high functioning“—for many of us, “functioning” is dependent on taking many meds at once.)

I don’t inherently mind separating biomedical issues from “life course” issues. What I do mind is the idea that “life course” issues aren’t research topics in themselves, deserving of research funding.

The way government works, not putting a funding target for research on these topics can mean deprioritization, especially when (as here), proposed spending exceeds what Congress has actually appropriated.

Or to put it in more plain language—if a plan says you have to spend a certain amount of money on some things, but then just says “also do these other things,” the things that have a specific money target are the ones that get done. The others get treated as optional.

I’ll add that the Strategic Plan has inconsistencies along these lines. For example, while it says that Life Course Domains are about “implementation” (that is, ensuring that federal programs meet people’s needs, rather than about learning new things), there’s a bunch of research recommendations in that section. But I guess that research has to come from somewhere else other than NIH—which is an issue, because almost all federal autism research is funded by the NIH.

Aside from, you know, not having any money attached to them, some of the life course domains had good stuff in them. The Communication domain calls for clarifying rights to effective communication and improving access to communication-related interventions. It also discusses challenges with IQ and other tests when administered to people with communication-related disabilities—people may know answers but be unable to show their knowledge.

Other parts are iffy. The Housing section had language promoting intentional communities or expressing skepticism of rules requiring HCBS to be provided in actually integrated settings. It also calls for building new housing models—but for most people, the issue isn’t that people want to live in a new kind of congregate setting that hasn’t been built. It’s that they can’t afford an apartment near their support system, and can’t get services to support them there. Some issues in this part of the Plan are real–it’s hard to find affordable, accessible housing with the level of in-home supports people actually need. But the issue isn’t that regulations make it too hard to build congregate settings.

The Meeting Begins

As an aside, I almost didn’t come to this meeting in person because the IACC website said that in-person registration was required, that the space was too full, and no more in-person registrations would be processed. I ended up complaining directly to the staff, and was told that, actually, there’s an overflow room, and I could just show up without registering. When I got there, the overflow room was totally empty and the main room had plenty of space. Not sure what’s up with that!

At the meeting, Dr. Sylvia Fogel, the new Chair of the IACC, started off by preemptively addressing concerns about whether the Committee was reading the comments. Almost the entire first hour was a spiel by the Chair and a few allies about how there was “too much urgency” to delay a vote until members could actually read through the comments—which is extremely weird compared to previous meetings (more on that later).

Also early on in the meeting, Dr. Fogel took some time to defend against concerns, raised in the previous meeting and afterwards, that they had violated the Federal Advisory Committee Act (FACA) in their last meeting—by forcing through a vote on materials that hadn’t been released for public comment without any explanation of how they were drafted.

She claimed that the Office of General Counsel looked it over and said it was OK. Meanwhile—outstanding requests from the public for even basic records about that meeting/drafting process, such as the identities of who voted how, have been unanswered since May.

Public Comments “Read” by AI

Back to the public comments on the Strategic Plan: in an attempt to show that the comments were being considered, Fogel presented a chart she’d created using an LLM, which she’d used to count how many comments support or oppose the plan.

This was a big problem because a lot of stuff in the Strategic Plan isn’t bad—so almost nobody was going to simply outright oppose the plan. Most organizations and individuals that I know instead submitted specific, constructive recommendations for the plan—that may or may not have been read by any human beings.

Here’s an example: The Strategic Plan included funding targets for a bunch of biomedical questions, like dysautonomia and motor issues. These are important issues, but the Plan has essentially NO funding targets for research on any other questions, and assigns many important questions to agencies with no dedicated Congressional funding. That includes research on services, research on lifespan issues, research on employment outcomes etc.

Typically, the career staff supporting the IACC also presents a summary of public comments. But they also just provided a stripped-down, AI-generated analysis, probably also because there just wasn’t time to sift through all 4,778 comments. Instead they presented a high-level analysis of common themes in the comments.

They coded the comments into 17 themes, like vaccines or housing, using AI-assisted analysis and simply presented a count of how many comments mentioned each theme. Again, that doesn’t include any real analysis of what people were saying, what specific revisions they asked for, or what anyone’s reasoning was.

The staff then said that the full analysis of the comments would be posted online later (after the committee had already voted on the proposed Strategic Plan, when the comments can’t actually have an impact).

The meeting also heard oral public comments—that is, people who had signed up to directly present their comments to the Committee. There were about a dozen of these, and they are the only public comments we know for sure the Committee actually heard or read. The oral public comments included a range of opinions, from criticism of the Strategic Plan for not specifically identifying vaccines as a cause of autism, to complaints about lack of access to community-based supports. I discussed several more comments in the Bluesky thread, but am cutting for length.

The only oral public comment that came from an established autism advocacy organization was from Alycia Halladay from the Autism Science Foundation. While she supported many parts of the Plan, she criticized its deprioritization of genetic research (which is often relevant to treating co-occurring conditions), including genetic-environmental interactions. She noted that it had no clear way to track lot of the data the Plan was proposing to collect, and that the Plan proposed a lot of new programs and projects with no clear way to fund them.

And she also urged the IACC to actually read the public comments before voting.

Deliberation on the Strategic Plan

After hearing the oral public comments, the Committee moved on to discussion of the public comments—again, even though many hadn’t actually read many of them.

First off, the Committee was at this point considering a draft with revisions that had been added just a few days before the deadline for public comment. I hadn’t seen them before the deadline (and the Wayback Machine agrees with me that they weren’t actually posted to the IACC website by then), but others I’ve talked to say they saw them before then. I don’t even know why or how.

Starting off, NIH Principal Deputy Director Matt Memoli specifically noted that the NIH (National Institutes of Health) is working towards more investigation of vaccines as a cause of autism. (Editor’s note: Vaccines have nothing to do with autism.) Others noted that they are “agnostic” about what the exact environmental trigger might be and that “this plan closes no door”—could be vaccines, could be something else.

Other members disputed Halladay’s comments, arguing that “nothing in this plan suggests that genetic work should not continue,” and that the Plan mentions genetics and other similar topics “all over the place”—except, I guess, for the fact that includes no funding targets for research on those topics. That’s the problem, this whole plan is supposed to be a basis for budget estimate, if you don’t put it in the budget it may as well not be there.

This is really a summation of issues with this Committee: Failing to meaningfully engage with the comments people are making. There is unusual unity among autism advocacy orgs that this plan has structural problems, and IACC’s answer is basically “no it doesn’t.”

I have my own opinions about environmental theories of causation—but it really shouldn’t be controversial to say that even if you increase funding for studying environmental causation, you need to actually need to fund other things too. Not just genetics—services, supports, life course, etc.

There was also an extended discussion on hot-button issues, such as causation of autism. There seemed to be a consensus that autistic people are so diverse that there are likely different causes for different people. The Committee favored “cohort-based investigations” to see if there are different causes for different “types” of autism.

One member, Walter Zahorordny, was skeptical that the rise in autism diagnosis rates is due to increased recognition of autism—saying that this is leading people to fail to search for environmental triggers. (Editor’s note: Zahorordny is widely considered an autism epidemic conspiracy theorist.)

While it’s not totally unreasonable to conduct research into “subgropus” of autism (people often have different genetic markers, etc. that may lead to different health issues or support needs), I suspect this is going to be used to justify separating “profound” from “non-profound” autistic people. Diversity among autistic people doesn’t mean that all people with higher support needs are the same or can be lumped together—some genetic markers have a wide range of support needs associated with them.

The Committee also discussed a massive recommended outlay of funds specifically to study “regressive autism.” What is triggering/driving skill loss is an important question, and there’s a real possibility that treatable medical issues can be part of it for many people.

But the framing they are using is not necessarily reflective of many people’s experiences—while plenty of autistic people lose skills at some point in early childhood, this is often in people who already had developmental concerns. And skill loss can happen at other ages too, including adulthood. I was concerned about whether this initiative will address that full range of experiences, since their focus seemed to be on children who appear to be developing normally and then lose many skills at 18 months (very consistent with vaccine-causation theory).

And vaccines were, indeed, a big part of this discussion. Many members raised them explicitly and even when members didn’t necessarily endorse vaccines as a cause of autism, there was a suggestion that skill loss might be caused by an immune problem.

This is personal to me—I have seen friends lose skills, often catastrophically. I, and they, would love if we could somehow find a medical cause for that that comes with a possible treatment. Not a cure for autism itself, but a way to improve communication/self care/etc. And frankly immune triggers may have been part of it for some friends—particularly those who developed long COVID or chronic fatigue syndrome (CFS)! But this laser focus on vaccines, prenatal “environmental assaults”/thimerosal is not helpful.

Similarly there was some discussion over whether the Strategic Plan should specifically include recommendations on studying PANS/PANDAS—with some federal members expressing concerns that these conditions aren’t autism-specific and thus outside the scope of what should be in the Strategic Plan, which specifically concerns autism research. Scope is a real concern here—by analogy, nobody would dispute that autistic people often have epilepsy, but we wouldn’t normally include broad epilepsy research in the Strategic Plan for autism research—except for studying interaction between epilepsy and autism.

That doesn’t mean that there aren’t real concerns about making sure that medications don’t interact and are safe to take long-term, just that this is another case where functioning labels completely flatten perceptions of autistic people.

The Committee also discussed the community’s “mixed opinions” on the term “profound autism”—one federal member noted that community members feel this term masks the abilities of many autistic people, and the IACC’s definition is different from the one used in research, making it hard to track research. She wanted “profound autism” to be replaced with specific descriptive profile, such as presence of communication disability, intellectual disability, or “need for continuous supervision.” Unfortunately, this was shot down because the Committee already voted to approve their definition of “profound autism,” without community input, in April.

Another member weighed in saying that if they were to change the term, it would need to be with “biologically anchored criteria”—exactly what that means is very unclear! Their definition of “profound autism” is itself not biologically anchored.

Judith Cooper, a federal member from the National Institute on Deafness and Other Communication Disorders, proposed an amendment to have communication addressed in precision therapeutics, which Laura Cellini argued is “duplicative” of the section on communication later in the plan as a “life course domain.” This is a problem, because, as I noted already, the Life Course Domain section has no research funding targets. Ultimately, Dr. Fogel agreed to put in a budget for communication research, at about $12 million out of the over $633 million proposed budget.

There was some good discussion about the Life Course Domains in here too—for example, Elizabeth Bonker, a nonspeaking autistic IACC member, delivered a presentation on communication access. Caden Larson, another nonspeaking autistic IACC member, discussed how his communication supports helped him get a cancer diagnosis and access lifesaving treatment.

At one point they discussed adding issues around sedation for some medical and diagnostic procedures to the Communication life course domain—while sedation is important to many of us, it is unclear why this would belong under Communication, when sedation needs don’t always stem from communication-related issues.

One good suggested revision during this discussion was adding a recommendation around options to let autistic adults remain in existing family housing following death of a caregiver. Great idea, but… at the risk of repeating myself… WHERE IS THE FUNDING?

More AI Shenanigans

During the deliberation, many public members weighed in appreciatively of the AI analysis of the public comments. One, for example, said that she had initially started reading the comments but that they were too triggering (many comments submitted long before the deadline were distributed to members further in advance—most of these were personal testimonials). So instead, she fed them into an LLM and asked it to show her comments that would “relate to everyone.” Again, this is not going to give you any information about concerns with the Plan itself.

Not all members agreed. Scott Robertson, an autistic federal member representing the Department of Labor, noted that he and other autistic members of the Committee have information processing disabilities. This made it impossible for him to meaningfully digest the 5,000+ pages of comments he received the day before the deadline.

(I would suspect that nobody has the information processing capacity to read 5,000 pages of comments between a Wednesday afternoon and Thursday morning! One member claimed to have done so—but then discussed just one comment, which he described as simply urging the Committee to pass the plan.)

In response, another member (who I believe was Caden Larson – I didn’t have good line of sight) told Dr. Robertson to simply use AI to summarize the comments, as he did.

(Dr. Robertson also noted, for the record, that the Chair, Sylvia Fogel, kept referring to him as Scott, despite the fact that he has a Ph.D—even though she referred to others with doctorate degrees as “Dr.” After he finished his comment, Fogel initially said “thank you, Scott,” before correcting herself to say Dr. Robertson.)

I get that it’s often hard to read this many public comments—I have read them too, and this round generated an unprecedented volume of comments! But telling an LLM to simply show you specific comments that you want to see, or simply asking it to summarize nearly 5,000 comments, is not fulfilling your duty.

And I want to be clear that I personally am not 100% against LLMs. Some of these comments were just copy-pastes of the same letter over and over – I think it’s okay to separate those out and just count them. You could also use it to help identify comments with substantive suggestions, to save time reading through comments that just contain personal anecdotes and generic expressions of support and opposition. But you still have to read the substantive suggestions!

All of the major autism organizations submitted substantial feedback, including some support and some requests for revision. I fiddled with a few different LLM prompts—it took several tries before any of those prompts captured those organizations’ concrete suggestions, and none resulted in a complete list. It’s not acceptable to simply reduce advocates’ hard work to provide feedback on the plan by reducing it to a number counting how many comments provided “mixed” feedback.

(I want to note here—if I refer to people without their name, it’s because I don’t have a very clear line of sight on the whole committee and often can’t see either the person or their name placard—not intended to imply some people are more important than others.)

As the Chair pushed towards a vote, some members again raised the concern that both public and federal members hadn’t had a chance to read the comments themselves, and could only get AI summaries. Dr. Robertson noted, as someone with PhD in information science, that AI has major limitations—he was concerned that AI use is being used as a replacement for reading the actual comments.

Dr. Fogel has interrupted Dr. Robertson and said that the plan “responds to two decades of public comments” (just not, you know, the ones actually commenting on the Plan) and “this Committee is focused on urgency and action.” Fogel claimed, “we considered public comments more than ever in the history of this committee.” Unclear how that’s possible—I was on this committee during its history, and we actually read the comments.

And then another public member, Honey Rinicella, jumped in to tell Scott Robertson that he should think about “who you’re speaking to” because she’s a longstanding advocate and knows many commenters personally.

I was astounded by the unprofessionalism. “Do you know who I am?” is not an adequate answer to concerns that federal members didn’t actually have the chance to read public comments. This deprives the community of a voice on a document concerning MILLIONS in research funds.

And while I am sure she does know many commenters personally, her apparent position that she already knew what was in those comments is the kind of thing you could only truly think if you hadn’t read the comments.

The Urgency Argument

Once again, the Chair shot down concerns that the members hadn’t had a chance to read the comments. She argued that the Plan isn’t actually binding on NIH, so it didn’t have to actually address all concerns—that it’s just a “starting point” for the NIH’s budget estimate. She also argued that by law, NIH has to draft a budget estimate “pursuant to” the Strategic Plan, so it couldn’t create an estimate until the Plan had passed.

It’s odd that they’re talking about how important it is to pass a plan just so NIH can prepare a budget estimate—if that were the goal, they could have slapped together a short plan making some high-level budget recommendations—not 330+ pages with tons of recommendations for completely new programs, a complete structural overhaul, etc.

Also if drafting a Strategic Plan were so urgent, why didn’t they start discussions on it in their first meeting in April, instead voting on a bunch of unrelated recommendations to various agencies?

The whole purpose of the planning process is to get real input from the committee members and the public – not to just force through something that seems to have been drafted with no transparency.

Urgency is not a good reason to pass a Strategic Plan that has the potential to do active harm by failing to make concrete, budget-level recommendations for funding of basically anything other than biomed—again, these could be important things to study but they aren’t the ONLY things.

Finally, the argument that the Plan is not binding on the NIH seemed inconsistent with other comments during the meeting saying the Plan would fix government inaction. Members noted that past Strategic Plans have identified areas of need, but they haven’t really been acted on—which is very true. But exactly how will this Strategic Plan fix that problem without the full buy-in and participation of the relevant federal agencies, which (as noted below) they simply haven’t achieved? How will it fix that problem if it fails to ensure that there’s actually money in the federal budget for these recommendations?

Addressing Transparency Concerns

Another thing the public had expressed concern about was how the draft Strategic Plan was created in the first place. Generally, this is something drafted only after one or more public meetings, and consideration of public input. Dr. Fogel claimed that the Plan was developed by working groups across seven meetings – but the proceedings of those working groups are still not visible to public, and only three meeting summaries were released.

Dr. Fogel also tangentially complained that a previous Strategic Plan update (approved when I was on the IACC) still hasn’t been released to the public—I suppose as a way to claim that previous iterations of the Committee also weren’t transparent. But that draft was released to the public, and commented on extensively, before the vote. It’s still up on the IACC website for the 2024 Strategic Plan meeting. It was approved with pretty minimal revisions in late 2024. The final version with those revisions wasn’t released—but it’s unclear who she thinks is holding it up?

I am not on the Committee anymore and haven’t been since January 2025. We aren’t holding the pen. We don’t have the file. The file is on the computers of someone within the Department of Health and Human Services. If she wants to complain about transparency she can pick up the phone, call Secretary Kennedy, and have him tell HHS to release the Strategic Plan update.

(The holdup is almost certainly that that document had a lot of recommendations about equity and gender identity and someone in HHS doesn’t like the idea of releasing anything official that talks about that!)

Money, Money, Money

You may have noticed me going on about funding. Well, so did some of the federal members of the Committee, with limited success.

The main issue: the Strategic Plan doesn’t attach funding to a lot of its projects. It also adds a bunch of specific dollar targets for biomedical research, without attaching dollar targets for non-biomedical research.

In previous Strategic Plans, the IACC also proposed doubling the budget—but they didn’t lock the NIH into specific funding targets for some topics but not others.

During the deliberation, the public members of the Committee repeatedly failed to appreciate why this is a problem, such as when they insisted that the Strategic Plan wasn’t deprioritizing “basic science,” like genetics and neurology. But they don’t attach a dollar target to this, but they do attach dollar targets to other biomedical research.

That wouldn’t be so much of a problem if they actually got the $633+ million appropriation for NIH they recommend – but if Congress instead decides to keep funding the same? The $270m of biomedical research that has dollar targets attached may get funded, while everything else has to compete over what’s left. That’s why people are concerned it’s deprioritizing everything else.

When Dr. Robertson noted this issue with the budget targets being way above existing levels (with no contingency plan), Dr. Fogel responded that she thinks the Strategic Plan will “energize” the community enough to get Congress to double its appropriations for autism research, and she was personally willing to lobby Congress.

I have worked in disability policy for 13 years… “the community will be so energized by our 330-page plan that Congress will double our budget” is very much not how this works. You need to actually grapple with the possibility that not everything you want will get funding.

This is also an issue with a lot of initiatives that could be really helpful (like a site that helps people navigate autism services). Almost all those mandates are currently unfunded—needing new appropriations or diverting funding from elsewhere. For example, Department of Labor gets assigned a bunch of projects in this Plan, but it doesn’t get any Autism CARES funding, so unsure how they’ll pay for these projects.

Seriously… do you know how impossible it is to get any of these federal agencies to do anything that doesn’t come with a specific budget line that can only be used to do that specific thing? Extremely impossible.

Why they needed to include so many unfunded mandates into what Fogel recognizes as the basis for a budget estimate is unclear. It’s not like they couldn’t propose those initiatives outside the Strategic Plan—they proposed several new initiatives in standalone recommendations in April, and spent a bit of time in the morning taking credit for subsequent HHS projects (like National Autism Missing Person Initiative).

Funding. funding. FUNDING. Fund. Ing. Funds. Money allocated for a task. Tasks that are paid for with money. All government tasks cost money to do. The money that pays the employees that do the thing. Expenses. Congressional appropriation/approval -> Treasury -> Agencies -> Staff -> Deliverable.

In government, proposals for initiatives that don’t come with a budget generally go in the suggestion bin (a.k.a. the trash).

And yes there are some exceptions—mainly for the pet projects of people at top levels of government. The money typically gets pulled from somewhere else.

Federal Members Complain They Weren’t Consulted

A few other federal members raised some other concerns. The member representing the Social Security Administration complained they had been given partial responsibilities for an initiative on “HCBS, Medicaid, Transition, and Caregiver-Succession Alignment,” and they simply don’t have involvement in housing planning. They asked to be removed from that assignment.

The member representing the Food and Drug Administration also weighed in on this, noting that it would have been really nice for the drafters of the Strategic Plan to talk to the federal members of IACC before writing this draft to see what they are already doing, and what they can and can’t do.

Dr. Fogel’s response was to say that those federal members had a chance to raise these issues in the Working Groups—but based on what I saw in the meeting summaries, I can’t see where these issues were even proposed—there’s no indication they had this draft in front of them or that they had any discussion of those projects. How were they supposed to raise those concerns, then?

Dr. Fogel also reiterated that the Strategic Plan isn’t binding and is “just a starting point.” She’s right that IACC is just a bunch of recommendations—but again, why not get the recommendations right? I’ve always tried very hard not to make recommendations for federal agency action that I am not sure are good or possible things to do. Again, speaking solely for myself personally, I don’t understand this attitude at all.

The Vote

As they did at the last meeting in April, all votes happened via zoom poll, rather than verbally—this means public can’t know who voted how. A records request asking for those records from last meeting went unanswered.

Prior to the vote, Dr. Fogel again urged the public not to stress so much about the actual contents of the Strategic Plan: “for the listening public I will stress… nothing we do here today is binding, nothing we do here today is implementation stage.”

But then also said that this vote will ensure that the “years of public comment” they’ve received will actually be acted on.

I don’t think those can both be true.

Ultimately, several federal agencies abstained from the vote. This is notable and something that would never have happened in previous meetings. You simply wouldn’t move something to a vote without broad consensus from the federal agencies tasked with actually implementing the plan.

At the end, the IACC voted to approve the plan, subject to some minor edits. Those will then be incorporated into the final which will then be recirculated.

Whatever Happened to Collegiality?

As a final note, I want to say, this is not the IACC I know. Until now, IACC was a diverse body, with people from all over the community with a wide range of perspectives. I served collaboratively alongside people I fundamentally disagreed with.

We did not turn the meetings into Mean Girls parodies. We did not tell people to “watch who you’re talking to.”

The Chair was the Director of the National Institutes of Mental Health, a seasoned career federal employee who facilitated the meeting, instead of bullying people into accepting a plan despite real concerns.

We got copies of public comments way in advance.

The current issues seem to be a microcosm of how a lot of government seems to be working now—with career professionals berated into going along with an agenda that is obviously unworkable in important ways. You can see it here, with many agencies abstaining from the vote instead of voting “no.”

I can understand that people want to act fast. The previous terms of the IACC often DID suffer from pretty serious delays, overdue plans, etc. But you can improve the pace of government without bullying behavior and disregard of consensus.

Comments should be sent to members with adequate time to be read, digested, and turned into revisions. There should be adequate time to get feedback from federal members.

The Strategic Plan should reflect what the members can actually agree should happen—not be forced because it’s “nonbinding.”

What I think is really amazing is how really different organizations came together to express concern about tbe process issues here. Autistic Self Advocacy Network, Autism Speaks, Profound Autism Alliance, Autistic People of Color Fund, Autistic Women and Nonbinary Network, AAPD, Autism Science Foundation and others.

Some of these orgs differ so strongly that they won’t work together on almost anything else. But all agree that the IACC should operate with transparency, civility, and meaningful opportunities for the public to be heard.

A big part of what has happened here is likely that the Chair, for the first time, is not a federal employee and has no government experience. She’s highly educated and familiar with autism research (albeit clearly ideological), but she just doesn’t seem to value career federal members’ input, or know how to work with them.

Additionally, unlike previous IACC rosters, the public members are not ideologically diverse and don’t represent large swaths of the advocacy world. This means no real cross-community collaboration.

I don’t know what the future is of IACC. I hope that in time, the public members of the Committee will realize they have to actually work with the public and with the federal agencies. Otherwise, their ambitious agenda—much of which I think is good!—simply won’t get done.

With thanks to Brian Des Roches for his editorial assistance.