On August 27th, members of the federal Interagency Autism Coordinating Committee (IACC) voted to adopt a working draft Strategic Plan built to do something no prior plan has fully done: make it possible to actually track what the federal government does for our community, and whether it makes a measurable difference in the lives of people impacted by autism.
The final vote was 26 yes, 1 no, and 13 abstained. I want to sit with that number for a moment, because it tells you almost everything you need to know about the day.
The Room Was Heated, and It Should Have Been
This was not a quiet procedural meeting. It was a real, sometimes tense debate between public members and several federal members, playing out in real time in front of families who have waited decades for this level of federal attention.
Before the vote, the Committee reviewed public comments on the working draft. This round brought in more than 5,000 comments, a higher combined total than the past decade of IACC public comment periods put together. The overwhelming majority were in favor of the 2026-2028 Strategic Plan. Vaccines and vaccine injury were the second most common subject raised across those thousands of comments.
One Father’s Story Hit Home
One of the most compelling comments for me came from Mike Jakubowski, an autism father and former board member of Autism Health.
Mike spoke about something countless parents understand: receiving an autism diagnosis and then essentially being left to navigate an incredibly complicated system on your own.
He described physicians who had few answers, families being told their child’s autism was genetic, and the struggle to obtain appropriate medical care and services. He also called for centralized places where families could access knowledgeable providers, better information, and real support.
This is precisely why this Strategic Plan matters.
A diagnosis cannot be the end of the medical investigation.
Families deserve physicians who understand autism and its co-occurring conditions. They deserve navigation. They deserve services. And when a child experiences regression or develops serious medical problems, parents deserve more than, “That’s just autism.”
Vaccines and Regression Could No Longer Be Ignored
We also heard from Dr. Brian Hooker and Steve Kirsch, who urged IACC to give greater attention to vaccines in autism research.
Dr. Hooker’s submitted statement strongly supported the Plan’s focus on regression, profound autism, mitochondrial and metabolic function, gastrointestinal biology, environmental factors, and other areas, while arguing that vaccine exposures should be explicitly investigated within the environmental research agenda.
Steve Kirsch presented preliminary survey findings that he believes warrant independent replication and asked IACC to make such replication a priority. Those findings should be understood as claims presented in public comment, not established conclusions. That is precisely why independent, rigorous research matters.
For me, the larger principle is simple:
No scientifically plausible question should be considered too politically uncomfortable to investigate rigorously.
Response to Dr. Halladay
One of the written comments came from Dr. Alycia Halladay of the Autism Science Foundation, a twelve-page submission. I felt it was important to respond directly, in part because Dr. Paul Offit, a founding board member of that organization, has deep ties to pharmaceutical industry funding and is one of the founding board members. Here is what I said:
“I want to respond to Dr. Halladay’s comments because I believe it illustrates exactly why this Strategic Plan is necessary.
I do not dispute that genetics plays an important role in autism for some individuals. But Dr. Halladay states that a specific genetic variant can be identified as the primary cause in approximately 20% of autistic individuals. My question is: what about everyone else?
For decades, federal autism research has heavily prioritized genetics, with genetics and genomics accounting for approximately 38.5% of NIH autism research funding, while environmental factors received only about 5.8%. That is sad.
And I want to add something from my experience working directly with families: the parents I speak with who have pursued extensive genetic testing for their children overwhelmingly tell me that testing has provided no genetic explanation for their child’s autism. Their experiences matter, and they reinforce why we must investigate beyond genetics.
But this Plan is not anti-genetics. It recognizes that autism is heterogeneous and that genetic susceptibility may interact with immune, metabolic, mitochondrial, gastrointestinal, environmental, neurological, and developmental factors.
Families repeatedly report children who develop normally and then experience significant regression, losing language, motor abilities, cognition, and other previously acquired functions and we have a responsibility to investigate why.
We are not replacing genetics with another single theory of autism.
We are replacing genetic primacy with broader scientific inquiry.”
I am tired of genetics being treated as though it provides the answer for what happened to our children. For so many families, including mine, it does not. It is time for the federal research agenda to broaden its focus and seriously investigate the other biological and environmental factors that may be contributing to autism.
When Funding Became the Excuse
Toward the end of the meeting, several federal members raised concerns about funding as a reason for caution. That is the moment I lost my patience, and I said so:
“Due to the lack of research for vaccines, and the fact that a double-blinded placebo study has never been done on a single vaccine, my son (and many other children) suffered from a vaccine injury and regressed into a state of autism. My husband and I have spent hundreds of thousands of dollars on his care. That should not be the responsibility of the parents. The federal government caused this and the federal government should pay for their mistakes. Not the parents.”
I want to be clear about why I said what I said. This is my position, born from what my family has lived through, and it is why I advocate as hard as I do for informed consent and medical freedom. Every family deserves the right to ask hard questions about what goes into their child’s body, and to get real answers instead of silence.
And then there is the money. Federal investment in Alzheimer’s and dementia research through the NIH stands at approximately $3.9 billion a year. Total federal spending and research allocations for autism across agencies like NIH and CDC has historically ranged between $390 million and $760 million annually. Autism is, according to the CDC, the fastest growing disability in this country. That gap is unacceptable, and I will keep saying so until it changes.
Thirteen Abstained
In the end, the Committee moved the Plan forward, with the exception of 1 no and 13 members who abstained from voting entirely. Most likely, these are the same 13 federal members who abstained at the last meeting in April. That consistency is disappointing. When you have the opportunity to stand behind a plan built to finally hold this system accountable, and you choose to stand behind nothing at all, that is its own kind of statement.
What Happens Next
After the August 27 vote, the next steps are essentially:
IACC adoption → finalization/publication → HHS and federal agencies → President AND Congress → agency implementation and appropriations/budget processes.
Secretary Kennedy is important, but he is not simply an approval gate that the Plan must clear before it can go to the President and then Congress. The statute says IACC makes recommendations to the Secretary and separately submits its Strategic Plan update to Congress and the President.
There is also an important second track involving money. Under the Autism CARES Act of 2024, for fiscal years 2026 through 2029, the NIH Director must prepare an annual autism budget estimate based on the IACC Strategic Plan and submit that estimate directly to the President for review and transmittal to Congress, after the Secretary and IACC have an opportunity to comment.
Ultimately, IACC’s recommendations are advisory. The Plan can influence what HHS, NIH, CDC, FDA, HRSA, CMS and other agencies prioritize, but IACC itself cannot appropriate money or compel agencies to implement every recommendation. Congress retains its legislative and appropriations powers, while executive agencies act within their statutory authorities and available funding. The law also directs the federal autism coordinating official to implement federal autism activities while taking the IACC Strategic Plan into account.
This Is Only the Beginning
I don’t expect every member of IACC to agree with me… only in a perfect world.
I don’t expect every researcher, federal agency, autism organization, clinician, or advocate to agree on what causes autism or which research questions deserve the greatest investment.
But I believe we should agree on one fundamental principle:
We cannot be afraid to ask questions.
We should study genetics.
We should study environmental influences.
We should study regression.
We should study immune and inflammatory pathways, mitochondrial and metabolic dysfunction, gastrointestinal conditions, epilepsy, communication, and motor planning.
We should rigorously investigate questions surrounding vaccines and other exposures rather than deciding that any subject is beyond scientific examination.
And at the same time, we must address the immediate realities of people living with autism: medical care, communication, safety, education, employment, housing, transportation, respite, caregiver support, and aging.
That is what makes this Strategic Plan different.
It doesn’t have to provide every answer today.
It needs to create a federal system willing to look for the answers and be accountable for what happens next.
Yesterday was contentious. It was emotional. At times, it was frustrating.
But ultimately, it was a great day.
The 2026–2028 IACC Strategic Plan is moving forward. And so are we.
In Gratitude,
Tracy Slepcevic
Founder of Autism Health and the Autism Health Summit
Board Certified Integrative Health Practitioner
Bestselling Author of Warrior Mom: A Mother’s Journey In Healing Her Son with Autism Member of the Interagency Autism Coordinating Committee (IACC)
www.AutismHealth.com | www.WarriorMom.com | www.AHSconference.com
The views expressed here are my own and reflect my personal advocacy for informed consent and medical freedom. They do not constitute medical advice.
Even if autism can be tied to genes, it is quite possible, if not probable, that those genes are triggered by environment. It has been shown that there is a strong genetic component of alcoholism. But if someone who has that gene never drinks alcohol then they will never become an alcoholic. No one has said how this autism gene might work. It could be that such a gene makes it harder for a child to handle the adjuvant (toxin) in a vaccine. Thus making such a child more susceptible to central nervous system damage….
Thanks for that update, Tracy! I like many others left a comment of support and it helped. Warriors like yourselves are our every day heroes. As exhausting as this process is, I just know we will prevail.