Autism Science Foundation Public Comment on the Draft 2026 IACC Strategic Plan for Autism Research

August 20, 2026 — The Autism Science Foundation (ASF) appreciates the opportunity to provide comments on the draft Strategic Plan for Autism Research released by the Interagency Autism Coordinating Committee (IACC) on July 20, 2026. The Strategic Plan will shape the federal autism research agenda for years to come. We therefore believe it should reflect the strongest available scientific evidence, identify the highest-priority research questions, and provide a clear roadmap for advancing knowledge that improves the lives of autistic people and their families.

While there are several important areas in which ASF agrees with the draft, we are deeply concerned that the document departs from the current scientific consensus regarding autism biology and, as a result, risks redirecting scarce federal research resources away from the most promising avenues of discovery. On the whole, the plan directs limited federal research dollars toward scientifically questionable priorities at a time when advances in autism science have created unprecedented opportunities for meaningful progress. These concerns have only been heightened by the Executive Order signed by the President on August 11, 2026. 

The Strategic Plan Should Reflect the Current Scientific Consensus: Over the past decade, research has produced extraordinary advances in our understanding of the biology of autism. Hundreds of genes have now been associated with autism, and in approximately 20 percent of autistic individuals a specific genetic variant can be identified as the primary cause of their condition. Advances in neuroscience have demonstrated that differences in brain development are present during prenatal life, well before the behavioral features of autism even emerge. The overwhelming evidence for genetic architecture makes genetics the most promising routes to understanding biological subtypes and developing precision treatments. 

These discoveries have fundamentally changed the field. They have transformed autism from a condition understood primarily through behavior into a neurodevelopmental disorder whose biological mechanisms can increasingly be identified, studied, and ultimately treated. Genetic medicines (including antisense oligonucleotides (ASOs), small molecules and CRISPR editing)  are being developed to treat many of the monogenic forms of autism. In Angelman syndrome, a monogenic form of autism, ASOs are being used to reactivate the normally silent paternal copy of UBE3A in neurons, offering a potential way to address the underlying genetic cause rather than simply treating symptoms. Early preclinical studies have shown that ASOs can un-silence paternal UBE3A and improve Angelman-related phenotypes in animal models, while newer approaches are moving toward testing this strategy in people. Similar trials of ASOs in human SCN2A patients have resulted in dramatic seizure reduction. These advances are especially significant because they demonstrate the potential of gene-targeted therapies to restore a missing protein in the brain, providing a model for precision treatments for other single-gene forms of autism. This research is also revealing how loss and restoration of genes affects neural circuitry, synaptic function and brain networks, potentially identifying downstream mechanisms that are also disrupted in idiopathic autism. 

Scientists have also moved beyond identifying genes to showing us what those genes are actually doing inside the cell. By mapping the protein interactions affected by autism-associated mutations, researchers have begun to identify the molecular machinery that is disrupted and where there are opportunities to intervene. Studies show that different autism-related genetic mutations converge on the same molecular pathways and protein complexes. This could fundamentally change how we think about developing treatments; rather than needing to develop an entirely different therapy for every individual gene or mutation, we may be able to identify shared biological targets and develop treatments that could benefit groups of people with different genetic forms of autism, and eventually people with idiopathic autism. 

Surprisingly, the draft Strategic Plan gives comparatively little emphasis to these tremendous scientific advances. Instead the document deemphasizes genetics, neurodevelopment, and brain biology in favor of a broad injury model that is not consistent with the direction of contemporary autism science. Federal strategic plans should be grounded in established scientific evidence. Redirecting limited federal research investments away from the strongest biological evidence will slow scientific progress precisely when unprecedented opportunities for therapeutic development are emerging.

The Plan Places Too Little Emphasis on Precision Medicine: ASF was encouraged to see the proposal for a Precision Therapeutics Institute. However, the document uses the term “precision” primarily to describe stratifying individuals into clinical subgroups and matching interventions to observable characteristics.This differs substantially from the way precision medicine is currently understood throughout biomedical research. ‘Precision medicine” increasingly refers to identifying the molecular causes of disease and developing targeted therapies, including genetic medicines, for well-defined patient populations. Autism research is entering exactly this era. Gene replacement, antisense oligonucleotides, gene editing, and other molecular therapies are already advancing in multiple genetically-defined neurodevelopmental disorders, with several autism-associated syndromes among the leading candidates.

The Strategic Plan should explicitly recognize these scientific developments and prioritize research that will accelerate the translation of genetic discoveries into effective therapies.

The Plan Emphasizes Infrastructure More Than Scientific Priorities: Previous IACC Strategic Plans identified specific scientific questions and research objectives that helped guide investigators and funding agencies. By contrast, much of the current draft focuses on creating new federal infrastructure, including coordinating bodies, dashboards, accountability systems, data portals, and expanded federal management activities. While improved coordination has value, infrastructure should support science, not become the primary focus of a scientific strategic plan. Moreover, the plan’s call for expanded federal coordination and management is difficult to reconcile with the Administration’s simultaneous efforts to reduce federal agency staffing and cut Medicaid and other programs that provide essential services and supports to people with autism and other disabilities. 

The document would be substantially strengthened by identifying the highest-priority scientific studies needed over the next five years and providing greater specificity regarding the research questions federal agencies should pursue.

Specific Scientific Priorities Are Missing: The draft contains many broad aspirations but relatively few concrete research recommendations. A strategic research plan should identify the key scientific questions whose answers would meaningfully advance the field. For example, it should prioritize:

• identifying additional genetic and molecular causes of autism, as well as their interaction with environmental factors
• understanding biological mechanisms that link genetic variation to neurodevelopment;
• developing biomarkers that improve diagnosis and clinical trial readiness;
• accelerating development of targeted therapeutics;
• improving outcome measures for clinical trials;
• expanding natural history studies for genetically-defined forms of autism; and
• strengthening translational research that moves discoveries from laboratory science into clinical care.

Without this level of specificity, it is difficult for investigators, funding agencies, and the public to evaluate whether meaningful scientific progress is being achieved.

Scientific Progress Requires Sustained Investment: Although not in the plan itself, the current IACC chair has written on social media that families in the autism community must ask themselves what the prior strategic plans have actually changed for them. But scientific progress in complex disorders rarely occurs quickly. Cancer research, Alzheimer’s research, and many other biomedical fields have required decades of sustained investment before transformative therapies emerged. Autism research is now entering an exceptionally promising period. The remarkable advances in genetics, protein-protein interactions, developmental neuroscience, stem cell biology, organoid and assembloid development, artificial intelligence, and precision therapeutics provide opportunities that did not exist even two years ago.This is not the time to redirect the field away from its strongest scientific foundations. Rather, it is the time to accelerate the research pathways that are already producing meaningful discoveries.

Unsubstantiated access to information: Page 29 “Future Considerations for Effective IACC Work” states that the IACC should have access to primary datasets, budgets, rejected grant applications, agency comments, and other information considered confidential.  Little justification is given for unprecedented access to this data and the IACC should reconsider whether it truly needs this information and if so, for what purpose. We fear this would discourage families from participating in scientific research. 

Lack of citations. Throughout the document, the plan lacks citations. For example, the plan states that 40% of children experience regression (page 56). First, that number is outdated.  Second, the citation for this statement is missing from the references section. Unfortunately, this is the case for most of the scientific statements in the document. A list of references is included at the end of the document but none of the references are attributed to any particular claim. Because of this, it is impossible to know which of the claims are justified with data and which are not.

FACA Process Disregarded: This plan was presented after a single public meeting of the IACC, during which writing a plan was never mentioned. There were no public meetings held between the one public IACC meeting and the release of this document. We believe writing the plan behind closed doors is a violation of the Federal Advisory Committee Act (FACA), to which the IACC is subject. In contrast, the strategic plan produced by the IACC in 2024 resulted from over 21 publicly noticed meetings of the full committee and section working groups, which provided many opportunities for the public to provide feedback and comment throughout the drafting process.

Areas of Agreement

Although ASF has significant concerns about the overall direction of the draft, we support several important elements.

Recognition of profound autism and individuals with high support needs. The draft appropriately recognizes autistic individuals with profound autism, minimal speech, intellectual disability, complex medical conditions, and high support needs. ASF has long advocated for greater research attention to this historically underserved population and strongly supports its inclusion throughout the Strategic Plan. However, we are greatly troubled by the committee’s decision to exclude IQ as part of the Profound Autism paradigm. IQ captures cognitive impairment, which is distinct from language or adaptive functioning. A person may be minimally verbal with or without having severe intellectual disability, so language ability alone cannot identify profound cognitive impairment. IQ also allows researchers to identify profound autism in existing datasets. Many large autism studies include IQ scores but lack detailed measures of adaptive functioning or supervision needs, so eliminating IQ would make valuable existing data much harder to use. In addition, intellectual disability is associated with important differences in needs and outcomes. Autistic people with significant intellectual disability are more likely to have medical and psychiatric comorbidities, serious behavior challenges, lower adaptive functioning, and greater dependence on lifelong supports. Finally, problems with IQ testing do not mean cognitive ability should be excluded, but rather that better measurement tools should be developed. The recent Delphi panel that published a consensus research definition for profound autism recognized that conventional IQ tests can underestimate or inadequately measure IQ in some people with profound autism, but favored improving cognitive assessment rather than eliminating cognition from the definition.

Commitment to evidence-based practice. The draft appropriately emphasizes that interventions should progress through clearly defined stages of scientific validation before being adopted into clinical practice. ASF has consistently advocated that autism interventions should be guided by rigorous evidence rather than anecdote or enthusiasm.

Communication research. ASF supports the expanded emphasis on communication research for nonverbal and minimally verbal autistic individuals, including the exploration of innovative technologies such as AI-assisted communication. However, we do not agree that treatments for which there is no evidence should be supported, as the plan suggests on page 203 (“Federally funded or public programs should support continued access to communication methods when individualized, experience-based evidence suggests the method is effective for them, including while broader research is underway”). 

Co-occurring medical conditions. Greater attention to epilepsy, sleep disorders, gastrointestinal conditions, and other co-occurring medical conditions represents an important priority that aligns closely with ASF’s long standing research agenda.

Translation into clinical practice. We agree that scientific discoveries should move more efficiently into clinical care. Although we believe the draft places too much emphasis on federal infrastructure, we agree with the call to improve clinical trial readiness and accelerate translation.

Understanding when, if and how children lose skills. Parents report that children with autism lose skills at all ages, including during toddlerhood, and through adolescence into adulthood. This is devastating for parents and has been frustrating for clinicians to explain, as the nature of these episodes is still not well understood. The prevalence of regression is known to vary widely across age and be dependent on how early development was monitored. We support prospective longitudinal studies that follow children, teens and adults prior to, during, and after periods of loss of skills to understand the nature of what skills are lost, when, and to clarify biological and/or neurological changes that may be happening at critical times of development. 

The plan puts considerable emphasis on finding the medical causes of regression (immune, metabolic, mitochondrial, infectious, GI) but does not give comparable prominence to regression as a manifestation of the underlying neurodevelopmental biology of autism itself. 

Conclusion

The Autism Science Foundation shares the IACC’s commitment to improving the lives of autistic people and their families. We also recognize the enormous responsibility involved in developing a national autism research strategy. For that reason, the Strategic Plan must be firmly grounded in the best available scientific evidence. The extraordinary advances in genetics, developmental neuroscience, and precision medicine over the past decade have created unprecedented opportunities to understand autism biology and develop effective treatments. Those opportunities should be the central focus of the nation’s autism research agenda. They are missing from this plan.

We respectfully urge the IACC to revise the Strategic Plan so that it more accurately reflects the current scientific consensus, articulates specific research priorities, and places greater emphasis on the biological discoveries and translational science that offer the greatest promise for improving outcomes across the autism spectrum.