August 20, 2026 -- The 2026 IACC Strategic Plan (hereafter, ‘plan’) makes some commendable recommendations. It comprehensively addresses infrastructure needs, scientific research, therapeutics and services.  We welcome the attention paid to the heterogeneity of the autistic population and plans for research and services to span the lifespan and full spectrum, including profound autism. We also applaud the calls for expanding the workforce and funding across sectors of the government that support education and healthcare services, especially in light of the draconian cuts that the current administration has made over the past year, which will need to be reversed if the plan is to move forward.

 

As the IACC develops the final plan, the following clarifications and scientific concerns should be addressed to guide the implementation of this highly ambitious and costly range of activities.

 

Clarifications:

• How does the 2026 plan connect with the 2024 IACC update to the 2021-23 strategic plan? The focus on heterogeneity and co-occurring conditions overlaps considerably; however, this lack of continuity and connection with earlier presentations of the same topics counters the standard approach in science, which is, at its heart, a cumulative endeavor. 

• How will the 3 new federal systems that are recommended in the plan, NAPTI, autism.gov, and the National Developmental Regression Initiative, be integrated with ONAC, which is currently responsible for coordinating all autism-related activities for the federal government?  Setting up these new systems will take considerable time and resources. How will the specific plans be initiated before these new systems are in place?  The administrative costs associated with these new systems should be clearly articulated and the plan should make funding recommendations related to them.

• The plan proposes many initiatives that cover almost every area of scientific investigation, treatments, services, and supports across the lifespan.  Not every initiative can be comprehensively addressed within the timespan of the plan.  The plan should set clear priorities and timelines, which will be important for pragmatic reasons and to inform the autism community.

• The plan should make clear whether the budget figures for different agencies, including NIH, that are presented in the plan are expected to fund both current commitments and the new initiatives or just the new initiatives. If these funds are just for new initiatives, the plan must request additional appropriations from Congress.

• The inclusion of deliverables associated with each initiative is a welcome and important component of the plan.  The deliverables should be connected to specific milestones and timetables for each initiative, which will allow the IACC and the public to track progress.

• The plan should be made available in prose that is accessible to the broader autism community.

 

Scientific Concerns:

• The plan does not integrate proposed new research studies in all areas with the existing scientific literature on autism.  The text is not linked to the bibliography in a standard format making it challenging to understand the background on which many of the proposed studies are built.  Moreover, the background studies that are cited are often one-sided and the plan fails to provide a critical analysis of the current science.

• While the important influence of genetics on autism is acknowledged, the proposed new research coordinated under NAPTI across all the domains does not include integrating participants’ phenotypic and genomic data.  The same is true for the studies proposed under the National Developmental Regression Initiative.  This represents a missed opportunity to learn how genomics influences the heterogeneity of phenotypes in each domain, diverse developmental trajectories, as well as potential interactions with novel therapeutics that will be evaluated.

• The plan covers a wide range of domains in the precision therapeutics initiative.  Some are well-documented across multiple replicable studies, e.g., sleep, epilepsy.  Others have not received the same level of evidence to support inclusion at the level that is proposed, e.g., folate metabolism.  The research plans proposed for each domain should reflect the current state of evidence – in some cases it is premature to propose therapeutic trials for domains that have yet to receive substantial support from research investigations.

• The focus on profound autism is important; however the plan does not follow the definition that has been decided on by the scientific community (Siegel et al., Molecular Autism 2026).  The focus on the communication needs of people with profound autism is laudable.  However, attributing their difficulties to ‘whole body apraxia’ and related motor impairment ignores current research findings on other contributing factors including intellectual disability and auditory processing impairments that impact both receptive and expressive language.  While a small number of minimally/non-speaking autistic individuals may benefit from text-based communication, most will not.  It is concerning that the most significant challenges faced by profoundly autistic individuals, including aggressive outbursts and self-injury, are not addressed in the plan.

• Many areas of the plan call for developing biomarkers and outcome measures.  More attention should be given to the kinds of measures that will best serve the field.  Developing reliable, valid and objective measures in all areas that are required to implement the precision therapeutic agenda takes considerable time – it is unrealistic to plan for clinical trials that will depend on measurement development in the timespan proposed.

• A wide array of service recommendations is proposed.  There are uneven degrees of evidence in support of these.  The plan should clarify which are ready for implementation based on current evidence (e.g., some mental health services) and which should be assigned for further investigation before being considered (e.g., text/letter-based assisted communication).

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One final note: NIH has committed a considerable portion of its reserve budget to support the Autism Data Science Initiative.  We recommend that as the draft plan undergoes revision, many of the innovative approaches that are incorporated into the design of the funded ADSI projects be added into the implementation plan.  These include requiring community engagement at all stages of a research program, systems to provide independent validation and replication, open science frameworks and a commitment to provide ongoing updates on progress and findings to the public.  In this way, the IACC has the opportunity to begin to rebuild trust in the research proposed that will benefit the wider autism community.