NCSA Public Comment on the Draft IACC Strategic Plan 2026–2028
Public Comment | August 20, 2026
To: Interagency Autism Coordinating Committee (IACC), National Institute of Mental Health (NIMH)
Attention: Sylvia Fogel, MD, Chair
Electronically Submitted to: IACCPublicInquiries@mail.nih.gov
Deadline: August 20, 2026, 5:00 p.m. ET
The National Council on Severe Autism (NCSA) advocates for individuals affected by severe forms of autism and related disorders, a population requiring continuous or near-continuous supervision and lifelong care. We appreciate the opportunity to comment on the IACC Strategic Plan 2026-2028. We support much of what the plan sets out to do for them, and we raise three concerns: the rejection of scientific consensus, the process and transparency of the current cycle of IACC, and its uneven application of its standard of evidence. Throughout, page numbers in parentheses refer to the Draft IACC Strategic Plan 2026-2028; peer-reviewed sources are cited by author and year and listed in the References.
Endorsements
NCSA has urged IACC before to keep the realities of severe autism in federal language (National Council on Severe Autism, 2022), and we begin with what this plan gets right. It treats autism's true prevalence as "a federal research priority because the answer determines the future demand on health, education, and long-term support systems" (20), and makes evidence discipline a governing principle, warning against "treating early findings as ready for wide adoption, which commits resources ahead of the evidence" (20); and it prioritizes "stabilization, respite, navigation, and family support" (24). It declines to force the highest need population into one frame, "not solved by a single model" in housing (219) and not "a single workforce category" in employment (231); it acknowledges "caregiver capacity is a load-bearing assumption beneath the autism service system" (224); it recognizes "too many autistic adults remain attached to pediatric or developmental clinicians because adult systems have no clear destination prepared to receive them" (239); it judges transportation by "completed access to chosen destinations" (245). NCSA endorses these commitments. The strategic plan our community needs is one that defends the most vulnerable from exclusion, synthesizes the ongoing work across agencies, and galvanizes the research to advance systems that can support them well into the future. We raise the concerns that follow so that it can.
Recommendation 1: Restore intellectual disability as a qualifying pathway within the definition of profound autism, as both the Lancet Commission and the Delphi consensus retained it, and meet the difficulty of measuring cognition in this population by recommending that its measurement be advanced
Per its original authors, profound autism debuted "as an administrative term, not as a formal nosological diagnostic entity." The Lancet Commission built it on two established diagnostic constructs, intellectual disability (ID) and language impairment, the ICD's code 6A02.5, "autism spectrum disorder with disorder of intellectual development and with absence of functional language" (Lord et al., 2022). That mapping onto categories already in the diagnostic record lets this population be seen in disaggregated data. The term was developed to correct a documented failure: after the 2013 DSM-5 collapsed the pervasive developmental disorders into a single Autism Spectrum Disorder (ASD) graded by support need, the highest need population became near invisible in research. A review and meta-analysis of 2016 autism research found that while, at that time, estimates put ID at around 50% of the ASD population, of autistic participants in studies reviewed, "an estimated 6% had ID" and "only 2% of participants were non- or minimally verbal" (Russell et al., 2019). The Lancet Commission introduced profound autism in 2021 to return that population to research, defining it by two pathways, "a substantial intellectual disability (eg, an intelligence quotient below 50), very limited language..., or both" (Lord et al., 2022); the 2026 international Delphi consensus of 137 experts kept both, joining IQ<50 to minimal verbal ability with an "and/or" (Siegel et al., 2026). Both set the threshold at 50, not the broader 70, because the designation was meant for a stable population whose factors "are not likely to change" (Lord et al., 2022). The goal was stability, so their near extinction in research representation would not occur again.
IACC adopted its own definition of profound autism by vote on April 28, 2026 (Attachment C), and carried it through the draft, where the term appears more than 40 times. It states that "intellectual disability is neither required nor presumed" (177), which was always true: ID was never a requirement, but one of two qualifying pathways. Attachment C concedes this, noting prior frameworks used ID "as an alternative to, or in conjunction with, minimal or no speech," before recommending against "making intellectual disability a mandatory element of the designation." IACC argued against a mandate that never existed while removing the pathway that did. Its criteria no longer contain an ID pathway at all, and that can only subtract. In the CDC surveillance data IACC itself cites, children were "classified as having profound autism if they were nonverbal, were minimally verbal, or had an intelligence quotient <50"; 42.7% met that IQ<50 criterion alone (Hughes et al., 2023). A nonspeaking person without intellectual disability already has the communication qualifier as a pathway, so removing the IQ<50 pathway serves only to drop over 40% of people the scientific community had identified as fitting criteria, many of whom may presently be participants in longitudinal studies. The redefinition threatens current research and future advancements, disrupts federal surveillance data, and thrusts the most vulnerable back to the invisible margins of science.
IACC justified the removal on the ground that ID is hard to measure here, that "nonspeakers frequently show floor effects on standardized assessment, so language, communication competence, and cognition may be systematically underestimated" (200). That difficulty is real and closing it is exactly the kind of advance IACC exists to summarize and support (42 U.S.C. § 280i-2(b)). Technology advancements are already underway to address measurement challenges: the Neurobehavioral Evaluation Tool was validated to assess neurodevelopmental populations, including minimally verbal and severely impaired individuals conventional instruments miss (Frazier et al., 2025). NCSA urges IACC to support this kind of work. Faced with a gap its charge directs it to close, IACC expelled those hardest to assess instead. Genuine, stable ID does not dissolve under a better instrument; the remedy for an imperfect test is a better test.
In the pathway's place, IACC reasoned from "whole body apraxia," a term the plan itself concedes "is not a standardized clinical diagnosis," noting the literature uses "region-specific classifications" (157). Neither the Lancet Commission nor the Delphi consensus contains any motor or apraxia criterion. The intellectual disability qualifier it removed is a recognized diagnostic construct; "whole body apraxia" is not. A federal advisory committee should not trade a recognized construct for one its own text admits the diagnostic system does not carry.
ID is central to this population, to its size, cost, and risk. It co-occurs in 39.6% of autistic eight-year-olds (Shaw et al., 2025) and separates the estimated $2.4 million lifetime cost of supporting a person with autism and ID from the $1.4 million cost without it, in the study the plan cites (Buescher et al., 2014). It compounds risk: "lower expressive communication, lower cognitive functioning, and lower adaptive functioning are predictive of behavioral concerns and negative outcomes" (Bottini et al., 2026). Though challenging behavior can appear without it, aggression runs higher and more persistent with ID, 80% at school age and 58% in adulthood versus 48% and 22% (Gohari, Schiltz, & Lord, 2026). Those with ID also face elevated risk of preventable death from a recognized cluster of conditions, the "Fatal Five" (Escudé, 2024). NCSA's 2025 survey of 1,289 family caregivers found 63% faced a behavioral crisis, 79% had been turned away as "too severe," and only 12% had a plan for their child's care once they no longer can provide it (National Council on Severe Autism, 2025). The plan invokes the $2.4 million cost at page 37 to establish urgency yet deletes ID from the definition—excluding the very group that pathway identified—and turning from the risks that drive the greatest need. Without an ID pathway, the population the term was built to identify loses the anchor that lets it be counted and slips back into the undifferentiated autism population the designation exists to distinguish it from.
IACC's charge is to "monitor autism spectrum disorder research," "summarize advances," "make recommendations to the Secretary," and "develop a strategic plan for the conduct of, and support for, autism spectrum disorder research" (42 U.S.C. § 280i-2(b)). The plan states the same limit: "nothing in Part VI should be read as authorizing the Committee to direct, compel, or supervise the operations of other departments and agencies" (249), and directive verbs elsewhere "should be read as recommendations" (250). By its own account, IACC advises and recommends, and the problem is not merely that it voted to recommend the redefinition. In Attachment C, "Proposal to Adopt the Term 'Profound Autism' with Functional Criteria for Research and Policy," IACC took a term the scientific community has defined by consensus for five years and filled it with its own construction, stripped of the ID pathway, then used it as the plan's operative definition more than 40 times, describing the April action as the "adoption of a standardized functional designation of profound autism for research and policy purposes" (20).
A reader who meets "profound autism" in a federal plan reasonably takes it to mean what the field means; the plan means its own construction, adopted in rejection of scientific consensus. The plan even relies on the consensus it rejects. Its reference list includes research that uses the scientific consensus definition of profound autism (276, 312, 320, 327), including the CDC study that counted this population through the IQ<50 pathway (Hughes et al., 2023), yet the plan removes that pathway and adopts a definition of its own. It does not cite the 2026 consensus at all. Summarizing the science is IACC's task; overriding it is not.
Recommendation 2: Restore collaboration with the public through Requests for Information rather than a reactive public comment process that asks the public to respond to materials it was not provided opportunity to shape
Attachment C was one of four recommendations prepared as the materials for the April 28, 2026 meeting, the first meeting of a newly appointed IACC, and approved by vote that day. The recommendations appeared before IACC first convened, and the record shows no working group and no Request for Information (RFI) developed before them. IACC's own federal record describes a different norm: plans "produced through a collaborative effort" with working groups and public "webcasts, minutes, transcripts, and materials," and "all IACC meetings... open to the public" (General Services Administration, Federal Advisory Committee database, COM-000679). Every prior cycle opened with a RFI before anything was written and built its plan through documented working groups and recorded votes; this cycle inverted that order, releasing the readymade 336-page plan with an original public comment window of July 20 to 24, 2026, extended to August 20, 2026 after national autism organizations objected. IACC is charged 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)). Improving public participation is part of IACC's mandate; instead, public input was confined to reaction to finished documents this cycle.
Recommendation 3: Make available for the public record the deliberation process and authorship of the April 2026 materials and the Strategic Plan 2026-2028
The Federal Advisory Committee Act (FACA) establishes the baseline expectation that a federal advisory committee's deliberation is observable, requiring meetings "open to the public" and "detailed minutes... shall be kept," recording "matters discussed and conclusions reached" (5 U.S.C. § 1009). The plan's record does not reflect an observable deliberative process: it names no working group and no author, calling its makers only "the drafters" (28); it rests on a single meeting date, with documents that show no deliberative record; it uses the term profound autism more than 40 times yet cites the Lancet Commission that coined it nowhere in its body, leaving it orphaned in the bibliography; and it uses two citation systems at once. Given a recommendation that departs from the published scientific consensus, the removal of the intellectual-disability pathway, carried in a federal plan tied to more than a billion dollars in federal autism research (Autism CARES Act, 2024), NCSA requests disclosure of the drafting and deliberative process behind the April 2026 materials and the Strategic Plan 2026-2028. The current record is insufficient to explain who developed the proposal, what evidence was considered, and how the Committee arrived at it. The plan discloses that its central portfolio analysis was "an automated, rule-guided LLM pass" that was "reproducible only approximately, and not a careful human read" (260). NCSA does not object to automated classification as a method. It objects to an approximately reproducible analysis carrying substantial budgetary weight without disclosed human validation. If that classification supports the plan's conclusions about portfolio imbalance and future budget alignment, IACC should disclose what human validation, inter-rater reliability check, sensitivity analysis, or error audit was performed.
Recommendation 4: Hold the same evidence standard to all interventions
The plan makes evidence discipline a governing principle, warning against "committing resources ahead of the evidence" and requiring each recommendation to record its evidence stage (20), yet for communication methods it directs the opposite: "access should not be delayed or restricted to methods with completed randomized trials" (203). The plan calls communication access "a basic civil right" (25), and NCSA agrees without reservation, which is precisely why communication deserves the same rigor the plan applies everywhere else. Recent reviews of communication interventions for this population report "significant gaps in the literature, including the scarcity of studies with appropriate methodological rigour and the lack of standardised protocols," and a "critical need for evidence-based guidelines" (Resina et al., 2025). NCSA asks that every intervention meet the evidence standard the plan sets for all the others. NCSA further asks IACC to recommend to the Secretary that the significant gaps and critical need for evidence-based guidelines identified by researchers in the field be resolved through rigorous research.
Recommendation 5: Preserve the full range of vocational settings, including the specialized employment authorized under section 14(c), within its employment agenda
The plan's employment agenda recognizes "two connected tracks" and pledges to "preserve and strengthen supported employment for people with high support needs" (231, 232), yet it does not address the specialized employment authorized under section 14(c) of the Fair Labor Standards Act, the center-based and supported settings some adults with the most severe forms of autism rely on. NCSA supports the full range of vocational settings and asks that the plan name and protect this one within it (National Council on Severe Autism, 2018).
Closing
A federal plan that directs more than a billion dollars in federal autism research must ensure those with the highest needs are not pushed to the margins of invisibility. A research designation built by a published, transparent, and stable scientific consensus to correct documented research exclusion should not be rewritten through a process the record cannot account for. NCSA offers these recommendations as a partner in the same work and in support of the plan's success.
Respectfully submitted,
Jackie Kancir, Executive Director
National Council on Severe Autism
www.NCSAutism.org
info@ncsautism.org
References
Bottini, S., McMahon, M., Slocum, S. K., Cook, T., & Scheithauer, M. (2026). Intensive services for behavior reduction: Comparison of autistic individuals with and without moderate-to-profound intellectual disabilities. Research in Autism, 130, Article 202775. https://doi.org/10.1016/j.reia.2025.202775
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. https://doi.org/10.1001/jamapediatrics.2014.210
Escudé, C. (2024). Clinical Pearls in IDD Healthcare (2nd ed.). IntellectAbility.
Frazier, T. W., Busch, R. M., Klaas, P., Lachlan, K., Loth, E., Smith-Hicks, C., Sahin, M., Hardan, A. Y., & Uljarevic, M. (2025). Quantifying neurobehavioral profiles across neurodevelopmental genetic syndromes and idiopathic neurodevelopmental disorders. Developmental Medicine & Child Neurology, 67(5), 618–629. https://doi.org/10.1111/dmcn.16112
General Services Administration. (2026). Interagency Autism Coordinating Committee (Committee COM-000679). Federal Advisory Committee Act Database.
Gohari, D., Schiltz, H., & Lord, C. (2026). A longitudinal study of aggression in people with autism and other neurodevelopmental disabilities. Journal of Autism and Developmental Disorders, 56, 464–480. https://doi.org/10.1007/s10803-024-06559-0
Hughes, M. M., Shaw, K. A., DiRienzo, M., et al. (2023). The prevalence and characteristics of children with profound autism, 15 sites, United States, 2000–2016. Public Health Reports, 138(6), 971–980. https://doi.org/10.1177/00333549231163551
Interagency Autism Coordinating Committee. (2026). Draft IACC Strategic Plan 2026–2028 (Working draft, July 17) and Attachment C: Proposal to Adopt the Term 'Profound Autism' with Functional Criteria for Research and Policy (adopted April 28, 2026). U.S. DHHS.
Lord, C., Charman, T., Havdahl, A., et al. (2022). The Lancet Commission on the future of care and clinical research in autism. The Lancet, 399(10321), 271–334. https://doi.org/10.1016/S0140-6736(21)01541-5
National Council on Severe Autism. (2018). Position statement on vocational options. https://www.ncsautism.org/vocational-options
National Council on Severe Autism. (2022). NCSA letter to IACC: Stop sanitizing autism. https://www.ncsautism.org/blog//ncsa-letter-to-iacc-stop-sanitizing-autism
National Council on Severe Autism. (2025). 2025 NCSA Family Caregiver Survey. https://ncsautism.org/survey-results
Resina, P., Mezzatesta, M., Elias, N., Aparici, M., & Mairena, M. A. (2025). Identifying and describing best clinical practices for children and adolescents with complex communication needs: A scoping review of healthcare-based interventions. Journal of Intellectual Disability Research, 69, 1081–1096. https://doi.org/10.1111/jir.70022
Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research. Molecular Autism, 10, 9. https://doi.org/10.1186/s13229-019-0260-x
Shaw, K. A., et al. (2025). Prevalence and early identification of ASD, ADDM Network, 16 sites, 2022. MMWR Surveillance Summaries, 74(2). https://doi.org/10.15585/mmwr.ss7402a1
Siegel, M., Lord, C. L., Tager-Flusberg, H., Ursitti, J., Halladay, A., & Singer, A. T. (2026). Developing a consensus research definition for profound autism using a modified Delphi method. Molecular Autism, 17, 28. https://doi.org/10.1186/s13229-026-00727-y
Autism CARES Act of 2024, Pub. L. No. 118-180 (2024).
42 U.S.C. § 280i-2 (Interagency Autism Coordinating Committee; Public Health Service Act, as amended).
5 U.S.C. § 1009 (Federal Advisory Committee Act).
