In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
Shaw, K. A., Russell, L. A., DiRienzo, M., Patrick, M. E., Valencia-Prado, M., Bilder, D., Esler, A., Pierce, K., Vanegas, S. B., Washington, A., Alford, A., Anbar, J., Mehta, R., & Maenner, M. J. (2026). Profound autism prevalence and assessment practices in a population-based study. Journal of the American Academy of Child & Adolescent Psychiatry. Advance online publication. https://doi.org/10.1016/j.jaac.2026.09.019
Abstract
Objective
Profound autism is a proposed subcategory of autism that includes individuals unable to meet basic daily adaptive needs and requiring 24-hour care. This report describes documented assessment practices and profound autism prevalence derived using different definitions.
Method
Among 7,084 children 8 years of age with autism from a population-based surveillance program in 13 US sites in 2022, we calculated the availability of IQ, verbal status, and adaptive data. We imputed missing data to calculate profound autism prevalence using the “updated” (2025) definition, which includes having the following: (1) either an intellectual quotient (IQ) score of <50 OR being nonverbal/minimally verbal AND (2) adaptive functioning significantly below age level (≤70). We compared prevalence using the updated definition to using the “prior” (2021) profound autism definition that did not incorporate adaptive scores, the updated definition with higher IQ score cutoff (≤70), and using only nonverbal/minimally verbal status and adaptive ≤70.
Results
Among children with autism, 61.1% had IQ data, 74.0% had verbal status data, and 55.9% had adaptive data available. Cognitive data (IQ or verbal status) and adaptive data were available to determine profound autism status for 54.4%. After imputation, updated definition profound autism prevalence was 5.4 (95% CI = 5.1-5.8) and nonprofound autism prevalence was 27.5 (95% CI = 26.8-28.1) per 1,000 children 8 years of age in 2022. Of children with autism, 16.5% met the updated profound autism definition, and 32.1% met one element of the definition but did not meet full criteria. Prevalence was 33.5% higher using the prior definition, 70.9% higher using the updated definition with higher IQ score cutoff, and 33.3% lower using only nonverbal/minimally verbal status and adaptive ≤70.
Conclusion
Prevalence of nonprofound autism was higher than profound autism. Adaptive or other assessments underlying the profound autism definition were missing almost half of the time. Community evaluation practices and the profound autism definition can evolve to better understand and meet needs of individuals with autism.
