Families have told us for years that their loved ones are hard to find in the data, and that what isn't counted is too easy to overlook. That's why a new CDC study, accepted in the Journal of the American Academy of Child and Adolescent Psychiatry, is important.
Shaw and colleagues applied components of the 2025 consensus definition of profound autism to records of 8-year-olds in CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. It's the first population estimate to draw on the updated definition, which reflects years of work by researchers, clinicians, and families.
Using IQ, verbal status, and adaptive scores from the 2025 definition, about 1 in 185 eight-year-olds, or 16.5% of autistic children, were identified.
Using the same criteria as an earlier CDC analysis, identification rose from about 1 in 217 in 2016 to 1 in 139 in 2022. More people with profound autism are being counted.
The study could only use what was in children's records. Nearly half had no adaptive assessment, and no records documented the heart of the definition, the need for 24-hour adult supervision.
Researchers had to rely on proxies and statistical estimation to fill those gaps, and the authors call for better measurement.
This is a gap the field can close. A standard, documentable measure of 24/7 supervision need would change how we count, plan for, and support people with profound autism across the lifespan.
ARPA-H's new SPECTRA program, which is seeking tools that measure real-world function across the lifespan, may be one path forward. ARPA-H has committed to designing these tools with autistic people and their families. Submissions open in phases, and the first round closes October 18 at 5 p.m. ET.
Learn more about SPECTRA
If you're working on this, or want to be, we'd love to hear from you and help connect you with families and collaborators at [email protected].
We're grateful to the CDC team for this work and are reviewing the findings with our Medical and Scientific Advisory Board. Every step toward counting our loved ones is a step toward the support they need.
Families, research is one of the most direct ways to make sure our loved ones are counted. Sign up for study matching and we'll reach out when a new study matches your family.
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