Defining Profound Autism

The publication of Developing a Consensus Research Definition for Profound Autism Using a Modified Delphi Method marks an important milestone for research. Building on the 2021 Lancet Commission, which introduced the term profound autism, and the 2023 CDC prevalence study, this new paper establishes a consensus research definition that researchers can use to study profound autism more consistently.

Siegel, M., Lord, C. L., Tager-Flusberg, H., et al. Developing a consensus research definition for profound autism using a modified Delphi method. Molecular Autism, 17, 28 (2026). https://doi.org/10.1186/s13229-026-00727-y

Sibling Action Network

Siblings of people with profound autism experience unique realities often unseen by those around them. The Profound Autism Alliance Sibling Action Group was created by siblings for siblings and works to provide connection and practical solutions.