IACC Recommends Profound Autism Term and Guidance

The Interagency Autism Coordinating Committee voted on April 28 to recommend that federal health agencies adopt the term "profound autism" to describe individuals on the autism spectrum with the highest support needs and improve clinical guidance for addressing co-occurring medical conditions in autistic people.

The committee, which guides about $2 billion in annual federal autism research funding and coordinates efforts among agencies including the National Institutes of Health and Centers for Disease Control and Prevention, held its first meeting since Health and Human Services Secretary Robert F. Kennedy Jr. appointed a new chair and all 20 public members in January. The panel includes 22 federal agency representatives. Public members, largely parents of autistic children or autistic individuals themselves, approved the proposals. Many federal representatives abstained, citing a need for more time to review them with their agencies.

The recommendations define profound autism as involving little or no ability to speak and a requirement for continuous supervision. According to 2023 CDC estimates, 26.7 percent of 8-year-olds with autism meet this threshold. A 2021 Lancet...