Profound autism may become its own diagnosis amid debate

Advocates and some families are pressing to create a separate diagnosis for profound autism to identify people who need lifelong, intensive care; other researchers and autistic advocates warn a new label could risk stigma or divert attention from supports across the broader autism spectrum.

Families and advocates are pressing to make profound autism a distinct diagnosis to better identify people who need lifelong, intensive support. The issue has drawn attention as more children are diagnosed under the broader 2013 autism spectrum disorder definition. Supporters say a separate label could focus research and services on people who are nonspeaking or have severe intellectual disability and constant care needs. Some autistic researchers and advocates warn a new label could stigmatize individuals and shift attention away from services needed across the whole spectrum. Key facts: - The AP story profiles Matthew and Andrea Murphy and their twin sons, Connor and Ronan, who are 9 and described as having profound autism and needing near-constant care. - In the United States an estimated 1 in 31 children are diagnosed with autism spectrum disorder, and researchers estimate roughly a quarter of autistic people fall into the category described as profound autism, a term introduced by the Lancet Commission in 2021. - The 2013 move to a single autism spectrum disorder diagnosis broadened the category and, along with greater awareness, has increased diagnoses of people with lower support needs. - Advocates such as Judith Ursitti and some organizations argue a separate diagnosis could improve inclusion in research, development of treatments, and access to services for those with the highest needs. - Other experts, including autistic professionals like Dena Gassner, say the core problem is a widespread lack of services and worry a new label could be stigmatizing rather than solving gaps in support. - The Murphys rely on therapies, safety measures and community programs while facing uncertainty about adult services and long-term care and funding when public education supports end. Summary: Debate continues among families, advocacy groups and researchers about whether to create a separate diagnosis for profound autism and how best to ensure people with the highest support needs are included in research and services. Undetermined at this time.