Separate “profound autism” diagnosis raises questions about support and stigma
A growing debate in the United States is testing whether the autism diagnosis framework should add a distinct label for people who need constant, lifelong support—an idea promoted by some advocates as a way to direct care, services and research toward those with the highest needs. The discussion has intensified as the autism spectrum diagnosis has broadened over time and families say services and trained providers have not kept pace with people who require round-the-clock support.
Judith Ursitti, president of the Profound Autism Alliance, said people who fit the proposed “profound autism” category now lack “appropriate treatments, support and enough providers trained to handle their level of care.” She said the problem is not that people across autism differ in the kinds of help they need, but that those in the “profound” category require support that is constant rather than intermittent.
“If you don’t have research, you won’t have treatments. You won’t have achievable services and supports,” Ursitti said, adding that the difference for her group is that their needs are “constant.” She made the argument in the context of what she said is limited research inclusion for people with very high support needs, including the concern that studies often do not capture their needs and therefore do not translate into achievable services.
The proposed “profound autism” label describes a subset of people who, according to estimates discussed by researchers, need constant care for life, have a certain level of intellectual disability and are nonverbal or minimally verbal. The term was introduced in 2021 by a group of experts in the Lancet Commission.
The framing comes as autism spectrum disorder has become more widely defined, with a range that includes people with low support needs. In parallel, awareness and screening have helped more children receive autism diagnoses, and many of those cases are described as relatively mild—conditions that, some advocates say, have shifted focus within systems meant to deliver support.
Critics and some members of the autism community say creating a separate diagnosis could shift attention away from the broader spectrum. Dena Gassner, an autistic senior research scientist at Drexel University and mother of an autistic adult with moderate support needs, said she struggles with assigning the “profound autism” label and warned that it could be stigmatizing. Gassner said the issue is not that autism itself is wrong, but what she described as the “massive lack of supports and services” in society, and argued that advocates should speak together “about services for the entirety of the spectrum.”
Other autism organizations argue the need is to raise awareness of the group’s needs regardless of how the diagnosis debate plays out. Andy Shih, chief science officer for Autism Speaks, said that “there’s absolutely no doubt that we need to elevate awareness about the needs of this group.”
Behind the clinical question is a changing diagnostic history. In 2013, the American Psychiatric Association removed a prior diagnosis structure that included “autistic disorder” as one of five subtypes—along with Asperger’s—under the umbrella of pervasive developmental disorders, and replaced it with autism spectrum disorder.
The discussion also arrives amid concerns that public claims about autism can muddy understanding and harm public health. The debate includes criticism that the Trump administration has promoted unproven and debunked claims about what causes autism, even as officials funnel money into research, according to the reporting on the issue.