Should people with autism and very high needs have a separate diagnosis? Takeaways from AP’s report

The call for recognition of “profound autism” has gained momentum as advocates argue that individuals requiring constant, lifelong care are being overlooked within the increasingly broad autism spectrum disorder diagnosis. This push aims to ensure proper support and services for those with the highest needs.

Judith Ursitti, president of the Profound Autism Alliance, highlights a critical gap in the current system. “If you don’t have research, you won’t have treatments. You won’t have achievable services and supports,” said Ursitti, whose adult son has profound autism. “There are people across the spectrum who have high support needs that are intermittent. The difference with our population is they’re constant.”

The expanding definition of autism has created a paradoxical situation. As autism diagnosis rates climb—now estimated at 1 in 31 children in the United States—increased awareness and broader diagnostic criteria have primarily identified milder cases. Meanwhile, those with the most severe forms of autism, who require round-the-clock care, often find themselves without appropriate resources.

Experts estimate that approximately 25 percent of people diagnosed with autism would fall under the “profound autism” category. The Lancet Commission introduced this term in 2021 to describe individuals who need constant care throughout their lives, have significant intellectual disabilities, and are either nonverbal or minimally verbal.

The diagnostic landscape shifted significantly in 2013 when the American Psychiatric Association removed previous subtypes like autistic disorder and Asperger’s syndrome—which had been under the umbrella of pervasive developmental disorders—and consolidated them into autism spectrum disorder. This change aimed to improve diagnostic precision but has inadvertently created challenges in addressing varying support needs.

The debate surrounding profound autism isn’t without controversy. Some members of the autism community worry that creating a separate category might diminish attention on the broader spectrum and the individualized needs of everyone on it.

Dena Gassner, an autistic senior research scientist at Drexel University and mother of an autistic adult with moderate support needs, expresses concerns about potential stigmatization. “We need to come together in a unified voice to talk about services for the entirety of the spectrum,” she argues, emphasizing that the issue isn’t autism itself but rather “the massive lack of supports and services” in society.

Adding to the complexity of the situation, the current political landscape has sometimes muddied public understanding of autism. The Trump administration has promoted unproven and debunked claims about autism causation, which experts warn could undermine scientific progress and fuel health misinformation, even as more funding is directed toward research.

Despite disagreements on terminology, many stakeholders acknowledge the urgent need for better resources. Andy Shih, chief science officer for Autism Speaks, notes that regardless of where people stand in the debate about profound autism, “there’s absolutely no doubt that we need to elevate awareness about the needs of this group.”

The profound autism discussion highlights a fundamental challenge in neurological condition classification: balancing inclusive diagnosis with specialized support. For families managing constant caregiving responsibilities, the distinction isn’t academic—it directly impacts their access to appropriate therapies, trained providers, and supportive services.

This conversation occurs against a backdrop of strained healthcare and social service systems, where limited resources are already stretched thin. Advocates argue that recognizing profound autism would help direct specialized resources to those with the most intensive support needs, while others emphasize the importance of improving services across the entire spectrum.

As research continues and advocacy efforts grow, the autism community faces the challenge of ensuring that expanding awareness translates into meaningful support for everyone affected, particularly those with the highest level of needs.