Debate Over Separate Diagnosis for 'Profound Autism'

Feb 16, 2026

69 min

Feb 16, 2026 06:31

'Profound autism': Should people with autism and very high needs have a separate diagnosis?

## Push for New Diagnosis

There is a growing movement to establish a distinct diagnosis for individuals with autism who require constant, lifelong care. This proposed category, termed "profound autism," aims to ensure these individuals receive the necessary support and services.

Judith Ursitti, president of the Profound Autism Alliance, highlights the lack of appropriate treatments and trained providers for this group. She emphasizes the need for targeted research to develop effective services.

## Rising Autism Rates

Autism diagnoses have increased over the years, partly due to a broader definition that includes individuals with varying support needs. This expansion has inadvertently shifted focus away from those with severe needs.

Currently, about 1 in 31 children in the US are diagnosed with autism spectrum disorder, with an estimated quarter falling under the "profound autism" category. This term was introduced in 2021 by the Lancet Commission to describe individuals needing lifelong care, often with intellectual disabilities and limited verbal abilities.

## Concerns and Debate

Some in the autism community express concern that a separate diagnosis might detract from the broader spectrum's needs. Dena Gassner, a senior research scientist, argues that the issue lies in the lack of societal support rather than the diagnosis itself.

Andy Shih from Autism Speaks stresses the importance of raising awareness about the needs of those with profound autism, regardless of the debate over a separate diagnosis.

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