On December 6th, a group of autism researchers commissioned by The Lancet released a report on the future of autism services and research. This report primarily deals with the need for better services and research for autistic people, including the need for individualized services, and research that prioritizes quality of life. Unfortunately, media coverage of this report has focused on a brief recommendation to create an administrative classification called “profound autism.” Articles about the report have focused on this recommendation, and some have used it to argue that “profound autism” should be a separate autism diagnosis, in spite of the fact that the report specifically says it is not being proposed as a diagnostic term. Autistic people are failed by this coverage. It is a shame that a report focused on the need to improve and research services and support for autistic people is being overshadowed by a sidebar recommendation to apply functioning labels to autistic people with the highest support needs — a recommendation which will fail to improve services or quality of life for these individuals.
Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. The reality is that autistic people, just like people with Down Syndrome or Cerebral Palsy, have a wide range of abilities and support needs, for lots of different reasons. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.
Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.
Instead of rehashing old, harmful arguments about functioning labels, we should focus on improving the services available to all autistic people — which is what the majority of the Lancet Commission report is actually about. Many autistic people with a wide range of needs go without any services, and even those of us with services too often lack the kind of robust, high-quality, individualized, and respectful supports that would truly enable us to live our best lives. To begin to address this, researchers and policymakers must focus on services that can improve quality of life. When a report directing researchers to do just that is derailed to promote functioning labels, this harms autistic people. We need media outlets — and autism organizations — to focus on recommendations that will truly make a difference in the lives of autistic people. Our community’s unmet needs are critical, and must not be pushed under the rug in favor of resurrecting harmful functioning labels once more. ASAN will continue to advocate for research and services that meet the needs, and promote the dignity, of all autistic people.