- The Lancet Commission, a group of 32 stakeholders, recently issued a call to create a new category of "profound autism."
- "Profound autism" describes those who also have intellectual disability, minimal language, and who require 24-hour supervision.
- The Commission expressed concern that this population is "at risk of being marginalized by a focus on more able individuals."
Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.
Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”
This move represents just the most recent example of a growing dissatisfaction with the monolithic diagnosis of Autism Spectrum Disorder that was introduced in DSM-5 eight years ago in place of more narrowly defined categories such as Asperger Syndrome, Autistic Disorder, and Pervasive Developmental Disability, Not Otherwise Specified (PDD-NOS). Last month, the National Council on Severe Autism (NCSA) — on whose board I serve — issued a position statement calling for a “distinct, stand-alone diagnostic category” for the most impaired, and the use of “autisms” rather than “autism” to emphasize the extraordinarily diverse presentations of the disorder has been popular for several years at the most prominent autism conferences, such as the International Society for Autism Research (INSAR).
It’s not that the architects of the DSM revision failed to acknowledge the need for precision with their Autism Spectrum Disorder (ASD) diagnosis. But their framework — which includes both specifiers (such as intellectual impairment, language impairment, catatonia, and others) as well as severity levels (1-3, with 3 being the most severe) to attach to problems with perseverative behavior and social communication — is, as the Lancet Commission aptly points out, “not easily or consistently used in practice or in research.” Instead, a law school graduate and a man who spends his days watching Teletubbies in a diaper and a helmet may both be described as “autistic.”
This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."
And this is not a small group. Perhaps the most alarming part of the Lancet Commission’s report is their prevalence estimate for profound autism. Based on studies from around the world, the authors suggest that between 18-48% of the almost 80 million autistic people in the world meet their criteria. This means there may be as many as 40 million individuals whose cognitive disabilities preclude career, marriage, parenthood, and independent living — and 40 million families whose lives revolve around helping them create joyful and meaningful lives anyway. Recognizing that their disorder is qualitatively different from those at the other end of the spectrum is the first step towards targeting research and clinical practice to treat their often incapacitating symptoms.
For “profound autism” to become an official diagnostic category, it would have to be adopted by the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM), and/or the World Health Organization’s International Classification of Diseases (ICD). Hopefully, the Lancet Commission won’t stop with this important report, but will continue to press these organizations to introduce meaningful sub-classifications into what has become, to some, an essentially meaningless diagnosis.