Profound Autism

ASF President Alison Singer co-authored a 2021 Lancet Commission report that formally recognized the need for and endorsed the use of the term “profound autism” for the first time in a peer-reviewed medical journal. As outlined by The Lancet Commission’s report, those with “profound autism”:

  • Are at least 8 years old
  • Require 24-hour access to an adult who can care for them
  • Have a cognitive ability measured by IQ of less than 50 and/or non-speaking or minimal verbal ability  

ASF believes the use of the term “profound autism” will provide critical specificity to the extremely broad autism spectrum. This will equip parents, service providers and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more precise interventions.

Amy and her son, James (age 19), riding their bicycles.

The Centers for Disease Control and Prevention (CDC)reported 26.7 percent of people with autism spectrum disorder have profound autism. It is the first time this statistic has been reported using CDC-collected data and reflects a growing awareness that “profound autism” is different from the broader “autism spectrum disorder.” The report, titled “The Prevalence and Characteristics of Children with Profound Autism, 15 Sites, United States, 2000-2016,” was published in the peer-reviewed scientific journal Public Health Reports, the official journal of the Office of the U.S. Surgeon General, and the U.S. Public Health Service.

ASF’s successful #ThisIsProfoundAutism social media campaign led to the publication of the #ThisIsProfoundAutism book , which movingly highlights stories of people with profound autism and calls on legislators and other decision-makers to consider people with profound autism when making policy decisions.

Learn more:

Labels can harm, but they can also help: See ‘profound autism
STAT News op-ed by Alison Singer, published Dec. 7, 2021

Do we need new terms for autism?
Dr. Catherine Lord of UCLA’s Semel Institute for Neuroscience and Human Behavior at ASF’s 2020 Day of Learning

Listen: A parent on advocating for people with autism who can’t advocate for themselves
STAT podcast with Alison Singer, published Dec. 15, 2021