Study Charts Changing Prevalence of Profound and Non-Profound Autism
Amy Esler PhD, and Jennifer Hall-Lande, PhD, are co-authors on “The Prevalence and Characteristics of Children with Profound Autism, 15 Sites, United States, 2000-2016,” which 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. They 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 paper analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network for 20,135 children aged 8 with autism during 2000-2016. The definition of profound autism that was applied was being nonverbal, being minimally verbal, or having an intelligence quotient <50.
The report found that the percentage of 8-year-old children with profound autism among those with autism was 26.7 percent. Compared with children with non–profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight, have self-injurious behaviors, have seizure disorders, and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1,000 8-year-olds.
The first mention of “profound autism” in scientific literature came in 2021 in The Lancet Commission on the Future of Care and Clinical Research in Autism report. That report stated that the term “profound autism” was critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism. In reviewing several international datasets of people with autism, the Lancet Commission estimated that close to 30 percent of the autism population falls into the category of profound autism.
Much of the increase in autism prevalence over the past decade has been in people with milder symptoms whose medical and service needs are dramatically different than people with intellectual disability or minimal language. Children with profound autism often require round-the-clock care to assist with daily living activities and to keep them safe from self-injurious behaviors, wandering, and seizures.