CDC Reports Profound Autism Statistics For The First Time
April 19, 2023 — The Centers for Disease Control and Prevention (CDC) today 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.
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. In her keynote address at the 2022 Autism Europe Congress, Dr. Catherine Lord, the George Tarjan Distinguished Professor of Psychiatry at the Semel Institute of Neuroscience and Human Behavior at the University of California, Los Angeles, reported results of a 30-year long longitudinal study that showed that the outcomes of people with profound autism are drastically different and far worse than the outcomes of those who are higher functioning.
“We need to know how many people have profound autism so that we can properly plan for their school and residential needs and improve the services they receive,” said Alison Singer, president of the Autism Science Foundation and co-author of the report. “Their needs are going to be very different than those of an autistic person graduating from Harvard Law School.”
Individuals with profound autism are also often excluded from research studies, in favor of higher functioning autistic individuals with higher IQ. “If our children are not included, then the research results don’t apply to them. We need research studies focused on the underlying medical causes of profound autism and interventions targeted at their specific needs, particularly their need to develop communication and language skills and reduce self-injury and aggression,” added Singer.
“People with profound autism consistently experience unique, devastating, and often unseen challenges that require immediate solutions, not only for them, but for their caregivers,” said Judith Ursitti, co-founder and president of the Profound Autism Alliance. “The continuing recognition of profound autism will open the doors to more inclusive research like the CDC’s. Only then can targeted advocacy increase access to critically needed supports and services for this marginalized population.”