The Centers for Disease Control and Prevention 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 IQ <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 or 1 in 218.

"We need to know how many people have profound autism so that we can properly plan for their 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."

"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, 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."