• Posted April 19, 2023

About 1 in 4 People on Autism Spectrum Has 'Profound' Autism

While mild cases make up the majority of autism diagnoses, "profound" autism affects about 27% of American children with the developmental disability, the U.S. Centers for Disease Control and Prevention reported Wednesday.

This is the first time the CDC has broken down that definition statistically.

Children with profound autism are nonverbal, minimally verbal or have an IQ of less than 50, according to the report.

"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,"Ursitti said in a news release from the Autism Science Foundation.

One in 36 U.S. children has an autism spectrum disorder. They can have difficulty interacting with others, communicating, learning and behaving.

For the new report, the CDC analyzed 2000-2016 data from the Autism and Developmental Disabilities Monitoring Network for more than 20,000 children aged 8 with autism.

The report found that 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, and have self-injurious behaviors and seizure disorders. They also have lower adaptive scores, which refers to skills needed for daily living.

The prevalence of profound autism was 4.6 per 1,000 8-year-olds in 2016, according to the report.

Scientific literature only began mentioning profound autism in 2021, when the term appeared in a report from The Lancet Commission on the Future of Care and Clinical Research in Autism.

That report said using 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.

While increases in autism prevalence in recent years have tended to be among people with milder symptoms, those with profound autism have much greater needs, the Autism Science Foundation noted.

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, according to the foundation.

Other research has shown the outcomes of people with profound autism are far worse than those of people with high-functioning autism. Those results were reported at the 2022 Autism-Europe Congress.

"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 that report. "Their needs are going to be very different than those of an autistic person graduating from Harvard Law School."

Also, individuals with profound autism are often excluded from research studies, in favor of higher functioning autistic individuals with higher IQ, the foundation noted.

"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,"Singer said in the release.

The CDC paper was published April 19 in Public Health Reports, the journal of the Office of the U.S. Surgeon General and the U.S. Public Health Service.

More information

The U.S. National Institute of Mental Health has more on autism spectrum disorder.

SOURCE: Autism Science Foundation, news release, April 19, 2023