University of Minnesota researchers explored how we understand the prevalence of profound autism in children
MINNEAPOLIS/ST. PAUL (06/14/2023) — Published in Public Health Reports, University of Minnesota researchers found that among 8-year-old children diagnosed with autism, approximately 26% exhibited profound autism. Profound autism refers to a type of autism that involves significant support needs. These individuals may be minimally verbal or non-speaking and may have severe intellectual disabilities.
"Individuals with profound autism are an understudied group. Representing over a quarter of autistic people, those with profound autism have increased medical and behavioral needs,” said Amy Esler, PhD, co-principal investigator and an associate professor at the U of M Medical School. “The autism field needs to increase focus so we can better support these individuals and their families.”
In comparison to children with non-profound autism, those with profound autism were more likely to:
- Assigned female at birth
- Belong to a racial and ethnic minority group
- Be of a low socioeconomic status
- Be born preterm or with low birth weight
- Display self-injurious behaviors
- Experience seizure disorders
- Score lower on adaptive measures.
The study aimed to determine the prevalence of profound autism among the U.S. population. It was a partnership with the Centers for Disease Control and Prevention and 11 sites in the United States that estimate autism prevalence every two years. Drs. Esler and Jennifer Hall-Lande of the Institute on Community Integration co-lead the Minnesota study site.
Profound autism is a crucial term used to differentiate individuals with significant support needs from other autistic individuals with more verbal and intellectual abilities. Children with profound autism typically need 24-hour care to help with everyday tasks and ensure their safety, especially regarding self-harm, wandering and seizures.
The researchers believe future studies should investigate why there are demographic differences among individuals with profound autism. Additionally, researchers can aim to identify effective treatments and support systems that can enhance the developmental progress of those with profound autism. Such research can also focus on providing support to families, communities and professionals who care for individuals with profound autism.
Funding was provided by the Centers for Disease Control and Prevention, Autism and Developmental Disabilities Monitoring Network.
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