Research Depicts “Profound Autism” as Very Different than “Autism Spectrum Disorder”
The Centers for Disease Control and Prevention (CDC) recently reported that 26.7% of individuals with autism qualify as having “profound autism,” defined as having the disorder with an intelligence quotient (IQ) score <50 or being nonverbal or minimally verbal. This is the first time CDC has investigated and reported on profound autism prevalence rate data. The authors determined that the rate of profound cases increased from approximately three cases per 1,000 children in 2000 to about five cases per 1,000 in 2016. This report analyzed population-based surveillance data from the Autism and Developmental Disabilities Monitoring Network (ADDM) for 20,135 children aged 8 with autism from 2000-2016. The data showed 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, have self-injurious behaviors, have seizure disorders, and have lower adaptive skills. The report also highlights that “profound autism” is markedly different from the broader diagnosis of “autism spectrum disorder” and points out that children with profound autism may have considerable medical complexity. It is unlikely that these more affected children will be able to live independently or perform daily living tasks as they grow older. The authors concluded their report by emphasizing that calculating the number of individuals with profound autism and describing their needs is extremely important. It will ensure this vulnerable group receives the services and support needed during their lifetimes. They also called for more research specific to those with profound autism, especially as they transition to adolescence and adulthood.
