The Centers for Disease Control and Prevention (CDC) has announced a new classification of autism to better distinguish between the more and less severe cases of the disorder. The CDC study, published in the Public Health Reports journal, found that 26.7% of children with autism have “profound autism”, indicating that they are on the more severe end of the spectrum. These children are nonverbal, minimally verbal, or have an IQ of less than 50. The findings were published in the journal Public Health Reports.
The study also found that children with profound autism are more likely to be girls, come from a lower socioeconomic household, or be from minority racial and ethnic groups. Researchers looked at data from the CDC’s Autism and Developmental Disabilities Monitoring Network, which collects data on the number and characteristics of children with autism. The study analyzed 20,135 children with autism across 15 sites who were 8 years old between 2000 and 2016.
The prevalence of autism across the spectrum has increased over time, but there has been a more significant increase for those that presented a milder case. This means that over time, there has been a lower proportional representation of those with profound autism compared to those with non-profound autism.
Alison Singer, president of the Autism Science Foundation and a co-author of the new report, emphasized the importance of knowing how many people have profound autism so that we can properly plan for their school and residential needs and improve the services they receive. She explained that their needs are going to be very different from those of an autistic person graduating from Harvard Law School.
Judith Ursitti, president of the Profound Autism Alliance, said that people with profound autism consistently experience unique, devastating, and often unseen challenges that require immediate solutions, not only for them but for their caregivers. Ursitti believes that the continuing recognition of profound autism will open doors to more inclusive research like the CDC’s, which will help increase access to critically needed support and services for this marginalised population.
The findings of the study are important for children to receive the care and attention they need. Policies and programs could consider the needs of people with profound autism across their lifespan to ensure their needs are met. The prevalence ratio of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander, non-Hispanic Black, and Hispanic children than among non-Hispanic White children. Therefore, the findings also have important implications for health equity in the US.
