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CDC: New classification: 'Profound autism'; study finds it's 25% of autism

Apr 24, 2023, New York Post: ‘Profound autism’ makes up 1 in 4 cases: CDC

The Centers for Disease Control and Prevention is adopting a new classification of autism that will help further make a distinction between the more and less severe ends of the spectrum.

A study by the CDC published in the Public Health Reports journal found that 26.7% of kids with autism have “profound autism.”

Children with “profound autism” are on the more severe end of the spectrum, meaning that they are nonverbal, minimally verbal or have an IQ of less than 50.

The study found that those with “profound autism” were more likely to be girls, come from a lower socioeconomic household, or be from minority racial and ethnic groups.

“People with profound autism consistently experience unique, devastating, and often unseen challenges that require immediate solutions, not only for them, but for their caregivers,” Judith Ursitti, president of the Profound Autism Alliance, said in a release.

“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.”

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 — analyzing 20,135 children with autism across 15 sites who were 8 years old between 2000 and 2016….

Findings showed that the prevalence of autism on all ends of the spectrum increased over time, but there was a more significant increase for those that presented a more mild 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,” Michelle Hughes, the epidemiologist at the CDC’s National Center on Birth Defects and Developmental Disabilities who led the study, said.

The findings are important for kids to get the care and attention they need.

“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,” Alison Singer, president of the Autism Science Foundation and a co-author of the new report and a member of the Lancet commission, said.

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


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