CDC-Led Study Reveals Significant Data Gaps in Profound Autism Assessments for U.S. Children
A study led by researchers at the U.S. Centers for Disease Control and Prevention (CDC) has found that nearly half of the records for eight-year-old autistic children across 13 U.S. surveillance sites in 2022 lacked sufficient data to classify them for profound autism. The paper, authored by Kelly Shaw and colleagues and accepted by the Journal of the American Academy of Child & Adolescent Psychiatry, aimed to count this group using a definition revised in 2025. This definition requires an IQ below 50 or nonverbal/minimally verbal status, plus an adaptive functioning score of 70 or below. However, only 54.4% of the 7,084 children had enough information on file to apply the updated definition. Specifically, 61.1% had a recorded IQ, 74.0% had verbal status information, and 55.9% had an adaptive score, with 19.5% missing all three. The study highlights that assessments, when available, were often not recent, with median ages for IQ and adaptive tests being 70 and 65 months, respectively, for children classifi...