Joshua S Anbar, Amber Catalan, Tyra Bozek, Jennifer Andrews
Educational and clinical systems identify overlapping but systematically different subsets of children with ASD. These differences in community recognition have important implications for public health surveillance and highlight the influence of institutional frameworks on how autism is identified in the community.
PURPOSE: Public health surveillance of autism spectrum disorder (ASD) relies on identifying the condition in educational and/or clinical contexts. However, the criteria used to operationalize ASD for special education exceptionality and for clinical diagnosis emphasize different features of the condition. This study examined whether educational and clinical methods of community recognition of ASD identify the same children.
METHODS: Data from the Arizona site of the Autism and Developmental Disabilities Monitoring Network (n = 873) were used to assess (1) associations between record source availability and community recognition of ASD, (2) agreement between special education exceptionality and ICD-based clinical identification, and (3) sociodemographic predictors of community recognition category using multinomial regression.
RESULTS: Having multiple record sources was associated with recognition of ASD through both educational and clinical systems. Among children with both education and clinical records, agreement between special education exceptionality and ICD coding was minimal (Cohen's κ=-0.001). Special education exceptionality demonstrated moderate sensitivity but low specificity relative to ICD coding. Distinct sociodemographic patterns characterized recognition pathways, with children residing in higher social vulnerability areas more likely to be identified through special education exceptionality only. Non-Hispanic African American children were significantly more likely to be identified through a single-system recognition pathway rather than through both educational and clinical systems.
CONCLUSION: Educational and clinical systems identify overlapping but systematically different subsets of children with ASD. These differences in community recognition have important implications for public health surveillance and highlight the influence of institutional frameworks on how autism is identified in the community.