Lisa D Wiggins1, Maureen Durkin2, Amy Esler3, Li-Ching Lee4, Walter Zahorodny5, Catherine Rice6, Marshalyn Yeargin-Allsopp1, Nicole F Dowling1, Jennifer Hall-Lande7, Michael J Morrier6, Deborah Christensen1, Josephine Shenouda5, Jon Baio1. 1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia. 2. Department of Population Health Sciences, School of Medicine and Public Health, University of Wisconsin, Madison, Wisconsin. 3. Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota. 4. Department of Epidemiology, Bloomberg School of Public Health, John Hopkins University, Baltimore, Maryland. 5. Department of Pediatrics, Rutgers New Jersey Medical School, Newark, New Jersey. 6. Department of Psychiatry, Early Emory Center for Child Development and Enrichment, Emory University, Atlanta, Georgia. 7. Institute on Community Integration, University of Minnesota, Minneapolis, Minnesota.
Abstract
The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records. Among 4,498 children, 1,135 (25%) had ASD indicators without having an ASD diagnosis. Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school. Factors associated with not having a clinical diagnosis of ASD were non-White race, no intellectual disability, older age at first developmental concern, older age at first developmental evaluation, special education eligibility other than ASD, and need for fewer supports. These results highlight the importance of reducing disparities in the diagnosis of children with ASD characteristics so that appropriate interventions can be promoted across communities. Autism Res 2020, 13: 464-473.
The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records. Among 4,498 children, 1,135 (25%) had ASD indicators without having an ASD diagnosis. Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school. Factors associated with not having a clinical diagnosis of ASD were non-White race, no intellectual disability, older age at first developmental concern, older age at first developmental evaluation, special education eligibility other than ASD, and need for fewer supports. These results highlight the importance of reducing disparities in the diagnosis of children with ASD characteristics so that appropriate interventions can be promoted across communities. Autism Res 2020, 13: 464-473.
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