Progress and Disparities in Early Identification of Autism Spectrum Disorder: Autism and Developmental Disabilities Monitoring Network, 2002-2016

• Published in: Journal of the American Academy of Child and Adolescent Psychiatry Vol. 61; no. 7; pp. 905 - 914
• Main Authors: Shaw, Kelly A., McArthur, Dedria, Hughes, Michelle M., Bakian, Amanda V., Lee, Li-Ching, Pettygrove, Sydney, Maenner, Matthew J.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.07.2022; Elsevier BV
• Subjects: Age; Autism; autism spectrum disorder; Autism Spectrum Disorder - diagnosis; Autism Spectrum Disorder - epidemiology; Autism Spectrum Disorders; Autistic children; Autistic Disorder; Black people; Child; Child, Preschool; Children; Children & youth; Comorbidity; Developmental Disabilities; Diagnosis; Enrollments; epidemiology; Ethnicity; health status disparities; Hispanic people; Humans; Identification; Intellectual disabilities; intellectual disability; Intellectual Disability - diagnosis; Intellectual Disability - epidemiology; Medical diagnosis; Minority & ethnic groups; Pediatrics; Prevalence; Psychiatric/Mental Health; Race; Racial inequality; Special education; Surveillance; Surveillance systems; United States - epidemiology; United States; United States > US; Maryland; epidemiology; health status disparities; autism spectrum disorder; intellectual disability
• ISSN: 0890-8567; 1527-5418; 1527-5418
• DOI: 10.1016/j.jaac.2021.11.019

Early identification can improve outcomes for children with autism spectrum disorder (ASD). We sought to assess changes in early ASD identification over time and by co-occurring intellectual disability (ID) and race/ethnicity. Using data for 2002-2016 from a biennial population-based ASD surveillance program among 8-year-old children in the United States, we defined identification as a child’s earliest recorded ASD diagnosis or special education eligibility. Unidentified children had characteristics meeting the ASD surveillance case definition but no recorded identification by age 8 years. We calculated median age at identification among identified children, median age at identification including unidentified children, and cumulative incidence of identification by age 48 months. ASD identification by age 48 months was 4 times (95% CI: 3.6-4.3) as likely in 2016 as in 2002, with the largest increases among children without ID. Median age at ASD identification among identified children decreased 3 months during this time. Children of every race/ethnicity were more likely to be identified over time. There were racial disparities stratified by ID: in 2016, Black and Hispanic children without ID were less likely to be identified with ASD than were White children (both groups risk ratio: 0.7; 95% CI: 0.5-0.8), but Black children were 1.5 times (95% CI: 1.3-1.9) as likely as White children to be identified with ASD and ID. Substantial progress has been made to identify more children with ASD early, despite minimal decrease in median age at diagnosis. Considerable disparities remain in early ASD identification by race/ethnicity and co-occurring intellectual disability.