Disparities in Early Intervention Program Participation by Children with Autism Spectrum Disorder in a US Metropolitan Area, 2006 to 2016

Josephine Shenouda, Emily Barrett, Amy L. Davidow, Kate Sidwell, William Halperin, Vincent M.B. Silenzio, Walter Zahorodny

Research output: Contribution to journalArticlepeer-review

Abstract

Importance: Multiple studies have shown the value of early interventions for autism spectrum disorder (ASD). In the US, the Early Intervention Program (EIP) is mandated by law (Part C of the Individuals With Disabilities Education Act [IDEA]) to provide services to all young children with delays or disabilities. However, the extent to which children with ASD participate in this key service system is unknown. Objectives: To evaluate EIP use by children with ASD from 2006 to 2016 and to describe the factors associated with EIP participation. Design, Setting, and Participants: This cross-sectional study used repeated data collected from 2006 to 2016 by active ASD surveillance of the New York-New Jersey metropolitan area as reported in the New Jersey Autism Study. The New Jersey Autism Study identified 4050 children aged 8 years with ASD from 2006 to 2016. Demographic and clinical data were collected and participation in an EIP was assessed through active surveillance. Data were analyzed from June to December 2021. Exposure: Sociodemographic factors associated with the outcome of EIP participation. Main Outcomes and Measures: Participation in an EIP assessed at age 8 years. Demographic, ecological, and clinical factors, as well as temporal patterns, were examined by using standard and multilevel logistic regression models. Results: Among 4050 children aged 8 years with ASD by active surveillance, 1887 (46.6%) received EIP services. Of these children, 3303 (81.6%) were boys; 1105 (27.3%) were Hispanic, 801 (19.8%) were non-Hispanic Black, 1816 (44.8%) were non-Hispanic White, and 328 (8.1%) were non-Hispanic other (included Alaska Native or American Indian and Asian or Pacific Islander). In adjusted regression models, non-Hispanic Black children with ASD had lower odds of EIP participation (adjusted odds ratio [AOR], 0.67; 95% CI, 0.54-0.84) compared with their non-Hispanic White peers, and children residing in affluent areas had higher odds of receiving EIP services (AOR, 1.71; 95% CI, 1.36-2.15) compared with children residing in underserved areas. Children with ASD born in 2008 had higher odds of EIP participation than children born in 1998 (AOR, 2.64; 95% CI, 2.07-3.36). Conclusions and Relevance: Early identification of ASD is an important public health priority and receipt of EIP services may improve ASD outcomes. Approximately half of the population of children aged 8 years with ASD received EIP services between 2006 and 2016, and EIP participation by children with ASD increased during the 10-year period. However, receipt of EIP services was marked by strong socioeconomic status- and race and ethnicity-based disparities. Universal ASD screening and additional strategies are needed to address disparities and to increase access to EIP services.

Original languageEnglish (US)
Pages (from-to)906-914
Number of pages9
JournalJAMA Pediatrics
Volume176
Issue number9
DOIs
StatePublished - Sep 2022
Externally publishedYes

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health

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