Community testing practices for autism within the autism and developmental disabilities monitoring network

Ashley Robinson Williams; Esther Amoakohene; Matthew J Maenner; Walter Zahorodny; Monica DiRienzo; Andrea Grzybowski; Jennifer Hall-Lande; Elise T Pas; Amanda V Bakian; Maya Lopez; Mary Patrick; Josephine Shenouda; Kelly A Shaw

doi:10.1111/ppe.13077

Community testing practices for autism within the autism and developmental disabilities monitoring network

Paediatr Perinat Epidemiol. 2024 Mar 26. doi: 10.1111/ppe.13077. Online ahead of print.

Authors

Affiliations

¹ National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
² Oak Ridge Institute for Research and Education, Oak Ridge, Tennessee, USA.
³ Rutgers New Jersey Medical School, Newark, New Jersey, USA.
⁴ University of California, San Diego, California, USA.
⁵ University of Minnesota, Minneapolis, Minnesota, USA.
⁶ Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
⁷ University of Utah School of Medicine, Salt Lake City, Utah, USA.
⁸ University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA.

PMID: 38531639
DOI: 10.1111/ppe.13077

Abstract

Background: No data exist at the population level on what tests are used to aid in the diagnosis of autism spectrum disorder in community practice.

Objectives: To describe autism spectrum disorder testing practices to inform autism spectrum disorder identification efforts.

Methods: Data are from the Autism and Developmental Disabilities Monitoring Network, a multi-site surveillance system reporting prevalence estimates and characteristics of 8-year-old children with autism spectrum disorder. Percentages of children with autism spectrum disorder who received any autism spectrum disorder test or a 'gold standard' test were calculated by site, sex, race, median household income, and intellectual ability status. Risk ratios were calculated to compare group differences.

Results: Of 5058 8-year-old children with autism spectrum disorder across 11 sites, 3236 (64.0%) had a record of any autism spectrum disorder test and 2136 (42.2%) had a 'gold standard' ADOS or ADI-R test. Overall, 115 children (2.3%) had both the ADOS and ADI-R in their records. Differences persisted across race, median household income, and intellectual ability status. Asian/Pacific Islander children had the highest percent receiving any ASD test (71.8%; other groups range: 57.4-66.0%) and White children had the highest percent receiving 'gold standard' tests (46.4%; other groups range: 35.6-43.2%). Children in low-income neighbourhoods had a lower percent of any test (62.5%) and 'gold standard' tests (39.4%) compared to medium (70.2% and 47.5%, respectively) and high (69.6% and 46.8%, respectively) income neighbourhoods. Children with intellectual disability had a lower percent of any ASD test (81.7%) and 'gold standard' tests (52.6%) compared to children without intellectual disability (84.0% and 57.6%, respectively).

Conclusions: Autism spectrum disorder testing practices vary widely by site and differ by race and presence of co-occurring intellectual disability, suggesting opportunities to standardise and/or improve autism spectrum disorder identification practices.

Keywords: ADI‐R; ADOS; autism spectrum disorder; diagnosis; gold standard; public health surveillance.