Barriers to referral and evaluation and corresponding navigation services for toddlers screening positive for autism spectrum disorder.

作者：Kristina Hightshoe, Silvia Gutiérrez-Raghunath, Margaret M. Tomcho, Cordelia Robinson Rosenberg, Steven A. Rosenberg, Jodi K. Dooling-Litfin, Jeanette M Cordova, Kathryn L. Colborn, Carolyn G DiGuiseppi · 发表于：Families Systems & Health · 年份：2023 · DOI：10.1037/fsh0000786 · 被引用次数：9 · 研究领域：Autism Spectrum Disorder Research、Family and Disability Support Research、Infant Development and Preterm Care

INTRODUCTION: Children from disadvantaged populations receive referrals, diagnoses, and services for autism spectrum disorder (ASD) late or not at all. We describe barriers to referral for and receipt of evaluation for ASD among young children from disadvantaged families and activities by autism family navigators (AFNs) to address these barriers. METHOD: Trained AFNs offered navigation to families of children aged 16-30 months with positive ASD screens from community health center clinics in 2015-2018. AFNs interviewed families to identify perceived barriers to care and documented system barriers and navigation activities. We coded, categorized, and described barriers and AFN activities. Case studies illustrate barriers and navigation activities. RESULTS: Of 22 participating mothers, 82% were Latinx and 64% were native Spanish-speaking; 71% had household incomes <$30,000/year and 57% had no high school diploma. Half of the families experienced five or more barriers to ASD evaluation, most commonly pragmatic barriers. Information barriers/needs were 5 times more common among Spanish-speaking than English-speaking mothers. One-fifth of families identified negative experiences or expectations of care. System barriers included incomplete screening tests, inadequate referrals, and waiting lists. AFNs implemented navigation activities, most frequently categorized as care coordination (95%), education (68%), social/emotional support (36%), family advocacy (27%), and self-advocacy co...