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

Abstract

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 coaching (23%). AFNs also trained providers and staff to improve screening and referral implementation.

Discussion: In this largely Latinx sample, families experienced numerous barriers to obtaining ASD evaluations for their screen-positive children, likely reflecting the complexity of negotiating both healthcare and educational systems. Trained AFNs can assist parents to overcome barriers to timely diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).