Latino Caregivers’ Facilitators and Recommendations for Accessing an ASD Diagnosis and Services in California

Background: Numerous barriers have been associated with the challenges involved in obtaining comprehensive early intervention for children with Autism Spectrum Disorder (ASD). Specifically, several studies have found that race, ethnicity, and socioeconomic status have been associated with a delay in the diagnosis of ASD and access to services (Liptak et al., 2008; Mandell et al., 2005; Parish et al., 2012). Latino children are typically diagnosed at a later age and receive poorer quality of health care compared to their white peers (Mandell et al., 2009; Magaña et al., 2013; Magaña et al., 2016; Parish et al., 2012). Furthermore, few studies have thoroughly examined the cultural relevance of ASD interventions to meet the needs of Latino children with ASD and their families. The present investigation examines how sociocultural factors influence Latino immigrant families’ navigation efforts of California’s Health Care System.

Objectives: This study’s primary objective was to examine Latino Spanish-speaking caregivers’ experiences that facilitated a prompt ASD diagnosis for their children, as well as caregivers’ recommendations on how to navigate systems of care more efficiently.

Methods: Participants were 12 Latino caregivers for children with autism (m_age (SD) = 38.9 (5.2), n = 11 females). Two focus groups and three interviews were conducted across two sites in California. The aim was to collect information regarding caregivers’ experiences in gaining access to an ASD diagnosis and services for their children. Eligible participants must have had a child between the ages of two and eight who had received a diagnosis of ASD within the last two years. All participants reported a low income or little access to resources at the time of recruitment. Interviews and focus groups were led by Spanish-speaker moderators, audio-recorded, and later transcribed into Spanish. Guided by the principles of thematic analysis, transcripts were open-coded to elicit major themes.

Results: Analyzed data revealed eight overarching themes concerning accessibility to an ASD diagnosis and obtaining ASD-specific services. These themes were grouped into two overarching domains: process facilitators and caregivers’ recommendations. Four themes were identified for caregiver experiences after securing evaluations and services for their children: (a) caregiver proactivity, b) identification of ASD symptomology, c) caregiver support, and d) resource accessibility. Specifically, caregivers consistently noted advice and support from friends, service providers, medical providers, and other paraprofessionals that proved essential when searching for diagnoses and services. Qualitative data also revealed caregiver recommendations for successfully navigating healthcare systems and seeking an ASD diagnosis: obtaining knowledge regarding ASD symptomatology and services, standardizing more efficient ways to disseminate information, identifying ASD red flags in a timely manner, and accessing comprehensive evaluations and early intervention services.

Conclusions: Disparities persist in access and utilization of ASD quality care among families from low-SES and ethnic minority backgrounds. In this study, immigrant caregivers’ provided several process facilitators and recommendations as a means to gain access to comprehensive evaluation services, and secure early intervention services for their children. Future research should attempt to incorporate these findings into evidence-based intervention programs that can be best disseminated and implemented in community settings.