A Cross-Site Examination of Barriers to Diagnosis and Service Utilization for Autism Spectrum Disorder (ASD) Among Latino Families in California

Background:  Several barriers have been associated with the challenges involved in obtaining effective early interventions for children with autism spectrum disorder (ASD). 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). Compared with white children with autism, Latino children are diagnosed at a later age and receive poorer quality of care (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 in order to meet the needs of Latino children with ASD.

Objectives: 1) To examine the experiences and barriers of Latino families seeking an ASD diagnosis and accessing services for their children. 2) Get parents’ feedback and opinions to inform and develop a pilot intervention for under-resourced communities.

Methods: Participants were 12 Spanish speaking parents [m_age (SD) = 37.9 (5.2), n = 11 females] who participated in two focus groups and three interviews in two sites in California. Participants were recruited via direct referral from regional centers and non-profit organizations. All interviews and focus groups were led by a Spanish-speaker moderator, audio-recorded, and transcribed in Spanish. A senior member of the research team open-coded transcripts to develop a code book, and Spanish-language coders verified the relevance of these codes to the Spanish language transcripts. Inter-coder reliability reached 60% (Cohen’s kappa) and remaining disagreements were resolved via consensus. Demographic data were also collected pertaining to the family’s education and income, and the child’s age of diagnosis and school placement.

Results: Three main themes emerged through analysis: 1) Logistic Barriers (“Nos traen como pelotita [rebotando]”): Most parents reported bouncing back and forth between doctors, providers, and regional centers while seeking a diagnosis and services for their children. Parents also reported being redirected or rejected by service agencies due to lack of health insurance. 2) Cultural Differences (“Buscando las palabras correctas en español”): All parents commented about language difficulties when working with providers. Challenges included difficulties understanding Spanish translators as well as advocating and securing services for their children effectively. 3) Lack of Knowledge (“No sé qué es”): the majority of parents commented about their lack of knowledge related to the causes, signs, and treatments for ASD, wondering if the etiology of ASD could be attributed to a mental disorder and remaining uncertain on how to navigate the process for service initiation.

Conclusions: The findings of this study suggest that Latino families faced different barriers in receiving a diagnostic and treatment services for their children with ASD. Specifically logistic factors, cultural differences, and lack of knowledge acted as prominent barriers that hindered Latino parents’ attempts to access services. Future research should examine ways to address the identified obstacles, and tailor interventions to be culturally relevant for under-resourced Latino families who must navigate large, bureaucratic systems of care.