Latino Parents of Children with Autism: Understanding How Innovative Mobile Technology Can Increase Access to Care

Background: Latino parents of children with autism spectrum disorder (ASD) face unique challenges obtaining diagnosis, treatment, and access to autism services. Current literature lacks evidence on how low socioeconomic status (SES) Latino parents navigate autism services and use mobile internet technology to seek such services (Hispanic Pew Research & Fryer 2002). Crilly et al., (2011) found that many under-resourced populations have lower access to the internet on a computer, but have a higher mobile internet usage. Latinos, in particular, use their phones to access the Internet at higher magnitudes compared to other race/ethnic groups including non-Latino Whites (NLW) (Lopez et al., 2013).

Objectives: To understand Latino parents’ perceptions of barriers to a diagnosis and treatment of ASD in low SES Latino populations. Moreover, the study aims to explore how Latino parents use mobile technology to access autism-related care.

Methods: IRB approval was obtained to interview 21 self-identified English- and Spanish-speaking Latino parents of children with ASD and 3 key informants (community leaders). Criteria for study participation included residency in Los Angeles County, being of Latin American descent, of low SES, as defined by the U.S. Federal Poverty Guidelines, and a parent of a child between the ages of 2 and 10 years with a professional diagnosis of ASD. Key informants were eligible if they worked with low-income, Latino parents of children with autism. Focus groups and interviews were conducted utilizing open-ended prompts to elicit discussion. Interviews and focus groups were audio-recorded, transcribed verbatim, and independently coded for major conceptual models. Exploratory, qualitative analyses were conducted using a modified grounded theory approach. Six raters coded each transcript to ensure reliability. Data triangulation and methodology triangulation were employed to ensure validity and reliability of data interpretation.

Results: Lack of information and language barriers emerged as major barriers in accessing autism-related services in low-income Latino families. Participants reported a need for culturally sensitive delivery of information. Heavy use of cellular phones to access Facebook and Google in order to connect with other parents and find autism-related information emerged as major solutions that these parents found to be feasible. Participants also expressed disappointment over the lack of support from institutions to access school-based and health services for their children. Despite these challenges, parents reported accessing the internet to inform themselves about broad topics related to autism (e.g., understanding autism, laws protecting children with disabilities). Cell phones and tablets were the primary source of online access. Lastly, English and Spanish speaking parents differed in their methods of evaluating the validity of online information. Such as verifying the information with other parents versus confirming the author’s credentials. Learning how to trust online sources was also a major concern for parents.

Conclusions: These findings suggested that more parents are using their phones to inform themselves about their child’s diagnosis and access resources. Understanding how Latino parents navigate autism services for their children may facilitate the creation of novel tools to make information and services more accessible to this population.