Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography

This dissertation research is a 12-month critical ethnographic study of the experiences of 12 bilingual Latino families of children with autism spectrum disorder living in Los Angeles County. Latino children in the United States experience disparities in autism diagnosis and services compared to White children, but little is known about how their families experience these disparities. The purpose of this study is to understand Latino parents’ experiences of their children’s autism services, which include treatments, interventions, and supports. The theoretical framework utilizes narrative phenomenology (Mattingly, 2010), a theory of practice that privileges parents’ emic perspectives, foregrounding the narrative shape and contingent nature of lived experience. Expanding upon narrative phenomenology, this dissertation critically examines discourses that shape parents’ occupational experiences related to their children’s autism services. Situated in a ‘critical moment’ in occupational science (Farias & Laliberte Rudman, 2016), this research views the sociocultural, political economic context that shapes parents’ experiences of their children’s autism services from the perspective of ‘life on the ground.’ ❧ The findings are presented in a ‘three-paper’ dissertation format, such that three distinct analyses are written as standalone, publication-ready manuscripts. The unifying thread throughout the three manuscripts is the work that parents did to obtain, maintain, and manage their children’s autism services, which is conceptualized as an over-arching, multi-faceted occupation of managing autism services. 1) “‘Doing Family’: Disparities, Opportunities, and Capabilities in Latino Families’ Experiences of Their Children’s Autism Services"" utilizes an occupational analysis of family life to understand why Latino parents opted out of state-funded behavioral interventions for their children. A critical analysis revealed that parents opted out not because of a ‘cultural deficit,’ e.g., a lack of understanding of the potential benefits of the intervention, but because of a structural mismatch of services with the family’s occupational needs. The opportunity for behavior therapy did not enable the families’ capability (Sen, 1999) to ‘do family’ in a way that was meaningful to them. The findings show how the concepts of opportunity and capability can support the operationalization of occupational justice. To remedy situations of occupational injustice and reduce service disparities, opportunities, such as access to services, must be delivered in a way that enables individuals and families to convert them into capabilities. 2) “’You Have to Be Ready for Battle’: Latino Parents’ Experiences of their Children’s Autism Services in the Era of Austerity” situates Latino parents’ experiences with systems of care within an ‘autism parent’ discourse in which parents, usually mothers, ‘fight’ systems of care to ‘win’ services for their children. I argue that the ‘autism parent’ discourse is shaped by White, middle- and upper-class resources and capital, and that the discourse obscures the double standard that Latino parents face: They can fight for and possibly ‘win’ services but at great financial, emotional, and social cost; or they can choose not to fight to ensure that professionals will not mistreat their children in retaliation, but not ‘win’ the services they feel their children need and risk being labeled by professionals as unaware of their children’s needs. 3) “School Bus Stories: Understanding Latino Parents’ Concerns about the Safety and Independence of their Children with Autism Spectrum Disorder” examines Latino parents’ experiences related to their children’s public school transportation. Two bus stories, unrelated incidents in which children with autism in the study were ‘lost’ while under the care of their school district transportation departments, are presented as “theoretically critical cases” (Blatter, 2008). The bus stories represent two themes from the broader data corpus: The cost of parents’ broken trust when they feel their children are placed in unsafe situations by school district staff, and the tension parents experienced between their desires for their children’s independence and safety. I critically examine school district professionals’ emphasis on children’s ‘independence,’ which is used to deny their requests for services (e.g., a bus aide to assist the child). Findings reveal the need to address the independence and safety of individuals with autism while taking school or public transportation.