Health Care Disparities and Autism: Analytic Approaches to Understanding Families’ Experiences in Their Everyday Lives

SIGNIFICANCE: Health care disparities have been an enduring concern of occupational science as well as occupational therapy research and practice. On the basis of a National Institute of Mental Health (NIMH)–funded ethnographic study—Autism in Urban Context: Linking Heterogeneity With Health and Service Disparities (R01MH089474)—this short course provides a methodologically and conceptually rigorous perspective on health care disparities experienced by African American and Latino children with autism and their families. As recommended by the Institute of Medicine, health care disparities were analyzed at the structural and interactional levels.

INNOVATION: In contrast with population-level studies, in this research we examine health care disparities situated around specific problems embedded in the families’ everyday lives. In Study 1, we examine the cultivation of family expertise and collaboration in health care encounters. In Study 2, we consider management of elopement and wandering in an urban context. In Study 3, we investigate Latino families’ experiences of autism diagnoses and services, using a visual timeline method.

We attempted to answer the following research questions: How are the problems of children with autism variously framed by family members and practitioners? What is the influence of these different frames on the diagnosis and services?-

Health care disparities related to autism have been established, but little is known about families’ experiences and challenges that affect acquisition of autism diagnoses and related services.

METHOD: In these studies, we draw on narrative, phenomenological, and interpretive approaches to carry out rigorous analyses both within and across cases. Data collection involved narratively based interviews; participant observation in the home, school, clinic, and community; field notes; and document reviews. In Studies 1 and 2, we drew on the Autism in Urban Context database that documents the experiences of 23 African American families of 25 children with autism who were 8 yr of age or younger at recruitment. Sixty-five professionals including physicians, occupational therapists, and other professionals also participated. In Study 3, we applied the Autism in Urban Context methodology to document 12 Latino families’ experiences of their children’s autism diagnosis and services. The settings were home, school, clinic, and community contexts in Los Angeles County, California. Microlevel interactional, discourse, and narrative analyses were carried out to identify patterns within and across cases at structural and interactional levels.

RESULTS: In Study 1, the predominant themes related to expertise were negotiations within health care encounters, bridging with family life contexts, and the cultivation and reinterpretation of expertise as developmental needs and agendas changed over time. In Study 2, we found that management of elopement and wandering reside solely within the family, as health care and autism service systems are reticent to claim responsibility for this problem. In Study 3, visual timeline representations of narrated events capturing children’s development, diagnosis, and services reveal opportunities for and challenges to partnerships among parents and practitioners.

CONCLUSIONS: Research results are presented as exemplars of how theoretically grounded, methodologically rigorous observations of families’ everyday lives contribute to the understanding of health care disparities that inform occupational therapy practice and occupational science research.