The social life of health records: Understanding families' experiences of autism

Abstract

Outside of the epidemiological surveillance studies of autism prevalence, health records of children diagnosed with autism have not been sufficiently examined, yet they provide an important lens for showing how autism diagnosis, services and interventions are negotiated, coordinated and choreographed by families and practitioners across multiple settings. This article provides a multifaceted understanding of these processes from an ethnographic and discourse analytic perspective that reveals structural and interactional phenomena contributing to disparities in autism diagnosis and services. We consider health records as dualistic, material-discursive artifacts that are socio-interactionally co-constructed and variably interpreted, contested and utilized across home, school and clinic contexts. We chronicle several families' experiences of their children's autism diagnoses and interventions and describe ways in which health records are socially constructed, curated and placed in the middle of clinical encounters. We show how the parents in our study draw upon health records' material-discursive properties to display epistemic authority, expertise and knowledge in interactions with healthcare and school professionals involved in authorizing and planning their children's care. We describe how the parents experience the health records' clinical portrayals of their children and themselves, and how the parents' portrayals of their children are tacitly ratified or negated in the health records. The data include health record reviews, narrative interviews with parents and practitioners, and clinical observations. These data were collected between October 2009 and August 2012 as part of a larger study on disparities in autism diagnosis, interventions and services experienced by African American children with autism and their families living in Los Angeles County, California. Our analysis reveals the central role of health records in maintaining continuity of an autism diagnosis, interventions and services. This article contributes to enhanced professional awareness, parent-professional partnerships, and equity in the provision of healthcare and human services related to autism.