Essays in the sociology of autism diagnosis

Abstract

My dissertation examines the social and organizational processes that influence the diagnosis of autism spectrum disorder (ASD). The diagnosis of ASD, as a research setting, presents a number of empirical puzzles which I investigate using organizational, economic and medical sociology and which generate theoretical insights with broad applicability to the management of organizations. Two sets of analyses are included. The first analysis is motivated by sharp differences in diagnostic rates across three specialized ASD clinics at Allied Health (pseudonym), a large health maintenance organization in the United States. I show that this difference is stable over time and cannot be explained by patient and pediatrician characteristics. Leveraging observation and interview data at each of the clinics, I characterize different approaches to diagnosis at each clinic, which originated in the training conditions of the initial clinic directors. These findings support developments to theory that explain how field-level changes typically expected to lead to adaptation and isomorphism can be moderated unintentionally by prior locally-institutionalized practices and result in stable practice variation. The second analysis examines the role of patients in medical diagnosis. Patients are increasingly taking an active role in medical decision making and exerting subtle influence on the decisions of their health care providers. While a greater balance of power and knowledge between patient and provider can be beneficial in many ways, there is a risk that the shifting balance may fail to leverage the subject-matter expertise of medical professionals. With the goal of better characterizing the influence of patients, I draw on data from two systems of care - Kaiser Permanente Northern California and the California Department of Developmental Service - to examine the role of patients in the diagnosis of ASD. Findings are consistent with prior research in identifying patient influence, but illustrate several new boundary conditions: (a) assertive and influential patients may represent only a fraction of the total population and (b) the magnitude of a patient's impact varies by the knowledge and role of the health care provider, and by institutional arrangements that create particular incentives.