Theses Doctoral

The Production of Autism Diagnoses within an Institutional Network: Towards a Theory of Diagnosis

Rossi, Natasha Toni

Autism is a neurodevelopmental disorder characterized by impairments in verbal and nonverbal communication and socialization, and behaviors that are restricted and repetitive in nature. As there is no cure, inherent in an autism diagnosis is a high degree of uncertainty, and prognosis is highly dependent on how the child responds to his or her individual treatment. Beginning with the empirical finding that all but two children undergoing assessment at an autism clinic received a diagnosis of the disorder, this dissertation argues for an institutional understanding of diagnosis. Parents and children are processed through a network of agents and organizations which eventually leads to the assignment of the diagnostic label of autism. Diagnosis is not an isolated act; rather, it is a prolonged process that is neither independent of the content of the diagnostic category itself nor its history. Based on participant observation, in-depth interviews and content analysis, I analyze the process through which parents and clinicians arrive at an autism diagnosis. I argue that the interests of parents and clinicians are not pre-conceived, motivational factors that direct their actions, but that their interests are constituted through interaction with the institutional matrix in which they are embedded. Parents do not enter this process wanting ambiguity about their child's potential, they wish for a cure; clinicians do not want to dispense ambiguous diagnoses, but aim at providing definitive prognoses. However, during the diagnostic process, the interests and actions of both are mutually adjusted to, and coordinated with, one another. From their initial interactions with Early Intervention therapists, parents learn how to identify the symptoms of autism in their children. They also learn how to find a physician who can diagnose autism, and how to obtain treatment services. In effect, children become patients-in-waiting, occupying a liminal state between health and disability, and parents enter a race against time to re-train aberrant neural pathways. In diagnostic interviews, clinicians alternate between narrative modes which frame autism as either a real disease, a performance, or a label with which to obtain services. Depending on parents' needs, clinicians switch between these different frames in order to re-translate parents' interests, ushering them from the temporality of cure to that of "one day at a time." Ultimately, I observed that nearly all children received a diagnosis of autism as a result of the clinic's positioning within the institutional funnel. Finally, this study describes the historical use of autism diagnostic instruments as they reveal the looping processes that have altered the autistic prototype as well as the alternating privileged status of parental and clinical expertise over time.



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More About This Work

Academic Units
Thesis Advisors
Eyal, Gil
Ph.D., Columbia University
Published Here
January 10, 2012