The autism diagnostic encounter in action: Using video reflexive ethnography to explore the assessment of autism in the clinical trial

Abstract

Despite the increasing visibility of autism, this disorder has resisted a consistent and stable diagnostic definition, treatment approaches, and biomedical and genetic attempts to make sense of how it manifests within the body. That this confusion remains despite the enormous biosocial productivity of the category indicates that there is likely a unique set of circumstances, an “epistemic murk” (Eyal et al 2014), in which autism exists, and perhaps thrives. Given there is limited understanding of how clinicians diagnose ASD in practice, especially within the diagnostic encounter of the clinical trial, this thesis focuses on the contention and “epistemic murk” that surrounds autism as the object of the clinical trial and the paradoxical attempts by medicine and the psy-sciences to codify, standardise and quantify this heterogeneous disorder. Using a video-reflexive ethnographic (VRE) approach, I observed and videoed 22 diagnostic sessions with parents and children over two years as part of a randomised double blind placebo-controlled drug trial in a children’s hospital in New South Wales, Australia. Edited clips from these videos were later played back to the clinician in reflexive one-on-one feedback sessions with the researcher, allowing the collaborative analysis of complex diagnostic data. This video data provides a rich, negotiated, embodied and socially nuanced picture of the autism diagnostic encounter in action within the clinical trial. In this context, autism is no longer perceived solely as a set of observable behaviours, but rather a disorder that is firmly located within the brain and its processes. ASD medication, the disorder itself, and the individual ASD brain cannot be properly conceptualised without each other, with each element feeding into a classificatory loop. This data also demonstrates how participants must constantly negotiate between the inherently qualitative nature of the diagnosis in practice and the standardised agenda of the clinical trial, which views disorder as a quantitative deviation from a statistical norm. The thesis argues that during the diagnosis, the clinician must filter, categorise and quantify this complex, inter-subjective, experiential knowledge to fit with what counts as measurable evidence. However, it is behind the scenes that the real labour of the clinical trial occurs. This labour generates data through participants’ value-orientation, their experiences, stories, and corporeal translation of knowledge. This diagnostic work is above all complex, value-laden and qualitative.