Drawing a line in the sand: Autism diagnosis as social process

Abstract

This PhD explored how clinicians make diagnostic decisions about autism in secondary care. Symptoms of autism are considered to be widely heterogeneous, meaning that decisions about where the diagnostic threshold lies can be challenging. Diagnosis in the UK is usually undertaken by multi-disciplinary teams (MDTs) and can involve numerous stages of decision-making in different contexts across an extended time period. The process of diagnosis is complex and multi-faceted, and can be particularly challenging when cases are considered ‘borderline’ or where there are coexisting conditions. A qualitative approach was used in four studies. A narrative review of twenty-one clinical guidelines was conducted (study one); observation of eighteen assessment team meetings on four sites was undertaken (studies two and three); and sixteen interviews were conducted with clinicians engaged in autism diagnosis (study four). The narrative review found that guidelines varied in recommendations for assessment procedures and provided no guidance as to how MDT meetings should be facilitated. Guidelines highlighted utilising clinical judgement, valuing experience and dealing with contradiction and uncertainty. A thematic analysis of observation data found that clinicians produce objective accounts through their situated practices and perform diagnosis as an act of interpretation, affect and evaluation to meet the institutional demands of the diagnostic setting. A discursive psychology analysis explored interaction in the team meetings and found a four-part narrative structure utilised to account for and explain potential contradictory evidence and manage uncertainty. A preliminary thematic analysis of the interview study found that clinicians value working collectively to enable them to feel confident about difficult decisions. Clinicians appear to be engaged in a ‘push/pull relationship’ with diagnostic decision-making which involves resisting or accepting patient and family wishes; working within time and resource constraints; and consideration of the potential positive and negative consequences of the diagnosis. This PhD offers an empirical contribution to the nature of practical uncertainty work in healthcare. Diagnosticians are charged with the burden of uncertainty in autism diagnosis, and find strategies to manage this dilemma to find the best outcomes for their patients. Uncertainty is readily displayed in inter-clinician discussion, however, clinicians are compelled to deliver a clear and certain diagnostic outcome for patients, families and other professionals. The result of this translation from uncertainty to certainty is the construction of a condition whereby it is possible to be both part of a spectrum as well as categorically defined. Overall, this PhD contributes to a growing field of scholarship on autism diagnosis and provides insight into our understanding of diagnosis as a social process.