Sorting out autism spectrum disorders: Evidence-based medicine and the complexities of the clinical encounter

Abstract

Autism spectrum disorders (ASDs) present particular problems for diagnosis, encompassing as they do communication difficulties, learning difficulties, social awkwardness, and severe disability, as well as some strengths and special skills (such as perfect pitch or artistic abilities). Hence ASDs have proven difficult to standardise, and evidence-based medicine (EBM) advocates deplore the absence of clean randomised control trial data for different approaches. This study explores the extent to which the drive for standardisation and statistical approaches to clinical medicine influence the ways paediatricians diagnose and treat ASDs. To this end, we interviewed nine paediatricians in private practice using a face-to-face, semistructured approach. Three primary themes emerged from the interview data. First the essentially tacit, experiential nature of diagnosing autism, second the necessity of tinkering with and adapting existing diagnostic tools to particular patients and circumstances, and third, the influence of social constraints on the clinical encounter. This study demonstrates that the process of diagnosis and treatment recommendation involves constant negotiation between clinical experience, the evidence, and the family’s social situation. Furthermore, we find that statistical and EBM approaches are used most often at the margins of the clinical encounter to diagnose outlier patients, rather than the typical patient these approaches claim to describe.

Keywords:

• autism
• evidence-based medicine
• sociology
• diagnosis
• paediatrics
• standardisation
• DSM