Social-cultural perspectives on diagnosis: autism as a case study

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Diagnosis is commonly understood to be a medical process that matches symptoms to disease, disorder or illness. To be effective, diagnosis requires cut-off points, or thresholds, whereby individuals can be identified as ill or well, diseased or healthy, disabled or not. Medical sociologists have challenged the taken-for-granted fit of diagnostic categories to their conditions and instead consider them as socially framed and shaped by wider social forces and interaction (Brown, 1995; Jutel, 2011). Diagnosis, therefore, whilst generally considered to be a medical or clinical activity, cannot be separated from wider influences of human agency and deliberation (Jutel, 2011). Whilst clinicians are, for the most part, responsible for diagnosis and for the labelling of a condition as one thing or another, the process of diagnosis itself is an interaction. People coming for diagnosis are often experts in their own behaviours; cultural and medical understandings of a particular condition merge as lay people shape how that condition is seen in the popular imagination, and clinicians find ways to categorise symptoms one way or another. Diagnosis itself, and how patients and families interpret the diagnosis, creates meaning around disease and disorder, as well as providing a mechanism for managing that disorder. The ESRC Fellowship will explore how clinicians make diagnostic decisions about autism in secondary care and consider patients' understanding of the diagnostic decision and impact on their families. Autism is diagnosed when there are persistent patterns of difficulty in social communication and social interaction, combined with restricted and repetitive patterns of behaviour, interests or activities (APA, 2013). Symptoms of autism are considered to be diverse and wide-ranging in severity, meaning that decisions about where the diagnostic threshold lies can be challenging. Prevalence rates for autism have increased dramatically in recent years from just over 1 in 2000 in 1966 (Lotter, 1966) to about 1.1% to 1.2% of the population (Brugha et al., 2012; Sadler et al., 2017). Despite neuroscientific advances and significant genetic research, we still do not understand the underlying causes of autism, and the condition cannot yet be diagnosed by any clear biomarker such as a blood, urine or genetic test (Klin et al., 2000; Vllasaliu et al., 2016). These factors make autism an interesting case study for the examination of diagnosis more broadly.I am interested in where clinicians draw the line between 'normality' and 'pathology' and what that means for patients and families. Whilst my PhD studies have focussed on clinical decision-making, the proposed ESRC Fellowship will extend the findings into lay perspectives on diagnosis more generally. This will help me to engage in key areas of interest in co-production and participant involvement in healthcare research as well as disseminate my research to people who might not otherwise access it. There are two main aims of my proposed Fellowship: a) to enable me to deliver high impact outputs based on my PhD research; and b) to develop initiatives which build a bridge between my PhD research study and my future research career. a) I intend to consolidate the results of my PhD studies, and find ways to disseminate them to a broad audience. This will include writing articles for academic journals; facilitating knowledge-exchange workshops with clinicians and patients; and shaping creative non-academic outputs which will include a short animated film and an online article. b) I intend to engage in networking and professional development which will help to provide a bridge between my PhD and future research career. The core of this aim will be to write an application to the Wellcome Trust for a three-year Fellowship. In addition, I will present my research at conferences; engage in networking within my own research departments and further afield; and undertake appropriate training.