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104 Diagnostic culture and the sociology of diagnosis panel: autism as our case study
  1. Ginny Russell1,
  2. Rhiannon Lane2,
  3. Ammemarie Jutel3,
  4. Svend Brinkman4,
  5. Alexandra Brandt Ryborg Jønsson5
  1. 1University of Exeter, Exeter, UK
  2. 2University of Cardiff, Cardiff, UK
  3. 3Victoria University of Wellington, Wellington, New Zealand
  4. 4Aalborg University, Aalborg, Denmark
  5. 5University of Copenhagen, Copenhagen, Denmark

Abstract

The case of increasing diagnosis of autism illustrates both the grip of ‘diagnostic culture’ on our society, and the ‘sociology of diagnosis’. This is an emerging sub-field in sociology which draws attention to diagnosis as a site of medical authority, power and organisation. The sociological view is that diagnosis is not a simple label for a physical, objective condition, rather, it is a social agreement about pathology which involves multiple actors and has enduring social consequences.

This panellists are sociologists and psychologists from Europe and Australasia. They will speak about diagnosis as a social phenomenon, and how, in particular, increasing rates of Autism, which will be evidenced, are not just a reflection of social changes, but prompt new frames of understanding. This panel will be a 60-90 minute session facilitated by Alexandra Raj from the University of Copenhagen (TBC). The event will be in-person.

In this panel session, four speakers will discuss diagnosis as a social phenomenon, revealing the drivers of increased diagnosis, its social functions, consequences and constraints of diagnosis, with the first speakers describing his theory of diagnostic cultures, the second and third using autism as a case study, and the final speaker considering diagnosis more broadly as a historical phenomenon.

Chair Alexandra Brandt Ryborg Jønsson

1. Svend Brinkmann will show studies estimate that each year, around a quarter of the population of Western countries will suffer from at least one mental disorder. Should this be interpreted as evidence for the progress of psychiatry, a discipline that is now able to identify and treat mental illnesses that have always existed, or might it be the case that modern life somehow creates new conditions, or social pathologies? Svend will argue that in fact something more fundamental has been taking place in recent years: the development of diagnostic cultures. Svend will ask whether, in transforming existential, moral and political concerns into individual psychiatric disorders, we risk losing sight of the larger historical and social forces that affect our lives.

2. Ginny Russell will present a case study- autism in the UK. Her epidemiological work from the UK establishes an exponential increase in reported diagnosis of autism. Taken from primary care data covering 9 million patients in the UK over a 20 year period, the increased diagnosis is steeper in females, and adults and individuals who have less severe traits, suggesting this is an artefact of increased diagnosis and reporting rather than an increase in autism per se. Autistic traits are normally distributed in the population hence there are more people with less severe traits nearer the population mean. As individual with less severe autistic traits are now diagnosed, they contribute to mass de-stigmatisation and feedback loops, with autism diagnosis providing a useful explanatory function for deviance.

3. Rhiannon Lane will discuss the way in which tendencies to positively identify with the diagnosis of autism can be usefully understood through the lens of ‘strategic essentialism’, which describes how groups may actively embrace a commonly stigmatised social identity category, actively emphasising their difference to others in a way which promotes within-group cohesiveness and a positive sense of identity. This tendency has been particularly prevalent in autism, which has had a strong history of service-user advocacy and activism. Drawing upon her doctoral work, she will illustrate how such essentialising tendencies can contribute to diagnostic expansion through promotion of the diagnosis but can simultaneously act as a resisting force against diagnostic expansion and over-diagnosis, through the standardisation of the diagnosis which is necessary for this promotion to occur.

4. Annemarie Jutel will take a wider historical and sociological position through discussion of how medicine’s own reliance on diagnosis as a way of differentiating itself from other professions contributes to the problem of over diagnosis. She will reveal how the successful emergence of nineteenth century scientific medicine hinged on demonstrating the superiority of diagnosis over the approaches of competing alternative healers and dispensaries. She will underline how the value that medicine assigned to diagnosis, and then promoted to the broader public is at the heart of overdiagnosis today. She will show how the coat-tails of medicine are of its own tailoring and ponder how it might moderate its messages about diagnosis to dilute its overuse.

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