How autism is represented: shaping understanding and services

Academic: Professor S. Murray, Faculty of Arts

University of Leeds insight into how autism is represented in culture is stimulating national public discussions, shaping local health services and inspiring new artistic approaches.

From concerns about an ‘autism epidemic’ to the MMR vaccine crisis, the contemporary media is fascinated by autism. Although discussion of the condition has been wide-ranging within medicine, psychiatry, psychology, and education, there had been no study devoted to how autism is powerfully depicted in modern culture.

Leeds took the original approach of analysing how autism is constructed in contemporary society and culture through its representation in narrative forms, from medical texts to fiction (e.g. The Curious Incident of the Dog in the Night-time) and film (e.g. Rain Man). The research articulated the new concept of an ‘autistic presence’, based on the idea that the person with autism should be kept central and not marginalised or reduced to metaphor as this can give rise to inaccurate stereotypes.

Moulding service provision

The Leeds Autism Diagnostic Services (LADS) secured funding in 2011 by using the Leeds research to argue for a holistic, and not simply clinical, approach to autism. Leeds directly improved the experience of autistic service users by making hands-on contributions to LADS like improving the language used in communications, revising diagnostic procedures, etc.

Leeds has worked with the NHS on events exploring connections between the arts, mental health and wellbeing, including a theatre performance and discussion at the LoveArts Festival. This led to Leeds co-delivering accredited training in Leeds and York with the NHS in 2013, which challenged clinical staff and healthcare practitioners to think more broadly.

Determining the shape and content of public debates

Leeds led a session at a 2008 international conference, organised by the National Autism Society and attended by professionals and people living with autism. In 2009 Leeds shaped a discussion on autism at a festival of debate organised by the Institute of Ideas (a UK think tank) and attended by policy-makers, academics and the public. In 2012 Leeds addressed a British Academy conference marking World Autism Day.

Inspiring new approaches to artistic representation

Inspired by the concept of an ‘autistic presence’, Opera North (a national opera company) has commissioned an opera based on autistic experience.  This radically new work is expected to premier in 2015.

Working with Leeds, developing this holistic approach, means we are getting it right. Feedback has been very positive, especially from service users who have said ‘no one ever understood us before’.

LADS Clinical Lead
Funder: University of Leeds