The role of a diagnosis of an Autism Spectrum Condition in identity.
Research type
Research Study
Full title
How do people understand the role that a diagnosis of an Autism Spectrum Condition plays in their identity?
IRAS ID
140299
Contact name
Claire King
Contact email
Sponsor organisation
University of Surrey
Research summary
Autistic spectrum conditions are a group of neurodevelopmental conditions thought to affect approximately 1 in 160 people globally (Elsabbagh et al 2012). autism spectrum conditions are characterised by impairments in social communication, social interaction and social imagination.
Whilst there is a plethora of research on the experience of parents receiving and coming to terms with a diagnosis of an autism spectrum condition for their child, the experience of the person receiving the diagnosis is less well researched. The research available has highlighted a number of issues for the person receiving a diagnosis of autism spectrum condition, such as negative experiences of services before and during diagnosis and experiences of discrimination and bullying. A sense of knowing that one is different from other people is a common theme through the research, and in exploring how people react to a diagnosis of an autism spectrum condition Punshon et al (2009) found that individual’s sense of their identity was affected by their own and other people’s beliefs about this difference. Receiving a diagnosis of an autism spectrum condition allowed some people in their study to make sense of this experience of difference.
It is this aspect of receiving a diagnosis of an autism spectrum condition that the current research will focus on, interviewing adults who received a diagnosis of an autism spectrum condition in adulthood with the aim to explore their understanding of their autism spectrum condition and how this understanding was constructed in the absence of a formal diagnosis, and then how the diagnosis was incorporated in ones existing sense of identity. It is hoped that this research will add to the existing literature on identity formation and inform current thinking about the process of assessment and diagnosis of autism spectrum conditions and the psychological support required following diagnosis.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
14/WM/1095
Date of REC Opinion
14 Aug 2014
REC opinion
Favourable Opinion