The meaning of a label for teenagers negotiating identity: Experiences with autism spectrum disorder

Abstract

There is a lack of consideration for the effects that labels such as autism, and the associated diagnostic processes, have on the children to whom they are applied. In this article we present research conducted with five teenagers diagnosed with autism. Through a collaborative, participatory research approach, these teenagers shared their experiences of their diagnosis using communication methods of their choice. The young people's accounts illustrate the understandings they had of autism. Important findings from the research illustrate how the participants integrated this knowledge with their sense of self, how they negotiated issues of identity and the meanings that feeling 'different' had for them. Whether the diagnosis was experienced as advantage or disadvantage by the young people depended on the extent to which it facilitated knowledge and control. The article concludes with a discussion of the significance a diagnosis may have for the ways in which children and young people construct their personal identity and their social relations, and in terms of negotiating control in their lives. We suggest that ways of minimising stigma and marginalisation associated with a diagnosis of autism need to be considered at a policy level.