The meaning of ASD for teenagers negotiating identity

What is it about?

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.

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Why is it important?

In the past two decades autism has increasingly been defined as a social problem. During this time a growing number of children and young people have been diagnosed with one of a range of autism spectrum disorders. The implications of the diagnostic process and the labelling that accompanies it have received little attention in the literature in terms of what it means in the lives and experiences of the children and young people who receive a diagnosis of autism. The experiences reported by the young people in this study, of being diagnosed with autism, inform us of the way in which being labelled with these diagnoses can impact on children and young people. These findings illustrate that knowledge from those who live with the diagnosis can add to and also challenge dominant understandings about young people with a diagnosis of autism. In particular, it adds knowledge in highlighting the significance of structural factors embedded in social policies and the practices associated with them.