Do you know I have Asperger's syndrome? Risks of a non-obvious disability

Abstract

In this paper the risks of having a non-obvious disability, Asperger's syndrome [AS], are explored. The key focus is the riskiness associated with being on the margins of normality, where personal experience (and theoretical concepts) of being ‘different’ and ‘normal’ merge. When labelling people in any way other than normal is unpopular, those on such margins remain at risk of being misunderstood and neglected. With AS there continues to be controversy over the diagnostic label, as well as a theoretical tension between the negative versus positive effects of applying such a diagnosis. The basis for this discussion is the findings of a qualitative study exploring the experiences of young adults with AS and those of their parents. Methods used include purposive sampling, unstructured interviews and constant comparative analysis – whereby analysis became organised around the core emergent category of ‘not quite fitting’ – and the kinds of risk associated with the subjectively felt experience, the perception on the part of others that behaviour is somehow curious or unusual. These risks are categorised into everyday and longer term risks. This paper also discusses comparable risks for other people who are marginally different whether as a result of disability, mental health problems or simply personality.

Keywords:

• Asperger's syndrome
• autism
• mental health
• disability
• risk
• qualitative research
• labelling
• marginality