‘Surplus suffering’: differences between organizational understandings of Asperger’s syndrome and those people who claim the ‘disorder’

This paper presents the results of a content, frame and discourse analysis of Internet sites concerned with Asperger’s syndrome (AS). It investigated blogs written by people who have been diagnosed with AS, as well as organizations devoted to the support of people with AS and their families. The findings document the different and even oppositional perspectives of the organizations and the individual bloggers. The organizations’ website descriptions of AS were based on the premise that AS is a medical disorder and a deficit. The individual bloggers, in contrast, called themselves Aspies and indicated that they were happy with themselves but angry and disappointed with those who tried to change them. Theoretical, methodological, substantive and practical implications of these findings are discussed. The concept of ‘surplus suffering’ is suggested as useful.