Living without a diagnosis – formations of pre-diagnostic identity in the lives of AS people diagnosed in adulthood

Abstract

Asperger Syndrome (AS) is currently understood as a neurodevelopmental condition associated with difficulties in social communication, social interaction, and social imagination. Many AS people also experience differences in sensory sensitivities and perceptions of the surrounding world. Most diagnoses are now made in childhood; however, there remain a number of people who are diagnosed in adulthood. Within this group, there are also a number who, born before 1980, grew up in an era before the condition had been identified and diagnosed, and therefore spent a substantial part of their lives living either without a diagnosis or with an incorrect diagnosis. This is an under-researched group, whose pre-diagnostic experiences have thus far not been subject to detailed investigation, and as such are often poorly or inconsistently understood both academically and by service providers. The primary aim of the thesis is to explore their experiences by addressing the following three questions:

1. How do AS people understand their dispositional selves in the pre-diagnostic phase of life?
2. How do self-other relations affect pre-diagnostic understandings of self?
3. How does management of everyday insecurities relate to formations of the pre-diagnostic self?

These questions will be explored through comparative analysis of seven autobiographies, authored by AS people who were diagnosed in adulthood. The analysis is informed by a neo-Bourdieusian approach to identity through which I develop an account of relations between authenticity (one’s ability to experience dispositionally appropriate ways of being), accountability (referring to the social and cultural conditions of exchange with others) and legitimacy (the experience of one’s ways of being as valid) as a way of framing some of the issues faced by AS adults in pre-diagnostic life in relation to the themes above. I suggest that this framework can offer a useful perspective on pre-diagnostic issues by drawing attention to the interrelation of dispositional and social circumstances in shaping individual life experiences.

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Identifiers

ORCID for Michael Bracher: orcid.org/0000-0001-5861-2657

ORCID for Pauline Leonard: orcid.org/0000-0002-8112-0631

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