Davidson Autism paper Contours Workshop.doc

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Joyce Davidson Draft only “More labels than a jam jar…” The Gendered Dynamics of Diagnosis for Girls and Women with Autism Draft only Joyce Davidson Department of Geography Mackintosh-Corry Hall Queen's University Kingston, Ontario Canada, K7L 3N6 Email – [email protected] 1
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Joyce Davidson Draft only “More labels than a jam jar…” The Gendered Dynamics of Diagnosis for Girls and Women with Autism 1 Abstract The term autism, coined by Bleuler in 1911, derives from the Greek autos (meaning ‘self’) – it connotes separation, aloneness - and descriptions of those diagnosed with Autistic Spectrum Disorders (ASDs) frequently suggest they are very much apart from the shared, experientially common space of others. The subjects of clinical literature are very often male children, perhaps unsurprising given the recognized need for early intervention, and the fact that studies suggest four times as many boys receive an ASD diagnosis as girls. This understandable bias does however mean that a significant minority are often overlooked, and this paper focuses on the experience of those girls and women who frequently struggle to obtain diagnosis and treatment for a predominantly male – and thus for them, contested - disorder. Drawing particularly on autobiographical accounts – including the narratives of Temple Grandin, Dawn Prince Hughes and Donna Williams – the paper reveals a strongly felt need to communicate and thus connect their unusual spatial and emotional experience with others, in a manner not typically associated with autism. It explores the gendered dynamics of diagnosis and complex challenges of ASD life-worlds, and the ways in which ASD women use social and spatial strategies to cope with and contest the expectations and reactions of neuro-typical others. 2 Introducing Autistic Experience It is well known that individuals with autism and autistic spectrum disorders (ASDs) experience and express involvement with the world in a way that is not ‘typical’, and published accounts imply such different social and spatial dynamics that they might be 2
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Joyce Davidson Draft only thought to imply an ‘other’ world. The author of a recent text for family and carers writes that ASD individuals “live in a mysterious world of direct perception and immediacy; they see a world without metaphors […and understanding this world] means traveling to a ‘foreign country’ and learning a new language.” (Szatmari 2004: viii) Jacket reviews of the text claim that it takes the reader on “a journey through uncharted terrain”, and such metaphors of exploration highlight a powerful sense of separation between the world of the familiar, the taken-for-granted and everyday, and ASD worlds that, as this author states, “revolve around a different axis” (Szatmari 2004: 16). Szatmari suggests that understanding this alien land requires work of an imaginative as well as explorative nature: he says, “the ASDs are so mysterious, the behaviours seemingly so inexplicable.
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