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Research project on advocacy and autism
Authors:Louise Townson  Sue Macauley  Elizabeth Harkness  Andy Docherty  John Dias  Malcolm Eardley  Rohhss Chapman
Institution:  a The Carlisle People First Research Team, UK
Abstract:This article presents the findings of a qualitative research project about the difficulties in accessing advocacy faced by adults labelled as having autism and Asperger's Syndrome in the Northwest of England. It is also an example of partnership working between three organisations. The article examines both the process of team-led (emancipatory) research and the project findings. Seven main themes emerged throughout the research: late diagnosis and lack of service support; bad experiences with systems of care; feelings of 'not belonging' (identity issues); barriers around communication and sensitivity towards individuals; lack of awareness and access to advocacy and rights; difficulties of 'fitting into' what is already available; and interest in developing knowledge around advocacy. Examination of the main themes pointed to a disturbing link between poor service response, episodes of crisis and mental ill health. The Carlisle People First Research Team is made up of 6 researchers who are labelled as having 'learning difficulties' who work in partnership with one other researcher.
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