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An Autoethnography of Parenting a Daughter whose Complex Disability was Diagnosed in her Adulthood

Alcock J

This autoethnography explores my journey as a mother of a woman with intellectual disabilities whose complex needs and behaviour has presented significant challenges to services. My biographical accounts include the experiences of receiving my daughter’s diagnoses of a rare chromosome disorder and autism in her adulthood. The former allowed a unique story which emerged from phenomena that is being swept in by the tide of the technological revolution in the detection of gene mutations and structural genomic variations causing learning disability. Within the theoretical frameworks of critical disability studies, social constructionism and family systems approaches, I weave 31 years of autobiographical accounts with cultural and structural factors that influence the experiences of parents of children with learning disabilities. Included in the investigations were the uncovering of new knowledge about the culture of intellectual disability and an examination of the events leading up to my daughter’s four-year incarceration in an institution. Evidence of oppressive, dehumanising social policies and practices intersect with new themes, including the journey from asking ‘why?’ to knowing, and chasing new ‘fixes’ to the liberating possibilities of policy changes and transformative validation.