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Growing older with autism: A qualitative study

Hickey, A; (2015) Growing older with autism: A qualitative study. Doctoral thesis , UCL (University College London). Green open access

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Abstract

Aim: Originally conceptualised as a disorder of infancy or early childhood and with relatively recent recognition of the lifelong nature of autism, research on getting older with the disorder is very limited. This study contributes to this nascent literature by exploring the experiences of older people with autism. Method: The study was qualitative in approach. Thirteen older people with autism participated in semi-structured interviews about their experiences of diagnosis, loneliness and getting older. Interview data were analysed using thematic analysis. Quantitative measures of mood and loneliness were also completed to further contextualise experiences. Results: Experiences of older people with autism were characterised by longing for connection, isolation and loneliness. Prior to diagnosis individuals had some awareness of difficulties, attributed to intrinsic differentness, and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby negative past experiences could be reattributed to autism as opposed to the self. Autism-specific support and social groups were highly valued, offering opportunities for belonging, acceptance and safety. Conclusions: Growing older with autism was generally experienced as difficult and lonely. Individuals continued to experience substantial social challenges throughout adulthood and made considerable efforts to ameliorate these difficulties. Diagnosis offered a new framework for understanding difficult past experiences. These results highlight the need for greater support for this population with respect to reducing loneliness and improving access to diagnosis.

Type: Thesis (Doctoral)
Title: Growing older with autism: A qualitative study
Open access status: An open access version is available from UCL Discovery
Language: English
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/1471541
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