Ageing well as an adult on the autism spectrum in Australia: a mixed-methods investigation
Autism spectrum disorder is a neurodevelopmental disorder characterized by social interaction and communication difficulties, and restricted, repetitive patterns of behaviour. Despite being lifelong, research attention has been focused on children and adolescents, resulting in a lack of understanding regarding adulthood and ageing for this population. Meanwhile, demographic trends of population ageing have coincided with increased interest in the concept of ‘ageing well’ in gerontology. However, existing conceptualisations remain exclusive of those with disabilities. This thesis aimed to investigate the health, functioning and participation profiles of autistic adults relative to the general population. It further aimed to explore the concept of ageing well and how it may be applied to autistic adults. Three studies were conducted. The first used health survey data to investigate the proportion of autistic adults meeting criteria for ageing well according to the dominant model in literature, and in doing so examine health, functioning and participation outcomes relative to non-autistic controls. Autistic adults had significantly poorer outcomes that non-autistic controls, with a very small number of autistic adults ageing well according to the model. Second, semi-structured interviews investigated the meaning and experience of ageing well according to autistic adults and carers. Participants believed ageing well was a multifaceted concept including both person- and environmental-level factors. A broader range of factors than are included in existing models of ageing well were believed to be important. A third study involved linkage of health and service datasets to investigate mortality and cause of death for those on the spectrum. Elevated mortality rates and unique profiles of causes of death were found for those on the spectrum relative to the general population. Higher risk of death was associated with the presence of mental and physical health comorbidities. Autistic adults experience poor outcomes relative to the general population. Improving the care of physical and mental health comorbidities in autistic adults will be important for improving these outcomes. Also, existing conceptualisations of ageing well are limited and inappropriate for autistic individuals. Future, more inclusive models should include a range of person and environmental-level factors and a flexible approach to measuring the outcome of ‘ageing well’.
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