Day Service Culture From The Perspective Of Autistic Adults With Profound Learning Disabilities: A Methodological Development And Empirical Study In The Space Of Autism And Profound Learning Disability

Redmore, Ned (2021). Day Service Culture From The Perspective Of Autistic Adults With Profound Learning Disabilities: A Methodological Development And Empirical Study In The Space Of Autism And Profound Learning Disability. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.00012a26

Abstract

The primary purpose of this thesis is to explicate day service culture from the perspective of autistic people with profound learning disabilities. This includes their involvement in, and experience of, day service culture. Although other people such as support workers and autistic people without profound learning disabilities are also a significant part of day service culture, their perspectives were not the primary concern of this thesis. A review of the literature on service culture suggested that autistic people with profound learning disabilities shape and experience culture within the context of everyday life at day services, though it also recognised that there was minimal understanding of how to research such a topic. Therefore, a secondary aim was established: to detail a methodological approach that is ethically justified for researching the everyday experiences of autistic people with profound learning disabilities. This aim was initially addressed through a critical examination of what researchers mean when using the terms ‘autism’ and ‘severe/profound learning disability’ in relation to people with complex needs. It concluded that it is both epistemically and ethically unjustified to separate the terms when developing research, as this exacerbates the marginalised position of related people within academic and political domains. Subsequently, an academic space of ‘autism and profound learning disability’ is conceptualised using the phenomenological concept of life-conditions (Kraus, 2015) that recognises the shared material and immaterial circumstances of people with complex needs. A contribution to this space is made: an inclusive, lifeworld fractions approach (Ashworth, 2016) that can enable researchers to adapt studies in line with participants’ perspectives and circumstances. This approach was subsequently used within a research study that addressed the initial aim of the thesis, through an investigation into the culture of a day service for autistic adults from the everyday, lifeworld perspective of ‘Ben’, an autistic adult with profound learning disabilities. The findings show everyday life to be guided by rich spatial and temporal customs that have developed over time through the pursuits and efforts of Ben and his peers. Those traditionally referred to as service users had created a community with rules and values that were congruent with their lifestyles and characters. These findings are indicative of the contributions that autistic people with profound learning disabilities make to the service cultures that they are part of, and demonstrates some of the ways in which they realise autonomy and independence in adulthood.

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