Umagami, Kana; (2023) Towards a better understanding of loneliness in autistic adults: examining measurement tools and lived experiences. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Loneliness is a universal feeling that people might feel when there is a gap between the ideal and actual states of their social relationships. Historically, it has been thought that autistic people do not have a desire for social connection and instead show a preference for aloneness. However, recent research, coupled with first-hand accounts of autistic individuals, has shown that not only do autistic people experience loneliness, but they may be particularly vulnerable to it (e.g., due to the challenges they experience in social environments and/or due to a lack of supportive environments in which to cultivate social relationships). To date, there has been limited research on loneliness in autistic adults. In this thesis, I used both quantitative and qualitative methods to further our current understanding of loneliness in autistic adults, with a focus on examining the measures used to assess loneliness in autistic adults, as well as autistic people’s lived experiences of loneliness. In Chapter One, I introduce my motivation for this research as a neurodivergent individual and provide an overview of research into both autism and loneliness. In Chapter Two, I use a systematic review to synthesise the current evidence base on loneliness in autistic adults, and to identify gaps in research that can guide subsequent work. In Chapter Three, I use mixed-methods to examine if, and how accurately, existing measures of loneliness capture the experiences of autistic adults. In Chapter Four, I use qualitative methods to explore the unique experience of loneliness in autistic adults. In Chapter Five, I use mixed- methods to investigate experiences of loneliness in autistic adults before, and during the early stages of, the COVID-19 pandemic. In Chapter Six, I discuss the contributions of my research to knowledge on autistic adults’ experiences of loneliness, outline future directions for such work, highlight the strengths and limitations of my research, and present my personal reflections.

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