How should health services adapt to meet the needs of autistic people with gender dysphoria?

Student thesis: Doctoral ThesisPhD

Abstract

Transgender is a term used to describe people with gender identities which are different to their birth sex. Gender dysphoria is a term which describes a subset of transgender people who experience distress in relation to the incongruence between their sex and gender. The National Health Service (NHS) provides Gender Identity Clinics which offer treatment to this group. Between 5-26% of people accessing gender clinics are autistic. Autism is a life-long developmental condition defined by atypical social communication and repetitive behaviours, interests, or activities. As the rate of autism in the general population is 1%, autistic people are significantly over-represented in gender clinics. However, there is little research about the lived experience of gender dysphoria in autism to guide clinical decision making for this patient group. Since autism is a developmental condition, and gender dysphoria typically onsets by puberty, it is important to consider gender dysphoria in autistic people across the lifespan. Furthermore, parents of autistic young people, and clinicians working with autistic adults and young people with gender dysphoria, play important roles in the treatment decision-making process, and so it is necessary to understand their perspectives. The overall aim of this PhD thesis was to understand the lived experiences of autistic people with gender dysphoria, and of accessing NHS support for gender dysphoria.
In order to achieve this aim, a series of qualitative studies were conducted. Chapters One and Two describe the background literature and methods. In Chapter Three, a systematic review and meta-synthesis was conducted about the lived experience of gender dysphoria in adults. In Chapter Four, an interpretative phenomenological analysis (IPA) study was conducted with autistic adults, investigating the lived experience of gender dysphoria and of accessing healthcare. In Chapter Five, an IPA study asked the same questions of autistic young people aged 13-17 years old, and their parents. Chapter Six was an IPA study with NHS clinicians who work with autistic adults and young people who experience gender dysphoria, to better understand their perspectives on the co-occurrence of autism and gender dysphoria, and how they adapt their practice when working with this group. Chapter Seven was a multi-perspective synthesis of the previous three studies to compare the perspectives of all participant groups. Chapter Eight is a general discussion of the findings.
Date of Award27 Apr 2022
Original languageEnglish
Awarding Institution
  • University of Bath
SupervisorAilsa Russell (Supervisor), Catherine Butler (Supervisor) & William Mandy (Supervisor)

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