The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis

Kate Cooper, William Mandy, Catherine Butler, Ailsa Russell

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Abstract

Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about this incongruence or gender dysphoria. Few studies have aimed to understand the inner experiences of this group. In this study, we used Interpretive Phenomenological Analysis to understand the lived experience of gender dysphoria. Twenty-one autistic adults were interviewed about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. The interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Participants described significant distress because their bodies did not match their gender identities, their need to understand their identities more broadly and to manage complex intersecting needs. Participants experienced distress due to living in a world which is not always accepting of gender- and neuro-diversity. Participants described barriers in accessing healthcare for their gender needs. Some participants felt being autistic had facilitated their understanding of their gender identity. Other participants described challenges such as a tension between their need to undergo a physical gender transition versus a need for sameness and routine. In conclusion, there can be both positive experiences and additional challenges for autistic transgender people. Lay Abstract: Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about their gender and sex assigned at birth not matching which is called gender dysphoria. Research has focused on finding out why autistic people are more likely to have gender dysphoria, and less on what the experience of gender dysphoria is like for autistic people. We interviewed 21 autistic adults about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. We carefully read the transcripts of the interviews, focusing on how participants understood their experiences. We found a range of themes from the interviews. Participants were distressed because their bodies did not match their gender identities. Participants told us they had to work hard to understand themselves and who they were, and to manage having multiple different needs such as mental health needs. It was upsetting for participants to experience discrimination because of being autistic and/or transgender. Some participants said it was more difficult to get transgender healthcare as an autistic person. Some participants thought being autistic had helped them understand their gender identity more than non-autistic people. Other participants found it was challenging to be both autistic and transgender. For example, most participants wanted to change their bodies to match their gender identity, but some participants were nervous about making changes to themselves and their routine due to being autistic. We conclude that autism can in some ways be helpful and other ways contribute to challenges for transgender autistic people.

Original languageEnglish
JournalAutism
DOIs
Publication statusPublished - 19 Jul 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: Kate Cooper is funded by a National Institute for Health Research Clinical Doctoral Research Fellowship for this research project (ICA-CDRF-2018-04-ST2-047).

Publisher Copyright:
© The Author(s) 2021.

Keywords

  • autism spectrum disorders
  • gender diversity
  • gender dysphoria
  • transgender healthcare
  • transgender identities

ASJC Scopus subject areas

  • Developmental and Educational Psychology

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