Skip to main content
Top
Published in: European Child & Adolescent Psychiatry 9/2023

Open Access 04-04-2022 | Dysthymic Disorder | Original Contribution

The lived experience of gender dysphoria in autistic young people: a phenomenological study with young people and their parents

Authors: Kate Cooper, Catherine Butler, Ailsa Russell, William Mandy

Published in: European Child & Adolescent Psychiatry | Issue 9/2023

Login to get access

Abstract

Gender dysphoria is distress in relation to incongruence between an individual’s gender and sex assigned at birth. Gender clinics offer support for gender dysphoria, and there is a higher prevalence of autism in young people attending such clinics than in the general population. We aimed to investigate the lived experiences of autistic young people who have experienced gender dysphoria, and their parents, using a multi-perspectival IPA design. Young autistic people aged 13–17 years (n = 15), and their parents (n = 16), completed in-depth interviews about the young person’s experience of gender dysphoria. We analysed each individual transcript to generate individual themes, and for each of the dyads, developed themes which acknowledged the similarities and differences in parent–child perspectives. The first superordinate theme was coping with distress which had two subordinate themes; understanding difficult feelings and focus on alleviating distress with external support. This theme described how young people were overwhelmed by negative feelings which they came to understand as being about gender incongruence and looked to alleviate these feelings through a gender transition. The second superordinate theme was working out who I am which had two subordinate themes: the centrality of different identities and needs and thinking about gender. This theme described how young people and their parents focused on different needs; while young people more often focused on their gender-related needs, parents focused on autism-related needs. We conclude that young people and parents may have different perspectives and priorities when it comes to meeting the needs of autistic young people who experience gender dysphoria.
Literature
1.
go back to reference Adams D, Young K (2020) A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in individuals on the autism spectrum. Rev J Autism Dev Disord 8:436–453CrossRef Adams D, Young K (2020) A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in individuals on the autism spectrum. Rev J Autism Dev Disord 8:436–453CrossRef
2.
go back to reference Akgül GY, Ayaz AB, Yildirim B, Fis NP (2018) Autistic traits and executive functions in children and adolescents with gender dysphoria. J Sex Marital Ther 44(7):619–626CrossRefPubMed Akgül GY, Ayaz AB, Yildirim B, Fis NP (2018) Autistic traits and executive functions in children and adolescents with gender dysphoria. J Sex Marital Ther 44(7):619–626CrossRefPubMed
3.
go back to reference American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, 5th edn. Author, Arlington, VACrossRef American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, 5th edn. Author, Arlington, VACrossRef
4.
go back to reference Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG (2015) The epidemiology and global burden of autism spectrum disorders. Psychol Med 45(3):601CrossRefPubMed Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG (2015) The epidemiology and global burden of autism spectrum disorders. Psychol Med 45(3):601CrossRefPubMed
5.
go back to reference Beek TF, Cohen-Kettenis PT, Kreukels BP (2016) Gender incongruence/gender dysphoria and its classification history. Int Rev Psychiatry 28(1):5–12CrossRefPubMed Beek TF, Cohen-Kettenis PT, Kreukels BP (2016) Gender incongruence/gender dysphoria and its classification history. Int Rev Psychiatry 28(1):5–12CrossRefPubMed
6.
go back to reference Burki T (2019) Concerns raised about NHS gender identity service. The Lancet 393(10181):e38CrossRef Burki T (2019) Concerns raised about NHS gender identity service. The Lancet 393(10181):e38CrossRef
7.
go back to reference Butler G, De Graaf N, Wren B, Carmichael P (2018) Assessment and support of children and adolescents with gender dysphoria. Arch Dis Child 103(7):631–636PubMed Butler G, De Graaf N, Wren B, Carmichael P (2018) Assessment and support of children and adolescents with gender dysphoria. Arch Dis Child 103(7):631–636PubMed
8.
go back to reference Chew D, Anderson J, Williams K, May T, Pang K (2018) Hormonal treatment in young people with gender dysphoria: a systematic review. Pediatrics 141(4):e20173742CrossRefPubMed Chew D, Anderson J, Williams K, May T, Pang K (2018) Hormonal treatment in young people with gender dysphoria: a systematic review. Pediatrics 141(4):e20173742CrossRefPubMed
10.
go back to reference Crompton CJ, Ropar D, Evans-Williams CV, Flynn EG, Fletcher-Watson S (2020) Autistic peer-to-peer information transfer is highly effective. Autism 24(7):1704–1712CrossRefPubMedPubMedCentral Crompton CJ, Ropar D, Evans-Williams CV, Flynn EG, Fletcher-Watson S (2020) Autistic peer-to-peer information transfer is highly effective. Autism 24(7):1704–1712CrossRefPubMedPubMedCentral
11.
go back to reference De Vries AL, Noens IL, Cohen-Kettenis PT, van Berckelaer-Onnes IA, Doreleijers TA (2010) Autism spectrum disorders in gender dysphoric children and adolescents. J Autism Dev Disord 40(8):930–936CrossRefPubMedPubMedCentral De Vries AL, Noens IL, Cohen-Kettenis PT, van Berckelaer-Onnes IA, Doreleijers TA (2010) Autism spectrum disorders in gender dysphoric children and adolescents. J Autism Dev Disord 40(8):930–936CrossRefPubMedPubMedCentral
13.
go back to reference Glidden D, Bouman WP, Jones BA, Arcelus J (2016) Gender dysphoria and autism spectrum disorder: a systematic review of the literature. Sex Med Rev 4(1):3–14CrossRefPubMed Glidden D, Bouman WP, Jones BA, Arcelus J (2016) Gender dysphoria and autism spectrum disorder: a systematic review of the literature. Sex Med Rev 4(1):3–14CrossRefPubMed
14.
go back to reference Gordon K, Murin M, Baykaner O, Roughan L, Livermore-Hardy V, Skuse D, Mandy W (2015) A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high-functioning autism spectrum disorder. J Child Psychol Psychiatry 56(4):468–476CrossRefPubMed Gordon K, Murin M, Baykaner O, Roughan L, Livermore-Hardy V, Skuse D, Mandy W (2015) A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high-functioning autism spectrum disorder. J Child Psychol Psychiatry 56(4):468–476CrossRefPubMed
15.
go back to reference Howard K, Katsos N, Gibson J (2019) Using interpretative phenomenological analysis in autism research. Autism 23(7):1871–1876CrossRefPubMed Howard K, Katsos N, Gibson J (2019) Using interpretative phenomenological analysis in autism research. Autism 23(7):1871–1876CrossRefPubMed
16.
go back to reference Humphrey N, Hebron J (2015) Bullying of children and adolescents with autism spectrum conditions: a ‘state of the field’review. Int J Incl Educ 19(8):845–862CrossRef Humphrey N, Hebron J (2015) Bullying of children and adolescents with autism spectrum conditions: a ‘state of the field’review. Int J Incl Educ 19(8):845–862CrossRef
17.
go back to reference Jessen RS, Haraldsen I, Stänicke E (2021) Navigating in the dark: Meta-synthesis of subjective experiences of gender dysphoria amongst transgender and gender non-conforming youth. Social Sci Med 281:114094CrossRef Jessen RS, Haraldsen I, Stänicke E (2021) Navigating in the dark: Meta-synthesis of subjective experiences of gender dysphoria amongst transgender and gender non-conforming youth. Social Sci Med 281:114094CrossRef
18.
go back to reference Kaltiala-Heino R, Sumia M, Työläjärvi M, Lindberg N (2015) Two years of gender identity service for minors: overrepresentation of natal girls with severe problems in adolescent development. Child Adolesc Psychiatry Ment Health 9(1):1–9CrossRef Kaltiala-Heino R, Sumia M, Työläjärvi M, Lindberg N (2015) Two years of gender identity service for minors: overrepresentation of natal girls with severe problems in adolescent development. Child Adolesc Psychiatry Ment Health 9(1):1–9CrossRef
19.
go back to reference Kaltiala R, Bergman H, Carmichael P, de Graaf NM, Egebjerg Rischel K, Frisen L, Waehre A (2020) Time trends in referrals to child and adolescent gender identity services: a study in four Nordic countries and in the UK. Nord J Psychiatry 74(1):40–44CrossRefPubMed Kaltiala R, Bergman H, Carmichael P, de Graaf NM, Egebjerg Rischel K, Frisen L, Waehre A (2020) Time trends in referrals to child and adolescent gender identity services: a study in four Nordic countries and in the UK. Nord J Psychiatry 74(1):40–44CrossRefPubMed
20.
go back to reference Larkin M, Shaw R, Flowers P (2019) Multiperspectival designs and processes in interpretative phenomenological analysis research. Qual Res Psychol 16(2):182–198CrossRef Larkin M, Shaw R, Flowers P (2019) Multiperspectival designs and processes in interpretative phenomenological analysis research. Qual Res Psychol 16(2):182–198CrossRef
21.
go back to reference Loomes R, Hull L, Mandy WPL (2017) What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry 56(6):466–474CrossRefPubMed Loomes R, Hull L, Mandy WPL (2017) What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry 56(6):466–474CrossRefPubMed
22.
go back to reference MacLeod A, Lewis A, Robertson C (2013) ‘Why should I be like bloody R ain M an?!’Navigating the autistic identity. Br J Special Educ 40(1):41–49CrossRef MacLeod A, Lewis A, Robertson C (2013) ‘Why should I be like bloody R ain M an?!’Navigating the autistic identity. Br J Special Educ 40(1):41–49CrossRef
23.
go back to reference May T, Pang K, Williams KJ (2017) Gender variance in children and adolescents with autism spectrum disorder from the National Database for Autism Research. Int J Transgenderism 18(1):7–15CrossRef May T, Pang K, Williams KJ (2017) Gender variance in children and adolescents with autism spectrum disorder from the National Database for Autism Research. Int J Transgenderism 18(1):7–15CrossRef
24.
go back to reference McStay RL, Dissanayake C, Scheeren A, Koot HM, Begeer S (2014) Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism 18(5):502–510CrossRefPubMed McStay RL, Dissanayake C, Scheeren A, Koot HM, Begeer S (2014) Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism 18(5):502–510CrossRefPubMed
27.
go back to reference Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, Baron-Cohen S (2021) Association of race/ethnicity and social disadvantage with autism prevalence in 7 million school children in England. JAMA Pediatr 175(6):e210054CrossRefPubMedPubMedCentral Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, Baron-Cohen S (2021) Association of race/ethnicity and social disadvantage with autism prevalence in 7 million school children in England. JAMA Pediatr 175(6):e210054CrossRefPubMedPubMedCentral
28.
go back to reference Simons L, Schrager SM, Clark LF, Belzer M, Olson J (2013) Parental support and mental health among transgender adolescents. J Adolesc Health 53(6):791–793CrossRefPubMed Simons L, Schrager SM, Clark LF, Belzer M, Olson J (2013) Parental support and mental health among transgender adolescents. J Adolesc Health 53(6):791–793CrossRefPubMed
29.
go back to reference Smith JA, Flowers P, Larkin M (2009) Interpretative phenomenological analysis: theory, method and research. Sage, London Smith JA, Flowers P, Larkin M (2009) Interpretative phenomenological analysis: theory, method and research. Sage, London
30.
go back to reference Steensma TD, Biemond R, de Boer F, Cohen-Kettenis PT (2011) Desisting and persisting genderdysphoria after childhood: a qualitative follow-up study. Clin Child Psychol Psychiatry 16(4):499–516CrossRefPubMed Steensma TD, Biemond R, de Boer F, Cohen-Kettenis PT (2011) Desisting and persisting genderdysphoria after childhood: a qualitative follow-up study. Clin Child Psychol Psychiatry 16(4):499–516CrossRefPubMed
31.
go back to reference Strang JF, Kenworthy L, Dominska A, Sokoloff J, Kenealy LE, Berl M, Luong-Tran C (2014) Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Arch Sex Behav 43(8):1525–1533CrossRefPubMed Strang JF, Kenworthy L, Dominska A, Sokoloff J, Kenealy LE, Berl M, Luong-Tran C (2014) Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Arch Sex Behav 43(8):1525–1533CrossRefPubMed
32.
go back to reference Strang JF, Powers MD, Knauss M, Sibarium E, Leibowitz SF, Kenworthy L, Pervez N (2018) “They thought it was an obsession”: trajectories and perspectives of autistic transgender and gender-diverse adolescents. J Autism Dev Disord 48(12):4039–4055CrossRefPubMed Strang JF, Powers MD, Knauss M, Sibarium E, Leibowitz SF, Kenworthy L, Pervez N (2018) “They thought it was an obsession”: trajectories and perspectives of autistic transgender and gender-diverse adolescents. J Autism Dev Disord 48(12):4039–4055CrossRefPubMed
33.
go back to reference Strang JF, van der Miesen AI, Caplan R, Hughes C, daVanport S, Lai MC (2020) Both sex-and gender-related factors should be considered in autism research and clinical practice. Autism 24:539–543CrossRefPubMed Strang JF, van der Miesen AI, Caplan R, Hughes C, daVanport S, Lai MC (2020) Both sex-and gender-related factors should be considered in autism research and clinical practice. Autism 24:539–543CrossRefPubMed
35.
36.
go back to reference Tuffour I (2017) A critical overview of interpretative phenomenological analysis: a contemporary qualitative research approach. J Healthcare Commun 2(4):52CrossRef Tuffour I (2017) A critical overview of interpretative phenomenological analysis: a contemporary qualitative research approach. J Healthcare Commun 2(4):52CrossRef
37.
go back to reference van der Miesen AI, de Vries AL, Steensma TD, Hartman CA (2018) Autistic symptoms in children and adolescents with gender dysphoria. J Autism Dev Disord 48(5):1537–1548CrossRefPubMed van der Miesen AI, de Vries AL, Steensma TD, Hartman CA (2018) Autistic symptoms in children and adolescents with gender dysphoria. J Autism Dev Disord 48(5):1537–1548CrossRefPubMed
38.
go back to reference Walsh RJ, Krabbendam L, Dewinter J, Begeer S (2018) Brief report: Gender identity differences in autistic adults: associations with perceptual and socio-cognitive profiles. J Autism Dev Disord 48(12):4070–4078CrossRefPubMed Walsh RJ, Krabbendam L, Dewinter J, Begeer S (2018) Brief report: Gender identity differences in autistic adults: associations with perceptual and socio-cognitive profiles. J Autism Dev Disord 48(12):4070–4078CrossRefPubMed
39.
go back to reference Wood-Downie H, Wong B, Kovshoff H, Mandy W, Hull L, Hadwin JA (2021) Sex/gender differences in camouflaging in children and adolescents with autism. J Autism Dev Disord 51(4):1353–1364CrossRefPubMed Wood-Downie H, Wong B, Kovshoff H, Mandy W, Hull L, Hadwin JA (2021) Sex/gender differences in camouflaging in children and adolescents with autism. J Autism Dev Disord 51(4):1353–1364CrossRefPubMed
40.
go back to reference Warrier V, Greenberg DM, Weir E, Buckingham C, Smith P, Lai MC, Baron-Cohen S (2020) Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun 11(1):1–12CrossRef Warrier V, Greenberg DM, Weir E, Buckingham C, Smith P, Lai MC, Baron-Cohen S (2020) Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun 11(1):1–12CrossRef
41.
go back to reference Westwater JJ, Riley EA, Peterson GM (2019) What about the family in youth gender diversity? A literature review. Int J Transgenderism 20(4):351–370CrossRef Westwater JJ, Riley EA, Peterson GM (2019) What about the family in youth gender diversity? A literature review. Int J Transgenderism 20(4):351–370CrossRef
Metadata
Title
The lived experience of gender dysphoria in autistic young people: a phenomenological study with young people and their parents
Authors
Kate Cooper
Catherine Butler
Ailsa Russell
William Mandy
Publication date
04-04-2022
Publisher
Springer Berlin Heidelberg
Published in
European Child & Adolescent Psychiatry / Issue 9/2023
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI
https://doi.org/10.1007/s00787-022-01979-8

Other articles of this Issue 9/2023

European Child & Adolescent Psychiatry 9/2023 Go to the issue