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A Pilot Study on the Effect of Peer Support on Quality of Life of Adolescents with Autism Spectrum Disorder and Gender Dysphoria

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Abstract

Gender dysphoria (GD) and Autism Spectrum Disorder (ASD) co-occur relatively often, but there is no evidence-based treatment for this specific group. Therefore, we examined the effects of a group intervention for adolescents with ASD and GD in a pilot study with a pre-post-test design. The adolescents completed questionnaires on quality of life, self-esteem, gender dysphoric feelings, and social responsiveness. Results show that participating in this peer support group seems to increase aspects of quality of life, i.e., increased parent-reported psychological well-being and decreased psychological complaints. Even though more research is needed, these results indicate that peer support is an invaluable part of treatment for adolescents with ASD and GD.

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References

  • American Psychiatric Association. (2013). DSM-5. Arlington, VA: American Psychiatric Publishing.

    Google Scholar 

  • Arrindell, W. A., & Ettema, J. H. M. (2005). Symptom checklist: handleiding bij multidimensionale psychopathologie-indicator. Amsterdam: Pearson Assessment and Information B.V.

    Google Scholar 

  • Arcelus, J., Bouman, W. P., Van Den Noortgate, W., Claes, L., Witcomb, G., & Fernandez-Aranda, F. (2015). Systematic review and meta-analysis of prevalence studies in transsexualism. European Psychiatry, 30(6), 807–815.

    Article  CAS  PubMed  Google Scholar 

  • Balci, S., Kwakman, M., & Boyer, B. (2020). Effectiveness of Competitive Memory Training (COMET) for low self-esteem in youth with Autism Spectrum Disorder: A randomized controlled pilot study. Published online

  • Balleur-van Rijn, A., & de Vries, A. L. C. (2014). Comorbide genderdysforie en autisme: hypotheses over de etiologie en een exploratie van de behandelmogelijkheden. Tijdschrift voor kinder- en jeugdpsychotherapie, 41(2), 30–47.

    Google Scholar 

  • Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004). Quality of life in children with psychiatric disorders: Self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230.

    Article  PubMed  Google Scholar 

  • Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822–833.

    Article  PubMed  PubMed Central  Google Scholar 

  • Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study. Autism, 15(1), 7–20.

    Article  PubMed  Google Scholar 

  • Bockting, W., Coleman, E., Deutsch, M. B., Guillamon, A., Meyer, I., Meyer, I. I. I., W., et al. (2016). Adult development and quality of life of transgender and gender nonconforming people. Current opinion in endocrinology diabetes and obesity, 23(2), 188.

    Article  PubMed  Google Scholar 

  • Botha, M., & Frost, D. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health, 10(1), 20–34.

    Article  Google Scholar 

  • Cantor, J. M. (2020). Transgender and gender diverse children and adolescents: fact-checking of AAP policy. Journal of Sex & Marital Therapy, 46(4), 307–313.

    Article  Google Scholar 

  • Cohen-Kettenis, P., & Van Goozen, S. H. (1997). Sex reassignment of adolescent transsexuals: a follow-up study. Journal Of The American Academy Of Child And Adolescent Psychiatry, 36(2), 263–271.

    Article  CAS  PubMed  Google Scholar 

  • Grinten, C., Verhaak, H., Steensma, C., Middelberg, T., Roeffen, T., J., & Klink, D. (2021). Gender incongruence and gender dysphoria in childhood and adolescence—current insights in diagnostics, management, and follow-up. European Journal of Pediatrics, 180(5), 1349–1357.

    Article  Google Scholar 

  • Constantino, J. N., & Gruber, C. P. (2005). The Social Responsiveness Scale Manual. California: Western Psychological Services.

    Google Scholar 

  • Corbett, B. A., Klemencic, M. R. A., West, M. E., Kim, M., & Strang, A. J.F (2022). Greater gender diversity among autistic children by self-report and parent-report. Autism Doi. https://doi.org/10.1177/13623613221085337.

    Article  Google Scholar 

  • Cusack, J., & Sterry, R. (2019). Autistica’s top 10 research priorities. https://www.autistica.org.uk/downloads/files/Autism-Top-10-Your-Priorities-for-AutismResearch.pdf.

  • Davidson, S., Morrison, A., Skagerberg, E., Russell, I., & Hames, A. (2018). A therapeutic group for young people with diverse gender identifications. Clinical Child Psychology and Psychiatry, 24(2), 241–257.

    Article  PubMed  Google Scholar 

  • De Vries, A. L., Noens, I. L., Cohen-Kettenis, P. T., van Berckelaer-Onnes, I. A., & Doreleijers, T. A. (2010). Autism spectrum disorders in gender dysphoric children and adolescents. Journal of autism and developmental disorders, 40(8), 930–936.

    Article  PubMed  PubMed Central  Google Scholar 

  • Dewinter, J., De Graaf, H., & Begeer, S. (2017). Sexual orientation, gender identity, and romantic relationships in adolescents and adults with autism spectrum disorder. Journal of autism and developmental disorders, 47(9), 2927–2934.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Delfos, M., & Gottmer, M. (2008). Leven met autisme. Houten, Nederland: Bohn Stafleu van Loghum.

    Book  Google Scholar 

  • Egilson, S. T., Ólafsdóttir, L. B., Leósdóttir, T., & Saemundsen, E. (2017). Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: self-and proxy-reports. Autism, 21(2), 133–141.

    Article  PubMed  Google Scholar 

  • Evers, K., Maljaars, J., Schepens, H., Vanaken, G. J., & Noens, I. (2022). Conceptualization of quality of life in autistic individuals. Dev Med Child Neurol, 00, 1–7.

    Google Scholar 

  • Fayers, P. M., & Machin, D. (2007). Quality of life: The assessment, analysis and interpretation of patient-reported outcomes (2nded. ed.). West Sussex, England: John Wiley and Sons Ltd.

  • Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., & Pellicano, E. (2019). Making the future together: shaping autism research through meaningful participation. Autism, 23(4), 943–953.

    Article  PubMed  Google Scholar 

  • Frith, U., & Happé, F. (1994). Language and communication in autistic disorders. Philosophical Transactions of the Royal Society of London Series B: Biological Sciences, 346(1315), 97–104.

    Article  CAS  PubMed  ADS  Google Scholar 

  • Galupo, M. P., & Pulice-Farrow, L. (2019). Subjective ratings of gender Dysphoria Scales by Transgender individuals. Archives of Sexual Behavior, 49(2), 479–488.

    Article  PubMed  Google Scholar 

  • Harter, S. (2012). Self-perception profile for adolescents: Manual and questionnaires. Denver, CO: University of Denver.

    Google Scholar 

  • Hawthorne, G., Herrman, H., & Murphy, B. (2006). Interpreting the WHOQOL-BREF: preliminary population norms and effect sizes. Social Indicators Research, 77(1), 37–59.

    Article  Google Scholar 

  • Hendricks, M. L., & Testa, R. J. (2012). Framework for clinical work with transgender and gender nonconforming clients: an adaptation of the minority stress model. Professional psychology: Research and Practice, 43, 460–467.

    Article  Google Scholar 

  • Hines, S. (2007). TransForming gender: transgender practices of identity, intimacy and care. Policy Press.

  • Hopkins, S., & Richardson, L. (2021). Gender identity: from Biological Essentialism Binaries to a nonbinary gender spectrum. In W. Leal Filho, A. Marisa Azul, L. Brandli, A. Lange Salvia, & T. Wall (Eds.), Gender Equality. Encyclopedia of the UN Sustainable Development Goals. Cham: Springer.

    Google Scholar 

  • Sievert, E. D., Schweizer, K., Barkmann, C., Fahrenkrug, S., & Becker-Hebly, I. (2021). Not social transition status, but peer relations and family functioning predict psychological functioning in a german clinical sample of children with gender dysphoria. Clinical Child Psychology and Psychiatry, 26(1), 79–95.

    Article  PubMed  Google Scholar 

  • Kalfoss, M. H., Reidunsdatter, R. J., Klöckner, C. A., et al. (2021). Validation of the WHOQOL-Bref: psychometric properties and normative data for the norwegian general population. Health And Quality Of Life Outcomes, 19, 13.

    Article  PubMed  PubMed Central  Google Scholar 

  • Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114(5), e541–e547.

    Article  PubMed  Google Scholar 

  • Kan, C. C., Geurts, H. M., & Sizoo, B. B. (2013). Multidisciplinaire richtlijn diagnostiek en behandeling van autismespectrumstoornissen bij volwassenen.

  • Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., & Clemons, T. E. (2010). Health-related quality of life in children with autism spectrum disorders: results from the autism treatment network. Journal of autism and developmental disorders, 40(6), 721–729.

    Article  PubMed  Google Scholar 

  • Lancaster, G. A., Dodd, S., & Williamson, P. R. (2004). Design and analysis of pilot studies: recommendations for good practice. Journal of evaluation in clinical practice, 10(2), 307–312.

    Article  PubMed  Google Scholar 

  • Lindley, L., & Galupo, M. P. (2020). Gender dysphoria and minority stress: support for inclusion of gender dysphoria as a proximal stressor. Psychology of Sexual Orientation and Gender Diversity, 7(3), 265.

    Article  Google Scholar 

  • Luyckx, K., Schwartx, S. J., Berzonsky, M. D., Soenens, B., Vansteenkiste, M., Smits, I., et al. (2008). Capturing ruminative exploration: extending the four-dimensional model of identity formation in late adolescence. Journal of Research in Personality, 42(1), 58–82.

    Article  Google Scholar 

  • Martin, I., & McDonald, S. (2004). An exploration of causes of Non-Literal Language problems in individuals with Asperger Syndrome. Journal Of Autism And Developmental Disorders, 34, 311–328.

    Article  PubMed  Google Scholar 

  • McGuire, J. K., Rider, G. N., Catalpa, J. M., Steensma, T. D., Cohen-Kettenis, P. T., & Berg, D. R. (2019). Utrecht Gender Dysphoria Scale – Gender Spectrum (UDGS-GS) In Milhausen, R., Sakaluk, J., Fisher, T., Davis, C., & Yarber, W. (Eds.), Handbook of Sexuality-Related Measures. New York: Routledge. Doi:https://doi.org/10.4324/9781315183169

  • Meral, B. F., & Fidan, A. (2013). The examination of psychometric properties of KIDSCREEN-short version on children with autism in Turkey. International Journal On New Trends İn Education And Their Implications, 4(2), 151–159.

    Google Scholar 

  • Meyer, I. H. (1995). Minority stress and mental health in gay men. Journal of Health and Social Behavior, 36, 38–56.

    Article  CAS  PubMed  Google Scholar 

  • Meyer, I. H. (2007). Prejudice and discrimination as social stressors. In I. H. Meyer, & M. E. Northridge (Eds.), The health of sexual minorities: Public Health Perspectives on Lesbian, Gay, bisexual and transgender populations (pp. 242–267). New York: Springer.

    Chapter  Google Scholar 

  • Murad, M. H., Elamin, M. B., Garcia, M. Z., Mullan, R. J., Murad, A., Erwin, P. J., et al. (2010). Hormonal therapy and sex reassignment: a systematic review and meta-analysis of quality of life and psychosocial outcomes. Clinical endocrinology, 72(2), 214–231.

    Article  PubMed  Google Scholar 

  • Newfield, E., Hart, S., Dibble, S., & Kohler, L. (2006). Female-to-male transgender quality of life. Quality of Life Research, 15(9), 1447–1457.

    Article  PubMed  Google Scholar 

  • Noens, I., Maljaars, J., & Steyaert, J. (2018). Interdisciplinaire begeleiding en behandeling bij kinderen en jongeren In Autismespectrumstoornis (pp. 131–148). Bohn Stafleu van Loghum, Houten.

  • Noens, I., De la Marche, W., & Scholte, E. (2012). SRS-A: Screeningslijst voor autismespectrumstoornissen bij volwassenen: Handleiding. Amsterdam, Nederland: Hogrefe Uitgevers BV.

    Google Scholar 

  • Ravens-Sieberer, U., Auquier, P., Erhart, M., Gosch, A., Rajmil, L., Bruil, J., & Mazur, J. (2007). The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 european countries. Quality of Life Research, 16(8), 1347–1356.

    Article  PubMed  Google Scholar 

  • Ristori, J., & Steensma, T. D. (2016). Gender dysphoria in childhood. International Review of Psychiatry, 28(1), 13–20.

    Article  PubMed  Google Scholar 

  • Rommelse, N., Luman, M., & Kievit, R. (2020). Slow processing speed: a cross-disorder phenomenon with significant clinical value, and in need of further methodological scrutiny. European Child & Adolescent Psychiatry, 29(10), 1325–1327.

    Article  Google Scholar 

  • Schöttle, D., Briken, P., Tüscher, O., & Turner, D. (2017). Sexuality in autism: hypersexual and paraphilic behavior in women and men with high-functioning autism spectrum disorder. Dialogues in clinical neuroscience, 19(4), 381.

    Article  PubMed  PubMed Central  Google Scholar 

  • Schwartz, S. J., Zamboanga, B. L., Luyckx, K., Meca, A., & Ritchie, R. A. (2013). Identity in emerging adulthood: reviewing the field and looking forward. Emerging Adulthood, 1(2), 96–113.

    Article  Google Scholar 

  • Simbar, M., Nazarpour, S., Mirzababaie, M., Emam Hadi, M. A., Tehrani, R., F., & Alavi Majd, H. (2018). Quality of life and body image of individuals with gender dysphoria. Journal of sex & marital therapy, 44(6), 523–532.

    Article  Google Scholar 

  • Spain, D., & Blainey, S. H. (2017). Enhancing self-esteem in adults with autism spectrum disorders: a pilot cognitive behaviour therapy (CBT) group intervention. Advances in Autism, 3(2), 66–75.

    Article  Google Scholar 

  • Strang, J. F., Kenworthy, L., Dominska, A., Sokoloff, J., Kenealy, L. E., Berl, M., Walsh, K., Menvielle, E., Slesaransky-Poe, G., Kim, K. E., Luong-Tran, C., Meagher, H., & Wallace, G. L. (2014). Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder. Archives of Sexual Behavior, 43(8), 1525–1533.

    Article  PubMed  Google Scholar 

  • Strang, J. F., Meagher, H., Kenworthy, L., de Vries, A. L., Menvielle, E., et al. (2018). Initial clinical guidelines for co-occurring autism spectrum disorder and gender dysphoria or incongruence in adolescents. Journal of Clinical Child & Adolescent Psychology, 47(1), 105–115.

    Article  Google Scholar 

  • Strang, J. F., Knauss, M., van der Miesen, A., McGuire, J. K., Kenworthy, L., Caplan, R., et al. (2020). A clinical program for transgender and gender-diverse neurodiverse/autistic adolescents developed through community-based participatory design.Journal of Clinical Child & Adolescent Psychology,1–16.

  • Strauss, P., Cook, A., Watson, V., Winter, S., Whitehouse, A., Albrecht, N., Toussaint, W., D., & Lin, A. (2021). Mental health difficulties among trans and gender diverse young people with an autism spectrum disorder (ASD): findings from Trans Pathways. Journal of Psychiatric Research, 137, 360–367.

    Article  PubMed  Google Scholar 

  • Treffers, P. D. A., Goedhart, A. W., Veerman, J. W., Van den Bergh, B. R. H., Ackaert, L., & De Rycke, L. (2002). Competentie belevingsschaal voor Adolescenten. Tijdschrift voor Psychiatrie, 7, 468–469.

    Google Scholar 

  • Van Der Miesen, A. I., Hurley, H., & De Vries, A. L. (2016). Gender dysphoria and autism spectrum disorder: a narrative review. International Review of Psychiatry, 28(1), 70–80.

    Article  PubMed  Google Scholar 

  • Van Der Miesen, A. I., De Vries, A. L., Steensma, T. D., & Hartman, C. A. (2017). Autistic symptoms in children and adolescents with gender dysphoria. Journal of Autism and Developmental Disorders, 48(5), 1537–1548.

    Article  PubMed Central  Google Scholar 

  • Van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: a meta-analysis. Autism, 19(2), 158–167.

    Article  PubMed  Google Scholar 

  • Van Os, J., Kahn, R., Denys, D., Schoevers, R. A., Beekman, A. T. F., Hoogendijk, W. J. G., et al. (2012). ROM: Gedragsnorm of dwangmaatregel? Overwegingen bij het themanummer over routine outcome monitoring. Tijdschrift voor Psychiatrie, 54(3), 245–253.

    PubMed  Google Scholar 

  • Varni, J. W., & Burwinkle, T. M. (2006). The PedsQL as a patientreported outcome in children and adolescents with attention Deficit/Hyperactivity disorder: a population-based study. Health and Quality of Life Outcomes, 4, 26.

    Article  PubMed  PubMed Central  Google Scholar 

  • Visser, K., Greaves-Lord, K., Tick, N. T., Verhulst, F. C., Maras, A., & van der Vegt, E. J. (2017). A randomized controlled trial to examine the effects of the tackling teenage psychosexual training program for adolescents with autism spectrum disorder. Journal of Child Psychology and Psychiatry, 58(7), 840–850.

    Article  PubMed  Google Scholar 

  • Wallien, M. S., & Cohen-Kettenis, P. T. (2008). Psychosexual outcome of gender-dysphoric children. Journal of the American Academy of Child & Adolescent Psychiatry, 47(12), 1413–1423.

    Article  Google Scholar 

  • World Health Organization (WHO) (2018). Gender, Equity and Human Rights: Gender. Verkregen van http://www.who.int/gender-equity-rights/understanding/gender-definition/en/.

  • WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life assessment. Psychological Medicine, 28, 551–558.

    Article  Google Scholar 

  • Woolfenden, S., Sarkozy, V., Ridley, G., & Williams, K. (2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 345–354.

    Article  Google Scholar 

  • Zainuddin, A. A., & Mahdy, Z. A. (2017). The islamic perspectives of gender-related issues in the management of patients with disorders of sex development. Archives of Sexual Behavior, 46(2), 353–360.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Sarr Autism Rotterdam, Youz & Antes, Parnassiagroep, Dynamostraat 18, 3083, AK Rotterdam, The Netherlands

    T Brandsma, K Visser & J.J.G Volk

  2. Rotterdam Autism Consortium (R.A.C.), Rotterdam, The Netherlands

    K Visser & L.P Dekker

  3. Department of Psychology Education and Child Studies, Erasmus Universiteit Rotterdam, Rotterdam, The Netherlands

    L.P Dekker

  4. Youz, Parnassiagroep & Praktijk Buitengewoon, Gorinchem, The Netherlands

    T Brandsma & A Balleur van Rijn

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Brandsma, T., Visser, K., Volk, J. et al. A Pilot Study on the Effect of Peer Support on Quality of Life of Adolescents with Autism Spectrum Disorder and Gender Dysphoria. J Autism Dev Disord 54, 997–1008 (2024). https://doi.org/10.1007/s10803-022-05832-4

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