Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

09-12-2022 | Original Paper

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

Auteurs: T Brandsma, K Visser, J.J.G Volk, A Balleur van Rijn, L.P Dekker

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2024

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.

vorige artikel Caregiver Attributions of Toddlers’ Behaviors: A Comparison Between Groups of Children with Differing Developmental Concerns

volgende artikel Extending the Usefulness of the Brief Observation of Social Communication Change (BOSCC): Validating the Phrase Speech and Young Fluent Version

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

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

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.PubMedCrossRef

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.

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.CrossRef

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.CrossRef

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.PubMedCrossRef

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.CrossRef

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

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.CrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedPubMedCentralCrossRef

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

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.PubMedCrossRef

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.

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.PubMedCrossRef

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.PubMedCrossRefADS

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

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

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

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.CrossRef

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.

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.CrossRef

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.CrossRef

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.PubMedCrossRef

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.

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

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.CrossRef

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.PubMedCrossRef

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

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.

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.PubMedCrossRef

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

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.CrossRef

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.PubMedPubMedCentralCrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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.PubMedCrossRef

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.CrossRef

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.PubMedCrossRef

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.

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.PubMedCrossRef

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.PubMedCentralCrossRef

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

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

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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.PubMedCrossRef

Titel: A Pilot Study on the Effect of Peer Support on Quality of Life of Adolescents with Autism Spectrum Disorder and Gender Dysphoria
Auteurs: T Brandsma
K Visser
J.J.G Volk
A Balleur van Rijn
L.P Dekker
Publicatiedatum: 09-12-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 3/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-022-05832-4

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 3/2024

Pre- and Perinatal Risk Factors for Youth with Autism Spectrum Disorder Versus Youth with Other Mental Health Disorders

A Qualitative Study of Adults’ and Support Persons’ Experiences of Support After Autism Diagnosis

Correction: Autism Prevalence and the Intersectionality of Assigned Sex at Birth, Race, and Ethnicity on Age of Diagnosis

Contrasting Views of Autism Spectrum Traits in Adults, Especially in Self-Reports vs. Informant-Reports for Women High in Autism Spectrum Traits

Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process

Factors Predicting Poor Mental and Physical Health in Parents of Children with Autism Spectrum Disorder: Results from 2016 to 2019 National Survey of Children’s Health