Abstract
Caregivers can play a key role in helping intersex children face a world in which intersex issues are often misunderstood, pathologized, and stigmatized. However, there is a dearth of literature centering intersex individuals’ perspectives, experiences, and needs. In order to aid caregivers in becoming more positive socialization influences for their intersex children, we explored intersex emerging adults’ recommendations for caregivers of an intersex child based on their own experiences growing up. Consultants from interACT Advocates for Intersex Youth advised on this project throughout design, recruitment, analysis, and reporting stages. Guided by a critical intersex perspective and social cognitive theory, the first author conducted interviews with 28 emerging adults (ages 18–29) who identify as intersex and/or have a variation in sex characteristics. Using thematic analysis to analyze these interviews, the coding team identified four themes of recommendations for caregivers of an intersex child based on participants’ experiences growing up: (a) Make it Okay to Talk About, (b) Get Informed and Connected, (c) Center Your Child’s Choices and Feelings, and (d) Disrupt Systems of Oppression. These findings suggest that caregivers in the lives of intersex children and adolescents work to break the silence around intersex topics, seek education about intersex issues, connect to resources, center the child’s feelings and choices, and disrupt systems of oppression that harm intersex individuals.
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References
Akers, A. Y., Holland, C. L., & Bost, J. (2011). Interventions to improve parental communication about sex: A systematic review. Pediatrics, 127(3), 494–510. https://doi.org/10.1542/peds.2010-2194.
Alderson, J., Madill, A., & Balen, A. (2004). Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome. British Journal of Health Psychology, 9(1), 81–100. https://doi.org/10.1348/135910704322778740.
Amos, N., Hart, B., Hill, A. O., Melendez-Torres, G. J., McNair, R., Carman, M., Lyons, A., & Bourne, A. (2023). Health intervention experiences and associated mental health outcomes in a sample of LGBTQ people with intersex variations in Australia. Culture Health & Sexuality, 25(7), 833–846. https://doi.org/10.1080/13691058.2022.2102677.
Anderson, R. E., McKenny, M. C., & Stevenson, H. C. (2019). EMBRace: Developing a racial socialization intervention to reduce racial stress and enhance racial coping among black parents and adolescents. Family Process, 58(1), 53–67. https://doi.org/10.1111/famp.12412.
Astle, S. (2023). Support the shit out of them: Intersex emerging adults’ socialization experiences and recommendations for caregivers of an intersex child [Doctoral dissertation, Kansas State University]. ProQuest.
Astle, S., McAllister, P., & Pariera, K. (2022). Self of the parent: An expanded social cognitive perspective on parent–child sexual communication. Journal of Family Theory & Review. https://doi.org/10.1111/jftr.12452. Advance online publication.
Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Prentice-Hall.
Baratz, A. (2015). The need for support and education for parents of children with reproductive differences. BMJ: British Medical Journal, 351, h717. https://doi.org/10.1136/bmj.h5717.
Blackless, M., Charuvastra, A., Derryck, A., Fausto-Sterling, A., Lauzanne, K., & Lee, E. (2000). How sexually dimorphic are we? Review and synthesis. American Journal of Human Biology, 12(2), 151–166. https://doi.org/10.1002/(SICI)1520-6300(200003/04)12:2<151::AID-AJHB1>3.0.CO;2-F.
Braun, V., & Clarke, V. (2022). Thematic analysis: A practical guide. Sage Publications. https://doi.org/10.53841/bpsqmip.2022.1.33.46.
Brömdal, A., Zavros-Orr, A., Lisahunter, Hand, K., & Hart, B. (2021). Towards a whole-school approach for sexuality education in supporting and upholding the rights and health of students with intersex variations. Sex Education, 21(5), 568–583. https://doi.org/10.1080/14681811.2020.1864726.
Carpenter, M., Dalke, K. B., & Earp, B. D. (2023). Endosex. Journal of Medical Ethics, 49(3), 225–226. https://doi.org/10.1136/medethics-2022-108317.
Connor, J., & Atkinson, C. (2022). An exploratory study of the retrospective educational experiences of young intersex adults. Educational & Child Psychology, 39(1), 60–75. https://doi.org/10.53841/bpsecp.2022.39.1.60.
Cornwall, S. (2009). Theologies of resistance: Intersex/DSD, disability, and the queering the ‘real world.’ In Holmes, M. (Ed.), Critical intersex (pp. 15–40). Routledge. https://doi.org/10.4324/9781315575018-10.
Crocetti, D., Berry, A., & Monro, S. (2023). Navigating the complexities of adult healthcare for individuals with variations of sex characteristics: From paediatric emergencies to a sense of abandonment. Culture, Health & Sexuality. Advance online publicationhttps://doi.org/10.1080/13691058.2023.2208194.
Davis, G. (2015). Contesting intersex: The dubious diagnosis. NYU.
de Neve-Enthoven, N. G. M., Callens, N., Van Kuyk, M., Verhaak, C. M., Van Der Ende, J., Drop, S. L. S., Cohen-Kettenis, P. T., Dessens, A. B., & on behalf of the Dutch Study Group on DSD. (2022). Sexual self-concept in women with disorders/differences of sex development. Archives of Sexual Behavior, 51(4), 2213–2229. https://doi.org/10.1007/s10508-021-02188-1.
Dozier, M., Bernard, K., & Roben, C. K. P. (2018). Attachment and biobehavioral catch-up. In H. Steele, & M. Steele (Eds.), Handbook of attachment-based interventions (pp. 27–49). The Guilford.
Flores, D., & Barroso, J. (2017). 21st century parent–child sex communication in the United States: A process review. The Journal of Sex Research, 54(4–5), 532–548. https://doi.org/10.1080/00224499.2016.1267693.
Flores, D., Docherty, S. L., Relf, M. V., McKinney, R. E., & Barroso, J. V. (2019). It’s almost like gay sex doesn’t exist: Parent-child sex communication according to gay, bisexual, and queer male adolescents. Journal of Adolescent Research, 34(5), 528–562. https://doi.org/10.1177/0743558418757464.
Frank, S. E. (2018). Intersex and intimacy: Presenting concerns about dating and intimate relationships. Sexuality & Culture, 22(1), 127–147. https://doi.org/10.1007/s12119-017-9456-4.
Gough, B., Weyman, N., Alderson, J., Butler, G., & Stoner, M. (2008). They did not have a word’: The parental quest to locate a ‘true sex’ for their intersex children. Psychology & Health, 23(4), 493–507. https://doi.org/10.1080/14768320601176170.
Hegarty, P., & Smith, A. (2023). Public understanding of intersex: An update on recent findings. International Journal of Impotence Research, 35(1), 72–77. https://doi.org/10.1038/s41443-021-00485-w.
Holmes, M. (Ed.). (2009). Critical intersex. Routledge.
Human Rights Watch (2017). I want to be like nature made me: Medically unnecessary surgeries on intersex children in the UShttps://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us#.
IGLYO, & Europe, O. I. I. & EPA. (n.d.) Supporting your intersex child. https://www.iglyo.com/wp-content/uploads/2018/10/Supporting-Your-Intersex-Child.pdf.
interACT Advocates for Intersex Youth (n.d.-a). What we wish our parents knewhttps://live-interact-advocates.pantheonsite.io/wp-content/uploads/2015/12/BROCHURE-interACT-Parents-final-web.pdf.
interACT Advocates for Intersex Youth (n.d.-b). What we wish our doctors knew. https://live-interact-advocates.pantheonsite.io/wp-content/uploads/2015/12/BROCHURE-interACT-Doctors-final-web.pdf.
interACT Advocates for Intersex Youth (2016). Intersex definitionshttps://interactadvocates.org/intersex-definitions/#:~:text=Intersex%20is%20an%20umbrella%20term,organs%20like%20testes%20or%20ovaries.&text=Intersex%20people%20can%20have%20any%20gender%20identity%20and%20sexual%20orientation.
Intersex Justice Project (2021). Intersex Justice Project. https://www.intersexjusticeproject.org/.
Jones, T. (2018). Intersex studies: A systematic review of international health literature. SAGE Open, 8(2), 1–22. https://doi.org/10.1177/2158244017745577.
Jones, T., Bonnie, H., Carpenter, M., Ansara, G., Leonard, W., & Lucke, J. (2016). Intersex: Stories and statistics from Australia. Open Book. https://doi.org/10.11647/OBP.0089.
Jorge, J. C., Valerio-Pérez, L., Esteban, C., & Rivera-Lassen, A. I. (2021). Intersex care in the United States and international standards of human rights. Global Public Health, 16(5), 679–691. https://doi.org/10.1080/17441692.2019.1706759.
Kim, J. L., & Ward, L. M. (2007). Silence speaks volumes: Parental sexual communication among Asian American emerging adults. Journal of Adolescent Research, 22(1), 3–31. https://doi.org/10.1177/0743558406294916.
Lampalzer, U., Briken, P., & Schweizer, K. (2021). That decision really was mine… insider perspectives on health care controversies about intersex/diverse sex development. Culture Health & Sexuality, 23(4), 472–483. https://doi.org/10.1080/13691058.2021.1892828.
Lesbian, U. C. S. F. (2023). Gay, Bisexual, and Transgender Resource Center. General definitionshttps://lgbt.ucsf.edu/glossary-terms.
LGBTQ + Primary, H. (2022). Heteronormativity & cisnormativity. https://www.lgbtqprimaryhub.com/heteronormativity-cisnormativity.
Lundberg, T., Roen, K., Kraft, C., & Hegarty, P. (2021). How young people talk about their variations in sex characteristics: Making the topic of intersex talkable via sex education. Sex Education, 1–16. https://doi.org/10.1080/14681811.2021.1911796. Advance online publication.
MacKenzie, D., Huntington, A., & Gilmour, J. A. (2009). The experiences of people with an intersex condition: A journey from silence to voice. Journal of Clinical Nursing, 18(12), 1775–1783. https://doi.org/10.1111/j.1365-2702.2008.02710.x.
Magister, S. (2023, September 4). Intersex media representation from around the world. Medium. https://medium.com/prismnpen/intersex-media-representation-from-around-the-world-4bbdf5e523f3.
Malatino, H. (2019). Queer embodiment: Monstrosity, medical violence, and intersex experience. University of Nebraska.
Martin, K. A. (2009). Normalizing heterosexuality: Mothers’ assumptions, talk, and strategies with young children. American Sociological Review, 74(2), 190–207. https://doi.org/10.1177/000312240907400202.
Milner, I. V., H. R (2007). Race, culture, and researcher positionality: Working through dangers seen, unseen, and unforeseen. Educational Researcher, 36(7), 388–400. https://doi.org/10.3102/0013189X07309471.
Minto, C. L., Liao, L. M., Woodhouse, C. R., Ransley, P. G., & Creighton, S. M. (2003). The effect of clitoral surgery on sexual outcome in individuals who have intersex conditions with ambiguous genitalia: A cross-sectional study. The Lancet, 361(9365), 1252–1257. https://doi.org/10.1016/S0140-6736(03)12980-7.
Morland, I., & Willox, D. (2017). Queer theory. Bloomsbury Publishing.
Newcomb, M. E., Feinstein, B. A., Matson, M., Macapagal, K., & Mustanski, B. (2018). I have no idea what’s going on out there: Parents’ perspectives on promoting sexual health in lesbian, gay, bisexual, and transgender adolescents. Sexuality Research and Social Policy, 15(2), 111–122. https://doi.org/10.1007/s13178-018-0326-0.
Nokoff, N. J., Palmer, B., Mullins, A. J., Aston, C. E., Austin, P., Baskin, L., & Wisniewski, A. B. (2017). Prospective assessment of cosmesis before and after genital surgery. Journal of Pediatric Urology, 13(1), 28e1–e6. https://doi.org/10.1016/j.jpurol.2016.08.017.
Open Society Foundations. (2019). What are intersex rights? https://www.opensocietyfoundations.org/explainers/what-are-intersex-rights#:~:text=Intersex%20people%20often%20experience%20prejudice,genitalia%2C%20face%20abandonment%20and%20violence.
Paechter, C. (2021). The rights and interests of trans and intersex children: Considerations, conflicts and implications in relation to the UNCRC. Journal of Gender Studies, 30(7), 844–854. https://doi.org/10.1080/09589236.2021.1888285.
Pagonis, P. (2023). Nobody needs to know: A memoir. Topple Books/Little A.
Pariera, K. L., & Brody, E. (2018). Talk more about it: Emerging adults’ attitudes about how and when parents should talk about sex. Sexuality Research and Social Policy, 15(2), 219–229. https://doi.org/10.1007/s13178-017-0314-9.
Pasterski, V., Mastroyannopoulou, K., Wright, D., Zucker, K. J., & Hughes, I. A. (2014). Predictors of posttraumatic stress in parents of children diagnosed with a disorder of sex development. Archives of Sexual Behavior, 43(2), 369–375. https://doi.org/10.1007/s10508-013-0196-8.
Pew Research Center. (2014). Global morality. https://www.pewresearch.org/global/interactives/global-morality/.
Pew Research Center. (2018). Americans are far more religious than adults in other wealthy nations. https://www.pewresearch.org/fact-tank/2018/07/31/americans-are-farmore-religious-than-adults-in-other-wealthy-nations/.
Preves, S. E. (2002). Sexing the intersexed: An analysis of sociocultural responses to intersexuality. Signs: Journal of Women in Culture and Society, 27(2), 523–556. https://doi.org/10.1086/495696.
Preves, S. E. (2003). Intersex and identity: The contested self. Rutgers University Press.
Randjelovic, K., Kumwenda, R., Macauley, J., Mladenovic, N., & Konstantinov, B. (2017). Intersex research study: Albania, Bosnia and Herzegovina, the Former Yugoslav Republic of Macedonia and Serbia. United Nations Development Programme. https://www.lgbti-era.org/sites/default/files/pdfdocs/Intersex%20Research%20Study-ENG.pdf.
Roen, K. (2009). Clinical intervention and embodied subjectivity: Atypically sexed children and their parents. In Holmes, M. (Ed.), Critical intersex (pp. 15–40). Routledge. https://doi.org/10.4324/9781315575018-2.
Rosenwohl-Mack, A., Tamar-Mattis, S., Baratz, A. B., Dalke, K. B., Ittelson, A., Zieselman, K., & Flatt, J. D. (2020). A national study on the physical and mental health of intersex adults in the U.S. PLOS ONE, 15(10), 277–290. https://doi.org/10.1371/journal.pone.0240088.
Rubin, D. A., Wolff, M., & Swarr, A. L. (2022). Creating intersex justice. TSQ: Transgender Studies Quarterly, 9(2), 187–195. https://doi.org/10.1215/23289252-9612823.
Rubinsky, V., & Cooke-Jackson, A. (2021). It would be nice to know I’m allowed to exist: Designing ideal familial adolescent messages for LGBTQ women’s sexual health. American Journal of Sexuality Education, 16(2), 221–237. https://doi.org/10.1080/15546128.2021.1880346.
Samarova, V., Shilo, G., & Diamond, G. M. (2014). Changes in youths’ perceived parental acceptance of their sexual minority status over time. Journal of Research on Adolescence, 24(4), 681–688. https://doi.org/10.1111/jora.12071.
Sani, A. M., Soh, K. L., Ismail, I. A., Arshad, M. M., Mungadi, I. A., Yau, S. L., & Soh, K. G. (2019). Experiences of people living with disorders of sex development and sex reassignment: Meta-ethnography of qualitative studies. Journal of Advanced Nursing, 75(2), 277–290. https://doi.org/10.1111/jan.13833.
Segrin, C., & Flora, J. (2019). Fostering social and emotional intelligence: What are the best current strategies in parenting? Social and Personality Psychology Compass, 13(3), e12439. https://doi.org/10.1111/spc3.12439.
Simons, J., Gonzalez, J. M., & Ramdas, M. (2020). Supporting intersex people: Effective academic and career counseling. Journal of LGBT Issues in Counseling, 14(3), 191–209. https://doi.org/10.31235/osf.io/jqwt9.
SOAS University of London (2022). SOAS trans, non-binary & intersex inclusion guidance for those supporting students. https://www.soas.ac.uk/sites/default/files/2022-11/PHUM-TNBI-StG-001.pdf.
Solebello, N., & Elliott, S. (2011). We want them to be as heterosexual as possible: Fathers talk about their teen children’s sexuality. Gender & Society, 25(3), 293–315. https://doi.org/10.1177/0891243211403926.
Sperling, J. (2021). Comprehensive sexual health education and intersex (in)visibility: An ethnographic exploration inside a California high school classroom. Sex Education, 21(5), 584–599. https://doi.org/10.1080/14681811.2021.1931834.
Steers, D. M., Andrews, G. L., Wiltshire, E. J., Ballantyne, A. J., Collings, S. C., & Stubbe, M. H. (2021). Young people with a variation in sex characteristics in Aotearoa/New Zealand: Identity, activism and healthcare decision-making. Culture Health & Sexuality, 23(4), 457–471. https://doi.org/10.1080/13691058.2020.1863472.
Television works about intersex (2022, December 8). Wikipedia. Retrieved October 13, 2023 from https://en.wikipedia.org/w/index.php?title = Television_works_about_intersex&oldid = 1126336001.
Thisisintersex.org (2023). What is intersex? This is intersex!https://thisisintersex.org/advanced/interphobia/.
United Nations Development Programme (UNDP) (2018). Intersex research study Albania, Bosnia and Herzegovina, the former Yugoslav Republic of Macedonia and Serbia 2017https://www.undp.org/sites/g/files/zskgke326/files/migration/eurasia/Intersex-Research-Study-UNDP-2017.pdf.
van Heesch, M. (2009). Do I have XY chromosomes? In Holmes, M. (Ed.), Critical intersex (pp. 15–40). Routledge. https://doi.org/10.4324/9781315575018-6.
Wilchins, R. (2002). A girl’s right to choose: Intersex children and parents challenge narrow standards of gender. National NOW Times, 34(2), 5.
Wolff, M., Rubin, D. A., & Swarr, A. L. (2022). The intersex issue. TSQ: Transgender Studies Quarterly, 9(2), 143–159. https://doi.org/10.1215/23289252-9612767.
Zeeman, L., Sherriff, N., Browne, K., McGlynn, N., Mirandola, M., Gios, L., Davis, R., Sanchez-Lambert, J., Aujean, S., Pinto, N., Farinella, F., Donisi, V., Niedźwiedzka-Stadnik, M., Rosińska, M., Pierson, A., Amaddeo, F., Health, Network, L. G. B. T. I., Taibjee, R., Toskin, I., & De Sutter, P. (2019). A review of lesbian, gay, bisexual, trans and intersex (LGBTI) health and healthcare inequalities. European Journal of Public Health, (5), 974–980. https://doi.org/10.1093/eurpub/cky226.
Zeiler, K., & Wickström, A. (2009). Why do ‘we’ perform surgery on newborn intersexed children? The phenomenology of the parental experience of having a child with intersex anatomies. Feminist Theory, 10(3), 359–377. https://doi.org/10.1177/1464700109343258.
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This work was supported by the Society for the Study of Emerging Adulthood Small Grant Award and the Kansas State University Robert H. Poresky Assistantship.
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Astle, S., Pariera, K., Anders, K.M. et al. “Support the Shit Out of Them:” Intersex Emerging Adults’ Recommendations for Caregivers of an Intersex Child. Sexuality & Culture (2024). https://doi.org/10.1007/s12119-024-10223-1
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DOI: https://doi.org/10.1007/s12119-024-10223-1