May 30, 2023
This week we have a unique opportunity to be taught about a genetic disorder commonly referred to as “intersex” – through the words of Amy’s sister. In a time when there are so many confusing messages about things like: “a third sex,” “transgender,” “non-binary,” and “gender dysphoria,” we appreciate this family’s willingness to share their experience and teach us.
It is also refreshing to be reminded that while we each have our unique interests and talents, and sometimes those might not align with the traditional interests of our gender, those are not reasons to seek to change what cannot be changed – our biology.
Toward better understanding,
Wendy Wixom, President
United Families International
My Intersex Sister
By Joy Godwin
My sister was born in 1974 with the head of a penis protruding from her vulva. I don’t know if intersex was a term then, but her pediatrician told my parents they could choose the gender of their child. Our mother insisted she was a girl and named her Amy.
I’m nearly six years older than her, so I remember my mother changing her diaper and matter-of-factly telling me about the surgery she would have in a few months to recede the penis into her vagina. She also had a uterus but underdeveloped ovaries that would have to be removed due to the heightened likelihood of developing cancer.
It was another six years before our mother had the opportunity to meet with a geneticist and learn that Amy had been born with a genetic disorder affecting 1 in every 2000 female births, called Turner syndrome. The geneticist assured our mother that Turner syndrome is a female disorder because it is caused by an absence of all or part of one X sex chromosome.
Strictly speaking, females are born with two X chromosomes and males are born with one X and one Y. Because the Y chromosome carries the genetic code for male traits, without a Y sex chromosome Amy, and over 2 million other women with Turner syndrome, are biologically female.
Socialization Can Trigger Gender Dysphoria
The year before my sister was born, the term gender dysphoria disorder was proposed to describe the discontent some people who identify as transgender may feel. Surprisingly, Amy has never felt gender dysphoria even though she experienced some of the typical detriments caused by Turner syndrome and had a hard time fitting in.
Socially, Amy’s interests were more traditionally masculine, but she didn’t have the stature or physicality in her teens to play competitive sports like her brothers. She also wasn’t particularly interested in the feminine things her sisters did. In her words, “I didn’t care about girl stuff or boy stuff, I just did what I wanted to do.”
Outside our family circle, her disorder left her without close friendships through most of her teen and young adult life; which limited her peer socialization. But to us, Amy was just Amy, and she was a girl.
The APA Dictionary of Psychology defines socialization as “the process by which individuals acquire social skills, beliefs, values, and behaviors necessary to function effectively in society or in a particular group”.
To know who we are and how we fit in the world we need feedback from each other. Our first words, first steps, first playdates, first dates, and first kisses are the outcome of socialization. It’s the beautiful dance of learning the steps of life. Because of her disability, Amy was never quite in step with everyone else, but most of us tread on a few toes as we are learning the moves of humanity.
If it leads us to doubt ourselves, socialization can also be harmful. As may be the case with rapid-onset gender dysphoria which research shows “appears to be a novel condition that emerges from cohort and contagion effects and novel social pressures.” Adolescents who see positive messages about gender dysphoric teens or adults may begin to question their own identity.
My sister, who was born intersex, never heard these messages so she never questioned her sex or as some would say, the gender our mother “chose for her.” But what if someone she trusted had told her that she wasn’t a female because she walked and talked and acted more like a boy? She was happy being a girl, but this may have led her to question her identity and develop the depression, anxiety, and suicidal ideation of gender dysphoria.
Gender Is a Core Identifier
It is important to point out that the term “intersex,” although still used, is not the preferred term for those who experience Differences in Sexual Development or DSD. The acronym “DSD” is sometimes clinically referred to as “Disorders of Sexual Development,” but “Differences in Sexual Development” is, appropriately, associated with less stigma.
Because gender identity is formed at such a young age, the Intersex Society of North America recommend raising your child with their binary gender. This solution is also supported by an analysis of multiple studies, which reports that only about 15% of children who are diagnosed with gender identity disorder remain gender dysphoric in adolescence.
The American College of Pediatrics concludes that if a child’s gender dysphoria is not socially affirmed (i.e., acting like the other gender or receiving cross-sex therapies) “youth emerge physically and psychologically intact after passing through puberty”.
What Causes Gender Identity Issues
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) discusses the possible genetic connections of gender dysphoria. Genome research has shown an interaction between several genes and variations of DNA sequences “that may affect in utero sexual differentiation of the brain, contributing to gender dysphoria in individuals assigned male at birth” …
However, “no [internal] abnormalities in sex-hormone levels have been found in individuals born male, and only low increases in [male hormones] has been found in individuals born female who suffer from gender dysphoria”.
According to the DSM-5, there is no straight forward physiological cause for gender dysphoria, but researchers have found some commonalities among people who experience it.
Unhealthy relationships with fathers
History of abuse and complex trauma
Same-sex attraction to birth sex
The Dutch Treatment
Although there is no evidence that gender dysphoria has a biological root, the common treatment in the US today focuses almost entirely on the child’s biology.
Advocates do recommend conducting psychological evaluations and interventions before medical treatment begins, however there are no requirements for physicians to do this before prescribing medications with known detrimental health consequences.
Monique Robles, a board certified pediatric critical care physician, has written about some of the effects of these medications on the developing child. “Many serious health concerns have been associated with puberty-suppressing hormones, including decreased bone mineral density, increased likelihood of venous thromboembolic events, development of an abnormal lipid profile and metabolic syndrome, and increased risk of cardiovascular disease and cancer. Most troubling of all, they lead to sterility”.
The healthy development of children who receive these treatments is arrested and, if treatment is continued, is permanently damaged, but there is no guarantee their gender dysphoria will be healed. In a long-term Swedish follow up study, researchers found that, “Persons with transsexualism, after sex reassignment, have considerably higher risks for mortality, suicidal behavior, and psychiatric morbidity than the general population”.
What Should Parents Do?
My sister was born with a genetic disability that required medical treatment. As an infant, she received surgeries to alter or remove sex organs, and then received hormone treatments that signaled her body to develop female sex characteristics because she had no ovaries to produce vital female hormones. These are the same types of drugs given to teens suffering from gender dysphoria to change their chemical biology.
It is alarming that children with normal, healthy bodies are being treated with the same therapies and surgeries that prevented my sister from developing cancer, but also guaranteed she would never have children. Ironically, the outcome of these treatments disable a healthy child by causing permanent infertility, and with little chance of healing their gender dysphoria.
For the very small percentage of children born with a biological intersex condition, parents should seek out reliable medical advice and support. But for biologically normal children and adolescents, parents need to find programs that can address the underlying psychological issues of gender dysphoria, instead of medical treatments that can only change the outward appearance of the child’s body. When we use medical treatments to cure cognitive dissonance, we’re not healing, we’re harming.
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Joy Godwin is a veteran adapted needs teacher working towards earning her CFLE. Her and her husband of 34 years have five children, four in-law children, and two grandchildren. Her greatest joys are spending time with her children and grandchildren, being in a quiet place alone with her husband, gardening, teaching, and learning about how to build happy families.
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References
American College of Pediatricians. (2017). Gender dysphoria in children. Issues in Law & Medicine, 32(2), 287–304. https://acpeds.org/position-statements/gender-dysphoria-in-children
American Psychiatric Association. (2022). Gender dysphoria. In Diagnostic and Statistical Manual of Mental Disorders (5th ed., text rev.). https://www.psychiatry.org/psychiatrists/practice/dsm
Capetillo-Ventura, N.C., Jalil-Pérez, S.I., Motilla-Negrete, K. (2015). Gender dysphoria: An overview. Medicina Universitaria, 17 (66), 53-58. https://www.sciencedirect.com/science/article/pii/S1665579615000071#:~:text=The%20term%20%E2%80%9Cgender%20dysphoria%20syndrome,gender%20identity%20and%20assigned%20sex
Giovanardi, G., Vitelli, R., Maggiora Vergano, C., Fortunato, A., Chianura, L., Lingiardi, V., & Speranza, A. M. (2018). Attachment patterns and complex trauma in a sample of adults diagnosed with gender dysphoria. Frontiers in Psychology, 9. https://doi.org/10.3389/fpsyg.2018.00060
Intersex Society of North America. (n.d.). What is intersex? Intersex Society of North America. Accessed 06/11/2022. https://isna.org/faq/what_is_intersex/
Kaltiala-Heino, R., Bergman, H., Työläjärvi, M., & Frisén, L. (2018). Gender dysphoria in adolescence: Current perspectives. Adolescent Health, Medicine and Therapeutics, 9, 31–41. https://doi.org/10.2147/AHMT.S135432
Martinez, M., Osornio, A., May, A., Ling, M., Halim, K., Zosuls, M. (2020). Gender: Awareness, identity, and stereotyping. ScienceDirect. Accessed 06/11/2022. https://www.sciencedirect.com/topics/psychology/gender-stability
Robles, M. (2019). Understanding gender dysphoria and its treatment in children and adolescents. Public Discourse. Accessed 05/14/2022. https://www.thepublicdiscourse.com/2019/04/51024/
Steensma, T. D., Kreukels, B.P., de Vries, A.L., Cohen-Kettenis, P.T. (2013). Gender identity development in adolescence. Hormones and Behavior, 64 (2), 288-297 https://pubmed.ncbi.nlm.nih.gov/23998673/
Sumia, M., Lindberg, N., Työläjärvi, M., & Kaltiala-Heino, R. (2016). Early pubertal timing is common among adolescent girl-to-boy sex reassignment applicants. The European Journal of Contraception & Reproductive Health Care: The official Journal of the European Society of Contraception, 21(6), 483–485. https://doi.org/10.1080/13625187.2016.1238893
Turner Syndrome Foundation. (n.d.). What is turner syndrome? Turner Syndrome Foundation. Accessed 06/11/2022. https://turnersyndromefoundation.org/what_is_turner_syndrome/
Veissière, S.P. (2018). Why is transgender identity on the rise among teens? Psychology Today. Accessed 05/14/2022. https://www.psychologytoday.com/us/blog/culture-mind-and-brain/201811/why-is-transgender-identity-the-rise-among-teens