Since 2017, the number of patients diagnosed with gender dysphoria (GD) nearly tripled, the average age of patients receiving this diagnosis fell from 31 to 26, and the diagnosis of GD has become much more common among women than men. These trends have occurred around the world. They raise questions about the proper way to evaluate and treat children and teens with GD. Good research is crucial to answer such questions. Most of the research being done, and published in high-impact journals, and cited in practice guidelines, simply sucks.
One key question when we see such trends is whether the changes represent a true rise in the prevalence or age of onset of GD or, instead, whether they are the result of ascertainment bias caused by the increased visibility and accessibility of gender medicine. Similar questions have been raised about many other diseases that have seen similar trends, including autism, depression, and ADHD. GD may, in fact, be more common today than it was 10 or 20 years ago. Or it may just be more commonly diagnosed.
The models that we have for understanding the diagnosis and treatment of GD were based on studies that were done long before this rapid rise in diagnosis. Today’s patients are clearly different, in many ways, than the patients who were diagnosed and treated in the past. Older models for evaluation and treatment, based on those different patient populations, may not be best for today’s patients.
Some people accuse doctors of being too quick to diagnose GD and treat with hormones or surgery. Child psychiatrist Miriam Grossman argues that most teens with gender dysphoria need psychotherapy, not hormones. She thinks that gender dysphoria is usually a temporary phenomenon. Psychiatrist Paul McHugh has similar views. He shut down the pioneering gender medicine program at Johns Hopkins University, claiming that “frequently heard claims about gender identity sometimes masquerade as science but are really ideological pronouncements not supported by scientific evidence.” Culture critic Camille Paglia believes that gender-affirming treatments for teens are a form of child abuse caused by “transgender mania.” Psychologist Jordan Peterson agrees.
On the other hand, most professional organizations, including the American Academy of Pediatrics, the American Medical Association, and the American Psychological Association, endorse gender-affirming treatment. They dismiss critics as close-minded and policies banning gender-affirming hormonal treatment (GAHT) for teens as harmful.
The deep disagreements reflect a misperception of current practices. Both defenders and critics of GAHT fail to recognize how many children are evaluated and how few receive hormonal treatment. In 2021, among 42,167 new diagnoses of GD among patients aged 6-17 in the United States, only 3% received puberty blocking hormones. Most such children received psychological counseling. This approach is consistent with the recommendations of the American Academy of Pediatrics, whose President recently stated that hormones and surgery are not the preferred treatment for gender dysphoric youth, and that in fact “for the vast majority of children, (we) recommend the opposite.” Oddly, the numbers don’t come from a peer-reviewed paper. They come from a journal article.
The biggest problem in gender medicine today is that there are no good studies looking at outcomes for all the children who are referred to specialists and evaluated for GD. Instead, studies focus on the relatively few who receive medical treatment. These studies give a misleading impression of the work that doctors do and of the range of treatments that are recommended.
Furthermore, even the best of those methodologically inadequate studies have other significant flaws. A recent study of outcomes for transgender youth, published in the New England Journal of Medicine, illustrates the problem. Chen and colleagues set out to determine whether outcomes were better with early treatment compared to later treatment. They recruited participants from four pediatric gender clinics from July 2016 through June 2019 and evaluated the physical and psychosocial outcomes of medical treatment for gender dysphoria. The main conclusion of the study: “Increases in appearance congruence were associated with concurrent increases in positive affect and life satisfaction and decreases in depression and anxiety symptoms.”
They do not say how the study patients were selected from among the many patients evaluated for gender dysphoria, how many patients were eligible, how many were approached, how many consented for participation in the study, or how many dropped out. More concerning, they do not describe how decisions were made about starting gender-affirming hormonal treatments rather than responding in a different way. The authors only report that, at each clinic, patients are evaluated by “a multidisciplinary team that includes medical and mental health providers that collaboratively determines whether gender dysphoria is present and whether gender-affirming medical care is appropriate.” We are not told what criteria the multidisciplinary teams used, whether it was the same at different clinics, whether some patients disagreed with the multidisciplinary team’s conclusions. It is unclear whether all centers followed international guidelines for identifying the teens who were most likely to benefit, or whether, in addition to hormonal treatment, teens received ongoing psychotherapy support.
Annelou De Vries, a pioneer in gender medicine, worries that, because of the rapid rise in GD diagnoses, many children are not getting a comprehensive medical and psychological evaluation. She understands that there can be harm in delaying treatment but also harm in providing it too soon. She calls it “an existential ethical dilemma between, on one hand, the (child’s) right for self-determination and, on the other hand, the do-not-harm principle of medical intervention.” She recommends erring on the side of caution by requiring rigorous patient assessments before the initiation of treatment, even if that may delay the initiation of treatment.
The methodologic deficiencies of the Chen study illustrate three crucial points. First, studies cannot focus on just the patients who are treated. We need outcome data on all patients who are evaluated, especially those who are diagnosed with gender dysphoria do not receive hormonal or surgical treatment. Such studies are crucial to inform counseling and shared decision making for future patients. Second, research needs to be clear and precise about how patients are evaluated and how decisions about treatment are made. Finally, clinicians must be clear about their own beliefs and biases. This is especially important because, as is clear from the disagreements among experts, people have very different beliefs about the criteria for diagnosis, treatment, and evaluation of outcomes. As is true in all other areas of medicine, doctors can easily sway patients’ choices when there are different options available.
In many countries, doctors have responded to the lack of rigorous data by changing their approach to teens with gender dysphoria. In Finland, treatment centers will “collect extensive information on the diagnostic process and the effects of different treatment methods on the mental wellbeing, social capacity and quality of life of children and on the disadvantages of procedures and on people who regret them.” A Swedish report questioned the safety of hormonal interventions for gender dysphoric youth. The Swedish health service is now offering puberty blockers and cross-sex hormones only to youth with the “classic” childhood onset of cross-sex identification and distress, which persist and cause clear suffering in adolescence. Others will be offered gender-exploratory psychotherapy. A report in the UK recommended a continuous research program to “inform understanding of the epidemiology, assessment and treatment of this group.”
The message from these controversies is clear. We now know how much we don’t know. The plethora of questions and dearth of answers is frustrating for doctors, patients, and policy makers alike. The frustration fuels fiery culture wars. In the heat of the battle, it is difficult to have the humility to admit ignorance and the patience to design and conduct good studies.
Child psychologist Scott Liebowitz is a strong proponent of such research, both as a way of getting answers and as a way of showing respect for teens and families. “It’s irresponsible to reinforce very scary statistics to families in an attempt to gain consent for treatment,” Leibowitz says. “This strategy doesn’t build the type of love and acceptance that a child needs.” Only good research will allow us to really understand and appropriately respond to gender dysphoria.
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