Doctors, it's time
By Sara Hertz
This one's for you, doctors. Our children came to you for help with gender dysphoria, in extreme distress. You looked up the American Academy of Pediatrics policy, and encouraged puberty blockers or cross sex hormones, to "affirm" them. Who doesn't want to affirm someone in distress?
We, the parents, as we always do, listened to what you said, to what our children said, and carefully looked at the information given to us. We looked more carefully than you, as our children are our lives, our hearts, our loves, not just one of the many 15 or 30 minute encounters which fill your busy days.
And what some of us parents noticed is that these medical “affirming” treatments are both dangerously aggressive, and based on, well, not much. The evidence, low quality or worse,1 doesn't indicate medical intervention is what they necessarily need or even whether it will help or harm them. And that's just the mental health outcomes. The physical harm from puberty blockers and lifetime hormones is clearer:2 chemical castration3 for those whose bodies would normally produce or grow to produce high levels of testosterone, fertility risk for all, brain effects akin to aging or Alzheimer’s, highly increased heart and stroke risk, immune disease risk, diabetes risk. What isn’t known is if there are even worse dangers than those already found.4 Oh, and please don’t tell us there’s a shown increased suicide related risk unless they are affirmed or medicalized. That’s just false.5
You forgot to tell us there’s a raging debate among experts. That the science of how to treat gender dysphoria is far from settled. Many studies point to gender dysphoria having many different causes, which call for different treatments, but did you tell us this before sending our children into the most drastic intervention? And it’s already known, has been known for years, that many with gender dysphoria grow out of it6 or recover with explorative psychotherapy! It's already known that when psychological issues including OCD,7 Aspergers, more general ASD, trauma, anxiety, or distress are present, gender dysphoria sometimes8 goes away when these issues are treated or addressed. (It has been “observed that the desire to transition is often connected to an attempt to distance” from “psychic pain.”9) And these psychological conditions are common among the adolescents, including ours, currently developing gender dysphoria. Why didn't you mention this? Why did you instead send our kids straight to the path of lifetime drugs, surgeries and sterility?
We didn't find some secret cache of information no one knew about, or unveil some conspiracy theory in the hidden depths of the internet. We read the evidence available in broad daylight. We read the literature you quoted,10 went to the experts you sent us to. We asked them for outcomes, noticing that for treating young people, most quote the Dutch model studies, which only included stringently screened kids with childhood onset (“lifelong extreme”) gender dysphoria.11 Or they quote studies of mature adults, not like our growing and changing kids whose developmental maturity likely won't be reached before 25. The outcomes of the protocols being used to treat young people being medicalized right now? In particular, our children's rapidly rising adolescent onset cohort? No one can tell us. No one even knows how many stop treatment, in part due to the long honeymoon period, which can last 5-6 years, or maybe 8-10 years. (Many of the medical consequences remain for life, e.g., atrophied or removed organs.) Some who regret and then stop treatment report massive distress, having been misinformed before they medicalized, now realizing other mental issues were involved, and deeply, fervently wishing they had first explored.
We truly want to affirm our children, what parent doesn’t? But of course, you know we can disagree with the affirmative model and still affirm our children. “There are many ways that parents can provide support for their child which include: affirming them as a unique and valuable person and as a loved member of the family; supporting their emotional and financial needs; supporting them in pursuing their interests; supporting them to develop the skills needed for self-sufficiency; supporting their choices of gender nonconforming clothing and interests; supporting their exploration of their identity; and supporting them in their critical thinking skills. Parental support is multifaceted and should not be oversimplified into a binary of whether a parent agrees or disagrees with a specific medical course.” 12
In comparison to what affirming our children means, we learned the affirmative model starts with claiming: “If a mental health issue exists, it most often stems from stigma and negative experiences rather than being intrinsic to the child.” This is a huge assumption about our kids’ mental health issues, made before even meeting them. Following the references to get more information13 leads to a reassertion that mental health issues are likely caused only by prejudice and gender mismatch distress, for which we could not find evidence, and an additional claim, that mental health intervention is not seen to alter gender-body mismatch. It didn’t take much digging to find research where mental health intervention did help some resolve gender dysphoria.14 Maybe this is why the American Academy of Pediatrics misrepresented the contents of its citations to justify adoption of the affirmative model and apparently does not want its members to see evidence to the contrary?
Similarly, the WPATH “standards of care”, upon which everyone relies for procedures, also recommends psychotherapy in accord with the affirmative model,15 as part of its quick route16 to medicalization. A rigorous guideline review17 found these “standards”18 inadequate as well. That is, the affirmative model and its accompanying quick medicalization do not appear to be on strong footing. We suspect better supporting evidence is not out there or it would be quoted instead of all of these low and very low quality certainty studies. And many of your colleagues are pointing these issues out. We've learned experts in other countries (UK, Sweden, Finland) have been conducting thorough reviews and, based upon the lack of supporting evidence, are now limiting medicalization for young people (e.g., those under age19 25 in Finland). Why didn't you tell us?
And why didn't you tell our kids? Sure, they’ve heard otherwise online, but you’re the grownups, the experts, in the room. Perhaps you subscribe to the idea that one must also “affirm” young people by agreeing with their self-diagnoses, because (someone has claimed that) any other response denotes a lack of respect for them, an attack on them? Have you adopted this philosophy? If so, why? And if so, are you medicating based upon self-diagnosis for any other condition? Is this best practice for medicine? Did that approach work for opioids?
Even if you didn’t know before, now you do. About the affirmative model’s unsupported assumptions about mental health issues and how the AAP20 misrepresented studies to justify adopting it anyway. About the dangers of medical intervention and its uncertain mental health outcomes. About the exploratory model’s ability to help some people. That the science isn't settled.
In the past, your profession pushed lobotomies and thalidomide and opioids. Repressed memories. Now, again, great harm is being done.
This is your moment.
We're asking you to get informed, read your literature and your studies, and protect our children. Their bodies, their mental health, their ability to ever become parents themselves. This has been called an experiment on children...but no one is even keeping track of outcomes. It’s not even an experiment.
“The only thing necessary for the triumph of evil is for good men to do nothing.”
It’s way past time for you to stand up. And speak up.
The UK NICE Puberty blocker evidence review and Hormones evidence review both find evidence is “very low quality” certainty (one summary here). Sweden found limited evidence, the US Endocrine society GRADEd the evidence behind almost all their recommendations (all but 3) as “low quality” ⊕⊕, “very low quality” ⊕ or not even graded. A recent large study, once corrected, found no benefit of hormones and surgery.
“LHRH agonists should be reserved for the most severe (paraphilic) sexual offenders because LHRH agonists frequently lead to a complete decrease of all sexual behaviors, thereby interfering with fundamental human rights." (source)
And then there are also surgeries, double mastectomies which are offered starting around age 13 for some and “bottom surgery” (a euphemism for removing our children’s reproductive organs).
That hasn’t prevented some from mentioning suicide a lot (also dangerous for impressionable young people!), often carefully saying “associated.” Rain and open umbrellas are “associated” but you don’t make rain fall by opening your umbrella.
Most (~80%) with (clinically diagnosed) childhood onset gender dysphoria grow out of it, although mind-body mismatch can be prolonged with social transition. And those put on puberty blockers tend to have it persist. It is not known when gender identity “sets” in general or even if it does.
There is no reliable test to determine who will or will not recover from gender dysphoria with time or exploration or medicalization.
"We have observed that the desire to transition is often connected to an attempt to distance the person from the psychic pain related to internal and/or external traumatic experiences. “ Can also apply to adults.
In addition to studies often being about a different group (age, age of strong onset, biology, history, other mental health conditions), so that their conclusions are not relevant for our kids, we learned that most studies are low quality because they’re too short term and thus only measure people in the honeymoon period, and/or lose huge fractions of participants, and/or are biased (e.g., here), and/or have mistaken conclusions. Also, sometimes limitations mentioned within a paper are not reflected either in its abstract or in how its results are quoted.
For that protocol, outcomes after more than 2 years were only published for one participant, who now has “dissatisfaction and shame about his genital appearance.”
"if there is pathology, it more often stems from cultural reactions (e.g., transphobia, homophobia, sexism) rather than from within the child" (here) and “none of the existing research supports the premise that mental or behavioral health interventions can alter gender identity”(here). That’s the “model” for the source of mental health issues and the relevance of mental health intervention.
The whole point of the exploratory model, after all, is to understand and support where the distress is coming from; and some discover their mind-body distress comes from something else. An observation about not exactly the same issue, is that it has been seen that “Medical gender reassignment is not enough to improve functioning and relieve psychiatric comorbidities among adolescents with gender dysphoria. “
Psychotherapy is suggested for “exploring gender identity, role, and expression; addressing the negative impact of gender dysphoria and stigma on mental health; alleviating internalized transphobia; enhancing social and peer support; improving body image; or promoting resilience.“
The Dutch Protocol, whose outcomes are cited to justify medicalizing young people, had strict inclusion criteria, including lifelong extreme gender dysphoria. WPATH’s version of this requirement is instead “a long-lasting and intense pattern of gender nonconformity or gender dysphoria (whether suppressed or expressed)”. (Is that even falsifiable?) It certainly doesn’t seem to take into account what is known about either childhood development or how memories work.
It found “although WPATH SOCv7’s stated overall goal is ‘to provide clinical guidance for health professionals’[30] it contains no list of key recommendations nor auditable quality standards, yet is widely used to compare procedures covered by US providers[60]” and also notes “WPATH SOCv7[30] cannot be considered ‘gold standard’.” Five reviewers said do not use, one said use only if modified and none said to use as is. Hardly a resounding vote of confidence! Let’s hand our children over to them anyhow, shall we?
The WPATH standards of care (SOCv7) are “practice guidelines, not standards of care”; “Unlike standards of care, which should be authoritative, unbiased consensus positions designed to produce optimal outcomes, practice guidelines are suggestions or recommendations to improve care that, depending on their sponsor, may be biased. ”
In addition to young people rapidly developing and changing at these ages, you certainly also know adolescents and young adults are deemed too young to assess long term risks at 16 or 20. Smoking, drinking, right? You’re pediatricians and experts in young people, right?
This article needs to be printed out and left in every pediatrician's waiting room.
Thank you for publishing this article! We are meeting more and or doctors are opening their minds to this perspective but change is slow and the clock is ticking and for our kids. Share widely!