The number of trans-identified youth is spiking. But so is the number of kids with autism. And with ADHD. The increased number of children of these diagnoses (and others) raises obvious questions.
Was this experience always common, but we weren’t looking? Is the rise driven by an environmental change? Is there an element of social contagion to the spread?
It’s easy for both supporters and opponents of youth transition to tackle the topic solely in terms of questions about gender. But, as Suzanne O’Sullivan chronicles in The Age of Diagnosis, it is common for medical and psychiatric diagnoses to rapidly balloon outward, sweeping in milder and variant cases. This is important context to keep in mind when discussing the rapidly changing protocols for the treatment of children and teens who identity as transgender.
Examining why specific diagnoses get diffuse can help us make sense of the dynamics in youth transitions. What’s more, it might give advocates on both sides space for a more fruitful debate.
Defining a Diagnosis
O’Sullivan does not address youth gender medicine in her book, focusing chapters on Lyme, Long Covid, autism, and depression. Still, the debate over youth transition parallels these less polarized diagnosis debates.
The dynamic that O’Sullivan describes tends to follow a pattern. Doctors identify a pathology with severe, life-constraining consequences. They attempt to find more patients and chart what they have in common (both biologically and phenomenologically), eventually working their way to a definition of the ailment. The doctors may or may not have a biological model of why this is happening. The condition could be described by a blood test or a tissue analysis, but might be a checklist of “if you have four or more of these behaviors…” The definition acts as a rallying point for future research and gives patients and caregivers a way to connect to each other.
Sometimes fighting for inclusion in a diagnosis is urgent and lifesaving, as when activists from ACT UP worked to get women’s distinct opportunistic infections added to the definition of AIDS. While men with AIDS more often got Kaposi’s sarcoma, women got impossible-to-clear yeast infections and pelvic inflammatory disease. Male-typical AIDS set the pattern for the official diagnosis, so men could enter clinical trials of new drugs and be fast-tracked for disability, while women were excluded from care. As one ACT UP sign read, “Women Don’t Get AIDS They Just Die of It.”
Sometimes, as a diagnosis gains traction, people with milder or variant experiences of the underlying condition may feel like they have something to gain from being included. Someone may find the strategies (or the stimulants) offered to people with ADHD helpful, even if they might not have met the standard for earlier versions of the disorder. A mental health technique can be helpful for a broader range of people than it was developed for, much like a curb cut. Some people with milder or variant experiences of a disorder may push for a formal diagnosis or simply self-diagnose to place themselves under the umbrella. Another person may be glad to join a support group and chat with other people who share the same frustrations. Or as Rachel Bloom wrote, tongue in cheek, in the song “My Diagnosis” for My Crazy Ex-Girlfriend, “Doc, prescribe me my tribe, give me my throng / Tell me that this whole time I’ve belonged.”
The Benefits and Costs of Inclusion
O’Sullivan isn’t against inclusion tout court, but she’s very attentive to who gains and who loses. When a diagnosis expands, people with milder versions of the disorder can quickly become the vast majority of patients nested under this definition. People who consider themselves “on the spectrum” vastly outnumber people with nonverbal autism. When the definition of Ehlers-Danlos syndrome was broadened to include people without a known genetic variant, the new population of patients quickly made up eighty to ninety percent of all cases. O’Sullivan is attentive to cases where the prevalence of the disorder (as originally described) is not increasing, but more and more people with mild or variant versions are identifying with the diagnosis.
A growing community of people clustered around a disorder has some real benefits. The more people there are, the more advocates to lobby for research or to raise awareness of accommodations or to offer solidarity to each other. But if the needs of the people described by the original diagnosis are different than the people who now make up the vast majority of people under the new umbrella, the people with the most severe needs may be crowded out of the conversation.
For Emily May, a mom to a nonverbal autistic daughter, advocates for autistic inclusion were occluding her child when they opposed the term “severe autism” or said it was false and stigmatizing to say autistic children would “never hold a job.” The umbrella of autism was broad enough to cover people with very different needs, prognoses, and priorities. May didn’t oppose the goals that people with milder autism held, but since her daughter could not advocate for herself, she was vulnerable to being erased. What had been central to the definition was now pushed to the margins. She and her daughter might benefit from redividing the definitions, so that groups with divergent needs are called by different names.
Drawing the line between “real patients” and overdiagnosis is always controversial. The political polarization around transgender issues and gender medicine makes it even harder to get people to look at the facts on the ground. Still, it might help to see the issue as less singular. The pressure to expand a diagnosis beyond its initial definition is natural, and it doesn’t require villains. There don’t have to be any bad actors for things to get out of control quickly.
The Development of Gender Medicine
The science of “youth gender medicine” has been in a state of constant revolution. Present-day practice claims credibility from studies with completely different populations and protocols than those in use today. The research that makes the best case for youth transition is based on the Dutch Protocol, a plan for medical transition in the Netherlands in the 1990s. The program of the Netherlands clinics is today rejected as unjust gatekeeping by American doctors.
In the Dutch Protocol, patients saw two mental health providers for comprehensive assessments, one of which spanned months or years of mental health counselling. At Planned Parenthood, patients can get hormones after an initial 30-minute appointment. In a Reuters investigation of 18 clinics specializing in youth gender medicine, none followed “anything like the months-long assessments” of the Dutch Protocol, and half said it was routine to offer children hormones at their first appointment.
Even people who are confident that some children need medical support to transition should be concerned about expanding protocols and patient populations. The dynamic O’Sullivan describes makes it likely that even a real, promising treatment and community can be warped and recentered to serve the population that needs it least.
Clinical psychologist Laura Edwards-Leeper favors supporting youth through gender transition, but only when the children fit the core diagnosis, the ones whom she believes she’s more likely to help than harm. In an interview with Leor Sapir from City Journal, Edwards-Leeper was carefully modest in her claims. When she sees a patient who doesn’t fit the more rigorous diagnostic criteria, she doesn’t need to decide if they are or aren’t “truly” trans. She sticks to what she knows: “What I do is tell the parents and the adolescent that these other factors might have influenced their child’s sense of gender, and that, based on my experience, kids who do well after medical intervention are different from their son or daughter.”
One alternative O’Sullivan endorses is holding diagnoses and identities lightly. If a coping mechanism that helps people with anxiety disorders helps you, you don’t need to decide if you’re actually anxious in order to use it. If it helps for now, that’s fine. If the situation changes, you can set it aside without feeling like you’re endangering your own identity or membership in a community if you no longer feel anxious. O’Sullivan wants to avoid patients narrowing their sense of their own future by being reluctant to become well. If you don’t want to dress in a feminine way as a girl, that’s fine, but you don’t necessarily need any follow up questions from adults about what this could mean.
Diagnoses are our good faith attempts to describe the world as it actually exists. The further they are from stark biological facts, the more we should expect them to imperfectly image the real world. That’s not a reason to throw them out—you’re often better off with a low-resolution map than none at all. But we have to be honest that our best faith efforts can harm both the people ultimately given false positives and false negatives under our rubric. It requires frequent reevaluation to beat the bounds of our model, to decide when it should expand, contract, or split. Gender medicine can’t opt out of this ordinary scrutiny.
