When Robert Garofalo, the head of adolescent medicine at the Ann & Robert H. Lurie Children’s Hospital of Chicago, gives his seminars for pediatricians on how to care for gender-nonconforming children and transgender youth, he always takes care to tell the story of a 6-year-old kid he calls Andrew. Andrew, born with male anatomy, likes to play with dolls and makeup, and since age 3, Andrew has identified as a girl. When Andrew was 4, a pediatrician waved off this behavior as “just a phase.”
Two years later, though, Andrew’s parents are beginning to wonder if they’ve been “oppressing” their child. They notice Andrew is happiest at home, where they allow Andrew to wear dresses. Out of the house, the 6-year-old is starting to withdraw socially and dread going to school.
Garofalo specializes in treating kids from what he calls marginalized youth populations, specifically HIV-positive and LGBTQ children, and Andrew’s story—a kind of composite story built from the real-life experiences of many of Garofalo’s patients over the years—serves as a cautionary tale for pediatricians about the dangers of responding dismissively or ambivalently when gender-nonconforming children and their families seek guidance. For many parents and kids, pediatricians’ offices are one of the first stops when a child displays non-conformity; many parents, naturally, direct their “so my son wears dresses” and “how should I handle my daughter telling me she’s a boy” questions to the same place they direct the myriad other “hey-what-should-I-do, is-this-normal” queries that invariably accompany parenting.
And for many of these kids and families, the pediatrician’s office will be the first place they get real answers and support as they work through these questions. It’s where they can learn about the many kinds of gender expression, social transitioning, and medical treatment options like puberty blockers and eventually hormone therapy—or at least get a referral to another clinic or specialist who might offer those kinds of support. But for others, the pediatrician’s office can be a dead end of sorts, and in some cases even a place of confusion or shame.
Studies have shown that for gender-nonconforming young people, a group already at higher risk for depression and suicide, support from the people around them significantly lowers distress levels and depressive symptoms—and while research has mostly focused on support from families and parents, affirmative, supportive care from physicians can also be vital. Youth gender specialists across the country believe one of the most common obstacles standing between kids with gender dysphoria or gender-identity questions and the care that would set them up for their best possible health outcomes are unhelpful primary-care pediatricians.
Sometimes, gender-nonconforming kids and their families hit these dead ends because a doctor believe their behavior to be immoral or simply “a phase.” In more conservative communities, it might be harder to find a physician willing to call a child by their preferred name or pronoun. Ximena Lopez, an endocrinologist and the founder of the Gender Education and Care Interdisciplinary Support (GENECIS) program at Children’s Medical Center Dallas, says this “happens all the time.” Lopez has seen many patients whose primary-care pediatricians (PCPs) have insisted on addressing them by their birth names and the pronouns of the gender they were assigned at birth. Those patients, as they grow older, “do not want to see a PCP, period, or do not want to go to the ER, period,” she says, “because they know that they'll be misgendered or feel embarrassed.”
In some cases, routine questions about kids’ and young adults’ lifestyles and health regimens can turn into moments of shame and judgment; 26-year-old Brit Cervantes, for example, who is trans, says he avoided going to physicians’ offices for a long time after a doctor’s appointment for a knee injury while he was transitioning turned into a lecture from a physician’s assistant on why “girls aren’t supposed to be on testosterone.” Today, Cervantes works as a program coordinator for the Gender Diversity Program in the pediatrics department of the University of California, Irvine. Part of his job is to assess the trans-friendliness and gender-dysphoria knowledge of pediatricians’ offices and help families find the right pediatric care for their gender-nonconforming kids.
A major reason why some physicians fail to help kids with gender dysphoria is simply because they lack the training or knowledge to do better. A study conducted in 2017 by researchers from the Children’s Hospital of Philadelphia and the Philadelphia Department of Public Health found that less than 70 percent of pediatric primary-care doctors in the Philadelphia metro area with experience caring for LGBTQ youth said they knew where to refer patients with gender-identity issues; less than a quarter of pediatric primary-care doctors who had no experience caring for LGBTQ youth knew of clinics or specialists where they could refer gender-questioning or gender-dysphoric patients. And 86 percent of the pediatricians surveyed said that in general, when it came to gender nonconformity, they needed more training.
“I think pediatricians and medical providers in general feel wary and scared, just not confident,” Lopez says. “I think most want the best for their patients, but their lack of training makes them feel unprepared or not ready to talk with families.”
Lopez adds that the American Academy of Pediatrics, often considered the leading authority on best practices for pediatric physicians in the United States, is working to educate primary-care pediatricians to be affirming—that is, “to educate parents and families to accept and support their child, or allowing their child to explore their gender identity, because there is research to indicate that that’s a good predictor for mental health outcome.” Garofalo gave his presentation on care for gender-nonconforming and transgender youth at an AAP conference in the fall of 2017.
According to Lynn Hunt, the chair of the AAP’s Section on Lesbian, Gay, Bisexual, and Transgender Health and Wellness, an official AAP policy statement has been in the works for some time. Additionally, the AAP has in recent years released statements in support of transgender children, adolescents, and young adults and has partnered with organizations like the Human Rights Campaign to publish educational documents on promoting health and wellness for transgender kids.
On some level, of course, perhaps it shouldn’t be surprising that there’s not much of a blueprint for primary-care providers at this point. While the number of cases of gender dysphoria reported to pediatricians is rising (and some medical schools—Garofalo names Northwestern, where he teaches, and Harvard as examples—are beginning to teach care for gender-nonconforming kids as part of their general curricula), as Hunt points out, the proportion of children who identify as something other than the gender they were assigned at birth is still a fraction of a percent. And medical schools, as Garofalo puts it, “have to cover a tremendous amount of things.” Still, the fact remains that a growing population of children’s needs are not being met simply because doctors don’t yet know how to meet them. “It's getting better, but a lot of people just say, ‘Well, I don't know much about this,’” Hunt says, “and then they step back from it.”
Gender-dysphoria and transgender-issues training for pediatricians seems especially critical in states like New Mexico, Arizona, Utah, Nevada, Wyoming, Idaho, and Montana, where, according to a 2014 map released by the Human Rights Campaign and the medical journal Pediatric Annals, clinical-care programs for transgender and gender-nonconforming youth are so few and far between that they’re virtually inaccessible to most. There are, of course, some resources available: “If somebody in a rural area or a small town didn’t know who to turn to, they could contact the American Academy of Pediatrics. Somebody from the section on endocrinology, or the section of LGBT health and wellness, or the section on adolescents,” Hunt says.
Garofalo believes an official set of guidelines from the American Academy of Pediatrics will benefit young patients, in places like these and elsewhere, and not just because more pediatricians will know how to care for these children properly, but because AAP guidelines mark an important first step toward standardizing the process of assessing and treating these patients in doctors’ offices across the country. “Young people deserve access that doesn't require getting in a car or getting on a plane and traveling for four to eight hours,” Garofalo says. “But this community doesn’t just deserve access to care; they deserve quality care.”