Caring for Transgender Youth
It looks like any waiting room: minimal art on the walls, children’s toys and playthings scattered about, plastic chairs, the ubiquitous TV. But what goes on beyond the reception area for Nationwide Children’s Hospital’s THRIVE program is anything but generic. The acronym stands for Team-driven Healthcare that Respects Individuals and Values Emotions, and it stands at the forefront of medical research in the burgeoning field of treating transgender youth.
Equally ordinary is the office of psychiatrist Scott Leibowitz, THRIVE’s medical director of behavioral health and gender and sex development. Decorated with an abundance of books, papers, chairs and an oversized desk, the setting conceals the man’s growing national reputation. The only hint that his patients and their families are dealing with the physical and emotional challenges of gender dysphoria—the conflict between one’s gender identity and one’s biological sex—is a drawing on the filing cabinet. A disembodied arm and hand point accusingly at a frowning child in a pink box labeled with the female symbol. The word “STAY!” is circled in a black cartoon bubble.
“So many kids who come here look at that picture and say, ‘Oh my gosh, that is me,’” Leibowitz says.
The number of youth who are questioning their gender is growing. According to UCLA’s Williams Institute, which specializes in research on lesbian, gay, bisexual and transgender issues, one in 137 American teenagers identifies as transgender, if asked. Since 2000, transgender-affirming surgeries have increased fourfold, sparked in part by the Affordable Care Act, which banned discrimination on the basis of gender identity, paving the way for coverage by insurance companies. And in recent years, youth gender clinics in the U.S. such as THRIVE have grown from just a handful to about 40, although exact figures vary.
Leibowitz is a leader in the growing field. His ebullient personality, like a big kid himself, belies his eye-popping résumé detailing a career that spans more than a decade.
As co-chairman of the Sexual Orientation Gender Identity Issues Committee for the American Academy of Child and Adolescent Psychiatry (AACAP), he helped define best practices in treating mental and developmental challenges in gay, lesbian, bisexual, gender-nonconforming or gender-discordant youth.
He was instrumental in creating competency-based educational and assessment resources for the Association of American Medical Colleges. Due in part to those efforts, “gender identity issues are now being addressed and included in medical school curricula,” he explains.
As a key player in the World Professional Association of Transgender Health’s Global Education Initiative, he is on the revision committee for the eighth edition of the Standards of Care, a bible of sorts for treating the transsexual, transgender and gender-nonconforming community.
He and other committee members of a Substance Abuse and Mental Health Services Administration and American Psychological Association taskforce helped discredit conversion therapy—the practice of trying to change an individual’s sexual orientation through psychological or spiritual intervention. The taskforce also highlighted the harm that conversion therapy can do, which, research has shown, includes a higher suicide rate among transgender youth. “We also came up with alternative interventions,” says clinical psychologist and longtime colleague Laura Edwards-Leeper, assistant professor in the School of Professional Psychology at Pacific University in Hillsboro, Oregon.
Leibowitz also teaches at Ohio State University’s College of Medicine, contributes to numerous professional journals and textbooks and serves as an expert witness in court and before legislatures, which often is a contentious process. An in-demand speaker who travels both nationally and internationally, he also makes a point to interact with the transgender community wherever he goes. “Unfortunately, being transgender is still stigmatized in some cultures,” he says. “In Japan, for example, it is considered to be a psychiatric disorder.”
As Leibowitz often says, there is no one-size-fits-all model when it comes to gender identity. “This is a highly complex process that differs with every individual,” he says. Children, in particular, represent a special challenge. “They have no control over how their parents will react to them, nor do they get to choose their school or living environment.”
“Scott crosses all the aisles,” states neuropsychologist John Strang, the director of the gender and autism program at Children’s National Health System in Washington, D.C. “He reaches out to others in the fields of endocrinology, surgery and neuropsychology,” attending their various symposia and meetings. “Because of his breadth of knowledge and connections, he’s helped many [gender development] programs develop partnerships among subspecialties.”
“He’s a dynamo,” adds Atlanta child and adolescent psychiatrist Sarah Herbert, co-chair of the Sexual Orientation and Gender Identity Issues Committee for AACAP. Now in her 70s, she met Leibowitz when he was still training at Boston Children’s Hospital. “Even then, he had a wonderful way with young people,” she adds.
Helping Families Manage the Passage
Beth Grandi of Newton, Massachusetts, knew very early that her 8-year-old wasn’t like other little girls. “Ever since he was little, C.J. felt he was a male,” Beth says. “He never struggled with the decision of who he was.” Even as a kindergartener, he wanted a boy’s haircut.
Grandi sought out the expertise at the gender management service program at Boston Children’s, one of the world’s groundbreaking facilities in the care of gender identity and youth. There, she met Leibowitz, one of the hospital’s rising stars.
“He understood what C.J. was going though and was able to go to a place that allowed C.J. to open up,” Grandi says.
“A lot of what I do is through play therapy,” explains Leibowitz, taking out a box of toys and showing a visitor a pink-and-blue-themed game of Life. In a single day, he might be playing Barbies with an 8-year-old, listening and helping a middle-schooler navigate lunchtime politics, having a deep discussion about “sex, drugs and rock ’n’ roll” with an older teen.
“When teenagers say, ‘I am transgender,’ it can mean a lot of different things,” he continues. With adolescents, especially those seeking to start irreversible treatments, “understanding how their gender identity fits into the context of their own evolving sense of selves” can be not only crucial, but life-changing.
When C.J. was in fifth grade, “he told Scott that he wanted to be called C.J., not his given name, Caroline, by his family, friends and at school,” his mother says. These discussions gave C.J. the impetus to open up and share his feelings with others. “So we went through the legal process and the educational system to change his name to Charles John,” she adds.
Even more complicated decisions were soon to follow. Pre-pubescent girls and boys essentially have similar bodies, “so we never consider medical intervention,” Leibowitz says. But many children entering their teenage years “display distress with changes in their bodies, which is pretty common among all kids.”
One of the field’s most controversial issues is if, when and how to begin hormone treatments and how early transitioning should progress. Providers differ on how much and even what kind of comprehensive assessment is needed prior to starting irreversible interventions.
Along with therapy, Leibowitz and Grandi opted first for puberty-blocking medications, a relatively recent option in the U.S. Puberty-blocking drugs delay changes that can be upsetting if they are not in line with one’s perceived gender. For younger adolescents it “prevents an irreversible puberty from happening, which itself can cause a significant amount of distress,” Leibowitz says. “It also allows more time to explore gender identity before things happen to your body that can’t be reversed.”
If the patient were to stop taking the medication, puberty would resume normally.
When C.J. was 14, he began testosterone treatments.
“Dr. Leibowitz always asked me about my ‘temperature’—how I was feeling that day, who my friends were and why I was drawn to some people and not others,” says C.J., now a sophomore at Newton South High School. Unlike other physicians, C.J. says Leibowitz “wanted to know how I felt about gender.”
“He’s always had support from his family and friends and even spoke about his experiences at his eighth-grade commencement,” says C.J.’s mom. “Others are not as lucky, I know.”
“There’s no one way for a parent to respond to their child being different,” Leibowitz notes. While some families may have difficulty dealing with the fact that a youngster may be questioning his or her gender, others are more accepting. “The point is to understand why the child feels this way,” Leibowitz says. “Parents’ views often change over time when they start to experience their child living more authentically and flourishing emotionally and psychologically.”
Finding His Calling
Initially Leibowitz, 40, planned on becoming a garden-variety child psychiatrist. Born in Smithtown, New York, he received a bachelor’s degree in human development from Cornell University and his medical degree from the Sackler School of Medicine’s American program of Tel Aviv University. He served residencies at the Zucker Hillside Hospital in Queens and the Long Island Jewish Health System at the Albert Einstein College of Medicine. “The dream was to finish my residencies, then get a fellowship and move to the West Coast, preferably San Francisco,” Leibowitz says.
But fate—and intellectual curiosity—intervened. “I heard about a new gender program in endocrinology at Boston Children’s Hospital,” he recalls. Officially known as Disorders of Sex Development and Gender Management Service, the program—which also is affiliated with Harvard Medical School—was the first multidisciplinary clinic of its kind. Along with prescribing HRT, the program also incorporates the disciplines of urology, clinical genetics, social work and psychology into its practice. “As a gay man who has a sense of what it means to be marginalized and bullied during childhood and adolescence … I was interested in LGBT issues,” Leibowitz says. By then he had met and collaborated with Edwards-Leeper, who at the time was also involved with the groundbreaking clinic. So Leibowitz hopped off the San Francisco trolley and on to a two-year fellowship at Boston Children’s Hospital.
He stayed until 2013, almost six years, treating numerous patients, including C.J., and serving as an instructor at Harvard. “Scott arrived extremely eager to learn and get involved,” Edwards-Leeper says. “He immediately recognized the complexity of these cases and understood the need for thorough assessments, both physical and mental.”
While in Boston, Leibowitz also initiated the practice of recommending that adolescents write themselves a time-capsule letter before starting their hormone treatment. “I suggest that they write what their current priorities are, then seal it,” he says. Then, years later, they can open up the letter. “It would be fascinating to see their perspective on life,” and how it’s changed as an individual living in their affirmed gender, compared to how they felt in their birth-assigned sex. Along with personal insight, the letters provide valuable information on adolescent versus adult thinking “that can be helpful in future holistic treatment of these kids.”
Leibowitz had planned on remaining in Boston. “My partner at the time and I bought a condo there and my whole family lived nearby in New York,” he says. But he heard about a new clinic opening in Chicago “that offered improved access to care without as long of a wait list. The demand for care keeps growing, so getting timely treatment is a challenge.” Plus, his longtime collaborator, Edwards-Leeper, had decided to move to the West Coast. So he submitted his résumé to the Ann & Robert H. Lurie Children’s Hospital in Chicago “just to see what was out there,” and they offered him a position.
But by late 2015, Leibowitz was ready to move on again. He wanted to be at an institution that emphasized both quality mental health care and room to accommodate the growing numbers of vulnerable youth with gender concerns. While considering bigger cities such as Philadelphia, New York City and San Diego, he got an email from a recruiter at Nationwide Children’s. “My first thought was, ‘Columbus? Really?’” he confesses.
But a closer look at the recently established THRIVE clinic and its mission of providing a one-stop shop for providing a comprehensive assessments and a wide range of services, along with timely care, appealed to him. The fact that Nationwide Children’s was offering to create a new position specifically for him—medical director of behavioral health—sealed the deal.
THRIVE was established in 2013 by Rama Jayanthi, chief of urology at Nationwide Children’s Hospital. It was originally developed as a program to help children with gender questions, as well as children with complex urological conditions.
And while the program has been serving youths and their families with gender-related concerns since it opened, it broadened its reach in June by devoting staff and resources exclusively to assisting transgender teens. In the past four-plus years, close to 500 families of youth with gender-diverse identities have been seen at THRIVE. And the numbers are escalating.
Since his arrival at Nationwide Children’s in late 2016, “wait times to get into THRIVE have dropped from up to six months to about one to two months, despite the increase in patients,” notes psychiatric nurse practitioner Shane Gahn. “Scott has streamlined assessment and care plans, relieving patients and their families of the burdensome process of gaining access to care.”
“Scott has brought a whole new level of enthusiasm to the team,” adds THRIVE social worker Allison Whittington. “He’s energetic and passionate. It’s good to be able to pick his brain and get his thoughts on a situation,” such as how and when to initiate discussions on fertility preservation and family planning with patients and their families, including decisions as to whether patients might eventually want to have their own biological children. “It may sound odd, but these conversations help children identify with their parents and can strengthen family relationships.”
The benefits of such thoughtful counseling can be lasting. “It’s not easy being a teenager,” adds C.J. “Although Dr. Leibowitz left a while ago, his influence continues to help me handle my transition.”
Charting New Territory
“Historically, psychiatry pathologized transgender individuals, referring to them as ‘disordered,’” says Leibowitz. “This resulted in a great deal of distrust from the transgender community itself.”
Patients had to live as the other sex for a certain amount of time before being allowed Hormone Replacement Therapy (HRT), “which made transgender people feel as if they had to prove who they were to the provider.” Further complicating matters is that, in order to receive any kind of treatment, both parents and/or guardians had to sign a consent form for children under 18 years old.
Today Leibowitz and many of his colleagues have moved toward an affirmative assessment model involving the physician, the parents and the children as they explore various options through what he calls collaborative path-paving, which helps give youth—especially teenagers—a sense of managing their own destiny. It can also help build resilience and positive coping skills, as children are confronted with challenges such as bullying or being ostracized.
Through affirmative assessment, “parents achieve a greater understanding of what the child or adolescent is thinking and experiencing, and the child is getting to know themself as well,” Leibowitz explains. Rather than having a decision forced upon them, they are given the time and mental space to make it themselves.
But while “the patient population has exploded; the science hasn’t yet caught up with it,” he admits. “The field is in evolution right now.” The lack of a large body of evidence-based research “leaves room for interpretation as to what constitutes best practices.”
Another battlefield is cost. “It can be expensive,” notes Leibowitz. Based on physician estimates published in The Washington Post, costs for a female fully transitioning into a male can be $75,000 or more, while male-to-female transitioning can range from $40,000–$50,000. Costs for children and adolescents can be equally challenging. Puberty-blocking drugs can run up to $15,000 per patient per year, Leibowitz estimates. Otherwise, though, cost is difficult to predict—whether it’s for counseling or other services. “There is no single cost that we can say any one family incurs for their care,” he adds. “Each and every family is very different in terms of what they need. Not every youth and family needs every discipline or intervention. Clinic visits are billed to insurance and there is no one specific pathway or set of disciplines that is predictable for any child, adolescent or family since their behavioral health and medical needs vary greatly based on a number of individualized factors.”
Financial costs aside, the alternative to treatment and acceptance can be great. There’s plenty of evidence that LGBTQ populations can be affected by stigma, abuse and harassment in their communities and schools, leading to depression and even suicide. The National Center for Transgender Equality found in a 2016 study that 40 percent of transgender adults reported attempting suicide.
“For youth to thrive in schools and communities, they need to feel socially, emotionally, and physically safe and supported,” says the Centers for Disease Control website page that addresses lesbian, gay, bisexual and transgender youth.
When discussing transgender issues, “the terminology is tricky,” Leibowitz observes. “‘Transgendered’ is not a word.” One rule of thumb: Though it’s officially an adjective, the word “transgender” should never be used as a verb.
Here are a few more commonly used (and misused) terms:
Queer: While originally considered offensive, “queer” is now used as a catch-all term to describe a variety of LGBT identities. It is often used among gender nonbinary individuals—that is, identities that are neither exclusively masculine or feminine, a combination of both or neither. “More recent generations are reclaiming the term ‘queer’ and are very proud of it,” says Nationwide Children’s Whittington.
Real-life experience (RLE): While not all practitioners agree, the World Professional Association of Transgender Health’s “Standards of Care” suggests candidates for surgery and/or hormone therapy spend as long as a year living in their preferred gender role. This means they adopt the clothing, pronouns and personal names of their desired gender while maintaining their employment, attending school or volunteering in the community.
Hormone Replacement Therapy (HRT): HRT is intended to work on both physical and emotional levels. Biological females take androgens to help them develop secondary male sex characteristics, such as facial and body hair. Estrogen and anti-androgens are given to biological males to help change the distribution and arrangement of muscles, skin and fat and make them appear more feminine. Body hair also diminishes. Although it may take a month or more, bodies and brain begin aligning for many patients. “The first effect is the brain effect,” Fred Ettner, an Evanston, Illinois physician who works with people going through transition, told The Washington Post. For many, it’s a great relief: “They feel differently. They behave differently.”
Top surgery: Any gender-confirming surgery designed to alter the chest. Examples include a double mastectomy to create a flat chest or breast implants or augmentation.
Gender-confirming surgery: Designed to replace the outdated term “sex-assignment surgery,” this is any procedure that will better align the person’s body or face and gender identity. According to physician Ettner, only about 25–30 percent of transgender people opt for any kind of surgery.
Transition: The social, physical, emotional and medical aspects of moving from one gender to another. “It’s not just about transitioning; it’s about successfully transitioning,” says Leibowitz.