August 8, 2012
At 20, Norman Spack learned the power of hormones. By adjusting the prolactin and thyroid levels of tadpoles, Spack found he could prompt metamorphosis; he watched from a bench in his research lab as they grew legs and their gills were absorbed and replaced with lungs.
Forty years later, a patient named Mark walked into Spack’s adolescent medicine clinic in Chestnut Hill and told Spack he wanted to change. He was male, he told Spack, but his body was a woman’s.
Back then, in the 1980s, many doctors might have seen Mark’s predicament as a mental-health problem: someone with a desire that challenged the status quo of society and gender must need a psychiatrist, not an endocrinologist. But Spack approached the personable young man in much the same way he had approached his research on newts: Mark had a practical problem, and Spack had the tools to address it. “I had given plenty of testosterone to hypo-gonadal males,” he recalls. “It just seemed to me you’d give the same amount you’d give a guy.” And that’s what he did.
Now nearing 70, and at the edge of retirement, Spack has gone on to change how transgender kids are treated. When he founded the Gender Management Service, or GeMS, at Boston Children’s Hospital in 2008, it was the only pediatric clinic of its kind in the US. Adapting protocols developed by doctors in the Netherlands — the “Dutch masters,” he calls them — Spack was one of the first doctors in the United States, certainly the first based at a major urban academic children’s hospital, to try to tackle this problem, treating kids as young as nine with hormone blockers to delay puberty.
Today, clinics for transgender kids in British Columbia, San Francisco, Los Angeles, Chicago, Denver, Minneapolis, New York, Hartford, Providence, and Washington, DC, have either been created or expanded. And in almost all of these places is a doctor that Spack has trained, mentored, or guided.
“As centers like Norm Spack’s are starting up in a number of places, a lot more pediatricians and a lot more child psychiatrists will be educated about this issue and will be able to refer children,” says Laura Erickson-Schroth, a psychiatry resident at NYU and a former student of Spack’s who is helping to set up a clinic like GeMS in New York. This is both a result of Spack’s work and a sign of the times. As a result, “as a society, we’re sort of beginning to accept that gender and sexuality are not straightforward and simple.”
Spack, for one, understands transsexualism as a straightforward medical issue. “This is two conditions that pediatric endocrinologists treat all the time,” Spack says. “One is precocious puberty. The other is delayed puberty. So for the transgendered, it’s the precocity of the puberty they never wanted, and a delay of the puberty they affirm.
“Gender dysphoria is a condition that can be treated rather easily,” he says. “You don’t need to be a rocket scientist to take care of a transgender patient.”
For decades endocrinologists have been treating transgender adults with cross-gender hormones: testosterone if you’re female-to-male, and estrogen if you’re male-to-female. This is nothing new. But for kids like Spack’s patient Justine (names have been changed to protect the identities of the children and their families), who, from the moment she could speak, “told us she either wanted to be a girl or she was a girl,” as her dad describes it — kids who can articulate their gender identity, without a shred of doubt, from the time they are toddlers — waiting until after puberty means years of psychological agony; girls develop thick muscles and deep voices, and boys grow breasts and hips and get their period. The risk for self-harm during this time is enormous; among Spack’s patients, one in five has engaged in cutting or other self-mutilation, and almost 10 percent have attempted suicide. Waiting to intervene until after puberty also means playing catch-up physically, with more medical interventions and more extensive surgeries required to “pass” in the right gender as teenagers and young adults.
Unlike the cross-gender hormones that kids may start later as teenagers, the effects of the puberty suppressors are entirely reversible: adolescents who stop taking them will immediately begin to experience puberty in their birth sex. The idea is to buy them some time. Time to grow up, time to develop what Spack calls “clarity and certainty” without the stress of their unwanted puberty bearing down with increasing intensity every passing day.
For the first nine years of his life, Aileen Smith’s son hated his name. It’s a girl’s name, and not only couldn’t he bring himself to say it aloud, he couldn’t even be friends with girls who shared it. When he first went to see Spack, the boy — who later named himself Kyle — had a flat chest and lanky body. But he was only nine. That would soon change.
Spack told them that Kyle would get his period within a year and a half. He’d also start developing. He would likely be a C cup.
You can almost hear Kyle’s breath catch in his throat as his mom recalls this visit. “Geez,” he whispers. He sinks deeper into the ottoman where his legs are folded underneath him.
Now 15, Kyle is a sensitive young punk kid with a floppy brown Mohawk, a blue lip piercing, and a set of rainbow rings around his neck. He is happy and easygoing, well-liked at the lefty private high school where he’s just finished his freshman year, and close with his family. When he first met Spack, though, he had for years felt so uncomfortable in his own skin, that he developed paralyzing anxiety; he refused go to school, lest he’d have to talk to someone, or worse, introduce himself.
Kyle only recalls his first appointment in bits and pieces. Many memories of his life before age nine are this way. He can’t — or won’t — remember them. But he does remember looking at Spack as “some kind of god” when he told him that there was another way. And he does remember when Spack told him that without intervention he was going to be, physically, a well-developed young woman within the year.
“Shit flew off the hook,” Kyle says.
Doctors and other providers working with transgender patients typically “have some sort of personal connection, whether through their politics, or they were in the LGBT community already,” says Spack’s former student Erickson-Schroth. Spack, on the other hand, “came to this by accident. He just saw there was something wrong in the world, and he did something.”
Spack grew up in a conservative Jewish community in Coolidge Corner, where his father ran a Hebrew school and was devoted to their local synagogue. Although as a kid Spack looked up to his dad’s best friend, their family physician, he never seriously considered medicine as a career until his senior year of college.
It was an accident, really, dumb luck that led him to a senior biology thesis that would set the course for the rest of his career. A student before him had been working with newts and other amphibians, and an ecology professor invited Spack to continue the research the other student had started. And so Spack sat on that research lab bench, watching the tails of these aquatic animals shrink and their legs grow for their new life on land.
The parallel isn’t lost on him: he chuckles now to think of himself as a college student, using many of the same hormones he uses now, to much the same effect.
Spack went on to medical school, and then post-graduate training in adolescent medicine and endocrinology. And among a certain subset of the endocrine patients he saw in his adolescent medicine clinic, he discovered something unsettling: “Sometimes there was a kind of conspiracy between the doctors who cared for them years before, and the parents,” says Spack. A conspiracy “to not tell what had happened to them.”
As many as one in 100 babies are born with genitals, chromosomes, hormonal systems — or some combination of these — that don’t fit the standard parameters for male or female. Today, treating kids with what are now known as “disorders of sexual differentiation,” or DSD, is one of GeMS’s specialties, and Spack routinely helps families decide whether to raise their child as male or female and weighs in on whether and when surgery is required. In making this decision, they consider “diagnosis, genital appearance, surgical options, need for lifelong replacement therapy, potential for fertility, views of the family, and, sometimes, circumstances relating to cultural practices,” Spack and his colleagues wrote in a landmark 2006 consensus statement in the journal Pediatrics on the management of intersex disorders.
But these guidelines were developed partly in response to increasingly vocal activists like Intersex Society of North America founder Cheryl Chase, who as an infant had her clitoris surgically shortened. Before people like Chase began to speak up in the early ’90s, parents of these kids — even babies who were unambiguously sexed except for a particularly small penis or a large clitoris — were often pressured into sex reassignment and early genital surgery to make their infants appear more “normal.” In some cases, the condition was treated as an emergency, and parents were not even consulted until after the surgery was over.
By the time Spack began his adolescent medicine practice, it was not uncommon for him to meet teenagers who had never been told that these surgeries had been performed on them as infants.
“In the days before the computer, you could seal medical records,” Spack recalls. “You could literally control that information.” But one of the reasons Spack was drawn to working with adolescents in the first place was that he liked to have independent relationships with his patients — developing trust with teenagers gave him a “direct line” to them that bypassed their parents — and he felt strongly that these kids needed to know what had happened to them.
“This was in an era when chromosomes were so important,” says Spack. “If somebody’s chromosomes didn’t match the way they were raised, many parents didn’t want the kids to know.” For instance, he saw young women who “never knew that they were born with a male set of chromosomes. There were a number of circumstances where I would tell them and make them understand how meaningless their chromosomes were.” The parents feared that the information would “do something to their gender identity,” but Spack consistently found that it didn’t.
While he worked with young intersex patients during the day, at night he volunteered one evening a month on a medical outreach van with the organization Bridge Over Troubled Waters. Here he encountered members of the LGBTQ community professionally for the first time. The “Bridge kids” were hustling for sex, some of them in drag bars, dressed as women.
Spack wasn’t sure whether they were gay, transsexual, or just runaways doing what they needed to do to get by.
“I was naïve,” he says now. “I thought that all the kids I saw in the streets were runaways. And I had been told about the rules about runaways, like that they could be housed for three days without calling the parents. But one of the street workers said, ‘They call them runaways. These kids are throwaways. Our goals aren’t to get the kid home. Home is not a safe place.’ ”
His 10 years working with Bridge kids left a lifelong impression on Spack, who is acutely aware of the “kind of ideal world” that GeMS selects for when it screens its patients. “Both parents have to agree, and you have therapists who have weighed in, good people you trust.”
This, he knows, is sadly uncommon. Even transgender children with one supportive parent, he says, are “one parent away from being a Bridge kid.”
For Kyle Smith at age nine, the first two of GeMS clinic’s three requirements to begin puberty blockers were easy: extensive psychological testing confirmed that he had a “strong and persistent” desire to be a boy, and ongoing mental-health counseling was also covered: he’d been going to therapists for years. But the third requirement — support of both parents?
“Fathers often do come around a little later,” Aileen says of her husband. “Medical things are so hard. He was supportive, but he was saying, ‘Let’s see. This could be a phase. How do we know?’ ”
For Kyle at that first appointment in Spack’s office, the stakes couldn’t have been higher. “He walked up to his dad, and looked at him as if he was like a teenager, but he was only a little boy,” Aileen recalls. “He must have been thinking, ‘I didn’t come this far to be told that I have to leave and not get help.’ He said, ‘Dad, I need help. You need to help me. You need to tell Dr. Spack. I need medical help.’ He literally said those words: ‘I need medical help.’ ” Aileen looks at Kyle now, who is fiddling with a rubber rainbow bracelet. “And Dad started crying.”
“I really don’t remember that,” Kyle says. “I wish I did. I can’t picture that at all. I’ve never seen my dad cry.”
Aileen nodded. “Dad started crying and he looked at Dr. Spack, and he said, ‘I understand. You need to help my son.’ And that was the beginning.”
Happy with the treatment he received from Spack, Mark referred his friends, and his friends referred their friends, and soon Spack had a busy practice of transgender teenagers and adults. Doing this work, he was often struck by “how difficult it was, particularly for male-to-females who were undergoing transition in their 30s and 40s,” he recalls. For those who had completed puberty in their birth sex 20 and 30 years before, hormones and surgery could only do so much. So when, in the early 2000s, he heard about a new Dutch protocol which could prevent the onset of puberty in young trans people, he was intrigued.
He was a pediatrician, after all, and together with the administration at Boston Children’s Hospital — where he was transitioning to a full-time position — Spack decided to transfer all of his adult patients to other providers in order to focus solely on kids. He personally trained many of these doctors who went on to care for his adult patients. One of them was Alex Gonzalez, medical director of Fenway Community Health Center.
The Fenway has 800 patients in its transgender health program and is considered one of the nation’s premiere medical centers specializing in care of the LGBTQ community. Indeed, you might think they had a strong transgender health program from the start. But “of all the many different people we’ve had to come help us build our program here,” says Gonzalez, “Dr. Spack stands out as one of the most instrumental.” Spack’s “Transgender Health 101″ presentation some six years ago, and his ongoing support, has helped to quadruple the program’s size. “Probably the most attention-getting aspect of Dr. Spack’s approach is that it really isn’t sensationalistic at all,” says Gonzalez.
At the time, Spack had colleagues who wanted to start a program like GeMS, but they faced unsupportive department chairs reluctant to intervene medically “in a pediatric population deemed to have a primary psychiatric problem,” as Spack describes it. “They said, ‘You guys have got to be nuts, doing this in a pediatric hospital.’ ” But the administration at Children’s was on board from the start. Joseph Majzoub, Chief of Endocrinology at Children’s, who years earlier had helped arrange a special rider on Spack’s malpractice insurance to allow him to see transgender adults, encouraged Spack to pursue puberty suppressants, the newest approach to treating transgender kids.
“The guiding principle should be what’s best for the patients,” Majzoub says. “Norm has been very crystal clear in his thinking about this and his commitment. He made it easy. I don’t know what the biases might have been elsewhere, but when one takes one’s cues from what the patients need, you’re usually right.”
Kyle Smith had crushing parental separation anxiety and, until he was 10 years old, not a single friend in the world. How could he? He couldn’t even say his own name. He had not gone to school for more than a week since first grade. His family and the school had tried everything, from a rewards system to the principal carrying him physically into the building, but it was never long before he had a massive anxiety attack and had to go home.
“Dr. Spack and his team told us that his anxiety, his school, everything would be fine, when he lived fully as a boy,” recalls his mom, Aileen. “And of course they were right. Everything.” They had to move from a small college town in central Maine to another city in that state in order to do that — they later won a large settlement from their original school district when the school superintendent refused to cooperate — but once he walked into the first day of sixth grade at his new school with his new name, his male pronouns, his boy haircut, and boy clothes, he introduced himself to his new friends and never looked back.
As kids like Kyle become increasingly more accepted, and as access to care becomes easier, critics on both the left and the right of Spack’s pragmatic, supportive approach fear that Spack and those like him are making it too easy for kids to transition.
“If you put a kid on blockers, in a way the clinician is giving either an implicit or explicit message that we don’t really see that there are alternatives than to go down a sex-reassignment pathway. And we don’t really see it as possible that there could be other outcomes that may be equally as good — maybe even better for some kids,” says Dr. Kenneth Zucker, head of the child and adolescent gender identity clinic at Toronto’s Centre for Addiction and Mental Health.
Accused by some of practicing “reparative therapy”— he encourages parents to stop their young gender-variant kids from experimenting with opposite-gender names, toys, and clothes — Zucker is something of a bête noir in many trans communities. But he feels strongly that “if a child can grow up and feel comfortable in his or her own skin that matches their birth sex, then you avoid the complexity of fairly serious surgical treatments. Penectomy and castration is not the same thing as having mild and minor cosmetic surgery. Lifelong hormonal therapy: it’s serious.”
On the left are critics who dislike the binary model that GeMS inevitably plays into. “Sometimes when I speak in a binary model, people are critical of that,” says Spack. “They want more fluidity about gender.” As an endocrinologist, Spack can only treat those trans kids who want to be either boys or girls: there can be no gray about it. His hormones and pubertal suppressors would be of no use to other kids — and the intervention is too serious for him to consider using with kids who might later change their minds. Still, he’s not advocating that kids need to live in a binary if that’s not right for them. “I would [defend] the right to be genderqueer just as much as I would defend the transgender person’s right to be in the gender they affirm,” he says. “So when people come up to me, I say, ‘You know, you of all people should be sensitive to the fact that in my accepting you, you have to accept them.’ ”
Whether transsexualism is a medical or psychiatric issue — or an issue at all — is more than a rhetorical question. According to the American Psychiatric Association, Gender Identity Disorder (or GID, diagnostic code 302.6–302.85) is a mental disorder: it has been classified as such in the Diagnostic and Statistical Manual, or DSM — the bible of psychiatric illness — for 30 years now. A new volume, DSM-V, is currently being researched and written, prompting vociferous debate about whether trans people warrant a psychiatric diagnosis — and, if so, what to call it. (In the new edition, due out in May 2013, GID will likely be renamed “gender dysphoria.” Over the protests of many trans activists, Zucker is chairing this committee.)
Hormones and surgery cost tens of thousands of dollars, and whether these are covered by insurance hinges, in part, on whether kids have a formal medical diagnosis. Spack sees families all the time whose insurance companies refuse to cover pubertal suppression because their gender dysphoria is classified as a psychiatric illness. But it seems clear to him that whatever mental distress these kids are suffering is the result of their medical problem. With treatment, he says, “You treat not only the medical hormonal deficiency, and help them attain the body that they wish, but you are very likely to erase a whole bunch of psychopathology that’s all secondary.”
He has seen this over and over again in patients like Kyle: once they are able to live comfortably in their affirmed gender, their anxiety and depression — even bipolar disorder — disappear. Spack says that even mild autism in trans kids (studies show that 10 times as many gender-variant kids than kids in the general population have autism-spectrum disorders) may be alleviated with treatment for gender dysphoria: “Perhaps the social awkwardness and lack of peer relationships common among GID-Asperger’s patients is a result of a lifetime of feeling isolated and rejected,” he wrote in a recent article in the Journal of Homosexuality; “and maybe the unusual behavior patterns are simply a coping method for dealing with the anxiety and depression created from living in an ‘alien body,’ as one patient described it.”
For Kyle’s part, now that he has less to prove with regards to his masculinity — he has been on testosterone for more than a year and lives fully as a boy — he has chosen to express his boy-ness in a less “binary” way. “I’m not exactly the most masculine of masculine,” Kyle says. He feels freer to express what he calls his “feminine side,” sewing, knitting, and shedding the emphatically masculine clothes he used to wear in favor of more gender-neutral or feminine attire, like wrists full of beaded bracelets. He has become deeply involved in the Trans Youth Equality Foundation, a national organization that provides support and education for families and communities of trans kids. He recently came out as gay. And he has stopped being “stealth” at school and started telling friends about his experience.
As for GeMS, since its founding, it has grown into a multidisciplinary clinic, with a team that includes a psychiatrist, a psychologist, a urologist, a gynecologic surgeon, a specialist in genomics, and a social worker. They have developed a careful algorithm: families do a preliminary intake with an administrator first, then a more thorough intake with a social worker, followed by exhaustive testing by a psychologist, before they ever set foot in Spack’s office. That’s how it’s designed to work, anyway, and it’s largely set up to save Spack time and trouble; patients who are too young, or are not totally sure they want to transition, are referred for further therapy or counseling. But as often as not, Spack thinks of kids like Kyle, and is so eager to end their suffering that he just picks up the phone himself.
Victor Samuels, father of Spack’s patient Justine, e-mailed Spack when his daughter was 11. The reply came the next day, Samuels recalls.
” ‘I have a six-month waiting list,’ ” Spack told him, ” ‘but I’ll see if I can get you in earlier.’ Ten o’clock that night I get a phone call at home. It’s Dr. Spack. He says, ‘I have a cancellation tomorrow at 10. Would you and your wife like to come in to see me?’ ”
Justine is now 13, and “sometimes I actually have to remind her,” says Justine’s mom. “If you look at so many other transgender individuals who have had to figure out how to take back certain things: how to become more feminine, how to become more masculine. And she’s been able to stop time. And stop this puberty. We’re sometimes like: ‘You don’t know how lucky you are.’ ”
On the day I met her parents, Justine was at cheerleading tryouts. “At my chagrin,” her mom said, laughing. “But she’s there.”
In 2009, Spack co-authored the Endocrine Society’s first-ever clinical guidelines on treatment of transsexuals, and this year Pediatrics published an article in which Spack describes GeMS and his clinical approach; this article — the first time treatment of trans kids has been described for a general medical audience — was a real coup, since primary care pediatricians are often the first person a parent turns to for help with a gender-nonconforming kid.
Alongside Spack’s pragmatism and his protectiveness of his patients — his insistence that taking care of them is just like taking care of any other patients — is an enduring sense of wonder at stories like Kyle’s, at the kinds of transformations that something as simple as hormone re-regulation can help facilitate. This is a source of great comfort and satisfaction for Spack as he looks toward his retirement.
It feels good, he says, “watching kids move confidently through life. Feeling that they’re not crippled. But that’s also a dual thing. That’s both a hormone and a receptor, you know?” he asks, ever the endocrinologist. “The kid is the hormone who’s had changes that enable them to be accepted, but they’re also entering a world that’s more accepting.”