At age 11, Daniel* is tall enough to go on all the rides at Disneyland. He’s tall enough to ride a “teenage” bike, and he’s tall enough to reach the cereal on the top kitchen shelf. But, at 4 feet 6 inches tall, Daniel is still just out of reach of what he really wants most:

He wants to be a girl.

“I wanna get it, but right now I’m too short,” Daniel says, referring to an increasingly used medical treatment that puts puberty on hold for transgender kids.

You see, Daniel, who, his mother says, began covering his genitals with a face cloth at age four because he did not want to see his penis, says he does not want his voice to change. And he does not want to “get hairy.”

To stop that from happening, Daniel will, in about a year and a half when he has grown enough, begin treatment to transition into a female.

The treatment will begin with what is known as a “hormone blocker,” a drug that will postpone the physical changes of adolescence. Some doctors are using hormone blockers to buy time for transgender youth, so they can decide whether they are certain they want to transition. If not, the doctor stops the blocker and the child matures as he or she otherwise would have. If, however, the youth wishes to transition, the doctor stops the blocker and begins “cross-sex hormone” treatments. Later, genital reassignment surgery completes the process. For Daniel, the surgery will be the final step in a journey that began when he was 7, with psychological assessment and living life passing as a girl.

Debate about the medical and ethical ramifications of postponing adolescence is fervent. Opponents question how anyone under the age of consent can make a decision about their gender, and point to potential side effects of treatment. Advocates say that the treatment spares kids the pain of developing features they don’t identify with, saves much of the cost of altering those features through surgery, and reduces the risk of suicide and self-mutilation.

Recently, debate in the medical community has shifted toward a “harm prevention” model, says Dr. Norman Spack, senior endocrinologist and co-founder/co-director of gender management services at Children’s Hospital Boston. Just two years ago, Dr. Spack says, The Endocrine Society refused to host a symposium of the world’s most renowned transgender specialists. Now, the society has asked them to create recommended standards of practice for treatment, which they will publish in about a year and a half.

Further, last February, Dr. Spack and Children’s Hospital Boston, opened the first major clinic in the country to treat transgender children, and they are working closely with European physicians at the forefront of the field.

Physicians at the Amsterdam Gender Clinic, for example, had, by last February, treated about 60 patients by blocking puberty in children who “met strict requirements.” A 2007 sanfranciscoweekly.com article describes the physicians’ work and the criteria the children must meet: “Their Gender Identity Disorder had existed since an early age; they were otherwise psychologically stable; and [they] had a supportive family.” The article reports that the adolescents were “between the ages of 12 and 16 … half of whom were referred early enough to start shortly after the onset of puberty. For those who had reached the middle stages of puberty, the drug could slightly reverse and stop any further development.”

Whether to treat transgender children is a difficult decision to make. Not only must parents and doctors decide whether the child’s feelings are going to last and consider types of treatment and when to begin, parents must also bear the cost of treatment and the fact that they may be met with lack of family support or, at the very least, incomprehension from friends and family.

“[People] don’t understand why we as parents are doing this,” says Daniel’s mother, Stephanie Grant,* who’s written a “booklet” about her experiences titled The Agony of Nurturing the Spirit. “It’s not just because of the suicide rate. It’s one thing to have general reassignment surgery that costs $30,000 to $40,000. But testosterone is such a wicked hormone. … [Transgender] adults spend hundreds of dollars and hours getting rid of hair, muscle tissue, having one’s face removed because testosterone causes changes in jaw structure etc. To save our children from the many hours of surgery, we have an opportunity to help future adult transgenders to just need [genital] reassignment surgery, because what they go through is unbelievable. [But,] people don’t understand why we can’t wait.”

Yet Daniel is patient. “It’s not hard to wait a little bit,” he says – especially now that he’s been presenting and passing as a girl for 5 years, and has met some other transgender children through TransKids Purple Rainbow, an organization his mother co-founded that focuses on support, education and advocacy for transgender people and their families. TransKids Purple Rainbow is seeking federal funding to further the cause, because, “There’s no one funding research, and insurance doesn’t cover treatment,” Grant says.

Lack of insurance coverage is a major hurdle for parents of transgender children because Lupron Depot, the medical community’s blocker of choice for forestalling puberty in transgender kids, is not covered by insurance. Lupron Depot is also not approved by the Federal Drug Administration for use in treating transgender children; however, physicians prefer it because it’s effective yet reversible – if a child decides he or she does not want to transition, treatment is stopped and the child develops as he or she otherwise would have.

But Lupron Depot is expensive – it costs between $500 and $700 a month.

Consequently, many parents of transgender children are turning to doctors who go straight to “cross-sex” hormones to achieve transition. Cross-sex hormones cost much less than Lupron Depot – anywhere from $25 to $70 a month, but many of the changes are not reversible.

Once a decision to proceed with treatment has been reached, the question of when arises.

Dr. Marvin Belzer, an adolescent medicine specialist at Children’s Hospital Los Angeles, uses cross-sex hormones to treat transgender adolescents aged 12 and older.

“Those of us who are doing it feel there are benefits to doing it younger,” Dr. Belzer says. “Some of us feel that the best time is right before puberty.”

Dr. Belzer says that, except in Europe, he doesn’t know anyone in the field who will treat children younger than 12, although he adds, “That’s where the field is heading.”

Not everyone agrees, however, that it should be.

Not all European specialists, for example, advocate starting treatment at an early age. “The team at the Gender Identity Development Service at Tavistock Clinic in London will not intervene until puberty is nearly complete, saying the experience may help patients make a more informed decision about being misplaced in the body,” the sanfranciscoweekly.com article reports.

Further, it quotes Dr. Domenico Di Ceglie, a child and adolescent psychiatrist at the London clinic who warns that “longterm effects of delaying puberty are unknown.” Di Ceglie “questions whether the puberty-blocking treatment itself could affect a patient’s gender identity, since adolescence is a key time for brain development and a possible time for a change in perceived gender.” Di Ceglie also says that 20 percent of the adolescents in the clinic, after completing puberty, decided that they did not want any intervention.

Dr. Spack, however, says that figure indicates that there must be something different about the British patients. “That’s just not our experience,” he says. “My contention is that the British…many of their patients come to them from psychiatric clinics; our patients tend to come to us from skilled psychiatric social workers.” The difference, he says, is likely responsible for the fact that at the Dutch clinic “zero percent of patients regret [treatment].” Nor, he says, do any of his approximately 200 patients. “By the time [our patients] come to us, … they’re just so highly selected and evaluated that they’re just not the kind of people who change their mind.”

He says that U.S. specialists have formed a research consortium with specialists in Europe, and, as a result, members have agreed to subject their patients to a “rigid construct of psychometric testing for gender identity” developed by Dutch psychologist, Dr. Peggy Cohen-Kettenis.” The testing, Dr. Spack says, will put everyone at “square one,” by standardizing the screening procedure internationally. This will, he says, help determine more conclusively who is a candidate for treatment and how he or she should be treated.

But there are still the side effects of treatment to consider. A 2003 article in The Journal of Endocrinology & Metabolism http://jcem.endojournals.org/cgi/content/full/88/8/3467 details the extensive “potential adverse effects” of cross-sex hormone treatment and advises that “[a]lthough guidelines from organizations, such as the Harry Benjamin International Gender Dysphoria Association, have been helpful, management remains complex.”

“Gender Identity Disorder” is the term used in the Diagnostic and Statistical Manual, or DSM-IV, the text psychologists and psychiatrists use to identify mental disorders. But “disorder” is a controversial word in the medical community when applied to transgender people. None of the physicians interviewed for this article believe it is accurate.

“There needs to be an entire rethinking of the condition,” says Dr. Spack.

“I have seen the self-fulfilling prophecy that this is a psychiatric condition. … This is not unlike … the ’60s, when the DSM-IV listed homosexuality as a psychiatric disease and treated it as such, and only psychiatrists took care of [transgender people]. The patients were suffering, and they got treated with psychotropic drugs. … And that reinforced people’s idea that they were psychiatrically ill. [But], what I have seen is that many of the [transgender] patients … if they’ve come to this realization as adults, they have significant social problems; they have significant family issues. But they may not have suffered that greatly…as [for example] someone who has suppressed and repressed [feelings], as gay people have before they come out. But if they have been pushing this back their whole lives, they very often have serious psychiatric problems as a result of that. So that’s the self-fulfilling prophecy that they get into.”

Dr. Herbert Schreier is a psychiatrist at Children’s Hospital Oakland, in the San Francisco Bay area. Two years ago, Dr. Schreier and a colleague started a support group for parents of transgender children due to “an increasing number of referrals.”

“It’s quite clear … these kids, very early on say, ‘Mommy I’m a girl,’ or ‘Mommy I’m a boy. It’s not coming from the culture. It’s coming from an internal sense of who they are. Why you would want to call that a disorder is beyond me,” he says, adding that, although publication of the next edition of the DSM is “a way off yet, there is some debate about whether the DSM- V will continue to call it a disorder. There are still people in the field who feel strongly that this should stay.”

Doctors do, however, agree with the DSM-IV’s description of the severe discomfort that transgender people feel.

Daniel puts it simply: “Sad,” he says, when asked how he feels about his body. “I don’t know how to explain.”

“At this point,” says Dr. Spack, “our job isn’t to try to explain. Our job is to be compassionate.”

Tracie Jada O’Brien, of San Diego’s Transgender Advocacy and Service Center, says, “Data shows that many transgender individuals know at a very early age that there is definitely inner-conflict regarding gender. Many transgender individuals know by age three, that they are the gender not of their birth, and [they] usually demonstrate [this] through cross-gender behavior.”

Such data, plus the benefits to preventive rather than reactive treatment are what inform a growing number of physicians’ approach to the question of when transgender people will benefit more from treatment. “Am I going to act preventively to block this person from turning into the wrong body; or am I going to act reactively, when … the body’s already been formed?” asks Dr. Spack. “Am I then going to remove the breasts; am I going to have them deal with electrolysis. Am I then going to try to get rid of periods that have already started. Am I going to recognize that I will not be able to influence the height of the person. And, in many cases, I’m going to be left with a person who may never pass. And, I’m going to look at a population where nearly 50 percent consider killing themselves. And then I look over at the Dutch, who have 73 people whom they’ve treated. Not one has changed their mind because they screen them so well. And they’re the appropriate height. The females have never menstruated. They don’t slice their arms because of every period they have. The genetic males do not end up with male voices. They do not end up with male height. They do not end up with an Adam’s apple. … And they don’t spend a half a million dollars in their lifetime on electrolysis. And the genetic females never have to have a vasectomy.”

Stephanie Grant doesn’t want Daniel to have to suffer such procedures. After much research and years of observing Daniel’s behavior, she concludes: “You can’t do this to a child, and you can’t stop it. The most you can do is work with it. Most parents wouldn’t think twice about helping a child with a bodily threatening disorder.

These kids have such a high rate of suicide and body mutilation that [treatment offers] a better chance of [Daniel] avoiding misery and us avoiding some tragic outcome.”

[*A pseudonym]

Support group for female to male transsexuals. Meets at the Center the 4th Wednesday of the month from 7 – 9 p.m.

For more information, contact Connor Maddocks at cmaddocks@thecentersd.org, or call (619) 692-2077, ext. 109

Transgender Advocacy and Service Center that offers case management, referral and supportive services for transgender persons with transition-related issues

For more information, contact Tracie J. O’Brien, at 619-515-2449.

Foundation that advocates and organizes events on behalf of transgender children

www.transkidspurplerainbow.org

www.wpath.org

Formerly known as the Harry Benjamin International Gender Dysphoria Association, Inc. WPATH is a professional organization devoted to the understanding and treatment of gender identity disorders.

www.transfamily.org

Transfamily provides support and education for transgender people, their families, friends and significant others. The group is associated with PFLAG and with SSAFE, to bring awareness to school systems, through their principals and counselors, by offering literature, speakers, consultation and support.

www.youthresource.com

A Web site by and for GLBTQ youth takes a holistic approach to exploring issues of concern to the GLBTQ community

www.siecus.com

www.symposion.com