I want you all to think about the third word that was ever said about you — or, if you were delivering, about the person you were delivering. And you can all mouth it if you want or say it out loud. It was — the first two were, "It's a ..."
Audience: (Mixed reply) Girl. Boy.
Well, it shows you that — I also deal with issues where there's not certainty of whether it's a girl or a boy, so the mixed answer was very appropriate.
Of course, now the answer often comes not at birth but at the ultrasound, unless the prospective parents choose to be surprised, like we all were.
But I want you to think about what it is that leads to that statement on the third word, because the third word is a description of your sex. And by that I mean, made by a description of your genitals. Now, as a pediatric endocrinologist, I used to be very, very involved and still somewhat am, in cases in which there are mismatches in the externals or between the externals and the internals, and we literally have to figure out what is the description of your sex. But there is nothing that is definable at the time of birth that would define you. And when I talk about definition, I'm talking about your sexual orientation. We don't say, "It's a ... gay boy!" "A lesbian girl!" Those situations don't really define themselves more until the second decade of life. Nor do they define your gender, which, as different from your anatomic sex, describes your self-concept:
Do you see yourself as a male or female, or somewhere in the spectrum in between? That sometimes shows up in the first decade of life, but it can be very confusing for parents, because it is quite normative for children to act in a cross-gender play and way, and, in fact, there are studies that show that even 80 percent of children who act in that fashion will not persist in wanting to be the opposite gender at the time when puberty begins.
But, at the time that puberty begins — that means between about age 10 to 12 in girls, 12 to 14 in boys — with breast budding, or two to three times' increase in the gonads in the case of genetic males, by that particular point, the child who says they are in the absolute wrong body is almost certain to be transgender and is extremely unlikely to change those feelings, no matter how anybody tries reparative therapy or any other noxious things.
Now, this is relatively rare, so I had relatively little personal experience with this. And my experience was more typical, only because I had an adolescent practice. And I saw someone age 24, genetically female, went through Harvard with three male roommates who knew the whole story, a registrar who always listed his name on course lists as a male name, and came to me after graduating, saying, "Help me. I know you know a lot of endocrinology." And indeed, I've treated a lot of people who were born without gonads. This wasn't rocket science. But I made a deal with him: "I'll treat you if you teach me."
And so he did. And what an education I got from taking care of all the members of his support group. And then I got really confused, because I thought it was relatively easy at that age to just give people the hormones of the gender in which they were affirming. But then my patient married, and he married a woman who had been born as a male, had married as a male, had two children, then went through a transition into female. And now this delightful female was attached to my male patient — in fact, got legally married, because they showed up as a man and a woman, and who knew, right?
And I was confused — "Does this make so-and-so gay? Does this make so-and-so straight?" I was getting sexual orientation confused with gender identity. And my patient said to me, "Look, look, look. If you just think of the following, you'll get it right: Sexual orientation is who you go to bed with. Gender identity is who you go to bed as."
And I subsequently learned from the many adults — I took care of about 200 adults — I learned from them that if I didn't peek as to who their partner was in the waiting room, I would never be able to guess better than chance, whether they were gay, straight, bi or asexual in their affirmed gender. In other words, one thing has absolutely nothing to do with the other. And the data show it.
Now, as I took care of the 200 adults, I found it extremely painful. These people — many of them — had to give up so much of their lives. Sometimes their parents would reject them, siblings, their own children, and then their divorcing spouse would forbid them from seeing their children. It was so awful, but why did they do it at 40 and 50? Because they felt they had to affirm themselves before they would kill themselves. And indeed, the rate of suicide among untreated transgendered people is among the highest in the world.
So, what to do? I was intrigued, in going to a conference in Holland, where they are experts in this, and saw the most remarkable thing. They were treating young adolescents after giving them the most intense psychometric testing of gender, and they were treating them by blocking the puberty that they didn't want. Because basically, kids look about the same, each sex, until they go through puberty, at which point, if you feel you're in the wrong sex, you feel like Pinocchio becoming a donkey. The fantasy that you had that your body will change to be who you want it to be, with puberty, actually is nullified by the puberty you get. And they fall apart.
So that's why putting the puberty on hold — why on hold? You can't just give them the opposite hormones that young. They'll end up stunted in growth, and you think you can have a meaningful conversation about the fertility effects of such treatment with a 10-year-old girl, a 12-year-old boy? So this buys time in the diagnostic process for four or five years, so that they can work it out. They can have more and more testing, they can live without feeling their bodies are running away from them. And then, in a program they call 12-16-18, around age 12 is when they give the blocking hormones, and then at age 16, with retesting, they re-qualify to receive — now remember, the blocking hormones are reversible, but when you give the hormones of the opposite sex, you now start spouting breasts and facial hair and voice change, depending on what you're using, and those effects are permanent, or require surgery to remove, or electrolysis, and you can never really affect the voice. So this is serious, and this is 15-, 16-year-old stuff.
And then at 18, they're eligible for surgery. And while there's no good surgery for females to males genitally, the male-to-female surgery has fooled gynecologists. That's how good it can be. So I looked at how the patients were doing, and I looked at patients who just looked like everybody else, except they were pubertally delayed. But once they gave them the hormones consistent with the gender they affirm, they look beautiful. They look normal. They had normal heights. You would never be able to pick them out in a crowd.
So at that point, I decided I'm going to do this. This is really where the pediatric endocrine realm comes in, because, in fact, if you're going to deal with it in kids aged 10 to 14, that's pediatric endocrinology. So I brought some kids in, and this now became the standard of care, and the [Boston] Children's Hospital was behind it. By my showing them the kids before and after, people who never got treated and people who wished to be treated, and pictures of the Dutch — they came to me and said, "You've got to do something for these kids." Well, where were these kids before? They were out there suffering, is where they were.
So we started a program in 2007. It became the first program of its kind — but it's really of the Dutch kind — in North America. And since then, we have 160 patients. Did they come from Afghanistan? No. 75 percent of them came from within 150 miles of Boston.
And some came from England. Jackie had been abused in the Midlands, in England. She's 12 years old there, she was living as a girl, but she was being beaten up. It was a horror show, they had to homeschool her. And the reason the British were coming was because they would not treat anybody with anything under age 16, which means they were consigning them to an adult body no matter what happened, even if they tested them well. Jackie, on top of it, was, by virtue of skeletal markings, destined to be six feet five. And yet, she had just begun a male puberty.
Well, I did something a little bit innovative, because I do know hormones, and that estrogen is much more potent in closing epiphyses, the growth plates, and stopping growth, than testosterone is. So we blocked her testosterone with a blocking hormone, but we added estrogen, not at 16, but at 13. And so here she is at 16, on the left. And on her 16th birthday, she went to Thailand, where they would do a genital plastic surgery. They will do it at 18 now. And she ended up 5'11". But more than that, she has normal breast size, because by blocking testosterone, every one of our patients has normal breast size if they get to us at the appropriate age, not too late.
And on the far right, there she is. She went public — semifinalist in the Miss England competition. The judges debated as to, can they do this? And one of them quipped, I'm told, "But she has more natural self than half the other contestants."
And some of them have been rearranged a little bit, but it's all her DNA. And she's become a remarkable spokeswoman. And she was offered contracts as a model, at which point she teased me, when she said, "You know, I might have had a better chance as a model if you'd made me six feet one."
So this picture, I think, says it all. It really says it all. These are Nicole and brother Jonas, identical twin boys, and proven to be identical. Nicole had affirmed herself as a girl as early as age three. At age seven, they changed her name, and came to me at the very beginnings of a male puberty. Now you can imagine looking at Jonas at only 14, that male puberty is early in this family, because he looks more like a 16-year-old. But it makes the point all the more, of why you have to be conscious of where the patient is. Nicole is on pubertal blockade in here, and Jonas is just going — biologic control. This is what Nicole would look like if we weren't doing what we were doing. He's got a prominent Adam's apple. He's got angular bones to the face, a mustache, and you can see there's a height difference, because he's gone through a growth spurt that she won't get. Now Nicole is on estrogen. She has a bit of a form to her.
This family went to the White House last spring, because of their work in overturning an anti-discrimination — there was a bill that would block the right of transgender people in Maine to use public bathrooms, and it looked like the bill was going to pass, and that would have been a problem, but Nicole went personally to every legislator in Maine and said, "I can do this. If they see me, they'll understand why I'm no threat in the ladies' room, but I can be threatened in the men's room." And then they finally got it.
So where do we go from here? Well, we still have a ways to go in terms of anti-discrimination. There are only 17 states that have an anti-discrimination law against discrimination in housing, employment, public accommodation — only 17 states, and five of them are in New England. We need less expensive drugs. They cost a fortune. And we need to get this condition out of the DSM. It is as much a psychiatric disease as being gay and lesbian, and that went out the window in 1973, and the whole world changed.
And this isn't going to break anybody's budget. This is not that common. But the risks of not doing anything for them not only puts all of them at risk of losing their lives to suicide, but it also says something about whether we are a truly inclusive society.