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Gender Dysphoria Diagnosis in Children and Adolescents
Jack Drescher, MD
Clinical professor of psychiatry & behavioral sciences at New York Medical College; member of DSM-5 work group on sexual and gender identity disorders; member ICD-11 World Health Organization working group
Dr. Drescher has disclosed that he has no relevant financial or other interests in any commercial companies pertaining to this educational activity.
CCPR: What do we know about how gender identity forms for the average person? When does it emerge, and is there a developmental component to gender identity?
Dr. Drescher: Many people have theorized about gender identity, but I would say that in our current state of knowledge about how one forms a gender identity, the answer is that we don’t know.
CCPR: There is also, I understand, an increasing belief that, like with sexual preference, that it’s not a binary system, that there are people who identify somewhere along a spectrum between feminine and masculine. Do you agree with that?
Dr. Drescher: Yes, there are modern identities today, people who call themselves “gender queer” or “gender fluid,” and new terms are emerging all the time. Even the DSM-5, in discussing the symptom checklist for gender dysphoria, for example, talks about people who feel that they are another gender or some alternative gender.
CCPR: Could you say more about “alternative gender”? What does that mean?
Dr. Drescher: It means that some people identify as neither male nor female; they reject the binary concept of being male or female.
CCPR: So, they are gender neutral in some sense.
Dr. Drescher: “Neutral” might not be the right word, although it is possible some people might describe themselves that way. People come up with all different types of descriptions that reflect how they perceive themselves, how they subjectively feel.
CCPR: What’s your sense of that perception of gender self? Does it solidify at some point, or does it evolve over time? Obviously, there must be social pressures as well.
Dr. Drescher: Again, we really don’t have a good research base from which to draw an answer. We know, for example, in older adolescents and adults who present with gender dysphoria, that in many cases—in most cases, perhaps—the transgender identity seems to be fairly solid and not amenable to trying to change the person’s feelings or change the person’s mind. That’s pretty much why, since the middle of the 20th century, the standard of care increasingly has been to help a person make physical changes to accommodate the felt gender identity.
CCPR: That approach is a fairly major change, though, from the psychiatric perspective, correct?
Dr. Drescher: Well, in the sense that the gender diagnosis—what used to be called transsexualism and gender identity disorder—actually first appeared in 1980 in DSM-III. Prior to that, Richard Green, a pioneering gender theorist, did a survey in the 1960s of about 400 physicians in different specialties (Green R. Attitudes toward transsexualism and sex-reassignment procedures. In Transsexualism and Sex Reassignment, eds. R. Green & J. Money. Baltimore: The Johns Hopkins University Press, pp. 235–251;1969). At that time, most medical professionals didn’t believe in offering gender transition services, but I believe that now the majority of clinicians and psychiatrists have moved to supporting the decision to transition.
CCPR: From your experience, is there an age at which there’s a consensus that gender identity is sufficiently stable that the person’s desire should be followed?
Dr. Drescher: This is still an area of controversy. There are existing standards of care for prepubescent children, for example, who present as transgender who are being given puberty-suppressing medications so that they do not enter into the puberty of the gender that they don’t feel themselves to be (Hembree W et al. Endocrine treatment of transsexual persons: An Endocrine Society clinical practice guideline. J. Clinical Endocrinology and Metabolism 2009;94(9):3132–3154). Puberty suppression is a medical intervention that has been around for about 20 years. It was started by the Dutch Gender Clinic, but it’s being done here in the U.S. too. Some remain opposed to puberty suppression, but those who do it see it as a reversible technique. Some prepubescent children who present as transgender desist (meaning they change their minds about their gender)—they are called “desisters”—and no longer feel gender dysphoria somewhere in the age range of 12 to 14. For such individuals, evidence suggests that one can stop the puberty suppressors without any known adverse effects, except for late-onset puberty.
CCPR: And the contrary view?
Dr. Drescher: Others are opposed because we don’t know definitively about the long-term effects of puberty suppressors. Still, the medications have been in use for 20 years in the Netherlands, and they haven’t seen any major problems with them.
CCPR: So potentially one could make interventions relatively early?
Dr. Drescher: Yes, but only these types of medical interventions. Because we’re dealing with prepubertal children, no one is recommending cross-sex hormone treatments or gender surgery.
CCPR: So they are just delaying pubertal changes?
Dr. Drescher: Right. So, the question becomes with adolescents, when is the appropriate time to do more? Some places are comfortable with intervening at age 16; others won’t do anything until age 18; some places are now beginning to provide cross-sex hormones at a younger age, feeling confident that the child is not going to change his or her mind. Again, these are areas of controversy. The sample sizes are very small, and there hasn’t been a lot of systematic research to really say what the correct answer is. So people are in boots-on-the-ground situations, responding to exigent circumstances.
CCPR: There have been some major controversies—even outright scandals—within this area because of work that initially suggested gender identity was very much an environmentally determined phenomenon. Do you believe that came out of more of a psychodynamic formulation initially, or were there other factors?
Dr. Drescher: Absolutely, dynamic formulations had an influence. I don’t keep track of them, even though I’m a psychoanalyst, because I’m not really interested in formulaic theories—other than perhaps learning Freud’s oedipal complex from a historical perspective. Personally, I don’t see much of a point in delving into speculative dynamics that can neither be proven nor disproven. One of the earliest theories of gender identity formulation was put forth by John Money, a psychologist who was not an analyst. In the 1950s, Dr. Money was working with children who were born with intersex conditions that we today call disorders of sex development. His theory was that, if a baby was born with ambiguous genitalia, a gender assignment had to be made right away, and the parents had to believe in the assignment, or else the gender assignment would not “take,” a process that supposedly was complete by age 3. Few people today accept Money’s theory. Although there have certainly been cases of children with intersex conditions whose gender identity developed in a manner that conformed to this theory, we now know that other children who were given gender assignments that the parents may have believed in nevertheless still developed gender dysphoria.
CCPR: Can you explain the rationale for the change from “gender identity disorder” in DSM-IV and DSM-IV-TR to “gender dysphoria” in DSM-5? How does that reflect on where psychiatry is moving?
Dr. Drescher: I was on the DSM-5 work group on sexual and gender identity disorders. More specifically, I was on the sub–work group for gender identity disorders. The challenge we faced was how to find a balance between the need to continue providing access to care for people with gender dysphoria vs. giving people a psychiatric diagnosis that was stigmatizing. So, when all the appointments for our work group were completed in 2008, there was a lot of press from the lesbian, gay, bisexual, and transgender community. There were people who argued that the diagnosis should be taken out of DSM altogether, just as homosexuality was removed in 1973 from the DSM-II. The perception, which is correct in my opinion, was that removal of homosexuality from the DSM was a major factor in destigmatizing it in the general culture (Drescher J, Archives of Sexual Behavior 2010;39:427–460). So many activists felt that the same thing should be done with gender identity diagnoses.
CCPR: But the work group disagreed?
Dr. Drescher: Taking homosexuality out of the DSM—that is, declaring that it was not a disorder—was fine because mental health or medical “treatment” became a non-issue. With a gender diagnosis, in contrast, accessing care such as hormone treatment, surgery, or even mental health services requires a diagnosis. In addition, some transgender advocacy organizations told our work group privately that they didn’t want the diagnosis removed from the DSM because of legal issues. For example, in the prison system, transgender inmates have sued to gain access to care based on the argument that this is a medical condition requiring treatment and that denying inmates needed medical treatment is a form of cruel and unusual punishment. And, indeed, such lawsuits have been increasingly successful because of the actual DSM diagnosis.
CCPR: Can you give us a specific example?
Dr. Drescher: Sure. In May of 2014, the U.S. Department of Health and Human Services reversed an outdated 1981 ruling that classified medical treatment for gender reassignment as “experimental.” Classified as such, these treatments were not reimbursable by Medicare. This reversal was based, in part, on the reasoning that gender identity disorder in DSM-IV-TR and gender dysphoria in DSM-5 represented the view of American psychiatry that gender identity disorder/gender dysphoria is a medical condition (see http://www.hhs.gov/dab/decisions/dabdecisions/dab2576.pdf, March 22, 2015). In my opinion, our work group’s decision to prioritize access to care by keeping the diagnosis in the DSM was vindicated.
CCPR: How did the work group resolve these various perspectives?
Dr. Drescher: The group made changes in the diagnostic categories (Zucker KJ et al, Archives of Sexual Behavior 2013;42:901–914). For example, there was an effort to tighten diagnostic criteria so that just having some gender-atypical behavior or gender-atypical interest would not be sufficient in and of itself for a diagnosis. Actually, the term “gender dysphoria” has a long-standing history within the treatment community for the psychological experience of not being comfortable with one’s gender. So, the word “disorder” was taken out of the name and replaced with gender dysphoria. Most people following the DSM-5 revision process were quite happy with the name change.
CCPR: What do you predict for the future?
Dr. Drescher: I’m a member of the World Health Organization working group that’s revising ICD-11, which is scheduled to come out in 2018. As you know, the DSM is a catalogue strictly of psychiatric disorders, and whether a diagnosis remains in or out is a binary decision. The ICD is not so binary, because it includes all diagnoses that physicians and other health care professionals use, regardless of specialty. That means ICD can do something DSM cannot: Our work group recommended moving the gender diagnosis from the mental disorder section and putting it somewhere else. The current suggestion is to create a new section for ICD-11 that is medical, not psychiatric, called “Conditions Related to Sexual Health.” Gender issues would be called “gender incongruence” and be part of that new chapter (Reed GM et al, World Psychiatry 2016;15:205–221). So that removes the mental health stigma but retains a treatable diagnosis that will enable access to care, but it will not be categorized as a mental disorder.
CCPR: So, in some not-too-distant future, mental health professionals might focus not on gender identity as a disorder, but on symptoms arising from the perception of being in the wrong body.
Dr. Drescher: Right, which is really how the condition has been treated. During the DSM-5 revision process, we realized that gender identity disorder was a very unusual psychiatric diagnosis. Unlike a diagnosis such as depression, where we have interventions to rid the patient of symptoms, in the case of gender identity disorder, the intervention is to change the person’s body, not the person’s mind. That was unique in DSM.
CCPR: Are there precedents in ICD for creating such a diagnosis?
Dr. Drescher: Yes, ICD already includes some diagnoses that are not medical conditions, but do sometimes come to medical attention: Single spontaneous delivery (O80) and menopausal and female climacteric states (N95.1) both are phenomena that were “medicalized” long ago to provide access to care despite being natural rather than “pathological” life events.
CCPR: Returning to child psychiatry, if a clinician has a prepubertal child who begins to discuss discomfort with his or her gender designation, what would be a reasonable response? How would a clinician approach that?
Dr. Drescher: Gender dysphoria is not a commonplace clinical presentation, meaning that most clinicians will not have much exposure to working with anyone who presents with it. Potentially, that is a problem: It can create a kind of fascination on the clinician’s part without the needed knowledge base of how to be helpful. In such cases, clinicians too often make it up as they go along. Clinicians without experience in working with gender issues who plan to do it on their own are, in my opinion, doing the patient a disservice. It really requires, I think, some exposure and some knowledge. For those who want to learn about care, or simply more about the condition, there are resources available.
CCPR: So it’s a good idea to refer to an expert on the topic with clear cases. But what about a situation where a kid is saying, “I don’t want to be a boy; I want to be a girl”? Does every such case merit a referral?
Dr. Drescher: Such a child may not be gender-dysphoric; not everybody who has an interest in another gender is gender-dysphoric. Some children may express such a desire because they perceive there are more social advantages to being a member of the other gender. Or they may have gender-atypical interests and think that’s the only way to get access to the toys or garments of the other gender. Even so, as I said, this is a highly specialized kind of treatment for a very small patient population; I would recommend that if you don’t know anything about evaluating such children, seek out consultation with someone who does.
CCPR: What about the clinician’s role in working with the parents and family? It’s not always easy for caregivers to accept a difference they’re not counting on or prepared for, and I think many parents have little exposure to someone who is gender-atypical or transgender.
Dr. Drescher: Right. With children and adolescents, you have to work with the parents and sometimes the extended family and social environment too. It is vital that the whole family be involved. In these instances, parents need guidance to help them better understand what is happening and learn about resources they can use. And, again, this is another reason for retention of diagnostic codes that will allow families to access care. We also encourage parents to reach out to other families. There are organizations such as PFLAG, which has national and local chapters, that connect families who have gay children and transgender children.
CCPR: Thank you, Dr. Drescher, for providing this valuable information.
Dr. Drescher: Many people have theorized about gender identity, but I would say that in our current state of knowledge about how one forms a gender identity, the answer is that we don’t know.
CCPR: There is also, I understand, an increasing belief that, like with sexual preference, that it’s not a binary system, that there are people who identify somewhere along a spectrum between feminine and masculine. Do you agree with that?
Dr. Drescher: Yes, there are modern identities today, people who call themselves “gender queer” or “gender fluid,” and new terms are emerging all the time. Even the DSM-5, in discussing the symptom checklist for gender dysphoria, for example, talks about people who feel that they are another gender or some alternative gender.
CCPR: Could you say more about “alternative gender”? What does that mean?
Dr. Drescher: It means that some people identify as neither male nor female; they reject the binary concept of being male or female.
CCPR: So, they are gender neutral in some sense.
Dr. Drescher: “Neutral” might not be the right word, although it is possible some people might describe themselves that way. People come up with all different types of descriptions that reflect how they perceive themselves, how they subjectively feel.
CCPR: What’s your sense of that perception of gender self? Does it solidify at some point, or does it evolve over time? Obviously, there must be social pressures as well.
Dr. Drescher: Again, we really don’t have a good research base from which to draw an answer. We know, for example, in older adolescents and adults who present with gender dysphoria, that in many cases—in most cases, perhaps—the transgender identity seems to be fairly solid and not amenable to trying to change the person’s feelings or change the person’s mind. That’s pretty much why, since the middle of the 20th century, the standard of care increasingly has been to help a person make physical changes to accommodate the felt gender identity.
CCPR: That approach is a fairly major change, though, from the psychiatric perspective, correct?
Dr. Drescher: Well, in the sense that the gender diagnosis—what used to be called transsexualism and gender identity disorder—actually first appeared in 1980 in DSM-III. Prior to that, Richard Green, a pioneering gender theorist, did a survey in the 1960s of about 400 physicians in different specialties (Green R. Attitudes toward transsexualism and sex-reassignment procedures. In Transsexualism and Sex Reassignment, eds. R. Green & J. Money. Baltimore: The Johns Hopkins University Press, pp. 235–251;1969). At that time, most medical professionals didn’t believe in offering gender transition services, but I believe that now the majority of clinicians and psychiatrists have moved to supporting the decision to transition.
CCPR: From your experience, is there an age at which there’s a consensus that gender identity is sufficiently stable that the person’s desire should be followed?
Dr. Drescher: This is still an area of controversy. There are existing standards of care for prepubescent children, for example, who present as transgender who are being given puberty-suppressing medications so that they do not enter into the puberty of the gender that they don’t feel themselves to be (Hembree W et al. Endocrine treatment of transsexual persons: An Endocrine Society clinical practice guideline. J. Clinical Endocrinology and Metabolism 2009;94(9):3132–3154). Puberty suppression is a medical intervention that has been around for about 20 years. It was started by the Dutch Gender Clinic, but it’s being done here in the U.S. too. Some remain opposed to puberty suppression, but those who do it see it as a reversible technique. Some prepubescent children who present as transgender desist (meaning they change their minds about their gender)—they are called “desisters”—and no longer feel gender dysphoria somewhere in the age range of 12 to 14. For such individuals, evidence suggests that one can stop the puberty suppressors without any known adverse effects, except for late-onset puberty.
CCPR: And the contrary view?
Dr. Drescher: Others are opposed because we don’t know definitively about the long-term effects of puberty suppressors. Still, the medications have been in use for 20 years in the Netherlands, and they haven’t seen any major problems with them.
CCPR: So potentially one could make interventions relatively early?
Dr. Drescher: Yes, but only these types of medical interventions. Because we’re dealing with prepubertal children, no one is recommending cross-sex hormone treatments or gender surgery.
CCPR: So they are just delaying pubertal changes?
Dr. Drescher: Right. So, the question becomes with adolescents, when is the appropriate time to do more? Some places are comfortable with intervening at age 16; others won’t do anything until age 18; some places are now beginning to provide cross-sex hormones at a younger age, feeling confident that the child is not going to change his or her mind. Again, these are areas of controversy. The sample sizes are very small, and there hasn’t been a lot of systematic research to really say what the correct answer is. So people are in boots-on-the-ground situations, responding to exigent circumstances.
CCPR: There have been some major controversies—even outright scandals—within this area because of work that initially suggested gender identity was very much an environmentally determined phenomenon. Do you believe that came out of more of a psychodynamic formulation initially, or were there other factors?
Dr. Drescher: Absolutely, dynamic formulations had an influence. I don’t keep track of them, even though I’m a psychoanalyst, because I’m not really interested in formulaic theories—other than perhaps learning Freud’s oedipal complex from a historical perspective. Personally, I don’t see much of a point in delving into speculative dynamics that can neither be proven nor disproven. One of the earliest theories of gender identity formulation was put forth by John Money, a psychologist who was not an analyst. In the 1950s, Dr. Money was working with children who were born with intersex conditions that we today call disorders of sex development. His theory was that, if a baby was born with ambiguous genitalia, a gender assignment had to be made right away, and the parents had to believe in the assignment, or else the gender assignment would not “take,” a process that supposedly was complete by age 3. Few people today accept Money’s theory. Although there have certainly been cases of children with intersex conditions whose gender identity developed in a manner that conformed to this theory, we now know that other children who were given gender assignments that the parents may have believed in nevertheless still developed gender dysphoria.
CCPR: Can you explain the rationale for the change from “gender identity disorder” in DSM-IV and DSM-IV-TR to “gender dysphoria” in DSM-5? How does that reflect on where psychiatry is moving?
Dr. Drescher: I was on the DSM-5 work group on sexual and gender identity disorders. More specifically, I was on the sub–work group for gender identity disorders. The challenge we faced was how to find a balance between the need to continue providing access to care for people with gender dysphoria vs. giving people a psychiatric diagnosis that was stigmatizing. So, when all the appointments for our work group were completed in 2008, there was a lot of press from the lesbian, gay, bisexual, and transgender community. There were people who argued that the diagnosis should be taken out of DSM altogether, just as homosexuality was removed in 1973 from the DSM-II. The perception, which is correct in my opinion, was that removal of homosexuality from the DSM was a major factor in destigmatizing it in the general culture (Drescher J, Archives of Sexual Behavior 2010;39:427–460). So many activists felt that the same thing should be done with gender identity diagnoses.
CCPR: But the work group disagreed?
Dr. Drescher: Taking homosexuality out of the DSM—that is, declaring that it was not a disorder—was fine because mental health or medical “treatment” became a non-issue. With a gender diagnosis, in contrast, accessing care such as hormone treatment, surgery, or even mental health services requires a diagnosis. In addition, some transgender advocacy organizations told our work group privately that they didn’t want the diagnosis removed from the DSM because of legal issues. For example, in the prison system, transgender inmates have sued to gain access to care based on the argument that this is a medical condition requiring treatment and that denying inmates needed medical treatment is a form of cruel and unusual punishment. And, indeed, such lawsuits have been increasingly successful because of the actual DSM diagnosis.
CCPR: Can you give us a specific example?
Dr. Drescher: Sure. In May of 2014, the U.S. Department of Health and Human Services reversed an outdated 1981 ruling that classified medical treatment for gender reassignment as “experimental.” Classified as such, these treatments were not reimbursable by Medicare. This reversal was based, in part, on the reasoning that gender identity disorder in DSM-IV-TR and gender dysphoria in DSM-5 represented the view of American psychiatry that gender identity disorder/gender dysphoria is a medical condition (see http://www.hhs.gov/dab/decisions/dabdecisions/dab2576.pdf, March 22, 2015). In my opinion, our work group’s decision to prioritize access to care by keeping the diagnosis in the DSM was vindicated.
CCPR: How did the work group resolve these various perspectives?
Dr. Drescher: The group made changes in the diagnostic categories (Zucker KJ et al, Archives of Sexual Behavior 2013;42:901–914). For example, there was an effort to tighten diagnostic criteria so that just having some gender-atypical behavior or gender-atypical interest would not be sufficient in and of itself for a diagnosis. Actually, the term “gender dysphoria” has a long-standing history within the treatment community for the psychological experience of not being comfortable with one’s gender. So, the word “disorder” was taken out of the name and replaced with gender dysphoria. Most people following the DSM-5 revision process were quite happy with the name change.
CCPR: What do you predict for the future?
Dr. Drescher: I’m a member of the World Health Organization working group that’s revising ICD-11, which is scheduled to come out in 2018. As you know, the DSM is a catalogue strictly of psychiatric disorders, and whether a diagnosis remains in or out is a binary decision. The ICD is not so binary, because it includes all diagnoses that physicians and other health care professionals use, regardless of specialty. That means ICD can do something DSM cannot: Our work group recommended moving the gender diagnosis from the mental disorder section and putting it somewhere else. The current suggestion is to create a new section for ICD-11 that is medical, not psychiatric, called “Conditions Related to Sexual Health.” Gender issues would be called “gender incongruence” and be part of that new chapter (Reed GM et al, World Psychiatry 2016;15:205–221). So that removes the mental health stigma but retains a treatable diagnosis that will enable access to care, but it will not be categorized as a mental disorder.
CCPR: So, in some not-too-distant future, mental health professionals might focus not on gender identity as a disorder, but on symptoms arising from the perception of being in the wrong body.
Dr. Drescher: Right, which is really how the condition has been treated. During the DSM-5 revision process, we realized that gender identity disorder was a very unusual psychiatric diagnosis. Unlike a diagnosis such as depression, where we have interventions to rid the patient of symptoms, in the case of gender identity disorder, the intervention is to change the person’s body, not the person’s mind. That was unique in DSM.
CCPR: Are there precedents in ICD for creating such a diagnosis?
Dr. Drescher: Yes, ICD already includes some diagnoses that are not medical conditions, but do sometimes come to medical attention: Single spontaneous delivery (O80) and menopausal and female climacteric states (N95.1) both are phenomena that were “medicalized” long ago to provide access to care despite being natural rather than “pathological” life events.
CCPR: Returning to child psychiatry, if a clinician has a prepubertal child who begins to discuss discomfort with his or her gender designation, what would be a reasonable response? How would a clinician approach that?
Dr. Drescher: Gender dysphoria is not a commonplace clinical presentation, meaning that most clinicians will not have much exposure to working with anyone who presents with it. Potentially, that is a problem: It can create a kind of fascination on the clinician’s part without the needed knowledge base of how to be helpful. In such cases, clinicians too often make it up as they go along. Clinicians without experience in working with gender issues who plan to do it on their own are, in my opinion, doing the patient a disservice. It really requires, I think, some exposure and some knowledge. For those who want to learn about care, or simply more about the condition, there are resources available.
Table: Clinical Resources for Gender Issues
(Click here to view full-size PDF.)
CCPR: So it’s a good idea to refer to an expert on the topic with clear cases. But what about a situation where a kid is saying, “I don’t want to be a boy; I want to be a girl”? Does every such case merit a referral?
Dr. Drescher: Such a child may not be gender-dysphoric; not everybody who has an interest in another gender is gender-dysphoric. Some children may express such a desire because they perceive there are more social advantages to being a member of the other gender. Or they may have gender-atypical interests and think that’s the only way to get access to the toys or garments of the other gender. Even so, as I said, this is a highly specialized kind of treatment for a very small patient population; I would recommend that if you don’t know anything about evaluating such children, seek out consultation with someone who does.
CCPR: What about the clinician’s role in working with the parents and family? It’s not always easy for caregivers to accept a difference they’re not counting on or prepared for, and I think many parents have little exposure to someone who is gender-atypical or transgender.
Dr. Drescher: Right. With children and adolescents, you have to work with the parents and sometimes the extended family and social environment too. It is vital that the whole family be involved. In these instances, parents need guidance to help them better understand what is happening and learn about resources they can use. And, again, this is another reason for retention of diagnostic codes that will allow families to access care. We also encourage parents to reach out to other families. There are organizations such as PFLAG, which has national and local chapters, that connect families who have gay children and transgender children.
CCPR: Thank you, Dr. Drescher, for providing this valuable information.
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