History: the 1950s to the 1970s

Freud, in his monumental works, distinguished the anatomic and physiologic sex of self from what we presently know as “gender.” He wrote of the effects of the environment and experience that challenged one’s biology. The linkage of “sex” and “gender” as terms that reflect identical or closely-related concepts is long standing; we now know that the two expressions and concepts often must be separated for analysis of human behavior. Since the 1960s and 1970s, distinguishing the terms took on a new urgency. This may have been a reflection of increased notice of, and interest in, subjects, such as homosexuality, transsexuality and intersexuality. Clinicians and researchers were scrutinizing these topics with an aim to determine whether they were sicknesses that were amenable to treatment, mental or moral matters, or just unique, yet normal, and to- be-expected variations.

Even today, typical expectations are that the terms “sex” and “gender” reflect each other. Males are expected to be masculine and females are expected to be feminine, regardless of how the terms are defined in any particular society. Intermediate, but less socially threatening, occasional blended-gender roles became more noticeable in the 1960s and gave increased prominence to distinguishing sex from gender [1].

In the United States, the 1950s were a time when homosexuals were denied jobs and were imprisoned for “criminal” behavior. It also was a time when Christine Jorgensen, an ex-G.I., went to Denmark to have a “sex-change” operation and the world began to hear of individuals of one sex who wanted to change their bodies and adapt the gender of the other sex [2]. Also, intersexed individuals began to be better known to the medical community [3]. In the 1960s and 1970s, clinicians and theorists increasingly attended to sex-gender relationships, mostly to look at differences—rather than similarities—between men and women [4-6].

These challenging situations brought new ways of thinking about behavior. Among these ways were discussions of “identity” and “roles.” Stoller [7] coined the term “core gender identity” to reflect a person’s “fundamental sense of belonging to one sex [an awareness of being male or female and] an over-all sense of identity.” He attributed this to a combination of infant—parent relationships, the child’s perception of its external genitalia, and by a biologic force that springs from the biologic variables of sex [7,8] Money and colleagues [9] coined the term “gender role” to “mean all those things [behaviors] that a person says or does to disclose him or herself having the status of boy or man, girl or woman, respectively” [9]. Money and Ehrhardt [10] defined “gender identity” as “the sameness, unity, and persistence of one’s individuality as male, female, or ambivalent...the private experience of gender role.” This, they said, basically was derived from rearing experiences. Gagnon and Simon [11] introduced the term “sexual identity” to indicate the awareness of an individual as a sexual-erotic agent within a larger “social identity” that was an appreciation of how a person fit into society. They also introduced the concept of “sexual scripts” that are socially imbued ways of acting in different circumstances. The basic ideas are that sex, genes, and hormones establish one’s body and physiology, but one’s gender is a product of learning, experience, and indoctrination.

These ideas did not go unchallenged. Several animal experiments revealed the power of genetics and endocrines to structure males to show reproductive sex-typical female behaviors and to induce females to display as males [12,13]. For animals, the term “sex-typical behavior” was comparable to gender-appropriate behaviors. Reports on humans also showed that individuals who rejected their sex of rearing and experience were not rare [14,15]. From these studies, a distinction was made between “organizing” forces—usually prenatal—that dictate the direction of future behaviors and “activating” events or forces— usually postnatal—that precipitate behaviors [12,16]. Debate on theoretic grounds also existed [4,17-19] and there were calls for a middle ground where organizing and activating forces—built-in and learned—would interact to mold behavior [18].

An ongoing dispute appeared among psychotherapists, biologists, educators, and others about the forces that are involved in the development of gender and how those forces are influenced by the environment. In contrast, a seemingly unified medical understanding emerged. This medical consensus harkened back to the ideas that sex-atypical gender behaviors were the product of social and environmental forces. Most physicians believed that homosexual, cross-dressing, and transsexual activities were deviant; the treatment for the atypical behaviors seemed to be clear. The subject should be helped to “unlearn” and get rid of whatever misperceptions and negative experiences had engendered these behaviors. Often, the treatments that were applied would be considered abusive today. They ranged from different aversion therapies to castration to electroshock [20,21]. Such treatment was seen as justified. For example, Bancroft [21] wrote “In the absence of unequivocal scientific criteria of morbidity, behavior may be deemed pathological because it violates social norms.” Intersexuality was not seen as antisocial but it was seen as something to be hidden or disguised; often by surgical intervention [22,23]. It also was seen as a body of conditions that resulted from some medical “error” [24].

The “middle” years: 1970s—1990s

From the 1970s to the 1990s things changed. In the 1970s, the American Psychiatric Association removed homosexuality from its list of disorders and the American Association of Behavioral Therapy questioned the ethics of attempting to change men’s or women’s sexual orientation. Homosexuality was seen less frequently as a medical disease that required treatment and was seen increasingly as a variation in orientation that only needed medical management when it was ego-dystonic.

The Harry Benjamin International Gender Dysphoria Association (HBIGDA), named after the physician that presented a major human face to transvestism and transsexuality [25] was formed in 1977. This organization dedicated itself to dealing with persons who were diagnosed as transsexuals (persons who have a desire to change sex that persists for at least 2 years). This diagnosis was introduced into the Diagnostic and Statistical Manual of Mental Disorders, Third Edition as Gender Dysphoria of Adulthood. Gender Identity Disorder of Adolescence was introduced as a separate category. In 1994, the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) listed Gender Identity Disorder of Childhood, Adolescence, or Adulthood. Initially, HBIGDA clearly considered transsexualism to be a mental disorder that could benefit from counseling, hormone therapy, and surgery. In Standards of Care that was published in 2001, however, HBIGDA hedged its bets regarding the “disease” status of transsexualism. In their 2001 guideline booklet, the relevant section was entitled “Are Gender Identity Disorders Mental Disorders”? Without answering their own question they went on to state “To qualify’ as a mental disorder, a behavioral pattern must result in a significant adaptive disadvantage to the person and cause personal mental suffering” [26]. Debate occurs because many persons who are diagnosed as transsexuals consider their behaviors to be a significant advantage to their lives. Nevertheless, many transsexuals do manifest signs of emotional distress and recommendations were offered to assist the individual in appropriate transformation when warranted. In the DSM-IV the diagnosis of Transsexualism was replaced by Gender Identity Disorder [27].

The 1970s also saw the increasingly frequent use of the new term “transgender” which was coined by Virginia Prince. The term was meant to describe persons like Prince who were heterosexual males who wanted to live as women, at least part time. The more common term for such people is “transvestite.” Prince also intended that the term include females who chose to exhibit male behaviors and dress. In Prince’s use, the term “transgender” specifically excluded transsexuals because transgendered persons desired to change only their behaviors, not their sex [28]. The term has been in a constant state of flux, and, can, at present, seemingly cover any gender-bending or gender-blending combination of masculine and feminine [29].

Among the more significant developments of this period was the formation of different support groups for sexual and intersex situations. These primarily were started by parents who sought information and help in understanding intersexuality and to press for further research and improved treatment for their children. Previously, medical management guidelines had not fostered the meeting of such parents or their children with others who were similarly involved. Often, such meetings were actively discouraged and secrecy was encouraged.

The first support groups to form were those for Turner’s syndrome in Canada in 1981 and in the United States in 1987; however, others followed soon after. The Klinefelter’s syndrome support group in the United States and the Androgen Insensitivity Syndrome group in the United Kingdom were formed in 1989. These groups proved to be popular. In 1993, in the United States, Cheryl Chase, an individual who had an intersex condition, founded the Intersex Society of North America (ISNA). This organization developed into a highly vocal and visible association. Another intersex support group, Bodies Like Ours, has since joined in working on behalf of intersexual persons with any diagnosis. Support groups for lesbians and gays also formed in the 1970s and 1980s.

The current years: the 1990s to the present and intersexuality

It is probably fair to say that intersexuality—until the last 10 years or so—was a comparatively hidden medical condition that was far from the public’s consciousness. The general public often had a biased view of people who were then called “hermaphrodites.” Their view often was drawn from circus sideshows and their displays of women who had beards and men who had breasts. Physicians—when they met with intersexed patients in their practice—often recalled their uniqueness in later casual discussions. Without asking the patient’s permission, residents and medical students were brought in frequently to observe the most private of examinations. Without necessarily using the words, clinicians often told these patients that they were oddities and so rare they would never meet another person like themselves—worse, the patients were told not to try. Over the last several years, in addition to media exposure, several books [23,30,31] and popular writings [32—34] have brought the phenomenon out of the closet and more intersexed individuals to the awareness of physicians.

Intersexed persons have a biologic/medical condition that is not uncommon. It is a diagnosis that is shared by as many as 1% of the population.1 It has been estimated that in the United States, the incidence of intersex conditions with ambiguous genitalia is about 1 in 2000; overall, when including those who have typical looking genitalia the incidence approximates 1 in 100 [30]. Only those conditions that are accompanied by ambiguous genitalia are detected routinely at birth.

Increased medical attention toward intersexuality started to shift in 1997. Until then, the attitudes regarding intersex situations and the standards of care for the management and treatment of individuals who had the conditions were different from those that are available today. Drawing on the theory that psychosexual development largely was a product of upbringing and genitalia that were typical, those who cared for infants who had ambiguous genitalia tried to benefit those children by “normalizing” their genitalia. Surgeons reduced enlarged clitorides in infants who were assigned as females and because of the technical difficulty of creating a functional and cosmetically believable set of male genitals, refashioned the genitalia as female. This practice was standard and was sanctioned by the American Academy of Pediatrics [35].

Since 1997, many of the issues that are associated with medical concerns of the genitalia and the treatment of intersexuals have come under review and management techniques have been altered. It is likely that facets of intersex management will continue to occupy the attention of health care workers for years to come.

Significance of John/Joan: the debate

Intersexuality and its management were brought into focus, not by a case of intersexuality, but by a circumcision accident and its follow-up. This story is now known by the pseudonyms John/Joan [34,36].

John’s penis was burned off accidentally in a circumcision that was done by cautery. Following the accident, the decision was made to rear the child as a girl, Joan. The decision was based on the belief that in the absence of a functioning and adequate penis, normal male development was impossible. Furthermore, it was believed that an individual was psychosexually neutral at birth and a gender would be determined by rearing [9,37,38].

Following John’s sex reassignment, it was reported that the switch to life as a girl was successful [10]. For physicians, this report was significant. On the belief that sex reassignment was possible for a typical child, clinicians reasoned that it could be suitable for the numerous individuals whose genitalia were ambiguous. Physicians were advised “... an intersexed baby with female-appearing genitals should always be assigned as female” and “in the case of a genetic male baby born with no penis at all ... or with major hyperplasia of the penis, the baby should be assigned as a girl” [39]. Aside from the theoretical view that psychosexual development would be structured by rearing, there was the practically appealing matter that it is easy to create a vagina if one is absent, but it is not possible to create a satisfactory penis if the phallus is absent or rudimentary. “The decision to raise the child as a male centers around the potential for the phallus to function adequately in later sexual relations” [40]. Pronouncements such as these essentially established that, regardless of karyotype and prenatal endocrine exposure and particular medical diagnosis, all intersex conditions could be managed by cosmetic attention to the genitals and gender assignment that usually was female.

Things changed in 1997 when an article appeared that detailed a follow-up to the John/Joan case [36]. Instead of supporting the original claims that a typical boy could have his gender successfully reassigned to that of a girl, the new report documented the opposite. At the age of 14 years, despite being reared as a girl and undergoing psychiatric counseling and an estrogen regimen to reinforce a female identity, Joan reassigned himself to live as a boy. He never had accepted his original gender reassignment. Other cases where the sex reassignment of intersexed children was rejected also were reported [41,42]. These new findings, with their implications for general and typical gender development, were reported immediately on the front page of the New York Times and in the pages of other major popular and medical media.2

This case seemed to indicate that people were psychosexually biased and predisposed at birth. The belief that one’s sexual identity could be modified easily by rearing and that individuals were psychosexually neutral at birth lost its footing and a dramatic shift in thinking about the management of intersex conditions gained momentum. New principles of management for intersex conditions were provided [43].

The most basic recommendation was that intersexed infants should be assigned a gender that is not based on the appearance of the genitalia and chance of good cosmetic surgery, but on a specific diagnosis of the exact condition and the best prediction of the child’s future choice of identity. These new principles of management for intersex conditions also recommended that any cosmetic, non-medically-essential surgery should be postponed and that intersexed children and adolescents should be allowed to make their own decisions as to how they want to live and be treated. Other recommendations were that male infants who had a micropenis should be reared as boys, unless evidence for managing them otherwise was presented. This had been successful in the past [44] and subsequently was found to be successful. The secrecy that most often was recommended to accompany genital surgery and sex reassignment was rejected. Honesty and information was to be provided and it also was recommended that, whenever possible, intersexed persons are put into contact with others who have the same condition. It also was recommended that the child and parents be given ongoing counseling.

In 1998, at the national meeting of the American Association of Pediatrics (AAP), evidence was offered that their standards of care for intersex management were on shaky ground; three strong recommendations were offered [46,47]. These recommendations are applicable to psychiatrists as well as to pediatricians.

Recommendation 1

“There should be a general moratorium on sex assignment cosmetic surgery when it is done without the consent of the patient.”

This recommendation did not infer that such surgery had no application; however, no evidence had been presented that the surgery was beneficial. The application for such surgery was based on anecdotes and some case reports, not evidence-based medicine. Because there was no reported evidence for the practice, and such evidence still remains elusive, the golden rule of medicine seemed appropriate “First do no harm — Primum non nocere.”

Recommendation 2

“This moratorium should not be lifted unless and until complete and comprehensive retrospective studies are done and it is found that the outcomes of past interventions have been positive.”

Because long-term follow-up studies on the old protocols were lacking, evidence must be gathered to justify the practices. Because so many procedures had been done over the years, at least the records of those physicians and surgeons who were still active should be examined. Part of the difficulty stems from the fact that children do not become erotically active within the 6 months or 1 year follow-up period that might follow infant surgery; erotic sexual activities might not occur until puberty, adolescence, or later. Research must inquire in detail about sensuality, orgasmic thresholds, identity and the like. Simply asking if one is sexually active or sexually experienced—whatever that could mean—or if one is dating or married is insufficient.

Future research may find that such operations and procedures are appropriate; however, not having the evidence lends uncertainty to life features of dramatic importance. These can range for one opting or being forced to live as a man or woman, and surgery can preclude males from being fertile and procreating. Such procedures can alter future medical conditions and situations. The negative cost of ill-advised surgeries and sex reassignments can be high. It recently was determined, for instance, that infant clitoral and vaginal surgery is ill-advised. Among adolescent women who were studied who had these procedures, 41% felt that the cosmetic result was poor and 98% needed further treatment to their genitals [48]. In a separate study, women who had clitoral surgery for an intersex condition reported associated sexual problems. These were characterized as “difficulties with sensuality,” “communication difficulties,” “avoidance,” and lack of orgasm. This was in significant distinction from comparable women who did not have such surgeries [49]. Creighton et al [50] reported that “Most vaginal surgery can be deferred ... Repeated clitoral surgery may be more damaging to sexual function than a single procedure .... and that children with mild clitoromegaly should have surgery deferred until they are old enough to be involved in the decision.”

Recommendation 3

“Efforts should be made to undo the effects of past physician deception and secrecy.”

Often, parents and physicians had concealed aspects of surgery and treatment from the child and excluded maturing children from medical management decisions. Furthermore, secrecy had kept intersexed individuals isolated from honest contact with their families, physicians, and others who had a similar diagnosis. Typically, patients discover their condition from an inadvertent family slip, community gossip, personal investigation into puzzling aspects of their lives, or mix-ups at the doctor’s office; it is better for the physician to initiate disclosure. Without openness, the patient discovers that his or her condition is shameful in the minds of parents and doctors. They wonder why they were not accepted and loved as they were and on what grounds it was decided that they could not manage the information. Also, the patient learns that s/he has been deceived since childhood by the people who should have been the most trustworthy—parents and physicians. All of this is damaging. To the extent that these children are misled, as they mature to adulthood they cannot act rationally from a realistic appraisal of their medical condition.3

Following the San Francisco meeting of the AAP, matters regarding intersexuality moved quickly. Many physicians have changed their practices. For others, skepticism of the new ideas remained and surgery still was advocated [52]; subsequently, caution and awareness of potential problems was recognized [53]. Sheldon [54] wrote “Surprisingly little has been written on the psychosocial outcome... We must completely inform the parents of such children regarding not only the physical risks of surgery, but the psychosocial risks as well... While I strongly disagree that a moratorium on childhood genital reconstruction is in order ... we should present this as an option, continue to listen carefully to our patients, make a meaningful attempt to study psychosocial adaptation and then alter our management accordingly.” Others quickly argued for rethinking the old protocols [55,56].

The year 1998 was important for the study of intersexuality for other reasons. Two significant publications appeared: Kessler’s [23] Lessons from the Intersexed and a special issue of the Journal of Clinical Ethics organized by Alice Dreger [57]. Kessler argued that the medical community was subjugating the intersexed child’s needs, not to evidence but to maintaining existing practices and to their social and cultural beliefs of gender. The Journal of Clinical Ethics issue was devoted to ethical matters that are related to intersexuality. This issue also contained testimonies of intersexed persons who declared that they wanted to be allowed to develop without surgery and to participate in any medical decisions.

A 1998 report challenged the findings of the John/Joan case. Bradley et al [58] reported on a case in which, like David, a circumcision accident resulted in a normal boy losing his penis; like David, this boy was raised as a girl. When questioned as an adult, this individual claimed to see herself as a woman. She admitted that she was a tomboy as an adolescent and presently is predominantly gynecophilic and considers herself ambisexual [59]. Other cases, however, have reinforced the John/Joan findings [47,60].

The Texas Conference

One rapid result following the publication of the follow-up to the John/Joan case and the presentation to the pediatricians was a call for a conference to consider the implications of the findings and the subsequent three recommendations. The conference was held in Dallas, Texas in the spring of 1999.

From the Texas conference [61], two themes were reinforced: (1) more research with long-term studies are needed and (2) patients should be as informed as soon as possible as to their condition. A third theme re-emerged: the brain has to be recognized as a sexual organ [62] and “Since the human brain is sexually dimorphic, it is not always possible to predict whether the adult will be happy with their gender 20 or 30 years after such a critical decision has been made in the first days of life” [63]. A moratorium on infant surgery was considered unrealistic, however; mostly because it was hypothesized that it would not be accepted by parents [53].

Shift in stigma: atypical versus disorder

Intersex conditions are no longer seen universally as disorders or errors of development but are increasingly being seen as “variations” of life. This change occurred rapidly among intersexuals themselves but is ongoing among the medical community. It is advocated that intersexuality be considered and labeled with a more neutral term and seen as a condition without stigma rather than as a disorder [43]. Humiliation and shame need not accompany and taint the medical or social circumstances; humiliation and shame often have followed from intersexed persons being treated as bizarre and with mendacity. This led many to seek psychiatric care. Seeing intersexuality as a typical variation—rather than as a stigmatizing condition—is an ongoing process but one that should prove easy for clinicians to eventually adopt and foster.

Change in medical practices: standards

Standards of care for intersex conditions have changed markedly. In 2000, the American Academy of Pediatrics modified their standards in recognition of the new evidence [64]. Similarly, in 2001 the British Association of Pediatric Surgeons modified their standard of care for intersexed children [65]. In these new guidelines, some concessions were made to the three recommendations; however, neither the US nor the British group accepted the idea of a surgical moratorium and neither group spoke to the recommendation for call back to those families or individuals that had previous treatment. Both groups recognized the need for more research on the topic and greater candor and honesty when dealing with families and patients. The recommendations from the United States and the United Kingdom pediatric associations are not identical; they differ in some important ways. The following are noteworthy differences:

  • The identification of ambiguous genitalia should alert the staff that this is a social emergency (US); “While there is likely to be continuing pressure from parents for early corrective surgery, fully informed consent for such procedures would require them to be aware of the possibility of non-operative management with psychological support for the child and family” (UK).
  • All females who are virilized because of congenital adrenal hyperplasia (CAH) or matemal androgens should, because of their retained fertility, be raised as girls (US); “Assignment of gender has to be on an individual basis, and the decision may need to include cultural considerations” (UK).
  • Infants who are raised as girls “will usually require clitoral reduction” (US); “There is a strong case for no clitoral surgery in lesser degrees of clitoromegaly” (UK).
  • Boys who have partial androgen insensitivity syndrome (AIS) “in whom a very small phallus mandates a female sex of rearing” should have their testes removed (US). The risk of malignant testicular changes in AIS is small (UK).

Both groups recognized that the potential role of prenatal influences on subsequent behavior need to be taken into account. They also caution that the sex of rearing should differ from the chromosomal sex only after careful individual consideration. What this means in practice is not stated.

Although in some ways these guidelines might be the current recommendations, a host of publications and events have already appeared that will modify their application. These publications and events are within and outside of medicine. Developments in law, for instance, are moving quickly and probably will have an influence on future management [66,67].

Legal considerations: recent developments

In 1998, the Constitutional Court of Colombia, South America ruled that sex reassignment of children would no longer be legal in that country. The Court’s purported goal was “forcing parents to put the child’s best interest ahead of their own fears and concerns about sexual ambiguity” [68]. The Constitution guarantees free development of one’s own personality, which implies a right to define one’s own sexual identity.

Early in 2000, a North American Task Force on Intersex was formed. With a broad interdisciplinary board as consultants, their goal is to gather follow-up data from clinics and physicians about their treatments and results regarding intersex management [69]. In 2002, a meeting that was similar to the one held in Dallas, Texas was held in Tempe, Arizona with hopes that sufficient new data might be reported. Some new findings were gathered and presented; however, it was acknowledged that anecdotal reports were still the norm.4

New data and good research have been slow to develop. Cases of individuals who change gender have continued to appear in the literature [56,70,71]. At the Phoenix meeting, the presentation by law professor, Julia Greenberg, drew the most attention [72]. Her talk was on the legal aspects of gender assignment and the problems that were attendant with then current practice. She indicated that physicians might face legal liability if they continued as before; truly informed consent is not yet possible and the needed research has not been done [66,72]. Another potential problem might occur as a result of sexual discrimination when XX and XY children are treated differently.

Findings about intersexuality of the last several years that are of psychiatric relevance include (in rough chronologic order):

  • Slijper et al [73] reported cases of general psychopathology, excluding problems with gender, in 39% of the intersex cases that they reviewed. They specifically found that 13% of girls exhibited gender disorder of childhood “with intense sadness and dissatisfaction with the assigned sex and a preference for behavior appropriate to other sex.” They also found that there was widespread ignorance of their condition among patients who had AIS [74]. They reported that these mental and counseling problems need attention.
  • Preves [75] reported on extensive interviews with 37 randomly gathered intersexed adults who had various diagnoses. “At the time of interview 24% of the sample presented as a gender different from their sex of assignment and rearing; six were transitioning or had transitioned from male to female, and three from female to male.”
  • Wisniewski et al [45] found that 5 of 18 patients who had congenital micropenis had been reared as girls; 4 of 5 were dissatisfied with their genital appearance. Of those who were reared as boys, 50% reported satisfaction with their genitalia. All claimed to be satisfied with their sex of rearing. It is not clear, however, if these respondents were informed that there was an option as to sex of rearing and offered their response without this information.
  • Schober [76] reported that of 10 intersexed individuals she interviewed, 8 identify as “intersexual” rather than as male or female; 9 have a homosexual orientation. Two of the 10 originally who were assigned as girls are undergoing transformation to male [77].
  • Migeon et al [78] studied a select population of men and women who have a 46,XY karyotype but different intersex diagnoses. Five men (24%) and four women (22%) were dissatisfied with their sex of rearing.
  • Migeon et al [79] found, in an examination of a population of 46,XY individuals, that 66% of those living as women and 38% of those living as men were satisfied with their knowledge of their medical and surgical history.
  • Colapinto [34] reviewed Money’s original thesis [80] and found that most of the intersex patients studied seemed, at that time, to be making an adequately normal adjustment within the sex of rearing without any cosmetic surgery. Money had written: “Far from manifesting psychological traumas and mental illnesses, the study showed, the majority of patients rose above their genital handicap and not only made an ‘adequate adjustment’ to life, but lived in a way virtually indistinguishable from people without genital difference.” Thus, genital ambiguity, without surgery or medical treatment, did not pose a hindrance to a satisfactory life. Had this been publicized, a great deal of surgery could have been averted.
  • Reiner [59] found from following a considerable number of children and adolescents who had cloacal exstrophy, that a significant number of males rebelled against their sex reassignment as female, and, without knowing their histories, declared themselves to be boys.

Where are we now?

Many physicians who used to sex reassign males who had traumatic early loss of their penis or were born with a micropenis, are now more likely to believe that if there were no accompanying intersex condition, such procedures would be a thing of the past [81]. The evidence indicates that past infant cosmetic surgery may not succeed; procedures exist that can provide a phallus for the affected boy should he desire one [82,83]. Surgeons also are less likely to reduce an enlarged clitoris in a girl who has CAH; many others are examining critically how the new and old research regarding intersex treatment should be evaluated [84]. Increasingly, attention from medical ethicists is being called upon for their considerations [85]. This is a marked step forward.

Two other gender-related matters pertain to psychologic management and deserve discussion. One involves dealing with homosexuality. In individuals who are diagnosed as intersexuals, considerations of sexual orientation exist at a different level. This factor deserves discussion with the adolescent. A parallel issue in management is how intersexed individuals are treated when, and if, they present for gender reassignment. Patients often complain that they are not given credit for their own feelings. The treatment that they receive is similar to that of transsexuals when they seek reassignment; they feel as if they are made to prove themselves.

Clinical advice: summary and final words

A review of some of the historic findings and controversy regarding gender-related conditions was presented with a major focus on intersex syndromes. This area is one of intense activity and transformation. Change is rapid among the intersex populations themselves. Many have come out of their closets in a way that was unheard of only a few years ago and they operate with a new degree of activism. Instead of seeing themselves as males or females, some are identifying openly as intersexed [76,86] or are willing to mix and match gender and sex. Be open to what your young patients tell you and help them probe their questions and doubts about identities and preferred behaviors.

The medical communities also are changing markedly. Physicians should be aware of the shifting attitudes and needs of their patients and be aware that one’s sexual profile is complex and are not made up only of what gender typical or atypical behaviors are manifest or what type of sexual orientation is professed. One’s sexual profile is a constellation of a host of factors that should be explored to get a fill appreciation of the patient’s feelings and understandings [87,88]. This is not intrusive and usually will be welcomed by those patients who want their psychiatrist to be able to truly understand them.


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1 Much depends upon how intersex is defined. The narrow definition holds that intersex is a condition that is marked by genital ambiguity. Obvious cases are those with congenital adrenal hyperplasia (CAH) or partial androgen insensitivity syndrome (PAIS). A broad definition includes any individual whose biology includes an identifiable mixture of male and female characteristics, regardless of the appearance of the genitalia at birth. Examples here are persons who have the complete androgen insensitivity syndrome or Klinefelter’s syndrome.

2  The case justified such coverage because the reported success of John’s reassignment to Joan had become one of the most cited clinical cases, not only in medicine but also in psychology, women’s studies, political science, and other disciplines.

3 At the AAP presentation, I introduced Cheryl Chase to physicians who were involved with intersex management. Until then, she and ISNA, using the name “Hermaphrodites with Attitude,” had met with professional rejection. The previous year, ISNA had applied for an opportunity to address or meet with attendees at the AAP conference in Boston and was refused. ISNA’s response was to picket in front of the meeting hall [51]. Henceforth, Ms. Chase was accepted as a representative of the intersex community.

4  It has been conjectured that part of the difficulty in obtaining data from past treatments is that physicians would have to tell their patients aspects of their treatment that they do not want to reveal or that the patients were not told originally. For instance, researchers cannot easily question former patients on the effects of surgery done in infancy when the patients had never been informed of the surgery or that there had been other options or especially, the true reasons for it.

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