In clinical practice, we have come across people with intellectual disability who have gender dysphoria and cross-dress. Here, we review the literature on this subject and present an illustrative case example. We searched databases, followed-up references from relevant articles, and contacted colleagues in the field. We found nine papers with case examples and one survey. Gender identity problems certainly occur in people with intellectual disabilities, and developmental perspectives are important in assessing and treating them. In some cases autistic spectrum disorder was co-morbid, for individuals with and those without intellectual disability. Aggression was also common. Documented treatments were primarily psychological and social and did not include hormones and sex reassignment surgery. Capacity to consent is a factor that determines treatment.
In clinical practice we have treated several people with intellectual disability who like to cross-dress (i.e., wear clothes not usually associated with their biological sex). Few cases are reported in the literature. Freidreich documented the first case of transsexualism in the medical literature in 1830 (cited in Althorf, Lothstein, Jones, & Shen, 1983). Money (1955) was the first to define gender roles and by the end of the 1950s, it was generally recognized that gender identity was a significant facet of personal identity. Three decades later, gender identity disorder was described in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) of the American Psychiatric Association (1980).
The first cases of cross-dressing in men with intellectual disability were reported in the literature in 1993 (Bowler & Collacott, 1993; Cooper, Mohamed, & Collacott, 1993), and there have been further case reports since. However, little is known about gender dysphoria in people with intellectual disability. Here we present a case vignette that illustrates some of the issues for this population and provide a background for the rest of the article. The material is reproduced with the expressed consent of the individual. In Appendix A, we define some commonly used terms in this field.
Mr. X was a 55-year-old man who was referred to local psychology services after he ran up large credit card debts. After an initial period of treatment, he was referred for individual psychoanalytic psychotherapy assessment. He sent a letter indicating that he wanted a sex change operation and was willing to attend the appointment dressed as a woman. There had been nothing in the psychologist's referral letter regarding his request.
Mr. X entered into once weekly therapy, which initially took the form of an extended assessment. He brought notes he had written at home requesting hormone treatment and a sex change. Prior to the age of 16, he had never thought he might be a woman. When he was 16, he had been forced to dress in his mother's clothes and then was raped by a much older man. After this traumatic event, he continued to dress as a woman secretly while still living at home with his parents. When his mother died a few years prior and he began living alone for the first time, he accrued debts buying women's clothes. He had seen a television program some time before his mother died about sex reassignment surgery and thought to himself “that's what I want.” He had never considered this when his mother was alive because he knew that she would disapprove.
Mr. X was referred to a specialist gender identity clinic. After this referral, he began addressing other issues during therapy, such as loneliness, bereavement, and recalling other traumas he had experienced. It seemed possible that the sex change operation and his pursuit of being female had been holding back these feelings, and once he was listened to and taken seriously, he could move on into mourning. Treatment is ongoing. Like many people with intellectual disability, he saw gender roles as very concrete. For him, being a man was about paying his way and being the head of the family. He believed that being a woman was a way out of these social responsibilities and a means of getting the care he required and being able to admit he could not cope. He continued to attend the specialist gender identity clinic, usually as a woman, where he preferred to be called by a female name he chose.
Concept of Disorder
People with intellectual disabilities and their advocates often object to their intellectual disability being perceived as a mental disorder. They see it more as a part of their constitution. There have been similar debates about whether the term disorder could be dropped from gender identity disorder. Transsexuals themselves see it as a life style choice rather than a disorder. This is analogous to egosyntonic homosexuality, which is now recognized as an alternative lifestyle and has been removed from psychiatric classification systems.
Arguments in favor of retaining a “disorder” label include the fact that people with gender identity disorder seek treatment from doctors and other health care professionals. Many ask for hormone treatment and sex reassignment surgery. Others, particularly children and adolescents and adults with intellectual disability, may require psychotherapeutic exploration and family or care network intervention. The “disorder” label is also useful in developing classification systems that may help and an understanding of which interventions are most useful for which groups and what the prognosis might be.
Concept of Gender Identity
In the Shorter Oxford Dictionary, gender is defined as “sex expressed by social or cultural distinctions” and sex, as “biological differences between men and women.” Identity is defined as “the condition or fact of a person or thing as a continuous unchanging property throughout life” (although some aspects of identity such as political identity may change during a lifetime). Stoller (1992) defined gender identity as “a complex system of beliefs about oneself: a sense of masculinity or femininity” (p. 78). He said that nothing was implied about the origins of this sense. Stoller believed that gender identity is a psychological construction of one's subjective state.
Regarding the development of gender identity, Bradley and Zucker (1997) noted that gender identity is determined by the age of 3 or 4 and that children who are 4 or 5 years old exhibit highly stereotypic gender roles, which become “looser” later in childhood. Zucker et al. (1999) showed that children with gender identity disorder have a developmental lag in gender constancy acquisition. In general, however, sexual identity is not firmly in place until late adolescence. Having set the context, we now describe our review of the literature on gender dysphoria and cross-dressing that relates to people with intellectual disability.
We conducted a literature search in peer-reviewed psychiatric, nursing, and social health care journals from the years 1966 to 2004. The sources searched were Medline, PsychINFO, CINAHL, British Nursing Index, DH-Data, Kings Fund, AMED, and EMBASE, using the terms learning disability, disabled person, intellectual disability, developmental disability, retardation, mental handicap, mental, subnormal, and transsex, transvest gender, transgender, and cross-dress. In addition to searching computerized databases, we followed-up on references from relevant articles and contacted researchers with an interest in this area.
Results of Literature Search
The computerized databases revealed a total of eight case reports of interest. Follow-up of references from relevant articles revealed another case report. Contacting researchers revealed one further paper: a survey. The case reports are summarized in Tables 1 and 2. Table 2, which list relevant studies with the co-morbidity of autistic spectrum disorders.
The survey was of 124 children and adolescents referred to the gender identity disorder unit at the Portman Clinic in London (Di Ceglie, Freedman, McPherson, & Richardson, 2002). Ten of these young people had intellectual disabilities and 20 were general academic underachievers; IQ level was not noted. Personal communication with the researchers revealed that their criterion for describing someone as having intellectually disabilities was a clear diagnosis in the individual's case notes. It is difficult to infer anything from these results other than to say that gender identity disorder can occur in children and adolescents with intellectual disabilities.
Development of Gender Identity
Given the complexity involved in developing gender identity, to what extent do people with intellectual disability develop a gender identity? Is it dependent on the developmental level they achieve? Because as adults their bodies go through the same development of secondary sexual characteristics and hormone surges, what level of understanding is necessary to make sense of this in terms of sexual identity? According to Bradley and Zucker (1997), gender identity is established by the age of 4 or 5, but at this early stage, it is more stereotyped and does not become looser until later in development. In our clinical experience, such stereotypic gender role beliefs are common among adults with intellectual disability. Such beliefs can sometimes be shifted with basic psychoeducational interventions, depending on the developmental level reached.
As part of their generalized developmental delay, people with intellectual disability usually go through the various developmental stages later in life than in the general population. Adolescence as a psychological life stage may be both delayed and prolonged. As part of this, the development of a sense of personal identity, gender identity, and sexual identity may also be delayed, and people with an intellectual disability may need support to go through these stages and develop more fully facets of their personal identity. Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person's family and social network, perhaps more so with people with intellectual disabilities, who may be more dependent on family and paid carergivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.
People with an intellectual disability may be referred to services if they start to cross-dress or try to cross-dress; caregivers and family members may seek professional advice. Differentiation among transvestism, a gender identity disorder, or a delusional belief can be difficult and sometimes impossible, depending on the severity of the individual's cognitive impairments. A good history may be difficult to achieve and acquiescence (agreeing to everything whether it is true or not [Finlay & Lyons, 2002]) must be guarded against. People with intellectual disability experienced a 19% drop in diagnostic accuracy in contrast to individuals without intellectual disability and comparable symptomatology (reviewed in Jopp & Keys, 2001). We are currently undertaking research to investigate whether it is possible to make a valid diagnosis of gender identity disorder in people with an intellectual disability.
Such individuals are, in general, more susceptible to mental illness than are those with average intelligence (Reiss, 1990; Richards et al., 2001). This finding is independent of social disadvantage, and researchers have postulated that it is due to a lack of coping strategies and low self-worth (Richards et al., 2001). Gender identity disorder may also be more common in people with intellectual disabilities; research is needed to evaluate this hypothesis. However, this disorder may not always be detected due to diagnostic overshadowing (Reiss, Levitan, & Szyszko, 1982), which refers to the error of attributing symptoms of additional disorders to the intellectual disability itself, and thus failing to diagnose the additional disorder. Other studies have shown this to be a common clinical bias (reviewed in Jopp & Keys, 2001).
Etiology for gender disorder in the general population appears to be multifactorial, with many factors presenting simultaneously, a reason stated for the rarity of manifestation of gender dysphoria. Factors that have been explored include cultural differences, biological factors, and a range of psychological explanations.
Regarding cultural differences, in a study in Singapore of 200 male to female transsexuals, Tsoi (1990) found that none had been married, whereas up to 50% of Caucasian transsexuals had been married. In New Zealand, Taylor (1982) reported that a disproportionate number of Maoris make requests for sex reassignment surgery.
Researchers have sought biological explanations for gender identity disorder. The prenatal hormone theory is reviewed in Bradley and Zucker (1997). Studies have not been conclusive. Zhou, Hofman, Gooren, and Swaab (1995) found the anterior hypothalamus in male to female transsexuals is the same size as in females without the disorder.
In a variety of studies, researchers have explored possible psychological etiology, including family dynamics and sexual abuse. Zucker et al. (1999) found that children with gender identity disorder have a developmental lag in gender constancy acquisition. Stoller (1975) examined family constellations, stating that gender dysphoric boys were more likely to have closer than typical relationships with their mothers and a distant or even absent father. Gender dysphoric girls were likely to have a depressed mother when they were young and an absent father who did not support the mother. Sex order and birth ratios have also been studied, with gender dysphoric boys having more brothers than sisters and having a later birth order (reviewed in Bradley & Zucker, 1997).
Researchers have posited that the parent's wish to have a child of the opposite gender alone is not sufficient to produce a gender identity disordered adult or adolescent (Di Ceglie, 2000), although parental collusion with the child's wish to be the opposite gender may be a part of a multifactorial etiological picture (Stoller 1975). Bleiberg et al. (1986) cited inability to mourn the loss of an attachment figure as an etiological factor in children.
Trauma, including sexual abuse (Di Ceglie, 2000) and emotional abuse (Kersting et al., 2003), is a further factor that appears to influence both gender and sexual identity, where gender dysphoria may be formed as a psychological coping mechanism. Certainly in our own case example and in one other case report (Beail, 1994), the trauma of being forced to dress in female clothing and then being raped was closely linked to the development of subsequent cross-dressing.
In people with intellectual disability, all of these factors may or may not play a part in the development of gender dysphoria as is the case for people without intellectual disability. People with intellectual disability are more likely to have structural brain abnormalities; however, there is no literature showing whether structural brain abnormalities (e.g., in the anterior hypothalamus) play a part in gender dysphoria in this group. People with intellectual disability may only reach certain developmental levels, which can be thought of as a combination of mental age, chronological age, and life experience. Developmental level can affect expression of gender dysphoria; for example, any homosexual feelings may lead to a concrete thought that they are really the opposite gender in order to conform to certain beliefs they may have been brought up with. Bowler and Collacott (1993) considered the absence of a fulfilling sexual relationship to be linked to cross-dressing by people with intellectual disability, given that in this population, people are less likely to form these types of relationship, which might in turn lead to cross-dressing being more common. Further research into the interaction between delayed and abnormal development and gender dysphoria would help clarify these issues.
The prevalence of gender dysphoria among individuals with intellectual disabilities is unknown. However, it is interesting that most of the case reports involve biological males. Although gender identity disorder is a rare disorder in the total population, prevalence may be rising: Hoenig and Kenna (1974) estimated prevalence of transsexualism in England and Wales to be 1.902 per 100,000. In a primary care study in Scotland, Wilson, Sharp, and Carr (1999) estimated gender dysphoria prevalence rates in individuals over the age of 15 to be: 8.18 per 100,000, with a male to female ratio of 4:1. Wilson et al. reported a comparable figure to Hoenig and Kenna's for transsexualism, 4.8 per 100,000 (Wilson et al 1999). Tsoi (1988) reported higher rates of transsexualism in Singapore (1 per 2,900 males and 1 per 8,300 females; and in the Netherlands between 1980 and 1991, researchers have also reported a rise in prevalence rates (Bakker, van Kesteren, Gooren, & Bezemer, 1993; van Kesteren, Gooren, & Megans, 1996). The rise in prevalence may be due to an increase in tolerance by society, an increase in the availability of treatment, and/or a lowering of the threshold for treatment (Tsoi, 1988).
In several of the case reports about people with intellectual disability, investigators have described significant additional co-morbidity (Beail, 1994; Thomas & De Alwis, 1995; Puri & Singh, 1996; Bowler & Collacott, 1993). In adults, aggression is the most commonly cited co-morbidity; in children, autistic spectrum disorders, although whether the cross-dressing and opposite gender role play is a co-morbid diagnosis or a manifestation of some of the obsessions and rituals or imitative behaviors that are part of an autistic spectrum disorder is not always clear. Indeed, it may not always be possible to clarify these issues depending on the person's level of disability, ability to communicate, and/or their idea of personal identity. Longer term follow-up of the cases reviewed here may also help.
More generally, people in the general population who have gender identity problems can be distressed and may attempt self-harm or even suicide prior to receiving specific treatment for their gender dysphoria. This appears to disappear once specific treatment, including psychotherapy alone, is started (Cole, O'Boyle, Emory, & Meyer, 1997). Self-harm and suicidal ideation were not symptoms described in the case reports of people with intellectual disability reviewed here. Treated transsexuals have been found to have low levels of psychopathology similar to those of the general population (Brown et al., 1996; Haraldson & Dahl, 2000; Miach, Berah, Butcher, & Rouse, 2000).
In the cases reviewed, treatment for the children were mainly educational, which left the gender dysphoria largely unchanged. Drug treatments were given in one case for co-morbid obsessional symptoms. In one case the gender dysphoria was directly addressed and behavior modification attempted; the outcome was not reported.
For the adults, the treatments were varied, although in 3 cases it was not discussed, and 2 individuals were lost to follow up. In the remainder, one individual was treated with an antipsychotic medication and the symptoms were resolved; one had weekly psychodynamic psychotherapy, but the outcome was not reported; one was allowed to express cross-dressing behavior in private and aggression stopped; the last individual had a hospital admission for aggression and met a woman with whom he developed a relationship and, as a result, stopped cross-dressing. One man with fetishistic transvestism and offending behavior was admitted to a hospital under legal powers; his treatment, therefore, included significant containment.
None of the people in the case reports received hormone treatment or sex reassignment surgery. The criteria for treatment of individuals for these treatments in the general population are (a) a persistent identification with the opposite sex; (b) not being sexually aroused by wearing clothes of the opposite sex; and (c) a wish to be accepted by the community as a member of the opposite sex (Landen, Walinder, Hambert, & Lundstrom, 1996; Person & Ovesey, 1979). Demonstrating all three characteristics above is referred to as core transsexualism (Landen, Walinder, Hambert, & Lundstrom, 1996).
The characteristics of those in the general population who are thought to be unsuitable for treatment are (a) when the gender dysphoria manifests after a period living in the biological gender after puberty, (b) when it manifests as a way of avoiding conflict caused by failings in the biological gender role, or (c) presentation after a crisis and when there is a degree of uncertainty (Person & Ovesey, 1979). Once these characteristics are considered, sex ratio of female to males with transsexualism are equal (Landen et al., 1996). The Harry Benjamin International Gender Dysphoria Association (1998) has set standards of care for gender identity disorders.
Sex reassignment surgery is largely irreversible, as are some of the effects of hormone treatment. Some people with intellectual disabilities will not have the mental capacity to consent to such treatments, and a decision would then need to be made in their best interests, leading to ethical dilemmas.
In children and adolescents, gender identity disorder is seen as a developmental disorder with a variety of outcomes (Green, Roberts, Williams, Goodman, & Mixon, 1987; Meyenburg, 1999; for reviews see Bradley & Zucker, 1997, and Di Ceglie, 2000). There is a low incidence of transsexual outcome and a high incidence of resolution in a homosexual orientation in adulthood.
Outcomes for adults in the general population undergoing sex reassignment surgery are generally favorable (Carroll, 1999). Even with careful selection procedures, however, a small percentage of people regret undergoing gender transformation (Van Kesteren et al., 1996). Poor support from family has been found to be the variable most important in predicting regret (Landen, Walinder, Hambert, & Lundstrom, 1998). Gender identity disorder can remit, sometimes after many years (Marks, Green, & Mataix-Coise, 2000).
Little is known about outcomes of gender dysphoria and cross-dressing in people with intellectual disability. Thinking of gender identity disorder as having developmental aspects in people with intellectual disabilities, it might be expected that the variety of outcomes would be similar to those seen in children and adolescents, at a later age and dependent on the developmental level reached.
People with an intellectual disability and gender dysphoria may be doubly discriminated against by society. Cross-dressers tend to find they are stigmatized, which can lead to social isolation and feelings of suicide. Not all communities are tolerant of people changing gender and people are often marginalized. People with intellectual disability often experience this kind of stigma and isolation too; they may be bullied or exploited more easily and more frequently than are their peers without disabilities.
There is not enough published material to form a comprehensive view of gender dysphoria in people with intellectual disability, and more research is needed to clarify the issues. However, it is certainly true that gender identity problems occur in this population. From the literature, the most common presentation of gender dysphoria in people with intellectual disability appears to be cross-dressing. Such behavior should prompt clinicians into further exploration of the person's level of gender dysphoria. The literature also describes significant co-morbidity with autistic spectrum disorders across the age range as well as with aggression. Further research on the literature on neuropathology and behavior and other therapies in the treatment of sexual disorders that are outside the scope of this review are also recommended.
Developmental perspectives are important when assessing people with intellectual disability with gender dysphoria and cross-dressing and could influence the types of treatment offered. Concrete thinking around gender roles, developmental level reached, and difficulty developing aspects of personal identity all may play a part in gender dysphoria and cross-dressing in people with intellectual disability. A detailed and perhaps prolonged assessment may, therefore, be necessary involving caregivers, family, and other involved health care professionals.
Treatments have not involved hormones or sex reassignment surgery in these documented cases perhaps because criteria for gender identity disorder have not been met, or people have lacked to capacity to consent to such treatments. However, the authors are aware of some people with intellectual disabilities who have received these treatments. Based on the papers reviewed here, treatment appears to be guided by what was available locally, and outcomes have not been objectively measured. We are, therefore, unable to form an opinion as to the best types of treatment for gender dysphoria and/or cross-dressing in people with intellectual disability.
People with intellectual disability have more choices now, are more likely to be supported rather than cared for, and their rights as citizens are better recognized. This relative liberation may have led to the more frequent expression of cross-dressing behavior and gender dysphoria in people with intellectual disability, as evidenced in one of the case examples when cross-dressing began after a man with intellectual disability moved out of a long stay institution (Thomas & De Alwis, 1995). A lack of fulfilling sexual relationships has been cited as a possible etiological factor not encountered in other work with people with gender dysphoria and cross-dressing in the general population (Bowler & Collacott 1993).
People with intellectual disabilities who have problems can often present very nonspecifically (e.g., with social withdrawal or aggression). Service personnel need to be open to considering gender dysphoric issues as a hidden etiology for presenting problems, so that they can support people to access comprehensive assessments and appropriate treatments.
Definitions and Concepts
Intellectual disability is called mental retardation in DSM-IV (American Psychiatric Association, 1994).
Gender dysphoria is a descriptive term meaning unhappiness with biological gender and does not imply a diagnosis.
Diagnostic criteria for gender identity disorder in DSM-IV (American Psychiatric Association, 1994):
A strong and persistent cross-gender identification. In children, the disturbance is manifested by four or more of the following: (a) repeatedly stated desire to be, or insistence that he or she is, the opposite sex; (b) in boys preference for cross-dressing or simulating female attire; in girls, wearing only stereotypical masculine clothing; (c) strong and persistent preferences for cross-sex roles in make-believe play or persistent fantasies of being the other sex; (d) intense desire to participate in the stereotypical games of the other sex; (e) strong preference for playmates of the other sex. In adolescents, and adults, symptoms such as a stated desire to be the other sex, frequent passing as the other sex, desire to live or be treated as the other sex, or the conviction that he or she has the typical feelings and reactions of the other sex.
Persistent discomfort with his or her sex or sense of inappropriateness in the gender role of that sex. In children, the disturbance is manifested by any of the following: in boys, assertion that his penis or testes are disgusting or will disappear or assertion that it would be better not to have a penis, or aversion to rough and tumble play and rejection of male stereotypical activities; in girls, rejection of urinating in the sitting position, assertion that she has or will grow a penis, or assertion that she does not want to grow breasts or menstruate, or marked aversion toward normative feminine clothing. In adolescents and adults, symptoms such as preoccupation with getting rid of primary and secondary sex characteristics or belief that he or she was born the wrong sex.
The disturbance is not concurrent with a physical intersex condition.
The disturbance causes clinically significant distress or impairment in social or occupational, or other areas of functioning.
Fetishistic transvestism is cross-dressing to achieve the appearance of the opposite sex and is associated with sexual arousal.
The first author is also affiliated with South West London and St. George's Mental Health NHS Trust.
Authors: Georgina Parkes, MRCPsych (email@example.com), Department of Mental Health–Learning Disability, St. George's Hospital Medical School, University of London, Cranmer Terrace, London SW17 ORE. Ian Hall, MRCPsych, Islington Learning Disabilities Partnership, 1 Lowther Rd., London N7 8US