Features | Misdiagnosing difference

The new edition of the principal psychiatric manual, open to public comment for the first time, has the potential to revise stigmatizing diagnoses

On February 10, the American Psychiatric Association (APA) released a draft version of the fifth edition of its Diagnostic Statistic Manual (DSM). The DSM is widely-used both inside and outside the United States as a reference for mental disorders. The fifth edition (DSM-5) intends to add, remove, or modify many diagnoses, which would have sweeping effects on mental health.

The DSM has an immense influence on worldwide health standards. For example, the World Health Organization (WHO) attempts to synchronize its medical diagnoses, published in the International Statistical Classification of Diseases and Related Health Problems (ICD), with the DSM. As a result, any changes in the DSM will likely have an impact on a diagnosis system used worldwide. In addition, the DSM affects other fields, such as law. This February, the U.S. Tax Court ruled that Rhiannon O’Donnabhain, a transwoman, could deduct transition-related expenses, like hormone replacement therapy and sex-reassignment surgery, in a decision relying heavily on her “Gender Identity Disorder” diagnosis. Terms popularized in the DSM also pervade popular culture, including post-traumatic stress disorder, obsessive-compulsive disorder, and attention-deficit disorder.

The DSM has a particular impact on which genders and sexualities our society considers “normative” – the way gender and sexuality should be – due to its history of listing variations of gender and sexuality as mental disorders, like sadism, masochism, homosexuality, and transsexuality.

Though the DSM revision team still has the power to determine which conditions are mental disorders, this time the revision process is more open to the general public. For the first time, a draft version of DSM is open for public comment before publication. The APA has also moved to increase the transparency of ties between members of the revision team and the pharmaceutical industry, likely due to critics’ concerns that such ties could lead to the creation of new diagnoses that fit the interests of drug companies rather than the public good.

A history lesson
The idea of classifying mental disorders in the United States arose mainly from the need to collect census information during the 19th century. In 1917, a “Committee on Statistics,” the organization that became the APA, along with the National Commission on Mental Hygiene, developed a new guide for mental hospitals that included 22 diagnoses. During the Second World War, psychiatrists aided in the care of soldiers, an indication of a general move toward clinical treatment instead of incarceration in mental institutions. This shift led the army to develop a new classification scheme called Medical 203 in 1943.

In 1949, the WHO published the sixth revision of the ICD, which contained a subset on mental health. The APA decided to modify the existing nomenclatures specifically for use in the United States, leading to the creation of the first DSM in 1952. This version contained 106 mental conditions and followed an approach to psychiatry that considered relationships between conscious and unconscious factors developed by Sigmund Freud, which lasted until the third edition adopted a medical model.

Diagnosing sexuality
Paraphilias as defined by the current DSM are sexual conditions consisting of “recurrent, intense sexually arousing fantasies, sexual urges or behaviours generally involving (1) nonhuman objects, (2) the suffering or humiliation of oneself or one’s partner, or (3) children or other nonconsenting persons that occur over a period of six months” (Criterion A), which “cause clinically significant distress or impairment in social, occupational, or other important areas of functioning” (Criterion B). This diagnosis arose from a history of linking sexual “deviance” with mental “disorders.”

The inclusion of a “sexual disorder” within the DSM depends partly on the stigmas and perceptions of contemporary normative sexuality. The mainstream acceptance of only heteronormative, non-kinky sex often leads to alienation and resentment toward those of us who do not fall into that category. As a result, we’re critical of these developments, though we recognize that others may find psychiatric labels empowering or effective descriptions of their identities.

Although descriptions of non-normative sexual desire have existed – probably – since the dawn of time, they did not reach wide-spread medical and psychiatric attention until the mid to late 19th century. In 1886, Richard von Krafft-Ebing, a famous German psychiatrist, published a groundbreaking but problematic book describing non-normative sexuality entitled Psychopathia Sexualis. This book coined the terms sadism and masochism, and is often erroneously credited with introducing the word homosexual (in fact, Hungarian writer Karl-Maria Kertbeny first used this word in a private letter in 1869).

Psychopathia Sexualis paved the way for psychiatrists to label non-normative sex as deviant and a mental condition. The DSM-I listed sexual deviation as a diagnosis under personality disorders – its description is short and vague. The DSM-II created the category of “Sexual Deviations,” which included homosexuality, fetishism, pedophilia, transvestism, exhibitionism, voyeurism, sadism, masochism, and “other sexual deviances.” In 1973, the Board of Directors of the APA removed homosexuality from sexual disorders, a decision ratified by a vote in 1974. However, it retained ego-dystonic homosexuality – a condition in which the patient wants to engage in heterosexual sex, but cannot maintain arousal and where lack of arousal causes significant distress – until 1986. The most recent edition, DSM-IV-TR, lists many new forms of sexual “disorders” including frotteurism (touching or rubbing against a non-consenting person), and dyspareunia (a little-understood disorder that involves pain during sex).

The DSM-5 preserves the same paraphilias as the current model. In addition, it adds the diagnoses of hypersexual disorder, paraphiliac coercive disorder (thoughts, and/or acts of forcing sex upon a non-consenting person), and sexual arousal disorders in men and women.

Diagnosing gender
Transsexualism entered in the third edition of the DSM, created in 1980. Previously, transsexuality was only in the ICD, a medical rather than strictly mental health reference guide. Under the current edition of the DSM, mental health specialists can apply a number of diagnoses to trans individuals. The first is “Transvestic Fetishism” (TF), which applies the paraphilia model to straight-male cross-dressing. The second is “Gender Identity Disorder” (GID), divided into three categories: one for children, another for adults, and another called “Gender Identity Disorder – Not Otherwise Specified,” a catch-all label for anything the DSM cannot easily categorize and includes intersex people who reject their assigned sex.

Each has had its own problems. For example, TF applies a double-standard to men and women, in which only men are capable of transgressing enough for the label to apply. It labels femininity as undesirable in a way masculinity is not; it’s not a disorder for women to dress as men. Children diagnosed with GID are most commonly not trans and instead are developing into adults with same-gender attractions. This is largely because the criteria for GID in children relies heavily on divergence from gender norms. Under the fourth edition of the DSM, a child could receive a GID diagnosis based on wearing gender-variant clothing, preferences for “cross-sex roles” in play or fantasies, a desire to participate in the “games and pastimes of the opposite sex,” and preferring “playmates of the opposite sex,” regardless of whether they actually wanted to be a member of the “opposite sex.” The adult GID listing provides no way for diagnosed individuals to later lose the label. All the GID variants are subject to criticism because the word “disorder” has negative connotations that interfere with care.

The DSM-5 is maintaining all of these diagnoses, though the names and criteria for them are changing. “Transvestic Fetishism” is becoming “Transvestic Disorder,” while GID is becoming “Gender Incongruence,” though with the same three sub-groupings.

To some degree, these new definitions are progressive. The name change to Gender Incongruence reflects trans people’s criticisms that the term “disorder” stigmatizes their identities. A shift from “sex” to “gender” in the diagnostic criteria now allows trans people who have medically transitioned to avoid a lifelong GID diagnosis. The DSM-5 would also allow for people to have alternative genders besides male or female.

These changes may lead to some more hopeful outcomes, though the inclusion of any trans diagnosis in the DSM can provide those hostile to trans people with an opportunity to suggest that gender variance is a mental illness. Transgender blogger Antonia D’Orsay has raised the possibility that a trans diagnosis, like Gender Incongruence, could be removed from the DSM due to belief changes within the mental health community, which increasingly sees a problem with society rather than trans people and notes that medical responses, such as hormones, are often more effective than psychotherapy. However, removing the diagnosis from the DSM is unlikely to occur unless the WHO includes a suitable diagnosis in its guidebook, the ICD, since a medical diagnosis is often necessary for insurance coverage. A draft revision of the ICD is due this May.

The Gender Incongruence diagnosis will also recognize the possibility of intersex people seeking care, under the term “disorders of sex development.” However, some intersex advocacy organizations, such as the Organisation Internationale des Intersexes, oppose this terminology. This raises the question of what the DSM will do with its “Gender Incongruence – Not Otherwise Specified” listing, which remains in the draft version with a note saying that the revision team is still examining it.

The DSM-5 has not removed any of the previous criteria for GID in children, though it now requires more criteria for diagnosis, including indicators associated with the adult diagnosis, such as dislike of one’s genitalia or a “strong desire to be of the other gender or an insistence that he or she is of the other gender.” But Gender Incongruence maintains the sharp division between adolescents and adults, and children, who, according to the DSM-5 draft, cannot have gender identities besides male or female.

However, the inclusion of “Transvestic Disorder” only serves to continue the stigmatization of wearing gender-variant clothing, with an even more devaluing label. The new diagnosis can apply to even more people – including both straight and queer men and male-to-female trans people. What’s worse, the revised listing includes references to “autogynephilia,” a theory that holds that transwomen attracted to women are really men aroused by the thought of themselves as women. Under this model, trans women attracted to men are really just “homosexuals,” and there’s no explanation of female-to-male trans people. Apart from these inconsistencies, however, this thinking devalues the self-identities of trans people. As a result, many trans people oppose “autogynephilia,” though some have taken the term as an identity (for an example, see autogynephiliac.blogspot.com).

Not-so-secret agents of revision
The members of the DSM revision team have an immense influence on the conditions included, their names, and the criteria necessary for diagnosis. Kenneth Zucker and Ray Blanchard, two psychiatrists at the Centre for Addiction and Mental Health, a teaching hospital affiliated with the University of Toronto, received positions in the “Sexual and Gender Identity Disorders” working group. Zucker, the head of the group, has advocated reparative therapy for gender-variant children, believing that transitioning is a bad outcome. Ex-gay organizations, such as the National Association for Research and Therapy of Homosexuality, have featured his work. Blanchard, in turn, became the head of the sub-working group on paraphilias, and is one of the creators of the autogynephilia model of male-to-female trans people. The DSM’s inclusion of “Transvestic Disorder” with reference to autogynephilia and “Gender Incongruence in Children” is unsurprising given the role that Zucker and Blanchard have played in the revision, but it’s troubling that the APA decided to include them. Regardless of their motives, these theories promote the idea that trans people’s self-identifications and reasons for transitioning are not worthy of respect, which contributes to societal biases against them.

Shortly after the announcement of Blanchard and Zucker’s appointments in May 2008, trans people and their allies started a petition, “Objection to DSM-V Committee Members on Gender Identity Disorders.” It received 9,535 signatures over a two-month period. While that effort did not dissuade the APA from including them on the revision team, it demonstrates that their appointments are controversial.

The demographics of the revision team also disproportionately favour members of dominant groups. For example, the DSM-5 task force, the group leading the revision, has 27 members. Of these, 21 present as male. A slightly smaller proportion of the group is visibly white. However, the task force does have one member who openly states that they have bipolar disorder, ensuring that at least one member has experience on the other end of mental health care.

Lisa Cosgrove, clinical psychiatrist and assistant professor at the University of Massachusetts Boston, has analyzed both the DSM-IV and DSM-5 revision teams for conflicts of interest with pharmaceutical companies. In a 2006 study, Cosgrove and her colleagues found that 56 per cent of the DSM-IV revision team’s members had financial ties with the pharmaceutical industry. Such ties include holding stock, providing expert witness testimony in legal cases, and gifts such as paid travel expenses, among others. With this revision, the proportion of contributors with financial ties increased to 70 per cent, according to a 2009 article by Cosgrove and Harold Bursztajn, an associate professor of clinical psychiatry at Harvard Medical School.

These financial ties may have led to the creation of new diagnoses – or diagnoses aimed at providing customers for certain drugs. One such example may be post-menstrual dysphoric disorder (PMDD). Pharmaceutical companies have advertised their products as ways of treating PMDD. But outside the United States, PMDD is seldom regarded as a medical issue. For example, the ICD does not include it. The inclusion of such disputed diagnoses seems to benefit the pharmaceutical industry.

The APA now requires all members of the revision team to disclose their ties to other organizations, for-profit and non-profit. However, criticism of these financial ties remain. Cosgrove said, “Transparency is a step in the right direction, but transparency is not enough.”

Each revision team member’s disclosure page also includes a pledge to limit pharmaceutical industry contributions to a maximum of $10,000 per year. However, the APA has not publicly detailed how it would enforce these caps. Cosgrove argues that social psychology literature shows that a small gift may not be irrelevant. Even receiving a slice of pizza from someone is likely to make you more favourable towards them. “We need to recognize that small gifts can affect behaviour,” she said.

We can only wonder how the DSM-5 would differ if the revision team had been different. But these composition issues raise serious concerns about the potential biases of the revision team.

Speak your mind
We believe that the DSM should not include any stigmatizing diagnoses of human sexuality, including the paraphilias slated to be part of the DSM-5 (except possibly pedophilia). We believe that APA should not apply the paraphilia model to trans people through “Transvestic Disorder” and its “autogynephilia” sub-classification. And we’re concerned about the inclusion of controversial figures in the revision, including Zucker and Blanchard, as well as people with financial ties to the pharmaceutical industry.

You may disagree. Regardless, if you have any thoughts on the DSM, please participate in the public commentary process at dsm5.org. The comment period ends April 20, 2010.


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