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Leave Intersex Out of the DSM-V

When a child is born with an atypical sex anatomy, often called a disorder of sex development (DSD) or intersex condition, doctors must sometimes make an educated guess about what gender assignment makes the most sense. If the child later decides that the guess was wrong, is that a sign that something is wrong with the child?

There has long been vigorous debate among transgender rights advocates about whether gender identity disorder (GID) should be listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM). With the American Psychiatric Association preparing the new DSM-V, proposed changes to the definition of gender identity disorder have attracted the attention of another community, people born with intersex conditions, or DSD. The latest draft of the DSM-V proposes to expand the definition of gender identity disorder (now tentatively labeled gender dysphoria) to include some people with disorders of sex development (which some prefer to call differences of sexual development).

As the executive director of Advocates for Informed Choice, the only organization in the country focusing on legal advocacy on behalf of children with intersex conditions or DSD, I am very concerned about the move to classify people with intersex conditions who reject their gender assignment as a subtype of the gender dysphoria diagnosis. As things stand now, the presence of a physical intersex condition excludes a person from a diagnosis of GID.

This makes sense. When doctors must make decisions about gender assignment for children with DSD they try to predict what gender identity the child is most likely to develop, based on outcome data about people with similar medical conditions. The latest consensus statement on the treatment of DSD makes predicted gender identity a central criterion for gender assignment. When gender identify is difficult to predict with any assurance, the consensus statement states that doctors can fall back on other factors such as genital shape and surgical convenience. It also recommends allowing the child to reassign sex where the initial assignment turns out to be incorrect. So referring to the desire to change gender assignment as a psychopathology, rather than as evidence of an incorrect medical decision about gender assignment, is at odds with the medical consensus.

Many of my constituents, both affected adults and parents of affected children, are extremely upset by this proposed change. Psychological diagnoses ought not to carry stigma, but they still do and many intersex people do not feel that they should have to take on that stigma as a result of someone else’s incorrect decision. Having this diagnosis in the DSM will also create other legal and medical problems for people with DSD who wish to change their gender assignment:

  • It will make it harder to change gender identity on official documents. So far, Advocates for Informed Choice has been able to argue that barriers that make it harder for transgender people to change their identity documents shouldn’t apply to intersex people because they don’t have a gender identity disorder. So, for example, where a transgender person might have to have genital surgery in order to change identity documents, we have successfully argued that the requirement shouldn’t apply to a person with a DSD.
  • It will make discrimination easier. In most states, where it is legal to discriminate against transgender people, discrimination against intersex people may still be prohibited under the Americans with Disabilities Act. But the ADA specifically excludes people with gender identity disorder from its protection.
  • It will decrease access to health care. Many health insurance policies specifically exclude gender assignment treatment for gender identity disorder. People with DSD have successfully argued that the exclusion shouldn’t apply to them, since by definition they don’t have a gender identity disorder.


It is wrong that transgender people face so much discrimination. But expanding the definition of gender identity disorder in this way will not help transgender people, and it will only increase the discrimination directed at intersex people. Additionally, inclusion in the DSM may encourage clinicians to view the desire to change gender assignment in a child with DSD as a sign that the child needs to be “fixed” rather than a sign that the medical protocol needs refinement. At the very least, if the DSM-V authors persist with this change, they can mitigate the harm by noting in the text that this condition is often iatrogenic.

Inclusion in the DSM-V remains a hot topic in the transgender community. The availability of a psychological diagnosis has benefits that some feel outweigh the cost in terms of stigma and discrimination, because having a diagnosis can give legitimacy to claims for medical care or to legal claims. For intersex people, however, there is already a medical diagnosis available. Adding a psychological diagnosis will increase stigma and can only decrease access to legal rights and health care. It is the responsibility of mental health providers to refrain from actions that will harm their patients. There is no benefit to this population from inclusion in the DSM-V, and I hope the authors will reconsider.

Anne Tamar-Mattis, an attorney, is executive director for Advocates for Informed Choice.;

Published on: June 17, 2011
Published in: Health and Health Care

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