The way psychiatrists describe childhood mood swings, gender identity, autism and dozens of mental health disorders could soon change drastically.
The American Psychiatric Association (APA) is in the midst of massive revisions to the Diagnostic and Statistical Manual of Mental Disorders, better known as the DSM. This tome is the repository of diagnostic criteria for everything from schizophrenia to insomnia.
The implications are far-reaching, from how a disorder is named and so how it's viewed by the public to whether treatment for the disorder gets covered by health insurance. For instance, the naming and inclusion of gender-identity issues could affect insurance coverage for sex reassignment surgery or hormones for adults. And naming a disorder can be the best thing for those suffering symptoms and not knowing what they have.
The revisions for the 5th edition are sparking debate among patients, psychiatrists and the public at large. In fact, the history of psychiatry is littered with controversial psychiatric disorders.
Everyone we know in our community, we're asking them to respond to the DSM-5," said Dania Jekel, the executive director of the Asperger's Association of New England, an organization which disapproves of the DSM-5's proposed deletion of the Asperger's diagnosis. "We're trying to be as loud and active as we possibly can."
(Asperger's syndrome is considered an autism spectrum disorder and affects a child's ability to socialize and communicate effectively.)
Jekel is one of many hoping to be heard in the discussion over what will be in the final DSM-5. The proposed changes are now available on the APA's Web site, where individuals can submit comments in a once-in-a-decade chance to be heard by the architects of the psychiatrists' bible.
(While past versions used Roman numerals, future revisions will be labeled DSM-5, DSM-6, and so on.)
Overhauling the DSM
The DSM is hugely important to psychiatry. Insurance companies use it to determine what disorders get coverage, and inclusion can also affect research money. Overhauling it, which happens every seven to 16 years or so, is always controversial. This round is no exception.
Advocacy groups of all kinds have called for their members to contact the APA.
The Child and Adolescent Bipolar Foundation sent out a statement lauding the proposed creation of temper dysregulation with dysphoria, which describes chronically irritable children who have frequent and extreme temper tantrums. But the statement also urged parents to contact the APA and ask them to change the name to something that wouldn't conjure up images of "inept mothers" and "bratty kids."
The International Foundation for Gender Education, meanwhile, put up an online petition lobbying for the removal of transvestic disorder, which they argue stigmatizes cross-dressing and pathologizes variant gender expression.
Other proposed modifications include:
- Name change from "mental retardation" to "intellectual ability;"
- Introduction of "behavioral addictions," such as gambling;
- Creation of several new diagnoses, such as hypersexual disorder and binge eating disorder.
The changes would add "risk syndromes" in some categories to try to catch disorders before they become full-blown mental illnesses.
From identity disorder to incongruence
All of these revisions have supporters and detractors, but perhaps the most controversial edits have to do with sex. Gender identity disorder, in which people feel that their physical gender doesn't match their psychological gender, may become gender incongruence. The change is a positive step toward a less-stigmatizing name, said Oakland psychologist Diane Ehrensaft, who was not part of the DSM revision committee.
But even the inclusion of gender incongruence is fraught with controversy. Proponents, including Kenneth Zucker, a University of Toronto psychologist and head of the DSM Sexual and Gender Identity Disorders Work Group, say that without a diagnosis, insurance companies won't pay for sex reassignment surgery or hormones for adults.
Opponents, like Ehrensaft, counter that insurance companies shouldn't dictate psychiatric diagnosis and argue that the disorder has to go. Many gender-fluid people live happily without ever seeing a psychologist, Ehrensaft said.
"Our job is to support children, adolescents and adults to be able to carve their own path," she said.
"Suddenly everything made sense"
Sometimes, having a name for the problem is the first step in getting well. That's what worries Jekel, the Asperger's advocate, about the proposal to drop the Asperger's label and re-categorize people with the disorder as having high-functioning autism.
"Before the DSM-IV came out, there were so many people who were struggling," Jekel said. When that edition introduced Asperger's, she said, "It just gave people something, a name, a label for what they had."
The APA proposals state that there is too much diagnostic overlap between autism and Aperger's to justify keeping them separate. But that doesn't make sense to Jekel. Her own son has Asperger's, and when he was originally diagnosed as autistic, the symptoms didn't match.
"There were so many things that didn't fit," she wrote in a statement she intends to send to the APA. When she finally read about Asperger's, "Suddenly everything made sense…I felt like I was reading a manual on my child."
Without the diagnosis, Jekel worries that people with Asperger's will fall through the cracks. One person with the disorder e-mailed her to say that without the Asperger's label, she would have committed suicide.
It remains to be seen what changes will make it into the DSM-5. Even as comments like Jekel's pour in on the APA Web site, the organization is gearing up for field tests of their proposals. After another period of public comment and research, the APA expects to publish the DSM-5 in May 2013. It's a long process, but those with something to say should get cracking: The current public comment session closes April 20.
