For the past few years, proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM) have been scrutinized and their merits debated by mental health professionals. Changes in the new manual, due out in May 2013 and meant to reflect new information in neurology, genetics and the behavioral sciences, will likely include new diagnoses such as binge eating disorder and hypersexual disorder and a new category for “behavioral addictions.”
Among the most discussed changes to date include folding Asperger’s syndrome into a category called autism spectrum disorder and adding a diagnosis of temper dysregulation disorder with dysphoria, in part to reduce the number of children diagnosed with bipolar disorder.
The possibility of eliminating Asperger’s syndrome, which first appeared in the DSM only in 1994, has led to great consternation among some diagnosed with the syndrome and Asperger’s advocacy groups.
“Given the very broad definition that they’ve come up with, people with Asperger’s syndrome aren’t going to be identified,” says Dania Jekel, M.S.W., executive director of the Asperger’s Association of New England (AANE). “Just as it was 15 or 16 years ago, they’ll be misdiagnosed. They’ll lose understanding and they’ll lose interventions, especially primary interventions.”
An AANE position paper on the proposed change says the criteria for diagnosis for Autism spectrum disorders “do not include the complete cluster of symptoms found in individuals diagnosed with Asperger’s syndrome,” including certain sensory symptoms, anxiety, executive function problems and right hemisphere learning difficulties.
In the new manual, autistic disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) would also fall under autism spectrum disorder. Rett’s disorder would not be included at all.
The Asperger’s diagnosis has been embraced by many who have received it and has become something of a cultural phenomenon. As Jekel notes, the TV show “Parenthood” and Shonda Schilling’s recently released book, “The Best Kind of Different,” have only brought more awareness to it.
“For bright, and – excuse the term – but quirky individuals, one of their concerns, and rightly so, is that they’ve found an identity, they’ve found each other,” says Margaret Bauman, M.D., director of Learning and Developmental Disabilities Evaluation and Rehabilitation Services (LADDERS) at Massachusetts General Hospital. “They’ve learned they can be quirky and successful, quirky and married.”
Bauman adds that one of the reasons for the proposed change might be to help people with Asperger’s syndrome receive more services. California, for example, provides services to children with autism but not those with Asperger’s.
However, she acknowledges: “From a scientific perspective, I don’t know if, under the microscope, there are enough differences under the microscope [to justify distinguishing Asperger’s from autism].”
Helen Tager-Flusberg, Ph.D., director and principal investigator at Boston University’s Lab of Developmental Cognitive Neuroscience, agrees with this latter point.
“The consensus among researchers in the field is we don’t really see the distinction,” she says, adding that if a clinician were to follow DSM-IV, “99 percent of the people [diagnosed with Asperger’s] would meet the criteria for autism.”
There’s also been a lack of consistency among clinicians, Tager-Flusberg says. “If someone has intact linguistic ability, normal or above-normal intellectual ability… then they would be diagnosed with Asperger’s syndrome. That’s the way people would sort-of use it, but [the diagnosis] has been inconsistently applied.”
Both she and Bauman agree, however, that advances in genetics might someday yield a clearer distinction between Asperger’s and autism.
The new DSM will likely also include a temper dysregulation disorder with dysphoria (TDD) diagnosis. The disorder would be characterized by severe, recurrent outbursts in response to common stressors, with consistently negative mood between outbursts. Part of the reason for adding this diagnosis is to attempt to curb diagnoses of bipolar disorder – essentially, a lifelong diagnosis – in children.
“I’m intrigued by the proposed diagnosis of temper dysregulation disorder,” says David Fassler, M.D., clinical professor of psychiatry at the University of Vermont College of Medicine, via email. “I think it’s an accurate and appropriate description of some, but not all of the children who are currently diagnosed with bipolar disorder, despite the fact that they don’t actually meet the formal criteria. The rationale is that many of these young people do not go on to develop bipolar disorder in adulthood. Instead, they’re more likely to exhibit signs and symptoms consistent with depression and/or anxiety disorders.”
It’s hoped the diagnosis, if approved, “will help facilitate research into the causes and treatment of both bipolar disorder and severe mood dysregulation in children and adolescents,” he adds.
Susy Sanders, Ph.D., a psychologist in Phillips, Maine, who has worked with children diagnosed with bipolar disorder, says the TDD diagnosis will likely lead clinicians to be more careful in assessing children. “I think it’s helpful to try to clarify,” she says. “If it helps us to be more careful with treatment, that’s good.”
Yet the DSM will never be perfect, adds Sanders, who has a son with bipolar disorder and says he would not have met the criteria for TDD or pediatric bipolar. The DSM, after all, is a tool meant to “communicate a common way of understanding a group of symptoms and create treatment programs for them,” she says.
To that end, she adds, “it doesn’t really matter what you call [a problem]. If you treat it and it works, that’s what matters.”