People with Asperger's syndrome would be included in the same diagnostic group as people with autism and pervasive developmental disorders, according to new guidelines under consideration by the American Psychiatric Association.
Psychiatrists are in the process of revising the guidelines, known as the Diagnostic and Statistical Manual of Mental Disorders. The manual has implications for how psychiatric drugs are developed and prescribed, what treatments get covered under insurance plans, which approach doctors take in treating their patients, and how patients view their own identities.
Anyone who has received a diagnosis from a mental health professional has most likely had his or her symptoms defined by the guidebook.
The revisions, which will be in the DSM's fifth edition, due in 2013, were made public Wednesday at DSM5.org.
The proposal for a single category for autism that encompasses a broad range of conditions is generating debate.
Scientifically, the distinction is correct; the research on people with these conditions has shown that Asperger's is on the mild end of the spectrum of autistic disorders, said Dr. Michael First, professor of clinical psychiatry at Columbia University, who worked on the version of the DSM that is currently in use.
Of concern is that Asperger's has been destigmatized and autism has not, he said. Over the past 15 years, communities have formed around Asperger's, and the condition has taken on more positive tones with the notions that Albert Einstein and other intellectual luminaries may have had it.
Given that Asperger's has become more acceptable, First favors keeping it as a diagnosis.
"This is a case where the science of the decision and social ramifications of the decision are separate," First said.
But the DSM does not make diagnoses based on the stigma of one group over another, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.
"Many people prefer to use the term Asperger's, and we're not saying that you can't describe yourself that way," she said. But the research shows "no scientific evidence that there are separate syndromes."
The term Asperger's has become too vague and may currently prevent some children from receiving the assistance they need at schools that offer "autism" services and don't necessarily include them, Lord said.
The new criteria require that the symptoms begin in early childhood and that deficits be measured in two areas: social interaction and communication, and the presence of repetitive behaviors and fixated interests and behaviors.
First also takes issue with "psychosis risk syndrome," a proposed classification of the set of symptoms that sometimes precede schizophrenia. For example, milder versions of delusions, disorganized speech and hallucinations fall under this. In First's analysis, however, only 20 percent of people with this set of early symptoms would go on to develop schizophrenia.
That means "an unusual and unconventional adolescent who has a very rambling writing and speaking style, whose parents are concerned about the fact that their son is different, could qualify for this disorder," he said.
This kind of diagnosis could ruin this person's life, affecting his social life and college plans, and landing him on antipsychotic medications with strong side effects.
But Dr. Charles Raison, psychiatrist at Emory University, said there is some evidence that looking for psychosis early has tremendous benefits.
The psychiatric association's rationale for considering psychosis risk syndrome is that psychotic illness is most effectively treated early and that intervening early may have long-lasting benefits not achievable with later therapy, the proposal said. But moving forward on putting this on the list of disorders, or in the appendix, depends on field trials.
First and Raison both lauded the association for proposing to get rid of the terms "substance abuse" and "substance dependence" and putting them under one name: addiction and related disorders, with the subheading "substance use disorders."
Problems with thinking and memory, known as neurocognitive disorders, have been divided into "major" and "minor," said Dr. Dan Blazer, professor of psychiatry at Duke University School of Medicine. In the past, people with "minor" impairments -- for example, minor dementia -- may not have been covered by insurance, and reframing the conditions in this way would include them, he said.
"Many people come seeking help because they are having some difficulty with their cognition but don't qualify for a diagnosis currently," said Blazer, who was part of the committee to revise the neurocognitive disorder criteria. "These are people that clearly need to be seen, and there's a very good reason for them to be seen."
At the same time, psychiatrists have recommended getting away from the word "dementia" because it has "outgrown its time," Blazer said. Dementia does not accurately describe what's going on in a person with cognitive impairment, he said.
The term will probably not disappear completely. For instance, it has not been decided whether "vascular dementia" ought to be renamed, he said.
Taking "dementia" out will probably not cause the same degree of controversy as decisions regarding autism classification because the proposed changes simply clarify what "dementia" actually means, he said.
First, however, is skeptical of this move.
"It feels to me like they're fixing a problem that wasn't there," he said. "No one has ever said to me, 'There's a problem with the word "dementia." ' "
Blazer's group also proposed using biological markers as guides for diagnosis. For example, several studies are ongoing to identify the signatures of Alzheimer's disease in brain scans. No such tests are currently required by the DSM, but the revisions note that they are useful in ruling in or out certain conditions.
"We are moving toward trying to include some kind of more quantitative assessment of the severity of the condition, which will help us in this major-minor distinction," Blazer said.
The proposed revisions also include new classifications for learning disorders. The new category "learning disabilities" will have the subcategories of dyslexia, related to reading, and dyscalculia, related to mathematics. This is a further specification of what academic skills should inform a diagnosis, Lord said.
The committees do not take insurance or drug company opportunities into account when crafting revisions to the DSM, she said. But First noted that the DSM does have these implications.
"Any new disorder added provides an opportunity for a pharmaceutical company to develop a new drug," First said.
But Raison said the era of trying to treat an entire diagnosis is over, meaning the DSM V may have less of an impact than its predecessors in generating new drugs. As psychiatrists realize that mental illness diagnoses are sometimes vague descriptions rather than biological entities, there is a movement toward treating individual symptoms, he said.
"We're in a bit of a backlash right now, and I think the golden age of just taking these psychiatric diagnoses as if they're real things that exist in nature, I think those days have been winding down," he said.
The new criteria will be available for public comment at DSM5.org until April 20. They will reviewed and refined over the next two years, during which time the American Psychiatric Association will conduct field trials to test some of the proposed revisions in real-world clinical settings.
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