January 25, 2012 — Concerns that proposed changes to autism criteria in the upcoming Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) will exclude many individuals from diagnosis and treatment are unfounded, says the American Psychiatric Association (APA).
These changes would include merging diagnoses currently listed separately in the DSM-IV, such as autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (NOS). The DSM-5 proposal calls for incorporating these disorders under a single umbrella category of "autism spectrum disorder."
"The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder," said James Scully, MD, medical director of the APA, in a release.
"While final decisions are still months away, the recommendations reflect the work of dozens of the nation's top scientific and research minds and are supported by more than a decade of intensive study analysis," the APA states in the same release.
Although some organizations and clinicians have expressed concerns that the new criteria will result in the exclusion of many individuals previously diagnosed with the disorder, particularly those with high functioning forms of autism, Neurodevelopmental Work Group member Bryan H. King, MD, told Medscape Medical News that that will not be the case.
"I think it is very unlikely that there's going to be a group left out in the cold," said Dr. King, who is also a professor and vice chair of psychiatry and behavioral sciences at the University of Washington and director of the Seattle Children's Autism Center at Seattle Children's Hospital.
"We believe that we are going to be able to better characterize individuals with autism, in part because of clearer criteria that have been written to better account for people across the age span. And one could argue that this will actually make it easier for adolescents and adults, and even young children potentially, to meet criteria for diagnosis than was previously the case."
Public Feedback: Round 3
With print and electronic versions of the DSM-5 less than a year and a half away from being published, concerns continue to be voiced over several of the criteria changes recommended by the various work groups.
As reported by Medscape Medical News, changes have included proposed inclusion of caffeine withdrawal syndrome, "disordered gambling," and cannabis withdrawal under the newly renamed "substance use disorders" chapter; cutting down the current 10 categories of personality disorders to 6; and the Mood Disorders Work Group's recommendations for revising criteria for mixed episodes within bipolar disorders.
In August 2011, right after the second public feedback period for the DSM-5 had ended, David Kupfer, MD, chair of the manual's Task Force, said that all of the work groups would use the feedback to ensure that the final criteria recommendations could be practically implemented in clinical settings.
"I think the most important thing is that everyone realizes we are not making changes randomly. What we're trying to do is update the scientific, empirical, and public health basis of mental health diagnoses," Dr. Kupfer told Medscape Medical News at the time.
A third public feedback period is scheduled to begin this spring.
Improved Sensitivity, Specificity
According to the Neurodevelopmental Work Group, autistic disorder, Asperger's, childhood disintegrative disorder, and pervasive developmental disorder NOS represent mild to severe symptoms of autism and its related disorders instead of providing "a simple yes or no" diagnosis to a specific disorder.
They note that this would change under the proposed encompassing name of autism spectrum disorder, which would specify both range of severity and an individual's overall developmental status. The status report would include appraisals of social communication and other cognitive and motor behaviors.
"The draft DSM-5 criteria will provide a more useful dimensional assessment to improve sensitivity and specificity," notes the APA.
"This change will help clinicians more accurately diagnose people with relevant symptoms and behaviors by recognizing the differences from person to person, rather than providing general labels that tend not to be consistently applied across clinics and centers."
"We came to a place where it seemed compelling, based on the evidence, that carving up the autism spectrum into discrete entities based on the severity of the symptom or on the developmental trajectory really didn't make sense," added Dr. King.
He said that, for example, a separate definition for high blood pressure would not be created if the diastolic measurement was significantly higher than a specified cutoff point, or a new category of pneumonia would not be created if it also included a high fever.
"Over time, the different disorders within the autism spectrum were being used as proxy measures of severity. Neither the genetics nor the trajectories of the disorders themselves supported these categorical distinctions," said Dr. King.
"In fact, as someone improved in terms of symptoms, he could literally move from 1 disorder into another. So we decided it made more sense to merge all of these into a single autism spectrum disorder category."
Getting it Right
Although Dr. King said that concerns over the possibility that the revisions will result in the exclusion of some individuals, putting them at risk of losing much needed services such as special education programs, are not really valid, he reported that the phones at his center "have been ringing off the hook" with questions about these issues.
"I've heard some of these concerns expressed and certainly appreciate that anytime you hear that criteria for a disorder are being changed, it's reasonable to ask whether someone will still make it in that has been previously diagnosed," said Dr. King.
"But there has never been an agenda for us to restrict or limit the numbers of people diagnosed with autism. We've only wanted to get the criteria right."
He added that these criteria changes for autism were actually released "well over a year ago," in time for the first round of public review and commentary.
"When these were first released, people were raising concerns about them being too inclusive and that we were 'opening up the flood gates.' Now there's concern that the criteria have become too narrow," he noted.
He added that both the DSM-IV criteria for autism-related disorders and the proposed DSM-5 criteria for autism spectrum disorder have basically the same descriptions.
"We've just moved from the idea that you need 2 criteria from column A, 1 from column B, 1 from column C, and 1 additional criterion that could land in any of those categories to one requiring all 3 manifestations of impairments and social communication and interaction," explained Dr. King.
"We're also now requiring 2 measures of restrictive repetitiveness behaviors and interests. And we added hyposensory interests or functions, which is new. So one could argue that that makes it easier to meet the criteria. We're also adding dimensional descriptors, which will allow us to still capture the difference in level of function that an individual may have — but more simply and effectively."
All proposed criteria changes for the DSM-5 are being tested in field trials. The portion of the trials conducted at academic centers concluded last October; the routine clinical settings trials are expected to be completed around March of this year.
According to the APA, field testing has not indicated "that there will be any change in the number of patients receiving care for autism spectrum disorders in treatment centers — just more accurate diagnoses that can lead to more focused treatment."
"In other words, those who were previously diagnosed with 1 of the autism-related disorders remained diagnosed with what is now autism spectrum disorder in the clinical settings," said Dr. King, adding that clinicians "are in a great position" to reassure families about these proposed changes.
"In the worst case scenario, if the label by which one captures that problem changes, then a different label will emerge in its place. There will always be a way to capture the need for treatment."
He noted that the renewed interest in these proposed changes were probably prompted by a recent presentation at the Icelandic Medical Society that stated that many people "would not keep their diagnoses."
"That stirred things up. But I wouldn't want to even suggest that people with a current diagnosis of autism are going to lose it with the new criteria going forward. Instead, we hope that better identification will lead to better interventions."
"It's unfortunate that patients and families are being scared in this way. And anything we can do to allay those fears will be very important," said Dr. King.
Final publication of the DSM-5, in both print and electronic versions, is planned in time for the APA's Annual Meeting in 2013. Information on current DSM-5 recommendations can be found on its Web site.
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