Autism diagnosis expected to improve with release of DSM-5
■ A heavily debated change was grouping four autism-related classifications from DSM-IV into one diagnosis — autism spectrum disorder.
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Physicians say they have struggled for years to diagnose children with autism accurately.
Among the challenges are the broad spectrum of disability levels seen in such patients and an unclear distinction between Asperger’s syndrome and other autism-related conditions, said Baltimore pediatrician Paul H. Lipkin, MD.
“It’s been problematic distinguishing whether children with higher skill levels have Asperger’s or another variation in autism,” said Dr. Lipkin, director of the Center for Development and Learning at the Kennedy Krieger Institute in Baltimore. The institute cares for people with disorders of the brain, spinal cord and musculoskeletal system.
The uncertainty has resulted in some children with autism not receiving the most appropriate care, health professionals say.
Such diagnostic challenges are expected to lessen with the approval of final criteria for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The criteria were approved unanimously Dec. 1 by the American Psychiatric Assn. Board of Trustees and are set to be published in spring 2013.
The board’s action marks the end of a comprehensive revision process, which spanned more than a decade and included contributions from more than 1,500 international experts in fields such as pediatrics, psychiatry and social work, the APA said.
Draft revisions of the DSM-5 were posted online for health professionals and others to examine and comment on. During the process, more than 13,000 website remarks and 12,000 comments from emails and letters were received, said APA President Dilip Jeste, MD.
The “APA has carefully sought to balance the benefits of the latest scientific evidence with the risks of changing diagnostic categories and criteria,” he said. “We believe that DSM-5 … will optimally serve clinical and public health needs.”
Goal of more consistent diagnosis
Among the most contentious updates in the DSM-5 is the grouping of four autism-related classifications from DSM-IV into one diagnosis — autism spectrum disorder. The four affected classifications are: Asperger’s syndrome; autistic disorder; childhood disintegrative disorder; and pervasive developmental disorder, not otherwise specified.
The intention of the change is to make identifying ASD less confusing for physicians and create more consistent diagnoses for the condition, said Catherine Lord, PhD, a member of the DSM-5 neurodevelopmental disorders work group.
“The logic was, people use Asperger’s to mean so many different things. … There really are no two people or major diagnostic centers that use [the diagnosis] in exactly the same way,” said Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. “This created enormous amounts of confusion.”
Lord hopes the new ASD criteria will lead more health professionals to focus not just on a patient’s ASD diagnosis but also on the individual’s skill level.
“The autism diagnosis itself is the first step,” she said. It is more meaningful to families to be able to discuss the child’s skill level than to simply say the child has ASD, she added.
Another significant change on ASD is a decrease in the number of symptom domains for diagnosing the neurodevelopmental disorders from three to two. In DSM-5, ASD will be characterized by abnormal functioning in social communication and repetitive behaviors, Lord said.
Autism groups respond
Autism organizations have had a mixed response to the ASD updates in DSM-5.
Autism Speaks, the nation’s largest autism science and advocacy organization, said it’s cautiously optimistic about the changes. “Going forward, it will be crucial to study how the new criteria function in real world community settings,” said Geraldine Dawson, PhD, chief science officer of Autism Speaks.
The Maryland-based Autism Society expressed concern that the revisions could lead children with ASD to lose access to services, such as those that help improve educational performance, language skills and socialization.
Dr. Lipkin has heard similar worries about loss of services from the families of his autistic patients. He assures parents that services are based on an individual’s disabilities, not on the diagnosis. He tells them, “If a child is having problems in the behavioral or language domain, they will continue to get the help they need.”
The change in diagnostic criteria for ASD could be particularly difficult to accept for parents with children who have been classified as having Asperger’s syndrome, Dr. Lipkin said. That diagnosis often is given to youths who are higher-functioning.
“A lot of families are afraid to shed that [classification for the more general ASD diagnosis] because in some ways, that takes away their hope for their children,” Dr. Lipkin said.
To address that issue, Lord recommends that physicians explain to families that the ASD diagnosis simply means the child has a particular combination of social and communication difficulties and repetitive behaviors. She encourages doctors to tell parents that an ASD diagnosis does not indicate how a child will fare later in life.
“Some children with ASD will do very well and be quite independent,” Lord said.
Other changes approved for the DSM-5 include:
- Moving binge eating disorder from the appendix of DSM-IV to the body of the new manual.
- Adding the new condition of excoriation (skin-picking) disorder to the obsessive-compulsive and related disorders chapter.
- Creating a new section on trauma- and stressor-related disorders.
Similar to DSM-IV, the DSM-5 will be accompanied by a version that is tailored to primary care physicians, said James H. Scully Jr., MD, CEO and medical director of the APA. It focuses “on the more common disorders seen in primary care, and it’s shorter [than the standard DSM-5]. It doesn’t have a lot of esoteric things.”
The APA hopes to publish the primary care version in 2013, but the date is not definite.
“We developed DSM-5 by utilizing the best experts in the field and extensive reviews of the scientific literature and original research,” Dr. Jeste said. “Our hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services and improved patient outcomes.”