A proposed new definition of autism is sure to spark an outcry among parents, professionals and many currently diagnosed with Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). An expert panel appointed by the American Psychiatric Association is currently reviewing the new definition, which is to appear in May of 2013 in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the standard reference for mental disorders in the US. DSM criteria are used in making decisions about research studies, insurance coverage and treatment decisions, so these changes could have a very real impact on people’s lives.
Changes in Diagnostic Criteria and the “Autism Epidemic”
Diagnoses of autism, once considered an extremely rare condition, as well as of related conditions including PDD-NOS and Asperger’s Syndrome, started to increase significantly in the 1980s. Autism is now said to occur in 1 to 100 individuals according to figures from the Center for Disease Control and Prevention; a recent study of school children in South Korea found an even higher rate of 1 in 38 children meeting diagnostic criteria for autism. On seeing such high rates in a condition once estimated to occur in 1 in 10,000 children, some have declared an “autism epidemic.” Some have speculated that various environmental causes were the reason while others have pointed to the expanded diagnostic criteria.
The diagnostic criteria for autism were significantly broadened in the 1987 DSM-R; a child now had to display 8 out of 16 criteria in the areas of social and communicative impairment and in repetitive behaviors. The DSM-IV (1994) and DSM-IVR (2000) specified that a person had to present with six out of twelve criteria in such areas.
New Proposed Criteria Could Exclude Many Now Diagnosed With Autism, PDD-NOS, Asperger’s
The new proposed criteria in the DSM-V introduce a new diagnosis, autism spectrum disorder, that will encompass a number of current diagnoses, Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). The proposed definition can be seen as making the criteria for diagnosis more precise, as they require that an individual present with three deficits in social interaction and communication specifically and at least two repetitive behaviors, to receive an autism spectrum disorder diagnosis.
The first study about the proposed DSM-V criteria have indeed been found to be likely to exclude many who are now diagnosed with autism or related conditions. The “vagueness” of the DSM-IV criteria have, it is thought, led to too many being dignosed with autism. The New York Times summarizes the study:
In the new analysis, Dr. [Fred R. Volkmar, the director of the Child Study Center at Yale University School of Medicine], along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest-functioning and found that over all, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review. The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge.
The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.
The researchers are undertaking a broader analysis that will include 1,000 cases.
All of this may seem overly academic. But the DSM is not called a “Bible” for nothing. Having a different disorder, with a different diagnostic code, can mean a huge difference in the services you qualify for based on your insurance company. A recent Los Angeles Times series about autism noted that some parents have sought a more “severe” diagnosis for their child, on the theory that their child can then qualify for a greater range of services from school districts.
While some criticize such as the opportunistic efforts of parents “gaming” the system, I would underscore that these point to the very real need for services for those with autism and other diagnoses. The New York Times cites the case of a 37-year-old New Jersey woman whose mother underscores how receiving a diagnosis of Asperger’s Syndrome has given her daughter access to disability services that have been life-changing. My teenage son Charlie has always had a diagnosis of autism, plain and simple, and meets the criteria for the new proposed definition of autism spectrum disorder. But a number of my friends’ children have diagnoses of PDD-NOS or Asperger’s and are, understandably, fearful about what the new criteria will mean as far as them continuing to receive valuable services and supports that make it possible for them to go to school amid peers, among much else.
What’s In a Diagnosis?
Dr. Volkmar himself says that the new “autism spectrum diagnosis” in the DSM-V will be focused on those considered “classically autistic” and on the more severe end of the spectrum, such as my son. The “more cognitively able” will face diagnostic confusion and a loss of services and supports, with potentially disastrous results. According to Dr. Volkmar, “the proposed changes would put an end to the autism epidemic,” in the sense that many now diagnosed with autism would no longer be considered to be so. Some psychiatrists and other experts have argued that autism has become too broad and vague a diagnosis to the point that is it “fashionable,” while others defend the current expanded definition of autism as a sign of our greater understanding of autism and of its being more common than earlier thought.
A brief survey of the DSM’s different versions over the years since the first edition was published in 1952 reveals that it might be better to think of it as a work in progress, albeit with monumental impact. Psychiatry and psychology have not always existed and neither has the DSM. What we need to focus on are the potential real-world consequences of the latest changes to the definition of autism in the DSM: Will individuals in need of essential supports and services lose these simply because of a change in criteria? Will the new criteria truly provide much-needed clarity about who is autistic, about what autism is?
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