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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