The End of Asperger’s Syndrome
It’s official: Asperger’s Syndrome has been dropped from the Diagnostic and Statistical Manual of Mental Disorders (DSM) which contains the diagnostic criteria for psychiatric disorders and is often called the “bible of psychiatry.” When DSM-V (the next edition of the influential manual) appears in 2013, it will no longer list Asperger’s as a distinct condition, but describe its symptoms under the newly created “autism spectrum disorder” (ASD).
That is, the one umbrella diagnosis of ASD will now be used for those who are on the “severer” end of the autism spectrum like my teenage son Charlie who has very minimal speech and intellectual disabilities and for those who might be (for instance) technical writers in Silicon Valley with various social and sensory challenges.
Since the possibility of removing Asperger’s from the DSM-V was announced two years ago, there has been a huge and impassioned outcry — and a lobbying effort to keep the Asperger’s diagnosis — among individuals diagnosed with Asperger’s as well as the parents of children with the diagnosis. Families have been concerned that a child will lose education and other services, with potentially drastic results on their learning and even their future (one study indeed found that many with an Asperger’s diagnosis would be excluded under the new criteria for ASDs). Adults who have come to identify themselves as Asperger’s and/or Aspies have objected to the literal elimination of Asperger’s.
Why Does the Psychiatry Profession Want To Remove Asperger’s From the DSM-V?
The “vagueness” of the DSM-IV criteria has led to too many being diagnosed with autism, say some professionals.”
As Dr David Kupfer, the University of Pittsburgh psychiatry professor in charge of the DSM revisions says, the intent behind the revisions was “not to expand the number of people diagnosed with mental illness but to ensure those affected were more accurately diagnosed so they could get the most appropriate treatment.”
The Definition of Autism Has Undergone Many Changes In a (Relatively) Short Time
“Early infantile autism” was first described in 1943 by Leo Kanner. Asperger’s was recognized as a separate diagnosis in 1981, though it would not be until 1994 that the American Psychiatric Association recognized Asperger’s as a distinct condition.
A brief survey of the DSM’s different versions over the years since the first edition was published in 1952 reveals that, far from being a definitive “written in stone” manual, the DSM is very much a work in progress. In just the past two decades, the diagnostic criteria for autism have broadened to the point that many attribute these changes as the reason for the stark increase in the prevalence rate of autism: Once thought a rare disorder occurring in, say, 1 in 10,000 children, it is now estimated that 1 in 88 children are autistic.
My son Charlie has always had a diagnosis of autism, plain and simple. He meets the criteria for the new proposed definition of ASD and will not be affected. But a number of my friends’ children have diagnoses Asperger’s or of PDD-NOS (“pervasive developmental disorder not otherwise specified); both of these conditions will be eliminated from the DSM-V. Psychiatry researchers and professionals have sought to assuage parents’ and others’ concerns about the loss of essential educational and other services; according to Kupfer, “maybe 5 percent to 10 percent of patients will no longer meet the criteria for autism.”
The Perspective of One “Proud Aspie”
All of this is a reminder that, even though the DSM is called a “bible” of psychiatry, it has not always existed nor have the specific names or criteria for psychiatric disorders.
While it is very much likely that conditions like autism, depression, ADHD and others have always existed, it is only relatively recent in human history that we have given names to these and sought out treatments and therapies.
Describing himself as “proud Aspie,” Joshua Muggleton writes in the Guardian that, while he was initially against the DSM-V changes,
… after looking at the research I was forced to conclude that actually, the DSM-V is a big step in the right direction. For years, studies have been suggesting that autism and Asperger’s syndrome are the same condition, differentiated only by level of impairment. It’s what I see in everyday life too. My brother, for example, clearly has some form of autism, but could fit both diagnoses equally well. Therefore, it does seem to be a positive move.
As Muggleton notes, “the term Asperger’s syndrome is not going to be lost overnight.” Nonetheless, once “Asperger’s” is removed from the DSM-V, his sense is that it will fade from use. But that is the history of a word: Muggleton emphasizes that he does not think the “camaraderie” he has found from meeting others on the spectrum like himself will fade:
Instead, I feel we are opening up the fraternity of Aspie to our autistic friends. Don’t get me wrong, I will try and get as much use out of my new ["I had Asperger's syndrome before it was cool"] T-shirt as I can. However, when the time comes, I will be able to put the T-shirt away. I will be proud to call myself someone on the autistic spectrum.
What do you think? Do you know someone who will be affected the changes to the DSM-V — or might you yourself be?
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Photo by Andrew Mason