Defending a Diagnosis
When I first heard that the Asperger’s syndrome diagnosis was going to be dissolved and absorbed into the autism spectrum disorders, my first thought was that people with the Asperger’s diagnosis were not going to be pleased. As it turns out, I was right. Aspies, a name many with the diagnosis have adopted, have an identity and a community wrapped up in the diagnosis around which many rally in mutual support — a diagnosis that’s been the source of some contention as its legitimacy has been debated and now its existence as a stand-alone disorder is in question. I’m not one for labels, in large part because they tend to be divisive but I firmly believe that we should be able to define ourselves as we see fit and the Aspie community has done just that — or at least they’re trying. In a time when thousands of people are trying to shake off one label or another, Aspies are clinging to theirs. Many diagnosed with Asperger’s fear that their collective identity will suffer a hit, even be lost entirely if they are to be lumped in with the Autism spectrum.
From Lindsey Tanner for the Associated Press:
Some parents say they’d welcome the change, thinking it would eliminate confusion over autism’s variations and perhaps lead to better educational services for affected kids.
But opponents — mostly older teens and adults with Asperger’s — disagree.
Liane Holliday Willey, a Michigan author and self-described Aspie whose daughter also has Asperger’s, fears Asperger’s kids will be stigmatized by the autism label — or will go undiagnosed and get no services at all.
Grouping Aspies with people “who have language delays, need more self-care and have lower IQs, how in the world are we going to rise to what we can do?” Willey said.
With any diagnosis comes assumptions preconceptions and often stigma. You are one of these, therefore I can expect this of you and these are your limitations. That’s the power of labels and that’s why some people are fighting so hard for some measure of control over the labels attached to them. While incorporating the Asperger’s diagnosis into the autism spectrum may have some benefits that are not currently available to those with an Asperger’s label, many disagree on how to amend the situation. Do we change the label or the distribution of services? And what, if anything, is a reasonable trade-off?
Rebecca Rubinstein, 23, a graduate student from Massapequa, N.Y., says she “vehemently” opposes the proposal and will think of herself as someone with Asperger’s no matter what.
Autism and Asperger’s “mean such different things,” she said.
Yes and no.
Both are classified as neurodevelopmental disorders. Autism has long been considered a disorder that can range from mild to severe. Asperger’s symptoms can vary, but the condition is generally thought of as a mild form and since 1994 has had a separate category in psychiatrists’ diagnostic manual. Both autism and Asperger’s involve poor social skills, repetitive behavior or interests, and problems communicating. But unlike classic autism, Asperger’s does not typically involve delays in mental development or speech.
Aperger’s revolves heavily around social differences and many who embrace the label embrace those differences not as subnormal or abnormal but as very natural and normal leanings and behaviors viewed unfavorably “neurotypicals” (those outside of the autism/Asperger’s umbrella). While some connections may be made based on the many parallels between the two diagnoses, many Aspies fear the distinction in developmental abilities will be lost in the blur created by blending the labels. The change in diagnosis may prove to be a double edged sword in some ways. We tend to see developmental delays (as with autism) as being objective, legitimate and neurologically based while the traits of Asperger’s are primarily behavioral and lend themselves to a more hazy and subjective reading. For many, there is a struggle to link Asperger’s to autism as an established diagnosis while maintaining its distinction as not meaning limited or delayed developmentally. Still for others, especially parents seeking useful services and placement in schools, the question of perception has to be weighed against very real needs which currently hinge on the little numbered code that accompanies every diagnosis in the DSM.
As I’ve said, I’m not one for labels applied by people other than the wearer and I’m inclined to think the whole situation might be better handled if we throw the book out altogether. If the DSM and it’s hairsplitting, mind measuring scales and labels didn’t exist, what choice would we have but to see people as individuals and not as representatives of their limitations — real or perceived? No one should need to take on a label to get the help they need, least of all children in schools and no one should need to cling to a diagnosis because a collective identity rests in it. Autistic people, Aspies, neurotypicals and beyond, we are who we are despite labels, not because of them.
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You may also be interested in:
Psychology Today: What does this change mean? Don’t people have the symptoms of Asperger’s syndrome any more? Of course that’s not the case. But let’s look at mental health problems as they are reflected in years of DSM editions…
NPR: Right now, the diagnosis often hinges on a person’s language skills. But that’s pretty subjective and can change as a child grows up, researchers say. “The categories are just not used by clinicians in a reliable fashion,” Lord says. A single category for autism spectrum disorder will let clinicians stop agonizing over which diagnostic category to put someone in…
The image at the top is a still from Adam Elliot’s brilliant film, Mary and Max, featuring the voices of Philip Seymour Hoffman and Toni Collette. Go watch it.