M y little cousin knows everything there is to know about killer whales. I’m talking everything. Their size, what they eat, where they live, the various species, their typical lifespan, the sounds they make, even the technical term for that fin on their backs. Everything.
He’ll look at me and say, “Ellen, did you know killer whales…?” The ending of that question is always different but it doesn’t matter because I never know. But that doesn’t matter either; he always gives me the answer, loaded up with facts and statistics. He has all this information memorized, ready to be divulged faster than you can say, “Free Willy.”
His ability to learn everything about his obsession du jour, and keep all the information stored in his head, is remarkable. It’s also a symptom of a disorder he was diagnosed with as a toddler: Asperger’s Syndrome.
It’s not the most commonly heard label, but it fits. According to the National Institutes of Health in the U.S., “Aspies” tend to have poor social skills, narrowly focused interests, and repetitive behavioural patterns.
But the syndrome known as Asperger’s, might soon disappear, at least technically.
Psychiatrists revising the Diagnostic and Statistical Manual of Mental Disorders (DSM) for its 2013 re-issue are considering the elimination of Asperger’s as a unique condition, and having it absorbed into the broader diagnosis of “autism spectrum disorders.” The change is for clarity, they say, because the line between Asperger’s syndrome and autism is blurry.
But what happens if this change is made? Will people like my cousin, who have identified with this label for their entire lives, now have to redefine themselves?
By erasing a word that thousands of people use to explain why they do certain things or act a certain way, the new DSM would take away their identity. How would current “Aspies” explain their condition to future employers?
People with Asperger’s have a difficult enough time interacting socially as it is so why should they be forced to awkwardly explain that they used to have one thing, but now its something else?
“We’ll have to make sure we go out of our way to make them feel like nothing was taken away from them,” says Dr.Gillian Graham Bevan, a diagnostic psychiatrist at the Ottawa Children’s Treatment Centre.
But if you take something away and call it something else, how are they not going to feel robbed?
This isn’t just the musing of someone who knows and loves an “Aspie.” Many in the psychiatric field are worried about the potential impact of wiping a whole identity off the medical map.
“It’s moving backwards, not forwards, and I’m concerned about these changes,” says Dr. Kevin Stoddart, clinical director at the Redpath Centre in Toronto, a facility helping those with Asperger’s.
“Individuals with Asperger’s do not want to use the word ‘autism’ because that’s not how they see themselves.”
It’s rash, says Dr. Garth Smith, medical director of the Child Development Centre in Kingston.
“When the DSM is revised there are controversial and often premature changes,” he says. “The people in charge need to exercise due caution before making any hasty decisions in regards to the autism spectrum.”
To be fair, Asperger’s syndrome is already considered to be “high-functioning autism” so the proposed changes are not obscene. However, the word “autism” has unfortunate stigma attached to it. By getting rid of the Asperger’s diagnosis, these changes would only increase the amount of people who have to deal with negative attitudes toward autistic diseases.
That’s not fair to anyone. Those with Asperger’s do not have the same cognitive and language development issues as people with autism and therefore can usually function better.
What about the autistic child whose condition is so far on the other end of the spectrum that they can’t communicate at all? Why should they be grouped together with "Aspies" who just happen to be socially challenged?
These are questions that shouldn’t have to be posed . The word “Asperger’s” shouldn’t disappear from the manual. If it ain’t broke don’t fix it.