First Person: Asperger’s is a label worth keeping
If current plans hold, my 16-year-old son will turn autistic about the time he’s old enough to vote. To my mind — and to his — his newfound autism won’t be a big deal. He’ll still be the same smart, spacey, aggravating person he’s always been, someone who can make a deep philosophical comment while wearing his shirt backward and inside out, someone who can navigate video game universes but get lost in his own neighborhood. His particular brand of off-center goofiness will simply have a new label.
For now, he has Asperger’s syndrome, a condition that he shares with at least tens of thousands of others in this country, and maybe many more. Get them together and you’d have the biggest, most amiable nerdfest in history, comic book conventions included. “Aspies” — as they often proudly call themselves — tend to be smart but awkward, physically and socially. They can burrow into their pet subjects — perhaps dinosaurs or trains or (in my son’s case) Egyptian history, the corporate history of Nintendo and the video game character Mega Man — but they have a tenuous grasp of what other people are feeling or thinking. Sarcasm is often lost on them, forcing me to back away from one of my favorite communication strategies.
Very often misfits at school and work, Aspies also don’t mesh well with classic labels of mental health. The American Psychiatric Assn. is planning to erase the Asperger’s diagnosis in its fifth version of the Diagnostic and Statistical Manual of Mental Disorders, to be released in 2013. From then on, people who used to have Asperger’s will have “autism spectrum disorder,” an already broad term that is about to get much broader. The APA has decided to scrap the label largely because even experts can’t always tell the difference between Asperger’s and high-functioning autism, at least not in a single evaluation.
Funny, I’m no expert, but I can see a sharp difference between Asperger’s and autism in my own house. My other son, an 8-year-old second-grader, is autistic by just about any definition. He truly seems to live in a different world from everyone else, his brother included. He goes through life with a 10-yard stare that almost never makes eye contact. He obsesses about hot air balloons and Rube Goldberg machines but doesn’t know the name of every kid in his class. He speaks with a cadence and tone that seems part robot and part alien, often repeating syllables and phrases as if he had a glitch in his language program. Directing a backyard movie the other day, he told me that a pile of blue and green racquetballs were “the colors of technology — gee gee gee gee.” He seems happy in his head, but I’m not sure I’ll ever really understand the thoughts rolling around in there.
Not every psychiatrist is on board with the APA’s plan to do away with the Asperger’s diagnosis. “I think it’s a mistake,” says Dr. Carl Feinstein, chief of child and adolescent psychiatry at Lucile Packard Children’s Hospital at Stanford University in Palo Alto. “Asperger’s syndrome is a valid entity.” With enough time and the right questions, he believes it really is possible to tell the difference between Asperger’s and autism. Though both groups have trouble connecting with others, he has found that people with Asperger’s can often learn to smooth over many of their social quirks with the right therapy and enough support at home. They also have more capacity to feel lonely and alienated if they don’t get the help they need. Calling them “autistic” misses a big part of their essence and throws up an obstacle for treatment, he says.
Aspies aren’t necessarily happy with the label change, either. Many embrace their diagnosis as part of their identity. Some even look down on “neurotypical” people and their boringly normal brains. Call them autistic and the sense of pride could vanish. My oldest son has told many teachers and classmates over the years about his Asperger’s syndrome. But if he had been diagnosed as autistic, he would have likely kept the news to himself. “You don’t want to tell people that you have autism,” he says. “Asperger’s at least sugarcoats it.”
He takes a thoughtful pause. “Now do you want to talk about Mega Man?”
Woolston is a freelance health, science and travel writer living in Billings, Mont. He can be reached at chris.woolston@hotmail.com.