Archive for Nov, 2014

Asperger’s Syndrome: It’s Not “Cool”—It Just “Is”.

Asperger’s Syndrome: It’s Not “Cool”—It Just “Is”

Watch network TV for 30 minutes in fall 2014, and chances are, you’ll see a show with an “Aspie” character. Some writers actually have their characters formally diagnosed with Asperger’s Syndrome (AS), but more often than not, they’re content with just having the person show “tendencies” of the disorder. People put all kinds of spins on AS—from using it to “celebrate not being neurotypical,” like that’s some sort of shiny toy, to excusing rude behaviors. Unacceptable! Among the best articles detailing this entertainment phenomenon is one that appeared here in the New York Times online:

First of all, you don’t know if you have Asperger’s Syndrome unless a trained medical professional, such as a psychiatrist, has made a formal diagnosis. Anybody can be an asshole or have weird habits. Just because you are an introvert doesn’t mean you have AS. Second, AS is now lumped in with a range of conditions across Autism Spectrum Disorder [299.00(F84)] in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Some people may have a formal diagnosis in the Autism Spectrum Disorder (ASD) and little outward sign of it. For others, ASD affects every moment of their life to the point they will need daily assistance with a range of activities, including eating and speaking.

We have a teenager who has a formal diagnosis of Asperger’s. Yes, it came from a bona fide medical doctor who did a residency in pediatrics and psychiatry. There’s a comorbidity (fancy talk for an accompanying condition) of attention deficit hyper-active disorder as well. Our teen takes medication to help focus on schoolwork and other activities. Having had the diagnosis and quality treatment for seven years, which includes cognitive behavior tools in addition to medication, has made a huge difference in our family life. The teen, given that many of them are secretive, surly creatures, is fun most of the time (not all the time). He loves travel and can navigate his way around a big city as well as a rural back road. Yes, he’s quite smart and is working ahead of his peers in a couple of subjects. He’s also tender-hearted when it comes to animals and his family, even if he doesn’t always know how to show it.

Case in point: I dutifully got a flu shot and had known, typical side effects—mild fever, bone aches, and a raging headache. He wasn’t sure what to do to help, so when I asked him to find out about how long the side effects might last, he visited the CDC website and made the following pronouncement: “You’re having a robust immune reaction. Your T-cells and B-cells and natural killer cells are helping produce antibodies, and that’s why you have a fever. You do not have Guillain-Barre syndrome, in my opinion.” I think he said something else about a sort of mystical cell that was related to the Enigma machine, but it got lost in my delirium (Natural killer cells? Isn’t that a Woody Harrelson movie?) Fifteen minutes later, he presented me with a bowl of ramen noodles (something I secretly love but avoid due to the calories and sodium) and gave me a hug. Now, that’s some serious affection from this kid.

Yet for every sweet moment like this, there’s a pile of awkwardness. Forget team sports—although he’s quite competitive at board games. Out in the community, sometimes people talk about him right where I can hear them (so can he), especially people who are older and who have “traditional” views on parenting. “I can’t talk to [that kid]. He’s odd.” Or they keep prodding him to interact with them by asking rapid-fire questions, shaking their heads or interrupting when he doesn’t respond quickly enough. He’s honestly trying, and if he gets something out, it’s usually polite. But to fill the awkward silence, the people often answer their own questions. The teenager is utterly perplexed. (To be fair, I find small talk tedious myself).

Dating issues haven’t gone so well, either. After writing an email to ask her mom’s consent, he finally got the gumption to call a girl he met at camp and liked. He suggested they use their iPads and Face Time—except that she forgot to ask her dad’s permission to use his iPad. Dad comes onto the scene and yells at his daughter, who hangs up in embarrassment. My teen is left confused and hasn’t mentioned trying to call her back. We reassure him he’d done nothing wrong, and that perhaps he could email her, but he’s now gun-shy. Thanks, Super-Strict Dad—I know you are nervous about your daughter talking to a boy, but let me assure you, my son has no bad intentions with a damn phone call from 40 miles away.

One late Friday night, after watching the show Scorpion, which tries to make being super smart yet socially awkward seem like a hoot with perks (it’s totally not), he asked me, “Why am I different?” I took it literally and responded with the usual platitudes of we don’t know, we don’t have an explanation for what causes ASD, but it’s probably some unknown combination of genetic pre-disposition and environmental factors, blah blah blah.

“No,” he said. “Why do I see and feel the world differently? Why do I think in multiple dimensions at the same time? Why can’t I turn off the rational part of my brain and just accept the abstract?” Whoa. That was heavy for 11:30 PM, after I’d had a full week at the office. Why was his dad in bed already when this metaphysical discussion arose?

“I still don’t know the answer,” I replied slowly, “because although I’m a visual thinker like you, it’s not hard for me think abstractly. Part of it is age, education, and experience.” I paused. “But the bottom line is that I think you can use that type of thinking to your advantage, if you work hard at it, and do extraordinary things. It’s not going to be easy because the people who run the country, the corporations, and the education system don’t think like you. They’re going to put up barriers, like the stupid, badly written standardized tests you have to take at school. But hang in there. College is coming, and there, your ways of thinking will eventually be a boon.” That seemed satisfactory to him, particularly since he’s decided to emulate the Flash/Barry Allen as a role model. (We told him that Sheldon Cooper, Magneto, and Gollum were absolutely off the table).

Take this blog post for what it is: one family’s experience with having a teen on the autism spectrum. We strongly believe that Asperger’s Syndrome does not need to be the new “in” thing. So, let’s not make it the characteristic by which we largely identify people’s “hipness factor.” Would you tell someone, “Oh, you have epilepsy! That’s really awesome! I’ve always wanted a friend with epilepsy.” Or, “You’re bisexual—that’s so cool! I wonder if I’m bisexual, too? It seems like the ‘in’ thing to be right now.” Crap like that would make a lot of people beat you up, deservedly.

The bottom line: Asperger’s Syndrome isn’t “cool” or “trendy”…but neither is it “uncool” or somehow “wrong” to have it. It’s just a state of being. Don’t single out people with AS, either positively or negatively. Don’t try to tell parents of these kids how to “fix” them. Just let it be—and let them be. It’s all good…67.831% of the time.