Living with Asperger’s Syndrome in a Neurotypical World
Almost all of us are acquainted with someone whom we would identify as a total nerd: the guy who has an umbilical attachment to his computer; the obsessive Trekkie fan; the one who can talk your ear off about the mating habits of fruit bats, the geek who’s so shy he couldn’t get a date if he paid for it. In fact, you probably know more than one. Well, here’s the thing. That person may not necessarily just be a total loser. He or she might be one of the growing numbesr of people who have a neurological wiring issue that is the cause of many, if not all, of their strange social behaviors, up to and including clumsiness and lack of non-verbal communication skills. Right now the numbers stand at about 100 per 10,000 people, but the numbers are increasing at an amazing rate.
In fact, in the next several years or so, many parents are going to discover that their daughter or son (most likely son) has a neurological condition called Asperger’s Syndrome, after the Austrian psychologist who first noticed the behavioral differences in the children he worked with. Asperger had been forced by the Nazis in the 1940s to conduct psychological profiling on youngsters to separate the wheat from the chaff of Aryan society. Those who didn’t make the cut would be dealt with in the usual way the Nazis dealt with anything they considered less that acceptable. Asperger was concerned about his young charges, who exhibited characteristics such as inability to socialize, an unusual fascination with one or two subjects to the exclusion of everything else, and a way of talking that made them sound like “little professors.” He made it his mission to help these children and to demonstrate their value to a society obsessed with a certain kind of “perfection.”
It wasn’t until after Asperger died in 1980 that his diagnostic criteria became known by his name – not until after a British psychiatrist, Lorna Wing, who specialized in autism spectrum disorders, got into Asperger’s work and noticed that he was dealing with a new diagnostic category that didn’t really fit into the autism spectrum.
The reason I know all of this now is because this year, after much heartache and many tears and immense frustration, my son was finally diagnosed as an Aspie (the name they call each other). Many kids who exhibit symptoms on the autism spectrum, from mild to severe, are diagnosed early because their parents sense that there’s something not quite right. It wasn’t that way in my son’s case. He walked and talked early; he was amazingly bright (he surprised me one day when, at the age of four, sitting in his carseat, he explained his take on sarcasm!); he clearly made eye contact when spoken to.
Yet from the day he started school it was clear that something about him was different. He just could not make friends; he got bullied and made fun of on a daily basis. At first I chalked it up to the fact that my school experience was similar; I was the class “brainiac” and got made fun of all the time. I figured that he was just suffering the fate of the smart kid in public school and that it would get better. But it never did. In fact, it got worse, and by the time he was ten he was taking anti-depressants.
Life went on, the way life does, and it just seemed that no matter what he did or where he went to school, he couldn’t make it socially, and it was getting worse. When he went to middle school (for one semester), he would start sobbing the night before and then sob in the morning and often refuse to get out of the car. Again, I just thought that it was the school; bullying wasn’t really handled very well in his school district. It got so bad that I removed him after one semester and homeschooled him. But when even the kids at his homeschool co-op started giving him the cold shoulder, I really started to look at things differently. Someone had asked me if I thought he might have Asperger’s and I had indignantly replied “No!”
I decided to re-think my knee-jerk reaction and started reading everything I could find. Yikes! There he was, in print. Everything I read led me to believe I needed to get him tested.
Then, just for grins, I found a self-test for Aspies online, and I told him about it. I figured he’d blow it off, but one day he handed me a stack of paper with charts and graphs on it, and it was the test. He was clearly on the spectrum. Then I started searching for support. We found a psychologist in our area who specialized in Asperger’s and made an appointment. About five minutes into the session, she had him as a 4-5 on the spectrum and explained that his diagnosis was probably missed because his cognitive level was so high.
So, our journey has begun. He is nearly seventeen, and is still not really happy with what he sees as his new “label,” but I can tell that he is as relieved as I am to finally have a name and explanation for his situation. We’ve met many parents and kids in our support group and are both grateful that we have found a haven.
Moreover, the more I learn, the more I am able to identify the qualities that psychologists call “Asperger symptoms” in my own students. Aspie kids have some great qualities, one of which is a sense of honesty and justice. In fact, I used to wonder why my kid seldom lied to me like other people’s kids seemed to do. Now I know it’s part of his wiring. I used to wonder why he was so clumsy and why he just couldn’t seemed to “get it” socially. Now I know. Now I can work within the framework of his neurology. His dad, sadly, still doesn’t quite accept that Asperger’s is not just the new flavor of the month problem, but we’re hoping he’ll come around.
So, although every nerd does not have Asperger’s Syndrome, the next time your computer nerd buddy is boring you with endless details about World of Warcraft or the finer points of bird-watching, think about this. He’s not trying to drive you insane; he might just be an Aspie. Be kind.