I spend a huge portion of my parenting life explaining Henry’s quirks to people. It can be hard for someone who doesn’t know him to understand why he acts the way he does – why he only eats 10 things, why he won’t sleep over at anyone else’s house, why he can’t watch television in our living room. The easy answer is always because he has Aspergers, but that’s not necessarily helpful; while people are familiar with the label, they often don’t have any real idea what it means.
Aspergers is a syndrome; it is a collection of behaviors which, taken together, comprise a specific profile. Unlike cancer or diabetes or any number of other illnesses, Aspergers cannot be diagnosed with a blood test or a brain scan, even though it is clearly a set of neurological issues. There are a variety of theories about how exactly the brains of people with Aspergers are different from the brains of neurotypical (or “normal”) people but there is no real answer to why some people exhibit these clusters of behaviors and others do not.
People with Aspergers tend to share certain characteristics: They have poor social skills and limited interests. They have higher-than-average IQs. They are rigid and inflexible. Some Aspies talk in a flat monotone; others flap their hands or hop up and down. Some hyper focus on one thing for their entire lives — air plane engines or maps or butterflies.
Because of their poor social skills and limited interests, Aspies have a hard time connecting with people. But there’s more to it than just being awkward and obsessed with a specific thing; Aspies lack the ability to empathize. They are unable to put themselves in another person’s shoes or see the world from a different perspective. This isn’t to say that Aspies are self-centered or that they lack engagement with the world. A person with Aspergers can be taught to think about how other people feel — it just doesn’t come naturally. When I tell Henry that I love him, his response is almost always, “I know.” He rarely thinks to say, “I love you, too,” and when he does, it is clearly an afterthought.
Aspies often have no physical sense of themselves in the world. Henry’s spacial perception is terrible; he will crash over furniture and people to get to wherever he is headed, with no regard for anything in his way. He hugs too hard and talks too loud and flings himself through the world without regard for life or limb. He is constantly running into door frames and furniture and is always annoyed when this happens, as though that door or sofa is new to our house and has never been in that particular spot before.
Aspies often don’t make eye contact. This could be due their poor social skills and lack of empathy — they don’t get why looking another person in the eye is a sign of attention and respect. But another explanation is that Aspies engage by listening, and you do that with your ears, not your eyes. When Henry was little, he would look away when we talked to him; eventually, we realized that he was turning his ear toward us, in order to really hear what we were saying. It made sense, when we thought about it. But it was still disconcerting.
For Henry, though, the most salient characteristic of his Aspergers is his inability to interact with people on any terms except his own. This means a lot of things: It means that he does not like new places, like unfamiliar restaurants or movie theaters. It means that he has to control the conversation, even if we’re talking about something he doesn’t really understand or enjoy. It means that the easiest way to spend quality time with him is hanging out in our game room watching one of his favorite TV shows or playing one of his video games.
It can be hard to understand kids with Aspergers, and even harder to get to know them; their world is so disconnected from ours, and it takes a real effort to get into their space. I am still surprised, after all these years, how much time I spend explaining my kid to other people — teachers, coaches, grandparents, friends. In the end, though, I am thankful that they’re all listening and looking past Henry’s quirks to see what’s inside.