A Smidge Off Normal
Settling into The Boy’s diagnosis of Asperger’s Syndrome has been like breaking in a new pair of shoes. Stiff and unfamiliar, at times rubbing uncomfortably, leaving a painful blister here and there. Now obviously, The Boy has not changed since the diagnosis. No, his personality, his struggles, his strengths, his weakness, his idiosyncrasies they remain the same. And yet something about the whole experience has brought something to the forefront. Something that always hung around in the periphery of my thoughts. Lurking in the shadows, just out of sight. But it wasn’t really hiding. In all likelihood, I did not want it to step out into the harsh daylight, forcing me to address it. This thing that I am now confronted with is my extreme concern over how others see The Boy.
I have spent the better part of the past nine years being The Boy’s buffer to the outside world. For every odd behavior, I had an explanation. For every social shortcoming, I was ever present – swooping in and smoothing over. For most any situation, I over-planned, over-analyzed, and micro-managed. I came prepared. I avoided. And for many years, my efforts paid off, as only those closest to us had any indication that The Boy was anything but “normal”. It was all-consuming, this attempt at keeping up appearances, and soon it so infiltrated my way of thinking that it simply became matter-of-course. But as The Boy got older, his peculiarities became more conspicuous. Behavior that may have been tolerated in a very young child were seen as odd, annoying, or rude in an older child. The Boy stepped more frequently into situations in which I was not present in to help him navigate. I felt my control slipping away.
The more the control slipped, the more the concern about the thoughts and opinions of others took hold. The looks of exasperation or annoyance, while usually lost on The Boy, were like knives to my heart. And so for a brief moment, this diagnosis brought with it some degree of relief. Now I could show people why The Boy does the things he does and acts the way he acts! The next time I saw that all too familiar look of annoyance on someone’s face, I would be ready. “He has Asperger’s,” I could declare…and the look would be replaced with one of understanding. Obviously, the comfort of these thoughts was fleeting. Of course I could not go around announcing to everyone that The Boy had AS. How insensitive and tactless that would be.
I think one of the trickiest things about Asperger’s Syndrome is that those living their lives on this little section of the autistic spectrum appear to most people to be “normal”. But their idiosyncrasies or way of relating to the world may get them labeled as weird, strange, or annoying. If The Boy’s differences were somehow physical, they would elicit responses of understanding and curiosity…but because his unique way of thinking and interacting with the world is not obvious, the reactions are often quite negative. And that is painful to watch. At times I still resist the urge to blurt out, “He has Asperger’s!” in an attempt to shift the attitude to one more of acceptance than judgment. But I can’t. So now I am confronted with the knowledge that The Boy is going to be seen as “different” or “odd”…at times, even “annoying”…and there is nothing I can say or do to change that. What I can do is adjust my own way of thinking. I need to take hold of the fact that the opinions of others do not define The Boy. It is these very differences that make him who he is. And I love who he is. I need to use that fact to insulate my heart against the pain of having my child be anything less than cherished and accepted in the eyes of others. It is not an easy task, but it is so necessary. How am I to teach The Boy to cope if I cannot cope myself?