In our house, Dr Sheldon Cooper from the Big Bang Theory is a hero. Oh, we get how he is arrogant, self-centered and insufferable. But we also get how he is vulnerable, how he struggles in a world full of nonsense, but that he also survives. In our house, survival despite vulnerability is heroic. And Sheldon does not just survive: he often triumphs. This is a character who comes close to a breakdown when his regular barber takes a holiday, but he still refuses to compromise: the world has to meet Sheldon on Sheldon’s own terms.
I don’t know if the character of Sheldon Cooper is supposed to have Asperger’s Syndrome, but they could comfortably be discussed in the same sentence. His mannerisms – his little tics, his lack of empathy, his attachment to routine – are greeted with smiles and winks in our house. They remind us fondly of our son, Duncan, who does have a diagnosis of Asperger’s Syndrome. These days Duncan hardly displays any of these mannerisms in public – we rather miss them – but we still sometimes see them at the end of the day, when he is tired. We know that he has his own particular spot on the sofa.
I have felt many different things about Duncan’s diagnosis of Asperger’s. At first it was just relief – here was something that at last seemed to fit, a recognizable pattern in the chaos. But later there was a real sense of loss and despair when I reflected that this was a lifetime sentence. Then I began to learn more and I began to feel more confident, more capable of solving the endless problems. Over time, as we all adjusted, there was some feeling of identity there, and sometimes a sense of pride.
Ironically, just as we began to accept the “badge”, my son grew up and started taking matters into his own hands; and he decided that this label was not for him. He knows other kids at school with a diagnosis of Asperger’s, and he doesn’t want to be associated with them or their label. Those with the label are the ones who struggle at school, who are often withdrawn from classes, or who appear with an adult in constant attendance. To my son, this is not how he sees himself: he sees himself as a survivor. This label – for him – is associated with needing support to survive; and he copes (largely) alone.
As far as my son is concerned, in the ongoing battle between himself and the rest of the world, it is the world that is going to have to compromise.