I've noticed that most accounts of Autistic people, whether written by parents or professionals, go no further than maturity. Great emphasis is usually placed on the early years, ie problems with school, social interactions, care facilities or the lack of same . I don't intend to add to what is already a respectable body of material, only to wonder about what is not even, properly speaking, the elephant in the room: what happens when autistic adults get old?
I recently caught a Radio 4 broadcast where the average life expectancy of Autists was given as 59 years. Two factors were cited- the incidence of epilepsy, common in Autistic adults at the less able end of the spectrum, and suicide. The announcer admitted that no research had been done to explain these bare statistics.
If you've been following my other writings about my son, you'll know that I try to understand his thought processes. That is not to say I always succeed, and in any case, what I come up with is at best an informed guess. He simply does not have the emotional vocabulary we take for granted to tell me how he feels. Here's an analogy: imagine that you are living in the 50's, before anyone really knew about the bad effects of smoking. Smoking is normal. Nearly all adults and most teenagers smoke. People smoke in restaurants, in bars, on buses, in their homes, in University classrooms. Now imagine you are a non-smoker. You find smoking annoying, distasteful, and offensive. Imagine further: you are the only non-smoker on the planet, as far as you know. How would that affect your relations with your fellow human beings?
But this is a false analogy, you say. There are many people with Autism, some probably within reach, What about classmates at his special school? This is difficult to explain.People who are neurologically normal, non-Autistic, are social animals. They function best in the context of others like themselves. They tend to view anyone who functions differently as a loner, a weirdo, a recluse- all terms of opprobrium. Autists, by contrast, function best within themselves; they are, actually, their own context.
We've made a lot of mistakes, as parents.You do when you are raising someone even stranger than yourself. We also learned a great deal, which is what happens inevitably when you keep an open mind. In the end, we decided to try to let our son grow up as he wished, offering him every opportunity we could manage to do so. For example, he watched the same videos endlessly, over and over, and when they wore out we bought him replacements. What did they all have in common, we wondered? Most, like 'Beauty and the Beast' and 'King Kong', involved monsters excluded from society who in the end found love. Others, like ' The Blob' or 'Jungle Book' featured misunderstood young people solving problems, winning battles.
It was the Autist Temple Grandin who coined the phrase, 'An Anthropologist on Mars' to describe how she felt in social situation. That was my son all over. Gradually we began to understand that it was not mindless repetition , that in returning to the same video, often for just one scene which he would play over and over, he was trying patiently, relentlessly, to understand.
As I write this my son has entered a new phase. Though the weather is still far from warm, he has taken to spending hours from morning to evening, standing in his back garden, watching the sheep as they mill about him begging for treats, the horses happily frolicking in their new paddock, or simply gazing off across the pasture to the distant hills. The Television sits silent and dark for the most part, yet my son seems content and even happy. If we wave to him he waves back, and he is friendly and co-operative with his Befrienders.
So when I hear the high incidence of suicide among older Autists, and I realize that neither myself nor my wife will always be here to watch over him, I fear for the future of my son. I can only hope like any parent that somehow, in the unreachable fastness of his consciousness, he has found a reason to live.
For further write ups about my son, see Growing up with Autism Growing up with Autism 2 An American Story A Trip to the Dentist Movie Night