Once in a while, someone suggests to me that I write a book about Janey. It's a flattering thing to hear, and I have considered it now and then. The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories. In thinking about this today, I came up with these four types of autism books....
1. "How I Cured My Child's Autism" This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely. Happily Ever After. The books starts with a few chapters of the horror of the early years, the shock of the diagnosis. Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.
This is not going to happen to Janey. I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles. It's not going to happen. Janey will be autistic for good. There isn't a cure out there that will fix her. I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis. Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.
2. "How The Cruel System Failed My Child" Not as common a category, but I've read a few. This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child. I can't write this book, because that's not my experience. I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey. They want to help her as much as I do. I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care. I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are. But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.
3. "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism" This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things. I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story. I don't know what caused Janey's autism. I don't think it was any one thing. I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet. But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic. I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now. So that book is out.
4. "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life" This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child. The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem. Well, I can't write this one at all. I don't think anyone who spend much time with Janey could. Life with Janey is not poetic. It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes. It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again. There are wonderful moments with Janey, yes. I love her beyond words, yes. But it's doing a disservice to pretend her life is somehow a life we all should strive to live. It's doing her a disservice most of all.
The book about Janey, the one I will probably never write, is full of uncertainties. It's full of working for years for her to be able to write a J. It's full of devoted people that non-the-less often become discouraged by the reality of Janey. It has no shortage of theories about her autism, but no answers. It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about. It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life. It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.