I read a couple books lately about autism. I come and go on reading autism-related things. Sometimes I'm not in the mood---I need the mental break that reading on completely unconnected subjects brings---but sometimes, it's good to read the perspectives of others that are dealing with the whole bit.
The first book I read about "If I Could Tell You" by Hannah Brown. It was actually a novel, about 4 families with autistic kids. It was set in NYC, in the moneyed high-level career world, which probably biased me against it. I can never understand why the publishing world seems to publish SO many books set in that world, a world most of us just can't relate to one single bit. I guess it might be because that's where the publishing houses are, and when the readers at them read book proposals, they think "Wow, that's so much like my life!" Pretty narrow way to look at things, but I digress. Aside from being annoyed that the people in the book barely blinked at spending sums of money that would keep my whole family supported for years on whatever autism therapy they chose, it wasn't a bad book. The parents all picked different ways to deal with the autism, and reading the book would provide a good introduction to these ways, like ABA, Floortime, medical procedures (a bit quackish ones), more mainstream autism schools and so on. The book seem to feel none of these therapies work well, at least in the eyes of the characters. The only one that seemed to show promise was called the Sapir Method, and is mostly only available in Israel. I didn't get a very clear view of what it consisted of from this book. The book also featured career drama, affairs, family drama---all of which to me seemed a little pasted in to make it a book not JUST about autism. But I'd say it might be worth a read.
The other book was "Seeing Ezra" by Kerry Cohen. It was a more conventional autism memoir by a mother. I liked it mostly. The author gradually came to a conclusion I think I've come to also---nothing really changes autism. It's part of the child, and the best idea is to accept it, love the child with it, and work gradually and gently to make their lives better and easier. I admire Cohen for realizing this pretty early on, and taking Ezra fairly quickly out of situations and therapies that weren't working. Ezra is higher functioning than Janey, but with some challenges she doesn't have, like eating only a very few foods. It made me feel lucky Janey is an omnivore---something pretty unusual for kids with autism. I felt flashes of annoyance at the money issues in this book too. The family always has a nanny or au pair. They ask parents for monetary help and gets all kinds of money for a new school. I realized, though, when thinking about the two books, that the money didn't really make a difference. In some ways, the fact we don't have any money to try anything much with Janey has prevented us from trying things that most likely would not have done much anyway. But I wonder if people publishing these books realize how much it can irk us regular folk out there that they always have a nanny or babysitter or someone else being paid to watch their kids while they live lives outside autism now and then, and many of us certainly don't.
People often tell me I should write a book. I've thought about it, outlined one, and maybe some day I will. But I struggle with a few things to do with that. There are many autism memoirs out there. I would need to feel I could write one with something new to say. I also think about the boys' privacy. Any book would have to include them a lot, to tell an accurate story, and they deserve to not be written about, to have their lives out there for anyone to read. They don't even like to be tagged in Facebook pictures. But maybe, in the future, I'll figure all that out. Until then, I'm glad I have this outlet for my writing.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
3 comments:
Hi! Good autism memoirs are hard to find. I too don't like ones by people who seem to have too much money. But probably if I did too, then I would like them more! Have you read " boy alone" by Karl Greenfeld? It's pretty grim and deals with very severe autism, but it stuck with me for much longer than any of the other ones I read.
I did read that, and it was truly something. I was taken in by the fantasy part in the middle of it, and when I realized what he had done as a writer, I cried for a good hour. But I loved it that he did that. It was exactly what is done to parents every day---they are told they will have a great outcome if they do everything right, and then we see that although his parents did everything they humanly could (and I've read all his father's books---I read them long before Janey), Noah's life was not one to envy. I've read he's in a better housing situation now, which I am very glad of. And you are right---if I had all kinds of money, I am sure I wouldn't be as bothered by those books! But this last bunch did help me see that the money didn't necessarily do much. Your living room set-up for Sophie sounds as good as anything that a billionaire would have!
As a writer, I would offer you this advice: if you are even pondering writing a book, then you definitely have something to say. Books take time, though, so don't rush it. Plan it out until it says exactly what YOU want it to say. And as far as your kids, you could always write under a pseudonym and/or change family members' names, then put a disclaimer to that effect "to protect privacy" at the beginning of the book.
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