A relative asked me today if books helped me deal with my son's diagnosis. My own reaction surprised me somewhat, and I've been thinking about it ever since.
The truth is, reading has helped me in ways for which I'll be forever grateful, but books I bought about autism, especially when I sought answers in my early grief after my son's diagnosis, might have caused me more harm than good. Wow. Maybe this is a "no duh" to some of you, but just saying this shocks me; it's a new take on my own learning, my own self knowledge. I, like some friends I know, have lately had an urge to take most of my parenting books, autism books, special needs books, and trash them. Not all. (Some, like This Lovely Life, are treasures.) But most.
Now, books might not be to blame, really; I confess I probably had some impossible expectations. I think I was searching for a book that was like a travel guide to my own life, a manual for my very own family, and that is a book I realize now that only I could write. But some books, I fear, might have exploited my (and your?) vulnerabilities. Some books I think tried to pretend they could really be that Fodor's for my Autism Travels. And they lead me in many wrong directions, costing me time and grief, and I resent those books. On a tougher day I resent them almost (but not quite) enough to make me (gasp) throw books in the garbage.
I don't know how well you'd like it, but rather than read these wanna-be guidebooks that promise me more maps than they can possibly deliver, I know that I would prefer an honest book that starts like this:
This is a book, and a book written in the time of autism - a pivotal time in which autism seems to be exploding, and every day autism presents our children, our country, our world, with rapidly expanding layers of questions.
This is just a book, and it might help you. And it might not. As a book, it's not all knowing, it's not a crystal ball, and it's not going to be all things to all people. Autism is a spectrum, and most books come in black and white. Autism is complex, challenging, and not easily defined. The permutations of issues related to autism are infinite, and, especially given the limiting cost of paper and ink, books are most assuredly finite. Check the index of this book and you will find no rapidly expanding layers of answers. If you love someone with autism, or you care about someone who loves someone with autism, you need many resources, many supports, many layers of networks. You need more than this book.
You need the blogosphere. You need the Internet. And maybe you need this book just a little bit, because this book will tell you how to find more of the things that might give you some of what you need. This is the book that wants you to put it down
as soon as you can, and (after you have spent some good time with your family and maybe taken a hot shower) go to your computer. Because no matter what the authors of this book know about autism, and they know as much as the next family with a member on the spectrum, they do not know what your experience with autism looks like, or how to best support you,
but they know that online it is entirely possible that you can find the community that fits your needs. Even that community will not have all the answers. Even that community will have limitations, and be stymied by some of autism's conundrums.
But, like this book, you will be able to respect that blogging
community if you choose it carefully, and it can be filled with love.
Is that book out there? Did I miss it on Amazon? Or do I (and a you) need to write it?