Monday, November 11, 2013

The First Book I Ever Saw About Autism

Picture this. Circa 1985. Autism was much more of a mystery than it is today. No one talked about it on the news. I'd never met another person with autism or another person who had a sibling with autism. Heck, I'd never even come across a book about autism. And then, either at the library or a book store, I can't remember which, I saw this:

Inside Out, written by Ann M. Martin of The Babysitters Club fame (c'mon, eighties and nineties girls, you know you read the books), tells the story of an 11-year-old boy with a severely autistic younger brother. The book opens with the big brother feeling utterly exhausted after dealing with his brother's overnight, sleepless antics.

For the longest time, I wouldn't have been able to tell you any more of the plot, because I couldn't bring myself to read the rest of the book. I'm not quite sure why. All I can say is, I found this book when I was about 11 years old. For a moment, I literally had the breath knocked out of me. The feeling was similar to the first time I watched the show Parenthood (in which one of the characters has Asperger's). There was a sense of relief, of validation (oh, so it's okay to be cranky because my brother just dumped a bunch of food out of the refrigerator? You mean, I'm not an evil person?). Again, this was before the days of sibling support groups or Autism Speaks Walks. I thought we were aliens and that no one lived our lives.

But then, it was almost too much. The book hit too close to home, and made me feel things I wasn't ready to feel. So I shoved it back on the shelf and into a back corner of my mind.


Last week after her concussion Anna needed to not only stay home from school, but not read (in addition to no computer or TV), either. Anyone who knows my girl knows how torturous a prescription that is. I told her I'd find time between working (my current part-time) job from home to read to her. Wednesday morning I shot over to the library and attempted to find a stack of books she hadn't read yet...and my eyes fell on Inside Out.

I knew: it was finally time to read it. Together.

And so, over the course of the next couple of days, we would settle down into the couch and delve into this story about the boy just a little older than Anna with a little brother not much like her own. "This is what my brother was like, growing up," I said to her as we started. Anna's not one to talk about feelings, even with prodding, so I could only wonder, for the most part, what she thought. Her experience is so vastly different my own. I doubt she tells people about Ethan because in most cases, especially during brief interactions, he blends in well as just a regular kid. Her brother scored in the 97th percentile on recent kindergarten brother still cannot write his name without help. With her brother we are able to see some of the "cute quirks" of autism (the love of numbers, lights, and alarms; preciseness; the literal mind) while my brother has exhibited the more difficult side, like destructive and sometimes self-injurious behaviors.

I'm not sure what she thought, but I will say this: for those next few days as we were reading the book, Anna seemed extra especially happy to see Ethan home from school. She went out of her way to play and interact with him. And while that could have been because she was really, really bored, I wonder. I wonder if in a little part of her brain, she was feeling thankful: that her own brother could talk, and was potty-trained, and wanted to play.

And I wonder if, as we read those scenes about the big brother trying and trying to engage his little brother, and his frustration when his overtures are ignored, if she was thinking back to the times even now when that does happen, and if she was realizing it's okay. It's okay to be frustrated. Her feelings are worth something.

For the record, the book isn't exactly "PC" when it comes to autism. Some of the (ABA) teaching techniques seem downright antiquated, and demeaning. The word "retarded" is used liberally. The way autism is described seems a bit off; autism seems to exist soley as a condition meant to be eradicated. As I see with Ethan, that's not always the case. There are some truly wonderful things about his form of autism. But that is just our story, right now.

This was 30 years ago. The Judy Blumes and Beverly Clearys of the world were not touching on the subject as I scanned the stacks in the children's section of the library and bookstore. But someone did. And so, wherever you are, Ann M. Martin, thanks. Thanks for writing a book that meant something by just existing. You helped me see I was not alone, and that my feelings mattered -- even if I wasn't ready to face them at the time.

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