I am not sure why I picked up Boy Alone, by Karl Taro Greenfeld, when I was at the library the other day. I usually like to read books about autism, but I tend to shy away from the ones that are not written either for or by people with autism, but rather about them. This book is written by the older brother of a person with autism. Maybe because the library in my small town has a limited selection, and maybe because I was there with my uncle and didn't want to keep him waiting while I browsed for ten million hours, I just grabbed it.
When I first started reading it, I felt angry. I had plans to write a negative review in this blog. My first impression was that Greenfeld had a lot of pent-up anger at his brother, and that the book was mostly about how awful it was to live with a sibling with autism. But even now, as I flip back through the book, I can't seem to find any specific pages or paragraphs that made me feel that way. There is some offensive language, such as "retard," "idiot," "freak," and "mongoloid." But Karl uses them in context with how they were used at the time. He and his brother Noah grew up in the 60's and 70's, when, although professionals were starting to learn about autism and other special needs, society as a whole was still pretty ignorant.
As I read on, I found myself feeling empathy, instead of anger, for Karl. He got a raw deal in childhood, not necessarily because he had a sibling with autism, but because of the situation and the times that they were living in. The popular theory about autism at the time was that it was caused by cold and unloving parents, particularly "refrigerator mothers." In order for Noah to be accepted into a preschool, his parents were required to go into therapy, where they were told that they had caused Noah's autism by not wanting him or loving him enough. The parents reassured themselves that this couldn't be true, because their older child, Karl, was "normal."
In fact, through out the book, Karl talks about his parents mentioning that he is unremarkable, typical, and average. I got the impression that Karl was somewhat invisible as a child. Their parents poured all of their time, energy and resources into trying to care for Noah. And when Karl had difficulty in school, they turned their anger and disappointment on him, because they couldn't do so on Noah. Karl seemed to float around his family, being called upon to help care for Noah and sometimes to help make decisions about Noah, but not really recognized or appreciated as an individual child.
Although Karl reports feeling somewhat jealous of Noah for taking up so much of their parents' time, and although he felt disappointed at not really being able to have the type of relationship his friends had with their siblings, he seems to love Noah fiercely. On one hand, he does not like being known as the brother of a "retard," at a time when he wants to blend in at school. But when the prospect of Noah being sent to a group home or "put away" in an institution is brought up, it is Karl who begs and fights for his younger brother to remain in their home.
I started to realize that the anger I had detected, when I first started reading, was not at Noah for being autistic, but at society for how Noah and the rest of his family was treated. There was no "early intervention" to try to reach Noah at an early age. There were no laws at the time requiring schools to educate children with special needs in the least restrictive environment, or even really to educate them at all. Being beaten, starved, and even electroshocked were some of the "treatments" that professionals used to try to "help" Noah. And as Noah grew up, there were nothing but institutions and less-than-mediocre group homes to help him transition to adulthood. Karl grew up watching the fear and pain his parents live with, while getting very little support for himself at all.
The title, "Boy Alone," is meant to represent Noah, as a child with autism who often preferred to be alone and seemed to be alone in his own world. But to me, the real "Boy Alone" was Karl, so often left alone by his parents and the rest of the world.
I don't know if you would want to read this book. I have read other reviews on the book, mostly by parents of children with autism, and many said that it was really painful to read. Others said it was wonderful, and even called it a "must-read" for parents with children with autism and their siblings. I think it is a good book to read, first of all to learn some important history about how people thought of autism up until recently... and also, just to read Karl's story.
So... read at your own risk, I guess. If you've read this (or if you do in the future) let me know what you think!