Karl Taro Greenfeld on Writing About His Brother

I still need to read Boy Alone: A Brother's Memoir by writer Karl Taro Greenfeld, about growing up with his severely autistic brother Noah in the 1970s and, indeed, growing up very much in the shadow of Noah.

People might think things were just the opposite, with Karl, not being disabled, being the sibling who was more dominant. But, as he writes in the June 8th blog of the Autism Science Foundation, Noah and his needs determined where the family lived and, indeed, their whole lives. Karl's and Noah's father, Josh Greenfeld, also wrote about the family in books like A Child Called Noah, books that, as that title suggests, were centered around Noah.

My son Charlie is an only child so Karl Greenfeld's is a perspective that Jim and I have not had to consider as far as our daily lives. Charlie has always had our undivided attention and he indeed seems to have needed it (still does). Certainly, he still requires the 24/7 supervision of at least one of us. How would a younger child have felt to be constantly dragged to doctor's or speech therapist's waiting rooms?

In considering why it took him so long to write a memoir about his brother and, too, about a difficult (and quite public) childhood, Karl Greenfeld notes how the experience of having his own children (two daughters) has shown him what he missed growing up as the only sibling of a "child like Noah." Greenfeld even notes that he wondered if, had he "vanished from the earth at some point during our childhood," would Noah have noticed? Maybe, but he would not have been "saddened," Karl Greenfeld suspects. His aren't sugar-coated feelings; he notes that he has received

.....letters and notes from parents—almost always parents, by the way, rarely siblings—who lecture me for not recognizing the gift that Noah has given me. He is a blessing of some kind, these folks insinuate, and I have stubbornly refused to accept it. I looked for that gift in my own life and see the sacrifices my family made: My parents moved us across country to a better program at UCLA. They opened their own day care center for the developmentally disabled. Our home, as the parents of low functioning autistics can probably envision, was a jumbled-up mess. We were not a happy family.

One can only speculate how Karl Greenfeld's, and his family's, experience might have been different had Noah been born (as my son was) in the late 1990s. Many more siblings of individuals on the autism spectrum have made movies, written books, shared their stories; individuals on the spectrum have also talked about how they felt about their non-autistic siblings. There are programs like Sibshop that are meant to provide support for siblings too and there is certainly much more public discussion about autism and life with disabilities.

But I know, a sibling of Charlie's would not have found it easy to be told, ok, tomorrow we are moving into two rooms in your grandparents' basement so Charlie can go to school in their town's school district. Of course we would have done everything we could so that a hypothetical sibling would not feel, well, like an afterthought and a permanent second fiddle. And often Jim and I sense a loneliness about Charlie not because he's on the autism spectrum, but because he's an only child.

What if, what if, what if?

And yes I know, I've done a couple of posts about the book. Based on Karl Taro Greenfeld's other writings and the place that his father's books hold in the history of parent memoirs about autistic children, Boy Alone: A Brother's Memoir isn't one to miss. Off to read it.