When I was writing Boy Alone, trying to understand the emotions, jealousies and rage of having a low-functioning autistic brother and figure out how it had dominated my family dynamic when I was a boy and shaped my adult view of the world, I found myself wondering why this hadn’t been my first book. In this age of memoir as a popular form, why had I waited until I was 42, and my fourth book, to begin writing about the person who had the greatest impact on me? The explanation, I realized, was that until I had children of my own, I didn’t understand how abnormal my own sibling relationship had been. My two daughters, Esmee, 9, and Lola, 7, both developing normally, have shown me, in both simple and profound terms, how much I had missed.
They are playmates, allies, enemies, antagonists, advocates and nemeses, sometimes simultaneously. They form their own little sub-state within the larger state of our family, a not-quite autonomous province, at least not yet autonomous, that has its own intrigue and aspiration. When they lack for friends their own age, they make do with each other. They can find inside the family the company of a peer rather than parent, and their lives, I suspect, are that much richer for having that bond and companionship. My wife, one of four siblings in a close family, intuitively understands these ties; I still find them perplexing.
Noah, in many ways, was a brother by blood only. I suspect, and I have no way of confirming this, that if I had vanished from the earth at some point during our childhood, he would have noticed my absence but I don’t think he would have been saddened. Yet if Noah had disappeared—this was a real worry for me; as he grew older my family constantly discussed and worried over when and where he would be institutionalized—then I would have been crushed. This lack of emotional reciprocity never occurred to me until now, and I’m still not sure if my love for Noah is diminished by this or simply numbed.
Yet I didn’t understand, or verbalize, how distorted our sibling relationship was until I had children of my own. Then I saw that Noah had impacted my view of the world in more ways than I had previously acknowledged. When I have written about autism in the past, I sometimes 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. My father wrote eloquently about us in his own series of books about our family, starting with A Child Called Noah. (Perhaps another reason I didn’t write very much about Noah until now: three books about my brother seemed like enough. Indeed, when I brought a copy of Boy Alone to Noah’s house to give to him, he seemed indifferent; he’s used to being the center of attention.) I wish I could say that Noah’s autism was a gift, but that would be a lie. It was simply a fact of my life that I struggle not to turn away from.
Karl Taro Greenfeld is the author of Boy Alone: A Brother’s Memoir, a wrenching account of growing up with a profoundly autistic younger brother.