Journalist Karl Taro Greenfeld has lived in the shadow of autism his whole life. He does not suffer from the disease, but his only brother, Noah, is severely autistic, a fact of life that has penetrated every aspect of the Greenfeld family.
In his new memoir Boy Alone, Greenfeld recounts his experiences growing up in the shadow of his brother's condition. As he tells Michele Norris, "when you have a developmentally disabled person in your family ... the gravity of the family is tilted disproportionately toward that person. In my family, Noah became the center of everything."
In the 1970s, Greenfeld's father, Joshua, wrote a series of groundbreaking best-sellers about Noah's struggles. After that, Noah became a national celebrity. Magazine covers and television features followed, and the impact of his brother's health seemed to take over the family.
"Almost as soon as I have a memory of myself, the memory is of worrying about Noah," Greenfeld says. "I was very much the less important sibling. I don't look back on that with any kind of self-pity; it just was the reality of the situation."
Greenfeld estimates that 80 percent of family conversations were about his brother, with the remaining 20 percent left for the typical topics of any other family. Early on, the worry centered on Noah's development — why he wasn't speaking or developing like other children. Later, the dilemma shifted to how the family would care for him.
Greenfeld writes with a mixture of empathy for and anger toward his spitting, hair-pulling brother. He notes that Noah was very beautiful, but that he seemed to use his charm to seduce his parents and caregivers. More than once, Greenfeld uses the word "idiot" to describe his brother.
"It's not very politically correct," Greenfeld says. "It's what society used to call people like Noah, and I think I use it in that more classical sense of the word."
While he acknowledges that growing up with his brother taught him a certain amount of compassion and selflessness, Greenfeld notes that these lessons were forced upon him — not taken up by choice.
"If you're hit by a car, you learn to be afraid of cars," he says. "It's hard for me to say, 'I'm learning so much from this and that makes it OK,' because I look at Noah and it's not OK."
As his parents age, Greenfeld is coming to terms with what his responsibilities are for his brother's long-term care. He notes that this is a situation that many families face.
"There are a lot of adult autistics out there in the world," he says. "I don't think we're ready for them as a society, and I don't think we've really begun to focus our attention to what this is going to mean in terms of long-term care and lifestyle issues."