“Who is the boy alone?”, I ask my 24 undergraduates who have completed reading this book about growing up with a brother with “classical” autism, for a course on autism spectrum disorders. Obviously, one student says, the boy alone is the boy with autism. No, says another, the typical brother is really the boy alone. Thus begins a riveting class discussion on this book, which almost seemed too sad for 18 and 19 year olds to read. The week before students had stopped me in the hallways, with tears in their eyes, which caused tears in my eyes, telling me the book “was too rough to read,” “too unrelenting,” and “too devoid of hope.”
I have known the author, Karl Greenfeld, for a long time. When I was a graduate student, I was reading all about him in three books written by his father: A Child Called Noah (1972), A Place for Noah (1978), and A Client Called Noah (1987). These three books chronicled the family life of Noah, who was labeled with autism; his dad, Josh; his mother, Foumi; and his older (by 2 years) brother, Karl. These books were remarkable to me because they detailed a father's perspective on raising a child with a disability by using a daily journaling style. Now, Karl Greenfeld has written a memoir about growing up with Noah, and it is very powerful.
Boy Alone is written from the brother's perspective and takes us through his early memories of Noah's autism (a student asks the class, “When did you first know about autism, when did you first meet someone with autism,” and we share our earliest memories). Here, Karl recollects being 5 years old:
I don't consciously worry about Noah. He is a fact of my life, as much a part of my life as our house or my parents or our blue Oldsmobile…Vaguely there is a sense that something is wrong, that something in the center, that something in the heart, is not as it should be…it is always there, like an arrhythmic baseline underneath an otherwise happy melody. (p. 7)
Greenfeld recalls his father spending hours in the library reading books on autism. Greenfeld summarizes many of the books and his parents' response to them in the 1960s and early 1970s: Rimland (1964), to Bettleheim (1967), to Park (1967). Greenfeld calls this the “Era of Despair,” before the Education of the Handicapped Act of 1975 and before the Individuals with Disabilities Education Act of 1990. Families did not really know what autism was and did not know where to get services, and there was no Internet for research. After his father reads about Ivar Lovaas' work in 1965, the family decides to seek help from Lovaas' laboratory at the University of California, Los Angeles (UCLA), and they suddenly move to Westwood, California.
When Noah was school age, the notion that the school system might pay for intensive therapy or that he could be supported in a mainstream school was still decades away. Almost every service Noah received during those early years was paid for by my family, which was surviving on a freelance writer's modest income. The cost of switching coasts is just one of a dozen, including expensive multivitamins, chiropractors, speech therapists, and the tee shirts that Noah chews up steadily. And then there are all the hidden costs: my father can't really travel for magazine assignments because it is too hard for my mother to care for Noah herself for extended periods. (p. 79)
Greenfeld describes the family's journey to seek help from Dr. Lovaas at UCLA and their difficulty in understanding pivotal response training and other methodologies of behaviorists. Greenfeld takes the reader through the various schools, treatments, and institutions Noah attended, the health issues of his parents, and his own troubled adolescence and young adult years. It ends when the brothers are in their 40s, one a successful married writer with two daughters, living in New York City, the other an isolated, nonverbal graying man living in a poorly funded group home in Los Angeles.
What happened to Noah? At age 40, Noah still struggles to speak and has no formal communication system but for a few words, poorly articulated. He is still prone to instances of self-abusive behavior, spitting at strangers, toileting accidents, and several self-stimulatory activities. His strengths (as articulated by my students) include showing affection toward his family, feeding himself, and having strong food preferences, especially for his mother's rice balls. He cannot live alone and needs 24-hr supervision.
Greenfeld writes about Noah in stark, honest language. In between chapters, he inserts clinical assessments of Noah's cognitive and functional levels—the professional coldness is difficult to read. Greenfeld describes his jealousy of Noah, the pressure put on him to be the successful child, the feeling of loneliness created by a lack of time and attention from his parents, and the challenge of having a Jewish father, a Japanese mother, and a brother with autism. He discusses his social difficulties in making friends in adolescence, his use of marijuana in his teen years when he frequently babysat Noah, and his inability to perform well as a high school and college student.
Boy Alone also includes much information about autism; the history of treatments; the controversial group, Cure Autism Now; and the national lack of support for adults with intensive developmental disabilities. With his honest and brutal writing style, Greenfeld feels the current emphasis is all about the cure and not the care. His comment on the current state of services for adults with autism is numbing but real. He uses an effective writing device to help us imagine Noah as a successful man with an autism spectrum disorder, what his life might look like, who Noah's friends might be, and what the relationship between brothers might be. Yet, when we realize it is not really part of the story, it feels like a terrible punch in the stomach or a stab to the heart.
In my course, I have attempted to present autism from a disability studies perspective, more of a difference than a disability. We celebrate Temple Grandin's (2006) and Sue Rubin's (Wurzburg, 2004) accomplishments. We read the Curious Incident of the Dog in the Nighttime (Haddon, 2003) and use Kluth's (2003) You're Going to Love this Kid as our textbook. The students learn many techniques and instructional strategies for teaching students with autism spectrum disorders and complete lengthy research papers on various treatments and issues. We are a class of autism spectrum disorders optimists. Then we read Boy Alone, and we have a collective crash. Therefore, I can neither recommend nor criticize the book, I just know it made our class very sad.