September 12, 2009
Memoir drags autism's hidden pains into view
By David Royko
Special to Tribune Newspapers
"Boy Alone: A Brother's Memoir"
Karl Taro Greenfeld
Harper, 357 pages, $25.99
Karl Taro Greenfeld is part of a celebrity family, or one that was. His brother Noah, younger by a year and seven months, was among the earliest autism media stars, with a series of books written by his dad, Josh, and profiles by, among others, Dan Rather and "60 Minutes" in 1978, when Noah was 12.
To describe what makes "Boy Alone" -- Greenfeld's memoir about life with autism -- extraordinary means divulging "plot twists," so consider this a spoiler alert.
Greenfeld's family was first grappling with Noah's severe autism when it -- the word itself, let alone its hallmarks -- was still unknown to most. Since then, autism awareness has exploded. Even only a dozen years ago, one had to explain to most people what it was: "No, he's not 'artistic.' Autism is a neurological disorder defined by developmental delay, impaired social interaction and communication, restricted, repetitive behavior ..."
That it should be necessary to describe Noah as “severely” autistic points to autism having moved from being primarily a severe disorder to a condition that now encompasses Asperger’s Syndrome, a recently-defined autism diagnostic category that is typically high-functioning, often accompanied by lofty IQ scores. Asperger’s adds social and political wrinkles to the Autism discussion. Some “Aspies” don’t consider what they have to even be a disorder, only a difference--between themselves and the neuro-typical population. It begs the question as to whether the entire range of this spectrum disorder should be considered autism.
Even before Asperger’s was defined in the 1990s, Karl was dealing with such distinctions:
"I occasionally read other books about the developmentally disabled. There was the best-selling A Circle of Children and also the memoir The Siege; in each of them, the beginning was familiar--the struggle to break through to the seemingly closed-off child--yet by the middle of each book I am jealous. These kids are talking, are learning, are somehow becoming part of the family. They are drawing wonderful pictures, playing music. Noah is still shitting in his pants. He seems to excel only at autism, at being hard to reach, at being distant and psychotic. Why of all the gifts does he have that instead of, say, being able to replay a Mozart sonata after just one listen?"
They are familiar feelings for the typical loved one of a typical autistic kid reading a typical book about an autistic person--where is our happy ending?
For many families dealing with autism, there is no happy ending. The finale is as tragic as a Steinbeck novel or a Puccini opera, but without the literary bent or the music.
In the final third of Boy Alone, we seem to confront another of these happy endings. Noah, in young adulthood, has responded to treatment, is becoming verbal, and has even reunited with a childhood friend (or maybe better described as an acquaintance) from one of his special needs programs. As this chapter ends, Noah and Karl are sharing a deeply poignant moment just before the wedding--Noah’s wedding.
As the parent of a severely afflicted autistic teenager, this section brought waves of conflict. After a starkly realistic, unvarnished depiction of what life can be like for families with severe autism, here was yet another happy ending. Good for Noah, good for Karl, good for everyone. Miracles do occur. But yet again, we, those who might not be granted such a miracle, are left wondering, What about us?
This is not simply a case of Sour Grapes. The future--the autistic adulthood, when the options are lousy and services few if any--are what parents obsess about in the middle of sleepless nights. Who will love them when we’re gone? So we now see Noah achieving independence AND true love? Is this possible? Maybe it does suggest there’s hope for all of us, for all of them, but we know the reality, and its ugly jealousy that I feel most.
Then, in the final section, “Reality,” Karl pulls out the rug, beginning with a reproduction of a report about the 40-year-old Noah, issued by the state institution where he now resides. And, it is devastating.
The prior chapter, Noah’s triumph over the disorder, was fantasy:
"I dreamed that happy outcome…as therapy, as a study in what if, as an attempted answer to the great question: what if Noah could talk? What if Noah were normal? What if? What if?"
These are familiar thoughts for such families. “What ifs” join the “what nexts” in those haunted and fitful nights.
This is not a story with a happy ending. As autistic children become autistic adults, what then? These are people who, in many cases, will require intensive services for their entire lives, and to see what this means for Noah and others like him is horrendous. It is not a happy life, not for the family, and certainly not for Noah.
And, he is a celebrity, not some anonymous autistic. It is Noah, about whom books have been written with his name in the title, and TV features have appeared. If this is how he ends up, what about the rest?
Greenfeld has shown us, with power, honesty and heart-rending sensitivity, the severely autistic population as it ages, and the clock ticks.
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Chicago-area psychologist David Royko has been clinical director of the Marriage and Family Counseling Service at Cook County Circuit Court since 1994. He is the author of the book "Voices of Children of Divorce," and he and his wife are the parents of twin teenage boys, one of whom is autistic.