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Boy Alone: A Brother's Memoir

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Greenfeld has written a powerful, maddening book, pitting sentences that are a joy to read against a raw honesty that is almost impossible to accept. It is a work of philosophy as endurance contest. The story of his profoundly autistic younger brother, Noah, is a descent by degrees, the deterioration of a child who begins with all the ordinary promise of his big brother but then slides irrevocably to become a mute and sometimes violent and possibly insane adult.

In the burgeoning field of works on autism, this book is like a hatchet thrown at the canon door. The idea that the best parents cannot save a child is rejected with a kind of violence by the prevailing talk-show culture, but that is exactly what happens here. Noah walks into a relentlessly upbeat field of miracle cures and made-for-TV empowerment and overly moralistic breakthroughs with a terrifying defiance. Most of the growing number of new books on this subject are written by celebrated doctors and celebrities and shamen-dudes who address the uplifting and fascinating cases of high-functioning children who just need the right push to find a grip on reality and rise up to lead satisfying lives. As desperately as Karl seems to want this, growing up stoned and alienated in 1970s and `80s Pacific Palisades, it refuses to materialize.

Instead, Karl's memoir addresses the ineffable, the humanity that inhabits a well-educated and successful family whose child does not get better. Karl's father, screenwriter Josh Greenfield, who himself wrote three highly-regarded books on Noah, and his mother, Foumi, who wrote novels based on her experience, do everything that superhuman parents can do: they shatter the prevailing Freudian treatment models that imprison their child, pioneer operant conditioning, create diets and schools and routines for caregivers. They devote 20 years of their lives. And they admit that they fail.

With the same honesty and ear for storytelling that has made Karl's other books and stories such great reads, he rips into one of the most un-American of subjects: helplessness. When the lottery doesn't hit. When wanting yields nothing. And in the end, he deploys a literary device that is cruel and devastating, driving the point home with a hammer blow. He's such a good writer that it really hurts - even now, weeks after finishing this book. And for that he's to be admired. And forgiven.

"Time keeps on slipping, slipping, slipping,
Into the future.

I want to fly like an eagle, till I'm free.
Fly like an eagle, let my spirit carry me."
----Steve Miller Band, 1976

At last! For years I have hoped Karl Greenfeld would share his experiences of growing up with his younger brother, Noah, whom Karl describes as "the most famous autistic child in the United States." Karl's father, Josh Greenfeld wrote a trilogy of brutally honest books about life raising his boys. The Noah Trilogy, as "A Child Called Noah," "A Place For Noah" and "A Client Called Noah" have been called have helped unmask the myth of saintly families who cheerfully sacrifice all for a member with multiple challenges. Josh Greenfeld's books are refreshingly brutal in their unabashed honesty.

Before and After Zachariah: A Family Story About a Different Kind of Courage, which began as an article in the January 1980 issue of "Redbook" and was later expanded into book form mentions "A Place For Noah" by describing the "patchwork after school programs of the day care center." This book also describes the plight of the multiply challeged and the dire need for good placements.

Karl, long relegated to the background because of his younger brother's great needs has finally taken his turn at bat. Born in Japan on November 26 1964, some 18 months before Noah's birth on July 1, 1966, Karl describes his life in the New York suburb of Croton, unaware of a life before and without Noah. He describes his life with Noah; as boys he said he and Noah did not grow up together; they grew apart.

In 1978 "60 Minutes" aired a segment about life with Noah; a follow up to Noah's story was broadcast in 1998. It is interesting that Karl said in 1978 that he did not want to be on television because, according to him, "he hadn't done anything" and that the story was really about Noah. Fortunately Karl does make an appearance in the segment, which would NOT have been nearly as moving or as effective had he not.

Interspersed with passages from his father's diaries, Karl's voice resonates loud and clear. His impressions appear to jibe with that of his father's; over time, the two would lock horns over many issues, such as Karl's burgeoning independence and sense of self.

Karl himself is described first by Josh Greenfeld in the Noah trilogy by his distinctive beginning. A handsome, Eurasian man, Karl reflects on being a member of a biracial family. Karl's mother Foumi is Japanese; Josh is Jewish. In "A Place For Noah," Karl describes himself as "half-Jewish and half Japanese; half Buddhist and half Jewish" and identifies Asian items and products in the household, such as foods and their car, which was a Japanese import. He draws on his Asian heritage, musing on how his work ethic differs and even clashes with Foumi's, who cannot understand why Karl has taken such a lackadaisical attitude toward school. Josh even enrolls the boy in a Japanese juku, or "cram school" so as to give him a leg up in mathematics. Karl is the only member of the class who is Eurasian and unable to speak Japanese. Sadly, the juku does not meet Karl's needs at that time.

Bright and resourceful, Karl in adolescence meticulously mapped out war zones and strategies in his own home, using military model weapons as props for his detailed strategy. School was not a priority for Karl during his adolescence; he spends much of those years taking drugs and running with a questionable crowd.

Like Josh, Karl is delightfully brutally honest. He describes his fall from grace; his years of sinking and slinking deeper into drug abuse and trouble. As Karl's challenges arise, Noah's recede slightly. By 1979, Noah, then 13 is enrolled in the Behavior Modification Institute. Noah serves several months there until it is discovered that he is being abused. He was withdrawn from the BMI (called OCC in "A Place For Noah") and once again the focus was understandably back on Noah. Severely autistic and cognitively delayed, Noah's self help skills remain marginal at best, absent at worst. His lack of speech continues to be a problem. Luckily, the Marlton School for the Deaf accepts him in their Special Program and it is there that Noah learns rudimentary signs and does well under their program.

By the early 1980s, the Greenfelds come up with the ingenius solution of buying a second house, so that Noah can live in his boyhood home with caretakers and they can enjoy respite in a home in the area. They continue checking in with Noah and Karl even spends some nights with Noah. Upon Noah's graduation from Marlton, Karl accompanies him to the school dance, where he is ready to do battle for Noah when his deaf classmates look askance at him.

Noah's caretakers range from a sexual predator named Ben to two very kind men from Japan who help him master many new skills. One has Noah on a strict exercise regimen, taking him out running on a local track. The other teaches Noah how to swim. Josh even said in "A Client Called Noah" that Noah loved the two men from Japan and thrived under their tutelage.

Karl, after years of backsliding into the abyss of drug addiction, graduated from Sarah Lawrence in 1986 and carved out a career for himself as a writer. He is amazingly self-deprecating in re his career of choice. He says his decision to be a writer underscores "a lack of imagination." Au contraire. His decision speaks to a real talent, one he inherited from Josh and Foumi, both of whom are published writers. He continues his steady climb uphill, after a stint in rehab in the 1990s. He later marries his long-time girlfriend, Silka and the couple are blessed with two daughters.

Karl's brief thumbnail sketches of his girls and his pure love for them (Josh described loving Noah as "purity;" Karl would later use this term in describing paternal parental love for his girls) are quite heartwarming. Silka's steadfast determination to stand by Karl's side as he struggles through rehab makes me think of the 1976 Steve Miller classic, "Fly Like an Eagle" and the hymn, "On Eagle's Wings." Karl does take off on Eagle's Wings and he does soar. By claiming his literary voice, he finds his place in the literary world with several published books to his credit.

Karl is also a gifted story teller. He is a master at taking his reading audience along for the ride. Gary Wright's 1975 "Dream Weaver" could easily be the soundtrack for the last chapter of this book. Without spoiling anything, let's just say that he is very good at convincing his audience and then he cleverly comes out from behind the curtain to take his bow.

I love this book.

Karl Taro Greenfeld's new memoir Boy ALone is a searing account of growing up in a family with an autistic sibling. In a world where autism is rising exponentially, we hear all too rarely from the brothers and sisters of autistic children. Here Greenfeld describes, sometimes in harrowing detail, the strains of living with someone who is severely autistic. The family's attention inevitably centers on Noah, the autistic brother. Greenfeld deals honestly and compassionately with his family's struggle to find an answer to Noah's condition and takes a cold, hard look at what autism means for the three generations of his family who cope with it. This beautifully written book is not just an account of a family dealing with extraordinary circumstances but a reflection on the meaning of family and a powerful portrait of childhood.

As a mom to a 7 year old who has autism, I've read dozens of books on the subject, but never one like this. It is an incredibly important book, told from a perspective which is not often given voice, and crafted by a writer with an astonishing gift. The book provides a history of the development of autism treatments through the eyes of someone who lived it through his brother. Today, in the midst of a baffling array of treatments, it is all too easy to forget this history. Like many books written before it but set later in time, this one chronicles in brutal detail what it's like when a family becomes centered around rescuing a child with autism. And it provides a much needed acknowledgement that no matter how hard parents and siblings try, it may not work. For the most part the book respects the importance of holding onto hope, at least until that becomes impossible. It is much needed because those books that now gain the most notoriety are mainly miracle stories. They too are critically important, but they do not provide the whole story. Living with autism is beyond difficult for everyone in the family, and this author's point of view as a sibling should be heard. He goes out of his way to point out that his problems are not his brother's fault, that he is "perfectly capable of [his] own f***-ups." He has no more anger at his brother than many people harbor toward their typically developing siblings.

But the device the author uses near the end of the book is just too cruel for readers who are still working and hoping for their autistic children. If you are a family member actively engaged in trying to give an autistic child a chance at the best life he or she can have, I suggest you read this book, but only at a time when you feel you can handle yet another kick in the gut.

I think the book could have been just as good without its most brutal (and somewhat contrived)twist. It just hit me as sort of a cheap shot, though at whom it was aimed, I'm not sure. In the midst of the battle, you need realism, but you don't need to get slapped around. You need hope that you will succeed in helping your child. After all, you wouldn't be the first. It's true that you may not but you will not if you don't try.

The author, in fact, does (sort of) hold out (some) hope for today's autistic children, though he may or may not be particularly qualified to comment on how likely they are to be on the receiving end of a breakthrough.

The value of this book is that it may be shocking enough to bring attention to the fact that nowhere near enough is being done to prepare for those children with autism who will not experience a miracle and will need massive amounts of support. The problem is, most of the people who will read this book are already too well aware of that and have few resources left with which to do much about it.

Greenfeld writes beautifully about growing up with his severely autistic younger brother Noah. When Noah was born, doctors were still treating autism after the Freudian model--that is, they first treated the parents, whose coldness toward the child, it was believed, was the root of the problem. The Greenfelds moved to Los Angeles to take part in a more progressive behavioral approach. The book provides a very readable history of autism treatment, but Karl's coming of age in a family that spent most of its time caring for Noah is fascinating. He describes in very honest detail the subtle (and always imbalanced) rivalry that he develops with his brother. But his affection for Noah is evident throughout, and that's really what the book is about--that ineffable brotherly relationship made even more mysterious by Noah's condition.

Karl Greenfeld's story of growing up with a low functioning autistic brother is one of the most honest and profound accounts I've ever read on autism. What struck me the most is the constant, day and night care and attention that must be given to insure that the autistic child, and later adult is kept clean, clothed, dressed, and doesn't harm themselves or other people and the impact on other family members. Noah was a beautiful child, locked somewhere inside his brain and it was unknown how much he really understood or even how much awareness he had of the world around him. He seemed to know people and remember certain things, but to what extent? How much was he able to look ahead? He obviously felt frustration, had basic survival instincts but could also be destructive, not only to people and things around him, but also to himself.

This is the story of a family, the parents and their other son, Karl who gives us an honest and personal look into the family dynamics of living with Noah and trying to make things better, to try to make him whole again. This was a mother who read and studied everything she could and tried all of those things and more to try and make Noah a more normal little boy, from diet, to different programs and exercises, vitamins and supplements and techniques that were being studied over the years. Any reasonable possibility was given a chance. Unfortunately, none of these really made a big improvement. His parents gave up much of their lives for this child and Karl, the brother ended up with problems of his own such as drug addiction and poor grades in school which he doesn't blame on his brother, but seem to be a response and maybe just the need to escape a situation which is, for the most part, not one that he can escape for long. The book shows his desperate longing for things to just be normal again, for parents that have time to devote to him too. The whole family, and even Karl is involved with keeping a careful watch on Noah. It's a 24 hour a day job.

Karl states several times that life with Noah and all his attending problems is the only life he has ever known and it is what's "normal" to him. But he is embarrassed to bring friends to his home, overwhelmed I think by the guilt of his own feelings sometimes toward his brother. At the same time his love for Noah comes through along with his feelings of responsibility. How does any sibling deal with the fact that an autistic child needs so much care and so much one-on-one attention on the sick child leaves the other family members devoid of attention? His writing discusses these difficult feelings.

Parts of the book that dealt with Noah and his life as an older teenager and adult were just heartbreaking. I feel much anger toward the way our health system deals with mental illness, autism in particular. The things Noah's family had to deal with are devastating. Although Noah was probably unreachable, and his situation is extremely difficult, decent care should be available. From what Karl has described in his book, the mental health facilities in this country are not what I would call acceptable. It is a disgrace. And the people who suffer most, along with the patients like Noah, are the families like this one who have done everything imaginable to try and make things better, only to have this outcome.

There was only one part of the book that I didn't like, near the end. I won't go into detail here because I would be giving away part of the story. But I will say that while I felt the section should have been included, it should have been explained and handled in a different manner.

This was an excellent book, giving much insight into a subject that few people who aren't directly involved, including myself, will know little about prior to reading this book. It's heartbreaking, but an important book that will add to everyone's understanding and I hope it is read by a large number of people.

As the mother of an autistic young man, I could relate somewhat to the family descriptions of the Greenfeld family; in fact, at times, it was so painfully resonant that I had to put the book down for a few days. I was astonished by Karl's honesty, and by his inability to see anything positive in his brother (I am not judging this, I am merely shocked by it!). I felt that actually Karl had a lot of knowledge of Noah, even though he insisted on calling him "unknowable." I could also feel love and longing coming through the words, even though Karl rarely, if ever, acknowledged this. The book was SO realistic that I admired it very much, and though it was fascinating, it was also very sad. Truly beautifully written. --Susan Senator, author, Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts

For a moment during my reading of this book, I was furious. I won't explain exactly why, so you can read the book yourself with the full impact, but basically, by means of a literary trick, I was given extreme false hope.

I am exactly the same age as Karl, and growing up, I read and re-read his father's books about Noah. I don't know why I was drawn to them---perhaps the same reason many people are drawn to accounts of autism, as they find the disorder fascinating. If I were more of a believer, I'd say I was led to read them. For now I am the mother of a 5 year old autism. She is not high functioning---not as low functioning as Noah, more in the middle. She is difficult and wonderful, fascinating and frustrating. I am very aware that now she is young---that people are drawn to her beauty and what they feel is her hidden potential, and that it won't always be the case. This book is ultimately in many ways a tragedy. Karl's parents gave everything they possibly could to Noah, and it didn't really help. Noah is now an middle aged man, no higher functioning than he ever was. He is in an institution, he has been hurt and abused, and one could certainly argue that all that was done for him was a waste of time. Was it? Is the fact that all three other family members have been inspired enough to write tremendously moving books about him enough to give his life worth?

While this book was tricking me, I was crying tears of hope and happiness for Noah and for my daughter Janey. When I realized it was a trick, I felt like I had been punched. However, now I realize why I think this was done. Every single day, that kind of trick is being played on parents of autistic kids. They are told if you do this, if you do that, if you do EVERYTHING just right, your child will get better---they will have a bright future. If it works, great. You can feel proud of yourself. If it doesn't, you didn't try hard enough---it's your fault. It's like the bad old days of "The Empty Fortress". Someday, it will be realized that many of the 18 month olds that being called autistic and then being "cured" were never autistic to start with, or were very high functioning. Someday, kids like my Janey, baring the miracle that I certainly pray for, will no longer be cute little children, and there needs to be a change in society so their lives are better than Noah's.

Every parent of an autistic child, everyone whose life is touched by an autistic child or even more, an autistic adult, needs to read this book.

As the mother of a 33 year-old disabled son and a lifelong journal writer, Josh Greenfeld's three "Noah" books meant so much to me, for their truthfulness and sheer readability, so I was very eager to read Karl's story. I was immediately engrossed; he writes beautifully and with the same stark honesty and integrity as his father. Without giving anything away, I will say that I believe the much-discussed "twist" powerfully illuminates the longings of those of us who struggle with the love and heartbreak we feel for family members who have suffered due to their disablities. I never did like the "Pollyanna" approach; it never helped or inspired me. Only honesty does, and this is such a vitally honest and fascinating memoir. I loved it! There and Back: A Journal Companion for Special Needs Parents Mary Lee Moser, author

I am so pleased that Karl Taro Greenfeld wrote this fourth book about his autistic brother, Noah. I had read the previous three books his father, Josh Greenfeld, wrote about Noah several decades ago when Noah was still a child and, as I read magazine articles Karl has penned as an adult, I always wondered how Noah fared in later life. It's also quite fascinating to read books about the same person as seen literally from two very different perspectives. We too often read about families with disabled children in which everyone feels so blessed by all they've received by living with "special people". Somehow, all those stories sounded a bit too rosy to me.

Karl Greenfeld definitely does not leave the reader feeling that life with Noah was ever rosy from any perspective. Some readers, especially those with disabled family members themselves, may feel a bit put off by Karl's blunt honesty not only about his feelings as Noah's sibling but the almost incomparable feelings of Noah's parents. Noah did not make anyone's life charmed in any way, though he was obviously very loved and cared for. Depictions of hard physical labor, exhausting days and nights, careers delayed and blunted, and overwhelming frustration with educational and social agencies that could not really help assuage the pain Noah could not help but cause come through Karl's book unleavened by gloss. And the many years of Karl's drug addictions and criminal behaviors only added to the Greenfeld family's torment.

This is also a book without a happy ending, unless one stops reading at the conclusion of an ill-advised and confounding dream sequence. Except for Karl's eventual rehabilitation and normalcy with his long-suffering wife and two beautiful young daughters, there is no cheerful future for the people in Noah's life. We read daily about how early detection and early intervention with autistic children often bring miracles, especially with the children of Hollywood celebrities, and especially those who fan the flames of supposed vaccine-induced autism. Why, with all those special diets, mega-vitamin supplements, chelation and other odd but unproven remedies, these children can leave the worst manifestations of their autism behind. It's sometimes all too much when the reality, especially with those at the low end of the autism spectrum, is far far more like Noah's story. Modern techniques and early intervention would most likely have afforded Noah many more skills than he was able to learn 40 years ago but there will still be adults like Noah who cannot ever live independently nor free of their demons. It is not always the pretty picture stars like Jenny McCarthy seem to project.

As for the crowds of parents who still, despite all the scientifically proven evidence to the contrary, shrilly insist that mercury-laden childhood vaccinations are the cause of the spectacular rise in numbers of children diagnosed as somewhere on the autism spectrum (as opposed to better recognition of symptoms), Noah presents an excellent example of an autistic child who displayed subtle signs that all was not right almost from birth, long before he received any vaccines or exposure to mercury whatsoever. If parents could see a time-lapsed video of the children later diagnosed as autistic, they would likely see the early indications of the disorder they swear never appeared before an MMR or PTD vaccine almost overnight changed their "absolutely normal very verbal" children into other-worldly non-communicative beings with strange behaviors. Thankfully, more and more physicians today are becoming attuned to the very early signs of autism and that more research will better enable those affected to attain a meaningful and integrative life.