Noah Greenfeld was probably the most famous autistic child in America during the sixties and seventies thanks to his father’s, Josh Greenfeld’s, brilliant and often painful accounts of raising his son.  In A Child Called Noah, A Client Called Noah, and A Place for Noah, Greenfeld chronicled his family’s struggle to educate and protect a child with severe autism. It was a time when few people knew much about autism and what was claimed as knowledge was as likely to be fraudulent as not.  Bruno Bettelheim had founded his Orthogenic School in Chicago and, in his influential book The Empty Fortress, claimed that autism was the result of “refrigerator mothers”, women who unconsciously hate their children and wish they had never been born.  Parents were expected to surrender their children to therapists, not see them (sometimes for years) and submit to therapy themselves.  It is a testament to the Greenfeld family’s willingness to try almost anything that Greenfeld met with Bettelheim and seriously considered that option.  Upon reading The Empty Fortress, he presciently concluded that the man was “a fucking fraud”.

       The Greenfeld family’s visit with Bettelheim is one among many futile pilgrimages recalled by Karl Taro Greenfeld in his memoir Boy Alone.  Countless doctors, group homes, institutions and even a consultation with Linus Pauling about the possible benefits of vitamin C make up the list. K.T.G. was often taken along for the generally disappointing ride.  In Boy Alone, he covers much of the same territory that was described in his father’s books but from the revealing perspective of a slightly older (two years) sibling.  While for his parents Noah’s autism was a catastrophe that suddenly burst into their lives, for their older son, “How could I have seen that Noah wasn’t like other boys? ...What did I know of childhood development, normal or otherwise? I recall all the worry and conversation about Noah as steady background noise to which I would occasionally tune in”. 

        In time, K.T.G. would come to share his parents’ concerns.  He would also face the hassles of growing up as a teenager in an outlying suburb of Los Angeles.  In Boy Alone, he delves into his escapist obsessions with military models, Dungeons and Dragons, his petty thievery, his drug use, his loneliness, and his lack of stimulation by public education.  But, as he is for his father in his books, it is Noah who is at the center of his life:  “I don’t know Noah.  He is, I suspect, unknowable.  Yet he remains the center of my life.  I hate him for that.  If I could, I would never write about him, speak about him.  I would tell anyone who asked that I was an only child.  Yet he is my brother”.

       K.T.G. was born in 1964 in Kobe Japan to a Jewish American author father and a Japanese artist mother.  J.G. had had some success as a playwright and novelist though K.T.G. quotes Norman Mailer that as a writer he was a “gnat weight”.  His wife, Foumi, aspired to be a painter and in Japan had shown her work at the celebrated Nika Exhibition.  The birth of Noah in 1966 would radically change the course of their lives.  Confronted with the reality of caring for a severely disabled child, it was Foumi who first sacrificed hopes for a career.  J.G. would increasingly find that his goal of writing literary masterpieces was being sidelined by the austere demands of earning an adequate income to support the family and provide for Noah’s special needs. He eventually pursued a career in screen writing, earning an Oscar nomination for Harry and Tonto in 1974.  However, his greatest financial and perhaps artistic success was his series of books based on his journals about his son.

         At first there were few signs that Noah was not an average baby.  At the time there was no DSM IV Diagnostic Criteria for Autistic Disorder.  There were no autism handbooks indicating what worried parents could expect to see.  But Noah did seem unusually happy to be left alone, he vomited frequently, had a weak suckle and his motor development was slow.  He rarely turned over and was still not walking at two.  In the area of speech development, he seemed precocious, using words and phrases by the time he was one.  “My parents gladly note the milestone and banish some of their worry.”  Unfortunately, this apparent success would be erased in subsequent months.  Noah became non-verbal and his behaviour became more and more problematic.  He was assessed as having a low frustration threshold, poor attention span, impulsivity and "multiple fears".  “At no time was there any evidence of true expressive language patterns”.

        By the time Noah was three, it was clear that something was very wrong and the family began to crack under the strain.  Foumi was frequently weeping and worried that her eldest son would have difficulties with other children because his brother was so abnormal.  The need for constant caretaking took its toll: “They haven’t had a full night’s sleep in a decade, always getting up at least once to wipe Noah after a bowel movement or clean up his mess.  They are worn down.” Indeed, J.G. became so worn down that he contemplated murdering Noah in one of his books to ensure that he could not imagine getting away with it.  He appeared on television advocating euthanasia for the severely autistic on the grounds that the options open to them were worse than death.  The relationship between the Greenfelds became increasingly frayed with screaming and occasional minor violence breaking out between them.  For K.T.G., “their marriage has biologically backfired.”  Eventually, as Noah grew larger, K.T.G. began to worry for the safety of his parents: “It is becoming harder for them to fend off his occasional attacks, to fend off his scratches”. 

         As he grew older, K.T.G. experienced his family life as a state of war.  He screamed at his parents that they were "fools and idiots for wasting their lives on Noah”.  He retreated into his fantasy life (often centered around military strategy) and ultimately into drugs (cocaine, amphetamines, Valium, Darvocet, Quaaludes, and Mandrax): “I have wonderful chemical solutions to my Noah anxiety”.  (His drug use finally led to a stay in a drug treatment facility in Oregon.)  He was ashamed to be “locally famous for having a retarded brother”.   He got stoned while “babysitting” Noah and lost him in the neighborhood. 

        Yet, despite all the problems, it was K.T.G. who protested when his parents seriously considered putting Noah in an institution.  At one point, he tried to share the same bedroom for he often found Noah’s babbling and cooing comforting.  He finally gave up after suffering from sleep deprivation.  And sometimes there were moments of serenity: “…we sit on the sloped lawn in the sun while we wait for the bus, Noah rocking back and forth and me reading the sports page.  Sometimes he puts his head on my shoulder.  Those are good moments.” 

       Toward the end of his memoir, K.T.G. acknowledges those who will say that he should have felt more privileged to have had the experience of Noah.  He admits to having learned more about “cynicism, defeatism, negativity and suspicion” than “patience, service, generosity and selflessness”.  He thinks his best chance at happiness is to abandon Noah, “but I know I can’t.”  He says he is “fueled with guilt” but doesn’t know why.  At the same time he wants to have hope.  In the age of Oprah, he tells us, surely there will be some kind of solution. 

         Like his father before him (and his mother who went on to write novels exploring autism in Japanese), K.T.G. has charted new territory.  Also like his father, he tells his family’s story with stark candor and courage.  These are flawed people like the rest of us, and they were frequently not up to the challenge of such extraordinary circumstances.  Neither father nor son is afraid to admit it.  Sometimes their interactions with Noah probably did more harm than good.  According to K.T.G., their father hit both him and his brother “plenty of times”.  In times of stress, ignorance and confusion, perhaps they placed undue pressure on Noah who could never meet their expectations.  Still, the option of abandonment and surrender was not embraced, though it is a common enough choice for other families in the same position.

         There are more consoling works than Boy Alone, like Barry Kaufmann’s Son Rise and Temple Grandin’s Emergence.  But these are not books about people like Noah and his family.  If we are to have any hope of understanding their lives, we have to begin by listening to their stories.  Some will not have the happiest of endings.

Boy Alone: A Brother's Memoir,by Karl Taro Greenfeld. ISBN: 9780061136665; ISBN10: 0061136662; Harper; 2009.