Books Special

By Adam Feinstein

From Volume 4 Number 10

Send in the Idiots, or How We Grew to Understand the World
by Kamran Nazeer
230pp, Bloomsbury, £12.99

The Jumbled Jigsaw: An Insider's Approach to the Treatment of Autistic Spectrum 'Fruit
by Donna Williams
392pp, Jessica Kingsley Publishers, £14.99

Daniel Isn't Talking
by Marti Leimbach
281pp, Fourth Estate, £10.99

Eye Contact
by Cammie McGovern
292pp, Viking, £12.99

Born on a Blue Day: A Memoir of Asperger's and an Extraordinary Mind
by Daniel Tammet
242pp, Hodder and Stoughton, £16.99

Autism From Within - A Handbook
by Hilde de Clerq
336pp, IntermediaBooks

ACCORDING to the latest study by the Atlanta-based Centers for Disease Control and Prevention, as many as one in 150 people today may be diagnosed with an autistic spectrum disorder. All these books offer timely insights into a condition which, while remaining enigmatic, is slowly yielding up some of its secrets.
    All of the books have a strong autobiographical element, although two are presented as novels.
    Kamran Nazeer, the author of Send in the Idiots, is a remarkable character. In 1982, at the age of four, he entered a small private special school in New York, joining a dozen other children diagnosed, as he was, with autism. At the time, he could not speak a word. He is now a high-powered policy adviser in Whitehall. This book records his travels around the United States more than 20 years after his schooldays, to see what has become of some of his former class-mates. These turn out to be fascinating encounters.
    The first is with André, a bright man who is working on a project developing artificial vision for computers and robots. He has overcome his difficulties with conversation by speaking through puppets. He was once turned away from a speed-dating evening because he arrived with a puppet he had just made called Sylvie.
    Randall is very different. He is in a relationship with Mike, a budding novelist. Nazeer points out that this is unusual, because many people with autism shrink from being touched by others. (In contrast, Temple Grandin, probably the world's best-known person with high-functioning autism, actually preferred to be squeezed tightly, and, based on her observation of cattle in chutes, pioneered the so-called "hug box" to provide deep pressure stimulation evenly. Her device has been used in a number of schools for autistic children.)
    Craig works in the same field as Nazeer: he writes speeches for politicians and has an obsessive interest in politics. Unusually for a person with autism, he telephones people for social reasons, calling them for no other reason than to talk. Fluent though he is, it is in the speeches designed for other people that he expresses himself (rather like André uses his puppets). The truth is that Craig's speeches are
powerful because he understands rhetorical tools, not through their being emotionally affecting.
    The most profoundly moving story in this book is that of Elizabeth, who killed herself at the age of 26 in 2002. Nazeer learns about her through her parents. Elizabeth - unlike André or Randall - was on what Nazeer calls the "harsher" end of the autistic spectrum.
    At school, she had to use signs to ask for things. By the age of 12, her language
development had picked up, but so had her tantrums. She had a difficult relationship with her psychologist, who bizarrely encouraged her to cherish her sadness, advised her not to
make too many friends and asked her to tell him things before she told them to her
parents. Astonishingly, Elizabeth managed to give piano lessons for a while, although she
could not always remain patient: she threw the music score at a nine-year-old pupil. It was hard to say what had prompted her suicide: she left no note.
    In the final chapter, Nazeer meets up with Ira, the former director of his school, and
Rebecca, one of the teachers, neither of whom considers him to be autistic any longer. They recall that Leo Kanner, who was the first person to define the term "autism" in its current sense, back in 1943, initially blamed the parents for the condition. This disgraceful "refrigerator mother" theory was later championed, harmfully, by the concentration camp survivor Bruno Bettelheim and his followers. We now know that autism is a neurological disorder, although the causes remain a mystery. What Nazeer does not point out here - and this is an important omission - is that Kanner touchingly asked the parents to forgive him for blaming them in a speech in 1969. Nazeer also repeats the notion that autism occurs primarily among the children of upper and middle-class families, again without noting, as he should have, that autism is no respecter whatsoever of social class. But these are minor quibbles. This is a wonderful book which explores the human variety of autism.
    Those who have read any of Donna Williams's previous eight books will know that she is one of the most articulate and perceptive writers on autism today. She is also autistic herself, and was found to have an IQ of just under 70 at the age of 26, putting her in the "mildly mentally retarded" or "intellectually disabled" range. According to her father, she did not talk for weeks at a time. In her latest remarkable book, The Jumbled Jigsaw, Williams presents autistic spectrum disorders as a whole range of often untreated underlying conditions which can combine to form a "cluster condition" or "fruit salad." One fruit might represent information-processing issues, another identity and personality issues and still another self-help skills. Her professed aim is to dissect the label of autistic spectrum disorder so that it may never be seen in conventional terms again. She hopes that, by correctly identifying which underlying conditions affect early childhood development in an "autistic" way, we should be able to produce a plan of action setting out which types of help are going to work best for which people. She looks at the "toolbox" for fixing problems - and rightly
condemns those practitioners who recommend an expensive, one-size-fits-all biomedical approach. She notes, however, that it is equally absurd to maintain that nutritional medicine, or allergy testing, can have no medical benefit to people with autism.
    Williams astutely draws attention to the destruction that autism can wreak on families: "The autism world is so traumatised by the old 'refrigerator mother' accusation that it has sometimes gone to another extreme, portraying its own group as incapable of harbouring occasional seriously troubled and damaged families in which some children with autism have added developmental burdens ... Sometimes, the child's autism will put such a strain on the family as to cause it to break down." At the same time, Williams emphasises the hidden potential of autistic individuals. She cites the striking case of a man with autism who had been taught the alphabet for 14 years in a special school before he finally told the teachers that he wanted to learn about art history and physics. When asked why he had continued for so long to give the impression that he had severe learning difficulties, he explained that, as they had assumed him to be incapable, he had given
them exactly what they had expected.
    Marti Leimbach's Daniel Isn't Talking is a beautifully crafted and immensely touching novel which also depicts the dramatic effects autism can exert on the dynamics of the family. Leimbach, whose own son is autistic, has Daniel's mother, Melanie Marsh, describe her son, immediately after his diagnosis, as "a slightly alien, uneducable time-bomb."
    The sense of loss is especially well captured. So is Melanie's nagging, if irrational, sense of guilt: did the pesticides sprayed on crops back in Virginia cause her son's autism, she wonders. Most parents of autistic children, like myself, will recognise elements of Daniel's behaviour: he is a Houdini-like escape artist, will not let his mother touch him, is a fussy eater, has an obsession with Thomas the Tank Engine, has frequent ear infections, is tormented by loud sounds, from barking dogs to doorbells, and is appeased during shopping trips only by being plied with sweets. And above all, like so many children with autism, he is lovely to look at. Melanie points out that mothers who claim that autism is not a disability but a "difference" must have a high-functioning child, not one who smears their own faeces on the carpet and rocks back and forth in silence. In contrast, she describes life with a severely autistic child as "hacking out a jungle with a scythe." After Daniel told her he loved her for the first time, it felt, she said, as though he had taken up his own scythe.
    The changes in Melanie's husband, Stephen, are particularly distressing. Where once he had lovingly taught her to waltz and told her in perfect French that her body was like a garden, he now freely complains that he cannot live with the fact that Daniel "will never
be normal" and does not want to spend his time around "damaged" children.
    While Melanie launches a healthily aggressive attack on Bettelheim's dangerous "refrigerator mother" nonsense and his baleful influence, I do not agree with her hardline opposition to special schools: "What is so great about a classroom, anyway? It holds no magic ... How will it help him, to be with children whose behaviour is abnormal? ... All he will do is imitate children who aren't acting like
ordinary children in the first place."
    Melanie chooses to educate Daniel at home, turning to the method known as applied behavioural analysis (ABA) and to a cheerily optimistic and patient teacher, Andy O'Connor. He is tremendously understanding of both Daniel (in whom he sees something miraculously unique) and Melanie: "You're an autism mum. I see them all the time. I saw you that first day we met, how you agonised over your boy, mute in his pushchair while all the other pre-schoolers made their clever observations about the world; I see how you
worry now over his odd way of walking, the animal noises he will sometimes make instead
of words. And I see how no amount of pain in the experience of caring for your son will
put to death the fire of love you have for him."
    Cammie McGovern's Eye Contact is an intriguing crime novel about a nine-year-old autistic schoolboy, Adam, who witnesses the brutal murder of a fellow schoolgirl from their
special-needs class, and the attempts of the police, and his mother, to elicit the truth
of what actually happened and to prove Adam's innocence. The problem is that Adam
recognises people by their clothing, not their faces (as Donna Williams used to), is more
interested in the workings of machines such as the inside of a piano than in human beings
and can identify pieces of classic music but cannot answer the question "What's your
    McGovern, like Leimbach, has a son with autism, and depicts Adam and the frustrations, as well as joys, of his relationship with his mother tellingly. "It is as though he is one of those old-fashioned cars you have to crank into working." And whereas her brother,
Larry, seems to have empathy only for the fate of Chinese sparrows, Daniel has too much
of it. This is a reversal of the usual concept of autistic children but one which I have
heard expressed by several parents.
    McGovern says she got the idea for writing the book when her son was four and began repeating snippets from his favourite videos. She wondered what would happen if he held a secret and a whole community was hanging on his words. The author's aim was to show that there was an important role for autistic children to play in the world, and this engaging novel, featuring a boy who holds the key to a horrific crime, succeeds admirably in her uplifting intention.
    Autistic savants are remarkable individuals. The world's leading expert on the syndrome, Dr Darold Treffert, once told me: "They have taught me as much about matters of the heart as circuits in the brain." They are also extremely rare - at most, 10 per cent of people with autism have savant abilities. One of the most extraordinary of these is the Londoner, Daniel Tammet, the author of Born on a Blue Day.
    Like many people diagnosed with autism (or, in his case, Asperger's syndrome), Tammet needs very strict routines: he eats precisely 45 grams of porridge for breakfast every morning and counts the number of items of clothing he is wearing whenever he leaves his house. Again, like many people with Asperger's, he has poor physical co-ordination and finds it difficult to handle the social processes involved in making friends - although he does have a partner, Neil, a software engineer. Yet it is Tammet's outstanding mathematical and linguistic talents which make him particularly unusual. He can perform
impossibly difficult mathematical calculations instantly and can recite pi to 22,514 places from memory. He also speaks 10 languages - he even learnt the fiendishly difficult Icelandic in a week.
    His synaesthesia - a neurological mixture of the senses - means that numbers hold an especially potent magic for him: 89 reminds him of falling snow and he likes 117, as he told the American chat show host David Letterman, because it is tall and lanky. Tammet also has temporal lobe epilepsy: one explanation for savant abilities is that left-brain injury leads to right-brain compensation (the skills most commonly seen in savants are generally associated with the right hemisphere of the brain). Tammet's book offers us a frank and fascinating account of his condition.
    Finally, I must wholeheartedly recommend Hilde de Clerq's wonderful Autism from Within - a Handbook. De Clerq not only has a profound understanding of the nature and culture of autism but, like her colleague in Belgium, Theo Peeters, she is blessed with an enormous capacity for compassion and genuine affection for the autistic people with whom she works.
    All these elements emerge to the full in this book, which is an invaluable treasure-chest of advice on how to work with, and comprehend, autistic individuals. Let me quote just one paragraph which will, I hope, give you an insight into Hilde's warmth and humanity: "Working with autistic people clearly has an ethical side. They often have a low self-image and, if you do not understand autism well, it is easy to discourage them - even of you have no intention to. A certain vision underlies most work with autistic people; we have to raise them well, teach them how to behave, how to adjust themselves. However, we tend to forget that people with autism have the same feelings we have and that their sticking-point has to do with understanding, communicating and dealing with those feelings. We are - in that sense - better equipped and should never take advantage of this."

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