“Really, the storms of adolescence are over,” says his mother. “He’s more confident. I am quite optimistic that the destructive side of him will lessen and he will become more easily integrated with other people’s lives. But he still needs a huge amount of input and always will.”
A tenacious optimism has characterised her whole experience of bringing up two differently autistic boys, George and Sam, as well as a younger son, Jake, 14, who has no disability. She wastes no time on self-pity because she has no time to waste. If there were a prenatal test for autism, she would think it as irrelevant and futile as a prenatal test for red hair.
“I don’t want to play down the very real problems,” says Charlotte, 53, “but I don’t wish it [autism] away. I never see it as tragic and never will. 'Tragic’ is the friend who has a badly brain-damaged daughter because of a medical error. George and Sam were not deprived of oxygen at birth. They were born autistic, a very different thing.”
When her sons are locked in a world of screaming and self-harming, she would welcome some safe treatment to alleviate their symptoms, but that is not the same as “wishing autism undone”.
“Gentle George, embarked on one of his huge, semi-abstract paintings, absorbed in his blues and pinks and greys: how should he be different?” she asks. And Sam, rollicking away at the keyboard in his bedroom and “singing” in a weird screech… “This is what Sam is.” In a corner of the sitting room, there is the wreckage of an upright piano that he has hammered into submission. “I’ll show you how much he likes this piano,” Charlotte says, opening the lid. Many of the bass keys are dead; others twang wildly out of tune. The upper keys are pristine: he is not interested in higher, lighter sounds.
Though they can be demonic, though the house is scarred by them, she sees her autistic sons as innocents inhabiting an alternative world and their freshness and originality often delight her. They are not acquisitive, malicious or competitive. “Sam might attack people but that’s only if he’s cornered. There is no spite,” she says. Sometimes they are a drain on family life, sometimes an enrichment. “Right now they have a good quality of life and are not significantly less happy than people of their own age.”
George, 22, is the dreamy eccentric, closer to the “holy fool” of ancient times, with no practical sense or ability to function independently, though he has gained in social confidence at his residential college. Sam the survivor, an anarchic, brooding, wild boy of Aveyron, seems knotted with energy.
“If you abandoned them on a desert island,” says their mother, “Sam would survive very well but George would not last five minutes. They are as different from one another as they are themselves different from Jake.”
The sleeves of Sam’s hooded top have been torn away because he prefers bare arms. He spends hours drawing with such force that he imprints the table beneath.
“There is a progression in his pictures,” says his mother. “He is having a long phase of circles with smaller circles inside so they look like bosoms. Sam draws over everything – walls, furniture, television screen. It’s quite funny to have breasts everywhere. I actually think they are meant to be the washing machine and tumble drier, a Sam obsession. Or they might be clocks.
“Some people might really hate having drawing all over their house. I rather like it. I suppose my standards have completely changed. We have inherited graffiti from previous generations of the family who lived here. Why shouldn’t Sam add his rather basic scribbles as well?”
The implacable calm and good humour she brings to bear on crises that convulse the household are the leitmotif of Charlotte Moore’s classic portrait of autism, George and Sam, which she has updated with a new chapter about her sons’ adolescent years (published next week). It cannot be the case that nothing has got her down. But nor has anything prevented her from getting up again. At one point in her book, she describes bundling an out-of-control Sam into the garden until his aggression abates. “He punched through the window, Tom-and-Jerry-style. There was a fist-shaped hole in the glass, but not a scratch on Sam. He reached his hand in, drew the bolt, came roaring back into the kitchen and knocked me down. There was little I could do other than allow myself to be kicked and bitten until the storm had passed.” Though she “didn’t enjoy this sort of incident”, she says she was never afraid.
George and Sam was first published to huge acclaim in 2004 and sold 40,000 copies, even though it had failed to reach the bookshops in the critical days following rave reviews. The novelist Nick Hornby, who has an autistic son, called it the first book about autism that conveyed what it was really like.
But what has happened to these strange boys and their protective younger brother in the seven intervening years? What has happened to Hancox, their much-loved, much-abused Tudor hall house in East Sussex, which by any law of averages should have burnt down years ago? (In a previous phase of throwing everything onto the fire, Sam fed a cushion onto burning logs, then took it out and popped it into a waste-paper basket. Jake raised the alarm.)
And Charlotte. Novelist, children’s writer and author of Hancox, the five-generation story of her family’s house, whose work has always had to take second place to the task of holding everything together. A single mother whose marriage crumbled partly from the strain of raising two autistic boys. A woman whose vigilance can never slacken and who will be needed by her sons for the rest of her life. Is she still sane?
Gloriously so, I would say. Charlotte has entitled her new chapter “What’s Wrong with Being Autistic?” – Jake’s reaction when his mother explained that if autism were observable in an unborn baby, the mother might choose to end the pregnancy. “Why would anyone do that?” he demanded.
“For Jake,” says his mother, “the greatest benefit of having autistic brothers has been his tolerance of human variety. He finds bigotry of any kind baffling.” Jake attends the local state school in Battle. When his friends come home, he never shows embarrassment at his brothers’ behaviour. When they trash his belongings, he never grumbles. It is interesting that two of his best friends are brother substitutes, aged 16 and 19.
George and Sam’s adolescence has not been as terrible as she feared. One piece of good fortune, she admits, is that neither boy, though physically mature, relates sexual sensations to bodily contact with others (see extract, above)
She says their sexual aloofness makes her life easier, “but it does show how profoundly different they are, and always will be, from other people. I can see a day when George might be ready for some kind of relationship but it’s not something I’m hurrying on. Life is much easier without it. I can’t imagine this will ever happen for Sam, but I have learnt over the years not to take anything as absolute. Things do change.”
Just how much is evident from the book, a joyful read despite the enormous question mark hanging over this family’s future. George is in his final year boarding at the Mount Camphill Community, a Rudolf Steiner college near Wadhurst, East Sussex, where he has flourished. What next? Most likely a home-based programme. After a “summer of hell” when Sam left the familiarity of his state-run special school, he has adapted to a varied home-based programme – three days with his inspired personal assistant, Simon Bashford (known as “Bash”), two at a day centre run by Autism Sussex in Battle, and weekends of therapy organised by his mother.
Again, the heart-sinking words: what next? Provision for autistic children is much easier than for autistic adults. What facilities there are have to be fought for, and extra-curricular therapy paid for. So far, the Moores have been lucky to have funded places.
Charlotte has a partner, Simon, who features strongly in the boys’ lives, and frequent help from her extended family. But their daily well-being still depends on her own continuing health and her ability to go on fighting their cause. “The difference between me and my friends is that my care of my sons has no end in sight,” she says.
In an ideal world, she’d have a (soundproofed) house for her sons where they could live separately under one roof, in a wide rural environment close to home. “They would have a rota of carers, but overseen by me. They would have a full timetable of interesting and healthy activities and this would be their lives. I have to confront the fact that it is not practical for them to be at home for ever and ever. My aim in the next few years is to be more dispensable.”
The detail of how this might come to pass does not worry her. It never has. She takes her cue from George, who when asked to make a shopping list, wrote: “I will see when I get there.”
Extract from new postscript to Charlotte Moore's book George & Sam
When people ask about autistic adolescence, what they really want to know about is sex. Well, I can’t speak for everyone, but in our case the whole business has been less dreadful than I had imagined. To date, neither George nor Sam has made a sexual advance to another human being. Both, certainly, are fully physically mature and functioning, but as far as I can tell (which may not be very far) neither has even theoretically connected sexual sensations with bodily contact with others.
At St Mary’s George had a girlfriend, the lovely, high-functioning, non-autistic Emma. She was good for his confidence; he enjoyed dancing with her and being singled out by her, but I believe that was as far as it went. At the Mount, he expressed a faint romantic interest in an autistic girl, but this didn’t amount to more than enjoying being in her general proximity. As for Sam, he’s never proved that he can distinguish between male and female. “What’s Grandfather, Sam?” “A lady.” George might, very occasionally, linger over a picture of a pretty girl in a magazine; Sam would much rather look at a tractor.
It’s been surprisingly easy to teach the boys that there is only one place for their solitary sexual activity – the bedroom. In early adolescence we had a few awkward incidents involving the removal of trousers in public, but only a few. Overall, their sexual behaviour is infinitely easier to mange than their toilet habits – George still leaves it in a mess, Sam still flushes away yogurt pots, candles, rubber ducks, whatever, with expensive and inconvenient consequences. Their sexual aloofness is a measure of the profundity of their “otherness”, but I must say it simplifies matters.
That “otherness”, however well managed, never goes away. I’m so used to it that I forget how odd our home life must look to other people, with locks on many of the doors, piles of magazines in boxes for Sam to rip up, and the television permanently tuned to the CBeebies channel. George complains his foot hurts – I remove his shoe to find, not a sock, but a skiing mitten. Sam strips for his bath – I catch my breath – is that a rare and terrible skin disease? No – he’s drawn all over his legs and torso with felt tips. Making George’s bed, I find his treasures beneath his pillow – a broken CD cover, a label peeled off a jar of Nutella, a postcard from my godmother, the printed out lyrics to Fleetwood Mac’s Man of the World. Have I lost the turkey baster, the nut crackers, the rabbit-shaped jelly mould, any number of Tupperware lids? They’ll be wherever Sam was last seen. A saucepan, left to scorch on the Aga, contains the remains of Sam’s “cooking” – chocolate mousse, curry, and sultanas. The TV remote balanced on top of a door jamb; six spoons lined up to tackle one bowl of cereal; evidence of George’s alternative world view is all over the house.
What do my sons want for their own future? It’s not possible to say. Social workers, health professionals and other concerned parties are, rightly, trained to ask the “service user” about their wishes, to involve them in the consultative process, but with George and Sam, this is a struggle. For the foreseeable future, all decisions about the boys’ needs will have to be made by me.
It’s a big responsibility, and one I only feel qualified to take because I make it my business to understand my sons as well as I can.
