Must read: What's wrong with being autistic?

In an acclaimed book, Charlotte Moore charted the demands of life with two autistic sons. But how much tougher is it now George and Sam are adults? Elizabeth Grice reportsThe quiet old house begins to tremble from some distant commotion. Thumpings, bangings and a deep, vibrating moan are coming from another room and can mean only one thing. Charlotte Moore begins to clear away all breakable items in the kitchen with practised efficiency, like a stage hand changing a set. She swiftly replaces our ceramic lunch plates and glasses with a single place setting: a melamine plate of biscuits and a plastic beaker of orange juice. "Sam's back," she announces.Her 20-year-old autistic son seems not best pleased to find a stranger invading his territory. He pulls his T-shirt over his nose, rocks in his chair and produces something between a loud humming of disapproval and a warning growl. He is a fine-looking young man with dark, chiselled features but his arms are covered in little wounds and his hands are red and gnawed. We continue to talk while he decides whether it is safe to emerge from the T-shirt to attack the biscuits. At intervals, he will jump up and stomp around for no particular reason - although his sudden investigation of the scullery, where someone has inadvertently left a bucket of household cleaning stuffs, clearly has a purpose. Charlotte darts over to lock them away, using a bunch of keys she keeps at all times about her person. Sam likes nothing more than to empty unguarded liquids down the sink. He also loves the sound of breaking glass, especially if he is doing the breaking.There are locks on many doors; piles of magazines in boxes for Sam to rip up. A shredded, unread copy of the current Spectator shows what happens when Sam gets there first.And yet this is a good phase; a settled phase. Sam is no longer unmanageable. He has a personal assistant who takes him out for long country walks, even into cafes and on trains; he co-operates with a music therapist and a speech therapist."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."