What woud it be like to be autistic? Autistic people can seem like closed books: obsessive, solipsistic, unreadable. It is easy to be misled by romantic myths and misinformation about them. We have all heard of 'idiots savants' - people with low IQs but outstanding gifts for music, writing, drawing, calculating - and cinema capitalises on such talents. In Rain Man, Dustin Hoffman played an autistic man with a phenomenal way with figures; in Shine, Geoffrey Rush was the virtuoso pianist David Helfgott.

Such people exist - but most autistic people are not like this at all. Nor is beauty a defining quality - autistic people are as motley in appearance as the rest of us. As for intelligence, the autistic spectrum covers a vast range of IQ, from sub-normal to way above average.

We need to get the picture straight, because autism is on the rise. Even cautious researchers have admitted we are experiencing an 'autism epidemic'. Some say that autism affects one in 1,000 people. Others put the figure as high as one in 110. One Californian study estimated that cases had risen by 30 per cent within a single year. Another study, in the West Midlands, calculated a yearly increase of 18 per cent in classic autism and a 55 per cent rise in cases at the'high functioning' end of the spectrum. And autism seems to be rising particularly steeply in Ireland. But no one knows why and all the figures have to be taken with a large pinch of salt - not least because there is no national register for autistic people, no comparative data from the past.

This 'rise' is reflected in the press. The words 'Asperger's syndrome' are suddenly everywhere. There has been a rash (if that's the word) of articles debating the possible link between autism and the MMR vaccine. Parents are far more forthcoming too: Nick Hornby admitted recently that having an eight-year-old son with autism - even though he and his ex-wife could not be more devoted to Danny - contributed to the break-up of his marriage. Charlotte Moore has written movingly about the peculiar challenges of bringing up two autistic sons.

What autistic people share is a difficulty with communication. Some cannot speak at all, others do not know how to use the words they possess. They find making friends hard. Most do not form intimate relationships. Many will be loners all their lives. If autistic people communicate unconventionally - or not at all - how are we to unriddle their psyches?

Here is Les Murray, the Australian poet, attempting it - in a description of his autistic son:

He knows the map of Earth's fertile soils, and can draw it freehand.
He can only lie in a panicked shout SorrySorryIdidn'tdoit! warding off conflict with others and himself.
When he ran away constantly it was to the greengrocers to worship stacked fruit.
His favourite country was the Ukraine: it is nearly all deep fertile soil.
Giggling, he climbed all over the dim Freudian psychiatrist who told us how autism resulted from 'refrigerator' parents.

Murray's portrait of his fruit-worshipping boy (who would not allow his parents to use the word 'autistic' in his hearing, but could not explain why it offended him) describes autism's intriguing surface but cannot tell us what it is like to be autistic. It was only when I came across a handful of books by autistic authors - Donna Williams, Jessy Park, Temple Grandin and Clare Sainsbury (who has Asperger's syndrome) - that I began to see what autism might be like from the inside.

Their books read like reports from another country. The writers (all women - although autism affects four times as many men) refer directly to the feeling of coming from another planet and finding themselves marooned in our world. Their titles bear witness to alienation: A Martian in the Playground, Pretending To Be Normal, Nobody Nowhere. Temple Grandin in Thinking in Pictures explains the sense of being foreign exactly: 'Words are like a second language to me.'

As I read on, something vertiginous happened: I felt as if the world was turning inside out; I got a glimpse of 'normal' people from an autistic point of view. I could see how strange we must seem: unfocused, loud, relentlessly gregarious, operating by illogical rules. The closed book of autism was starting to open.

I could even latch on to the occasional beauty of the autistic vision, the ability of some autistic people to pour the self into an object, to see as William Blake's (autistic) poem would have it 'a world in a grain of sand'. I could imagine losing myself in the scrutiny of an object - a wild flower or even (at a pinch) a fire extinguisher. Autistic people often have unusual interests, they tend to seem more at home with things than with people.

Autism was identified and named in 1943 by Leo Kanner. He had the damaging - now discredited - theory that autistic children were the progeny of cold, inadequate 'refrigerator' parents (see Murray's poem). Autism was also inaccurately associated with high parental achievement, whereas in fact it occurs at all socio-economic levels and in all ethnic backgrounds.

Autism has always attracted speculation. We know that it is a developmental disorder of neurological origin. There is strong evidence that it is genetic: multimillion-pound research projects all over the world are engaged in the search for 'susceptibility' genes. In the next few years, there may be some answers. At the moment, however, almost everything about autism is contested. No one knows what causes it. It may be caused by conditions that affect brain development before, during or just after birth. It may be linked to environmental factors.

The 'autistic spectrum' ranges from the severely impaired (who will need special care throughout life) to those with above-average IQs and Asperger's syndrome or 'high-functioning' autism. It also includes - tagged on to the end of the list - the cumbersomely named PDDNOS: 'Pervasive developmental disorders not otherwise specified'.

Asperger's Syndrome is the newcomer. It was first described by Hans Asperger in 1944 but his paper was neglected until the late Seventies and early Eighties. It was not until the mid-Nineties that Asperger's syndrome existed as a clinical diagnosis. Many people managed (or failed) to soldier on through life undiagnosed. Some adults are discovering only now - with profound relief - that there is a name for their condition.

It is thought that some maths and physics professors, once thought of as anti-social cranks, may actually have been suffering from Asperger's. Newton, Wittgenstein, Bill Gates are all suspects. So is Einstein (although he is also described as dyslexic and dyspraxic, a figurehead of developmental disorders).

Asperger's defining characteristics are odd but precise. To qualify you must recognise all of the following 10 points (the key is taken from the Cambridge Lifespan Asperger Syndrome Service):

I find social situations confusing.
I find it hard to make small talk.
I did not enjoy imaginative story-writing at school.
I am good at picking up details and facts.
I find it hard to work out what other people are thinking and feeling.
I can focus on certain things for very long periods.
People often say I was rude even when this was not intended.
I have unusually strong, narrow interests.
I do certain things in an inflexible, repetitive way.
I have always had difficulty making friends.

Asperger's syndrome may be partly responsible for the apparent rise in autism. Eric Fombonne is a reader at the Institute of Psychiatry and a consultant child psychiatrist at the Maudsley hospital, who has been involved in studies of the rise in autism. He is cautious, rigorous, scientific - chary of anecdotal evidence. He suggests that it is a 'major possibility' that it is partly because 'we have enlarged the concept of autism' that it seems to be on the increase. In addition, he suggests that the 'decreasing age at which a diagnosis is made' may boost the figures. Some parents and teachers I spoke to resist this view but until there is more research, the jury will have to stay out.

Fombonne has also been one of the leading researchers into the link between the MMR vaccine and autism. He is dismissive of the theory that it is the mercury content in injections that may be the culprit: 'The consequences of mercury poisoning have been studied and autism is not on the list of toxic effects.' Research has not found any causal link between autism and the MMR vaccine, although it has not ruled out the possibility that it may trigger latent autism in a tiny minority of children.

He is adamant that the MMR/autism theory has been a dangerous (and expensive) false alarm. He feels 'very, very strongly' that the consequences of the research carried out by Andrew Wakefield at the Royal Free Hospital are 'dreadful'. (And new research from another team at the Royal Free, published this week, discredits Wakefield's work). He explains that we are now in a dangerous situation because the level of babies receiving the MMR vaccine has dropped from 92 per cent to 88 per cent (last year) - a level below which the country cannot afford to fall. 'There is a risk of epidemics,' he says - and measles is a killer. 'In Ireland last year, two children died; in the Netherlands three died.'

Sometimes the need that parents have for answers is at odds with scientific inquiry, he suggests. 'They feel desperate and unsupported and will plug into any crusade.'

In one sense, he is right. There is no shortage of crusades for the parents of autistic children. But perhaps the most urgent of these is schooling. The rise of autism has not been matched by a rise in special schools for autistic children. It is estimated that there are 26,000 children with autism in the country and only 4,500 special school places.

Last week I went to visit Radlett Lodge, in Hertfordshire, one of six National Autistic Society schools. It takes 49 children (with residential accommodation for 18). The fees are met by the local authorities but there are far more applications than places.

Visiting Radlett Lodge is an extraordinary education in communicating without language. It would be nice to think of it as a model for the future. But at present, according to the National Autistic Society, there is nothing as firm as a plan, only under-funded hopes.

Radlett Lodge is to be found behind a high fence. Security is important (some of the children have no sense of danger). But once through the electronic gates, you see mild modern buildings surrounded by pots of bright flowers: purple and white. Most pupils are at the severe end of the autistic spectrum. There are only six girls in attendance.

Inside, I was struck by the light, calm, organised atmosphere. Organisation is one of the keys to working with autistic children. They depend on the security of routine. The headteacher, Lynda Tucker, is neat and composed but laughs easily. She remembers first coming to teach at the school, 12 years ago, and being overwhelmed: 'I didn't understand. I had never come across anything like it. I was staggered by the unusual behaviours - I felt very de-skilled. I thought I had made a terrible mistake.' For the first week, she would go home every night and cry.

Teachers of autistic children need, she says now, to be able to 'think laterally' - and have a sense of humour. Before any child joins Radlett Lodge, a 'baseline assessment' is drawn up of strengths and weaknesses, challenging behaviour, peculiar interests. A child might have 'a particular aversion to a noise or a smell or to scratchy jumpers. One child had a phobia about pictures of goldfish.'

A teacher has to be able to puzzle out what is disturbing a child - when the child cannot explain. Tucker tells the story of a boy who was hysterical in the bathroom. No one could imagine what was wrong. Eventually, his teacher guessed he was grieved because each day his bar of soap was getting smaller. Working with pictures, she was able to show him why this was so.

Teachers also have to be braced for 'challenging behaviour'. Some children kick or pinch for attention. Staff occasionally wear protective sleeves - in order not to reward such behaviour with a reaction.

Tucker thinks it vital for teachers to work with the children's obsessions wherever possible. One boy is besotted with monsters; he eats Monster Munch at break and has written a saga about monsters. This is a breakthrough, for he used to scream and kick rather than write. It is only when he converts his obsession into trying to be a monster that his teachers intervene.

Some obsessions are almost too useful to be true. One child (who had struggled with writing) became fixated by the alphabet and one day out of the blue suddenly composed a sentence: 'The snow is falling on the cedar trees...'

Other obsessions have to be stubbed out. I met a boy in the corridor with a brightly inquiring face. 'My name is Aden,' he said. 'Do you smoke?' He asked the headteacher the same question. I was pleased to reply in the negative (I later learnt that, for Aden, this was the wrong answer) but I was surprised when the adult with him cut the conversation short. 'I think we have heard this before,' he said. Aden was like a stuck record, I realised, who needed to be moved on. Tucker explained the boy must learn 'clear rules about social interaction'.

Visiting a school for autistic children is delicate - there are children who might be disturbed by a new face. We watched the children from a respectful distance. The striking thing about a class of autistic children is the lack of communication between them. The atmosphere is not peaceful exactly - some children may be rocking slightly, others making noises. But it is the relative lack of words that is so striking. Instead there are visual symbols everywhere. Sometimes, instead of speaking, a teacher might even sing to catch the class's attention or to ease a difficult transition between one activity and another.

In one classroom, the children were asked to close their eyes while each in turn underwent a transformation with the help of a magnificent pink wig. 'David is different!' one of the teachers exclaimed. The experiment was repeated with nerd glasses, a jaunty hat, a black mask.The idea was to encourage observant interaction. The teachers laughed; one child began a smile, the others appeared not to react.

Gabrielle Close is an inspiring teacher who speaks with the enthusiasm of a convert: 'Remember, language is sometimes the barrier, it puts up a fence.' She said it was a mistake to think that children who could speak were necessarily more able. 'Language can also be a false friend. The danger is that you over-estimate a child's comprehension.'

Lynda Tucker wound up the visit by explaining the 'Spell' method of teaching autistic children.

S is for structure. The environment needs to be structured.
P is for positive. 'Autistic children experience a lot of failure. We have high expectations of our pupils, when they succeed it is important that we reward their efforts.'
E is for empathy. 'In some very, very small way this is trying to appreciate what it must be like to be autistic - in particular the high levels of anxiety.'
L is for low arousal. Many autistic children - because of their sensory makeup - may not like noise ('a classic autism pose is fingers in ears). But low arousal 'doesn't mean boring'.
L is also for links with parents, because consistency matters and: 'We can't manage without them.'

Most autistic adults will never have had the benefit of a school such as Radlett. Autistic children used to be put into institutions, left to languish on wards. No one knew what to do with them. There is a much greater awareness now, but it is still true that autistic adults face an uncertain future. According to the most recent report, less than six per cent of autistic adults are in work. And to make a depressing picture worse, a recent White Paper on learning difficulties has ruled that those with an IQ above 70 (which includes those with high functioning autism or Asperger's syndrome) may be ineligible for local authority support.

Andrew is 40 and severely autistic. He lives in one of six residential homes set up by the Hoffmann de Visme Foundation for autistic adults in north London. The foundation also runs a day centre and a service for adults with Asperger's. It is pledged to the idea that, where possible, life should be made enjoyable for autistic people.

The plan is to sit in on Andrew's art lesson; he is about to make a mosaic in stained glass. I am a little nervous about meeting him. His teacher, Mary Pierce, has warned me that he is unpredictable and occasionally will shout or bang his head in frustration; once he broke a window in the community centre where the art class was held. She also alerts me to the possibility that if he likes me he may kiss me on the top of my head.

Andrew comes in. He is shortish and inscrutable with light brown hair. He cannot speak but drums and claps to some rhythm of his own. Mary, a cheerful, motherly figure, has a vial of lavender with her because Andrew likes the scent. He loves music - and it is playing in the room. Mary dabs lavender on his wrists and forehead (an aromatherapeutic baptism) and he kisses her head often and approvingly. It is a good day. Occasionally, he gives a cry that sounds wounded, indignant. At one point, he pours a cup of water onto the carpet in a matter-of-fact way, as though it needed a drink.

Mary encourages him to sit down, which is quite a feat - he prefers to roam and pace. But he seems to enjoy making the mosaic, whenever his mind alights on it. Mary does the glueing; he arranges the pieces. He likes to look at himself in the mirrored glass. It has a dolphin cavorting at its centre and will be exhibited with mosaics by other autistic adults in Edinburgh (at the Engine Shed café in St Leonard's Lane from 6 August to 2 September ).

When Andrew first started art classes, he would not co-operate at all. 'It was a new thing,' Mary remembers, 'he didn't want to know.' He would take off all his clothes and run outside and make himself sick. Now he peers into the air, his eyes arrested by the light switches, momentarily even more interesting to him than the glass.

Andrew lost his place at a day centre after a road accident that undermined his trust in people. But his bad luck had one good result. He now receives individual care. Steve, Andrew's carer, describes him as 'one of the lucky ones'. Andrew understands commands and loves to hear people use his name. He is drawn to stones and water. He licks people he likes. The rule is - according to Steve - 'Don't assume anything'.

Travelling with Andrew on the tube can be 'tricky', because he sometimes behaves in an anti-social way. Recently, he has taken to shouting from the bottom of his throat every 10 seconds. One day he kept this up for five hours. Steve and Andrew sat in Regent's Park together until he stopped.

Steve likes his work. He says he appreciates autistic people because they 'have no choice but to be strong individuals'.

I watch Andrew's hand hover and seek out the last space in the mosaic, filling it with a piece of shining glass.

I am left with the sense that Andrew, unlike so many others, is not one of the forgotten. I am bowled over by the people I've met - like Mary and Steve - who have the patience, imagination and stamina to work with - and for - autistic people. So many of them are taking remarkable imaginative leaps, trying to learn to communicate without language, trying to make something out of silence.

But however marvellous they may be, they cannot stand in the way of the frightening truth that if there is an epidemic in this country, no one knows what to do about it. We are in a state of unreadiness. It is frightening to report that whenever I asked: 'What is to be done?' 'What plans are there for new schools?' 'How does the the Government plan to extend its provision for autistic people?' I drew a blank. And a blank is the last thing autistic people need.

Some of the names in this article have been changed.

Living with an autistic child

Hester is a middle-class professional. Her son, Archie, has Asperger's syndrome.

Hester remembers the moment she realised something must be wrong with Archie. She had stubbed her toe and was doubled up on the floor, weeping. Archie (who was four) responded by telling his mother in a rapt way: 'Elephants is grey; elephants is grey.' The elephant obsession had been a feature of his life ever since he was tiny. But he was Hester's first child and although she knew he was 'tricky' she had no way of judging his behaviour or measuring his passion, beyond noting that it was all-consuming.

Children with Asperger's syndrome are usually able to speak but tend to use language 'inappropriately'. They talk at you rather than with you, are sometimes pedantic and may seem like little savants in an odd or one-sided way. They find other people hard to read. When they look at a face, the expression on it may be indecipherable. And they would prefer not to have to look at all (direct eye contact is difficult for them).

Hester remembers the rude shock of discovering - along with Archie's diagnosis - that the NHS doesn't provide any treatment for autism or Asperger's. 'You get a social worker but no therapy.' She and her husband decided to embark on the Lovaas programme of behavioural therapy. This involves painstaking and intensive one-to-one teaching, using the 'building blocks of conversation' and has been standard procedure in Norway for the past 20 to 30 years. Hester describes it as 'almost magical therapy'. Nick Hornby and his partner, Virginia Bovell, would probably agree. Bovell founded the TreeHouse school, which follows the Lovaas method.

At the beginning, Hester admits, it was gruelling. 'It was like having the builders in. It is very, very structured. It seems frightful - regimented, robotic, full of special language.' She gives an example in a false, sing-song voice of a drill: 'I like apples. Do you like apples?' Hester and her husband were monitored by a 'bullying supervisor' and an egg timer. There were crisps and Smarties as rewards as Archie achieved each new goal. He was also allowed limited periods talking about his new obsessions: fossils, bugs and death.

The Lovaas programme is a huge commitment. Hester and her husband spend £12,000 a year on therapy. The council supplies a further £10,000. (Grants vary widely from one local authority to another.) Archie has made 'massive progress'. Without these learnt social skills, he might be unemployable later in life - and friendless forever.

Bob Noble is chairman of the National Autistic Society. He has five children. His second son, Harry, is 15. He has no language.

'We live our lives on a permanent guilt trip,' Bob says, disarmingly. The guilt is not just about Harry. 'When you have one autistic child, the whole family becomes disabled.' Harry attends a residential school but spends three weekends in four at home. He is now as tall as his Dad and his 5ft 10in provide a 'physical challenge'. Not that Harry - unlike many autistic children - is violent. His current obsession is shoe-laces. It is a commonplace in the Noble household to find your shoes relieved of their laces.

When the family is invited out, they debate whether or not Harry should come. When they take him 'we usually regret it... it is stressful'. When they don't, they feel his absence keenly.

The big worry is about Harry's future. 'At 19, Harry legally becomes the responsibility of social security.' This applies to all 'looked-after' autistic people. If your child has spent even one night in residential care, social security have the casting vote about what happens in the future.

Bob and his wife, Rosie, are already looking for residential care for Harry after he leaves school - but such places are few and far between. Autistic adults often end up staying at home, which puts a tremendous strain on families.

'Another fear is of having your child sectioned if he becomes violent.' Bob Noble hopes the Human Rights Act will have 'a huge impact on Harry and on us'. Harry will always have the mental age of a three-year-old - but 'he will have rights'.

In the meantime the biggest challenge is filling Harry's time. 'He does not play, he won't watch telly. He likes to sit on a swing in the garden for hours - until it gets dark.'

Further information

Useful addresses
The National Autistic Society 020 7833 2299; helpline: 0870 600 8585; www.nas.org.uk
The Online Asperger Syndrome Information and Support site (OASIS): www.udel.edu/bkirby/asperger/index.html
The Autism Picture Page at http://autism.simplenet.com/

Donations can be made to Hoffmann de Visme Foundation, Unit B, Lynton Road, Crouch End, London N8 8SL (020 8342 7310)

Further reading

Nobody Nowhere by Donna Williams (Jessica Kingsley, 020 7833 2307)

Martian in the Playground by Clare Sainsbury (Lucky Duck, 020 7973 2881)

Beyond the Silence by Tito Rajarshi Mukhopadhyay (National Autistic Society)

Thinking in Pictures by Temple Grandin (Vintage)

Pretending To Be Normal by Liane Holliday Willey (Jessica Kinglsey)

Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood (Jessica Kingsley)