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An Unknown Hero



See It My Way
The Guardian, November 23rd, 2002

“Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy. He seems
“Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy. He seems
suspended in this picture. Not swinging, but still and serene.”
Rosie, Stanley’s Mum

Stanley was diagnosed as autistic when he was three. It is as if he is in his own world, which it's hard for others to enter. Rosie Barnes, his mother and a photographer, has tried to break through the barrier and show, in her images, how Stanley thinks and feels.

In February, Stanley was five years' old. "I said to Stanley, 'Shall we sing Happy Birthday?'" says Rosie Barnes, his mother. "And he said, 'No, no, no.' His grandparents were there. They're terribly sympathetic, but they just can't believe someone doesn't want Happy Birthday sung to them. So I said perhaps we could whisper-sing it, as it would be quite nice. He said OK. So we all sung it in whispers, but as soon as we stopped, he shouted, 'Noooooo!', and came over and hit me. I think he wonders why everyone finds it so much fun."

Rosie pauses, and looks towards Stanley. He is watching The Land Before Time VI, clasping the video case. He watches it every single day when he gets back from school, always sitting on the spot on the left-hand side of the sofa, always clasping the case. He is smiling, whooping, repeating lines from the film he knows so well, bouncing up and down on the sofa, happy. Like all parents of young children, Rosie tries to understand her son, and why singing Happy Birthday is so painful for him. "Perhaps it's because it's out of the routine - to suddenly have a day that's special," she says. "And it's charged with emotion. It's just too much for him. He should smile like everybody else - but he just can't."

Rosie, a photographer, has been trying to understand Stanley since he was tiny. In the autumn of 1998, when he was just 18 months' old, she took and exhibited a series of photographs entitled A Boy's Eye View - an attempt to interpret the world through her small son's eyes. She was exploring big themes: scale, reality, emotion. In one photograph, Stanley is sitting on a toy motorbike in a children's playground, staring at a fabulous mural of multicoloured giants swooping over tiny houses, puzzling at what he sees. Rosie wanted to capture that childish sense of confusion, the fumbling attempts to decode his newly inhabited world. She had no idea, in those innocent months, that anything might be wrong.

There is a truth in the tale of the Ugly Duckling
“There is a truth in the tale of the Ugly Duckling. If you are a swan and unrecognised as such, living with a duck family that thinks you are a duck, expects you to behave like a duck, and at times might coerce you to be more like a duck – you have a problem … You will have poor self-esteem and the need to isolate yourself at the same time that you try not to be isolated. Indeed, if things get bad enough, you will eventually decide that further attempts at communication will only bring on more trouble, so you stop trying to communicate.”
Bob Morris, writer and adult with autism

There is a picture of this perfect boy, sitting on his father's shoulders. He is big-eyed, with a pouting ruby mouth. The sky is blue, the future bright. "He was so totally easy to look after, not at all demanding of attention - which I suppose might be significant now," recalls Rosie. "He was very ahead. He could count to 25 and sing Moon River at 19 months. People always said he was amazing. We would take him everywhere and he would never whinge. He never cried to be picked up out of his cot. He didn't cry if he fell over. He was extraordinarily happy and contented."

But as Stanley grew, his remarkable abilities - a source of great pride and joy - seemed stranger and stranger. He just wasn't like other boys his age. "He would explode - as if he were really frightened - about the smallest things, like taking a different route home from school. Then he started doing all this appropriating of lines from stories. We'd gone to the aquarium, and we got back home and were having dinner when he slapped the table and said, 'Thanks everybody for a great day!' We were like - Oh, Stanley's so funny! He comes out with all these hilarious things! Then, a couple of weeks later, we realised that it was a line from a video, but he'd used it perfectly.

"He started doing that a lot. On his second birthday, he got a play mat that had an aerial view of a town. My dad unrolled it and Stanley said, 'Oh, look at the beautiful colours!' in a slightly funny voice. And my dad was - Oh, my grandson! He's so amazing! He's only just two and he's saying that! I realised, about a week later, when I was watching A Bug's Life on video, that the caterpillar says that in a German accent. He was regurgitating the words - but had no idea what he was saying."

Slowly, the bricks of Stanley's disability began to build up. "He loved satsumas. But he wouldn't eat one until he'd put all the pieces perfectly around the edge of his plate, all facing the same way. Then he'd eat them one by one." He was referred to a specialist, who thought that the satsumas were significant; it was a way of maintaining some sort of control, they said. By three and a half, Stanley was diagnosed as autistic. Rosie embarked upon her second set of photographs - A Boy's Eye View II. "These new photographs were still trying to make sense of things," she says. "I wanted to explore feelings of isolation, difficulty with communication, confusion, rigidity and the general inability to fit in with the norm. Documentary-type pictures of autistic people couldn't have done that; they look completely normal. So I used symbolism, to try to show how Stanley thinks.

"On reflection, the poignancy and irony of my first series is overwhelming," says Rosie. "Some of them were clearly referring to autism without my knowing it. Stanley really does live in a very confusing world - much more complex, illogical and, at times, frightening than I can possibly understand. It's me trying to understand what it's like for him."

There is no biological marker for autism, no definitive test. You cannot take a blood sample and have it analysed for autism. The condition is defined by a pattern of behaviour. The diagnosis covers a wide spectrum, from high functioning, also known as Asperger's syndrome, with good language skills and no intellectual impairment, to totally mute and (although not necessarily) severely retarded. Stanley is high functioning. He talks, he's bright, he has one-on-one relationships; he adores his mother.

Because the diagnosis is so fluid, there is no accurate assessment as to how many people in Britain have autism. A recent Medical Research Council (MRC) report stated that one in every 166 children aged under eight is affected. In May this year, however, the National Autistic Society (NAS) revised its previous estimate from one in every 110 children to one in 86, roughly double the prevalence found by the MRC. The NAS found the rate to be three times higher in primary than in secondary schools. Is the higher rate of autism at primary school a result of higher levels of awareness and better diagnosis? Or, the NAS asked, is it an autism epidemic? As the numbers of children with autism increase, parents seek proper explanations - which makes blaming the MMR vaccine so attractive. But, at present, the only established factor is genetic - autism can run in families.

Professor Simon Baron-Cohen, co-director of the Autism Research Centre at Cambridge University, believes that the rise is at least partly due to the broadening of the category. "It's a combination of greater awareness and changing criteria," he says. "There's not necessarily some epidemic happening, and no new cause." There is also no cure - and no prospect of one for many lifetimes, if ever. The only "cure" we can currently offer is understanding and awareness.

Sometimes, that awareness has to be pressed upon us. To a passerby, Stanley's autism is invisible. See this five-year-old refusing to get up from the supermarket floor, and he looks like a regular, badly behaved boy. But Stanley's language, his thought patterns, his method of learning, his priorities, are all different from ours. What Stanley considers fun, important, interesting, relaxing, significant, beautiful, easy, scary, safe, can be at complete odds and often in conflict with the non-autistic.

This gulf has even been codified - people with autism are said to differ from the non-autistic in three main overlapping areas, known as "the triad of impairments": communication (verbal and non-verbal), social understanding (sometimes referred to as "social blindness"), and flexibility.

Although children with high-functioning autism often have an extraordinary vocabulary, they cannot communicate meaningfully. They deliver monologues, sometimes borrowed, and recite unrelated snippets of information in lists. Every word is taken literally, at face value. The art of conversation is a foreign language, as indecipherable as the script on the Rosetta stone.

We often seek to understand this lack of communication through examples. Sometimes, these seem like jokes. "Would you like to get on with your maths now, instead of chatting?" asked the teacher of a child with Asperger's, to which she got the answer, "No." Likewise, "You're so sweet I could eat you up," can appear as a terrifying threat. If a child is told, "Pull your socks up!" he will bend down and pull up his socks.

"I once said, 'Come on, let's hit the road!'" says Rosie, "and Stanley said, 'Oh no, Mummy. We can't do that. That's not very nice.'"

Communicating without words is just as challenging. When relaxed and happy, Stanley likes twisting back his arms in ways that we'd consider painful and odd. Expressing emotions is equally contorted; he obviously has feelings, he just isn't sure how they should be displayed. "Stanley gets things emotionally a bit mixed up," says Rosie. "Other children are terrified of the dog in Toy Story, but Stanley laughs hysterically at the gnashing teeth. I think he can't quite understand what he's supposed to be doing, so he just laughs." Clare Sainsbury, a young adult with Asperger's and author of Martian In The Playground (12, Lucky Duck Publishing), describes learning her "social smile" by practising in the mirror. Eye contact is avoided, as if it hurt.

Autistics are blind to our social rules. They often describe themselves as aliens on planet earth, and regard Star Trek's Mr Spock as a kindred spirit, perpetually baffled by the illogical behaviour of human beings. "We do not intend to be disrespectful," explains Sainsbury, "but it does not occur to us that we are supposed to treat someone in a different, special way, just because they are a teacher. So a child with Asperger's may not understand that they are supposed to obey the teacher without discussion, let alone that they are not allowed to correct the teacher's errors, even though the teacher corrects theirs all the time."

'It feels like I'm trapped in a world where everyone hs their backs to me.' Nita Jackson, writer and adult with Aspergers.
'It feels like I'm trapped in a world where everyone hs their backs to me.' Nita Jackson, writer and adult with Aspergers.

For autistics, there's no such thing as another's mind. Other people's emotions are not unimportant - they do not exist, so the need to respect them is absent. Feelings can be hurt without intention or guilt. There is no empathy. And with no social or emotional antennae, there is no desire to conform, to fit in with their peers, no gender stereotyping and, refreshingly, no fashion sense. People with autism are notoriously bad dressers, often preferring to wear nothing at all - it might never occur to them that someone would feel offended by seeing them without any clothes on.

Being flexible, just muddling along and fitting in, is impossible. Surprises, such as birthday parties, cause stress. Inferring from one situation to another is extremely difficult. A child with autism may be able to measure a piece of paper with a ruler, but may not be able to work out how to measure a piece of wood in the same way. Learning often becomes an impressive accumulation of a string of facts. In The Art Of Travel, Alain de Botton describes wandering in a foreign land: "We irritate locals because we stand on traffic islands and in narrow streets and admire what they take to be strange and small details. We risk getting run over because we are intrigued by the roof of a government building or an inscription on a wall. We find a supermarket or hairdresser's unusually fascinating. We dwell at length on the layout of a menu... " He could be describing the person with autism in our society. While the experience remains impenetrable, we often recognise a little of it within ourselves.

Stanley is lucky to have been diagnosed autistic so young. The average age at which someone is diagnosed with high-functioning autism is 11. By that time, they've been all the way through primary education, often unhappily and inevitably misunderstood. Many children with autism, like Stanley, are academically able, so school should be the one place where they thrive. But they rarely do, continually hampered by the effort of having to interact with other children. "The emphasis on socialisation as the main purpose of school is obviously going to have very different implications for those of us whose primary disability is a social one," says Sainsbury.

Rosie, Victor (Stanley's three-year-old brother) and I went to pick Stanley up from school. He goes to a modern local primary, a beautiful, airy building. He's in reception, and has his own carpet tile on which he always sits for story time. He has a support assistant for two hours a day, and the school, although mainstream, has experience of children with autism. As soon as he sees Rosie, he starts talking, very fast. "Mummy. Kangaroos eat apples. And Mummy. Bears eat eggs and honey. And Mummy. Elephants eat crisps. Cows eat doughnuts. Mummy. Mummy ." He is desperate to impart this information to his parent, as if something terribly important depended upon it.

"What do horses eat?" asks Rosie, calmly.

After a while, "I don't know," says Stanley.

Three-year-old Victor pipes up: "Grass. Horses eat grass."

Rosie continues to try to talk to Stanley. "Does that come from a book?" she asks.

"And Mummy. Nobody cares like a bear. Mummy. Nobody cares like a bear." We laugh, except Victor, who's heard it all before. But it's an uncomfortable laugh. For we may not be laughing with Stanley, but at him.

Already, at five, Stanley makes huge attempts to pretend to be normal. But it's almost unimaginable what a challenge it must be for him to learn to act in a way that we deem acceptable without ever beginning to understand why. "It wouldn't occur to him to offer someone else a biscuit from a packet," says Rosie. "I might ask him to do it, and he would, but he'd take one for himself first. He's quite polite, he says please and thank you. But every now and then he'll add on something like, 'Oh, thank you, that's very kind of you. Thank you so much.' He'll totally overembellish it. It's a lot of borrowed stuff. It's not really him."

"What is really him?" I ask.

"I don't know," says Rosie.

As soon as we arrive home, Stanley begs to watch The Land Before Time VI. "If exactly what he wants doesn't happen, he gets very agitated," says Rosie. "He has to watch the video right from the beginning. He even recognises all the little bits of interference before the copyright. If Victor suggests forwarding it to the film, Stanley will go, 'Nooooo, turn it back, turn it back' and immediately start crying, rolling around, and hit me and hit Victor. There's probably so much that's confusing, that he doesn't understand, that he has to get some comfort from a framework. That's how I imagine it."

Stanley jumps up from the sofa and starts running furiously from one side of the room to the other. Then he settles back down again, grasping the video case. He provides a continual commentary. "Watch Mummy. Listen Mummy. Watch Mummy. Listen Mummy." Sometimes, he makes strange, breathy, grunting sounds. He's like a mini megalomaniac Hollywood director, ordering us to look here, see there. If we don't pay attention, turn our gaze where he has directed, he gets cross, he shouts louder. "Something's in the water. Mummy - look!" He will tell you things - many, detailed, extraneous things - but won't tolerate being interrupted, won't answer a simple question.

"So many people say, 'Oh, he's all right. He's only mildly affected'," says Rosie. "He is. But the three things that are problems for him are really important - communication, social interaction and flexibility. Those things are the key to getting a job, having a relationship, being able just to cope with life."

According to statistics, Stanley's future promises little. Less than 10% of adults with autism live independently. Only 6% hold down full-time jobs. One-third suffer mental ill health, a figure that rises the later the diagnosis.

Yet however much adults with autism embrace these odds, they defy being defined as tragic. David Gardner is 27 and has Asperger's. He chats incessantly, has a first-class Oxford degree in mathematics, and is good-looking in a boffin kind of way, with thin, straight hair that floats up from the side of his head. And he doesn't have a high opinion of non-autistics like myself; he doesn't trust our intentions. "Don't talk to us about a cure. We don't want to be cured!" he declares. "It's offensive. It's like walking up to a homosexual and saying, 'We've got a cure for you.'" He speaks sing-songily, with the emphasis in slightly the wrong place, as if he'd learned English as a foreign language. As we greet, his arms are bent awkwardly up in front of him, like a rabbit on its hind legs.

When David was diagnosed as autistic last year, he was very glad. "You wouldn't believe what a difference it's made to my peace of mind, just knowing. Before, it was something I had to deal with every day, but I didn't know what it was. I'd tried to make friends, but I ended up getting bullied or rejected or ostracised. I've been told that I have problems communicating with people. But that isn't true when I get to know other people with Asperger's."

When David says "get to know", he means in an internet chat room. When he says he has "spoken to someone", he means exchanged emails. "Meeting someone on the internet counts as meeting," he explains. "I feel I can get to know people well enough that way. Meeting in real life is nice when it happens, but it can be a bit much."

“Stanley looks like any other child, but he’s not. There’s a great amount of rigidity in his life and inflexibility in his thinking... nice, soft circular shapes flowing in the wind, but of course it’s as stiff as a board.” Rosie, Stanley’s Mum
“Stanley looks like any other child, but he’s not. There’s a great amount of rigidity in his life and inflexibility in his thinking... nice, soft circular shapes flowing in the wind, but of course it’s as stiff as a board.” Rosie, Stanley’s Mum

David regards autism not as a disability but as an asset. "It is not a bad thing, it is not a disorder. It is not something that should be corrected," he argues. For him, autism is just a different way of looking at the world - a culture. Things we take as natural human characteristics are, according to David, little more than hollow convention and ritual. "Smiling and not smiling is not really anything to do with happiness. Don't make that assumption," he says.

David almost pities me with my mundane life, with my inability to be enthused by small things. His world is far more fascinating. "It's like being locked in a very detailed art gallery. Wow - it's too much. Things do look very, very interesting. Perhaps it's fairly easy for the average person like you to ignore all the details in this room and concentrate on looking at me. For me, this whole room is fascinating. All I have to do is look at the ceiling and - wow, look at that!"

I look at it. The sitting room ceiling is just a ceiling, Artexed in large, regular swirls. It probably said "Magnolia" on the paint tin.

"You can join the dots and make quite interesting patterns," says David, still looking up. "Oh wow. You could sit here all day, couldn't you?"

"No," I say. "You could. I couldn't." But he carries on, as if he hasn't heard.

David lives in two rooms upstairs in his parents' house, and rarely goes out. One room is brightly coloured, the other decorated almost entirely in silver. There's a disembowelled computer on the floor, which he is rebuilding. Sheets of fluorescent paper, covered with mathematical calculations, and books on theoretical computer science are scattered on his desk. "I read them much as anyone else would read fiction, to escape," he says. "I like ornaments, shiny things, colourful things... " There's a collection of glass pebbles, all neatly lined up in a row. There are hundreds of candles. He has spray-painted the lampshades silver. There must be 20 lamps altogether. "All I need to do is get Laurence Llewelyn-Bowen round to finish it all off," he jokes, and we laugh together. That's not supposed to happen - people with autism are presumed to lack the social skills to crack a joke.

It's hard to grow fond of someone with autism. Someone who doesn't automatically throw their arm over your shoulder when you cry, but instead looks at you quizzically, trying to work out what's going on. Someone who doesn't see anything wrong with letting you down. David's father, Les, a retired engineer, drives me back to the station. "It's all on their own terms," he says in the car. He tells me how David had agreed to play golf with his father and brother last Saturday, but at the last minute called off. His father was upset, his brother was upset. Why did he do something like that, asks Les, genuinely perplexed.

A refusal to join in often meets with disapproval, even though it harms no one. But should we care if someone doesn't want to come out to play? "We don't all have to be social types," says Baron-Cohen. "There are tasks that require you to be solitary, such as cracking a code during wartime, locking yourself away for months. Being diplomatic and polite might just be a distraction. Yet still you're making a great contribution to the country."

Baron-Cohen argues that, rather than seeing autism as a problem, a deficiency or impairment, it could be interpreted as a "different cognitive style". "People with autism simply process information differently," he says. "Rather than be judgmental about it, we should recognise it as different. Sometimes this could be a problem, but it could be a strength. In the social world, there is no great benefit to such a precise eye for detail. But in maths, computing, cataloguing, music, linguistics, craft, engineering or science, such an eye for detail can lead to success rather than disability."

There are other areas of autistic experience that could be given new, positive interpretations. What's so wrong, for example, with collecting things? If we redefine an autistic's obsessions as "special interests", they don't sound so bad, after all. David remembers a book on circuitry being taken away from him as a child. Although he was solving Rubik cube at seven, his very focused abilities were not encouraged. "I should have been talking about Narnia, shouldn't I?" he says. "I don't care much for Narnia."

Why should a fascination with facts be met with disapproval? "If you have a child with Asperger's in your class, should you force them to go out in the playground at break time?" says Baron-Cohen. "Or do you let them stay inside and read an encyclopaedia? What's wrong with that?"

We, who are intuitively embedded in the social world, cannot see the social rules by which we abide. They come so naturally to us that we couldn't write them down if asked. And if even we cannot see - and therefore explain - these rules, how can we expect those with social blindness to be able to abide by them?

Nevertheless, people with autism do try; they have no choice but to attempt to be normal. "You get to learn what's regarded as mental and what isn't," says David. "I can manage a certain amount of conformity, but it's too stressful to do it all the time. I will rock backwards and forwards a lot, which can be a bit odd-looking in a workplace. I may, after a while, just not be able to sit still for any longer, and leap up and run around and leave the room."

How could we make becoming an adult with autism easier for Stanley? Can we learn to accept him as the clever, inventive, self-centred person that he is? Why can't we let Stanley be Stanley - playing alone if he wants to, collecting things, obsessing on details, enjoying odd body movements, cautious of change. "It's not just about autistics having difficulties making relationships with non-autistics," says David. "It's also the other way around. It's not just us who has the problem, it's you, too. The problem is a shared one."

But it's not like building ramps for wheelchairs; it's not easy to point to what should be done. Rosie seeks acceptance, but recognises that there are limits to how much we can accommodate her son. "I can't go to another child's birthday party and say, 'Oh, sorry, you can't sing Happy Birthday very loudly because Stanley doesn't like it.' It happened recently. He just sat there, then at the end he pinched me so hard. It was like some small bit of torture for him."

Stanley is just starting out on a lifelong struggle to understand us, a struggle he will never fully win. We could at least meet him halfway; we, us non-autistic adults, could try to understand Stanley

Rosie Barnes has produced a leaflet with some of her pictures. These are available from

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