David Boyle

Autism: naughty children and the syndrome that became an epidemic


New Statesman, 6 October 2003

"Don't call me that word!" says a furious six-year-old, sitting between worried parents and NHS psychologists in a drab suburban family centre.

She is in the middle of what is becoming a familiar scene in modern Britain: the ritual of the official diagnosis of Asperger's Syndrome, or mild autism. And it's the word Asperger's that has been whispered between her parents and professionals in her hearing once too often.

There are specialists in this increasingly complex area of paediatrics who believe that, if the child challenges the diagnosis, then it is wrong by definition.

Non-professionals might also wonder why a child who is communicative and intuitive enough to recognise the word at all might ever be autistic, or anything like it.

But in this case, and in so many others now, the diagnosis stood. Maybe not fully-fledged autism, but 'Asperger's' or - as they put it these days - 'autistic spectrum'. Welcome to the new world of autism diagnosis.

'Autism' is a word first coined in 1908 and diagnosed in 1943, describing children who were self-absorbed and unable to interact socially.

It has become particularly complex over the past decade, partly since the work of Hans Asperger in the 1940s was translated into English, and his description of clumsiness in children, linked to the same phenomenon. And partly because autism is fast becoming a hot political issue, linked to a whole range of questions like MMR jabs.

The figures are certainly frightening. There are now half a million people in the UK said to be suffering from autism, up 1,000 per cent among children in ten years.

That's one in 86 primary schoolchildren in England and Wales, and one in 121 in Scotland - enough for a column in the Guardian by an agonised mother and a series of TV documentaries.

You can terrify people with percentages, and in the USA you will find claims on the internet of staggering 62,000 per cent rises in Illinois over the same period, with credulity-testing four figure percentage rises in states like Ohio and Nebraska.

Actually 1992/3 was the first year the figures were collected in the USA, so these are easily open to challenge, and different versions of them are available on the internet too.

What is odd is that you find these figures on campaigning websites, and they are fanning the flames of a global autism panic.

A recent Royal Free Hospital study cast doubt on whether there has been any rise at all, suggesting that the statistics simply represent wider medical recognition of autism.

It was followed quickly by claims by Professor Priscilla Alderson that the rise was about psychologists trying to "make a quick buck", and that symptoms would disappear if children were allowed out of the house a little more.

There is may well be some truth in this, and yet something is going on. And what may be most interesting is what this enthusiasm for diagnosing autism says about child behaviour and our fears about it.

Why is a condition so distressing for parents that, until recently, doctors might delay for years without saying the dreaded word, suddenly become so overwhelmingly 'popular'? Why are parents so keen to have the diagnosis and psychologists and doctors so keen to oblige?

This is a question that has barely filtered out of the arcane world of child psychology, yet it lies behind not just the MMR debate - but also the deployment of scarce educational resources. Education authorities are under pressure to provide for burgeoning armies of the mildly autistic.

But it may also provide a clue to our inability to deal with was once called ordinary naughtiness - or even mild oddness.

None of this implies that MMR is innocent, or that autism isn't immensely distressing. It can tear a family part when their child shuts down and withdraws from its relationships and the world. Previous generations struggled over this mystery malfunction in children, but there is still neither a foolproof solution nor a clear cause.

But an afternoon in a family centre - with professionals fresh from their courses on diagnosing autism, doling out diagnoses to grateful and worried parents - might also make you wonder about the way Blair's Britain loves to label and count the things they fear the most.

"It's trendy," one NHS child psychologist told me. "It's something that a lot of professionals have at the forefront of their minds. You find consultant clinicians are going to conferences in autism. Then if a child doesn't make eye contact with them, they think they're autistic."

Standing up against the enthusiasm of colleagues about diagnosing autism can be a frightening business. It can blight promising careers - especially as the Department for Education and Employment has allocated £25 million to train professionals to diagnose early. Then there's Autism Awareness Week every May: it's sometimes hard to resist the wave.

But there is something else going on as well.

First, the whole idea of Asperger's Syndrome, or 'autistic spectrum disorder', may be one reason for the rising figures. You can't see it under a microscope - Asperger's is just a collection of symptoms - but it makes it very much easier to diagnose autism.

Second, the precious piece of paper with an official diagnosis can unlock a range of extra educational resources - the pre-school home visiting service, one-to-one teaching in a nursery, special language therapy and support for parents, not to mention special support at school.

The Centre for the Economics of Mental Health says the lifetime cost to the public purse is about £2.4 million per child. Even a child with Asperger's will make parents eligible for respite care, plus individual support in school.

And third, parents are often enormously relieved to find that their child isn't outrageously naughty - which might be their fault - but suffers from some kind of syndrome that absolves them of responsibility, and might actually be treatable.

"Autism frames behaviour in a way that is tolerable to parents," says one sceptic, Shropshire NHS therapies director Craig Newnes. And of course, if doctors don't diagnose Asperger's, they have to look at relationships inside the child's family to explain why they're so uncommunicative - and some families avoid that at all costs.

One of the problems with diagnosing autism, since it was first described in the 1930s, is that there used to be 11 tests for it - but to be diagnosed, a child would only have to fulfil five of them. You might get two children with completely different symptoms, both of which were officially autistic.

This is even worse with Asperger's, as you can see from the 1991 official criteria. This is a list of six categories, and all six have to be ticked before an Asperger's diagnosis can be given - but they can be ticked for completely different oddities.

And if you look closely at the list, you might feel we are absolutely surrounded by people having trouble with their autistic spectrums.

'Imposition of routines and interests', for example. Or 'lack of desire to interact with peers'. Or 'clumsiness', which will describe many of us.

'Formal, pedantic language', 'peculiar stiff gaze', or 'absorbing interest more rote than meaning'? It describes most of the current Cabinet, and certainly many psychiatrists.

There is the problem. Modern society demonstrates many of the Asperger's traits - and particularly somehow, the people who rule us - yet we only somehow see them in children.

Or maybe in more distant others. Cambridge psychology professor Simon Baron-Cohen recently published the theory that Einstein and Newton both had Asperger's on the grounds that they were obsessive and didn't like small talk.

The truth is that we are increasingly agonised and confused by 'bad behaviour' - especially in young people. We feel powerless in the face of it, and prefer to label it as a syndrome that might somehow, some time, be susceptible to the same pharmacological fix that we use on ourselves.

The 'discovery' of autism has a parallel in 'attention-deficit disorder' (ADD), which is now said to affect one in ten UK children, with 345,000 prescribed the drug Ritalin - even to children as young as 18 months.

ADD is another collection of related symptoms which - if you wanted to - could apply to most normal children: fidgeting, distractedness, forgetfulness, impulsiveness, 'babbling about nothing'.

Why this explosion of hyperactivity? It probably is related to some extent to food additives, but it is partly also the result of heavy marketing of the disorder by drugs companies. But even more it is the result of agonised parents who prefer to label what once would just have been bad behaviour.

In fact, the worse children behave - and it can be appalling - somehow the more society prefers to label and drug them, rather than face up to causes that might be nearer home.

The result is that four million American schoolchildren are now dosed daily by the school nurse with Ritalin, often on the advice of teachers who want them less argumentative.

"How has it come to pass," asks the Washington writer Mary Eberstadt, "that in fin de siècle America, where every child from pre-school onwards can recite the anti-drug catechism by heart, millions of middle and upper-middle class children are being legitimately drugged with a substance so similar to cocaine that, as one journalist accurately summarised the science, it takes a chemist to know the difference?"

There is a conspiracy theory here: drugs companies increased awareness of depression in the 1980s - which affected a tiny proportion of the UK population a generation ago - as a way of paving the way for drugs like Prozac (the 1970s drug of choice was Valium, for hyper-tension).

They did the same for ADD in the 1990s, with attention-raising seminars and expert papers. Is autism and Asperger's facing the same treatment now? Will the Asperger's drug be unveiled in a few years time, to a ready and enthusiastic market?

When it is, I can only suggest that we don't pay too much attention to the statistics. Because we count what we fear the most as a society, and - when we're really scared - the figures rise.

"Don't call me that word!" says a furious six-year-old, sitting between worried parents and NHS psychologists in a drab suburban family centre.

She is in the middle of what is becoming a familiar scene in modern Britain: the ritual of the official diagnosis of Asperger's Syndrome, or mild autism. And it's the word Asperger's that has been whispered between her parents and professionals in her hearing once too often.

There are specialists in this increasingly complex area of paediatrics who believe that, if the child challenges the diagnosis, then it is wrong by definition.

Non-professionals might also wonder why a child who is communicative and intuitive enough to recognise the word at all might ever be autistic, or anything like it.

But in this case, and in so many others now, the diagnosis stood. Maybe not fully-fledged autism, but 'Asperger's' or - as they put it these days - 'autistic spectrum'. Welcome to the new world of autism diagnosis.

'Autism' is a word first coined in 1908 and diagnosed in 1943, describing children who were self-absorbed and unable to interact socially.

It has become particularly complex over the past decade, partly since the work of Hans Asperger in the 1940s was translated into English, and his description of clumsiness in children, linked to the same phenomenon. And partly because autism is fast becoming a hot political issue, linked to a whole range of questions like MMR jabs.

The figures are certainly frightening. There are now half a million people in the UK said to be suffering from autism, up 1,000 per cent among children in ten years.

That's one in 86 primary schoolchildren in England and Wales, and one in 121 in Scotland - enough for a column in the Guardian by an agonised mother and a series of TV documentaries.

You can terrify people with percentages, and in the USA you will find claims on the internet of staggering 62,000 per cent rises in Illinois over the same period, with credulity-testing four figure percentage rises in states like Ohio and Nebraska.

Actually 1992/3 was the first year the figures were collected in the USA, so these are easily open to challenge, and different versions of them are available on the internet too.

What is odd is that you find these figures on campaigning websites, and they are fanning the flames of a global autism panic.

A recent Royal Free Hospital study cast doubt on whether there has been any rise at all, suggesting that the statistics simply represent wider medical recognition of autism.

It was followed quickly by claims by Professor Priscilla Alderson that the rise was about psychologists trying to "make a quick buck", and that symptoms would disappear if children were allowed out of the house a little more.

There is may well be some truth in this, and yet something is going on. And what may be most interesting is what this enthusiasm for diagnosing autism says about child behaviour and our fears about it.

Why is a condition so distressing for parents that, until recently, doctors might delay for years without saying the dreaded word, suddenly become so overwhelmingly 'popular'? Why are parents so keen to have the diagnosis and psychologists and doctors so keen to oblige?

This is a question that has barely filtered out of the arcane world of child psychology, yet it lies behind not just the MMR debate - but also the deployment of scarce educational resources. Education authorities are under pressure to provide for burgeoning armies of the mildly autistic.

But it may also provide a clue to our inability to deal with was once called ordinary naughtiness - or even mild oddness.

None of this implies that MMR is innocent, or that autism isn't immensely distressing. It can tear a family part when their child shuts down and withdraws from its relationships and the world. Previous generations struggled over this mystery malfunction in children, but there is still neither a foolproof solution nor a clear cause.

But an afternoon in a family centre - with professionals fresh from their courses on diagnosing autism, doling out diagnoses to grateful and worried parents - might also make you wonder about the way Blair's Britain loves to label and count the things they fear the most.

"It's trendy," one NHS child psychologist told me. "It's something that a lot of professionals have at the forefront of their minds. You find consultant clinicians are going to conferences in autism. Then if a child doesn't make eye contact with them, they think they're autistic."

Standing up against the enthusiasm of colleagues about diagnosing autism can be a frightening business. It can blight promising careers - especially as the Department for Education and Employment has allocated £25 million to train professionals to diagnose early. Then there's Autism Awareness Week every May: it's sometimes hard to resist the wave.

But there is something else going on as well.

First, the whole idea of Asperger's Syndrome, or 'autistic spectrum disorder', may be one reason for the rising figures. You can't see it under a microscope - Asperger's is just a collection of symptoms - but it makes it very much easier to diagnose autism.

Second, the precious piece of paper with an official diagnosis can unlock a range of extra educational resources - the pre-school home visiting service, one-to-one teaching in a nursery, special language therapy and support for parents, not to mention special support at school.

The Centre for the Economics of Mental Health says the lifetime cost to the public purse is about £2.4 million per child. Even a child with Asperger's will make parents eligible for respite care, plus individual support in school.

And third, parents are often enormously relieved to find that their child isn't outrageously naughty - which might be their fault - but suffers from some kind of syndrome that absolves them of responsibility, and might actually be treatable.

"Autism frames behaviour in a way that is tolerable to parents," says one sceptic, Shropshire NHS therapies director Craig Newnes. And of course, if doctors don't diagnose Asperger's, they have to look at relationships inside the child's family to explain why they're so uncommunicative - and some families avoid that at all costs.

One of the problems with diagnosing autism, since it was first described in the 1930s, is that there used to be 11 tests for it - but to be diagnosed, a child would only have to fulfil five of them. You might get two children with completely different symptoms, both of which were officially autistic.

This is even worse with Asperger's, as you can see from the 1991 official criteria. This is a list of six categories, and all six have to be ticked before an Asperger's diagnosis can be given - but they can be ticked for completely different oddities.

And if you look closely at the list, you might feel we are absolutely surrounded by people having trouble with their autistic spectrums.

'Imposition of routines and interests', for example. Or 'lack of desire to interact with peers'. Or 'clumsiness', which will describe many of us.

'Formal, pedantic language', 'peculiar stiff gaze', or 'absorbing interest more rote than meaning'? It describes most of the current Cabinet, and certainly many psychiatrists.

There is the problem. Modern society demonstrates many of the Asperger's traits - and particularly somehow, the people who rule us - yet we only somehow see them in children.

Or maybe in more distant others. Cambridge psychology professor Simon Baron-Cohen recently published the theory that Einstein and Newton both had Asperger's on the grounds that they were obsessive and didn't like small talk.

The truth is that we are increasingly agonised and confused by 'bad behaviour' - especially in young people. We feel powerless in the face of it, and prefer to label it as a syndrome that might somehow, some time, be susceptible to the same pharmacological fix that we use on ourselves.

The 'discovery' of autism has a parallel in 'attention-deficit disorder' (ADD), which is now said to affect one in ten UK children, with 345,000 prescribed the drug Ritalin - even to children as young as 18 months.

ADD is another collection of related symptoms which - if you wanted to - could apply to most normal children: fidgeting, distractedness, forgetfulness, impulsiveness, 'babbling about nothing'.

Why this explosion of hyperactivity? It probably is related to some extent to food additives, but it is partly also the result of heavy marketing of the disorder by drugs companies. But even more it is the result of agonised parents who prefer to label what once would just have been bad behaviour.

In fact, the worse children behave - and it can be appalling - somehow the more society prefers to label and drug them, rather than face up to causes that might be nearer home.

The result is that four million American schoolchildren are now dosed daily by the school nurse with Ritalin, often on the advice of teachers who want them less argumentative.

"How has it come to pass," asks the Washington writer Mary Eberstadt, "that in fin de siècle America, where every child from pre-school onwards can recite the anti-drug catechism by heart, millions of middle and upper-middle class children are being legitimately drugged with a substance so similar to cocaine that, as one journalist accurately summarised the science, it takes a chemist to know the difference?"

There is a conspiracy theory here: drugs companies increased awareness of depression in the 1980s - which affected a tiny proportion of the UK population a generation ago - as a way of paving the way for drugs like Prozac (the 1970s drug of choice was Valium, for hyper-tension).

They did the same for ADD in the 1990s, with attention-raising seminars and expert papers. Is autism and Asperger's facing the same treatment now? Will the Asperger's drug be unveiled in a few years time, to a ready and enthusiastic market?

When it is, I can only suggest that we don't pay too much attention to the statistics. Because we count what we fear the most as a society, and - when we're really scared - the figures rise.

 

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title: books by David Boyle
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