Wednesday, 14 January 2009

The autistic society

We seem to be in the middle of a media obsession with autism. The Guardian is particularly fond of the subject, filling CIF with columns about the condition - specifically, regarding the possibility of testing for it prenatally - some of which are written by people diagnosed as being "on the autistic spectrum". But it's not just the Guardian. While it, and other British media outlets, report research at Cambridge under the renowned professor Simon Baron-Cohen (Borat's cousin), from California comes new evidence that an eightfold increase in cases of autism since 1990 cannot simply be the result of greater knowledge or willingness to diagnose. This contradicts earlier studies. Others have suggested "aggressive lobbying" on behalf of ASD - or even the prominence of cultural artefacts such as Rain Man and The Curious Incident of the Dog in the Night - have played a role. Whatever the truth of that, something is happening to create an autism "epidemic", and nobody's quite sure what it is (although it definitely isn't MMR).

There's something very peculiar about all this - especially when you consider that autism didn't actually exist before 1943. That isn't entirely true, of course - there were cases in the medical literature which can retrospectively be identified as portraying autism, such as the "wild boy of Aveyron". But such cases were few and far between. The specific constellation of symptoms - social withdrawal, difficulty in communicating, extreme self-absorption, stereotyped behaviour - had never been clinically described. The word itself was coined in 1919 to describe an extreme form of schizophrenia in which an individual becomes completely detached from the world, retreating into an inner landscape, but it was not used in the modern sense until Leo Kanner and Hans Asperger, two scientists of Austrian background but working independently (one in Vienna, the other in the United States) described the condition in 1943-44.

It was Asperger who first suggested that autism represented "an extreme type of the male brain". Baron-Cohen's theory that it is caused - or at least signalled - by an excess of testosterone in the womb would seem to be in line with that early view. His research - or at least his adroit spinning of it - raises the possibility that foetuses at risk of developing autism might be selectively terminated. This would seem to have fuelled much of the debate, even though all Baron-Cohen has so far shown is a statistical correlation between in utero testosterone exposure and later autistic symptoms. A reliable test is still a very long way off - though you wouldn't realise that from reading the Guardian.

The notion of an "autistic spectrum" itself is open to challenge, if not on scientific then certainly on social grounds. How helpful is a category embracing, at one end, people with severe disablement disbarring them from most aspects of normal life and, at the other, perfectly functional people who don't enjoy parties very much? Whatever the findings from California, it's clear that there has been a very large increase in diagnosis, and people who previously might have been considered merely introverted, obsessive or anti-social are now told that they are "suffering" from a "condition". It has become "fashionable". Some embrace and internalise that label as an explanation, a form of identity, a coping strategy, or even a political platform. Others, though, may be discouraged and further isolated; find themselves treated differently by other people; lose employment opportunities or even aspirations; or just stop trying, taking comfort from the "knowledge" that they can never be like "other people".

One of the contributors to the CIF debate, Nadine Stavonina de Montagnac (crazy name, fairly crazy lady) defines herself among other things as an "autism activist" and writes on her MySpace page as follows:

Having Autism means that I often misread people and their intentions and fall prey to those with unscrupulous tendencies or the need to bully. Autistic people miss out on 92 per cent of communication (which is non-verbal) and rely on the 8 per cent that is verbal so we get into difficulties rather a lot. That's why I trust writing and reading and tend to have brilliant relationships with books, dictionaries in particular. I love learning, I am very interested in people, despite face to face communication with 'normal' (non-Autistic) people being a minefield for me for the most part.

But then you look at her remarkable career and you start to wonder. As she describes herself, she is "an award-winning screenwriter" (for her Channel 4 play, Coming up for Air, based on her experiences as an erotic dancer). She has also worked in theatre, was a contestant on the X Factor, is by all accounts happily married, and claims that her condition gives her "a fresh outlook on life in general." Her autism, such that it is, doesn't seem to have adversely affected her life; for all her protestations she would seem to have little difficulty relating to or communicating with others. Rather, she has successfully exploited the diagnosis as one of her "unique selling points". Well, good luck to her. But there would seem to be little objective reason for deeming her a personality type as a medical condition.

Not all people with such a diangosis, however, will cope with it quite so well as Ms Stavonina de Montagnac appears to have done. For many, the label will bring with it social stigma, welfare dependency and limited horizons. Yet if the word "autism" has a short history, medical historians have not been reluctant to plug the gap. Almost any outstanding thinker or high achiever with poor social skills and obsessive habits may find himself fingered as a possible Asperger's victim. The philosopher Wittgenstein (although an alternative theory has him down as schizophrenic), the theoretical physicist Paul Dirac, even Einstein himself (evidence: a distaste for socks) have all been identified, as has Hans Christian Anderson. Less likely candidates - though speculated about and widely quoted - include Vincent Van Gogh and even Mozart, a suggestion which strikes me as utterly ridiculous. A more socially confident, gregarious or psychologically normal genius it is hard to imagine.

Isaac Newton, on the other hand, sounds like a clear case of Asperger's. He was a strange, socially inept obsessive, practically a recluse, given to strange obsessions. His experiments on optics included sticking needles into his eyes, the results of which he recorded in matter-of-fact scientific Latin. He spent years trying to decode the Bible in order to determine the date of the Second Coming, and filled hundreds of notebooks with the results of his alchemical research. Immanuel Kant's obsession with routine has also raised some Asperger's-conscious eyebrows. It was common practice for people in the town of Konigsberg where he spent his entire life to set their watches by his daily perambulations, so unvarying were his daily habits. Journal of Medical Biography a few years ago published an article suggesting detailed reasons for thinking even Michaelangelo to have been thus afflicted: they included the facts that he was "not a great public speaker" and "was strange, preoccupied with his own reality and almost always worked alone." A "loner", in other words. How the Sun would have loved him.

I'm not autistic. At least, I don't think I am - although these days, it's hard to be sure, given the alarming spread of the condition and its capaciousness as a diagnostic category. Not being much of a party animal myself - and spending rather too much time in front of a computer - perhaps I should be worried.

But then, when you start to look, it's easy to spot autism everywhere. I Googled "Gordon Brown autistic" and up popped 111,000 responses. George Osborne, the shadow chancellor, got into trouble in 2006 when he used the term in relation to his then opposite number at a Tory conference fringe meeting. Last year Guido used the rumour that the prime minister has "high functioning Asperger's" as the basis of a post headed "Is Brown Bonkers?", praying in aid Gordon's "hysterical rants, the rages, the odd behaviour" and also "the repetitive mantras, the uncorrelated bizarre smiles, the complete inability to empathise." Friends of Brown testify to his private warmth and good humour: but he is a difficult, driven man with little time for small talk. The same thing was true of Margaret Thatcher, but she has never to my knowledge had the A-word flung at her. Perhaps it would be different today. Bill Gates is another frequently-claimed Asperger's candidate: a search for him yields more than 300,000 results, headed by an article from no less a source than Time magazine. Autism may be one of a small handful of medical conditions which may still be used as a term of abuse with relative impunity, an interesting fact in itself.

There's a good case to be made that autism is endemic in the British royal family. King George V was known for his obsessive interests - stamp collecting, shooting pheasants, uniforms - and for his awkward personality and love of routine. His younger son, Prince John, was epileptic, a condition sometimes associated with autism, and his learning impairment has caused him retrospectively to bee dignosed as a severely autistic. The king's, later George VI, was socially extremely awkward and suffered from intense and unpredictable rages. Even the present Queen is notorious for her social awkwardness, lack of small talk, and stilted performances at Christmas. Prince Charles talks to plants - and is famous for his self-absorption and lack of self-awareness. Possibly they get it from Prince Albert, whose combination of shyness and a mastery of technical subjects hint that he had at the very least some tendencies that way.

Then again, it might not be genetic: it might be the mere fact of being royal that turns these people into social isolates incapable of interacting normally with other people.

What does the explosion in autistic spectrum disorder - whether it is an explosion of actual numbers, or merely one of diagnosis - tell us about modern society? Quite a lot, I feel. It has been pointed out that the emergence of autism as a recognised medical condition in the 1940s coincided with Modernism's emphasis on the individual and Existentialism's interest in alienation. Indeed, it was in 1942 that Albert Camus published his novella L'Etranger, which reads today almost like a textbook study of Asperger's syndrome. Yet it is far more recently - since the arrival of the home computer and the Internet, in fact - that cases of autism and autism-related conditions have multiplied. This coincidence leads me to suspect that some of these conditions may be triggered by aspects of modern life: the atomisation of society, the emphasis on social and economic competition, the absorption of children for long periods in virtual-reality constructs such as video games, modern parenting practices which keep children indoors and "protect" them from the rough-and-tumble of unsupervised interaction which might be vital for social and psychological development, and so on.

But that's not all. Perhaps modern society, in addition to producing autism, is itself in significant ways autistic. The bureaucratic machinery of the modern state seems to function in an autistic manner, producing and following rigid rules and processes, accumulating vast quantities of information, obsessed with its own priorities. In many corporations as well as the government initiative and spontaneity invite suspicion - instead, no failure is so great that it cannot be excused by proving that those responsible for the foul-up were "following correct procedures". The passive voice - the grammatical equivalent of autism - predominates in press releases and official letters ("mistakes were made", "lessons will be learned"). Banks long ago replaced the local knowledge of the traditional manager with automated call centres and loan-assessement systems in which "computer says No" (or, too often in recent years, "Yes"). In ordinary life, the media bombards us with messages to put personal fulfilment ahead of social obligation; people hardly know their neighbours or, with long working hours and almost as long hours of commuting, even their children.

Such an awareness lurks somewhere beneath the surface, seeking an outlet. Just as society's pervasive sexualisation - and its inevitable impact on children - produces periodic panics about paedophilia or internet porn, so the autism of modern life brings in its wake an explosion in numbers of people who, as it were, internalise this condition. But there's a flip-side. For one aspect of modern society's autistic temperament is its inability to relate to the different or the unexpected. Despite glib talk of "diversity" and "inclusiveness", what is most notable about today's world is its rampant conformism. Even "diversity", which if it meant anything ought to celebrate the million forms of human variability, in reality signifies a box-ticking exercise in which targets can be achieved by placing people in a limited number of pre-defined categories of sex, race, sexual orientation and religion.

In previous generations, while some autistics would have been socially cut off and ostracised, others would have functioned normally: in a less self-consciously regulated society their foibles might be accommodated, or even valued. But eccentricity or unusually focused interest on a particular topic is no longer to be tolerated - or at least, not as itself. It can, however, be pathologised, diagnosed as an "autistic spectrum disorder", and added to the centrally-approved list. Much of the modern "epidemic" of autism may therefore be an epidemic, not of autism itself, but of diagnoses of autism.

Another point: although I've discerned an autistic orientation of society in its obsession with processes, its abstraction and its dependence on computer technology, such things are socially de-emphasised. Instead, we are told to value such things as interpersonal skills, "emotional intelligence" (or Machiavellian manipulation, if we're being brutally honest), teamwork; we're encouraged to indulge feelings and achieve "happiness" (itself autistically repackaged as something that can be taught); formerly serious newspapers find space to inform us of the state of Kate Winslet's waistline or Angelina Jolie's children. Culturally, these "soft" attributes are identified as feminine; just as the abstract, technological stuff is supposedly male.

Concentration on one thing to the exclusion of all else represents the antithesis of the skimming superficiality of modern culture: the short attention span, the flitting from one thing to the next, the emphasis on feeling rather than knowing, even the official suspicion of due process in favour of outcome, all these are challenged by the single-mindedness of the autistic. They may also be indirectly responsible for the problems experienced by people with Asperger's. Similarly, the de-structuring of many aspects of modern life: the open-plan offices, the flattening-out of the traditional career, the emphasis on portfolios and social networking - such phenomena increase the isolation and incapacity of the mildly autistic.

And of course it's convenient for people to be worrying about the plot of EastEnders rather than, say, the erosion of civil liberties. In terms of cultural categories, then, the system is from Mars while the people are from Venus: or, at least, it is preferred that they should be.

Baron-Cohen's research, by implicating testosterone in the genesis of the condition (and thus reinforcing Asperger's suggestion), supports lends credence to the wider pathologising of "male" phenomena, other aspects of which might be Attention Deficit Disorder (old name: naughtiness) or, for older children, anti-social behaviour (old name: being a teenager). The debate about the possibility of selectively eliminating autism is therefore not simply one of the social and emotional burdens of disability. It is also about the nature of society itself.

UPDATE: On Timmy Worstall's suggestion, here's a link to a discussion of Baron-Cohen's theory of "assortative mating". The idea, basically, is that in an advanced industrial society successful professional types (who might incline towards abstract reasoning and similar personality/thought patterns) marry each other and breed autistic children.


Tim Worstall said...

"Whatever the truth of that, something is happening to create an autism "epidemic", and nobody's quite sure what it is (although it definitely isn't MMR)."

Assortative mating.

WeepingCross said...

Excellent. One of my stock questions for about 10 years has been 'When does a personality become a personality disorder?' This was prompted by talking to a colleague with a brother and sister at different locations on the 'autistic spectrum' and realising that I had plenty of traits which might be similarly described. A small part of me felt rather pleased that such a rationalisation of some of my longstanding social awkwardness was on offer; thankfully, a larger part recognised that without sharper definition of terms it wasn't really very helpful. Now I'm in a job where I spend almost all my time talking to people, often with very little preparation at all, and it causes next to no problem, just because I've got used to doing it. My personality (observing the way others describe me rather than the way I do) has shifted as a result of doing things.

Nadine Stavonina-de Montagnac said...

Hi, this is Nadine Stavonina-de Montagnac and I'd like to ask some questions: why am I branded 'crazy'? I am sane, according to professor Simon Baron-Cohen who diagnosed me with Asperger's syndrome and found that I have no cognitive impairment of any kind. So your assertion is inaccurate and wrong!

And why is a Russian-French name 'crazy'? I was born in Russia - so I have a Russian name - a fairly simple explanation! And I married someone with a French surname therefore I now also have a French name. Is it still crazy, once you know the truth? Or things become a little clearer for you? :-)

And another thing, it is mentioned in your blog that: a) you believe I have a remarkable career (yes, for a foreign-born to be even noticed and not completely destroyed by the British press, it may be remarkable, indeed); and b) you seem to be doubting that an autistic person can do that? Or you think I still don't struggle because of my autism?

Let me put you straight. I may have achieved a little bit in life through winning a short (4 min. long) screen writing competition and they made a pretty average short film out of my award-winning script. That doesn't mean anybody wanted to know when it came to the crunch and I sent off my other scripts. Apparently, my 'problem' was that I wrote about the truth, what really happens in society, about xenophobia, sexism, racism, class and celebrity obsessed shallow culture propagated by the cheap press - and nobody wants to know about truth, do they?

Ok, so I was published a few times in the newspapers which is not that surprising seeing that I'm a qualified journalist with my second University degree in Media & Comms. But I still don't have a job that pays - nothing, zilch, big fat zero! And I struggle with misunderstandings, rejectiong and commmunication difficulties every day. I'm still clinically depressed most days and it's not been long since I recovered from years of alcohol abuse - my stupid way of coping with stress and anxiety brought on by severe communication problems and by being bullied.

Have I done well? To stay alive, yes. Will I continue to fight for the rights of autistic people? You bet. Will I continue to fight to save Gary McKinnon? No doubt about that. Especially since my son is also on the autistic spectrum and my dad was autistic and an alcoholic who couldn't cope well (despite being a famous classical music composer in Russia and branded a music genius before he even died).

It's easy to mock what you don't know but it's even easier to find out what you don't know if you simply ask. I would have told you.

Maybe, I should just write a book and tell the world? I wonder how many of us autistics walk similar paths stumbling alone in the dark, bumping into problems and getting our 'heads smashed' on invisible lamp posts of communication? Loads, probably.

I stick my neck out so that my son may have it easier than I did. I put my ass on the line and in the line of fire because I'm a mom, I can take it (I lived through 2 births and that was hard, I'm telling you).

Let us all have a dialogue - autistics and non-autistics. Let's start communicating.

But one thing is for sure, if you're even noticing me and what I have to say in print: is that Autistics finally have a voice. Because you heard me. You may be didn't get me but it's ok. So cheers for that.

Best wishes,
with respect,

Nadine Stavonina-de Montagnac

p.s. And I must admit I agree with David Icke on all points, by the way