Thursday 29 January 2009

On Loyalty

Last week I was lucky enough to be able to write about Euan for The Herald Magazine, the Glasgow-based newspaper supplement where I work (you can read the finished article here). As part of the exercise I interviewed Simon Baron-Cohen, and while talking to him I took the chance to ask him about a less obvious trait of autism that I'd recently found out about. His answers were enlightening and, in a way, heartening.
Let's start with a well-known drawback: autistic people have great difficulty making friends. Those with Asperger's syndrome, in particular, often experience extreme frustration and worse from their difficulties in forming social relationships. It can seem as if the real world is something that happens on the opposite side of a ravine: you can look and shout across, but unless someone is prepared to throw you a rope bridge, you have little hope of joining in.
And yet there's a lot of anecdotal evidence that autistic people make extremely good friends to those who can manage to put up with their anti-social quirks (which can be equally frustrating to the non-autistic friend). In short, they can be fiercely, almost intimidatingly loyal. Baron-Cohen put it this way: "A lot of people with autism figure out their own rules of morality and believe passionately in things being done correctly, and certainly don’t have any wish to harm other people. So they may well have figured out that the world can be divided into people who are good to you or people who are bad to you, and they want to be good to other people and expect the same back in return. So that notion of loyalty is simply because people with autism don’t typically engage in deception ... I think there’s a huge honesty in people with autism, and you could say that that’s not common in the wider social world."
So there you have it: part of autism is not "getting" the notion of lying; of deceiving others for your own advantage; of ingratiating oneself with people one secretly can't stand. It can make autistic people look blunt, rude and stand-offish; but it also reflects a desire to stay true to yourself and not to sacrifice your principles for short-term personal gain. Baron-Cohen likened it to the habit, common among autistic children, of taking toys and pens apart: "When you take a toy apart to try and understand how it works, you’re trying to get at the truth of the world: what is the truth of this object? When you interact with people you also expect that what they tell you should be true, and what you tell other people should be true. So I think there’s a strong focus on the truth and they don’t necessarily see the point in lies or not being genuine."
Looked at from that perspective, it begs the question: who's really disabled - The autistic child, or the neurotypical adult who's built a labyrinth of lies to excuse their behaviour?

Sunday 18 January 2009

Look and learn

Euan is sitting at the breakfast table when he suddenly points out of the window, a confident grin on his face, and declares: "Look! A chimney!" I look and, sure enough, he's pointing at the roof of a house in the row behind ours.
Now, the chimney was there long before we moved into the house. Euan has sat in the same spot at the breakfast table on hundreds of occasions and looked out of the window. Yet until now he's never drawn attention to the chimney, though he must have seen it. So why the sudden interest?
We've had a new window on to Euan's thought processes recently: learning to read. As I mentioned in an earlier entry, he's taken to spelling out the names of things as he sees them. He'll find me cooking in the kitchen and point to the pan, saying: "p-a-n". Sometimes he'll even try to spell a word he's never seen written down (and, since he has the misfortune in this regard to be a native speaker of English, get bogged down in by the quicksand of non-phonetic spelling). One of his favourite books is a dictionary which contains a picture of a house, surrounded by smaller pictures labelling the different parts. Hence the sudden affinity for chimneys.
What this has revealed to us is that Euan is a highly visual learner, and, given the right stimuli, a remarkably quick one. He learned the alphabet by setting down the magnetic fridge letters on the table in sequence, from a to z, until he knew it by heart. He memorises books from cover to cover, first learning the story through the pictures, then going over the words again and again until he can read them fluently off the page. Sentences are still a challenge for him, but he has a genuine love of words.
When Euan was younger we thought he might have an aptitude for maths, since he was able to read off three-digit numbers from the age of three. But he's never progressed to doing calculations and it seems he just loves recognising and reading the symbols. As I'm generally wary of the myth that autistic people are closet geniuses, I was almost relieved to discover this. It's a faculty we've exploited to make shopping trips easier, by writing out visual shopping lists with pictures of all the items. This has created its own problems by exposing my meagre artistic ability: I'd never thought it could be so difficult to draw an orange. And, as with most things where Euan's concerned, it was a trial-and-error process: the first time I took him shopping with a list, he enthusiastically went round ticking off all the items. The next day I made a new list, but forgot to throw the previous day's list away. Euan found it and insisted on shopping with the list he knew, rather than the one I'd made up for that day. So we ended up taking both, and buying enough bread and milk to last us through a minor conflict.

Wednesday 7 January 2009

To screen or not to screen?

I've spent a large part of today talking to radio stations in response to Simon Baron-Cohen's adroitly seeded article on the BBC's website on the prospect of prenatal screenings for autism. It kicked off a lively debate, particularly on the BBC network, that reflects the wide public concern over the issues of autism and abortion.
Baron-Cohen raised the issue to allow time for a proper debate about the ethical implications of prenatal screening. He believes that testing is inevitable and will probably be available within a few years. One of his main concerns is that we might, through treatment or termination, sweep away brilliant scientific or mathematical minds in a misguided drive to eliminate the condition. In case I have misrepresented him, here are his actual words: "Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently 'cure' not just autism but the associated talents that are not in need of treatment."
I find the worry about eradicating the next generation of Einsteins to be the weak link in Baron-Cohen's argument. Very few autistic people possess that level of talent, though it is true that a disproportionate number of winners of science's major prizes register on the autism spectrum. However, if I may flip the whole debate on its head for a second, the hope that their child might be an artistic or mathematical genius is perhaps the worst possible reason for continuing an unwanted pregnancy. Autistic children are hugely demanding on their parents, regularly trigger family breakdown, and even the extremely high achievers often experience isolation, alienation, depression and impoverished emotional lives as adults. There is a tendency to romanticise the suffering of geniuses such as Mozart, Einstein and Van Gogh, as if their achievements somehow compensated for their personal problems. Any in-depth examination of their lives will show that this is far from the case.
Which brings us back to the delicate matter of abortion. The public debate has been concentrated on this question, in sometimes apocalyptic tones. There is a widespread fear that mass abortion would ensue, and out of this has come a conviction that prenatal testing should be resisted. I share Baron-Cohen's belief that testing is inevitable, as well as his concern that doctors might be too quick to recommend termination of an autistic foetus. But the idea that parents will automatically take the "easy way out" en masse seems to me to be hugely ill-founded. Babies are conceived in all kinds of circumstances, but as far as planned pregnancies go, it defies logic to assume that a couple who have spent months, perhaps years, making the decision to have a baby, considering its prospects, making space in their home and social lives, and maybe even reading several books on the subject, will suddenly take fright in this way. Being told your child is autistic is, initially, a bitter pill to swallow, but with time comes understanding of the condition and a realisation that, with the right support and therapy, even a severely autistic child can make enormous progress and offer its family the kind of rewards you don't get anywhere else.
My concern is not about whether these tests should exist, since it seems certain they will exist, and any attempt to force the government to reject them will only create an opening to be exploited by private clinics. And frankly, this is too big an issue to be left to the commercial market. The wider issue is about how the tests will work and how they should be applied. It will, necessarily, be a crude measure, and further testing will undoubtedly be needed after the child is born. Some autistic people spend their lives in institutions; others win Nobel prizes; I cannot imagine how a test in the womb could begin to distinguish between the two. Parents who choose to take the test ought to be advised on the full scope of the autism spectrum and the range of help and support available, preferably at the moment that the word autism is first pronounced by a doctor. To be told flatly: "Your child will be autistic" does not allow an informed choice. The initial shock needs to be absorbed and put in context.
There is no denying that some parents will take the test, see the result, and terminate a child they might otherwise have had. This is unavoidable. But it is not universal, as the experience of Down's syndrome testing has shown. And for those who choose to go ahead, knowing that their child is autistic at the earliest stage, having the chance to come to terms with it, and being put in touch with the network of autism support services, has to be a good thing. When I think back to the turbulent times Magteld and I went through in the build-up to Euan's diagnosis, I would have to be a very heartless person to wish that kind of experience on anybody else.
Ultimately, people will draw their own conclusions. Here are mine. Firstly, that prenatal screenings for autism, in some form, are inevitable, and that the debate about whether they are right or wrong is tangential to the issue. But when they do arrive, it is surely preferable to have them introduced through the regulated public health system than by private clinics. Secondly, that a lot of prospective parents are not impressionable simpletons who will dash to the abortion clinic at the slightest provocation, but conscientious people who have carefully weighed up the decision to have a child in the first place and should not have vital information withheld from them without good reason. Thirdly, that autistic people are special individuals who, given the right support, can achieve remarkable things, and who deserve our admiration whether that achievement turns out to be a Nobel prize or learning to buy their own groceries. And finally, that if the general population could learn to be more accommodating to people with autism and appreciate their talents, society would be a better place. We need our Einsteins, and they need us.