Tuesday 23 September 2008

They're everywhere!

While reading a review of a biography of the Scottish writer Alasdair Gray I was pulled up short by a remark from one of his former girlfriends. When her son fell ill with cancer, Gray offered no support; she summed up his attitude in the sentence: "It was almost as if he didn't understand what was happening." And almost involuntarily, I stopped reading the review and thought: "Is he...?"
Last week I was running around a local park in light rain when a woman came into the park with her son, who looked about 10, and her dog. The mother and dog went off for a walk through the park, the son sat down on a bench with a robot toy and played with it - oblivious to the rain, to the fact his mother had gone for a walk, or to me hurtling round and round the park like a man being chased by a giant wasp. Presently I saw him walking through the park, unperturbed, staring down at his feet, presumably off to meet up with his mother, looking for all the world as if this was the standard pattern for their days out. And I practically had to restrain myself from approaching the woman and saying: "So, is your child autistic too?"
Magteld and I were watching a news item about disruptive teenagers. It ran the gamut of journalistic cliches about children running wild, bunking school, hanging around on street corners looking vaguely menacing, keeping their hands in their pockets, wearing clothes that mark them out as teenagers and other such antisocial traits. At the end came an interview with a boy who was constantly causing trouble in his neighbourhood, alongside his despairing mother. The boy gave only fleeting glances to the interviewer and the camera, and struggled to find his words. And Magteld and I looked at each other and said: "Did you see that?"
I could easily add to this list of people I've observed who look somehow out of place: square pegs in the honeycomb of life. The fact is, all of a sudden I've started to see potentially autistic people everywhere I look: on television, in the place where I work, walking the streets. It's like viewing the world through infra-red goggles, or rotating a glass cube containing a disjointed bundle of sticks through 180 degrees to reveal a box-frame. There are hazards here: autism is a difficult condition that takes a team of specialists several weeks to diagnose. There are all sorts of reasons why an unruly teenager might act surly, or a famous writer might be self-absorbed, or a young boy might be more interested in his toys than his mother on a particular morning. A friend who also has an autistic son said to me at the weekend: "you can spot them." And while the autistic radar may not always be spot-on, there's no escaping the fact that autism has changed the way we look at the world for ever.

Wednesday 10 September 2008

The nature of things

Autism can be a maddeningly elusive condition. It is a disability, but it is not disabling in the easily categorised way that losing a limb is disabling, and as a result compensating for what is missing is far less straightforward than attaching a prosthetic arm or leg. In fact, much of the confusion exists because it can be hard to grasp exactly where the shortfall lies. Autistic people, as one therapist put it to me, "look normal", and sometimes act normal; they have learning difficulties, but they are not incapable of learning. (As an aside, I'm used to assuming that highly visible conditions such as Down's syndrome must attract unwanted attention, but lately I've learned of the opposite problem from parents who say: "if only people could see my child's disability, they wouldn't be so quick to judge his behaviour in public").
There is a mountain of literature on the nature of autism and I anticipate spending much of the next decade ploughing through it. For now I'm on the nursery slopes, flipping through Simon Baron-Cohen's slimline but illuminating Mindblindness. One notion in particular stood out: the concept of "skin-bags", first put forward by psychologist Alison Gopnitz. She speculates on how a "mindblind" person would experience a family dinner: "Imagine that the noisy skin-bags suddenly moved toward you, and their noises grew loud, and you had no idea why, no way of explaining them or predicting what they would do."
I should confess from the outset to having a preference for colourful images over hard, dry scientific reasoning. But the more I thought about the skin-bags theory, the more I started to reconcile it with Euan's behaviour. Put simply, I started to wonder if part of the problem was an inability to distinguish objects from people. It might help to explain why he can't understand that Adam doesn't like to play with him when he's tired; why he is terrified of dogs in the park, but happy to watch them on television; why he treats Magteld and me like climbing-frames, clambering over us when we're sitting on the sofa as if we're extensions of the furniture. Euan is constantly banging his fists against things: walls, the furniture, books and his parents - at first we put it down to boisterousness, but could it be he just wants to know what we sound like? He is fascinated by movement, watches running taps and CD player displays as avidly as he follows a film on television. He is adept at learning in sequences, which is perhaps why he is so much better at counting than at forming sentences. I'm starting to think that he finds the world a far more interesting place than I've given him credit for. The downside is it's a far more uncertain one, too, where the slightest deviation from routine can be overwhelming. Objects make sense; people often do not - this may be the hardest thing we have to teach Euan.

Wednesday 3 September 2008


A very short entry to say that on September 14 I will be running the City of Stirling 10K to raise money for the National Autistic Society. You can donate by clicking here.

Monday 1 September 2008

First school days

Two weeks ago Euan started school. It's a fraught time for any parent, but for us the usual run-of-the-mill nerves were magnified by fresh uncertainties. Not only had he been diagnosed as autistic, but the diagnosis had raised the very real prospect that he might fail altogether to cope with the school environment.
Luckily the local primary school in the area of Glasgow where we live has a good track record of handling children with autism, and the secondary school just up the road even has a specialist autism unit. So we were reassured he would be in good hands. During the school holidays Euan attended a specialist nursery where autistic children were prepared for the school routine: they were instructed to arrive every day with a school bag and a snack and encouraged to take part in different activities every day. Euan's report from this nursery suggested he was ready for school, but we knew that this was a pre-season friendly: the real challenges lay ahead.
The first of these was the uniform. Euan's school had reassured us that there would be no trouble if he refused to wear his school clothes, but we were determined that he should stand out as little as possible from the other children. It took the best part of an hour, and some wrestling moves that would have made the Undertaker blanch, to squeeze him into his uniform on the first day, but it turned out to be a watershed moment. The second day was a struggle again, but on day three Euan readily put on his uniform and then hung around by the front door, waiting impatiently to leave the house. The act of putting his uniform on seems to engage him in "school mode" and trigger a series of now-familiar routines: packing his bag, walking the 10 minutes up the road, lining up for class, waving bye-bye and shuffling happily into class.
What happens thereafter is, admittedly, a little cloudy. Euan will now and again sing a song he has learned in class, shows some fleeting interest in his homework (at least, the parts that involve singing and acting out physical routines) and says "I like the school" when asked, but meaningful conversation is impossible. He is supposed to have a specialist support worker with him in class, but somewhere along the line his paperwork has been lost in the system (a phrase I fear will echo through his childhood) and he has to make do with a general assistant. There are still question marks about his ability to understand, concentrate and follow instructions. But at the moment it's early days, and while it's still hard to know if he can manage with the discipline of school, he has already shown himself to be more adaptable than we could have believed a few months ago. The hard questions about Euan and the school system don't avail themselves of easy answers. We can only be patient.