The Hanen programme

For the last 10 weeks we've been attending the Hanen programme, a speech and language course that teaches parents how to help their children communicate. Developed in Canada in the 1970s, it's one of the most widely used programmes of instruction for parents whose children have been recently diagnosed. It breaks down the communication process into small steps: how to intrude in their solo play; cutting out unnecessary words and phrases; using cues to make games and activities interactive. It shows, for example, how bedtime routines can be made more manageable by breaking them down into a series of small, predictable steps that the child can follow. Removing the source of anxiety, whether it's over-stimulation, under-stimulation or outright bewilderment, is often the first step on the road.
Perhaps the genius of the Hanen strategy is that it tackles a hugely complex problem in simple ways. It doesn't promise miracle cures or insist on strict, unnatural routines. It doesn't bombard you with arcane jargon (though the developers are a little too fond of acronyms for my liking). And neither does it frighten you into thinking that your child will be locked away in a cocoon for ever unless you follow its instructions by the letter. Instead it focuses on the relationship between parent and child and takes a structural approach to interaction on the activities you're already doing with your child and looks to incorporate them into an overall structure.
My one reservation is that by the time we attended the group, Euan was already starting to make progress in his speech and it felt as if some of the advice was already redundant. That's not the fault of the organisers, as we'd had to turn down a place in an earlier programme. But it does illustrate that Hanen is best suited to parents whose children have just been diagnosed.
However, during the 10 weeks of the programme Euan became markedly more expressive and sociable. His speech is suddenly more sophisticated - yesterday he asked for a towel, unprompted, when he spilled his milk at the breakfast table. It's hard to believe this was sheer coincidence. His school reported that he was starting to use spontaneous speech, asking the teacher for help, for example, where before he would have looked lost or got upset. In the playground I've watched him start to play with his peers when only a few months ago he stood sentry-like by my side, watching thoughtfully as the other children ran around him.
On the whole, I'd recommend it. Don't expect to have all your questions answered instantly or to see your difficulties vanish overnight. Understanding an autistic mind can feel like untangling a ball of string, but really it's a lot more complicated than that. The Hanen approach is more akin to setting guidelines that leave the key decisions in the parents' hands. As such, it's empowering. It also emphasises that progress with autistic children should be measured in short steps rather than giant leaps: it takes time and effort, but you'll get there if you persevere.

The ignoble Savage

Thanks to the pre-emptive actions of Jacqui Smith, it looks as if I'll have to shelve any plans to go out for a drink with Michael Savage in the near future. The crude, loudmouth “shock jock” who has made a lucrative career out of firing off insults at gays, Muslims, autistic children and anyone else whose face he doesn't like has been banned from Britain.
I find this a hugely puzzling and self-defeating gesture by the Government. Everything Michael Savage (not his real name, but a camp showbiz sobriquet in the tradition of Coco Chanel) has to say about autism is offensive, pigheaded and plain wrong. But does he really pose a serious threat to the foundation of our society, as Jacqui Smith implies in grouping him with suspected terrorists? If that were true, I'd have to question if we had a civilisation worth defending. Preachers to the ignorant, which is what Savage is, are aggravating, attention-seeking and sometimes disturbing (not unlike autistic children, in fact), but the very last thing they should be seen as is threatening. It stokes their misplaced sense of self-importance and allows them to portray themselves as “the little man taking pot shots at the powerful” when the very opposite is true: Savage has earned a tidy fortune and a huge media presence from peddling his uninformed prejudices, at the expense of some of the most vulnerable in society.
Savage's arguments aren't hard to knock down. He says: “There is no definitive diagnosis for autism. None.” This will come as a surprise to the three doctors who wrote a four-page report diagnosing Euan's autism in clear and specific terms. He claims autistic children “don't have a father around to tell them don't act like a moron, you'll get nowhere in life.” Savage's own career path is a living refutation of that latter statement. “In 99 per cent of cases it's a brat who hasn't been told to cut the act out.” If we translate the self-consciously folksy rhetoric into proper English, he's saying that autistic children haven't been shown how to behave, when in fact there's a huge span of successful therapies devoted to exactly that issue.
Until yesterday I suspect most people in Britain hadn't heard of Michael Savage, and were much better off for it. Now, thanks to Jacqui Smith's needless grandstanding, I've absorbed far more of his subliterate bile than I ever wanted to hear. I almost wonder if I shouldn't sue the Government myself for causing me needless distress. Sure, I wouldn't invite Michael Savage into my living-room, but I don't see that as a reason to exclude him from the country. In fact, let him come over and reveal himself for what he is: an overgrown playground bully who gets his kicks from picking on those who can't fight back. Or, to put it another way: Come over here and say that, Mike. And if you haven't got the bottle, cut out the dumbass act.

An open book

It's no exaggeration to say that reading has transformed Euan's world. In common with many autistic children, he took to books eagerly, quickly memorising the letter sounds, then combining them to form simple words which were soon supplemented by longer ones. Sometimes I see him visualising words in front of him, writing them in the air as he walks to school. He sees an object and his first thought is to spell it - "newspaper" earned a recent round of applause. But this eagerness has also brought a fundamental problem to the surface, a kind of semantic near-sightedness: Euan struggles to connect the symbol to the meaning.
On a basic level, this means that when reading a picture book, Euan will speed through the text, but fail to absorb the story. He points at the words rather than the items they signify. He likes words for their sound, which is why when his teacher asks him what he had for supper the previous night, he's likely to reply "sausages", even when he ate something else (what must his school make of our diet?). Other favourites are the Dutch words pompoen (pumpkin) and lieveheersbeestje (ladybird).
Is this, really, the underlying problem of autism - that the autistic person can't distinguish appearance from intent or follow chains of meaning (for example, "let's go to the shop" will often trigger a tantrum, but "put your shoes on and come to the shop" is usually accepted)? It might explain why we've had more success in communicating with Euan since we stopped using complex instructions that required him to fill in the blanks and stuck to the core components - so that instead of saying: "Euan, get ready for bed," we now say, "Euan, go upstairs and put your pyjamas on", followed by: "Euan, brush your teeth", "Euan, choose a book to read" and "Euan, get into bed". All of them separate, distinct, and in sequence. When we went to visit my parents in Norfolk last month, we went by train and emphasised the journey itself - which he could understand - rather than the destination, which would have been too vague and abstract in his mind (and ours - it was a seven-hour journey, after all). I produced a pictured book for him on the computer, showing the stages of the journey and what we would do on the way (have lunch, look at cows out of the window) and it helped him enjoy the journey rather than feel anxious at the strange new experience.
Whatever the reason, the written word has been an enabling tool for Euan - and for us. His sketchpad is the most important piece of equipment in our house: it's a learning accessory, a message board, a scheduling tool and a source of entertainment all at once. In the morning we write his school routine on it (breakfast, get dressed, CD, go to school), and at night he takes it to bed with him, writing out words from his books until he falls asleep. It's a literal world in every sense - and therein lies the challenge.

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?

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.