Friday 18 December 2009

More on Adam

Magteld and I swithered for months about whether to have Adam assessed. There was nothing to worry about. There was something not right, but it couldn’t be autism, because he made eye contact, responded appropriately to questions and didn’t share Euan’s more extreme habits, like endlessly fidgeting or standing by the radiator singing to himself.
But the doubts kept nipping at us. As long ago as last Christmas we noticed how Adam wasn’t joining in with his nursery carol singing. We remarked on his curious habit of dragging toys across his field of vision. We registered his delayed speech and the way he froze in the presence of strangers. A playworker started coming out to see him once a week in April; it was October before she heard his voice. And then a couple of incidents happened that pretty much settled it.
A month ago Euan fractured his shoulder at school. We still don’t know how it happened: Euan’s communication is improving, to the point where a few weeks ago he was able to give me a basic run-through of his day. I never would have thought that a sentence like ‘we planted some potatoes’ could move me to the brink of tears. But relating something as complicated as a fractured shoulder remains a long way beyond his capabilities. Euan has a curious relationship with trauma: he will scream his head off if you threaten to take him away from the computer, and wail plaintively if his second slice of toast at breakfast time is a beat too late, but a really serious setback (thankfully, he’s only had a tiny number in his life) knocks him dumb. His shoulder was only noticed when a teacher saw him swinging his arm limply. When she tried to touch it, he flinched away. So Magteld took him home, thinking it was nothing more than a bruise, until he started wincing in pain in the early evening.
She took him up to the local Accident and Emergency department, with Adam in tow. I arrived soon after, straight from work. Euan was walking down a corridor wrapped in a blanket with Adam clinging to him, crying: “Euan, put your T-shirt back on” over and over again. “He’s very repetitive, isn’t he,” observed the nurse. While Euan sat quietly on the couch waiting to be examined, Adam was inconsolable. Nothing we said could assuage his sense of bewilderment. The routine was broken and he couldn’t understand why.
The week before he was about to leave nursery when one of the nurses reached into the fridge and handed him a carton of milk. The next day, at going-home time, he went to the fridge. Again he got a carton of milk. It was a classic case of kindness unwittingly being cruel. Because when, a few days later, the nurses stopped handing out the free milk, Adam was at a loss to understand why. No explanation in the world would suffice. His routine had been stopped, summarily. He howled all the way home.
How does this make him different from other children? In a word: rigidity. By the age of four, children ordinarily have a sophisticated arsenal of pestering techniques for getting what they want. All Adam can do is monotonously repeat the same demand. At times it's like watching a fly smacking its head against the same window pane again and again, oblivious to the possibility of other exits.

Wednesday 2 December 2009

The thin line

A while ago I was minded to respond to a blog I read by the BBC reporter Mark Easton in the wake of the Baby Peter case. Since then I've read several others that touch on the same question: what can we do to spot child abuse before it's too late?
Easton is a conscientious, fair-minded journalist, and I don't mean that as an opening gambit in some kind of veiled attack. He tackles with intelligence some of the darkest, most unfathomable excesses of society, including child neglect. Like anyone with a scrap of humanity, he is concerned that an incident has to escalate, sometimes to the point of murder or serious crime, before anything is done, and investigates the possibilities of improving early intervention. But unfortunately, in doing so he unwittingly raises the spectre of Bettelheim.
In studying the case of two young brothers who carried out a series of vicious attacks in Doncaster, Easton describes an experiment in which a mother was put in a sealed room with her child and instructed not to make eye contact in the usual way. Unsurprisingly, deprived of its tried and trusted means of communication, the infant quickly became hysterical. This experiment is used to illustrate an earlier point about the two brothers: "What these children's behaviour tells us is that they lacked empathy... Without it, even very young children are capable of horrifying cruelty." In a later entry, Easton comments: "Neglect is the most common form of child abuse and it is going on in your community right now."
It's perhaps unfair of me to single out Easton's sober analysis when others who may soon have a more direct influence on public policy are making more dramatic statements (such as Iain Duncan Smith's recent proclaimation that "there are now a growing number of families who are dysfunctional".) The problem is that now and again I come across a sentence in Easton's discourse that makes me shudder, like this one: "By the age of two, these children were clearly emotionally injured - some biting and scratching other kids, others cowering in a corner."
I've seen children cower in corners, or run out of the room to flee unwanted attention. I know children who sometimes kick, head-butt, bite, scream and scratch. I can't be sure they're not being abused, but I know there's another possible explanation for their behaviour, and I know because one of the children I've just described is Euan.
In the wake of the Baby P case it was reported that social workers felt under pressure to take children into care more quickly because of the widespread criticism they received for not intervening in time. There is no argument about the horrific nature of the abuse Baby P suffered, or the fact that social services were not properly alert to the danger he was in. The problem is that it's all too easy to start "seeing" abuse everywhere and relying on a blanket safety-first approach that has as much potential for harm as a laissez-faire one.
In the 1960s the now infamous quack psychiatrist Bruno Bettelheim caused a sensation with his book The Empty Fortress, in which he identified a hidden menace to society known as the "refrigerator mother". These women, by starving their offspring of love and affection, were inducing autistic behaviour in them, sometimes without being aware of it. He related the experience of autistic children to the concentration camps (which he himself had survived) and played a key part in the mass institutionalisation of people with autism in the United States. Only after his suicide did it emerge that he had falsified his qualifications in psychiatry, and allegations surfaced that he had abused some of the people in his care. His "refrigerator mother" theory has since been entirely discredited.
Bettelheim contributed to a climate in which children who displayed autistic traits were assumed to have been abused by their parents. My concern here is that when genuinely awful cases of abuse such as that of Baby P spark mass panic about the scale of child abuse, and when even reasonable commentators such as Mark Easton write that children who are withdrawn or uncommunicative are "clearly emotionally injured", there is a real danger of history repeating itself. We understand autism better now as a society, and the support given to families who have received a diagnosis is immeasurably better than it was in Bettelheim's day, but for families at the vulnerable pre-diagnosis stage, a wrong call or a hasty one can destroy the child's life. Parents of young children with autism are hugely suggestible, as they have no idea what they are up against; Magteld and I have both remarked that if somebody in authority had told us when Euan was a toddler that we were emotionally neglecting him, we would have accepted it unquestioningly. By then we were too confused, too emotionally exhausted and too scared to understand what was really going on. The diametric opposite of the experiment in which a child that normally relies on eye contact is deprived of it is the real-life situation in which a parent is driven to despair by their child's stubborn refusal to make eye contact or offer any other kind of response.
The understandable urge to identify child abuse at the earliest stage, and the rational (and probably accurate) fear that it is more prevalent than we as a society like to admit, cannot be allowed to obscure the need to obtain a full picture of a child's circumstances. As Easton also says, we need to understand more and condemn less. When you see a mother in the supermarket shouting in exasperation at a child who seemingly can't bring himself to look at her, it's easy for the untrained eye to assume abuse and forget that the mother may be suffering too. (This isn't just true for autism - perhaps they're both victims of an abusive partner.) What we need is trained eyes, and more of them, to ensure we distinguish genuine cases of abuse from those where other forms of intervention are needed. Otherwise our efforts to save one vulnerable group risk being to the detriment of another.

Small jig of delight

A very short note to say that one of my blog posts from last year, The Consolation of Genius, has been named as runner-up in a competition run by the very lovely people at Leaf Books publishing, over in Wales. So big thanks to them; more details of the competition are on their website

Wednesday 11 November 2009

And then there were two

I wasn't planning to write this entry for a few months, but events have a momentum of their own and sometimes it becomes senseless to swim against the tide. So here it is: we're having Adam, our four-year-old younger son, assessed for Asperger's syndrome.
At the moment it can only be a best guess where his behaviour is concerned. Straight away I should acknowledge that his development has been very different from Euan's. For a long time we thought of him as the "normal" brother who would be burdened with sharing the care of his more severely disabled sibling. But as the months have drifted by it has become gradually clear that he has issues of his own to deal with.
Adam was, in the beginning, a much more communicative boy than his brother. When his grandparents came to stay about two years ago, he made a great show of saying "goedemorgen Opa en Oma" when they came down to breakfast. He went to toddler football and seemed to enjoy the games, though he wasn't so sure about joining in. See, we thought to ourselves: happy. Contented. Aware. Interactive. We can produce mainstream children after all.
He had a few odd habits, but nothing that seemed too serious. He liked to pick up toys, drag them in front of his eyes and set them down in front of him. As he became more mobile - and he was, and is, freakishly agile for his age - he would run up and down beside the hedge with his head swivelled through 90 degrees. Railings and anything else that produced a stroboscopic effect when he walked past it had the same effect.
And then there were the rigid habits: always the yellow plate, never the green or red one. If the yellow plate was in the dishwasher, he'd lie down on the floor rather than eat his breakfast. Give him a cluster of cars or building bricks and he would line them up in a row, then ignore them. The tone of our observations changed, from: "look how nicely he's playing" to "there's another example of inappropriate play," accompanied with a sigh and a roll of the eyes. We knew which way things were heading.
What really clinched it, though, was the speech. Adam was a chatty boy as a toddler, but became more withdrawn at around three. He pointed if he wanted something and nodded or shook his head, only using words if he was forced outright. Given a choice of two things, where he had to verbalise his choice, he would rather walk away. He was particularly taciturn around anyone outside the house, including his own family. It was so extreme he would even stifle his giggles if someone tried to tickle him. And then his nursery, after a lot of coaxing, admitted that he wasn't socialising particularly well, but they hadn't raised it as an issue because he's "no bother". As children who say nothing and just play by themselves tend to be.
We went through all the possibilities: perhaps he was just copying his brother's behaviour; perhaps he was suffering from selective mutism; perhaps he was traumatised somehow by Euan. None of them really fitted. His habits were different in nature from Euan's; he did speak to people, eventually, once he got to know them; and by and large he and Euan get on well, playing games and singing songs together. Sometimes it's as if Adam understands Euan better than we do.
The assessment is in January. I've put off writing about it until now because I fear pre-empting it, but the evidence taken as a whole is pretty overwhelming. And besides, Magteld and I have already more or less adjusted to thinking of ourselves as a family with two autistic children. For better or for worse.
How do we feel about it? Resigned. Fearful. Kicked in the teeth. Enormously anxious. It's coincided with a phase of Euan's behaviour that has become increasingly difficult to manage, as well as a loft conversion that's gone on for far too long. (The events are not unconnected: Euan has clearly been uptight lately because he's been promised the new bedroom at the top of the house.) This week Magteld finally yielded and called on the social work department for help. He will be assessed, though God knows when, given that the social work profession is going through its own traumas at the moment. In the meantime, all we can do is soldier on and repeat to ourselves the old mantra that autism affects children first and their families second. It's a harsh consolation, to say the least.

Tuesday 6 October 2009

(An interlude) Temper, temper

On the face of it, there aren't many advantages to having an autistic child. The disability money doesn't really compensate for the tantrums, lack of interaction and the deprivation of any chance of seeing your child grow up and blossom into an independent adult. Now and again, though, something positive emerges, often somewhere unexpected, to remind you that the effort isn't wholly wasted.
Recently I was in a meeting at which a manager took it upon himself to pull me up in front of my colleagues for my perceived lack of effort and poor teamwork. It's a surprise to encounter this style of management in the modern workplace, like stumbling across a sabre-toothed tiger in your allotment, but alas, it exists. His voice grew louder and louder, his tone more strident and hectoring, his argument less and less reasoned. His face started to go a funny shade of puce and he repeated a small repertoire of stock phrases over and over again. An unpleasant experience, in all.
I think it was the verbal repetition that triggered a gnawing sense of familarity in my head. But as his diatribe continued, I started to notice pieces missing from this tableau. He wasn't starting to flail wildly with his arms and legs, or utter high-pitched guttural shrieks. His face wasn't crinkling up into an expression of wild anguish, he wasn't lying rigidly on the floor screaming or slapping himself in the face, or jumping up to pull me down by the neck. More than once I had to remind myself I wasn't dealing with an autistic child but my workplace supervisor, a fully functioning man in his forties who was lecturing me on how to do my job.
Once I appreciated my manager was doing a rather tame impersonation of my son, I was able to apply the techniques I had developed to deal with Euan's tantrums. Firstly, I could detach myself emotionally from the situation and take in what I was hearing dispassionately. Secondly, I employed the rule "don't engage with the rage", declining the offer of a shouting match and waiting until the storm had passed before venturing a response. And in the meantime I could reflect on whether I should have any more or less respect for a man who believed he could earn it by acting like a six-year-old with a mental disability.
The specific conclusions I drew from the meeting aren't relevant here. But certainly I came away with a sense of how autism can provide a context for other difficult life situations. It supplies you with vast reserves of patience and inoculates you to some extent against the crude methods of the bully. Before I became a parent I would probably have run away and cowered under a desk. These days I'm more inclined to think: "The poor chap. He must be struggling so hard with himself."

Monday 28 September 2009

Having a laugh

It's commonly held that people with autism lack a sense of humour. Specifically, they struggle to understand jokes other than the most basic ones. No less a person than Hans Asperger declared that people with autism "never achieve that particular wisdom and deep intuitive understanding that underlie genuine humour" (translation courtesy of Uta Frith). Then again, you might say, he was Austrian, so what would he know?
Less flippantly, I have to ask: if autism is a humour-free condition, why does Euan spend so much time laughing? In fact, I'd go so far as to say that visual jokes are one of his strongest means of communication. He'll think of something funny, act it out, and look up for our response. The difficulty is understanding what's going on in his mind. When he shares a joke, is he really sharing, or just performing?
Euan's stock in trade is incongruity. There's a section of my Facebook page called My Children's Idea of Art which is filled with impromptu sculptures. Two plant pots with skippy balls sticking out of them; toy cars arranged among fruit in a bowl (actually, some of these are his brother's, but that's another issue...). On the flight to Germany he decided that the little tog that holds the flip-down table up against the seat in front of him was a tap, and spent most of the flight pretending to pour drinks into a cup, accompanying the action with gurgles of delight. He loves to take an object and put it somewhere it doesn't belong: stick-shaped crisps in a drinking cup being a recent example. When he does combine objects that belong together, it's in an incongruent way, such as the time he lined up four plastic buckets, filled them with sand, then planted a spade squarely in the centre of each bucket as if it were a tree.
Euan's sense of humour is idiosyncratic. Perhaps it's a way of subverting his own love of order and routine - if he can control the disorder, he can laugh at it. It may also be why he laughs like a drain whenever he sees someone stub their toe and wince - not out of cruelty, but at the sheer incongruity of seeing a soft toe combine with a hard skirting board, and the extreme contortion of the victim's face that results. Odd facial expressions are another thing that amuses Euan, which is partly why it's so hard to tell him off. The more the rage registers in your face, the greater his delight.
It still leaves the question of whether he does, or can, interact through jokes. I have a sense that it might be a way to connect with him. Verbal jokes are still beyond him, but the evident joy he takes in inventing, sharing and - more rarely - getting jokes contain some encouraging signs. When he looks to someone's face to see if they're laughing, and laughs even harder in response, it's a kind of communication. The next step is regulating it, which means teaching him, among other things, that stubbed toes aren't always funny. But mostly they are.

Saturday 19 September 2009

What lies beneath

Euan has started attending a special needs school. The first week was difficult and exhausting, and not just for him. He would come home from school almost suffocating with bewilderment, letting out strangulated screeches at the slightest provocation, kicking, yelling and crying until bedtime. Everything was strange and frightening, from the bus that picks him up at the door each morning to the new teachers, the smaller class sizes, the unfamiliar mode of learning and the absence of his classroom assistant from his mainstream school. Each of these changes on their own might have been bearable: coming all at once, they must have felt like diving into a bed of nettles. Somebody recently introduced me to the "Coke bottle" analogy of autistic children. They can seem placid and contented during the school day, but all the time they are storing up stress on the inside, like a coke bottle being shaken, and once they come home, the lid blows off. That was Euan for his first week at school.
Slowly, though, he is adjusting to his new surroundings. One thing that helped was being allowed to take his teddy, Greeny, with him. At first we tried to dissuade him, believing like good parents that toys should stay at home. Then we went to a meeting with his teacher and she showed us a photograph in the corridor of Euan holding Greeny. Next she took us into the classroom and explained that Greeny had taken on the role of Euan's monitor, acting as a conduit for explaining his tasks and a reward if he behaved well.
Watching special needs education in action has been a fascinating learning process for us. There is endless negotiation, glacial progress at times, but underpinning it is a tremendous sense of purpose and achievement. Developments are small but revealing. Euan is already benefiting from the closer attention of his new school. His language is improving and he has started drawing stick figures, which gives us a new way to tell stories with him. And then there is the question that keeps coming up, the one the teacher put at the heart of our meeting: "How much does he really understand?"
The short answer to this is: a lot more than we imagined even a few months ago. Euan's mind is constantly turning up surprises. I wrote not so long ago that his affinity for numbers seemed to be more to do with remembering sequences than calculation. Then today something happened that knocked that whole presumption out of the water. Euan was listening to a CD on the computer using Windows Media Player. He likes to watch the visualisations and the time bar that fills up across the bottom of the screen as the track progresses. Today he took things a step further. As he listened to the CD tracks, one by one, he clicked on the time bar and slowly dragged it across the screen, constantly checking his position against the figures on the right which show how much of the track has been played out of the total time. So when the figures showed 1:30/3:00, Euan would have the bar exactly in the centre of the screen.
It wasn't an exact science, but he unmistakeably knew what he was doing. And what he was doing, unmistakeably, was calculating what proportion of the track had been played and expressing it visually. When I though of it like that, I was astonished. It reminded me of what someone had once said about Paul Gascoigne: he may not be bright in the academic sense, but he can measure in his head in a split-second exactly how hard to kick a ball so that it lands at the feet of a team-mate who is running towards a spot 60 yards away. Just as footballers possess a remarkable natural sense of physics, so Euan seems to some kind of instinct for division.
Similarly, we have tended to assume that Euan's ability to read was limited to recognising words rather than understanding meaning. That was until he picked up one of his Sesame Street books and read out loud: "Wake up! Wake up always! The sun is all on!" The interesting thing is that these aren't the words on the page. The actual words are in Dutch. What Euan was reading out were his own translations. Imperfect ones, as you might have realised, but translations nonetheless. "The sun is all on" should be "the sun is already up", but the Dutch words for "already" and "up" can mean "all" and "on" in other contexts. So Euan can work out single words and two-word phrases, but struggles with sentences. At least, that's what we'll think until something else happens to make us revise our opinion.
This is not told simply for the sake of parental pride. Euan's intelligence is hard to measure on any meaningful scale and even harder to exploit. His attention span is severely limited, he is hard to motivate and any change in routine or switch of task is met with howls of resistance. But now and again we catch a glimpse of what might be going on behind that glazed expression, and it is a tantalising prospect, like shining a torch into a crystal-lined cave.

Thursday 27 August 2009

Chaos amid order

I came across this painting while on holiday in Germany. Titled Pope Nicholas V Visits the Burial Place of St Francis of Assisi, it was painted by the French-Flemish artist Gerard Douffet in 1627 and depicts (I learned later) a popular legend of the time, which states that when the Pope visited the saint's last resting place in 1449 he saw the form of St Francis floating above his tomb. What fascinates me about the painting, though, is not the apparition of the holy man or the Pope's serene expression, but the fact all around them scenes of unbridled chaos are erupting. A riot is breaking out in church, and the appointed leader of Catholicism seems either oblivious or powerless. (It's worth noting that this painting was created just as the Thirty Years' War was getting going, a savage sectarian conflict that left seven million people dead and large areas of Germany depopulated.)
What has this painting to do with autism? Nothing much, except that at the time I viewed it Euan was creating a chaotic scene of his own. The painting is at the far end of the gallery in the castle of Neuburg an der Donau, a huge hall where Euan delighted in the wide open space. As he ran around, shrieking at high pitch and revelling in the acoustics, the battle to contain him began to look desperate. Then we realised that the gallery attendants were shadowing us in pairs. One of them confronted Magteld as she grappled with Euan and ordered her to silence him. Shortly afterwards they started pointing out the exits, even though we hadn't asked to be shown them. No other visitor, to my knowledge, had complained about him. What a pity that such great art should be in the custody of such small minds.
Being on holiday with Euan was a constant reminder of how he struggles to make sense of the world around him. We did some preparation work, putting together a picture book of what he could expect to see on holiday. That helped us get through the airport: he had no trouble accepting things he'd seen in pictures, such as the hire car (renamed the "special holiday car" in the book), or the holiday home. But episodes such as the one above showed how hard he finds it to be in a strange place. It was particularly noticeable on the day we went to Legoland. Euan had been primed for the trip and loved going on the Lego trains and boats. But after a few hours he looked exhausted, confused and angry. It was as if his brain had used up its capacity to take in new experiences. His eyes looked sluggish and vacant, almost as if he was sedated. He lashed out at the slightest provocation. We left there and then, before the memory was too badly stained.
Euan often acts as if his mind runs on tramlines: if we deviate from a preset route, or go off in an unknown direction, he rapidly becomes anxious. For instance, we drove 100 miles to Nuremberg, then walked 200 yards and sat down at a cafe for coffee and juice. Immediately after that Euan wanted to go home, and protested loudly and repeatedly as we trudged round the city. He thought the sole purpose of the journey was to go to the cafe, and couldn't comprehend why we weren't going straight back home once we'd finished.
For all that, I have fond memories of our holiday. We visited Munich twice, went to Augsburg zoo and Legoland, swam in the local outdoor pool and went walking in the Urdonautal. For Euan the highlights were watching the Simpsons on television (he couldn't care less that it was in German) , going to the local adventure playground and, of course, Legoland. Once we'd been there he wasn't interested in much else and he spent the last four days impatient to go back home on the plane. I could easily complain about his inability to adjust, but when I think of how hard he tried to make sense of the blitzkrieg of new experiences, I can only admire him. Where we soak up the novelty and excitement of the bustle of a strange place, to him it must seem as chaotic and disturbing as the scene in Douffet's painting.

Monday 6 July 2009

Gary McKinnon

Something quite unaccountable happened today. I crossed off one of the items on the list of "things I never thought I'd do," in between abseiling off the Eiffel Tower and buying tickets for a jazz concert. I signed a petition on the Daily Mail's website.
The petition in question calls on the Home Secretary to drop the extradition case against Gary McKinnon. As many people know, McKinnon faces trial in the United States for hacking into Nasa's computers while searching for evidence of UFOs. Initially he was charged under the Computer Misuse Act, offences which he admitted and expected to be sentenced for in a British court. Then, all of a sudden, the Bush administration decided it would rather make an example of him. Two US states sought his extradition for causing $700,000 worth of damage to computer systems. Prosecutors accused him of perpetrating "the biggest military computer hack of all time " and openly expressed their wish to see him "fry". The rhetoric became more belligerent. Mark Summers, an official representing the US government, told Bow Street magistrates considering his extradition that McKinnon's actions were "intentional and calculated to influence and affect the US government by intimidation and coercion."
Throughout this time, Osama bin Laden was roaming the mountains of Pakistan, unimpeded save by his kidney dialysis machine. Meanwhile, the most powerful nation on earth was hunting down and smoking out a lone unemployed middle-aged hacker, sitting up all night in a suburban house in London looking for aliens, and being so careless about covering his tracks that he left signed messages on the hard drives he infiltrated, sent from his own e-mail address.
There was clearly something not quite right about Gary McKinnon. He quit his job and split up with his girlfriend as his fixation on UFOs deepened. His dope smoking got out of control. He said: "I'd stopped washing at one point. I wasn't looking after myself. I wasn't eating properly. I was sitting around the house in my dressing gown, doing this all night." (see BBC News) In hindsight, it's a wonder he reached the age of 40 before being diagnosed with Asperger's syndrome.
There can be little doubt that his disability was a decisive influence on his behaviour. With nothing to temper his obsession, it gradually overwhelmed him. The extradition proceedings should never have come this far. The fact that, having been diagnosed and received counselling, he has come to understand the wrong of what he has done, ought to satisfy any sensible government that he does not pose a threat to global security. He deserves an appropriate punishment for his crimes, but not to be locked away in a foreign country until the end of his days. If the Americans had any sense, they'd give him a job. He'd probably be the most diligent, loyal employee they've ever known.
As for the Daily Mail, it's only six months that the newspaper published this notorious op-ed piece by Carol Sarler suggesting that autistic children should be aborted before birth. Now it's gone from excluding autistic people from its general prohibition on abortion to championing their human rights. The sea change is quite startling, and welcome. They have made a calculated risk that will alienate some of their readers, but no doubt they decided that the opportunity to poke the Home Office with a sharp stick, combined with the chance to support a helpless British man in his struggle against a foreign court, made it a cause worth defending. Credit must go, too, to Gary's mother, Janis Sharp, who has worked tirelessly to maintain the vigil for her son.
It's a distinguishing feature of a humane society that its institutions should be able to deal with the disabled. I still believe that there is a sense of humanity at the core of this government. If Gary McKinnon is extradited, I shall have to accept I was stupid and naive.

Thursday 21 May 2009

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.

Wednesday 6 May 2009

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.

Wednesday 29 April 2009

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.

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.