Saturday 27 December 2008

Unwrapping another layer

Christmas can be a good measure of progress in children. This year Euan didn't want to open his presents. That was a step forward from last year, when he didn't want to be in the same room as them. The reason, with hindsight, was simple and a classic piece of autistic logic: we'd talked to Euan about Christmas lunch, cooked the turkey and set the table - and then gone into the living room to open presents. And in his mind he must have thought: they've promised me a slap-up feed, so why are they wasting time in the wrong room tearing paper off strange boxes?
This year Euan was happy to be among the boxes, but took no interest in them until someone else had taken off the wrapping. It was striking that his favourite presents were things already familiar to him: an Elefun game that one of his friends has, and a set of reading books he knows from school.
Euan's progress is erratic, unpredictable, alinear, but it is progress nonetheless. Every step along the way is a minor triumph. What's heartening is his determination to learn things that don't come naturally to him. When he started school it was unimaginable that he could do something as demanding as perform in a drama, yet last Tuesday he "sang his heart out" (Magteld's words) in the school nativity play chorus. In the first rehearsals Euan was distracted by the noise and struggled to follow the script, but as they practised more and the story became familiar, he became more comfortable. As it turned out, rehearsing a play over and over from start to finish played to his strengths: his remarkable memory and his ability to learn in sequences. The same faculty has helped him to learn the alphabet and to read books from cover to cover.
It also characterises his speech. Euan is getting better at asking for what he wants, but still can't really string a sentence together. Here's a conversation we had yesterday:
Euan: "I want some toast". (This is a good sentence, using 'some', an indeterminate quantity, in the right place. It's only in the last few months he's been doing this).
Me: "No, Euan, it's not time for toast. How about a roll?" I hold up the roll to show him.
Euan: "Yay! Roll! 'r', 'r'!" (rolling the r to show he's thinking of how to write the word).
Me: "What do you want on your roll? Cheese?"
Euan: "No, there's no cheese in the house. I need jam."
That last part needs a bit of decoding: what Euan actually meant was: 'I don't want cheese'. He's heard me say "There's no jam/cheese/peanut butter in the house" when we've run out of something, but it seems he understands it to simply mean a wrong choice. It's a classic piece of Euan-speak, taking a set phrase he's heard and trying to apply it, but not quite getting it right. (Using "need" to mean "want" is another example.) This way of using language in chunks makes it hard for him to string a sentence together or hold a conversation, but it still represents a giant leap forward and a huge effort on his part.

Saturday 6 December 2008


A cause for minor celebration: after three months of anxiously waiting and fearing the worst on our part, Euan's Disability Living Allowance comes through. It's the end of an exhausting and nerve-racking process whose keytone has been to expect the worst.
The anecdotal evidence amounted to a slurry of arbitrary decisions, torturous panel hearings and questions that would have poleaxed the Sphinx. "Everybody gets knocked back first time" was a phrase that became as familiar as a patch of mould on the bathroom ceiling, and indeed, as we spoke to people, a pattern seemed to emerge: you fill in your application form, wait a few months, receive the rejection letter, appeal to the appeals panel, sit in a room facing a forbidding-looking triumvirate of grim-faced civil servants, sweat another few months, and eventually pull off an against-all-odds victory. So when we were told we would be exempted from this merry-go-round, the relief was palpable.
The first step is to fill in a 40-page form, which is so daunting and bafflingly worded it must put many people off right from the start. (If we found it confusing, how must it be for someone with a basic level of literacy, or whose English is rudimentary? Yet these are often the people who need the money most urgently.) We had invaluable help from our local autism support group, yet even so, it took four nights to complete the form - four exhausting nights when we wrote until words failed us and we slunk off to bed emotionally drained. At the very time when a chorus of experts and source books were encouraging us to focus on the positive aspects of Euan's diagnosis, to work to build a viable future for him and for ourselves, and to appreciate the child he is rather than mourn the child we never had, here was a form asking us to detail in bald terms the worst, most debilitating consequences of his autism. In short, to measure the unfathomable. It asked us to describe an "average day" - belying the fact that the problem with autistic children isn't the average days. The average days, when everything goes by the set routine, are fine. You can almost forget your child has a problem at all. The times when you need help are the days that break the routine: going away on holiday, visiting family, wearing a new pair of shoes, deviating from the normal shopping list in the supermarket, and so on. We were advised: "describe the worst day possible." It didn't quite go that far, but we did have to detail, in unsparing and unflinching terms, the severe effects that these breaks from the norm can trigger. So being told we would not have to reapply until Euan's 11th birthday was a double dose of relief.
It's not just about the money, though that does come as a comfort and will enable us to give Euan all kinds of support we would have struggled to fund by ourselves. DLA is also the most widely accepted official recognition that your child is disabled - a stamp of approval that opens other doors. If I were advising anyone else applying, based purely on my own experience, I'd say the following: include as much official paperwork as you can - your diagnosis report should be top of the pile, along with any assessments you have from educational psychologists and therapists - be honest but unflinching about your child's condition (in other words, don't be shy to spell it out), and be very, very patient. It worked for us.

Sunday 16 November 2008

A whole-life condition

Two weeks ago I was invited by the National Autistic Society to attend a reception for people connected with autism at the City Chambers in Edinburgh (the prompt for this was my fundraising 10K run, which eventually raised £1,135 for the NAS, so thanks to all who donated). There I met other parents whose circumstances differed appreciably from our own; in particular two mothers whose children were now grown up. Two things came out of this: firstly, how thankful we have to be that we weren't having to steer Euan through childhood 20 years ago, when the prevailing mood in authority was to marginalise or deny the existence of autistic children; but also, counterbalancing that, a realisation that his development and prospects are largely out of our hands. And with it comes a numbing sense of helplessness that can be difficult to suppress.
It starts with the understanding that autism is not a condition children recover from. They may, with a little luck and years of application by themselves and their carers, learn to function in social circumstances, perhaps even live independently. But the odds are stacked against them. I learned of a young, intelligent man in his late 20s who lives in a Steiner community. In many ways it's an ideal scenario for him: he is free to come and go, has a job on site that keeps him occupied, and is able to indulge his obsession with books undisturbed. Every few weeks, boards the train to visit his parents - at which point somebody has to remind him to pack his toothbrush and pyjamas in with his books. He's happy, his parents are content, but they've taken a long and torturous road to get there.
Raising autistic children, in short, requires a wholesale readjustment of their prospects. Suddenly the future is not about which university to send them to, but about whether they'll ever be able to hold down a job. Or enjoy a relationship on equal terms. Or even leave the house. When Magteld and I decided to have children in our twenties, part of the reasoning was that we would still have plenty of good, healthy years to look forward to once they were grown up and independent. We looked forward to helping them decorate their first homes and meeting their partners. Now we need to face up to the very real prospect of Euan living with us until we're too old to care for him. And the idea of him having to be taken into a care home in his forties or fifties to live out the rest of his days is truly terrifying. Particularly when we look at him now, as an engaging, quirky, self-contained little boy with an infectious giggle who can absorb himself tirelessly in a story or the sequence of the alphabet, and realise that the matter of whether he'll ever adjust to society is largely out of our hands. At times like this, the future looms like a giant black hole.

Sunday 5 October 2008

The consolation of genius

After a while, "spotting" autistics in the street, or among friends and colleagues, or on the television, becomes a kind of obsession in itself, a party game similar to the "who is a Jew" game I once read about. (It's not as sinister as it sounds: the writer was a Jewish-descended journalist who, on meeting other Jewish-descended journalists, liked to swap notes on celebrities whose Jewish background was mostly unknown. At the root of this ethnic Top Trumps was a kind of implicit community pride: see how our community has achieved so much that even we don't know the half of it).
Fictional characters are even better: since they can't be conclusively tested or diagnosed, the possibilities are limitless. My list includes Stephen Dedalus, Prez in The Wire, Alan Partridge and The Incredible Hulk (for his limited language skills, poor eye contact and raging tantrums).
As Paul Collins notes in his perceptive book Not Even Wrong, which I recommend to Autistic Dads (and Mums) everywhere, the names at the top of most people's lists are Isaac Newton and Einstein. Not far behind come the likes of Mozart, Vincent van Gogh and Andy Warhol. It's often the first thing you hear when you breach the subject of your child's condition: a sincere, well-meaning comment along the lines of "oh, but Mozart was autistic - you've probably got a genius on your hands." Yet as well-intentioned as this kind of statement is, it betrays two conceits: firstly, that exceptional talent, rather than happiness or social aptitude, is the highest ideal that parents can aspire to for their children; and secondly, that developmental disorders such as autism, or mental illness, can be offset against individual genius: that there is some consolation in genius, since it's the quality that is most likely to endure after death.
It's a hangover, though people would be horrified to acknowledge it, from the old Victorian Bedlam attitude to mental disorders. Display a "savant" ability and you would be indulged, often over-indulged, often at the cost of your own personal well-being; show none, and you were condemned to a life in the madhouse. Just consider the statistical implications and you soon realise that even among the autistic population, geniuses of world renown make up only a tiny proportion of the whole. Autism, by and large, has meant isolation, loneliness, a high chance of mental illness and, until recently, widespread institutionalisation. And let's not forget what being one of these feted genius entailed: Mozart drove himself into an early grave at 35, his obsessive work schedule at odds with his fragile health; Van Gogh suffered from paranoia and depression, and eventually shot himself, and Warhol's private and public demons are well documented.
I will leave the last word to Paul Collins: "There are Newtons of refridgerator parts, Newtons of painted light bulbs, Newtons of train schedules, Newtons of bits of string. Isaac Newton happened to be the Newton of Newtonian physics, and you cannot have him without having the others, too."

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.

Monday 11 August 2008

After the quake

In the weeks since Euan's diagnosis I have come to think of our family as akin to a city hit by an earthquake. In case the comparison seems disproportionate, I should make clear what I mean: autism was something we didn't anticipate and were unprepared for, something which ruptured the foundations of our family life and transformed its landscape utterly. Until we came to terms with the shock and dealt with its immediate aftermath, we would languish in grief and confusion. Of course, taking care of the aftermath didn't involve anything as harrowing as removing broken bodies from the rubble of buildings, but in a fundamental sense we had to accept that our lives had been changed for ever by an external force.
The emergence of Euan's autism was bound up with a period of turmoil in my own life and well-being. To invoke the quake metaphor again, it was only once we started to clear the debris that the connection became clear. At the time all I understood was that the life I had aspired to, the middle-class dream of a house, a marriage, a steady job and happy, healthy, smiling children, had turned sour. Instead we had a child we hardly understood, who frequently left us exasperated as trips to the shops or the park became a series of small battles for his attention. Euan learned how to operate the CD player, and then played his favourite CDs over and over again until he knew them by heart. Once he did he would spend large portions of the day standing in the kitchen singing to himself, only pausing to eat or go to bed.
Things came apart at the seams. When I wasn't feeling a failure as a father, I was querying Magteld's methods ceaselessly, first in my mind, and then to her face. She responded by becoming angry and withdrawn; weeks went by when we hardly spoke. I began to seek refuge in the office and regarded weekends as short, sharp prison sentences, to be endured rather than enjoyed. Everything I had once cherished, I now resented. I devised increasingly fanciful ways of escaping my straitened family circumstances, while Magteld's thoughts were occupied with plans to go back to Holland with the children and start a new life there. We stopped just short of splitting up; a generation ago, when autism was less readily acknowledged or understood, we certainly would have done. But the whole episode affected our relationship and our mental health in ways we once would have thought ourselves immune from.
Many cities, in rebuilding after an earthquake, reinvent themselves in spectacular ways. The catastrophic event forces them to confront the shortcomings in their civic life and gives them the impetus to undergo bold and ambitious regeneration schemes. Devastation is a catalyst for revival. I feel the same principle can work for families such as ours. Since we began to accept Euan suffers from a neurological disorder, and especially since he was diagnosed, we have begun to adjust to the new demands in our lives and been able to look to the future without being overwhelmed by fear. The aftershocks will be felt for some time yet, but the foundations are still in place. The challenge is to go back to the drawing board and build anew.

Wednesday 30 July 2008


I had prepared myself for most aspects of Euan's diagnosis, but not for the overwhelming sense of grief that followed it. It was a grief that had stalked Magteld and me throughout the diagnostic process, but for the most part we had shunned it like owners of an errant dog. Now, finally, it was out in the open and we had no option but to come to terms with it.
Two linked questions preoccupied me: where did this grief come from? And, more pointedly, what right did we as parents have to grieve for a child who was alive, healthy and contented?
I found the basis for an answer to the first in Jim Sinclair's essay, Don't Mourn for Us. Sinclair is an autistic man who was unable to speak before the age of 12, yet now travels the world speaking at seminars on the condition. "Autism is not death," he wrote. "Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child... It isn't about autism, it's about shattered expectations."
Sinclair is right, but his essay is far from being a straightforward admonition of parents who grieve for their autistic children. His remarkable insight into the thought processes of parents, if nothing else, nails the lie that says autistic people are incapable of empathy. Calmly, dispassionately and precisely, Sinclair dissects the impulse to grieve and, importantly, identifies it as a normal and necessary stage in coping with autism in the family.
I freely admit to belonging to that class of people who don't share many of the values of Norman Tebbitt. It's almost an article of faith for me to assume that material aspirations are the product of a limited intellectual capacity. And yet what we grieve for when grieving for an autistic child is, as Sinclair says, not the child we have, but the child we aspired to have - the school reports, the exam certificates, the university degrees, the girlfriends and grandchildren they would bring home, all of it suddenly plunged into darkness and uncertainty by the spectre of autism.
Sinclair makes no secret of the fact that this grief, when allowed to fester, can be insulting and damaging for the child. But he also, I think, recognises that grief is fundamentally a healing process, the first stage on the difficult road to reconciliation. His anger is directed not at parents who grieve, accept their loss and learn to deal with the child they have, but at those whose grief runs to despair, who see themselves as victims and seek to apportion blame, who fail to realise that autism is not death, but a way of life.
Euan has never told me what his favourite food is or asked why the sky is blue. That is really what I grieve for when I grieve over autism. But at the same time, I have started to understand that grief is not despair. And autism is not death.

Read Jim Sinclair's essay Don't Mourn For Us here

Friday 18 July 2008

The verdict

It felt for all the world like being given the results of an exam in a subject we knew nothing about. The three people sitting on the other side of the small, round table were all experts who had devoted their careers to the development of autistic children. Opposite them were Magteld and I, whose understanding of autism could best be described as hazy. Yet it was us who had been given the responsibility of raising an autistic child. All they could do was proffer advice.
The doctors did an immaculate job. They guided us calmly and clinically through the intensive three-day assessment that Euan had undergone, which had led, after much discussion, to the conclusion that Euan is classically autistic with some learning difficulties. We heard how Euan had struggled to understand complex instructions; how he had preferred simple toys to more complicated one; how he had been almost oblivious to the presence of other children. How he had focussed on a narrow range of interests, mostly to do with numbers, to the total exclusion of anything else that might be going on. All of these were things we had observed with our own eyes on countless occasions, yet to hear it from a dispassionate trained observer was somehow far more unsettling.
It was the mention of learning difficulties that knocked me sideways. It's a phrase that has you fearing the worst: will my child ever be able to look after himself? Galling to think that a generation or two ago, this discussion might have ended with a recommendation to commit Euan to an institution, where his life would effectively have ended. Thankfully these days the emphasis has shifted. So Euan will enter mainstream school in August and stay there for a few months, after which a further assessment will be made. He may end up being taken out of primary school into a more specialist environment, but even this is no longer the dead end it might once have been.
At the end of the session I asked a question I had to wrench from the back of my throat: how severe is his autism? I had to ask, because while the discussion had been strong on detail and suggestions for how he could be helped, it lacked a focal point. "He's quite severe" was the short answer - severe in his learning disabilities and his social interaction, though his behaviour was less of a cause for concern.
It was hard to know what to think after the diagnosis was given: it was broadly what we expected, yet still felt like a punch to the stomach. For several hours we were barely able to look at each other. Magteld took Adam out, Euan watched Toy Story 2 for the umpteenth time, and I sat on the stairs and cried. Once Magteld came back I went for a six-mile run. Only then did I feel ready to face up to the daunting new future that we had been prescribed.

Sunday 13 July 2008

Diagnosis D-Day

It's no accident that the last couple of entries have ended on a defiantly upbeat tone. Because tomorrow is the day that Euan begins the process of being formally diagnosed for autism. It has been the dominant event on the horizon for the last few weeks, ever since the date was confirmed by the local Community Autism Team. And although it's the event we've been impatiently waiting for ever since we first heard the word autism used in connection with Euan, the sense of dreaded anticipation has been oppressive. It's like waiting to sit an exam for which you can't prepare, but whose outcome you know will change your life for ever.

It has taken the best part of 18 months to reach this point, since the day last winter that the nursery suggested calling in the educational psychologist. We took their advice, booked in a session and waited. The first seeds of anxiety were planted in our minds: nobody was saying the word autism at this point, but I had my suspicions. The few people I raised the issue with seemed almost at pains to scoff at the suggestion: "He's not autistic, he's just a happy child," they would splutter. And in many ways that's exactly what Euan was: a happy child who would sit and sing or play by himself for hours on end. The problem was, he was happy in a hermetically sealed world that nobody else was invited into. And the more Magteld and I tried to draw him out of it, the more he resisted, withdrew and flew into rages.

A diagnosis is a significant event for all kinds of reasons. It's the end of one road, as well as the start of a new one. It should, finally, give us some concrete answers from a team of trained specialists, rather than the cautious, circumspect suggestions we've had so far (that's not meant, incidentally, as a cricitism of the therapists who have seen him so far; indeed, it's to their enormous credit that nobody has tried to jump the gun and declare unilaterally that he is 'definitely' autistic, even though that's the answer we've been craving at times). It will open doors to support services, social workers and disability allowances that suit his needs. And it will put to bed, once and for all, those nagging doubts that still flap around our heads, that perhaps he's not autistic at all and we've just made some appalling misjudgement in our approach to parenting.

So given the potential for relief, why the sense of dread? Perhaps because a final answer is just that: final. The last hopes that he will one day wake up a "normal" child will be extinguished. Being confronted with the knowledge that this is it: that the next 15 years of our lives, at least, will be dominated by the challenge of teaching someone to function in ways that are uncomfortable, and at times utterly alien, to them, is a daunting prospect.

Tuesday 8 July 2008

New perspectives

In the supermarket the other day I found my way blocked by a woman pushing her elderly mother in a wheelchair. The old woman was looking at the floor and muttering to herself, barely aware of the world around her. The daughter was straining to engage her in choosing what type of dessert to buy from the yoghurt section. Eventually, after several attempts, she interpreted a downcast grunt as signifying a desire for strawberry flavour. As I tried to make a discreet lunge for the creme fraiche, she looked up at me with drawn, bloodshot eyes and meekly apologised.

A few months ago I might have hastily grabbed the tub of creme fraiche and bustled along the aisle asking myself a dozen questions about why she bothered to take her mother shopping, because clearly the doddering old fool barely knew what time it was, never mind what type of yoghurt she'd like. But now I connected with her, at least fleetingly, as someone looking after a disabled relative, determined to maintain as normal a life as possible even when it seems to rub against logic. Besides, it's much harder to be scathing about other people's disruptive habits when you've seen scornful cast looks at your own child because he insists on touching every can of beans in the aisle, or stops to line up the paracetamol boxes at the chemist's counter.

Here's one of the unforeseen side-effects of having an autistic child: it's made me a more tolerant person. The more I learn to cope with Euan's behaviour, the more I appreciate how many other people out there are managing to get by in spite of neurological conditions, traumatic backgrounds, bouts of mental illness or physical disabilities. And it's not a question of "overcoming" these problems: people with dementia, say, will never overcome their condition (indeed, it will eventually overcome them), but that doesn't mean that those little acts of kindness that make their lives more bearable are pointless or unappreciated.

And there's a social dimension, too: in joining autism support groups we have met all kinds of different people who have been thrown together by a quirk of genetics. As you get older it's easy for your focus to narrow: to seek the company of people with the same social status and attitudes as yourself. In a perverse kind of way, having a child with a disability is an antidote to that, because it interferes with the ability to choose your associates. In the French film Le Huitieme Jour, a professional man moulded into a high-achieving routine realises what a narrow groove his life is stuck in when he has to look after a man with Down's syndrome.

So if I were a politician, this would be my manifesto pledge: everyone should be compelled to spend one day a month with a disabled person. I believe it would spark a benign revolution in people's social understanding. And make supermarkets much more pleasant places to shop in.

Monday 30 June 2008

The third generation

"Grandparents are the worst," a therapist told Magteld last week. According to this view, grandparents have an even harder time than parents in coming to terms with autism in the family. They deny the condition, struggle to understand it and quibble endlessly over its causes. I am aware of one heavily active campaigner who clings tenaciously to the almost wholly discredited theory linking MMR to autism and posts messages to medical websites declaring as his area of expertise: "grandfather of an autistic boy" (a courageous stand, but perhaps a foolhardy one given that most other contributors can boast a string of letters after their names). I can see a lot of truth in this statement, but ultimately I think it disparages the vital work grandparents can play in bringing up autistic children.

In some ways autism must be even harder to accept and understand at a step's remove. Both our parents live at a distance - mine in Norfolk, 400 miles away, while Magteld's are even further away across the sea in Holland. They see the children perhaps half a dozen times a year. Euan is unable to speak to them on the phone. So their understanding of his development is bound to be fragmented.

Now consider that for most of their lifetimes, autism has been a marginal condition which was diagnosed only rarely. It has only recently become the prevailing view that it is a genetic condition (later in this blog I want to address the whole issue of the causes of autism, but it's enough for now to note that during our parents' youth, when psychoanalysis was the dominant theory, it was commonly believed that autism was the result of a lack of maternal affection, something that must have deeply scarred a generation of women). Nowadays when a child shows signs of autism, the first place the parents look for clues about its origin is back up the family tree - in my case, towards an uncle who has been retreating into himself for the last 30 years and whose sense of isolation has gradually engulfed him like ivy spreading over a withered tree.

So the grandparents have to contend with the idea, firstly, that their grandchild is not the kind of laughing, bounding, affectionate small person they sentimentally remember from their own days as parents (and didn't we, as children, always look so excited when we went to visit grandma and granddad?), and secondly, that it might somehow be their own fault. It's no wonder they find the whole concept hard to swallow. Older people are often fearful of change, but they balance it with another quality that is often overlooked: resilience. They may struggle to understand Euan's condition, but the patience and energy they invest into trying to engage with him has been awe-inspiring at times. They have persevered in situations that bring Magteld and I to the brink of despair. It's a less scientific, more intuitive kind of understanding, perhaps, but it's one that can break down boundaries.

Sunday 22 June 2008

The sibling factor

Euan has a younger brother, Adam, who is nearing his third birthday - roughly the age that Euan's difficulties started to become apparent. So far there has been nothing remarkable about Adam's development: he talks like any other two-and-a-half-year-old, probing the mechanics of language as if it's a shiny new gadget and beaming with glee when he produces a fluent sentence. He looks people in the eye when they talk to him and displays no obsessiveness in his play or his behaviour. Yet autism is an issue for Adam too, and will increasingly be so as he and Euan grow up together.

The gap in the brothers' ages - two years and four months - is commonly seen as ideal. Certainly at the moment they get along famously, whether rolling around on the living-room floor, singing songs together or scrambling over the climbing frame. At the moment Adam is utterly unaware that Euan is different from other children; in fact, Euan's restricted communication mean that in many ways they operate on the same level. Some time after Christmas we noticed Adam was pulling ahead in his language and using more natural forms of speech: whereas Euan repeats things he has been told mechanically, Adam is able to adapt what he hears and employ it to form his own sentences. Imagine giving two children the same Lego set: one of them constructs and dismantles the design on the box again and again, while the other shakes the bricks onto the floor and uses them to create his own things. That's more or less the difference in Euan and Adam's language.

Because he is unaware of Euan's condition, Adam sometimes copies his older brother's autistic habits. When Euan goes downstairs in the morning and wants to play in the living room, he bangs on the door until one of us comes down and opens it; the other morning Adam did the same thing, believing, perhaps, that because we don't tell Euan off about it, it must be the right way to ask. Yet the bigger worry is what happens when Adam does start to notice that Euan is different from other children. Will he shun his brother in the school playground, or protect him? When he reaches his teenage years, will he resent his brother for being different, or feel constricted by the association? Will we, as parents, lean on him too much to look out for Euan - who is, after all, the older brother?

And which will be the greater danger: neglecting Adam in the struggle to attend to Euan's needs, or overloading him with expectation as the "normal" child? At the supermarket this weekend Adam delighted in his new-found ability to "surf" on the side of the trolley as I pushed it along. "I'm finally finding out how a two-year-old is supposed to behave," said Magteld with a wry smile, reminding me that "normal" children provide plenty of challenges too.

Tuesday 10 June 2008

Caught off guard

One of the hardest things to convey about autism is just what makes it so distressing. To outsiders, exposed to small doses, it might seem like a relatively mild condition: the child doesn't suffer from any physical impairment or mental retardation, so surely it can't be all that bad? A lot of the time it seems as if the child is simply a bit awkward: stubborn, set in their ways, reluctant to communicate, but basically functioning well. In fact, when their routines are well established, it's easy for the parents themselves to fall into this way of thinking and start to let their guard drop.

We learned a lesson in this regard a few weeks ago while staying with Magteld's parents in a small village in Holland. On the day before we left Magteld went to the supermarket with Euan's younger brother Adam, leaving Euan with me in the house. He seemed to be playing happily by himself with the CD player, in his usual fashion, so I went outside to make a phone call. When I went back into the house a few minutes later the music was still playing, but Euan was nowhere to be seen.

I took my father-in-law's bicycle and cycled round the village in a frenzy, eventually finding Euan in the supermarket, standing in his socks and clinging anxiously to his mother's leg. He had seen Magteld walk past the front window with Adam in the buggy, panicked and ran out after her. One of the villagers found him in the car park, visibly distressed and crying out "mama", and taken him into the shop.

It's always upsetting - and, of course embarrassing - to lose a child in public, but this episode brings out some of the differences between autistic and "ordinary" (some use the term neurotypical) children. Euan was left disoriented and distraught by a minor change to his routine: Magteld left the house without saying goodbye. Instead of finding me in the garden, he blindly followed his mother down the street in his socks, crossing two busy roads on his way to the shop (he knew the way from previous trips with his grandparents). And at the age of five, he used baby language to communicate the fact that he had lost his mother.

And this highlights one of the most distressing things about autism: the way seemingly minor deviations from the norm can leave the child suddenly helpless and vulnerable. Euan seemed settled in his grandparents' house, yet he was disoriented by a tiny alteration to his routine and was barely able to communicate his distress to other people when he got into difficulty. Thankfully he was in a small village where the traffic was light and a kind-hearted stranger took him to his mother, and the panic was soon quelled. Yet it brought home how much autistic children are attached to the "comfort zone" of home and routine, and how quickly things can unravel when they are removed from it.

Sunday 11 May 2008

Relief and reality

Relief might sound like a strange response to the news that your child has a lifelong, potentially debilitating condition for which there is no cure. But that was exactly how Magteld and I reacted to the news. It was as if we had been fumbling around in a darkened room for four years and suddenly somebody had switched on the lights. We understood for the first time what we were dealing with.

There is widespread resistance among teachers and carers towards labelling people, particularly when it involves young children. The sentiment is well meant, and in the sense that it's a reaction towards the historic tendency to define people by their limitations rather than their capabilities it's well founded. But as Clare Sainsbury, who has Asperger's Syndrome, comments in her excellent book Martian in the Playground, "someone with undiagnosed Asperger's still has Asperger's" (the difference between autism and Asperger's is hazy, and most professionals seem to treat the two as different manifestations of the same condition). For us, a label wasn't a branding iron but a key to understanding Euan's behaviour.

When the nursery first raised the subject, autism was one of the first things that cropped up in our minds. We considered it, and dismissed it. We were aided in our denial by well-meaning friends and relatives who reassured us that Euan couldn't be autistic because he was obviously intelligent, or remarked that he was just a happy, self-sufficient little boy. Neither of these, as I now know, precludes autism.

As perverse as it sounds, it was easier to deny the truth and look for some deficiency in our child-raising techniques than to accept the reality of having to care for an autistic child. Magteld and I blamed ourselves and blamed each other; we tried to shake Euan out of his entrenched routines and his closed world, sometimes literally. We waited with growing impatience for his speech to catch up with other children of his age. We felt ashamed every time an adult spoke to Euan and he looked up at them blankly, or when we watched him at birthday parties, standing mutely at the side of the room or absorbing himself in the workings of the CD player while other children joined in pass the parcel. His interests became obsessions, sometimes built around intricate and meticulous routines, and any attempt to divert from them triggered a storm of protest. The plain truth is, we barely knew our own son.

When I say that autism is incurable, I don't mean in the sense that science and technology haven't quite round to overriding its effects, and it's just a matter of waiting. My belief is that autism is incurable because one cannot simply isolate and remove the autistic element from someone's neurological system. For an autistic person, autism is their system. It can be managed and alleviated, but never "cured". For this reason, having the right label is crucial to our chances of bringing up Euan successfully.

Sunday 4 May 2008

First reaction

The first person to use the word autism in connection with Euan was his speech and language therapist. I will never forget driving to the clinic to pick him and Magteld up after his first session. Magteld came out clutching Euan in one hand and a blue folder in the other, wearing that special smile she reserves for awkward social occasions.
When she got into the car I saw the words "autistic spectrum disorder" on the cover of the folder. She told me later she had burst into tears when the therapist raised the possibility at the end of the one-hour session that Euan might be autistic. At the time, all I could feel was a numb sense of bewilderment.
What are the emotions that autism gives rise to in the family of an autistic child?
There is, first of all, an overriding sense of fear. A fear of not being able to cope. A fear of not knowing what to expect. A fear that your child might go through their whole lives as a kind of alien, unable to comprehend the basic social functions of life. A magnified fear of failure: think of the anxiety all parents have that they might not be up to the task of equipping their child for adulthood, and multiply it by 100. A fear that your child might never be able to live independently of you, and a fear that there might be no-one to look after them once you're gone. A fear, all in all, of the unknown, in your life and in theirs.
There is also grief - specifically, what Magteld calls grieving for the child we wanted Euan to be. When Euan was a baby, we looked forward to watching him thrive and flourish as he trod the familiar path of childhood: walking, talking, inquiring, challenging, reasoning, understanding. Then, somewhere in this process, things became stuck. We watched other children learn to talk, ask questions and hold conversations with their parents. We reassured ourselves that Euan was simply a "late developer"; that as a bilingual child (English and Dutch) he would catch up before long; that he was otherwise a bright boy, so it was surely only a matter of time. Being told he was autistic extinguished these hopes: what we thought was a slight kink in the course of his development had turned out to be a shift of direction towards a new and alien landscape. Before we could move forward with raising him as an autistic child, we first had to let go of all our expectations of how his childhood should progress. It is hard to overstate just what a seismic shift this is.
The fear and the grief had their by-products: anger, self-recrimination, helplessness and despair. There were times when it looked as if the cumulative effect would sink our marriage. But there was also relief at finally having a label for Euan's difficulties and a first substantial clue towards solving the puzzle.

Sunday 27 April 2008

The first signs

The first signs of Euan's autism weren't confined to the nursery environment, but it was at nursery that they were most apparent. His interaction with adults and other children was minimal: he would play happily on his own with toys or books (the book corner was a favourite haunt) but it was almost impossible to engage him in group activity. When he was potty training he wouldn't tell anyone when he needed the toilet, so at first he wet himself like other children; but once he had mastered the mechanics of going to the cubicle, taking down his trousers and excreting, he would simply take himself off without announcement and return with just as little ceremony. The first anyone would know that he had been was when the next person went in and saw the evidence (unfortunately, washing his hands afterwards is still not an established part of the routine).
More seriously, when Euan was attacked by another child (a mercifully rare occurrence) he said nothing: he didn't even cry. It was only much later in the day that a member of staff spotted the large mark in his face – and, of course, Euan was unable to explain what had happened. The thought that your child is unable to defend themselves, either during or after the event, is a profoundly worrying one, particularly as they approach school age.
My wife, Magteld, and I denied the signs at home for a long time. The fiercely competitive sport that is bringing up small children does not easily admit the suggestion that your child might be in some way abnormal. I remember Euan at a birthday party at the age of two: while all the other children joined in a game of pass the parcel, Euan's interest was entirely taken up with watching the CD player that the music was playing on. On a visit to my parents a few months later, Euan became interested in watering cans: he took a can to the water butt in the courtyard, filled it up, then poured the water very carefully into an empty flower pot. He repeated this routine over and over again, seemingly absorbed in studying the flow of the water from the can into the pot.
Euan has taken an obsessive interest in numbers since he was very small. For his fourth birthday my parents bought him a blackboard. Once he had been shown how it worked, he picked up a chalk, handed it to me and said: “number one.” He showed no interest in watching people drawing or scribbling on the board, or doing it himself: the only thing he wanted was to see the numbers written in sequence, from 1 up to 99, which was as far as he could count. Or so I thought. The next time my parents were staying with us, Magteld and I got back from a shopping trip to find Euan effortlessly reading off three-digit numbers which his grandfather had written on the board.

Sunday 20 April 2008

My name is Gordon Darroch. I am the father of two children.

About a year ago we began having our elder son, Euan, then approaching the age of four, assessed for difficulties in his social development. He has always been a quiet, self-contained boy, rarely aggressive or anxious, happy to play by himself but equally content in the company of other children. His intelligence was normal and he seemed to be thriving at the nursery he had been attending since he was 10 months old.

But now the manager was telling us he showed little interest in the other children: he would play alongside them, rather than with them; if the nurses managed to persuade him to join in a group activity, he would quickly drift away back into his own world. And he rarely spoke. It was as if he was enclosed in a bubble: he could look out, and others could see in, but actual contact was all but impossible.

“Are you worried about him?” I asked the manager.

“A wee bit,” she said. It was the fairest answer she could give.

So began the long, exhausting and still unfinished process of having Euan assessed for autism. Even now I hesitate to use the words “Euan is autistic” to people because an actual diagnosis is still some way off. But the odds are shortening. Every specialist who has seen him so far has observed autistic traits in his behaviour, but the difference between suspecting your child has autism and having it diagnosed are as wide as the autistic spectrum itself.

This is intended to be a blog about living with autism in the family. Unlike some, I am not particularly interested in trying to work out who or what might be to blame for my son’s condition or whether it could have been avoided. The irrevocable fact is, it exists, and my prime concern is to learn how to deal with it.

There is a danger, too, of becoming so consumed with Euan’s condition that we end up seeing the condition and not the child. It’s true, as people often say, that there are worse things that can happen: he is not terminally ill or severely handicapped; his intelligence seems to be unaffected; he does not have a shortened lifespan, which I think must be the hardest thing for a parent to face. But at the same time, there are a lot of popular misconceptions of autism that lead people to dismiss it as just a mild hindrance, like walking with a limp or learning with dyslexia.

Perhaps dyslexia offers the most meaningful parallel: a generation ago, whole swathes of children were labelled as stupid, lazy or ill-disciplined when a little understanding and assistance could have saved them from a lifetime of under-achievement. I hope that with the right intervention and support Euan will be able to enjoy an independent and fulfilling life, rather than being written off as weak-willed and socially inept, as such children once were.