One or two of these categories – toys and sweets – are brightly wrapped or brightly plastic enough to promise a familiar pleasure, and most children readily succumb. Joe is seldom tempted. Other intransigencies, such as his unwillingness to try new food or new activities, are familiar to many parents, though some will be overcome by childish curiosity. In Joe’s case, no such counterbalancing imperative serves to extend his experience; if he is to venture more widely, he has to be led, kicking and screaming if need be.
This is another exception to the obsession of those with autism and the obsession of the rest of us: theirs is more stubborn. Joe’s persistence is something else.
‘Noo,’ says Joe, his word for video (origin a mystery).
‘No, Joe, no noo at Daddy’s house today.’
‘Noo!’
‘No, Joe, no noo today.’
‘Noo!’ the long vowel straining plaintively in his throat.
So he drags a chair from the kitchen with the idea of clambering to the top of the bookshelves to some spot where he’d once, perhaps three years past, seen a video in hiding. He was once found swinging from the top of a kitchen cupboard door, screaming and frantic as his grip began to fail, left dangling when the chair beneath him tipped over during an illicit scout for videos.
‘Oh, but he enjoys them so much, surely he can have one now and then?’ Almost anyone who’s heard of Joe will say as much. What harm would it do? What cruelty to deny to a child who endures such frustration in life this one greatest pleasure? The unforgiving fact is that Joe is calmer, happier, when consistently told ‘no’. To offer hope that I’ll give way occasionally is to feed an insatiable agitation. There’s some sickness, surely, some monstrous sadism in life’s joke that leaves him most disturbed by what he most enjoys, then makes temptation ubiquitous.
We’ve struggled with the problem for years, trying intermittently to use videos as motivators, promised in return for some good work or behaviour (‘He loves them so. Surely we can get him to do something constructive to earn one?’). But he was motivated only to skimp the work, the more quickly to demand the reward. On other occasions we tried to ration them rigidly on the grounds that the world was full of the pernicious things and creating a video-free environment for Joe was unrealistic. Thus the attempt to create discipline, not denial.
Whatever we tried, we failed, as the hours spent watching were either steadily ratcheted up to appease his distress, or became hours of imminent torture as with tears and ferocious tantrums Joe raged against the limitations set on his viewing. The more he had, the more he wanted. Zero tolerance is not an idea I care for, but it’s all we have. During those optimistic, misguided episodes when we thought we could control his obsession, Joe would start by being allowed one video a week, or perhaps one at his mother’s house and one at mine. He adapted to this routine by clamouring for a video the second he walked through the door; as the final credits rolled, he was clamouring to go back again. To hear a child pining for his mother tugs at your heart, and some of it was genuine, but the rest was fraud: he was pining mostly for Postman Pat.
‘Mee,’ he says (from the second syllable of Mummy).
‘Mee, mee!’ over and over again.
Joe’s accidentally cruel genius was to compound my feelings of inadequacy at failing to calm his obsession by also spurning me now I’d served my purpose. In war, we applaud ruthlessness like that; perhaps that’s why caring for Joe had the ring of shellfire. I knew his incessant ‘Mee’ was partly a means to an end, just as ‘Dee’ might become his passion once his mother had exhausted her usefulness in turn, and so I had to suspend my nature, stop thinking as a father, to appreciate that this was rejection with no hurt imagined or intended; he simply had other things on his mind.
Another failure was our belief that we could limit the hypnotic effect of videos by preventing Joe from rewinding and replaying the same scene – when Postman Pat falls down the hill in the snow, when the tree blows over in Winnie the Pooh – replaying it perhaps twenty times before moving on. It made no difference, he was hooked on any terms, and in this state of relentless, nagging disquiet he’d pester and pester and pester; he’d type on his Lightwriter over and over again different formulations of the same desire and then hit the speak button repeatedly:
‘good boy joe video yes’, its mechanical staccato voice would say before I interrupted and typed once more the answer he’d already heard innumerable times that day:
‘sleep first then mummy’
That is, he must wait until the following day. He would erase it and write instead:
‘no sleep car red video pat’
Or
‘pasta first then video’
‘i want video’
‘video yes mummy soon’
You have to admire his versatility, his relentless ingenuity, his incorrigible disregard for the slow shredding of my placidity. I can’t ignore him, believe me I’ve tried. He’s liable to take silence as denial, not just for the present but for all time. His appeals become more agonised and frantic, he hits his head and face with hands and fists, shouting ‘noo’ and throwing either himself onto the chair or objects around the room, down the stairs, at me or Cait. ‘Sleep first’ was my pitiful compromise between offering consolation (‘yes, you will have another before long’) and restraining his appetite (‘but not yet’).
And on they would go, these interminable mechanical requests, until I’d take away his Lightwriter and put it out of reach, take away the machine we bought to give him a voice, a voice which that day I could no longer stand. At such moments, he cared for nothing in the world apart from videos and snarled at whatever I dared suggest by way of distraction. In this battle of wills my own was a paltry thing, hopelessly outgunned. I hung on only because the distant alternative was far, far worse.
So it was that on reflection after a day in the trenches we plucked up courage to ban videos, threw them out, and faced two or three unrelenting weeks of the drug abuser’s cold turkey with not even those hours in front of the screen to relieve Joe’s mania. When we took that nuclear option, we broke his heart, and felt his despair would break ours. But with time, most sadness mends, vicious cycles can break, and two or three weeks was about the norm (we went through it more than once) before he began slowly to calm down and become the happier, more-rounded child we knew he could be, his demonic possession never quite exorcised but at least at bay.
Were we right? I don’t know. Would it be more humane to allow Joe to have his fill, sit in front of limitless videos, let him enjoy this rare, exultant thrill – to give in? Tomorrow would be easier, that’s for sure, but would he then be lost to reality, hypnotically sealed in a flickering landscape inhabited by Disney, Postman Pat, Fireman Sam and the Teletubbies? We aspire to as much normality in Joe’s life as his disability permits, but sometimes, when I wonder whether normality provides much nourishment to Joe, the video netherworld seems not so unreasonable. I don’t know the right course even now, and simply offer this: the more he watches, the more aggressive he becomes, the less tolerant, the more obsessive about all things, the less interested in the world outside, the more remote from other people and the less civilised (or do I mean human?).
In a recent report, his schoolteacher wrote: ‘Left to his own devices his repertoire of activities will quickly become limited and predictable.’ It would, I suspect, become monotonous in the extreme. The word video is now taboo, except once a year at Christmas when Joe is permitted to watch one – a strange conception of Christmas but as good as any he’s likely to understand. If the taboo word is spoken within his hearing we all skip a beat for fear of his reaction and have acquired the habit of using words like ‘tape’ or ‘vid’ or spelling it out instead. Our perverse hope, given that we yearn for Joe to learn, is that this code will be secure from the catastrophe of him understanding. Nowadays the closest he comes to watching a video – Christmas excepted – is to stare at the thumbnail adverts for them in children’s magazines, or on
ce in a while to stand in a shop, open empty boxes and linger over pictures of Peter Pan or the Aristocats. Ah, he loves them so, I think to myself, seeing the yearning in his face. Surely just one wouldn’t hurt? We’ve all felt the pull, all been beguiled by Joe’s forlorn desperation, all betrayed our better judgement, all regretted it.
It’s not unusual for autistic children to seem possessed. I’ve read of an obsession for sugar so consuming that one boy, given the chance, would sit with a spoon and eat to the bottom of a twopound bag of Tate and Lyle; of a fascination with emptying the contents of cereal packets, or pouring liquids down the drain: shampoo, washing-up liquid, fresh milk. Washing machines are often a favourite; vacuum cleaners another. It seems likely that some of the appeal is hypnotic – a sense of poetry in sinuous, fluid movement or beauty in mechanical cause and effect, some music in the cascade of cornflakes to the floor, some dance in the coloured jumble in the washing machine – and the children do have a trance-like air about them. Sometimes they will seem to conjure physical excitement from nowhere, flapping their hands or shaking their heads. One word used to describe this is ‘stimming’ – self-stimulating behaviour – a kind of feedback, a loop between causing an action and becoming caught up within it. With his whole body, Joe will rhythmically buck himself off the bed with massive energy, like yogic flying, laughing hysterically, as each bounce propels him into the next movement, again and again, a flapping fish on the dockside. Watching a video, he surges forward and back as if urging the action on, and is further mesmerised as the scene unfolds.
I’m aware of eliding a number of characteristics here, but it strikes me that there’s continuity between routine, leading to repetition and obsession on the one hand, and the difficulty in making sense of novelty on the other, observed perhaps in the fact that some children with autism will withdraw to the inner consolation of stimming when most troubled by unfamiliar external events. They have the appearance of fending off what they don’t know by hanging on to the skirts of what they do, normal enough among all children, but here carried to an obsessive excess.
Even though life is now video-free, at least as free as it can be given high-street window displays, Joe’s obsessive nature is still not entirely contained, but seeps into every occasion. Once in a while we zip along the A41 to my parents’ house in Hertfordshire, nestling half an hour away in the Chiltern Hills. Over time, Joe has learnt the refrain he now performs from the moment the car is parked there to the moment we leave.
The car door opens, he canters up the drive, rings the doorbell, steps back three paces. The front door swings wide, he hurtles inside, dashes into the living room and stands a few feet short of the television to pick out any videos he recognises. They’ve all been removed. He comes out of the living room, goes into the kitchen, opens the fridge, asks for microwave chips – no pasta here, he knows – sits under the stairs to eat them, asks for another packet, settles for a sandwich, eats it, jumps up, asks for juice, drinks half, pours the rest down the sink. Back into the living room he pulls at the sliding patio door until we open it, goes outside and asks me to throw a large sponge ball high into the air which he fetches a dozen times and lobs back to me before finally flinging it into the vegetable patch. Then I throw it onto the roof and we watch it tumble down. He gets bored and runs round the outside of the house to the front door, rings the bell again, laughs when someone opens the door, comes in, charges through the hall, into the living room and leaves again by the patio door, five times, or thereabouts. Then he opens the back door to the annex, plays at slamming it until I fear for the glass and throw a towel over the top to soften the impact. He goes upstairs to sit in Grandma’s bed, sings to himself, comes down, asks me to join him. We play in the bed, he sits in the other beds, he asks to go home, asks many times, and eventually we do. The order might vary slightly. I do mean slightly. Lately, the whole performance has tended to accelerate. As if on speed, he now blasts along on a breathless charge from one scene to the next. Move over the Reduced Shakespeare Company. Joe knows the plot backwards but usually plays it only one way.
This is the child we took from a life defined intensely by sameness and put in a place where all was strange, a sheep at sea, a chimp in the Arctic, little that was recognisable. To Joe too, in my thoughts, I whispered ‘good luck’.
So worried was I about his proclivity for adopting stock behaviours, like the lazy owner of a thin phrase book, that I also thought there was potential for any trouble in his first days at school to be quickly cemented into habit. Instead of growing accustomed to his new surroundings and new routines, instead of settling in, I asked, would he settle into a pattern of riot? If so, time, the healer, would not help but rather consolidate all that was going wrong as, through repetition, new tools of rebellion found permanence in his arsenal.
In short, the school’s intimidating initial task was to try to restrain Joe’s high-pressure tendency to become a runaway train. We thought he had been well behaved immediately before he started, but we had the advantage of knowing his idiosyncrasies, knowing which techniques worked to apply the brakes, and we had only one strange child to worry about. There’s no disguising the brutality of his removal, not far short of kidnap I should think, and all concerned were steeled for the weeks ahead as we found out whether he would adapt. There’s uncertainty about the prospects of all children, though perhaps a little more about Joe’s than most. He was on probation, no certainty he could stay if he proved unmanageable to his young carers. By Christmas, he might be out, leaving lurking in the background the familiar, almighty, stupefying question: ‘Then what?’ And so we began.
4
Language
For days at his new school, Joe ate little. This was unnerving in a boy whose table manners were capable of striking fear into the food on his plate, but who now survived on toast at breakfast, a piece of fruit during the day and a snack in the evening, when this necessary but stringent regime relented for survival’s sake. Otherwise he sat at table shoving away his plate with more or less disgust, or fled the dining room to trash his bedroom. The school’s efforts were not hopeless: one day he licked a rice crispy, then thought better of it.
By the fourth week, Joe was probably beginning to realise that this was no temporary exile. One weekend Mummy would come, the next weekend Daddy. They’d see him for two days, then go again. He would stay, and the bad new ways, the unfamiliar leading edge of change, would continue to tear at the roots of everything he knew. Whatever hopes he had of being restored to comfortable old surroundings must have been steadily, pitilessly extinguished.
He was perfectly able to count the number of sleeps between one visit and the next and clung to a piece of paper on which they were ticked off. Since this became a refuge from acceptance, it was decided that the school needed a better chance to catch his attention, to stop him treating each minute of the day as time in the waiting room. We kicked away that harmful crutch and the next weekend no one came to see him – all in the cause of kindness, so we said. The following Friday he began coming home for alternate weekends.
A few weeks into this new routine Joe began banging his head on the wall at school. The first time he arrived home with a large, colourful lump above his eye, the explanations were vague and the more disconcerting for that. There was no suggestion – and no probability – that anyone did it but Joe himself, minor self-harm having been part of his volcanic repertoire for years. Taking a walk at home on one occasion soon afterwards he resisted by clouting his head several times on a brick wall, an adult hand softening the worst of the impact. What happened at school was plausibly a refinement of his technique, perhaps following the example of other children, but there was uncertainty about exactly when and why Joe did it.
Strange to think that he could plunge in an instant from apparent quietude to a shrill, despairing hell without anyone noticing why. Though sometimes unpredictable, he’s not entirely irrational. The simple explanation is that there’s often no way of knowing what moti
vates him, especially if you’re not used to reading the signs, a task made harder by his steady undercurrent of emotional convulsion. His expectations and intentions can be mysterious at the best of times and the staff were quite likely unaware that Joe had been on a collision course for several minutes. For how would he tell them? Joe’s language is limited and unconventional. It’s easy to imagine the confusion of strangers, accustomed though they were to the weird ways of autism, trying to engage with Joe but being easily misled.
‘Mee!’ says Joe.
‘Yes, that’s right, Joe,’ says his carer, thinking not unreasonably that ‘Mee’ means ‘me’. ‘You’re coming too.’
Reasonable, but unhappily wrong, for Joe’s ‘Mee’ is Mummy. It might have been a request, a yearning, and now he’s been given unwitting encouragement to think his yearning might be soon satisfied.
‘Mee,’ says Joe again, as he hears and understands only the confirmatory ‘yes’ and nothing else. He’s euphoric now.
‘Yes, Joe, you,’ says the carer, encouraged by Joe’s excitement. ‘We’re going in the play room. And you’re coming in too.’ How close farce is to agony: ‘Mee!’ He shouts, convinced she’s waiting for him behind that door, opening it, charging through in pure joy and finding, from blameless motives, an empty room. The quickest way to appease Joe is to say ‘yes’, but it helps to be sure what one is saying ‘yes’ to. And yet certainty is deceptive: there’ve been moments when we all thought we knew.
Joe Page 5
