All of which is some disadvantage given that there can be few more necessary cultural lessons than survival. Most of us attend to them carefully enough, even if to forget or briefly ignore what we’ve learnt once teenaged immortality kicks in and risk begins to feel life-affirming. Joe doesn’t care for my opinion about danger even now, having no faculty for judging the magnitude of a risk (for which ‘Will it kill me?’ would be a start) and not even understanding the notion that there can be degrees of probability of harm. That is, he doesn’t know how serious it could be, nor how likely. He’s unaware of many of these ordinary practicalities of negotiating life’s hazards quite simply because he’s cut off from the lessons of other people’s experience. It’s often said of children, and in Joe’s case it’s often literally true: he can’t be told.
The writer Francis Spufford finds children in that condition unbearable: ‘locked in their innocence, tottering through a world they don’t understand in the misplaced confidence that it’s safe’.
Simple enough to put them right, surely? As I watch Joe tottering through the world, I think how short, how vivid, how pregnant a word is ‘danger’, and for all those reasons how bloody insufferably impossible to convey its meaning to him. So it is that our differences from Joe lurk among the obvious – obvious to us, that is – everyday things we take for granted, suggesting perhaps that those simple things are not so trivial, that sophisticated existence turns on small cogs, making me think how complacent I am about how remarkable people are, how it is that extraordinary things tend to happen when you can’t do the ordinary, and how we should look with less complacency on our simple selves.
After nearly ten years of looking after Joe, we were running out of steam, at the point of accepting that we could no longer customise his future. Our problem was not controlling him – we managed that passably well – it was controlling the world. His mother in particular had devoted herself to creating a unique environment for Joe that required the help of a small legion of remarkable carers with an extravagant degree of commitment. They were hard to find and hard to keep, the whole operation like running a small business.
One after another, Josie, Joanna and the others would arrive for a morning or afternoon shift, weathering his tantrums, coaxing Joe to the table time after time, offering small rewards, working patiently through the words and locations of various body parts, the numbers and names of household objects, day after day until he got them; through prepositions, jigsaws, the names of animals and colours, encouraging him to copy letters and identify shapes, guiding his pen through miles of meandering drunken ink. Each had her style: Josie quiet and encouraging, Joanna taking no nonsense. Each, I think, grew fond of him, but everyone felt the stresses pulling at their mental seams.
The local authority finally offered adequate financial help, but little else, and securing even that had been a protracted saga of delay and denial in which all other options had to be seen to fail before Joe’s home-therapy regime was approved. Yet we knew we’d been relatively lucky not to find ourselves bankrupt in the cause of Joe’s education. Social services offered three hours of respite each week with a couple who seemed to be their foster-care SAS, saying they had no one else capable of meeting Joe’s needs, for which read no one able to cope with him. It wasn’t for want of trying. We watched a succession of confident, optimistic people sent by social services beat a swift retreat. Joe was growing bigger, stronger, more resourceful. It was increasingly unreasonable to ask others to come to the house to care for him, often on their own in a place ill-suited to the task. Meanwhile, his isolation fed a steadily more eccentric existence. The only child of comparable age with whom he had any sort of relationship was his sister and there was a crying need to try to broaden his social experience. Reason, exhaustion and the loneliness of the task were conspiring against the determination to keep him at home.
So much of what he had experienced was plain odd, between his looking-glass moment and arriving in the late-summer sunshine at Bristol. In those nine years of difference his experience, informed only by his own unique existence, was of no use outside its own narrow bounds and prepared him for nothing else.
As his mother talks to some of the senior staff, I take him round the grounds and buildings for an hour or more, introducing him to teachers and carers, showing them what he can read, some of the hundreds of words he can type on his voice-synthesising Lightwriter, how he knows colours and shapes, how he reacts to being taught, to other children and much else besides, all to see if we’ve found a humane place for him where a different path to experience is acceptable and not potentially fatal.
By the end of the visit his anxiety is getting the better of us, he’s asking for the car and wants his Mummy to come out of that meeting room. It’s a good place, though, with good people, and we agree for the first time as we leave that this is a school we could imagine him attending, if they’ll have him. Climbing back into the car, Joe is happy again to be back among his family with the strange place left behind and the cosier kind of familiarity restored. Safe and sound, his mood somersaults into glee, the fear dissolves and he laughs and rocks in the seat. Within a month, he’s gone.
3
Obsession
Good idea, I thought, on seeing a sample school menu: wholesome, varied, organic, fresh meat and fish, steamed vegetables, brown rice; and good luck.
Plenty of children arriving here eat only one thing, they said, but all submit to sumptuous, nutritious variety, eventually. Admirable, I thought, heroic even. Yes, good luck.
Joe had been accepted by the school in Bristol. I roused myself from a slump at my desk to take the call, then sank my head in my hands and thanked God. We’d worried that it wouldn’t accord with the local authority’s idea of a suitable placement– too normal for him, they might say – which is why the alternatives so sacred me. As it was, the transition would be interesting enough, not least at mealtimes. Joe prefers pasta. More precisely, he prefers Sainsbury’s spinach and ricotta tortellini. In fact, he’s altogether rather particular about it: no other brand, no other variety, no sauce, no accompaniment and, in an ideal world, no other food. I’ve woken at six in the morning to feel its slithery plastic packaging pressed to my nose. He’d live on it, if allowed.
How what looks to me like green papier mâché wrapped in yellow putty first crept into a gap in the armour-plated fastidiousness with which Joe was born, I haven’t a clue; nor can I fathom how one mouthful became a compulsion. Suffice to say, he was soon hooked. In food, as in many habits of life, Joe tends towards a point of singularity, some powerful gravity bringing all purpose, all desire down to one irreducible, obdurate core. In all other respects this core is videos, in food it is Sainsbury’s spinach and ricotta tortellini.
We invited him to broaden his experience; he disrespectfully declined. We fought to widen his vision; he rebelled with the squint-eyed focus of an infant Clint Eastwood. We steered him towards other foods he tolerated such as peanut butter sandwiches, baked beans, chips or yoghurts. He veered like a somnolent driver, always back to pasta. A packet serving two adults wasn’t enough, at neither the first serving nor sometimes the second. His appetite was wolfish and as so often when resisting his monomania, I felt like the lamb who might also be devoured.
One day at Sainsbury’s we turned into a parking space and before I’d pulled the keys from the ignition he’d unclipped his belt and wellied open the door. It swung wide with a pop art ‘clunk’ – right into the navy-blue estate next to us. His timing was impeccable. The woman pushing her shopping trolley to a stop on the path by the parking bays was the driver. Through the windscreen, I watched her gasp.
The metallic thump on her bodywork hit her like concussion, but Joe, oblivious, shameless, just hurtled past. He didn’t worry, didn’t know. She couldn’t believe that, caught in the act, he didn’t care, and wouldn’t have thought much of his sense of priorities. Little did she know there was pasta at stake. I could sense her simmering temptation to clip hi
m round the ear. I sympathised, but wearily. One learns to shrug at Joe, each time he despatches some valued item into the void, but shrugging takes practice and the poor lady hadn’t previously experienced the collateral damage of Joe’s single-mindedness, wasn’t yet inured to the material loss.
‘Joe!’ I thundered, to impress her rather than chastise him, since he barely registered the tone of voice and stopped only to wait for me. Down the side of the door of the blue car was a long, hazy red stripe. A couple of minutes with a wipe steadily erased the mark and she was generous enough to leave with only an apology. Joe had just one thing on his mind and we were off at a canter as soon as I joined him.
On occasion, after I’d summoned courage to bully him into eating something new, he’d be sick. Whether the antipathy was physical or psychological, I couldn’t tell; the vomit was authentic.
‘Ick,’ says Joe, with comic matter-of-factness.
‘Ick,’ he says, as if noting a curious change in the weather, until I say it too.
‘Yes, Joe. Sick. The wind shifting northerly, I see.’ And I fetch a cloth.
His Lightwriter is a device like a lap-top incorporating a voice-synthesiser which supplements Joe’s limited spoken vocabulary. He types the word and the machine speaks it. One day when the cupboard was bare, the spelling he was working towards turned out to be ‘Sainsbury’. Any carrier bag with that name began to be ransacked, contents spread across the table, onto the floor, yoghurts splatting open while I tried to restrain him. Finding a packet, he’d cling to it from his mother’s house to mine or back again; he’d take it to bed at night; he’d emerge from the kitchen waving a carving knife to have it opened and press a saucepan, colander and plate on me in rapid succession. His spoken word for pasta is ‘pak’; three letters in which he somehow finds room for three syllables and a three-tone melody, rising then falling. Even obsession can sound lyrical. We heard the song of ‘pak’ frequently; and ‘mo [more] pak’ nearly as often.
Joe, like many children with autism – like many children – aches for familiarity. Endless repetition is a hallmark of his everyday life: the same songs, same games, same food, same routines. When we sing ‘Old Macdonald’ I supplement it with Makaton, a much-simplified version of British Sign Language, where pigs are a circling fist in front of the nose and horses clip-clop with two fingers of one hand astride the sideways palm of the other. In our version, each animal has a unique way of tickling Joe, and through the grunts and neighs and moos I think to myself, How many times is that? When we finish, Joe shouts: ‘Genn!’
‘Genn!’
And we sing it again.
‘Genn!’
And again. As the herds of pigs and horses and cows multiplied over the years and Old Macdonald no doubt survived on the subsidies and fretted over the paperwork, I used to wonder how many hundreds there’d been. Now I wonder if I should wonder in thousands.
Pasta and videos, though, form the steady pulse of his obsession. The videos had to be known videos, the same few played eternally. New ones didn’t much register unless they included familiar characters, in which case they’d be tolerated until recognised frame by frame and then also admitted to the canon of fixation. Other obsessions I could imagine fading one day, these never would. The school didn’t ban them so much as ignore their existence; children of Joe’s age not normally being allowed techno-toys of any kind, videos, computers, CD players and the like. No doubt about it, I thought: good luck.
He spent the first few days at school with one of us at his side until bedtime and he was reassured we’d be there in the morning, but he wasn’t happy. He needed constant comforting, his face clouded with terror whenever I moved away, he resisted the involvement of others, he wanted to go home. Unsurprisingly so, since all was new: the people, the place, the food and many everyday events, as custom and habit were all but wiped clean. Of course, there were tight new routines at all points of the day, but it’s hard to imagine how alien they must have first appeared, how terrible the initial shock of dislocation. One evening at about eight o’clock I looked at my watch and became aware of a sense of relief – knowing Joe was at last asleep and the day’s unhappiness over. That I was more comfortable thinking him unconscious speaks as much to my guilt as to his misfortune, for there was a nagging archetype of fatherly provider in the back of my mind, insisting that I ought to make things better for him, lift his misery, and yet, though I could think of many ways in which his new life was imperfect, my ability to improve it was exhausted. The school life was the best on offer, not least because the surer route to deeper unhappiness for Joe was to give in to his limpet-like obsessions.
I found myself clinging to a paradoxical hope: that Joe’s fondness for routine, if at first making the novelty of his surroundings more upsetting, would in time loosen and displace the hold of routines past. For the novel would soon become the new routine, loved as much as the old had been, and the old, once so captivating, would become merely memory. I found that I was depending for the sake of Joe’s happiness on being supplanted in his life by a keener attachment to whatever was now happening every day. There’s a difference, of course, between fondness for routine and love of individuals, but I think less so in Joe’s case, since other people are most dear to him in great part to the extent to which they are predictable and dependable. There is a sense for Joe in which quantity will often be quality, and he will love more that which he experiences most often. At least, I half hoped so.
One of the reasons we chose the school was because it didn’t show videos. We’d counted our bruises and concluded he was better behaved when denied. Most schools capitulate to the craving, which is common among autistic children, the staff finding the respite doubly irresistible: it stops the whining and the child is occupied. We knew from experience that this was a delusive peace, that it would be a short-term respite and a self-defeating one, for videos are Joe’s lotus fruit: exquisitely delicious to him but poison to his wider attention. They sap every desire for any kind of existence away from the screen, and so the more he watches, the more he craves. Unchecked, he would descend into a world of videos everlasting.
‘He’d climb,’ says his mother, ‘over my dead body for a video.’ No one, I should say, loves him more, but you can pour love and energy into Joe and feel snubbed for a glimpse of Postman Pat. It’s best not to take it personally.
‘Bless him!’ say those who’ve mostly not experienced his stamina. ‘Children. They do pester, don’t they?’ Friends remark that all children like routine, all children like what they know, all are obsessive at times. Such commonplaces offer reassurance: ‘Don’t panic, mine do it too. Joe isn’t unusual, and anyway, how bad can it be? One shouldn’t fret about a little repetitive behaviour in one’s children.’
I’m grateful for the intended consolation but, truly, they have no idea. For there’s the obsession of normal children and there’s Joe. Let me try to put it into perspective. If Joe found on escaping to various neighbours’ houses that he was in a nirvana of endless videos, he might have popped home briefly to refuel with pasta, but never again to stay. Never. He knows his priorities. Think drug-crazed, fanatical, murderous desperation; think lawless smack habit; think this without exaggeration; think it seriously. There’s a phrase used of Olympic champions and artists devoted to their craft: single-minded. Imagine this with absurd literality: a mind with one objective only, a single thought driving out all others, the thought of an obsessive lover, a glutton on a fast, a drowning man.
Picture him smashing his head on a lamppost when an expected glimpse of a video box, never mind the film itself, failed to materialise because the library was unexpectedly closed. Think of the time Joe and I called on a friend in St Albans. We allowed him a bare minute to explore as she and I chatted in the hall on the way out, only to hear within moments the sound of a wild thrashing of the upright piano in the next room. Was he playing it, or demolishing it? I dropped my coat and followed the noise to find him staging an assault on the piano l
ike a cliff face, after establishing base camp on the keyboard he now searched, scrambled, stomped up and down looking for a foothold to take him higher, having already discovered by practical trial that the music stand was too fragile to take his weight, and left it dangling from a hinge.
At the summit – of both the piano and Joe’s ambition – was a shelf stacked with video tapes, supposedly far enough out of reach to deter any sane child’s attempt, but not out of sight and therefore not high enough to deter Joe. I reached out to lift him – higher, he assumed; lower, I intended – and barely held his weight as he leant precariously out of my arms reaching, complaining longingly to the last.
Think of him ripping through any shop, sprinting (in his fashion) to the rows of tapes, and then from shop to shop and back again, cracking open empty box after empty box. Imagine him trashing any home, turning out cupboards faster than I can stuff the contents back, scouring under tables, standing in the centre of a room and scrutinising every surface, every nook, every plausible hiding place, gauging its potential.
Joe Page 3