There is an African saying that goes: ‘It takes a whole village to raise a child.’ And so it should. Being ‘human’ is as collective a label as ever there was.
Postscript
As I write, Joe is sitting on the carpet, playing The Cat in The Hat on his computer, cackling wickedly as the cat and the cake and the rake and the ball come tumbling down. He’s just had breakfast of beans on toast and is pestering for Jacob’s cream crackers:
‘Bik-kit.’
Biscuit.
‘Bik-kit.’
It’s his latest dietary fad, but a latest fad is progress: it means he’s added to the old ones. He eats like a food processor, as before, from hand through churning jaws to boundless gullet at a rate of knots, but get this: he also eats – with gusto – salmon, sausage rolls, brown rice, curry, salads … just about everything on the menu. ‘Good luck,’ I’d said, but they’d sidestepped chance and ganged up on him with iron perseverance instead.
When he comes home he’d still rather exist on Sainsbury’s spinach and ricotta tortellini, he is still obsessive and we have to stand our ground. His life’s repertoire has expanded but we know it’s on a vicious piece of elastic, liable to contract without warning. Still, the sense I had of Joe disappearing into a singularity, an ever-diminishing core of endlessly repeated behaviour, a black hole, is eased thanks to the school’s continual efforts to widen his horizons. When he’s dropped off there after a weekend or holiday at home, he’s calm and I suspect not too far from content.
In other ways, he’s the same as ever. He can still, frankly, be an almighty pain in the arse, at school no less than at home. He goes on, and on, as he always did. He’s obstinate, unpredictable and occasionally violent. Mind you, it’s a good while since I saw him hit anyone else, alert though we remain around crying babies. At times, I continue to feel like a loosely woven cloth out of which Joe strips, strand by strand, most of the fabric until the warp and weft disintegrate and all that’s left is a couple of dribbling threads. His carers tell us from time to time, with a smile, how he’s been ‘a bit difficult’ this week, or ‘brilliant’ the next. Odd new idiosyncrasies sprout from nowhere, he has his ups and downs.
He makes slow but steady developmental progress. He’s been picking up a few more words here and there. He seems a little more patient, or maybe it’s because he’s with me less often that I’ve gained some patience myself. The occasional change of staff at school rattles him and he does his best to test incomers to destruction. In these periods, at times when I catch Joe staring into space, I can’t help wondering if he’s plotting their downfall. It still seems possible the whole project could unwind.
So there is no ending, happy or otherwise, but certain fears have receded and new ones emerged. He seems to be moving prematurely into adolescence with excellent potential for disaster as he expresses his maturing self with such a thin sense of social convention. On the whole society tends to crack down on acts like the indecent exposure he’s sometimes inclined to. In a toddler we think it cute, in a young adult, arrestable. He has yet to discover girls but, if he does, God knows what will follow – anything, I imagine, from comedy and heartache to real alarm. Still, if all goes well, Joe will be at the school until he’s eighteen.
And then what? Frankly, no idea, but just at the moment eight years in which he’s at home little more than a quarter of the time feels like an eternity of respite, sometimes too much of an eternity. I tend not to see Joe’s future as a steady march to the sunlit uplands, his life doesn’t await maturity, change being so slow that I’ve thought of him for a long time now as of no age in particular. The future is here, it will be as it already is.
I do, though, have a dream, one day in the blue, when Joe sits proudly on my shoulders. A great crowd, as if acclaiming the FA Cup raised in the giant-killing hands of part-time butchers and bakers, cheers euphorically at the perfect realisation of unreasonable hope. It’s a dream of a dream fulfilled.
I gesture for calm, the adoring masses settle. I tell them: ‘Here he is: Joe. Look upon him, and learn,’ and the roar of triumphant acclaim overwhelms us. Hail the glory of Joe! As the reverential hush returns, they strain to gather the words of their philosopher king. And he says:
‘Pat!’
‘Noo!’
‘Pak!’
And I interpret: ‘People, Joe says unto you, “A video of Postman Pat and then Sainsbury’s spinach and ricotta tortellini!”’ And the cheers echo to the heavens.
It’s good comedy, parental vanity, or deserves to be. In defence, no Hollywood starlet falls into my arms in the last scene, but Joe and I bask in teen-fantasy righteousness while before us doubters wither.
Interpretation of this dream is easy: it’s a thirst for redemption, for us both. Perhaps that’s what this book has been about: I feel Joe has been shut away and that I played a part in shutting him there, so I want to take him out, show him off, claim for him all the interest and importance that his miserly condition would deny, and to do so partly by saying that we can understand ourselves better if only we understand him. So I pull on your sleeve for attention. All books have a bit of the brat about them – look at me, look at me! – this one perhaps more than most.
Although to say that he is shut away is a slander. Joe’s carers strive to give him a social life and to some extent succeed. He is, as he should be, part of a wider community now and I feel his own identity grows with his circle of acquaintance. He is not shut away from care and compassion or contact with his neighbourhood where the school is cheerfully accepted, or his family. It’s not a bin, unlike some other institutions that once loomed Joe’s way, where mere containment is a notable achievement.
Joe was lucky. Rejection by his school wasn’t far away, and the other side of that line can be a frightening place where children’s behaviour is judged so disturbed that I’ve not much doubt Joe would have spiralled into hell. Instead he is accepted by staff whose generosity of spirit is overwhelming, their reserves of patience and compassion heroic. To anyone who has ever contemplated voluntary work or work with the disabled but feels it doesn’t quite earn the acclaim of the world, doesn’t quite measure up against their cutting and thrusting contemporaries, think of the immensity of the weight it lifts from those of us well on the way to delirium at the loneliness of care, and the richness it brings to the lives of those as dependent as Joe. The prospects for many autistic children are ghastly; Joe’s now far better.
The medical prospects, though, haven’t budged, and we are still very far from understanding autism. Some progress has come as a result of brain imaging in identifying areas that light up differently, some from identifying implicated genes, but at the moment this is of academic curiosity, the kind of science that will be bountiful one day, a day that comes closer, but yields modest practical benefit for the time being.
The latest theory to cause a stir – again from the agile mind of Simon Baron-Cohen and his team at Cambridge – is that autism is an extreme version of the male brain. My own view is that it’s just possible there’s something in this. Males are far more likely to be autistic. Of course, haemophilia is also a male problem and we don’t say those who have haemophilia are extreme versions of the male. Statistical incidence is no proof of such a hypothesis. Furthermore, the theory would suggest that we should see a lower ratio of male to female cases of Asperger’s, typically characterised as mild autism, and more males to females at the severe end of the spectrum. In fact, the male–female ratio is even higher in ‘mild’ Asperger’s than it is in ‘severe’ autism. If the theory is correct, it might be necessary to re-characterise Asperger’s as pure autism rather than mild autism and the shape of the spectrum will have to be redrawn.
Baron-Cohen’s ideas hinge more critically on a typology of male and female brains as systemisers and empathisers. Empathising is ‘the drive to identify another person’s emotions and thoughts, and to respond to them with an appropriate emotion’. Not just the low-grade mind-reading we’ve talk
ed about earlier, in other words, but caring too. Systemising is ‘the drive to analyse, explore and construct a system’. The systemiser, he says, ‘intuitively figures out how things work, or extracts the underlying rules that govern the behaviour of the system.’ According to this theory, people with autism are strong on systemising and weak on empathising.
A fascinating current in these ideas is the tendency to talk about difference rather than deficit (‘deficit is neurology’s favourite word’ – Oliver Sacks). This is a great leap in attitude that builds on Uta Frith’s idea that some aspects of autism are a matter of cognitive style and is as big an innovation as there’s been in sixty years of autism study; long overdue, in the view of some campaigners who resist talk of a cure for autism.
Yet Simon Baron-Cohen’s systemising and empathising definitions are, in my view, extremely tricky to uphold with the neatness he claims, even if, as he emphasises, he’s talking about men and women on average not about every single man or woman. Let’s be clear, this is an order of magnitude more intelligent than any ‘Mars/Venus whimsy’, as one reviewer put it, but it still depends on a bipolar classification of all thought and behaviour. I’m not convinced by his bold assertion that ‘systemizing and empathizing are wholly different kinds of process’ with one applying uniquely to the way we understand people and the other to everything else. Take just the question of rule-building which is supposed to typify systemisers. It seems to me that our experience of life leads to a kind of rule building which applies in spades to human interaction. We learn, for example, that when Great Aunt Doris goes silent at mealtimes, you’re for it, and we know this not from instinct but the clip round the ear we got last time. We apply this rule to her but not to others, though we may also use it to enrich our sense of what human silence might imply. Thus we use systemising skills to become more empathetic. Maybe thinking so proves I’m a bit autistic, but I think Baron-Cohen has more work to do on the theory yet. However, problems defining the difference between brain types don’t mean there isn’t one, and I suspect he will make progress.
But who am I to say? Uta Frith has written: ‘The riddle of the beautiful child with autism locked in his or her own world is an irresistible challenge to amateur psychologists. They are tempted to base their answers on a few facts and observations.’ Weird and wonderful speculation will flourish, she says. In the six months I’ve been writing this book, indulging my own weird and wonderful speculation, I’ve doubted my every word about Joe’s disability. The enigma, as Frith calls autism, seems to float a clear deficit into view inviting a straightforward theory, and then just when you think you have one brings to your attention an endless stream of confounding irregularities. To say Joe’s disability lacks neatness would be a gross understatement. Even as I describe his lack of awareness of the minds of others, I recall the way he has of holding my head and looking deep into my eyes that seems to mock my understanding and hint that this is a game of deception he knows he’s winning, a game he plays with infinitely more sophistication. Though he is plainly sometimes vulnerable to sensory overload, he will now and then turn on all the lights in daytime, the TV, and play on top of it all at full volume a cassette tape of Winnie the Pooh favourite songs, to which he sings along and throws himself about. Where’s the sensitivity in that?
That uncertainty is a virtue in this respect was brought home to me when I came across WrongPlanet.net, a website run from the US by a group of Aspies, as they refer to themselves. It features a satirical discussion of the problems of what they call NTs, or the neurologically typical; that’s you and me, by the way.
Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.
Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others.
When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity.
NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.
NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behavior.
Touché. It’s not at all obvious that all characteristics of autism are for the bad. I would still insist that there are aspects of Joe I’d happily be rid of, and could imagine stripping them out without harming the essential Joe left behind. Charlotte Moore, who has written about her two autistic sons, says you can’t separate the child from the autism. I disagree. I find it easy to picture a Joe who didn’t hit himself, who wondered what roasted vegetable pasta parcels tasted like, instead of spinach, just for a change. I don’t think I’d feel we’d lost his essence – far from it, I think we’d see him more clearly.
But I also readily accept that not everything strange is regrettable. My argument that Joe shows us by the skills he lacks what it is to be a full human being has to be tempered with the knowledge that fullness would have to include everyone, embracing all our contradictory extremes. I believe that we do not even know what we are unless we have others, different others and similar others, with whom we can compare ourselves. We are all partial, and autism, even if a little more partial than most, also adds something precious.
On holiday with Joe, his sister Cait and her best friend Ria, we arranged a game of badminton. At first Cait and Ria played while Joe and I sat and watched, but soon Joe wanted to join in. So Cait and Ria lined up on one side and Joe and I stepped onto the other. I stood behind him and helped him swing his racket in a more hopeful direction with at least some proximity to the shuttlecock.
We were soon losing badly, with less mobility around the court than a pantomime horse. And then, as a shot fell our way, we connected with it beautifully and its flight was a graceful, timeless arc of triumph beyond the reach of them both.
‘Yes!’ I shouted. ‘Joe, we did it!’
Joe dropped his racket, dim to the rules but sensing the glory, spread his arms like wings and raced off, looping round and round our side of the court in exultant, swerving celebration, uncannily like a footballer after striking the winner in the last minute of play. Where did he learn that?
‘We did it, Joe, we did it!’
I chased him round, caught him up and threw him into the air. He laughed. The girls were in hysterics. Half the sports hall was watching.
And he shouted:
‘Genn!’
‘Genn!’
Epilogue: Autumn 2006
Of late we’ve started to notice little hints that perhaps Joe is sprouting social antennae. For instance, in the playground near Joe’s school a child had a tumble and cried. Joe saw her and cried too. On another occasion some of the more sociable children and a carer were throwing a ball to each other in the school garden: Joe watched them then moved into their circle and joined in. When I hear of these new interactions my heart beats a little faster. What can it mean? Is this the beginning of a radical breakthrough to awareness sometimes found in people with Aspergers, or is that just wishful thinking?
A few months after this book was first published, I was driving in the outside lane of the M25, Joe in the back, cars in their usual tired procession at about sixty-five miles an hour. Ahead, roughly two cars distant, I saw a dash of colour and movement break abruptly from the line: a car lurched, first one way then the other then smashed head-first into the central barrier.
Suddenly we were braking and veering hard, managing to pull up on the hard shoulder behind another car that had been ahead of us and closer to disaster. The physical scene was appalling: the smell of burning rubber, the driver at the wheel sitting paralysed, door open, head bowe
d, sobbing, the whole motorway now at a stop.
At the same moment I shifted round to Joe, to reassure him, but he was perfectly calm. More than calm, he was sublimely content, untroubled, and began to sing, to sing in that odd, rising, light and tuneful melody of his, four notes as always: ‘Di di di diii!’ over and over, ‘di di di diii!’ signifying nothing so much as complete and carefree absent-mindedness. He’d noticed the crash. He looked, briefly, casually, in the ordinary way of surveying dull scenery. He didn’t think it even interesting. He waited to drive on.
In trying to make sense of Joe’s reaction later, it struck me more forcefully than ever before that, in experiencing the violence and distress of that crash I had briefly entered the absurd, breathtaking world he inhabits all the time. It savagely smashed through my bored-driver expectations, broke predictability; it was simply shocking for me to witness, yet for Joe it was – how to put it – normal.
If ever I thought that by writing about Joe I would solve his enigma, I was hopelessly wrong. In fact, having written a book that tried to pin him down I have become hawk-eyed for change. I wonder if this is what the next years will be like: on the one hand, my hopeful twitch that he is tuning into human habits and human ways; on the other, contradictory evidence of Joe’s unchanging resignation to a life that must seem like a daily anarchy to which he can never give human meaning, an anarchy we glimpse in a motorway smash, but which he experiences all the time, as life crashes his attention and he tunes out of the chaos.
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