What makes me shrink from any conclusion is a suggestion by the philosopher Galen Strawson:
Maybe we are in some deep and inalterable way incapable of really being able to believe that someone whose external behaviour is like Joe’s has an emotional life that is in at least some fundamental respects like our own (simply because we don’t get the signals we are innately tuned to expect). Maybe we are as incapable of truly believing this about a severely autistic person as a severely autistic person is of grasping that other people have emotional lives (or at least inner lives) that are in fundamental respects like his or her own. This may seem implausible at first, but on reflection I don’t see why we should be more surprised one way than the other.
I’m moved by this, the possibility that the failure is ours. In the end, we cannot know how deep is Joe’s self-consciousness, though that doubt offers both hope and disquiet. It means we might already have the faculties to enable us one day to connect, Joe and I, but it might also deepen the pity of our current disconnection; for if we do have a similar self-consciousness, we have so far been unable to prove it or share it. How sad that we communicate so badly that we cannot establish even this about one another, cannot hear any echo of ourselves in each other, and so presume, perhaps wrongly, that there is none.
Partly because of this ambiguity, I’m not sure where I would rather the answer lay for Joe: self-conscious, or not? My doubt is compounded by what sometimes happens to some people with Asperger’s: their intense self-awareness informs them that there’s something about life that they just don’t get, and they can experience an agonising, knowing desire for normality without ever quite grasping what normality is. Not all suffer thus, it is true; some remain content, even militantly content with their detachment. Some come to terms with it, develop strategies to cope, yearn to overcome it, but remain puzzled. Magic tells me it caused him deep depression for two years and it’s unquestionably true that to be aware of the difference can exact a price. Perhaps in some cases it is better to remain unaware. That’s a conclusion I resist, however, being generally of the view that knowledge is better than ignorance, but I shudder at what Joe would make of it, the extent to which he is different, were he capable of making anything of it at all. As I have watched Joe and pitched between various unsatisfactory answers to the question of his self-consciousness, it became the one problem more than any other over which I used to hang my head in perplexed defeat, though not now in despair.
The reason is that not so very long ago Joe started to do something he’d never done before but has since done often. Sitting in the red armchair with the sprung back, which he so loves to fling himself against and come recoiling upright, over and over again, he stopped and cackled wickedly, then boomed:
‘Go!’
‘Go’ is his word for Joe, since he is unable to pronounce the J.
‘Go! Pee!’
‘Peeeee!’
And he stretched his lips and pointed to his teeth to show a smile, lingering over the long vowel as if posing for a photograph. He knew, and he wanted to tell me, and though I could dismiss this self-knowledge as primitive in scope, even find a reductive explanation for it, I have no desire to. ‘Pee’ from Joe means happy.
7
Storytelling
There are no pirates in Joe’s school, no cops and robbers, cowboys and Indians. Mostly boys, aged in his house between about nine and thirteen, they are in this way singularly unlike boys. Strange to see, these healthy and in Joe’s case robust little imps forgoing the rough-and-tumble role play of their normal ways of association, the slings and arrows typical of boys being boys.
Oh, they play, all right. They bounce about, love being caught, thrown around or tickled, have their toys, their favourite things, swim, slide, swing, sing and shout, have more of that youthful quality of boiling, lidless exuberance than most, and the greatest effort goes into calming them. It’s simply an eerie absence of one type of play in particular: imaginative or fantasy play. They do not pretend, Joe’s crew, neither by creating their own worlds in which to act, nor by miniaturising scenes from life in toy people or animals. What’s missing, what makes this admirable place slightly surreal, is lack of the unreal.
The unreal is a place to which many children with autism seemingly can’t go, apparently held back by an odd literalness of imagination. How peculiar that in forsaking fantasy for reality, they become strange. And that is not the only paradox: this inability to explore life through fantasy seems to be associated in them with confusion about how to behave in reality.
One spring morning a few years back I took Joe to our local Do It All DIY store. Joe is … let’s say, opinionated … about the places he’ll visit, but used to tolerate Do It All because once through the paints and the flat-pack furniture, past pets that are other children’s compensation for shopping, but boring and un-alive to Joe, away from the bathroom and kitchen displays, there is a gardening section. Its appeal lies not as one might hope in the scent of spring over the north London suburbs from the living, shivering walls of shrubs and potted plants with flimsy petals; what he loves are the garden sheds and summer houses. He scampers out to that row of creosote-brown boxes, their backs to the perimeter fence, skipping from one to the next, letting himself in, closing the door, clomping on the wooden floor, peering out through the window if there is one, opening the door, running to the next, playing Goldilocks, if only he knew who Goldilocks was.
I needed, I forget now, a screwdriver I think, and led him along the aisle where they hang from their hooks like bats. His hand freed as I reached up, Joe took off. No problem, he always goes the same way, being a creature of a permafrost habit, and in the two seconds it takes me to find the one I want I’ll be on his tail and soon snaffle him up on the way to the garden sheds.
But as I turn, reach the end of the aisle and look right towards the sliding doors of the gardening section, Joe isn’t there. Never is the sense of absence so visceral as when your child disappears. My heart misfires under a sudden, suffocating dread. He couldn’t be that fast. Could he? He couldn’t be that fast. I’m on my toes to run, somewhere, everywhere, to shout, I look down the aisles ahead of me and see nothing but the bustle of strangers, I look left and … there he is.
There he is, sitting happily among the churning crowds of Saturday-morning shoppers. Sitting, with trousers and underpants around his ankles, feet swinging. Sitting, on one of the shop-display toilets.
‘Please God,’ I think, in the way that first thoughts in shock often misbehave, ‘let it not be on CCTV.’
Joe is wearing a smile of seraphic serenity; I’m not quite so placid. I picture the grainy images, the zoom picking out the crime in commission, the high-angle proof, time-code in the corner. Scenes from CrimeWatch ticking through my imagination, I wonder if there’s any way out of this before I’m fingered as the delinquent parent of the cheerfully widdling boy, plainly no longer toddler enough to be excused this indignity. I know, I’ll gesture to Joe from a safe distance, under cover of the special-offer pine shelving: ‘Pssst, rendezvous in the sheds, sunshine, the summer house, third from the left.’
Our escape plotted, I sigh and walk over to him to pull up his clothes. He’s giggling, delighted with himself, the object of raised eyebrows but not a word from the crowds of passers-by, stuck I imagine somewhere between disgust and discretion. Standing Joe up, he leans on me and I glance over his shoulder to assess the damage, finding myself thankful it isn’t worse than the shallow yellow puddle I see sitting so oddly undiluted in that pit of enamel, wondering where to go. Thankful.
At the time it feels mortifying, but here’s the real problem: how do I explain to Joe where he went wrong? It’s not real, Joe – that is, it’s real but it doesn’t work – that is, it does work, but it’s not … plumbed in. Hopeless; complexity crowds in from the moment I begin. I say none of this, of course; at the time, all I can think of is: ‘Not in shop, Joe; not in shop.’ Don’t do it in Do It All. But not even that is accura
te, I realise, as we pass the designated, plumbed-in facilities on the way out, though even the reality of the genuine article is rendered equivocal by an ‘out of order’ sign on the door. For Joe, the idea that this or any other toilet could be in any sense unreal would be absurd. Unreality, even qualified reality, probably has little reality for him: looks like a toilet, feels like a toilet, therefore is a toilet.
Joe’s problems were once thought to be a result of Hartnup disease, named after an Irish immigrant family in London in the 1960s who, the story goes, used to piss in the back garden with such acidity that it left circles of scorched brown grass. It’s relatively easy to diagnose, you could probably get halfway there with a piece of litmus paper in the urine. Coincidentally, Joe’s first wet nappies evacuated the house. I wanted a toxic-hazard sign, the kind seen on the side of tankers telling the fire brigade what to squirt on the stuff inside, while the police throw a cordon around to keep passers-by at bay.
Over-anxious, pushy-middle-class, think-they-know-it-all, for-God’s-sake-relax parents; this, we felt, was our allotted category in life when in the early days we used to say that something about Joe didn’t seem right, and few agreed. Or else, if he wasn’t developing normally, it was because compared with his sister he wasn’t receiving enough attention, his father didn’t read to him as much, what do you expect? So I read to him, and he wrestled out of my lap every time, upset and uninterested. It’s extraordinary, this instinct to blame the parents, and most notorious in the case of Bruno Bettelheim who coined that perniciously influential notion of the ‘refrigerator mother’ to explain the emotional withdrawal seen in children with autism. What was wrong with these children, Bettelheim believed, was that their cold-fish mothers didn’t cuddle them enough. When I told some of Joe’s stories in a short series on Radio 4, one listener wrote to say that if only the four family members would sit down and admit their mistakes then Joe would get better.
Recognition that there was a developmental problem, any problem, took nearly two years in Joe’s case. Giving it a name, Hartnup, an irrelevant name in my view, took nearly another. In Hartnup, the urine is acidic because it contains higher than normal levels of amino acids which the body is adept both at keeping out and getting rid of. This strange reaction to proteins was the only potential culprit we could find for Joe’s disability, with the level of two amino acids in particular giving concern: threonine and tryptophan. The diagnosis suggested an obvious chemical remedy: if there wasn’t enough of the stuff in there, put in some more. It wasn’t so easy, the body’s defences being every bit as good at filtering it out before it found its way to where it was thought to be needed, in the cerebro-spinal fluid. Researchers in California had suggested that by bolting these amino acids onto alcohol molecules to create tryptophan ethyl ester and threonine methyl ester, the alcohol would smuggle the proteins through his digestive wall and across the blood/brain barrier, falling away as they did so: drop some hooch the way of the body’s overactive border defences to confuse them and the immigrant proteins would escape to enrich the chemical stew on the other side, in his brain. We tracked down a source of these adapted proteins and applied the theory for several years, hoping to detect a practical difference. I don’t think it made any. To the consultant’s credit, she never thought it would.
Based in Crewe, CLIMB (Children Living with Inherited Metabolic Diseases – previously the Research Trust for Metabolic Diseases in Children) campaigns and fundraises for research into metabolic disorders, of which there are some 1,300. It also puts parents of those affected in touch with one another. Hearing that Joe had a variety of Hartnup with neurological symptoms, they told us it affected perhaps half a dozen people in Britain and gave us details of two other families: one in Ireland, one in Australia. Neither case bore much resemblance.
In Do It All some four or five years on, that long saga of blaming the parents, doubt that there was a problem at all, and the many wrong turns we all took would have felt unreal and irrelevant, a whole dockside of red herrings. Given time, the fact of Joe’s problem became glaringly obvious, though even at seven one consultant was calling him ‘not at all autistic’ while another called him ‘a classic case’. One reason it takes so long to be sure is that autism has no aetiology, no assigned cause, and it is through unusual social behaviour that Joe’s condition most conspicuously declares itself, which means that diagnosis is easiest when he most blatantly breaks social rules, rules which don’t take proper shape until children are generally well into nursery age or later. Biology has proved useless, so far.
The social rules, from the point of view of an autistic child, are a thicket of all-too-subtle traps and pitfalls. I beat out my brains trying to think how to simplify these rules for Joe and, later in the day of the Do-It-All débâcle, experience a shortlived rapture – such is the stuff that passes for enlightenment when stuck in this mental rut – that weeing is best explained as something you don’t do in front of other people, until men’s urinals spring to mind. With that failure, I reflect that I’m not quite sure in any case how to explain to Joe within the scope of the language he understands the idea of absence, as in the absence of other people, for it requires the absent thing to be invoked, to be present in the imagination before we instantly show it the exit and admit that it is not present really, not physically, the very playfulness with the unreal that Joe finds so difficult. All this is neatly expressed from a young age by the rest of us in a simple phrase such as, ‘not with other people about’. Those few short words suddenly stun me with their complexity. I realise I’m incapable of unpicking their meaning into component ideas or stating their essence in a way Joe could understand, and the thought takes a cattle prod to familiarity, so wrecking the whole project of simplification. Then, catching myself ruminating on the ontology of British attitudes to urinating, I’m a mess of laughter.
Composed again and wondering if toilet etiquette isn’t after all the apotheosis of the human condition, I reflect on what makes the rules so complicated and why the rest of us learn them with such fluency. I see that in the absence of the normal child’s precocious absorption of social norms, I’d need to explain explicitly and in detail to Joe a bewildering variety of elaborate concepts – privacy, embarrassment, hygiene – a quick word like ‘dirty’ used as a moral metaphor, the sort of tool we typically use, just wouldn’t do. I instantly see the dismal fact that I haven’t a prayer.
How do the rest of us manage? One answer is with the help of those now familiar sidekicks, mind-reading and its near relative, acute self-consciousness. Only humans blush, and for that remarkable reason: our presumption to know, without them telling, what others think of us. So called first-order emotions include happiness, anger, fear and surprise and are expressed easily by autistic children, though sometimes in surprising contexts. Privacy and embarrassment depend on the second-order emotions of guilt and shame, which rely on a richer self-consciousness, a sense of how we appear to others, which Joe hardly seems to express at all.
Our other advantage, the critical and related one at issue here, is that we, unlike Joe and his schoolmates, have a strong capacity for the unreal. This makes the idea of a display toilet more easily comprehensible to us, but it does much more than that. One example from a real case hints at the distinction: an autistic adult with above average IQ was told that the drinks were on the house. He understood this to mean that if he wanted a drink then ‘on the house’ was where he’d have to go. He was, as one writer put it, unable to escape from the salience of reality.
The unreal has many forms of which pretence, irony, metaphor and imagination are just a few. Between them, these gifts unlock immense possibilities of meaning and understanding, and nowhere more so than in relation to the normal traffic of our social world. Important as any among them when it comes to learning correct behaviour, I believe, is storytelling.
In his autobiography and memoir of reading, Francis Spufford writes of the power of the words that came foaming through the fiction of his
childhood:
They help form the questions we think are worth asking; they shift around the boundaries of the sayable inside us, and the related borders of what’s acceptable; their potent images, calling on more in us than the responses we will ourselves to have, dart new bridges into being between our conscious and unconscious minds, between what we know we know, and the knowledge we cannot examine by thinking. They build and stretch and build again the chambers of our imagination.
If Spufford is right about the developmental benefits of the unreal, one can quickly speculate about the effect on Joe, who in common with most autistic children has little sense for narrative, seems uncertain about the borders of the fictional, and performs almost no socio-dramatic play. Could it be that the difficulty he has negotiating social occasions, in Do it All and elsewhere, is a direct consequence? Are the chambers of his imagination unbuilt, unstretched, his boundaries of the acceptable unformed in part because stories make no sense to him?
Spufford titles his opening chapter ‘Confessions of an English Fiction Eater’. He reads fiction with a hunger for anything absent at the time of reading; any greedy wish will do, he says. For what fiction does is to give breath to what is not. It allows us to explore other possibilities, see them made fictional flesh, work out the consequences of transgression, to inhabit ideas. Moreover, we do so in a controlled environment where no one is really hurt, no monster loosed, no heart broken, no tragedy sprung, no one punished, but where we can sample our feelings in such cases, play with them, give them exercise, become better acquainted with them. We need a place where the human spirit can experiment, among the test tubes in laboratories of mad professors, the fierce emotions of star-crossed lovers, children trapped on desert islands. Fiction, in this account, is a variety of educational play or pretence. Stories focus emotions for us, as Spufford says; we enfold ourselves into them, and in that embrace we learn about the emotions and ourselves. Here is a great playground of the unreal where Joe seemingly cannot go, an exploration of social experience that Joe can never undertake.
Joe Page 11