Daniel Isn't Talking (22 page)

To ask a person to do nothing for their child or to do very little is unfair. For them to do nothing means they have to fight the overwhelming desire to push away the danger, to run through the flames, to slay the dragon. However hopeless the situation might appear, it is infinitely more difficult to do nothing than even an ill-considered something. I knew a man whose teenage son was stabbed to death in the early hours of a Saturday night by kids his own age who wanted his trainers. This was some years ago. His father had repeated dreams – the day and night dreams that I came to be familiar with after Daniel's diagnosis – in which he was there when it happened, just behind the gang as they circled his boy. There, hidden in the luxuriant green of unkempt bushes, he would be crouching. Or he stepped off the bus just in time to reach over and pluck his son, vibrant and alive, from the hands of his attackers. In his dreams the five-inch steel blade that pierced his son's chest never so much as scratched his skin. Instead, he took his child in his arms as he had as a baby, running at a supernatural speed, flying even, not knowing where
he was going but knowing it was away. Away from threat and danger and harm, away from four youths and their deadly, sharpened blade.

But the dreams were only dreams. The reality was the boy died. The father slept.

My reality is that my child lives peacefully within a dysfunctional brain while I search madly – tear myself apart – trying to think for the both of us how to get out of the burning building of autism. Even using this method – this play therapy mixed with applied behaviour therapy and whatever else Andy brings to bear – there are limitations. With every learned word or spontaneous moment of play, I see Daniel becoming more like any other child, less ‘autistic'-seeming, and I know that if he will interact with others as he is now interacting with Andy, with me and with Emily, his life will not be entirely ruined by the condition. But there is also a time factor. As he develops so do all the other children around him. He has to race to catch up or never catch up at all. I understand this very well. It is almost as though someone has told me, ‘If he is going to escape the fire, he must do so early before the roof caves in.'

Daniel plays with Teletubbies and Tweenies, with cars, with trains (of course). He runs with Emily, chasing her with good-heartedness and smiles. He can talk and he can tell me what he likes and doesn't like. He will listen to stories if you present them with enough animation and will draw pictures if you bribe him with chocolate. All of this shows enormous progress; impressive, extraordinary strides. I don't mean to trivialise this progress or make it count for nothing. But he hasn't left the burning building.

The doctors have a way of speaking to me that is unnerving, strange. It used to be, for example, that when
I went to see doctors they asked me what the trouble was. But now they have a mildly pitying look in their eyes. ‘Why do you think you are here?' says this one, who is supposed to be a specialist in neurological conditions.

By accident? By abduction? Is this a philosophical question? I have to play it straight. Part of being the parent of an autistic child means humouring the same people you pay great sums to.

‘He doesn't walk at all well and he says his legs hurt.'

The doctor looks down at Daniel, who is seated on the floor with his trains. If we wait long enough Daniel will look up, rub his knee and say, ‘Leg hurts. My leg hurts.' He's been telling me this every day for a week.

‘That is because he's autistic,' says the doctor, a man with a coat, a stethoscope, a Physicians' Desk Reference, a computer and an examination table. So I guess he is a doctor.

‘What would the autism affect? The legs or the complaint that the legs hurt?' I ask.

The doctor considers this.

‘Well, either, really. It may not be his legs per se which are bothering him. It may be that something hurts him but he says it is the leg, even though the pain is from elsewhere.'

‘He knows what a leg is,' I say.

The doctor looks at me as though I am a bit of a problem myself. Nothing like his own wife, who smiles from the polished frames of several photographs, along with his children, all girls.

He says, ‘I look after the primary care of a residential school for autistic children. They say whatever pops into their heads or nothing at all.'

It occurs to me that you might as well say nothing at
all if whatever you do say is interpreted as gibberish. And I know the “school” he means. They call it a school because the residents in it are under eighteen.

Ten minutes later this same consultant is telling me Daniel can only be very literal. He can only say what he sees factually and that he cannot make things up. Cannot lie or interpret abstract concepts. This is because he is autistic. The doctor informs me also that Daniel does not feel pain like other children, normal children.

‘Wait, let me tell this to you once more,' I say to the doctor. ‘Let me start again because I truly believe you have the ability to understand.'

The doctor's face grows dark. He's dealt with autism mothers before. ‘Yes,' he says sharply.

Pointing to Daniel I say, very slowly, ‘He
says
his legs
hurt
.'

But the doctor is uninterested, already checking the next patient file, feeling no concern at all about anything Daniel says.

That same doctor told me that in the school over which he presides the children drink cow's milk by the bucket, can spin without becoming dizzy, and don't feel pain. I tried to tell him about a theory that autistic children have an intestinal problem and cannot digest cow's milk. That the milk does something to them that seems to make them more ‘autistic', and that removal of the milk may help. Not in all cases, but in some cases. Perhaps they ought to try getting rid of the milk?

‘Use goat's milk,' I said. ‘Raw, unpasteurised. Or if that doesn't work, use rice milk.'

‘They'd taste the difference,' said the doctor. ‘If you take away their milk, these children will starve.'

‘OK, OK,' I said. I understand the trouble with getting autistic kids to eat. I spend hours every day grating courgettes to hide in burgers, stirring organic egg yolks into dairy-free yogurt. ‘Then put one-tenth goat's milk into nine-tenths cow's milk. Every week add more goat's milk and less cow's milk. Then eventually get rid of the cow's milk. This works. I've seen it work.'

‘Your child is not so badly autistic,' said the doctor.

There was no point in telling this doctor that Daniel's initial diagnosis was moderate autism, not mild autism. Not Asperger's. Or about all the other kids I've heard of who have improved. So I said, ‘That may be true, Doctor. But to a mother there is no such thing as a hopeless case. Maybe you could just try –'

‘No,' he said, clearly annoyed. I'd touched a nerve with him. Perhaps another autism mother had suggested the same thing. He looked at me with the coldness of a tanker, set his eyes on Daniel and then on me again. ‘We don't have time for experiments.'

So they spin, all the children in his care. I'll never forget how the doctor said, just before we left, ‘They spin and they don't get dizzy!' as though this personal trait of autistic children was wonderful, exciting, something to build upon.

Today is a little exhausting. Daniel hops all over the furniture, running into the walls on purpose, not talking much. He visits me as I make his special muffins in the kitchen, colliding into me like a chuckling tornado. I am pleased when he grows dizzy and has to sit down. Normal, I tell myself. Stop fretting. He comes to me, his lips pursed like two sides of a peeled banana, giving me what looks like a monkey kiss. ‘I love you,' I tell him.

‘I love you,' he says. Is he repeating what I say as an echo, the way a parrot might? Or does he mean it?

‘Why do you love me?' I ask him. An inane question no child can answer.

‘You like trains,' he says. Does he have the pronouns correct? Or does he mean that
he
likes trains?

I point to my chest, ‘Me?' I ask. My heart lights up as he nods.

It seems to me I see autistic children everywhere now, at parks, at railway stations, in supermarkets, or just walking down the road. Some of the mothers, like me, are a bit preoccupied, a bit nervy. We have an instant affinity, a common ground. We waste no time, allowing for only the briefest of introductions. From such mothers I have learned that Daniel needs more zinc, more magnesium, more vitamin Β than other children. I have learned that Disneyland allows autistic children special passes so they do not have to wait in line, which will be great if I ever have the money to take the children there. I learn about free swimming at the local public pool, about ideas for how to teach language. They are big-hearted, open-handed. They are lovely.

Sometimes, however, even the parents annoy me. They say, ‘The hardest part is …' and then fill in the blank with something that isn't the hardest part at all. When others stare at you in public places or say some small insulting thing is not the hardest part. When relatives fail to understand or to help out is not the hardest part. The hardest part is what you think and feel privately in your own home, usually at night, often when alone. But we don't talk about that, the hardest part. Nor do we talk about the number of autistic children who drown annually, or get killed
running across roads or by swallowing wrong objects. We don't talk about our marriages, or our hopes for the future. We don't like to think of the future.

Some mothers appear to make a badge out of autism, behaving as though it is not a disability but a ‘difference' and that we shouldn't be seeking to cure these children. Understanding is what is in order, they cry, a broader mind, an enlightened perspective. What you know about such people is that they have a child who functions very well, who may have Asperger's syndrome and not full-blown autism, and that they have probably not scrubbed faeces from their carpet, or watched their child cry and rock in what looks like agony because he cannot speak. These people annoy me a little, although I admire how they cope, admire their presence of mind, their fearless defences of their children. But we've walked different paths, and they are talking about mine as though they've been there, which they have not, and will not. Because having a child with autism – at least the type of autism I have experienced – is less like walking a path than hacking at a jungle with a scythe, not able to see much in front of you at all except more stuff you have to clear or step over, or around, or through.

Still, Daniel has told me he loves me. If I allow myself, I can see that Daniel has begun to clear his own path, has taken up his own scythe. One day he will ask me what autism is and I will be tempted to hold it up like a badge and tell him it is a difference. Only a difference.

Tonight, for the first time since Stephen left me, I go out at night wandering the city in a haze of insomnia. I wake Veena before I leave, telling her I am going out, to please listen for the children, and that I will be back in a few
hours. They are asleep; they will not miss me, or know I've gone. She looks up from the bed, her hair splashed like ink across the crisp white sheets. She nods. Then she raises her hand to touch the side of my face, moving her head back and forth like a slow pendulum. She cannot understand why I am not afraid to be on my own, alone in the city, why I do not worry about myself but instead about others, always others. About my little girl who must go to school for some absurd number of hours the moment she turns five years old, about my marvellous son who spins and flaps his hands beside his eyes and must work a thousand times harder than other children just to understand the world. About her, even. Yes. Because I don't know who will value this flower of a woman whose brain consumes the works of Benjamin and Derrida while all around her people expect she has no real intelligence, being not only Indian but small, female, with a darker complexion than most others from her country.

This summer night is no proper colour for midnight, the stars hidden by clouds reflecting the moony orange glow of street lamps. This is London: you never see the real night sky but live beneath this nocturnal haze. The Underground entrance is full of cigarette butts and rolling cans. Down on the platform there are no bins, due to bomb scares, so crisp packets and sandwich wrappers scatter through open places, collecting in corners. The breeze is cool, a balm across my hot cheeks, like the breath of a parent who blows against the fever of their child, soothingly. I walk through the disparate groups that hang about such places, young people clubbing, couples hanging over each other, heading to one bed or another, businessmen late from important dinners, standing kerbside
just outside the station, hailing cabs. In my pocket is the money that Stephen gave me rolled in a band, thick as a cigar. A newspaper skids across the dirty station tiles, the headlines turning like a flip book's pages. I might walk now to the Italian pastry shop, except it wouldn't be open. And anyway, I know where I am heading. Standing in front of the turnstile, eyeing the slot for my railcard, I realise I am not here to wander aimlessly, to observe the world in my ruined state, to flee from my bruised heart, the desperation, the fear. I am no longer that woman; and I'm not in the least bit afraid. I put away the railcard, get out the money once more. When I turn now, it is as though I've split my life like a soft melon, into two opposing halves.

It is an easy drive, straight over Vauxhall Bridge.

The taxi driver is not talkative, not friendly. He pulls away from the kerb with a jolt and I steady myself in my seat. Leaning my head against the window, I feel the vibration of the taxi's engine, the swift swells and isolated potholes of the London streets. It is a city I would compare only to itself, majestic and impoverished, full of feverish lights, garish and improbable against the elegant backdrop of splendid buildings, of lurid advertisements that change every minute as the billboards exchange one set of women's breasts for another. There is traffic all the time, as in New York, but it is more lovely. With chains of lights across the river, bridges that stretch for miles if you stand at the railings and search, with parks deep green and undulating, and people from every nation, skin of every shade, like so many colours in a tray of chocolates.