‘I see this sort of thing all the time,’ said the specialist. He gives a little sigh. ‘And no, it’s not your fault. Asperger syndrome has probably always been around, but now we have a label for it. It can be hereditary. But it can also come up right out of the blue without any family history.’ My mouth was dry as he continued. ‘Usually it starts to reveal itself from the age of eight months or so. But some mothers say they suspected from the beginning that something wasn’t quite right.’
I thought back to Tom’s birth. His eyes had darted from side to side as if to say, Where the hell am I? He’d been much quieter than the other babies on the ward. But when he did cry, it had been a shrill, unhappy cry that scared me rigid. Or was that because I was scared myself? Terrified of being a new mother at a time when my career was just taking off. When Ed and I were still clumsily trying to start our marriage over again.
From the minute I had shown my husband the blue line on the pregnancy result kit, it had become an unspoken agreement that we would no longer ‘keep trying’ to make our marriage work. We would make it do so. My mind had gone back to my teenage days when I had overheard my mother accusing my father of having an affair. I had been terrified they would break up, and so relieved when they had stayed together. Many children, it is true, grow up perfectly well in a single parent family. But then Carla and Francesca had flashed into my head. Did I really want to end up like them?
And anyway, Ed was a changed man. ‘A child,’ my husband had said, placing a hand on my belly. His eyes had shone. ‘Our child. It can be our new start.’
‘But how will we manage?’ I’d demanded. My voice had sung with guilt, anger, resentment and downright fear. ‘Everyone wants to use me now after the case. I’ve been promoted. You haven’t even got a job.’
If that sounded cruel, I’m ashamed to say that I intended it that way. I was livid with Ed because I was livid with myself.
‘Then I’ll work from home and look after him at the same time.’
I have to admit it. Ed was a natural. He doted on Tom. My sister-in-law’s words proved true – at least at first. Fatherhood grounded him. He even gave up alcohol for a while, although he now just tries to drink in moderation. Even when our son screamed blue murder as we tried to lift him out of his cot or dress him, my husband showed a patience I had never seen before. Later, when Tom refused to play with the other toddlers in the postnatal group and even bit a little girl when she tried to take his precious blue toy train that went everywhere with him, Ed merely declared he showed ‘character’. ‘He’s much brighter than the others,’ my husband would say proudly. ‘This morning he actually told one of the other kids to “give me space”. Can you believe it? It’s almost as if he’s a mini-adult. And he can count to ten on his fingers. I bet not many two-year-olds can do that. Just imagine what he will be like when he’s older!’
But then Tom’s behaviour began to get more extreme. He asked one of the other mothers why she had a ‘hairy moustache’. (Plain speaking can be another Asperger syndrome trait.) He threw his green plastic beaker at another child, causing a big bruise on his cheek, because it wasn’t the usual yellow colour. Ed was asked to find another playgroup.
At home, it was just as difficult. ‘No,’ snapped our son when I tried to make him put on a soft blue velour jumper which Ross, his godfather, had sent him for Christmas. ‘I don’t like the feel on my skin.’
Even Ed began to worry. ‘What’s the matter with him?’ he asked when Tom refused to go to bed because his duvet had been washed in a new soap powder and smelled ‘wrong’. ‘The mothers at the new playgroup are giving me the cold shoulder now. They seem to think it’s my fault.’
My parents had once been accused of poor parenting too.
‘There has to be an answer,’ Ed insisted.
Through our GP, we found a specialist who eventually gave his opinion. Asperger’s. An autism spectrum disorder, as well as obsessive behaviour. ‘Very little that one can do,’ the specialist said. ‘Could try cutting out certain foods … these children are usually very bright … see it as a different mindset …’
Tom, I told myself in my darkest moments, was my punishment for something so terrible that I could barely admit it to myself, let alone anyone else.
As Ed wept in my lap (‘I’m trying, Lily, I really am’), I wanted to tell him this. Yet how could I? He would surely leave if he knew what I had done. A child like Tom needed two parents. We were bound together now, just as my parents had been.
‘Let us help,’ my mother finally said when she had come up to London for her usual monthly visit. By then, Ed and I had moved to a three-bedroom Victorian terraced house in Notting Hill, thanks to his grandfather’s death, which had released the trust fund money. Meanwhile, my healthy salary had meant that Ed could be a stay-at-home dad while trying to make it as a freelance artist. That was great in theory, but in practice it was proving impossible for Ed to work while looking after a child who could do complicated long-division sums in his head one minute and then jump up and down screaming that his hands were ‘dirty’ from play clay the next.
‘We could look after Tom during the week,’ Mum added, looking round at the untidy sitting room, strewn with toys and half-finished sketches, where Ed had clearly been trying to work while saving Tom from himself. (A few days earlier he had trapped his finger in the window after undoing the knot in the sash cord ‘to see how it worked’.)
‘It will give you some time to yourselves.’
Mum was always a bit nosy when she came round. In the years after Daniel she’d become more interfering, as if his absence had left a hole which she needed to fill by playing a more active role in my life. But it became more intense when Tom was born. Had she noticed the telltale signs in the spare room? The book under the bed. Ed’s clothes in the pine chest of drawers. The half-empty bottle of wine in the bottom of the wardrobe. (Not mine – I’d given up drinking as soon as I was pregnant.) All clues that this was the room that my husband usually occupied at night.
‘It’s easier for my back,’ he had said when first suggesting separate bedrooms. I was hurt initially. But the more Tom yelled when I tried to brush his hair (‘It hurts my head’) or when someone moved his ‘special cup’ (‘Where is it, where is it?’), the more irritated Ed and I became with each other. Sometimes it developed into full-blown rows.
‘I can’t cope with two kids having tantrums,’ I snapped during one particularly nasty argument when Ed had told Tom to ‘get a grip’.
Tom’s face had creased into confusion. ‘But where do I find one?’ he had demanded. Language had to be crystal clear. ‘Pipe down’ got confused with my father’s pipe at home. ‘Having your head in the clouds’ meant, in Tom’s book, that you had somehow flown up into heaven and got stuck in the sky. ‘Can you go to bed’ meant ‘Are you capable of getting into bed?’ A question, rather than an instruction.
Anger or tears on our part did nothing. Tom seemed to have a problem recognizing other people’s emotions. ‘Why are they crying?’ he asked one day when seeing a stream of refugees on television.
‘Because they don’t have homes any more,’ I explained.
‘So why don’t they just get some new ones?’
Some of these questions might be normal in a very young child. But as Tom grew older, they became increasingly inappropriate.
It was exhausting. Almost like the bad old days at the beginning of our marriage when we had nearly split. But Mum’s suggestion saved us. Tom moved to Mum and Dad’s in Devon by the sea. There was a school down the road where my brother and I had gone. They’d had more ‘special children’ like him since then, the head told us brightly. We mustn’t worry. And Ed and I would come down every weekend to see him. There was no doubting what the move would do for my parents. Since Tom had been born, my mother no longer had spells when she thought Daniel was still alive. She had another mission now: her grandson.