And then I had Ben.
* * * * *
‘You need to deal with his stimming now, before it gets worse.’ The psychologist was young and definite.
I wanted to say: don’t tell me what to do. Instead, I said, ‘We don’t use the terms “stimming” or “obsession”. We think of numbers as a strong interest of Ben’s.’
‘Yes, of course,’ she said. ‘But would you say that Ben’s interest in numbers is preventing him being interested in other things, in people, in learning other games and so on?’
‘He’s not interested in other things, no.’
‘So …’ I could hear a slight triumph in her tone and felt sure she didn’t like me much. ‘Let’s talk about how we can reduce the number obs– interest.’
This was when she explained our options: extinguishment, quarantine or integration. It didn’t seem to strike her that the words themselves made this seem like a punishment. The choices boiled down to: forbid Ben access to numbers (how, I wondered?); limit his access; or turn his interest into something more ‘functional’. The thing was that I agreed with her, but I couldn’t bear to remove from Ben his lifeblood, the only meaningful thing in his world.
‘But numbers aren’t meaningful, are they?’ she said.
* * * * *
Overheard, one sister talking to another:
‘I know, I do exactly the same. I count the steps of every stairway; I count every slice I make when I cut up a banana; I always notice car number plates and bus numbers. I’ve always done it.’
* * * * *
One of our delights as children was to play with five boxes of buttons my mother kept in her sewing cupboard. They were mostly old chocolate boxes made of tin with pictures of fluffy cats and idealised dogs on them. Each one was full of buttons that we could tip onto the floor. The five boxes were graduated by size, which corresponded to the size of the buttons inside. The largest box contained the largest buttons and so on. I liked the smallest, a white cardboard box with flowers on it that still smelt faintly of something sweet and slightly exotic – vanilla perhaps. In this box there was a cute ladybird button, a brass squirrel and several transparent buttons that were curled up into cylinders like people did with their tongues for fun. These were my favourites. I loved the feel of the buttons running through my fingers when I tipped them from hand to hand or placed them inside their square white home.
It was a surprise to see the button boxes again one day when Ben and I visited my mother. I hadn’t realised she had kept them.
‘Children love buttons,’ said my mother. She was right; even Ben got interested in them. He was four years old at the time and we were struggling to find anything that would amuse him. He certainly didn’t play like other children. But the buttons were perfect for him, because he could lay them out on the rug, grouping them by size or colour and matching any that looked the same. He understood the size distinctions, too. He even made my mother label each box with a number, so that the largest buttons were in box one and the smallest in box five. Strangely, he too liked the transparent tongue-curl buttons best.
I remember that visit to my mother well, because after Ben had finished with the buttons, my mother found several other activities for him: smelling each of her perfume bottles, counting and reading the names on her long row of herb and spice jars, placing a single soft toy on each of her wooden steps (this made me nervous because of the gaps between each step and Ben’s soft, floppy body) and finally banging away on the piano and learning the name of each note. As my mother and I sat drinking tea to the sound of the piano-bashing, we were both in awe, I of my mother’s ability to amuse Ben and she of Ben’s intelligence and memory.
‘He can read all those spice jars,’ she said. ‘He even remembered “cardamom” and words like that. Has he seen those at home?’
‘Ah, no.’ The idea of me managing to cook with spices at that stage of my life was laughable.
‘He understands size and categories with the buttons. And he seems quite musical.’
‘Maybe.’
Personally I didn’t think that hitting random keys of the piano constituted musicality but I guessed that my mother – like me – was still coming to terms with the idea of Ben being autistic. She wanted to focus on his abilities, not his disabilities.
Then my mother said, ‘You know, Rachel, you can’t really call Ben handicapped. He just has a very particular genetic inheritance.’
* * * * *
When my parents talked about mathematics they often stood in the kitchen. Or rather, my mother moved around preparing dinner, and my father bounced up and down on a small square of floor in front of the most useful cupboard. As they talked about quadratic equations or topological vector spaces, my mother would gently push my father to one side so that she could reach inside the cupboard, and after she had closed the cupboard, he would hop back in front of it. If he was only mildly excited or interested, he would just do his hop, balancing first on his right foot and then moving the left beside it for a quickstep before moving back to the left again. If the conversation was going well, my father would occasionally tap his forehead with the back of his right hand. When things heated up, he would add a left-handed slap to the back of his head just before the right hand hit the forehead, creating a kind of chain reaction. As the dinner neared preparation, there would be a flurry of activity in that kitchen, my mother stirring pots and lifting things out of the oven (she was feeding seven every night), and my father bouncing and hopping, slapping and tapping. Just when the conversation and the dinner were reaching a head, my mother would dash out into the passage and ring an old cow’s bell she’d picked up in Switzerland, and one of us kids would dart into the kitchen, dodging wordlessly between my parents to collect the cutlery to set the dining-room table. A few minutes later, the bell would go again, signalling time to eat and a temporary end to the mathematical dialogue.
* * * * *
There is a game that some parents of autistic children play, where they try to determine from which side of the family the autism has come. This family blame game is an alternative to the vaccination, birth-trauma or toxic-chemical blame routines. One mother I met told me that she felt guilty because the autism must have come from her family; she had a cousin with autism and her husband didn’t know of any autistic people in his family.
‘But does it matter? I mean, do you need to know, even if you could?’ I asked her.
‘I feel bad,’ she said. ‘If it wasn’t for me, my husband could have had a normal child.’
Robert and I have never played this game. I didn’t see the need to find or create a ‘reason’ for Ben being who he is. Nonetheless, it’s hard to escape noticing aspects of my own family’s behaviour that verges on the autistic spectrum. In one of the first books about autism I read – a book full of depressing statistics and unwelcome generalisations – I saw the sentence: ‘The presence of odd family members … as well as very mathematically bright but socially awkward relatives, is more frequent in families with an autistic child.’ I also distinctly remember reading and telling Robert that of all parental occupations, the coupling with the statistically highest likelihood of having a child or grandchild with autism is that of two mathematicians. I remember reading this – even the shape of the print on the page – but now I can’t find the reference anywhere. Did I make it up? Did I need a reason for Ben’s autism, after all? Even if I did make this up, I know now that it is roughly accurate, because research has shown that mathematicians have a higher rate of autistic-spectrum conditions than the general population, and that the parents and grandparents of children with autistic spectrum conditions are twice as likely to work as scientists, mathematicians and engineers than the parents or grandparents of non-autistic children.
When I suggested to my sister Megan that perhaps our father (who died before Ben was born) had a few mild autistic-like traits, she said, ‘No, he wasn’t like that’.
‘Wasn’t he?’ I asked. ‘I always thought hi
m a little unusual.’
‘Oh no,’ she replied, quite upset, ‘I don’t think of him that way at all’.
I changed the subject. I didn’t say to her that the thought of something of my father travelling through me to my son was a comfort to me, a feeling that Ben is not such an outsider in the world after all.
* * * * *
Ben’s love of numbers is both mystical and pedestrian. It is unrelenting and ever-present. Not a day goes by when he doesn’t count or talk about or write down numbers. The American diagnostic bible on ‘mental disorders’, the Diagnostic and Statistical Manual of Mental Disorders, or DSM IV, describes Ben’s love of numbers as ‘a preoccupation with a stereotyped and restricted pattern of interest that is abnormal in intensity and focus’. Psychologists have described his behaviour as ‘obsessional’, ‘compulsive’ and ‘ritualised’. I prefer to call him passionate.
What can it mean to have a passion for numbers? Mainly, Ben just loves the physical shape and form of them. Whatever size or colour or font or material a number is made of or written in, he dotes on zero to nine, just as I adore every inch of his body, every expression of his face.
This is how Ben’s passion started. Some time before he was two, I stuck on the wall a child’s poster with the numbers one to twenty and illustrations to match. I put it up because it was colourful and the hallway was dingy. I read it to Ben once. He spent a long time looking at it that day, and the next day, and the day after. Then he wanted to ‘hold’ the numbers. So I made some numbers out of coloured pipe cleaners. These became his most treasured possessions. He laid them down on the floor one after another, saying the numbers as he did, ‘one, two, three’, and so on up to twenty. Then he started going beyond twenty. When he came to numbers requiring two of the same digit, like twenty two, he used his hand for the second number. How did he know how to count beyond twenty? This I don’t know. It seemed to be innate. A two-year-old unable to eat with a spoon, uninterested in toys, and calling himself ‘you’ instead of ‘I’ was able to count to 100 and beyond. His face was rapt when he used the pipe cleaners for this purpose. He laid them down with such reverence it was like a form of worship. He was so content I could have gazed at his counting face for hours.
After the pipe cleaners, Ben discovered the joys of birthdaycake candles shaped like numbers. But they broke too easily when he played with them, so we found plastic magnetic numbers in a toyshop. He collected handwritten numbers on paper, numbers cut from wrapping paper, golden cardboard numbers, a set of metal numbers from the hardware store intended to be used on letterboxes, numbers for use in the bath, numbers made of playdough, shells that ‘could be a six or upside down could be a nine’. And so it went, a cupboard full of sets of numbers, as if collecting the objects was the sole purpose of his life.
Over a period of months, Ben’s interest developed. He began to love numbers in a second way, for what they represented, just as a mother will love best the photographs of her children that remind her of happy times. He loved that numbers on letterboxes tell us the number of the house, that the age we are tells who is older than whom, that numbers can represent so many different things – weight, height, currency, size. Clocks, calculators, thermometers and measuring tapes were all added to his collection.
‘He’ll grow out of it,’ my friends told me.
‘He’s so intelligent,’ my family said.
‘Your parents are mathematicians,’ people reminded me. ‘What did you expect?’
What did I expect? We expect many things of our children. Most of the time we are only aware of these expectations when something happens to make it impossible for them to be fulfilled.
Just as Robert and I were thinking that we should start to teach Ben arithmetic, he found it for himself. He discovered a third way to enjoy numbers: the way they work. That one plus one equals two and then two plus one equals three made sense to him. He began to do strange feats of simple arithmetic. He spent hours adding numbers in his head. ‘Two plus two is four; four plus four is eight; forty-four plus forty-four is eighty-eight.’
Soon after that, I would hear him reciting the times tables to himself in bed at six in the morning, starting with ‘one two is two’ and ending with ‘twelve twelves are one hundred and forty-four’, complete with the intonation and accent from Don Spencer’s musical times-tables CD, which I had foolishly played to him. This may have led him to a fourth way of loving numbers – as an ordering principle. Numbers are predictable and controllable and they never end. He realises you can count forever.
* * * * *
Robert and I finally agreed to ‘quarantine’ Ben’s numbers. But instead of limiting him to using them once a day, we did the reverse: he was not allowed to talk about numbers at dinner.
‘Why can I not talk about numbers at dinner?’ Ben asked yet again.
‘Remember we talked about it. Not everyone finds numbers as interesting as you do.’
‘Why not?’
I didn’t really know how to answer that one.
‘Let’s talk about our day,’ suggested Robert. ‘What did you two do after kindy this afternoon?’
‘We went to the park, didn’t we, Ben?’ I said.
‘Yes. First we passed number forty-one, then we passed number thirty-nine …’
‘Stop!’ I said, rather loudly, holding up the palm of my hand. ‘No numbers.’
Robert put his hand over his mouth.
‘I know what else happened,’ I added hurriedly. ‘Auntie Liv rang, didn’t she, Ben?’
‘Yes.’
‘Ben talked to her for a bit, didn’t you?’
‘How old is Auntie Liv?’ asked Ben.
‘Ben, you know she’s thirty-nine,’ I replied.
‘Mum is forty-one. Daddy is fifty-five. Auntie Liv is thirty-nine. Granny is …’
‘Ben – enough! No numbers at dinner.’
Ben put on his hurt face. ‘I don’t want any more.’
‘Finish your dinner, please.’
‘No, I don’t want to.’
‘You need to eat proper food. Just have four more spoonfuls of rice and then you can get down,’ I said.
‘One, two, three, four,’ he chanted, stuffing them all into his mouth at once and then looking like a cartoon character, cheeks so bunched up he couldn’t chew.
‘That went well,’ said Robert in his dry way. I started to laugh. Ben watched me for a bit and then opened his mouth so that all the rice came spurting out onto the tabletop. He jumped off his chair and ran into his bedroom shouting, ‘One, two, three, four. One, two, three, four.’
Robert peered at the bits of rice in his red wine and then drank it. ‘He’s a clever little fellow, isn’t he?’ he said proudly.
* * * * *
Overheard, Ben to his teacher:
‘Actually, you are wrong: today is the sixteenth, not the fifteenth.’
* * * * *
I wanted to understand why Ben was so obsessed with numbers. Our paediatrician said that obsessions like this were just part of the condition of autism and that it was probably a way for Ben to create order and structure in his life. This sounded a bit vague to me, so I did some more of my (obsessive?) reading about autism. Several months and about twenty books later, I decided that the paediatrician had made a fairly good summary of the situation.
‘I should hope so,’ said Robert. ‘That’s why we pay so much to see him.’
But it seems to me that researchers don’t really know why people with autism fixate on particular obsessions, only that they will have at least one area of obsessive repetition, whether this is flapping their hands, touching the corners of doors, learning all there is to know about trains or insects, memorising phone books or simply running sand through their hands all day. It is partly a retreat to the concrete because it is so difficult for someone with autism to understand other people and abstract ideas. Repetition is also a way of regulating sensory stimulation, of dealing with sensory overload and high anxiety. The repeti
tion helps calm and regulate.
It has also been suggested that people with autism focus on small details because they lack the ability to see ‘the big picture’, to integrate things and make sense of the world. Their ability to shift attention is also impaired – it’s hard to move on from one thing to the next, hence the desire for sameness.
The most recent theory about autism is that it is an extreme form of the ‘male’ or systematising brain. Our brains are made to understand systems and how physical objects work, but some people have an extreme ability to understand ‘folk physics’. This comes at a cost: their ability to understand people may be limited.
But why numbers? Numbers are a common interest for people with autism. I wanted to know if there was a reason for this.
‘Why do you need a reason?’ asked Robert. ‘Why can’t you accept Ben as he is?’
‘I do accept him. I just want to understand.’
‘What’s to understand, Rachel? He likes numbers.’
* * * * *
Overheard, my mother talking to my brother:
‘Today is a very special day for me. Today, Olivia is exactly half my age.’
‘She has been all year, hasn’t she? Or, do you mean half your age to the day?’
‘Of course! It wouldn’t mean anything otherwise.’
* * * * *
Ben’s world, like that of most people with autism, is full of confusion, uncertainty and unpredictability. This is partly because of his difficulty in understanding other people and partly because he experiences every object, every person, every thought as a separate unique event, with no necessary or logical connection to any other event. What is it like to see each tree as an individual as different from another tree as it is from a car, a dog or a man? In a way, it is a vision of total equality. All things are equal; no one, nothing, is elevated. All sense of meaning fails because how can we create meaning without metaphor, categories and hierarchies? Without taxonomy we have chaos, just unmediated, inexplicable experience. The world presses upon us. Our own bodies press upon us. There is no sense to be made of sensation. This is Ben’s world – one of experience and perceptions without order, definition or explanation. Could this be anything other than frightening?
The Best Australian Science Writing 2013 Page 10
