My behaviour, however, did not improve. At age two I began to walkup to a particular wall in the living room and bang my head against it. I would rock my body backwards and forwards, striking my forehead hard, repeatedly and rhythmically, against the wall. Sometimes I would bang my head with such force that I got bruises. My father would pull me away from the wall whenever he heard the familiar banging sound, but I’d run back and start all over again. At other times I went into violent tantrums, slapping my head over and over with my hand and screaming at the top of my voice.
My parents called in the health visitor. She reassured them that head banging was a child’s way of soothing himself when he feels some kind of distress. She suggested that I was frustrated and under-stimulated and promised to help find a place for me at the local nursery. I was two and a half at the time. My parents were relieved when they received a phone call a few weeks later telling them that I had been accepted at the children’s nursery centre.
With the new arrival, my parents had to reshape the daily routines that they had worked out together over the previous two years or so. Nursery became a big part of that change. Their days no longer revolved almost entirely around me. I was always a light sleeper, waking several times a night, and was invariably up very early in the mornings. Come breakfast time, my father fed, washed and dressed me while my mother took care of my baby brother. The ride in the buggy to the nursery was an intricate mile long, past the Quaker cemetery where the nineteenth-century prison reformer Elizabeth Fry is buried, and a group of large flats, before coming to an archway leading onto a footpath and a series of street corners.
The nursery was my first experience of the outside world and my own recollections of that time are few but strong, like narrow shards of light piercing through the fog of time. There was the sandpit in which I spent long periods of the day picking and pulling at the sand, fascinated by the individual grains. Then came an obsession with hourglasses (the nursery had several of different sizes) and I remember watching the trickling flow of sand over and over again, oblivious to the children playing around me.
My parents tell me I was a loner, not mixing with the other children, and described by the supervisors as being absorbed in my own world. The contrast between my earliest years and that time must have been vivid for my parents, evolving as I did from a screaming, crying, head banging baby to a quiet, self-absorbed, aloof toddler. With hindsight, they realise now that the change was not necessarily the sign of improvement they took it to be at the time. I became almost too good – too quiet and too undemanding.
Autism as a complex developmental disorder was little known among the general public at this time and my behaviour was not what many assumed then to be typically autistic – I didn’t rock my body continuously, I could talk and showed at least some ability to interact with the environment around me. It would be another decade before high-functioning autism, including Asperger’s, would start to become recognised within the medical community and gradually better known among the public at large.
There was something else, too. My parents did not want to label me, to feel that they were holding me back in any way. More than anything else, they wanted me to be happy, healthy and able to lead a ‘normal’ life. When friends, family and neighbours invariably asked about me, my parents told them that I was very ‘shy’ and ‘sensitive’. I think my parents must also have been afraid of the possible stigma attached to having a child with developmental problems.
Another of my memories from my first months at nursery is of the different textures of the floor – some parts were covered in mats, others in carpet. I remember walking slowly, my head firmly down, watching my feet as I trod around the different parts of the floor, experiencing the different sensations under my soles. Because my head was always down when I walked I sometimes bumped into the other children or the assistants at the nursery, but because I moved so slowly the collision was always slight and I would turn a little and carry on regardless.
When the weather was warm and dry outside, the supervisors would let us play in a small garden that was attached to the nursery building. There was a slide and some swings as well as a sprinkling of toys on the grass: brightly-coloured balls and percussion instruments. There would always be plastic-coated mats placed at the bottom of the slide and under the swings, in case any of the children fell. I loved to walk barefoot on those mats. In hot weather my feet became sweaty and stuck to the mats and I would lift my foot up and put it down again to recreate over and over the sticking sensation on the soles of my feet.
What must the other children have made of me? I don’t know, because I have no memory of them at all. To me they were the background to my visual and tactile experiences. I had no sense at all of play as a mutual activity. It seems the workers at the nursery accommodated my unusual behaviour, because they never tried to make me play with the other children. Perhaps they hoped that I would begin to acclimatise to the children around me and interact with them, but I never did.
My father would always drop me off at the nursery and sometimes pick me up too. He would come straight from the factory, often still wearing his work clothes. He wasn’t self-conscious at all. He was necessarily a man of many talents. After arriving home, he would change and then make a start on supper. He did most of the cooking; I think it helped him to unwind. I was a picky eater and mostly ate cereal, bread and milk. It was a fight to make me eat my vegetables.
Bedtime was always a struggle – I often ran around or jumped up and down and it took a long time for me to settle down to sleep. I would insist on the same toy – a small red rabbit – to sleep in bed with. Sometimes I wouldn’t sleep at all and cried until my parents relented and let me sleep in their bed with them. When I did fall asleep, nightmares were common. One example remains with me to this day. I woke up after dreaming of a huge dragon standing over me. I was tiny in comparison. The same dream recurred night after night. I became petrified of falling asleep and being eaten by the dragon. Then one night he was gone as suddenly as he had appeared. Though I continued to have nightmares, they became gradually less frequent and less frightening. In a way I had vanquished the dragon.
One morning on the usual route to nursery, my father decided to take a different turning. To his surprise I began howling in my buggy. I wasn’t yet three, but I had learnt every detail of the journey from home to the nursery centre. An old lady walking past stopped and stared and then remarked: ‘He certainly has a good pair of lungs.’ Embarrassed, my father turned back and went the usual way. In an instant my crying ceased.
Another memory from my time at the nursery centre is of watching one of the assistants blow bubbles. Many of the children stretched their hands out to catch them as they floated over their heads. I didn’t put my hands out to touch them, but stared at the shape and motion and the way the light reflected off their shiny, wet surface. I particularly liked it when the assistant blew hard and produced a long string of smaller bubbles, one after another in quick succession.
I didn’t play with many toys at the centre or back at home. When I did hold a toy, like my rabbit, I would grasp it rigidly at the edges and move it from side to side. There was no attempt at hugging or cuddling or making the rabbit hop. One of my favourite pursuits was taking a coin and spinning it on the floor and watching it as it spun round and round. I would do this over and over, never seeming to get bored.
My parents remember me striking my mother’s shoes repetitively against the floor, because I liked the sound they made. I even took to putting them on my feet and walking gingerly around the room with them on. My parents called them my ‘clip clop’ shoes.
On one of my father’s walks down the street with me in the buggy, I called out as we passed a shop window. He was reluctant to take me inside. Normally when my parents were out they never took me inside a shop, because on the few occasions they had done so in the past I had burst into tears and had a tantrum. Each time they had had to make their apologies, ‘He’s very sens
itive,’ they would explain, and leave in a hurry. This time my cry seemed different, determined. As my father took me inside he noticed the large display of Mr Men books. There was the bright yellow shape of Mr Happy and the purple triangle of Mr Rush. He took one and gave it to me. I wouldn’t let go of it so he bought it. The next day we walked past the same shop and I called out again. My father went inside and bought another Mr Men book. This soon became a matter of routine, until he had bought me every character in the series.
My Mr Men books and I soon became inseparable. I wouldn’t leave the house without one. I spent hours in the evenings lying on the floor with the books in my hands, looking at the colours and shapes in the illustrations. My parents were happy to leave me to my obsession with the Mr Men characters. For the first time I seemed happy and peaceful. It also proved a useful way of encouraging better behaviour. If I could go a whole day without having a tantrum they would promise to buy me a new Mr Men book.
We moved to our first house when I was four. It was at the corner of Blithbury Road. The house was an odd shape with the staircase accessible only from a separate narrow hall adjacent to the living room. The bathroom was downstairs, a short walk from the front door. Sometimes when a family member or friend was visiting they would be surprised by drifting bathtime steam clouds as they entered the house.
My parents’ recollections of Blithbury Road are not positive. The kitchen regularly suffered from damp and the house was always cold in winter. Even so, we had good neighbours, including an elderly couple who took a particular shine to my brother and me and gave us sweets and lemonade when we were in the garden.
At the front of the house, my father busied himself at weekends with a vegetable garden, which quickly became filled with potatoes, carrots, peas, onions, kohlrabi, tomatoes, strawberries and rhubarb. On Sunday afternoons we always ate rhubarb and custard for dessert.
I shared my room with my brother. It was small, so to conserve space we had a bunk bed. Though he was two years younger than me, my brother had the top bed. My parents were worried I might get restless in the night and fall out otherwise.
I had no strong feelings towards my brother and we lived parallel lives. He often played in the garden while I stayed in my room and we hardly ever played together. When we did, it was not mutual play – I never felt any sense of wanting to share my toys or experiences with him. Looking back, those feelings seem somewhat alien to me now. I understand the idea of mutuality, of having shared experiences. Though I sometimes still find it difficult to open up and give of myself the feelings necessary to do so are definitely inside me. Perhaps they always were, but it took time for me to find and understand them.
I became an increasingly quiet child and spent most of my time in my room, sitting on my own in a particular spot on the floor, absorbed in the silence. Sometimes I’d press my fingers into my ears to get closer to the silence, which was never static in my mind, but a silky, trickling motion around my head like condensation.
When I closed my eyes I pictured it as soft and silvery. I didn’t have to think about it; it would just happen. If there was a sudden noise, such as a knock on the door, it was painful to me, like a shattering of that experience.
The living room downstairs was always filled with books. My parents were both dedicated readers and I can still remember sitting on the floor and watching them with their books, newspapers and magazines in hand. Sometimes, when I was good, I was allowed to sit on their laps while they read. I liked the sound of the pages as they were flicked over. Books became very special to me, because whenever my parents were reading, the room would fill with silence. It made me feel calm and content inside.
I started hoarding my parents’ books, carrying them one at a time in my arms up to my room. The stairs were difficult for me and I would negotiate them one step at a time. If the book I was carrying was heavy or large it could take me a full minute to climb a dozen steps. Some of the books were pretty old and smelled of must.
Inside my room I sorted the books into piles on the floor until they surrounded me on all sides. It was hard for my parents to come into the room for fear of knocking one of the piles on top of me. If they tried to remove any of the books I would burst into tears and have a tantrum. The pages of my books all had numbers on them and I felt happy encircled by them, as though wrapped in a numerical comfort blanket. Long before I could read the sentences on the pages, I could count the numbers. And when I counted, the numbers would appear as motions or coloured shapes in my mind.
On one expedition up the stairs with my arms clasping a particularly heavy book I slipped and fell. The falling motion seemed to fill my mind with rapid flashes of bright and sketchy colour, like scattered sunlight. I just sat at the bottom of the stairs, dazzled and sore. I didn’t think to call for help but waited for my father to come and see what the noise was. I rarely if ever spoke unless spoken to. After that, my parents started hiding their larger and heavier books from me, afraid that I would fall again and hurt myself badly.
There was a park close enough to the house to visit on foot so we went there most weekends. My parents tore up slices of bread for me to throw to the ducks. They usually took us early in the mornings when there were few people about. They knew that I was frightened by the presence of lots of people. While my brother ran around, I sat on my own on the ground, pulling up the blades of grass and picking the petals off the daisies.
My favourite experience at the park was going on the swings. My father would pick me up and sit me down on the swing and push me gently. When he got tired and stopped pushing me I would shout ‘more … more’ until he started pushing again. There was also a roundabout, and I sat in the middle of it as my parents stood either side and slowly moved it round. As the roundabout spun I closed my eyes and smiled. It made me feel good.
The road near the park was sometimes noisy as we walked back home. If a passing car made a sudden, loud noise – like a blaring horn – I would stop and throw my hands up and press them hard against my ears. Often the noise was more sudden than it was loud. It was because it was unexpected that it seemed to affect me so much. It is for this reason that I hated balloons and would cower if I saw someone holding one. I was frightened that it would burst and make a loud and violent noise.
After our move to Blithbury Road, until the age of five I continued my nursery at a local school called Dorothy Barley, named after a sixteenth-century abbess who lived in the area during the reign of Henry VIII. We were often given paper and coloured pencils by the nursery assistants and encouraged to draw and colour in. I always enjoyed this, though I found it difficult to hold the pencil between my fingers and would grip it with my palm. I liked drawing circles of lots of different sizes. The circle was my favourite shape and I drew it over and over again.
The nursery had a box in the corner full of lots of things to play with. My favourites were the coloured beads I found; I would hold them in my hands and shake them to watch them vibrate around my palms. If we were given cardboard rolls to play with (to make binoculars or a telescope, for example) I would drop the beads through the roll, fascinated that the beads dropped through one end and fell out of the other. If I found a tub or jar I would drop the beads inside and then empty it and begin again.
On one wall was a shelf with a selection of books. My favourite was The Very Hungry Caterpillar. I loved the holes in the pages and the bright, round illustrations. There was a reading corner nearby where the children sat on a large mat around the assistant and listened to a book being read to them. On one such occasion, I was sitting near the back with my legs crossed and my head down, absorbed in my own world. I didn’t hear a word of what was being said. Instead, without realising it, I began to hum. As I looked up, the assistant had stopped reading and everyone was staring at me. I stopped humming and put my head back down and the reading resumed.
I don’t remember feeling lonely at the nursery, probably because I was so absorbed in my books and beads and circles. Slowly I think
the feeling was creeping over me that I was different from the other children, but for some reason it didn’t bother me. I didn’t yet feel any desire for friends; I was happy enough playing by myself.
When the time came to play social games, such as musical chairs, I refused to join in. I was frightened by the thought of the other children touching me as they shoved one another for one of the remaining seats. No amount of gentle persuasion by the supervisors would work. Instead I was allowed to stand by one of the walls and watch the other children play. So long as I was left to myself I was happy.
The moment I came home from the nursery I would always go upstairs to my room. Whenever I was feeling tired or upset I would crawl into the darkness under the bed and lie there. My parents learnt to tap quietly at the door before coming in to see how I was. My mother always made me tell her about my day at the nursery. She wanted to encourage me to speak, because I was so quiet so much of the time.
My room was my sanctuary, my personal space where I felt most comfortable and happy. I spent so much of my day there that my parents took to coming up and sitting with me in order to spend time with me. They never seemed impatient with me.
As I sit here now and write about those early years, I’m amazed to think how much my parents did for me even as they must have got so little back at the time. Hearing their recollections of my earliest years has been a magical experience for me; to see for myself in hindsight the extent of their role in making me the person I am today. In spite of all my many problems, all the tears and tantrums and other difficulties, they loved me unconditionally and devoted themselves to helping me – little by little, day by day. They are my heroes.
3
Struck by Lightning: Epilepsy
I was sitting on the living room floor when it happened. I was four years old and sat with my brother Lee while my father was making dinner in the kitchen. It was not exceptional at that age for me to feel moments of complete disconnection, periods of total self-absorption – studying closely the lines on the palms of my hands or watching my shifting shadow as I leaned backwards and forwards in slow and rhythmic movements. But this was something else, an experience unlike any other, as though the room around me was pulling away from me on all sides and the light inside it leaking out and the flow of time itself coagulated and stretched out into a single lingering moment. I did not and could not have known it then, but I was having a massive epileptic seizure.
Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant Page 3
