Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant (5 page)

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.

Epilepsy is one of the most common conditions affecting the brain – around 300,000 people in the UK have some form of it. Seizures are the result of brief electrical disturbances in the brain. Little is presently known about why they happen or how they start and stop. No single apparent cause has been found, but doctors think that epilepsy may be due to a problem with the links between nerve cells or the balance of chemicals in the brain.

In the days before the seizure my father had noticed my eyes flicker and arms tense as I lay on the settee in the living room watching television. He was concerned and called the doctor to come and examine me. The weather was hot and humid and the doctor suggested that I might only have had a ‘turn’. He recommended that my father remain vigilant and immediately report any further such episodes.

I was extremely fortunate that my brother was with me at the time of the second seizure. I had gone into convulsions and lost consciousness. My father, hearing my brother crying, rushed in to find the cause of the commotion. Acting on instinct, he carefully scooped me up into his arms and ran out of the house to a row of taxicabs parked close by. Climbing inside the first, he begged the driver to take him to the nearest hospital – St George’s – as quickly as possible. As the taxi raced through the streets, there was nothing my father could do but hold me close to him and pray.

Sweating profusely, my father ran from the taxi straight to the children’s ward. I had not come round and the seizure activity continued, a potentially life-threatening condition known as ‘status epilepticus’. A nurse at reception collected me from my father’s arms and called for doctors who first gave me a valium injection to help stabilise my condition. I was not breathing and had started to turn blue, so the doctors performed cardiopulmonary resuscitation (CPR) to revive me. It was about an hour after the seizure had begun that my condition started finally to return to normal. Exhausted by the ordeal, my father burst into tears of relief at the news. He had by his prompt action helped save my life.

I was diagnosed with temporal lobe epilepsy. The temporal lobes are located on the side of the head above the ears. They are deeply involved with sensory input, memory, hearing and perception, and seizures occurring in this area of the brain can impair memory function and affect personality.

The prevalence of epilepsy among those on the autistic spectrum is much higher than in the normal population. About a third of children with an autistic spectrum disorder develop temporal lobe epilepsy by adolescence. For this reason it is thought that the two conditions may have a common source in the brain’s structure or in the genetics that underlie it.

As part of the diagnosis, I was given a test called an electroencephalogram (EEG). During an EEG, electrodes are placed around the scalp to measure the brain’s electrical activity and to check for any abnormalities in the brain waves. I recall the technician standing over me and sticking the electrodes – small and circular metal caps – on to different parts of my head with paste to keep them in place. I winced and grimaced as each one was applied because I didn’t like the sensation of someone touching my head.

I also underwent a magnetic resonance imaging (MRI) brain scan. MRI uses a powerful large magnet, microwave radiation and computers to generate detailed images of the inside of the body. I was sedated ahead of the scan, probably because the technician was concerned that I would not be able to cope with the noise of the machine and the possible feeling of claustrophobia while inside the scanner. I remember being laid down on a soft, bright white couch which was then pushed into a narrow tunnel for the scan, which lasted around thirty minutes. I must have fallen asleep inside because I remember being woken by my father after the couch was pulled out from the tunnel. This is in spite of the fact that the scanner would have been very noisy while the pictures were being taken.

I stayed in hospital for several days while the different tests were being carried out. My parents took it in turns to stay with me day and night. They were frightened that I might wake up and panic if I did not see a familiar face. The ward where I stayed had a shiny floor with lots of tiny scratches on it and the texture of the sheets on my bed felt different to those at home – pricklier and less soft. My parents gave me orange juice to drink and colouring-in books and crayons to occupy myself with, but a lot of the time I just spent sleeping because I felt so tired.

The doctors told my parents that my prognosis was good – about half of all children diagnosed with temporal lobe epilepsy outgrow the condition. I was prescribed anti-seizure medication and allowed home.

Being diagnosed with epilepsy affected both my parents very deeply, my father in particular. His father – my grandfather – had suffered from epileptic seizures over many years in adulthood and died prematurely several years before I was born.

His name was William John Edward and he was born in East London in the early 1900s. He had worked as a shoe repairer and fought during the Second World War, evacuated from Dunkirk before being stationed at a military base in northern Scotland, manning an anti-aircraft gun. He was married and had four children; my father was the youngest. The seizures began after the war and were particularly violent – my grandmother quickly became familiar with the sound of crashing plates and cups being knocked from the kitchen table on to the floor.

At that time the resources available for helping those living with epilepsy were limited. Doctors suggested that my grandfather’s illness had been brought on by shell shock suffered during the war. They advised my grandmother to divorce her husband and to move on. After all, she had a young family and her whole life ahead of her. It must have been the most difficult decision she ever had to make, but she took the doctors’ advice and subsequently remarried. My grandfather was moved to a long-stay institution for ex-soldiers with mental problems.

The break-up of my grandparents’ relationship had disastrous consequences for the family. My grandmother started a new family but her second husband struggled to find work and gambled what little he earned so that, without a stable income, they soon found themselves with growing rent arrears. One day the family returned home to find their furniture piled up on the lawn and the doors padlocked. They had been evicted by the council for non-payment of rent – they were homeless.

A friend of the family initially took the children in, including my father who had the role of eldest brother to his stepsiblings, before they were moved with my grandmother to a hostel for the homeless. My father was given a Lego set as a going-away present by the family friend who had helped to look after him. The hostel was made up of small huts with shared toilets, bathroom and kitchen for the residents. The corridors connecting the rooms were narrow and the floor was covered in red concrete. My father could hear the members of staff walking along the corridor from the noise of their footsteps. He nicknamed one ‘Jackboots’.