Autism, including Asperger’s syndrome, is defined by the presence of impairments affecting social interaction, communication and imagination (problems with abstract or flexible thought and empathy, for example). Diagnosis is not easy and cannot be made by a blood test or brain scan; doctors have to observe behaviour and study the individual’s developmental history from infancy.
People with Asperger’s often have good language skills and are able to lead relatively normal lives. Many have above-average IQs and excel in areas that involve logical or visual thinking. Like other forms of autism, Asperger’s is a condition affecting many more men than women (around 80% of autistics and 90% of those diagnosed with Asperger’s are men). Single-mindedness is a defining characteristic, as is a strong drive to analyse detail and identify rules and patterns in systems. Specialised skills involving memory, numbers and mathematics are common. It is not known for certain what causes someone to have Asperger’s, though it is something you are born with.
For as long as I can remember, I have experienced numbers in the visual, synaesthetic way that I do. Numbers are my first language, one I often think and feel in. Emotions can be hard for me to understand or know how to react to, so I often use numbers to help me. If a friend says they feel sad or depressed, I picture myself sitting in the dark hollowness of number six to help me experience the same sort of feeling and understand it. If I read in an article that a person felt intimidated by something, I imagine myself standing next to the number nine. Whenever someone describes visiting a beautiful place, I recall my numerical landscapes and how happy they make me feel inside. By doing this, numbers actually help me get closer to understanding other people.
Sometimes people I meet for the first time remind me of a particular number and this helps me to be comfortable around them. They might be very tall and remind me of the number nine, or round and remind me of the number three. If I feel unhappy or anxious or in a situation I have no previous experience of (when I’m much more likely to feel stressed and uncomfortable), I count to myself. When I count, the numbers form pictures and patterns in my mind that are consistent and reassuring to me. Then I can relax and interact with whatever situation I’m in.
Thinking of calendars always makes me feel good, all those numbers and patterns in one place. Different days of the week elicit different colours and emotions in my head: Tuesdays are a warm colour while Thursdays are fuzzy. Calendrical calculation – the ability to tell what day of the week a particular date fell or will fall on – is common to many savants. I think this is probably due to the fact that the numbers in calendars are predictable and form patterns between the different days and months. For example, the thirteenth day in a month is always two days before whatever day the first falls on, while several of the months mimic the behaviour of others, like January and October, September and December and February and March (the first day of January is the same as the first day of October). So if the first of January is a fuzzy texture in my mind (Thursday) for a given year, the thirteenth of October will be a warm colour (Tuesday).
In his book The Man Who Mistook His Wife for a Hat, writer and neurologist Oliver Sacks mentions the case of severely autistic twins John and Michael as an example of how far some savants are able to take calendrical calculations. Though unable to care for themselves (they had been in various institutions since the age of seven), the twins were capable of calculating the day of the week for any date over a 40,000-year span.
Sacks also describes John and Michael playing a game for hours at a time that involved swapping prime numbers with each other. Like the twins, I have always been fascinated by prime numbers. I see each prime as a smooth textured shape, distinct from composite numbers (non-primes) that are grittier and less distinctive. Whenever I identify a number as prime, I get a rush of feeling in my head (in the front centre) which is hard to put into words. It’s a special feeling, like the sudden sensation of pins and needles.
Sometimes I close my eyes and imagine the first thirty, fifty, hundred numbers as I experience them spatially, synaesthetically. Then I can see in my mind’s eye just how beautiful and special the primes are by the way they stand out so sharply from the other number shapes. It’s exactly for this reason that I look and look and look at them; each one is so different from the one before and the one after. Their loneliness among the other numbers makes them so conspicuous and interesting to me.
There are moments, as I’m falling into sleep at night, that my mind fills suddenly with bright light and all I can see are numbers – hundreds, thousands of them – swimming rapidly over my eyes. The experience is beautiful and soothing to me. Some nights, when I’m having difficulty falling asleep, I imagine myself walking around my numerical landscapes. Then I feel safe and happy. I never feel lost, because the prime number shapes act as signposts.
Mathematicians, too, spend a lot of time thinking about prime numbers, in part because there is no quick or simple method for testing a number to see whether or not it is prime. The best known is called ‘The Sieve of Eratosthenes’ after an ancient Greek scholar, Eratosthenes of Cyrene. The sieve method works in this way: Write out the numbers you want to test, for example 1–100. Starting with 2 (1 is neither prime nor composite), cross out every second number: 4, 6, 8 … up to 100. Then move to 3 and cross out every third number: 6, 9, 12 … then move to 5 and cross out every fifth number: 10, 15, 20 … and so on, until you are left with only a few numbers that do not ever get crossed out: 2, 3, 5, 7, 11, 13, 17, 19, 23, 29, 31 … These are the prime numbers; the building blocks of my numerical world.
My synaesthesia also affects how I perceive words and language. The word ‘ladder’, for example, is blue and shiny, while ‘hoop’ is a soft, white word. The same thing happens when I read words in other languages: jardin, the French word for garden, is a blurred yellow while hnugginn – Icelandic for ‘sad’ – is white with lots of blue specks. Synaesthesia researchers have reported that coloured words tend to obtain their colours from the initial letter of the word, and this is generally true for me: ‘yoghurt’ is a yellow word, ‘video’ is purple (perhaps linked with ‘violet’) and ‘gate’ is green. I can even make the colour of a word change by mentally adding initial letters to turn the word into another: ‘at’ is a red word, but add the letter H to get ‘hat’ and it becomes a white word. If I then add a letter T to make ‘that’, the word’s colour is now orange. Not all words fit the initial letter pattern: words beginning with the letter A, for example, are always red and those beginning with W are always dark blue.
Some words are perfect fits for the things they describe. A raspberry is both a red word and a red fruit, while ‘grass’ and ‘glass’ are both green words that describe green things. Words beginning with the letter T are always orange like a tulip or a tiger or a tree in autumn, when the leaves turn to orange.
Conversely, some words do not seem to me to fit the things they describe: ‘geese’ is a green word, but describes white birds (‘heese’ would seem a better choice to me), the word ‘white’ is blue while ‘orange’ is clear and shiny like ice. ‘Four’ is a blue word but a pointy number, at least to me. The colour of wine (a blue word) is better described by the French word vin, which is purple.
Seeing words in different colours and textures aids my memory for facts and names. For example, I remember that the winning cyclist of each stage of the Tour de France wins a yellow jersey (not green or red or blue), because the word ‘jersey’ is yellow to me. Similarly, I can remember that Finland’s national flag has a blue cross (on a white background) because the word ‘Finland’ is blue (as are all words beginning with the letter F). When I meet someone for the first time I often remember their name by the colour of the word: Richards are red, Johns are yellow and Henrys are white.
It also helps me to learn other languages quickly and easily. I currently know ten languages: English (my native language), Finnish, French, German, Lithuanian, Esperanto, Spanish, Romanian, Icelandic and Welsh. Associating the diffe
rent colours and emotions I experience for each word with its meaning helps bring the words to life. For example, the Finnish word tuli is orange to me and means ‘fire’. When I read or think about the word I immediately see the colour in my head, which evokes the meaning. Another example is the Welsh word gweilgi, which is a green and dark blue colour and means ‘sea’. I think it is an extremely good word for describing the sea’s colours. Then there is the Icelandic word rökkur, which means ‘twilight’ or ‘dusk’. It is a crimson word and when I see it, it makes me think of a blood-red sunset.
I remember as a young child, during one of my frequent trips to the local library, spending hours looking at book after book trying in vain to find one that had my name on it. Because there were so many books in the library, with so many different names on them, I’d assumed that one of them – somewhere – had to be mine. I didn’t understand at the time that a person’s name appears on a book because he or she wrote it. Now that I’m twenty-six I know better. If I were ever going to find my book one day, I was going to have to write it first.
Writing about my life has given me the opportunity to get some perspective on just how far I’ve come, and to trace the arc of my journey up to the present. If someone had told my parents ten years ago that I would be living completely independently, with a loving relationship and a career, I don’t think they would have believed it and I’m not sure I would have done either. This book will tell you how I got there.
My younger brother Steven has recently been diagnosed with the same form of high-functioning autism that I have. At nineteen, he is going through a lot of the challenges that I too faced while growing up, from problems with anxiety and loneliness to uncertainty about the future. When I was a child, doctors did not know about Asperger’s syndrome (it was not recognised as a unique disorder until 1994) and so for many years I grew up with no understanding of why I felt so different from my peers and apart from the world around me. By writing about my own experiences of growing up on the autistic spectrum, it is my hope that I can help other young people living with high-functioning autism, like my brother Steven, to feel less isolated and to have confidence in the knowledge that it is ultimately possible to lead a happy and productive life. I’m living proof of that.
2
Early Years
It was a bitterly cold January morning in East London. My mother, Jennifer by then heavily pregnant with me, was sitting and gazing out silently from the only large window in the flat over the narrow, frozen street below. My father, Kevin a habitual early riser, was surprised to find her awake as he walked in with the day’s paper from the local shop. Worried that something might be wrong, he quietly approached and held her hand. She seemed tired, as she had for the past several weeks, and remained motionless, her gaze fixed and silent. Then slowly she turned to him, her face etched with emotion as her hands hovered gently over her stomach, and said: ‘Whatever happens, we’ll love him, just love him.’ My mother began to cry and my father squeezed her hand in his and nodded silently.
She had always considered herself an outsider as a child; her earliest memories had been of brothers too old to play with her (they had left home while she was still small) and of her own mother and father as quite often stiff and distant. Undoubtedly, she had been loved, but had rarely felt it growing up. Her childhood recollections continued to bristle with emotional ambiguity even thirty years later.
My father had been devoted to my mother from the time he had first met her, through mutual friends, and following a whirlwind romance they had made a home together. He had little to offer her, so he had thought, but his devotion.
As a child, he had brought up his younger brothers and sisters single-handedly while his mother, divorced from my grandfather, worked away from home for long periods at a time. At the age of ten, my father had taken it upon himself to look after them when the family moved into a hostel for the homeless. There had been little time for school or for the usual hopes and dreams of childhood. He would later recall the day he met my mother as the happiest of his life. Though very different people, they had made the other feel special and, for all the difficulties in their own upbringings, they had wanted nothing less than the same for me.
Days after their emotional conversation, my mother went into labour. Arriving home from work that evening, my father found her wracked with pain. She had waited for him, afraid to go to the hospital without him. He phoned for an ambulance and, his clothes still caked in oil and grease from his sheet metal work, he rushed with my mother to the hospital. The delivery was swift and I came into the world weighing just under six pounds.
It is said that the arrival of a baby changes everything, and my birth certainly changed my parents’ lives forever. I was their first child, so it is perhaps natural that they had invested so much of their hope for the future in me, even before I was born. My mother had spent the months leading up to my birth eagerly combing the advice columns of popular women’s magazines for baby care tips and together with my father had saved specially for a cot.
Yet my mother’s first days with me at the hospital were not as she had imagined them. I cried constantly for hours at a time. It didn’t seem to matter that she held me close to her, stroking my face gently with her fingers; I cried and cried and cried.
The flat where my parents lived was small and I was to sleep in a cot in the corner of their single bedroom. After my arrival from the hospital my parents found it impossible to lay me inside it; I would not sleep and I continued to cry incessantly. I was breastfed for the next eighteen months; not least because it was one of the very few methods my mother found to help quieten me.
Breastfeeding has long been known to be good for babies, helping to enhance cognitive development and sensory skills as well as the baby’s immune system. It is also thought to be beneficial to the emotional development of children on the autistic spectrum, providing a special opportunity for close physical and emotional contact between mother and child. Research indicates that autistic children who were breastfed are more responsive, socially adjusted and affectionate than their formula-fed peers.
Another means my parents found to relieve my crying was to give me the sensation of motion. My father regularly rocked me in his arms, sometimes for more than an hour at a time. It was not uncommon for him to have to eat his meals with one hand and hold and rock me with his other arm. He also took me in a pram for long walks in the street after work, often in the early hours of the morning. The moment the pram came to a stop I began to bawl again.
It soon didn’t matter whether it was day or night, as my parents’ lives quickly began to revolve around my crying. I must have driven them to distraction. In their despair they often put me in a blanket, my mother holding one end and my father the other, and swung me from side to side. The repetition seemed to soothe me.
That summer, I was christened. Even though my parents weren’t churchgoers themselves, I was their firstborn and they thought it was the right thing to do. All manner of relatives, friends and neighbours attended and the weather was warm and clear. But come the service I cried and cried, drowning out the words spoken during the ceremony. My parents were deeply embarrassed.
My mother’s parents visited us and wondered why it was that I was such a difficult baby. They suggested that my mother not pick me up when I began crying. ‘He’ll soon wear himself out,’ they said. But when my mother followed this advice my crying just became louder and louder.
My parents called the doctor out on many occasions, but each time he would say I was suffering from colic and that I would get better soon. Colic is often referred to as ‘unexplained crying’, where the baby cries longer and louder than average and is harder to console. About one in five babies cry enough to meet the definition of colic. Doctors and scientists have been trying for decades to find the cause behind these babies’ excessive crying. The most recent idea is that most forms of colic are developmental and neurological, arising from the brain, rather than – as many p
arents assume – the baby’s digestive system. For instance, colicky babies tend to be unusually sensitive to stimulation and are likely to be vulnerable to sensory overload.
The duration of my excessive crying – lasting well into my first year – is unusual, even for colicky babies. Recently, researchers studying the development of children with a history of prolonged crying in babyhood found that it may be a sign of future behavioural problems. Compared to children who cried normally as babies, at age five, children who had cried excessively were found to have poorer hand-eye coordination and to be prone to hyperactivity or present discipline problems.
Fortunately, my development was fine in other areas: I was walking and saying my first words not long after my first birthday. One of the criteria for a diagnosis of Asperger’s is the absence of any significant delay in language (as opposed to more severe forms of autism where language can be considerably delayed or even non-existent).
There followed a series of recurring ear infections, for which I was given antibiotics. Because of the pain caused by the infections, I remained a cranky, sickly and crying child well into my second year. Throughout all this time my parents, though frequently exhausted by me, continued to swing me in the blanket and rock me in their arms every day.
And then, amidst the constant crying and illness, my mother discovered she was pregnant. My parents applied to the local council for a larger home and we subsequently moved to a flat close by. Lee, my brother, was born on a Sunday in May and he was the complete opposite to me: happy, calm and quiet. It must have been an immense relief to my parents.
Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant Page 2
