Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant (22 page)

Not long after the move to Herne Bay, Neil and I decided to work together on an idea that I had had to create an educational website with online courses for language learners. Neil, with his job in computers, would be responsible for all the technical details, while I would write the site’s content and the courses. After some thought, I chose the name ‘Optimnem’ for the site, from ‘Mnemosyne’, the inventor of words and language in Greek mythology. The students receive each lesson by email and these come with audio clips recorded by native speakers, lots of written examples of the language, and exercises to help practise and revise at each step of the course. In creating each of the courses, I was able to draw on the experience that I had had as a teacher in Lithuania and as a tutor to help me focus on the parts of language learning that people often find most difficult. I also wanted to write courses that reflected my own personal experiences as a learner on the autistic spectrum. For these reasons, each course is broken down into easily digested chunks of information. The lessons avoid jargon such as ‘nominative’ and ‘genitive’ or ‘verb conjugation’ and instead try to explain how words change, depending for example on their position in a sentence, in simple and clear language. Using lots of written examples also means students can see the language at work in many different situations and it is easier to remember new vocabulary when it is presented visually and in context. The website was launched in September 2002 and proved a success, with thousands of students of all ages and from all over the world using it, and millions of ‘hits’ (page views). Optimnem is now in its fourth year and is an approved member of the UK’s National Grid for Learning, a government-funded portal that provides ‘a gateway to educationally valuable content on the Internet’.

The success of the website meant that I was working and earning money, something that I felt proud and excited about. There was also the benefit of working from home, which is definitely an advantage for me because of the anxiety I can feel when I am in an environment that I cannot control and do not feel comfortable in. I’m happy to be self-employed, though of course it is not an easy choice and it can be much harder to achieve financial independence this way.

Neil too now works from home, only needing to commute to and from his office in Ramsgate once a week. On an average weekday, I sit with my computer at the kitchen table at the back of the house with a beautiful view over the garden, while Neil works in the office (a converted bedroom) upstairs. If I need advice over something relating to the website, it is only a short walk up the stairs to ask him. Seeing so much of each other is a good thing for us, though I know it would not work for every relationship. For lunch, we sit together and talk over our sandwiches or soup, which I prepare. Neil is happy to occasionally share in my obsessive daily routines: drinking tea with me at the same times each day for example. After work, we make supper in the kitchen together, which gives us both a chance to relax and think about other things.

I have always loved animals, from my childhood fascination with ladybirds to avidly watching wildlife programmes on television. I think one reason is that animals are often more patient and accepting than many people. After I first moved in with Neil, I spent a lot of time with his cat, Jay. She was then a little less than two years old and very aloof, preferring to spend all her time out wandering around the neighbourhood gardens and growling whenever Neil tried to pat or hold her. At that time, Neil was working at his office and was away from the house for ten or more hours each day. Before my arrival, Jay had therefore spent her first and formative years alone for much of the time. It must have been a surprise, then – and a shock – for her to suddenly find that she now had company throughout the day. At first I kept my distance, knowing that she was unused to having someone around regularly. Instead, I waited for her natural curiosity to start to work and indeed it wasn’t long before she would walk up to me as I was sitting in the living room, and sniff at my feet, and hands if I lowered them for her to rub with her nose. Over time, Jay started to spend more and more time indoors. Whenever she came in, I would kneel down until my face was level with hers and slowly extend my hand around her head and stroke her in the same way that I had watched her stroke the fur on her back with her tongue. Then she would purr and open and close her eyes sleepily and I knew that I had won her affection.

Jay was a smart and sensitive cat. Sometimes I lay down on the floor for her to sit on my chest or tummy and snooze. Just before she sat down, she would pummel me gently with her paws. This is a common behaviour in cats, known as ‘treading’ or ‘padding’, and is thought to indicate contentment. The reasons for it are not clear; though the action mimics the way a kitten uses its paws to stimulate the flow of milk from its mother’s teat. Once Jay was sitting on me, I would close my eyes and slow down my breathing so that she thought I was dozing too. She would then feel reassured, because she knew that I would not be making any sudden movements, and relax and stay close to me. Often I wore one of my thick, coarse sweaters, even in warm weather, because I knew that Jay preferred their texture to smooth t-shirts or other clothes.

For all her affection, at various times Jay could still be remote and indifferent towards us and especially towards Neil, something that I knew upset him very much. I suggested to him that what she needed was a companion, another cat to interact with. I hoped that she would learn social skills in the process and become more approachable. We read the adverts in the local newspaper and saw one from someone with a cat that had recently borne a litter of kittens. We telephoned and made an appointment to go and view them. When we arrived at the house the next day we were told that most of them had been sold already and only a couple remained. I pointed to one, a tiny, shy black kitten, and was told that nobody had shown any interest in her because she was black all over. We agreed straight away to take her home with us and gave her the name Moomin. At first, unsurprisingly, Jay was not sure of her new sister and hissed and growled at her at every opportunity. Over time, however, she stopped and began to at least tolerate her presence. What became even more heartening, though, was the gradual but definite change in her overall behaviour: she became much more affectionate, willing to be picked up and held, and much happier, with long, loud periods of purring and bouts of playfulness with Moomin and with us. She would make a wonderful ‘brrrp’ sound whenever she saw us, to which I would respond by crouching down and rubbing my face against the fur on hers.

In the summer of 2004, we celebrated Jay’s fifth birthday, giving her extra food and toys to play with. However, her appetite seemed smaller and her energy lower than usual, which we thought might be due to the very hot weather. She often sat or slept under something: a bed, or a table, or the towel rack in the bathroom. I understood this behaviour very well, because as a child I too had climbed under my bed or a table to help me feel calm and secure. But then Jay was doing it more and more, becoming withdrawn from us in the process. Then came the sickness. She would vomit repeatedly but only liquid would come out. At first it was a nuisance, but then as it went on we began to worry. By now she was also losing weight and walking more slowly around the house. Neil took her to the vet and she was kept in for tests and observation. We soon heard that she had a kidney infection, rare in a cat so young, and that she would need several days of treatment on site. We phoned every day for an update on her condition and were told that she was stable. Then, a week after we took her in, we received a call telling us that Jay was not responding to the treatment and that it might be a good idea for us both to come in and see her.

We drove over immediately. A woman at reception walked us through a narrow corridor to a quiet, grey room at the back of the building, then said she would leave us alone for a few minutes. Even at that moment, I do not think the seriousness of the situation had really occurred to me. As Neil and I stood there in the middle of the room in mutual silence, I saw her. Jay was lying still on a white mattress surrounded by plastic tubes, growling weakly and repeatedly. Hesitantly, I reached out my hand and stroked her; her fur felt greasy and underneath she was thin and bony. Suddenly, like a wave hitting a rock from out of sight, I felt an emotion inside too big for me to contain and my face was wet and I knew that I was crying. Neil walked over and stared at her, then he too began to weep softly. A nurse came in and told us that they were doing everything they could, but that Jay’s condition was rare and very serious. We drove home and cried again on each other’s shoulders. The next day Neil received a call telling him that Jay had passed away. There were many more tears in the days that followed, as well as the abiding shock over losing a companion so deeply loved so suddenly and unexpectedly. She was cremated and we buried her ashes in the garden with a stone monument dedicated to her memory. It reads: ‘Jay, 1999–2004. Always in our hearts.’

No relationship is without its difficulties and this is certainly true when one or both of the persons involved has an autistic spectrum disorder. Even so, I believe what is truly essential to the success of any relationship is not so much compatibility, but love. When you love someone, virtually anything is possible.

There are seemingly trivial situations at home, such as dropping a spoon while doing the washing up, when I will have a meltdown and need time to stop and calm down before I can continue. Even a small, unexpected loss of control can feel overwhelming to me, particularly when it interferes with the rhythm of one of my routines. Neil has learned not to intervene but to let it pass, which does not normally take very long, and his patience helps a lot. With his support and understanding, such meltdowns have become less frequent over time.

Other situations can cause me high levels of anxiety, if for example a friend or neighbour spontaneously decides to come over to see us. Although I am happy to see him or her, I can feel myself go tense and become flustered, because it means I have to change the schedule I had already mapped out in my head for that day, and having to alter my plans is unsettling for me. Again Neil reassures me and helps me to stay calm.

Social situations can be a big problem for me. If we eat in a restaurant, I prefer to sit at a table in the corner or against a wall so other diners do not surround me. During one visit to a local restaurant, we were talking and eating happily when suddenly I smelled cigarette smoke. I could not see where it was coming from, had not anticipated it, and became very anxious. Neil notices when this happens because he has seen it many times before: I drop my eye contact and become monosyllabic. There was nothing to do but to eat up and leave as soon as possible. I am fortunate that we both enjoy spending a lot of time together at home and do not need to go out very much. When we do, it is usually to a cinema or a quiet restaurant.

Conversations can be problematic between us because of the auditory processing difficulties I sometimes experience. Neil will say something to me, to which I will nod or say ‘yes’ or ‘okay’, but then later I will realise that I have not understood what he said. It can be very frustrating for him to spend time explaining or recounting something important to me, only to find afterwards that I have not taken it in. The problem is that I do not realise that I am not hearing what he is saying; I very often hear fragments of each sentence, which my brain automatically pulls together to try to make sense of. By missing key words, however, I quite often do not get the real content of what is being said. Nodding and saying things like ‘okay’ when someone is speaking to me has evolved over time as my way of allowing communication between me and someone else to flow normally, without the other person needing to stop and repeat continuously. Though the tactic works for me most of the time, I now realise that it is not appropriate within a relationship. Instead, Neil and I have learned to persevere when we talk together: I give my fullest attention to him while he is speaking to me and signal if there is a word or words that need to be repeated. That way, we can both be sure that each of us understands the other fully.

As a teenager, I hated having to shave. The blades would rub against my face and cut me as I struggled to hold the razor securely with one hand while holding my head still with the other. It would often take longer than an hour at a time to shave, after which my skin would feel hot and itchy. It was so uncomfortable that I shaved as infrequently as possible, sometimes going for months until my beard – as the stubble became – pulled on the skin and irritated it so much that I had to shave it off. In the end, I shaved around twice a month, often annoying my brothers and sisters because I would take so long in the bathroom. Nowadays, Neil shaves me every week with an electric razor that trims the stubble and is quick and not painful to me.

Being extra sensitive to certain physical sensations affects the ways in which Neil and I express affection and intimacy towards each other. For example, I find light touching – such as a finger stroking my arm – uncomfortable and I had to explain this to Neil because of the way I would squirm when all he was trying to do was demonstrate his love for me. Fortunately, it is no problem for me to hold hands or to have Neil put his arm lightly around me.

I have learned a huge amount from Neil in the years that we have been together and from the experience of loving him and sharing our lives with one another. Love has definitely changed me by making me more open to others and more aware of the world around me. It has also made me more confident in myself and in my ability to grow and make new progress day by day. Neil is a part of my world, part of what makes me ‘me’, and I could not for one moment imagine my life without him.

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