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.
9
The Gift of Tongues
Languages had always been a source of fascination to me and having now settled into my new home and established the website I could really begin to spend more time working on them. The first language I studied after Lithuanian was Spanish. My interest in it was piqued by a conversation that I had with Neil’s mother, in which she talked of holidays the family had taken in various parts of Spain and mentioned that she had been learning the language over many years. I asked if she had any books that I could borrow and she found an old ‘Teach Yourself’ title for me to take away and read. The following week we visited Neil’s parents again and I returned the book to his mother. When I began conversing with her comfortably in Spanish she couldn’t believe it.
I used a similar method to learn Romanian, which I began after my friend Ian asked me for advice on learning the language to help him communicate with his wife, Ana. I supplemented my reading with an online Romanian language edition of the Saint-Exupéry classic, Micul Print (The Little Prince).
My latest language-learning project is Welsh, a beautiful and distinctive language that I first heard and saw during a holiday with Neil to the small North Wales town of Blaenau Ffestiniog, in the mountains of Snowdonia. Many of the people in this area speak Welsh as their first language (overall one in five people in Wales speak Welsh) and it was the only language that I heard spoken in many of the places that we visited.
Welsh has a number of features that are unique among all the languages I have studied. Words beginning with certain consonants sometimes change their first letters, depending on how they are used in a sentence. For example, the word ceg (‘mouth’) changes to dy geg (‘your mouth’), fy ngheg (‘my mouth’) and ei cheg (‘her mouth’). The word order in Welsh is also unusual, with the verb coming first in a sentence: Aeth Neil i Aberystwyth (‘Neil went to Aberystwyth’, literally ‘went Neil to Aberystwyth’). I’ve found the hardest part of learning Welsh is the pronunciation of certain sounds, such as ‘ll’, which is rather like putting your tongue in position to say the letter ‘l’ and then trying to say the letter ‘s’.
An invaluable resource for my Welsh study has been the Welsh language television channel S4C which I’m able to watch through my satellite receiver. Programmes are varied and interesting, from the soap opera Pobol y Cwm (People of the Valley) to the newyddion (news). It has proven an excellent way for me to improve my comprehension and pronunciation skills.
The relationship I have with a language is quite an aesthetic one, with certain words and combinations of words being particularly beautiful and stimulating to me. Sometimes I will read a sentence in a book over and over again, because of the way the words make me feel inside. Nouns are my favourite type of words, because they are the easiest for me to visualise.
When I’m learning a language there are a number of things that I consider essential materials to begin with. The first is a good size dictionary. I also need a variety of texts in the language, such as children’s books, stories and newspaper articles, because I prefer to learn words within whole sentences to help give me a feeling for how the language works. I have an excellent visual memory and when I read a word or phrase or sentence written down, I close my eyes, see it in my head and can remember it perfectly. My memory is much poorer if I can only hear a word or phrase and not see it. Conversing with native speakers helps to improve accent, pronunciation and comprehension. I do not mind making mistakes but try very hard not to repeat them once they have been pointed out to me.
Each language can act as a stepping-stone to another. The more languages a person knows, the easier it becomes to learn a new one. This is because languages are somewhat like people: they belong to ‘families’ of related languages, which share certain similarities. Languages also influence and borrow from each other. Even before I began to study Romanian, I could understand perfectly the sentence: Unde este un creion galben? (‘Where is a yellow pencil?’), because of the similarities to Spanish: dónde está (‘where is?’), French: un crayon (‘a pencil’) and German: gelb (‘yellow’).
There are also relationships between words inside each language which are unique to it. I am able to see these connections easily. For example, Icelandic has borð (‘table’) and borða (‘to eat’), French has jour (‘day’) and journal (‘newspaper’) and German ha
s Hand (‘hand’) and Handel (a ‘trade’ or ‘craft’).
Learning compound words can help to enrich vocabulary and provide useful examples of a language’s grammar. The German word for vocabulary, as an example, is Wortschatz, combining the words Wort (‘word’) and Schatz (‘treasure’). In Finnish, compounds can be formed that are equivalent to many separate words in other languages. For example, in the sentence: Hän oli talossanikin (‘He was in my house too’) the last word talossanikin is composed of four separate parts: talo (‘house’) + -ssa (‘in’) + -ni (‘my’) and -kin (‘too’).
I find some aspects of language much more difficult than others. Abstract words are much harder for me to understand and I have a picture in my head for each that helps me to make sense of the meaning. For example, the word ‘complexity’ makes me think of a braid or plait of hair – the many different strands woven together into a complete whole. When I read or hear that something is complex I imagine it as having lots of different parts that need tying together to arrive at an answer. Similarly, the word ‘triumph’ creates a picture in my mind of a large, golden trophy, such as the ones won in big sporting events. If I hear about a politician’s ‘election triumph’ I imagine the politician holding a trophy over his head, like the winning team captain at an FA cup final. For the word ‘fragile’ I think of glass; I picture a ‘fragile peace’ as a glass dove. The image I see helps me to understand that the peace might be shattered at any moment.
Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant Page 15