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CHAPTER 1
How Did I Get Here?
K:Most people Iâve known for a long time will testify that Iâm a bit strange in a universally indescribable wayâŚjust weird.
Sarahâs mum: Youâre like a bull in a china shop.
Keith
Maybe when young we only have the ability to retain memories that are significant to us on an emotional basis. When older we are able to apply other emotions to the process of storing memories and remember other less significant stuff. My early memories mostly fall into two categories: good and bad. (Actually this is a fair insight into life in general: if thinking is polar; itâs easier to cope.)
There are few things I remember from my childhood. There are photo albums, but I donât know if what is triggered in my head when I see them are real or invented memories, by which to place myself in the photographs. I remember the boy next door and recall his name; there are black and white pictures of me in my broken spectacles with my arm around his shoulders. He moved house one day and was replaced by another boy. I never really liked him much: he wasnât the other boy, but he was there and I had to get on with him. He was strange, he had old parents and his mother died one day. He was a year older than me. There were seven other children of similar age around, so lots of people who I could be friends with. Iâm sure I was sociable. Days were nearly always spent kicking balls, exploring the woods, digging in soil, and sometimes eating it, roaming the hills and in each otherâs houses.
I remember being clumsy, which remains today. My parents were incredulous and took it quite personally that I would break plates and cups, as well as stubbing my toes. Surprisingly, there were no broken bones! Today Iâve moderated my behaviour so that almost every movement is controlled, every footfall is placed carefully; itâs all so contrived, but is the only way to prevent damage and injury. It feels confining and imprisoning, yet is the only tactic that works; as soon as I let go, or concentrate on anything other than the movement in hand, I get hurt or things get broken. It is an exhausting way to live, but necessary.
Primary school was a small, 200-pupil place, where just about everyone knew each other. Some of the people in this school were the children with whom I played. There were others too. Everyone was happy. It was an idyll. Comprehensive school was a 1200-pupil affair. Most of the people who had been in my primary school were dispersed within other classes. I didnât understand why. In my class of 30 I was the kid who stood out for all the wrong reasons: I was tall, thin, with red hair, glasses, bright, uncoordinated and uncomfortable in my own skin. The first attention this brought was the physical pecking order: the thugs in my class were mostly preoccupied with who could hit others the hardest, so being the tallest in the class I attracted a whole heap of unwanted attention. Iâd hoped that my complete lack of interest in walloping anyone would have put paid to that, but it only seemed to confuse them. The number of unprovoked thumpings I received I cannot count. The most bizarre was Tae Kwon Do Paul, who insisted that I hit him, or he would hit meâŚsurely if I hit him though he would retaliate, and I had no interest in being hit at all? He hit me. The second most bizarre was being dragged along to find Johnny M (who was a bit of an egghead) and being forced (under threat of violence) to ask each other hard questions to see who was the brightest. I have read that bullying is a very common occurrence in children (and adults) with AS.
These events just happened to me. It didnât feel natural that they should, but they did, and that didnât give me the right to question it: if someone does something then it must be for a reason. (I recall a conversation in later life which revealed quite a disparity between my approach to life and that of others. I found that most people reply with âWhy not?â when given the chance to do something, anything, whereas my approach is a definite âWhy do anything?â) I always felt that I didnât have a right to intervene; that others had the right to do entirely what they wanted to me. (Sarah: The advent of secondary education coinciding with puberty is often the time when AS becomes apparent and begins to cause problems as the individual is thrust into a bigger social world of less forgiving souls â up to 90 per cent of children with AS are reported to suffer bullying of some description (Attwood 2006).)
Throughout the years there I got to know a number of good people. I didnât socialise with any of them. I didnât socialise at all and had no desire to. I have no recollection of what I used to spend my time doing. Once or twice I was asked out or invited to local discos by females, but they were all kidding and involved in some extended form of insult like almost everyone else, right? Right? I was aware that others were mixing socially. I just thought: âThat is what other people do, not me.â It was just a simple fact; a truth, like âWhy is the sky blue?â It just is. Summer holidays were mostly spent cycling around the country on a tandem with my father, or spent by myself.
After studying for A-levels at school I went to university and lived in halls of residence for the entire three years because I couldnât tolerate the process of looking after myself, for instance cooking. This was done for me in halls â we ate communally in the dining room. I had no contact with any fellow students outside of eating together for those three years. I was not bullied or bothered, merely left alone. I knew that other people were going out socially together, and I would have liked to join them but had no idea how to make this happen, and my perceived difficulty in trying to make it happen was insurmountable. I still felt resigned to the fact that this happened to others and not me. I was attracted to women but never did anything about it. How could I? Why would anyone want to go out with me? I couldnât see that they would, so I didnât bother.
After university, I spent six months in Australia with someone who had gone to some of the same lectures as me. I donât regard us as having a friendship, as such. I wasnât fazed by doing this trip as I had organised long cycling trips staying at youth hostels in the UK and this didnât seem to be any different. On my return, I stayed with my parents until I began work in my current field of sonar. I had to move to the south coast from the north of England to do so. Once I had done so, I pretty much shut myself off from the world for about seven years. It wasnât deliberate, it just happened, like much in my life. I went to work and came home. I read no newspapers, watched no television and listened to no music, only Radio 4. I still cannot recognise songs that were released during this period. I went to a small independent cinema and watched films. Throughout this period I remember having thoughts of trying to train my mind not to become emotionally attached to anyone, and to live a self-fulfilled (isolated) existence. I wished I was sexless and led a monastic life. I had one friend from work who would invite me to go visit him occasionally. I never invited him to visit me because I didnât know that is what you were supposed to do. When he announced he was to leave the company and the area, I turned to isolation even more strongly. I was distraught and alone again â it was quite a wrench, Iâd obviously not taught myself so well.
I began my first relationship at the age of 31 with a woman from work. I imagine that she had shown her interest in me for some time, but I had not really noticed. This relationship lasted for around 18 months. She became very emotional and frustrated that I could not express how I felt about her and had great difficulty communicating with her. This resulted in heated discussions and rows. She felt I was too much of a nightmare to live with; even at the time I could see that she was probably right, but had no idea what I was supposed to be doing to improve the situation. I didnât understand any of this until recently, since I have learned about AS.
I had another couple of brief relationships lasting a couple of months after this, one was someone who lived next door, the other via internet dating, but I either felt that they were too much effort or I couldnât cope when the person expressed their love for me, so I ended them. I was (and to a degree still am) conflicted about relationships. I need my solitude, but know that sharing experiences and having someone to love is enjoyable.
In November 2003, I saw Sarah on an internet dating site. Encountering Sarah has proved to be life-changing. It was apparent from the very first communications with her that she was unlike anyone I had met. She was challenging, and I mean that in the very best possible way. She is not passive and accepting of what life throws at her. It is by her probing that I am here today, more self-aware than I have ever been and with a satisfactory explanation for my individualism. Maybe I would have gotten to this point alone, but maybe not. There might not have been enough time in my life to do it without her.
Sarah
I include myself for background and to show the obvious part of my own character and baggage that I bring to cloud the water in this partnership. Both Tony Attwood (2006) and Maxine Aston (2003) ascertain that certain types of women are attracted to the AS man, and I have no doubt that I fall firmly into one of these categories. These women tend to be super-empathisers, nurturers, strong and capable. With hindsight, I am staggered to see how many people with AS traits have been in my life. And all that time I thought I was making free choices! Recently, I discovered that Gary Numan has AS. I had a huge crush on him, aged 11. How could I possibly have known! Something about him â the aloofness, his soft attractiveness, the lack of overt sexuality and machismo obviously triggered something even back then.
A key moment of clarity regarding my own experience came around six months after meeting Keith. I knew he was unusual, and AS had been mentioned by a friend of mine, but the full implications were as yet unclear to either of us. I remember sitting in his flat musing on why I felt so at ease around him and who he was like from my past. I pondered on the popular psychological notion that people tend to be attracted to partners who are similar to one of their parents (usually a father for a woman). This is said to be due to the fact that there is a familiarity which we are drawn to and also that any unresolved issues with that parent (lack of affection, abuse, etc.) will be relived through the new partner, because (bizarrely) feeling bad in that way is comfortingly reassuring too. I considered the comparison between Keith and my dad. There was little. I was puzzled. My father was a noisy, physically strong, Liverpudlian, could talk to anyone, always laughing and seeing the best in life. Here in front of me was a pale, abnormally skinny, effeminate man who had led the most extremely isolated and non-social existence I had ever encountered. It didnât fit. Where was the pattern? Where was the hook? Why was I here? And then the penny dropped; this wasnât about my dad at all â it was my mum. It had never occurred to me that I may have chosen partners because of my mother, but from that moment onwards lots of things have all fallen into place for me.
I have subsequently examined this more closely along with the developing understanding of Keithâs AS and now believe very strongly that my mum had significant elements of AS. She died in 2001 so my thoughts are largely unproven. Mum was quite an eccentric character; but this was tolerated and respected in her generation. Having any kind of diagnosis would not have benefited her in any way. She had all the milestones of a successful and full life for a woman of her generation â marriage, kids, part-time job and a well-kept home. It has been said that those with AS who grew up pre-1950s have fared much better than those of a younger generation due to having fewer expectations and choices. AS was not recognised in the UK until the late 1970s. Life was more straightforward; choice of job was more limited. Perhaps people were more tolerant of others without requiring labels.
My mother was seen to be very shy, she had few friends throughout her life â her closest, and only real friend, a woman she had known for her entire 70 odd year life, she was never on first name terms with, still referring to her as âMrsâ. She only wore black, white or grey clothes. I always imagined this to be out of habit, but after seeing a programme on TV about Temple Grandin, the autistic woman who designs amazing slaughterhouses for cows using her exceptional visualisation skills (Grandin 1995) and who also wears the same clothes every day, I understand that it means not having to worry about what to wear. Not having to think about whether things match or go together.
She had a very restricted diet throughout her adult life, consisting almost exclusively of cheese sandwiches and tea. She found no enjoyment in food and only ate because she had to. I have met others with AS who eat quite unvaried foods. Reducing the need for thought or anxiety in certain areas makes life easier for people with AS, which is why many have rituals and routines for things they do daily: âI know I like cheese sandwiches, so it is predictable. If I think about having something else, I may not like it or may not have the required ingredients, so best to stick with what is known.â
She had a phenomenal memory and could recount physical details of her childhood home to an amazing degree. She could recall how many stairs there were between each floor, the location of the light switches and the colour and pattern of wallpaper in every room. Her descriptions were very vivid and suggest a strong visual memory often ascribed to people with AS and mentioned by Temple Grandin (1995) as one of her strongest features.
Despite continually telling me how clumsy I was, she herself was known to be highly destructive. She went through kettles and irons like there was no tomorrow, always managing to break them. She would not ask for help in doing heavy tasks, even into her 70s. If she wanted something doing, she would not wait until help was available, she would do it herself, even when it was clearly not safe to do so. Mum once carried a sheet of wood, 8â x 4â in size, balanced on the top of her shopping trolley the mile or so home from the DIY store. My father had worked with power tools in his job and she had kept this huge, industrial electric saw after he had died. She decided one day that she needed to cut a piece of wood, didnât bother to get the work bench out of the shed or ask my brother who lived nearby, so just laid the piece of wood on the floor to cut it, resting her foot on it to keep it still. Needless to say she wasnât strong enough to brace against the kick of this enormously powerful saw and it bounced off into her foot. She was about 72 at the time. She was fine about it, still didnât accept that doing things differently might have been a good idea and couldnât see the fuss everyone was making about how dangerous it had been.
She had a strong sensitivity to smell â certain things made her gag and retch. At the time it seemed that she was over-reacting to something fairly minor. Her reaction was quite inappropriate; she would loudly screech her disgust wherever she was and almost vomit. This reaction was not caused by anything really revolting â being given a cup of coffee instead of tea, or eating a doughnut with too much sugar on would do it. She hated the countryside because it was smelly. Whenever we drove past a field of cows she would hastily reach in her bag for her Olbas Oil (a strong-smelling mixture of plant oils including eucalyptus and clove), shake a few drops on to a tissue (of which she always had many stuffed up each sleeve âjust in caseâ) and cover her nose and mouth with it and inhale. It was like her reaching for her mask in times of gas attack â a desperate flurry of activity in order to eliminate the poison (cow poo). It was considered weird and funny by my family, but no more than that. She was never really able to express how awful it must have been to her in a way we could appreciate.
Mum found being with lots of people very difficult. She would sit in the kitchen alone when people came round, she would never attend my fatherâs work parties â my sister went instead. At my own wedding, you can see her straight, unsmiling face in amongst the other guests (she hated having her photo taken). Watching Temple Grandin on TV in a similar role brought this back to me very strongly as I had forgotten about this physical characteristic. She never popped in unannounced into neighboursâ houses, like they all did to each other, she was very private and self-contained.
As a parent, she was utterly dedicated to providing care for us. I am the youngest by 15 years so spent much of my childhood as virtually an only child as my siblings were at college by then. Mum had never wanted to have any children and quite openly said so. She also said that she would prefer not to be here (i.e. alive) and if she could find a guaranteed way to resolve that then she would take it. I often felt very sad for her and assumed that she must have been terribly depressed and was crying for help. There never seemed to be any emotion when she said these types of things, and with the knowledge I have now I believe that these were simply facts or truths for her. I have met other people with AS who express similar thoughts in a similarly factual way. When I would be upset by her saying these things, she would look genuinely bewildered that there was any emotional impact on a 13-year-old child, tell me not to be so silly and wonder what was I getting upset about. This is very much my experience of some people with AS â they simply tell the truth and have no concept of whether it is appropriate or helpful to do so. The truth is all and no one can possibly have any issue with it, as it is an inescapable thing. I have no issue with my mum. She did the best she could with what she had. She would never have intentionally harmed me and would have been distraught if she had known that it had any detrimental effect. She was a stubborn, cantankerous moo who infuriated her family with her inflexibility â she would not budge once she had decided on something, regardless of the evidence against it â but she was, and is, greatly loved and missed, and the source material for many strange and funny stories due to her peculiar ways! There are many more examples of her AS-like behaviours but this is not the place for them.
My life has been so different to Keithâs that it makes me wonder how we have anything in common. I suppose I am a psychoanalystâs dream, finding peace and happiness with a man who exhibits the same characteristics as my mother! I include the detail purely for contrast to Keithâs life as mine has been substantially different. What follows is a brief summary of an eventful life.
I was feted as a âgiftedâ child, and everyone around me had high expectations of my potential, especially in language and literature. I apparently spoke full sentences by nine months of age, wrote short stories, entered poetry competitions and performed well at school with little effort. I was very shy as a child. From growing up on a Surrey council estate, I won a scholarship to a private school and was set to go on to great things. Somewhere in my mid-teens, however, I realised that I had no desire to do what was planned for me. I scraped through my O-levels on intelligence rather than any effort, left school at 16 and went to live in a squat in London with a boyfriend. By 19, I was a single parent to my daughter. I got married at 21 to an older man and moved to Lancashire. The marriage lasted a year. I went to college and did a couple of A-levels and ended up at university in Devon. I hated my course, lasted two years and dropped out. I met someone else and eventually we had a son and got married. That relationship ended after 12 years. During this time I had a random series of part-time jobs, including writing a cookery book (Sanderson 1994), as I felt that my place was with my children and that their needs came before my own â an immovable belief that I have inherited from my mother. Since the end of my second marriage several years ago, and the increasing ages of my children â my daughter has now left home, my son is almost a teenager and lives partly with his dad â I have finally started to spend some time by myself deciding what I would like to do and establishing a âcareerâ of sorts for myself. Perhaps unsurprisingly, this has led me to work in the area of disability teaching, and ultimately AS. I worked for several years in a college supporting and teaching learners with disabilities, some of whom had AS, and yet I never spotted this in those in my personal life.
Purely by chance I saw an advertisement in my local paper for my current job as Training Manager for a new project working with AS adults. I applied and was successful. The...
