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I was born in Lancashire in 1975 to parents who instilled a combination of strict discipline and love in equal measures upon myself and my two sisters. There is often a misconception that children with Aspergers misbehave, that they are just naughty. As a child it never occurred to me that I could answer my parents back or that I could demand things. It is still a bit of a shock to read of “typical” children who “push the boundaries”, to read of things like “pester power”, since those concepts were very much alien to me. It is not that I wanted to do them, but lacked the nerve, it is that I didn’t realise I might be able to do them. This is not to say that I was an angelic child, far from it, I had a strong temper when it rose to the surface.

 

As a toddler, according to my parents, I was hyperactive, refusing to stay still for very long and capable of full scale kicking, thrashing, screaming tantrums when I wasn’t happy about something. Pretty much like a typical toddler then, except I have my parents’ assurance that my behaviour was more extreme than either of my sisters and if I explain that my mum was known throughout the neighbourhood as “poor Mrs L” on account of how much hard work I could be, then you might get a rough idea.

 

Whilst my understanding was at a normal level, most of the time I was very quiet (when not tantrumming) and really only spoke to my mum. I rarely initiated, didn’t ask many questions and directed most of my talking to my mum. I was capable of having a conversation, but needed to be drawn out with it. There were also frequent occasions (and this still happens) in which I would have the words in my mind, but be unable to speak, or to move, making it appear as though I couldn’t understand.

 

One of my earliest memories is being asked to put my hand on a supermarket checkout belt and being unable to move my hands, or even say “no”, thus making it appear as though I hadn’t comprehended the question. That my receptive language at that level was fine, that my command of language internally was fine, can perhaps best be borne out by my reaction one day to seeing my baby sister as a newborn.

 

 “Good God, isn’t she bald?” are the exact thoughts as I gazed at her in the pram :D.

 

By the time I was about 7 it was becoming clear, as I later found out, to almost everyone else that there was something different about me, yet I remained ignorant of how I was perceived. I talked extremely fast, to the point that my parents (usually my mum) would have to translate. I would talk through my mum if someone asked me a question and she was there. I still rarely initiated talking and I did not often show if I was upset or happy about something.

 

I do not remember saying to anybody that I loved them, or giving them a spontaneous hug and I can still remember how upset and confused I felt when I kissed my mum instead of saying “thank you” to something. This is not to say I didn’t feel any love towards others, but it was shown in the way I wanted to watch what they were doing and how I believed my parents, in particular, were infallible.

 

I was very much a dreamer as a child, very apt to concentrate on things that weren’t relevant to what was actually going on around me and because of this I missed a lot of things (I still do). With myself it is not a case of not caring, but rather of simply not being aware. If, for example, my thoughts were filled with how I could solve mysteries, then it is not surprising that when my mum announced she needed an operation when I was 10 and she said “you know how tired I am” my surprised thoughts were “is she tired?” I’ve since found out that my mum was noticeably exhausted at various points, which does go some way to showing how unobservant I could be.

 

A further example might be that, despite having memories from the age of 18 months, I have no recollection of the Falklands War, no recall of news accounts, no memory of people talking about it, it is a period that I am only aware of through reading and watching about it once I got older. Of course, I doubt that any 6 year old would be really aware of the situation, but to retain no memories at all of something that must have dominated the news for months does strike me as rather surprising.

 

Between the ages of nearly 6 to 10 I was fortunate to attend a relatively small primary school, set in a medium sized village that thus ensured there was little to disturb my world. I was happy to play games of tag, or sing rhymes, or build dens with others and though I’ve been told I came across as being rather immature compared to others by age and rather lacking in sense, I do not have any particularly bad memories of this time.

 

My perseverations and strong interests were already established by this point, including my obsession with historical accounts of violent death (rather odd since I’m very much a peacemaker in reality). One year I got the same book out of the library every time for months, partly based on the story and partly on the lovely red silky ribbon attached to the book.

 

My difficulties in expressing my needs did not just mean I couldn’t say if I was upset at something, it also led to numerous toileting accidents, since I was often unaware until it was nearly too late and then I would be unable to tell someone I needed to go. My dad, rather exasperated by me, went out looking for nappies for me at the age of nine, though I doubt he would have made me wear them. The accidents, the last one of which was when I was 15, were infrequent enough for them not to be a serious problem, but frequent enough to be a concern and it was these that led to my height and weight being noticed as a concern by paediatricians, who then noticed other aspects about myself and began to talk of having me assessed.

 

I would flap my hands unaware that others were watching, or that it might be seen as odd. I would talk in a rather precise way. I was very good at spelling and reading and could write very creatively, albeit with atrocious handwriting,  but I had appalling co-ordination, came across as rather stilted and quiet, very much a dreamer and, whilst certainly not in my own world, rather preoccupied with my own thoughts.

 

The head teacher at my primary school informed my parents that, whilst I was academic, he would not be putting me forward for the 11 + exam as he didn’t think I could cope with it. I scored relatively highly in the verbal parts of tests and very low on the non-verbal parts — even today most of the answers to the non-verbal questions are wild guesses. I’m fortunate enough to have a good long term and rote memory, which comes in very handy when doing trivia quizzes :).

 

The worst time of my life, the time in which my differences and difficulties were noticed more strongly by others, was during that time that is notoriously difficult for anybody, the teenage years. With retrospect, in a way, I was fortunate in that, whilst I was aware I wasn’t popular (it’s a little difficult to ignore when people are saying things like “if I was her I’d kill myself”), it did not occur to me that I should try and fit in.

 

I didn’t deliberately set out to be different, to feel set apart from everybody, but instead I continued along my own path oblivious that it might be different to the ones others were taking. I saw nothing wrong in reading books about the town I was living in, printed 10 years earlier, rather than joining a group to talk to. If the school hall was too nosiy and crowded to eat in, something that at the time I couldn’t articulate, but knew I couldn’t eat there, I didn’t think to tell a teacher, but instead first ate in the classroom and then gave up eating altogether during the school day.

 

I had no concept of peer pressure, hardly surprising since I barely spoke to anyone, though I could talk sometimes and wasn’t particularly aware of the trends prevalent at the time. The concept of gossip, of talking about someone was something I could never grasp either and when I talked to others it was seldom about people and mostly about events. I went through my breaktimes staring into space as I was verbally bullied, unable to respond most of the time (though I was able to storm out of the class on a couple of occasions). I never went into town with someone, never had a chat on the phone.

 

To those that liked me I was seen as sweet, immature, not shy if you got to know me but rather lacking in common sense. To those that didn’t, I was stupid, boring, not someone you’d want to know. It never occurred to people when they asked me something, if I didn’t reply it wasn’t that I didn’t know the answer, but rather that I couldn’t get the words out of my mind, it was as though I had a locked door separating my thoughts from my mouth, not through nerves, I rarely felt nervous, but rather through an almost physical incapability of doing so. I equate it (since it has never gone away), with my inability to let go of something that I’m trying to throw, something which takes place more times than I’m comfortable with.

 

My inability to communicate, or even be aware that I should be communicating these things, aspects about myself continued well into my teenage years and, again, still prevails to this day. I spent the entire of my secondary school PE lessons wearing the same PE kit. If I needed new maths equipment, or new pens, I wouldn’t think to ask for them but instead would struggle on until others noticed. I was hopelessly incompetent with maths and science, laughably dire when it came to practical subjects like design and technology and needlework and did well in subjects like English and history and religious studies were my strong memory, my high vocabulary along with my hyperlexic traits (I do not have hyperlexia, but do have many traits of it) and my interest in the subjects ensured I got good grades in those subjects.

 

Whilst I did not consciously think of it at the time, I did pay more attention to what was being written on the blackboards than what the teacher was saying, I would often forget, or lose track of what was being said, but once things were written down I could follow what was expected of me fairly easily, even if, with some subjects, I would still be hopeless with them. I was rather rigid in my outlook, enjoying  reading books over and over, walking the same way to get somewhere, the only exception being my eating habits in which I loved trying new things.

 

 My mum has since informed me that, whilst she knew I was different from many others and that she used to lie awake at night worrying about me, she deliberately brushed aside the concerns of others, since she didn’t want me labelled and placed in a Special School, or placed under observation by a psychiatrist. I am unsure whether things would have gone differently with me if she had. It is highly possible I would have been diagnosed with something, possibly atypical autism (certainly not kanners autism) , maybe some other sort of pervasive development disorder, maybe a combination of other things. Aspergers would not have been considered at the time, since it wasn’t part of the DSM IV criteria until 1994.

 

Ironically, my academic skills did enough to ensure that people decided I could cope and thus no definite intervention was needed and enough to ensure that my inability to really cope in the real world were not fully realised until it was too late. When I started university I had a lot of difficulty in taking care of myself, I didn’t brush my hair, washed my clothes and bedding infrequently, was unable to prepare meals and was very much disorganised. It wasn’t laziness, it was simply a case of being unaware that these were things I needed to be doing. Nor did I realise that, if I couldn’t keep up with things, that I should be asking for help.

 

These appalling life skills have continued to this day. I am able to look after my children by getting into a routine with them and by not presuming that they are the same as me. I don’t have much of a sense of hunger, so will often forget to eat (though things are better now I usually eat with the children), but I do know that logically people need to eat. I will wander round with food stains and holes in my own clothes, but always check my children’s clothes are clean and presentable.

 

When told of how I am, a typical reaction from others is to laugh and say that I am normal for a young mum, I have to explain that I am actually more organised since having my children and that for years I have not been able to really take care of myself. Because of this and because I had an obsession with parenting when my older son was pregnant which ensured I was able to acquire lots of information about raising children and because I will ensure that I plan for things very carefully with them they are happy, well fed, clothed and played and talked to.

 

There is often a misconception that Aspergers parents must be incapable, that if we cannot take care of ourselves, we can’t take care of others and that we don’t care about others needs. The reality is very far from this, my love of routine and of following the rules means I sought advice on how to raise children, my love of reading ensured I was reading and showing picture books to my lads from the day they were born. I sing to them, bake with them (I find it difficult to follow a set recipe but am very good at making up my own and guessing quantities needed), take them on walks (my inability to drive means I get to go on lots of long walks instead), read to them and hug them and tell them I love them every day. I have yet to spontaneously tell others besides them and my husband that they are loved and it wasn’t until my late twenties that I was able to reply with “love you too” to my mum, but I want my children to know they are loved. I cannot make eye contact comfortably, it is not painful for me, but I lose understanding of what someone is saying.

 

About once or twice a day, or once or twice a month, dependant on how things are going, I hear words as though they are in a foreign language and if I have to make eye contact during a conversation the understanding almost always goes away. Because of this I would rather pay attention, even if it looks as though I’m not, than look as though I am and not be. I make eye contact with my children since they are too young to understand my explanations of why it is difficult (my older son has poor eye contact himself) and I want them to know I am paying attention to them.

 

As they get older and their understanding increases I hope they will understand that eye contact does not necessarily mean a person is paying attention and that a lack of eye contact doesn’t mean a person isn’t interested and indeed I do not push for it with my older, autistic son, but both my four year old and my 22 month old are too young to understand if they look at me and I look away, or if I talk to them without looking to them and thus I make the effort to make eye contact with them. With others I do not maintain eye contact, I talk to them and I look at their shoulder, or make very fleeting eye contact every so often, but as I’ve explained to my husband it is not a question of wanting my own way, but rather in wanting to keep up with what is being said to me. I believe if someone is telling me something they deserve the respect of being listened to.

 

I have some mild sensory issues; I get overwhelmed in crowded and noisy places and whilst I normally naturally focus my vision and awareness on a very small area around me, looking at the curve of a letter on a bin, or the line on a flagstone for example, which does help to shut out a lot of things, if I have to direct my attention to a wider field (for example if I don’t know where I am) then I get very withdrawn and find talking nigh on impossible, I get anxious and irritable and become incapable of making any decisions. I hate the feel of water on my face, some materials and have very sensitive skin, preferring strong hugs rather than light touches. It has never occurred to me to ask for consideration or adaptions because of this, though I have ensured I worked in small offices or on my own.

 

 I have a degree, but because I could not cope with any position involving making decisions, supervising others, working as part of a tem (it is not that I dislike others, more that I stick to my own way of doing thigns and can get very caught up in one way of doing something), that I have never had any job that I couldn’t have got if I’d left school at 16 with just a couple of GCSE’s.

 

I am methodical in my research, I can work well on my own and I operate a live and let live policy with others at work, but I am not cut out for a career that involves co-operating and helping others. I have few friends and those that are I see very infrequently, preferring to communicate with them via emails. I find it very difficult to maintain friendships that haven’t been started online.

 

I like other people but find it difficult to approach them and, if I am honest, I am happy not to approach others. I have never flirted with anybody for example. My husband met me at university, emboldened to talk to me by the fact I was on my own, and since I wasn’t aware he was attracted to me I would talk to him about legends, about how boring the lecture was, about maybe that projector in front of us was from the nether regions of hell and didn’t think of what he thought of me. We’ve been married for nearly ten years now and whilst he says he gets exasperated with how I do not understand many things, he is happy and loves me. The feeling is mutual :). He describes me as unflinchingly moral, very trustworthy, with little common sense or practicality.

  This submission shall be the first of two that I shall be putting forward for publication on this website. Neither shall be intended as anything more than presenting my own experiences - and later the experiences of my older son  - and thus I cannot say how typical they are. However, I hope that they prove of some interest to anyone who might be reading them.

 Mel