Home Diagnosis

Issues

Experience Lifestyle Resources Community Neurodiversity

B-ASS

asperger's syndrome information and features

         

FAQ Site Map Noticeboard Guest Book Feedback Recommend Shop  About Me
Once upon a time
Rain Shelter
Jaws
Snatched Moments of Normalcy
War
Fingers & Toes
Once upon a time

My name is Sam, and I began existing with some difficulty back in January 1977. The 25 years that followed were very confusing. Then I got diagnosed with Asperger's syndrome. Now everything is still confusing... just slightly less confusing than before.

My favourite colour is orange. I enjoy reading, I am huge fan of 80's TV series The A-Team, and I love listening to Nina Simone. I'm good at lots of useless things and useless at almost everything that matters, but I cling to the hope the universe has some reason for having me in it.

I could tell you all about my life... but I would have to tell you everything, and I don't have time for that. On this page though I will allow you some glimpses into my world... it does not give you the whole picture, but it might give you some idea.

I always felt like I was and suspected I was different but I didn't know I was for certain. I could never be sure I wasn't just making excuses for myself. I had no way of knowing or understanding that other people experienced the world in a different way to me. I knew I had problems but I didn't know what they were... I didn't even realise how serious they were, because to me they were just normal, they were all I had ever known.

I was 17 before it started to occur to me that there was just something about the way I was. I started referring to myself then as socially disabled. I tried to explain to other people that I was just different and couldn't help it, but no one took me seriously.

It was 8 years later I discovered Asperger's syndrome and was diagnosed. I would never have guessed. I thought I was the only one. It has given me a framework and a vocabulary for describing and learning about these things. A few years ago I could not have written this site because I was oblivious to much of what I can describe here now.

Asperger's syndrome is just a name for something... that was there before the words and would still be there if the words went away. For me Asperger's syndrome is more than a thing I have, but while it is part of who I am, it is not all I am. I don't want it to be the big deal in my life that it is. I wish just being me without this label was enough... but it isn't.

Rain Shelter

If it rained at playtime we would all be herded into a big concrete shed by the playground supervisors to sing counting songs like Ten Green Bottles and One Man Went To Mow. I always looked forward to rainy days. I enjoyed the counting songs. It was better than normal playtimes on dry days when I'd just walk about on my own watching other kids doing stuff and wondering why I didn't have things to do and games to play like they did, but not really caring.

One day, when I was five years old, I went into the rain shelter with the crowds of other kids as usual, but this time for some reason one of the supervisors was held up and we didn't start singing for a while. We were stood around waiting and I noticed some boys laughing at me and saying I must smell because I was stood alone with a big space all around me. I had never noticed before. I knew I didn't smell, but they were right, I was the ONLY person stood alone. I had never noticed or minded being stood alone. Why would I need to be stood with someone? We were just singing... you don't need someone else to help you sing, you just stand there and do it. We were all stood in there together singing on our own as far as I was concerned. I had not been aware of the pairs and groups people formed within that.

I was shocked. Was this something I was supposed to have done that I forgot to do? I couldn't remember anyone telling me to group together with other people. I felt panic. I began to fight back tears. It was like being punched in the stomach. Suddenly, and for the first time, I felt really intimidated by other people. I felt so incredibly alone... so isolated and so vulnerable.

It was like a veil had been lifted and I could see now how important it was that I make friends, but I didn't know how. I really didn't know where to begin. I just stood there feeling lost, hovering slightly closer to other children perhaps in the hope I would just spontaneously become integrated into their group, as if physical proximity was all that was required. It wasn't.

My heart sank because I knew in that moment that I had taken a different path to the other children around me and I was the only one on it. I could feel it instinctively, I was different and I always would be. It was a powerful moment, and I shall remember it all my life.

From that point on in my childhood I became obsessed with the concept of having friends, and I put a lot of thought and effort into trying to make friends, or at least a lot of thought and effort by my standards. The reality was I did none of the things you really need to do to make friends because I simply didn't have a clue, and to be honest, other people meant so little to me back then that I didn't find the process very rewarding.

When I say people didn't mean much to me, I don't mean that I didn't care about people, I mean that my brain just didn't seem to be organising information about people in the way it needs to for them to be 'characters' within your internal world when you think. To me most people were just a jumble of mixed up memories and perceptions... inconsistent, confusing, unpredictable.

In retrospect I can see it would simply not have been possible for me to have maintained social relationships at that stage in my development, but I didn't know that at the time, so I felt pretty bad about it. I have come on a long way since then, but all I can say is that for me things are different in my head now than they were 20 years ago. I have a much more organised understanding of other people now and I can appreciate them as individuals in a way I could not back then, but I sense that it is my own way of understanding and appreciating people... my brains own unique solution to adapting to this challenge. I don't think I will ever see people the way other people do in my mind, but I see that as a strength and a gift. I don't mind being different, but I am glad things are not still as difficult now as they used to be.

Jaws

Play time was always a difficult time for me. Even before the bullying began, I had difficulty joining in with other children's games. I remember Jaws in particular. It was based on tag. All the kids in the playground would come and stand on a low wall and one person would be Jaws and stand out in front. There would be silence as everyone waited and the tension built, then they would shout 'Jaws!' and everyone would jump off the wall and run around. If Jaws tagged them they would stop and stand still with their legs apart. If someone crawled through their legs they could start moving again. The game was over when all but one person and Jaws were still running around. That person would win and get to be Jaws next.

At first I didn't participate because no one told me to. Then I watched from in the background for a while. When I finally decided to go and join in I still had to ask the kid next to me the rules. They told me the object of the game was not to get caught by Jaws. So, when all the kids jumped off the wall and started running around I ran off down the other end of the playground where no one was and hid behind a big flower pot... I had totally missed the point. I thought the other children very stupid to all stay in that same small area where it was obvious they would all eventually get caught. They probably never even noticed I was gone.

The days when they didn't notice me were the golden years. When the bullying started all I could do at playtime was to try and act inconspicuous and keep out of peoples way. I would stand in corners doing stuff like teaching myself to count in binary or humming. Didn't work of course. They wouldn't even leave me to do that in peace. They seemed to think I was doing it to make some point or annoy them. I never did understand.

When I was a kid I played alone a lot. I did have a dolls house and a farm set, but I never played imaginary games with them, I just set them up and arranged them like a museum display. That was the fun part for me. After that I would leave it perfect and untouched for months, except sometimes to look at it for a while. I had collections too... badges and shells amongst other things, and I had books to read and some old records to listen to. Most of all I liked drawing and colouring, particularly geometric designs. I watched a lot of television and if I saw a film I liked I would video it and watch it over and over again, sometimes more than once a day. Every scene and every word of dialogue would be so well memorised I could play it back in my head if I wanted to... I didn't need a television set. If other children ever came over to play they would get the guided tour of my bedroom. I would show them everything I owned and tell them about it at length. This would always result in them being nasty... sometimes they would break my stuff. I couldn't understand why.

My favourite thing was room plans. Don't ask me why because I don't know. I was always picking up leaflets and brochures in DIY stores. By my early teens I had fallen in love with kitchens and even now I will sometimes have a few kitchen furniture brochures around for light reading. At the peak of my fascination I had a massive collection of kitchen brochures from all over Europe that I ordered from interior design magazines. I would design the layouts of kitchens on graph paper. From there I went on to other rooms, then whole houses, estates, and eventually cities. Once we had to stand up in class when we were about 14 and say what our hobbies were... I said my hobby was architecture and designing cities. The whole class laughed at me including the teacher. Who knows, if this interest had been encouraged it might have actually led to some sort of career.

It took me a long time to learn how to enjoy the company of other people, but it hasn't done me much good, because I have never had many opportunities to socialise anyway. It is just as well I know how to keep myself entertained and find interest and amusement in things like reading and designing because my life wouldn't be worth living if I didn't. A few years ago I discovered that some people pretend to enjoy doing intellectual things because they want people to think they are clever. It was upsetting to realise that this is what people had interpreted my behaviour as, especially as I have never had much choice in the matter.

I don't really ever think of myself as lonely because this sort of life is all I have ever known, but I have thought about it a lot and I think I am lonely, it is just I accept it as normal. Sometimes I wish I could get out more and do things  and have friends like I see other people having, but I think these things are out of my reach. Instead I potter on, day after day, being incredibly dull and boring by other people's standards. Never going out except to go to work and always working on crazy projects that I can't wait to get back to.

The worst part is not wanting other people to know. People find it hard to understand. Every time people ask me what I did at the weekend I feel panic, not because I didn't enjoy my weekend but because I never have anything to say... I don't know what to say, I mean, should I lie? Should I just make something up so I sound normal? A person could start to live in dread of Mondays. These days I just tell the truth and make no secret of the fact that I don't get out much, but people look so horrified and upset, especially when it is week after week after week. I know they are probably just concerned, and that is when the advice starts... why don't you go there, do that, join the other... get out and make some friends. Then what am I supposed to say? How can you explain to people that unlike them, no matter how much effort you put in, those sorts of things never work out.

In the past I have often come to the conclusion that it would be best if I just avoid people for their sake and for mine. I don't want to live like that though. I don't know where to begin, and I haven't got much to work with, but if there is a way for me to lead a fuller life I will find it. I don't want to spend another decade locked in this prison of my own creation.

Snatched Moments of Normalcy

I watch people... a detached observer. I read books, and see films and television shows. I know what it looks like, this thing that I am supposed to be. I take pride in my ability to come across to people as confident, friendly, and 'normal'... it is the result of years of study and practice. On a good day I can even fool myself... walking down the street with my head held high, for a moment or two I can feel like all the problems and the struggles are behind me... but they never are.

It angers me when people who have no experience of it for themselves try to say that Asperger's Syndrome 'isn't real' because they can explain away people like me by saying that we are just social failures either because we aren't very nice people or we are screwed up or we didn't try hard enough. If this is you, before you start congratulating yourself on your genius, you should know that you are stating the bloody obvious, I mean, don't you think we've thought of that? Don't you think that I spent years and years and years of my life lying awake at night blaming myself and thinking exactly this. I'm not saying that there aren't some people who are like that in the world, but people who know me, know that is not me, but nonetheless I have difficulties with things that if I don't explain to people can lead to misunderstandings. It is as simple as that. My brain is wired differently, it makes some things difficult for me, people can't see the difficulties I have because they are happening inside my brain, but they can see the consequences of them, so I have to be able to explain them.

A diagnosis of Asperger's syndrome is just part of that process of explaining, and it is a really important part because this is a really complicated thing. You can't spend two to three hours trying to explain your brain to everyone you meet. Besides, there is a major problem in talking about what it is like in your brain. Every time you start trying to describe things people automatically start comparing it to their own experience, and because of the limitations of language, when it comes to describing something as subtle and complex as the workings of the mind, most of what you can say is pretty meaningless. It's been years since my diagnosis, and I am still gaining fresh insight into myself. I don't have all the answers. All I know is what it is like to be me . It's too much for me to try and say it, so I write it here in the hope it will enable people to understand just a little bit.

Imagine you are just starting to get to know some new people. They seem really nice and you like them and they seem to think you are OK too. They ask you to join them for a drink or for lunch and you think that would be nice so you say yes. Everything is going OK until you sit down and everyone starts talking. You want to talk too, and you know you should be saying stuff, but it is like there are no words in your head. Your mind is not totally blank though because as they are saying things they are triggering memories and thoughts, but they are totally personal to you... like word association. You could try to say some of them out loud but they would sound odd... random, or like you were trying to turn the conversation around to talk about yourself. Other than that though your mind is just empty. You can't think of any questions to ask and you have no idea of what would be the appropriate things to say. You become conscious of trying to make up for this with body language... smiling, nodding, making your eyes look interested. You start to realise that you are tuning out of the conversation... you've not been listening or tracking what has been said and by whom, it has all just turned into meaningless sound. You're giggling and grinning and raising your eyebrows and you haven't got any idea what is going on anymore. You might be okay... They might not have noticed, but all the same you won't have actually advanced your friendship or your bond with them at all, and  if they ever refer to something important they said that you didn't pick up on later they will be offended that you weren't listening or didn't remember. Imagine this was what it was nearly always like, not just a one off or a bad day... Imagine that.

Imagine going for an evening out with some casual acquaintances, any of whom are potential friends. You get a drink and sit down with everyone at the table and people start to chat, sometimes as a group, sometimes in pairs or groups within the group. With all those voices going at once and possibly background noise as well it becomes really hard to hear or focus. You put in an extra effort to think of things to say but you just can't get the timing right... It's like playing jump rope (you know that game where two children turn a rope and a third child must 'jump in' and jump the rope for as long as they can and then 'jump out' gracefully without the rope ever having hit them)... except you keep hitting the rope or getting tangled up. People start to lose patience with you, perhaps just a tiny bit, but enough for you not to be making a good impression. If the stuff you manage to say doesn't hit just the right tone with them it will be even worse... and if all the things you can think of to say are too deep, intellectual or geeky for the crowd you are with then failure is inevitable. You can feel it all going wrong and you start to become afraid to speak. You float away from the conversation and are left isolated... surrounded by people talking to each other, and you, on the end or in the middle, sat talking to no one, nursing a drink with a studied air of nonchalance and wishing the ground would open up and swallow you whole, feeling like you might pass out any minute from the overloading effect of all the noise and the lights. They will be offended if you leave early now, especially after looking so bored with their company all evening. If you stay though it will just be more of the same, and the longer it goes on the more people will notice and take offence anyway. It is a catch 22 situation. There is no way out, well, that's not strictly true... there is one way out... get drunk. If you do that all the time though, not only is it not a good lifestyle choice, it really doesn't work in the long term if over used, and I know that, because I tried it. It didn't win me any friends.

Imagine you are just chatting to people you have bumped into in the canteen at work. In a professional context you have no problem communicating with them. You've even made the right noises in the occasional piece of office chit chat. Now they are trying to get to know you better, asking you questions about yourself, and taking an interest. It's like a giant spotlight is suddenly burning down on you... a spot quiz... the Spanish inquisition. You want to answer but you just can't think how to. You struggle to hide the hesitation, you grin like an idiot and hope they realise this is you trying to communicate friendliness in the absence of coherent speech. There is no time to think so you blurt out an answer which may or may not be appropriate, may or may not answer the question, and may or may not even be true. If you are unlucky you might never get an answer out at all. Most of the time though you pull it off, people take you at face value, and apart from thinking you are a bit odd, they accept what you say. That is little consolation though for you, when it has been so difficult, and when you may have expressed an opinion which is the opposite of what you really think, or answered a question with incorrect facts, and now you can't take it back or correct it and instead you have to try and keep track of what you have said and to whom so you don't go around contradicting yourself all the time. I ask you... imagine that for goodness sake.

Imagine that experiences like this are the only social experiences you have ever had. You're always at the 'getting to know people stage' or the 'acquaintances' stage or the 'knowing people through work or school but never being included in their life in any other context' stage... it's like being forced to act out the same scene of some social farce over and over again until you know the lines so well they are burnt in to your brain. You never get to the end of the play, you just keep going over and over the embarrassing bits.

Every success you do have simply serves to raise people's expectations of you, resulting in them being even more offended when things don't go so well. I think for most people one of the hardest things to understand about Asperger's Syndrome is how someone can 'manage' to be how they think they should be some of the time but not all of the time... surely you can either do it or you can't. When you appreciate though just how difficult it can be and how much concentration it can take and just how much luck is generally involved, you can easily see why it is not possible to consistently apply even the most well learnt social skills.

A lot of the time I choose to be alone because all this is so frustrating and depressing, and often I need to be alone because all this is so exhausting and risky. Imagine no matter how much you like people or want to go places and do stuff with them, no matter how nice they are and how included they try to make you feel, all you can do is protect their feelings by hiding all this as best you can. There is almost nothing you can do for yourself. You always feel on the outside.

Most of the time it is no great loss. There are an awful lot of people in the world who are no damn good and who are just not worth bothering with. I have met people who within seconds of meeting me can sense something is not quite what they expect from people and they don't like it. These sort of people are cruel, judgemental, suspicious and mean. They are the sort of people who if they lived a few hundred years ago would have taken delight in witch burning and stoning people to death without trial. These days they content themselves with teasing, humiliating, ostracising, and tormenting. I don't lose any sleep over avoiding them and will congratulate myself on being able to keep myself otherwise entertained, not being dependent on them in anyway. I've laughed in the face of people like this, because I know the thing that hurts them the most is knowing that I would rather be on my own forever than spend a day in their company. They could not be so strong.

There are good people in the world though... sensitive, thoughtful people, kind people, open minded people. Just like anybody does I meet people that I like, that I get along with and that I feel comfortable with from time to time, though people this special are rare. I want to be able to talk to them and get to know them, and I want them to enjoy my company and take an interest in me, but It doesn't matter where I go, or what I do, or what I want... the same old problems follow me.

I was born a self confident and outgoing person, but I have been unable to apply it or channel it into social behaviour. Somehow it has always gone wrong. Bitter, bitter experience has made me shy and reclusive... has drained me of my confidence, and left me clinging to the shreds of hope... hope that one day it will all work out.

So if I could take a magic pill that would re-wire my brain into a non-AS version of me would I do it? No. No hesitation... I wouldn't do it. It would be suicide, and if I wanted to commit suicide I could have done that ages ago. My brain wiring, for all the difficulties it brings me, is part of me... it is me. Any me without AS would not be me. Any me without these experiences wouldn't be me either. I actually get some perverse pleasure out of being different. I like being special. I like being able to see things most other people can't. I like being able to think about things in ways most others can't. There are people with AS who have great careers, who have friends, who have husbands and wives and kids. It is possible for us to lead as full lives as anybody, it's just the odds are rather stacked against us, and while I consider myself luckier than most, I have not been especially lucky. I am not ashamed of who and what I am. I don't want pity or charity. I just want what everybody else wants, what nearly everybody else has, and what most people can take totally for granted... a full life. Myself, and a lot of people out there like me, we can't get this on our own. We can only get half way across this bridge... we need you to meet us there.

War

When I was little I felt under attack most of the time. I used to think maybe I was in a war. My senses were always being overloaded and people were always confusing and frustrating me. Everything was inconsistent... nothing made sense. I just couldn't seem to find anything to grab on to to steady my mind. I lived totally in the moment, desperately scrabbling to achieve some sort of order in my life.

I was bright but sensitive, happy but highly strung, independent yet needy. I would get so upset and worked up about things. I would have hysterical tantrums, hit other children... I only wanted to be good and do the right thing, and under the best of circumstances I could be a perfectly well behaved child. I was never naughty, always sensible, and I always told the truth. I just went nuts every time things didn't go my way. Naturally people thought I was spoilt and attention seeking, but I wasn't, I was just struggling to cope.

I found it very difficult to learn from experience when it came to interacting with other people, because no two situations ever seemed the same. I couldn't see the bigger picture, only the details. I felt like I was fading in and out all the time and everything just seemed fuzzy in my head. If you have ever tried to read in a dim light, that is the closest I can get to describing how it felt straining my brain to try and make sense of people and what was expected of me. For a small child I had a lot of stress, and I didn't know how to handle it, so sometimes I got out of hand, and it certainly felt beyond my control.

Other people seemed to find it all so easy, it was like they were all in a secret club that gave them special powers and privileged information, and I was not a member. I can still remember all the little things that puzzled me so much back then, which shows just how big a deal all this was to me at the time.

I thought that all boys looked the same. I could only recognise people by the clothes they wore, and all boys wore very similar clothes of very similar colours. I simply had no way to tell them apart because I could not recognise or recall faces at all. I could remember names if they sounded unusual or like the name of an object that I could visualise, but I struggled to associate those names with the people they belonged to in my head.

In my world 90% of boys were called John, and most of them couldn't speak... instead they just made strings of loud aggressive noises that approximated speech. Girls were blobs of colour, texture and smell, all unique, but only some of them were interesting. Girls did not make as much noise as boys, but they were a lot more confusing and unpredictable. They were always telling lies or saying things it later turned out they didn't mean.

Even up to the age of about 9 or 10 I was only vaguely aware of who most people were. I just spoke to everyone the same whether I knew who they were or not, so people didn't seem to pick up on the fact that I had no idea who they were a lot of the time. It was quite frightening for me though when people acted familiar toward me because I couldn't place it in any context... all I could think was why is this happening? Why is this person saying these things to me? most people were just fuzzy inconsistent blobs. There was nothing wrong with my eyesight... my brain just seems to find it very difficult to store and process this sort of information.

It has got easier as I have got older. I have found that if I make a point of using a persons name a lot that helps, a bit like repeating a phone number over and over while you try to find a pen to write it down. It sounds obvious, but you must understand it never came naturally to me to really care what a persons names was, let alone use it. As soon as I stop using it I will forget it. I am the personification of the concept out of sight out of mind... no matter how much I want to hold on to my memories of people, they fade the fastest. Of course, remembering someone's name, that is associating it with memories of things they have said and done, only gets me part of the way there anyway, because associating it with what they actually look like so I can use it is a whole other matter.

Recognising people isn't so bad now but is still a big enough problem to cause me regular embarrassment. I still get people mixed up and walk passed them in the street all the time. I once spoke to a man sitting next to me at work for three days thinking he was the same person who always sat there, not realising he had swapped seats until he asked me if I thought he was someone else. On a day to day basis though it is really not that hard to compensate adequately. I can recognise people by their hair, their clothes, how they move, their voice, where they sit etc. It isn't perfect but it gets me by. Most people do not guess I have a problem until the first time they meet me in a different context to usual and they smile or say hello and I don't recognise who they are. Sometimes they take it personally, but they shouldn't.

Finding my way around is just as difficult. I have serious problems recognising where I am sometimes. I have to force myself to go places on my own, even at the risk of getting lost, because it is only by exploring for myself and memorising whether I turn left or right, go up or down etc. that I can find my way around places. People can't show me or lead me because I just don't take it in that way, and besides, they might take me somewhere and expect me to find my own way back by just reversing the route, but I can't do that. For me the journey back is a whole different journey.

This first became apparent in infant school. Everyday I would ask the teacher to have someone take me to the toilet because I could never make it there and back on my own. The teacher didn't believe me because it was only an L shaped corridor so it was hard to see how I could get lost. To me though it was like a labyrinth. You see, when I go in somewhere and then turn around and come out again, the place I see is a different place. I learnt as I got older that I was just seeing it from a different angle, but when I was little I really didn't know that I wasn't coming out someplace different from where I went in, so I could never picture where I was in relation to places in my head. When she eventually started making me go on my own I would spend ages wondering up and down that corridor looking through the doors of all the classrooms trying to recognise a familiar jumper on somebody so I would know which one to go back in to. I actually trained myself to hold my bladder all day to avoid ever needing to leave the classroom.

It hasn't got much better as I have got older though. When I turn around in an unfamiliar place I am still some place new. It is only by staying calm and working out where I must be that I get by. Once I have learnt what somewhere looks like from a variety of angles I can keep them altogether in my head, but they never quite feel like the same place even when I know they are. It is a situation not helped by the fact that I have much the same problem with place and street names as I do with people's names. I am the worst person in the world to ever stop and ask directions.

Once I took the lift at work instead of the stairs to the second floor, a very familiar place where I would go several times a day. When the lift doors opened though it was just totally unfamiliar because I had never seen it from inside the lift before, and even though I could see the floor number lit up and I knew I had to be in the right place I could not bring myself to step out of the lift for fear I would get lost. From inside the lift I was actually looking at the door at the top of the staircase that I usually came up. I saw that lift I was stood in opposite me everyday when I came up those stairs. It was no good though, I just felt so disorientated and confused about where I was and how my eyes seemed to be contradicting what I knew was true...  I took the lift back down and took the stairs back up instead.

This really doesn't bother me that much at all though. It just feels normal to me and I know what I need to do to get around it. Sometimes it is embarrassing, and it is hard to explain to people, but it really is the least of the embarrassing and difficult to explain things in my life.

The only other thing I would say is I am glad in some ways that people didn't know what was wrong or couldn't see how I was struggling when I was a kid. I wouldn't have wanted to have been wrapped in cotton wool. I have the independence I do now precisely because I had to learn how to do deal with these things for myself. It would have helped to have understanding, and it might have helped to have someone who understood what it was like pass on to me their knowledge of how to deal with it and cope with it. But if my behaviour had been constantly excused and forgiven and if there had never been any reason for me to learn how to function by myself, I think I would have been lost to the world.

Maybe it is like learning to walk a tight rope. You can't learn how by just watching from the ground, you have to actually get up there. Having said that, you should always have a safety net because falling is part of learning. I suppose the thing I regret the most is that I didn't have a safety net. I got hurt a few times.

Fingers & Toes

My education never really worked out like it should have. I actually started school a year early and it was my own fault. On a routine visit to the local health centre I had seen children playing with coloured blocks and I cried until I was allowed to do the same. They were actually the pre-school tests, and I passed them, so I started school at age 4 instead of 5.

My memories of class are mostly of endless conflict with both my fellow pupils and the teachers. In itself this was a major distraction for me and made it very difficult to complete the work I was given to do. What really didn't help though was that I never understood what I was being asked to do and why. I have always had trouble following and remembering verbal instructions, so I had to keep asking the teachers and other kids what I was supposed to be doing over and over again. Even then I found these explanations rarely made any sense to me and this would lead to further conflict and disruption.

I soon gave up trying to understand what was really required of me and I just started playing along. I was always copying other kids and asking them the answers. The teachers never seemed to notice. I didn't think I was cheating... as far as I was concerned I was doing what I was asked to do... literally. They said write down the answers and I wrote them down. They never said anything about where or how we were supposed to get them.

This was a particular problem in maths. I really struggled with written arithmetic because if it was ever explained I must have been off sick that day. When we did times tables we had to memorise the answers to lists of sums, and I naturally assumed this was the case with all sums. This mistaken assumption undermined everybody's attempts to explain sums to me. I couldn't figure out where everyone else was getting the answers from, and no one seemed able to tell me. By the time I was 8 years old this was becoming a serious problem. My teacher was a childish, impatient, and bad tempered woman, who liked to teach maths by using fingers to count off numbers. I didn't know that was what she was doing though... she never did explain, even though I asked her to demonstrate this magic finger waiving method of divining the answers to me on numerous occasions. She went so fast and it made no sense... we had sums like 43 + 32 and she only had 10 fingers. I could see she was doing some sort of counting, but even I knew that 43 and 32 were much bigger than 10 (I realised years later she was using some fingers to represent tens and others units). She made it look so complicated. I convinced myself that maybe she wasn't just using her fingers. I even started to take my shoes and socks off in class to see if having 10 more digits in the form of my toes would make it any easier to figure out what she was doing... it didn't.

Anyway, I began to pretend to be sick so I could disappear off to the toilets and avoid doing maths lessons. This just made the teacher hate me even more, (and make no mistake, she did hate me). The day came when she made me stand up in front of the class and write the answer to a sum on the board... I think she was hoping to force my hand. The problem was, I didn't know the answer, and I said I didn't know the answer and I didn't know how to get the answer and could I please sit back down. Instead she got the whole class to give me a slow hand clap for ten minutes while I stood there trying not to cry. The whole class was laughing at me. She made it clear I would not be allowed to return to my seat until I at least tried to answer the sum. so in order to end the humiliation I decided to guess. I wrote a shaky looking 7 on the board in chalk... underneath the sum 49 + 56. My teacher said some very nasty things about me, but never bothered with me again after that. Just a few months later we moved up into a new class with a new teacher. He was much better at explaining. I  was good at maths in his class right from the start. On our first day he explained that sums were just a way of drawing what you had done in your head so other people could see what you had done. It still seemed like a waste of time to me, but I understood other people required me to do it so they could mark my work, and I had no more problems with sums after that. I guess sometimes it just takes someone to put aside their assumptions about what people 'should' know and just explain things clearly and simply.

I can't help feeling sometimes though that school just taught me lazy habits and actually lessened, rather than enhanced, my ability to think with the clarity I once could. It was like my brain never quite fitted the training program... I was taught to do things in the way other people had to when I didn't need to. I usually have to teach myself most things because I do seem to have trouble finding people who are able to explain things to me in a way I can understand, though there are a few who can. I practically taught myself to read. At age 8 I had a reading age of 13. By the time I was actually 13 I was reading a book a day... and picking up stuff like Homer and Plato from the library for fun, not through school. I never saw myself as intellectual or academic though. I was always working slower than other people and always struggling to understand. Until my teens many of my teachers had made me feel, or had even told me to my face, that I was thick and lazy and attention seeking. I had no ambitions for myself. I felt totally talentless and worthless.

I was very good at exams though because I am good at memorising things, so suddenly in the last few years of school everyone's expectations of me changed, but I got none of the help, support or encouragement I needed. I only decided to go to university at the last minute because as terrified as I was at the idea it seemed better than facing the world of work, which I was clearly equally unprepared for.

I find everything interesting and I love learning, but it turned out university was only a tiny bit to do with that stuff. I found the work easy, but I felt intimidated by other students who were so good at sounding clever and showing off, and always looking at me like I was stupid because I would express my own ideas in my own way instead of just quoting from books all the time like they did. The parts of my course I was most interested in were cancelled because I was the only person who was interested in them, and I started to get bored. The lifestyle didn't suit me. I had tried very hard socially, but it was in a whole different league to what I was used to (not that I was really used to any league at all), and I messed things up with people big time and made a lot of social mistakes. I was on anti-depressants, not eating properly, never getting out of bed, struggling with money... I had only one reason to stay and that was to get a degree.

I went to the careers advice centre to find something I could use that degree for. I spent hours there day after day pouring over job descriptions and doing tests. I left knowing that it didn't matter how clever or not I was, there was not a single degree level job on this planet that I could have done with my social and communication skills as they were then. So, I decided to quit and seek experience of life instead of knowledge from books, thinking that maybe, hopefully, I would improve myself in this regard, and work my way up in life.

So I dropped out in my second year, and I got some experience of life, and I have improved a lot, but not enough. I've been shuffling myself sideways rather than working my way up. At first when I was diagnosed I felt very bitter about this. I felt very let down. I know I will probably never be able to fulfil my full potential. But then, what does that mean anyway? My potential is only what I can realistically achieve, and that might never be very much compared to what people's expectations of me have been. That's life though, and you have to be philosophical about it. I have to be realistic about what I can and cannot do.

Sometimes I feel bitter and let down, but mostly I feel pretty fine with who I am and how things have worked out. I don't much rate societies definition of success, and I place little value on the sort of personal attributes that enable people to thrive in the education system and the corporate world. I work really hard at my life in ways other people either can't see, appreciate or understand... this is where I apply my intelligence, creativity and skill. I get to invest all my potential in myself and the people and causes I care about, and my life is richer for it. It ain't so bad being me.

When I was 4 years old I used to cuddle my wheelbarrow in bed because I liked the smell of new plastic.

FAQ Site Map Noticeboard Guest Book Feedback Recommend Shop  About Me
Home Diagnosis

Issues

Experience Lifestyle Resources Community Neurodiversity