Writing Fiction

I had a friend at university who told me I was better at writing theory than writing the creative stuff. I knew I was a good critic, and good at analysing things. I thought I could be equally good at writing creatively, of course I didn’t know I was autistic at the time. I wonder now if I could ever be a good creative writer. Maybe I just needed to find a style that suited me.

I think the key to writing good fiction, to writing anything, is to really love what you’re writing about. With me, I was always trying to write something I thought would impress my teacher, or at the very least she would like. But that’s how I behaved in all areas of my life, I’ve spent my life trying to fit in. The idea of sitting down and writing a story I really wanted to write is a bit strange. I think you need to drop any pretences and intellectualism and think, what would I write if I wasn’t concerned with what others thought about me and I could just write what I wanted.

Unfortunately, at the moment, I’ve lost my passion for fiction. I don’t feel I have time for it, what with the amount of reading and writing I do around autism and self-development I feel I would be putting the brakes on my commitment to my growth, i.e. finding out about autism and how best I can function in this world, which at the moment is my most urgent task. But I’m like that; I tend to throw myself into something whole heartedly and everything else is banished to the side lines. I think it’s an autistic trait.

My mind is constantly making hypotheses and theories about the world and myself. This is how I spend much of my time thinking, even before I was diagnosed I had this same obsession to find out everything I could about my behaviour and other people; it was almost a necessity. I will not deny I am pretty much socially inept, but if I hadn’t had this ability to analysis people’s behaviour and to theorise about the world and how it works, I don’t think I’d have achieved nearly as much as I have.

I suppose if you are a natural writer of fiction you would spend your time dreaming of plots and story lines and characters. I day dream a lot, and even though other people appear in my day dreams, they are either mute, or saying things I want them to - because I don’t know what they would think or say in the situation I’m imagining. Maybe this is a skill I can practice through writing. I wonder if there have ever been any autistic authors of creative fiction. I did used to write a lot of poetry, but this was mostly just about myself and how I felt. Maybe that’s why poetry came easier to me.

The only thing I did well in fiction that other people enjoyed was the descriptions I gave. I always tried to make my descriptions as accurate and clear as possible and I think I achieved this. People on my creative writing course always said how real my descriptions felt. I think this is because when I’m reading I find it very difficult to visualise the scene the author is describing, so I always put a lot of effort into my descriptions. To make an effective description of a scene you need to come up with unique metaphors. Metaphors make people go ‘Ahhh!’ that’s what it’s like. You take their experience of everyday life and use it in a description of an experience they haven’t had, this makes it real to them.

But a scene needs characters in it that interact with each other. I think I was okay at describing characters. They never felt very real to me though, unless I was basing them on someone I actually knew, I found it difficult to create characters from scratch. I don’t know what other people thought of my characters. But even if I had an endless stream of real characters to chose from I couldn’t predict how my characters would react to each other. At the time I didn’t even realise it was something I should be trying to do.

My plots therefore where guided by events, and people where usually victims of events rather than controllers of events. My plots weren’t people driven. I think this is why I was such a fan of Thomas Hardy. People describe his characters as victims of fate, there is always a sense of something larger outside of the character’s power that directs their life. Also I was a fan of Virginia Woolf, I love her descriptions of people and places, she takes a microscope to the world and can spend a whole novel just writing about one day. She is more focused on individual psychology than how the characters interact. When I first started writing I tried to copy her style, I wanted to write a novel like Mrs Dalloway. It was years ago now, when I was first at university.

I can’t remember when I stopped writing fiction or why. I used to dream when I was younger that I would be a published novelist, but now I’ve lost my enthusiasm and motivation, I guess because I tried for so long without getting anywhere. With what I know about autism, and the things I should be doing with characters I probably stand a better chance now of writing something that works. Maybe I will, when I’ve got my life on an even keel and I’m more relaxed and feel that I have the time. It would be nice to see if I could do it now with what I’ve learnt.

Thinking in Words and Pictures

Thoughts are ideas that our brain has to find words or pictures for. I don’t think my brain likes either medium particularly. But as I am so poor at visualisation, words are my only recourse. Occasionally (not often) my brain just gives up, especially if it is a complicated idea. I get the sensation of the thought in my mind, and I recognise ideas or feelings in it and then I try to work out what it was about. But thoughts are so fast, if you don’t get them straight away you lose the original sense it was trying to convey.

I did a degree in Visual Culture, one of the subjects we looked at was semiotics and at the work of Ferdinand de Saussure. Saussure said that language (words and other systems of signs) was made up of the signified and the signifier. The signifier was the word or symbol and the signified was the object or idea the signifier referred to. He said the relationship between the two was arbitrary and the result of social consensus. Basically the idea exits in your mind first and then the mind has to find signifiers to communicate that idea.

The strange thing for me is that I can have these thoughts, that don’t have words or symbols and I don’t actually know what they mean. It’s my thought, surely I should know what it means with or without signifiers? It’s a shame, because these thoughts are usually about new ideas or ways of explaining the world and my experience of it. Maybe my conscious mind just doesn’t have the language to express them yet.

Not all autistic people think in the same way. Temple Grandin thinks in pictures, she can visualise complicated designs for farm equipment. I wish I had this ability. Instead I think in words. Not because I’m particularly good at it (I think I‘ve shown my language skills aren‘t very good already). I have to think in words because my visualisation skills are so poor. I find this strange, because I am a visual person. I like drawing and painting and I like watching films.

It means I’ve had to work really hard at getting to grips with language. My reading skills were below average for some of the time I was at primary school. I’d catch up, then fall behind then catch up again. I was doing well in all other areas. I don’t think I had any concept that they were measuring us, or that it was important to keep up with how others were doing. I never thought about how other people were doing. And as it was a lot of hard work for me, I wouldn’t always try very hard. Once you reach a certain level of competency though it ceases to have much impact on your work, so eventually it stopped being a problem.

It’s only now, when I’m trying to express new ideas that I begin to struggle with words again. My problem is that I form sentences mostly by recalling phrases. There are certain sentence structures that I repeat. I’m trying to put these phrases together in a way that conveys what I mean and that is also readable and flows and doesn’t sound like disconnected phrases that I have gathered from different places. Occasionally I get a sentence that I know I’ve created myself, I get a particular pleasure when I’ve achieved this and been able to convey an idea in my own original way.

When you’re talking to someone they don’t usually notice if you repeat words of phrases, but when you put it down in writing it becomes obvious. There is a lot of editing that goes on after I’ve drafted something; the thesaurus is my best friend at these moments. I’ve noticed that I also make jumps between ideas, assuming that the reader will understand how one sentence relates to another. Often in my writing sentences don’t follow very well. Getting the words to flow in a sentence is one thing, getting sentences to flow from one to the other is just as hard. I think my writing must sound very methodical.

One way that I practised my language skills when I was younger was by talking to myself. I can remember the exact moment I began doing this. I was sitting in the back of my parents car. We had been to visit my Nan, and I was talking to myself about what had happened. This monologue when over and over in my head till we reached home. I rephrased parts of it then started again. As I got older I would use this a way of working out how I might feel if an event turned out in a particular way, or how I should respond in certain situations.

All this is very essential stuff, but it did have a negative impact on me, in that my mind was doing overtime for much of my waking hours. And if I hadn’t been born a worrier, it’s probably why I’m one now. I over think everything. I also became very focused on me. Because I can’t imagine other people’s responses these monologues were always about just me and my feelings, of course I didn’t realise this until I was much older. Maybe that’s what causes the stubbornness. I’m inflexible to other people’s opinions because I grew up only ever being aware of my own, I wasn’t even aware that people had different opinions from my own until I was about seventeen. And even thought I’m now aware that other people have their own opinions it very hard to undo this way of thinking. I think all this mental activity while I was a child must have wired my brain in such a way that I now find it difficult to undo.

Reading Emotions

When I watch television, I’m always looking for clues and information about human interaction. I prefer sitcoms to soap operas. Soaps tend to be more about emotional tension and conflict and I don’t like conflict. I avoid it wherever I can. I think this is linked to my anxiety. Dr Amen says people who suffer from anxiety avoid conflict in order to keep their stress levels from rocketing.

Sometimes I can be watching a television programme, and I think I’ve got what’s going on and then I’ll watch the same episode a while later and see things I never noticed before. I suppose everyone gets this, even NT people don’t notice everything the first time. I think it’s the kind of things I don’t notice at first that’s different, like the emotional nuances and relationships between characters, and the fact that I go on not noticing for the first, second, third and fourth time - and beyond.

I like watching the Golden Girls. I have the first three episodes on DVD. I watch them over and over. The initial sparkle has gone but I still get enjoyment from watching them. The other day I watched the first episode from series one. I hadn’t seen it for about a month probably. When I watched it this time, I suddenly saw it, totally differently to how I’d seen it before. The actresses looked to be behaving differently with each other, I guess because they didn’t know each other as well. There were less pauses in the script, less non verbal interaction. It looked very different to the episodes that came after. And I wondered why I didn’t notice this before.

There is one scene from a later episode, that is another example of this. Blanche and Dorothy are playing cards, Dorothy’s mother (Sophia) is standing by Blanche giving her hints about which card she should put down. I know this because Dorothy objects to it. But if it had been a real situation I’m not sure if I would have noticed because it never clicked how Sophia was telling Blanche. I’ve seen the scene many times over two of three years, but it wasn’t till recently that I worked out how Sophia and Blanche were communicating with each other. Blanche would touch a card with her finger and look up at Sophia, who would either shake her head or nod. It sounds simple now I’ve got it, I wonder now why it didn’t click before.

Watching these programmes over and over probably wouldn’t be very interesting for most people, but I think I learn a lot from it. I saw a video on You Tube a while ago, of Temple Grandin giving a talk about autism. She showed the audience some research done on how autistic people watch films, and this explained for me why I miss so much information.

She showed a slide from the film Who’s Afraid of Virginia Woolf. First she asked the audience to look at the slide for a few moments, then she superimposed two lines on it. One line showed where an autistic person’s eye would go to in the image, the other represented an NT person’s eye. It was very revealing. There were three figures in the image, Elizabeth Taylor was standing facing the camera, and then there were two men, one with his back to the camera and the other standing side on. The autistic line showed that the autistic person looked first at Elizabeth Taylor’s mouth, wandered a little around that area and the moved in the direction of the man she was facing. I was really surprised, this was nearly exactly what I had done, I think my eye did wander around her face for a bit longer, and I think I glanced up at the third figure. But this was nothing in comparison to the NT individual whose eyes had been dashing between all three figures at what must have been breakneck speeds.

Well, I thought to myself, no wonder I don’t notice all these exchanges that go on between people. I’m not looking hard enough. Perhaps that’s the wrong way of putting it. I do look, very hard, but I’ve been looking in the wrong way. I’ve always thought if I looked hard enough at someone’s face I will eventually find what I need to know about what they’re thinking or feeling. This is wrong of course, I need to be looking at where their eyes go and the other people around them. I’m not sure I can do this though. If I start moving my eyes around like that NT person in the study Temple Grandin showed us, my sight would go all blurry and I‘d lose my balance. It might be easier watching television than real life, your eyes only have to move around a smaller area, the television screen.

I think I look at people’s mouths because it helps me to know what they’re saying as I sometimes have auditory problems, especially if there are other people talking at the same time. This problem with moving my eyes about though, I’m sure has a special name. I read about it once. Autistic people often move their heads rather than their eyes to look at an object. Children do this at first, but then they learn to move their eyes about instead. Eye movements are important for making facial expressions. This could be another reason why I sometimes look expressionless.

The Necessity of Stubbornness

A little stubbornness I think can be good for someone. I’ve been trying to imagine what it would be like to be totally without this trait, and I think it would create a lot of difficulties for me. The ability to stick to your guns, and stand up for what you believe in is essential, not for individual survival, sometimes it goes against our survival, but for our personal progress and the spiritual evolution of humanity.

Without any stubbornness, we would be susceptible to the whim of every person we meet. Indeed, I have meet people who are like this. They don’t seem to have an opinion that is their own, they agree with most everything their friends or partner says. Fitting in and pleasing people is their main aim, this they do for self preservation because they think they have to in order to keep other people on their side. I think this kind of person must have a less stable sense of self.

I like to think of stubbornness as an instinct, one of self-preservation. The stubborn individual and the individual without a low stubborn drive have different ideas about that self. The individual who has no stubbornness in their nature thinks of their self as embodied in the external world. They have to work hard to please people to ensure both their physical survival and that they get what they want to recreate the image they have of themselves in the external world. In the process they lose their inner sense of self because they are dependent on other people’s opinions. It becomes a vicious circle. They confuse the lose of this self with something other people can give them and so they continue their attempts to flatter and please the people around them, and neglect to act according to their own inner voice, thus causing more damage to their internal self.

I have a twin, we’re not identical. People often describe us as being like chalk and cheese. Whereas I am in the stubborn camp my sister is definitely in the opposite camp. I’m not sure there’s a word for the opposite of stubborn. Irresolute is the best word I can find, but it doesn’t seem to encapsulate everything, fickle might be another word but it has lots of other negative connotations. Although being stubborn also has lots of negative connotations as well, so perhaps it’s a fair deal.

Being stubborn can have it’s advantages. People who are stubborn are often strong and resilient in the face of opposition. They have grit and stamina when things go wrong. A stubborn person doesn’t give up on something dear to them unless they’ve given their absolute all. The advantages to being irresolute/fickle is that you are usually better at dealing with people, your less likely to offend people, and probably most importantly you are more open to ideas from other people and find it easier to accept being wrong. I think the correct about of stubbornness can keep you at a happy medium between these two extremes.

Stubbornness and the Cingulate System

I’ve read about a disorder called ODD (Oppositional Defiant Disorder) in Change Your Brain, Change Your Life by Dr D G Amen. I’ve heard of this disorder before, but I didn’t take it seriously. It sounded so bizarre. How could be obstinate be mental disorder, it’s just someone being awkward surely? After reading about half of the book, and seeing the links Dr Amen makes between behavioural patterns and brain activity, and how these can be changed through medication and cognitive behavioural therapy, I was able to accept this disorder as a serious medical condition.

He links ODD to problems in the cingulate system in the brain. This is a section of the brain that runs longitudinally through the middle of the brain. It connects the right and left hemispheres. Problems in this area relate to cognitive inflexibility which can cause; OCD (Obsessive Compulsive Disorder), addictions such as alcoholism, eating disorders, any behaviour that becomes repetitive and that the individual finds difficult to change.

But you don’t have to have a medical disorder to have problems in this area. Dr Amen describes people with cingulate problems and how it affects their personality and how to deal with them. These are the kinds of people whose response to most questions is usually a ‘no‘, they want things done their way, when they say, otherwise they become very anxious and argumentative. Thee people get stuck on an idea and can’t shift their attention onto anything else until what they want gets done. They are people who hold onto grudges, if a situation isn’t resolved to their satisfaction they are unable to let go.

I felt sad while I was reading this chapter on the cingulate system. Everything Dr Amen said reminded me of my mother, she died of breast cancer recently. These aspects of her personality caused lots of stress at times and disagreements between members of the family. I kept thinking, if only I’d read this book sooner, I could have shown it to her, and the others, and we would all have been a lot more patient and forgiving of each other.

It’s not just my mum who had problems in this area. Some of the descriptions also apply to my Dad, my Nan and myself. My mum used to complain how she would sit down with my dad and discuss things with him, and how afterwards he would go and do something different, usually something totally different to what they’d agreed. This caused lots of arguments at home. My Nan can be a frustrating person to try and have a conversation with. She tends to start her conversations with a scripted discourse and won’t let you speak until she’s said everything she wants to, even if you know the answer to her question, or if you want to point out an error. You have to let her get to the end of what she wants to say, even if this means listening to five minutes of extraneous information. I have seen myself do this on occasions.

I think we must be a stubborn family. I’m now wondering if the stubborn parts of my personality could also be due to over activity in the cingulate system. Besides techniques for altering and dealing with the behavioural aspects, Dr Amen talks about medications that can have a dramatic effect on some individuals. These are drugs that increase the level of serotonin in the brain, like Prozac. St John's wort has also been shown to have similar effects. In addition he says there is an amino acid called 1-tryptophan that the body uses to make serotonin which you can get from health food shops. Inositol (a B vitamin) can also help people who are over focused and have trouble stopping repetitive thoughts. I’m not saying anyone should go out and take these, just that there are ways of regulating cingulate activity. It would be interesting though to see if any of these had an effect on myself of members of my family!

Sensitivity to Hard and Soft Surfaces

(This was written in draft before I knew about the different receptors in the skin, including those for measuring pressure. I think that’s what this section is about, my sensitivity to pressure. This is different from the pressure I apply to myself in order to get that sense of internal awareness. This is how your skin tells a hard surface from a soft surface. In much the same way that I am sensitive to one side of the hot/cold dichotomy, I am also very sensitive to one side of the hard/soft dichotomy.

There are some places that look so uncomfortable I can‘t understand why anybody would sit there. Such as coffee shops, where the floor is hard, the chairs are hard, it‘s noisy and the lighting is artificial. I realise now of course that NT people experience their environment in a different way to autistic people. It‘s seems strange that I‘ve lived so long in the world being uncomfortable in it, never realising that other people where having a different experience.

What I found while revisiting this section was that my likes and dislikes, all these little quirky things I just thought were my personal preferences actually have their basis in my biological make-up.)

I love watching property shows, they’re the only things I watch on television these days. If I did buy my own property I would love to hire an interior designer to turn it into something I that would be truly a home for me. I love soft and fluffy things. I don’t like hard surfaces. I prefer carpets to tiled or laminated floors. This means I have favourite rooms in the house that I spend a lot of time in and rooms I don’t spend much time in. I would have to find a way of turning my least favourite rooms into something I would use.

I don’t like bathrooms. Bathrooms are the worst room in the house for me as not only are they covered with hard surfaces and hard objects they are usually cold as well. These may seem like minor irritations to NT people, but for someone with extreme sensitivity to temperature and surfaces they are enough to make me avoid going there unless I have to. It’s the reason I only shower once every two days, and part of the reason my bathroom hardly ever gets cleaned. It’s not so bad in the summer time, but in winter, the idea of stepping out of that nice warm shower into a cold atmosphere is a daunting prospect.

It’s also part of the reason I don’t like conservatories. Unless they are very well made and insulated they are still colder than the rest of the house. The floors are often tiled rather than carpeted, the walls are often left as open stone or brick work - not very nice if you fall or lean against it. And conservatory furniture is often wicker or metal, nothing very soft or comfortable. They just don’t look very cosy. And there is another reason to do with my fear of space, conservatories just look insubstantial to me. Maybe it’s all the glass, the thinness of the walls and the roof. The construction of the conservatory plus the furniture people put in them, none of it feels very substantial to me. I think this is to do with my inability to visualise space or to be aware of myself in it. When I’m walking down the street I try to stay close to the sides of buildings. When I sit down in a restaurant or a pub or anywhere, I much prefer to be sitting next to a wall. I hate being sat in the middle of the room. Conservatories never look like very permanent structures to me.

The kitchen isn’t as bad as the bathroom or conservatory. They can be warm, especially if you’ve been cooking. And normally I only go in there to work. That is to cook or clean, or do other physical work. I’m not sure it’s somewhere I’d chose to relax though. A carpeted kitchen would be nice, you could put some kind of protection over it around the units, some armchairs around a wood burner could work well.

My two favourite rooms in the house then are the lounge and the bedroom. They have lots of soft furnishings and are cosy places to sit. My favourite place to do anything is lying or sitting on my bed. I can watch DVDs, I can write, I can read, I even eat meals sitting on my bed, because it is the softest place in the house. My dream is to have a bedroom large enough to have a sofa and some armchairs and a coffee table in it.

Décor wise, I don’t really like the minimal modernist look, where everything is white and every surface is rendered smooth, and all the floors are laminated. I’d feel like I was in an art gallery or an open plan office. I don’t like open planned offices, and I don’t like open plan homes. It goes back to this thing to do with space. I like rooms to be big rather than small, but with a whole floor that is open plan? It just doesn’t seem very comfortable; noises travel further, you have less privacy and unless you have lots of furniture it’s a waste of space.

Well, that’s just how the whole hard/soft thing affects how I like to live and the type of home I’d like to live in. Generally in my day to day living, it can be a pain, literally. I am very uncomfortable sitting on a hard chair for any length of time. I always seemed to be wriggling about in my chair at school more than anyone else. They were just so uncomfortable. Thankfully office chairs are soft, so after leaving school this ceased to be a problem. It’s a problem when it comes to socialising, because friends want to go places that just don’t appeal to me and I usually end up toeing the line. My parents used to say this a lot to me, I was often being told I should just toe the line (this expression comes from running and means to keep your toe on the mark at the beginning of a race - I just checked it on the web to see whether it should be ‘toe’ or ‘tow’). Nobody realised though, how often I would toe the line and how exhausted it was making me.

I don’t know if this is related, but my skin is a bit strange. If you sat on your hands for five minutes then look at them, your hands would be red and there would be creases in your skin where the fabric from your clothes had made an indent. My skin does this a lot, or maybe it’s just the way I sit or lie. I notice it most on my hands. Because I feel cold most of the time, I do tend to sit in positions where I wrap my arms and legs around myself, so I’m probably putting myself into positions where this is likely to happen, still, I never notice this phenomenon on other people’s hands. Peculiar or what.

Argumentative

Argumentative

Like stubbornness, this isn’t a label I would have applied to myself at the time, but looking back at my youth I did get into a lot of heated debates with people. I used to get very upset when people said something I thought was wrong or inaccurate. I could be very vocal in a debate, I was the sort of person who always had an opinion and I can still be argumentative if it is a subject I care deeply about.

Being argumentative is like stubbornness, it comes from a belief that you are right and other people are wrong. But whereas stubbornness is a refusal to surrender your inner world to someone else’s opinion, being argumentative is turning that stubbornness onto the outer world. You can be silently stubborn, but not silently argumentative. I think stubbornness suits introverted people more, and being argumentative is more likely to affect extrovert people.

These days I’m more likely to let things pass for the sake of a quiet life. But when I was younger I definitely felt I was on a mission to set the world to rights. It was important for me not only to establish the truth for myself, but to establish the truth in the outside world as well. I think I probably came across as very arrogant. Now I recognise that people have to find their own truth. You can be an example to people, but you can’t make them change their ways.

As I became less argumentative with people in real life, I was still in turmoil inside. The arguments I avoided in real life would continue in my head. It just upset me too much that someone was walking around believing something I thought was wrong. Just thinking of the person was enough to set off a long conversation with them in my head detailing why they were wrong, which is a pointless exercise because they can’t hear me. Thankfully I don’t do this as much as I used to.

Part of the reason for these long monologues is that I can’t imagine how the other person would reply. It’s the same when I’m talking to someone in real life, I frequently say things that upset or offend people. I can always work out why afterwards but for some reason I can’t see this before I say what I’m thinking of saying.

Because NT people think differently to autistic people, if I could imagine what they might say it probably wouldn’t satisfy the kind of conversation I wanted to have with them. This would end my imaginary conversation fairly quickly, so it’s a shame I can’t do it.

My Nan was always telling me I had no diplomacy, and my Dad always told me I had no social grace. I was never sure what he meant by this, but I think he probably meant the same thing as my Nan, that I put my foot in it a lot, and offend people. I don’t intend to offend people. If I could avoid it I would. I think my Dad saw social grace as something a person can turn on and off at will, but if you haven’t got it you haven’t got it.

I think what it comes down to is not being able to understand or accept that people think differently and that this is okay. It took me a long time to realise that my family had different values and beliefs to me. It was a big revelation to me, and made sense of a lot of things. Such as why I didn’t get on with them very well. All the time I had been thinking they shared the same ideas as me, and I was saying things that I expected them to agree with and instead they would get upset.

The other day I found a good way to stop thee internal monologues. I imagined I was talking to someone. I wanted to see if I could think of something they might say, and I did manage to think of something. But it was something I disagreed with, this would normally send me off on a long monologue but instead I thought, ‘Oh, well. They’ll probably think something different tomorrow!’. This was a new thought for me. I was pretty surprised by it, but pleased too. It stopped me going ‘off on one‘.

You see, I had been approaching NT people as if they were autistic. So if they said something that was factually wrong I felt I had to show them they were wrong, otherwise they could on believing it till the day they died. But often NT people say things that are just off the cuff remarks without much conviction behind them, even more scary is the fact they sometimes say things they don‘t believe to try and bond with someone, whereas I never say anything on a subject unless I have a strong conviction. I think I come across as a very serious person. One man put it very nicely and said I was very soulful, because everything I said was so sincere.

This trait though has caused me a lot of pain in the past. Family know us better than most, and often I think they would say things they knew would ‘get me going’. Now I see that often they were just winding me up because they knew they could, which isn’t a very kind game to play with someone.

I think NT people find it much easier to change their minds about something than an autistic person, I guess that’s why they think of us as stubborn. But once something is labeled the truth in my mind it is very difficult to remove that label, truth is after all unchanging. Maybe NT people are just more comfortable with things being possibly true and possibly not. An autistic person though has to know which it is. We think beneath all the chaos is a bedrock of truth that can see you through life.

Living In My Skin - Pain

One thing I didn’t talk about much when I first spoke about propioception was pain. However, it is also one of the ‘body senses‘, like touch, and is processed in the same part of the brain. The skin has different receptors for detecting temperature and pain and pressure. I’m very sensitive to temperature, the cold is almost painful to me - which is another reason I walk around looking very tense, other people are walking about in t-shirts and I’m shivering in my jacket. Also I’m very sensitive to pressure. This sounds a bit odd but I’ll go into that another time.

I was shying away from the issue of pain because it makes me feel more like a weirdo than I usually do. But I do have issues with pain. The most obvious thing and least crazy sounding thing is when I don’t notice that I’ve hurt myself. Where as I have a hyper-sensitivity to temperature and pressure, I have the opposite problem with pain. It’s not a serious problem, I’ve heard of people breaking bones and not noticing, my problem isn’t as bad as that but I’m pretty sure I don’t feel pain the same way most NT people do.

Pain is essential because it tells us something is wrong and makes us act to fix it. I remember one time, I was carving a rabbit out of wood for my Nan for Christmas. I slipped with the chisel and it went into the lower joint of my left thumb. It sounds very painful, but at first it didn’t hurt. I just looked down and cursed myself. I should have gone to A&E, but I didn’t have a car or know anyone who could drive me. Later it did start hurting quite a lot. I couldn’t move my thumb for about a week and it was about a month before I got the grip back in my left hand and it’s still weaker than my right hand. If I’d felt more pain sooner I probably would have called a taxi.

Then there are other times when I can be sensitive to pain. One thing I do a lot is to pick at my skin, I pick my spots and I pick at my lips as well. I was a very spotty teenager and this continued into adulthood. I have less spots these days, but I still get a few sore spots when my period starts. For some reason I just can’t leave these alone, I just have this belief that I can remove the blemish if I just squeeze it hard enough, even though logic tells me it will take longer to heal if I pick.

This picking started from a very young age. When I was about six, I grazed my knee. Not an earth shattering life experience but I remember it because it took so long to heal. My parents became so concerned they took me to see the doctor. You see I couldn’t stop picking the scab, and it was slowly getting bigger and bigger. The doctor persuaded me that I had to leave it alone otherwise it would go green and I might get very sick.

I liked picking it because of the scabs. I would play with them; I liked their texture. Then I would squeeze my graze and watch a new scab forming, sometimes I‘d lick it clean. I don’t like describing this because it all sounds like very strange behaviour. But then I was a child and I was autistic. Also taking the scab off would hurt, not loads but it kept me fascinated. I don’t know why I liked it. Maybe for the same reason I stim, I think this has also contributed to the spot picking problem.

I wasn’t going to write about this subject, but then I had a dream, it wasn’t a very nice dream, and I thought if I don’t look at it I’m going to keep getting this dream. It was about people hurting themselves. I wonder if people who are into S&M have something different going on in their brain to other people, maybe their brain is interpreting pain signals as pleasure signals. I think it’s different to what is going on when people self-harm which seems to be a psychological issue. I know autistic people sometimes hurt themselves to create sensations and stimulation in their brain. Banging your head against something hard or soft is a way of doing this. Some autistic people like biting things. Neither of these are socially acceptable behaviour if you a high functioning adult.

I think my spot problem is part psychological and part stimming. My parents were very strict with me. The amount of telling off and discipline administered to me would have been out of proportion had I been a high risk prisoner in Broadmoor. Punishment is a strange concept. Where did we get the idea that punishing someone will make them do what we want, or that punishment is a way of attaining justice? None of us are responsible for administering justice. I’m not saying we shouldn’t have the police or courts, I’m talking about the things you can’t legislate for. You can’t put someone in prison for having a different opinion to you, or for not loving you or for ignoring you.

Anyway, I read somewhere that when we grow up we continue to treat ourselves the way our parents treated us. So if you had very critical parents you will be very critical of yourself. If your parents were always punishing you, you will find ways to punish yourself. I grew up thinking I must be a bad person, why else did my parents disapprove so much of me? I see spots, and think they are the badness inside me coming out, hence the need to squeeze them. When I picked my scabs as a child though all I remember was that I liked doing it. To start with it was probably just that I liked the scabs and the pain was something new to me.

I am wondering now if a lack of pain receptors could be responsible for the daredevil antics some autistic children get up to. Maybe they don’t have as much awareness of pain, so they don’t anticipate it and they do things most other children would be scared of doing. I would often be climbing onto things and jumping from high places when I was a kid. My parents used to call me Action Man. If you experience pain less than other people it will take you longer to develop caution. It wasn’t till I fell down the stairs whilst swinging on the banisters on our landing, and nearly went through our glass front door, fracturing my skull in the process, that I learnt to be more careful. I would still climb on the banisters, I was just a bit more careful.

Stubbornness

Autistic people have a reputation for being stubborn. I have problems with this word. Firstly it a judgement one person makes on another person. Nobody ever describes themselves as stubborn. Secondly I have difficulty defining what it means exactly. I don’t know what a stubborn person is like, I can’t picture them in my mind and I don’t think I’ve ever described another person as being stubborn.

If I was pushed I would say someone is being stubborn if they refuse to change their mind about something when the evidence is that they are in the wrong. But it still seems like a bizarre idea. I only believe things I think are true, I’m not going to purposefully be obstructive and pretend to believe something I know isn’t true. Maybe being stubborn is simply having different beliefs to other people, and what’s wrong with that? We all have to find the truth for ourselves.

I’ve been told by my family I’m stubborn many times. Most of the occasions though, which they would describe as examples of me being stubborn, are in fact examples of their inability to see where I’m coming from. Being fussy about my food, not wanting to wear particular items of clothing, these were all times when they were misinterpreting my sensory problems. This wasn’t me being obstructive, this was me being misunderstood.

There were other occasions when I just wouldn’t believe my parents were telling me the truth. I believed something else and nobody was going to persuade me to think anything else. My arguments may have sounded very strange to an NT person, but their logic was faultless according to my autistic brain. However, I have come to accept that I live in a world created by NT people, a world that doesn’t abide by set of rules, and there will be times when logic can’t help you!

I remember one instance when I was about six. My Mum and Dad told me I had a middle name that was ‘Ann’. But I didn’t believe them. Up to that point in time I had thought I had two names; Victoria Beeching. So when they tried to tell me my name was Victoria Ann Beeching, I was very dubious. How could I have not known my name for so long? I was convinced that what my family was saying was my middle name, was in fact just the word ’and’. I thought they must have misheard someone who had said my names where Victoria and Beeching.

At the time I was having elocution lessons because of my speech problems; I missed the ends and beginnings off words. Most of my lessons where spent repeating words and being told off for missing the ends off them. If your autistic you learn things by repeating them many times, the downside to this way of learning is that once you’ve got it entrenched it’s very difficult to undo it. So when my parents told me I had a middle name that was ‘Ann’, I thought they’d missed the end off the word ‘And’. I’d spent so many lessons being told off for not saying that word correctly my brain found it difficult to get away from this.

This is best example I can think of my stubbornness, and yet I don’t really think I was being stubborn. I can still remember how I felt at the time, and the logic I applied still seems reasonable for my age and understanding. Stubbornness isn’t just about believing you’re right, it’s about trusting other people to tell you the truth. And in my black and white world, either you trust someone or you don’t. You can’t trust people some of the time, and not at other times. You have to make a choice. An autistic person doesn’t have the ability to tell the difference between a person who is lying and a person who is telling the truth. If my family had been consistent and understanding of me maybe I’d have had an easier time trusting them.

Living In My Skin

(I wrote the first half of this before I knew what propioception was. I’ve left it as it is though because it describes well how it feels to have poor propioception - and because it shows how close I was to describing a physiological mechanism I knew nothing about! Which is surely evidence enough that these symptoms and being autistic are not just something I‘ve made up or imagined.)

It’s been cold today. I’m running my foot along the radiator behind my chair. It begins to feel very nice, in a way it doesn’t normally. It’s like that nice relaxing feeling you get during a massage. Your skin is a sensory organ. As an autistic person, who sometimes has sensory issues, I think my skin is sometimes playing games with me.

I think we hold a lot of tension on the surface of our skin and deeper into our muscle tissue. Massage works through pressure and touch. How does our body measure pressure? Do we have nerve endings inside our body or is it through our skin? I can feel the hardness of my bones through my skin but my bones aren’t sensitive to touch, neither are my muscles. But I know when my muscles are relaxed and when they’re not. Maybe my brain can measure the blood flow to my muscles. Maybe my skin can measure pressure both inside and outside of the body, maybe it can measure hardness and softness inside and outside the body.

What I’m trying to figure out is how do we know what’s going on inside our bodies? I’m a very tense person. I find it difficult to let go of tension in my muscles. I remember when I was learning to drive my thighs would clench up, when I realised I was doing it I managed to relax myself. I noticed this in the autistic boy I looked after. Certain muscles in his body were very tense.

I know when my muscles are tense (sometimes) and when they are relaxed (sometimes). Maybe the body has a method for sensing blood flow to your muscles. If this mechanism isn’t working properly how do you know if you are tense? I think you are habitually tense this sense made fade into the back ground.

It makes me think of the question about knowing where you are space. Like when I’m in the supermarket and I think people are going to walk into me or walking into doors and furniture at home. Just this inability to sense my body and where it is in relation to everything else. Wouldn’t this be enough to make someone tense?

I love pressure being applied to my body, I love being squeezed. When I was at school people where often scared of going to the tuck shop. There was no queue, it was like a mosh pit. I used to hang around the tuck shop volunteering to go up for people. Or sometimes I’d just beg a penny off someone and then enter the crush until I got pushed to the front when I would buy my coca cola bottle. I think that’s why I liked scrapping when I was younger, I didn’t ever hurt anyone, I just liked the rough and tumble.

My sense of touch is also distorted. I often don’t notice things like cuts and bruises, but something like a crease in my sock will drive me crazy. Either I am hyper-sensitive or not sensitive at all. As a child I was very sensitive to different materials. I didn’t like man-made materials. I think it’s the electric static that comes off them and also they tend to be itchy and scratchy.

This isn’t a problem now I can choose my own clothes, but at the time it was a nightmare. A refusal to wear certain clothes was simply not acceptable, after a lot of shouting and threats of physical violence the biggest person won. I know they thought I was just being awkward or difficult. They often accused me of doing things just to be different. I was different, I didn’t want to be though.

I think my younger sister used to copy this behaviour. At the time I didn’t understand her strange behaviour or that she might be copying me. It used to annoy me a lot. I remember her walking into a lamppost once. She had seen it but she pretended to be looking somewhere else. I don’t think she expected to hurt herself so much. She got a big bruise on her forehead and I got told off for pointing out she had done it on purpose. Being an autistic child I didn’t understand that people copy each other’s behaviour and sometimes it is even a form of flattery.

My sensitivity to touch is not confined to clothes, I also used to have a problem with touching other people‘s skin. I remember one girl at school who always had cold clammy hands. I would do my best to avoid holding hands with her if we were playing a game like ring a ring a roses. Unfortunately my younger sister also became a victim to this. Something in me labelled her as different, physically she didn’t look like the rest of us (we were all blonde with blue eyes and she had chestnut hair and hazel eyes).

Sometimes I wouldn’t want to sit next to her in the car in case our skin touched. We were a large family and us four kids all sat in the back of the car. I would object if I had to sit next to my sister, I didn’t have the social imagination to realise how this made her feel. Of course I was told to stop being silly. And my other brother and sister returned the favour by complaining loudly if they ever had to sit next to me. Memories like this make me feel very sad. It didn’t have to be this way. Thankfully this skin on skin thing has diminished with age.

I have a phobia about jewellery. I’ve read a lot psychoanalytic literature. I think according to Freud the phobic object embodies the memory of something we have repressed, or feelings we are trying to deny. Which could be true, I don’t know because I’ve repressed it, but maybe it will be a good subject for me to investigate during an art therapy session. It was mostly my twins plastic jewellery that freaked me out. Her plastic beads were the worst, if we were having an argument she would sometimes throw them at me or threaten to if I didn’t shut up or go away.

My Nan was a ballroom dancer and she had lots of fake jewellery. I remember when we used to visit her, she used to make us go into her bedroom and choose a piece before going home. I would usually find a piece of furniture to hide behind at this point. I also remember my granddad yelling at her to ‘leave the poor child alone’. But she wouldn’t. She believed any mental issues could be overcome by force of will. So I would be dragged off to her bedroom and presented with her jewellery box. I would never put my hand in though, so she would chose something and put it into hand which would be held out dead flat and I would carry it to my mother who would put it in her handbag. I’m not sure if this is a phobia proper or whether this is another sensory issue.

Another phobia thing I have, is I don’t like being naked. I used to think this was just embarrassment. But I’ve realised my embarrassment and discomfort goes beyond what is normal. I just don’t feel safe or secure without my clothes on. I used to think this was purely a psychology reason for this. But now I’m wondering if there is also a physiological reason. I don’t like wearing loose clothing, or if I do I have to wear something clingy underneath like a lycra t-shirt or vest.

I think sensory issues are a bigger problem when you’re a child because everything is new. New sights and sounds and new tastes and textures, which is all very distressing when you’re autistic and like familiarity. If today, someone produced an object I had never seen or touched before, I would probably react the same way I did as a child.

Another thing that comes under the sensory issue of touch would be food and what we put in our mouths. My Dad used to call me ‘The Bit Queen’, because I didn’t like food with bits in it. I remember the first time I went strawberry picking. Me and my twin sat in front of the television when we got home and ate our strawberries. I only managed one strawberry though because I had to pick all the seeds out of it first. There was only one brand of yoghurt I would eat, Mr Men yoghurts, because all the others had bits in them.

I think one thing I do which people find strange is the way I touch and rub my skin. I do this with my face and hands a lot. I now think this is a form stimming. As is sitting on a radiator when it’s not cold and squeezing and rubbing my arms. They are all forms of self-stimulation. I read on The National Autistic Society’s webpage that stimming (also called stereotypy behaviour) is usually associated with people who have severe learning difficulties. I think all autistic people stim, they are just more aware of what is socially acceptable and what isn’t. Temple Grandin’s squeeze machine could be described as a way of stimming.

I think the reason these self-stimulating actions have got a bad press is because NT people misunderstand the purpose and reasons for these actions. They approach the behaviour from an NT perspective rather than an autistic perspective. Stereotypy behaviour is defined on The National Autistic Society website as ‘repetitive actions lacking curiosity and creativity’. They lack curiosity and creativity because that is not their purpose, their purpose is to give pleasure and assist relaxation. I’m sure there are actions NT people indulge in, in private, that have a repetitive element that also give pleasure and relaxation. Just because we don’t understand the pleasures of another doesn’t mean we should label the action as pointless or meaningless.

I’ve read that people stim in order to stimulate, under stimulated senses. My hearing and sight are senses that are often overwhelmed but I think my senses to do with touch are very under simulated. These are the senses I’m often trying to stimulate. I don’t get a normal level of stimulation from my everyday interaction. I guess, even though my sense of touch isn’t conveying all the information it should, my brain is still wanting or missing this input. This input seems to be necessary to the brain for it to be happy. Maybe there is a mechanism in the brain that is asking for this input, and stimming is the only way I can provide it because my sensory receptors are not efficient enough to gather the input on their own.

My Career Choices

My first career choice, that I remember, was to be a writer. I remember reading a book when I was about eight, it was a diary of a working class girl. What I remember most is that she got shingles and was sent away to a special boarding school and was feed lots of fruit. This girl always dreamed of being a writer. Her mother bought her an enormous pile of foolscap and she had kept a diary from that day on. (I’m not sure if the book I was reading was a fictional diary or a real one). Today I can’t remember the title of the book or the name of the author. Reading it though was the first time I realised that being a writer was a career option.

I always fantasised about that large wad of paper and filling it with my stories. And nearly thirty years later that fantasy has sort of come true. I spend most of my time at the moment writing, and I have notebooks full of my thoughts and dreams. I’m not writing fiction, even though that’s what I wanted to write, but I have found something I can write about, myself! I am the ultimate introvert, I am my own subject matter. Whilst it’s fulfilling, learning about myself and my condition (autism), I sometimes wonder what kind of writer I’d have been if I hadn’t been autistic.

After my ‘A’ Levels I didn’t know what I wanted to do. I was in crisis. My home life was difficult and I was very confused about who I was and where I was going. If I’d known I was autistic I would not have felt such alarm at going out into the world. I’d have known my strengths and weaknesses and made decisions based on this knowledge. But I was in the dark, and was desperate to leave home. My English teacher tried to convince my mother that English was what I should be studying at university, but my mum thought Art was a better subject for me.

So I did a foundation course in Art and Design, because I trusted my mum was right, even though I’d never had desires in that direction until she talked about it. Looking back I don’t think I’d have been happy whatever I had chosen. Without a diagnosis I wasn’t in a position to make any informed decisions and I was also deeply unhappy without knowing why.

The first degree I did was in Visual Culture. There is really only one career path from this, which would be in academia and I simply wasn’t committed enough to the subject. I did start out on the Fine Art course but transferred after my first year. I was having a lot of difficulty finding suitable subject matter and a style I could paint in. I love landscapes but I can’t do them. I have visual perception problems that make it difficult for me to generalise what I see, rather than painting my impressions I would always try to paint every leaf and every blade of grass. If someone had taught me to paint like the Pre-Raphaelites I might have stayed! I always tended towards realism because copying detail is something I’m good at. So I tended to draw people or man made environments even though I really wanted to do landscape. I couldn’t find a subject matter that matched both my enthusiasm and my technical abilities.

I think if I went back to it now I would be able to find my way round these issues knowing what I do about autism. On the fine art course I was doing the teachers were very hot on us finding other painters whose work we connected with and using them as influences in our own work. Being autistic in an NT world though, I didn’t have this connection and it just became another aspect of my work I had to fake.

My next career move was to study accountancy. People always said how strange it seemed that considering my creative credentials. It was a purely practical decision. I had moved back home, and things were still difficult. I wanted my own place and a decent job to support myself. Accountancy was something I thought I’d be good at and would provide a decent income. And it did enable me to live independently without support. But I was desperately unhappy. I still didn’t know why I felt so different from the people around me. I was though, beginning to realise where my weaknesses and strengths lay. I liked accountancy because I was good at detail and because I was dealing with numbers rather than unpredictable people. My autism leant itself to a job in accountancy where details and repetitive tasks were plentiful but my soul was crying out something more fulfilling.

I left accountancy and did a degree in writing and film studies. I had been doing a part time course in creative writing for a few years and I spent a lot of time writing poetry in private and even sent some of them off to competitions and magazines. I think I had one poem published in a poetry journal and I once was a runner up in a competition. I wanted to see if I would be able to earn a living as a freelance writer. My plan didn’t really work out though. What this course taught me was what I wasn’t good at; journalism, short stories, dialogue, grammar and a few other things. I can trace most of my difficulty in these areas to autism. In journalism you have to have the audience in mind and I can’t imagine myself in someone else’s shoes, I can’t imagine myself as one of the common people, in short stories I’m not able to describe the relationships between people, for my problems with dialogue I refer you to what I’ve written about conversation and for my problems with grammar see what I’ve written about language. I took film studies because at that time at the university I chose you couldn’t do writing as a single honours degree. Although I enjoyed film making, I don’t feel I have the social skills to make it in the film industry.

After I finished my second degree I didn’t have any firm ideas about what I wanted to do next, I was till lost and still looking for my niche. I had always had an interest in spiritual matters, and I was reading a lot of new age literature looking for a solution to my problems. I did lots of meditation exercises looking for some direction. I thought maybe my problem was that all my career choices had been based on what I wanted and maybe I should be thinking of work that involved helping others. In one meditation I saw myself with a pink feather duster walking towards a large manor house. Later I saw an advert for a tutor to an autistic boy, the post was live in and also involved some house work. When I looked up on the internet the village where they lived I saw a drawing of the manor house I had seen in my meditation. I thought, this is where I am supposed to go next.

It was a difficult job and I’m no longer an ABA tutor. But it was definitely a good move. If I hadn’t done it, I would never have found out I was on the spectrum and discovering I’m autistic has been the biggest life changing event so far. I am slowly becoming comfortable in my own skin. I don’t criticise myself like I used to because I know why I do the things I do and why I can’t do the things I wish I could. And I can finally begin to think about what work I could do that will make me happy and that matches my abilities.

Being Too Nice

My lack of ability to read emotions and respond to them has lead me to develop what I call the ‘too nice syndrome’. It means that whenever someone is horrible to me I am nice back. It’s not that I’m a nicer person (although sometimes I think I am), it’s just that the other person has said something with an unpleasant undertone which has confused me and I don‘t have the time to think of what I want to say.

Saying something unkind requires the ability, to know something about the other person which you can use to make them feel bad about themselves. There are just too many processes going on here for my brain to cope with. If I was unkind to someone it would be in a very blatant way, I can’t think of any examples though. Usually I offend people unintentionally simply by stating the truth.

But back to my first condition of bewildered confusion. I know that I need to respond, and I only have seconds to do it within, so I say something that seems appropriate to the situation and because I haven’t understood the persons true intentions it usually something pretty bland and polite. Of course then the person walks away smiling to themselves feeling superior no doubt, and I work out what’s just happened and feel stupid.

It’s not just having a reply that’s the problem, it’s also being able (or rather not being able) to put some expression into my face and my words to show my displeasure with the other person. Even though I may have been hurt by what they did, that feeling doesn’t set off the next feeling of wanting to say something hurtful back. The emotion I do experience doesn’t lead me into any reaction.

I have learnt over the years though that if I don’t show the other person a bit of anger, they will take this as an indication of weakness and feel safe in doing it again, and again. It feels a bit fake and a bit acted but it is necessary. I have an example in this case, I was at the library recently and I had taken back an overdue book, so I had to pay a fine. I had another book at home which I hadn’t brought with me but which I knew I had had for a while. So I went on a computer and checked my account. That’s when I saw that it too was late and had a fine on it. The librarian would have seen this on my account but hadn’t said anything. If I had been in her job I would have mentioned it.

I don’t know what inspirers people to do things that eventually hurt someone else, maybe they get some small pleasure in it, maybe it makes them feel powerful. I thought back to this librarian’s wry smile and thought the error was almost certainly intentional. I walked home to get the book and she was still on the desk when I came back to pay the fine. I tried to look as annoyed as possible and was as curt with her as I could be. Her attitude changed instantly, suddenly she was very helpful and offering to check my other books. Later on, still in the library I received some good news while on the internet and I was walking out with a big grin on my face, unfortunately she caught my eye and smiled back. I didn’t think to drop my smile, thereby undoing the work I’d just done. She now thought we were friends again.

Talking Emotions

Generally I find it hard to think of replies to other people’s comments in a conversation. It is the main reason I don’t like talking to people. Most of the time I am trying to think of something I could say, and worrying if we will run out of things to talk about. This makes me very anxious. I suppose most people feel this to some degree. I used to be talking to someone and at the same time searching for other topics in my head. (I am aware that I can talk about the same thing for too long, which is dull for other people).

I prefer the conversation to stick to factual topics, this is easier for me. But what most people want to talk about, if they are friends rather than work colleagues or fellow students, is things like gossip, relationships, television, events in their life; things which are mostly emotional experiences. In these situations it is especially difficult for me to reply because often I don’t have any response to this information. If I don’t have an emotional reaction to what I’m being told, I have no basis for a response.

It’s is easier to have this kind of conversation by text or email because then I have time to think of a reply. I do this by repeating the person’s words to myself and gradually phrases come to mind that I could use in my reply. If nothing is coming then I will start with something I know is an appropriate response although perhaps a bit cliché and keep repeating this until something flows after it, which is a more genuine response. With this process, even my short emails to friends can take a long time to write.

I wasn’t always aware of this process. I think it is a process even NT people go through sometimes, if they have experienced a very high level of emotion they haven‘t been able to process and they are feeling very sad or very happy. They might play a piece of music that resonates with how they are feeling, as a way of encouraging and exploring how they feel. It’s the same as I am trying to do above, but on a more mundane level.