Mental Disability

I’m trying to think of a term that describes autism. At my doctors it was referred to as a mental health problem. I don’t like this term. I’m not ill, I was born this way. You wouldn’t described someone who was blind as being ill, even if they became blind during their life. Mental health implies you have an illness that is curable. I know people are looking for a cure, and sometimes I read stories about people who have been cured. I don’t disbelieve these cures but hey only seem to work for a few people. The National Health Service doesn’t offer a treatment anyway.

Actually the National Health Service hasn’t offered me anything. My GP sent my report off to my local Mental Health team in October and I haven’t heard anything. Maybe they have a backlog of cases. I read a book recently, A Short Introduction to Autism, I think it was by Uta Firth. She argued that the increase in cases of autism is due to better diagnosis, but also added that clinicians were diagnosing people with autism so that these people could have access to better services even when they thought they didn‘t have autism. I asked myself where are all these services? I haven’t found them. I’ve spoken to parents of autistic children. I know how difficult it is to get help and why would anyone want to label their child autistic if they weren’t?

I like the term ‘Disabled’ although I’m not sure physically disabled people would like someone like me having the label ‘disabled’. I am though. I have little social contact as a result of my autism, finding a suitable job is proving very difficult. Despite being intelligent and hard working, my standard of living has been severely affected. I’m not arguing that I should be able to drive around with a disabled badge in my car, but being able to say I’m disabled and have people accept it would make life so much easier. The problem is that although most people have heard of autism they don’t understand what it is.

The problem is I look ‘normal’. I can have a conversation with another person; talking to people is hard work for me but I can and do, do it. After spending a bit of time with me people figure something is a bit wrong, that I am a bit strange but they can’t put their finger on it. Partly this is because I work so hard to appear ‘normal’. It takes a lot of mental and emotional energy trying to be something you’re not, it’s certainly not a ‘healthy’ way to be. But I’ve done it for so long, sometimes I’m at a loss how to behave.

The only way to overcome this it to talk to people about it. I didn’t like doing this at first but it’s getting easier. I’ve put it on my CV. As soon as I get friendly with someone I tell them. They tend to have lots of questions. I’ve noticed that this tendency to not talk about illnesses and disabilities is common in most people.

I worked with a man who I think had Tourettes. When he got nervous he had lots of twitches and stammered. We became friendly and I told him I had Autism. He asked me questions, I think he was genuinely interested to know. I explained the problems I have with language, my lack of social imagination, my problems with understanding emotions. He was genuinely I expected and wanted him to tell me what his own problems were but he didn’t. He thought it strange that I was apparently so happy to be called autistic. He suggested that such ‘labels’ limited what a person could become. I said it wasn’t just a label, it was an actual condition, and yes it did limit what I could be in this life but that there wasn’t any point denying it.

I wish people could see inside my brain. I would love to get a brain scan done. I would show people a picture of a normal brain and then what mine looked like and say - See! This is what I have to work with! What would you have achieved in your life if this is what you were given?

Talking to Twitter

When I first heard about twitter I thought, what’s the point, you don’t have room to say anything valuable. Then my brother suggested it as a way of advertising my blog and now I’ve had a go with it I love it. I’ve only been on it three days, but I keep wanting to make entries, I’m trying to limit myself to four a day. It’s great. Especially all the famous people on it, you can know what they’re thinking throughout the day even though you’ve never spoken to them. I have three people following me, my brother and two people I don’t know. I love letting people know what I‘ve just done or what’s on my mind. It’s like a global address book. Because you don’t actually have a conversation with anyone, it’s great for autistic people.

I remember I used to get very excited about meeting new people. I was very innocent. Most people when they meet someone new, greet them with suspicion and distrust at the back of their minds. Unless that person looks and sounds like us, we think what do they want from me and how can I protect myself. I was the opposite, like a puppy all excited, I asked myself what this new person would be like, if we would become friends, what new things would they teach me, If I hadn’t been autistic and was able to form better relationships I think I would have been very sociable. After a long time though, several house moves, job changes and two stints at university, I realised I was never going to find the ’friends’ I wanted because I just couldn’t give people what they wanted. Now I’ve been diagnosed I know why that is.

With Twitter I feel free again. I can talk to all these new people I haven’t met and there won’t be any of the stress that normally goes a long with meeting people. No trying to figure out what a person really thinks, no decoding of ambiguous replies, no worrying about if they like you. I prefer it to Facebook. Facebook is an extension of social networks in the real the real world so you still get the same games being played out. You have to accept people as friends before you can interact with them., and there are lots of privacy issues you don’t have with Twitter. As there is no comment facility on Twitter nobody can be rude about anything you write. You can choose to block people from receiving you tweets if you want, but it’s not really necessary unless you have a strong personal dislike of them or they’re stalking you.

What If We Were All Autistic?

Okay, the reason I’m not good at talking and getting along with people (just to sum up) is because they say things I don’t understand (the reading between the lines thing), and I find it difficult to know how people are feeling (the social imagination thing). Also people misunderstand me; this happens when they read something into what I’ve said that wasn‘t there (I’m very poor at innuendo) or I don’t convey my emotions convincingly.

I don’t know what it’s like to be around just autistic people. But I sometimes wonder what if I was in a room of autistic people, and everyone said what they thought, no hinting or trying to fool each other with their social and emotional skills. And we’d just be talking about the things that interest us or sharing anecdotes. What would be lacking? What could go wrong?

I think there could still be disagreement and uncomfortableness. Autistic people can still be offended by something another has said (even if what has been said is true) if it challenges their ego. There would still be the desire some people have to be cleverer than others. That unsavoury part ourselves, the ego, would still be there causing arguments and separation.

As well as having some of the same problems as NT people have when they get together , there would also be things missing. Things that make the gathering of people together worth while. Such as the warmth NT people display; the hugs, the sharing of feelings. Stuff autistic people aren’t good at. If we were all autistic we would be very reserved. (More so than we are now if you’re English.)

Is it possible to have the advantages of autism without the disadvantages? A little voice inside me says not, or only if you’re NT and can discipline yourself to change. Autism isn’t a better way to be, there are too many draw backs. But NT people could improve their own lives if they learnt the lessons we autism can offer.

The following are some examples of autistic behaviour which if everyone adopted would make lots of lives happier. In these examples I’m not saying autistic people have superior morals it’s simply because of the way our brains work, or rather don’t work.

Autistic people aren’t very good at being mean to other people, mostly because it involves a lot of subterfuge, and the ideas and thoughts just aren’t there. We get angry and cross and have negative thoughts but it very rarely translates into action and we have enough social knowledge to know that yelling or physically hurting someone is not acceptable behaviour, so most of the time we can control this.

This trait has taught me that hurting other people because you feel wronged is not okay, not if we want to create an atmosphere of love rather than hate. I find that if I let these angry thoughts just be they go, and eventually the problem works itself out. Where as if I stay mad, the situation just gets worse.

Autistic people behave very differently in relationships to NT people. I’ve been taken advantage of in relationships before, this was because I didn’t know that the other person had different goals than I had. When people decide whether or not a person will make a suitable partner it is usually on the basis of what they can give them. But relationships shouldn’t just be about what you can get from the other person, but what you can both share. Maybe I attracted the wrong sort of people because I’m easily fooled. Autistic people don’t have the social/emotional intelligence to be manipulative in the way NT people are, but I’m getting better at spotting it.

Autistic people are more easily fooled in personal relationships, but NT people are more easily fooled by groups, institutions, any body of people who have formed together under a common cause. This is because NT people have a tendency to sacrifice their individuality to fit in with society. But we have is a conscience, it is our own personal guide to tell us if we are doing the right thing or the wrong thing. Sometimes this inner guidance contradicts what others might tell us, this doesn’t mean our view is wrong. There have been many instances in history when the majority are not always right.

Having the strength of character to think for ourselves and not to just follow the crowd is a great asset in our personal evolution. I think this is easier to do for autistic people because most of the time we don’t know what other people are thinking so jumping on the bandwagon isn‘t a option. There are also advantages to the NT person’s tendency to follow and band together. New ideas and information can spread with amazing speed. You just need to make sure we are spreading the right stuff.

The most important lesson though that autism has taught me is the necessity of honesty and truth in making the world a better place. You may not want to be at first, because maybe you are afraid of what you will find but it is absolutely essential if you are to improve yourself. If people were honest all the time they wouldn’t be manipulative, they wouldn’t hurt each other. They would also listen to their own conscience more often. If you’re honest with yourself there’s nothing else you need to remember.

That seems a short list and it basically comes down to being honest. But if everyone became honest for the majority of the time, the world would change very quickly for the better.

Autism and Sociability

Why do people think they can fix my autism? Why do they think they can ‘make’ me sociable. Autistic people aren’t sociable because they don’t have an instinct to bond with people, but because; a) they lack the necessary social skills and b) social environments are often noisy and there is too much sensory information to take in. Together this makes social encounters uncomfortable and sometimes distressing. Most of the social skills autistic people lack can’t be taught. It’s a bit like a person’s IQ; with practice you can get better at taking the tests, but your IQ will reach a level beyond which you can’t go - your brain just doesn’t have the necessary wiring.

I don’t think NT people realise all the things the do during social interaction, and if they do, they don’t link those abilities with their brain. In the popular imagination our brains contain our intelligence, to be brainy is to be clever. We don’t automatically draw the same connection between our emotional and social skills with our brain. If you think you can teach these things to an autistic person you are saying you think these skills are dependent on intelligence and are therefore only indirectly related to our brain. This is incorrect. The brain has emotional and social centres and if these are not wired correctly you can’t reverse it.

Intelligence can help compensate to some extent. Autistic people get very good at analysing the people around them. I routinely watch the behaviour of friends and friends so I can work out what they genuinely think. I watch other people to figure out who has good intentions and who might be a foe. Of course it’s not always so simple, someone who is a friend may briefly show another side if they think you have wronged them. Or someone who has an aggressive exterior may actually like you but find it difficult to show it. Also this can only be done retrospectively, after the event. I don’t see things as they happen, I need time to ‘think’ about it. Gradually, over time it has gotten easier. You work out the social rules NT people use, and the methods they use to get round those same rules without appearing rude. There is a lot of subterfuge that goes on during social occasions!

In order to enjoy or just survive a social gathering the most important thing a person needs to be able to do is make conversation. Having a conversation requires being able to; a) talk and listen (actions which are in themselves hard work for autistic people whose speech may not be good, and whose hearing sometimes plays tricks on them), b) to imagine the other person’s point of view, c) to be able to read their responses, d) to be aware of a third party’s point of view, society’s point of view to any exchange that occurs e) to have a knowledge of social etiquette.

I think it unlikely that an autistic person ‘could’ be taught to do all of this. The part that requires seeing society’s and the other person’s point of view requires social imagination, which if you don’t have, I don’t think you can acquire. Social etiquette for common situations could be acquired. Speech can be improved with work, listening though, if the person has auditory problems probably not. Being able to read emotions is something that gets easier over time. But lets say the autistic person does manage to do all this, there is one thing you won’t be able to teach them, which is to have genuine ‘appropriate’ emotional responses, and the person they are talking to is always going to know this.

I used to regularly fake emotions in conversations. I developed a habit over the years of exaggerating my emotional responses and over doing it. I remember being at a fire works display, I was enjoying it, I ‘Oooo’d’ and ‘Ahhhh’d’ to show that I enjoyed it, but I clearly over did it because my friend’s fiancé began mimicking me. I would often overdo the ‘Really?’ when someone tells me something unexpected. Then there are other times when I do have a genuine emotion, and I want to convey it, but for some reason it doesn’t come out sounding right.

I don’t do this so much now (old habits die hard), but instead I end up sounding a bit dull. Autistic people sound monotone when they speak because it is emotions which add the colour to our language. They don’t have to be ’big’ feelings. It’s all those little feelings which people have that lights up their speech in a way an autistic person would struggle to imitate.

All this doesn’t mean that an autistic person doesn't want company. Company is good, so long as it’s with people that are familiar and that you trust aren’t going to make fun of you if you do or say something stupid. With people who understand you and aren’t going to place unrealistic expectations on you. Somehow you have to find a balance between stressful situations and wanting to be around people.

Television and Autism

Like most autistic people I liked watching Star Trek when I was younger. Spock was my favourite character and I will watch an episode of the new Star Trek if it has Data in it. (I had a little crush on him for a short while). At the time I wasn’t diagnosed and I didn’t know why I liked these characters so much.

There were things I didn’t like about the Star Trek too. I didn’t like the way us humans thought we were a morally superior race to the other beings we encountered. A successful mission usually ended up depending on one person, usually Captain Kirk, whose ‘human’, ‘irrational’ and ‘emotional’ nature would save the day. It was supposed to be a crew that was representative of humanity but the people in charge were all men. (I was only about 10 at the time but I was acutely aware of these contradictions).

This is a problem I’ve always had with popular culture. To enjoy it the way I see NT people enjoying it, you have to share the values and beliefs of those who have made it. You have to suspended your own judgement and belief system and enter someone else’s. Maybe all those NT people who watch TV and go to the movies are lucky and their own value system just happens to coincide with what they see on the screen. Maybe they haven’t really thought about it and they just adopt the opinions of the people around them, in which case it’s always safest to go with the majority.

It just doesn’t seem important to some NT people, to have some kind of moral framework. Provided they can make it through life and get what they want; a family, holidays abroad, a decent job, nice house, etc… what does it really matter what you say you believe in? I suppose if you don’t have an ideology to defend, adopting someone else’s to get along with people is easy. I think you adopt whatever ideology helps you to get what you want out of life. If you’re a woman and you want a family, buying into a traditional patriarchal ideology is ’natural’. Also in some NT people I think they value ‘belonging’ so much that adopting your societies dominant ideology is almost a duty, and to hold a minority view is almost treason.

Another program I liked watching when I was younger was Knight Rider. Not because I liked David Hoffman, it was the car ’Kit’ I was fascinated by. It was a machine with human intelligence and like Data didn’t have any irrational or emotional tendencies. I didn’t like that David Hoffman behaved in a similar way to Captain Kirk, like some kind of superhero. Why was it women always needed saving and the men had to save them with their courage and brute force? The only way I could justify watching it was because there was a female scientist who worked on Kit.

It’s not just that Data and Kit were rational, unemotional characters, that I liked them. (They would never turn round and unexpectedly yell at you for something you may or may not have done). There was something else that was safe, and comforting about them. They were all knowing, never wrong and never open to criticism. They are what I imagine angels to be like. Despite Hoffman’s crime fighting abilities it was Kit who had to save him by taking him away to safety, over land or water.

One downside to watching programs like Star Trek and Knight Rider was that for a long time I believed them to be a true reflection of how people behaved towards each other in reality. In these programs people were honest with each, didn’t slag each other off, did their jobs properly and had respect for each other. If a character didn’t behave like this they were a ‘baddie’. (I suppose I bought into it because this is how I want people to behave).

It took me a long to realise that in fact, the majority of people have hidden agendas and are often less than truthful in what they tell you and how they portray themselves. Today, with reality television, and the impact this has had on fictional television, it would be easier to see the mistake I had made. What I was watching was society’s highest vision of itself and not a true reflection of how people behave. Maybe it’s a positive thing that we can see human nature in all it’s glory on screen. Before we can change something we have to first recognise it.

Autism and finger pointing

Autistic children don’t point. You have to teach them. It doesn’t seem like a very important skill when you first think about it. Really it is a symptom of a larger problem, maybe to do with not knowing where you are in space or not being able to summarise what you see in your surroundings (generalising details).

The first time I came across the problem of pointing was when I was working as an ABA tutor. The boys mother was explaining to another person what new things we were teaching him, pointing was one of them. A few minutes later she asked me to pass her something, and she pointed. I twirled about looking for the object. She laughed and said ‘Of course we’re going to have to teach Vic first.’

I know what pointing is; why people do it, how they do it, and what they mean by it. It’s locating the object that’s the problem. I never realised I was bad at it until the above incident and when I asked myself do I ever point, I wasn’t sure. I don’t think I do. If I want to show someone an object I am more likely to pick it up myself and pass it to them, or tell them as accurately as I can where it is.

Also, I don’t use my hands when I’m talking. Most people use their hands expressively when they talk. When I had my meeting with the clinical psychologist she told me she noticed that I didn’t use my hands when I spoke. This maybe another reason autistic people are less likely to point while talking.

After we began teaching pointing, I did try to find applications for it in my sessions. One very good application was using it to tell my pupil to sit or stand. Autistic people like specifics. If you say please stand by the table, this is too general. The table after all has four sides. Because of this autistic children tend to get manhandled a lot. You push and pull them about in a way you wouldn’t an NT child.

I found that by pointing at the exact spot, pointing so that I was physically touching it, my pupil responded and stood exactly where I had pointed and I got a smile from him too! If I’d pointed from a distance say two meters, or even one, he’s response would probably have been different. Distance pointing just isn’t specific enough for an autistic person. It’s the same as saying stand by the table.

I was in a supermarket recently and I couldn’t find the coconut milk. Eventually I went and asked a shop assistant. He took me back to the aisle I had been in and pointed. Of course I had no idea where he was pointing at. (We were actually stood at least four meters away from the cans of coconut milk.) Not wishing to look stupid I said thank you and choose a random shelf to look at. At which point he walked up to the correct shelf and showed me exactly where they were.

Apart from feeling daft, there was no real harm done. It is a good example though of why I prefer to work things out for myself rather than ask for help. Understanding other people is difficult. Getting the information you want out of them is not always easy. It did also make me think more about pointing. I know I should be drawing an invisible line to the indicated object. But as soon as I lose sight of the pointing hand, I am suddenly overwhelmed by everything in my field of vision and I lose the direction of the point. It’s strange.

Pointing sounds such an easy thing to do, and until recently I didn’t even know I wasn’t very good at it. I think previously I would have just cursed myself (I did a lot of that), or blamed the shop assistant for being lazy.

Autistic Disorganisation

During an annual review at a previous job, my team leader made me aware of my disorganisation. My desk was generally messy and I didn't seem to have any system for organising my work. I was surprised. Nobody had ever mentioned it before (I had been working about five years). Maybe people had thought it but never said anything.

The company had a library and she suggested I get out a book about organisation. I got a book out about right and left brain thinkers. After taking the tests in the book I came out as a predominantly right brain thinker, hence the messy desk. The left side of the brain is supposed to be responsible for logical thinking, language and detail. The right side of our brain is creative, it sees the bigger picture, it is visual. Left brain people (the majority of people in my office - it was an accountancy firm) tend to be very well organised and tidy. Right brain people are not.

Looking back I wish I'd thought more about what my team leader had said. The psychologists report on me says that many individuals with ASD suffer from additional dyspraxia-like symptoms, disorganisation being one example. Nothing I read about right brain thinkers suggested there might be another cause for my disorganisation though. The book after all was written for NT people.

The categorisation of people into left and right brain thinkers seems a gross generalisation. It didn't help me understand myself any better. I am logical and I am good at details, which should make me a left brain thinker, however I have problems with language. I am certainly creative as well (I went to art college), but I can't see the bigger picture and I have difficulty visualising. We used to do a lot of these exercises in a creative writing class I took, I never got much from them, usually I just saw darkness. Bizarrely I dream a lot, and in colour too (maybe there's a different part of the brain that?). From this you would assume I was a left brained person. I think my autism must have been distorted the results.

I have recently added that I have autism to my CV. It was difficult finding a way to include it without making myself sound unemployable. I put it under 'Skills and Strengths' near the top. I think I need to read up on dyspraxia as well, although probably not a good idea to put that in my CV.