'Disability' is not all black, 'normality' is not all white.

In the last post (here) I described problems I used to have relating to people, understanding emotions, and controlling obsessions. Do I have Asperger’s Syndrome? No. Did I have it? Probably not, but I certainly experienced aspects of the problems. It’s been a long journey.

Along the way I’ve got to know two people diagnosed as Aspergers. One I found very difficult to like, which is unusual. The other is a great guy, and in his own field brilliant. Studying sixth form Maths he grew impatient waiting for the teacher to cover calculus so he invented his own version. Not bad considering most students find it puzzling even when it’s explained.

This has got me thinking about how we view someone who is different, whether they have Asperger’s or some other disability. I’d love to have your comments, especially if you or someone you know has been diagnosed with Aspergers Syndrome.

Aspergers is good as well as bad

It’s thought people like Newton and Einstein may well have had Asperger’s Syndrome. Their obsessively focused approach to their work over many years suggests something very different going on in their heads from how most people function. They were limited because they had little control over their determination, but they were freed to concentrate. We need people like that!

Beware of believing the label

Everyone is different. Each person diagnosed with Asperger’s Syndrome is unique. The diagnosis can be helpful in that it alerts you to the general nature of the situation, and the kinds of unusual ways of thinking and behaving you can expect. It can be damaging if you think that tells you much of real importance about the person.

Aspergers is not a fixed condition

Some experts have stated there’s no ‘cure’. Two things wrong with that. People with the syndrome are not sick, they’re different, so it’s inaccurate to speak of ‘curing’ them. However there may be aspects of their unique condition which they would value having help modifying. Actually that’s true of all of us. I have changed a great deal over the decades. Relationships are much easier now. I am beginning to understand other people. I have more control over my obsessions – you could argue blogging has become an obsession, but what I’m now doing is harnessing my ability to work for a very long time at one narrow project in order to achieve some valid and realistic objectives. I’m no longer a slave to an obsession, but I can still benefit.

Whether or not something is a disability depends on context

Being unable to recognise most emotions in other people is a serious disadvantage in a society where most people don’t have that problem. Many aspects of life are about communication. It’s worth working at. On the other hand being able to recognise such emotions in others but not caring is a major problem to the people around. For some reason we don’t classify that as a disability. Maybe it’s too common.

The trick is not to use subjective beliefs about how a human being should think but look at each person as a unique and valuable individual. We must stop locking people into boxes. We must stop requiring people to match the label some ‘expert’ has given them.

This, by the way, is a central point of the book I’m writing with Adam Warner. I have chronic depression, he has Cerebral Palsy. We both hate being labelled, and we both reject traditional limitations on what we can achieve.

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Looking back with bemused affection. On the back of this photo someone has written 'April 1961'

Recently I was rooting through the attic and came across some old photos. This one I showed Jenny and she assumed I must be one of the kids, but was puzzled. She didn’t think any of them looked like me – and she’s good at recognising faces in old photos. She handed me back the picture and I asked how carefully she’d examined the kid sitting down at the right. “What kid sitting down?”

This photo captures something of what I remember. The kid is 11. Why is he seated when everyone else is standing for the photo? Why is he separate from the group? What is he thinking about? Does he have Asperger’s Syndrome (a disability not invented yet in 1961) ? Do the other kid’s dislike him? I have no idea about any of that even though it’s me.

I do remember the camp. It was just a few days somewhere in the Quantock Hills south west of Bristol (UK). I had a great time. You can tell from the photo, can’t you. No? Well can you guess I spent a lot of time inside my own head and had difficulty relating to other people? Wow, amazing, you can. The next year I was back and this time my best friend Robert came as well. Actually I don’t think I had other real friends. I wasn’t good at friends. Robert looked after me well. If you’re old enough you may remember the Jennings and Darbishire books by Anthony Buckeridge (still in print). Robert was Jennings.

Did I spend so much time withdrawn from everyone because it was a way to cope? My Dad was having major problems with chronic depression, and this had a knock-on effect for me from, as I recall, about age 4 or 5. No physical abuse, but plenty of emotional – some of it inadvertently from my Mum who was having a much worse time of it but still loved Dad. I do know being withdrawn did help me cope. It was a bit like playing a computer game now when I’m very depressed; it let me move into a different world.

School was good. Relationships were puzzling. I really had no idea how most other kids thought, but I liked having them around. They were kind of cardboard cutouts floating past. They were company on the rare occasions I needed it. They could be useful. It would be many years before I learnt to look at life through someone else’s eyes.

I went through a series of obsessions. The first main one was for some reason with American superhero comics – you know, stuff like Superman, Batman and Spiderman. I bought everything I could get hold of, and sulked furiously during the periods when nothing new was on the racks. Wish I’d kept my collection – would have been worth a lot now

Later I got into running and that stuck with me for years. I had the totally unrealistic belief that I was destined to be an international athlete and win gold at the Olympics. In my twenties part of me was realistic, but a separate part still followed that obsession. Not normal at that age. Then I moved on to rock climbing which became pretty much central for two decades. I thoroughly enjoyed all of these activities, and running and climbing brought me into more social situations which was important. I wouldn’t change having done them. I would change the weird obsessive nature of my interest and have been a bit more chilled but there you go.

I’m not a qualified psychologist so I’m not competent to diagnose mental problems. You need to have worked with experts over a long period for that. However for many years I did more or less satisfy the diagnostic criteria for Asperger’s Syndrome. That link is to a Wikipedia article which when I looked did not go into much detail, but I’ve studied the DSM-IV criteria and worked with some people who have been classified as Aspergers. I’ve found I understand them pretty well, as if from the inside. Aspergers is a cluster of symptoms which frequently crop up together, but people are not as simple as the manuals imply. If you almost fit but ‘fail’ on one item then technically you’ve not got the problem – yet clearly you have problems which could probably do with similar help.

In the next post are some points about Aspergers which are relevant to how we view all apparent disabilities.

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