John - Interview 52
Age at interview: 65
Age at diagnosis: 62
Brief Outline: John, 65, was diagnosed with Asperger syndrome when he was 62. He had a series of jobs and started some university courses over the years but is now unemployed and fills up his days 'by wasting time'.
Background: John, a former croupier, lives on his own and is unemployed. Ethnic background/nationality: White British.
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John was pleased that the psychologist understood him and how 'it just fitted into place'.
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So what did you think when you actually received the diagnosis? Can you remember what you thought?
Well, relief! I thought that is it! When I first went over to the clinical psychologist he asked me a list of diagnostic questions. And [snaps fingers] somebody understands what I mean. Yes I do constantly misread people. I have got a habit, a long history of misreading people. Not knowing quite what people’s motives are, unless it is very obvious, if it is absolutely blindingly obvious.
You are doing research. You are a researcher. I am not. This is the roles, the roles are very clear. You know. It is when the roles… at work, at work and this person is a manager or this person is the pit boss or whatever you know, this person is the designer, but it just gets vague, because it is not clearly defined. But I, yes when I had to go back again the second time to see the clinical psychologist and he said, “Yes, you have certainly got Asperger's. In my opinion you have got Asperger syndrome.” Ho! at last. Somebody bloody understands, you know, and it just fitted into place.
John feels a childhood diagnosis would have changed his life.
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And after that I read. I don’t go crunching myself into books about it but from what I have read. I seem in many ways to be quite, I seem to have oh some, some at least of the characteristics that you would expect of someone with Asperger's. And then I began to feel, what about my age. I am not a child any more. Had I known years ago when I was 16 or 17, had somebody said me, “We think you are a bit special. We think you have got Asperger syndrome. Are you very good with languages?” Or, “Are you very good with detail? Do you collect things? Are you very good at collecting things? Collecting facts? Collecting, like a train spotty mind if you want to put it that way.”
And somebody younger, if that was assessed. If somebody younger was seen and assessed, screened and somebody would say well look don’t do anything drastic, we will help you to make the most of it, to make the most of your life. And you will live a profitable and productive life and we are not going to mollycoddle you, but we will be there to keep an eye on you from afar as it were, you know, to make sure you are not going to get yourself into serious difficulties and my life would have been completely different. And I would like that to happen to younger people now. I really mean it. I really would. I know it sounds a lot possibly, but I don’t think. I have thought about it. I mean, I said to you when you walked in here, before the camera was on, one of the things is, about this, people with Aspergers is we do pass for normal quite well.
If you see me walking down the street in City, or London, or Amsterdam, or anywhere like that, there is nothing obviously, physically about me, that you could say, well that person…. You could see someone who is profoundly autistic. Obvious that bloke is autistic really or any sort of physical disability obviously or even if someone is deaf, you can very often tell or... But because we seem to function quite well or appear to function quite well. We seem to dress normally. We are not particularly flash, but we are not particularly scruffy, but... people think we are, but I think what we do is we fool everybody. You know we seem to have got a habit of “passing for normal” - is the word. Its… but I wish I had known years ago
John describes how people with Asperger syndrome interpret things literally.
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There is a police officer in [City] who is trained to deal with people who are autistic because we, it is not likely to happen to me, but it is quite likely to happen to somebody else. And it is to do with this question of interpretation, of interpreting things literally.
If you ask me, “Do you hear voices?” Let me simplify that. If you said to me, “Do you hear voices?” I would understand what you meant. What you meant is do you have auditory hallucinations? Do you hear voices? Well no. But in fact that is not true because the truth of the matter is yes, I hear voices, I hear voices all the time. I hear your voice, I hear the bus driver’s voice. I hear the woman next door’s voice. I hear voices all the time. And somebody with Asperger's if asked do you hear voices, would truthfully answer, “Yes I hear voices”. “Do you hear voices when there is no one there?” A truthful answer is yes. There are voices on the radio, on the television, I hear records. Yes, all the time I hear voices of people who are not there all the time. That is the truthful answer.
I know what they mean. What they mean is, “do you have auditory hallucinations” to which the answer is “no”. But somebody, I could quite easily see how somebody with Asperger's would answer yes and not only in that situation, in another situation, a police situation for example. You might easily answer yes to a police officer which will land you in serious difficulties. I am sure it has landed people into serious difficulties in the past but all you are doing is answering the question truthfully. But while you are answering one question, the police are obviously asking you a different question.
John has always had great difficulty assessing 'good and bad faith in other people' which has...
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The diagnosis was all about being asked questions, which I have now got a diagnostic, there is a diagnostic questionnaire.
And there were two questions that stuck in my head, when the clinical psychologist asked me. One was, “Do you have difficulty assessing good and bad faith in other people?” Hm. “Every time.” That is exactly what I have done for years. I have done so for most of my life over a period, at work I have a great difficulty, not necessarily with the work, but with the people at work. If there were no people involved it would be fine. But [laughs] I can’t see when I am being set up or even exploited. It is not always, it is not apparent to me when I am just being exploited or I am being abused even, you know, verbally abused at work. It just confuses me because I can’t see why anybody would do that.
The last job I had I was working as a marketing manager for a graphic artist agency in [City]. Quite a busy, busy office, busy agency and I was supposed to be marketing manager, which meant with other things developing productive and profitable relationships with customers, with suppliers and so on. Looking back on it, I put up with abuse and sheer nastiness from a manager for a long, long time, that nobody should have been expected to put up with. And I didn’t know how to cope with it. I just don’t know how to handle it, because to me it is simply counter productive. I was trying to do my job to the best of my ability and that was counter productive.
Now the other question I remember that I was asked at the assessment was, “Do you often think you are doing the right and it turns out to be the wrong thing?” Absolutely, all the time and I have got mixed… in my life I have worked for all sorts of odd characters. I think I am doing my best, what I am actually doing is walking into a trap or being set up for something. I am somehow vulnerable to it. I just can’t see it. And I won’t say it has put me off work for ever, but it is, it hasn’t encouraged me back to work because it is very, very difficult. I mean this is, over serious, quite serious issues, you know.
John walks around and feels that 'everyone has 'got it' apart from me'.
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And I am just not. [laughs] I can’t see what, its, its... I was reminded of this the other day, I went, diversifying slightly, I went to a concert by a chap I know in [City], a singer/song writer. And he has made twelve alums on twelve different labels, everybody in the music business knows him. He’s opened for everybody. He is has opened for Bill Wyman. He sang for the Charlie Watts band. He has opened for Paul Jones and the Blues Band. He just recently opened for a [2 sec pause] for Gloria Gaynor. He has opened for everybody, he has made twelve records, twelve labels, cannot get a hit. He has written a song called ‘Everybody… everybody’s got it, everybody’s got it, everybody’s got it, but me.’ And he just doesn’t know how he can a hit.
Well I feel like that with life. It is as I am walking around, and everybody has got it, but me, because I have got Asperger's. You can say it sounds a bit silly, but it is absolutely true. And I have found this, with you know. It is as if we don’t see something. We don’t grasp something from an event. Something important. It is nothing to do with academia. It is not really to do with qualifications. I have always had difficult seeing the relationship between qualifications and employment. Or even well qualifications are not everything, when social status comes into it. No I would say that I am reasonably well presentable, I am I not, I mean I am not, I don’t sort of wander round particularly dishevelled or anything do I? But I just don’t understand it. I mean you are laughing, but I mean I just don’t understand. It is funny I suppose, but it is not actually so funny when are on the inside of it because I know I will go out of here now. I will go back home, like a lot of people I know with Asperger's, I have since found out, it’s very characteristic, cluttering. My house is unbelievable. Books, magazines, newspapers, mountains of stuff, stuff, stuff, stuff.
John says there is nothing constructive or structured about his life; he is just filling in time.
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What do you with your days now then?
Waste time. I feel that I am wasting time. Make things to do really. I make things to do. There is no structure in my life. There is no structure. I don’t have to do anything, you know. It is not laziness I mean people could think it is laziness but it is to do with... I walk around in a sort of state of muddle, muddlement, you know, I am very often muddled... It sort of paralyses you. I don’t know if there is a better way to put it.... it is a lack of clarity, lack of clarity of thought. It is like a lack of perspicacity in my thought even....
You know I manage to fill my days. I fill my days in bloody Tesco’s and wandering around and reading bits and not reading anything properly in depth but just reading bits of this and bits of that you know. As I said, I have got the French and German newspapers and that. But it is all bits here and bits there. It is not, there is nothing constructive about it. Nothing structured about it. Nothing, you know, it is just filling in time.
John describes himself as competent, efficient with a good eye for detail, but he can't 'multi...
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This sort of difficulty has persisted throughout my life, although at work, I have noticed, I always, I think, have been quite competent and quite efficient. I have noticed I have got a good idea for detail, which is very useful if you work in graphic art. I also noticed I have actually got a good memory unless it gets overloaded. What I can’t do is what people call multi-tasking. If you ask me to do one or two or three things I will do them properly and thoroughly. It will be perfect or as near perfect as I can get it. What I can’t do is start something, get half way through it, then you come bouncing in to me and say, “Oh will you ring so and so.” “Yes, I will.” And then you will come back in ten minutes, “Did you remember to..?” “No, no, I haven’t done so.” “Ring so and so.” And then I will forget what I am doing. I can’t jump from one thing to another. I can do one thing reasonably well at depth.
I will give you an example. I just bought in the middle of [City] today, I bought the French newspapers, ‘Liberation’ and I bought the Frankfurt paper ‘Frankfurter Allhmeine’. I will get home. I wouldn’t read the whole papers obviously. But I can pick an article in those. A feature on the the elections on Morocco, it is all over ‘Liberation’. But I can pick an article, and read, I’ll translate it, virtually on sight. I will do it virtually. I will have a dictionary, but I will probably do it virtually on sight.
And again, I can do the same thing with the Dutch, with the German newspaper. There was an article on the terrorist bombing in Frankfurt the other day, it was a terrorist arrest in Frankfurt. Again... I can sit down and read that virtually on sight. I can translate it virtually on sight. What I can’t do, is do that and listen to the radio or play music. I love music. You can’t listen to the music. I like the radio. But I can’t listen to the radio or watch television or do anything else at the same time. Do one thing accurately, you know, well thoroughly, whatever the word is. But I can’t hop from one thing to another which again I have since discovered is quite characteristic of people with Asperger's. But what will happen is, if I listen to music I will start translating my French article or whatever, and everything else goes out of my mind. I forget all about everything else... You once I …just things... like time will go out of my mind.
But of course when you are at work it is a different matter, because you are working virtually in somebody else’s time. But I tend to try to be thorough and diligent. All the things are supposed to be thorough and diligent, hard working, good at detail and all that, and you wouldn’t believe some of the things I have done for employers and very effectively. Whereas well they just either ignore me or they use me or they wait for me to make a mistake, waiting for me to do something that will enable them to attack me.
John became depressed when he stopped working and felt that everything was pointless.
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And I was, I was feeling very, very depressed at home and when I went to see the doctor, which was a while ago, the doctor, my GP he put me in touch with a social worker, which I had never had a social worker. My mother had had a social worker. I didn’t have social worker. The house was beginning to fall into disrepair. It is quite an old house. I know absolutely nothing about renovation grants or anything else. It was a completely alien world to me, anything like that. Anyway he [name] came round, the social worker. Well first I felt very guilty about having a social worker but he said “No it’s my job”, and that is what it is really, what is what he gets paid for doing. He got the house renovated and one or two other things done. While I, he was doing all this, he said, “Are you doing anything?” “No, no.” You know work wise.
He put me in touch with an outfit called [company] Designs in [City] and basically what they do is they help people with more or less serious mental disorders by training them in woodwork and office procedures and things like that. And whatever I have got, and I knew it at the time, it was long before I was diagnosed. I don’t have a learning disability. I have got people disability. I haven’t got learning disability at all.
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John finds organising his home difficult and notices that his thoughts wander around all over the...
There is a chap came over from [city] to see me, there is another research psychologist in the [university], a chap called name. He is quite a nice chap. He came over. He came to the house, walked in. First thing he said to me, “Do you have difficulty assessing, do you have difficulty knowing what to throw out what to keep?” Every time! I do because everything is somehow potentially useful. I am very reluctant to throw things away. I am a great recycler. I always keep boxes and bottles and things like that. But it is difficult to know what to keep and what to discard. Not just in a physical sense, but also in a sort of psychological sense. I notice my thoughts wander around all over the place. I think about mostly… unfocused thinking, my thoughts just wander around sometimes and don’t make sense... But how can you not think? I can’t just stop thinking. You know, you just can’t stop thinking really. I don’t know. How do you discard thought? How can you…? It is like I said earlier about words. I normally remember words very well. How can you forget a word you know?
John describes how he meets other people with Asperger syndrome every week at a pub with 'no...
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Do you read much about Asperger syndrome?
No, not a lot, no. I have read a bit. I have seen bits on the internet. There is a chap in [city] set up Aspergernauts. Have you heard of Aspergernauts? There are tons and tons of Asperger's websites isn’t there? Seemingly we get on very well on the internet. I notice that we get on well texting. I keep everybody’s numbers. I know [name]’s number and [name] and everybody’s numbers. And I mean we normally meet, if you are ever in [City] on a Thursday afternoon. At a pub called the [pub] in town. Oh we chose the [pub] purposely because it is an, it could have been made for Asperger's this pub. There is no music, no juke box, no football, no rowdy crowds. Just a very quiet pub where they brew their own beers. It is one of the few in [City]I think that actually brews its own beer. You don’t have to drink alcohol. I just have a Coco-Cola.
Friendly people work there. Some chap, there is a sea captain goes there. A bloke who is the master of one of the ships goes in. Everybody knows who we are. We are quite a big crowd and sit round a table and we meet every Thursday afternoon, from about 3 o’clock onwards, 3 o’clock until we move on, you know. As far as I know we are the only Asperger's group that meets that regularly. Everybody else seems to be… the one in Leeds I think they have difficulty keeping it together and there is one in Manchester. I think they have trouble keeping it together.
John was 'very good at English and Maths and pretty useless at everything else'.
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I was very good at English and French, pretty useless at everything, well mediocre at everything else. Maths, absolutely terrible. I was always very bad at maths, and I still am. And I think it is because you can’t actually tell whether you are right or wrong. If I write an essay or write a letter, or write a piece, I can tell whether the words are right or wrong. If you give me a column of figures to add up, just ask me to add them up, I can’t tell on sight whether they are right or wrong and it is something to do with that. It is not as people will say it is obvious. People say mathematics is logical. I can remember trying to do something in maths which was an awful thing. I think it was something to do with decimals or something that you sort of A + B brackets squared over H3T equals what is it? And there is a whole lot of x’s and x’s and As and Bs go on the blackboard and I can always remember the teacher said to me, “Because it is a negative we turn it all upside down.” What is logical about that? [laughs] You know. I just couldn’t, I don’t know, it just didn’t register with me at all.
On the other hand French and English I always liked the idea of English, and the fluency of it. The French was the same. I noticed at school I never liked sport and it is something to do with, I think it was George Orwell who said, “Football was a war, without bullets.” Wasn’t it? And it seems something to do with the conflict. It is the idea of confrontation, of physical confrontation. I don’t like being touched. I don’t like physical confrontation. I don’t like confrontation generally I think it is pretty fair to say.
John talks about how he has never been able to envisage the future and fifty years on, he feels...
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I remember when I won the school prize for French. I wasn’t the brainiest boy, very typical of me, school, typical of me now. Go through school, not outstanding, not brilliant, hated sport, didn’t like the contact, didn’t like cricket, didn’t like football. It is all this contact business. Fighting. I don’t like it. But we had a very good Latin teacher, Mr Perry, very nice man Mr Perry. And he got me a job in the school library which got me out of games. And I was in my element in the school library. I was just happy to have access to the books really. You know, it suited me fine there rather than play football. But in the fifth form when everyone gets a prize, I got the school prize for French because I was simply the best. I was the best in the class and probably best in the school, at French and I won the school prize for Endeavour. I am good at trying. Well that is what I have been doing all my life. You know, I am still the same person, who was good at French and good at trying.
And it has got me, where has it got me? You know, what am I? You know I am still wondering what to do. When you said to me how do you envisage the future, I mean I am still the same as I was when fifteen. I can’t imagine the future. I wouldn’t say I was stupid but there we are. Fifty years on [laughs]. Does any of that makes sense?