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Life on the Autism Spectrum

John X

Age at interview: 47
Age at diagnosis: 45
Brief Outline:

After having a lot of contact with mental health services over the years, John was diagnosed with mild Asperger syndrome aged 45. Previous employment has proved problematic for John and he feels employers should be more aware of Asperger syndrome.

Background:

John is single and an unemployed admin worker. Ethnic background/nationality: White mixed UK/Irish

More about me...

John describes having a lot of contact with mental health services over the years before being diagnosed with mild Asperger syndrome at the age of 45. John had gone back to his GP two years ago to ask if he could have treatment for his concentration problems and the GP made a fresh referral to psychiatric services who then diagnosed him. 
 
John has been unemployed for three years and thinks this is because he works at a slower pace than other people and the emphasis on team work and being sociable at work is problematic for him. He describes being very content to be on his own. John would like employers to be more aware of Asperger syndrome so they can understand employees better. 
 
John describes having a ‘tendency to obsessiveness’ and domestic concerns can dominate his life at times. He has a compulsion to hoard books and electrical equipment. He has also found it difficult to sustain a relationship, particularly with trying to establish rapport in the first place.
 
John has become involved in a local support group recently and enjoys interacting with other people with Asperger syndrome.
 

John was pleased to be diagnosed but was left with the same underlying problems in his life.

John was pleased to be diagnosed but was left with the same underlying problems in his life.

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And did this as well the diagnosis, did it give you support, or she give you support for your attention problems?
 
No, absolutely not, though. That’s the compounding thing that I’d gone there with this one thing in mind, thinking because that was to me what was creating the biggest problem, not only in employment, but I’d also tried to return to education. I tried to complete an access course and found that very difficult because of my concentration problems. Access to higher education that is. And no, obviously, you know, the NHS are working within the constraints of their resources. They can only offer you so much time and you know, they’ve got perhaps some people who are more serious than others, but you know, if they review your case on a periodic basis there’s only so much can be fitted into that interview and, things to do with my concentration were always getting pushed down the agenda and getting squeezed out. So no, no, the original problem that I’d gone there with ironically didn’t get addressed at all. No.
 

John has damaged the property he rents.

John has damaged the property he rents.

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But I think the biggest difficulty, in, in the domestic environment is the sort of irritability that you get as part of the Asperger's condition and obviously that can affect neighbours. It can affect even the fabric of the property so… but those are real, real difficulties and I find I currently live in a housing association property where it’s professionally managed and somehow the landlord copes with those difficulties. But I think in a private rented situation it would be very much more difficult.
 
And when you say that the irritability affects property …
 
Yes.
 
Can you give me an example of that?
 
Well yes, I mean literally, I mean I get, not trapped, but I do suffer from a certain degree of obsessional thinking about you know, various conflicts that I’ve had with people, and you know, if you keep mulling ideas not particularly productively and somehow that raises your, your hackles, then I can end up compulsively punching a wall, and that, you know, and damaging the plaster work, things, things of that kind which obviously need repairing you know, so, things on that scale.
 

John hoards electrical goods and books. He was surprised to find out that hoarding was linked to Asperger syndrome.

John hoards electrical goods and books. He was surprised to find out that hoarding was linked to Asperger syndrome.

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I continue to apply for white collar jobs. I mean I think, obviously the fact that you’ve not been working recently and the fact that the most recent job is one from which you didn’t pass the probation period. That’s not something counts in favour of you as an applicant. So, but, that provides a difficulty. And also a tendency to obsessiveness means that sometimes you get bogged down in sorting out other areas of your life and you know, there are times for months on end when I haven’t looked for work. I mean I’ve been through something of a development in my housing situation, where my flat was being refurbished and I’d been moved out to a temporary so called decamp flat, and that has taken me about a year to go through all that process, which other people would have done much more swiftly, I’m sure. 

 

And what about the hoarding why do you think it’s curious that your psychiatrist does include hoarding under the umbrella of…

Well, well because I mean the reason I think it’s curious, if I read you know, literature aimed at the sufferer, I mean, it predominately talks about the social functioning etc. And I would see hoarding as more connected with OCD and I don’t have diagnosis of OCD. I have a diagnosis of quote obsessional symptoms. But my psychiatrist says that, you know, if there were any attention deficit problems which he doesn’t accept and the obsessional symptoms which he does accept. He lumps all, both of those areas under the Asperger's… 

I was very much taken by surprise and I wasn’t aware that Asperger's was considered to, you know, contain these other components. I mean I do understand now that it contains components to do with irritability and frustration, but no I was very much taken by surprise when he first said that the, any obsessional symptoms are part of, under the umbrella of Asperger's. Yes, that took me by surprise.

And what do you hoard?

Well okay, books for one thing, sometimes items of electrical equipment, computer equipment. But books is a major thing. I would say there, they are the major things yes.

 

 

John has concentration problems that have been eased with antidepressants but he would like further help.

John has concentration problems that have been eased with antidepressants but he would like further help.

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What do you think, what could help you do you think?
 
Well I think they’ve helped me in part by, by altering the medication that’s assisting with my depressions and that has by tackling the depression they’ve improved the concentration a bit, but I think, myself, that looking at things like, you know, attention deficit disorder in adults, I mean which is, it was long thought that it was a childhood problem only. But I understand that there’s some psychological work done in Australia, where it’s been particularly, you know, people have come to the understanding that it does persist into adulthood, you know, not with the kind of hyperactive symptoms that you might see in children. But I would think that some of the potential treatments for that and there are drugs that are given for attention deficit. There are, you know, the mild amphetamines like Ritilin, things that are like mild stimulants, the mild amphetamines that are used, things to treat attention deficit. I would think could very well assist with my mental functioning there. But the psychiatric opinion that I’ve come across locally is to say is to not know about attention deficit as distinct from hyperactivity. And that their thinking if you’re not displaying symptoms of physical hyperactivity, you can’t really be suffering from attention deficit problems, and I think they are mistaken on that, but that’s, that’s the opinion they’ve, they’ve come to. And it’s very hard to know where to go if your own psychiatrist is disagreeing with it, I’m not saying that’s the end of the road, but it’s hard to know as an individual patient to know where to go for further assistance really.
 
In terms of you’re saying about your concentration?
 
Yes.
 
What is it exactly that, I mean can you describe to me what it is the problem you have concentrating?
 
Yes. I think it’s more than one problem there. I think it’s on one level it’s thinking can be slower than the average person. And there’s also distractibility, the business of being distracted by other events and other environmental factors. As well as a sort of obsessional approach to things that, that otherwise slows you down. So I think it’s, you know, I know you want to discuss employment situation later, but you know, if you’re working in an office situation and you are much slower than the average person at doing the work that almost inevitability undermines your position as far as the employers concerned. 
 

John finds his difficulties socialising are magnified when he is with women.

John finds his difficulties socialising are magnified when he is with women.

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Do you anticipate have a relationship in the future?
 
Yes, probably, yes, yes. I mean I think there’s only really been one serious relationship down the years, you know, which in itself only lasted about six to seven months. You know, so it’s a very difficult area.
 
What’s difficult about that?
 
Well that’s difficult to put your finger on really. I mean I think it’s a communication difficulty that you have so… well that again is just very, very pervasive in the field of relationships. I mean it, I mean you know, the fact that you’ve got an understanding problem on a social level, I mean it is perhaps, it is perhaps magnified when you’re dealing with a woman, because I think women are more communicative, more social if you like. And if you’re considerably less communicative, less understanding of communicative issues than the average man, you know, that’s pushing you out to the fringes of the spectrum really, so it’s very difficult to establish a rapport in the first place really. You know, that is the main problem I think.
 

John's landlord can cope with the impact his irritability has had on his home.

John's landlord can cope with the impact his irritability has had on his home.

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So you live independently?
 
Yes, I do, yes. Yes. I’ve lived independently for years, yes. 
 
And that’s fine is it?
 
Well I wouldn’t say it’s fine. I mean I’m well adjusted to it, but it’s I mean, I think the, the biggest single problem is an organisational thing which is, I mean you can lump that into Asperger's, if you like, that’s what my psychiatrist does. He says that the you know, the components of my condition to do with concentration. To do with obsessional thinking, to do with organising things, he sees them as all part of Asperger's rather than any other distinct condition. So organising things in the home I find difficult. I tend to start a lot of things and not complete them for a long time. And you know, hoarding things in the home environment is difficult and again my psychiatrist sees that as part of the Asperger's Syndrome although I find that slightly curious. 
 
But I think the biggest difficulty, in the domestic environment is the sort of irritability that you get as part of the Asperger's condition and obviously that can affect neighbours, you know, it can affect even the fabric of the property so… but those are real, real difficulties and I find I currently live in a housing association property where it’s professionally managed and somehow the landlord copes with those difficulties. But I think in a private rented situation it would be very much more difficult.
 
And when you say that the irritability affects property …
 
Yes.
 
Can you give me an example of that?
 
Well yes. I mean literally I mean I get not trapped, but, you know, I do suffer from a certain degree of obsessional thinking about you know, various conflicts that I’ve had with people, and you know, if you keep mulling ideas not particularly productively and somehow that raises your, your hackles, then you know, I can end up compulsively punching a wall, and that, you know, and damaging the plaster work, things of that kind. You know, which obviously need repairing you know, so, you know, things on that scale.
 

John was on the verge of a diagnosis of schizophrenia as a teenager.

John was on the verge of a diagnosis of schizophrenia as a teenager.

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I mean it’s not actually that long ago, I’ve been diagnosed as an adult only a few years ago, by a local psychiatrist here working in the NHS, the diagnosis being mild Asperger's Syndrome. And, not a diagnosis that surprised me, I was perhaps surprised that the psychiatrist picked up on it. But you know, a diagnosis really that I’d almost concluded myself beforehand that that was a condition that I did suffer from, so not surprised. It’s just really an official confirmation of something that I understood in my own mind to be the case already. But it’s literally only, only within the past few years that a diagnosis has actually come.
 
Yes, and I mean speaking to somebody who’s had you know, a fair bit of contact with mental health services over the years, you know, I’ve found myself in the past being apparently on the verge of a false diagnosis of schizophrenia, this is going way back into my later teenager years. So, you know, it’s the advance in understanding within the psychiatric profession, you know, of Asperger's Syndrome that’s you know, given the correct diagnosis now where they were really going down a completely separate path, and a wrong path in the past.
 
What was it about that you were like at that point that, that made them think you may have schizophrenia?
 
That’s hard to judge, I mean maybe my sort of vagueness at the time. Maybe my apparent fixity of thought. I mean I can’t think it was anything that substantial. I mean I think they really were barking up the wrong tree as far as I could see. Obviously I was quite socially withdrawn, maybe as an interviewee to them, you know, I was not very clear about things. I think they really were barking up the wrong tree completely. And I was, was quite alarmed at the time, you know, obviously that that was in their thinking. They never did say that I was… you know, they never did come to a firm diagnosis, but that was their thinking. You know, so and I discovered that a) talking to a psychiatry social worker, and b) you know, eventually getting hold of my medical records some years later. But I can’t think that they were working on anything particularly substantial at all, and I think they were completely you know, going down the wrong pathway and a GP of mine said that was quite common at the time was to view people with Asperger's as though they were schizophrenic. But it’s quite concerning that they could potentially make, or would be going in the direction of making such a blunder.
 

John's dislike of social interaction and his obsessional focus have led to difficulties in the workplace. He is unsure about whether to disclose his autism in interviews.

John's dislike of social interaction and his obsessional focus have led to difficulties in the workplace. He is unsure about whether to disclose his autism in interviews.

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Okay, we can talk about employment now, I just wondered have you had difficulties in sustaining employment?
 
Yes, absolutely, yes, yes. Repeatedly really. I mean particularly in doing office jobs. I mean there would be other things that you could do where you might say it wouldn’t interfere at all, but yes, and I think this comes from more than one, there’s more than one facet of the problem that impinges on you in the work place. There’s as we were discussing earlier, there’s the social interaction and employers very much like their staff all to be getting on with each other and to be actively socialising is something that is sometimes encouraged. And it seems if you’re not involved in that, somehow, somehow you’re sometimes not seen as part of a team, but also if you productivity is affected. If you work more slowly, perhaps more methodically but somewhat obsessively and your productivity is low, then employers aren’t, aren’t going to look favourably on that either. So there’s more than one facet of the condition that negatively impacts on me in the workplace and I’ve found, I’ve found, I mean I’ve worked in the public sector for six years from the mid 1980s to the early 1990s and in the end, was dismissed from that job on grounds of inefficiency. You know, and that is, that is a repeated experience.
 
Have you had support now that you’ve got the diagnosis, has that changed your experience of employment?
 
No. I can’t say that it has. I mean, I think, I mean there’s a difficult tactical issue about whether or not you disclose your condition to an employer. I mean think increasingly you’re asked when you apply for a job you know, do you suffer from a disability? Increasingly job applicants are being asked that. It’s a difficult call I think for the individual to know whether to answer positively to that question or no. And if you do answer in the affirmative, ‘Yes, I suffer from mild Asperger's’, you know, it doesn’t necessarily mean that the employers then leap in to give you a lot of help. You know, often they view that negatively, because of their understanding of the condition or whatever. No I can’t say that I’ve been given help by employers and I mean neither by psychiatric services. I mean the, the sole source of help I’ve had is from a local charitable organisation set up to help people across the autism spectrum. That is really the sole source of help. I mean the I mean what psychiatric services tend to do with you is to refine medication that you’re being given, but I can’t think of any, any of the particular medications that I’m on, particularly being aimed at the Asperger's. It’s mainly aimed at other conditions.
 

John thinks that raising awareness of autism among employers would help.

John thinks that raising awareness of autism among employers would help.

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Well that’s quite a broad question. I mean I’m not an expert in job design or anything of that kind. I think, I think one of the main things that would help would be for somebody to explain the condition properly to an employer, so that, you know, when, when you as an individual are behaving in a certain way that you’re driven to behave in, that, that, somehow that’s explained to them, that it’s, you know, it’s just a facet of the condition and isn’t anything more serious. And, that, that’s one of the main things. And I suppose the other thing is you know, as I suffer with Asperger's I find I’m quite good at absorbing written instructions but, but when pragmatically local managers are trying to juggle competing demands and they want to not necessarily abide strictly by written instructions but to just get the productivity up, that, that you know, to, to explain that to me, rather than me sitting away thinking well I’m doing fine because I’m following the written instructions. I think those, those kind of interpretive pieces of assistance would also be useful. 

John's problems with attention have not received the support he would have liked.

John's problems with attention have not received the support he would have liked.

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And did this as well the diagnosis did it give you support, or she give you support for your attention problems?
 
No. Absolutely not, though. That’s the compounding thing that I’d gone there with this one thing in mind, thinking because that was to me what was creating the biggest problem, not only in employment, but I’d also tried to return to education. I tried to complete an access course and found that very difficult because of my concentration problems, access to higher education that is. And no, obviously, you know, the NHS are working within the constraints of their resources. They can only offer you so much time and you know, they’ve got perhaps some people who are more serious than others, but, you know, if they review your case on a periodic basis there’s only so much can be fitted into that interview and, things to do with my concentration were always getting pushed down the agenda and getting squeezed out. So no, no, the original problem that I’d gone there with ironically didn’t get addressed at all. No.
 

John is content to be on his own but that is 'unacceptable by wider society'.

John is content to be on his own but that is 'unacceptable by wider society'.

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Well you know, there is this tendency to, or contentedness if you like, you know, you to be happy on your own, you know, without, without a great deal of social inter… social interaction. And you know, while you as an individual may not have a great deal of problem with that, that is something that, somehow is seen to be unacceptable by wide society. You know, it’s something that other people find….I mean I think, I mean just to give the example of working, you know, in an office situation. That somehow to be sociable with your colleagues is kind of expected and with modern management techniques in offices like so called team working, it almost undermines your ability to be considered to be working as part of a team if you’re not also socialising with people in the pub on a Friday lunchtime. That kind of thing and I’ve found it very difficult to sustain in jobs where this, this element of whether or not you’re socialising with people seems to come into it. That’s just one example. 

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