Richard and Sue - Interview 10

So if you would just like to start by telling me your experience of having Asperger's then.

 

Richard: Well for most of my life I didn’t know what it was. Seven years ago.

Sue: Six or seven years ago now.

Richard: Well around seven years ago I was diagnosed. So the majority of my life I didn’t have Asperger's. I was just the way I am. And a friend of my wife read a newspaper article, showed it to my wife, who then persuaded me to consider the diagnosis and eventually I was diagnosed. I don’t know whether it was more your experience of living with me than it was now, because I mean that would be valid from beforehand anyway.

Sue: I thought it was important to get a diagnosis even though having read the article I was quite sure that that described Richard quite accurately. When I pressed my GP about it, he basically said, “Well if you think that is what it is, why do you need a diagnosis? Why does it have to be official?” Basically from my point of view it made quite a difference to me that it was a matter of living another 30 years with somebody with a disability or living another 30 years with somebody who apparently didn’t care. So I felt it was important to get that clarified really. So that I could find my way in the situation really, find a way to deal with the difficulties that we had been experiencing right through our marriage, up to that point.

Sue: Since the diagnosis yes. Since I have been able to say yes, he behaves like this …

Richard: Before that people would always think you were exaggerating?

Sue: People would think I was exaggerating or think I was just complaining, because it is very difficult for somebody outside of that sort of relationship to think, to understand – well I mean, I suppose what they would think, well if it is as bad that why is she still with him basically? You know if it upsets her that much why is she still there? And so I developed a … I just developed a shell round myself where I didn’t say anything about our relationship to people, even those people whom I considered friends, except for this particular friend who actually was in the home a lot with the children. She acted almost as a surrogate grandmother for the children. So she was in the home a lot so she knew what I was experiencing. She had seen it in action, you know.

 

But unless you see it in action, most people just can’t comprehend what it is that is going on. And it is almost, well it is, in a way it is an abusive relationship. Not a conscious one in the way that one would think, when you use that sort of term, but for example, I mean I am a health worker. I work in the health services and I could cringe. I did cringe when we had lectures about domestic abuse and things like that, you know, I just could feel myself withdrawing completely within myself because I could identify certain aspects of it. Not the physical abuse but the mental abuse of …

Richard: Abysmal neglect.

Sue: Yes, it is. Whereas when you talk about domestic abuse you tend to think that it is something conscious and systematic and … but I could very much identify with people in that situation.

Richard: This was one of the …

Sue: And that is another thing though too, in a church situation you don’t want to go up and start saying to people, well I feel as if I am in an abusive relationship.

Richard: I don’t think you would be allowed to say that.

Sue: Well it is not something that people would expect.

Richard: You didn’t say that.

Sue: That people expect from you. So for a lot of years I was living in a very unsupported situation. So again having the diagnosis was a help in that respect as well because then I could start saying, I am here with a disabled husband.

Sue: We approached the GP first or I did. And the GP was a bit reluctant about the whole thing. 

Richard: I remember we went to see him together. Had you seen him first?

Sue: Yes, I went first I think.

Richard: I remember that when we went together, that must have been the second time the subject was brought up, that I actually had to spell Asperger for him, so I knew that was a bad start. I knew we weren’t going to get anywhere.

Sue: He did eventually refer us to a see a psychiatrist for an assessment of Richard to see the psychiatrist but it was something like a six month waiting list and then when that eventually happened that consultation it was something like 45 minutes with this psychiatrist who basically just took a very skimpy sort of history.

Richard: Well basically he took the history of my depression. True I was depressed, but that wasn’t the point. I mean I was suffering from depression and I was getting antidepressants from the GP. That wasn’t what I wanted to see him about. But he took nearly all the time taking the history of my depression and then said he could see me for a second appointment in another three months.

Sue: So I mean at that point we felt that we weren’t going to get very far…

Richard: We weren’t going to get very far.

Sue:  … through the system. So we did some research, Richard did some research …

Richard: Yes. I found there are a number of good resources. Barb Kirby’s site is fairly central, Oasis and one of the links on there was to the Class Clinic in Cambridge, Dr Baron Cohen, a professor really …

Sue: Whatever he is now.

Richard: And I applied to him, and, you know, he said, yes it was quite possible for him to consider me for a diagnosis. Our GP wasn’t very keen….

Sue: Well he wasn’t keen until we pointed that that he could actually make an out of area referral to Cambridge and it wouldn’t actually cost him anything.

Richard: Because it’s….

Sue: Because it’s actually a charity, it is funded by a charity that particular clinic.

Richard: That improved his opinion. Although the GP had said, he had said to me, “Why do you need a diagnosis? There is no treatment.” But I mean I just backed my wife’s view on the diagnosis and for me, I also thought that I would rather be an Asperger than be wrong, weird, with no known cause. So that got us onto the system. They sent us some questionnaires, fairly lengthy questionnaires. We did those. They wanted to interview my parents, but it was far too late for that. They wanted to interview somebody who knew me as a child and with a lot of effort the best we could come up with was my younger sister. Obviously she is younger, but she had known me through part of her childhood.

Sue: And she had heard stories about you when you were a smaller child anyway.

Richard: And that was the best we could manage. So they had quite a long telephone interview with her. And then we went to Cambridge and it was a couple of hours or more wasn’t it?

Sue: Yes.

Richard: Two of us, two of them, an exten

Before you read this newspaper article did you know about Asperger's?

 

Sue:  Didn’t know about it as such no, but I mean I had been very aware, all through our marriage, that there was something, there was a lack of connection. We weren’t able to communicate in what to me was a meaningful way and that, in and of itself, caused a lot of problems and a lot of stresses. And I have even described it to friends, as it’s as if he is not wired properly. And it's, you know, in describing Richard’s behaviour to people, I would sometimes get the response of well it is just that men are different from women thing. Obviously to some extent that is true with Asperger's. But it is a much more extreme difference then people think of when they use that sort of language.

Richard: Or that is just a man on a bad day.

Sue:  Yes, but when people say that sort of thing, they have their own mental image of what they mean by that. But it still didn’t match up with what our experience was.

 

Can you give me some examples of the kinds of things you are talking about in terms of not being able to communicate.

Sue:  Richard could never recognize when I was upset about things. He couldn’t relate emotionally to what was going on in the home with me or with the children and if the emotional ambience became quite obvious he literally switched off, went completely blank and he was in that state. It didn’t matter what you said to him, it was as if he just never heard it and then he would go away and then he would re-appear a couple of hours later and behave as if absolutely nothing had been said. So I could have been very worked up about something, trying to get a point across that this is what had upset me or... this was why I was frustrated about something and it would be as if he had never heard anything of what I had said, and there would be no comeback on that at all. I understand now that that is a very autistic reaction; that they get to a certain point, they will overload and beyond that somebody with Asperger's or with an autistic condition just literally cannot hear anything that is being said. And that can be very difficult to cope with, to feel that you are just not being listened to and to get no feedback from what you are concerned about. What you are upset about.

Sue:  Yes, I mean on a number of occasions we tried various forms of counselling which hadn’t really had any effect at all because the general aim of most sort of relationship counselling is to try to get both sides to appreciate the other person’s point of view and that is something that Richard just couldn’t do. He couldn’t put himself into my shoes and see anything from my point of view.

Richard: I remember, the counsellor was saying, “You should take more account of your wife’s feelings.” But even then I think I knew the problem was that I didn’t know what her feelings were and that was why I wasn’t taking account of them, so it wasn’t helping. They were telling me to do something that I knew I wanted to do but I couldn’t.

Sue:  So for example, if I became upset and it became obvious in the home that I was upset, you know and I would eventually may be stomp upstairs and slam the bedroom door and just shut myself away to try and cool down over something. Richard would make remarks like, “Oh, she is sulking again.” And that was the only label he could put on it, which didn’t help anyway, because I didn’t f

He is very intelligent, he can give you a dictionary definition of a word but he himself, can’t define, can’t identify with that definition. So, for example, at one time I tried to talk to him, I said, “Do you understand what enthusiasm is?” So he can give a dictionary definition of enthusiasm and I said, “Well what does it mean for you?” And he would just go blank. So I tried to describe what it would mean for me, you know, enthusiasm you know, for example a child is enthusiastic when you say, and “We are going to the zoo tomorrow.” And difficult to settle the night before because they know they have got a trip the next day and they are very eager to get out the house into the car because they know that they are going to something that they enjoy. They are asking all the way there, “are we nearly there yet?” That is a bit silly, a bit of a silly phrase, because you know kids ask that all the time anyway. But you know what I mean? And you get there and one of them wants to go and see the monkeys first, and another one wants to go and see the tigers, and they are all means of expression enthusiasm for what you are doing. And when I explained this to Richard, I said but what about you, he said, “I have never felt that, I don’t know what that is.”

One thing I learned quite early on was about eye contact. Now I never used to do eye contact - Aspies don’t - because I never saw a need for it. When I read that most people do have a need for eye contact I trained myself to do it. Now I don’t necessarily get it right. I might give too much or too little, but I found I didn’t have any difficulty giving eye contact, whereas a lot of aspies find a lot of difficulty. Another thing was we read books about body language.

 

Richard: But I had got into some uncomfortable situations by giving entirely the wrong signals with body language and I studied the books. So I think now I don’t give entirely the wrong signals and I can read somebody else’s body language if I remember. I would have to remember and say, “Ah yes. I think that means such and such.” Rather than just forming an automatic impression the way that most people would. I don’t remember how long that took, that would have been the first year or two probably.

 

There was – things went a bit quiet again and more recently I felt that there was actually more I could do to develop myself. One of the…I started to look into this whole area of emotional contact again. The problem with emotional communication is in both directions or all directions. I can’t read my wife’s emotions, except on a very broad brush, happy, angry. I would have difficulty putting in the finesse of ways. And the same thing applies to my own. I don’t communicate own emotions usually because my emotions don’t communicate themselves to my mind. I know I have got emotions but I don’t explain them. And linked with that is the understanding that aspies don’t have empathy.

 

There has been quite a lot of debate on that, quite a lot on what is empathy anyway? That is still something of an open question. A definition has not really been agreed. But I came to the conclusion that it was not right for a husband and father not to have any empathy and that I would therefore work on learning to have empathy. If I can learn to read body language and to give body language, I mean I have to make an effort to do it, I decided that I could learn awareness of … awareness of emotions is one thing. I think empathy is another. Empathy, I understand, is to have feeling with somebody in their situation and that I believe is actually coming now. It looks like it is a much more difficult job but I certainly believe it is possible and I am developing that way which does lead to the conclusion that, or the assumption perhaps, some of the main factors of Aspergers can actually be overcome.

Richard: It never occurred to me. I suppose like most people I was the way I was and that was all I knew. And perhaps I hadn’t really considered what was portrayed in films and plays where obviously you do see a lot of emotion portrayed. That is what it is about. I just hadn’t, hadn’t considered it, as applying to myself. As a child I was very solitary. But I didn’t have friends and at the time I think my understanding of that was, I don’t have an interest in football, that loses me most of my friends, I still don’t have an interest in football which means I am not going to make friends at work. But that doesn’t bother me. And at the time, when I was a child I don’t think I ever thought what was cause and what was effect. You know, I was different from most of my age group in that I was a lot more interested in maths and physics and not at all interested in football and that made me different. I would rather sit and read then go and play a sport. That made me different. So if I didn’t have any friends, it might have just been because of that.

 

What about other family members did they view you as different do you think?

 

Richard: My father was almost certainly aspie as well. Too late to say now, but….

Sue: I think, too, Richard is very intelligent and he comes from a family that have regarded intelligence and educational attainment as very important. So in that respect he fulfilled their expectations of him. And they also were quite independently minded sort of people, so any idiosyncrasies wouldn’t necessarily be seen as such. They were quite acceptable, so you know the fact that…. I know from what his sister said, you know, that his mother did try to invite children into the home but would find that the children that were invited in would be downstairs playing with his toys and he would be upstairs in his bedroom reading. That sort of thing happened when he was a child.

 

But they didn’t seem to see that as a problem, in any way. Well I think they felt that as long as he was doing well, educationally, then socially there wasn’t going to necessarily be a problem. I mean his father as he says, we think looking back that his father certainly almost definitely had Asperger's as well. And he was very focused within his career and had got on quite well in many respects, but socially he was very lacking, and his mother tended to fill the gap really, which is then what I found I was doing in our relationship. I was trying to make up for the inadequacies socially which again was stressful. But we never actually got to the point when his parents were alive of ever being able to talk about these sorts of things with them.

Richard: I think that they came from a generation and a background where you don’t talk about that sort of thing.

Richard: I think that we tend to have the superior ability in concentrating on a subject, on a problem and sticking with it. And I think there is a number of employers could very well make use of that if they wanted to. Also what is sometimes seen as a disability in our deficiency in social interaction tends to mean that we don’t spend any time in office gossip which could seen as an advantage. The obsessive interest in detail could also very well be put to use. There are a number of jobs where it could be very valuable and even the lack of social interaction, there are quite a lot of jobs that are one person jobs.

 

I remember one of the aspie men on the forum, he works, he works for an electricity distribution company, not in this country and he sits in a control room with screens all around him and if anything goes wrong he tracks it down and then phones an engineer and says there is a problem at such and such a place. So that is all the interaction he has. Nearly all the time he is interacting with his computer screens and he complains that every year they come back and say that he is not a very team player. He says, “No that is why I chose that job.” Because he doesn’t need to be. So I think that with the right sort of environment we could be very effective.

 

I think those are the main ones really, that you can be very focused and you can cut off outside stimuli to enable you to be focused which obviously in some jobs that is quite a useful thing to be able to do. So it is matter of trying to find the positive side to the traits in that respect. You know I mean in a family that is a not very good trait that you can sit at a computer for six hours of an evening and not know who is in the house and who isn’t, is the other side of the coin.

You know, I have been on the internet and been in chat rooms and heard a lot of women complaining about their husbands who have got Asperger's and their behaviours and in many ways been quite thankful that he is not like that. You know, I think if you have a more extrovert sort of personality with Asperger's you would come over as somebody who is very dominating, very opinionated, nobody else can see things the way you can see them, but you are the one who is right and I have not met that sort of behaviour form Richard very much.

 

There are times when he is opinionated and he can’t understand anybody else’s point of view but he is not somebody who would… after I have spent say five years getting the garden looking right come home one day and decide he doesn’t like those rose bushes under the window and so he would dig them all up, simply because he doesn’t like them which is the sort of behaviour of have heard from women with Asperger's…. Having said that, he has manipulated the family quite a lot as much by his absence rather than his dominance. Does that make sense? In the sense of you know there are things that have to be done within a family. You have to make decisions. Things have to be done for different members of the family and if he will just not take part in that decision making or he won’t make himself available for doing this or doing that then myself or eventually as the children have got older, other members of the family have to shape their way of doing things in order to take up the slack and step in. And that certainly before we had the diagnosis, that was a big area, sort of the big bone of contention; that he wouldn’t make himself available in the way one would expect of a husband or a father in terms of making decisions or being interested in children’s education or being involved with holidays or all sorts of things like that. 

 

So it is good that he now wants to be involved to some extent in those sorts of things. I find myself, though, I do find myself stepping back a bit and thinking, right well let’s just see how far he can manage it. There is very much a wariness within me, that I have to over come myself, like, you know, in that I don’t want to throw myself wholeheartedly into saying, “Oh this is fantastic. Yes, you are doing really well,” because I have been disappointed so many times in the past. I have that within me that says, let’s just see how well he can manage this. Is he actually going to do what he says? And that is a problem that we have at the moment. I think Richard feels that I am not supporting him enough…

Richard: Yes.

Sue: … in what he expresses and what he says he wants to do.

Richard: I do feel that. But I do also recognize that there is a lot more work to be done and I have made a start, but it has got a long way to go and it does happen that I get tired and discouraged and give up on something. It is not a continuous upward climb. I do have setbacks. And that is the most difficult time. That is when you would be tempted to think, well this is not worth it.

Sue: Yes to some extent.

Sue: I think now that they are older and I can look at them as more mature, more independent people, I think it has had quite a profound impact on them actually. I mean for a lot of years I found I was struggling just too sort of hold myself together in an emotional sort of sense and not give in to depression because it is very difficult to live in the same house as somebody who appears not to notice whether you are there or not. Who doesn’t, of himself, interact with you. So that was quite difficult for me and I didn’t realise until, certainly until after we had got the diagnosis what effect that would have on the children.

 

You know a child whose father has died at least can think that there is a reason why they haven’t got a father who interacts with them but a child who lives in a home with a father present in the home but isn’t interacting has more to deal with I think. And certainly for the girls anyway I feel that it has made them quite needy, quite insecure in themselves, and they lack the confidence that I would have liked them to have. Now that they are grown up I can see that manifesting itself a bit. The boys have possibly not been as profoundly affected as the girls have. And again I think it depends on the individual’s temperament in the first place as to how well they can cope with those sorts of strains, you know, and different ones are more robust temperamentally anyway. They seem to have coped with it better, but some of them I think are more fragile then they otherwise would have been.

Sue: I think the children overall felt well what difference is that going to make having a label. It wasn’t going to change what they had already experienced, although since then, you know, with some of them I have been able to talk a bit more as to why their father has behaved in certain ways to help them to come to terms with it hopefully in as far as it has impinged on them. Helped to explain that this is how he is and that is why because there does build up a certain amount of resentment towards somebody who doesn’t seem to want to interact with you and children, just as wives do, have a certain expectation, you know. And when they are very small they don’t in one sense they think that what they have got is absolutely normal, but as they grow up and they start interacting with other children, they go to other homes, they see other families in action, they begin making comparisons and I think it is then that they start being aware of what they are missing out on to some extent. And can become resentful and think that their dad doesn’t do this or that as the others.

I came to the conclusion in fact that my treatment of the children was abuse. It wasn’t intentional and I never did anything bad. But I didn’t do anything good either. And that is neglect. Now of course I got the same from my parents, from both of them, so ours were well better off in that respect. But that was one of the main reasons why I wanted to heal some of the problems like the empathy and social contact. I can’t undo what has happened. But in what time I have got left and my children are alive, even if they are not still here, so I kind of still have a relationship with them, and to some extent I can make up for that and that is what I want to do.

Richard: There is a group of the National Autistic Society who meet three quarters to an hours drive away, which is reasonably local and I have been there a couple of times. But the meetings I have been to were speakers, talking about the work that is being done and I thought there was some of what they were talking about might be relevant, but not quite.

Sue: I think too, as with a lot of these conditions there is a spectrum. I mean they are called spectrum disorders anyway.

Richard: Yes.

Sue: And somebody like Richard who has got into his fifties and has managed to hold his own to some extent within society doesn’t have such obvious needs to address as somebody who is nineteen or twenty and has much more obvious needs that should be met to help them to find their place socially. To find a job that they can work at, for example, to find the support they need from people who don’t expect the personal interactions that they can’t give. That sort of thing, you know, I mean Richard can hold his own, for example, in a factual conversation. You know, he is intelligent, he has got his degrees, he has held down a job, just about all his working life albeit it in a field that is full of people with Asperger's [laughs]. Because you know, he can work better when he doesn’t have to work in a team situation so he is more focused within his own field. Youngsters who are coming up and having to find their way in that way are going to get a lot more attention in terms of support and the effort that is put in for them, rather than somebody who has basically managed.

 

Sue: I only did that for the first what eighteen months after the diagnosis and then I felt that I wasn’t really benefiting from being exposed to a lot of women complaining about their husbands basically, which is how I experienced it as a wife of somebody with Asperger's and it has been quite different for Richard.

Richard: There are, there are quite a number of forums to do with Asperger's. There is one very famous one which is full of women whinging about their husbands and that is what it is for. That might have been the one you found.

Sue: Well I don’t know, I mean I could identify with a lot of what these women were saying, but it didn’t give me any answers, you know, and for a lot of them the answer was, right I need to get out of this relationship. That wasn’t an answer for me so I just stopped it eventually.

Richard: I have been quite active in a forum for Asperger's and their partners. So it is not the wives whinging, it is both and there is quite frequently people, quite frequently women coming on, saying either I have just found that my husband, boyfriend is Asperger or I think my husband, boyfriend might be Asperger. Help! And the attitude of the forum is, you can make a go of it, it is hard work but you can. I found quite often that I can respond to a woman in that position saying, “Yes I know exactly why he does that and I can actually tell you why he does that because that is what I do and now I understand it.” And I think that is where the forum is doing a lot of good.

 

Richard: Yes.

 

 

Richard: Yes. I found quite a lot of help with just communicating with other Aspie’s and we are different because it is a spectrum. We are different people. We have something in common, the details are different. And quite often I can get to understand something, possibly by reading a report from somebody who is a lot more extreme in that particular aspect. So okay I am nothing like that extreme but now I know what you are getting at because I do have something of that and that does help with understanding.

Well I don’t think we would still be together if it wasn’t for our faith to put it bluntly. If it wasn’t for the fact that as a Christian I believe that when you marry somebody you are married for life. I would have copped out a long time ago if I hadn’t believed that. And I can well understand the breakdown of relationships when one partner has Asperger's because I can well understand the strain that that puts some people under because you go into a marriage and you have certain expectations. They are not demands, but they are just normal expectations of what you are going to gain from it and if those expectations don’t materialise then it is a big upheaval adjusting to that and finding your way to work round that.

 

I know it is something that not a lot of people have managed to do I believe. You know, I mean sometimes it is just very simple things that end up being the last straw. Things like it took quite a few years to convince Richard that he should bath more than once every three weeks for example and I still haven’t convinced him that when he has worn his trousers for three days he needs to put them in the wash not back on the hanger.

 

It is a completely different way of seeing things that isn’t amenable to what you perceive as logic. And you just have to find ways to work round those things sometimes. You think well…. But that is on top of the – well he just doesn’t listen to me anyway situations [laughs]. You know, it is not a matter of he doesn’t listen to me when I am upset so much as it is a constant ongoing, he just appears not to listen to me in the sense of hearing what I have to say and responding and interacting over it on anything. Well at times it certainly seems like that. So without believing that once I had married him, that was it, it was for life, I would have walked out. So I do believe that my faith in God and my place here in this marriage is one of the reasons why we are still together.