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Daniel and Margaret - Interview 54

Age at diagnosis: 11
Brief Outline: Daniel was diagnosed with Asperger syndrome when he was 11 years old. He does voluntary work one day a week and Margaret runs a support group for people with Asperger syndrome.
Background: Daniel and Margaret have two children aged 7 and 4. Ethnic background/nationality: White British.

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Daniel was diagnosed with Asperger syndrome when he was 11 years old. He is married to Margaret and they have two children, aged 7 and 4. Daniel needs a lot of reminders and forgets things very easily. While they spend all their time together, Margaret can feel left out because Daniel has a strong interest in music and can become wrapped up in this to the exclusion of anyone else around. Margaret describes how they will watch the same episodes of comedy programmes over and over again in order for her to spend time with Daniel.
 
Daniel took an overdose a few years ago and Margaret feels that she has to keep a close eye on how he is feeling which can cause tension between them. While Daniel says that he does not want to harm himself, when he is ill, he may feel a ‘tourette like’ compulsion to kill himself which is difficult to manage.     
 
Daniel thinks it is important to remember that people with AS are all very different. He has found that knowing about AS and spending time with other people with AS has helped him to become more aware and improved his theory of mind (his ability to empathise). He thinks there are a lot of good bits to AS which can be the bad bits too. For example he has very good hearing which is very useful with his music recordings, but it can make things like trips to the supermarket very difficult. He describes how his senses all seem to be linked so when he sees something he will smell something, or if he hears something he might see something and so he experiences a feeling of brain overload which can be frightening.
 
Margaret thinks that Daniel has learnt a lot of his responses to things and while it may appear that he is more empathetic, this is more of a learnt response than a true understanding. Both Margaret and Daniel think that people with AS can find life easier to manage as they grow older whether this is an outcome of following a particular diet or learning to manage sensory issues, but it is important to remember that the person still has AS.
 
Daniel enjoys composing and recording music while Margaret runs a support group for people with AS and arranges social events, music workshops and regular newsletters.

 

Daniel describes how he notices very little when he is concentrating on something and sometimes...

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Margaret' I think that is another thing I find very difficult to cope with. I don’t like being ignored. I find that very, very difficult. And Daniel does it a lot. But it upsets me more when it is the kids. If he is busy doing something, he is either on his computer or his guitar or he is writing a song or whatever and the kids want his attention, and they are asking him, and they are getting annoyed, and they are saying, “Dad…”  asking him to do something or whatever. And they come out to me and say, “He is not listening, he is ignoring me.” And I will send them back again and say, “Well tell him he has to listen.” And then I get more upset than they are. It really, really, upsets me that he doesn’t take notice of them when they want attention. I mean I know kids can’t have it all ways and can’t have everything that they want….
Daniel' But [name] has got the idea that if he comes up and punches me or something I will generally take notice…
Margaret' …because you shout at him. And tell him to go away.
Daniel' After a few minutes of him actually constantly punching me, I must admit, until I notice. But sometimes, you know, you can be  concentrating on something and unless I am listening out for things and unless I am actually consciously thinking oh they are going to be calling me soon, like if I am in the garage I won’t hear them, sort of thing. So unless I am constantly listening out for something firm, I don’t hear it kind of thing. [noise]  It is sort of I almost have to be everything consciously as well. It is like standing up and breathing, you know, things that everybody do automatically from the day they are born [laughs]. It is like if I am talking sometimes I just won’t breath in sort of thing, so for a few minutes, and then get really out of breath and, you know.
 

Margaret describes how Daniel has learnt some responses and he says things because he thinks it's...

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I think Daniel’s responses are something he has either heard or he has seen or he has picked up somewhere. Quite often Daniel will say things that I know I have said to him, and he will be repeating them to somebody else, perhaps in a different situation but it is like a learnt response and sometimes I think it is a case of he chooses to say that, because he thinks that is what he should say rather than it being a natural response. So the theory of mind issue can be quite confusing because although he seems to know what it is all about, in reality and in practice it is not quite that easy, and often I look at him, and we are having a discussion and I am thinking you don’t have a clue. You really do not know and he insists he does because if he saw it on paper he could work it out. If somebody read out the story, he knows the answer. But living it, and putting it into practice are totally two different things.
 

Daniel has learnt that the most important thing is to accept yourself as who you are.

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You said a bit about, you mentioned the theory of mind? Can you say a bit about that?

 

Daniel' That is quite funny actually... really the theory of mind. That sort of the, the way that has sort of improved is, actually being around people with Asperger's a lot, because when we spoke, I am aware that it has made me aware, of what the issues are for them because I have got, obviously, I have had those experiences, for myself  but then it is sort of understanding that those issues are worse for other people and everything and so it helps with that, because it sort of felt, I think the main thing is, accepting yourself  if, sort of it, with like anxiety and things. If you can’t accept yourself and feel sort of at ease with yourself, everybody else is not to be at ease [small laugh]. So it is sort of, it is sort of... I mean sort of I think it is quite linked with anxiety and things like that because it  confuses you which I suppose everything does, when every little thing that adds into it just confuses the issues with what is somebody else thinking, because in a sense if you never feel normal yourself, never feel like, well this is me, and that I am happy with it, then you can never really understand how other people feel, because most of the people have the same issues, even if they haven’t got Asperger's.
 
I mean, there is, there is so many issues in life and so many different things that go wrong and what have you, sort of shape how you are and sort of understanding that everybody is different, and understanding that... I suppose understanding that  because people have had these different experiences that it makes them different, and it means there is something in life, but it also means that, I mean if you sort of know somebody who has broken their leg or something and you have never broken you leg, but I mean I broke my shoulder recently, so it sort of, I know what it feels like to break a bone and everything so in a sense you know what it feels like. Although it is a completely different part of the body or what have you, so it is sort of being able to just accept, because if you haven’t been in a situation, there is no way you can put yourself in that situation. It is more about empathy then anything else. It is sort of more with theory of mind to me, it is more like how I would I feel if it was in that situation, because that is all it is really. So it is properly sort of…
 
Margaret' ...From my point of view the way I see it with Daniel and his theory of mind, is more a case of something he has learnt.  He can pass the theory of mind tests when somebody reads him out a scenario and says, “What will happen?”  Originally he didn’t understand the first one I told him.
 
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Daniel enjoys writing and recording music and writes songs with a friend who also has Asperger...

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Margaret' His music.
Daniel' Yes.
Margaret' Staying at home and either recording his music or writing it or something and it is something he tends to be a lot of on his own, only though he says that he wants somebody else to help him out. When you go and sit with him or try and work out what he is doing, there is no room for anybody else to be involved unless of course it is his friend. He has got another friend with Asperger's and they were really well together most of the time. They write songs together.
Daniel' Yes.
Margaret' For some reason that works. If anybody else is with...
Daniel' We are incompatible sometimes but yes….
Margaret' Most of the time you are.
Daniel' I have got this….
Margaret' Anybody else is sitting on the sidelines.
Daniel' We worked out this system [little lad coughs] if I say, he actually writes poetry and stuff, so we sort of write song lyrics together and what generally happens, he says, he will say a line and then I will sort of, I will take it on board and sort of, I will spew it out about five minutes later, it is like every word….
Margaret' As if it is yours.
Daniel' As if it its mine, yes. And he says, “Yes that is a good line,” you know. “I wish I had thought of it.” You know.
Margaret' It is the new Lennon and McCartney.
Daniel' Well he’s we used to have this old system, where it is like most of the time, I would just say, “Oh yes, that is interesting.” And that was like code for …
Margaret' We don’t really want that one. [both laugh]
Daniel' And so, we used to get oh that is interesting. Yes, but we had that quite a lot. We now, now it is a case of us trying trying sort of get above it. He comes up with all the ideas and then I make it make sense [laughs].
Margaret' Sometimes.
Daniel' And a bit of watching video.
Margaret' [laugh] He will.
 

Daniel describes having a 'global synaesthesia' in which the senses are all linked.

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Daniel' It is like I have got very good hearing, which means I can hear a lot of details and things, which really helps with my music. And constantly I have got rhythms going on in my head and stuff because there is Asperger's and stuff. 
Margaret' That drives me mad, because he is always tapping or moving his feet.
Daniel' That all used to help with the music and stuff which is really good as well. So it is sort of in a sense, like the really sensitive hearing, is horrible if I go, if we go to the supermarket or whatever. I mean I can control it now. But sometimes if I have got a headache of if like if I feel ill or anything in any way it is it is a case of it all goes out the window [laughs]
 
So sort of with sensitivity issues my idea of it is, it is like it is almost like global sinesthesia, so basically every single, every single sense is sort of linked to the other one so it is like if you smell something, you might see something or if you hear something, you might see something, or if you hear something you might smell something. You know, all those things which when you have got, when you are in such a busy place or something it is just like complete sort of brain overload which is, it can be really frightening, because it is sort of like being so good most of the time, it is like I am not used to it now. So when it does when I do off at the deep end [laughs] and have all these problems [child coughs] it is pretty scary because I can’t deal with it as well, because I am not used to it as much now. So it's quite scary with things like that.
 
Which I think really at least sort of 89% of the disability is those issues with sensitivities and things... But it is sort of... lost my track now [laughs] it has gone, yes. It will come back in a minute.
 
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Daniel does voluntary work for a charity one day a week and enjoys it.

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I work in [company] which is in [town], but it is actually like a national charity as well. And it’s a case of we do like an ebay charity shop. And I am working for somebody who is actually more disorganized than I am which is really bad because it is like I go in one week and I never know what I am going to do or whatever and it is like, it is like we have got these mountains of stuff. And I put… I am not very fast at doing it, so one of the, I am not very good with the quality of work, well it is quality and quantity of work isn’t very good. I go in for three or four hours and I might put three things on if I am lucky whereas most people would put like 20 or 30 things on. I mean I am only writing like a sentence, and most, and then a little paragraph underneath, which is copied and pasted. And I only do it and get three things done. But I do spend a lot of time talking because it is so interesting.
 

Margaret constantly worries about Daniel killing himself after he took an overdose a few years ago.

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Margeret'      Well yes. We have been together, we have been together nine years, but in January 2000 he took an overdose and he was living with me at the time. And I had gone out and he had taken the tablets while I was out in the middle of the afternoon, and from then on, it is almost obsessive me trying to make sure that everything is all right because it was very difficult to work out the reasons behind all that and what was involved. So I feel responsible for him.
I do feel responsible for him. So I always try and work out what he is thinking or try to see if I can work out what he is thinking and how things are going. But then we end up, we end up falling out because I do become too possessive of him, because I want to know exactly what he is doing and what he is thinking and I just have this fear that we might be back where we were then, seven and a half years ago and I don’t think I could cope with that.
Daniel'        I constantly have to tell her that I don’t want to kill myself and I don’t feel suicidal and stuff.
Margaret'      But a lot of the times in the seven years he says he has and he has demonstrated in a lot of various ways that he wants to harm himself and he forgets that. And that is an issue. He does forget a lot of things. And he will forget important things  and he will say, “Oh well,” you now, “Don’t fuss because I am not going to kill myself.” But then I’m thinking, well, what you were you doing two years ago? What were you doing six months ago? Whatever. Something that was quite dangerous and would physically harm him, all the ideas and thoughts that he has had. So even though he says he is not going to do it again, I am stuck with this thought that I am not sure he understands what he is actually doing when he is doing it.
Daniel'        One of the sort of main problems I have is if I am ill or anything like that, as in physically ill, I tend to get these sort of psychoses where I constantly think about harming myself and everything and I don’t want to do it. But it is like, it is  it is almost like a Tourettezian thing of I want to harm myself which is really strange. But, I know damn well I don’t want to do it sort of thing. But sometimes, because, if it lasts a long time, sometimes it does get to the point where I think well you know, life like, you know, it is like  me brain constantly telling me one thing and me heart or whatever other part is telling me something else. And eventually….it is almost a battle of wills between meself. It sounds a bit multiple personality. But yes.
 

Daniel and Margaret say that Daniel has learnt to argue back effectively and now holds his own...

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Margaret' Well I mean we have some fantastic arguments. Fantastic shouting matches. I don’t know what the neighbours think. I know what the kids think. [laughs] But we do, we fall out big time, and I mean it is always really verbal. I know it is. Screaming pitch from both of us. Not just me. [laughs] He is just as bad as I am.
Daniel' And I used not to be able to argue with her, and most couples, well in the last year or so I have improved slightly so...
Margaret' [laughs] It is not an achievement.
Daniel' I can almost hold me own ground now. Because it is just like well… You know.
Margaret' I don’t know, I think …
 
Daniel' She has this really good knack of she can have a massive argument with somebody and not swear once, and it is just….
Margaret' Unless it is you.
Daniel' And it is just, she doesn’t get personal or anything like that, she does not get….
Margaret' Unless it is you.
Daniel' Unless it is me.
Margaret' Unless it is him. And then it all comes out. Everything.
Daniel' But I have sort of, I have almost, the idea with the theory of mind, is because I have listened to her arguing so much, that I have almost learnt, I have almost learnt back what she is doing, and basically that’s …

Margaret' That’s how he can argue, because he knows.

Daniel' Basically, it's just like, it's basically I have learnt response from listening to her [laughs] argue with me and argue with other people and everything. So it is sort of

 
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Daniel thinks that people are able to manage their sensory sensitivities more effectively as they...

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In a general sense there is actually more high functioning people with Asperger's then there are people that are slightly lower functioning, because it is a case of when you get to an adult with Asperger's, you might have been quite lower functioning when you were a child but the reality is, is you do learn. It takes a lot of years but you do learn and more, the more people that are sort of adults with Asperger's that have problems it is more a case of, it is not the actually, it is a case of they have never actually found a way of coping with the sensory issues and so they never learn the rest of it which is the sort of, there is no, it is like, it is sort of like a beta blocker on progress kind of thing, which is only for certain people.
 
 
And there is a lot of people who have done things like diets and everything and my personal opinion on it, is to get sort of an adult with sensory issues, issues, and things and do gluten free diets and they have really bad sensory issues, and it makes the sensory issues almost go away, because they have found something that does it. It can be anything. Absolutely anything I think. I mean, sometimes, things like diet works well for more than one person and sometimes it is something else that will work. But I find that those people sort of get to like, what a person with Asperger's who sort of got rid of those, and whose families deal with those already earlier on.
 
They get to that level and all of a sudden a lot of people think they are cured and which in a sense they have been, because they have been cured of all sensory issues. Mostly. But it is more a case of actually, it is just like, it is just they have got rid of the sensory issues, it doesn’t mean that they don’t have Asperger's any more because they have still got the development delay and they have still got the, they have still got the bits with, you know, theory of mind, and everything else, because they are just… but the point is I think because with Asperger's being like a global sort of development delay, a learning delay, it is sort of, that is the bit that basically means that it takes a good ten years or fifteen years or twenty years to get right. By the time I am eighty I might be normal. I don’t know.
 
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Daniel has realised that people with Asperger syndrome are all different through meeting...

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Daniel' Yes something like that. But I had known for a quite a few years that I had Asperger's and I say that because it was like, it took so long to get a diagnosis and everything so obviously I realise now that I am sort of trying to think what it was like then. So I was sort of told, but I didn’t really understand it. And I never really understand it, until up until a few years ago when we started our own support group. …
Margaret' He still struggles with some bits of it now.
Daniel' The main thing is because I have met so many other people with Asperger's and I realise that actually …
Margaret' They are not like you. A lot.
Daniel' Not one of them is the same as me. And the thing is, is, you have got to remember just because somebody has got Asperger's doesn’t mean they have not had a different upbringing and not had, you know….
Margaret' Different experiences.
Daniel' Different experiences and don’t have their own, you know people with Asperger's still have a personality and nobody is the same whatsoever. Obviously some of the issues are the same but the actual varying degrees of what those are unbelievable [kiddie talking in background]. But yes, so I have learnt a lot about Asperger's because of meeting people ..And sort of …
Has it helped you …?
Daniel' It has helped, it has helped my own awareness of myself as well as what other people are feeling and everything. I think my theory of mind and things like that have improved a lot. And just sort of understanding and sort of trying to help people accept, sort of accept their disability because at the end of the day it is you. And to be honest with, if there was one of these sort of cures or anything else, .would you want it, because you wouldn’t be you would you? I mean if the could like ….
Daniel' … sort of very futuristic kind of idea of a cure would be to actually get rid of all the bad bits and keep the good bits. [laugh] Then yes, I would probably want to accept it but other than that I wouldn’t want to get rid of it, because I would lose a hell of a lot as well.
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