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Neil and Catherine - Interview 55

Brief Outline: Catherine, 27, was diagnosed with Asperger syndrome when she was 23. She works part time as a volunteer gardener.
Background: Neil and Catherine live together. Ethnic background/nationality: White British.

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Catherine was diagnosed with Asperger syndrome when she was 23 years old after years of seeing doctors and psychiatrists and being told that she had depression and social phobia. Asperger syndrome was suggested to her while she was on an online forum and after doing a lot of research, she went back to the psychiatrist she had been seeing and presented her case. He referred her to an autism centre where she was diagnosed.
 
Catherine found school difficult. She describes herself as a shy kid without any friends and her mother remembers her walking around with the dinner ladies at lunchtime. She was very bright and loved English although she could not stand having to read aloud in class.
 
When she got to around 14, Catherine became very depressed and spent long periods in her room. She started to see a counsellor when she was 16 and felt suicidal. She was sent for various therapies such as CBT and group therapy but they all made her feel worse. She did an NVQ in administration but found the work placement impossible because she found it so difficult to interact with people and answer phones. After having a few cleaning jobs, she worked at a stately home in the office for six years. This was helped by her being the only person in the office, her mother worked at the same place and the boss was very understanding. She was worked as a volunteer gardener in a wildlife garden for the past three years.  
 
Catherine and Neil were pen pals for a few years before they met up and eventually moved in together. Neil’s brother has AS and Neil was diagnosed with bipolar earlier this year and so he is familiar with some of the characteristics. Neil has helped Catherine to learn to socialise more easily but she still has difficulties in talking to people she does not know. Both Neil and Catherine acknowledge that it is difficult for Catherine to know where to draw the line between trying to be more sociable while also knowing her limits. They have compromised on various aspects of their everyday lives, such as the lighting and noise levels at home and restricting friends from dropping in unexpectedly.
 
They describe themselves as ‘geeky bids’ who enjoy staying at home, knitting, reading and drinking tea. Neil describes how he was drawn to Catherine’s enthusiasm, childlike qualities, honesty and lack of pretensions. Catherine feels that while there are positives to having AS, it is sad that people are unable to get past the disability to be able to appreciate the abilities that many people with AS have.

 

Someone online suggested Catherine may have Asperger syndrome after years of seeing doctors and...

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When did you find out you have got Asperger's?
 It was about three or four years ago I think. I was 23. Was it? hm. Yes. I was about 23 anyway. I am 27 now so. Yes, I mean just sort of after many years of kind of seeing psychiatrists, doctors, nobody really knowing what it was that I had. Just sort of being told I had depression. I had social phobia. Anxiety. All these things, but not really kind of getting to the bottom of the problem. Every time I went to see someone they didn’t kind of… They couldn’t give me a reason why I was feeling like that, you know, if you are depressed, yes, okay, I am depressed, but why am I depressed? You know, why, why do I feel like this? It is not like…. I mean I got bullied at school but I didn’t feel like it was enough to explain why I felt like I did.
 
And it just happened that I was talking to someone online, and they suggested to me ‘have you heard of Asperger's?’ And I thought, well, yes, actually I have because I had seen a programme on telly, Luke Jackson and his family. I had seen the documentary about their family and at the time, which, you know, was a couple of years before this, I had sort of thought I really relate to a lot of this, but I haven’t got autism. You know, I was going to my Mum, you know, what, “I can relate to a lot of it. But I haven’t got autism have I?” You know. But then, so after speaking to this person, you know, who said “Oh it sounds like you should look into it.” You know. “If you are, if you feel like that. You know, you should look into it.”
So me and my Mum basically went to the library, ransacked the library for all the books we could find found the Tony Attwood ‘Guide for Parents and Professionals’ or whatever it is. Found Luke Jackson’s book, read them, and just basically burst into tears and went, “Oh my God, this is what I have got.” 
 
Went back to the counsellor who I was seeing at the time, who was not that good. Suggested Asperger's. He said, “No I don’t think you have got it.” So we just went into all the great detail of why I had got it, and he said, “Okay,” referred me back to the psychiatrist that I had seen previously, who went, “Oh my God, yes, why didn’t I pick up on it?” Apologised profusely for sending me to all manner of group therapies and things which just made me even worse. Referred me to Cambridge who then diagnosed me basically. 
 

Catherine was worried before getting the diagnosis but mostly she felt relief at no longer having...

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I knew about it, because I had actually read up about it. I mean, before I went for the diagnosis in [town] me and my Mum kind of got as many books as we could, looked up on line, everything we could about it. Just read loads and loads about it.   And I filled in the diagnostic, you know the questions the DSM-IV? Maybe. And you know, sort of worked out, basically, yes, I had definitely got it before I had gone for the diagnosis. So yes. I sort of knew about it. But I think right before the diagnosis I sort of started feeling a bit. Oh god what if I have got it? I mean, ah that is it. That is it. I have got it. I have got Asperger's. I have got autism. Oh my god kind of thing. But, mostly it was a relief. It was just a big thank god I know what I have got.
 
You know, I don’t have to keep seeing these stupid doctors that don’t know what they are talking about and keep trying to make me do things that aren’t helping at all. Being on all these pills that don’t even work. I mean I have been on so many antidepressants in my life and not a single one of them has done a single thing to help me. Apart from the one I am on now which oddly seems to be working. But yes, I mean it was just, you know, and I told you, I have got Asperger's.
 

Catherine could not bear to speak in front of other people and describes the fear she experiences...

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And basically I have hardly talked to anybody that is here. I just kind of go in. Get my tools, go down the garden, get gardening, because I love gardening and it makes me feel you know, relaxed, and I love doing it. But nobody that is there knows me, you know, it is like they don’t even my name and I have been there for years and they are sort of like, “Oh are you new?” And it is like, “No. I have been here for years but you won’t know me, you know.”   But, you know, say if, and there is usually a lot of young people about. They go out on tasks, doing you know conservational projects and things. But if I walk in, and they are all in there I have to walk back out again. If I got to get, you know, a cup of something in the canteen bit, and there is loads of people in there, I just head down, out the door, I can’t. I just can’t. It is like fear. It just… I just can’t cope with it. My head just goes… crazy and I have to get out of there. I don’t know if that is Asperger's or that is social phobia or…
 

When she was first at school, Catherine had no friends apart from her cousin.

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Yes. I mean school was just really bad for me, because I mean I was the shy kid.  I didn’t sort of have friends, I mean say primary school, I just felt really left out, and I didn’t really have any friends and my Mum just remembers me talking to the dinner ladies, going round the playground with the dinner ladies and things and I sort of… I remember just playing on my own.  You know, there was this thing called the island  in my school, which was just this raised bit that had trees and things on it and I just used sit there and pick about with the trees and things.
 
And I did have one friend who was my sort of cousin, who, you know, who I had sort of known since I was baby basically  and we used to play about together. But other than that, I just sort of didn’t really understand, or I didn’t really sort of know. I was just into reading. I just used to read all the time, and I didn’t really kind of, you know at my old primary school, I didn’t really sort of have any friends or anything, but I was, you know really bright. I was kind of like top of the class with reading and everything, you know, it got to the stage where I had read all the books in the school, and had to actually go back and start reading the basic books again, because I had read all of the top, the top level books and things.  
 
And you know, I got bullied I got sort of picked on a lot, for being shy, I guess, for wearing glasses. That was always a big thing. I got called four eyes. And I guess because I was such an easy target, because I was so shy, I didn’t really have any friends and I was just all little and geeky and you know
 

Catherine and Neil describe the problems Catherine has with sounds and lights distracting her...

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Catherine' I think it is just good that we know now what we have both got, or what I have got because before it was just really difficult for someone to understand why you can’t deal with certain situations, why noises freak you out, why lights freak you out. Why just people in general, you know, it is not, you know, it is really hard for people who don’t know about it to understand how hard it is. I mean I would say a lot of people that we know, don’t really understand the extent of it. You know, they know that I have got problems with people, and I have got Asperger's but if they haven’t read into it loads, then they don’t really know, you know, why I can’t do certain things or why certain things, you know, really freak out or, you know, so I mean I have sensory problems mostly to do with noises or say if I am trying to talk to someone or trying to concentrate on something. I can’t have other noise. I can’t listen to music and do something else as well which …
Neil' Yes, but we just have to come to a compromise like okay shall I turn this down for a bit, or you know I am going to go in the other room, or, so it is not just say me just sitting in silence all the time because you can’t handle it.
Catherine' Otherwise he would be there with like the telly and stereo…
Neil' Yes.
Catherine' And reading and on the computer at the same time. And I am just like owwwwww ha ha …. [laughs]
Neil' … because obviously you have got to, you know I am not just going to just sit there with loads of things on just out of spite but at the same time…
Catherine' We have our own rooms quite understandably. I have my room, he has his room which we totally need. You know, it is like otherwise we would go insane. Yes, but I mean there is things like light as well. I can’t bear bright lights. You know, I have a real sensitivity to light, like electric light and I just cannot bear being under bright lights, so all the lights are really dim, but he hates being in dim light so, oh there is just this crazy situation of like trying to work out who goes where, where the light is.
Neil' It is, you know.
Catherine' We have to have uplighters in the main room, so that bright light isn’t shining right on me, and it has got like a dimmer switch so you can sort of change the lighting system. [both laugh] Yes. It is a bit crazy in our house really.
 
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Catherine describes the difficulties she has had in work.

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 And I did do a cleaning job in a hotel, a chamber maid type thing, which was all right for a bit, because you just kind of cleaning rooms basically. But it came to problems when there was another girl working alongside me, and I couldn’t really sort of talk to her or anything and say things like, “Well you have to knock on the room,” and you know talk to the person who was in the room. “Can I clean your room?” I really couldn’t do it, and I sort of ended up having to leave there, because it was getting too much for me.
 
I did another cleaning job. My Dad was the caretaker in a school and he said, “Well why don’t you come and work with me, you know, that should be all right”. Just cleaning in a room. Cleaning the classrooms, you know after the kids had gone home. So I thought yes, you know, that sounds doable with my Dad there and everything. So I did that for a bit. But then it started getting so that the teachers were staying late in their classrooms after school and doing you know, marking or whatever and I really felt awkward, like they were just watching me, and judging me. And if they talked to me, I felt really bad and stuff. So I had to leave there as well [chuckles].
 
I have got a lot of jobs that I have just left for this reason. And I had one job where I lasted a day. It was in a factory where you pick and pack the items. You know just to have a list. And I thought oh that sounds all right. A list of things and go and get them off the shelf, put them on trolley, oh right you have got to talk to the people on the fork lift trucks to get the higher up things. And all the girls were all like flirting with them, and talking with them, and I just couldn’t speak them or anything. So I just walked out after I had been there for about four hours and just ran home and felt awful.
 
 I mean I have had a successful job. I had..because my Mum is a gardener at a stately home and they needed someone in the office and the boss already knew about all my problems. He is sort of like a family friend by this point because my Mum has been working there for ten years now. And he just needed someone in the office to do basic sort of filing, typing, that kind of thing, you know and it turned out as a lot research, historical research because it is a stately home there is all the research, historical stuff there which I really enjoyed because I am in to history and stuff. So it was really good, because I was just in an office, which was basically nineteenth century, no eighteenth century dovecote. I am the only person in the office, so I don’t have to talk to anyone. And so it kind of worked out because my boss was hardly ever there and it got to the stage where he would just kind of come in in the morning and say ‘do this’ and I just got on with it. And you know it was just part time, a couple of days a week. And my Mum was there if I needed anything. 
 
So yes, I think I was there for about six years because it was something I could cope with and I think the only way I could ever have a job would be if it was something like that. I mean there were a few situations that got bad because where I was working was above the exhibition and people would come into the exhibition and sometimes they would shout up the stairs to me and I would just be cowering under the desk, hiding, because I just couldn’t bear talking to them. 
 
And some situations where one of the other people who sometimes worked for him wanted me to come into a meeting with her, and I went, but I just had a massive panic attack and my Mum had to like come and sort me out and stuff. But I mean for the most part it was good, but it kind of got a bit, it was only p
 

Catherine describes her experiences of doing an NVQ.

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... [laughs] You go to college one day a week, and then you have work placement. And I was thinking, you know, I could try and do that. I had a work placement in the local council and basically it killed me.   I was all right the bit at college because it wasn’t a normal college. It was more a sort of... It was vocational college. So it was just one to one with the tutor. There wasn’t actually a classroom of students or anything. So I could deal with that, because one to one isn’t necessarily my problem, if it is something like, you know, if I am being tutored one to one, you know, it is okay. 
 
But the placement at the council was just like hell for me because I just couldn’t cope with the office situation. I couldn’t cope with answering the phone. When I had to answer the phone, and then I had to say to the boss “It’s for you.” And then they would say, “Who is it?” And by that point I had actually forgotten who it was, because I cannot speak on the phone. It is one of my big problems. I can’t speak on the phone if there is other people in the room or if there is other noise because I can’t hear them both at the same time. I have real problems with sensory, with sounds and things distracting me. So she just used to look at me like I was shit and like I was worth nothing and I couldn’t really do anything other than filing or really simple sort of things that didn’t involve interaction with other people. Panic attacks all the time. I had to keep running off to the toilets and getting loads of water from the machine to calm down.
 
And one time I just completely snapped, went mad, started just shouting at everyone and just couldn’t cope with it and had to have a talking to from the boss, and I just had to say to the people at my college, “I can’t do it. I just can’t do it.” And I just had to finish off the rest of my NVQ at the college. Just kind of. They said, “Right,” you know, because it as an NVQ so it as like, “Oh you need to be able to do this.” So I would just sort of do it at the college without anyone around and stuff. You know, send a fax, and just do that, and do a bit of filing, and just do that. And so I got an NVQ out of at the end. But I think that is what sort of drove us to realise that I had big problems. I couldn’t deal with work. I couldn’t, you know, do anything in a normal work situation.
 

Catherine wrote a letter to her mum saying she wanted to kill herself and had years of therapy...

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And, you know, and it was just things like obviously I couldn’t  ask questions in class. I couldn’t put my head up, because I just couldn’t speak in front of people, didn’t, you know, and it was just sort of… And just during, say when I got to about fourteen, fifteen, I just, that is when sort of I started getting really, really depressed  and I would just spend all my time when I was at home, you know, sitting in my room. I didn’t sort of, you know I didn’t have any friends, I didn’t go out. Outside of school, I didn’t see anyone, you know.  And  when I was about sixteen was when I started seeing counsellor and things.
 
I went to the doctor and you know, ii just remember I just wrote my Mum a letter saying, you know, I feel really bad and really depressed and I don’t know what to do and I really wanted to kill myself. I just kept thinking about it, you know.  That was kind of when it all started getting more serious, oh we have to take you to the doctor and all this, and [intake of breath] but yes, I mean, school, it wasn’t a very good experience for me. Maybe the last couple of years were a bit better, because I really made friends with the person who was my cousin, who I was friends with in primary school, because she was in my class again. So I kind of got on with her, you know, she was kind of another person who was getting bullied and she wore glasses and stuff. So we had that in common, you know. And she liked reading, so we used to go into the library at lunch times and read and stuff.
 
But  and I liked art lessons, because I was with her in art lessons. So that was good, because you just kind of got to sit about and draw stuff, you know.
 
But yes, so …
Then what did you do when you left school because you obviously got together?
Yes.  When I mean when I left school, it was kind of basically everybody I did know all went off and went to college and started going out and drinking and doing things that normal young people do, which.. I just kind of was in my room for years. I just did, you know, I was just like living in my room and really depressed and I was seeing all manner of doctors, counsellors, psychiatrists, CBT, everything, but obviously because they didn’t know what I had, it wasn’t helping one bit. I got sent to group therapy, which made me feel insane because sitting in a room of people all staring at you, with all these bright lights shining on you. I felt really faint and I couldn’t speak and I kept telling them. I don’t think I can do this and they kept saying, “Oh come back because you don’t you are not helping yourself.” So you know my Mum had to take me there and I came out and I just said to her, “I would rather walk under a bus then ever go in there again.” So she just said, “No you are not going in there again.” You know, because it just made me feel ill.  
 
And yes, so I was just sort of a succession of counsellors, different antidepressants and things and getting panic attacks every time I was anywhere in public, had to talk to anyone hence me not going anywhere really.  So yes, I mean that was just sort of from when I left school.
 

Catherine and Neil were pen pals for a few years before they moved in together.

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Catherine' We were pen pals [laughs]. We wrote to each other for what was it, about a year?
Neil' Hm.
Catherine' Before we got together. And I mean Neil’s got a lot of problems as well. At the time, undiagnosed. But, you know, we kind of related to each other, because we had a lot of similar problems. And his brother has got Asperger's. So he knew. Although when we first started writing we didn’t know I had it. But now, you know, he kind of knows a lot about how to deal with it and stuff.   But yes, we met up. I came up here to visit, because I am from [county] originally. Came up to [town] and yes, we just got together basically from writing to each other and, yes, we have been together, for what, four years?
Neil' About four years.
 

Catherine and Neil talk about how they support each other and they have both learnt a lot through...

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Catherine' No, we, at this time we were still actually writing to each other. We kind of just, for the first few years that we were together, we were still writing. We just kind of visited each other which was actually quite good, because I mean Neil as we know now has got bipolar and I have got Asperger's. And it was just a big thing of like we both need our own space a lot. I couldn’t conceive of living with anyone because it just made me feel ill. I mean with living with my own Mum and Dad I actually had to get a council place on my own on medical reasons because I was starting to feel that I couldn’t live with my Mum and Dad any more. Even though I love them and everything, I get on fine with them. I just can’t bear being around people. So for a bit, I actually lived on my own. So we were still writing to each other. Visiting each other a couple of times a month, you know, but not actually living together, but you know, we were still together.
Neil' Hm. It helped in that way, because it kind of help like, you know, we weren’t both defined at that moment so we didn’t know what was going on, so when we actually met up each other, it was kind of we didn’t have to see that side of each other.
Catherine' Hm.
Neil' And, but then obviously when you moved closer, then it is kind of okay, I start, right, okay, I get it now and seeing different sides to it.
Catherine' Yes. I mean when you are around someone more, you start to see … what they are like, you know.
Neil' But then it kind of, you know, then you know how to deal with it, because you have got like a label on it, and you can go okay this person’s got this. They are acting like this. This is what I am going to do for them rather than they are acting like this. Why? What am I am going to do? Oh go away or, you know, then, or you get frustrated really or whatever. I mean it is same with like, you know just, Cathy has got to deal with me as well.
Catherine' Yes.
Neil' So it is kind of, you know, we are both just equally as bad, so it is not a case of you know I have got to deal with you all the time.
Catherine' I mean in some respects it is a nightmare. In some respects it is good because we can help each other, because even though we have got different things, there are a lot of crossovers, a lot of similarities, because at one point it was thought that he had Asperger's because his brother has got it and there’s a lot of traits that are the same. But then you know looking into it more. It is, you know, and finally he has got diagnosed as well in the last year, which is amazing. But yes, I think, I mean say up until a point, it was only my Mum who knew really what I was like, because she had seen me in distress. She had seen me through everything I did. You know, she pretty much had to go everywhere with me. She had to go to appointments with me. She had to accompany me places like, because I couldn’t sort of go anywhere where I hadn’t been before on my own, because I would just get lost or something, you know. 
And so she was the only one who really knew before Neil what I was like because my Dad, we have a strong suspicion that my Dad has got Asperger's as well and it was a big problem, sort of growing up with my Dad because he is so distant and sort of he basically used to lock himself in the garden shed all the time and it was this thing where both me and my sister went through a period where we just hated my Dad because we thought he didn’t love us. We thought that he didn’t care. We basically felt like we had just been brought up by my Mum because my Dad was so not there. He was just in the co
 

Catherine has learnt how to 'sit about with people' from Neil and is amazed she can now do that.

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Catherine' Yes. I mean basically I had loads of pen pals. They were the only friends that I had, so, you know, I kind of, I was scared, but I felt more comfortable about meeting him in person, because obviously we knew everything about each other from writing to each other, but I was just terribly phobic of, I mean I couldn’t kind of go into a restaurant. I couldn’t, I couldn’t hang with people. Like now, it is only through Neil that I have learnt how to just have friends and sit about with people, and talk to people, hang out with people. How to do anything socially basically is through Neil helping me, because I just, I was a wreck before. I didn’t have any friends, I didn’t go out the house. You know, the only people I saw were my Mum and Dad basically. And that was it.
 
Neil' Because yes, you know, the first, you know, times we met each other and were say like hanging out with my friends and just, there is just so much difference like how she was then and now. Just even things like eating in front of other people, or talking to people or just, it is completely different. And obviously I didn’t know it was Asperger's. I just thought, oh I can understand somebody being   anxious, because I have got a lot of anxiety problems, and I was just thinking, oh well, okay, then we will, you know, helping you sort that out, because that was the only way I could relate to it.
 

Catherine thought things would get better at secondary school but the teasing carried on.

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And then when I moved up to secondary school, I thought, oh you know, it will be good, because, you know, there won’t be the same people and so they won’t know that I am the one that gets teased. But it just carried on basically, you know, with more people. Just kind of same reasons really. I was just really painfully shy, and for the first three years at least, I didn’t really have any friends. And I just used to kind of… I mean like the only things I really liked were English lessons, but I hated it when we had to read out of the books, you know, I just couldn’t do it.
 

Catherine recalls growing up with her dad.

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And so she was the only one who really knew before Neil what I was like because my Dad, we have a strong suspicion that my Dad has got Asperger's as well and it was a big problem, sort of growing up with my Dad because he is so distant and sort of he basically used to lock himself in the garden shed all the time and it was this thing where both me and my sister went through a period where we just hated my Dad because we thought he didn’t love us. We thought that he didn’t care. We basically felt like we had just been brought up by my Mum because my Dad was so not there. He was just in the corner, you know, off in his own little world and ever since finding out that I have got Asperger's, it is pretty damned obvious that my Dad has got it as well or he has certainly got a hell of a lot of traits of it, because you know… and so obviously I have probably gotten it from him, because he just fits the bill, totally. So it is pretty much my Mum that has had to deal with it. You know, all of her life. So yes.
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