Mary - Interview 01b
More about me...
Mary worried about having a personality disorder and was relieved to be diagnosed with Asperger...
When I received the diagnosis I was very, very happy. Because it... I was really relieved. It was just so good to know that I wasn’t, I was not a psychopath [laughs], no I was, because, you know, I know I’m not but it’s kind of like, what other thing could I have if it wasn’t Asperger's? You know, because I was reading on the internet, I was kind of obsessing about any, you know; what could I have? I mean did I have a personality disorder? I mean like personality disorders. Like was I histrionic? Or something like that [laughs]. I don’t know. Just these personality disorders that make people very, you know, I was, I was scared that I might have a personality disorder. I didn’t want anyone to tell me that there was anything wrong with my personality. That would have been the most offensive thing ever, and I was really worried that people might think I had a personality disorder. I was worried I had a personality disorder. So I was going, really obsessing about what was wrong with me. And to have Asperger's Syndrome, because I don’t think for me, that’s not a problem at all because I, know you could say there’s a stigma attached to it, but I think it’s kind of … it’s not a personality disorder. So I was relieved. You see but it’s just kind of something you’re born with and it’s not like you’re mad or anything. It just, can make you a little bit different.
If Mary hadn't been diagnosed, she wouldn't be seeing a support worker who understood her.
Well to have, to be diagnosed and have a label of Asperger's, it just, well, if I didn’t have, if I didn’t, if I wasn’t diagnosed with Asperger's I wouldn’t be seeing a support worker who actually understands Asperger's. So, you know, just to be with people who understand you, I think is very important. And, I mean Asperger's syndrome is a sort of recognised disability, because obviously people with Asperger's are very, very, very different, like incredibly different. But it does have these kind of, it is basically a social disability, it means you find it hard to basically get on with people in a sort of, yes, to sort of relate to people. Just to kind of, I think having Asperger's can make you quite self absorbed and quite pre-occupied, quite introverted, which I don’t think is the same thing as shy. Just kind of thinking about yourself quite a lot of the time, kind of just obsessing, maybe that’s where all the obsessions come from. That’s why it’s sometimes hard to reach out to other people.
Mary stopped travelling after the London bombing attacks. Some of her phobias have lessened as...
So it’s really once I left school and when I was at university, and the OCD, it was OCD an obsession kind of thing, but it’s kind of more washing hands and because I get very extreme if there’s something on the news, and I immediately apply it to me, and I won’t, all these phobias started to develop so I stopped travelling, you know, after the London terrorist attacks. I stopped travelling because I thought, well if there’s a bomb on a train, sorry on a bus, it could happen on a train. So I just got really scared and just… And because I’m just phobic anyway, and when I was at school like with things like food technology, I took that very literally as well. So, just be, you know, obsessed with food hygiene to a kind of extreme extent, and just get it out of control. I think that just got more extreme.
And also when I started school I was really scared of the fire alarm, because I thought it meant the school was going to burn down. So I was screaming and screaming and refused to go to school for a while. So, and as I say I got really obsessed about the age of ten with washing my hands all the time, but yes, and when I started secondary school that actually disappeared strangely enough. And I don’t know why it was, maybe because when I first had a friend I felt more secure. I don’t know why.
Mary thinks some people with Asperger syndrome come across as shy but they aren't shy.
The school never, I mean in spite of the fact that I didn’t have any friends, despite the fact that I was disruptive in class, I had all these issues. I don’t think the school really knew the extent of them. The school didn’t know about the OCD problems, and so that was very much kept secret. And the school didn’t know about my extreme interests, because that was kept secret so…. Maybe the school just saw me as kind of quite a… I mean I was often called shy. Although I’m not shy, which is kind of rather strange because I’m not shy at all. I think it’s more the anxiety but it’s not related to shyness. It’s a different type of anxiety. Because I think many people with Asperger's might come across as shy, and some of them are shy, but that’s like a personality trait that is independent of whether someone has Asperger's or not, then all people with Asperger's are shy, but they might come across as shy.
Mary explains her synaesthesia.
Mary has been obsessive since the age of three or four. Her first obsession was about food and...
Kate Winslett was Mary's most extreme obsession and this lasted for eight years.
Autism can bring certain challenges and difficulties to life but it can also enrich your life in...
Yes, if someone had just been diagnosed with Asperger's I think I would try and tell them that it’s actually not a bad thing to have, because obviously have Asperger's does mean you do have certain challenges and life can be a bit difficult in certain areas. It’s not, you know, it’s not ideal, but it’s not the worst thing in life to have. It’s not like a disease. It’s not going to kill you. It can give you quite great, great, I mean it can, in many ways, it can make your life quite… it can actually enrich your life in quite a few ways. Like I mean if I didn’t have Asperger's I wouldn’t be so, I wouldn’t develop so extreme interests. It can make you see things in a very orderly way. I mean I don’t know how many other with Asperger's have this, but for me, I have like a sort of layout in my mind, like quite visual kind of thing, colour, for like days of the week and things, months of the year, it’s kind of quite synaesthetic in a sort of way. I’ve always had that, and I’ve always been quite pleased about having that. I like seeing things in order.
And I think well I’d say if I didn’t have Asperger's I probably wouldn’t be quite so obsessive. But the obsessions are kind of not all bad, because okay there’s the OCD side I think it all kind of mingles in with the extreme interests which can be a problem but at the same time they bring enjoyment as well. So it’s not like my life is really bad. I mean it could be a lot worse. So I don’t think having Asperger's is a really bad thing. I don’t like it when people say you suffer for something, say suffering from Asperger's that implies it’s a disease, that implies that your problems rooted within you when often you place barriers because that’s because the way people see you, because they don’t understand. So it’s more for another people than yourself, who can make your life bad, but I don’t see it really as a bad thing. It’s not like you’re in pain, it’s not like you have to take drugs or you’re going to die. You know. So I don’t think it’s that bad.
A support worker is helping Mary to overcome her fear of going to new places.
Mary is very keen to move out from her parent's home, but does not want to live in a residential...
Mary did some research after feeling that her diagnosis of OCD 'wasn't the full story'.
Well I was diagnosed with Asperger's Syndrome last year in 2009, March 2009. Basically I already suspected there was something different about me, because I grew up without really being able to make friends or properly socialise with people in the usual way.
So although I was at university the, and I could go to university I think, because it was kind of familiar, so I wasn’t scared about going to university or anything. It was just other things I was really scared of so… So my parents told me I must get, you know, must see a psychologist to get that counselling and I kind of reluctantly agreed, because I didn’t originally want to, because I didn’t want to be seen as, I just didn’t want to be seen as different. I wanted to fit in. I didn’t think I had anything wrong with me, and I was really very much on the defensive of anyone who suggested that. So it was kind of gradually that I realised that yes, there is something, that’s kind of different about me, and my parents are right. So then I eventually agreed to go and see a psychologist and get, you know, counselling. And then, originally I was diagnosed with OCD which wasn’t really much of surprise because I knew what that was, but then I knew that that wasn’t really the whole story.
The first psychiatrist Mary saw said that she interacted too well to have Asperger syndrome. The...
Mary has discovered that she really enjoys learning but didn't like the form of working at school.
Mary was called 'an enigma' at school because the teachers couldn't understand why she was so...
I mean when I was at primary school I did receive a statement, what is called a Statement of Special Educational Needs in year 6. But that was mainly listing things like discrepancies with verbal and performance IQ. So they did an IQ test, and the verbal one was high but the performance one was low. And they couldn’t work out why that was. So they called me an enigma, because they just didn’t know what it was, you know, what the reasons were, or the reasons why I was good in certain subjects and then not so good in others.
So I mean I was good, you know, in certain areas of English, like spelling and that sort of thing, and writing. But then with comprehension I wasn’t so good, I mean fiction. And I was really poor at maths as well. And also things like practical skills, visual, spatial skills were very low. I mean my ability in that area was very low. But I didn’t, as I say they didn’t actually diagnose me with anything then. So I was quite, I mean I’ve read the statement since, and I’m quite surprised why they didn’t, but I don’t think much was known about Asperger's back’s then.
Mary finds her OCD more debilitating than her anxiety and dislike of dealing with the public.
I would like to have a paid job. I don’t have a job, I did have a temporary job in February at the County Council. That came to an end and it’s difficult finding a job that appropriate for me, because I know I can’t deal with the public and I can’t do practical things and I get very stressed very easily, because it’s mainly the OCD. I would say the OCD in many ways is more debilitating in a sort of way, because although I find it hard to relate to people, the OCD has got, I mean it’s all the obsessions and you know, about dirt and stuff. I get very obsessed and have to wash hands all the time. It’s quite… So I am more under control.
But it wasn’t easy to get onto benefits. And then obviously we had a problem when I got the job, you know, the temporary job at the County Council, because I actually it was because I worked too many hours and got too much… you know, got paid too much. So you see we had a problem with the benefits then, and we had to go through the whole process again, and that’s very stressful.
And we were told that wouldn’t be a problem at the start so we were kind of, we felt a little bit cheated. We don’t want to go through that again because obviously I want to get off benefits and I want to get a proper job. But it goes, it’s a very difficulty, it’s a really difficult problem which that all the problems in relation to OCD and people and practical skills and extreme anxiety means that I’m very unpredictable and I often like, you know, I mean I know in voluntary work I often can’t go in because on some days I’m just too extreme. You can’t do that in a paid job, you would be just be a liability. You’d let people down, and obviously it’s just very, very difficult really. You know, you just, conflict that you’re really wanting to have a job and then having to work through all these barriers. So it’s quite hard. I think I’d just like to get in sort of gradually. I would hate to have a, I mean I wish I was in a sort of situation where you could actually have a job and your benefits were taken away gradually instead of suddenly taken away and then if you can’t deal with a job, you have to apply all over again and it’s just a stress, just …
Mary was afraid she might have a personality disorder. When she realised she might have Asperger...
Well [laughs] just before I got diagnosed, I was incredibly obsessed with Asperger's Syndrome. I read all the books, and I was just a kind of, because I knew I had it, I mean that was just confirmation, just reading about it. You know, made me more and more yes, yes, that’s me, that’s me. There’s no doubt about it. But it’s just also you know, you trying, there was still that sort of nagging doubt in mind that well I could have a personality disorder because some of the symptoms are quite similar to some personality disorders [laughs] and they have actually done research on this and they’ve shown that many people who’ve been diagnosed with some personality disorders like schizoid personality disorder, which has got nothing to do with schizophrenia but it’s just a personality disorder schizoid which kind of makes you, kind of socially, a bit socially aloof. Many people, and I think it was first, I can’t remember. It was some, it was a Russian person at the beginning of the 20th, 1920s I think, who first coined it, but it’s, because the symptoms are really similar to Asperger's so it’s possible that people who’ve been diagnosed with that in the past actually have Asperger's.
Mary attends a structured support group where they discuss emotions and talk about how they have...
Mary is getting more used to going out and about with the help of her support worker.
The support worker is very, very helpful. I see her every week, every Tuesday for four hours from nine till one. And that’s really about like getting out more, and, you know, we mainly go to cafes, because I like eating out at cafes and for a while I didn’t do that, because I was just scared, but now I’m getting more and more used to eating out, going to cafes which I really enjoy. So we could go to many cafes in [town name] now. And I go on the train. I travel quite a lot now. I mean there are places I can go to that I never used to go to. So… you know, I go to [town name], I go to [town name], I go, I’ve been to [town name]. So I’m getting increasingly used to going on the train.
Mary gets on better with people older or younger than her. She thinks this is because she is less...
As a child, Mary was very clingy and obsessive about friendships.
I had one friend in my peer group but that friendship only, only lasted, well I mean it kept on, it kept on stopping and starting, so we were friends for you know, like a few, you know, a few weeks and we would break up and then get back together again. And I also was very possessive and quite sort of clingy because I didn’t like it when anyone else would start talking to her. That really irritated me. So I think it’s more me, then her, who actually broke it up. So... and often when I wasn’t friends with her, then I’d play with a girl a few years younger than me, or I’d just basically be really annoying because I was just fed up with not having any friends or anything. So I just… I think I annoyed quite a few people. Just was quite childish; kind of running around, just being really stupid. I didn’t really have much self awareness, because I used to go up to people and just tap them on their backs and stuff and ask them really silly questions and just run off. And I think I’ve matured quite a lot since then.
I’m not interested in that any more. That sort of withered away. But that was all through adolescence was particularly extreme, and I mean, when I started secondary school, I actually made a friend on the first day. And I was really pleased, really happy, but that friendship didn’t last long at all. The girl told me that I was too clingy, you know, that followed her around too much. She said, “I don’t want to be friends with you anymore.” And I was really upset about that because I remember, you know, I saw her walking off with another girl. This was before she told me she didn’t want to be friends with me anymore, and I saw her walking with another girl and I was actually, and this was on a like residential in year seven, and I was actually, you know, I mean I remember actually sort of crying seeing her walk off with this other girl because I just didn’t want her talking to anyone else. If she was my friend I didn’t want her talking to anyone talking to anyone else at all. Then I just got very possessed with people, like obsessed with them.
So yes, and then I had another friendship, a brief friendship, with a girl who said, who offered to be best friends with me, but then that one also ended. She told me I didn’t speak enough. So then I thought okay so to make friends with people I have to speak a lot. So I started to speak all the time, and, just you know, I mean I made, there was another girl who I briefly had a friendship with, but then she started to move out into a group, and I couldn’t deal with groups. And sometimes she said, “You know you can come and, you can come and join the group, you know, come and join us.” And I did. But they were all talking and I didn’t know what to do, because they all were friends with one another.
Mary puts on an act to appear more confident than she is.
But I think it’s kind of... because Asperger's for me is, I mean, I’ve, you know, I’ve got all the symptoms of it and everything. It’s very subtle, so people like, you know, if I, people don’t always see that I’ve got it. And that is very, very difficult having to tell people, you know, and people say, ‘Oh you seem very confident’ and I think well may be I look confident, but I’m not actually confident inside. It’s just like a show, because I often have to put on an act. It’s like having to act to script, to like, I think you just kind of learn how to socialise. It’s something that you can learn, but I think in many ways it’s a bit like learning a foreign language, because if you go to a foreign country and you’re learning a language, you can get really, really fluent, but it’s still not like your mother tongue so it’s still difficult.
While they try to be helpful, Mary feels her parents don't really understand the problems she...
Yes, my parents. Well my parents, I think, they do try, yes, sometimes they’re not always very helpful, but I think my parents don’t always really understand all the time my problems. I mean they know, you know, they know all about my problems. It’s my parents how first, you know, kind of, you know, queried whether I, you know, thought that I might have Asperger's before I was even diagnosed. So my parents do know a lot about, a lot about my problems and stuff. But, but, yes, okay, I wouldn’t say they’re that clued up on how to deal with them all the time really.
Have you got any brothers or sisters?
Yes. I’ve got a younger brother whose 20, coming on 21 this year. He’s just finished university. He went to the same university as I did doing English. He hasn’t got Asperger's. He’s got a girlfriend. So he’s different to me in the sense he can relate to people more than I can. I mean I would say we do have similarities and I don’t know. I mean they often say well how is it caused. I do often wonder how is it caused. I think it’s probably genetic. I think more it’s the traits that are inherited and then some people just get them more extreme.