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Gail sees autism as a difference in the same way that race and sexuality are different.
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I think, in a way it’s a difference. It’s a difference like being black or like being gay. People don’t have to have a diagnosis to tell them that they’re gay. They can, you know, they can understand that about themselves. So to me it’s sort of like that. Because it’s not something where you get a blood test and it’s like oh yes, your blood is this type of blood, it’s defined by characteristics, and people can define themselves, you know, on the Myers Briggs things, I am an ENTP, or whatever, you know, they don’t need a diagnosis to tell them that. So if it’s purely for self-knowledge I do not see the necessity for diagnosis. Diagnosis is only necessary if you need some support which I needed at college. So I mean I, the fact that I’ve, because lots of people have said to me that’s wonderful, you’ve got a diagnosis, do you feel you know yourself better now? It’s like no. I [laughs] I already knew myself, I knew that I had Asperger's Syndrome. This is purely a hoop that I’ve got to go through, you know. |
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Gail finds the stress of socialising distracting.
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Okay, when you are saying about this… you’ve explained really well why you don’t look in people’s eyes…?
Yes.
If you don’t look at people in the eye, do you not have that feeling at all?
When you look into someone’s eye, it’s very immediate. You can see them, you can see like if I look in your eyes now, and also it’s really difficult because they say when you look in someone’s eyes you’re not supposed to do it more than… And I’m worried that I’ll do it too long and I need to look around me. And it's just, you’re thinking about that and you can’t think about what you’re going to say. I think right now I’m feeling a little bit nervous because I don’t know, but I’m quite relaxed and in my own house and I don’t feel on the spot or anything, but if this is was like a situation where I was feeling nervous or if I was feeling judged or something or if I was feeling ‘oh gosh I’ve got to perform’ then there’s always that stress and that stress can actually distract me from what I’m going to say and then I’ll start saying something and then I don’t finish it because I get distracted by the fact, by the actual act of talking and the actual act of people responding to me and all those different things are just really overwhelming.
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Gail finds socialising exhausting because there are so many things to focus on.
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And the thing is on our course, we do, we learn about autism too, and we learn about Asperger's Syndrome and the lectures on it were just very, very much. It’s like each time I learn about it I learn more things that I didn’t realise were part of it that I can also relate to. Because like when I first read about it, I thought it was more a sort of not being able to socialise thing, but there’s so many other little things, and I’ve read so many books on it now and it’s, it’s things like not being able to focus on more than one thing at a time, the brain sort of... focussing on one thing. And... I think that for me is what it makes, like I found socialising difficult because there’s so many things you’ve got to be simultaneously aware of. And so something like eye contact I find that difficult. Not because, not because I’m unfriendly or not because I don’t want to look in someone’s eyes, but its more, when I look into someone’s eyes, I see them responding to me. So I see myself then as two people. I see myself as the person I am talking, but I also see myself as someone that the other person is observing and interpreting through their eyes, and having that double awareness of being myself as I perceive me, and myself as someone else perceives just, it’s I don’t know it’s really distracting and confusing.
I’m conscious of paying attention then I will make myself hear what they’re saying, but even then I’ve got to consciously then say, okay was there anything beyond that that’s not literal that I have to then process. So it’s quite tiring and that’s, that’s another thing that I learnt on my course that Asperger's Syndrome is very tiring which really explains, like when I was in Canada, I would get so tired, I’d be having like twelve hours sleep a night and I would just be falling asleep during the day and I didn’t, I thought there was, you know, I thought maybe I had something like ME or what’s that other one they call it mono, but it’s like glandular fever. Like they were testing me for all these things that I didn’t have and it was, and I realise in retrospect is just because processing is so difficult and when I was in Canada I was making a real effort to, to sort of socialise with lots of people and I wanted to sort of change who I was, because I felt that that there was something wrong with me that I wasn’t sociable enough and, I think I made such an effort it was, it was just really exhausting.
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Gail was able to communicate with a young boy with classic autism through drawing.
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They put me to work with this one guy who’d been in England for two years and he still wasn’t speaking any English and he had, everyone was saying to me, that, you know, you look into his eyes and there’s nothing there, there’s no one at home. There’s obviously something wrong with him, so I need you to write down exactly what you see, so that we can get him statemented.
And when I worked with him, because I’d heard a little bit about autism, I did, it was really weird, there was part of me that thought I think he’s autistic from what I’ve read about it, and part of it I could relate to him, although he was worse than me, because I was always very verbal as a child. And he would stare into space. But I managed to sort of connect with him, and then he wasn’t always staring into space. I could sort of, he didn’t, he couldn’t apply language for some reason, but I managed to, he was really good at drawing, so I managed to communicate through drawing with him, and through sort of, I don’t know, just body language and all that kind of thing. But that, but working with him really got me sort of looking on the internet about autism and then I was, and then I realised how much it really did apply to me.
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Gail felt she was seen as geeky as a teenager and was ashamed when she didn’t fit in with other teenagers.
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And then I did a, I did my degree in English Literature, because I really liked English Literature. I went to Canada and did a Masters Degree there. And I think going to Canada was really good, because I was, I think I could out of my shell more. Because I was foreign, I could just say, look I don’t know what the, I don’t know what the social norm is, tell me if I’m rude, tell me if I’m rude. And so I could be really just like… and everyone was very accepting of that, and accepting of me being different and they put it down to me being an eccentric Brit kind of thing.
But it was little things. I mean I was odd, and I was treated as a bit odd. And, I think, I don’t know. And kids, yes, like kids used to tell me I was stupid and I would say, “But I get higher marks than you in school, in the lessons.” They said, “Yes, you’re clever and you’re stupid.” And [laughs] it was… it was really frustrating for me. And I knew, and I could see other kids were, you know, as a teenager you can see all the other girls are sort of bonding with each other and they’re whispering and you see that they’ve got something that you don’t have, and you see that you’re an outsider and you don’t know what’s wrong with you. And also I don’t know, I didn’t have a sense of style. I’ve never had any interest in fashion or anything like that. I mean I try to now, just so that I don’t look really unfashionable but at that time I didn’t really have any sort of interest in that kind of thing. I looked a bit geeky and I was a bit geeky and, you know, as a teenager… I think teenagers generally feel ashamed if they don’t fit in, they start feeling ashamed don’t they, and you sort of, I don’t know.
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Gail has found fluorescent lights and power point slides difficult since returning to college. Irlen (tinted) glasses have helped.
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I think then I really, really started to struggle in ways that I’d not… I was getting very dizzy and very unwell. It was, and they’ve got these fluorescent lights and they’ve got these power Point Presentations that when I studied English Literature we never had Power Point presentations and lectures... I don’t think we think we had fluorescent lights and the lectures weren’t compulsory then, and I would… my way of studying is just like reading. I would never go to the lectures hardly when I did English literature. But here they’re all compulsory, had to go to lectures sort of 9 to 5 every day, kind of thing. And I had to take a bus to one lecture that was in the City Centre at a different campus and I was just getting really, really unwell and I couldn’t, the Power Points were sort of, looking at them, the, the letters were jiggling up and down and stuff, and I couldn’t really read them properly and I was feeling really dizzy.
So I went to the disability services and, and they suggested scotopic sensitivity syndrome. So I looked, I looked into that and I thought oh yes, I’ve definitely got. It’s also called Irlen Syndrome. I was, have you heard of it, I R L E N? It’s, it’s visual processing, it’s, you can Google it and you can find loads about it. And so I Googled it and I was just like oh my goodness, yes, this totally applies to me, its things like not having good depth perception, things visual things jiggling up and down… Have you read Nobody Nowhere by Donna Williams? You know, she has Irlen Syndrome and she, she’s sort of made it famous with the Irlen lenses and it’s … I mean she describes her childhood, like I really relate to that, and she could see all the dust particles. She would just see every single one. And I, I was like that as a kid. I was like what are these little dots every where and no one knew what I meant, and it was the dust.
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Gail didn’t realise until much later why her stories she wrote at school were entertaining to her classmates.
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Well as a teenager you get mocked don’t you? You get, I mean I never really experienced any real bullying. I was quite lucky, but I got like, like one school that I was at, I don’t know, kids sort of laugh at you and make fun of you and also because I would take things literally. And I remember one story I wrote… like it’s little things like this where I wouldn’t see the big picture. I was reading Just William books and I was, because I wanted to learn big words so that I could use them in my stories that I wrote for school when I was about 13. And in these Just William books you always have this character, when they exclaim something it’s like ‘‘Goodness me!’ ejaculated William’s Mother.’ So I thought that’s a nice long word [laughs]. So into my stories at school that was written and of course all the other kids wanted to read, because I always did the best at English, they wanted to read my stories. So all the other kids are sort of giggling and I’m like, “What, what?” “Nothing. Nothing.” So it was only like in retrospect as I read this as an adult. I thought oh my goodness, that’s what they were laughing at. |
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Gail struggled on her Speech and Language course because there were so many different things to keep track of. She was allowed to go part time once she was diagnosed with Asperger syndrome.
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But, yes, but then I came here, because I’m from [county], but I came here to study Eng… speech and language therapy. And I think then I really, really started to struggle in ways that I’d not… I was getting very dizzy and very unwell. It was, and they’ve got these fluorescent lights and they’ve got these power Point Presentations that when I studied English Literature we never had Power Point presentations and lectures... I don’t think we think we had fluorescent lights and the lectures weren’t compulsory then, and I would… my way of studying is just like reading. I would never go to the lectures hardly when I did English literature. But here they’re all compulsory, had to go to lectures sort of 9 to 5 every day, kind of thing. And I had to take a bus to one lecture that was in the City Centre at a different campus and I was just getting really, really unwell and I couldn’t, the Power Points were sort of, looking at them, the, the letters were jiggling up and down and stuff, and I couldn’t really read them properly and I was feeling really dizzy.
And I was also, also, you see, I think one thing our course isn’t very organised, and so you have to be really, really well organised yourself to be able to do it, and I’m not very well organised. I have a lot of difficulty organising myself, which, I think if you just go into a job where you just, they tell you what to do every day, that’s fine, but if it’s something….
And when I was studying English Literature it was different, because it was very linear, we just had an essay every two weeks. We would just be t… you’d have tutorials that go with these books, so go and read them, have another tutorial, go write this essay, go write it, and then it was just. It was like that the whole time but on this course there’s so many different things that we’ve got to keep on track of, and there isn’t… If I’m told to do an essay I do it, but there’s not an awful lot of essays. A lot of it is just, you know, personal study, and you’re expected to know it and then re-produce it in the exams. And, the thing is I was getting really overwhelmed. I wasn’t doing very much. I was still passing, because I’m, I’ve got a high IQ so I’m quite good at that kind of thing, but I knew that I wasn’t doing half as well as I could do, just because I didn’t feel I had any idea what was going on.
I think, because I do, because I’ve got loads of strategies because I’ve had to, like to, you know, to live independently, you have to build up loads of strategies. So, but, they sent off the thing. So I got an Irlen diagnosis. These are Irlen glasses that I have now. I got that, and I got me Asperger's diagnosis. And they sent it off to the NHS and the NHS accepted it. And once the NHS had accepted it, and accepted me as a disabled student, then I got all the support from the disabled student people and from the lecturers on my course, because I’d been asking if I could go part time, because the course was too overwhelming, they were saying, “No, no, this course doesn’t go part time.” And apparently if you’re disabled you have a right to go part time. So then the disability coordinator said, “This girl’s got the right to go part time.” So then they let me. And …
And then it’s… because there was lots of little things at the college, like I was saying could you get the Power Point presentations onto the intranet thing beforehand, before the lecture so that I can, you know, so that I can actually read them, because I find it so hard to look at, at the overhead, and, it was all little things like that, and they were very, oh no, well, you know, we can’t always do that, no. And it was very, they didn’t want to, but once I got the diagnosis then they started doing that all the time and it, it’s just little things like that that just make all the difference and being part time, it’s a lot easier now.
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Gail enjoyed her Masters course in English Literature in Canada. Reading had been an obsession when she was younger.
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And then I did a, I did my degree in English Literature, because I really liked English Literature. I went to Canada and did a Masters Degree there. And I think going to Canada was really good, because I was, I think I could out of my shell more. Because I was foreign, I could just say, look I don’t know what the, I don’t know what the social norm is, tell me if I’m rude, tell me if I’m rude. And so I could be really just like… and everyone was very accepting of that, and accepting of me being different and they put it down to me being an eccentric Brit kind of thing.
So, I think that really helped me to come out of my shell in Canada and I had a really good time there. Yes, I mean I did a Masters Degree in English Literature, because I really loved reading. So that was sort of obsession when I was a kid, I was always reading novels and stuff.
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Gail finds the written word more tangible and is less distracted when writing online.
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Like sometimes when I’m talking to someone they’d do a sort of confused look like that, and then I immediately feel self-conscious and I think oh gosh I’m being confusing and then that makes it harder for me to say something. Like for me, I express myself much better in writing than I do in speaking, so I go on the internet a lot and I write a blog and I go onto forums and talk to people that way, and I find it much easier to connect to people through writing than through speaking. Because there’s not all the distractions, you just and once it’s actually in the written word you see it, it’s tangible whereas when you’re talking the words just disappear and you forget where you were going with them, but you can go back to them when you’re writing and you can see them and you can take your time and you can say everything you’ve got to say, without constantly monitoring someone’s response to what you’re saying, if that makes sense. |
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Asperger syndrome shouldn’t be seen as something that limits life but more as a difference. Use the “hyper focus” productively.
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A message for people with Asperger's Syndrome I think not, not to see it as something, I think to be honest about the, about some of the difficulties that it poses, but not to see it as a sort of miserable thing limiting your life kind of thing to see it as a difference and not to completely I think to use some of the differences. I think they can be negative or they can be positive, and I, for me, I think that I went through a stage of trying to be completely differently from who I am and now it’s more I try to, I realise, okay I’ve got this Asperger's trait and I can actually use that for good. So to be able to use the Asperger's traits which could be negative in a positive way, like things like hyper focus, like that can I can hyper focus on something, totally focussing on it and oblivious to anything else. But if I actually make sure that that, you know, I hyper focus on something that’s useful, like my studying rather than I don’t know, mucking around on the internet. Then it can actually be a really good thing. |
