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Damian suspected his son was autistic then realised the reading he was doing related to himself. He found autobiographies were more helpful than diagnostic criteria.
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Well do you want to start from when you first received your diagnosis of Asperger Syndrome or realised you had it?
I first realised after, well, it’s probably about five, six years ago. Coming up to six years ago, when my son was coming up to two years old, and his mother was starting to think that he might have Asperger's, and then, so I started looking into it. He turned out to be classically autistic, but when I was reading the books about it and things, the stuff about Asperger's related a lot to me.
And so I kind of thought to myself, I probably was, and it was mainly through reading autobiographical accounts of people because I didn’t really relate initially to the diagnostic thing, but more to people’s stories. And then, I decided after a while to, with a lot of people I met saying, oh you may as well see if you’re diagnosable, kind of thing. And then it took quite a while but then I was only officially diagnosed last year at the [hospital name].
What was it about the diagnostic criteria that didn’t really fit?
Imagination and the idea that you don’t have empathy and understanding of people. That’s the thing that doesn’t quite work in the same way as others, but I don’t agree with the whole theory of the mind theory. I know people can struggle with it, or express it. But I think I’ve got a perfectly fine imagination, a very vivid one, and I think I can understand other people quite well. So in some ways I miss out on things, so... the sort of social niceties, but I just think if it’s kind of mis-worded slightly, it’s kind of described as a disorder and an absence, a lack of a difference from normal but I think normality is a fallacy anyway. Complete gobble-de-gook to me. And so, as a description, and way of labelling someone. I know that’s how they work, and it fits more than other criteria do, but... I do have obsessional interests and stuff like that. And in some ways I’m rigid and stubborn, but in some ways I’m very flexible and adaptable. So… I just don’t like to be boxed in that way.
But reading the autobiographical accounts it made a lot more sense. It was how people felt at school. How they experienced other people and what they liked and disliked. A find of lack of imitating others, the non conformity, the problems with authority figures, and then you get labelled with oppositional disorder for that and it’s perfectly rational behaviour in my mind and it’s just this kind of thing and it’s just to me a way of thinking and one that has its advantages in my mind.
I know that I have abilities that many do not, but then I think a lot of people with autism are under estimated on what they’re capable of doing. I don’t really like the whole high low functioning kind of thing. People are themselves and we are all different and have different potentials. I’m clumsy and cackhanded, my son is classically autistic, but physically he can do things I can’t do. He’s got horse riding grade one, and I’d be terrified to go anywhere near a horse. So it like depends on what you’re comparing. We’re all different.
I don’t like the kind of negativity around a lot of the labels because they don’t see those strengths in people, or the positivity. I think that’s why also autobiographical things I tend to relate to a lot better.
The Sainsbury book particularly is a great one, that is very good. It started off with this list of quotes from her school report, and it was like reading my own school reports. And so, oh yes, she’s been where I’ve been.[laughs] And I guess it’s kind of, I had a pretty horrendous school life, and to know that you’re not the only one who went through that, was judged nastily and people didn’t see what you’re capable of. Because some things it just takes time for me to learn things with other things I can do it automatically and other things, I probably will never learn however hard I try.
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Damian’s GP wrote and said she couldn’t do much because Damian’s IQ was over 70.
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Initially I went to my own GP. And I got a letter back saying she couldn’t really do much for some reason, and I obviously had an IQ above 70 which I thought it was a bit ridiculous. And so I got in touch with the [county] Autistic Trust and some other people and saw a different GP who referred me to them. Then I was put on a waiting list, and then went up to see them with my mum. And my mum was interviewed separately. We were both interviewed about my childhood and things, then in the afternoon they came back in with everyone there, and were quite unequivocal about it and said I had indicators across the board although I was obviously very capable and high functioned [laughs]. |
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Damian was upset when he was first diagnosed because of the labels he’d been given in the past.
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So when I actually was diagnosed it was kind of I knew what was coming in a way and it didn’t affect me very much. I was upset at the time, when I first read these accounts, because it kind of hits you very hard and quickly, that sudden realisation. Because, people had given me different kind of labels in the past or described my behaviour in not so nice ways, and I struggled to cope with various things socially, and it was giving a bit of an explanation to that. But, it was also a good thing as well in the long run because for years I thought I was this kind of uniquely different person, you know, and I was quite isolated and I had all these abilities and talents for things but - and found some things a lot easier than other people - yet, other things, I was, which I was expected to be good at, I wasn’t.
So anyway it kind of was a much clearer name for it than I’d had previously, and realising that some of the people I’ve been friends with over the years in a sense were probably like me and there was a few people like me out there [laughs]. And in a sense it gave me more motivation to say that, because I don’t see it as a disorder or inferior. I see it as sort of me, you know, just different. So I want to say that to other people like and help other people who are, think in this odd ball way and help others. It’s given me a lot of focus, particularly with my son being autistic as well. So… I brought things together a bit in my mind, as I say gives a name to it.
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Damian tends to go out with “odd ball misfits” and relationships have been very intense.
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I’ve had good friendships with people. I think I struggle with kind of long term relationships a bit. I don’t know really [laughs]. I just have. I guess it’s relationships are tricky when people have different wants and needs and things or expectations. I find usually friendships with certain people easier in a way. The kind of people I’m on, I’m on the wavelength with or have a similar interest to. Although I’ll happily talk about one of my interests for hours on end so if there’s a... or a similar temperament to me, then I tend to get on with people okay. I have some good friends, I think who I’ve been in touch with for a long time. It is mainly through interests I think sort of musical, or table tennis, or study or whatever. And you occasionally meet someone you get on with. I’ve only ever tried living with one person in a relationship and that didn’t really work out. I think I’m quite an intense person and I tend to attract people of a similar nature.
A lot of the people I’ve been out with in life have had sort of mental health difficulties [small laugh] or traumatic pasts or sort of odd ball misfits. And some, sometimes I’m the more kind of stable, together one but it kind of fizzles out for whatever reason on their side of things. It’s hard to sort of explain why it, relationships have been tricky, it’s kind of oh lots of reasons. Partly to do with the way I am, and partly to do with the way people are who like me. It’s hard to explain, probably the intensity of the thing. I don’t know. I guess I’m quite stuck in my ways as well, I don’t play social games so it takes a certain kind of person to like what I’m about I think, and it tends to be that they’re a bit that way themselves. It’s starting to sound like I haven’t been that successful in anything [laughs].
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Damian’s relationship with his son is “the best thing”.
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And what about living with your son?
Brilliant, yes, it’s the one relationship that works come to think of it, in the sense I don’t even see that as a relationship. I didn’t even mention it. We’re that close in a way. Best thing ever I’ve found. Probably the hardest too but he’s brought a lot of joy to my life, because he’s a very giggly little thing. Happy. He’s a lot like me with less words in a way and a bit blunter sometimes. A kind of more extreme version I suppose [laughs].
How long has he lived with you?
Only three years. His mum has him at weekends. She has her own difficulties and things and is struggling to cope and stuff. But she’s doing well now, and that so yes, bit of an oddball bunch [laughs]. It’s worked out well though, he has a good relationship with his mum and we still spend good time with each other.
I’m good with the whole school routine. I think he likes that, because we both live by that kind of day to day routine a lot … he knows where he is with me. I’ve more on a wavelength in a sense with him, than probably any one even though he doesn’t really talk. He has sort of one and two words. Sort grunts most of the time. ‘Hungry’ [laughs]. So there’s that instinctive thing with me and him, you know, and we just kind of understand each other in a weird way. And I think that’s the main focus of my life. I don’t know.
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Damian is constantly studying after dropping out of school and being written off by teachers. He is now doing a PhD.
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From where I same sort of academically I got a scholarship to private school did hopelessly there, and had a horrible time. I got sort of 4 Cs, 3 Ds, and an F at GCSE. Dropped out, went to college, got a B, and E, and a U at A level. Went to uni dropped out of that course, went back to doing more A levels. Got a B and a D. Then did a Degree MA, PGCE and am now doing another Degree and PhD and stuff. And I am constantly studying and to think I had teachers saying I wasn’t very bright, that I had no organisational skills or motivation to work. And its kind of those labels as well that, how teachers see you, how peers see you, how doctors see you. There’s all felt like I’m being negatively judged, when I knew I had ability [laughs]. And it was a good thing I was so stubborn and bloody minded all along because otherwise some friends of mine kind of dropped out of the system altogether it seems because they just can’t put up with it.
I’m going to do my PhD. I think it’s very hard now my son’s living with me, because I’ve got very little time to work, only sort of term time and school hours. I was made redundant from the only local job. So it’s difficulty with moving, getting work in the area I’m qualified in which is very specialist, and I don’t want the horrid kind of work I used to do when I was younger. And I want hopefully, sort of to do research into autism and education and carry on with my studies and do more philosophy I think. Kind of do research and writing and try and get the odd session or two teaching and stuff like that really. See where it takes me |
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Damian has always had a problem with being told what to do, especially when “it is ill thought through” and he isn’t listened to.
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After university I couldn’t get any work. I had never been good at job interviews. Even after a Masters Degree I ended up working as a cashier in William Hill for a while because I was good numbers. I did a bit of MORI polling, knocking on doors and being shouted out [laughs]. And then the PGCE which was quite stressful and hard to get through and that was after my son was born and I was just determined somehow. I had to make all these qualifications work in a job way. And I did a good job on my work placement and I managed to get a job at an FE college where I worked for five years.
In that time I think I was overloaded. I was paid the least in the department and probably had the biggest workload. And then I was made redundant, the summer of 2008 and I feel that was my department, I feel ganged up against me as a way of blaming poor figures on one of the courses to a higher manager and I was scapegoated, because I had the least power, personality wise in the department. And nobody understands what a sociologist does anyway in FE colleges. So although I fought an appeal and wrote almost a dissertation of reasons against it in two days, I was still made redundant. But… So generally my experience of work has been awful [laughs]. What more can I say really? I hate job interviews. Don’t like offices. I don’t like being in one place for too long. I tend to not get on with managers. Never given any flexibility in the role that I’ve got so it kind of deadens you, I find, work. Or you’re just misused by people and blamed for their mistakes. Things like that, so … I don’t like it very much either when it runs the way it does.
Can you explain what you mean?
The kind of hierarchy and power within work places, how others treat me, not being valued. Yes, just… never really had a positive experience of a work place for any extended period of time. I mean I enjoyed doing the lecturing at first, but it kind of gradually went downhill. I had sort of four managers in five years or something. Each one was worst than the last, total chaos really. So … I think given the right environment and the right people I’d happily be a workaholic and was in that job. I took a lot of pride in it.
It’s funny because I didn’t have problems with students, generally that other teachers did. It was occasionally colleagues and virtually always management. And I’ve always had a bit of a problem with authority I think and people telling me what to do. Especially when it’s irrational and ill thought through and they’re not listening to you. You end up in a bit of a stubborn stand off situation [laughs]. So I tend not to roll over very easily. I do understand things, you know, I mean there’s some, my mum’s says I’m a pushover on certain things and on other things I’m not at all. So … I think sometimes with teaching it was fine in the classroom, because I was leading it, and people were looking to me and my store of information to explain things and it was my structure. But in the office in the team meeting, in the other things around work I didn’t find that any where near as straightforward. And I taught adults. I don’t think I could have coped with thirty children in a class... [laughs] No. [laughs again]. One’s enough, just put it that way.
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