Actually quite late on, because when I was really young, I didn’t really have any interest in myself or other people. Very typical lining things up, would sit for hours and stare at the washing machine spinning round, that type of thing. So when I started school I didn’t really acknowledge that I was different, or that anybody different was different from anybody else. I would say it was probably around 13 or 14 when I went tofirst started senior school which was a lot bigger, that I noticed that other people did, you know, different things to me, and I always had someone following me round and other people didn’t, and I think that was when it was. It wasn’t explained to me, because I’d always grown up with the word, so I knew it, but I didn’t actually know what it meant until I was probably around 12, 13, maybe 11 at the youngest.

And how did you find out what it meant?

I asked someone I think. Just turned round one day and asked someone and they explained it to me, but still even then it didn’t really make any difference to me. I didn’t really care. I didn’t want to know about it. Not because I didn’t want to accept it, just because I wasn’t interested. It wasn’t important to me, it didn’t get me something, it didn’t get me sweets or food or drink or toys. So it was of no interest to me, it didn’t stimulate me. So I think probably it was until I was around maybe the age of about 20, that I actually wanted to start learning what it was, and looking into it myself. That’s when I first, I suppose showed an interest in it.

Your mum said you were diagnosed when you were very young. So you’ve grown up always knowing that you’ve got autism?

Not until maybe my tweens. I may have heard some stuff about autism, but I didn’t know what it meant until pretty later in my life. I think I may have known what it is when I was in my tweens.

And what does it mean to you now?

it’s really hard for me to say to be honest.

Did you want to try or not?

Maybe some other time.

I suppose when I first got the diagnosis everyone sort of, everyone didn’t really know what to do. That was 1997 when I got diagnosedprobably a lot less information about then, then there is now. They were all sort of like what do we do here? What do we do here? And you know I really don’t know if my GP knew really what to do or my psychologist, my psychologist really knew what to do.And my parents certainly didn’t know what to do at first because they were coming to grasps with this whole new concept.So… when I did, so when we did find out it was a bit of a shock and we didn’t really how to deal with it.

And just as we found, I was at the academy, it was quite a big school and foryou go to go all the way over to a big academy, all of a sudden there is like 1,500 pupils. It is a very, very big school. The corridors are quite crowded. . A whole lot of new people to meet and I would say that at that stage it became quite, really quite difficult for me to deal with it. And [coughs] I would probably say that was probably the most difficult point was when I first found out because when I first found out I suppose I don’t .. I sort of you know, the feeling of being, well basically being disabled in a sense thatyou sort of think that is it for the rest of my life. I am probably not going to have that much opportunities toyou know move on or you know make friends because basically someone’s sort of saying, by the way, you are not very good at speaking to people, so when someone says you’re not very good at speaking to people, it is pretty soul destroying, not good for your confidence and you sort of feel quite bad about yourself and stuff.

And when I found out I just you know, felt that you know if I was ever to speak to someone, you know, it was almost a burden for them and it is really difficult for them.
And then maybe, and then, this was the problem, you know, in my first year at secondary school, it was really difficultreally difficult to come to terms with it, really difficult to deal with.You know there was a number of run ins with people and also you know everyone was always getting a bit desperate to try and help me, so I am getting these visitors and all sorts of people and I sort of felt a bit of a zoo animal, because there was people, all sorts of people, you know from different health professions. And yes, they did try to help me, but I just sort of felt they are going to come in and they are going to ask the same questions again and again. And as I was, I was really fed up with it, but at that point I really just, I really sort of thought there was no hope and everyone sort of thought there was no hope.

And my parentsI mean it was just guaranteed that I was going to being in residential care for the rest of my life of some sort or some form because I just couldn’t, I couldn’t deal with the rigors of daily lifeand obviously for my parents it was very stressful, really very, very, very stressful.

Can you remember what you thought when you were told you had Asperger’s syndrome?

Well I can’t really remember. Well about nine years ago, when itI think I quite liked having Asperger’s syndrome. I liked thethe idea ofbecause there is a very stereotype of Asperger’s syndrome, being very, very sort of… logical and… almost like a robot type thing. Yeah.So like terminator, sort of terminator but with feelings. So yeah. A terminator but with feelings… I quite like that aspect of it.

But I can’t remember exactly how I… thought at the time. I don’t think I was surprised. I don’t think I was surprised. I think my clinical psychologist had an idea that I might have Asperger’s. It was some of the things I used to do, I think, maybe like taking things literally and maybe being shy as well I think. And… being shy.

And what was it that made you think that you wanted to get the diagnosis?

I didn’t want not to know. I mean if you have got something that you think is there, I think most people would rather know, than just bury their head in the sand for instance. You know, I thought, well I would rather know for sure, becausein actual fact, I got really concerned about it. I got really worried and paranoid and I really needed to know because I was getting really anxious about it. I was thinking, well, if I havebecause it looked so familiar, looking at all the, you know the diagnostic criteria and reading people’s storiesand looking through the leaflets that I got from the National Autistic Society. I just, I thought if I haven’t got Asperger syndrome then what is wrong with me. I thought if I haven’t got it, then there really is something wrong. I didn’t see having Asperger syndrome as being anything wrong. SoI just needed to know.

I mean I was started to think I was getting all bad back trips into my past and hearing my Mum going, Why do you always have to have something wrong with you?Why can’t you be like everybody elseAnd I was thinking, perhaps I am making it up, perhaps I am imagining it. Perhaps I have got Munchausen’s syndrome or something really sinister or, may be I am really, I really am mentally ill. So I needed to know. It was stressing me out.So that is why I went to get the diagnosis.

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 we go back to the diagnosis then what did you think on that first diagnosis, the private one when you were told?Can you remember how you felt?

I remember feeling beforehand, sure of it. I mean it was something that I had sort of been aware of, for many, many, many, many yearsparticularly in fact I was, there was a friend who I took issue with some of their behavioursand raised the issue with them, and they eventually said, Oh well, you know, it is because I have Asperger’sAnd I really over reactedI was very much of the well, you know, I am sorry, you are not going to get that as an excuse. It just means you have to try harder, you know, and I was really sort of quite rude, went completely over the top about it.And then sort of basically didn’t speak for like about four years.

And I think sort of going for the diagnosis, more than anything, was for my own, hm, it was really sort of something I needed on sort of a personal level, as sort of a further step to accepting this is how things are. This is the problem. You know, you can’t sort of pretend that there are no problems going on here.You do have issues with these sort of social things, you know, it is a problem, you know, doing this sort of normal nine to five job, and commuting and such. You know, lots of millions of people all around the world do this successfully, why is it particularly you have a problem with it?

And I felt that I needed the diagnosis more for sort of my own sort of personal growth then anything else and I did worry for, you know, weeks and weeks beforehand, Oh my what if, they come out and say, you know, you don’tAnd then it would sort of very much feel as though, Oh it is just me. You know, I am just sort of a screw up. You know, I can’t sort of, you know, in my head, sort of use anything as an excuse. It is just all completely my fault. It is just meAnd so I sort of felt really as though I needed it just to kind of accept it, and relax and then to deal with it as an issue. And so when I got the diagnosis I kind of wasn’t really surprised. I was more relieved then anything else. You know, it was a, you know, I am not being a hypochondriac; it is not just something that is all in my head. You know, this is, you know, it is something real.

And I think also if I hadn’t sort of had the diagnosis, you know, I, I mean I would never sort of have come to this place, you know number six blah’ blah’ blah.You know I would never have pursued it or felt as though I kind of deserved any help with it. You know I felt I needed something on a bit of paper to say look this is real, this is official, you know, please, you know, be nice to me.Particularly sort of when the whole sort of process of going back to university. You know, now I have a bit of paper and I can sort of say, you know, please, can we not do this, can we do that, may be slightly differently. And I feel as though [5 sec pause] it is sort of allowed. I think before, you know, I always felt as though I was some sort of charlatan, you known pretending there is something wrong and I think more than anything, it was just for my peace of mind.

So what did you think when you actually received the diagnosis? Can you remember what you thought?

Well, relief! I thought that is it! When I first went over to the clinical psychologist he asked me a list of diagnostic questions. And [snaps fingers] somebody understands what I mean. Yes I do constantly misread people. I have got a habit, a long history of misreading people. Not knowing quite what people’s motives are, unless it is very obvious, if it is absolutely blindingly obvious.

You are doing research. You are a researcher. I am not. This is the roles, the roles are very clear. You know. It is when the rolesat work, at work and this person is a manager or this person is the pit boss or whatever you know, this person is the designer, but it just gets vague, because it is not clearly defined.But I, yes when I had to go back again the second time to see the clinical psychologist and he said, Yes, you have certainly got Asperger’s. In my opinion you have got Asperger syndromeHo! at last. Somebody bloody understands, you know,and it just fitted into place.

What was it that made you want to get the diagnosis in the first place?

Well because I’d got that many labels shoved on me. I wanted the correct label.

What other labels?

Well, I’ve had, I’ve had stupid’ thick’ weirdo’ probably. I’ve had all sorts, so I just wanted, if they were going to call me weirdo, then obviously I wanted the correct label to go with it, you know. And actually the person who took me there, and actually the person who actually did my report for the college, she actually was confirmshe actually also was confirmed that she has Asperger’s as well. So I think she got, she told me when she came out that she’d got hers, but she’d got, because she’d actually read on a few things, and she actually thought that she might be a contender for Asperger’s. So she went and saw her diagnosis, I think she might have gone and got hers privately. So I think hers might have been a lot easier and a lot quicker, because I had to use the National Health, it took a hell of a lot of a longer process and, and trying to cajole the GPs isn’t very easy. Trying to make a GP understand that you have to speak to somebody that knows what they’re talking about. You can’t send me to somebody that doesn’t know. And
So, it is very hard and I think in my day, there was no chance of seeking an answer, and I think maybe I could be one of the lucky ones at my age that I have found an answer. There’s probably a lot of people my age and older that perhaps may not never ever find an answer, because GPs are just not aware of the autistic spectrum and, because they just know nothing about it; they’re not aware, maybe they might be in children, but as for adult, I think, as far as GPs are concerned today. I think what they were expecting with me, was just to live with it and just get on with it, because, there’s nothing you can do about it. Because I think they virtually say, Well you’ve lived with it up till now, you can live with it a bit longer, but these children can’t they have, they do have that sort of priority And I’m thinking well maybe yes, maybe no, but, I do think, no matter what age you are, I do think you deserve an answer and shouldn’t be allowed to go through the rest of your life, having to live, just live with it, and get on with it.

Although suffice to say this is probably, you may not like what I’m going to say here, but suffice it to say, it would artificial insemination as far as my genes, i.e. autistic ones are not going into the mixing pot when it comes to that sort of thing. Which I appreciate it isn’t particularly pro autism but I’m not pro autism. I don’t want to ever see any autistic people being trod upon, it happens, but when it comes to sort of autistic rights and all that sort of thing I can’t accept that quite simply because I can’t see anything good about autwell there are very few good things about autism; it’s ruined my life, and I never want to be autistic, and if I had a choice to not be autistic I would neverI would simply take it. And I do see a lot of other people out there, I mean I spend a lot of time with the internet and I do see a lot of autistic advocacy, and I’m not convinced quite simply, because you know, on one page of a forum they’re going on about how it’s great to be autistic and how you know, more people should be autistic and all that sort of thing. And then another forum, another part of the same forum, they go on about a list of their problems; how they’ve got depression, and you know, antidepressants and all sorts of personal issues and I’m thinking to myself, well wait a minute, these problems you’re having, probably wouldn’t, you wouldn’t actually be having if you weren’t autistic, so it doesn’t make sense to me. I just can’t say anything. I really can’t say that much positive, particularly positive things about autism. it’s ruined my life as far as I can tell; it’s ruined a lot of lives of people I’ve met who have been autistic.

I think that it actually. Well it actually meant a lot of work in some ways because you actually have to rethink your past. So in actual fact it actually sort of made me sort of, sort of go through a sort of more depressed period. And actually made me sort of insular to myself which meant, that’s not generally very good anyway. So, because I have had sort of depressive episodes. It’s a case of looking at how, looking at the past, and also you have to sort of go through a period of understanding but also going through a period of grief, as well. Because you have to sort of give up some stories, have to give up some ideas, and you have to sort of reimagine the past. So it actually takes up quite a bit of energy. It’s like a, it also the diagnosis wasn’t that comfortable to accept, initially. So I think it took me about two or three years to really feel sort of comfortable with that. So, you know, it wasn’t so it was definitely, definitely a process, and it’s definitely a process that required a lot of internal introspection. So that sort of generates its own issues, if you go in yourself. You know, there’s quite a lot of darkness, and you wonder, and part of me now is that, you know, I can accept that I have those dark parts of me, but that’s okay, they’re just part of me, they’re not the whole, the whole spectrum of my personality, or who I am, they’re just parts of what, what is my, my personality and my, my condition.

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. SoI brought things together a bit in my mind, as I say gives a name to it.

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 thediagnosis.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.

When you came across Asperger’s then and you were reading on the internet and things, what did you actually think when you recognized it first of all?

That was me. I think most people that I speak to, or write, well not speak to but write to on the net and stuff have explained the same feeling really that it is like opening, it is like opening a page and saying that is me. That is 100% me and that is the nearest thing to anybody understanding . I suppose it is like looking above, from above at yourself and saying that yes that is me. That is the only way I can explain it really. And it is nice all of a sudden to find out that I have got a thing about labels. I don’t think labels are all that good. I think I would like to call them more like, it is a starting point really but it is a starting for, it was a starting point for me to say well yes, that is me. I understand now why I do things and it makes perfect sense as to why I do those things. I mean why I annoy people the way I do. But at least I understand why and it is nice then to actually learn about it, andand do something constructive really about it.

So going back to when you got this diagnosis then, the second one the Asperger’s, did you know anything about Asperger’s syndrome at that point?

Not really, not.I mean I had heard of, I heard of autism, and I had heard of the more serious of cases you know, but I hadn’t you know, heard of the more wild ones, such as Asperger’s.I don’t want to be really cheesy and say, oh it answered a lot of questions, but it really did…

What sort of questions?

I mean it was sort like why am I different? I was more curious as to how I was different rather than why I was different,I guess. I don’t know. But it sort of made me happy and pleased and all the sort of other emotions going through me to get a diagnosis like this. You know, it was sort of right okay, we know what it is now, so we can sort of put things into place to, I guess, help, and we can explain to people, you know, so if they can, what is the word, they can put things right to, you know, make the experience, the experiences between the two of us, easier and moresteady and you know make sure everything went right, I guess.

And did this as well the diagnosis, did it give you support, or she give you support for your attention problems?

No, absolutely not, though. That’s the compounding thing that I’d gone there with this one thing in mind, thinking because that was to me what was creating the biggest problem, not only in employment, but I’d also tried to return to education. I tried to complete an access course and found that very difficult because of my concentration problems. Access to higher education that is. And no, obviously, you know, the NHS are working within the constraints of their resources. They can only offer you so much time and you know, they’ve got perhaps some people who are more serious than others, but you know, if they review your case on a periodic basis there’s only so much can be fitted into that interview and, things to do with my concentration were always getting pushed down the agenda and getting squeezed out. So no, no, the original problem that I’d gone there with ironically didn’t get addressed at all. No.

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.

And after that I read. I don’t go crunching myself into books about it but from what I have read. I seem in many ways to be quite, I seem to have oh some, some at least of the characteristics that you would expect of someone with Asperger’s.And then I began to feel, what about my age. I am not a child any more. Had I known years ago when I was 16 or 17, had somebody said me, We think you are a bit special. We think you have got Asperger syndrome. Are you very good with languagesOr, Are you very good with detail?Do you collect things?Are you very good at collecting things?Collecting facts? Collecting, like a train spotty mind if you want to put it that way

And somebody younger, if that was assessed.If somebody younger was seen and assessed, screened and somebody would say well look don’t do anything drastic, we will help you to make the most of it, to make the most of your life. And you will live a profitable and productive life and we are not going to mollycoddle you, but we will be there to keep an eye on you from afar as it were, you know, to make sure you are not going to get yourself into serious difficulties and my life would have been completely different.And I would like that to happen to younger people now. I really mean it. I really would. I know it sounds a lot possibly, but I don’t think. I have thought about it. I mean, I said to you when you walked in here, before the camera was on, one of the things is, about this, people with Aspergers is we do pass for normal quite well.

If you see me walking down the street inCity, or London, or Amsterdam, or anywhere like that, there is nothing obviously, physically about me, that you could say, well that person You could see someone who is profoundly autistic. Obvious that bloke is autistic really or any sort of physical disability obviously or even if someone is deaf, you can very often tell or… But because we seem to function quite well or appear to function quite well. We seem to dress normally. We are not particularly flash, but we are not particularly scruffy, but… people think we are, but I think what we do is we fool everybody.You know we seem to have got a habit of passing for norma – is the word.Itsbut I wish I had known years ago

In that sense I suppose it made it slightly easier but slightly, slightly more difficult in the way that, you know, you cannot go into these situations I was talking about before, and you kind of go in and say, instead of thinking right here we go, let’s do it, and then coming out, oh well we’ll try next time. You go in and say, I can’t do this. I suffer from a social disorder. I just can’t do this So that, it kind of creates a block on your normal behaviour, but on the plus side it, what for the more informed people it does explain some of my more peculiar tendencies.

I mean go into a work place, and then, people, if I tell them who I am, and what I’ve got, then they are able to compensate around it and talk things through with me. So I wouldn’t necessarily call it a label I’d call it more a wallet card. You know, nobody can walk down the street and notice that I have Asperger’s. But I can tell them. That’s… but then the key varies knowing just who to tell. Yes.