Well I hadI had got a jobin office work, but I was very badly bullied and it ended up that I had to – my employment was terminated due to ill health andmy mum realised that something wasn’t right and well she had always had some sort of thought that I could be on the autistic spectrum. Well anyway unbeknown to her I did some of my own research because I actually told thepersonnel officer at work that I was autistic because I just wanted to I needed a way out, because I was in trouble, you know, I was being threatened to go before the disciplinary procedure, you know and it was allnbsp;then I had done someso I did some research myself and I sort of had me suspicions as well.

And unbeknown to me my mother had been told about Asperger syndrome by a friend of hers, because her son had Asperger’s and when she was told about all the symptoms she justshe was really certain that I did have this. So we decided that we wouldn’t be fobbed off any more and that we wouldpush for formal diagnosis.

So firstly I went to go I went to see my GP and told him about it and he said, Go away and let me think about it for about a fortnightAnd then so me and my mother both went back in a fortnight to see him and during that time, I hadwith some stuff that my friend had lent me I found the contact details of the, of the[county] and I rang somebody up related to them and he directed me to a clinical psychologist at the hospital and so when me and my mother were at the, at the Gps, we asked, we said that we have been recommended somebody so we would like you to refer you know me to him. So he did that. We had about an eight week wait and then there was a phone call from the secretary saying thatblah blah and all that and she said she would send, in a few days she would send a 48 page questionnaire for my mother to fill out, all about me.

And so this happened and actually it was the best time of my mother’s life to fill that in and tosee all the concerns she had and the things about me that she knew were, you know, knew were true and then a short time after that we were telephoned asking us to go and see this doctor. So me and my mother both went to see him.In fact my mother spoke to him continually for about two hours and I had to wait in the waiting room. Andthen they called me in after the five, after the two hours, and yes it was as we thought; I was given the formal diagnosis of Asperger syndrome.

Me and my mother were really.. it was probably the best day of our lives. Because she had struggled for 35 years with me and she was never given any help or support you know. She described it as a lonely journey for her sometimes. And we actually went out to the pictures that night to celebrate.So that is what it was like, you know when I was diagnosed.

My Mum actually thought I was deaf and blind initially, because of my problems with language processing. And visual perception. So I was like a deaf-blind child, the way in which I interacted with the environment, the way in which almost feral-like, in some ways. You know, would not want shoes or socks. Needed to feel. Needed to touch. Needed to smell. Needed to taste. Needed to lick. Needed to sniff, tap, move, to get a visual semantic reality, which I couldn’t get through my eyes or ears. So obviously, you put that into an environment and then those behaviours are displayed; the way in which I used to interact was through noises. Pattern. What Donna Williams calls ‘pattern theme and feel. Which is before typical interpretation. So it’s even before the literal which you hear about a lot with autism. But before the literal, before the significant. Before even getting the concrete understanding of something. That’s how I was operating. And very frustrated in here.

One lady asked me “How did it feel, not to have speech?” And I said “For me, personally for me, because I can only talk from my own perspective, you imagine the deepest part of the ocean. And the words are at the bottom of the sea bed. And that was the struggle, to get all these words that were fragmented in my mind.”

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 soSo 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.

I mean it’s not actually that long ago, I’ve been diagnosed as an adult only a few years ago, by a local psychiatrist here working in the NHS, the diagnosis being mild Asperger’s Syndrome. And, not a diagnosis that surprised me, I was perhaps surprised that the psychiatrist picked up on it. But you know, a diagnosis really that I’d almost concluded myself beforehand that that was a condition that I did suffer from, so not surprised. it’s just really an official confirmation of something that I understood in my own mind to be the case already. But it’s literally only, only within the past few years that a diagnosis has actually come.

Yes, and I mean speaking to somebody whos had you know, a fair bit of contact with mental health services over the years, you know, I’ve found myself in the past being apparently on the verge of a false diagnosis of schizophrenia, this is going way back into my later teenager years. So, you know, it’s the advance in understanding within the psychiatric profession, you know, of Asperger’s Syndrome that’s you know, given the correct diagnosis now where they were really going down a completely separate path, and a wrong path in the past.

What was it about that you were like at that point that, that made them think you may have schizophrenia?

That’s hard to judge, I mean maybe my sort of vagueness at the time. Maybe my apparent fixity of thought. I mean I can’t think it was anything that substantial. I mean I think they really were barking up the wrong tree as far as I could see. Obviously I was quite socially withdrawn, maybe as an interviewee to them, you know, I was not very clear about things. I think they really were barking up the wrong tree completely. And I was, was quite alarmed at the time, you know, obviously that that was in their thinking. They never did say that I wasyou know, they never did come to a firm diagnosis, but that was their thinking. You know, so and I discovered that a) talking to a psychiatry social worker, and b) you know, eventually getting hold of my medical records some years later. But I can’t think that they were working on anything particularly substantial at all, and I think they were completely you know, going down the wrong pathway and a GP of mine said that was quite common at the time was to view people with Asperger’s as though they were schizophrenic. But it’s quite concerning that they could potentially make, or would be going in the direction of making such a blunder.

In relation to diagnosis, I’d actually been diagnosed many years earlier aswell it was only a suggested diagnosis of schizoid type personality disorder. And when I saw this, I remember, getting it at the time, and the psychiatrist really wasn’t very nice about it to be honest, he sort of, his exact words were, This will end of a lot for yo which was a rather cheerful way to introduce someone to this.

But I went home and read about it, and I just wasn’t convinced. It just didn’t strike me as a) particularly good signs, and b) suitable for myself. But when I actually saw autism and saw some of the characteristics of it, it’s just so, it’s just applicable, it just worked. You know, things, things which I’d never understood about myself and been trying to understand for many years as to why I was different, trying to explain about all sorts of various theories and I appreciate that none of them were really working and then suddenly I just saw autism’ and thought oh wait a minute’, you know, the problems in my head quite simply that’s, that’s where it’s all come about. Although I very much enthusiastically embraced it; indeed I got the diagnosis in about six months, and I remember deciding that even if they said I wasn’t autistic, I decided that I definitely was, because it just fit so much there was no particular issue, and they definitely diagnosed me.

So quite a wide range of things to try and understand the condition, really. Because just trying to help myself understand.

Understand the human condition?

Yeah. Yeah. Because I mean I did find I did find it very strange, and I mean at one point I did try to section myself, because life was so painful. But that actually turned out to be quite a good experience actually because I mean I actually got to then look at the mental hospital and see people are genuinely mentally ill. And that was sort of a hard moment but, okay, different, not ill. So I knew that much. That sort of 19, 20 – 19 or 20 years old, so. And I, I had a good chat with one of the psychiatrists there, and he said, you know, you’re too sane to be in, wanting to be doing this. And it’s like ‘yeah, yeah. Although being sane is sometimes a problem. Being [Name] a problem because you have to accept a certain amount of irrationality in, with people. Because that’s part of the lubrication of society, is that you have to accept a certain amount of why, of the humorous and distance and everything else. It’s, there’s no clear, you know, try to be rational, try to apply things, it just doesn’t work for, work. So you have to become more tolerant of that, which I’ve sort of become calm over time. But it’s been a, a long process.

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 ofThey 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.

Andit 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 becauseI 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 IYou know.But then, so after speaking to this person, you know, who said Oh it sounds like you should look into itYou 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 findfound 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 itSo we just went into all the great detail of why I had got it, and he said, Okayreferred me back to the psychiatrist that I had seen previously, who went, Oh my God, yes, why didn’t I pick up on itApologised profusely for sending me to all manner of group therapies and things which just made me even worse. Referred me toCambridge who then diagnosed me basically.

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. SoI 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 bee

OriginallyApril 2006, so it was last April that I, approaching eighteen months ago now. I think it was sort of something that I felt I sort of had to face up to and stop sort of sticking fingers in the ear and pretending it wasn’t an issue, which I had more or less always done previously. I had been very sort of adamant; everything is fine, everything is normal. I will fit in. I will behave in the manner that is expected I will do all sorts of things that everyone else does and just pretend that this isn’t an issue. And I think on the whole I was reasonably good at that. But it, you know, sort of day in, day out, sort of doing the, I think the best way to describe it, would be sort of, you know, putting on an act and you know, playing that role, just became sort of mentally exhaustingand eventually reached a point when I was working where I just thought I can’t go in this week, no, just not up to it. Not happening. So I didn’t book any shifts. I didn’t go in. And then the next week, it was no I don’t feel up to it. And that sort of went on for, you know, a few months.

And, you know, sort of a year laterI sort of realised, okay this is not good. [ahem] You know really had to kind of face up to this as being an issue and I decided that something had to be done about it, and so it would have been in sort of like the January, I started looking into going for a diagnosis of some kind.