Age at interview:: 28
Sex:: Female
Age at diagnosis:: 3
Background:: Alex is unemployed and single. Ethnic background/nationality: British

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 to… first 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.

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Age at interview:: 22
Sex:: Male
Age at diagnosis:: 2
Background:: Richard is 22 years old, single and unemployed.

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.

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Age at interview:: 22
Sex:: Male
Age at diagnosis:: 2
Background:: Richard is 22 years old, single and unemployed.

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.

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Age at interview:: 22
Sex:: Male
Age at diagnosis:: 12
Background:: James is a university student. Ethnic background/nationality: White Scottish

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 diagnosed… probably 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 for you 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 that you sort of think that is it for the rest of my life. I am probably not going to have that much opportunities to you 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 difficult really 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 parents… I 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 life and obviously for my parents it was very stressful, really very, very, very stressful.

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Age at interview:: 32
Sex:: Male
Age at diagnosis:: 23
Background:: Daniel, 32, lives with his parents and is an unemployed poet. Ethnic background/nationality: White British.

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 it… I think I quite liked having Asperger's syndrome. I liked the the idea of because 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, because… in 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 have… because it looked so familiar, looking at all the, you know the diagnostic criteria and reading people’s stories and 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. So I 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 else?” And 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.

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Age at interview:: 22
Sex:: Female
Age at diagnosis:: 21
Background:: Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White

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.

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Age at interview:: 27
Sex:: Male
Age at diagnosis:: 26
Background:: Mark, a student, lives on his own. Ethnic background/nationality: White British.

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 years particularly in fact I was, there was a friend who I took issue with some of their behaviours and raised the issue with them, and they eventually said, “Oh well, you know, it is because I have Asperger's.” And I really over reacted I 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’t.” And 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 me.” And 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.

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Age at interview:: 65
Sex:: Male
Age at diagnosis:: 62
Background:: John, a former croupier, lives on his own and is unemployed. Ethnic background/nationality: White British.

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 roles… at 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 syndrome.” Ho! 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 confirm… she 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.

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Age at interview:: 26
Sex:: Male
Age at diagnosis:: 24
Background:: Sam is studying for a PhD. Ethnic background/nationality: White British

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 aut… well 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 never… I 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.

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Age at interview:: 33
Sex:: Male
Age at diagnosis:: 30
Background:: Peter lives on his own and works as a kitchen assistant. Ethnic background/nationality: White Scottish.

And when you started to find out what did you think?

The first thing was, the first thing that came into mind was am I going to die from it or something, because I didn’t know anything about it. I am like autism, what is autism? And Asperger's and that. What is Asperger's? [laughs] Would someone please, just like, for the first couple of weeks I was like all my problems are then mixed into this and I was like just going round in circles and my head was all over the place, especially with this court case and I was like mmm... I didn’t know who to turn to, I didn’t know who to speak to, but then I sat down with the psychologist who had diagnosed me, and he worked through everything piece by piece, explained everything, everything is okay, blah, blah blah. “You are going to be fine. You are slightly different from other people but that is good thing,” he said.

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Age at interview:: 37
Sex:: Male
Age at diagnosis:: 36
Background:: Damian is a student. He is single and has one child, aged 7. Ethnic background/nationality: British

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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Sex:: Male
Background:: Neil and Catherine live together. Ethnic background/nationality: White British.

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 the diagnosis. 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.

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Sex:: Male
Background:: Steve and his wife have one son, aged 9. Ethnic background/nationality: White British.

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, and and do something constructive really about it.

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Age at interview:: 17
Sex:: Male
Age at diagnosis:: 13
Background:: Duncan, 17, lives with his family. Ethnic background/nationality: White British.

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 more steady and you know make sure everything went right, I guess.

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Age at interview:: 58
Sex:: Male
Age at diagnosis:: 51
Background:: Richard, a computer programmer and Sue, a healthcare worker, have been married for over 30 years and have a large family. Ethnic background/nationality: White British.

Sue' Since the diagnosis yes. Since I have been able to say yes, he behaves like this …

Richard' Before that people would always think you were exaggerating?

Sue' People would think I was exaggerating or think I was just complaining, because it is very difficult for somebody outside of that sort of relationship to think, to understand – well I mean, I suppose what they would think, well if it is as bad that why is she still with him basically? You know if it upsets her that much why is she still there? And so I developed a … I just developed a shell round myself where I didn’t say anything about our relationship to people, even those people whom I considered friends, except for this particular friend who actually was in the home a lot with the children. She acted almost as a surrogate grandmother for the children. So she was in the home a lot so she knew what I was experiencing. She had seen it in action, you know.

But unless you see it in action, most people just can’t comprehend what it is that is going on. And it is almost, well it is, in a way it is an abusive relationship. Not a conscious one in the way that one would think, when you use that sort of term, but for example, I mean I am a health worker. I work in the health services and I could cringe. I did cringe when we had lectures about domestic abuse and things like that, you know, I just could feel myself withdrawing completely within myself because I could identify certain aspects of it. Not the physical abuse but the mental abuse of …

Richard' Abysmal neglect.

Sue' Yes, it is. Whereas when you talk about domestic abuse you tend to think that it is something conscious and systematic and … but I could very much identify with people in that situation.

Richard' This was one of the …

Sue' And that is another thing though too, in a church situation you don’t want to go up and start saying to people, well I feel as if I am in an abusive relationship.

Richard' I don’t think you would be allowed to say that.

Sue' Well it is not something that people would expect.

Richard' You didn’t say that.

Sue' That people expect from you. So for a lot of years I was living in a very unsupported situation. So again having the diagnosis was a help in that respect as well because then I could start saying, I am here with a disabled husband.

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Age at interview:: 39
Sex:: Male
Age at diagnosis:: 39
Background:: Tim is married and had two children. He works as an IT consultant. Ethnic background/nationality: White British

I think it were useful for me to know that it weren’t your fault, if you like. Because at times I used to go ‘why is he like that?’ And you know, he had this idea that maybe if I put a bit of pressure on him I might be able to change him a bit you know, but no, that clearly, clearly was never going to happen. And I think to know that you’ve just got to work with what’s there and you know… because we’ve had our difficult times haven’t we? There’ve been times when we’ve nearly thrown the towel in to be honest, but we’ve, we’ve sort of kept going haven’t we? And I think it’s just reaching a level of acceptance in us lives where this is how it is and you make the best of it. Whereas I spent many years, sort of fighting trying to change things, and make us lives different, but you know, this is what we’ve got and this is what it is, and it’s not that bad, if you just sort of find that level of acceptance and get on with it really.

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Age at interview:: 47
Sex:: Male
Age at diagnosis:: 45
Background:: John is single and an unemployed admin worker. Ethnic background/nationality: White mixed UK/Irish

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.

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Age at interview:: 33
Sex:: Male
Age at diagnosis:: 30
Background:: Peter lives on his own and works as a kitchen assistant. Ethnic background/nationality: White Scottish.

Trying to explain it to people again. I should get a tape recorder and say, “Listen to this” [laughs] because you don’t know how people are going to react. You don’t know if they are going to push you away or would they be interested to find out more or… that is probably the hardest part for me. Probably also to try and think of the people you want to tell, people you know you can trust so they don’t go around blabbing to everyone because I think… I still feel like… a wee bit of that is getting labelled. Just because I have got autism it doesn’t mean to say you should treat me any differently. I feel some people might just think oh he has got autism, or Asperger's, we had better treat him a bit better. I don’t want that. I just want to be treated the way everyone else gets treated.

If they are going to ask questions just ask me and I will see if I can answer them, just don’t kind of back off or don’t bring the subject, don’t bring up the subject, if you are not safe, if you don’t like bringing up the subject, don’t do it. But if you want to know more I will do my best to explain it to you. But I think it is telling people because you don’t know how they are going to react so.

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Age at interview:: 27
Sex:: Male
Age at diagnosis:: 26
Background:: Mark, a student, lives on his own. Ethnic background/nationality: White British.

Yes. I mean I think that certainly is the most positive outcome of it all - apart from my own sanity of course - is the fact that once you have this little magic piece of paper that says, yes, please, can you sort of treat this person a little differently. And to be honest most of the things the university are doing are all kind of really minor, but it is when you have a little piece of paper, you don’t feel like an idiot for going and asking, you know, “If I miss a couple of tutorials, instead of you just kind of not giving a toss, and ignoring it, you know, please do contact me. Please do, because, you know, if I start missing a couple, you know, then I might not go back, because once you miss a few, it makes it that much more difficult to sort of go in, and little things like sort of being picked on in tutorials. You know, asking the tutors sort of, “Please don’t pick on me, because I really, really won’t like it.”

If you don’t have something formal, you do feel, like a bit of an idiot for asking. You know, it just makes you feel so uncomfortable doing it, whereas if you do have this piece of paper you can contact the Disabilities Office, and, you know, if you sort of do feel, you know, you don’t feel you want to, sort of you have to contact this person or that person to, you know, deal with, you know the sort of trivialities of existence. And they can help with that, you know they can sort of send an email. Deal with some of these silly little things that I think particularly people with Asperger's, just really suck at dealing with. I mean they really do.

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Age at interview:: 22
Sex:: Female
Age at diagnosis:: 21
Background:: Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White

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.

Would it have helped you to be diagnosed much earlier in life?

Yes very much... I still feel I am bad and that I should try harder, do better, be good so that I don't get things wrong and that it is me being deliberately bad (as I was told for much of my life and punished for) this causes me so much fear and stress. I see now how much is done educationally for autism disorders and if it had been available when I was younger and I had been diagnosed it would have helped. (I did not learn to read till late and communication was very difficult at school so I was a target for bullies - I would spend all the time that I was not in class in the toilet and when I got older about 8 started to get into bulimia because they would force me to eat food that I did not like the texture of or muddled it up - before then was in different schools who did fussy eaters.

When I was in a later school they had school 'house' dining rooms and if for some reason you did not find a seat in your house you went to another house's dining room – so if anyone asked I said that is what I had done - no one ever checked.

My parents were always cross with me I tried so hard to follow the rules but I would get close to being good then the rules would seem to change... I am very rule based and things have to follow the rules or I get very confused. I always got the report ‘she could do better, she should concentrate and not daydream she should try to make friends and not be by herself’... again I would be punished for these things at home.

If I had known earlier then maybe someone would have helped to explain the rules and how to manage if they changed... I still do not manage and self harm and wander in and out of bulimia/anorexia though I have been given the rule that I must be a certain number on my mass so that helps because I have to follow the rule. I have also been given the rule that I can have a certain amount of self harm but there are things I must not do and I must say when but then getting an appointment is difficult because when I am to tell her sometimes she is not there so that breaks the rule but then they help me. Then keeping to the rules becomes very tiring and that sometimes causes overload and things get muddled - it would have been good to know earlier that I am not a bad and horrid and evil person.

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Age at interview:: 65
Sex:: Male
Age at diagnosis:: 62
Background:: John, a former croupier, lives on his own and is unemployed. Ethnic background/nationality: White British.

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 languages?” Or, “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 in City, 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 normal” - is the word. Its… but I wish I had known years ago

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Age at interview:: 21
Sex:: Male
Age at diagnosis:: 12
Background:: He has a degree in accountancy and is looking to get an apprenticeship in business administration. Ethnic background/nationality: White/British

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.

Parents share their feelings about their child being diagnosed with autism

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Paula felt 'incredible relief' to get the diagnosis as she had been questioning her parenting ability.

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Bobbi describes getting the diagnosis as 'light bulb moments going off all over the place'.

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Sandy read a leaflet and found that Joseph had about seven of the eight autism traits listed so was prepared to receive the diagnosis.

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Dot felt the diagnosis would make everyone take her seriously at last and when she got home phoned everyone to tell them the news.

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Carolann felt vindicated on receiving the diagnosis because she was not 'mad, bad or sad' and neither was her daughter.

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Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved that she 'was not mad'.

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Alison and Tony felt differently about the diagnosis; Tony says it was cold comfort, while Alison felt more emotional.

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Jane and Dan talk about feeling upset and frustrated about their son's diagnosis.

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Daniel describes how he felt when Jonathan was diagnosed.

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Joy found the period after getting the diagnosis confusing and found it too painful to discuss with people.

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Nicki struggled with feelings of guilt and anxiety about Tyler's future for 18 months after receiving the diagnosis.

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Tracy experienced 'waves of euphoria and fear' when her daughter was diagnosed and still feels her emotions are in turmoil over ten years later.

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Mary-Ann felt devastated when her son was diagnosed but came to recognise that what mattered most was for him to be happy.

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Christine didn't want to believe her son had autism because he had been misdiagnosed many years before.

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Sandy's two sons have very different personalities and she found getting the second diagnosis particularly upsetting.

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Age at interview:: 40
Sex:: Female
Background:: Paula, a specialist senior nurse practitioner and teacher, is married and has two sons aged 14 and 12. Ethnic background/nationality: White British.

The report from [doctor] I felt incredible relief because you know, if people tell you that you are a shit parent often enough you think you are. I mean I kind of knew that I wasn’t, you know, I don’t drink, I don’t smoke. I don’t take drugs. I don’t do any bad things. I always think about my kids. I always try and enable them. So I know that I am doing the right thing. But at the back of my mind I was thinking is it because of the divorce? Is it genetic? Is it me? Is it you know, what have I done wrong? Is it because I went to a wedding when I was pregnant with Alex and I drank? Is it that? Have they got fetal alcohol syndrome? Have they got this? You know you are forever sort of trying to justify your own existence really when you have kids with special needs. I think that is what it is all about really.

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Age at interview:: 38
Sex:: Female
Background:: Bobbi, a part time administrator, and her husband have two children; Jack aged 8 and Charlie aged 6. Ethnic background/nationality: White American.

So I think that when I realised that early on Charlie was unbelievably brilliant at numbers, really good at numbers, and had a real affection for languages that were ‘sing songy’. Things like that then, I don’t know just something snapped and I just thought ‘yes maybe’ and googled it and brought up a load of stuff. And I think it was through the National Autistic Society first that I learnt mainly about it. And a lot of things made a lot of sense, a lot of sense. And then to get the diagnosis for that one day with all the doctors there, it was like ping, ping, ping, like light bulb moments going off all over the place and it was a real relief to be honest with you, it really was, because for me as a mum it made me feel like I did understand my son. Because for a lot of years I didn’t feel like I did, you know, may be not years, but for a good space of time, I really didn’t think I understood him at all.

Well we were at the worst before this place. We were in a smaller flat and like I said he was smearing and things like that, I really didn’t think… I thought I was the worst mother on the face of the earth at that time. It was horrid you know. And to then feel like okay, no, it is not your fault and yes you are right, actually, you do understand your little boy. You are on the right track. It was like, oh thank you, you know, okay, it sort of re-affirms you as a mum again. You feel like okay I am on the right track. I may not be the best mum in the world but at least I am heading in the right direction.

And how did your partner feel when you got the diagnosis?

The same. Same. I mean David and I are unbelievably close. He was literally born a year and a day before me. We are like two peas in a pod as well. It is funny very, very similar, very different, he is very more… I am very outgoing, where he is very, very laid back. And everything that I sort of researched was, you know, either being passed on to him, or he was researching as well. And we were coming to each other and the end of the day and saying, “Well may be it is that. Or may be it is me.”

Oh your partner was …

Yes. Yes. We would come together. And he was like well may be it is this, or may be it is that, or may be it is the other thing. You know. And, and when we went to that, that session with all the doctors it was really good because we were on the same wavelength and they kept saying to us, “Well you are going to feel that it is a shock, after the diagnosis, you are going to feel a little bit…If you have any questions come to us.” And David and I were just like, “Actually we feel utter relief.” More like phew OK, we are on the right track, you know, we know now that everything we have been looking up, we know probably, well not as much as they did in any way, shape or form.

But you know at least we were at the beginning of totally understanding and we sort of accepted at that point that there was something going on with Charlie without a doubt. You know so there was no shock, there was no sadness, depression, or any of that after the diagnosis except for OK well now I have something to work for. Do you know what I mean?

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Age at interview:: 38
Sex:: Female
Background:: Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.

I think really if I think back I knew there was something not quite right from then. He started at the speech therapy and had been there a few weeks and one of the other mums, her child was in the speech therapy group as well. She said to me, “Do you think Joseph might be autistic”, and I said to her, “I have never even thought of it”. Which I hadn’t. I mean I thought obviously by then that with him being in speech therapy, I thought that there is something that is not right, may be he has got learning difficulties but autism is a condition I hadn’t considered at all.

And then I started looking into it after I spoke to this other mum and I picked a leaflet up from the library and I think there are about eight different sort of criteria, sort of traits of autism that are listed and then realised that Joseph had about seven of them. And I thought well he must be. So in a way when we actually got the diagnosis through from the paediatrician we kind of prepared ourselves for it anyway. We were quite expecting it I think and from then on that meant that we knew what we were dealing with. It must be so frustrating for people to not have a diagnosis for the child’s condition as well. Because I think if you haven’t you don’t really know what you are dealing with but as soon as you have you can start looking into how is it going to affect them. What can I do to help, how can I start to understand what they are doing, why are they doing things, why is Joseph, you know it is sort of why is Joseph spending hours just lining things up and it was just his way of getting a bit of order into his life I suppose.

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Age at interview:: 48
Sex:: Female
Background:: Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.

I went to see the doctor. She had an assistant with her so I could talk to her and she would be working with Joe at the side and they were trying to get him to do some art work but within that whole assessment which was just over an hour, I think, an hour and a half. She said, “Oh he is clearly Asperger's.” And I just wanted to jump up and kiss her because I thought, “Thank God for that.” I know … I thought it was Asperger's after doing all the reading and thought, “Oh at last.” So I said to her, “Well what happens now?” And she said, “Well he has got Asperger's, you know, go away think about it.” You know. I said, “Will you help me with the school because the school don’t believe there is anything wrong with me. They know he has got problems, but they haven’t got the right idea about him.” You know.

And she said, “Well go home, let it settle down and we will see him again in a month’s time or whatever.” And so that is what I did. But I was really, really happy. I rang everybody as soon as I got home. I felt like I had to prove that I wasn’t going mad, you know, people think that you are just making excuses. People think that you are not disciplinarian enough but one of the things that I really was glad about, I mean people have different views about smacking children and disciplining children and things, and I always really didn’t ever want to smack, but there were times when Joe was just like lying on the floor in the supermarket, because he wouldn’t come in, he didn’t like the lights, he didn’t like, there was lots of things, the noise, you just feel like smacking his legs or something but I didn’t obviously but I thought after that diagnosis thank goodness I didn’t do anything like that because the guilt of having punished him for doing something that he can’t help, I would have felt absolutely awful.

I mean I felt bad enough as it was because I didn’t know how to handle him, but then I thought well how would I know how to handle him? Babies aren’t born with instruction books. You don’t know how to look after them and I didn’t know anyone who had a child with Asperger's. So you know as well as for Joe because I thought this is good now. He will get help. I also thought, “Now people will take me seriously. I can explain to them what Asperger's is. I can explain to Joe what Asperger's is. We can move forward now. I can’t wait to get my hand on all them services.” [laughs] So I really celebrated that night.

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Sex:: Female
Background:: Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.

When you got the diagnosis can you remember how you felt?

Oh relief. Vindication because I had been banging on for fourteen and a half years that there was something wrong. And everybody I spoke to, literally everybody, said, “No Mrs Jackson, there is nothing wrong with your daughter. It is you. You are a bad parent. You know, you are letting her have too much freedom, you are not giving her sufficient structure, you know, it is down to you.” So when I got that I thought yippee. I am vindicated. I am not mad, bad and sad and nor is she. And I remember feeling such a… I almost felt like leaping for joy and telling the world that my daughter, she had got a medical condition. She was not a loony, weirdo nutter, you know with a mental health condition. She was a child who had a medical condition, like deafness or blindness or whatever but it just happened to be Asperger's syndrome.

The irony of it was, that when I did, I think I said earlier on, when I did actually go back to the Child and Family Consultation Services and say she has got a diagnosis of Asperger's, they didn’t believe me. The first thing they said was, “Oh she can’t have because she is too clever. Only people with learning disabilities are Asperger's syndrome.” That was the level of understanding, about eight or nine years ago here. That was the level and that was generally thought to be the case. But then of course I was able at that point to get involved with the children with learning disabilities, the children with disabilities team. I had to push very, very hard for that. And the reason why that happened was because well something very bad happened to Nita and they took her on the team and then later on she was transferred to the Mental Health Team for Adults, where she is now. Although bless ‘em they are lovely people but they have had no training in Asperger's and they freely admit they don’t know how to deal with Asperger's people and even if they did, the services which they would hope to provide aren’t there, because there are no resources, no money.

So the sort of things which would be like befriending, social skills training, independent living skills training, supported employment, all those sort of things that other people do and take for granted or are available to learning disabled groups, academic learning disabled groups are not available for Asperger's, because they don’t fulfil the criteria. They are above the magic 70 IQ marker. Therefore they fall off the scale, you know, and I keep trying to say to everybody I can; “There is no link between intellectual ability and daily life performance. Absolutely none.” I mean as I said, she could write you an essay on you know the Influence of Postmodernism in the Twentieth Century on whatever, but she can’t cook herself a meal. She can’t, she is dyspractic, she can’t do up her shoelaces, you know she can’t see the health, the muck and mess she lives in and if she does see it, it doesn’t bother her. So basic things which someone with an IQ below 70 would be able to do, some things like that she just can’t do, despite an incredibly high intellect and it is getting those two sides of the coin together for people to understand this is what Asperger's is. It is intellectual flair with very, very low daily performance. So that is the answer to that way. I felt vindicated yes.

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Age at interview:: 60
Sex:: Female
Background:: Daryll, a special needs teacher, is divorced with a son aged 22 and daughter aged 19. Ethnic background/nationality: White British

And then in year nine, I think, the Easter of year nine, I went in for a meeting with her SENCO and she turned, I was really up to it, I really couldn’t cope with it any more. I just had at Christmas, yes it would have been the Easter, at. At Christmas she had got down, because I had saved all their Lego and they had loads and loads of Lego, and she got it all down and it was all over her bedroom floor and it was still there and she would sit up there and build with it for hours.

And I mentioned this to the SENCO and I had already mentioned that she was very late with her speech. And she said, “Do you know what, I think [name of interviewee], I think she might have slight Asperger syndrome”. Now as I said, I am a special needs teacher. I qualified and did all that lot, but I had never heard of this condition. She said, “I have only met it once in a little boy, and he had it quite mildly, but..” she said. “I don’t know anything about it”.

So I immediately came back, ordered five books from Amazon and by the time she came back from France, I had read them all cover to cover and I said, “Tiffany, come upstairs”, because that was the only way to get her away from her brother, whose… they are either like that or they are like that. They are very, very close. And I said, “I think I know what is wrong with you.” So she came onto my bed, where she used to spend a lot of time. And I said, “Look I have bought all these books”. And she looked at me and I said, “Look I am going to read these bits and pieces which I have marked to her. I said does that sound familiar?” She said, “It is me.” So I said, “Yes, it is you”. And I had marked through the book C or T as according to which child it related to. She said, “Well I am not mad then?” I said, “No.” And her little face. She said, “I am not mad”. She kept saying all that evening, “I am not mad”.

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Age at interview:: 36
Sex:: Male
Background:: Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.

So what did you think when you were in the room with her and she told you?

Tony' She just confirmed what I knew I think. I knew anyway. I had known for years before…

Alison' He is not as emotional as I am.

Tony' No I had known, I just you know blimey you know the kid’s autistic.

Alison' In a way …

Tony' Get on with your life you know. Just help him.

Alison' It was nice to get a diagnosis so we could finally say, thank God for that. We know he has got this.

Tony' Yes that was sort of cold comfort wasn’t it. The fact that he was …

Alison' And then again I was a bit oh God, you know.

Tony' There was the fact that he had actually been diagnosed with having a condition where it is classed as a disability. Yes so, it was just, it just confirmed what I knew really. I just knew that. And we got the diagnosis and it was just confirmation of what I had been suspecting for a while anyway. So Alison was devastated when I told her but I was right you know we have not been told he has got leukaemia or cancer or anything like that you know. It is not like he is going to die tomorrow. So you just have to cut your cloth accordingly with life don’t you. You just get on with it and yes, he is autistic and you take that into account with everything that we do as a family.

Alison' It kind of started again from there didn’t it then? We kind of, you know, started anew then. Now is this is it now because before we had been away on holiday or we had been shopping and he would be having his little tantrums because he did use to have terrible tantrums didn’t he?

Tony' Yes. Yes he did.

Alison' And you could see people looking at us having you know… and thinking like I said, you know, bad mother, you know, horrible little child with a tantrum. Can’t she do something with him? He needs a goods smack sort of thing.

Tony' To which your response is, “Well I am glad you are perfect.”

Alison' And you know people would sort of do things and I would have to apologise to people and say to people, “Look I am sorry he has got learning difficulties.” But then all of a sudden I could say he was autistic, which was…not a lot of people understand what that means but at least you have got a diagnosis.

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Age at interview:: 26
Sex:: Male
Background:: Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.

Jane' Well it is really sort of frustrating because when we got the diagnosis and you start to read everything. When you start to read on the internet and you start to read all the books, it is really upsetting, because you think I don’t want my child to be like this. I don’t want my child to have this stigma attached and you feel very frustrated. And there are times now when I feel very frustrated and very upset because even though we want him to live a regular life, we know that he can’t. When people stop and stare in the street or he is having a tantrum and everybody is looking at you thinking, “Can’t you control that child?” and you just, you get really upset because it is not his fault that he is being like that.

And not a lot of people understand what autism is. If you explain to them, they do understand but it takes a lot of explanation and when you are very tired and you are coping with a child like he is, you do get very fraught and your emotions… and so sometimes you just can’t be bothered to [laughter in voice] tell everybody and you just think let them think it is a naughty child or….

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Sex:: Male
Background:: Daniel, a full time carer is separated from his wife and lives with his son, aged 13. Ethnic background/ethnicity: White British

And can you remember how you felt at that point?

Oh. It is not, when you get the diagnosis it is not such a shock, because you know that there is something wrong in a big way. You know what your son is like. You wouldn’t have been there if you didn’t know what he was like. In fact since his birth we have spent arguing with people there is something different about our son so to be told there is something different on the one hand it is actually a relief you know at last somebody has said, “Yes you have not been making this up just because you are proud. There is something different about your son.” So it was a great relief. And all the people that say, “Oh you are just proud.” You can then say, you know, “Told you so,” that sort of thing. So it is a relief.

But on the other hand it also comes as a shock, a complete shock. It is like you have gone from fighting to get people to believe to suddenly having to face up to the reality. And I think it is like a bereavement, it is just like a bereavement. It hurts. You know I think I was crying every day, whenever I was in my car, never in front of people, I was on my own surrounded by metal. I just cracked up every day for must have been near, or nearly a year and I still break down in tears every now and then if I stop to think about the reality of my son’s life and what may or may not lie ahead for him, as well as the hell that it has caused our lives. You know, that alone is enough, but that is nothing compared to what my son’s life might be like. And I still, when I get a moment alone, which is not very often, because I am with my son all the time, occasionally he goes with his mum somewhere and when she takes him off I just crack up quite often. You know just cry. I know it sounds stupid but the stress and strain you are under is so immense and you are fighting society as well. I mean that doesn’t help.

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Age at interview:: 48
Sex:: Female
Background:: Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British

So he wasn’t diagnosed by the education psychologist. He was diagnosed by the consultant child psychologist who was dealing with emotional and behavioural difficulties. And once that was done although we had a label… I think that from that point for quite a while, I was in a sort of bereavement process because obviously I had lost perhaps what I thought I had and I wasn’t sure what you were going to get [laughs]. But at the same time when I reflect now that is the same with any child. When the child arrives you don’t know what you have. You know what you would like you know what you think you might have, but you don’t actually know until the character comes out.

Do you know I can’t remember [laughs] I can’t remember. I suppose they, must have done. I mean I have had lots of information over the years from different organisations and professionals. I can just remember being in the consulting room and her telling my husband and I and I can remember getting in the car and saying, “When we get back,” because my parents were looking after my son that day, so that we could go to that appointment and saying, “I am not going to tell them.” And I realised later the reason that I couldn’t go in the house and say they have said it is so and so, he is autistic, is because I couldn’t bear people to be sorry for me. It was just too painful.

It was … there are some people I still can’t, I choose not discuss it with them, because some people feel too sorry for you and it is just absolutely dreadful. Now I don’t need people to be sorry about it but whether I feel that because we have really had some measure of, I suppose you would call it success, in that our son is coping out in the real world and yes, he struggles, and there will be a lot more struggles in as much as anything because he is now 13 and he is, you know, finding his feet and he is trying to be independent. I would say saying that as a parent of a 13-year-old boy anyway. But no, I think I went out and found the information. But whether that was because I knew how to do that I can’t remember [laughs].

Can you remember what went through your mind when she told you the diagnosis?

No. Apart from really I think I would have been surprised if she said it wasn’t that. I think by then we knew enough to know there was something wrong, that we were dealing with a complex problem. And it all pointed to it being autism. No I can’t …I think it was probably an awful lot of things. In some ways relief, like I say because we had a label and when you have got a label you can start to ask for things whereas like I say I know that professionals are loath to give labels in case it is the wrong label. But… it does make life easier.

And I think I mean I know I was upset because I suppose you don’t want it to be whatever. I didn’t want him to be anything because I didn’t really know anything very much about autism except the classical stereotypes of somebody who just sits in the corner and can’t function and is completely withdrawn into their own world, because you know, I now know that that is at one end of spectrum. And my son is a lot more at the other end. But… I think it was just a mixture. But probably relief in one sense and distress I would say.

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Age at interview:: 32
Sex:: Male
Background:: Nicki, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British

Mark' And with me it was more like take it on the chin. Deal with it.

Nicki' Yes. I struggled. I really struggled. I felt guilt. Should I have insisted on a Caesarean? Should I have let the labour go on for three days? I thought did I wash strawberries when I was pregnant? I ate brie, heavens was that it? Mark considered for a while that it might be the jab. And we were both really looking for something or someone to blame. As a mother, my own private thoughts were awful for a while. I thought, you know, how could I possibly exchange Tyler for a normal child? Is there a way I can do that? Extremes. Real extremes. And then feeling guilty because I had thought it and then being really desperate within myself thinking how can I have ever protect him? How can I make sure he grows into adulthood? Is he going to have an independent life? I don’t want a disabled child. I want a normal child. And all those emotions were an absolute roller coaster for me. And probably if I am honest lasted about eighteen months and when he was diagnosed I burst into tears and … but I knew that that was what the diagnosis was going to be. I knew it. We knew it.

Mark' I was kind of relieved when he was diagnosed I was kind of relieved because I knew he was going to get the help that he needed you know. Because it had been identified and I suppose the way things are and everything else I was relieved I suppose. And …

Nicki' The other option was a lot worse because they could have said it was unspecified learning difficulties. Where do you go with that? You know with autism, yes it is whole spectrum and yes, every child is different and there can be all sorts of traits of it that they display and you know it is complicated and it is difficult. But we knew what it was. And that is the better alternative we felt, then having something that was, we don’t quite know why Tyler is the way he is. You know we can’t put our fingers on it. So for us that was the trigger then to be able to get all sorts of help so we applied for Disability Living Allowance. We applied for all sorts of different types of help didn’t we?

Mark' Yes.

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Age at interview:: 40
Sex:: Female
Background:: Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.

Can you remember how you felt when you had it sort of confirmed?

It was a fifty fifty thing really sort of ‘oh at last, but oh my god’. It is sort of … it kept going over in my head, at last, oh my god, at last, oh my god and you sort of have waves of euphoria come up because at long last you know, that you are not a neurotic mother, you know there is something and that everything you have been saying there is some truth in it but then when you sort of get those feelings out then comes, ‘oh my God what now?’ feelings. I was scared. I was scared. You feel a failure because you think you have done it. And if you had done this, or if you done that, or … you know if I hadn’t worked right up until two weeks before I had her, or if I had ate more fruit, if I had done this, you go through this horrible, horrible process of guilt and even now twenty years on the guilt is still there because you still feel, just like a film you are watching this whole thing in front of you, a whole lifespan of somebody with this condition and you think they come from you so you should have done something to prevent that happening.

I am starting to accept there is nothing, the more I see now, the more medical advances and the scientists and more or less I am starting to realistically to believe ‘oh it is not my fault’ but you still have that bit inside you thinking ‘oh I could have done this’ or ‘I could have done that’. And then the process for me and I don’t know if it is the same for everybody is I went into overprotective mode. You know, and I sort of was hell bent on I was going to get what I want and I want it now sort of process that no doctor, or no headmaster or authority officer was going to tell me ‘no’, because I was full of anger and it was just like a process of so many emotions, anger, possessiveness. Thank God for that and it just goes over in circles, you get rid of one emotion and the next one comes and the next one and you seem to go back to the beginning and that first thought comes again, but after a few years it does subside. It is still there. I still feel guilty. I still feel angry. But whether I have learnt to control it or not show it or deal with it better, I don’t know. But a certain amount of anger because you do say, why me, why Nicola?

But the more you find out the more that you realise that it is one in five children so it isn’t only you, it is only Nicola. And you can’t say ‘why me, why Nicola?’, because there is so many more out there. And thankfully in our case Nicola is borderline; on the disorder spectrum she is mild to moderate. Whereas some of the children that Nicola has mixed with or I have come into contact through the years would be on the maximum top end of the scale and I don’t know. I just don’t know how I would have felt if it was that.

So lots of the time I lay there, I lay in bed and I am thinking ‘oh why me, why me, why Nicola’ and then I think ‘well it could always be worse’. So the emotions are still in turmoil. It is still up and down, up and down, good days, bad days and then now Nicola has got older and this is terrible, I shouldn’t say it, and I shouldn’t even feel it and I know that I shouldn’t feel it, but I think to myself, ‘oh my God this is the rest of my life?’ and how bad is that? A terrible thing to say because I shouldn’t feel it, but I do and I can’t help it. Some days I feel very angry because this is the rest of my life and there is never going to be a time when Nicola doesn’t need me.

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Age at interview:: 32
Sex:: Female
Background:: Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.

How did you feel when she said that to you?

Well at the time it was. It is quite hard to explain when she first said it, I was like okay, you know, because people say things and you go okay and then – and my brother was with me and my brother doesn’t really have much of an understanding of Arthur’s conditions. He hasn’t read any of the books. He thinks he knows a lot about Arthur. He hasn’t read any of the books and that and so I was glad that he was there and heard that because I kind of had felt Arthur’s behaviour was my fault. And I kind of felt and sometimes it did sort of did feel like my family said, its just because I don’t discipline him enough or you know, I haven’t brought him up right and you know, and so I was glad that he heard that bit.

It was afterwards when I was back at home on my own and thinking about it. First it was devastating because it was kind of like, I can’t make him better and it was really, really hard to accept that and it took quite a while, you know, because you do, it is I suppose kind of, kind of like a bereavement, you know I think you go through that, that denial, that okay, so what can I do to make it right? Okay if I do this, and do that and do that it will all be okay. But yes, I think it was that and then coming to that realisation myself that was important, or what is important is for Arthur to be happy, you know and he wasn’t happy in the mainstream school and he had lots of support. He had full time support. He had two different learning support assistants who were really good with him and I, yes, I could see that he wasn’t… he wasn’t in the right place and that there was nothing they could do about it, you know.

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Sex:: Female
Background:: Christine has two adopted children, the oldest, Brian, is 30 years old. She lives with Brian and Alice, her daughter's child. Ethnic background/nationality: White British.

And we went to see [psychologist] in June. So Brian had come home in December and by June I went to see this psychologist because he seemed to fit what they were saying about autism. But in many ways I didn’t want to admit that it could be, at that stage, because all the years of it not being but when I went to see [psychologist]. I suppose I may be a bit Asperger's because he came here and I went there, you know, I didn’t realise he did …. And I was waiting at his house and eventually we did meet up because he came later and I was still waiting at his house. I am very … you know I thought maybe he has broke down. And he spent a long time listening and observing Brian and after a couple of hours he said, and he had got various reports, he had got medical things, some that I had sent him I think and from then he said, “Well there is no doubt in my mind that Brian certainly is autistic with the Asperger's.” I said, “He can’t be. He can’t be.” And he said, “Yes.”

And from then I could ask [psychologist] questions like why does he do this, so why does he do that? And every Christmas he wants a watch, a bloody watch for Christmas I said every year it is the same. And you have got boxes of them, you know you don’t want them... That is Christmas. And I said, “You know, when I buy him things does he not want them?” And he said, “Well has he asked for them?” “No. But he would like them.” He said, “How do you know he would?” I said, “Well I thought he would.” And he said, “Well no, he doesn’t, does he?” He said, “He won’t say to you.”

And it was from then after that, after [psychologist], I saw him a couple of times. I found it extremely upsetting, I have got to admit I did because I saw the mistakes that had been made. The mistakes that even I, you know, that I had found this, I had done that. Why hadn’t a mother recognized what was wrong with her son? And then from the minute I found out about autism it became easier in other ways. I stopped saying to Brian, “Brian will you stop doing that with your hands,” because he can’t stop. Sometimes I will say to him, “Brian give it a rest will you. You are doing my head in.” And then he will say, “Oh sorry, mum.” But that was something that I wasn’t aware of. I did not know that Brian doesn’t understand everything I say to him and apparently he has got these safety words, ‘yes mum’, ‘no mum’ which doesn’t mean he has understood me but he looks like he has. So when ever anyone ever would say anything to him, he would say ‘yes’, and he would yes to anything, you know, he just. Because there are some words, if you say his name and say it sharply he will listen otherwise you know he switches off.

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Age at interview:: 38
Sex:: Female
Background:: Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.

And then Adam came along six months later and at Adam’s eight week check-up our health visitor sort of concentrated more on Joseph and lack of speech and by then he was two years old and not really sort of making any kind of noises at all. And she referred us to a paediatrician eventually who did diagnose autism, just before, …I think it was, no, it must have been about eighteen months he started the speech therapy and then saw a paediatrician at about just a month before his second birthday, he diagnosed autism. It was a big blow but at the same time we started looking into it and it did explain a number of the things that Joseph was doing, such as the constant video watching of Thomas the Tank Engine which I think really every sort of autistic parent experiences. Lining cars up, lining everything up, sorting out into colours and things like that. Never really took any notice of his baby brother at all, because Adam arrived at about the same time as Joseph was diagnosed.

Adam was totally, totally different, very different to Joseph. He was very into company, very smiley, a typical baby really. He didn’t sleep through the night, he wanted constant feeding and changing and generally being quite a pickle, totally the opposite to Joseph. And then one day when Adam was eighteen months old he picked up a pen and started doing this. And Joseph hadn’t done that for a good year and I did say to my husband, “I am absolutely convinced that Adam is autistic as well,” which was a big shock because that was the first autistic thing that he had done independently. He had jumped up and down and flapped when he got excited. But that was actually the first sort of really, I suppose, autistic trait that we got from Adam independently. I contacted our paediatrician who was absolutely fantastic and said, “Bring him in”. And unfortunately Adam was diagnosed as well not long after the eighteen month sort of thing. We were seen very quickly and that was a very big blow for us personally as a family because I think really we just thought we had a normal little boy and then all of a sudden he is autistic as well.

And the first thing that hits you is, is there something wrong with me? Can I have a normal child? The boys are still very, very different. It took me a good eighteen months I think. I almost went through a grieving because the little boy that I should have had felt as though he had been taken away and that was very hard to deal with actually. I did go through quite a down stage and I suppose even then we were just looking into autism. How it would affect the boys, trying to understand what was going through their heads. And sometimes you think you understand something and then they do something that you are totally not expecting which is, which is normal now I suppose [laughs].

Grandparents share their feelings about their grandchild's autism diagnosis

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Irene says 'You're always brave until someone says 'how are you?''

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Interview 7 describes her feelings about her grandson's diagnosis.

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Dorothy wanted to cry all the time and couldn't sleep. In the day time, she had to reflect on practical things like interventions and therapies.

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Brenda feels sad about her grandson's diagnosis and finds the reports she reads about him upsetting.

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Jan had experience of growing up with a disabled sibling and was aware of the 'sadness' parents' experience when they have a disabled child.

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Bryan was in denial for some months after his grandson's diagnosis and said he didn't understand very much about the condition.

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Janet said that some people were blasé about her second grandchild's diagnosis of autism and didn't realise that it was more upsetting than the first.

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Rebeccah started to think about 'the genetic component' to autism after her grandson's diagnosis.

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Moira thinks autism is in her genes and felt guilty for a long time.

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Helen was concerned about her younger grandchild who was one when his brother was diagnosed.

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Helen has a lot of unanswered questions about autism but thinks that the MMR 'was the final straw' for her grandson's body.

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Age at interview:: 61
Sex:: Female
Background:: Irene lives with her husband. They have three children and two grandchildren. She is a retired teacher. Ethnicity/nationality: White British.

And then the other person who really helped me, and I don’t suppose she’ll ever realise how much she helped me, was one of my friends, who I used to go, with her and her little girl, we used to go, walk down the road together to, you know, Bounce and Rhyme and all these things that mum’s do. And she was a speech and language therapist and I had asked her about, you know, my concerns, because she knew him and she saw him every day. And one day she just phoned me up and she said, “Irene I haven’t seen you out, and I know your daughter’s now taking my grandson out.”That’s okay, don’t worry. And she said, “What’s going on?” So I said, “Well you know, things have proceeded and as you may expect he has been referred and has now been diagnosed.” And she said, “How are you?” So of course, that’s fatal. You’re always brave, aren’t you, until someone says, “How are you?” And then of course I just started bawling on the phone. And she was round within ten minutes and despite the fact she had a young family herself. She helped me to say it was alright to grieve, at the diagnosis it was alright to grieve at not seeing him.

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Age at interview:: 63
Sex:: Female
Background:: Interview 7 is married and has two children.

Well at first I was sort of shocked, and I wasn’t totally sure that it was right, that they had it right. It was like a denial, you know, I wasn’t certain that they had got it right, and to be honest Ii didn’t know much about it. So I did lots of research on the internet and started reading up on it and then started to think of ways to help, because he was getting a little bit older then, and he wasn’t starting baby talk. So I then, found out, there was an American company who’d had some success with autistic children with a DVD, with pictures and sound to help them to learn to talk. So at the time she wouldn’t have been able to afford that. So I ordered them from America and then sent them to her. And it had no effect at all. But later on when he was older, she played them again and he started to take a bit of an interest because it showed some of his favourite animals. I think that for a long time I went through a phase of grieving really, you know, you don’t realise it but you go through a phase of grieving and then later on you start to accept it, that that’s basically how it happens.

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Age at interview:: 82
Sex:: Female
Background:: Dorothy is a retired teacher. She lives quite close to her daughter and two grandchildren. Ethnicity/nationality: White British.

And so your granddaughter was diagnosed first. Can you remember how you felt at that time?

I just wanted to cry all the time. I couldn’t sleep. I wrote poems about it and I found that was a way, a cathartic way of dealing with it. But, but I mean the sleeplessness and the writing poems and things and crying were of the night, as it were, and in the day we had to think what we were going to do. We had to learn how to adapt to it and to, and if we were going to use this therapy and spend money on this therapy we had to learn to do it too, so that we could do it for nothing. I mean, and as I say the principle is inclusion.

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Age at interview:: 56
Sex:: Female
Background:: Brenda has two daughters, two stepsons and four grandchildren. She lives with her partner and is a Student Services Team Leader. Ethnicity/nationality: White British.

Okay and how did you feel whenever you heard about his diagnosis?

Sad. [laughs] [tears in voice] I think for anybody, you know, if you see him, and know what he’s like, to actually know and read the report about, how he prefers adult contact, how he struggles to make relationships with other children, especially boys is sad, it is sad. And the fact that he started school with my other granddaughter from my, with my other daughter, his reliance on her, to be the one, you’d say he was the most confident but and she wasn’t, but he’d want to play with her and he hang in and want to be with her friends. So those sort of things are sad. And whereas we always thought he was quite bright, they, he’s been diagnosed as just being average.

But I mean his reading is above and beyond, you know, he has free reading, because he can read any words, but it’s the understanding of them. So, those sort of things. But you know, when you talk to him and what you get back, yes, it is upsetting to know that there is something wrong, and that’s with him for the rest of his life. So I do find that hard.

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Age at interview:: 59
Sex:: Female
Background:: Jan, a social care trainer and consultant, has two children and two grandsons aged 10 and 5. She lives with her husband. Ethnicity/nationality: White British.

I found it really difficult. I think because I’d grown up as a sibling, so I had a, as we were saying before we started the interview I had a brother, who had Down’s syndrome. He sadly died three years ago, but he was 64. That’s quite a good age for someone with Down’s syndrome and he had, for the era that he lived in, a reasonably good life. And I think if he lived now it would have been even better, but anyway.

So I’d grown up as a sibling, and in those days, even people with Down’s syndrome were you know, like sent to special schools or residential, in his case a residential school. So I had a brother than came in and out of my life and wasn’t there all the time. And I know from my parents, you know, that, I mean he was great, but the sadness of having a disabled child never really goes away, and it repeats itself again and again, at sort of key points of your life, and for me it was very difficult think. Oh I’d watched my parents go through that all through their lives, as much as we loved [Brother] and he was fantastic, it’s still not quite the same as having a so-called normal child. And now I was going to have to watch the same with my daughter, and I found that very difficult.

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Age at interview:: 72
Sex:: Male
Background:: Bryan and Moira are both retired. He is a former naval officer whilst Moira used to work part-time as a shop assistant. They have two children and three grandchildren. Ethnicity/nationality: White British.

How did I feel? Well, first of all, I guess, like many people, I was in denial. The first thing was no, okay, he’s a bit quiet. Yes he’s a bit boisterous and yes, maybe not as quick as some other children to, we saw that anyway. But on the other hand, look at how quickly he reads and how well he reads, and you know, he’s well in advance of other children. So yes, all the usual symptoms of denial. Then his behaviours, his odd behaviours became, began to develop, much more clearly. And I was forced, if you like, into a realisation that the problems were not simply of other, you know, other people’s imagination, there really was a problem.

But there was a period for six, seven months, something of that sort, I think, maybe a year, where I chose not to accept the diagnosis. Now, in my own defence, if I have to defend myself, I suppose there is, there is an element too, at that time, the very word autism, was not well understood and I certainly didn’t understand it. I had no understanding of how profound or otherwise it would be, or could be. And so it was easier, if you like, to walk away. Because he was just a little odd, that’s all there was to it. And then people started putting other labels on like Asperger's, which is where, I think, they started. I thought well yeah, okay I can live with that. That’s better than autism isn’t it, I think? And I was much more concerned about labels than I was about the reality of the condition.

And it took me a long time, a very long time to really come to what I think is a reasonable understanding now, although I have to say [Grandson] still puzzles me from time to time. He still throws a wobbly that I think “where did that come from?” And my understanding of his condition is far from perfect. But I am much more at ease with it now. [um] But still looking for ways of helping him. [um] And I’m not sure there are any actually and that’s the distressing part of it. [um] For me anyway, I think that’s the most distressing part of it.

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Age at interview:: 65
Sex:: Female
Background:: Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

But as the little, as my grandson got sort of developing and doing things. He did everything as a normal baby would at the time, and then she started to quirky little things. And we talked about it, but it was more really my sister-in-law, being, working as a health professional that highlighted things and, and put her onto people, that you know, might be able to give her advice and help. So initially that was… And then with the little girl, my granddaughter, she could see almost straight away, which was quite sad really, and people sort of think, well when you’ve gone through it with one child, it would be easier, but I think she was more devastated with the little girl because she hoped for the future for them, and it was just, knocked her for six a bit really.

And nobody really... people that she was not, not the health professionals that she deals with, but family and other people, just seemed a bit blasé about the whole thing, ‘oh well, you know, you know what to do. You know what’s going on now, you know, it should be easier this time.’

But she was just devastated because two children she had, and they both had this disability. But… and when [granddaughter] got diagnosed that was when she just decided to get all the information and any help that she could get.

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Age at interview:: 64
Sex:: Female
Background:: Rebeccah is a retired charity consultant. She lives with her husband and has two sons and two grandchildren. Ethnicity/nationality: White British.

And how did you feel about the time that you found out about the diagnosis?

Initially... well obviously it was a shock. But I mean I think in a way it’s a relief by the time you find out, because, you know, you have been aware that things are different, and you can move forward, you can find out what to do. So I, I was terrible sorry. I mean terribly sorry. But I was pleased that we could move forward.

I then obviously thought well where’s it come from because it knew it had a, there was genetic component, and I could see it in, there was an occurrence in my daughter-in-law’s family, so I could see it there, and then I began to realise that in my husband’s family there’s an autistic child. And also one with ADHD or whatever it is. It’s the same spectrum isn’t it? So I realised that there were these two families that had come together. But then... it is like, you know, my grandparents were cousins. We all got short sight [laughs] and in some cases ginger hair. But we’re back to what I always say. It is as it is. You can’t change things. But I was very sorry, yes, very sad.

And I think, I’ve become more optimistic. My daughter-in-law does a jolly good job of making sure he gets the very best, you know, that’s going for him. And you know, she’s on the ball the whole time. Very much on the ball, and we are in there supporting her. So he’ll get the best possible chance in life and that’s all that anyone can ask for.

And even with that, you know, I’ve recently been to, you go to school reunions where, and there were these brilliant shining stars who end up doing quite mundane things, and there were people who were absolute terrors who did nothing who end up sort of internationally famous. So, you know, none of us know really what the world holds for us, until we’re in our, I think in our mid twenties and we begin to use the skills we have or make a decision that actually we don’t want to use those skills that they, you know, we were happy doing something different.

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Age at interview:: 72
Sex:: Male
Background:: Bryan and Moira are both retired. He is a former naval officer whilst Moira used to work part-time as a shop assistant. They have two children and three grandchildren. Ethnicity/nationality: White British.

But one of the main things with [Grandson’s name] at the beginning was the coming to terms with the fact and the guilt that you feel when he was diagnosed.

And the whole family went through, as to well people say you try to pretend it’s not there to begin with. And then when you’re sort of faced with it, you start feeling somehow or other it’s genetically your fault. At least I did. I think I was the one that suffered most from that and I was quite sure that it was somehow my fault. My daughter tells me it’s idiotic, but there you go [laughs].

No, I just felt guilty about it for a long time. My daughter said, she’s done much more research than we have, that I think it’s a fairly natural that parents to feel guilt. I don’t see why grandparents shouldn’t as well [laughs]. You know, I think that you think somehow or other it’s your fault somewhere. I think that’s a fairly natural reaction. It takes a while to get over. You have to learn to live with it. And as he kept telling me at the time, that [Grandson’s name] was still [Grandson’s name] [laughs]. Even with a tag.

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Age at interview:: 57
Sex:: Female
Background:: Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

There was also then the concern my daughter had because her second child was not yet at the age the first one was when he was diagnosed. So she’s starting to look to see every little quirk he had. Is he, is he autistic? And then she had, she had wanted to have more children. So one of the issues that came up for them was, would they go ahead and have a third child? And they talked about it in the family and of course there were reasons not to and reasons to. And the reasons not to would be, well if it’s another boy there’s a high chance that he could be autistic. But that if it was a girl it would be a high chance that she wouldn’t be. And it would mean that sibling number two had got a normal sibling to live with, which longer term meant that sibling number two would not have all the burden of the disabled child falling on his shoulders. There would be two siblings to look after the older one should anything happen to mum and dad. So there was lots of reasons to and not to.

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Age at interview:: 57
Sex:: Female
Background:: Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

He’s very beautiful to look at, like a lot of autistic children are. And I suppose I look at him and think, why? You know, what’s, what’s happened? And I can understand why my daughter still has a bit question mark in her head about the MMR. Now I’ve read lots of research about it, and I know that everybody says it’s, it’s not responsible, but I’m still not completely convinced that for certain children, and there might only be the most miniscule proportion of children in the entire world but that to him the MMR was the final straw for his body. And I’m not saying that for other children of course it’s perfectly alright and they endure it and they’re fine and it doesn’t have any effect on them. But we are complex organisms and who’s to say that for him this wasn’t an assault too many. And so you’ll never ever quite convince me that for him, the MMR wasn’t just the last straw for his body.

I think he probably had autistic traits. I think he probably has got some genetic thing going on, and I think that because there are some traits running down, certainly the one side of the family, but never manifested before. There’s no history of autism in our family anywhere. I suppose… so I had those issues.

I also had these issues about in the [area] here where we live, there are huge numbers of autistic children. What’s that about? Because this is an extraordinary phenomenon going on here. Now, is it that the genetics of parents who produce these children can get jobs which they wouldn’t have got years ago, but they can do these jobs, high functioning Asperger's, high functioning autistics. They’re working in the computer industry. They’re terribly solitary. They can work without too many people around them. Do those kinds of jobs of which there are plenty in this area, is that what’s driving it? Or is there something environmental going on?

And the rate of autism increase seems so huge to me that it seems to defy a normal genetic problem. It’s just too many. It just doesn’t make any sense. I’ve got lots of questions in my head, coming out from relating to him.

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