A-Z

Life on the Autism Spectrum

Feelings about being diagnosed with autism

“I’d rather be aspie than something unknown”
The age at which people are diagnosed with autism varies. Some people we spoke with were diagnosed as children, others as adults.  Feelings about diagnosis also varied considerably; some were very happy and reassured to receive a diagnosis while others were upset, shocked or surprised.

People diagnosed in childhood often remembered little about the diagnosis.

 

the diagnosis didn't get Alex sweets, drinks or toys so didn't interest her.

the diagnosis didn't get Alex sweets, drinks or toys so didn't interest her.

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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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.
 
 

Richard didn't know what autism meant until later in his life.

Richard didn't know what autism meant until later in his life.

Age at interview: 22
Sex: Male
Age at diagnosis: 2
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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.
 
 

James felt very bad about himself when he was diagnosed during secondary school. He said it was ...

James felt very bad about himself when he was diagnosed during secondary school. He said it was ...

Age at interview: 22
Sex: Male
Age at diagnosis: 12
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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.

Most of the people we talked with felt relieved to get the diagnosis of autism or Asperger syndrome. Mary said it was reassuring to have “validation” from health professionals, Oliver said the diagnosis gave him “more definition” while Tim said it gave him “peace of mind”. Some people thought that not getting a diagnosis would leave them worrying about what was wrong with them. Russell found that people with autism share a lot of intellectual topics of interest.

 

Daniel likes having Asperger syndrome and describes it as being 'like a terminator with feelings'.

Daniel likes having Asperger syndrome and describes it as being 'like a terminator with feelings'.

Age at interview: 32
Sex: Male
Age at diagnosis: 23
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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.

As one person described; “I am like different, but in a good way” while Debbie said that day she got the diagnosis as the best day of her and her mother’s lives.

 

Laurie said that if she hadn't had the diagnosis of Asperger syndrome she would have continued to...

Laurie said that if she hadn't had the diagnosis of Asperger syndrome she would have continued to...

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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.
 

Mary worried about having a personality disorder and was relieved to be diagnosed with Asperger...

Mary worried about having a personality disorder and was relieved to be diagnosed with Asperger...

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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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.

 

Mark worried about not being diagnosed and felt that he needed the diagnosis for his own...

Mark worried about not being diagnosed and felt that he needed the diagnosis for his own...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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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.
For many people diagnosed with Asperger syndrome, this was not a negative label.
 

John was pleased that the psychologist understood him and how 'it just fitted into place'.

John was pleased that the psychologist understood him and how 'it just fitted into place'.

Age at interview: 65
Sex: Male
Age at diagnosis: 62
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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.
 

Miranda was pleased to get answers even though she was over 40 when she was diagnosed.

Miranda was pleased to get answers even though she was over 40 when she was diagnosed.

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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. 

A few people found the diagnosis difficult to accept or understand initially and a few were not relieved to be diagnosed.  Russell said that getting the diagnosis, didn’t help him to know where he came on the spectrum.
 

Being autistic has ruined Sam's life and he can think of little positive about it.

Being autistic has ruined Sam's life and he can think of little positive about it.

Age at interview: 26
Sex: Male
Age at diagnosis: 24
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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.

 

Peter knew nothing about Asperger syndrome when he was diagnosed so his first concern was 'was I...

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Peter knew nothing about Asperger syndrome when he was diagnosed so his first concern was 'was I...

Age at interview: 33
Sex: Male
Age at diagnosis: 30
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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.
 

John L found having to rethink his past difficult after diagnosis and he went through a period of grief and understanding.

John L found having to rethink his past difficult after diagnosis and he went through a period of grief and understanding.

Age at interview: 39
Sex: Male
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I think that it actually. Well it actually meant a lot of work in some ways because you actually have to rethink your past. So in actual fact it actually sort of made me sort of, sort of go through a sort of more depressed period. And actually made me sort of insular to myself which meant, that's not generally very good anyway. So, because I have had sort of depressive episodes. It's a case of looking at how, looking at the past, and also you have to sort of go through a period of understanding but also going through a period of grief, as well. Because you have to sort of give up some stories, have to give up some ideas, and you have to sort of reimagine the past. So it actually takes up quite a bit of energy. It's like a…, it also the diagnosis wasn't that comfortable to accept, initially. So I think it took me about two or three years to really feel sort of comfortable with that. So, you know, it wasn’t… so it was definitely, definitely a process, and it's definitely a process that required a lot of internal introspection. So that sort of generates its own issues, if you go in yourself. You know, there's quite a lot of darkness, and you wonder, and part of me now is that, you know, I can accept that I have those dark parts of me, but that's okay, they're just part of me, they're not the whole, the whole spectrum of my personality, or who I am, they're just parts of what, what is my, my personality and my, my condition. 
Harriet felt both happy and sad to get the diagnosis;

"Sad that I would never be part of a world I spent so long being on the outside of. I used to think if I tried just a bit harder I could belong and be accepted – it does look good sometimes your world. To be able to laugh with different people, find things to talk about. Happy that I could stop trying so hard because I would never get there.  That I could now say, please stop punishing me I am trying as hard as I can – there is a reason I cannot be what you want. But in saying that, there is a great pain and loneliness and black hole."

Vicky wished she had not been diagnosed because it made it difficult for her to get a job, but she felt it allowed her to access support. John L, after a period of rethinking his past, found he was less angry as a person and has accepted himself a bit more. He’s been able to break the “pattern of behaviour or anger, action, reaction, depression”. Paul I said he felt (understandable) anger and some bitterness about wasted opportunities after being diagnosed aged 24 but got over it in a year and a half.

 

Damian was upset when he was first diagnosed because of the labels he'd been given in the past.

Damian was upset when he was first diagnosed because of the labels he'd been given in the past.

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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So when I actually was diagnosed it was kind of I knew what was coming in a way and it didn’t affect me very much. I was upset at the time, when I first read these accounts, because it kind of hits you very hard and quickly, that sudden realisation. Because, people had given me different kind of labels in the past or described my behaviour in not so nice ways, and I struggled to cope with various things socially, and it was giving a bit of an explanation to that.  But, it was also a good thing as well in the long run because for years I thought I was this kind of uniquely different person, you know, and I was quite isolated and I had all these abilities and talents for things but - and found some things a lot easier than other people - yet, other things, I was, which I was expected to be good at, I wasn’t.
 
So anyway it kind of was a much clearer name for it than I’d had previously, and realising that some of the people I’ve been friends with over the years in a sense were probably like me and there was a few people like me out there [laughs]. And in a sense it gave me more motivation to say that, because I don’t see it as a disorder or inferior. I see it as sort of me, you know, just different. So I want to say that to other people like and help other people who are, think in this odd ball way and help others. It’s given me a lot of focus, particularly with my son being autistic as well. So… I brought things together a bit in my mind, as I say gives a name to it.
 
 

Catherine was worried before getting the diagnosis but mostly she felt relief at no longer having...

Catherine was worried before getting the diagnosis but mostly she felt relief at no longer having...

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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.
“I understand now why I do those things”
Getting the diagnosis encouraged some people to read about autism and, in turn, this helped them to make more sense of their lives and the difficulties they had experienced.  Michael read books about body language and learned to make eye contact with people.  While another man described getting the diagnosis as life changing;

Just generally knowing what I have got, has made all the difference to me because there is just an excuse, a reason why, you know, if I feel bad in a situation now, I know how to deal with it better.  I know why I feel like that – it’s not that I am just randomly panicking for no reason.

 

Steven viewed the diagnosis as a starting point for him to say 'Well, yes, that is me, I...

Steven viewed the diagnosis as a starting point for him to say 'Well, yes, that is me, I...

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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.
 

Duncan felt pleased to get the diagnosis because 'it put a lot of things into place and answered...

Duncan felt pleased to get the diagnosis because 'it put a lot of things into place and answered...

Age at interview: 17
Sex: Male
Age at diagnosis: 13
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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.
 

Sue finds it easier to interpret some of Richard's behaviour as an aspect of his Asperger...

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Sue finds it easier to interpret some of Richard's behaviour as an aspect of his Asperger...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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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.
 

Julie found it 'useful to know' that her husband was autistic so she could change her...

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Julie found it 'useful to know' that her husband was autistic so she could change her...

Age at interview: 39
Sex: Male
Age at diagnosis: 39
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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.

Getting the diagnosis led some people to have expectations about support and understanding although this was not always forthcoming.
 

John was pleased to be diagnosed but was left with the same underlying problems in his life.

John was pleased to be diagnosed but was left with the same underlying problems in his life.

Age at interview: 47
Sex: Male
Age at diagnosis: 45
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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.
 
 

Peter finds telling people about Asperger syndrome hard to deal with because he is never sure...

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Peter finds telling people about Asperger syndrome hard to deal with because he is never sure...

Age at interview: 33
Sex: Male
Age at diagnosis: 30
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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.
Debbie said that she had expected friends to understand but they thought she would be able to change now she knew what the problem was.  A few people were verbally given the diagnosis but had nothing written down which was a problem when they wanted to access support.
 

For Mark the diagnosis means a 'little magic piece of paper that says can you treat this person a...

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For Mark the diagnosis means a 'little magic piece of paper that says can you treat this person a...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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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.
 

If Mary hadn't been diagnosed, she wouldn't be seeing a support worker who understood her.

If Mary hadn't been diagnosed, she wouldn't be seeing a support worker who understood her.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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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. 

Gail wanted a diagnosis so that she could access support at college, but she’d known she had Asperger syndrome for years and didn’t feel she needed a diagnosis. Once she had the diagnosis, she was glad because before this, when she said she thought she had Asperger's, other people were likely to think her weird for claiming it.

Looking back
Although Leo Kanner and Hans Asperger both identified what became known as the autism spectrum in the 1940’s, it was not until several decades later that understandings of autism and the diagnosis of autism spectrum conditions became more common.  Some people who were diagnosed in their middle age or older, talked about how much easier their lives would have been if they had been diagnosed much earlier. They felt that they could have been offered support at school and developed better self-esteem.

 

Had Harriet been diagnosed as a child, she wouldn't have felt that she was 'a bad and horrid and...

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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.
 

John feels a childhood diagnosis would have changed his life.

John feels a childhood diagnosis would have changed his life.

Age at interview: 65
Sex: Male
Age at diagnosis: 62
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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

Others had mixed feelings about the timing of their diagnosis. Gail, for example, thinks that she would have limited her opportunities if she had been diagnosed earlier in her life.
 

Russell thinks the diagnosis has 'created a block on his normal behaviour' but also explains some...

Russell thinks the diagnosis has 'created a block on his normal behaviour' but also explains some...

Age at interview: 21
Sex: Male
Age at diagnosis: 12
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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.
 

Last reviewed July 2016.
Last updated July 2016.

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