
Feelings about diagnosis
- Age at interview:
- 28
- Sex:
- Female
- Age at diagnosis:
- 3
- Background:
- Alex is unemployed and single. Ethnic background/nationality: British
- Age at interview:
- 22
- Sex:
- Male
- Age at diagnosis:
- 2
- Background:
- Richard is 22 years old, single and unemployed.
- Age at interview:
- 22
- Sex:
- Male
- Age at diagnosis:
- 2
- Background:
- Richard is 22 years old, single and unemployed.
- Age at interview:
- 22
- Sex:
- Male
- Age at diagnosis:
- 12
- Background:
- James is a university student. Ethnic background/nationality: White Scottish
- 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.
- 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.
- Age at interview:
- 27
- Sex:
- Male
- Age at diagnosis:
- 26
- Background:
- Mark, a student, lives on his own. Ethnic background/nationality: White British.
- 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, 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.
- 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.
- 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.
- 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
- Sex:
- Male
- Background:
- Neil and Catherine live together. Ethnic background/nationality: White British.
- 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?
- Age at interview:
- 17
- Sex:
- Male
- Age at diagnosis:
- 13
- Background:
- Duncan, 17, lives with his family. Ethnic background/nationality: White British.
- 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.
- 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.
- 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
- 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.
- Age at interview:
- 27
- Sex:
- Male
- Age at diagnosis:
- 26
- Background:
- Mark, a student, lives on his own. Ethnic background/nationality: White British.
- 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?
- 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.
- 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
- 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.
- 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.
- 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.
- 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.
- 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?
- 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
- 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?
- 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.
- 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
- Age at interview:
- 48
- Sex:
- Female
- Background:
- Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British
- 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
- Age at interview:
- 40
- Sex:
- Female
- Background:
- Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Age at interview:
- 65
- Sex:
- Female
- Background:
- Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.
- 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.
- 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.
- 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.
- 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.