Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White
Yes, my parents. Well my parents, I think, they do try, yes, sometimes they’re not always very helpful, but I think my parents don’t always really understand all the time my problems. I mean they know, you know, they know all about my problems. It’s my parents how first, you know, kind of, you know, queried whether I, you know, thought that I might have Asperger's before I was even diagnosed. So my parents do know a lot about, a lot about my problems and stuff. But, but, yes, okay, I wouldn’t say they’re that clued up on how to deal with them all the time really.
Have you got any brothers or sisters?
Yes. I’ve got a younger brother whose 20, coming on 21 this year. He’s just finished university. He went to the same university as I did doing English. He hasn’t got Asperger's. He’s got a girlfriend. So he’s different to me in the sense he can relate to people more than I can. I mean I would say we do have similarities and I don’t know. I mean they often say well how is it caused. I do often wonder how is it caused. I think it’s probably genetic. I think more it’s the traits that are inherited and then some people just get them more extreme.
A few people reflected on how difficult they had probably been as children or adolescents and how this had affected their family relationships. A couple of people, diagnosed in adulthood, hadn’t discussed their diagnosis with their families.
Sam is studying for a PhD. Ethnic background/nationality: White British
Oh indeed. My family do know about my diagnosis, but it probably helps. I get the impression I was a difficult child, especially from about the age of 15 onwards I was rather difficult to deal with, I suppose they thought I was just being a stereotypical teenager. But just to a rather extreme degree, and perhaps to a degree I was. But also, to a degree I wasn’t, because I generally couldn’t cope with life. I was genuinely sort of struggling. And I admit this sort of perhaps continued on, later on in life, but, well basically when I was 17, I stopped talking to everyone because I didn’t... I was getting nothing from them. And a part of that was being cold and callous and calculating as I am, I sort of stopped talking to my parents which admittedly living with them at the same time was rather difficult, it was rather a flawed strategy I don’t know what I was doing but, suffice to say I gave it a go, and once you’ve gone to that stage, where you normally recognise someone as your parents as it were, and that sort of cold heartedness, it’s difficult to go back.
It’s been a long learning process, we’re talking a good, oh dear, nine years ago now since this happened, and it’s been a long learning process, and it’s taken three or four years, in the last say two or three years at least anyway, I have been much more… I can talk to them much easier and it’s been much more closer with them which is all fine. And also them knowing I’m autistic, as they’ve done for the last three years now, had probably makes things a lot easier for them as well, knowing why I am necessarily, I don’t know, intolerant of them. I’m not very tolerant of anyone to be honest, but when it comes to my parents, I can get away with it more, I suppose because that’s just the way parents are.
Not feeling understood or feeling very different to family members was discussed by some people.
Tim is married and had two children. He works as an IT consultant. Ethnic background/nationality: White British
Julie' Yes. But I think from a family point of view that’s been difficult as well hasn’t it. My family don’t always know how to take him. He very much will speak what he’s thinking at the time. And not always, because he can’t read other people’s thoughts and other people’s feelings, sometimes he might say the wrong thing, which other people that don’t know him can take offence at and I think you’re quite aware of that aren’t you, which makes you uncomfortable in situations. So he’ll avoid like family parties and family holidays or anything like that.
You know, if my mum rings up and says, “Oh we’re all going out for a meal on Saturday.” Straight away I think, oh no, you know, because I know he’ll either not want to go or he’ll be anxious until, until it’s over.
Tim' We do have a bit of history there you know with me having upset your lot more don’t we.
Julie' Yes, there’s been a few rifts. My family think that Tim thinks they’re stupid. Tim is very intelligent, but again, because he talks about, he talks at quite an intellectual level if you like, and I think sometimes he doesn’t always realise. He don’t bring that down to, to the level that other people needs sometimes, and he can come across a bit, sometimes a little bit arrogant can’t it? And people don’t always know how to take that.
I think with my mum and dad, they know that there’s a problem and they accept that there’s a problem. And they’ll say all the right things, but then they’re happy just to let me get on with it. They don’t really want to be that involved. Me mum’ll have the kids to help me out on the odd occasion, but she’ll only have one at a time. She can’t with them both at the same time. And you know, I’ll go to her and say that, “I’m having a bad time mum.” You know, when will it be about me for a while, and I just sometimes don’t understand, think they understanding just how hard it is. Straight away, she’ll say, “Oh I know life’s hard in’it. I’ve got to the hospital next week.” You know, and sometimes you don’t feel like you get that … they’ll say the right things, but I think they’re really in tune with it. And they don’t have awful lot directly to do with kids do they?
But sometimes feel that our family they do judge us a bit don’t they? Whereas your mum and dad to some extent are quite the opposite. They’ll do anything for us on a practical level. They’ll have the kids, they’ll do whatever. Anything we ask them, never too much trouble. But at the same time, the, autism word is very taboo, you know. If Jack mentions his Asperger's at Nana, it’s “shut up. We don’t talk about things like this. It’s not nice.” And they’re very much, they wouldn’t accept.
I think because they had Jack, Tim as a child, to them it’s normal. They’ve never known any different.
Well, I didn’t have an easy childhood because my dad, well, it includes my brother as well, because my brother is ten years older than me, and me dad was a bit, harsh, because my dad was very, very old school because he thought that women shouldn’t have a career. They shouldn’t drive cars, they should stay at home and look after their house and home.
So most of the time I found myself fighting against my dad when he was alive, because he wouldn’t let me do things. He was very hard on me. I never got encouraged to do things. I never got encouraged do well at school. I was never encouraged to take my driving, although I did go on to drive a car, and I did go on to pass it first time, although I haven’t done a lot of driving since I did pass because dad didn’t agree with it. And of course then my brother didn’t help as well, because my brother, he was very much the same, because he didn’t have any other friends
I think when I was having the diagnosis, the doctor seemed to think that my dad and my brother may have probably similar traits as well because they didn’t have a lot of friends and my brother didn’t have any friends other than my dad.
Some people had very close family and talked about feeling safe within the family home. Christopher, for example, has a very large, close family that he is very protective of.
Oliver is a student and lives with his partner Suzie. Ethnic background/nationality: White British
What do you think of having a brother and a mother who’s also on the spectrum and a sister who isn’t?
Well I, it’s kind of just, well to me it’s normal, because that’s the way really it’s always been and it’s like they’ve both said before it doesn’t change who you are. It is who you are that’s what, that’s your normal, that’s what you’re used to. And I, I enjoy it. I think we’re as a family, we’re a lot more free. There’s a lot more free thought within our little coven, I don’t know what you might call it, within our little family there’s a lot more free thought. There’s a lot more free speech. We are a lot open and I think because of that there’s a lot less stress, it’s a very easy going family. We’re not really concerned about what people think about us and how we come across as a family. ‘Are we going look bad to the neighbours?’ and things like this. Before, because mum and [brother’s name] were diagnosed and that did, it gave me a lot more motivation to get the diagnosis. But as far as [sister’s name] goes, I do feel as though she sometimes feels quite left out, because it has occasionally been a point of frustration for her.
“We have our moments and growing up we’d fight a lot”
Some people felt that their siblings were the opposite to them. Damian, for example, describes his brother as “very zappy” and opposite to him in some ways, but similar in others. Several people didn’t get on with their siblings when they were younger but had grown closer in adulthood.
One woman summarised her relationship with her two siblings:
“I just don’t relate, and I never have related to [older sister]. It was always as a kid I just have not been able to. She would learn all the pop music because she wanted to fit in everyone. She would want to wear the fashionable clothes. She would be embarrassed that, you know, she had weird sisters. And so I get on really, really well with my youngest sister.”
“It’s like the blind leading the blind”
A few people we talked with had children and, in some cases, they had children on the spectrum, or suspected their children may be on the spectrum. One couple, for example, had several children, one of them with Asperger syndrome.
When did you find out (how old were you?) and what did your family think about it?
I was about 39 I think - I am not quite sure - My parents were dead by then but my children were not too bothered as it did not make any difference to them as they had grown up knowing me as me. The eldest knew that there were things I did not do but he sort of told me what to do and when and when he left home for uni there was another child who took over the role. When I spoke to the eldest a little while ago I think he had thought about it more and he was very surprised about the things I find very hard but when I said well that is why you did x and x he said he just did them because it seemed natural and not out of the ordinary - he always was and still is (even though he is many miles away) very protective without being dictatorial - we can argue and then laugh and he still likes doing 'silly things' like water fights and climbing rocks and scrabbling up hills and things like that just to see the view and we both love computers and science and care about the beauty in the environment like the clouds moving across the sky or a dragon fly colours.
Though now looking back (he said) he could see where he covered for me but at the time he was not aware of it. The child/children who help me now have far more idea of where I need help because now it has a name I can say 'help I cannot do that' like shopping, people at school, strange places etc.... before it would have to be ‘oh I can't carry things’, you have to be there, you can read a map and so on.
I spent my life being so frightened that someone would find out and take the children away from me because I was a bad mother because I was relying on them so much - I thought that at any moment they would be a knock on the door. But I am very scared when they leave as I will then be on my own - I have never been on my own. It has been parents-from their house to husband and children - then children and me.
Parents said little about having a child or children on the spectrum. Autism was part of their family life and, in some ways, was unremarkable. The parents on the spectrum shared an understanding of different aspects of life with their children. One father and son, for example, shared a dislike of storms and both pace around the house.
Damian is a student. He is single and has one child, aged 7. Ethnic background/nationality: British
And what about living with your son?
Brilliant, yes, it’s the one relationship that works come to think of it, in the sense I don’t even see that as a relationship. I didn’t even mention it. We’re that close in a way. Best thing ever I’ve found. Probably the hardest too but he’s brought a lot of joy to my life, because he’s a very giggly little thing. Happy. He’s a lot like me with less words in a way and a bit blunter sometimes. A kind of more extreme version I suppose [laughs].
How long has he lived with you?
Only three years. His mum has him at weekends. She has her own difficulties and things and is struggling to cope and stuff. But she’s doing well now, and that so yes, bit of an oddball bunch [laughs]. It’s worked out well though, he has a good relationship with his mum and we still spend good time with each other.
I’m good with the whole school routine. I think he likes that, because we both live by that kind of day to day routine a lot … he knows where he is with me. I’ve more on a wavelength in a sense with him, than probably any one even though he doesn’t really talk. He has sort of one and two words. Sort grunts most of the time. ‘Hungry’ [laughs]. So there’s that instinctive thing with me and him, you know, and we just kind of understand each other in a weird way. And I think that’s the main focus of my life. I don’t know.
A few partners of people on the spectrum talked about the effect their partners’ behaviour and actions had on their children as they were growing up. Daniel, for example, engaged in horseplay with his children at inappropriate times like bedtime or in the middle of a shopping centre, and Margaret found the excitement this caused difficult to manage.
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' I think now that they are older and I can look at them as more mature, more independent people, I think it has had quite a profound impact on them actually. I mean for a lot of years I found I was struggling just too sort of hold myself together in an emotional sort of sense and not give in to depression because it is very difficult to live in the same house as somebody who appears not to notice whether you are there or not. Who doesn’t, of himself, interact with you. So that was quite difficult for me and I didn’t realise until, certainly until after we had got the diagnosis what effect that would have on the children.
You know a child whose father has died at least can think that there is a reason why they haven’t got a father who interacts with them but a child who lives in a home with a father present in the home but isn’t interacting has more to deal with I think. And certainly for the girls anyway I feel that it has made them quite needy, quite insecure in themselves, and they lack the confidence that I would have liked them to have. Now that they are grown up I can see that manifesting itself a bit. The boys have possibly not been as profoundly affected as the girls have. And again I think it depends on the individual’s temperament in the first place as to how well they can cope with those sorts of strains, you know, and different ones are more robust temperamentally anyway. They seem to have coped with it better, but some of them I think are more fragile then they otherwise would have been.
Age at interview:
Age at diagnosis:
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' I think the children overall felt well what difference is that going to make having a label. It wasn’t going to change what they had already experienced, although since then, you know, with some of them I have been able to talk a bit more as to why their father has behaved in certain ways to help them to come to terms with it hopefully in as far as it has impinged on them. Helped to explain that this is how he is and that is why because there does build up a certain amount of resentment towards somebody who doesn’t seem to want to interact with you and children, just as wives do, have a certain expectation, you know. And when they are very small they don’t in one sense they think that what they have got is absolutely normal, but as they grow up and they start interacting with other children, they go to other homes, they see other families in action, they begin making comparisons and I think it is then that they start being aware of what they are missing out on to some extent. And can become resentful and think that their dad doesn’t do this or that as the others.
Several people thought that one of their parents had been on the spectrum although they had never been officially diagnosed. As one woman said:
“We have a strong suspicion that my dad has got Asperger's as well and it was a big problem, sort of growing up with my dad because he is so distant and sort of, he basically used to lock himself in the garden shed all the time and it was this thing where both me and my sister went through a period where we just hated my dad because we thought he didn’t love us. We thought that he didn’t care. We basically felt like we had just been brought up by my mum because my dad was so not there.”
Last reviewed July 2016.
Last updated November 2010.
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