Here parents talk about the effect of their experiences on their relationship with their partner, with their wider family and with friends. Effects on siblings and on parents themselves are discussed further in ‘Siblings’and ‘Effect on parents.
While some parents felt that their relationship with their partners had grown stronger, others had grown apart from their partner as a result of never being able to spend time alone together, having had years of sharing their bed with their children (see ‘Eating and sleeping’) or because they had very different views on how to bring up their children. As one parent said, “First of all we were blaming ourselves, that we were doing something awful to him… I was too soft, he was too tough or I was too soft and he was too tough. We were just pulling each other apart and blaming each other”. Several marriages had ended in divorce or separation.
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
For me and my partner [name] it has been just like a huge wedge again in the middle because all of my time is taken up with Callum. Both of our sleep for eight years has been disrupted by Callum and again [partner] feels the same resentment as Kayleigh that we don’t go out, we can’t watch a film, we can’t have a meal in peace. Nothing is simple and we don’t have, we can’t have a babysitter like anybody else because Callum couldn’t possibly just be left with somebody. We can’t go out as a family because he can’t cope with the noise or the change or other people. So we just don’t do anything normal like normal families do, which I think me and [partner] kind of accept now, but I think, I know Kayleigh is still very resentful and I think it will get worse as she gets older. But I am hoping equally that now Callum is out of school he will, not be more normal, but hopefully cope better with things that would mean that perhaps we could do some things that other families do, like have a birthday party or go out for a meal or things that at the moment have just been impossible. So yes, a huge impact on the family.
Age at interview:
Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
I suppose me and [name] we are, we must be reasonably strong as a couple because we wouldn’t have been able to withstand the things that have happened. I mean a lot of people would have given up I think. But what I will say is I think we have lost our own identities a little because everything is focused on Nicola, everything we do. I mean I know like when you have kids your family life does centre around the kids but it does seem to be a bit more magnified when they have got a condition and we wanted to come away from London and move down here for example, but we couldn’t, because we had got her into the school and we thought well we can’t risk that we are not getting her to another good school there. So we waited and waited and waited.
I have always had a certain independence streak, I always wanted to work but my work has always had to … I never felt comfortable, well I did have one experience and she touched on it and it didn’t work out. So I have always had to work around Nicola. I did nights just stacking shelves for years and years because I would be at home in the day. So yes my career path couldn’t develop and on a day to day basis it's … I can’t go to work because of Nicola, I can’t go shopping because of Nicola....
It is that sort of life that we lead, it is very regimented and it is based around Nicola. and she never loves both of us at the same time. I don’t know if that is Nicola or whether that is a very strong characteristic that they can’t share their feelings. It's, I love daddy this week. Don’t want to know you mum. Next week I love you mum, can’t stand my dad, don’t want to talk to him, don’t want to be in the same room as him and it can cause conflict.
I mean we didn’t know for a long time this is what was happening. We didn’t realise but now as you sit back and you analyse I think that it is that she focuses on just the one thing and all her attention will go onto one of us and not the other. She can’t have that divide where she will treat us both equally. So while the parent that is being all loved up, is being all loved up the other one is pushed out and the one that is being all loved up is stifled. And it can cause a bit of friction, like a three way friction. It is not bad, I mean we are not falling apart at the seams, but it is irritating. And we feel as a couple, that, I think sometimes we feel we are not a couple because I don’t know what I am trying to say, it is like babysitting duty, it will be all Nicola one week for one of us and the other one is left out in the cold and then it is the other way round and it is hard to have ….
I think all that we would want, if we was to sit down and you asked us that, all we would want is for us to be a three, unconditional three way thing and that is the end of it but it doesn’t seem to work like that. Can you understand what I am trying to say? So she can’t help it and we know deep down that she can’t help it but she causes a divide and it is hard, but … well we are still together, we have been married coming up 21 years now and I suppose we have just got used to it. It is just that is our way of life. But it is hard to function. You don’t feel like a proper united family because there is always, this is a good way of putting it, this push me, pull you atmosphere. But we don’t know any different really I suppose so. Us time is a bit lacking I think because a lot of the time we are just so exhausted, mentally drained, and you go to bed and you just don’t even talk because you just can’t think, let alone talk you know.
Age at interview:
Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.
It puts you under a lot of pressure. You know. I mean me and [husband] we find it hard. You never get a minute. It is like you are up in the night with them often. Louis sleeps in my bed most nights. He starts off in his own but by about 2 o’clock he comes teetering through and [husband] just gets out and goes and gets in his bed. He has given up I think. You are under a lot of pressure all the time and you know you have got to try and keep calm with the kids, because if you lose it with them you know, you are just not going to get anywhere. So you know, you do find you snap at each other a little bit and you don’t have a lot of time for the marriage as a couple. You know, it is quite hard to sort of… I mean we have got my parents who will baby sit and I don’t know what we do without them to be honest because you need to get out, you need to get out and have a break.
But it has put us under a great deal of pressure. And we have had some tough… we will get through it but we have some pretty you know, tough times and you know you tend to take it out on each other because the kids, they can’t help it. It is not their fault. And you have got all this patience to the kids and your husband walks through the door and you had had them all day and who are you going to snap at, you know, the poor guy who walks in and I am like…. So yes, it is hard. But we are a team with them. You know we both know what they need and he is fantastic with them. You know he is pretty hands on and he came to the Early Bird course with me and my mum did too, to learn about it, so we are all sort of understanding what they are like.
Mum and dad are fantastic. Obviously they were gutted because they waited so long for grandchildren and to have these… you know mine were the first two to have this happen. But they are there for us all the time. You know they come and they look after them if I need to go to work, or you know, we want to go out or we want to clean the house occasionally. My mum, as I said my mum did the Early Bird course which really sort of opened her eyes. You know she understands quite well. She gets quite upset when we are out and people make comments. That really… I mean I have got rhino skin now, I don’t care. I mean I do check their behaviour. I don’t just let them run riot. But if people are going to think things, they are going to think things. I have got to put my kids first.
Well my mum can… I know it hurts her when people say things and she has always got a card at the ready [laughs]. My dad is the kind of really patient person actually. He really… and he just seems to have a knack with them both, you know, he is very calm and he doesn’t ever get stressed with it. I wish I had his patience really because he is just… and the effect on them is unbelievable. The calmer the person the calmer the child really.
One of the key problems parents discussed was that they could not go out and spend time together because of their difficulty in getting babysitters. One mother thought that babysitters were frightened of her son because they felt out of their depth with his intelligence and because he could become very emotional (see ‘Communication’). Another parent whose relationship had recently ended said that she had used respite care to support her while her husband was away on work, rather than using it to provide cover for her and her husband to go out together; they had grown apart because of this.
Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
Yes, oh yes. We didn’t go out for, when he was very young it was okay, and then now he is able to handle it, but there was a big gap in between when he couldn’t handle it and babysitters didn’t thank us for going away and leaving him. He also went through a spell when we used to try local teenagers baby sitting for the first time and we would just go perhaps to a neighbour's house, he tried the trick of always finding some way of hurting himself so they had to come and fetch us [laughs] and it was very ingenious. But… he definitely had a big problem and we have actually tried to make it a rule that we do go out, now perhaps every month or six weeks to give that reminder, so that he is reminded what it is like, because I think one of the problems is, if you stop having babysitters for a long time as we did is that the children then lose the recollection that it was all right and that they did have a baby sitter and it was fine.
So we now try and keep the practice going, but it does have a big effect, you just can’t socialise together. And we have got into the habit now of doing it separately because we have to. There is no other way of having a normal life really so we tend to find that we socialise a lot separately and then as a special occasion both of us do something together, which is lovely. And very, very occasionally we actually go out together which is really nice [laughs] but very rare.
Some of the lone parents described feeling isolated and lonely. For some however, being single reduced tensions because they could focus on their children rather than accommodating another adult as well.
The responses of wider families varied considerably. Some were well supported by their families who were involved in the children’s lives (see 'Support groups'). A few parents thought that other family members were accepting because they themselves were so positive about the experience; “We have always accepted really the autism and just the fact that our boys are different”.
Other parents said family members did not really understand autism; they met only once or twice a year. As one mother said, “It has always been a bit of a dreaded word in my family, you know, it is still very much the ‘A’ word. They don’t talk about it”. Another said, “The rest of the family seem to think he is some kind of mental nut job so I tend not to talk about it really”. Part of the difficulty arose from the infrequent contact between family members which meant that relatives didn't really get to know the children well.
Some grandparents thought that the children would “grow out of it” and that the parents were over protective or that the children were either eccentric or naughty. As one mother commented; “I suppose elderly relatives find it difficult and I think that to some degree the perception is that autism is just an excuse for bad behaviour.”
Helen, a full time carer, and Jason, a garage mechanic, have two sons aged 6 and 2. Ethnic background/nationality: White British.
Helen' No. It was too much, way too much but the rest of the family well. My mum has taken it okay.
Jason' Your mum has taken it and…
Helen' I have got a handicapped brother who is now 33 so my mum kind of went yes, okay, fine, whatever [laughs]. No problem.
Jason' But my mum still thinks that he is going to grow out of it. So …
Helen' No. We are, yes. We have given up with that one.
Jason' It has divided the families a bit.
Helen' We have divided the family there, yes, because one of your sisters has taken it on board and they have been fantastic and her husband… they have got a ream of their own kids [laughs]. But when we go down there which isn’t that often they are called the special boys and they are spoilt rotten and they are allowed to get away with absolute blue murder and they always take them … [name] he takes them out on the tractor. He brings the tractor home to take … because he knows he likes going out on the tractor. If he knows we are going down he brings the tractor home so that he can take him out on the tractor. They have been brilliant. They have accepted it. We have explained to them how he is, and as far as they are concerned, he is who he is. He is Josh. But your parents have just gone oh well he will grow out of it, you will cope, and left us to it basically. No contact. They have just gone completely the other way.
Jason' Yes. They have just gone.
Age at interview:
Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.
You say your family, some of your family, find it difficult. What has it been like with friends and family when you have told them?
Jane' In the beginning it was sort of like, “Oh there is nothing with him. You are just worrying too much. He is just a normal little boy. Don’t worry, that is normal for a child to do that. They all do that.” But... and that feels like you want to scream at them sometimes, because I have had a normal functioning child and they don’t do that, you know, they don’t pull the freezer out, and you know, want to pull it out constantly and run all over the floor with frozen food. Neurotypical children don’t always want to do that and they don’t want to open and shut the doors fifty times in one day [laughs]. And so it does feel frustrating, but as they got to know [name], and as I have been able to explain more about the condition and I have learnt more about the condition, then I can explain why he is doing certain things. Then they have sort of said okay. But some, some family members don’t like the acceptance of accepting it and you know they just want to think of him as normal. And I think you know, that is okay, because it is very hard to come to terms with the fact that he is not, and we as parents have had to do that but not everybody has to take that journey.
What about your family?
Dan' Well from my perspective, my family perspective its it is more for being educated and learning more, especially where we are from in terms of the Caribbean, because it's trying to understanding first of all what autism is, …what’s.. what is the condition and then basically how a kid with autism acts and stuff like that, because it is not so much of being in denial, but more of having a discipline perspective in terms of the way a kid is growing up. It is usually perceived as being autistic or anything is wrong with the kid, most of the time it is just seen as the kid being naughty and what have you. And it is just since myself and other relatives have moved away from the Caribbean to North America, to England, to different parts of the world, we have come to terms and learnt more and understand more and are more compassionate I would say to the term autism.
Dan' And maybe here having a child with autism, my cousin who lives in New York having a child with autism it is more compromising on the part of our family. One for them to know what it means to have a child with autism and actually have them trying to help or trying to sympathise to an extent and sympathise, you know, so that is a sense of relief. It is not so much of a denial it is more for an embracing and just trying to make the best of the situation.
Those parents whose wider family were not particularly supportive or who did not engage with the children, felt lonely and isolated. Lack of understanding by people outside of the family was often reinforced this feeling (see ‘Going out’).
Some parents had developed very good friendships through their involvement with support groups, others described how some friendships had suffered because people found it hard to understand autism. One mother, for example, felt hurt that she was left out when her friends got together with their children.
Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.
But it is quite lonely at times. But I do have people to talk to, I mean I am not sort of shut off from it, it is just sometimes I feel I would like a soul mate I could talk to. I did used to have one before my daughter was diagnosed, but one of the things that happened to me, may have happened to others that when you get involved in the world autism, all your friends from the old life fade away, because we have no point of contact. I mean, for instance, the worst that could happen to, I will call my friend Elizabeth, that is not her name, Elizabeth the worst that could happen to her daughter is if she has a row with her boyfriend and that is like the troughs of despair. Now if my daughter had a boyfriend to have a row with it would be wonderful. So the levels of anxiety and parental worry are at a much higher level with Asperger's, than with ordinary families and to try to convey that to people and of course Asperger's is all encompassing because it affects every single area of your life from cleaning the floor to going to bed at night, it is there the whole time. They don’t understand so a lot of Asperger's people, like me, find themselves isolated and quite lonely.
Some parents were friends with other parents of children on the spectrum and enjoyed being able to relax with them and not worry about their children’s behaviour or actions. This is discussed further in ‘Support groups’.
Last reviewed January 2015.
Last updated November 2010.