A-Z

Parents of children on the Autism Spectrum

Effect on parents; health

One parent felt that the experience of having a child on the autism sectrum had helped her family’s health because of their change in diet: “They must be the healthiest eaters in the school because it is all real fruit, veg, plain meat cooked at home” (see ‘Medical and dietary interventions’). But most parents described a constant fight to try to get appropriate support and services for their children and many felt physically and emotionally drained by their experiences. One mother, for example, said she felt as though “her whole body was crying” after her experiences of trying to get an autism diagnosis for her daughter while another said she had been “to hell and back”.

 

Katrina says the experience has “physically, mentally, emotionally completely consumed” her.

Katrina says the experience has “physically, mentally, emotionally completely consumed” her.

Age at interview: 35
Sex: Female
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Oh gosh, again [I'm] physically, mentally, emotionally completely consumed by it. I have been depressed. I have got to the point where I thought I can’t cope with this any longer when he is at his worst physically, he cut me, bruised me, held a knife to me, that little boy that you saw, you know it doesn’t seem possible but he did. He tried to get out of a car while it was moving. He has been out on the road. He has tried to jump out of his window. All this and no sleep and I have to say that up until April last year I worked full time as well, so I shared the care with my mum which you know bless her she has played a big part because he has been out of school so much. I was at the doctor's, I had antidepressants, I take sleeping pills. I was actually made redundant from work last year which although I was devastated at first turned out to be a blessing in disguise because I then felt able to make the decision to remove him from school totally. But I do just feel I have had years of no sleep, lots of stress, lots of tears, just desperate feelings, you know, feeling on the edge, feeling like you can’t carry on, can’t live with him, but can’t live without him, you know. Where is the light at the end of the tunnel? And I feel in a much, much better place now he is out of school I must say.
 
But the last little while, while he was at school I just couldn’t go to sleep at night. I was worrying about the next day and predictably he’d wake up and wouldn’t want to go school and just the thought of phoning the school every day made me feel sick. I worried so much and my whole life has been meetings for the last five years, six years, constant meetings. Meetings - why isn’t he in school? Why isn’t he going to school, just endless questions and pressure I feel all targeted at me, it has been so, so hard and really with no support.  

Several parents of children with autism were on an antidepressant and felt stressed and emotionally drained. The unusual sleep patterns of many of the children and the constant battling for autism support services left parents exhausted (see ‘Eating and sleeping’). One mother was trying to organise support for her daughter to attend university and she said that it took her three hours in the evening to settle down.

 

Mike describes how “you can’t relax in your own home” because his son is on the go all the time.

Mike describes how “you can’t relax in your own home” because his son is on the go all the time.

Age at interview: 55
Sex: Male
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It doesn’t matter how much you love your children, if you are working all day, and you go in of a night. You know, I’ve helped my children, well I have got two daughters who have got degrees, so I have helped them you know. Whatever the subject they have done but there comes a stage where you have got to rest. You have got to switch off but with an autistic child they don’t switch off.
 
So that is where professionals don’t realise because they are not living with it you see they don’t live with the problem. Once that child comes through the door at 4 o’clock until they go to sleep at 10 o’clock they are on the go for six hours and so you are just, there is absolutely no, you can’t say, “Johnny go and do your homework. Johnny go and look at a video.” They don’t. They might not want to play with you, but they will be in the room and you can’t relax and you can’t do anything else because they are there, even to the extent where you can’t do like domestic chores. You couldn’t paint a door with someone like that, because they would just go and put their hand on it. Sometimes you can’t even cut the grass because they don’t like the sound of the lawnmower, which my son didn’t. My wife couldn’t use the hoover when he was in the house because he hated the hoover, so she had to cram everything into the day when he wasn’t there.
 
So that sort of tires you out. It is sort of completely, you can’t relax in your own home, that is the … So when we looked at it, we knew he was, and the aggressive behaviour that the sort of 24/7 structure, because where he is now there is a team of 12 people. So there is always somebody looking after him and they are only looking after him for six or seven hours. That is it and then they go home to another life. Well we had him 24/7 when he was at home from Friday to Monday, we had him all the time there was no respite. We had him all the time so not easy you know.
 

Clare's underlying stress and negative feelings make it important for her to work part time.

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Clare's underlying stress and negative feelings make it important for her to work part time.

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What sort of impact do you think it has had on you?
 
Well I have put on over a stone in weight which I think is probably due to, when you know, I am more stressed I tend to eat. So I think that is it. It is hard as I say there is always an underlying stress there. You get these periods of almost feeling like you are grieving and then you think you have got over it and then it comes back and I think, I think, yes, it is hard because you look at other families and you think gosh you have got no idea at all what it is like. And I mean that is not their fault because I would be the same, you know, its and so yes, its it is difficult. And I think you know the support of family and good friends really does help and its- what do I want to say – as I say it is a totally different way of life.
 
And obviously I work part time. I find that helps because I think if I was at home all day every day I would be really dwelling on the autism and I don’t think that is good. I think, you know, I can feel a lot of negative feelings and you know make you feel, really really sad. So at least by going out to work and having my two and a half days where I have got to focus my mind on something else and I find that does help.
 

Jane: 'the loss of dignity of saying I can't cope with this any more is soul destroying'.

Jane: 'the loss of dignity of saying I can't cope with this any more is soul destroying'.

Age at interview: 47
Sex: Female
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The only thing… it is very difficult applying for support when you have got a child without a physical difference, without a physical disability. All the mechanisms are geared towards the physical. You have to almost, it is okay to say yes I am sane, I am coping and I am exhausted, but you won’t get any help unless you have broken down and I think that, the loss of dignity in breaking down is so excruciating. The loss of dignity of saying I just can’t cope with this any more is soul destroying, because you want to cope and you, the symptoms you have are secondary to exhaustion. They are not depression because of an inherent disorder. They are secondary to the fights you have just to get heard.
 
The times you are told, “Well that is a social problem. We are education.” “Oh that is education, we are social.” And because you have got a child, because you use all your energy in keeping your child balanced and you spend all your money and give all your life to keeping this child in balance and being the best that you can and you follow all the government strategies and guidelines and philosophies, but you ruin yourself in the meantime. How much would it cost a professional to do that? And we get nothing. 
 
If I was to give up work to do this then all I would get as a carer is £40 a week and that is just not enough to keep everything going. If I was to give up as a parent and rely on the state, you would have a depressed parent with chronic depression. You would have a sibling, who would probably because of the traits, deteriorate to receive a full diagnosis and you would have a 14 year old who probably would be expelled from school and I think that all the parents who do so much and give so much, that needs to be considered in a much more careful light than it is now. And that the scrutiny for investigating what a parent does to make sure that a child is reaching their potential as the rhetoric says, needs to be much more fair. It needs to be more rigorous and the line between acceptable and not acceptable needs to be much, much higher for children on the autistic spectrum because if your child is not causing trouble there is no need. You won’t get help until your child is completely and utterly deviant in every sense of the word, and that is against all the government policies.
 

Mary-Ann has found the lack of free time she has hard because of the lack of appropriate respite...

Mary-Ann has found the lack of free time she has hard because of the lack of appropriate respite...

Age at interview: 32
Sex: Female
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It is like … and I think they really find it hard to understand that just because your child has gone to school it doesn’t mean that you have got free time. You know.
 
And I mean I don’t think any parents have got free time just because a child is at school and this was kind of at first what social workers were trying to say, “Oh well when he goes to school then you need to socialise, that is when you need to go out and do things”. Like when he goes to school that is when I have got to try and wash the wet sheets and tidy the house and clean up all the mess he has made and spill and I have got to, you know organise doctor’s appointments and I have got to fill in forms and I have got to, you know, think about... there is just so much planning involved I think in being a carer of a person with autism because you can’t, you know, like I say, if I need to, if I need to go to the doctor and Arthur is not at school I can’t just say I take him to the after school club and say, “Can he just come for an hour while I just go off to the doctor.”
 
You can’t do that because they want one to one support which have got to be planned weeks in advance and they have got all of that and also while they are at school, especially when he was still at the mainstream school, you never knew when they were going to call and say there has been an incident can you come and fetch him. Or you know, so you kind of are always on tenterhooks and always kind of thinking well what can I be doing? What should I do and looking for information and you know so I think especially when you are first diagnosed and until… things don’t ever really settle but they do sort of settle and until they kind of settle you always feel I think or I always felt like I was searching, looking, trying to find out, organising things and it is kind of hard to get that me time and that relaxed time and as I say you can’t socialise out of hours because where as with, I have got an 11 year old, okay, so normally if he didn’t have Asperger syndrome or the things he has got, then you know, a friend might phone up and say let’s go round to the pub and yes we could all just go and Arthur would come and he would play with his mates outside or do whatever and fine. Well that doesn’t happen. It is not a reality. You can’t do that.
 
So, you know, and people say well socialise while he is at school. Well while he is at school your friends are at work or you know, it is like when are you going to socialise, you don’t go down the pub at 11 o’clock in the morning you know and it is just ridiculous. You know you can’t watch a movie or go to the theatre or whatever while your child is at school. And professionals, they don’t see that. They see it on paper ‘oh well you have got six hours a day, so what kind of respite do you need?’ [laughs] You know, yes. That is quite [laughs] a challenge.
 

Amanda describes being exhausted by “being on high alert all the time”.

Amanda describes being exhausted by “being on high alert all the time”.

Age at interview: 38
Sex: Female
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But I have had to accept that they are how they are, you know and I worry about the future you know. I know I should probably just focus on now, but I do worry about what the future holds for them. You know, and them coming into being adolescent and adults that is quite scary. And I think when we are out and you never ever can switch from being a parent. You can’t sort of go to the park and just sit down and let them play. You have got to be… you have got to be sort of behind them all the time. You can’t ever sort of drop your guard. You know if we go to say a birthday party I can’t sit chatting with the other mums. I have to sort of keep an eye out for them that they are not going to go through a gate. Or they are not going to go and help themselves to a drink off another table or push you know, do something to another child.
 
So you are sort of on high alert all the time and that is quite exhausting. And you know it is full on from… they get up in the morning and from them going to bed, when they are in obviously. I am quite relaxed now that they are both at school. It is full on. You know, until they are asleep you know and then it is usually sort of half nine, quarter to ten before we have tidied up and we sit down and [sigh] oh [laughs]. But yes.
 
And other people’s attitudes sometimes but I think the people that care about us, are our friends and family are all pretty understanding and know what they are and they are accepted. But when you go, when you go to you know public places and to parties and things, people sort of look, you know and just you know that hurts sometimes. It doesn’t bother… I have to say it doesn’t bother my husband. He says he doesn’t care what people think. He knows how they are and that it is it. But sometimes it just gets to you a little bit, you know.
 

Liz talks about having to fight for everything constantly and relies on antidepressants to keep...

Liz talks about having to fight for everything constantly and relies on antidepressants to keep...

Age at interview: 45
Sex: Female
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Yes. It is very exhausting, not just the fact that you have to cope with everyday life, you know, getting them ready in the morning, making sure they get dressed, go to school, pick them up, you know, take them different activities. But the actual fact that the whole day is spent by making appointments, trying to catch the MPs, trying to write letters, trying to chase appointments. You know it is a continual thing, and although I am really exhausted by it, I have realised that it is the only way that I actually get to get somewhere by going to different seminars, going to different meetings, you know, getting in touch with all the different types of people. It seems to, the networking seems to go quite well, but I know a lot of parents who don’t have the ability to do that and I really feel for them, because they are the ones that are falling through the net. A lot of the parents are very overwhelmed and I certainly have been very overwhelmed and the only way I go forward with it is I am on antidepressants and that was one of the questions we did ask our parents, “How many parents were on antidepressants just to cope in our every day life?” And everybody put their hand up. At some point or other they had been on antidepressants.
 
Normally you know if you have got a problem you try to solve problems, but our children’s situation is an ongoing thing, so it is not going to go away from one day to the other. So it is the fact that you have that sort of worry and that sort of fight for everything constantly. So unfortunately having to go on antidepressants is one way of keeping you sort of stable, because otherwise you would just crack up basically.
 
I have had to up the happy pills, that is the seriousness of it, is that you know, first of all I was on a small dose and it was okay for a year, but then I started finding myself going again and it is not just the mental exhaustion, but it is also a physical one. It affects, you just cannot… you get up and you just think “aaahhh”. And I look at something and I think oh that needs doing and this needs doing and then I can’t. But then I am dyslexic as well so probably the fact that the stress is probably causing that worse. I mean I had treatment as a dyslexic and I don’t write upside down but I used to, but I find that in this last ten years where I have had all this stress, and it is not just stress some days, it is stress all the time that lots of other things have gone worse in me coping, doing things in order, you know forgetting, I forget everything, I mean I have to write everything down.
 
All those things have got a lot worse than they were before. So it is affecting my health as well and if I am not well, this family would be in bits really, because my husband can’t cope with it either. So yes I have to keep, I think it is the fact that you have to keep on, you know I am not allowed to be ill. When I am ill everybody is like oh what am I going to do? And sometimes I might have a migraine and I still have to get up and still have to do things because they are not self sufficient so, yes.
 

Jacqui is exhausted by constantly having to fight for services and support for her children.

Jacqui is exhausted by constantly having to fight for services and support for her children.

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What sort of impact has it had on you personally? 
 
I am extremely tired. It has worn me out [laughs]. I suppose the impact it has had on me personally is that well I mean to say really the same impact parenting would have on anybody. You know if you. That is one of the hardest things because Ben is up by half past four. If Rachael has gone out to a club or something… I mean Rachael is 22, she goes out to a club and comes in drunk at half past three and makes a noise and Ben is up at half past four or Luke is up processing something until 4 o’clock. And there is no in between at all. So it is 24 hours a day every day. I mean I have actually been up 56 hours now without going to bed at all. The last time I went to bed was on Saturday. So there hasn’t been any time at all.
 
Occasionally I just like [snoozing noise] but I have had no choice over these last few days for various reasons because they are sick and that kind of thing, because Ben has a problem with his heart and his kidney as well and he has got chronic asthma so those kind of go along with the added extras of Ben you know that make having to watch him a lot more carefully.
 
I think the impact of children on anybody, anybody’s life is so profound you know and so pervasive that I am not sure that it would really be any different if I had seven kids or I had seven kids with some on the spectrum. The only impact it does make is that you have got to blooming fight for everything and that is the biggest impact. If you could go to school and send them to school and get school report and have a parents evening I can’t quite imagine life like that. But that is not what happens when you have got kids on the spectrum. You know if you are lucky and you get them into a school that does want them and does cater for them, then you have got to spend all your time doing special needs reviews and statement reviews and speaking to psychologists and going in and out and parents evening.
 
The reception with Luke was always one of two. I would either say, “Hi I am Luke Jackson’s mum,” and they would either go very red and look really embarrassed and kind of get rid of me and they would go very defensive and go, “Right, well I am well aware of Luke’s problems but …” and then start telling me everything that he had done wrong. You know, with Joe I have given up. I have decided I am not doing parents evenings in the traditional terms any more. I will just do the special needs review and that’s it because they are tormenting a lot of the time. You don’t want to put yourself in the situation where you are comparing all the time because in those kind of situations you do and I suppose those are the biggest impacts that, you know, you look round at another fifteen year-old, fourteen year old that is off playing off and getting girlfriends and I am still trying to wash his face and get rid of his dummy and it can be disheartening.
 
But at other times they are all so hilarious. I think a lot of time we wouldn’t have had the laughs that we have had. You know I suppose it is all swings and roundabouts isn’t it? Depends on your definition of normal I suppose to how it impacts your life and, you know, what you expect from your life. I suppose I have been very lucky that I have never really had any expectations.

One mother found it very difficult having to teach her son the same task over and over again. A few parents found it hard not really knowing what their children were thinking or how they should best bring them up. One mother said:

“I know everything there is to know about it, but when he goes and does certain things I still can’t stand back and sort of look at it and think well that is the Asperger's side of his interpretation of the situation… My first reaction is ‘don’t do that’.”

 

John describes how difficult it is not knowing what his son is thinking or feeling.

John describes how difficult it is not knowing what his son is thinking or feeling.

Age at interview: 60
Sex: Male
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Now, it seems strange to sort of talk also about literacy with Gavin. Gavin can read. He can read a page of a book. In fact I took a lot of time, took a lot of pride in doing a lot of teaching Gavin to read when he was younger, until I suddenly realised that all he was doing was reading out the stuff in front of him and hadn’t a clue what he was reading about. And if you asked him any question about what he had just read, he couldn’t tell you. Nothing had meant anything to him even though he had read with pretty perfect kind of intonation and syntax. Yes it all came together in a grammatical sense, but in terms of semantic, what it really meant, he really had no idea at all. Okay so he can read. He can also write. And he will write. Gavin will write when he is back home and it is one way, it is an easy way of keeping him occupied actually.
 
And, it is too much of a temptation to say “Do you want to write Gavin?” Something to do, having a pad and a pencil. But sometimes in that writing, quite often those writings is outpourings of his frustrations. The same kind of things that he might tell you and sometimes I’ve, very occasionally, I have just sort of got a bit alarmed and really wanted to stop the writing, because I have a feeling, well I really don’t know. Is it therapeutic for him to put it down on paper or is he just working himself up? And I don’t know, but he has outpourings and you will glimpse sort of inner great disturbances going on in him and you don’t know what they are.
 

Catherine talks about how her daily life has changed and how 'it is painful to give up everything...

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Catherine talks about how her daily life has changed and how 'it is painful to give up everything...

Age at interview: 54
Sex: Female
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I try not to think about the life we might have had, if they were typical children. What helps me is to focus on the work we do with them each day, trying to find more effective ways to teach.
 
Our lives have of course been changed unbelievably. No one expects to have one, never mind two disabled children. It is very painful to give up everything that you anticipated for your child. There are also so many worries, that parents of typical children never have. Every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day. 
 
Our daily life has changed in that all the little things you might take for granted, can be much more difficult. I can never leave the girls alone in the house. Childcare for disabled teenagers can be hard to find and very expensive, so that you think twice before going out in the evening. Planning a holiday is like organising a military expedition. Both girls have sleeping problems and sleep deprivation can become a way of life.
 
We have had to change our house to make it more childsafe, with childproof locks on doors and windows; and easier to keep clean, e.g. wood floors, washable paint on the walls, machine washable rugs, and covers on our furniture. 
 
Going out with the girls can be stressful. They may wander off, or make sudden loud noises. We work very hard to get them to act appropriately in public. Right now we are trying to increase their tolerance for waiting in queues; if the wait is longer than about 3-4 minutes we leave the shop rather than risk a tantrum.  It can be very wearing to be stared at when my daughters act inappropriately, but I guess that people are just curious. Mostly, I’ve been impressed with peoples’ kindness, once they understand that my children have autism.

A few parents said it was hard to watch their children struggle. One mother said, “Watching them find life difficult because you want to protect them and you can’t”. Another said it was hard to see her son never be invited to other people’s houses and very sad when he noticed that other children didn’t want to play with him. One parent said:

“It is hard to see him when he gets upset, when he is traumatised by something, when the whole world seems to have collapsed over something that would be fairly minor to somebody else. It is hard to see him like that.”

Many parents described their children as loving (see ‘Communication; relationships’), but one mother admitted that the “saddest thing about autism is that you don’t really get love off your child”. She felt she was there to fulfil her son’s needs but had no emotional contact with him.

 

Last reviewed July 2017.

Last updated November 2010.

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