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Parents of children on the Autism Spectrum

Thinking ahead

Thinking about the future was something that many parents said that they found hard. They were concerned about who would take care of their children and what would happen to their children when they were no longer around. For parents of young children in particular, it was very difficult to have any idea of the ways in which their children would develop (see Positive change over time’). On this page, we provide an overview of the ways in which parents discussed their children’s future prospects.

For some parents of older children or adults, difficulties revolved around the problems their children had doing typical jobs. The children took longer to process information, or found workplaces too chaotic to cope with, and trying to find the right employer and the right position was rarely successful.

 

Jacqui thinks a lot of heartache and depression could be avoided if more training was provided...

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Sex: Female
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So there just need to be more services and more input and more input from places like the National Autistic Society. They have things like Prospects that look out for people, employers that are willing to take on people on the spectrum and willing to work along with them. But it is only in certain areas and it has only got a limited amount of funding and there is only certain, you know occupations that go along with it.
 
And people need training as to what kind of occupations suit these kids rather than them all being thrown into trying things that are absolutely hair-raising. Be put in front line of a shop if you don’t want to deal with people is dreadful but if there was more education into the fact that these are ones to perhaps avoid and try something that is more solitary or more uniform or … then a lot of heartache would have been stopped and an awful lot of depression. You know that is what comes in adulthood is all the mental health issues that go along with suddenly thinking goodness I am left on the shelf. Everyone is going to work and I am not. Every one has got a qualification and I haven’t and that seems to go along with it all, you know. That a lot of the time people on the spectrum take an awful lot longer to do things and think things and process things and time needs to be given. I keep trying to teach Luke it isn’t the end of the world that you haven’t got GCSEs when you are eighteen but it is to him because he thinks what next? You know, and he doesn’t know what next and unfortunately neither do I. You know, I can’t give any concrete answers to it but the transition is something that is massively important and massively overlooked. Hopefully that will be the next stage that people will realise. That all these teenage Aspergery people will have to do something after it. So ….
 

Daryll describes how important it is for Tiffany to go to university because if not, she will...

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Age at interview: 60
Sex: Female
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I mean if Tiffany doesn’t go to university she is going to be here for ever. She won’t be able to go out and do a normal job because she can’t. I mean she worked at [name of sports centre]. She qualified as a pool life guard, both my mine did. But it is so chaotic down there that she couldn’t cope and I believe that she hadn’t actually decided to leave that she would have eventually been fired because the others were incompetent. Many of them were her friends from college who did it for what little money [name of sports centre] paid and you know she would come home so stressed after a three hour shift, whereas Carl would do nine and he would come home tired but not stressed and in the end I said, “You are not doing it any more. You just can’t cope with it.”
 
I mean it is bad enough when she goes out for a night out. She is out of it really. It takes her, because it is all new things that she is taking in all the time and I said, “Do you see now why I get tired?” And because if you travel you are trying to assimilate information all the time and of course it takes her longer than the norm, whatever the norm is, and so she gets exhausted.
 
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Tracy describes how Nicola is very capable but she is not sure whether she could live independently.

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Age at interview: 40
Sex: Female
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Well in our case, in our particular case, and it is not in every case unfortunately which is very sad, but in our case Nicola is capable. She can achieve and she has proved that she can achieve and I get very sad because while I am here to kick her up the bum, so to speak, she will achieve and she will do but if that stops, for whatever reason I can’t do that, then she is just going to fester away and it is a shame because she is a bright spark and she has got so much to give. But I don’t know how to sort of teach her the independence now that maybe she doesn’t need me. Or does she need me. I don’t know.
 

Though Nita has written a book and Carolann is “so blinking proud of her”, she is not leading the...

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Anyway, so she left university and she is home with me now, as she was for many, many years previously. She has written a book, which has been published called “Standing Down, Falling Up”. She is working on her second one. She has done… she is a very good advocate for Asperger's because she has done TV work and radio work and she talks at conferences. So she is a very confident person. And that is what I am delighted and I am so blinking proud of her. But on the other hand that is not what she wants. She doesn’t want to be known as ‘the person with Asperger's syndrome who talks at conferences’. She wants to be known as Nita the girl who has a life, who has friends, who has relationships, who has a job, who will live independently, who will be able to drive, who will get a job. Those intangible things, those things which remain in the future for her is what she wants to be. But at the moment it is a very, very slow process.
 
And of course the irony of it is, if you are stuck at home and you don’t go out how are you going to meet people who are going to give you those things that you want? And going out into society, into the world, is just such a terrifying thing to do. Scary and risks you take especially as a girl with Asperger's, who doesn’t understand the way society works, and doesn’t understand the notion of intent. And the smiling faced stranger and all the classic things you think about. It is very terrifying to think that she could be a victim and taken advantage of. Her naivety and her gullibility often shine out.
 

John and Lynne discuss how difficult it would be to have Gavin living at home in the future.

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Age at interview: 60
Sex: Male
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Lynne' Because when … I mean one of the things if I really think about it, and I mean it is a really scary thought, but if the funding was removed and he was say, left to us, to look after. I don’t think I could cope with it.
John' No. There is no way.
Lynne' You know to be quite honest and truthful, there is no way I could cope with it.
John' And we’d have different issues about this, I think. I mean for you, you know, you would be fearful of outbursts and your ability to control them.
Lynne' Yes that is right. I would be terrified.
John' I wouldn’t be so worried about that but I can’t help feeling guilty about the need to keep Gavin occupied and if I am not doing all the button pressing upon on.
Lynne' That is right.
John' Constantly attending to urge him to do something constructive,
you know, that I feel …
Lynne' We are both like this aren’t we…?
John' I feel guilty that I am not keeping him….
Lynne' But it is great to do it when he is away and comes home like he is at the moment and we can give him all this attention, and we really enjoy doing it. But then…
John' But you can’t keep it up.
Lynne' But you can’t keep it up. You know, at the end of … Sunday we will take him back and there will be, you know, we will have time to ourselves again. But when he is home we just give him loads of attention and it is good. So yes, it is easy at the moment, because its enjoyable. We enjoy having him around. We enjoy looking after him. We enjoy his good moments and he gives us great pleasure, but the thought of, you know, us being here 24 hours and someone… and the other thing of course, is that we have no, nobody who had baby sit. It is like having a 28 year old toddler. We could never go out, we could never, you know, do anything, other than have, have him which is a very scary thought.

For the parents whose children were in college, the concern was about what would happen to the children at the end of the course. As one father said; “What do we do next? He won’t be ready for employment. He will probably never live independently. He will always need somebody by his side, so what does he do next?”

Parents of younger children described mixed feelings about their children’s futures. For some parents the future was a “scary, scary time ahead” while other parents were confident that their children would lead happy and fulfilled lives.

 

Bobbi is looking forward to seeing her son develop and thinks it is going to be a “really cool...

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Age at interview: 38
Sex: Female
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And finally how do you view the future?
 
Very positive. Very positive. Scary but positive. I know I am always going to be a part of his life. It worries me more when he is an adult then as of now. I am also concerned about the pressure I put on myself too, to make sure he is prepared for the future because I am really pressuring myself now because I think now is where the groundwork goes in, now is where it is going to make a difference. If he doesn’t get the support, the help he needs now, where is he going to be later? So I am concerned about the future. I am worried about probably more so what is going to happen when I am no longer around. That is probably my biggest concern but as that is far away, we don’t think about it too much. But yes, no I am also looking forward to the discoveries he is going to make, to what he is going to become. The person that he is developing into, you know, I think it is going to be a really cool ride. Without a doubt you know. And I think he is going to be a really cool person. Both my sons without a doubt. But he has got such a unique take on the world I think he is going to bring something different to it.
 

Rachel sees the future negatively or positively depending on what kind of day she is having.

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Age at interview: 42
Sex: Female
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How do you view the future?
 
It depends what kind of day I am having. I will be honest with you. When we discuss Tom’s statement I am not quite as positive because everything is so negative. I see two ways. I mean I see him going off to college and doing really well and having a relationship with somebody that sees him for the sweet, lovely, honest, straightforward boy, not one that is going to be saying something one minute to get what he wants and then running off. Somebody who is going to be honest and straight and love him for that.
 
And then at other times I see how much he struggles in school and then I see him still living at home when he is 40. But I don’t really, I don’t really mean it. I think he will probably find his way. He has got that determination that he wants to find his way in life and he wants to progress. He says that. He wants to be a zoo keeper so he is going to go and working Australia Zoo with Steve Irwin. “And I am going to live in Australia aren’t we mum?” [laughs] “All right sweetheart.” Because my husband is Australian, so we can actually go and live there. Matthew is much younger and right now he just now to be a Jedi [laughs]. I don’t think he is really going to get that wish [laughs] though he is practising a lot.
 

Vikki and Nick don’t know if their son will live with them for the rest of his life and find it...

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Age at interview: 40
Sex: Male
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Are you thinking about the future?
 
Nick' Quite a lot actually.
Vikki' I think because he is growing up and you know he has been nine this year and if the next nine years passes as quickly as the previous nine years, he is going to be school leaving age and it is thinking well what is there in place for sixteen, seventeen year old ASD children who perhaps are not going to be the stereotypical high flyers who are going to go to college or are going to go to university? So we just don’t know what the future holds for him at the moment. You now whether he should go to college, whether he shouldn’t.
Nick' It is back to the aspiration thing. Obviously we have seen a lot of progress since his diagnosis over the last three years but also because Tom is growing up you suddenly realise all the progress he is not making as well. So we don’t know. We don’t know if he is going to be living with us for the rest of his life or what, you know. And your find the government, it is what resources were in the place for example like Remploy which is an organisation specifically set up to help people with disabilities work or try and have some kind of a normal life through work and that is being cut back by the government. It does worry you, so I don’t know what he is going to do if he can’t find work. Is he just going to sit around all day or at some point he is going to realise or is he going to realise that there has got to be more to life than this. So again it is an aspiration, we just don’t know what he is going to aspire to. We just have to try and help him as we go through and see what happens.
 

Nuala thinks her son’s life is not going to be the easiest life but it could be quite a good life...

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Age at interview: 43
Sex: Female
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This is a difficult question that we have touched on but how do you view the future?

 
[Laughs] That is not that difficult, quite positively on the whole. I think I am quite, I am quite confident now that he can get something out of his schooling, probably, and I am quite confident that if he can learn to tackle his social difficulties then he might be fairly successful. I do think he will have to have a terribly patient partner if he has one [laughs]. And I know he wants one. I know he would like to have children. He said that to me, and I suspect that is probably quite an aspiration. So I think there is a good chance he will have that. But I think he or she will have to be terribly patient, so I hope that the future is fairly good, but I think I worry about specific things, like, conflicts with people getting out of hand, or specific problems and slightly more general problems about not being able to get work perhaps or falling into the trap of depression I think is the biggest worry, I think, in the back of my mind is the thing that there are a lot of frustrations in life ahead for him. It is not going to be the easiest life but I think it could be quite a good life with luck.

Parents tended to focus on trying to prepare their children for adult life despite the uncertainty this entailed. One mother, for example, described how her son wanted to study augmentation and artificial limbs and electronics at Cambridge University and she was working hard to prepare him to live independently so he could achieve this.

The uncertainty that parents experienced about their children’s future, is a common characteristic of having a child on the autism spectrum. Accessible information, support and service provision are factors which help parents to feel more confident about their children’s futures and these are discussed further in ‘Information’ and Support groups' and 'Respite care’.


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Last reviewed July 2017.

Last updated November 2010

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