A-Z

Parents of children on the Autism Spectrum

Factors that have helped

Parents talked about the kind of things that made their lives easier. Support groups and respite care are discussed elsewhere (see ‘Support groups' and 'Respite care’). Here they talk about the kind of support they got from friends and family, about the importance of having a good relationship with their children’s school teachers and about talking to other people.

Several parents admitted that they found it difficult to talk about their problems to people who were not familiar with the autism spectrum. They described the support they experienced from being able to talk to other people with similar experiences and how they felt that parents of autistic children could understand their problems in a way that professionals and others often could not unless they themselves had actually lived with it. Some parents had been helped by talking to adults who were on the autism spectrum which gave them an idea of the potential of their children.

 

Nicki and Mark get a “degree of comfort” from the experiences of a relative who is on the spectrum.

Nicki and Mark get a “degree of comfort” from the experiences of a relative who is on the spectrum.

Age at interview: 32
Sex: Male
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Nicki' The good thing about it is, there are three or four other bus drivers in the same flat, in the same block, and none of those have ever been told that he is autistic, but it is not difficult to spot that he is not quite your average guy and I think they probably look out for him.
Mark' Yes.
Nicki' And that gives us the degree of comfort as well. Because you know he can be subjected to ridicule and, he is an adult, we can’t be there looking over his shoulder and protecting him all the time and he quite often doesn’t even realise that he is the subject of ridicule. And I suppose there is a degree of comfort in that but it is just knowing that there are other people around him who will be keeping an eye out for him you know and if he is put in a difficult situation that he will have somebody in the same block that he can call on. So… I mean he is independent isn’t he?
Mark' Yes.
Nicki' You know he drives and he takes himself off to bus rallies and all those sorts of things. He is living quite a …you know a satisfying life as far as he is concerned. And I think that is all we can ask for. That is all we want for Tyler. We want him to be the best that he can be and have a life that he is happy with, and so we are just doing our best to facilitate that aren’t we?
Mark' Yes.

Family and friends
While some parents found it difficult to involve their family or their friends in their lives, those who did get a lot of support from family members or friends found it invaluable. Some parents looked to their partners for support or talked about how they worked together as a team. One mother, for example, commented about her second husband who was not the father of her children; “My husband is my incredibly wonderful support and I don’t know what I would do without him.” Some people whose friends and family did not live nearby felt supported through keeping in touch via the internet.

 

Bobbi’s friends are “spread all over the place” but she is in regular contact through the internet.

Bobbi’s friends are “spread all over the place” but she is in regular contact through the internet.

Age at interview: 38
Sex: Female
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Do you use support groups at all?
 
No not really. I mean I am on the NAS a lot. I do have, I am on the internet all the time, okay, and although my friends are spread all over the place and every one of them are in contact every day at some point and I rely a lot of my friends. And my friends are very open. I am lucky to have a friend in Ireland whose father works in the education system and is also very familiar with special needs kids so I get a lot of information. You know a lot of advice sometimes from her through her father. He is a wonderful man. And I have got very good friends in the States. My mum is massive advocate all over it. You know, where I might not necessarily get a lot of support on one area of the family, I get more than enough in the other, if you know what I mean. And my mum is all over it, just constantly sending me information, she is constantly on the phone to me. She is making sure everything is okay.
 
Other than that, do I talk to anybody else whose children are … no. I probably don’t come to think of it. No. Hm. I know I am a member of the National Local [er] the local Chapter of the National Autistic Society and goodness me I have never even taken it up. How bizarre is that? No. That is really… that has made me think… I have never even thought about it. I guess I have called the hotline that they have as well a couple of times on certain issues, but to be honest with you I am really into books. I have been taking a couple of courses. I have already taken ‘Working with Autistic Children’. I am now going to be taking an effective communication course and I am also going to be on the Help! seminar through the National Autistic Society. So I guess I probably rely more on books and sort of my personal take on what is going on then other people’s experience.
 
Maybe as Charlie gets older I might actually reach out to other people that are. But I guess right now I am probably more focused on my situation and I guess I am getting all the answers I need already. 
 

John and Lynne have supported each other but also drawn support from knowing that Gavin is in...

John and Lynne have supported each other but also drawn support from knowing that Gavin is in...

Age at interview: 60
Sex: Male
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What do you think has helped you to deal with the whole situation? Is there anything in particular that you have sort of drawn upon?
 
Lynne' Well you have been wonderful [laughs]. So many marriages break up over this sort of thing.
John' They do, do they.
Lynne' Yes. And it is usually the bloke that goes.
John' Right, oh.
Lynne' Yes.
John' Well I suppose, I mean, okay, put it another way, there are times when we are both together involved with Gavin, but when he is home, yes, I can consciously take Gavin off Lynne’s hands but I know there are other times when she is looking after him when he is home for half terms periods, and Lynne is teacher and so it is her half term period and I am still at work and I recognize that she is bearing the brunt of the load. But, you know, yet there will be times when I can… okay we just share the load basically, although we simply don’t have an even share, but … Sorry what was the question? [laughs].
Lynne' I think it is team work really. We’ve approached it... we’ve always done things together with him haven’t we at weekend and kind of….

 

John' Okay. I suppose the knowledge that he is in the safe hands, particularly since he has been from age 16. For the last eleven years, we have had complete confidence in the people first at school, and now at the care home, but essentially the same bunch of people, you know. And, and there is never any sense that I am worried about what might be happening up there. Does it ever occur to you?
Lynne' No, never.
John' It is a complete and utter, you know, trust in what they are doing.
 

Katrina is glad that Callum has got such a good relationship with her mum.

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Katrina is glad that Callum has got such a good relationship with her mum.

Age at interview: 35
Sex: Female
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Yes. Again my mum has been really, really good. She is 15 minutes away and she has been there if I have been having a crisis and going back a couple of years when he was aggressive she would come and take him away from me for a while and when he was a bit younger she had him a couple of times over night to try and let me have some sleep and when he was in school and I was working she used to pick him up from school. And then now because he is out of school, she will have him on a Friday afternoon, so once a week I do get that little time for myself which is lovely. And Callum absolutely loves his nan and she has got loads of animals which is a big plus, so you know it is so nice that there is somebody else he will go to, because I am very, very limited. I have got probably two friends that he will go to and I could leave him there and then I have got my mum. So as I say I can’t just get a babysitter. I can’t just ask the next door neighbour to look after my kids, I could Kayleigh but I can’t Callum so I am very grateful for time that somebody could give me a break and I am glad that Callum is able to have a relationship with somebody else as well.
 

Amanda has been helped by a supportive partner, family members, a support group, yoga and wine.

Amanda has been helped by a supportive partner, family members, a support group, yoga and wine.

Age at interview: 38
Sex: Female
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How do you think you have remained so sort of calm?
 
[Laughs] Probably yoga. Well we are both … I mean [husband] is very positive about, my husband is very positive and just I don’t know really, you have just got to get on with it, you know. I think if you were uptight all the time and upset about it. I mean you have your moments obviously, but your life would just be a misery you know and you have been given these kids and there you go, you know, you have got to, but the yoga helps me a lot. You know when they have gone to school in the morning, I go to a teacher on a one to one basis. I have a little practice I do for about half an hour and that sort of sets me up for the day and then sometimes I do a little bit at night if I think I am not going to get to sleep because sometimes you are so hyped up by the time they are in bed you think I am never going to sleep tonight.
 
And just my family has helped to support. The group, the group I go to [support group] that were a real turning point, because I have got somewhere I can go and talk to people. You know. I think without that, I think if you didn’t have that sort of network of support, you would just feel isolated. And I am sure you could… and I mean just, like we try and get out even if it is something that we know that, even if it is something that is going to not be easy we still go. You know if we are invited the temptation is to oh no, we are not going to go, it is too much like hard work but we go, we go and you know if they are good that is great and if they are not, then we come home or we try and deal with it there. We have carried on… we still go on holiday abroad every year. We go on a ferry to France every year and you know it is stressful but you know you have got to sort of keep going doing things and you know try and get them used to … you know they are frightened of a lot of things and the world is scary for them but you have got to try and gently do it, you know get them out, get them doing things and keep on with it really. But yes, I am not sure how we stay calm actually, sometimes, yoga and wine I think [laughs].
 

Jeanine describes how her parents have been 'absolutely fantastic'.

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Jeanine describes how her parents have been 'absolutely fantastic'.

Age at interview: 46
Sex: Female
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