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, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British
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.
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?
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?
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, a part time administrator, and her husband have two children; Jack aged 8 and Charlie aged 6. Ethnic background/nationality: White American.
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.
Age at interview:
John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.
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.
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.
Age at interview:
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
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.
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.
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].
Age at interview:
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
Some parents were less fortunate and talked about how family members did not really understand their children or were not particularly supportive (see ‘Effect on relationships’).
Some parents found various health or education professionals helpful. It was important that staff at school understood and were aware of their children’s abilities and disabilities. Also important was the existence of staff members who were able to establish a relationship with the child. Pre-school teacher counsellors, teachers, key workers and a community co-ordinator could all contribute to making the parent feel supported. When they didn’t, the parent could feel very isolated and desperate. Feeling confident that the school was right for their children and having a good relationship with that school was very important. Some parents had felt it necessary to remove their child from a school where they were not being supported.
Rosie, a retired nurse and artist, lives with her partner and youngest son Sam. She has four children aged 29,27,26 and 14. Ethnic background/nationality: White British.
The school has really helped me. The school – I can’t praise the school enough - because it has settled Sam down and because the teachers have a real understanding of autism. I am not saying other schools don’t, but they do have an understanding, but the teachers who go to that school see such a huge spectrum of children with autism. There are children there who can’t speak and things and there are children like Sam who are on the autistic spectrum but they love people and it is very difficult for I think, for teachers in a normal school to understand autistic children, but in that school they have a real understanding of it and it helps.
And it helps educate me as to what he can do and why he does things and for me to see how Sam sees things, for me to understand how Sam sees the world, helps me…. Not to look after him but helps me, helps me with his needs. It helps me to … how can I explain it… because now I know more about autism and how Sam sees things I can help him access my world in a way. Now I now know that Sam sees everything the same. He doesn’t really understand the difference between a person and an animal and a book. He sees them all the same. He sees them as the same value really. It is quite strange. And he treats them … it is not that he doesn’t love people, he does love people. You know we talk about that sort of … that is what I am trying to do, another thing is to understand emotion. It is very difficult for Sam but the school really help that. They really they really open Sam’s emotional understanding more. They talk about things and they break down things into very, very small things. At the moment they have been talking about sex education and growing up and they are just breaking it down into very, very small components and so Sam can access them and try and understand them so that is good and in that way they educate me because they tell me what he is doing and how he is doing it and that is good.
And they have a community coordinator at the school. She isn’t a teacher but it is someone who helps the parents, is there for the parents and carers and the family and like if you have got a problem you go today and he will try to sort it out for you, like I have got a problem with getting Sam to school, and he is keeping…. He knows all about it and but he is not doing anything at the moment. We are waiting to hear from the LEA, but if I am not satisfied he will go in there and he will be my like advocacy for that. And he also acts as Sam’s advocacy as well with things so if there is anything you want to know he will help you with, so that is good.
Clare, a pharmacist, and her husband have two sons aged 4 and 6. Ethnic background/nationality: White British.
So that was November 2002 that we had the diagnosis and it has really changed our world. I think until you have lived with a child with special needs you can’t really comprehend what it is like but having said that we have had some very good support as well. The National Autistic Society put us in contact with people locally and very quickly our local education authority autism out reach team were in contact with us.
And we call them our angels because they came out. They helped us to work with my son because at that time when he was first diagnosed he basically liked to sit in a corner and spin things, lids, plates. He had, I mean before I knew about the autism we thought gosh he has got a real talent for spinning things. Look at this, how clever he is. And then we found out that that was one of the things that autistic children like to do.
And I was quite shocked really when I first started to try and do some structured played with him. He could only tolerate about thirty seconds of that and then he had to go away and move away. And it was you know, it was hard because you have to almost like teach him how to play. He didn’t know that play could be fun. He just wanted to be in his own little world.
So over the past two and a bit years we have worked together with him, with the autism outreach people. He goes as well to a special nursery. It is about forty five minutes journey in a taxi, three times a week, which he enjoys and they have a specialist autism class there. So he goes there. And we also he currently attends a mainstream nursery for one and a half days a week with some support in there. He has a one to one helper and again autism outreach give him support and all this package has helped bring him on a lot.
We, I mean now he has got speech. He will play better than he used to but we still don’t really have much interaction with other children. I mean I think at the mainstream nursery, while he doesn’t mind going, I think he leads quite a solitary existence once he is there.
Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
Has anything helped you deal with the experience of having two boys with autism?
There is actually another mum at the school who has also got two children with autism. Although she’s got a boy and a girl, but she has also got normal children and hers are 12 and 13 and I have found her experiences have been, just learning from her and listening to the stories and experiences that she has had has really helped me to sort of think positively, and think well I can deal with it. And also the way I look at it, is if I just have one autistic child, neurologically typical is another phrase I have heard used for a normal child but one of each, the rules are different for them as well, and that can cause so much conflict in families. At least with my two both being the same, the rules are the same for both of them, so there is no need for so much conflict, so in a way it sort of works out quite well having two. So it’s been quite positive about it. But I have just found that is the way it is.
One mother thought that for her the experience was easier to deal with because her son had always been the way he was from birth and it was “not like it happened overnight”. As she remarked “So I am used to it, it is normal for me”.
Paula, a specialist senior nurse practitioner and teacher, is married and has two sons aged 14 and 12. Ethnic background/nationality: White British.
Is there anything that in particular that helped you deal with the whole experience?
I don’t think so. I think as a parent if you are reasonably intelligent and with access to the internet and stuff like that, you just deal with it and get on with it. I think probably working in mental health for as long as I have has sent me a bit mad [laughs] and my norms and values are kind of blurred and I think you find that a lot with mental health people. I am mental health people, I am very mental. That because you see so much of what is not normal that your values do change over time so I am not really fazed by anything, you know, I am kind of, I am never really shocked about things that happen, you know kids that get abused or whatever, I am never shocked by that because I used to see and deal with a lot of the emotional stuff with that in my own childhood and in families that I would deal with through my work.
And then when I moved over to the Autistic Society, it was 24/7 autism, do you know what I mean? So I have been there, seen it, done it kind of thing, not that every experience is very real for every person. But I kind of know with … as soon as they start talking and you are talking about whether it is education or whether it is about an ex husband or whether it is about difficulties in relationships, you know where it is going. I have been a nurse since I was 18 years old and I am 40 now. So 22 years experience of working in mental health, and being married in mental health and all of those things to sort of help me understand things better.
Getting information and reading about autism and people’s experiences of the autism spectrum helped many parents to understand autism and the resources available for them. This included going on internet forums and sharing experiences (see ‘Support groups', 'Respite care' and ‘Information’). Many parents also found the National Autistic Society (NAS) a “great support” and several parents found courses run by the NAS, such as the Early Bird course, helpful.
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
What do you think has helped you deal with the experience overall?
I think reading as much as I can about it, about Arthur’s conditions. The Tourette’s Syndrome Association, have a really good internet site which used to have a forum on it, but they have closed the forum and I think it is such a shame because that really helped a lot because with Arthur’s licking and things like that some of the things aren’t in the books you know and when I put on there saying my son does this, has it got anything to do with his condition. Other people have answered, “Oh yes, my partner he can’t go through a door without licking and touching the door frame. And my child licks shopping trolley wheels.” And you know that kind of thing and it was like, okay, you know, it is part of the condition because your family and that tend to tell you, “Oh no, rubbish, he can stop that.” It is not you know, and I can say because the books don’t have it specifically there because they can’t possibly put all of the information in there, you know. So that is a shame.
I mean I have been on the National Autism site and that and that gives a lot of good information. I think reading that sort of information and I say reading books written by people who have had the experience, that have been through it. And when you see it written down it makes you realise that, you know, this is real, it is not just someone saying it, or my imagine, it is not just our experience, you know. So yes, books have been the biggest help. The Carers Association practically because they have helped me to find out what I need, you know, to find help and support through it. The other organisation that was really good was Parent Partnership for school. I mean we had a support worker and she has just left but she has helped us through the whole process and we were very fortunate to have her the whole way through because one of the biggest problems and I think that everybody will find this is that every time a professional changes you have got to start all over again and whereas the lady who helped me she knew the whole history of Arthur’s education and she through us all the way. So it never had to be explained or there was never, “Oh well what about?” because that had already been explored and she knew it.
Some parents talked about how they had dealt with their experiences through resilience, determination and love for their children.
Helen, a civil servant, and her husband have two sons aged 9 and 10.
What sort of things have helped you deal with the experience?
I think remaining focused and trying to remain positive and going through bad patches at different times. When I have felt really low, fortunately [husband] has been fine. Had we both felt really low at the same time that could have been very, very different. But I think the thing that kept me going was I knew that if I didn’t, really sort of pull myself together and get on with it and support him that it was going to be far worse.
So I really think just a pragmatic approach. And it is very easy for me to sit and say that because that is the sort of person that I am but just being very, very determined and very determined in terms of knocking on the door at the school and you have to be prepared to be unpopular and I think if you can take that on board and keep asking and really sort of knowing what you are entitled to, knowing what your rights are and knowing what help is out there to support you and your child. And also the fact that they can’t help the way they are and that they need you. So I think they are the things that have kept me going and seeing the benefits. You don’t see it straight away but I think if you are prepared to keep going and you are prepared to … you have to learn about it I think to be able to cope with it. And I think if you can do that then that is half the battle.
As on mother commented: “you have got to get it right for the child whether it hurts you or not” and there were several comments from parents about “fighting tooth and nail” for their children. One mother said that she kept going because otherwise her son would be in a residential home and that made it worth it. Another parent thought the most helpful thing was the passage of time.
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
How have you remained so sort of calm?
It is like the swan isn’t it? It is all calm on the surface but it is not calm underneath. Your feet are like going ten to a dozen. You can imagine it. Yesterday I was sitting there and I noticed that Tom’s eyes are starting to twitch. They are starting to go up and back and I thought my God he is becoming epileptic or is it another … so it is another thing because you can’t let him know you are worried because everything will become… He is such a hypochondriac, as much as I love him, he gets man colds, the worst way. You can’t tell him that his eyes are twitching but you have to mention “have you noticed it happening?” without making a big thing of it. Everything, when you deal with them everything has to be calm because they will pick up on any anxiety and you go from a difficult situation, can escalate. It is like putting petrol on a fire, it will just escalate, so you train yourself to becalm around them, I think.
But I mean obviously they are sweet boys and I can see progress in them and you have stay like that. And it hasn’t always been like that. There have been points where I have been really, really not coping, but it is, you know. You just have to do your best.
Support parents would like
Some parents talked about the kind of support that they would like but that could be hard to come by. Some parents just wanted someone to talk to, who understood what they were going through. One couple said that they would have liked more guidance to help them through the process of diagnosis so they would not have been left to struggle.
Some parents minded that there were no appropriate support groups for them in their area. Several parents talked about not being able to get babysitters who would be able to look after their child or children and so found it very difficult to go out (see ‘Effect on relationships’). More support for siblings was also discussed by some parents.
One parent whose daughter was going to university felt that there was not enough support to help to organise this, and no-one responsible for making sure she was all right and who she could turn to in need. Another parent complained that support dropped off once the children reached adulthood.
Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality: White British.
Yes, so I think sometimes we really have to remind ourselves of that, you know, you are dealing with a child… it is like telling a 7 year old everything about sex. You know, you know what he is going to say, and everything is like that and I think we know that there are problems, but from actually knowing it and actually taking it on board and being able to see the behavioural things that he does as part of the condition, I am still struggling with that.
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. You know my first reaction is ‘don’t do that’. You know so I am still find it, me personally, some parents once they get to know that, they are very clear, they are able to adapt their answer and the way they carry their discipline. I put my hand up, I haven’t been able to do that and I think my husband hasn’t either and may be that is why we need more support. But I have been honest about it and I have told the doctors you know, I am kind of like stuck on that. And yet I know as much as I can know and I did lots of courses and things but I still can’t separate that.
I still kind of expect him, if I ask him not to do that, to stop. So it is a tricky one. I mean obviously as parents we have to cope with our own problems as well, you know, I know I am not perfect, so that has been a hard one. And I think lot of parents probably are like that, although some are able to sort of … I think the younger you start everything, I think that is the other thing, if at the age of two when they wrote that comment about him in the autistic spectrum, if we had had all the knowledge and the support and the things that I have gathered knowing now, as a two year old he would have been better at controlling the behaviour thing, because you would have put certain, you know, a 2 year old you can into play, you can distract him with another toy, you know, all those tools that they give you to do that. But when it is an 8 or 9 year old who has got a brain of a 14 year old, you know 12, 14 year old, his spelling, his maths, his everything up to 12 years old or older still, it is very hard to discipline that. So I think I have been so busy trying to prove what is going wrong that I haven’t actually had the chance to try and train myself into how to handle when you have a certain situation. We are getting there, but very slowly.
Age at interview:
Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
I never had a social worker because didn’t really know if I needed one, never knew if I needed on. My GP in London was fantastic. I can’t praise him enough, he pointed me into so many directions, I mean regarding, I didn’t know until Nicola was about eight or nine that she could have Disability Living Allowance, I didn’t know nothing about Carers Allowance, so that is the thing that is lacking. The government, there you are look, strong point, my voice has gone … the government don’t tell us, us the carers, they don’t tell us enough. Okay they don’t want to give us nothing. They don’t publicise that you can have this and you can have that and we are here to help you. Well they should. That is any government, not today’s government, that is right across the board. Okay. Edit that out if you don’t want it in [laughs].
Sorry, they don’t. They don’t tell us anything. So there you go this is what we need. We need the government, we need… I think we need a minister in charge of … You have got them in charge of education, you have got them in charge of home affairs, we need a minister in charge of carers and disability to get out there and to tell the people what we need, what we can have and then ask us what we need because they don’t do that. Well the local authorities are starting to. There is a lot of steering groups now and I have done a couple. I have been on a couple in Devon where they do use carers when they are forming papers to say this is going to happen or that is going to happen, so again a very slow process but they are starting to use us a little bit more because we are doing it and we save you thousands, and hundreds of thousands of pounds every year, so come and see us, ask us. Please [laughs].
Yes. No. the government need to [laughs] … in all honesty the government need to look at us and say well we should tell them what we can do for them. I believe in that. I am quite a capable person so I never felt I needed a social worker as such but I do think, not one that is going to be in your hair every five minutes, but maybe you could have a support worker. You might not speak to them for two years, but then at least then you could pick up the phone and say, in this situation, I don’t know what to do. Even a support line maybe, not even if you don’t have support, individual support workers, because that is very expensive to do that. But a lot of the help or a lot of the advice that we do get is charity based, sorry, helplines like Mencap and NAS, which is the National Autistic Society, not actually government funded or local authority funded.
So I think in that sense we could do with more support when we could just, as I say, you might go ages and ages and not need anything but just to say you can ring this number and say “what do I do?” “Where do I go?” “Who do I speak to?” is good. I mean a lot of families do need the more stable secure support. That is fine but not everybody does and it seems that if you don’t and you might only need the minimal support, then that is not there. They are either going to give you full blown where they literally live in your house or nothing so maybe finding a happy medium.