For many parents of children on the autism spectrum, life can seem very different and distant from the experiences of many other families and it can be possible to feel that there is no way that they can ask for or expect other people to understand their experiences. Things can become easier once the child has been diagnosed but even then what is available in the way of support may be very limited.
Parents we talked to described the importance of being able to attend support groups for parents of children with autism. These groups offered a place for parents to share experiences, to get information and advice, to make friends and, in some cases, campaign for better services and provision for their children. While these groups were mostly for parents of children with autism or Asperger's syndrome, a few parents attended groups run by carers' organisations.
Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality: White British.
I can understand how professionals sometimes feel a bit intimidated with a room full of these parents, because you know they think they are going to attacked… because everybody is very passionate about it. And it is very difficult not to be emotional about it, because it is your child that is in question. But I think the main thing these parents need to do and I really recommend it, is to be part of a group, you know you can set up your own support group and really be voiced and heard as a group rather than individual cases and we have gone to meetings with county and everything and we have written bullet points of the difficulties we are having so that will keep us in focus with the subject. And we try… you know occasionally we have had to give an example of one of our children, but we try not to get personal as well. I think if you are in a meeting and you start getting very aggressive, it just goes wrong. You need to be very professional and I think if you are not able to do that just yourself, there are groups out there that can help you. There are representatives that can go and speak for you, you know. The groups that you use to be able to do the statements for instance, you know there’s legal centres as well, children’s legal centres and things like that that they can just advise you and be able to put some order in all the issues that you have.
I think because we have so many issues that it is difficult not to start sort of blurting them all out at the same time and everybody giving their example of you know, they went to school and the headmistress did this, and you know so you need to really contain it in a very sort of professional manner and then sort of discuss it like that and you get a bit more input on it.
A lot of parents highlighted the importance of talking to other parents who had similar experiences and many had made friends with other parents through support groups. As one mother said “You don’t have to start at the beginning explaining everything and they won’t judge you, they will help”. Parents also talked about how speaking to parents who had been through the same thing offered them “a light at the end of the tunnel”. Some of the support groups also arranged activities like screenings at cinemas, swimming and bowling which parents liked because “you are with all the people that are like you” (see ‘Going out’).
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
The support group, [name of support group], it basically started out as a parent support group, and quite a smallish number of parents just meeting once a month of an evening in a church hall. And just kind of like a social group and we would all share experiences, you know, “this has happened at school” and “what should I do?” and there is always somebody who has been through it who is able to help you. The group has really grown over the last couple of years and it is amazing. Every month there is a new family and they came with the same old story, we all come with. Everybody still seems to go through the same hell basically and again primarily school related; lack of understanding in schools.
We have recently just registered the group as a charity and we are really trying to take the group forward. We have lots of big ideas about education and awareness, getting some training in the school, support for the over 16s of which there is none at the moment, things like respite care, social work teams, just everything and anything really. We just want to basically raise awareness and help our children and future generations and particularly our children for when they are older, when they leave school or become leaving school age. So yes, lots of work to be done.
But yes that was a really good source of local support, to exchange ideas with families, you know have you tried the diet, have you tried this and just people you can phone, and people who know what it is like, people who know, if they come round your house and your kid kicks off that is okay and we can just leave and you don’t have to excuse any behaviours or you don’t have to say “oh sorry, he won’t do this”, but … that is lovely you know. There is nothing better then not having to explain it all away. That is really nice and from that Callum has found his own friends who are like him so he doesn’t feel strange and he just has fun like other kids have fun with their friends you know that is lovely that he has actually had a bit of happiness for the first time in years I actually saw him laugh you know, and it was just lovely. Why shouldn’t he have a friend, you know? Brilliant.
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.
Do you get any respite care?
I have not at the moment because I have not really looked into it, because there is so little I think it is something that we are going to need to do. I mean my family want us to go on a weekend so they are sort of building up to Louis and Georgia staying with them so we can go off and sort of have some free time and be a couple again [laughs]. But I mean, yes, because it is quite new to us, you know we have only just sort of gone through the stages of getting them into school, statementing and all that. But we have had sort of, we do a lot with the support group, [name of group]. They do like sort of a playgroup that we go to. It is on a Saturday and my brother comes and my mum and dad come, you know, it is the whole family is welcome to come along and that is really nice because you are meeting other families and you talk and the kids are all ages.
So you go along and you are sort of tearing your hair out because your child is smearing pooh or something and then you talk to the lady sat next to you, whose child is sort of three or four years older, who has gone through it and they don’t do it any more and they can give you tips and advice, you know, and you realise it is not going to go on for ever. And they arrange trips day trips. We go to, you know they have playrooms in the pubs. We sort of hire the room just for our group so all the kids are autistic and their brothers and sisters as well. They can all run around and nobody is going to you know, you are not in that environment where other people are sat looking. You can just go and be yourselves and they are the days you can sort of sit a bit and chat to the other parents because you know, you know, you know that no one’s is going to be shocked by what they do. Yes. Sort of trips and things.
I try to get to see speakers and things and training and stuff but I have not gone into respite care yet. I am a bit reluctant really because they are so little. I feel like it is my job. But you know I am probably going to have to at some point. You know just to get a break really.
A few parents we talked with had set up their own support groups because there were none in their area. Sometimes speakers were invited to meetings while at other times, the meetings were for parents to talk to each other. Speakers who were themselves on the autism spectrum were important to some parents who felt that this gave them some idea of what their children could achieve.
Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.
So I quickly drew a blank with services, so I thought if it is not there I am going to have to do it myself. So I I went to the local CVS, Council for Voluntary Services and said “I want to set up a group, can you help me? How would I do it? I put an advert in the paper and I said, “Do you have a child with Asperger's. Would you like to meet to set up a group?” and about 40 people turned up. I got a shock because first of all I didn’t realise that … I was expecting people with children my age, the children’s age to turn up, but there were people who turned up who had adult children with Asperger's who had no help either and then there were other people.
The majority of the people I would say wanted something for the children. They want help. They wanted a break. They wanted respite. They wanted the children to have friends. They wanted, you know, stuff for them, because they were really worried about the children and as carers often you are the last on the list. But I, with my background being social work I didn’t feel I could take on the children’s side of it because for a start you would have to have Child Protection Policies, you have to have police checks. It would be a big job.
What I wanted to do was start with the parents try and share information and I thought if we did that the children would be benefiting anyway and we need to know a lot more about how they are and feed it back to the schools and feed it back to the doctors and families and not let the parents feel that it is their fault, because it is no one’s fault. I mean you get parents who come to the group who are looking for a reason ‘why did it happen to me?’, ‘what caused it?’ Well I realised very quickly after I had the diagnosis for Joe, I didn’t care what caused it. I didn’t care at all. All I cared about was how was I going to get through the next day? How was he going to be the most he could be? And I thought he is clever he is not going to waste it.
I am going to make sure that doesn’t go to waste and I am going to tell him as soon as possible, when he wants to know, you know, I wouldn’t just tell him he had Asperger's but as soon as it arose, I was going to tell him what Asperger's is. I would be ready and then I will make sure that he doesn’t feel, although it is a disability, I didn’t want him to feel that he wasn’t able and at one point in our group we did have a discussion about disability and none of us liked the word. But of course most of us claim DLA for the children, so you are used to thinking in a disabled way. But we decided we liked the term differently able, because they are. They are very capable in a lot of ways, very undervalued in a lot of ways and then we wanted to concentrate on positive things, not just negative things because when you know children with Asperger's - and I have known quite a few now, and adults - they can be very refreshing, completely loyal, refreshing, different side of seeing things and really good fun to be with as well. When you know what they are like.
Age at interview:
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
Within 15 months we became a charity which is virtually unheard of from a little support group. We actually got charitable status. But I think we just immersed ourselves in everything. Went to every meeting, you know, of anything, to see well what is there out there and we have evolved now and we are now a company limited by guarantee. We have changed our status you know and so we have got lots of project, we have got lots of … we have had lots of grants, money, to support the group because our group does a lot of, we do a lot of things. We are not just... Do you want to talk about that?
We have got about sixty families registered. They don’t always come at once. Which if you come tonight they won’t all be there and some families have more than one child with autism. Sometimes their parents come on their own. Our group is unique in that, inasmuch as it supports the whole family. It is a support group for the parents, for the siblings and for the special needs child and for the extended family, so grandma is involved, or auntie Jean they come along and they are part of our group. So, so and then we provide activities, like tonight, this is the Council’s own building and they let us have it. But we go out. We go out to swim. We pay for everything. The parents don’t pay for anything. It is all raised by donations and grants that we raise ourselves.
We go on a holiday for a weekend and there is 105 people coming. It is all paid for, coach, it is Pontins we go to in Lytham St Anne’s by Blackpool. It is all paid for. Coaches there, we hire a coach for the weekend, we have activities when we are there. We go to the zoo. You know we just go to lots of different things. It is all paid. We have about 12 outings a year and we pay for everything. We will go to Chester Zoo. Now it is about nine quid each to get into Chester Zoo and we take about 90 people, so it is a lot of money. They have got to provide their own lunch but certain things we go to we provide food, you know, we have Christmas parties. We provide all the food activities. Trampolining, swimming. We do everything, so… but it is a way.. the parents can come out and talk to each other about… in a sense it is like the gripes isn’t it. You can say well, “Its been terrible month. He has been terrible this week or he has been okay.”
But it also helps them because we can pass on, the networkings there you know, we can talk about, we have helped a lot of our families to get Disability Living Allowance, Carers Allowance, because they didn’t realise they could get it you know. You know we had one lady who worked in Asda, and we actually got her, she worked four nights a week but that took her over the threshold of getting Carers Allowance. So we said, “If you give up two nights a week. You will actually end up having more money because you will get the Carers Allowance and the DLA.” So she is actually not working four nights a week any more, she is only working two nights. So that is better for her and she is better off. So that is being a financial advisor that does help, you know, well it does, because you can tell about tax. That is what it is all about. And I didn’t get any money for that. It was all free.
Age at interview:
Caron, a full time carer, and her husband have two sons; Leo aged five and Peter aged 2. Ethnic background/nationality: Mixed race.
I go to support groups. I have two support groups. One is, it hasn’t really got a name, it is every Tuesday I think… every last Tuesday of the month at the Masonic Hall. And we all go and sometimes we have speakers in like dieticians and sensory diet people from the educational authority, psychologists, that sort of thing. But I don’t really get a lot out of it like in terms of understanding more. It is almost like it is just good to be around other people that you know are dealing with the same stuff. And I have made friends from that group. I have made two good friends and they have got children the same age as [son] so it is nice to be able to meet up with them. And all the children spaz out as much as they want, instead of meeting with people that have normal children, and they are like ohhh, what is he doing? You know, so I like that. And we can talk about the eating problems, the sleeping problems, school problems, friend problems, and they understand. So I like that. The other meeting that I go to is a Speak Out meeting and that is quite a good one. It is very informative. It tells you about groups that are being run, you know parent help groups, child help groups. It tells you about any benefits you might be entitled to, if they do any holidays places where you could take a child with autism, that sort of thing, so that one is very informative.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
So I had a committee meeting because I founded, after I got the diagnosis for Nicole, I actually one of the first questions I asked was is there a local support group and was told no. There was nothing, nothing at all. I have since found out that there is a support group run over at [hospital] but that is usually for parents of children with pre-school, of pre-school age, whereas when we got the diagnosis for Nicole she was ten which is quite common in Asperger's. I think the average age for diagnosis is about 9, 10 because of their verbal ability it is not picked up on as early as classic autism so early intervention for children with Asperger's is not something that usually occurs.So I actually started my own support group in [town]. I have got we have got about eighty people on the books now.
Age at interview:
Nick, a design engineer, and Vikki, a teacher, have two sons aged 10 and 8. Ethnic background/nationality: White British.
Vikki' It is. It is more so for the females amongst us because Nick does feel a bit intimidated so he gets banished to the kitchen to make teas and coffees.
Nick' If you can imagine a situation that you would least want to put a autistic person into where you have got a group of about fifteen people all talking across that is what it is like.
Vikki' But it is one of those cases where you can just sit down and tell your stories to an audience who have been there, seen that, done that and can offer advice or a sympathetic ear. Because you know Peter could have done something in the morning and hurt Tom or hurt me, emotionally, physically, got on the bus, gone to school, had the meeting in the evening and then you are laughing about it, where in fact at the time you are probably crying about it. You couldn’t cry because you had to go to work and then you had to deal with other problems at work and so you still haven’t dealt with it and then coming back and having these people here to listen to what you were saying and ultimately you end up laughing about it. You say, “Hold on a minute, he kicked you, my story is …” And the stories get more and more complex and you end up laughing about all of them. And it is sort of a very comfortable way of sharing information, sharing experiences.
Nick' I find it quite amusing because they basically go round [town] twice, you get to host two evenings. I will go and sit in the other room and you hear the same conversation over and over again, because people go round in circles. And find it quite amusing I really do. I have half tempted to come as a waiter because I have to manage all the teas, and come in just stark naked with just a apron on just to see if I can draw some attention away from all these women gossiping but I am forbidden from doing it [laughs].
What sort of thing do you do for support then?
Nick' Well my wife. I talk to people at work about it. Not so much in my new job. I have been in the new job six months and don’t really know people that well. I have got a good mate who I go out with drinking once a week and I chat to him. But I don’t know. I am a lot easier, I don’t think it affects me quite as much as it affects Vick. It is I don’t feel I need a huge amount of support. I am a bloke. So … it just doesn’t seem to worry me or faze me quite as much I don’t think.
Some parents described how their groups had developed a more active role and they produced information packs, gained charity status and actively campaigned to raise awareness.
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
I help run a parents support group for parents of children with autism and Asperger's and as part of that we had a representative from the Council come who is responsible for the leisure strategy in [town] and we were very keen to put forward our views as parents that there is very little in terms of special educational needs leisure facilities. There’s no holiday clubs for children with special needs, there is nothing like that. A lot of the pools in [town] have split changing rooms and no family changing rooms which means that once Tyler becomes eight, he needs to go into a changing room on his own. That is just not possible. He just won’t do it. He will get distracted. It won’t be that he can’t do it it will be that be that he will in there and he will wander round and he will think oh showers great fun and stand in the shower. It just won’t happen.
So we have put all those issues to her and she is considering those as part of the strategy. So we raised a number of other issues, you know there should be holiday clubs for special needs children, there should be trampolining if we want it. And Tyler loved that. And it is such a shame that he can’t do that any more. They need to accommodate the growing number of children with special educational needs in [town] so we put that forward as our views.
A few parents talked about how valuable sibling support groups were. One daughter had been on an adventure weekend and her parents described how “it’s great because it gets her away doing something that she loves doing and meeting other kids in similar situations”.
Many parents talked about how useful they found the National Autistic Society (NAS) website and some parents attended local NAS support groups or training courses, such as Early Birds and Help! which they had found useful. Online forums were also a valuable source of support for some parents. One parent described how she thought she must be the only parent in the world with a child like her son but found through forums that his fears and concerns were not uncommon.
John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.
Is there anything that you would recommend to people that you have found really useful?
Lynne' …oh the most useful thing I found was the internet support group to be honest. That was the most valuable thing I found. When I first discovered the computer, there was a British autism group, I haven’t joined for a while, I have lapsed. I have had my head in the sand for a little bit [laughs] but I thought that was wonder.
John' Do you mean NAS?
Lynne' No I don’t NAS. No. It was it was autism support group on the internet.
John' Oh right. Yes. Hm. Hm.
Lynne' And you could be in daily conversation with people, other parents - professionals are on it as well - and there was always this chat came backwards and forward and that was the biggest, I would say, the biggest help to me ever was finding that. Better than any book or anything I have ever read. Much more so because all these kids are individuals and you can’t… it is like a blind person, you can’t say that all blind people alike, and that is an obvious one, well autism is the same. They are not all the same, so what you read about one person isn’t particularly helpful to you. So…
John' Yes, and, and, no.
Lynne' So that is what I found the most helpful was the internet support group, you know, where I could, you know, you chat to somebody every day or three times a day or, you know, whenever, You would always email back or, there was always something going on. Much better than anything.
Some parents had not got involved with support groups for various reasons. Some parents didn't feel the need to, or hadn't thought about it. One mother differentiated between ‘chatting groups’ which she hated because the focus was always on problems and more ‘analytical’ groups which were more about providing information. One mother described an unsuccessful group of parents of newly diagnosed children which was “like AA Anonymous; my name is x and my son has autism”. Another mother thought that support groups were for “people in crisis”.
Some parents did not have groups in their areas or the groups that existed were aimed at particular groups such as children with lower functioning autism or older children or the meetings were held at times that were not convenient to them. One father found less common ground at support groups because of his son’s hyperlexia. For some the logistics of finding someone able to care for their children at home made attending meetings impossible.
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
And then you are told to go to parent support groups. Well the parent support groups meeting during the day and I work full time and they don’t meet in the school holidays. Well usually I work in the school holidays as well or I have got the children, they don’t meet in the school holidays. So parent support groups whilst they are valuable and I have certainly borrowed books from different organisations, its not helpful to people who work and I know a lot of people whose children have autism, you know, don’t work, but when you are a lone parent you have to work, even, if you know I don’t have a choice, I have to work. But there isn’t other than ringing up helplines I suppose which I haven’t tried yet, but there isn’t anywhere where I can get that support, so you just have to struggle on.