Many parents talked about the ways in which their children changed over time. Some parents of grown up children remarked that their children’s achievements far exceeded their expectations. For example a 19-year-old girl, diagnosed with autism when she was five, had gone through school, done some GCSE’s and three years at a college of further education. Her parents could go to a nearby pub for about an hour and leave their daughter at home watching a DVD. Parents talked about their children becoming calmer and less fearful as they grew older.
Some parents linked this to the development of their children’s understanding and improved concentration so that they could explain things to their children or prepare them more effectively for change. One parent commented: “he understands the word ‘no’ now” and this had led to fewer tantrums.
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.
And they are really good to him and actually having [grandson] has really changed Sam because no one knew what he would be like with a baby because he is not very safety conscious and things like that but he is so good with [grandson]. It is amazing. He is very caring. He picks him up. He is very good. He thinks about him all the time. Its it is very good. It has enriched Sam’s life really I think having [grandson]. He likes to push him in his pushchair and I think he understands more about humans really. Humans and how babies are born. And we have gone and it has been like, it has been really good because we have been able to talk about that. How babies are born and about sex because of [grandson] it has sort of made Sam understand a bit more which is good. Yes, so he loves his brothers and sisters.
Christine has two adopted children, the oldest, Brian, is 30 years old. She lives with Brian and Alice, her daughter's child. Ethnic background/nationality: White British.
I have got him that he goes five days a week to Autism Initiative which is a day centre for autistic people and he is doing very well. It is incredible. He has started, about eighteen months ago maybe, he has been going there three years, he started making models, making villages. He is doing the Eiffel Tower at the moment, but they are like big, like miniature villages and they look up, whatever he is going to do they look it up on the computer and then they do a printout and then they decide how they are going to do it. And when someone comes to look round Brian takes the people round, he tells me. And they found out that he likes fishing and he goes fishing. The first time or the second time he lost his rod. They got it in though. It is not his it is theirs but he actually… the fish took the rod as well.
Age at interview:
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
And as Arthur is getting older some things are easier. Like he had a huge obsession where he hated smoke, he hated smoking, and he hated people who smoked, because he, everything is very black and white for Arthur. There is no grey, there is no maybe, there is no... it either is. Or it isn’t. And he had decided that people that smoked were bad and so it was a nightmare because you know going anywhere, you know people smoke and when he was younger would shout things at them, say things to them, and if we were walking down the road and there was someone smoking he would run into the road to get away from them and all that sort of thing.
And now as he has got older, he still doesn’t like it, he still doesn’t quite understand why they do it, because to him, well it smells horrible. It is bad for you. You are going to get holes in your lungs and why do you do it? He can’t kind of understand it. But if I say to him, “Right we are going to so and so’s house. There might be people smoking outside. What are you going to do? Are you going to be okay with it?” And then leave it up to him to decide. And if he says, yes he is going to be okay with it, then we will go and if he starts I will say, “Well you said…” and that kind of thing. You have to kind of plan all eventualities and you kind of get used to watching when situations might spark off.
Age at interview:
John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.
John' Well you do get quite a lot of funny moments.
Lynne' Oh yes. Hysterical.
John' And some of the bizarre things you find hysterical. Like in the tranquil island of Iona which is just off Mull. Yes in the abbey grounds there in sort of garden of peace…
Lynne' The garden of peace.
John' Gavin had a tantrum….
Lynne' Oh yes!
John' You know, you just went into fits of laughter with the incongruity of it, you know.
John' Yes, you can have a good laugh about it.
Lynne' Yes you can.
John' It is quite innocent.
Lynne' He hasn’t had a tantrum for a while has he?
John' No those were the days of the tantrums.
Lynne' Those were the days of the tantrums yes.
John' We call them tantrums.
One mother was delighted that her sons had started fighting because that was “a normal thing to do” while another couple talked about how they were less worried about going out now because of their son was less likely to “make a fuss”. These improvements were sometimes linked to particular changes in the children’s lives such as changing schools, being removed from school, starting at a residential school, moving to a different village, or having some form of therapy (see ‘Types of schooling’, ‘Therapies’, ‘Medical and dietary interventions’). Parents noticed visible improvements when their children were in settings more appropriate for them.
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
To be honest although he is severely autistic he does have an intelligence which everybody comments on including the school where he is now. He has only been there since October so that is six months and they are astounded, that is their own words at the progress he has made in six months, in so much that, to give you example, before that he would never sit for more than about two or three minutes, if that. You know, he would sit down and then he would be up and he would be making a noise and whatever. Well they have now got him sitting and he does independent work which is just him sitting at a work station. He has a classroom to himself, but he is sat for over two hours without moving, which is, that is absolutely…. He would never do that at home. Never, you know. So the methods the school are bringing into his life have really sort of brought him on.
Daniel, a full time carer is separated from his wife and lives with his son, aged 13. Ethnic background/ethnicity: White British
He is now doing his third karate belt and he sings in a local choir. They do lots of concerts and he has got music exams from playing piano and recorder and theory as well. And he has won lots of medals. His exams are all with distinction and he has done lots of music festivals and he has won medals at those. And he has even performed in a play with a local theatre group you know on stage in the theatre with a paying audience. You know, he didn’t have a lead role, he was just part of the sort of background thing, but he managed to do that, and this is a child… he plays badminton now, plays badminton and you couldn’t even throw a ball at him before. This is all because I have done training and therapy not just national curriculum.
And his abilities are coming out. I am working on his abilities as well as his disabilities, working on both. In the school they ignore both disabilities and abilities. They ignore the lot. They just concentrate on tick boxes for national curriculum. But he has achieved such a lot, such an amazing amount, so I am hoping that one day he may be able to have some degree of independence. He still hasn’t got any independence. Although he has achieved a lot, he is still incredibly severely handicapped. He couldn’t go out on his own for example. He couldn’t look after himself at all.
Some parents also felt that they had changed in the ways in which they viewed their children and in the way they approached things like going out. As one mother said; “at the end of the day, they are just your kids and you kind of get used to the fact that it’s not as bad as that”. Another mother said “nothing is as bad as you fear.” A few parents of older children reflected on how scientific and social understanding of autism had improved over the years which in turn made individual improvements more possible.
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' And because now you know Tyler’s progression is such that it doesn’t play on my mind. I don’t think oh I have got a disabled son. What is the future going to hold for him? I don’t think those thoughts any more, because we have seen such movement and such improvement in the last two years that it is just, you know there is no telling what the future is going to hold. You know the sky is the limit. With the right support from us and the right opportunities, Tyler will develop into a very happy, well balanced adult, who has a fulfilling life. I am absolutely convinced of it. Why shouldn’t he? So you know, I think it is all about, not seeing it as a barrier to anything. If we see it as a barrier and we treat Tyler’s autism as barrier he will too and as far as I am concerned you know he is a great kid. He is worth getting to know. He has got some great qualities about him and we are very lucky to have him. So you know he is going to achieve. He is going to be…he may not be a rocket scientist. He may be, who knows?
Mark' He will certainly be a gamesworth.
Nicki' Yes, may be he will write video games for Nintendo when he is older. I am sure that would be his dream job. Games tester may be.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
And he was diagnosed with profound Kanner’s autism which is quite interesting because now he is ten, he started speaking after an awful lot of work from me I have to say with doing all sorts of things and he started speaking when he was about six and a half, something like that and now he talks. Now he never stops. You can have full conversations, albeit very limited subject matter because he can always manage to manoeuvre you back round to what he wants to talk about, but now he would probably would be assessed with Asperger's syndrome. He would be diagnosed with Asperger's syndrome and learning difficulties. But his diagnosis was profound autism, Kanner’s autism.
And this is one of the interesting things about the autistic spectrum is it is not stagnant. You don’t just stay the same. And there are a lot of parents tend to look at the [um] three-year-old that is off with the fairies somewhere and think goodness gracious this is it. I remember sitting there bawling my eyes out and thinking this is it, I am going to have a 40-year-old that is still giggling and flapping around in front of me and while some people do, there is an awful lot of change. We used to call it the auti-two-step. So you do like one step forward and two steps back. And things are moving along the spectrum in a lot of ways.
While challenges remained, the interviews with parents showed that their children had experienced positive changes in their lives over time. They had learned different communication and social skills, and begun to sleep for longer. Parents had also learned to deal with things differently as they adapted and adjusted to living with autism. Some of these issues are discussed further in ‘Messages to parents.
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