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Dorothy: Interview 06

Age at interview: 82
Brief Outline: Dorothy's grandchildren, Lydia, aged fourteen, and Edward, eleven, were both diagnosed with ASD when they were each about three years old.
Background: Dorothy is a retired teacher. She lives quite close to her daughter and two grandchildren. Ethnicity/nationality: White British.

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Dorothy sees her grandchildren a couple of times a week and describes their relationship as “very close”. When Lydia was diagnosed, Dorothy reported it was like a “bolt out of the blue” and that she “just wanted to cry all the time”. During this time she found writing poetry therapeutic. When Edward was diagnosed with autism this came as less of a surprise because they had experience of autism. 
 
Dorothy and her family decided that they wanted to use Applied Behavioural Analysis (ABA) to help the grandchildren. Her daughter felt it was the best intervention after researching on the internet. They as a family were trained in ABA. They also paid to have some tutors, including girls from the local college, trained in its use, who, in turn, became the children’s therapists. Dorothy said they saw the results on the very first day when Lydia said “Mummy” for the first time. She describes their reaction to this as “total euphoria”.
 
Dorothy sees her role as being “a complete support” for her daughter. She has a supportive network of friends with whom she could discuss her problems and joys. However, she feels it would have been nice to talk to somebody in the same situation to learn from their experiences which could provide them with the encouragement that her family can do the same
 
Dorothy described her experience as “like a roller coaster” because there have been “terrible downs” and “quite a lot of highs”. She thinks the best things about her grandchildren is their sense of humour and that “they’re both very, very loving”.
 
 

Dorothy'’s granddaughter became very distressed in supermarkets and danced “like a little fairy on...

Dorothy'’s granddaughter became very distressed in supermarkets and danced “like a little fairy on...

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Well they were both lovely, beautiful, bonny babies who seemed to be doing everything in the right order until, with [granddaughter] we became very aware when she was about two years old, that going into a supermarket was a nightmare. And we now know of course, the sensory onslaught that a supermarket is for people on the autistic spectrum. 
 
She immediately screamed when we went into it, and we could see no reason for this whatsoever, and obviously couldn’t understand it, and did all we could to accustomise her to it. By going again and giving her little rewards and so on for going, but she always hated it, and still does, in fact, something that we haven’t quite got her accustomed to even yet. 
 
 

Dorothy’'s grandson got very distressed about people coming to the house while his sister was very...

Dorothy’'s grandson got very distressed about people coming to the house while his sister was very...

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But at again, at about the age of two he started showing completely different symptoms. He hated people coming to the house. Even us, who visited quite often. We weren’t living within walking distance then. We were 150 or so miles away, but we were still visiting regularly and he knew us. If unknown people came, or even us, or visitors of any kind came to the door he would throw himself to the floor screaming, and would only with great difficulty be persuaded to come and, not even to come and talk to us, but even to stand up and play normally.
 
Well they are funny. They’ve both got a sense of humour. That’s again, I don’t know if that’s particularly common in autistic children. But they are, they are both funny. 
And they’re both, very, very loving. They have never really been distant from, from us. 
[Granddaughter] will always come and see visitors. She will then just having seen them and said hello to them, given them her lovely smile, will then quite happily disappear again and not have anything to do with them. But on the other hand she is, [Granddaughter] has an instinctive way of knowing, I think, whether people really like her or not.
 
 

Dorothy wanted to cry all the time and couldn'’t sleep. In the day time, she had to reflect on...

Dorothy wanted to cry all the time and couldn'’t sleep. In the day time, she had to reflect on...

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And so your granddaughter was diagnosed first. Can you remember how you felt at that time?
 
I just wanted to cry all the time. I couldn’t sleep. I wrote poems about it and I found that was a way, a cathartic way of dealing with it. But, but I mean the sleeplessness and the writing poems and things and crying were of the night, as it were, and in the day we had to think what we were going to do. We had to learn how to adapt to it and to, and if we were going to use this therapy and spend money on this therapy we had to learn to do it too, so that we could do it for nothing. I mean, and as I say the principle is inclusion. 
 
 

Dorothy’s grandson will play games with her, and it “grieves” her a bit that her granddaughter...

Dorothy’s grandson will play games with her, and it “grieves” her a bit that her granddaughter...

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And whenever you have them, whenever you’re minding them what kind of things do you do together?
 
We do [grandson]’s very keen on jigsaws and any kind of games he likes. He likes draughts and any other game that you can dish up. [Granddaughter], I suppose has always played these games. It is, it does grieve us a bit that she doesn’t want to join in with these kind of games. She did as a little, as a little one. I suppose we used to make her and now, we do feel we have to respect her choices in these things. I mean, she may not, act like a fourteen year old, but she is now fourteen and you, you can’t have the same expectations as you did for the five or six or even seven or eight year old that she would come and join in family games round the table. She quite enjoys them when on the rare occasions when she does do it, but she doesn’t choose to do it. 
 
She’ll sometimes come and read to us. She, she loves, she loves reading to us in all sorts of different voices, and dramatising, dramatising the voices. I suppose we’ve always read to her, I mean they’ve both been read to since they were very, very small, and of course one exaggerates the voices and dramatises the story and she loves doing that. And I think it’s very good that she does read, she reads to other children. Not only at her special school, but she reads to other children at she goes one night a fortnight to respite to a… and there are obviously other disabled children there and she apparently reads to them.
 
 

Dorothy’s grandson said that people at his primary school would remember him as “weird”.

Dorothy’s grandson said that people at his primary school would remember him as “weird”.

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There is a place where they can go in the secondary school, which is good. There is a games club every dinner hour and some of the more geeky children do go to it, and the children who can’t bear the playground. But Edward loves the playground. He likes. He loves football. He’s very sporty, he’s good at sport. He wants to be there. He wants to be part of things. He wants to be in with the other boys, but they don’t always want him. He in fact told us, that they were asked when they left their primary school how people would remember them there, and he said, “They’ll remember that I was weird”, which is sad really.
 

Dorothy found out a lot of information through her daughter and also through working with...

Dorothy found out a lot of information through her daughter and also through working with...

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And thinking back to the time that Lydia was diagnosed because she was the first one who had her diagnosis. Did you know much about autism at that time?
 
No, nothing. No I don’t think I… I suppose I’d heard of it I don’t know.
 
So how did you go about finding out about it?
 
Really I’d got it second hand from my daughter largely, although, though she did put books in my direction and I did read. I have read some of the books. But it was partly working with the supervisors and people on the ABA programme that taught you a lot. It taught me a lot as a teacher actually. Because what I feel about the ABA philosophy is that it is good parenting and good teaching writ large because it’s completely consistent. You’ve got to be absolutely totally, minutely consistent. And that’s good when you’re dealing with any child really.
 
 

Dorothy wants to let other grandparents know that the principles behind Applied Behavioural Analysis (ABA) work.

Dorothy wants to let other grandparents know that the principles behind Applied Behavioural Analysis (ABA) work.

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And how would you tell another grandparent that was in the same position as you what it was like?
 
Well I would just really tell them my experiences, and tell them that the principles that we’ve used of ABA do work really, I think. That you can calm a child with a tantrum. And, as I say, if ultimately you can’t calm the child then you can deal with the… I mean if the child’s having a tantrum at home, it doesn’t really matter, you can take all day to sort it out or you can, you put it on extinction which another of the methods used in the ABA therapy of totally ignoring if a behaviour, because I think a lot of parents, make too much of bad behaviour sometimes by reacting extraordinarily to it. You can sometimes best deal with bad behaviour by putting it on total extinction, that it doesn’t exist, this bad behaviour. We don’t respond to bad behaviour in any way at all. And you get the child who wants any kind of attention, even to be told off for something. So ABA does use this extinction you know, ignoring bad behaviour, by, by distraction, you know, not by there being silence but by distraction. Turning to something else totally different. You haven’t even heard that terrible noise. And you know, there are lots of very useful devices to save your own frayed nerves as well as calming the child. So again distraction is very good.
 
 

Dorothy hopes that her grandson will meet someone who “appreciates his sweet nature” and that her...

Dorothy hopes that her grandson will meet someone who “appreciates his sweet nature” and that her...

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And what do you see for your grandchildren’s future?
 
I mean Lydia’s life will have to be in some kind of controlled unit, hopefully a little, a little group home or something of that kind. And Edward I hope will, I hope... I hope he will continue to progress through his secondary years and find, I’m sure he’ll find a job of some kind that he can do. And it would be nice if he could find someone who could appreciate his... sweet nature. 
 
The big worry for Lydia would be that without people like us, sort of stimulating her, she would be quite happy to live in a world of one room and her computer. Despite the fact, that I think, you know, she does enjoy our days at the seaside and our days out and her holidays and so on. 
 
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