Feelings about diagnosis

A child’s diagnosis of autism can be upsetting for their parents and other family members. Some grandparents we talked with also described feeling relief because they knew what they were dealing with. Other emotions included shock, fear, denial and anger but the main feeling expressed was deep sadness as they talked about their concern for both their grandchildren and their children’s future.

‘There is always hope, till you get the diagnosis’

Grandparents’ feelings about the diagnosis were complicated because they thought about the implications for both their children and their grandchildren. For some, their own upset and grief took a second place as they tried to offer their children the support they felt was appropriate. Some people likened it to bereavement with the similar stages of shock, denial, grief and acceptance. One grandmother said the diagnosis ‘was a bombshell’. Underpinning these feelings was the gap left by them not knowing how their grandchildren were going to develop and what sort of lives they would be able to lead. One person described this as ‘a sense of loss of the dreams and the future that you had’ and said they still, at times, found the diagnosis hard to accept.

Brenda feels sad about her grandson’s diagnosis and finds the reports she reads about him upsetting.

Age at interview 56

Gender Female

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Okay and how did you feel whenever you heard about his diagnosis?

Sad. [laughs] [tears in voice] I think for anybody, you know, if you see him, and know what he’s like, to actually know and read the report about, how he prefers adult contact, how he struggles to make relationships with other children, especially boys is sad, it is sad. And the fact that he started school with my other granddaughter from my, with my other daughter, his reliance on her, to be the one, you’d say he was the most confident but and she wasn’t, but he’d want to play with her and he hang in and want to be with her friends. So those sort of things are sad. And whereas we always thought he was quite bright, they, he’s been diagnosed as just being average.

But I mean his reading is above and beyond, you know, he has free reading, because he can read any words, but it’s the understanding of them. So, those sort of things. But you know, when you talk to him and what you get back, yes, it is upsetting to know that there is something wrong, and that’s with him for the rest of his life. So I do find that hard.

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Interview 7 describes her feelings about her grandson’s diagnosis.

Age at interview 63

Gender Female

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Well at first I was sort of shocked, and I wasn’t totally sure that it was right, that they had it right. It was like a denial, you know, I wasn’t certain that they had got it right, and to be honest Ii didn’t know much about it. So I did lots of research on the internet and started reading up on it and then started to think of ways to help, because he was getting a little bit older then, and he wasn’t starting baby talk. So I then, found out, there was an American company whod had some success with autistic children with a DVD, with pictures and sound to help them to learn to talk. So at the time she wouldn’t have been able to afford that. So I ordered them from America and then sent them to her. And it had no effect at all. But later on when he was older, she played them again and he started to take a bit of an interest because it showed some of his favourite animals. I think that for a long time I went through a phase of grieving really, you know, you don’t realise it but you go through a phase of grieving and then later on you start to accept it, that that’s basically how it happens.

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Irene says ‘You’re always brave until someone says how are you?’

Age at interview 61

Gender Female

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And then the other person who really helped me, and I don’t suppose she’ll ever realise how much she helped me, was one of my friends, who I used to go, with her and her little girl, we used to go, walk down the road together to, you know, Bounce and Rhyme and all these things that mum’s do. And she was a speech and language therapist and I had asked her about, you know, my concerns, because she knew him and she saw him every day. And one day she just phoned me up and she said, Irene I haven’t seen you out, and I know your daughter’s now taking my grandson out.That’s okay, don’t worry. And she said, What’s going on? So I said, Well you know, things have proceeded and as you may expect he has been referred and has now been diagnosed. And she said, How are you? So of course, that’s fatal. You’re always brave, aren’t you, until someone says, How are you? And then of course I just started bawling on the phone. And she was round within ten minutes and despite the fact she had a young family herself. She helped me to say it was alright to grieve, at the diagnosis it was alright to grieve at not seeing him.

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

Age at interview 82

Gender Female

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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.

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A few people said they felt anger or disbelief about the diagnosis because they felt that their family had experienced enough difficulty in the past. One daughter, for example, had a brain tumour before her son was diagnosed with autism. Another grandmother grew up with a brother with Down’s syndrome.

Some people were also caring for their own parents and so had additional concerns and responsibilities. They had to make decisions about how much to tell their own parents about the diagnosis. One grandmother reflected on how optimistic her mother was about her grandson and she felt very strongly that she wanted her mother to acknowledge the difficulties he was experiencing. Other people talked about feeling frightened, because the diagnosis was ‘a bolt out of the blue and something we knew so little about’.

Jan had experience of growing up with a disabled sibling and was aware of the sadness parents…

Age at interview 59

Gender Female

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I found it really difficult. I think because I’d grown up as a sibling, so I had a, as we were saying before we started the interview I had a brother, who had Down’s syndrome. He sadly died three years ago, but he was 64. That’s quite a good age for someone with Down’s syndrome and he had, for the era that he lived in, a reasonably good life. And I think if he lived now it would have been even better, but anyway.

So I’d grown up as a sibling, and in those days, even people with Down’s syndrome were you know, like sent to special schools or residential, in his case a residential school. So I had a brother than came in and out of my life and wasn’t there all the time. And I know from my parents, you know, that, I mean he was great, but the sadness of having a disabled child never really goes away, and it repeats itself again and again, at sort of key points of your life, and for me it was very difficult think. Oh I’d watched my parents go through that all through their lives, as much as we loved [Brother] and he was fantastic, it’s still not quite the same as having a so-called normal child. And now I was going to have to watch the same with my daughter, and I found that very difficult.

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Bryan was in denial for some months after his grandson’s diagnosis and said he didnt understand…

Age at interview 72

Gender Male

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How did I feel? Well, first of all, I guess, like many people, I was in denial. The first thing was no, okay, he’s a bit quiet. Yes he’s a bit boisterous and yes, maybe not as quick as some other children to, we saw that anyway. But on the other hand, look at how quickly he reads and how well he reads, and you know, he’s well in advance of other children. So yes, all the usual symptoms of denial. Then his behaviours, his odd behaviours became, began to develop, much more clearly. And I was forced, if you like, into a realisation that the problems were not simply of other, you know, other people’s imagination, there really was a problem.

But there was a period for six, seven months, something of that sort, I think, maybe a year, where I chose not to accept the diagnosis. Now, in my own defence, if I have to defend myself, I suppose there is, there is an element too, at that time, the very word autism, was not well understood and I certainly didn’t understand it. I had no understanding of how profound or otherwise it would be, or could be. And so it was easier, if you like, to walk away. Because he was just a little odd, that’s all there was to it. And then people started putting other labels on like Asperger’s, which is where, I think, they started. I thought well yeah, okay I can live with that. That’s better than autism isn’t it, I think? And I was much more concerned about labels than I was about the reality of the condition.

And it took me a long time, a very long time to really come to what I think is a reasonable understanding now, although I have to say [Grandson] still puzzles me from time to time. He still throws a wobbly that I think where did that come from? And my understanding of his condition is far from perfect. But I am much more at ease with it now.[um] But still looking for ways of helping him. [um] And I’m not sure there are any actually and that’s the distressing part of it. [um] For me anyway, I think that’s the most distressing part of it.

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‘I just loved him all the more; I knew he was going to need a lot of love and care and attention’

For some people, the diagnosis was a relief as it was a way of accessing support and coming to terms with the grandchild’s difference. As one grandmother said; ‘I was terribly, sorry but I was pleased that we could move forward’. Several people described how over time they had come to terms with their grandchild’s diagnosis and been able to understand autism better.
Having a second grandchild diagnosed with autism was difficult for some people we talked with. One grandmother described how devastated her daughter was to get the second diagnosis.

Janet said that some people were blasé about her second grandchild’s diagnosis of autism and didn’t realise that it was more upsetting than the first.

Age at interview 65

Gender Female

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But as the little, as my grandson got sort of developing and doing things. He did everything as a normal baby would at the time, and then she started to quirky little things. And we talked about it, but it was more really my sister-in-law, being, working as a health professional that highlighted things and, and put her onto people, that you know, might be able to give her advice and help. So initially that was And then with the little girl, my granddaughter, she could see almost straight away, which was quite sad really, and people sort of think, well when you’ve gone through it with one child, it would be easier, but I think she was more devastated with the little girl because she hoped for the future for them, and it was just, knocked her for six a bit really.

And nobody really… people that she was not, not the health professionals that she deals with, but family and other people, just seemed a bit blasé about the whole thing, ‘oh well, you know, you know what to do. You know what’s going on now, you know, it should be easier this time.

But she was just devastated because two children she had, and they both had this disability. But and when [granddaughter] got diagnosed that was when she just decided to get all the information and any help that she could get.

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‘You do start to analyse your family’ The diagnosis also caused some people to think about whether they had ‘autism in their families’. The more they learnt about autism, the more they felt they could recognise traits or characteristics in themselves or other family members. For a few people, this was linked to guilt as they said they felt responsible for passing on their genes. Concern about other grandchildren, or future grandchildren, was raised by a few people who felt anxious watching the development of subsequent grandchildren.

Rebeccah started to think about the genetic component to autism after her grandson’s diagnosis.

Age at interview 64

Gender Female

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And how did you feel about the time that you found out about the diagnosis?

Initially… well obviously it was a shock. But I mean I think in a way it’s a relief by the time you find out, because, you know, you have been aware that things are different, and you can move forward, you can find out what to do. So I, I was terrible sorry. I mean terribly sorry. But I was pleased that we could move forward.

I then obviously thought well where’s it come from because it knew it had a, there was genetic component, and I could see it in, there was an occurrence in my daughter-in-laws family, so I could see it there, and then I began to realise that in my husband’s family there’s an autistic child. And also one with ADHD or whatever it is. It’s the same spectrum isn’t it? So I realised that there were these two families that had come together. But then… it is like, you know, my grandparents were cousins. We all got short sight [laughs] and in some cases ginger hair. But we’re back to what I always say. It is as it is. You can’t change things. But I was very sorry, yes, very sad.

And I think, I’ve become more optimistic. My daughter-in-law does a jolly good job of making sure he gets the very best, you know, that’s going for him. And you know, she’s on the ball the whole time. Very much on the ball, and we are in there supporting her. So he’ll get the best possible chance in life and that’s all that anyone can ask for.

And even with that, you know, I’ve recently been to, you go to school reunions where, and there were these brilliant shining stars who end up doing quite mundane things, and there were people who were absolute terrors who did nothing who end up sort of internationally famous. So, you know, none of us know really what the world holds for us, until we’re in our, I think in our mid twenties and we begin to use the skills we have or make a decision that actually we don’t want to use those skills that they, you know, we were happy doing something different.

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Moira thinks autism is in her genes and felt guilty for a long time.

Age at interview 72

Gender Male

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But one of the main things with [Grandson’s name] at the beginning was the coming to terms with the fact and the guilt that you feel when he was diagnosed.

And the whole family went through, as to well people say you try to pretend it’s not there to begin with. And then when you’re sort of faced with it, you start feeling somehow or other it’s genetically your fault. At least I did. I think I was the one that suffered most from that and I was quite sure that it was somehow my fault. My daughter tells me it’s idiotic, but there you go [laughs].

No, I just felt guilty about it for a long time. My daughter said, she’s done much more research than we have, that I think it’s a fairly natural that parents to feel guilt. I don’t see why grandparents shouldn’t as well [laughs]. You know, I think that you think somehow or other it’s your fault somewhere. I think that’s a fairly natural reaction. It takes a while to get over. You have to learn to live with it. And as he kept telling me at the time, that [Grandson’s name] was still [Grandson’s name] [laughs]. Even with a tag.

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Helen was concerned about her younger grandchild who was one when his brother was diagnosed.

Age at interview 57

Gender Female

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There was also then the concern my daughter had because her second child was not yet at the age the first one was when he was diagnosed. So she’s starting to look to see every little quirk he had. Is he, is he autistic? And then she had, she had wanted to have more children. So one of the issues that came up for them was, would they go ahead and have a third child? And they talked about it in the family and of course there were reasons not to and reasons to. And the reasons not to would be, well if it’s another boy there’s a high chance that he could be autistic. But that if it was a girl it would be a high chance that she wouldn’t be. And it would mean that sibling number two had got a normal sibling to live with, which longer term meant that sibling number two would not have all the burden of the disabled child falling on his shoulders. There would be two siblings to look after the older one should anything happen to mum and dad. So there was lots of reasons to and not to.

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Other grandparents said that they thought about what had caused their children’s autism. A few thought that the MMR (Measles, mumps and rubella) injection was somehow implicated, even though there is no evidence linking the injection to the incidence of autism. One grandmother thought that perhaps her grandson was deprived of oxygen during a difficult birth.

Helen has a lot of unanswered questions about autism but thinks that the MMR was the final straw…

Age at interview 57

Gender Female

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He’s very beautiful to look at, like a lot of autistic children are. And I suppose I look at him and think, why? You know, what’s, what’s happened? And I can understand why my daughter still has a bit question mark in her head about the MMR. Now I’ve read lots of research about it, and I know that everybody says it’s, it’s not responsible, but I’m still not completely convinced that for certain children, and there might only be the most miniscule proportion of children in the entire world but that to him the MMR was the final straw for his body. And I’m not saying that for other children of course it’s perfectly alright and they endure it and they’re fine and it doesn’t have any effect on them. But we are complex organisms and whos to say that for him this wasn’t an assault too many. And so you’ll never ever quite convince me that for him, the MMR wasn’t just the last straw for his body.

I think he probably had autistic traits. I think he probably has got some genetic thing going on, and I think that because there are some traits running down, certainly the one side of the family, but never manifested before. There’s no history of autism in our family anywhere. I suppose so I had those issues.

I also had these issues about in the [area] here where we live, there are huge numbers of autistic children. What’s that about? Because this is an extraordinary phenomenon going on here. Now, is it that the genetics of parents who produce these children can get jobs which they wouldn’t have got years ago, but they can do these jobs, high functioning Asperger’s, high functioning autistics. They’re working in the computer industry. They’re terribly solitary. They can work without too many people around them. Do those kinds of jobs of which there are plenty in this area, is that what’s driving it? Or is there something environmental going on?

And the rate of autism increase seems so huge to me that it seems to defy a normal genetic problem. It’s just too many. It just doesn’t make any sense. I’ve got lots of questions in my head, coming out from relating to him.

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