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Parents of children on the Autism Spectrum

Feelings about a diagnosis of Autistic Spectrum Disorder (ASD)

Parents experienced all sorts of emotions when they received their children’s diagnoses, including relief, shock and, for some, a sense of bereavement for the child they imagined they would have. Many parents felt relief because the diagnosis gave a name to what many of them knew was different about their child/ren, and gave them “something to work with”. Some parents felt relieved because getting the diagnosis had been a long, difficult and frustrating process during which they felt ‘blamed’ for their children’s developmental delay or for being ‘bad parents’.

 

Paula felt “incredible relief” to get the diagnosis as she had been questioning her parenting...

Paula felt “incredible relief” to get the diagnosis as she had been questioning her parenting...

Age at interview: 40
Sex: Female
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The report from [doctor] I felt incredible relief because you know, if people tell you that you are a shit parent often enough you think you are. I mean I kind of knew that I wasn’t, you know, I don’t drink, I don’t smoke. I don’t take drugs. I don’t do any bad things. I always think about my kids. I always try and enable them. So I know that I am doing the right thing. But at the back of my mind I was thinking is it because of the divorce? Is it genetic? Is it me? Is it you know, what have I done wrong? Is it because I went to a wedding when I was pregnant with Alex and I drank? Is it that? Have they got fetal alcohol syndrome? Have they got this? You know you are forever sort of trying to justify your own existence really when you have kids with special needs. I think that is what it is all about really.
 

Bobbi describes getting the diagnosis as ‘light bulb moments going off all over the place’.

Bobbi describes getting the diagnosis as ‘light bulb moments going off all over the place’.

Age at interview: 38
Sex: Female
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So I think that when I realised that early on Charlie was unbelievably brilliant at numbers, really good at numbers, and had a real affection for languages that were ‘sing songy’. Things like that then, I don’t know just something snapped and I just thought ‘yes maybe’ and googled it and brought up a load of stuff. And I think it was through the National Autistic Society first that I learnt mainly about it. And a lot of things made a lot of sense, a lot of sense. And then to get the diagnosis for that one day with all the doctors there, it was like ping, ping, ping, like light bulb moments going off all over the place and it was a real relief to be honest with you, it really was, because for me as a mum it made me feel like I did understand my son. Because for a lot of years I didn’t feel like I did, you know, may be not years, but for a good space of time, I really didn’t think I understood him at all.
 
Well we were at the worst before this place. We were in a smaller flat and like I said he was smearing and things like that, I really didn’t think… I thought I was the worst mother on the face of the earth at that time. It was horrid you know. And to then feel like okay, no, it is not your fault and yes you are right, actually, you do understand your little boy. You are on the right track. It was like, oh thank you, you know, okay, it sort of re-affirms you as a mum again. You feel like okay I am on the right track. I may not be the best mum in the world but at least I am heading in the right direction.
 
And how did your partner feel when you got the diagnosis?
 
The same. Same. I mean David and I are unbelievably close. He was literally born a year and a day before me. We are like two peas in a pod as well. It is funny very, very similar, very different, he is very more… I am very outgoing, where he is very, very laid back. And everything that I sort of researched was, you know, either being passed on to him, or he was researching as well. And we were coming to each other and the end of the day and saying, “Well may be it is that. Or may be it is me.”
 
Oh your partner was …
 
Yes. Yes. We would come together. And he was like well may be it is this, or may be it is that, or may be it is the other thing. You know. And, and when we went to that, that session with all the doctors it was really good because we were on the same wavelength and they kept saying to us, “Well you are going to feel that it is a shock, after the diagnosis, you are going to feel a little bit…If you have any questions come to us.” And David and I were just like, “Actually we feel utter relief.” More like phew OK, we are on the right track, you know, we know now that everything we have been looking up, we know probably, well not as much as they did in any way, shape or form.
 
But you know at least we were at the beginning of totally understanding and we sort of accepted at that point that there was something going on with Charlie without a doubt. You know so there was no shock, there was no sadness, depression, or any of that after the diagnosis except for OK well now I have something to work for. Do you know what I mean?

Several parents also felt relief because they thought that getting the diagnosis would enable their children to access appropriate support and services both within school and more generally, although this was not always so. Some parents also described expecting the diagnosis because they had done their own research and were sure that their children were on the autism spectrum.

 

Sandy read a leaflet and found that Joseph had about seven of the eight autism traits listed so...

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Sandy read a leaflet and found that Joseph had about seven of the eight autism traits listed so...

Age at interview: 38
Sex: Female
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I think really if I think back I knew there was something not quite right from then. He started at the speech therapy and had been there a few weeks and one of the other mums, her child was in the speech therapy group as well. She said to me, “Do you think Joseph might be autistic”, and I said to her, “I have never even thought of it”. Which I hadn’t. I mean I thought obviously by then that with him being in speech therapy, I thought that there is something that is not right, may be he has got learning difficulties but autism is a condition I hadn’t considered at all.

 
And then I started looking into it after I spoke to this other mum and I picked a leaflet up from the library and I think there are about eight different sort of criteria, sort of traits of autism that are listed and then realised that Joseph had about seven of them. And I thought well he must be. So in a way when we actually got the diagnosis through from the paediatrician we kind of prepared ourselves for it anyway. We were quite expecting it I think and from then on that meant that we knew what we were dealing with. It must be so frustrating for people to not have a diagnosis for the child’s condition as well. Because I think if you haven’t you don’t really know what you are dealing with but as soon as you have you can start looking into how is it going to affect them. What can I do to help, how can I start to understand what they are doing, why are they doing things, why is Joseph, you know it is sort of why is Joseph spending hours just lining things up and it was just his way of getting a bit of order into his life I suppose.

One mother, whose daughter was diagnosed with Asperger syndrome in adulthood, described how she was relieved to get the diagnosis and although the problems were still there she had become more accepting of her daughter’s behaviour over the years.

 

Dot felt the diagnosis would make everyone take her seriously at last and when she got home...

Dot felt the diagnosis would make everyone take her seriously at last and when she got home...

Age at interview: 48
Sex: Female
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I went to see the doctor. She had an assistant with her so I could talk to her and she would be working with Joe at the side and they were trying to get him to do some art work but within that whole assessment which was just over an hour, I think, an hour and a half. She said, “Oh he is clearly Asperger's.” And I just wanted to jump up and kiss her because I thought, “Thank God for that.” I know … I thought it was Asperger's after doing all the reading and thought, “Oh at last.” So I said to her, “Well what happens now?” And she said, “Well he has got Asperger's, you know, go away think about it.” You know. I said, “Will you help me with the school because the school don’t believe there is anything wrong with me. They know he has got problems, but they haven’t got the right idea about him.” You know.
 
And she said, “Well go home, let it settle down and we will see him again in a month’s time or whatever.” And so that is what I did. But I was really, really happy. I rang everybody as soon as I got home. I felt like I had to prove that I wasn’t going mad, you know, people think that you are just making excuses. People think that you are not disciplinarian enough but one of the things that I really was glad about, I mean people have different views about smacking children and disciplining children and things, and I always really didn’t ever want to smack, but there were times when Joe was just like lying on the floor in the supermarket, because he wouldn’t come in, he didn’t like the lights, he didn’t like, there was lots of things, the noise, you just feel like smacking his legs or something but I didn’t obviously but I thought after that diagnosis thank goodness I didn’t do anything like that because the guilt of having punished him for doing something that he can’t help, I would have felt absolutely awful.
 
I mean I felt bad enough as it was because I didn’t know how to handle him, but then I thought well how would I know how to handle him? Babies aren’t born with instruction books. You don’t know how to look after them and I didn’t know anyone who had a child with Asperger's. So you know as well as for Joe because I thought this is good now. He will get help. I also thought, “Now people will take me seriously. I can explain to them what Asperger's is. I can explain to Joe what Asperger's is. We can move forward now. I can’t wait to get my hand on all them services.” [laughs] So I really celebrated that night.
 

Carolann felt vindicated on receiving the diagnosis because she was not “mad, bad or sad” and...

Carolann felt vindicated on receiving the diagnosis because she was not “mad, bad or sad” and...

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When you got the diagnosis can you remember how you felt?

 

Oh relief. Vindication because I had been banging on for fourteen and a half years that there was something wrong. And everybody I spoke to, literally everybody, said, “No Mrs Jackson, there is nothing wrong with your daughter. It is you. You are a bad parent. You know, you are letting her have too much freedom, you are not giving her sufficient structure, you know, it is down to you.” So when I got that I thought yippee. I am vindicated. I am not mad, bad and sad and nor is she. And I remember feeling such a… I almost felt like leaping for joy and telling the world that my daughter, she had got a medical condition. She was not a loony, weirdo nutter, you know with a mental health condition. She was a child who had a medical condition, like deafness or blindness or whatever but it just happened to be Asperger's syndrome.
 
The irony of it was, that when I did, I think I said earlier on, when I did actually go back to the Child and Family Consultation Services and say she has got a diagnosis of Asperger's, they didn’t believe me. The first thing they said was, “Oh she can’t have because she is too clever. Only people with learning disabilities are Asperger's syndrome.” That was the level of understanding, about eight or nine years ago here. That was the level and that was generally thought to be the case. But then of course I was able at that point to get involved with the children with learning disabilities, the children with disabilities team. I had to push very, very hard for that. And the reason why that happened was because well something very bad happened to Nita and they took her on the team and then later on she was transferred to the Mental Health Team for Adults, where she is now. Although bless ‘em they are lovely people but they have had no training in Asperger's and they freely admit they don’t know how to deal with Asperger's people and even if they did, the services which they would hope to provide aren’t there, because there are no resources, no money.
 
So the sort of things which would be like befriending, social skills training, independent living skills training, supported employment, all those sort of things that other people do and take for granted or are available to learning disabled groups, academic learning disabled groups are not available for Asperger's, because they don’t fulfil the criteria. They are above the magic 70 IQ marker. Therefore they fall off the scale, you know, and I keep trying to say to everybody I can; “There is no link between intellectual ability and daily life performance. Absolutely none.” I mean as I said, she could write you an essay on you know the Influence of Postmodernism in the Twentieth Century on whatever, but she can’t cook herself a meal. She can’t, she is dyspractic, she can’t do up her shoelaces, you know she can’t see the health, the muck and mess she lives in and if she does see it, it doesn’t bother her. So basic things which someone with an IQ below 70 would be able to do, some things like that she just can’t do, despite an incredibly high intellect and it is getting those two sides of the coin together for people to understand this is what Asperger's is. It is intellectual flair with very, very low daily performance. So that is the answer to that way. I felt vindicated yes.
 

Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved...

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Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved...

Age at interview: 60
Sex: Female
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And then in year nine, I think, the Easter of year nine, I went in for a meeting with her SENCO and she turned, I was really up to it, I really couldn’t cope with it any more. I just had at Christmas, yes it would have been the Easter, at. At Christmas she had got down, because I had saved all their Lego and they had loads and loads of Lego, and she got it all down and it was all over her bedroom floor and it was still there and she would sit up there and build with it for hours.
 
And I mentioned this to the SENCO and I had already mentioned that she was very late with her speech. And she said, “Do you know what, I think [name of interviewee], I think she might have slight Asperger syndrome”. Now as I said, I am a special needs teacher. I qualified and did all that lot, but I had never heard of this condition. She said, “I have only met it once in a little boy, and he had it quite mildly, but..” she said. “I don’t know anything about it”.
 
So I immediately came back, ordered five books from Amazon and by the time she came back from France, I had read them all cover to cover and I said, “Tiffany, come upstairs”, because that was the only way to get her away from her brother, whose… they are either like that or they are like that. They are very, very close. And I said, “I think I know what is wrong with you.” So she came onto my bed, where she used to spend a lot of time. And I said, “Look I have bought all these books”. And she looked at me and I said, “Look I am going to read these bits and pieces which I have marked to her. I said does that sound familiar?” She said, “It is me.” So I said, “Yes, it is you”. And I had marked through the book C or T as according to which child it related to. She said, “Well I am not mad then?” I said, “No.” And her little face. She said, “I am not mad”. She kept saying all that evening, “I am not mad”.

A few parents, particularly fathers, described being philosophical about getting the diagnosis and took the approach that you deal with the hand you are given in life. They focused on their children’s positive qualities and tried to minimise the significance of the diagnosis.

 

Alison and Tony felt differently about the diagnosis; Tony says it was cold comfort, while Alison...

Alison and Tony felt differently about the diagnosis; Tony says it was cold comfort, while Alison...

Age at interview: 36
Sex: Male
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So what did you think when you were in the room with her and she told you?

 

Tony' She just confirmed what I knew I think. I knew anyway. I had known for years before…
 
Alison' He is not as emotional as I am.
 
Tony' No I had known, I just you know blimey you know the kid’s autistic.
 
Alison' In a way …
 
Tony' Get on with your life you know. Just help him.
 
Alison' It was nice to get a diagnosis so we could finally say, thank God for that. We know he has got this.
 
Tony' Yes that was sort of cold comfort wasn’t it. The fact that he was …
 
Alison' And then again I was a bit oh God, you know.
 
Tony' There was the fact that he had actually been diagnosed with having a condition where it is classed as a disability. Yes so, it was just, it just confirmed what I knew really. I just knew that. And we got the diagnosis and it was just confirmation of what I had been suspecting for a while anyway. So Alison was devastated when I told her but I was right you know we have not been told he has got leukaemia or cancer or anything like that you know. It is not like he is going to die tomorrow. So you just have to cut your cloth accordingly with life don’t you. You just get on with it and yes, he is autistic and you take that into account with everything that we do as a family.
 
Alison' It kind of started again from there didn’t it then? We kind of, you know, started anew then. Now is this is it now because before we had been away on holiday or we had been shopping and he would be having his little tantrums because he did use to have terrible tantrums didn’t he?
Tony' Yes. Yes he did.
 
Alison' And you could see people looking at us having you know… and thinking like I said, you know, bad mother, you know, horrible little child with a tantrum. Can’t she do something with him? He needs a goods smack sort of thing.
 
Tony' To which your response is, “Well I am glad you are perfect.”
 
Alison' And you know people would sort of do things and I would have to apologise to people and say to people, “Look I am sorry he has got learning difficulties.” But then all of a sudden I could say he was autistic, which was…not a lot of people understand what that means but at least you have got a diagnosis.

Some parents found the diagnosis devastating and shocking; as one mother said, “It just hit me. I just absolutely… I felt sick. It just absolutely knocked me for six.” Some parents had experienced a grieving process:

“In a way there was relief because at least then we knew what we were dealing with, but at the same time it was almost like a bereavement because you have this picture in your head of your two children growing up and how they’ll be, and it was as if all that vision had been taken away - but we didn’t really know what it was going to be replaced with and it was really like a bereavement and, you know, it hits you very hard.”

 

Jane and Dan talk about feeling upset and frustrated about their son’s diagnosis.

Jane and Dan talk about feeling upset and frustrated about their son’s diagnosis.

Age at interview: 26
Sex: Male
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Jane' Well it is really sort of frustrating because when we got the diagnosis and you start to read everything. When you start to read on the internet and you start to read all the books, it is really upsetting, because you think I don’t want my child to be like this. I don’t want my child to have this stigma attached and you feel very frustrated. And there are times now when I feel very frustrated and very upset because even though we want him to live a regular life, we know that he can’t. When people stop and stare in the street or he is having a tantrum and everybody is looking at you thinking, “Can’t you control that child?” and you just, you get really upset because it is not his fault that he is being like that.
 
And not a lot of people understand what autism is. If you explain to them, they do understand but it takes a lot of explanation and when you are very tired and you are coping with a child like he is, you do get very fraught and your emotions… and so sometimes you just can’t be bothered to [laughter in voice] tell everybody and you just think let them think it is a naughty child or….
 

Daniel describes how he felt when Jonathan was diagnosed.

Daniel describes how he felt when Jonathan was diagnosed.

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And can you remember how you felt at that point?
 
Oh. It is not, when you get the diagnosis it is not such a shock, because you know that there is something wrong in a big way. You know what your son is like. You wouldn’t have been there if you didn’t know what he was like. In fact since his birth we have spent arguing with people there is something different about our son so to be told there is something different on the one hand it is actually a relief you know at last somebody has said, “Yes you have not been making this up just because you are proud. There is something different about your son.” So it was a great relief. And all the people that say, “Oh you are just proud.” You can then say, you know, “Told you so,” that sort of thing. So it is a relief.
 
But on the other hand it also comes as a shock, a complete shock. It is like you have gone from fighting to get people to believe to suddenly having to face up to the reality. And I think it is like a bereavement, it is just like a bereavement. It hurts. You know I think I was crying every day, whenever I was in my car, never in front of people, I was on my own surrounded by metal. I just cracked up every day for must have been near, or nearly a year and I still break down in tears every now and then if I stop to think about the reality of my son’s life and what may or may not lie ahead for him,  as well as the hell that it has caused our lives. You know, that alone is enough, but that is nothing compared to what my son’s life might be like. And I still, when I get a moment alone, which is not very often, because I am with my son all the time, occasionally he goes with his mum somewhere and when she takes him off I just crack up quite often. You know just cry. I know it sounds stupid but the stress and strain you are under is so immense and you are fighting society as well. I mean that doesn’t help.
 

Joy found the period after getting the diagnosis confusing and found it too painful to discuss...

Joy found the period after getting the diagnosis confusing and found it too painful to discuss...

Age at interview: 48
Sex: Female
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So he wasn’t diagnosed by the education psychologist. He was diagnosed by the consultant child psychologist who was dealing with emotional and behavioural difficulties. And once that was done although we had a label… I think that from that point for quite a while, I was in a sort of bereavement process because obviously I had lost perhaps what I thought I had and I wasn’t sure what you were going to get [laughs]. But at the same time when I reflect now that is the same with any child. When the child arrives you don’t know what you have. You know what you would like you know what you think you might have, but you don’t actually know until the character comes out.
 
Do you know I can’t remember [laughs] I can’t remember. I suppose they, must have done. I mean I have had lots of information over the years from different organisations and professionals. I can just remember being in the consulting room and her telling my husband and I and I can remember getting in the car and saying, “When we get back,” because my parents were looking after my son that day, so that we could go to that appointment and saying, “I am not going to tell them.” And I realised later the reason that I couldn’t go in the house and say they have said it is so and so, he is autistic, is because I couldn’t bear people to be sorry for me. It was just too painful.
 
It was … there are some people I still can’t, I choose not discuss it with them, because some people feel too sorry for you and it is just absolutely dreadful. Now I don’t need people to be sorry about it but whether I feel that because we have really had some measure of, I suppose you would call it success, in that our son is coping out in the real world and yes, he struggles, and there will be a lot more struggles in as much as anything because he is now 13 and he is, you know, finding his feet and he is trying to be independent. I would say saying that as a parent of a 13-year-old boy anyway. But no, I think I went out and found the information. But whether that was because I knew how to do that I can’t remember [laughs].
 
Can you remember what went through your mind when she told you the diagnosis?
 
No. Apart from really I think I would have been surprised if she said it wasn’t that. I think by then we knew enough to know there was something wrong, that we were dealing with a complex problem. And it all pointed to it being autism. No I can’t …I think it was probably an awful lot of things. In some ways relief, like I say because we had a label and when you have got a label you can start to ask for things whereas like I say I know that professionals are loath to give labels in case it is the wrong label. But… it does make life easier.
 
And I think I mean I know I was upset because I suppose you don’t want it to be whatever. I didn’t want him to be anything because I didn’t really know anything very much about autism except the classical stereotypes of somebody who just sits in the corner and can’t function and is completely withdrawn into their own world, because you know, I now know that that is at one end of spectrum. And my son is a lot more at the other end. But… I think it was just a mixture. But probably relief in one sense and distress I would say.

The period following diagnosis
Some of the parents we talked to, particularly mothers, described how they blamed themselves for their children’s autism after getting the diagnosis. They reflected on their actions during pregnancy and thought back on whether something they did in pregnancy - diet, drinking or other activities – could have triggered the autism. For most people feelings of guilt receded over time as they came to terms with the diagnosis.

 

Nicki struggled with feelings of guilt and anxiety about Tyler’s future for 18 months after...

Nicki struggled with feelings of guilt and anxiety about Tyler’s future for 18 months after...

Age at interview: 32
Sex: Male
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Mark' And with me it was more like take it on the chin. Deal with it.
 
Nicki' Yes. I struggled. I really struggled. I felt guilt. Should I have insisted on a Caesarean? Should I have let the labour go on for three days? I thought did I wash strawberries when I was pregnant? I ate brie, heavens was that it? Mark considered for a while that it might be the jab. And we were both really looking for something or someone to blame. As a mother, my own private thoughts were awful for a while. I thought, you know, how could I possibly exchange Tyler for a normal child? Is there a way I can do that? Extremes. Real extremes. And then feeling guilty because I had thought it and then being really desperate within myself thinking how can I have ever protect him? How can I make sure he grows into adulthood? Is he going to have an independent life? I don’t want a disabled child. I want a normal child. And all those emotions were an absolute roller coaster for me. And probably if I am honest lasted about eighteen months and when he was diagnosed I burst into tears and … but I knew that that was what the diagnosis was going to be. I knew it. We knew it.
 
Mark' I was kind of relieved when he was diagnosed I was kind of relieved because I knew he was going to get the help that he needed you know. Because it had been identified and I suppose the way things are and everything else I was relieved I suppose. And …
 
Nicki' The other option was a lot worse because they could have said it was unspecified learning difficulties. Where do you go with that? You know with autism, yes it is whole spectrum and yes, every child is different and there can be all sorts of traits of it that they display and you know it is complicated and it is difficult. But we knew what it was. And that is the better alternative we felt, then having something that was, we don’t quite know why Tyler is the way he is. You know we can’t put our fingers on it. So for us that was the trigger then to be able to get all sorts of help so we applied for Disability Living Allowance. We applied for all sorts of different types of help didn’t we?
 
Mark' Yes.

Many parents felt a confusing mixture of relief and upset. It was like a “rollercoaster ride” as the parents felt pleased to know that their children were on the autism spectrum but at the same time had to accept the long term implications. It was apparent from listening to some parents that autism has become better understood over the past twenty years and parents of older children could look back and reflect on this.

 

Tracy experienced ‘waves of euphoria and fear’ when her daughter was diagnosed and still feels...

Tracy experienced ‘waves of euphoria and fear’ when her daughter was diagnosed and still feels...

Age at interview: 40
Sex: Female
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Can you remember how you felt when you had it sort of confirmed?
 
It was a fifty fifty thing really sort of ‘oh at last, but oh my god’. It is sort of … it kept going over in my head, at last, oh my god, at last, oh my god and you sort of have waves of euphoria come up because at long last you know, that you are not a neurotic mother, you know there is something and that everything you have been saying there is some truth in it but then when you sort of get those feelings out then comes, ‘oh my God what now?’ feelings. I was scared. I was scared. You feel a failure because you think you have done it.  And if you had done this, or if you done that, or … you know if I hadn’t worked right up until two weeks before I had her, or if I had ate more fruit, if I had done this, you go through this horrible, horrible process of guilt and even now twenty years on the guilt is still there because you still feel, just like a film you are watching this whole thing in front of you, a whole lifespan of somebody with this condition and you think they come from you so you should have done something to prevent that happening.
 
I am starting to accept there is nothing, the more I see now, the more medical advances and the scientists and more or less I am starting to realistically to believe ‘oh it is not my fault’ but you still have that bit inside you thinking ‘oh I could have done this’ or ‘I could have done that’. And then the process for me and I don’t know if it is the same for everybody is I went into overprotective mode. You know, and I sort of was hell bent on I was going to get what I want and I want it now sort of process that no doctor, or no headmaster or authority officer was going to tell me ‘no’, because I was full of anger and it was just like a process of so many emotions, anger, possessiveness. Thank God for that and it just goes over in circles, you get rid of one emotion and the next one comes and the next one and you seem to go back to the beginning and that first thought comes again, but after a few years it does subside. It is still there. I still feel guilty. I still feel angry. But whether I have learnt to control it or not show it or deal with it better, I don’t know. But a certain amount of anger because you do say, why me, why Nicola?
 
But the more you find out the more that you realise that it is one in five children so it isn’t only you, it is only Nicola. And you can’t say ‘why me, why Nicola?’, because there is so many more out there. And thankfully in our case Nicola is borderline; on the disorder spectrum she is mild to moderate. Whereas some of the children that Nicola has mixed with or I have come into contact through the years would be on the maximum top end of the scale and I don’t know. I just don’t know how I would have felt if it was that.
 
So lots of the time I lay there, I lay in bed and I am thinking ‘oh why me, why me, why Nicola’ and then I think ‘well it could always be worse’. So the emotions are still in turmoil. It is still up and down, up and down, good days, bad days and then now Nicola has got older and this is terrible, I shouldn’t say it, and I shouldn’t even feel it and I know that I shouldn’t feel it, but I think to myself, ‘oh my God this is the rest of my life?’ and how bad is that? A terrible thing to say because I shouldn’t feel it, but I do and I can’t help it. Some days I feel very angry because this is the rest of my life and there is never going to be a time when Nicola doesn’t need me.

Some parents felt frustrated and upset that they had had to wait so long to get the diagnosis and that some professionals had missed obvious signs that the children were on the autism spectrum. One parent was expecting the diagnosis of Asperger syndrome but found the additional label of ‘developmental delay’ difficult to accept because her son was very bright.

 

Mary-Ann felt devastated when her son was diagnosed but came to recognise that what mattered most...

Mary-Ann felt devastated when her son was diagnosed but came to recognise that what mattered most...

Age at interview: 32
Sex: Female
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How did you feel when she said that to you?
 
Well at the time it was. It is quite hard to explain when she first said it, I was like okay, you know, because people say things and you go okay and then – and my brother was with me and my brother doesn’t really have much of an understanding of Arthur’s conditions. He hasn’t read any of the books. He thinks he knows a lot about Arthur. He hasn’t read any of the books and that and so I was glad that he was there and heard that because I kind of had felt Arthur’s behaviour was my fault. And I kind of felt and sometimes it did sort of did feel like my family said, its just because I don’t discipline him enough or you know, I haven’t brought him up right and you know, and so I was glad that he heard that bit.
 
It was afterwards when I was back at home on my own and thinking about it. First it was devastating because it was kind of like, I can’t make him better and it was really, really hard to accept that and it took quite a while, you know, because you do, it is I suppose kind of, kind of like a bereavement, you know I think you go through that, that denial, that okay, so what can I do to make it right? Okay if I do this, and do that and do that it will all be okay. But yes, I think it was that and then coming to that realisation myself that was important, or what is important is for Arthur to be happy, you know and he wasn’t happy in the mainstream school and he had lots of support. He had full time support. He had two different learning support assistants who were really good with him and I, yes, I could see that he wasn’t… he wasn’t in the right place and that there was nothing they could do about it, you know.
 

Christine didn’t want to believe her son had autism because he had been misdiagnosed many years...

Christine didn’t want to believe her son had autism because he had been misdiagnosed many years...

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And we went to see [psychologist] in June. So Brian had come home in December and by June I went to see this psychologist because he seemed to fit what they were saying about autism. But in many ways I didn’t want to admit that it could be, at that stage, because all the years of it not being but when I went to see [psychologist]. I suppose I may be a bit Asperger's because he came here and I went there, you know, I didn’t realise he did …. And I was waiting at his house and eventually we did meet up because he came later and I was still waiting at his house. I am very … you know I thought maybe he has broke down. And he spent a long time listening and observing Brian and after a couple of hours he said, and he had got various reports, he had got medical things, some that I had sent him I think and from then he said, “Well there is no doubt in my mind that Brian certainly is autistic with the Asperger's.” I said, “He can’t be. He can’t be.” And he said, “Yes.”
 
And from then I could ask [psychologist] questions like why does he do this, so why does he do that? And every Christmas he wants a watch, a bloody watch for Christmas I said every year it is the same. And you have got boxes of them, you know you don’t want them... That is Christmas. And I said, “You know, when I buy him things does he not want them?” And he said, “Well has he asked for them?” “No. But he would like them.” He said, “How do you know he would?” I said, “Well I thought he would.” And he said, “Well no, he doesn’t, does he?” He said, “He won’t say to you.”
 
And it was from then after that, after [psychologist], I saw him a couple of times. I found it extremely upsetting, I have got to admit I did because I saw the mistakes that had been made. The mistakes that even I, you know, that I had found this, I had done that. Why hadn’t a mother recognized what was wrong with her son? And then from the minute I found out about autism it became easier in other ways. I stopped saying to Brian, “Brian will you stop doing that with your hands,” because he can’t stop. Sometimes I will say to him, “Brian give it a rest will you. You are doing my head in.” And then he will say, “Oh sorry, mum.” But that was something that I wasn’t aware of. I did not know that Brian doesn’t understand everything I say to him and apparently he has got these safety words, ‘yes mum’, ‘no mum’ which doesn’t mean he has understood me but he looks like he has. So when ever anyone ever would say anything to him, he would say ‘yes’, and he would yes to anything, you know, he just. Because there are some words, if you say his name and say it sharply he will listen otherwise you know he switches off.

Having more than one child on the spectrum
For some parents with more than one child on the autism spectrum, the diagnosis of the second child was particularly upsetting when they had thought the second child was not on the spectrum. As one mother said, “The first thing that hits you is, is there something wrong with me?”

 

Sandy’s two sons have very different personalities and she found getting the second diagnosis...

Sandy’s two sons have very different personalities and she found getting the second diagnosis...

Age at interview: 38
Sex: Female
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And then Adam came along six months later and at Adam’s eight week check-up our health visitor sort of concentrated more on Joseph and lack of speech and by then he was two years old and not really sort of making any kind of noises at all. And she referred us to a paediatrician eventually who did diagnose autism, just before, …I think it was, no, it must have been about eighteen months he started the speech therapy and then saw a paediatrician at about just a month before his second birthday, he diagnosed autism. It was a big blow but at the same time we started looking into it and it did explain a number of the things that Joseph was doing, such as the constant video watching of Thomas the Tank Engine which I think really every sort of autistic parent experiences. Lining cars up, lining everything up, sorting out into colours and things like that. Never really took any notice of his baby brother at all, because Adam arrived at about the same time as Joseph was diagnosed.
 
Adam was totally, totally different, very different to Joseph. He was very into company, very smiley, a typical baby really. He didn’t sleep through the night, he wanted constant feeding and changing and generally being quite a pickle, totally the opposite to Joseph. And then one day when Adam was eighteen months old he picked up a pen and started doing this. And Joseph hadn’t done that for a good year and I did say to my husband, “I am absolutely convinced that Adam is autistic as well,” which was a big shock because that was the first autistic thing that he had done independently. He had jumped up and down and flapped when he got excited. But that was actually the first sort of really, I suppose, autistic trait that we got from Adam independently. I contacted our paediatrician who was absolutely fantastic and said, “Bring him in”. And unfortunately Adam was diagnosed as well not long after the eighteen month sort of thing. We were seen very quickly and that was a very big blow for us personally as a family because I think really we just thought we had a normal little boy and then all of a sudden he is autistic as well.
 
And the first thing that hits you is, is there something wrong with me? Can I have a normal child? The boys are still very, very different. It took me a good eighteen months I think. I almost went through a grieving because the little boy that I should have had felt as though he had been taken away and that was very hard to deal with actually. I did go through quite a down stage and I suppose even then we were just looking into autism. How it would affect the boys, trying to understand what was going through their heads. And sometimes you think you understand something and then they do something that you are totally not expecting which is, which is normal now I suppose [laughs].


 

Last reviewed July 2017.

Last updated November 2012.

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