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Helen - Interview 41

Age at interview: 46
Brief Outline: Helen's older son, Joseph, was diagnosed with autism when he was 7 years old. Joseph now attends an independent church school after a negative experience in a mainstream primary school and is making good progress with appropriate support.
Background: Helen, a civil servant, and her husband have two sons aged 9 and 10.

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Helen, a civil servant, and her husband, a welder, have two sons aged 9 and 10.  Helen felt there was something different about their older son, Joseph, at about twelve months old because he didn’t babble or make eye contact.  However, her concerns were not taken seriously until Joseph started at mainstream school and eventually, with a lot of perseverance, Joseph was referred to a clinical psychologist and diagnosed with autism when he was seven years old. 

That Joseph’s autism was not identified by various professionals over the years was frustrating, particularly in view of signs such as lack of eye contact, temper tantrums, delay in speech and language and asking repetitive questions.  Instead, she was made to feel that she was a paranoid mother looking for an excuse for her son’s behaviour.

Helen was ‘shell shocked’ by the diagnosis but also relieved to get some answers.  She thinks the way the diagnosis was delivered – gently but without holding back – was the best approach. The clinical psychologist arranged to see them two weeks later when they had had time to absorb things a bit, which helped.

Joseph is now in a small independent church school after a disastrous experience in mainstream junior school.  He has settled in well and is making some progress with appropriate support by the school.  Things like sending notes home from school informing Helen and Neil of lesson changes allow them to prepare Joseph in advance and the school are also tailoring Joseph’s work to suit how he learns.

Helen described Joseph as a lovely, smiley boy who is very loving.  He enjoys football, swimming and riding his bike, watching DVDs and going to the cinema with his mother.  Joseph can have tantrums which are very difficult to manage and he worries about things like thunderstorms.  Joseph knows he has autism and this can play on his mind sometimes.  The experience has been turned the family's lives upside down;  they all cope with it in different ways.

 

Joseph has a flare up when he has done something physical, like walking to the shops. He does not...

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How do you describe him?
 
He is a lovely smiley little boy. When he is a nice little boy he is wonderful and you wouldn’t change him for the world, even some of the autistic traits. But then there is the other – it is very much a Jekyll and Hyde situation. He can be happy one minute and then all of a sudden it is like switching the light on and he can be a monster. And you never stop loving him even when he is having those tantrums and on a good day you will cope but there are times when it is extremely difficult and you do your best. But no, in his own way he is a happy little boy, but he wishes that he wasn’t autistic. And he would tell you that.
 

The clinical psychologist gave the diagnosis gently but “did not hold back” which Helen thought...

The clinical psychologist gave the diagnosis gently but “did not hold back” which Helen thought...

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And how did the person give you the diagnosis?
 
She was excellent. I mean if I could describe her, she is professional from the top of her head to the tips of her toes and we had obviously got to know her and we formed a relationship with her from the outset. She is just that sort of person. She has got such good interpersonal skills and she puts you at ease and I kept very detailed behaviour sheets for her and she saw Joseph a few times and she didn’t – I think it was the way she approached it - she knew she had got to break it to us gently but she didn’t hold back and I think that was the best way to do it. And she offered a couple of leaflets to start with. She said I don’t want to bombard you because you need to go away and take this in.
 
So I can only speak from personal experience that we were very fortunate in having [psychologist] sit down with us and say this is what I think and this is my diagnosis and she gave reasons why, which I can’t remember because we were taking it in then and all I could think at that time, was well he is autistic and I couldn’t think about anything else. So we did come away from… although she did it very well. We came away feeling devastated and lots of tears. And lots of why us? So it didn’t probably sink in. I don’t think it really sunk in until about two weeks later.
 
And did you go back to see her?
 
Yes. Yes. Yes. We went to see her, I think we went to see her about two or three weeks later. She gave us time to sort of go away, think about it, with the option of telephoning her if we needed to talk and we have always had that from her. So … but we didn’t. We waited until the next appointment and then we were able to sort of talk, you know where do we go from here, what do we do in terms of school and she did write to school and say, “This is my diagnosis.” And she did actually ring them as well, which I thought was excellent and then she attended a couple of meetings with school as well to say these are the implications, these are the things that you need to be thinking about.
 

Helen has grown a thick skin over the years and will tell people what she thinks.

Helen has grown a thick skin over the years and will tell people what she thinks.

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I think, initially, when we got the diagnosis and we weren’t equipped to deal with the tantrums and the comments that people make, because they look at your child, and think it is the child from hell, you know it is your parenting skills, it is all your fault and people can be very cruel and they sort of tut or make noises or pass comments and sometimes we could ignore it and at other times we couldn’t and we tried to say to people he is autistic and that didn’t work. So then I saw on the National Autistic Society website that you could get these little cards that you could give out to people if you found yourself in that situation. So we got some and then that is what I started do. And some people you got a positive reaction and oh you know I am really sorry and others, you know, they would just throw them on the floor. It taught you a lot about human nature.
 
But over the last few years the ones that will now sort of throw it on the floor, you grow very thick skin and there are sometimes when you turn round and tell them what you really think and other times when you are able just to walk away because you know that it is basically ignorance and you are not going to get anywhere with them. So that has become easier. But I have never been afraid to stick up for Joseph and I will always do that if I think that people are being particularly unkind or if they need to be told a few home truths [laughs].
 

Helen describes her son’s meltdowns as “like a monster exploding”.

Helen describes her son’s meltdowns as “like a monster exploding”.

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You say he goes into meltdown. Can you describe what you mean by that?
 
Sometimes it can be instant. He can be sat here now on the settee talking to you and I and then a thought will come into his head and it may be something that happened last week. It may be something that happened six months ago. And it will make him angry and then he will get angry and he might start thrashing, kicking his arms about, throwing things that is worst case scenario.
 
Sometimes you can see the gradual build up, you can see if he has had a particularly bad day because he will sulk and he will be moody and you know that sort of come seven eight o’clock at night you can really be in for it. So then it is trying to distract him and sometimes that works and sometimes it doesn’t. And then he can go up to his bedroom and refuse to go to bed, start throwing things, jumping on his bed, sort of banging on the ceiling. Its – it is like a monster exploding. And it is very unpleasant and twelve months ago he did get very physically violent where sometimes we did have to physically to restrain him and use time out and we did at our previous house sometimes have to lock him in his room and that was on recommendations from one of the specialists at the [hospital]. We didn’t like doing it but there were times when we had to do it for everybody’s safety, but fingers crossed we haven’t had to do that for a while now.
 

Helen's son has to get out of the way quickly if his brother goes into 'meltdown' and often feels...

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Helen's son has to get out of the way quickly if his brother goes into 'meltdown' and often feels...

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We have had to teach him that if Joseph does go into meltdown he needs to get out of the way very quickly if he can, so you have always got to have your eyes and ears open and be sort of tuned into that and that is very difficult you know for a nine year old to understand and he had has to really understand that from the age of six so it has been very, very difficult and of course he often feels left out and feels that Joseph gets more attention, which he does and we have had to be quite honest about that. So there is a resentment that sometimes he has actually said to us, “I wish I was autistic.” Which is really, really sad, because you wouldn’t, you know, you wouldn’t want to wish that on anyone. But I can understand why he would say that.
 

Helen has found social stories work well with her son.

Helen has found social stories work well with her son.

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Could you tell me a bit about the social stories?
 
Well basically what you do is, I mean there are various books and social stories which we looked at and you tend to use sort of matchstick type characters but you sort of draw a picture and then you have a simple phrase to describe what you are doing. It might be ‘I brush my teeth, you know, after I have had my breakfast’. It can be something like that. So that he can go through each sequence and know what he has got to do and how it fits in within his routine.
 
And one of the first ones that we had was for bedtime because he wouldn’t let me go downstairs unless he had asked me a particular series of questions and I was having to answer the questions forty times before I could go down stairs and the question was, “Will it thunder?” because he is terrified of thunder and he wouldn’t let me go downstairs until I had answered this question forty times. Or as you can imagine it took up an awful lot of time. It was taking two or three hours to get him to settle at night time. So we used a chart and we drew thunder and lightning and clouds and we sort of drew Joseph going off to sleep in his bed and we actually had, ‘Will it thunder?’ written down ten times. And we said to him we will allow you to ask this question ten times and if you do that you will then get a star each morning and then when you have got 20 or 25 stars then you can choose a present and we will go and buy it. And we did that and over a period of time that has worked. Now I have to answer eight questions before he goes to bed, one of which is will it thunder? But I only have to answer it once.
 

Helen has found remaining focused, trying to remain positive and making sure she gets what they...

Helen has found remaining focused, trying to remain positive and making sure she gets what they...

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What sort of things have helped you deal with the experience?
 
I think remaining focused and trying to remain positive and going through bad patches at different times. When I have felt really low, fortunately [husband] has been fine. Had we both felt really low at the same time that could have been very, very different. But I think the thing that kept me going was I knew that if I didn’t, really sort of pull myself together and get on with it and support him that it was going to be far worse.
 
So I really think just a pragmatic approach. And it is very easy for me to sit and say that because that is the sort of person that I am but just being very, very determined and very determined in terms of knocking on the door at the school and you have to be prepared to be unpopular and I think if you can take that on board and keep asking and really sort of knowing what you are entitled to, knowing what your rights are and knowing what help is out there to support you and your child. And also the fact that they can’t help the way they are and that they need you. So I think they are the things that have kept me going and seeing the benefits. You don’t see it straight away but I think if you are prepared to keep going and you are prepared to … you have to learn about it I think to be able to cope with it. And I think if you can do that then that is half the battle.
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