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Helen and Jason - Interview 12

Brief Outline: Helen and Jason's older son,Joshua, was diagnosed with Asperger syndrome when he was five years old. He attends the local mainstream primary school but his parents are worried about his education and would like to find specialist provision for him.
Background: Helen, a full time carer, and Jason, a garage mechanic, have two sons aged 6 and 2. Ethnic background/nationality: White British.

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Helen and Jason have two young sons, Joshua aged 6 and Sam aged 2.  Joshua was born after Helen had had fertility treatment and he had a difficult birth.  Joshua was very quiet as a baby and his development was unusual.  For example, he didn’t learn to speak using individual words but began to speak whole sentences.  He also learnt to use the toilet very quickly. 

Joshua wasn’t interested in playing with other children and was very hyperactive with poor concentration.  He has never liked being touched and would play very orderly games on his own.  At school, Joshua was restricted to half days for a while as there was no funding for the additional support he needed. 

Initially his parents did not realise that there was a problem but it was suggested to Helen that Joshua may have Asperger syndrome. Helen did a lot of research in the library which seemed to confirm  this.  Eventually Joshua was diagnosed aged five and received his statement soon afterwards.  He now has the appropriate support in his mainstream school but his parents are worried about possible bullying when he goes into the primary school.

Helen and Jason have found it hard over the years and Helen has recurring depression. Whilst receiving the diagnosis and the statement has made some aspects of Joshua’s life easier, support or activities for very young children with Asperger syndrome are very sparse.  He attends a Saturday Club every six weeks which he enjoys. His parents find it difficult that he does not want to join in with the family.

Joshua has various fears, including loud noises.  He loves cars, the seaside and is a great mimic.  He loves documentaries on television and is particularly interested in nature programmes.  He wants to be a paramedic when he grows up; his parents think he would be better as a marine biologist because of his lack of bedside manner.

 

Josh

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Helen' [pause] er huh. I don’t know. I kind of just, he is Josh.
Jason' Hm.
Helen' He is who he is, you know. You take him as you find him. If you don’t like it get out of his life.
Jason' But he’s….
Helen' But he’s highly intelligent so don’t treat him like a fool. He will hold a conversation with you if he likes you and so long as it is something he wants to talk about
Jason' It is very tricky to…
Helen' Yes that one is isn’t it. He’s… he is funny, he can be really funny.
Jason' Hm.
Helen' And he has quite an ironic sense of humour. Truly hasn’t he? He has got quite a good sense of humour.
Jason' Yes.
Helen' But in the next breath he can’t cope with what I would call across the road humour. You know most of them sit and have a snigger at… but that is completely over his head. He has quite an evil sense of humour. Probably the opposite end of the humour to my, not particularly evil, but he’s… no I don’t know.
Jason' Hm.
Helen' I don’t know. We have struggled haven’t we to try and discuss this with the family.
Jason' He is energetic. Verbose. Quite quiet really in his own…
Helen' When?
Jason' Well he is. He is noisy but he is very, he is not… it is not the same sort of noise as…
Helen' As a normal child.
Jason' Any normal child his age.
Helen' His is incessant chatter.
Jason' And it could be about anything. Anything! He will reel off out of the middle of nowhere. He will just reel off an advert that he has seen on the telly, but it could be weeks ago and you sort of thing, well where did that come from?
Helen' We get this one at the moment. Adverts are his forte at the moment. If something goes wrong in the kitchen, “Oh well, you need blah blah blah blah blah.” My tin opener was playing up the other day and there one that you put on top and it goes round on its own or something. I have seen the advert once or twice and he just reels it verbatim. And he is just like where did that come from…? I don’t know… Josh… that would be a tricky one. I don’t know. You kind of accept him as he is, you know, he is our son but …
Jason' He goes off in all directions.
Helen' Hm. Yes, he is…. No, I couldn’t describe him. He is too complex to describe. In any case I throw him in room with people and let him get on with it [laughs].
 

Helen and Jason's son's speech was delayed but he talked in sentences straight away.

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Helen and Jason's son's speech was delayed but he talked in sentences straight away.

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Helen' He didn’t speak did he?
Jason' No, no, he couldn’t speak.
Helen' And when he did speak it was sentences. Not like a normal child, where you get the words, the bus, the car, the whatever. Josh would sit there and he did full sentences. And we didn’t do potty training. One minute he was in nappies and the next minute he was using the toilet of his own vocation. He had worked out how to stand up and use the toilet. He didn’t…. and he was really strange he did not conform to any of the books.
Jason' There was no in-betweens.
Helen' No.
Jason' He ….
Helen' No. It was… wasn’t it? I took him to parents and toddler group. We did live in [town] you see, in private rented. I took him to toddler groups and he wasn’t interested in the other children, didn’t want to play, had nothing to do with them, he was extremely hyperactive. So we cut out all the E numbers, didn’t we, because we assumed, because both two of my brothers suffer from an E number allergy thing so we knocked all the E numbers out and although that calmed him down, he was still unsociable. No contact, no… and he hated me. I still can’t touch him. He doesn’t like me… but we never really hit if off anyway.
Jason' No.
Helen' He is not a cuddly child so. He adores you though.
Jason' He just doesn’t show it, does he? He doesn’t know how to show his sort of emotions. But yes, just watching him with the other children you realised that something wasn’t right. Everything, Josh when he was playing, his cars always have got to be in a straight line. There is no sort of random, everything has got to be the same.
Helen' He stands the same size cars next to each other.
Jason' So we started thinking well is there more to the way he is behaving than it is just Josh sort of thing? We thought for …
 

A reception teacher helped Helen and Jim to get the diagnosis but they should not have needed to...

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A reception teacher helped Helen and Jim to get the diagnosis but they should not have needed to...

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Helen' But still no diagnosis and by this time I had got to use the computer and I was being treated for depression because it was such hard work and my counsellor actually said to me, “Talk to me about your son.” So I sort of explained Josh as I see him, or saw him at the time to her. And she said, “To me he sounds like he has Asperger's. I will write it down, go and have a look in the library.” And I kind of went from there basically and in the end I made up the case file.
Jason' Yes. The school helped. The nurse… his reception teacher did a lot to help get the…
Helen' Yes to get the diagnosis…
Jason' To get the diagnosis through. Yes, she was fantastic, but only because she has got an autistic brother and he is severely autistic, and she’s his guardian because her mother can’t cope. She could see how we were struggling and she could see Josh had got everything, the criteria fitted and she could see that we were losing and she put her job on the line for us and pushed and pushed and in the end she went with us and backed us. We went to the child psychologist with her and the child psychologist backed down and said, “Okay fine, you have got your diagnosis, he has got Asperger's.” But we should never have had to have done that. It was just nobody believed us. Nobody, you know, as a parent, you know, whether your child is OK or not. When this one came along he was totally different from the outset. You know, he would always make eye contact, he wanted to be held. This one, he’s attached by apron strings. When Josh was a baby, he was his own baby happy to lay in his cot for hours, never, no human contact, no, he never wanted it. But because we were new parents we didn’t know, we never knew there was anything wrong.
Jason' We just presumed that he was a quiet baby.
 

Helen and Jason’s son has learnt to say no to fizzy drinks and sweets.

Helen and Jason’s son has learnt to say no to fizzy drinks and sweets.

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Helen' We still run an E number free diet. We all live it don’t we, really and truly?
Jason' Yes.
Helen' It is a whole lot easier to run the whole family on it. There is no Coke in the house and we have only just introduced orange squash back into the house. And it goes over the bottom of the glass and he feels there is some in the glass but believe me there probably isn’t [laughs]. Flavoured crisps are out, of course Smarties, Skittles, anything like that. They don’t even exist and he has been taught that he doesn’t accept sweets from children. I know usually you don’t accept sweets from strangers, but you don’t accept sweets from even your friends and now he will stand in a shop and say, “I can’t have those can I mummy? There is E numbers in them” and he knows what he can and can’t eat which works for us but is another form of independence and has gone against us when it comes to help.
 
Yes, no, the diet thing. We have run the diet thing. That was our main change and it did make a big difference, taking the E numbers out. He eats a lot of fresh fruit and vegetables, most meat, hates cheese, won’t drink milk, but that is nothing out the ordinary, kids all go through that I think. So we get there one way or the other, don’t we? He has got a good diet actually. Having spoken to a lot of other parents where the kids eat cold baked beans and a banana or whatever and they seem amazed by what we get past him, but if you don’t eat it at our table you don’t get anything else and I don’t back down. So that seems to have worked but he is coming against somebody that is as pig-headed as he is. It is perfectly healthy food, you will eat it or you go hungry and it just gets put back in front of you, again, again and again, which I know sounds horrible but it seems to have worked and now he does eat apart from brussel sprouts which is nothing.
 

Helen and Jason’s son is fascinated by nature and likes bird watching in the local nature reserve.

Helen and Jason’s son is fascinated by nature and likes bird watching in the local nature reserve.

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Helen' He likes gardening. We had an allotment before we moved here but he has become more uncontrollable almost I suppose, more of a challenge. I wouldn’t say he is asserting himself, but he is more of a challenge.
 
In what ways?
 
Helen' I don’t think it is the right word but trying to get him to conform to family life whereas he wants to be on his own but he doesn’t. He wants to bring all his cars down here on the mat and play in front of you because he doesn’t want to be on his own, but he wants to do his own thing, but with you within striking distance. So that is a difficult one now isn’t it? We don’t have time for things like that but we try, we planted hundreds of bulbs in the garden in November and he had them all lined up in rows. In daylight you would see, they are all coming out and they are all in nice little neat rows. Not what I wanted because I kind of went sprinkle, sprinkle, sprinkle and it is like no.
Jason' They have got to be straight.
Helen' [Laughs] So they are all in straight rows all down the flower beds, which I hate, but… [laughs]. So he likes gardening. He likes anything outdoor. We go down we have got a nature reserve at the bottom here. A lot of wild birds and stuff and the RSPB were down there the other day with their cameras and telescopes and binoculars and the spent ages showing him different birds because they had a hide set up and he was in there for ages wasn’t he just looking through….?
Jason' Yes, looking through binoculars.
Helen' Yes. That all fascinates him. It is, I don’t know. That is Josh isn’t it really and it is just nature as a whole. God knows what he is going to be when he grows up. Something rich we hope [laughs].
 

Helen explains why her son cannot go to soft play areas.

Helen explains why her son cannot go to soft play areas.

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Jason' But a lot of the other not clubs but activities around …
Helen' They are geared at nine year olds so there is nothing else for him again and trying to get him in with neurotypical children as they like to call is, the people don’t want to take the hassle and they don’t have the insurance and we find that very difficult don’t we? You know, because he gets so over stimulated he gets very, not touchy feely, but pushy shovy, and they are frightened he is going to hurt somebody, so he is not allowed to do stuff. So we don’t go to either of the play places, like Wacky Warehouse and stuff like that. We can’t take him places like that because the loud music and stimulation and everything is too much and it is an accident waiting to happen and very rarely do we get the chance to take them somewhere like that, when it has been, they won’t turn the music off even if there is nobody else there. They seem to think they have got to have it on and if they turned it off that is what causes the problem with them and then we could play quite nicely couldn’t we?
 

Helen and Jason discuss the different responses of their two families towards their son.

Helen and Jason discuss the different responses of their two families towards their son.

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Helen' No. It was too much, way too much but the rest of the family well. My mum has taken it okay.
Jason' Your mum has taken it and…
Helen' I have got a handicapped brother who is now 33 so my mum kind of went yes, okay, fine, whatever [laughs]. No problem.
Jason' But my mum still thinks that he is going to grow out of it. So …
Helen' No. We are, yes. We have given up with that one.
Jason' It has divided the families a bit.
Helen' We have divided the family there, yes, because one of your sisters has taken it on board and they have been fantastic and her husband… they have got a ream of their own kids [laughs]. But when we go down there which isn’t that often they are called the special boys and they are spoilt rotten and they are allowed to get away with absolute blue murder and they always take them … [name] he takes them out on the tractor. He brings the tractor home to take … because he knows he likes going out on the tractor. If he knows we are going down he brings the tractor home so that he can take him out on the tractor. They have been brilliant. They have accepted it. We have explained to them how he is, and as far as they are concerned, he is who he is. He is Josh. But your parents have just gone oh well he will grow out of it, you will cope, and left us to it basically. No contact. They have just gone completely the other way.
Jason' Yes. They have just gone.
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