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Jane - Interview 27

Age at interview: 47
Brief Outline: Jane's son, John, was diagnosed with Asperger syndrome when he was 9 years old. He is at a mainstream secondary school and hopes to study augmentation, artificial limbs and electronics at university.
Background: Jane, a Senior Lecturer (Neonatal and Child) Nursing, lives with her son aged 14 and daughter aged 9. Ethnic background/nationality: White British.

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Jane lives with her son, John, aged 14 and daughter, aged 9.  Jane always thought that her son was different from birth.  He didn’t smile very readily from a few months old and was very sensitive to noises.   John was very advanced intellectually and, while Jane suspected that he might be on the autistic spectrum, there was no reason to follow it up while he was doing well at school.  

It was when he reached the age of about seven that the teachers began to find his behaviour problematic and, at the same time, John found it difficult to interact with other children.  He was very detached from the other children unless he felt that they had offended him in some way.  Jane asked the GP for a referral and the paediatrician diagnosed Asperger syndrome .

Jane felt that the private school he was at was not meeting his needs appropriately and she moved him to a state school which had more of a culture of acceptance of difference.  Since then, John has got on very well at school.

Jane receives 10 hours a week respite care which has been invaluable. John has had a series of tests done privately which have identified specific differences and provided a plan of action for areas to work on.  He is also on a gluten and dairy free diet which has increased his sense of wellbeing. 

John is hypersensitive to sounds, taste and touch.  He finds emotions difficult to comprehend and likes things to be presented logically and rationally.  He has no road safety or stranger danger awareness so is socially vulnerable.  He follows specific routines in the morning which are lengthy and take time.  He has various obsessions including Pokemon, internet literature and the Games Workshop.  He wants to go to Cambridge University to study augmentation and artificial limbs and electronics. John worries about his ability to live independently at university, but she is helping him learn the necessary skills.

Jane, a Senior Lecturer, finds that the real challenge for her is keeping from being exhausted by balancing work and some of the specific challenges of caring.  She hasn't come to terms with the lack of specific services and support for children and their carers, and the reliance on the parent to research, ask for and keep asking for support to prevent rather than simply react to crises.

 

Jane describes how her son was very good at maths from an early age.

Jane describes how her son was very good at maths from an early age.

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And one day, I thought he is really working things out and I had two bowls of, two little dishes, and in one I put orange slices and in the other I put Maltesers. And I sat with him and I gave him the orange slices and I kept the Maltesers for me and he looks at the Maltesers and he looks at me and he looks at his orange slices and his little head is doing this. And he said, “Let’s share.” I was so impressed so we shared and then he was counting the pieces and he was only two and he was going, “One for me, one for you.” And he was actually counting. And he could count and he was counting in twos before he was three and he was reading by himself and at school he was, while other children were doing numbers, when he was four, while the children were doing number bonds to ten, they had a caterpillar. The caterpillar ate, the caterpillar had eaten nine leaves and he ate one more and that made ten. Well Joseph’s caterpillar ate 999 leaves and ate five more and came out with a 104. A 1004 and at the age of four it is quite amusing. So yes we knew we had got a very different child but so far he was conforming.
 

Jane’s son was diagnosed within minutes by the paediatrician.

Jane’s son was diagnosed within minutes by the paediatrician.

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The diagnostic period came when I went to the GP and I described the behaviours and I said, “I think really we need a consultation.”  Without diagnosing, because I had no idea to be quite honest. I knew he wasn’t autistic in the classical sense, but I never imagined Asperger's because he wasn’t behaving in the way that, at that age, with a stereotypical Asperger's. So we were referred onto the paediatrician and the paediatrician made a diagnosis within minutes I would say and she also labelled him with ‘developmental delay’ which I found very hard to come to terms with because at the time I had an extraordinarily bright young boy, who was having trouble socially and I couldn’t see where – what she meant by developmental delay and I think now she should have said, been more explicit because for me development delay is something cognitive. He was only seven or eight years old, coming up for nine. I can’t remember the exact time, but with adults socially he was very adept but actually he wasn’t. The adults were very adept at working around him and compensating for him and it was only when the adult’s world was absent and the child was supposed to integrate themselves, did the problems become apparent.
 
So I would think, looking back, he was very, very intelligent, very articulate, very advanced but when it ever came to his own feelings, he was very, very immature and he couldn’t see on behalf of others and even now, he finds that very, very, very hard. So that is how the diagnosis came about.
 

Jane finds her son’s ability to argue so effectively challenging.

Jane finds her son’s ability to argue so effectively challenging.

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So the difficulties are also related to the fact that if he objects to somebody saying something, at school he has learned to wait his turn. He puts his hand up and he waits his turn. When he was about 4, or 5 and [sister] starting speaking when he was about, well [sister] is four years younger than him. I would say to Joseph, “When you want to speak Joseph,” because he would always talk on top of people, even now, “When you want to speak Joseph, put your hand up.” And I realised I had gone really far with this, because one day in the back of the car, [sister] sat with her hand up because she wants to speak [laughs]. And they sit there, and in the house sometimes, they put their hand up when they want to speak and it is so funny, the training that you do.
 
So the challenges are, if I say, “Shh, not now,” he has to finish his sentence for as long as it lasts. He can’t just stop. There is no point in me getting into an argument with him on a logical basis because he will win every time. His intelligence far exceeds mine. His knowledge base far exceeds mine. And it is sometimes I just say, “Oh just shut up, please, just shut up. I am tired, just shut up.” And I close my eyes and I close down and then of course I get the rational argument, “Well that is no way to finish an argument, mummy.” You know, because then he re-quotes me and he says, “You have to talk about it.” I say, “Oh Joseph, not now.” [laughs] And he doesn’t get the body language and then he has to re-explain himself and he has to re-assert himself and I… I just walk away and he follows me [laughs]. So I go in the room and I close the door and he know that when the door is closed he has to knock on it and he can’t come in the room until I open the door and let him in so he is very, very good with the rules but he will sit outside the door and carry on telling me. He just doesn’t stop.
 

Jane’s son finds it hard if what people say is inconsistent with what they do.

Jane’s son finds it hard if what people say is inconsistent with what they do.

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So yesterday, he is fourteen now, he is taller than me, he is quite medium build. He is very, very intelligent. He has just got two A stars for his science GCSEs. He is still doing very well with his clarinet and piano. Yet the teacher asked him in the classroom something and he didn’t understand and he will have given what he thought was a witty reply and he said, “The teacher then said to me something about a basic level of politeness and I couldn’t understand what she said and I kept asking what she meant, but it didn’t make sense.” To him it wouldn’t have made logical sense and he remembers exactly what people say precisely. And if there is inconsistency between what they say and what they do, then he is confused. And he said, “I was so upset that I just burst into tears.” And when he cries it is a very physical thing for him. He can’t modulate his voice, neither does his crying get modulated and I said, “Well how did you calm down.” And he said, “Well the teacher said she would go and talk to the SENCO.” And that is probably what it is, the teacher probably stopped trying to explain and recognized that he had reached, that he had gone beyond his limit.
 
But one of the things you can never do with him is rationalise in an emotional way. It is very cut and dried and it is quite hard to have a conversation when you are trying to explain feelings and emotions and that can make people seem irrational because he just gets louder and louder with it, just doesn’t make sense. So apart from that he does surprising things. He is surprisingly considerate sometimes. He is surprisingly empathetic, which I am not quite sure whether it is learned or it is inherent. He is really, really kind to his sister and he can see if another person is involved, I would think it is a chain of behaviours and he will rush to help them.
 

Jane describes how she tries to help her son feel balanced and learn to recognise his stress.

Jane describes how she tries to help her son feel balanced and learn to recognise his stress.

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And I don’t know whether, whether he is going to maintain his emotional stability and be in a position… He gets very, very stressed over exams. I don’t know whether his progress and his academic achievement will remain on the level that it is or whether he is going to develop bipolar disorder for example. I know what the relationships are with mental health, particularly anxiety and I can see that he has those, so what I am trying to do is help him feel balanced and able to recognize his own stress so that he can take appropriate measures for himself and to speak to people early so that it is not too late. And I don’t know how much I can do in that line. I can only hope that he learns to recognize, to do, and then do something. That is for me to sit and watch on.
 

Jane’s son understands nuclear fission but cannot see dirt on a plate he is washing up. Attempts...

Jane’s son understands nuclear fission but cannot see dirt on a plate he is washing up. Attempts...

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Trying to get… he washes up but he can’t see the dirt on the plate. Or he will scrub for hours at a pattern on the plate and when he puts the washing up on the draining board he puts the glasses and the plates upwards so they don’t drain and all the water stays inside them. So I have been, since Christmas, every day, “John, do you remember what I said, about putting everything upside down when they drain, so the water can drain away and making drying easier?” “Oh sorry, mummy.” Which is so funny, because he just forgets, yet he understands nuclear fusion.
 
So the extremes are bizarre. When he comes home, he will he has to rest from the social stress of the day, and if he doesn’t rest he gets very tearful because he can’t cope. He is very organised about doing his homework although he doesn’t have an idea of the concept of time. So he’ll put his homework off thinking he can do it in five minutes when it takes five hours and then he gets very stressed because he hasn’t got enough time. But that is better than it was but we still have a long way to go. Although he understands time implicitly, he doesn’t understand the passage of time.
 
If I ask him to hurry he goes a lot, lot slower because he is stressed and because he has to think about what he is doing, and it makes him forget things and when he forgets things he gets more stressed. So in the mornings it takes him an hour and a half to get ready because he follows a set routine and he stims a lot, and his stim is to dance around in circles, which is great for him, it is his energy burning, but at 3 o’clock and 4 o’clock and 2 o’clock and 3 o’clock in the morning it is not nice. And in school it is not nice.
 

Jane: 'the loss of dignity of saying I can't cope with this any more is soul destroying'.

Jane: 'the loss of dignity of saying I can't cope with this any more is soul destroying'.

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The only thing… it is very difficult applying for support when you have got a child without a physical difference, without a physical disability. All the mechanisms are geared towards the physical. You have to almost, it is okay to say yes I am sane, I am coping and I am exhausted, but you won’t get any help unless you have broken down and I think that, the loss of dignity in breaking down is so excruciating. The loss of dignity of saying I just can’t cope with this any more is soul destroying, because you want to cope and you, the symptoms you have are secondary to exhaustion. They are not depression because of an inherent disorder. They are secondary to the fights you have just to get heard.
 
The times you are told, “Well that is a social problem. We are education.” “Oh that is education, we are social.” And because you have got a child, because you use all your energy in keeping your child balanced and you spend all your money and give all your life to keeping this child in balance and being the best that you can and you follow all the government strategies and guidelines and philosophies, but you ruin yourself in the meantime. How much would it cost a professional to do that? And we get nothing. 
 
If I was to give up work to do this then all I would get as a carer is £40 a week and that is just not enough to keep everything going. If I was to give up as a parent and rely on the state, you would have a depressed parent with chronic depression. You would have a sibling, who would probably because of the traits, deteriorate to receive a full diagnosis and you would have a 14 year old who probably would be expelled from school and I think that all the parents who do so much and give so much, that needs to be considered in a much more careful light than it is now. And that the scrutiny for investigating what a parent does to make sure that a child is reaching their potential as the rhetoric says, needs to be much more fair. It needs to be more rigorous and the line between acceptable and not acceptable needs to be much, much higher for children on the autistic spectrum because if your child is not causing trouble there is no need. You won’t get help until your child is completely and utterly deviant in every sense of the word, and that is against all the government policies.
 

Jane’s son got into difficulties at school when the teacher began to find him precocious.

Jane’s son got into difficulties at school when the teacher began to find him precocious.

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That was all okay until the age of about six or seven when he started questioning the teachers and he had a teacher…. He went into a school, in to a new year, where he had a very traditional teacher who didn’t like his questioning style. It also emerged that he was very musical and he taught himself to play the keyboard at the age of four, following the keyboard books and he could play the recorder and the teacher didn’t like the fact that he was questioning, and I think she found him precocious and she tried to conform and make him... control him and it all went down hill from there. Whenever any one expected him to follow their behaviours rather than motivate by the back door, which I had found tremendously easy, we started having trouble.
 
When he started at the age of 7, or when the other children at the age of 7 started trying to socialise with him and he couldn’t or wouldn’t, I am still wondering which one is which. We started to have troubles with his peer group. He felt bullied. They felt he was just odd. They would jostle him and he would fight back. Between the ages of 7 and 10 I now know that he has overactive moro reflex which is the startle reflex. And I also know that he is hypersensitive to sounds and tastes and touch. And yet also his physical ability is confounded by the fact that he is mis-wired, so he does things backwards and he doesn’t do things like balance naturally. He has to learn them.
 
So with his tennis and swimming he will do exactly as the coach tells. So having a really good coach who can articulate what has to be done and tell him exactly to do with his limbs is brilliant. He will practice, and practice and practice until he does it but if anybody is ambiguous with him he has no idea.
 

Jane has managed to get a prescription for some gluten- and dairy-free products.

Jane has managed to get a prescription for some gluten- and dairy-free products.

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The other challenges are to do with the diet. He is gluten free and milk free because of the links with autism and I researched that and sent his urine off to the University of [city] which came up positive. That has been a significant support because he feels better. He doesn’t have the headaches, he doesn’t have the highs and lows associated with the absorption of those but it is prohibitively expensive. A French loaf of bread, half a French loaf, a baguette costs £1.32, £1.99. In two different shops and an ordinary white baguette costs 16p and he will eat two baguettes a day. I haven’t yet learnt the art of making decent gluten free bread. I have got two children who are gluten-free.
 
There’s... I have been to the GP. I have managed to get…. With all the test results and the diagnoses and I have managed to get a small prescription for bread and spaghetti. That was a major convincing negotiation, because the GP said, “No”, he is not licensed to deliver, to prescribe bread unless you are coeliac. Gluten free products that is, unless you are coeliac. And I said, “That is not true. You are licensed to prescribe whatever you think is clinically relevant. Please look at these results and accept that this is clinically relevant.” And in the end he did. So it is just another example of knowing what the doctors limits are to be able to negotiate. But you have to be so persistent. You have to be very determined.
 

A male carer looks after Jane’s son each week in an arrangement which has been a “godsend”.

A male carer looks after Jane’s son each week in an arrangement which has been a “godsend”.

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I have a carer for ten hours a week, who takes... He is a male carer, a young man of 24 who is very like him, but not diagnosed, but like him in the sense that he is intelligent, he shares the same interests, he is patient and calm and he facilitates Joseph’s personal development. That has been a godsend, because not only has he got someone to talk with for hours on end about the fine details of something which I have no idea about, but he has got a male, he has got a male to talk about male things with, he has got a male to go out with and he has got, I don’t, he doesn’t describe it as friends, he describes the people he knows as acquaintances. He is happy, he is relaxed and he is safe. And the carer has come out of the scheme for direct payments for children with disabilities.
 

Jane thought her son was different from the day he was born.

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Jane thought her son was different from the day he was born.

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Right. My son John has classic Asperger's and he was born at 36 weeks gestation.  I think the first time I knew that he was different was when I looked at him and looked at his body position in the basin  on the overhead heater when he was born and I knew immediately that I was in tune with him because he looked cold. Now I am a neonatal nurse and I was being nursed by my colleagues, so I had a huge advantage in the sense that not only was he not behaving like a normal 36 week gestation for this small age, but his behaviour was a bit different as well. So that was my first recollection of his difference.
 
The second profound recollection was when he was eight weeks old and a health visitor friend of mine came to visit me and him and I was aware that no matter how hard I worked with him, he didn’t want to smile back. And she worked for about two hours and finally we got him to give a glimmer of a smile. And I remember thinking at the time this is really strange, and also having a lot of experience with babies, I also noticed that he really needed some kind of sensory attention every two hours. So he needed, not necessarily to feed on me, but to nuzzle and to nestle and that was strange and the most bizarre things would startle him, much more so than I was familiar with. 
 
So the practical aspects of having a baby were not a problem to me, neither was the prematurity because I am trained to deal with that, but his behaviours were puzzling me and I was so in tune with him that when I would speak to the health visitor or my colleagues, they would say, “Oh [Jane] it is just you. You are just doing your job on him. Sit back and be a mother.”  And what they forgot was that I was being a mother and it was my mothering that was trying to communicate with them and what was stopping me was my professional understanding that they had no idea what I was talking about. 

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