Saturday, 26 April 2014

Why has Duck so suddenly changed?

Another friend asked me something about Duck the other day, it made me think, if a friend who has known Duck since she was a baby asks the question, how many others are? She asked me this;

"Why has Duck suddenly changed so much at school? She never used to be a problem"

Wow, an interesting question from someone who has watched Duck grow and seen lots of difficulties, but a fair one too, so here goes with the answer.

Before school/nursery we socialised lots, playgroups, parks, soft play. Duck got as much exploration as every other child.

I shall begin at nursery. Duck separated badly at nursery. She was described as not mixing with other children and responding only to adults. Shortly before she left nursery she made a friend. Just one. Then she moved to school and left her only friend behind. Duck did not understand why.

Reception, Duck separated badly a lot of the time. Duck could read before starting school, however, because she did not know all the actions to the 'Jolly Phonics', School started her from scratch and effectively moved her backwards in her reading. Duck did not understand why. Her comprehension difficulties were starting to show. For example, school asked all children to learn their address. Duck spent 3 days refusing to attempt to learn it, saying she didn't need to know but the teacher wanted me to go and give her the details as the school did not know where we lived.  I had to have a chat with Duck and the teacher together to get her to explain that Duck needed to know her address and the school already had it. These sorts of communication incidents have continued. I think I could write a book of where Duck has failed to understand what has been said to her and given me totally the wrong message!

Year one. First parents evening, the teacher said to us 'Duck is not mixing with the other children as much as is expected'. No surprise there! I gave the school a huge report pre-reception explaining all of her difficulties! They had a few separation issues and despite a lovely sticker chart (which failed because Duck felt the sticker charts were for naughty children and she was not naughty), she regularly had to be peeled off me in the morning's. She had lots of friendship issues but eventually, she made a lovely friend. She found a lovely sweet girl and they clicked, it was the first friendship Duck made in school by herself. By the end of year one, her friend had left and moved to a different school. Duck didn't understand why.

Year two. This year things got interesting! Ducks difficulties began to show to much more of an extent than previously. There were a few incidents which demonstrated some behavioural issues with Duck. On one particular occasion, Duck proudly went into school with a brand new water bottle. She has won it at the fete, it was on with a tube for freezing inside to keep her drink cool. She left me and walked in really proudly with this posh bottle. Unfortunately, she slipped on a step and fell, smashing the bottle into a thousand little pieces (It was plastic, but plastic can still smash). The teacher and I were outside the school, the first we knew was one hell of a scream followed by Duck running out of the school, past another year 2 teacher, past her year 2 teacher and grabbing onto my legs screaming 'MUMMY, MUMMY!'  and very little else that made sense. Another teacher appeared at the door and told me the water bottle was smashed but Ducks poor communication meant that she was unable to explain to me why she was upset. We calmed her down and took her inside, clearing up the bottle and promising a new one at the end of the day. Eventually she calmed down enough to go to class.  The next term I was waiting for Duck at the end of the day. She was one of the last ones to come out, which was odd as I was always there and always ready for her. She eventually appeared in her PE kit with her TA.  The TA was somewhat different in her mannerisms, I did not understand why. She explained that Duck had split a milkshake on her uniform during lunch time and was therefore in her PE kit. Knowing how sensitive Duck is to that kind of thing, I responded by saying to Duck 'Oh no, I bet that upset you didn't it, don't worry, we can get everything sorted at home'.  Later, Duck told me she had a total panic attack over it, because she was so upset, and had told the teachers that I would be cross with her. (Just for the record, I have never got cross with a spillage. Its part of being human that things get spilt, lets face it, adults spill things too don't they?) Now the penny dropped, I was being watched for my reaction because my little Duck was so upset that she convinced them I would be angry. :-( Her communication difficulties led her to give totally the wrong reasons to the teacher. If her communication was better, she would perhaps have managed to say 'I really hate spilling wet things on me and it makes me angry' but she couldn't get those words out. All that came out were 'Mummy' and 'Angry' and a vast array in between.  The final big concern in year 2 was her eating. It was 3/4 weeks before the year 2 SATS. Duck became anxious over choking and refused all solid food. Duck has never choked. She was referred and treated under the GP and this issue is still ongoing, however, it started because she was nervous about her SATS.

Year 3 was a fairly calm year. We spent most of it going backwards and forwards to the anxiety clinic where Duck was referred to for her eating and other anxieties. Duck had more friendship issues this year. One girl was particularly unkind to her, she hit her a couple of times and kept calling her names. This led to a few incidents over not wanting to go to school and the beginnings of separation issues again. But by the end of year 3 Duck was quite calm and stable.

Year 4 started well, Duck had the same teacher, which I felt was good for her as she was still doing work on the anxiety issues and the teacher was offering consistency in school too. However, by the Easter holidays, Duck was obviously struggling. There were more friendship issues. On one occasion, a different teacher came and spoke to me because Duck had written names down of the children who were being mean and the school did not like her doing this. Ducks behaviour became more difficult at home and she was obviously becoming more anxious. It was in the May that we went back to the school and asked for a referral as we knew Duck was not getting better, she was still struggling socially, with her communication and understanding and with her flexibility in attitude.

Year 5 started badly. Duck did not like her teacher from the first time she met her. Duck was separated from her only friend (again) and she did not understand why. Ducks anxiety was high and she started with some severe separation issues from the first month. These issues have progressed. Duck is now regularly aggressive to the staff or myself when I drop her off and is under CAMHS psychology for anxiety issues. She had a private assessment in February and was diagnosed with Aspergers. She is highly anxious and very unsettled. 

So that's where we are. Duck has not 'Suddenly' changed. Yes, she has got worse recently.

If you refer to the Geneva Centre for Autism, Duck getting worse is explained by this;

"Whilst difficulties are present from birth, they may not fully manifest until the social demands exceed their limited capacity"

When I discussed this with CAMHS, she said exactly the same is true with children with severe anxieties.

Furthermore, the anxieties, which are a huge issue for Duck, are explained by this (from Tony Attwood, renowned autism expert).
40% of children with autism suffer from anxiety, however, as much as 65% of children with Aspergers suffer from anxiety.

Tony Attwood also explains the Jekyll and Hyde of autism, which clearly defines why Duck has slipped unnoticed at school, whilst displaying most of her difficult behaviour at home.

I describe some children with Asperger’s syndrome as being a ‘Dr Jekyll and Mr Hyde’ – an angel at school but a devil at home. This has been described in the literature as masquerading (Carrington and Graham 2001). Unfortunately, a parent may be personally criticized for not being able to manage his or her child with Asperger’s syndrome at home. A teacher reports that the child has exemplary behaviour in class so the behaviour must be due to a defect in how the parents manage the child’s emotions. It is important that school authorities recognize that children with Asperger’s syndrome can sometimes consciously suppress their feelings at school and wait until they are home to release their anguish on younger siblings and a loving parent. Such children are more confused, frustrated and stressed at school than their body language communicates, and the constrained emotions are eventually expressed and released at home. The cause of the problem is the child not communicating extreme stress at school, and not a parent who does not know how to control his or her child.

The diagnostic assessment should also include an examination of any examples of inappropriate or unconventional emotional reactions when distressed, such as giggling (Berthier 1995), or a delayed emotional response. The child may worry about something, not communicate his or her feelings to parents and eventually, perhaps hours or days later, release the build up of emotions in a ‘volcanic’ emotional explosion. Such children keep their thoughts to themselves and replay an event in their thoughts to try to understand what happened. Each mental action replay causes the release of the associated emotions and eventually the child can cope no longer. The frustration, fear or confusion has reached an intensity that is expressed by very agitated behaviour. When parents discover what the child has been ruminating about, they often ask the child why he or she did not tell them so that they could help. However, such children are unable to effectively articulate and explain their feelings to alert a parent to their distress, and do not seem to know how a parent could help them understand or solve the problem.”
Also, the following is from Dr Luke Beardon, also a known autism specialist
Dr Luke Beardon.txt
Is it possible for children to display different behaviours at home compared to school?
It is very clearly documented that many children with autism (though not all) will display
considerably different behaviours in different settings. This can be as a result of a wide range of reasons, from central coherence abilities, to environmental factors, to differing levels of stress in different situations.
A reasonably common pattern in terms of school/home behaviour is that the child may appear to present with no problems at school, but at home there can be major issues in terms of behaviour.
Often, the result is that either school simply do not believe that the child they see at school can be displaying the reported behaviours at home, or that school erroneously believe that because the behaviours are only seen at home then the causing factors for the behaviour must also be situated there. This is not always the case, and it is of imperative importance that all parties involve recognise the serious nature of high levels of distress, and recognise that all aspects of the individual’s life may be a contributory factor towards high arousal – which, in turn, may manifest in behavioural issues. This can lead well into adulthood – for example I support several people whose behaviour at work demonstrates no problem at all, whereas the reality is that they are in high states of anxiety and stress, to the point of self injury at home, and, in some cases, anxiety and depression to the point of suicide. This demonstrates just how important it is that all concerned recognise this reasonably common
autistic behaviour as early as possible, in order to support the child well. Just because a child has the ability to ‘mask’ their autism at school does not mean that they are not severely affected  by their autism on a daily basis.
I hope this answers your query – do not hesitate to forward this email onto anyone you feel may benefit from it. I have attached my CV in case that is helpful in terms of credibility in my answer.
Best wishes,
Dr Luke Beardon
Senior Lecturer in Autism
The Autism Centre
Sheffield Hallam University
Its quite clear from the whole list of events that Duck has not actually changed as much as she appears to have. She has merely reached her limited social capacity. The social demands, the communication issues and the immense dislike of her teacher have all combined to make one explosive child. She isn't coping any more. She has been saying to anyone who has actually appeared to listen since October that she is not happy and she does not like her current situation. She has told behaviour support, autistic support, the school SENCO, ourselves and even her teacher directly how unhappy she is.
She has tried really hard to communicate her feelings the right way. However, her situation has not changed. Behaviour is a form of communication. A child who is not being listened to or who cannot make themselves understood verbally will progress to poor behaviour in an attempt to make themselves heard. Ducks behaviour is her expressing that she is not coping and she needs support.
It really shouldn't be as difficult to get help for a child as it currently is.

1 comment:

  1. It sounds like she is doing so well trying to communicate the things she does have difficulty with - but like you say, this doesn't sound like a sudden change, it sounds exactly how it will be for our little girl. The social environment gets much more difficult for them, like a very steep learning curve and without the right support they are set up to fail :( hope she gets help soon xx