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

Question:

Is it possible for children to display different behaviours at home compared to school?

Answer:

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,

Luke

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.

 

 

 

 

 

Pushing for action within the National Autistic Society

In supporting PDA we (the PDA army as we are commonly known) are constantly banging our heads against walls in getting PDA diagnosed for those who need it. The main reason is that its not in either the American or British medical directories. It is, however mentioned in the NICE guidelines which some counties use (Berkshire don't).  The NICE guidelines are not official for diagnostic purposes so areas can pick and choose from them which is why we currently have a postcode lottery for diagnosis.

However, we also have another problem. When people ask the professionals about PDA and diagnosis, the majority get the same reply.  "PDA is not autism, its a condition related to autism".  Yet, the NAS website clearly states that it is increasingly recognised as part of the autistic spectrum.

So why the confusion?

Part of the confusion is simply the lack of understanding. Another part of the confusion is the awful state of random diagnosis and recognition of the condition. The biggest part of the confusion, we believe is the National Autistic Society web site.

Despite clearly saying PDA is part of the autistic spectrum, the NAS website fails to mention it alongside autism and aspergers in its main headings. PDA is hidden away in related conditions, alongside ADHD, epilepsy and dyspraxia.

Lets be clear. PDA is a type of autism. It is NOT a condition related to autism. It falls on the autistic spectrum and should be as easy to locate on the NAS page as autism and aspergers.

Several people have written to the NAS and asked them to amend it, but as yet, none have had a reply.  We have found a link on their website asking for feedback from their pages. So we have left feedback. In fact, I think a lot of us have left feedback!

We would really like to see their website changed to reflect PDA in the correct manner in which it should be. PDA children meet the triad of impairments of all other autistic children. Sometimes its harder to see because they are able to mimic social behaviours and 'blend in'. But its there, they are autistic and we really need to let everybody see that.

If you are willing to help, please follow the link by clicking HERE. It will take you to a form to fill in with your feed back. We would really appreciate as many people as possible filling the form in and putting something simple like

 'Please change your website to place PDA alongside autism and aspergers instead of in the related conditions'

There is volume in numbers. It will be a big step to get this changed. It will be a start in the right direction of getting PDA recognised. And it will mean families of PDA children can point to the NAS website and say 'It is autism'

People need to think before they speak

And so it continues!

 

We are half way through the Easter holidays and so far its been the hardest times with Duck to date.  Her social anxiety has been awful. The week before school broke up there was an incident at school. Its currently being investigated by the governors because it should not have happened. The result is that Ducks fear of crowds, people and general social life has increased. Dramatically increased.

So far during the holidays Duck has had anxiety attacks over almost everything we have done. From going to vast spaces like national trust parks to busier places like Lego land, cinema, refusal of joining in a brownie activity and even a panic attack at visiting some of our best friends.

 

When I say panic attack, I really mean it. She can't breathe properly, she crys her chest hurts, she feels sick and starts flapping and panicking. The symptoms are real. The panic is real. People who have never suffered anxiety won't understand. She will try and push me or drag me to take her home, on some occasions she was violent, blindly lashing out in fear. Trying to negotiate is almost impossible. Trying distraction sometimes works but not very often. Every day she asks what we are doing, asks to go to places and do things yet when we get there she just can't control the fear.

 

If only the person involved in the incident at school saw the impact it had on Duck. Its left her in a really bad way. I have no idea how things are going to go when school starts again. But I can tell you the anxiety about it is already building for Duck. To anyone who saw or heard about the incident, on the surface it wouldn't seem anything major nor anything to give cause for concern. However, to those who know how Duck is and how everything is affecting her, it was huge. Its probably also worth mentioning, the person involved was given some really specific 'handling' guidelines for Duck less than 2 weeks previously. The guidelines were quite clear and the incident was a complete contradiction to this.

 

On other topics,

 

We put in a statement application for Duck to get more support at school. We now have to wait to see if she will be assessed. They have until 24th April to decide if they will assess her, then they have a further 20 weeks to assess and decide whether she needs 1-1 support. Its a long time to wait for a child who is so obviously suffering.

 

I have also completed my Level 4 Diploma in Child Psychology which I have been working on for a while and I passed with a distinction. I am now spending my spare time studying autism and PDA.

 

I also had an unannounced OFSTED inspection the other week, in case you don't know, I am a child minder!  (I had 2.5 hours notice as she had tried to catch me on the hoof but I was always out!) I managed to get a 'Good ' grade which is amazing for the length of preparation time. I have been child minder for 7 years or so and I was not due and inspection for another 2 years, however they can do random and unannounced visits if they wish and because of the recent involvement of social services, Ofsted have to follow up with their own inspection. I was pleased they did. Its another tick in the box, and it maintained my previous grade. I couldn't ask for more really. (Just for the record, Ducks school had 2 days notice of their last inspection (November 2013) and got a poor grade, well, the terminology was 'Inadequate'. It makes my 'Good' with no notice seem so much more valuable.....) 

 

I had a meeting with CAMHS the other week too. They have explained (kind of) all the errors on the letters I was sent which didn't make sense. I spoke to them about PDA and why they don't diagnose. She said that although the condition existed, it was not their policy to diagnose any condition until it is in the manual.  When asked why other areas do, she said they all make their own choices. However, she also agreed PDA and ODD are not the same and that a PDA child should get a diagnosis of Autistic Spectrum Disorder with Demand avoidance traits. I have yet to hear of this diagnosis in Berkshire though. I do wonder if that will actually happen!

 

I am still waiting for Ducks official feedback from her ADOS autism assessment. Its already been 9 weeks.  I know she wont get anything like PDA because she is a total Jeckyll and Hyde and is FULLY compliant for people she doesn't know. There would have been no signs of PDA what so ever. I also know they found her complex. I did, however, send them a copy of the private assessment we had undertaken on Duck. I do wonder if they have used any of this evidence in the CAMHS report. If so, they will have to diagnose Duck with ASD (Autistic Spectrum Disorder) In Berkshire, they don't separate the types of ASD. They just classify it all as under one umbrella. The point being that the childs needs should be met regardless of a diagnosis so they don't need anything more specific. I see the logic of this however, I also know that the handling techniques for different types of ASD are not the same. By giving specific a more specific diagnosis, you are more likely to find the right ways of managing each child.  This autistic spectrum is certainly vast and complicated. 

 

 

CAMHS have also called and offered Duck some sessions with a child psychotherapist, which started last week. First impression is that its made Duck more aware of her anxieties which doesn't feel great but I hope the plan will be to reduce them over the 12 week course. Week two is tomorrow morning. Duck doesn't want to go....

 

Ready for a long week ahead, lots of chocolate and wishing a great Easter for everybody. :-)

National Autism Awareness month. April 2014

So we are into the National Autism Awareness month, a time to try and wake people up the fact that autism is not going away, in fact, its growing in numbers. The spectrum is slowly becoming better known to professionals and they are able to pick up on autism in children who would have previously been missed (like Duck!). This is causing the numbers to grow. Its being said now that in the UK there could be as many as 1 in 100 children who are on the autistic spectrum somewhere. That's a lot. And as more children are identified, this number will keep rising.
There is a HUGE need out there for diagnosis and support. The post diagnosis support is limited and the pre diagnosis support is almost non existent. 

The National Autistic Society are trying to improve this. They have their own schools which cater for children on all aspects of the spectrum and they work closely with each individual child to ensure they reach their full potential. The offer support groups, online support, legal advice and general advice along with much, much more.

I don't believe autistic children fair well in mainstream. I don't believe the schools have the facilities to offer the right support for an autistic child, even with a classroom assistant. Perhaps that's just my experience?

For Autism Awareness day I have set up a Text-Donate just giving page. I will be (gulp) posting a photo of me in my onsie along with a 'tag friends, donate and share' system similar to that of the recent Cancer campaign which raised over £8 million.  I am realistic, I know we are really unlikely to reach that amount, sadly. Thats because not as many people are affected by autism so the willingness to donate will dwindle. I have however, set a target of £1500, which is not going to be easy. So when you see the pictures circulate, please would you join in and share? If people just donated £1 we would raise so much to help.

Things with Duck are not going too well. It appears school seem unwilling to accept the diagnosis. I guess this by a form I received which had a section for Special Educational Needs. The school had put in the space 'Possible Aspergers- un diagnosed'. I called them. I suggested they contacted my psychologist and raised the 'un-diagnosed' part with her. I was told they would do that. I have no idea if they did.

Meanwhile, Duck is finding class and the rules in class harder and harder to follow.  Just the other day, the teacher asked all the children to be quiet. Guess who kept talking? Then, when asked again to stop, she immediately rolled her eyes at the teacher. (one of her more annoying traits). This led to the teacher (according to other children who witnessed it) shouting at Duck in front of the whole class to 'Stop rolling your eyes at me young lady'. Which upset Duck and was followed by a chair being slammed into the ground, a bag being thrown and some verbal abuse about how Duck hates school and especially the teacher. I am thinking they are lucky the chair was slammed into the ground and not elsewhere.  I am also thinking that school really need to read the signs and work out that Duck isn't coping and that for as long as the teacher keeps yelling at her in front of the class, her behaviour will worsen. Don't get me wrong, I totally understand that Duck shouldn't have rolled her eyes, and yes, I agree the teacher should have dealt with her about it. However, I would have done it differently.

Needless to say, the next day Duck didn't go into school very well. Actually, she was fine for me at home, but as soon as we got to the school and the teachers appeared, she started. I got away and left the school as quickly as I could. I could hear her screaming and hitting the door as I left. The school called me later and told me she was the most aggressive ever, throwing things, hitting people and generally unhappy. I said I wasn't surprised she was bad, teacher shouting at her was not the ideal way of managing her behaviour. I have no idea how next week will go.  The form I previously mentioned also had a section saying 'Is pupil at risk of exclusion?' The school have filled it in with a 'YES'. I don't think the violence from yesterday will have helped in any way, shape of form.

For anyone who is interested in supporting our campaign for National Autism Awareness month, you need to take a pic of yourself in your onsie and post it to facebook or twitter with a note saying this...."I am supporting National Autism Awareness month. If you are nominated, you need to upload a picture of yourself in your onsie, pyjamas or dressing gown and donate to the NAS.  Text AUTM54 followed by amount (eg AUTM54 £2.00) to 70070." Then tag your friends and get spreading. The donation line is live now. Lets do this. :-)

Here is my picture, I have donated. Have you???