Makes me so sad........

One of the things we do at Small Talk, is to see children who are having behaviour issues at school or at home and people are seeking the answer as to why they behave as they do.

It's so sad how so many children are being misunderstood. Time and time again, we see this scenario: 

The child who doesn't understand social clues and cues, may not be good at reading facial expressions, doesn't understand abstract language such as sarcasm, or people's intentions. They probably don't always remember that they need to modify their language according to the listener i.e. you don't talk to the teacher like you would your mum. They develop a strong sense of right and wrong to help them cope. They may be aware of their difficulties and be anxious.

Then, at lunchtime, someone knocks into them, they refuse to say sorry as it was 'an accident', they may try to explain that or just run off laughing. The child knows that you must tell if someone does something wrong but is sent away by the dinner lady or teacher on duty as 'he didn't mean it'. This upsets the child who gets more frustrated and wants to get his point across. He ends up shouting at the member of staff and is then sent to the headteacher. He is really fed up, frustrated and down right angry, so shouts at the headteacher too....... result: excluded for the next 2 days!

These children may be on the autistic spectrum but they might not. Social understanding is hard for many children.

The solution is simple:

1. A Social thinking programme with behaviour mapping for the child (Garcia Winner)
2. Training for staff

Why is that so hard to understand?

Are you are a parent whose child has diagnosed or suspected PDA or Autism

Hi, my name is Mandi Baker and I am studying for an MSc in Applied Research at Staffordshire University. I have worked previously with a number of children on the autistic spectrum, speech and language difficulties and with global complex needs. Last summer, I received my undergraduate provisional results, and the very same day was accepted on to the masters course, so  like any other mum, that evening I celebrated by pottering around tidying up after the kids were finally asleep in bed. In the background the TV was on, and I remember hearing the words “Born Naughty”, so I sat down in anticipation to watch – when Honey was good, she was very good, but her rage-filled meltdowns were alarming to watch, and instantly my heart went out to the parents.

Over the following weeks, I found myself asking the same question over and over where is the support for parents and of course the children?? Pathological Demand Avoidance Syndrome, a new sub type of autism, one that clinicians and educators seem to know little about.  I am not only fascinated by this condition but also very passionate about the support or lack of support for parents, particularly, whether their well-being improves after diagnosis? 

For my dissertation, I will be conducting research into, parent well-being in families of children with suspected or diagnosed Autism or Pathological Demand Avoidance.

The aim of the project is to investigate the associations between children with suspected and diagnosed Autism and PDA and the parent’s well-being along with the impact it has on their families. The emphasis on the diagnosis is important as the interventions in place for children with suspected PDA, are unsuccessful, due to the characteristics of the child. The strategies used for children with diagnosed PDA, conduct disorders or autism have been tested and have been found to be unhelpful because of the inflexibility of the demands used (O’Nions 2013).

So, if you are a parent whose child has diagnosed or suspected PDA or Autism and can spare 10 minutes to complete the online study please click the following link

http://staffordshire.eu.qualtrics.com/SE/?SID=SV_ezHVpgrYVx6rXjT

I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!

Many thanks,

Mandi

Email: b004105b@student.staffs.ac.uk

Billy: Born Naughty? Channel 4 series 1 episode 4

 I was asked to assess Billy as part of the programme 'Born Naughty?' to see what might be causing his bad behaviour at home and more recently at nursery. He had already been seen by the Paediatrician Dr Ravi Jayaram who had made some important observations.

Billy aged 3 years, along with his Mum and Grandmother came to a children's centre which was local to me but was a good 3 hours drive from their home. I played with him a for a short time and then screened his spoken language skills. I was looking for: his attention level, listening ability, auditory memory, understanding level (information carrying words), vocabulary, verbal reasoning and expressive language. I was also looking for his social communication/pragmatic skills which includes three major communication skills:

        Using language for different purposes, such as

§       greeting (e.g. hello, goodbye)
§       informing (e.g. I'm going home)
§       demanding (e.g. Take me home)
§       promising (e.g. I'm going to take you home)
§       requesting (e.g. I would like to go home, please)

Following rules for conversations and storytelling, such as

§       taking turns in conversation
§       introducing topics of conversation 
§       staying on topic
§       starting conversations appropriately
§       finishing conversations e.g. not walking away mid-sentence
§       how to use and read verbal and nonverbal signals
§       how close to stand to someone when speaking
§       how to use facial expressions and eye contact

It also includes Modifying language according to the needs of a listener or situation (for older children but Billy is too young for this), such as
§       giving background information to an unfamiliar listener
§       speaking differently in a classroom than on a playground
 

He coped really well with the assessment and scored highly on everything. I'd also put out a variety toys to see what the level of his play was like. His pretend play was amazing: he used lego as soup, made Batman and Robin from square shapes and pretended with imaginary toys too.

His family were concerned that he might have Autism as his uncle has  a diagnosis of ASD. They were worried that his behaviour was due to this. However, if we look at the older way of looking at ASD: i.e. the triad of impairment of language ability, social communication and flexibility, Billy scores so highly as to void any suggestion of ASD, this, together with Ravi's observations, meant I did not therefore do any formal ASD assessment. His mum is to be congratulated on a fantastic job done!

We needed to look for an different explanation of the behaviour and called in the wonderful Deb Sugden, sleep expert. 

www.libbyhillspeechtherapist.co.uk

What is Pathological Demand Avoidance?

If you saw the Channel 4 documentary 'Born Naughty?' last thursday, it might have been the first time you had come across the term 'pathological demand avoidance' or PDA for short. It is still not recognised by many professionals but I'm sure it's only a matter of time before they do though!

Elizabeth Newson in the 1980s found that there was a group of children who had ASD but that they had distinct characteristics. 

The main features of PDA are:

·         obsessively resisting ordinary demands. If you view the child a being extremely anxious, the everyday request can be the straw that breaks the camel's back. It's about threshold and tolerance levels which can be very low. The more relaxed they are, the higher these can be. Absolute refusal is common but other techniques can include 'shocking' tactics or use of behaviour/language designed to  put the reciprocating adult off their stride. I can't repeat on here, some of the things that have been said to me! The brighter the child, the more bizarre the behaviour they can counjer up! Many of the children I have worked with have had social workers who have had to come in pairs!

·         appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on). This can be the smoke screen that causes others to dismiss ASD, as social communication is such a key part to an ASD profile. This level of sociability can lead to the child being able to be very manipulative.

·         excessive mood swings, often switching suddenly. This is usually observed in all situations and worse where they aren't as relaxed. However, Parents report that sometimes, children can change as soon as they get home. This is because they are stressed throughout the day, manage to hold it in and then explode where they are more relaxed. I think its like a bottle of pop, shaken all day then you take the top off!!!!. Parents are often the brunt of the behaviour. The signs of anxiety can be many things but can usually be spotted, they include obvious body tension in hands, shoulders etc but you can also spot other things including their voice becoming higher as the tension affects their larynx. if you can identify the signs, it is sometimes possible to diffuse before a problem occurs. I have been very lucky to date to have been able to do this during assessments, so in the case of one child, was the only professional to avoid attack!

·         comfortable (sometimes to an extreme extent) in role play and pretending. I have found that the pattern of play is different so that they like to control the play with others eg I observed a 6 year old playing 'mums and dads' which looked appropriate but was actually her fully controlling the situation. She wasn't able to listen to any suggestions from others. Honey from Born this way programme 1, played 'dressing up' with my colleagues Charlotte and Frances but she dressed them not the other way around.

·         language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'. At first sight it can seem totally appropriate BUT closer analysis shows they are hiding it well. Coping with receptive or expressive language issues and masking them from others must take so much effort and is in itself anxiety provoking. 

·         obsessive behaviour, often focused on people rather than things.

All  behaviour is telling us something and as professionals we  need to identify the cause. there's no point in just working out a behaviour management plan unless we are addressing the core issues. The behaviour is merely the symptom. Many of the traditional ASD strategies don't work or don't work consistently but should still be tried. If we see PDA behaviour as 'panic attacks' it helps us to cope and deal appropriately. If we can help them manage the anxiety, reduce the the things which cause anxiety and help with any receptive and expressive language issues, we can go a long way to help the child.

There is no magic wand cure for PDA and the demands on their family is unimagine-able. Parenting is hard enough in usual conditions, so I take my hat off to each and every one!