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

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!

Honey: Channel 4 'Born Naughty' Programme 1

You might have (briefly) seen me on the Chanel 4 programme 'Born Naughty?' I was involved with Honey, a 9 year old girl who was having lots of behaviour issues.

I saw her for the first time at the Children's Centre in a small Staffordshire Village, which is within the local library. I planned for her to get there at lunchtime, while it was closed, just in case we had any problems. I knew that she wasn't in school and could be difficult to manage.

Dr Ravi Jayaram, the Paediatrician and Dr Dawn Harper, GP, had already seen her at this point and had felt I was the relevant 'expert' for the job. My remit was to assess her language and communication skills and to see where that lead me including taking part in an ASD assessment .

It took a while to get Honey into the room (#understatementoftheyear), with her Mum being the brunt of her feelings. When she agreed, she said that cameras couldn't come in. I started the session with photographs of all the activities we were going to do and asked her to put them in the order she wanted to do them in. This gave her a sense of control.

I screened her language using an ipad app and various informal activities. I'd got a bubble wand as one of the activities both as  a motivator and as a reward in the middle of the tasks. Unfortunately it was raining extremely hard but a promise is a promise so we went outside to do this.

I think she felt sorry for me then as we were both soaking wet through so she agreed for the cameras to come in. I carried on looking at her expressive language using a narrative exercise. She joined in the activities but was very anxious. This was exacerbated when I asked her to re-tell the story: a palpable wave of fear emanated from her. To diffuse down the situation, I stepped into help. She completed all the required tasks.

After the first session, I knew we had a child who was very anxious with difficulties with receptive and expressive language and social communication but not enough information by any means!

We decided to capitalise on her love of animals and go to Nature and Nurture Therapy Centre at Sunshine Barn, in Ashbourne, for the next session. This is run by Frances Weston a counsellor with experience of many types of childhood issue including ASD and anxiety. I also took along Charlotte Williams, an autism therapist so they could both help in my assessment of Honey's needs. I like to work with others when doing an ASD assessment, not just a clinical psychologist and paediatrician but others with potentially different viewpoints if possible, so all factors are covered/considered. A diagnosis of ASD is a label for a lifetime so the NICE guidelines are essential as a minimum.

WOW!! What a difference. She was greeted by Tilly the therapy dog and came in quite happily. She spent some time familiarising herself with the other animals: Bertie and Beatrice the sheep, the ducks, the chickens etc and was fully co-operative for the entire afternoon.

I was able to complete a formal language assessment and various other tasks for an ASD assessment. Then later, while I interviewed her mum, Honey played with Frances and Charlotte and of course Tilly. This was quite unusual as Honey doesn't normally let her mum out of her sight in new situations.

Honey's mum has a really good understanding of Honey's difficulties. She lives with them everyday after all, so we were able to get a really good profile of Honey's strengths and weaknesses.

It was a very productive full afternoon and it was fantastic to have both Frances' and Charlotte's expert observations. We were able to report back our findings to the paediatrician. The findings from both sessions confirmed that Honey was on the autistic continuum. Her profile however,was not typical, rather it fitted the criteria for Pathological demand avoidance PDA).

As you saw in the programme, if you watched it, the positives of having a diagnosis are tied up with people's understanding of her behaviour. If we view it as 'panic attacks' its easier to stay calm and cope. The Elizabeth Newson Centre was also able to offer some different parenting tips. However, a note of caution: a diagnosis doesn't take away the extreme difficulties of Honey and her family. The diagnosis is only the beginning. They still have to live with this and do their best to get through each day. I have the utmost respect for them and hope I'd do half as good a job in that situation!

We'll look more about PDA next time.

For more information about Sunshine Barn please go to http://www.natureandnurture-cic.org/