… but it is lack of understanding from others that causes this anxiety to increase and become more debilitating.
… one GP stated: ‘I was not aware that there was such a thing as high functioning Autism’.
The latest article within this series hasn’t been written by Dr Judy Eaton, but instead by Kaylee Weaver, one of our very experienced Higher Assistant Psychologist.
Here, Kaylee shares her experience of the challenges we as a team face week in week out when assessing children with Extreme (also known as Pathological) Demand Avoidance.
Presenting demands to children with PDA/EDA is one of the biggest challenges I have had to face as an Assistant Psychologist. From attempting to engage these children in activities they enjoy, to attempting to administer psychometric assessments, I have never been given a free pass. Trying to maintain a child’s mental health, avoid a meltdown, and build a positive rapport, while simultaneously trying to encourage such children to ‘comply’ with necessary demands or complete required assessments often feels like an impossible balancing act.
As an Assistant Psychologist at Help for Psychology, I have received guidance from highly experienced clinicians in this area and have now worked with many individuals who present with extreme demand avoidance. In this time, I have developed a greater understanding of how to manage and work with anxiety driven, extreme demand avoidant children. Therefore, I would like to take the opportunity to share my experiences in the hope that it may provide some insight into this profile of Autism and may provide a few ideas around how to overcome some of the barriers professionals, teachers, and parents alike may face when engaging with children with this profile.
A natural reaction to demands for some children is avoidance. Over the past 18 months of observing children with PDA/EDA I have witnessed many avoidant behaviours. The power of some children’s avoidance tactics never ceases to surprise me, and all sense of pride or dignity are frequently lost as a child’s level of avoidance has resulted in me, yet again, administering assessments in tents, or under tables, or delivering assessments to toys or teddies, or children pretending to be superheroes or animals as they try to avoid any of my direct demands. I am always in awe at the ideas these children are able to come up with in order to avoid tasks; that mystery option number three that you never quite managed to think of yourself in enough time to strategically deliver a demand – and they have outsmarted you yet again!
The most obvious avoidance tactic, other than realising you are upside down hanging off a chair trying to administer a cognitive assessment, and asking a child if they know how trousers and shirts are similar, is the use of elaborate excuses: ‘I’m afraid that’s not how the world works’, ‘I can’t possibly; I’m Mr Platypus and platypus’ don’t talk’, ‘my nose is running so I can’t do it’, ‘I’m a bit tired now, maybe we should stop’, ‘this is boring’, ‘they aren’t allowed in here so I can’t until they leave’. Whilst such excuses can at times feel comical, it is important to remember they are being delivered by a child whose overwhelming anxiety is driving their need to be avoidant. Other avoidance tactics I have noticed include asking me repetitive questions to delay completing a task, or offering me lots of information relating to prescribed interests or previous experiences to an intense degree in an attempt to distract me or delay my delivery of tasks or activities.
These children have also on numerous occasions employed physical avoidance tactics such as presenting with a significant amount of impulsive behaviours, or physically removing themselves or assessment materials from the room in order to avoid me personally, or me using any potential equipment to complete an assessment. Some have attempted to direct my attention elsewhere, by pointing to objects or showing me items in an attempt to distract me, delay my delivery of a demand, or delay the completion of a task. At times, albeit, thankfully, less commonly, children have threatened me with physical violence, or responded with hostility and aggression, or threatened to inflict physical pain upon themselves in order to communicate that they have reached their peak of anxiety. This is usually their final avoidance strategy, having exhausted all of their avoidance resources, at which point the ‘mask’ usually falls and the extreme control is clear for all to see.
Control. Controlling me, controlling others, controlling their surroundings, controlling demands. Control is the best option available to a PDA/EDA child who is trying to manage their anxiety when faced with demands. For example, I have, on several occasions, relinquished my need to be an authoritative professional as an eight-year-old has informed me ‘you can stop talking now’ or ‘I will tell you the answer and you can tap the iPad yourself’, with a particular favourite of mine being ‘how about I deliver the assessment to you instead?!’
I have developed an endless list of strategic ways in which children with PDA/EDA have exerted their control over me personally (at times without me even realising that I have surrendered control). A couple of examples include; controlling the way in which I am allowed to deliver demands (with the door open, facing away from them, putting on a French accent, using a superhero figurine), or instructing me to complete certain activities/tasks of their choosing (such as writing cards to their family members, or drawing pictures for their peers) before they will contemplate following a demand or even ‘allowing’ me to deliver a demand.
Alternatively, I have observed such children trying to control others; where people could sit, when people could talk, what people could say. I have also witnessed PDA/EDA children attempting to control demands themselves such as; when the demand could be delivered, what demands they were happy for me to deliver, in what order the demands could be delivered, what activities had to be completed before, in-between, or following the delivery of a demand.
Attempting to work around a demand avoidant child’s avoidance tactics is hard enough without realising that you are now being controlled and are having to actively accept that a child is attempting to control you, the adult. By reflecting on situations where PDA/EDA children have presented with a high level of control or avoidance, I have employed a variety of strategies that have proved useful when attempting to engage with them.
Remember the days when traditional behavioural strategies such as rewards, negative consequences or punishments in general were a popular tactic employed to address ‘misbehaviour’? In my experience, these methods are likely to significantly hinder the probability of a child with PDA/EDA demonstrating ‘model’ behaviour or following my demands – in fact, this approach has typically left children feeling angrier and more resentful, and myself feeling ultimately embarrassed and frustrated.
Broadly there are a series of strategies I employ in order to be able to successfully deliver a demand or an assessment:
Framing demands as a challenge. I have often framed a demand as a really challenging game with different levels that the child can progress through (it is important that they have the ability to achieve all the levels in this ‘challenge’) or as a challenging game played against myself or others where the child can compare their achievements (it is important that the child always ‘wins’).
Framing demands as a race. I have often pitched demands as a race against someone else, again with the opportunity for the child to demonstrate their ability to achieve and win. This strategy is always amusing to employ as it is quick paced and before the child has even realised, they have complied with a demand and completed a necessary task.
Using inadvertent discovery. I have found that placing objects or materials near to the child is useful in seeing whether such objects can independently spark a child’s interest. I have noticed that if interest is sparked naturally, the child openly allows me to deliver the demand as it no longer feels like a demand but a way for the child to perhaps develop a skill or increase their knowledge.
My overwhelming feeling when interacting with children with PDA/EDA is incompetence. However, using this feeling of incompetence and purposefully acting incompetent with extreme exaggeration and dramatization has proved useful when working with these children. I have found that this approach allows the child to feel victorious in comparison to myself, generates humour, encourages engagement, and subsequently results in compliance. ‘Pretending’ to direct demands to others in this room, objects/toys, or indeed myself, has also proved successful.
On many occasions I have found myself saying ‘well maybe Spiderman knows the answer to this question?’ or ‘I think it’s Teddy’s turn to do this job’ or ‘I’ve got so many jobs to do, my manager is not going to be particularly impressed with me if I don’t finish them’. By moving the focus of the demand onto someone else it alleviates some of the pressure on the child to comply, and also allows the child’s confidence to remain intact if indeed they aren’t sure of how to complete the task.
One of the most important techniques I have employed when working with children with PDA/EDA is simply spending time with them. Engaging in conversations regarding their preoccupations or special interests, engaging in activities they enjoy, and taking time to build a rapport. This communicates to the child that I am willing to enter their world and am genuinely interested in their experiences. I have found this approach useful in developing engagement and trust following which children have been more open to following my demands. This approach also delays the delivery of any demands and helps the child to feel as if they themselves have successfully avoided demands and sufficiently delayed their delivery, after which they feel as if they have regained some control. As such they may subsequently actively choose to comply with any further demands with a sense of accomplishment at having delayed them for as long as possible.
It is also helpful, where possible, to relinquish some control to the child and allow the child to choose what demands will be followed, in what order, with who present etc. This has proved extremely valuable in avoiding meltdowns and promoting compliance.
Remember you are only human and working with children with PDA/EDA is HARD.
Strong emotions are often triggered and I have found self-reflection to be a valuable tool to employ when attempting to manage my own emotional responses to PDA/EDA children’s behavioural presentations.
For instance, when a demand avoidant child is displaying avoidance tactics or controlling behaviour I try to think of similar situations I have experienced personally – when I have felt extremely anxious and have been presented with a situation which I believe might threaten my safety, or when I have been resistant or defiant because I have been asked to do something that frightens me. By recalling how I felt during these times, I have been better able to empathise with how these children might be feeling when they are faced with any demands and are employing strategies to avoid or control. I have found that feelings of frustration and anger easily arise and cloud my ability to empathise with these children who are clearly in distress and I have had to actively encourage myself to try and understand each child’s unique emotional experiences during these situations. By recognising my own emotional responses, I have been able to successfully maintain my own mental well-being and have therefore been able to employ a more empathetic, positive, flexible, informal approach when working.
This has allowed me to, on several occasions, maintain a child’s mental health, avoid a meltdown, and build a positive rapport, while simultaneously managing to complete required assessments.
Many, (probably most), will have significant challenges with their executive function. Executive function is the ability to plan, sequence and organise.
Both girls and boys with Autism can struggle to read between the lines and cope with young people they thought were friends talking behind their backs.
Launched on 21st August 2019, this new book addresses the gender gap in the understanding of autism, and explores the educational needs of girls on the autism spectrum from early years to secondary school, in both mainstream and special settings.
by Judith Hebron and Caroline Bond
Addressing the gender gap in the understanding of autism, this multi-
This book also includes a chapter written by Dr Judy Eaton titled –
As many people may be aware, there has been a great deal of interest in, and controversy around, PDA. What it is, what it should be called, and whether it actually exists.
As it is now over thirty years since the original concept of PDA was introduced by Elizabeth Newson and her colleagues, and how the thinking around Autism has moved on significantly during this time, it is very appropriate that this is discussed.
The first point of discussion is often around the name – many people find the term ‘Pathological’ difficult to accept. They state that it puts the ‘blame’ for the demand avoidance firmly upon the child, and misses the reasons why a child might avoid certain situations or requests. No one would dispute that avoiding demands is a human trait – we all do it to some extent. Sometimes there is a completely rational reason why a child might resist doing something. School and school work are often a trigger, and many children are actually traumatised by the school environment, and the fact that they find aspects of the work difficult. They may have sensory issues that lead to them becoming overwhelmed in certain situations. All perfectly reasonable reasons to avoid activities.
Some people prefer to use the term ‘Extreme’ to describe demand avoidance, but again this is not without its challenges. What exactly qualifies as ‘Extreme’?
In addition, there are a growing number of people who actively identify with the label of PDA, and refer to themselves as PDAers. Using such an identity gives them a feeling of belonging to a group of people who understand their challenges, and who is to say that this is wrong?
However, there are significant difficulties with this in terms of pinning down what exactly PDA is. A major critique of PDA is that there are still no clear, unambiguous features of PDA that everyone agrees on. Support for, and acceptance of, PDA across the United Kingdom, and indeed across the world, is variable. Some areas have taken a stand and stated that it ‘does not exist’, or that they do not recognise it as a diagnosis, or even as a descriptive label. This has led to a huge rise in the number of parents and individuals who feel they recognise features of PDA in themselves, seeking support via social media sites. This is undoubtedly a lifeline for many who are desperate for support. Sadly though, ‘evidence’ gathered from these sites does not tend to be accepted by those carrying out academic research, or those who decide upon policies.
Another major point of discussion centres around whether PDA is exclusive to Autism. This is a really interesting question. As a team we have been fortunate to be asked to assess children (over 350 in a two year period) with a variety of difficulties and backgrounds. Very often, on paper, the referral information looks very suggestive of what has now become known as the ‘PDA profile’. However, when we meet some of these children, and spend time (often several hours) interacting with them, it becomes clear that their demand avoidance can be ‘better explained’ by something else (sometimes a ‘rational demand avoidance’ or attachment difficulties/developmental trauma).
As a team we have spent many many hours discussing this and trying to pin down exactly what feels different. We have carried out research on the data gathered from these 350 children, and have written this up for publication in academic journals. But these things take time. We have taken on board the critique which has been forcefully expressed by those who do not feel that PDA is a ‘thing’ and have questioned our own judgement time and time again. But (and this to us is a very important but), sometimes a child comes into our clinic and we all look at each other and say ‘There it is, that’s what PDA is’, because these children are SO similar.
Our team has spent many hours with children with a variety of different difficulties, and there is just something about the children with the PDA profile that makes us believe that it is an identifiable ‘thing’. It will take time and more research to establish how this ‘thing’ can be better understood by a wider audience. All of these children meet criteria for Autism first, and the PDA is explored alongside this. It may be a co-morbidity with Autism, it may be a trauma response, but ignoring it or arguing about what to call it or whether it is a ‘profile’ or a ‘syndrome’ is not helpful for the parents and children in the middle of these discussions.
It is not pleasant discussing the impact that the types of behaviour we have seen has upon parents, teachers, siblings and often the young person themselves, but it is a fact. Many people do not like the idea of labels, or of sub-categories for Autism. We, however, tend to use the analogy of apples – apples are apples, but there is no doubt that a Gala apple or a Pink Lady apple is better as an eating apple, whereas a Bramley apple is better cooked in a pie. All are apples, but using a descriptive label helps people to know something about their individual characteristics.
Some critics argue that there is no need for a label such as PDA, and that the strategies suggested for working with children with PDA are just good autism strategies. This is true up to a point – using a flexible child-centred approach is beneficial for all children. The opposite does not apply though. Trying to use routine-based, Autism strategies, or strategies that work for children with attachment difficulties, such as reward charts and contingency based systems, simply do not work for children with the PDA profile. Ask any teacher. With this type of approach, it is hardly surprising that the PDA society survey found that 70% of children with this profile were home educated, or out of school.
The take home message from this post is to appeal to those people who are so against the idea of a PDA profile – please give those of us on the front line time. Time to pull together our evidence, time to read and learn from others in the field. These things take time to develop. The process of publication of academic research is slow. There is no doubt that after 30 plus years it is time for a fresh look at PDA; but simply arguing that it does not exist is not helpful. Also please listen to the few professionals out there who have experience of being at the ‘coal face’ – those of us who have actually sat on the floor with a child, tried to negotiate with them, attempted to play with them, and listened to their broken parents. Also, please listen to the children who ask for help and who say they don’t want to be difficult or challenging. Please think about the potential trauma for the child who is being continually misunderstood and mismanaged. Please think about the parents who are accused of fabricating or causing their child’s difficulties due to poor parenting and remember, until the 1980’s Autism itself was not in the diagnostic manuals like the DSM. This did not mean that some people were not autistic before 1980.
This remains a hidden and poorly understood disability for many people with Autism and ADHD.
Unfortunately though, without an assessment or diagnosis, families are often left in the wilderness with no support.
All behaviour is a form of communication.
An article published on 30th August 2018 by the National Autistic Society, titled ‘What teachers need to know about Autism’, was a very timely reminder that 70% of children who are on the Autism Spectrum will be attending mainstream schools. Hopefully those with, what I would call, more obvious features of Autism, will be going into (or back to) school with a support plan, or at least an awareness of their strengths and challenges.
However, what I would like to highlight in this article is that a large number of children will be going into, or back to school, without a diagnosis, or any recognition of their difficulties. Many parents will be sitting at home now dreading the next few weeks. They will have watched their children becoming increasingly anxious as the summer holidays come to an end. They may have seen an increase in tearful behaviour, repetitive questioning, or even angry outbursts and ‘meltdowns’ over the smallest thing.
The trouble is, those children are often the ones who school teachers think are ‘fine’ because they do not appear to be struggling in class. So I would like to outline some of the signs that a child with undiagnosed Autism might display which can often be mistaken for something else:
Autism presents in many different ways. Just because a child appears calm and settled, makes good eye contact and appears to have friends, does not mean that they are fine. Eye contact, gesture and appropriate behaviour can all be learned and copied by a bright child, but this often comes at a cost.
I am not saying these things lightly or because I think that every child who may have Autism necessarily needs to be treated completely differently all of the time. It must be a challenge for any teacher trying to manage a busy class of thirty plus children. However, I have read the worrying statistics about mental health issues and the number of young people who regularly self-harm in adolescence and even earlier. I have also witnessed first-hand those young people on the Autism Spectrum who have experienced severe and sometimes life-threatening mental health difficulties. Often when you look back at early school reports, all that is noted is that the young person was ‘an anxious and fragile child’.
So my message to new and returning teachers at the beginning of this school year is to please metaphorically rip up and throw away your perception of what Autism is and is not. Very few if any children with Autism present like Rain Man, or Sheldon from the ‘Big Bang Theory’. Many can (and do) make eye contact, and appear (at least superficially) sociable. Please print out the points above, pin them on the staff room wall, and lastly, please listen to parents who come to you with concerns.
Launched on 21st August 2019, this new book addresses the gender gap in the understanding of autism, and explores the educational needs of girls on the autism spectrum from early years to secondary school, in both mainstream and special settings.
by Judith Hebron and Caroline Bond
Addressing the gender gap in the understanding of autism, this multi-
This book also includes a chapter written by Dr Judy Eaton titled –
Repeatedly being exposed to stressful situations leads to increased activation of the sympathetic nervous system.
There must be evidence of exposure to ‘multiple or prolonged adverse events over a period of at least one year’.
When this then feeds through to school teachers and SENCO’s it can lead to tense situations between school and parents.
PDA does exist. The research evidence is growing …
But just how are parents supposed to manage a meltdown which goes on for hours?
They are reporting EXACTLY the same behaviour and reactions in their children.
