PDA from the Perspectives of the Person with ASC/PDA

For many parents, trying to live harmoniously with a child with PDA can often seem an impossible task. One of the steepest and most important learning curves for me was to really try to view the world through my daughter’s eyes. This was not an easy task given that my child may only share her thoughts, feelings, emotions and the reasons behind her actions and reactions once in a blue moon.  Therefore, it really can be a guessing game of trying to understand behaviours that are simply foreign and not understandable to us.

There are so many strategies that we can be given to follow but it is so much easier to be able to follow those strategies and to become intuitive and natural in our approach if we have a basis of understanding that helps to make those strategies make sense and therefore flow more easily.

As a parent I have made many mistakes and continue to do so.  As my daughter matures, all of the strategies that I had come to rely on continually need to be adjusted, tweaked or completely changed. Some of my understanding may have been close to the mark and some may have been very wide of the mark. After all, much of it was guesswork given the information that I had to work with.

Now that more individuals with PDA are able to share what their world is like and why they are compelled to behave in certain ways it should make our job, as parents, far easier and should facilitate us to be better placed to meet the needs of our children with genuine understanding and empathy.


Riko’s Blog

The following blog, written by an adult with PDA, is one that I would recommend that all parents read to further enhance the understanding that we need to enable us to parent our children in the least anxiety provoking way as possible. If you can, begin with the first post and work your way through. This may be one of the most important resources available to you that will really assist you in developing the most suitable framework of strategies to support your child Riko’s Blog: PDA and More

Here are just a few wonderful quotes from Riko’s blog

‘Did you know PDAers may also avoid feeling and / or reacting to emotions?  It’s not something most people will see as a demand but as I like to say, anything and everything can be perceived as a demand, this includes emotions.  There are many sensory issues, anxiety responses, lack of understanding of social norms etc. at play in some situations which causes PDA people to react differently than expected. But for some, it goes a little deeper.  Even when we may know how to ‘be’ in those situations, the demand to ‘perform’ will cause anxiety which will make us either avoid our feelings or avoid reacting to those feelings.  If the PDA person is an empath, the emotions can become too much and threaten to overwhelm, so it’s easier to ignore or turn off emotions than try to respond’ Riko’s Blog – Emotional Avoidance

‘Theory of the mind is the ability to attribute mental states to ones self and others and to understand that others have mental states that are different from ones own. PDA people struggle more with this as their brains are wired in such a way that makes it difficult to understand their own mental states, never mind that of other people’s.  They can’t see how they appear to other people and they can’t imagine how the other person / people feel about the person’s behaviour.’ Riko’s Blog – Theory of the Mind and PDA

‘There are some demands which, no matter how hard we try, we PDAers cannot avoid. Because anything and everything can be perceived as a demand to us, there will naturally be some demands which are difficult or impossible to avoid altogether. This can cause a lot of stress. Since our brains believe demands to be something dangerous to be feared and avoided, being forced to confront them can be stressful and even damaging psychologically. Imagine being confronted with your worst fear, then knowing you’ll have to face it again the next day, then the next, then the next, never with any respite. Now imagine feeling like that about several things and being forced to face them regularly, and with extra unpredictable fears added on top.’ Riko’s Blog – Unavoidable Demands

‘PDA itself is oppositional in that part of our brain believes that what we want and how we are thinking is wrong and so makes us do the opposite to what we intend. It doesn’t matter how much I tell myself that there’s nothing to be afraid of, that it’ll be alright and that nothing bad has ever happened before, I still become anxious and I still end up not being able to do the things I try to do. My brain is oppositional to itself.  If doing as we are told causes the body to react with fight, flight or freeze then we will naturally try to control our own reactions by doing something that is linked to what has been asked (because we want to comply) but that is different to what has been asked. For example, if I am told to make a snowman I may make a snow penguin, because I want to comply, but my body/brain has seen complying to be dangerous, so I do something that is in line with the original request (building something out of snow) but is not what has been asked (a man), and I retain control of the situation. It’s like being in a speeding car that’s about to plunge over a cliff, and everyone else in the car wants to go over because they can’t see the danger. If you were sat in that car I bet you would make a grab for the steering wheel to drive in a different direction. It’s a similar process. We perceive a danger that others are oblivious to and we react instinctively to control the situation to ensure our safety. ‘ Riko’s Blog – Oppositional Behaviour

‘Due to the added anxiety that comes with PDA, PDA people will feel that nearly everything is a demand. Work, family, friends, school, housework etc may be at the top of the demand pile for these people, with other things coming in as lesser demands underneath. When you hear a PDA person or their family saying that everything is a demand, they are not far wrong. Throughout my life I’ve found that we have a much, much larger number of things which are perceived as demands. Everything from having to say ‘hello’ and ‘goodbye’ to being in the same room as strangers. From having to eat a meal to going to the toilet. Even breathing can be seen as a demand. Things that come naturally to most people, that they often do without even thinking about them, are a constant struggle to PDA people.  For PDA people, anything and everything can be a demand, regardless of whether it’s hard work or easy, unpleasant or fun, whether they want to do it or not, whether they’ve been asked/told to do it or have decided themselves that it would be a good idea to do. It doesn’t matter what it is, chances are it’s going to be seen as a demand, whether we want it to be or not.’ Riko’s Blog – What is a demand

More quotes from individuals with PDA can be found at Riko’s Blog Riko’s Blog – silliest things PDAers have avoided


 Donna Williams

I have also recently found reading the book ‘Exposure Anxiety – The Invisible Cage’ by Donna Williams, extremely interesting, informative and helpful. Although in one of her blog posts Donna analyses the PDA Diagnostic Criteria and states that, in her opinion, PDA is not the same as ‘Exposure Anxiety’ Exposue Anxiety V PDA

However, from my personal experiences with my daughter who is diagnosed with PDA, I would have to say that the description of ‘Exposure Anxiety’ given by Donna Williams in her book is extremely reflective of my daughter’s daily difficulties in many, many ways.  Perhaps it can be difficult to accurately compare the two descriptions when an individual is comparing inside knowledge of living with a condition against a clinical diagnostic criteria,  based on observations and research, from the perspectives of someone who is only able to observe that behaviour from the outside without feeling the emotions that are driving it. The old saying ‘two sides of the same coin’ spring to mind and perhaps only research into this possibility is the way forward to clarify if this is indeed the case.

Regardless of if PDA and Exposure Anxiety are one in the same the fact remains that this book and the insight that is provided by Donna Williams is, in my opinion, highly relevant and would be beneficial for parents to further explore. The strategies discussed are very much along the same lines as those that are recommended for PDA but the importance, for me, was the expanded understanding of my daughter that this book facilitated.

Therefore, I feel that it is vital for parents to gather all of the information that is available to us, from as many sources as possible, to have the best possible chance of truly developing the most appropriate framework of support for our children.

The quotes shared below certainly give an accurate account of my experiences with my child and how demand avoidance gradually pervaded every aspect of daily living until anything and everything became a demand to be avoided or a situation to be controlled.

‘Whilst individuals remain capable in those areas of life to which Exposure Anxiety has not become sensitized, it is often the case that the person’s capabilities get eaten away piece by piece until their life choices are limited and Exposure Anxiety runs their life more than they do’ Donna Williams – Exposure Anxiety ‘The Invisible Cage’ p.g. 12

‘The more Exposure Anxiety is challenged, the more the person sides with their anxiety against the environment and this compounds the condition. This progressive identification of selfhood with the condition means it becomes increasingly hard to stay self-motivated to initiate speaking, to look, to express a need or want, to share an interest or even dare to stay aware you have one.’ Exposure Anxiety ‘The Invisible Cage’ p.g. 12

In the book Donna Williams discusses the mechanics of exposure anxiety which may or may not be applicable to children who exhibit the demand avoidance and control seen in Pathological Demand Avoidance.  From a personal perspective it certainly all appeared very similar and related to my own experiences of parenting a child with PDA. A brief summary of the mechanics of exposure anxiety can be found below.

  • The child may only see the world in relation to their inner self. The outside world, the people in it and even the child’s own body may be viewed as external to the inner world of the child and something that simply revolves around the child.
  • Other people imposing their wants onto the child, initiating interaction or expecting interaction in the terms of us and together may be perceived by the child as invasive and threatening to their own inner world.
  • Even the body imposing it’s needs E.G. hunger, movement or needing to use the toilet may be perceived as an outside invasion of their inner world.
  • The child may feel a need to protect his/her inner world from perceived invasion from the outer world by employing a variety of protection strategies that would include avoidance, distraction and retaliation.
  • In addition to the threat of perceived invasion the child may also be experiencing sensory and emotional overload making the outside world even more frightening and overwhelming.
  • Over time the protection mechanisms employed by the child are strengthened and become more easily triggered.  Avoidance, distraction and retaliation become a subconscious and involuntary hair line trigger to perceived threat and overload.
  • This hair line trigger may become like a tic-like response that jumps in as a protection mechanism, these involuntary responses may  become beyond the child’s control.
  • As the child matures they may wish to have connections with the outside world and they may not want to be compelled to avoid, distract or retaliate.  But the instinctive defence strategies may be so deeply embedded in the child’s psyche that they prevent the child from even being able to engage with her/his own wants, needs and desires.
  • What was once a defence mechanism has become like the child’s internal parent. What was once their saviour has become their prison guard, keeping the world out and the child locked in.
  • The child may now face an internal battle, torn between wanting to engage with the world but being stopped by their own internal responses.
    Donna Williams, Exposure Anxiety – the invisible cage, 2004

As a short taster of the type of things contained in the book here are a couple of Donna’s You Tube videos.

Donna Williams – A Tour of Exposure Anxiety

Donna Williams – Strategies for Challenging Behaviours

Donna Williams – Communication Strategies

I think that it is important to remember that PDA is an Autism Spectrum Disorder, therefore children with PDA will have similar difficulties to other individuals on the spectrum to varying degrees.  While the avoidance of everyday demands and the anxiety that underpins this avoidance is possibly the most prominent feature of those who fit the PDA diagnostic profile, it is so important to remember that addressing all areas of difficulty may assist with the individuals ability to keep anxiety at a more manageable level.  If all triggers for anxiety are identified, reduced, removed or minimised this should help to generally raise the tolerance that an individual with PDA has, to deal with the hopefully now lower level of anxiety that remains.

Every individual will have their own unique profile of difficulties to address.  This is something that Donna Williams describes as the individuals own unique Donna Williams – Autism Fruit Salad and Donna Williams – The Three Faces of Autism Model


Quotes from My Daughter

Below are some quotes from my daughter which I hope will illustrate the inner turmoil that many children with PDA may feel beneath what can often be seen as a robust exterior. Some of these quotes were given at a very early age and so hopefully much of this inner turmoil is being dealt with and unravelled as she matures.

‘Can you get me a new brain because I can’t live my life like this anymore’

‘Please tell me that I won’t have PDA forever’

‘I haven’t got any friends and I know why but I just can’t control myself and how I react’

‘Not being able to comply with demands, even my own demands or things that I want to do is as frustrating for me as it is for you’

‘I just want to be a normal girl who goes to school like everyone else’

‘I feel like I have always had an adults brain trapped in a child’s body’

‘I don’t choose not to do things or to avoid things it is instinctive, it just happens.’

‘It’s like a have two voice in my head, two versions of me, one that wants to do things and one that stops me at every turn.  It is like being ripped apart, torn in two from the inside. I wear a happy mask so that others think that I’m happy, so that they feel happy, but inside I’m dying.’

‘I can’t even do things that I want to do because my other self stops me.  My other self keeps me locked in my bedroom, I feel like I have spent half of my life in meltdown and the other half locked in a cage. I’m sorry but that is how I see it.’

More quotes from children with PDA can be found at Riko’s Blog Riko’s Blog – PDA Kids Quotes


For more information about PDA please visit The PDA Society and The PDA Resource

 

 

 

 

 

 

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About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in PDA from the Perspectives of the Person with PDA, Uncategorized and tagged , , , , . Bookmark the permalink.

4 Responses to PDA from the Perspectives of the Person with ASC/PDA

  1. rebatchsoapbase says:

    Oh wow….. Thank you

    Like

  2. dragonriko says:

    Thanks for including my blog. I’ll have a read of Donna Williams’ work, sounds interesting. Thanks for sharing 🙂

    Liked by 1 person

    • janesherwin says:

      You’re very welcome Riko, it’s a fabulous blog and a very concise, and easy to read, insight into PDA. It really has helped me enormously these past few months to refine, adapt and tweak things for my daughter as she matures and difficulties become more about the internal conflict of not being able to comply with her own wants, needs and desires. I read ‘Exposure Anxiety – The Invisible Cage’ following a couple of adults with PDA recommending it to me. Hopefully, in conjunction with your work, it may help other parents to further understand their child and be in a better place to provide the most suitable social environment for the child concerned. 🙂

      Liked by 2 people

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